Susan Nussbaum was a 24-year-old student in Chicago on her way to acting class when she was hit by a car. Now near 60, shes been confined to a wheelchair ever since, with only partial use of her arms. She became a respected playwright and a central activist in the citys disability rights movement. She describes herself as a furiously rebellious crip (as in cripple).
It seems necessary to lay out these details about Nussbaums background before discussing her first novel. But doing so runs the risk of suggesting that the story – about a group of kids with disabilities in a grim Chicago nursing facility – hammers the reader with a strident agenda. It doesnt. Or, rather, it does, but with a vein of irreverent humor and a cast of characters so well drawn that the political message goes down easy. Nussbaums novel, winner of the PEN/Bellwether Prize for Socially Engaged Fiction, not only shines a light on a segment of society usually ignored, in art as well as life, but its also a really great read.
The story is told through the eyes of seven characters, all patients or employees of this institution for adolescents with disabilities. The facility, called ILLC, is a place where, as a 15-year-old patient named Yessenia puts it, they send people with physical challenges, but also retarded challenges, people been in accidents like brain accidents, or theyre blind or what have you. I do not know why they send us all to the same place but thats the way its always been and thats the way it looks like it will always be because I am in tenth grade and I been in cripple this or cripple that my whole sweet, succulent Puerto Rican life.
The book opens with Yessenia, who has just arrived at ILLC after three months in juvie. She was sent there, she says, for aggravating assault, after fighting with a girl at school and whacking her in the face with her wheelchairs footrest. Theres also Mia, a timid girl with cerebral palsy whos been abused by her parents; Mias boyfriend, Teddy, a wheelchair-bound 21-year-old who always wears a suit and tie; Ricky, the bus driver and one of the few employees here who has the kids backs; and Joanne, who became a quadriplegic after getting hit by a bus.
Joannes observations are smart and wryly funny. Unlike anyone else at ILLC, she has money, thanks to a settlement with the Chicago Transit Authority. Shes aware that having cash makes her life immeasurably easier than that of any of the kids she sees on the job – she can hire her own driver, for instance, and live independently. There are poor people, she notes, and then there are poor disabled people. One of those things suck, but both together suck stratospherically.
All of the patients have little or no control over their fate. The most heart-wrenching passages in the book describe the abuse that continues for some of the more vulnerable kids at the hands of the staff. One insidious houseparent named Louie inexplicably has it in for some of the worst-off.
The story is broadened with the addition of Michelle, a shallow-seeming recruiter for Whitney-Palm Health Solutions, a for-profit company the state has hired to fill beds at its nursing facilities. Michelle gets $300 for every kid she successfully brings in, and she relishes praise from her sleazy boss. But Michelles perspective begins to change, and the young patients grow more assertive, as certain injustices become clear.
Maybe these kids dont have to be minor characters in someone elses story, which is how Joanne describes herself and other crips. Maybe, Nussbaum suggests, they can be the stars of their own stories if given an alternative to a system rife with neglect and corruption. Nobody, after all, would choose to live in the home described in this book, where a girl is sent to a bleak psychiatric institution on a managers whim, and another is immobilized for hours in front of a potted plant because shes been given a manual wheelchair she cant operate. If this is what it means to be award of the state, Yessenia says, you can have your award. I dont want it.