Inside institutionalization

Playwright Susan Nussbaum, 59, has written an eye-opening first novel that is already generating controversy among the providers who care for the thousands of American children with intellectual, physical and emotional disabilities. Good Kings Bad Kings, released from Algonquin Press this week, paints a damning portrait of life inside a taxpayer-supported, privately run institution for juveniles with severe disabilities.The book is set in the author's native city of Chicago. Nussbaum, a quadriplegic since 1978 after being struck on a city sidewalk by an errant automobile, left her job at Access Living, a disability rights advocacy organization, to devote herself to writing this work. Modern Healthcare Editor Merrill Goozner interviewed the 2012 PEN/Bellwether Prize for Socially Engaged Fiction winner about Good Kings Bad Kings.

Modern Healthcare: Today, most kids with severe disabilities are taken care of at home, yet some remain institutionalized. Whom are you trying to reach with this novel?

Susan Nussbaum: I am anti-institutionalization, obviously. The characters in the novel are struggling with the reality of the institution and how to make it better. Personally, I don't think that's possible. Even though I know there are good ones, I think the concept just doesn't work. It works more for the bottom line than for the people living inside. And it works for a dominant culture that is really disability-phobic in a lot of ways.

I know there are some very tough questions that need answering for people who have deeply significant disabilities. But I still don't think isolation is a reasonable alternative for anyone.

MH: Most of your characters are not like you—they have physical, mental and in some cases psychiatric disabilities. Is there a high correlation between physical and mental disabilities when it comes to which kids get institutionalized?

Nussbaum: It's all over the map. When there are intellectual and psychiatric conditions, there is no understanding about what it means for that person's ability to learn or their personhood. … I had a young woman working for me as an assistant who went to a segregated school where they weren't even taught the most basic skills. When I asked her why they didn't teach them anything, she said to me, 'Well, I'm retarded.' She may have had a low I.Q., but it made me start thinking about people whom I didn't consider as smart as me. I was stunned to understand the biases I had. People with mental disabilities can be very useful and engaged.

MH: How did you do your research for the novel?

Nussbaum: A colleague turned me on to a law journal study that included testimony from parents and children and staff inside of these institutional settings. The stuff was so brain-crackingly difficult to comprehend in its horror. I started collecting articles that came into my e-mail every week from other staff at Access Living who were working on a deinstitutionalization project that I was not a part of. They were doing some great work getting people out of these nursing homes.

The Government Accountability Office did a report on abuses of children in public schools where they discovered that 90% of the really bad abuse in public schools is aimed at kids with disabilities: kids being duct-taped to the floors or walls, really creatively sadistic things. There were congressional hearings. Some states were worse than others.

MH: Did you visit any of these institutions?

Nussbaum: I would visit kids in places. They didn't appear abusive to me. They didn't appear to be that great, either. It's a very high level of segregation. Some of the kids were bussed over to a disabled kids-only high school, but that was closed six or seven years ago. Now, all of those kids are divided up and sent to accessible schools, (but) all of the kids with disabilities would be off in separate classrooms, segregated from the rest of the school. … They had no special programs for them. Even if the kid wanted to join the chess club, they couldn't do that because there was no late bus for them.

MH: In the novel, you portray a female recruiter who is given financial incentives by the private operator to institutionalize kids rather than keep them at home. Have you seen this in practice?

Nussbaum: They have a huge incentive. Why would they continue to operate these toilets with state tax resources when it is much cheaper to let people live independently? There's a huge lobby against phasing them out—the nursing home lobby. They think this is these kids' only alternative. I don't think it is.

MH: Early in the novel, there is an incident involving sexual abuse of a teenage resident by a staff aide. Was that based on an actual report?

Nussbaum: I collected a lot of information. The stories I read were harrowing. I didn't even use in my novel anything close to the actual things I read in newspapers and other documents.

MH: But isn't there also the potential for abuse by home health aides that care for disabled kids when they are deinstitutionalized?

Nussbaum: I hear more about families abusing kids, or neglecting kids that are dependent on them for getting out of bed, getting dressed. We're a vulnerable population. But I think it's safer in the community than shut away in those places. Those places are something someone came up with a couple of hundred years ago. Is that what we want? Everybody who looks normal is free to walk around, and everybody else is shut away and really invisible. That may be what a lot of people want. But it's a complete violation of human rights.

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