Revisiting the Need for Better Disability Representation in TV and Media

Why it's important for the PH community to see their stories on screen

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by Mike Naple |

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As we trade swimsuits for sweaters in preparation for the fall season, many of us look forward to the premiere of new television shows and the return of our old favorites.

Growing up, I would devour entertainment magazines dedicated to previewing the fall television and film lineups like popcorn. I loved diving into new shows, getting to know the characters, and watching their story arcs develop from one season to the next. When I was in high school, there wasn’t a Warner Bros. teen soap too sudsy for me to watch, and I couldn’t wait to dissect the latest episode the next day with my friends in biology class.

As a teenager with a stutter and scoliosis, I have to admit that I didn’t always look for representation in the shows I watched. While some of that mindset certainly reflects a sense of white male privilege, I also never imagined that anybody would watch, let alone write, a television show centered around a teen with a curved spine and a speech impediment.

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Humans are storytellers. We try to make sense of the world around us through storytelling devices and narrative. When I was diagnosed with pulmonary hypertension (PH) in 2016, I didn’t know anything about this rare lung disease that had contributed to the low-grade heart failure I’d been experiencing for months. Upon my release from the hospital, it wasn’t enough for me to have the treatment plan from my doctors as my only road map to navigate this new life. I had crash-landed on a new planet, where I was desperate to make contact and learn if there were others out there like me.

After some brief Googling about life expectancy — yes, I know we’re told not to fire up the search engine — I did find stories and first-person testimonials from others diagnosed with PH. Many of these people were also living beyond the three-to-five-year window post-diagnosis. Reading these stories offered a glimmer of hope as I began putting the PH puzzle pieces together.

Those stories offered me a measure of representation and reminded me why we seek out stories on screen and across different mediums that reflect and share our experiences. With streaming platforms like Hulu, HBO Max, Peacock, and Netflix, there is no shortage of scripted and reality television content, and much of it is available at our fingertips with the swipe of a screen. However, more content doesn’t exactly translate to more narratives featuring disabled or chronically ill characters or storylines.

Recent research and insights from Nielsen, a leading company that measures audience engagement and viewer behavior across different media platforms, suggest much more needs to be done to close the inclusion gap in media for people with disabilities. According to Nielsen, nearly 50% of disabled people surveyed feel their community is underrepresented in television content. Furthermore, when it comes to disability representation, “24% see no difference in relevant representation from platform to platform. There is also no single genre that stands out as one that best showcases disability representation.”

For one of my first Pulmonary Hypertension News columns, I wrote about representation on screen. I mentioned a study from the University of Southern California (USC) that analyzed diversity and representation in the highest grossing films from 2007 to 2016, writing: “Focusing on the 100 top-grossing films in 2016 alone, a mere 124 characters, or 2.7 percent, were depictions of people with disabilities.”

In 2020, USC released another iteration of the study, analyzing 1,300 films from 2007 to 2019. Looking at 2019 as a single year, the report stated, “Only 2.3% of all speaking characters across the 100 top-grossing films of 2019 were depicted with a disability.” In examining films released between 2015 and 2019, researchers also noted, “No meaningful change was observed in the percentage of speaking characters with disabilities.”

While the research doesn’t suggest a ton of progress has been made to improve disability inclusion in film since I first wrote about the topic in 2017, feature films still account for more disability-themed content (59%) compared with television series (17.5%) and other mediums, according to Nielsen.

I had been pleasantly surprised to see PH appear as a plot point in prior episodes of “Grey’s Anatomy” and “The West Wing.” However, those examples place PH in the service of advancing main character narratives. I want to see a higher level of representation where disabled and chronically ill characters move into the spotlight, like in Ryan O’Connell’s now canceled series, “Special.”

Twenty-six percent of U.S. adults are disabled. Our lives and experiences are ripe for the screen, with just as much nuance and intrigue as the lives of abled people.

If I want to see more PHighters on screen, I suppose I’ll have to write the pilot episode myself.

Follow Mike on Twitter: @mnaple.

Note: Pulmonary Hypertension 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 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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