At the Rare Genomics Institute, we understand that enacting change cannot happen unilaterally and that solving medical mysteries does not come without teamwork. We stand proudly at the forefront of the utilization of genomic sequencing for the purpose of identifying, treating and hopefully curing rare diseases. At the same time, we realize there are many other people outside of our organization who are just as fundamental to the fight against rare diseases as we are. The team at RG is inspired by those who dedicate their lives to helping others affected by rare disease. Here is one of their stories:
Last time we began to showcase a remarkable individual whose chosen path in life is to convince the world that all people are beautiful. Rick Guidotti creates positive imagery where others choose to ignore it: his photographs allow the viewer to realize that everyone, no matter their disability or condition, is beautiful.
This does not come without its challenges. Before photographing those with Fragile X Syndrome (a genetic marker for Autism), Rick did not know that those with the disease prefer not to look into other people’s eyes. When attending an event with the hopes of photographing some children with Fragile X, Rick was surprised when many of the children ran away from him screaming.
Looking into a camera was apparently a scary experience for these children. In an effort to remedy the situation, Rick began photographing a little girl’s doll and showing her the pictures. Giggling, she brought Rick all of her dolls to photograph. After running out of dolls, the girl showed Rick her friends at the event, and then her family. Eventually, Rick had photographed everyone in the room.
Rick’s technique in photographing his subjects (or as he refers to them, “Ambassadors”) should be noted:
(I) just turn the light on these amazing people that normally don't have a light shined on them and they're usually beaming. So many times it’s not just the person that’s beaming on the set, it’s their families that are off set that are beaming even brighter: their kids are finally being seen the way that they should be…People have so much to offer, no matter what their capacity happens to be, the joy is in there. That's what we need to see. There isn't anybody that should never be seen in that beautiful light. We should all be seen in that light. That's what Positive Exposure is about: to make sure that everybody, everybody has that opportunity.
Faces Redefining Medical Education:
Medical textbooks and training materials are in dire need of more humanized photos of people living with disease. Most imagery found in those materials is stark: it is designed to show the (often literally) naked and harsh reality of physical deformity. It ignores that those living with diseases are people, rather than objects. In designing photographs to show simply how a disease presents itself, the makers of medical texts often ignore the human element in their pictures.
Through Positive Exposure’s FRAME (Faces Redefining Medical Education) program, Rick is working with the medical community to re-craft ideas of what an appropriate image can be in a medical model.
Rick began his work on the FRAME project highlighting Marfan’s Syndrome, “I thought, as an artist, how can I present Marfan's Syndrome (with) all the information you need as a healthcare provider in training to identify Marfan's, but let’s add the most important, key ingredient which is missing in all these photographs: humanity.”
The reason for the FRAME project is simple, “Nobody, and this is across the board; nobody wants to be seen as a disease or diagnosis. We always want to be seen as a person, first and foremost. (We) also have an opportunity to see all of these great Ambassadors the way someone that loves them sees them: through the eyes of their mom or dad, through the eyes of their partners or their children or their siblings or their best friends.”
The FRAME project doesn’t end at still photographs, however. FRAME’s foundation is a series of short videos (around 10 minutes in length) that highlight the hallmarks of a disease or condition. The twist that makes these instructional videos more impactful than most: they’re told from the perspective of either someone living with (or a loved one of someone living with) a particular disease or condition.
The impact of these much more personal experiences cannot be overstated, “senior physicians have never even heard of some of these conditions before. But med students can get seven minutes where they can learn from Winnie, what these conditions are, and (they’re) going to remember it…They're going to be better healthcare providers because they saw these kids not in the clinical environment. They met these kids being kids. They met these kids not in crisis.”
Positive Exposure has taken the sentiment of the FRAME program one step further with a project simply titled, “Pearls.” It is clear that not only the medical community, but rather society at large, could benefit from a fuller understanding of each of its members. In collaboration with the Museum of Tolerance, Positive Exposure has facilitated an in-person/online hybrid educational opportunity for children and young adults so that people may begin to understand the differences among themselves.
In the program, Positive Exposure’s Ambassadors share their unique perspectives in life with others who may have questions. These Ambassadors speak about their differences, but they also facilitate more casual conversation: all in an effort to bring awareness to the community at large that our differences in a way make all of us the same.
Pearls has been particularly well-received, according to Rick, “People are just embracing (it) because (Ambassadors) are giving people an opportunity to not look away… (The) Pearls project and all of our other programs are creating opportunities to steady the gaze of the public long enough so they can see beauty in difference and then, of course, to see around that (difference).”
From April 5th through April 12th, the Art Director's Club in New York City hosted a Positive Exposure's Spring Gala. That event serves as a model for the organization's future publically. Rick is determined to feature both the FRAME and Pearls projects in future exhibitions, with an eventual eye at integrating each program into American educational programs.
It is important to not lose sight of the reason for the existence of Positive Exposure: the celebration of life and beauty, in all of its forms.
As I personally struggled to define beauty, Rick stated elegantly, “We all have our own ideas of what beauty is. In most of us though, unfortunately, it’s already been defined by somebody else's standard…Beauty is personal. Beauty is something we all should be empowered to see, and we should all be allowed the freedom to embrace our own ideas of what's beautiful.”
Hopefully through Positive Exposure, we can change how we see beauty: just imagine how much we could change.