Real Hell Holes: Debut Novelist Susan Nussbaum on Discrimination of the Disabled

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By Kelly RoarkNussbaum_author_LR1

Susan Nussbaum’s debut novel is eye-opening, devastating and laugh-out-loud funny. A group of young disabled people in a fictional Chicago institution tackle demons past and present. While Nussbaum exposes some of the very real horrors of the institutionalization of disabled persons, “Good Kings Bad Kings” is far from heavy-handed. Richly imagined diverse characters face the issue of institutionalization, and make changes in both small and dramatic ways to take control of their own futures. The winner of this year’s PEN/Bellwether Prize for socially engaged fiction joins us for a conversation about the types of institutions disabled persons often live in, her fantastic characters, and her reclamation of the word “crip.”

Are there a lot of institutions like the one in the book?
Yes, I don’t know the number in Illinois, but there are many thousands in the country. There may be more than a thousand in the state. There are nursing homes—they’re legion—everywhere, and then there are other facilities for people with mental disabilities, kids with various developmental disabilities. There are places where, if parents think they can’t manage or someone else can do better, there are certain pressures on families to institutionalize a disabled child. And there are certainly no financial breathers from how much it costs to have a disabled child. The government makes it very hard for a disabled person to survive in a way that is manageable, financially, because the institutions have big lobbies. Culturally, we’re also a people who feel it’s good to segregate people who make us uncomfortable. It’s a long tradition, going back way over a hundred years. Doctors really pushed to get these families to put their kids into facilities. Real hell holes.

Do you think there’s a lot of financial abuse like in the book, such as funneling money from Medicaid?
So much of the book is based on research, articles and journal studies, in which the results are so harrowing, it almost hurts to read them. It’s just crazy that this stuff is going on. I felt that even using real stories about the kinds of abuses that had happened to people would be more than anyone would believe. So I didn’t; I held back, believe it or not. There are some places that are better, but personally I believe that the concept of institutionalization is medieval, and something that a truly civilized society would have done away with entirely. Even people with very significant disabilities—there are alternatives.

It drives me crazy when some white author writes in the voice of a minority character, but you do it so beautifully. How did you do that?
I have a lot of people of color who are my friends and I worked for many years with girls with disabilities. And I have a daughter who is Puerto Rican, so I was able to get lots of specifics. I have a good ear. I’m not good with metaphors—I’m not one of those literature writers. I was a playwright before. Didn’t have too much success with it; it’s so hard to write something and get someone to pick it up. it’s just such a grind. So, I don’t know why I thought this would be any easier.

So, writing a book was not easier than writing a play?
Oh, it’s so much harder! But, I’ll tell you what happened with this book—I sent it in to this Kingsolver prize thing that was happening, luckily the year that I had a draft that was readable, and many months later, I got a call from Barbara Kingsolver. So that made everything fall into place. I got a publisher through her. She is very committed to supporting new writers who are doing work that is in some way social-justice-oriented.

Were you surprised to win?
I thought it would be terribly competitive, but I thought I had a chance because you don’t see books with multiple disabled characters written by disabled writers who understand to a greater extent the whole experience. Not to say that there aren’t some pretty amazing books by non-disabled writers that have a disabled character, but there are many more that use the character to symbolize something—something not very good—disabled villains or disabled saintly-like characters. They’re solely to help the protagonist evolve as a better person.

Did you meet Kingsolver?
Oh yes. She was lovely. She’s certainly in my pantheon of writing gods and goddesses.

Your book reminded me a bit of “Push,” by Sapphire. Is she an influence?
Yes. In fact I sent the book to my playwriting agent—he liked it very much and had an idea to send it to an agent in New York, who has a wide range of clients, one of whom is Sapphire, and she turned out to represent me. I asked her to send a galley copy to Sapphire, but I don’t know if she ever got it.

Yessie is a really tough girl—in the beginning she’s punching someone in the face…
Yes, I had to really cut that back. I had her really beating the crap out of the kid. But, she was an angry person.

Joanne is a catalyst for change in the book. I wonder if her activism is similar to your activism with the younger girls?
My activism has always been much more out there. I would never work in a place like that. I drew on my own experience, of course. In order not to make the book real preachy, I had to pull her back a lot. How sophisticated her ideas were, or else it would just be intolerable to read. She is the one that exposes people to more things than the other characters.

Could you talk about the character of Michelle?
Well, I found out that there were such things as patient recruiters for nursing homes, like they need help. They’re just so hungry for more patients. It seemed like such a mercenary kind of job. More than any other characters, she can become slightly caricatured at times, but I heard her voice. I did want her to be a young woman, naive, who really had a desire to get ahead, and to be good at her job, and make some money. So, here was this opportunity where they were going to help her get ahead, and they took her seriously, at least that was how she felt. And she did her job very well, for a long time, until things got difficult.

In a way, she has the most potential for change, within herself, but she doesn’t really have a complete turn-around—you don’t satisfy us.Nussbaum_GoodKings_jkt___rgb_LR

Well, I think she does say something like the success track is not all it’s cracked up to be. You don’t really see what happens to any of them. Will this fragile girl, Mia, what will she do, will she ever get it together? Will that relationship between Joanne and Ricky last? But, the clearest thing, though, is Jimmie and Yessenia.

What inspired the character Jimmie?
I have a friend who is a lesbian, a particularly dear friend, and I hear her voice really clearly, so I was able to channel her. I can’t imitate people, but I can hear them in my head if I work on it. I had the greatest editor, but, even if a person says, “You know, you know, you know you know you know” they don’t really think that’s good. I think that’s fine. But, I had to cut out a lot of stuff. I had to cut out the whole beginning because they said anyone who saw that kind of violence and profanity on the first page would instantly put the book back on the shelf.

You managed to take this pretty devastating story, and inspiring story, and make it so funny. I was describing it to a friend and they were like, “Oh, that sounds so heavy” but I said, “No no no, it’s actually really funny.”
To me, the bleakest stuff is always the funniest. If you put people who happen to be funny, whether they know it or not, in situations, no matter how grim the situation they’re going to be who they are. Some of these writers who come out of India, for example, have the grimmest scenarios, but what happens is so hilarious. I love that stuff.

Did you have in mind a particular time this story took place?
It happens now, although you see fewer all-kids-with-disabilities schools. More and more are being shut down because of the law. But you do see the kind of pattern. The kids are split up and sent to other high schools. They’re segregated, but within that high school. So, there will be a few classrooms with all the disabled kids and they stay there all day, instead of going to different classes. They get educated in that segregated setting.

It seemed like most of the characters in the book were extremely poorly educated. Is that because of this segregation?
It’s part of the discrimination that disabled people experience, especially disabled people of color. Or people that are not economically set—they’re not in a place where they can get an education in a regular situation. Most of these kids are not challenged, because there are no expectations for them to succeed or get a job. That’s crazy.

So, regardless of their mental capacities, if a kid has a physical disability they’re more likely to be grouped with other people with disabilities, mental, physiological…?
Schools with programs for kids with disabilities are not adequately funded or taught or resourced and people justify that by saying, “Well, you know, what are they going to do anyway? They’re always going to need help.” As if that’s this horrible thing, and no one else needs help in life. I think a lot of it is just economics. You go to a better neighborhood in Chicago and the school is better. You go to a poorer neighborhood and the school is in deep trouble.

Did you make a specific choice to have the story take place in Chicago?
Yeah. I live here. I came from a relatively privileged background, just your basic middle-class stuff. Because of that, I had some unrealistic thoughts about what kind of career I would have.

Could you talk about the line, “I can be a good king or I can be a bad king”?
It came from a news article that I read, I think from the New York Times, where they did a series exposing nursing home abuse. God, I read this harrowing article… there was a kid who died. When a kid is unruly, they take a kid face-down to the ground, one person takes the ankles and the other takes the arms until they calm down. Often they will sit down on the child’s back. I think that’s legal. Many many many times, what’s happened as a result is that a kid had died. They have a heavy adult sitting on them, and if they struggle, the adult thinks, rightly or wrongly, that the kid is fighting back, and they bear down. So, there was a kid being driven somewhere in a van, and the kid did something, I guess, jumped out of the seat, so the guy put him down on the floor of the van and sat on him. And the testimony of the driver is that the guy who was sitting on the little boy said, “I can be a good king or I can be a bad king.” And I found that so chilling.

Do you mind talking about your choice to use the word “crip”?
That’s the word I use. Not always, a lot of time, with people who are non-disabled, it makes them uncomfortable. In general, only with disabled people do I use that word. There are many disabled people who don’t like that word. The first generation of activists, people like me who are getting older, we used the word, sort of reappropriated the word of all of its negativity. Remade it in our own language with each other. We were trying to find some vocabulary that suited us. “Handicapped” sure didn’t, and that was the word of choice when I became disabled.

There’s a moment in the book where Joanne says the word “crip” to some of the younger people, and they’re shocked for a moment.
Yeah, the youth are very….[they prefer] “challenged” or something like that. They think it’s really negative. But, that’s okay, that’s good. They need to start using whatever vernacular they can come up with that suits who we are.

If people are inspired by your book to get involved in disability rights, what would you suggest they do?
Almost everywhere in the country there are disability rights organizations. The main national movement that disabled people are taking up right now is the de-institutionalization. I used to work at a disability rights organization on Chicago Avenue called Access Living. They have a rather well-staffed, but not enough, group of people working on that issue. Going into institutions, engaging the people who want to get out, working with them on learning the skills they need. Some of these people have been living in these places for so many years, they don’t know, anymore, how to take care of themselves. How to not be held to these very rigid, regimented rules and schedules and all of that shit. They don’t know how to go shopping or how to handle a budget—they may not have learned. Also the organization gets a certain number of apartments that are available for newly disabled people to move into. There is some give on this statewide; they’re like, “Oh, you mean it’s cheaper to support someone in the community than in an institution?” They’re so deeply in debt that they’re beginning to take it seriously. There’s also a terrific place—their mission is to protect the rights of children. They’re called Equip for Equality.

“Good Kings Bad Kings”
By Susan Nussbaum
Algonquin, 336 pages, $23.95

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