05 December 2011

Advocacy and Ableism

Trigger Warning: Extensive discussion of ableism.
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I mentioned to a family friend who has known me since early childhood that I've been involved with autism advocacy. She blinked, inclined her head slightly to the side, and asked, "Have you worked with children with autism?"

"No, actually," I responded in a calm, even tone. "I'm Autistic, and I know plenty of us." She stared, a little in confusion, as if not quite sure how to respond to that statement.

It's a question I get far more frequently than I like to admit or think about. Why does everyone automatically assume that because I can -- and do -- speak, and because I advocate, I must therefore be the relative or friend of an Autistic person, but not possibly Autistic myself? (And I have been diagnosed, in fact, by a neuropsychologist who specializes in ASD and who has sat on the board of an autism-related organization.)

And another thing. I had a conversation maybe a year ago with an acquaintance of mine, to whom I disclosed that I am Autistic. She responded, "But you're so smart!" And another acquaintance, at the same disclosure, interjected with, "But you seem normal to me." I'm expected to take this as a compliment. For some reason, looking normal makes me more human, because looking Autistic is a bad thing, something to be avoided, a taboo.

Why?

Some of you might not be familiar with the term "ableism." Some of you might be very painfully aware of it. For those who aren't, let me summarize. Ableism is the belief or attitude that an individual or group of individuals are superior or more human on the basis of their ability than people with disabilities, including Autistic people. Ableism is the belief or attitude that people with disabilities, including Autistic people, cannot have agency, cannot really advocate for themselves, should be pitied or cured, and cannot accomplish much so long as they continue to be disabled.

It's like racism, but against us. Me.

I grew up in a privileged suburb of Boston that around the 2010 census last year, still had over 90% White (Caucasian, European-American) people in the population. Less than 4% of people in my hometown were below the poverty line. Some houses went for a few million dollars. Walking around my hometown, you won't see homeless people or gang members on street corners. You won't see poverty or even much diversity. I hadn't thought about racism much because despite being Asian, I lived in a fairly homogeneous area and went to a regional school with a very culturally diverse student body.

That's privilege. It's not always recognized, acknowledged, or understood, but that's what it is. I never expected to be discriminated against on the basis of my race or religion (I'm a Protestant Christian in an area where a decent majority of the population identifies as some form of Christian), and never experienced that kind of discrimination. No racism here.

But ableism was a different animal altogether. I can't tell you how many times I've been told, "Well you're not really Autistic" or "You seem to be very high-functioning" or "I don't think you're really Autistic." And every time I mention my advocacy work, the mild look of curiosity, head tilted to the side, innocent, almost hesitant question -- "So do you know someone...?"

Why can't I be an advocate and Autistic? Why is it assumed that the only possible reason I would have any involvement or leadership in autism advocacy is having an Autistic relative or friend who certainly couldn't advocate for him or herself, and therefore I must advocate for this individual?

Parent advocates certainly have a time and a place and a valued opinion when advocating for their own children -- as minors -- or when allying with those of us who are Autistic in advocating on the larger level. I'm not writing this to disparage your role, undercut you as advocates, or accuse you of bad parenting. I'm writing this because I'm sick and tired of ableist attitudes -- whether from you or anyone else. (And certainly not all non-Autistic parents of Autistic children think in ableist ways. The problem is that plenty do. Many. Maybe even a majority.)

Think of it like this. Imagine an African-American/Black Civil Rights group led by a board and staff of White people, claiming to speak on behalf of all African-American/Black people, whose (White) leaders are thought of as revolutionary and innovative civil rights activists and advocates, and who rarely, if ever, include actual African-American/Black activists and advocates in their leadership or planning or policymaking. Or a LGBTQ Civil Rights group led by a board and staff of cisgender heterosexual people, claiming to speak on behalf of all LGBTQ people, whose (cisgender heterosexual) leaders are thought of as revolutionary and innovative civil rights activists and advocates and...

Both of those ideas would be abhorrent or objectionable to most African-American/Black people or LGBTQ people, and probably laughable even to potential opposition to the aims of those civil rights movements.

So why is this not only acceptable but the norm in autism advocacy?

Why is it assumed that Autistic people have no agency, are not competent, and cannot possibly understand the intricacies of advocacy?

Why does every person I meet assume that my advocacy makes me the non-Autistic relation to an Autistic person?

It's not something I can begrudgingly accept or resign myself. It's wrong. It's grossly unfair. It's ableist. And every single time it happens, I wince; my breath catches in my throat; my voice tightens; I can barely speak; the words struggle to slip past my lips; I look the person in the eye; I say, "Actually, I am Autistic. A large number of us are advocates."

8 comments:

  1. Excellent post! I agree, "it's wrong, it's grossly unfair, it's ableist." It's also ignorant and judgmental.

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  2. Thank you for that - a great post!

    What really drives me insane is when people question my HFA diagnosis, making comments such as, "you seem pretty normal to me", or "well, it's just a label - I suppose we're all autistic to some degree", or worst of all, I've even had people (who know nothing about atism I hasten to add) say, "you don't really think you've got it do you?", even though I was diagnosed by an expert in the field.

    It makes me so angry, that because after 40 years of struugle I've moulded myself into the right 'shape' to be accepted by the NT world, that they now think they have the right to deny my neurodiversity! I wonder how much they'd like it if I did the opposite and told the NTs at college that I didn't think they were normal and that I suspected them of having a neurological condition!

    Basically, what these comments do is turn who I am upside down: instead of being viewed as someone who's battled for years with social & cognitive deficits, but finally found the strength to overcome many of these in order to squeeze myself into the mainstream and live a conventional lifestyle, I am instead perceived as someone who's perfectly fine, but a little weak minded, looking for an excuse to pin my failings on, and a bit of a fantasist to boot!

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  3. It's possible that one of the contributing factors is peoples' reluctance to self-disclose, since it's so common for those of us who do self-disclose to not be believed, or to have our disabilities trivialized, or to be underestimated or infantilized as a result of our disclosure. So instead, when a random stranger asks us why we're into Autism advocacy, we say something vague about a friend of ours who's Autistic.

    I don't think I've done this in the Autism context (partly because I just haven't been part of the "scene" for that long) but I've definitely done that in the mental health context. Even when interviewing for jobs at mental health advocacy organizations where you'd think there'd be minimal repercussions from self-disclosure.

    (sorry for the long thread on facebook BTW)

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  4. Kudos! So well written. I am a school psychologist in the Chicago area (no I'm not autistic, but I do have tourette syndrome). I have a private practice and do a lot of evaluations and advocacy. I would like to find an advocate with autism for a situation I'm working on. Do you know any advocates with autism/asperger's in the Chgo area?

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  5. Shari, I'll check back and shoot you an email to see. I found your email on your site. Thanks for reading through the article.

    And whoselaw -- don't worry about the Facebook thread. I am always happy when I see people engaged in meaningful, intense conversation over anything I put to Facebook. Part of the reason I post the links that I do is to generate that kind of discussion.

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  6. Just today I got, "so, is your asperger's really mild, then?" I don't even know where to start! Do I start with the fact that there is no such thing as "my asperger's", that I am simply an autistic person? Do I start with the fact that I don't identify with the asperger's label, and why it is relatively meaningless? Do I start with the concepts of mild and severe being so limiting as to be meaningless? Do I start with how offended I am that a stranger makes an assumption about my abilities and identity based on being around me for a few hours? Ughhhh. Great piece.

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  7. That was a great article. I, myself, have Aspergers and am a 44 year old white woman with two small kids. Apparently, I cannot function. Everytime I get into a snit, whether rightfully so or not, or whether my mood is just this side of perfect, my Husband always says 'Well, it's the autism. Or else you'd know what to do." GGGRRRR! My friends on Facebook think I am being my usual, cuckoo self and trying to go for a laugh by saying I am autistic.It's just not funny having that whole "oh, well....it's ok, maybe you can just find someone like yourself." WHAT?

    I can sort of understand, even in this day of autism-awareness, of using the old visions of what severe autism used to mean: people who would bang their heads, refuse to look at people and not speak for years. I think THAT is the reason WHY (although a crap excuse nowadays) people STILL think of autistics as people who are institutionalised, as needing nurses, etc. Hell, I even heard about the possibility of having too many brain cells/neurons as a reason for the behavior that we have: it's almost like going on a roller coaster with twelve cars full, not the usual one, and having it go too fast and crazy. It's always possible, however I used this opportunity to tell people that I was suffering from too many brain cells, not too less, like they probably did. That remark actually loosened people up a bit. Autism is just another mutation of life, such a redheads and albinos. Part of the things that make us all different (Thank God).

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  8. Absolutely! I love your African-American/LGBTQ analogy.

    I really admire your graceful response when you get this garbage in real life. Hopefully, you've educated a few people.

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