The deaf: disabled, or just different?

By PETER CALDER

The woman's hands move too quickly to follow. She might almost be a magician, or a sidewalk shark who fleeces passers-by with sleight-of-hand card tricks. But she's conjuring a different kind of magic here: the magic of words seemingly plucked from the air.

Across the table, a second woman - a New Zealand Sign Language interpreter - makes meaning from the blur of gesture. She talks at a brisk clip and punctuates her spoken version with all the features you'd expect if the words were her own - interpolations, giggles, snorts.

The voice comes from my right but I can't take my eyes off the woman to my left whose language flows from her fingertips. The intensity of her feeling is plain to see, and not just because she raps the table at times to let me know she's about to start "speaking" or to make her own kind of exclamation mark.

It's an odd experience for someone who hears to sit in a room where the communication is mediated through sign. It's stranger even than the sense monoglot English-speakers have in one of those rare corners of the world where not a word of English is spoken, because the language here doesn't even travel as sound. It's a form of culture shock.

The gesticulating woman at the table would have no problem with that term. Judy Everitt and her daughter Amanda are happy to proclaim that, being profoundly deaf, they are part of a different culture.

The notion that deafness might be seen as a cultural grouping rather than a disability is a highly charged one. An American couple's deliberate effort to have a deaf child sparked howls of outrage around the world. The disapproval they might have attracted because they are lesbians was as nothing compared with the fact that the women, both deaf since birth, wanted a baby who was deaf too.

Sharon Duchesneau and Candy McCullough, from Bethesda, Maryland, sought out a donor whose congenital deafness would increase their chances of having a deaf child.

The baby, Gauvin McCullough, is now 6 months old and has slight hearing in one ear. But plainly the parents see that as a victory. Pregnant, Duchesneau was quoted as saying that "a hearing baby would be a blessing; a deaf baby would be a special blessing".

Their decision was branded cruel and unethical, but it's not hard to find deaf people who understand the couple's thinking.

"It's easy to understand." one told me. "They can go home and totally relax, be themselves."

And even a short time spent in the company of the deaf makes it plain they are happy being as they are.

Sue Nicholson, born profoundly deaf, has a deaf husband and two deaf children. She refuses to accept that her hearing impairment is disability; it's a part, she says, of who she is.

"Deaf people are not disabled," she tells me, in a long, impassioned conversation held through an interpreter in her home in Henderson Heights. "We can walk, we can do the same things as other hearing people can do. We're not sick. There's nothing wrong with us. I don't like the word disability.

"For us, it's the deaf culture. We have sign language and we've got the deaf way, which is different from other people's way."

Pressed to elaborate on what "the deaf way" might be, she thinks for a while. Apart from the commonplaces of domestic organisation (open-plan living spaces lit up almost blindingly bright to help visual communication), she says with a brilliant laugh, that deaf people "never stop talking".

"We can't wait to see each other and as a result we're always the last to leave. We specialise in long farewells. Hearing people say goodbye and they are gone. But deaf people keep talking - they get halfway down the steps and they say: 'Oh, I forgot to say something!' They have so much to catch up on because when they get home they can't use the phone."

She enjoys being deaf, she insists, and not because when she turns off her high-tech hearing aids (which enable her to detect sound but not distinguish speech) she knows a peace that passes all hearing folks' understanding: utter silence.

Amanda Everitt, who was head girl at Kelston Girls' High School last year and is now a first-year student at the University of Auckland, is equally adamant that deafness is a part - if not most of - her identity.

"As a deaf person you feel deaf," she signs. "You have connections to other deaf people. You have your own language which you can't compare with English. Some people think it's just gestures, something we made up because we can't use English. But it's a language with its own grammar and vocabulary."

Amanda's mother, Judy, grew up in a world where signing was actively discouraged.

Her recollection of being "slapped for signing" mirrors the punishment meted out to Maori children in the mid-20th century in the belief that clinging to their forebears' language would handicap them in life.

The fallacy of such thinking is better understood now, but those in the deaf community who celebrate their deafness say their cultural identity is still not widely acknowledged.

"Why do I have to conform?" asks Amanda. "Why can't you accept me as being part of another culture?"

The Deaf Association's Jennifer Brain adds: "Deaf children need to have a sense of pride in who they are. Look at other people in other communities - Croatian, Italian, Greek, Maori. They are raised with a sense of their cultural group plus they mix as New Zealanders. They've got both sides and therefore a more positive self-image. Why is it different for deaf people?"

Whether it ought to be different rather hinges on whether you can see deafness as an identity or a disability. And it's more than a philosophical quibble. At the heart of the matter is the issue of access to resources.

Last month's Human Rights Commission decision that the failure of telecommunications service providers to provide a voice/text relay service discriminated against the deaf and hearing-impaired used the term "disability", but Jennifer Brain of the Deaf Association sees the victory as confirmation that deaf people need to "be seen as equal and that means providing us with access to what everyone else has so that we can enjoy the same quality of life".

The Telecommunications Users Association of New Zealand (Tuanz), which represents the main telecoms providers, predictably doesn't see it the same way. Chief executive Ernie Newman says his members do not think telecoms users should have to fund such a service.

"We believe it is a social service and should be funded [from the Social Welfare budget]," he says.

The Government announced this month that it intends to make the voice/text relay service - a human-operated interchange which relays text messages aurally to hearing subscribers who don't have text-based telephone systems - a Telecommunications Service Obligation, effectively requiring telecoms companies to provide it. But the industry is not likely to cave in.

Newman says he is still awaiting a reply from Communications Minister Paul Swain to an April letter raising its concerns.

Newman is not swayed by calculation showing that providing such a service would add at most 25 cents a month to phone bills.

"Who's to say the floodgates won't open to many other social services being provided by carriers, which would then have to be added to phone bills?"

If the commission's decision was a victory for the deaf, it's plain the battle is not over yet. Likewise their struggle to be seen as culturally different rather than invisibly crippled.

The accelerating development during the 1990s of a new technology called cochlear implantation added a new challenge. The implant - dubbed the bionic ear - takes sound picked up by an ear-level microphone and digitises it into signals that are transmitted to the hearing nerve in the cochlea (inner ear). It allows even profoundly deaf people to hear - and some feel deeply uneasy about it.

The issue was starkly, harrowingly illustrated in an award-winning documentary film, Sound and Fury, which charted the turmoil caused in an extended family when two sets of deaf parents made different decisions about whether to implant their children.

Jim Casey, the education programme manager for The Hearing House, a private foundation set up by surgeons, parents of children with hearing loss and prominent citizens, which raises funds for the $26,000 operations, agrees that the technology has deepened the abyss between the medical and cultural views of deafness.

"It is completely polarised," he says with a sigh. "One is a cultural view of hearing loss based on the idea that there is nothing wrong with having hearing loss and the other focuses on developing the residual hearing that children have. It's about different views of the world."

He does not dispute the notion that some deaf people have of themselves as a cultural group.

"Culturally, those families are completely different and if those parents are happy that their child is deaf and want them to be part of the deaf culture, I would never deny that.

"But probably over 95 per cent of deaf children are born to hearing parents and the vast majority can develop spoken language. My role is to support parents who have a child with a hearing impairment with their determination for their own child."

Rachel McKee who, with her deaf husband David, runs the deaf studies programme in the School of Languages and Applied Linguistics at Victoria University, agrees that most deaf children have hearing parents, who see deaf children differently.

"Hearing parents want their kids to be part of their world," she explains. "Most have never met a deaf individual in their lives and have certainly not come across the idea that there is a way of being in the world which is culturally different for the deaf."

In any case, not every deaf person is "culturally deaf", she adds. "Deaf culture only exists where you have deaf people who have had long periods of socialisation with each other and even within that there are huge variations.

"You couldn't say all deaf parents would be happy to have deaf children. But there are many deaf couples, particularly when they have had other generations in the family who are deaf, who would see deaf as the normal and preferred way of being and having deaf kids as being much easier because you can communicate with them and know that they are going to stay connected to your world."

And that group is not tiny.

"The thing that sets deaf people apart from others is language and communication," says McKee. "Because deaf kids can't fully access the language world of their parents, they gravitate very quickly towards other deaf people, usually when they go to school."

Those of us in the hearing culture - and she includes many who work with the deaf - need to learn that there are other ways of hearing.

"People find the idea of calling yourself culturally deaf a bit weird and maladaptive," she says. "But that's because they feel it is not as good as wanting to be hearing."