New Book Explores History Of Controversial Facility That Uses Shock Devices
In 1992, Nancy Weiss was sent to the Behavior Research Institute, which is now known as the Judge Rotenberg Center, by the state of Delaware. One word sums up what she witnessed: “Horrendous.”
She told MassLive she saw students sprayed in the face with water until “dripping wet,” another student was strapped to a wooden bench for making “unnecessary noise” and the only food was often served in small paper cups, she said. The Canton, Mass. school has since become known for using electric shock devices.
Before she left she said a teenager stopped her and asked for her help. She recalled that he said, “Miss, miss. Can you help me? I need a lawyer. Can you get me out of here? I need to get out of here. You don’t know what they do to us here.”
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“I just always have felt so badly that I don’t know who that is. I don’t know that kid’s name,” she said, tearing up. “But I have worked for 30 years to try to get them out of there.”
Earlier this month, Weiss and Jan Nisbet released a book looking at the events and places “that contributed to the inability of the state of Massachusetts to stop the use of electric shock.” The facility is still operating in Canton.
The book, “Pain and Shock in America: Politics, Advocacy, and the Controversial Treatment of People with Disabilities,” is 432 pages and said to be “the first book to be written on the Judge Rotenberg Center and its use of painful interventions to control the behavior of children and adults with disabilities.”
The book has already received multiple reviews.
“I am hopeful that by exposing what has occurred at the Judge Rotenberg Center, this work will finally bring this sad chapter of our history to an end,” Temple Grandin, author of “Thinking in Pictures,” wrote.
“A history of the notorious Judge Rotenberg Center in Massachusetts, and the fight to ban the use of electric shock treatment and other severe punishments on disabled children and adults,” the bookseller wrote. “This is a historical case study that remains sadly relevant, as aversion therapies are still encouraged in many places.”
The book, Weiss said, is a historical look at the facility and includes information from public records, articles and other reports.
“This is an incredibly well-documented book. It’s not a book about Jan Nisbet or my opinions about it,” she said. “It’s just a factual book about how things can go wrong, how powerful nonprofit agencies can influence government.”
Although Weiss and other disability advocates have been speaking out against the school for decades, she said people are still surprised to hear it’s a current problem, asking “how could that be legal? Wait, you mean that’s happening now, not in the 1930s?
“Every single time I train people, I mentioned this situation at JRC. And every single time, I’d say the majority of the audience, and these are people who work in the disability field, are horrified and have never heard of it,” she said.
Dozens of articles, including on MassLive, have been written about the Canton facility.
In March 2020, the Food and Drug Administration banned electrical stimulation devices (ESDs) used for self-injurious or aggressive behavior. The devices are only used at one facility, the Judge Rotenberg Center.
But that decision was overturned earlier this year. The FDA has since petitioned for a rehearing.
“A divided panel of this Court held that if a medical device has multiple uses, FDA lacks statutory authority to ban a device for a particular intended use because that would impermissibly regulate the practice of medicine,” the petition states. “The panel majority’s decision invalidates that rule and categorically prohibits FDA from banning medical devices for particular dangerous uses … This is an issue of exceptional importance to public health that warrants en banc review.”
The FDA warned in its petition that the “FDA determined that those devices present unreasonable and substantial risks of both physical and psychological injury.”
“The shocks cause pain that has been described as ‘extremely painful,’ ‘excruciatingly painful,’ ‘like a dentist drilling on an un-anesthetized tooth,’ like a ‘bulging and a ruptured disc,’ like ‘a thousand bees stinging you in the same place for a few seconds,’ and as ‘the most painful thing I’ve ever experienced,'” the petition states.
“And particularly for patients with intellectual disabilities — who may not be able to communicate their pain, control the application of the shocks, or fully understand why they are receiving the shocks — the devices can cause psychological harms, including post-traumatic stress disorder, depression, anxiety, substitution of negative behaviors, learned helplessness, chronic stress, and suicidality,” it continued.
The school stated that the most recent ruling “was a victory for the Judge Rotenberg Educational Center and a group of parents and guardians of its students, which had challenged the regulation.”
The JRC Parents Association previously told MassLive they are grateful for the court’s decision, adding that it is “life saving treatment of last resort.”
“There is no other treatment for our loved ones, and we will not stand by as they are mechanically or chemically restrained,” the association said in a statement. “The JRC Parents Association is looking forward to allowing their loved ones to receive this life saving treatment without further governmental interference.”
Attorney Max Stern, who represents the parents and guardians of JRC, also said “no treatment has otherwise worked.
“One client of ours is a woman who hit her head against the wall so many times that her retinas were detached,” he told MassLive. “It was not until she went to multiple various other institutions, not until she got to JRC and got this treatment that she was able to get this behavior under control so she could have surgery to make it possible for her to see again.”
Weiss agrees the system has failed these families.
“It is true that the system has failed their family members, and the system needs to do better,” she said. “But it’s not true that there aren’t other options.”
Jennifer Msumba, a former resident at the Judge Rotenberg Center, is also releasing a book soon.
Her book, “Shouting At Leaves,” talks about her time at the facility. It will be released Nov. 11.
“You will cheer her on as she not only survives but takes on a new life of freedom and joy in the end,” the description states. “She shares stories, tips, and strategies to equip you to be your own champion, and to build around you people who are loyal and true.”
Msumba has also shared some of her story on TikTok.
“I was shocked on the board for many separate occasions. One time for something I never even did,” the TikTok explains. “I lived this. These things happened.”
She talks about the reasons she was told she was shocked including getting up out of her seat.
At times, explained in the TikTok, she hoped her heart would stop.
Weiss and Nisbet’s book was originally started 20 years ago, but the ending never came.
“We really hoped that there would be an end to the story and before there was an end to the book,” Weiss said.
But they decided to move forward anyways.
“When people hear how long this has gone on, how many people have died in the care of the Judge Rotenberg Center, how horrifying their approach is, the impact that it’s had on people who have been there … that people will finally ask the right questions and make the right political decisions about closing this place down,” she said.
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