Friday, November 16, 2007

Disability is not Diversity

Former Post reporter Patricia Bauer is the mother of a child with Down Syndrome, and today she takes to the pages of the Post to attack the notion that a life with Down Syndrome is not worth living:

As a result of recent changes in technology and standards of care, women are undergoing prenatal diagnostics for Down syndrome in unprecedented numbers -- often multiple times during their pregnancies. When the condition is detected, they are having abortions at rates that are thought to approach 90 percent.

Those of us who actually have relationships with people with Down syndrome, and who see them achieving and thriving in their communities, view this paradox as baffling at best, tragic at worst.

We cherish our friends and family members and think their unexpected extra chromosome is not the most important thing about them. And we worry that the relentlessness of genetic testing is amplifying stigma and bias against the 350,000 flesh-and-blood Americans who have the condition, as well as people who have other conditions that are now or soon will be prenatally discoverable.

In recent conversations with obstetricians and gynecologists, I've found that we family members aren't the only ones with these fears. Physicians say they're disturbed by mounting demands from prospective parents for nothing less than the "perfect" child, and by lawyers who troll for lawsuits against doctors who have the misfortune to deliver nonstandard babies. Not long ago, a Florida jury awarded a couple more than $21 million when their doctor failed to detect an obscure genetic condition prenatally.

She then goes on to propose some recommendations for how doctors should deal with couples facing the prospect of having a child with Down syndrome and closes with this sentence:

In the meantime, I'll keep hoping for acceptance of genetic diversity. That would be the best resolution of all.

And that's where she loses me completely. In no way do I believe that the disabled-even those profoundly disabled-do not have a right to life, cannot enjoy life to some satisfactory extent even by a highly subjective measure, or should not be brought into the world by parents who decide to have them. But the idea that we should encourage parents to bring disabled children into the world in the interest of "genetic diversity" is absurd. Disability is not diversity. The idea that disabled people are objectively "defective" (and I use the world in a clinical sense) in some manner, does not at all mean that they are less worthy of life than non-defective people. I understand that throughout human history, there have been societies who thought so: neither the ancient Spartans nor the more modern Nazis thought much of killing the disabled at birth or later. And I understand that even in our society, there are those who-if they don't quite discriminate against the disabled-still regard even only the physically disabled as "lesser" humans than the rest of us. But the antidote to this backwards and uneducated thinking is not to argue that the disabled are only "different" from the rest of us and that we should actively encourage disability in the name of diversity.

For one, there's absolutely nothing wrong with parents terminating a pregnancy that will result in a disabled child. A disabled child is without question a child that will be more burdensome to the parents. That some parents choose willingly to accept this burden in exchange for what they see to be offsetting benefits, does not mean that all parents should feel obligated to so choose. While some may lament the loss of a potential person whose life would still have been meaningful and fulfilling, the fact remains that such loss will be replaced with the potential for another person whose life will be meaningful and fulfilling, only without disability, and that potential is lost when parents elect to have a disabled child.

Second, from the idea that more disabled people equates to greater diversity flows naturally the conclusion that there should be more disability in the world than there is as present, and that people should actively seek to produce disabled children. This is not just a slippery slope argument, as is demonstrated by the deaf couple that utilized in vitro fertilization to deliberately produce deaf children. They felt justified in doing so because they feel strongly that they have an obligation to preserve "deaf culture" by having deaf children.

Such an idea is reprehensible. That people who are born with certain disabilities share a community and fellowship with other people in similar circumstances is no surprise, nor should it be discouraged. But the idea that deafness is a "culture" that should be preserved by producing deliberately disabled children is ridiculous; by whatever measure, a deaf child experiences less of life than a child whose hearing is normal. That a child who is naturally born deaf can experience life just as richly in other ways does not mean that a child should be created who is required to overcome deafness.

For thousands of years men and women have had no choice but to endure the accidents of nature that produced disabled children, with little hope of treating the most disabled, let alone any hope of understanding what produced the disabilities and how such a process could be circumvented. But thanks to decades of medical science and advances in the understanding of genetics we stand on the threshold of a world in which disability can be relegated to history, where everyone has the chance to born fully capable of exercising all human faculties, senses and abilities. It would be grossly irresponsible and harmful to our future children to let this idea of disability as diversity stand in the way of that world.


Nat-Wu said...

It's hard to make that argument without being accused of advocating eugenics and euthanasia. But I agree, people shouldn't seek to have disable children nor should they feel obligated to have them. Of course, perhaps some people just aren't as comfortable with the idea of abortion so you can start over again. But perhaps her argument really arises from a need to see her child's life validated, and she doesn't understand that it is valid whether or not anyone else ever chooses to have a disabled child.

Alexander Wolfe said...

But perhaps her argument really arises from a need to see her child's life validated, and she doesn't understand that it is valid whether or not anyone else ever chooses to have a disabled child.

I think that's exactly it for a large number of people who feel this way, but I don't want to be paternalistic and demean the argument as an entirely emotional one. I'm sure there are quite a few people who have no emotional stake in a person's disability who feel the same way.