Written on the Body: Full Transcript
April 18, 2006
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Good evening, Ladies and Gentleman. I would like to welcome everyone here. My name is Tari Stratton. I work for the Dramatists Guild of America, one of the co-sponsors of this event. We are all happy to have you here with us tonight. We are also very glad to have with us the author, Horton Foote. Not only is he a wonderful person, he is a wonderful writer, who has won just about every award a writer can win. He’s a hero of mine, a hero to a lot of people I know. Please thank him, with me, for coming here tonight.
I just want to say I’m having a wonderful time, and I’m so glad you asked me to be here.
Fellow writers—playwrights, screenwriters, TV writers, writers of news, and nonfiction—welcome, and thank you for coming. My name is Horton Foote and tonight we’re going to be talking about disability. We hope to spark a dialogue, to raise questions, and leave us all thinking—and perhaps writing—a little differently.
In fact, we writers have always written about disability. There’s a great tradition of tackling all kinds of disadvantage—social, physical, psychological, in order to explore the human condition. Boo Radley, in Harper Lee’s To Kill a Mockingbird, which I adapted for the screen, was one such outcast, as was Lenny, in John Steinbeck’s Of Mice and Men, which I also adapted. Such characters deepen our understanding of ourselves and our humanity. And they make for extraordinary storytelling. There was another character in To Kill a Mockingbird, Tom Robinson, a black man who was on trial. His disability helped to turn around the case against him, to ensure his innocence of the crime.
As writers, one thing we share is a desire for the truth. And so when we do give voice to those who are marginalized, we must take care that the stories we write are authentic. And that we are challenged to depict the inner reality—rather than merely the surface reality—of disability in America.
We are at an exciting time, when the stories of disabled people are increasingly becoming part of the social landscape. They share a world of social and political challenges that might very well astonish you. And their stories are just begging to be told. With that in mind, I welcome you to Written on the Body: A Conversation about Disability.
I’m Warren Leight. I’m nervous enough following Horton Foote and claiming to be a writer. I want to thank all of you for coming. I’d like to ask the members of the panel to join me.
What we all have in common is that we’re all writers. And I think everyone in the room understands how lousy it is to be a writer most days. [Laughter] So on the bright side, we all have a reason to procrastinate tonight.
The genesis for this evening, for me anyway, was an event in November at the Public Theater, a very moving event. It was a symposium on disability; I believe it was called, Broadening Diversity. I walked into a room filled with more disabled people in one room than I was used to being in a room with. I felt a little awkward and I decided to just play through that. And I listened in on, and participated in, a fascinating dialogue about how the disabled are depicted and are not depicted in the things we write and the things we see. And what struck me about the evening was that it was a room full of actors, artistic directors, casting directors, theatre bookers. There weren’t enough writers there. And I thought, in a sense, that the room was preaching to a choir. Most of the people had heard these stories before; most writers in the room were part of the disability community. I thought the next step would be to extend that discussion. I talked to Lynn, who was on that panel, and to John Belluso, who can’t be here tonight, about how to go about organizing an evening like this. And three months later, we’re here. We don’t have the mayor tonight, but better than the mayor, I think [Laughter] is Matthew Sapolin, the Executive Director of the Mayor’s Office for People with Disabilities. He’s just gotten off a plane from Puerto Rico.
Thank you, Warren, for that lovely introduction. I want to start first, on behalf of our mayor Michael Bloomberg—which it sounds like Warren did not vote for [Laughter]—but on behalf of his honor, Mayor Michael Bloomberg, I want to commend all those associated with arranging this event, for those who have dedicated themselves to coming tonight, to expand their exposure to this wonderful topic, and to be inclusive in their professional endeavors.
First, I know Sharon Jensen from my first four years with the Bloomberg administration, and this, I believe, is her fourth partnership to advance placement opportunities, creative opportunities, in front of and behind cameras, for people with disabilities. And so, to Sharon and her team, and to Warren and Tom, and to the associations: the Non-Traditional Casting Project, the Writers Guild [of America East], the Dramatists Guild, and New Dramatists—you four have demonstrated that this can be done, that it’s an ongoing dialogue, and we’re not going to solve these issues overnight. But, it’s an ongoing dialogue—and Warren and I spoke about this earlier today—where we can get more people in this room next year who haven’t heard this conversation. Or that you can talk about this conversation in the workplace. The more we can get to, the better. And Sharon’s mission is, everyday, one step closer to success.
As my office was established in 1973 to ensure that the people with disabilities in our city had an active voice in the development of New York City government programs and services, we now know that artists with disabilities have a voice in the Writers Guild [of America East], in the Dramatists Guild, in New Dramatists, as well as the Non-Traditional Casting Project. And it’s a loud voice, and today it’s represented here by all of you.
Let me review—in introducing tonight’s program alongside Warren—some of the questions I had about, “How do people with disabilities get included in film, in television productions, and other creative and expressive arts?” Twenty percent of the United States of America, nearly 56 million people, are people with disabilities. The Mayor believes that all of our institutions, and all of our activities, should mirror that.
When you write scenes, you’re careful to include diverse background actors, diverse leading actors, and characters of all types, of all persuasions—rich, poor, ethnic varieties, and religious backgrounds. But, so often in the diversity conversation, the disability world is left out. The disabled form the largest minority [in America]. And, it’s the only minority that any of us, unfortunately, are welcome to join at any point. You don’t need to be born into it. And so, when speaking with Warren, we talked about how to get writers to do more of this, to include more scenes that incorporate actors with disabilities.
And what I think you will gain from tonight’s dialogue, and what I offer you through the Mayor’s Office for People with Disabilities is a resource—through dialogue and through real contacts in the community—to give you, the writer, a sense of comfort.
In talking with my friend Daryl “Chill” Mitchell over here to my right, we explored that, you know, it doesn’t offend me if you say, “Hey Matt, did you see the episode of Law & Order: Criminal Intent?” And I say, “Yes I did, and Warren and his crew did a great job, as they always do, of incorporating actors with disabilities.” And it doesn’t offend Daryl or many wheelchair users if you depict them in a scene with language about walking through Central Park. And so, it’s going to offend some people, but overall, I think you can get a sense of comfort.
What is appropriate? Several years ago, I believe about two years ago, Sharon spearheaded another event, where we tried to expose the creative side of the industry to some of the things that they may not have been aware of: Technology. A lot of you may not know how a person who uses a wheelchair, or a person who is blind or a person who is Deaf or hard of hearing gets through the normal routine of a day. Remember, we’re more like you than we’re different. And so, we modify a few things. But, if you don’t live with us, or watch us, or expose yourself to us and our stories, you won’t be able to include us, and believe me, as Mr. Foote pointed out—and what a tremendous honor and privilege to be in the same room with such a talented and storied writer—some of the greatest stories in our history that will outlive these conversations are the root of this conversation. People with disabilities have always been at the center of conflict. Whether it be Helen Keller in The Miracle Worker, or some other depiction, your portrayals of us—whether accurate, inaccurate, absolutely inappropriate, or absolutely appropriate—are what the millions of people who watch what you do will take away from my life, from Daryl’s life, and from any other person in this room with a disability. So, you have the opportunity to portray us and include us and our stories and people like us in your scenes. I think it’s a challenge; I’m not saying it’s easy. But I know all of you are up to that challenge. So, I think there are a lot of things you’re going to hear here tonight that will hopefully improve this conversation.
I extend the Mayor’s Office for People with Disabilities to all of you as a resource, to ask any disability-related question you may wish to. I want to again, on behalf of the Mayor, welcome you to this event and thank the organizers. I think Warren and Tom have set a great example, as to how you all, who are really are in the trenches putting pen to paper, can make a difference by taking key leadership roles. We know that these gentlemen have already included people with disabilities in their scenes, over and over again, with dignity and with appropriateness. Now, we want to see, over the next several years, more leadership step forward. We can all deliver different things. I look forward to being part of that partnership, and I hope to be standing here next year, in the wonderful HBO house, to do this again.
Thank you very much, Matthew. One of the things I’m most happy about tonight is we have writers from almost every genre that we could think of in New York. There are magazine writers, soap opera writers, animation writers, news writers, documentary filmmakers. There are screenwriters, murder writers. There are a number of murder writers in the room, so watch yourselves! [Laughter]
When I went to that seminar in November, I was struck by how often people said they were tired of writers using disabled characters as a metaphor. And I thought, “Oh, I’ve done that.” And how tired they were of depicting disabled people as somehow always more noble and always inspiring, and I thought “Yeah, yeah, OK.” So, it’s a more complicated picture. Because we’re all human, nothing is as simple as we might think, as writers. And we’ll be getting to that in a minute.
Before we begin we’re going to talk a little bit about the late playwright, John Belluso. In some ways, he’s with us tonight. Sharon Jensen, who has been tireless in putting this evening together, will talk a little bit about John.
Thank you very much. I do feel that John is with us tonight. John was key in planning the event we did at the Public Theater last November. He was key to this event. We worked together closely for several years. And I believe that he is very much with us. All along I’ve said, “John, you’ve got to help us.”
I have a message from John Belluso’s mother, Sally Belluso, and I am glad that also with us tonight are Patrick Herold and Thomas Pearson, who were John’s agents. They were so close to John and worked so hard to make sure his work would be done all over the country. They are tireless in their efforts to continue to see that work continue to be done. So, thank you both for being here tonight. And now I bring you a message from Sally Belluso, John’s mother: “On behalf of John’s family, we wish we could be here tonight. I know that John’s spirit of advocacy for those who are disabled will continue forever through his plays and the work that this evening represents.”
I want to introduce to you the next person who will be talking about John, Victoria Lewis. Vicki started a theatre company at the Mark Taper Forum, one of the satellite programs at the Mark Taper Forum, called Other Voices, in 1982. She set it up to create training and employment opportunities specifically for disabled people in the theatre and to change representations of the disabled figure on the stage and in the media. Vicki ran this program—as an Amazon woman—from 1982 until 1997 when John came on as acting director. He came on as co-artistic director in 1998. In 2002, Vicki passed the mantle on to John Belluso completely. He remained artistic director until his death, this last February. So it is with great pleasure that I introduce you to Victoria Lewis.
But first, we have a wonderful clip to show you that John wrote for HBO’s Deadwood. It’s Episode 5, from Season 1. For those of you who are low-vision or blind in the audience, I would like to describe the scene. It’s the funeral of Wild Bill Hickok. A preacher stands on a hillside talking to an assemblage of people in the Wild West. The wind is blowing, and the sun is shining. The guys are unshaven and the women are in their prettiest Sunday dress.
The following video clip was approved for use at this
event by HBO.
“The Trial of Jack McCall”
Written by John Belluso
All rights reserved, Copyright 2004
Ext. The Graveyard—Day
The grave’s been dug. The coffin’s beside it. Smith preaches to the assembled …
Smith: Mr. Hickok will lie beside two brothers. One likely killed, the other he killed for certain, and he’s been killed now in turn. So much blood, and on the battlefield of the Brother’s War, I saw more blood than this, and asked then after the purpose and did not know, and don’t know the purpose now, but know now to testify that, not knowing, I believe. St. Paul tells us, “By one Spirit are we all baptized into one body, whether we be Jews or Gentiles, bond or free, and been all made to drink into one Spirit. For the body is not one member but many.” He tells us, “The eye cannot say unto the hand, I have no need of thee; nor again the head to the feet, I have no need of you. Nay, much more those members of the body which seem to be more feeble, and those members of the body which we think to be less honorable, all are necessary.” He says that, “There should be no schism in the body, but that the members should have the same care. One to another, and whether one member suffer, all the members suffer with it.” I believe in God’s purpose, not knowing it. I ask Him, moving in me, to allow me to see His will. I ask Him, moving in others, to allow them to see it.
His eyes are fixed on Bullock. Then—
Smith (cont’d): Let us sing, “How Firm a Foundation” as Mr. Hickok is laid to rest.
We chose this because we feel that it absolutely at its core represents what John was about. And what his message was, and what his advocacy was about. And it’s now my very great pleasure to introduce Victoria Lewis.
I talked to John Belluso about this script for Deadwood. The scene at the funeral was his, and he was very proud of it. At John’s own memorial in New York, and then again in Los Angeles, there were an enormous number of people present who felt connected to John, who claimed John as dear to them. John had membership in many communities. He moved across boundaries of class and race, sophistication and deprivation, disabled, and nondisabled. He had a fabulous personality. He was able to challenge people with radical ideas about health care, foreign policy, sexuality, and human and civil rights; and still get an invitation to dinner and drinks. [Laughter] And his talent and intelligence kept those invitations, the grants, the fellowships, the staff-writing positions coming. He had great success as a writer, and surely more was to come when he died at the very young age of 36.
Well, it’s exciting to be in a group of storytellers, people whose goals are not that different from John’s. I would like to share with you, as storytellers, what John hoped to accomplish with his writing.
The one story John was dead set against is: the triumph of the exceptional individual over a personal tragedy. This was not John’s story—because this story denied the economic, social, and historical conditions of disabled people across time.
See, this is what I mean. I wish John were here because he would make this sound exciting and artistically fascinating, which it is. There are others here for whom the question of depiction has been similarly critical to their work. I read an interview with Warren soon after Side Mancame out, and he talked about the marginalization of the jazz world. And he said, “I can’t stand it, year after year, Hollywood and New York produce almost nothing about jazz musicians. The stuff I saw as a kid was trite. The closest TV ever came to depicting a jazz musician was Maynard G. Krebs on Dobie Gillis.” And if any of you have seen or read Warren’s play, you know that it was light years away Oh, pun! from Dobie; it was filled with darkness, humor, self destruction, and devotion to music. The same can be said of Horton Foote’s body of work grounded in Texas, and Diana Son’s Stop Kiss, a story of falling in love in New York City, that could never be confused with Friends. [Laughter]
John’s stories are filled with the texture of a life lived with a disability. John and I supposedly had something in common since I was disabled. And it’s true, we were both on telethons. John, who was misdiagnosed early on as having muscular dystrophy, actually was embraced by a slightly inebriated Jerry Lewis on a telethon, [Laughter] and I was embraced by a slightly inebriated cowboy, I think, at 3:00 a.m. on Dallas’ local version of the March of Dimes telethon. And he was making some rather inappropriate comments about my yellow dress. But we had more profound things in common, namely an analysis of disability as connected to larger social issues, and the relationship of disability to poverty.
In Pyretown, what John called his “HMO romance,” there’s a couple. (There’s always a couple in John’s plays.) The disabled Harry is trying to coach his new friend Lois, on how to negotiate a phone interview with her insurance company. She’s on welfare, she’s on the worst of HMOs. He’s pushing too hard, and Lois says: “I don’t need to be lectured, Harry, you’re not a expert on everything.” And Harry responds, “No I’m not, but I’m crippled, I’m poor, and I live in America, so I am an expert on this.”
But John’s writing—and I want to say this to all of the writers in the room—did not solely come from his own personal experience. In fact, he did lots of research for every play. Believe it or not, not every disabled person knows every other disabled person [Laughter] nor are they comfortable or knowledgeable about the wide range of differences that constitute
the so-called “disability community.” So, he researched not just historical plays like The Body of Bourne about 19th-century radical thinker Randolph Bourne, but also for Gretty Goodtime where he investigating the beginnings of the independent living movement in California and the contemporary controversies surrounding the issue of assisted suicide. In Pyretown, he was working from his working class roots in Rhode Island, but he had to get the HMO stuff down because he was making a big attack on that industry. He had to be careful. John believed that there were many stories from the experience of disability that would be good to tell everybody.
So, research and listening—if you don’t have the research and listening, you can end up with some pretty clichéd plots. Not to scare you, but once upon a time, there was a television sitcom that wanted to do a show about disability, and they insisted that they would not talk to any disability advocates. They didn’t want any of that, you know, “p.c. stuff” coming in. They ended up with a plot that is the most clichéd of all disabled romance stories, in which the disabled girl, in order to “be OK,” got up out of her wheelchair, put on her prosthetic legs, and danced with the star of the show.
As Matthew said, disability is a community that anybody can join, if you live long enough, and watching the clip from John, I hope I can say what I think was so important to him. The idea that the “survival of the fittest” means the “survival of the strongest” was something that he highly disagreed with. In fact, he has a long monologue about earthworms in Pyretown, which I highly recommend.
Tony Soprano started to get some disability consciousness recently, during his stay in the hospital. I don’t mean the stomach wound, and all the medical stuff; I mean his encounter with the insurance representative who wants him up and out of the hospital because he’s costing a lot of money. He’s costing too much money every day. Now of course, first Tony hits on this woman because she’s blonde and buxom, but when he figures out what she’s up to, the next time she comes in the room, he says, “Ah, the bird of prey,” Tony’s comment on HMO’s. The episode continues to explore disability issues as Tony struggles to reassert his “Alpha male,” status which has been threatened by his debilitating injuries. He beats up a strapping young man, he opens his stomach wound, because he’s still buying into The Lone Ranger version of what we should be doing, what men should be doing, what we, as a country, should be doing. That’s the big story that John was telling: that rugged individualism, The Lone Ranger way, is not the way to survive as individuals or as a nation.
This was read at John’s memorial in New York, it’s part of a speech that was cut from his play Pyretown. It’s actually spoken by a newly recruited HMO doctor: “There are slivers of something inside of our bodies, fragile strings inside of us. Slivers, thin, like the most delicate of veins. They are contained inside each body, but they also break outward, connecting themselves to other bodies. Tight, taut, radiant threads of interconnection. I realize that this is not the best time in the world to be a romantic. But I do believe in these connections. I truly believe these slivers exist, and I see them. They reveal themselves in small moments, small exchanges.”
Thank you. I would now like to introduce Simi Linton, author of Claiming Disability and My Body Politic.
Thank you, Vicki. My job tonight is to provide an introduction to some of the new ideas about disability that can inform theatre, film, and television. Before I begin a general overview, I’d like to share with you a news article that appeared in a number of papers last fall—something that captures a dilemma that all of us in this room are up against. “It was announced that Gary Sinise will serve as the national spokesman for the Disabled Veterans for Life Memorial Foundation. The actor played Vietnam vet “Lt. Dan” in the film, Forrest Gump. And the foundation is working to build a disabled veterans memorial in Washington, D.C. A spokesperson said, “His portrayal of a soldier who loses his legs in the Vietnam conflict brought home the terrible price that our men and women pay in the fight for our country’s freedom.”
If you have ever wondered whether disabled people have a real say in the matters that affect our lives—here is evidence of how people in authority view our authority. This is an alarming triumph of fantasy over authenticity. But don’t worry, we have assembled here some genuine disabled people—not a bunch of Hollywood types who play us in the movies. And a righteous group of cripples they are.
Now, for the bigger picture.
Disabled people are everywhere these days. On supermarket checkout lines, on the bus, in the classroom and on the stage. We are emerging from backward, segregated settings, and sheltered workshops, upping the ante on the demands for a truly inclusive society.
And we have come out, not with those brown, woolen, lap robes over our withered legs, nor dark glasses over our pale eyes, but in shorts and sandals, overalls and business suits, dressed for play and work—straightforward, unmasked, and unapologetic. We are, as Crosby, Stills and Nash told their Woodstock audience, letting our “freak flag fly.” That resonates with a certain demographic. [Laughter]
The disability rights movement fostered our emergence, and the public has greeted us sometimes enthusiastically, but more often our bids for integration and equity are met with reluctance or outright hostility. Once out, we have found each other and formed a coalition, a constituency, a community. Of the things I am going to say here, I am most eager to impress upon you the strength and cohesiveness of the disability community—our body politic. Writers of all stripes have set about recording this movement—what drives us, what shapes our experience, what we like, and what moves us. A lot of that writing has been organized in the academic field of disability studies. Vicki and I, and a number of us here today work in disability studies. Like
women’s studies, African-American studies, or queer studies—disability studies examines how the category “disability” and the group “disabled people” have been constructed—how social institutions, books, films, and so forth cement into place shopworn ideas and reinforce rigid social stratification. Disability studies also, and significantly, includes the vibrant self-explorations that are found in memoir, drama, and cultural expressions of various kinds. In this new brand of writing, and in theatre and film, we see a focus on what disabled people do with disability—how we use it, what it does to us and for us—not what we are able to do despite disability. What disability provides rather than what disability takes away. In addition, we are interested in what is ordinary and also what is extraordinary about disabled people’s lives. These new ways of thinking provide a point of entry for writers—a foundation for crafting characters and stories that build on these perspectives, that harness our creativity and adaptability and that expose the factors that determine our social positioning.
I’d like for a minute more to turn attention toward an even broader use of disability perspectives. Do you recall the news story a few years ago—the controversy about Casey Martin and the golf cart question? Martin, a professional golfer, has a mobility impairment that makes it difficult to walk. He petitioned the Professional Golfers Association for the right to ride a golf cart in pro tournaments. They turned him down, Martin took the case to court, and it was eventually deliberated in the Supreme Court. In that decision, Casey Martin prevailed. The most significant outcome of the whole debate, I think, is that the discussion came down to asking the question: “What is the game of golf?”—because some people said: “If he rides a cart, that is not golf.” What, then, I’d like to know, is golf and who has decided? The presence of disabled people in the wide variety of places we are showing up these days, calls into question such accepted ideas as golf. Similarly, a dancer in a sporty, lightweight wheelchair, demands that we ask the questions, “What is dance?” and “Who is a dancer?” Our job as writers is to ask the big questions. Who defines golf or dance, or citizenship, or equity? Who makes the rules and, significantly, whose interests do those rules serve? I will turn you over now to our esteemed panel. Thank you.
Thank you, Simi. For the next portion of the panel, we will talk amongst ourselves. And then we’ll open it up to questions and to a dialogue. We have here: Vicki, Lynn, Stephanie is the interpreter, David, Diana, and Emily. I’ll start with Lynn, but this is actually something I’d like each of you to answer:
How do each of you approach disability in your writing? We heard a little bit about how John did a lot of research—do you have a particular style?
I approach any character that I don’t have real personal experience with—and even when I do—by doing some research. For example, I decided to write a love story about a blind couple for a play. I had never had a relationship with a blind female in the years that I’d been blind. I’d been blind for some 12 years at that time, and the wife I met and fell in love with and married was sighted. So, the difficulties, lamentations, and differences that exist dealing in a relationship with somebody else who’s blind, I hadn’t had. But a couple of friends of mine who were blind had married blind women, and I pursued interviews with them. Specifically, I observed them in their living conditions, but then, since I was writing mainly from the male point of view, I took the men out and asked about this relationship—particularly if they made comparisons to their relationships with sighted women, and what the differences in the relationships were. And I found that there are some real differences, and a lot of issues that come up, they differed from one relationship to the other.
I think even those of us who supposedly are supposed to “know” what it’s about shouldn’t take it for granted that we do. We should get out there—everybody should get out there and with some degree of due diligence, research characters and their realities. I think part of what happens with writers, particularly when you’re dealing with disability, is you come up against questions of appropriateness and inappropriateness. “You shouldn’t ask that question”—even little children are told, “Shh! Don’t ask that.” If you see a disabled person you shouldn’t approach and ask them,“ What’s it like to be blind, what’s it look like?” The parent will snatch the child and drag them off, and the child will think it’s something they should never broach. I think even as adults—even as professionals—rather than ask the question, you either don’t write the character, or you make some assumptions that might end up putting something asinine on the screen.
David, do you want to comment on how your experience with disability has affected things?
Being deaf and coming from that perspective, having lived with other deaf people, the life that I’ve lived, going to school and being raised in a deaf environment—I certainly have a lot of deaf friends who were deaf raised in hearing families or have hearing partners unlike myself. But as for me, I don’t think I had to do a lot of research on the deafness issue, which I write about. It’s such a universal experience for me, and it’s actually very easy for me. I feel a strong sense of connection to the authenticity of the issue, and anytime I see deaf characters written by people who don’t have the knowledge, it’s evident; I can see what’s wrong with it immediately.
Diana, I’d like you to talk about that, because you come from a different point of view.
I think my presence here was John Belluso’s insightful idea. I wrote a play a few years ago called Stop Kiss, which is very much about two women who consider themselves straight, and one of them is new to New York—and they sort of surprise themselves by falling in love with each other, but they’re very nervous about it, and the first time they ever kiss each other is in public, and one of them is beaten very badly. The play is told in alternating time periods—present and past—and much of the present tense narrative is of this character Callie—whom we have seen is somebody who is very fearful of commitment. She learns to step up and when the physical state of Sarah is in question—she is in a coma—and when we last see her, she is partially paralyzed—and so Callie’s big moment is to be able to say to Sarah, who before she couldn’t even muster the courage to kiss, to say, “Choose me to take care of you.”
People often ask me about the structure of the play, the “before” and “after” time periods. They wonder, did I come up with that after I came up with the characters in the story? I realize I think about time very much through the perspective of “before” and “after” my mother had a devastating stroke, which left her paralyzed on half of her body, and unable to speak more than 10 or 20 words, the last 20 years of her life.
I did not grow up as a child with a disabled mother and become sensitized to those issues. I became aware of them as a teenager. And so, I think I ended up writing about disability without really realizing I was writing about disability.
I’m talking to your children, I’m talking to 2- to 5-year-olds and have been for the last 36 years as a writer on Sesame Street. And so I want to tell you what I feel is my mandate, and then I’ll tell you about how I come to that. It seems to me in talking to the next generation, and getting kids started off in a right direction, it behooves us to give them as much good, clear, and positive information about disability, and about different kinds of people, and different kinds of disabilities, just as we do with different ethnicities and races, and all the other kinds of diversity that we show on Sesame Street. We have segments on Sesame Street which actually deal straightforwardly with different kinds of disability. I’ve done stuff with Itzhak Perlman, Christopher Reeve, Linda Bove, which is some of the stuff I’m most proud of in my career.
Secondly, and perhaps this is just as important or maybe more important, is just the natural, comfortable inclusion of people in the community who just happen to be there, whose disability is not pointed to, is not flagged, is not made the central issue of any particular segment. They just are there because they are a part of the community, and as we all know, people with disabilities is America’s largest minority. This is a topic that comes up in our writers meetings over and over and over again. And I’ve had many frustrating discussions with filmmakers. We subcontract live-action film out to other producers and filmmakers on the outside, and you have to keep reminding them, “This is America’s largest minority, folks, and we’re almost twice as many as African Americans. You wouldn’t think of making a live-action film with a bunch of kids and not use any African Americans.” It’s crazy. They wouldn’t think of doing that. Well, leaving out people with disabilities is just as crazy, or perhaps more so, because we’re numerous. So, I can’t tell you how many memos I’ve written, how many phone calls I’ve made to remind filmmakers, that any film with seven or more kids in it needs to have a kid with a disability. Just by the numbers, that’s all. Just in there, as we are, in the ordinary community by the numbers.
So what we’re doing is, we’re not only giving out information and showing kids included, we’re sending a message of entitlement and validation, to the kids in the audience themselves who have disabilities, to their siblings—their siblings have such a tough time in school—and we want to make it OK to have a brother or a sister with a disability, and get that understanding out to the rest of the community. And then to the great unwashed, to all the people who have never experienced this in their own personal lives, or still have some sense of discomfort about it. We’ll tell all the rest of that audience that this is OK, this is part of our community, part of our schools, kids are not being institutionalized anymore. They’re in the community, they’re in the schools, they’re going to be your kid’s playmates and classmates, and they’re entitled to be there. This is the message we’re trying to send out all the time.
I started with The Little Theater of the Deaf in 1970, which was Season Two of Sesame Street. I was a brand new writer, and I had just come onboard. And I fell in love with The Little Theater of the Deaf, and I fell in love with a lot of the people who were actors in the company, and I went to classes and learned how to sign. And my husband and I said, “Hey, let’s have a kid and then maybe we’ll adopt a second kid, who is Deaf. And wouldn’t that be interesting and challenging and fun.” You know, we were thinking about that. And then, we went ahead and had our kid and what do you know? The kid had Down syndrome. So we sort of had our kid with a disability first, instead of second At that point, as a writer, when I watched television, I experienced a visceral feeling of total exclusion. I watched television as a new mother and never saw myself, and never saw my child, and never saw anybody in a commercial, or in a program who reflected my family or my experience. It was as if we had fallen off the end of the earth. We don’t wash our clothes, we don’t eat breakfast cereal, we don’t buy mayonnaise. We were totally, totally invisible. And I experienced this—literally—in the pit of my stomach. There were things on television that brought me to tears. Not because they were so terrible, but because everybody on TV was just so perfect. I had a sudden awareness—this must be what African Americans felt like years ago when they were never seen as fully entitled members of the community, participants, and consumers.
We haven’t made those steps in disability yet. One of the problems is that the disability community is still fragmented. As America’s largest minority, if we could speak with one voice, if we could get together and speak with one voice, we could make anything happen in this country that we wanted to. We could change legislation, we could change services. We could change everything. And so, you know, part of my personal advocacy is to try. I had a bumper sticker that said once, “Disabled Americans Unite” (I hated to give away that car when it broke down, because I didn’t want to lose the bumper sticker.). That’s how I come to this subject and what I feel my mandate is.
We get the sense that the writers on this panel are aware and concerned about these issues. But how’s the rest of the culture doing right now, in depicting disability? I think analogies to other minorities are sometimes helpful. I recently worked with an Asian acting company and I had a kid come up to me who said, “Thank you for this part; it’s the first time in three years I wasn’t asked to play a delivery boy or a gang member.” And that’s where that acting community is now. There is still this ghettoization in America. But I wondered [what] your sense [is] of what we’re doing. What’s done right, what’s done wrong? Positive and negative?
Well I have to tell a story similar to the Asian-American theatre story Warren told. We were working on a play based on disabled history. Actor [Shari Weiser], a woman of short stature, was playing various characters. Shari told me that in her 10 years as a professional actor she had never played a human being. She had always been an animal. She was in [Jim] Henson’s Labyrinth—remember that? Shari went on to do some TV work. And she got a role on ER—and this is nothing against ER, it sidles around disability—but she was given the role of a pregnant little person. Her character was really scared that she was going to have a little person. And the doctor, the able-bodied doctor, had to help to assure her. And that’s a very normal scenario for TV: The nondisabled person is also helping the disabled person to come to terms with this terrible thing, and to get the right attitude, to stop feeling sorry for themselves, he gives them this slap in the face. Shari actually stopped acting after that experience. She said, “No one has asked me to play something remotely related to who I am.”
[Howie Seago], the actor, left Los Angeles, part of the reason being, as I understood it, because he said there were no roles for him. Peter Sellars used him in Ajax. And he was an extraordinary actor. Now that’s the casting issue, the fact that these roles are few and far between. But I think the culture’s in a fix about machoism and cowboyism, and about taking over the world. I find the whole atmosphere that we’re living in right now, very, very disturbing. The message of disability is that the weakest, the weak, might have something to tell us; that it is dependency that really defines us as humans. It is by being dependent that we survive, not by being cowboys. That’s the great story I think disability has to tell, and that’s the story I encourage you to tell. There’s this one thing I forgot to tell. And I just want to tell this to all of you who aren’t disabled writers, about the other side “being so good.” I was with a group of disabled activists, people whose lives were devoted to changing the world, who worked everyday changing laws, changing the physical conditions for the disabled, and I was teaching them an acting workshop, and we were doing a storytelling exercise. And you know that storytelling exercise where somebody starts a story and then you point at somebody and they have to tell the next part of the story, and then somebody else has to take up the next part of the story? In this story, I started out with somebody having a car accident and becoming disabled. And by the end, by the time we got to the end of the story, this person had been cured three times. [Laughter]. That just speaks to how deeply these narratives are entrenched in fiction, and how they fulfill dramatic structure for us. And how hard they are to break. And artists can think of ways to break these narratives.
Journalism really could do something different. The AP Stylebooks have had the language down since 1982, about what is the correct way to refer to disabled people. It’s not rocket science! It’s “disabled,” it’s “disability,” it’s “wheelchair-using,” it’s not “wheelchair-bound.” Get on with it! John Lahr, who I think is one of the greatest theatre critics in the world, is still using “wheelchair-bound.” So that’s discouraging. When these big disabled stories come up, Terri Schiavo and all of these right-to-die stories, which are deep at the heart of what disability advocates are thinking about these days, there are no disabled experts called upon. All of these people out in the field, all sorts of different experts in the field, are never called upon. You would never not see a major Civil Rights expert talking about what’s going on around immigration. You would never have talking heads without seeing some of them being Latinos—professors, advocates.
Well, Fox News would never.
I wonder, David, if I could get a sense of what depictions piss you off? And which ones you’re more comfortable with? You said you can smell a fake a mile away.
When I see a deaf character in the movies or in whatever medium, it’s always the stereotype. They fall in love with a hearing person and the hearing person has to end up helping them. Or they’re alone in a world of hearing people. There’s the constant struggle with a hearing world that in general won’t accommodate them. This is not really how we live our lives on a daily basis; we are productive. And I don’t mean to be talking in clichés myself. But the concern I guess I have is with the authenticity of deafness, what it means, how we live our lives. We have boring lives also. [Laughter] Many of us are boring. We are an invisible disability. But it’s a struggle to find ways to show the deaf experience, yet glamorize it, so that it’s marketable, so that it’s appealing to producers. It’s a real struggle to mix this marketability and the authenticity of the product. Another thing I want to mention as well. Roles get cast here and there that may not be authentic. But because there’s a fear among actors that they might not get another role, another opportunity, even a deaf actor will play a non-authentic character; the roles are so few and far between that they’re grateful to get them. So that’s a struggle as well. I mean, you know, it’s work! We work with a director to make sure the storylines get as authentic as possible.
Lynn has mentioned to me that you [David Kurs] are sometimes upset that the disabled tend to be portrayed alone.
David made mention of that, with regard to Deaf culture. Most of the time, a disabled person is presented as this sole person in a sea of healthy, normal, able-bodied people. A blind person alone in a sighted world is a typical representation, and it’s seldom like that. You may see a blind person alone, but who knows what’s at home, or the network of friends and people that they’ve grown up with, or that they socialize with? I think it’s absurd to show blind or disabled people—and I speak particularly about the blind because of my own experience coming into this particular world, and this particular community, and there is community among blind folks. I think it’s as absurd to present blind people in that isolated way, as absurd as it would be to always see a black person as the only black person in a film, or in a screenplay, or in the world, that they don’t have a culture they draw from—a home base—or that they don’t seek out people of like experience and background to commiserate with at the end of their day. I love to fall into a conversation with another blind person or fall into just an outing or activity with a blind or visually impaired friend for the sake of not having to explain “how I do something,” or “how we do something,” or even have the offer of assistance given to us in some environment, or even to be tempted to ask for assistance. Say, well, “Let’s go off and do this thing together, and we won’t invite any sighted people ‘cause we don’t want no help!” (Laughter). Sometimes we want to just be in an environment with folks who are of like mind and body, and just “be”… and you never see that [onstage or in film].
EMILY PERL KINGSLEY::
Sesame Street, we’ve tried to have at least one kid with a disability on the street, technically, all the time. We have had some occasions to show groups of kids, for example, a couple of kids walking down the street signing to each other, as an indication that there are people who communicate with each other in this way. And usually, if something like that happens, we’ll take the time to explain it, because we want the kids who are watching in the audience at home to understand as much as they can; we can’t always assume they will by themselves take the message we want them to. So if, for example, there are two kids signing to each other, somebody might approach this group and find that they couldn’t communicate as easily as these other two, and then it would be explained to them that these two children are signing to each other because they’re both Deaf and this is the way they communicate with each other, and so, why don’t we learn how to say “Hello.” So we try not to isolate people as much as we can. The biggest job we have is to make sure there is visibility, that there is a wide range of different kinds of disabilities. One of the problems is that on television, it seems as though “disability equals wheelchair.” People think, “We’ll stick a wheelchair user in as an extra and then we’ve done our job,” without giving any thought to the wide range of possibilities, so Sesame Street has tried to have kids who use arm braces, and kids who are reading Braille books.
One of the beautiful things I can report to you, is that now, in every Elmo’s World script, there’s a montage in the beginning, and there’s a directive to the filmmaker: “Please make sure you include children with disabilities.” So we’re trying very hard for this not to fall through the cracks anymore. And if I have a job to do, it’s to make sure that this is not just lip service. And all of the filmmakers have my phone number; I’m always on tap for them, if they’re looking for kids, and I plug them into support groups and connect them with parent groups, and families. I’ve sent all kinds of kids to them. So every year, we have casting sessions where they call me up and they say, “Well, we need a new bunch of kids with Down syndrome,” and so I work as a part-time casting director, on top of everything else! But this is so important that if it doesn’t get done, it doesn’t get done. So it’s necessary and I don’t think there’s any show in the history of television that has as comfortably, and as with as much frequency, included in a nice, easy, comfortable way, individuals with disabilities as Sesame Street has over the last 37 years.
I think that’s exactly where it has to start with everybody. People have to feel free to include disability anywhere, at any time, and not necessarily feel as if you have to add a gang of blind folks. [Laughter] I think the Sesame Street example is exactly what I think has to be spread around just so folks will know, and it doesn’t have to be about the character with the disability at all. As a performer with a disability, I’d really love for writers to create these parts, and to call for the part to be disabled in whichever way, form, or fashion; because if you don’t write it, they don’t think about it.
EMILY PERL KINGSLEY:
When I receive catalogs in the mail, I do a disability check. Just, you know, as a consumer, as a parent. If I get something from Bloomingdale’s, or from whatever it is, I flip through the pages to see if they’ve used any models with disabilities in the photographs. And then I write a letter. I’ve got a drawer full, literally. It’s a form letter: “President, Bloomingdale’s: I am not buying anything from your catalogue and here’s why: You’ve left out America’s largest minority in the photographs in your catalogue.” I’ve done this hundreds of times. And sometimes I get letters back where people say, “We don’t think it’s right to exploit the misfortunes of others in order to sell our product.” [Laughter] Other people have written back and said, “Oh, you’ve pointed out something very interesting, and we will take steps to correct that.” Your advocacy has to extend into every facet of your life. I do this with magazines. Sesame Street magazine has made great strides in this direction. I don’t think there’s a single issue of Sesame Street that doesn’t have some aspect of disability in it, unless the entire issue is about one of the puppets! In any case where it’s possible, they have pursued inclusion and I’m pleased to see that.
How do you know the person is not deaf, in the catalog? We don’t know!
EMILY PERL KINGSLEY:
Sometimes we do.
Well, hearing aids and that sort of thing. It’s an important issue too. Putting deaf kids on the street, that’s an important thing too.
EMILY PERL KINGSLEY:
I don’t know about you, but I have a child with Down syndrome, and I am happy to see a wheelchair, or crutches, or arm braces. Depiction of anything helps all of us. There’s still a way to go but any step in the right direction helps all of us.
Yes, I do agree with you. I grew up watching Linda Bove. And it was so important to me. I remember thinking they put her on the show because it showed how disabled people function in the regular world. And I watch disabled people wherever they appear. But I get a sense of tokenism. It needs to be there on a token level, as well as on a meaningful level, because sometimes it’s very evident that they don’t know what to do with these people once they’re on the show.
How do nondisabled writers write authentically about disability?
I mentioned earlier that the first thing is to drop any apprehension about asking questions. Spend time researching characters. I’ve consulted on a couple of projects, most recently Blind Justice. I was the technical consultant on that. And I was technical consultant to the actor Rutger Hauer on Blind Fury, and I taught him how to shave eyebrows with his sword.[Laughter] A friend of mine, Dan Murphy, in Los Angeles is working together with me, and some other performers and writers with disabilities, to provide free consultation to any writer who wants to write a disabled character, or who has a question about something that’s simple and easy enough to answer. The deal is, folks need to be able to ask questions and not feel like they have to hire on a full-on consultant just to get a couple basic ideas cleared up. This goal is to provide that, and hopefully, eventually, it will become kind of a non-profit resource—like the Non-Traditional Casting [Project], and the Media Access Office in L.A. Just as they provide links to performers with disabilities, we’d like to provide links to consultants with disabilities.
I feel like I would be disserving John, and what’s been going on in the last 30 years in our culture, if I didn’t say that the best writing comes with the deepest performance. You know, there are a lot of memoirs out there right now. Those are the things that I would say to read. If anyone asks me, “How do I make my acting class accessible?” I say, “Go read a book on disability rights. Then you’ll get a new way of thinking.” Here’s a story. August Wilson did an interview with Bill Moyers. He was talking to Bill Moyers about one of the Pulitzers he’d won, and Wilson was saying, “I write in black and white. I write for a black community.” And Bill Moyers said, “You’re writing about my family.” I think that really good writing comes out of experience.
People who are in the disability community talk about Passion Fish. You see that one? It’s one of those classic, whiny disabled person meets wonderful nondisabled person narratives. But there’s this one tiny segment where the protagonist finally gets the inspiration to go on a boat ride. And we see her on the shore. Then the next time we see her, she’s in the boat. How did she get into the boat? That’s what I find interesting. And I think that is my answer. You really want to know how to do it? Then really do it. You want to write a really good series about life on the streets? You really get in there and really understand what’s going on. And then you’re an artist, but you’ve fed on experience. It adds huge amounts of texture.
EMILY PERL KINGSLEY:
One thing that is obviously crucial: The message also has to get out to casting people that people with disabilities can be ordinary. They can be the lawyers, they can be the judges, they can be the people in the scenes who are not involved with disability issues. They can be just plain members of the community. Maybe this is just a matter of step one and step two, and we haven’t quite gotten past step one. But in addition to doing realistic and in-depth portrayals of disability issues, we’ve got to get the people with disabilities out there just in the regular community, as they are in real life.
Playwrights have some control. As a screenwriter, you have no control. John Belluso insisted disabled actors be cast in his roles.
But not always, there were times it didn’t work out. John talked about the amount of time and rehearsals. He always backed off when it became impossible.
For those of us in TV with some control over writing, I can say that if you write a disabled role, it might be cut. If it’s a heavy week. But I would encourage you to keep writing the roles. Now it’s time to ask
Hi, I’m Richard Willis, Jr. Writer and producer. I’m a big fan of Daryl’s from before—and now. And by the way, he’s great in Inside Man, and they never mentioned his wheelchair. I have the privilege now of being in the process of creating a new series for FOX. That is happening as we speak. I want to preface my question by saying that it’s interesting that you mention about August Wilson. As a person who has spent a great deal of time fighting for roles for blacks, and black characters, as a person who grew up in the South in a home with a grandmother who had amputated legs, it never occurred to me until tonight to write a disabled character. So, I really am sort of shocked at myself. It just never occurred to me. At all. Ever. Somebody on the panel said, “Get the books.” Yeah, I’m gonna do that. But it’s a comedy series and every presentation that I’ve ever experienced about anybody disabled in any way, has been tragic. And so, how do I do this in a comedy without exploiting the character, without doing stupid jokes? I’m already on that fight about the race issue. They’re gonna say, “You’re gonna come in and be black and disabled? My God!”
EMILY PERL KINGSLEY:
My suggestion to you would be, just write her in as one of the characters there. You know, just have her be there. You don’t have to point to it. You know, just give her the same comedy lines as someone who had both her legs.
RICHARD WILLIS, JR.:
I mean, is that acceptable?
Another thing about comedy is that it’s often about dealing with oppression, and making jokes about it. It doesn’t have to be making jokes that are centered around the experience of disability.
The deal is that you’re sensitive to it as a black man, so just bring that sensitivity to it, and you’ll figure it out. And again, find yourself a consultant or somebody to talk to about it, to run some certain things past. I might reveal some bad stuff here, but I laugh like hell at some stuff Richard Pryor said about disabled folks just because he was irreverent about it, and you knew he was being outrageous and just straight up for that purpose saying, “How far can I go before somebody hits me with something?” And that’s all right with me. Some people might find it problematic. South Park tickles the hell out of me, they go too far, too often, but hey, I’m right there with them. I’m turning it on next week. I gotta see what’s coming next [Laughter], who they gonna offend tomorrow?
A really brief thing to add. A rule of thumb is, “If it’s real, it’s OK.” I mean what we’re laughing about now. If you’re watching, if you can see this: There’s this funny thing going on between the panelists and the interpreter and the microphone. Little things like that can get turned into material.
I think Sharon wanted to say something?
I just wanted to say that the Non-Traditional Casting Project is also a resource to you, if you have questions. And we also have a disability advocate on staff, Christine Bruno, who is here with us tonight. That’s what we’re here for, to answer your questions. However, there are some times when hiring a consultant for larger projects is the appropriate response. And in those instances, there is Lynn, based in Los Angeles. The Non-Traditional Casting Project can also refer consultants to you, and in those cases it would be on a paid basis. But that’s when you are working on a large or ongoing production. The only other thing I just wanted to mention, quickly. In our closing reception, there’s a reel of some examples of how disability has been portrayed that runs for 20 minutes.
And there’s lots of South Park there.
I do think there is a built-in fear of doing something wrong, and it brings to mind an episode of the HBO series Extras. Ricky Gervais? In the pilot episode, there’s a character with M.S., and the source of the humor is the nondisabled character, and in his fearfulness, his inappropriateness, his carefulness, he makes every mistake. And so he is the source of humor, not the disabled character.
I would also say don’t push it too hard in the pilot. You have a whole season ahead of that show.
Hello, my name is Christopher Roberts, and first of all I’d like to say, thank God you’re having a conference like this because I think it’s invaluable. I’m an actor, a director, and recently, a playwright. I’ve been an actor since I was maybe 14, and throughout that time, I’ve been legally blind. Recently, last fall, I became completely blind. To answer Richard, in high school, I was a little bit irreverent, like Lynn said about Richard Pryor. I would walk down the hall to touch girls’ butts and I would say, “Oh, I’m sorry, I didn’t see you there.” [Laughter] You know, stuff like that. The ability to laugh at oneself is human—not black, not white, not wheelchair-using; it’s human. So I think that’s one thing you might want to look at, the ability to laugh at oneself. The other thing is, I’ve been fortunate as an actor, in a sense. I’ve acted in Oz where I come in and—I think Tom Fontana wrote it—and at the end I touch his face. That’s connected to what Lynn said, or David, about being “soulful.” Sometimes we’re not all soulful! You know, we’re not all spiritual, and we can’t all tell the future! [Laughter] The thing I’d like to ask about and receive help with, if there are possibilities out there. Not to reveal too much, but I’ve written a play that speaks loudly, and what I’m having trouble doing is finding space or help or accessibility either to get it read, or get space to have people read it, or for me to hear it, because right now I use computers which talk like this (he says in robotic tone). So I have this script, and I can’t hear it the way it sounds in my head. How does one in my position—being big, black, and blind—get that help? And last but not least, I want to write it into a screenplay. How does a person with no vision do work in a medium that is visual? Do you know what I mean? They’re saying something about storyboards, and images. Anyone?
I think I’m very visual in the work I do. If you have no qualms about what you write, you had some vision for some part of your life, or if you didn’t, then you speak to somebody who can give you insights on that. We’ve talked about researching a disability you don’t have. I think it flows both ways. You have to find a consultant—somebody to help you do that—but I wouldn’t hesitate to write the piece as best as you can the first time around without any assistance for the visual stuff, and see what comes of it. Write a basic description of what happens, and then see what you end up with. I think if you listen, or look at the lyrics of somebody like Stevie Wonder, who didn’t have sight for any significant period of his life. There’s a lot of visual reference going on in his stuff that’s absolutely and totally believable. I don’t know where he gets it, but he gets it. Don’t let someone say you can’t do that because it’s a visual medium. Just do it, and then you can get assistance filling in what’s missing.
I’d agree with that. I’d also say that most directors ignore most writers descriptions in screenplays anyway. So write your script. [Laughter] I’m being serious. They hate seeing when a writer puts a camera angle down. I’ve been on a set where there was supposed to be snow, and no one noticed there was supposed to be snow. So don’t worry too much about it.
Hi, I am Daryl Chill Mitchell. I am an actor. A new writer. I am here because Sharon told me there was going to be brown liquor and white women. [Laughter] No, I am just kidding. Wake you up, wake you up. Before I was a disabled actor, I was a prominent actor. And I have faced discrimination, from age discrimination to race discrimination. The thing I want to say about Hollywood is that when they want to do something, they can do something. A lot of my work when I got back out of the hospital after a motorcycle accident was thanks to a lot of people who stood up for me, a lot of directors who knew my work from before, who knew that I could work now. And they made phone calls and they got me in the room. And the first experience I had was the TV show, Ed. John and Rob, after the first season, admitted to me that they didn’t know what to say to a person in a wheelchair. They were like, “What do we say to him?” They were really nervous seeing me in the room. We talked and I made them feel comfortable, and they called me and said, “We want you on the show.” So that’s what I tell writers, is if you don’t know what to write, just write. Just write. And, you know, they knew the wheelchair was going to take on a life of its own. I told them that, “The wheelchair is going to take on a life of its own. There’s certain curves it’s not going to make. There are certain doors we ain’t going to go through, and you’re just going to have to rewrite something else”. There’s another experience I had, while I was on the show. We did a scene while I was in rehab. They hired disabled people to come in and to play the roles of other patients in the rehab center. We were sitting down and I had to do this thing, where I got in the standing frame. I told them, “Man, you know?” they stood me up and I said, “Wow, this is emotional, you know? This is something I haven’t done in two years. You guys are seeing me stand for the first time in two years.” And the cameraman started crying! You’ll see that sometimes things have a tendency to take on a life of their own. I say that to the writers all the time, “Just write it, it will take on a life of its own.” When I was doing [The ]John Larroquette [Show], they used to try to write me black. They would write, “And then Chill says this, and then he slapped five.” Slap five is not a thought, it’s a feeling. We don’t slap five because we thought about it, it’s a feeling. A lot of the time they wrote words, and I was trying to say the words, and I was trying to say them because I knew I was supposed to. But when it came to Ed, what happened was, the writers would say, “What would happen in this situation?” I had to describe my accident. They didn’t understand about a T-Level, or about a T-4, or about that stuff. They didn’t know about sexuality. And we talked about me and sex. So I learned they didn’t know how to write this stuff. You know what? It’s about being open.
Just write it.
Okay. Adam –
My name is Adam Linn, I’m a filmmaker. I wanted to ask a question, but first, I really want to encourage the gentleman who was talking about screenwriting. I’m a blind filmmaker, and the nature of film is so collaborative, people are just amazed, they don’t think a blind person can direct a film. People don’t realize that you work with these teams. You work with editors, you get your hands in there, you block yourself, you use dolls for storyboards. If you can do geometry in high school, you can storyboard a script. So, it just takes some adaptive techniques, and it isn’t miraculous or anything even though people love to call it “inspirational.”
That being said, it is so hard to get the general public off of the clichés that they love, they enjoy them so much. I submitted a script to Project Greenlight a couple of years ago, and it did fairly well. The way Project Greenlight works is that there are about 8,000 entries, and it’s peer-reviewed, and they whittle you down to 250, 150, something of that nature. So, I did make it to the top hundred, that was—percentage-wise—pretty good. I had my three-act structure down, things like that. So, once you get “not asked to continue,” you can read the comments of your peer reviewer. And, I was amazed. There were some very positive comments. But, the overwhelming majority of the negative comments were about the primary character, a blind guy who’s got a problem with cocaine. He doesn’t treat the blind girl that’s in his life very well. And, my favorite was this scathing comment: “Sir, whoever you are, this is an offense to the disabled community, and I hope this project never goes forward, and whatever you do, next time do a little research.” [Laughter] It’s very tough. I recently shot a short film, and I’ve done the festival circuit, I’ve done well. I’ve certainly learned to be pushy. I guess I’d give that advice to anyone out there who hasn’t figured that out yet.
People don’t necessarily realize I’m not some hipster trying to make blind people into metaphors, and that I’m blind, that my other characters—in my short—are blind. I have had to call festivals and talk to directors, ‘cause I know they don’t really know I’m blind, and although I’m not saying, “Let me in because I’m blind,”—certainly some of them have not been afraid to say no—and that’s fine. But they have a different perspective if they know that you’re coming from a genuine place and not just a psycho who thinks that blind people should be represented differently from their clichés. So, the question is: How do we overcome the hundred years of film and theatre clichés that people are comfortable with in order to say, “This is what we’re gonna give you, it’s genuine, and you may not like it?”
I’ve seen the same thing with stage. People will say this person is denaturing disability, not knowing that is exactly what the person wants to do. The person who drags the blind person’s cane to tell them where they want them to go, that’s real. We need people in power at all different levels. That knowledge needs to be spread around.
I also wouldn’t take it too personally. They are just as idiotic with nondisabled writers. Part of showing your work to people is getting your heart broken nine or 10 times. They just can’t help themselves.
You just have to keep doing it. You have to keep producing stories off the beaten track.
I’m David Steven Cohen. I’m a writer. I grew up watching TV shows that had a distinct sense of irony. Why, oh, here’s a guy in a wheelchair named “Ironside.” Did he take that name because he was in the wheelchair? What was his name before he was in the wheelchair? And the blind insurance inspector, why was he named “Longstreet?” It feels like a much different time. But really, my question has to do with how you balance, as writers, the question of the cure narrative. As a society we want to cure all our ills, not just our afflictions, but the world’s afflictions. How do you balance that in your writing? It seems that there are two cures: One is the question of curing the disability, and the other is for the general population to accept disability and to feel comfortable with it. I see a social push, since the first telethon, to focus so strongly on the cure for the disability, but this should never eclipse the need to live with what you have and to gain unqualified acceptance.
That question about the cure. I think it came up in November, as well.
Hopefully it wasn’t me who answered it in November. And if it was, I hope I stay on the same track and offer some consistency. I’ve done some work myself on the topic of cures being more problematic than not. I think the way you balance it, since balance is really what you’re asking about, is that you have to depict the reality that for some of us, our lives are just fine, you know? Just fine. There’s nothing to cure! You see? And that’s what we have to come to terms with. I was shot in the face when I was 23 years old. Totally blind, irreversible, it’s done. You know, I had come to terms with it. This is who I am. This is what I am, this is how I am, and my life is good. There’s nothing to cure. When I get asked about a cure, it confuses me, it flummoxes me. It’s like, “Why would I want to do that?” I think for a lot of people, that’s how you balance it. You take the fact and the reality that life is good. Just get outta my way!
EMILY PERL KINGSLEY::
I have a slightly different perspective on this. In addition to my writing for Sesame Street, I also did a CBS Movie of the Week, years ago, about our family’s experience of raising a child with Down syndrome. And the way that I found to handle what you’re talking about, is to tell the whole story, be totally honest, and acknowledge the pain. This is pretty much the mother’s story. I was fortunate in that even though I was dealing with requested rewrites I got to retain the essential honesty of the story, which included the mother’s journey of accepting the change in plans, from what had been expected, you know, all of the plans she had made for this wonderful child she was going to have. I wrote a piece called, Welcome to Holland, which some people may be familiar with, which has become well-known. And it is basically about the plans that you make, and then there’s some kind of change in plan that came out of the blue that you didn’t expect, and what you have to do is make the adjustment, find out about the new thing. You started out, you wanted to go to Italy, you landed in Holland. And it’s just a different place. It’s a little bit slower-paced; it’s a little bit less flashy than Italy. Everybody you know is going back and forth from Italy and bragging about what a great time they had there. And you’ve got to acknowledge the loss of that dream. You’ve got to say, “The loss of that dream is a very painful loss,” but only when you can do that, and say, “OK, that’s part of my life, and now I’ve got to learn about this new place.” And after you’ve been there for a while, you find out that Holland has tulips, and Holland has windmills; it’s just a different place. But if you’re either stuck mourning the fact that you didn’t get to Italy, you’ll never be able to enjoy the really lovely thingsthere are about Holland. On the other hand, if you’re so besotted with Holland as the best place you’re ever been, and you don’t acknowledge the fact that you really wanted to go to Italy all that time, that’s not going to be real and true either. And, so what you have to do is really grasp the totality of the experience. The plusses, the minuses, the challenges, the rewards, the joys, the gains. And that’s when you can be honest about telling your story.
I think it’s good advice in general.
My name is John Kawie. I was an actor in stand-up. I had a stroke. I like the August Wilson and the Bill Moyers story. Because there’s universality in disability. I was in stand-up, so I wrote a solo show about the stroke called, Brain Freeze. Some of it’s funny. It really hit me, the universality of what disabled people go through. You know, I wrote a show about walking down the street in New York and—strollers, which I hate. And you know, you can kind of relate to that; a lot of people have a lot of problems walking down the streets of New York City. So, the universality of what we go through is an important thing for writers to know, as in the Bill Moyers and August Wilson example. There’s universality in what we go through. Everybody has frustration, not just the disabled, everybody. That’s the key point I wanted to make.
I kind of wanted to follow Daryl. I am Clark Middleton. I kind of wanted to follow Daryl because I showed up tonight because I was told there’d be white wine and black women. [Laughter] Anyway, I wanted to say that I’m an actor, and I’ve been an actor for 20-plus years, professionally about 20, and I’ve worked with many writers, but it’s writers in particular who have changed my whole experience and changed my professional experience. Two people in particular—well, three, John Belluso is another story altogether—but Sam Shepard and Quentin Tarantino, both of whom had written parts for me that really had nothing to do with being disabled. I have a long, long history with what’s called juvenile rheumatoid arthritis, and in all of these situations, there were many issues in relation to the casting, because I had the disability and it was the writers that really pushed the envelope on that. And, of course, John wrote this remarkable play [The] Body of Bourne. I think the second half of that play is maybe the only experience I’ve ever had as an actor where I felt I was playing someone closest to how I live, or that captured the fullest part of my humanity. On that note, a thing that really comes up for me a lot is, first of all, I think that disabled people are fucking sexy people, man! And you know, we have to bring that component to our work. Pardon my language, forgive me, but sincerely I mean it. I had an experience a few years ago—and this may sound a little vain, I really don’t mean it that way. But I was doing a play at the Actors Studio, and I was playing a photojournalist, a war correspondent, and I thought, “Well, here’s my chance.” And so I played with that, my sexuality, you know, I really brought it out. I was really using that part of my humanity, and one of the other actors came to me, and said, “You know, a very strange thing is happening—a lot of women I know have seen this, and keep saying, “What’s going on? That guy is kind of sexy.” ‘Cause I guess we’re not supposed to be! And I’ve actually had that with producers and directors who say, “Can you sort of tone that down?” So, I’m gonna leave it on that note. But I really think the writers, I really think that all of you have to remember, we’re just as confused as everybody else, and, we’re normal, like Lynn said. Just explore, explore that. You guys are courageous. Do it. You’ve always done it before, and it’s a challenge I hope that you take.
That’s not a bad note to end on. I do just want to remind you of one thing. I think there was something quite interesting in what you said about your grandmother [referring to Richard Willis, Jr.], and how you haven’t written about her. If 50 or 60 million Americans are disabled, that means that every writer in this room knows one, or two, or three, or five. And you probably haven’t written about them, as often as you have written about the high school bully, because that guy you wanted to get back at. [Laughter] The best writing we do, usually, is when we write about things that make us uncomfortable. Things that give us pause. And also, when we think about this as a story about a minority whose stories have not been told. That’s part of our job, to get that out there. To tell the stories. Know you’re going to screw up, and you’re going to make some awkward mistakes, but you’re doing that with your nondisabled characters as well. So, rely on your actors, rely on yourselves. Don’t assume you shouldn’t go there. Push yourselves, and see what happens. And in that spirit, we have one encouraging announcement which Diana Son will make.
We are here tonight in large part because of John Belluso’s initiative. So, I’m very happy to talk to you about The John Belluso Writing Initiative. Many organizations are working together to establish The John Belluso Writing Initiative, the purpose of which is to identify, encourage, and where possible, provide development opportunities for writers with disabilities. The Mission Statement comes from remarks John made in February  regarding his plans for tonight’s event, but which might coincidentally have also described the writing initiative: “The John Belluso Writing Initiative will provide an opportunity to represent disability in new models, with new ideas, and new representations, and to challenge stereotypes through a process of mutual learning and dialogue. The initiative will provide the opportunity to tap into the imagination of writers who will be creating these models and representations.” The initiative is intended for those disabled women and men who have identified writing for theatre, film, and/or television as a serious pursuit. Through this program we hope to identify and recognize talented individuals whose artistic development can be well assisted by the range of resources we collectively have to offer and can bring to bear. For the first round, we will reach out to appropriate communities and resources and begin with an invited pool of writers. As part of the evaluation of each writer for participation, we will look for those who most “embody the spirit of John”. We hope to formally announce and launch the John Belluso Writing Initiative in the fall of 2006.”
I thank you all again for coming. I thank the Writers Guild of America, East, The Writers Guild of America East Foundation—we’re going to be bothering the West Coast Guild as well—The Dramatists Guild, New Dramatists, The Non-Traditional Casting Project, HBO, the interpreters, who have done a great job tonight—our sound guy and there are many more thanks in the program, but for now I am going to say, eat, drink, watch the clips, and start talking amongst yourselves.