why i #boycottautismspeaks by Diary of a Mom

This post originally published at Diary of a Mom


{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping them.

(I listened to autistic adults.)

And I asked Autism Speaks to listen too.


And again.

And again.

They refused.


And again.

And again.

And again still.

I wanted so badly to believe that they had the capacity to evolve. To listen. To recognize the travesty (and danger) of demonizing autism and, in so doing, dehumanizing and further marginalizing autistic people. I wanted to believe that no one could really be so callous as to dismiss (and, at times purposefully silence) the voices of those for whom they claim to speak.

I tried hard. I hung on for far longer than I should have. I wanted to believe. But misplaced optimism isn’t going to help my girl to fight the stigma that Autism Speaks fortifies every time they describe her and her brethren as missing, lost, gone, bankrupt, broken, part of a tragic epidemic which is stealing our children.

My daughter is autistic. Autism is not an accessory for her nor something that can be excised from her being. It informs and affects and creates her perceptions of the world. It is the filter through which she tastes and smells and hears and sees and feels EVERYTHING. She is not only autism, certainly, but autism is as big a part of her identity as my gender is part of mine.

You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden” any more than you would lessen the blow of saying that women are a burden by saying, “Oh, but not YOU, just your femaleness.” You can’t separate with words what is not separable in reality.

I often tell a a story that I heard at a conference many years ago about a young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. The young man, quite logically, put a gun to his head to kill the bad guy.

The destruction of Autism is the destruction of human beings. Autism Speaks’ goal of eradicating autism says to my child, “If we could have helped it, you would not have been born.” As her mother, I cannot let that stand.

I continued to work with AS for a long time. They were too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I’d still like to believe that I did. I stuck around because I had to do everything in my power to help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make Autism Speaks understand the irrevocable damage that they were doing to the people whom they purport to represent.

I couldn’t.

And that is why, despite my best efforts, I #BoycottAutismSpeaks.

Because my child is not lost. She is not gone. And she sure as hell is not a burden.

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