With this issue, Lilith launches a project focusing on the experiences of Jewish women with disabilities. In over 36 years of cutting-edge publishing, Lilith has crafted a feminist lens for examining how gender and dis/ability intersect in the Jewish world. Now, with this new project, we intend to deepen and complicate
the coverage of this important subject.

Media reports tend to focus on the work and words of caretakers — for an autistic
child, a parent with Alzheimer’s, a spouse with chronic illness. These stories are important, but they do not give agency to the disabled person herself. Now, we need to accelerate change, shifting the frame to the women themselves, so that they can deliver the facts about their own experiences.

Susan Nussbaum’s witty, alarming, punchy and compulsively readable debut novel, Good Kings Bad Kings, has just been issued in paperback; it won the PEN/Bellwether Prize for Socially Engaged Fiction, created by Barbara Kingsolver. The book is set in a nursing home for young adults with disabilities, and they narrate their lives in their own voices, chapter by chapter. The reader also meets those who harm them, through venality (for-profit nursing home operators, for example) or through ignorance (underpaid and ill-trained attendants, for example). But even with their mobility challenges, these youngsters are able to mobilize themselves in order to drive changes in their own circumstances and to agitate for justice. Nussbaum, a wheelchair user since the 1970s after a car hit her on an icy Chicago street when she was 24, has witnessed — and agitated for — changes in the ways people with disabilities are treated, and she was selected by Utne Reader in 2008 as one of “50 Visionaries Who Are Changing Your World” for her work with girls with disabilities.

Nussbaum has plenty to say. Like, “Access, in the architectural sense, is already covered by the ADA and other laws. Talking about acccess is often a distraction from the broader impact of disability oppression.”

And: “The New York Times revealed what a shamefully bad job NYC did in evacuating people with disabilities during Sandy. And in Katrina, people in nursing homes in New Orleans were simply euthanized.”

Susan Nussbaum talked about her book and her background with Susan Weidman Schneider, in person in New York, by phone from Chicago, and finally by email. 

Susan Weidman Schneider: You’ve written, in an author’s note at the end of the book, about how urgent it is to have disabled people not be “othered” — my word, not yours — in order to render their reality accurately. You’ve observed sharply how disabled people in fiction are always either villains or victims, and that there’s never more than one in every work. I want to quote you directly:

I used to wonder where all the writers who have used disabled characters so liberally in their work were doing their research. When I became a wheelchair-user in the late seventies, all I knew about being disabled I learned from reading books and watching movies, and that scared the shit out of me. Tiny Tim was long-suffering and angelic and was cured in the end. Quasimodo was a monster who loved in vain and was killed in the end, but it was for the best. Lenny was a child who killed anything soft, and George had to shoot him. It was a mercy killing. Ahab was a bitter amputee and didn’t care how many died in his mad pursuit to avenge himself on a whale. Laura Wingfield had a limp, so no man would ever love her.

Susan Nussbaum: Disabled characters are shown as the only character with a disability — as if we totally live in a non-disabled world — the one lone character in a sea of others.

What do you think about Far from the Tree, the book by Andrew Solomon about parents raising children who are very much unlike themselves, typically because the child has a disability?

I haven’t read the newest Solomon book. I did read most of Noonday Demon [about depression], and really admired it.

The whole idea of exceptionality feels unnecessary to me, and plain wrong. Another in a long line of euphemisms that serve only to frame disability as abnormal. I don’t really mind that he groups disability in with LGBT, but children born of rape? Whatever.

I am not generally attracted to books that reflect on the responses of parents to disabled children, or children who are marginalized for whatever reasons they deviate from “normal.” It always seems to confer a kind of martyrdom on the parents, who themselves are viewed as loving their children “in spite of” the disability. I don’t doubt the great love and dedication of the parents. I’m sure it’s all a very compelling and beautifully rendered read, and probably does speak to many parents in a profound way. But I’m sooo tired of hearing from doctors or social workers or other “experts” about the disability experience. I’ve heard it all before and it has very little to do with my reality. I want to hear about disability from disabled people.

The disabled teen and young adult characters you’ve created in your novel describe their own circumstances, relationships, dreams, wants. None of this comes to the reader through the lens of the “abled.” Pointedly, in your notes at the end of the novel, you remind readers that “When African-American characters were written only by white writers, or LGBT characters were written mostly by heteros, and women were written largely by men, culture in America was, in a way, simply a reflection of the imaginings of a privileged segment of the population.”

Like when African-American writers started to accurately represent that experience, white writers had to look at how they had represented black characters in the past. The more disabled people enter the cultural milieu and write about the experience of being disabled — for real — that will change. And other writers will get these ideas….

What is an example of something that gets elided or denied —  or just not noticed — when non-disabled writers are creating the characters or writing the non-fiction pieces about people with disabilities?

I made sure to have sexually active people with disabilities, because everyone is sexual. People writing about disabilities are usually not disabled, so we are often written as non-sexual characters. This is perpetuated in so many ways by the dominant culture — certainly in books and movies that do a very poor job of representing the experience of real disabled people. So it was important for me to write about disabled characters who are fully sexual people . Because that’s the truth. 

Your characters seem confidently sexual. And in the book sexuality is loving, and real, between consenting partners. There’s also a sexual predator, an evil “caregiver” employed by the nursing home. But even aides and employees who have warm feelings for their “patients” can’t act on their better instincts because of overwork, and the greed and corruption of the nursing home owners.

In real life, occasionally we see news items about the progressive nursing home movement that talk about acknowledging and respecting the sexuality of the residents.

Let’s put that aside for now… “progressive” nursing home movement?

 OK. So tell us who has been reading your immensely compelling, funny, startling book?

The best is that the disabled community is embracing it. There’s a whole disabilities studies community in academia — and they are really taking it up, assigning it all over the place. This is very encouraging to me, waaaay beyond what I ever imagined, since the book world is very competitive. Winning the PEN/Bellwether prize made the difference between relative obscurity and getting out there. 

You’re Jewish, but there’s no overtly Jewish character in the novel. What about in your plays? 

They all have disabled characters. I exploited my own experiences. I am an atheist and I have a strong anti-religion point of view. But a very strong people point of view. I am very big at getting beyond what separates us to what unites us.

You know, I did write a one one-woman show, “Meshuganismo” — about Jewish women who fall in love with  Latin men. That had a very inherent Jewish sensibility to it. 

The voice of the teenaged girl Yessenia — wry, poignant, edgy and very self-aware — is the first one a reader hears when the book opens. She’s talking about the school she went to before she landed in “juvie.”

I went there on account of I am physically challenged, and they send the people which have challenges to Hoover. They send people 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…I am in tenth grade and I been in cripple this and cripple that my whole sweet, succulent Puerto Rican life.

When you spoke about the novel recently at Rodeph Sholom in New York City, you mentioned that you yourself have an adopted daughter who is disabled.

Yes, I adopted a daughter. I already knew her very well when I adopted her; she was a teenager. She, too, has a disability. The reason I was so interested in maintaining the relationship with her forever is that she is really quite extraordinary — very funny, very tough. It’s unusual to have that be an innate quality. Today she has a great job, she’s got a wonderful political consciousness. She’s married — happily — to a guy I like a lot. And that’s it. 

What was your own family like as you were growing up?

I came from a privileged background — middle class. My mother was a liberal Democrat. She died 10 years ago of Parkinson’s; it really strip-mined her personality. She was a pistol, who started out doing public relations and then did a lot of local political work for candidates, like McCarthy — Eugene McCarthy, that is.

My dad was an exterminator for years, and then became an actor. My mother had always worked and so she could fill in financially until he started to make money; he worked as an actor and still does.

What about the Jewish piece?

My parents were both atheists, but they still felt it was important to give us — my older brother, sister and me — a sense of cultural identification. Much of it was to please the grandparents, who never seemed particularly religious either, but I think felt that being a Jew was crucial to their experience, and their place in history. We celebrated Passover and Rosh Hashanah for a number of years. We also did a Hannukah thing — kind of a one-night stand as opposed to eight nights — but that was because it was an opportune way to remind us why we weren’t getting a cool tree and a million presents.

Religion has always felt unnecessary to me. It never worked for me, even in a metaphorical sense.

 It’s hard to describe to what extent my Jewish heritage informs my identity. I have a Jewish sensibility, whatever that is. I try to be responsible, to question and struggle with my own biases, to contribute to humanity — not Jewish humanity but all people. I deeply long for an integrated life — to live and work with people of all races and ethnic backgrounds. I’m not looking for ways to set myself apart. We live in such a fractured, frightened, segregated world. I hope for something better.

The Vietnam War was very politicizing. I have an older brother and sister who were both involved in the anti-war movement and the women’s movement. I followed suit. I was always a political person, you know? At an early age I seemed to have a perspective on power — who had it and who didn’t.

You do understand the workings of power, and you describe yourself an activist for disability rights since a little while after your accident. In your book you portray — in riveting, page-turning scenes — how a for-profit nursing-home business actually measures all they do against their bottom line, and not against the good they could do for the people they’re serving.

When I became disabled, there was no disabilities rights movement in Chicago. When a place doing disability rights work opened soon after, I joined. It was a transformative experience. The other employees were all disabled in one way or another and they understood every experience I’d had as a disabled person — no accessible bathrooms, no curb cuts in the sidewalks, no accessible public transportation. We would laugh about the kinds of things…the reactions we had from people. We were some of the first disabled people who took to the streets in 1979 and 1980.

You were an actress before the accident. Then you became a playwright. Were you bitten by the theater bug because of your father?

Yes, it seems so. I loved the idea of pretending to be someone else.

But you’ve said you were angry at the theater.

I was pissed because no one would produce my latest play. It just broke my spirit temporarily. It was a play about girls with disabilities who went to a segregated, all-disabled school. I just knew their voices very well. I worked with girls for a long time — that’s how I met my daughter. I really loved that work, loved these people. Many of them I keep in touch with on my Facebook page. The play was kind of a wonderful piece — and it did not get picked up.

Sounds a little like “A Chorus Line”?

I wish it was like Chorus Line! My play takes place during one long day, the day they graduated from high school. They are all really good friends, with one alpha female. You see the conflicts with the girls, then you see them at home. One of the girl’s mothers is in prison. All sorts of things. Like the novel, at the end you see that there’s a future for some of these girls. And for others, whom you’ve fallen in love with, you worry that maybe there is none. No matter what they do they may not survive in this world.