Musings of a Marfan Mom

My Thoughts on Positive Exposure


Many of you in the Marfan community have heard about (or met!) Rick Guidotti and his organization Positive Exposure. Rick got some excellent national recognition when Nancy Snyderman did a piece about him for Rock Center With Brian Williams a few weeks ago.

I’ve had a few non-Marf friends ask me what I think about Rick’s work, both as a person with Marfan syndrome and as a public health professional. It’s also been interesting to read other people’s reactions online who have no stake in what Positive Exposure does at all (most of which has been overwhelmingly positive). I thought I’d take a moment here to give my opinion.

For those not familiar with Rick and Positive Exposure, you can read a great summary here. In short, here’s how it came to be. Rick was a successful high fashion photographer. At one point he was asked to photograph a woman with a genetic difference and in trying to research her condition, came across really dehumanizing photos in medical textbooks. You know the kind…where the person is naked except for a black bar over the eyes and maybe also their genitals. (Older Marfs can tell you stories about being made to parade naked through groups of doctors for inspection.) So, Rick decided to leave the world of couture and create an organization dedicated to showing the real beauty in people with genetic differences. Positive Exposure particularly focuses on changing medical textbook photos and Rick lectures at medical schools. He also has a high school blogging program called Pearl’s.

For those of us in the disability community, we can be sensitive to what one author calls “inspiration candy.” Those are the type of “feel good” stories that focus on people with disabilities being an inspiration to those around them, or otherwise place them on a pedestal. You’ve probably read many of them online, maybe shared some on social networks. They’re graphics like “Kids with Autism are God’s Angels” or videos such as “Look at how this amazing person with cerebral palsy learned how to walk!” I don’t mean that it isn’t great that the person accomplished that, and I think my autistic son CAN be angelic SOMEtimes, but we’re all also just regular people who are living our imperfect lives, and not existing to serve the purpose of inspiring those around us.

When seeing a video like the one on Rock Center, or reading about what Rick does, I can see how it might be easy to mistake his work for inspiration candy. The media loves to talk about disability in a certain way, and it could sound like Rick was being praised for being oh-so-kind-to-these-pitiful-people.

Let me assure you, this is NOT the case.

Rick has been photographing the National Marfan Foundation conference for years. I run the teen program and I’ve gotten to know him and watch him work with “my” teens. This isn’t about showing the “inner beauty” of people with disabilities. This is about showing the outer, actual beauty of people whose genetic disorders alter their looks from what is typically defined as beautiful. This isn’t redefining beauty, it’s expanding beauty.

I watch the faces of the teens change when Rick is photographing them. They light up, they stand a little taller. He brings out their self-confidence and the pictures show them at their best. I remember a few years ago we took the teens on a field trip that included a swimming pool. I was about halfway through my pregnancy with J and wearing this maternity tankini. I felt like a whale. Rick photographed me in my swimsuit. The pictures were lovely, I looked good, and I wish I could find a copy now to show J.

So, I think the work Rick does on even a 1:1 level is worth it.

But, the greater mission of Positive Exposure is vital. Sure, Rick’s an able-bodied, genetically-typical person advocating for people with genetic differences (not all of whom also have a disability, by the way). The truth is though, we need allies. Every minority group needs allies to make significant change. I am proud to have Rick and Positive Exposure as partners in bringing about change in how the medical profession sees and discusses those of us with genetic differences.

You can learn more about Positive Exposure from their website, Facebook page, and Twitter. Also, according to their FB page, you can bring Positive Exposure to your community. Host a positive Exposure Exhibit and learn about the Pearl’s Project and Positive Exposure lecture series. Contact them at

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  1. Thanks for reminding me about Positive Exposure. He does incredible work. As a photographer myself, I’ve always marvelled at not only his technical ability as a photographer but his artistic ability in truly showing the beauty of his subjects.

    On a different note, your discussion of “inspiration candy” allow me an opportunity to vent; for which I thank you! The bit of inspiration candy that makes me want to scream, rend my garments, and pull out my hair and slap somebody is:

    “This is proof that you truly can do anything you put your mind to!”

    While I love hearing about folks overcoming adversity, I am amazed that this phrase and others like it are used! Because, no matter how hard I try, there are simply things I will NEVER be able to do! I could probably come up with a list of a hundred or more but the folks who read your blog are certainly aware of what those of us with Marfan’s can and cannot do. So I won’t belabor my point anymore. I think you get it. Sorry to hijack your blog. Thanks for the opportunity to vent!

    Be well my friend!


    marfmom Reply:

    Oooo that’s a good one! And to piggyback on that, I think the general, more or less uninformed (through no fault of their own…how would you know if it’s not a part of your life?), public looks at some of these stories and thinks they do or should apply to everyone with that diagnosis. Just because autistic person learns to use an AAC doesn’t mean that all will, or just because one person with Marfan decided to play basketball doesn’t mean that all should.


  2. This is such an amazing story. I can’t tell you how many times I’ve heard you’re so tall but you’re pretty. (The jury is out on how tall I am…one doc tells me 6’4 another says 6’6)….what the heck does that mean…I’m pretty despite being tall? I struggled so much with this as a teenager…I wish this had been around then…I’m glad that age did bring wisdom (at least I like to think so) and I’m finally comfortable in my own skin..


    marfmom Reply:

    I hear you! I remember in middle school we’d have these exercises at church, school, girl scouts, wherever, where everyone would have to write “positive” things on your card. Like, each kid would have a card with their name on it and they’d pass it around for everyone else to write on. Mine always said “you’re tall” multiple times, while other people’s had character traits or things like “beautiful” on theirs. I felt like my height (I’m 6’1”) was all anyone could see, and not in a good way. But like you said, age can bring a change of perspective. I love all the programs for youth that agencies like this and the Marfan Foundation have now!


  3. Thank you for bringing this project to my attention! It sounds like the work Rick does is really benefiting people on a real, personal level as well as spreading awareness and working to broaden the (extremely narrow) societal view of beauty.


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