Musings of a Marfan Mom

Marfan Syndrome & The Internship: How We Choose to Handle a Negative Media Portrayal

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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.

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12 Comments

  1. Perfect response! I’ll be sharing this blog post with my friends and do what I can to change the discussion!

    We’ve come along way from working diligently to get Doctors educated about our disease. It is sort of refreshing to see that tasteless jokes about us are now an issue! Let’s use this as a chance to further educate people!!

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  2. As always, you have a way with words!

    Keep up the good work!ing people call burn patients ugly or “Crispy Chicken Nugget” all the time) and

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    marfmom Reply:

    Thanks! It does look like some of your comment got cut off though…?

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  3. Well, as a professional stand up comedian who has had 2 collapsed lungs, aortic anyerism, valve replacement, terrible knees, lower back,and ankles who also has a 6 year old girl recently diagnosed wIth Marfan’s, I would disagree with your outlook on humor. It seems instead of embracing your uniqueness, you have decided to take the ever popular “I’m a victim” stance. One line in an entire movie wrecked your day enough to start a whining session. ” Feel sorry for us…we’re sick and different” Blah de fricken n Blah. I joke about Marf a lot. I have chose to portray myself as a hero of this instead of a victim. I inform more people of Marfans through comedy than playing a victim ever could. People have come up to me after shows and have shown me body parts and asked me if I thought they might have it. Most people have never heard of it so why would you not embrace any national mention of Marfans, no matter the context. We don’t need a rally. We don’t need to have a parade everytime. What we need is exposure in any form. Complaining to other people with Marf isn’t going to do that. On a side note, complaining about a sickness or playing the victim, can only keep you sick. I guess that’s why it has always been said “Laughter is the best medicine”.

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    marfmom Reply:

    I actually was not offended by what was said. I’m not sure where in this post I said that I was? Nor was I encouraging people to take a victim stance; that’s what I was discouraging. I think when we’re in the news, for better or for worse, we should use it to our advantage. I hope that you take some time to explore the blog and read other posts…I write a lot about “Marfan pride” and loving who we are.

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  4. Perfectly said Maya. My first thought when I heard there was a distasteful comment was “Wow your kidding they really mentioned Marfans in a big movie. I’ve been trying to find the quote ever since. Every joke in the movie is probably distasteful. I think you totally hit the nail on the head with this post.

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    marfmom Reply:

    Raunchy, edgy humor is what these comedians are known for. Not really my thing, but comedy is as varied as anything else. I’m in the camp that I think it’s cool that we were mentioned, because it means more and more people are aware and it opens the door for us to talk about Marfan even more, but I do understand why some in our community were hurt by what was said, and I respect that.

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  5. The Marfan Foundation is looking at this as an opportunity to educate more people about Marfan syndrome. How you look at the comment in the movie really depends on your personal situation with the condition – maybe you have a teenager struggling with it or lost a family member. It’s hard to fathom how you’d feel if you were in that situation and heard the Will Ferrell character’s comments. We know we can’t make any progress by whining. But we are proactively seeking accurate media coverage and many of our members are stepping up to offer sharing their story. If we can make some inroads in Hollywood as a result, that can only help awareness even more in the future.

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  6. Bravo Maya! Thank you for your clear thinking.

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  7. Great perspective, Maya. I totally agree that this is a golden opportunity to use “bad” media to your advantage. I know I’ll certainly be more aware after reading this to use comments about the movie as a learning opportunity. Thank you!

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  9. Nah, it was funny. Everyone gets made fun of, quit being so sensitive.

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