Episode 5: The Image of Albinism

Esther Rosi-Kessel: You’ve probably heard the saying, “a picture tells a thousand words”. Two pictures of the same subject could tell two completely different stories. So how can the way we interact with other people be shaped by the images we see? Hello, and welcome back to Albinism: More Than Meets The Eye, a podcast that explores the realities and lived experiences of people with albinism. I’m your host, Esther Rosi-Kessel. Today’s guest is Rick Guidotti, an award-winning fashion photographer turned activist and the founder of Positive Exposure, which you’ll hear more about in a few minutes. He’s been involved with the albinism community for many years, and his work is dedicated to celebrating the beauty in human diversity and genetic differences, including albinism. In this episode, you’ll hear from Rick about his experience and inspiration with creating Positive Exposure, and how his work is shaping the way the world views and understands albinism. Now, I’m excited to welcome Rick Guidotti.

Okay, welcome to the podcast!

Rick Guidotti: Yay! 

Esther Rosi-Kessel: Would you like to introduce yourself to the audience and tell us a little bit about what you do? 

Rick Guidotti: Sure. First of all, thank you for this opportunity to talk about Positive Exposure . I'm Rick Guidotti . I'm the founder of Positive Exposure. Positive Exposure is a nonprofit organization that promotes a more inclusive world through photography, through film and through educational programs. We create opportunities for our communities all around the world, living at risk of stigma and exclusion to be celebrated, embraced, and absolutely given an opportunity to see beauty in human diversity, creating opportunities to understand, for all of us, to understand that it's our differences that unite us, not divide us.

Esther Rosi-Kessel: I think that's a really great mission. Can you tell me a little bit about how positive exposure started and what it really has to do with albinism ? 

Rick Guidotti: It's so exciting. Esther. 25 years ago, I was a fashion photographer living in New York City. I also lived in Milan, in Paris for many, many years. I was shooting for like Harper's Bazaar and Revlon and Elle and Marie Claire and living in Milan in Paris.

My studios in New York City, but I was so frustrating cause I was always told who was beautiful. I was always told who the model of the moment was, who the face of the season was, and I never saw beauty, I continue never to see beauty just on covers of magazines, I see beauty absolutely everywhere.

I just did a casting for Elle Magazine in New York City. I think I saw every model in the world that day. I was leaving my studio, walking down Park Avenue and I spotted this young lady waiting for a bus. She had white, white, white hair, pale skin. She was stunning. She had albinism. 

I knew it was a genetic condition. I didn't know much about albinism, but I knew that this gorgeous kid had never been included in the beauty standard. So after the bus came, she got on the bus and took off. I knew I had to find photographs of this gorgeous kid or friends of hers that shared the same condition. Albinism. 

So I studied, uh, photography and art and filmmaking at the School of Visual Arts. I had never seen a medical textbook prior to that moment, but I thought that would be a really great place to start to find photographs of people with albinism. So I opened the medical textbook so excited to find this gorgeous girl. But I found really horrible scary images. Images of kids with black bars across their eyes and like naked in doctor's office walls.

I saw one eye was like, it was a shot of a bright red eye that said the albino eye. I'm like, what? This kid had beautiful blue eyes. You have red eyes and I'm thinking, this is terrible. And the, and so I very quickly put that medical textbook. And went to and encyclopedia thing. Aha. That's where I'll find it.

But there, I found photographs in the circus and then I started finding all the negative references in feature films like Powder and the Da Vinci Code. It was like these horrible stories. I'm like, oh my God, this is awful. They always the villain. But then I saw that there was an organization called NOAH , the National Organization for Albinism and Hypopigmentation.

I was so excited when I found them, Esther. I called them immediately, said, Hey, I'm a fashion photographer. Let's show the world the beauty of albinism. This is gonna be amazing. They said, get lost. You know, I'm pretty persistent. I kept after them and they made it very clear to me as, as the leaders that they are, they made it very clear to me about their fear of exploitation. That every time there was a magazine article about a kid with albinism, it was always a story about a victim. It was always exploitative. It was always sensational. It was always negative. And I said, well, I've gotta agree with you. I can't find one positive representation of albinism anywhere, and I've been searching.

I said, so let's do something strange here. Let's form a non-traditional partnership: fashion photographer and genetic support group or advocacy group, and together we'll collaborate and create a photographic essay that celebrates the beauty of albinism and they agreed. Positive Exposure was born that day.

I'm so excited to get started. In walks Christine, the first kid I'm gonna photograph. She's stunning. She's five nine, long white hair, pale skin, gorgeous. But she walks in with her shoulders hunched, head down, no eye contact, one word answers. This gorgeous kid kinda had like zero self-esteem as a direct result of the bullying and the teasing she experienced every day in the classroom environment.

I'm thinking, how am I gonna photograph this kid? She's so shy with just the day before I photographed Cindy Crawford. You may not know who she's, she's a model. It was a Revlon shoot, kind of one of the supermodels from the nineties, and I just photographed her in LA the day before on the set for a Revlon shoot.

I felt, out of respect for this gorgeous Christine, I'm gonna photograph her like I would any supermodel. So the fan went on, the music went on, and I literally held up a mirror to this gorgeous kid and I said, Christine, look at yourself. You are magnificent. And she looked in the mirror and she saw exactly what I saw.

And all of a sudden her shoulders went down. Her head went up in the air, hair blowing hands on her hips, and she exploded. Literally with a smile that lit up New York City. That's how positive exposure was born. 

Esther Rosi-Kessel: Yeah. I really appreciate how you make people feel so confident. When I met you at NOAH Con, the albinism conference , the kid you were photographing before me was wearing a superhero costume and you turned to me and you were like, she has superpowers.

And I was like, yeah, she does. 

Rick Guidotti: Oh, I know. I remember those photographs!

Esther Rosi-Kessel: Yeah. But there is another extreme to this, which is that one thing I've seen recently, I follow a lot of people with albinism on social media and. One thing I've seen, especially on TikTok, is that people will be talking about albinism and the visual impairment that comes along with it and you know, all the, just the parts that you have to live with and the comments will be like, I wish I was albino . You're so beautiful. 

Or the other one is you're basically a vampire. Which, I think vampires are cool, but...

Rick Guidotti: It has nothing to do with living with albinism, that's for sure. 

Esther Rosi-Kessel: Yeah. And there's also so much stigma around albinism being like a supernatural thing that maybe a vampire is not the best comparison.

Rick Guidotti: No. 

Esther Rosi-Kessel: So how do you try to strike a balance between basically romanticizing albinism and other conditions, and finding the beauty in them? 

Rick Guidotti: Well, it's not necessarily romanticizing albinism or other conditions. It's about making sure that we all have an opportunity to, you know, to that we all understand that we all have the exact same needs around the globe, no matter which continent, which country, which language, which culture.

We all have a need to be seen, a need to be heard, and a need to be. And when I'm, and I'm not like highlighting all of the albinism is this, and that's like so sensational. It's not that it's really for me, I'm not photographing albinism, I'm photographing the beauty of humanity. I'm photographing the beauty of diversity.

It, there's a, a power there that we all possess in that it's that spirit of difference. It's that, you know, it's, it's, it's never, I don't think I' ve photographed a genetic condition in my life, in the last 25 years. It's always been humanity. And that's what's so important for me and that's why, and that's why I'm able to celebrate this cuz it's not about, you know, it's absolutely there.

Everything comes with challenges and it's never to negate those challenges or to deny whether it's a disability or a visual impairment. It's to embrace all that. To embrace all that cause that's how we are identifying. But at the same time, there's a, there's a, a connection in there that joins all of us that unites us and that we're united by cost of our differences.

And I think that the most important thing is it's not so much about kind of romanticizing a certain difference or a condition or whether it's a birthmark or white hair. Or pale skin or nystagmus, strabismus. It's not, it's really about looking at humanity and creating opportunities for us all to join together to know that we're all so similar in our differences and that we're united because of our differences and not, and our, it's our differences that absolutely, will never, as long as I'm alive, divide us. 

Esther Rosi-Kessel: Absolutely. So since you've become involved with albinism community, have you seen like a shift in how the general public views albinism? Like people that might not have known about it before or seen the beauty in it before? Have you seen a shift? 

Rick Guidotti: I have seen a shift.

Hopefully I'm part of that human movement to see beauty in human diversity. This shift is happening specifically cause we're, none of us are really buying into that stereotype that magazines now are pushing out. This is what's beautiful and you'll never get here. Ha ha ha. It's like we all belong in those parameters of the beauty standard.

And the beauty standard is not relaxed. It's still pretty rigid, but at the same time, it has a place for all of. And I do see a ship, but it's a slow ship. I mean, there are models like Winnie Harlow who have Vitiligo that are on, appearing on covers of magazines. I don't know if you know the condition Vitiligo when you're losing pigmentation and it's changing a bit, but the fashion industry is not ready to embrace all differences.

We have, there are some in there and it's good, but they're like these token differences and, and we're getting there slowly, but. But for me, again, it's not so much about, you know, changing fashion industries, ideas of beauty, but it's changing all, of allowing all of us to see beauty as we see beauty and experience beauty as we experience beauty.

Beauty doesn't just come in the shape of one face and one size. It comes in colors and it comes in texture, and it has sound and vibration and movement. And it's there, and this is a visual artist. It's so important for me to be able to, to capture that, to be part of this collaboration, to present that back.

I have a really strong connection with healthcare providers in training. I really want healthcare providers in training early in their training, understand that it's never what you're treating, but always who you're treating. We're in now more than half the medical schools in the country, and we have another half of the medical schools to get to.

Again, it's creating opportunities again to see the humanity. Going back to those early days when I looked at those first images of albinism in medical textbooks, when I was flabbergasted by images of kids with black bars over their eyes. As opposed to now going to a, a NOAH Con or the NOAH Conference and you see these, you know, everybody there and they're celebrating and it's, it's a party and it's, there's a lot of love at those conferences and they present that beauty.

But it's not the beauty of albinism, it's the humanity of albinism. It's humanity that we all possess and that's important and it's make sure that that is front end. In medical training, but in not only in the clinical environment, also in the broader public arena, in the schools, in the workforce. We have to be relentless to create opportunities to change the way the world sees difference.

We won't want people to ever to say, oh my God, I want to be an albino. No, that's it. Cuz that person really needs that, their own intervention. Cause they need to look in the mirror and see how beautiful they are and understand beauty in their own uniqueness and whoever they happen to be or kind of really creating opportunities for people with albinism not to be called an albino, but, and not to be seen as a vampire, but really get the images and the information out there and get it out there and get it out there straight. You know, right now there's horrible superstitions around albinism in African countries. You know, the last 15 years I've seen murders of people with albinism in East Africa who're working very closely or having the past work with under the same sun and other NGOs in place, like in Tanzania.

And we help set up their, their photographic and their press lab and really creating opportunities. To kind of change the way the public addressed those atrocities and challenge that stigma, but really looked at this superstition surrounding albinism there, you know, and working with and trying to figure out why these witch doctors and, and how do we spread the rumors that witch doctors bones are more valuable than kids with albinism.

And the beautiful thing with Under the Same Sun is they're pushing really hard the agenda to educate people with albinism within their communities. So the next generation of lawyers and doctors and businessmen and bankers and business women have albinism and they're in the workforce. So therefore, it's a lot harder to be discriminatory against somebody who's in a powerful, not only powerful political position, but a powerful position.

You know, I traveled to Fiji where at the turn of the 19th century, a tribe could not hold their territory. Let's say it's somebody with albinism in a powerful political position. So completely revered and celebrated in the South Pacific for albinism. So there's, there's this vision in those stories, but there's just stories and really what we're talking about here is humanity.

Esther Rosi-Kessel: So you've sort of covered this a little bit, but how is your understanding of albinism and other conditions, genetic conditions, disabilities in general, changed through your work? 

Rick Guidotti: Great question. Really great question. For me, it, it always has been, always opening, allowing myself to be authentic and that record and, and collaborate within the beauty parameter, the beauty standard to record beauty in human diversity.

That was not as told what I couldn't do, what was not considered beautiful. If they don't fit within these parameters, that's not the standard. That's not the new face. That's not what Harper's Bazaar or Condi Nast is doing, or Vogue. And with positive exposure, it's allowed me to be much more authentic as an artist, it's allowed me to really capture, and I've never, I stopped taking photographs a million years ago.

It's always a collaboration on imagery. We always create together those images and present them back. And that's what's changed for me as an artist, is I realize that I'm not the one, the sole operator here, the sole artist, are taking photographs and creating images on my own. I've never created on my own.

It's always a collaboration and with positive exposure for the, we just had our 25th anniversary. It's 25 years of understanding that collaboration and how important collaboration is to really impact social change. And it's not just one voice and one camera. It's it's attitude, it's passion, it's compassion, it's talents, and it's about harnessing all that together knowing that we can change this if we do it arm in arm, hand in hand and together. 

Esther Rosi-Kessel: My final question for you is, what have you learned about albinism since you started positive exposure that you wish more people knew just about life with albinism that you've seen through your work? 

Rick Guidotti: That I wish people... you know, I, I wish people understood the impact of stigma, the impact of discrimination, the impact of assumptions and biases has on all of us, and that we have to really put that in check the question, and I still hear these horrible questions by parents of newborns with albinism and many other conditions as well. It's just, there's so many weird assumptions out there.

It's a little bit... what I wish people understood more, and I'm knocking myself out to change that by making very public exhibitions changing and stopping people in their tracks to give them a better understanding of human diversity, but really kind of creating opportunities to really challenge stigma and, and, and create opportunities to celebrate that human diversity.

But it's stigma that I've looked at and I've addressed, and it's stigma across the board. Right now, we have a positive exposure initiative looking at stigma associated with mental health challenges. And although we have mental health challenge, of course, invisible, but yet carries the greatest stigma. So we really need to have more and more conversations and cross multiple disciplines.

We need to address all these issues about, you know, in the classroom, in, in the workforce and in broader public arenas. Now everyone's up in arms talking about DEI opportunities, but so often when you're talking about diversity, equity, and inclusion opportunities, you're not talking about disability. You're not talking about a visual impairment.

You're talking about ethnicity and cultural differences, and we've gotta make sure that we're much more inclusive and that disability is always invited to the conversation, always invited to that table, and always invited to part. And those are things that we're trying to kind of really push again, to promote a more inclusive world.

We opened a gallery here in East Harlem , a multimedia gallery and performance space specifically. Cause we know that we're all creative, but we're limited by our own imaginations. But together we can do anything. But we need to bring people to the table that normally don't sit at the same table to start those new and really sometimes difficult but important conversations. 

Esther Rosi-Kessel: Thank you so much. This was really great to talk to you, and I really hope that listeners hear this and understand, really, I think a lot of what you were talking about is the humanity and celebrating differences as opposed to... 

Rick Guidotti: absolutely, absolutely. This, again, this is, it's all it is about humanity.

I, I remember so clearly working with, you know, in the old days where you see these images of kids with the black bars across their eyes. Now when I leave like a NOAH conference or these other conferences, Families chased me down the street. Please use my kid's photograph or use my photograph. So we don't ever have to see another one of those scary medical photographs that are dehumanizing.

Let's put humanity back in medical training. Let's put humanity back in. In public information and public education about human diversity. Let's create as many opportunities again to understand and to celebrate our shared humanity.

Esther Rosi-Kessel: I hope you enjoyed this episode of Albinism: More Than Meets The Eye! Again, that was Rick Guidotti. For a sample of some of his work, or for more details about some of the topics we covered in this episode, or to read a transcript of this episode, be sure to go to meetstheeyepodcast.com. If you liked the episode, please leave me a comment or review! I’d love to hear from you! Thanks for listening!