Many of my friends within the community know what I'm talking about, but for those who don't, I'll try to sum it up quickly... over the weekend, a PR campaign came out regarding the upcoming film, Five Feet Apart, which features two people with cystic fibrosis who meet and fall in love during a hospital admission. Considering that individuals with CF are advised to stay six feet apart to avoid sharing potentially fatal infections with each other, this is a huge challenge. The movie is suppose to tell their story living with disease and how it feels to be kept at a distance from someone you love. Ultimately, the characters decide that in lieu of everything that cystic fibrosis has taken from them, they want to take something back, one foot of distance.. hence, five feet apart.
In an effort to promote the film before its release date is this Friday, March 15, six influencers on Instagram participated in paid advertisements and shared posts in which they said they can relate to the movie/individuals with CF and the distance that keeps us apart because they too experience distance from loved ones. Their brother/grandma/best friends/etc lives far away and they don't get to see them often. There was also a video released by a trendy media outlet that interviewed an active duty military service member and his wife sharing a similar message that they know how it feels because of their experiences with distance while he is deployed overseas.
The ads have since been removed, but you can read the text of them in Gunnar Esiason's blog here.
Because of the physical limitations on friendship between people with CF, there is a HUGE online community. There's all kinds of groups, forums and blogs. And there's literally thousands of people with CF who are social media friends with others who share their illness, despite never actually meeting in person. So when something happens on Facebook/Instagram/Twitter/etc... it spreads like a wildfire.
As someone who grew up in a family deeply rooted in military service, I also felt an incredibly difficult range of emotions from the video that was released. While it has never been my spouse, I have experienced the pain and anxiety that distance, related to the military, places on people and relationships. My brother served three combat deployments in the Marines Corps. I know how it feels to not talk to him for days or weeks at a time and I can vividly remember the nightmares I would have that we would get "that call" one day. My sister is currently serving in the U.S. Army and has been stationed overseas for the majority of the last seven years. I am only able to see her once a year, if we're lucky. And finally, my college sweetheart, the man I would undoubtedly consider the love of my life (thus far) also served in the Marines and of the two and a half years we were together, we only lived in the same state for 3 months. The rest of the time? He lived more than 5,000 miles away, so weekend trips to visit weren't exactly a frequent occurrence either. So trust me when I say, I get it.
There's been some efforts to start a viral hashtag to show how our community feels by sharing photos of what it really means to live with CF with the hashtag #CFCommunityUnites. While I absolutely agree with the message and applaud the individuals fronting that effort... to me, most of the posts still feels rooted in anger and dare I say it, tainted with this hate that MLK charged us to avoid. It doesn't feel warm. It doesn't feel friendly. It doesn't feel supportive. It just feels like more darkness, more hate, and more fuel on the fire. I personally have yet to find the light, love or hope in any of this. In my Instagram bio, I say that I am "unapologetically optimistic" but I have to be honest, I am really struggling to find the silver lining right now. I hope that we can come back from this. I want to believe that relationships can be repaired, trust can be rebuilt, feelings can be spared and understandings can be made... but I just don't know. I don't know how we can fix this. I am so overwhelmed by the negativity and I just want it to stop.
Understandably, this did not go over well with those living with CF and what I can only describe as a digital riot has engulfed the entire community, as far as social media is concerned.
Because of the physical limitations on friendship between people with CF, there is a HUGE online community. There's all kinds of groups, forums and blogs. And there's literally thousands of people with CF who are social media friends with others who share their illness, despite never actually meeting in person. So when something happens on Facebook/Instagram/Twitter/etc... it spreads like a wildfire.
I've been struggling to put into words exactly how I feel about it all because the truth is, I don't think I know how I feel. Hurt, angry, offended, discouraged, overwhelmed and disappointed are only a few of the feelings I have experienced in the last two days. But the thing is... it's not the campaign that's got me so upset. It's the reaction and interactions I'm seeing in the community as a result.
Let me be perfectly clear to start that I do believe this campaign was 100% tone deaf and insensitive to the CF Community. It should never have happened. The comparison that was suggested was naive and irrelevant. Forget comparing apples to oranges, this was trying to compare apples to the process of making orange juice.
My mother, the single most important person in my life and my absolute best friend in the world moved 3,000 miles away six months ago. It absolutely sucks and it hurts to not have her or other long-distance loved ones in my life on a day to day basis. But those feelings pale in comparison to the feelings of isolation I have as someone with CF, knowing that I can never safely be in physical contact with someone else with CF. No matter where my family lives, I can get in a car or on a plane and go see them. I can hug them. I can see them smile and hear them laugh in person, rather than just through a phone or computer screen. But as someone with CF, I have friends all around the world that I will never get to meet, never get to hug, never get to physically embrace in any way whatsoever. I will never get the chance to hear the little nuances of their laugh, the ones you just can't pick up on through a phone call. I will always be distance from them because the alternative is literally a matter of life and death for us both.
As someone who grew up in a family deeply rooted in military service, I also felt an incredibly difficult range of emotions from the video that was released. While it has never been my spouse, I have experienced the pain and anxiety that distance, related to the military, places on people and relationships. My brother served three combat deployments in the Marines Corps. I know how it feels to not talk to him for days or weeks at a time and I can vividly remember the nightmares I would have that we would get "that call" one day. My sister is currently serving in the U.S. Army and has been stationed overseas for the majority of the last seven years. I am only able to see her once a year, if we're lucky. And finally, my college sweetheart, the man I would undoubtedly consider the love of my life (thus far) also served in the Marines and of the two and a half years we were together, we only lived in the same state for 3 months. The rest of the time? He lived more than 5,000 miles away, so weekend trips to visit weren't exactly a frequent occurrence either. So trust me when I say, I get it.
Not seeing your loved one because they are in the military is very difficult and it comes with its own unique stressors and anxiety. Military long distance is different than any other kind of long distance. There's often more rules and regulations, there's usually limited contact and accessibility, and if there's any kind of combat situation involved, there's literally a threat to your loved one's life.
So to be completely honest, when I watched that video, I wasn't necessarily offended as a person with CF, but as a military loved one. Or maybe as both, I'm not sure. I just know that it was not appropriate for the campaign to suggest that the adversity that comes from military related long distance is like anything else, cause it's not. Just like the distance that comes from cystic fibrosis is like unlike anything else.
Additionally, the captions that were posted to Instagram could possibly have been chalked up to being an off the cuff idea that wasn't thought through. Someone was given the prompt about Five Feet Apart and without really paying attention or researching the story, thought "oh it's like a long distance relationship." Then quickly drafted some captions and sent them out to the influencers, who has no idea what CF was and just posted what they were paid to post. It's entirely possible that this was just a careless mistake because it was rushed and wasn't properly vetted. The video though? No. That took significant time and effort. I work in marketing and I know exactly how much effort goes into even a minute long video. They interviewed multiple people, added music and created motion graphics. There was easily dozens of people involved in producing that video and not a single one of them had the mindfulness or integrity to say "hey, is this really a good idea?". For this reason, I believe the video was far more offensive than the Instagram posts.
All this to say... I didn't care for the campaign and it caused quite an uproar. To be honest though, this film is already a controversy within the community.
On one side, you have people who are excited that their illness, an illness that the majority of their peers have never heard of, is going to have this much national attention. They think it'll bring awareness and foster a better understanding of what we go through on a day to day basis. On the other hand, you have people who are very concerned that this movie will have negative impact. They are worried that like most medical dramas, it won't be accurate and then we as a community will have to work even harder to educate others because we will have to correct the stigmas and misinformation portrayed on the screen.
But more significantly perhaps, many are worried that this movie victimizes people living with CF. They believe that it will invoke pity, that it romanticizes illness or that it exploits those living with an illness. Which I can agree with to an extent; the movie highlights a not so happy storyline. It's a tear jerker, no doubt. And it's not necessarily a story that represents the majority of those living with CF today. The movie shows two teenagers that have end stage disease progression. A decade or two ago, this was normal. Most people with CF were not living into adulthood and they were dying as teenagers. But today? Not so much. More than half the population is over the age of 18 and many of them are living very normal, successful, fulfilling lives. In fact, many are thriving through the adversity. There are many, many, MANY positive inspiring stories that could have been brought to the silver screen. As a marketing professional though... I understand why the filmmakers chose to narrow in on this more bittersweet story. As humans, we are often irrationally drawn to the sad stories more than the happy ones. Marketing is all about playing to people's emotions and whether we like it or not, sympathy is a very powerful emotion.
Overall, I haven't publicly put out my opinion on the movie cause I just didn't want to get into it. There was enough debating and I didn't feel like I had anything all that substantial to add to the conversation that someone else's blog hadn't already said. I absolutely respect and value both sides of the argument, especially those who have very valid concerns, but I personally have been cautiously optimistic and on the pro-Five Feet Apart side of the debate. I believe that just because the story told is not everyone's or even the majority of everyone's story, doesn't mean it's not valid. There are still people with CF who at seventeen years old, are having end of life conversations. There are still people with CF that live the majority of their lives inside a hospital and are too sick to maintain a normal lifestyle.
And, while this is a different conversation entirely... There are also people with CF who despite the risks, have befriended and then fallen in love with another individual with CF and their story, their love is valid. We cannot as a society, time and time again, support the LQTBQ community and their rights to love under the belief that #loveislove, then shun someone with CF who falls in love with someone "they weren't suppose to." I sincerely doubt that the CF couples out there in the world friended each other online with the intention of falling in love. They friended each other to be just that.. friends. Then, through shared experiences and emotions, they fell in love. It is 100% okay to not feel comfortable with the idea of two people with CF dating because of the risks, but I believe it is a very dangerous slope to project our personal preferences and comfort levels onto someone else's life choices to the point that it belittles the single most important and powerful experiences we have as humans, and that is who we fall in love with.
Finally, as a writer and someone who values creativity and personal expression more than nearly any other virtue, I firmly believe it was within the director, Justin Baldoni's right to tell the story that he believed in and that he felt would be moving and impactful.
And, while this is a different conversation entirely... There are also people with CF who despite the risks, have befriended and then fallen in love with another individual with CF and their story, their love is valid. We cannot as a society, time and time again, support the LQTBQ community and their rights to love under the belief that #loveislove, then shun someone with CF who falls in love with someone "they weren't suppose to." I sincerely doubt that the CF couples out there in the world friended each other online with the intention of falling in love. They friended each other to be just that.. friends. Then, through shared experiences and emotions, they fell in love. It is 100% okay to not feel comfortable with the idea of two people with CF dating because of the risks, but I believe it is a very dangerous slope to project our personal preferences and comfort levels onto someone else's life choices to the point that it belittles the single most important and powerful experiences we have as humans, and that is who we fall in love with.
Finally, as a writer and someone who values creativity and personal expression more than nearly any other virtue, I firmly believe it was within the director, Justin Baldoni's right to tell the story that he believed in and that he felt would be moving and impactful.
Back to the issue at hand though... more significant that how I or anyone else feels about the movie, what has bothered me the most over the last few days is the very hostile environment that has developed within the online community. What I have seen across multiple platforms of social media since Monday has honestly made me sick to my stomach.
I absolutely understand that people are hurt and angry at what happened. I understand the need to express those emotions. It's human nature when you're upset to just vent and get your feelings out. Hell, that's half the reason I'm writing this blog to begin with. What I can't understand though is why those feelings have to turn into personal attacks, passive aggressiveness, harassment and even threats towards others. Like... civility is a thing y'all. You can be upset without being cruel. I won't go into details because I don't want to put people on the spot. But throughout posts and comments, I've seen very harsh phrases and curses words that I don't think most people would say in a face to face conversation. I've seen posts and screenshots that include direct tags tearing down others. I've seen what I believe to be cyber bullying directed towards the production and PR teams, but also towards others in the CF community.
Pretty much everyone was offended by the campaign, that's obvious... but some people chose to look for the positive in the situation. They continued to defend Justin Baldoni and the production team behind the movie, saying that they likely were not involved with the publicity. Then there were some people who were justifiably very upheaved by the campaign and are holding Justin Baldoni and his team accountable. They want a public apology. Both sides are valid. But the tension between these two groups is unreal and I've seen comments from both sides that are tearing down the other. And that is not okay.
It's been really difficult for me to watch this all unfold. This movie had already divided us. But this campaign and the backlash coming from it is literally destroying the very foundation of our community. This movie is without a doubt the most controversial issue we have ever experienced. And I would say it has now become one of the most damaging from an internal perspective. I still believe in the vision that Justin had and I believe that from the outside, people will learn more about cystic fibrosis and it will have a positive impact.
But from where I'm standing? It feels likes a civil war. We as a community are already physically separated from each other and the only connection we had was this one built through social media and digital technology. As a child and as a teenager, I didn't know a single other person with cystic fibrosis. Not one. I knew there was others out there, but I didn't know them. I literally felt like I was the only person in the world who had to live with the monster that is cystic fibrosis. It wasn't until I was a freshman in college that I learned about the opportunities there were to get involved with the CF Foundation and from there, I began to "meet" others. I started joining the Facebook groups. I started listening to other adults share their story. I started connecting with real people who had real feelings and real experience just like me. I found a community that gave me strength and hope unlike anything I've ever had before. Those connections and this community are one of the single best support systems I have as an adult living with a terminal, debilitating illness. But this community is falling apart over Five Feet Apart.
It breaks my heart to see so much negativity and so much hate. The one thing I keep coming back to is the quote from Martin Luther King, Jr., which states:
"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."
There's been some efforts to start a viral hashtag to show how our community feels by sharing photos of what it really means to live with CF with the hashtag #CFCommunityUnites. While I absolutely agree with the message and applaud the individuals fronting that effort... to me, most of the posts still feels rooted in anger and dare I say it, tainted with this hate that MLK charged us to avoid. It doesn't feel warm. It doesn't feel friendly. It doesn't feel supportive. It just feels like more darkness, more hate, and more fuel on the fire. I personally have yet to find the light, love or hope in any of this. In my Instagram bio, I say that I am "unapologetically optimistic" but I have to be honest, I am really struggling to find the silver lining right now. I hope that we can come back from this. I want to believe that relationships can be repaired, trust can be rebuilt, feelings can be spared and understandings can be made... but I just don't know. I don't know how we can fix this. I am so overwhelmed by the negativity and I just want it to stop.
At the end of the day, this is not about whether you are or are not excited about Five Feet Apart. This is not about the tactless PR campaign that was released. This is about us, as individuals with cystic fibrosis, finding a way to weather this storm so that a week, a month or a year from now, we still have the support we need from our community, from the only people who can truly relate to us, to fight the actual villain in our lives. Because trust me, it is not this movie nor anyone involved its creation.
This movie is going to come out. It is going to have an impact, one way or another. But when the dust settles and as everyone else goes back to their own lives, we are still going to be here, trying to survive. We are still going to be irrevocably connected by the same fatal illness. And we are still going to need each other just as much as we need our medications.
We have to find a way to move passed this movie and everything that it does or doesn't represent. We have to find a way to put our differences aside and remember that we are stronger together. We have to find a way to rebuild our community, because right now, it's crumbling as we type.
This movie is going to come out. It is going to have an impact, one way or another. But when the dust settles and as everyone else goes back to their own lives, we are still going to be here, trying to survive. We are still going to be irrevocably connected by the same fatal illness. And we are still going to need each other just as much as we need our medications.
We have to find a way to move passed this movie and everything that it does or doesn't represent. We have to find a way to put our differences aside and remember that we are stronger together. We have to find a way to rebuild our community, because right now, it's crumbling as we type.
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