-
Representation in Media
A few weeks ago, I wrote a column about disabled representation in the political arena. While representation is important, politics is, understandably, not everyone’s cup of tea. A few years ago, Five Feet Apart, a movie about a couple with CF was released. While the movie was one of the first about cystic fibrosis, it did receive criticism for its portrayal of the disease and the people who have it.
If it was up to you, what would a movie about cystic fibrosis look like? How would you more accurately portray life with cf?
-
3 Replies
-
Okay, I’ll be the first to say — I didn’t hate Five Feet Apart. Actually, while it was far from perfect, it’s probably been my favorite media portrayal of CF so far. The mistakes and exaggerations of certain things drive me a bit crazy, but I thought it did such a good job of portraying the emotional elements of CF, particularly when it comes to the unique friendships between us. I may be very biased when it comes to this because I’ve been fortunate enough to have become very good friends with other CFers at my center. I’ve heard people say (about the movie), “you’re not allowed to just wander the hospital with other patients at night” but I literally used to do that exact thing! I’ve also lost some of these friends and when Stella says, “He was my best friend and I never got to hug him,” I feel that deeply. All of this to say, something about Five Feet Apart just does it for me.
I’d like to see more media representation of CF in general. I’ve seen a few reality show contestants who have CF, but they are never shown doing treatments or anything and their story is always painted as being super inspirational; overcoming their illness in order to succeed. I’d love to see portrayals of the day-to-day life of someone with CF. We don’t need to “overcome” anything in order to succeed or be happy – we can do that while also living with and managing CF.
-
As in most things, the media does not get it quite right. For most media, it is a black and white issue, not a gray one. In today’s world, the distance of five feet is vague. Most ‘bugs’ such as pseudomonas. are not transmitted by aerosol, unless the person coughs directly upon you. Two CF patients kissing would be a high-risk adventure. The chances are they both have MRSA and resistant Pseudomonas.
CF patients need to have some quality of life, and restricting CFers from socializing with ‘people like me’ is a cruel thing. I have not seen any studies of patients with CF being sicker if they are around other people with CF. I am going to have to look at that.
-
We appreciated 5 Feet apart. Yes it was not perfect and it dealt with one particular couple. Others with CF may have different experiences. No two relationships are the same nor are experiences with CF the same. There is much that is common but we are all unique. So no one film or documentary will cover all experiences. But 5′ Apart did deal with some very important issues. The issues of distance apart, avoiding certain relationships, etc will change as modulators/correctors become more effective and more widely used.
Log in to reply.