Opponents of the use of shock treatment on people with autism and others with disabilities at the Judge Rotenberg Educational Center in Canton recently got a boost from Congress.
The omnibus legislation that passed last month in the final days of the previous Congress included a clause that specifically gives the Food and Drug Administration the authority to ban such shock therapy devices. It’s about time.
The Rotenberg Center has existed under a 1987 settlement that allows it to use “aversives” such as shock therapy but makes the Bristol County Probate and Family Court responsible for individual treatment plans for its students.
“It lasts two seconds but it feels like 10-15 seconds because time stops when you get shocked by these things,” Jennifer Msumba, who lived at the center, said in a YouTube video describing her experiences in 2020. “They describe it as a bee sting, but some people say it’s like a hundred bee stings.”
The fact that autistic students are still being shocked is unconscionable. Juan Méndez, special rapporteur on torture for the United Nations, wrote in 2013 that the Judge Rotenberg Center’s practices are “tantamount to torture.”
In 2002, Andre McCollins was subjected to 31 shocks, which left him hospitalized for 37 days. He was so traumatized that his mother hid anything that resembled a shock device, like a cellphone or a remote control for a television. Prosecutors in the Massachusetts attorney general’s office forced Matthew Israel, the center’s founder, to resign in 2011 after they accused him of interfering with an investigation into the center.
The center’s existence and continued mistreatment of people with disabilities are a testament to how much autistic people can be dehumanized all in the name of trying to help them. Nobody likes to see people engage in self-injurious behavior. But far too often, society seeks to mitigate these actions rather than see that they are an outpouring of underlying problems or outside stimuli.
But, as the UN report warned, state action alone will not be enough since the center was previously headquartered in Rhode Island and California and the center could just uproot itself and relocate.
“Protections are needed at the federal level to ensure that Level III aversives are brought to an end in the United States of America,” Méndez wrote in his report. That report came out 10 years ago, and still, the center exists and its practices continue. In addition, about 90 percent of the students are children of color and 90 percent are residents of New York City, according to a report by ProPublica. To boot, ProPublica found that New York City sends $30 million in taxpayer dollars to the center.
The center has been able to succeed thanks to advocacy from parents who say there is no alternative. For far too long, parent advocates who say shock therapy at the JRC is the only viable option have been able to drown out the voices of opponents of the practice.
In 2020, during the Trump administration, the FDA banned the use of such devices for self-injurious or aggressive behavior, saying that they “present an unreasonable and substantial risk of illness or injury to the public.”
Consensus around the idea that shocking children with disabilities is a grotesque practice was welcome news and the culmination of years of activism by opponents of the practice.
But the US Court of Appeals for the District of Columbia Circuit overturned the ban in 2021, saying that “the FDA has no authority to choose what medical devices a practitioner should prescribe or administer or for which conditions.”
Now Congress has given the FDA authority to do explicitly what the court had said it did not have the statutory authority to do. There clearly is the political will to finally ban shock therapy which has been matched with the statutory capacity to do so.
Parent advocates who have argued for this treatment will probably continue their legal challenges. But the FDA has the opportunity to let autistic people be the authorities on what is good for them.
Eric M. Garcia is the senior Washington correspondent for The Independent. He is the author of “We’re Not Broken: Changing the Autism Conversation.”