Rick Guidotti was a fashion photographer working in Milan, Paris, London and New York City for such clients as Revlon, L’Oreal, Elle and Yves St Laurent; shooting such iconic beauties as Claudia Schiffer and Cindy Crawford. But all this would change in 1997 when Guidotti would embark on the most important journey of his life – as an artist, a human being and the launch of Positive Exposure, a 501(c) arts organization that utilizes photography, video and narratives to transform public perceptions of people living with genetic, physical, cognitive and behavioral differences – from albinism to autism.
“As a fashion photographer, I was always told who was beautiful. I was told who the model of the moment was,” Guidotti explains. “As an artist, this was so frustrating because I saw beauty everywhere.” Leaving his studio one afternoon, Guidotti spotted a young girl waiting for the bus. She did not have pigmentation in her hair, her skin or her eyes. She had a genetic condition called albinism. As Guidotti recalls, “I instantly realized that I had never met a model that looked like her and this beautiful girl had never been included in the beauty standard.”
Running to the nearest bookstore to get information on albinism, Guidotti was struck by the immense amounts of terrifying images depicting albinism and many other genetic and medical conditions. “These images were all the same – photographs of people up against walls in doctor’s
offices, in their underwear or naked with black bars across their eyes,” Guidotti exclaims. “Where were the photographs of this gorgeous girl I saw waiting for the bus?”
It was at the moment that Guidotti decided to refocus his lens to create an alternative to these traditional medical photographs and insist that beauty and humanity were ultimately recognizable in these images. Guidotti contacted The National Organization for Albinism and
Hypopigmentation (NOAH), a support group for people with albinism, and proposed the idea of a creating a non-traditional partnership between a fashion photographer and a genetic support group. “I told them together we would produce something beautiful, powerful and above all positive and they agreed.” The very first person that Guidotti photographed in this partnership was Christine, a stunning young girl with long white hair and pale skin. But when she walked through the door of his studio, her shoulders were hunched with her head down, giving one-word answers and no eye contact. “It was obvious that this teenager had been tortured and teased her entire life because of her albinism, because of her difference and this abuse had left her with
zero-self esteem,” Guidotti recounts.
Initially Guidotti feared to overstep his bounds and upset this girl who seemed so emotionally fragile. But he realized that out of respect for Christine, he needed to photograph her as he would any super model – and that included fans, music and lights. As Guidotti recalls: “I grabbed a mirror that was by the set and held it up close to Christine and said, ‘Look at yourself, you’re magnificent!’ And instantly she saw what I saw – she saw b e a u t i f u l C h r i s t i n e ! Suddenly her hands went on her hips, her head raised to the lights, shoulders were pulled back,
and she exploded with a smile that lit up the world. I knew kids would still make fun of her, but
I knew the insults would never have the same impact! She was empowered with a new sense of who she was! She was now and forever, amazing!”
The first series of images appeared in LIFE magazine in a cover story entitled “Redefining Beauty” in 1998. The five-page photographic essay set Positive Exposure in motion, and
soon people living with albinism, their families and local support organizations were phoning Guidotti from around the world. Not long after, Guidotti was given the Art of Reporting Award for the LIFE magazine article from the D.C.-based Genetic Alliance, a coalition for all genetic support groups worldwide. The president at the time, Dr. Jannine Cody, presented the award and told Guidotti that she was also the Founder and Director of the Chromosome 18 Registry & Research Society, a support group dedicated to people living with Chromosome 18 anomalies and their families. Dr. Cody invited Guidotti to come to the organization’s next family conference in order to present this idea of celebrating all difference – a message that Dr. Cody felt was universal and applicable to all. Guidotti accepted. “I thought this was an amazing idea,
but not knowing anything a b o u t Chromosome 18 anomalies, I went back to medical textbooks
for information,” G u i d o t t i remembers. “Again, I found startling medical photographs of kids with cleft palates, kids with feeding tubes, tracheotomies, kids with mobility issues and photographs of fetuses. These images were terrifying.”
On arrival at the conference in San Antonio, Guidotti was sent to the auditorium where the kids and young adults were being entertained by a clown, making balloon animals. “I slowly walked in with these horrible images from medical textbooks burned in my head, when instantly I was surrounded by kids screaming with laughter. I suddenly realized that these kids were just kids. They were kids with cleft palate and feeding tubes and mobility issues, but they were kids—and they were kids having fun!” Today Rick sits at the helm of Positive Exposure where his whirlwind of a work schedule would leave most people exhausted. His never ending drive to promote a more inclusive and compassionate world where all differences are celebrated is evident in everything he says and does. “Usually when one sees someone with a difference, we have two options: we either stare or look away,” he explains. “Sometimes that looking away can be more painful than the staring. Positive Exposure creates alternatives to those options by steadying the gaze long enough to see beauty in that individual and to embrace what we all share in common – humanity.”
Positive Exposure creates lectures and workshops for healthcare professionals, students, educators, universities, family conferences and corporations as well as community and public events. The organization further conducts selfesteem and self-advocacy workshops for individuals and families living with difference, corporate diversity and awareness seminars and multi-media exhibitions for schools, hospitals, galleries, museums and public arenas worldwide.
The PEARLS Project
With 1 out of 6 children in the United States born with a disability, the need for young people to gain a better understanding and respect for children and adults living with genetic, physical, cognitive and behavioral differences is a crucial component to becoming a contributing member of society. The need for teaching tolerance is further intensified as schools nationwide serve increasing numbers of students in special education.
For this reason, Positive Exposure developed a program entitled,
The PEARLS Project (Positive Exposure Ambassadors’ Real Life
Stories), a ground-breaking educational tool which invites K-12 students, teachers, and health care providers to learn about the real life experiences of individuals and their families living with genetic, physical, cognitive and behavioral differences. Audiences are introduced to a photo exhibition of people living with differences (PEARLS Ambassadors), which then comes alive over the course of a few weeks, as children, adults and families from the photographs blog about their life and experiences through a password protected, online forum. The Positive Exposure team approves all posts. As audiences access the blogs, videos and images and ask questions of the PEARLS Ambassadors, correlating units of study, lesson plans and projects are implemented.
Whether used in the classroom or as a professional development tool, lives are enriched and changed as audiences gain a deeper understanding and respect for human diversity. Concurrently, the individuals and their families living with difference are empowered to become self advocates and use their unique voices to foster positive change.
Yet another initiative of Positive Exposure is FRAME (Faces Redefining the Art of Medical Education), a web-based educational library and resource created by Positive Exposure that changes how medical information is presented to health care professionals in training, clinicians, families and communities. FRAME utilizes short educational films hosted on the Positive
Exposure and partner websites. What started as a pilot in collaboration with students in the Joan H Marks Graduate Program in Human Genetics Sarah Lawrence College with five genetic conditions – and formerly entitled The New Face of Genetics – FRAME is growing into an important compendium of genetic and other medical conditions that will change the way students in health care fields see and experience individuals living with genetic and other medical differences.
Each short film will give future genetic counselors, nurses and physicians a more robust understanding of rare genetic and other medical conditions, while modeling an attitude of respect for the humanity of patients. Viewers will get to see participants talk, move, and smile, a departure from the “patient-as-a-specimen” model that most educational medical literature utilizes. FRAME presents individuals living with specific genetic and other medical conditions in a manner which captures their humanity and beauty. In each film, participants connect differently with the audience as they introduce themselves to viewers, and then demonstrate hallmark characteristics of their condition, not in a clinical, but in a “natural, real life” manner. This provides each visitor to the site, the opportunity to study and fully understand a genetic or medical condition on a real, dynamic person, bringing a new perspective to medical education and the learning process. The script for each segment of the film will reflect the most current information on each condition as well as input from our team of well-regarded geneticists, specialists, families and support groups.
The goal is that once completed, each segment will be used by health care providers in training and professionals as a tool to learn, understand and experience the distinct characteristics of the specific genetic or medical condition. It will be an important teaching and learning tool that
highlights humanity alongside key medical information. Additionally, FRAME can be utilized by families, therapists, educators, communities as well as a tool for transition medicine as an increasing number of young adults living with genetic and other medical conditions now enter into the adult health care system. Positive Exposure also works with organizations, hospitals, educational institutions, museums and corporations in the designing and implementation of
tailor-made projects fulfilling a specific need. A sampling of projects include The Genome Zone at the Smithsonian’s Museum of Natural History in Washington, DC, and a traveling global public exhibition featuring individuals living with Hunter syndrome.
In October, Kartemquin Films’ On Beauty, a documentary about the work and community of Positive Exposure will be released, with a world premiere at the Chicago International Film Festival.“ And that is how the journey began and continues,” explains Rick Guidotti as he heads out the door for the umpteenth time – with his suitcase, laptop and camera in hand – en route to the airport for yet another round of lectures, photo shoots, exhibitions and projects dedicated to the motto: “Change How You See, See How You Change.” •
ABOUT THE AUTHOR:
Liz Matejka-Grossman is Executive Director of Positive Exposure. For more information, visit www.positiveexposure.org