Genetics and Disability

Institute of Ideas Genes and Society Festival, Battersea Arts Centre, London

‘Does the aspiration to eliminate disability through genetic technology necessarily denigrate the disabled as people?’

Duleep Allirajah, disability policy analyst, explained to the uninitiated how, contrary to the medical model, campaigners insist that people are ‘disabled by society not their bodies’. To this end, remedies (rather than treatments or cures) are sought at the level of policy, adapting the built-environment or workplace, and lobbying for anti-discrimination measures.

Josephine Quintavalle, who’s founder of Comment on Reproductive Ethics and is sympathetic to the social model, suggested that society makes value-judgements, which send out the message that ‘we don’t like disability and we’d like to get rid of it’. Looking at how prospective parents are dealt with, Quintaville spoke of the bias in the health system, in that it fails to provide balanced information on the choices available. Her main criticism was that rather than explaining the prognosis and implications for bringing up a disabled child, the health system presumes abortion would be the likeliest option.

Quintavalle clearly believes that the pro-cure camp is eugenicist; she refused to entertain the notion that a woman’s choice to abort is qualitatively different to enforced sterilisation. Rather she stressed that women’s rights with regards to their own bodies are being eroded.

On the contrary, argued a member of the audience, doctors want to eliminate disease and most women want a healthy child; for Allirajah, the impositions of health professionals and counsellors were more likely to compromise parents’ decisions. And anyway, people are more than capable of distinguishing between the decision over whether or not to raise a child with a disability, and the dignity afforded to disabled people. He was critical of the failure of the likes of Quintavalle to do the same. Ironically, he argued, rather than ‘seeing the person behind the disability’, campaigners regard advances in biotechnology as an ‘attack on their very essence’. Surely, this amounts to identification with the disability, to the detriment of the individual. As Allirajah noted, ‘pain, fatigue [and] incontinence’ are not the kind of experiences anyone should want to celebrate.

As if to reinforce this impression, Quintavalle expressed concern that, despite the poor success rate of pre-implantation genetic diagnosis (PGD), sooner or later the technique would be refined. This was not only discriminatory (part of a ‘search and kill’ mindset), but encouraged the notion of the child as commodity. Quintavalle questioned how it is possible on the one hand to be accepting of surplus embryos, and yet on the other, say ‘if I want it, it’s very precious’. This, as a contributor from the floor noted, demonstrated the ‘pro-life’ strand to Quintavalle’s argument.

One audience member pointed out that the debate was only of significance to a small minority of the disabled population anyway. Allirajah agreed, adding that disability is predominantly associated with the ageing process. Ironically, argued another, the young disabled are often more independent than their able-bodied ‘stay at home’ counterparts. The fact that they are no longer incarcerated in long-stay hospitals, as Allirajah put it, and that they have a much greater prominence in public life now, was evidence enough of their much improved position in society.

The attempt by some campaigners to define people with disabilities as a distinct cultural group is mistaken. The arguments presented by Quintavalle are not only demeaning for the disabled, but for society as a whole, reducing what it means to be human, and closing off the potential to overcome the kinds of debilitating conditions they endure.

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