Today is the FDA hearing for the Judge Rothenberg Center on the issue of using aversive shock therapy to correct behavior in people with autism.
The things coming out during this hearing make me sick. Use of shock therapy on people with disabilities is not new. There is a long history of the use of shock therapy on people with many kinds of disabilities without their consent.
In this case, details such as use of this kind of aversion therapy on children as young as 9, the use of shocks administered up to 140x per day, and the fact that these treatments can leave 1st degree burns on the patients are all disturbing to me. The fact that the BRI Parenting Organization has chosen to testify in defense of these treatments makes me ask the question of what kind of parent would allow this to be done to their child.
In case you had illusions about what I’ve just described – this is torture to correct behaviors like stimming, or raising arms above ones head. This is torture to make people conform to a physicality which is completely unnatural to them. It’s the same as the quiet hands philosophy of autism treatment. Make the external displays of autism go away so that the patient looks normal for the sake of everyone else, leaving emotional scars for years.
This hearing also raises my feelings once again about Dan Savage’s play “Miracle!” a rewrite of “The Miracle Worker”, the play about Helen Keller and Anne Sullivan as a drag show. Bear with me, I’ve got a reason for bringing this up.
The first fifteen minutes of the show are about Hellen Stellar, but she doesn’t appear on stage. When she comes onstage to perform in the drag show, she appears out of control – animalistic – and then she goes towards the edge of the stage. That’s when the sound of an electric shock being delivered reverberates through the theater. I feel like I’m about to vomit, cry, or both. Probably both.
People who are blind and deaf have been abused due to their perception as being unable to behaviorally conform in the way that this testimony encourages people with autism to do.
A room full of adults laughed at the image of a disabled person being shocked with a dog collar in order to make her do what they wanted.
The difference, is that I don’t know any of the people who have worked at the JRC. But as a child, I knew Dan Savage. Dan Savage knew a deaf blind child, and yet he still thinks of this as something to mock.
I realize that I’m talking about a man who never has given the disability community much dignity to begin with, but you would think if you were me, that this would be a line. That when you think of shocking a blind-deaf woman, you would think back to the tiny girl running around Belltown, not a comedic relief point.
Electric shock is not a comedic effect. People with disabilities do not need to be behaviorally altered. We are humans, and we are rightfully afraid of what happens if the FDA says that this is behavioral therapy that is acceptable in the eyes of their institution. Stimming is normal behavior. Even if you’re not disabled you might have a stim. I am not autistic, but I d have an anxiety disorder, and when I begin to have a very serious anxiety attack I begin to stim. It is a useful marker of when I need to change the scenery.
We’ve got to change social perceptions of this “treatment” in order to protect people with disabilities. Making this kind of treatment funny only serves to further stigmatize people with disabilities, and demonstrate that we need to be controlled.
I hope the FDA makes the correct decision in this hearing – I hope they make the correct decision because the implications of allowing certain members of the medical profession to continue torturing people with disabilities is a step backwards in the fight for disabled civil rights.
People with disabilities deserve to have the right to say no to their own treatment, and they deserve not to be tortured to “get better”.