Representation. We see this word used a lot these days. It has become associated with the fight for social justice, a quantifiable goal, a hashtag, a marketing effort. In short, it has become a buzzword.
I am a 31-year-old disabled woman, and I can safely say that I didn’t even understand the importance of representation until recently. Throughout my childhood I was involved in disability advocacy efforts. Despite my involvement, or perhaps, because of it, it took me some time to realize where one of the largest gaps in disability representation lies, and how significant that gap is: on our screens.
It’s an odd sensation to finally recognize something that you didn’t even know you were missing for so many years, and to realize the power that missing piece holds. While I spent my childhood representing the disability community, my list of disabled role models growing up was frighteningly short. Though some may criticize the negative influence of the entertainment industry, the possibility of disability-positive societal impact from film and television is a largely untapped resource.
It makes me wonder — if I had seen people like me in film and television in my formative years, could I have spared myself years of insecurities and unidentified internalized ableism?
Despite being surrounded by supportive friends and family, my existence still tends to feel like an anomaly sometimes. It feels like I wasn’t meant to be this way. I’m here now and I’m assured that we’ll make do, but I’m constantly being told by society-at-large: Don’t forget — your existence isn’t normal.
The thing is though — my existence isnormal. The percentage of people with disabilities is significantly higher than the media portrays. According to the Ruderman Family Foundation, 20% of the population is disabled, and yet disabled characters make up a paltry 1% in television. Of that 1% of disabled roles, only 5% are actually played by a person with a disability.
It is no surprise, then, how seeing someone with any type of disability in any form of media offers a strange sense of validation for my existence and my role in society. At the same time, seeing someone non-disabled play the role of a disabled character directly invalidates my existence. It says to me — I see you and I reject you.
The lack of appropriate disability representation in film and television directly reflects society’s lack of engagement with the disabled community and the apparent misunderstandings about our existence.
This is nothing new. I can list countless films and television shows that capitalize on a disabled character but hire an able-bodied person. Recent ones that come to mind include “The Fundamentals of Caring,” “Doom Patrol,” “Atypical,” “In the Dark” and “How to Sell Drugs Online (Fast).”
A recent, highly problematic unauthentic representation can be seen in Sia’s film “Music,” in which she hired Maddie Ziegler, a neuro-typical person, to portray a neuro-divergent character. When told why this casting is inappropriate, she refused to listen and made an enemy out of the very group of people she attempted to represent in her film. While she has since apologized, this is a classic example of intent gone wrong.
While I appreciate that the intent of such productions may be to improve the aforementioned disproportionate disability representation, intent isn’t enough.
Intent without representation furthers trope-like characterization of individuals with disabilities. It flattens the disabled experience to a one-dimensional representation that is packaged as “diversification” and delivered to the world as truth. In reality, the disabled experience is as broad and deep as the human experience. There are, however, certain experiences and truths that only a disabled person would fully understand and that allow for more authentic representation.
Further, writing a disabled character and not allowing a disabled person to profit financially from this representation is, by definition, appropriation. It’s commoditizing disability and then stealing the financial gains from the disabled population.
Disabled roles are so limited that hiring a non-disabled person in a disabled role is removing opportunity from a group of people whose opportunity is already limited. It’s making money off the backs of an underserved and underrepresented group. Heck, I couldn’t even get a role in my high school musicals because none of the parts called for a girl in a power wheelchair.
Yes, there may be exceptions to this rule. No, not having the money, resources, or knowledge is not an appropriate exception. If an organization doesn’t have the money or resources to seek out, hire, and support a disabled person in their work, then they have no business profiting off of a disabled character or storyline.
An example of creative storytelling featuring disabled actors is the musical “Best Summer Ever,” featuring both disabled and non-disabled characters with no regard to their disability or lack thereof. This casting forces the audience to suspend their disbelief and confront their ableism when they’re faced with a girl in a wheelchair attending a professional dance camp or a developmentally disabled popular jock.
I had the opportunity to see “Best Summer Ever” at the ReelAbilities Pittsburgh Festival. The festival features films that are either created by disabled individuals, feature disabled actors or highlight the disabled experience.
Seeing someone like me onscreen was so powerful. Whenever I try to explain to someone how it feels when I do see a disabled person onscreen, I feel foolish. It feels silly to admit that the hint of a wheelchair, a cane or an ostomy bag can bring me so much joy. And when I wonder why this evokes such strong emotions in me, I realize that it’s because it makes me feel seen and truly accepted, and acceptance is a transformative emotion.
Films like “Best Summer Ever,” as well as the other disability-centric films at ReelAbilities, are what made me realize what had been missing from the screen for years, and they are absolutely critical in fostering a societal attitudinal shift from disability representation being the exception to it being the norm.
I picture our society as a living, breathing entity that is constantly growing, learning and evolving. What we consume has a direct impact on our actions. As such, we must nurture it with media that is inclusive and truly representative so it can grow into a more just and equitable society for all.
Pittsburgh resident Jessica Tomko works in higher education and is actively involved in advocacy efforts surrounding diversity and inclusion. She serves on the board of directors for Film Pittsburgh and The Andy Warhol Museum.