Nussbaum in her Lakeview apartment
Nussbaum in her Lakeview apartment Credit: John Sturdy

Imagine the person you’d like to be. No—imagine the person you could be, if you let yourself. They’re different. The first might be a role model, the second a more emotionally fraught character, whose torments and jealousies aren’t checked by social stricture. In the last play that Susan Nussbaum got produced, she wrote for both. No One as Nasty, which premiered in 2000 at Victory Gardens Theater, is about the

relationship between a woman named Janet, who, like Nussbaum, is disabled, and Lois, an assistant she’s hired to help her with everyday activities, like showering and dressing. Nussbaum split Janet into two personas, played by different actresses. They’re a sort of ego and id: where Janet is solicitous and fretful—a normal person, if such a thing can be said to exist—Janet 2 can be more vulgar, more expressive. In the opening scene, Lois is late for her shift:

JANET 2 (Pacing in wheelchair): Goddamn her to the pits of everlasting hell. Fuck her to death. (Dials again; talking into a machine) Lois, it’s one o’clock in the morning. Are you there? Lois? You were supposed to be here an hour and a half ago, Lois, and I mean, this is really unfair. I really, I am exhausted and you—

JANET (Telling Janet 2 what to say): It’s not like I don’t pay her enough—

JANET 2: Do I not pay you enough, is that it? Is it? Are the demands of the job so—so— Am I an animal? Am I a member of some subspecies, Lois?

JANET: Good.

JANET 2: This is just deeply fucked up on your part. This is just manipulative bullshit, Lois. Good-bye.

Janet is white and relatively well-off; Lois is African-American, and her job as a personal aide indicates her economic situation. This political thicket—a disabled white woman, a black de facto servant—is an ambitious gambit; in lesser hands it could be an awful mess. A lot of it falls to voice, and the ability to translate it to the page. Nussbaum, who’s generally reluctant to admit such things, knows her ear is a strength. “I can hear some voices,” she allows.

I asked Carrie Sandahl, a friend of Nussbaum’s and a scholar of theater and disability who teaches No One as Nasty in her classes, what she made of the play’s chief innovation—the two Janets. She said she thought the device allowed Nussbaum to sidestep a bad trope of writing about disability, where a disabled character’s perspective is mediated through her relationship with some nondisabled other—a friend, maybe, or a spouse or a sympathetic caregiver—who acts as translator for nondisabled audiences. Think of Scent of a Woman, or Rain Man. It’s a loophole that rests on the assumption that audiences won’t be interested in, or will not hear from, a disabled character speaking about her own experience.

Nussbaum subverted the loophole, threw the trope aside. In her notes on how the play should be produced, she described Janet 2 as “the self Janet has invented to help tell her story—to make it ‘accessible,’ in a way.” By letting Janet talk to Janet—to translate her own thoughts, feelings, and frustrations—Nussbaum could address the audience directly, as a disabled person. There was no filter.

Nussbaum started writing plays in the early 80s, after becoming disabled at age 24, but she gave it up a decade ago out of frustration: she couldn’t get produced the last play she wrote, which she thought was her best. Her work as a playwright and an activist dovetails with the beginning of the modern-day disability rights movement, which, in Chicago at least, Nussbaum helped to define. With a new novel, she might continue to advance the conversation about disability, and in a new format, simply by it being about disabled characters—still a rarity in popular culture. And also by being very good.

Good Kings Bad Kings is a story about a group of disabled kids in a bleak situation at a Chicago institution, and a few adults allied with them. As with other of Nussbaum’s work, it’s remarkably funny—a humanist feat. The characters are lively, ingenious, and, importantly, interesting—spiritually intact as people, not just sketches of this or that disability.

After a period of relative silence, this is in some sense Nussbaum’s moment. A few weeks ago she was honored for her career so far at Bodies of Work, a festival of art and performance by disabled people. Shortly before the festival’s start, Sandahl, its organizer, was still unsure what to call whatever award she’d be giving Nussbaum. A research assistant proposed just calling the thing the Susan Nussbaum Award. “I told Susan I wanted to crown her Disability Culture Queen,” Sandahl said. “And I said I was going to give her a tiara. She didn’t go for that. But if there was a queen to be crowned, she would be it.”

As she prepares to promote the novel, released by Algonquin Books on May 28, Nussbaum knows she’s already avoided the first major hurdle that other debutante authors face—the initial sell. She got a publishing deal for Good Kings Bad Kings after submitting the manuscript for consideration for the PEN/Bellwether Prize for Socially Engaged Fiction; the book was selected by Barbara Kingsolver, whose blurbs are on its cover (“This is fiction at its best . . . “).

Nussbaum’s first novel is told by a cast of characters who live in or are otherwise associated with an institution for disabled young people.

In her writing and in conversation, Nussbaum conveys a sort of equanimity tempered by pessimism, to pretty humorous effect. At the Bodies of Work Festival, she noted how far the movement had come in the last 30 years before imagining—no, hoping—what disability activists in another 30 years might say about 2013: “Do you remember how horrible that was?”

About the book’s release, she says, “I know something is gonna happen, and I’m excited. And yet anticipating it is so much more fun than experiencing it. Because you never know what’s gonna happen”—an observation that recalls a line from her 1992 one-woman show Mishuganismo. Except back then she was talking about love, and the outlook was even darker: “I’ve already envisioned the inevitable desolation and black void existence I will lead after Miguel breaks my heart,” she tells the audience. “That is, if we ever do get together. Imagining how miserable you’re gonna be before you even get to the part where you’re actually happy.”

A couple of pleasant contradictions are at work here. Nussbaum is deadly serious in her politics but her delivery is hilarious. And she combines big ambition with a fairly low personal regard for her own talents, which are estimable. “I’m not good with metaphors,” she told me, by way of example. “I don’t write beautifully. You know, I’m interested in certain stuff and I’m anxious to share that stuff with other people, and so I’m able to do what I do.” A pause. “Whatever that is.”

And yet her ambition was—maybe it still is—to be, as she once put it, the Tony Kushner or the August Wilson of the disability rights movement. She wrote that in a foreword accompanying No One as Nasty when it was anthologized in Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights, but not before mentioning that she wasn’t very happy with how the play turned out: “I tried to fix it in numerous rewrites, but the play resisted being about the thing that I wanted it to be about. I wasn’t a good enough writer. When it was finally produced . . . I resigned myself to accepting the piece for its strengths, and hoping to do better next time.”

She goes on, “I suppose that someday, maybe soon, a disabled playwright or two will come along and break through, be the voice of our fledgling minority,” like Wilson or Kushner, she mentions. “I just hope I’m not around when it happens, because I’ll wish it were me.”

Nussbaum wrote one more play after No One as Nasty. It was called Crippled Sisters, and she thought it was a breakthrough: “I’ve written a bunch of plays, and this one play, I thought, really achieved what I wanted to—finally.”

I ask: What was that?

“There’s never anything to lose, because you don’t plan on anything good coming out of it, you know?”Susan Nussbaum on writing

“It was good,” she says, lightly. “And I knew it was good. I knew the other ones never really happened in that way, but they got produced nonetheless. This one didn’t.” The play had a couple of readings, in Chicago and in New York, but that was it. The script was based in part on Nussbaum’s experience working for the nonprofit Access Living, where she most recently organized young women with disabilities into a group called the Empowered FeFes. (She was cited for that work in 2008 by the Utne Reader, on a list of “50 Visionaries Who Are Changing Your World.”) At Access Living, Nussbaum said, she’d get e-mail upon e-mail about the conditions at homes for disabled people. A focus of the organization’s work, and a broad goal of the disability rights movement, is deinstitutionalization—an end to the segregation of disabled people, essentially, into institutions that aren’t responsive to their needs. The principle is that what’s bad for disabled people isn’t their disability; it’s the society that refuses to accommodate them.

Nussbaum’s play was about disabled girls in a Chicago high school on graduation day—interacting with one another and sometimes breaking away to address the audience directly. Nussbaum said there wasn’t enough interest in the subject matter; Sandahl added, in a separate conversation, that staging it would’ve been a challenge, too. There simply aren’t that many professional disabled actors out there, for reasons you might imagine: apathy on the part of professional arts organizations results in barriers both long-term (the training and development of actors with disabilities) and immediate (inaccessible backstage spaces, for instance).

Training barriers translate into casting barriers. Sandahl and Victoria Lewis, who anthologized No One as Nasty in the volume Beyond Victims and Villains, staged a reading from the play in New York, where they worked with the Non-Traditional Casting Project to find a professional actor with a disability to read for the role. They couldn’t—”Not a single person in the whole city,” Sandahl said. She and Lewis settled on a young actress who wasn’t disabled but who fit the role in other ways. But, Sandahl says, “she could not read the monologue without falling into what her perception of what disability was, kind of turning it tragic. I worked with her and worked with her and said, ‘This is actually a funny monologue. This is actually comedy.’ There was almost no way I could communicate the situation of this girl and why her situation was funny and tragic at the same time.”

Working with Nussbaum on a play he’d written, Mike Ervin experienced a sort of inverse of that problem that also illustrates the challenges of representing disability onstage. Ervin is a longtime activist, a friend of Nussbaum’s, a playwright, and the author of the blog Smart Ass Cripple—which, if you’re looking for bona fides, was relentlessly promoted by Roger Ebert after he started exploring illness and disability in his writing and on Twitter. Ervin recruited Nussbaum to direct his play The History of Bowling, which premiered in 1999. “The reason I wanted her for History of Bowling was that a director with her perspective, not just in terms of humor or artistically, but also with a disability perspective, was really essential to that piece working or not working,” Ervin said. For example: “We were auditioning for the lead role of Chuck and several people came in and none of them had disabilities. It just wasn’t quite right. There was something missing.” Nussbaum found an actor named Robert Ness, who at that point hadn’t worked in a while. Ness, like the main character, was disabled; he “wasn’t the most polished of the bunch and he wasn’t the most accomplished of the bunch,” Ervin said, but Nussbaum cast him anyway.

It was a success. “The thing with Chuck was very sarcastic and sharp and some people might play him as bitter,” said Ervin. “But it was more of a liberating sarcasm, kind of a coming-out-of-the-closet type of sarcasm. And I think Bob understood it that way and played it that way, whereas in other places where I saw it played, sometimes it was played by a guy in a chair and sometimes not. There was at least one case where the guy played him really bitter, and it wasn’t nearly as funny as I intended it to be.”

Ervin and Nussbaum share a kind of humor that Carrie Sandahl says characterizes a lot of the output from, and conversation between, disabled artists. “That humor is what drew me to her,” says Sandahl, who first knew Nussbaum by reputation, then as a friend. “It’s a sense of humor that a lot of disabled people share. It’s really wry, it’s kind of dark, it’s kind of mean. It’s also one that, I think, has emerged as a way of critiquing a society that has put you in a certain kind of box. Sometimes, when things are so violent and oppressive, being able to bring something down through humor is a survival strategy.”

Nussbaum grew up in Highland Park, and was interested in acting early on. Her father, Mike Nussbaum, made his first career as an exterminator; he’s now a lion of the Chicago theater, having directed and acted here (and in Hollywood) for decades. After she moved into Chicago, as an adult, Nussbaum began taking acting classes at Roosevelt. “You know, it’s a stupid thing to do,” she says. “Because you can’t. Ninety-nine-point-nine-nine-nine percent of people who plan on that are crazy, essentially. And I was, I think, in that percentage.” Anyway, she didn’t learn much about acting at acting class, but she did learn about plays.

She also took classes at what was then the Goodman School of Drama, run out of the Art Institute. (It’s now the Theatre School at DePaul University.) One day, in the late 70s, when she was 24, Nussbaum was on the way to class when she was hit by a car; she lost the use of her legs and partial use of her arms. As someone who’s allergic to the tragic themes that often surround disability, she’s not eager to talk about the accident. After she got out of the hospital she went to live in her parents’ apartment. It was hard, she says—not only the adjustment to a new physical condition but the fact that, in those days, “none of us really knew how to be disabled.” It must’ve been an isolating experience, I offer. “Yeah, it was terrifying,” she says. “That’s what it was—really scary.”

A friend of her father’s had offered Nussbaum a job as a production assistant at his radio theater company soon after she got out of the hospital. She worked there for about a year and a half, then learned about a new disability rights organization, Access Living, being founded in Chicago. “I felt that I belonged there,” she says. She offered to do PR for the organization; there she met Mike Ervin, who also did various jobs for Access Living over the years.

Involved with a burgeoning movement, Nussbaum started to realize the political and artistic potential of disability. “There wasn’t a real sense of cultural awareness, or voice,” she says. “But there was this very subversive humor that happened when disabled people were together that sort of gave me back my—whatever I had lost when I was injured. My pleasure in life. It really gave me that sense of pleasure back, and enjoyment and identity of my own. Or at least recaptured who I had been, and redefined what my disability meant for me.”

In the early 80s, she wrote her first play, Staring Back, a collection of skits about disability that was first hosted by the Schwab Rehabilitation Hospital, and then picked up by Second City E.T.C. in 1983. It was well regarded, though Nussbaum doesn’t think there’s a copy of the script that exists anywhere today. She does think that it had “some influence on the beginning of disability culture”—then beginning to cohere into a culture, with its own styles and forms and jokes.

“Having become disabled while she was getting her degree,” Sandahl says, “she brings a different perspective, because she was already down the path of becoming an artist, which is different from people who are disabled, like me, from birth, or who acquired disabilities at a young age, because we’re funneled out of participating in the arts. She’d had experience and access to the theater. And so when she had her accident—had this new body—she was still able to find ways to get in.” Mike Ervin says that it’s partly due to Nussbaum’s work that Chicago is now a “mecca” for disability culture and activism.

“It’s something that literature, as far as I know, has come nowhere close to touching, let alone exploring as far as she does.” Mike Ervin, a writer and a friend of Nussbaum’s, on the institution described in Good Kings Bad Kings

Ervin also credits Nussbaum with getting him involved in the theater. When they were officemates, she suggested that they write a play together. The Plucky and Spunky Show, like Staring Back, was composed of bits that examined disability and representations of disability through dark, incisive humor; it premiered at Remains Theatre in 1990. Nussbaum says she doesn’t remember much of her earlier work, and professes to “cringe” when she sees it. Sandahl has a copy of The Plucky and Spunky Show but says that Nussbaum “would kill me if I shared it with anybody.” Ervin recalls some of the skits: One about a “Dr. Picasso,” a plastic surgeon who’s sued by a patient for making her look “cubistic.” One called “Quasimodo’s Corner”—”kind of a running joke how there’s not a whole lot of role models in the media for disabled folks,” Ervin says. “So there was a talk show where Quasimodo was the host and the guests were George Wallace and Larry Flynt.” And there was a skit about “Quadriplegis and the Gladiators,” which arose from Nussbaum’s observation that the names for a lot of disabilities sound like they could be Roman gladiators. In it, disabled people, swords strapped to their heads, fight each other for the entertainment of the emperor, Jerry Lewicus. Jerry Lewis and his telethon, which has drawn endless ire from disabled activists, were the targets of a later play that Nussbaum cowrote, Telethon, as well a documentary by Ervin, an erstwhile “Jerry’s Kid.”

Meanwhile, Nussbaum cast her net wide in terms of activism. She was involved not just in struggles on behalf of disabled people—with issues like better access to public transportation—but, this being the 80s, solidarity efforts related to liberation movements in Latin America. The first big trip she took out of the country after becoming disabled was to Nicaragua, where her hosts were a group called the Organization of Disabled Revolutionaries.

She also went to Cuba with the Venceremos Brigade, a socialist organization that challenges U.S. policy toward the country. On a bookshelf in one corner of her apartment is a small photograph of Nussbaum with Fidel Castro. I ask her to tell me about it. “We were at the Habana Libre hotel,” she recalls, laughing. For a couple days she’d been in the hospital, having come down with “some kind of respiratory thing” and experiencing the famous Cuban medical system firsthand.

Meanwhile, somebody in her delegation had sent a letter to Castro via a member of the Cuban Central Committee. “I came back from the hospital and it was about 10 or 10:30 PM,” Nussbaum says, “and I piled up some pillows in my room, and put my head down and just tried to get some sleep. And there was a knock at the door and someone said, ‘It’s happening,’ and I knew instantly what they meant. And we all went up to the top floor, which was not being used. Everything, I guess, was being shut down because Fidel was coming.” They talked for hours—about the transportation system in the U.S., Nussbaum remembers, about the Bible. “Oh my god,” I say, looking at the picture of the two of them. “I know,” she says.

She recounted the experience in her 1992 show Mishuganismo, in which she wrote about Castro maybe the saddest, truest description I’ve read: “There was a time when Fidel stood for self-determination. For liberation. Well, that was a long time ago. For me, he will always be fantasy and history crashing into each other.”

Mishuganismo was directed by Nussbaum’s father, Mike, who’d read some things she’d written over the years, like letters to her brother, and urged her to organize them into a script. The play takes its name from Nussbaum’s coinage, which she defines in the opening lines: “I gotta bad case of mishuganismo. That’s when a Jewish woman goes crazy for a latin guy. Or when a Jewish man loses it for a latina. Or when a latin gets weak for a Jew. Hetero, homo, whatever. Anyway, I’m suffering. The other day I started planning the menu for my wedding. Tacos stuffed with chopped liver. And maybe a Babs Streisand pinata filled with little butterscotch Che Guevaras.”

The play goes on in a riot of different directions, though first Nussbaum pauses to problematize her condition, with nods to U.S. policy in Latin America: “Is this a kind of complex racism on my part? Is my mishuganismo related to the sick legacy of southern plantation owners who got off by paying regular nocturnal visits to the slave quarters?” She recalls a protest at a senator’s office where she locks the wheels of her wheelchair and then starts to have second thoughts (“Some people get a real jolt from danger, they get a charge, whereas I just get nauseous”), she talks about a protest in Atlanta, she relates her trip to Cuba. In one of the play’s more intimate moments she talks about the aggravating everyday challenges of being disabled, like birth control. She’s considering using a sponge, but isn’t sure—apres the sex act—how she’ll remove it without her personal assistant: “Most people can at least get laid without having to ask bystanders to yank out their birth control.”

Nussbaum at rehearsal for her first play, Staring Back, which was picked up by Second City E.T.C. in 1983.

“I think my heart was broken,” Nussbaum wrote last year about failing to get Crippled Sisters produced. She says she quit writing for seven or eight years. “Keep the day job, for sure,” she told me—though she didn’t. Nussbaum eventually quit working at Access Living to finish Good Kings Bad Kings, after trying to write it in her spare time. And the writing, once she made the choice, wasn’t hard to get back into: “There’s never anything to lose, because you don’t plan on anything good coming out of it, you know?”

The themes of the two works are similar: where Crippled Sisters is about disabled girls in a Chicago high school, Good Kings is about young people trapped in the fictional Illinois Learning and Life Skills Center, or ILLC, pronounced “ill-see.” Ervin says he went to a school similar to what Nussbaum depicts, and that he and others told her what it was like when she was writing the book. “It’s something that literature, as far as I know, has come nowhere close to touching, let alone exploring as far as she does.”

Good Kings Bad Kings is told, chapter by chapter, by a rotating cast of characters. The most prominent is Yessenia, who’s sent to ILLC after getting in a fight in her high school. “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,” she says. Nussbaum, with her playwright’s ear for dialogue, is fantastic with it; her characters, Yessenia especially, commit hilarious malapropisms that are perfect for their situation: Yessenia talks about “administrating segregation,” for instance, and “aggravating assault.” We also hear from charismatic and well-dressed Teddy; his girlfriend, Mia, the victim of sexual assault by an ILLC staffer; a managed-care representative beginning to doubt the beneficence of her employer; and three ILLC staffers, Ricky, Jimmie, and Joanne, the latter of whom bears a bit of a resemblance to Nussbaum. She’s sort of a smart-ass.

The book reaches its climax when the kids and a few sympathetic adults begin to protest their confinement and their neglect. Yessenia narrates the scene, which she instigated, outside the institution:

And Bernard wheels over right next to me and puts on his brakes. Fantasia can’t stand for Bernard to do nothing without her, so she wheeled over by him and stayed put. Bernard got Fantasia dickmatized. Then Mia says, “Yessie, what it say? The sign?” Not on account that she can’t read but because Mia’s blind as a bat.

So I read it off for Mia and she asks Bernard to push her over to sit next to me. She took up my hand and held it real tight.

A guy in a car stopped and asked were we selling lemonade. Can you believe that shit? They see a group of teenage people standing together anywhere else, they’d be arrested for being gangbangers. They see a bunch of disable people and think we’re selling lemonade. Where is the respect?

When I visited Nussbaum in her apartment, on the 18th floor of a building near Belmont with a nice view of the lake, she held her new book in her lap for most of the conversation. She’d been opening the mail when I showed up; the first hardcover copy of Good Kings Bad Kings had just arrived. Twice she smelled it—approvingly. She admired the cover, commenting, a little fretfully, on the reviews her publisher had chosen as blurbs for the jacket. “Did you find my book didactic?” she asked me. No, I said. “OK,” she said. “I agree with you!” But she was concerned that a couple prepublication reviews had noted that she was an activist, and worried the book would be seen as too agenda-driven.

Which is a concern when you’re writing about the type of characters often seen in the media as benign, uncontroversial, inspirational. “There’s even a Chicken Soup for the ‘special-needs child,'” Sandahl says, by way of contrast, when discussing the importance of Good Kings Bad Kings. As the movement has advanced, artists have become less shy about the sort of personal work they’re putting out, whereas the first wave, she says, was just about making basic claims. “It can feel kind of dangerous. Because people already think of disabled people as vulnerable—if you don’t play the line just right, you’re just going to reinforce people’s ideas that we’re pathetic and sad. And the kids in the book are in pathetic and sad situations, but they’re not pathetic and sad as human beings. That’s hard to get.”

Nussbaum remembers some press she did earlier in her career, and the kinds of questions she fielded: “Like, ‘How do you go to the bathroom?’ Can you believe that? I remember one woman asking me—and this was when I was at Remains Theatre, I was either onstage or I had written something—and her first question to me was, ‘When were you able to laugh again?’ That’s what she saw, was a human-interest . . . a really sad story. It’s like being blindsided, to finally hear how someone looks at you. And all this time you were going around thinking you were a regular person.”

Good Kings Bad Kings is dedicated to Nussbaum’s daughter, who comes up in the conversation when Nussbaum talks about the accident that rendered her disabled—like any such thing, a random turn of fate. “Shit happens, man,” she says, thoughtfully—and if you can imagine somebody saying “Shit happens” thoughtfully, you might have a grasp on Nussbaum’s style. “I just—I feel very lucky. Because I’ve had a lot of luck. And a little really bad luck.

“But you know how people think about stuff, like: well, this wouldn’t have happened if that hadn’t have happened. I would certainly trade in my disability for a standard-issue body that worked. Any day. Because it’s a real inconvenience, to say the least. But I met my daughter through my disability. I adopted a daughter because of this stuff.”

I hadn’t known she had a daughter. “Just hilarious” is how Nussbaum describes her. It must run in the family; in the acknowledgements Nussbaum credits her daughter, Taina Rodriguez de Velarde, with “letting me call you at work every day to pick your brain for Spanish words, particularly insults and curses.” Rodriguez de Velarde is grown—I can’t say how old; not very, though Nussbaum feels forbidden to publicize it—and she was one of the first girls that Nussbaum organized into the Empowered FeFes, her group for girls with disabilities. “We decided to be mother and daughter,” Nussbaum says. “We just didn’t feel like ‘friend’ adequately described our relationship.”

Looking at the book’s dedication page has reminded Nussbaum that she’s meeting her daughter for lunch the next day. She hasn’t read the book, and she doesn’t know about the dedication. “She’s gonna plotz,” Nussbaum says.