A novel about disabled youth living under abysmal conditions in a sub-par nursing home in Chicago sounds mighty depressing and perhaps not the kind of thing you’d want to dive right into. This novel, however, the winner of a PEN/Bellwether Prize for Socially Engaged Fiction, is one of the better novels I’ve read this year and tackles a very serious, sometimes tragic, topic with intelligence, compassion and, yes, even humor. Nussbaum allows seven of her characters to take turns relating to the reader their personal histories and experiences at ILLC — the Illinois Learning and Life Skills Center. ILLC is one of several nursing homes that the state has placed under the supervision of a private company called Palm-Whitney. ILLC is understaffed, and while some staff are conscientious and compassionate toward their patients, others clearly have no business being there. Abuse and negligence lead to several tragedies and, eventually, serve as a catalyst for change not just at ILLC but among our characters as well.
Three of our narrators are disabled youths who are in wheelchairs. Yessenia is 16. She is an orphan who has taken the loss of her beloved Tia Nene very hard, but she hides her sadness behind a tough, street-fighter kind of personality. She is fabulous and has some very funny lines in the story, including, “Milwaukee is different. It don’t look like Chicago too much but you could kinda tell it’s supposed to be a sort of city.” Mia is sweet and quiet and has been abused for much of her life. Teddy, age 22, is Mia’s boyfriend. He wears a suit every day and dreams of living independently but ILLC’s plan is to move him to an adult nursing home. Teddy resents the treatment that he and his friends receive at ILLC and engages in acts of subversion to protest. When an aide told his friend she would never get a job because she was “retarded,” Teddy tells the reader, “That’s not nice to say and I’m against the R-word. I put Vaseline on her cigarettes.”
The other four narrators are adults. Michelle works for Palm-Whitney as a “recruiter.” She visits shelters to try to recruit the homeless into Palm-Whitney institutions and gets paid a bonus for reaching recruitment goals quickly. She also visits Palm-Whitney nursing homes and files reports, a job which eventually leads her to question her dedication to her job. The other three adults work at ILLC. Joanne became disabled as an adult and works on data entry in the office. She is connected to the disability rights community and is concerned about the conditions she sees at ILLC. Ricky drives the van and helps inside the building as well. He sees first hand the physical abuse that some children suffer at the hands of aides who seem to be on a power trip. Jimmie (female) is an aide who develops a special friendship with Yessenia. These three are decent and conscientious people who care about the kids and the kids respect them in return.
For those unfamiliar with the disability rights movement and the push for community living and integration instead of institutionalization, the novel serves as an educational tool. Nussbaum shows that not only has our treatment of the disabled not improved, it has in some ways gotten worse. Yessenia tells of an aunt who had developmental disabilities but who lived with her family until she died. “She was a hard case, Tia B., but we had a lot of fun with her. You know, we didn’t know any better…. By now, we should know better how to treat them.” Joanne frequently notes that being in a wheelchair causes others to either ignore her or treat her as a child. And the abuses that occur in this novel — rape, physical abuse, death, Medicare/Medicaid fraud– could be taken right from today’s headlines. The novel, despite the heavy themes, does end on a somewhat optimistic note and I hope it makes readers run to support their local disability rights advocacy groups.