When I learned about the Myotonic Dystrophy Conference in Cincinnati to be held October 22, I didn’t give my daughter, Nicole, a choice. I said, “We are going.” She didn’t fight me on it. Progress!!
She had no interest in meeting others with myotonic and almost always says “no” to my requests to participate in anything that smacks of a support group. That is one of the reasons why we have never made it to a national conference.
Then we received an e-mail telling us about Rick Guidotti, a fashion photographer, who would be at the conference taking pictures of individuals with myotonic. Kathleen Cail, organizer of the conference, asked us to indicate whether or not we wanted to partake of this opportunity.
I told Nicole and asked if she would like for him to take her picture. To my absolute amazement, she said “Yes!” I was overjoyed. It isn’t everyday you have a chance to have your picture taken by an award-winning fashion photographer. Nicole’s world has shrunk considerably since she had to give up working, so I was thrilled for her that something extraordinary was coming into her life.
I had no idea just how extraordinary this opportunity would be. I had no idea what an amazing human being Rick Guidotti is. He is a man on a mission and is making a huge difference in the lives of many people who are not considered beautiful. Rick, however, is doing everything he can to change the way the world sees them. His mission is to change our perception of beauty, one photograph at a time.
Rick lives in NYC and one day he saw a tall pale woman with long flowing white hair waiting at a bus stop. He thought she was beautiful and he wanted to photograph her. 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.
Rick told us about what happened when he finally had the opportunity to photograph a woman with albinism. She came into his studio hunched over, head down, full of shame about her appearance. When she left, she looked like this.
Rick’s chance encounter on the streets of NYC changed his life. He has spent the past eighteen years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual differences.
Rick went on to found and direct Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with genetic difference. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights, exhibiting in galleries, museums and public arenas internationally.
Rick’s book features the beauty of individuals with all kinds of genetic and physical disabilities.
Grace, the daughter of Kathleen Cail, the organizer of our conference, represents the myotonic dystrophy community with her photograph in Rick’s book. Her photograph is shown here on the left in an exhibition held in Cincinnati.
Rick must have spent 15 to 20 minutes taking pictures, not only of Nicole, but of both of us. His camera clicked away as he marveled at Nicole’s beautiful blue eyes. Stiff at first, she finally couldn’t help but give him a big smile even better than the one in this photograph I took of the two of them. At the end of the conference, he presented a collage of pictures he took that day. There is a beautiful one of Nicole.
Rick comes to conferences like ours and photographs free of charge. At some point, we will receive ours. I’m not sure when and how but when they arrive, you can be sure they’ll be showing up on this blog.
Rick was so generous and genuinely interested in our story and the memoir I am writing about my spiritual growth as a result of living with family members who went for so many years without a diagnosis. He excitedly shared with me his experience in the editing process of his book. Our connection with him endeared him to us.
In the morning, the doctors and researchers gave us HOPE.
In the afternoon, DM Warriors engendered ADMIRATION.
Throughout the day, Rick mixed in
Thank you, Rick. You are one extraordinary human being.