Electric Shock “Treatment”, Today, in America, on Intellectually and Developmentally Disabled People: An Autistic’s Perspective
In the absence of empathy, injustice often surfaces, and the basic needs of those who wrongly pay a price for that injustice tend to be unfairly neglected.
In a letter written to the US Food and Drug Administration (FDA) in 2013, Jennifer Msumba, autism community self-advocate and then former student of the Judge Rotenberg Educational Center (JRC) in Canton, MA, appealed to the agency to reconsider their approval of the Graduated Electronic Decelerator (GED), an electric shock device the JRC used on her and on other developmentally disabled students as a means of “treatment” to inhibit behaviors the school considered toxic. Msumba describes her experiences with the GED devices in these terms: “so many of us were tortured…searing pain…anxiety, day after day for years on end…my fears came true one day, and I was given a GED-4 shock while I was asleep…shocks for loud, repetitive, disruptive talking out…scream…cry…I was shocked for behaviors I had no control over”.
Thanks in part to Msumba’s revelations, the FDA banned the use of electronic stimulation devices (ESD’s), including the GED, on the grounds that they posed too great a risk of illness or injury. The ban was finalized in 2020, only to be overturned by the Washington D.C. Circuit Court of Appeals after the JRC filed a legal challenge in 2021. The primary reason: the FDA, under federal law, is prohibited from interfering in the practice of medicine, which is left up to doctors and other healthcare practitioners. As such, the JRC, a publicly funded institution, continues to administer electric shocks.
The D.C. Circuit Court’s overturning of the FDA ban required that electric shock treatment be subject to government regulation aimed at rendering it a strictly “last resort” intervention. For example, if a JRC student exhibits an injurious behavior for which there is no other remedy. But can any government regulation realistically be expected to always deliver on the outcome it endeavors to achieve? In the case of the GED, when regulation falls short, device misuse and abuse set in. Jennifer Msumba’s experience is a case in point.
An effective stun gun has an amperage range of 3 to 4.9 mA (milliamps). The GED, which the JRC helped design and admits to using as a means of behavior modification, ranges from a median current of 13 mA (the GED-1) to 26 mA (the GED-4, which was used on Msumba while asleep). Understandably, electric shock is illegal when used on inmates at maximum security prisons and prisoners of war. Why is it legal when used on JRC students?
The JRC has publicly defended its use of electric shock treatments, stating that they are effective at reducing extreme behaviors to near zero levels, enabling students to learn new skills. They minimize or eliminate the need for psychotropic medications and mechanical restraints which they say are often ineffective and more dangerous with respect to side effects. The school touts a record of students learning to live to their full potential. But at what cost to individuals, to society?
A book published in 2021 entitled Pain and Shock in America chronicles the decades-long use of electric shock treatment and other aversive interventions on students enrolled at the JRC and at the same institution under its prior name, the Behavior Research Institute (BRI). The JRC is the only institution in the US which continues to administer such treatments today. The BRI was founded in 1971, maintaining from the start that aversive behavior modification methods were permissible when its students engaged in harmful behaviors. Some parents signed off on the use of aversives with the understanding that they would be used only under these circumstances. Jennifer Msumba’s experiences and those of these parents’ children illustrate otherwise.
Author Jan Nisbet and contributor Nancy Weiss describe the evolution of the use of aversive measures at the BRI/JRC. Prior to the use of electric shocks, interventions including the withholding of meals, ammonia sprays in the face and spankings were administered. The first electric shock device the school used, the Self-Injurious Behavior Inhibiting System (SIBIS), would eventually lead to the more potent generations of GED devices. As students became desensitized and ultimately unresponsive to the repeated use of a less potent intervention, a more toxic measure was deemed necessary. The outcome of the perpetual use of aversives and their intensification over time: behavioral suppression rather than remediation and ever-increasing student distress.
Ongoing disagreements within and between the legal community, government and professional organizations over the extent of the harm inflicted by the electric shock devices have allowed their use to continue. Vocal parents of students at the BRI/JRC who passionately defended the school’s methods found allies in probate and family court judges, including Judge Rotenberg himself. BRI/JRC lawyers succeeded in keeping its doors open, arguing that those who sought to shut it down were out for vengeance and were being driven by personal bias.
Multiple efforts have endeavored to put an end to the administration of aversives at the BRI/JRC: medical malpractice civil suits, widespread media coverage, the involvement of the United Nations and human rights organizations, ongoing activism on the part of the anti-aversive advocate community and government investigations, regulation and legislation. All of it, for naught.
When I first became aware of the story of the use of aversive interventions at the BRI/JRC, words cannot properly describe my emotional response, having realized that this could have happened to me. After all, Jennifer Msumba’s diagnosis is my diagnosis, that of Asperger’s Syndrome, an autism spectrum disorder involving relatively mild challenges in comparison to those diagnosed with moderate or severe autism. Msumba’s story could very well have been mine had it not been for my parents sending me elsewhere.
The programs my parents had me attend are among the many that successfully use positive and humane behavioral strategies with developmentally disabled individuals. As a young, not-yet-diagnosed autistic boy, I attended summer sleepaway camps intended for special needs kids. The worst punishment I had heard about at these camps and which I never saw happen entailed having our mouths cleaned out with soap. It never amounted to anything more than a warning perhaps because we were supervised by good-hearted counselors who understood our sensitivities and vulnerabilities, and generally treated us with kindness and respect. We benefited from several positive reinforcement strategies, for example, being awarded a pizza after having accumulated enough points granted to us by cabin inspectors for keeping our cabin clean. The better we performed in our day to day cleaning responsibilities, the more pizzas we enjoyed.
A society should be judged according to how it treats its most vulnerable citizens and on how it responds when evidence surfaces of abuses leveled on the vulnerable. In this case, the judgement is mixed. For those who have advocated for an end to the use of aversive interventions at the BRI/JRC, the judgement is one of praise for taking a stand for decency and human rights. For those in positions of power who have maintained the use of aversives at the BRI/JRC, the judgement is undoubtedly “guilty”, largely because of a deficit of empathy for students adversely affected by their decisions and actions and how innocent members of a vulnerable segment of the population have been dehumanized.
In the absence of empathy, injustice often surfaces, and the basic needs of those who wrongly pay a price for that injustice tend to be unfairly neglected. All of us, whether disabled or otherwise, feel pain. We all need to be treated with dignity. We long to be acknowledged when contending with hardship. The final sentence of Jennifer Msumba’s letter to the FDA strongly resonates: “I hope [this] will share a new perspective for you, the perspective of the ones that should matter the most, the human beings on which these devices are being used”. Hers is an appeal for greater empathy. May the next chapter in the story of the Judge Rotenberg Center bring a long overdue gesture of empathy toward those on whom the shock devices have been used, ideally resulting in their elimination.
