BOOK REVIEW: SUSAN NUSSBAUM, GOOD KINGS, BAD KINGS
My writer friend Sandra, a voracious reader, introduces me to many books I might not otherwise see. Some of them take me into a world I have never thought about.
Good Kings, Bad Kings by Susan Nussbaum is a novel set in the Illinois Learning and Life Skills Center, a nursing home for severely disabled children. It is a novel with a purpose, to let disabled characters speak for themselves.
Nussbaum believes such institutions “need to be done away with, once and for all” click. But unlike so many writers with a cause, who hit you over the head with a righteous bludgeon, Nussbaum never seems to be preaching. She creates a fully realized world and gripping plots, and though she writes from the point of view of seven different characters, she mostly makes it work. I wasn’t far into the book before I recognized their vivid individual voices, and no longer needed to flip back through the pages to see who was who.
Three of the speaking characters are teenaged residents of the Center, three are employees, and one is an employee of the health care corporation which owns it. Her job is to recruit new residents, and investigate Center operations to find cost cutting opportunities.
The teenagers don’t define themselves by their disabilities, though the world may do so. They are typical teenagers – falling in love, mischief-making, yearning to be understood. They resent authority and scorn the adult world.
A FAMILIAR TEEN LOOK. IMAGE OF LINDSAY LEE USED WITH HER PERMISSION click
Listen to Yessenia, the fiercest and funniest of the gang. She is a bad-ass 15-year-old who has just been released from juvenile detention. Her aunt who was raising her is dead, so she is placed at the Center, and attends Herbert Hoover High School.
I went there on account of I am physically challenged, and they send the people which have challenges to Hoover. They send peope with physical challenges, but also retarded challenges, people been in accidents like brain accidents, or they’re blind or what have you. I do not know why they send us all to the same place but that’s the way it’s always been and that’s 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.
PUERTO RICAN DAY PARADE. IMAGE:LATINO.FOXNEWS.COM
Moving into the center is a shock for Yessenia.
They got the most stupidest rules in here that I ever heard of…You’re not allowed outside the damn building alone without passing another one of their bullshit tests. By ‘outside the building’ they don’t mean plain old outside either. They mean outside like ‘stay on the grass in front of the door.’ They think you’re too stupid to even walk out the door on your own. I was raised in the city. I grew up in the Puerto Rican ghetto. I think I know how to walk outside a damn door…you’re not allowed alone on a bus – a regular bus that I been taking by myself since I was a child – without a houseparent. This is almost worse than Juvie. At least at Juvie you were suppose to be punished.
ACCESSIBLE CITY BUS. IMAGE:FCGOV.COM
Joanne, a disabled woman, is a data entry clerk at the center, who is connected to the Center for Disability Justice. She befriends some of the residents, and hopes to get them the subsidies the law provides so they can live independently when they reach 22. Yessenia learns about disability activists from her, and when a boy dies after being scalded in the shower, Yessenia takes action. She chains herself to a tree with a sign “They kill and abuse children here.”
IMAGE: MIUSA.ORG click
DISABILITY PROTEST IN CHICAGO. IMAGE: NGA.ADAPT.ORG click
In response to the death and Yessenia’s protest, the board of directors hold a damage-control meeting. Michelle, the recruiter, takes notes.
[The lawyer wants to] take the emphasis off the small number of children who die [and emphasize] the very large number of children who live…I write down, “Most children stay alive here.”
Cost-cutting means most employees wear several hats. Ricky, the Center’s bus driver, also has to restrain the children or take them to the time-out room when they misbehave. He and Joanne become lovers, and he tells her
All I do all day is punish these children…When we’re in the bus – when me and the kids are in the bus everything’s cool. We got our own little kingdom, you know? But more and more all they want me to do is lock them up or hold them down and I hate it. I hate it.
And Joanne says to me, ‘ Maybe you need to think about getting out.’
I’m like, ‘ Yeah, but then I think they’ll get some other gorilla instead of me and at least if I’m doing the job it’s one less psycho messing with them, you know?’
‘Raping them,’ she says.
Neither one of us talks for a while after she says that.”
We hear from the child who is being repeatedly raped by one of the aides. We hear from Teddy, the man who is in love with her, He is almost 22, and looking forward to independent living.
I’m starting to save my allowance up. It’s part of my plan for running away. I saved last month’s allowance for a week…but then Louie stole it. I know it was Louie cause he’s a asshole and I had it the night he worked and next morning it was gone. I had it under my seat cushion and he was the one who plugged my wheelchair into the charger after I was in bed. It don’t do no good to complain. They just say ‘I didn’t do it…’ and you can’t prove it they did.
When I’m on the loose I’m gonna get a place to live and an aide. I’m gonna go to bed as late as I want. I’ll eat dinner when I want. I’ll have beer. I’ll take the bus wherever I feel like it….
The day I turn twenty-two they want to ship me off to a old people’s home. They’re going to stick me with the grandmas and the grandpas….So that’s why I got to run.
HIS MODEST AMBITION
We all begin life needing twenty-four hour assistance. Those of us who are lucky gradually become more and more able to do for ourselves. And then if we live long enough we may again need assistance.
Only the richest of us can afford a personal care attendant twenty-four hours a day, and society as a whole is not willing to subsidize such private care. So we establish institutions, where we can achieve economies of scale, and then we try to avoid looking inside to see how those economies, and the additional economies of the profit motive, play out.
A RESIDENTIAL FACILITY
We only value personal care-giving if it is provided free, by loving family members, usually women. Because care-giving is valued in sentiment rather than dollars and cents, we pay abysmally low wages to those who give care, and profit-driven corporations cut costs by reducing staff to dangerous levels. The alternative, of funding well-paid assistance in individuals’ own homes or small group homes, seems too costly for us to bear.
I have quoted extensively from the book, because I really hope you will read it. You’ll laugh, you’ll cry, you’ll want to throw things. Nussbaum opens the doors of a dreadful place. She shows us lives and circumstances that most people have never seen. But though the book is horrifying, it is not depressing, because the characters are so impressive, and because things look pretty hopeful for some of them at the end. I feel lucky to have heard from them.