A group of about 50 people, from across the country, protested in front of Health and Human Secretary Alex Azar’s Indianapolis house recently. The national group ADAPT has worked for disabled rights since the 1970s and the Indianapolis protest focused on an electric shock device one institution uses to enforce behavioral plans – even after the device was banned by the FDA. Indiana Public Broadcasting’s Jill Sheridan spoke with ADAPT member Cal Montgomery about the group’s efforts to start a dialogue with Health and Human Services and the FDA.
Sheridan: What happened outside the house of Alex Azar? There was an event there yesterday.
Montgomery: Yes, there was. We’ve tried repeatedly to talk to Alex Azar and to Commissioner Scott Gottliebof the FDA and the institution itself. We’ve sent letters, we’ve done emails, we’ve asked for appointments, we’ve visited offices and nothing’s happening. So, finally about 50 of us from across the country came out to Indianapolis. And [Sunday] morning we went to his house and knocked on his door and he didn’t come out. We stood there, chanted and talked about the issue. And eventually, the police came and removed.
Sheridan: How many people were arrested?
Sheridan: And forcibly, some.
Montgomery: Yes. Uh, there was two people were dragged out. After that it got much more calm.
Sheridan: Now, tell us what the issue is. This is all the #StopTheShock?
Montgomery: Well, ADAPT’s core issue is basically getting our people out of institutions. We want to create a world in which nobody’s forced into an institution that doesn’t want to be. But this one institution, the Judge Rotenberg Center, in Canton, Massachusetts, not only are these people institutionalized and put through a fairly rough behavioral program, that we oppose in general. But, one piece of the behavioral program still is, they strap electrodes to people’s bodies, up to four at a time. People then have a device in a backpack that they wear 24 hours a day – in the shower, in bed, at all times. And staff have remote control devices that they use to shock them if they violate the behavior plan. We’ve heard reports of people being shocked for closing their eyes for 15 seconds, or people being shocked for standing up before asking for permission to leave the room.
This is a group of people, it is primarily autistic people, enormously people of color, and almost entirely people from out of state. And this has been going on for 30 years. We – the disability community – have been fighting it for 30 years. And two years ago, in April of 2016, the FDA said, we have written regulations to ban it. It is dangerous, it is unsafe. It causes physical pain, it causes emotional suffering. And then we waited. And so we finally said, we’ve got to take this directly to Alex Azar – short of [President] Donald Trump – this is the man who has the power to stop it. Who we are fairly sure they’re at least hearing us and are aware of our concerns by this point.
Sheridan: Hearing you, understanding that you want things done and doing that through protests, civil disobedience.
Montgomery: Yes, ADAPT is born out of the independent living movement, which took a great deal of its history from the civil rights movement. We also understand that it’s a big deal to arrest people in wheelchairs, and many of us are in wheelchairs. Indianapolis apparently has one van with one lift to arrest us which is not easy to do if you have to arrest 20-something protestors in wheelchairs that you have to transport downtown.
The other thing is many of us have been institutionalized, all of us aware of the threat of institutionalization, it could happen to any of us simply because of who we were born. And we are free people, we choose how we live, we choose what we do, and we choose to do this work because it is important to us. It looks like a big deal to outsiders, but to us it’s a gift.
Sheridan: What is at the core of the goal of ADAPT?
Montgomery: Right now, our big concern is getting out of institutions. Right now, if you have a certain level of disability in this country and you are on benefits you have guaranteed funding to live in an institution, but you are not guaranteed to live in a community and get the supports there. Even though people like it better, they have better outcomes, they live longer, they’re healthier, it costs significantly less money, it cost roughly, according to the AARP, a third as much to support someone living in the community as an institution.
We’ve worked on other issues, we’re the reason you have lifts on buses today. I got here to Indianapolis on the Greyhound bus. The only reason I can do that is because ADAPT protesters were out there in the streets blocking the buses, demanding lifts on the buses. So we’re trying to build a society to have what we need so we have to have the same kind of lives as everyone else.