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)):

 

  1. His ability to perform tasks unaided in a state that is considered comfortable and normal by the standards of his society is impeded by his body. Such tasks can be driving an uncustomised car for someone whose limbs are incapacitated, or watching television for someone who is blind;

 

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.

 

  1. His ability to function in comparison to people who are not objectively considered disabled by mainstream society. Such impairments can include his speed or dexterity are slower even with assistance;

 

  1. His ability to look, sound and smell like the norms that are expected in his mainstream society. This can include being able to perform tasks such as looking directly at someone when talking;

 

  1. His need to use technology and/or symbols that identifies him with a group classified as disabled. Such technological aids can include a man who is blind walking with a white stick or using a guide dog.

 

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.

 

  1. A person not being able to change his situation in a relatively short period of time, and without recourse to major medical interventions. Such situations can be the difference between being immobile because of a severe injury or being overweight;

 

  1. The perceived permanence of a disability. Such is the difference between having sand thrown in your eyes and being permanently blinded by an accident to having cataracts; and

 

  1. The strength of his disability in comparison to the social norms of ability. Such strength can be the difference between having to wear glasses to read and not being able to see at all. This last condition is itself subjective, and depends a great deal on cultural values and conditions.

 

            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 British Isles, for instance, this is 5% sight or 1/20 visual acuity (Coakes & Holmes Sellors (1992)). There is a rider to this condition, though. In the case of traits such as achromatism, visual acuity can increase through lack of normal light perception (Sacks (2001)). The testing of this visual acuity must therefore take place in what are considered to be normal lighting conditions. In this way, the whole of the person is judged according to a rigid scientific/medical test at a particular point in time, under culturally defined conditions.

 

            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:

  1. Congenital blindness: When a man is born blind. The consequence of congenital blindness is that a person will have no visual memory or his visual memory will be based solely on his highly restricted light perception.

 

  1. Early blindness: When a man has gone blind in childhood. Men who are early blind often have visual memories and can often understand visual reference.

 

 

  1. Late blindness: When a man goes blind in adulthood. Around 70% of all people who are blind in England and Wales are over 75 (Department of Health (2001)). This number is still increasing as the older population increases. Much of this population’s perceptual reference is still related to vision.

 

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.

 

Bibliography

 

Coakes RL & Holmes Sellors PJ (1992) An outline of Ophthalmology. London: Butterworth-Heinemann

 

Department of Health (January 2001) Registered blind and partially sighted people year ending 31 March 2000, England. London: HMSO

 

Gregory RL (1974) Concepts and Mechanisms of Perception. London: Duckworth

 

Hayhoe S (1995) The art education of blind adults. Thesis presented in support of the degree of MEd by research, Leicester University, British Isles.

 

Hayhoe S (2000) The effects of late arts education on adults with early visual disabilities. Educational Research & Evaluation 6/3/229-249

 

Hayhoe S (2005) Social and cultural influences on art education in English schools for the blind. Thesis presented in support of the degree of PhD, Birmingham University, British Isles.

 

Hayhoe s (2004) The development of an epistemological model of disability:
The Enlightenment, scientific theories on blindness & arts/crafts education in the
US. Guest lecture presented at Toronto University in March, 2004.

 

Lowenfeld B (1981) Effects of blindness on the cognitive functioning of children. In Berthold Lowenfeld on blindness and blind people: Selected papers. New York: American Federation for the Blind

 

Merleau-Pony M (Smith C Trans.) (2002) Phenomenology of perception. London: Routledge Classics.

 

Sacks O (2001) The island of the colour blind. London: Picador

 

Sacks O (May 1993) A neurologist’s notebook: to see and not to see. New York: The New Yorker Magazine

 

© Simon Hayhoe 2004/2006