My son Sam is a superstar.  He’s outgoing, athletic, loves basketball, sings country music, is learning how to play guitar, and he’s enthusiastic about comedy, conversation, and history. In 2009, I learned Sam was autistic. With a background in social work and child welfare, I imagined I was well prepared. Instead, I had a lot of work to do. 

Sam has blonde hair and is wearing a sweatshirt. He is outdoors, looking at the camera and smiling.

Throughout elementary school and 5th grade, Sam was thriving and enjoying life more than ever. My superstar became a high scoring shooter on a rec league basketball team and was well loved in the community for his outgoing and friendly greetings and comedic conversations.

When Sam started middle school, all of the changes increased his anxiety, and he began to shut down during math class. Unfortunately, his teachers didn’t recognize his high level generalized anxiety, including a physical somatic response, even though it was expressly mentioned in the IEP.

In March of 2015, Sam’s anxiety was at peak level, and he refused to go into the math classroom. At first, teachers offered him time in the “resource room” with the behavioral interventionist. While being escorted to the resource room, Sam “eloped” – he broke away from staff and was immediately restrained on his back on the floor, by four adults – only one of whom had behavior intervention training.

Here is what Sam had to say about this experience five years later (for the full conversation, see  the video):

Daya: So when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.

The day after that one-time restraint, I lost my child as I knew him. Sam couldn’t speak, couldn’t feed himself, was aggressive and self-injurious, and appeared to have regressed to a pre-kindergarten reading level after testing at the 4th grade level prior to the restraint.

Restraint and seclusion changed our entire family’s life, in fact, set it on fire for years. What followed were three years full of aggression, fear, and anger. Sam needed psychiatric medication for the first time ever. He became destructive and even lashed out physically. He was changed overnight because the teachers and staff I trusted to care and educate Sam didn’t have the tools they needed to appropriately and empathetically help him through a mental health crisis.

It’s clear that we need legislation to prevent more children from being harmed in school. On May 26, 2021 Congress unveiled the “Keeping Students Safe Act” to protect students from dangerous seclusion and restraint discipline practices in school introduced by Senators Murphy (D-CT), Murray (D-WA), Casey (D-PA), Durbin (D-IL), Kaine (D-VA), Warren (D-MA), Sanders (I-VT), Baldwin (D-WI), Van Hollen (D-MD), Brown (D-OH), Blumenthal (D-CT), Wyden (D-OR), and Duckworth (D-IL):

“The Keeping All Students Safe Act would make it illegal for any school receiving federal taxpayer money to seclude children and would ban dangerous restraint practices that restrict children’s breathing, such as prone or supine restraint. The bill would also prohibit schools from physically restraining children, except when necessary to protect students and staff. The bill would better equip school personnel with the training they need to address school-expected behavior with evidence-based proactive strategies, require states to monitor the law’s implementation, and increase transparency and oversight to prevent future abuse of students.”  

Today, even during these Covid-19 days, Sam is beginning to thrive again. He’s now in the 11th grade, and has mostly rebuilt the skills he lost while he navigates his world academically and socially with autism. He continues to play basketball (when there’s no pandemic), and has regained most of his verbal skills. He’s a growing self-advocate who wants to help ensure laws are passed to make restraint and seclusion illegal. 

Once again, in Sam’s own words: 
Daya: So what would you tell Congress about restraining in school;
remember we're talking about the bill called Keeping All Students Safe Act.
So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.

It’s our wish that other families be protected by federal law from such a traumatic course of events. We have all been changed by this experience, and in hindsight, the trauma caused by the restraint could have been prevented by such easy and deliberate choices such as employing better practices in crisis intervention – just as KASSA provides. Federal legislators have introduced restraint and seclusion bills since 2009! The Keeping All Students Safe Act was first introduced in 2011, with  iterations reintroduced in 2015 and 2018 without passage in the Senate. It’s time to see this pass!

To advocate for Keeping All Students Safe Act, Sam recounts the story of his restraint and seclusion.
Transcript:
Daya: Alright, how old were you when you were restrained?
Sam:  12
Daya: what grade was that?
Sam: Sixth.
Daya: How come you were restrained?
Sam: I was being dangerous and ran away.
Daya: Oh! You ran away. 
Sam: Yeah.
Daya: Okay so you ran away from where?
Sam: The resource room. 
Daya: Why were you in a resource room?
Sam: Because I didn't want to go to math with Mr. Parker.
Daya: What were your feelings about math?
Sam: Hard. 
Daya: Okay, so when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.
Daya: All the stuff you learned from kindergarten, right?
Sam: Right. 
Daya: So what would you tell Congress about restraining in school; remember we're talking about the bill called Keeping All Students Safe Act. So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.
Daya: Okay, well thank you very much for this interview. I appreciate you talking about such a hard thing. 
Sam: Bye-bye.

---

Daya Chaney Webb is a Little Lobbyists Ambassador and Sam’s mom. She has a background in social work and child welfare, and is an expert in special education law and IEP development and implementation. She has helped other parents as a volunteer family advocate. The absence of legislation protecting kids with disabilities in school led her to lobbying work, most recently with The Alliance Against Seclusion & Restraint as Legislative Director.

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.

Laura giving her speech at the Stop the Shock wait-in.

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/

[Image description: An illustration of a construction site-style metal warning sign. At the top, white text on a red background reads: ATTENTION! Below that is large text which reads: “PEOPLE WITH DISABILITIES ARE STILL BEING TORTURED AT THE JRC.” Next to the text is a warning symbol depicting a person being electrocuted against a yellow triangle background. Below the warning symbol is text reading #StopTheShock. There is a post-it note on the sign that says #WeAreStillWaiting.]