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We still don't know what 'normal' really is Add to ...

Surely, one would think, the eradication of Tay-Sachs would be an unqualified good for the species as a whole, not to mention the stricken parents who have to watch their child succumb to the disease. Surely it makes sense to screen for such things.

But does it make as much sense to screen for Down syndrome? Or for genetic markers that might indicate deafness, or cystic fibrosis, or Parkinson's Disease, or Huntington's, or Alzheimer's? Why should we try to detect relatively mild disabilities in utero -- or degenerative diseases that may not appear for another 50 years?

The debate about prenatal screening has managed, remarkably, to obscure two critical things: We have no idea what we mean when we talk about "screening," and we have no idea what we mean when we think about "unqualified good for the species as a whole." And yet as the technology of prenatal screening improves with each year, we tell ourselves we're getting somewhere. How can that be?

Perhaps it's that we live in a world where an ounce of prevention is rightly considered to be better than a lifetime of symptomatic treatment -- but where the logic of "prevention" is wrongly mapped onto pregnancy and childbirth, so that it perversely seems (to some people) as if it's always better to prevent some lives than to live them.

Or perhaps it's that we don't stop to consider all the things we can't see when we "screen" pregnancies. Things such as cerebral palsy or some forms of autism or schizophrenia or, my favourite term, "pervasive developmental delay" -- a formal way of saying "we have no idea what's going on in there." Some advocates of across-the-board prenatal screening seem to be especially confused about what the technology can and can't do.

Or perhaps it's that we don't yet know how to distinguish disability from disease, ordinary fleshly frailty from relentless predatory illness.

That distinction was driven home to me last year when I taught the first graduate seminar in disability studies at Penn State University. My class was reading essays on the overlap between disability activism and gay/lesbian activism -- an overlap concentrated on, but not exclusive to, the history of AIDS.

One of my students objected to the conflation of AIDS with disability in general. He understood, he said, why disability activists have resisted the idea that disability is something that can be "cured" or "prevented" with technological advances and medical interventions, just as gay and lesbian activists have resisted the idea that homosexuality is a curable disease.

He understood why people with congenital disabilities would recoil from a prenatal screening initiative whose assumptions seem to be that the world would be a better place if they had never been born.

But, he said, if a cure for AIDS were found tomorrow, would he be happy? If HIV could be wiped from the face of the Earth, would he support its eradication? Yes, yes he would. Without hesitation, without a second's misgiving.

The class took a collective breath. For weeks, we'd been reading the work of disability activists who argue, justifiably enough, that contemporary biomedicine frames everything in terms of the miracle cure -- the scientific breakthrough that will allow the lame to walk and the blind to see. We'd read their scathing accounts of eugenics, the early pseudoscience of making better babies.

But in all that reading, we'd never come across a disability activist who calls for the creation of a Smallpox Restoration Society or a Polio Preservation League. The elimination of smallpox and polio (and tuberculosis and cholera and bubonic plague) seems to most people to be an unqualified good for the species. Even in the work of disability activists who would never give a moment's thought to providing all deaf people with cochlear implants, there is a common sense that there are some human conditions we are better off without.

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