03 April, 2010

sometimes the best self-advocacy is shutting the fuck up

I really, really don't want to write about disability for normal people.

I don't want to explain that I don't see people as objects. I don't want to explain that I'm not just imagining that I have a disability. I don't want to have to make an analogy where I go, "Some people with cerebral palsy can talk and some can't, they all have cerebral palsy, and it's the same with autism spectrum disorders." (Also, who knows if people will even get that. My dad thinks that the reason CK can walk is that he's really energetic and determined.)

I have recently been trying to have these conversations with my mom. I don't know why. I just get told that, for example, I should imagine why someone might kill their kid with a disability. This really upsets me because it's not that I don't have compassion for people who do bad things, but constantly reminding me to have compassion for a particular group of people who do bad things seems to imply that what they do is less bad than what other people do.

My mom said that maybe when I'm older I'll learn not to be so emotionally affected by things like the ableism in Precious. When she was trying to explain why Autism Speaks is okay, I said, "It's different for me because all this stuff directly affects me," and my mom got mad and said, "Don't you think autism affects me?"

Well, apparently not. Because if it affected you I think you'd probably understand a fraction of what I'm talking about.

(Don't think it's just my mom. It's not just my mom.)

I'm not even a radical. But you know what, I'm sick of caring whether anyone thinks I am. Actually, I'm just not going to try to engage with any normal people about this stuff ever again. I've been trying to understand why I'm so depressed all the time now, and I think it's because I've developed this idea that I should be trying to express myself on these issues in Real Life. I think I'm going to throw in the towel, not tell anyone I have ASD unless they definitely need to know, pull out all my passing stops, and not fucking talk about this shit anymore.

I like writing this blog because I think some people are affected by it. I like working with other DD people, because I think some of them are affected by it. Those are the only things I want to do, disability-wise, and I don't want to feel guilty. I want to compartmentalize my identity and my beliefs. I think I'm going to have a great time.


  1. I really love reading your blog (even though I lurk most of the time). I'm glad you aren't giving this up; as a neurotypical educator, I've found it incredibly helpful to read your thoughts.

    I went through a period where I felt similarly to you, but in my case, it was about queer identity. The two identities aren't the same, obviously, but I think the feeling of "screw this, I'm done" results from the same sort of overwork as an oppressed or less-privileged person. I expressed my exhaustion to my mentor, and he reminded me of two things: first, that it is never the job of the oppressed to educate the oppressor, and second, that it's better for your mental state to speak up when you feel someone is being unfair to you, but your responsibility stops there. "Why struggle with assholes? Just yell at them and then go have some candy," was how he put the second point, actually.

    Anyway, the main point of this comment is that I hear what you're saying, and I'm glad you're taking care of yourself.

  2. Thank you! I'm really glad that you like it and I appreciate you commenting.

  3. Your blogging totally affects people!

    Talking about ableism with people without disabilities (even as a person without a disability) can be frustrating. Even in my Studies of Disabilities class, there are many other students whose own ableism is so ingrained they aren't even close to being able to thoughtfully examine it.

    The conversations you talk about having with your mom reminds me a lot of the arguments I have with my in-laws about race. These issues do impact all people, not just the group who is being discriminated against... it is just a matter of how they interpret their experience. Like, how my in-laws are impacted by illegal immigration (because the have to "deal with" Latinos in their community), but have absolutely zero understanding of what it would be like to live in and then leave an impoverished area of Mexico.

    I know it sucks to be constantly explaining your identity to people who don't share it, but without those statements society likely won't come around to fucking getting it. Imagine if minoritites, women, or GBLT people never explained their true selves to those outside of their communities. While much of their organizing was geared internally to their own groups, they had (and still have) to let the priveleged white guy know what's up, too.

  4. I like your blog.

    But anything you do, related to autism, should be for you. Nowhere is it written (and if it is, show me whatever privileged NT asshat wrote it and I will show them a short pier they can take a long walk off) that all auties who can communicate must use that ability to be translators of autistics for NTs.

    Advocacy is a wonderful thing, but it isn't the only thing, and you need to balance your stress levels. Burnout sucks. Feeling stuck between hiding who you are and explaining who you are also sucks.

  5. Hi Kassiane! I like your blog a lot. Even though you haven't done it in a while so maybe you're feeling sort of the way I'm feeling. It's nice to read writing by someone who has known a lot of kids with disabilities.

    Also--I know this is incredibly general and maybe there's more than one video online of you speaking at a conference. But there's this one video of you speaking at a conference that I once watched and thought was terribly amazing. Partly because of what you said but also because of how you said it, because you were I think more straightforward and emotional than people are expected to be when giving speeches. I thought it was really cool because I feel like standards of "professional" ways to talk can be really used against DD people. I frequently keep quiet because I don't talk "well" enough--and it was so nice to watch your speech because you were so obviously informed and competent and really put the lie to the idea that only people who talk in a "polished" deserve to be listened to.

  6. I have a similar post to this on my blog http://cheetahchottah.blogspot.com/2010/03/discussing-neurodiversity-with-your.html

    I know exactly where you are coming from. My mom and I do not fully agree on this subject, but she has come a long way since I've been growing up. I do not usually have a problem talking about disability rights with my NT friends, except that most of them do not share my intense passion. I have tried encouraging my friends to join the neurodiversity cause on FB, but have not recruited anyone yet. It seems that no matter how hard I try, all my friends can think is "Oh, that is an interesting view."