Music credit: “New Life” written and performed by Antonio Sanchez from the CD New Life. Simi Linton: Disability culture, and it's a term that we use very often to articulate this phenomenon, this growing phenomenon of disabled people writing our own stories, producing our own stories, acting in our own stories, dancing our own dances. Jo Reed: That was a leading national advocate for Disabilities in the arts, Simi Linton. And this is Art Works, the weekly podcast produced by the National Endowment for the Arts. I’m Josephine Reed This week, we mark the 25th anniversary of the Americans with Disability Act with Simi Linton. Simi is a writer, a filmmaker, and a leading expert on disability and the arts. Throughout her career, Simi has worked with a diverse range of cultural organizations, including theatre companies, film and television producers, museums, and the National Endowment for the Arts. Her goal is to make genuine the way disability is represented in all art forms, to increase that representation, and to make visible the artistry of disabled people. Simi Linton was born able-bodied, but when she was a young woman, an horrific car accident killed her husband, her best friend, and paralyzed her legs. She writes about this and her struggle to regain her life as a disabled person in the memoir, My Body Politic. Over the years, Simi completed a PhD, she remarried, and she became deeply committed to the disability rights movement. Focusing on the arts, she’s become a trailblazer in insisting on complex, nuanced representations of disabled people and pushing to have people with disabilities represent themselves on stage, screen and in the dance studio. Simi Linton is not one to dress things up nicely: although she’s often funny, she’s not afraid to ask hard questions and to give hard answers. I began our conversation with one of her more memorable statements: Jo Reed: You’ve said, "If I hear the term, people with special needs one more time, I'm going to punch somebody." Tell me why. Tell me why you're going to knock somebody out if you hear that again. Simi Linton: My problem with the term "people with special needs," needs to be understood in somewhat of a context of the use of the term and the term "special." One of the problems in kind of the history of discourse about disability is that there is a tendency to individualize disability. That it's seen as the individual's problem. And instead, in contemporary and progressive versions of disability, and within the disability rights movement, and within disability studies, instead of at the individual, we look at the environment and society to understand better how that environment is accommodating, is just, is beneficial to all of its citizens, including disabled people. And by calling some people, "people with special needs," it puts the burden on the individual, as if our needs are special. And I don't feel that my needs for transportation, or my needs for education, or my needs for employment, or housing, or to vote, let's say, I don't think those are special needs. I think those are ordinary needs that should be accorded to all citizens. Jo Reed: You call yourself a disabled woman. You put disability at the front and center. And this had to have been sort of hard-fought and hard-won for you, to be able to do that. How did you arrive there? Simi Linton: I've lived as a disabled woman for many years, and I agree, it took me a while to get there. I mean, when I first entered this world, the operative term was "the handicapped." And I rejected that straight out and then the People First language, which is still very often used these days, people with disabilities, or some people describe themselves as a woman with a disability, came around. I don't know when to place it. Probably somewhere in the '80s, and that worked for me for a long time. And then I came to understand more clearly that disabled people are marked by disability. It's a choice that society makes to mark us and designate, quote, "special treatment." And by that I mean that we don't have access to the full range of things that other citizens have access to. And so, because disability marks me, I choose to mark myself and to claim it and to put it up front. And until we live in a post-ableist world, if that's ever going to happen, I'm going to call attention to the fact that I am marked, and mark myself. So I put disability front. So I call it Disability First language, as opposed to People First language. Jo Reed: There are many, many ways to be an activist for disabled people. One of the ways you've chosen is to focus on the arts and disability. Tell me why you chose that. Simi Linton: Because I like it. Jo Reed: Good reason. Simi Linton: There are a number of reasons, though. I mean, the arts serve a very important function in a democracy. And the arts are a way to get ideas out there in shapes and forms that get people to think in ways that a textbook or a legal statute will not. And the arts are provocative and interesting ways to get ideas and to imagine a new society, and to imagine a new life that is more integrated and equitable for people. So, I have been working, oh, for the last 20, 25 years as a consultant to a number of arts organizations, most recently Dance NYC, which is an organization based in New York that is, that generates interest in and is focused on stimulating dance in New York. And I also then, oh, a few years ago, teamed up with filmmaker Christian von Tippelskirch, and together we have made a documentary film called, Invitation to Dance. And it's a film about my life as a disabled woman, using my story as a point of entry to tell the larger historical narrative of the growth of the disability rights movement. And we've called it Invitation to Dance because it's alternately a coming out story of disabled people being out in public and claiming public space on the dance floor, on stages, in the streets, and other places where we make our presence known. Jo Reed: Let's talk a bit about the Disability, Dance, and Artistry Conference. Let me say, I think when most people think of dance and disability, they think, if they ever think of it together, they think of it as an unlikely pairing. Help us with our thinking on this. Simi Linton: Yeah, I think that people don't usually put those together, don't see dance and disability as a likely pairing. Or if they do, they see the dance that is done by disabled people as part of a therapeutic regimen. That it's something that is done for disabled people to help them exercise or feel better about themselves. And the initiative that Dance NYC has undertaken, and last week's all-day convening is, was a wonderful, wonderful boost to the idea that disabled people belong on the dance floor, whether in social situations, or we belong onstage, if that is one's inclination, and it is a new idea, and a radical idea in many ways, because so often disabled people have been taught shame, have been made to feel that our bodies are something that we should hide, or mask in some way, and certainly not flaunt our bodies in ways that call attention to them. And what disabled dancers do onstage is dance. And dance is about showing your body, and having people stare at it, and it's counterintuitive to so much of both what disabled people are taught to feel about our bodies, but it's also counterintuitive in terms of what the public has been taught about those shields between them and us. Jo Reed: I thought the third word "Artistry" was the most interesting one in that. The most necessary. Disability, Dance, Artistry. That it is about a pursuit of artistry, and it's about rethinking, not what artistry is, but what a disabled dancer brings to the dance. Simi Linton: Yeah, yeah. It took us a while to come up with that title, but I think it's pretty darn good. And the dancers, the disabled dancers who work either in companies that are comprised all of disabled dancers or in what we call physically integrated companies, which incorporates both disabled and non-disabled dancers, are very much about their art. And what they produce, you know, not every company, you know, there's variation in the companies, but some of them do extraordinary work, and it's changing the face of dance. Jo Reed: There was a performance I saw called The GIMP Project. Tell me about the choreographer, Heidi Latsky, and, oh, well, what she does with both disabled dancers and non-disabled dancers. Simi Linton: Heidi Latsky is a choreographer and a dancer with a long career. She danced with Bill T. Jones, and had her own company for a number of years, and she began working with disabled dancers, oh, gosh, I've lost track of time, but I think it's about ten years ago integrated disabled and non-disabled dancers on the stage, and did the first project was called The GIMP Project, and she's gone on and done a number of other productions. The company has performed all over the United States and is a really exciting blend of dancers of varying kinds with varying perspectives and various bodies that they bring to the stage. Jo Reed: As an audience member, it's really quite extraordinary. I remember being just so impressed by what I was seeing on that stage. And the movement of all those bodies. She’s one of the choreographers who's doing some just really extraordinary work with this. And she's not alone. Simi Linton: No, she's not. There are physically integrated companies throughout the United States and throughout the world. The most recent number I've heard is about 100 in the US alone. You know, and those are companies with varying degrees of visibility in terms of the kind of cultural institutions they perform at and the kinds of audiences they get. And then there are companies around the world. This is not an isolated phenomenon. Jo Reed: You’ve said dance is the place where disability rights and disability culture come together. Simi Linton: Well, I think disabled dancers onstage is a pretty bold act. And it's staking our claim to a space that has been denied us. And, you know, there are no laws that prevent us from being onstage, but there are the unwritten laws, and I think that we need to go up against the unwritten laws as well as the written ones. And so I think disabled dancers onstage is a way to do that. Jo Reed: When did you begin to dance again? How long did it take you? Simi Linton: Well, I'm not a performer, I'm a social dancer. And it took a few years after I became a wheelchair user to get on the dance floor and what prompted me were comrades and seeing others with disabilities out on the dance floor and made it seem possible in ways that I had not imagined prior to that time. Jo Reed: I would imagine, and please correct me if I'm wrong, that the work that you're doing with disability and the arts, is probably three-pronged. Probably 20 years ago, a lot of it was about audience accessibility. And then the way disabled people are represented and who's representing them. And then I would have, you know, is there disability culture, and how can that be best represented on that stage? Simi Linton: Yeah, when the idea of disability and the arts sort of started to rear up, it was largely about audience, whether at museums or in theaters and so forth. That's never been my focus. I think it's an important focus, and as an audience member I want to make sure there's-- at lots of different kinds of cultural events, I want to make sure there's access. But my focus has always been on what's onstage or onscreen. My focus has always been content. And yes, what is represented and who is representing us because disability has always been onstage. I mean, you can think of the history of theater, you can think of the history of dance, you can think of the history of film, and pick out disabled characters in every one of those modalities. But the mammoth difference is whose writing those, who's acting in those, or dancing in those, and what are the ideas about disability that have been historically put forth. Jo Reed: What were those ideas that were historically put forth? Simi Linton: That disabled people are evil or scary. That disabled people are saintly. That disabled people are asexual. That disabled people are bitter and vengeful. That disabled people are Captain Hook, out to get you, or other such ideas. And you know, I mean, we joke in the community that the surest way for an actor to get an Academy Award, a non-disabled actor, that is, is to be assigned a role where he, mostly he, but he or she, plays a disabled character. Jo Reed: How did you get started working with theaters and museums and films and dance companies? Simi Linton: Well, when I was a young'un, I studied theater and dance and I studied art, and grew up in New York City, and was very much tuned into the, as much as I could be as a teenager, into the cultural scene in New York. I started going to museums and to theater and dance when I was very young. And it was in my blood. And then I let that go for a long time, and I taught at Hunter College for many years, teaching Child Development, and General Psych courses, and also courses in Disability Studies, which is a flourishing academic field, which is growing. I decided to leave teaching in order to write a memoir. It was at a time that I began to realize that the arts were something that was just emerging as a viable area of inquiry in terms of disability issues. And I then turned myself over to that. Jo Reed: Did you meet resistance at first? Simi Linton: Oh, sure! Sure. I mean, I met resistance from cultural institutions that really didn't see the kind of content that we're talking about as viable content. You know, they thought about it as, any art that disabled people did, whether it be dance, or a painting, or whatever, was the purpose was for therapy. That it was therapeutic, that it wasn't real art. So there was that kind of prejudice. In terms of theater programs, and dance programs, and academic institutions, and as a former academic myself, you know, I can talk their language. Talking to them about broadening their programs, and considering admitting disabled students into their programs and so forth. So there was resistance there. And not from everybody. There's some amazing, wonderful, open people who see this also as an exciting moment. And, you know, I think we're seeing a shift. But there certainly is discrimination. And I have colleagues who work in theater, let's say, in the casting process, who talk about discrimination in employment in terms of auditions and things like that. Jo Reed: I'm sure there have been moments when you've been an audience member, and you've wanted to just pull your hair out. Simi Linton: Yep. Jo Reed: But I'm sure there have sort of been moments where you have been just overjoyed, and more than pleasantly surprised by what you've seen on the stage or on the screen. Can you share one of those? Simi Linton: One moment that excited me was a production that happened a number of years ago. The play called, The Gospel at Colunus, with music by Lee Brewer. And it was based on the story of Oedipus. And Oedipus, as we know, in Greek mythology was blind. And this was a musical rendition. It was part Greek tragedy, but it was set in a black gospel church. And Oedipus was played by the gospel group, "The Five Blind Boys of Alabama." So not only was Oedipus actually blind, probably a first in theatrical productions, but he was played by five men, and in doing that, it made blindness, both more metaphoric, because it was sort of hyped up, but it also made it in some ways, more concrete, because here were five blind men in front of you, and the reality of their experience was visceral. You know, the way they came onstage, they hand their hand on the shoulder of the man in front of them, and they were led onstage by a sighted person. So, that was a moment that maybe might not go down in the annals of disability arts as one of our moments, but it certainly was a moment. Jo Reed: And I'm glad you brought up "The Blind Boys of Alabama," because they have gotten a Lifetime Achievement Award from the National Endowment for the Arts. Simi Linton: Okay! Well, I'm glad to call them out, because it was a magnificent production! Jo Reed: It's the 50th Anniversary of the Arts Endowment but it’s the 25th Anniversary of ADA. Can you give us a snippet of the circumstances that led to ADA? And the things that have changed in the past 25 years that, with luck, we take for granted now? Simi Linton: Yeah, I mean, this summer, the 25th Anniversary of the signing of the Americans with Disabilities Act, and I have witnessed an incredible change in terms of issues of transportation and the availability of accessible venues. For me now getting on an airplane is something I do much too often, but you know, is something that years ago was a huge issue. You know, "Oh, we can't take you today," or whatever. You know, now they know they have to. And there have been enormous changes. There's still massive unemployment. There are still huge, huge obstacles. The unemployment rate and the poverty rate among disabled people is through the roof. It’s a horrible situation. And yet, for those of us who are out there and in the workplace and in public, there have been appreciable changes. And we do have increasing numbers of platforms, such as this, and I appreciate having this opportunity, increasing numbers of platforms in which to get our ideas out there to the public. Jo Reed: And as you've mentioned, and I really would just like to reiterate, the arts is clearly just one of those places that opens windows to the complexity of disabled people. Simi Linton: Yeah, you had asked earlier about disability culture, and it's a term that we use very often to articulate this phenomenon, this growing phenomenon of disabled people writing our own stories, producing our own stories, acting in our own stories, dancing our own dances. Making films. I've written a couple of books, but making a film was a way for me to articulate many of these ideas, and I worked with an experienced filmmaker, as I had mentioned, Christian von Tippelskirch, who, though non-disabled, brought an amazing depth of understanding and perspective to the endeavor. So we've worked collaboratively on this for a number of years. Jo Reed: How many years in the making was it? Simi Linton: Oh, how many gray hairs do I have? It was probably seven years in the making. And it's out now. We have a wonderful distributor, Kino Lorber, and we're doing screenings all over the country. And we have a screening of our film, Invitation to Dance, on Friday, July 24th at 7:00 p.m. at the Atrium in Lincoln Center. It starts at seven, but we're urging people to come early. And it's going to be followed by a dance party with a really spectacular D.J. So we're very excited about that event. Jo Reed: That's sort of money in the bank, don't you think? Simi Linton: Yeah. Jo Reed: In terms of disabled people who are entering the arts, do you see a growth in that? Simi Linton: Yes, I definitely see a growth in the number of young people, certainly a huge growth in the number of young people that are interested in the arts, and then a smaller number who actually are able to pursue those careers. I mean, conservatories of dance, for instance, or theater, are historically discriminatory, and disabled actors and performers of all kinds have war stories of going for auditions for a theater program, or a dance program, and running up against all kinds of obstacles, whether there are physical barriers for people with mobility impairments or a theater program refusing to recognize a disabled person as being a viable actor or dancer. That is very slowly changing. I think there's awareness there. I think that, unfortunately, those who teach in those kinds of programs, haven't had the kind of training that would help their classes be more inclusive and available to people coming up. The Departments of Education, well, in New York, have some programs that are available to disabled kids in increasing numbers. And I think with increased integration in the schools, both at the elementary, high school, and in college level, and graduate school, the increased presence of disabled people in those settings is putting a demand on all kinds of programming to be inclusive and to be suitable for disabled kids. I mean, it's not just that you stick a disabled kid in a General Ed classroom, and expect that that kid, you know, it's up to that kid to keep up. That's what happens a lot, but that's not fair. Teachers need to be trained to teach inclusive classrooms that reach kids, all kids that are in their rooms. And the same is true for arts education. So there's a great deal of work to be done, and it's an exciting time. The Dance NYC convening last week was a very optimistic moment. And then just earlier this week, there was a program called Lights, Camera, Access, which was designed for people in theater, film and television, and also other media platforms, looking at employment in front of the camera, behind the camera, as writers, as directors, as actors, and so forth. So there's a number of things going on that mark this moment as a potential transformative moment. We'll see what happens, but that's what it feels like right now. Jo Reed: Where do you think the next challenge is for disability in the arts? What's your eye on? Simi Linton: Well, I am, you know, have been thinking a lot, a lot, a lot about dance, and my work with Dance NYC has invigorated that focus. And I think it's really looking at the training situation of disabled artists. And looking at presenters, you know, those who run venues, to see our work as viable, and to understand the audience, and to understand that there's an audience for this work. And by that, I don't mean just people from the disability community, although, we are a substantial lot, too. But also that there's an audience for this work, and that it is interesting, that it's beautiful that it's provocative, that it's funny, that it's sad, that it's poignant, that it's hysterical. That it embodies all the best features of good art. Jo Reed: Simi Linton, thank you so much. I appreciate it. Thank you for everything you do. We all appreciate that. Simi Linton: Oh, thank you. Jo Reed: That is Simi Linton, a leading advocate for disability and the arts. You can get information about her documentary at invitationtodancedoc.com. You've been listening to Art Works produced at the National Endowment for the Arts. To find out how art works in communities across the country, keep checking the Art Works blog, or follow us @NEAarts on Twitter. For the National Endowment for the Arts, I'm Josephine Reed. Thanks for listening. Transcript available shortly.