Saturday, May 11

Is deafness a disability?


Noise is all around us. And some of it is deafening: it contributes significantly to the hearing loss suffered by roughly a tenth of the population. Of these, 80 per cent have hearing damage that is irreversible and permanent. To most people, deaf and hearing alike, this is an undeniable disability.

But many deaf people do not regard themselves as disabled. Unlike other groups described as having disabilities, deaf communities have their own languages. A proud, distinct deaf culture with its own rules of social interaction, values, group norms and identity has evolved Some people see inability to hear in the hearing community as essentially the same as ignorance of sign language in a deaf community: a social disadvantage or handicap, rather than a physical disability. This is known as the ‘cultural view’, which is in sharp contrast to the ‘pathological view’ usually held by mainstream society.

True, we are all at the same kind of disadvantage whenever people speak a language we cannot understand. But we, the hearing, are lucky: over time, and with effort, we can always learn the language in question. Being incurably deaf means that your comprehension will never improve however long or hard you try--or however long and hard your parents, teachers and other people try to ‘help’ you. Most deaf people have had a hard time trying to learn the skills that others have well-meaningly attempted to teach them. Although subjected to many hours of training, repetition and nagging, they have not managed to master speech and understanding of spoken language. Only a few have succeeded with the traditional methods.

‘Disabled’ means ‘rendered incapable of action or use, esp. by physical injury; incapacitated’ (OED). This suggests that being disabled means having lost an ability or capacity one formerly had. People who have been deaf since birth have suffered no such loss, and studies confirm that it is they--the prelingually deaf--who least often perceive their own deafness as a disability, and most often identify themselves as Deaf (with a capital ‘d’, i.e. in terms of culture and community). The great majority of people with hearing loss, who are partially deaf (‘hard of hearing’ or ‘hearing-impaired’), on the other hand, have no contact with ‘Deaf culture’, and do not use sign language. But society tends to lump together all those whose hearing is less than perfect, and regard them all as ‘disabled’.

Presumably, everyone with any kind of disability has come up against prejudice of one kind or another. Mike Squire writes with wry humour of ‘Disability Etiquette: Life at the Bottom Level’ (at http://www.jtsma.org.uk/mike/btm.html): ‘I sit in a wheelchair with my head 4ft off the ground, which is the height of handbags, umbrellas and human bottoms . . .’ Some people pat him on the head, and make him feel like a six-year-old. The most common example of prejudiced behaviour he encounters is people talking about him in the third person:
‘I have never heard anyone say "Does he take sugar?", but two of my favourites are "He must have come from Stoke Mandeville?" [the centre for wheelchair sports in the UK, CJ] and "Is he allowed to drink?" (never!!! ed.). This does not happen too often, and when it does it is only embarrassment and ignorance, but it is very aggravating . . .’
There is the ‘spread effect’: many people assume that the senses, abilities or personality traits of an individual who has one handicap must be adversely affected, or that the whole person is impaired. Some people shout at the blind, for example, or don’t expect people who use wheelchairs to have the intelligence to speak for themselves. Avoiding contact with people with disabilities owing to fear or doing or saying ‘the wrong thing’ is common. Disabilities in general, and deafness in particular, are widely thought to make people lonely, isolated and ‘strange’.

Throughout history, the deaf and hard of hearing have suffered from misunderstanding, prejudice and oppression. Like so many minorities (not to mention women), they have their tale of de facto second-class citizenship to tell. To many deaf writers--such as Albert Ballin, whose 1930 autobiography, The Deaf Mute Howls, is reviewed at http://gupress.gallaudet.edu/0734.html--the quest for dignity and self-assertion in the community is an overriding and passionate concern. Ballin’s great ‘Remedy’ was for sign language to become universally known among both hearing and deaf people. Unfortunately, this is no closer to fruition than it was in Ballin’s lifetime. Instead, sign language is still suppressed in many parts of the world.

Linguistic oppression

In post-revolutionary Republican France, the dominant linguistic group pursued intolerant and sometimes brutal policies towards other groups; and this group, by continuing to consistently reject attempts to introduce administrative languages other than French, has effectively silenced linguistic minorities such as the Bretons. After the Franco-Prussian war, the Prussian victors suppressed the teaching of French in Prussian-occupied Alsace and of Polish in Prussian-occupied western Poland. In Turkey, the view of Atatürk was that the Kurdish language (which is unrelated to Turkish) was a Turkish dialect; speaking it was illegal for more than seven decades of the 20th century; and the existence of the 10 million or so Kurds in that country was not even recognised until 1991 (they were referred to as ‘mountain Turks’). Meanwhile, in Australia the aboriginal Dyirbal language of north-eastern Queensland is one of several that are about to die out, joining the many that are already extinct.

The above is but a small sample from the global history of linguistic imperialism and oppression. In a world of nation-states, linguistic minorities have often been trapped between the ‘native reserve’ and cultural genocide--isolation, neglect or exclusion from the benefits of modernity, on the one hand, and full absorption by the hegemonic group on the other. The rage and despair felt by the Bretons at the end of the 18th century, the Alsatians and Poles in the 1870s, the Kurds for most of the 20th century and the Aborigines over the past two and a quarter centuries are entirely understandable. And that rage and despair--experienced in varying degrees by countless other linguistic minorities, past and present, whose rights have been trampled upon--must be paralleled by the fully justified resentment of the deaf. Their sign language is, after all, their lifeline--a means of personal and community development that cannot otherwise be achieved at all.

Lip-reading is still widely thought to be a solution to deaf people’s problems. But imagine trying to lip-read a language you have never heard clearly, or even at all. Many letters of the alphabet make similar lip patterns--‘m’, ‘p’ and ‘b’, for instance. Even when speakers face the deaf person, their mouths are fully visible and they articulate clearly (conditions that are often not fulfilled), lip-reading is largely guesswork. And it is virtually impossible in a group situation.

Is it society’s response to deafness that, above all, disables the deaf individual? Deaf children’s biggest handicap is sometimes said to be not the deafness as such, but having hearing parents who know little about deafness and are unable to communicate with them. Some 90 per cent of deaf children have hearing parents.

Deafness in childhood

A child’s deafness can, in some ways, become a positive experience for families: it gives them opportunities to enrich their lives and develop new skills. By learning sign language, they acquire the ability to communicate with deaf people--a skill few hearing people possess. They may come to appreciate the sensitivity of visual and tactile perception that a deaf child experiences and conveys.

In Perspectives in Education and Deafness, Practical Ideas for the Classroom and Community (Vol. 16, No. 1, September/October 1997), in an interview (transcribed at http://clerccenter.gallaudet.edu/products/perspectives/sep-oct97/tucker.html), James E. Tucker (Superintendent of the Maryland School for the Deaf) was asked to identify the most important factor in the academic success of deaf pupils. He replied with reference to infant language acquisition:
‘Neurolinguistic research suggests that the window of opportunity to learn language naturally is 0–36 months. If we miss that period, neurolinguistic pathways may become less flexible, more rigid. That's why early intervention is critical with deaf and hard of hearing children—and that's why language is the critical issue of deaf education.’
Tucker sees the claim that present-day technology enables a deaf person to understand up to 80% of spoken English as all very well for social settings. But it should not be considered acceptable for classroom learning. He says: ‘I faked my way through public school, and I am familiar with this charade . . . Less than 100% comprehension in class is not acceptable.’ This, to his mind, makes sign language and the use of written English crucial. When he meets the governor of Maryland to discuss his school’s budget, for example, he can choose between ‘understanding him 80% of the time through lipreading and the use of my residual hearing, or understanding him 100% of the time through a certified interpreter.’ Since millions of educational dollars are at stake, his choice is obvious.

At http://dww.deafworldweb.org/pub/c/rjc/disabled.html, Roger J. Carver writes:
‘Parents may feel that their deaf child is missing a lot in life, like being unable to hear dragonflies buzzing, the wind whistling through the trees or the roaring of a waterfall. Such regrets are unnecessary: the deaf child perceives things in a different fashion: the zig-zagging dragonfly’s iridescent wings vibrating in the sunlight, the breeze . . . the leaves trembling high above . . . the cool, white spray rising from the waterfall.’


Another concern of parents is safety. One might expect deaf people to be at risk because they cannot hear sounds that might alert them to potential dangers. But death or injury due to deafness is, according to Roger J. Carver, very rare:
‘Through natural adaptation, the remaining senses of the deaf become more sensitive than those of the average hearing person to environmental cues. Their peripheral vision tends to be better developed than that of the hearing, explaining why many deaf persons seem to have eyes in the back of the head. Auto insurance industry figures over the past few decades consistently show that deaf drivers have fewer accidents than hearing drivers on a per capita basis.’
Carver describes what it is like to ‘live by rules dictated by the hearing majority’. The deaf are obliged to designate themselves ‘disabled’, going along with the ‘pathological parameters arbitrarily formulated by bureaucrats and clinicians’ so as to obtain cochlear implants and other hearing aids, gain access to specialised programmes and services and get tax breaks on expensive technical devices that make their daily lives easier. To the hearing, devices for the deaf are ‘medical’ devices or ‘special assistive living aids’. But deaf people see such devices as ‘mundane, everyday instruments’ in much the same way as we, the hearing, regard our telephones, TVs, alarm clocks and doorbells.

Carver argues that to someone who grew up with the ability to hear and was deafened (a postlingually deaf person), deafness is a true disability that requires medical and rehabilitative intervention and support. What he and the deaf community object to is ‘medical and rehabilitative intervention when it is applied to the young, prelingually deaf child.’ He argues that ‘if any intervention is required in the case of young deaf children, it should be first applied to the child’s parents and other family members in order to help them to understand the nature of deafness and to develop different skills and strategies to deal with it.’ This sounds good sense to me--or, at least, for the family to receive such training at the same time as the child undergoes the medical treatment and rehabilitation.

Carver points out that a natural, sociocultural approach that incorporates the elements of both deaf and hearing cultures through the medium of sign language, has ‘worked wonders for many families’. It is, of course, far better--as well as easier--to prepare a deaf child for a life as a strong, confident and successful deaf adult than as a weak imitation of a hearing person who runs a high risk of becoming a misfit in a hearing world.

‘Deaf Pride’ sounds fine to me as a slogan and a movement. Isn’t anything that boosts the solidarity and self-esteem of a disadvantaged group, raises public awareness of the true facts and combats prejudice against its members a ‘good thing’? I’m all for everyone being proud of the way they are. The same applies to homosexuals--and I see no reason why they should be deprived of the joys of parenthood, either. But in principle, as I see it, no parents’ wishes should take precedence over their children’s rights and opportunities.

‘Designer babies’ with a difference

The Washington Post reported on 31 March 2002 that a deaf lesbian couple, Sharon Duchesneau and Candy McCullough (‘productive, self-supporting professionals’), have deliberately produced not just one, but two deaf children. Each time, they maximised the chances of a deaf baby by selecting a sperm donor with a family history of deafness (for five generations). Delighted to hear the result of their three-month-old elder daughter’s hearing test, they logged it excitedly in their baby book: ‘Oct. 11, 1996--no response at 95 decibels--DEAF!’ And they were so pleased with the success of their plan that they decided to repeat it.

Talking to Liza Mundy, the staff writer on The Washington Post Magazine, the couple explained how they wanted ‘to share the wonderful aspects of our deaf community with our children’. Like so many parents, they socialise mainly with other parents of children the same age as their own. ‘For Sharon and Candy, one of the great advantages of having a deaf child is that it gives them a built-in social life.’ Mundy writes. They also believe it is easier for them to raise a deaf child than one who can hear. What is more, they get day care and a good education for their children free of charge. At the Maryland School for the Deaf, both day care and education--including small classrooms, extra teachers and transportation--are free, paid for with public funds. So advantageous is MSD, in fact (writes Mundy), that ‘one of the things Candy and Sharon think about is how much more a hearing child would cost’. If the baby is hearing, they would have had to pay a very great deal for day care and education of an equivalent standard.

Sharon and Candy evidently see themselves as generous, selfless and exemplary parents. To others, they are selfish beyond belief. Even if deafness is not defined or regarded as a disability, there is no denying that it is a sensory deficit that limits a person’s experience and potential. A profoundly deaf person cannot, for example, experience the joy and solace that music affords--only its vibrations. Isn’t it every parent’s duty to maximise their children’s capacity to enjoy and experience life to the full--their advantages, chances and choices in life, their resources and adaptability to whatever situation they encounter? And to and minimise and, as far as possible, eliminate any limitations to which they are subject? Sharon and Candy evidently don’t think so.

Mundy quotes Nancy Rarus, a staff member at the National Association of the Deaf--emphasising that she is speaking personally and not on behalf of NAD--as saying:
‘I'm a social animal, and it's very difficult for me to talk to my neighbors. I wish I could walk up to somebody and ask for information. I've had a lot of arguments in the deaf community about that. People talk about, “The sky's the limit,” but being deaf prevents you from getting there. You don't have as many choices.’
‘I can't understand,’ she adds, ‘why anybody would want to bring a disabled child into the world.’ But Sharon and Candy don’t, of course, see themselves as having done this. Rather, as they see it, they have brought ‘a different sort of normal’ child into the world.

Nonetheless, as Cathy Young wrote in The Boston Globe, deafness imposes undeniable limitations. Sign language is no good in the dark or if your hands are busy. Being unable to hear an approaching car, a fire alarm or a baby’s cry is an obvious impairment. But such truths are brushed aside by the ‘Deaf Pride’ radicals. One hearing champion of ‘deaf culture’, the psychologist Harlan Lane, claims that defining the deaf as ‘impaired’ is like defining women as ‘non-men’.

‘One can only hope that this practice of intentionally manufacturing disabled children in order to fit the lifestyles of the parents will not progress any further,’ says Ken Connor of the Family Research Council . ‘The places this slippery slope could lead to are frightening.’ I cannot help but agree.

Purposely creating human beings with impaired faculties will presumably remain something only a tiny minority of people would want to do. Most people’s fears of the ‘slippery slope’ focus, instead, on the implications of eliminating (both before conception and, through prenatal testing and diagnosis, after it) traits deemed undesirable. The overall aim is undoubtedly to prevent needless suffering. But one risk of genetic testing and screening is that they may come to exacerbate the oppression suffered by those who are identified by society as ‘disabled’, ‘deviant’ or simply different. The new genetic technologies are even seen by some as means of oppression and control that will further devalue the lives of people identified as having disabilities--including the deaf.

Further reading
-- Review of and preface to the First Edition of Angels and Outcasts--An Anthology of Deaf Characters in Literature, edited by Trent Batson and Eugene Bergman: http://gupress.gallaudet.edu/excerpts/AAOpreface.html
-- Disability Etiquette--Use Words with Dignity: http://www.crinet.org/moreinfo/etq3.htm
-- Cochlear implants: http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA010723Cochlear_implants.html

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THE HUMOR OF MELVIN DURAI
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"SHARING THE PRIVILEGES OF PREGNANCY"

In recent years, it has become trendy for men with expectant wives to say, "We're pregnant." It's their way of sharing the pregnancy, being part of the wonderful experience. I've never tried this, because my wife would quickly put me in my place: "I'm pregnant. You, my dear, are just a spectator."

Indeed, I feel more like a spectator than anything else -- though the instructor at our childbirth classes keeps calling me a "coach." I'm supposed to coach my wife when she's in labor. I can't even coach her when she's in ecstasy. I have no coaching experience whatsoever. Couldn't we hire Phil Jackson or someone?

Truth is, I want to be more than just a coach or spectator. I want to be pregnant. The world's first pregnant man.

Yes, I want to have a big stomach. I want to wear maternity clothes. I want to walk like Daffy Duck.

Don't get me wrong. I don't want to actually bear a child, unless I can get someone else to bear the pain. I just want to carry the baby around for several months before birth, while my wife caters to my every need. "Honey, this pregnancy is stressing me out," I'd say. "I really need to relax. Can we watch some football tonight? Perhaps you can rub my feet, too, as soon as you've finished massaging my back."

Yes, I want to enjoy the privileges of pregnancy, as described recently in BabyTalk magazine. I want to walk onto a bus and ask a man to give up his seat for me. If he hesitates and asks, "Why?" I want to look right into his eyes and say, "Because I could pop a baby any moment and don't want to do it standing up! Is that a good enough reason for you?"

I want to ask my mail carrier to bring the letters right up to my door. If he complains that he has a lot of mail to deliver, I want to point to my belly and say, "How would you like to deliver a baby instead?"

I want to have cravings, dozens of cravings I have no control over. I want to order pizza seven days in a row -- and just for breakfast. I want to have ice cream for lunch, gulab jamuns for dinner, and steak for a midnight snack. If my wife says I'm eating too much, I want to reply, "Stop complaining. I'm not eating all this food for myself. I'm eating for the baby. If I don't eat more pizza, the baby might starve. Do you want that to happen?"

I want to park in the "expectant mothers" spot at my local grocery store, so I can rush in and get whatever I'm craving. I want to ask the store clerk to carry my groceries to the car, because I'm already carrying quite a load.

I want strangers to ask me when I'm due and if it's a boy or girl. I want to enjoy the shame on their faces when I say, "I'm NOT pregnant. I've just been eating pizza for breakfast."

Of course, all these privileges are nothing compared to the hardships of childbirth, as any woman would rightfully tell you. It's just another reason to appreciate mothers. They may enjoy a few privileges along the way, but in the end we're the ones who should feel privileged.
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(c) Copyright 2002 Melvin Durai. All Rights Reserved.

Melvin Durai is an Indiana-based writer and humorist. A native of India, he grew up in Zambia and moved to the U.S. in the early 1980s. Read his previous columns at http://www.melvindurai.com
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