Musings of a Marfan Mom

As many of you in the Marfan community have heard, the new Vince Vaughn/Owen Wilson movie – The Internship – contains a joke about Marfan. The National Marfan Foundation released a statement to “urge the producers of The Internship and the actors to try to right this situation by working with us to raise awareness of the signs of Marfan syndrome and save lives because half of the people who have this condition are not diagnosed.” Soon everyone was discussing what was said in the movie…without actually knowing what was said.

At one point, Will Ferrel, kind of yelling at Vince Vaughn, says: “C’mon Marfan syndrome. You know Marfan. Big man’s-disease. Giant killer. ”

Tasteless? Sure. Funny? Not really.

I’m not going to tell you whether or not you should feel offended by this exchange, or that you’re wrong for whatever feelings you have. What I do want you to consider is your response.

As a community, we have a choice now. We can stomp our feet and scream “I can’t believe they did this! What cruel, mean, thoughtless writers/actors/producers! Boycott the movie!” That’s certainly the gut response, and one that many people would understand.

Or, we can decide to ignore the negative and entirely reframe the conversation. I call this taking a page out of the Mormon church’s book. The Book of Mormon musical doesn’t exactly portray the church in a positive (or accurate) light. Many members of the church were offended and angry. How did church headquarters respond? They took out ads in the playbill and changed the course of the conversation to talk about what the church believes and how people can learn more.

Let’s work this to our advantage. A major movie used Marfan as a punchline. This means we’ve been doing a good enough job with awareness that the writers thought audiences would get the joke. So it wasn’t how we might have wanted Marfan to hit the mainstream media. Being angry isn’t going to hurt the actors, writers, or producers, but it might make us look bad. Instead, let’s use this as a way to reach even more people. What about Facebook statuses that say, “Hey, did you catch the mention of Marfan in the new movie The Internship? Marfan isn’t just about being tall though, it’s actually a life-threatening genetic disorder that affects me/my child/my partner/my bff. Learn more at marfan.org!” Or, you could call your local paper and let them know about the mention in the movie, and offer to be interviewed to show what life with Marfan is like. I know the local paper where I grew up used guest editorialists occasionally, and I published an article about Marfan that way.

People will forget Will Ferrell’s line, but they’ll remember what we had to say about it. Let’s make sure we’re poised and ready to keep doing what we do best: saving lives.