|Disability rights advocates protest outside the FDA in 2013. (Taylor C. Hall)|
| The Washington Post |
In February 2000, Cheryl McCollins sent her son Andre, an 18-year-old autistic student, to the Judge Rotenberg Educational Center for help with his behavioral and developmental difficulties. Andre had already tried two other residential schools, including one where another student sexually assaulted him, to overcome his tendency to break things or hit people in rage attacks. Twenty months later, in October 2002, Cheryl received a terrifying call from a center employee, who told her, “Andre had a bad day.” Earlier in the day, a staffer told Andre to take off his jacket. When he said no, another staff member pressed a button to activate the electric-shock machine attached to Andre’s body with taped electrodes. Andre screamed and threw himself under a table. Four adults dragged him out, and strapped him, facedown, into four-point restraints. Over the next seven hours, Andre was shocked 31 times with a device that emits 45.5 milliamps of electricity — a shock more than 15 times as powerful as the stun beltsdesigned to incapacitate violent adult prisoners. Staff members recorded the reason for each shock — all but two entries on his recording sheet list tensing up or screaming. In the surveillance video, Andre can be heard pleading for staff members to stop. At the Rotenberg center, in Canton, Mass., this is called treatment.
The center’s founder, Matthew Israel, invented the shock device in the early 1990s, under a theory of behaviorism drawn from work by B.F. Skinner and Ivan Pavlov. Israel’s theory was that exposure to painful stimuli — “aversives” — reduces or eliminates undesirable behavior. Known as the graduated electronic decelerator (GED), the device emits a shock stronger than the stun guns used by police. The center’s own staff frequently claims that the GED is mild. In an interview with ABC News, Rotenberg spokesman Ernest Corrigan said, “The skin shock that we’re talking about is two seconds, and people who have experienced it say it feels like a bee sting.” The center (and its defenders) claim that it is a treatment of last resort used for those with the most severely dangerous, self-injurious and aggressive behavior. They claim that it is effective, despite no evidence of long-term efficacy, something even Israel acknowledges. They claim that it is supported by a robust array of research, despite no independent peer-reviewed research in decades. (What looks at first glance like an impressive array of articles on Rotenberg’s Web site is, upon close examination, mostly internal case studies or data analyses, or items written by Israel or people associated with him.)
My friends and colleagues know otherwise. At a recent hearing in April convened by the Food and Drug Administration, former Rotenberg resident Jennifer Msumba testified that she has nightmares about the center at least once a week. “In these nightmares, I’m getting shocked,” she said. “If I hear certain noises, like the Velcro they use to keep [the remote controls for the device] closed, I freeze. I feel like it’s about to happen to me.” Rather than teaching adaptive functioning skills to change dangerous behaviors, aversive electric shock causes only great suffering, pain and trauma. At best, the shocks temporarily repress behaviors by using fear to control residents. That is not treatment. That is torture, as Disability Rights International argued in its damning investigative report on Rotenberg’s practices.
Another former resident, Ian Cook, testified at the same hearing that he was forced to undergo a procedure that the center calls “behavioral rehearsal lessons,” in which staff members pressure a resident to perform a behavior targeted for elimination. If the resident refuses to comply — to act in a way that gets him shocked — he will be shocked. Ian described this frightening experience like this:
“While I was sitting in a restraint chair, a staff [member] would burst into my conference room — I was one-on-one alone with staff — and screamed at me to hurt him, holding a knife. Even though I did absolutely nothing and sat there in shock, not having any idea what was going on, I would receive a shock from the GED device. This happened a couple of times a week, at first, and left me in a constant state of fear, never knowing when I’d be hurt for no reason.”
Former staff member Gregory Miller testified that, at times, he had to shock six or seven residents simultaneously. This is because crying, screaming or tensing up in fear — perfectly natural and understandable reactions to witnessing other students being shocked and wondering whether you will be next — also are targeted behaviors. Sometimes students began to panic if a staff member so much as reached for her pockets, where the GED’s remote-control devices are kept. (Residents can be shocked for panic, too.) By the center’s own admissions, residents can be shocked for closing their eyes while walking, getting out of their seats without permission or swearing. These are hardly the extremely dangerous behaviors that the center claims are the sole targets of the shocks.
Yet even for people who exhibit the worst violent and life-threatening behaviors, the center is operating with science as its adversary. In 1990, a group of the leading behaviorists, clinicians and researchers specializing in the severe behavioral challenges of people with disabilities published a joint statement rejecting all forms of painful and dehumanizing treatment, including electric shock. Three years later, Ole Ivar Lovaas, the behavioral expert who pioneered the use of electric shock as a treatment for autistic people, repudiated his prior work and criticized the use of painful stimuli as punishment. This was more than 20 years ago. The center is the only holdout that still uses this archaic treatment method.
The center is legally permitted to use electric shock as a behavior-modification tool on some of the most vulnerable children and adults with disabilities. But its executive director eventually admitted at April’s hearing that staff members had not complied with user-manual requirements that the device can be used only by or under the direct supervision of a licensed medical professional such as a psychiatrist. If agencies such as the FDA do not ban aversive electric shocks, disabled people at the center will continue to be shocked in the name of “treatment.” Even worse, while the Rotenberg Center is the only program currently using aversive electric shock, the continued legality of this treatment leaves the door open to future abuse by other providers. This would be considered inhumane for convicts, detained terrorists or animals, but it apparently is acceptable if it is done to people who are disabled.
Perhaps there is no better argument against the use of such barbaric practices than Ian’s experiences after leaving the center. “I was in an abusive relationship two years ago,” he said, “and part of why I fell prey to it is that JRC instilled a lesson in me that it is okay for people to hurt me so long as they are trying to correct me.” As an autistic person myself, it is terrifying to know that others can abuse me with impunity so long as they claim that what they are doing is for my own good.
Lydia Brown is the president of the Washington Metro Disabled Students Collective, former staffer at the Autistic Self Advocacy Network, and past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership.