I often say that the world of prenatal testing for Down syndrome is a test run for the future of human procreation, and that it’s a test we are generally failing.
It seems to me that as our access to pre-natal information gets better and better, cheaper and cheaper, more and more accurate, we slide inexorably towards what I call the GATTACA future. The rhetorics, laws and best medical practices we develop around testing for Down syndrome, the first common condition (more or less) detectable non-invasively and early in pregnancy, will shape the way we handle the next wave of advances. Already, individuals with certain genetic risk factors for fatal conditions can get in-vitro fetuses screened before implantation. I am sure that wealthy individuals are also already traveling abroad to create designer babies, a technology that is only accelerating.
Slippery-slope arguments are always tricky, but this slope looks pretty clear to me. In the world of Down syndrome, two technologies are racing each other. One – testing – enables early abortion. The other – medicine intended to improve cognitive function – not only might ameliorate some of the hardships generally associated with Down syndrome, but might also transform societal impression of the disability.
Meanwhile, the pro-life side increasingly radicalizes, turns violent (rhetorically and actually), and successfully restricts access to abortion across the country – and uses Down syndrome as a wedge issue – it becomes harder for a pro-choice voice like me to raise concerns about the way decisions are made.
I believe, without equivocation, that access to abortion should be universal, affordable, protected by law, and solely the choice of the woman. But I also believe that in making such choices we reveal all kinds of underlying principles about what is valued, what is good, and what is normal. In general, disability is perceived as none of these things. I am trying, and mostly flailing about, to develop a pro-choice and anti-eugenic rhetoric.
I am writing this because Katha Pollitt has a new book out called Pro, which I haven’t read yet, and did an interview in the New York Times. She, too, is interested in the rhetorics of abortion and is trying to change the conversation from “safe, legal, and rare” to “safe, legal, and available.” Rare places a moral weight on abortion so that even if it’s legal, that legality is grudging, and there’s an idea that there’s a right amount of abortion. She’s working against the right-wing fanaticism, and good for her.
But then she wrote:
Q: Are there any arguments on the other side of the debate that either give you pause or that you respect on a purely intellectual (if not practical) level?
A: Someone (actually, a pro-choicer at a Planned Parenthood fundraiser) said to me, it’s okay to say you’re not going to have a baby now, but it’s wrong to say you’re not going to have this baby now. I struggle with abortion for, say, Down syndrome. At the same time I ask myself: if Down syndrome could be prevented, that would be a good thing, so why does abortion feel different, since it’s not yet a person? I don’t find the anti-choice perspective intellectually persuasive at all — the personhood of the fertilized egg, sex as a kind of contract to have a baby. But emotionally there is something appealing about accepting life with all its imperfections and difficulties and even sorrow, rising to the occasion and making something good out of it.
The problem is they want to force this view on others, and by others I mean women, because they have no more interest than the culture at large in demanding real sacrifice by men who get women pregnant.
Pollitt and I are roughly on the same page in all but one phrase. She says – there’s something appealing about accepting life in all its forms. I agree. Not just appealing, in fact, but important. If a diverse society is important, if a diverse society is a better society, than neuro-diversity and physical diversity and chromosomal diversity has to be part of that. I suspect Pollitt would agree (we chatted briefly on twitter and I sent her an email at her invitation).
Furthermore, I share Pollitt’s deep anger at the right-wing for trying to force such views on women, especially because too many “pro-life” people also don’t want to pay for better schools, medical access, accessible buildings, integrated work opportunities, and all the other things. Disability is expensive. Pro-life people should demand the state pay for such expenses to the extent necessary.
But I’m not here to talk about the right-wing’s endless hypocrisy, but rather to focus on just this line: “If Down syndrome could be prevented, that would be a good thing.”
Would it be? What does prevented mean?
- Injecting magic stem cells into a fetus with Down syndrome and have the fetus develop without chromosomal abnormalities? (proposed, unlikely)
- Aborting every fetus with Down syndrome? (not happening, but happening plenty)
- Finding a drug combination that works against the general cognitive delays associated with Down syndrome (in clinical trials now)
- Building a more inclusive society to help bear the weight when things get hard, as they do? (depends where and who you are. Pretty good in the suburbs).
What is a cure?
I’m not the first to talk about this. I like Michael Bérubé
on the subject and the “race for the reasonable accommodation.”
I would like my son’s life to be easier. I’d like to have more tools to counter the ways in which Down syndrome makes it hard for him to learn. I’d like to be able to function in public without feeling shame and isolation when Nico’s behavior collapses. These things are, in fact, happening.
On the pro-choice side, we need a new rhetoric. We need to proudly embrace a rhetoric of diversity and disability. Not because it’s glorious to accept hardship and we can make something good out of it, as Pollitt says, but because often our perceptions our flawed. The things we were sure we know about Down syndrome 30 years ago turned out to be wrong.
We think we know what normal is. We think we know what a good life is. We’re often wrong.
This … is a work in progress.