The following is the transcript from remarks given on 4/24/2019 at the Stop The Shock Washington D.C. Wait-in hosted by The Autistic Self Advocacy Network.
Hello, my name is Laura Hatcher. My son, Simon, and the rest of our family are members of Little Lobbyists. We support Simon in his self-advocacy as a person with disabilities and complex medical needs, and we advocate together to create the kind of future all our families deserve - a future that does not include electrical shock for people with disabilities.
I’m also a college professor and creative consultant and I mostly work from a home office. Sometimes it gets a bit too quiet, so I put the TV on for background noise while I work. One morning fairly recently I caught a bit of a talk show – it’s called “The Doctors” – and I was surprised to hear one of their topics for discussion was the electric shock “therapy” of people with disabilities in use at the Judge Rotenberg Center.
We don’t often hear issues of disability rights in mainstream media so I was pretty interested to see how this discussion would go. As the host introduced the segment and the camera panned the audience I was glad to see the co-hosts and audience members were genuinely surprised and appalled to learn that this barbaric abuse is happening here, in the United States, in 2019.
Then, following the formula of shows like this -- they went on to question the so-called “experts” to learn more.
First, they asked a psychiatrist from a well known university about the practice, who firmly denounced it as torture and pointed out that there are myriad other far better treatment options available to individuals with disabilities and their families.
Next, predictably, they asked a representative from the Judge Rotenberg Center why - if the first specialist was correct -- the JRC persisted in its use of electric shock devices.
The JRC Clinical Director summarily dismissed the United Nations report stating that the use of Gradual Electronic Decelorators (GEDs) is torture. He claimed, that despite evidence to the contrary, they no longer really hurt people. He even claimed that they’d had some success with really tough cases, for problems nowhere else could deal with. As he spoke, I noticed that the way he talked about the people he was supposed to be caring for was dehumanizing. To him, they were cases not community members. They were big, scary problems -- not real, vulnerable people.
The co-hosts and audience members listened to this exchange with furrowed brows. They acknowledged that this was indeed a difficult problem. And then they cut to commercial.
I hoped that, when the show resumed, they’d have included a person with disabilities on their panel to respond. To provide a much needed first hand account of the damage abuse masked as discipline or, more insidiously, therapy, has. To explain that it does not heal anything or anyone. Instead it causes fear, anxiety, and lasting trauma.
But that didn’t happen. Instead they started on a new segment about mites living in eyelash extensions.
“The Doctors” never asked a person with Autism, like my 13 year old Little Lobbyists Simon, who has complex medical needs and physical and intellectual disabilities, what they really needed to understand. They never asked families like mine if the JRC clinical director was disconnected and dehumanizing in his assumptions about our loved ones.
If they had, they would have learned that just being secluded by an aide in school when Simon was in the first grade led to months of acute separation anxiety for him - communicated to us through sudden, painful meltdowns; and to years’ of guilt, fear, and an inability to trust outside caregivers for us, his parents who love him.
They might have learned that many families like mine are desperate, but not in the way described by the JRC clinical director. We are desperate to have the lives of our loved ones valued. To be counted as full members of our communities - the sort of people whose opinion would be worth getting when discussing their lives on a mainstream talk show.
No, they never asked. So we just have to tell them.
We need everyone -- even the talking heads, doctors, and so-called specialists – to recognize that people with disabilities are people and that “behaviors” are communication. We need them to be aware that there are insufficient resources to support people with disabilities in their homes and communities. We need everyone to understand that treating people to improve their health and well-being is NOT the same as shutting them away and shocking them into submission.
We are here to remind the FDA that every day they delay banning the use of electric shock another person is subjected to treatment the United Nations has classified as torture. We are here to remind the United States of America that the imprisonment and torture of disabled people is wrong.
I sometimes think our government administrators have a lot in common with talk show hosts. They pan the audience for reactions but rarely ask for the input of true experts -- the people impacted. They observe commercial breaks and hope we will simply tune out.
But we cannot change the channel. I cannot bear the thought of a person like my son being tortured for simply being who they are by anyone too lazy, incompetent, or cruel to understand their needs. I know you can’t either.
People with disabilities are still being tortured today. Every moment we are waiting for the FDA to ban this practice is a moment too long. It is time to stop the shock.
To learn more, visit: www.autisticadvocacy.org/stoptheshock/