CANTON, Mass. — With a sign in hand, a 16-year-old Massachusetts resident with autism stood along a busy Canton road just outside a facility still using electric shock devices on people like him.

“This is a cause I care very much about because it’s people like me that are being targeted here by these ‘therapies,'” Jacob Levy told MassLive last week.

The Judge Rotenberg Center (JRC), a day and residential facility for those with disabilities in Canton, has become known across the country for using electric shock devices, which are attached to the residents at all times, on people demonstrating self-injurious or aggressive behavior.

It is the only facility in the country to use them and has been the center of many advocates’ concerns for decades.

The JRC has said the device is “lifesaving” and that it is important it “remains available to those for whom all other treatment options have been tried and failed,” the JRC and the JRC Parents Association wrote in a statement after a 2023 court ruling that allowed the devices to continue to be used.

The facility has said that its clients have had behaviors that result in “profound physical injuries including blindness and mutilation” prior to using the devices. They have also injured family members and loved ones.

“Under the care of JRC’s highly specialized medical team, individuals whose lives have been marked by over-medication, physical and mechanical restraint, and social isolation can learn to live with others in homes, be gainfully employed, and safely live in the community,” a statement read.

As of 2024, there were more than 300 people who attend or live at JRC, and about 55 people were approved for the devices.

But some of those behaviors also help people with autism, Levy said. This can include stimming that is use to help regulate when people are feeling disregulated.

“They’re modifying necessary behaviors. Behaviors that are necessary to autistic people,” he said. “(Stimming) is necessary to sometimes stay calm and to stay in a world that’s not made for you, to stay grounded.”

‘I did not consent’

In 2023, Jennifer Msumba, who is on the autism spectrum, spoke to the state Legislature’s Joint Committee on Children, Families and Persons with Disabilities during a hearing about her experience attached to the devices at JRC.

She said she came to JRC with these “very strong self-harm behaviors,” including putting her head through windows, she told the committee. While her behaviors stopped while she was on the device, her “behaviors weren’t fixed.”

“They were just manifested differently, into explosions. I would hold it in and then all of a sudden explode,” she said.

She lived at JRC from 2002 until 2009 and was on the shock devices for all seven years. But it wasn’t just the electric shocks that she said traumatized her.

She also was denied food and “was one of those stripped of all my clothes, tied to a restraint board and forcefully scrubbed while male staff watched on the video monitors.”

“I did not consent to any of this treatment,” she said.

She has since left to live at a different placement, which she said has helped her. But when she arrived, she went back to her old self-harming behaviors.

“Instead of hurting me, they helped figure out why these things were happening and took the time to do so. They helped me learn to cope and self-regulate, (and) also allowed access to medication that I really needed,” she said.

‘They just want you to be a robot’

In 2021, Msumba released a book, “Shouting At Leaves” regarding her time at the center. She also shares some of her story on TikTok.

“I have a real life now,” she said.

Another former JRC student was also at the protest held by the #StopTheShock Coalition last week.

Krista Cormier, now working as a peer specialist, lived at the center from 1998 to 2000. Although she wasn’t on the electric shock devices, she saw other students who were. Even that had lasting effects on her.

“It’s like being a Vietnam vet watching someone out in the field get hurt,” she said.

Prior to being at JRC, Cormier said she was on too many different medications and the idea of being able to get off of them sounded great.

However, after going unmedicated she began having symptoms of bipolar disorder. Something that wasn’t addressed at JRC.

“My first like manic psychotic episode was seen as a behavioral episode and that lasted for months,” she said.

While at JRC, they used a mechanical restraint chair to attempt to control her behaviors, she said. They told her parents that the chair would only be used for aggression, self-injurious behavior or property destruction.

She said in reality, that looked like getting in trouble for swearing whether it was while punching someone or just after stubbing her toe. It was also used when she said no to homework or doing chores — a common teenage behavior.

Plus, she said, she never actually learned how to address all her feelings.

“I walked out here like a pressure cooker, not knowing how to handle my feelings,” she told MassLive. “They didn’t teach you how to handle anxiety, anger, anything. They just want you to be a robot.”

It also took her years to address lingering effects of the school — such as not being able to say no.

“It carried over to my work life. Years later, I just took on too much because I just figured if I’m saying no, I’m being a bad person,” she said.

Legislative solutions

Now she’s fighting for the people still inside her old school.

The #StopTheShock Coalition also continues fighting through legislation but the bills haven’t made it through despite years of trying.

If it had passed, one of the previous bills would have prohibited “the use of procedures which cause physical pain or deny a reasonable humane existence to persons with disabilities.”

This, the bill stated, would prohibit “hitting, pinching, and electric shock for the purposes of changing the behavior of the person,” which is what the shock devices used at the facility are designed to do.

It, like many others, never passed.

But Elisa Hunt, lead organizer of the coalition, said she’s not giving up. Similar language is currently in a larger senate bill and the group will keep meeting about more ways to stop the use of the devices.

Levy fears the Trump administration could cause extra road blocks. But hopes someone in power steps up to make the changes he wants to see in his community.

“There’s a lot of misinformation about autism going around right now with the current administration. And we’re hoping that even with that, someone in the government can still do something and get it banned,” he said.

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