In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:
- “Stop the shocks!” at the Judge Rotenberg Center
Please note that this text is only a script and that our webcast contains additional commentary.
“STOP THE SHOCKS!” AT THE JUDGE ROTENBERG CENTER
- As we come to the end of Autism Awareness Month, we decided to highlight another one of the Autistic Self-Advocacy Network’s campaigns. “Stop the Shocks!” was created in response to treatment of disabled people at the Judge Rotenberg Educational Center in Massachusetts. The “school” and residential facility – also known as the JRC – was founded in the 1970s. Disability activists have been trying to shut the JRC down since the mid-1980s.
- It is best known for housing autistics, people with cognitive disabilities, and those with behaviour problems, though “students” with more “mainstream” conditions (like, ADHD and OCD) now make up about half of the Center’s population. The majority are people of colour, and many have been involved with the justice system.
- The JRC has become infamous for the use of “aversives” – in other words, punishments for undesirable behaviour. The most well-known is the use of painful electric shocks. These shocks are delivered through a device called a GED worn in a backpack and connected to electrodes on the person’s torso and limbs. Staff activate the shocks through a remote control. Although the administration compares the shocks to a bee sting or a rough pinch, recipients are often left with burns and scars. Another common penalty is the withholding of food; depending on a person’s “behavioural plan.” Missing meals may be made up in the evening with an unappetizing mix of spinach, chicken, mashed potatoes, and liver.
- Residents are punished for minor behaviours like talking to oneself, stimming and hand waving, saying “no” to staff requests or demands, not answering staff members’ questions quickly enough, or tensing up at the thought of oncoming pain. These are all considered to be warning signs of potential self-harm or aggression towards staff.
- Years after leaving the Center, former residents describe symptoms of post-traumatic stress disorder, including nightmares and anxiety, that resulted from use of the GED. An anonymous testimony posted on autistic advocate Lydia Brown’s blog stated that staff “would often shock us for things simply because staff found them annoying, and they would keep writing therapy notes until our psychologist added it to our program. I got shocked for tic-like body movements, for which I have no control over, and which don’t hurt me or anybody else. I would be shocked for waving my hand in front of my face for more than 5 seconds, for closing my ears with my fingers, which I do when things get too loud, because I cannot tolerate too much noise…There was a period of time where I and many of the other students were getting shocked for having 5 verbal behaviors [like talking without permission, or clearing our throats] in an hour.” The electrodes eventually burned into the person’s skin and caused severe scarring. Four years after leaving the JRC, she still experienced nightmares and flashbacks.
- In 2011, the Massachusetts Department of Developmental Services ruled that “electric shocks [and] aversives that pose risk for psychological harm” could not be used on new students. However, anyone who came to the JRC before 2011 could still be shocked.
- Earlier this month, ASAN collaborated with the disability rights group ADAPT for two weeks of protests in Washington, DC, including a demonstration outside the home of Dr. Scott Gottlieb, commissioner of the U.S. Food and Drug Administration. The FDA is responsible for ensuring the safety and effectiveness of new drugs and medical devices. In 2016, the FDA issued draft regulations that would ban the GED, but the final rule has never been issued. The UN’s special rapporteur on torture also called for an end to the practice in 2012. To date, nothing has been done.
- The lack of action is yet another indication of the disconnect between disabled people and their nondisabled relatives. One parent of a JRC resident claimed that the shocks have made her son “a civilized human being”. Many parents claim that aversives are the only effective way to prevent disabled children and adults from injuring themselves and others. In reality, any changes in behaviour are motivated by fear of the shock device, or the person controlling it, and usually only continue as long as the aversive technique is used.
- Support for the Centre is also justified through two common misconceptions – first, that institutions are more suitable for disabled people than life in the community. Second, that accounts of abuse from people with cognitive disabilities, neurodiverse people, and nonspeaking people are unreliable.
- In fact, research over the past 50 years has shown that integrating disabled students into mainstream classrooms (with adequate supports) and positive approaches to dangerous behaviour have better long-term outcomes. Positive Behavioural Supports:
- Attempt to understand the meaning or usefulness of a behavior;
- Offer the person a positive alternative;
- Use non-intrusive techniques;
- Offer strategies that have been validated and are appropriate for use in integrated community settings.
- Disability advocates recognize that stimming and other “noncompliant” acts are natural human responses. As well, the claim that disabled victims and witnesses are unreliable has been debunked through the use of adaptive interview techniques to enable the person to communicate effectively.
- At least twelve US states have banned the use of aversives. Advocates are not convinced that a similar ban in Massachusetts will shut the school down, since it has moved before. (The JRC came to Massachusetts from Rhode Island in the 1990s.) Intervention from the federal government might be the only way to stop the shocks.