Improving ALS Representation in Movies: My Behind-the-Scenes Role

Ever since I was diagnosed with ALS in 2010, I’ve become sensitive to how ALS is represented in the movies. And I’ll admit to voicing my opinion about the topic in several of my past columns. So you can imagine my glee and pride when, six months ago, I had the opportunity to help move the ball forward in the evolution of ALS visibility.

It began with an email

Last December, I opened an email from John Rosman, a writer and director from Los Angeles. He explained that he was working on a movie script about “an exacting, meticulous agent who works for a shadowy government/corporate entity pursuing an evil person on the run. During the course of the film, she has to deal with the diagnosis of ALS.”

Well, that certainly caught my attention.

But dozens of red flags began waving in my brain. Exactly what kind of “ALS look” would the director portray?

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As I read on, he shared that he wanted to accurately portray the disease by casting someone who actually had to deal with it every day and was asking for my help. Of course, I agreed. This led to two months of lively correspondence that included us discussing everything from receiving a diagnosis, to types of symptoms, to how the mindsets of loss and hope evolve.

I even got to add my suggestions to a portion of the script, recommending “power chair” instead of “electric chair,” “caregiver” instead of “caretaker,” and so on.

Good news

By the time February rolled around, John announced he was ready to cast for the role. With permission from BioNews, the parent company of this website, I posted the casting call on the ALS News Today Forums. Within two weeks, John announced the good news that forum member and ALS patient Lisa Cross passed the audition and was chosen for the role. She was featured in a recent ALS News Today article written by Hawken Miller.

Is ALS visibility in the movies a trend? I hope so. For many years, mentions of ALS in mainstream Hollywood movies were pretty much nonexistent. In the past decade, movies with ALS as the central plot point have been produced, but the patients are usually portrayed by able-bodied actors. Now, we’re finally taking the first step toward real inclusion.

Let’s support increased visibility of ALS in the movies; it’s a grand way to spread ALS awareness throughout the world. And let’s look forward to a happy ending — a cure. Meanwhile, we can learn to live well while living with ALS.

Note: ALS 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.