CANTON, Mass. — Disability advocates have been fighting the use electric shock devices at a Massachusetts school for decades. In 2020, advocates felt like they got a win when the Food and Drug Administration banned the devices.

Earlier this month, that ban was overturned.

“When the FDA announced that it was actually issuing a ban last year, many of us almost couldn’t believe that it was true. It felt too good to be true. And yet, we were celebrating,” said Lydia Brown, director of policy, advocacy and external affairs for the Autistic Women and Nonbinary Network. “We had hope that an end might be in sight. And to have that hope seemingly crushed, at least for now, was a devastating experience.”

The devices are used at only one facility in the country, the Judge Rotenberg Center, which is in Canton. They are specifically used to “correct aggressive or self-harming behavior in adults and children,” the residential school said.

In March 2020, the FDA banned electrical stimulation devices (ESDs) used for self-injurious or aggressive behavior.

But on July 6, the U.S. Court of Appeals for the D.C. Circuit found that the ban was beyond the FDA’s authority as it was a regulation of the practice of medicine.

“In this case, the statute says that the FDA is not to construe its statute so as to interfere with the practice of medicine,” the opinion reads. “That means that the FDA may not enact the regulation at issue before us.”

The school stated that “the ruling was a victory for the Judge Rotenberg Educational Center and a group of parents and guardians of its students, which had challenged the regulation.”

There are more than 300 people who attend and live at JRC, of which about 55 people are approved for the devices.

The majority of the students are Black or Latino with white students making up 17.4% of the school’s population. The center told the Boston Globe that half of those receiving shocks are white.

Those numbers confirm to Brown “that extreme racial disparities exist” in the center.

The devices have also had a history of controversy.

The facility introduced these types of devices in the 1980s, Mother Jones reported. Since then many advocates have spent decades speaking out against their use. The facility has had numerous news articles written about their practices, including stories from MassLive, a number of court cases and a 2012 viral video that shows a student screaming and asking for them to stop.

“That hurts. That hurts,” the student can be heard saying in a panicked voice. “Stop. Stop for real.”

Advocates told MassLive they will continue to fight it.

“Every time we have faced a setback, we have rallied with hope that one day that torture will end,” Brown said. “We will never stop fighting. This is not the end. It’s not the end of possibilities for what could happen on the regulatory front, and it’s certainly not the end in our fight for freedom and for justice.”

A social media campaign #StoptheShock has gained traction on Twitter.

“Petco doesn’t sell shock collars for dogs anymore because they’re inhumane and positive reinforcement works better,” one person tweeted. “But we still allow our disabled community to be electrocuted for being neurologically atypical.”

Jennifer Msumba, a former resident at JRC, is also speaking about her experience on TikTok.

“It was a living nightmare. I was so anxious and terrified on a constant basis,” Msumba said, adding that the shocks were painful. “They make you sleep in them, take a shower in them, do gym class in them. Everything.”

Msumba also posted a list of reasons she was shocked, including getting out of bed without permission. At one point she said she was shocked five times in 10 minutes and was not supposed to know when the next shock was coming.

Msumba now lives in Florida and has nearly 10,000 followers on TikTok.

The JRC Parents Association said they are grateful for the court’s recent decision, adding that it is “life-saving treatment of last resort.”

“There is no other treatment for our loved ones, and we will not stand by as they are mechanically or chemically restrained,” the association said in a statement. “The JRC Parents Association is looking forward to allowing their loved ones to receive this life-saving treatment without further governmental interference.”

Attorney Max Stern, who represents the parents and guardians of JRC, also said “no treatment has otherwise worked.”

“One client of ours is a woman who hit her head against the wall so many times that her retinas were detached,” he told MassLive. “It was not until she went to multiple various other institutions, not until she got to JRC and got this treatment that she was able to get this behavior under control so she could have surgery to make it possible for her to see again.”

Disability justice attorney Shain Neumeier, however, wants Massachusetts to work with patients and their caregivers to find community-based options outside of JRC.

“They should be finding people places in the community where they can live independently,” Neumeier said. “Where they can get past this and receive services with their families and friends.”

It’s not just the shocks, Neumeier said, that are the problem at the school.

“If the shocks were banned tomorrow, there’s no reason they couldn’t go back to other forms of aversions,” Neumeier said. “What’s stopping them from using other forms of abuse or aversive interventions, as they would call them, including extensive use of restraints?”

Aversion therapy is a “behavior therapy designed to make a patient give up an undesirable habit by causing them to associate it with an unpleasant effect.”

Advocates also previously told MassLive they wanted more than just the ban, adding that “Massachusetts has a responsibility to make reparations to the survivors.”

“The people who were subjected to and continue to be subjected to violence every day in the JRC deserve recognition of that harm, formal apology, return of resources or redistribution of resources, ongoing support and commemorating and memorialize of what happened, so that we do not forget. So, that it does not happen again,” said Brown.

Advocates are also asking residents to pressure their legislators and remove public funding.

The Judge Rotenberg Educational Center was one of the residential schools that got help from Massachusetts Gov. Charlie Baker’s administration.

Last year, $16.1 million in relief went to 32 special education residential school providers to support costs related to the coronavirus pandemic.

JRC received $1,763,017 of that.

Sen. Chris Murphy, D-Conn., also introduced a bill known as the Keeping All Students Safe Act, which is designed to “protect students from dangerous seclusion and restraint discipline practices in school.”

“The Keeping All Students Safe Act (KASSA) comes at an important intersection in our nation’s history — where the abuses toward children, including children of color and those with disabilities have created a need and impetus to prohibit seclusion and set forth minimum standards for states in the use of physical restraint,” said Denise Marshall, CEO of Council of Parent Attorneys and Advocates. “We are a modern nation that has developed evidence-based practices that can help.”

Brown wants that bill to also include banning the use of aversive interventions.

“If folks want to demand something from Congress, what they can demand is that the sponsors of this bill consider an amendment that would expand it to ban the use of aversive interventions,” they said. “So that if that bill is passed, it includes a ban on the type of abuse used at JRC.”

© 2021 Advance Local Media, LLC
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