The Problem With Trying to Make Illness 'Relatable' for Healthy People

In a recent interview the director of the upcoming film “Five Feet Apart,” Justin Baldoni, said that Cole Sprouse is a good actor to play a terminally ill teenager because his experience being a child actor forced him to grow up fast just like CFers do.

Yes, children with cystic fibrosis grow up fast. And yes, we are often “wise beyond our years,” but it is not because we spend a lot of time around adults. Most children spend time with adults, they’re children.

We grow up fast because we are sick and dying.

We grow up fast because we have no choice but to live our short lives faster than others.

Most of us will live only half of the average person’s lifespan and many of us will die much younger than that. To say that growing up as a child actor, along with all the wealth and privilege that is attached to that position, is comparable to cystic fibrosis is nothing but ignorant and offensive.

Later in the same interview, Justin told the interviewer that, “When I set out to make this film, my original hope was to make audiences leave with an appreciation for life,” and went on to say that he hoped the film would encourage people to do things like call their mom.

Terminally ill people are not alive just to make healthy people “appreciate their lives” more.

I am so happy when my struggles inspire the people around me to make healthier life choices — whatever “healthier” means to them. I also recognize that my healthy friends and family have learned to appreciate their healthy, able bodies during all the time they have spent helping me through my pain. But that’s not the same thing as treating our entire existence as a plot point for healthy people. From what I’ve seen, “Five Feet Apart” seeks to diminish our lives, our stories and our humanity just to create a “tragic” plot for able-bodied people to cry over and I refuse to accept their hypocrisy.

In addition, their most recent marketing campaign has been ignorantly focused on comparing the experience of cystic fibrosis to the feeling of being far apart from a loved one. For example:

Look, I am an international student from Canada who is currently going to school at Harvard University in the United States. I only get to see my family twice a year. I really miss them! I miss not being able to hug and be near my loved ones for months at a time, but that struggle is not comparable to the struggles I face having a terminal illness. Nothing about cystic fibrosis can be reduced to a metaphor. It is not relatable. You do not know what it is like to have had a terminal illness since you were born. You do not know what it is like to get sicker every day until you die or are lucky enough to receive a lung transplant. Terminal illness, and disability more generally, is not a comparable experience, and to say that being terminally ill is the same thing as not being able to hug your mom every day is unquestionably ableist.

To me, it seems like the creators of this film do not care about people with cystic fibrosis. They do not care about the cystic fibrosis community and our struggles. They have not listened to our voices and they will continue to ignore us. This film is not about uplifting us, it’s about making money from the healthy people who will walk out of the theater being so thankful that their lives aren’t as pitiful as ours.

This story originally appeared on 65 Pink Roses.

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