5 Very bad bedside manner

Medical professionals and hate speech

Sheri Wells-Jensen and Claire Wells-Jensen

Introduction
Experience is important. Context is important. Environment is important. No
utterance is made in isolation. Where, to whom, how, why, and when we say
things matters as much as, or more than, the words spoken. Each time I speak,
everything within and around me influences the words I choose, how I string
them together, what I leave out and what I emphasize, all filtered through my very
particular understanding of the world around me. Then that message passes out
of my controlled space and into the arcane territory that is another person’s very
particular understanding of the world around her, and I can only hope that she
received the message I intended to send. Sociolinguists, philosophers, and activ-
ists like Hymes (1962), Austin (1975), Grice (1975), and Elgin (2009) have spent
their professional lives struggling to describe the myriad shifting and interlocking
factors that weave through and around everything we say, shaping how it will be
received.
Such analysis is complicated under the best of circumstances, and when exam-
ining hate speech, defined by Parekh (2012) as speech that “affects an individual’s
dignity, reputation or status in society,” the circumstances are decidedly not the
best. The topic is important, and a false analysis could do real damage. We have
to be wakeful and strategic, seeking first to do no damage. The hope is, of course,
that accurate work can help us understand hate speech and uncover ways in which
we can work toward eliminating it.
In the ideal world, blind and visually impaired people should be able to count
on ophthalmologists as allies, but this is rarely the case. This chapter highlights
the disabling environment that blind people encounter when visiting an eye doc-
tor. Next, the chapter will highlight the disablist attitudes displayed by health care
professionals in such environments. It will also discuss the effects of such atti-
tudes in terms of psycho-emotional disablism (see other chapters in this volume).
Finally, the chapter will suggest that while disablist language about blindness
might not officially or legally be recognized as hate speech, its message  – that
it is better to be dead than blind  –  is effectively the same. In this way, disab-
list language needs to be recognized as a previously unrecognized form of hate
speech, since it wounds and invalidates its victims. The fact that the speakers (and
 Very bad bedside manner  103
sometimes the blind listeners themselves) often do not perceive what is said as
“hateful” makes this a particularly interesting, and insidious, scenario.

Establishing the context

Imagine I (Sheri) am in the hallway of an office building. The door before me,
which opens inward, bears a small plastic rectangle with a braille room number on
it; I find it (after some searching) affixed to the centre of the door itself. Pausing
there to locate and read the number means that I will be in the way of anyone
wishing to enter or leave that room, so I try to be quick. There is a larger plastic
rectangle above the room number which most likely indicates the name of the
office’s current inhabitant, but its surface is featureless: there are not even raised
print letters for me to trace with my fingers. I rely on the number alone as evidence
that I have reached the right place. It’s probably right, but I would have appreci-
ated the extra information on that other sign.
I open the door and step in. As I’ve been given no information about the layout
of the room now before me, I pause in the doorway to listen. There is a TV across
the room diagonally to my left. Sometimes, TVs play propaganda for the “ben-
efit” of the people waiting in the outer office, but this one has its volume dulled
to unintelligibility, so it’s useful as a landmark, but not as a source of information
about which office I’m in. I can hear that there is a wall to my right, so altogether
I imagine that I have a handle on the rough size and shape of the room, but I don’t
yet know where the reception desk is. I make a hypothesis that it’s on the wall
I’m facing, somewhere to the right of the TV perhaps. I step in, allowing the door
to fall closed behind me, and make my way across the room, weaving through an
assortment of chairs, some of which contain people whose feet I touch with my
cane as I go. If there is a clear path from the door to the desk, I’m clearly not on
it. But I cross the room with a few murmured apologies and locate the desk by
listening for the sound of typing. The receptionists (I think maybe there is more
than one; it is an awful lot of typing) say nothing as I pause there; I am not certain
if they are busy, or if I am in the wrong place, or if perhaps they are turned away
from me and cannot see me.
Eventually, someone from behind the desk says: “Can I help you?” and I give
my name and the reason I’m there, relieved to learn at last (based on their lack of
surprise) that I am in the right place. I am handed a sheaf of printed forms, which
I cannot read, and a discussion begins about how I will fill these out. This problem
has apparently never occurred to them before. A second receptionist joins the first,
and we determine eventually that I can go over this information orally with some-
body later on. I don’t know who this person will be, if he or she will be accurate
(or able to spell), and I’m not sure if we will have any privacy while my informa-
tion is discussed, but I feel pressured to let all this go. The process will clearly be
an inconvenience for them.
After this, despite the inexpertly given directions, I find a place to sit. Although
I hear the pages of magazines turning around me, there is nothing for me to read
while I wait. I spend some time paying attention to the people coming and going
104  Sheri Wells-Jensen and Claire Wells-Jensen
around me and locate the door to the inner office on the wall to the left of the desk,
right beside the TV where I thought it probably had to be. This takes about two
minutes. After that, I go back to listening to other people turn pages and wishing
I’d brought my own supply of reading material. Finally, my name is called, and
I get up and walk to the door. When I get there, the receptionist has no idea what
to do to get me through the door and on into the inner sanctum: Should she lead
me by the hand? Walk backwards in front of me? Get behind and push me? I give
her the 30-second tutorial on how to guide a blind person, and she takes tiny nerv-
ous steps down the hall with me holding her elbow, unnecessarily narrating each
slight turn as we pass along the hallway.
We pass through a doorway, and I wait to find out if this is another reception
area, a room with a table and chair, or something else. There is an uneasy pause.
She’s thinking something over. “Right in front of you,” she begins, and then spins
around, puts an arm around my waist and another on my shoulder, more or less in
waltz position, and pulls me forward. She hasn’t said so, but she’s trying to get me
to sit down in a chair. I extract myself from her grasp, rearrange my clothing, and
sit down. “Oh, good job,” she says, and she pulls my cane from my hand, wonder-
ing aloud where she should put it. I get up, reclaim it from her, stow it behind the
chair and sit back down. There’s another pause, and then I hear her tennis-shoed
feet carry her away from me, back out into the hallway. I’d wager, at this point,
that we are both equally exhausted.
This, for me, is a description of a fairly typical visit to an ophthalmologist – a
specialist in diseases of the eye.
Medical offices in general, and ophthalmologists’ offices in particular, are
notoriously bad at accessibility. This is perhaps to be expected. As medical
personnel whose personal and professional goals are to search for cures for
all kinds of blindness, they default to a medical model of disability (Davis,
2017; Fisher & Goodley, 2007). I am a totally blind adult who does not have, or
seek, any prospect of vision-restoring treatment; I am a conundrum at best, and
evidence of failure at worst. They aren’t quite sure what to do for or with me
and treat my simple request for antibiotic drops as somewhat odd. My consist-
ent experience with ophthalmologists’ offices has been that the environment is
never welcoming.
By way of illustration, in my decades of frequenting these offices, I have never
found any of the following:

•• Names of the ophthalmologists in braille or raised letters on the outer office

door;
•• Any attempt (before I arrive or after I enter) to orient me to the layout of the
office;
•• A staff member comfortable guiding blind people – or capable of giving clear
verbal directions;
•• Anything for me to read in the waiting room;
•• Braille pamphlets about blindness from consumer organizations;
•• Any kind of adaptive technology beyond eyewear which is for sale;
 Very bad bedside manner  105
•• An established method via which blind people can fill out their own paper-
work independently;
•• Accessible information about medications;
•• Braille business cards;
•• Any means of writing notes (such as dates of future appointments) in braille
for patients – or even a plan for emailing that information;
•• Braille signage within the office itself;
•• Accessible tactile models of the human eye;
•• A blind employee of any kind at any level.

There is no indication in the physical or interpersonal environment of the office

to suggest that blind people are expected to show up or are in any way welcome.
If we do show up, perhaps in a panic-stricken search for a miracle cure or some
kind of despondent final visit, it is clearly expected that some sighted person will
be completely in charge. The professional goal for ophthalmologists is to prevent
or reverse loss of eyesight. Taking this mandate seriously, and aware of the fact
that they have to engage in some degree of marketing to attract and retain patients,
they eliminate any evidence of the possibility of blindness from their physical
environment. Blindness is the enemy to be eradicated, and the environment com-
municates that this has been well and thoroughly done.
Although this may comfort sighted patients with minor eye problems and
encourage those who are worried about losing their vision, the cumulative effect
on patients who are already blind is palpable. This is of course not “speech” in a
strict or legal sense; rather, it is the disablist nonverbal background of the speaker
and perhaps the listener as well  –  and precisely because it is background, its
impact is difficult to attend to.
It might be natural to expect that professionals who deal regularly with mat-
ters pertaining to vision would be inclined to put small accommodations in place.
The fact that this is not done is significant. What the patient infers from this low-
level disablist message will vary, but it will not go unnoticed. The professional,
on the other hand, has clearly established that he need not make any effort to
change his usual routine. This is his territory; he is fully in charge and comfort-
able. Nothing else need be done, and because the superficial circumstances are
unremarkable – even perhaps elegant – it is difficult to find fault. The professional
is fulfilling his role just as is expected, and the patient, it is assumed, should do
the same. If there is a patina of privilege coating the otherwise sanitized surfaces
in the office, it goes unmentioned.

What is said
There are, of course, eye care professionals who are steadfastly courteous. But
as medical personnel, they are strongly drawn toward a medical model of dis-
ability. The “disease” (in this case blindness) is the principal problem, and their
calling is to seek the “cure.” (Consult Davis, 2017 and Fisher & Goodley, 2007
for further discussion of the medical model and its more humane alternatives).
106  Sheri Wells-Jensen and Claire Wells-Jensen
In  this context, where blindness is profoundly undesirable  –  representing, as it
does, professional and perhaps personal failure – it is not unusual to find impas-
sioned discourse. Patients must be saved from the enemy, and the enemy is blind-
ness. To fail to do this is tragic, perhaps even shameful. Doctors would insist
that their first priority is to do no harm. However, it is difficult to read the fol-
lowing quotation from Dr. Henry Marsh, a noted British neurosurgeon, without
recoiling: “Leaving somebody completely blind after surgery (it has happened to
me twice) is a peculiarly unpleasant experience. It feels worse than leaving them
dead” (Marsh, 2017, p. 242).
First, there is his peculiarly self-absorbed perspective, in which the blind-
ness somehow has happened to him primarily, rather than to his patients. Then
comes the centrepiece: the very clear statement that blindness feels worse than
death, that complete surrender to the disease is such an unbearable and tragic loss
that even if the patient could be saved, perhaps she should not be. He makes no
attempt to soften that statement, and there is no way it can be misunderstood. It is
not the arrogance, the ignorance, or even the extreme eugenic overtone that makes
this hate speech. It is the unquestioned and unquestionable social authority of the
speaker, lending force to his words in the minds of blind and sighted readers alike.
He is the authority on this topic. If the neurosurgeon has said it, then it must be
true – because he, after all, is an expert; he knows all about the eye and the brain
and about what can go wrong. His colleagues, his staff, his neighbours, people
in general and (perhaps most cruelly) his patients accept his words as truth. It is
better to be dead than blind. Such comments reflect a broader attitude that dis-
ability disqualifies people from participation and recognition in society and that if
disability was eliminated altogether, the world would be a better place (Garland-
Thomson, 2012).

Hate speech and medical charities

Another contingent deeply invested in the destruction of blindness are the assort-
ment of charities which have “curing blindness” as their philanthropic target.
These agencies have two inextricably intertwined goals which affect the way they
communicate: to cure blindness. That is not to say that the search for medical
progress is anything but admirable, and there is obviously nothing wrong with
campaigns to prevent or reverse blindness in and of themselves. People can and
should get regular eye exams, just as they can and should get vaccinations, go to
the dentist, and wash their hands before eating, and there are campaigns advocat-
ing for these things which do a great deal of good.
Unfortunately, however, the goals of raising money and either finding a cure
or performing individual surgeries to counteract eye diseases are sometimes more
important than accurate, respectful representations of the abilities of real blind
people.
Their depictions of blindness and blind people assume that the blind per-
son receives no training in any adaptive blindness skills and is unable to invent
even the simplest solutions for herself. Furthermore, although social support and
 Very bad bedside manner  107
educational systems for blind people in developing nations are much less sub-
stantial than those in wealthier nations, it is still inaccurate to state that blindness,
rather than poverty, is to blame. In this context, the stereotypical helpless and
(crucially) profoundly grateful blind adult or child is welcome, but the independ-
ent, active, joyful blind person cannot be. Regardless of how many years have
passed since the onset of blindness, the blind person in this world of discourse
remains frozen in time, eternally defeated and frightened, without the agency or
impulse to work through even the simplest problems.
The sighted audience is invited to “imagine how it feels,” or in some scenar-
ios (such as the ill-conceived “How Eye See It” campaign from the Foundation
Fighting Blindness) to actually dare to put on a blindfold themselves for as much
as two or three minutes while attempting some familiar task, and to reflect after-
ward on “what it’s like to be blind.” (For a discussion of the differences between
the incompetence of sighted people wearing blindfolds versus the abilities of a
blind person with skills and experience, consult Silverman (2015). For a video in
reaction to the “How Eye See It” campaign, go to https://youtu.be/jQid1NzFsvk
(Wells-Jensen, 2016).
The “imagine how it feels” approach offers two related possibilities. One is to
exploit the audience’s fear of blindness by emphasizing themes of helplessness,
isolation, and loss:

•• “… as his sight declined… his daughter began to spend most of her time
watching over him.”
•• “It’s not unusual for him to trip or fall.”
•• “As his vision grew worse [he] no longer spent time with other children.”
•• “[She was] just sitting at home unable to work or even play with her
grandchildren.”
•• “[He was] doomed to a life of darkness.”

These are straightforward messages of disdain for blind people and their abilities.
They function as hate speech, as they insult blind people and state that we are use-
less, unloved, and pathetic. And, once again, these messages are powerful because
they are accompanied by the high social status associated with medical personnel
and philanthropists.
Another approach is to emphasize the joy and relief that comes with the cure,
which seems at first glance to be a more “positive” message. However, the under-
lying assumptions are equally hostile, and in fact are more insidious.
Elgin (2009), building on the philosophical and linguistic work of writers like
Austin (1975) and Hymes (1962) demonstrates how verbal attacks can be back-
grounded within utterances, making them more difficult to address directly. For
example, a professional might say that “Children who have their sight restored…
can play with friends, succeed in school, and pursue their dreams.” The unstated
assertion in the background is that blind children cannot play with friends, will
fail at school, and cannot pursue dreams. This is the background to the utter-
ance  –  presumed to be shared by both participants in a conversation, without
108  Sheri Wells-Jensen and Claire Wells-Jensen
being stated explicitly. For a blind individual to object to such a statement and to
simply assert that they can succeed in these areas leaves the wider negative mes-
sage unchallenged – one that disparages and devalues all blind people. (Consult
Tannen, 2007 and Elgin, 2009 for further discussion of metamessages and the
effect of this kind of verbal violence.)
Once this type of rhetorical pattern has been pointed out, it is easy to find
analogous examples of similar “hidden” verbal attacks:

•• Message: “Those who have their sight restored are given an average of
50 years of sight, allowing them to learn, play, and build bright futures.”
Underlying assumption: Blind adults cannot learn, cannot play, and have no
future.
•• Message: The dream of restoring sight is “offering hope to millions of
Americans.” Underlying assumption: To be blind is to have no hope.
•• Message: “They can recognize their families again.” Underlying assumption:
Without sight, it is (bizarrely) impossible to identify even your own family
members. (The blind can’t recognize voices?)
•• Message: “They can now enjoy some of life’s simple joys like reading.”
Underlying assumption: The joyless blind people cannot read.
•• Message: “They finally get their lives back.” Underlying assumption: Blind
people don’t have lives. (Again, perhaps we are better off dead.)

The cumulative effects of disabling environments, verbal aggression, and eugenic

messages about disabled lives being worthless are incredibly destructive. Psycho-
emotional disablism takes a toll, as reflected in the following statement “I thought
about taking my own life; I was useless to myself; I was useless to others. I stayed
at home. I cried.”

Conclusion
There are certainly direct acts of hate speech against blind people – many worse
than the example provided by Dr. Marsh. Even the word “blind” itself is com-
monly used to mean “ignorant” or “clueless.” However, the more frequent forms
of hate speech issue thick and fast from “well-meaning” professionals who derive
their livelihood from their “battle” with blindness. Despite the fact that linguistic
analysis clearly reveals the verbal attack within the utterance, this kind of rhetoric
is normalized and the intent praised as philanthropic. My instinct that I, Sheri,
have been attacked is dismissed. I am perceived as oversensitive and misinformed.
This is a particularly insidious form of gaslighting. Strong, capable, loving,
productive blind adults are told that we are submissive, isolated, miserable crea-
tures who can contribute little or nothing to society. We are only shadows of who
we could be, and we need able-bodied people to rescue us and solve our problems.
When we understand this and when we are able to identify hate  –  no mat-
ter how it is disguised – we can deal with it directly. We can name it. We can
point it out. We can explain how it functions. We can work with both medical
 Very bad bedside manner  109
professionals and charitable organizations so they stop attacking the people they
are meant to serve. And maybe, if we can do all these things, we will draw a little
closer to eliminating it.

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