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
[email protected]
On point
Global food insecurity is on the rise, due to COVID According to new data released yesterday by the U.N. Food and Agriculture Organization, more people are hungry around the world. People experiencing hunger around the world is now 768 million, an increase by some 118 million people in 2020. It’s the highest number since 2006. Worse, those in food insecure areas, meaning they are contending with reduced quantities and quality of food is grew by 318 million, to 2.38 billion. In the developed world, the percentage of food insecure people grew from 7.7 to 8.8 percent. “But the developing world, home to billions of informal workers and gaps in government assistance, fared far worse,” reports the Washington Post. Washington Post
The fight over critical race theory is driving talented educators out of the profession As if it wasn’t hard enough to be a teacher, the current conflicts over critical race theory and the teaching of certain history and literature subjects is forcing teachers and administrators out of their jobs. “In education, we have responded to opposition with truth and facts and being able to say, ‘Yeah, I can see why that’d be a concern, but this is what is really happening.’ In most cases that works for us,” Rydell Harrison, a Connecticut-based school administrator who resigned after he was the target of a conservative campaign to discredit his leadership. “But when facts are no longer part of the discussion, our tools to reframe the conversation and get people back on board are limited.”
NBC News
Turns out, Howard University has a union problem This testimony from Howard University professor Imani Light is cleverly addressed as an open — and truly welcoming — letter to new professor Nikole Hannah-Jones. But its true purpose is to amplify a more common problem experienced by non-tenure track faculty at colleges all across the nation who are seeking fair treatment from their administrations. “Three years ago, the full-time faculty who work in positions not subject to tenure, organized and voted to create a Union that covers a membership roster of less than 150 professors,” she writes. “And in the three years since that ratifying vote passed, Howard University has rivaled the likes of Amazon and Wal-Mart in their efforts to first block and then break the Union of non-tenure-track faculty.”
Medium
What if some people will always feel safer working from home? By "some people," I mean Black women, who have repeatedly expressed a certain relief working from home beyond the flexibility, the comfortable attire, and the money saved at food courts and at the gas station. In study after article, they report feeling a greater sense of belonging and a greater sense of relief that they can just skip the microaggressions which sapped their energy. For Josephine Ink, who works at a non-profit that "has a 100% turnover rate for Black staff," it’s a chance for her to just do good work. "They've never had more than five Black staff at a time," she told Business Insider. "Last year they lost, like, every Black staff member they had — except for me."
Business Insider
This edition of raceAhead was edited by Wandy Felicita Ortiz.
On background
Get serious about rooting out bias in AI The Berkeley Haas Center for Equity, Gender and Leadership has published a playbook for anyone grappling with how to implement predictive and decision-making technologies responsibly. (Everyone should be grappling with this, by the way.) AI represents the largest economic opportunity of our lifetime, they begin, we have got to get this right. The playbook is thorough and I’m still reading it, but a couple of things jumped out right away. Think of datasets as living resources: Data gathering must be intentional and responsible, and important questions need to be asked around who benefits from the data being collected. And bias must be investigated and rooted out at every stage of an algorithm’s development.
Mitigating Bias in Artificial Intelligence
Wake up, sheeple Annie Lowrey has written an essay that will make you laugh…until you cry. If you’ve spent even a minute online you’ve already met Facts Man, the prolific user of every communications medium, aiming to bring order to the chaos with the unvarnished truth. “The conclusions that the social-justice warriors and sheeple professors will not let you reach. The conclusions that mere mortals, including lauded subject-matter experts and the people who have actual lived experience of the topic at hand, have not yet grasped.” Yeah, that guy. And the business world generates plenty of ‘em. While she breaks down the stereotype pretty handily, it leaves you with a pretty tough question: What to do about a “guy” who grabs the mantle of authority and then ruins the conversation for everyone? Seriously, not a hypothetical.
The Atlantic
The enduring whiteness of recipe writing Cookbook authors Priya Krishna and Yewande Komolafe took to FaceTime to dish —not about food so much — but about how hard it was becoming to present their recipes to American audiences without whitewashing them. Part of the problem, says Komolafe, is that lots of home cooking doesn’t use exact amounts of ingredients. “I think too often the expectation is that if you as a home cook follow a recipe exactly, then it's going to look like the picture,” says Komolafe, who has been called the “voice of Nigerian cooking.” She says that sort of Western expectation misses the point. “A recipe should be more like a set of guidelines.” The pair also dig into the power dynamic associated with colonization, and the practice of taking credit for the recipes of enslaved people. And what to do with oral traditions? “[I]n Nigerian cooking there's this process where you take a starch and you pound it, but there’s no technical name for it,” says Komolafe. “I think the way we write recipes now almost demands that we have one word for a given technique.”
Bon Appetit
Today's mood board
