Representation and the Need for More PHighters on Screen

I didn’t know what pulmonary hypertension was before my diagnosis. When I would tell friends and family about the disease, almost all of them learned about it for the first time through those conversations. As I began adjusting to life with PH, vigorously searching for stories of other people facing the same struggle, I started thinking about the power of storytelling, and those voices whose stories most often are represented in the broader media landscape. Books, television and film are powerful story-telling mechanisms that help shape people’s understanding of the world around them.

A new study from researchers at the University of Southern California examined 900 of the highest-grossing films between 2007 and 2016 to analyze the diversity in the narratives on the silver screen. The study, that looked at nearly 40,000 characters, found that representations of LGBT, people with disabilities, women, and minorities has not changed – or increased – over the last decade. The data is more than clear: Hollywood has an inclusion problem. Focusing on the 100 top-grossing films in 2016 alone, a mere 124 characters, or 2.7 percent, were depictions of people with disabilities. Now, this is .3 percentage points higher when compared to 2015, but paltry in the context of the larger study.

Of the 100 films in 2016, 38 of them, or nearly 40 percent, did not include a single character with a disability. The data also shows that for 2016, only a single film showed characters with disabilities properly portioned to the 18.7 percent of people in the U.S. living with some form of disability.

While I cannot guarantee it, I am almost certain that of those 124 characters, not one of them was a person living with PH. Perhaps it is too granular of a detail and I should be glad that any sort of characterization of a person struggling with a respiratory condition was shown on screen? But a lack of diversity – of any kind – is problematic because it helps perpetuate negative stereotypes, and incomplete or inaccurate depictions of people and communities.

It is especially troubling when film and other forms of entertainment are dominated by non-inclusive narratives that do not represent reality, because entertainment is a vehicle many people use to form their perception of the world. Film is, of course, an art form and there is some argument to be made that artists should not be overly prescriptive or forced into one frame when practicing their craft.

Storytelling is effective

Still, we all know how effective a good story can be. Consider the fight to protect the Affordable Care Act. People and organizations, including ADAPT – a community of disability rights activists – stormed the Capitol building in Washington, D.C., and district offices across the country to show how the ACA repeal would hurt them. It is because of advocates like them, who raised their voices and told their stories, that the Republican healthcare repeal efforts are now stalled.

Storytelling is like a mirror for our shared humanity. It shows us who we are and can reveal the good and the bad, or reflect darkness or light. It’s important to elevate lesser-heard voices into larger, more mainstream media channels because that can affect change and impact attitudes. Former Vice President Joe Biden, crediting the television show Will and Grace as something that helped shift people’s opinion on same-sex marriage in the U.S., is one example from the past decade. As a medium, television is often on the front lines of inclusion long before the film industry. It would be interesting to conduct a similar study for the television industry to compare results.

Last year, pulmonary hypertension received the primetime treatment on ABC’s Grey’s Anatomy in a storyline involving two doctors, and a man with PH traveling on a plane. The plane experiences some turbulence, and the man with PH experiences some severe breathing difficulties. (The man’s breathing improves after he takes a Viagra pill, but that’s a topic for a separate column.)

While it is not an example of a main or recurring character with this rare disease, it is the first time, to my knowledge, that a popular, primetime television show included a PH-related storyline. It is important to give credit where credit is due, because I can guarantee you that more people are aware of what I and others struggle with on a daily basis thanks to this Grey’s episode. This is a step in the right direction.

Bringing about heightened awareness or changing an established attitude or misperception takes time. A place to begin working toward greater inclusion and representation on screen is with the story and the storyteller. Are these narratives being written? Who is writing these narratives? Are the people in positions to bring these narratives to life a reflection of that desired inclusiveness?

While those of us with PH know well the visibility of the disease, it can be frustrating to live with what the outside world would consider an invisible disease or disability. People can’t see it if you’re not wearing a nasal cannula.

This is one reason I write to tell my story. To give visibility and to push the narrative-building process along – one column at a time.

Follow me on Twitter @mnaple

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.