For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.
Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?
Have you ever participated in the cultural narratives that say:
- Older women should not have children because their children are more likely to have a disability
- Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
- Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
- Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
- Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
- It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
- Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
- Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
- Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
- Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
- To violate those cultural ideas means that you are inherently flawed
- The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all
You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.
But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.
This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.
The rest of us can “choose” to stop existing.
Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?
And you expect me to think you’re any better for my rights and needs than pro-lifers, why?
(Cross-posted at three rivers fog.)
Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.
I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.
Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?
I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.
Excellent post. It really explains my discomfort with the mainstream pro-choice movement very well. I won’t be holding my breath on mainstream feminists adopting this framework anytime soon.
Let’s see – I can see at least three “snap” moments:
* Older women should not have children because their children are more likely to have a disability (I use this one as my default explanation for why I’m remaining childfree these days – it’s easier than going into long-winded explanations of why I make the choices I do).
* Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health. (For me it’s not so much that I’m worried a child of mine would wind up with my particular mental illness – I’m more worried that they wouldn’t, but would learn how to be depressive from living with me.)
* Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child. (This one is a bit of a tangle for me because my roots for the decision are based in my own experiences as a child of two depressed parents. Basically, I don’t think I’d be a good parent because depression is such a very self-centred condition – when I’m depressed, I can’t move past the depression to deal with anything. I’m selfish enough to start with – the depression just makes it worse. I don’t think any child needs that.)
That said, my decision to remain child-free is one which I made in concert with my partner (he doesn’t want kids either) and one he agrees with for his own reasons. We tend to avoid the rather low-key and convoluted abortion debate here in Australia by avoiding activities which would result in conception in the first place. But that is MY choice, and I don’t advocate it for anyone else. If there’s someone else out there in my situation who wants to have a family of eleven kids, more power to them. If they only want two kids, again, fine by me. While my decisions regarding not starting a family, and not getting married, have their places in the wider political spectrum, at heart they’re made because they’re things I feel comfortable with, in my selfish life and selfish, black-hearted way. My actions may be data points along the disability activism and feminism spectra – but my reasons are my own.
It took me three attempts at reading this to make it sink in (fibro fog) but yes, everything you said. The ‘one-size-fits-all’ approach to ‘pro-choice’ riles me a lot. It makes a lot of assumptions about the women it is supposed to serve, and often that ‘size’ doesn’t fit disabled women.
This is a great post.
I have been examining my own participation in these tropes since I read ‘Defiant Birth’ (Melinda Tankard Reist) over a year ago. Honestly, that book blew my mind and left me really seriously thinking about my previous conception of ‘Choice’ as well. And the other thing that did it was motherhood. My child does not (right now) have a disability but even so, having her around has made me do some soul-searching. Because, like all of us, one day she could be a disabled person. So it’s made me take the leap from spouting the typical ‘so long as she’s healthy…’ to thinking about what that actually means, and what that means to other people.
Already I am getting replies of two sorts that I really hoped to avoid:
1. It’s OK to shame or discourage (certain) women from having (certain) children as long as they are my ideological opponents. It serves the cause!
I don’t think I need to explain why this is not an appropriate response to this post. Policing who is allowed to parent and who is allowed to exist is never acceptable. Never.
2. I, a disabled woman, don’t want to have children because (fill in the blank).
Everyone’s personal reasons are their personal reasons. But I always feel a bit uncomfortable during discussions among disabled women about their reasons for remaining childless… it feels rather like fat acceptance folks engaging in diet talk or negative body talk.
That’s not to say it’s bad to feel the way you feel. Your reasons are your own, and you have a right to them. But I feel like a lot of us are discouraged from having children because of ableism, external and internalized. We have been soaked in this culture that tells us we are bad people, bad family members, bad intimate partners, and of course we’d be bad parents, of course we’d be depriving children of the life they deserve or their life would be deficient somehow or etc. We also live in a culture that offers little to no support for disabled people to live on their own, much less support anyone else, deprives us of information and resources and opportunity, and then blames us when we fall.
Of course a lot of us aren’t going to want to have kids, in that sort of climate.
And I know we all have our own personal reasons, and they are not wholly explained by the above. I understand that. At the same time, I do strongly believe that the above is at least part of it, and the commiserating over our presumed inability to bear or rear children is just painful for me to listen to, much as diet talk is painful to listen to. And I don’t want this thread to turn into a discussion of why so many of us feel like we have to remain childless, some because we honestly don’t want kids and some because we feel like we can’t. Instead, I want to explore all the reasons why we feel like we can’t.
Because it’s not that we are somehow uniquely unsuited for this role. And I find it telling that so many of us feel like we, individually, are unsuited for this role, and we add up to a great proportion of disabled women who are all coincidentally uniquely unsuited for parenting.
I don’t think we are.
I’m not a woman.
I don’t want to have children. I am completely unable to know if this is because I just don’t want them, or because I think autism means I’d be a bad dad, or because I think my genetic heritage would be less than desirable to pass on. It’s kind of anxiety-generating to try to unravel that.
I am pretty clear that I feel freaked out by research directed towards prenatal testing for autism, obviously directed towards aborting fetuses that might grow into people like me. I was horrified when I learned how many fetuses that might grow into people with Down’s Syndrome are aborted simply because people don’t want children with Down’s Syndrome. And (uh-oh, here it is with the hierarchy) I was completely blown away to discover that prenatal tests for Dwarfism are used to target pregnancies for eugenic abortion.
I remain pro-choice. I get really unhinged about those who want to restrict access to abortions but make exceptions in the case of a prenatal test determining likelihood of birth defects, and this attitude seemed to be frighteningly common.
Heh, I’m another women who had chronic depression all her life (from childhood) and … would be much worse if she didn’t have children. Because having – or rather, raising – children is *the thing I’ve always wanted*, so depriving my selfish depressive self of that would be really unhealthy. Sure, it means taking extra care to manage my condition, but not as much as if I was doing almost anything else.
Reasons against, reasons for, same reasons. Heh.
Excellent post, Amandaw. I guess it was stuff I knew rationally, but I’ve been looking over some of my older posts on more or less this issue and did a mental review of all the times I’ve been in one of those awful debates where someone is trying to convince me that surely I wouldn’t really want to be a disabled mum of a disabled baby…And I realised that as much as I’ve known it rationally and more or less argued it rationally, I’m not sure how much I’ve completely known it. So this was a good “click” moment for me. Thank you.
–IP
I love kids. Always wanted them.
And then my depression started. And my cousing was diagnosed with schizophrenia after a severe break. And I spent time around my aunt during one of her really bad phases.
Add my mom’s depression and the fact that my gran also had periods of severe depression.
I was suddenly convinced that my family had far to many “bad genes”. I thought that it would be unfair, if not downright wrong of me to have chaild, knowing that I might be passing on those tendencies. Because I hated my depression, and I would never want to “make” someone else go through them.
Then I came here. And read some really great posts. And realized that, if I absolutely believe in reproductive freedom for all woman, and I do, than denying myself that freedom was definitely not ok.
I might not like the thought of “giving” a child my depression, but it would be better for someone to have a life, and have depression be part of that live, than for them not to have a life at all. And really, if I shouldn’t have children, then others with a similar background (like my mom!) shouldnt either. And that is not a statement I would ever agree with. So if I don’t want others’ reproductive rights to be taken away, then I can not in good concience take away my own because of the same stupid prejudices.
I am still not sure if I want to have children. But these doubts stem from whether or not I feel like it would be a good choice for my life, not whether there is something inherent to me that means I shouldnt have them.
So, thanks for helping me get over that particular bit of internalized prejudice.
Thank you for this!
I don’t feel like I’m unsuited to be a mother. In fact, I think I’d be a pretty awesome Mom. (As would my partner.) And I think part of the reason I feel that way is because of my disability. I’ve become far more patient and understanding since I got sick.
However — I’m not sure I’ll have a child or not, because I worry about being able to actually care for a child once she’s here. I have limited energy and children require a lot of energy. I worry about working full-time and trying to raise a child. I worry about cheating my child.
And then I think — that’s just stupid. Children are adaptable. They want their parents love and attention. Other family or friends can run around with them if I can’t. They’re not going to miss anything fundamental because I happen to have a disability.
Things that would help? Affordable child care. Knowing that I could take my child somewhere s/he could interact with other children and burn off that energy — that I could afford! A support system of other parents with disabilities! People who understand the difficulties I have, who wouldn’t judge me if I had to pull out of something at the last minute.
I’m pro-choice. But I find the idea that someone would get an abortion just because of a possible disability is frightening. Education about disability, showing people with disabilities leading full lives just like everybody else is the best way I know to combat ableism. However, I do have to trust women, both women who choose to have an abortion in that situation and those who don’t. I have to trust that each woman, disabled or temporarily able-bodied will know what her limits are and will make the right choice for her pregnancy. I have to trust women. Because really, who else can I trust to make that choice?
KJ
Added a note to the post re: comment moderation. I have had to delete several comments already and I’m not keen on letting things through just because people stated offensive and harmful ideas nicely. If you are temporarily abled, please consider your words carefully before you add to the conversation here. And everyone, please think about what this post means. Hint: It is not “disabled parenting/parenting a child with a disability is clearly wrong, but we’ll allow wrong choices!” If that is what you got out of this post, you have a LOT of listening and learning yet to do.
I don’t have anything to contribute to the discussion, but I want to say thank you to amandaw for laying all of this out and really causing me to examine some of my attitudes about (not) having children. And also for saying this–
But I feel like a lot of us are discouraged from having children because of ableism, external and internalized.
–because I think I still have a lot of internalized ableism when it comes to my particular disability, chronic mental illness, that I think is symptomatic of the illness itself. (i.e. I have a friend with severe anxiety issues, and I don’t judge her, but I do judge myself–especially in the context of thinking about whether I want kids.) So thank you, amandaw, for this food for thought!
I think one of the major reasons that some currently abled women react so negatively to the idea of having a disabled child is because, in our society, women and ESPECIALLY mothers are expected to be caretakers by default, and often end up sacrificing a fair amount of their personal lives in order to care for others. So, a woman faced with the prospect of having to care for a child beyond the “normal” amount freaks out without necessarily being able to articulate what she’s feeling.
Note that all of this could easily be fixed by better social services/community support all around, so that mothers aren’t expected to do everything. Grr.
I had my first child, a contraceptive failure (and the availability of safe legal abortion turned an unplanned pregnancy into a wanted child) while I was temporarily able-bodied. I knew there were diseases my partner and I carried, but I was optimistic enough to have my child. I do think that having children is an incredibly optimistic thing to do: it shows belief that this world will not be destroyed this generation.
By the time I had my second child, seven years later, I was already having symptoms of my disability, but I was still optimistic. So far, neither of my kids shows signs of my disability, but both of them have versions of their father’s bipolar disease. In them, I see the positive aspects of bipolar disease: the creativity and energy that is one side of this disease. They are contributors to this world (and would be worthwhile even if they weren’t), and have become parents themselves, to lovely children who are temporarily-abled.
My disability makes me the grandma who reads to the kids, not the one who plays on the floor. I figure playing on the floor is why parents of young children are so much younger than the grandparents–or why one would recruit extended family or hired help. One grandson sees people on motorized chairs like mine and figures they’re all friendly grandparents who will give him a ride. My daughter automatically scans her surroundings for curb cuts, although she doesn’t need them.
I am much more understanding of people’s needs to take care of themselves emotionally and physically due to seeing what my family (and I) have gone through. But I won’t accept anyone’s saying that any of us doesn’t have the right to exist or to reproduce.
I’ll admit to a lot of conflicting feeling on these sorts of issues. But it’s that conflict that forces me towards being pro-choice–choice meaning more than just abortion, but all things relating to reproductive rights. I’m not going to pretend I know what the ‘best’ option is, because examining my own thoughts I clearly don’t.
The only thing I am sure of is that we’re all human, and that’s enough reason for me to respect, support, and trust the decisions that others make. It’s no less than I would ask for myself.
Many years ago, in a feminist apa (think paper/postal service mailing list or board), the concept of prenatal testing came up, and one potential issue mentioned was deafness or hearing impairment. I suggested that if someone was carrying a wanted child, and such a test could be done without risk, it would be worth doing, because four or five months advance knowledge that a child would be hearing impaired would be useful. It would be time for a parent-to-be to start learning ASL, or to hire a childcare person who knew ASL.
Nobody else had even thought of that: the statements were either that they’d get tested because they wouldn’t want to bear a disabled child, or they wouldn’t get tested either because they knew they wouldn’t abort, or because amniocentesis carried a risk of spontaneous abortion. Nobody said “That’s weird, Vicki,” and at least one person agreed that it made sense, but they just hadn’t thought of it: that in the same way that you would want to make sure you had room for the baby to sleep, and child-proofed electrical outlets, it would be worth knowing if your child would need a caretaker who could sign.
I’m pro-choice, and to answer the question in the title of the post, yes I do trust women to make the decisions that are right for them. I do not believe that disabled women would make bad parents simply because they are disabled or that children with disabilities are inferior to health ones. And I am no more comfortable encouraging disabled women, older women, or anyone who is pregnant with a disabled child to abort than I am with coercing any woman to give birth against her will.
That said, I do not believe that the pro-choice position is, in itself, a failure in regard in disabilities. It simply asserts that a woman has a right to control her reproduction. Does this mean that ableism doesn’t play a part in those decisions? Of course not. The narrative that only TAB women carrying healthy fetuses should follow through with pregnancy is pervasive and absolutely needs to be fought. But if we say that the pro-choice position is problematic because it allows some women to abort for reasons we consider wrong, then we are no different than the pro-lifers who police women’s reproductive decisions (i.e. abortion is only ok in cases of rape or incest). We would just be using different criteria to decide *for* women when they should or shouldn’t be allowed to terminate.
Thanks for the straw-feminist, Lee. Note that I specified “the choice framework” not “being pro-choice.” What rhetoric and ideology becomes mainstream feminist wisdom is very heavily affected by many feminists’ privilege over others (ability/access, race/nationality/cultural background, class, age, geographical location).
Also, where is anyone showing pressure on women to have children they don’t want?
“No different than pro-lifers”? Are you shitting me? For pointing out that people in a position of privilege over us are bettering their disadvantaged position in society by reinforcing the system of privilege that oppresses us? That’s “deciding for women”?
Why is it that every. fucking. time a disabled person points out the problematic parts of the feminist “choice” framework, people fall over themselves to cry “Why do you want to BAN ABORTION [in all circumstances or any individual circumstance]?” Why do people fall over each other to make this about preventing women from making the choices that work best for them, when disabled people are merely proposing that the problem is the stigmatization of parenting-with-disability and the lack of resources for parents (with disabilities) of children (with disabilities)? Why is it that people immediately jump to the straw-feminist of “BAN BAN BAN”? Do you think maybe, just maybe, it might be a defensive reaction to a challenge of privilege? And perhaps just a little attempt to shut down our conversation altogether?
Hooray, yes! There are lots of aspects of women’s lives that the current overriding “choice” framework doesn’t fit. Basically yes it boils down to most people being discomfited by women having absolute bodily integrity and absolute autonomy. Most of us think we’re hip cool and groovy for being “pro-choice” but so often if you scratch the surface the same tired and hackneyed misogyny sits underneath the facade. I’m pleased to have yet another point to add to my own critique of the choice trope, so thank you.
Vicki — There’s where I run into trouble. I want to say, “Hey, you decided you want a baby. You don’t get to decide that you don’t want it because it’s liable to grow to be the wrong person. No prenatal testing.” But there are so many things where prenatal testing can help parents prepare, get necessary support, or allow physicians to be ready with life-saving stuff at the birth.
Why do people fall over each other to make this about preventing women from making the choices that work best for them, when disabled people are merely proposing that the problem is the stigmatization of parenting-with-disability and the lack of resources for parents (with disabilities) of children (with disabilities)?
Thank you, Amandaw. For making this thread, and for pointing that out. I am honestly afraid to talk (write) about this because I never seem to be able to communicate that I’m not challenging the right of a woman to choose if she wants to carry a pregnancy, but the right of, well, everybody, to decide that disabled lives aren’t worth living and that it’d be kindest to insure that we were never born.
When I see these sorts of discussions, I find myself thinking that we really need to work to make choice…well, a fair choice.
To de-stigmatize disability in mother or child
To support women who want their child but need financial or social assistance
To make adoption easier for people who want to go that route
Because right now, while we call it a choice, it’s definitely weighted towards AB, white, upperclass women keeping their babies and other women feeling societal pressure not to. And that’s a problem.
My sister has really struggled as a parent, but we’ve been lucky in that my family has been able to step in and support. Depending on my health, it’s possible that in a few years my boyfriend and I may adopt my nephew. (I, as it happens, love children but can’t stand babies, and add to that the fact that it could be dangerous for me to carry a child…and, well, I’m happy to be a doting aunt and perhaps someday adoptive parent)
~Kali
http://www.brilliantmindbrokenbody.wordpress.com
@Ergo [http://disabledfeminists.com/2010/01/22/do-you-really-trust-women/#comment-6894]
Yeah, that’s basically the argument the women’s groups that were part of the eugenics movement made at the turn of the last century. Part of my research is reading the submissions the local Council of Women made to Parliament about why we should round up all the crippled women and make sure they didn’t breed (they were more “fecund” than the able-bodied women, after all), and it’s full of “because we have to take care of the results, we women”. It’s very disturbing reading.
.-= Anna´s last blog ..Look, over there! =-.
Zen said:
“Things that would help? Affordable child care. Knowing that I could take my child somewhere s/he could interact with other children and burn off that energy — that I could afford! A support system of other parents with disabilities! People who understand the difficulties I have, who wouldn’t judge me if I had to pull out of something at the last minute.”
Yup. A lot of times we say “choice” like it equals “abortion”. Choice also includes the other stuff, like childcare and having a safe and supportive community. Choice also means giving people real material options.
–IP
““Hey, you decided you want a baby. You don’t get to decide that you don’t want it because it’s liable to grow to be the wrong person. No prenatal testing.” But there are so many things where prenatal testing can help parents prepare, get necessary support, or allow physicians to be ready with life-saving stuff at the birth.”
This impulse is arse-backwards. You cannot start fixing the ableism in society and the ways in which individual lives are constrained by changing prenatal testing. Women will continue to need prenatal testing, not just to prepare for birth but to arrange abortions, so long as society fails to value people with disabilities and fails to support parents of people with disabilities. Fix the ableism (part of fixing the kyriarchy) and get the support structures in place – THIS is what is needed, not blaming often-marginalised pregnant people for trying to survive in incredibly difficult circumstances. Think bigger; the structural and systemic problems are the issue here.
IrrationalPoint, that’s a very good (and very rational) point. It’s one thing I have to admit as an Australian looking at the US framing of the “choice” debate – it all appears to centre around the first trimester of pregnancy, and before then or after then the whole debate is either pointless or useless. But the reality is that the first trimester of any pregnancy doesn’t occur in a vacuum – it’s part of a temporal continuum, and anywhere along that continuum, the presence of other options allows other choices to be made. For example, in my own case, I know that should I fall pregnant, I’d probably choose to carry the pregnancy to term. I know I have a support network available to me here, since I’m in the same city as both sets of the hypothetical child’s grandparents, as well as at least one uncle, and a couple of older cousins (so there are plenty of options for babysitting if I’m having a really rotten day). I wouldn’t have the same sorts of financial hassles that someone in a similar situation to me might have in the US – the Australian welfare system is a bit more supportive of families on low incomes.
Just having those options available to me means a contraceptive failure (or a surprise visit from an archangel) wouldn’t be a disaster. A shock, yes, but not a disaster. Of course, none of these options really alter the cheerful truth that I truly don’t understand small children (I can cope with babies, I can cope with teenagers, but between those two points they’re aliens from the planet Strange) and that I really am not confident of my ability to be a good parent. It doesn’t change the reality that my life at present is not set up in a way which could easily accommodate a child, and that I’m fine with not having children (I prefer being an aunt – I can hand them back when they’re irascible).
Choice isn’t just whether or not to carry a pregnancy to term. As far as I’m concerned, the whole basis of my identification as someone who is pro-choice is the recognition that each pregnancy is the potential to create another functional adult (okay, there’s about an eighteen year lead time on the potential, but that just means it’s a *BIG* choice).
Lee, consider how other rights and freedoms are viewed, such as free speech. Respecting the right to free speech does not mean that you agree with everyone’s speech or motivations for speaking, it means that you respect the fact that they have the right to speak freely and no one has the right to silence them. Glen Beck has the right to free speech, that does not mean his speech is not nasty and, in many cases, motivated by bigotry and hate. A woman with a wanted pregnancy who finds out the fetus may have a disability and aborts because she thinks disabled children are inferior is being an ablist ass, but ablist asses have rights over their own bodies as well. Everyone has the right to be free from forced pregnancy and forced birth, regardless of their reasons for wishing to terminate. Period. But that does not mean that bigoted reasons are not still bigotry.
I’m not sure I would classify prenatal testing as a “need,” exactly, but the problem certainly goes beyond individual “choices,” and even prenatal testing itself. One significant factor is a huge, pervasive, systemic bias towards providing funds for genetic research–conducted in the hopes of creating additional prenatal tests–rather than for services for PWD and families. This bias is there in both private and public expenditures. (i.e. both Autism Speaks and the “Combating Autism Act” devote a majority of funds to research, oftentimes genetic research, and very, very little towards services. I’m sure that this bias is there with other disabilities as well.) This deplorable allocation of resources, too, is a choice (made by voters, legislators, and donors everyday), and one which has a profound impact on the entire society.
@cathy You nailed it, IMO.
@Anna
It may be true that early eugenicists used that argument, but that doesn’t erase the fact that women ARE expected to be the automatic caretakers, even nowadays, to the point where their own personal life and autonomy falls by the wayside. And that’s a problem too. No mother’s, no woman’s life should have to be dominated by the endless grind of caretaking (this applies to abled children as well: it’s exhausting, unrewarding labor) because the rest of the world won’t pick up the slack.
When I read this, I think about my mom. She has bipolar, started taking medication for it after she had me, which is when she also got her tubes tied. About three years later, she found herself pregnant with who would be my sister.
There is No. Way. she could have made a “correct” choice in terms of societal acceptability.
Terminate the pregnancy? ZOMG, MURDER!* at least according to our pretty fundamentalist religious community.
Remain on medication while continuing the pregnancy? HOW SELFISH CAN YOU BE? WHAT IF YOU HURT YOUR BABY?*
Discontinue medication while carrying the pregnancy to term? WTF, YOU CANNOT PARENT YOUR BORN CHILD WITHOUT MEDICATION — YOU’RE BIPOLAR, FOR CHRISSAKES!*
* All of these are close paraphrases of how my mom characterized people’s reactions when talking about this with me as an adult. I have taken liberties in shortening “ZOMG” and “WTF” into ‘net acronyms.
But you know what? Mom’s a smart, compassionate, capable person. Always has been. When she decided to do what she thought would be best… it turned out okay.
Ergo, there’s a reason I’m pointing it out as being an argument the eugenics movement and first-wave feminists used. There’s a history here, and one that I’m not sure a lot of feminists are willing to really consider – the foremothers I keep being told to revere for what they did for me would have argued that my husband should be locked away.
And, frankly, you’ve described having a child with a disability as the “endless grind of caretaking” – because what? Having a child with a disability is nothing but pain and suffering? Because it makes one’s life miserable? Because merely having disability in your life = endless grind and caretaking and misery?
You are talking to *actual people* with disabilities – adults who were that “endless grind of misery”, adults who have children you’ve just characterised as an “endless grind of misery”.
I’d like to know why.
Yes – totally, 100%, in a world where there are limited supports for families affected by disabilities (except for other families with disabilities), even in Socialist Canada where the health care is “free” it is damned difficult to get support for a child with a disability. It’s rolling a rock up hill. But it is NOT an endless grind of misery, and telling people that their birth was nothing but misery to their parents is not actually helping it. Attitudes like that fuel ideas like “women who chose to have children with disabilities are doing something wrong and don’t deserve help and support.”
Not to mention it contributes to the idea of disability as naught but misery and suffering. An attitude that quite literally kills people.
It never sits well with me when people bring up women’s role as caretakers as a sole response to anything that advocates positively for PWD and the elderly: it feels a little bit like “You can’t make me,” like being told “I am going to fight my oppression by entrenching yours.” It is one thing to acknowledge the culture that hangs women out to dry on the matter, but it is quite another to use this fact as a refutation when PWD argue that their lives are not, and should not be, expendable.
I really hope I’m not being hurtful to anyone, but I feel like something is being left out of this conversation: pain. I have chronic treatment-resistant depression (currently in remission, thank God) and Ehlers-Danlos syndrome, both of which cause (in my case and most cases I’ve heard of) serious pain. I am conflicted about the future possibility of having children (I’m 24, and I wouldn’t have had kids by now in any case), because while I recognize that atypical mental or physical existence is not a burden in itself, I have a hard time getting to that position on pain (mental and physical). Honestly, if anyone has experience with or ideas about this issue, I’d be really interested to hear about it. Thanks.
Lila, first let me reiterate: your feelings are your own, your reasons are your own, and your decisions are your own. You have a right to have them, and no one can take that away from you, and you do not have to change any of it for anyone else’s sake.
I stated from the start: there is no such thing as an Especially Bad Disability that makes life not worth living. I will not support the hierarchization of disability. The minute we make an exception for this disability as being Especially Bad, we concede the most core value of disability activism: that there are certain states of being that are more/less valuable than others. If we make exceptions, we are enforcing the same ableist structure that oppresses us, and using other people’s lives to do it.
Life with pain is life. Period. It can be a bad life or a good life. Just like life without pain. There are people without pain who have completely shitty lives, full of misery and suffering. And there are people with pain who have wonderful, deep, connected, enjoyable, fantastic lives. That’s the thing about life. It can become just about anything.
I grew up under abuse, poverty and an untreated chronic pain condition. And I’d still rather exist than not exist. Now, when it comes to pregnancy, birth or abortion, the argument changes somewhat: it is your decision whether to create another life and allow it to come into existence. You are not obligated to create that life just because the person who results might prefer to exist. That is an anti-choice argument. But at the same time, if you are open to creating that life, and just choosing what kind of life to create… when you make a decision about which life is better to create, and which life you “shouldn’t” create… you are putting a value judgment on the lives that already exist. You are telling them that you don’t think they “should” exist.
It’s one thing to decide “I cannot handle taking care of this person in these circumstances in my life right now.” It’s another thing to decide “I don’t think this kind of person should ever be brought into existence” [by anyone or by yourself individually].
That’s the distinction I am trying to make when it comes to everyone’s personal choices. Everyone has a right to their own choices! But the reasoning that underlies some of them is fairly unsettling, from this perspective.
In case my other comment isn’t getting through moderation (if it’s the latter paragraph that’s offensive, amandaw, you can just delete that part), I’ll just simplify my earlier comment and end it on this: I think that it’s going to be necessary that social services for all mothers and all PWD improve across the board in order for this type of bigotry to decrease significantly. If having a child with a disability isn’t seen as such a burden on mothers in the popular imagination anymore, fewer women will bristle at the possibility of having one.
I am so glad you’re addressing this. I have seen this kind of assumption so, so many times in pro-choice discussions, and it always unsettles me. There is a nice, neo-eugenic ring to the idea that disabled children shouldn’t be born, and that disabled people are irresponsible to reproduce.
Human diversity exists for a reason, and being disabled /= a worthless life.
Thanks for a great post. I have a physical disability and am a parent. People’s attitudes really piss me off a lot of the time.