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The Cost of Awareness in 'Five Feet Apart'

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Since the first trailer was released, “Five Feet Apart” has divided the cystic fibrosis community. The movie tells the story of two teenagers with cystic fibrosis (CF), a rare genetic disease that creates thick, sticky mucus throughout the body and damages the internal organs, especially the lungs. The two characters meet while staying in the hospital and fall in love, but must stay at least six feet away from each other at all times due to the risk of sharing the bacterial infections in their lungs. These risks are the reality of relationships between people living with CF, whether they be romantic partners, friends, siblings, or parents and children. Needless to say, turning an isolating experience shared by people in the CF community into the plot of a teen romance drama was bound to create controversy.

I am intimately familiar with the realities of the disease as the parent of a child with CF (although admittedly I know nothing about what it feels like to be the one living with it), and I also live with other chronic illnesses myself. As a result, I am constantly involved in conversations about ableism and the importance of centering the voices of people with disabilities. I am also queer, which means that I am acutely aware of the ways in which LGBTQIA people continue to be marginalized in our society. Each of these identities informs my viewing experience of “Five Feet Apart,” and while I’m sure others will address the movie from each of these perspectives (among others), I think it is valuable to discuss these three in one place.

[Note: As important as it is to consider intersecting identities, it is even more critical that we listen to people living with CF themselves in this case. If you’d like to hear a vigorous debate about the pros and cons of the movie between people with CF, check out episode #68, “Five Feet Apart Lead Up”, of the “Breathe In” podcast by Gunnar Esiason and the Salty Cysters.]

Ableism and Accuracy

Before we discuss the film itself, it is worth paying attention to the choices made by the marketing team in promoting the movie. Due to its premise, “Five Feet Apart” is in danger of receiving the same types of criticism that disability activists have made about other medical dramas and teen romances in the media. Had the marketing team learned from the mistakes of their predecessors, they wouldn’t have chosen to compare the feeling of isolation that comes with harboring deadly bacteria caused by a terminal illness with the loneliness able-bodied people feel when they live far away from their loved ones. There is no apt comparison, and to pretend otherwise is to trivialize the experiences of people with CF. It would have taken very little effort to realize how offensive this comparison is, yet no such effort was made, and the resulting promotional materials do not bode well for a film already in danger of playing into ableist tropes.

Fortunately, the creative team behind the movie itself made an effort to consult with people with CF. The producer and director of “Five Feet Apart,” Justin Baldoni (“My Last Days”), was inspired to create the movie by his friendship with Claire Wineland, a young woman with CF who passed away in 2018. If you’ve never heard of Ms. Wineland, you should visit her YouTube channel and non-profit foundation, the latter of which she founded when she was 13 years old. She was determined to live a life she could be proud of, no matter how short, and she faced death with a matter-of-fact attitude and a healthy dose of humor.

Claire consulted with the writers and producers before her passing in order to make sure “Five Feet Apart” was as realistic as possible. She explained what types of surgeries, breathing treatments, and medication regimens people with CF often go through. She taught the actors how to cough like a person with CF. She shared some ways that she found to make her many hours of daily treatments a little more fun, and those details were woven into the story. In addition, a retired nurse who specialized in CF care was on set for the entire filming of the movie.

The hard work paid off. Thankfully, “Five Feet Apart” is surprisingly accurate from a medical standpoint. There are a few artistic liberties taken that are at best unrealistic (for instance, it’s rather silly to take a long, romantic stroll through the hospital corridors without any type of face mask, yet still wear gloves while holding opposite ends of a pool cue). Furthermore, there’s the caveat that not all people with CF have the same disease progression at the same speed. In fact, most teenagers with CF these days are healthier than the characters in the film. But since we’re talking about a Hollywood movie, not a documentary, I do not expect clinical-level accuracy. Nor do I expect the experiences of three teenagers to represent the entire CF community.

Far more important than these minor inaccuracies are the ways that “Five Feet Apart” gets it right. The movie is accurate enough in the ways that count: it conveys the monotony of treatments, the challenge of weighing the risks and benefits when making medical decisions, the loneliness of missing out on life outside the hospital, and the fear that even your best efforts won’t be enough to save you from death when the next infection sets in. These are the truths of life with CF, and the lack of a surgical mask does not hinder that message.

Romance and Romanticization

There is truth to the criticism that the movie romanticizes life with CF. The characters are confined to the hospital for various reasons, so the hospital becomes the setting for everything from romantic dates to dinner parties with friends. As a result, the movie downplays the boredom and restrictions that come with breathing treatments, low lung function, IV antibiotics, tube feedings, and more. The obvious interpretation is that the writers and director chose to present CF through rose-tinted glasses, making the reality of a CF “tune-up” seem better than it actually is.

However, a valid interpretation of these scenes is that they reflect the ways that Claire Wineland shaped the story. She spent her life teaching others to reject the “victim mentality” and instead to live the fullest, most meaningful lives possible given their circumstances. She often decorated her hospital room for every admission the way a college freshman would decorate their dorm room. Posters, photos, strings of lights, and throw pillows transformed the sterile hospital room into a “home away from home.” On her YouTube channel, she shared the perks of being in the hospital, from endless room service to the irreplaceable relationships that are built there. She didn’t wait for life to begin when she was healthy enough to leave the hospital; she made the most of the home she had and found joy even in difficult circumstances.

Of course, not every person with CF will have this attitude or agree with everything Claire has said. Plenty of the media coverage on disability falls into the category of “inspiration porn,” which frames the stories of people with disabilities as inspirational, feel-good entertainment for able-bodied people, often to the detriment of the subject of the story. I think there can be healthy debate about the ways that some people with disabilities and chronic illnesses embrace their role as inspirational figures. The line between sharing the wisdom you’ve learned from life with a terminal illness and internalizing ableist messages that your life story must be told in a way that makes able-bodied people feel good can become very blurry.

Regardless of which side of that line you think Claire landed on, it is worth recalling her influence while watching “Five Feet Apart.” Perhaps portraying the hospital in the movie as a place full of possibility — of laughter and jokes, arguments and misunderstandings, smuggled fast food and romantic midnight swims, unimaginable loss and grief — isn’t an attempt to downplay the very real challenges and pain that people with CF face, but is instead inviting us to see the joy that is simultaneously present. Perhaps the ways in which “Five Feet Apart” makes the mundane seem magical is an invitation to look for the magic in our own lives. That seems like a message Claire would have supported, regardless of whether we call it inspiration porn or not.

Tropes and Passivity

Putting aside the questions of inherent ableism, medical accuracy, and the romanticization of a terminal illness, the plot of “Five Feet Apart” needs to be addressed in its own right. Unfortunately, the film’s primary failure is its plot. (The remainder of this contains spoilers.)

Firstly, “Five Feet Apart” is just the latest example of the “Bury Your Gays” trope. Poe, Stella’s Colombian, gay best friend and the third wheel of the hospital romance, dies abruptly near the end of the film. Even worse, he dies shortly after getting back together with the boyfriend he had pushed away for fear of being a burden, perpetuating the trope’s narrative that LGBTQ+ characters are unable to have “happy endings.”

The most egregious part of Poe’s death, however, is that it functions as a mere plot device in the straight characters’ story arcs. After his death, Stella lashes out and tears apart her meticulously organized medicine cart, a stark visual representation of how Poe’s death has shattered her illusion of control over her illness. Stella realizes that she is tired of living to do treatments rather than doing treatments to live, which causes her to drag Will, her love interest, on a reckless midnight stroll away from the hospital that ends with a near-fatal accident. Will then realizes he doesn’t want to watch Stella die, so he breaks up with her and tells her to “go live.” In short, Poe’s death sets off the chain of events that lead to the story’s climax and the straight characters’ epiphanies. His death has no consequence outside of its impact on the straight romantic leads (we never even see his boyfriend or his mother on screen, let alone their grief when he dies), because Stella and Will’s stories are the only ones that matter.

The second significant failure of the film’s plot lies in Stella’s lack of agency at the end of the story. Clearly, she is not doing well mentally after Poe’s death, and in the immediate aftermath, filled with grief and shock and anger, she ignores the opportunity for a lung transplant in order to have a couple more hours with Will. When her accident forces her hand and brings her back to the hospital, she still refuses to change her mind, no matter how much her doctors try to reason with her or her parents beg her. That is, until Will asks her to accept the new lungs. It is hard to believe that the girl who has spent years “living for treatments” suddenly won’t take the opportunity to live a longer and healthier life until the boy she met a month ago reminds her why she wanted to live in the first place.

Stella’s surgery is successful, and she wakes to find herself unable to speak because of the endotracheal tube in her throat that connects her new lungs to a ventilator. Through the haze of anesthesia and pain medications, combined with the very recent loss of a beloved friend, she listens to Will through a glass door as he explains why they need to break up (in the midst of a grand romantic gesture, no less). If Stella disagrees with his decision, she has no way to communicate that to Will. If she does choose to break up with him, she has no way to say her own goodbye. The only “choice” she makes is to close her eyes (at Will’s request) to make it easier for him to walk away. The tragedy at the end of the movie isn’t the tearful parting of star-crossed lovers; it’s that the character that obsessively controlled every aspect of her life at the beginning of the movie is reduced to a passive recipient of her boyfriend’s choices by the end.

It is truly disappointing that a movie filled with so much potential falls flat on the basis of plot. There are great moments in “Five Feet Apart” that convey some of the realities of life with a terminal illness: the difficult decisions that must be made by patients and doctors, the incomparable loneliness and isolation that come from spending so much of your life in the hospital, the special friendships that people develop with others who can relate to their experiences, and so on. However, these moments are overshadowed by a plot that relies heavily on damaging tropes concerning LGBTQIA people and women.

The Cost of Awareness

At the end of the day, the controversy within the CF community about “Five Feet Apart” boils down to different opinions about what constitutes awareness. Some people believe that any awareness is good awareness. They argue that if more people have heard the words “cystic fibrosis” and seen what what the disease looks like, it doesn’t matter what drew them in to learn more. Any faults can be forgiven, so long as the movie recruits more people to research the condition and join the fight against the disease. Others worry about the costs of awareness for the wrong reasons, or of the wrong things. They argue that an inaccurate representation of CF, or one that was created for profit and entertainment rather than the benefit of the people it represents, will do more harm than good.

For better or worse, “Five Feet Apart” will set the cultural narrative about CF for years to come. As a story about people with a terminal illness that is explicitly meant to inspire its able-bodied audience, it will be impossible for the film to escape accusations of ableism. The fact that the creators chose to rely heavily on homophobic and sexist tropes just adds insult to injury, especially for women and members of the LGBTQIA community with disabilities. These costs need to be weighed against the benefits that a movie like “Five Feet Apart” may bring to the CF community. Ideally, future creators will avoid these pitfalls altogether in future portrayals of life with CF, and we can put this debate to bed.

Originally published: April 8, 2019
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