I also don't know completely what to think, here, but it certainly gives me the willies to hear someone so blithely say, "congenital deafness is precisely the sort of condition that gets a would-be donor eliminated."
Eliminated. Now, I realize they mean "eliminated from the pool of donated genes" but even in trying to frame that implicit statement I almost typed "eliminated from the gene pool." To me there is something "final-solutiony" about birth technologies that gives me a great big pause. Deaf people have a culture, a community based on deafness, as I understand it, moreso than blind people, for instance. So the part of me that most sympathises here, says, "these folks value their community and want their child to be a real part of that community."
Here's a writer I value, Nancy Mairs, who has MS and now cannot walk at all, who discuses her discomfort with the way euthanasia and abortion discussions often get framed:
" . . . My purpose in raising questions about abortion and euthansia is not to condemn these procedures, which I believe ought to be freely available, in strict privacy, to any fully informed person who elects them. In fact, I would educate doctors more, and regulate them less, so that they and their patients could explore options, reach decisions, and take action without intrusion. My concern is that these issues be confronted in such a way as to create a social climate in which people with a disability perceive life to be an honorable choice. [Right now, she argues, there's a strong, implicit, but unavoidable message that if abortion is an option for fetuses diagnosed with disease, and death is an "option" for disabled people, the "right" option is to take it. So, to not take that option goes against social norms.] And that means sending a message that disabled people are valued and valuable, precious even, by investing financially and emotionally in institutions and practices that help them out.
Everybody, well or ill, disabled or not, imagines a boundary of suffering and loss beyond which, she is certain, life will no longer be worth living. I know that I do. I also know that my line, far from being scored in stone, has inched across the sands of my life: at various times, I could not possibly do without long walks on the beach or rambles through the woods; use a cane, a brace, a wheel chair; stop teaching; give up driving; let someone else put on and take off my underwear. One at a time, with the encouragement of others, I have taken each of these (highly figurative) steps. Now I believe my limit to lie at George's [her husband's--the one who takes off and puts on her knickers for her] death, but I'm prepared to let it move if it will. When I reach the wall, I think I'll know."
She goes on to say she can't condemn (U.S.) women with MS who sought out Dr. Kervorkian for help dying. But, "If a woman, upon learning that her fetus has spina bifida, may choose abortion, then she ought also to feel free to decide, without apology, to bear and rear the child, certain that she will have the same access to medical care and educational programs that a nondisabled child enjoys." Education designed for her/his needs. Then Mairs reminds us "Alexander Pope and Toulouse-Lautrec were hunchbacks, Milton went blind; Beethoven, deaf, and so on, and so on. . . "
How can we judge that some kinds of lives shouldn't be lived? Deaf people will exist: if we say these women shouldn't have chosen deliberatly to give birth to a deaf child, aren't we implying that ideally, deaf people should not exist at all? Given that technology increasingly can tell us lots of things about unborn children, does that mean that women in the future will be encouraged, if not required, to abort any "imperfect" child? (Or face the consequences of a world that refuses to welcome that child?)
Here's what I think: the choice these women made is not likely to ever be repeated by non-disabled parents, or even many disabled persons. So I think it's more important for those of us who are not CURRENTLY disabled to work to make the world more welcoming to disabled bodies, one of which, in the future, may be our own.
[end sermon]
(sorry to have gotten a little preachy on y'all. alas.) |
