But lately, I am resisting passing. When I teach, I talk through and about my stims. I fire my rubber bands across the room, trip over classroom furniture, flap and wrench my fingers, rock back and forth as my elbows grate against the whiteboard. This is me, I say. My body is narrating.

When I first read about The Loud Hands Project, I flashbacked to kindergarten and flashforwarded to my future as a teacher. I imagine a world where my hands roam free, where stimming is simply a part of being — and I created the video below as part of that imagining. I hesitate to call this video a poem (because a poet I ain’t). So, I’ll simply call it a stimfest. A captioned stimfest.

From the Loud Hands website:

The Loud Hands Project is a transmedia publishing and creative effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features submissions by Autistic authors speaking about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)

I’m excited about this project, to say the least, and encourage you to read through the project’s website [preferably while hand-flapping]! Stim hard, people. Let your bodies be lively.

–
My co-panelists (Annette Harris Powell and Kathleen Blake Yancey) have eloquently suggested that what we need is a new theory of access. This much is clear, I think—Access has in many respects become an empty signifier, a shiny buzzword that sounds lovely on its surface level but isn’t fully realized in practice.

My own focus here today is disability and the ways in which access-as-concept has come to function not only as a narrative of remediation, but also as a narrative of erasure. When we consider access from a disability context, much of our scholarship positions access as a project of rehabilitation. (Other scholars have made similar arguments as well; for examples, see Linton, 1998; Palmeri, 2006, p. 55; Porter, 2009; Walters, 2010).

i.e., Access is often conceived as such: There is a set of able-bodied us’s eagerly waiting to rescue a few, rare disabled thems who are in dire need of help. When we help them to access our scholarship, our classrooms, our conferences, our interviews, our break rooms… It makes us feel so warm and fuzzy inside, so glad to be alive, so pleased that we could give something back and enrich their lives with our kindness! Let’s go pat ourselves on the back now, yes? /snark

An Autism $peaks sign at Ohio State. Erasure at its finest. (gag)

Before I delve further into access and how we might begin to reconceptualize it, I need to admit something here, in case it’s not evident in my tone: Access and I have a troubled relationship. Most nights I go home wishing that access were a tangible object that I could lob across the room, pummel, and then photograph for my Facebook newsfeed. As an Autistic person and disability rights activist, there has always seemed to me a real divide between disabled and non-disabled conceptions of inclusion—the primary divide existing, as Michael Salvo (2001) and others have noted, in the form of disabled participation and representation, or lack thereof (also see Banks, 2005; Brueggemann, 2009).

Let me provide a personal example of what I mean here:

While consulting with a neuropsychologist several years back, the phrase “paralinguistic cues” first entered my vocabulary. More specifically, I was told that 1) I didn’t convey any, 2) I couldn’t discern any, and 3) I might find some hope with intensive behavorial therapy and social skills training.

Last year, the job search happened, but learning how to read nonverbals didn’t. Suddenly, I was awash in a sea of nonverbals, desperately trying to make sense of intensely social, high-stakes situations. Every moment was replete with inner narrations, memorized scripts and mantras and instructions from the ghosts of behaviorists past— Am I looking people in the eye for ten seconds and looking away for five? Am I inflecting my voice and conveying appropriate affect? Am I counting to three between each sentence? What are my hands doing? Am I stimming? Am I ticcing? Am I rocking my body? Am I delivering an appropriately timed to response to How are you?

I relate this story in order to make a point. As I slogged through the job search, innumerable people took up my access plight as an immediate and pressing concern: professors, mentors, clinicians, doctors, prospective employers, random people from the internet—all of these people were rooting for my appropriate Pavlovian responses in interview contexts. (And, unfortunately, I bought into passing, too—I desperately wanted a job.)

But here is the access problem as I see it, and it’s not limited to the job search, nor is it limited to my own experiences:

First, the burden of access was located on me, and my “success” was dependent on my presumed motivation or lack thereof. We place too much burden on so-called “problemed” bodies and too little burden on the profession writ large. Requesting accommodations, for example, is never an easy process for disabled people—it’s a process that involves negotiating disclosure, legal pyrotechnics, workplace politics, and discriminatory assumptions about laziness, intelligence, and human worth.

And, more troublesome, the discourse of accommodation isn’t one of change, isn’t even one of access, I’d argue. When we (as instructors, administrators, and people in/with power) deny accommodation requests, we do so because we believe such things might alter the fundamental nature of our professional spaces. And when we say yes to these requests, we generally do so because we believe nothing fundamental has been altered. But that, to me, is the sticky point: For a field that’s all about changing the fundamental nature of things, we’re really not all about changing the fundamental nature of things.

Second, rarely was I an agent in the process of making things more accessible, more inclusive, more equitable. And, in many respects, forced passivity is the non-stop, lived reality of disabled people. In college, for example, disability services would give me a checklist of accommodations that I could request (but not necessarily receive)—extended time on tests, use of a soundproof room, and so forth. While these services were certainly helpful, they in no way made me feel like a full participant in my own education, never mind a full participant in the larger project of making the world a more accessible place. How did these accommodations value my autistic personhood, value my ways of communicating, moving, and being? How did these accommodations make me feel like I was a living, breathing part of my classes, rather than a special person in need of special workarounds?

What we need is participatory design.

Third (and finally), the aim of access, much like the whole of behavioral therapy, is to make disabled people “indistinguishable from their peers” (Alyric, 2008). We live in a world that conflates disability with undesirability. It is more convenient that we cease being disabled than it is for the world to become more inclusive of disabled people.

Reconfiguring interviewing practices, or dismantling ableist approaches to classroom management, or reinventing workplace events—these are not undertakings that happen in the name of access. Rather, what’s happening in the name of access is this: reconfiguring disabled people, dismantling their ways of being and knowing, and reinventing them, as best we can, into normate clones.

As I come to a close here, I hope that we can take up some of these issues together in conversation. I especially hope that we might further discuss why and how the twin goals of rehabilitation and erasure are so frequently realized under the bold banner of access. I also hope that we might focus on some constructive possibilities, some ways of re-envisioning access and enacting theory-activism in academic contexts.

As I hope we all know, the predominant emphasis on helping, training, and rehabilitation is a guise for that of erasure. The things I endured in the name of therapy, in the name of training, in the name of interview prep—most had normalization as their end goal. My hand-flapping and lack of eye contact were never valuable communication practices; they were eyesores, symptoms in need of remediation. Paul Collins sums it up well, I think, with the following line: “the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg” (2008).

–
References

Alyric. (2008). Indistinguishable from their peers. A Touch of Alyricism [Blog]. Retrieved from http://alyric.blogspot.com/2008/06/indistinguishable-from-their-peers.html

Banks, A.J. (2005). Race, rhetoric, and technology: Searching for higher ground. Mahwah, NJ and Urbana, IL: Lawrence Erlbaum-NCTE.

Brueggemann, B.J. (2009). Deaf subjects: Between identities and places. New York: NYU Press.

Collins, Paul. (2004). Not even wrong: A father’s journey into the lost history of autism. New York: Bloomsbury.

Linton, S. (1998). Claiming disability: Knowledge and identity. New York: NYU Press.

Palmeri, J. (2006). Disability studies, cultural analysis, and the critical practice of technical communication pedagogy. Technical Communication Quarterly, 15(1), 49-65.

Porter, J.E. (2009). Recovering delivery for digital rhetoric. Computers and Composition, 26(4), 207-224.

Salvo, M.J. (2001). Ethics of engagement: User-centered design and rhetorical methodology. Technical Communication Quarterly, 10(3), 273-290.

Walters, S. (2010). Toward an accessible pedagogy: Dis/ability, multimodality, and universal in the technical communication classroom. Technical Communication Quarterly, 19(4), 427-454.

My commitment had a slow-motion feel to it. As it was happening, I couldn’t believe that it was happening — I was daydreaming, or I was watching a poorly written Lifetime biopic, or I had eaten moldy leftovers that triggered hallucinations, or something, anything but reality. But, no. This was my reality, and my reality soon spiraled into the progressive tense, into something like this:

– They were strapping me down on a gurney.

– They were wheeling me out of an academic building and into the parking lot, onlookers gawking.

– They were forcing me into an ambulance.

– They were dragging me, still on the gurney, into the psych ER, which resembled a TV prison — brisk security guards, cheap wall paint, steel-enforced doors, cameras that aren’t supposed to look like cameras but inevitably do look like cameras. They were dragging me in there. There.

– Soon, they were vigorously frisking me, and they were dumping out the contents of my backpack, and they were treating me like I was a criminal because I carried a bottle of Tylenol and a 3-inch autistic pride button, and they were shoving me, now shoeless and sweaterless, into a doorless room with hard-backed chairs, and they were prohibiting me from making any phone calls unless I did so via speakerphone, and they were threatening me with overnight and multiple-day stays and refusing to let me wear my headphones, and they were mixing up my diagnoses while periodically asking, How are you doing, sweetie? — As if they really cared. As if I were a sweetie.

Before the EMTs bundled me, pig-in-a-blanket style, into the ambulance, my former therapist asked me why being committed was such a “bad” thing. “If you have to ask that question,” I fumed, “then you really don’t have a clue.”

That pre-ambulance moment, to the best of my memory, is when their ventriloquism started. Suddenly, the experts claimed, I wasn’t talking. God, no. That’s your depression talking, they explained. That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.

Hours later, I sat in the psych ward, shaking, rocking, stimming, ticcing — anything to prevent epic meltdown mode.  I was disembodied. Objectified. Powerless. I was freezing, hunkered up against the wall in my new doorless home, watching an eight-year-old kid being forcibly removed from his parents. How do I not headbang? How do I not bite myself? How do they not see our humanity?

–

I have gotten used to not existing, rhetorically speaking. I study rhetoric for a living. I teach it. I have a PhD in it. I breathe it. Rhetoric is everything and everywhere, many of my colleagues say. The exception to rhetoric’s everythingness and everywhereness is, of course, autism.

I’ve reached a point in my adult life where articles on autism and perspective-taking inspire me — inspire me to commit self-injury, that is. Rhetoric is about audience and autism isn’t, these articles say. Autistic people are mindblind; autistic people are masked by a cloud of social solitude; autistic people are self-centered and shrouded by their neurological misery. I grossly paraphrase here, but not really.

And so, I have gotten used to not existing, rhetorically speaking. I will say something about autism, and someone will assert that nothing I’ve said matters or applies to anything. Because I’m self-centered. Because I don’t have the capacity to intuit other minds or understand others’ life experiences. Because it’s just my autism talking.

How can one have autism and have something to say? Autistic voice is the ultimate oxymoron. If they don’t want to hear it, then we haven’t spoken. We don’t matter because we don’t exist. We’re just a bunch of absent sweeties waiting to be strapped onto their gurneys.

That’s just your autism talking, they respond.

–

It is weeks later. I’ve been working, shaky and paranoid, scraping by in an already rough semester, a semester made rougher by male orderlies who find sensory overload amusing.

I am teaching a disability studies course, and it’s now November. We’re reading Dawn Prince-Hughes’ Songs of the Gorilla Nation, an autiebiography. I’ve never had a full class read it before, and I approach the class discussion with an excitement that I haven’t felt since my pre-commitment days.

Something transpires in this discussion, a something that jars me. Some of the students don’t think there’s a plot to Prince-Hughes’ book, that it’s too bogged down in details. Some of them wonder whether her autism made her write this way — some of them doubt her intentionality, her rhetoricity, her capacity to understand writing and audience and perspective-taking. In short, they wonder who’s really talking: Is it her or her autism?

I offer this moment not to reflect poorly on my students — my students are students, people who are kind, receptive, bright, and willing to learn. Rather, I offer this moment because it is iconic and pervasive, because students (and faculty, and parents, and clinicians, and, shit, most people) have learned this response from those who came before them. I offer this moment because I’m pissed off at those who taught them this. I offer this moment because, after it transpired, I flashbacked to my commitment and my forced disembodiment. I offer this moment because I am me, because I am an autistic me, because my autism is not a synonym for demon possession. I offer this moment because I locked myself in a bathroom stall and began cutting my leg with my 3-inch autistic pride button.

–

I recently dreamed that I was forced into a special education class for assistant professors, my 3-inch button affixed to my backpack, bloodstained and visible. This was a waking dream, an unrestful dream, a dream filled with groans and body twitches. The button was how I knew I had a body; the wakefulness was how I knew I had a voice.

But that’s probably just my autism talking.

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.

This.

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.

My silence is, in fact, a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words — your words, the out-of-the-mouth and off-the-cuff kind — I often do so out of fear. Fear that my rhetorical commonplaces — the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds — will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all. Fear that I will lose my job. Fear that I will lose your friendship, guidance, or interest in me. Fear that I’ll be institutionalized. Fear that I will be infantilized. Fear that I’ll be seen as less than human.

This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer to communicate. I understand that speaking is how you best learn and interact. I understand that you take great joy in speaking and listening to others speak. And I do, I really do want to share in that joy.

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that — when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or “scripting” lessons — when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.

My silence isn’t your silence. My silence is rich and meaningful. My silence is reflection, meditation, and processing. My silence is trust and comfort. My silence is a sensory carnival. My silence is brimming with the things and people around me — and only in that silence can I really know them, appreciate them, “speak” to them, and learn from them.

Speaking is an unnatural process for me. When socializing through speech, I will almost always be awkward, and I am OK with that awkwardness. In fact, I am learning to embrace that awkwardness, learning to reclaim and redefine that awkwardness. I am sorry you’re not OK with that, sorry that you feel I need to practice, or take anti-psychotics, or frequent the university hospital’s psych ward. I’m sorry that you won’t appreciate me for who I am and how I operate in the world. I’m sorry that I can no longer consider you an ally, confidante, or friend.

I'm not a checkbox in some symptom cluster. I'm a freaking human being.

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:

• The Lantern, Ohio State’s student newspaper. Email: lanternnewsroom@gmail.com; Phone: 614-292-5721.
• The Columbus Dispatch, Columbus’ major newspaper. Email: Ben Marrison, Newsroom Managing Editor, bmarrison@dispatch.com; News tip phone: 614-461-5200.
• NBC4.  News tips email address, stories@nbc4i.com; Phone: 614-263-4444.
• WBNS-10 TV. Breaking news tips (online form); Newsroom: 614-224-1010.
• WOSU, local PBS & NPR affiliate. Press Inquiries: mediarelations@wosu.org; Phone: 614-292-9678, extension 49730.

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!

==

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)

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.

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.

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.

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.

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.

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.

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.

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.

I hear this a lot lately, primarily from undergraduate students who find autistic self-advocacy reprehensible and/or incomprehensible. In fact, at our protest this fall, someone actually came up to us and said, “If you can self-advocate, then you’re not autistic.” Way to disempower much?

Here is the wonderfully circular logic that has come to constitute much of my advocacy life lately:

Me: What you’re doing is hurtful.
Them: But we just want to help people like you.
Me: You’re not helping. Please stop.
Them: But we just want to help people like you.
Me: But you’re not helping.
Them: BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

I’ve spent the past few months trying to devise smart-ass responses to this statement.

• But I just want to torture people like you.
• Oh! Yes! Of course! I’m sorry! I forgot that this was all about you!
• *cuing echolalia* BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

And herein lies the frustration: Advocacy isn’t advocacy if it’s merely a synonym for self-interest. If the people you’re claiming to serve are objecting to your help, are telling you that you’re being hurtful… shouldn’t that give you pause?

I have no reason to be grateful for your hurtfulness. I shouldn’t have to grovel because you’re wearing a t-shirt with a puzzle piece on it, or because you’re raising funds to prevent people like me from existing. I shouldn’t have to look you in the eye, tear up, and utter an inflected “thanks” because it makes you feel good about yourself.

My lack of gratefulness isn’t an ASD symptom. My lack of gratefulness doesn’t mean that I’m not disabled. My lack of gratefulness isn’t impoliteness, smugness, self-centeredness, theory of mindlessness, or some other bad-sounding, mega-autism, amorphous blob thing. I shouldn’t have to wake up feeling grateful every morning, as though gratefulness is some sort of requisite pre-condition for being developmentally disabled.

Would you feel grateful for people who want to “eradicate” people like you?

Would you feel grateful for people who refer to you and your loved ones as an “epidemic,” as a “global public health crisis,” as a “disease” more prevalent than “pediatric AIDS, cancer, and diabetes combined”? Would you feel grateful for people who make a career out of representing you and others like you as creatures of pity, contagion, and fear?

Would you feel grateful for people who ask you, in front of large crowds, how old you were when you were toilet-trained? How you manage to have sex? How you wake up every morning knowing that you are you?

Would you feel grateful for people who call your parents “heroes” because they didn’t put you up for adoption?

Would you feel grateful for people who start up college groups that patronize you? Groups that claim to be your “voice,” yet never even consult you? Groups that devise activities meant “for” you or your “benefit,” yet in their very design exclude you and people like you? Make-up parties, gala balls, sorority cookouts, sensory unfriendly films, massive and crowded walks — boisterous, clamorous, noisy events, events advertised to help you, all the while raising funds to get rid of you?

Would you feel grateful for people who claim you don’t exist, merely because you’re over 21? Because you’re a woman? Because you claim to have a sexual orientation?

Would you feel grateful for people who disprove of, and ardently protest, your decision to have children? Would you feel grateful for people who work to revise custody laws so that people like you can’t single-parent or adopt?

Would you feel grateful for people who call you mysterious, puzzling, special, and heroic — because you’re you? (And, of course, being you isn’t something they’d wish on anyone.)

Would you feel grateful for people who regularly describe your body language, ways of gesturing, and ways of interacting as disturbing, inappropriate, deviant, clinical, and abnormal? Would you feel grateful for people who tell you that the way you think, act, know, and sense are all wrong?

Would you feel grateful for people who segregate you from your classmates, people who claim that who you are as a person will have detrimental effects on your peers’ intellectual development?

Would you feel grateful for people who tell you that you’re an “exception” and therefore nothing you say even matters? Would you feel grateful for people who question your diagnosis simply because you disagree with them?

Would you — should you — feel grateful for people who constantly tell you how ungrateful you are?

Would you feel grateful for these people? Seriously? Truly? Because, if that’s the case, perhaps I can teach you how to flex your ungrateful mind muscles.

**

In other news: I’m back, after a small hiatus. Academic life has been a bit hectic (understatement) these past few months.

Me holding a sign: "People not puzzles!"

I managed to maintain my composure throughout the protest, regardless of the insults thrown our way, regardless of the noise and clamor and overt hostility of the event. But then I came home and started sifting through an hour’s worth of video footage — and I broke down. Sobbing, shaking, rocking. It was so intense, all so intense.

I don’t want the next generation of autistic people to face this crap. I want it to be different for them. I want them to take pride in who they are as autistic people, and I want those who love them to take pride in who they are as autistic people. I want autistic ways of thinking, being, and knowing to be valued and validated. I want autistic people to have a say in the decisions that concern them.

And most importantly, I want there to be autistic people.

Video recaps of the protest:

Our protest attracted media attention from 10TV, ABC 6, and independent journalists. Even today — Wednesday, four days later — random strangers notice the Autistic Pride button on my backpack and exclaim, “Hey! I saw you on the news! You talked about where the money goes for that autism walk.” These things help — knowing that our four-hour ordeal has had some tangible effect, has furthered our cause.

We were featured on the ABC 6 news, and I provided a brief soundbite:

We also created our own video of the protest. Nick J. was our cameraman extraordinaire, and I did the editing. The video is still painful for me to watch — especially toward the end, while we’re chanting Autism Speaks needs to listen, and, in an alarming touch of irony, the walkers drown us out by collectively screaming O-H-I-O!

As I replay the clip, I have to cover my ears, tuck my chin down into my chest, breathe heavy. It is hard to watch, but it is a poignant example of Autism Speaks’ attempts to silence us, to refuse to listen to us, to never let autistics speak.

This post wouldn’t be complete without a thank you. Thank you. An incredible number of people, local and distant, helped us through this protest. And despite the protest’s emotional toll, perhaps even because of the protest’s emotional toll, I’m glad we did it. And I know that we need to continue doing it. Change is long and hard. But it’s happening.

Protesters face the crowd of walkers

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