MS Representation in Pop Culture: What’s Wrong (and Right)

Characters with multiple sclerosis (MS) are uncommon in film, TV, or literature. When they are portrayed, the picture is often incomplete. And yet, they give me hope.

The importance of representation in pop culture is having a moment. When Halle Bailey was cast as Ariel in the live-action remake of “The Little Mermaid,” I got misty-eyed viewing the reaction videos of Little Girls of Color who finally saw themselves in that previously whitewashed ocean.

Or take the high school English classroom. As a teacher, I’m always thinking about which books will reflect back to my students their lived experiences or identities and which books will allow them to experience someone else’s reality, resulting in increased empathy, awareness, and knowledge. I know representation is important because I see the reactions of my students when they connect deeply with a character who shares their background or when they say that a certain book caused them to think about an issue they’d never considered.

As someone who lives with MS, I realized how infrequently I see characters with MS in pop culture — because I react so strongly when I do encounter them. Back in 2008, a review of international film databases found only 23 films produced between 1941 and 2006 in which MS was a theme. I don’t claim to be a math wiz, but that doesn’t seem to be a ton of films that feature MS. Even more alarming is the fact that 2008 is the most recent article I could find about this topic.

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MS representation in pop culture

MS is a fickle, unpredictable disease. We’re all snowflakes, unique, one-of-a-kind. As such, I can’t expect any standard depiction in the media of a character who has MS. The most famous, perhaps, is Martin Sheen’s character, President Josiah “Jed” Bartlet on “The West Wing,” who caused quite a stir when he finally revealed his diagnosis to the public. While I can’t imagine actually being president — the fatigue alone would do me in — I’m delighted to live in a world where someone else did imagine such a person in a position of leadership.

By contrast, I admit that my reaction is different when I’ve witnessed characters or people with MS who are not faring well, who have complications upon complications, and whose quality of life seems depressing. These include characters like:

• Amy Schumer’s dad, played by Colin Quinn in her movie “Trainwreck,” was placed in a care facility as his disease progressed.
• Mae’s father, Vinnie Holland, in Dave Eggers’ novel “The Circle,” struggles to get insurance and then constantly fights with the insurance company over coverage to treat his chronic pain.
• Adnan Syed’s attorney, in the first season of the “Serial” podcast, was disbarred for mishandling cases just a year after representing Syed. Tragically, she later claimed that her worsening MS caused her to slip up as an attorney.

When I see these portrayals, my initial response is something along the lines of, “But not all people experience MS this way!” I get defensive and want a healthier character — or at least I think I do until I realize my thoughts are really just my fears in disguise. I worry about new lesions, more lesions. I worry about the next big attack. I worry about losing my sight, my mobility, and my mind, and sometimes when I see these representations front and center, I wrongly center myself instead of empathizing with others.

Still, so few people know anything about MS (I didn’t know jack squat until I was diagnosed) that representation of any kind, whether extreme or not, is one way to bring about awareness in a society that knows little about MS. And hopefully, little by little, such awareness will not only lead to a more compassionate world but to greater funding for research and, hopefully, a cure.

People living with MS weigh in

I asked questions on social media about the importance of the representation of MS in pop culture. The respondents, all people who live with MS, said things that stopped me in my tracks. One person said that any time they see MS portrayed, “it’s someone who is ‘sickly.’” Sickly, of course, is relative. If your disease is advanced, then one person’s “sickly” is another person’s exactly right representation.

A second respondent made the point that “the hidden side of [MS] is never really depicted, like the fatigue, weakness in the bladder, memory loss, daily pain, etc.” I’ve noticed the same thing, and I wonder if it’s because these symptoms exist in a foggy no-man’s-land: They neither scream for attention on the outside like a deep angry wound nor are they within the experience of a healthy person who doesn’t have MS. Often, though, these invisible symptoms are the scariest and most persistent and can be debilitating.

On the other hand, a third person who watched Selma Blair on “Dancing with the Stars” said that her representation “makes me feel seen and like MS isn’t some fake disease no one gets.” This person’s thoughts resonate with me as I think of how often symptoms are dismissed, how often my fatigue is called into question as just “not enough sleep,” or something all people of a certain age feel. I reflect on the number of times I’ve experienced pain, numbness, and tingling, only to have others’ well-intentioned remarks sting when they suggest that it’s a pinched nerve, a pulled muscle, or an injury after overdoing a workout. Blair isn’t the first celebrity to speak publicly about her journey with MS, but she’s certainly raised the bar in terms of awareness, and that can only be a good thing.

Inspiring hope

Personally, I’m glad to see MS represented in the books I read and the shows I watch, regardless of whether the characters in them are portrayed as doing well or not. I’d like to one day not be so surprised when I do encounter these characters. Moreover, I’m grateful for celebrities and others with larger platforms than my own who shed light on this disease.

I’m sad whenever anyone is diagnosed — I hope we see a cure in our lifetime — but I’m grateful when Blair or other celebrities who live with MS share their experiences.

Moreover, I take comfort when I lose myself in the brilliant words of authors with MS, like Rita Dove or the late Joan Didion. My first love is words, and knowing that these powerhouses lived with MS and wrote the books they did gives me hope and courage to keep going and keep dreaming. Isn’t that one of the aims of art? I know we just want to be entertained sometimes, but other times, I go to art for inspiration, for release, and to birth something new of my own.

The takeaway

Seeing our lives on screens and in the pages of books gives me hope that even more art will begin to reflect our own lived experiences and introduce others to our often mysterious disease. Movies and books — whether they’re entertaining, informative, or escapist — have staying power. I am moved by art, and I know others are, too. I’d like to think that even if I didn’t have MS, I’d care deeply about Schumer’s dad, and I’d maybe be curious to find out more about MS. At the very least, MS would be on my radar, maybe for the first time, and that can only be a good thing. There’s room at the proverbial table for all of us — healthy, chronically sick, or otherwise. And I look forward to meeting a more diverse cast of characters in a novel or movie sometime soon.