On March 26, the Food and Drug Administration (FDA) published a proposed rule that would “ban electrical stimulation devices (ESDs) intended for self-injurious behavior (SIB) or aggressive behavior (AB).”
In other words, the FDA wants to make it illegal for anyone to manufacture or use a device that exists solely for the purpose of delivering a shock to disabled people in order to get them to behave.
This has happened before. The FDA issued this same ban in 2020. But it was challenged in court by the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts. In the new proposed rule, the FDA points out that the JRC is the sole manufacturer of and only facility to use the device. In 2021, a federal appeals court struck down the ban. The ruling said the FDA did not have the authority to ban the use of the devices for a specific purpose rather than banning their use altogether. Thus, in 2022, Congress passed legislation clarifying that the FDA does indeed have the authority to do what it did.
We’ll see if that clears the way for the FDA to do it again.
For more than a decade, disability activists who consider what the JRC does to be akin to legalized torture have been protesting against the JRC and pushing for the FDA to end their practice of using electric shock on their residents as a means of behavior modification by issuing a ban. In 2014, after receiving a flood of public complaints about the use of shock by the JRC, the FDA convened a panel to recommend what the agency ought to do. Then, two years later, the FDA published the proposed rule that eventually led to the official ban.
Jennifer Msumba/Wikimedia
A drawing by a former resident of the Judge Rotenberg Educational Center depicting the punishment of GED shocks while restrained to a four-point board. According to the artist, residents sometimes received multiple GED shocks while restrained to a four-point board as punishments for standard infractions.
But that process took four years to play out. Something similar could happen again because the period to submit comments on the proposal is open until May 28. Then, the FDA will need to review and consider comments before taking further action.
This battle is likely to continue for who knows how long. Even if the FDA does eventually issue another official ban, the JRC will probably challenge it in court again. In a statement praising the 2021 court decision, the JRC called the use of shock “a treatment of last resort” that is only used to subdue residents who are posing a threat of physical harm to themselves or others. “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 new FDA proposed rule says there is a better way. “State-of-the-art treatments instead include conducting a functional behavioral assessment to determine the causes and triggers of self-injury or aggression, then using that information to design a plan with supportive approaches, consisting of multiple elements, to modify the behavior . . . . These approaches have generally been successful, even for some of the most difficult cases. The use of ESDs was mostly abandoned decades ago, in part because the shocks can be painful or very painful for the recipients.”
So maybe one of these years, torturing people with disabilities for any reason will finally be officially deemed unacceptable.