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.

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)

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.

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.

[For more details about the meeting, you can read the ASAN-Central Ohio blog.]

I’ve also [finally] finished writing my program of study, a massive document that describes my field and focus areas and contains my reading lists for exams. I just found out that it passed, and I’ll post the document here in the next few days as it’s quite relevant to this blog.

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.