Musings of a Marfan Mom

June 23, 2013
by marfmom
5 Comments

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 liz@positiveexposure.org.

June 21, 2013
by marfmom
0 comments

Friday Favorites

It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle

June 20, 2013
by marfmom
5 Comments

If These Walls Could Talk

My family moved when I was in 8th grade, to a quiet college town (technically a village) not far from where we had been living. My father had wanted to purchase the mouse-infested farmhouse on 28 acres that we’d been renting after our home sold too fast for us to have found something else, but this wasn’t possible, nor would my mother have stood for it. So, they came to buy this large, beautiful, fairly new home elsewhere in that town.

It was an open beam house, meaning that the skeleton of the house had been delivered by a crane and then the walls and roof were filled in around it. The neighbors on either side had boys my age and there were sheep behind us and a menagerie of animals down the street, which included a zebra, a musk ox, a peacock, and some llamas. My father had an obsession with trees and lined our property with rejects from the nursery that he then nursed back to health. There were neighborhood block parties and Christmas parties. It was a really beautiful place to live. Plus, I’ve always found the notion of small town life to be romantic, so by and large I enjoyed the village and our school as well.
house with open beams
After Dad died, I encouraged Mom to pursue her dream of a PhD. The housing market crashed at the same time, so instead of taking a loss on the house she rented it out. Now she’s graduated and is moving to the South to start work as a professor, and so the time has come to sell the house.

I had the opportunity to come back to my hometown for my high school band director’s retirement party last weekend. Because the house hasn’t sold yet, Mark, the boys and I stayed over in it. It was the first time my kids had ever been there and when I told M that we’d be staying in the home I grew up in, he responded with “Ooooo! There might be GHOSTS!” I’m not sure where he got that notion, but it wasn’t too far off.

In the past 5 or 6 years I’ve only been back to that home twice, both times just to retrieve items out of the one room we kept locked from the tenants for storage. Walking in the back door with the boys Friday night almost took my breath away. I have such mixed memories of living there, and they all came flooding back.

There were the good, like my 16th birthday party – my first with boys in attendance – where we played Twister in the basement and threw ice cubes at each other and someone toilet papered our huge walnut tree because they hadn’t been invited. Or the New Years Eve party in 2000 where at the stroke of midnight our computer in the loft really DID die from Y2K. Or the time a news crew came over to interview me about Marfan syndrome, and my dad made sure the crew took video of me playing piano and taking photographs, because I’m more than my diagnosis. It was the first time someone ever labeled me an advocate.

big tree

The walnut tree


There were the sad, like when my beloved cat Cupcake got cancer and I spent his last weeks feeding him cat food out of a syringe and laying next to him in the basement, wanting him to soak up all the love I had for him before he died. Or when my mother sat me down in the piano room and gave me the news my friend Anita had died suddenly and my 15 year old world was turned a little more upside down.


There are bad memories too, the kind that leave scars, like the weekend Mark and I had come home to meet with caterers about our wedding and instead I found myself on the living room couch, my mother explaining that my father was dead, while Mark waited in the laundry room, and then we stayed up late around the kitchen table with friends, making phone calls and trying to understand how we’d gotten to this place.

And as I gave M and J the grand tour, I realized how hard it is to reconcile those memories. The home will always be a little bit haunted to me, I suppose. It seems odd that soon another family will move in, oblivious to all the life-changing moments that happened to me within those walls.
boys in front of house
I texted Mom that night and told her I wished I could be the one to buy the house. That’s only partially true though. I think if I did, it would be hard to ever truly move past the sadness, and I deserve to be able to that. Maybe the house deserves that too.