Above the couch in Rick Guidotti’s office is an enormous photo of a boy swimming, arms spread like wings. He’s got Marfan syndrome, but before I notice his elongated arms—caused by his genetic disorder—it’s difficult not to notice the huge smile stretched across his face. In fact, all the photos adorning Guidotti’s walls showcase young kids with genetic disorders laughing joyously. You can tell that the subject of each photo feels beautiful—and that’s exactly Guidotti’s mission.
Guidotti founded his nonprofit, Positive Exposure, to change public perception of people with genetic, physical, behavioral and intellectual differences through photos and photo shoots. Since its launch in 1998, the organization has gotten a lot of, well, exposure. Guidotti has received numerous awards for his photos, and his work has been in the Smithsonian’s National Museum of Natural History. There’s even been a short documentary, “On Beauty,” made about him. It’s clear that Positive Exposure was well-received by the public. “It was almost like people were collectively relieved that someone out there was seeing these gorgeous kids the way that their families see them,” he said.
Before Positive Exposure, Guidotti enjoyed success as a high-end fashion photographer, where he worked with big-name magazines like Vogue Italia, GQ and Elle, along with clients such as Balenciaga and Coach. But after fifteen years in the business, he found that both the brands with whom he worked and the mainstream media would tell him who was considered beautiful; it wasn’t up to interpretation, and that frustrated him. “I was always forced to work within the certain parameters of a certain beauty standard,” he said. “As an artist, I didn’t see beauty on just covers of magazines; I see beauty everywhere.”
Although exasperated with his job, he wasn’t prompted to make a change until he met Margaret Breed, a girl with albinism, in 1997. “I realized there’s beauty there, but I’ve never met a model that looked like this,” he said. “Then I started realizing that she wasn’t allowed to be considered beautiful.” As she waited for the bus on Park Ave., Breed unknowingly inspired Guidotti to devote his career to expanding the parameters of beauty.
“We all have our own biases and our own ideas of beauty, but beauty exists everywhere if we could just allow ourselves to see it,” Guidotti said. “I wonder how often I walked by Margaret waiting for that bus before I was ready to see her.”
After seeing Breed, Guidotti looked for photographs of other people with albinism. Not sure where to look, he turned to medical textbooks, but what he found unsettled him. “I found countless images of kids up against walls in doctors’ offices, usually with the black bar across their eyes,” he said. “I saw red eyes. I saw people in cancer wards. I saw a very negative portrayal of albinism.”
He hadn’t been able to find any positive portrayal of albinism until he discovered the National Organization of Albinism and Hypopigmentation. NOAH, a non-profit organization that assists people with albinism, is an advocate in the albinism community, and when Guidotti found the organization, he knew he had to collaborate.
At first, NOAH was resistant. “They pretty much just wanted me to disappear at first,” he said. “They had huge fears of exploitation because up until that point, anytime there was a magazine article about a kid with albinism, it was always a story about a victim.”
But Guidotti had no intentions of exploitation. He saw the beauty in people with albinism and wanted others to see it too. Eventually, NOAH agreed and Guidotti was overjoyed, excited for the chance to portray people with the genetic condition in a positive way. It wasn’t until Christine, the first girl he was to photograph, walked in that he realized how challenging this process would be.
“This kid was shoulders hunched, no eye contact, one-word answers,” he said. “She was so beautiful yet was bullied and abused because of her difference, which left her with zero self-esteem. First I thought, ‘How am I going to photograph this kid?’ I’d never met anyone so vulnerable.”
But Guidotti rose to the challenge, falling back on the skills he’d learned from years in the fashion industry. “Out of respect for this gorgeous kid, I’m to photograph her like I would any supermodel,” he said. “So the fan went on and so did the music.” Guidotti, personal and sympathetic, held a mirror up to Christine’s face. “Look at yourself, you’re magnificent,” he told her.
“This kid looked in the mirror and exploded with a smile that lit up New York City,” he said. “She needed to change the way she saw herself.”
This, of course, is Positive Exposure’s whole mission statement: change how you see, see how you change.
Guidotti has photographed children and teenagers with all different genetic disorders throughout his career. Genetic Alliance, a coalition of genetic support groups, reached out to him after his work with NOAH gained attention, and asked if he’d be interested in photographing children with other genetic disorders. They believed Guidotti’s message was universal, stretching beyond albinism. Guidotti jumped at this opportunity, ready to “celebrate all differences by finding beauty everywhere.”
Since then, Guidotti has photographed children with a myriad of genetic disorders, including Marfan’s syndrome, a condition that affects the body’s connective tissue; ichthyosis, a skin disorder that lends to dry, scaling skin; and Fragile X Syndrome, a condition that causes intellectual disability, behavioral challenges and physical characteristics. His photos have a common theme—their subjects always look happy.
Guidotti is still using Positive Exposure to spread awareness of various genetic disorders. One of his newest initiatives, launched in late February, is a video series that follows Lexie, a young adult with albinism who was bullied her freshman year of college. “I had two options,” Lexie says in the first episode of the series. “I could let myself be victimized, or I could raise consciousness by educating people on the issues of intolerance and discrimination.” Through these videos, Lexie and Positive Exposure hope to spread awareness by “showing people something they can relate to so that difference doesn’t seem so foreign.”
Positive Exposure has also recently released three short films as part of the Faces Redefining The Art of Medical Education project. FRAME, which launched about two years ago, is a web-based resource aimed at changing how healthcare professionals present medical information. FRAME uses short, educational films that incorporates humanity with medical information by putting faces to the genetic disorders. The three most recent FRAME films follow individuals and families affected with Fragile X, Cystic Fibrosis and Deletion Syndrome.
Guidotti, a busy man, spends his time traveling around the world to speak to medical students at various universities, attend conferences dedicated to different genetic disorders and, of course, take lots of photos of the people he meets at these conferences.
The idea of beauty has shifted since Guidotti first saw Breed in 1997, just like he had hoped it would, as more people who aren’t the industry standard of beauty are noticed by the public eye. While he doesn’t think that Positive Exposure was the main impetus behind this societal shift, he does believe they were part of the movement. He mentioned Winnie Harlow and Diandra Forrest, two well-known models with genetic disorders who he believes are breaking ground. Harlow has a skin condition called vitiligo; Forrest has albinism. “I think the world is ready to see beauty in difference,” he said, citing the two models as proof.
While he doesn’t believe a magazine like Vogue will use a person with a genetic disorder as a cover model just yet, he’s hopeful that the moment isn’t too far in the future. “Hopefully, we’re going to look beyond their differences and just see the beauty and the humanity.”