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Electric shock devices—they’re putting disabled children and adults in danger

July 13, 2021, 5:21 PM UTC

Today I’m flagging an under-reported story that has enormous implications for autistic and other developmentally disabled children and adults, their families, and the people who advocate for them.

Last week, a federal appeals court overturned a ban on the use of electric shock devices, known as electrical stimulation devices or ESDs, which had been previously employed to “correct aggressive or self-harming behavior in adults and children,” at a special-needs day and residential school in Massachusetts.

The ban was issued after a four year study in March 2020. It was unequivocal.

“Since ESDs were first marketed more than 20 years ago, we have gained a better understanding of the danger these devices present to public health,” said William Maisel, M.D., M.P.H., director of the Office of Product Evaluation and Quality in the FDA’s Center for Devices and Radiological Health, in a statement posted on the FDA’s website

According to the lengthy statement, there are more effective and far less risky alternatives. “Evidence indicates a number of significant psychological and physical risks are associated with the use of these devices, including worsening of underlying symptoms, depression, anxiety, posttraumatic stress disorder, pain, burns and tissue damage. In addition, many people who are exposed to these devices have intellectual or developmental disabilities that make it difficult to communicate their pain.”

Jennifer Msumba, an autistic woman who received shocks “almost every day,” sued the Judge Rotenberg Center in Canton, Mass., the only facility in the U.S. that still uses ESDs. “When they started putting me on the board, I would get five or ten shocks for just doing one thing,” meaning a minor behavioral infraction, she told CBS News in 2014. “That was like being underground in hell. I would ask God to make my heart stop.” 

Some of the shocks are delivered via a backpack device equipped with a battery and wires.

The practice has torn the community apart, with parents who say it is the only way to control dangerous or violent behaviors, and the many critics who call it a form of torture. Detractors say many of the behaviors are natural, like stimming, rocking, or other restlessness, and are not harmful. The school is tax-payer funded.

The controversial practice first tumbled into the public eye after a video of a student who received 30 shocks over a seven-hour period was shared publicly. The horrific video triggered a Change.org petition to ban the practice and became the centerpiece of a medical malpractice case filed by Cheryl McCollins, the teen’s mother. The case was settled in 2012.

The ban was overturned on what appears to be a technicality: The 2-1 opinion issued by the U.S. Court of Appeals for the D.C. Circuit found that the practice is a medical treatment, and as such beyond the FDA’s scope to regulate. 

Disability experts and advocates have started an informative, if not deeply alarming, conversation on social media under #StopTheShock, a wealth of resources for anyone who wants to learn more about the specific issue, and the more general contempt non-disabled, non-autistic people have for their disabled and autistic peers.

It’s a dive into the deep end for new allies to the disability community.

“I don’t know how else to impress upon everybody just how much non-disabled people hate disabled people,” Imani Barbarin, a communications professional and disability advocate posted in a recent TikTok. “There’s an entire group or lobby of people who find it too difficult  not to electro-shock children. They find it too difficult to have disabled people, autistic people, existing as they are.”

Ellen McGirt
@ellmcgirt
Ellen.McGirt@fortune.com

On point

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This edition of raceAhead was edited by Wandy Felicita Ortiz.

On background

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Mitigating Bias in Artificial Intelligence

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Bon Appetit

Today's mood board

RaceAhead-Nigerian Culinary
Chicken jollof rice? Fried plantains? Yes, please and thanks.
Craig F. Walker—The Boston Globe/Getty Images

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