Emily’s Thoughts on “Five Feet Apart”

“Have you seen the film? What do you think?” I’ve been encountering these questions everywhere I turn, in real life and on the internet.

They are asking about the film, “Five Feet Apart,” currently in theaters nationwide, which highlights the fictional story of two teenagers with Cystic Fibrosis (CF).

The answer to the first? No, not yet and I’ll explain why below.

The answer to the second? Well that’s a bit more complicated. Keep reading on to hear my thoughts with the explicit disclaimer that I have not yet seen the film. My reaction is based on interviews with the cast and director as well as the feedback I have heard from other trusted sources in the CF community.

I have not seen the film for a couple of reasons.

First, as many of you know, people with CF have bacteria in their lungs that are only transmissible to others with CF. They are not dangerous to healthy people without CF. I’m a firm believer that each person with CF has to develop his/her own approach to infection control. Some choose to withstand the risk because the benefits of interacting with other people with CF are well worth it. Others choose a more cautious approach and avoid contact with people with CF. And of course, there are tons of people who find themselves somewhere between those two ends of the spectrum or oscillating between them at different times in their lives. I 100% understand and respect all choices.

Personally, I choose to follow the cross infection guidelines strictly and do not go near others with CF. I will not even knowingly be in the same indoor or immediate outdoor space as others with CF. Again, I don’t impose my choices on others and I fully respect everyone else’s choices. This is just how I choose to handle cross infection.

So, no, I have not yet seen the film and one reason is because of infection control issues. I do not want to encounter another person with CF at the theater for fear that we could spread dangerous bacteria. Click here for a message about the film from people with CF as well as cross infection guidelines for movie-goers with CF.

But if I am being totally honest, there is another reason too. The movie covers really emotional, painful, raw issues that hit close to home. The thought of seeing it for the first time surrounded by a movie theater full of strangers overwhelms me. I am an introvert and I need time to process things alone.

I have encouraged the studio to allow people with CF to pay to livestream the video at home. I told them I thought it would be a wonderful way to show their understanding of and respect for the CF community. This was originally the brilliant idea of my CF friend, Melissa Soloman Shiffman! I have been told the studio supported the idea, but was having trouble figuring out the logistics. I will continue to push them to do this and encourage you to tweet at them and encourage them as well!

With all of that said, I must admit that I feel a little strange sharing my reaction to a movie that I haven’t even seen yet. As you read on, please remember that this is my reaction to the buzz around the film—the feedback I have heard, the reviews I have read, the interviews I have heard—and I want to be really forthcoming about the fact that I have not yet seen the actual film!

During the lead up to the release of the film, there was significant pushback from the CF community after a digital marketing company launched a social media campaign on Instagram where “influencers” were paid to publish posts comparing traveling or living far away from loved ones to the distance imposed by the CF cross infection guidelines. It was misguided, out of touch, and grossly inappropriate, clearly led by a digital marketing team that did not understand the gravity of what they were talking about. Many in the CF community, including me, were deeply offended and took to Facebook and Instagram to respond, sharing comments on the posts explaining why the comparison were offensive and urging the influencers to take down their posts. The campaign ended up being pulled with some of the influencers posting apologies before eventually pulling down their posts.

In general, when filmmakers portray illness in inauthentic, unrealistic ways merely as a tearjerker story line, it is objectifying and exploitative. That is clearly not the case with “Five Feet Apart.” From using various people with CF like CF Advocate Claire Wineland as advisors on the film to having a CF nurse on set verifying various medical treatments and facts, it is quite evident that the filmmakers and cast went to great lengths to immerse themselves in the CF world and portray the disease as realistically as possible. Their intentions were in the right place. Film director Justin Baldoni loved Claire Wineland deeply and wanted to do right by her and the CF community in a big way.

When I have heard Baldoni and the stars interviewed, I have been blown away by how educated they are about CF. They talk about it fluently, they get the big points right but also the smaller details too, and most importantly, they actively steer the interview towards CF awareness. I have seen them maneuver multiple interviews that way. It is very clear that their motive is to use the film as a platform to inform the world and spread awareness about CF and they take that mission very seriously. You can tell that it is authentic and that they care in a deep, personal way and that has been quite moving to me to see.

As others in the CF community have said, “Five Feet Apart” is not a CF documentary. It is not meant to represent CF with the truest accuracy, to cover every aspect of life with this disease, and frankly, I think that is okay. As filmmakers, their priority has to be to make a compelling movie that they can sell to a studio and that people want to see. Forbidden love sells and the film would do nothing for CF at all if it were not compelling enough to actually make people want to see it.

This is a story that is a lot bigger than CF. Representation is powerful. Diversity of representation is paramount.

Am I worried about romanticizing unsafe contact between people with CF? Yes? But (assuming my reaction to the portrayal of CF in the film is the same as many of my friends who have already seen it), do I think the ultimate impact of “Five Feet Apart” will be more positive for the CF community than negative? Yes. By opening the eyes and hearts of people who otherwise would not know or necessarily care about CF, I believe the awareness it will generate around CF and the lived, human experience of severe chronic illness among the general public will be transformative. Also, this is a story that is a lot bigger than CF. Representation is powerful. Diversity of representation is paramount. 

So that messy stream of thought is how I feel. A little worried, but mostly really touched by their commitment to tell the CF story (for all the right reasons) and impressed by their execution in doing it in a really educated, authentic, compassionate way. But again, I share all of this with the disclaimer that I have not actually seen the full movie yet—so all based on interviews, trailers, reviews, and what I have heard from lots of sources that I trust. My opinion is subject to change once I have seen the movie and if so, I will make sure to update all of you promptly!

2 Responses

  1. I saw the movie last night with my 13 year old daughter. I hadn’t planned on seeing but she was so touched by the movie that she wanted to take a friend and since my wife saw it with her the first time I decided to go. Going in I really knew very little about CF and was ignorant to the plight those affected by it. As I watched the movie I felt ignorant and small because I was learning about this disease because of 1. my 13 year old daughter and 2. in a movie that I really hadn’t planned on seeing. I am here today reading your blog because of it and I can say that I will be donating what I can to CF research (which I will be looking into as well after I finish this post). I’m not sure how closely the characters portray the real life dealings with CF in the movie is but if it’s even 10% accurate I commend you and and the families helping those with CF. Continue the fight Emily and know that a family outside of Cleveland, Ohio has been educated and will do what they can to support research to find better treatments and hopefully one day a cure.

    1. Emily's Entourage

      Thank you so much for sharing this comment. You gave us goosebumps! Sounds like you have quite an amazing daughter. Your story exemplifies the very purpose of the film — to open the eyes and hearts of people who otherwise would never have known anything about CF. Thank you for allowing your heart to be accessed, for carrying forward the mission of the film by continuing to dig and to research and to care. I can’t begin to tell you how moving your pledge to support CF research is. From the depths of our hearts, thank you and please stay connected. We’re honored to count you among our Entourage! If you send us your mailing address to admin [at] emilysentourage [dot] org, we’d love to send your daughter and EE tshirt.

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