When Eagle visited the Judge Rotenberg Educational Center in a suburb south of Boston, with her mother in the early 2000s, the 14-year-old stepped into the brick building and caught a bizarre sight: kids wearing backpacks with wires bursting out of them.
She asked a staff member about the backpacks, and was told that it was a graduated electronic decelerator, a device capable of shocking someone’s skin.
“My fear went up through the roof. I just couldn’t believe that something like that was here,” said Eagle, who prefers to use a pseudonym to protect her identity.
A year later, Eagle said the staff also started shocking her to deter her “destructive behavior” towards herself and others. Shocks on her legs, her arms, her stomach — like nails puncturing her skin. It happened a few times a week, Eagle said, but it quickly became an everyday fear.
“It was the scariest thing that I ever had to endure and witness,” she said about her four-year tenure at the residential facility in Canton, Mass. for people with self-injurious or aggressive behavior, including many clients with autism or intellectual and developmental disabilities. “I lost sleep, I was losing a lot of weight. I would even wet the bed, too — like, I’m 14, and I was wetting the bed.”
Eagle’s harrowing experience happened about 20 years ago. In the decades since, scientists and disability rights advocates have condemned the center’s use of contingent electric shock to treat such behavior, calling the treatment unnecessary and, according to United Nations’ officials, torture. Experts said it is the only place in the U.S. that uses the device.
After years of regulatory and legal wrangling, the FDA is on the verge of banning the device, but with an impending administrative change in the nation’s capital, advocates are worried that the regulatory agency may lose its sense of urgency, undoing decades of activism by the disabled community.
Fifty-four adults currently receive shock treatment at the Rotenberg Center, according to attorney Mike Flammia, a spokesperson. A judge must approve the device’s use, which happens, on average, once a month, in addition to other drug and behavioral treatments. Flammia dismissed anecdotes like Eagle’s that claim mistreatment. “What’s going on at JRC is great treatment, great care for these clients. The media likes to find a boogeyman and make something out of nothing,” he said.
Flammia also claimed electric shock successfully treats self-injurious and aggressive behavior and is only used in the most extreme of cases, but numerous clinicians and former residents have cast doubt on these claims.
“No matter the individual, no matter the manifestations of the disability, there are ways to address it that don’t require the use of an electric shock,” said Eric Buehlmann, the deputy executive director for public policy at the National Disability Rights Network.
Though the science is settled, efforts to end the device’s use can feel Sisyphean. Months before former president Donald Trump took office the first time, the Food and Drug Administration first proposed a ban on electric stimulation devices for this purpose. The agency finalized the rule in 2020, but a federal appeals court soon overturned the decision.
The FDA is trying to ban the device again, and autism advocates and disability rights advocates are currently pleading with the agency to expedite publication of their final ruling — currently slated for September 2025 — before the second Trump administration begins. An FDA spokesperson said the timeline for a final rule is “subject to change” as it reviews comments on the proposed rule.
Activists worry that the earlier years-long delay could be a harbinger of Trump’s second administration, especially under a new Health and Human Services department led by Robert F. Kennedy Jr. While Kennedy has not publicly commented on the FDA measure or the device’s use, he has spent decades promoting disinformation about autism. He recently posted on X that he will push the FDA to prioritize debunked and potentially dangerous treatments such as chelation therapy, instead of needs the disability community has spent decades fighting for, such as banning electric shock.
“The entire disability community right now is very much on edge about a lot of fundamental rights and protections that we have,” said Greg Robinson, deputy director of public policy at the Autistic Self Advocacy Network.
Since opening in 1971, the JRC has developed a reputation as a place of last resort, a place where kids and adults who were aggressive towards themselves and others can receive treatment. But the center accumulated violations for falsely claiming its staff were licensed psychologists and received increased scrutiny when a decade-old video of staff restraining and repeatedly shocking a student for several hours went viral in 2012.
The gruesome video corroborated letters that activists had been sending the FDA, asking the agency to ban the graduated electronic decelerator. The center’s leadership maintained that the shocks do not cause physical harm, but independent clinicians begged to differ.
“It was horrible. It hurt like hell. It made me angry, made me cry, and I wanted to chuck the device at the head of the clinician that gave me the shock,” said Jennifer Zarcone, a psychologist, who received a personal demonstration in 2015.
Zarcone is also the chief clinical officer at the May Institute, a Massachusetts-based organization that operates 140 centers across the country, and promotes the use of applied behavior analysis, the most-utilized treatment for autism — though its use is also controversial. She said there are many interventions and options available to manage severe aggression and self-injury that don’t include electric shock.
“This doesn’t even need to be in the tool kit. It shouldn’t be an option,” said Zarcone.
Science notwithstanding, banning the device has been tricky at multiple legislative levels. A Mother Jones investigation in 2007 first exposed the issue to Americans, and activists have been writing letters to state and national legislators about the issue since at least 2010.
The FDA first met with activists in 2013, before the initial proposed rule in 2016. After a lawsuit doomed the agency’s first attempt to ban such devices, the U.S. Congress passed a measure in 2022 that solidified the FDA’s authority when it proposed the ban again. Massachusetts state legislators most recently tried to ban the practice in 2023, but a court challenge squashed that effort.
People in the disability community cheered the FDA’s renewed attempt to ban the device, a massive win in the decades-long struggle against the mistreatment of disabled people through so-called behavioral aversion treatments such as shock, restraint and seclusion. And until Trump’s reelection, many activists felt like an FDA ban was a guaranteed outcome.
This rosy view has changed, mainly due to the expectation that Kennedy will run HHS, that his deregulatory agenda might keep the FDA from using its legislative authority. Even if the incoming administration does not shoot the ruling down, National Disability Rights Network’s Buehlmann said it is unlikely they will make it a priority — which means that the Judge Rotenberg Center’s staff can continue to deliver electrical shock to its residents.
Activists are worried that a push to expedite the process could open itself up to risk. But they believe that it’s a risk worth taking, said Robyn Linscott, director of education and family policy at The Arc, a national community-based organization advocating for the rights of people with intellectual and developmental disabilities.
“It is abuse,” said Linscott. “We are not allowed to use shock devices on many types of animals. We are not allowed to use these types of methods pretty much in any other circumstance in this country — except on people with intellectual and developmental disabilities.”
Greg Robinson remembers hearing about this issue as an autistic child in the 1990s. Decades later, he accepted a job at ASAN to help autistic people have a voice in how laws, especially those that affect their well-being, are written and passed. Soon after starting, he encountered a news story about the Rotenberg Center. He said, “My first thought was, ‘this place is still around? How is that possible?’”
Eagle is also baffled that the center is still open, too. A doctor recently diagnosed her with PTSD. She said the four years of abuse still haunts her body and her relationships. Even decades later, she told STAT, the nightmares haven’t stopped.