Archives for July 2014

Good Kings Bad Kings

Good Kings Bad KingsWith Good Kings Bad Kings, author Susan Nussbaum succeeds spectacularly in writing about disabilities from the viewpoint of people who live with them.

The disabled teenagers in the book make it clear in beautiful chapter-long monologs that they are just like everyone else. They want to be accepted and to be treated with respect; they want friendship and love and sex. They want to live as independently as possible and to have control over their own lives.

The book also is told from the viewpoint of staff members at the nursing home where the teens live. The workers describe how they handle overwhelming responsibilities but receive low pay and minimal training. They also describe the behavior of other employees, who don’t have the temperament to work in a nursing home and so they abuse the kids physically and verbally.

Horrors and justice

I was struck by the helplessness and vulnerability of some of the teenage characters. One severely disabled woman is repeatedly raped by a staff member. A young boy with ADHD who acts out in class is thrown into the time-out room and denied food after his teacher humiliates him in front of the other students.

There are more horrors in the book, but there are also tales with happy outcomes. The “bad” guys get arrested or fired. And some of the teens find the love and intimacy they yearn for.

The author, herself a wheelchair user, wrote the book to give disabled people a voice. She believes that people like her are not accurately portrayed in literature, film and in the general media.

“The way disabled people are represented by the dominant culture is most always as a foil for the nondisabled protagonist,” she says. “They’re in the story so the nondisabled person ‘can become a better person.’ Once the disabled character fulfills that role, they’re usually killed off, miraculously cured, or institutionalized.”

“Medieval Concepts”

Nussbaum also points out that in the case of kids with disabilities who live in an institution, it’s the adults who have all the power. “…when the adult in question has no emotional connection to the child, and the child’s welfare is turned over to that adult – as is the case in many institutions – terrible things can happen.”

I was also interested in her views on why these conditions exist even though many people who work in institutions have good intentions. She calls nursing homes, mental hospitals and residential facilities for people with disabilities “medieval concepts” that need to be done away with. The problems she writes about are systemic to institutionalization.

Even though the book has many tragic tales, it is told with an honesty and balance of humor that makes it very readable. I zipped through this excellent book in about three days. I highly recommend Good Kings Bad Kings.

[Author’s note: Not everyone affected by disability believes that institutions should become a thing of the past. Wendy English, a woman who lives in the Woodbridge Developmental Center in New Jersey, has a different perspective than Susan Nussbaum.]