Kicking the Door Open

I’ve never been all that interested in the Oscars. I prefer TV over film and, anyway, I can trust social media to keep me informed of the fashion highlights. Still, I’ve found myself getting reluctantly dragged into the discourse surrounding the lack of diversity and the hashtag #DisTheOscars. Really, it shouldn’t be all that surprising: Diversification of media representation is one of my passions.

I probably don’t have to tell you that disabled people are largely underrepresented in modern media. A few exceptions exist, such as the sitcom “Speechless” or Guillermo del Toro’s film “The Shape of Water,” but overall, our prospects are disheartening. The few disabled characters out there are played by abled actors.

For example, in ABC’s “The Good Doctor,” the show’s autistic main character is played by the allistic Freddie Highmore; Jacob Tremblay wore prosthetics while filming the 2016 film “Wonder.” And then, of course, there’s “Me Before You,” a book-turned-movie that saw its physically disabled main character — played by the abled Sam Claflin — commit suicide, to keep his lover from “wasting her life” in a relationship with him.

It’s a dismal scene, even more so for people like me who have been writing their entire lives. I’ve been working on a sci-fi/fantasy series for a while now, but the past few years have been particularly difficult. It’s hard to drum up motivation when so few disabled characters make it into mainstream media. I can write it for myself, and ultimately, I’m sure I will, but that doesn’t mean there aren’t things I’d rather be doing, like reading poetry or playing Dungeons & Dragons.

Even if I do finish the manuscript, the likelihood of getting it published seems unbearably small. I’m dreading the day when people tell me that disabled people shouldn’t be in X, they can’t do Y, or my book is unrealistic because of Z. It’s inevitable. And yet, writing somehow manages to bring me joy. When I’m depressed, the thought of my book is one of the few things that gets me through the day. So, in many ways, I have no choice — it’s write or suffer, even though writing has become its own kind of torture for me.

Despite all this, to my surprise, the Oscars this year provided a glimmer of hope. “The Shape of Water,” with its nonverbal protagonist, won four awards. “The Silent Child” won Best Live Action Short Film. Six-year-old Maisie Sly, who played the film’s main character, is actually deaf. Well-known actors Bryan Cranston and Patton Oswalt called for increased diversity through the representation of disability. It’s not much, but it’s a start. At this point, I’ll take what I can get.

I take courage from the fact that people are starting to enjoy diverse stories. Marvel’s “Black Panther” is being hailed as revolutionary, and the upcoming film “A Wrinkle in Time” — in which a black girl saves the universe — is highly anticipated. I like to think that by the time I finish my book, the world will be ready for it.

For now, I return again and again to the words of del Toro, upon receiving his Oscars for “The Shape of Water”: “This is a door. Kick it open and come in.”

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.