Sunday, March 1, 2015

Celebrate the Small Victories: AutismSpeaks10

Autistic Advocates Silence Autism Speaks' Self Congratulatory 10 Year Anniversary Party

This last week and a half has been a busy one for autism advocates. On Wednesday, Feb 18, Autism Speaks asked their Facebook and Twitter followers to tell them how AS has touched their lives in the last 10 years using the hashtag #AutismSpeaks10.

Well, they really ought to know better after the disastrous #mssng campaign, but they did it anyway. 

Autism Speaks managed to find a small number of supporters who dutifully replied that AS had made their life better. The tweets tended to be like those vague, half-hearted attempts at being part of the group when you just want to play along, but you don’t actually understand what you’re supporting, or who did a good thing.

By contrast, Autistic advocates took over the hashtag, adding their own #ActuallyAutistic tag, and spent the next week or so destroying the public myth that is Autism Speaks. The tweets from autistic advocates were more passionate and specific. It was clear these were personal stories that mattered, not someone dutifully replying to a request for submissions.

Autism Speaks did what little they could to cull the rare glowing Tweet, and retweet it. But soon that proved fruitless, so they started using the #AutismChampions #AutismChampion tags. Naturally, we followed.

For nearly two weeks, autism activists have been speaking about against Autism Speaks using the hashtags #ActuallyAutistic, #AutismSpeaks10, #AutismChampions, and #AutismChampion. It was a sight to see. I think Autism Speaks still, after all these years, underestimates us and doesn't realize our commitment to seeing this through.

The Media Reports

A small number of media outlets picked up the story. On Feb 23, BuzzFeed ran a piece called Autistic People Spark Twitter Fight Against Autism Speaks . A few days later, Autism Daily News published Neurodiversity Advocates Use #AutismSpeaks10 to Express Their Anger. And then IT happened.

MTV Tries Their Hand at Reporting

The whole story is captured perfectly on the Raising Rebels Souls blog. To summarize, MTV contacted Amy Sequenzia via the Boycott Autism Speaks' Facebook page and asked for a quote as part of the story they were doing on the #AutismSpeaks10 hashtag takeover.

Amy agreed to work with them if quote would be used in full and not get edited. MTV agreed, so Amy provided a good quote for the interview that talked about how Autism Speaks has silenced autistics all these years. She went also touched on the hateful, fear-inducing language they use and their connections to torture at the Judge Rotenberg Center.

The piece was posted briefly, and then the part of the quote about the Judge Rotenberg Center was edited out. Amy and others cried foul. MTV responded by pulling the entire article.

So now, on top of the 4 hashtags we have been owning, advocates are also tweeting to @MTV, @MTVnews, and @everydaycaitlin, demanding an answer. 

As of yet, none has been forthcoming.

Our Weakness is Our Strength

Some might look at this as a defeat. "They" did it again. They silenced us again. The biggest, the strongest, the one with more money, always wins.

I would ask that my fellow advocates look at this though a different lens. I view this as a small victory. The fact that MTV found the story interesting enough to pursue in the first place is progress. And then they actually published the story with a very damaging, very controversial quote is progress. We can only guess that MTV was bullied into taking it down. And that too is progress. Because it happened in public. All of this happened out in the open where everyone can see the truth. Everyone witnessed first hand Autism Speaks ignoring us in #AutismSpeaks10 hashtag, and then moving to a new tag, and then apparently scaring MTV enough into dropping the story.

All of this happened while people were watching. Many people who, for perhaps the first time, saw that we are telling the truth, not just a bunch of Internet trolls trying to "ruin a good thing."

I encourage Autistics to keep at it. Keep speaking out. Keep speaking to the media. Keep screen-capping everything important, so we have proof our words are true.

And celebrate those small victories. Over time, those small victories add up to big victories.


Autistic People Spark Twitter Fight Against Autism Speaks
Virginia Hughes, Feb 23, 2015, BuzzFeed

Neurodiversity Advocates Use #AutismSpeaks10 to Express Their Anger
Laurel Joss, Feb 27, 2015, Autism Daily Newcast,

Why @MTV Stood With #AutismSpeaks10 Instead of Autistics
Heather Clark, Mar 1, 2015, Raising Rebel Souls

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