Bitter Gertrude

Photo of a version of the American flag with the stars configured to look like the symbol for disability. (Photo credit: money.cnn.com)

We need a long, hard examination of the way we’re representing people with disabilities on our stages and screens. We talk a lot about equity and inclusion, but almost always ignore people with disabilities in those discussions, leaving our industries far behind where they should be on this issue.

We’re still so far behind that casting PwDs as PwDs is controversial. Able-bodied people fight hard for their “right” to cast able-bodied actors to play us, then shut us out of every aspect of the process. Able-bodied people insist they’re doing “extensive research,” yet portrayals of PwDs are more often than not astoundingly inaccurate, more about how you see us than how we really are.

We’re still so far behind that casting PwDs has been called “exploitative,” as if our physical presence must always be measured by the gaze of able-bodied people. It reminds me of the way sexist writers claim women are “flaunting” their bodies by simply appearing in public. Our physical presence in the world as PwDs (or women, for that matter) is not about you. Our physical presence as PwDs is so deeply othered that any public performance is automatically suspect– it must mean something. Add to that the relentless infantilization of PwDs by able-bodied people, and our every appearance as actors results in a flurry of pearl-clutching about how we’re being “displayed,” “used,” or “exploited,” as if PwDs are children who need protecting instead of actors who need jobs.

It’s “exploitative” when we play ourselves, but ennobling when you play us.

During preproduction for the film The Upside, released in January 2019, producers refused to consider actors with disabilities for the role of Dell Scott, a quadriplegic character, instead first casting able-bodied actor Colin Firth, and then replacing him with Bryan Cranston, drawing criticism from disability rights activists. (Photo by David Lee/The Weinstein Company depicts Cranston seated in a wheelchair on a busy city street, laughing as actor Kevin Hart stands on the wheelchair behind Cranston, leaning down and laughing.)

We’re still so far behind it’s considered a special kind of acting triumph when an able-bodied actor plays us because, like actors who gain weight or allow themselves to be made “ugly” for a role, they’re working hard at lowering themselves, appearing less glamorous, less desirable, less perfect. The actor is ennobled by their humility, by the sacrifice it took to present themselves pretending to be what we are every day of our lives. 

We’re still so far behind that the types of stories we tell about PwDs all center around our difference: inspiration porn, tragedies, the Manic Pixie Sick Girl (and as she’s lowered into her grave, he realizes he has finally learned how to live), and the DEI Sidekick (Hi. I’m here to make the producers look inclusive and the protagonist look sympathetic oops time to die to provide motivation for the protagonist). There are more (so many more) but you get the idea.

Please note that all of these are almost always played by conventionally beautiful, thin, able-bodied white people, and that these issues are intersectional. While this piece focuses on PwDs, bear in mind that people of color with disabilities are facing two major hurdles; female-identified and genderqueer people of color with disabilities are facing three, etc. Women of color are in fact the vanguard of disability rights activism.

Writer and activist Imani Barbarin, who runs the blog Crutches and Spice, is the force behind #DisTheOscars, an advocacy campaign around disability representation in the media. (Photo by Madasyn Andrews depicts Barbarin, a Black woman with long, thin dreads, smiling in a garden setting, wearing a blue flowered dress and a black jacket, with one of her crutches visible on her arm.)

In the United States, between 13 and 19% of the population are PwDs. That’s a sizable population, yet we are aggressively shut out of every aspect of visual narrative, our stories stolen from us and told by able-bodied people, for able-bodied people.

This begs the question, “What are our stories?” It’s an important question, because the answer is: ALL OF THEM, KATIE. We’re a massively diverse population occupying every race, gender, sexuality, age, belief, and socioeconomic status. The vast majority of our stories are not “disability stories.” We are people with disabilities– people first– and the majority of our lives are spent wrapped up in the same issues everyone else has. Yet nearly every film, play, or show that hires an actor with a disability is doing so specifically to tell a “disability story”; when that narrative is over, the actor is released. We’re rarely allowed to tell any other kinds of stories. Disability is only represented when the story is about disability in some way.

Because we are hired far less frequently than able-bodied people, even with similar training and experience, we’re seldom in the room when these stories are developed, and if we are in the room, we’re one voice– often brought in late in the process as a low-ranking temporary hire (“disability consultant”). It’s no wonder that stories about PwDs are so often about the impact the PwD has on an able-bodied person.

Lack of representation is a vicious circle. Because we are so seldom represented as anything but life support for able-bodied inspiration, PwDs are almost never considered for “straight” roles. It never occurs to producers and directors to cast an actor with a disability in a story not specifically about disability, because they, like the rest of us, live in a world where PwDs are dramatically under-represented throughout all of our media and have come to see that under-representation as “normal.”

Our industries create fantastic, imaginary worlds, but we can’t imagine a Juliet with a mobility device? Our imaginations can comprehend time travel, dragons, talking animals, alien cultures, telekinesis, and 500 different kinds of afterlife, but a disabled Hedda Gabler is incomprehensible? You think that if you cast a PwD, the narrative becomes about the disability because those are the only stories we allow PwDs to tell. 

Marilee Talkington, a brilliantly talented actor, has a long career of playing both blind and sighted characters. Talkington has played blind characters on several TV shows recently, drawing praise from the National Federation of the Blind and their #letusplayus campaign. (Photo by Cheshire Isaacs depicts Talkington from the shoulders up: a white woman with curly red hair, blue eyes, and coral lipstick, wearing a wine-colored sleeveless top.)

Allow people with disabilities to tell all kinds of stories, including our own. The right to portray someone different than you is not the exclusive province of the able-bodied. Able-bodied people defend their right to play us with “It’s called ‘acting'” without ever once considering that we can do it too.

Hire people with disabilities at every level, from conceptualization to casting to audience management, not just in temporary positions meant to shield you from controversy. When you talk about “inclusion,” remember: we’re here, and we are not going away.