From Disability to Minority

Is deafness a disability? Of course it is, most people will answer. We have five senses, and the absence or impairment of any one is a disabling medical condition. Those with impaired hearing will say the same. But those who use sign language and who describe themselves as Deaf will argue otherwise.

They will point out that if it is a disability, it is very different because Deafness is the only disability with a language, a distinct culture, and a sense of tradition and history. They might add that Deafness is not a pathological condition. Deafness does not cause illness and Deaf people do not ‘suffer’ deafness: they merely are Deaf. And they might turn the tables and quote the traveller’s dilemma — in a room full of people using signs or spoken foreign languages, it is the hearing person and the English speaker who has a social disability. There is no equivalent comparison with other disabilities. Therefore, they would say that Deafness should be defined as something else.

The question arises because Australia’s Deaf community is coming to terms with how biotechnology in the form of the bionic ear, or the cochlear implant, and genetic manipulation are bringing about profound changes in deafness. Some might argue that ‘change’ is merely a code word for elimination; that biotechnology is merely the latest of several attempts, going back to the nineteenth Century, to eradicate deafness and therefore Deaf people, their language and their culture.

In 1880, ninety-eight years before Rod Saunders became the first person in the world to receive a cochlear implant, a conference of educators of deaf children voted to ban sign languages around the world. The educators favoured ‘oralism’ – the belief that deaf children could be taught to speak and lipread. This conference, known as the Congress of Milan, was dominated by clerics from assorted religious schools in Europe. Against a backdrop of Social Darwinism, these good clerics denounced sign language and insisted that speech was what restored the deaf to society. They demonstrated this principle with a cheerful insouciance by banning deaf people from attending the Congress. The clerics played the theological card by insisting that the very act of signing was sinful. The Congress of Milan set in chain a sequence of events that spread oralism all around the world, and led to a downgrading and removal of sign language and deaf teachers and professionals.

Where Deaf people are concerned, the Congress of Milan, oralism and the advent of hearing aids represent the past, and oralism and the cochlear implant represent the present. And soon to come is genetic manipulation. But Deaf people are not yet extinct. Why have Deaf people endured? The answer can be summarised in one word — language — and it can be symbolised in one small matter of punctuation: the difference between deaf and Deaf.

Until recently, the world’s sign languages were thought to be crude, primitive strings of gestures much inferior to speech. Those who used sign language were regarded as mentally below par, incapable of education beyond the basics, and best suited to menial work. Deafness was emphatically a disability.

It was not until the 1960s and 1970s that linguistic research in the United States revealed that sign languages exhibited all the traits needed to define a language. The impact of these findings spread around the world, and soon Deaf researchers and academics began to investigate, define and write about Deaf culture, the Deaf community and its relationship with hearing people.

The flow of ideas to Australia saw its fruit during the 1980s. The landmark achievement of this decade was the research and compilation of the first dictionary of Australian Sign Language by Trevor Johnston, a hearing son of Deaf parents. Johnston’s native language is Auslan and it was he who coined this word from Australian sign language, which was accepted in 1991 as a community language in the National Policy on Languages, creating far greater education opportunities for Deaf people.

Alongside the revelation of Auslan, a number of significant changes occurred during the 1980s. Deaf activists from around the country formed a national body, the Australian Association of the Deaf. In Melbourne, Deaf academic and researcher, Breda Carty, developed and wrote the first Australian curriculum for Deaf Studies. In Victoria, a state consumer group of Deaf and hearing-impaired self-help and special interest groups, the Victorian Council of Deaf People (VCOD), was formed, gaining funding for disability self-help groups from the then Cain state government. Deaf Australians started to become more organised, politically acute and, for the first time, a bit media-savvy.

Continuing support from successive federal governments for the policy of multiculturalism created a favourable climate in which Australian Deaf researchers could examine Deafness. They soon regarded it as a linguistic and cultural minority. This took into account the new status of Australian sign language, the new sense of community and a sense of validation of Deaf traditions, events and festivals, some of which dated back to the 19th Century. Capital ‘D’ Deaf began to be written. It captured the sense of being Deaf by people who saw themselves as Deaf, felt a sense of belonging with a Deaf community, and did not see being Deaf as a deficiency or as an inferior state. In other words, to be Deaf was another variation of the human. Some Deaf people began to describe themselves as culturally Deaf.

Such changes helped Deaf people distinguish themselves from hearing-impaired people who have a hearing loss and who speak. The majority of hearing-impaired people, whose numbers in Australia could approach the millions, are those who were born with normal hearing that declined in later life.

Australia’s Deaf community needed to have such changes recognised. If the 1980s were a good time to be Deaf, it was also the time when the cochlear implant program was in full swing. There was enough success from operations on adults for the procedure to be extended to small children. The 1980s were also the peak time for the cochlear implant’s cheerleader, the annual televised marathon fundraising effort called the Deafness Appeal Telethon, on ATV 10.

These telethons had two purposes: to raise funds for cochlear implant research; and to sell the cochlear implant to the public. The telethons did so by painting Deafness in the worst possible light. They portrayed Deaf people as helpless, suffering in silence and doomed unless viewers donated money to help pay for research for a cure called the bionic ear. Theme songs like ‘A World Without Music’ and slogans like ‘Let them hear how much you care’ manipulated guilt and made viewers feel very glad they were not Deaf.

It is well known that the early response of Deaf people to the cochlear implant was one of anger. Some of this anger was directed at what the cochlear implant had to do to raise funds. VCOD tapped into and expressed the widespread ill-feeling from Deaf Victorians at the way Deafness was being portrayed in these telethons. VCOD was affiliated with federations of disability self-help groups that supported its efforts to raise questions about the telethons. VCOD drew off some of the emerging political muscle from the disability rights movement, which was behind the efforts to end the telethons for the then Spastic Society.

VCOD examined the 1985 telethon in detail, and compared it against three sets of fundraising codes of ethics governing the way people with disabilities were portrayed. To no-one’s surprise, VCOD found evidence of numerous violations of these fundraising codes, such as an image of a Deaf child begging viewers for money. VCOD asked that funds be raised in a way that did not patronise Deaf people. This request fell on hearing ears and the telethons continued for a few more years.

To hearing people, the relative anonymity of Deafness, coupled with the universal assumption that all Deaf people wanted to hear, meant VCOD’s protest came as a profound shock. Hearing-impaired people were mostly enthusiastic supporters of the cochlear implant. They outnumber Deaf people by a ratio of something like several hundred to one, and no doubt helped the impression that all deaf people ever wanted was to hear again. As defined by hearing people, especially by interests behind the cochlear implant, Deafness was a disability that needed to be cured. But Deaf people saw it in cultural terms as something to be recognised, valued and preserved. Thus the telethons represented the first clash between deafness and Deafness; between what hearing people assumed it was, and what Deaf people now claimed it was.

Meanwhile the cochlear implant program surfed the wave of feel-good publicity, gained research funding and no longer needed the telethons. But even as the telethons were phased out, Deaf people found themselves on the receiving end of an undeclared public relations war. In reality, there was no contest. The cochlear implant moved effortlessly into the vacuum of the profound lack of knowledge by the community of anything about deafness. Professor Graeme Clark, the inventor and developer of the cochlear implant, would summons a press conference, and the evening’s news and the following day’s papers would feature stories and pictures of happy children, delighted parents and beaming scientists.

The Deaf side of the equation — that most Deaf people were perfectly happy to be Deaf — had almost zero news value.

There were no elite Deaf sportspeople who might have combined a high profile with some awareness and insight. Deafness very rarely appears in literature, the arts, popular culture or in mass entertainment. No Australian Deaf writers have had published their experiences of being Deaf. (Naturally, publishers have released books celebrating the ‘conquest’ of Deafness.) Occasional Deaf achievers who made it into the news did so in a reporting context that marvelled at how well they ‘triumphed’ over disability. As the cochlear implant program gained international acclaim and prestige, the Deaf community could not capture airspace for its simple message that, really, it was okay to be Deaf.

So completely had the cochlear implant captured public opinion, that former Victorian premier Jeff Kennett, in his last State Election campaign in 1999, could promise $20 million so that every Victorian child who could benefit from a cochlear implant would have one. It is inconceivable that either Kennett or his advisers could have promised $20 million to subsidise and boost a variety of devices and services used by both Deaf and hearing-impaired people, for example visual smoke alarms, interpreting services, specialist teachers, social research and support for self-help groups. Kennett’s promise was an apt demonstration of the truism that governments of all political stripes will always find dollars for something they really want to support. It also demonstrated the populist view that biotechnology, like the cochlear implant, was far more glamorous and a lot sexier than, for example, hearing aids.

As if capturing public opinion was not enough, the cochlear implant gained the approval of the Food and Drug Administration in the United States, and along arrived Cochlear, the commercial arm of the cochlear implant. It rapidly became a stockmarket darling. In a magazine interview in 2002, Cochlear’s then-CEO dismissed Deaf people as a ‘burden’, saying the cochlear implant turned them from tax dependents into taxpayers and productive members of society. Its executives have a strong commercial zeal for implanting as many Deaf and hearing-impaired people as possible.

By now, the claims of Australia’s Deaf people were barely a whisper in the tumult. How can Deaf people have survived more than a century of oralism, biotechnology and its commercial interests? Part of the answer is simple: young hearing-impaired people have not behaved in ways that oralists and biotechnologists have assumed they will.

Graeme Clark’s story of his development of the cochlear implant, Sounds from Silence, is an engrossing account of a man who fought for something in which he deeply believed. Through scientific scepticism, research setbacks and funding crises, Clark never lost sight of his dream of granting what he calls ‘the gift’ of hearing to those without it. A striking feature of his book is the breadth and depth of medical, electronic and audiological research conducted to develop the device, especially with children.

But, in contrast, it is staggering to realise that almost no social research has been carried out on what happens when deaf children, brought up with a cochlear implant, become adolescents and adults. It is known that some do take part in the Deaf community, and a very small number have even asked for their implants to be removed. But many also have no association with Deaf and hearing-impaired people. No-one is aware of the extent to which they live as hearing people, how effectively they do so, or whether they live in a twilight world as neither Deaf nor hearing. There is obviously a great desire to implant children, but it seems there is little desire to know what happens to them when they grow up. Sounds from Silence reinforces this message by a cover design dominated by images of small children.

As an example of what we do know, the experience in Victoria of two groups of young hearing-impaired people over two decades from the 1970s suggests they voted with their hands when it came to communication. A Melbourne group, which became known as Earforce, was founded by parents and was made up of young people who attended mainstream schools, supported by the Visiting Teacher Service for Deaf children. The parents founded this group because they were extremely concerned at the isolation of their sons and daughters who in most cases were the only Deaf pupils in mainstream schools. In Ballarat, teachers supported a group of Deaf ex-students from the local Deaf school founded on oralist ideology.

All these young people had oral upbringings, meaning they were exposed to neither sign language nor to the values of the Deaf community. In time the influence of the parents and the teachers ended. Both groups became independent and were controlled by the young people themselves. Neither group ever made rules about communication; in particular, neither group attempted to ban sign language. Both groups thrived, Deaf people who signed began to participate, and eventually sign language took its place as a method of communication. For these young adults it may not have been the Auslan as practised by native signers, but neither was it pure speech.

In spite of claims about ‘restoring’ the deaf to hearing society, these young people made their own society; in spite of claims of the ‘gift’ of hearing, they sought the company of others like themselves. They did so because of the most fundamental reason of all: in spite of ideology, in spite of biotechnological sophistication, Deaf and hearing-impaired people have always found it far easier to communicate with others like themselves than with hearing people. But they did not exclude hearing people. By learning about communication, many learnt to communicate with hearing people.

Even if Deafness is not a disability, it is obvious that the Deaf community retains links with disability. There was a hidden irony in the way VCOD’s opposition to the telethon drew on support from disability groups to indirectly press a claim that Deafness was not a disability. With hindsight, this can be interpreted as an example of an alliance that Deafness formed with disability. Furthermore, Deaf groups like VCOD and its national body, the Australian Association of the Deaf, rely on funding from disability sources.

Are Deaf groups therefore hypocritical if they accept such funding? It is a reasonable question to ask. Deaf activists counterargue by insisting that it is attitudes and the environment, not Deafness itself, which are disabling, and therefore they have every right to use such funds in efforts to change a disabling environment so it better accommodates Deafness. The apparent funding contradiction may be better explained as an example of the way in which Deaf groups are developing a complex relationship with disability. A good example is the Disability Discrimination Act (DDA), passed in 1992, which makes it illegal to discriminate on the basis of disability.

Placed in juxtaposition, the cochlear implant and the DDA show how biotechnology and legislation illustrate different approaches to change. The cochlear implant alters the person to fit the system; the DDA alters the system to fit the person. The cochlear implant uses surgery to change the human body to lessen the impact of that which makes it difficult being deaf. The DDA uses legislation to change those things about society that make it difficult being deaf. To take the example of captions on films in cinemas, the cochlear implant would in theory make it possible for a deaf person to conform to the system that expects all people to hear the soundtrack of a film. The DDA, however, seeks to alter the system by ordering cinemas to provide captions for those who will not hear the soundtrack. The cochlear implant seeks uniformity; the DDA acknowledges diversity.

Does the cochlear implant do good? Most emphatically it can. For hearing-impaired adults who seek the return of a sensation of hearing, the cochlear implant has shown it restores some environmental sounds, boosts the ability to lipread, and recaptures a sense of the hearing which these adults have dearly wished to regain. Bob Willis, who runs a business specialising in electronic devices for Deaf and hearing-impaired people, says the cochlear implant has transformed his life because it has made communication with people so much easier. He now uses the telephone, and he can converse with people without seeing their faces. He could not do these before his operation. Yet Willis still describes himself as hearing-impaired. But he also uses sign language, participates easily within the Deaf community and mixes with hearing people.

The cochlear implant obviously does much good, yet it is also capable of great harm. Its most destructive effect is neither the device nor the surgical procedure, but the way it has inadvertently encouraged an incessant demonisation of Deafness. The Deafness Appeal Telethons were a blatant example. It is a matter for speculation the extent to which such demonisation has frightened off hundreds of thousands of people with hearing impairment from electronic technology that could make a major difference to their lives.

The National Acoustic Laboratories estimates that of all people who could benefit from hearing aids, only one in five actually uses them. This proportion is worse when it comes to the teletypewriter (TTY), which when used with the National Relay Service, allows access to telecommunications, regardless of degree of hearing loss. Those who take advantage of the TTY and the relay service are believed to be a fraction of all those who could benefit from it. Both the hearing aid and the TTY are visible devices that tell the world their user is Deaf or hearing impaired. The profound lack of social research means no-one knows if this is exactly the reason why such devices are so little used.

Much of the popular attitude to deafness is caused by a black-and-white view — it is either hearing or it is silence. If hearing is good and normal, then Deafness must be bad and abnormal. That is why for more than one hundred years hearing people have tried to eradicate Deafness. Deaf historians have noted a repeated pattern — the cochlear implant is merely another wave, and the Deaf community has responded as it did to previous waves, by absorbing the newcomers, and now, by holding fast to notions of language and culture. Thus hearing-impaired people brought up in the best oralist traditions have been welcomed into the Deaf community if they have a live-and-let-live acceptance of Deaf people. Those with hearing aids are a normal sight in Deaf community gatherings, and this is now happening with some of those with a cochlear implant.

These newcomers are still Deaf or hearing impaired. They would not be part of the Deaf community if they did not see themselves as such. What governs participation is less the technological device and more the attitude. By re-badging deafness from a disability to a community that is a cultural and linguistic minority, Deaf people have endured. The greatest threats are things which cannot be seen: the weight of lopsided public opinion, negative attitudes, ignorance, and medical and commercial interests. The Deaf community now has to examine whether these threats are reaching such a critical mass as to threaten the existence of Auslan.

Just as Auslan is neither a better nor worse language than English, the state of being Deaf is neither better nor worse than the state of being hearing. But it is different. Being Deaf has actually less to do with hearing loss, and more to do with a different way of looking at the world. And as long as society values diversity and difference, then there will be people who are Deaf.

Michael Uniacke works in community development and is a freelance writer with a major interest in Deafness and hearing impairment. He is completing an autobiographical novel about growing up in a family in which four out of five children were born Deaf to hearing parents. He is a member and was a former employee of VCOD, and has worked in other Deafness organisations. The analysis and opinions in this article are his own.

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