How to Make Movies About Disability More Accurate

The upcoming film “Don’t Worry, He Won’t Get Far on Foot” by director Gus Van Sant and starring Joaquin Phoenix is already stirring up controversy in many disabled communities. Depicting the life of the late quadriplegic cartoonist John Callahan, the film is just one of many movies and TV shows to feature an able-bodied actor playing a disabled character.

In 2016, The Washington Post reported that 95 percent of disabled characters on television today are played by able-bodied actors. That means that a mere 5 percent of disabled characters are portrayed by actors with disabilities.

In all honesty, I thought Hollywood would be past this by now. It’s 2018, and those of us in wheelchairs are still witnessing this kind of misrepresentation on film.

Imagine for a moment if the use of blackface to let white actors play black characters was as prevalent today as it was in the early 20th century. People everywhere would be outraged, and rightfully so. Nevertheless, it’s still quite common for able-bodied actors to portray disabled actors. We’ve seen this in films like “Me Before You” and “Avatar” and TV shows like “Glee” — it’s past time for this to change.

Here’s the thing: Just as race is a crucial element of a person’s identity, so is disability. I know that living with SMA my entire life has informed my perspective in every way, and if I were to be portrayed by an actor, I would want that actor to effectively portray life with SMA. It goes without saying that the best way to do that is through firsthand experience.

Granted, there are examples of able-bodied actors providing effective and accurate portrayals of disabled characters. I’m a big fan of the 2016 horror film “Hush,” wherein actress Kate Siegel plays a woman who is both deaf and mute. Siegel also co-wrote the film with its director and her husband Mike Flanagan. Though she has neither of her character’s disabilities in real life, she and Flanagan did extensive research throughout production and spoke with numerous individuals in deaf communities to make sure that the character they were creating was accurate. The results show in the final film, which I highly recommend streaming on Netflix.

Still, these instances should be few and far between. There are far too many qualified actors and actresses with disabilities who could be the ones cast in films like “Don’t Worry, He Won’t Get Far on Foot.” Those of us with disabilities want these films to be as authentic as possible.

Just look at the proper casting in television shows like “Speechless” or movies like “The Station Agent.” One of the best examples is “Breaking Bad,” which features RJ Mitte as the main character’s son Walter Jr. Like his character, Mitte has cerebral palsy in real life. Even though he was a supporting character on the show and the producers could have gotten away with casting an able-bodied actor, they wanted to make the portrayal as accurate as possible.

Depicting a character with a disability on-screen is not something to be taken lightly. Those of us in wheelchairs or with other disabilities want to see authenticity, and the best way to accomplish that is to put actors like Mitte and Micah Fowler in these roles. Let us be the ones to tell our stories.

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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.