Jessica Tomko: Representation of disability in the entertainment industry


Representation. We see this word used a lot these days. It has become associated with the struggle for social justice, a quantifiable goal, a hashtag, a marketing effort. In short, it has become a buzzword.

I am a 31 year old woman with a disability, and I can say with certainty that I did not even understand the importance of representation until recently. Throughout my childhood, I was involved in advocacy efforts for the rights of people with disabilities. Despite my involvement, or maybe because of it, it took me a while to figure out where one of the biggest gaps in the representation of disability lies, and how big that gap is: on our screens.

It’s a weird feeling to finally recognize something you haven’t even known you’ve been missing for so many years, and realize the power that this missing piece holds. While I spent my childhood representing the disability community, my list of role models with disabilities growing up was woefully short. While some may criticize the negative influence of the entertainment industry, the possibility of a positive societal impact of film and television is a largely untapped resource.

It makes me wonder – if I had seen people like me in film and television during my formative years, could I have saved myself years of insecurity and unidentified internalized ableism?

Despite being surrounded by supportive friends and family, my existence still tends to feel like an anomaly at times. I feel like I wasn’t meant to be like that. I am here now and I am sure that we will manage, but society as a whole is constantly telling me: remember, your existence is not normal.

The thing however is – my existence isOrdinary. The percentage of people with disabilities is significantly higher than described in the media. According to the Ruderman Family Foundation, 20% of the population has a disability, yet characters with disabilities make up a paltry 1% on television. Of these 1% of disabled roles, only 5% are actually played by a disabled person.

It is therefore not surprising that seeing someone with any type of disability in any form of media offers a strange sense of validation of my existence and my role in society. At the same time, seeing a non-disabled person play the role of a disabled character directly invalidates my existence. He tells me – I see you and I reject you.

The lack of proper portrayal of people with disabilities in movies and on television directly reflects society’s lack of commitment to the disability community and the apparent misunderstandings about our existence.

This is nothing new. I can list countless movies and TV shows that capitalize on a disabled character but hire an able-bodied person. Some of the more recent ones that come to mind are “The Basics of Compassion”, “Doom Patrol”, “Atypical”, “In the Dark” and “How to Sell Drugs Online (Fast)”.

A recent and highly problematic inauthentic portrayal can be seen in Sia’s film “Music,” in which she hired Maddie Ziegler, a neurotypical person, to play a neuro-divergent character. When explained to her why this casting was inappropriate, she refused to listen and made herself an enemy of the very group of people she attempted to portray in her film. Although she has since apologized, this is a classic example of intent gone awry.

While I understand that the intention of such productions may be to enhance the aforementioned disproportionate depiction of disability, the intention is not sufficient.

Intention without representation favors the trope-like characterization of people with disabilities. It flattens the disabled experience into a one-dimensional representation that is presented as “diversification” and delivered to the world as truth. In reality, the experience of disability is as broad and deep as the human experience. There are, however, certain experiences and truths that only a person with a disability would fully understand and which allow for a more authentic portrayal.

In addition, writing a character with a disability and not allowing a person with a disability to profit financially from that representation is, by definition, appropriation. It trivializes disability and then steals the financial gains of the disabled population.

Disabled roles are so limited that hiring a non-disabled person in a disabled role removes an opportunity from a group of people whose opportunity is already limited. It is making money at the expense of an underserved and under-represented group. Heck, I couldn’t even get a part in my high school musicals because none of the roles called for a girl in an electric wheelchair.

Yes, there may be exceptions to this rule. No, not having the money, resources or knowledge is not a suitable exception. If an organization doesn’t have the money or the resources to find, hire, and support a person with a disability in their work, then they don’t have to take advantage of a disabled character or storyline.

An example of creative storytelling featuring actors with disabilities is the musical “Best Summer Ever”, featuring both disabled and non-disabled characters, regardless of their disability or lack of it. This casting forces the audience to suspend their disbelief and confront their ableism when confronted with a girl in a wheelchair attending a professional dance camp or a popular jock with a developmental disability.

I had the opportunity to see “Best Summer Ever” at the ReelAbilities Pittsburgh Festival. The festival presents films created by people with disabilities, actors with disabilities or highlighting the experience of people with disabilities.

Seeing someone like me on screen was so powerful. Every time I try to explain to someone how I feel when I see a person with a disability on the screen, I feel stupid. It’s silly to admit that the hint of a wheelchair, cane, or ostomy bag can bring me so much joy. And when I wonder why it evokes such strong emotions in me, I realize it’s because it makes me feel seen and truly accepted, and acceptance is a transformative emotion.

Movies like “Best Summer Ever”, along with the other disability-centric films at ReelAbilities, are what made me realize what has been missing from the screen for years, and they are absolutely essential in fostering a change in life. The societal attitude of the representation of disability being the exception being the norm.

I imagine 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 inclusive and truly representative media so that it can become a fairer and more equitable society for all.

Jessica Tomko, a resident of Pittsburgh, works in higher education and is actively involved in advocacy efforts around diversity and inclusion. She sits on the board of directors of Film Pittsburgh and the Andy Warhol Museum.

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