Finally, some positive disability representation in a new movie

Amid the busyness of last month’s ALS awareness activities, I almost missed learning about the debut of a special movie that I was quite involved with during its early stages.

My friend’s email opened with, “Were your ears ringing last night?” That made me sit up straight. She told me she had participated in the ALS Therapy Development Institute’s third annual ALS Film Fest and said, “You got a very big shoutout last night.”

Turns out John Rosman, the screenwriter and director of the movie “New Life,” had been invited to the film fest to discuss his movie and its ALS connections. My friend told me that during the discussion, he mentioned how in 2022, during his research, he found my column on ALS News Today and asked me to give feedback on the sections of his script that dealt with ALS. Then, he asked me to assist in recruiting an ALS patient for a supporting role in the film. I wrote about my interesting experiences in the column “Improving ALS Representation in Movies: My Behind-the-Scenes Role.”

Fast forward to 2024, and Rosman’s film has finally wrapped up production and is now available for viewing on Amazon Prime Video.

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What’s the movie about?

I won’t reveal the plot twists and turns, but here’s a quick synopsis: The story is a classic thriller/horror setup. It opens with a woman named Jessie on the run, desperate to cross the Canadian border to escape her past. On her tail is Elsa, a resourceful agent whose diagnosis of ALS leaves her one step behind. She hides her condition from her colleagues and hopes that bringing Jessie in might help prove she can still do her job. As the women’s lives intertwine, Elsa forges ahead despite the progression of her ALS symptoms.

I remember Rosman telling me he was taking great care to make sure the film’s depiction of ALS was accurate and respectful. Watching the final product, I felt he certainly hit the mark.

Why does it matter?

I’ve always been interested in how disabilities are represented in media — especially my disability. I’ve witnessed the evolution of no mention of ALS at all to ALS being a plot point, to able-bodied actors portraying an ALS patient, to now seeing ALS be a part of the storyline along with an actual ALS patient in a supporting role. Bravo!

There’s also value in Prime being the platform where viewers can find the film. The exposure to a larger audience means we’ll have greater awareness of ALS and the challenges we patients experience while trying to manage our symptoms and continue our daily tasks.

ALS visibility in the media is moving in the right direction. I encourage you to add “New Life” to your watchlist and, if you like it, give it a thumbs-up rating.

While you’re at it, give yourself a thumbs-up. We who live with ALS are the stars in our own life movies. We live with family, friends, and caregivers who are our supporting cast. Let’s make it an inspiring and happy ending, because I believe we can 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.