Making a Place at the Table for Differently Abled Writers
There’s an assumption in the theatre – and perhaps in every endeavor – that all players proceed from the same starting point; that the field is level; and the pack, with identical needs, travels at a single pace. But there are challenges –some obvious; others, less so – when a writer is differently abled.
Case in point: writers generally network and gain visibility as fellows or residents. But writers with disabilities may not be physically or energetically able to take advantage of such opportunities, limiting their access to important relationships and experiences that can lead to work and commissions.
I’ll out myself here: I was diagnosed with Myalgic Encephalomyelitis (ME) – once dismissively known as Chronic Fatigue Syndrome – and Ramsay Hunt Syndrome (RHS) more than a decade-and-a-half ago. These neuroendocrine disorders, for which there is no cure, radically altered my life and the trajectory of my career, including how & when I write. Like MS, symptoms – exacerbated by stress and exertion – include debilitating fatigue, vertigo and imbalance, and bone-crushing, body-wide pain.
I’m pragmatic, not dramatic, in my approach to life & writing, preferring to focus on what I can do, not what I cannot – a perspective, I learned, that many of my disabled colleagues share. I rarely talk about my illness. And because my disability is invisible, most folks have no idea.
At a pre-Covid Dramatists Guild national conference in New York City, for example, when the afternoon sessions were done and my wonderful colleagues were heading off to the theatre, I was heading off to bed, in pain, off-balance and utterly spent.
I just can’t do what others easily do. Not anywhere near it.
When I returned home from the four-day conference, I was horizontal for at least a month, recovering from that glorious activity – NOT tired, but immovably depleted, like a dead battery.
No drama. Just the facts.
So I turned to other writers with disabilities for their perspectives on writing and life. Our experience colors our work, but it need not limit it.
Imagine this isolation:
You’re a deaf or hard-of-hearing playwright attending a play you’ve longed to see. It’s opening night. The audience is electric with anticipation. But there is no captioning – or, if it exists, the automated captions tumble out, racing ahead of the actors, or fail altogether. There also is no American Sign Language interpreter – or, if there is, that person, no matter how skilled, cannot possibly convey the script’s nuance, providing instead a subjective, simplified running synopsis. Jokes, puns, asides, and references are omitted. Only the bare bones of the story can be communicated.
Whatever the medium, you’re missing vital material. And shifting focus from caption to stage or from stage to interpreter, and back, is exhausting. After a while, you give up and glean what you can.
“As a playwright, this frustrates me to no end,” said Garrett Zuercher, author of Quid Pro Quo, who has been deaf since birth. “I want to know the actual words that the playwright chose, experiencing [the] play as it was meant to be experienced. Even when productions are either open-captioned or interpreted, I’m perpetually missing things by looking back and forth between the communication access and the stage. This method of access requires a great deal of cognitive effort, and at the end of a long day, my eyes and mind are often already too exhausted to put in the necessary work required to follow a play. I can’t just sit and take it in like hearing audience members are able to.”
After the show, the indignities may continue. If no interpreter is present, Zuercher can exchange only the simplest of pleasantries with his hearing peers, forestalling any opportunity to network or even socialize.
“My modality of communication is a tremendous barrier,” said Zuercher, who also can be hamstrung in rehearsals and at industry events. “Many times, when at a play, I’ll run into someone I know or have worked with – but, if they’re hearing, I’m unable to communicate with them at a high level of discourse, due to not having an interpreter with me.”
But interpreters themselves, though hard won, can be problematic.
“I always have to fight for interpreters,” said Zuercher, “[but] even when I am provided with such, the majority of them do not share the same extensive background knowledge of theatre that I have. When I refer to plays, playwrights, themes, productions and industry terms . . . the interpreters usually have no idea what I am talking about and stumble over my words, which reflects poorly on me. I don’t come across as informed or intelligent as I really am. Many times, I sign ‘director,’ and the interpreter will voice ‘manager.’ The signs are the same, but in the context of the theatre, ‘director’ is the proper meaning. Most interpreters do not have the contextual experience to distinguish between the two and know the word I intended.”
Maybe you’re a playwright with multiple sclerosis (MS), an unpredictable disease in which the immune system attacks the central nervous system (CNS), particularly ravaging myelin – the fatty substance that insulates the nerve fibers – and interfering with the transmission of nerve signals between the brain, spinal cord and body. Symptoms include debilitating fatigue, vertigo and imbalance, walking difficulties, vision loss and numbness and tingling in the face, body and/or extremities.
Or perhaps you have some other largely invisible immunological, neurological or endocrine disorder. Like other writers, you want to take advantage of all the festivals, fellowships and residencies where your fellows make key connections and gain visibility.
“Why can’t you do it?” your colleagues say. “You look fine.”
But you may have neither the energy nor the mobility to maintain an able-bodied person’s pace, to reliably attend those workshops and roundtables day after day, or even to work an eight-hour day, or several back-to-back, with drinks and dinner afterward, where the networking continues, limiting your access to important relationships and experiences that can lead to work and commissions.
“[MS] certainly makes traveling hard, which, when you are trying to write for TV, or are invited to retreats and festivals, you kinda have to do,” said Chisa Hutchinson, author of She Like Girls, winner of the 2010 GLAAD Award, who was diagnosed with MS in 2008. “It also sometimes makes actual, physical writing a Herculean feat.”
Last winter, said Hutchinson, she had one of the worst MS episodes ever – weeks-long and body-wide. “It was during one of the most creatively demanding times of my life: I was working on two plays, two screenplays, and a couple of pitches. I literally couldn’t sit up for more than seconds at a time. But my brain was working just fine (and I don’t miss deadlines), so I propped myself up on my fucking elbows and typed with my chin practically touching the keyboard. That was hard. But I don’t know what I’d be right now if I hadn’t had that work to focus on during that very dark moment.”
The late poet John Gregory Dunne said, “Writing is manual labor of the mind.” But as Hutchinson demonstrated, it can also be flat out physical, requiring of the disabled writer a super-human effort.
Anita Hollander, a cancer survivor whose award-winning solo musical Still Standing has played off-Broadway, in regional theatres and throughout America, knows the feeling. “I perform my own work, and I have actually lost valuable opportunities by not having the physical energy to ‘go for a drink’ after a show,” said Hollander. “I always choose work over social activity,” she said, “and I do feel I lost out on some very lucrative relationships early on because folks thought, ‘She can’t spend an hour with me? Guess she has no interest in working with me.’”
Hutchinson agreed.
“This is going to sound silly, but the one thing that I really envy about able-bodied writers is their ability to go have a drink after a show or a writers’ room meeting. Sometimes I’m like, ‘Shit, it was all I could do to not fall to pieces just sitting there for two-three hours listening and engaging and offering feedback. I’m tired. All I want to do is go home and rest – and that has nothing to do with the company. I’m not being anti-social. It kills me that I just don’t have the energy to hang out and bond with people who love doing what I love doing.”
“There are many peers I would love to meet for coffee,” echoed Zuercher, “but who’s going to pay for the interpreters?”
Like many disabled writers, Hollander, who serves as National Chair of SAG-AFTRA Performers With Disabilities, has refrained from applying for residencies, but she was wowed recently by the “kind folks” at SPACE on Ryder Farm, a nonprofit residency program located on the grounds of a 223-year-old working organic farm in Putnam County, New York, just an hour north of New York City.
SPACE’s mission, in part, is “to create an environment singular in its ability to invigorate artists and innovators and their work.”
SPACE, said Hollander, gave her the “best week of [her] writing life” last July, working on her new show, Spectacular Falls, an ironic title as the author has only one leg. SPACE, she said, did a rare thing: They asked what she needed. This pro-activity immediately dismissed all fears, anxieties and anticipated problems, she said – hers and theirs.
“I’ve second-guessed every great application for well-known opportunities – Yaddo, MacDowell, TCG – assuming a disabled writer won’t get it,” said Hollander. “We haven’t historically been considered for big stuff because we couldn’t get a literal foot in the door most places.”
But SPACE, she said, was exceptional.
“They called in advance to explain the physical space, asking what I might need to make my stay as easy and comfortable as possible,” said Hollander. “They told me about the lip in a doorway and/or hills, terrain and distance. When I mentioned I might need cushioned seating, they made sure I arrived to find cushions everywhere: at the piano, at the dining table, in the sitting room. They also catered to everyone’s nutritional needs and did pretty much everything possible to make ALL writers (not just me) comfortable and able to devote their time on the farm to writing and creating. I got so much writing done and felt so comfortable, it was a revelation.”
One true champion of playwrights and performers with disabilities, said Hollander, is Nicholas Viselli, artistic director of New York’s Theater Breaking Through Barriers (TBTB), the “only off-Broadway theatre – and one of the few professional theatres in the US – dedicated to advancing actors and writers with disabilities and changing the image of people with disabilities.” The theatre is celebrating its 40th season.
“As a theatre company, we want to tell great stories,” said Viselli. “What I admire about Anita more than anything else is her drive and professionalism as an artist. She is so dedicated to her craft and is the type of artist who will try anything. I don’t believe she possesses any of these characteristics because she is disabled: I think that Anita would be the same incredibly gifted, hard-working professional she is today, no matter what.”
Disabled writers must ask for what we need, knowing that there are always workarounds – like the time Hutchinson felt an MS episode coming on days before a workshop of her play The Subject at Partial Comfort in NYC. Unable to be present physically, she Skyped in.
“We’re so lucky to live in the age of stuff like Skype and Facetime,” said Hutchinson. “Disabled writers ought to be able to participate in long-distance opportunities using those. It’s not ideal, but it keeps us connected and working.”
“I just snatch myself some accommodations,” added the writer, who teaches creative writing at the University of Delaware. “I let the people who invite me out know that I may have some limitations, and they’re generally understanding. Then once I get there, I just set boundaries about what things I can do and what I can’t. South Coast Rep just brought me out for their festival because I’m one of their latest commissioned writers, and the schedule was jam-packed with events. I wound up skipping two meals and a play reading. I just physically couldn’t. I shot them an email, letting them know why I wasn’t around, and they totally got it. . . . They seemed fine with however I could engage with the community.”
One question might be: What actions and attitudes can abled-bodied creatives adopt to help level the playing field for their disabled fellows?
“Open [your] minds. Listen. Look beyond the norm. Support diversity in all aspects – not just actors, but writers as well. And directors. And designers,” said Zuercher, who performed the lead role of Huckleberry Finn in Deaf West’s international Broadway tour of Big River and is a proud member of Actors Equity and SAG-AFTRA. “We are strong. We are resilient. We have endured. We have many positive stories to tell. There are many facets to the disability experience that have not yet been seen onstage, in a large part because we cannot as easily get our stories told. If you really want to know what it’s like to be disabled, to be one of us, let us tell our stories instead of allowing them to be filtered through those who have not yet experienced it. That’s nothing but watered-down and frustratingly inaccurate.”
“Do I hate being Deaf?” asked Zuercher. “No. I love it. It is who I am. I know many hearing people who also have difficulty networking, who feel alone in a crowd, so these issues are not uniquely a deaf thing. . . . I could wallow in my misery, but I don’t want to live in that dark place. I would rather say that I feel driven. Driven to try harder. Driven to do better. Driven to prove myself.”
And those of us who have a disability know one thing for certain: The game can change at any time.
“If one lives long enough, most people will experience disability at some point or another,” said Hollander. “Every human is only a banana peel away.”
