22 September, 2011

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.


  1. I've noticed that when disabled people do the exact same thing as normal people it often gets called "self advocacy." I think this is why writing a blog can morph you and other people into being a "self advocate" (or me asking a teacher to give information in a different way). Since you're disabled you can't just be a woman who does things like everyone else, even though you're not a "self advocate" in any absolute way. Really no one is, though some of us are one less than others. (I'm getting better. Sort of. Maybe.)

    I know there's a history behind the term "advocacy" but I guess I'm ready for some more history.

  2. This is the 2nd time you and I have posted on very similar topics in very close temporal proximity. Weeeeeeiiiird.

    It seems that we can't win as far as self advocacy (I am so sick of that term) goes. Like, if you're publicly disabled, everything you do is automatically supposed to be advocacy or something. If you choose to advocate, then there's set A of problems. If you choose not to, there's set B.

  3. I wonder if you were the person who brought it up in the thread? anyway I think you had your post up first.

    I got really frustrated b/c I saw some of rrh's friends on his blog refer to us as "the self-advocacy people." which is a perfect example of why I've started to hate the shit out of that word! it's like a sneaky euphemism to avoid saying "disabled people are dicks, why don't they just go away?" instead it's "the self-advocacy people" like we're a political group.

  4. There's also the fact that "self-advocate" is a qualified statement which implies that the default state of advocacy rests with outsiders who are not disabled. I refuse to use a word which highlights my second-class status when it comes to narrating my own damn experiences. It makes me quite upset.

  5. Can I ask you something? Who are your advocates? Who would, ideally, be your advocate? What does the right kind of advocacy for you look like to you?

  6. Wow that's a hard question. Advocacy is such a big idea that I don't know how to answer it. But I can try to think of some actions that are anti-ableist and I'm sorry if that seems like a not-answer but it's the only way I can think of to answer. This is a list of anti-ableist actions for both disabled and non-disabled people.

    1. Believing someone when they say they are disabled.

    2. Believing someone when they say they need a particular kind of support. (I don't mean you're always required to give support to someone, but the reason you don't do it should be because you don't want to take that on, not because you think they asked you for support because they are a liar or they want people to do things for them.)

    3. Remembering that disabled people have points of view and experiences. For example: being aware that anyone you meet might be disabled. Also: if someone tells you they have a kid who is disabled, ask them about who their kid is and what their kid enjoys and is struggling with, instead of expressing sympathy and focusing on their experience having a kid who is disabled. When someone who is disabled does something you think is weird, don't think about how weird their disability is, try and find out why they did it.

    4. Noticing that stuff is ableist and pointing it out. (Pointing it out isn't a requirement, not everyone can deal with that kind of interaction.)

    5. When noticing that stuff is ableist, thinking that it is wrong because of how it would affect a disabled person as well as how it would affect non-disabled people.

    6. If you are disabled, being someone like "Ron" who lives with confidence and knows that his support needs are important and ordinary. Again, this is something that not everyone can do--like I said, I can't do it--but it makes a big difference and I try to do it even though I usually can't.

    7. If you are not disabled, talking about your disabled friends and family as if they are normal, complex people worth thinking about.

    that's all I can think of?

  7. It occurs to me your question may have meant something totally different from how I took it, can you rephrase it?

  8. I am *my* advocate. And other disabled people doing work so that people like me are treated as really real people.

    People who tell me and people like me to STFU because we're too (whatever) are not.