Erica Tandori 270815 VCA Thesis 17 October 2016 Final PDF

INTO THE VOID:
EXPLORING THE EXPERIENCE OF VISION LOSS THROUGH VISUAL ART
ERICA JOAN TANDORI
Submitted in partial fulfilment of the requirements of the degree of
DOCTOR OF PHILOSOPHY
VICTORIAN COLLEGE OF THE ARTS
THE UNIVERSITY OF MELBOURNE
October 2016
orcid.org/0000-0002-5228-707X
ABSTRACT
This research project centres on a personal experience of vision loss, through

the framework of a studio art practice. It examines the significant loss of visual
acuity resulting from the onset of Fundus Flavimaculatus, a genetic form of
macular dystrophy that causes central vision loss and ultimately, legal
blindness. It asks, “What does vision loss look like?” or, more specifically, “What
does macular dystrophy look like to me?”, seeking to find those answers in the
very arena where its impact is felt most – in the field of vision as it is
experienced in everyday life, and through the visually expressive language of
art.
The resultant body of artworks is comprised of photographs, digital works,

drawings, paintings, monotypes and animations. They reflect several years of
studio investigation in which I have tried to capture the sometimes elusive but
often intriguing symptoms of my own vision loss. While a representative
selection of these artworks is embedded in the body of this dissertation, the
complete collection of artworks is contained in section 9.1 Artworks Developed
for this Research.
A selection of these artworks has been exhibited as a component of the

researcher’s Completion Seminar at the Victorian College of the Arts in June
2016.
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DECLARATION
This is to certify that:
the thesis comprises only my original work towards the PhD except where
indicated in the Bibliography;
due acknowledgement has been made in the text to all other material used;
and
the thesis is fewer than 100,000 words in length, exclusive of tables, maps,
bibliographies and appendices as approved by the Research Higher Degrees
Committee.
Signature of Candidate
Erica Joan Tandori

BA(Phil), PGCertFineArts, PGDipFineArts Melb, MFA Monash
ENDORSEMENT
Signature of Supervisor Signature of Supervisor
Prof Su Baker Prof Jill Keeffe
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DISCLAIMER
Notice of Liability
The information in this thesis is distributed on an ‘as-is’ basis, without warranty.

While every precaution has been taken in its preparation, neither the author
nor the University of Melbourne shall have any liability to any person or entity
with respect to liability, loss, or damage caused directly or indirectly by the
information described herein.
Copyright
The right of Erica Joan Tandori to be identified as the Author of the Work has
been asserted by her in accordance with the Australian Copyright Act 1968 and
Australian Copyright Amendment Act 2006.
All rights reserved. No part of this thesis may be reproduced, stored in a

retrieval system, or transmitted in any form by any means, electronic,
mechanical, photocopy, recording or otherwise, without the prior written
permission of the author.
ã 2016 Erica Joan Tandori
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ACKNOWLEDGEMENTS
It was my very first day as a PhD student, and I was sitting outside the office, waiting
to meet my new supervisors, Professor Su Baker and Professor Jill Keefe OAM, and I
had just received news that my sister was in hospital again, gravely ill with a brain
tumour she had been battling for almost 18 years. I couldn’t stop thinking about the
fickle hand of fate that entire morning. While I continued on with my studies, feeling
privileged to be given such a chance, my sister’s health steadily declined, until she
passed away almost exactly a year later. This thesis is dedicated to her, because she
never got the chance to pursue her interests, let alone continue with her life. I am
grateful to the people who helped me through that time – my family, my supervisors
Jill and Su, and especially to Jill for her hugs, and kind thoughts, to Lil Deverell, my PhD
cohort, with whom I shared many good laughs in the office, as well as many good
lunches, to Dr Rahul Chakrabarti for the deep conversations, and to Dr Suganya
Selvarajah for her sweetness, and to all the warm and welcoming staff at the Centre
for Eye Research Australia, who made me feel at home. I also want to especially
acknowledge the help of my friend Dr Paul McMahon, who also lost his old love and
good friend with the passing of my sister. Paul has helped me and my family immensely
over the many years since my sister brought him home to meet us. He has also been
an enormous help in supporting me through these difficult times. I also want to thank
my dear friends Beverley Brigham, Germana Santoni, and Deborah Akers, for being
unbelievably supportive and wonderful friends, my brother John and my cousin Zoli,
and my daughters, Isabella and Francesca, who I hope can also one day have the
opportunity to embark on some scholarly endeavour if they so choose. Not a day
passed, even at 3 am, when I did not relish sitting down to research, read, write or
make art – every moment was a privilege and I am so thankful for the opportunity and
support I was given to embark on, and complete, this research project. In light of this
I also thank the Pierce Armstrong Foundation for awarding me a grant to help produce
these artworks. And lastly, special acknowledgement for my dear little dog Lizzie, and
my cat Max who often featured in my PhD art works, may they rest in peace too.
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GLOSSARY OF TERMS AND ABBREVIATIONS
Age Related Macular AMD occurs when the Macula deteriorates

Degeneration (AMD or due to age and other factors.
ARMD)
Amsler Grid A series of grids developed by Marc Amsler

and used in ophthalmic practice since 1945.
Variations of the grid are used to text for
maculopathies of the eye. Each eye is tested
individually, by fixating at a central spot on
the grid. It is still widely used today in
monitoring of patients.
Autosomal Recessive Refers to the pattern of inheritance of

Inheritance (ARI) hereditary disease. Each parent must be a
carrier, to pass on a faulty gene. Therefore
they will have one mutated or recessive
gene and one normal, or dominant gene for
the condition to develop.
Central Vision The small area of vision at the centre of the

visual field, that enables fine Visual Acuity
and the ability to drive, read, recognize faces
and other activities that involve fine
detailed viewing, usually only encompassing
a few degrees at the centre of the Visual
Field.
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Charles Bonnet Syndrome Type of visual hallucinations of various kinds
(CBS) and degrees, caused by vision loss, without
the presence of psychological disturbance.
Circadian Rhythms Also known as the 'body clock' which helps

dictate biological rhythms of an organism,
normally triggered by lightness and
darkness in the environment.
Cortical Completion Refers to the phenomenon of the filling-in of

absences in the visual field, such as the
natural blind spot. Cortical completion or
the 'filling-in' phenomenon can also occur
when areas of the visual field no longer
receive retinal input due to neural causes
but still appear to generate retinal input to
the observer.
Dark Adaptation The ability of the photoreceptors of the eye

to respond to changing light conditions,
including from lightness to darkness.
Dark Choroid The Choroid is the layer of the eye between

the sclera and the retina. In fluorescein
angiography the choroidal blood vessels
underneath the retina should be visible.
Stargardt's Disease may reveal a 'dark-
choroid' due to lipofuscin pigment, which
builds up, blocking light transmission
through the RPE layer.
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Entoptic Vision Visual disturbances and appearances that
originate from the eye itself.
Entropy An altering or deterioration of states, from

order to disorder, and from unity of form to
decay.
Fluorescein Angiography A medical procedure in which fluorescent

dye is injected into the bloodstream,
highlighting blood vessels in the back of the
eye which can reveal a variety of disorders
of the eye.
Fovea A small central pit located at the centre of

the Macula, comprising densely packed
photoreceptor cones, which are responsible
for our finest vision. There are no
photoreceptor rods at the fovea.
Foveola An area at the centre of the Fovea,

approximately 0.35 mm in diameter and
comprised only of cone cells, enabling the
finest of vision.
Free Radicals Highly reactive molecules which have been

linked to illness, ageing and disease.
Fundus Flavimaculatus Also known as Stargardt's Disease,

(FFM) sometimes distinguished as a separate
disease, while still being defined as a genetic
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form of juvenile Macular Dystrophy causing
progressive vision loss resulting in Legal
Blindness.
Functional Magnetic A procedure that measures brain activity by

Resonance Imaging (FMRI) detecting associated changes in blood flow
to produce images of the brain.
Goldmann Spherical A machine enabling the measurement of

Projection Perimeter peripheral and central fields in eye testing.
Humphrey Visual Field A machine enabling the testing of various

Analyser eye conditions, including glaucoma and
visual field loss due to other causes such as
brain tumours or stroke.
Lateral Geniculate Nucleus A part of the visual pathway that receives

(LGN) sensory input from the Retina. It forms the
main connection for the optic nerve to the
occipital lobe.
Legal Blindness A level of vision loss that indicates a drop in

central visual acuity of 20/200 or less in the
better eye, and/or a visual field of 20
degrees or less. Enables legal eligibility for
government support and services.
Low Vision Defined by the World Health Organization

as visual acuity less than 6/18 to light
perception with the potential to use vision.
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Macula The small, central part of the Retina which is
responsible for Central Vision, contributing
to the ability to see fine detail and colour.
Macular Dystrophy or An inherited eye disorder, which affects the

Macular Degeneration Macula, causing noticeable and substantial
(MD) vision loss.
Mach Bands An optical illusion consisting of grey bands

whose edges are differentiated from one
another, causing the Visual Cortex to trigger
edge-detecting receptive fields.
Metamorphopsia Is characterized by the perception of

distortions of vision, such as wavy, blurred
or distorted lines due to damage in the
visual pathway. It is also referred to as
Metamorphosia.
Metamorphosia Is characterized by the perception of

distortions of vision, such as wavy, blurred
or distorted lines due to damage in the
visual pathway. It is also referred to as
Metamorphopsia.
Ophthalmology A medical specialization that deals with the

eye, its physiology, anatomy and treatment
of ocular diseases.
Palimpsest Usually the erasing or wiping away of words

on the page of a manuscript, over which
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more text is written or images drawn. A re-
inscribing of the Visual Field. In this research
project it is closely aligned to Cortical
Completion.
Peripheral Vision Denotes what is seen in our side vision,

when looking straight ahead, outside the
area captured by Central Vision.
Retina The light-sensing layer of photo receptive

cells located at the back of the eye.
Retinal Ganglion Cell A type of neuron located near the surface of

(RGC) the Retina, which receives visual
information from photoreceptors via
bipolar and amacrine cells.
Retinal Pigment The pigmented cell layer adjacent to the

Epithelium (RPE) Retina.
Saccades Very rapid eye movements of the Fovea that

shift from one object to another. They are
usually imperceptible.
Scotoma A blind spot or partial loss of vision in an

area of the Visual Field that might otherwise
have normal Visual Acuity.
Stargardt’s Disease (STGD) A genetic form of juvenile Macular

Dystrophy causing progressive vision loss
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resulting in Legal Blindness. It is also known
as Fundus Flavimaculatus, although there is
some debate as to whether they are one and
the same disease.
Total Blindness The inability to see light or forms with either

eye.
Visual Acuity A standardized clinical measurement of the

Macula to determine details. Often given as
20/20 or 6/6, the scores indicate the
distance between someone’s ability to
determine detail as against an average
score. For example, if someone has a score
of 20/200, this means that the finest detail
this individual can see at 20 feet could be
seen by someone with ‘average’ vision at
200 feet away.
Visual Field Denotes the entire area seen when the eye
is directed forward, including what is seen
with Peripheral Vision.
Visual Cortex The part of the brain processing information

from the eyes. It comprises approximately
one third of the brain, and is divided into
areas from V1 onwards.
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Vision Loss A loss of vision that cannot be corrected
with prescription lenses or surgery, and
ranges from Low Vision to Total Blindness.
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PREFACE
1988
I’m standing in my kitchen, staring at a crumb. A white crumb on a blue counter.

In a second, the crumb is gone; in a minute it re-appears, just slightly to the left
of my gaze. Strange.
That night, I’m watching the big red numbers on the alarm clock by my bed
dissipating into a red and black haze. They do not re-appear until I turn away.
I was almost 24 and looking forward to art school, but within months my eyes
had deteriorated to the point of legal blindness. I had spent my life oblivious to
my genetic eye disease - I was a voracious reader, I loved to draw and paint, to
party, to drive, but it wasn’t long before all those things became much harder
to do.
The ophthalmologist was fascinated to see the ‘beaten copper’ at the back of
my eye - the result of dead and dying cells caused by a form of juvenile macular
dystrophy known as Fundus Flavimaculatus. It wasn’t something he had seen
before. His advice was simple and blunt - “Give up art, learn touch typing -
there’s no cure, you are going blind”. So I said goodbye to the little red car I had
fondly named ‘the tomato’, packed up my things and left art school.
This document is not an autobiography, it is a dissertation, but it was precisely

those unexpected life events that led to the genesis of this research project.
At the time of my diagnosis, no eye health care professional I consulted could

tell me to what extent I would lose my vision, or how long that would take. How
blind would I become? I needed to know, but they could give me no indication
in words or pictures.
Ignorance about the disease and its effects on vision came from all directions.
My family was in denial about genetic causes - it must have been my
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‘insufficient intake of carrot juice’. This eye disease was my fault; I must have
caused it. Moreover, people thought I didn’t ‘look’ blind; I was making it up to
get attention. The inability to drive a motor vehicle contributed to my unspoken
lack of social status - keenly felt by the time I reached motherhood. The other
women at mother’s group packed their children into their nice warm cars, while
I pushed the pram home or caught the tram. And then there was the explaining
to potential employers the nature of my disability, which I knew would cost me
any chance of securing employment. I wanted to shout, “I’m losing my eye
sight, not my intelligence”. The feeling of isolation and frustration at not being
able to express what I could and could not see, and the effect that was having
on my life, was significant.
If only someone had shown me how the disease might impact on the visual field
in the coming years. If only there had been a vision impaired role model out
there in the public arena, raising awareness of vision loss, someone I could have
looked to for support or encouragement.
Things have improved significantly since the 1980s and 90s for people with
vision loss. We have a better understanding of the genetic causes of macular
degeneration, an array of treatments, at least for people with Age Related
Macular Degeneration (AMD), and better screening programs for early
detection of different types of retinal diseases. We have greater community
awareness, websites, organizations, community groups, fund raising events,
worldwide research programs, and people in the public eye who are prepared
to speak out about their vision loss. Importantly, technology has improved the
quality of life for people with low vision. Access to texts, information and the
world, through the Internet and ‘text to speech’ software and eBooks, have
helped close some significant gaps.
But we still do not have a full understanding of how this disease appears from
the perspective of the patient. Medical textbooks, journals, and websites that
deal with issues of low vision and blindness continue to show the effect of
macular degeneration as a big black spot at the centre of the visual field. This
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representation is nowhere near my lived experience of vision loss, and only
perpetuates misinformation, which is helpful neither to the eye health care
profession nor to the wider community.
Patients remain largely unheard in discourses around low vision and blindness.
How can we truly understand the impact of eye disease unless we ask the
people who experience it? How do we have a working dialogue that seeks
greater understanding if the conversation is largely one-sided? Can we know
what macular dystrophy looks like until we see it for ourselves?
There might not have been someone to show me what my ‘blindness’ might
look like when I was first diagnosed, but I can do that now. There might not
have been role models to look to for support when I was first diagnosed, but
this project may offer encouragement to others.
The healthcare profession and the wider community need to recognise the
authority of experience that the patient can bring to the discussion. If one
person can articulate what Macular Dystrophy actually looks like to them, this
might make a world of difference to many people.
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TABLE OF CONTENTS
1 Introduction to the Project ................................................................... 1

1.1 Defining the void..................................................................................... 1
1.2 Genesis of the project ............................................................................. 1
1.3 Research purpose ................................................................................... 2
1.4 Scope and limitations of the project ........................................................ 3
1.5 Project overview ..................................................................................... 3
SECTION 1: EYE AND VISION .............................................................................. 7
2 Background - Locating the Void ............................................................. 9

2.1 Introduction ............................................................................................ 9
2.2 Locating the disease ................................................................................ 9
2.3 A brief overview of the structure of the eye .......................................... 11
2.3.1 Layers of the retina ................................................................................ 13
2.3.2 Photoreceptors ...................................................................................... 15
2.3.3 The macula and fovea ............................................................................ 17
2.3.4 The retinal pigment epithelium ............................................................. 18
2.3.5 ABC Transporters ................................................................................... 20
2.4 Fundus Flavimaculatus .......................................................................... 23
2.5 Stargardt’s Disease ............................................................................... 25
2.6 The visual system – from eye to brain ................................................... 30
2.6.1 The axons of retinal ganglion cells ......................................................... 30
2.6.2 The optic nerve and the brain ............................................................... 31
2.6.3 Visual fields ............................................................................................ 32
2.6.4 The visual field and visual axis ............................................................... 33
2.7 Measuring visual acuity – a brief over view ........................................... 34
2.7.1 Measuring vision loss............................................................................. 35
2.7.2 Classifications of vision .......................................................................... 37
2.7.3 Legal blindness ...................................................................................... 37
2.7.4 Spivey and Colenbrander ....................................................................... 37
2.7.5 WHO ICD-9 ............................................................................................. 39
2.7.6 ICO ......................................................................................................... 39
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2.7.7 Blurring the lines.................................................................................... 41
2.7.8 Functional vision and visual function .................................................... 41
2.7.9 Acuity less than 20/400 ......................................................................... 43
2.8 Assessing quality of life and the impact of vision loss ............................ 44
2.9 Chapter Summary ................................................................................. 46
3 Symptoms in the Visual Field .............................................................. 49

3.1 Introduction .......................................................................................... 49
3.2 Medical texts and journals .................................................................... 50
3.3 Websites that portray low vision .......................................................... 54
3.3.1 Australian websites ............................................................................... 54
3.3.1.1 Vision Australia ........................................................................................ 54
3.3.1.2 Macular Disease Foundation Australia .................................................... 56
3.3.1.3 Retina Australia ........................................................................................ 58
3.3.1.4 Stargardt’s Australia................................................................................. 59
3.3.2 International websites ........................................................................... 60
3.3.2.1 Foundation Fighting Blindness ................................................................. 60
3.3.2.2 MacularDegenerationUSA.com ............................................................... 61
3.3.2.3 University of Michigan Kellogg Eye Centre .............................................. 62
3.3.2.4 American Macular Degeneration Foundation.......................................... 62
3.3.2.5 Macular Degeneration New Zealand ....................................................... 64
3.3.2.6 Fork In the Road: Vision Rehabilitation Services ...................................... 65
3.4 Personal accounts of vision loss ............................................................ 66
3.4.1 Georgina Kleege..................................................................................... 67
3.4.2 Mared Jarman ........................................................................................ 68
3.4.3 Lee Allen ................................................................................................ 69
3.4.4 Neurologists describe their own visual symptoms ................................ 72
3.4.5 Adam Hahn’s portraits of macular degeneration .................................. 75
3.4.6 Paul Hackett........................................................................................... 77
3.5 Famous artists with poor vision ............................................................ 78
3.5.1 Edvard Munch........................................................................................ 78
3.5.2 Claude Monet ........................................................................................ 82
3.5.3 Edgar Degas ........................................................................................... 84
3.5.4 Working artists with low vision ............................................................. 86
3.6 Issues in simulating vision loss .............................................................. 89
3.7 The problem of the black spot ............................................................... 90
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3.8 Scotoma ................................................................................................ 92
3.9 Metamorphopsia ................................................................................ 100
3.9.1 Thomas Reid ........................................................................................ 101
3.10 Cortical completion – the 'filling in' phenomenon ............................... 102
3.11 Charles Bonnet Syndrome ................................................................... 104
3.12 Simulating central vision loss .............................................................. 106
3.13 Historic and contemporary ideas of blindness and low vision .............. 110
3.13.1 Medical and metaphoric blindness ................................................. 111
3.13.2 Portrayals of the blind ..................................................................... 115
3.13.3 Changing attitudes .......................................................................... 118
3.14 A personal view of vision loss.............................................................. 119
3.15 Chapter summary ............................................................................... 121
SECTION 2: ART ........................................................................................... 123
4 Methodologies.................................................................................. 125
4.1 Introduction ........................................................................................ 125
4.2 Art practice as research and the methodological framework ............... 125
4.2.1 Trustworthiness ................................................................................... 134
4.3 Artwork as data .................................................................................. 137
4.4 Art ...................................................................................................... 138
4.5 Embodied knowing and subjectivity .................................................... 140
4.6 Art practice as research and macular degeneration ............................. 143
4.7 Phenomenology .................................................................................. 144
4.8 Characteristics of the void ................................................................... 148
4.8.1 Absence ............................................................................................... 148
4.8.2 Erasure ................................................................................................. 148
4.8.3 Destruction and rupture ...................................................................... 149
4.8.4 Movement, vibration, pulsation .......................................................... 149
4.8.5 Loss of edge, focus, margins ................................................................ 149
4.8.6 Metamorphopsia ................................................................................. 149
4.8.7 Palimpsest ........................................................................................... 150
4.8.8 Entropy and vision loss ........................................................................ 150
4.8.9 Contrast and tone ................................................................................ 150
4.8.10 Colour .............................................................................................. 150
4.8.11 A fusing of figure and ground .......................................................... 151
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4.8.12 Scale ................................................................................................ 151
4.8.13 Light ................................................................................................. 151
4.8.14 Physical, environmental and psychological factors ......................... 151
4.8.15 Facelessness and wordlessness ....................................................... 152
4.9 Philosophy and vision loss................................................................... 152
4.9.1 Phenomenological aspects of absence ................................................ 152
4.9.2 Erasure ................................................................................................. 155
4.9.3 Derrida, art practice and blindness ..................................................... 156
4.10 Activities of daily living ....................................................................... 162
4.11 Painting .............................................................................................. 163
4.12 Drawing .............................................................................................. 164
4.13 Printmaking ........................................................................................ 164
4.14 Photography ....................................................................................... 165
4.15 Animation ........................................................................................... 166
4.16 Doing research with low vision ........................................................... 169
4.17 Chapter summary ............................................................................... 172
5 Expanding on methodology issues .................................................... 173

5.1 Introduction to the chapter ................................................................. 173
5.2 Photographing the void....................................................................... 173
5.3 Photography and absence ................................................................... 177
5.4 Animating the void ............................................................................. 179
5.5 Destruction, rupture and paper ........................................................... 184
5.6 Colour ................................................................................................. 185
5.7 Facelessness ....................................................................................... 186
5.8 Wordlessness ...................................................................................... 192
5.9 The surprising monotype .................................................................... 196
5.10 Chapter summary ............................................................................... 203
SECTION 3: VISUAL PERCEPTION ..................................................................... 205
6 Grids ................................................................................................. 207

6.2 Grids ................................................................................................... 208
6.2.1 Grids, art and optics............................................................................. 208
6.3 Clinical testing of the macula .............................................................. 211
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6.4 Amsler and the grid ............................................................................. 211
6.4.1 The grids 1 - 7 ...................................................................................... 213
6.4.2 Guiding questions ................................................................................ 215
6.4.3 Subjective awareness and the butterfly net ........................................ 216
6.4.4 Qualitative assessments ...................................................................... 216
6.5 Art and the grid ................................................................................... 220
6.5.1 John Elderfield ..................................................................................... 220
6.5.2 Rosalind Krauss .................................................................................... 224
6.5.3 Munch’s grids ...................................................................................... 228
6.5.4 Paul Hackett......................................................................................... 231
6.5.5 My art works and the grid ................................................................... 233
6.6 Chapter summary ............................................................................... 242
7 Visual Perception .............................................................................. 243

7.2 The processes of human vision ............................................................ 243
7.2.1 Receptive fields.................................................................................... 244
7.3 An empirical theory of visual perception ............................................. 251
7.4 Exploring the brain with visual illusion ................................................ 259
7.5 Theories of visual perception, art and the research project ................. 268
7.6 Chapter summary ............................................................................... 283
8 Conclusions and Contributions .......................................................... 285

8.1 Conclusions and contributions ............................................................ 285
8.2 Initiating dialogue ............................................................................... 289
9 Appendices ....................................................................................... 291

9.1 Artworks developed for this research ................................................. 293
9.1.1 PORTRAITS (FACELESSNESS) ................................................................ 295
9.1.1.1 Children on the hammock ...................................................................... 295
9.1.1.2 Out to dinner ......................................................................................... 297
9.1.1.3 Portrait of Cesca..................................................................................... 299
9.1.1.4 Portrait of Jill .......................................................................................... 301
9.1.1.5 Portrait of Germana ............................................................................... 303
9.1.1.6 Portrait of Paul ....................................................................................... 305
9.1.1.7 Van Gogh self portrait as I see him ........................................................ 307
9.1.1.8 Mona Lisa as I see her ............................................................................ 309
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9.1.1.9 Dr Amsler wearing his grid ..................................................................... 311
9.1.1.10 Progression of Stargardt’s disease over Amsler Grid ............................. 313
9.1.1.11 Portraits of Dr Stargardt (1) and (2) ....................................................... 315
9.1.1.12 Progressive destruction over Dr Stargardt’s face .................................. 317
9.1.2 SELF PORTRAITS ................................................................................... 319
9.1.2.1 Self portrait ............................................................................................ 319
9.1.2.2 Measuring the scotoma, mapping the void ........................................... 321
9.1.2.3 Self portrait with iPad ............................................................................ 323
9.1.2.4 Self portrait in a purple jacket ............................................................... 325
9.1.2.5 Self portrait by the window ................................................................... 327
9.1.2.6 Self portrait with iPhone 1 ..................................................................... 329
9.1.2.9 Blind is the new black ............................................................................ 335
9.1.2.10 Self portrait in the mirror ....................................................................... 337
9.1.3 PET PORTRAITS .................................................................................... 339
9.1.3.1 Lizzie in the fog ...................................................................................... 339
9.1.3.2 Lizzie’s disappearing head...................................................................... 341
9.1.3.3 Stills of Lizzie walking out of scotoma .................................................... 343
9.1.3.4 Walking the dog ..................................................................................... 345
9.1.3.5 Max melting into the mat ...................................................................... 347
9.1.4 ACTIVITIES OF DAILY LIVING ................................................................ 349
9.1.4.1 Holding the blind spot ............................................................................ 349
9.1.4.2 Cutting the tomato ................................................................................ 351
9.1.4.3 Cutting chicken fillets ............................................................................. 353
9.1.4.4 Seven crackers on a red board ............................................................... 355
9.1.4.5 The case of the missing biscotti ............................................................. 357
9.1.4.6 The coffee cup ....................................................................................... 359
9.1.4.7 The case of the missing tomato ............................................................. 361
9.1.4.8 Bowl and spoon ..................................................................................... 363
9.1.4.9 Plate, knife and fork ............................................................................... 365
9.1.4.10 The Vegemite jar .................................................................................... 367
9.1.4.11 The cup................................................................................................... 369
9.1.4.12 The Cheerios box.................................................................................... 371
9.1.5 TRAVELLING ......................................................................................... 373
9.1.5.1 St Kilda Rd .............................................................................................. 373
9.1.5.2 Waiting for the tram .............................................................................. 375
9.1.5.3 Waiting for the tram with and without background .............................. 377
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9.1.5.4 Tram sign at Federation Square ............................................................. 379
9.1.5.5 Capturing the scotoma with a grid......................................................... 381
9.1.6 STREETSCAPES ..................................................................................... 383
9.1.6.1 St Patrick’s Cathedral spire, Melbourne ................................................ 383
9.1.6.2 Reading the street sign .......................................................................... 385
9.1.6.3 Federation Square 1 ............................................................................... 387
9.1.6.4 Federation Square 2 ............................................................................... 389
9.1.6.5 Federation Square entrance 1 ............................................................... 391
9.1.6.6 Federation Square entrance 2 ............................................................... 393
9.1.6.7 Stairs at Federation Square .................................................................... 395
9.1.6.8 Atrium of Federation Square ................................................................. 397
9.1.6.9 Interior of Federation Square ................................................................ 399
9.1.6.10 Federation Square streetscape 1 ........................................................... 401
9.1.6.11 Federation Square streetscape 2 ........................................................... 403
9.1.6.12 Bus stop ................................................................................................. 405
9.1.7 TEXTS (WORDLESSNESS) ...................................................................... 407
9.1.7.1 Reading the eye chart ............................................................................ 407
9.1.7.2 iPhone agreement.................................................................................. 409
9.1.7.3 Ticketing pad .......................................................................................... 411
9.1.7.4 Text with scotoma and orange ring 1 .................................................... 413
9.1.7.5 Text with scotoma and orange ring 2 .................................................... 415
9.1.7.6 Computer screen and finger .................................................................. 417
9.1.8 ANIMATIONS ....................................................................................... 419
9.1.8.1 Taking Lizzie for a walk........................................................................... 419
9.1.8.2 Bus movie ............................................................................................... 421
9.1.8.3 Driving with Bev ..................................................................................... 423
9.1.8.4 St Kilda Road animation ......................................................................... 425
9.1.8.5 Waiting for the bus animation ............................................................... 427
9.1.8.6 On the Overpass, with oncoming traffic ................................................ 429
9.1.8.7 Max animation ....................................................................................... 431
9.1.8.8 Hand waving over grid animation .......................................................... 433
9.1.8.9 Hand moving through blind spot animation .......................................... 435
9.1.8.10 Capturing scotoma - Federation Square sign animation ........................ 437
9.1.8.11 Cesca on the swing animation ............................................................... 439
9.1.8.12 Cesca on the swing with blue background showing ‘filling in’ only ....... 441
9.1.8.13 Lizzie in a fog animation ......................................................................... 443
9.1.8.14 Dr Stargardt animation .......................................................................... 445
9.1.8.15 Teapot animation ................................................................................... 447
xxv
9.2 Goldmann field tests ........................................................................... 449
9.3 Retinal images .................................................................................... 451
9.4 OCT scan ............................................................................................. 453
10 Bibliography .................................................................................. 455
xxvi
LIST OF FIGURES
Figure 1: Path of light through the eye ............................................................ 15
Figure 2: Diagram showing distribution of photoreceptor cells....................... 16
Figure 3: An example of a LogMAR chart ......................................................... 36
Figure 4: Triangulation in the research project .............................................. 136
Figure 5: Schema of research structure ......................................................... 167
Figure 6: Example of characteristic of macular dystrophy and processes of art

making .................................................................................................... 169
Figure 7: Amsler grid no. 1 ............................................................................. 215
Figure 8: Diagram of visual system................................................................. 247
Figure 9: Diagram showing paths of visual system from each eye ................ 249
Figure 10: The Inverse Problem ..................................................................... 253
Figure 11: Grey squares illusion ..................................................................... 254
Figure 12: An example of the Craik-O'Brien-Cornsweet Effect. ..................... 255
Figure 13: The Checker Shadow Illusion developed by Ted Adelson. ............ 256
Figure 14: The Rubik’s Cube coloured squares illusion .................................. 256
xxvii
xxviii
LIST OF TABLES
Table 1: Characteristics of Macular Dystrophy and art making methods ...... 168
xxix
xxx
LIST OF ILLUSTRATIONS
Illustration 1: Vision Australia simulation of central vision loss ....................... 55
Illustration 2: Vision Australia simulation of AMD ........................................... 56
Illustration 3: Macular Disease Foundation Australia simulation of central

vision loss ................................................................................................. 57
Illustration 4: Macular Disease Foundation Australia simulation of Macular

Dystrophy ................................................................................................. 57
Illustration 5: Retina Australia simulation of central vision loss ...................... 58
Illustration 6: Stargardt's Australia simulation of Stargardt's Disease ............. 59
Illustration 7: Foundation Fighting Blindness simulation of Macular

Degeneration............................................................................................ 60
Illustration 8: Macular Degeneration New Zealand simulation of Macular

Degeneration............................................................................................ 65
Illustration 9: Fork In The Road illustration of Macular Degeneration ............. 66
Illustration 10: Lee Allen drawings of AMD symptoms .................................... 71
Illustration 11: Oliver Sack's drawing of scotoma over a grid .......................... 73
Illustration 12 : Adam Hahn, 'Dee', 2008, 45x57 cm, oil on canvas ................. 77
illustration 13: Edvard Munch, The Artist's Retina, 1930 ................................. 79
illustration 14: Edvard Munch, drawing of a blind spot over a grid ................. 82
illustration 15: OCT scan, the researcher’s eye ................................................ 90
illustration 16: Seeing Without Sight, simulation of a blind spot ..................... 98
xxxi
illustration 17: Simulating central vision loss using Adobe After Effects, with
text and faces ......................................................................................... 108
illustration 18: Bruegel , Blind Leading the Blind............................................ 116
illustration 19: Lewis W Hine, Blind Beggar, Lawton, Oklahoma , 1917 ........ 117
Illustration 20: The case of the missing tomato ............................................. 156
Illustration 21: After Lucas van Leyden, Christ Healing a Blind Man, Louvre
Museum ................................................................................................. 161
Illustration 22: Children on the hammock – unaltered photograph .............. 174
illustration 23: Children on the Hammock ..................................................... 175
Illustration 24: Lizzie's missing head .............................................................. 176
Illustration 25: Seven crackers on a red board ............................................... 177
illustration 26: Stills from an animation, walking Lizzie, through the void .... 180
Illustration 27: Stills from St Kilda Rd, showing the scotoma within its context
and without ............................................................................................ 183
Illustration 28: Drawing Dr Stargardt, and destroying paper ......................... 185
Illustration 29: Missing Mona Lisa and van Gogh's head ............................... 188
Illustration 30: Measuring the scotoma - self portraits with white background
................................................................................................................ 189
Illustration 31: Self portrait with iPhone ........................................................ 190
Illustration 32: Tram stop, Federation Square, scotoma over signage .......... 194
Illustration 33: Text with finger and scotoma ................................................ 196
illustration 34: Stages of the teapot painting (oil on board) .......................... 199
xxxii
Illustration 35: Durer Grid .............................................................................. 209
Illustration 36: Forster Grid ............................................................................ 210
Illustration 37: Sol LeWitt, Nine-Part Modular Cube, 1977 ............................ 221
Illustration 38: Agnes Martin, Tremolo, 1962 ................................................ 222
Illustration 39: Piet Mondrian, Victory Boogie Woogie, (1942 - 1944 .......... 226
Illustration 40: Edvard Munch drawings of scotoma on a lamp post, and a

scotoma with words, 1930 ..................................................................... 230
Illustration 41: Paul Hackett "8091" ............................................................... 231
Illustration 42: From a series of grid paintings. 2013 ..................................... 233
Illustration 43: My coloured circular grids, with and without scotoma ......... 238
Illustration 44: Rapid blinking into the scotoma ............................................ 239
xxxiii
xxxiv
1 Introduction to the Project
1.1 Defining the void
At the beginning of this project, nothing seemed clear - from the name of my
disease, to the term I should use to describe my level of visual acuity.
As I began the research, more questions arose – how does the eye work, and
where and how in the eye does this disease manifest? How much vision loss
can it cause, and how do we measure this? What are the most common
symptoms of this disease? Why does my vision loss, ever changing and
dynamic, seem to look so different to the static representations of central vision
loss in texts, journals, websites and advertising campaigns? Above all, how can
I describe this phenomenon?
The enigmatic visual symptoms of my eye condition, which caused objects to

blend into one another around a centre of absence, was in fact a perfect symbol
of this confusion. Mysterious, nebulous, and mercurial, my experience of vision
loss and the issues that surround it was indeed a void, on many levels.
1.2 Genesis of the project
Although there seemed to be no indication in my family history of the presence

of inheritable eye disease, at the age of 24 while undergoing tertiary studies in
fine art, I was diagnosed with Fundus Flavimaculatus, a genetic and incurable
form of juvenile macular dystrophy which resulted in diminished visual acuity
and severe low vision which is termed as legal blindness.
The impact of this disease was greatly felt, both at the time and in the following
years: art studies were abandoned, as was the ability to drive, or read books or
1
computer screens without magnification aids, but I learned to adapt despite
the progression of the disease.
Eventually I returned to art studies having continued to paint despite declining

vision. I found that knowledge accrued over years of art making had not
diminished, even though my eyesight had.
Although I thought I was in the unusual position of being a visual artist who is
defined as ‘legally blind’, a quick survey of art history revealed that I was not
alone. Many artists, both historically and contemporarily1 have worked despite
experiencing varying degrees of vision loss. However, no artist with visual
impairment seems to have portrayed what he or she actually saw through
diseased eyes. An exception to this is Edward Munch, who mapped his scotoma
on a rudimentary grid, enabling an insight into what his particular eye disease
looked like from his perspective.
On occasions, images or descriptions would arise in the course of daily life

which would correlate with my experience of vision loss, creating a flash of
recognition like a fleeting image caught in a mirror.
It was in these gaps, between chance reminders of how the disease appeared
to me, and how it didn’t look in medical journals or websites, that the seeds of
this project grew.
1.3 Research purpose
This research project has a specific purpose - to articulate, as accurately as

possible, the effects of macular dystrophy upon my visual field through the
framework of my visual art practice.
1 Some excellent contemporary career artists, with degrees of vision loss ranging from
severe to moderate, are interviewed about their art practice in the book, 20/20
Blindsight, by William Busser Howell, (2013), New York, New York, self published.
2
This research is based on a simple question, “what does blindness or low vision
look like?” or more specifically, “what does macular dystrophy look like to me?”
Prior to commencing this research project, I had noticed an absence of first

hand patient perspectives and misrepresentations of how the disease
appeared.
These two issues may be interrelated, and I determined that if I could give an
eyewitness account of the effects of macular dystrophy, and replace those
misrepresentations with a more faithful articulation of how it appeared to me,
then I might be able to address these two deficiencies at the same time.
1.4 Scope and limitations of the project
The scope of this research project is limited to a subjective examination of the

entoptic phenomena caused by Stargardt’s Disease (also referred to as Fundus
Flavimaculatus) as explored through a visual art practice.
The images that result from this personal exploration may be unique to me, or
they may be very common experiences for others with similar diseases. While
this study does not investigate the perspectives of others, the findings of this
particular project may prove useful to future inquiries.
1.5 Project overview
As a practice led research project, this investigation, and its results, are divided
into two parts.
The first part, the thesis, is a body of work consisting of 95 artworks (paintings,
drawings, prints, photographs and digital works), resulting from my inquiry into
the effects of macular disease upon the visual field. Some artworks are shown
throughout this dissertation, while others have formed part of an examination
exhibition. The complete collection of artworks is provided in section 9.1
Artworks Developed for this Research.
3
The second part of the project is this dissertation, which I have divided into
three sections. Section 1, Eye and Vision, consists of two chapters. The first
chapter includes: an overview of the physiology of the eye and of macular
disease; an overview of the visual system; a discussion of the measurements of
visual acuity and levels of low vision; and an examination of activities of daily
living with vision loss.
The second chapter examines:
• representations of macular dystrophy in medical journals, websites, and

popular media;
• first person accounts of macular dystrophy;
• associated symptoms of macular vision loss and the difficulty in depicting
them;
• a review on the absence of the 'blind voice' in the discourses of blindness;
• identification of the gaps in the literature; and
• confirmation of the research purpose.
Section 2, Art, consists of a methodology chapter that outlines the structure of

the study, studio practices and philosophical frameworks. This chapter
identifies characteristics of macular dystrophy as I have experienced them, and
methods of art practice used in exploring these characteristics. I have also
included a section on researching, reading and art making with low vision. The
second chapter in this section further explores these characteristics of central
vision loss, while identifying themes of art in relation to the project, and
discoveries I made in the process of research.
Section 3, Visual Perception, examines the connections between Stargardt’s

Disease and my artwork in relation to visual perception through an examination
of the grid in both art and ophthalmology. The second chapter in this section
examines theories of visual perception and discussions around these theories
in relation to my experience of central vision loss and the research project. This
4
section is followed by a separate chapter discussing conclusions, thoughts on
further research, and possible contributions of the project.
The Appendices contain: the artworks created in this research project; the
results from the researcher’s OCT scans taken at the beginning and end of this
research project; and the researcher’s visual field test result conducted mid-
way through this research project.
5
6
SECTION 1: EYE AND VISION
7
8
2 Background - Locating the Void
2.1 Introduction
To better understand the experience of visual field loss brought about by

macular dystrophy, it is necessary to first understand the disease as a medical
condition.
This chapter begins with a brief description of the eye and visual system so that
there is an understanding of how the disease manifests at a cellular level. This
is followed by a review of Fundus Flavimaculatus tracing its discovery as a
distinct disease before its general acceptance as a type of Stargardt’s Disease.
Aspects of visual acuity measurements and assessment of low vision and
blindness will be reviewed, examining the terminology, and discussing the
difficulties in establishing such parameters. Understanding where the
symptoms of central vision loss caused by Stargardt’s Disease might sit on the
continuum from ‘normal’ to ‘blind’ is vital, if the efficacy of clinical
measurements can be compared with the outcomes of the studio research.
2.2 Locating the disease
Fundus Flavimaculatus is one of a number of inherited diseases of the human

eye. Primarily affecting the central region, or macula of the eyes of children and
young adults, it is classified as a progressive, bilateral form of juvenile macular
9
degeneration. Worldwide prevalence is at about one in 10,000,2,3 and although
it is a common form of juvenile onset hereditary macular dystrophy,4,5 it is
classified as a relatively rare disease.6 As a genetic disorder, it usually follows a
7,8
pattern of autosomal recessive inheritance. Where both parents carry the
2 Fujinami, K., N. Lois, A. E. Davidson, D. S. Mackay, C. R. Hogg, E. M. Stone, K. Tsunoda,

K. Tsubota, C. Bunce, A. G. Robson, A. T. Moore, A. R. Webster, G. E. Holder and M.
Michaelides (2013). "A Longitudinal Study of Stargardt Disease: Clinical and
Electrophysiologic Assessment, Progression, and Genotype Correlations." American
Journal of Ophthalmology 155(6): 1075-1088.e1013
3 Haji Abdollahi, S. and T. Hirose (2013). "Stargardt-Fundus flavimaculatus: recent

advancements and treatment." Semin Ophthalmol 28(5-6): 372-376.
4 Some studies cite Stargardt’s Disease as possibly the most common hereditary recessive
macular dystrophy, with an estimated frequency of 1 out of 8,000 to 10,000 in the
United States. See Allikmets, R. (2007). Stargardt Disease. Retinal Degenerations. J.
Tombran-Tink and C. Barnstable, Humana Press: 105-118.
5 Fishman, G. A. (2010). "Historical evolution in the understanding of Stargardt macular

dystrophy." Ophthalmic Genet 31(4): 183-189, page 183
6 Diseases with an incidence rate of 1 in 10,000 are considered to be rare rather than
common. The World Health Organization (WHO), estimates 285 million people
worldwide are visually impaired, of these 39 million are designated as blind, and 246 as
having low vision. An approximate 90% of the world's visually impaired live in developing
countries. Source: WHO Visual Impairment and Blindness
Fact Sheet N°282, Updated October 2013, accessed January 31 2014, at

http://www.who.int/mediacentre/factsheets/fs282/en/
7 There is also a dominant Stargardt-like form of macular dystrophy, which is caused by a

mutation of the ELOVL4, gene. A discussion of both types of Stargardt’s and inheritance
patterns can be found in Rattner, A. and J. Nathans (2006). "Macular degeneration:
recent advances and therapeutic opportunities." Nat Rev Neurosci 7(11): 860-872.
8 There is also a form similar to Stargardt’s Disease that is autosomal dominant. See
Edwards, Albert O., Anita Miedziak, Tamara Vrabec, Janneke Verhoeven, Ted S. Acott,
Richard G. Weleber, and Larry A. Donoso. 1999. "Autosomal dominant Stargardt-like
macular dystrophy: I. Clinical characterization, longitudinal follow-up, and evidence for
a common ancestry in families linked to chromosome 6q14." American Journal of
Ophthalmology 127 (4):426-435. doi: http://dx.doi.org/10.1016/S0002-9394(98)00331-
6.
10
faulty gene, there is a one in four chance of the child developing the disorder,9
affecting either male or females.
The macula plays a crucial role in visual acuity. It deals with fine detail, reading,
driving, and colour perception among many other things. As a result of this
disease, the macula deteriorates, leaving just blurry peripheral vision in its
wake. These types of effects on the visual field can be very disruptive to the
lives of children, teenagers and young adults, often striking at a most crucial
time of social and physical development. In order to understand how such a
small area of the eye can have such a devastating impact on the visual field, the
structure of the eye must be discussed.
2.3 A brief overview of the structure of the eye
The eyeball is designed to process light patterns and transmit this information
to the brain via the optic nerve.
The human eye has three major layers: the fibrous tunic containing the cornea
and sclera; the vascular tunic which includes the iris, ciliary body and choroid;
and the neural tunic, the retina which lies along the back two-thirds of the
innermost layer of the eye.
The main function of the fibrous and vascular tunics is to keep images passing
from the outside world firmly anchored, and focused, on the retina.10
9 For an explanation of autosomal recessive inheritance patterns in eye disease, see the
Retina Australia website at
http://www.retinaaustralia.com.au/genetic_inheritance.htm, accessed February 2,
2014.
10 Hubel, David H. 1988. Eye, brain, and vision / David H. Hubel, Scientific American Library
series: no. 22: New York: Scientific American Library : Distributed by W.H. Freeman,
c1988. Bibliographies Non-fiction, page 34
11
Particles of light (photons) are refracted as they pass through the cornea to the
pupil (whose size is moderated by the iris), and then through the lens, where
the image is inverted onto the retina.
While the lens, pupil and other non-retinal parts play an essential part in
maintaining good vision, in this overview the focus will be predominately on
the retina as it plays a crucial role in the manifestation of macular disease.
The retina, only about half a millimetre thick11 and, in actuality, a part of the
brain and connected to it via the optic nerve, is an intricate structure. It is
comprised of two basic parts - a pigmented part and a translucent, neural part,
which, combined, make up (at least)12 ten layers of tissue and cells.
The retina requires a very rich blood supply (provided by the choroid), and
consumes an enormous amount of oxygen through its photoreceptors, making
it highly vulnerable to photo oxidative stress if mechanisms are not in place to
protect it. The retina is the only neural tissue in the body exposed directly to
light.13
Light must pass through the layers of translucent cells in the neural part of the
retina (which faces the posterior cavity of the eye), in order to reach the very
light sensitive photoreceptor cells positioned near the pigmented part at the
very back of the eye (facing the brain). This may seem like a somewhat
backward configuration. However, the melanin-rich pigmented part might be
arranged in this way in order to absorb the light that passes through the neural
11 Webvision: the organization of the retina and visual system, United States National
Library of Medicine, United States National Library of Medicine. Accessed February 7,
2014 from http://www.intute.ac.uk/cgi-bin/fullrecord.pl?handle=20090122-12255445
12 A new layer, just behind the cornea, was discovered in 2013. See Dua, HS, LA Faraj, DG
Said, T Gray, and J Lowe. "Human Corneal Anatomy Redefined A Novel Pre-Descemet's
Layer (Dua's Layer)." Ophthalmology 120, 9: 1778-1785.
13 Rattner, A. and J. Nathans (2006). "Macular degeneration: recent advances and

therapeutic opportunities." Nat Rev Neurosci 7(11): 860-872
12
part, stopping any excess from bouncing back out again, while also restoring
and replenishing the light bleached photoreceptor cells positioned nearby.14
2.3.1 Layers of the retina
If we were to look into the eye from the direction in which the light enters the
pupil, we would first come to the Retinal Ganglion Cells (RGCs). The nerve fibres
(axons) of these cells cross the surface of the retina and gather together in a
bundle to form the optic disc, which leads on to the optic nerve and the brain.
The RGCs convey the signals detected by the photoreceptor cells, and send
them on to the optic nerve; they are the output neurons of the retina.15 There
are about 1 million RGCs in each eye.
Behind this layer, running in order, are the amacrine cells, then the bipolar cells,
and then the horizontal cells which all sit in front of the photoreceptor cells.
Bipolar cells receive input from the photoreceptors cells and many of them feed
directly into the retinal ganglion cells. Horizontal cells link photoreceptors and
bipolar cells with long connections that run parallel to the retinal layer, while
amacrine cells link bipolar and retinal ganglion cells.
Horizontal and amacrine cells enable the communication between

photoreceptors and ganglion cells, and alter the sensitivity of the retina, like
adjusting the contrast on the TV. The amacrine and horizontal cells also pick up
signals transmitted by the photoreceptor cells and spread those signals laterally
series: no. 22: New York: Scientific American Library: Distributed by W.H. Freeman,
1988, page 36
15 Purves, Dale, and R. Beau Lotto. 2011. Why we see what we do redux : a wholly empirical
theory of vision. Sunderland, Mass.: Sinauer Associates, 2011. Bibliographies Non-
fiction, page 205
13
across the surface of the retina,16 while the bipolar cells pass the signal from
the photoreceptor cells to RGCs in a more linear path. In this way, the
information flow of signals to the brain follows both a direct and an indirect
path through the retina.17
When a cell signal follows the direct path, a single photoreceptor, or just a few,
can synapse (connect and communicate) with a bipolar cell, and just a single
bipolar cell, or even a few, can synapse with one RGC. The retinal signals
organize themselves like this to overcome the disproportionate ratio of
photoreceptors to ganglion cells in order to maintain good visual acuity – while
there are approximately 130 million photoreceptors in each eye that need to
send signals back to the optic nerve, there are only 1 million RGCs to serve
them.18 Understanding how receptive fields work explains much about how
theory of vision. Sunderland, Mass.: Sinauer Associates, 2011. Bibliographies Non-
fiction, page 205
c1988. Bibliographies Non-fiction, page 37- 38
18 A receptive field can refer to the specific receptors that feed information to a cell. But
research on RGCs in the second half of the 20th century led to the realization that
receptive fields have substructures, and that by stimulating different parts of this field,
the cell could give either excitory or inhibitory responses. Furthermore, cells, including
RGC’s, can be on centre or off centre, triggering different behaviours, depending on
where the stimulus falls on the receptive field. David Hubel discusses these discoveries
in Hubel, David H. 1988. Eye, brain, and vision / David H. Hubel, Scientific American
Library series: no. 22:, pages 39-46.
Purves and Lotto define the receptive field of a visual neuron (measured in degrees), as
the region of visual space within which stimuli causes the cell to respond by increasing
or decreasing its activity. See Purves, Dale, and R. Beau Lotto. 2011. Why we see what
we do redux: a wholly empirical theory of vision / Dale Purves, R. Beau Lotto:
Sunderland, Mass.: Sinauer Associates, 2011, page 217
14
cells send messages to the brain. This is further explored in chapter 7, Visual
Perception.
light hits the retina
retinal ganglion cells (RGC)
amacrine cells
bipolar cells
horizontal cells
photoreceptor rods and cones
retinal pigment epithelium (RPE)
signals sent by photoreceptor rods and cones
signals sent along neural pathways back to retinal ganglion cells
axons of RGCs pass signals to optic disc then optic nerve to brain
Figure 1: Path of light through the eye
Figure 1 is a simplified diagram of the path of light through the layers of the eye which shows
the path that light particles (photons) take to reach the photoreceptor cells. The signals
received by photoreceptor rods and cones pass this information along a cellular chain to the
axons of the ganglion cells, which gather at the optic disc, and in turn send these signals along
the optic nerve at the back of the eyeball to the brain.
2.3.2 Photoreceptors
The photoreceptors lie in the farthest layer of the neural part of the retina.
There are two types - rods and cones, named for the shapes they resemble in
structure.
15
Photoreceptor rods are extremely light sensitive, enabling us to see in dim
conditions, such as twilight and moonlight, while photoreceptor cones, though
not as light sensitive, facilitate colour vision and are optimised in daylight.
Photoreceptor rods are responsible for scotopic vision, while photoreceptor
cones are responsible for photopic vision.
Each cone has its own specific task of detecting red, blue or green wavelengths
of light. It is the cones that also facilitate good visual acuity - rods do not enable
the finer detail of images and do not detect colour.
120 million rods are distributed across the retina, but most of the cones - 6
million of them - lie predominantly at the centre of the retina, in an area known
as the macula lutea (Latin for ‘yellow spot’).
Figure 2: Diagram showing distribution of photoreceptor cells
Figure 2 is a diagram showing the distribution of photoreceptor rods and cones across the
retina. At point 0 degrees is the foveola, where photoreceptor cones are most tightly packed
and photoreceptor rods are absent. The blind spot in this diagram corresponds with the
position of the optic disk, positioned further away from the centre of the retina, and
containing no photoreceptors at all. Source: https://www.e-
education.psu.edu/eme810/node/461
16
2.3.3 The macula and fovea
The macula, at the central part of the retina, is oval shaped and approximately
6mm in diameter. Despite its comparatively small size in relation to the rest of
the retina, it is responsible for most of our useful (photopic) vision. It derives
its yellow colouring from carotenoids metabolised in the diet. The yellow
colouring of the macula enables it to absorb excess blue and violet
wavelengths, protecting the delicate photoreceptor cells from excessive light
waves, almost like a tiny, internal pair of sunglasses.
Near the centre of the macula, (at the point directly behind the lens of the eye)
is a small pit approximately 1.5 mm in diameter. This is the fovea centralis, that
contains the highest frequency of photoreceptor cones in the retina and is
responsible for our sharpest vision. At the absolute centre of this region is the
foveola.19 There are virtually no rods at the fovea.
The outer layers of the retina (the bipolar, amacrine and horizontal cells) are
pushed aside in the foveal area, exposing the central cones so that they lie at
the very front – this is what forms the shallow pit of the fovea.20 It is also here
at the fovea that the most direct path of neural signalling is present, where the
ratio of communication between photoreceptor and RGC is almost 1:1.21 The
density of RPE cells is also greatest at the fovea, gradually declining as it falls
away into the periphery of the retina.22
theory of vision. Beau Lotto: Sunderland, Mass: Sinauer Associates
series: no. 22: New York: Scientific American Library: Distributed by W.H. Freeman.
21 Ibid.
22 Westerfeld, C. (2010). "ABC transporters in ophthalmic disease." Methods Mol Biol 637:
221-230
17
2.3.4 The retinal pigment epithelium
Finally, the light ends its journey into the eye where the photoreceptors
synapse with the retinal pigment epithelium (RPE) layer, a collection of pigment
granules that sits in the pigmented band between the photoreceptor cells and
Bruch’s membrane and the blood-rich choroid.
The interaction between photoreceptor cells and the RPE layer is crucial to the
vision of all types of eyes in the animal kingdom.23 As it plays a critical role in
the onset of macular diseases of humans, it is worthy of closer examination in
respect to its implications in Stargardt’s Disease.24 For this reason the RPE layer
will be discussed in relation to the photoreceptor cells, and their interaction
during stages of macular degeneration.25
In order to understand what is happening on a cellular level in Stargardt’s

Disease, a closer look at the way photoreceptor rods and cones operates in
relation to the RPE layer is required.
23 Strauss O. The Retinal Pigment Epithelium. In: Kolb H, Fernandez E, Nelson R, editors.
Webvision: The Organization of the Retina and Visual System. Salt Lake City (UT):
University of Utah Health Sciences Center; 1995. Available from:
http://www.ncbi.nlm.nih.gov/books/NBK54392
24 Chen, Y. M., K. Ratnam, S. M. Sundquist, B. Lujan, R. Ayyagari, V. H. Gudiseva, A.

Roorda, and J. L. Duncan. 2011. "- Cone Photoreceptor Abnormalities Correlate with
Vision Loss in Patients with Stargardt Disease." - 52 (- 6):- 3292, and Conley, Shannon
M., Xue Cai, Rasha Makkia, Yalin Wu, Janet R. Sparrow, and Muna I. Naash. 2012.
"Increased cone sensitivity to ABCA4 deficiency provides insight into macular vision
loss in Stargardt's dystrophy." BBA - Molecular Basis of Disease 1822:1169-1179. doi:
10.1016/j.bbadis.2011.10.007.
25 Bruch’s membrane is also affected in cases of Stargardt's Disease. See Park, Sung Pyo,
Stanley Chang, Rando Allikmets, R. Theodore Smith, Tomas R. Burke, Emily Gregory-
Roberts, and Stephen H. Tsang. 2012. "Disruption in Bruch membrane in patients with
Stargardt disease." Ophthalmic Genetics 33 (1):49-52. doi:
10.3109/13816810.2011.628358.
18
Both photoreceptor rods and cones contain inner and outer layers of cells and
segments, each assigned with specific functions for transporting signals to the
brain, as well as replenishing cells.
It is the comparison of both the intensity and frequency of activity of one type
of cone against another, and the wavelength each detects, that determines our
ability to see colour - the neural signals themselves are only binary (on or off)
and do not carry colour information in themselves.26
Throughout the flurry of neural exchange, the photoreceptor rods and cones
continuously produce new discs of visual pigment (at a rate of about 10 per
day), beginning at the base and progressing up through the outer segment of
the cells towards the tip, where they are then shed as a small drop of cytoplasm.
These small droplets are then absorbed by the pigment cells in the RPE layer.
The RPE layer has many critical functions in the maintenance of the visual
system, including: light absorption; protection from both photo-oxidation on
the neural side and excessive oxygenation from the choroid; and supplying
nutrients such as glucose, retinal and omega rich fatty acids to build and enrich
the photoreceptor cells and maintain immune health in the cellular
environment of the eye. The free radicals produced by the shedding of the
outer segment of the photoreceptor rods and cones also contribute to the load
taken on by the RPE layer. Incredibly, the daily shedding of photoreceptor rim
tips, phagocytosis of wastes, and vitamin A conversions, continues over a
lifetime with little or no turnover of the RPE cells themselves.27
26 Livingstone, Margaret. 2002. Vision and art: the biology of seeing: New York: Harry N.
Abrams, 2002.

therapeutic opportunities." Nat Rev Neurosci 7(11): 860-872, page 861
19
2.3.5 ABC Transporters
The active transportation of cellular wastes produced by the photoreceptor

cell’s outer segment shedding is taken up in the RPE layer via ABC protein
transporters (ATP binding cassette transporters), which are able to carry
substances across cellular membranes, helping ‘take out the garbage’, while
also ‘flipping’ lipids and retinal materials.28 In the human eye, these retina-
specific ABC transporters are found on the rims of both rod and cone outer
segment discs, and are also known as rim proteins or RmP.29 RmP is essential in
maintaining the retinoid cycle between the photoreceptor rods and cones and
the RPE layer - there must be a successful completion of the retinoid cycle to
maintain cell health.
The retina specific gene that encodes (controls) these ABC transporters is the
ABCA4 gene. If mutations30 occur in this gene, the ATP transporters can’t do
their job properly and discarded cellular materials can’t be efficiently
metabolized by the RPE cells, leading to: an accumulation of toxic waste; a
destabilisation of membranes in the retinal layer; cellular inflammation; the
release of apoptopic (cell toxic) proteins from the mitochondria; and increased
vulnerability of cells to damage by incoming ultraviolet light.31 This contributes
to the subsequent death of photoreceptors and ultimately, degradation of the
28 ABC transporters are found across a wide spectrum of life forms from bacteria to
humans, and are probably the largest group of protein families known to date. See
Westerfeld, C. (2010). "ABC transporters in ophthalmic disease." Methods Mol Biol 637:
221-230, page 221
221-230, page 226
30 According to Westerfeld the estimated carrier frequency for this mutation is at about 2
to 3% in the general population. See Westerfeld, C. (2010). "ABC transporters in
ophthalmic disease." Methods Mol Biol 637: 221-230, page 225
31 Levin, L. A., F. H. Adler, P. L. Kaufman and A. Alm (2011). Adler's physiology of the eye
[electronic resource], Edingburg : Saunders/Elsevier, c2011. 11th ed. / editors, Leonard
A. Levin ... [et al.] ; managing editors, Paul L. Kaufman, Albert Alm, page 403
20
RPE layer itself.32 Mutations in non-retinal ABC transporter proteins are known
to be linked with many human inherited disorders33 that are characterised by
defects in the ability to transport cellular substances. Mutations in the ABCA4
gene are also linked with a number of vision disorders: Stargardt’s Disease;
Fundus Flavimaculatus; autosomal recessive cone-rod dystrophy type 3;
Retinitis Pigmentosa type 19; and Age Related Macular Degeneration.34
The accumulated waste caused by this breakdown is known as lipofuscin, and

while lipofuscin can be found in other areas of the ageing human body, it is
differentiated in the RPE layer due to its main composition being that of poorly
digested photoreceptor outer segments,35 and insufficiently metabolised
vitamin A. A major component of lipofuscin is a chemical named A2E (N-
retinylidene-N-retinyl-ethamine), which may prevent the RPE layer from
carrying out essential functions, ultimately leading to photoreceptor cell
death.36 The area of the macula may be particularly affected by the presence
of the A2E toxin because this area has the highest ratio of photoreceptor cells,
(and hence defective rim proteins), to RPE layer cells.37 In a healthy eye, absent
32 Mutations on the ABCA4 gene are known to be linked with some cone-rod dystrophies,
including Retinitis Pigmentosa, and Age Related Macular Degeneration, as well as
Stargardt Disease. See Levin, L. A., F. H. Adler, P. L. Kaufman and A. Alm (2011). Adler's
physiology of the eye [electronic resource], Edingburg : Saunders/Elsevier, c2011. 11th
ed. / editors, Leonard A. Levin ... [et al.] ; managing editors, Paul L. Kaufman, Albert Alm,
page 403
221-230, page 222
34 Ibid., 221-230
35 Kennedy, C. J., P. E. Rakoczy, and I. J. Constable. "Lipofuscin of the Retinal Pigment

Epithelium: A Review." Eye 1885 9;6:763-71.
221-230

therapeutic opportunities." Nat Rev Neurosci 7(11): 860-872. See also Westerfeld, C.
(2010). "ABC transporters in ophthalmic disease." Methods Mol Biol 637: 221-230
21
of genetic mutations, these same (healthy) rim proteins would be protecting
the RPE cells from toxic photo oxidative by-products.38
In the initial stages of Stargardt’s Disease, there may be only slight changes to
the foveola, followed by the appearance of yellow flecks in the RPE layer of the
macula region. Later, changes can be seen extending into the mid periphery of
the retina.39 As the disease advances, more RPE cells become engorged with
lipofuscin and many patients exhibit a ‘dark choroid’ as a result of this
blockage.40 Yellow-white flecks are also characteristic of Fundus
Flavimaculatus, though they are scattered further into the periphery, giving the
familiar ‘beaten copper‘ appearance visible during an eye examination. As
discussed above, the presence of lipofuscin, and its main component A2E, is
high in Stargardt’s Disease and Fundus Flavimaculatus. The free radicals that
A2E generates are triggered by both light and oxygen.41 Light, in particular, is
implicated in the processes that cause Stargardt’s Disease and Fundus
Flavimaculatus. Mice bred to manifest the ABCA4 gene mutation showed no
symptoms of the diseases when raised in complete darkness.42 The metabolic
221-230.
39 See images of damage to the RPE and macula due to Fundus Flavimaculatus in Querques,
G., Levezial etal (get full field from library). 2006. "Analysis of retinal flecks in the analysis
of fundus flavimaculatus using optical coherence tomography." British Journal of
Ophthalmology 90, and Querques, G., R. Prato, C. Iaculli, M. Voigt, N. Delle Noci, G.
Coscas, G. Soubrane, and E. H. Souied. 2008. "- Correlation of visual function impairment
and OCT findings in patients with Stargardt disease and fundus flavimaculatus." - 18 (-
2):- 247. (Note that the researchers separate these as two separate diseases.)
221-230., page 224. See also Fish, G., R. Grey, K. S. Sehmi and A. C. Bird (1981). "The dark
choroid in posterior retinal dystrophies." British Journal of Ophthalmology 65(5): 359.

therapeutic opportunities." Nat Rev Neurosci 7(11): 860-872
42 Ibid., 863
22
waste build up in Stargardt’s Disease and Fundus Flavimaculatus is also evident
in Age Related Macular Degeneration (AMD).43
AMD is different to Stargardt’s Disease and Fundus Flavimaculatus. It is the

leading cause of vision loss in the elderly in high income countries with over 30
per cent of the population above the age of 70 likely to be affected,44 and is
usually caused by a combination of genetic and environmental factors. The
condition can be classified as two types – wet and dry. In the dry form of AMD,
Drusen, comprised of lipofuscin and other materials can build up between the
RPE layer and Bruch’s membrane. In the wet form of AMD, bleeding from the
choroid occurs resulting in haemorrhaging of the RPE layer.45 While there are
similarities between AMD and Stargardt’s Disease and Fundus Flavimaculatus,
these latter diseases do not present in the wet form, and while mutations in
the ABCA4 gene can be present in AMD, it is generally considered in the
literature to be driven more by environmental and ageing factors.
2.4 Fundus Flavimaculatus
Fundus Flavimaculatus was first described in 1962, by a Swiss Ophthalmologist

named Adolph Franceschetti,46 after seeing patients with strange yellow flecks
of the retina.
43 Levin, L. A., F. H. Adler, P. L. Kaufman and A. Alm (2011). Adler's physiology of the eye
[electronic resource], Edingburg: Saunders/Elsevier, c2011.11th ed. / editors, Leonard
A. Levin ... [et al.] ; managing editors, Paul L. Kaufman, Albert Al, page 403
221-230., page 226
45 Ibid., 225
46 Franceschetti, A., and J. François. 1965. "[Fundus flavimaculatus]." Archives

D'ophtalmologie Et Revue Générale D'ophtalmologie 25 (6):505-530.1. Franceschetti,
A.; Fran\l=c;\ois,J.; and Babel, J.:Les H\l=e'\r\l=e'\do-
D\l=e'\g\l=e'\n\l=e'\rescencesChorio-R\l=e'\tiniennes,Paris: Masson et Cie, 1963, vol 1,
23
The ophthalmologist, Ronald E. Carr, a contemporary of Franceschetti, also
noted this new disease, whose symptoms, while sometimes mistaken for
‘tapetoretinal degeneration’,47 could not be classified as such in clinical testing.
In a 1965 publication,48 Carr described the peripheral lesions of five patients

with the newly identified Fundus Flavimaculatus noting: the ‘irregularly shaped
atrophic lesions’ of the macula; the disappearance of the pigment epithelium;
the clearly evident choroidal vessels; and the scattered brown pigment clumps.
Multiple atrophic areas were also seen in the mid peripheral region of the
fundus. Carr described the lesions as small, discreet, and irregular in shape, with
loss of pigment, and fine clumping around and within these atrophic lesions.
Some patients displayed degenerated areas with a ‘golden sheen’, but all
patients with the newly identified disease of Fundus Flavimaculatus displayed
the common attribute of ‘…yellow-white atrophic-appearing lesions in the
posterior pole.’ 49
By 1965, Franceschetti had surmised that the condition he first identified and
named, was probably indistinguishable from Stargardt’s Disease,50 a conclusion
that was further confirmed in a 1975 publication, by a research collaborator of
pp 426-436, 441\x=req-\446. See also Fishman, G. A. (2010). "Historical evolution in

the understanding of Stargardt macular dystrophy." Ophthalmic Genet 31(4): 183-189.
47 An hereditary disorder of the retina, mainly affecting photoreceptors and retinal

pigment epithelium. See http://www.medilexicon.org/ For definition link
http://www.medilexicon.com/medicaldictionary.php?t=23338, accessed 29 May 2014
48 Carr, R. E. (1965). "FUNDUS FLAVIMACULATUS." Archives Of Ophthalmology 74: 163-

168
49 Ibid., 163-168

24
Franceschetti, Professor Jules Francois,51 and also by Noble and Carr, in a 1979
study of both Stargardt’s and Fundus Flavimaculatus patients, where it was
concluded that, ‘there is no rational or logical distinction’ between the two
diseases.52
2.5 Stargardt’s Disease
Although diseases of the retina had been documented many years earlier, it
was in 1909 that the German ophthalmologist, Dr Karl Stargardt, identified the
condition that now bears his name. Stargardt located it as a disease of genetic
origin, affecting photoreceptor cones, the retinal pigment epithelium layer and
the choroid.
With the recognition that Fundus Flavimaculatus and Stargardt’s were probably
the same disease by the 1970s, researchers were now able to begin classifying
stages, severity and outcomes of the disorder.
In 1976, the disease was classified into four groups by Gerald Fishman53 in order
to differentiate severities in the loss of photoreceptor cells, the extent and
characteristics of fundus fleck-like lesions, and to determine variations in the
degree of choroidal atrophy. Fishman called these groups, stages of
progression in Fundus Flavimaculatus, adding that ‘… these stages do not
necessarily implicate the same sequence of evolution for all patients afflicted
51 François, P., P. Turut, B. Puech and J. C. Hache (1975). "[Stargardt's disease and fundus
flavimaculatus]." Archives D'ophtalmologie Et Revue Générale D'ophtalmologie 35(11):
817-846.
52 Noble, K. G. and R. E. Carr (1979). "Stargardt's Disease and Fundus Flavimaculatus."

Archives of Ophthalmology 97(7): 1281, page 1285
53 Fishman, G. A. (1976). "Fundus flavimaculatus: A clinical classification." Archives of

Ophthalmology 94(12): 2061-2067.
25
with this disease.’54 It should be noted that while Fishman referred to the stages
of Fundus Flavimaculatus in that publication, he referred back to this as a
‘classification of Stargardt patients into four groups,’ in his 2010 publication.55
Clearly, for Fishman, they are one and the same disease, albeit with a variety of
progressions and severities.
Classifications also formed the basis for a recently published longitudinal study
of Stargardt’s Disease patients, who were grouped according to
electrophysiological results. These subjects were divided into: Group 1 - those
whose dysfunctions were confined to the macula; Group 2 - those with macular
and generalized cone dysfunction; and Group 3 - those patients with macular
dystrophy as well as generalized rod and cone system dysfunction.56 Results at
the end of a ten-year period showed that a patient’s allocation to an individual
group, as identified at the beginning of the trial period, could change over time.
Significantly however, all those who were initially placed in the third group (that
is those with rod involvement), showed clinically significant
electrophysiological deterioration, while only a much smaller number of
patients from the other two groups showed clinically significant progression of
the disease. Perhaps this underscores the findings of Fishman and others that
Stargardt’s Disease varies in evolution and severity and outcomes are often
hard to predict.
54 Fishman, G. A. (1976). "Fundus flavimaculatus. A clinical classification." Archives Of

Ophthalmology 94(12): 2061-2067, page 2062

56 Fujinami, K., N. Lois, A. E. Davidson, D. S. Mackay, C. R. Hogg, E. M. Stone, K. Tsunoda, K.

Tsubota, C. Bunce, A. G. Robson, A. T. Moore, A. R. Webster, G. E. Holder and M.
Michaelides (2013). "A Longitudinal Study of Stargardt Disease: Clinical and
Electrophysiologic Assessment, Progression, and Genotype Correlations." American
Journal of Ophthalmology 155(6): 1075-1088
26
In 1981, Fish, Grey and co-workers wrote of the phenomenon of the ‘dark
choroid,’ observed during fluorescein angiography in patients with retinal
diseases such as Stargardt's Disease.57 This had also been noted by Krill, Klien
and others in previous decades, but as Fishman notes, had been largely
ignored.58 The dark choroid was discovered to be a result of blockages in the
blood supply from the choroid, due to the toxic build up of lipofuscin in the RPE
layer. Eagle, Ralph and co-workers reported this discovery after the post
mortem examination of a 24-year-old male with Fundus Flavimaculatus. Eagle
and co-workers noted the eyes of the deceased man showed '... massive
amounts of lipopigment', (granular like lipofuscin material), contributing to a
massive accumulation in the retinal pigment epithelia. Eagle et al. concluded
that this lipofuscin did indeed play a significant role in the development of
Fundus Flavimaculatus.59 In 1981, Fish et al. wrote of the phenomenon of the
‘dark choroid,’ observed during fluorescein angiography in patients with retinal
diseases such as Stargardt's Disease.60
This had also been noted by Krill, Klien and others in previous decades, but as
Fishman notes, had been largely ignored.61 The dark choroid was discovered
to be a result of blockages in the blood supply from the choroid, due to the toxic
57 Fish, G., R. Grey, K. S. Sehmi, and A. C. Bird. 1981. "The dark choroid in posterior retinal
dystrophies." British Journal of Ophthalmology 65 (5):359.
58 Fishman, G. A. 2010. "Historical evolution in the understanding of Stargardt macular

dystrophy." Ophthalmic Genet 31 (4):183-9. doi: 10.3109/13816810.2010.499887.,
page 186
59 Eagle Jr, Ralph C., Alfred C. Lucier, Vitaliano B. Bernardino Jr, and Myron Yanoff. 1980.
"Retinal Pigment Epithelial Abnormalities in Fundus Flavimaculatus: A Light and
Electron Microscopic Study." Ophthalmology 87 (12):1189-1200. doi:
http://dx.doi.org/10.1016/S0161-6420(80)35106-3.
60 Fish, G., R. Grey, K. S. Sehmi, and A. C. Bird. 1981. "The dark choroid in posterior retinal
dystrophies." British Journal of Ophthalmology 65 (5):359.
61 Fishman, G. A. 2010. "Historical evolution in the understanding of Stargardt macular

dystrophy." Ophthalmic Genet 31 (4):183-9. doi: 10.3109/13816810.2010.499887.,
page 186
27
build-up of lipofuscin in the RPE layer. Eagle, Ralph et al. noted this after the
post mortem examination of a 24-year-old male with Fundus Flavimaculatus.
They noted the eyes of the deceased man showed '... massive amounts of
lipopigment', (granular like lipofuscin material), contributing to a massive
accumulation in the retinal pigment epithelia. They concluded that this
lipofuscin did indeed play a significant role in the development of Fundus
Flavimaculatus.62
By 1995, advances in genetics research revealed the chromosome that

Stargardt’s Disease and Fundus Flavimaculatus share, as a result of mutations,
form the same gene. By the late 1990s, the link between the identified genetic
mutation and the protein responsible for this disease was shown, which led to
the development of animal models for Stargardt’s Disease, paving the way to
present understandings of the role of genetic mutations and diseases linked
with them, and as well as possible therapies. While these findings show that
Stargardt’s Disease and Fundus Flavimaculatus are different spectrums of the
same disease genotype,63 they can show different phenotypic profiles.64
Generally, Stargardt’s Disease exhibits a gradual decline in vision between the

ages of six and 20 resulting in the appearance of yellowish flakes in the RPE layer
62 Eagle Jr, Ralph C., Alfred C. Lucier, Vitaliano B. Bernardino Jr, and Myron Yanoff. 1980.
"Retinal Pigment Epithelial Abnormalities in Fundus Flavimmaculatus: A Light and
Electron Microscopic Study." Ophthalmology 87 (12):1189-1200. doi:
http://dx.doi.org/10.1016/S0161-6420(80)35106-3.
221-230, page 224
64 A 1998 study found that “Morphologic changes and retinal function deterioration are
more severe in patients with FF than in patients with SMD. The duration of the disease
has a greater effect on patients with FF than on patients with SMD.” For this and further
findings see Armstrong, J. D., D. Meyer, S. Xu, and J. L. Elfervig. 1998. "Long-term follow-
up of Stargardt's disease and fundus flavimaculatus." Ophthalmology 105 (3):448-457.
28
and extending to the mid periphery, followed by a zone of atrophied RPE cells
in the macula that give the appearance of a ‘bull’s eye’.65
Fundus Flavimaculatus also displays yellow and white flecks, which may extend
further into the periphery of the retina, but this is more often diagnosed when
the disease manifests later in life and the flecks are scattered throughout the
fundus, while still preserving relatively good visual acuity.66
What could account for differences in macular disease, despite the same genes
being implicated? It may be that different types of macular diseases manifest
because of the severity of mutations – a theory proposed by the residual activity
model put forth by Westerfeld.67 In this theory, the mutant ABCA4 gene can
cause either more, or less, activity of retina specific transporter proteins, known
as RmP, depending on the severity of the mutation (refer section 2.3.5 ABC
Transporters, for an explanation of their role in Stargardt's Disease).
If the mutation is severe, it causes less RmP activity, and therefore, a more
severe form of vision impairment such as Retinitis Pigmentosa. On the other
hand, if there is less of a mutation on the ABCA4 gene, then there is still some
RmP activity, that is, residual activity that still allows some transportation of
65 For an investigation into vision loss and macular damage in Stargardt’s Disease, see
Anastasakis, Anastasios MD, G. A. MD Fishman, Martin Lindeman, Comt, M. A. MD
Genead, and Wensheng Zhou, MD. 2011. "Infared Scanning Laser Ophthalmascope
Imaging of the Macular and its Correlation with Functional loss and Structural Changes
in patients with Stargardt Disease." Retina 31:949 - 958. See also Kim, Linda S., and
Gerald A. Fishman. 2006. "Comparison of Visual Acuity Loss in Patients with Different
Stages of Stargardt’s Disease." Ophthalmology 113 (10):1748-1751.
doi:10.1016/j.ophtha.2006.04.027, on stages of Stargardt’s progression and remaining
levels of visual acuity.
221-230. page 224
67 The Residual Activity Model, and its implications in ophthalmic disease are discussed in
221-230, page 226 -228
29
cellular waste to continue. This results in a ‘milder’ form of retinal disease such
as Stargardt’s Disease or Fundus Flavimaculatus.68
2.6 The visual system – from eye to brain
This section will briefly describe how signals are sent from the eye to the brain.
In chapter 7 Visual Perception, the brain’s role in visual perception and its
implications in the symptoms of Stargardt’s Disease will be discussed.
2.6.1 The axons of retinal ganglion cells
As described in the brief overview of the structure of the eye, nerve signals pass
back from the photo receptors through the layers of the retina, to the retinal
ganglion cells (RGCs – the output cells of the retina), which then pass this
information on to the optic disc, and along the optic nerve, to the visual areas
of the brain.
Some of the functions that the RGCs perform are relevant to the investigation
of Stargardt’s Disease on the visual field. Some of the RGCs are larger than
others and are called M Cells. They receive information specifically from rods,
outputting data about objects, motion and shadows in dim lighting, and are
general rather than specific. Smaller ganglion cells called P Cells deal with
information from cones and provide information on edges, fine detail and
colour.
68 The Residual Activity Model, and its implications in ophthalmic disease are discussed in
221-230, page 226 -228
30
All ganglion cells have off-centre and on-centre neurons, which activate
depending on whether a visual stimulus hits the centre, or the edge, of the
receptive field.69
The optic disc is easily identifiable in all photographs of the retina. It has no
photoreceptors, and because light cannot be detected here, it is known as the
blind spot (Figure 2 is a diagram showing the distribution of photoreceptor rods
and cones). The blind spot is a good demonstration of the filling-in
phenomenon that occurs in all healthy eyes; involuntary eye movements keep
the eye moving so we do not notice any absence in our vision. To some degree
this is exactly what happens with an Absolute Scotoma in central vision loss – if
the ‘blind spot’ is small enough, we will not be aware of it, and the brain will fill
in (sometimes rather creatively!) the areas that are missing. This subject will be
further explored in section 3.11 Cortical completion – the 'filling in'
phenomenon.
2.6.2 The optic nerve and the brain
The optic nerve provides evidence that the retina is in fact part of the brain.70
The optic nerves of each eye begin where the axons of the RGCs leave the optic
disc, running along pathways to a point in the brain called the optic chiasm.
Once the nerves pass the optic chiasm, they form the optic tracts, where some
signals from each eye cross over to opposite sides of the brain. This is how a
composite picture of the world is formed.
These optic tracts then progress to each Lateral Geniculate Nucleus (LGN),
where some nerve fibres terminate, while others continue on into other areas,
69 Martini, F. H. P. and J. L. N. (2009). Fundamentals of Anatomy and Physiology. USA,

Pearson Benjamin Cummings, page 583
70 Hubel, D. H. (1988). Eye, brain, and vision, New York: Scientific American Library :
Distributed by W.H. Freeman, 1988
31
on both the right and left cerebral hemispheres,71 including the optic radiations
and the primary visual cortex (V1).72
There is a continuous process of convergence and divergence as the signals

travel from the retina to the primary visual cortex, and the system is highly
organized and highly specialized. Visual space corresponds to particular regions
in the visual brain, in a ‘cortical map’ of the outside world. The LGN of each eye
has six separate layers, with alternating information from the left and right optic
tracts, while at V1, a large proportion is devoted to visual information derived
from the macula. The fovea is represented in the posterior part of the visual
cortex, whereas more peripheral regions of the retina are represented further
away from this region. V1 also radiates outward into other areas that are
involved in more complex visual perception. Visual processing also takes dorsal
and ventral pathways. The dorsal stream is thought to involve spatial
relationships and movement, while the ventral stream is thought to be for
object recognition and high image resolution. Further detail is provided in
section 7.4 Exploring the brain with visual illusion.
2.6.3 Visual fields
The visual field denotes the entire area that the eyes, directed forward can see
without movement of the head. It can refer to either what is seen by one eye
(monocular), or the area seen by both eyes (binocular). 73
The visual field can be further divided into the right and left visual hemisfields,
and then again into the superior and interior visual hemisfields. The central
71 Martini, F. H. P. and J. L. N. PhD (2009). Fundamentals of Anatomy and Physiology. USA,

Pearson Benjamin Cummings, page 585
72 See Purves, Dale, and R. Beau Lotto. 2011. Why we see what we do redux: a wholly
empirical theory of vision, Sunderland, Mass: Sinauer Associates, 2011. pages 214-219
73 Purves, Dale. 2010. Brains: how they seem to work. Upper Saddle River, N.J.: FT Press
Science, 2010
32
field of view, where all the regions overlap is known as the binocular field of
view.
Here in the binocular field of view, the image projects directly onto the macula,
where the high density of photoreceptor cones give us our finely tuned central
vision. The boundaries outside this area are our peripheral fields of view, which
are exclusively monocular.
The visual axis refers to our line of sight, derived by drawing an imaginary
straight line from an object through the lens of our eyes and on to the fovea at
the centre at the retina. The reason the object is so clear is because we position
our line of sight to hit those densely packed cones in the fovea. Visual acuity is
measured based on this most central line of sight.
Knowing how the visual field is organized is critical to our understanding of the
impact of Stargardt’s Disease. It shows where central vision loss impacts, where
a scotoma might be situated, and how large it is. It also illustrates: how the fields
are mapped onto the visual brain; the efficiency of the visual system; and has
implications in visual perception (See details in chapter 7 Visual Perception).
2.6.4 The visual field and visual axis
Visual field testing in ophthalmic practice enables the detection of vision loss in
any part of the visual field. Testing can range from simple methods like the
Amsler Grid Test, to the use of equipment such as the Goldmann Spherical
Projection Perimeter or the Humphrey Visual Field Analyser.74
74 Stein, Harold A., Raymond M. Stein, and Melvin I. Freeman. 2013. The ophthalmic
assistant: a text for allied and associated ophthalmic personnel. Edinburgh ; New York :
Elsevier Saunders, 2013, 9th ed. Chapter 17, particularly page 346-348.
33
2.7 Measuring visual acuity – a brief over view
Visual acuity, or the eye’s ability to focus and resolve images clearly, depends
on a number of factors including: the health of the retina; its visual pathways;
and the processing abilities of the brain.
While refractive errors, which cause focusing difficulties can usually be

corrected by optical devices or surgical procedures, visual disturbances are
deemed to be neural when located in either the retina, brain, or the passage
between the two.
Visual acuity measurements usually capture the spatial resolution of the

patient’s central vision, that is, the foveal vision. This requires the eyes to
remain fixated in order to establish the ability to read optotypes such as letters
or symbols at specific distances.
Distances used are commonly referred to as 20/20 vision (Imperial), 6/6 vision
(Metric) scales, or in decimal values, where 20/20 or 6/6 is equivalent to 1.0 in
order to determine vision within a set normal range.
The first part of the number (20, 6 or 3) refers to the distance between the
viewer and the chart. This is known as the numerator. The second part of the
visual acuity measurement is known as the denominator, and it measures the
distance a person with ‘normal’ range vision would be able to see the same
optotype at a variably greater range. Therefore 20/40 indicates a person can
see the letter, designed to be viewed at 40 feet away, from a distance of 20 feet
away.
If a reading is estimated to be 20/200, this indicates a person’s visual acuity can

only read the letters on the chart at 20 feet away, while a person with normal
vision could read the same letters at 200 feet away.
These kinds of tests measure the sharpness of sight at high contrast and at
specific distances, but they do not give much information about the ability to
34
view objects at lower contrasts. Also they require the patient to be able to
fixate their vision with the fovea, which people with damage to the macula may
not be able to do.
Furthermore, the definition of 20/20 or 6/6 as a ‘normal’ range, should be taken

with caution.
When the first optotypic charts were developed by Dutch ophthalmologist

Franciscus Dodders in the 1850’s, he used a functional reference standard set
below the average acuity range of healthy human vision, that could be
reproduced anywhere in the world.
Setting this range at the actual median of visual acuity would have meant that
half any given population would fall below the standard.75
2.7.1 Measuring vision loss
The LogMAR (logarithm of the minimum angle of resolution) scale measures

visual acuity loss. Positive scores indicate vision loss while negative scores
indicate better vision.
Therefore 20/20, 6/6.0 or 1.0 would equal the LogMAR value of 0.00, while a
poor visual acuity score of 20/200, 6/60 or 0.10 would equal a LogMAR score
of 1.00.
75 Colenbrander, A. (2008). "The Historical Evolution of Visual Acuity Measurement." Visual

Impairment Research 10(2/3): 57-66, page 60
35
Figure 3: An example of a LogMAR chart
Source: http://www.cehjournal.org/article/when-someone-has-low-vision/
First developed by Ian Bailey and Jan Lovie (Melbourne 1976),76 the LogMAR
test builds on logarithmic measurements previously introduced by others in the
field. The scale has only five letters per line forming an inverted triangle with
stepped logarithmic gradations from one line to another and uniform spacing.
As a result, it enables an accurate measurement and wider range of values to
be detected for low vision assessment.
This scale was adapted and modified with the Sloan chart to form the Early
Treatment of Diabetic Retinopathy study (ETDRS), by the National Eye Institute
(USA), which has become a de facto International Standard for visual acuity
testing and low vision evaluation.77
76 Bailey, Ian L., and Jan E. Lovie-Kitchin. 2013. "Visual acuity testing. From the laboratory
to the clinic." Vision Research 90:2-9

Impairment Research 10(2/3): 57-66
36
2.7.2 Classifications of vision
If the 19th Century saw the inception and development of standardised charts,
the 20th Century witnessed the need to move beyond these charts, and the
simple dichotomies of ‘sighted’ and ‘blinded’ that such charts encouraged, a
process that is, in some ways, still in evolution today.78
2.7.3 Legal blindness
The term ‘legal blindness’ was officially defined by the American Medical
Association in 1934. This classification points to the fact that, while there was a
need to establish definitions for the purposes of welfare and government
benefits, there were also people who fell somewhere between the range of
sighted and blind. An unfortunate outcome of attributing the term ’blind’ to
those who clearly weren’t prompted the observation that ‘more people are
blinded by definition than by any other cause’.79
2.7.4 Spivey and Colenbrander
In 1976, in a letter to the editor of Archives of Ophthalmology, ophthalmologists

Spivey and Colenbrander lamented on the continued use of the terms ‘legally
seeing’ (a range better than 20/200 in the visual acuity score) and ‘legally blind’,
(a range of 20/200 and worse) citing the need to include a hitherto
unrecognised group of people with low vision, who are neither blind because
they still have usable vision, but do not fall into the range of those with normal
78 Best, Harry. 1939. "Blindness: Definition and Statistics." American Sociological Review
4 (4):488-492.
79 This quote is attributed to Lloyd Greenwood in a 1949 publication. Greenwood was a

blind veteran and first executive director of the Blinded Veterans Association of
America. See Goodrich, G. L., A. Arditi, G. Rubin, J. Keeffe and G. E. Legge (2008). "The
Low Vision Timeline: An Interactive History." Visual Impairment Research 10(2/3): 67-
75, for an interactive timeline of low vision.
37
vision identified by visual acuity tests, as they need assistance to optimise the
vision they do have.
The authors were commenting on the upcoming World Health Organization

(WHO) (ninth) revision80 of the International Classification of Diseases, which
was to include separate categories for low vision and blindness.
The inclusion of classifications for impairments, disabilities and handicaps, also

acknowledged the need for uniform guidelines of terms and definitions to be
used by the growing field of disciplines related to vision care.
The new low vision category would recognize visual potential, inserting the
category at 20/80 to 20/400, thus moving near normal vision up to 20/60 or
better, and blindness worse than 20/400 and onwards, or visual field loss of 10
degrees or less.81 Most notably, the authors called for the term ‘legal blindness’
to be replaced by ‘severe visual impairment’ in terminology used for eligibility
guidelines.82
Spivey and Colenbrander further pointed out that the terms ‘visual
impairment’, ‘visual disability’ and ‘visual handicap’ were not synonymous.
Disability should refer only to an inability to do something such as read,
impairment should apply in this case to the eyes of the individual only, and not
the person, while handicaps should only refer to the disadvantages a person
might experience. The authors asserted that medical services address the
impairment, while rehabilitation services address the handicaps resulting from
80 WHO 2004. ICD-9-CM International classification of diseases, ninth revision

Washington, DC : U.S. Dept. of Health and Human Services, Centers for Disease Control
and Prevention, Center for Medicare and Medicaid Services, 2004. 6th ed. Computer
File.
81 These measurements were based on the WHO recommendations set in 1972
82 Spivey, B. E. and A. Colenbrander (1976). "Classification of visual performance." Archives

of Ophthalmology 94(7): 1227-1227.
38
the impairment, and that both services should be equally important in low
vision care.
2.7.5 WHO ICD-9
th
Throughout the latter half of the 20 Century groups such as the World Health
Organization (WHO), were developing guidelines and terms of reference in
response to the need to adequately classify impairment, disability and handicap
to meet the needs of service providers, government welfare agencies and
insurance companies addressing compensation claims.
WHO drew up the International Classification of Diseases – Ninth Revision (ICD-

9) in 1977, where the term ‘low vision’ was introduced with its position in the
scale of visual acuity. Furthermore, ‘severe vision loss’ would replace the term
‘legal blindness’ and ‘profound vision loss’ would replace the term ‘blindness’.
The ICD-9 is the document referred to above in the 1976 letter to the editor by
Spivey and Colenbrander. A companion document, The International
Classification of Impairments, Disabilities and Handicaps (ICIDH), was published
in 1980. In 2001, the International Classification of Functioning, Disability and
Health (ICF) (WHO 2001) superseded the ICIDH of 1980. It refers to the health
condition, impairment disability and participation replaces handicap.
2.7.6 ICO
The International Council of Ophthalmology (ICO) noted in 2002,83 that a lack

of clarity around the term ‘blindness’ had contributed to significant confusion
about its definition and prevalence. When I was diagnosed with Stargardt’s
Disease in 1989, the doctor said I was going to ‘go blind’. That was 12 years
after the WHO document was published. I didn’t hear the term ‘low vision’ until
83 These definitions are taken from the Visual Standards Aspects and ranges of Vision
Loss International Council of ophthalmology 2002 (Sydney)
http://www.icoph.org/dynamic/attachments/resources/ico_resolution_on_visual_ter
minology.pdf
39
I started this research project in 2012, which was 35 years after the
recommendation to use the term.
As a result of that 2002 meeting, the ICO decided that it would also include the
term ‘low vision’ as another category that needed both prevention and
remediation. A distinction had to be drawn between blindness and low vision,
as follows –
• the term ‘blindness’ should be used only for total vision loss and for
conditions where individuals have to rely predominantly on vision
substitution skills.
• The term ‘low vision’ should be used for lesser degrees of vision loss,
where individuals can be helped significantly by vision enhancement
aids and devices. This definition reflects the WHO functional definition
of low vision with is best corrected vision impairment <6/18 to
perception of light with blindness being no perception of light. *
Furthermore, the classification of ‘visual impairment’ was to be used in regard

to visual function at the organ level, and could be measured quantitatively,
while functional vision should refer to a person's ability to use his/her vision in
activities of daily living, which could be only described qualitatively.84
‘Vision loss’ refers to both total or partial vision loss (i.e. blindness and low
vision, and should be used as a general term. The term ‘vision loss’ can then be
further broken down into subsets, or ranges, based on the WHO (ICD-9, ICD-10
and functional definition) recommendations of levels of visual acuity and
adjacent terms.
84 See in particular the discussion of the ICO Resolution by August Colenbrander, on page
2 of the above report.
*World Health Organization. Management of low vision in children. WHO/PBL/93.27.
40
These ranges of vision loss would include mild, moderate, severe and profound,
and near total levels of vision loss. Based on visual acuity measurements, visual
impairment – from mild to total (with no light perception), could also be
established.
2.7.7 Blurring the lines
The ICO report stated that the term blindness should be applied when an
individual primarily uses vision substitution (such as touch or sound) in activities
of daily life, while those who primarily use vision aids (such as magnifiers or
technologies like computers) in daily life should be defined as having low vision.
But sometimes vision aids and vision substitutions can be used by the same
individual, at different times. Are they then termed as ‘blind’ or, instead, having
‘low vision’?
2.7.8 Functional vision and visual function
How much progress was made by the turn of the millennium? August
Colenbrander published article in Acta Ophthalmologica in 2010,85 on the need
to clarify or eliminate terms, definitions, and oversimplifications in low vision
and blindness health care practice.
Responding to a growing awareness of the need to distinguish functional vision

(identified as a ‘megatrend’ in low vision care by the journal’s editor),86 as
distinct from visual function, Dr Colenbrander reiterated many of the concerns
he and Spivey raised 34 years earlier, demonstrating that confusion around low
vision and blindness still persisted.
85 Colenbrander, August. 2010. "Assessment of functional vision and its rehabilitation."

Acta Ophthalmologica 88 (2):163-173. doi: 10.1111/j.1755-3768.2009.01670.x.
86 Kivelä, Tero. 2010. "Blind, by definition – or should we prefer functional vision?" Acta
Ophthalmologica 88 (2):161-162. doi: 10.1111/j.1755-3768.2010.01885.x, page 162
41
Firstly, visual function deals with the function of the organ - its tissue and
structure quantitatively measured with visual acuity, visual field and contrast
sensitivity tests which reveal something about how the organ functions under
the impact of the disease.
Visual functions ‘do not fully predict how the organ will function’,87 and they
tell us nothing about the individual under examination. They should not be
confused with how the person functions - this is the aspect of functional vision
that deals with the ability to perform tasks such as reading, mobility, face
recognition and other aspects of daily living. Beyond this, eye health care
professionals should examine wider social consequences and contexts – the
ability to participate, to fully integrate, and achieve improved quality of life -
surely a unifying goal for all who assist individuals in dealing with the impact of
low vision or blindness.
Too often, functional vision and visual function are confused, leading to a
mismatch of services, incorrect evaluations of services delivered, and
unsatisfactory outcomes in patient care - a situation reflected in a language and
terminology that is not sufficiently aspect specific.88 Both functional vision and
quality of life assessments are qualitatively and qualitatively assessed and are
not to be confused with the pure quantitative analysis of visual functions. These
terms are not interchangeable. It is surprising, and somewhat disappointing
that in 2010, these were concerns still being raised, long after the WHO and ICO
recommendations and even Dr Marc Amsler’s journal article on the need to pay
attention to qualitative aspects of vision ability, published in 1953 (refer section
6.4.4 Qualitative assessments)

Impairment Research 10(2/3): 57-66.
88 Colenbrander, August. 2003. "Aspects of vision loss - visual functions and functional
vision." Visual Impairment Research 5 (3):115-136. doi: 10.1080/13882350390489197.,
page 164
42
While vision loss can be classified further from moderate to that of no light
perception at all, this does not accommodate for factors that do not depend on
visual acuity, including the variability of an individual’s ability to manage
aspects of either the degree of their vision loss, or absence of it.
Having established that visual acuity tests are only guideposts along a
continuum ranging from normal vision to total absence of vision, section 2.7.9
provides an example of low vision levels and attached measurements of visual
acuity drawn up by WHO and IOC.
2.7.9 Acuity less than 20/400
If a person has a visual acuity less than 20/400, (falling somewhere in the range
of severe vision loss), low vision charts can be used. The measurements are
classified as follows:
Counting Fingers (CF): the ability to count fingers at a given distance
Hand Motion (HM): the ability to distinguish a hand if it is moving or not in front
of the patients’ face
Light Perception (LP): the ability to perceive light
No Light Perception (NLP): the inability to perceive light
Where does Stargardt’s Disease fit within these ranges of visual acuity and
performance measurements? In the following chapter a variety of visual acuity
measurements for Stargardt’s will be provided. Most often, visual acuity
outcomes will fall around the level of 20/200; a range sitting between the lower
levels of moderate vision loss, and the upper levels of severe vision loss and an
acuity level also defined as ‘legally blind’.
43
According to Colenbrander, fundamental shifts, in both our language and our
understanding of vision loss, are required within the vison care paradigm89:
• from visual function to functional vision;

• from quantitative vision assessment to qualitative vision assessment;
• from simple focus on the organ to focus on the patient and quality of
life; and
• from a language that denies the importance of residual vision, to one
that acknowledges the importance of any remaining sight that can assist
in activities of daily living.
2.8 Assessing quality of life and the impact of vision loss
Vision loss can have an enormous impact on quality of life, with economic,
psychological, social and economic costs to the individual and those around
them.90 Its effects can be particularly amplified by the level of services available
in regions or countries and a person’s age, gender and socio economic
background. As Colenbrander points out, the unifying end goal of health care
page 164
90 A study exploring vision loss related quality of life and mental stress revealed that the
subjective consequences of vision loss were more important than the objective
measures of vision loss on mental health. See Gall, Carolin, Doreen Brösel, and Bernhard
A. Sabel. 2013. "Remaining visual field and preserved subjective visual functioning
prevent mental distress in patients with visual field defects." Frontiers in Human
Neuroscience 7:1. See also Lamoureux, Ecosse L., Jennifer B. Hassell, and Jill E. Keeffe.
2004. "The determinants of participation in activities of daily living in people with
impaired vision." American Journal of Ophthalmology 137 (2):265-270. doi:
http://dx.doi.org/10.1016/j.ajo.2003.08.003. This study found the greatest impacts in
low vision subjects were felt particularly in reading, outdoor mobility, participating in
leisure activities, shopping and the emotional reaction to vision loss.
44
for those with low vision is an improved quality of life, despite the
circumstances in which individuals live.91
Added to this is the ability to function well in daily life. This is known as Activities
of Daily Living (ADL), of which there are several tools to assess these including
the Melbourne Low Vision ADL Index.92 The index measured the independence,
speed, and accuracy of performance of those with varying causes of vision loss,
rating them on a score level. While there is a strong relationship between levels
of visual acuity and the ability to perform tasks,93 this may not depend on the
level of visual acuity but rather on an individuals’ personal coping skills, abilities,
support levels, psychological makeup and so on.
A list of activities of daily living include items such as: reading text from either
printed or online material; reading bills and accounts; reading medicine labels;
reading labels on packaging; recognising faces; using a telephone or computer
equipment; writing cheques; signing documents; identifying money; and
pouring drinks. In studies conducted, although these were mainly done with
older adults who had lost their vision due to AMD, there was pronounced
increasing depression and anxiety, a difficulty in being able to successfully
complete activities of daily living without having difficulty and stress.94 As in the
page 165
92 Haymes, S. A., A. W. Johnston, and A. D. Heyes. 2001. "The development of the

Melbourne low-vision ADL index: a measure of vision disability." Investigative
Ophthalmology & Visual Science 42 (6):1215-1225.
93 See for example, Haymes, S. A., A. W. Johnston and A. D. Heyes (2002). "Relationship
between vision impairment and ability to perform activities of daily living." Ophthalmic
& Physiological Optics 22(2): 79-91. See also Berger, Sue. 2012. "Is my world getting
smaller? The challenges of living with vision loss." Journal of Visual Impairment &
Blindness (1):5, a study focusing on low vision and the ability to participate in leisure
activities, particularly for older adults.
94 A study focusing on older adults with low vision found that they had a higher proportion
of depression and anxiety than other older adults without low vision, or even older
adults whi suffered other chronic conditions. See Kempen, Gertrudis I. J. M., Judith
45
title of the article by Bellemane et al. (2012)95 the world of those with low vision
does get smaller, given difficulties in mobility, access to printed material,
managing activities around the home or finding work. However, when those
with vision loss sought support from low vision agencies, there was the general
consensus amongst the applicants that a good amount of support was available
to them.96 The activities of daily living that are mentioned above are also
followed up in this research project, as I explore, through art, some of the ways
the world looks from the point of view of doing some of the simplest activities
of life such as taking public transport, preparing food, talking with friends and
reading.
2.9 Chapter Summary
This chapter began with a brief review of the physiology of the eye, focusing on
the retina, its photoreceptor cells, the retinal ganglion cells and the RPE layer,
in order to gain a better understanding as to how Fundus Flavimaculatus
manifests at a cellular level. This was followed by a brief description of the
visual system from the eye to the brain which will be considered further when
the interplay between visual symptoms and perception in central vision loss is
discussed in chapter 7 Visual Perception.
Ballemans, Adelita V. Ranchor, Ger H. M. B. van Rens, and G. A. Rixt Zijlstra. 2012. "The
impact of low vision on activities of daily living, symptoms of depression, feelings of
anxiety and social support in community-living older adults seeking vision rehabilitation
services." Quality Of Life Research: An International Journal Of Quality Of Life Aspects
Of Treatment, Care And Rehabilitation 21 (8):1405-1411. doi: 10.1007/s11136-011-
0061-y.
95 Berger, Sue. 2012. "Is my world getting smaller? The challenges of living with vision loss."
Journal of Visual Impairment & Blindness (1):5. This article examined the challenges of
participating in leisure activities outside the home for older adults with vision loss.
96 For further information in the impacts of low vision see

http://www.labome.org/grant/r01/ey/vision/disabilities/vision-disabilities-in-low-
vision-7266910.html
46
The discovery of Fundus Flavimaculatus was then examined from an historical
perspective, tracing its identification as a distinct disease before its ultimate
recognition as a type of Stargardt’s Disease. As this disease usually results in
severe or profound low vision, it is necessary to understand how it affects levels
of visual acuity and where it might sit on the continuum from ‘normal vision’ to
‘total blindness’. As a result, a brief discussion on measurements and
assessment of low vision and blindness was undertaken, in which
terminologies, the difficulties in establishing such parameters, and the
distinction between functional vision and visual function were examined. This
was followed by a discussion on the activities of daily living and how Stargardt’s
Disease can impact these.
While this chapter located the disease on a physiological level and within
medical contexts, the following chapter examines the entoptic symptoms of
Stargardt’s Disease, and how this is presented in medical texts, websites, the
media, and through personal accounts.
47
48
3 Symptoms in the Visual Field
3.1 Introduction
This researcher has tried to locate Stargardt's Disease within physiological

parameters, historical contexts, current medical understandings and legislative
definitions. All these discussions so far have been an exploration of the void of
central vision loss from the outside looking in, but this is only a part of the story.
This chapter takes another perspective, examining the entoptic symptoms of

Stargardt’s Disease, for it is here in the visual field, from the inside looking out,
that the symptoms of the disease are felt and expressed. It is these visual
symptoms that may bring the patient to the doctor, and they are central to the
story of Stargardt’s Disease.
For these reasons the visual symptoms of Stargardt’s Disease will be examined
more closely, beginning with an outline of the visual symptoms usually
attributed to this type of central vision loss, and a review of how these
symptoms are represented in medical texts, journals, websites and popular
media. These findings will be then juxtaposed with the symptoms described by
people with low vision, both in written texts or visual forms.
In this section, the following artists are included:
• artists who have low vision or similar retinal diseases;

• artists who have depicted central vision loss, but do not have the
disease; and
• artists of the past who have had similar retinal diseases.
49
This is followed by a discussion of: scotomas; metamorphosia; the phenomena
of cortical completion; and Charles Bonnet Syndrome, explaining some of the
common attributes of central vision loss.
The growing trend in low vision simulation, developed primarily as an educative

tool for eye care professionals and their patients, as an attempt to ‘see for
ourselves’ what the disease looks like, is also appraised, with a discussion on
the ‘black spot’ type of representation.
Because there are so few personal accounts in the literature explored for this
research project, it becomes apparent that the subjective voice in discourses of
low vision and blindness has been both contemporarily and historically absent.
This may have also contributed to the great disparity between medical and
metaphoric notions of blindness, evident in the literature and art of the past.
Because these factors also contribute to a misunderstanding of the nature of
low vision and blindness, I have included a discussion of them in these pages.
Therefore, observations in this chapter move from the visual symptoms of

Stargardt’s Disease, as described by those who do not have the disease, to
visual symptoms described by those with the disease. This shifts our
perspective to the subjective experience of central vision loss.
The aim of this section is to locate the gaps between what we understand the
symptoms of central vision loss to be, and what they actually are for people
living with the condition. My personal perspective of the visual symptoms of
Stargardt’s Disease is described in section 3.14 A personal view of vision loss.
3.2 Medical texts and journals
So far, how the disease impacts on the eye at a cellular level has been
examined, but what is known about how this affects the visual field itself? The
following section examines what is known about the impact of the disease on
the visual field from the point of view of medical texts, journals and websites
that deal with low vision research and patient care. I have included both textual
50
and visual accounts, since both contribute to our knowledge of the symptoms
of Stargardt’s Disease.
While websites were more forthcoming with information regarding the impact
of Stargardt’s Disease and central vision loss, textual descriptions of symptoms
in medical texts and journals were notably scant and general in nature, and
visual depictions simulating symptoms of the disease were virtually absent.
Several reasons could be given for this. Firstly, in my review of the literature,
the focus of medical texts and journals was most often towards medical
instruction or research on the biology of eye diseases, not on the symptoms.
Secondly, because there are always differences in progression, rate and
severity between patients (as discussed in section 2.5 Stargardt’s Disease), and
even within individual cases over a lifetime of living with the disease,
descriptions of visual symptoms can only be general in nature. Thirdly, in regard
to visual depictions of the symptoms, the ability to simulate visual field defects
easily has only come about in recent years with computer software programs
like Adobe Photoshop and Adobe After Effects, two programs that make it
relatively easy to manipulate images in a simulation of visual field defects. Until
then, options might have only been to paint over light based photographs, or
to commission artist’s impressions. And lastly, the voice of the visually impaired
has rarely been heard in eye health medical discourse, where visual symptoms
were not always taken into account, at least at a diagnostic level (although the
Amsler Grid Test is an exception that will be examined in section 6.4 Amsler and
the grid.
But despite all these factors, there are several recognised features of the
symptoms of Stargardt’s Disease on the visual field that are most often cited in
the medical literature. These are most commonly noted as bilateral central or
near central vision loss, with a scotoma that can be either positive or negative
(refer section 3.8 Scotoma). Other symptoms include blurred vision, light
sensitivity (photophobia) and poor dark adaptation. Wavy lines or distorted
lines (metamorphosia), impaired colour vision, lower contrast sensitivity, and a
subsequent drop in visual acuity ranging from 20/50 to 20/200 or worse are
51
also indicated, and there is (usually) no change in the peripheral field or loss of
sight beyond detailed vision.
Although most of the ophthalmic text books examined mentioned Stargardt’s

Disease only in passing, (usually in the section on retinal disorders or the
macula), one text, Retinal Degenerations: Biology, Diagnostics and
Therapeutics97 prefaced its edition with extended personal accounts by two
people with Macular Degeneration. This text acknowledged the highly variable
onset age, (usually juvenile to early adult) and the clinical outcomes for those
with the disease, while also describing gradual to rapid central vision loss and
progressive bilateral atrophy of the RPE layer and photoreceptor cells. The text
also noted three major phenotypes of Stargardt’s Disease based on Fishman’s
study:98 one group with localised flecks and no dark choroid; the second with
more diffuse atrophy and dark choroid; and the third with extensive atrophic
appearing changes including to the RPE layer with both photoreceptor rod and
cone damage. It also cited Fundus Flavimaculatus, acknowledging its historical
distinction as a separate disorder, with later onset and slower progression, but
no further symptoms of visual disturbance were noted.
Journals were similarly scant with descriptions of the visual symptoms of

Stargardt’s Disease, focusing more often on genotype/phenotype correlations
of Stargardt's Disease, the role of ABCA4 mutations, and other recent medical
discoveries, all of which were more detailed than ophthalmic textbooks. When
97 Tombran-Tink, Joyce, and Colin J. Barnstable. 2007. Retinal degenerations [electronic

resource]: biology, diagnostics, and therapeutics Ophthalmology research: Totowa, N.J.:
Humana Press, 2007.
98 The reference is on page 106 of the Tombran – Tink text cited above. It refers to Fishman,
G. A. (1976). "Fundus flavimaculatus. A clinical classification." Archives of
Ophthalmology 94(12): 2061-2067, see also a discussion of Fishman’s classifications in
the section titled Stargardt’s Disease. Tombran-Tink also say that,
“..Electroretinographic (ERG) findings vary and are not usually considered diagnostic for
the disease, a finding quite different to the value of ERG findings in Fujumami and co-
worker’s longitudinal study of Stargardt patients – see the section Stargardt’s Disease in
the previous chapter
52
describing Stargardt’s symptoms they also listed: central vision loss; blurriness;
diminished visual acuity; and difficulties in reading, driving and face
recognition.
The online resource EyeWiki99 has been included here as a component of the
investigation of journals. It has some interesting notes about the symptoms of
Stargardt’s. While it lists the usual symptoms of the disease, such as: bilateral
central visual loss; photophobia; colour vision abnormalities; central scotomas;
slow dark adaptation; and visual acuity ranging from 20/20 to 20/400, it also
notes those who are diagnosed earlier in life usually experience a more severe
form of vision loss. As colour vision in Stargardt’s patients is typically
compromised, it is possible to detect a mild red-green dyschromatopsia (colour
vision disorder). When these patients are submitted to further testing, a short
wavelength deviation can be detected.100 It should be noted that the EyeWiki
page cites Fundus Flavimaculatus as a distinct, though genetically linked
condition, as a subset of Stargardt Disease, but with important differences -
patients with Fundus Flavimaculatus often have a later disease onset and
slower visual deterioration, making this a milder condition. EyeWiki states:
“Surprisingly, comparing fundus photographs of both conditions, one

might get the opposite impression because in fundus flavimaculatus there
is more widespread retinal involvement. Flecks are more diffusively
scattered throughout the posterior pole and extend out to the mid-
periphery, but the macula is less involved, allowing better visual
performance.”
99 EyeWiki reference: http://eyewiki.aao.org/Stargardt_disease/Fundus_flavimaculatus

and for further information on the EyWiki initiative see Feldman, B. (2010). "The
EyeWiki Initiative." The Virtual Mentor: VM 12(12): 922-924.
100 Refer section 4.8.10 on Colour, and also the references on cortical completion in the text
Pessoa, Luiz and Peter De Weerd. 2003. Filling-in.: from perceptual completion to
cortical reorganization: Oxford; New York: Oxford University Press, 2003
53
3.3 Websites that portray low vision
The following section is an overview of how the visual symptoms of Stargardt’s

Disease are described in words and/or visually portrayed in some of the
principal websites that deal with low vision and blindness research or eye
health care, both in Australia and internationally. It should be noted these
images are often changed, updated or even removed over time, so are only
current at the time of review (March 2014). Sometimes websites didn’t
mention Stargardt’s, but rather, focused on Macular Degeneration (MD) or Age
Related Macular Degeneration (AMD) instead; these have only been included
if necessary for the purposes of the discussion. Sometimes a brief review of the
website is given if it was found to be more informative than others. The
websites have been categorised as 'Australian' and 'International'. Curiously,
there seemed to be more visual portrayals by Australian low vision websites,
but there was one notable attempt by an international agency to make a small
film of different retinal diseases and how they might appear from the point of
view of the patient.
3.3.1 Australian websites
3.3.1.1 Vision Australia
http://www.visionaustralia.org/eye-health/eye-conditions/stargardt's-disease
accessed 9 March 2014
54
Illustration 1: Vision Australia simulation of central vision loss
Vision Australia cites symptoms of Stargardt’s Disease as including: blurred

vision; a deterioration of central vision with a central blind spot; a diminishing
ability to perceive colours; and a difficulty in adapting from bright sunlight to a
dimmer room. They had a simulation of two Australian Rainbow Lorikeets
sitting on a branch, with a black background on a computer monitor. The
simulation showed the two birds as very blurred, but it was difficult to
determine if the image included a central black area with it (illustrated above).
Their information page on AMD showed a simulation of central vision loss, of
an approaching bus, (below). While it referred to AMD, it seemed a little closer
to the effects experienced with Stargardt’s Disease, by this researcher, than did
the image of the two birds.
55
Illustration 2: Vision Australia simulation of AMD
3.3.1.2 Macular Disease Foundation Australia
http://www.mdfoundation.com.au/default.aspx
The Macular Disease Foundation Australia website gives general information on

Macular Degeneration, but does not specifically identify Stargardt’s Disease on
its website. It has an information video on Macular Degeneration which also has
simulations of the effect on the visual field showing wavy lines or a black spot
at the centre of the video image. Its various publications can also be viewed
online; the publication on Macular Degeneration contains images (see below)
of symptoms of central vision loss caused by Macular Degeneration, including
simulations of central vision loss, loss of contrast sensitivity, metamorphosia,
and visual acuity loss. Their publication titled, Macular Degeneration:
Australia’s Leading Cause of Blindness, also showed a simulation of what this
would look like (see below). Its discussion of the visual symptoms of Macular
Degeneration includes a difficulty in reading, driving or using fine vision, the
distortion of straight lines so that they appear wavy or bent, a difficulty in
distinguishing faces, and dark patches or empty spaces at the centre of vision.
56
The website seemed particularly focused on MD and the ageing
demographic.101
Illustration 3: Macular Disease Foundation Australia simulation of central vision loss
Illustration 4: Macular Disease Foundation Australia simulation of Macular Dystrophy
101 Their publication titled “Low Vision” should be mentioned, as it is a well put together
resource, with very helpful advice for those diagnosed with vision loss, so I have
included the link here:
http://www.mdfoundation.com.au/resources/1/MD_LowVision_2013_Web.pdf
57
3.3.1.3 Retina Australia
http://www.retinaaustralia.com.au/index.htm
Illustration 5: Retina Australia simulation of central vision loss
Retina Australia lists Fundus Flavimaculatus and Stargardt’s Disease as separate

diseases, with differences in age of onset and severity, although also noting
their similarities. Its description of symptoms of FFM include deteriorating
vision to 20/200, although it usually remains between 20/50 and 20/80, and an
age of onset at between teen and early adult years, with a gradual spread of
cellular damage.
The website also notes that Stargardt’s Disease is the most common form of
inherited macular dystrophy under the age of 20, with symptoms including
decreased central vision to 6/60, (and that by age of 50, half of those will be
diagnosed as legally blind), variations in rapidity of progress of damage, and
some impaired colour vision at later stages. The website stated that the disease
did not usually affect the peripheral field, but that patients may have difficulty
adjusting to light. The website gave further examples of the symptoms of vision
loss, but it was cited as examples of RP, which were assumed to be Retinitis
Pigmentosa. Of the three images provided, the image of the cat with the black
spot at the centre seemed to be most like the typical depiction of central vision
loss, and this image has been included (above).
58
3.3.1.4 Stargardt’s Australia
http://www.stargardts-au.org/main/symptoms.htm
This website is specifically targeted for those with Stargardt’s Disease. It lists
the symptoms of Stargardt’s Disease as initially mild, but worsening over time
with a variable progression. It adds that after visual acuity levels drop to below
20/40, deterioration can be rapid until it reaches 20/200. Other symptoms
include blurred vision, which is not correctable with glasses or contact lenses,
and a difficulty in adapting from bright sunlight to a dimmer room. At later
stages of progression, symptoms usually include a progressive deterioration of
central vision with missing areas of central vision, a central blind spot, and a
diminishing ability to perceive colours.
The website had a number of images simulating the effects of the disease with
distorted Amsler grids showing wavy lines or absent lines and included a black
and white image with the central field erased (below).
Illustration 6: Stargardt's Australia simulation of Stargardt's Disease
59
3.3.2 International websites
3.3.2.1 Foundation Fighting Blindness
https://www.blindness.org
The Foundation Fighting Blindness has resources and information regarding

developments in eye research that focuses on vision loss caused by different
eye conditions. The symptoms of Stargardt’s Disease as described by the
Foundation include decreased central vision as a hallmark of Stargardt’s
Disease, a decrease in colour perception, a decrease in visual acuity that
proceeds slowly at first to a level of around 20/40, and then accelerates until it
reaches 20/200, tapering off to a usual a range between 20/200 and 20/400.102
Although there were no images of simulated vision loss as a result of Stargardt’s
Disease provided, images of how macular degeneration might appear from the
perspective of the patient were listed on the page describing macular
degeneration and are shown below.
Illustration 7: Foundation Fighting Blindness simulation of Macular Degeneration
102 Foundation Fighting Blindness page on Stargardt’s Disease:

https://www.blindness.org/index.php?option=com_content&view=article&id=53&Ite
mid=74#symptoms
60
3.3.2.2 MacularDegenerationUSA.com
https://www.youtube.com/user/MacularVision
This website includes short individual documentaries, under the heading ‘The
15 visual problems of macular degeneration’ and there are some excellent
explanations and attempts to illustrate what each of these ‘problems’ looks
like, along with explanations of possible causes. The ‘15 problems’ are:
1) scotomas;
2) metamorphosia;
3) visual fluctuations (the variability of visual acuity and visual
performance);
4) the peripheral paradox (meaning that patients can see small objects in
their peripheral vision which makes others think eyesight is actually
better than it is);
5) photopsia;
6) photophobia;
7) glare recovery (photo stress);
8) eccentric fixation;
9) depth perception;
10) contrast sensitivity;
11) colour vision loss;
12) Charles Bonnet Syndrome;
13) binocular summation (because the brain takes in images from both eyes,
patients report closing one eye gives better visual acuity due to variations
in the condition of each eye);
14) visual acuity loss; and
15) asthenopia (visual fatigue).
While all these ‘visual problems’ are concerned with age-related macular
degeneration, they are nonetheless extremely useful and highly relevant to the
symptoms of macular dystrophy caused by Stargardt’s Disease. Some of the
61
imagery used in the production of these short videos is not too distant from the
effects this researcher experienced as a result of macular dystrophy.
3.3.2.3 University of Michigan Kellogg Eye Centre
http://www.kellogg.umich.edu/patientcare/conditions/lowvision.html
The University of Michigan Kellogg Eye Centre has a list of resources and
information on various eye diseases listed in alphabetical order. Information on
Stargardt’s Disease, available as a PDF booklet, includes: diagnostic testing
methods; genetics; patient resources; and links to services and organisations.
Signs and symptoms of the disease include: reduced visual acuity and blurry
vision; blind spots that are very small but gradually increase in size, with
generally stable peripheral vision; an effect on colour vision in later stages; a
drop in visual acuity levels to the point of legal blindness; and an onset age from
teens to early adulthood. Their booklet also states that there is a wide variation
in both the symptoms and progression of the disease from person to person,
and that not even doctors can predict the rapidity or severity of progression of
the disease. The PDF booklet103 also contains a simulated image of Stargardt’s
Disease, with the faces of two children obscured by a central scotoma, and a
blurred peripheral field, the same image used by the Foundation Fighting
Blindness (refer Illustration 7, section 3.3.2.1).
3.3.2.4 American Macular Degeneration Foundation
https://www.macular.org
The American Macular Degeneration Foundation has a number of information

resources for Stargardt’s Disease including information pages, a 20-minute DVD
103 The Stargardt’s Disease booklet published by The University of Michigan Kellogg Eye
Centre can be accessed at:
http://www.kellogg.umich.edu/patientcare/downloads/Understand-Stargardt.pdf
62
titled, ‘Stargardt’s Disease - Juvenile Macular Degeneration’, and some short
videos. The link for the page on Stargardt’s Disease is listed below,104 and
further links on this page contain a Stargardt’s Disease fact sheet, which also
lists symptoms of Fundus Flavimaculatus, Juvenile Onset Macular Degeneration
and Stargardt Macular Dystrophy. The symptoms listed in these fact sheets
include early unexplained vision loss, minimal colour vision defects, an early
onset visual loss between 10 and 20 years of age, blurry, uncorrectable vision
and a difficulty in adapting to bright light. The fact sheet also mentions
Stargardt’s as an autosomal dominant disease where there is a 50% chance of
a child inheriting the mutated gene (instead of a 25% chance). It stated that
90% of patients over 20 years are affected with vision of 20/200 and legal
blindness by their late 20s, progressing to a range of 20/800 by the age of 70.
It was not clear if this was also the case for those with the autosomal recessive
type of inheritance, which it said accounts for approximately 90 to 95 % of all
Stargardt’s Disease cases. The article also states that non-macular visual
function is retained throughout life.
The short video on this website, titled ‘What is Stargardt's Disease?’ also
includes an animation on how Stargardt’s Disease affects the Retinal Pigment
Epithelium and the photoreceptor cells of the macula. The presenter, Dr Steven
Nusinowitz, discusses the effects of Stargardt's Disease while simulations
convey the effect that those with the condition might be seeing. As the
presenter talks, his face becomes progressively blurred, until a black patch
finally covers it. The narration continues, as follows:
“If you were a patient with Stargardt's Disease and you were looking at
my face, if we were early in the disease course, my face might appear
quite blurry and my features may not be recognisable, whereas the
peripheral parts of the retina would be perfectly okay. In later course of
104 The American Macular Degeneration Foundation link to the page on Stargardt’s Disease
can be accessed here: http://www.macular.org/stargardt-disease
63
the disease, where you are actually losing a lot of cells in the macular
region, my face would be entirely black”.105
3.3.2.5 Macular Degeneration New Zealand
http://mdnz.org.nz
Macular Degeneration New Zealand contains some information on Stargardt’s

Disease. It lists symptoms as typically beginning in early adolescence with
reduced vision, which may progress to severe central vision loss, while also
noting a wide variability in age of onset, and rate of progression. Symptoms also
include a blurring of the central visual field and an alteration of vision in the
dark. The website did not show visual simulations of Stargardt’s Disease, but it
did show images of macular degeneration with the central field obscured by a
black area.
105 Follow the links to access the short video from The American Macular Degeneration
Foundation here: http://www.macular.org/stargardt-disease-presentation
64
Illustration 8: Macular Degeneration New Zealand simulation of Macular Degeneration
3.3.2.6 Fork In the Road: Vision Rehabilitation Services
http://www.lowvisionsimulators.com
Fork in the Road Visual Rehabilitation Services offers low vision simulators
through its website for a number of eye diseases, including macular
degeneration, cataract and diabetic retinopathy. The simulators are intended
to approximate eye conditions, as a way to educate those who do not have
those conditions. Although there was no specific simulator for Stargardt’s
Disease, there are simulators for macular degeneration, with different levels of
visual acuity. The following quote from the macular degeneration page explains
how central scotomas are implicated in types of macular diseases:
“Eye diseases that cause central scotomas (blind spots) include age-
related macular degeneration (also known as age-related maculopathy,
macular degeneration, AMD or ARMD), Stargardt’s disease and cone
65
dystrophy. Unlike photographs that show a clear image with a dark spot
in the centre, these simulators show a visual periphery that is fogged,
while the blind spot is white and opaque. Often, fully-sighted users are
surprised to discover how easily they can move about in a well lit
environment while, at the same time, have a great deal of trouble reading
print or recognizing faces.” 106
The image shown below is taken from the macular degeneration simulator
page; it is assumed this is how the simulator would show the scene of a vase of
flowers on a table, with a brown background. It does show a blurred peripheral
field, and there is no black spot at the centre.
Illustration 9: Fork In The Road illustration of Macular Degeneration
3.4 Personal accounts of vision loss
As seen above, the descriptions of symptoms in the visual field as a result of

Stargardt’s Disease are general in nature. Most often, they describe or illustrate
central vision loss as a blurred area, or a missing central field, a dark area, or a
106 Fork In the Road Image Simulation quote from

http://www.lowvisionsimulators.com/product/macular-degeneration-simulators
66
black spot with undisturbed peripheral vision. Images simulating these visual
symptoms are most often portrayed with a blurry black central field. In the
following section, these descriptions will be compared with those provided by
people with Stargardt’s Disease, as well as some with other forms of macular
degeneration, which can also display similar characteristics. It should be noted
that here, too, first person accounts of what the disease actually looks like are
rare. Nonetheless, these accounts of how the symptoms appear are very
valuable to our understanding of the disease itself.
3.4.1 Georgina Kleege
Contemporary American author and scholar107 Georgina Kleege was diagnosed

with Stargardt’s Disease at age 11. Kleege articulates her experience of low
vision, and its implications in a wider cultural sphere, in her book Sight Unseen.
Kleege describes the visual symptoms of Stargardt’s Disease, noting that it
changes, depending on environmental, physical and psychological factors:
“With effort, I can force myself to see my blind spot. When I stare directly
at a blank wall, this flaw in my retina does not appear as a black hole or
splotch of darkness. When I am very tired I see an irregularly shaped
blotch, which throbs slightly and is either an intense blue-violet, or a deep
teal green. More often, I see a blur slightly darker in colour than the wall
overlaid with a pattern of tiny flecks. Depending on lighting conditions
these flecks are bright white, sometimes edged in violet or a golden
yellow. Sometimes the flecks are less vividly coloured, and the wall
appears like a surface of water dappled by a breeze or soft rain.”108
107 See contact page at http://english.berkeley.edu/profiles/45 See also The Berkley

Writers at Work seminar with Georgina Kleege at
https://www.youtube.com/watch?v=SyAx4Q7zA6M
108 Kleege, Georgina. 1999. Sight unseen: New Haven, CT: Yale University Press, c1999.
Bibliographies Non-fiction, page 100
67
From this description of symptoms in Kleege’s visual field, it can be seen that
the effects of Stargardt’s are dynamic and always changing. The area that
correlates with the diseased retina, at the centre of her vision, does not appear
black to Kleege, but rather takes on the characteristics of whatever she is
looking at. Above this blind spot or scotoma is a pulsating area that changes in
colour depending on her physical state, and this too is overlaid with flecks of
changing colour whose intensity or characteristics depends on lighting in the
environment. Kleege goes on to describe how the scotoma, the area of central
vision loss usually denoted as a ‘black spot’ in common understandings of
central vision loss, is actually influenced by the area that surrounds the image
being viewed at any particular time, a phenomenon that can be understood as
the ‘filling-in’ process:
“When I look at a simple object – a white 3-by-5 inch index card on my

desk for example – it disappears. More accurately, the beige wood colour
of the desktop flows into the central blurry region of vision, while flecks of
white pulsate above. The card seems to disintegrate into tiny, quivering
particles, to dissolve into the desktop and into the air. If I shift my eyes
slightly in any direction, the card reappears. It seems to emerge from the
desk’s surface, to differentiate itself from the pale wood grain.”109
3.4.2 Mared Jarman
Mared Jarman also has Stargardt’s Disease. Mared, the subject of a UK

television documentary110 was 10 years old when she was first diagnosed with
the disease. At the age of 19, she described some of the visual symptoms she
now experiences as a result of the disease -
109 Kleege, Georgina. 1999. Sight unseen: New Haven, CT: Yale University Press, 1999. , page
100
110 A recent television news story about Mared, and that of other young people in the UK
with vision loss who find it difficult to obtain educational and vocational support, can be
accessed here: https://www.youtube.com/watch?v=HuWR7dsrnWE
68
“… strange things have started to happen now – I see lights flashing all
the time, and when I close my eyes it’s still there. Sometimes there are
strips of light going round and round for about a minute, and there’s
nothing I can do but stare.”111
Despite progressive vision loss, Mared continued to develop an interest in art

throughout her teenage years. Unfortunately, Mared’s university studies were
brought to an end, as a result of what she felt was a lack of support by the
institution to meet her needs as a student with vision impairment.
Mared’s account of the visual symptoms of Stargardt’s Disease, like Kleege’s,

does not necessarily fit with how its entoptic effects are usually portrayed in
medical texts or popular media. Lights, rather than a dark spot, are mentioned
in both these cases, a phenomenon that this researcher can corroborate with
in my own experience.
3.4.3 Lee Allen
While it is hard to find personal accounts of the visual symptoms of central

vision loss in texts, first-hand accounts in the form of visual descriptions or
portrayals of vision impairment in art, are even more rare. The case of artist Lee
Allen is an exception.
Allen was a successful artist, working from the late 1930s to the 1970s as an
ophthalmic medical illustrator and photographer at the University of Iowa’s
Department of Ophthalmology. Allen spent many years drawing the diseased
eyes of patients, meanwhile inventing ways to improve how doctors could
access and view these diseases, and also developing techniques for colour
111 The article about Mared Jarman can be accessed here

http://www.walesonline.co.uk/news/health/living-stargardst-disease-how-welsh-
6396232, accessed 16 March 2014
69
fundus photography, and even becoming very skilled at making prosthetic
eyes.112
Later in life (at the age of 78), Allen developed Age-related Macular
Degeneration (AMD). Recognising the symptoms, Allen spent an entire decade
depicting how the visual effects of this disease appeared to him.
Allen corroborated his drawings with his ophthalmologist, finding that as his
condition changed, the changes that he drew could be confirmed by ophthalmic
analysis. In other words, Allen’s visual symptoms seemed to replicate what was
happening to his eyes at a cellular level and he could capture this through art.
Allen later published his book, “A Hole in My Vision: An Artist’s View of his Own
Macular Degeneration”113 in 2000, six years before he passed away.
His ophthalmologist, Dr James Folk noted that fluorescein angiograms showing

the ‘subtle cobblestone pattern of atrophy’ in the RPE layer of Allen’s eye, very
closely matched his first drawings even though initial observations had only
shown a few yellow flecks of drusen.114
How was Allen able to ‘see’ what was happening to his own eyes? Allen
developed a technique of rapidly blinking, in a way that permitted him to be
able to see the damage to his retinas. He noted that the patterns that emerged
from his macula as he blinked were most clearly visible on a clean surface, like
a white sheet of paper, but blue skies could also produce more intense effects
with varying colours.
112 See Chapter 4 of the publication for a biography of Lee Allen. It shows a wonderful
synergy between art and ophthalmology. Blodi, C. F. 2001. "The Hole in My Vision: An
Artist's View of His Own Macular Degeneration Lee Allen; H. Stanley Thompson, MD;
James C. Folk, MD." Archives of Ophthalmology 119, no. 3: 461.
113 Blodi, C. F. 2001. "The Hole in My Vision: An Artist's View of His Own Macular
Degeneration Lee Allen; H. Stanley Thompson, MD; James C. Folk, MD." Archives of
Ophthalmology 119, no. 3: 461.
114 Ibid., 31
70
Allen would blink each eye, one at a time, very rapidly, and then draw what he
saw. These images were often of clusters of grey spots arranged in a circular
fashion. They were designed to be viewed at a distance of eight inches. Some
of these images are reproduced below:
Illustration 10: Lee Allen drawings of AMD symptoms
From left to right: left eye 1988, left eye after repetitive blinking 1988, left eye 1995
Allen was able to depict and track the changing size and density of the macular
lesions, including post-operative healing over time as his ‘dry’ macular
degeneration had become ‘wet’ and required laser surgery to halt the bleeding
in his retina.
Although Allen had AMD, there are similarities between the entoptic
phenomena caused by Age-related Macular Degeneration and Stargardt’s
Disease, possibly because both affect the area of the macula in a similar way.
His descriptions included what he saw during post - operative healing, which
may have altered aspects of his vision but the various visual phenomena he
described and drew, such as negative after images, patterns and colours over
the scotoma, and sparks of light in the visual field (even though these may have
been related to the laser treatment) certainly correlate with my experience of
Stargardt’s Disease.
71
It is important to note that Lee Allen focused his attention on depicting the
appearance of the scotoma itself rather than how it appeared in his visual field
in everyday life. Seeing how Allen's entoptic visions superimposed themselves
in the context of daily life would have been further illuminating.
3.4.4 Neurologists describe their own visual symptoms
After years of writing about the distorted visual perceptions of his clients,
neurologist and author Oliver Sachs115 also describes his own vision loss which
was caused by a malignant ocular melanoma near the optic nerve in his right
eye diagnosed in December 2005. Sacks described how this affected his visual
field and included drawings of it in his book The Mind's Eye.116
Sacks had not noticed any change to his vision in the time preceding the
discovery of the tumour, except that he now noticed visual distortion and a
wavering of horizontal and vertical lines.117
115 Visit the official Oliver Sacks website here: http://www.oliversacks.com
116 Sacks, Oliver W. 2010. The mind's eye: London: Picador, 2010.
117 Sacks later wonders to himself, “Why did I not realize the import of those closest wavy
lines, the little stars and tussocks which I had been seeing on the white ceiling of the
swimming pool for the last few months… how could I be so absurd as to dismiss them as
‘fragments of migraine’ or a reflection of my eyelashes in the goggles… (while
swimming)” see the Journal entry marked January 8, 2006 in Sacks, Oliver W. 2010. The
mind's eye: London: Picador, 2010.
72
Illustration 11: Oliver Sack's drawing of scotoma over a grid
From: The mind's eye, June 2007 journal entry
Sacks describes in some detail the entoptic effect of the cancer including how
the scotoma varied in appearance under different light conditions, describing
the ‘blinding’ lights and technicolour edges that appear in his right eye. The loss
of central vision was terrifying for Sacks, unable to even read the large
headlines of the New York Times.
Of most interest is the description of the involuntary images that arose inside
his scotoma, including faces, figures, and landscapes. Sacks pondered on the
‘visual storm’ caused by both the disease and the ensuing operation, wondering
how his brain is filling in and generating visions as a result of a lack of retinal
input to the eye. While Sacks' vision loss was not caused by macular
degenerations such as Stargardt’s Disease, the resulting entoptic effects of his
scotoma corroborate with my experience of central vision loss and its myriad
symptoms:
"My scotoma itself is not so much like a blind spot as like a window,
through which I see strange buildings, figures moving, little scenes playing
themselves before me. At other times I see writing, jumbled letters that I
cannot read – hieroglyphics or runes – all over the scotoma. … I have no
73
power to influence any of these visions; they proceed autonomously and
have no connection that I can discern with what I am thinking or feeling.
The sparkles, the visual storms, may come from my retina, but these
visions, surely, must come from a higher level, must be constructed by my
brain, calling, if indirectly, on its stock images.” 118
Sacks says he enjoyed experimenting with his scotoma, noticing that the blind
spot does not just fill in colour, but the after image that happens as well. For
example, he would look at the red surface and then at a white wall and see the
big red blob, which would last about 10 seconds before it turned white. Testing
the scotoma, like Lee Allen had done against a blue sky, he would see flocks of
birds fly into the blind spot, emerging on the other side seconds later as if
though they had been cloaked in invisibility. These observations led Sacks to
think of his visual cortex not as a ‘rigid duplicating device’ but more as an
‘averaging device capable of sampling what was presented to it and making a
statistically plausible (if not photographically accurate) representation of it.’119
These observations correlate with theories of empirical vision, which will be

considered in chapter 7 Visual Perception.
With central vision loss in his right eye, Sacks saw that whatever he looked at
‘disappeared’, leaving just a halo of vision in the periphery which he dubbed
'bagel vision', realizing that if this type of vision became permanent and
bilateral, it would be exactly what people with macular degeneration
experience.
David Hubel was a Nobel Prize winning neurophysiologist, whose work on

receptive fields in biological vision is examined in chapter 7, Visual Perception.
118 January 9 2006 entry Sacks, Oliver W. 2010. The mind's eye: London: Picador, 2010.
119 Ibid.
74
In Eye, Brain and Vision,120 while discussing the impact of cortical damage on
visual symptoms, Hubel describes the symptoms he experienced with migraine.
The relevance here is in his description of nothingness, rather than blackness,
which accords with my own experiences of vision loss due to scotomas:
“My occasional migraine attacks (luckily without the headache) produce

transient blindness, often in a large part of one visual field; if asked what
I see there, I can only say, literally, nothing – not white, grey, or black, but
just what I see directly behind – nothing”.
Hubel goes on to describe the feature of completion, a phenomena familiar to

those with ‘an island of localised blindness’.
“When someone with a scotoma looks at a line that passes through his
blind region, this is no interruption: the line is perfectly continuous…..You
don’t see black, or white or anything there, you see nothing. The
completion phenomena, plus looking at a big white screen and verifying
that there is no black hole where the optic disc is, should convince anyone
that the brain works in ways that we cannot easily predicts using intuition
alone.” 121
3.4.5 Adam Hahn’s portraits of macular degeneration
As an adjunct to the descriptions of macular degeneration, AMD and other

conditions, I have also included the work of UK based artist Adam Hahn who
120 Hubel, David H. 1988. Eye, brain, and vision , Scientific American Library series: no. 22:
New York: Scientific American Library : Distributed by W.H. Freeman, c1988. Original
emphasis in this quote, page 100
See also the Hubel website at http://hubel.med.harvard.edu
series: no. 22: New York : Scientific American Library : Distributed by W.H. Freeman,
c1988. Bibliographies, page 101
75
produced a series of portraits of people with AMD from the point of view of
their own level of vision.
Although Hahn does not have any visual defect himself, he recounts that, once
his grandmother, an AMD sufferer passed away, the family realised they had
never known how she saw the world.
‘We knew she couldn’t recognise faces or pay bills, or see photographs, so
obviously something hindered her. Most people with AMD do not seem to
speak about what they see’, said Hahn. 122
Hahn spent a year studying AMD, its causes and effects. He began his process
by interviewing subjects about how they see the world before proceeding with
the portraits. Each painting began as a photograph, which was then altered with
computer software to mimic the level of each person’s degeneration before
being committed to canvas. Hahn captures a gentle gradation from vision loss
at the centre of the field of vision to the periphery in these works.123
122 This quote is from an interview with Hahn. See

https://www.youtube.com/watch?v=YUBmQPWqvzQ
123 For the YouTube interview with Adam Hahn, see the link:
https://www.youtube.com/watch?v=YUBmQPWqvzQ
The exhibition of Adam Hahn’s works were held in London in 2009 and supported by the
AMD Alliance International and Lighthouse Foundation. See here for media
linkhttp://www.amdalliance.org/09.08.27_Lighthouse.html For the link to the macular
degeneration group of paintings by Adam Hahn, see here:
http://www.adamhahn.co.uk/md.html
76
Illustration 12 : Adam Hahn, 'Dee', 2008, 45x57 cm, oil on canvas
3.4.6 Paul Hackett
Paul Hackett is a psychologist, academic and artist who has an eye condition
known as diplopia, causing a double vision and a warping of perspective in the
visual field. Hackett completed an art practice based PhD124 incorporating:
Gestalt psychology; neuroscience; the painted grid; and his eye condition, a
combination which shares similarities with this research project. He has been
included as an artist who maintains a sustained exploration of his own visual
perceptions of visual disturbance through art. Hackett paints the landscapes
inspired by the northern hemisphere tundra. His painted axiomatic grids
become both a map referencing real places, as well as maps or references of
the visual perceptions and lived experiences of diplopia. The implications of his
124 The results of his PhD research are the basis of his publication Hackett, Paul. 2014. Fine
Art and Perceptual Neuroscience. [electronic resource] : Field of Vision and the Painted
Grid, Explorations in Cognitive Psychology: Hoboken : Taylor and Francis, 2014. Book
Electronic document.
77
work in relation to visual perception will be further discussed in chapter 6,
Grids.
3.5 Famous artists with poor vision
In the following section, the Expressionist Edvard Munch, and the French
Impressionists Edgar Degas, and Claude Monet will be examined. These artists
all had documented eye conditions, which ultimately affected their artistic
output. While it is widely known that Claude Monet had cataracts, it is possible
Edgar Degas had some type of inherited retinal disease, while Edvard Munch,
the only one to draw what his eye condition looked like, may have suffered
retinal haemorrhaging.
3.5.1 Edvard Munch
As mentioned earlier in the discussion of the work of Lee Allen, the Norwegian
painter Edvard Munch (1863 – 1944), was another artist who drew the visual
symptoms he experienced as a result of retinal disease. Having been
instrumental in the development of German Expressionism, Munch suffered an
intraocular haemorrhage in his right eye, at the age of 67, having already had
weak vision in his left eye, which has led to speculation that Munch may have
had an underlying disease that predisposed him to ocular bleeding.125 While he
did eventually recover from such a severe threat to his vision, Munch’s
contribution is that, like Lee Allen, he was able to methodically document this
experience of vision loss through his art.
125 See Michael Marmor’s feature article on Munch at The Tate website, Tate etc., Issue 25,
Edvard Munch's eyesight, Edvard Munch II, By Michael F. Marmor, 1 May 2012 at
http://www.tate.org.uk/context-comment/articles/edvard-munchs-eyesight accessed
2 June 2012
78
illustration 13: Edvard Munch, The Artist's Retina, 1930
Optical Illusion from the Eye Disease (1930) Watercolour and pencil on paper 49.7 x 47.1cm
Munch Museum/Munch-Ellingsend Group/DACS 2012 Munch Museum, Oslo
Ophthalmologists Michael Marmor and James Ravin speculate that Munch’s

haemorrhage developed in the retina, since there is every indication Munch
had a fixed blind spot, which then spread into the vitreous gel of the eye’s
interior.126
It is further speculated that Munch may have suffered from diabetic

retinopathy or aneurysm.127 However, there is some doubt that Munch suffered
from diabetic retinopathy because if this was the cause of his episode of
126 Marmor, Michael F, and James G Ravin. 2009. The Artist’s Eye: Vision and the History of
Art. New York, NY: Abrams, page 194
127 Marmor, Michael F. 2000. "Articles: A Brief History of Macular Grids. From Thomas Reid
to Edvard Munch and Marc Amsler." Survey of Ophthalmology 44:343-353. doi:
10.1016/S0039-6257(99)00113-7, See also Marmor, Michael F, and James G Ravin.
2009. The Artist’s Eye: Vision and the History of Art. New York, NY: Abrams
79
blindness in 1930, it seems unlikely he would have survived until 1944.128 Given
his frequent mention of floaters (appearing like birds when he looked up at the
sky) haemorrhagic vitreous detachment first in the right and later in the left eye
seems more likely.129 His ophthalmologist Dr Johan Reader (1889–1956),130
diagnosed a vitreous haemorrhage caused by high blood pressure at the time
of presentation in 1930. The diagnosis left the artist troubled and frightened
that he might lose his sight altogether, and Ravin notes that the changes in
Munch’s visual perception became part of his outlook on art and life.131
Munch brought into focus, in both a clinical and artistic sense, the visions that
appeared within his diseased eye, and for Marmor and Ravin, his value to
ophthalmology is that he was able to reveal a landscape that no one else could
have seen.132 Munch owed much of his success to the patronage of Dr Max
Linde, a German ophthalmologist and avid patron of art. Linde invited Munch
to stay at his house in order to paint, draw and etch members of the Linde
family. Anna Gruener133 notes that although Munch and Linde became close,
Munch did not broach the subject of his deteriorating vision with Linde, instead
seeking consultation with Johan Reader.
128 Gruener, Anna. 2014. "Out of Hours: Munch's visions from within the eye." British
Journal of General Practice 64 (618):36.
130 Ravin, James G. 1999. "The Statesman, the Artist, and the Ophthalmologist:
Clemenceau, Lautrec, and Meyer." Arch Ophthalmol 117 (7):951-954. doi:
10.1001/archopht.117.7.951.
131 Ibid.
133 Gruener, Anna. 2014. Munch’s visions from within the eye. Vol. 64. Journal Article.
80
During his recovery in August and September of 1930, Munch documented
what this blind spot looked like, and how it affected his vision under different
lighting conditions.
At times Munch drew circles of concentric colour in varying hues and

intensities, and at other times, he drew what appeared to be a bird with its
beak, positioned in various places on the paper or canvas, probably indicating
the shifting position of the blood clots and debris that appeared in his field of
vision, as his healing progressed.
The idea to draw some of these blind spots on a grid, mapping out the size and
shape of his vision loss, may have been suggested to him by his ophthalmologist
or it could simply have been an artistic methodology that many artists have long
employed. Nonetheless, this idea was well ahead of the medical practices of
the time, and Marmor and Ravin note that Munch’s grids preceded the
development of grids to track vision loss, which were published by Swiss
ophthalmologist Dr Marc Amsler, almost two decades later.134 (A further

discussion of Amsler’s Grid and art is provided in chapter 6)
81
illustration 14: Edvard Munch, drawing of a blind spot over a grid
Edvard Munch, (drawing of the blind spot over a grid) Munch Museum Oslo
Munch’s depictions of his eye disease carry added impact, as they are not only
explored through the use of grids (see Munch’s grids), but that also, Munch
places his retinotopic visions within the context of real life situations – street
scenes, rooms, portraits, creating a haunting vision of the haemorrhage as it
appeared in his visual field.135
3.5.2 Claude Monet
The period of Impressionism in art is sometimes cited as being stylistically

influenced by the myopic vision of some of its greatest practitioners. However,
the myth that Impressionism was largely attributable to poor vision disregards
its great artistic and intellectual contribution. It was not a result of myopia.136
One of its most famous was the French artist Claude Monet (1840 – 1926), who
apparently was only slightly short sighted in his left eye (his right eye was a
135 For detailed discussion of Munch’s works and entoptic visions see also Munch, Edvard,
Angela Lampe, and Clément Chéroux. 2012. Edvard Munch: the modern eye: London :
Tate, 2012. Non-fiction, pages 265 - 267
Art. New York, NY: Abrams,. Marmor, M. F. and J. G. Ravin (2009), page 19 end chapter
2
82
different story), and was given a pair of -1.75 diopter glasses by his
ophthalmologist, Dr Richard Liebreich, following a diagnosis of cataracts in
1913.137
By 1918, a frustrated Monet, who had deferred cataract surgery up until then,
described the poor vision he had suffered in those intervening years:
“I no longer perceived colours with the same intensity. I no longer painted

light with the same accuracy. Red appeared muddy to me, pinks
insipid…lower tone escaped me…What I painted was more and more dark,
more and more like an old picture…”138
Monet would then slash these canvases with his penknife, in a ‘frantic rage’.
Hearing of the dismal outcome of cataract surgery on the American
Impressionist Mary Cassatt, must only have made him despair all the more.139
By 1922 Monet had only light perception in his right eye – what followed were
three cataract operations with Dr Charles Coutela,140 and finally, a pair of yellow
and green tinted glasses to counteract his vision problems, of which, in a letter
to Dr Coutela, he had written: “…the vision of this painter is lost and all is for
138 Ravin, James G MD. "Eye Disease among the Impressionists: Monet, Cassatt, Degas, and
Pissarro." Journal of Ophthalmic Nursing & Technology 13, no. 5 (1994): 217 - 22. page
218
139 Monet is said to have been very interested in Cassatt's cataract surgery, and decided to
wait even longer for surgery on his own eyes, following her unsuccessful treatment. See
Marmor, Michael F, and James G Ravin. 2009. The Artist’s Eye: Vision and the History of
Pissarro." Journal of Ophthalmic Nursing & Technology 13, no. 5 (1994): 217 - 22. page
218, page 218
83
nothing… I hide it as much as possible but I am terribly sad and discouraged.
Life is a torture for me.”141
3.5.3 Edgar Degas
Edgar Degas (1834 – 1917) had shown symptoms that were consistent with an
inherited retinal degeneration, which progressively worsened over the course
of his adult life. Symptoms including central vision loss and increased
photophobia may point to such a prognosis. Zeynel Karcioglu believes that
because Degas’ maternal cousin, Estelle, also had a bilateral progressive
blindness from a young age, both may have inherited mutations of the ABCA4
gene (which commonly causes Stargardt’s Disease) from a common
ancestor.142
By the 1870s Degas complained of the difficulty of working in sunlight, and had
taken to wearing tinted lenses to counteract photophobia, and using a
magnifying glass for close work.143 During this period Degas wrote:
“I shall remain in the ranks of the infirm until I pass into the ranks of the
blind. It really is bitter, isn’t it? Sometimes I feel a shiver of horror.”144
In a letter to his friend, Walter Sickert, who was also a painter, Degas wrote of
Pissarro." Journal of Ophthalmic Nursing & Technology 13, no. 5 (1994): 217 - 22, page
219. See also Marmor, M. F. 2013. " An Eye Chart for Edgar Degas." JAMA
Ophthalmology 131 (10):1353-1355. doi: 10.1001/jamaophthalmol.2013.1967, a study
on the decline of Degas’ vision, evidenced by paintings made over his lifetime.
142 Karcioglu, Z. A. "Did Edgar Degas Have an Inherited Retinal Degeneration?" [In eng].
Ophthalmic Genet 28, no. 2 (Jun 2007): 51-5, page 53
Pissarro." Journal of Ophthalmic Nursing & Technology 13, no. 5 (1994): 217 – 22, page
221
144 Ibid., 221
84
“…the torment of seeing only around the blind spot, unable ever to see
the spot itself.”145
In The Artists Eye: Vision and the History of Art,146 Marmor and Ravin note that
Degas’ visual acuity had probably dropped to the level of legal blindness by the
1890s, due to central vision loss. Contemporary anecdotes mention that Degas
had chorioretinitis, a term used in the 19th century to describe conditions
affecting the retina, including both hereditary and age related macular
degeneration. This is consistent with Degas’s complaint to his artist friend
Maurice Denis that “I can see your nose but I cannot see your mouth”147
Criticisms of Degas – that he ‘exaggerated his vision problems’ in order to avoid

certain social situations, or to gain sympathy from his friends, may simply have
been a misunderstanding on the nature of macular degeneration. (Ambrose
Vollard, an art dealer apparently recounted Degas saying:
“My eyes! My poor eyes!” Immediately Degas took out his watch and said,
without the slightest hesitation, “It’s quarter past two”.148
But this can possibly be explained by the nature of central vision loss, where
faces or paintings might be lost in the void of blindness, but the familiar, bold,
large watch face, viewed at an eccentric angle at close distance, might be more
easily discernible.
Ravin further notes that while Degas’ glasses, housed at the Musée d’Orsay,
show evidence of a mild myopia, the artist’s use of bright colours in later life
145 Karcioglu, Z. A. "Did Edgar Degas Have an Inherited Retinal Degeneration?" [In eng].
Ophthalmic Genet 28, no. 2 (Jun 2007): 51-5.
Art. New York, NY: Abrams
147 Ibid., 189
148 Ibid., 191
85
indicates the need for stronger colour saturation to address its diminution
through central vision loss.149
Zeynel Karcioglu also notes that later in life Degas seemed to show a preference
for the use of red rather than blue in his paintings, a tendency common for
those who are blue-blind as a result of cone dystrophies.150
Although the exact nature of Degas’ eye condition will never be ascertained,
Degas, noting the failing vision of another artist, stated “I am convinced that
these differences in vision are of no importance. One sees as one wishes to see.
It’s false; and it is that falsity that constitutes art”.151
Degas, knowingly or not, alluded to the implication of thought in vision,152 a

subject that will be discussed in chapter 7, Visual Perception.
3.5.4 Working artists with low vision
This section, discussing working artists, who have low vision or blindness, is
included because there is a significant and growing group of people who refuse
to let vision difficulties stand in the way of their creative activity.
This group do not tend to focus on how low vision or blindness appears to them,
focusing instead on other interests that spur their artistic output, but
Pissarro." Journal of Ophthalmic Nursing & Technology 13, no. 5 (1994): 217 – 22, page
221
150 Karcioglu, Z. A. (2007). "Did Edgar Degas have an inherited retinal degeneration?"
Ophthalmic Genet 28(2): 51-55, page 54
152 Degas is said to have been obsessed with vision and its relationship to perception, see
the essay Kendall, Richard. (1988). Degas and the Contingency of Vision, The Burlington
Magazine Publications, Ltd.: 180.
86
sometimes, processes of working do illuminate how the world appears to them,
and how they circumnavigate the obstacles of vision loss.
Vision impaired artist Busser Howell153 interviews other working artists with
varying degrees of vision impairment. Many of these are photographers,
painters, and sculptors but not all of them use the sense of touch to produce
work, rather relying on memory, intuition, and the mind’s eye, which in itself
seems to have been a great source of inspiration for their work.
In his introduction Howell recalls attending a low vision conference in New York,
where the well intentioned sighted speakers were basing their presentations on
assumptions about how the blind and low vision actually perceive, or see, their
world, but he found that they were ‘grossly misguided in their assumptions
about blindness.’
He wrote the book as a guide for the blind and low vision community.
“It is telling our story: our preferences and dislikes about how we want to
experience art in public spaces, not from the medical perspective but from
the experience of those who have the condition and live and work as
artists.” 154
The volume is based on many interviews with working artists, who he asks
about the processes of working, and how they work around the problem of low
vision or blindness, further asking whether they use touch as the predominant
method of approaching their work. Such artists include Pete Eckert, Kurt
Weston and Alice Wingwall. The overwhelming message Howell wishes to
convey is that the sense of touch is not always the default sense for accessing
153 Howell, William Busser. 2013 20/20 Blindsight. New York New York: William Busser
Howell.
154 Ibid., 6
87
art, and this, Howell believes, has implications for how the low vision and blind
community are given access to art within the public gallery system.155
Pete Eckert, who has Retinitis Pigmentosa, and is considered profoundly blind,
described how he works with the camera, and how he interacts in the world.156
In terms of taking photographs he says
“The by-product is an image for sighted people, but the event is an image
for me. The product is what I bring into the sighted world, but I’m very
clear about not mixing the two so that the work of blindness is not tainted
by the sighted world”.
Eckert does most of his work in the dark, as darkness and blindness are related
for him.
“What I’m doing is dancing on the edge of perception and grabbing

information to build an image. It’s like a baby learning how to see. I’m
seeing with sound and touch. I’m actually seeing in my mind's eye. Sighted
people see the world as a painting. I see the world as if immersed in water.
I’m seeing the world in 360 degrees. So unless I’m with sighted people
that are reminding me that I’m blind, I’m sighted, I just see the world very
differently than you do.”
155 For a critical discussion of the value of touch in accessing art at the museum for the blind
and low vision community, and ways to re-think that approach, see Candlin, F. 2006.
"The dubious inheritance of touch: Art history and museum access." Journal of Visual
Culture 5 (2):137-154m, and Candlin, Fiona. 2004. "Don’t Touch! Hands Off! Art,
Blindness and the Conservation of Expertise." Body & Society 10 (1):71-90. doi:
10.1177/1357034x04041761.
156 See http://petapixel.com/2013/08/07/blind-photographer-pete-eckert-describes-how-

he-sees-and-captures-the-world/
88
In a recent study, photography was shown to be the tool of choice for many
people with low vision or blindness, with 71% having used a camera prior to
interview. The study found that,
“Blind people want to take photographs for the same reasons as everyone
else, and blind photographers around the world serve as a testament to
the importance of photography for blind people.” 157
The study also looked at the need to improve software that the low vision
community could use, particularly when taking portraits of family and friends,
to aid performance of use.
3.6 Issues in simulating vision loss
So far, there has been an examination of descriptions of symptoms in the visual

field caused by Stargardt’s Disease, in: medical texts; journals; low vision
websites; and personal accounts of the disease. These descriptions have been
both verbal, in the form of medical descriptions and personal accounts, and
visual, in the form of simulated images, which have been usually produced by
low vision websites or medically affiliated groups, and artist’s personal
accounts.
In gathering and comparing these descriptions, a pattern emerges, where we

begin to see that accounts by people who have the disease differ from the
accounts given by those who do not. Simulations of symptoms in the visual
field in particular, seem to favour illustrations of a big, blurry black spot at the
centre of the visual field, which is clearly different from both the verbal and
visual firsthand accounts of the symptoms of macular degeneration, and in
particular of Stargardt’s Disease.
157 Jayant, Chandrika, Hanjie Ji, Samuel White, and Jeffrey P. Bigham. 2011. "Supporting
blind photography." ACM SIGACCESS Conference on Computers & Accessibility:203-
210. doi: 10.1145/2049536.2049573.
89
3.7 The problem of the black spot
Why is there a tendency to portray central vision loss as a big black spot at the
centre of vision? Could it have been based on the assumption that the area of
degeneration on the macula should produce a corresponding hole in the visual
field, due to the lack of ability to detect light in that area?
The following illustration shows an OCT scan of the this researcher’s retina at
the beginning of this research project (early 2012), where the area of damage
at the macula is clearly evident as a circular formation of dead cells and debris.
OCT SCAN
illustration 15: OCT scan, the researcher’s eye
On the left is a healthy macula with a side view of the retinal layer which appears thick, while
on the right is my macula and scotoma clearly evident, with thinning retinal layer visible in the
side.
The assumption that can be made from these images is that that 'dead cells
equals no visual input, and no visual input equals no light perception, and no
light perception equals total blackness'. However, this depiction bears little
resemblance to the actual lived experience of the disease, as has been seen
above. It appears to echo the simplified definition of blindness that agencies
like the World Health Organization and the International Council of
Ophthalmology have worked so hard to eradicate, as discussed in section 2.7.5
WHO ICD-9.
The problem is, an area of dead cells does not necessarily produce a black space
for those with central vision loss, as evidenced in many of the personal accounts
90
discussed above, and it does not account for the role of perception, or the
‘filling in’ phenomenon, to accommodate for changes in the visual field, all of
which will be discussed further on.
That is, the brain does not necessarily show what the cells are reporting back -
there is an interaction between the incoming messages received by the retina
and the ways the feedback and feed forward loops (brain activity moving back
and forth across regions of the brain) interpret the incoming information in the
cortex. David Hubel alludes to this in Eye Brain and Vision, using the example of
the regular blind spot we all have at the optic disc, when viewing a sheet of
white paper, “We don’t see our blind spot as a black hole… the brain works in
ways that we cannot easily predict using intuition alone.”158
Such misrepresentations, common to our understanding of central vision loss,

may point to poor assumptions being made about the effects of vision loss on
the visual field. Such assumptions point to a lack of awareness of the role of
perception and the plasticity of the brain to accommodate visual field loss.
Furthermore, these assumptions indicate a lack of consultation with the visually
impaired about how the visual field is actually affected for them – if they are
not in the discussion then who is going to tell the people who make the pictures
that it is not so?
The continued depiction of vision loss as a big black or blurry spot at the centre
of the visual field also points to the probability that these images were
produced by people who are not vision impaired themselves. Since they have
no personal experience of how it actually appears, how are they going to
illustrate something with accuracy?
The black spot type of representation of vision loss also reveals the continued
operation of age-old misconceptions of blindness that are echoed in the idea
series: no. 22: New York : Scientific American Library : Distributed by W.H. Freeman,
c1988. Bibliographies Non-fiction. Page 101
91
of blackness. This further underscores the notably absent voice of the vision
impaired, in discourses of low vision and blindness, both historically and
contemporarily, across medical fields and wider social contexts. These are
issues that will be examined further on in this chapter.
Furthermore, these representations point to the difficulty in measuring,

articulating and defining levels of low vision, as seen in the previous chapter on
the difficulties in measuring visual acuity levels in low vision, and also reveal the
difficulty in capturing a more universal portrayal of the effects of vision loss that
would apply to everyone with the condition. The black spot might be operating
as the generic ‘catch all’ for the effect of central vision loss.
The problem with the black spot as an adequate representation of central vision
loss is also that, because it is static and unchanging, it does not show other
factors that influence the visual field, such as environmental, physical or
psychological determinants. As will be demonstrated, these elements all play a
major role in a dynamic, ever changing, and ever diminishing visual field that is
continuously compromised by the stress of cellular degradation and loss.
3.8 Scotoma
In the medical texts, journals, websites and personal accounts reviewed so far,
central vision loss was not always defined as a scotoma. The concept of
scotoma is expanded on here, as it is an important part of the symptoms of
Stargardt’s Disease.
A scotoma is commonly referred to as a ‘blind spot’, which is present in all

human eyes at the location of the optic chasm where no photoreceptors exist
(refer Figure 2 is a diagram showing the distribution of photoreceptor rods and
cones). In the case of retinal disease, however, a scotoma denotes the area of
a persistent visual field defect, or blind spot, within the otherwise normal field
92
of one or both eyes.159 While it can be classified into many different types,160
the following section will briefly focus on several forms of scotoma, including
central, absolute, relative, positive, negative and scintillating, which are defined
below:161
Absolute scotoma - in which there is no light perception;
Central scotoma - the area that corresponds to the point of fixation in central
vision;
Ring scotoma - also known as an annular scotoma, an area of vision loss

surrounding the point of fixation;
Negative scotoma - in which the area appears like a blank spot (which we are
usually unaware of);
Positive scotoma - appears as a dark spot that the patient is usually aware of;
Relative scotoma - an area of diminished perception of light, where loss is

generally restricted to the light of certain wavelengths; and
Scintillating scotoma - a positive and luminous area in the visual field.
159 “Visual Field Defects”, Source: Encyclopædia Britannica, November, 2013Item:

89145857, EBSCOhost, accessed 11 April 2014
160 For a wide variety of scotomas and definitions see, Levin, L. A., F. H. Adler, P. L. Kaufman
and A. Alm (2011). Adler's physiology of the eye [electronic resource], Edingburg :
Saunders/Elsevier, c2011.11th ed. / editors, Leonard A. Levin ... [et al.] ; managing
editors, Paul L. Kaufman, Albert Alm, page 662 onwards
See also the definition of central scotomas, pericentral and paricentral central scotomas,
cecal and nerve fibre bundle in Stein, H. A., R. M. Stein and M. I. Freeman (2013). The
ophthalmic assistant : a text for allied and associated ophthalmic personnel / edited by
Harold A. Stein, Raymond M. Stein, Melvin I. Freeman, Edinburgh ; New York : Elsevier
Saunders, c2013. 9th ed, page 347
161 Definitions Adapted from Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.
(Accessed online 11 April 2014 via Unimelb Library)
93
Carl Friedrich Richard Forster (1825 – 1902), may have been the first
ophthalmologist to define the difference between a negative and positive
scotoma, with the negative scotoma defined as a void, while the positive
scotoma defined as an area of darkness or lightness evident to the patient. He
may have also been the first to publish a medical illustration of metamorphosia,
using a small square grid162,163 (refer chapter 6 Grids).
In some ways, the black spot can be seen as a representation of a few types of
scotomas, denoting the area of vision loss. But as seen above, the black spot
type of representation gives the impression that this area is static and
unchanging. Scotomas, in their variety and intensity, are far more dynamic and
intriguing than a black spot.
What types of scotomas are generally present in Stargardt’s Disease?
In a study measuring eccentric fixation in 173 Stargardt’s patients, 95 subjects

showed a ring scotoma, although at later stages of the disease, most patients
developed an absolute central scotoma, thus losing the ability to fixate on
targets, or analyse detailed images.164,165 This article defined scotomas thus:
Absolute: areas of no perception at maximum stimulus intensity (1,000

apostilbs for manual perimetry and 20 dB below normal in automated
perimetry):
162 Amsler, Marc. 1953. "Earliest Symptoms of Diseases of the Macula." British Journal of
Ophthalmology 37, 521.
10.1016/S0039-6257(99)00113-7.
164 Messias, A., J. Reinhard, A. A. Velasco e Cruz, K. Dietz, M. MacKeben and S. Trauzettel-
Klosinski (2007). "Eccentric Fixation in Stargardt’s Disease Assessed by Tübingen
Perimetry." Investigative Ophthalmology & Visual Science 48(12): 5815-5822.
165 Interestingly, this study excluded those with Fundus Flavimaculatus, but didn’t explain
why it differentiated FFM from Stargardt’s. Did the authors of the study believe there
was a difference in eccentric fixation between the two?
94
Relative: areas with lower sensitivity than normal but above Absolute: and
Ring: a central island of normal or moderately reduced sensitivity surrounded

by absolute scotoma in three or more visual field quadrants.
The study further asserted that a relative scotoma is the only scotoma type that
occurred in central fixation and in eccentric fixation; while a ring scotoma was
always associated with central fixation, and an absolute scotoma was always
associated with eccentric fixation. As expected, eyes with no scotoma always
showed central fixation.
But, as was seen with visual acuity measurements, determining the exact
quality and size of a scotoma can also be difficult.
Dr Duane Geruschat,166 Coordinator of Research at The Maryland School for the

Blind, asserts that, while we can have absolute or relative scotomas in testing
visual fields for scotomas, and areas of depression in the macula, there needs
to be an awareness of the fact that there can be fluctuations in testing
condition:
"My experience with practitioners is that they recognize that visual acuity
fluctuates based on environmental conditions, which explains the limited
relationship between clinical and functional acuity. What I haven't always
seen practitioners appreciate is that clinical visual fields have the same
type of problem. In school, some of us learned that visual fields were like
166 Refer website: http://www.sauerburger.org/dona/simulators.htm
See also an article by Geruschat et al, on the evolution of low vision health care over the
past century, and the shift from dissuading those with low vision to ‘not waste’ their
residual vision in the early part of last century, to a shift in low vision rehabilitation and
education in using remaining vision. See Geruschat, Duane R., and Anne L. Corn. 2006.
"A look back: 100 years of literature on low vision." Journal of Visual Impairment &
Blindness 100 (11):646-704.
95
a picket fence, suggesting that there is a sight / no-sight line. What you
can now understand with the concepts of relative scotoma, depression,
and an appreciation of the testing conditions, is that visual fields actually
are affected by test conditions. Differing responses based on test
conditions are acknowledged as the zone of uncertainty. What can make
these concepts useful to practitioners is to appreciate that visual fields do
and will fluctuate, just like acuity can and will fluctuate." 167
As scotomas are one of the major symptoms of Stargardt’s Disease, what is

known of such scotomas can be compared with the eyewitness accounts of
those who have experienced them, such as Lee Allen or Georgina Kleege, or the
individuals whose portraits were painted by Adam Hahn.
Every human eye has a blind spot at the position of the optic disc, in which no
information can be taken in by the eye due to the absence of photoreceptor
cells. For Georgina Kleege the experience of the Stargardt’s Disease induced
scotoma is exactly the same, except that for those with the condition, the blind
spot is simply bigger and more central to the field of vision.168 Furthermore, as
peripheral vision still enables movement, the blind spot actually becomes less
noticeable, giving way to impressionistic forms of light and colour.169
In The Object Stares Back,170 James Elkins describes the disease-induced

scotoma as an ‘oppressive’ black spot at the centre of vision, readily apparent
167 This quote by Dr Duane Geruschat is from the website Make Your Own Vision
Impairment Simulators, by Dona Sauerburger, COMS at
http://www.sauerburger.org/dona/simulators.htm, last accessed 28 April 2015.
168 Kleege, G. (1999). Sight Unseen. New Haven, CT, Yale University Press, page 99
169 Ibid., 145
170 Elkins, J. (1996). The Object Stares Back: On The Nature of Seeing. New York, NY, Simon
& Shuster,
96
to those with ‘medical blindness’. Elkins describes the scotoma in the case of
macular degeneration, as an area of ‘haziness or black spots, rather than a pure
absence of sight’, which would cause the ‘subject to not be blind to the
blindness’ itself.171
Elkins had been commenting on the 1991-1992 exhibition entitled Seeing

Without Sight,172 which attempted to depict the conditions of blindness, in
which central vision loss was shown to have an oppressive visibility that made
it hard to see anything else but the blindness:
“These photographs are intended to be literal embodiments of conditions

that are normally subjective, but they cannot begin to evoke the
oppressive presence of a cloud at the very centre of the eye. Still, they
serve to show how medical blindness, as opposed to its analogues in
ordinary seeing, is visible to the blind person: in fact, here it is hard to look
at anything but the blind spot.”173
171 Ibid., 216
172 Smithsonian Institution Travelling Exhibition, 1991 - 1992
& Shuster, page 218
97
illustration 16: Seeing Without Sight, simulation of a blind spot
A simulation of macular degeneration from the exhibition Seeing Without Sight, from Update
1991 – 1992, Smithsonian Institution Travelling Exhibition Service Schneidereith and Sons
1991, page 95 Note Need to find the original source for this photograph - This image is taken
from The Object Stares Back, by James Elkins.
Elkins goes on to describe how the normal blind spot present in all human eyes
is so different to the black spot depicted in macular degeneration. However, his
description of this normal blind spot is far more indicative of this researcher’s
experience of macular degeneration, than that he describes of eye disease:
“The blind spot is easy to locate by covering one eye, fixing the open eye
on a dark spot, and slowly looking in the direction of your nose. In a flash
the spot will disappear, and in its place – and this is the interesting thing
98
– there is nothing. It appears that the eye has automatically filled in the
missing place with whatever colour or texture is in the field of vision.”174
Elkins goes on to say that, according to psychology, the eye does not actually
fill in the blind spot, but rather the mind has us believe that this is so. Therefore
“..the blind spot is pure absence of vision and cannot be experienced at

all…it is neither a visible absence (a darkness ) nor a constructed absence
(a hole papered over by extrapolating from visible objects ) but an
invisible absence ; an absence whose invisibility is itself invisible.175
In correlating this description with both Kleege’s and this researcher’s

experience of blindness, Elkins’ description of the common-every-day
phenomenon of the blind spot, found in every body’s eyes, seems so much
more accurate than the description, both verbal and visual, found in either
literature, art or medical texts.
But Elkins cannot know this, since he can only assume what the actual
experience of blindness is like in a second hand perspective, which to him is the
‘dark grey annoyance that is suffered in actual partial blindness’. Elkins cannot
know that sometimes the blind person is aware of the condition of their eyes,
and at other times oblivious to it.
It may be that, given this researcher’s experience and the accounts discussed
above by those with vision loss, scotomas may reveal an absence of vision that
is constantly present, in a constant presence of absence.
& Shuster, page 218
175 Ibid., 219
99
3.9 Metamorphopsia
Metamorphopsia, also referred to as Metamorphosia, is a symptom in which

lines can appear to be distorted, wavy, undulating, broken, or simply absent.
Many circumstances, such as strokes, or other medical disorders or medications
can cause the perception of metamorphopsia. In this section this phenomenon,
as a result of retinal diseases and of Stargardt’s Disease, will be considered.
For Dr Marc Amsler, metamorphopsia was one of the hallmarks of the earliest
signs of macular disease, and the development of his macular grids was also
designed to detect this symptom.176 A discussion of Amsler’s Grids, in relation
to scotomas and metamorphopsia is to be found in chapter 6, Grids.
Metamorphopsia can be evident for those with Age Related Macular

Degeneration and Stargardt’s Disease, and there is a long history of its
relationship with diseases of the retina and its implications for visual
perception. Both Marc Amsler177 and Michael Marmor178 have written on the
subject of metamorphopsia, vision loss and its relationship with visual
perception, particularly within historical contexts. A brief discussion is included
below concerning Thomas Reid and descriptions of metamorphopsia, as these
have proved to be insightful to the condition.
176 See also Martin-Gonzalez, Anabel, Ines Lanzl, Ramin Khoramnia, and Nassir Navab. 2011.
"Simulation and modeling of metamorphopsia with a deformable Amsler grid." Studies
In Health Technology And Informatics 163:336-342, for a recent investigation of
metamorphosia and the Amsler Grid.
10.1016/S0039-6257(99)00113-7.
100
3.9.1 Thomas Reid
In 1761, the Scottish philosopher Thomas Reid (1710-1796), while attempting

to observe the transit of Venus, inadvertently directed his telescope toward the
sun, (a habit he was prone to in his youth, and one which he subsequently cited
as a warning to others). This apparently caused damage, (perhaps solar
retinopathy), to the retina of his right eye.179
Reid described the multiple effects of this damage to his retina, including the
appearance of a ‘lucid spot, which trembled much like the image of the sun seen
from reflection by water’ 180whenever he shut his eyes. This effect diminished
as time passed, but left his vision visibly dimmer in that eye, and caused him to
observe a very marked distortion of vision, that we can recognize as
metamorphopsia. Reid noticed this phenomenon most typically when he gazed
upon the staves of a music book, noticing
"…That a straight line in some circumstances, appears to the right eye to

have a curvature to it. Thus, when I look upon a music-book, and, shutting
my left eye, direct the right to a point of the middle line of the five which
compose the staff of music; the middle line appears dim indeed, at that
point to which the eye is directed, but straight; at the same time the two
lines above it, and the two below it, appear to be bent outwards, and to
be more distant from each other, and from the middle line, then at other
parts of the staff to which the eye is not directed.”181
179 See Marmor, Michael F. 2000. "Articles: A Brief History of Macular Grids. From Thomas
Reid to Edvard Munch and Marc Amsler." Survey of Ophthalmology 44:343-353. doi:
10.1016/S0039-6257(99)00113-7., page 349
180 Reid, T. (1785). An inquiry into the human mind, [electronic resource] : on the principles
of common sense. By Thomas Reid, D. D. Professor of Moral Philosophy in the University
of Glasgow, London : printed for T. Cadell in the Strand, London; and J. Bell and W.
Creech, Edinburgh, M,DCC,LXXXV. [1785] The fourth edition corrected., page 280
181 Ibid., 281 - 283
101
3.10 Cortical completion – the 'filling in' phenomenon
Cortical completion or the 'filling in' phenomenon can be described as the

phenomenon by which patterns, colours, or textures can appear to be within
an area in the visual field that is known not to be receiving any actual visual
input. The cortical completion process therefore could mean that neurons are
being stimulated in such a way as to cause us to perceive visual stimuli in an
area of our visual field, even though such visual stimulus is in fact non-existent.
Aligning this with what is known about receptive field properties of neurons,
perceptual filling in may occur as a result of the activity of receptive field
surrounds,182 indicating that there is an interpolation of visual information
occurring across regions of the brain where that information is not
present.183,184 This phenomenon may occur with contours, edges, surfaces,
colours and other qualities of visual perception.
Since the phenomenon of cortical completion affects our perceptions, it further

complicates the appearance of the scotoma or metamorphosia. This is an issue
that has been at the heart of criticisms concerning the ability of the Amsler Grid
to detect these symptoms in the visual field, and is also an added complication
for vision researchers during clinical investigation of vision-impaired subjects.
As seen in section 3.4.4 Neurologists describe their own visual symptoms, both
Oliver Sacks and David Hubel discuss the phenomenon of cortical completion,
with Sacks describing at length the interplay between his scotoma and how the
182 Gilbert, Charles D., and Torsten N. Wiesel. 1992. "Receptive field dynamics in adult
primary visual cortex." Nature (6365):150.
183 Pessoa, Luiz, and Peter De Weerd. 2003. Filling-in. [electronic resource] : from
perceptual completion to cortical reorganization: Oxford ; New York : Oxford University
Press, 2003. Bibliographies Non-fiction Computer File, page 1
184 See also Ramachandran, V. S., R. L. Gregory, and W. Aiken. 1993. "- Perceptual Fading of
Visual Texture Borders." - 33 (- 5-6):- 721. This early study also documented the
presence of persistent ‘after images’ after the stimuli was removed.
102
processes of cortical completion tried to adapt to the area of invisibility in his
visual field.
It is not simply within the realms of our imaginations, but rather this
phenomenon has a neural basis, although where, how and why cortical
completion occurs is still a subject of investigation. Studies have been done on
cortical completion with some researchers finding important differences
between cortical completion of the normal blind spot at the optic disc, and the
cortical completion processes that occur as a result of scotomas. This finding
may demonstrate that the process involved in cortical completion that occurs
as a result of scotomas, can be influenced by both spatial and temporal
conditions. Interestingly, these researchers also found that the filling in
phenomenon can be influenced by attention.185
The phenomenon of cortical completion is included here as one of the major

symptoms of macular dystrophy that I experience. While I have explored some
of these aspects from the neuroscientific perspective, and found that my
observations have a neural basis, the predominant goal in this research project
was to explore how this phenomenon appears to me, through the processes of
art making. In any event, it seems that the processes of cortical completion are
strongly related to the descriptions of Charles Bonnet Syndrome, discussed
below. In my experience, it is hard to define where cortical completion ends
and non-existent visual percepts begin.186
185 See Foreword by V.S Ramachandran, in Pessoa, Luiz, and Peter De Weerd. 2003. Filling-
in. [electronic resource] : from perceptual completion to cortical reorganization: Oxford
; New York : Oxford University Press, 2003. Bibliographies Non-fiction Computer File.,
page XV
186 Ramachandran has suggested calling receptive fields 'deceptive fields',

because"...ongoing visual stimulation can change the structure of the receptive fed by
disinhibiting silent surrounds", thereby altering what is being perceived by the visual
brain. If this is the case, the distinction between existent and non-existent visual
percepts becomes even more entangeld. See th Foreword by V.S Ramachandran, in
Pessoa, Luiz, and Peter De Weerd. 2003. Filling-in. [electronic resource] : from
Press, 2003. Bibliographies Non-fiction Computer File., in the section Artificial Scotomas
103
3.11 Charles Bonnet Syndrome
Charles Bonnet Syndrome is named after Charles Bonnet (1720-1793), who

described the visual ‘hallucinations’ of his grandfather, who suffered vision loss
due to cataracts.
The condition is epitomised by visual ‘apparitions’ experienced by people with

normal psychological profiles, but who have a significant loss of vision, due to
conditions such as age-related macular degeneration. People report seeing
faces, figures, buildings, textures, colours and all other manner of percept in
the visual field, but importantly, are completely aware that these percepts are
not real. A related condition, known as Photopsia, (the appearance of lights in
the visual field), is also associated with vision loss and phantom percepts. Both
these conditions may arise as a result of insufficient information coming into
the visual cortex, which then triggers an excitory neural response, in order to
compensate for the lack of retinal input.
A recent study examined the prevalence of Charles Bonnet Syndrome among

subjects with vision loss due to a range of disorders, finding that 31 per cent
experience the phenomenon, and that the phenomenon itself is not age
dependent.187 Patients reported a wide variety of hallucinations, most
particularly at night, predominantly of animals such as mice and cockroaches,
and also of flowers. Photopsia symptoms were also noted, with patients
describing rings of light, coloured circles, or straight lines of light. Much of the
light described was white, but very often purple.
A second study of Charles Bonnet Syndrome focused on subjects with age-

related macular degeneration, examining whether degrees of central vision loss
187 Tatlıpınar, Sinan, Sibel Kadayıfçılar, Bora Eldem, and Peykan Türkçüogğùlu. 2001.
"Prevalence of photopsias and CHarles Bonnet Syndrome: evaluation of eighty cases
with low vision." Neuro-Ophthalmology 25 (4):193.
104
contributed to more complex visual hallucinations. The study found that the
extent of visual loss was not a factor in predicting whether a patient was more
likely to experience Charles Bonnet Syndrome, nor was there a correlation
between the complexity of hallucinations and the progression of vision loss.188
The visual complexity of these hallucinations has also been reported, with
simple hallucinations being classified as those that comprise colours, shapes
and patterns, while the more complex variety incorporate figures, animals,
faces, and so forth. Charles Bonnet Syndrome has also been described at length
by Oliver Sacks, who has related his own experience due to an ocular
melanoma, (refer section 3.4.4 Neurologists describe their own visual
symptoms), as well as those of his patients. Interestingly, he also describes a
multitude of Visual effect over his entire visual field, rather than simply within
the area of absence.189,190
His descriptions of simple sparks, stripes, lights, and colours, accords with this
researcher’s own experience of seeing things that are not present. I certainly
do experience peculiar hallucinations over the area of the scotoma, both simple
and complex, and I also see a lot of light over my visual field. I mistake objects
for other objects, until I have approached the object of my perception to verify
whether it is there or not. I am not completely sure if this is always Charles
Bonnet Syndrome - whether this is simply my mind’s attempt to re-inscribe the
area of absence in my visual field, or whether I am just making mistakes about
a situation based on assumptions derived from poor visual input (for example
jumping into the wrong car). In this way the scotoma, the filling in
188 Abbou, E. J., G. B. Connor, P. H. Artes, and R. V. Abadi. 2007. "- Visual loss and visual
hallucinations in patients with age-related macular degeneration (Charles Bonnet
Syndrome)." - 48 (- 3):- 1423.
189 Sacks, Oliver W. 2010. The mind's eye: London: Picador, 2010. Bibliographies Non-
fiction, June 2007 entry..
190 Sacks, Oliver talks about Charles Bonnet Syndrome (Ted Talks),
https://www.youtube.com/watch?v=SgOTaXhbqPQ
105
phenomenon, and the re-inscription of the visual field as a result of such visual
hallucinatory phenomena, are inextricably linked.
3.12 Simulating central vision loss
Symptoms such as Cortical Completion, Photopsia, and Charles Bonnet

Syndrome are infrequently mentioned with descriptions of the effects of
macular dystrophy, and they are most certainly never illustrated.
Ophthalmologist Michael Marmor and David Marmor have gone someway in

trying to determine a more accurate simulation of central vision loss with
computer software imaging.191
Marmor and Marmor note that photographs do not show how we see the world
in a momentary instance. The camera shows perfect visual acuity across the
entire visual field, but this is not the case. Our visual system, for the sake of
efficiency,192 is in reality a small island of fine detail vision, (of approximately
1°, or about the area of a thumb nail on an outstretched hand), while the rest
of the visual field is an area of blurred information (with a visual acuity equal to
legal blindness). Our world may appear clear to us because we continuously
scan across the visual field with our macula, gathering up a detailed image that
is assembled in the visual cortex. With the peripheral field outside this area of
central vision containing only softly defined (legally blind) forms, illustrations of
macular disease in medical texts, websites and other publications, of a black
spot at the centre of the photograph, with perfect visual acuity throughout the
periphery are not accurate.
191 Marmor, David J., and Michael F. Marmor. 2010. "Simulating Vision With and Without
Macular Disease." Archives of Ophthalmology 128 (1):117.
192 See a Ted Talk by vision neuroscientist Luis M Martinez on the energy requirements of
the brain and its strategies of visual efficiency (a reason why we have only central visual
acuity) at https://www.youtube.com/watch?v=LsBWLHc2ezY PUT in BIB
106
Using Adobe After Effects (an animation software program), Marmor and
Marmor developed a set of algorithmic parameters that calibrate blur,
pixilation, distance from viewing object, and ‘eccentricity fall off’. These
parameters can be set for either still or moving images, and in the study, they
were applied to both faces and reading material, showing both the actual view
of momentary vision without central vision loss, and also showing the effect of
macular degeneration.
Marmor and Marmor also created a visual acuity table showing the values used
to construct the simulations in which the degree of eccentricity was matched
with the level of visual acuity. The usefulness of the algorithmic software
becomes evident in showing various maculopathies, as seen in the illustrations
below using both text and face images.
107
illustration 17: Simulating central vision loss using Adobe After Effects, with text and faces
Printed text showing different types of macular lesions, with A, Dense scotoma. B,
fragmented scotoma C, Region of irregular distortion when viewed 36 cm from the page. The
image of people. Shows A, Dense scotoma, producing 20/200 visual acuity. B, fragmented
(irregular) C, Region of irregular distortion. The measures of eccentricity correct when viewed
23 cm from the page.
Marmor and Marmor's study points to a need to provide better visual images
of macular disease for the educative purpose of both ophthalmologists and
patients. While the study helps explain how visual field loss affects activities of
daily living, like reading, face recognition or mobility, the study does not include
the effects of other symptoms in the visual field such as cortical completion,
which may also impact on the visual field in vision loss, further complicating the
chaotic effects of this disease.193
193 Colenbrander has also used photographs that were altered to depict various degrees of
visual acuity loss. Once again, these images show a degree of blurriness, but do not show
other effects associated with central vision loss. See Colenbrander, August. 2010.
108
In another study examining the entoptic effects of vision loss, with Glaucoma
patients, researchers developed a test using six different scenarios of the same
photograph, each ‘doctored’ in a way to represent various aspects of their vision
loss.194 Subjects chose which were most accurate for them, and each type of
visual group or characteristic was noted. In the end, scores were added for each
type of visual effect, with the outcome that the most often experienced visual
effect, like macular degeneration, was not patches of black holes in the visual
field, but rather, areas of total absence, in which the filling in phenomena
created quite a different causal effect than that expected of glaucoma
patients.195
Eli Peli has also examined the difficulty of accurately simulating various retinal
diseases or neurological disorders that cause visual defects. Peli has researched
both vision simulation devices, and simulations of vision loss using images,
finding that there is enormous difficulty, and subsequent inaccuracy, in such
methods of visual simulation, and this adds to the difficulties of educating both
healthcare professionals and their patients. This in turn can have an impact on
a better understanding of the impact of diseases on the visual field, a negative
influence on the effectiveness of visual aids, and implications for the successful
rehabilitation of vision loss patients. Peli identifies ‘Photoshop Disease’ (the
plethora of inaccurate images proliferated by such software programs), adding
"Assessment of functional vision and its rehabilitation." Acta Ophthalmologica 88

(2):163-173. doi: 10.1111/j.1755-3768.2009.01670.x.
194 Crabb, David P., Nicholas D. Smith, Fiona C. Glen, Robyn Burton, and David F. Garway-
Heath. 2013. "Original article: How Does Glaucoma Look? Patient Perception of Visual
Field Loss." Ophthalmology 120:1120-1126. doi: 10.1016/j.ophtha.2012.11.043.
195 In a thesis by CC Boucard, the filling in phenomena of both glaucoma patients and AMD
patients was studied, with the hypothesis being that AMD patients would develop
neural pathways to overcome visual deficiencies. It showed that both groups
experienced loss of vision rather than a black spot and that both experienced the filling
in phenomena. See Boucard, CC. 2006. "Neuro Imaging of Visual Field Defects-." PhD,
University of Groningen (RUG) and the Faculty of Medicine of the RUG Graduate School
of Behavioural and Cognitive Neuroscience (BCN) (ISBN number: 90-367-2621-2 ISBN
electronic version: 90-367-2620-4).
109
that Photoshop is not in itself the problem, but rather, the lack of understanding
of the situation, and a need to test and verify the veracity of vision simulation
devices and vision simulation illustrations, tasks that are rarely done.196
The difficulties in simulating the effects of macular dystrophy can be

compounded by the incorrect use of the photographs and computer software.
With better understanding of some of the symptoms of vision loss we can strive
to make such images more accurate. However, even though Marmor, Marmor
and Peli attempt to point us to a more accurate visual description of the effects
of eye disease, there is still the issue of cortical completion, pulsation, and
movement, and other symptoms, which are not included in simulations of
vision loss. As Peli notes, there is still the need to test the validity of such images.
In the next section, the historic perspective of vision loss and blindness will be
examined. This may explain why there has been a distinct lack of the ‘patient
voice’ in this regard. By including the patient in such discourses, we may come
to a more accurate description of the symptoms of vision loss, and therefore a
better understanding of its impact in daily life.
3.13 Historic and contemporary ideas of blindness and low

vision
Why have there been so few accounts from the perspective of those with low
vision or blindness?
This section considers some of the issues that surround discourses of vision, in
both historical and contemporary contexts, and whether an absence of the
‘blind voice’ has contributed to misunderstandings on the nature of vision loss.
196 Refer articles by Peli including, Eli, Peli, Luo Gang, Bowers Alex, and Rensing Noa. 2009.
"Development and Evaluation of Vision Multiplexing Decices for Vision Impairments."
International Journal on Artificial Intelligence Tools 18 (3):365 - 378., and
http://www.aaopt.org/sites/default/files/LV-06.pdf put in bib
110
3.13.1 Medical and metaphoric blindness
Without sufficient discourse from the perspective of those who experience less
or no sight, the difference between medical, and metaphoric blindness grows.
The use of blindness as a metaphoric device has long endured in both text and
art.
In Blindness as Metaphor,197 Naomi Schor writes about her own experience

with vision loss, and the difficulty in separating metaphor from the actual
condition of sight loss.198
Schor argues narratives such as those found in the classical Greek tragedies,
posit blindness as a divine punishment, meted out by the gods to those humans
who transgress the natural order, for example, the fate of Oedipus. In order to
restore the natural world order, the gods blind Oedipus, who is transformed
and renewed by this punishment.
Metaphors of blindness also carry with them the message that the primacy of
sight is itself a type of blindness, and as it diminishes, wisdom and inner sight
grow to replace it.199 That blindness can be fortunate, as pointed out by
Socrates, is one of the great myths of blindness.200
197 Schor, Naomi. "Blindness as Metaphor." Differences, A Journal of Feminist Cultural

Studies, Duke University Press, Vo l11, Issue 2, 1999
198 Schor consulted an ophthalmologist after seeing ‘flame like floaters’ and an overlay of
‘filthy tape’ in her visual field. A detached retina was diagnosed. She had four
unsuccessful operations to correct it, after which the retina of her other eye also became
detached. To add to the misery, cataracts then developed in both eyes, see page 82 - 83
of the above reference.

Studies, Duke University Press, Vo l11, Issue 2, 1999, page 84
200 Ibid., 85
111
In The Meaning of Blindness201 Michael Monbeck states that persistent
mythologising of blindness, has led to many culturally negative attitudes and
misconceptions about vision loss.202 Monbeck argues that the meaning of
blindness, deeply symbolic and universal, functions within profound archetypal
narratives in many creation myths around the world.
These myths bring to play the idea of lightness and darkness, linking them with
binary concepts of day and night, and heaven and earth that are deeply rooted
in human consciousness.203 Ideas like this emphasise the binaries of eye sight
and sight loss.
Thus, lightness becomes associated with the sun,204 creation, goodness, purity,
knowledge, power, wisdom, consciousness, order; darkness with chaos,
disorder, malice, ignorance, unconsciousness and closure, and for Monbeck,
these two basic symbols are ‘naturally present in the mythology of every
culture past and present.’205
201 Monbeck, Michael E. 1973. The meaning of blindness; attitudes toward blindness and
blind people: Bloomington, Indiana University Press [1973]. Bibliographies Non-fiction.
202 By the same token, the idea of embellishing those with vision loss with extra-sensory
attributes has a similar objectifying result. See an essay by Bolt, David. 2006. "Beneficial
Blindness: Literary Representations and the so called Positive stereotyping of people
with impaired vision "Journal of Disability Studies 12.
blind people: Bloomington, Indiana University Press [1973]. Bibliographies Non-fiction,
page 120
204 Jacques Derrida also reiterates these themes, linking them with ancient connections,
and with the Platonic analogies of the sensible sun, the cause of sight and the image of
the eye – for the sun resembles the eye, the most “helioform” of all sense organs - to
the intelligible sun, See Derrida, Jacques. 1993. Memoirs of the blind : the self-portrait
and other ruins / Jacques Derrida ; translated by Pascale-Anne Brault and Michael Naas:
Chicago : University of Chicago Press, 1993. Non-fiction., page 15
page 122
112
Even in its symbolic connection with the sun, Monbeck asserts, the eye both
physically and symbolically functions as the receiver of light in the world;
representing consciousness, the ‘I’, the window to the soul; the
acknowledgement of its magical powers ‘nearly universal’ in cultures and
religions through time.
Conversely then, (and in the tradition of binary opposites), blindness must be

associated with darkness, and all that it denotes, (like the setting of the sun
each day), for the blind eye can neither perceive light, nor identify things in the
world.
Blindness, by extension is chaos, is unconsciousness, is death.
But this also presupposes that people with vision loss see only darkness, an idea
played out in visual representations of retinal disease, (refer 3.7 The problem
of the black spot).
If medical and metaphoric blindness were to be more clearly differentiated, we

might begin demystifying the experience of low vision and blindness. Including
the ‘blind voice; in discourses of blindness would help in this process.
For Naomi Schor, Georgina Kleege’s book Sight Unseen, written from the
standpoint of a visually impaired woman, manages to uncouple narratives of
blindness from myth.
For Kleege, blindness just is. Intrinsically a part of her like the shape of her
hands, or her ‘predilection for salty snacks’, it comprises just one part of
identity. While it is ever present in her life, it is not always at the centre of her
consciousness, neither outside her self-identity, nor integral to it:
113
“…Blindness is normal to me. I do not spend my days lamenting my lost
sight; most days I don’t even think about it.206
Kleege acknowledges that just as every sighted person’s view of the world is
unique, so too is every blind person’s experience different. The goal in her book
is not only to show “here’s what I see”, but also “here’s what you see”, and to
“…show both what’s unique and what’s universal. I invite the reader to
cast a blind eye on both vision and blindness, and to catch a glimpse of
sight unseen."207
Kleege calls into question the dynamics of gazing, by making ‘specularity’ the
spectacle. In putting our culturally subconscious ideas about vision itself under
investigation,208 her autobiography, devoid of idealism, and absent of
metaphor,209 reveals that there have been many factors at play in concepts of
blindness, including, argues Susannah B. Mintz,210 the narratives of an ‘able-
bodied ideology,211 in discourses of disability’.212
206 Kleege, Georgina. 1999. Sight Unseen. New Haven, CT: Yale University Press.
bibliography, nonfiction, page 4
207 Kleege, Georgina. 1999. Sight Unseen. New Haven, CT: Yale University Press.
bibliography, nonfiction, page 5
208 Mintz, Susannah B. "Invisible Disability: Georgina Kleege's Sight Unseen." NWSA Journal
The John Hopkins University Press 14, no. 3 (2002): 155 – 77 page 157

210 Mintz, Susannah B. "Invisible Disability: Georgina Kleege's Sight Unseen." NWSA Journal
The John Hopkins University Press 14, no. no. 3 (2002): 155 - 77.
211 Ibid., 158
212 Ibid., 155
114
3.13.2 Portrayals of the blind
As Naomi Schor writes, an impairment of any of the five senses is a challenge,

and any loss of ‘sensual apprehension of the world’ can be seen as a ‘diminution
of human potential’ by a culture that focuses on the ideals of the perfect body.
However, if vision continues to be metaphorized, or viewed as monstrous, then
representation is placed in the service of ideology.213
Kleege also points out that one of the primary drivers of blindness as metaphor,
has been the role of “…the blind man as instructive spectacle, useful to
everyone but himself,”214 a point we are reminded of with Pieter Bruegel the
Elder’s215 painting, The Parable of the Blind Leading the Blind.

214 Kleege, Georgina. 1999. Sight unseen: New Haven, CT : Yale University Press, c1999.
215 Pieter Bruegel The Elder, 1525 – 1569, Flemish Renaissance painter and printmaker,
known for his detailed landscape and every day scenes of Flemish life.
115
illustration 18: Bruegel , Blind Leading the Blind
Pieter Bruegel the Elder 1568, signed at bottom left “BRVEGEL.M.D.LX.VIII.” tempera on
canvas, 86 cm × 154 cm, Museo di Capodimonte, Naples
Michael Berinson argues that during this period, the sense of sight became
linked with linear perspective that could map, chart and conquer space.216 (refer
section 6.2 Grids for a discussion on linear perspective and visual perception).
In this way, the eye, gazing over the terrain, could enable the landscape to be
conquered and possessed through mechanical aids that were able to quantify
vision and articulate space.217
The sense of sight now becomes linked with power and acquisition. An observer
could
216 Bensimon, Marc. 1972. "The Significance of Eye Imagery in the Renaissance from Bosch
to Montaigne." Yale French Studies 47 (Image and Symbol in the Renaissance):266 –
290, page 271
217 Ibid., page 272
116
“…gaze over that realm in a single moment…space was not an area over
which one moved to encounter places in turn, because all places appeared
at the same moment to the observer who no longer inhabited the surface
that contained them.”218
Those who could see, could conquer, could possess not only territory but also
history, and in history, memory. In contrast, the blind, by virtue of their inability
to gaze, could not observe space, but could only be observed in it.
Almost 400 years later, images of the blind as poor, wretched and dispossessed,
like those captured by the American photographer Lewis Hines around the
beginning of the twentieth century, are not only reminiscent of a long tradition
of metaphorical blindness as an inner state of despair, but also show the very
real social, political and emotional estrangement faced by the blind.
illustration 19: Lewis W Hine, Blind Beggar, Lawton, Oklahoma , 1917
218 Ucko, Peter, and Robert Layton. 1998. Archaeology and Anthropology of Landscape.
[electronic resource] : Shaping Your Landscape, EBL: London : Routledge, 1998.
BookElectronic document, page 23
117
For Michael Monbeck, attitude change toward blindness and blind people is
enormously difficult, citing that information campaigns to inform the sighted
may eradicate intellectual prejudice, but that emotional prejudice will linger
on.219 The symbolic meaning of blindness persists. For Monbeck, the way to
effect real change is through a ‘two pronged attack’ of education about
blindness, along with a recognition of the need for ’…differentiation between
the symbolic and the actual meaning of blindness and between the blind person
himself and the projections that he carries’.220
Therefore, the more clearly the disparity between the symbolic meanings of
blindness, (in which prejudices are located), and the actual experience of
blindness, can be shown, the more likely it is that those misrepresentations will
subside.
3.13.3 Changing attitudes
Attitudes may have begun to shift over time, from the belief that blindness was
incurable, to the idea that blindness was treatable and, potentially, curable.
Naomi Schor marks the period of the 18th century with a ‘nearly obsessive
preoccupation’ of blindness as being in some way due to medical
advancements, such as the development of cataract surgery.221 The ability to
measure visual acuity levels, map visual fields, repair detached retinas and
page 151
220 Ibid., 158

Studies, Duke University Press, Vo l11, Issue 2, 1999, page 90. William Cheselden
performed the cataract operation in 1728. Bensimon also cites the pioneer surgeon
Ambroise Paré and his ability to remove cataracts. (See Bensimon, Marc. 1972. "The
Significance of Eye Imagery in the Renaissance from Bosch to Montaigne." Yale French
Studies 47 (Image and Symbol in the Renaissance):266 – 290, page 279)
118
conduct all sorts of ophthalmic procedures can be seen within the context of a
shift from lack of sight to loss of sight, and its possible restoration.
Current advancements in the treatment of sight threatening eye diseases,

coupled with an ageing population that carries an increased risk of developing
conditions of blindness, will aid the shift toward a more medically informed
understanding of low vision.
3.14 A personal view of vision loss
In the early stages of this researcher’s diagnosis there was only the small
amount of absence that I noticed, like the moment I saw the crumb disappear
on the kitchen counter. The scotoma must not have been more than a dot. I
could still drive, read and recognise faces at this stage.
My visual acuity could be corrected, at about -250. That is, I was still wearing
prescription glasses for myopia. There were no wavy, distorted or broken lines
at this stage of the disease.
Within about six months things became progressively worse. The scotoma
became much larger, and I recall I could no longer see a car in front of me –
which was the day I stopped driving!
Reading was much more difficult by then, and I distinctly remember trying to
find a comfortable position to place my eyes above the written line in order to
read peripherally, and I had to move the reading material closer and closer
which if I was reading in public often meant people commenting on my need to
‘get glasses’ (this was often from well-meaning elderly people), while I was
travelling on the train or bus or tram. Constant comments like these soon put
an end to reading in public, as I got tired of trying to explain my eye condition,
and that glasses wouldn't help.
I clearly remember there was the tiniest point of vision somewhere within the
central scotoma, like a small island of visibility. I noticed this when reading, as I
119
thought I could see a portion of black print right in the middle. One day I placed
my finger on this tiny point of visibility and then used my peripheral vision to
check if that was indeed where the printed letter was. In actual fact, it was not.
It was almost as if the cells were repositioned and fractured, displacing what I
was seeing and throwing it into the periphery. My probably imagined tiny island
of vision soon disappeared. As the condition worsened I adopted strategies to
circumnavigate the scotoma. By this stage I had progressed to a level of ‘legal
blindness’.
Predominantly, it was the sensation of absence that I felt. There was never a
black spot at the centre of my vision, just the persistent absence. There were
still no wavy, blurred lines. Within about six years from the diagnosis, I
remember seeing movement like rain drops in my peripheral field. This was
more marked near windows or light sources. These raindrops may have been
what some people report as ‘visual snow’, but I have not discovered this in
published symptoms of Stargardt’s Disease. It was frightening as I thought the
disease was spreading across the retina, or the scotoma was ‘breaking out’ and
that I would lose more of my vision.
The ‘visual snow’ is always present now in the periphery. It is constantly

scattering around and distorting. It is hard to tell if it is white or if it has no
intrinsic colour, rather taking on the colours in the periphery and rippling them,
very much like rain on a window pain. The central scotoma is larger and intense.
It also moves and pulsates. It is always pumping like a woofer on a high powered
speaker. Again, it has no colour of its own, but is rather the constant presence
of absence and overlaying it is a strange ring, or halo, of faint orange. The effect
is not unlike having gone out into the sun, looking at it, and coming back into a
dark room. You see the after effect of the sun, dark and bright at the same time.
In the dark, this is also present and very noticeable. It is usually a pulsating
orange light, but it changes in colour, intensity and rhythm, depending on
physical and environmental variables.
120
There is also an array of optical effects. Now I do get blurred and wavy lines in
the peripheral field, particularly if I am tired. These are most noticeable after
reading on the computer or iPad (I can barely read any print even with the
strongest hand held magnifiers). Sometimes the words will be smeared like
someone has taken a small Q tip (a cotton bud) and run oil all over the page,
and at other times the letters are as if though written on a mirror that has been
smashed into fragments. The essential point is that this aspect is also dynamic.
Last night I might have encountered broken, shattered, jagged lines. Tonight it
might be 'smeary and wavy'.
There are many other visual effects that I experience, including the cortical
completion that develops over the area of absence. There is an infinite variety
of effects, as a result of this filling-in process. The processes of cortical
completion seem to move towards the appearance of objects, colours, shapes,
stripes, and all other manner of visual effects, in such a way that it is very hard
to distinguish between filling-in and the visual apparitions associated with
Charles Bonnet Syndrome. As the art works that form the basis of this research
project are examined, the myriad effects of vision loss will become evident.
Above all, it is hoped that the reader realises the entoptic effects of central
vision loss cannot adequately be represented by a static, stable, black spot at
the centre of the visual field, since the visual experience of macular
degeneration is far more dynamic and complicated, with symptoms that are
constantly being mediated by physical, psychological, and environmental
factors.
3.15 Chapter summary
In this chapter some of the ways in which the symptoms of Stargardt’s Disease
have been portrayed were examined. Medical texts, journals and websites that
deal with issues of eye health, both in Australia and internationally were
reviewed. How those with central vision loss describe symptoms themselves,
121
in both texts and art were also explored. This was followed by an examination
of some well-known artists’ descriptions of how vision loss appeared to them.
A discussion around the difficulty of simulating vision loss revealed that there
was indeed a need to show how retinal diseases might appear from the
perspective of the patient, but how, invariably, many simulations show
misrepresentations of the impact of the disease on the visual field. Symptoms
such as scotomas, metamorphopsia, cortical completion and other symptoms
were also examined.
Trying to find the source of such misrepresentations led to a brief overview of

the historic notions of blindness, in which mythology and metaphor are
intertwined with this medical condition. The absence of the ‘blind voice’ in
discourses of vision became apparent, which may have also have contributed
to the mythologizing of vision loss. The chapter ends with a discussion of how
the disease appears to this author, which is quite different to the symptoms
described by medical texts, journals and websites.
Finding the gaps between the representations of macular degeneration and the
actual symptoms experienced by those with vision loss, leads to the purpose of
this research, which is, to show how the symptoms actually appear from the
perspective of the lived experience.
The following chapter will examine how this aim is fulfilled in the research
project, by analysing the symptoms, exploring the methods and examining
some of the findings of this research project.
122
SECTION 2: ART
123
124
4 Methodologies
4.1 Introduction
This chapter discusses aspects of methodology as it relates to studio based

creative art research and this research project, including conceptual and
philosophical frameworks and the methods chosen and why they were chosen.
Explanation is provided on how the research project was constructed, dividing
aspects of vision loss into various characteristics, which is titled ‘characteristics
of the void’. A description is provided of each of the main characteristics of
these symptoms of vision loss as I have experienced them. Explanation is
provided on how these characteristics were paired with the various methods of
art production. A brief discussion on the way the research was conducted both
in terms of art making, and researching texts through the prism of macular
dystrophy Is also provided.
4.2 Art practice as research and the methodological

framework
The aim of this research project has been to explore, define and articulate, as
accurately and authentically as possible, the experience of macular dystrophy
upon the visual field, from a personal perspective, so that the lived phenomena
of low vision can be captured, recorded and conveyed in order to be better
understood.
Such an aim places the nature of this inquiry in a wholly visual context, where
aspects of vision loss brought about by macular degeneration can be
interrogated in the very arena where its impact is felt most: in the field of vision,
as it is experienced in everyday life.
125
Ironically, it is the very visual medium of art that can best express the absence
of vision, communicating that impact more vividly, accurately and immediately
than any other means. In considering that one of the most critical questions for
the justification of art practice as research is, according to authors Estelle
Barratt and Barbara Bolt, “What new knowledge /understandings did the studio
enquiry and methodology generate that may not have been revealed through
other research approaches?”,222 then this research project answers that it
cannot have met its research objectives in any way other than through an art
practice investigation.
What I propose here is that there is no better, or indeed more adequate, way to
answer the question ‘what does macular dystrophy look like from the
perspective of the patient?’ except to find those answers with the tools
provided by rigorous, systematic art practice as research.
Such a question, which can be posed scientifically, is best answered artistically.

While scientists have the ability to peer into the eyes of the patient, there is no
scientific instrument to date that enables them to peer out from the eyes of
that individual. This points also to what Graeme Sullivan perceives as the limits
of empirical inquiry alone,223 for that research approach has only given us a
partial account of the effect of macular dystrophy upon the patient’s field of
vision.
Moreover, the research aim demands a personal response to the lived

experience of macular dystrophy, where the researcher is both subject and
object, both observed and observing, in the enquiry. In fulfilling that aim, the
222 Barrett, Estelle, and Barbara Dr Bolt. 2007. Practice as research: approaches to creative
arts enquiry / edited by Estelle Barrett and Barbara Bolt: London ; New York : I.B. Tauris
; New York : Distributed in the USA by Palgrave Macmillan, 2007. Bibliographies Non-
fiction, page 1
223 Sullivan, Graeme. 2010. Art practice as research: inquiry in visual arts / Graeme Sullivan:
Thousand Oaks [Calif.] : Sage Publications, 2010. 2nd ed. Bibliographies Non-fiction,
page 36
126
gaps in our knowledge of the impact of vision loss, through such diseases, can
also be simultaneously addressed, from an authentic, first person perspective,
and from the all too often absent voice of the patient.
For these crucial reasons, I have placed my research project within an art
practice-based and phenomenological methodological framework, in direct
response to the demands of both the research question and aim. This chapter
discusses the justification for my methodological approach, and the issues that
surround the nature of such an enquiry.224 It is from this vantage point – and
those issues - that I then formulate a method of working, which seeks to not
only fulfil the requirements of the research project, but also answers the
questions of truthfulness, validity and academic rigor that such methodological
approaches can raise.
For Graeme Sullivan, art practice as research in the academic arena is grossly
underrated as a means of acquiring legitimate knowledge, even though its
methods of inquiry have the ‘capacity to transform human understanding’.225
For Sullivan, the issue for art departments in higher education contexts is the
requirement that research undertaken in these faculties must justify itself in
terms of ‘quantifiable outcomes’, particularly within the framework of
information economies. The positivist paradigms of the quantitative research
224 See a paper by Sally Berridge on the trials and tribulations of navigating through an art-
practice based PhD, and some of the critical issues that are examined along the way,
including the subjectivity of the project, the production of knowledge, and the role of
the exegesis. Berridge, Sally. 2007. "Arts-based research and the Creative PhD: Art and
dreadful manners," Conference Paper, The 12th Annual Conference of the Australian
Association of Writing Programs, Canberra, Australia, 21-23 November 2007, School of
Creative Communication University of Canberra
http://www.canberra.edu.au/researchrepository/items/dca7b81f-9b87-4f01-3a51-
0d5c61667dfb/1/
225 Sullivan, Graeme. 2010. Art practice as research: inquiry in visual arts / Graeme Sullivan:
Thousand Oaks [Calif.] : Sage Publications, 2010. 2nd ed. Bibliographies Non-fiction,
page xix
127
approach are seen as diametrical to more constructivist qualitative research
methodologies, within which art practice as research can be positioned.
How can this research process, based on one individual’s experience of macular
dystrophy, be considered to have ‘quantifiable outcomes’? How can it produce
‘legitimate knowledge?’
To successfully answer the research question, this project demands that the
outcomes be viewed across different academic contexts. This may highlight
differences between: scientific knowledge and visual knowing; and objective
observation and subjective seeing.
The lived experience of the researcher, combined with the validity of the
research approach, will capture and accurately communicate the ‘eye witness’
experience of a sufferer of Macular Dystrophy. The primary outcome of this
research will be that the true impact of central vision loss will be better
understood.
There is then a great need to ensure criticality, truthfulness and validity in the
research methodology, enabling this art practice as research project to become
useful and translational to related fields of enquiry.
This project has two intended outcomes – first, it seeks to produce a body of
artwork and secondly it intends to produce a set of data from that artwork that
can be viewed as a viable, credible and reliable documentation of the impact of
vision loss through macular dystrophy. These research aims demand that the
work must function as both art and science.
But even within the context of this research project, there may be a greater
truth behind the apparent divide, as the demand for ‘quantifiable outcomes’
spawns a deeper interrogation of the nature of art practice as research, and its
128
place in the scheme of knowledge production. Helga Nowotny226 asserts that
research in art and science, though separated due to historical trajectories, are
far more closely related, and share very much in common, with their motivation
to explore the unknown (or move from the known into the unknown), and
where uncertainty is the common starting point for both research fields.227
Furthermore, SØren KjØrup notes that research, art and science are all cultural
phenomena whose characteristics are simply too diverse to fit into standard
definitions with their own specific sets of conditions: there are always
exceptions.228
Defining boundaries between disciplines may be not only limiting, as Sullivan

argues, but even erroneous, as new mergings of research in cognition and
culture uncover the intimate relationship between visual representation,
knowledge about the world and the culture that both produces and
accumulates those visual representations and knowledge. Furthermore,
developments in neuroscience are showing us that the neural pathways of the
brain process incoming sensory information through feeling states and mental
imagery first, and well before, we form rationalizations that can then be
formulated as knowledge. In this new alignment of how we come to know
things, it can be seen that emotion precedes logic, or rationality.229 Sensory
226 Nowotny, Helga. "Foreword" in Biggs, Michael, and Henrik Karlsson. 2010. The
Routledge Companion to Research in the Arts. [electronic resource], EBL: Hoboken :
Taylor & Francis Ltd, 2010. Book Electronic document. Nowotny sees the return of
research in art practice as a project originating in the Renaissance and, after centuries
of separation, finally returning to close the loop.
227 See Grierson, Elizabeth M. 2010. "Scrutinizing Studio Art and Its Study: Historical
Relations and Contemporary Conditions." Journal of Aesthetic Education 44 (2):111-
123, for further discussions on art practice as research, its historical context and
developments in recent decades.
228 KjØrup, SØren. "Pleading for Plurality: Artistic and Other Kinds of Research." In Biggs,
Michael, and Henrik Karlsson. 2010. The Routledge Companion to Research in the Arts.
[electronic resource], EBL: Hoboken : Taylor & Francis Ltd, 2010. Book Electronic
document, Page 33 of 457
229 See Susan Grrenfield’s thoughts on emotion and consciousness in the section 7.5
Theories of visual perception, art and the research project, and also in Greenfield, Susan
129
perceptions, including those that form and trigger visual processes (and hence
make artwork), are inherent in how things come to be known – perception and
conception are interlinked, as are the brain and mind.230 As such, subjective
experience is now better understood to be very much involved in human
knowing and that learning (and subsequently knowing) takes place in the
process of those neurons triggering connections through myriad pathways in
the brain. This of course, has implications for the research project at hand, as
those very pathways to knowing – the senses – are explored in the way they
relate to impairment to a particular organ – the eye, and how it is affected by
diseases such as macular dystrophy.
In his essay “In praise of subjective truths”,231 Samir Zeki also underscores the
inescapable value of subjectivity in all research, noting that Hubel and Wiesel’s
ground breaking discoveries were very often based on what they observed
during the course of their research,232 rather than the use of elaborate
instruments.
The divide between objectivity and subjectivity may be dubious, since it does
not acknowledge the fact that “…the only perceptual reality the brain has is the
A., and Toby F. T. Collins. 2005. "A neuroscientific approach to consciousness." Progress
in Brain Research 150:11,586-23,587. doi: 10.1016/S0079-6123(05)50002-5.
230 Sullivam, Graeme "Artistic Cognition and Creativity." Chap. 6, in Biggs, Michael, and
Henrik Karlsson. 2010. The Routledge Companion to Research in the Arts. [electronic
resource], EBL: Hoboken : Taylor & Francis Ltd, 2010. Book Electronic document, page
101
231 Zeki, Semir. 2009. "In praise of subjective truths." The Journal of Physiology 587 (Pt
12):2825-2835. doi: 10.1113/jphysiol.2009.170415.
232 Hubel and Wiesel note in their methodology for one particular experiment that instead
of a slow computer which often increased the noise of subject responses, “We
concluded that for both speed and for precision it is hard to beat judgments based on
the human ear.” See Hubel, David H., and Torsten N. Wiesel. 1974. "Sequence regularity
and geometry of orientation columns in the monkey striate cortex." Journal of
Comparative Neurology 158 (3):267.
130
subjective brain reality.”233 Visual ‘illusions’ can also underscore this point,
since 'objectively’ speaking, an observer can know that something is not the
actual case, even though they may perceive it to be so. This phenomenon is
further discussed in chapter 7, Visual Perception.
For Sullivan, methodologies are no longer constrained by discipline boundaries

and academia may now be in a post-disciplinary environment234 where
knowledge is not just the exclusive domain of one research paradigm over
another, no longer rationalist versus expressive.235
In this project, art can step into areas where science cannot – into the lived
embodied knowing of the self, through the processes of art practice as research,
which lies beyond exclusively empirical observations of the other. The
knowledge gained to date about macular dystrophy through science can, in
turn, inform, support or query what is discovered through this artistic inquiry.
The dialogue that develops between these two research fields contributes to
the knowledge gathered so far in regard to this condition, and aspects of this
dialogue are covered in the following chapters.
There is no consensus as to exactly how art practice as research methodology

should be framed,236 given the recent (re)entry and rapid expansion of this
233 Zeki, Semir. 2009. "In praise of subjective truths." The Journal of Physiology 587 (Pt
12):2825-2835. doi: 10.1113/jphysiol.2009.170415, page 2826
234 Sullivan, Graeme "Artistic Cognition and Creativity." Chap. 6 in Biggs, Michael, and
Henrik Karlsson. 2010. The Routledge Companion to Research in the Arts. [electronic
resource], EBL: Hoboken : Taylor & Francis Ltd, 2010. Book Electronic document, page
116
235 There is an argument regarding the production of knowledge and scientific paradigms
in Stringer, Ernest T. 1996. Action Research: A Handbook for Practitioners. Thousand
Oaks, London, New Delhi: Sage Publications, in the chapter titled “This is not the End”,
in particular the sub heading, “But It’s Not Scientific” The Question of Legitimacy, page
144
236 One UK University Art Faculty comes with a ‘health warning’ to its students on its Art
Research Methodologies course web page as a result of the complex and continuously
131
academic field. It seems each practitioner in the artistic research endeavour
must approach the task of methodology from an individual viewpoint.237
There are however, some general characteristics of art practice as research, and
these are the creation of artworks, the reflection or response to that artwork,
and the theoretical and contextual analysis of that artwork. Cora Marshall sees
the art practice as research methodological structure as a double helix, where
the relationship between art practice, criticism and theory are symbiotic and
interdependent.238 In this model, praxis (goal directed action of the studio) is
reflected upon in constant, critical analysis to the point when it becomes
inextricably entwined with the constant cycling and recycling of assessment,
reflection, analysis and re-action until it forms into reflexive practice, and
culminates into the praxis – exegesis model. For authors Malins and Gray this
pro-active action research model – this art practice as research – signifies a
global shift and reappraisal of the production of knowledge, as Sullivan has
noted, between science and the humanities,.239 For Barrett and Bolt, this deeply
reflexive practice (even its methodological transparency) signifies that the
emerging art practice as research methodologies in the PhD context. See

http://stare.com/beryl/asunder/mods/met1.htm first accessed on 14 August 2012
237 George Petelin says what characterizes good research is methodological rigor and that
in art practice as research, it is procedure rather than simply the production of artefacts
that should be a key consideration. See Petelin, George. 2010. "It's Research, But Not As
We Know It!" Scope: Contemporary Research Topics (Art & Design) 5/6:8-16.
238 Marshall, Cora. "A Research Design for Studio-Based Research in Art." Teaching Artist
Journal 8, no. 2 (2010): 77-87, page 79
239 Malins, Julian, Carole Gray, and in collaboration with Katie Bunnell and Eleanor Wheeler.
1995. "Appropriate Research Methodologies for Artists, Designers, Craftspersons:
Research as a Learning Process ". The Centre For Research In Art And Design Gray's
School of Art, Faculty of Design, The Robert Gordon University, Aberdeen, Scotland, UK.
[PDF]. Appropriate Research Methodologies for Artists, Designers –
CiteSeerciteseerx.ist.psu.edu/viewdoc/download?doi...1... - United States, page 3
132
materials and methods, often seen as a ‘given’ in scientific approaches, are
never left unquestioned in artistic research.240
The art making (process), and the art made (product), are central to the
structure of art practice as research, and the making and the made are part of
what is known as reflecting in action, or through action under a framework of
the look – think – act241 model of action research.242 This heightens the
importance of the artwork in the research process, as it becomes both a mode
of inquiry, and an outcome of that research – both residue (of the action
performed) and artefact, heightening the importance of the art practitioner as
researcher who becomes central to the inquiry at hand. What becomes
apparent to the methodological framework of this research project is that there
are three essential components to the inquiry: the researcher; the action of
making; and the result or outcome of the research, which is the artwork itself.
All these components are perpetually (and inescapably), tied to the experience
of Macular Degeneration and its attenuating effect on the field of vision.
Based on the discussions so far, the art practice as research methodology model
could appear quite simple. In the case of this research project, the research
question came about because of the frustration and inadequacy of explaining
what the researcher could and could not see as a result of inherited juvenile
240 Barrett, Estelle, and Barbara Dr Bolt. 2007. Practice as research : approaches to creative
arts enquiry / edited by Estelle Barrett and Barbara Bolt: London ; New York : I.B. Tauris
; New York : Distributed in the USA by Palgrave Macmillan, 2007. Bibliographies Non-
fiction, page 191
241 See the look think act diagram in Stringer, Ernest T. 1996. Action research : a handbook
for practitioners: Thousand Oaks, Calif. : Sage Publications, c1996, Bibliographies Non-
fiction, page 17.
242 See Malins, Julian, Carole Gray, and in collaboration with Katie Bunnell and Eleanor
Wheeler. 1995. "Appropriate Research Methodologies for Artists, Designers,
Craftspersons: Research as a Learning Process ". The Centre For Research In Art And
Design Gray's School of Art, Faculty of Design, The Robert Gordon University, Aberdeen,
Scotland, UK. [PDF] Appropriate Research Methodologies for Artists, Designers –
CiteSeer citeseerx.ist.psu.edu/viewdoc/download?doi...1... - United States, accessed 14
August 2012
133
macular dystrophy. The question came about long before the literature review
was conducted, born out of a lived experience, and not an academic query.
However, the literature review confirmed how inaccurate representations of
macular dystrophy are, and how little was known in the wider community of its
impact on the visual field of those living with the condition.
Therefore, the research project started with the research question, then a
literature review, then the formulating of a research aim. Based on the question
and the aim, a ‘best course’ of action was undertaken, which was to conduct
my inquiry through an art practice as research methodology which would result
in a body of artwork and an accompanying dissertation. These were quite
simple, linear steps, but within the art practice as research framework things
become ‘cyclical’, and ‘braided’ in structure, revealing the true nature of art
practice as a complex, dynamic system of inquiry, within which theoretical
implications are always inherent in the methods themselves, and in which equal
emphasis is always placed on the research, the process of making and the
resultant art work - a cycle that is tightly interlocking and often incomplete. This
relationship between maker and made always has implications for the research
outcomes, and some of these: trustworthiness; art work as data; and the notion
of art as artefact, are discussed below in relation to the research project.
4.2.1 Trustworthiness
Is this truly a documentation of how macular dystrophy appears to me?
How can trustworthiness be established in art practice as research and how can
it be applied to this research project?
Qualitative research methodologies employ strategies such as thick description,

triangulation, member checking and reflexivity to ensure trustworthiness and
134
validity in the research project.243 For Richards and Morse, this assurance comes
in the consistency between the research question, aim and the methods
employed, as well as a full accounting of each significant step in the research
process.244 In art practice as research, this can be achieved with a consistent,
reflexive working through in the studio that is also accompanied by written
documentation in the form of a research journal that records the reflections,
thoughts and discoveries the artist makes along the research journey.
In the studio research approach there is no escaping from the physical effects
of Macular Degeneration, whether the researcher is seeking to render those
effects in artwork or not. But the slow process of working through each image
and asking “is this how it appears to me in this situation?” is also captured in
the process of reflective writing on the activities of the studio even through the
dissertation itself. The trustworthiness of the work can be best assessed when
viewed as a collective body of work, where a myriad of images can be compared
and contrasted with each other, as they have accumulated over time and
through the constant processes of working and reflecting.
What is known scientifically about the effect of macular degeneration upon the
field of vision is triangulated with the art works, the dissertation that has
developed around theories and conceptual frameworks, and the existing body
of knowledge about the research concerns. Thus the research project is
constantly assessed within and between these structures. Authors Curtin and
243 Richards, Lyn, and Janice M Morse. Readme First for a User's Guide to Qualitative
Research. USA: SAGE Publications, 2013.
Patton, Michael Quinn. Qualitative Research and Evaluation Methods. 3rd edition ed.:
Sage Publications, Thousand Oaks, London, New Delhi, 2002.
Curtin, Michael, and Ellie Fossey. "Appraising the Trustworthiness of Qualitative Studies:
Guidelines for Occupational Therapists." Australian Occupational Therapy Journal 54,
no. 2 (2007): 88-94.
Research. USA: SAGE Publications, 2013, page 95
135
Fossey identify three types of qualitative research triangulation: data
triangulation; researcher triangulation; and methodological triangulation, in
the search for research trustworthiness and validity.
documentation
of art work
made about
macular
dystrophy
practice based
research of
macular
dystrophy
existing artwork
knowledge produced
about macular about macular
dystrophy dystrophy
Figure 4: Triangulation in the research project
Data triangulation derives from the juxtaposition of artwork, dissertation,

reading and writing, and the way knowledge gathered in the project sits in
relation to scientific data about vision loss, but there is also another type of data
triangulation that is essential to this project and that is the juxtaposition of
artworks against other art work and other mediums that are used in the studio
investigation. The artworks are developed using the five general methods of art
making: painting; photography; drawing; printmaking; and multi-media. Each of
these carry with them different ways of perceiving or exploring the impact of
vision loss and its recording into artistic form. Exploring, contrasting and even
136
moving images across different media give us a deeper reading of the effects of
macular dystrophy so that an understanding of how some of its characteristics
operate can be achieved. This process of making, contrasting, documenting and
analysing also contributes to what qualitative researchers call ‘thick
description’, which Curtin and Fossey characterize as ‘a detailed description of
the context and circumstances surrounding the phenomena being studied.’245
Research data that are gathered in qualitative studies (especially in
ethnographic approaches) can include field notes, observations, audio
recordings, audio visual recordings, primary and secondary documents,
interviews and photographs. In this research project, the thick description that
arises from the constant searching to visually describe the phenomena of vision
loss in everyday contexts also becomes part of the field notes, the documents
and the data, which are ‘coded’ for themes, compared and then analysed within
wider conceptual frameworks. In art practice as research, this concept of thick
description can also be characterized as thinking in language, thinking in context
and thinking in, and through, mediums of art making, so that the artist can
arrive at a place of ‘visual knowing’.246 How different ways of making images
around the concept of vision loss impact on our knowledge about the disease,
and how they help, hinder or uncover the phenomenon are discussed later in
this this chapter and in chapters 5 and 6.
4.3 Artwork as data
Can this artwork actually be seen as data about macular dystrophy?
245 Curtin, Michael, and Ellie Fossey. "Appraising the Trustworthiness of Qualitative Studies:
Guidelines for Occupational Therapists." Australian Occupational Therapy Journal 54,
no. 2 (2007): 88-94.
246 Sullivan, Graeme. Art Practice as Research: Inquiry in Visual Arts / Graeme Sullivan.
Thousand Oaks [Calif.]: Sage Publications, 2010. 2nd ed., 2010. page 132 - 137
137
While images such as drawings, paintings and photographs have been used as
data in the social sciences, artwork is not often thought of as data in itself. There
has been consistent debate about the subjectivity of researchers gathering
images. However, as Sullivan notes,247 there is now an acknowledgement that
the making of images by the researcher is a legitimate form of data in research.
In this particular research project, the images are always tied to the activity of
working through the prism of macular dystrophy while making work about
macular dystrophy. The artwork is always data, or evidence, not only of the
research process, but also evidence of an artist working through and within the
prism of her own research question.
4.4 Art
Is this artwork an artefact, a result of performing the research inquiry, and if so

what is its relationship to knowledge about macular dystrophy?
For Stephen Scrivener, the artwork (art object) is not the container of
knowledge, but rather, the conveyer of knowledge so that it becomes a
‘knowledge transfer medium’.248 Scrivener further defines the artwork (in the
research project) as a knowledge artefact, an artefact designed with the
intention of communicating knowledge.
The creative artefact has a central place in art practice as research, when the
research is practice based as opposed to practice led,249 as the research project
Thousand Oaks [Calif.] : Sage Publications, 2010, 2nd ed., 2010. Bibliographies, page 52
-53
248 Scrivener, S. (2002) The art object does not embody a form of knowledge. Working
Papers in Art and Design 2 Retrieved 11 November 2012 from URL
http://sitem.herts.ac.uk/artdes_research/ papers/wpades/ vol2/scrivenerfull.html ISSN
1466-4917
249 "Differences between Practice Based and Practice Led Research." Creativity and
Cognition Studios, (online resource), University of Technology Sydney (2010),
138
revolves around its making, its processes and its evaluation in the context of
knowledge acquisition. Linda Candy and Ernest Edmonds,250 confirm the
artefact’s central role, adding that there is always the need to consider the
frameworks that identify this flow of actions and ideas between the making and
the made. While this flow is always dependent upon each individual project,
artefacts nonetheless expose the variety of relationships between theory,
practice and evaluation. A danger that art can be marginalized as a ‘decorative
feature’251 of research can be avoided, when the themes around the making of
artefacts also opens up critical debates regarding the generation of knowledge
in other academic contexts. In this research project, the artefact may be the
conveyor of knowledge about Macular Dystrophy, but its making is also
inextricably linked to the processes of its making. How the artworks are made
– through the prism of low vision, trying to draw what can’t be seen, trying to
photograph what seems not to be there, or trying to paint as the brush moves
into the field of central vision loss and disappears – all these processes point to
the final outcome that ultimately becomes the artefact, the recorded and
‘durable thing,’ the object that both conveys knowledge about macular
dystrophy and is produced through it. The artefact becomes the site of, and
meets us at, the intersection of our inquiry into low vision – a common ground
for interdisciplinary comment and discussion, an object that can open up the
http://www.creativityandcognition.com/research/practice-based-
research/differences-between-practice-based-and-practice-led-research/
accessed 18 August 2012
250 Candy, Linda, and Ernest Edmonds. 2010. "The Role of the Artefact and Frameworks for
Practice-based Research." In The Routledge Companion to Research in the Arts, edited
by Michael Biggs, Henrik Karlsson and Stockholm in collaboration with Stiftelsen
Riksbankens Jubileumsfond. London and New York: Routledge, page 135
251 Sullivan, Graeme. 2010. Art Practice as Research: Inquiry in Visual Arts / Graeme Sullivan.
Thousand Oaks [Calif.] : Sage Publications, 2010. 2nd ed., page 57
139
‘inter subjective space,’252 between the experience of low vision and coming to
better understand it.
4.5 Embodied knowing and subjectivity
In her paper “From the ground up: encountering theory in the process of
practice led doctoral research”, Carole Gray253 reconfigures the art practice as
research model from a ‘balance’ between practice and theory, to one of
‘relationships’ where, through an interrogation of practice, new theoretical
orientations can highlight questions of ontology (what can be known), and
epistemology (our relationship to knowing and knowledge), enabling us to see
reality as a personal construction where the researcher is always immersed and
totally involved and where multiple perspectives are brought to bear on
research outcomes. What happens to notions of subjectivity and objectivity in
this regard? How does subjectivity move into the arena of legitimate
knowledge, or even be seen in the context of ‘quantifiable outcomes’?
As mentioned earlier in this chapter, coming to acquire knowledge can be seen

as a process, which has implications for art practice as research. The idea of
embodied knowing is essential to this process and for Mark Johnson this means
that one must cease to see knowledge as merely propositional and ‘out there’.
Thousand Oaks [Calif.]: Sage Publications, 2010. 2nd ed., 2010, page 40
253 Gray, Carole, “From the ground up: encountering theory in the process of practice-led
doctoral research,” Gray’s School of Art, Faculty of Design and Technology, The Robert
Gordon University, Aberdeen, Scotland,page2
https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&
uact=8&ved=0CCAQFjAA&url=http%3A%2F%2Fcarolegray.net%2FPapers%2520PDFs%
2FFromthegroundup.pdf&ei=sEU0VZf6BeHJmAW05IGwAw&usg=AFQjCNHtdR3uzHbP
wIWPGdZqMh074JjAbQ&sig2=D9sfX58MlUfk5CSD-GiXrg&bvm=bv.91071109,d.dGY
Accessed October 1, 2012. See also Gray, Carole, and Julian Malins. 2004. Visualizing
research. [electronic resource] : a guide to the research process in art and design:
Aldershot, Hants, England ; Burlington, VT : Ashgate, c2004. Bibliographies Handbooks
Non-fiction Computer File
140
For Johnson, embodied knowing (with the body, as the harbour of the senses
that experience the world) plays the central role. The value of an artwork lies in
the ways in which it qualitatively reveals the ‘meaning of experience and
imaginatively explores how the world is’.254 Notions of objective, fixed truth as
the only valid path to knowledge miss the depth, texture and ongoing change
in the world that embodied experience can bring to research. As mentioned
above, it is in the inter subjective (third)255 space, where notions of objectivity
and subjectivity have little relevance, that research finds the myriad
experiences, expressions, interpretations and contexts of meaning so enriching
to knowledge.
In this research project it is absolutely the subjective, embodied experience of

Macular Dystrophy that I am researching, attempting to make sense of the
experience, to articulate the experience in ways that can be relevant and
transferable.256 How can I convert the subjective experience of Macular
Dystrophy that my body carries into data and incorporate it objectively into this
research?
In the realm of qualitative research methodologies, auto ethnography is still an

emergent technique, positioned at the opposite end to ethnography, one of the
earliest forms in the qualitative lineage. The emic perspective (the insider’s
view) is contrasted with the etic (the outsider’s view) in ethnographic studies,
but for Michael Patton, the relationship between the observer and the
254 Johnson, Mark. "Embodied Knowing through Art." In Biggs, Michael, and Henrik
Karlsson. 2010. The Routledge Companion to Research in the Arts. [electronic resource],
EBL: Hoboken : Taylor & Francis Ltd, 2010. BookElectronic document, see page 147 and
149 in particular
255 See Sullivan, Graeme. Art Practice as Research: Inquiry in Visual Arts / Graeme Sullivan.
Thousand Oaks [Calif.] : Sage Publications, 2010, page 40
256 See also an editorial on the relationship between artwork, disease, medicine and social
change in Radley, A., and S. E. Bell. 2011. "Another way of knowing: art, disease and
illness experience." Health (London) 15 (3):219-22. doi: 10.1177/1363459310397972.
141
observed has been called into question at every level in the post-modern era,257
which most likely accounts for the rise of auto-ethnographic research.
Auto-ethnography uses the self and personal experience as the primary data
source, rather than studying the ‘exotic other’ for which ethnographic
techniques were first developed, attempting to locate the voice of the self in
the study context and within the larger world.258
For Morwenna Griffiths, the auto-ethnographic process may also be an inherent

part of the reflexive nature of art practice as research, heightening awareness
of the researcher’s own perspectives in the act of research – an ‘attempt at self-
consciousness about value positions…while at the same time acknowledging
the incompleteness of the attempt’,259 which sets this perspective apart from
autobiographical forms. But for Griffiths, the self is present in all stages of the
research process, to one extent or another, from focus, rationale, method, data
collection and analysis to presentation and dissemination of the resultant
research, calling into question the notion of neutrality in any research process.
If the phenomena of vision loss were a landscape, I would describe a journey

into its misty, shifting, soft focused hills full of pockets of ‘nothingness’, and I
would photograph, paint and draw what I saw there as a record of my journey.
An auto-ethnographic reading would equip me adequately with the tools
needed for this encounter.
Many of the approaches found in qualitative methodology can be applied to

this particular research project, underscoring the hybridity, inter-textuality,
trans-disciplinary and post-disciplinary nature of art practice as research. Some
257 Patton, Michael Quinn. Qualitative Research and Evaluation Methods. 3rd edition ed.:
Sage Publications, Thousand Oaks, London, New Delhi, 2002, page 84
258 Ibid., 88
259 Griffiths, Morwenna. "Research and the Self." In Biggs, Michael, and Henrik Karlsson.
2010. The Routledge Companion to Research in the Arts. [electronic resource], EBL:
Hoboken : Taylor & Francis Ltd, 2010. Book Electronic document., page 185
142
of these approaches include, as seen above, auto-ethnography, autobiography
and case study methods, and while each can contribute in varying ways, from
the types of questions asked, to the types of data collected and the analytic
approach that is taken, it is through the phenomenological framework that I feel
I reach the deepest levels of my inquiry into vision loss.
4.6 Art practice as research and macular degeneration
I cannot step out of the experience of low vision and make artwork.
I can never exchange my disease, or halt its processes and effects, for a different
set of eyes, or a different experience of the world.
The moment of making is always linked with this experience, and even if the
artwork is not about vision loss, it is always the product of an artist making art
through the prism of low vision.
Art practice as research highlights the relationship between the artist and the
artwork, and the idea that the artwork can be evidence of the research process,
but since the condition of my eyes is scientifically evident, it also heightens the
validity of the embodied, subjective experience in the creation of artwork as
data, legitimising the authentic voice of the subject, patient, and artist, in the
exploration of the research territory.
As Elizabeth Grierson and Laura Brearley note, while there is value in stating the
alternative methodological routes of art practice as research, in relation to
established modes of enquiry, it is through the selection of a particular
methodology that the researcher becomes a political voice.260 Choosing
Phenomenology means I am also choosing this as my world view, and
commenting on the nature of knowledge, knowing and existence, in the
260 Grierson, Elizabeth, and Laura Brearley. 2009. Creative arts research : narratives of
methodologies and practices, Educational futures : rethinking theory and practice: v. 35:
Rotterdam : Sense Publishers, c2009. Bibliographies Non-fiction., page 5
143
process. Somehow through the processes of researching, thinking and
reflecting I found that I was ‘thinking phenomenologically’ anyway in this
project – as if the methodology found me rather than me finding it. It may be
true that we can never remove ourselves from our own perspective
(consciousness), even though we may attempt to understand the experience of
someone or something else in the world, through the work of attention. Is it
possible then that art, focused and intent on conveying a particular subject, can
bring us closer to another perspective?
4.7 Phenomenology
In current contexts phenomenology can describe both a philosophical approach

and a method of research, where the experience of the phenomenon (from the
Greek meaning 'to show itself') is brought to light, or revealed, through
discourse (Greek Logos)261 so that, according to authors Richards and Morse,262
the essence of the phenomena being studied, can be elicited. Here, the lived,
embodied (existential) experience (temporal, spatial, corporeal and relational),
is critical to the phenomena being investigated, revealing, as Cora Marshall
notes,263 underlying structures of things through objective observation,
‘describing how things appear, letting the artworks speak for themselves.’264
261 See Heidegger’s Glossary of Terms in Being and Time by Roderick Munday, at
http://www.visual-memory.co.uk/b_resources/b_and_t_glossary.html#p accessed 7
Nov 2012
In combining these two etymological definitions, Heidegger can arrive at a preparatory

conception of phenomenology as follows: to let that which shows itself be seen from
itself in the very way in which it shows itself from itself.
263 Marshall, Cora. "A Research Design for Studio-Based Research in Art." Teaching Artist
Journal 8, no. 2 (2010): 77-87, page 82
264 Ibid., 83
144
In its philosophical context, phenomenology, first proposed by Edmund Husserl
(1859 - 1938), has had an enormous impact on twentieth century western
thinking, as it emphasised the relationship between consciousness and things
in the world (phenomena), in a way that broke the dominance of the mind-body
divide of Cartesian traditions. Heidegger, Gadamer, Sartre, Ricoeur, Merleau-
Ponty, Foucault, Derrida, Giorgi and van Manen among others further
developed phenomenology, causing it to undergo various shifts and
orientations in its development.
For Armadeo Giorgi, in order to properly conduct phenomenological research,

it is essential to first of all view its qualities as that which transcend empirical
scientific frameworks, positioning all, including scientific inquiry in the world,
from the point of an inescapable and unavoidable consciousness within which
all embodied-self-world-others knowledge and meaning comes.265 It is also
within consciousness, through the mechanism of intentionality, that all
intuition, experiences, and presences in the world manifest.
Giorgi identified three key interlocking phenomenological research steps: first,

the phenomenological reduction – which asks, what characteristics does this
phenomena have, how does this phenomena present itself to me exactly as it
presents itself to me; second, the step of description, which seeks to give
expression to the object in one’s consciousness precisely as it is presented, with
neither explanation, construction, nor interpretation; and third, the
requirement to search for essences,266 by a manner of natural, free imaginative
variation, moving and analysing parts of the phenomena to find those features
265 Giorgi, Amedeo, Journal of Phenomenological Psychology, 00472662, Fall97, Vol. 28,
Issue 2. 1997. "The theory, practice, and evaluation of the phenomenological method as
a qualitative research..." Journal of Phenomenological Psychology, 28 (2).
266 Ibid., 2
145
that cannot be removed, but rather, are essences purely attached to the
phenomena studied.267
For Max van Manen, phenomenological inquiry cannot be formalized into a

series of steps that comprise a method or prescriptive approach,268 since to do
so is to thwart the elusive presence of the experienced thing. However, both
empirical and reflective methods of inquiry are used to approach the study of
particular phenomena, enabling an access point to life’s lived dimensions in
order to reflect on the meanings these experiences carry with them.
It may be through the phenomenological activities that van Manen identifies:

drawing; entering; gazing; seeking; touching; and traversing, in an ‘attitude or
mood of wonder’269 that can then articulate the intimately lived experience of
vision loss.
Finding guidance within this philosophical and methodological approach, it is

possible to begin describing the experience of vision loss through the creation
of artwork, in order to, as Richards and Morse note, ‘transform the lived
experience into a textual expression of its essence,’270 a practice that parallels
the praxis – exegesis model, a method that heightens the visual awareness, and
seeks to find the essence of the thing observed, in visual form.
At the beginning of this research project, and with the desire to create the first
body of artworks around the subject of macular dystrophy, I began reflecting
on some of the ways it appeared to me in my field of vision. As the artworks
267 See also Sokolowski, Robert. 2000. Introduction to Phenomenology. 8th ed. New York:
Camridge University Press. Page 177
268 Max van Manen, Phenomenology Online http://www.phenomenologyonline.com

online methods and procedures, accessed November 2012
269 Ibid.
146
took shape, elements began to emerge, which I named ‘characteristics of the
void’. These aspects of macular dystrophy were clearly identifiable and distinct
from each other, yet also inter-connected with and inter-dependent on one
another. These elements became characteristics that include those of: absence;
destruction and rupture; the loss of edge; the softness or loss of focus; the
viewing from margins and peripheries; the fusing of figure and ground; the
notion of entropy and vision loss; the notion of erasure; palimpsest (as a re-
inscribing of the visual field); the perception of movement; vibration; pulsation;
the effect on scale; contrast; tone; and the psychological and physical effects
on the body as it experiences through the state of vision loss.
But these characteristics are not only inherent in the lived experience of
macular dystrophy; they are also characteristics familiar to the discipline of art.
How macular dystrophy disrupts, alters or heightens these various
characteristics was examined in this research project through five primary
studio methods: painting; drawing; printmaking; photography; and multi-
media.
While each medium carries with it its own history and discourse, how the
characteristics of macular dystrophy collided with or changed in relationship to
those media revealed a greater understanding of both the effect of vision loss
on the visual field, and also how these characteristics could best be expressed
through the various modes of making. In effect, I was evaluating the success of
each method of art making to answer the research question, while at the same
time exploring that question from every available angle of art making, in order
to articulate the experience of macular dystrophy as fully and faithfully as
possible.
My research approach in the studio was thus separated into two basic parts.
First, the artwork was inspired by its characteristic; and second, the artwork
was developed through a specific method of making.
147
4.8 Characteristics of the void
At this point I will give a brief description of some of the predominant

characteristics of vision loss, or, as I refer to them, the ‘characteristics of the
void’. (These characteristics are also discussed throughout this dissertation,
when they relate to a particular aspect of discussion.) I also give a brief
discussion on the nature of absence and erasure, as they were central themes
in my art making. Exploring them in art also led to some philosophical
considerations, which I also discuss below. I then move on to a brief outline of
the methods of art making which were employed in the research project. I also
consider some aspects of Jacques Derrida’s Memoirs of the blind: the self-
271
portrait and other ruins, as this pertains to the practice of art making,
notions of blindness, visuality and art, and in particular, my research project.
4.8.1 Absence
Absence is a major hallmark of my experience of central vision loss. Absence

can be due to the presence of scotomas, as seen in section 3.8 Scotoma, or it
can be due to other neurological disturbances. Due to my scotoma, objects that
fall directly into my blind spot at the centre of my visual field seem to
‘disappear’ into the area of the scotoma, seemingly without a trace. Anything
in this field of view becomes ‘invisible’.
4.8.2 Erasure
Erasure is closely aligned with the characteristic of absence, but erasure tends
to denote those moments when objects pop in and out of view, which often
occurs with a central scotoma, as one scans across a scene. Anything can be
erased, simply by looking directly at it.
271 Derrida, Jacques. 1993. Memoirs of the blind: the self-portrait and other ruins / Jacques
Derrida; translated by Pascale-Anne Brault and Michael Naas: Chicago: University of
Chicago Press, 1993. Non-fiction.
148
4.8.3 Destruction and rupture
Destruction and rupture are closely aligned with absence and erasure, because
these characteristics become evident if the object being viewed is both larger
than the scotoma, and heavily contrasted. The disruptive and destructive effect
of cellular damage to the macula, can impact on an otherwise calm scene.
4.8.4 Movement, vibration, pulsation
The characteristics of movement, vibration and pulsation are major symptoms

in my visual field. Perhaps surprisingly, they are always present in both the
central and peripheral fields. There are many aspects to these visual sensations
- in the area of the scotoma, there is continuous pulsation, with throbbing lights
that can change colour, and quality, while in the peripheral field, there seems
to be something more like ‘visual snow,’ little white rain drops or flakes, which
are clearly evident with good illumination, particularly if I look straight ahead
but move my awareness to my periphery. I am not sure if this is a result of micro
saccades (imperceptible small eye movements) or more damaged cells in the
outer areas of the retina.
4.8.5 Loss of edge, focus, margins
Because the central field is missing, things are viewed in the periphery, and are
therefore softly focused. A loss of edge also occurs as peripheral viewing
diminishes visual acuity. However, the boundary between the central field,
where the scotoma is evident, and the periphery, is also blurred, so it is difficult
to tell where one stops and the other starts. The transition is almost
imperceptible. There is also a constant awareness of having to view at the
margins of things, by utilizing eccentric viewing.
4.8.6 Metamorphopsia
Bending and smearing lines in the peripheral field become very apparent when
fatigue sets in. These shapes can change from jagged edges to blurred wavy
149
lines, and are very noticeable when reading on a computer screen. This
characteristic is closely aligned with physical and emotional states.
4.8.7 Palimpsest
Palimpsest is the notion of reinscribing the visual field. While the idea of
palimpsest arose as a result of the scraping away of text or images in old
manuscripts, in this instance I include palimpsest as a characteristic of my
macular dystrophy because of the function of cortical completion, or the filling-
in phenomenon. Very often, in the field of absence at the centre of my vision, I
find my brain trying to reinscribe the absent area with colours, lights, objects,
or patterns. This phenomenon is also described in other sections of this
dissertation.
4.8.8 Entropy and vision loss
Knowing that the cells of the macula are dead and dying, I am always aware that
I am seeing things through an entropic state, in which I am not only viewing the
destruction in my visual field, but the cellular debris that remains.
4.8.9 Contrast and tone
Contrast and tone are affected by macular dystrophy. If the tones are muted, it
is hard to discern figure from ground, whereas if contrast is greater, it is easier
to discern objects. In many ways contrast and tone are interrelated with my
perception of colour and colour intensity.
4.8.10 Colour
Curiously, colour does not play the role one would expect it to, given current
medical understandings of macular dystrophy, at least in my experience of it,
for it does not seem to have significantly diminished. Moreover, it plays into
the field of absence in interesting ways. For instance, I ‘see’ colour in the area
of absence as part of the cortical completion process, and I also see colours and
lights in the throbbing and pulsating area of the scotoma. Colour also confirms
150
the identification of objects in my visual field, and its intensity or lack thereof,
plays into the characteristics of contrast and tone as mentioned above.
4.8.11 A fusing of figure and ground
As edges and boundaries are lost, there is a sensation of things melting into one
another, giving the impression of a fusing of objects into their backgrounds.
4.8.12 Scale
The infinite variety of visual scenes one encounters day to day means that
different objects will appear to either disappear completely, or only partially,
depending on their relational size to the area of vision loss. This gives the
impression that the size of the scotoma is changing. Scale becomes an issue in
whether things are seen or not, very dangerous when crossing the road and an
oncoming car fits perfectly into the blind spot!
4.8.13 Light
Light plays a part in the symptoms of Stargardt’s Disease, in two ways.

Photophobia causes sensitivity to light, while glare is a problem that means I
am often wearing sunglasses to counter the effect. Furthermore, light levels can
affect how much colour and contrast can be detected. There is always a struggle
between enough light, not enough or too much.
4.8.14 Physical, environmental and psychological factors
The influence of physical effects on the body can have a dramatic effect on what
is being viewed. Metamorphopsia seems to be more apparent when tired, while
environmental factors also play a vital role in what is being perceived in the
visual field. Psychological states also play a large part, particularly in the filling-
in phenomenon, or where awareness or thoughts of things make it seem as if
though they are affecting or influencing what is being perceived.
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4.8.15 Facelessness and wordlessness
I have added the characteristics of facelessness and wordlessness since both

these perceptual qualities are constant features in the world of macular
dystrophy. Facelessness occurs because it is very difficult to see other people’s
faces, or to recognise loved ones or friends at a distance. The face often fits
perfectly into the scotoma. Wordlessness is also something to be contended
with on a daily basis. The printed page is almost inaccessible, even with
magnifiers. These two characteristics have been explored in the artworks and
they are also discussed in the next chapter.
4.9 Philosophy and vision loss
4.9.1 Phenomenological aspects of absence
One of the primary aspects of macular dystrophy is its ability to render things
invisible. The notion of absence, closely related to the idea of invisibility, has
played a major part in this research enquiry so far. As became evident in the
literature review, representations of macular dystrophy in medical journals and
the wider media often show the phenomena of central vision loss to be a large
black spot at the centre of vision. Yet the lived experience of macular dystrophy,
from my perspective, is never a sensation of something ‘out there’ blocking the
view in the foreground. It is almost always experienced as a constant absence
of vision, or more specifically, an experience of the constant presence of
absence.
How absence can be portrayed, utilizing the methods of art, presents both an
obstacle and an opportunity. While I have been exploring this theme through
both photography and drawing, I have learned more about the ontological and
epistemological nature of absence, the ability of art to express that concept,
and also the profound ways it connects with the experience of macular
dystrophy.
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What is absence? How can this quality of not being visible be articulated in the
visual language of art? Exploring its traits through visual media brought many
questions about what kind of phenomenon absence actually is, and how it is
understood and perceived by the mind. Many of these questions are explored
through phenomenological readings on the nature of absence. I have found the
writing of Robert Sokolowski272 to be particularly clear and helpful on this
subject, illuminating my understanding of how this characteristic presents itself
in the experience of macular dystrophy. While there will be a discussion of some
phenomenological approaches to the notion of absence below, there are also
further discussions in the following chapter.
In phenomenological terms, when things present themselves, their absence is

also implied or inherent. For instance, if a cube is observed from one angle and
one perspective, the other sides of the cube cannot be seen. But the viewer is
still aware of the presence of those absent sides of the cube not visible to the
eye. In this way the viewer can perceive or ‘see’ more than what the eye sees.
The viewer can walk around the cube and can explore all its sides – perception
is dynamic and what could have potentially been perceived now becomes
actually seen, and what was actually perceived slips into absence. Through
looking, perceiving and observing, the cube has many aspects and profiles, and
these things change according to the perceivers’ perspective.
In an objective sense, the perception of the cube is understood as a blend made

up of both absence and presence – the sides that are visible to the perceiver,
and those that are not. Therefore, the thing being seen is both a mixture of
something present and something absent.
272 Sokolowski, Robert. Introduction to Phenomenology. 8th ed. New York: Cambridge
University Press, 2000, kindle edition
153
In this way, says Sokolowski, all experience involves a blend of both presence
and absence. They are facets of the same thing. This can be the case for visual
perception, and for language, there is in both cases both the fulfilled aspect and
an empty intending. “These other sides (of the cube) are given, but given
precisely as absent. They too are part of what I experience”.273,274
However, explains Sokolowski, there are different types of absence, as can be

shown in an analogy of a football match; we know that the game will happen,
for example, on Saturday. At this point the game is absent, but it is full of
intention, we are intending it. On Saturday, as we begin to watch the game, the
intent is being gradually fulfilled and presented to us. The game is present to
us. When the event is over, we remember the game in the absence and that is
a different kind of absence - it is one presented to memory. Absence can exist
in memory, both long and short, and in imagination. Sokolowski sees that much
of the discourse in philosophy has neglected a close examination of absence,
“… we tend to think that everything we are aware of must be actually

present to us… we shy away from absence even though it is all around us
and preoccupies us all the time… philosophers have tended to overlook
the radical role of absence in human consciousness.”275
Absence and its qualities were ever-present in my art making, and this is
discussed in the following chapter in relation to photography and animation.
While utilising both these types of art making, I was also forced to contemplate
University Press, 2000, kindle edition
274 There are three structural forms in the analysis done in phenomenology. The three
forms are (A) the structure of parts and wholes (B) the structure of identity in a manifold
(aspects) and (c) the structure of presences and absences.
University Press, 2000, in the section Presence and Absence and the Identity between
them, in chapter 3
154
the characteristic of erasure, and how this might have been differentiated from
the characteristics of absence in vision loss.
4.9.2 Erasure
The characteristic of erasure is also at play in the visual manifestations of

macular dystrophy, as things disappear in the central field. How is the
characteristic of erasure different from the characteristic of absence? Is it
inherently intertwined with the notion of movement? Erasure presupposes that
something was there to begin with. I saw the dog walking on the footpath in
front of me, and suddenly she was rubbed away, re-appearing a few seconds
later in the periphery. If the notion of movement is connected with erasure,
then this characteristic may be well served by a study through the art methods
of animation. Is it possible that if absence has qualities of continuity and
endurance in the visual field, and in perception, then erasure is a ‘taking away’,
a kind of characteristic that says something about the way it is linked with time,
leaving just a trace of having been? The red tomato sits on the kitchen counter,
but now that I look at it, it is gone, erased by the scotoma, and leaving just a
trace of red pigment in the fog. This idea is explored in the artwork titled 'Case
of the missing tomato.'276
276 Erasure can be deconstructive, revealing new meanings in the process of art making.
This concept is explored in an essay by the artist Richard Galpin, who uses erasure of
text in his work. See Galpin, Richard. 1998. "Erasure in Art: Destruction, Deconstruction
and Palimpsest." http://www.richardgalpin.co.uk/archive/erasure.htm Website:
http://www.richardgalpin.co.uk
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Illustration 20: The case of the missing tomato
4.9.3 Derrida, art practice and blindness
The idea of self-reflection and art practice through the framework of low vision
or blindness inevitably draws one to consider Jacques Derrida’s text, Memoirs
of the blind: the self-portrait and other ruins.277The text was originally a
catalogue of an exhibition held at the Louvre in 1990- 1991,278 in which Derrida
drew together works, primarily drawings, from the archives of the museum,
gathered around the theme of blindness.
277 Derrida, Jacques. 1993. Memoirs of the blind : the self-portrait and other ruins / Jacques
Derrida ; translated by Pascale-Anne Brault and Michael Naas: Chicago : University of
278 Memoirs of the Blind: The Self-Portrait and Other Ruins is the accompanying catalogue
to an exhibition held at the Louvre Museum, Paris, during the period of 1990-1991.
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By making blindness his central theme, particularly in so famous an institution
devoted to the act of seeing as the Louvre, Derrida invites philosophical
discourse on drawing, art, visuality, memory and representation.
Why does Derrida choose blindness to discuss these issues of vision? For
Derrida, the ‘instructive spectacle’ of the blind man reveals him to be, “…an
archivist of visuality…. someone who takes away sight in order finally to show
or allow seeing and to bear witness to the light.”279⁠
In this sense, the draughtsman (or ‘the artist’), is also an archivist of visuality,
and is also blind, essentially because when the draughtsman draws with their
fingers and with their minds, they redirect their seeing internally, losing sight
of the object they are seeing.
Draughtsmen are either looking at the object that they wish to represent, which
means they cannot see the paper which they are drawing on, or they are
looking at the drawing they are creating, and therefore are unable to see what
it is they are trying to represent.
There is an inherent logic in this analysis of the steps from the seeing of an
object to its representation. Because artists must take these steps in order to
produce a drawing, they also, step by step, diminish the truth of the object of
their viewing, until it comes to fruition on the paper. Thus, no drawing is ever a
true representation of the thing itself - it is always mediated by the mind and
by memory. In taking these inescapable actions (since the eyes cannot be in
two places at once), artists must use memory to translate what it is they are
seeing, and by using memory, they have moved away from the actual object of
their viewing, of what it is they are looking at – hence, they have begun a
process of ruin.
Chicago Press, 1993. Non-fiction, page 20
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In this way, all drawing is the product of blindness, and is therefore, the
representation of blindness created by the blind. Art, ruin, seeing, memory and
blindness are linked.
Derrida senses that the processes of writing without seeing, are the same as
drawing without seeing, since the eyes can be said to be fixed on something
other than the letters on the page, or the lines on the paper. Blindness occurs
in this instance because both the eye and the attention of the author or artist,
are elsewhere, focused on intent concentration of the mind. Thus, the hand
takes over as consciousness is directed away from the functions of vision. What
happens when one writes (or draws) without seeing?
“A hand of the blind ventures forth alone or disconnected, in a poorly

delimited space; it feels its way, it gropes, it caresses as much as it
inscribes, trusting in the memory of signs and supplementing sight.” 280
Thus seeing, touching, moving, hearing, and understanding are all coordinated
in this action:
“When …I write (draw)…. without seeing,…. with my eyes glued

elsewhere, a schema already comes to life in my memory. At once virtual,
potential, and dynamic this graphic crosses all the borders separating the
senses, its being-in-potential at once visual and auditory, mobile and
tactile.” 281
158
Derrida shows us the relationship between blindness, touching, and art making:
“If to draw a blind man is first of all to show hands, it is in order to draw
attention to what one draws with the help of that which one draws).282
⁠
James Elkins carries this idea further to show the inherent blindness of all art-
making, and that the dynamics of touch, so much the domain of blindness, is
deeply bound in the art making process:283
⁠ “…drawings are blind and they are
about blindness because they deeply involve the body.”⁠284 Thus, the weight of
the (blind) pencil upon the field of blank paper is caught in a physical
engagement with the blind hand at work:
“Drawing is strongly tactile, both in the way it is made and in the way it is
seen…both making and looking are strongly tactile, bodily experiences,
and to the extent that drawing pertains to touch, it loses contact with
vision.”285
In other texts, Derrida has explored the idea of the trace in drawing, which can
be described as an intersecting cut in space. Memoirs of the blind explores the
space partitioned in the cut between the spaces on both sides of the picture
plane.
However, as Mathew Ancell discusses,286 Derrida’s deconstruction of drawing,

shows that the ‘logics at work in drawing touch on the origin of art itself’, and
that two epistemological discourses are being explored in Memoirs – the
282 Ibid., 4 and 5
283 Elkins, James. 1996. The Object Stares Back: On the Nature of Seeing. New York, NY:
Simon & Shuster, page 234
284 Ibid., 233
285 Elkins, James. 1996. The Object Stares Back: On the Nature of Seeing. New York, NY:
Simon & Shuster, page 227
286 Ancell, Matthew. 2014. "Credo Ergo Sum: Faith, Blindness, and Pictorial Logic in
Derrida's Memoirs of the Blind." Oxford Art Journal 37 (2):193-210. Page 198 - 199
159
(rational) gaze, (and the perspectival system), and the idea of faith and
revelation. As the systems of perspective fails, faith takes over, thus “Derrida
invokes a new vocabulary of belief …. that explains the operations of drawing
as an act of faith and the operations of faith as the picturing of the world”. 287
Drawing, faith and blindness operate in the same spheres.
For Georgina Kleege, such discourses around the agency of blindness and the
artistic process are inherently suspect. The artist is portrayed as an unthinking
medium for a muse, without agency or intentionality of his own. The artist is
understood to lack the mundane sight of ordinary people, and to be blessed
instead with a special other worldly vision that gives him access to the true
essence of things, in a way similar to that of the blind man, who also seems to
possess heightened powers of insight and inner vision:
“On a linear spectrum of human visual experience, the artist and the
blind man occupy the opposite endpoints. When the spectrum is bent
into a circle, the two endpoints converge, or at least engage in
conversation.” 288
While Memoirs of the blind explores notions of visuality, and is a critique of

linear perspective, monocular and binocular vision and the multiplicity of
viewing, the rationalization of space, and systems of western thought, it also
points to the embodied nature of perception, and the fragmentation of
subjectivity.289 Derrida includes the work ‘Christ Healing a Blind Man’ (after
Lucas van Leyden)(refer Illustration 21), in the Louvre exhibition, which shows
a blind man presenting his own blindness to Christ
287 Ibid., 199
288 Kleege, Georgina. 2010. "Dialogues with the Blind: Literary Depictions of Blindness and
Visual Art." Journal of Literary & Cultural Disability Studies (1):1, page 2 and 3
289 See Ancell, Matthew. 2014. "Credo Ergo Sum: Faith, Blindness, and Pictorial Logic in
Derrida's Memoirs of the Blind." Oxford Art Journal 37 (2):193-210.
160
“… as if a blind man were doing his own portrait – the self portrait of a
blind man telling his own story in the first person – he will have indicated,
localized, and circumscribed his blindness… a sort of obscure self –
showing, nocturnal yet assured … the mirror without image.” 290⁠
Illustration 21: After Lucas van Leyden, Christ Healing a Blind Man, Louvre Museum
Chicago Press, 1993. Non-fiction, page 10 and 12
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Following Derrida’s line of thought, it can be said that the self-portrait is “…. the
very paradigm of this moment at which the artist is blind.”291 The lineage
between art making, blindness and perception is strong: a fundamental
question could be expressed as follows: “…must we arrive at a theory of artistic
activity based on a theory of perception or, on the contrary, arrive at a theory
of perception based on a theory of artistic activity?”292 Could it be, because an
object makes us blind to aspects of itself, in order for us to perceive other
aspects of itself (that is, the qualities it brings to our minds and our perceptions
of it), that Derrida asks us, the artist and the spectator who sees our work, to
see seeing in another way?
The implications of art making, blindness and perception are inseparable in this
research project. Mediations of the mind and memory are always at play. There
is no escaping these problems, and as a result, the artworks are part of the
imperfect processes of seeing. It is my representation of blindness, created by
both the blindness involved in the act of translating my seeing, and my actual
blindness caused by macular dystrophy.
4.10 Activities of daily living
As discussed in section 2.8 Assessing quality of life and the impact of vision loss,
activities of daily living can include the entire range of activities from eating,
travelling, reading and everything in between. It may be difficult to imagine
how operating a microwave oven, or paying for groceries by keying in a PIN
number would add to the stress of daily life, but for those with vision
impairment small numbers on dimly lit electronic panels add additional
291 Escoubas, Eliane. 2006. "Derrida and the Truth of Drawing: Another Copernican
Revolution?" Research in Phenomenology 36:201-214. doi:
10.1163/156916406779165827.
292 Escoubas, Eliane. 2006. "Derrida and the Truth of Drawing: Another Copernican
Revolution?" Research in Phenomenology 36:201-214. doi:
10.1163/156916406779165827, page 213
162
challenges to daily life. There are myriad problems that arise in a day as a result
of vision loss, and the artworks the researcher created for this research project
are only a few examples of the activities of daily living affected by macular
degeneration.
It should be noted is that I am placing the scotoma and its symptoms within the
context of the everyday, which is different to the approach Lee Allen took in
describing the appearance of his scotoma. These seem to be portraits in their
own right, and are not placed within the context of the everyday. Again this is
also different to the way Paul Hackett conducted his research by creating
perceptual landscapes. My work correlates a little more with Munch’s
approach, in that it explores the everyday position of the scotoma in real life,
although it would have been so valuable if Munch had produced more works in
this regard, but he was probably in no position to do so, given the tenuous
condition of his eye, and doctors’ orders for complete rest.
4.11 Painting
In this research project painting was explored for the way it can capture fleeting
moments in time as perceived by the eye. Light, tone, and colour are all affected
by macular dystrophy. Oil paint pigments are subtle yet powerful, and able to
capture the nuanced effects of these characteristics on the field of vision. The
interplay between what is perceived by the eye, the way it is processed through
perception, and relayed onto the canvas through brushwork, pigment, and
glazes in a cycle of observing, reflecting, and making, was a powerful tool for
this investigation. Painting captures the embodied experience of seeing and the
immediacy of translating that embodied experience onto canvas, while
brushwork conveys the rhythm of movement in what is observed, and how it is
felt in the body. The ability to scrape paint away represents both the symbolic
and the actual effect of macular dystrophy on the field of vision. While it has
been enormously difficult to paint from real life given the extent of vision loss,
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I have still used this medium in other ways to create works that explore macular
dystrophy.
4.12 Drawing
Like painting, drawing can capture the embodied experience of seeing, but in
this research project it is also the materiality of paper that became so
fascinating.
Drawings were made at the beginning stages of the research project.

Observations were made about the way the eye adapted to areas of non –
seeing, utilizing peripheral vision to complete the works. I noticed it was also
difficult to draw in a realistic way as I could not measure the distance between
things. For example, if I was drawing the bridge of a nose on a face, I could not
find my line of reference to place the lines correctly. Prior to the onset of
Macular Degeneration, I could use my eyes to measure the distance between
the corner of the eye and where I would begin drawing the bridge of the nose.
Now I have to estimate where the corner of the eye is, imagine it as a reference
point, and then use my peripheral vision to draw the nasal bridge.
While drawing has revealed a great deal about the processes of adapting to
vision loss, and the strategies the mind makes to compensate, it is the fragile
qualities of paper that carry metaphors of vision loss so beautifully. Tearing,
rubbing, and scratching away at the surface on which an image is drawn
expresses the characteristics of destruction and rupture that are brought to
bear on both the visual field, and the level of cellular degeneration.
4.13 Printmaking
There is a type of printmaking called monotype, which was explored in the

studio. This is a technique in which the artist paints with ink or other pigment,
directly onto a plate that is then put through the printing press. It is immediate
and fluid in its processes as it can incorporate painting as well as printmaking.
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In this research project, I envisaged that the idea of painting onto a smooth
surface and wiping away parts of the image would echo the characteristic of
erasure which are so much a part of my experience of macular dystrophy.
However, during the course of my research, I discovered other monotype
processes of printmaking, which are discussed in the next chapter.
4.14 Photography
Photography was used extensively in this research project, as a way to gather

data and generate artworks. Photographs were taken of everyday situations,
almost in documentary style, as I explored the lived experience of macular
dystrophy. These photographs were altered through the software program
Photoshop, to mimic the effects of the disease. In the process of attempting to
alter the photographs many discoveries were made. The complex and dynamic
nature of the disease became evident as I followed the processes required to
make those images as accurate as possible, and sometimes none of the tools
available on the Photoshop palette could completely capture the effects upon
the visual field as I experienced them.
However, I was aware that the camera is a mechanical instrument and not a
living being with an eye disease.293 It cannot capture the embodied, lived
experience of macular dystrophy in the way that painting or drawing can. It was
often used like an ethnographer’s tool in this project, like a recording device,
taking field notes for me to analyse at a later stage of the research.
293 See also Costello, Diarmuid. 2012. "The Question Concerning Photography." The Journal
of Aesthetics and Art Criticism.
165
4.15 Animation
The use of animation in this research project came with the hope that it could
capture the characteristics of movement, vibration and pulsation, aspects of the
void that are always present, and sometimes quite pronounced.
In this research project I was seeking to convey the lived experience of macular
dystrophy as completely and faithfully as I could, and this required the use of
animation tools such as Adobe After Effects. The idea of absence could also be
expressed through the use of animation, as objects often wove in and out of
the scotoma creating a visual ‘riddle’. It was these types of encounters with
vision loss that I was aiming to bring into the research discussion.
By cycling each characteristic of macular dystrophy through the five processes

of art making, a substantial body of work began to emerge. These art works
were then juxtaposed with other art works within the same characteristic, or
compared and contrasted to other types of artworks classified under other
characteristics, so that a visual dialogue, centring on the effects of macular
dystrophy was initiated.
166
take a
characteristic of
the void
find differences/
test against
similarities test against
other works
between other
within same
characteristics of characteristics of
characteristic
macular the void
group
dystrophy
test against
other
charcteristics
within the same
medium
Figure 5: Schema of research structure
Bubble structure showing cycle of characteristics in methods of making
The diagram above shows the structure of the research project. The Table 1
(below) lists characteristics of the void and the methods of art making that were
used to explore them.
167
Paired Methods of Art
Characteristics
With Making
absence
erasure
destruction
rupture
movement
pulsation
loss of edge
metamorphopsia
painting
palimpsest
drawing
entropy
çè
multimedia
contrast/tome
printmaking
colour
photography
figure/ground
scale
light
physical
environment
psychological
states
facelessness
wordlessness
Table 1: Characteristics of Macular Dystrophy and art making methods
168
Below is an example of a characteristic of Macular Dystrophy (absence) and the
methods of art making employed in this project:
ABSENCE
animation drawing
photography painting
printmaking
Figure 6: Example of characteristic of macular dystrophy and processes of art making
4.16 Doing research with low vision
Those with vision loss who are studying at a tertiary level will understand some
of the difficulties I am discussing below – namely, how to go about doing
research with central vision loss.
In this particular project, there were two major aspects in regard to vision loss.
The first was how I went about making artwork (and even how I could
accurately see the artwork I had made), and the second was the reading and
writing aspect of doing the research.
As I have discussed in other areas of this dissertation, problems arose during

the making of artwork as a result of my eyesight. For a start, I over-estimated
the capacity of my remaining vision, launching into painting projects only to
169
realise I really could not see what I was looking at. And then there was the
problem of finding the right patch of paint on the easel. I often ended up
loading the brush with the wrong colour, because I was looking up to see what
I was looking at, and then looking down to find the patch of oil paint, and then
painting what it was I was looking at, which all became exhausting and
confusing. Because I was using peripheral vision to and fro, from the scene in
front of me, to the palette, and then to the two-dimensional plane of the
canvas, I often lost my place in this process. When it came to drawing, I could
not see where I was placing my pencil. As previously discussed, drawing
requires one to be able to use both central and peripheral vision when drawing
something like a face. You need to know where you are placing your pencil and
its distance from another aspect such as the lines that you are drawing. For
example, if you are drawing the corner of an eye you need to see the distance
between the corner of the eye and the bridge of the nose so that you can
accurately put your pencil where it needs to be in terms of relative distances.
But with central vision loss I was often putting my pencil into the field of the
scotoma and only therefore being able to see the bridge of the nose in my
peripheral vision. I was literally drawing in the blind spot, and then I had to shift
my peripheral vision over to where I was trying to draw.
One of the issues I was often asked about was how did I know that the artwork
looked the way I intended it to if I could not see properly. A danger was that I
might think the artwork looked exactly how I saw it because I was looking at
the work through the prism of central vision loss anyway. In other words, the
work looked blurry and blotchy even if it wasn’t, because I was looking at it
through my very blurry, blotchy vision. But because I was aware of this I used
my peripheral vision to check that it looked exactly the way I needed it to, both
from my own point of view and from the point to view of those with good
vision.
As discussed in another section, the camera became a tool of choice because it

enabled me to capture a moment in time that I could then work on in terms of
making it look the way I needed it to. I could then use the camera and the
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photograph as a point of departure. Another tool was the computer and image
manipulation software. On the big screen I could blow the images up to a large
size and I could see details that I would not have otherwise been able to see.
I am of course in a rather unique position in that I cannot take out my unhealthy

eyes to make the artwork. I am always working through the prism of central
vision loss, so the work is always a result and product of that vision. At this point
in time I still have enough residual vision to be able to continue making art work
with the aid of the camera and the computer, or if the subject matter requires
it, working at a larger scale on canvas or paper with props and aids.294
At the beginning of this research project I was still able to read printed material
using strong magnifiers, and pressing my nose against the page. It was slow
going but it could be done. By the end of this research project, even the task of
reading with magnifiers was proving almost impossible. Instead, much of my
reading material was downloaded from the library website, and I used text to
speech software where ever possible to enable me to read articles without too
much visual exhaustion. I also relied heavily on downloading books onto
reading apps, and enlarging the text so that I could quickly read the material
required. As a result, many of the bibliographic sources were derived from
electronic books and electronic journals. I also explored the Internet, utilising
resources that enabled me to watch lectures and presentations by scientists,
psychologists, philosophers or eye specialists. When typing, as I am doing now,
I used dictation software to enable me to type without relying too heavily on
the keyboard, which is very difficult to see. Many of my vision-compensation
strategies have been developed to enable me to gain access to reading
material, without causing eyestrain. However, not all the books I wish I could
294 Sargy Mann is a British painter who has been without vision for more than two decades.
Mann, a successful painter, uses methods including blue tack to mark positions on the
canvas, props, and memory to help him produce works on canvas. See a BBC interview
here: http://www.bbc.com/news/magazine-29741908
last accessed 12 June 2015
171
have read were available electronically, and sometimes even an electronic
document did not have adequately functioning text-to-speech software.
It would not have been possible to do this research if I had not used my large
iMac with its built-in text to speech and dictation software, or my iPad, which
has become indispensable as a reading tool for reading electronic documents
and books.
In this chapter various aspects of methodology as it relates to studio based

creative art research were discussed, also focusing on how these aspects
related to my research project. Conceptual and philosophical frameworks work
considered, including how art work can be viewed as data, how triangulation
and trustworthiness relate to the production of knowledge, and some of the
difficulties inherent in trying to describe vision loss through the obstacles of
vision loss itself. I also explained how I constructed my research project, dividing
aspects of vision loss into various characteristics, which I titled ‘characteristics
of the void’, and how I paired these characteristics with the various methods of
art production. I noted these characteristics, and any philosophical questions
they raised, while also describing methods of art making used in the project,
and examining any philosophical aspects to them.
I also included a brief discussion on the way I went about conducting the
research, both in terms of art making and researching texts, through the prism
of macular dystrophy.
172
5 Expanding on methodology issues
5.1 Introduction to the chapter
In the previous chapter, some of the issues that surround art practice as
research were discussed, including; aspects of qualitative research; the
structure and design of this research project in fulfilling its aim; and answering
the research question, “What does central vision loss look like?” Various
characteristics apparent to the lived experience of central vision loss were cited,
and there was a brief discussion of the artistic methods that were used to
explore these characteristics.
In this chapter there will be a discussion of the findings of pairing and exploring
some of these characteristics with methods of art production. There will be a
review of the artworks produced and the methods used to produce them, in
light of the characteristics of macular dystrophy. Some of the methods of art
production worked, while others did not convey the experience of vision loss
as effectively as I had hoped. I have outlined these issues below, ending with a
discussion of the ultimate choices I made to produce the final works, and the
reasons behind this choice.
5.2 Photographing the void
The project began in 2012 with an exploration of the characteristics of the void,
using photography. As discussed above, ideas were drawn from daily life –
travelling, being with friends and family, reading, making food, and sometimes,
just photographing a moment where the visual symptoms intruded into my
thoughts, making themselves suddenly very visible.
One of the earliest works was Children on the Hammock. It was a perfect photo
opportunity – four happy, laughing children on the hammock, in the summer
sun, eating lollypops. But it was a peculiar moment; I just could not see their
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smiling faces pointing towards me, only their feet on the grass. The glare made
the photophobia worse, and the filling-in phenomenon made me think I was
seeing only garden where their faces should have been. It seemed that the
children were gone, but had left their feet behind.
Illustration 22: Children on the hammock – unaltered photograph
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illustration 23: Children on the Hammock
It was only when I saw the photograph on the large computer screen, that I was
able to see the children’s faces and their expressions. The camera captured a
moment that I could not see. When I show this image, I present the moment as
the camera saw it, and then again as I saw it on that day, altered with
Photoshop. In this way, the two images present a gap between what could be
seen with normal vision, and what is seen through the filter of Stargardt’s
Disease.
In another image, the head of the dog is gone. I know she is looking up at me,
but what is fascinating is that I see only the end of her body, and the shadow
that her head is casting. Her head is gone, but its shadow is not, which seems
to amplify the quality of absence. Again, the filling in phenomena causes me to
think that I am seeing the tiles on the floor instead of her head, just as I saw the
garden instead of the children.
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Illustration 24: Lizzie's missing head
A third example of the filling-in phenomenon can be demonstrated very clearly

in the work, Seven Crackers on a Red Board. In this work I had been preparing
some snacks for my daughters, only to discover that when I looked down at the
biscuits one of them was missing, the area where the seventh cracker should
have been was completely filled in by the red background. In a way, the void of
vision loss is like an empty glass which is filled by the context within which it
exists, in this case it was like red liquid pouring into an empty glass.295
295 Pessoa, Luiz, and Peter De Weerd. 2003. Filling-in. [electronic resource] : from
Press, 2003. Bibliographies Non-fiction Computer File, chapter 6
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Illustration 25: Seven crackers on a red board
5.3 Photography and absence
Working with photography made me think about the camera as a tool for the
low vision artist (as discussed in section 3.5.4 Working artists with low vision),
and how the camera sees the world as opposed to how a human does, and
finally how photographs seem well placed to elicit the experience of absence in
central vision loss.
While the camera can be an exceptional tool in regard to describing the very
real experience of absence, artist David Hockney disputes the idea of the truth
a camera is assumed to bring to our world-view, particularly with the advent of
the digital age and photographic manipulation. Hockney believes photographs
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may bring us one way of seeing, but it is painting that brings understanding - a
truth he sees evident in the war-inspired works of Munch, Goya and Picasso.296
There are complex issues between the mediums of painting, photography, and
the digitally manipulated image. The overriding distinction between these
three types of image production may lie in the difference between the ways
these images are produced.
For example, a painter may produce a work from imagination or, as Hockney
says, from understanding, whereas a photographer can only point to something
out there in the visual field, only ever capturing the reality of things that have
existed in the world, never creating them like the painter. With digital
manipulation however, these approaches become blurred. As a result, we can
no longer depend on the truth of the photograph, and the notion of the
impartial camera, standing in for the displaced witness, has gone.297,298
Yet, photography has managed to bring truth to the lived experience of macular
dystrophy through the manipulation of the digital image. Ironically,
manipulating the truth so often associated with the photograph brought a
deeper truth.
Trying to describe the absence of vision at the centre of my visual field was a
challenge, but the stillness of photographs seemed to correspond with the
quality of absence, and strangely enough, it was while exploring animation that
296 See an interview with Hockney on how cameras lie: Jones, Jonathan. 2004. "David
Hockney: We can't trust Photographs : Disposable Cameras." The Guardian, 4 March
2004, 1-5. Accessed 18 March 2012.
http://www.theguardian.com/artanddesign/2004/mar/04/photography
297 Mitchell, William J. 1992. The reconfigured eye: visual truth in the post-photographic
era: Cambridge, Mass: MIT Press, c1992. Bibliographies Non-fiction.
298 Galassi, Peter. 1981. Before photography: painting and the invention of photography:
New York: Museum of Modern Art; Boston : Distributed by New York Graphic Society,
c1981. Bibliographies Catalogues Non-fiction.
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I realized absence and photography were better suited to one another. I explain
this in the section below.
5.4 Animating the void
Producing animations taught me some surprising things about the nature of

central vision loss and the act of seeing. I was trying to describe the experience
of macular degeneration in real life, in particular trying to show how the
qualities of absence or erasure dominate my visual perceptions.
There is a difference between these two qualities, and they are discussed in the
previous chapter. Sometimes absence occurs, when an element in the visual
field appears to be gone, even though one knows that the object is there. I term
this the ‘presence of absence’, and because absence seems to occur in stillness,
photography is a medium that lends itself to making this quality evident.
With the perception of erasure, it is as if though an element in the visual field

is suddenly erased from view, as if though magically veiled by an invisible cloak,
only to reappear in the visual field somewhere else. Because the element of
time seems to be involved in this characteristic of my vision loss, animation
seems to be well suited to revealing its qualities.
Very often on my walks with the family dog, I would observe how my vision loss
caused her to disappear and reappear again, as she went onto the grass or
would trot ahead of me on the pavement. It was amazing to see how she would
disappear into the scotoma and then emerge somewhere else. I was
alternatively witnessing absence or erasure, depending on her movements.
If she vanished into the field of the scotoma, I would be experiencing erasure,
but at other times, when she stopped and fell silent, sniffing at something for
quite some time, a perception of absence would become apparent.
I tried to capture this, by using Photoshop as my software tool of choice, rather

than Adobe After Effects, as I felt there was more freedom to paint over the
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missing field, although this was a laborious task, as opposed to some of the
automated features of After Effects.
I began editing each frame of footage, observing how the filling in process
would either create a grey colour over the scotoma, when she was on the
pavement, or a green colour when she was on the grass. The filling in process
seemed complete and absolute, a total erasure of the dog occurred, even
though she would be considered ‘high contrast’ black and white, in visual terms.
The filling in process seemed powerful and absolute in its ability to eradicate
anything at the centre of my visual field. I now know that the completion
phenomena - the filling-in process, is affected not only by the size of an object,
or tonal contrast, but also by distance.
illustration 26: Stills from an animation, walking Lizzie, through the void
However, the sense of absence or erasure that I was able to convey using
animation was not enough. Over and above this filling-in is also a pulsation, or
throbbing sensation, often appearing like a faint orange ring that overlays the
scotoma. The appearance of this throbbing orange ring depends on different
light conditions, and on this occasion, in bright daylight, it also played a part in
my visual perceptions. The appearance of this throbbing ring can be described
like a persistent after image of the sun, after having entered a dark room. I
began drawing this visual effect, digitally composing ‘dark orange suns’ with
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flares emanating outwards, much like the photographs of solar flares observed
from space. I overlaid these faint orange rings onto the field of absence in the
animation, and it was a close rendition of the visual experiences I had on that
afternoon.
While walking often proved a good source of ideas for artworks, the topic of
transportation is even more rich a source when it comes to describing the
effects of vision loss in everyday life.
In Melbourne, one of the modes of transport is the tram, a vehicle described in

public safety awareness campaigns as a ‘rhinoceros on a skateboard’.
It is a vehicle that those with low vision need to be very wary of.
I was standing in the middle of one of our most famous boulevards, St Kilda
Road. One stands in the middle of this road with traffic on either side, waiting
for the tram to approach, in the middle of the carriageway. It is a disconcerting
sensation to have central vision loss and see cars suddenly appear right next to
you as they come shooting out from the borders of the scotoma. On a day like
this, I was filming as the tram approached, and it was very difficult to discern
the tram in the distance.
To relate this unnerving experience, I again chose Photoshop, and I began

painting each frame as the way I saw it on that day.
Again, this is a laborious task, and very different to using After Effects where I
can quickly create an effect that can run through every frame. With Photoshop
I was using tools to paint over pixels, frame by frame, creating a very rich,
variable effect, which tends to have a different look to After Effects.
After having painted each frame in order to look very much the way it did on
that day, I was very surprised when I ran the footage back and found that the
effects of vision loss I had painstakingly created were almost non-existent. I
realised that when one views a still image, it is very different to viewing a
moving image. The effects of the scotoma seemed swamped in the moving
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footage. Was this because one moves the eyes around, constantly sweeping
across the field of view to gather information around the scotoma? Did this
mean that my visual symptoms are much worse than I think they are, in that
they tend to be circumvented by my moving eyes? While I was not sure of the
cause of this result, I returned to each frame of the footage, augmenting each
further, so that when the footage ran together again it appeared to be much
closer to what I had experienced on that day.
I wondered what the scotoma itself might look like without its background
context. What shapes, colours, and forms did it actually consist of?
Because I had painted over each frame of the footage using a new independent
layer, I could take the background away, and for the first time, be able to see
the scotoma in its own right, without the context from which it arose. It
changed shape, form, and colour, depending on where it was that my eyes were
moving in the scene, and according to the changing colours or lighting
conditions.
To heighten the contrast, and accentuate the scotoma more fully, I made the
background blue, so that the ‘diseased’ layer sat on top. Now the effects of the
filling-in process that my brain was trying to achieve were clearly evident: I had
created my first portrait of a disease.
I also added a red dot to represent the approaching tram, as this was the focus
of my conscious attention, in which my eyes, constantly moving, tried to discern
the approaching vehicle using peripheral vision. The first image below shows
the original work, with the scotoma in its background context, while the second
image shows the scotoma without its context and set against a bright blue
background.
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Illustration 27: Stills from St Kilda Rd, showing the scotoma within its context and without
These animations focused primarily on absence or erasure, but they also

portray the sensation of pulsation and vibration, which, as mentioned above on
the discussion of the perceptible ‘orange ring,’ are always present in my field
of view.
I cannot determine the cause of these vibrations that appear over my central
field. However, I also notice them in the periphery, particularly when the light
is bright. I do not know if these perceptions are a result of saccades, those
imperceptible but rapid eye movements we all make as our eyes try to find
focus in our moving world.299 These throbbing, pulsating effects can be
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described as sparkling lights, or strobes, or scintillating fairy lights, or snow
falling across my field of view, their appearance varying according to lighting
conditions, the scene that I am currently viewing, or simply visual fatigue.
In 2013, I undertook an Adobe After Effects course and I produced more work
using this method of production, including riding on buses, watching my
youngest daughter playing on the swings, and riding my bike while wearing a
GoPro. All these works incorporate the phenomena of pulsation, movement
and light, using different After Effects simulations as required.
5.5 Destruction, rupture and paper
The characteristics of destruction and rupture can correlate with the physical
effects of macular dystrophy, and they mirror the destruction and rupture
caused by the disease at a cellular level. In purely visual terms the scotoma is
highly destructive, obliterating anything that falls within its path. At the
beginning of the research project, I explored the notion of destruction and
rupture by producing a number of drawings, predominately of famous
ophthalmologists. I produced these on thick rag paper, which had the capacity
to withstand quite a degree of manipulation without destroying the paper
altogether.
I then hacked into the paper with knives and etching tools, mimicking the
destructive effects of the disease. By reproducing the images as prints on rag
paper, I was able to produce a series of works, which progressively showed the
destruction of the image, again mimicking the progress of the disease over time.
While I did not produce more works using this technique, it did open up
questions about how to use entropy, destruction, and rupture, in my work using
other materials, and I subsequently explored the effects of chemicals and glazes
to create further entropic effects over images.
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Illustration 28: Drawing Dr Stargardt, and destroying paper
5.6 Colour
As discussed in section 2.3.2 Photoreceptors, maculas contain photoreceptive

cone cells, which collect information regarding the frequency or wavelengths of
light.
Since these photoreceptor cells that detect colour are most concentrated at the
macula, one would expect that the sense of colour vision would diminish in line
with macular degeneration, and that the world would become ever more grey.
But this is not the case for me. I still see colour – it seems to occupy my entire
field of vision - and I am still thrilled by it. How is it that I still see colour, even
though my macula is diseased? Strangely, I still see colour even in the area of
absence because in that area of absence, I am experiencing cortical
completion.300 For example, in the artwork Seven Crackers on a Red Board, I see
red and not black, or even grey in the area at the centre of my visual field.
300 Pessoa, Luiz, and Peter De Weerd. 2003. Filling-in. [electronic resource]: from perceptual
completion to cortical reorganization: Oxford; New York : Oxford University Press, 2003.
Bibliographies Non-fiction Computer File.
185
Furthermore, colour has an intensity for me, in the same way that I feel that
intensity when I look at a van Gogh painting, which seems to operate on the
juxtaposition of colours to produce movement and energy.
Even though edges disappear into one another and forms are softly focused, I
use colour to detect forms and to help me identify objects in the world.
Why is it that I still see and respond to colour? Is it because, over decades of
exploring art, I have heightened my perceptions of it to the extent where this
heightened perception still resists macular changes? Because my sense of
colour does not seem to have been significantly affected by my disease, I have
not examined this aspect of perception in my research project, and the art
works I have produced reflect this. Further discussion on colour and filling-in
can be found in the following reference.301
5.7 Facelessness
Those with central vision loss know that two major features of this condition
involve the inability to see faces (unless very close), and the inability to read
text, particularly the printed word. I will deal with these two issues separately
below, discussing their subject matter in relation to the art works I made to
explore them.
301 A discussion of the possible cases of neural filling in of colour can be found in Pessoa,
Luiz, and Peter De Weerd. 2003. Filling-in. [electronic resource]: from perceptual
completion to cortical reorganization: Oxford; New York: Oxford University Press, 2003.
Bibliographies Non-fiction Computer File., chapter 6
The reader is also guided to an informative discussion of colour, its historical

perspectives and its implications in the brain and perception. Although the article pre-
dates (by decades) much of the current neuroscience understandings of visual
perception and its relationship with colour, the article is very useful in regard to an
understanding of the processes of art and the brain. See Birren, Faber. 1976. "Color
Perception in Art: Beyond the Eye into the Brain." Leonardo 9 (2):105 - 110.
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Faces are very hard to see, and I have called this characteristic of central vision
loss ‘facelessness’. I initially explored how this looks to me by using two very
famous portraits, one of the Mona Lisa by Leonardo da Vinci,302 the other a self-
portrait by Vincent van Gogh.303 The portrait, the Mona Lisa, is of muted tones.
For a person with low vision who finds it harder to discern contrast, this means
that the Mona Lisa disappears into the background, perfectly melting into the
landscape behind her. Only her shoulders and hands remain present, albeit
blurred, a phenomenon that is very persistent in my experience with vision loss.
I completed a reworking of the Mona Lisa early on in the research project, to
show how low contrast can affect the perception of faces.
It shows how the completion phenomenon successfully reorders the perceptual

space over her face, filling it in with soft focused sky. In contrast, the self -
portrait by Vincent van Gogh proves a more difficult task for the process of
cortical completion. Due to a higher level of contrast between the blues and
yellows that van Gogh has used in this portrait, the completion process does
not work as well, and the face ends up looking more like a ‘jumbled pizza’. The
two portraits are shown below.
302 Leonardo da Vinci, Portrait of Lisa Gherardini (Mona Lisa), circa 1503-1507, Oil on polar,
77 x 53 cm, Musee de Louvre, Paris
303 Vincent van Gogh, Self-Portrait, August 1889 Oil on canvas, 57 × 43,5 cm, National
Gallery of Art, Washington D.C.
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Illustration 29: Missing Mona Lisa and van Gogh's head
The inability to recognise faces as a result of central vision loss is exasperating.

It means amongst other things that one cannot discern visual cues in
conversation, let alone recognise when a friend or acquaintance passes by.
Exploring the concept of facelessness through my art practice resulted in a
number of portraits; both self-portraits and portraits of others, to explore the
phenomenon, and perhaps convey some of the sense of distress that this aspect
of vision loss causes. In 2014, I developed a number of works focusing on the
self-portrait, which had been inspired by Jacques Derrida’s Memoirs of the
blind.304 (Refer section 4.9.3 Derrida, art practice and blindness)
In one particular body of works, I explored the completion phenomenon, in

which my head completely disappeared into the background. I used
photography in this instance, and then augmented the photos with Photoshop.
Because the background in the room was white, my head melted seamlessly
into the wall while my dress remained visible. In this instance I had to use the
camera function on my iPad, because the screen was of a sufficiently large size
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for me to be able to see that I was within range of the camera's eye. From a
short distance, and using my peripheral vision I could see a blurred outline of
my dress on the camera’s screen, and I placed my arms in various positions to
show the area of the scotoma from the distance I was viewing the iPad at. It
was only when replaying the images that I could see what the camera actually
saw in the area obscured by the scotoma. It was a strange ‘reverberating’ kind
of experience: I was viewing my own viewing of viewing.
Illustration 30: Measuring the scotoma - self portraits with white background
Further works exploring the idea of not being able to see oneself were
developed, and this time the camera itself became an integral part of the
composition, a kind of witnessing instrument involved in the witnessing itself,
playing a little further on the idea of viewing one's own viewing.
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Illustration 31: Self portrait with iPhone
Portraits of other people were explored in this manner, and I was reminded of
Edward Munch’s sketch of a man while observing him through his scotoma.305
In my case, I was able to use combinations of photography, animation, paintings
and drawings to convey the disembodied quality of talking to someone without
their head being visible.
As an aside to the exploration of central vision loss and facelessness, I have
305 Edvard Munch: Sketches of Heads and the Artist's Injured Eye, with Text, Indian ink,
pencil and crayon on paper, 18.1 x 22.3 cm, Munch Museum Oslo. (Taken from Munch,
Edvard, Angela Lampe, and Clément Chéroux. 2012. Edvard Munch: the modern
eye: London : Tate, 2012. Non-fiction)
190
realised that I do not turn my head in order to see people better, but instead I
continue to gaze at them through the blind spot, so that I can hear them better.
I have sacrificed my ability to see a face in order to be able to hear what they
are saying, and because of this I am constantly talking or listening through the
scotoma.306
The scotoma, combining with the phenomenon of cortical completion also

contributes to strange effects over peoples’ faces. On some occasions, the area
of vision loss will be filled with the colour, or pattern of the item the person is
wearing, while at other times the area of invisibility is filled with whatever I
seem to be thinking of. In this way, the notion of palimpsest307 also arises – that
is, the reinscribing of the visual field, to fill in and over the area of absence being
experienced. Palimpsest seems to be most evident when I am experiencing
facelessness, more than on any other occasions.
There is no doubt vision loss affects the process of socialization as a result of

the inability to see faces clearly. It was surprising to find, during a conversation
with a friend who has Asperger’s Syndrome, how similar our difficulties are in
recognizing faces. Various neuroscientists have covered the topic of face
blindness including Oliver Sacks, who explores the phenomena in The mind's
eye,308 particularly in relation to Prosopagnosia (face blindness).
306 The researcher met a visiting ophthalmologist from the US, who was surprised by my
apparently steady gaze while talking to him. When I explained that I could not see him
through the scotoma, he suggested that I press my finger firmly onto the lid of my eye
to see if that might displace the scotoma, so that I might be able to see him better.
Unfortunately it had no effect, except to make me feel rather ill, and cause more flares
and sparkles in my visual field. My penetrating gaze might seem convincing at times, but
I really do not see faces well unless extremely close, and the act of conversation as a
result of vision loss, is exhausting after a period of time.
307 A definition of palimpsest can include the reworking over a manuscript page, in which
the text has been removed in order to be re used. In an art context, it can be the re
inscribing over something that has been worked on removed previously, thus creating a
re inscribing of the visual field.
308 Sacks, Oliver W. 2010. The mind's eye: London: Picador, 2010. Bibliographies Non-
fiction.
191
The difficulty is further exacerbated in situations where I have had
conversations with people I do not know very well, and am standing close to. I
may have met and talked with them on several occasions, but I would have
almost no idea what they look like, and I have been unable to form a memory
of their faces. It is easier to recognize them by their general outline, movement,
gestures and tone of voice, or even ‘vibe’, which generally encompasses all
these qualities and includes a general attitude that permeates a person's
character and makes them more identifiable. In terms of the production of art,
these types of characteristics may be employed by political cartoonists, in which
caricatures accentuate the idiosyncrasies of a person's face or personality,
making them so easily identified.
In my portraits of people and in my conversations with them it is these

characteristics that I ponder as I gaze into the space where the heads should be.
It is these essences of a person, captured on canvas, that make a portrait a
portrait.
Nonetheless, these techniques are not always reliable, and there have been
many times when I have warmly greeted a stranger by their names, only to hear
their reply “I’m not so and so!”
5.8 Wordlessness
The other major feature of life with central vision loss is the inability to read
texts, particularly the printed word. In my early teens, I could devour
Dostoyevsky in two days, but this is no longer possible. At the beginning of this
research project, I was able to read printed text with a strong magnifier, and my
nose pressed to the page. At this point in time, I cannot read text as easily
anymore, even with magnifiers, and I have had to resort to finding most of my
material for this research project via electronic text, which is usually able to be
both enlarged by my large screen computer, or be read to me via text to speech
software. It has become evident to me that electronic text is particularly
192
accessible, because text is back-lit on a computer screen or iPad.309,310 Oliver
Sacks also discusses this in The mind's eye, when he loses central vision and is
unable to read even the large print headlines in the New York Times.311 The
ability to have access to words is vital for those with central vision loss.
Using a keyboard is also difficult, as I cannot see the keys, even from a short
distance away. As I write this, I am using a function on the computer to dictate
the words, so that I can to some extent circumnavigate the inability to see the
letters on my keyboard. These issues are covered briefly in another section,
where I discuss how I conducted the research project despite central vision loss
(refer section 4.16
Doing research with low vision).
Returning to the issue of wordlessness, I completed a number of works focusing

on this issue. I took photographs of words on pages, and augmented them to
show how it looks to me. Michael and David Marmor also discuss the issue of
the printed word for those with central vision loss in an article regarding
simulating vision loss.312
309 Consumer Health News (English). Nov 12, 2012. "Could iPads, Kindles Be Just What the
Eye Doctor Ordered? Digital tablets improve reading speed of those with central vision
loss, study finds."
https://ezp.lib.unimelb.edu.au/login?url=https://search.ebscohost.com/login.aspx?dir
ect=true&db=edsggo&AN=edsgcl.308282356&site=eds-live&scope=site.
310 For a discussion of reading strategies for those with Stargardt’s Disease see
Goldschmidt, Mira, Anouk Déruaz, Erika N. Lorincz, Andrew R. Whatham, Christophe
Mermoud, and Avinoam B. Safran. 2010. "Reading strategies in Stargardt's disease with
foveal sparing." BMC Research Notes 3:15-20. doi: 10.1186/1756-0500-3-15.
311 Sacks writes,"...I found I could not read even the large headlines of The New York Times.
This terrified me, showed me what loss of central vision was like". Journal entry
December 24, 2005, in the chapter Persistence of Vision: A Journal, Sacks, Oliver W.
2010. The mind's eye: London: Picador, 2010. Bibliographies Non-fiction.
312 Marmor, David J MFA, Marmor Michael. 2010. "Simulating Vision With and Without
Macular Disease." Arch Ophthalmol 128;1:177-125.
193
It is very difficult to read, as one has to use peripheral vision to read above the
words in order to discern what those words might be.313 I have to contend with
the general shape of words in order to be able to identify them, and like the
processes of drawing, I have to use the idea of intervals between shapes in
order to guess what the words might be. This is also apparent if I’m trying to
read the signs at the train station on the electronic display boards. I can identify
my destination by seeing the length of the shape of the name of the destination
on the electronic screen, scanning for intervals between words or trying to
identify capital letters at either the beginning or the middle of the words, to
indicate a two word destination, but this has proved extremely difficult and
signage is always a huge issue and one that desperately needs to be addressed
in the everyday landscape of the city.314 I have explored these dilemmas through
my artworks, taking photographs of train station signage, tram stops and bus
stops.
Illustration 32: Tram stop, Federation Square, scotoma over signage
313 Using single words to identify where the eye fixates outside the area of the scotoma
when reading revealed that patients with central vision loss are (a) usually unaware of
their adaptive eye movements and (b) use several different fixation points (known as
Preferred Retinal Loci (PRL), for eccentric viewing) outside the area of the scotoma. See
Duret, Florence, Marc Issenhuth, and Avinoam B. Safran. 1999. "Combined use of
several preferred retinal loci in patients with macular disorders when reading single
words." Vision Research 39:873-879. doi: 10.1016/S0042-6989(98)00179-5.
314 See also Chung, S. T. L. 2012. "- Dependence of Reading Speed on Letter Spacing in
Central Vision Loss." - 89 (- 9):- 1298.
194
Metamorphopsia becomes particularly evident when reading. I find that text,
even in large format and back-lit on my computer screen, becomes smudged,
swirly, as if though oil on a Q tip (a cotton bud) has been scribbled over them,
or broken or fragmented, as if though they were printed on glass and then
shattered.
They appear different at different times, and I have no understanding as to why

this is the case, but it is something that I have explored in my artwork. This was
not too difficult to simulate using photographs of books, or text from the
computer screen, and then augmenting them in Photoshop or After Effects.
Sometimes, I imagine I can see part of a letter deep within a scotoma, as if there
is some macular sparing. I have tested this many times – thinking: “oh yes, I can
see part of a black letter” and, by fixating my eye onto what I thought was the
letter, while holding my finger in the place of where I think I can see it. I carefully
check with my peripheral vision, only to find I am several centimetres from the
location of where the letter should be.
It is as if though I have displaced photoreceptor cells, repositioning the

fragmented letter into some other part of the visual field. Even though I have
repeatedly tested this curious percept, I still do not understand what is causing
this, and it could just be that I want to see a letter, and that it is another trick of
cortical completion. I have produced a work exploring this phenomenon, shown
below.
195
Illustration 33: Text with finger and scotoma
In the image above, my finger, resting across a computer screen with text, is
positioned within the field of the scotoma – the finger disappears as is
expected. But a portion of the black letters still appear in the centre, when I
know that the finger is actually covering this part of the text. Therefore, I should
really be seeing part of a finger in the centre if there is macular sparing, but
instead, I see no finger, but rather, I perceive a portion of a black letter. I am not
sure of what exactly is happening, and I suspect that my visual cortex is
generating an image., It is clear that the processes of art can help me explore
these strange perceptions, and that, yet again, the processes of art practice as
research in the most basic empirical sense, cannot only explore our visual world,
but hopefully, help us find the answers to such intriguing questions as well.
5.9 The surprising monotype
The practice-based research began with a separation of mediums comprised of

drawing, painting, printing, photography and animation. I was using both
pigment based and light based methods of production.
196
While separating these elements, and exploring the various characteristics of
central vision loss through them proved very valuable, I eventually found an
entirely new technique that incorporated various elements of these media, that
could produce a more effective result, since my aim was to describe the
experience of macular dystrophy as accurately as possible.
This discovery was made, surprisingly, through mono-printing, that seemingly

simple process of transferring one image onto the substrate of another.
The problem was that none of the above mediums seemed to capture it all,
each one could express elements of the various characteristics of central vision
loss, but none really came close to the quality of vision that I was looking for.
Central vision loss hovers in an area between visual ambiguity and a visual
resolution, a topic that is discussed at length by David McDowell.315 I needed to
find a way to represent this very real visual experience, my own personal
perceptions of trying to constantly find order and cohesion in the visual chaos
at the centre of my vision.
While drawing could explore the loss of edge, it was still an exploration of edge,
which was diminishing for me, and seems to now be more in the domain of
those with finer visual acuity.
I have to find edges by using colour, to indicate where things begin or finish.
Also, the transition between the scotoma and the beginning of peripheral vision
would make one think that there is an edge, where the scotoma logically ends
and vision begins, but this is not the way it actually is for me.316 It is much more
315 See McDowell, David. 2011. "Image Irresolution: Between Perception and Percept."
International Journal of the Image 1 (3):87-98 and his PhD dissertation McDowell, David.
2013. Image irresolution: representational/perceptual openness and painting's play of
light. Theses Bibliographies Non-fiction.
316 The quote by Dr. Duane Geruschat, in the section on Scotoma regarding the difficulty in
distinguishing where scotomas end and the periphery begins, is certainly relevant to this
discussion.
197
like a smooth transition from absence at the centre, to a field of visual
perceptions at the periphery beyond, an imperceptible transition from absence
(nothing) to something, from abstraction to representation. While drawing
carries with it the trace and other philosophical notions, in this instance I talk
of drawing as to how it appears on paper, and in relation to the visual aspects
of vision loss.
Painting did not fulfil all the criteria I was looking for either – it was extremely
difficult to paint into a white canvas when I could not see the brush any longer,
or successfully identify the paint on the palette (due to the scotoma, not the
ability to identify colours), and many mistakes were made. There was a vast gap
between the objects I saw in front of me, and the ability to put this down on
canvas.
I had begun experimenting with painting very early on in the research project.
I had decided to do a simple exercise - a small painting of a white teapot on a
blue background. It was a shock to realise a simple task like painting a still life,
was now incredibly difficult. After years of having been able to paint, even with
increasing vision loss, my eyesight was now much worse. I had placed the white
teapot, with its lid, onto a dark blue background, thinking that this would be of
such high contrast that it would be enough to find the form of the object set
against it, and that I would still be able to identify something white from
something dark blue, finding figure from ground.
But it was not at all easy, and stepping back to the easel, all I could see was a
sea of dark blue; I could not find the teapot at all. This painting was done under
the lights of the studio and it was bright enough for me to have been able to
identify it easily, but the extent of vision loss was such that even this apparently
simple exercise proved challenging.
Nonetheless, I proceeded to complete the task, feeling the bitterness of not

being able to see what it was I was looking at, unless I used my peripheral vision
(I remembered Degas’ frustration at always having to look around the subject,
198
never at the subject itself.317) I took photographs of the painting as I continued,
showing the work at successive stages of development, in order to describe the
movement from perception of an object (albeit with great difficulty), to the
establishment of the object within the context of its background, and within
the parameters of the creation of a painting, and then finally, the submergence
into a deep blue sea of paint, which is, in the end, exactly how it looked!
illustration 34: Stages of the teapot painting (oil on board)
It was clear to me that painting alone was not going to fulfil my goal of showing
the effects of vision loss without some further aids.
The immediacy of drawing was useful, and as in the case above, the materiality
of paper and its destruction, which echoed the destruction of cells in the
macular, was much easier to contend with, although I needed to be able to use
both central and peripheral vision to complete this task. I realized that, when
drawing, one engages both peripheral and central vision. In other words,
successful drawing in the representational style depends on the intervals
between things – the location of lines in relation to one another, separated by
spaces. For example, if one is drawing the inner corner of an eye in a portrait,
317 Refer to the quote attributed to Degas, see section 3.6.3 Edgar Degas
199
the distance between the corner of the eye and the bridge of the nose is a
consideration, as it is different for every face. In a particular portrait I may ask:
“How far away from the bridge of the nose is the corner of the eye?”; “How
high above the bridge of the nose, or below the bridge is the corner of this
eye?”; and “How does all this operate in relation to the rest of the face?”. A
successful rendition of someone’s face always includes a consideration of these
questions, because the relationship of shapes is what makes up everyone’s
individual facial characteristics and creates a successful representation or
likeness in a portrait.
In my drawings, this sense of being able to find relationships easily and quickly,
moving from what was in front of me, to the paper, was now gone. And if I put
my pencil into the position of where it needed to be, I could no longer find it
because my scotoma was always in the way. It was exactly as Degas had said –
the frustration of never being able to look at the subject, but always looking
around it. Now I had to use peripheral vision for both functions of drawing. Now
I was placing the pencil where I thought it should be, into the blind spot, and
generally this was guessing, rather than accuracy. It involved much more
thought about what might be there, instead of being able to see what was
actually there, which was defeating the purpose.
Derrida hypothesis that “the drawing is blind, if not the draftsman or

draftswoman. As such, and in the moment proper to it, the operation of
drawing would have something to do with blindness.”318
In my experience, it was this relationship between drawing and blindness,

combined with the scotoma in front of me, and the scotoma into which I was
drawing – a doubling if you like, of the visual problem – which is always the
inescapable issue.
200
Photography circumvented this problem to some extent, as I only had to deal
with the problem of the gap between what the camera captured and how I saw
it - I could take a picture and the camera could capture the scene and then I
could proceed to alter what the camera saw to the way I saw it. I could find a
point of departure.
Still, there are philosophical issues with photography – David Hockney believes
that the camera lies, that it does not give us a true representation of experience
in the world, and that it does not capture certain qualities about depth and
perspective, instead altering them by putting them onto a two dimensional
plane, which creates a strange distance between the flatness of the photograph
or its angles, and what the observer actually sees in three-dimensional space.319
There was a huge gulf between what the camera saw with its perfect focus, and
what the world looked like to me, and augmenting the photos was a way to try
to move from one to the other.
Still, photography did not exactly meet my requirements – the surface of a

photograph is always strangely ‘hard’ for want of a better word, perhaps due
to the way the ink sits on top of the surface of the paper. I see the world with a
certain softness, as if though it is painted onto deep, plush velvet. I wanted to
replicate this softness somehow.
Animation was useful and instructive - it showed the pulsation and movement
that is at the heart of my lived experience of macular degeneration, but this
was still not quite what I was looking for.
319 See an interview with Hockney on how cameras lie: Jones, Jonathan. 2004. "David
Hockney: We can't trust Photographs : Disposable Cameras." The Guardian, 4 March
2004, 1-5. Accessed 18 March 2012.
http://www.theguardian.com/artanddesign/2004/mar/04/photography
201
It was while playing with monoprinting techniques that I discovered a way
through; a method of working that could articulate more fully my visual
experience.
This method of working incorporated elements of many different ways of art

production, integrating photography, animation, monoprinting and painting.
Using this technique, I could print onto smooth paper, which brought with it a
sense of the velvety quality I was looking for, because this method absorbs ink
into the paper rather than leaving it to sit on top. It was not like giclée printing
(high quality ink jet printing) at all, and it did not carry with it the hard quality
of the photographic print.
Using the monotype as a basis for working, I could adapt these techniques, and
apply images to a wide variety of substrates. I could manipulate images through
computer software, and I could augment them further through painting
processes, glazes, or experiment with the interaction of various chemicals over
the surface of the images to achieve the look I was after.
In the end, the most effective method of relating my experience of central

vision loss was not one method or medium over another, but the synchronous
application of many of them, using the monotype is my starting point. Now I
was using both pigment-based and light based methods of production in
conversation with one another.320 I began using this method in the latter stages
of my research project, after much experimentation, and this work continues.
320 See Smythe, Luke. 2012. "Pigment vs. pixel: painting in an era of light-based images."
Art Journal (4):104 for a discussion on traditional and contemporary methods of art
making.
202
This chapter summarised some of the key findings of my research project, in

which I paired various characteristics of the void with different methods of
production. Photographing the void was a way to explore the sensations of
absence and erasure, and I was able to find significant differences between
these qualities of perception. Exploring them through photography and
animation brought an understanding as to the nature of central vision loss.
Drawing brought with it notions of destruction and rupture, through the tearing
and scraping of paper, while the characteristics of facelessness and
wordlessness explored the various forms of art making, including drawing,
mono printing, and photography. Working with all these media enabled
discoveries about the nature of vision loss as I experience it, and how each
medium lent qualities that brought out the various characteristics of vision loss
to one degree or another. It was the monotype, incorporating other elements
of art making that enabled the way forward to better describe the softly
focused, velvety quality of my vision.
203
204
SECTION 3: VISUAL PERCEPTION
205
206
6 Grids
This chapter explores some of the qualities of the grid as it is used in both art
and ophthalmology, revealing important links between ophthalmology, art,
visual perception, eye disease, and my research into the experience of macular
dystrophy.
It introduces the Amsler Grid, a diagnostic tool used by both eye health
practitioners and patients alike, in the early detection and monitoring of
macular disease.
It explores some qualities of grids as identified by art theorists, and compares

and contrasts these findings with aspects of Amsler Grids, revealing
correlations that may account for both the Amsler Grids’ enduring popularity
and usefulness, and the continued prevalence of grids in art.
In this context it examines some common ground between art and

ophthalmology through the employment of the grid.
It briefly explores some of the aspects of the use of grids by other artists,
including those artists previously identified in this dissertation who used grids
to relay the visual disturbances caused by their eye conditions and vision (refer
sections 3.4.6 Paul Hackett and 3.5.1 Edvard Munch.
These discussions also provide a context for the examination of the researcher’s
use of grids in some of my art works, but also, importantly how the Amsler Grid,
and Amsler’s work with the perception of eye disease by patients themselves,
informed and contributed to my research project.
207
6.2 Grids
A grid can be defined as a framework or network of bars that cross each other
to form squares or rectangles across a surface.321 Grids have been pervasive
throughout the history of Western art and culture, and there is an extensive
amount of literature on the subject,322 to the point where even a brief analysis
within the limits of this dissertation could not do justice to such a topic.
However, I do want to examine at least some of the themes and qualities of
grids in this chapter, as I believe these form important links between
ophthalmology, art, visual perception, and my research into the experience of
macular dystrophy.
6.2.1 Grids, art and optics
Albrecht Durer’s woodcut of a ‘perspective machine ’ published in The Painter's

Manual in 1525,323 clearly shows the artist’s intent to capture and map visual
perceptions onto a two dimensional plane through the use of a grid,324
demonstrating the preoccupation of the use of grids in Western art.
321 http://www.oxforddictionaries.com/definition/english/grid
322 See Higgins, Hannah. 2009. The grid book: Cambridge, Mass: MIT Press, c2009, for a
thorough examination of the grid in various forms, from the Palaeolithic brick to the
globe encompassing World Wide Web.
323 Dürer, Albrecht, and Walter L. Strauss. 1977. The painter's manual : a manual of
measurement of lines, areas, and solids by means of compass and ruler assembled by
Albrecht Dürer for the use of all lovers of art with appropriate illustrations arranged to
be printed in the year MDXXV: New York: Abaris Books, 1977. Bibliographies Non-fiction.
324 A discussion of Durer and use of grids is at – notes just for me -

https://virtualterritory.wordpress.com/category/perspective/
208
Illustration 35: Durer Grid
Albrecht Durer, Draftsman Drawing a Reclining Woman, 1525, Woodcut, 7.7 x 21.4 cm, The
Metropolitan Museum of Art, NY, on line collection,
http://www.metmuseum.org/collection/the-collection-online/search/366555
During the Renaissance and beyond, science, mathematics, physics, medicine

and philosophy, (which all had implications for the field of optics), also explored
the relationship between physical reality and perceptions of it. French
philosopher and mathematician Renee Descartes, published Discourse on the
method325 in 1637, and the development and publication of his Cartesian
Coordinate System in the same year, which mapped space and conceptualized
physical reality into grid like planes, further underscored connexions between
reality (three dimensional space), vision and perception. According to Michael
Marmor, in A Brief History of Macular Grids326 by the time Scottish philosopher
Thomas Reid published his work, An inquiry into the human mind, in 1785,327
325 Descartes, René, David Weissman, William Theodore Bluhm, and René Descartes. 1996.
Discourse on the method ; and, Meditations on first philosophy, Rethinking the Western
tradition: New Haven : Yale University Press, c1996. Also view the publication at Project
Guttenberg: http://www.gutenberg.org/ebooks/author/44
10.1016/S0039-6257(99)00113-7.
327 Reid, Thomas. 1785. An inquiry into the human mind, [electronic resource] : on the
principles of common sense. By Thomas Reid, D. D. Professor of Moral Philosophy in the
University of Glasgow: London : printed for T. Cadell in the Strand, London; and J. Bell
and W. Creech, Edinburgh, M,DCC,LXXXV. [1785]
209
arguments around how physical reality was transformed into internal
perception, had become the centre of philosophical debate, and this may have
been a reason that Reid, a philosopher and not a medical practitioner, had
become interested in his own retinal disease and its resultant perceptual
distortions.
As seen in section 3.9 Metamorphopsia, Reid (with perhaps the first

documentation of this type of retinal disease), observed that his visual
perceptions became apparent when viewing the parallel lines of a grid-like
musical stave. Marmor notes that it took another century after Reid’s
descriptions, before grids started to appear in ophthalmic literature as a means
by which to describe visual distortions caused by disease, with the first known
illustration of the area of such distortions over a grid, published in 1862 by
German ophthalmologist Richard Forster328 (refer section 3.8 Scotoma).
Illustration 36: Forster Grid
Förster R (as cited and illustrated in Amsler’s article on earliest symptoms of diseases of the
macula) Metamorphopsie. Ein Symptom partieller Schrumpfung der Retina (Retinitis
circumscripta). Berlin, Ophthalmologische Beiträge, 1862
The fourth edition corrected. Book

328 Forster Grid as illustrated in Amsler, Marc. 1953. "Earliest Symptoms of Diseases of the
Macula." British Journal of Ophthalmology 37, 521. Page 527
210
6.3 Clinical testing of the macula
In the first half of the 20th century, Swiss ophthalmologist Dr Marc Amsler,
noting Reid’s descriptions of metamorphopsia, and the subsequent use of grids
to detect metamorphopsia by Forster and others, started to develop his method
of grid testing for maculopathy, with the publication of the Amsler Grid test in
1947.329
Marmor also notes that up until Amsler’s publication, grids had generally been
used to describe metamorphopsia from retinal oedema, rather than the
plotting of scotomas or the monitoring of retinal haemorrhage; there had been
no effective treatment available until then. As therapeutic advances increased
over the course of the last century such as ophthalmic lasers that became
available in the early 1960s, the incentive to detect macular changes at the
earliest possible time further popularised the use of grids as a way of mapping
maculopathy. Furthermore, as longevity increased, the prevalence of age
related macular degeneration also increased, giving further impetus to detect
and treat macular disease.
6.4 Amsler and the grid
The Amsler Grid test became a standard and enduring part of ophthalmic
practice in the diagnosis of retinal disease by the mid 20th century. Today, it is
still used by ophthalmologists the world over, and it is also used by patients at
home as a way of detecting changes in their vision. Eye health organizations
provide Amsler Grid charts in their publications along with instructions on how
to use them, while examples can be found all over the internet, ranging from
Amsler’s original grids to digital and interactive adaptations by eye health
organizations and vision researchers.
329 Amsler, Marc. Amsler Charts Manual. : London: Hamblin (Instruments), 198.
211
Why did the Amsler Grid test become, and continue to be, so useful, popular
and enduring after its initial publication, despite many attempts to redefine,
redesign, or eradicate it altogether?
I will argue that the continued relevance and use of Amsler’s Grid as a
diagnostic tool in ophthalmic practice can be understood to some extent by an
analysis of the grid’s role in art, and that these same qualities of the grid have
been instrumental in my exploration of the experience of vision loss and the
making of art.
Amsler intended his grid test to capture and analyse the types of visual function
disturbances that indicate diseases of the macula. To this end he devised a
series of seven grids designed to detect both the beginning and evolution of
these types of eye diseases.
After years of development,330 Amsler invented 7 grid charts, each with specific
functions and accompanying intentions. All seven grids are uniform in size,
measuring exactly ten centimetres square, although each varies somewhat
from the other according to diagnostic purpose.
Amsler was very specific about the size of these charts. The outside
measurements of the grids had to be exactly 10 centimetres, and for all those
charts that contained both horizontal and vertical lines, these had to form
squares of 5 millimetres each.
These sizes had to be accurate, as exact linear parameters enabled the charts
to become instruments, which could help assess the extent of a particular
maculopathy, and the degree, to which it was causing disturbances of the visual
field. Put simply, units of measurement within the chart corresponded to areas
330 Amsler notes that he had been experimenting with the grid as a diagnostic tool for some
25 years prior. See Amsler, Marc. 1953. "Earliest Symptoms of Diseases of the Macula."
British Journal of Ophthalmology 37, 521. Page 533
212
on the macula as a topographic map. Amsler intended the 10 cm grid, when
held at reading distance, to reveal the exact 10 degrees all around the central
point of fixation from the fovea. Amsler also points out this area does not fall
into the actual blind spot that all eyes have.331
Therefore, the grids become an accurate measuring instrument for assessing

the topography of the posterior pole of the eye,332 and for this reason, holding
the charts at a distance of 28 to 30 centimetres from the eye was strictly
adhered to during the examination as this was the standard distance for
reading tests.
Any refraction of the eye had to be exactly corrected for this distance before
commencing the tests. The charts had to be clearly and evenly lit, and no other
interventions given during or prior to the examination. Each eye had to be
examined separately and the comparisons made between the left and right
eyes, as Amsler understood there were always variations in each eye, both in
the degree of disease and its visual symptoms.333
6.4.1 The grids 1 - 7
Chart No.1 is the standard chart, which Amsler intended to be used in all cases
of examination. It is comprised of a dull black background upon which both
horizontal and vertical white parallel lines comprise its surface with perfect
uniformity, forming a grid of 400 small squares. At the exact centre of this grid
is a small white dot, which helps to locate the central point of fixation (refer
Figure 7).
331 Amsler, Marc. Amsler Charts Manual. : London: Hamblin (Instruments), 198, page 2
332 “The dimensions of our network are as follows: 10 cms for the outside measurement
and 5mms for each small square. The linear measurements correspond to an angle of
20° and of 1°, when the chart is held 28 – 30 cms away from the eye”. Amsler, Marc.
Amsler Charts Manual. : London: Hamblin (Instruments), 198, page 2
333 Amsler, Marc. Amsler Charts Manual. : London: Hamblin (Instruments), 198. Page 5
213
Chart No.2 is identical to the first, but with the exception that two white
diagonal lines cross from point to point at the four corners of the grid,
intersecting at the central point of the white dot. This chart is intended for
those patients who can no longer fix upon the central white dot itself, due to
central vision loss. The diagonal lines help the patient to maintain fixation at
the centre of the grid.
Chart No. 3 is once again a black square, but this time with red horizontal and
vertical lines, with a red dot at its central fixation point. Amsler intended this
chart to be used in cases of colour scotoma.
Chart No. 4 differs significantly from the previous charts, although once again it
is a black square of 10 cm in size. This time, instead of a set of uniform horizontal
and diagonal lines, there is nothing but a field of small white dots uniformly
dispersed across the chart. Amsler intended this chart to reveal only the
scotoma. There is no form to be distorted, no lines or squares to be bent by the
presence of metamorphopsia.
Chart No. 5 is once again a black square 10 cm in size. This time it contains only
white horizontal lines running parallel, again with a white dot at the central
point of fixation. Amsler intended this chart to be held both horizontally and
vertically to reveal the distortions of metamorphopsia.
Chart No. 6 is the only white chart in the series. It has nineteen black horizontal
lines running across its surface, with a black dot at the central point of fixation.
This time, however, two more black horizontal lines run across the centre,
creating narrower parallel spaces in between the larger black lines. This chart
was developed by Amsler to allow a more minute examination of distortions
caused by metamorphopsia, particularly along the reading lines.
Chart No. 7 returns to the format of Standard Chart No. 1. This time however,
there is an additional grid overlaid at its centre. This grid is comprised of
seventeen white vertical lines running in between each of the larger white lines,
and thirteen white horizontal lines running between the white horizontal lines
214
of the larger grid, so that this forms a small grid of equally spaced squares within
the larger one. However, it does not form a uniform square, but rather a grid
of only 192 small uniform squares nested within the larger grid of 400 uniform
squares. This allows for a more minute examination of the juxta-central area,
where the rectangle’s subdivided squares indicate the limits of the fovea.
Amsler invented this chart for cases of high myopia and instructed that it be
held at the punctum remotum (farthest point) of the uncorrected eye.334
Figure 7: Amsler grid no. 1
6.4.2 Guiding questions
Amsler was searching for two distinct functional symptoms of maculopathy in

his grid tests, specifically, scotomas and metamorphopsia (refer sections 3.8
Scotomas and 3.9 Metamorphopsia).
Each grid was accompanied by a series of carefully guided questions, laid out in
logical order. For example, Chart No. 1 began with the question “Do you see the
white spot in the centre of the squared chart?” Three answers were possible:
“Yes, it is absolutely clear”; “Yes, but it is blurred”; or “No, not at all”.
215
In this way, Amsler could determine if there was no scotoma (the spot is
‘absolutely clear’), a relative scotoma (yes, but it is ‘blurred‘, or an absolute
scotoma (I do not see the spot at all). From this point, Amsler could then move
on to subsequent charts to determine the type and size of the scotoma, while
further charts and accompanying questions, relating to the uniformity of both
the lines and squares within them, could detect the presence, and type of
metamorphopsia.
6.4.3 Subjective awareness and the butterfly net
It is clear Amsler was interested in the patients’ own account of his or her visual
perceptions. His grids were designed to capture the nuances and variations of
these perceptual fluctuations, and, if such an examination was executed in a
skilful and guided way, his grids could be “…thrown, like a butterfly-net, before
the patient's eye to catch any visual disturbances.”335
Capturing these elusive symptoms depended on patient and doctor working

together, finding ‘...the best approach to the patient’s understanding of their
own symptoms',336 through dialogue with the grid.
6.4.4 Qualitative assessments
Crucially, Amsler saw his grid tests as qualitative, while visual acuity tests could
only yield quantitative results. Tests like the Snellen chart were simply
inadequate for measuring the effects of macular disturbance. While two
patients could both present to his clinic with a 6/12 vision acuity, one might
complain of the ‘fog’ in his central vision, while the other might complain of
blurriness,337 differences that could not be accounted for in quantitative
Ophthalmology 37, 521. page 529
336 Amsler, Marc. Amsler Charts Manual.: London: Hamblin (Instruments), 198, page 5
337 Ibid., 1
216
assessments. Indeed, quantitative measurements also indicated only a
‘sameness’ (rather like the suffocating consistency of the black spot
representation of vision loss) – that is, in terms that yielded either a “yes, I see
the letter” or “no I cannot see the letter”, but never, “this is how the letter
appears to me”.
In contrast, qualitatively obtained results can provide ample room for a patient
to report their own altered perceptions, and this was important to Amsler for
three reasons:
Firstly, Amsler believed that patients themselves are ‘good observers of their
reading of test types.338 Amsler noted that the contemporary trend of
ophthalmoscopic observation "pays little attention to the functional
disturbances which accompany these diseases", and that, in generations past,
ophthalmologists with far less technical privileges, paid far more attention to
the visual disturbances described by the patients themselves. In fact, “…they
helped them to analyse their visual disturbances, made them draw them, and
339
endeavoured to reconstruct and interpret their subjective symptoms."
Secondly, Amsler believed patients themselves could detect changes at a

cellular level, long before any quantitative findings.340 He noted reports in
literature, that the patients’ functional symptoms did, at times, precede the
occurrence of any organic maculopathy, and that these visual disturbances, if
paid sufficient attention to by the consulting ophthalmologist, could provide “a
Ophthalmology 37, 521, page 522
340 It was imperative to Amsler that if something could be done in the face of devastating
vision loss, symptoms had to be detected as early as possible. He writes “…every
maculopathy has a beginning. It is this beginning which the patient sees and
experiences. It is this beginning which we can record on the functional level of symptoms
which are susceptible to treatment” See Amsler, Marc. 1953. "Earliest Symptoms of
Diseases of the Macula." British Journal of Ophthalmology 37, 521, page 537
217
far more sensitive guide to the course of any maculopathy than changes in the
ophthalmological picture of the lesion.”341
Thirdly, Amsler believed early detection of changes in the macula were vital if
any hope of treatment could be sought. For Amsler, diseases of the macular
were both common and serious,342 attacking the person “in one of his very
sensitive spots making him not only an invalid but are particularly unfortunate
one.”343 The impact of a central scotoma, he asserts, can destroy a professional
career and destroy the normal activity of daily life.
Yet, in the face of despair, it is at the earliest stages, when the patient first
notices his altered perceptions, and long before the lesion becomes established
and evident through the ophthalmoscope, that Amsler says, therapeutic
treatments can offer hope, even providing an opportunity to reverse the
earliest symptoms with rest, vitamin therapies and drugs. Unlike some of
Amsler’s contemporaries, he saw early detection as vital, rather than
unnecessary because there was nothing that could be done to save the
patient.344
These three beliefs may have been very compelling drivers for the development
of the Amsler charts. If it seemed that technology had superseded the primacy
of the patient’s perception of his own disorder, Amsler seemed to also be
Ophthalmology 37, 521.page 523
342 Interestingly he discusses the prevalence of senile maculopathy and an ageing

demographic which seems to be parallel to concerns in our present time. See Amsler,
Marc. 1953. "Earliest Symptoms of Diseases of the Macula." British Journal of
343 Amsler, M. (1953). "Earliest Symptoms of Diseases of the Macula." British Journal of
Ophthalmology 37, page 521.
344 “Let us imagine the dismay of a man who is beginning to lose his central vision and to
suspect with anxiety what the future has in store for him, and is told that the early
detection of macular degenerations is not of great importance, as we can do nothing for
them " Amsler, Marc. 1953. "Earliest Symptoms of Diseases of the Macula." British
Journal of Ophthalmology 37, 521, page 537
218
urging his contemporaries to take the approach of ophthalmologists of the
past, and pay more attention to the subjective symptoms of their patients.
Today, despite criticism of the Amsler Grid as a reliable diagnostic tool (Amsler
himself notes the difficulties inherent in the Grid Tests), and its supersedence
by ultra-sensitive ophthalmic equipment, the Amsler Charts are still very widely
used in ophthalmic practice, and in patient self-monitoring.
In my case, it was the discovery of disturbance in my visual field that brought

me in to the doctor's office, by which time the ‘beaten copper’ appearance of
macular dystrophy was already well established. In light of Amsler’s
considerations, questions still remain – how long had the absence at the centre
of my visual field been there before I consciously noticed it? Given an
understanding of perceptual filling-in, had the scotoma been present for a long
time, concealed by the mechanisms of neural plasticity, until it reached a size
where it could no longer be small enough to contain? I had never heard of an
Amsler Grid at this time – would I have noticed a scotoma or metamorphopsia
if I had been shown one at or before the time of my diagnosis?
Despite criticisms of the Amsler Grid, one of its primary values may be in its
ability to procure the many variations of visual disturbance brought about by
diseases of the macula, rather like the inherent potential of a blank canvas on
an easel.
Amsler’s fourth question in his grid test manual is a compelling argument for
the grid’s function for both art and ophthalmology. It asks the patient: “Is every
small square equal in size and perfectly regular?” To Amsler, the answers were
always infinitely diverse, and he notes one patient answered, “The whole
square is like an un-stretched canvas”.345
219
The grid serves both patient and artist alike, because it catches and maps the
visual perceptions of both in this same space.
While grids have pervaded the practice of art for centuries, and there are many
writings that document its use as a means of translating and scaling images to
various substrates, some texts that discuss the idea of grids in art will be
explored in the following sections, as a way of examining the usefulness of
Amsler’s grid.
6.5 Art and the grid
6.5.1 John Elderfield
Art historian, critic and curator John Elderfield,346 wrote in his 1972 article,
Grids,347 that grids had become (at that point in time), important modes of
organisation in art practice, constituting either structures or frameworks in a
work of art. The grid had become the artwork.
For Elderfield, when a linear surface organisation is visible in a work of art, its
structure reveals that elements other than drawing are operating in its creation.
The grid can be another part of the pictorial component, just like drawing.
Cubism evokes the grid when it exaggerates contrasts of light and dark,
maximising the ‘skeletal aspects’ of traditional painting, placing drawing, and
rectangularity, at the centre of a work’s creation. However, Impressionism can
also, with its attention to surface, evoke the grid, even though it subsumes
Cubism’s attention to drawing, by ‘decentralizing’ the picture surface, making
similar elements repeat themselves over the canvas, in for example a Sol Le Witt
346 See a wonderful presentation by Dr John Elderfield given at the Leeds Alumni lectures
in the UK. It provides a wonderful insight into Elderfield’s art student days in the 1960s
and 70s and a great insight into art criticism, creativity and art history. Here;
https://www.youtube.com/watch?v=-F8k1i9CD1s accessed 21 May 2014
347 Elderfield, John. 1972. "Grids." Artforum 10:52-59.
220
or a Pollock. Both Cubism and more recent derivations of Impressionism use
grids as a structural device, says Elderfield. Thus, what becomes important is
not only the rectangularity but also the reduplicative qualities of the grid.
These two elements can be seen as a mode of organizing visual elements, an

organizational structure that contains visual information.
Illustration 37: Sol LeWitt, Nine-Part Modular Cube, 1977
Baked enamel on aluminum, 219.7 x 219.7 x 219.7 cm, © 2008 The Estate of Sol
LeWitt, Art Institute of Chicago. See an exhibition on LeWitts grids here :
https://www.youtube.com/watch?v=v-7mM9dK6IU
Seen in this light, Amsler’s Grids become organizational structures for visual
perceptions, in much the same way as an artist would use these structures as a
way to organize visual ideas. The repetitive nature of the grid is a way to
counterpoint the changing nature of these perceptions, the duplicative surface
of the grid an attribute to monitor changing visual perceptions. The grid is a
constant against the progressive and dynamic scotoma or metamorphopsia –
without this constant element of the grid, monitoring changing visual
perceptions of the progression of eye disease would be almost impossible.
Elderfield says the grid can be either visible or invisible in a work of art, for
example, an Agnes Martin painting reveals the utter visibility of the grid; if the
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grid was removed there would be no underlying structure to the work, so the
grid does not operate in the service of anything else here – the work is all grid.
Illustration 38: Agnes Martin, Tremolo, 1962
Ink on paper, 25.5 x 28 cm © 2015 Estate of Agnes Martin / Artists Rights Society
(ARS), New York, http://www.moma.org/collection/artist.php?artist
Yet other works of art may use grids as a scaffold, as a structure that operates
in the service of other pictorial qualities, performing a more invisible function
of operation (such as the work of Larry Poon).
The concept of scaffolding can be easily applied to the Amsler Grid – it is a

scaffold on which visual perceptions can be mounted and analysed. A sturdy
structure that can be built upon, a framework that can be departed from, or in
other words, a visual framework that can provide a point of departure. Indeed,
the value of the Amsler Grid as a diagnostic tool is the ability to measure and
monitor how much the patient’s visual perceptions depart from the rigid
unchanging structure of the right angled uniformity of the Amsler Grids – the
departure from the cool order of the grids in counterpoint to the chaos of
central vision loss.
Thus the grid can also be seen as a coherent surface against which the
incoherence of visual disturbances can be pitched.
222
Elderfield also draws a distinction between works of art that work to cohere the
surface of the artwork, or those that work to fracture it. In a similar way the
Amsler Grid can be seen as a visual tool whose coherent surface is fractured by
distortions of visual perception caused by Maculopathy, distortions that can be
clinically measured by the grid itself.
Like the Amsler Grid, Elderfield sees the artist’s grid as the traditional tool for
the measuring and transferring of visual information. When visual elements are
placed into the units of a grid, what is contained there consists of both a
framework, and the information this framework contains. The grid can be a
passive receptacle for containing meaningful forms, or in the case of Mondrian’s
work, signifying forms or cosmic states in themselves.
For Elderfield the grid is ultimately an attribute of the module, with units of
fixed dimension. It has both vertical and horizontal lines, which can be seen as
merely the junctures of these smaller modules. These lines can be seen as
mapping a pre-existing surface, but the grid has both subtractive and
cumulative properties. The lines can either be cutting up the surface in a
subtractive manner, or in a cumulative mode, multiplying the units positioned
within those lines. Both the concepts of dividing and defining, or accumulating
units and areas, have resonance with Amsler’s Grids. The patient is asked
whether they are aware of changes to the thickness of the lines, or the shape
of the right angles, drawing attention to the intersection of the dividing or
defining lines of the Amsler Grid, and at other times, the patient is asked to
become aware of the units themselves – are there shadows or colours or
changes within these units? In other words, attention can be drawn either to
the lines (subtractive, intersecting attention) or an appraisal of the areas within
the grid spaces (accumulative and unitary modes).
In cumulative grids, time can also become a feature, like Andy Warhol’s
repetitions of images, building up in sequence to form meaning. Again these
are temporal qualities, which carry information, characteristics that are shared
with Amsler’s Grids. Thus, the grid is the arena where subjective visual
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perception is transposed onto the objective space – an intersection where
qualitative perception can be mapped, charted, transferred and quantitatively
measured.
6.5.2 Rosalind Krauss
While Elderfield recognizes the grid did not always produce great art (it often
only initiated it), art critic and historian Rosalind Krauss, is particularly scathing
of the grid.
For Krauss, the grid, strident and hostile to narrative and discourse, was brutally
efficient in walling the visual arts into a ‘realm of exclusive visuality’348 against
the intrusion of speech.
Krauss sees the grid as relentless and impervious to change, with qualities that
resist development, while artists throw themselves before ‘its barren aesthetic
ground’.349
Far from Amsler’s beguiling ‘butterfly net’ with which to capture elusive
qualities of visual disturbance, Krauss sees the grid as ‘antinatural, antimimetic
and antireal’.
The grid is emblematically modernist in two ways - spatially and temporally. In

the spatial sense the grid crowds out the dimensions of the real world, replacing
it, unnaturally, with the ‘lateral spread, the single surface’. In this way, the grid
does not imitate the real, but rather imposes an ‘aesthetic decree’. In this way
the natural order is subsumed by a dictatorial aesthetic sense.
In the temporal dimension, the grid, breaking the chains of the continuity of
arts development, declares itself as 'modern', because it seems to have no
precedent in the art of the past.
348 Krauss, Rosalind. 1979. "Grids." October 9.
349 Ibid., 51
224
Unlike Elderfield, Krauss does not see the scaling of perspectival properties in
Renaissance art to have been part of the advent of the grid, because perspective
was the science of the real, not the mode of withdrawal from it. Therefore,
perspective in art was a demonstration of the way reality, and its
representation, could be mapped onto the surface of a painting – there was
always a real-world reference and a relationship between the two.
But the modern grid maps only the surface of the painting itself – it is a transfer
in which nothing changes, except the placement of the physical qualities of the
work of art onto an aesthetic map.
Yet, despite the materialism of the grid, another quality can be found.
For Krauss, Malevich and Mondrian350 do not explore materiality of paint or

surface in their work. For them, the grid is a staircase, a statement about the
intangible qualities of being, mind or spirit, and in this way, says Krauss, the grid
is a paradox.
“The grid’s mythic power is that it makes us able to think we are dealing with
materialism (or sometimes science or logic) while at the same time it provides
us with a release into belief (or illusion of fiction).”351
Krauss declares that it is this quality of the grid, rather than the qualities of its
structure, that endure in art. Moreover, she grants the grid three successes:
quantity, for the sheer volume of those who employ it; quality, for the beautiful
works of minimalist art it has helped create; and ideological success, for its
pervasiveness in modernity.
350 For a discussion of Malevich and Mondrian in relation to neuroscience, see chapters 12
and 13 of Zeki, Semir. Inner vision: an exploration of art and the brain. Oxford : Oxford
University Press, 1999
351 Krauss, Rosalind. 1979. "Grids." October 9.
225
Illustration 39: Piet Mondrian, Victory Boogie Woogie, (1942 - 1944
Oil and Paper on Canvas, 127 cm × 127 cm, Gemeentemuseum, The Hague
If the function of a myth is that it can hold opposing views in suspension, the
grid exemplifies myth. It can hold materiality and spirituality in suspension. But
parallels with Amsler’s Grid can also be found here. On one hand, the grid’s
surface is material, logical, antinatural. On the other hand, we are invited to
endow its space with something intangible – the visual perceptions of our
diseased retinas. There is a continuous paradox or balancing act in this space –
the counter action of the material grid with the ephemeral experience of our
visual perceptions.
Amsler’s Grid is a continuum in a century long line of philosophical and

ophthalmic discourse concerning the gulf between the real world and our
perceptions of it.352 There is a gulf between the actual and the experienced - a
subject that will be explored in the next chapter.) For Krauss, the grid provided
352 Amsler spends quite some time examining the historical evolution of the use of the Grid,
from Reid through to Helmholtz, Landolt and beyond, in its relation to understandings
of perception and optics. See Amsler, Marc. 1953. "Earliest Symptoms of Diseases of the
Macula." British Journal of Ophthalmology 37, 521.
226
a gateway for the 19th Century artists who were also preoccupied with the
mechanisms of visual perception and “…for the artist who wished to enlarge his
understanding of vision in the direction of science, the grid was there as a
matrix of knowledge.”353
Therefore, the grid enabled the separation of perception from that of the real
world,354 (much like Reid had discovered with his musical stave), and for Krauss,
the grid was now an emblem of the infrastructure of vision.
But Krauss also sees qualities like this as pointing to the inherent schizophrenia
of the grid, cheerfully schizophrenic in fact. This may also derive from the fact
the grid is a ‘mutually accessible space’. This can be seen in Amsler’s Grid – it is
at once the realm of the doctor and the patient, the space of the material
surface and the elusive immaterial visual experience, the shared space of the
qualitative experience and the quantitative measurement.
Amsler was meticulous with his approach to measurement - the entire grid is
20° wide, 10° each side of the centre of the macula. When held exactly as
according to instructions, and introduced into the field of vision, the grid
occupies the central area of 10° surrounding the point of fixation, precisely
mapping the most vital area of vision while also avoiding the blind spot that sits
at the optic nerve.355
Thus the Amsler Grid can counterbalance both quantitative and qualitative
inquiry, map objective and subjective space, and operate as a bridge between
the gulf of reality and perception.
353 Krauss, Rosalind. 1979. "Grids." October 9
354 Krauss says by its very abstraction the Greeks conveyed one of the basic laws of
knowledge–the separation of the perceptual screen from that of the real world.
355 See Figure 3, page 525, and Amsler’s accompanying notes in Amsler, Marc. 1953.
"Earliest Symptoms of Diseases of the Macula." British Journal of Ophthalmology 37,
521.
227
It is these qualities – enigmatic, paradoxical, mutually accessible, that
perpetuates the popularity of the Amsler Grid.
Where else does such a space exist?
Where, in our present day health care system, is there space for the patient to
actively express what they see and how they see it? Artist Adam Hahn’s
portraits of macular degeneration, were painted as a response to his curiosity,
driven by his grandmother's blindness, as to what the world looked like through
the eyes of a sufferer.
While Hahn did not use the grid as a basis for his artworks on Age Related
Macular Degeneration, the grid can nonetheless impel the patient, like the
artist, to ask, “What does this look like for me?”
In this way, I disagree with Krauss’ notion of the anti-narrative qualities of the
grid at the simplest level, for Amsler’s Grid is a space in which to draw a
narrative over its surface. At the simplest and most basic level, the grid can offer
a departure point and propulsion into narrative.
6.5.3 Munch’s grids
The Edvard Munch also began using a grid to map the entoptic effects of a
retinal haemorrhage that befell him in 1930, at the age of 67.356 The idea of
recording the visual perceptions caused by his eye disease preceded that of
Amsler’s Grids by some 17 years.
The question will always remain as to whether Munch chose to use grids to map
his scotoma as result of suggestions from his ophthalmologists, or whether his
own instincts as an artist led him to begin using a grid simply because that was
a tool readily present in artistic practice.
228
Appearing to have been at once fascinated and horrified with the changes to
his visual perceptions and the threat of permanent blindness, Munch spent
weeks drawing the entoptic effects of scotomas caused by bleeding in the
retina.357 He observed the changing landscape within his eye under different
light conditions, or on different occasions, such as reading or conversing.
Marmor acknowledged ‘the challenge of self-documentation for an artist who
can’t see the core of his subject.’358 This challenge was a constant and recurring
theme throughout this research project.
Munch’s flowing compositions seem to indicate little use of a grid to scale or

map in other works – The Scream, for example, does not appear to have been
constructed with the use of a grid, and there is a different kind of interpretation
of perspective. As the condition resolved, Munch no longer depicted the
haunting visions of his scotomas over a grid.
357 Munch, Edvard, Angela Lampe, and Clément Chéroux. 2012. Edvard Munch: the modern
eye: London: Tate, 2012. Page 268
This is a catalogue that accompanied an exhibition of Munch’s work featuring depictions

of his eye disease, titled, Munch: The Modern Eye, which was held at The Tate Modern
between 28 June – 14 October 2012, see www.tate.org.uk/whats-on/tate-
modern/exhibition/edvard-munch-modern-eye
10.1016/S0039-6257(99)00113-7.
229
Illustration 40: Edvard Munch drawings of scotoma on a lamp post, and a scotoma with
words, 1930
(The Munch Museum/The Munch Ellingsen Group/ARS, New York 1999)
230
6.5.4 Paul Hackett
Illustration 41: Paul Hackett "8091"
Paul Hackett, “8019” acrylic, graphite, powder pigment, acrylic medium on linen, 61cm x
61cm
As noted in Section 3.4.6, Paul Hackett has investigated the grid and its
implications in art, Gestalt psychology, neuroscience, visual perception and eye
conditions.
Hackett examined his diplopic359 eye condition through the framework of the
Lees Hess recording chart, a grid used to test and measure diplopia. Through a
series of stages, he began employing the use of grids to depict the tundra
landscapes he encountered, noting that the grid also functioned as a map not
only of a real landscape, but also a perceptual landscape of his distorted vision.
Close observation of his own visual impairment, coupled with a desire to
359 Diplopia is a condition causing double vision. It can be a result of corneal, lens, neural or
other factors. See http://www.webmd.com/eye-health/double-vision-diplopia-causes-
symptoms-diagnosis-treatment for a brief description.
231
understand those distortions through neurocognitive understandings drove his
methodology and propelled the creation of his paintings.360
Hackett employed and combined two types of grids within this framework - the
axiomatic grid (two dimensional) and the perspectival grid (three dimensional).
By doubling and overlapping these painted grids, Hackett articulates both two
and three-dimensional planes.361 In light of this multi-faceted interpretation
and use of grids, Hackett disagreed with Krauss’ interpretation of a narrower
figure-ground concept of grids – exploring simultaneously the concept of
surface and depth within the layers of paint. Furthermore, asserts Hackett,
Rosalind Krauss’ predominant view of the grid as a strident anti-natural and
anti-real structure, in which items cannot be arranged, may have been too
extreme a response to the qualities of the grid,362 and that the grid can be better
understood in neuroscientific and neuropsychological terms363.
360 Hackett, Paul. 2014. Fine Art and Perceptual Neuroscience. [electronic resource] : Field
of Vision and the Painted Grid, Explorations in Cognitive Psychology: Hoboken : Taylor
and Francis, 2014. Book Electronic document, page 137
363 See Samir Zeki chapters 12 and 13 for a discussion of the location of cortical cells that
respond to lines and squares, from V1 to V4: Zeki, Semir. 1999. Inner Vision: an
exploration of art and the Brian: Oxford University Press.
232
6.5.5 My art works and the grid
Illustration 42: From a series of grid paintings. 2013
Hackett’s employment of the grid, in tandem with his exploration of his own
diplopia and disturbed visual perceptions has parallels with the researcher’s
investigation of the grid. Whereas Hackett explored the Lees Hess chart, my use
of the Amsler Grid provided in-depth thought and exploration of the symptoms
of vision loss.
Having spent the first year of my research exploring theoretical background, and
completing a number of photographic and animation works, I turned to the
exploration of the grid.
I began with a very simple replication of the Amsler Grid, measuring it exactly
as it appears in the ophthalmic manual - a 10 centimetre square with 20 small
squares across and down the inside of the grid. These were made in Photoshop
and then printed on to heavy digital rag paper.
I replicated the conditions of the eye examination by devising a method of

keeping my head at exactly 28 centimetres – reading distance – from the grid,
which was printed as a small card and placed on an easel. To keep the distance
consistent I used a hat with a stick, which maintained a steady contact with the
card.
Next I mixed white paint onto a brush and, starting from the outside of the card,
I would move the brush into the centre grid, placing the loaded brush down on
233
to the paper at the point where it began to disappear into the scotoma. This
experiment was repeated over three months in order to develop a record of the
changing size of my scotoma.
However, what seemed like a simple exercise proved extremely difficult, as it

was impossible to keep a steady gaze at the fixation point in the centre of the
small card.
After some time with this experiment, I reformatted the Amsler Grid into a
circle, hoping that the concentric rings of the new grids I had formed would
assist in keeping my eyes steady but they did not (refer Illustration 43).
As a result, capturing the changing size of my scotoma became impossible, as it

relied on me steadily holding my gaze while prodding with my brush into the
central field of absence.
Furthermore, the scotoma was too large, obliterating most of the grid pattern
except for the edges. I did however notice a tendency for the scotoma to sit
further up into the top of the grid, which became evident when all the cards
were laid out in a row. I am not sure if this was a result of a habit of eccentric
viewing, in which case I was not marking the scotoma’s boundaries accurately
as my eyes were drifting substantially.
These issues relate to some common concerns about the Amsler Grid, which
were addressed in a study by Lowenstein et al. (2003).364The study focused on
the difference between the Amsler Grid test, and a new computerised method
of testing using a Macular Computerized Psychophysical Test (MCPT), with a
sample of 108 Age Related Macular Degeneration (AMD) patients.
364 Loewenstein, Anat, Rafael Malach, Michaela Goldstein, Igal Leibovitch, Adiel Barak, Eli
Baruch, Yair Alster, Omer Rafaeli, Isaac Avni, and Yuval Yassur. 2003. "Regular article:
Replacing the Amsler grid. A new method for monitoring patients with age-related
macular degeneration11Drs. Loewenstein, Malach, Alster, and Rafael: acknowledge a
financial interest in Notal Vision." Ophthalmology 110:966-970. doi: 10.1016/S0161-
6420(03)00074-5.
234
The authors identified issues with the traditional Amsler Grid test to include a
limited awareness of visual field defects in patients due to the filling-in
phenomenon. This limited awareness may be present until the scotoma is
considerably larger and already includes central vision loss. (This is in contrast
to Amsler's argument that the patient will notice the disturbances first). The
inability to properly maintain fixation while testing the peripheral visual field
was also a significant problem. The ‘crowding effect’ caused by the multiple line
setup reduced sensitivity to testing, while the non-interactive nature of the
traditional Amsler Grid test left results vulnerably influenced by variations in
examination techniques, or examination conditions at the time of monitoring.
Furthermore, there can be a disruption in the retinal pigment epithelium in

AMD causing a shift in the regular position of photoreceptors, and a subsequent
shift in the perceived location of objects.365
The authors concluded that the new method of testing AMD patients with the
MCPT test was superior to the traditional Amsler Grid test for the above
reasons, as the new test was meant to specifically address the perceived
weaknesses of the traditional grid test.
However, these issues themselves raise interesting questions about the original
Amsler Grid test and its dissemination in ophthalmic practice366 and the popular
media, where patients can find take home grids for personal monitoring of their
eye conditions.
365 Loewenstein, Anat, Rafael Malach, Michaela Goldstein, Igal Leibovitch, Adiel Barak, Eli
Baruch, Yair Alster, Omer Rafaeli, Isaac Avni, and Yuval Yassur. 2003. "Regular article:
Replacing the Amsler grid. A new method for monitoring patients with age-related
macular degeneration11Drs. Loewenstein, Malach, Alster, and Rafael: acknowledge a
financial interest in Notal Vision." Ophthalmology 110:966-970. doi: 10.1016/S0161-
6420(03)00074-5.page 967
366 See Augustin, A. J., I. Offermann, J. Lutz, U. Schmidt-Erfurth, and P. Tornambe. 2005. "-
Comparison of the original Amsler grid with the modified Amsler grid - Result for
patients with age-related macular degeneration." - 25 (- 4):- 445. This study found that
using the original Amsler Grid – a black background with white lines, was actually better
in some case.
235
Significantly, some ophthalmic practitioners have asked why the widespread
use of the Amsler Grid test displays a white background and black grid, rather
than the original black background on a white grid as Amsler intended in Chart
No 1.
In a letter to the editors of the journal Eye in 2005, MJ Roper-Hall wrote of a

meeting with Marc Amsler in 1946 in Zurich, at which Amsler emphasized that
his tests should be conducted on a black background with a white grid.
Roper-Hall states that using this type of grid – as originally intended by Amsler,
yielded much better results and overcame some of the issues often raised
against the Amsler Grid test. In the letter, Roper-Hall raised the issue of the
widespread dissemination of black grids on a white background, noting:
“It appears that in recent years, the recording sheets have been given to
patients at risk of macular disturbance asking them to use them at
intervals to observe any distortion of the lines. In my own practice, I have
found that patients with central scotoma or metamorphopsia find
difficulty in appreciating the defect on the recording charts, but do so
easily on the proper white on black charts.”367
In reply to this comment, and also following on from their own investigations
of AMD,368 authors Zaidi et al., also wondered why the black on white
background grid test seemed to have pervaded the practice of Amsler Grid
testing, noting that it may have been due to the cost effectiveness of ink. Zaidi
et al. found that,
367 Roper-Hall, M. J. 2006. "The usefulness of the Amsler chart." Eye (London, England) 20
(4):508; author reply 508-9.
368 Zaidi, F. H., R. Cheong-Leen, E. J. Gair, R. Weir, E. Sharkawi, N. Lee, and K. Gregory-Evans.
2004. "The Amsler chart is of doubtful value in retinal screening for early laser therapy
of sub-retinal membranes. The West London Survey." Eye 18 (5):503-508. doi:
10.1038/sj.eye.6700708.
236
“…the British National Health Service most often uses the Chart No. 1 by
Keeler: a black grid on a white background. In short, our study found this
to be an unsatisfactory test and Professor Amsler’s original comments
may indeed partly explain this. However, we stress that Amsler charts
should continue to be dispensed as they do detect a fair proportion of sub-
retinal membranes (approximately 30% in our study using black on white
charts).”369
In their article, The Amsler chart: absence of evidence is not evidence of

absence, authors Crossland and Rubin also noted the fallibility of Amsler tests,
given, among the factors identified above by Lowenstein et al., the main
contributing factor of perceptual completion or filling-in phenomenon. With the
dissemination of Amsler Charts to those at risk of AMD, the authors, like Amsler
himself, considered early detection to be crucial, but the authors noted that due
to inherent factors in the grid tests, as much as 50 per cent of patients failed to
notice their symptoms at the earliest time.370,371
The authors cited a need for a better test to be introduced as quickly as possible,
which could be as cost effective and simple to use as the Amsler Chart. In the
meantime, until a cheap effective and easily understood test that yields a more
accurate result is developed, the authors advised that the Amsler Chart
369 Zaidi et al reply to Roper-Hall, M. J. 2006. "The usefulness of the Amsler chart." Eye
(London, England) 20 (4):508; author reply 508-9.
370 Crossland, Michael, and Gary Rubin. 2007. "The Amsler chart: absence of evidence is not
evidence of absence." British Journal of Ophthalmology (3):391.
371 In another study, again with AMD patients, researchers discovered as much as 56% of
the subjects had no idea of their own scotomas, even though these were sometimes of
a significant size. See Fletcher, Donald C., Ronald A. Schuchard, and Laura W.
Renninger. 2012. "Patient awareness of binocular central scotoma in age-related
macular degeneration." Optometry And Vision Science: Official Publication Of The
American Academy Of Optometry 89 (9):1395-1398. doi:
10.1097/OPX.0b013e318264cc77.
237
continue to be administered to patients for at-home monitoring with the
accompanying maxim ‘‘absence of evidence is not evidence of absence’’.372
I have subsequently realized that a white grid on a black background is far more
effective in showing my visual disturbance, and that I may have been using
something similar to Chart No. 5 in the Amsler Grid test, as this is the one most
often disseminated by publishers of the grid test book. Crossland and Rubin also
cited further studies in which different coloured backgrounds and grid lines
were employed, in order to find more effective variations on the Amsler Grid. I
also did a series of works using different coloured backgrounds, produced in
Photoshop but not printed on to paper.
Illustration 43: My coloured circular grids, with and without scotoma
Another reason for changing the colour of the backgrounds and grids was to see
if the scotoma or even the visual perceptions changed in character as a result
of a change in colours. The darker background seems to show much more of
the pulsating light effects that accompany my scotoma and distort the grid lines
at the periphery.
372 Crossland, Michael, and Gary Rubin. 2007. "The Amsler chart: absence of evidence is not
evidence of absence." British Journal of Ophthalmology (3):391, page 393
238
However, I realized, as did Lee Allen (refer section 3.4.3 Lee Allen, that a clear
blue sky, and rapid blinking, could reveal the presence of retinal disturbance,
and I did some After Effects works based on this idea.
Illustration 44: Rapid blinking into the scotoma
Despite the difficulties and concerns surrounding the accuracy of Amsler Charts,
it became apparent that a narrative was developing around the grid works I was
making. Despite the failure to produce a comprehensive set of Amsler Grid
inspired cards with a precisely mapped scotoma, I had still learned much from
my experiments.
Exploring the historic development of the ophthalmic grid and reviewing the
literature by Amsler and others concerning the grid proved highly beneficial in
my research project.
I realised Amsler’s Grid formed part of a larger dialogue around visual

perception and the organization of visual space, which in turn influenced my
239
approach to art making. As Hannah Higgins explains in her book Grids373, the
grid is a concept that stretches from the ‘Palaeolithic brick’ to the World Wide
Web, with a multitude of manifestations, and we can place the enduring
benefits of Amsler’s Grid, and future developments of it, somewhere along that
continuum.
I have noted how exquisitely disruptive the entoptic effects of the disease are
over the dispassionate order of the grid. If the grid is ordered, controlled, space,
the scotoma and metamorphopsia are anarchic, destructive, resisting any will
to order. It is the juxtaposition and the counterpoint between the grid and its
perception by the diseased eye, that is valuable in understanding vision loss.
How can we determine how far the perceptions caused by diseases of the eye
depart from the structure of Amsler’s Grid, if there is no structure to depart
from? For Hannah Higgins, chaos requires an organizing principle, something to
be referenced against, or to butt up against.374 Without the grid, the distance
between order (grid) and chaos (vision loss) cannot be measured. This is
precisely the benefit of the Amsler Grid.
As an extension of the involvement of time in visual perception, Higgins explains

the role of the grid in spacetime. In this case, the grid exists, but only relatively.
Since Einstein’s 1919 theory of relativity, space and time can no longer be
understood as independent fixed coordinates, and the implication is that we
cannot talk about perspective or perception without an acknowledgment that
these are illusory. Higgins writes:
“Since the advent of space time, one can no longer speak intelligently
about the realism of perspective or the absolute reality of the visible world
which perspective made a pretence of representing. Neither can
373 Higgins, Hannah. 2009. The grid book: Cambridge, Mass.: MIT Press, c2009.
Bibliographies Non-fiction.
374 Ibid., 257
240
assumptions be made about the absolute exclusively spatial or temporal
nature of any artistic medium – as many proponents of modernism would
attempt. In a space time world, one dimension, two, three, and four are
merely relative, each knowable only in abstract terms through the
dimension succeeding it. We use two dimensions (a plane or sheet of
paper) to see one (a line), three dimensions (a cube) to draw the line and
point, four dimensions (time) to understand three (as we move around a
cube, a line and a point) and a fifth (space time) to understand space and
time.”375
This brings us to the final points in this discussion of Amsler’s Grids, grids in art,
the concept of grids as organizing structure, and the making of art works in this
project.
Early in my research, I understood that it was the mechanisms of visual

perception that interplayed with the entoptic effects of macular dystrophy in
my visual field. Vision was something I was constructing, and if there were
deficiencies due to my vision loss, it was my brain actively engaged in
compensation, that created new visions in turn.
One of the theories of visual perception is that human vision can be understood
as a cumulative biological process that evolves over evolutionary and individual
time.376 As such, neural development depends on repetition and organization
into ‘units’, which are tested and refined empirically. At some point, this echoed
my ruminations on the grid, and a new approach to art making was formed. In
this new approach, artistic compositions could mimic both how I was perceiving
375 Higgins, Hannah. 2009. The grid book: Cambridge, Mass. : MIT Press, c2009.
376 The concept of empirical theories of vision will be covered in chapter 7, Visual
Perception, in particular examining the work of Purves and Lotto. See Purves, Dale, and
R. Beau Lotto. 2011. Why we see what we do redux: a wholly empirical theory of vision
/ Dale Purves, R. Beau Lotto: Sunderland, Mass: Sinauer Associates, 2011. Bibliographies
Non-fiction
241
and constructing my visual world, and how visual perception itself might also
function. The cumulative, repetitive and constructive elements of grids could
inform my work in this way, while also echoing the processes of empirical vision.
6.6 Chapter summary
This chapter examined some of the characteristics of grids, within the context
of both art and ophthalmology. The historic connection between grids, visual
perception and eye disease was outlined, followed by an investigation of the
Amsler Grid, and its use in ophthalmic practice and detection of macular
disease.
In this context the more qualitative aspects of the Amsler Grid were observed.
John Elderfield and Rosalind Krauss offered counterpoints to notions of the
utility of the grid in art. This was also examined in contrast with the Amsler Grid,
establishing some links between ophthalmology and art through the grid
structure. This was further underscored by an examination of Edvard Munch
and the work of Paul Hackett, and how the grid was employed to capture the
visual manifestations of their eye diseases.
Given an exploration of some of the qualities of grids, consideration was given

as to how both the ophthalmic grid and the grid as an artistic structure
impacted my research project. Further outcomes of this discussion included
some of the issues concerning the Amsler Grid, and its ability to detect eye
disease.
Finally, the grid was explored as a means by which further work was produced,
within the context of theories of visual perception, and this will be considered
in the following chapter.
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7 Visual Perception
This chapter examines some of the current understandings of the processes of

human vision and theories of visual perception. It begins with the discoveries
of receptive fields by Hubel and Wiesel, and follows the threads of their findings
into theories of visual perception, predominantly focusing on an empirical
theory of vision, as proposed by Purves, Lotto and others, who are undertaking
current research into visual perception from a neuroscientific perspective.
Understanding the processes of vision and visual perception, and how they
relate to my experience of central vision loss, has been essential to this research
project.
7.2 The processes of human vision
It’s summer time and I’m about to do something inadvisable for most people,
let alone those with vision loss. I am perched very high upon a ladder, with a
large pair of shears, trimming a tall tree.
I scan the scene with my peripheral vision, trying to find the branch that needs
to be cut, searching for the colour and shape that will identify wood in a canopy
of green leaves. I raise the blades upwards, against the blue sky, tapping with
the giant scissors, until I feel the branch. Once the branch has been located, I
can see where it has formed on the trunk of the tree, and I follow this line with
my peripheral vision. The precise point at where it needs to be cut is not seen.
This is concealed by the scotoma, and filled by what I perceive to be a patch of
blue sky. But in my mind’s eye, I have visualised and estimated the position of
the branch, its length, width, how far I need to open my scissors, and where I
need to position myself in order to reach it. Then I open the scissors and chop.
Eventually the entire job is done. I haven’t fallen off the ladder, lost my balance,
243
or inadvertently chopped off my arm, but I have learned, yet again, that
something other than my retina alone has played a major part in my actions.
The following section explores the ‘something other’ involved in vision: visual
perception; awareness; and consciousness, and considers how they relate to
my experience of central vision loss.
7.2.1 Receptive fields
When stimuli in the form of heat, light, sound, touch, taste and smell come in
from the outside world, they are detected by our input, or receptor cells, which
are found in the skin, nose, eyes, ears and other parts of the body.
These sensory cells convert information into neural signals, in a process known
as transduction, and pass this information along to other cells further up the
pathway.
All sensory areas of the body are mapped out topographically onto specific
areas of the brain, a phenomenon known as the ‘somatotopic map.’377
Furthermore, some of these sensory areas are given greater representation in
the brain than others, which is known as the cortical magnification factor. This
reflects the fact that more sensory receptors are concentrated in those areas,
(fingertips, lips and retina for example), thus requiring more brain tissue for
processing.
As the input signals are received, neurons pass information along both excitory
and inhibitory channels through the central nervous system, in a converging and
diverging manner, sending output signals further and further up the chain, until
the signals reach particular areas of the brain, which then mobilises the system
377 Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen: an exploration of conscious
and unconscious vision / Melvyn A. Goodale and A. David Milner: Oxford ; New York :
Oxford University Press, 2004. Bibliographies Non-fiction. See also a nice explanation
by the Khan Academy here: http://www.khanacademy.org/science/health-and-
medicine/nervous-system-and-sensory-infor/somatosensation-2014-03-
27T18:45:57.777Z/v/somatosensory-homunculus accessed 9 May 2014
244
for action and response. In the visual system, the retina and its photoreceptor
cells are receptive, and pass information to the ganglion cells, which pass
information through to the optic nerve which then goes to the lateral
gesticulate body (LGN), which then sends its output to the striate cortex. Thus
all perception can be seen within a system of sensory input and transduction,
the stimulation or inhibition of receptive fields of cells, and interpretation by
the brain.378
For neurophysiologist David Hubel, it is the central nervous system, linking all
this excitory and inhibitory neuronal activity, that is ultimately responsible for
both our consciousness and our souls,379 adding that, if one day we can
understand how the brain transforms and translates the signals of these cells,
we may “not need the word mind at all.”380
Hubel, together with his colleague Torsten Wiesel, conducted Nobel Prize
winning research on vision. During their work in the 1950s, 60s and 70s,
following experiments on the primary visual cortex of cats, they identified that
there are both simple and complex cells in the visual system of the brain, and
that different types of cells each respond to very specific stimuli. These neurons
each have a receptive field - a small area of the retina where a visual stimulus
can trigger the firing of electrical signals (an action potential), and this neurone
will only fire if given the stimulus that they are encoded for within their own
particular receptive field. Therefore, as a result of encoding, some cells respond
only to light-dark contours, or to very particular orientations or angles, while
others respond to edges, and still others to movement, depth, direction, colour,
objects and so on.
378 For a concise summary of the processes involved see the lectures on the visual system
and visual perception at https://www.youtube.com/watch?v=tBjOCxRM_RY
380 Ibid., 61
245
Moreover, as seen above, these cells are systematically organised, or
retintoptically mapped out onto the cortical surface of the brain, to precisely
correspond with the visual stimuli received by the retina. In line with the cortical
magnification factor, a good deal more area is given to the central part of the
retina than to the periphery, indicating the biological importance given to visual
acuity in humans.
These discoveries built on, and pushed forward, our understanding of the visual
system, that had been under examination by scientists the world over for many
years.381,382
From these findings and others, it can be concluded that vision does not come
to us as a complete representation of the outer world, but is rather constructed
and interpreted within and between different areas of the visual brain. This
understanding of the way vision works forms the basis of extensive ongoing
research.
Visual signals are transmitted along the optic nerve of each eye to the brain.
Whilst signals from each eye are transmitted discretely along their
corresponding optic nerve, they diverge at the optic chiasm, which distributes
the visual signals to various areas of the brain. From the optic chiasm, two
separate optic tracts form again, dispersing some signals into: areas devoted to
circadian rhythms and pupillary reflexes; the two lateral geniculate nuclei (LGN);
the superior colliculus which co-ordinates head and eye movement; the optic
radiations; the primary visual cortex, also known as V1; other areas known as
381 See also Hubel, David H. 1963. "The Visual Cortex of the Brain." Scientific American 209
(5):54.
382 See also Ravin, James G. 2011. "Is medical history still relevant to today's
ophthalmologist?" Archives of Ophthalmology 129 (7):941-942. doi:
10.1001/archophthalmol.2011.170, for a breathtaking roundup of the historic
discoveries in ophthalmology that propelled our understanding of vision, and science
in general.
246
V2 through to V6; and the parietal and temporal lobes, all of which are located
at the back half of the brain.
Figure 8: Diagram of visual system
http://www.jjkvc.org/#!Labled%20drawing%20of%20the%20visual%20system%20within%20t
he%20brain./zoom/c1hdj/c1w62http://www.jjkvc.org/#!Labled%20drawing%20of%20the%20
visual%20system%20within%20the%20brain./zoom/c1hdj/c1w62
Thus, a good deal of our brains, approximately one third, is devoted to vision.
The brain must take in a two-dimensional array of stimulus on the retina and
convert it into a three-dimensional understanding of the visual scene. Research
into the visual cortex is being undertaken, which underscores the fact that
perception is not a passive phenomenon occurring at the retinal level, but is
rather an active process, occurring within and between a complex network of
neurons dedicated to specific and interrelated tasks. Investigating the visual
cortex of the brain will give further clues to visual perception, as will be
discussed later in this chapter.
247
In the 1950s Stephen Kuffler, researching the retina of cats, at the Johns Hopkins
Hospital, discovered that some processing of visual stimuli takes place, not just
in the brain, but in the nerve cells of the retina. Kuffler was also one of the first
to recognize that, although retinal ganglion cells continue to fire at a steady rate
even if there is no stimulation, they could be either excited or inhibited by very
specific stimuli. There were basically two types of ganglion cells, each with
circular receptive fields383 with an ‘on’ centre and an ‘off’ periphery, or vice
versa.384 These receptive fields could be mutually antagonistic, accounting for
the firing or diminishing of activity given specific stimuli to a certain area or
another.
Hubel and Wiesel began further investigations following on from the work of
Kuffler and others, using very refined electrodes on lightly anaesthetized cats,
to probe the neural responses of cells further up into the visual system.
383 A receptive field is defined as the area of visual space and its response characteristics
that a neuron is sensitive to
384 See Hubel’s discussion of Kuffler’s, and his own work, regarding receptive cell properties
in the visual cortex of the brain, on page 40 of Hubel, David H. 1988. Eye, brain, and
vision / David H. Hubel, Scientific American Library series: no. 22: New York: Scientific
American Library: Distributed by W.H. Freeman, c1988. Bibliographies Non-fiction.
See also the seminal article by Hubel and Wiesel reproduced in 50 year celebration of
their work, Hubel, D. H., and T. N. Wiesel. 2009. "- Republication of The Journal of
Physiology (1959) 148, 574-591: Receptive fields of single neurones in the cat's striate
cortex." - 587 (- 12):- 2732.
248
Figure 9: Diagram showing paths of visual system from each eye
Image from Purves, Dale. Brains: how they seem to work / Dale Purves. n.p: Upper Saddle
River, N.J: FT Press Science, 2010. Harvard Library Bibliographic Dataset
A general understanding of visual perception was that the areas of V1 and

upwards were thought to be where perceptual processing occurs. Furthermore,
sensory input was considered to be a direct representation of features in the
world. This understanding changed as the discoveries of Hubel, Wiesel and
others continued over time.
What Hubel and Wiesel did was to continue up the path of higher order visual
processing, first in the cat and then in the primate, finding as they went the
specific receptive field properties of individual neurons, until eventually more
and more specific receptive fields that trigger to very specific features in the
world, such as light and dark orientations, edges, colours etc. were
249
discovered.385 Hubel and Wiesel discovered that while light/dark contours are
probably the most important factor in visual perception, they are not the only
major components. Many cortical cells in the visual system of the brain are also
wired for movement detection because the detection of movement in the
natural world is vital to survival. In Eye Brain and Vision,386 Hubel notes that
when we see, our two eyes fixate on an object, place that image on our fovea,
and hold that position for perhaps half a second, then our eyes move to a new
position either by noting a contrast with the background, or noting a changed
shape. This is not done in a smooth motion, but in a jump, known as a saccade,
a jolting movement that goes undetected by the visual system. In viewing a
scene or even reading, our eyes jump from point to point, yet these actions
seem smooth and integrated, and we are largely unaware of our saccadic
movement.387
With stationary scenes, our eyes still move in micro saccades of about 3 per
second. We can never keep our eyes absolutely locked and fixated on a
stationary point. Studies found that if an object was artificially stabilised so that
there were no movements relative to the retina, vision would fade away after
about a second and the scene would become blank.388 This shows how
movement dependent our vision is.
Even if a cell in the brain responds to visual stimuli, it does not mean that it
plays a direct part in perception. Some of these may have more to do with eye
movement, focusing or constriction of the pupils. However, many parts of the
c1988. Bibliographies Non-fiction, page 85. There are also other specific cells in the
striate cortex called end-stopped cells, which are sensitive to corners, curvature and
sudden breaks in lines. See page 85 of the above publication.
386 Ibid., 79
387 Ibid., 78 - 79
388 Ibid., 81
250
striate cortex do play a role in perception, and if some parts of these are
damaged, then there will be a loss in visual perception.
Hubel and Wiesel also made significant contributions to the understanding of

the developing visual cortex, using kittens and cats. They showed that early
blindness in a kitten affected its development even after vision was restored,
but that late onset blindness (in an adult cat) did not affect the adult visual
cortex.
Hubel notes that the primary visual cortex is immensely complex and elaborate,
with different layers and different cells sending and accepting input to and from
other visual areas of the brain. Therefore, it must be understood that visual
information is processed piece by piece in segments, where the brain sends
signals back and forth across areas of the visual cortex. As Hubel noted, the
primary visual cortex cannot be where whole objects – faces, etc. are
recognized, perceived or handled in their entirety, it cannot be where
perception resides.389 This pattern of activity in the cortex is not a direct
reproduction of the outside world, but rather a complex network of analysis
that is continuously constructing perception.390
7.3 An empirical theory of visual perception
Note: the significant portion of this section (7.3) is derived from an unpublished
paper submitted by the researcher as a component of prior study (an online
short course, conducted by Prof Dale Purves at Duke University in 2014).
390 See also Zeki, Semir. 1993. A vision of the brain: Oxford; Boston: Blackwell Scientific
Publications, c1993 (1994 printing). Catalogs Non-fiction, for a very thorough
examination of the visual brain in neurological terms. Zeki was responsible for the
discovery of cortical motion receptive fields in the visual cortex, and has written
extensively of the relationship between art and neuroscience.
251
Hubel and Wiesel’s ground breaking work on receptive fields, however, did not
solve a very glaring problem that goes to the heart of visual perception.391
In human vision, actual reality in the physical world cannot be tracked

backwards from the stimulus received by the retina. What the eye sees is
always influenced by many factors, including luminance, reflectance and
transmittance, which cannot be untangled from retinal stimulus. This is called
the inverse optics problem,392 and it makes redundant the idea that perception
arises from feature detecting neural mechanisms that are disseminated and
reassembled in the visual cortex as a thoroughly reliable representation of
external reality.
The fundamental problem is that the visual system, deriving its input from a
retina, can never know the real world sources of a retinal stimulus, which can
arise from any number of sources, and from many combinations of physical
parameters in the world.393 All perceived visual input is a subjective impression
of the world, and is inherently ambiguous and unknowable.394
391 Purves, Dale, and R. Beau Lotto. 2011. Why we see what we do redux: a wholly empirical
theory of vision / Dale Purves, R. Beau Lotto: Sunderland, Mass: Sinauer Associates,
2011. Bibliographies Non-fiction., page 3
th
392 The Inverse Optics Problem was introduced by George Berkley in the 18 Century, who
noted that an image perceived by the retina could have been generated by any number
of variables.
393 For a comprehensive view of Empirical theories of vision in terms of real world survival
see Purves, Dale, Brian B. Monson, Janani Sundararajan, and William T. Wojtach. 2014.
"How biological vision succeeds in the physical world." Proceedings of the National
Academy of Sciences of the United States (13):4750. doi: 10.1073/pnas.1311309111
394 See Duke University Visual Perception Course with Prof Dale Purves, lecture 1.3 ‘ Why
we don’t see the world the way it really is: The Inverse Problem’, at
https://www.coursera.org/course/visualpercepbrain
252
Figure 10: The Inverse Problem
Any red line could look the same to the retina. See Purves lab imge from
http://www.purveslab.net/research/
An example of this can be illustrated using two of the perceptual qualities that
the retina detects – the qualities of lightness and brightness (other qualities
include colour, geometric forms, motion, size and depth perception). Lightness
and brightness are fundamentally important for visual animals in order to be
able to discern light from dark. Lightness can be thought of as the appearance
of a surface that reflects light (a sheet of white paper for example), and
brightness as the appearance of a source of light (the light bulb that illuminates
the room in which we see the piece of paper). Once again, these are perceptual
qualities that can be detected by the retina, and the retina cannot measure
these perceptual qualities. The observer must be asked how these qualities
might appear to them. However, both these qualities are associated with a
measurable parameter known as luminance. Luminance refers to the amount
of light energy given to a source, and can be measured by a photometer.
If our retinas, neurons and receptive fields track reality, then there should be a
consistent correlation between lightness, brightness and their luminance. But
this is not the case, as evidenced by the following simple example.
Two grey squares sit side by side. They appear to be identical and they are,
because their degree of lightness or brightness can be measured using a
253
photometer to register their luminance. When each of these grey squares is
placed into a variable surround - one with a darker surround, the other with a
lighter surround, their perceived lightness now appears different.
Figure 11: Grey squares illusion
Adapted from Purves Lotto grey squares illusion
How the brain has to deal with the inherent ambiguity of retinal input all the
time can be shown with any number of optical ‘illusions’. The above example is
called the ‘simulated brightness contrast’ and there are many more examples,
such as White’s 'illusion', the Craik O’Brien Cornsweet Edge and Mach bands.395.
395 For a discussion of this effect see, Purves, Dale, and R. Beau Lotto. 2011. Why we see
what we do redux: a wholly empirical theory of vision / Dale Purves, R. Beau Lotto:
Sunderland, Mass: Sinauer Associates, 2011. Bibliographies Non-fiction, page 29 and 33
254
Figure 12: An example of the Craik-O'Brien-Cornsweet Effect.
Test the illusion by placing your finger over the area where the two different grey squares
meet – you will find the two grey squares are actually of the same luminance values. For
explanations of this perceptual illusion see http://www.lottolab.org/articles/cornsweet.asp
and http://www.purveslab.net/research/explanation/brightness/cornsweet.html
The Checker Shadow Illusion396 developed by Ted Adelson at MIT once again
demonstrates how perception is different to retinal input.
396 http://www.businessballs.com/shadow-optical-illusion.htm
accessed 30 April 2014
see also a visual demonstration of this illusion at:
http://whyevolutionistrue.wordpress.com/2011/01/08/do-we-perceive-reality-the-
checker-shadow-illusion/
accessed 11 May 2014 and Ted Adelson website at
http://persci.mit.edu/people/adelson
accessed 11 May 2014
also interactive movies based on a paper by Ted Adelson
http://web.mit.edu/persci/gaz/gaz-teaching/index.html
255
Figure 13: The Checker Shadow Illusion developed by Ted Adelson.
Squares A and B are actually of the same luminance value – that is they are exactly the same,
but appear to be different due to the ‘shadow’ effect. (Note that, if a painter was to paint this
illusion, after some time of trial and error in trying to find what grey tone would match these
two squares, he or she would realize that squares A and B are in fact the same luminance.
Realist painters often come to such realizations when trying to find tones and colours in the
shadows of subjects they are depicting.) See
http://web.mit.edu/persci/people/adelson/checkershadow_illusion.html
See also a ‘live’ demonstration of the illusion at

https://www.youtube.com/watch?v=z9Sen1HTu5o
In the example of the Checker Shadow Illusion, square A and square B may be
perceived to have different levels of luminance. Yet they are actually identical.
While the retina will take in the exact same wavelength of light from those two
squares, our brains will make inferences based on many contextual factors (such
as a dark square in a light shadow, a light shadow and a dark square, and so on),
to come to a conclusion.
Figure 14: The Rubik’s Cube coloured squares illusion
In this demonstration the squares in the Rubik's cube appear to be either yellow or blue, but
when they are isolated from their contexts, they are revealed to be grey.
Source: http://www.lottolab.org/articles/illusionsoflight.asp
256
For Dale Purves it was the plethora of visual illusions emerging from the
laboratories of vision scientists in the 1990s that alerted him to the disconnect
between the receptive field schema of visual perception, and the questions
these ‘illusions’ were raising about visual perception itself.397
These ‘visual illusions’ were possibly not illusions at all, but evidence of the
visual brain’s evolutionary work-around of the inverse problem, and the huge
challenges it presents to real world survival. Purves’ and Lotto’s empirical
theory of vision argues that the human visual system has evolved not as a
mechanism that tracks physical reality, but rather, as a system based on trial
and error behavioural responses to retinal stimuli, for the purpose of
reproductive and species success, over the course of evolution, and within
individual lifetime experience.
The inverse optics problem proves that visual stimuli cannot provide
information about the outside world, and many experiments have been
conducted to prove this case. But the problem for visual animals is that they
need to know as quickly and accurately as possible, what it is they are seeing
and to take action on that information. They need to know the specific
parameters underlying the stimulus they are witnessing, in order to guide
successful survival-driven behaviours. This must include an interchange
between visual stimuli, visual processing and perception. How can this be
explained in an empirical theory of visual perception?
In an evolutionary theory of vision, it may be that images are not processed as

an entire set of stimuli to be apprehended by the brain, as entire scenes may
be fleeting in nature and never seen again; the stimulus that hits the fovea of
each eye at any given moment in time is entirely unique to that moment in time.
Instead, the visual brain, both over the course of evolution, and through a
397 See Purves, Dale. Brains: how they seem to work / Dale Purves. n.p.: Upper Saddle River,
N.J: FT Press Science, c2010., 2010. Harvard Library Bibliographic Dataset, chapter 8
257
lifetime of learning to see, may process images as a repetition of small simple
patterns, which are broken down into their elements and applied to any new
set of visual stimuli that the species or the individual may encounter.398 Thus,
over evolutionary and individual time, the neuroplasticity, and subsequent
progressive modification of the visual brain in relation to the frequency of
occurrence of stimuli and their contexts, may generate appropriate behaviours
that circumvent the inverse problem.399
The evolutionary argument for the perception of lightness and brightness

becomes one that tracks contexts and frequencies of occurrence which are
tested by trial and error behaviour in the real world for the purposes of
reproductive success, rather than actual luminance values, thereby
circumnavigating the inverse problem. That is, both consciously and
unconsciously, processes are underway in which the visual system is constantly
contextualising and extrapolating the likelihood of the cause of something that
it perceives in the visual environment.
These same principles may be applied to all other visually perceived qualities as
mentioned above, including form, movement, colour, size, etc. In the empirical
theory of vision proposed and explored by Purves and Lotto, vision and the
visual system can only be understood in terms of the empirical processes that
link images with trial and error interactions with the environment. All
perceptual responses to stimuli in the environment are reflexive, having been
formed as a result of circuitry already in place over evolutionary and individual
time. Perceptual processing, seen in a biological loop, is therefore historically,
and not logically, derived.
398 See Dale Purves Lecture No. 4.4 “ An Empirical Explanation Based on Reproductive
Success” in ‘Visual Perception and the Brain” Duke University online course,
https://www.coursera.org/course/visualpercepbrain
lectures can be seen at:
https://class.coursera.org/visualpercepbrain-002/lecture/preview
399 Purves, Dale, William T. Wojtach, and R. Beau Lotto. 2011. "Understanding vision in
wholly empirical terms." 15588, page 2 of 8
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7.4 Exploring the brain with visual illusion
The work of Purves, Lotto and others has been further investigated using
Functional Magnetic Resonance Imaging (fMRI),400 and Behavioural Psychology
to examine where perception might take place.401
Psychologist Dr Scott Murray notes that while the subjective experience of

vision seems to be accomplished with apparent ease, the brain faces a ‘very
difficult set of computational problems’, 402 which requires a vast amount of
dedicated brain space to fulfil the task, which is possibly why, given conservative
estimates, at least one third of our brains are devoted to visual processing.
While vision begins when light hits an object, triggering responses on the
retina, the visual system of the brain has to make inferences all the time about
the input it is receiving. Murray shows that optical ‘illusions’ prove the brain is
constantly making judgements based on the context of the images it is
receiving. Thus our visual system is not designed to merely receive a replica of
the visual world, but rather, is designed to understand other properties
(darkness, wetness, shininess, size, etc.) that pertain to the viewed object. In
other words, visual perception is not the brain’s interpretation of the retinal
input it receives from the outside world, visual perception is the interpretation
of the cause of the retinal input our brains receive from the outside world.
400 fMRI (functional magnetic resonance imaging) measures changes in blood flow in the
brain which can be used as a proxy for neurological activity. See also a BBC article on
the limits of fMRI, but also on studies into consciousness, which can be linked with
Susan Greenfield’s theories of consciousness and brain activity.
http://www.bbc.com/news/science-environment-27221632 accessed 1 May 2014
401 The following link is a lecture by Dr Scott Murray on visual perception

https://www.youtube.com/watch?v=6qd9iKIuSvs accessed 29 April 2014
402 Scott Murray, Associate Professor, Department of

PsychologyHomePagehttp://depts.washington.edu/behneuro/people/faculty/murray.s
html and also http://www.gocognitive.net/
259
Murray used simple visual stimuli, incorporating fMRI, to show how, and where,
the retinal signals are transforming into visual perceptions. This can be
particularly evident when exploring how the visual system uses ambiguous two-
dimensional retinal information to infer the properties of unambiguous
representations in the real world, and then match these neural representations
to previously seen objects. Like the simple grey square illusion discussed above
(refer Figure 11) that dealt with the perceptions of brightness and lightness, the
perceptions of size, colour, and other qualities also subject to perceptual
ambiguity, can be tested using neuroscientific techniques.
The perception of object size is a case in point. The retina itself can tell us
nothing about the real world size of an object, and once again the visual brain
is faced with the inverse problem - perceptions cannot be tracked back to the
reality of something in the real world simply through the operations of the
retina. Therefore, it is the brain that has to make the decisions about the real
world size of an object, and it has to use certain strategies in order to do so.
Some of these strategies include contextual cues, such as perspective and
distance, to determine the likely size of the object the retina is viewing. If the
image of a tree is projected onto our retina, that tree could be a small tree very
close to us, or a large tree very far away from us, and without other cues to
guide us, it would be difficult to know the actual size of the tree, given the input
from our retinas alone. What our visual perceptions are designed to do is to
estimate, as accurately as possible, the real world size of the tree – in order to
know the cause of the retinal input being perceived.
How does the brain deal with the ambiguity it is facing about the perceptions
of size? Murray explored this question by presenting subjects with an image of
a checked ring on a grey square.403
403 The following description of experiments conducted by Murray are from the following
lecture given by Murray on visual perception:
https://www.youtube.com/watch?v=6qd9iKIuSvs accessed 29 April 2014
260
When the size and position of the ring changed, Murray measured how the
blood flow or neural activity changed using fMRI. A small ring at the centre of
the visual field correspondingly showed a small patch right at the back of V1,
and as the ring got bigger, the area of stimulation moved further toward the
front of the brain, and showed a larger area of activity, indicating that there was
a corresponding spatial organisation happening in the brain, an ‘activity
distribution’ as would be expected with the retinotopic map.
Next, Murray showed images of different sizes using circular checkerboards,

again noting the relationship between visual space and the corresponding
cortical organization occurring in V1. All these experiments were, up to this
point, in a two-dimensional context. Then Murray tried a three-dimensional
context in which he placed two same sized white balls, within a three-
dimensional context, using an image that appeared much like a very small brick
lined alleyway. Even though the balls were exactly the same size, they appeared
to be different sizes, because of their perspectival contexts. One of the balls
appeared to be closer to the viewer, while the other seemed to be further away.
This was because the perspectival lines within which the balls were placed
seemed to converge behind the second ball.
Once again, like in the two-dimensional ring experiments, Murray could observe
where the brain placed its perception of size within the areas of V1. Murray
named this the ‘retinal size illusion’, demonstrating the inability of the visual
brain to overcome depth information when making judgements about retinal
size.
These experiments also show that three-dimensional cues or context reside in

the area of V1, and this takes place very early on in the visual path. Crucially,
Murray showed that V1 follows perception, as it makes inferences about size
and depth, which contradicts the dominant view that V1 is just an area of the
brain that collects images, and that therefore, there are feedback and feed
forward loops and remapping occurring even at the earliest stages of visual
processing.
261
For Murray, these experiments also show that perceptions concerning size and
distance are not always under our wilful control - we will always see them
differently than what they actually are, and that these dominating visual
percepts are very real to our brains. Above all, the area of V1 follows our
perceptions and not the retinal input – there is a direct relationship between
perceived size and the cortical areas activated at the earliest stages in the visual
system, something that would not be occurring if our brains were only
processing retinal input at the area of V1.
There may be further implications for an empirical theory of visual perception,

that impact on our understanding of the development and organization of the
human visual system.
Melvyn Goodale and David Milner404 worked on the exploration of two distinct
visual systems - one based on perceiving, the other on motor activity. In this
schema, for example, visual processing might do two simultaneous things in
once – one where the viewer will see or ‘perceive’ the cup on the table, and the
other where the viewer will use visual cues to ‘pick up’ the cup. Two different
parts of the brain will be engaged in these two activities - vision for perception,
and vision for action, governed, respectively, by the ventral stream (positioned
at the bottom of the occipital lobe), and by the dorsal stream, (which runs up
over the V1 area of the brain). In this respect, Goodale and Milner see that
vision is not a simulacrum of the external world, and not just a picture in our
heads, but rather, is an evolutionary tool designed for the distal control of
movement.405
404 See Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen: an exploration of
conscious and unconscious vision / Melvyn A. Goodale and A. David Milner: Oxford; New
York: Oxford University Press, 2004. Bibliographies
Non-fiction.
See also Goodale lecture at this address:
https://www.youtube.com/watch?v=0JHoK74pnIc
405 Additional reading on ‘Dee’ in Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen:
an exploration of conscious and unconscious vision / Melvyn A. Goodale and A. David
262
These discoveries were based on experiments with patients whose visual
systems were damaged in unusual ways. Goodale and Milner were called to
examine a patient, ‘Dee’, whose ventral stream occipital lobe was damaged in
an unusual accident. This patient could not detect or perceive forms, even those
as simple as a pencil, cup, or block of wood, nor could she recognise these same
objects in line drawings, which is essentially a distillation of the form of three-
dimensional objects. This type of blindness is called ‘visual form agnosia.’
If given the task of drawing the objects, even this could not be successfully
achieved, although some elements might make their way to the paper in a
disassociated way. Dee could however, draw these forms from memory, even
though she could not recognise the shapes of the objects she was drawing.
What she could recognise though, was a perception of the material these
objects were made from. For example, Dee could not understand she was
looking at a flashlight, but she could see what it was made from - aluminium,
plastic, etc. perceiving its surface qualities and colour, but never recognising the
form of a flashlight. Coupled with this visual form agnosia was the inability to
recognise vertical, horizontal, or slanted orientations - they too had
disappeared along with the registration of form.
Yet Goodale and his colleagues were amazed to see that one day, as they were
conducting experiments with the patient in their lab, Dee reached out to grasp
the pencil that was being held in front of her, with perfect orientation and
precision.
How could she do this, but still not be able to perceive the pencil and its form?
Goodale and Milner began a series of experiments to uncover the mystery. They
developed a slot experiment where Dee had to ‘post letters’ into a slotted box,
which could be moved into different orientations - vertical, horizontal, diagonal,
Milner: Oxford; New York : Oxford University Press, 2004. Bibliographies Non-fiction,
particularly the first two chapters.
263
and so forth. Each time, their patient performed perfectly, as anyone with good
vision would, except that she could not see those angles at all. Goodale and co-
workers realised that while one part of her visual system had been damaged -
the perceptual area governed by the ventral stream, the other area, the dorsal
stream that governs movement, had remained perfectly intact.
Thus, damage to the ventral stream can cause a loss of perception, but not loss
of vision to action, while, conversely, damage to the dorsal stream can cause
optic ataxia, or vision to action problems, and this is exactly what has been
noted in a condition called ‘optic ataxia’ which generates problems in visually
guided reaching.406 As seen earlier, Hubel had also noted that many cortical cells
are wired for movement detection, because noticing movement in the outside
world is more vital to survival than stationary conditions.407
Understanding the notion of object constancy can help further clarify the two
distinct visual streams and their functions. When we go to pick up a cup on the
table we are not consciously interested in the geometric projection of that cup
to our retina, because this is always changing. The object of our interest is kept
steadily focused as a constant image, using our vision for perception, while our
vision for action brain kicks in to pick up the cup. We would not be able to keep
calculating our position while also calculating lifting it at the same time. The
idea of perceptual constancy408 keeps the cup focused in our minds,
and unconscious vision / Melvyn A. Goodale and A. David Milner: Oxford; New York:
Oxford University Press, 2004. Bibliographies Non-fiction, see location 711 in online
version of this publication. This condition was first noted by Hungarian neurologist Reszo
Balint, and is also called Balint’s Syndrome.
c1988. Bibliographies Non-fiction, page 78 - 79
408 The notion of constancy can be described as being present in all the things we can think
about, for example, in the constancy of a colour, we can say that the colour of a blue
shirt is always a blue shirt, no matter what sort of lighting conditions we see it under.
For a discussion of constancy from a phenomenological perspective see Sokolowski,
264
contextualising its position much like the contextualising processes seen in the
experiments of Scott Murray, discussed above.
Thus the ventral stream provides us with contextual cues, while the dorsal
stream prepares us for action, based on the computations received from the
ventral stream.409
The landing of the Mars Rover on Mars in 2012 illustrates the point Goodale
and Milner are making. As the land craft moves over the terrain, it uses its
camera to survey the landscape. In human vision terms, this is like the ventral
stream tuned to perceive and find meaning about the world. When the craft
comes upon an object it wants to investigate, it needs a different set of
computations to accomplish the task. It has to hand over this job to a system
that can mobilise a mechanical arm to reach out for the object and grasp it for
closer inspection. This is equivalently achieved by the human dorsal stream. In
the actual Mars Landing project, scientists used both pre-programmed
computers, and also gave direct directions to the craft. In the same way, say
Goodale and Milner, our visual system uses both ventral and dorsal streams,
both direct and indirect systems, when acting in the world, even though it might
seem like it is our visual perception alone, in one smooth operation, that is
controlling our actions.410
Robert. 2000. Introduction to Phenomenology. 8th ed. New York: Cambridge University
Press.
409 There may also be evidence that the ventral stream depends on V1 for visual input but
the dorsal stream does not, see Goodale, Melvyn A., and A. D. Milner. 2004. Sight
unseen: an exploration of conscious and unconscious vision / Melvyn A. Goodale and A.
David Milner: Oxford; New York: Oxford University Press, 2004. Bibliographies Non-
fiction, chapter 6.
410 For a discussion of some of the concepts and historical discoveries of the dual-stream
theory of visual perception, see Chapter 4, The origins of vision: from modules to
models, in Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen: an exploration of
York: Oxford University Press, 2004. Bibliographies Non-fiction.
265
From Goodale and Milner’s perspective, visual perception exists to let us make
sense of the outside world, and to create representations of it where it can be
filed away for future reference. Vision for action, on the other hand, codes
computational tasks for real world action. Both sources of information have to
be available almost in an instant, when required for action, using these two
streams governed by two very different objectives – the objective of context
and the objective of action. Explaining how these two systems interact
separately and together, gives us further information about how visual
perception might work.
Further studies have also shown that these two streams compute time
differently too; that the perceptual stream holds information for a very long
time (in visual memory), while the action and movement stream may hold
‘metric’ information (about size and distance or location) only for a matter of
seconds.411 This is because, as viewers, we are egocentric – seeing the world
always from the point of view of our two eyes. As both the world, and we are
constantly moving, there would be no point in storing every computational
action (because the visual brain requires efficiency).
Goodale and Milner conducted further experiments to show the differences

these two streams make in terms of time. In the experiment people were asked
to reach out to an object, like a block of wood. This would engage the vision for
movement part of their brains, but when they reached out the object was taken
away, and they had to rely on visual memory to re-enact how they would have
grasped the object. In this way, the dorsal stream for motor control was
411 Goodale describes an experiment where people looked at a solid block and then waited
in the dark for several seconds before attempting to grasp it. When the object was
removed during the delay, people’s movements were slower and less accurate as they
demonstrated how they would grasp the block if it had been left there. Thus a change
in the character of movement was evident, even after a delay of only two seconds. See
Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen: an exploration of conscious
Oxford University Press, 2004. Bibliographies Non-fiction, chapter 7.
Below is part two of a visual perception lecture series (from the link provide above with
Dr Scott Murray), with Prof Melvyn Goodale:
266
disengaged and taken up by the (visual memory) ventral stream. The ventral
stream would have found it much more difficult to grasp the object using visual
memory, or perception alone, and the movements show that the character of
movement was indeed affected. The two systems see the world in different
ways, using quite different frames of reference - the perception stream uses a
scene-based frame of reference, which is relative and contextual, while the
visual action stream uses eccentric based frames of reference to perform
computations. Furthermore, the perceptual stream is top-down because it is
based on knowledge to make inferences, while the vision for action stream is
bottom-up because it works from the optic array.
Further experiments show that visual perceptions can be 'fooled', but not our
immediate visually guided actions. This is evident in the three-dimensional
facemask illusion. 412
Using a hollow white 3D mask that rotated, participants were asked to reach
out and touch the facial features. As the mask turned, revealing the back of the
mask, which was hollow, it actually appeared to be 3D instead. Small targets
were placed on the actually hollow, but apparently convex, face, and subjects
were asked to use their fingers to flick the targets off. Despite the presence of a
compelling illusion of a normal face, the flicking movements were directed at
the real, and not the illusory, locations of the targets. These results show that
the same visual stimulus can have completely opposite effects on conscious
perception, and visual control of fast action. Further, these experiments show,
through the mechanisms of depth processing in the two visual streams, that the
dorsal stream can guide the fingers to the actual target, precisely because it
412 See the Hollow mask illusion for yourself:

https://www.youtube.com/watch?v=sKa0eaKsdA0
See also the web page of Professor Richard Gregory
http://www.richardgregory.org/experiments/
Goodale and Milner describe these experiments in Goodale, Melvyn A., and A. D. Milner.
2004. Sight unseen: an exploration of conscious and unconscious vision / Melvyn A.
Goodale and A. David Milner: Oxford; New York: Oxford University Press, 2004, page
160 – 161.
267
does not rely on pictorial cues, even though the perceptual stream is perceiving
things otherwise.413
Goodale and Milner’s investigations reveal more about the nature of

perception, and how the ventral stream might construct our visual world. It may
be that an ultimate reason for our perceptual construction of the real world is
that it can provide us with a way of thinking about past, present, and future
visual worlds in which we can plan our actions. To this end, the perceptual
stream may create ‘symbols’ of objects that we have encountered in the past,
that do not appear to us exactly as we encountered them in our action stream,
but rather, are independent and constant in their qualities. Given that the dorsal
stream overrides the situation when the perceptual, ventral stream ‘misjudges’,
it may be that perception is, in fact, the handmaiden to action.
7.5 Theories of visual perception, art and the research

project
As Ian Gordon writes in Theories of visual perception,414 theories of visual

perception are better described as ‘coherent sets of ideas’, and given the
complexity and mystery of the brain, there is still no general scientific
consensus as to what exactly needs to be expounded about perception,
consciousness, or the neurological mechanisms that seem to comprise visual
perception. All these ‘working ideas’ are in constant flux, contention and
dispute. Goodale and Milner’s theories may also be held in contention in this
context (there is possibly an argument for a far more integrated working
relationship between the two streams than originally proposed), but given the
413 For further explorations of depth perception using visual ‘illusions’ (the hollow face
mask as Charlie Chaplin for example) see the web page of Professor Richard Gregory
414 Gordon, Ian E. 1997. Theories of visual perception: Chichester; New York: J. Wiley,
c1997. 2nd ed. Bibliographies Non-fiction.
268
weight of their findings and those of others contemplating the two visual
systems theory, there may be much to learn from such an approach to the
processes of human vision.
In terms of visual perception and its relationship to this research project, the
most critical point is that I am always acutely aware that my mind is actively
engaged in the processes of visual perception, and this may be even more
apparent to me than it might be for those with healthy vision. This is because I
literally see my mind filling in the gaps caused by the scotoma, and
compensating for the blurred visual periphery.
I witness my mind gathering in colours, forms or other ‘items’ to compensate

for these deficiencies in my retinal input. Sometimes these things are gathered
in from the environment which I am viewing, and sometimes they are a result
of things I am thinking about, am consciously aware of, or am even not thinking
about at all, but that have some more subconscious relevance. At times, these
phenomena are humorous, and it is always fascinating to see the mind so
engaged with the process of compensating to create a full, perceptually
complete, picture.
Some examples include the memorable incident of walking down a very windy
street on a sunny day. With delight I saw a beautiful little brown puppy
scurrying towards me, only to discover it was a brown paper bag, rolling along
the pavement.
On other occasions, absence fills the gaps eloquently when I am talking with
others, and I cannot see their heads or faces. Usually this is compensated for in
a rather expected manner, as my mind, filling in their absent face with the
clothing they are wearing – a floral pink shirt, stripes, etc. and at other times
the space may be filled with something I am not aware of consciously, but that
proves to have some theoretical link with that person at that time. On one
occasion, having spent the day formatting a word document, I looked up to see
my supervisor, whose face was now covered by rows of little Pac-men faces
269
marching back and forth across the scotoma. I had seemingly transferred my
thoughts about computing onto the void. On another occasion, while talking
with a friend, his face was concealed by a publishing logo of softly focused
penguins on an orange background. I realized I had been thinking about the
task of writing.
I cannot say whether these are indicative of Charles Bonnet Syndrome as they
seem to be more a ‘drawing in’ of environmental factors, visual objects and
thoughts to my conscious awareness. These compensatory processes seem to
be more ‘useful’ to me than the more dissociated or extra contextual visions
that seem to predominate with Charles Bonnet Syndrome.415
In the case of cutting branches from the tree, was it perhaps, as Goodale and
Milner suggest, the motor visual functions kicking in that enabled me to
accomplish a task that requires more vision than I have? I may have been using
a combination of peripheral vision, eccentric viewing, logical deduction, the
processes of image constancy, and my mind's eye, to cobble together a picture
of where the branches were in order to ‘hand over’ the task to the visio-motor
parts of the brain. In terms of an empirical theory of vision, could it also have
been that given that circuitry developed over evolution and also in my life
before vision loss, had given me enough relevant circuitry to be able to
complete the task efficiently based on prior knowledge, and that this
knowledge, combined with tapping of the tree limbs to locate them, that is –
empirically testing my environment – enabled a successful achievement of the
task at hand? The question all this raises for me is to what extent the retina
itself plays in our understanding of the world around us, and if a part of the
retina itself is damaged through disease, then are there other mechanisms that
415 I see the connections between perception and consciousness played out in the cortical
completion phenomena, over the scotoma, on a daily basis, and the nature of these
filling in processes seem to indicate that, in my case, cortical completion has a utilitarian
function. These ‘illusions’ do not seem like tricks of the mind, but rather, indicate that a
survival-guided tactic is being employed (even if it ‘gets it wrong’ sometimes) in order
to provide support where retinal deficiencies have occurred.
270
come into play along the visual pathways to compensate? If this is the case,
then it seems to me that perception and consciousness are both deeply
implicated in the processes of seeing. In other words, my eyes are deteriorating,
but my mind is not blind.
As Cattaneo, Zaira, and Tomaso Vecchi in Blindvision416 point out, the eyes are
just one part of the visual system, and that any damage to the eye only affects
part of the chain of visual circuitry. (Similarly, as seen with Goodale and Milner’s
patient, Dee, she had perfectly functioning eyes, but another part of the visual
circuitry rendered her as blind). Seen in this light, there are many more
components to vision than would usually be expected.
Moreover, there may be other factors at play when the macula is disturbed. In
a study related by Michael Wolffe417 in 1995, a group of teenagers with central
vision loss, evidently with artistic abilities, were asked to paint still lifes from a
scene. To the researcher’s astonishment, their artistic renditions were as good
as anyone with excellent visual acuity, indicating to the author of the study that
there might also be adaptations going on at a cortical level, that involve the
peripheral retina to such an extent as to indicate that it was not only the macula
and fovea involved in fine detail and colour vision, but also other areas of the
retina. Unfortunately, the images reproduced in the article that the students
had painted were barely visible and I could not include them in this chapter,
and there were no further articles by the author that I could find that followed
up on this research. Thus, it could appear that the visual cortex can generate a
416 Cattaneo, Zaira, and Tomaso Vecchi. 2011. Blind vision. [electronic resource]: the
neuroscience of visual impairment: Cambridge, Mass.: MIT Press, c2011. Bibliographies
Non-fiction Computer File.
417 Wolffe, Michael. 1995. "Role of peripheral vision in terms of critical perception--its
relevance to the visually impaired." Ophthalmic & Physiological Optics 15 (5):471-474.
271
clearly detailed representation of a visual scene, integrating information
received from receptors over the whole retina.418
In my distorted viewing, I find that context is a method I use often in

determining what I see. Much of the time, the visual scene is irresolute –
pixelated and blurred, and it is hard to define what I am looking at until I use
contextual clues and deduction. This was not possible when I saw the puppy
running down the street – it could have been a puppy just as much as it could
have been a brown paper bag. Sometimes it takes time until images or scenes
reveal themselves. Context aids perception of what I am seeing. In support of
empirical theories of vision, I am often asking myself what the likelihood is of
what I think I am seeing. Vision (even incomplete or incorrect vision) may alert
me in the beginning to something in my environment, but it may be other
sensory modes I use to back up the visual hypothesis.
Is what I am visually experiencing what philosopher Andy Clark and others have
called, “The Grand Illusion”? That is, in terms of vision theory, the idea that all
vision is a construct to such an extent that the rich detailed vision we think we
see, is nothing more than an apparition created by our minds. What is seen may
be quite a small amount in actuality, but it is augmented and festooned with
rich, visual detail produced by our minds.
In the article, ‘Is seeing all it seems? Action, reason and the grand illusion’, Clark
asserts that the Grand Illusion theory is an illusion in itself. Why? Because our
visual experience is not just misleading us – there are always correlations with
reality that enable us to action that is relevant for survival. That is,
418 Baker, C. I., E. Peli, N. Knouf, and N. G. Kanwisher. 2005. "- Reorganization of visual
processing in macular degeneration." - 25 (- 3):- 618.
272
“…we have access to this depth and detail as easily as we have access to
facts stored in biological long-term memory. It is just that in the case of
the visual scene, retrieval is via visual saccade and exploratory action” 419
Clark agrees with Goodale and Milner’s line of thinking regarding how visual
perception might work, but Clark surmises that the dual visual system model
overplays the extent to which they might work in isolation, and that, “it is a
mistake to tie visual experience too tightly to the invariants that guide and
characterize visio-motor action.” Clark summarizes the debate around theories
of visual perception with the following offering on how and why vision occurs:
“… the world is seen …in a way that continuously converges selective input
sampling with stored knowledge, memories and expectations. The
contents of conscious visual experience emerge at this complex
intersection. What we consciously see is a world tailor-made for thought,
reason and planning. That’s why we can intentionally act in the very world
we experience.”420
What implications do any of these ideas about visual perception have in this
research project? Firstly, they reveal that the processes of visual perception –
no matter what theory may be most likely to be the case - are active, complex,
and deeply involved in trying to compensate for the lack of retinal input at the
centre of my vision. Both what I see on a daily basis, and what I have chosen to
explore and portray in the artworks, are a result of my thinking – my conscious
and unconscious awareness. Are my thinking and my seeing one and the same?
For Samir Zeki, the act of seeing leads us to question the nature of
consciousness, and ultimately to question the nature of knowledge:
419 Clark, A. 2002. "- Is seeing all it seems? Action, reason and the grand illusion." - 9 (- 5-
6):- 202.
420 Clark, A. 2002. "- Is seeing all it seems? Action, reason and the grand illusion." - 9 (- 5-
6):- 202, page 33
273
“When and at what stage of the visual pathway do we become conscious
of seeing an object and when are we conscious of the characteristics of
that object? …There is no colour unless I see it; I cannot see it unless I am
conscious. There is no conscious awareness unless certain neural
organizations are intact and functioning normally, and it is a feature of
such neural organizations that they possess consciousness.” 421
Similarly, while Goodale and Milner also see that investigations into visual
perception inevitably lead us into difficult questions about consciousness,422
studies into visual perception and even art practice may provide a path into this
mystery.
There may be strong correlations between the work of an artist and the work
of a neuroscientist, as Samir Zeki has pointed out.423 By extension, this research
project may have tracked the same lines of inquiry as neuroscientists have.424
The illusion of the checked shadow seen above (refer Figure 13: The Checker
Shadow Illusion developed by Ted Adelson.) is a common problem for an artist.
If I had to paint a replica of this image, I would have had to find the luminance
values of the grey squares in the shadow. Eventually I would have recognised
that it would be the same grey paint I mixed for the other square that was not
in shadow. This is what artists do when they paint what they see.
421 Zeki, Semir. 1993. A vision of the brain: Oxford; Boston: Blackwell Scientific Publications,
c1993 (1994 printing). Catalogs Non-fiction, epilogue
Oxford University Press, 2004. Bibliographies Non-fiction, page 185
423 Zeki, Semir. 1999. Inner Vision: an exploration of art and the Brian: Oxford University
Press.
424 A 2011 study found that the strategies artists employ “could aid our understanding of
neural coding in human visual perception”. See Graham, D. J., and M. Meng. 2011.
"Artistic representations: clues to efficient coding in human vision." Vis Neurosci 28
(4):371-9. doi: 10.1017/S0952523811000162.
274
Wade and Swanston posit that, long before laboratory tests explored theories
of visual perception, these investigations were carried out by artists,
systematically exploring pigments, colours, and spatial representations of the
real world onto a two dimensional plane425. It is surprising, they say, that
phenomena disclosed to the scientist’s eye are reported as discoveries,
whereas artists have reported the same phenomena and explored them
centuries before they came under scientific scrutiny. There is a parallel
between the artist, trying to capture this three-dimensional world onto canvas,
just as the retina tries to capture the three-dimensional world on the flatness
of its surface.
But it was also while looking at another illusion that I realised something more
about the nature of my vision loss. The illusion of the grey squares in the Rubik’s
cube (refer Figure 14: The Rubik’s Cube coloured squares illusion) shows grey
squares, each presented with either a yellow or blue overlay. In their own
contexts they appear either yellow or blue, but when taken out of context, they
are the same grey value as the grey squares in the other illusions presented in
this chapter.
Our perceptions ‘colour’ these grey squares. It is not our retinas that are doing
the colouring but rather our conscious perceptions that are causing them to
appear as either yellow or blue. Could this then be related to the colours I see
within the processes of cortical completion? That is, I see colours over the
scotoma, and so in my visual renderings, I have portrayed the presence of
colours.426 Yet, as the Rubik’s cube illusion shows those colours are not there
425 See Wade, Nicholas J., and Swanston, Michael. 1991. Visual Perception: An Introduction.
Florence, KY, USA: Routledge. Accessed April 21, 2015. ProQuest ebrary. chapter 2
426 There should be – and there probably is – a quite significant colour disturbance with my
experience of Stargardt’s Disease, except that its perception is being influenced by other
275
at all, they are simply grey. It may be that, ‘if that is what I am seeing, then that
is what I am seeing’, and it may also be as Samir Zeki says, ‘that there is no
colour unless I see it’.427 In this case I see the colour because I think it.
Once again, perception may not arise from our retinal input but from our
conscious and unconscious thinking. And again what I have portrayed to be the
symptoms of central vision loss may be more to do with what I think I am
seeing, than what I am actually seeing, or these may be one and the same thing.
Or put more precisely, I am portraying what arises in the conscious visual
perceptions that are mediated by my central vision loss.
Yet again, through making art, I would have seen the difference between what
I perceived and the eventual colour I would have put on the canvas if I were to
paint this illusion – probably after much trial and error - to find ‘what looks
right.’ Art practice is research.
In a recent study,428 researchers wanted to know if artists, (from years of visual

training), somehow had greater access to the retinal input (the proximal
stimulus), coming in from the outside world. Were they less influenced by
contextual cues and perceptual constancies than non-artists? By testing size,
and lightness constancy, and anodal completion (the perception of an object’s
shape even though it is partially obscured), the researchers found there was no
factors like cortical completion. This might become evident with proper testing. See the
study on the effect of Stargardt’s Disease on colour in the article by, Mäntyjärvi, M., and
K. Tuppurainen. 1992. "Color vision in Stargardt's disease." International
Ophthalmology 16 (6):423-428. (Researchers found that, although there was only a mild
effect on colours at the early onset of the disease, at later stages the red-green defect
became stronger as did the ability to discern blue colours.) For a further discussion on
colour deficiency in art see also Marmor, Michael F., and Philippe Lanthony. 2001. "The
Dilemma of Color Deficiency and Art." Survey of Ophthalmology 45 (5):407-415. doi:
http://dx.doi.org/10.1016/S0039-6257(00)00192-2.
c1993 (1994 printing). Catalogues Non-fiction, epilogue
428 Perdreau, F., and P. Cavanagh. 2011. "Do artists see their retinas?" Front Hum Neurosci
5:171. doi: 10.3389/fnhum.2011.00171.
276
difference between artists and non-artists – they did not have ‘specialized
visual expertise’, with an ability to more easily discern the proximal input rather
than the perceptions that arose from them. Artists do not ‘see their retinas’.
This brings us back to an examination of consciousness, which can be a very

difficult concept to analyse.429 Susan Greenfield430 explores the
phenomenology of consciousness from the perspective of neuroscience, giving
some intriguing hypothesis as to what might be included in a working definition
of consciousness.
The primary, quintessential feature of consciousness is that it is subjective. The

problem for scientists however, is that they want to remain objective, yet this
is not possible in discussing consciousness, and any scientific explanation must
include this feature in its definition - therefore, it could be said that
consciousness is ‘the first person subjective world as it seems to us.’
Greenfield hypothesises that just as we can experience levels of

unconsciousness (as evidenced in brain activity through anaesthesia) there
might also be levels of consciousness, and that in this way we are more
conscious at some times than at others – consciousness is not just ‘lights on’,
or ‘lights off’, but more like a dimmer switch.431 Seen in this light, consciousness
is continually variable. Through her research, (using dye based voltages
administered to non-human brains), Greenfield has observed ‘neuronal
429 For various discussions by philosophers and neuroscientists on the subject of

consciousness see Blackmore, Susan J. 2006. Conversations on consciousness.
[electronic resource]: what the best minds think about the brain, free will, and what it
means to be human: Oxford ; New York : Oxford University Press, c2006. Non-fiction
Computer File. In particular the Greenfield, Dennet and Crick interviews.
430 Refer the Susan Greenfield lecture on the neuroscience of consciousness at the
Melbourne Brain Centre, University of Melbourne on 27 November 2012, at:
https://www.youtube.com/watch?v=k_ZTNmkIiBc
431 This hypothesis of levels of consciousness comes from Greenfield's lecture given at the
University of Melbourne in 2012. See the Susan Greenfield lecture on the neuroscience
of consciousness at the Melbourne Brain Centre, University of Melbourne on 27
November 2012, at: https://www.youtube.com/watch?v=k_ZTNmkIiBc
277
assemblies,’ or groups of neurons that are transient, can move quickly, and
incorporate large areas of brain cells at any given time. These neuronal
assemblies are the cells’ responses to outside stimuli, generating moving areas
of activity, and creating and forming interconnecting pathways that can result
in lasting cortical changes.
Consciousness can reside somewhere in this scenario; which Greenfield likens

to a stone being cast into a pond. The rings represent the consciousness of the
sensory impact. Sometimes, if the stone is small, or thrown gently, there can
be less of a sensory stimulus, and thereby less of a consciousness in response,
perhaps with less cortical changes, while at other times, the stone can be
thrown with more force, or it can be a larger stone, creating (like larger ripples),
a stronger stimulus and thus more conscious resonance, and more significant
neural changes. If more stones of varying sizes, and varying force, are thrown
into the pond, competing stimuli and impulses vie for neuronal attention, with
competitive and varying levels of consciousness.432 In this scenario, there is
always an exchange between the receptive field properties (also mediated by
modulators, or brain chemistry, and other factors that can increase, alter, or
diminish this activity), and the pathways already formed, and forming, in the
brain. There is an exchange between bottom-up and top-down neural
processes, and every given moment in space and time (which can never be
undone once it has lapsed from future, to present, to past), is contributing to
this continuous process. These momentary experiences become the unique
narrative of each individual consciousness. 433
432 The greater the neuronal assembly, the less emotion: the emotions are the most basic
form of consciousness.
433 See also Greenfield, Susan A., and Toby F. T. Collins. 2005. "A neuroscientific approach
to consciousness." Progress in Brain Research 150:11,586-23,587. doi: 10.1016/S0079-
6123(05)50002-5.
278
What is the purpose of visual consciousness? For Crick and Koch, the structured
nature of conscious representations must point to an inherently functional
nature, and that this must be to
“…produce the best current interpretation of the visual scene—in the light
of past experiences—and to make it available, for a sufficient time, to the
parts of the brain which contemplate, plan, and execute voluntary motor
outputs.”434
This requires attention or awareness, but this attention can be driven by the
motivation to task, (bottom-up processing), or top-down attention (accessing
the planning part of the brain).
Goodale and Milner note, following experiments with binocular rivalry (a

simple example of which can be that we either see a white vase or two black
faces in profile) that visual consciousness resides in the ventral stream, and that
without the ventral stream there is no consciousness.435
Goodale and Milner also state that it is the human operator that is the ventral
stream, with linked cognitive systems that provides the conscious monitoring
of what is going on even though it may be the dorsal stream that is doing the
work. Goodale and Milner say the idea that we can see our coffee cup clearly
and consciously, yet at the same time not be using that same visual percept to
434 Noe, Alva, and Evan T. Thompson. 2002. Vision and Mind: Selected Readings in the
Philosophy of Perception. [electronic resource]: Cambridge, Mass.: MIT Press, c2002.
Non-fiction Electronic document. Chapter XIII.
See also:
Koch, Cristof and Crick, Francis. 2002. "The neuronal basis of visual consciousness."
Computation and Neural Systems Program, California Institute of Technology, Pasadena,
California 91125 and 2The Salk Institute, La Jolla, California, 92037.
http://authors.library.caltech.edu/40600/1/465.pdf
435 “Without the ventral stream there is no visual consciousness.” Goodale, Melvyn A., and
A. D. Milner. 2004. Sight unseen: an exploration of conscious and unconscious vision /
Melvyn A. Goodale and A. David Milner: Oxford; New York: Oxford University Press,
2004. Bibliographies Non-fiction, page 190
279
guide the act of picking it up, is highly counter-intuitive, and this idea has been
contested by other vision scientists.
Goodale and Milner conclude that much of the visual brain’s work is
unconscious and that most of our actions are controlled by visual computations
that are completely inaccessible to conscious scrutiny. Therefore, even though
there are highly integrated mechanisms involved between the two streams of
the visual brain, vision itself is not unitary, but is a complex interaction between
two visual modes that incorporate both conscious and unconscious vision in
order to produce successful behaviors. (Could the argument for this
disassociation between conscious and unconscious seeing, in the ventral and
dorsal streams, also relate to Derrida’s idea of the blindness of the hand as it
draws what it sees?436)
Robin Hawes has also used an art practice based inquiry into the subject of art,
neuroscience and visual consciousness. The aim of his research was not to
explore the world of ‘seen objects’, but rather to explore the nature of
perception itself.437
Positioning his theoretical frameworks somewhere in between Samir Zeki’s

ideas of art as the result of neural processing, and Noe’s notions of perceptual
presences, Hawes contemplates the benefits of neuroscience for artistic
practice:
“Although initial indications are that embodied theories of perception

seem to hold far more potential for an artist to engage consciously with
436 See Goodale, Melvyn A., and A. D. Milner. 2004. Sight unseen: an exploration of
York: Oxford University Press, 2004. Bibliographies Non-fiction. Chapter ix ‘getting it all
together.’
437 Hawes, Robin. 2013. "Art & Neurophenomenology: Putting the Experience before the
Words." Constructivist Foundations 8 (3):332-338
See also http://www.falmouth.ac.uk/content/dr-robin-hawes
280
these questions than perhaps exclusively neural theories can, it remains
unclear whether exploring these phenomena through art practice is
particularly beneficial to the works that are produced. My research so
far has provided mixed results, and attempting to bridge the divide
between art and science in this way has certainly proved a very tricky
path to negotiate in this respect.”438
In writing this chapter, and spending much time reading on the subject of
neuroscience, I am aware of how much I have left out of this discussion. The
topic of visual neuroscience is rapidly growing, and there is much research
currently underway. I have come to understand that the study of vision can
provide a pathway into further understandings of the brain, and I am fortunate
to find those connections and parallels with art practice.439 But there are many
theorists and theories I have left out (such as Gestalt theories of perception,
which have parallel findings in neuroscience) and also the thoughts of many
other philosophers and scientists on the subject of visual perception.
In this research project neuroscience provided a concrete framework within

which to come to a better understanding of the processes of visual perception
438 Hawes, Robin. 2013. "Art & Neurophenomenology: Putting the Experience before the
Words." Constructivist Foundations 8 (3):332-338. Haws statement also brings me back
to contentions between art and science in research, and Saun McHiff's plea to return to
‘the authority of experience’ in this age of ‘sciencisms’. See McNiff, Shaun. 1993. "The
authority of experience." The Arts in Psychotherapy 20 (1):3-9. doi: 10.1016/0197-
4556(93)90028-z.
439 In an essay on perception, consciousness and the processes of evolution, Marc-Williams

Debono states that, “Sensory access to matter has as great a significance for an artist as
for a scientist”, and that by, “..exploring the dynamic relationship between cognition
and art we (can) make new ways to investigate levels of perception (which) will probably
bring to light new epistemological fields.” See Debono, Marc-Williams. 2004. "From
Perception to Consciousness: An Epistemic Vision of Evolutionary Processes." Leonardo
37 (3):243 – 248, page 247.
Neuroscience and art can also be explored through the study of cognitive science. See
Seeley, W. P. 2013. "Art, Meaning, and Perception: A Question of Methods for a
Cognitive Neuroscience of Art." British Journal of Aesthetics 53 (4):443-460.
A discussion of science-art relationships can also be found in, Richmond, Sheldon. 1984.
"The Interaction of Art and Science." 81.
281
and perhaps answer some of my many questions as to the cause of my visual
perceptions as a result of macular dystrophy.
While Hawes was able to come to understandings of visual perception in his

own work (such as seeing how light ‘cues’ our idea of forms and perspectives)
through experimentation, I had the dubious fortune of seeing visual ‘perceptual
presences’ continually at play in my daily activities as a result of my eye disease.
By extension, this also helped me understand why I was seeing things the way
I do, and it also heightened my awareness of the visual symptoms and how I
could relate this through art practice. It also showed me how art practice itself
had parallels with the study of vision by neuroscience, establishing some links I
had previously never thought of.
There was a circularity between studying the neuroscience of vision, thinking

about and exploring my eye disease and making art.
If Samir Zeki is correct – that the whole purpose of seeing is to come to an

understanding 440 then the act of seeing and making artwork about what I see
brought me a little further down the path of coming to that understanding.
Investigations into theories of visual perception provided theoretical

frameworks, which brought a better understanding of the processes of vision,
how these might be affected by my vision loss, and how my visual experiences
are related through art. Producing artworks through these frameworks of
understanding focused my attention on the visual symptoms.
By focusing on the production of artworks based on my macular degeneration,

I also explored what vision and visual perception might be comprised of.
Neuroscience can bring understanding, art can bring understanding, and both
c1993 (1994 printing). Catalogs Non-fiction, page 4
282
can lead to new knowledge;441 in this way, Samir Zeki’s statement rings true for
neuroscience, art and visual perception:
“It is my view that one cannot unravel the first process, that of seeing, in
any profound sense unless one unravels the second process, that of
understanding what is seen, because there is no real division between
the two. In other words, seeing is understanding.” 442
7.6 Chapter summary
This chapter explored concepts around human vision, including the structures
of the human visual system and the discovery of receptive fields. Exploring
these concepts also gave rise to an examination of theories of visual perception,
in particular an empirical theory of human visual perception, and the idea that
the visual brain can be divided into both perceptual and motion driven modes.
A discussion of some of the so-called visual ‘illusions’ studied by neuroscientists

also revealed the complexities of vision, perception, and consciousness. Ideas
around theories of visual perception were also discussed in relation to this art
research project, and more generally to my experience of central vision loss,
questioning how discoveries in this scientific field might have assisted
answering some of the questions raised by my project. Ultimately, these
investigations, although extremely illuminating, also give rise to further
questions as to the nature of visual perception and vision loss, and how they
can be further explored through the processes of art.
441 See also Samir Zeki, art and neuroscience interview here:
https://www.youtube.com/watch?v=D_5twGr9l_0&list=PLfSx6gpbbJMJ0FZSkvZYRlDQ
378uwMKur
V.S Ramachandran on neurology and art here:
https://www.youtube.com/watch?v=0NzShMiqKgQ
c1993 (1994 printing). Catalogs Non-fiction, page 4
283
284
8 Conclusions and Contributions
8.1 Conclusions and contributions
The aim of this research project was to articulate, as accurately as possible, the
effects of macular dystrophy upon the visual field, through the framework of a
visual art practice.
The visual symptoms of my eye condition were nebulous and dynamic, as

mysterious to me as the medical causes of the disease itself. It was indeed a
void, a region of uncertainty, on many levels. Seeking clarification, I had
identified two large interrelated gaps in discourses around macular dystrophy
– an absence of first hand patient perspectives, and misrepresentations of how
the disease appeared. If I could give an eyewitness account of the effects of
macular dystrophy, and replace those misrepresentations with a more faithful
articulation of how it appeared to me, then I might be able to address these
two gaps at the same time. My research question was simple: “What does
macular dystrophy look like to me?” It was a question that was capable of being
answered through the very visual language of art.
The research project began by exploring medical aspects of my disease,

identifying its causes and how it manifests on a cellular level. An historic
overview was also needed, as there was some confusion over the name of my
disease – whether it was Fundus Flavimaculatus, or Stargardt’s Disease, or
whether these were one and the same condition. Similar confusion reigned
over definitions of legal blindness, and how I might place myself within the
continuum from ‘normal’ vision to ‘blindness’. Issues of terminology were also
examined.
The art works were based on how the entoptic effects appeared to me in the
everyday context, through activities of daily living. Due to the dynamic nature
of these subjective experiences, it was inevitable that questions arose around
285
how it is that humans and other visual animals come to perceive the world
through the sense of sight – theories of visual perception, inspired mainly by
neuroscience, had to be explored.
My simple question, “What does macular dystrophy look like to me?” is not
simple to answer, particularly when examining why my symptoms might appear
in the way they do.
The challenge with this research project is that it is subjective, and therefore,
the characteristics of vision loss that I experience, may be totally different from
that of any other person with macular dystrophy.
But the value of the research project might originate precisely from its
subjectivity, particularly when considering that there is no ophthalmic
instrument yet invented that can capture the lived experience of someone’s
eye disease. We can never look through someone else’s eyes. There is an
argument, however, that viewing art is in effect seeing the world from someone
else’s perspective - the artist’s eyes. In this way, art practice as research can
have value in such a study. Artworks that portray vision loss through the
entoptic visions of an artist with macular dystrophy may be the closest we can
get to seeing the world from the perspective of this disease.
This research project also underscores art’s value to communicate, and from
there, to educate. It can make enormous contribution to other fields of inquiry
such as medicine and science,443 showing its possible trans-disciplinary
potential.
443 See for example, the Vision Group at the Centre for Advanced Visual Studies at MIT, who
developed the Seeing Machine Camera, under the direction of Elizabeth Goldring, a
visually impiared artist. Wu, Faye-Lynn, Chindhuri Selvadurai, Quinn Smithwick, James
Cain, Jerry Cavallerano, Phil Silver, and Elizabeth Goldring. 2012. "The Seeing Machine
Camera: An Artistic Tool for the Visually Challenged Conceived by a Visually Challenged
Artist." Leonardo (2):141.
286
Furthermore, the subjective nature of this research project might prove useful
for future inquiries. Are the images that result from this personal exploration
unique to me, or are they common experiences for others with the same
disease, or indeed other types of retinal disease such as Age Related Macular
Degeneration? These findings now need to be tested in a manner possibly
similar to that of a recent glaucoma study,444 which could be done with the
visual characteristics I have identified, thereby revealing more accurate and
truthful depictions of eye disease.
Little is understood about the extent to which central vision loss impacts
activities of daily living. Creating artworks drawn from daily life, and through
the prism of low vision, reveals its extent is far greater than we might think, and
this has implications for those facing a lifetime of progressive vision loss.
Central vision loss may not simply appear as a static black spot in the centre of
the visual field, but instead, may have a compelling and wide ranging influence
across the visual field that permeates every aspect of the lives of those with
vision loss. Showing this may also help inform: family; carers; health
professionals; government policy developers (for example, transport); and the
broader community, increasing the understanding of the needs of those with
vision loss.
If it can be shown how the effects of vision loss are compounded in the
environment, in public spaces, streetscapes, academic institutions, museums,
and galleries for example; this may have an influence on the way the
environment itself can be adapted for those with vision loss. Those of us who
have low vision may have very different needs to those with total vision loss,
who may use touch and sound as primary sources of navigation.
444 See Crabb, David P., Nicholas D. Smith, Fiona C. Glen, Robyn Burton, and David F.
Garway-Heath. 2013. "Original article: How Does Glaucoma Look? Patient Perception
of Visual Field Loss." Ophthalmology 120:1120-1126. doi:
10.1016/j.ophtha.2012.11.043.
287
When vision loss occurs later in life and with some still useful residual vision,
sight is still an important factor, and is still more natural a sense to rely on than
touch or sound alone. Better signage, with higher contrast and greater visibility
of markers in the environment need to be addressed.
These issues became so evident for me during the course of this research
project, and it has been astonishing to discover how little of the low vision
community’s needs are met simply because it would not have occurred to local,
state or federal governments what might be lacking. Showing these deficiencies
through artwork can be a way to get the message across quickly and effectively.
This is a matter of growing urgency because of our ageing population – Age
Related Macular Degeneration sufferers may experience very similar visual
symptoms, and the number of those with AMD is rising.445
Another outcome of this study has been how the impacts of vision loss are felt
in the academic context. As the research progressed over the three-year
duration, my vision deteriorated from a point where I could read printed text
with strong magnification at a very close distance, to a distinct reliance on
electronic media, which could be enlarged or read through text to speech
software. There is a clear need for further investigation into the ways tertiary
institutions can assist those students with vision impairment to have equal
access to all learning material, from the library to the classroom.
While this point also extends to other academic arenas, it also reveals a need
for greater access to museums and galleries, for those with vision impairment.
Art can still be made by those with vision loss, can still be appreciated and
should still be encouraged. The visual brain does not diminish along with the
photoreceptor cells of the retina.
There needs to be a more accurate, patient-driven perspective of the entoptic

effects of vision loss, through artistic output in exhibitions, publications,
445 Centre For Eye Research Australia, Visionary – Annual Review 2012, page 1
288
medical texts, low vision websites and other media formats, and it is hoped this
research can make a contribution in that regard. In doing so, the needs of those
with vision loss can become more evident, while also providing a more accurate
description, and better understanding, of its effects on peoples’ lives.
8.2 Initiating dialogue
While an aim of this research project has been to employ the rich, visual
language of art to describe and articulate the effect of macular dystrophy upon
the visual field, it is also hoped the project can help initiate dialogue in scientific
circles and the wider community, about the effects of vision loss.
Utilizing the immediate, visual impact of art through public exhibitions can bring
the message about macular dystrophy to wider audiences. This message, which
vividly relates the impact of vision loss as it is lived and experienced, can be
readily understood by anyone who attends exhibitions. The outcomes of this
research project can be easily accessible, and reach beyond the scope of the
academic arena. The value of this research project is in the way it reaches out
across the community, initiating dialogue about low vision and blindness,
increasing awareness in the community, and assisting in building bridges of
understanding between those with low vision, those with blindness, and those
with ‘normal’ vision.
This project may also be of interest and relevance to those working in eye
health, medical research and disability services, specifically those working in
the field of ophthalmology, optometry and orthoptics. These healthcare
professionals can then better explain this form of degeneration of vision to their
patients, showing them, with the use of visual images, how their disease might
appear as it progresses. This will provide a stimulus for discussion between
health care professionals and their patients.
289
Those involved in the rehabilitation and training of people with low vision and
blindness, such as mobility instructors, occupational therapists and counsellors
may also draw insight from the outcomes of this research project.
Above all, it is hoped this research project can show that those with vision loss
can have a place in the discourse of such medical conditions, and that despite
obstacles, each person with vision loss or any other disability, still carries the
potential to transcend impediments and to achieve their goals.
Research projects such as this have also opened the way to trans-disciplinary
dialogue, as seen in the work of Paul Hackett and Robin Hawes who explore
territories between art and neuroscience. A further project by Otago
University, and the Dunedin School of Art in a pairing of artists and
neuroscientists that resulted in a 2013 exhibition by the participating artists
that was inspired by the work of their scientific partners.446 The project points
to a desire to not only heal the ‘disciplinary fragmentation’ and ‘academic
isolation’ that can occur between disciplines, but also shows the growing
interest in art-science partnerships for the benefit of social dialogue,
community engagements, and the need to communicate research findings to a
wider audience. This art-based research project will contribute to this growing
area of research.
446 See Howard, Sunkita, and Jenny Rock. 2014. "SEEING SCIENCE "THROUGH NEW EYES"
IN AN ART AND NEUROSCIENCE COLLABORATION." Scope: Contemporary Research
Topics (Art & Design) 9:104-107. See an article on the project here:
http://www.odt.co.nz/campus/university-otago/260990/neuro-art-brain
290
9 Appendices
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9.1 Artworks developed for this research
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294
9.1.1 PORTRAITS (FACELESSNESS)
9.1.1.1 Children on the hammock
TITLE: Children on the hammock, 2012

MEDIA: Digital work
SIZE: Various
INFORMATION: Photophobia and the strong summer sun conspire to make it
seem as if though the children have run away, leaving only their feet and the
garden behind them.
CHARACTERISTICS: Absence, filling in, photophobia
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296
9.1.1.2 Out to dinner
TITLE: Out to Dinner, 2012

MEDIA: Digital work
SIZE: varioius
INFORMATION: Birthday celebrations in the dim light at the restaurant, and I
can’t see the smiles and happiness on my daughter’s beautiful faces.
CHARACTERISTICS: Absence, filling in
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298
9.1.1.3 Portrait of Cesca
TITLE Portrait of Cesca, 2015

MEDIA: Pigment, Oil on canvas
SIZE: H 8 inches x W 10 inches
INFORMATION: It is difficult to discern Francesca’s features as the
characteristics of movement and pulsation seem to cause skin coloured
pigment to flicker across her face and into the background.
CHARACTERISTICS: Absence, filling in, movement, pulsation
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300
9.1.1.4 Portrait of Jill
TITLE Portrait of Jill, 2015

SIZE: H 16 inches x w 12 inches
INFORMATION: Professor Jill Keefe in her office. The characteristics of
movement and pulsation seem to scatter background pigment across her
features and clothing.
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302
9.1.1.5 Portrait of Germana
TITLE Portrait of Germana, 2015

INFORMATION: My friend sits near me, allowing me to occasionally catch a
glimpse of her features as she moves her head in animated conversation. Once
again however, the characteristics of movement and pulsation are ever
present, obscuring much of her face.
303
304
9.1.1.6 Portrait of Paul
TITLE Portrait of Paul, 2016

SIZE: H 16 inches X W 12 inches
INFORMATION: My friend sits with his back to the window causing the incoming
light to aggravate the symptoms of my vision loss. The greenery of the garden
behind him engulfs his facial features.
CHARACTERISTICS: Absence, filling in, movement, pulsation, photophobia
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9.1.1.7 Van Gogh self portrait as I see him
TITLE: Van Gogh Self Portrait as I see him, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: Van Gogh’s self portrait, showing the effect high contrast
seems to have on the symptoms of my central vision loss. The face seems less
obscured by the scotoma and perhaps more scrambled. It was in my
comparison of Van Gogh’s portrait with that of the Mona Lisa that I realised
tonal values and contrast can alter the way I see.
CHARACTERISTICS: Absence, filling in, movement, pulsation, contrast
307
308
9.1.1.8 Mona Lisa as I see her
TITLE: Mona Lisa as I see her, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: In contrast to the previous self portrait by Van Gogh, the Mona
Lisa seems to melt invisibly into the background, most likely due to the low
contrast and tonal values of the painting.
CHARACTERISTICS: Absence, filling in, movement, pulsation, tone
309
310
9.1.1.9 Dr Amsler wearing his grid
TITLE: Dr Amsler wearing his Grid, 2012

MEDIA: Pencil on paper, digital work on paper
SIZE: H 19 inches x W 13 Inches (Originak pencil drawing)
H 19 inches x W 13 Inches (Digital print on archival rag paper)
INFORMATION: Dr Marc Amsler was instrumental in diagnosing macular
degeneration in the mid 20th century. This work investigates how grids could
be used to map the progression of disease using Dr Amsler’s face as a marker.
CHARACTERISTICS: Absence
311
312
9.1.1.10 Progression of Stargardt’s disease over Amsler Grid
TITLE: Progression of Stargardt’s Disease over Amsler Grid, 2012

MEDIA: Digital works
SIZE: various
INFORMATION: This selection of digital works explores the progression of
macular degeneration over Dr Marc Amsler’s face.
CHARACTERISTICS: Absence, entropy, metamorphopsia
313
314
9.1.1.11 Portraits of Dr Stargardt (1) and (2)
TITLE: Portrait of Dr Stargardt, 2012 1, Portrait of Dr Stargardt, 2012, 1 and 2

MEDIA: Pencil on archival rag paper (1),
Digital print on torn archival rag paper (2)
SIZE: H 19 inches x W 13 Inches each
INFORMATION: German Ophthalmologist Dr Karl Stargardt gave his name to a
form of hereditary juvenile macular degeneration. In this series of works, a
pencil drawing of Dr Stargardt is used to illustrate the progression of the disease
over time, by progressively ripping the paper.
CHARACTERISTICS: Absence, destruction, rupture, entropy
315
316
9.1.1.12 Progressive destruction over Dr Stargardt’s face
TITLE Progressive destruction caused by juvenile macular degeneration over Dr

Stargardt’s face, 2012
MEDIA: Pencil and paper, digital images on archival rag
SIZE: various
INFORMATION: This series of works explores the progressive destruction and
rupture of the visual field caused by Stargardt’s disease.
CHARACTERISTICS: Absence, destruction, rupture, entropy
317
318
9.1.2 SELF PORTRAITS
9.1.2.1 Self portrait
TITLE: Self Portrait, 2015

INFORMATION: A self portrait in oil paint, showing the effects of pulsation and
movement across the features of my face.
CHARACTERISTICS: Absence, pulsation, movement
319
320
9.1.2.2 Measuring the scotoma, mapping the void
TITLE: Measuring the Scotoma, Mapping the Void, 2015

MEDIA: Digital work
SIZE: various
INFORMATION: With the aid of the camera on my iPad, I try to find how far
apart I can move my arms to keep them visible outside the boundaries of the
scotoma. Central vision loss means I can’t see my own face at all as I begin this
exercise. For a bit of fun, I place a self-portrait into the picture hanging on the
wall in the background, a way of noting the irony of observing my own vision
loss.
CHARACTERISTICS: Absence, filling in, scale
321
322
9.1.2.3 Self portrait with iPad
TITLE: Self-Portrait with iPad, 2015

MEDIA: Mono print on canvas
INFORMATION: A preparatory exploration for the self portrait series using the
camera of my iPad to observe the self at a distance.
CHARACTERISTICS: Absence, scale
323
324
9.1.2.4 Self portrait in a purple jacket
TITLE: Self-Portrait in a Purple Jacket, 2015

MEDIA: Mono print on Arches 88 rag paper
SIZE: H 8 inhes X W 6 inches
INFORMATION: A very early exploration of the use of my prints in the research
project. A quick and vigorous pressing of the paper gave the scrambled effect
similar two sensations of movement experience with vision loss.
CHARACTERISTICS: Absence, pulsation, movement
325
326
9.1.2.5 Self portrait by the window
TITLE: Self Portrait by the window, 2015

MEDIA: Mono print and oil on Arches 88 paper
SIZE: H 8 inches x W 8.5 inches
INFORMATION: This work explores the sometimes soft and painterly effects of
seeing with low vision. I try to show the effects of photophobia, movement and
pulsation through a combination of monoprinting and oil paint on paper.
CHARACTERISTICS: Absence, pulsation, movement, photophobia
327
328
9.1.2.6 Self portrait with iPhone 1
TITLE: Self Portrait with iPhone One, 2015

MEDIA: Giclee print on Archival Rag
INFORMATION: This work forms part of the series which explores observing the
self in the mirror through the prism of low vision. Digitally reworking the image
shows the predominant characteristic of absence, which seems to supersede
movement and pulsation, creating a sense of stillness and contemplation.
Despite using digital tools, the effect of the gentle gradation from absence to
the periphery was difficult to achieve.
329
330
TITLE: Self-Portrait with iPhone Two, 2015

INFORMATION: This study in the mirror explores the absence of self while trying
to observe the self and capturing the moment with the iPhone camera. The face
is still completely obscured by the scotoma while the iPhone remains visible in
the periphery.
331
332
TITLE: Self Portrait with iPhone Three, 2015

INFORMATION: Reaching out into the void of the scotoma, watching as the
fingers disappear into the absence, playing with the mirror, reflections and
nothingness. The camera catches the moment of observing the observing.
333
334
9.1.2.9 Blind is the new black
TITLE: Blind is the New Black, 2015

MEDIA: Digital work
SIZE: various
INFORMATION: This work contrasts with the other self portraits. Instead of
exploring how I see the world, I contemplate how the world might see me, and
how the world might see low vision and blindness. I play on the identity of being
a woman with low vision or legal blindness, and reiterate the line “blind is the
new black” derived from an episode of the British television sitcom, Absolutely
Fabulous (which I Photoshopped onto my dress)
335
336
9.1.2.10 Self portrait in the mirror
TITLE: Self Portrait in the Mirror, 2014

MEDIA: Digital work
SIZE: Various
INFORMATION: An observation in the mirror catches the difficulty in being able
to see my own image. Moreover I cannot see the instrument (the iPhone) with
which I capture this moment of self observation.
337
338
9.1.3 PET PORTRAITS
9.1.3.1 Lizzie in the fog
TITLE: Lizzie in the Fog, 2014

MEDIA: Still frame from Digital work
SIZE:
INFORMATION: This is a still image from a short animation produced in 2014.
The afternoon glare is strong and Lizzie’s white coat also blends with the white
tiles behind her.
339
340
9.1.3.2 Lizzie’s disappearing head
TITLE: Lizzie’s Disappearing Head, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: It was late at night, and the kitchen was dim. I could sense my
dog was looking up at me but I couldn’t see her face, although the cast of her
shadow was still visible on the floor.
341
342
9.1.3.3 Stills of Lizzie walking out of scotoma
TITLE: Lizzie Walking out of Scotoma, 2012

MEDIA: still from the animation
SIZE:
INFORMATION: This series of still frames shows how the dog trots towards me,
disappearing into and out of the scotoma.
CHARACTERISTICS: Erasure, filling in
343
344
9.1.3.4 Walking the dog
TITLE: Walking the Dog, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: On daily walks with the dog I was able to observe the myriad
tricks played on me by my low vision. On this occasion, I noticed the filling in
phenomena momentarily gave the appearance that I was walking half a dog.
CHARACTERISTICS: Erasure, filling in
345
346
9.1.3.5 Max melting into the mat
TITLE: Max Melting into the Mat, 2013

MEDIA: still from animation
SIZE:
INFORMATION: One day I saw the cat on the mat, but only half his body was
showing, the rest had melted into the bright floral fabric, aided by the scotoma
and the filling in phenomenon.
347
348
9.1.4 ACTIVITIES OF DAILY LIVING
9.1.4.1 Holding the blind spot
TITLE: Holding the blind spot, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: I stretch out my arm and see my fingers disappear, in such a
way as to make it seem that I am holding the blind spot in my hand.
349
350
9.1.4.2 Cutting the tomato
TITLE: Cutting the Tomato, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: The tomato disappears, along with most of the knife. The
colour of the chopping board fills in the absent space, and a few hints of red
indicate the presence of tomato.
351
352
9.1.4.3 Cutting chicken fillets
TITLE: Cutting Chicken Fillets, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: Cutting chicken fillets for dinner – fingers, chicken and knife fall
into the range of the scotoma, while the filling in process creates the impression
that I can ‘see’ the chopping board and cling film underneath.
353
354
9.1.4.4 Seven crackers on a red board
TITLE: Seven Crackers on a Red Board, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: There are seven crackers on the red board, but if I look at one
of them the cracker hides perfectly under the scotoma, while the filling in
process makes it appear as if there is no cracker at all.
355
356
9.1.4.5 The case of the missing biscotti
TITLE: The Case of the Missing Biscotti, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: It looks to be a full tray of freshly baked little biscuits, but one
is hiding under the scotoma, aided by the filling in process and the icing sugar
dusted all around.
357
358
9.1.4.6 The coffee cup
TITLE: The Coffee Cup, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: The coffee cup fits perfectly into the area of the scotoma.
Activities of daily living bring a constant awareness of vision loss, even with the
simplest of tasks.
CHARACTERISTICS: Absence, filling in, scale
359
360
9.1.4.7 The case of the missing tomato
TITLE: The Case of the Missing Tomato, 2012

MEDIA: Digital work
SIZE: various
INFORMATION: This work explores the characteristic of absence, as the
scotoma conceals the third tomato, leaving a trace of red pigment in its wake.
361
362
9.1.4.8 Bowl and spoon
TITLE: Bowl and Spoon, 2016

SIZE: h; 8 inches x W 10 inches
INFORMATION: Half the bowl is missing as a result of the scotoma, movement
and pulsation, while the spoon remains relatively intact in the periphery.
363
364
9.1.4.9 Plate, knife and fork
TITLE: Plate, Knife and Fork, 2016

INFORMATION: The scotoma and the characteristics of movements and
pulsation conceal the remainder of food on the plate.
365
366
9.1.4.10 The Vegemite jar
TITLE: The Vegemite Jar, 2016

INFORMATION: The Vegemite jar sits on the kitchen counter partially
concealed by the scotoma. Pigment scatters across the surface of my visual
field, the characteristics of movement and pulsation give the impression of
something exploding.
367
368
9.1.4.11 The cup
TITLE: The Cup, 2016

INFORMATION: The cup sits on the bench partially concealed by the scotoma.
Once again, the scene is interrupted by the characteristics of movement and
pulsation scattering pigment across the visual field.
369
370
9.1.4.12 The Cheerios box
TITLE: The Cheerios Box, 2016

INFORMATION: The Cheerios box is obscured by the scotoma, while the
characteristics of pulsation and movement scatter pigment across the visual
field.
371
372
9.1.5 TRAVELLING
9.1.5.1 St Kilda Rd
TITLE: Saint Kilda Road, 2013

MEDIA: Still from an animation
SIZE:
INFORMATION: Looking north from St Kilda Road, the oncoming traffic shoots
out from the field of vision loss. Blurriness in the peripheral field and the
characteristics of movement, pulsation and photophobia, add to the feeling of
vulnerability and danger while standing at the tram stop.
373
374
9.1.5.2 Waiting for the tram
TITLE: Waiting for the tram, 2013

MEDIA: still from an animation
SIZE:
INFORMATION: This work tries to capture the visual effects caused by
photophobia, movement and pulsation, as I wait for the tram.
375
376
9.1.5.3 Waiting for the tram with and without background
TITLE: Waiting for the tram with and without background, 2013
MEDIA: Stills from an animation
SIZE:
INFORMATION: These works show the effects of central vision loss (on the left),
while, the image on the right shows the scotoma and other characteristics
without the background, creating a ‘stand-alone’ portrait of the effects of vision
loss itself. The red dot indicates where the tram actually is as it approaches,
although in reality I can’t locate the tram because of the vision loss.
377
378
9.1.5.4 Tram sign at Federation Square
TITLE: Tram Sign at Federation Square, 2013

MEDIA: Digital work
SIZE: various
INFORMATION: The perfect blue sky helps demonstrate the effect of the filling
in phenomena. As I try to look at the tram sign directly it disappears into the
void, and blue sky seems to fill in the absence.
379
380
9.1.5.5 Capturing the scotoma with a grid
TITLE: Capturing the Scotoma with a Grid, 2013

MEDIA: still from an animation
SIZE:
INFORMATION: Following on from an idea by Lee Allen in his study of his own
vision loss caused by macular degeneration, I try to capture the entoptic effects
pf central vision loss by rapidly blinking in order to ‘see’ the eye disease itself. I
overlay the image with a grid.
381
382
9.1.6 STREETSCAPES
9.1.6.1 St Patrick’s Cathedral spire, Melbourne
TITLE: St Patrick’s Cathedral Spire, Melbourne, 2015

SIZE: H 8.5 inches x W 7.5 inches
INFORMATION: The cathedral spire disappears and reappears as it emerges
from the borders of the scotoma. A feint orange ring seems to appear above
the church.
383
384
9.1.6.2 Reading the street sign
TITLE: Reading the Street Sign, 2013

MEDIA: Digital work
SIZE: various
INFORMATION: While it is possible to discern that there is a sign on the road,
its message is obscured by the scotoma.
385
386
9.1.6.3 Federation Square 1
TITLE: Federation Square One, 2013

SIZE: H 6 ¾ inches X 9 inches
INFORMATION: The streetscape at Federation Square, Melbourne. Open space,
an abundance of light and seemingly low contrast between the paving and
buildings make it a difficult space to negotiate with low vision. This work
explores the effects of glare, movement and pulsation.
CHARACTERISTICS: Absence, filling in, movement, pulsation, photophobia, tone
387
388
9.1.6.4 Federation Square 2
TITLE: Federation Square Two, 2013

SIZE: H 7 ½ inches X W 9 ¾ inches
INFORMATION: The streetscape at Federation Square, Melbourne. The mono
print process enhances the appearance of ‘static’ in the visual field – where
pigment has not properly adhered to the paper, scattering speckled light over
the darkness in the periphery.
389
390
9.1.6.5 Federation Square entrance 1
TITLE: Federation Square Entrance One, 2013

INFORMATION: Finding the entrance to the interior of Federation Square,
Melbourne, is made more difficult by the combination of the scotoma,
photophobia, movement, pulsation and a lack of contrast.
391
392
9.1.6.6 Federation Square entrance 2
TITLE: Federation Square Entrance Two, 2013

SIZE: H 10 inches X W 7 ½ inches
INFORMATION: Approaching the entrance to Federation Square interior. The
combination of glare, movement, pulsation and the scotoma, makes it difficult
to see both people and doors.
393
394
9.1.6.7 Stairs at Federation Square
TITLE: Stairs at Federation Square, 2013

SIZE: H 10 inches X W 7 ½ inches
INFORMATION: Descending the stairs into the interior spaces of Federation
Square, Melbourne. The effects achieved by the mono print heighten the
‘static’ across the visual filed. Low light, a difficulty in adjusting to the low
contrast space and the scotoma, all conspire to make it more difficult to
negotiate the stairs.
395
396
9.1.6.8 Atrium of Federation Square
TITLE: Atrium of Federation Square, 2013

INFORMATION: The atrium at Federation Square, Melbourne. The dim light,
low contrast, and large interior makes it a more difficult space to negotiate with
low vision.
397
398
9.1.6.9 Interior of Federation Square
TITLE: Interior of Federation Square, 2013

INFORMATION: The interior of Federation Square, Melbourne. The dim light,
low contrast, and large interior makes it a more difficult space to negotiate with
low vision. This mono print explores the effect of glare from a distant light
source that is amplified by the effects of the scotoma.
399
400
9.1.6.10 Federation Square streetscape 1
TITLE: Federation Square Streetscape One, 2013

SIZE: H 6 inches X W 7 ¼ inches
INFORMATION: Looking across Federation Square, to St Paul’s Cathedral,
Melbourne. This work explores the static light effects in the peripheral filed
clearly visible against the dark background, while also showing the effects of
glare, and the orange ring that is so often evident in my vision.
401
402
9.1.6.11 Federation Square streetscape 2
TITLE Federation Square Streetscape Two, 2013

SIZE: H 7 ½ inches X W 10 inches
INFORMATION: Federation Square in low light. Blue evening sky seems to
colour the scotoma, while movement and pulsation enhance the flickering pin
points of light around the periphery.
403
404
9.1.6.12 Bus stop
TITLE: Bus Stop, 2013

MEDIA: Digital work
SIZE: various
INFORMATION: Waiting for the bus. The scotoma and blurry vision, combined
with glare, add to the challenge of trying to signal the oncoming bus.
CHARACTERISTICS: Absence, filling in, , photophobia
405
406
9.1.7 TEXTS (WORDLESSNESS)
9.1.7.1 Reading the eye chart
TITLE: Reading the Eye Chart, 2013

SIZE: H 11 inches X W 8 ¼ inches
INFORMATION: The Eye Chart hanging in a corridor at the Centre for Eye
Research Australia. Viewing the chart (which is quite large) from several feet
away, I still can’t discern many letters, but the scotoma, and feint orange spots
are ever present.
407
408
9.1.7.2 iPhone agreement
TITLE: iPhone Agreement, 2013

INFORMATION: This mono print shows the difficulty in reading text messages.
The scotoma and feint orange ring obscure the terms and conditions of the
agreement.
409
410
9.1.7.3 Ticketing pad
TITLE: Ticketing Pad, 2013

MEDIA: Digital work
SIZE: various
INFORMATION: Instructions, prompts, messages, notices – all the everyday
things that go along with taking public transport in a big city – are rendered
practically invisible by the effects of low vision.
411
412
9.1.7.4 Text with scotoma and orange ring 1
TITLE: Text with Scotoma and Orange Ring (one), 2014

MEDIA: Mono print on Arches 88 paper
SIZE: H 15 ½ inches X W 11 ½ inches
INFORMATION: This mono print explores the effects of the scotoma when
reading text. Words in the periphery are difficult to discern, but the feint orange
ring is visible.
CHARACTERISTICS: Absence, filling in, metamorphopsia
413
414
9.1.7.5 Text with scotoma and orange ring 2
TITLE: Text with Scotoma and Orange Ring (two), 2014

MEDIA: Mono print on Arches 88 paper
SIZE: H 15 ½ inches X W 11 ½ inches
INFORMATION: This mono print explores the effects of the scotoma when
reading text. Words in the periphery are difficult to discern, but the feint orange
ring is visible.
415
416
9.1.7.6 Computer screen and finger
TITLE: Computer Screen and Finger, 2015

MEDIA: Digital work
SIZE: various
INFORMATION: Holding my finger over the text on a computer screen. I note
that the finger is obscured by the scotoma, which is now a field of blue, but the
filling in phenomena tries to compensate for the missing rows of lettering by
‘inserting’ some letters into the field of absence. I know this is a ‘trick of the
mind’ because if I could really see something, I should be able to see a part of
my finger, not black lettering.
417
418
9.1.8 ANIMATIONS
9.1.8.1 Taking Lizzie for a walk
TITLE: Taking Lizzie for a Walk, 2012

MEDIA: Animation
SIZE:
INFORMATION: Taking the dog for a walk and exploring the effects of the
scotoma as she ‘disappears’ in and out of view.
CHARACTERISTICS: Absence, filling in, erasure
419
420
9.1.8.2 Bus movie
TITLE: Bus Movie, 2014

MEDIA: Animation
SIZE:
INFORMATION: This animation explores the changing light and movement
while travelling on a bus with low vision.
CHARACTERISTICS: Absence, filling in, movement, pulsation, erasure
421
422
9.1.8.3 Driving with Bev
TITLE: Driving with Bev, 2014

MEDIA: Animation
SIZE:
INFORMATION: This work explores the experience of being a passenger in a car
with low vision.
423
424
9.1.8.4 St Kilda Road animation
TITLE: St Kilda Animation, 2014

MEDIA: Animation
SIZE:
INFORMATION: This work explores waiting for a tram on a busy road, with low
vision.
425
426
9.1.8.5 Waiting for the bus animation
TITLE: Waiting for the bus animation, 2013

MEDIA: Animation
SIZE:
INFORMATION: This work explores waiting for the bus near the entrance to the
freeway, where cars are observed driving through the scotoma.
427
428
9.1.8.6 On the Overpass, with oncoming traffic
TITLE: On the Overpass, with oncoming traffic, 2013

MEDIA: Animation
SIZE:
INFORMATION: On the bus, with traffic coming down under the bridge. Cars
and trucks disappear into the scotoma.
429
430
9.1.8.7 Max animation
TITLE: Max melting into the mat Animation, 2013

MEDIA: Animation
SIZE:
INFORMATION: This work explores the somewhat bizarre appearance of half
the cat sitting on the bright floral mat, as a result of the scotoma and the filling
in process. After a few moments, he gets up and leaves. I tried to recapture the
strange effect of the cat emerging from the mat, intact and in one piece again.
431
432
9.1.8.8 Hand waving over grid animation
TITLE: Hand Waving Over Grid Animation, 2014

MEDIA: Animation
SIZE:
INFORMATION; This work explores the discovery of a ‘ghosting’ effect which I
experienced as I waved my hand across a grid. I noticed how the grid seemed
to appear over the skin as I moved.
CHARACTERISTICS: Absence, filling in, movement, pulsation, erasure, ghosting
433
434
9.1.8.9 Hand moving through blind spot animation
TITLE: Hand Moving Through Blind Spot Animation, 2014

MEDIA: Animation
SIZE:
INFORMATION: This work explores the predominant characteristic of erasure,
as I wave my hand in and out through the blind spot.
435
436
9.1.8.10 Capturing scotoma - Federation Square sign animation
TITLE: Capturing Scotoma - Federation Square Sign Animation, 2013

MEDIA: Animation
SIZE:
INFORMATION: This work tries to mimic the effect of rapid blinking in an effort
to try and ‘see’ the scotoma.
437
438
9.1.8.11 Cesca on the swing animation
TITLE: Cesca on the Swing Animation, 2013

MEDIA: Animation
SIZE:
INFORMATION This work explores the ‘disappearing’ effect as my daughter
swings in and out of the blind spot.
439
440
9.1.8.12 Cesca on the swing with blue background showing ‘filling in’ only
TITLE: Cesca on the swing with blue background showing ‘filling in’ only, 2013
MEDIA: Animation
SIZE:
INFORMATION This work takes the previous animation footage and removes
the background setting to show the scotoma and filling in effects.
441
442
9.1.8.13 Lizzie in a fog animation
TITLE: Lizzie in a Fog Animation, 2014

MEDIA: Animation
SIZE:
INFORMATION: This work explores the effects of glare in combination with the
scotoma and low contrast as the dog blends into the background.
CHARACTERISTICS: Absence, filling in, movement, pulsation, erasure, tone
443
444
9.1.8.14 Dr Stargardt animation
TITLE: Dr Stargardt Animation, 2014

MEDIA: Animation
SIZE:
INFORMATION: This work plays on the destructive effects of Stargardt’s disease
over time, as Dr Stargardt’s face is gradually ripped apart by the disease.
CHARACTERISTICS: Erasure, destruction, rupture, entropy
445
446
9.1.8.15 Teapot animation
TITLE: Teapot Animation, 2013

MEDIA: Animation
SIZE:
INFORMATION: This work is an animation of an early series of paintings
exploring the effect of vision loss over time in oil paint.
CHARACTERISTICS: Absence, filling in, erasure
447
448
9.2 Goldmann field tests
Goldmann field tests 6/9/2013
449
450
9.3 Retinal images
Retinal images taken 25/8/2014. (Courtesy OPSM)
451
452
9.4 OCT scan
OCT Scan taken April? 2012 showing scotoma in image 1 and side view of retina
image 2
453
454
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INTO THE VOID:

EXPLORING THE EXPERIENCE OF VISION LOSS THROUGH VISUAL ART

ERICA JOAN TANDORI

Submitted in partial fulfilment of the requirements of the degree of

VICTORIAN COLLEGE OF THE ARTS

THE UNIVERSITY OF MELBOURNE

This research project centres on a personal experience of vision loss, through

The resultant body of artworks is comprised of photographs, digital works,

A selection of these artworks has been exhibited as a component of the

This is to certify that:

Erica Joan Tandori

Signature of Supervisor Signature of Supervisor

Prof Su Baker Prof Jill Keeffe

The information in this thesis is distributed on an ‘as-is’ basis, without warranty.

All rights reserved. No part of this thesis may be reproduced, stored in a

ã 2016 Erica Joan Tandori

Age Related Macular AMD occurs when the Macula deteriorates

Amsler Grid A series of grids developed by Marc Amsler

Autosomal Recessive Refers to the pattern of inheritance of

Central Vision The small area of vision at the centre of the

Circadian Rhythms Also known as the 'body clock' which helps

Cortical Completion Refers to the phenomenon of the filling-in of

Dark Adaptation The ability of the photoreceptors of the eye

Dark Choroid The Choroid is the layer of the eye between

Entropy An altering or deterioration of states, from

Fluorescein Angiography A medical procedure in which fluorescent

Fovea A small central pit located at the centre of

Foveola An area at the centre of the Fovea,

Free Radicals Highly reactive molecules which have been

Fundus Flavimaculatus Also known as Stargardt's Disease,

Functional Magnetic A procedure that measures brain activity by

Goldmann Spherical A machine enabling the measurement of

Humphrey Visual Field A machine enabling the testing of various

Lateral Geniculate Nucleus A part of the visual pathway that receives

Legal Blindness A level of vision loss that indicates a drop in

Low Vision Defined by the World Health Organization

Macular Dystrophy or An inherited eye disorder, which affects the

Mach Bands An optical illusion consisting of grey bands

Metamorphopsia Is characterized by the perception of

Metamorphosia Is characterized by the perception of

Ophthalmology A medical specialization that deals with the

Palimpsest Usually the erasing or wiping away of words

Peripheral Vision Denotes what is seen in our side vision,

Retina The light-sensing layer of photo receptive

Retinal Ganglion Cell A type of neuron located near the surface of

Retinal Pigment The pigmented cell layer adjacent to the

Saccades Very rapid eye movements of the Fovea that

Scotoma A blind spot or partial loss of vision in an

Stargardt’s Disease (STGD) A genetic form of juvenile Macular

Total Blindness The inability to see light or forms with either

Visual Acuity A standardized clinical measurement of the

Visual Cortex The part of the brain processing information

I’m standing in my kitchen, staring at a crumb. A white crumb on a blue counter.

This document is not an autobiography, it is a dissertation, but it was precisely

At the time of my diagnosis, no eye health care professional I consulted could

1 Introduction to the Project ................................................................... 1

SECTION 1: EYE AND VISION .............................................................................. 7

2 Background - Locating the Void ............................................................. 9

3 Symptoms in the Visual Field .............................................................. 49

SECTION 2: ART ........................................................................................... 123

5 Expanding on methodology issues .................................................... 173

SECTION 3: VISUAL PERCEPTION ..................................................................... 205

6 Grids ................................................................................................. 207

7 Visual Perception .............................................................................. 243