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)

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

]]> http://aspierhetor.com/2010/10/13/columbus-protest-against-autism-speaks/feed/ 10 http://aspierhetor.com/2010/04/23/what-ive-been-up-to-read-dissertating-protesting/?utm_source=rss&utm_medium=rss&utm_campaign=what-ive-been-up-to-read-dissertating-protesting http://aspierhetor.com/2010/04/23/what-ive-been-up-to-read-dissertating-protesting/#comments Fri, 23 Apr 2010 23:46:37 +0000 Melanie http://aspierhetor.com/?p=700 I wake up every morning wanting to blog. And then I don’t — mostly because being ABD (i.e., being in dissertation mode) has required a rather lengthy adjustment process. I like dissertating, so far anyway. But it’s life-consuming.

Our local ASAN chapter protested Autism Speaks earlier this week. I created the following YouTube video, which documents the story.

]]> http://aspierhetor.com/2010/04/23/what-ive-been-up-to-read-dissertating-protesting/feed/ 6 http://aspierhetor.com/2009/11/02/protesting-autism-speaks/?utm_source=rss&utm_medium=rss&utm_campaign=protesting-autism-speaks http://aspierhetor.com/2009/11/02/protesting-autism-speaks/#comments Tue, 03 Nov 2009 04:04:17 +0000 Melanie http://aspierhetor.com/?p=543 A delayed post on my end, but I have my candidacy exams as an excuse. (I’ve completed the written portion, and I move onto the oral this Thursday, yikes.)

On October 11, I helped to lead an ASAN protest against the Autism Speaks walk at Ohio State’s campus. As I now have the benefit of being three weeks removed from the protest — as well as reading/hearing/seeing reports of other ASAN-led protests across the country — I feel a sense of accomplishment. I’d certainly never organized a protest before — and I’d only attended my first protest this past June, which was a disability rights protest against Ohio’s proposal to cut funding for community supports (and Ohio’s proposal to increase funding for nursing homes, ack). In June, I took notes about chanting and marching, and the chorus of Our homes, not nursing homes! is still present in my brain. (We were loud. And we were quickly hoarse.)

I suppose, on some level, I feel perpetually frustrated here at Ohio State. Our protest didn’t receive media coverage, which was a disappointment — though, to be honest, I’m not the sort of person who likes to be noticed, per se. (I’m not media material. I’m quiet-and-behind-the-scenes material.) But I also suppose the good news is that, really, Columbus’s Walk Now for Autism hardly received any media coverage itself. There was a quick spot on NBC4 (which was to be expected, given that one of their anchors has an autistic son and the station itself co-sponsored the walk), as well as a photo slideshow on The Dispatch website (the Columbus newspaper). Though my search for pro-Autism Speaks media coverage wasn’t entirely exhaustive, I doubt there was any other coverage (at least any other coverage of note). I taped all the news shows that evening, and no one else mentioned the walk. NBC4 seemed to monopolize it.

But back to the frustration: On campus, Autism Speaks seems to be everywhere. And it’s partly a matter of manpower and resources — they’ve got more than we do. By far. And our university president keeps uncritically singing their praises (to the point where we’ve drafted a petition and plan on standing on a street corner and asking passersby for signatures). I tire of seeing their flyers daily — flyers that variously portray autism as an epidemic, a puzzle, a burden on taxpayers, a fate worse than a combination of fatal situations. And I grow even angrier when I see flyers that read Got questions about autism? We’ve got answers!

Dear god. My colleagues, students, and professors might go to these people for answers?

I also love (not) how some of their past campus fundraisers have included things like Mary Kay parties, sorority cookouts at midnight, or shop-a-thons. Their events sound so autistic-unfriendly that, if it weren’t so egregious, I’d find it utterly hilarious.

I’ll end this post with photos. Several of these photos have circulated the blogosphere by now, so I’ll try and post those that weren’t featured (that I know of) in other blogs. The protest was very successful: nineteen people braved the throngs of “puzzled” walkers. We endured angry honks, middle fingers, haughty walking mothers, and entitled white men yelling, “You’re a bunch of f—ing idiots!” But we also had productive conversations with parents, and we were even thanked by autistic people who had been dragged to the walk.

This is me holding a sign reading "Autism Speaks does not speak for me"

Tim Jensen holds an orange sign that reads "Nothing about us without us"; Chris Lindemann holds flyers; Kate Comer holds a sign that reads "Diverse NOT Diseased"; and Jonathan Buehl holds a yellow sign that reads "Nothing about us without us"

Jonathan Buehl; Brenda Brueggemann with a sign that reads "Disability Rights"; me with a sign that reads "I can speak 4 myself"; Jason Smith with a sign that reads "First class autistic, second class citizen"; Justin Rooney with a sign that reads "I can speak for myself"; Meg Evans with "People not puzzles"

Jeffrey Strasser, "*Autism Speaks* against us"; Stephanie Ballam, "First class autistic, second class citizen"

Right now, our group has two big plans. The first is event-planning for Autistic Pride Day, which falls on June 18. The whole of April is dedicated to autism awareness, but the awareness preached in April tends to be of the medical sort, the sort that hyperfocuses on cure and prevention and alarmism. Our plans for the event have not been solidified yet, but we’re aiming for something that celebrates autistic culture. We’d been tossing the idea of holding an autie picnic in some prominent locale (e.g., the capitol lawn) and printing up a bunch of pamphlets that describe autism positively for passersby. We also have artists, writers, and possibly musicians in our group, and we’ve thought about asking those individuals to showcase their work, if they feel comfortable. We’ve decided to combine this picnic idea with another: we’re hoping to meet with a few state reps on the morning of June 17 and talk to them about ASAN, neurodiversity, and Autistic Pride. After that, then we’ll segue into the picnic and fun stuff.

The second item we’re planning is going to require a good deal of elbow grease: we want to visibly protest the Autism Speaks walk in Columbus on October 11. For a number of reasons, Autism Speaks doesn’t coalesce with neurodiversity activism. First of all, none of the Autism Speaks leadership positions are occupied by autistic people. Moreover, Autism Speaks frequently employs alarmist rhetorics in their depiction of the spectrum, e.g., comparing autism to lightning-strike stats, pediatric cancer, and AIDS. According to their organization, inviduals on the spectrum are inherently suffering and pitiable people who present an excessive burden to families and society. Autism Speaks’ main goal involves cure and prevention, and instead of directing their funding to support autistic individuals in their everyday lives, the group focuses on eradicating autism (or eradicating autistic people).

Our goal is for this protest to be peaceful: we hope to gather a large number of people and stand on the sidelines with large posters and signs. We also plan to write letters to the local Autism Speaks chapters, as well as their sponsors, before the event takes place. In our latest ASAN meeting, we discussed the difference between being “strong” and “militant” in our goals — strong having the better connotation. Given the events happening on the Ohio State campus recently, many of us are incredibly frustrated with Autism Speaks. Those of us who have written to them have been ignored or brushed off, and any disagreement we have with their methods or end goals is chalked up to us being so-called black-and-white or unempathetic or literal-minded disabled people who don’t know how bad we (or they, the poor families) have it.

A bit hard to read because of the wind, but the banner
is hanging from a sorority house. It has a puzzle piece
and Autism Speaks written on it, and is hanging for a
fundraiser called “flippin fuzzies.”

How are autistic people supposed to react when we see people wearing t-shirts like this? “Grateful” that people think of us as puzzles, as missing a few cognitive pieces? In what way is that not insulting?

How are we supposed to act when campus Greek life displays banners like the one above, or gives interviews like this one? Or when local grocery stores claim that a pseudo-eugenics organization aligns with their core values? I shudder at the thought that my peers, professors, and students might think of me and other autistic people as diseased, devastating, and lacking in “proper” brain function — everything a matter of deficit, deficit, deficit.

…hence, the protest.

One of the things I love about the newly vamped change.org is its actions feature: there’s a growing community of neurodiversity advocates there, mostly due to the blogging efforts of Kristina Chew and Dora Raymaker, and the Autistic Self-Advocacy Network has been able to create form letters/petitions via the change.org interface. In short, it is now incredibly easy to send protest letters to various organizations and companies. ASAN provides you with a stock letter for the controversy du jour, which you can edit, and ASAN sends the letter as an email to the desired parties. It’s pretty cool. You can view the Lindt action here.

Back to Lindt…

Apparently, their support of of Autism Speaks has been going on for a while now. And, I’ve just learned that Toys R Us has additionally been partnering with Autism Speaks. Starbucks began printing blurbs about Autism Speaks on its coffee cups two years ago, and Hulu receives some of its sponsorship from Autism Speaks.The list of Autism Speaks’ BFFs seems never-ending.

Autism Speaks has a tremendous amount of corporate and media support. It’s little wonder that the autism controversy isn’t even rendered as a controversy in popular discourse. When I try to explain the concept of neurodiversity, for instance, to someone new to the autism fold, a typical remark resembles the following: “That’s stupid. Why wouldn’t someone want a cure?”

Autism Speaks’ toehold on autism discourse in popular media de-de-de-controversializes autism, de-de-de-ideologizes autism, re-re-re-pathologizes autism, and re-re-re-silences autistics. (And yes, I tripled the prefixes on purpose — something, anything, to effectively represent my emphatic tone here.)

Additionally, because of cure-minded groups like Autism Speaks (they aren’t the only one with media clout), neurodiversity comes across as some sort of fringe group of fame-seekers. Last year’s New York Magazine feature on the movement sported the following byline: “A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded [emphasis mine].” Moreover, a fairly recent Good Morning America segment on neurodiversity — which featured wonderful spots with Ari Ne’eman and Kristina Chew — ended with an incredulous Diane Sawyer showcasing both her doubt and her journalistic ethos.

I think the frustrating thing here is that, to the public masses, neurodiversity seems so new, so “out there,” so contained and so rare. Neurodiverse advocates are either painted as too disabled or too autistic to understand how badly they’re “suffering,” or as too high-functioning to know what “real” autism is. It’s a frustrating catch-22, to cite the novel that my book club recently finished.

Autism Speaks has launched a series of college/university chapters, a program that started at the beginning of the 2008-2009 school year. My university, Ohio State, is currently in the process of forming its own chapter. Over the past month, three people have tried to “recruit” me for it. My unabashed disgust for Autism Speaks notwithstanding, I think I’ve been tactful and rhetorically “appropriate” in my conversations with these people — conversations in which I’ve tried to communicate why Autism Speaks is a harmful organization. Unfortunately, my appeals have not been persuasive thus far.

In December, an NT grad student in the aspie group I belong to forwarded me a notice from the Autism Speaks faculty advisor. My grad student friend knows of my disdain for Autism Speaks and suggested I write the faculty advisor, or possibly consider joining the group to provide balance. I opted for letter-writing, of course, because in no way do I want to be affiliated with Autism Speaks. In my letter, I explained neurodiversity and Autism Speaks’ problematic foci on cure and prevention. The faculty advisor, in response, said that although she empathized with my position, the group would maintain the vision of Autism Speaks.

In the faculty advisor’s “defense,” I’m fairly certain that she was well-meaning in her statement and that she has nothing but so-called “good intentions” concerning her involvement with Autism Speaks. I think that many people involved with this organization, as harmfully misdirected as it is, have good intentions despite their woeful ignorance. However, the moment I saw the word empathize in her letter, something in me snapped. Obviously, she was not empathizing with me, and her remark came across as quite patronizing.

I’ve reached the point in life — in my growth as a person who has accepted and embraced being autistic — where the “good intentions” excuse just doesn’t cut it for me any more. If a bunch of autistic people are telling an organization that their group’s vision is hurtful, harmful, and unrepresentative, and they just keep chugging along obliviously, how does that make them well-intentioned? Or empathetic for that manner?

Empathy is such a charged, loaded word in autism discourse. By popular autism definitions, I am pathologically (and negatively) unempathetic. The inverse of this statement, if we herald the lovely NT/autistic binary that so many people love to herald, is that NTs are normatively (and positively) empathetic. Hence, the assumption is as follows: I can’t understand their minds or motives, but they can clearly understand mine, and, moreover, they’re so in tune with me that they understand my mind and motives better than I do. Empathy becomes the ultimate bodily displacement: the dominant discourse-wielders fit better in my shoes than I do.

In my graduate class on digital literacies, we’ve been exploring various research methods, one of which is discourse analysis. Our professor assigned us a book chapter by Thomas Huckin, “Critical Discourse Analysis and the Discourse of Condescension.” I’ve found myself employing his method of analysis on most everything I’ve read for the past five days — especially conversations concerning Autism Speaks’ role at my university. In his piece, Huckin shares correspondence between himself and a Utah state senator. Huckin wrote a letter in protest of the legislature’s plan to cut the higher education budget in order to fund highway construction (164). In response, the state senator used a sickeningly and politely patronizing tone, a tone Huckin defines as being discursively condescending:

“…the discourse of condescension has three main characteristics: First, it contains nothing overtly critical or negative, and often proffers insincere praise; second, it assumes a difference in status and worth between speaker and listener (cf. Goffman on ‘alignment’); and third, this assumed difference is disputed by the listener.” (167)

In the spirit of Huckin, I’d claim that the response I received — as well as Autism Speaks’ general behavior as an organization — is mired within a discourse of condescension. For example, in response to my embrace of a social approach toward disability, as well as the list of problems associated with Autism Speaks’ “vision,” the advisor wrote:

Thank you for your kindly worded letter.

[#1: polite praise of my original letter]

I am very familiar with this stance and I completely empathize with your perspective. However, this group will maintain the same standards and vision as that of Autism Speaks.

[#2: The power differentials are firmly rooted in an appeal to empathy. As described above, within the context of autism discourse, claims toward empathy invoke a rhetorical power play. She knows that, as an Asperger's autistic, I am supposedly "mindblind," and that, as a neurotypical, she supposedly has mental ESP. By invoking empathy, she dons discursive condescension and places her perspective regarding autism on a pedestal far above mine: she supposedly has the cognitive capacity to understand what it's like to be an autistic person who is continually told that she's an empty shell who's unworthy of existence, and, because she supposedly understands what it's like to be thought of as a mindblind, burdensome human being, she can segue into the "however" clause and uphold Autism Speaks' combative ideology.]

The letter goes on from here: she continued by saying that Autism Speaks was “moved” by the October 2008 campus walk, and she also expressed her desire for greater community involvement and “working together” with other campus autism groups. However, #3 arises in that I, as the recipient of this letter, dispute our postulated difference in “worth” as “functioning” humans — she asserts a hierarchy of empathetic worthiness; I don’t. In this letter, the writer employs rhetorical tools common to (neuro)typical autism discourse, and she employs those tools to make light of her opposition’s opinions and experiences.

Frequently, when I suggest that autism doesn’t need a cure — or that many autistics don’t want a cure — I’m greeted with the following retort: “You shouldn’t be cured. You’re high-functioning.”

Ah, yes. I’m a high-functioning autistic. As a result, unless I agree with Autism Speaks’ video manifesto, I don’t count.

There are some huge problems with this high-functioning/low-functioning binary. Namely, it’s a medical construct, and, as such, both sides of the binary are frequently used to suit the purposes of people who aren’t autistic. We don’t have a stable definition of what high-functioning is, again, because it’s a social construct: if one is able to speak, is she high-functioning? If one is able to attend college, is she high-functioning? If one is able to make eye contact, is she high-functioning? If one can speak but can’t work, can cook but can’t drive, can read existential philosophy but can’t add single digits, can hug on demand but can’t stop a head-banging binge, can mimic smalltalk but can’t modulate the volume of her voice, can pass in short bursts but can’t refrain from hand-flapping, is she high-functioning?

I’ve been told that I not only seem to have high-functioning autism, but high-functioning high-functioning autism, as if my new aim should be for threesies — high-functioning high-functioning high-functioning autism. How wonderfully echolalic. (If I say this three times out loud, do I have to move back two steps?)

The Autistic Bitch from Hell wrote about the problematics of the HFA/LFA divide in a 2006 blog entry. She suggested that if we take any other marginalized group and insert “high-functioning” as an adjective, wars ensue. The examples she presents are as follows:

“She is a high functioning woman; unlike most women, she can live independently.”

“He is high functioning for a black man; he can keep a job.”

When people say, “Wow! You’re smart for someone with Asperger’s,” I never know whether I should 1) smile meekly, or 2) punch them in the face. I usually go with gut feeling #1 because I’m polite for a person with Asperger’s. (As if rudeness were one of the DSM IV criteria for Asperger’s.) </sarcasm>

Why all this compare and contrast? Why one extreme or the other? Why shove diverse individuals into either/or categories? In essence, functioning level involves the extent to which an autistic’s personality traits match up with the expectations of particular neurotypicals. When others denote me as a high-functioning autistic, there’s still an assumption that I’m malfunctioning, because no matter how “high” I am on the grid, I’m never just plain functioning. And when autistics are coined as low-functioning, the assumptions made involve malfunctioning on warp overdrive. If we’re ever going to remove autism from the funk of puzzlehood, then we need to stop with these malfunctioning robot allusions. It’s as though we’re labeling some autistics as gaming PCs with a few missing processor chips, and we’re labeling other autistics as ribbonless, keyless, cordless typewriters circa 1883. HFA and LFA are attempts to technologize autism — and not positively, either. Like many an aspie, I love my computer, but I certainly don’t empathize with it.

So, by this warped HFA/LFA logic, if I’m the hottest PC from Best Buy who happens to be short a few RAM sticks (and also happens to have a processor from, say, the 1990s stone age), then how can I claim that 1883 typewriters don’t want a technological upgrade? I mean, sure, I’ve got a few screws loose myself, and even though I’m slow and sometimes emit weird smoke or freeze with the blue screen of death, I’m an otherwise quirky machine who generally gets the job done. I’m worlds away from that horribly damaged typewriter.

This machine metaphor is horrid and inaccurate, but it’s the mental picture I have when I hear people discuss autistics and functioning. And it perpetuates division upon division, stereotype upon stereotype.

It saddens me that some of the more prominent writers in the autistic community — Donna Williams, Temple Grandin, Thomas McKean — take this approach. Donna Williams, author of Nobody Nowhere and several other books, often writes of her world before language and uses this language-less distinction to separate the auties from the aspies. And though I don’t discount the diversity of the autism spectrum, and nor do I discount the fact that Williams’ autistic experiences are different from my own, I don’t see the utility of an aspie/autie or HFA/LFA division. I also have to wonder if what Williams describes as a language-less realm is interpreted as, indeed, languageless by other so-called LFA auties: the person who immediately comes to mind is Amanda Baggs.

Of course, I don’t want to re-define or question Williams’ experience. I can’t pretend to know her past and present worlds. I do wonder, though, how it is we’re defining language when it comes down to the LFA/HFA divide — because, certainly, not speaking or not understanding verbal speech shouldn’t render one languageless. (What about hand gestures, or repetitive movements, or grunts and moans? What about sign language? What about typing? What about FC? What about self-injury?)

Additionally, I don’t think that this so-called language barrier between aspies and auties should define how we advocate as a community, nor should it split us into two opposing communities. According to the DSM IV, all autistics, by medical definition, have “impaired” language/communication, whether verbal or non-verbal.

This binary brings me to an autistics.org article, Who Can Call Themselves Autistic? Here, the authors respond to Thomas McKean’s 2006 “A Danger in Speaking.” McKean writes of the autism conference circuit, denouncing speakers who have self-diagnosed as autistic and also casting suspicion on those who were officially diagnosed in adulthood. McKean reasons that the self-diagnosed and the adult-diagnosed have little to no place in the conversations surrounding autism. Although McKean poses some valid concerns about self-diagnosis (after all, we don’t want autism to become a teenage internet fad), what he doesn’t acknowledge are the obstacles certain autistics face in obtaining diagnostic testing. Those who are “high-functioning” adults have typically been misdiagnosed with disorders that never fit, or have been institutionalized or wrongly medicated because the “autism” of 1993 wasn’t the “autism” of 1994. Moreover, insurance companies rarely cover autism-related expenses. Testing can cost anywhere from $600 to $5000, depending on where one lives. Additionally, both age and gender complicate autism diagnosis: adults learn to compensate for their autistic “oddities,” and women often present as “milder” cases. Additionally, very few specialists are equipped to deal with autism diagnosis, some even believing that only emotionless, monotoned boys age seven or younger can be diagnosed with Asperger’s.

In short, McKean claims that self- and adult-diagnosed autistics haven’t “suffered” like he has, yet he ignores the fact that these autistics have “suffered” in ways that he hasn’t. Moreover, in Asperger Syndrome Employment Workbook, authors Meyer and Attwood maintain that official diagnosis should never be imposed upon autistics: rather, those who do not wish the stigma of a medical label can accurately claim autism if their self-diagnosis is “peer-confirmed”:

Every AS person deals with diagnosis and disclosure issues in a unique way. If you are self-diagnosed, your diagnosis should be validated through the comments of other adults with AS. This is called ‘self-diagnosis, peer-confirmed.’ Many self-diagnosed AS adults refrain from diagnosis for as many reasons as there are individuals. (33)

The self-diagnosis debate isn’t something that I’d like to get into any further, though I do offer the argument that any person who identifies as autistic is also self-diagnosed, whether officially diagnosed or not. I see self-diagnosis as self-identification and official diagnosis as being identified. (And, yes, in case people are wondering, I’ve been officially diagnosed, unofficially diagnosed, self-diagnosed, misdiagnosed, and peer-confirmed — and not in that order. How many hoops must one jump through to really be autistic? Or maybe the real hoop is the “cure” hoop?)

McKean’s logic, as described by the auties and aspies at autistics.org, is this: if you don’t want a cure for autism, then you need to prove that you’re autistic, because it’s 99% certain that you’re not really, truly autistic.

Questioning someone’s diagnosis is part-and-parcel with the HFA/LFA binary. These designations fail to account for the spectrum that is autism, a non-linear spectrum, at that. And, of course, if we truly want to dismantle this “functionalization” of autistics, what do we say to those autistics who do the opposite, the ones who claim that autistics who want cures or hate autism aren’t “real” autistics? Writes McKean,

What you do not have a right to do is to claim that a cure is wrong for everyone. Until you have met everyone with autism in the world, until you have gotten to know them, you simply cannot make a blanket statement like this.

My response to this, which is always evolving, causes me to wonder if it’s actually cure that such people are after. The dialogue that GRASP tried to start with Autism Speaks on the cure debate is one such illustration of the cure confusion. When autistics reference cure, do they desire to become entirely new people, the sort of brain-transplant cure that neurodiverse activists decry? Or, do they mean societal acceptance, or accommodations, or reduction of one “symptom” such as sensory overload, or medical treatment? Because if autism truly is what modern science describes it to be — genetic, neurological, and brain-based — then, indeed, a cure for autism would involve major brain rewiring or prenatal testing and abortion.

I have more to say, but this post is too long. So I’ll stop, muse some more, and come back to this.