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16 February 2007

Why I Don’t Want to be Cured

Tempted to wave the magic wand and cure my disability? Well, maybe for a day.

By James Medhurst

Among the things that non-disabled people find the most difficult to understand are those campaigners who say that they do not want to be cured of their impairments. If anything, this claim is hardest to stomach for people on the political left, wedded as they often are to notions of public healthcare, scientific progress and psychological malleability.

We are often accused of being in denial. Surely, we are asked, if someone could wave a magic wand and all physical or mental quirks could be excised, anyone would be foolish not to take the opportunity. It is true that there are certainly days when I feel like that, but these are my bad days, when I would not regard myself as making my best decisions. The rest of the time, I accept who I am, because I have self-respect and, anyway, I have no choice.

This is the fundamental problem with the ‘magic wand’ approach. It creates a possibility that does not exist and is therefore rather meaningless, rather like wondering whether you would want to live for ever. Unfortunately, unlike in the search for eternal life, when it comes to ridding the world of disability, there is rather less scepticism about finding the philosopher’s stone.

In most cases, there is and is never likely to be a magic wand, a cure that is cheap, free of risk and, most importantly, genuinely works. In the case of autism, which is my impairment, there is not a single treatment that has withstood the rigours of scientific scrutiny and yet the quacks continue to peddle their wares, selling false hopes at the expense of self-acceptance. All doubt fades, so desperate are people for us to be gone.

Even when so-called ‘cures’ exist, they can be partial in their effects, resulting in highly ambivalent consequences. For example, cochlear implants do not allow profoundly deaf people to hear perfectly or to speak like everyone else. As a result, many who choose this option feel no less isolated from the hearing world than previously and yet may create distance between themselves and other deaf people, who use less integrationist solutions such as sign language.

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Similarly, those who are treated for facial disfigurements rarely end up looking like Joe Average but rather like people who have had bad plastic surgery, perhaps not surprisingly because that is often exactly the case. Of course, there is always a small risk of death or serious injury in any such surgery but, in the case of conjoined twins, an operation to separate them can frequently be fatal. Nevertheless, this fact does not prevent commentators from assuming that it must always be the necessary approach.

For the last century and a half, a central feature of the history of medicine has been its unremitting optimism about its ability to solve social problems, buoyed by the undoubted success of the germ theory of disease. However, no recent innovation can compare with the elimination of smallpox and the relative control of cholera and tuberculosis. Indeed, the greatest discoveries, such as the role of insulin in diabetes, have allowed people with impairments to live longer, when before they would have perished.

Medicine, whether with stem cells, genetic engineering, or psychotherapy, is not going to make us go away and is a distraction from the vital task of finding social and political solutions, based upon rights and access to jobs and services. But if there really was a magic wand, I know what I would do. I would cure myself for one day, just to see what it was like to be normal, knowing that I could use the same magic wand to return myself to the real me afterwards.

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