17 August, 2011

why is arguing with you the only self-advocacy that counts?

I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.

I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.

The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.

First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.

But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.

I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.

Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.

Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.

Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:

*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments

All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?

Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.

So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.


  1. i think what non-disabled people consider screaming and smashing is incredibly powerful self-advocacy. it is for me, anyway. and i think it's up to the individual to decide how to self-advocate? like, for me- pissing allistic people off and challenging ideas about autism and bigotry is self-advocacy. that may not be another autistic person's self-advocacy but it's a really personal, really powerful thing.

  2. Aw, the link to Amanda Baggs' article doesn't work. I've actually been looking for it for a long time... very upsetting.

    Thanks so much for responding to this because the our-children-can't-self-advocate angle was one that really disturbed me, but I was having a hard time tracking and responding to all the different topics that were getting brought up on that thread.

    Also -- if you need a script for asking people for references, Julia and I actually made one a couple weeks ago.

  3. I had thoughts about that comment thread, too. Along a different vein than this, though. I'll see if I can manage to string it into a coherent post at some point.

    This post of yours covers an aspect that did pop into my mind, but that I did not feel capable of writing about.

    I always end up feeling guilty for not being able to do more things, when I can do so much (except for those things I can't do).

    Your bullet points - almost all of them apply to me as well, and as much as I do like to blog and I do feel empowered by sharing my experiences online, I just cannot use a blog post to apply for disability aids. Such things must go through the "proper channels" which I have huge troubles navigating.

    So what use is this online communication which the parents call self-advocacy, when none of it is gonna get me the help I need, nor make my situation understandable to the people around me.

    I just got a new aide. The third in less than a year. My first was utterly awesome, but she quit her job, and so a new must be assigned to me. Met her for the first time yesterday. She seems okay, but now I have yet another "getting to know" process that is so exhausting. Because she needs to know teeny details about me, otherwise she cannot help me get the help I need - cannot advocate for me. And I need her to help me like that, because most of the time, I can't advocate for myself.

    And most of the time being able to write a well-worded blog post but not to ask for the help I need, makes me feel like an utter failure. And having those disability-appropriating parents tell me (and/or people like me) that I can clearly self-advocate makes me feel so erased I hardly even have words for those emotions.

    Thank you for writing this post.

  4. Zoe- I regularly read your blog and have been for a while. Since you don't get a lot of comments I didn't think to watch for comments after reading your post... and I liked that post. It was almost like someone else eloquently expressing MY opinions.

    I don't know. I'm sorry you have to deal with this and I am thankful for your writing, even though I don't think I've ever said anything to you.

    That comment thread is a mess and I am very glad I missed it because if I had seen it I would have been involved and I would still be pretty upset.

    I relate to a lot of what people are saying about failing to do the "right" kinds of (self)-advocacy and being upset about that. But I do what I can, we all do.

  5. Hi Pancho,

    Thanks so much for saying all that, I really appreciate it.

  6. Thank you for pointing out that "self-advocacy" isn't a binary, can or can't, does or doesn't issue, and that there are an enormous number of ways that a person can, or cannot, do this.

  7. Thanks Rob! Are you Zoe's dad?

  8. You made some good points in this post. There is also a tendency for parents of those who are non verbal to think that if you can self-advocate, things are not that bad for you or there is nothing wrong with you when that is not the case.

  9. oh I wouldn't say parents of those who are nonverbal. I'm not denying Schuyler RH in particular is more severely disabled than I am, especially when it comes to speech. But I think parents who do the can vs. can't self-advocate thing, and/or "you're certainly a very unusual disabled person (read: your life is awesome! stop talking!)," have kids with a wide range of abilities. You can present pretty much anyone as having a horrible life and/or being unable to self-advocate because those are two INCREDIBLY vague things.

  10. (not to say, obviously, that all of these things were done in this particular case. but they sure do happen.)

  11. I can't ask for help. I mean. . . I CAN, of course. . . it just makes me feel extremely uncomfortable. I feel like it puts me at their mercy to some extent. It's the old "Godfather" exchange to some extent. . . yeah, sure I can do you a favor, but one day I'll call on you, and when I do, you can't refuse the payback.


    Really enjoyed the Bad Brains blog too.