Protesting Autism Speaks, 10/9 @ Ohio State

Tomorrow (Sunday, October 9) is Autism Speaks’ annual Walk for Autism in Columbus. And tomorrow our local chapter of the Autistic Self Advocacy Network will unite in protest against Autism Speaks and their lack of community support, their high rates of executive pay, their lack of autistic representation, and their unethical advertising practices.

I’m so grateful for the outpouring of support that our ASAN chapter has received from people across, quite literally, the world. But as we approach tomorrow’s protest, I’d like to ask that as many people as possible (wherever you live) could help us inundate our local press affiliates with emails and phone calls.

Here is the contact information for Columbus-area media affiliates:

What you might say if you call or write (feel free to edit):

Hi! My name is _____ . (If you live in Ohio, you might say so. If you’re active in or support ASAN or another disability-related org, you might mention this as well. If you are Autistic or are related to or work with someone on the spectrum, you might mention this as well.)

I’m calling/writing because I have a story you might be interested in. Autistic advocates and their supporters are protesting the Autism Speaks walk in Columbus on the Ohio State campus on Sunday, October 9, from 8:30am until noon. They’re protesting Autism Speaks’ lack of family support. Only 2% of money raised by Autism Speaks goes to families. Given the severe budget cuts facing us today, this is outrageous. Autism Speaks is taking money from Ohio families in desperate need of support and services.

Autism Speaks doesn’t speak for us!

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PROTEST DAY & TIME: Sunday, October 9 from 8:30am until noon (Facebook event page)

PROTEST LOCATION: Corner of Fred Taylor and Borror Drive, by the 4H Center, Ohio State campus (campus map)

The Aut Rapture

Something transcendent happens to autistic people when we turn 21: We disappear. Unfortunately for me, however, I’m 27, still autistic, and still living and breathing on this planet. Yes, my friends: I have been left behind.

My parents made the mistake of not aborting me. And ABA, CBT, talk therapy, support groups, anti-depressants — none of these things have exorcised my autism. Sometimes, when I go to conferences, self-important parents like to pretend that I’m not really, truly autistic, that I have, in fact, outgrown my autism in the most spiritual and inspirational of ways. Because, honestly, haven’t I heard? The good and faithful autistics all recognize the depravity that is autism and work hard, so tear-inducingly hard, to make their disordered brains and disordered bodies disappear. That my disordered self could still exist… that I even want my disordered self to exist… such a pity. I’m so autistic that I cannot fathom how soul-sucking autism really is.

If I will not make my autistic self invisible, then they must. And if “evidence-based practices” won’t do the trick, ableism just might. So, I’m here providing a few suggestions for further infantilizing me, for facilitating a neurotypical brand of the Second Coming:

1. Remember that, while I may exist physically, I do not exist semantically. Pairing autistic and adult in the same sentence, for example, is a no-no. Other off-limits words include woman, citizen, activist, colleague, and anything with a –sex affix.

2. Although I might be an adult in the chronological sense of the word, stress that I will never be an adult in the developmental sense of the word. There are many ways to assert neurotypical dominance in this regard. You might, for example, correct my use of the words depression and anxiety and replace them with sad feelings and worried feelings. When I present at conferences and seem a bit too comfortable in my empowered adult status, you might knock me down a few rungs and ask me at what age I was toilet-trained. And, every time I remember to bathe, you might write me a 1,000-word email, CC four or five of my family members and/or former employers, and tell me how proud you are of me.

From: Dr. NT Knowsbest To: Token Autie CC: Your Mom ; Your Boss ; Your Math Professor ; Your Old Babysitter ; Your State Representative Subject: Go you! Hi, Token!!!! I heard the big news. I think we ALL need to congratulate you on your hard work!

Other infantilizing measures might include, if you’re a soprano or alto, using a sing-songy voice and speaking only in rhyming couplets. But, hey, don’t take advice from little ol’ me. You’re the neurotypical — you’re the adult here.

3. Remind me that I am incapable of empathy and perspective-taking. If I disagree with you, tell me how self-centered I am. Emotionally speaking, I’m forever lodged in the terrible twos, and I’ll just never understand how bad you have it.

4. Emphasize that, unlike real adults, I cannot maintain mutually beneficial friendships and will always fail to meet your emotional needs. Condemn my black-and-white thinking and preach to me about shades of gray. If I pick up on your sadness and attempt to console you — make it clear that you’re not sad, you’re lachrymose. You’re not depressed, you’re bummed out. You’re not upset, you’re very upset. There’s a difference, and I damned well need to learn it. To facilitate this process, draw cartoon faces on the back of your business card and instruct me to keep it handy in my wallet.

The back of a business card. There are three handdrawn faces with expressions of distress, and there are only minor differences in the drawing. The first is labeled UPSET; the second VERY UPSET; the third INCREDIBLY UPSET. There are lines radiating from the third face, and a handwritten caption says NOTE: THIS IS NOT A LIGHTBULB. At the bottom of the card a scrawled note reads XOXO I HAVE FAITH IN YOU!

This is important shit.

5. Never give up on the messy, imperfectible project that is me. No matter how many times I tell you how cruel you are, no matter how many times I tell you how patronizing you are, no matter how many times I tell you how proud I am to be autistic — keep working on that disappearing act. Remember how glad you are that you’re not some bitter, twisted, ungrateful, disordered half-person like me. Remind yourself that I’m so lucky to have such a wonderful, personal savior like you in my life.

This post brought to you by a big a move, a new job, and my lack of existence.

Defending and (re)defining self-advocacy

Yesterday, June 18, was Autistic Pride Day. As I sit in my apartment today, surrounded by half-filled boxes and piles of (overdue) library books, I find myself repeating a line, a line that brings frustration and distress.

In the past few months, I’ve had run-ins with folks from Unpleasant Autism Organizations That Want to “Save the World” with Fear, Pity, Eugenics, and Chocolate Bunnies in Gold Wrappers. Inevitably, we engage in some sort of debate — debates that usually involve me proclaiming the necessity of rights and self-representation and them proclaiming, “The children! The children!”

As The Unpleasants extol the virtues of cures and 600K salaries, they often feel the need to put down the organization that I represent. They blink several times, as though rapid eyelid movement might somehow compel me to make eye contact, and then exclaim,

“Well, what does your organization actually do, other than, you know, that self-advocacy thing?”

This is a question that triggers my gag reflex. What do we do, other than self-advocacy? Other than self-advocacy? Are you kidding me?

What does your organization do, other than self-advocacy?

The implication of this question is simple: Self-advocacy isn’t important or necessary. Self-advocacy is what poor little disabled people do to feel better about themselves. Self-advocacy may be cute and sweet and all fluffy like little newborn bunny rabbits, but it’s not nearly as important as, you know, developing prenatal screening tools or training the autism out of six month olds or inventing fraudulent divorce statistics or selling paper puzzles in the checkout lane. Self-advocacy relies on the existence of autism, and thereby autistic people — and to Unpleasant Autism Organizations, that’s the equivalent of Saw XXIII meets Stephen King’s The Stand (and perhaps with a little Xanadu to boot).

So what do we do, other than self-advocacy? To begin with, I’d assert that if someone even asks that question, they don’t fully comprehend what self-advocacy is. (Ignorance is the nicer interpretation, actually. Some of The Unpleasants do comprehend what self-advocacy is. And it scares them.)

I’d like to proceed, then, with some definitions.

What self-advocacy is not

1. Self-advocacy is not about pizza.
Self-advocacy is not about an able-bodied someone who is so heroic that, once or twice monthly, she orders Little Caesar’s for a bunch of crips. Self-advocacy is not about a neurotypical undergraduate who is, by definition, virtuous and self-sacrificing because he took 45 minutes of his life to teach a few autistic teens the rules of Monopoly. This is not self-advocacy. I repeat: This is not self-advocacy.

A photo of some tasty-looking pizza

Delicious? Yes. Self-advocacy? No.

To recap: self-advocacy isn’t a code word that justifies the infantilization of disabled adults, nor is it about canonizing a new cohort of able-bodied saints.

2. Self-advocacy is not cute.
Hypothetical scenario: You’re making your way down the street and you come across a cardboard box full of puppies. What is this? you wonder. Answer: This is not self-advocacy.

A cardboard box full of puppies

Adorable? Yes. Self-advocacy? No.

I’m not going to say that self-advocates aren’t cuddly (because, you know, many of us freaking are). But, in general, self-advocacy isn’t about making able-bodied folks feel all warm and fuzzy inside. Self-advocacy isn’t about keeping disabled people on a leash, giving them their shots, patting them on the head, and then dropping them off at a kennel when you get sick of them.

3. Self-advocacy is not about one singular self.
In this regard, self-advocacy is somewhat a misnomer. Self-advocacy is not just about individual people — it’s really about, as my dissertation committee puts it, the collective advocacy of selves.

Self-advocacy is too often construed as unreasonable individuals asking for unreasonable and idiosyncratic handouts, when, instead, it’s about self-determination and knowing how one best learns, communicates, interacts, moves, works, lives, and so on. And — this is important — any singular act of self-advocacy brings with it larger implications for other self-advocates. The disability rights movement takes as its mantra the phrase nothing about us without us, a mantra that emphasizes the importance of self-advocacy within the context of a larger disability community.

For example: When I advocated for accommodations for my PhD candidacy exams, I advocated for others’ rights to accommodations as well. My ADA request was not limited to my individual, “idiosyncratic” autistic self — it set the stage (at least, that is my hope) for others to assert their right to equitable testing conditions.

A yellow sign that says NOTHING ABOUT US WITHOUT US

Badass? Yes. Self-advocacy? Hell yes.

It’s easy to dismiss self-advocacy as “that annoying thing that disabled people do” when self-advocacy is thought to be just about that one cute little disabled person who will eat my cold, cheap pizza and who doesn’t really matter anyway.

4. Self-advocacy is not antithetical to disability.
I’m subscribed to a few parent listservs**, which has necessitated my overuse and borderline abuse of cherry-flavored antacids. There seems to be a recurrent, stereotypical theme to many of their discussions regarding their (adult) children: Developmentally disabled people lack the ability to self-advocate. In fact, it’s not uncommon for these parents to portray an inability to self-advocate as a prerequisite for being developmentally disabled.

Such thinking is, to put it mildly, grossly egregious. Whether your disabled child screams in the grocery checkout line or testifies in front of congress, he is self-advocating. Whether your disabled child throws peas in your face or writes a snarky blog post or falls asleep during board game nights or says NO in all capital letters, she’s self-advocating. And none of these things is less noble or gutsy than the other. Disabled people and allies alike would benefit from regarding self-advocacy in this manner.

A line of disabled protesters marching down a street, holding signs in protest of Autism Speaks

Blocking traffic? Yes. Self-advocacy? Hell yes.

There is some truth behind the statement that disabled people, generally speaking, don’t know how to self-advocate. But that half-truth doesn’t stem from one’s dis/ability — rather, this perceived inability to self-advocate is the result of a society that doesn’t want to listen to us. We are not trained to self-advocate; we are trained to be passive. What able-bodied people are taught is a right, disabled people are taught is a burden. Able-bodied people*** have a right to education, gainful employment, romance, offspring, friendship, and independent living. Conversely, when disabled people pursue these things, we are told and retold of the burdens we impose — on our families, teachers, doctors, taxpayers. My education was not a right — it was a burden. These are the messages we receive, both implicitly and explicitly, on a daily basis. We are taught to be eternally grateful, to never raise a stink, because everything we do, need, or request is at someone else’s expense. And we are not as worthy as those able-bodied someone elses.

What self-advocacy is

It is here that I’d like to stop. I could write a million blog posts on what self-advocacy is, and why it’s so important, and why The Unpleasants should not represent it within an other than construction. But I think this is a good place to ask something of my readers. I’d really like to know what self-advocacy means to you.

Happy Autistic Pride Day.


* Puppy photo by sheeshoo

** I’m not insinuating that all parents believe this about their disabled children, nor am I trying to make a blanket statement about parents. I am, however, incredibly frustrated with the pervasiveness of this line of thinking.

*** I would be remiss if I didn’t acknowledge that this rights/burden framework goes way, way beyond disability — race, class, gender, sexual orientation, nationality, and so on, not to mention their intersectionalities.