Jane Campbell: Don't be fooled, we don't all want to kill ourselves

We live with the negative stereotype that disability equals a state worse than death
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The Independent Online

In Switzerland yesterday Reginald Crew, a man terminally ill with motor neurone disease, took a fatal dose of barbiturates prepared by a doctor and ended his life. There is a gathering momentum to legalise assisted suicide for those who feel life has become unbearable. Some feel that such people as Mr Crew, who say they have nothing to live for, should be allowed to end their lives without having to go abroad to do so.

In Switzerland yesterday Reginald Crew, a man terminally ill with motor neurone disease, took a fatal dose of barbiturates prepared by a doctor and ended his life. There is a gathering momentum to legalise assisted suicide for those who feel life has become unbearable. Some feel that such people as Mr Crew, who say they have nothing to live for, should be allowed to end their lives without having to go abroad to do so.

I feel a great sadness when a disabled person sees no option other than euthanasia. While I would defend a person's choice to end their own life, I could never accept the dangers that would attend the legalisation of assisted suicide, and if that means that a very small number of people are forced to live against their will, so be it. Providing a regulatory framework for terminally ill patients to end their lives would place many disabled people in mortal danger.

I was a few days old when the seriousness of my disability was discovered. My mother was told to take me home and enjoy me, as I would die within a year. Strange as it may seem I unconsciously sensed the change in the attitude of the people around me, from calm and loving to panicky and hostile. A message slipped into my unconscious saying that people would prefer it if I died. As so often with severe impairments, the doctors were wrong. I was frequently unwell, mostly with serious chest infections, but I am still here. I have spent nearly all my life desperately trying to prove that I should be alive, that I am not suffering, that I am not worthless.

The truth is that our lives are seen as inferior to those of non-disabled people. The Disability Rights Commission, of which I am a commissioner (although these views are my own), has heard from disabled people and their families that decisions on whether or not to offer life-saving treatment are often made in an environment of ignorance and discriminatory attitudes. We live with the negative stereotype that disability equals a state worse than death, an idea reinforced by our collective obsession with the body beautiful.

When the Voluntary Euthanasia Society (VES) talks about people with multiple sclerosis as "incurably ill" or that assisting them to die is a "supreme act of compassion", we see the power of such a malign medical model. We may feel that it is a compassionate act to help someone end a life that is intolerable to them, but there is a danger of assuming the disability (in this case the physical condition brought about by MS) is in itself sufficient to explain the intolerable nature of the life experience.

We disabled people must demand of organisations such as the VES, of the courts and of the general population that they fundamentally question why disabled people may find their life not worth living. To assume that the condition is the answer is to ignore the social, economic and personal context of disability.

What alarmed me about the case of Diane Pretty, who had motor neurone disease and campaigned unsuccessfully to be allowed to die, was the media response. The public could be forgiven for getting the idea that anyone with a substantial level of disability will inevitably be deeply depressed and preoccupied with thoughts of dying. I find this deeply worrying and feel obligated to tell the world that we and many others like us are lucky enough not to be in that unhappy emotional state.

That's not to say things don't need to improve. We are faced with an often shockingly low level of provision by social services and other organisation. Our vigorous campaigning on sometimes outrageous systemic injustices over the years has never been rewarded with more than tepid interest. The message we get is that a pecking order of human rights concerning disability is emerging. The right to assisted suicide, which implies no expense to society and has high human emotional impact, is right at the top of the heap. The right, for example, to go to the loo when needed, which may have some cost implications and packs absolutely no emotional punch whatever is currently seen to be very much the poor relation.

It's strange that while society seems content mentally to consign people such as Mrs Pretty and Mr Crew to the graveyard, no one would dare think the same of Stephen Hawking, the brilliant physicist who is incapacitated with motor neurone disease. Logically, if they are so different that they would be better off dead, then the same should be said of Mr Hawking. Or do we want him to live because of his intelligence?

I believe that acceptance and celebration of our diversity is absolutely necessary for our own emancipation, our feelings of self-worth and safety. I believe that all life is of equal value. If we accept that honestly, then we must put all our energy into making sure our environment and social systems support disabled people's inclusion and life, not our death. The campaign to assist our so-called voluntary death is dangerous and reinforces our unequal status.

This is a hard nettle to grasp, but one I feel to be true. Until we face this deep prejudice, where most people do not believe all life to be of equal value, disabled people will never be seen as equal citizens and people like me will feel unsafe.

The author is a commissioner for the Disability Rights Commission

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