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.