The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two hours, sometimes for two months, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?
Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.
I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. Their jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.
Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.
The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.
But I am here, not there. Autistics Speaking Day has come and gone, and here I am — still writing, still perseverating, still ensconced in my words and my tears and my veggie-less existence. My sense and use of time isn’t on par with the mythical norm. I am learning, or trying to learn, to take comfort in my lateness, to interpret my lateness as function without the dys, as function minus the –tio and n‘s. Fuc(k) function.
There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”
Perseverative loops, cumulative loops.
What I consider accommodating, they consider unreasonable.
What I consider insulting, they consider complimentary.
What I consider hate, they consider love.
What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.
And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.
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.
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.
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 thanself-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.
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.
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.
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.
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.
** 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.