Note: I originally submitted this to the editors at slate.com as a rebuttal to Rapp’s original article, which can be found here. The editors never got back to me, and I have been itching to publish this for quite a long time, because I think I did a rather good job of writing it. So I am publishing it here.
I have always been pro-choice, ever since I was old enough to understand what that meant. When I was a teenager, I engaged in passionate debates with high school classmates about the importance of bodily autonomy and personal choice, what it meant to have control over your health. As a disabled woman, I had an intimate understanding of that importance; when I was a young child, it became obvious that I was ‘different’, though it wouldn’t be until age fourteen that the difference was articulated by a name: “autism”.
Precisely because of this difference, my body, my privacy, and my choices weren’t always respected. People didn’t appreciate the fact that I had the right, or even the ability, to say “yes”, so they didn’t respect my “no”. I didn’t fully appreciate the connection between being disabled and pro-choice until I came to university and discovered my voice as a disability rights advocate and as a volunteer for organizations like NARAL Pro-Choice Montana. Pro-choice advocacy gave me the vocabulary and the logic I needed to articulate why it was wrong to restrain, shock, and isolate disabled children under the guise of therapy or discipline, why stories like the Ashley X case and the UK man banned from having sex by a judge upset me so greatly, and why I considered it important to always put community living over institutionalization. Being pro-choice goes beyond issues of reproductive health, it is a philosophy I treasure which recognizes the dignity inherent in each person and their right to declare their freedom and distinguish their bodies as being theirs to do with as they see fit.
That is why, when I read Emily Rapp’s article responding to the anti-choice philosophies of Rick Santorum, I felt compelled to respond, as a pro-choice disability advocate. I want to talk a little bit about how pro-choice philosophies relate to the way we regard and treat disabled individuals. In her article, Rapp discusses her difficulties in raising her son, Rowan, who has Tay-Sachs disease, a condition which, in Rowan’s case, will lead to premature death, and talks about her difficulties raising him, to compel those like Santorum who are opposed to prenatal testing, to reconsider their opposition. I don’t disagree with Rapp about Santorum’s attitude towards people’s ability to make decisions about whether to carry a pregnancy to term being regressive. Nor do I challenge her opinion about access to information provided by prenatal testing, and an individual’s right to decide about what to do with that information.
In fact, that argument is very familiar to me because, a few months ago, when news broke in my country of residence, Canada, that sex-selective abortions were occurring, and there were calls to withhold information about the foetus’ sex from parents to prevent them from aborting if the foetus was female, I was making the same argument as Rapp. The idea of withholding medical information from a patient because you didn’t agree with the choice they might make with said information struck me as a preposterous violation of the rights of the patient, advocating for doctors to essentially lie by omission to them. It was one of the most egregiously callous and paternalistic ideas I’d ever heard suggested for dealing with a societal problem, which is quite a feat.
What was one of the most problematic elements was that it missed the larger problem of devaluing women and girls, seeing them as lesser, or a burden, compared to boys and men. Instead of asking some profound questions about how sexism can influence these decisions, and what can be done to address and eventually heal sexism from Canadian society, advocates for restricting parental information and abortion went directly for the last link in the chain, which doesn’t solve the larger problem.
To me, the same situation applies to prenatal screening for disabilities. I have to admit, a shiver runs up my spine whenever I read an article which promises an eventual prenatal test for detecting autism. I also recognize that we live in a profoundly ableist society, one where disabled lives are regularly devalued and treated as tragedies, considered to be nothing but slow, drudging treks towards the cemetery, where death will be welcomed as a certain sweet respite. Whenever I hear someone framing a disabled life in this fashion, I’m always reminded of a poster for Not Dead Yet, an advocacy organization for people with disabilities, hanging in my old office, which read, “People with disabilities don’t want your pity, or your lethal ‘mercy’. We want freedom, we want life, we’re not dead yet.”
Rapp says that she loves her son, Rowan, and that her love of Rowan would compel her to abort him if she had known about his condition while he was in-utero. She speaks of his difficulties that result from Tay-Sachs disease, and says that she wishes he’d never been born, because, “ no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure.” The problem with Rapp’s logic here is that she is offering up her own, personal situation and Rowan’s, not just as proof that Santorum is wrong-headed in his targeting of prenatal testing, but that life with a disability is a short, mean, insufferable existence, with no light at the end of the tunnel save for death. Rapp’s personal situation translates to one of the pieces in the mosaic of a society where ableism is not only widespread, it’s acceptable. When a disability is seen as tragedy, as a burden upon parents and caretakers, it becomes easier to justify why a disability is undesirable and should be dealt with through cures and selective abortions.
That is the tragedy of an ableist society; there are many parents-to-be who see the results for these tests and decide that a disabled child’s life will inevitably be one of pain, hardship and misery, and decide to abort. But unlike Santorum, I will never attempt to use this information to trash prenatal testing or abortion, or try to criminalize either, or use it as a wedge to divide disability advocates and pro-choice advocates. The ableism in society is my motivation to work towards a future where disability isn’t seen as a death sentence, a stolen life, or a life not worth living at all. To reach this, I don’t intend to go after prenatal testing or abortion, my work as a self-advocate and my pro-choice views guide me instead towards education, neurodiversity, and advocacy towards a more accessible society through better funding for disability services and changed attitudes.
With all this in mind, I don’t think it’s necessary to bring up the issue of disabled children’s quality of life to explain to Rick Santorum how wrong he is when he lambasts prenatal testing or abortion. Rapp challenges Santorum, declaring to him, “…I would like you to meet my child. You should see how beautiful he is; you should see how he suffers, how his parents suffer”, in order to understand why his attitude towards abortion is so overwhelmingly wrong. But I don’t believe it would change his mind. I doubt anything would sway Santorum away from anti-choice rhetoric and the votes they bring in. There are, however, far better ways we can have the conversation around choice, disability, and reproductive rights, without framing it in terms of suffering, pain, or quality of life for disabled children.