A staff person told Andre McCollins to take his coat off.
He didn’t do it.
So a staff person took one of the plastic boxes from their belt — a remote control device with McCollins’ face on it — and pressed a button to deliver an electric shock.
McCollins was a young autistic man. Like a disproportionate number of the children and adults in the facility where he was being held, he was a person of color. He had been kicked out of multiple programs in the past for problematic behavior — the services he needed to live a good life in his own community appear not to have been available to him, as they are unavailable to many like him — and his mother, Cheryl McCollins, had arranged for him to be sent to the Judge Rotenberg Center (JRC) in Canton, Massachusetts. She believed JRC would help him.
JRC has a reputation for taking people with developmental disabilities and those identified as having emotional and behavioral disorders — primarily autistic people from New York State whom no other program wants to serve — children and adults they describe as “the worst of the worst,” and especially people who are self-injurious or violent. JRC promises they can help people nobody else can. They specialize in behavior therapy, manipulating rewards and punishments in the expectation that this will alter the behavior of the people they target. They are the only program in the United States still using contingent electric shock as a way of altering behavior by inflicting pain and fear.
On October 25, 2002, Andre McCollins had been at JRC for some time. He was wearing a Graduated Electronic Decelerator (GED), JRC’s proprietary shock device, the body of which is kept in a backpack or fanny pack and which is connected to electrodes worn on the target’s skin. McCollins had three that day: two on his legs and one on his torso; his mother had instructed that he was not to be shocked again on his arms. Like everyone else who is fitted for a GED at JRC, he had a court order in his file; a judge had determined that this is what McCollins would have wanted. He had received about 30 shocks in the last 6 months, and reports were that he was doing “better.”
And then he refused to take off his coat.
Over more than 7 hours, McCollins was strapped to a 4-point restraint board and shocked 31 times while he screamed and begged and apologized. All but one of the shocks was for “full-body tense-ups” (a coping method former JRC staffer Gregory Miller has reported students often use when anticipating shocks because it reduces the pain) or screaming, which were violations of his established behavior plan. He did not get a chance to use the bathroom during this ordeal, or to eat or drink until he received juice at the end of the day. There is video.
When it was over, he was catatonic for 3 days. He was not taken to an emergency room.
More than 15 years later, what happened to Andre McCollins is still legal. It shouldn’t be. It wouldn’t be legal for anyone else — not convicted terrorists, not captured enemy combatants, not anybody. And it shouldn’t be: torture should not be legal. But it happens every day to disabled people.
In April 2012, the McCollins malpractice case, filed by Cheryl on Andre’s behalf because by then he had been institutionalized in a state hospital for years, went to court. In a surprise move, because JRC has historically been very good at preventing video of what goes on there from reaching the public, the judge allowed the videotapes from that day in 2002 not only to be shown in court, but to be filmed and shown on television.
It ignited a firestorm.
JRC was founded by Matthew Israel in 1971, known then as the Behavior Research Institute, and for a time it was well-respected. Although behavioral methods of control were under fire in a number of places, and although eventually protections were granted to a number of groups such as those in psychiatric facilities, prisons and the public schools, intense manipulation of rewards and punishments remained a common teaching tool for some people with intellectual and developmental disabilities. Those punishments — known as aversives — included squirts of Tabasco sauce in the mouth and lemon juice in the face, white noise helmets, and also electric shock. The rewards include such things as an adequate diet.
Over time, most of the behavioral community moved away from significant aversives, finding that programs based on rewards were more “effective.” They didn’t always produce an initial change in behavior as fast, but behavior changes could be better sustained over time. When aversives are stopped, in most cases the behavior they were used to control returns — this is one reason that, although JRC bills itself as a “school,” it holds some people for decades after their 21st birthdays. Eventually, only JRC continued to admit to using shock.
By the time of the McCollins trial, Israel was no longer in the picture, having resigned the previous May to avoid prosecution for destroying evidence and gone to California. But JRC was still going strong.
Many in the adult autistic community subscribe to the “neurodiversity paradigm,” which treats a wide range of neurologies as normal and encourages people to work with, rather than fight against, the brains they have. They see stimming — repetitive motions — and having a few intense interests rather than many shallower ones, communicating through means other than speech and avoiding eye contact (which autistic adults consistently report interferes with their ability to listen) as healthy ways for them to live.
Autistic advocates and activists disagree with much more of what goes on at JRC than just the shock. People at JRC are often denied food, restrained, and subject to a range of punishments beyond the GED. At the same time, there is a Wizard of Oz-themed reward center, complete with animatronics, where people who have complied with their behavior plans can experience things like shops and a beauty salon.
Many autistic adults oppose behavioral treatments for autism altogether, citing the number of survivors who report post-traumatic symptoms and the fact that they are explicitly designed to enforce typical behavior. They have been fighting for years to close JRC down and end the practice of using Applied Behavior Analysis on children.
But the shocks hold a special place in the list of horrors to which people with intellectual and developmental disabilities are subjected in the name of “treatment.”
JRC argues that the shock doesn’t really hurt anyone, being no more painful than a bee sting, and that those who are subjected to it are not really afraid of it happening, but survivors disagree.
Jennifer Msumba, for instance, who entered JRC seven months before Andre McCollins received his 31 shocks over about a seven-hour period and who remained there for seven years, told CBS News that she “would ask God to make my heart stop because I didn’t want to live when that was happening to me. I just wanted to die and make it stop.” Although JRC takes pride in the fact that they do not use psychotropic medications, Msumba has said she preferred the drugs, because at least on the drugs she wasn’t afraid.
CBS captured video of a cheerful-seeming nonspeaking girl with an intellectual disability who suddenly, upon seeing the remote control that activated her GED, became upset and tried to get away.
Over the years, the GED has been modified to make it more painful, as people adjusted to it and it became less effective. JRC currently uses a model known as the GED-4, although the original GED-1 is also still in use.
The facility also argues that shock is a safe procedure.
In April 2014, Msumba testified to the Food and Drug Administration (FDA), “When I would get GED, I would get – most of the times I would get a very bad muscle cramp that would last me for one to two days. I would get burn marks on my skin. They like to call them small, raised bumps. They’re burn marks. It’s electricity going into your skin, and it’s very itchy and it stings afterward, and you have these circular marks where you got the GED. I also at one time was given several GEDs in one leg in a row, and I had a terrible pain shoot all the way through to my foot. And after that, I had no sensation in my skin on the lower half of my leg. And for about a year, if I would touch my skin, I couldn’t even feel anything that touched my skin, from that.” There are photos showing burns from even the GED-1.
Finally, JRC makes the case that, whatever the drawbacks, shock is justified by the dangerous behaviors that people who receive court-ordered contingent shocks display. Msumba, they have told CBS, used to bang her head severely, for example.
Others working in the field of providing support services to people with developmental disabilities disagree, however.
Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities, testified to the FDA in April 2014 that “a wide range of methods are available which are not only more effective in managing the dangerous or disruptive behaviors of children and adults with disabilities, and have more lasting effect, but which do not inflict pain on or dehumanize people with disabilities. Alternative approaches that are proven to be effective attempt to identify the individual’s purposes in behaving as he or she does and offer support and education to replace dangerous or disruptive behaviors with alternative behaviors that will achieve the individual’s needs. No attempt is made at the Judge Rotenberg Center to identify the functions behaviors may serve, to offer psychotropic medication when needed or to teach strategies or alternative behaviors that may help people with significantly challenging behaviors to learn ways to control their own behaviors. Many former students speak about self-control approaches they learned after leaving the Judge Rotenberg Center that finally allowed them to address their own behavioral needs and heal from the terror they experienced.”
Advocates have long pointed out that, for all JRC’s claims of effectiveness and insistence that it is a “school,” many people are stuck there for decades because nobody else will do the shocks, and the shocks are the only thing suppressing the self-injury, violence, or other disruptive behavior. In other programs, participants learn self-management and can then more easily find less restrictive places to receive services.
She added that David Coulter, a child neurologist and past president of The American Association on Intellectual and Developmental Disabilities, has assured her that in a 28-year, 15,000-patient career that involved work at two state schools in Texas and two private schools for students with disabilities, “I have never seen anyone who, in my medical opinion, needed electric shock as a form of behavior management.”
As the McCollins trial progressed, horrified audiences across the country watched clips from the video of him being mechanically restrained and electrically shocked. They heard from Cheryl McCollins that she now regarded what happened every day at JRC as torture. They heard from people like Msumba and former staff member Gregory Miller.
Miller was horrified to learn that, contrary to what JRC had been advertising, the GED-4 was not FDA-approved. “Due to this great deception,” he reported, “I am guilty of carrying out some of the most terrible torturous crimes against helpful and nonverbal students [sic]. The nonverbal students cannot speak of the horrors to which they are subjected at JRC by well-meaning staff like me, or tell of their nightmares from watching their classmates get shocked.”
Gregory Miller described students being provoked into dangerous and disruptive behavior during the data-gathering phase as staff prepared to request a court order for the GED. He described behavior plans being altered just before a phase in which the records kept would be shown to a judge, so as to conceal what was actually going on.
What was actually going on, according to Miller, included students being shocked for things like closing their eyes for more than 15 seconds while at their desks, standing up from their seats to ask permission to go to the bathroom, and — again — “full-body tense-ups” in an attempt to manage oncoming physical pain.
Miller said that “a number of the nonverbal students … received 30 shocks in a day, including while tied to a restraint chair … What happened to Andre McCollins was not an exception or more excessive than the manner in which a number of lower functioning [sic] students were treated.”
He described “bloody and crusty scabs” on multiple students from the shocks, and a student whose epileptic seizures appeared to be triggered by applications of the GED.
His accounts are in line with what survivors report.
The advocates and activists who had been fighting shock all along suddenly received new support.
The McCollins malpractice trial ended in a settlement.
The shocks continued.
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
For more information: http://autistichoya.net/judge-rotenberg-center
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.