My penultimate book of the year, and the final book in my 2013 Bingo Card. Louisa “Lou” Clark loses her job as a cafe and has to take a job as a care assistant for a rich playboy adventurer who’s ended up paraplegic in a wheelchair after an accident. He’s absolutely vile to her at first, but they gradually develop a friendship and an understanding. Then Lou realises that he plans to travel to Switzerland to commit assisted suicide at the end of her six month contract, and decides she needs to change his mind.
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.
This is considered one of the great examples of romance literature, and it’s been in the top 10 of the top 100 romance novels polls on All About Romance since 2000 (in 1998, it was rated 15th). When romance reviewers are asked to name their favourite books, it keeps being mentioned, and raved about, and I just never seemed to find the time to read it. Written in 1992, it’s considered one of the works that really changed the genre (away from the frequently No means Yes rapey/forced consent romances into closer to what it is today). It’s also a wonderful book to give to someone who claims romance is just trashy escapism for frustrated, sex-starved housewives. This is about as far from 50 Shades of Grey as you can get.
So what is it about then, you ask? Christian Langland, the Duke of Jervaulx is a dissolute rake if ever there was one, but he’s also a mathematical genius, which is why Quaker spinster Archemedea Timms comes into contact with him. Her father, another mathematician, is blind, and Maddy (a necessary nickname if ever I heard one) writes out all his notes and takes them to the duke, and in turn reads all the duke’s notes to her father. Then they hear that the duke’s been killed in a duel, after an aggrieved husband called Jervaulx out. Maddy discovers this isn’t true when she arrives at her cousin’s posh mental asylum in the countryside, and finds Jervaulx locked up, senseless and in chains. She quickly realises what no one else has been willing to consider, that he’s not mad but maddened, and that he’s clearly in his right mind, just furious at being unable to communicate with those around him. A modern reader can see that Jervaulx has suffered a stroke, but it’s not at all surprising that the duke’s relatives would want him locked up and declared insane, so they could take over the running of his estates.
Maddy, despite being deeply uncomfortable with the Jervaulx’s position and his dissolute lifestyle, believes herself to have received a calling from God, to help him. She stubbornly convinces her cousin (who for all the horrors of the asylum really is quite progressive, for the time) to let her tend him, and surprisingly rapidly, the duke is calm and compliant and even able to leave his cell on occasion. They grow increasingly closer the more time they spend together, with Jervaulx coming to depend on Maddy entirely. He has no way of communicating the amount of abuse he suffers from the other minders at the asylum, and realises that he can’t risk them feeling threatened. He finally recovers enough that they deem him ready for his competency hearing, and take him to London, where most of his family still believe him completely addled. Only his battleaxe of an aunt believes him to be on the way to recovery, but she’s worried about the reputation of the family, and wants Jervaulx to marry to secure the title. If he won’t agree to matrimony, she’ll have him shipped back to the asylum. Jervaulx has no intention of marrying anyone save Maddy, his rescuing angel, but her religious beliefs make such a union completely impossible. Full review on my blog.
This youth lit novel is told from the point of view of 11-year-old Melody, a fifth grader at Spaulding Elementary. She is concerned about the same things other kids her age are — clothes, music, dealing with parents, a little sister and fellow classmates. But Melody is different. She is wheelchair-bound and non-verbal. Melody has cerebral palsy and has been relegated to a special ed classroom for most of her life because her inability to speak is interpreted as an inability to think or form coherent thought.
Melody is, however, a precocious, whipsmart girl. She is in love with words and has a photographic memory. Her life begins to change when the school starts to promote inclusion in the regular ed fifth grade and Melody gets an assistive communication device. Her intelligence and humor come out, but her relationships with typical peers remain problematic.
Draper creates a sympathetic character and a couple of plot devices to tug at your heart. The climax involves a disappointment for Melody that will make your blood boil. As a parent of special needs children, one of whom uses a talking device, I feel Draper does a fine job portraying the life of the special needs family. I completely identified with the parents’ fears, frustrations and anger, their tiredness and their joy at Melody’s achievements.
The relationships Melody has with a neighbor and with fellow students are particularly relevant to the title of the book. Mrs V is the one who helps Melody get her thoughts out of her mind and into the world first with cards and then with the device. Classmates seem to keep Melody and her humanity out of their own minds. Even the nice ones seem unaware of her feelings. They fail to recognize that despite appearances, she is just like them in many respects. It never enters their minds. Melody has an epiphany herself regarding her fellow special ed students, too, coming to see the loveliness and goodness of each.
This is a great book for kids to learn about and discuss disability, equality, and inclusion.