I crave more on-screen disability, rare disease representation

My husband, Dave, and I love to watch the TV show “Top Chef,” which we stream on Peacock on Friday nights. It’s a little treat to end the work week. We’re usually eating dinner as we watch — not the most mindful practice, but enjoyable. Our humble dinners are sawdust compared to the meals prepared on the show.

For those who have never seen it, “Top Chef” is a reality show with competing chefs. The competition starts with over a dozen chefs and ends with a single winner who earns significant prizes and prestige.

In this season, filmed last year in Wisconsin, one chef, Dan Jacobs, has a rare condition called Kennedy’s disease. He uses a cane, and his fine motor skills seem to be a little impaired. That is what we see. When I Googled it, I found what we don’t see. It is neurological and degenerative, like my disease, Friedreich’s ataxia (FA). Unlike FA, it’s typically an adult-onset disease and has a much slower rate of degeneration.

Recommended Reading

April 17, 2024 Columns by Matthew Lafleur

FA advocate Kyle Bryant rides again for Team FARA and our community

In one of the episodes, Jacobs discloses that he has the disease. The minute he said that, I became a “Dan fan.” I’m usually a big fan of the representation of rare diseases and disability in the arts and in the media. It is hard for me to put my finger on how it makes me feel, but I’ll try.

I feel seen, as though people like me with disease and disability are contributing members of society — because we are. The National Institutes of Health estimates that 25-30 million Americans have a rare disease. The U.S. Census Bureau estimates there are about 42.5 million people with disabilities. That’s a lot of us. It would be so amazing if we were proportionally represented on screen!

I also feel validated, as though my struggles and everyday joys and accomplishments matter. It is challenging to have a disease or disability, but it doesn’t mean life is miserable.

My friends Kyle Bryant and Sean Baumstark (who is a former Friedreich’s Ataxia News columnist), made a documentary film about their adventures in the Race Across America, a cycling race from the West Coast to the East Coast of the United States — about 3,000 miles. “The Ataxian” tells the story of the ride, and of FA as well. I couldn’t have felt more seen than when I watched it.

Sometimes they get it wrong

You may have noticed that I said I’m usually a big fan of seeing people like me on screen. Sometimes portrayals by actors are inaccurate. I recently watched “The Upside,” a movie starring Bryan Cranston and Kevin Hart. I didn’t hate it, and there were some laughable moments. However, the main theme was that the disabled person, played by Cranston, was miserable and reclusive until he was “saved” by Hart’s fumbling, yet kind character.

Able-bodied people “saving” disabled folks is a common theme on screen. It is portrayed as though we miserable disabled people need an able-bodied person to feel joy. Guess what? Able-bodied people can be miserable, too!

I find that “Crip Camp,” a documentary on Netflix with an overarching theme of people with disabilities helping each other be happy and fulfilled, rings much truer than the able-bodied saviors we often see.

Of course, in reality shows like “Top Chef,” there aren’t actors, although I know that some of what happens on those shows is contrived. But ultimately, they are themselves. In Jacobs’ case, he is a successful chef and restaurant owner who wears funky glasses.

As I write this, Jacobs is still going strong among the seven chefs left in the competition this season. So, this Friday, I will be eating my humble dinner and rooting for Dan.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.