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Disability charities aim to promote and raise money for their causes. One example of this is the famous Multiple Sclerosis Society advertising campaign that involved beautiful bodies having bits torn off them to represent the effects of multiple sclerosis (MS). Campaigns like these induce guilt and fear around disability, and by setting us apart as needy and pathetic they create a barrier to integration.
What disabled people actually need is to be able to get on with their lives without having their confidence eroded by this message that their 'faulty' bodies must be dealt with and that their lives are hopeless. An impression which is also tirelessly conveyed by the media - TV and papers - who are always happy to fill a slow news day with the latest about miracle drugs.
I am not saying that it is a good thing to have MS, but disabling conditions are a fact of life and people with these conditions need to be accommodated, with appropriate support and access to the environment, to live in the same way as people without these conditions. This process of accommodation is less likely to happen while society believes that all impairments can and should be cured.
Spina bifida and Down's syndrome can both be screened during pregnancy, so these are decreasing, because of abortion. Decide for yourself whether you think this is a good or bad thing - many disabled people are very angry that disabled people are being eradicated in this way. Certainly, as one of the fruits of medical research, it has no positive impact on the day to day lives of disabled people. It is worth remembering that medical research does from time to time actually cause impairments, most famously the Thalidomide drug, which created a number of people with impaired limbs and organs.
It is broadly true to say that most disabled people get absolutely no benefit from, and have no relationship with, the work of medical researchers. We have no sense that there are or will be cures, even on the most distant of horizons. More importantly, though, we are not particularly concerned, as many of us do not find the state of our body a major pre-occupation. Test this out for yourself by asking a disabled friend or family member (not an ill friend or family member) whether they ever think about being cured or whether they have any expectation of being cured.
Their responses may help you to understand why many disabled people question the validity of research done in our name. Not only does it create an illusion that we can be redesigned, which hinders our integration into society, it is also using resources that could be used to make the world accessible and to pay for support. Bear this in mind the next time someone waggles a collecting tin under your nose.
Sian Vasey is Director of the Ealing Centre for Independent Living. Image: Alison Lapper Artist
The views and opinions expressed by writers herein do not necessarily reflect those of the Wellcome Trust.
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