Back in October, the trailer for “Five Feet Apart” was released. I made a video of me reacting and offering commentary on the trailer. I also had a passing thought that maybe I would try to organize a private screening of it at a nearby theater since it would be be coming out right around the anniversary of Alyssa’s death. When I saw the trailer, I had immediate reservations. As far as I know, it wasn’t particularly well-known in the CF community that it was being produced. I learned that a few adults with CF and clinicians, including Claire Wineland (a well known CF advocate), had been consulted.
One thing about the CF community, however, is that it is a population of over 30,000 people in the US. CF is also a disease that affects every single person differently, which means our experiences with the disease are incredibly wide-reaching. That also means that our opinions about all kinds of issues related to CF are also wide-reaching: Many of us have strong opinions in both directions about the CFF, Vertex Pharmaceuticals, “inspiration porn,” and so, so much more. The reality, then, is that producing a film and not a documentary will inevitably not encapsulate a very wide spectrum of experiences and opinions in the community. If the film were to be produced well, it is possible that it could do great things for our community. On the other hand, if it were produced poorly, the community could be seriously adversely affected.
Most people are familiar with the expression “All press is good press.” That was the response I saw every time somebody rang the alarm bells about “Five Feet Apart.” It is true that people simply being familiar with CF will likely mean that more money will flood into the coffers of the CFF and other related foundations. Press and more money for foundations probably means better awareness and better drugs on the horizon. In the long run, that’s probably a good thing. With the wrong portrayal, all of this may still be true. With the wrong portrayal, however, our day-to-day lives could be negatively affected. Ableist language is already so common in our everyday language, especially when people talk to those of us with CF. People with CF are so commonly referred to as being “inspirational” for simply waking up and keeping ourselves alive. The damage from a poorly produced film could lead to us having to always stifle off pity when all most of us really want is empathy and to be treated like we are normal human beings because that’s exactly what we are, we just have shitty CFTR function.
These were my reservations about the film. Sure, we shouldn’t have strong opinions about something until we see it, but raising points early on in the press tour was the community’s effort to ensure that our voice was heard which, if the film is being produced for the “right” reasons, is exactly what our community deserves – our voices are what need to be at the front of this conversation. That includes the voices of those pissed off about the film, those that are ecstatic about it, those that refuse to see it, and it also includes all the voices in between!
So I suppose it is time to share my thoughts on the film. All in all, I was fine with it. It was clear that director Justin Baldoni took some creative liberties with the film, the most blatant being the hospital stay being portrayed as such a fun experience with the pool, the game room, the exercise room, the rooftop and the constant hang out sessions with others with CF (albeit six feet apart from one another). The benefit to the hospital being portrayed this way, however, is that our lives are interspersed with terrible and annoying shit – our treatments, medications, coughing, and all that – and fun lives being lived. We are humans, after all, with a full spectrum of emotions and experiences. The heartbreaking truth that CF interrupts our lives was palpable. I felt that best represented when Stella has to FaceTime her friends from the hospital when they are out partying and she’s confined to a small white-walled room. Stella, like Alyssa used to, made her hospital room her home and I loved that part. These hospital stays are psychologically damaging, so finding a way to make them feel like home is so important.
There were a few things that made me uncomfortable. At times, it felt like an advertisement for Afflovests and Vogmasks. Vogmasks aren’t exactly endorsed by the CFF, though they are very commonly used (my sister had them too). The Afflovest is used by some in the CF community, but I’m pretty certain Hill-Rom’s The Vest and their newly released Monarch portable vest are the gold standards. That isn’t a huge nitpick – chest physiotherapy and aerosolized medications were still featured prominently which is what is important – but product placement is a bit of a bad look in my opinion. I also don’t think the transplant process was portrayed nearly as detailed as it could have been, but it’s likely that wasn’t a focus point due to time constraints.
I do still feel a bit uncomfortable about it being a love story and how that is supposed to wholly represent the struggles of us not being able to be close to one another. In my view, people with CF don’t hate cross-contamination risks because it means we can’t date or hook up with one another. We hate cross-contamination risks because it impedes us from ever being able to have a true friendship or relationship with the very people that can most empathize with us. I was lucky growing up because I had my sister. While cross-contamination is a real risk for siblings, it wasn’t one that was going to prevent us from being siblings. I had Alyssa so I could talk to her about CF. Since she died, I’ve become closer with a lot of people in the CF community and those bonds are real. It does suck I can never hang out with them in person, but for different reasons than how the six-foot rule is portrayed in “Five Feet Apart.”
While the love story is obviously chosen to appeal to a young audience, I think one of the most important points of emphasis in the film was its sheer boldness in talking about mortality. I’ve been very open about my disillusionment with how CF steals life away from young people and how it forces us to think of such heavy topics at a young age. I’ve also been very open about my opinion on how CF has provided me with unique wisdom, experiences, a career, and a platform.
I don’t think there is a lot of benefit to going through the film and dissecting every little detail. In all movies, and even in documentaries, creative liberties are taken, so it’s genuinely impossible to get an entire picture of what the CF experience is like. The biggest point I will make is that this movie essentially shows the experiences of three teenagers with CF. Some people are meticulously compliant whereas others don’t quite see the point. Both experiences are valid. I want to emphasize that every single experience and opinion about the film is valid. It is totally okay that some are weirded out by it and it is okay that some are thrilled to finally have a decent portrayal of CF in pop culture. Ensuring our voices are elevated, respected, and included in the conversation is of the utmost importance. I also don’t want to neglect to mention the tone-deaf Instagram “influencer” ad campaign shared last weekend. I imagine that idea did not go through any committees or focus groups composed of adults with CF because it would have never been allowed to air.
I’m going to pay myself on the back for how well the private screening went. We sold 128 tickets which was far more than I expected. I was impressed with how smoothly it all went. Admittedly, I was anxious and I was worried that I would crumble once the film started. Memories of my sister’s hospitalizations flooded back. The talk about death, sickness, and transplants inundated me with memories that have been mostly cemented over in the last year. Afterwards though, I was composed as I gave thank you remarks to the audiences of both auditoriums. It was during these thank you remarks that I admitted my ulterior motive for the private screenings.
I want the conversation after “Five Feet Apart” to be led by those of us with CF in the CF community. I want us to speak as best as we can on behalf of all of those with CF and I want people in the community at large to recognize our autonomy and how these conversations should be led by us. Putting together the private screening was my attempt to begin that conversation. It was a way for me to get people to the theater so they could see some of the ugliness of CF and for me to then be able to be a voice that talks about the film. In that way, I’m so thankful for “Five Feet Apart” for giving me that opportunity.
In addition to all of this, I’m also thankful that a kind friend told the local news station WLWT about our private screening. I was interviewed and given the opportunity to talk about my sister, “Five Feet Apart,” my role in the community and more. It was awesome and brought even more awareness to all of the topics that I care so deeply about. And I’m not going to pretend that it didn’t feel a little cool to see myself on TV (Alyssa would have obviously been a prettier face, so sorry about that).
Where do we go from here? This is the really important point. While the film could have been better in some ways, it could have also been a hell of a lot worse. I’m thankful for how it was portrayed and how it will show a lot of people some of the ugliness that isn’t as obvious from how us advocates tend to talk about it. I hope people respect our autonomy, respect that we are human, and respect our wishes in how the future unfolds for our community.
I hope Justin Baldoni, Cole Sprouse, Haley Lu Richardson, Moises Arias, and co. continue to elevate the voices in our community so as to prove that the film is really about continuing to make the world a better place for every single person affected by CF. I hope our community is one that becomes more well-known and that we can continue to make leaps and bounds.
Thanks for reading, thanks for watching, and thanks for supporting. My sister would have had some opinions about the film, I’m sure, but I think the more important point is how excited she would be about our private screening and our family’s WLWT appearance. Thank you all for providing me a platform.