We have been talking about what it means to truly be represented in media at Cerebral Palsy Foundation. Recently an article praising the 2017 movie, Wonder, crossed our paths. Our office is made up of a multitude of perspectives from parents of children with CP, to physical therapists, to people who met the disabled community for the first time through CPF, to a graphic designer with a masters degree and cerebral palsy, to myself–a professional disabled actor who is about to head of to get my masters at Yale School of Drama. We cover a lot of ground and contain a multitude of differing perspectives when looking at disabled representation in media.

Because being a disabled actor is how I make a living, I am quick to draw a hard line on representation. I am quick to chastise movies that use disability themes without casting disabled actors and hiring disabled writers. However, there is great validity in Algarin’s Mighty article, because for her family, it made the disabled experience a little less lonely and alienating, and that is certainly not nothing.

Everyone wants to feel seen. When you’re growing up, especially as kid who has a disability or is othered for physical differences, you desperately reach for media to contextualize your life. You reach out to see the parts of yourself that maybe you’re not so proud of, because you haven’t seen someone like you moving through the world yet. To see your experiences mirrored back to you makes growing up a little less lonely.

When growing up, as a kid with Cerebral Palsy, I voraciously consumed movies that had disabled characters to help me understand my place in this world. I did so almost secretly, not wanting friends and family to know that I really didn’t know how to be or that even though they cared and loved me deeply, they could never really quite understand the feeling of otherness that is moving through the world with a disability. In part, I think I also did this secretly, because the disability representations that I had at my disposal were, well, kind of bad quality and inaccurate representations of the disabled experience. I knew my family didn’t want to watch the movie Daredevil one more time. I knew that Friday Night Lights and Glee, both containing wheelchair using characters, dealt with the disability narrative as one of sadness, tragedy, and tear jerking moments–intended to make an audience cry. I was not proud of these tv versions of disability. I didn’t think of my cerebral palsy as tragic and I definitely did not want pity or tears. I just wanted to know that people like me existed and that existence was acceptable in a world that seemed so clearly not made for me. I used those shows, to place myself in context of a society, knowing those narratives were not mine, but an outsider’s perspective of disability–a perspective about my experience that played into my fears of how I was being seen as a tragedy to all of the abled-bodied people in my life. At the same time as I began rapidly consuming ill-fitting disability narratives, I began really solidifying my passion as a budding theatre actor and singer and I deeply wanted to know that a career for people like me in the arts was possible. As I got older and started to focus more on my future, I shifted my focus from simply searching for disabled narrative and to finding disabled people simply existing in the arts, media, and culture.

And I found next to nothing.

All throughout my childhood, I acted–from professional on-camera work, to school and community theatre to extracurricular coaching and classes. When high school guidance counselors and teachers encouraged us to think about our careers, my mind never really strayed from the path of the arts. It was always incredibly clear: I was going to be an actor and creator, and that was that. I was the most committed and experienced theatre student in my high school’s drama program by a landslide, but when telling my teacher what I wanted to do with my life and where I planned to audition for college I was met with the statement “well, you know you will never be cast, right?” My whole childhood was spent consuming stories about disability and yet, I knew my teacher was right. The world was interested in narratives about my experience, but not actually interested in real people like me. I decided if I couldn’t get cast, I would give up acting and take up directing and playwriting. If people didn’t want to see me, at least I could more accurately represent disability through writing. I so desperately wanted to change the one dimensional narratives from pity and inspiration to the real-life narratives of nuance, daily experience, and messiness that is disability. I wanted to see disabled people experience all facets of life. I wanted to see disabled mothers and fathers, disabled people who work in offices, disabled people who experience barriers of in access, but move on with their lives. I wanted to see disabled people who are romantic leads without their disability being the conflict of the plot.

I found acting again through mentorship and through representation. A year into my undergraduate experience at NYU, I saw myself in two fellow trained disabled actors for the first time. Ali Stroker was emerging on the scene as a fellow NYU graduate and wheelchair using musical theatre power-house and Gregg Mozgala, actor and artistic with CP, had just started his theatre company The Apothetae in NYC. At 19 years old and feeling alone, I sent Gregg Mozgala an a cry for help in the form of an email. I so desperately needed to evolve the way that I saw myself portray and even more desperately needed to know that there were professionals out there capable of strong work, who were doing the grunt work of being disabled actors demanding seats at the table. Since then, my role models who were in the trenches have begun to make history. Ali Stroker became the first wheelchair user on Broadway and (my now good friend) Gregg Mozgala has won a Lortel Award and is working at the top off-broadway theatres in NYC. Seeing people like you allows you to think that you’re worth a spot. The need to see people within the disabled community succeed is why I am, initially, quick to criticize projects that fall short of disability representation. I know first hand what authenticity can do.

Moreover, there are practical, economic reasons behind representation. Unfortunately, in 2018, employment discrimination for people with disabilities is a high ranking issue amongst the community and the arts is no exception. With only 1.8% of media having disability themes and 95% of disabled characters being played by abled bodies actors, it shows there is a clear lack of value being placed on authentic disability-based storytelling. Off camera, to my mind the only writers room of a major network show to staff disabled writers is Speechless, in which Zach Anner is a staffed writer (I would love to be proven wrong on this fact, by the way). The Oscar Winning movie, Shape of Water, had no disabled actors nor disabled writers when creating the project. It’s as if the only people to not profiting off stories about disability are disabled people themselves. Wonder’s box office totals to date grossed over $300.5 million, seldom of which went to any member of the disabled community. If a movie intended to shed light on the disabled experience fails to support the community in which it is representing, does that finely toe the line exploitation? For me, the answer is yes, but I am just one voice within the community.

That said, Cerebral Palsy Foundation and I wanted to hear about your thought about this. We opened up discussion on facebook and instagram and have gotten some incredibly thoughtful responses. One of Facebook community members, OS, mentioned that casting disabled actors simply because of their disability is almost as tokenizing as not casting them–which is a very interesting and good point. Disabled actors need to come to the table being rigorous in their craft. However, that becomes difficult in a world where training programs can be non inclusive and disabled people have less roles to be cast in, thus making them less experienced. Practice clearly improves skill, but how is a community to improve when they get less opportunity to practice? For me, this is a question of equity. What are we doing to create a more level playing field for disabled people in media? This might mean casting the less experienced disabled actor but investing in them via coaching and acting classes. You can read the whole exchange here.

Here’s what the community had to say on instagram:

Where do we go from here?

As I was writing this, CPF and I have been attempting to brainstorm actionable steps to more fully inclusive and authentic media representation. Candidly, I was asked “so if we are going to suggest that people shouldn’t watch the movie Wonder, what do we do? What is an alternative?” This is where I wish I didn’t come up short, but I do. Some days, being a disabled actor feels like carrying the whole world on your back up an out of a hole of harmful stereotypes of disability. When grade school children with disabilities want to perform, let them shine their light while making sure they are working just as hard as their abled-bodied peers. When doing disability awareness programing in grade schools, let students with disabilities write and perform their own stories. Give them the power to take control of their narrative.

Most importantly, look to leaders on the disability arts world who are taking their rightful place, such as Ali Stroker and Gregg Mozgala. Look to up and coming writer and actor with CP, Ryan J Haddad, who is currently in The Public Theatre’s Emerging Writers Group to  how to write your own story with charm and humor.* Or Mickey Rowe, a professional actor with autism, who is the first actor to play the lead character with autism in the Broadway and touring play, A Curious Incident of the Dog in the Nighttime.

For me, it was as simple as knowing I wasn’t alone. To be in good company makes it possible.

*Contains adult content

Written by: Jessy Yates