I’m still seething over this post at Reproductive Health Reality Check, in which I am essentially informed that my life has so little value, is so not worth living, that I was such a burden on my father to raise, that I should have been aborted. Things like this are why I have problems interacting with the mainstream reproductive rights movement, which seems bent on using us as a tool just as much as the right is. In this piece, in which not a single actual living disabled person appears, the author proceeds to lay out an argument for abortion for disability that has, rightly, gotten the disability community up in arms.
It starts with a very dismissive, snide, flip introduction in which the author effectively says ‘read this or not, I don’t really care, but don’t hate me!’ The key sentence of the introduction tells you a lot about what is to follow: ‘I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people.’
I…disagree.
But let’s take Sierra’s points one by one, because it seems that whenever disabled people react with anger to rhetoric like this, we’re penalised for it. So, Sierra, here we go. Prepare for logic.
Sierra points to an article about prenatal testing, which I happen to agree is great science. We can find out more about a fetus than ever before with the benefit of tests which allow us to make informed choices about the pregnancy. Those choices can include abortion, preparing for birth, taking special precautions, and other measures that are private medical decisions. Inevitably, the fact that it’s possible to test for many common disabilities means that abortion for disability is going to come up as a topic.
This is a fraught ethical subject, and it’s fraught in no small part because of the social devaluation of disability. On the right, people with disabilities are fetishised as tools and instruments to a larger end; conservatives make sweeping statements about ‘respecting life’ when it comes to fetuses who might be born with disabilities, though of course they do nothing to support those fetuses once they’re born. This rhetoric does not allow room for the fundamental humanity of people with disabilities. Meanwhile, the left treats us like we don’t exist and aren’t a part of society, and don’t belong in society, frequently advancing arguments like Sierra’s: that abortion for disability is, quote, ‘a positive moral choice.‘
She says the article fetishises disability. Again, I agree on this point. Like a lot of media, it talks about disability as a ‘gift’ and the author, like Sierra, apparently didn’t feel the need to include the voices of actual disabled people in her piece. Sierra proceeds to give lip service to the disability rights movement, but here’s the moment where she goes off the rails:
‘Respecting the rights of disabled people does not mean honoring or celebrating disability itself.’
An actual recordskip occurred in my house at this moment. Excuse the fuck out of me, but some aspects of the disability rights movement absolutely are about honouring and celebrating disability itself. I’m disabled and proud. I love who I am and I’m not settling for this body and mind, dealing with it because it’s there, overcoming anything, or making the best of a bad deal. I am who I am because of my disabilities, I love who I am, I love my disabilities as part of myself. You’re better damn well bet I’m going to honour and celebrate that, and raise my fists in solidarity with disabled people all over the world who feel the same way.
At the same time, that doesn’t mean all disabled people share that sentiment and experience. And that’s okay, because there’s room in disability rights for everyone. What I am pushing for is disability as a value-neutral status that individual disabled people, not the people around them, get to make of what they will. Maybe that means celebrating your amazing body. Maybe that means corrective surgery. Maybe that means something else entirely.
‘I’d wager most people who are disabled would rather not be.’
Wrong. Maybe instead of speculating about the experience of disability, you should have consulted actual people with disabilities, explored the vibrant and lively disability rights movement, and interacted with the people you’re writing about. I’m assuming you didn’t think to do that because you apparently believe we live lives of unrelenting suffering, and/or we can’t communicate with nondisabled people; or was every potential interview subject too busy to fit you into their schedules between morning misery and afternoon moping?
Sierra says:
I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available? Would they choose to suffer disabilities just so that their parents could have the “reward” and “special gift” of raising them?
Let’s deconstruct this a bit. Again, Sierra is speculating on an experience that is not hers, and she’s making assumptions based on her own view of the world. She ‘doubts’ that we would choose to be disabled. She doesn’t know that. As she herself acknowledges in her own snipey introduction, fetuses aren’t capable of making choices (we’re focusing, for the purpose of this piece, on congenital and genetic disability rather than acquired disability). I can say, from my own experience, that I wouldn’t choose to be any different even if, yes, sometimes my disabilities are frustrating and pose obstacles for me. I can also say, from my own experience, that I have refused some treatments for my disabilities, and so do some other people with disabilities.
In fact, some people forcibly labeled as disabled, like some autistic people and some Deaf/hard of hearing folks, don’t identify as disabled. And they refuse treatment for what they (rightly) see as a natural human variation.
Speaking of fetishising disability, Sierra, I’m not ‘wise’ because I’m disabled. I’m a human being. Disability hasn’t conferred any more or less wisdom. Disability is not ‘suffering,’ and the fact that you use this word clues me in to the fact that you have a very ableist view on the world, for all that you attempt to use language from the disability rights movement to convey your understanding of what it’s like to live with disability. And you’re centring parents here in a rather striking way.
‘Wanting to eradicate a condition that causes suffering or dependence in a population is not the same as wanting that population to die.’
Statements like ‘I want a cure for autism‘ or ‘I want a cure for Down Syndrome’ are eliminationist in nature. These statements indicate that you want an entire population to disappear. And, newsflash, attitudes like these are why parents who torture, abuse, and kill their disabled children are often not held accountable. Because raising a disabled child is such hard work and the extenuating circumstances should surely be considered when evaluating the case.
Sierra and I actually agree on point two; acting like disabled children are some kind of special lesson and growth object is indeed dehumanising and gross. That said, disability doesn’t create inherent suffering. It’s notable that she focuses on only two disabilities, Down syndrome and cystic fibrosis, in this piece. I’d be curious to know which other disabilities she believes fall under the rubric of ‘suffering.’ Individual parents need to make individual choices based on available information about the pregnancy and their lives, something I think Sierra and I can also agree upon, but she’s pushing very hard on the argument that abortion for disability is almost necessary if you want to make the correct ethical choice for a pregnancy.
Simply put, it’s not. It’s not like the idea of aborting for disability is anything new, or that parents don’t get a lot of pressure to jump to abortion rather than more information as soon as a prenatal diagnosis is delivered. Choosing abortion because you don’t have the capacity to care for a child is a reasonable ethical choice, and it’s not the only option, though I’d note that people are not exactly lining up to adopt disabled children, nor are social services rushing to provide support to disabled children and their families. Choosing abortion because you feel no one could offer the child a good quality of life is a value judgment on someone else’s life, but it’s also a personal choice because you’re the one carrying that fetus, which makes it yours to make and no one else’s. Ultimately, the option people feel most comfortable with is a personal decision, and that decision is the most ethical one for a given pregnancy.
Next, she brings up the issue of class, a key component in this discussion, as I’ve actually talked about here in the past. However, Sierra’s approach to it is utterly backward. Rather than saying we need to talk about the lack of social support for people with disabilities, including both the lack of financial resources and the ableism rife in this society, she apparently thinks the solution is to abort disabled children. Because their lives aren’t worth living (see ‘suffering’ above) and their parents can’t afford to give them the quality of life they deserve, the natural solution is not agitation on a larger scale for social change to tear apart the system that forces people to make the decision to abort for economic reasons, but to simply promote abortion as the right moral choice. No one should have to abort a children for economic reasons or for lack of social and community resources, and that is what we should be working towards.
Her next point rehashes some very old, tired, and boring arguments about how caregiving is so hard and won’t someone think of the family. Here’s the thing: Providing care for any child is difficult, and disabled children do present some extra challenges. The problem here, though, is not that children with disabilities are inherently difficult to care for, but that caregivers enjoy absolutely no social support.
Accessing respite care, funding for aides, daycare, and other forms of assistance is virtually impossible, unless you are, yes, very wealthy. We need to be talking about this. We need to be asking why discussions about abortion for disability focus on how awful disability is and how painful it is to have a disabled child, instead of how terrible it is that society can’t be bothered to promote the welfare of disabled people. We need to be asking why arguments like Sierra’s are advanced over and over again, and why people like Sierra don’t examine the deeper social issues going on here.
In her next segment, Sierra makes some striking assumptions about life with disability. She focuses specifically on cystic fibrosis, a condition that actually has variable presentations. And, thanks to medical advances, is much more manageable today than it once was. Does that mean I think people carrying fetuses who test positive should be forced to carry them to term? Absolutely not. But it does mean that I think people making decisions about abortion on the basis of disability need to actually do their homework to find out what they, and their children, might be facing if they decide to continue with the pregnancy.
Finally, she says that the article she references erases parenting, and I agree on that point too. Much anti-choice rhetoric completely elides the bodies of the adult living people who can survive independently who are rather intimately involved in the situation. Ultimately, the pregnant person gets to decide whether to carry a pregnancy to term, for whatever reason. Much as people with disabilities are often talked about and around, pregnant people are often ignored by the right because they are an inconvenience; the right, like the left, doesn’t want to be confronted with the actual people who will be immediately affected by its rhetoric.
I’ve often said that choosing abortion for disability doesn’t mean that you hate disabled people. But when ableist society is contributing to the pressures on you to abort, you need to acknowledge that. I want all children to be born into homes where they are eagerly anticipated and will receive love and support throughout their lives, no matter what their disability status might be. And I want all parents to have all the information they need about their pregnancies to make the best choices for them, and for their children. And I want all parents to have social support so they aren’t forced to make choices on the basis of external pressures like lack of money, lack of access to care, and other issues that can come up when making decisions about a pregnancy.
But I’m not going to sit still for someone telling me that my life is suffering, that my life is not worth living, and that ergo I should have been aborted and people like me should be aborted. I’m on the autism spectrum. There are a lot of people in the world who want to eliminate people like me. I’m not interested in playing the gross anti-choice game of ‘just think who might have been aborted!’ but I would like to point out that because there’s a widespread belief that autism is bad and should be eliminated, living autistic people, as in actual human beings who are around right now, face increased prejudice. That includes hate crimes committed against us, it includes discrimination, it includes abuse by parents and ‘caregivers.’
And that is a problem that articles like this contribute to. I don’t want to be used as a pawn by the right or the left to advance its own agendas about reproductive rights and parenting. Ultimately, parents need to decide what they are equipped for, and I want to provide a world where their choices are supported.
In a world where people, yes, celebrate and honour disability, our lives would be valuable and we would be considered on equal footing as nondisabled people. And in that world, people wouldn’t talk about disability in terms like ‘suffering’ and say that parents have a moral obligation to abort to ‘avoid inflicting suffering.’ They’d say that all parents have the right to make decisions about what happens inside their own bodies, on the basis of as much information as possible, and those decisions are private and not subject to public discussion and judgment.
This should go without saying but I’m saying it anyway: Please don’t bother leaving comments telling me that disability in general is the worst thing ever, that abortion for condition Xyz is morally sound because it’s so awful, that you had a friend once who wished she’d never been born, that progressives aren’t ableist at all and I’m just being unreasonable, that you have a disabled family member who’s just too much work, &c.
29 Comments
I’m wondering what your take is on the thought experiment she posed. Is preventing people from being born with fetal alcohol syndrome different from preventing people from being born with down syndrome?
How about we not reduce the lives of people with disabilities to thought experiments?
One of the problems here is that with abortion rights being under attack, pro-choicers are constantly on the lookout for easy-to-defend ‘exceptions’ that won’t frighten the fence-sitters, instead of insisting on the basic principle that no-one should ever be forced to give birth unless they choose to do so. And the only reason this particular ‘exception’ is easy to defend is that so many people don’t think the lives of disabled PEOPLE are worth anything. Even the pro-lifers who profess to care about potentially-disabled foetuses are nowhere when it comes to caring about actual disabled people.
Also, aborting to ‘avoid inflicting suffering’? Newsflash: all human life involves suffering of one sort or another. The only way anyone can avoid inflicting suffering on a child is not to inflict life upon it.
@1 I consider FAS to be equivalent to a traumatic brain injury, just one done before birth instead of after. Do we want to prevent or cure traumatic brain injuries? Of course, the same as we want to prevent or cure birth defects caused by certain medications or environmental contamination. Should thalidomide be back on the market because recalling it caused birth defects caused by it to disappear?
Disabilities caused by external factors are different than those caused by genetics. My mom is guardian for her foster brother who was born with FAS. Do I wish he hadn’t been born? Of course not. I certainly do wish his mother hadn’t damaged his brain in utero. I wonder all the time what he’d have been like without FAS. Would he be able to do basic math? Read beyond a 2nd grade level? Have gone to college?
I’m borderline Aspergers and have a visual impairment. I honestly don’t consider myself disabled. Would I fix the visual impairment if I could? In a heartbeat (and if I can ever afford it I’ll have lasix to try to improve my vision so I can drive). But would I fix the way my brain works? Not a chance. I don’t even believe it is a disability, but part of the normal spectrum of brain development.
I am curious…does this principle extend to fetuses with conditions that will kill them in short order (Tay-Sachs, for example)?
Again, this is not about thought experiments, Funkula. Nor is it about providing a quick and handy guide to the justified abortion. Abortion is an individual and private choice made by people with as much information as possible about a pregnancy.
Thanks for posting this. There’s a lot to digest in here and I need to read it at a time when I’m better able to absorb this stuff (I OD’d on Akin & related shit today & I am out of cope) but I know this is a really important piece. There’s no information here I don’t *know* but I think there’s a lot I need to *internalise.*
I’m disabled. I don’t see “mainstream” reproductive rights activists as the problem. If antichoice politicians had their way, people would be denied reproductive services. I’m not saying that they are all perfect, but I am still thankful for “mainstream” reproductive rights activists.
Accessing respite care, funding for aides, daycare, and other forms of assistance is virtually impossible, unless you are, yes, very wealthy
This is what makes Sarah Palin’s self-righteous yammering about how, because she chose to carry Trig to term, abortion is never, ever justified.
First, of course, it delves into exactly the kind of ableist attitudes you’re talking about in this post. “I’m so brave and righteous because I was magnanimous enough to carry my baby to term EVEN THOUGH SHE HAS DOWN SYNDROME.” That’s like expecting people to admire you for being friends with a guy “even though he’s black.”
Second, certain things are a lot easier for Sarah Palin. And if I hear one more wealthy white anti-choice couple blathering about how because they had the strength and fortitude to pay for expensive medical care for their complicated pregnancy, nobody should ever abort, I’m going to punch a wall.
Ultimately, it’s like you said. A person can abort their pregnancy for whatever damn reason they want. It’s not my place to offer a moral judgment, whether positive or negative, on a person’s choice to abort unless they specifically ask me to.
@2 You’re totally right. I was thinking you might have a rebuttal to it specifically. I apologize if I offended.
Thank you thank you thank you! The world needs more champions like you.
I love your writing.
One of my brothers has Down’s Syndrome. My sisterly perspective is that his life is complicated by the way other people treat him: he’s often excluded, ignored, teased and underestimated. His community does not provide adequate support. He gets frustrated by people treating him “different” (his word). The article you are responding too makes no room for “suffering” caused by the actions of others, which is astounding given ableism. I support a woman’s right to choose but my brother is not a reason for that choice and it really annoys me when his disability is used in this way. The reason abortion should be an option is because no one with a uterus should have to carry a child if they don’t want to.
Someone brought this post to my attention this morning.
First, I want to thank you for engaging with each of my points so thoroughly. I’d like to respond to a few of them. I’m also willing to continue this conversation if you like, by email or anything else.
First, you’ve identified the weakness of my definition of “disability”. Because I was responding directly to two cases brought up in the Her.meneutics article, I sometimes conflated cystic fibrosis (which I do believe causes suffering) and Down syndrome (which doesn’t necessarily). I agree with the arguments brought up here that autism, Asperger’s, ADHD, depression, etc. aren’t conditions that inevitably undermine one’s ability to live a good life. Indeed, even things that I consider “suffering” still do not invalidate the worth of anyone’s life.
I’m sorry that I gave you the impression that I believed any born person’s life is less worthy of living than another’s based on disability. That is a message I did NOT want to convey, as it’s contrary to what I believe. What I meant to do was point out the hypocrisy of anti-choice activists who accuse women who abort disabled fetuses of being especially heinous eugenicist murderers who hate disabled people.
It was never meant to be a manifesto or a call to abort all disabled fetuses. I should have spent more time emphasizing that.
Sierra, you fell right into the anti-choice trap of demanding that progressives provide justifications for abortion. If the left could stop doing that, maybe it could actually stand a chance of protecting reproductive rights for all.
Every person deserves the right to make a private medical decision without judgment or commentary, period. In the process of falling into the anti-choice trap, you also managed to directly harm, insult, and offend numerous people with disabilities, and I’m sorry, but saying that’s not what you ‘meant’ to do doesn’t really cut it for me. Your piece is rife with ableist attitudes and assumptions, and what you ‘mean’ doesn’t change the fact that you advanced a number of arguments used to marginalise and harm people with disabilities. The fact that you advanced those arguments and apparently didn’t think there’d be a problem with them really tells me all I need to know about what you really meant here.
I wish my condition could be tested for in utero.
I live in constant pain. 150mcg/hr of Fentanyl helps a small amount, but not much. The anti-seizure drugs and tricyclics offer some relief, but the side effects are horrible.
One week a month I’m in inpatient care to flush out my gut, because the painkillers essentially paralyse it, and after a while I start to vomit faeces.
My sight and cognitive function are damaged, I can’t feed myself any more, and my condition is incurable. When the paralysis reaches my chest muscles I’ll suffocate to death.
My ASD can work as an identity, rather than a disability, same goes for my ADHD. However, I’ve seen too many high-functioning people with Deafness, or ASDs, extrapolate their views and politics onto the whole disability movement. My ASD doesn’t need a cure, my neurological disability does.
The social model means nothing to people in my position. All the ramps, social care facilities, and work programs in the world will never alleviate our suffering. I already have free medical care, social welfare programs, cheap medication. That makes me incredibly lucky in comparison to Americans, but it doesn’t ameliorate my suffering in the way that a cure or treatment would.
I wish my problem could be tested for and prevented. I wish I could choose to die with dignity. Sadly, neither is true. I DO want a cure, or even a treatment that isn’t just huge amounts of painkillers. I would love to be the last person on Earth to have this. I’d summon my afflicted friends to back me up, but they’re dying, dead, or entirely cut off from communication with the world. One committed suicide after passing it to her daughter.
Not all disabilities are positive, empowering identities, especially those that are profoundly physically crippling or excruciatingly painful.
This is excellent.
Thank you for this.
S.E. :
Thank you for this very interesting and engaging read. Thank you for pointing out specific issues in the article and critiquing them thoroughly with the right mix of anger and flat reason. Able-bodied people sometimes think they know how to discuss these issues because they have the excellent language of choice that you use above so well; (Abortion is an individual and private choice made by people with as much information as possible about a pregnancy.) but the fact is they should all read this article first.
Proponents of the “it’s compassionate to abort someone with a disability” argument never seem to think, “hey, all these people with disabilities are telling me I’m wrong… Hmmm. Maybe I should pay attention to the people I’m supposedly feeling so much compassion for.”
I am not disabled but I am disfigured. In a region which is predominantly anti-choice, I reframe exclusion as “aborting (us) out of the workforce, out of health care, out of society” etc. They never, ever argue the point. If these people define themselves as pro-life, challenge them to prove their commitment to our lives after our births.
Ambergris, I am reminded of the excellent analysis of the so-called “pro-life” position on Alas A Blog:
http://www.amptoons.com/blog/2011/06/27/do-they-really-believe-abortion-is-murder/
If you try to come up with justifications for termination of pregnancy that pro-lifers will buy, you’ll usually end up compromising in a deeply unpalatable way because many pro-lifers are profoundly disingenous.
This article is awesome. Thank you.
I have a disability, a condition that, in the simplest terms, combines hypermobility and chronic pain. It sucks. I don’t like pain. Taking heart medication for my extra-stretchy heart is also not too fun. Every so often I start thinking “you know, I wish I didn’t have this” and then I realize wait. No. This is part of who I am. I’m a genetic screw-up, and I can say that with a smile. I love who I am, I love that I have relatively obedient hair and decent skin, that’s part of me, so how can I not love something else that’s also part of me? I wouldn’t be the same without this. I wouldn’t have broken my arm, I wouldn’t fail field sobriety tests dead sober because my proprioception wouldn’t be screwy. I wouldn’t appreciate the times when my body does work exactly the way it should, and the beautiful, magical days without pain. I’d be able to have my own children without it being dangerous for me and a coin-toss on their health for them, but I’m studying to be a children’s librarian, to touch hundreds of lives and live on in memories of more kids than most parents ever will. So much is lost on people without disabilities. So many amazing, kind, supportive people I’d never have met.
Hi S.E:
I just want to express my admiration at your patience with dissecting such an awful article full of awful shit. I also want to express my admiration for your relentless fight for human rights. You are brave and inspiring. That is all.
Thank you ever so much for writing this wonderful reply to the original article. I have a disability and I was steaming with anger, when I read the original piece…
I hope this will make its round within the disability rights community and some sh*t will hit fans.
“disability doesn’t create inherent suffering” is a ridiculous statement. My being disabled is nothing like my being a woman, my being queer. If I could get rid of what’s wrong with me then I would. If I could test my pregnancies, I would and I’d abort based on it, and I would encourage other women to do the same. My problems are not entirely caused by society. It’s wrong for Sierra to act like every disability is like mine, and that every disabled person feels like I do, but I don’t think you can so easily dismiss the idea that I and people like me are the majority of disabled people, because I think we are (well, it’s been my experience outside of activist circles). I also don’t think that the extra work, often difficult and/or dangerous physical work, that some parents of people with disabilities have to undertake would be solved with better social care. Somebody still has to do it, and I can’t see it ever being better-paid than it is now. None of this will change if people let go of their ableism, none of this will change if I think of my disability in a positive way.
I absolutely agree that the whole thing is a red herring when it comes to abortion rights. But just as you don’t want to be used as a pawn for the right or the left, I don’t want to be used as a pawn for some kind of pro-disability agenda, either.
Your writing has made me much more informed and intelligent on issues regarding disability and ableism. I loved this piece.
Thank you, Ruth, for your perspective.
“Disability” covers such a wide spectrum of conditions and experiences. Not all disability involves inherent suffering, but some do. I agree people with disabilities are often used for point scoring by the left and the right.
While particular conditions come with challenges and perhaps pain, the attitude our communities have does impact on the lives of people with disability. I speak as someone with relatives with disability and as someone who also has a disability. Attitudes affect: medical care, access to services, access to social life, friendships, relationships, funding services, etc. They are not the only “barriers”, however, and I thank you for reminding us of this fact.
I just saw this article cross-posted at RH Reality Check, and I wanted to come by and say YES. That is all.
Thank you SO MUCH for addressing the original article, and also for not letting Sierra off the hook because she didn’t “mean” to advance ableist arguments. I’m happy that RH Reality Check allowed your post to appear there as well, though I suspect this is an exercise in tokenism. But, be that as it may, this is a very important and valuable article. Thank you for writing it.
I tried to write this same article for my graduate school class in Disability Rhetoric, but you summed it up even better. The problem is with the culture that doesn’t truly value people with disabilities. Women have (or should have) a right to make decisions free of coercion; coercion to abort because of a lack of social understanding and support is just as bad as coercion to not abort (regardless of the health of the fetus).