Taking a stand for humaneness, dignity and basic human decency.
On March 25th, the U.S. Food & Drug Administration (FDA) proposed a ban of electrical stimulation devices (ESD’s) intended to address self-injurious or aggressive behaviors. ESD’s, which are capable of delivering unsettlingly potent electric shocks, have been in use at the Judge Rotenberg Educational Center (JRC), a school located in Canton, MA, only two towns over from where I live in MA, for decades now. The JRC is the only institution in the U.S. known to use these methods on its autistic, intellectually and developmentally disabled students for behavior modification purposes.
Today, in 2024, in the United States, and taxpayer-funded!
In this case, proximity matters, as does the fact that I am an autistic individual. Consequently, I have had to contend with more than my fair share of emotional unease in knowing what is transpiring only a few miles away and in understanding that I could have been victimized there, granted my identity, had my life followed a different trajectory.
I drive into Canton on a fairly regular basis, but only to those places which I know I can get to without passing the JRC. The risk of a meltdown is simply too great if I were to lay my eyes on this place, even for a split second. Not something I would want to have happen to me behind the wheel of a moving car. And so I choose to steer clear. That’s how emotionally invested I am in this injustice.
Remarkably, the FDA succeeded in banning ESD’s in 2020. Remarkable, because in a rightly ordered world, this ban persists, granted the extent of the harm ESD’s have inflicted on innocent, vulnerable, disabled individuals. But the 2020 ban did not hold up. In 2021, the Washington D.C. Circuit Court of Appeals overturned it after the JRC filed a legal challenge. The primary reason: a technicality whereby the court determined that the FDA, under federal law, is prohibited from interfering in the practice of medicine, which is left up to doctors and other healthcare practitioners.
Not just any technicality, but one with a sizeable cost in human terms. So much for the D.C. Circuit’s concern for the wellbeing of those on whom the JRC’s Graduated Electronic Decelerator (GED) has been used. So much for the court’s capacity for empathy.
And here we are again with yet another proposed ban. Perhaps this one, if implemented by the FDA, will endure.
There is reason to be optimistic this time around. The 2020 ban was vacated based on the D.C. Circuit Court’s interpretation of the FDA’s authorities under the version of the Federal Food, Drug, and Cosmetic Act (FD&C Act) in effect at the time. Since then, Congress amended the FD&C Act in such a way as to grant the FDA the authority it did not have in 2020, to issue a ban specific to self-injurious or aggressive behaviors.
It is a privilege to be able to take a stand against what is arguably a human rights violation before the very people with the power to actually do something about it. And so I seized the opportunity soon after learning that the FDA has invited the public to weigh in prior to a final decision being rendered. Digging deep and speaking from the heart, I commented as follows:
“Hello! My name is Sam Farmer, autistic writer, author, public speaker and anti-aversive advocate. I am writing in strong support of the FDA’s proposed ban of Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior, issued on March 25, 2024.
A ban on ESD’s which, unlike the previously issued ban from 2020, is able to hold up on appeal, is long overdue. Why? Because torture, which is how the United Nations appropriately described the use of ESD’s, is not the way to go about trying to teach or help somebody unless one thinks that PTSD, fear, anger, anxiety, depression, physical pain, and burn marks are helpful outcomes. Any sane person would agree that behaviors that pose a danger to oneself and to others need to be addressed. But the end does not always justify the means, particularly if the latter entails electric shock. More humane and proven interventions have been available for some time now for those on whom ESD’s have historically been used.
The Graduated Electronic Decelerator (GED), currently in its 4th generation, refers to the ESD device in use at the Judge Rotenberg Education Center (JRC) in Canton, MA. An effective stun gun has an amperage range of 3 to 4.9 mA (milliamps). The GED ranges from a median current of 13 mA (the GED-1) to 26 mA (today’s GED-4).
As an autistic individual, I know firsthand how deep sensory sensitivities can run with others in my community for whom I proudly advocate. Granted this reality, and considering the extreme amperage level of the GED-4, try to imagine the extent of the physical, emotional and psychological anguish experienced by those JRC students on whom the GED has been used, misused and abused. These are innocent, particularly vulnerable intellectually and developmentally disabled people who need and deserve better.
Another reason why I am appealing to the FDA to see this ban through: under differing life circumstances, this could very well have happened to me. Many who have been victimized and dehumanized by ESD’s share my autism diagnosis. When the JRC’s students hurt, I share in their pain. When an injustice is leveled on them, that same injustice is leveled on me as well. Autistic and other intellectually and developmentally disabled individuals are as one community. What affects some of us inevitably affects all of us. Consequently, this issue has caused me more emotional unease than words can express.
Lastly, I ask that the ban apply to ALL ESD’s that may be used for the purpose of any kind of behavior modification. Autistic individuals do not need to be forced, or tortured, into becoming more non-autistic. What we need instead is to be treated with greater acceptance and with basic human decency.
The decades-long legacy of electric shock behavioral interventions is arguably a stain on the United States’ record on human rights. Please end up on the right side of history and put an end to use of ESD’s once and for all. Thank you!”
If not now, then when? If not the FDA, then who? I am only mildly optimistic because a multitude of efforts over the course of too many years by the anti-aversive advocate community, professional organizations, government officials and others have fallen short of ending the use of ESD’s. The JRC’s allies, lawyers, lobbying activities and financial resources have helped maintain the status quo.
Even if the current ESD ban proposal is enacted by the FDA and manages to persist, the regrettable truth is that aversive methods other than electric shock will continue to be used at the JRC. The withholding of meals, ammonia sprays in the face, spankings and sensory deprivation are among the interventions that have historically been leveled on the school’s students. As such, doing away with the JRC’s Graduated Electronic Decelerator would amount to a half-measure, although certainly a big step in the right direction.
All of us feel pain. All of us deserve to be treated humanely, with dignity, and with basic human decency. As they have done before, the FDA needs to act in accordance with these principles, and the judicial system needs to follow suit should they be asked to do otherwise.