In 2020, just before COVID-19 hit the fan, the U.S. Food and Drug Administration issued a final rule prohibiting the use of ESDs, or electrical stimulation devices, as a means of controlling the behavior of disabled people.
Actually, the S in ESD should stand for “shock” instead of stimulation. Because, as the rule pointed out, the purpose of these devices is to deliver a shock to another individual as a means of behavior modification. To call it a stimulation device is to downplay its purpose to an absurd degree. It is like saying that putting someone in an electric chair stimulates them to death.
The rule also pointed out that only one facility in the United States has manufactured these devices or used them on individuals in recent years. That would be the Judge Rotenberg Center (JRC) in Canton, Massachusetts. The website of the JRC says it is a day and residential school providing “very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems, as well as those with intellectual disabilities or on the autism spectrum.”
In 2021, a federal appeals court struck down the FDA ban because, the ruling said, the agency had overstepped the boundaries of its authority by banning the use of the devices for a specific purpose rather than banning their use altogether. The lawsuit that brought about that decision was initiated by the JRC.
In response, Congress included a provision in an appropriations bill it passed at the end of last year that clarifies that the FDA does indeed have the authority to issue such a ban. Thus, on May 4, a letter urging that the ban be reinstated was sent to Health and Human Services Secretary Xavier Becerra. The letter, which was signed by more than 100 advocacy organizations, says, “[C]hildren and adults with disabilities have continued to suffer from painful and dangerous electric shocks.We urge you to end this abuse.”
I know it’s hard to believe that the question of whether or not it’s okay to use shock devices to control the behavior of disabled people is this contentious, but this is a political battle that has been going on for years. In 2014, after receiving a wave of public complaints about the use of shock by the JRC, the FDA convened a panel to recommend what, if any, action the agency should take regarding the use of ESDs. Then, in 2016, the FDA released a proposed ban. But the final rule didn’t come out until 2020.
The JRC defends the practice tenaciously. In a statement praising the 2021 court decision, the JRC called the use of shock “ a treatment of last resort, and its recipients are at risk of grievous bodily harm, or even death, without it. With the treatment, these residents can continue to participate in enriching experiences, enjoy visits with their families and, most importantly, live in safety and freedom from self-injurious and aggressive behaviors.”
But the letter from the organizations calling on the FDA to reinstate the ban says, “In the years since this issue was first raised with the FDA, many vulnerable people with disabilities were subjected to electric shocks for behaviors such as getting out of one’s seat, interrupting, whispering, slouching, swearing, or failing to maintain a neat appearance.”
One would think that among the basic civil rights disabled people should have is the right to not be shocked.