Friday, June 7, 2013

The Absent Minded Blogger

So remember that one time I wrote that one blog post that seemingly had no point or purpose or meaning beyond my senseless ramblings? What?? You need more clarification? Okay it was this one about when I first realized something was different about Ella while I was trying to take newborn pictures of her. I couldn't seem to capture her expression, her essence, her beauty and it bothered me that something just seemed different. At the time I wrote that I thought I did have a point to that post, but by the time I got to writing the end I had completely forgotten what that purpose was and tricked myself into believing there really never was a purpose and that I should just post it as it was. Well.. turns out there was a purpose and as luck would have it I actually remembered what it was. A mere five months later, but better late than never, right? I'm claiming pregnancy brain..

See, there's something I've never told you about Ella before. Something I've been holding back.. Her and Cindy Crawford have much more in common than those famous brunette waves and absolutely stunning eyelashes. (Ella's are real though.. just sayin) They have both been photographed by the same famous world renowned photographer Rick Guidotti. Yup.

Okay.. this one was actually taken by my friend Staci but I know Rick took one very similar to it..
I just couldn't find it right now. Thanks Staci!
When we went to Chicago last summer to the CdLS National Conference there was a photographer there taking pictures of all the kids and their families. Here is his story (taken from his website).
Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti.  Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure. It has always been about beauty for Rick.  “In fashion I was always frustrated because I was told who I had to photograph.  I was always told who was beautiful.”   It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path?  How do you get people to see those with differences not as victims, but kids and people first and foremost?  The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.
The photos give people the permission to see beauty and interpret beauty in their own right.  Not to see beauty that is dictated by industry’s ideas of what is acceptable.  What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.
Wow. After hearing his story I was completely humbled that someone who had no apparent personal connection with someone who was "different" could see something just by standing on a street corner that I myself, who DID have a very personal connection, could not. After meeting Rick at Conference I have the utmost respect for him and the work that he does. I am amazed by how he effortlessly captures beauty in all forms, not just the forms society dictates. He has a special way of using his unique personality to bring a spark to our kids' eyes and make them feel like too many others don't--just like a regular kid. And I love his mission to bring a human face to these genetic conditions. I know I'm not alone among my SN friends in recounting our D-Day (Diagnosis Day), when our geneticist pulled out her giant book of genetic defects and showed me pictures of the syndrome she thought Ella had (not CdLS at that time). The pictures were TERRIBLE! As if a mother couldn't be more scared for her child and their possible future at that time, the pictures doctors show most of us look as if they were taken at least 50 years ago of children in undesirable positions and situations and give absolutely no hope for the life ahead of them. Another source wrote, "
Positive Exposure's challenge to the way the medical community sees genetic differences, and their goal of replacing the dehumanizing images from medical textbooks with photographs that speak to/represent the person, not just the condition. Joanna Rudnick states: "It's a remove the "black bar" movement and Rick won't be satisfied until a new parent can Google a child's condition and see one of his photographs - of humanity of motion of childhood - rather than a disassociated body with a black bar masking and shaming their identity."
Exactly. And the reason I was reminded of what the purpose of that long ago blog post was, you wonder? Because I saw someone post on Facebook yesterday that tonight (Friday) Rick and his work will be featured on NBC's Rock Center. A few years ago this would have been just another heartwarming story to smile over before turning in for the night. But now? I cannot wait to watch it. I am honored to have met this man and am forever grateful for the ways Rick and his photographs are changing the world and how society views our children.


  1. What an amazing photographer and story! You and Ella are so beautiful!

  2. Tis is the coolest post! And gorgeous photo of the two of you!