Good Kings, Bad Kings

Susan Nussbaum

• Éditeur: Oneworld Publications
• Année: 2014
• ISBN:
  9781780743868
• Sujet: Letteratura
• Sous-sujet: Letteratura generale

'My first week I learned that people refer to ILLC as "illsee". Emphasis on 'ill'. The Illinois Learning and Life Skills Center may not sound like the name of a nursing home, but that's how they work it. Naming these places is all about misdirection. Inside, it smells, sounds, and looks like your standard-issue nursing home. Same old wolf but in a lamb outfit.' Told in alternating perspectives by a varied cast of characters, Good Kings, Bad Kings is a powerful and inspiring debut that invites us into the lives of a group of teenagers and staff who live at the ILLC. From Yessenia, who dreams of her next boyfriend, to Teddy, a resident who dresses up daily in a full suit and tie, and Mia, who guards a terrifying secret, Nussbaum has crafted a multifaceted portrait of a way of life that challenges our definitions of what it means to be disabled. In a story told with remarkable authenticity, their voices resound with resilience, courage and humour.

Joanne Madsen

Mrs. Phoebe says we get audited every year and the services the kids receive have to be in the database. There’s also the possibility of a surprise inspection by the state although she says that’s very unlikely because ILLC is so well managed. My immediate task is to enter everything on record starting from now and working backward to 2000. That’s over ten years of three-or four-inch-thick files per criplet.

The paperwork in the files is often illegibly handwritten, in pencil sometimes, has stains of unknown origin, or never made sense in the first place. Some forms were used for a few years and discontinued. Others were invented along the way. There’s no consistency to how they’re filled out—some people write three paragraphs and some write three words. Besides histories, the forms are supposed to record the health care the kids receive, the amount of medical supplies each kid uses, doctor appointments, counseling sessions, release-of-information forms, hospital stays, number of recreation hours spent, transportation provided. Number of pickles eaten, amount of air breathed, blinks per hour. I’m in the belly of the beast.

Mrs. Phoebe says they are changing over to a better system where the houseparents will input data onto computers themselves. She says all this will happen in about six months, but they have to get up to date. I ask who will train the staff in the use of the database and she says, “I thought you would do that.” I’m a dead man.

After a few hours of typing in all this minutiae my neck starts aching and my eyes get blurry whenever I look away from the computer screen. My pupils have dilated to the exact circumference needed to stare at black letters on a white screen. Looking down a hallway or at someone’s face is actually painful.

I have to tilt. My wheelchair has a miraculous tilt mechanism. I press a button and it tilts back. You can tilt back so far you’re actually looking at the ceiling. You can’t imagine the practical applications this has. Besides the obvious, which is comfort. Take the dentist, for instance. It’s bad enough to have to go to the dentist, but imagine having to ask him to help lift you out of your wheelchair and into the dentist chair. I mean, really. Inevitably one of your shoes falls off during the process and your clothes get all smashed up and then you get two or three hygienists in there apologizing way more than is necessary. Now all I have to do is tilt and cringe.

After days and weeks of nothing but forms and numbers, you’ll start to notice how certain forms you wouldn’t expect to see all that often seem to pop up quite a bit. And some forms you’d predict you’d see all the time you rarely see at all. For example, out of approximately eighty kids, how many times do they end up in the hospital in a seven-month period? Not just the ER but full admission. A few? Ten? Try thirty-two full admissions in a seven-month period. Those are documented instances of the ILLC doctor on call—Dr. Caviolini—referring a child for a hospital stay. About nine infections and eight pressure sores. Sixteen trips for what appear to be several CTs or MRIs and various other tests per kid. One girl died from MRSA, that superbug the hospitals are freaked about because it’s almost antibiotic resistant. That’s a lot—a lot of serious health problems. I haven’t been in an emergency room or admitted to a hospital in years. And I am really disabled. Really disabled. In theory, at least, they’re supposed to keep these kids healthy.

At about five thirty I go down the hall to the accessible bathroom that I share with the girls. None of the staff bathrooms have accessible stalls, of course. At ILLC, all crips are children, including me, apparently. Mrs. Phoebe even pats me on the head from time to time. I’ve tried to object, but it happens really fast, like a drive-by patting.

Most of the kids are in the cafeteria at the moment, so I have the bathroom more or less to myself. There’s a girl about ten years old who has just finished spraying her hair with what smells like bug repellent and is now leaving.

“Hi, Cleo, bye, Cleo,” I call to her.

“Bye, Jane,” she says. Most of them don’t know my name yet. But they’re getting closer.

Ricky drives me home about twice a week. He comes by my office at six o’clock. Sometimes we go to Mr. Beef and sit in the ILLC bus eating and talking. Tonight we’re on our way to a place called La Fonda in Pilsen.

I’m taking a few swallows of beer when he says, “Want to come to my nephew’s birthday party?”

It takes all my self-control to refrain from a spit-take. I’m unprepared for the family thing to rear its ugly head so soon. I’m 90 percent sure the invitation means no more or less than any of Ricky’s questions—his conversation is relatively free of subtext. In any case, there’s no way I’m going. Where there’s a birthday party, there is family, and you never know how someone’s family is going to react. To the disability.

“I’m sure it won’t be accessible,” I say. “People’s houses never are. You know.”

He says, “It’s at Chuck E. Cheese.”

I say, “You want me to go to Chuck E. Cheese?”

“Yeah, why not?” he says, with a mouth full of tortilla chips.

“You can’t even hear yourself scream in there. There’ll be five hundred preadolescents amped on high-fructose corn syrup. I’m not even exaggerating.”

“And?” he says.

“Thank you. I’m really glad to be invited,” I lie, “but it’s not a good idea. For me to go.”

He shrugs and says, “Okay.”

I was hoping he’d ask why it wasn’t a good idea, but being a person who relies heavily on subtext, I didn’t say so. The guacamole arrives to change the subject.

“I have a question,” I say. “How many of the kids at ILLC would you guess were admitted to St. Theresa’s during a seven-month period in 2011? I’m only up to mid-July.”

“Don’t know,” he says. “How many? Can you pass the green salsa?”

“Admitted. Not just the emergency room.”

“Ten percent?” he says.

“Well, I didn’t do a percent thing,” I say. “I just added up the number. Out of eighty-one kids. That’s how many kids we have now, not then. Then it was eighty. How many?”

“Hold up. I’m lost.”

“Thirty-two out of roughly eighty kids were admitted to St. Theresa’s in a seven-month period.”

“Really?” he says. He pours the salsa over the guacamole. “Sounds like a lot. You think that’s a lot?”

“Yes, I do,” I say. “That’s almost half the kids. In about half a year. That’s a lot, right?”

“They’re always sick. They’re always coughing or sneezing all over the place. ILLC is like one of those—what do you call ’em?”

“What? I don’t know.”

“No, where there’s viruses and flu—one of those—and they do tests and swab the germs on it. Come on, one of those—”

“Petri dishes?”

“Petri dishes. It’s like that. The place is crawling with bugs.”

“Okay, but they get referred to the hospital for tests. Specific tests for X-rays and scans and MRIs.”

“A lot of the kids have these shunts,” he says, drawing an imaginary picture on his head with his finger. “Shunts in their heads. Like if they have spina bifida or cerebral palsy they wind up with shunts a lot of times. It’s like they get fluid building up in their heads and the shunt drains the fluid off. To somewhere, and you can’t see the tube. It’s not obvious, it’s, you know, little, you’d have to look for it.” He gives up on the illustration. “They get sick all the time from those. All the time. They get headaches—migraines—and throw up and the nurse calls the EMTs. Or sometimes they get sick from bedsores and they run some high fevers from those, so that’s another reason. It sounds like a big number but for these kids it could be normal.”

The waitress comes with our dinners and says, “Can I get you anything else?” She says it to Ricky, but I figure it was meant for both of us, so I ask for more napkins.

“Why do they get all those bedsores?”

I say. “From not moving around as much, right?”

The waitress returns with a few napkins and presents them to Ricky. I have the power to become invisible in some restaurants. I just never know which restaurants. Or how to turn the power off.

I say, “But isn’t that something they’re supposed to do at a place like ILLC? Make sure they move around more? Help them change positions when they’re in bed? Take care of their skin?”

I don’t really know why I’m pushing this. The thing about shunts makes sense and a lot of crips get sores. Even non-nursing-home crips. But it’s a guaranteed side effect of nursing-home living. They might as well put it in the bylaws. I eat a bite of enchilada and drink a little more beer although I can already feel that my face is warm. This whole “nephew’s birthday” thing has put me off my feed.

“I bet ILLC uses the cheapest mattresses on the market,” I say. “It’s like they want them to get sick.”

“What,” he says, “you think there’s a conspiracy to make them get bedsores?”

“Why not? How else can you explain it?” I can hear myself and I sound angry. I look up at him to see if he’s getting angry too. He’s smiling at me. Oh. “I’m just—ignore me,” I say. “I’m delusional from looking at forms all day.”

“I remember this one time though,” he says, reaching over to brush some fuzz off my sweater. “The doctor—what’s his name?—Spaghetti, Rotini …”

“I am not guessing,” I say.

“Ravioli,” he says.

“Dr. Ravioli,” I say.

“Right,” he says. “You mean Dr. Caviolini?”

“Ravioli is easier to remember.”

“True,” I say.

“Yeah, so Dr. Ravioli sent one of the kids, Michael Jackson—”

“Yeah, I know Michael Jackson,” I say. “Not the ‘Billie Jean’ Michael Jackson—”

“Right, right, the spina bifida Michael Jackson.”

“Right.”

“So he was fine, right? Totally cool. Great little guy. Out of the blue, Ravioli sends him to the hospital for a week. I drove him over there. Michael’s like, ‘Why am I going to the hospital?’ ”

“Why was he?”

“I don’t know. When I pick him up the next week, I ask Michael is he feeling better. He says he wasn’t sick, he just had some X-rays.”

“What hospital?”

“St. Theresa.”

“What’s that place like?”

“It’s empty,” he says. “You walk around even a little and it...