01 October 2012

Permission to shine - my time with Rick Guidotti

Rick Guidotti brings so much joy into this world. I spent five days with him, and have been wowed by his purpose, intellect and his ability to make people feel special.  His new motto is
"Change how you see. See how you change". He does this through photographing people with genetic differences, just like he would photograph supermodels. The photos enable viewers to see the person, not the condition.

When Rick Guidotti was a fashion photographer, he was always told what was was beautiful. He photographed the supermodels known by their first name only - Cindy, Claudia, Naomi, Christy. But he didn't only see beauty on the covers of magazines. In the late 1990s, Rick saw a beautiful girl outside of his New York apartment. She had long white hair and pale skin, radiating beauty. She had albinism. Rick did some research on albinism, looking at medical text books. He was heartbroken by what he saw - the people featured in the texts were just medical specimens - their eyes and genitals blocked out. The people photographed looked sad, sick, and Rick described them as "defined by their disease". They were not photographed to show their personality, they were photographed to show their condition. (When I was a child, I spent many hours in a cold hospital room being photographed for similar text books.) He also saw negative representations of people with albinism in movies and on the internet. Rick wanted to change the way people with albinism were represented in medical text books, as well as in society, and so he contacted the albinism association, asking if he could work in partnership with them, taking photographs for text books - "showing the world the beauty of albinism". At first the association was reluctant, concerned about sensationalism and exploitation. But then he put forward the idea of a genetic support group with the association, and suggested they could oversee his work.

His first photographic project was with a young girl called Christine - he said she was just beautiful, but afraid to hold her head up high. She had no self esteem as a result of being teased about her appearance every day. His studio was set up from the day before, when he photographed Cindy Crawford. He treated her just as he treated Cindy, holding up a mirror to her and convinced she was beautiful. He said that at the end of the session, she held her head up high, working the room, and had the confidence to change the way society viewed her. In 1998, Rick's work was featured in Life Magazine, showcasing a range of people with albinism.

Since then, Rick has been helping many people feel more confident through sharing their lives through images, and for the world to "see the beauty in all differences". He set up Positive Exposure with the view to change the way society views people with a wide range of genetic differences and medical conditions. He attends medical conferences where he meets people with many conditions, taking their photos. When presenting, he knows everyone he has photographed by name, referring to them as his good friends. Although he is an artist, he demonstrates great fluency in medical terminology, and he told me that he picks this up through spending time at these conferences and working in hospitals. He also holds exhibitions of his work - one is coming up in Grand Central Station, New York, in October. Below Rick stands in front of part of his Melbourne exhibition.

He wants to show the world that people with differences are children, having fun, full of personality. Rick has done so much good work that you need to know about. You need to see him in action, because he is larger than life, so vivacious. You can watch his TED talk to see why I am so in awe of him.

Rick knows my dermatology geneticist and she told me about him just before I went overseas. They have done some work together and she said she uses his Positive Exposure images in her teaching work at university. When I was told Rick was having an exhibition at The Other Film Festival, where I was a judge, I was very excited, introducing myself to him by email. I was lucky enough to spend a considerable amount of time with Rick when he was in Melbourne for The Other Film Festival. We featured in The Age, watched films, discussed beauty and genetics, and he took some photos of me. We bonded when we met at The Age interview. 

And then again at opening night.
On Saturday morning we had coffee (hot chocolate) with my dermatology geneticist, and we discussed genetic difference and beauty. We talked about the way I can become a change ambassador here in Melbourne. I felt like I was valued for my academia and experience. It was a good meeting.

Rick has the ability to make me feel like I am the most important person in the world when he spoke to me. And it wasn't just me who felt this - he had time for EVERYBODY he met at the festival, and he especially made those he photographed feel like a supermodel. Just like those supermodels are known by their fist name only, the people he photographs are known by their first name. And he is so passionate about his work. I interviewed him for No Limits, his eyes were lighting up,  and he got more and more excited sharing stories of the young people whose lives he has changed through photography.

Rick took some photos of my friend Jess and the shoot truly made her day. She commented later that after years of hating her body, and having people comment negatively on it, she felt like Rick saw her true beauty and made her feel special.

He told me about the way showcasing external beauty in people with genetic differences helps individuals develop confidence. Positive Exposure has an equation: "Self acceptance = self awareness = self advocacy". He said, like Jess, one girl came to the realisation after a photo shoot that while society will always stare, the thing that has changed is that she no longer hates the way she looks.

Many of the people he has photographed have become ambassadors for change, educating their fellow school students, and even setting up branches of Positive Exposure across the world. Rick said "We need to come up with the opportunity for people to meet you through our photographs". And his photographs do just that, moving away from traditional medical images and showing people having fun in a more natural environment.

Rick Guidotti wants to "make the idea of living with difference relevant, and to celebrate difference every day, not just on International Day of People with Disability or Diversity Week". For someone like me, the reality is, looking different is every day. It doesn't come and go. Every day I am faced with judgment, staring, assumptions and people looking away, because their comfort zone is challenged by my appearance. Every day, when I step outside the house, or even on the internet, I have no choice but to make people think differently about people with genetic differences. That we are people with good lives and intelligence too. It loathes me to say "just like everybody else", but people like me are just like everybody else. There is a perception in society, the media and the medical profession that people with genetic differences don't want to be photographed, that we don't want to stand out any more than we already do. That we don't have a right to beauty, because our appearance defines us.

And while there is more to life than external beauty, it is a part of life, and people with differences have just as much right to feel and be told they're beautiful as "everybody else". it's not about vanity or conforming to images on magazines. It's being acknowledged for our beauty.

I have been asked why, when I am not keen on people staring at me, that I am so into fashion and love being photographed. The answer is this. Because I like to look the best I can. I heard Rick say "sometimes looking away is worse than staring". Yes. It is. I see people in the street, busy in conversation, and then the catch a glimpse of me and look away in disgust. This hurts. When I dress up in something fabulous, I want people to look at me and think I am beautiful, not look at me in disgust. I want them to look at my face and see my smile and my eyes and my redness and see that I am living. I am happy.

Rick took some photographs of me when I interviewed him for No Limits. I was photographed with vaseline smears and scale in my scalp. But that's ok - I was photographed as me. No airbrushing, no holding my tummy in. Just happiness, confidence and laughter.

He used this photo in his presentation on Sunday afternoon. The audience cheered, knowing me from working at the Other Film Festival.

He certainly made me feel like a supermodel, throwing in the "work its" and "slink over to mes". He said, on a number of occasions, "see how beautiful you look Carly". And I did. Rick gave me permission to shine.Through him photographing me, I felt beautiful, and proud to feel so. Apart from when I have severe infection on my face, I am never one to duck my head so not to face the world. It is ok to want to feel beautiful, and want others to see you are beautiful, even when you don't fit the traditional mould of beauty. Because as Lady Gaga sings,

"There's nothin' wrong with lovin' who you are
She said, 'cause He made you perfect, babe
So hold your head up, girl and you you'll go far."

I ended my interview with Rick by asking him whether he believes someone with a genetic difference will be on the cover of Vogue magazine. He doesn't think so, but he believes that the media needs to recognise that beauty is diverse. Magazines need to recognise the beauty in people with genetic differences.

I was a little sad when he left. But he said, "don't worry Carly, we are family now". I think I just met my hero. Thank you Rick for making me feel so special. You have brightened my world.

More about Rick's project can be found at Positive Exposure


  1. What a special man. I'm glad he made you fell like a star. You really shine in those photos.

  2. wow! What an amazing story, I've never heard of Rick but I'm going to spend some time googling. Lovely lovely photos Carly, life is so exciting for you right now, you must be feeling a little dizzy! xx

  3. I so love that you got to meet such a beautiful man who is making a difference in this world....just as you are Carly.
    Two amazing people coming together,sharing special moments and at the same time helping others.
    Your light just keeps getting brighter,shining out and touching others with it's warmth.xx

  4. Fantastic post Carly, and beautiful photos. I love reading, and meeting the change makers of the world. And you lovely are with doubt a change maker!

  5. Carly,you're just beautiful!gorgeous smile&all!

  6. What an awesome bloke.

    Thank you for sharing what you learnt from Rick. We need to here and learn from more awesome people like him. Thanks, Carly. I look forward to seeing how you put his lessons into practice! X

  7. What a wonderful project !

  8. Amazing post! I love Rick's mission and work. What an inspiring man! And the photos of you are absolutely gorgeous! :-)

  9. What an awesome person! Thank you for making me aware of him and his amazing work Carly.
    P.S. I love his photos of you.

  10. This is really interesting - thank you for writing about your time with this fellow, and the things you talked about. Have you heard of TEDxMelbourne and their Thought Leaders program? I think you are one of them - check it out!


  11. Hi Carly! Saw your post on ricks walk and led me to your AMAZING blog! Have spent hours reading and think you are awesome!

    I live in London (so glad you had a good time here!) and know rick as I have a genetic disorder called Noonan Syndrkme, named after an incredible paediatric cardiologist, dr Jacqueline noonan.

    I also think rick is just A-MAZ-ing! Such a nice guy too, and I too felt like a real supermodel when he photographed me, after always feeling ugly. As everyone else, I saw my beauty having the photos done, and then seeing them.

    I just had to write here and thank you for all you do to change the way people think about guys and gals with differences. As rick would say, to embrace the spirit of difference!


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