State lawmakers heard emotional testimony in a hearing Monday over efforts to ban the use of electric shock devices on people with disabilities.
The bill, sponsored by state Rep. Danielle Gregoire of Marlborough, was filed to address controversial practices at the Judge Rotenberg Center in Canton — the only institution in the country to shock disabled residents as way to control behavior.
Center officials and supporting families say the process has been lifesaving for people with severe disabilities. But the practice has long received waves of pushback from disability advocates who say it’s painful and cruel.
The Act Regarding the Use of Aversive Therapy would “prohibit the use of procedures which cause physical pain or deny a reasonable humane existence to persons with disabilities.” It is meant to ban a device known as a graduated electronic decelerator, or GED, that the center that has been using for decades.
Jennifer Msumba, a former student, told lawmakers, that she was admitted for self-harming and obsessive behaviors in 2002 and left seven years later. She said the GED was often used on her as well as other aversive therapies, which are defined as practices used to dissuade someone from a habit with negative stimuli.
“I was terrified, on high alert, causing anxiety, sick to my stomach, couldn't eat, couldn't sleep,” she said. “I was denied food as a result of my minor behaviors and purposely put into instigating environments that they knew would upset me and could create my behaviors they could shock me for.”
Msumba says she still hasn't recovered. She says she has been diagnosed with post-traumatic stress disorder and needed to seek out special therapy.
“I have had nightmares for 14 years,” she said. “Every night I wake up screaming — I scream, ‘No, stop.’”
Federal efforts to ban the use of such devices have so far stalled. Legislation to reform the use of the device has been introduced several times on Beacon Hill over the last 10 years without success.
Monday’s hearing comes after the state’s Supreme Judicial Court narrowly ruled in September that the facility could continue to use the device.
Nancy Weiss, co-author of a book on the history of the center, has advocated to end the practice for decades. She told lawmakers that people she interviewed who had the device used on them reported it as “the most painful thing [they've] experienced.”
“Adding to the human rights concerns, the device is known to malfunction, shocking people in error or shocking a person over and over and over again until staff can get to the back to disconnect the wires,” she said.
Others testified in support of aversive therapies. Among them, Marty Emmick, of Middleton, said his daughter has been receiving treatment at the center for the last 15 years for behaviors that pose a harm to herself and others.
“She is now safe and stable,” he said. “We love our daughter and always want to do the very best for her. If our daughter left [the center], we strongly believe she would be in a locked down psychiatric facility or in jail due to her aggression.”
Nathan Blenkush, the center's clinical director, said that for some patients, the GED is the only effective option.
“Some of our patients have struck themselves in the head thousands of times a day, causing blindness and injury,” he said. “Some of our patients have banged their head on the floor walls, tables or through glass windows of their school and school bus or van...other patients have lost body parts, fingers, tongues, bitten holes in their cheeks, or they have chronic wounds on their body from biting or gouging or picking their skin.”
The bill also would ban practices like pinching and hitting, and would guarantee access to things like food, water, shelter and bathroom facilities, regardless of disability or behavior. It would apply to all centers in the state that house people with disabilities, including long-term care facilities and veterans’ homes.