Indian Edition Published by NIEPMD.

Copyright © 2020
All rights reserved. No part of this publication may be reproduced, distributed or
transmitted in any form or by any means, including photocopying , recording or other
electronic and mechanical methods, without prior written permission of the publisher, except
in the case of brief quotations embodied in critical reviews and certain other non-commercial
uses permitted by copyright law. For permission requests, write to the publisher, addressed
“Attention : Permissions Coordinator “to the address below
NIEPMD, East Coast Road, Muttukadu, Kovalam Post Chennai - 603112, Tamil Nadu, India.
Ph: 044- 27472113, 27472046 Email: niepmd@gmail.com
ISBN: 978-81-946509-4-2
Any resemblance to actual person, living or dead, or actual events is purely coincidental
First Impression, 2020:
R&D Team
Dr. Himangshu Das, Director, NIEPMD, Chennai.
Dr.A.Amarnath, HoD, Social Work & Research In Dr.B.Amutha, Senior Consultant, Research &
charge, NIEPMD, Chennai. Development, NIEPMD, Chennai.
Chief Investigator Investigator
Dr.Himangshu Das, Director, NIEPMD, Chennai. Shri. D.Stalin Arul Regan, Special Teacher, NIEPMD,
Chennai
Chapter Contributors
Shri. D.Stalin Arul Regan, Special Teacher, NIEPMD, Smt.Anuradha Bagchi, Director of Education, Helen
Chennai Keller institute for Deaf and Deafblind, Mumbai.
Shri.Uttam Kumar, Director of Programmes, Sense
International India, Ahmedabad. Dr.Jasmer Singh, Asst. Professor. NIEPVD, Dehradun.
Shri.Atul Jaiswal, Postdoctoral Fellow in Vision
Science, University of Montreal, Canada;
Smt.Dipti Karnad, Principal Clarke School for the
Deaf and Mentally Retarded, Chennai.
Advisory Team
Shri.S. Sankara Narayanan, Deputy Registrar, Dr.K.Balabaskar, HoD, Adult Independent Living,
NIEPMD, Chennai. NIEPMD, Chennai.
Shri. Rajesh Ramachandran, Rehabilitation Officer, Smt J.AgnesSironmani., R&D Coordinator, NIEPMD,
Social Work, NIEPMD, Chennai. Chennai.
Credits
Ministry of Social Justice& Empowerment, GoI.
Department of Empowerment of Persons with Disabilities (DIVYANGJAN), GoI.
NIEPMD for Administration Support.

i
 INDIVIDUAL WITH DEAF BLINDNESS: PERCEPTION ANALYSIS

Developed & Published by

NATIONAL INSTITUTE FOR EMPOWERMENT OF PERSONS WITH

MULTIPLE DISABILITIES (Divyangjan), (NIEPMD)

(Dept. of Empowerment of Persons with Disabilities (Divyangjan), Ministry

of Social Justice & Empowerment, Govt. of India)

ii
Preface
An individual with deafblindness has a combined loss of vision and hearing. Neither
the deafblind individual’s vision nor hearing can be used as a primary source of accessing
information. Perception is the way we interpret information gained through the senses. When
the two major senses of vision and hearing are impaired, perception in the deafblind is
affected. Their perception of the world is different when both their auditory and visual
sensory inputs are blocked. The effects of deaf blindness are varied with different challenges
depending on the degree and onset of the two disabilities. Deafblind individual’s perception
and experiences are based on their residual auditory and visual senses, touch and other
sensory experiences. The term deafblind has mentioned in Rights of Persons with Disabilities
2016. The demand for service needs and significant successful individuals with deafblindness
are seen in the community. It is important to understand their world for better
accommodation in the inclusive society.

The life of individuals with deafblindness may involve many people, however the
significant contributors in shaping their life are the parents, special teachers and their
siblings. Through the interview from parents of children with deafblindness, the chapter
contributors have explored various aspects related to the child rearing, challenges and tough
times faced by them in educating the child and successfully including them in the society.
Their information and thoughts would be helpful to guide parents and motivate in
rehabilitation programs offered for children with deafblindness. Majority of individuals with
deafblindness spent their maximum time with their parents, hence it is very important to
understand their relationship dimensions in order to guide the parents who enters new to
rehabilitation program.

In addition to the parents, the teacher plays a major role in rehabilitation of

individuals with deafblindness. The teachers with help of parents, understands the individual
talents and needs of children with deafblindness that forms the foundation of rehabilitation
for individual with deafblindness. It is essential to understand the common perspectives that
prevails amongst the teachers about children with deafblindness and similarly the
perspectives about the teachers of children with deafblindness. The contributors have explored
the current practices, needs and explored possible ways and means to improve the current
status of education of individuals with deafblindness.

We extend our sincere thanks and gratitude to the individuals with deafblindness, the
parents of children with deafblindness, teachers of children with deafblindness and brothers &
sisters of individuals with deafblindness for their contribution by sharing their experiences
and views that enabled the contributors to sum up the perspectives. Our sincere thanks and
gratitude to the Director, NIEPMD, The Deputy Registrar(Admin), the R&D team and staff
for their support and contribution in completion of this project.

iii
 TABLE OF CONTENTS PAGE NO

1. INTRODUCTION 1

2. PERCEPTION OF PARENTS OF CHILDREN OR 7

ADULTS WITH DEAF BLINDNESS
3.PERCEPTIONS OF PROFESSIONALS
19
(WORKING IN THE FIELD OF DEAFBLINDNESS)
ABOUT DEAFBLINDNESS
I. Understanding deaf blindness
II. Abilities of individuals with deafblindness

III. Challenges faced by individuals with

deafblindness

IV. Project planning for education and rehabilitation

of individuals with
deaf blindness

V. Capacity Building and Training

Conclusion

4. PERCEPTION OF SIBLINGS (OF INDIVIDUALS

40
WITH DEAF BLINDNESS) ABOUT DEAF
BLINDNESS
I. Siblings attitudes on children with deafblindness
1.1 Introduction
1.2 Siblings may develop multiple difficulties
1.3 Siblings become overly responsible and independent
1.4 Siblings may feel neglected by parents
1.5 Siblings feel in the dark from parents
1.6 Sibling experience mixed emotions
1.7 The situation provides opportunities for siblings
1.8 Sibling relationships
1.9 Sibling relationships when there is a deafblindness
involved
1.10 Understanding the disability
1.11 Attitude scale
2 Perceptions of siblings about deaf blindness
iv
2.1 Deafblind siblings, relationships
2.2 Perception of siblings on deaf blindness-preliminary
information
2.3 Perception of siblings on deaf blindness -preliminary
information
2.4 Perception of siblings about deaf blindness

3.Teachers opinion on siblings attitude on children

with deafblindness
3.1 assessment:
3.2 direct instruction
3.3teachers opinion on students with deaf blindness
3.4supporting interveners
3.5 service delivery models
5. PERCEPTION OF DEAFBLINDNESS
71

v
 CHAPTER-1
INTRODUCTION
-D.Stalin Arul Regan
Deafblindness is a combination of impairments includes hearing and sight
that affects how one communicates, move aroundand greatly on access to
information. It is a unique disability and not the sum of Vision and hearing loss.
Perception is being aware of something through our senses. It is estimated that we
receive 83% through vision, 11% through hearing, 3% through sense of touch, 2%
though our sense of olfactory (smell) and 1% through our taste buds. The unique
combination of disability results in losing 94% or little less than 94% of their
information received though sense of vision and hearing.
An individual with blindness may greatly utilise the hearing to compensate
the vision loss to some extent to be independent. Similarly, an individual with
hearing loss may use the potential of vision to compensate the hearing loss to some
extent to be independent in their life. The intact ability in one distance sense i.e
vision or hearing helps the individual greatly in perceiving information from the
immediate environment. The loss in both distant senses that predominantly
influence the perception of individuals with deaf blindness often leaves them with
no clues of what is happening around them.
It is very important note that depriving of information shall lead to
misperception of lack of knowledge. Every of piece of information and knowledge is
so essential to form a concept about the existing world. The missing pieces of
information and knowledge may hamper their concept development and overall
functioning. With the limited information inputs to the maturing brain of children
with deafblindness often spend their early life when they don’t get interventional
services with appropriate accommodative strategies. The early intervention plays a
vital role in the concept formation of children with disabilities as their perceptual
abilities are engaged through meaningful interactions. The Impact of Deafblindness
on Learning & Development
The Senses of hearing and vision enable individuals to information about the
world beyond their reach. They are the main avenues for communication, learning
and socialisation. Individually each sense can compensate for the loss or diminished

1
capacity of the other to some extent. However, the combination of simultaneous
hearing and visual impairment has significant consequences for many crucial
aspects of life, including communication, learning, mobility emotional development
and access to information and one’s surroundings.

Problems faced by individuals with Deafblindness without access to support

services:
Without proper access to support services individuals with deaf blindness may
experience:
 Isolation
 Limited opportunities to communicate with others, interact with
surroundings in a meaningful way.
 Difficulty in establishing and maintaining interpersonal relationships
 Very limited number of variety of life experiences.
 Limited access to information needed to anticipate future events
 Deprived of many of the most basic motivations and instincts to explore and
learn, function and engage with the world
 Higher chances of being mislabelled as other categories of disabilities
 Medical problems that can lead to serious developmental delays, further
sensory impairments.
Definition
“Means a condition in which a person may have combination of hearing and visual
impairments causing severe communication, developmental and educational problems”- The
rights of persons with disabilities Act, 2016.
Hearing impairment
(a) “Deaf" means persons having 70 DB hearing loss in speech frequencies in
both ears;
(b) "Hard of hearing" means person having 60 DB to 70 DB hearing loss in
speech frequencies in both ears;
Guidelines for the purpose of assessing the extent of specified disability in a person included
under the Rights of Persons with Disabilities Act, 2016 (49 of 2016)
Vision Impairment

2
 (a) "Blindness" means a condition where a person has any of the following
conditions, after best correction—
(i) total absence of sight; or
(ii) visual acuity less than 3/60 or less than 10/200 (Snellen) in the
better eye with best possible correction; or
(iii) limitation of the field of vision subtending an angle of less than 10
degree.
(b) "Low-vision" means a condition where a person has any of the following
conditions, namely:—
(i) visual acuity not exceeding 6/18 or less than 20/60 upto 3/60 or
upto 10/200 (Snellen) in the better eye with best possible corrections;
or
(ii) limitation of the field of vision subtending an angle of less than 40
degree up to 10 degree.
Guidelines for the purpose of assessing the extent of specified disability in a person included
under the Rights of Persons with Disabilities Act, 2016 (49 of 2016)

Characteristics of Deafblindness
People with deafblindness have their own specific characteristics and needs.
It can affect people of all ages and no two individuals with deafblind are alike. 94%
of the daily information, we work with is received through the senses of sight and
hearing. So, the basics suchas interpretation of the environment, ability to relate and
learning skills are directly affected. Depending on aetiology (Medical Cause), a large
no of people also have additional physical and intellectual disabilities.
A study conducted by Narayanan, JayanthiA; Bruce, Susan M.B on
perceptions of teachers and parents in the united states on the cognitive functioning
of children with severe mental disability and children with congenital deafblindness
reveals that the familiarity plays a role as motivator for children affected by
congenital deafblindness. Further, the teachers and parents of all children noted that
consistency, routine and repetition are important factors of learning.
The survey of Heller, K.W., Gallagher, P.A., & Fredrick, L.D. on parents’
perceptions of relationships between siblings and their brothers and sisters with

3
deaf blindness revealed that there was an unequal roles between siblings and their
brothers and sisters with deaf blindness, with siblings primarily taking on a helping
role. Further, it was reported by parents that unique modifications needed to
effectively interact with individuals who are deafblind were not typically being
implemented by the siblings participated in the study.
Internet plays very crucial role in getting access to information. A systematic
review: investigating the effectiveness of assistive technology to enable internet
access for individuals with deafblindness by Erin Perfect, AtulJaiswal, T. Claire
Davies revealed that utilization of remaining vision was felt to be more important
than utilization of other sensory modalities.

Types of Deaf blindness

Deaf blind individuals do not acquire their combined vision and hearing
impairment in the same way. A person may be
 Born deaf and blind
 Born blind (or acquire blindness first) and later become deaf
 Born deaf (Or acquire deafness first) and later become blind
 Acquire both deafness and blindness later in life.

Challenges faced people with deaf blindness

The Arizona association of Deaf-blind has listed the following challenges:-
 Increased situations to which they have to depend on others in order to feel
safe and informed.
 Learning and using alternative communication strategy
 Becoming aware of and navigating their physical surroundings
 Finding social, living and employment situations that fit their individual
talents, needs & aspirations.
 Attitudinal barriers that complicate their interaction with nondeaf-blind
people
 Feelings of isolation and loneliness
 Obtaining “assistive technologies” to access information

4
The findings emerged from a qualitative study on perceptions of social networks by
adults who are deafblind conducted by Arndt, K., & Parker; navigating adaptations
was a significant part of socialization, Gaps existed in work, family and formal
support networks.
In this book an attempt is made to understand the people with deaf blindness by
understanding the perspectives of parents, siblings, professionals and individuals
with deafblindness.

5
References:

Arndt, K., & Parker, A. (2016). Perceptions of Social Networks by Adults Who Are
Deafblind. American Annals of the Deaf 161(3), 369-383.

Erin Perfect, AtulJaiswal, T. Claire Davies. (2019) Systematic review: Investigating the
effectiveness of assistive technology to enable internet access for individuals with
deafblindness. Assistive Technology 31:5, pages 276-285.

Heller, K. W., Gallagher, P. A., & Fredrick, L. D. (1999). Parents’ Perceptions of Siblings’
Interactions with Their Brothers and Sisters Who are Deaf-Blind. Journal of the Association
for Persons with Severe Handicaps, 24(1), 33–43.

Narayan, JayanthiA ; Bruce, Susan M.B: Perceptions of teachers and parents on the
cognitive functioning of children with severe mental disability and children with congenital
deafblindness, International Journal of Rehabilitation Research: March 2006 - Volume 29 -
Issue 1 - p 9-16
doi: 10.1097 / 01.mrr.0000185946.49186.4e

6
 CHAPTER - 2
PERCEPTION OF PARENTS OF CHILDREN OR ADULTS WITH
DEAFBLINDNESS
-AnuradhaBagchi
Deafblindness is a combination of hearing and sight impairments that affects
how one communicates, access information and move around in their environment.
It is an unique disability and not the sum total of vision and hearing loss. Most
individuals who are deafblind have some residual sight and/or hearing. The
amount of loss in either vision or hearing will vary from person to person. When
both the distance senses are absent or greatly limited, the difficulties are not simply
doubled, they create a unique disability unto itself.
Individuals who are deafblind/MDVI need early intervention and personal
attention to stimulate their understanding and interest in the world around them.
The information that most children pick-up naturally must be deliberately
introduced to learners with dual sensory impairments with or without additional
disabilities.
Effective programs for infants and toddlers with Deafblindness /MDVI are
both student-and family-centred. Student-centred approaches focus on meeting the
student’s individual needs, while a family centred approach focuses on the student
as a member of the family unit. The needs, structure, and preferences of the family
will often drive the delivery of the early intervention services (Ramey & Ramey).
Parents and other family members of children play a central role in the lives of all
children especially those who are Deafblind /MDVI.
Every family has different needs, values and expectations for their child. As
professionals our aim is to give enriching opportunities to learn, to our children, so
we must remember that the child we are serving is first a member of his family.
As educators we must incorporate respect and empathy while working with
the families.
We as professionals must fully consider the innumerable challenges with
which the families have to cope in their day to day life.

7
 Many psychologists believe that following the birth of a child with disability
parents go through a number of identifiable emotional stages as they come to terms
with this new situation which may affect their hopes, ambitions and lifestyle.
When a child with disability specially with multiple disability is born the
parents experience a mental trauma which they have not foreseen and neither they
were prepared for it.
One of the first question that comes to their mind is “why me?”
They feel the need of reassurance.
Initially the parents tend to think more about what they imagine the child
will not be able to do than what he /she may within his/her ability –he/she may do
usually a lot beyond the parents expectation.
Many parents initially feel devastated and need a shoulder to cry upon. They
need someone to talk with specially someone who knows and understands and who
can tell from their own experiences that although there may be frustration, doubts,
sorrows, loneliness there may be constant failures in the beginning but they will
gradually start to see the ray of hope when there will be moments of joy and
happiness as the child starts to blossom.
The child may begin to overcome the challenges with high spirit and success.
Teachers play a very important role in the preschool and school years of a child’s
life. Although they have a wide range of special techniques with which to meet the
needs of children with Deafblindness /MDVI but they can only use their knowledge
and skills extensively when parents share their special understanding of their child.
A real continuing partnership between the professionals and parents is
ensured when there is a clear and accurate understanding of the Parents’ perspective
as well.
Our Initial Thoughts, Feelings and Insights-Parents Perspective.
1. She is a little girl first and is not a disability;
2. We try now to accept our son as he is. He is our kid, not a thing that we have
to "fix.
3. He / She loves to play outside with other children and is curious about life.

8
 4. There is a saying, "We must give our children roots to grow and wings to
soar!" I can't give my son his wings if I only see his disability and not the
person he is.
5. He /she deserves to have a childhood.
6. We should never forget that our arms will form his/her world.
7. We should learn how to interpret and respond to child’s communications in
order to form the bonds that become the foundation for development.

The Professional support and Hand holding we seek-Parents Perspective.

1. Professionals must appreciate family members for what they can offer to their
child and not focus on what they cannot do. A professional should refrain
from bombarding the parents with information that overwhelms them
.Information should be shared slowly.
2. A parent may feel more depressed if a professional makes judgemental
statements about a parents’ ability to care for the child.
3. There is a deep sense of loss that accompanies when a child with disabilities
is born which the parents have not envisioned so they want professionals to
be with them when they take the first step of the journey which is full of
uncertainty.
4. The educators can help the parents to have new dreams for their child which
may be different from the ones parents’ had before the child was born.
5. To acknowledge that the parents are also vital contributors in developing the
IEP.
6. The parents need support to develop a trusting relationship with their child
which can be achieved by learning to communicate effectively with the child
as communication is the basis of all personal relationship.
7. The parents may often share facts about family life which may be private.
Professionals need to respect that privacy.
8. Professionals are expected to be more kind and thoughtful about the umpteen
number challenges with which the parents have to cope so at times their
emotional outbursts should not be misinterpreted.

9
 9. The families are often coping with the pressures of overall of family life and
with the extra effort needed to meet the needs of their special needs child. So
the teacher should have understanding about some of the psychological
aspects of the healing process to be an empathetic provider of services.

In Hindsight we realise- Parent’s perspective

 I wish I had known in the beginning that deafblindness didn't mean the end
of the world for my child. It is just the beginning of an amazing journey
through learning and sharing her story. She teaches us every day that
disabilities cannot slow you down.
 Although we did not choose to have a child who is deafblind the
professionals have willingly chosen to work for children with
Deafblindness/.MDVI. We consider them to be a member of our family. They
are caring, dedicated, talented professionals who have enriched our lives,
empowered us and have helped our children to blossom to their fullest
potential.
 One thing we learnt from our experiences that while we begin our journey
with professionals we need to be “Respectfully Demanding”.
 All families of children with Deafblindness/MDVI deal with anxiety and
grief. Some submerge these emotions while others wear them on their sleeves
everyday throughout their lives. But as the child’s life unfolds and she shows
what she can do you will surely realize how great are your child’s
possibilities. Remember he will have his own contribution to make to the
society he belongs to provided he has a good early intervention and
appropriate education to promote his holistic development.
 Parents go through a grieving process at the birth of a child with
deafblindness /MDVI which includes shock, denial, anger, guilt, depression
and then acceptance. But then the realization comes that we are not alone in
helping the child to blossom, there will be people from different professions
sharing the task with us. You will need their help and must never be afraid to
ask for it.

10
  It is extremely important for the parents to establish networks amongst
themselves to share their experiences. This can also enrich the communication
within the family also.
 New ideas will arise when they are interacting with each other and new
sensitivities to the children’s way of communicating can develop also. When
parents share their experiences and watches how other parents are managing
each will gain a tremendous sense of support and this will enable them to
acquire new skills to give a quality life to their child.
 We learnt from our experiences that when we have a child with
Deafblindness/MDVI for any responsiveness and initiative from the child we
need to look at their body language and their hands (for their hands can be
compared with eyes of a sighted child).When we look at their hands we
found that their hands reflected the signs of attention, longing ,boredom,
excitement and other emotions which were not evident on their faces.
 It can bring joy to the mother when the baby brings his own rewards in
response and becomes a mutual active partner in the love relationship.

Thinking beyond the school life for a fulfilling adulthood -Parents Perspective

 Educational programs must provide services that promote communication

development in students who are deafblind. These must include strategies for
augmentative and alternative communication.
 Problematic and/or challenging behavior may interfere with the inclusion of
the child in the mainstream of everyday life, affect an individual’s ability to
gain employment, engage in meaningful community activities, and have
relationships. Both parents and professionals should realise that all behaviour
communicates, it has a purpose.They should work together to find out what
alternative behaviour can communicate the same message as the problem
behavior instead of just trying to eliminate the behavior.
 Parents and educators must address the need to promote literacy in students
who are deafblind.

11
The vast majority of students who are deafblind are educated in highly segregated
settings. Learners who are Deafblind /MDVI should also be provided with the
opportunity to be educated with their hearing, sighted, and nondisabled peers. They
too have the right to inclusion.
 Youth who are Deafblind/MDVI should be provided with the benefit of real
job experiences and community-based vocational training within their public
school career.
 Transition planning is recognized as essential for achieving post-school
success. It should begin no later than age 14 and continue until the child
leaves school. The student and family must be active and equal partners in
this process.
Our Stories -Parent’s Perspective
1. Shashwat is a 11 years young child with special needs who has been identified
with multiple disabilities and a visual impairment. Shashwat is a happy and loving
child who has challenges in all domains of development: motor/physical,
cognitive, social/emotional, communication/language, and self-help/adaptive.
Shashwat was born in 2008 with complications, but we didn't know what they were.
We knew that he was having a hard time breathing as he was born premature .And
by the time he was about three months old, that's when we noticed that he wasn't
focusing on anything and he wasn't looking at us, he wasn't tracking anything. We
started seeing a lot of doctors and it took a long time and then he was diagnosed
with ROP.Later on he was diagnosed with other disabilities also as mentioned
above.

The day my child was diagnosed as having a disability, I was devastated—

and so confused that I recall little else about those first days other than the
heartbreak. One of the first reactions was denial—“This cannot be happening to me,
to my child, to our family.” Denial rapidly merged with anger; it was triggered by
the feelings of grief and inexplicable loss that one does not know how to explain or
deal with. Fear was another immediate response. What is going to happen to this
child when he is five years old, when he is twelve, when he is twenty-one? What is
going to happen to this child when I am gone?” Then other questions arose: “Will he

12
ever learn? Will he ever go to college? Will he have the capability of loving and
living and laughing and doing all the things that we had planned?”There is also fear
of society’s rejection, fears about how his two elder brothers will be affected,
questions, and concerns about whether my husband and older children will love this
child. But my husband has been very supportive towards me and Shashwat. Both of
us and our children love him with all our heart and soul. During this period of time
when there were so many different feelings of guilt, confusion
rejection andpowerlessness flooded my mind and heart my husband always stood
by me and Shashwat as a pillar of strength.
When Shashwat was 2 years old, we shifted to Mumbai and came to know
about Helen Keller Institute for Deaf and Deafblind through one of my friends.
Things have changed a lot .since then .They have really helped me raise my child.
He is very happy to go to school
He enjoys his time in school, learning new things each and every day. He
participates in a variety of activities and events and enjoy both his teachers and
classmates company. They are having a great time and lots of fun too!”, I will always
be grateful to this wonderful school

At the end of it "With the challenges come the rewards". Sometimes you have
to search your heart for the rewards but they are there if you look for them. We
make time to play, laugh, be silly and just enjoy with him, snuggle with him, engage
with him, dealing with his tantrums and melt downs. And most often manage not to
have a tantrum or melt down ourselves we encourage him to do things and feel
proud when he crosses even a small milestone.

2. I am the mother of Mr. HusnainFakhriKhambati (23 years) and Mr.

AmmarFakhriKhambati (17 years).
My journey bringing up two special kids had been and is challenging. Way back in
1997 I had no knowledge and no support from anyone except my family.
When we would take them out to a public place like hotel, movies or garden, people
would look at them as if they were some aliens coming from some other planet.

13
Seeing them, walking with support they would come and ask me “kya ye chaltanahi
hey?”Such are the people in our society. But I was strong and promised myself that I
don’t care about the society and will try my best to do the best for both my kids.
My husband was always there by myside and that’s one big reason I have been able
to bring up these two brats.
Our doctor. Physiotherapist and Helen Keller Institute for Deaf and Deafblind have
played a very important role to bring them to this stage.
I can proudly say that Helen Keller School is one of the BEST School in Mumbai
which caters to children with all sorts of disability and is ready to work and put in
their efforts to bring out the best in these innocent souls.
Today when they give me meaningful social smile and make sounds to indicate their
basic needs I feel I have achieved a lot in life.
Music is their life, they are so happy and full of life and joy when they hear music.
Ammar my younger one is so fond of water, he can stay for hours in the swimming
pool singing away to glory. But at the same time Husnain, my elder one wants the
water to be luke warm, if it’s cold he just refuses to get in.
I have learnt a lot from my kids, they are such innocent souls just happy with
whatever I give them, no complains and fuss whatsoever.

3. I the mother of two special needs children and would like to share all those
feelings which I think are felt on giving birth to children with special needs. Those
feelings are full of sadness, negativity, and depression but as time passes and life
moves ahead they change into positivity, enthusiasm, love and care.
Ten years ago I was blessed with twin baby boys Hardik Bhatia and HarshitBhatia.
On the fourth day after their birth I was told by the doctors that they both were
visually impaired with only probably light perception. My first reaction was why
did it to happen to me??? I lost all hopes to live. As suggested by the doctors I took
initiative to do corneal transplant for both of them but it failed.
They had delayed milestones in other areas too like communication, motor,
cognitive etc.
But one day I decided, no I will not give up. After lot of hard work, providing
them with proper medical intervention, therapy, nutritious diet I could see the ray of

14
hope when they started to sit ,stand and then walk and that was the most happiest
moment of my life. I started dreaming and my dreams came true when they got
admission in a residential special school at Mumbai named Helen Keller Institute for
Deaf and Deafblind.
After attending school for three years they have achieved the goals which I
have never dreamt of. MyHardik and Harshit can follow requests can express
through basic signs and body language, they know who they are and are
independent in many of the daily living skills.
The way they both are blossoming with time. I am sure they will also have a quality
life in future with personal adequacy and social competency.
As a parent of two special needs children I think we should never lose hope .Our
positivity, trust and love for them will give them a secured and happy life.

4. Our son Adi was born on 17 Aug 2004. It was a normal delivery after an event free
pregnancy. When Adi was three months old, I noticed that he did not follow me
visually. This observation set in motion a series of events and as a three month old,
he was diagnosed with blindness in both eyes due to total Retinal Detachment in
both the eyes. The doctors suspected Retinoblastoma in both eyes,
Life moved on and for the next one and half years we went visiting every
doctor both mainstream and alternative with hope to improve Adi’s condition. We
also followed up on advice given by our well-wishers and visited every temple,
dargah and other places of worship, hoping for a miracle.
As time passed Adi missed his ‘speech’ milestone. We consulted many
doctors and they assured us that since he has a ‘normal’ hearing he will develop
speech and that it was just a matter of time.
When Adi was five years old we were posted at Pune on a Compassionate
Ground Posting. As Pune has a ‘Big’ Army Hospital, we decided to follow up on his
Medical tests. It was during one such medical Tests the doctor suggested that Adi
may have Intellectual Disability also and the lack of speech may be related to it. So
now Adi had three challenges, blindness in both eyes, Intellectual impairment and
lack of speech.
With passing time, lack of sight along with speech deficiency became a major

15
parenting challenge for us and a source of anxiety and worry. As Adi was now five
years old and the next concern was to send him to school. Pune has at least two
schools for Blind but both refused admission because developed speech was a
primary requirement.
One of the biggest parenting challenges was Adi’s erratic sleep pattern. Adi
had no fixed sleep pattern and as a result we only slept for about 3 to 4 hours in a 24
hour cycle whereas he was able to get his quota of sleep by waking up late.
Subsequently we got posted to Mumbai as a Special Case when Adi was 6
years old. Adi started going to Helen Keller Institute at Byculla two to four days a
week regularly. He used to undertake small tasks and it improved his overall
behavior and our understanding of his needs. The routine of going to school
brought some clarity and sense to his life and he enjoyed going to school.
Communication was still a barrier but he learnt Basic Sign Language which helped
him to communicate. We devised new signs in consultation with HKI to help Ad
communicate his basic needs and wants.
In 2014, when Adi was ten years old he started going to Vashi Centre, where
he was introduced to the concept of Daily Living Skills along with physical
activities like swimming, gym and participated in all activities like Sports Day,
Annual Day, picnics and birthdays and other events held in the HKI. Adi is now
happy and loves to go to school.
A few lessons learnt from our experiences:
1. A child should be admitted in school as early as possible.
2. Play is very important for any child and a child with Visual Impairment can
be taught to play even with simple household things.
3. There is a need to sensitize doctors and Special Educators to identify whether
a child has single or multiple disabilities. So that they can guide the
4. parents accordingly.
5. There should be simple questionnaires designed for the parents to identify
the disabilities in their child as the delay in early intervention is mainly due to
the confusion in identifying the disabilities in the child by both the parents
and medical professionals.

16
Our firm Beliefs-Parents Perspective
Our Children need
 Structure of life; coactive engagement; happiness and well-being; doing
"normal things"; appropriate support and services; and appropriate
communication,
 Disability is not Inability
We standby- Parents Perspective
Inclusion
Inclusion is a philosophy built on the belief that all people are equal and
should be respected and valued as an issue of basic human rights. It is not a
privilege for a select few.
For our children too

17
References:

Jerry G. Petroff, Ph.D. August 2001 National Transition Follow-Up Study of Youth

Identified as Deafblind: Parent Perspectives

Published by: The National Technical Assistance Consortium for Children and Young

Adults Who Are Deaf-Blind

Joffee,Editors,(1995),Hand In Hand:Essentials of Communication and Orientation and

Mobility For Your Students Who Are Deaf-Blind

Kathleen Mary Huebner,Jeanne Glidden Prickett,ThereseRafalowski Welch Elga

Miles, B.,&Riggio,M.(EDS.).(1999).Remarkable Conversation:

Peggy Freeman M.B.E,(1985),The Deaf/ Blind Baby-A programme of Care.

18
 CHAPTER - 3
PERCEPTIONS OF PROFESSIONALS (WORKING IN THE FIELD OF
DEAFBLINDNESS) ABOUT DEAFBLINDNESS
- Uttam Kumar & AtulJaiswal
Organizational Affiliation:
1. Uttam Kumar, Director of Programmes, Sense International India, India;
2. AtulJaiswal, Postdoctoral Fellow in Vision Science, University of Montreal,
Canada;
Contact details of corresponding author:
1. Mr. Uttam Kumar, Sense International India, Administrative Block,
AndhjanMandal Campus, Vastrapur, Ahmedabad, Gujarat - 380 015
Telephone: +91 79 2630 1282 Email: uttam@senseintindia.org
Key Words:perceptions, professionals, rehabilitation, education, deafblindness,
disability

Perceptions of Professionals (working in the field of Deafblindness) about

Deafblindness
Introduction
India, a lower-middle income country of 1.38 billion people, has tried to
adopt a progressive disability policy frameworkby enacting a rights-based
legislation “Rights of Persons with Disabilities Act, 2016” (Government of India,
2016). This statute is significant in the history of deaf blindness in India as it
recognized deaf blindness as a unique disabling condition under multiple
disabilities among the list of disabilities included in the legislation (Jaiswal, Kumar,
& Paul, 2018). To implement the Act in its full faith, strategic efforts are needed to
create awareness on disability rights, inclusion, and equal opportunity for people
with disability, including those with deaf blindness in India (Paul, Jaiswal, Kumar,
& Namdeo, 2020).

Of the 26.8 million persons with disabilities in India, there are approximately
21,44,000 persons with multiple disabilities (Census of India, 2011). Deafblindness is
one such unique multiple disability condition that requires specific rehabilitation
intervention due to complex nature (Sense International India, 2014).Once
19
considered as a low incidence condition (0.04% of the total population), it is
estimated that 5,00,000 individuals with deaf blindness live in India (Paul et al.,
2016; Sense International India, 2014). Though the 2018 global report on
deafblindness estimates between 0.2 to 2% of the world population to have this
condition (World Federation of Deaf blind, 2018). Using the lower prevalence
estimate of 0.2%, we might have more than 27,00,000 individuals with deafblindness
in India. The possible reasons behind this underestimation could be: first, there are
no epidemiological studies conducted in India to estimate the prevalence and
incidence of this condition; and second, limited awareness about deafblindness
among various stakeholders such as general public, policy makers, and
professionals that could influence identification of those with deaf blindness
(Jaiswal& Rizal, 2017; Paul et al., 2016; Sense International India, 2014).

Deafblindness is an umbrella term widely used to capture health condition of

varying degrees of combined hearing and vision impairment in the same individual
(Dammeyer, 2014; Wittich, Southall, Sikora, Watanabe, &Gagné,2013). Often, this
condition is widely referred to as ‘dual sensory impairment/loss’ by many agencies
across the world and there are more than 11 different terminologies used (Jaiswal,
Aldersey, Wittich, Mirza, & Finlayson, 2018).This condition could range from mild
loss in hearing and vision to total deafness and blindness (Dammeyer, 2015). Very
often, deaf blindness is associated with conditions such as physical, intellectual,
developmental and/or behavioral disorders that further impede their functioning
and participation (Sense International India, 2014). It can be congenital or acquired
in nature, and individuals with deafblindness vary with regards to the etiology, age
of onset, severity of loss, and presence of additional medical conditions (Ask Larsen
&Damen, 2014; Dammeyer, 2014; Jaiswal et al, 2018; Wittich et al., 2013)

Deafblindness is considered to be a complex disability, so it is to understand

this condition, professionals describe this condition differently depending on the
time they have spent in the sector and the amount of interaction they had with this
population. In India, there are also different terminologies being used such as
multiple disabilities, visual impairment with additional disabilities, multi-sensory

20
impairment, etc. Among all these descriptions and terminologies, professionals
agree almost unanimously that no two persons with deaf blindness are same. They
have different characteristics, different needs, different modes of expressing and
receptive communications, different learning styles and so on.

For many years, persons with deafblindness did not get much opportunities
to showcase their abilities and capabilities. In lack of much awareness, they had only
one name to be compared with, Helen Keller. It is fact that Helen Keller was person
with great abilities, not every persons with deaf blindness can reach to her level.
However, we have seen persons like Late. Dr.Rajendra Singh Sethi, who completed
his PhD despite his deaf blindness. There are many adolescents and young adults
with deaf blindness who have completed their educations till graduation and
masters. There are many young adults now bread-winners for their family and
leading happy life. Every individual has their share of strengths and weaknesses, so
does persons with deaf blindness.

In India, before Sense International India (SII) started its work in 1997, there
was only one organisation in Mumbai providing need based intervention to 23
persons with deafblindness (Sense International India, 2019). Not many
organisations knew about the condition, hence did not work towards developing
their capacity on this subject. One could literally count the names on the fingers of
the professionals, who were working with persons with deafblindness in the
country. Initial understanding on deafblindness in India was based on various
trainings, exposures and literatures available from USA, UK and the Netherlands.
SII started reaching out to various civil society organizations (CSOs) in the country
and created awareness on deafblindness and designed local material and various
training programmes for professionals in the country. These trainings were
instrumental in creating larger awareness on deaf blindness in the country and lead
to it’s recognition in the Rights of Persons with Disabilities Act, 2016. Currently, SII
has been providing comprehensive rehabilitation care and services to children and
adults with deaf blindness in the country through its network of 59 partners across
23 states(Sense International India, 2019). The work of SII is not only limited to

21
India, but has also expanded in South Asia - Bangladesh, Nepal, Malaysia and Sri
Lanka where SII played pivotal role in creating awareness on deafblindness and
mobilizing services for persons with deafblindness.

There has been a wide discrepancy in the perceptions of individuals with

disabilities and the professionals who work with them about the needs of those with
disabilities (Kersten, George, McLellan, Smith, &Mullee, 2000). Despite general
agreement and willingness among professionals to include people with disabilities
in mainstream settings, there arestructural and attitudinal barriers that pose
challenges in real practice (Pelleboer, Gunnink, Van Oorsouw, Van Weeghel, &
Embregts, 2017). It is found that the professionals’ attitudes towards disability and
their perceptions about the needs and experiences of those with disabilities have
direct relationship with care delivery and professional actions (Kersten, George,
McLellan, Smith, &Mullee, 2000). Given the influence of perceptions of professionals
on education and rehabilitation services, it is imperative to understand the
professionals ‘perceptions with regard to deafblindness in improving the
rehabilitation outcomes and experiences of individuals with deafblindness in India.

Methods
This study uses a cross-sectional descriptive research approach to explore the
perceptions of professionals working in the field of deaf blindness about deaf
blindness. Data were collected using an online survey with multidisciplinary
professionals working with individuals with deafblindness in India. The survey
included questions about their understanding of deafblindness, perception of
abilities, challenges faced by individuals with deaf blindness, idea of their
rehabilitation, challenges faced by them while supporting programmes for
individuals with deaf blindness, and requirement of training and capacity building
support in the country for optimal rehabilitation of individuals with deaf blindness.
The survey was circulated to 25practitioners and professionals who are involved as
mentors for partner organizations of Sense India or work in Sense India or its
partner organizations. A total of twenty-one professionals from across the country
completed the survey, of which twelve work in the programme team of Sense India.

22
Informed consent was obtained from all the participants who responded to the
survey. Permission was also obtained from participants to allow the authors to use
their names and professional affiliations while reporting the results.

The chapterilluminates the perspectives from professionals with varied

working experience in the field of deafblindness (ranging from 3 years to 35 years).
Data were analyzed inductively, and results are organized under five sections. The
first section highlights the understanding of deafblindness for professionals and the
second focus on their perception of abilities of individuals with deafblindness. The
third section underscores the challenges faced by individuals with deafblindness.
While fourth section discusses the project planning for education and rehabilitation
of individuals with deafblindness, required training and capacity building support
were outlined in the fifth section.

Results and Discussion

For this chapter, we consulted various professionals associated with work on
deafblindness. Many of them have spent considerable amount of time,
approximately 20 – 25 years and there are some who are relatively new. It is evident
from the responses of the participants that the perceptions of professionals about
deafblindness and its interventions have been shaped by their professional
background and years of work experience in the field of deafblindness.

I. Understanding Deafblindness
As per the Rights of Persons with Disability Act, 2016, deafblindness is
specified under Multiple Disability and the definition is as stated as- “Deafblindness
which means a condition in which a person may have combination of hearing and
visual impairments causing severe communication, developmental, and educational
problems”.
However, to have a better understanding in terms of planning and
identification of the various categories under deafblindness in the field, Sense
International India has further simplified the definition by explaining various
combinations within deafblindness.

23
  (i)Moderate to profound hearing loss and significant visual impairments;
The term includes any person with hearing loss of 41 dB and above, based
on results from clinical hearing assessment by a qualified professional. In
addition, the person should also have ‘Significant visual impairments’.
They are those, whose clinical vision assessment report confirms visual
acuity of 6/18 or poor or loss in field of vision.
 (ii)Moderate to profound hearing loss and significant visual impairments
with other disabilities; The condition is inclusive of term explained above,
with additional disabilities, like Cerebral Palsy, Intellectual Disabilities
(Mental Retardation), Autism, or any other sensory processing disorder.
 (iii)Central processing problems of vision and hearing; The term includes
any person with central processing problems of vision and hearing,
including cortical visual impairment, cortical deafness or any other
functional limitations caused due to involvement of central nervous
system.
 (iv)Progressive sensory impairments including hearing and visual
impairment; The term includes persons with significant visual impairment
or hearing impairment, whose sensory abilities are set to deteriorate due
to genetic or medical conditions. The person may have vision and/or
hearing abilities within the normal range at the time of identification.
 (v)Possible loss of auditory and visual processing disorder (associated
with severe physical or cognitive conditions) and severe communication
delay.

As discussed above, the professionals have described the condition with dual
sensory loss, i.e. of vision and hearing with varied degrees of loss. No person with
deafblindness are same, neither their abilities nor limitations. The impact of deaf
blindness also differs persons to persons depending on when and how they lost
their sensory abilities to see and hear. As described by Ms. VimalThawani from
Blind Peoples’ Association, Ahmedabad ‘Deafblindness is not deafness and
blindness. It is distinguished category where in a person has loss of vision and loss
of hearing, the combined loss of two sensory abilities has severe impact on

24
communication and learning in all areas of development.’ It is important to
understand that this combination is unique because of the multiplying effect of
combining loss of visual and hearing impairment. Ms. DiptiKarnad from Clarke
School for the Deaf, Chennai argues that ‘What we know about deafblindness is that
a person with this disability cannot benefit from the interventions meant for persons
with hearing impairment and those with vision impairment. He/she has unique
needs and has to be dealt with in a manner that is best suited for him or her. One
size does not fit all.’ Ms. Thawani further adds that their teaching learning needs are
different then persons having only visual impairment and hearing impairment.

Ms. AnuradhaBagchi from Helen Keller School for Deaf and Deafblind
describes the condition as ‘isolating’ disability. As we all know, the condition of
deafblindness impacts largely on the abilities to communicate, access information
and move independently, this results into isolation and loneliness. Ms. Sheela Sinha,
an expert in early intervention for children with sensory disabilities add that ‘it is
not just a combination of deafness and blindness rather a different class of disability
altogether with its own characteristics and needs. Moreover, often these children
display features which are characteristics of disabilities other than deafness and
blindness. The most striking and challenging characteristic of this group from the
point of view of education and training is, that each individual is unique and very
different from others in the group in terms of potentials and needs’.

Ms. SampadaShevde, from Perkins International India describes the condition

as ‘a dual sensory loss of vision and hearing which has a profound effect on
learning, especially in relation to communication, access to information and concept
development. The extent of the loss, impact and challenges will vary from
individual to individual.’ Mr. Sachin Rizal from Sense India emphasises that ‘every
individual with deafblindness is unique and no individual’s need matches with the
need of other person with deafblindness’. The intensity of sensory loss varies from
person to person. ‘It will range from low vision to total absence of sight. A person
may have field loss, distance vision difficulties, visual - perceptual difficulties or
absence of eye structure. Similarly with hearing, the range of hearing loss differs

25
with different sound intensity, from mild to profound’ as described by
Mr.Rashmikant Mishra from Sense India. This uniqueness depends on when, where
and how they became deafblind and the time intervention started. Many persons
with deafblindness may have additional disabilities/disabling conditions too, which
will cause severe impact on overall development of the person. In such
circumstances deafblindness becomes much more complex disability to deal with’ is
mentioned by Mr. P Srinivasan from Sense India.

Professionals face great difficulty in understanding the condition of

deafblindness when it comes to cortical involvements. There are conditions like
cortical visual impairment and cortical hearing impairment, which is complex to
asses due to inconsistent responses. The condition of functional deafblindness are
difficult to explain as clinical assessment reports are not conclusive and it is largely
supported by functional assessment of the condition. Persons with deafblindness
with these characteristics face challenges in getting disability certificate as well in
absence of inconclusive medical reports.

Abilities of individuals with deafblindness

It is also important to understand that strength or the weakness of any
individual is in relation to the environment they live in and the exposure they get.
Someone’s ability to perform eating skills either on dining table or sitting on floor
can be described as highly contextual. A person with deafblindness may have skill
to eat independently while sitting on dining table, but same person may not be able
to eat when same food is offered while sitting on floor or vice versa.

Mr. Akhil Paul, from Sense India describe the condition of deafblindness
where an individual has lots of potential, mostly unexplored which needs to be
unfolded layer by layer. An individualised approach to understand the condition is
the best method, and to plan needs based intervention. Role of professionals become
very important to work with families and persons with deafblindness to bring out
those abilities and skills a person with deafblindness has, which are ignored due to
prevailing conditions. Many persons with deafblindness do have great abilities but

26
it is in the hands of the parents and educators to recognize those abilities and create
opportunities to showcase their abilities. Abilities are exhibited and noticed only
when opportunities are given. Many persons/children with deafblindness are
hardly given any opportunity to experience and perform tasks.

Persons with deafblindness may take extra time to learn concepts and
perform the tasks in their own pace which should be recognized and encouraged by
others’ as narrated by Mr. P. Srinivasan, Sense India. ‘Among the limitations of
people with deafblindness, their abilities are far more than we expect. Many of them
have learned to compensate these limitations with fine tuning of the other sense’ as
says Ms.Priya from Mumbai. In lack of visual and hearing sensory abilities, they
learn to use the remaining senses to gather the information from the environment.
However, everyone is not so lucky, especially those with associated condition of
other disabilities. Early identification, intervention and exposure to the environment
is key to develop the strengths.

After years of initiating need based intervention for persons with

deafblindness, we have understood that these children and young adults can be
educated like any other learners, whether it comes to acquiring independence level
in performing Activities of Daily Living skills or literacy in formal and non-formal
settings or setting up income generation activities. Appropriate intervention at the
earliest helps maximise the potential of a person with deafblindness. The ability
needs to be harnessed by providing intensive and individualized services,
developing the crucial mode of communication thus negating to a large extent the
disadvantages that person with deafblindness faces, as says Ms. Nandita Saran from
National Association of the Blind (Delhi), who leads the services for persons with
deafblindness and is mother of young girl with multiple disabilities.

There are various examples today which showcase the abilities of persons
with deafblindness where they have successfully completed std. X and std. XII
examinations, and ended up in enrolling into universities. We have young girl with
deafblindness like Shrutilata Singh, who is qualified paediatric physiotherapist and

27
now leading advocacy work at Sense India. We have young adult with
deafblindness Ashin in Bengaluru, who is orphan and lives independently in a
residential set-up programme, and with the individualised training now able to
communicate fluently in Sign Language and forms perfect sentences in English. The
point is, Ashin is able to pick-up to two languages simultaneously, Sign Language
and English, which can be difficult for many persons with sight and hearing. There
are no dearth of example like Shrutilata and Ashin in our country who can become
role model for many persons with deafblindness, their families and professionals
associated with deafblind work.

‘If conducive environment is provided, children with deafblindness can be

educated even in mainstream schools, young adults can learn vocational skills and
be independent. Today many children are studying in mainstream schools with
guided support by the professionals, adequate curriculum adaptations and
evaluation methods’says Ms.Thawani. This also highlights the needs for curriculum
adaptations to help students with deafblindness cope with the stringent educational
system. Ms. Rosa Wahlang from Bethany Society, who works with students with
deafblindness in inclusive education setup says-‘with the right and appropriate
intervention and provision to maximum opportunity, each can be a contributing to
their family and hence society. Through visual and/ or tactile communication,
deafblind individuals can access language, engage in lifelong learning and build
relationships with others’. However, associated conditions or other disabilities pose
more challenges. Mr. Rajesh Varghese from Sense India narrates ‘each person with
deafblindness has diverse abilities. They can participate, give meaning to situations
depending on their intellectual abilities. They can learn to interact and communicate
with other people if proper training can be availed with the support of assistive
technologies which are accessible and adaptable.’

Professionals in the field emphasise on the needs of adaptations and

accessibility as two major areas to bring out abilities of persons with deafblindness.
Even if a person with given best of exposure, but the learning environment and
curriculum are not adapted as per their needs and materials used are not accessible,

28
the learning may become challenging and meaningless. ‘Persons with deafblindness
have the same abilities as sighted- hearing people and there is no doubt about it.
There are various example which can be sited here, everyone is aware of the story of
Helen Keller who had made a mark in this world as person with deafblindness. She
advocated for the rights for persons with deafblindness and she also wrote many
books, articles and quotes which is still remembered and referred by all. However,
the place where she reached was also because of the contribution of her parents and
her educator Anne Sullivan. Helen Keller received need based training and
education at a very early stage of life and she reached to certain heights. This also
proves that if a person with deafblindness is provided early intervention, given a
learning opportunity and educated at the right time then the learnings are much
higher in that person’as summarised by Sachin Rizal from Sense India. ‘With the
right intervention and support, there is no limit to what a child with deafblindness
can achieve and can do in terms of getting a degree, having a job, setting up a small
business and supporting the family and contributing to the overall society’ says
Ms.Shevde.

Challenges faced by individuals with deafblindness

‘Dual sensory impairment brings lot of challenges, but the real challenge is
the mind set and attitude of the community, which creates barriers. Available
support system can bring out the abilities of a person with deafblindness, making
them equally capable as anybody else’ says Mr.ParagNamdeo who has been
advocating for the rights of persons with deafblindness for over one and half
decade. When we think of deafblindness, the first thing professionals think about
the challenges they must be facing. The dual sensory loss poses lots of challenge to
persons with deafblindness in areas of communication, mobility, socialisation and
independent living.

With of the challenges in communication, isolation and disconnect from the

environment and people around, follows persons with deafblindness in every
situation. There are so many learning opportunity come to persons with sight and
hearing in natural way, which persons with deafblindness are deprived of. A person

29
when sitting at a place, collects lots of information about the environment through
vision and hearing, whereas, a person with deafblindness will not be able to get to
know much about the environment unless they reach or explore it through tactile
mode. A person with deafblindness with residual hearing and vision will have
better opportunity to know his or her environment, but due to limited abilities, they
also struggle to get holistic picture. As Mr Akhil Paul said that world of a deafblind
child extends as far as her fingertips reaches. Beyond that, nothing exists for her. A
person with residual hearing and vision will be able to collect some information, but
it may be broken or distorted. They may not be able to get complete picture as the
information reaching to them would be limited.

The primary challenge that all individuals with deaf blindness face is access
to information for learning and concept development, learning communication
strategies (which also includes interactions with other people), becoming aware of
and navigating their surroundings (both immediate and in the larger community),
depending on others for information; finding social, living and employment options
that fit their individual abilities, talents, needs, interests and aspirations.

Communication: Another challenge persons with deaf blindness faces is around

communication. How and what to communicate becomes so complex that not only
persons with deaf blindness, but people around them also struggle to get to the
context. This has been seen that every persons with deafblindness has got some
individualised mode of communication, which is specific to them. Most of the time
its gestures introduced by family members or primary care-takers becomes mode of
communication. It becomes difficult for other persons like professionals or
neighbours to understand the communication and respond to the need. This also
leads to lack of bonding between persons with deaf blindness and people around
them. With the difficulty in expressing their needs and thoughts, many a times
children also develops inappropriate or problem behaviours.

Mobility: Mobility is another challenge commonly faced by persons with

deafblindness. In absence of visual and hearing cue, they do not get enough

30
motivation to move around, whether crawling or walking. Many a times this has
been observed that if moving around by child brings negative thought due to some
injury or unpleasant experiences, they develop fear to move around in environment
and explore it. Hence, it is important to provide safe environment to persons with
deaf blindness to motivate them to move around.

Education: Persons with deafblindness are like any other child, who needs to be
trained and educated for the independent living. Unfortunately, we consider
education only when it comes to literacy, but education to communicate, education
to form relationship, education to manage own socio-emotional state especially
those with acquired deaf blindness, education to take care of one’s one need,
education to bath, dress and get ready, etc are not counted as education. There are
not many organisations identifying and addressing the individualised needs of
persons with deaf blindness. Due to this, they lose crucial year of their development
and acquiring skills awaiting specialised support. Another aspect of education is
literacy, which are mostly associated with school education. These children faces
extreme challenge in getting in schools and study along with their sighted and
hearing peers. Teachers also are not equipped to understand the needs and address
accordingly. Curriculum adaptation is an area where school education is not
prepared today to help students with deaf blindness.

Employment: After completing education, and vocational training programmes in

various skills, persons with deafblindness faces challenges with engaging in
meaningful employment. Till the year 2016, when Rights of Persons with Disabilities
Act did recognise deaf blindness, government policies were not very favourable
towards the needs of persons with deaf blindness. Even though,
SarvaShikshaAbhiyan (now SamagraShiksha) and ADIP scheme did talk about deaf
blindness, along with publications from The National Trust and Rehabilitation
Council of India, employment opportunity for persons with deafblindness was not
discussed. They were, in fact, never considered as productive members of their
society.

31
Availability of skilled professionals: In India, there is extreme scarcity of trained
personnel and professionals to address the needs of persons with deafblindness.
Currently only 2 training programmes on deaf blindness are recognised by
Rehabilitation Council of India, one at Diploma level and one at B.Ed level,
however, only few organisations are able to implement the training programme.
Other professional training programmes does not talk much about the dual sensory
loss condition and challenges associated with this. Deafblindness is alow incidence
condition, hence identification and their linkages with various programmes are
limited. The challenge becomes more extreme when it comes to rural areas. As
discussed above, persons with deafblindness face issues around communication,
interpreter support is a key to ensure their larger participation in society. We lack
the cadre of trained tactile sign-language interpreters in the country.

Policy support: Until December 2016, government policies did not actively speak
about the needs of persons with deafblindness. United Nation Convention on Rights
of Persons with Disabilities (UNCRPD) opened the door of policy level changes in
favour of deafblind population, as it specifically spoke about the needs of persons
with deafblindness in Section 24(3C). Government of India ratified the convention in
year 2008, and since then leading organisations like Sense International India upped
its advocacy effort to include deafblindness in the disability act of the county. The
National Trust Act included the condition of Multiple Disabilities in the year 1999,
and since then there has been ongoing advocacies for proper certification,
assessment, education and training.

Project planning for education and rehabilitation of individuals with deaf

blindness
Conceptualising, implementing and evaluating the projects for education and
rehabilitation of persons with deafblindnessis totally different from providing one to
one support to persons with deafblindness. The programme designing involves
various aspects of need assessment, budgeting, resource mapping in terms of
financial as well as availability of trained professionals. Professionals involved in
these work faces enormous challenges. Most of the time local NGOs do not know if

32
they will be able to identify the persons with deaf blindness in their region. With
lack of awareness on deaf blindness, these concerns seem genuine. Once the concept
of deafblindness is understood, the identification and referral becomes easier.

Reaching out to persons with deafblindness and addressing their needs are
more effective through multi-disciplinary team approach in which parents hold an
important role. Rehabilitation of persons with deafblindness becomes successful
when right kind of assessment and interventions are planned and executed
effectively. Also the professionals need to recognize the various challenges and
evolving abilities of persons with deafblindness. Successful rehabilitation of a
person with deafblindness may take extra time when compared with other persons
with single disability. Programme planners face challenges in terms of finding right
kind of infrastructure in place to implement an effective programme, and enough
financial resources to meet the requirements at the ground. We also lack the
intervention and technology in the field which are affordable and easily available.

At the community level, the programme managers have to deal with apathy
towards persons with deafblindness. This apathetic situation sometimes is persistent
within the family and requires immediate attention. There could be various reasons
behind this, one among them mostly seen is priority of families to survive. Rate of
poverty in our country is quite high. More than 70% of our population still earns less
than Rs. 100 a day, and in this situation, when a family gets a child with
deafblindness among them, the priority becomes survival of all, rather than
rehabilitation of this child. Project Managers need to account these society level
challenges and allocate resources to support families.

Education and economic level of family also becomes an important factor in

designing projects for persons with deafblindness. In situations where bother
mother and father are working either as daily wage workers or in offices,
intervention planning of children becomes challenging. In home based setup, if there
is no one available at home to work along with Special Educators, implementation of
educational planning may not be so effective.

33
 Implementing project on deafblindness is human resource intensive. Majority
portion of budget allocations goes towards salaries of appointed human resources.
Due to the complexity of deafblindness, 1:1 support is most effective which means
there is need for more Special Educators in a project. This results into higher input
cost in comparison to number of persons with deafblindness supported. The effect of
intervention or changes seen in children in result of intervention provided is very
slow among this population. This tests the patience of professionals, families as well
the donors, and everyone expects a miraculous change within the short span.

Deafblindness is a low incidence disability and population is scattered. The

project implementers face a dilemma on how far professionals need to travel to
reach a child to provide need based services. Or, how far a family need to travel to
access centre where specialised services are available. Lots of time are consumed
either by families or special educators in commuting. If this challenge is clubbed
with poor infrastructure like unavailability of regular public transport system, bad
roads, the challenges multiplies.

Capacity Building and Training

As discussed above, there are not many options of training and capacity
building on this subject available in India. The Rehabilitation Council of India
recognises a diploma level and a graduate level course on deafblindness, which are
implemented by very limited numbers of organisations. The senior professionals
working on the subject of deafblindness are largely trained by Sense International
India and Perkins International. There are very few publications on deafblindness
developed in the country, and are mostly available from western countries.

However, SII has made a great investment in developing more human

resources in the country and also publish information materials based on practical
experiences gained by working with persons with deafblindness and their families
over two decades within India. There are various skill upgrade workshops and

34
trainings organised every year. Recently, web based online training programme for
Special Educators and Families have been launched by the organisation.

Professionals in the country have suggested various measures to be taken to

develop human resources as well capacity building opportunities in the country:
 Enriching curriculums: There is need to include component on deafblindness
in every Rehabilitation Council of India recognised course. This also needs to
be included in curriculum of various therapeutic courses and medical
syllabus (MBBS / BHMS).
 The educational aspects of deafblindness need to be included in regular B.Ed
and M.Ed courses with a component on Universal Design of Learning.
Module should be developed and implemented for different levels of training
for generating awareness among community and government employees.
 All the parents of persons with deafblindness should be given opportunity
and support to undergo short term courses on deafblindness for greater
parent – professional partnership.
 All the staff of National Career Service Centre for Persons with Disabilities
should be sensitized on deafblindness with exposure visits to units for
children and young adults with deafblindness and capacity building training
should be given. They should have adapted vocational curriculum for
persons with deafblindness.
 Training on sign language (visual and tactile), interpretation and Braille;
along with training on using various technology and educational assistive
devices.
 Involving grass root level workers like ASHA and Anganwadi Workers,
along with teachers working under Samagra Shiksha
 There should be formal training in communication to optimize the use of
vision, hearing and technical aids, language perception and communication.
There should be a capacity building program for the special educators and
parents so that they can communicate and understand persons with
deafblindness.

35
  A national resource centre which would be a model centre in the country,
consisting of all the necessary need based training of individuals with
deafblindness along with professionals.
 Encouraging research on the issues which give us learning and lead to
universal programme to cater every individual with deafblindness.
Conclusion
With the inclusion of deafblindness in the ‘Rights of Persons with Disabilities
Act, 2016, a hope for a better future for the deafblind citizens of India was
envisaged. Successful rehabilitation of individual with deafblindness is best possible
with multi-pronged approach with rehabilitation care being delivered by an
interdisciplinary team of professionals from diverse disciplines. This chapter
concludes by highlighting the key gaps in the current practice and policy settings
and suggests possible capacity building initiatives to address those gaps. To bring
meaningful change in the lives of those with deafblindness, a collaborative nation-
wide intervention is imperative.
There is a need to have more trained professionals associated with this
miniscule population of persons with deafblindness and their families with large
impact on their abilities to live independently and with dignity. The involvement of
professionals will result into right kind of identification at the right time to bring
right kind of changes in lives of persons with deafblindness. There will be more
leaders among persons with deafblindness advocating for their rights and more role
models to look-upon. The capacity building opportunities within country will
motivate professionals to undertake more roles and responsibility benefitting lakhs
of population who remains unreached. This will also help in expanding the scope of
rehabilitation, from children and young adults to elderly population who leads a life
of rejection and isolation.
Acknowledgements
The authors are grateful to the professional network of Sense International
India, their programme team staff, and mentors/heads of organizations working for
the children and adults with deafblindness across the country. Professionals
responded to the questionnaires are Rosa Wahlang (Bethany Society, Shillong);
KrupaVelani; VimalThawani (Blind People's Association, Ahmedabad); DiptiKarnad

36
(Clarke School, Chennai) BrahadaVedachalam, SheelaSinha (Consultants);
AnuradhaBagchi, Priya-Ann Aranjo (Helen Keller Institute for Deaf and Deafblind,
Mumbai; Nandita Saran (National Association for the Blind, Delhi); SampadaShevde
(Perkins International India); Akhil Paul, Deepak Krishna Sharma, KalyaniJadav,
KanuPriya, Manali Shah, Manjinder Singh, Mercy Chingnunmuang, P. Srinivasan,
ParagNamdeo, Rajesh Varghese, Rashmikant Mishra, ReflinoFernandes, and Sachin
Rizal (Sense International India). The authors would like to extend their sincere
thanks to Akhil Paul for the final review and feedback.

37
References

Ask Larsen, F., &Damen S. (2014). Definitions of deafblindness and congenital

deafblindness. Research in Developmental Disabilities, 35(10), 2568-2576.
http://doi.org/10.1016/j.ridd.2014.05.029

Census of India (2011). Data on Disability. Office of the Registrar General & Census
Commissioner.NewDelhi.Availableonline http://www.disabilityaffairs.gov.in/upload/uploadfi
les/files/disabilityinindia2011data.pdf

Dammeyer, J. (2014). Deafblindness: A review of the literature. Scandinavian Journal of

Public Health, 42(7), 554–562. http://doi.org/10.1177/1403494814544399

Dammeyer, J. (2015). Deafblindness and dual sensory loss research: Current status and
future directions. World Journal of Otorhinolaryngology. 5(2): 37-40
http://dx.doi.org/10.5319/

Government of India (2016). The Rights of Persons with Disabilities Act, 2016.Government
of India (GoI).Gazette of India, 28 December. Available online
http://www.disabilityaffairs.gov.in/upload/uploadfiles/files/RPWD%20ACT%202016.pdf

Jaiswal, A.& Rizal, S. (2017). Partnerships in Early Intervention Services for Children with
Deafblindness in India. ICEVI Publication- The Educator, Vol-XXXI (2), 19-25. Available
online http://icevi.org/publications/educator/pdf/may_2017/The-Educator-2017-January-
Partnerships-in-Early-Intervention-Vol-XXXI-Issue-2.pdf

Jaiswal, A., Kumar, U., & Paul, A. (2018, January). Why Deafblindness Research is
Necessary in India. DbI Review, 47–51.

Jaiswal, A.,Aldersey, H., Wittich, W., Mirza. M., & Finlayson. M. (2018). Participation
experiences of people with deafblindness or dual sensory loss: A scoping review of global
deafblind literature. PLoS ONE 13(9): e0203772.
https://doi.org/10.1371/journal.pone.0203772

Kersten, P., George, S., McLellan, L., Smith, J., &Mullee, M. (2000). Disabled people and
professionals differ in their perceptions of rehabilitation needs. Journal of Public Health
Medicine, 22(3), 393ØC399. https://doi.org/10.1093/pubmed/22.3.393

Paul, A., Jaiswal, A., Kumar, U., &Namdeo, P. (2020). Role of Civil Society Organization in
the Inclusion of People with Deafblindness in South Asia: A Case Study on Sense
International India. In an Edited book, Building Sustainable Communities in South Asia: A
Civil Society Response. New Delhi: Palgrave MacMillan.

38
Paul, A., Mathew, B., Kumar, U., Rizal, S., &Jaiswal, A. (2016). Early Intervention (EI) for
children with deafblindness in India: barriers and enablers. Disability and International
Development, 1, 4-11. Available online
http://www.zbdw.de/projekt01/media/pdf/2016_1_BIE.pdf

Pelleboer, Gunnink, H., Van Oorsouw, W., Van Weeghel, J., &Embregts, P. (2017).
Mainstream health professionals’ stigmatising attitudes towards people with intellectual
disabilities: a systematic review. Journal of Intellectual Disability Research,61(5),
https://doi.org/10.1111/jir.12353

Sense International India. (2014). Handbook on Deafblindness. Ahmedabad, India. Retrieved

on January 07, 2017 from http://www.senseintindia.org/resources/publications/index/10

Sense International India. (2019). Annual Report. Ahmedabad. Available online

http://www.senseintindia.org/resources/annual-report

Wittich, W., Southall, K., Sikora, L., Watanabe, D. H., &Gagné, J. P. (2013). What’s in a
name: Dual sensory impairment or deafblindness?. British Journal of Visual
Impairment, 31(3), 198-207.

World Federation of the Deafblind. (2018). At Risk of Exclusion from CRPD and SDG’s
implementation: Inequality and Persons with Deafblindness. Retrieved from
http://www.wfdb.eu/wp-content/uploads/2019/04/WFDB-global-report-2018.pdf

39
 CHAPTER - 4
PERCEPTION OF SIBLINGS (OF INDIVIDUALS WITH DEAF BLINDNESS)
ABOUT DEAF BLINDNESS

-Dr.Jasmer Singh

Siblings attitudes on children with deafblindness

1.1.Introduction:

When a deafblind child is born, there is an emotional sometimes financial

impact on his his/her family. While may parents receive help in coming to terms
with various needs of this new family members they may have little time or energy
expend giving attention to their other children, the siblings of that disabled child.
As Featherstone(1980) explains, there can be an advantage to having a disability as it
guarantees that special attention will be given but perhaps it is appropriate to give
attention to the brothers and sisters of disabled children. Attitudes towards children
with deafblind are an important aspect of integrating them into regular classroom or
in other social activities. When children have positive attitude toward disabled
peers it can facilitate the inclusion of deafblind children. While a negative attitude
can hinder inclusion.

1.2.Siblings may develop multiple difficulties

Siblings of children with deafblindness are at a greater risk than average of

developing emotional issues, anxiety and stress. These problems are known as
internalizing issues, not obviously visible, and may be an attempt by these siblings
to hide their problems; They may want to be well-behaved or protect their already
overburdened parents. Other issues that these siblings may face are peer problems,
as a lack of engagement in extracurricular activities and academic issues as a result
of limited time and money.

1.3.Siblings become overly responsible and independent

Considering the attention given to the child with the deafblindness, siblings
may neglect their own issues. In some cases, siblings experience prettification where
they are expected to have many responsibilities for themselves and their siblings,
developing duties similar to those of a parent and overlooking their need to act like
40
children. This responsibility may seem positive to parents but may actually be
precursors to emotional distress.

1.4.Siblings May Feel Neglected By Parents

The family focus on the child with the deafblind may take away from the
attention desired by the sibling. Time spent on medical and therapy appointment
for the child with deafblind limits the amount of time parents can spend with the
other siblings, resulting in their feeling neglected. Furthermore, parents may spend a
great deal of emotional energy on the child with the deaf blind, leaving little
emotional energy to support the sibling.

1.5.Siblings feel in the dark from parents

Siblings may have similar questions about the siblings with the deafblindness
as do parents but have little information or resources available to them. During
doctors’ visits, they are often left in the waiting room. Parents may want keep
normal hearing sighted siblings away from the treatment environment or may want
the disability to be hidden. Leaving the normal hearing sighted sibling in the dark
about what is going on with their sibling. They may have many unanswered
questions about their sibling. Including whether their disability can be transmitted
and what will be in the future. With little or no information, siblings may develop
their own ideas about what is happening, often much worse than is actually true.

1.6.Siblings experience mixed emotions

Siblings may experience a range of emotions about their situation. They may
feel guilt, wondering if they caused the deaf blindness of their sibling, or they may
feel guilt about why the disability did not happen to them. They may feel fear about
the health of their sibling in the future.

Siblings may also experience resentment, anger, or jealousy towards their

sibling, considering the attention and resources expensed on their sibling.

An additional common feeling is embarrassment as a result of the behaviours

and appearance of their sibling. In some cases, the embarrassment may be so great
that they disassociate from the sibling with the deafblindness. They may claim to be

41
an only child or may not invite over friends so that they do not have to answer
questions about their sibling.

1.7.The situation provides opportunities for siblings

Siblings often develop certain positive characteristics such as self-control,

cooperation, empathy, tolerance, altruism, maturity and responsibility as a result of
dealing with their family situation. They may develop loyalty and a protective
attitude towards their sibling. In some cases, these siblings use someone’s attitude
about special needs as a test for screening friends and mates. The involvement with
their sibling may even lead them to choose future occupations in the helping
professions.

1.8.Sibling relationships:

Sibling relationships indicates that children can have ambivalent feelings

about their brother or sister (Dunn,1985: Furman &Bushmaster, 1985). In their study,
the initial interviews were conducted in an open ended format and they elicited
answers to questions such as Tell me as many good things as you can about your
relationships with sibling. From these interviews a list of relationship qualities was
derived. There are 4 factors to assess their perceptions of the presence of each of the
qualities in their relationships with their siblings.

1. Warmth/Closeness

2. Relative Status/Power

3. Conflict and

4. Rivalry.

They found that same sexed dyads more often reported feelings of warmth
and closeness than did opposite sexed dyads. And also found that the highest levels
of conflict were reported by siblings who were close in age. But when the siblings
were separated in age by a few years then the younger sibling did not resent the
relative status and power of the older sibling and in fact expected power differences
because of age differences. Conflict and rivalry were sometimes associated with

42
perceived parental partiality, children were reluctant to discuss this even though
they were willing to discuss other negative aspects of their relationship.

1.9.Sibling relationships when there is a deafblindness involved.

Some of the emotions were as above, for example rivalry and warmth, are
conflicting, and so it is to be expected that siblings of children with deafblindness
might also be confused by the emotions that they feel when asked to talk about their
sibling. Some of the emotions and characteristics mentioned in Powell and Ogle,
(1985), are, anger, guilt, acceptance of differences, fear of being teased, unselfishness,
jealousy, over involvement, understanding, embarrassment, pride, loss maturity,
worry and loneliness.

If siblings are to develop strong relationships with each other the developmental
stages and qualities children bring to a relationship at each stage must be
considered. Young children cannot negotiate, so sharing and turn taking between
siblings may not be a realistic goal.

Similarity, being able to interpret someone’s feelings is a mature skill and

should not be expected of pre-schoolers(Strain& Danko.1995). When young children
do not have the appropriate social and language skills to deal with conflict their
interactions will be directive (Newman,1994).

Siblings usually provide each other with the first peer relationship. In the case
of having a handicapped sibling this amount of time spent together may increase
due to caregiving expectations and because the deafblind sibling is unable to go out.

1.10. Understanding the disability:

To understand the role that a deaf blind sibling may play in family dynamics
it may be necessary to go back in the family’s history and to examine how the family
found out about their child’s disability and how they coped with the diagnosis in the
beginning. If a child is born deafblind or with syndrome the parents may know this
at birth, and they may or may not have known of the handicap prior to birth, if a
child is born with deafblindness, he has learning and other problems, the parents
will likely not know that until the child is about two or more years old. They may
have suspected something but have been thwarted in earlier attempts to have their
43
child diagnosed by well-meaning family members or family physicians who believe
that the child will grow out of it.

The vast majority of siblings express interest in participating in a sibling

group, participation should not be mandatory as some children who were placed in
a group by their parents actually reported less acceptance of their deafblind siblings.

While there is a suggestions that a support group can be viewed as an

alternative or substitute system of help when there is no other, the purpose of the
support group is to provide an opportunity for children to share common stories, to
learn a little about deaf blindness, to practice some problem solving skills and to
have fun. Siblings groups are not treatment groups.

The focus must be on a few achievable goals, they are:

To provide brothers and sisters of children with deafblindness an opportunity to

meet other siblings in a relaxed, recreational setting.

To provide brothers and sisters with opportunities to discuss common joys and
concerns with other siblings of deafblind.

To provide brothers and sisters with an opportunity to learn how others handle
situations commonly experienced by sibling of children with deafblindness and

To provide sibling with an opportunity to learn more about the implications of their
brothers and sisters special needs procedure.

1.11.1 Attitude scale

Scale of Attitude towards Deafblindness for the Deafblind Children's Siblings

Dear Participant

No doubt, that Deafblind children's siblings, and as a result of the presence of a

Deafblind child within the family create and form opinions toward Deafblind
generally and Deafblind in particular.
The following are expressions that express your opinion in some issues regarding
Deafblind, and this scale aims to investigate your opinion toward Deafblind.

Please read the expressions carefully and then response on the items on this scale by
checking the appropriate box that better express your opinion with (X) mark, and
44
 each box express the degree of your opinions. For example, if you have an opinion
that is expressed with the expression (strongly agree), the (X) mark will be in the
first box as follows:

No Item Strongly Agree Neutral Disagree Strongly

agree disagree

*If your opinion is expressed better by the expression agree, the ( X ) mark
will be in the second box.

*If your opinion is expressed better by the expression neutral, the ( X ) mark
will be in the third box.

*If your opinion is expressed better by the expression disagree, the ( X ) mark
will be in the fourth box.

*If your opinion is expressed better by the expression strongly disagree, the ( X
) mark will be in the last ( fifth ) box.

The expressions are not to be answer with yes or no , but instead they express
your opinion , so please do not leave any item without being answered .

Scale of Attitude toward Deafblindness

S.No Item Strongly Agree Neutral Disagree Strongly

agree disagree
I hate taking my Deafblind
1. brother/sisterinmytrips.
I don’t have fun spending the
2. time with my Deafblind
brother/sister
my brother/sister's Deafblind
3. makes me inclined to
convergence

45
 my brother/sister's Deafblind
4. makes me less focused for
success in my life
I feel no desire to meet the need
5. so far disabled brother
I hate Disability as it does not
6. teach me patience and tolerance
I hate some of my disabled
7. brother/sister's actions
I want my disabled
8. brother/sister to be in
an institution for special needs
persons
I feel that the education
9. of disabled brother/sister is
a waste of time
My disabled brother/sister
10. cannot be a useful citizen
I don't like to be seen with my
11. disabled brother/sister in front
of people
I see it is impossible for
12. my disabled brother/sister to
constitute a family in future
I do not like to participate on a
13. trip involving my disabled
brother/sister
I deal with my disabled
14. brother/sister as a nun normal
human being
I get angry when others make
15. fun or humiliate my disabled
brother/sister

46
 I hate to talk with my friends
16. about my brother/sister's
disability
I see that death is a comfort to
17. my disabled brother/sister
I feel com for or being away from
18. my disabled brother/sister
I feel that my disabled
19. brother/sister exhibits hatred
towards me
I do not feel happy talking to
20. my disabled brother/sister
I feel that my
21. brother/sister's disability
obstructs my happy life
I feel ashamed of the image of
22. my disabled brother/sister
I complain of the actions of my
23. disabled brother/sister
I hate watching a program
24.
about disabled
I get hurt because of my

25.
disabled brother/sister's
shameful behavior in front of
others.
My disabled brother/sister
26. causes lot of troubles and
always troubles.
It is difficult to work with my
27. disabled brother/sister because
he/she is irritable.
I feel ashamed when others talk
28. about my disabled
brother/sister.

47
 I feel that my disabled
29. brother/sister is introvert.
I continuously suffer from and
30.
feel depression.
I feel that my brother/sister's
31.
disability has

Affected there gularity of our

lives in the house.
I feel that the feelings of or
32. others is un natural toward my
disabled brother/sister.
I feel that having a disabled
33. brother/sister is a the at for the
future of family.
I feel unhappy when my father
makes me responsible for
34.
looking after my disabled
brother/sister
I feel sad for my disabled
35. brother/sister the failure to
perform hat he/she needs
alone.
I weep when I see the
continuous suffering of my
36.
disabled brother/sister through
his/her actions.
I fear that the presence of a
disabled brother/sister will
37.
create a difficulty for the other
siblings to get marry
I prefer to stay away from home
38. because of the presence of a
disabled brother/sister.

48
 I feel that the disability my
39. brother/sister makes me to stay
away from my friends.
I feel pain when others make
40. fun of my disabledbrother/sister

2. Perceptions of siblings about deaf blindness

2.1 DEAFBLIND SIBLINGS, RELATIONSHIPS:

Sisters & Brothers plays a critical role for each other in learning about feelings,
compromise for each other wellbeing, and the give and take of life (Bank & Kahn,
1982). This scenario is not the same, when one individual is affected with
deafblindness, their brothers/sisters may have difficulties interacting with them.
Auditory and visual impairments may limit children’s ability to engage in play and
domestic activities and to communicate effectively with their sisters and brothers.
Modifications in activities and augmentative forms of communication may be
required to be used for promoting effective interactions.

Several studies conducted on siblings aged at the level of preschool provides

insight on relationships amongst the typical siblings. These observational studies
found that more often the oldest siblings are the one who initiate activities, both
prosaically and aggressive, whereas the role of younger children is to observe and
imitate more. The oldest child tends to dominate the relationship and it continued as
they grew older. Sibling group at ages 4 years to 7 years and 8 years to 10 years were
found to interact in asymmetrical patterns such as teacher/learner with older
siblings dominating by giving advice, help or order and younger sibling reciprocate
and adjust accordingly. However, it is important to note that the examination on
typical children of older sibling relationships across Grades 3,6,9 and 12 it found that
progressively more egalitarian relationships across age groups. Thus relationships in
typical siblings appear to begin as asymmetrical and it tend to become less
asymmetrical with age.

Typical siblings engage themselves in a wide range of activities, roles and games
with some differences based on gender. The girls at the age of Elementary grades

49
are more interested to play indoor games and ritualized games, whereas boys are
more interested to play outdoor games especially in competitive physical activities.
As female siblings age, they are increasingly fascinated to play together andmale
siblings are less likely to play together as they age, more possibly due to the types of
games and activities they choose and interested. The nature of games played by girls
can accommodate players of differing levels of abilities whereas the boys,
accommodating players of differing levels of abilities in the games is increasingly
difficult.

The siblings of children with deafblindness tended toward more prosocial and
fewer agonistic behaviour patterns when compared to matched peers. The younger
siblings of children with deaf blindness assumed dominant leadership roles which
found to be contradicting as compared to typically developing siblings. They were
found to display significantly more nurturing and affectionate behaviours towards
their siblings with deaf blindness and to undertake caretaking and managing roles
as compared to their peers. The most occurrence of these roles were found when
sibling was an older sister. Similar results were found in studies of children with
deafblindness and their siblings, with the siblings being significantly more directive
and facilitative towards the target child.

The severity of deafblindness of the child and the physical and psychological
competencies of the sibling appear to play a vital role in sibling’s interactions. Stone
man et al. (1987) found that children with disabilities having less competencies in
language and adaptive skills their siblings play greater asymmetry roles. The
language skills and adaptive skills of children with deafblindness in their study also
positively predicted the amount of time the child spend playing with an older
sibling. The interaction between siblings tended to become less egalitarian when the
severity of deafblindness increased. They concluded that children with
deafblindness displayed far fewer directive behaviours than their normal controls
and were far less likely to either facilitate their sibling’s participation in the ongoing
activity or to attempt to control them in any way. The children with deaf blindness
were also less likely to be reciprocally involved in interactions with their siblings
meeting the changes occurs naturally with the growth of siblings, with tendency to

50
withdraw into solitary play or inactivity, with limited level of participation as the
severity deaf blindness increased.

Children who are deafblind have a concomitant loss of vision and hearing in
which the combination of impairments affects the individual more than either
condition would affect singularly. Individuals with deafblindness are unique from
each other as to the severity of hearing and vision loss in varying degrees hampers
their development according to their living environment. For example, individuals
may range from having a low vision to total absence of sight with combination of
mild hearing loss profound deafness. In many instances, individuals with deaf
blindness may also may also have additional physical, health and cognitive
impairments. The severity of deafblindness with additional impairments may be
very difficult for siblings to comprehend in their young age.

The effective interactions and meaningful conversations is possible with

Individuals who are deaf blind only when specific modifications based on the
unique requirements are effectively addressed. Individuals who are deaf blind often
require the use of various augmentative communication system to interact
effectively in their daily life. These communication systems system involves the use
of non-symbolic forms of communication such as idiosyncratic behaviours or
challenging behaviours with communicative intent, touch gestures, objects and
idiosyncratic systems. Other types of communication systems include symbolic
forms of communication such as communication board systems using tactile
symbols, graphic symbols, or pictures. Manual sign languages including finger
spelling and tactile sign language are another symbolic form that may be used by
individuals with deaf blindness having established language based communication.
It is important to note that, for effective communication, the partner and individual
with deaf-blindness both need to learn and use forms of communication that are
understandable to each other.

The sensory channels play a major role in effective interactions and

conversations. The individual with deaf blindness may use their residual visual or
hearing abilities during their interactions. These individual specific requirements
and modifications to be kept in practice during conversation by their siblings. These

51
visual and auditory modifications will enable the individual with deaf blindness to
effectively interact with siblings in games, leisure, or work activities for maximum
use of information presented by siblings for better participation. Some visual
modifications may include appropriate lighting on the sibling, colour contrast in
attire and materials used, effective usage of communication strategies within the
visual frame and auditory distance. Other communication modifications to assist
children with deafblindness to have effective conversation may include providing
information tactually or visually when residual functional vision is present, and
providing meaningful and appropriate language based auditory input when
residual hearing is present. Providing assistance when moving from one place to
another place can help individuals with deaf blindness to get to their desired
locations and to orient what is there around them in their immediate environment.

In an attempt to begin to determine the types of modifications that might be

functional to teach parents and siblings, a questionnaire was designed to first
examine parents and siblings perceptions of relationships between siblings and their
brothers and sisters with deafblindness. Specifically, we examined parental and
sibling’s perceptions of

(1).The types of interactions that occur between children with deafblindness and
their siblings.

(2). The amount of modifications/adaptations siblings uses to during interactions

(3). What are the challenges faced by siblings when communicating, playing or
engaging in activities, and

(4). Siblings’ attitudes towards schools inclusion and inclusion of the child with their
friends.

2.2 Perception of Siblings on Deaf blindness Preliminary Information

Name of the Deaf blind child /adult: S Satish

Age :21

Gender :Male

52
Name of sibling(Younger/elder) :S .SatyaVara Lakshmi

Age :23

Gender :Female

Educational Qualification :M.Com.

Occupational (If any) :Private job.

1. What do you know about Deaf blindness?

I Never have any idea about deafblindness until my brother joined UETS.I just
know as he is deaf and dumb. Later after he joined UETS, special educators have
come to visit us and give services to him and I also join many trainings afterward
so that’s how I know and learn more about deafblindness.

2. How do you feel having a Deafblind brother/sister?

We Have one elder sister and he is our only brother and youngest among
siblings. We were happy so happy when he was born as he is a boy but later
some years we find out that he is deaf and dumb, we feel so sad and worried
back then. Now we could accept him as just he is and after he joined UETS he
also find out that he has visual impairment. However we are happy to have a
brother who is so kind and loving.

3. If your Deaf blind sibling close to you? Yes/No. Why?

Yes we are close and happy to spend time together. Our whole family loves him
and is very close to him.
4. How do you involve your deafblind sibling in your family activities?
We give him work and involve him according to his ability and capacity. He
would fulfil all work allotted to him. He likes to involve and is happy to help us.
5. How much time do you spend with your sibling in a day?
When I was in college I didn’t have much time to spend with him. But now I
spend more time with him and share our things, playing together, drawings etc .
6. Describe your future plan for your deafblind sibling?
We expect him to do some training in his school in vocational skills. If he could
do some training and develop some livelihood skills I am always ready to
support him. We want him to be independent in future and take care of himself

53
 when we longer live with him.

7. How do you communicate with your deafblind sibling? Do you think it is

important to learn their mode of communication?

I use local sign and gestures but I need and feel the important to learn sign
language so I could communicate more with him and share more feelings and
emotions.
8. What is your opinion about the society view on deaf blindness or your
deafblind brother ? Are you happy or satisfied? Yes/No. Why?
Before many people in the neighbourhoods also many questions and raise
opinions about my deafblind brother. I used to be very angry and also feel shy
and sad because of that. Now people are becoming very aware and show care
and understanding towards him .I am happy to see such changes in the society.

9. Would you like to take out your deaf blind sibling outside with you? Yes/No.
Why?
People often seem very shocked to see my brother when we take him out. They
always talk about him and feel very strange. Now due to awareness and
sensitization in the community and also as my brother is now very well-
mannered since he joined school, nobody would talk badly of him anymore. I am
happy to see changes and like to take him out everywhere we go.

10. What is your views and opinion about your parents towards your deafblind
sibling?
When he was born my parents were very excited. then later when they found out
about his disability, they were so sad and for so many years they could not
accept him or our fate and were depressed and shy too. They always compare
our brother to other children .But now they accept him and were very happy
now as they could see more boys or man of his age were drinking or doing bad
things and bringing shame to the family. They feel that God has protected him
by giving this disability and they feel blessed now as he is very obedient and live
a good part.
2.3 Perception of Siblings on Deaf blindness Preliminary Information
Name of the Deafblind child /adult : V VChandramouli

54
Age : 23

Gender : Male

Name of sibling (Younger/elder) : V Ram Srinivas

Age : 22

Gender : Male

Educational Qualification : Diploma EEE.

Occupational (If any) : Gram volunteer

1. What do you know about Deaf blindness?

Deaf blindness is a combination of both vision and hearing loss

2. How do you feel having a Deafblind brother/sister?

I feel bad and sad sometimes however I also consider myself lucky to have a
brother who is very creative compare to other deaf blind children. I feel sad for
him sometimes too as he is not able to study in general schools or colleges
because of his disability.

3. If your Deaf blind sibling close to you? Yes/No. Why?

Yes, we are very close and would spend our free time together often. I also help
him in his daily activities and academics too. I often went to his school
accompanying him in all functions and events.
4. How do you involve your deaf blind sibling in your family activities?
He is not involving much in the family activities .We sometimes give him some
work according to his ability and he would do those only based on his interest
and wishes. He usually indulges himself in his own activities and loves painting.
5. How Much time do you spend with your sibling in a day?
Most of the time, whenever we have free time. He went to school and I also went
to college so we hardly have so much free time to play or spend together. We
usually play together in in the evening. Sometimes I wish he is able to see or hear
me.

55
6. Describe your future plan for your Deafblind sibling?
We have started a petty shop and we wish he could one day, manage that shop
by himself independently. Now I use to help him when my parents are busy. We
really wish he is independent and do this business very actively.

7. How do you communicate with your deafblind sibling? Do you think it is

important to learn their mode of communication?

We do not know sign language so we use local gestures and verbal. I don’t think
it is important to learn as long as we understand each other using our own way
of communication and gestures.
8. What is your view and opinion about the society on your deafblind sibling?
Are you happy on satisfied? Yes/No. Why?
Well they show mercy and sympathy to him. But they are not much aware about
the disability and challenges faced. I wish they know how much capable are deaf
lind people. My brother is a very talented who loves drawing, painting and very
good at it. He catches up things quickly.

9. Would you like to take out your Deaf blind to outside with you? Yes/No. Why?
I don’t mind taking him outside or to anywhere because we love and care for
each other. I really don’t mind his involvement in any outdoor events. He also
loves to go outside.

10. What is your views and opinion about your parents towards your deafblind
sibling?
They are feeling bad and sad for my brother. They wish that my brother could
learn and live independently. They show more care and concern towards him. I
happy the way they treat and take care of my brother.

2.4 Perception of Siblings about Deafblindness

1.Name of Child: Bharat Laxmandas Bhawani

Age: 17 years old

Vision: Blindness

Hearing: Normal Hearing Sensitivity

56
Speech: Echolalic and Delayed Speech

Associated Conditions: Intellectual Disability

School: Helen Keller Institute for Deaf and Deaf blind, Ghansoli

Group: Pre-vocational

Deafblindness is the condition of little or no useful of hearing and little or no

useful of sight. There are different degrees of vision loss and auditory loss within
each individual, thus making the deafblind community unique with many types of
deafblindness involved.

Weasparentsbelievedeafblindnessoranyotherdisabilityisnotadisabilityunlesswefe
elitso.We only need to give time to our child. They take a little more time compared
to a normal child. As a parent we should have patience and utmost faith on our
child.

Taking them to a special school is of prime importance. Because perfect guidance

can only help to achieve whatever we desire for our child.

Bharat is born in the year 2002 in the month of December. He is blind by birth
due to bilateral retinal detachment. Our father passed away in the year 2006. After
his death, our mother visited many schools for giving him right education. Mother
started his schooling as follows:

57
  In the year 2007 (for around 7 months) – SOBTI Centre by NAB, Thane.

 From 5th September 2007 till 4th February 2010 – Happy Home & School for
the Blind, World.
 From 2010 till 2011 – Mata Laxmi School by NAB, GTB Nagar.

But as per our personal experience, above schools were not imparting or
providing the perfect or proper training required for our child’s disability. As Bharat
grew up, we started facing serious problems. For example, in travelling, he used to
get hyper, angry, he used to pinch, bite etc.

In the year 2011, our mother visited Helen Keller Institute for Deaf and Deaf
blind, Ghansoli. He was 9 years old when he got admission in this school. He
studied in Early Education in initial years. While studying in early education we
noticed many changes in his behavior, Helen Keller provided us home visits to teach
us how to handle his routine activities. Bharat started understanding things and he
started responding to our approach towards him. In early education he was taught
many things like meaning of festivals, fruits, vegetables, objects. We are very
grateful to teacher so Helen Keller who have greatly contributed to his progress.

Presently he is in Pre-vocational class, where he is being taught sorting, cutting

vegetables, making paper bags, making necklace, pottery, packing, primate skill,
assembly work and many more things which are very helpful in sharpening his
finger grip, his skills and understanding his real capacity.

Simultaneously he is also doing gym (cycling, lifting heavy weights, treadmill

etc.) through which he is releasing his stress/energy exertion, which is of great
importance at this age. There is a great improvement in Bharat. He is learning many
things. His daily curriculum activities include:

 Cooking

 Swimming
 Gymnastics
 Class activities as mentioned above.

58
 His hands are his eyes. Now he himself tries to explore each and everything
through his fingers. He loves sound. He passionately listens to music. At present,
during lockdown we as his family trying to develop bond with Bharat to sit and
work during online sessions taken by his schoolteacher. We are taking various s
activities on a routine basis like:

 Separating Corn seeds

 Peeling Onions & Chopping them in machine
Grating Carrots
 Punching Papers
Separating Elaichiseeds
 Making Mala
 Assembly Activity (Pipes, rings, etc)
 Peeling Peanuts (Photographs are attached)
 Cycling at home
 Lifting bucket of water for washing clothes in a washing machine
 Packing packets of dhal

Though, being deafblind and intellectually disabled, we don’t look at Bharat as a

handicapped child. We are trying to treat him like a normal child, because we
believe in his capacity to do best in everything. Looking at a child as handicapped
will hinder his personal growth. Emotional attachment of our mother and we as his
sisters with Bharat is causing some behavior issues at present. We are working on
this together with his schoolteacher’s guidance. And we are sure we will get through
this together.

As his sister, I would to like to give a small message to all that, blessed with our
child, we should try to make this journey beautiful and impactful together involving
family, friends, school teacher rather than complaining about it throughout our life.
Yours Sincerely,

Arti and Neeta

Name of Child: SenjuAbraham

59
Age: 29 years old

Vision: Low Vision

Hearing: Bilateral Profound Hearing loss

Speech: No Speech

Associated Conditions: Intellectual disability

School: Helen Keller Institute for Deaf and Deaf blind, Ghansoli

Group: Vocational Training Unit

60
Hello.

My name is Joshu Abraham I am the younger brother of Senju Abraham. We are

three brothers, Senju is our elder brother and Sharon Abraham it the youngest
among us. We are very friendly to each other. Senju knows us very nicely he always
like to play with Sharon but for doing some serious things like cooking cutting
veggies he takes help of either me or my Mom, he is very disciplined about all his
work. If some work is given to him then he won’t get up until he complete it, he is
very hygienic about himself and others too there is no need for us to tell him to wash
hands before food or brush teeth before going to bed or after waking up.. The most
favourite thing for him is cooking food he always joins with mom for cooking food
he even likes to ride with me on my bike. He likes to do painting and make the
different models with clay. Now days he watches a lot of television, he likes to
watch funny videos and laughs watching it. He is very emotional too he misses his
teachers his hostel during this lockdown but anyhow teachers and us convinced him
and made him understand there is a virus out there and the importance of wearing
mask and washing hand.

2. Name of Child: Gouri Gawde

Age: 30 years Vision: Totally Blind

Hearing: Moderate hearing loss

Speech: No Speech

Associated Conditions: Intellectual disability

School: Helen Keller Institute for Deaf and Deaf blind

61
Group: Vocational Training Unit

Awareness about the fact that our sister Gauri is special child was never
shock since we grew together. Understanding of her disabilities was a gradual
process. Our communication with her is same as that of with any other normal
sibling. Only difference is we speak words and she reply with her unique sounds.
Our conversation is witty and funny some times and we all enjoy that. We do get
irritated and angry some times when she does not understand and do that, we ask
her to do specially when we are in hurry. She started going to school at very early
age of her. That times our mother used to take all her care. But as we started
growing, we shared responsibility of Gauri. We feed her, take her to school and also
participate in activities conducted for us by the school. During this period school
helped us a lot. School took care of vocational education of Gauri. They also
provided hostel facility to her. To A sall member so four family were not available at
home to tend to Gauri full time due to prior work commitments, hostel facility was
really beneficial to us and still itis.

We take utmost care of her hygiene same as that of ours whether it’s her daily
cleaning practice so even during her men strual cycles. During lockdown period she
was happy as all of us were around her all the time. When online learning sessions
started, Gauri was bit hesitant to do the task during session. But slowly she started
getting involved in to the activities. She enjoys doing some tasks and sometimes she
does not respond well to some activities. But we are happy that she is engaged in
fruitful activities during these daily sessions as part of her learning process.

3. Name of Child: Nikunj

Age: 13 years old

Vision: Low Vision

Hearing: Normal Hearing Sensitivity Uses sign language to communicate

Associated Conditions: Autism

School: Helen Keller Institute for Deaf and Deafblind

62
Khushi... Nikunj’s sister.

My view so n deaf and blind kids is that surely some part of them isn't
working or is not working as per then or mal people. But they are surely not less
than any other human being in this world. They are at par with others. They should
not be called disabled instead they should be called differently abled.
Coming to my brother Nikunj. He has quite short tempered he get angry very
easily so sometimes it gets difficult to handle him but we bond and gel too well. He
has the capacity to understand things and put them into actions. I often sit beside
him and tell him about things going around him so he gets familiar everything. In
this quarantine period I have seen improvement in him. He has started doing new
things by his own as if climbing up the stairs, etc

3. Teachers opinion on siblings attitude on children with deafblindness

Teachers of students with deafblindness possess unique expertise in
evaluation and instructional strategies associated with deafblindness. Certified
teachers of deafblind students are necessary as members of the IEP team for
students with deafblindness, a low-incidence population with unique, high-
intensity needs. Without appropriate input from trained personnel, students with
combined vision and hearing loss may have significantly limited access to
information, and to a free and appropriate educational program. The council for

63
exceptional children has defined beginning knowledge and skill requirements for
teachers of deafblindness, and these council exceptional children competencies are
incorporated into university personnel preparation programs. As the educational
needs of students with deafblindness vary widely, and there are rapid changes in
assistive technology and other program components, ongoing professional
development is essential.

Teachers of deafblindness many areas of expertise and how their special skills
are applied throughout the educational process.

3.1 Assessment:

During the IEP process, teachers of children with deafblindness collaborate with
other professionals by:

 Helping the educational team develop appropriate programming

recommendations
 Providing resources specific to children with deafblindness to support the use
of mobility techniques and devices.
 Recommending appropriate accommodations unique to deafblindness
 Explaining and analysing evaluation results as they relate to deafblindness
 Serving as part of a group of qualified professionals to determine if a child
meets federal and state eligibility for deafblindness.
 Providing information on the impact of ethology and sensory impairments on
learning
 Providing guidance in the use of appropriate evaluation tools for students
with deafblindness,
 Participating in functional behavioural assessment to help the term
understand the impact of deafblindness on behaviour, observing behaviours
to determine communicative intent in order to plan interventions.
 Evaluating the impact of the child’s combined vision and hearing loss on the
acquisition and use of their preferred mode of communication, language
development and communication skills.

64
  Guiding the team in using the interaction protocol to identify a student’s
communicative intent and initiatives, as well as supporting reciprocal
interactions.

3.2 Direct Instruction:

Teachers of children with deafblindness may provide direct instructions to

students at all ages and developmental levels. Services may be provided in the
home, at an early intervention program, or in the community.
Teachers of children with deafblindness must be able to educate, support,
and collaborate with the entire instructional team in areas unique to students with
deafblindness.

3.3.Teachers opinion on students with deafblindness

 Providing information on deafblind resources in development of transition
plans.
 Providing augmentatives and alternative communication system
individualized for those with deafblindness
 Recommendation instructional modifications to accommodate functional
vision and hearing and maximize use of other sensory system
 Helping individuals with deafblindness organize sensory information and
orient to space and objects across environments.
 Recommending adapted strategies for access to the general curriculum and
participation in the school community.
 Using strategies to regulate behaviour
 Using literacy instruction to foster acquisition of cognitive, social, and
linguistic skills
 Supporting the use of appropriate assistive technologies.
 Using effective interventions and management techniques for positioning
sensory management, movement balance, and hand use.

65
3.4.Supporting interveners
 Provide the team and administrators with information about the intervener
team model
 Help the team determine whether individual students with deafblindness
need an intervener
 Work with the to determine the appropriate role for an intervener with an
individual student.
 Model and promote use of deafblind strategies for the intervener to use with
the student.

Professional and administrative responsibilities

 Join professional organization that focus on deafblindness
 Stay current with resources from the National Centre of Deafblindness
 Maintain a resource library on Deafblindness
 Participate in local, regional, and state comprehensive planning activities for
system improvement with the educational services deafblind specialist.
 Participate in state and national efforts in product and resource development
 Obtain pre- service course work in deafblindness that is aligned.
 Participated in ongoing in-service to increase skills in the area of deaf
blindness
 Stay current on state and national efforts related to the intervener team model
 Maintain records on all evaluations, IEP and progress reports.
 Attend all the meetings
 Monitor and record students’ progress toward IEP goals and objectives,
noting effective instructional strategies and accommodations for individual
students.

3.5 Service delivery models

 Models for service delivery by teachers of children with deafblindness vary
and may include self-contained classrooms
 Creativity to meet student needs is necessary given the low incidence of this
population

66
  The teachers of children with deafblindness may concurrently serve as the
teacher of visually impaired and or the teacher of deaf or hard of hearing if
there is not a full caseload of students with deafblindness.
 The teacher of children with deafblindness role is an additional unique skill
set related to deafblindness
 If the teacher of deafblindness is certified as a teacher of visually impaired,
the teacher of deafblindness may contribute to or conduct the functional
vision evaluation.

These teachers would provide both direct and consultative services. Direct
instruction may include activities incorporating the following
 Vision awareness or vision efficiency activities
 Auditory awareness or training
 Activity routines which facilitate use of object symbols, tactile symbols,
spoken, signed or picture symbols.
 Tactile awareness training leading to tactile symbol or pre-braille activities
 Special awareness and exploration
 Literacy awareness
 Assistive technology devices.
 Consultative services include supporting and participating in planning with
the entire educational team, particularly the classroom teachers and
intervener.
 Assessment and evaluation of sensory and communication skills
 Creating, providing and supporting the use of materials appropriate for the
student sensory needs
 Information and support of communication system
 Developing meaningful educational activities.

67
References:

Council for Exceptional Children, "Initial Specialty Set: Blind and Visual Impairments"
(URL: http://community.cec.sped.org/dvi/professionalstandards/initialbvi).

Robbie Blaha et al., "Teachers of Students With DeafBlindness: Professionalizing the

Field", TX SenseAbilities3, no. 2 (Spring 2009): 16-20. (URL:
https://www.tsbvi.edu/outreach/2662-teachers-of-students-with-deafblindness-
professionalizing-the-field)

Visual Impairment and Deafblind Education Quarterly

—a. Chris Montgomery, "Teacher of the Deafblind Pilot Program in Texas: Part I",
VIDBE Quarterly, 59, no. 5: 34-40. (HTML Flipbook: http://dvi.uberflip.com/i/422067-
vidbe-quarterly-volume-59-5)

—b. Chris Montgomery, "Teacher of the Deafblind Pilot Program in Texas: Part II",
VIDBE Quarterly, 60, no. 1 (Winter 2015): 15-32. (HTML
Flipbook:http://dvi.uberflip.com/i/466408-vidbe-quarterly-volume-60-1)

—c. Marina McCormick, "Creating Change: Transforming Instruction for Students

with Deafblindness", VIDBE Quarterly, 61, no. 3: 45-58. (HTML Flipbook:
http://dvi.uberflip.com/i/710454-vidbeq-61-3-su-2016/45)

Abramovitch, R., Corter, C., &Lando, B. (1979). Sibling interaction in the home. Child
Development, 50, 997-1003. Abramovitch, R., Corter, C., &Pepler, D. J. (1980).

Observations of mixed sex sibling dyads. Child Development, 51, 1268-1271.

Abramovitch, R., Corter, C., Pepler, D. J., & Stanhope, L. (1986). Sibling and peer
interaction: A final follow-up and comparison. Child Development, 57, 217-229.

Bank, S. P., & Kahn, M. D. (1982). The sibling bond. New York: Basic Books. Brody, G.
H., Stoneman, Z., & MacKinnon, E. E. (1982). Role asymmetries among school-aged
children, their younger siblings, and their friends.

Child Development, 53, 1364-1370. Brody, G. H., Stoneman, Z., MacKinnon, C. E., &
MacKinnon, R. (1985). Role relationships and behavior between preschool-aged and
school-aged sibling pairs.
68
Developmental Psychology, 21(1), 124-129. Buhrmester, D., & Furman, W. (1990).
Perceptions of sibling relationships during middle childhood and adolescence. Child
Development, 61, 1387-1398

Independence without sight or sound. New York: AFB. SPSS base 7.0 for windows:
User's guide. (1996).

Chicago: Author. Stoneman, Z., Brody, G. H., Davis, C. H., &Crapps, J. M. (1987).
Mentally retarded children and their older same-sex siblings: Naturalistic in-home
observations.

American Journal of Mental Retardation, 92, 290-298. Stoneman, Z., Brody, G. H.,
Davis, C. H., &Crapps, J. M. (1989). Role relations between children who are mentally
retarded and their older siblings:

Observations in three inhome contexts. Research in Developmental Disabilities, 10, 61-

76. Stoneman, Z., Brody, G. H., & MacKinnon, C

. (1984). Naturalistic observations of children's activities while playing with their

siblings and friends. Child Development, 55, 617-

Furnham, A., & Gibbs, M. (1984). School children’s attitudes towards the handicapped.
Journal of Adolescence, 7, 99–117. Male, D. B. (2011). The impact of a professional
development programme on teachers’ attitudes towards inclusion. Support for Learning,
26, 182–186. Nikolaraizi, M., & De Reybekiel, N. (2001). A comparative study of
children’s attitudes towards deaf children, children in wheelchairs and blind children in
Greece and in the UK. European Journal of Special Needs Education, 16, 167–182.
Nikolaraizi, M., &Makri, M. (2004). Deaf and hearing individuals’ beliefs about the
capabilities of deaf people. American Annals of the Deaf, 149, 404–414. Rosenbaum, P.
L., Armstrong, R. W., & King, S. M. (1986). Children’s attitudes toward disabled peers:
A self-report measure. Journal of Pediatric Psychology, 11, 517–530. Rosenbaum, P. L.,
Armstrong, R. W., & King, S. M. (1988). Determinants of children’s attitudes toward
disability: A review of evidence. Children’s Health Care, 17, 32–39. Rosenberg, M.
(1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press.
Rosenberg, M. (1989). Society and the adolescent self-image (Rev. ed.). Middletown,
Conn. Wesleyan University Press. Schmitt, D.

69
P., &Allik, J. (2005). Simultaneous administration of the Rosenberg Self-Esteem Scale in
53 nations: Exploring the universal and culture-specific features of global selfesteem.
Journal of Personality and Social Psychology, 89, 623–642. Scior, K. (2011). Public
awareness,

attitudes and beliefs regarding intellectual disability: A systematic review. Research in

Developmental Disabilities, 32, 2164–2182. Scior, K., Kan, K. Y., McLoughlin, A., &
Sheridan, J.

(2010). Public attitudes toward people with intellectual disabilities: A cross-cultural

study. Intellectual and Developmental Disabilities, 48, 278–289. Siperstein, G. N., Bak,
J. J., &Gotlieb, J.

(1977). Effects of group discussion on children’s attitudes toward handicapped peers.

Journal of Educational Research, 70, 131–134. Triandis, H. C.

(1971). Attitude and attitude change. New York: Wiley. Vignes, C., Coley, N.,
Grandjean, H., Godeau, E., & Arnaud, C. (2008).

Measuring children’s attitudes towards peers with disabilities: A review of instruments.

Developmental Medicine and Child Neurology, 50, 182–189.

Vignes, C., Godeau, E., Sentenac, M., Coley, N., Navarro, F., Grandjean, H., et al.
(2009). Determinants of students’ attitudes towards peers with disabilities.

Developmental Medicine and Child Neurology, 51, 473–479. Weiss, M. F. (1994).

Children’s attitudes toward the mentally Ill: An eight-year longitudinal follow-up.
Psychological Reports, 74, 51–56. WHO.

(2007). International classification of functioning, disability and health, children and

youth version: ICF-CY. Geneva: World Health Organization

70
 CHAPTER - 5
PERCEPTION OF DEAFBLINDNESS

-DiptiKarnad

An individual with deafblindness has a combined loss of vision and hearing.

Neither the deafblind individual’s vision nor hearing can be used as a primary
source of accessing information. A person who has EITHER a sight OR a hearing
impairment will use the unaffected sense to compensate for the loss of the other. But
a person who is deaf blind has inadequate sight or hearing to do this, and for this
reason, deaf blindness should be considered as a separate and unique disability,
with different effects and implications.

Perception is the way we interpret information gained through the senses.

When the two major senses of vision and hearing are impaired perception in the
deafblind is affected. Their perception of the world is different when both their
auditory and visual sensory inputs are blocked. Therefore, they need to use their
other senses such as touch, smell, taste, and body awareness (Sense, 2015).

The effects of deaf blindness are varied with different challenges depending on the
degree and onset of the two disabilities. Deafblind individual’s perception and
experiences are based on their residual auditory and visual senses, touch and other
sensory experiences. Severely or profoundly deaf blind learners’ perceptions “only
extend as far as their fingertips,” says Riggio as they process information primarily
through touch.

DEAFBLINDNESS SEVERELY AFFECTS

 Access to information
 Communication
 Orientation and mobility
 Learning(concept development)
 Emotional development
 Social development
 Cognitive development

71
What is it to be a child with deaf blindness:

The senses of vision and hearing are often referred to as the “distance senses”
– that is, they connect a child with the world that extends beyond his or her personal
body space. Sighted and hearing children learn language and important concepts
naturally when surrounded by language with ready access to safe and interesting
environments that encourage exploration.

The senses of vision and hearing help the child organize information from the
environment. The young child who is deafblind, however, does not have access to
opportunities for this “incidental learning” and the information the child does
obtain from contact with people and the environment is often fragmented or
distorted.

A sighted and hearing infant anticipates daily routines. A sighted hearing

child can anticipate daily routines using hearing and vision and be prepared for the
activities that follow. The infant who is deaf-blind misses these cues because of
limited vision or hearing and may find the world unpredictable and confusing--
possibly even scary. This child needs others to help make sense of the world. The
child may already be communicating in different ways but the parent or caregiver
needs to understand the cues and respond appropriately.

Development and use of communication is vital to gain information that

affects perception. Communication is the greatest challenge among the deafblind to
access information, understand and to be understood. Face-to-face interaction with
others is difficult due to limitations in hearing and vision and lead to a vulnerable
situation. Isolation and social exclusion are a common consequence, as are
restrictions in terms of activity and increased risk of physical harm (Möller, 2008).

Deafblind individuals need to use assistive devices for communication and

mobility. Hersh (2013) reports stigmatization in relation to the use of mobility and
communication aids. As a result actual experiences or fears of being stigmatized by
72
using assistive devices may lead some deaf blind people not using them even
though they may benefit from these devices. Quality of life of the deafblind may be
reduced as they generally are them more dependent on other people for personal
assistance which is not always available (Hersh, 2013).

What a child with deafblindness would perceive and say:

“I am isolated because I cannot listen to or read the sign language of a person who is
speaking or signing to me from a distance. I need to be in close proximity or in direct
physical contact with the other person.”
“I communicate in a number of ways like vocalization, gestures and depend on a
number of cues to receive communication”.
“I need individual instruction and either touch or close proximity is required to
make contact more meaningful”
“I rely on interpreters to have the distant world interpreted to me”.
“I have limited number and variety of experiences and my world does not exist
beyond my fingertips.”
“Since I cannot see or hear, my social experiences are limited. Sometimes I appear to
be awkward or rude because I have not had the chance to participate in the
exchange of facial expressions and gestures which are very important aspects of
social interaction”.
“For me an object does not exist if I am not touching it: in other words object
permanence is late in developing, due to this my ability to name and categorize
objects which is tied to language development is delayed.”
“Moving around the in the world are ways in which one comes to know about the
world, develop curiosity and learn about how objects and people are related one
another. This is another problem that I have.”

Perceptions of what it is to be an adult with deafblindness:

*name changed
ADITHYA* :I am a person with Congenital Rubella Syndrome. I was diagnosed as
having profound sensori neural hearing loss and congenital cataracts which were
operated upon at birth. As a little child I was sent to an Early Intervention Centre for

73
children with hearing impairment but as I could not benefit from an oral
communication system, I was admitted into a unit specially meant for children with
deaf blindness. Initially I had a problem keeping my hearing aids on but as I began
to hear sounds and was introduced to sign language, I began to cope with my dual
sensory impairment. I was introduced to pictures and words, functional academics,
and began to learn quickly. I completed my VIII standard and at this time I realized
that my vision was deteriorating. Entering into adolescence and at the same time
having vision issues made me defiant, angry and depressed. However, my teachers
supported me by introducing me to Braille, use of the cane and best of all tactile sign
language. Initially I was not able to adjust to the change but soon the world opened
up for me. What I perceived when I had vision I could remember. The world of
communication has helped me to maintain friendships, Braille helped me to read
and write and acquire information, and knowledge of computer helped me to keep
busy. The biggest joy in my life was when I was introduced to the Good Vibes on
my Smartphone through which I can communicate using the Morse Code. My
biggest achievement has been clearing the Secondary Class Examination of the
National Institute of Open Schooling with good credits. My perception of the world
is that technology has helped me to communicate with the world. My teachers and
parents marvel at my expertise in sign language and Braille. I now teach tactile Sign
language to a little girl with deafblindness, Braille to a young man with deaf
blindness and some degree of cognitive abilities. I have a lot of sighted hearing
friends who have learnt to communicate with me. I am independent in moving
around using my can and I love to travel especially to meet my relatives. I love life
and realize that if a person with deaf blindness can communicate, he/she will never
be isolated.”

SHAKILA*: My name is Shakila and I am the eldest of three siblings. I am a young

woman with Congenital Rubella Syndrome who spent the first three years of her life
in and out of hospitals for eye and heart surgeries. I joined a unit for children with
Deafblindness at the age of four. Initially I was shy and withdrawn and loved to
move in circles but at school, my teachers realized that I had something to say but
did not know how to say it. They bombarded me with sign language and within six

74
months what people labelled as stereotypic behaviours disappeared. I began to learn
to read and write as well as participate in activities like art and craft. The field trips
from school taught me a lot about the world around me. My parents took me to
family gatherings and included me in their conversations. After the birth of my
sister and brother, I had someone to share my thoughts. My teachers and parents
realized that I had the inherent talent of drawing and painting which helped me to
communicate when I did not have words for my thoughts. At one time I even
wanted to be an astronaut since I was so enamoured by what I saw in the
Planetarium. My communication and language improved and I had the privilege of
giving a presentation in National Deafblind Conferences and at Dubai before an
audience of Non Resident Indians. Being greatly interested in art and craft, I began
to do quilling which I learnt from a volunteer at school and now I am able to make
and sell my quilling jewellery. My proudest moment was when I completed my
Secondary Class from National Institute of Open Schooling with good marks. My
perception of the world is that one has to be able to communicate with the world
around and keep abreast of the happenings by being literate.”

SOWMYA*: I am 17 years old and I have deafblindness due to hearing impairment

and optic nerve atrophy. When I was admitted in a special unit for children with
deafblindness, my teacher noticed that along with profound hearing loss I was also
losing my vision. I was admitted in the Tamil Medium and was introduced to sign
language and functional academics.

Five years ago I switched to English medium and since then have made steady
progress. Thanks to the farsightedness of my earlier teacher who introduced me to
Braille, now I am adept in contractions and abbreviations in English Braille. I was
trained in Orientation and Mobility since I began to slowly lose my vision. As for
communication, I had to change from visual sign language to tactile sign language.
Earlier I found it very difficult but now with my friend Adithya’s help I have
mastered it. My family is very loving and they include me in all activities. The best
part of my life is that soon I will register for National Institute for Open Schooling
Secondary Course.

75
SIVARAMAN*: I am thirty five years old. I have Usher Syndrome. I have profound
hearing loss since birth and began to lose my vision when I was fifteen years old.
Adolescence and vision loss came together and this proved to be a disastrous period
in my life. I had to cope with my studies as well as change my mode of
communication from oral to sign language. Mobility became a problem too and in
low light I found it difficult to move without assistance. At this time, my parents,
especially my mother became a source of continuous support.

I completed Higher Secondary as well as graduation with good credits. I joined a

prestigious National Institute where I completed my Diploma in Special Education
in Deafblindness and became the first teacher with Deaf blindness for the persons
with Deafblindness. Subsequently I completed my Special B.Ed. in Hearing
Impairment and now I am employed as a Special Educator for the children with
deafblindness in my Alma Mater.

As a person with deaf blindness I have some issues. When I go shopping, I am

unable to find the things I want and the shopkeeper cannot help me because he does
not understand my communication. Travelling becomes tedious and time
consuming as I have to depend on local transport .I would love to travel alone
around the world but this seems a difficult proposition though I know there are a
few deaf blind people who can travel. I aspired to get a bank job but did not
succeed. I want to live independently but find that there is no security. I wish there
was a cure for visual impairment. I look forward to seeing better.

MATHEW*:I was born with a severe visual impairment and a few years back lost
my hearing, making me a person with acquired deafblindness. I often perceive that
in this world very few people try to put themselves in our place and think what it is
like to experience our challenges and imagine how life can be possible with dual
sensory impairment.
Man is unique in the sense that he can construct his environment. Language and
communication help him to exchange his needs, thoughts, and beliefs and so on. The

76
greatest difficulty in excelling in this area of life for those with multiple sensory
impairments is with the acceptance and appreciation of our significant others. Our
immediate family, other relations, community, education, work place and society at
large has a great impact on our lives. The lack of interest to learn sign language by
parents, reactions and even professionals working for rehabilitation and social
welfare make things so hard for us to acquire information and fulfil important
needs. I am highly qualified but due to deafblindness, my wish to become a lecturer
is not fulfilled. I am not provided with an opportunity to get a job according to my
qualification. This can be taken as a good example of traditional orthodox
behaviour. Psychologists who often lay great emphasis on motivation fail to
recognize challenges of deaf blindness and fail to provide us job opportunities even
when we have the eligibility for that profession the preference being for a normal
hearing sighted person.

Therefore it is clear that there arises a need for a better commitment by all sections of
the society, a strong political will that can prove very useful in creating an effective
means. Through the joint cooperation of parents, teachers other professionals and
the deaf blind adults themselves can provide valuable solutions to matters affecting
their lives especially with stress on communication and sign language. They should
also be able to develop sound policies to protect their interests that can lead them to
a better quality of life.

Conclusion:
Understanding how people with deafblindness think and perceive is important
because it has an impact on how lifestyle options and service provision could be
designed to optimize their lives. Perceptions create an opportunity to ‘include’
deafblind people in society as desired by them. Service provision should depend on
practical implications based on feedback from people with deaf blindness which can
make the provision more sensitive and effective.

77
References:

Gleason, D. (2017) Early interactions with children who are deafblind. National Center on
Deafblindness).Retrieved from https://www.nationaldb.org/info-center/early-interactions-
factsheet/

Hersh M. A. (2013). Deafblind people, stigma and the use of communication and mobility
assistive devices. Technology and Disability, 25(4), 245–261. [Google Scholar]

Miles, B. (2008).Overview on Deafblindness.DB-LINK, The National Information

Clearinghouse on Children who are Deaf-Blind, Helen Keller National Centre, Monmouth,
OR, USA.Retrieved fromhttps://www.nationaldb.org/info-center/overview-factsheet/

Möller K. (2008). Impact on participation and service for persons with

deafblindness(Unpublished Doctoral dissertation).Örebrouniversitet, Örebro: Retrieved
from http://oru.diva-portal.org/smash/get/diva2:135788/FULLTEXT02.pdf [Google Scholar]

Riggio, M. in Zachary, J. (2019). She is up for the challenged. Boston College

News.Retrieved from https://www.bc.edu/bc-web/bcnews/campus-
community/alumni/marianne-riggio.html

78
 Publications of NIEPMD

Title Cost
1. Resilience Headway Youth with Intellectual Disability: A Manual………….Rs.400/-
2. Resilience Headway Siblings of Children with Special Needs:A Manual……Rs.400/-
3. Resilience Headway Youth with Multiple Disabilities: A Manual……………Rs.400/-
4. Acceptance &Coping : Families of Persons with Multiple Disabilities.............Rs 300/-
5. Empowering Caregiving Staff: Disability Care…………………………….….Rs 300/-
6. Capacity Building of NGOs in Disability Management……………………….Rs 400/-
7. High Support : Parental Needs………………………………………………....Rs 300/-
8. Parental Wellbeing in Raising a child with Special Needs…………………….Rs 400/-
9. Kinesthetic and Vestibular Activities for Developmental Disabilities………...Rs.300/-
10. Specific Learning Disabilities: An Introduction……………………………….Rs.500/-

79
 Individual With Deaf Blindness: Perception Analysis

About this book

Perception analysis of individuals with deafblindness is an attempt to
understand their unique world. The attempt of exploring their unique world
includes perceptions of individuals with deafblindness about the environment,
people and experiences; perceptions of parents about their child with deafblindness
on their experiences of rearing the child; The siblings of individuals with
deafblindness were also interacted to understand their perceptions about their
brother or sister with deafblindness; Perceptions of professionals working with
population of deafblindness were also collected and analysed. The attempt is limited
to the data collected hence the information may be explored for making assumptions
for further study. This book shall be useful for those with intent to develop basic
understanding about deafblindness and their perceptions for creating effective
environment for people with deafblindness. The contributors of this book were
selected based on their vast experience in the field of deafblindness in India.

Chapter Contributors
Shri, D.Stalin Arul Regan, Special Educator, NIEPMD, Chennai.
Smt.AnuradhaBagchi, Director of Education, Helen killer Institute of
Deaf and Deafblind, Mumbai.
Shri.Uttam Kumar, Director of Programmes, Sense International India, Ahmedabad
Shri.AtulJaiswal, Postdoctoral Fellow in Vision Science, University of Montreal,
Canada;
Dr.Jasmer Singh, Asst. Professor. NIEPVD, Dehradun.
Smt.DiptiKarnad, Principal Clarke School for the Deaf and Mentally Retarded
Chennai

Contact Us
East Coast Road, Muttukadu, Kovalam Post, Chennai - 603112, Tamil Nadu, India.
Ph: 044- 27472113, 27472046
Email: niepmd@gmail.com

Cost of this book:Rs.350/-

80