An Open Letter to Hollywood: Inauthentic Representation of Disability Isn’t Representation At All

A retro red television with antennae sitting on a wooden surface in front of a mint green wall. The TV has an accessible icon on it.

Growing up, I spent a lot of time thinking about what I wanted to be. It’s a fruitless endeavor at any age, really. But as a young disabled woman, my daydreams were harder to contrive than I imagine they were for my non-disabled peers. I didn’t have grand visions of being a movie star or a doctor or a big shot on Wall Street with all of the glamorous trappings that sometimes come with those professions. 

Perhaps this is because I rarely saw anyone who looked like me on my screen. Watching disabled people on screen achieving their goals might have helped me build more intricate dreams of my own. When I say “disabled people,” I mean characters played by actors who live with a disability. As soon as I learn that a non-disabled actor is playing a disabled part, it reinforces for me that the world literally doesn’t think people with disabilities can play ourselves. 

I might have been an actor, a lawyer, or a fashion designer. I’ll never know because I wasn’t allowed to see these things as a literal possibility. So, I had no idea I was allowed to fathom them in my mind for fun. It’s 2020 and Ali Stroker has a Tony Award for playing a character who is traditionally able-bodied. Most people would probably agree that time has run out for giving excuses for the lack of disability representation by disabled performers in the media. Yet, the excuses are still rampant.

In fact, when considering more than just numbers, most narratives about disability negatively represent the community. According to GLAAD’s 2019 “Where We Are On TV “report, characters with disabilities make up only 3.1% of regular characters on network TV. But this is nothing new.

Equally troubling is that according to the Ruderman Foundation’s “White Paper on Authentic Representation in TV,” in 2018 only 12 percent of all disabled characters on TV were played by disabled actors. This is an improvement from 2016 when that number was only five percent. But the progress isn’t as positive as it seems, because according to The New York Times, most of the storylines about disability on TV portray it in a negative light. Plus, The Times reported that in 2018, only two roles on the top 10 shows were authentically cast.   

This lack of authenticity means I’m still in the same situation today as my 15-year-old self was years ago. It sends a horrible message to all people — disabled and non-disabled. If disabled actors can’t play themselves on TV, what can they do? Not work, apparently. If we aren’t allowing disabled actors to play disabled people, then what does society trust us to do? Teach children? Provide medical care? Defend criminals in court? People with disabilities can and do pursue these careers. But seeing that reality represented would make it easier for some disabled people to know what they can achieve. Representation isn’t enough anymore. We need to start demanding authentic representation in all forms of entertainment. 

To that end, I’ve started to research the actors who play disabled characters when I see them on TV. If the actor isn’t disabled in real-life, I reach out to the production team on social media to ask why they’ve made this discriminatory choice. For example, when I saw that an abled actor was playing a man with Duchenne muscular dystrophy on FOX’s The Resident (currently one of my favorite shows), I tagged showrunner Amy Holden Jones on Twitter questioning the choice. The subsequent conversation was frustrating, to say the least. 

Jones showed a complete misunderstanding of how important it is to listen, learn from, and respect disabled opinions to make true progress with disability representation on TV. Her refusal to acknowledge the problem with writing a disability storyline that requires a character to do physical stunts beyond a disabled actor’s ability was disheartening. “This role also required extensive stunts hanging on wires, physical risk. It’s easy to throw rocks,” she replied.

From my perspective, if a show has to use an abled actor, they have even more of a responsibility to at least hire a disability consultant on set. It was obvious from the dialogue and plot of the episode — in which a patient knows his life is ending and has a zero-gravity experience with the help of a doctor — that no steps were taken to make sure that the experience felt authentic to someone who has actually has Duchenne’s. 

Jones claimed I wasn’t in possession of all of the “facts.” But the facts are that I’m a disabled woman who felt uncomfortable with the way my identity was being portrayed on TV. While Stephen Hawking had a zero-gravity experience in real-life (so the scenario is plausible), stunt doubling is also a real job. If there’s no way to do the stunts with a disabled actor and an abled stunt double, maybe rethink the story. 

My intention wasn’t to attack Jones for one mistake. I had hoped to feel heard, but no matter what she claimed, her final response to me made it very clear she had absorbed none of my words at all. “Next time we’d do the same…This is the story we wanted to tell. We are proud of it.”

By that point in the conversation, my emotional energy was spent. But it made me realize that I need to be screaming louder about the importance of authentic representation in the media. Shows comparable to The Resident, like New Amsterdam, have a pristine history of casting people with many different disabilities authentically, so it’s possible. In my experience tracking disability representation on TV,  a record like New Amsterdam’s is rare.

More common is what I’ve dubbed “the Artie effect” in reference to the paralyzed character on Glee, another FOX show that ran from 2009-2015. A disabled character is played by an abled actor and shows want credit for representation. This isn’t representing anyone — it’s extremely offensive. But at least Artie was a series regular. Most disabled characters on TV are guest stars who come in to give a nauseating inspirational lesson to other characters and viewers. Then they disappear or die.  

Change doesn’t start by moving mountains and underrepresented communities know that. But we are tired and excuses don’t look good on you. Do you know what might look good? Authentic representation of the disability community. Our stories are so rarely told with respect and truth on TV that if you try even just a little bit, you might create something truly unique. In an industry full of reboots, revivals and recycled ideas, it’s a concept worth considering.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Finding Peace On The Disability Terminology Battlefield

Letter tiles spelling out "words have power."

I was a junior in college, newly transferred from a small campus where I was the only wheelchair user to a bigger university known for its disabled community. “I don’t want to sit at the cripple table,” I said to a friend at lunch. At the time, I used the word “cripple” like a weapon and a suit of armor at once. It was an insult I could throw at people I thought were below me and a clear boundary I could set between me and them. You’re probably wondering who “they” are. I wish I had a clear answer, but there isn’t one.

I was desperate to fit in with a cool girl I met on my floor. She was disabled, confident, pretty, and she knew it. She also used the word cripple as a weapon against others, and armor to hide deeply-rooted insecurities about her disability from herself, I later discovered.

My own insecurities slowly eroded with time, but the word “cripple” stuck. Not because I needed a weapon against other disabled people. I actually need the power the word gives me to use against everyone else. I don’t say it for shock value anymore. I use the word cripple because sometimes no other word makes sense to me. I also use it because I can.

Words matter more than ever in this country where no one seems to care what words come out of the mouths of elected officials, no matter what their titles are. So, I support any effort to use kinder language. But abled people seem to think they know the best terms to use for the disabled community. In my opinion, the farther you stray from the objectivity of “disabled,” the weirder things get.

A “handicap” is a golf term or a noun that means “a disadvantage that makes achievement unusually difficult,” according to Merriam-Webster. But my body doesn’t make achievement as difficult as other people’s refusal to make the world accessible to it. So, that term doesn’t make sense. “Special needs” is society’s strange attempt at a euphemism for disability, to make people feel better about “othering” our needs in the first place. What does it actually mean? Terms trying to be even kinder than that are just tongue twisters that I always wonder why I bother to say when I could just say “disabled.”

For a long time, my rule of thumb was, “just say what or who I am.” So, Esme is always just fine. If you have to describe details about me that involve my mobility you could always say “disabled” or “wheelchair user.” Then a few years ago I learned about person-first language and I admit it was a revelation as someone who has always been hyper-aware of adults’ reactions to me. I was a woman with a disability, and taking time to explore what that meant via words and photographs helped me grow internally and as a writer. I felt more empowered knowing that I could ask people to call me a person first than I did when using the word “cripple” in safe and understanding spaces.

Then I began having conversations with disabled people on social media who didn’t feel as strongly as I did about person-first language. They argued that they didn’t have to remind people they were a person when describing other details about themselves. They said that if we really had to remind people we were humans, then we were further behind in our fight for disability rights than they thought. While I wondered if those people had ever heard the phrase “wheelchair coming through” or the word “liability” as much as I have (some were wheelchair users), I understood the point.

Those conversations equalized the battle between identity-first and person-first language in my mind, but part of me wishes that wasn’t the case. Even though the logic against person-first language makes sense, I let other people’s ideas pause the personal growth I was experiencing while using person-first terms. The words “woman with a disability” gave me permission to explore the world literally as a person first without considering the limitations that my disability would add. It may sound silly, but I’d truly never done that before. My disability will always be with me. So, I’d always factored it in when considering what I wanted to do in life. By deliberately ignoring it, I was giving myself permission to take chances.

Without these conversations, my current views wouldn’t have evolved into what they are today. I’m really proud that I’ve grown to accept myself and know how to support others while they are expressing and accepting themselves too.The disability community is diverse and there isn’t always agreement on “acceptable” words that we can use.I no longer use “cripple” to refer to other disabled people. I use it as an adjective — like the or “cripple” stall in a bathroom or the “crip” parking space — or to describe myself.

While most of the conversations I’ve had are discussions and not arguments, the more I think about them, the more I wish we would stop discussing words so much. While it’s important to educate non-disabled people about terminology and what words may be harmful, if another disabled person is using self-identifying language that I wouldn’t use in a non-hateful manner, I choose not to engage about it.  It’s not my place to halt their journey.

What I’ve instituted isn’t a refusal to have any conversations about words at all. Non-disabled people still have a lot to learn about what I know, and I can still learn from other disabled people. But, I’m not the self-identifying terminology police. I’ve learned that you can take positive power away from someone’s chosen terms just by thinking about words too much.

If there is a war of words, if it’s “us” and “them,” the only fight I have the energy for anymore is against anyone using words to spread fear and hatred of people who are “different.” So, crip-up all the nouns you want to and announce your personhood wherever you want within a sentence, friends. If you prefer to say “differently-abled,” or “handicapped,” be my guest. I don’t know what terms are right or wrong, I only know the ones I prefer. Most disabled people would agree that the key to enduring the microaggressions we experience daily is choosing our battles carefully. So this essay is me walking off of the field. This crip, wheelchair-using disabled woman with Cerebral Palsy is off to find a bigger fight.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.