30 September, 2011

I got in an argument with a friend, as one does, and said something I may not have actually come out and said on the Internet before, but it is the basis of a lot of things I think. I really respect her for being willing to have this conversation with me.

her: i don't want to have a child with a disability because i know that if i do i will have to, in fact, love that kid like crazy and put my everything towards its thriving. i mean, depends on the disability but i think that a lot of parents do struggle with that

me: okay well, I don't mean to be a dick, but just so you know people can accidentally have a child with a disability, my mom did, obviously. so, like, keep it in mind b/c I always hear people being like "I'm not going to have a kid with a disability because I can't handle, so I'm getting amnio" or whatever. and I'm like....ehh.

her: no, of course but amanda, i don't mean to downplay whatever your mom went through, but you obviously do not have as severe a disability as someone with downs. if my kid had aspergers it would be really different

me: oh my gosh, for real?

her: yeah of course

me: how many people do you know with down syndrome

her: well, only patients

me: I know a lot of people with down syndrome and when people say things like that I wish they could know all the people I know

her: but anything really, whether it was downs or something like marfans or fragile x. i know that they are and can be really, really awesome people to know. and i'm not saying i wish that they don't exist or anything like that at all, it's just obviously they aren't easy kids to raise.

me: you think marfan's is worse than autism?

her: i don't think marfans is worse than autism, but there is a spectrum with autism

me: okay like, I don't want to be a dick to you b/c I think you're really cool but...this is really silly

her: no it's cool, i want to know what you think

me: and I know you feel like "Amanda's not really disabled, she's my friend, but ~some people are really disabled and I feel different about them~" sorry if that's a harsh way to put it, but something I have noticed about the way people talking about parenting a disabled child: people can frame any disability however they want, like, oh it's really difficult, so difficult that the parent doesn't have to be judged for any decisions they make, ever.

I actually think something that has made this really clear for me is that autism is a really stigmatized disability in terms of kids with autism supposedly being really, I don't know, cold and smearing shit or something, and with down syndrome there's more a stereotype of kids being sweet--so actually you see parents being able to frame raising a kid with autism in a really negative way, much more negative than parents can usually get away with when it comes to ds, even if you compare two essays/blogs/interviews/whatever where the kid with autism is more independent or whatever than the kid with ds. and that is why I find the "your disability is milder" thing to be kind of a red herring.

I grew up disabled in a really stereotypical way, like I felt really guilty and like a huge burden. it doesn't really matter what disability I have, it's a cultural experience that people have across levels of independence, IQ, etc.

(additional note: I was predicted not to be able to live independently, or at least that was implied, and this hangs over like...every conversation I have with my parents. it's a huge factor in our relationship and in how I live--and actually, in my abilities as well. and sometimes it annoys me when whether someone actually CAN live independently is treated as the most important thing when they're talking about disability or ableism. because tons of stuff can happen to you just because of predictions that someone made about you when you were little, and that matters even if the predictions were wrong!)


  1. Here is a thing I believe! I believe that people should not have kids if they are not prepared for those kids to be disabled (or gay or trans, for that matter). If you think you couldn't handle any of those things, what will you do if they happen? Like, even if there were a prenatal test for every congenital disability ever (shudder), there's sill acquired disabilities that can be just as "severe."

  2. I agree, Zoe. I've gotten for saying this before in feminist circles, but I really do believe it.

    The fact is, disability is part of natural human variation. Anyone can become disabled/more disabled at any time. Someone who goes into parenting thinking they only want a "normal" kid (whatever that is) may well end up with a disabled child later. And I know many would say, but the odds of a child being in a serious car accident/hit by a bus/etc. are not high. Maybe so. But there are a lot of ways to acquire a disability, and life doesn't come with guarantees. For the kid who does end up permanently disabled due to a car crash, the odds don't mean a thing. And it is very hard to be disabled with parents who only want non-disabled children. This also affects children who are less obviously disabled as we feel pressured to be "normal" in order to please.

  3. What gets to me when people say things like that are really two things:

    1) 'Normal' children are actually really difficult to raise by themselves, and they will not actually turn out like you think they will. You can't predict what a child will really be like.

    2) Saying people should abort disabled fetuses because it's so hard is basically saying disabled people whose disabilities were detectable in the womb shouldn't exist. That's frightening.

    I also think what happens is they construct hypothetical or imaginary children and assign them all these different characteristics based on stereotypes and fears and assumptions and prejudices, and then come up with reasons why those things are bad.

    And maybe this is just speculation, but if the first thing that comes up to mind when you're talking about you having children is reasons not to have them, maybe you don't want to have children. That's one of the ways I determined that the entire idea of being pregnant was entirely not for me.

    For what it's worth, my mom has told me that she wouldn't have aborted me. And I think other people like her do exist.

  4. I agree with Zoe. I don't think you should choose to have kids if you're not mentally prepared for, like, anything. Obviously people accidentally get pregnant and choose to go ahead anyway--50% or something of all children are unplanned.

    A kid can have a disability that won't show up on prenatal tests. A kid can become severely disabled in an accident. A kid with disabilities can exceed all expectations, and a kid without disabilities can turn out to be hell to raise in any number of ways. And then there's all the suffering and disappointment inflicted by parents who just won't get that your child is not there to be a projection of your wants. A child isn't there to be what you want it to be. You just have to release yourself from any expectations about what a child is supposed to be, because chances are that no matter what your expectation is, your child *won't* be.

    I'd be *scared* to have a child with, for instance, Down Syndrome. But I'd lean towards having it. I only know one person with Down, but...it's not that she's stereotypically sweet and warm, it's that she's off the charts emotionally intelligent. Not that I now have that expectation of kids with Down Syndrome, but it made me go "okay...this is something that can happen. This is something I could deal with."

  5. I'm firmly prochoice, and I also think that if someone wants a kid, they want the kid they have. "I want a kid as long as they are perfect" isn't...right.