Institutionalization

JOAN RINGELHEIM: Is there more that you want to say about institutionalization, given what you saw in the exhibition? And I know in your book you talk very much about being frightened for yourself.

HARRIET MCBRYDE JOHNSON: Yeah. Well, in another article I did for the New York Times, I talked about the “disability gulag,” and I expected to hear from a lot survivors of the Soviet gulag, and I didn’t, using that metaphor. To me, of course there are similarities and differences. But I think it’s important that we start thinking about the very existence of institutions as a human rights violation that we’re ignoring because they were created not to help us, not to rehabilitate us, but to isolate us. That was their function. And over the years, nowadays they are called training homes, they are called by a variety of names, nursing homes I guess are the biggest part of it now. But really what they’re about is isolation and control. And I think that we need to look at that and to understand that nobody should ever have to be confined to a place where they have no freedom because they need help. Places like that are for people who need control. And in our society we have forgotten that it’s possible to give people assistance, care, all of that, in other settings. We just don’t know that that’s possible. And particularly with the aging population. I had a friend who is an old socialist, you know, on the barricades, fighting for freedom, and she told me one time, she says, “I don’t want to live past my ability to take care of myself because I don’t want to go in a nursing home.” And I said, “wait a minute. That’s not the way it is. Why don’t we fight to get someone to take care of you physically?” People don’t recognize that.