Tag: Autism Speaks

Columbus protest against Autism Speaks

On Sunday, October 10, I joined forces with a dozen individuals and protested the Autism Speaks Walk for Autism at Ohio State. We faced 18,000 walkers, several of whom screamed at us, berated us, tried to exact physical harm upon us. One walker had to be physically restrained by a friend and a walk official; and at another point, a car full of walkers swerved at our faculty advisor in a mock attempt to hit her, and they drove off laughing.

Me, a white woman with blonde hair, holding a blue sign that reads People not puzzles. There is also a light blue puzzle piece crossed out in red on the poster.
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
Protesters face the crowd of walkers

What I’ve been up to. (Read: dissertating, protesting)

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.

Protesting Autism Speaks

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
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 “Nothing about us without us”