Include us, don't make us over

May 7, 1999

Do not 'perfect' disabled people out of existence, just remove barriers, says Mike Oliver (right)

As we approach the millennium, "inclusion" and "exclusion" are increasingly being used as a fashionable shorthand to talk about complex processes whereby certain groups are shut out of society, denied jobs and education.

Disabled people believe that the government's approach to ending this state of affairs is based on a poor understanding of why we are excluded. We are afraid that virtually unchallenged ideas in science, medicine and technology threaten to eradicate us from the future.

The promoters of genetic engineering say it will prolong life -Jfor those of us who are genetically perfect. The rest will be genetically engineered out of existence. Disabled people will be confined to the history books. Occasionally in the new millennium films like The Elephant Man will be made about our wretched lives. Everyone will live healthy, pain-free lives and life-expectancy figures will continue to increase.

The promise of the new genetics has been over-stated, but nonetheless, many disabled people fear that our possible disappearance will not be a matter of progress but one of bitter regret, for society as well as for us. This is not merely a question of positively valuing the difference of disabled people but also of recognising the contribution that genetically non-perfect people have made and will continue to make.

If 21st-century genetic technology had been available to 19th-century eugenicists, the 20th century would have had to manage without the contributions of Stephen Hawking and Woody Guthrie - to name but two genetically imperfect individuals.

Even Prince Charles has expressed his concern about genetics. He recently fuelled the panic about genetically modified food by pointing to its potential dangers. I look forward to the day when he will express similar concerns about genetically modified people. It would, perhaps, be too cynical a commentary on politics to suggest that he never will because the scientific establishment's power is so much greater than that of the farmers' lobby. Nevertheless, what scares you most - a genetically modified carrot or a cloned person?

If we are to successfully integrate disabled people into society, as the government has said it wishes to do, it is crucial that we understand the distinction, drawn by disabled people themselves, between "impairment" and "disability". "Impairment" describes our medical condition, while "disability" refers to the economic, social, cultural and physical barriers we face as we live our lives.

Increasingly, we argue that the solution to the problems disabled people face is to dismantle disabling barriers rather than to cure our physical impairments. If society wants to eradicate impairment, it should remember that its principal causes worldwide are war and poverty, not genetic imperfection.

To create a society wherein disabled people are included, we need remove the barriers inhibiting disabled people's full participation. We have the technology to accomplish these tasks, and we do not need the appliance of genetic science. Whether we have the will is, of course, another matter.

Mike Oliver is professor of disability studies, University of Greenwich.

* What do you think of the genetic engineering of disablities in people?Email: soapbox@thes.co.uk

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