Episode 4: Susan Nussbaum

Join host Christopher Smit for an intimate conversation with award-winning author and activist Susan Nussbaum.

ANNOUNCER: From DisArt, it’s DisTopia.

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CHRIS: Hi, everybody. Welcome back to DisTopia, the podcast that looks at disability through an artistic lens, trying all the time to figure out how to be with each other in good ways. I’m your host, Christopher Smit. This episode, we talk to the award-winning playwright and author Susan Nussbaum. A born activist, Nussbaum has spent a life fighting for the rights of others by marching in the streets of Chicago–her hometown–by writing provocative plays, and crafting one of the most powerful explorations of disability written, in her novel Good Kings, Bad Kings, which earned her the PEN/Bellwether Awards for Social Engaged Fiction in 2012. As I think you’ll hear in the interview today, her voice illuminates deep questions and profound answers from within a creatively and carefully crafted philosophy of what it means to be alive and disabled. Very excited to be able to present this conversation to you today. But first, let’s talk about the art of defiance.

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So it’s July. Lots of fireworks going off, all in celebration of what we call independence. Canada Day on July 1, July 4th here in the United States, Independence Day itself. And on Facebook the other day, I found an incredible reminder of some important disability history that I think we should all be aware of as we contemplate what independence actually is. July 5, 1978:  disabled activist Wade Blank, and 18 other activists that would eventually become the grassroots army known as ADAPT, placed themselves–literally–before a city bus on a street corner in Denver, Colorado as a way to say, “Stop. Stop taking our taxes to support buses that we can’t get on. Stop making our lives difficult. Stop denying us citizenship.” There are some amazing photographs of this protest. Some of them, you can find on our DisTopia Facebook page. Now, when I look at these pictures, when I try to get into the frame, get myself into a place where I can understand what it took for these folks to jump out of their wheelchairs and lie down on the asphalt, to be in the grit and the dirt and humiliation, the discomfort of that day, I wonder what did it take for them to get to that point? I think some of us understand it, certainly those of us who have felt the sting of discrimination, who’ve absorbed the unwelcome glances of people who find our bodies and our predicaments to be completely out of the ordinary, maybe to be shocking to them or scary, or those of us who get up in the morning and feel like getting out of the house would just take too much. Health care troubles, caregiving troubles, transportation troubles, all of that stuff leads to a sort of isolation that might motivate us to do something. So how do you break that isolation? That’s the question. I think the answer to that, at least partially, is to look at what Wade Blank and the gang of 19 did in 1978 as a form of creative defiance. Learned lessons from the Civil Rights Movement, the Women’s Movement, certainly there is some heritage in what they did in Denver. But it was also a creative solution to a problem. 19 disabled people using their actual bodies, these bodies that marked them, that defined them, that marginalized them:  They used them as vessels, as symbolic barriers. They laid down in the street, and for the first time said, “This is my body. I’m gonna make the decisions about what it can and cannot do. This body is mine, and it’s no longer yours.” Now, I know I’ve mentioned this before on the podcast, but Neil Marcus, the amazing writer and poet and artist and guru from San Francisco, he was exactly right when he said that “disability is an art. It’s an ingenious way of living.” The gang of 19 knew that, even if they’d never heard that statement or even thought about it. They knew that the creativity, the tactics, the problem-solving that they all needed to do on a daily basis to get through the disabled life, that that creativity and artfulness could also lead them into political and cultural benefit. That’s what good art does; it leads you somewhere. It transforms one thing into another. It changes something. So let’s celebrate the gang of 19 in Denver, Colorado as an artful defiance, as a sort of creative chaos. Hey, gang of 19, thanks for showing us the way. And we’ll continue to try to do our work as well, here on DisTopia and all around this world.

OK, let’s move on.

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CHRIS: I spoke to Susan Nussbaum in her Chicago apartment. She was kind enough to invite us into her home, and we immediately upon getting together started telling stories to each other about life, about our lives, about our struggles and the things we celebrate and things we laugh at and things we get pissed off about. It was a real conversation, one that can only happen, I think, inside a home where you smell the coffee from the kitchen, and you look at the cat that kept building up the courage to poke its head around the doorway of Susan’s office, the creaking of our wheelchairs. You’ll hear some of that. It just felt great to spend some time with this monumentally important voice of disability culture. I hope you enjoy it.

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CHRIS: I don’t actually like rehab people. I mean they make me nervous because they have solutions, what they think are solutions to– Oh, we’re good, man. Thanks.

WOMAN: Are you sure?

CHRIS: Yeah. It’s fantastic. You know, they feel like they can–a lot of them. I shouldn’t say all of them cuz some of them are great, but maybe you’ve had that experience to where you walk into their office, and they just get this like wide-eyed look of excitement, like, “Ooh, I could fix that!” And, “Ooh, that guy looks like he might need a little tray there!”

SUSAN: That would be a dream come true for me.

CHRIS: Oh, really. You have not had that?

SUSAN: Well, maybe once or–Yeah. But I so rarely even present myself anywhere near a rehab facility or health kind of area, you know?

CHRIS: Is that conscious.

SUSAN: Yeah, oh yeah!

CHRIS: Yeah, me too, you know. We’ve had enough bad experiences, I think in particular, of muscular dystrophy clinics. I have MD, and so the muscular dystrophy clinics are sort of the networked way of going in to get help. And boy, you walk in, and you’re like a wet dream for them, you know?

SUSAN: Yeah.

CHRIS: We had five people in the room all talking about me without talking to me, and this was one of Lisa’s first experiences of that sort of attention. So it was really an odd experience. Finally, we just left. We said, “Guys, we’re outta here. This doesn’t feel right.”

SUSAN: Yeah. You go somewhere for an allergy, and they wanna know why you’re using a wheelchair.

CHRIS: Right, yeah, yeah!

SUSAN: So, really not related.

CHRIS: Yeah, yeah, exactly. Well, we excite people, you know?


CHRIS: We were in the hotel–we’re downtown–and this poor housekeeper ran into me with her cart.

SUSAN: [laughs]

CHRIS: Boy, you know, you woulda thought that she took me out. It was like she freaked out for like five minutes. Then we saw her this morning too, and she was still, “Oh, I was up all night worried about what I did” and all this stuff. It was like wow, you know? Isn’t that bizarre? People are either terrified of us, or they’re sorta worried that we’re gonna break in half. Yeah, have you had that experience?

SUSAN: I’m a person in a wheelchair.

CHRIS: Right [laughs]. Yeah, yeah.

SUSAN: Of course I have! I have it regularly. Yeah, it’s just here’s what’s hard is to stop feeling that every time people prostrate themselves with apologies just because they’ve almost gotten in your path or something, that you don’t play into it.

CHRIS: Yeah, yeah.

SUSAN: Like say, “Oh, it’s OK” or anything. I just try and ignore them completely because it bums me out that they put that on me, you know?

CHRIS: Right, right, yeah.

SUSAN: Don’t be sorry for me cuz I know that’s what sorry, in this case, means, you know?

CHRIS: Right. I think I go the other way. I think I always–I’m too nice, I guess–I always try to comfort them.

SUSAN: Yeah, I know.

CHRIS: I try say, which I should say on my good days I do that. On my bad days, I usually actually lash out [chuckles].

SUSAN: I should say that I’ve had to start training myself just to not say, “It’s OK.” Cuz it is OK. I don’t care, but it’s also not OK.

CHRIS: Right, right.

SUSAN: There’s all sorts of ways that it’s–Yeah.

CHRIS: Yeah. It’s kinda strange, isn’t it that–I’ve thought about this before–that my body puts me in a position that I have to completely retrain all of the normal human graces, right? I mean, everybody does that, I guess.

SUSAN: Well, I don’t know.

CHRIS: Does that resonate with you?

SUSAN: There’s a lotta contradictions, so–I guess around disability–because I mean, they’re always….We have everything as “special” for disabled people, and everything is “extra.” We have to have charities for disabled people, but of course, disabled people are both the poorest and the least specially-treated people. And so you know, how is that so when all of these special things are happening all around us all the time?

CHRIS: [chuckles]

SUSAN: So you just have to–Well for me, it’s a constant process of taking from that mindset what I can tolerate, and the rest of it, just trashing cuz it has nothing to do with any of us.

CHRIS: Mmhmm.

SUSAN: It has nothing to do. It’s all about a system that sort of defines what a disability is and what a disabled person is that has nothing to do with the reality of our lives.

CHRIS: Yeah, yeah. That’s right. And that’s a constant. There’s never reprieve. I always feel that way.

SUSAN: It’s like being in The Matrix, and you can’t see it [chuckles].

CHRIS: Yeah, right. Exactly. And my matrix follows me everywhere I got, so even in my own home, even in my intimate spots. It’s always there. It’s never gone. I mean, when you’re with family, it’s comfortable, and when you’re with friends, it’s comfortable. But there’s always that, it’s inside my head. It won’t leave, you know? Am I playing with my son in a way that he’ll remember positively. You know what I mean? Or am I supporting my spouse enough? Or anything. What do my students think, you know?

SUSAN: Yeah, I know. I’m trying to remember when I wasn’t disabled, which was so long ago, and whether I thought about who I was based on my lack of a disability.

CHRIS: Right.

SUSAN: I guess I didn’t, but I certainly, as a young woman, felt all sorts of social pressures. And as a young woman living in this messed up country, I felt a lot of social pressures.

CHRIS: Mmhmm. It’s interesting that you bring up your pre-disability. But you were into dance, and you were into–. No, you were acting, though, right? In other words, you were a person that had an extroverted quality, right? Didn’t that lead you in some ways?

SUSAN: I did. I must have had.

CHRIS: Where did you grow up? Did you grow up here, in Illinois?

SUSAN: Yes, and it was you know, a relatively privileged upbringing. My father is an actor. So he didn’t make much money at all for a while. And before that, he was an exterminator.


SUSAN: I know. And my mother, luckily, worked all the time.

CHRIS: What did she do?

SUSAN: She did a lotta public relations stuff for different places, and she worked for the ACLU for a while doing public relations. She sort of invented herself.

CHRIS: Does that bring political ideologies and politics and culture into your house pretty early on then for you?



SUSAN: Well, maybe.

CHRIS: Yeah.

SUSAN: Maybe it allowed it in. It was more that it was the Vietnam era.

CHRIS: Sure, sure.

SUSAN: So all of us–. And the Civil Rights era, and the dawn of the women’s liberation movement and the second wave. So there was so much going on. There was so much going on. It was all so cool, and we were all involved in all of that stuff.

CHRIS: Yeah, yeah. So you did the rallies, you did the organizing. Were you pretty deep in, then?

SUSAN: I was 24/7.

CHRIS: Yeah.

SUSAN: The revolution is Tuesday kind of person.

CHRIS: Yeah. What was that like? Do you have stories from that time?

SUSAN: Yeah, but it was wonderful. It was really great. It was, I think, it was my first real sense of community. I found all these other women that had experiences that we discovered suddenly that we all had.

CHRIS: Right.

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CHRIS: And then you grew up, you said, semi-privileged. So school, what was school like for you in this?

SUSAN: Nah, I didn’t like school.

CHRIS: You didn’t like it, yeah.

SUSAN: No, I graduated high school, and that was it for me.

CHRIS: Mmhmm. But you were obviously motivated in other ways, right?

SUSAN: Yeah, yeah.

CHRIS: Then you went to acting school.

SUSAN: Yeah, I went to acting school. I had a lot of fun. Well, I had made some friends, and I was young. You know, everything was, in many ways, easier then. Also, everything was affordable then, in those days. You could live on your own, it was pretty much on $100 or so every couple weeks, and you were OK. And yeah. So that was what happened. And then I was injured in my final year of school; it was a three-year school.

CHRIS: Yeah, yeah. Before we get to that, though, the need to act. Or how would you describe that? Cuz I’ve heard other actors talk about they felt this desire to be a performer. Yeah?

SUSAN: Yeah, it’s complicated.

CHRIS: Yeah, yeah.

SUSAN: I think some people, maybe even me, I didn’t know even who I was, almost, unless people were looking at me. Not that I wanted people to look at me all the time, but I liked the idea that I would be seen in lights and in a good way and on my terms. Also, it is a real high. It is a high after a show. You can’t sleep for some hours. I think that’s why there’s so many alcoholic actors!

CHRIS: Right.

SUSAN: You know? Everyone wants to really just go to sleep.

CHRIS: Yeah, yeah. You know, it makes me think that if you had this sort of need to be known, need to be seen, as so many human beings do, and then the disability happens. All of a sudden, you’re on a different stage in some ways, right?

SUSAN: [chuckles] Yes.

CHRIS: Right?

SUSAN: The stage where no one ever looks!

CHRIS: Right, right. But yet, they do look, right? There is that staring.

SUSAN: Yeah.

CHRIS: I mean, don’t you think in some ways disability is a sort of constant performance? Have you ever thought? You’ve thought about that, I’m sure.

SUSAN: Again, it’s a contradiction where we are stared at, and yet we’re invisible.

CHRIS: Right, right, yeah.

SUSAN: I have a friend who made these–and I’ll show it to you later. It’s a long list of paradigms, you know, contradictions that have to do with the disabled person’s existence in the world. It’s really incredible.

CHRIS: Yeah, yeah. So the accident happens, and you’re in rehab for a while?

SUSAN: Yeah.

CHRIS: How long?

SUSAN: Long time, seven months. But long time ago.

CHRIS: Yeah.

SUSAN: It really….I think the worst part for me, the only part that was–. No, no. That’s not true. You know, time goes by, and you tend to sugarcoat things, but of course it was traumatic, as they say. But I do have to say that I found myself in a community of one, which I didn’t like. I was always a social animal, and I had a social perspective on the world that social change was important and that we do that in groups. The bigger the group, the better the change, right?

CHRIS: Mmhmm.

SUSAN: So when I heard that there were the teeny-tiny first baby steps of a disability rights movement, and I was already a socialist, to the extent that I understood what that was at the time. Then, I was there. I was all over it. I went into the Center for Independent Living in my city, Chicago, and it was a teeny place then, maybe 10 crips. They were all disabled people, you know?

CHRIS: Yeah, yeah, yeah!

SUSAN: Aw man. And different disabilities. I felt, for the first time, both seen and not seen in the right way, OK? People saw me as, you know, another crip, and that was OK. Those were on terms that I liked. It was maybe a couple days there only, cuz I immediately, I talked myself into a job. It was a couple days of being there, and I was transformed. That’s what I wanted to do when I became an organizer later on, as a disability rights organizer, and I was working with groups of high school girls. I wanted to give them that experience, not just around disability, also around reproductive rights and all the rest of that stuff. But I really hoped that they experienced some of that coming into yourself that you do. Did you have that?

CHRIS: I did not have that until later in life.

SUSAN: But you had it?

CHRIS: I did, but it took longer than 48 hours, like you’re mentioning. For me, I think, my brother and I–who also, he has MD–we grew up in a home that–. We’d been disabled from birth, so we grew up in a home that was very encouraging:  Do whatever you wanna do. You can do anything. Which has been a splendid part of my life, but also a part of my life that kept me from realizing my disabled identity for a long time. In fact, my brother and I joke that–I’m 41, he’s 47–we’ve only been disabled for 15 years.

SUSAN: [chuckles]

CHRIS: I mean really, that’s how fucked up it is because we sorta think in our minds that I did not open my heart or mind to other disabled people for maybe it’s been a decade now that I’ve done that. So I’m jealous. I’m jealous when I hear you say that you had that sort of epiphany so quickly. I was gonna ask you:  Do you think that’s rare? Because I think it’s rare.

SUSAN: I don’t know.

CHRIS: But maybe it’s just my own personal experience.

SUSAN: I kinda thought–. Well, all right, it’s different. Both my experience of becoming was sudden; yours wasn’t. You knew disabled people in one way or another throughout your youth. I didn’t. So for me, to find out suddenly that everything I’d learned, everything, about what disability was and what it meant for my life, that I wasn’t going to be sitting around in front of the television forever, watching like religious television shows or something, waiting to be cured. I needed that. I needed to know. I needed to hear it from other disabled people. I needed to see them in action to know that I was OK, because I could do all of that, eventually, myself.

CHRIS: I always felt distant from my disabled siblings, disabled peers, not sibling. So I grew up in Downers Grove, not too far from here, and went to a very experimental program that had a lot of money put into it. So we were all mainstreamed, and I was mainstreamed from Kindergarten on. All my friends were able-bodied or temporarily able-bodied. The disabled guys I knew, I was on a floor hockey team with, or I would go on special trips with, or I would hang out with at lunch. But I never hung out with them. I’m realizing that within the last couple years. I felt distance from them, again, because I had what was maybe a more normalized experience of disability or sheltered or I mean, pick your word, I suppose.

SUSAN: Or maybe you internalized a sense of superiority.

CHRIS: Of course I did, yeah.

SUSAN: Or a desire not to be identified in that group.

CHRIS: Yeah. That’s right. That’s right.

SUSAN: You bastard.

CHRIS: Yeah, I am a jerk, right?

SUSAN: Now, I don’t like you.

CHRIS: [laughs] We’re done. Thanks for the interview.

SUSAN: Yeah!

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CHRIS: The move from awareness to advocacy, I don’t know if that’s a natural move. I guess I wonder about that, sort of figuring out who you are as a disabled person, and then being an advocate. There’s that extra step that, for whatever reason, took me a long time to get to.

SUSAN: But I, remember, was an advocate before.

CHRIS: Yeah, right. Right. So that’s a real important part of your philosophy.

SUSAN: And I knew how to organize a demonstration. So we needed people like me around there.

CHRIS: Yeah. So are you working with Mike and ADAPT–Mike Ervin.

SUSAN: Not anymore.

CHRIS: But at that time, though?

SUSAN: Oh yeah!

CHRIS: Yeah, that was it, right? What were those days like? What does that look like? What are your memories of that?

SUSAN: It was fun. It was a lot of protesting. I remember Mike, we used to bust into the Chicago Transit Authority’s Board meetings. They’re just like people would imagine what the Chicago Board of Directors of this group would look like. They were, you know, cigar-chomping white guys.

CHRIS: Yeah, yeah, yeah! Right.

SUSAN: Michael would–he’s this other, as you know, disabled guy, really funny guy–he would bring a cigar to these meetings and chomp on it. We’d all be sort of outside the glass windows of their meeting room, just making it impossible for them to do whatever they were doing, which was probably nothing much to begin with.

CHRIS: Right.

SUSAN: So yeah. And we had protests outside too. It was fun. Then, we had a big lawsuit, and we won.

CHRIS: And you won. Yeah.

SUSAN: We sued the CTA.

CHRIS: Yeah, yeah. I mean, Mike Ervin and I talked, and one of the questions I asked him is, “What’s it like to ride the bus here, now that you know that you were instrumental in making that happen? I don’t assume that you use the bus all the time now, but when you do, how’s that feel?”

SUSAN: Are you asking me?

CHRIS: Yeah, I am! Yeah, yeah!

SUSAN: Oh, yeah! I take it whenever possible, and it’s not usual, I suppose. But I mentioned that this was, that the bus is accessible because–. Like, when I see mothers or elder people using the ramp, I think to myself, “Oh gawd. If only they knew…what I went through for that!”

CHRIS: [laughs] Right, right. My gawd! What I did for you!

SUSAN: It’s terrible! But yeah, I love it. I love it, and I always thank the bus drivers, especially if they’re nice.

CHRIS: If they’re nice, yeah.

SUSAN: I remember one time, nobody would move out of the folding up bench where you sit when you’re a crip, and it was a crappy night. It was probably rush-hour traffic, real crowded bus. And the bus driver stoop up. He had to get behind me so that he could holler at the people to get up. I said, “Well you know, it’s OK. It’s OK.”

CHRIS: Right, “It’s OK,” yeah, yeah.

SUSAN: Or something like that, right?

CHRIS: Yeah.

SUSAN: You know, “I’m sorry.” The bus driver leans down, he says to me, “Take your time. Don’t worry about it. Don’t worry about it. They’ll move.” And I just fell in love with him instantly!

CHRIS: Of course, yeah, yeah.

SUSAN: What a great guy he was.

CHRIS: Aw, that’s just such a sweet tale of this need for community and desire for community that’s authentic, right? Did you guys have many able-bodied allies during those days, those early days?

SUSAN: Oh, many! Of course.

CHRIS: Yeah, yeah. And they would come with you?

SUSAN: Yes, yes!

CHRIS: Aw, that’s fantastic. You see those people anymore?

SUSAN: I do from time to time, and sometimes I get a hit on Facebook or something like that. I see something on Facebook. Sure.

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CHRIS: So the advocacy with the young women, that starts pretty early then. I guess the most recent manifestation of that is the Empowered FeFes, but was there more of that?

SUSAN: I did it before, when I was in the Chicago Women’s Liberation Union. Before I was disabled, I organized high school girls. Isn’t that weird?

CHRIS: Yeah.

SUSAN: And I didn’t realize it until years after I started working with girls as a disabled person. Because I started with the girls at Access Living because money became available for it.

CHRIS: Yeah, sure.

SUSAN: Suddenly, there was this foundation, and they wanted to fun girls’ programs. That’s what they wanted to do.

CHRIS: That’s awesome.

SUSAN: It was fantastic. So they’re gone now, but for the time that they lasted, a lot of amazing work happened all over the city.

CHRIS: What’s the issues facing a young woman with a disability?

SUSAN: There’s nothing to do.

CHRIS: Yeah, talk about that.

SUSAN: The schools have no programs and after-school programs. There’s a lot of segregation. You have to ride the “special” bus. So your life is regimented around that. And as a disabled person, you have a certain amount of, you have to have a bit of military precision about your life anyway because you have to be well-organized just to get ready in the morning.

CHRIS: Gawd, isn’t that the truth?

SUSAN: Yeah, yeah.

CHRIS: My goodness. I sometimes wish people–I wanna come back to the girls, but–my wife and I always talk about this idea that on the outside, we look pretty together.

SUSAN: Yeah, like we’re not real tired from getting up two hours earlier than regular people.

CHRIS: Right. Yeah, yeah, yeah. But again, that’s a pressure that we feel. I’ve been experimenting a little bit in the last couple years with a sort of extreme realism, extreme honesty with people. Like my students, if I miss a class cuz I’m on the can too long or something happens and whatever, I just go to class the next day, or I email them, and I say, “Look. I got this uncontrollable body, man. I can’t.” And they sorta get it, you know?

SUSAN: That’s not extreme.

CHRIS: Yeah, well it seems extreme.

SUSAN: You have to break them in.

CHRIS: Yeah, yeah. But there is that sort of regiment that most people just don’t get. To be honest, I spend a lot of my life making sure that they didn’t get that, making sure that that was my private experience, you know?

SUSAN: Yeah.

CHRIS: Do you do that? Do you do that too or no?

SUSAN: Gawd, we’re just, we’re a mess, aren’t we?

CHRIS: Sure.

SUSAN: Yeah. I do my best to be together so that when I appear somewhere, I look like I’m ready. The truth is, I’m pretty tired most of the time, you know?

CHRIS: Yeah, all the time! That exhaustion is hard to explain to people, don’t you think?

SUSAN: And I like to stay up late too. So it just is a barrel that has no floor.

CHRIS: OK, so you’re screwed both ways. So then you talk to these girls. Do you talk about stuff like that? Do you talk about–

SUSAN: Oh, everything.

CHRIS: Everything, yeah, yeah.

SUSAN: I wanted them to be able to talk to each other and to value each other, and they did. That’s the biggest thing that came out of it, I think. They used the word “sisterhood” and “sister” with each other. And they never–or they worked hard at not–fucked each other up or betrayed each other. They were sisters, and some of them are still very close. Many of them are.

CHRIS: Mmhmm. How many of them can you keep up with? Do you see them?

SUSAN: Sure, I do.

CHRIS: I mean, Facebook and online life makes that a little easier, I suppose.

SUSAN: Well, actually, one of the girls is, she became my daughter. That’s a long story. We don’t have to get into it, but we talk constantly.

CHRIS: Of course, yeah.

SUSAN: She’s in Chicago, married, busy, works full time. So she’s a pistol.

CHRIS: So we don’t have to talk about that much, but that’s pretty amazing that that would be part of an outcome of that work.

SUSAN: Yeah, it was cool.

CHRIS: That’s pretty amazing.

SUSAN: Yeah, I guess I wanted to. I’m good with kids. And by kids, I mean teenagers so.

CHRIS: Now, where the hell does that come from?

SUSAN: Who knows?

CHRIS: Cuz I’m not good with teenagers naturally. I don’t think a lot of people are. What makes you good with teenagers? And can you tell me so I can–

SUSAN: Oh, I was a miserable teenager.

CHRIS: Oh, you were, yeah.

SUSAN: So I think that’s, I figured however miserable they must be couldn’t have been more messed up than I was.

CHRIS: Right, right!

SUSAN: It gives me great empathy for girls growing up. Boys too.

CHRIS: Boys too, yeah. But it’s different though. It’s different for boys, isn’t it?

SUSAN: Yes, but you know yes and no.

CHRIS: Yeah, yeah.

[music break]

CHRIS: When does writing really grab you? When do the plays start germinating in your mind?

SUSAN: Oh, I don’t know, but here’s the thing:  Becoming disabled was fertile territory cuz like no one was writing about it or interpreting its emotional impact or its lived experience.

CHRIS: Yeah.

SUSAN: Nobody did, that I knew of at the time. There were people. Certainly, nobody was interested in whatever we might produce, if we did. But at the time, I was concerned that I couldn’t, I wasn’t performing anymore. Although, I actually did perform. But my first plan was to start, along with my regular job, to start writing plays so I could get onstage. I put parts for myself. That worked out well for a while and did a lot of work and had some good success. And then, to make a very long story short, wrote a bunch of plays over the years. Some were good, some were really good, some were maybe not very good. Then, I finally hit on something that was really good, I thought. Actually, I reread it for the first time in many years last year, I think, and it definitely needed work!

CHRIS: Yeah, yeah, yeah.

SUSAN: I have to say now, in all honesty. But at the time, I couldn’t believe I couldn’t get it produced. I had always had my plays produced somewhere or another. I came so close a bunch of times. I couldn’t get it produced, and I became very pissed off about that, very bitter. I couldn’t break through. I just wanted to break through. I wanted to be like you know, playwrights who had, August Wilson, who’s writing all these incredible plays about the African-American experience in America that were crossing over. He was making money, also. Well, I couldn’t do that, and I knew that we had to have disabled people interpreting our own experience cuz the other interpretations of disabled characters out there were so vile in every way.

CHRIS: Right, right!

SUSAN: They were wrong, wrong, wrong! They couldn’t be more wrong. They continued to be wrong, and no one really gives a shit except for us.

CHRIS: Yeah, yeah.

SUSAN: But I had a big chip on my shoulder about the whole theater thing and stopped. And then, some years later, I just decided to write a book.

CHRIS: So the chip stopped, or the writing of plays stopped?

SUSAN: The chip never stops.

CHRIS: The chip never stops.

SUSAN: Never stops.

CHRIS: Right, right.

SUSAN: The chip on the shoulder is–

CHRIS: Is the fucking fuel of the fire, man. Right? Yeah.

SUSAN: I don’t know. It’s so stupid.

CHRIS: So the book, which–

SUSAN: Here’s the thing: I got very lucky with the book.

CHRIS: Well, maybe. You’re being humble.

SUSAN: No, no. Good book, but I won a prize, and that’s what put the book–. I sorta crossed over in that sense.

CHRIS: Mmhmm. So Barbara Kingsolver finds the book, reads it, or is given the book, or it’s nominated. How does that whole process happen?

SUSAN: There was a contest that my sister told me she heard about that Barbara Kingsolver funded, this big prize that came with a publisher, a good publisher. And because Barbara Kingsolver wanted people to be writing fiction with social justice issues, but it had to be written in a non-preachy, non-didactic way. It had to be good writing, in other words. So I was writing the book long before I heard about the contest, but as soon as I got together a relatively good first draft, I sent it in. And ultimately, I won. That was a big deal.

CHRIS: Yeah. And that’s an affirmation. Oh my goodness, yeah.

SUSAN: Oh yeah.

CHRIS: I’ve heard you talk before about writing that book as being maybe the hardest thing you’ve ever done, right? This sort of drafting and–

SUSAN: It’s hard, yeah.

CHRIS: Yeah. But was it a difficulty that was also painted with joy, that you just loved the difficulty too?


CHRIS: No? [laughs]

SUSAN: Here’s what was good:  After you get a first draft, and that’s awful, especially because I’d never written anything like that, and it’s hard. I think it helps to have an education, and I had not gone to college, really. And I had plays in my head more than literature, although I read novels all the time. So let’s see. After that though, when you have that template of a first draft, you go through, and you start rewriting. That’s fun. That’s fun. You get into it. You don’t have to suffer a lot by just getting it down in the first place. That’s so hard. And not judging it and not giving up because it sucks, and it does suck. Everyone should know that their material, whatever they write, is not gonna be good unless they’re geniuses, until they fix it a lot. So just keep writing. That’s the thing.

CHRIS: Right, right.

SUSAN: Just don’t judge yourself. Don’t judge yourself. Don’t. Don’t. Or judge yourself and say, “Yes, it’s not good. That’s good! That’s OK. It’s on the page. Good! I’ll come. It’ll be good then.”

CHRIS: Yeah.

[music break]

CHRIS: How much of Good Kings, Bad Kings, as I read it or have had students read it, I put journalism on the sidelines of it so that they can see the connections between some of the realness of the book. How did you balance the realness of the stories of living in an institution versus the creativity that you brought to that book? That was such an interview-y sorta question, but I think a lot of people might wanna know that.

SUSAN: Well, the realness, the real stories and articles I read and law journals, little law journals, you know, little things like that, are the main thing you have to stand on, for me. They’re the thing. Out of that comes, you need to tell a story about that. So you’re imagination brings characters. Me, I know a lot of disabled people, and I know a lot about what happens when people are disabled in their lives. So I had this huge edge over anyone who’s ever written disabled characters before but didn’t know a disabled person. So I invented some characters. Some of the voices were very familiar to me, some not. They just came. So that comes later, and that’s just the fun of it. That’s just you. And then you try and piece in motives and obstacles through the factual pressures on people.

CHRIS: Mmhmm, mmhmm.

SUSAN: The book is written in first person, from the perspective of a bunch of different people. So one chapter is narrated by the person in that chapter. So I just wanted disabled characters to be as self-realized and sorta up front representing themself, not having someone else tell their story or talking about them. But they had their own voices because that’s what we don’t have in the real world.

CHRIS: Right, right.

SUSAN: So that was important. I can’t remember why I started–

CHRIS: Is that why art is important for the disabled community, cuz it gives voice?


CHRIS: Cuz it gives authenticity?

SUSAN: Certainly, certainly.

CHRIS: Yeah.

SUSAN: It’s also a weapon.

CHRIS: Yeah. Talk about that. What do you mean?

SUSAN: Well, I think there’s this Brecht quote about how art is a hammer, and you just have to wield it correctly.

CHRIS: Right. Right, yeah.

SUSAN: I agree with that. You can’t put that on the back cover of the book, though, and expect anyone to buy it.

CHRIS: Right, right.

SUSAN: That would be like dude, that sounds really bad!

CHRIS: Yeah, that sounds like something I’d like to read on a Friday night. Yeah, right.

SUSAN: So you have to just be very sneaky about it, and you do that by staying as specific as you can with the characters and who they are, imagining some of the details about who they are.

[music break]

CHRIS: So you’ve been an author, you’ve been a voice, but you’ve also been a subject. I look at your coffee mug, and there’s a portrait of you, right?

SUSAN: Yeah, I know.

CHRIS: There’s a portrait of you don by Riva Lehrer. What’s it like to be a subject? How’s that different?

SUSAN: Well, that was uncomfortable because the artist, Riva, she looks in your eyes the whole time, and you have to look back. So that was….I don’t think that’s true of all of the people she does, but it was….The truth is, I am now, later in life, I’m really quite private, and I don’t tolerate groups for very long, you know? I like my time with my apartment and my safe space and all that. And so yeah, it was difficult in a way.

CHRIS: Mmhmm, yeah.

SUSAN: But boy, what an honor and fun and you know, love Riva. Mostly just a huge honor.

CHRIS: Yeah. Is it hard to cultivate that privacy, as a disabled person? In other words, people maybe have caregivers around? Is it hard?

SUSAN: I think you have to think about it differently. It’s hard, I suppose, if you don’t have, if your caregivers or your assistants aren’t, if they’re telling you what needs to be done as opposed to the other way around. Then, well, you don’t have much control over your space or your choices at all. So then you are robbed of your own sort of autonomy. But I think about it differently. I just think about it as a different way of doing things, and that it’s a way that allows me to live my life. So that’s OK.

CHRIS: Yeah, yeah.

SUSAN: And it’s also, here’s the other thing:  These people that actually do, for a living, the work of helping disabled people getting dressed, getting together, whatever the tasks are that you need help with, for my own part, I was terrified of that when I knew that was gonna be a big part of my life. Because I thought these people will come, and they’ll abuse me.

CHRIS: Mmhmm, mmhmm.

SUSAN: And has that ever not ever happened! I can’t even tell you how cool these people are, how many cool people are out there, how I love many of the women that have been in my life as my assistants over the years. Some of them have been my assistants still, after a decade or more. So yeah. It’s not what like I think older people think, for example, it’s cracked up to be. Like, that’s a fate worse than death to a lot of people, but really, it’s not. It’s so not. It’s really kind of fun sometimes.

CHRIS: Yeah, yeah.

SUSAN: Takes you out of your world.

CHRIS: It sure does, yeah. It sure does. Yeah, you have these experiences with people, and it’s a very hard relationships to define for other people. The intimacy but also the trust, and it’s something quite beautiful when it works out, right?

SUSAN: And the matter-of-factness of it all.

CHRIS: Of course.

SUSAN: I think that much more abuse, if not all, I don’t know. It’s hard to know. Disabled people rarely report abuse because they can’t for various reasons. But I think it happens with families much more than–within families than–when you’re a person living in the community and hiring people to work for you.

CHRIS: Yeah, that’s right. That’s right. So is there an idea germinating now? What are you doing now? What are you working on now?

SUSAN: Another thing. I don’t wanna say the word.

CHRIS: Of course, yes, yes. But you’re working.


CHRIS: And you’re happy with what you’re working on.

SUSAN: Well, no.

CHRIS: Well, -ish. Right, right, right. Yeah, yeah. But that’s still a constant for you. It’s a daily–

SUSAN: I’m happy doing that now. I’m much more likely to get in the zone now than I was the first time around.

CHRIS: Right, right.

SUSAN: It happens pretty quickly. I just go over there, and I open the file, and I’m there. I’m in the zone. It’s like I’m, it’s nice. I don’t think that has any affect on the quality of the work. It could really be, I can say without fear of contradiction I think, that as it is at the moment, it sucks!

CHRIS: Right [laughs]!

SUSAN: It stinks. Whatever’s on that computer, I don’t wanna know.

CHRIS: Right. But the draft will come, right? That’s what you’ll wait for.

SUSAN: That’s the theory.

CHRIS: Yeah, yeah. Well, thanks so much for talking with me, Susan.

SUSAN: Oh, it was my pleasure.

CHRIS: Thanks for having me in your home. It’s beautiful.

SUSAN: Yeah.

CHRIS: It’s awesome. Thank you.

SUSAN: Any time.

CHRIS: Awesome.

[theme music]

CHRIS: Our big thanks to Susan Nussbaum. What a amazing person, and we really appreciated getting to talk to her and getting to know her a bit. We hope you enjoyed it as well. If you haven’t read her work, if you haven’t read Good Kings, Bad Kings, do so, and your life will be different after you do it. She’s just an amazing author. Listen, before we go, don’t forget that we want your voice. We want you to be part of DisTopia and the conversation. Go to DisTopiaPodcast.org and hit “Submit Your Voice.” Tell us your stories, tell us about your caregiver troubles or your caregiver victories, pitch a story to us, make a story. In short, we need to do this together, and we need you to submit your work so that we can hear you. We are here to listen. So please go to DisTopiaPodcast.org and submit your voice to the podcast. DisTopia is a production of DisArt. For more information on DisArt, go to DisArtFestival.org. You’ll see that we’re taking submissions for three different things. We’re looking for designers to make some amazing clothing for our next fashion show coming up here in the fall. We’re also looking for models for that fashion show, beautiful, sassy, disabled people who wanna get up on the runway and show off what they got. We’re also taking proposals for our first symposium in 2017 called Disability Arts Now! We are taking proposals from artists and scholars and critics and local arts organizers. We wanna get together and do some thinking and talking together about disability arts and where it’s headed and where it’s been and what we can all do to make it better. So take a look at that stuff at DisArtFestival.org. All the links are there in the menus. DisTopia is produced by Liz Wade. Music is always from The New Midwest and David Molinari. We get help for every episode from DisArt’s managing director, Jill Vyn. I’m your host, Christopher Smit. Talk to you soon.

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