New Internationalist

Keynote

Issue 95

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THE DISABLING WORLD [image, unknown] Keynote

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[image, unknown] Peter Adamson
New Internationalist
[image, unknown] Issue No. 95 : Editor, Peter Adamson

The Disabling World
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Frank Bowe went deaf at the age of three. Thirty years later,
he is the Director of the powerful American Coalition of Citizens with
Disabilities and the author of eleven books on disability and rehabilitation.
Peter Adamson caught up with Dr. Bowe in the midst of his preparations
for the International Year of Disabled Persons, 1981.

FIRST met Frank Bowe in Vienna where we talked through the fingers of his sign language interpreter, silently clacking away their rapid messages to Frank's eyes. After twenty minutes or so, I could almost physically feel my own attitudes shifting.

I don't know any disabled people. And as they are 10 per cent of the population, I suppose that means I have avoided them. Circumstance sat me down with Frank Bowe. And at first it was as if I were deaf, not he. I could not absorb what he was saying because I was preoccupied with the notion of talking to a deaf person, watching my sentences become movements of somebody else's hands, and listening to the disconcerting relevance of Frank's replies completing this strange triangular trade in words.

It took a while to dissolve the fixation that I was talking with a `deaf person'. The phrase itself summarises the problem, implying that deafness defines and circumscribes the personality. Slowly I felt `upon the pulse' what I already knew in theory - that there is no such thing as a deaf person, only a person who, by the way, happens to be deaf. The scales began to fall from my ears and I was able to listen as well as to hear.

Bowe lives in New York. And when next in that city I telephoned him. The 'phone was already ringing when I was seized by a sudden thought - how do you have a telephone conversation with a person who can't hear? Stranded in indecision, I was eventually rescued by a secretary and made an appointment to see Frank later that week.

`I'm sorry', said Frank when he turned up, `I left Washington in such a rush that I forgot to arrange for interpreters. Never mind, we'll lip read.'

Once again I was taken aback. Do I have to speak as though I'm talking to someone through a shop window? Frank anticipates the question: `Just speak reasonably slowly and don't exaggerate your lip movements, don't look down or away when you're saying something, and we'll be OK.' In two hours of talking, only twice did I have to write a word down on a scrap of paper and pass it to him.

And once again I went through the same processes of forgetting that Frank Bowe is a 'deaf person'. Only this time it was quicker and more complete because there were no intermediary fingers.

If, so far, this profile is more about the interviewer than the interviewee then, for once, that is probably as it should be. For one of the most important messages which Bowe and others with disabilities want to get across during the International Year of Disabled Persons is that changes in the attitudes of the 'able-bodied' can do more than all the technology under the stars and stripes to improve the lives of those with disabilities.

But the change in attitude can, for me, be summed up very simply. Frank Bowe is not disabled. He's one of the most able people I have ever met. He has an impairment. He can't hear a damn thing. But through his own spirit, through the support of family and friends, and through the luck of the draw in being born into a rich country, that impairment has not been allowed to become a disability. And that, according to Frank Bowe, is the second key message that the International Year of Disabled Persons can help to get across - social attitudes, whether internalised in prejudice and patronage or externalised in public architecture and transport systems, can convert impairments into disabilities. For a polio victim, society can make the impairments of 'not being able to get about too well' into the disability of 'not being able to earn a living'. For a person who is deaf, misunderstanding can convert the impairment of not being able to hear into the disability of not being educated.

Frank Bowe has hauled himself over these barriers, internal and external. In doing so, he has become atypical of the people with disabilities whom he represents. And he knows it. But Bowe, the super-achiever, still cannot hear, still shares an irreducible sadness with those who live in a silent world.

'People come so close tome', he explains, 'they come within inches. Yet they are so very very far away. And so, a lot of the time, I feel like I'm in a glass box. I can see out but I can't reach out.'

`The saddest moments, for me, are the times when I can see the frustration of my two daughters. They are one and four. They get upset because they can't make me understand sound. It frustrates them and it frustrates me. And I can see sometimes that they are beginning to think that maybe their Daddy is a bit stupid. It's that which makes me daydream and fantasise about being able to hear. I think about it a lot.'

Is there any real hope of hearing again? 'Oh yes, the hope is always there. Someday I hope to hear. I follow the progress of research. It's a long way away. But the hope is still there.'

By this time, I've pinned down what is so strange about Frank's answers. His sentences are grammatically constructed. Perhaps that only seems remarkable to a journalist. For when a taped interview is transcribed, it almost always has to be rewritten. People talk in long rambling sentences, ungrammatical and often unfinished, adorned with stray clauses and given shape mainly by the tone of voice. Not so, Frank Bowe. His grammar and sentence structure are those of the written word, not speech.

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"It's OK, we'll lipread" Peter Adamson talks to Frank Bowe (right) .
Photo: UNICEF

The other 70 million
Once this has clicked, the characteristic seems so pronounced that I have to ask about it. Once again he smiles. Here is his answer- verbatim from the tape recorder.

'There is a very, very profound connection between my deafness and my use of language. I lost my hearing when I was three. Since that time, every single word that I've ever learned, every grammatical construction that I've ever encountered, has been through reading. I have never learned a word or a phrase through hearing. And one of the consequences is that I've read not hundreds but thousands of books. There was no incentive to go out to play or to watch television. So I went to my room and read.'

'In the verbal ability test which you take when you graduate, I qualified in the top one-tenth of one per cent of all the graduates in the country in that year. You can transcribe my words and they will probably read like written language - because that's how I learnt to speak at all.'

Although the grammar of Frank's speech is near perfect, the sound is not. Each word is pronounced correctly, but the overall cadence of each sentence is awry, the rhythm of each phrase has a dying fall. And the effect, if one did not know about Frank's deafness, is an off-key, slightly vacant drawl which most of us would easily associate with mental retardation. No impression could be more wrong. Yet it is easy to see how it can lead to attitudes which are embarrassing, patronising, ill-tuned ... disabling.

'One of the commonest complaints of people who are blind or deaf,' says Frank, 'is that they are often treated as though they were mentally disabled. People speak in monosyllables to blind people, shout at the deaf, treat paralysed adults as if they were children.'

Frank Bowe has fought to change such attitudes for the last ten years. And the fight has not always been polite and passive. In 1977, he organised thousands of people with disabilities to occupy the U.S. Government's offices of Health Education and Welfare in Washington and nine other state capitals. The aim was to draw attention to the rights of the disabled and to force legislation to guarantee those rights. In San Francisco, the occupation lasted for 26 days and nights with Safeway Stores donating the food and the Black Panthers bringing it in. `From other protest movements we learnt that you have to convert your weakness into a strength', says Frank, `which politician was going to order the police to physically evict paraplegics?'

Changes in legislation, he believes, have a chicken-and-egg relationship with changes in attitudes. `Passing laws about education and employment for the disabled does not in itself change attitudes. What it does do is to bring people into contact. That changes attitudes. What is happening to the disabled now is comparable to what happened to blacks in the fifties and sixties. There was very significant legislation. And its effect was to bring black and white people together more. So you began to get the conception that black people are not alike. Some are extremely accomplished. Some are extremely poor. Some are very frustrated. Some are very calm. You begin to see the complexities. No longer is the person defined by being black. So you cannot continue to think that the fact of skin colour always and inevitably has certain effects. It begins to become much more personal and much more complex. Gradually, prejudice leaves you. You see bigoted and biased people mellow and change. The stereotypes begin to weaken through contact with individuals. The same thing is happening with disability. As you begin to see blind Ph.D. students as well as blind beggars, you begin to realise that blindness does not define the person. There is no `blind person'. Disabled people are different - as different as everybody else.'

Frank Bowe is one of the 70 million people in the world who are either deaf or have a severe hearing impairment. And meeting with him reminded me of another of those 70 million whom I had met many years ago and many thousands of miles away from New York. The year was 1972 and the place was a dark room just off Calcutta's ring road.

I was not introduced to Dilip Mukherjee. His brother told me about him as Dilip himself sat in the corner of the room staring at the floor. Like Frank Bowe, Dilip lost his hearing in early childhood. And as I listened to Frank's precise replies I remembered the strange shapeless noises which came from Dilip's mouth. He had never learned to speak.

Because of the poverty into which he was born, his family had neither the money nor the time nor the opportunity to give him the extra help he needed to over-come his hearing impairment. Deprived of stimulus since infancy, unable to read or write or find a job, Dilip has become more disabled with each passing year. Yet behind those uninquisitive eyes may have been a person with as much potential as Dr. Frank Bowe. Circumstance, not impairment, has put this gulf between two men. For both are deaf, but only one is disabled.


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