Members of ADAPT, a disability rights collective, rolled through the streets of Washington, D.C., last weekend to make camp outside FDA Commissioner Scott Gottlieb’s house, where they remained as of Friday morning.
They say they’ll stay until he agrees to finalize a proposed rule that would ban the use of graduated electronic decelerator (GED) devices, which are used to deliver targeted electric shocks in an extreme form of Applied Behavior Analysis (ABA), a controversial form of therapy used with some autistic patients. But refraining from shocking autistic people in the name of therapy is, advocates claim, only the tip of the iceberg when it comes to changing the way we treat autistic people.
ADAPT activists say GEDs are “barbaric,” equating their use to torture. Gottlieb, they say, has refused to meet with them, though they and groups like the Autistic Self Advocacy Network submitted comments during the rulemaking process. “The FDA is working to finalize the proposed ban on electroshock devices. We cannot speculate on the timing for finalizing the rule,” FDA spokesperson Stephanie Caccomo told Rewire.News.
Just one facility in the United States, the Judge Rotenberg Center in Canton, Massachusetts, still uses such devices; it also manufactures them, and in 2011, the FDA warned the school about modifications that exceeded the cleared indications for use. The disability community wants to see them struck from the toolbox, and many autistic activists think terminating the use of GEDs isn’t enough. It’s time to shut down the facility altogether, advocates say, because difficult conditions for Judge Rotenberg Center residents don’t begin or end with electric shocks. Last year, for example, two staffers were charged with assault when they restrained, beat, and spat on a resident.
The facility advertises itself as a “special needs school,” and has been open since 1971. Like other residential schools for disabled students, it represents a form of seclusion from society that runs contrary to the expressed preferences of the disability community. Children are referred to the school by public school districts or parents seeking placement.
“Schools and other state agencies are placing people there on the public dime,” said disability rights activist and attorney Shain Neumeier.
Representatives of the Judge Rotenberg Center did not return a request for comment.
While ADAPT attracted national attention in 2017 during the fight over access to health care, the group is a well-oiled machine when it comes to civil disobedience actions like this one. Priya Penner, who was on site with other activists, told Rewire.News that while it was “a little cold” to set up camp outside in Washington in March, “we’re here for the long haul. We’re here to show the FDA, and the world, that we mean business.”
The group has been flooded with donations of food and supplies to support their effort while they hold their ground between visits from police and the Department of Homeland Security. The campers very consciously chose public ground, however, ensuring they wouldn’t run afoul of trespassing laws. While they haven’t seen Commissioner Gottlieb—and were told that he wasn’t home—they have encountered some neighbors in his wealthy neighborhood. “We had a lady screaming ‘you’re ruining our lives! Get out of here!’” But, says Penner, “we’ve also had the opposite,” with people expressing curiosity and interest in the sit-in.
This ADAPT action reflects the group’s interest in civil rights, autonomy, and just treatment for the disability community. Autistic self advocates question whether autism is something that needs to be treated at all, rather than being accepted as a natural variation of human diversity. They’re particularly concerned about approaches to treatment that they believe are harmful. These issues are especially complex in the context of ABA, where parents and guardians are often making decisions on behalf of people who are not empowered to make their own choices about where they live and what kind of care they receive.
Proponents say aversive therapy, like GED shocks, helps to extinguish “unwanted behaviors” by teaching people to associate them with pain or other unpleasant experiences. Patients who wear GEDs can be shocked at any time by someone who holds the controller, and shocks may be paired with tactics like breaking ammonia capsules under people’s noses, pinching, hitting the bottoms of the feet with spatulas, and other physical abuses, said Neumeier.
Many Judge Rotenberg Center residents are from out of state: According to Neumeier, nearly 150 residents—roughly two thirds of the school’s admissions—come from New York, most originating from New York City, and the population of the school is heavily Black and Latinx. The center, according to Neumeier, has “some pretty predatory recruiting tactics as far as low-income families of children with disabilities.”
Advocates say this creates a perfect storm for abuse within the center’s walls, exemplified by the use of GEDs. Before a GED can be used on a resident, a parent or guardian must consent, and a probate judge must approve the resident’s treatment plan. In 2011, the Massachusetts Department of Developmental Services introduced rules prohibiting the use of GEDs on new patients in response to considerable testimony from experts and members of the disability community indicating that aversive therapy is ineffective and dangerous. One year later, the center found itself under scrutiny after a video was released showing resident Andre McCollins being shocked 31 times over seven hours while restrained to a board, horrifying his mother, who later brought suit and settled with the JRC.
Facilities like the Judge Rotenberg Center are sometimes treated as an option of last resort, and parents driven to desperation have repeatedly defended the institution from critics. But Neumeier says this approach misses the larger need for comprehensive home- and community-based services, the same issue that lies at the core of other ADAPT fights. It also omits the fact that there are alternatives to aversive therapy available, such as those rooted in collaboration with autistic people to help them achieve goals. These approaches rely on establishing communication with people to learn the root causes of outbursts and unexpected behavior.
Demanding action on GEDs has brought the issue into the light for a general public that might not have otherwise been aware, and that could be the start of a larger conversation. If pushing the FDA results in a move on the use of shock devices at the JRC, Neumeier says, “My big concern is that once the shock piece is eliminated, people will say ‘okay, we’ve solved this, let’s all go home now, yay.’ That won’t be enough.”