I’ll Be Deaf When Gucci Make
Hearing Aids:
A Brief Introduction to Subjective
and Objective Disability
Simon Hayhoe
I can define my problem thus:
I am 36 years old. Tinnitus runs in
my mother’s family. My mother has it; my uncles and aunts on her side have it;
my grandmother had it for as long as I could remember. When I was in my
mid-twenties, I began to notice my hearing deteriorating. Because this problem
was in my family, my doctors monitored my progress. Early tests revealed that
this problem wasn’t so great. I resisted further hearing tests until my
mid-thirties, when it became too much of a problem to ignore. I had a further
hearing test, and discovered I had lost enough high frequencies to be
registered hearing impaired. I now have to wear this ugly National Health
Service protuberance from my ear, until I earn millions and can afford one of
those swanky Danish ones that sit in your ear (virtually) invisibly.
So, am I disabled?
Of course not.
Well not now, anyway. I guess you could have made a case for me being slightly
disabled between my mid-twenties and the time the hearing therapist shoved that
really bloody painful plug of plastic in my ear, and asked me whether it was
comfortable or not. After that moment my problem was more manageable. Despite
the pain, his was the clearest voice I had heard for ages. Then when he plugged
the chord into his computer to adjust its settings and rang a small bell, it
felt like Quasimodo was ringing the colluses of Notre
Dame. It was completely the opposite problem to the one I had before. Before
this time, I really had difficulties, though. I had to rely solely on staring
at my family, students and friends, hoping to see their voices as accurately as
possible.
The answer to my problem then is, I have never felt disabled although I once was slightly. I
grew up in a community where I was treated as an able-bodied person. I managed
to handle what was felt to be my disability secretly, something to be
controlled. In fact, I now overcompensate for it. Like a closet gay man who
desperately beds women to preserve his manhood, I have become super normal. I
wear Paul Smith jeans, Burberry socks, and dress for work with Austin Reed
suits and Hawes & Curtis shirts; I buy Gucci sunglasses; I take degree upon
degree; my health, blood pressure, heart rate and waistline always have to be
in excellent form; I write, paint and photograph as if my life depends on it. I
am trying to escape the life and the disability I have seen in my family. It
was something they fought and hated, and it is something I feel I have to too.
So who does feel disabled, and how
do we take account of whether a person wants to define themselves as disabled
or not when they enter a museum or school?
Working with disabilities in schools, I have found that there is a
simple method for considering this problem. I regard disability as a
description of how a person is excluded from behaving in a comfortable or normal fashion by their society. This is
dependent on the era and environment in which they reside (Hayhoe (1995, 2000). Disability can be visible or invisible. It can also depend
on individual’s circumstances, such as their social class or occupation.
Medically, disability is not an illness. It most often is, however, the outcome
of an illness. Socially, it is regarded as impairment to the functioning of
culturally defined tasks. In this essay, it is this last aspect that is of
particular importance.
The social conceptualisation of
disability has two further perspectives. Firstly, disability can be defined by
the individual given particular circumstances: what an individual can do in
those circumstances. This is Subjective Disability. It is so called, because it
examines each person’s trait according to its context and subject: the
environment, the task, the man, the woman, the girl or the boy. For instance, I
have no hearing impairment whilst reading a book, but I have a walking
impairment when I am carrying heavy shopping bags. Although in a social
context, this conception of disability is related to the consequences of its
medical causes, such as whether a subject can still make money, present themselves in a way that is felt to be acceptable, or
perform other social tasks as expected by their greater society. For instance,
subjectively a person is never blind when they are on the telephone only when
they are presented visual information.
Secondly, disability can be what a
society tells a person they can or cannot do in particular circumstances. This
is Objective Disability. It is so called
because it classifies a group of people with similar traits as an object, a
group. It is then thought of as an identity, and symbols such as hearing aids
and white sticks are designed to help its common subjective disabilities. This
way of examining disability is more closely related to social constrictions and
classifications. It is particularly apparent in the sudden change from a
disabled identity to a non-disabled identity (Gregory (1974), Sacks (1993)) or
able bodied to disabled. The most extreme illustration of this latter change of
identity is given by Merleau-Ponty (2002: P.88) in his description of the
phantom limb. In this instance, patients who have had a limb amputated still
consciously believe it is still present. In this way, the new objectively
disabled human has a denial of his new condition.
“[The] imaginary limb is often found to retain the position in which the
real arm was at the moment of injury: a man wounded in battle can feel in his
phantom arm the shell splinters that lacerated his real one… An emotional
circumstance which recalls those in which the wound
was received, creates a phantom limb in subjects who had none. It happens that
the imaginary arm is enormous after the operation, but that it subsequently
shrinks and is absorbed into the stump as the patient consents to accept his
mutilation.”
There are 9 conditions that need to
be fulfilled for a man to be considered Objectively Disabled (Hayhoe (2004, 2004a)):
2.
His association of himself to
other people with similar traits. Such associations can be a person having to
admit to themselves that they are blind, or come to
terms with their loss of a limb or movement.
6.
The rarity of his trait compared
with other disabling traits of a similar strength. Such instances of rarity can
include calling someone disabled when they wear a hearing aid for partial
hearing loss, which is relatively uncommon and not calling a man disabled for
wearing glasses for a partial vision loss, because it is relatively common.
For instance, if a person has
crippled legs he will be considered objectively disabled. He will not be able
to walk to his local shops without severe discomfort. He can use a wheelchair.
However, this would also make him less agile or fast on most
pavements/sidewalks than people walking normally. Whilst walking or in his
wheelchair he will look very different and travel more slowly. His wheelchair
is also associated with others with crippled legs. The man cannot do anything
to change his crippled legs, even with strengthening exercises. His legs will
not heal themselves. His condition is also rare and extreme enough to be
different from a great number of people in society.
In terms of our more familiar
subject, we can define blindness as referring to a range of symptoms that
affect the optical information required to fulfil many socially defined tasks. It must again be made clear at this point
that blindness itself is not a disease, it is the
outcome of a disease, a trait it leaves behind. It can also have a range of
forms, and blindness can cause Subjective Disability, although it can also be
considered an Objective Disability.
For instance, for a man to draw a
realistic picture it is assumed that he requires some degree of visual acuity.
He must picture his subject as a whole. He must know that he is drawing
correctly shaped and shaded areas on paper. He must have feedback from the
lines that he has drawn. This allows him to know where to put further lines.
However, these difficulties can be overcome to a large extent, allowing an
artist with no sight to touch. He can also be educated about what he is
touching. He can be taught to use tactile media such as German film, which
rises as soon as it is scribed with a pen. Blindness in this case is not a
Subjective Disability.
To be considered blind, an Objective
Disability, a man must not be able to perform what society deems as most normal
tasks without great assistance. For instance, eventhough
people who are blind can read Braille or large print with residual vision,
their relative speed of reading is severely restricted. The extra technology
needed also requires more storage space. This is less efficiently produced.
People who are blind often have eyes that look different to people who are
considered to be sighted. They wear glasses and carry white canes. If they are
congenitally or early blind, they also often move their heads when talking.
People who are blind often have
little chance of reversing their blindness in the short term. If their condition
is operable, it usually takes a while for healing to take place. Their sight
must also adjust or readjust. Many permanent conditions that cause blindness,
such as cataracts or glaucoma, can be reversed as a result of diet, exercise or
therapy. This takes a long time. Small visual impairments that require glasses
for correction are frequent. Yet conditions that do
not necessarily lead to normal dysfunction, such as photophobia or achromatism, are rarer and regarded as disabilities.
Most cultures have formalised their
rules of defining blindness as an Objective Disability. Many Western cultures
in particular have taken this a stage further. They legally classify the level
at which this weakness of optical functioning disables most social tasks. In
the
Aside from people who have no light
recognition whatsoever, each person’s visual impairment is unique. Medically,
however, the range of symptoms can be classified as: blurred vision, tunnel
vision (where peripheral vision is missing), peripheral vision only, spots in
vision, achromatism (lack of certain or all colours),
or a combination of all these symptoms. It is very rare for someone to be
totally blind. It is much more common for them to have a small amount of light
perception. Therefore, psychologically and sociologically blindness can be
classified in three further ways - I acknowledge Lowenfeld’s
(1981) psychological definition of
blindness for this classification:
So how can this model be useful to the teacher or museum gallery
educator? How can it make the life of the disabled person, or the person with
the disability, more comfortable and fulfilling?
When designing an educational programme for people who are blind or
visually impaired their background must be taken into account. The greater
number of people with this Objective Disability will want to be associated with
a visual culture, will identify it with their previous life. They will want to
feel they are that same person they used to be.
Therefore the experience that they are entitled to – and their culture
is an entitlement – is an adapted version of their sighted experiences. The
language used to describe paintings is more often than not the same. The
cultural references are those you would give to a person through a telephone,
because that, in their mind, is their only difference.
The person born blind or with a severe visual impairment from a very
young age, though, has a different perceptual culture. They will want to feel
that they are of the class, or gender, or ethnicity, or religion they were born
into, but the cultural medium they have to refer to this culture will be very
different, as will their institutional experiences. This means that certain artifacts may have a greater meaning to the person with no
sight than the person with it. I like Gustav Klimt,
Francis Bacon, Lucien Freud and Gilbert & George. However, to the person
who has never seen, these artifacts often mean
nothing, unless they can truly engage with the culture of emotion in the
subject matter. And these emotions will come from a different life experience.
In this case, tactile-contrasting rough and smooth surfaces would mean more.
Therefore the different experiences of education and exclusion of the
congenitally and early blind person must be considered.
Finally, my parting words in this essay emphasise perhaps the most
crucial words of all: context and acceptance. When Gucci make a National Health
Service hearing aid, I will be happy to call myself deaf. But until institutes
and the greater society they say they represent accept that I want to be
considered equal in the culture I was raised in, yet preserve a unique sense of
identity and self expression, I will continue to keep my deafness as close to
the closet as this now socially painful hearing aid will allow.
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© Simon Hayhoe 2004/2006