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#104 - Rick Guidotti


Rick Guidotti Incubator Podcast

Hello Friends 👋


We have the privilege and pleasure of hosting award-winning photographer Rick Guidotti on the show this week. Rick's work with children and adults with genetic conditions and disabilities has profoundly impacted how Daphna and I see our patients and how we practice medicine. Rick's work has had a massive impact on providers and families around the world, and we are ecstatic to bring his voice to our program and hope that he will spark your curiosity and lead you to check out Positive Exposure. Since recording this interview, we have partnered with Rick to launch The NICU: A Life in Between. This project focuses on infants, their families, and the staff caring for them in the NICU. Check out the early phases of this work at www.aniculife.org. We will tell you more about this initiative next week during our end-of-year show and how you can join us in fostering a culture of care and love around our NICUs. Enjoy this week's episode, and have a good Sunday!


 

Visit POSITIVE EXPOSURE to find out more about Rick's work:


Check out On Beauty, Rick's documentary on children with albinism:



Check out Rick's TEDx talk right here:


Check out the FRAME project that Rick mentioned on the show today:


 

Short bio: Rick Guidotti, an award winning photographer, worked in NYC, Milan, Paris and London for a variety of high profile clients including Yves St Laurent, Revlon and L’Oreal. His work has been published in newspapers, magazines and journals as diverse as GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine. Rick founded POSITIVE EXPOSURE after a chance encounter in 1997 with a young lady living with albinism at a bus stop in New York City. As an artist, Rick was taken by her extraordinary beauty. In a quest for a better understanding of albinism, Rick sought out medical textbooks, where he was affronted by the dehumanizing images depicting disease, lacking all humanity. It was this experience which forced Rick to turn his lens from the more traditional ideas of beauty, to the beauty and richness of human diversity. Rick has since spent more than twenty 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 difference.


 

The transcript of today's episode can be found below 👇

Ben 1:03

Hello, everybody. Welcome back to another episode of the incubator. It is Sunday, Daphna. How are you?


Daphna 1:11

I'm stoked that we're finally going to release this episode. Yeah, that's how that's how appealing.


Ben 1:17

Yeah, this episode is. I guess it's a teaser to some of the things that we're going to talk about next week. We have the pleasure of having on with us today. Award winning photographer Rick Doty. And if you're wondering, why are we interviewing photographer on the podcast? Well, stay tuned, and you'll find out the work that Rick has done, and, and you'll be mesmerized by his approach to beauty and other stuff like that. So it's quite, it's quite amazing. And it's a good way for our audience to meet, I guess, virtually at least, and also be primed for some of the things that we're going to talk about next week on our end of year show where we talk about some of the initiatives that we've been working on one of them being the NICU life in between with regularity. And we'll talk to you more next week. I don't want to spoil next week's episode, but we'll talk to you more about what that is, what that entails, like, how can you participate and so on. So yeah, I mean,


Daphna 2:17

well, we've really enjoyed working with Rick, so we're excited to introduce him to the community. But we have another exciting event today.


Ben 2:27

Yes. Well,


Unknown Speaker 2:29

you don't know what I'm talking about.


Ben 2:31

No, I mean, I'm I'm wondering today like as in today, they were recording or today they were reading today, Sunday. Oh, Sunday. Okay. No, I don't want you to go ahead.


Daphna 2:42

We've got a big matchup, Argentina versus France. It's like incubator standoff here.


Ben 2:49

For the wall. You want to listen?


Daphna 2:53

I was thinking I would, I would bet you a night call. But you know, I worked part time. So I don't want to. I'm not picking up any extra.


Ben 3:00

I will take I will take a bet. This is how I mean. It's it's a big game for us. And we're very confident that we're going to we're going to take Argentina's dreams away.


Unknown Speaker 3:16

Tina has a long history of soccer success.


Ben 3:22

We have the same number of stars on our jerseys. Ours are more recent. Listen, I feel like what you listen, what you're doing right now is revealing a side of me to the audience that I may not be ready to share. Because we take our football very seriously, in France and my hometown is we're like there's a gene, I guess where you're kind of a nutjob when it comes to football. And I could go on and on about this matchup on Sunday. I'm really hoping that by the time


Unknown Speaker 3:55

but we'll just have to see. We'll just have to see how it plays out.


Ben 3:58

Yeah. What are the toughest opponents said Argentina's facing this World Cup. I have to say they haven't faced anybody of that caliber yet. And to all the people listening to us in in Europe, France got quite lucky. And it was a very tough game against England, which I thought could really win that cup. So could have gone either way. We'll see. And also, we're recording this on Friday. Leo Messi did not practice yesterday. God knows.


Speaker 1 4:26

You see. Okay. Well, we'll just see. We'll just just see what happens. Okay.


Ben 4:31

All right. But no wagers then no wages.


Unknown Speaker 4:35

No agers. Fine.


Ben 4:38

Okay, going back to our guest. I just wanted to be able to read the Rick's bio and then we can get on with the show. So for the people who are not familiar with Richard Doty and his work, he's an award winning photographer who's worked in New York City, Milan, Paris, London, for a variety of high profile clients. including you've sent Aloha Revlon and L'Oreal. His work has been published in newspaper magazines and journals as diverse as GQ People Magazine, The American Journal of Medical Genetics, the lancet Spirituality and Health, The Washington Post, Atlantic Monthly and Life magazine. And the variety of these publications just should give you a hint as to why he's coming on the show. Rick founded positive exposure after a chance encounter in 1997. With a young lady living with albinism at a bus stop in New York City. He'll tell us a little bit more about that. She has since spent more than 20 years collaborating internationally with advocacy organization, NGOs, medical school universities and other educational institutions to effect a sea change in societal attitudes toward individual living with generic physical, behavioral, or intellectual differences. Without further ado, please join document nine welcoming to the show, the amazing Rick guidotti. Rick, thank you so much for being on with us. That's such an honor. Yeah, it's a lot of fun. So for the people who may be wondering, I mean, they're saying Hold on. This is a this is a NICU or neurotology podcast, and what is the photographer doing on a podcast? And why are they bringing a visual media person to an audio format? Can you tell us a little bit about what your background is and what is positive exposure?


Speaker 3 6:29

Sure. Thanks. Thanks again for having me. This is so exciting. I see. I started out as a fashion photographer, based here in New York City, which is where I'm calling in from New York City. I also lived in Milan in Paris for several years, working with some amazing clients like L'Oreal Revlon, from Harper's Bazaar, Elle Magazine, Yves Celeron, in Paris. And it was really exciting. But it was, it was also so frustrating because I was always told who was beautiful. As an artist, I never saw beauty just on covers of magazines. So it was just, it was just so frustrating. And then one afternoon though, I was leaving my studio after doing a casting in New York City, and I spotted the kid waiting for a bus ship white white hair, pale, pale skin. She had a genetic condition called albinism. Albino was the common term. She was so stunning, but I had never met a model that looked like this kid. So I wanted to find out more find images of her images of her friends that shared the same genetic condition albinism. Suddenly, at the School of Visual Arts as an artist and a filmmaker and photographer, I never saw a medical textbook. But that drove me to the medical textbooks to find images of this kid that that would be a great start. And the images that I found in those medical textbooks were very stark contrast to that gorgeous kid I saw laid in there. Not only that, I see images of kids with albinism featured in their underwear up against walls and doctor's offices, but like so many genetic and just diagnoses all kind of presented the same way, lacking the one ingredient that I didn't understand. And that ingredient, of course, is humanity. And I thought, how can we change this? This is just I was just so negative. So it's kind of how it's kind of started a little bit, but I can go on to the story.


Ben 8:16

And you mentioned right, you mentioned that when you did go through these medical textbooks. I mean, most of them, I mean, for a photographer, I'm assuming it was appalling. The black X around the eyes,


Speaker 3 8:27

the black bar, but I understood immediately how the importance of that black bar and conversation with my friends were in healthcare, or just looking at people that are photography historians, because I called everybody and to understand why a black box and it was really to protect the privacy of the individual. So I certainly understood that importance. But I was just I was just everywhere I looked it was negative representation, this dogmatism, but all genetic disease, all those images were lacking humanity. They were all they were just all just diseases.


Ben 9:03

And so I think after I mean, knowing your story, I think you do the one thing that in New York City is the biggest hurdle of everything is that you approached this girl waiting at the bus stop to find out more about could you bring in her bring her into your studio, which on a creep factor level in New York, if somebody approaches you at a bus stop, I was like, Oh my God.


Speaker 3 9:29

Yeah, well, that's not exactly what happened was I wanted to grab work instantly when I saw as I had to take your photograph. You're amazing. But the bus came and she got on the bus and took off and that's and I always say this in every presentation. I was glad I didn't grab her because she was 12 years old and I may still be alive. But that didn't it but what I did my opinion was the immediate call to action for you at that moment was to run to Barnes and Noble the local bookstore and grab a medical textbook and take a look at find out finding I was trying to find images of this gorgeous kid. And I only found these negative images. But I did see that there was an organization and advocacy group supporting people with albinism and their families called Noah, the National Organization for albinism and hypo pigmentation. And that's why I called him me and that's why I called them right now I've since approach 1000 people with albinism, since that moment, but that very far I did my homework and know that at first I say I'm a fashion photographer, let's show the world the beauty of albinism this is going to be amazing. It really said get lost. They were exploiting a magazine article about a kid was always about a victim. It was always somebody suffering with or was exploitative, sensational, and, and negative, always negative. But I said, you know, I have to agree that's negative. I can't find one positive representation of albinism anywhere. I went from medical textbooks, to movies to encyclopedias, and it was always that negative representation, the evil villain, you know, the evil villain


Ben 10:56

is always the person with albinism. True, I think in the Davinci Code that


Speaker 3 11:02

Silas, if he was driving around Paris at night shooting at people, one of the first things I discovered in my research about albinism, is that albinism, people living with this condition have an accompanying visual impairment, most people are considered legally blind, so certainly wouldn't be driving around person like shooting at anybody to get those targets.


Daphna 11:22

Yeah, I think that's, this is why we bring people on the show that I think are unexpected, right? Because just what you said, really, I think speaks to a little bit about what's happening in medicine, it has always happened in medicine, right? So the medical training with those textbooks. impacts how we view patients, right? And so the textbooks themselves, you're right, don't show them as children as brothers and sisters, as neighbors, right? We don't see that. And so when you go out and you start treating people with things that you saw in the textbook, you no matter how empathic a physician you are, it's it's it changes, I think it biases the way that we work with people. And so I think it's just so beautiful, that that's where you went, and you really felt a need. And so I'm wondering, I mean, you're doing amazing things. And I am inviting you to tell us a little bit more about, you know, your organization positive exposure. But part of my question is, how can we get what you're doing in to the hands of medical providers, and I think you partnering with these advocacy groups is definitely a start. Sure,


Speaker 3 12:43

partnering with the advocacy groups for over 25, just about 25 years now. And what I do is I'll go to the family conferences, and I'll create a million images at that conference. And then I get the organization those images to use for their public awareness programs, their websites, their brochures, they're informative, they're there, their medical information pages, and, and really kind of kind of infiltrating those and providing an alternative to those very negative images. Some of the other things that we've done, you know, I'd lecture to medical schools around the world, I've spoken to more than 50% of the medical schools here in the US and continue on, and we have another 50 to go but we're really developing those through various organizations and with the advocacy groups, I don't go to the medical schools, really, specifically someone to teach the science behind the genetic these genetic conditions or these diagnoses. It's really because I can actually pronounce Arthur bright posters multiplex agenda, and I no means I can spell it. And it's only because I've met these great kids. You know, I have family conference, and I met peach. I'll give you a quick story. I met PJ who has authored right posters, he can't use his hands because of the type of artwork right posters that he has. So his family called his eating technique is Viking died because he goes into a plate of mashed potatoes and he comes out. Then he goes into a plate of peas and he comes up, then he chases the sisters around the table with a faceful of mashed potatoes. Get arthrogryposis multiplex congenita after that, she never forget PJ. So every summer during the pre pandemic, and now starting next summer, I go to these family conferences and I always bring med students with me and healthcare providers in training and I shoved them in daycare and I lock the door on them and I come back. And they always have like poop on their shoulder or gum in their hair this but they're going to be better doctors. Not in crisis. They met these kids not in the clinical environment that caught them up. They communicated there's representation.


Daphna 14:34

Well and it's so interesting, just like you said you'll never forget right? And could we not change even medical education and make make the things we're learning even easier to learn? By doing it in a way where we connect, you know, young doctors to people that they're dreaming. That's amazing. We created


Speaker 3 14:54

a series of film called frame frame is face faces redefined the Art of medical education. It's the basic hallmark characteristic of a certain diagnosis or a genetic condition, but as presented by somebody living with that condition themselves or their family, so placing front row and center in medical education, humanity, helping healthcare providers understand early in their training, that it's never what you're treating, but always who you're treating.


Ben 15:23

I think it's important for us to mention also that that, so you are going out there, you're going to family reunions, and things like that, but you do also bring some of these subjects, patients people into your studio. And, and what I really liked, and I really like about your work is that the treatment you provide your your your now in your models, is almost identical to the ones you probably used to have for our magazine. And so they come in and they have makeup artists, like can you tell us a little bit about what is what is it like to bring in a model into the studio,


Speaker 3 16:01

not everybody wants to be a makeup have a makeup artist or wardrobe. Early days, I did that right now, it's really about creating a very comfortable and safe environment. And bringing this really fun element, but always with the idea of beauty, the aesthetic of beauty. But seeing that font enhancing that through just by by, you know, I stopped early days in this project, taking photographs. It's always a collaboration. It's a collaboration with the person that I'm photographing, but also their families, their friends, their spouses, their sisters, whoever it happens to be there with them. There. It's all we all do this together. And we're Kannada with John, like, oh, man, this is amazing. It's all very natural. I also stopped using all flash, the first images that I started with positive exposure were a cover story in Life Magazine called redefining duties. But I stopped since then using Flash because I started working with so many different advocacy organizations. And I would very rarely ever get the full medical history of the person that I was photographing. And I never wanted to put anybody at risk of having a seizure. So I just I moved right into the natural light. And I didn't, I was a studio guy. That's all I knew or studio. And so I had to train myself in daylight and just using natural light to keep up all the people that I collaborate with the safe, and but always creating a really beautiful atmosphere. And there's always cheers and screams and yelling, you're amazing that and no matter which country I'm in which continent, I'm on which language or culture, we all have the same need, we have a need to be seen. We have a need to be heard. And we have a need to belong, right.


Ben 17:37

And so the reason I was trying to get to that, to that point about your treatment of of your models is because you've described in the past, how their perception of themselves evolves, as they are being seen for the beautiful humans that they are. And I wanted to know if you could share some of these stories with us.


Speaker 3 17:55

Sure. I mean, there's so many of them. And it's from the from day one to even like 25 years later, it's always the same feeling. And there's so many of the the models that I've been working with I've been working with for 20 years now. So it's it's so exciting to see that. And there's always that glowing that in the set. That's just extraordinary. But starting with the very first show a woman that I photographed have to collaborate with the national organization with albinism, for albinism, Ghana, hypopigmentation, was a beautiful young woman walked him. Stunning five, nine long white hair guard has been walking with her shoulders hunched head down, no eye contact, one word answers. This kid had zero self esteem as a direct result of the teasing, the bullying and the abuse you experience every single day in the classroom environment. And I'm thinking how am I going to photograph this because I've never met anyone zero self esteem. But just but just the day before I photographed Cindy Crawford on the same set in my studio for a Revlon shooting, I thought, you know, out of respect for this kid, I want to photograph her like it when anyone's on the lights went on to music. And I literally just held up a mirror and said, Christine, look at yourself. You're magnificent. And this kid looked in the mirror and exploded with a smile that literally lit up New York City, she saw exactly what I saw. She needed to change the way she saw herself. Her community needed to change whether they saw her difference. So she created the philosophy that drives positive exposure today, still many years later, which is change how you see. See how you change.


Ben 19:24

I love that. I love that so much. I think I think this is this is such a great. Such a great catchphrase. Go ahead. Definitely.


Daphna 19:33

No, I I certainly and I want to mention this documentary on beauty. I think it's short enough that all of our listeners have time to see it. And I think it will further just let them experience what you experience on the set. What I was particularly impressed by is the parents. So especially we're in pediatrics right so a lot of our patients visit epically tiny visions, you know, they don't speak for themselves yet, but the way that parents started to see their babies, especially when the world had told them so many things about their babies and medicalized their children, and you know, maybe some of those things are true about prognosis, but it doesn't change that that's somebody's baby in somebody's child that they cared deeply for. And so I was just so impressed about how you with just a few intervention interventions of just taking the photos that it seemed like you changed their parents perspective, of my


Speaker 3 20:43

fave, one of my favorite things in the whole wide world is when I'm photographing somebody, no matter how old they are, they're literally good little babies and then tingling or the girl or five year old jumping, and my favorite thing is to look just pass his or her shoulder to his mom or his dad, who their, their brother glowing, even brighter, because finally somebody sees their baby through their eyes. They see they see their babies for the value and the beauty and, and then that's the, that's it, and then they become part of the team that gift that beauty, not to themselves and hanging up. But that gift that beauty to help healthcare providers and training and the general public. see beauty in diversity. See the beauty that normally we're told doesn't exist there because there's a clip out or there's a birthmark, or there's, there's something here or something. And there's always that the language and language is so important, but it just helps us breathe in beauty. And once you recognize that, that beauty is there, it doesn't leave you it stays in your stay enlightened, you never lose that you stay enlightened. And, you know, walking down the street, you see somebody who has a difference coming towards you. You know, you have two options, you stare, but you're not you're gonna get in trouble with them. When you hear your mother's voice. Don't stare, it's not polite. So you look away. But my friends over the last 25 years have told me that they're looking away sometimes is even more painful than the spearing. So we create these very public exhibitions to very gently study the gland study, the gaze turned up, don't go away, come back, come, look. And then when you see and you experience and it doesn't go and you get it, the you don't actually even have to see it, you will experience it and then and then real beauty has sound to it. It has motion it has vibration and as color. It's it's just an extraordinary and you can experience however you need to experience beauty, but it's there and once you experience it, then you're going to start catching it everywhere. So that's what's so exciting.


Ben 22:34

Yeah, and I think that this is where something you quote in the UK, I mean, a quote from from you in that movie and people are saying, Oh, you're capturing inner beauty and bleeping beauty these kids are gorgeous. It's, it's so true. I love that we still Mattamy about this episode is so proudly sponsored by Reckitt to me Johnson. Recommend Johnson is dedicated to the research and development of nutrition products that help support baby development at every stage, including an extensive and female portfolio for premature and low birth weight infants learn more at HCP dot meet johnson.com?


Daphna 23:08

Well, I think, you know, there's something that is well studied in and parents of NICU infants and parents of medically complex children. And it's called the vulnerable child syndrome. And so what it means is that that early life stressor, and you know, I think it's important, even for listeners who may not be familiar with it, of feeling like their baby is fragile and sick and isn't going to survive, changes the way they parent, right. And it changes the way that the child begins to perceive themselves through modeling in the family. And so I just am enthralled with the fact that what you are doing, I mean, really can change a whole life trajectory for somebody. And I am just trying to think of ways that myself as as a health care provider, can can bring that right into the unit and teach teach my parents what you are teaching them through through photography.


Speaker 3 24:13

There isn't any one right way to do that. It's going to in order to change and make all these changes and impact somebody families, it's going to take all of us using all of our talents, whatever they happen to be whether that talents listening, photography, our medicine, whatever the town's happened to have happen to be that we use those to make sure that we all see and embrace the humanity. And first and foremost, especially in the clinical environment. Sorry, I think patients.


Ben 24:39

I think this is why I wanted to have you on the show today. I think this is why everybody in the medical field needs to be aware of your work because we're very biased in medicine. When we counsel families when we study about pathologies, we tend to be told about long term risks long term costs. sequences are. But there's nowhere in the medical textbook that describes the potential lifelong happiness or quality of life that these patients could have. And when we're counseling families, if we're talking about a baby with, I don't know, trisomy 18, for example, which is a group of patients that you've worked with, when we always mentioned all the things that could go wrong, because that's what we're supposed to do. And we never, I mean, at least, I've never been trained to make an emphasis on here are the things that could go right. And here are the, the potential experiences. But my question to you, I guess, is, we are very afraid as physician to be too optimistic and sell the false dream. So in your opinion, how do we navigate this these difficult waters where we have to be a bit honest with the family, we also want to give them the potential hope for for happiness and joy. But we also don't want to sell them something that that may be too optimistic. What do you what do you think is in your experience is a good way of navigating that


Speaker 3 25:58

by being authentic and being honest, I mean, certainly a family is going to need to know what the fears happen to be what the challenges are going to be, they're going to need to know that. And I think as a physician, or as a healthcare provider, it's important to present that, but there's always something there to speak about, that's positive, there's always something there's, there's like, there's there's some, there's a way to connect with that that person, that child that infant, however the age we're looking at, but to connect to make that connection, let that family know that you're seeing their baby, as a person, and valuable with certain challenges. So some of them may be devastating challenges, but you're still connecting with the family and making them know that you're there to take the best possible care of their little charge as possible as whenever you can possibly do to make it and making those connections and not attempt not spending five hours with the family, you're not going to ever gonna have time to do that. But making that human connection to make sure that that they know that you see their baby, as valuable, as beautiful, as gorgeous, as miraculous as they do. Charles,


Ben 27:02

we've been doing a lot of work, and we're trying to focus a lot on healthcare workers burnout and moral injury. And And another reason why I think your work is so is so meaningful and powerful is because I think it has the potential to mitigate a lot of the burnout that we're seeing in the healthcare workers, because many times it's this this learn self helplessness where it's like, well, I don't know what we're doing, that we're trying to save these babies, and there's no good outcome, and so on and so forth. And I feel like taking a glimpse at the potential happiness and the and again, the positive outcomes for these babies is something that is rejuvenating for us to say, Hey, this is this is worth it. Have you seen that shift in the health care workers and even medical students that you've been talking to,


Speaker 3 27:52

all the time, I do also do a lot of Grand Rounds. And it's always, and it's not, you know, I'm very careful, never, I'm not never coming in and lecturing of you, you have to do this, you have to do that I'm just providing the vision that I have, and the beauty that I see. And then presenting that to as an alternative to the medical textbooks that certainly leave that all at all that humanity, you know, the ways that we certainly understand how important it is to present how connective tissue disorder presents itself, what's gonna look like quickly in the medical and clinical environment. But there are other ways of changing that not Marfan Syndrome, but Billy living with or Bobby living with, or just it's very simple changes and presentation. And I find that in working with med students, and when you present to them beside go in. And last but not to teach, you know, again, not to teach the science, but to really make sure that we know that there's a lot of science in medicine, but there's a lot of art and beauty in medicine as well. And that's my take on this. So we're not presenting competitors and seasoned practitioners when Grand Rounds come in, they find out that whoever's hosting Grand Rounds is a former fashion photographer, when they're getting ready to getting ready to walk out because they've been am I going to do catch that connect immediately because it reminds us to see another way of looking at this another way of, of rejuvenating our practices looking at the beauty in our patients and I find so many, it's not so much that they've never had that to begin with. You just kind of there's that burnout, you kind of you kind of forget about that. And I'm just here to remind you to say, you know, this is your passion and it's okay. And here's something really it's going to electrify you and take a look at this gorgeous face and the or this this energy that's going to pop off, you know, off the screen. It's just it's you know, there's it's always there. You know, doctors don't really become doctors because they want to be rich. There's always a drive. There's a there's an AI we've had the great interns and there's this drive to be best to be the better doctor to be, you know, and we're right now working on an incredible initiative. With New York State Cerebral Palsy Foundation, to create a series of films that are going to help healthcare providers and practitioners invite people living with intellectual developmental disabilities into their practice, to enhance their practice, to enhance themselves as doctors, as physicians to make them better people to make them better, and to have a much more delicious practice. And so we're creating this and it's been so exciting because, you know, there's, it's like, what are you asking people? But again, it's through, like the philosophy of positive exposure. But asking individuals that are the patients are future patients? What is it next? What's your What are your successes in the clinical environment? What makes a good doctor for you? So often, it's coming back to just talk to me, don't talk to the person that brought me to the doctor now. And we have our great friend Chloe CSCP. And we've just recently lost close with medical health issues. But I always bring Khloe with me her photograph and all of my presentations because Club was nonverbal. She's so so beautiful, knows how to connect has more language skills than I'll ever hope to have yet she's nonverbal. She can communicate, she's so good. You don't always know what she was feeling what she was thinking and, and people put never going to come into the doctor's office and they go right to her mom, instead of just saying, Hi, Chloe. Well, you look beautiful. That's all it takes, and then Chloe's there. She's, she's melting in your hands. And that's all you needed to say and sell a house. She didn't. Why are you here? Why shear? As that's, you know, that's that doesn't work for clo.


Daphna 31:36

Sorry, I think no, I think that's so powerful, actually, especially for our community. Because I think a lot of people who work in the NICU feel like they take care of these little patients, and they speak to parents. But in terms of our job regarding neuro development in the NICU, I think there's a lot of value for people doing exactly what you said, talking to their patient, right. So every interaction, every exam, every touch time for our little babies, is an opportunity for us to treat them, like the people that they are. And it's I think it would change the way that babies develop in in the NICU. And so I think that is such an important important point. I also, when we're talking about burnout, I think connecting with our patients in that way really can can help with burnout. I'm also impressed though, by how you kind of reinvented yourself, I think that a lot of physicians and healthcare workers are frustrated with the systems in which they work much like you were and so you really, I mean, you really had to change your whole life career to say, you know, I've got, I've got a problem with this, you know, I can do something about it. And I wonder if it would be helpful for people to kind of hear your story about being brave enough to break the mold, and how, you know, our own community can can still reinvent themselves, right? Keep doing what they love, but do it in a little different way. Especially if they're feeling burnt out, especially if they're feeling frustrated by the system's


Speaker 3 33:20

Sure. Great question. I as I was in being more and more frustrated as a fashion photographer, but they're still working with the salon and working in Paris and living in Milan, and it was exciting. But again, I felt that I was always I was never following I was never authentic, I was always following somebody else's idea of what was beautiful and I became a photographer because of the the aesthetic of beauty. I didn't become a photographer so I can date models or anything like that it was really about the aesthetic of beauty. And and that's I was constantly explored that and I just kind of felt that that the parameters were so narrow in the beauty standard that I had, it was my responsibility as an artist to allow myself to connect with my own vision of beauty what I thought was beautiful. And then to present that back so starting so it was a it was a very long and I know a lot of trouble. A lot of art there were a lot of arguments a lot of people say there's no beauty there I'm like yes, there is wait to see it. And and I when I became more authentic and connected with my own aesthetic beauty, I changed my whole photography change then went from the outgoing guy guy guy TO BAM it just exploded. And it became something that I was thrilled with. And you know I've always loved my photography I've always loved shooting and but there's something became an added a component of that thrilled to, to ever to seeing creating, you're creating those images, I kind of felt very much like I was not even when I was as a fashion but I wasn't really involved in the creation on the photographs. I would have on my team come in, they build it they your city looks like this and that's it the hair guy that's the makeup that does that for that particular look. And they build it all up and then I would just come in and click the cameras sometimes I felt that it was like, great. We'd sit down, we'd have meetings. And so we're gonna do but it just there was it was not satisfying, but grabbing having a kid running by in his roller. And this is stirring as his walker. And it's like the first time he's walking with because he's able to move when he shoots across the room and he's squealing, you capture that it changes everything. There's a beauty there that you can't even imagine, right. So it's because we're so limited, of course, by our imaginations. But collectively, we can do anything we can imagine anything, we put all of our thoughts and our imaginations together, then then the ceiling blows off the roof. So I mean, all that was incredible to have those off, but everything else, but really what kind of so I was struggling with my photography, commercial work, and then trying to do more of this and traveling. And so I was traveling around the world, I was gonna be connecting with advocacy organizations, depending where I was shooting. And most early days with kids with albinism, we'd start a group of there wasn't a support group in that particular country or culture. But then we started working with many groups. And it was really exciting. But as I was doing this, I realized that there was there was so much more to do. And I couldn't do the commercial work. Because even if you're not shooting, you're, you're you're tap dancing, you're dialing your, your, your chole you're selling and, and the the salesman thing, I didn't want to do that. I just wanted to present the beauty. So that so when I stopped the sells, and I just started creating, it just changed everything. And it really kind of reflected in a, I was on an albinism fellowship conference a couple years after the Life magazine piece came out, and it was about and I was still kind of struggling with photography, but and commercial work. And I was fighting with my agent, because I was trying to extend each trip extra days so that I can shoot some work with the communities and the angel was screaming, I was getting in trouble. And I was at an ABA and there was one kid who did not want to be photographed, her name was Christina. And she had been a really seriously abuse even by teachers in the classroom environment because of her visual impairment. And her albinism, and I was like, I was like, well, that's alright, because I would never force anybody to be folding up ever. It's always there, you're always invited and, and she was no so. So but I'm there at a conference, I'm photographing all of her friends, and they're all like, having fun. And every time I look over, she's like walking by or she's watching from the corner, sneaking by or she's happened to be in that. And so finally I I dropped my my rule never begging and I said please like your maker. And she said, Okay. Last we had so much fun. And it was such a It was incredible. She was 14. And at the end of the shoot, she says and he said, you know, finally I can celebrate my albinism I feel beautiful, which is I realize, though, that the hatred and the abuse that I experienced every single day will never disappear. But what has disappeared is the hatred that I felt for myself. Wow. That's the last time I said I stopped all commercial work. The last day, I'm


Ben 38:06

very sure this is this is this is what I when I reflect on your work and reminds me of this quote by by Immanuel Kant that says that the our perception of beauty is sort of perception of freedom, right? And I feel like beyond everything that you do is this freedom that everybody is experiencing freedom from, from, from bias from stigma from all these things. And I think that's, that's really the powerful message of your work. Well, thank you. Let me let me ask you one more thing, because I you're talking about this transition from from commercial photography to positive exposure, and I feel like the leap of faith that you're taking is an important one to highlight because I'm assuming and then make tell me if I'm wrong, that the financial security was probably with commercial work. I mean, when you started this thing, it's like, well, how we going to make ends meet. And I do feel that for many physicians, it is similar when there are projects that are coming around, you're saying well you know, like this, this is not going to pay my bills, like I'm just going to stick to my clinical work I'm not going to get involved in that other project because it's going to take my time I'm not going to get anything out of it and you just drop it but you are the example that not only you should take that leap of faith but the meaning like you said earlier that you get out of it is so important. Can you tell us the you how psychologically how did it go through where you say alright, I'm going to want to make this leap where I'm going to give up my my livelihood to make up for this Yeah.


Speaker 3 39:30

I was odd because I did very well as a fashion photographer, but and but as commercial photographer, but I moving into this I was you know, a couple years ago I wrote 19 grant proposals and received 21 grant rejections extra ones leap of faith, you know, I again, I never didn't didn't start this so that I could be rich or that I can hang out with models. This was there was a beauty aesthetic and following your instincts. following what's important to you following what is what what is authentic to you, that's so important and always going back to what your origin is and where, and and understanding that as a even as a health care provider with you, you bring a lot to that table. It's not just the studies that the medical information that you gleaned, it's all the personality, all the the families that you met, and I made this leap. But I didn't, it was never real, I was gently carried forward by every single person that I've collaborated with. They're all very much a part of positive exposure. They're all very much part of who I am. And, and they gifted to me, there are beauty in which I then project on the next person that I'm photographing. So there's always so you bring that it's realizing that it's a human movement, that you're not alone, I didn't make this leap of faith alone, I made this gently carried on the shoulders of 1000s of people that I've met and worked with, over the years and listened to and created images with and it's an it's, that's the importance here is that it's not just about the bottom line of the photograph, or the image, it's really about, it's about creating the opportunity for us all, to have purpose to have all have representation to be included. You know, every photograph that I create, when our exhibitions are all very, very public. And they're like Grand Central Station that can be wherever, and museums and galleries and malls and wherever they happen to be. But each image is always as you can see, it's always it's always face mounted on glass. And so it's are highly polished Plexi, depending on where it is. But so as you approach this image, you see this gorgeous face. You see Ronan in Zagreb, and you see this, but you're also aware of your own reflection, which subliminally tells you this is not just about them. This is about all of us. This is our stories are now we're all worthy. So it really it's kind of trying to get out that then versus us. It's all of us are in here, and in this together. And it's our story that's important. And it's our honor, our story is great when it's when we step tell the stories, in unison together, it's our differences that unite us, you know, that's


Ben 42:09

so I think I think this is fascinating, because we've talked about how your work has impacted the individual, the individuals, but I like how your work has also sometimes impacted cultures and society. And I think, especially when it comes to your work with subjects with albinism, in Africa, when you went to Tanzania, can you tell us a little bit about what you encounter there when it comes to how society perceive them? And your work there? Because I think it's it's earth shattering?


Speaker 3 42:38

Yeah, well, in Tanzania, which, in East Africa, it's not just Tanzania. And it's a young boy who was just attacked recently, which doctors are saying, Bring me the bones of an albino, and I'll make a motion that will make you rich. So they're attacking these kids in these families on the way home from school, and they're finding courses with body parts missing and legs and genitals and, and teeth all just gone. And it's just like this. And it's not all people, it's just a few superstitions. It's a few pretty bad witch doctors that are presenting this. But we also find in those communities, some incredible people, there's an or several organizations that are out there, some NGOs and government organizations, students, families, parents, though, we're all working together to try and stop these atrocities by raising awareness. And I'm really challenging the stigma. There's a lot of stigma in with about people with or towards people with albinism, in communities and in East Africa, but actually throughout Africa. And it's really about raising that awareness and kind of creating, we created a map that shows the world map showing albinism of portraits of people from all over the globe, showing that it actually occurs. It's not a curse on your ability, which is often believed or curse on your family. And it happens naturally worldwide. There's a big movement right now to start a new albinism world Alliance and really kind of creating more opportunities to raise awareness and to really go after all stigma and you know what positive positive exposure we're looking at. And it's not just genetic syndromes or disabilities, it's work with communities that are at risk of stigma and exclusion. We just did a big collaboration with NYU Langone and and Lululemon on our transgender community, creating opportunities to have new dialogues, new conversations and new ways of going out and starting another whole collaboration with us Kings County, Kings County Hospital and our mental health and wellness center, and SUNY Downstate med students creating opportunities to challenge stigma with images and stories and narratives and film to challenge the stigma associated with mental health challenges. So we're really and finding we're entering when we're in Tanzania and East Africa, and we're hearing these horrible stories, but we're also finding where we're also finding incredible strength, and we're finding incredible, the call to action and really seeing how this really that's called Action is empowering communities to work together the who normally crossed the street when they saw somebody with albinism, but now they're suddenly now they're starting, especially if they were pregnant, they would do this. But now they're realizing that that's not that is in there and it's changing, it's coming back. They're coming back and they're supporting one another. And it's not we're not out of the woods yet. We're still there's still some horrible things going on. But it's there's, there's, there are a lot of organizations now there's one particular one under the same sun that's been doing tremendous ground field work and kind of providing scholarships. So now that the future doctors and lawyers and politicians and are going to have that we're getting it so people haven't, as we're getting these educations that are normally very difficult for anybody with a visual impairment to happen. Now they're getting them, and they're there. And they're empowering the community from the inside out and creating. And so it's like, it's like, it's just that representation is so important.


Daphna 45:58

Wow. Certainly, anybody listening, I think can tell the impact that you're having on some of these communities. And I wonder how this journey has changed you?


Speaker 3 46:12

Oh, wow. Some, I've learned to listen a lot. I learned a long day, I've learned to listen. But what changed me is the biggest change is to be authentic. And you have to understand to really see that beauty to believe. And to see that beauty. And and to always bring it with you. Because if you're especially if you're photographing kids, if you're not authentic, they will take you down and take you down. And it's sad, but it's still being more you know, as an artist being just their present authentic, again, with that philosophy that we all want to be seen. We all have the need to belong, and we all have a need to be heard. So that's all and these are also some incredible important. So I guess where it's empowered me to be to trust my own instincts, and that and the authentic beauty that I see. And not and present that and share that.


Ben 47:11

I don't know if this is an uncomfortable question or not. But once you made that leap towards positive exposure, what was the response if there was any response from the fashion industry?


Speaker 3 47:22

They were like, Why don't you love what you do? Really beautifully, though, my very first exhibition in New York City, which was a huge exhibit was in the lobby gallery of Conde Nast, which is all gets a lot more. It's GQ. It's all the magazines. And that was it was the lobby gallery exhibit. So that was pretty amazing. But you know, it's a slow process with the fashion industry and its, but lately, the incredible models like Winnie Harlow right now has been a Lago and it's not saying I'm suffering with vitiligo are a victim of vitiligo. I'm living with Vidya logwin She's stunning. She just had a Greek Vogue cover and she's, you know, it's just but it's, it's changing. And there's now there's every day it's not so unusual to hear that this model was represented and did the retinue the catwalk and the runway and this model was there with this disability and that and it's coming more where it's not out there completely Yep. And it's getting there more and more with people like you like Judy human who's out there doing like her thing and of course crip camp, and she's just the the greatest the or the like one of the biggest human rights activists for disability rights and and but old school like protesting and striking and protesting shutting down federal buildings in San Francisco and and then we have people like gate and MIT are out so better apart from Stranger Things, who's who writes in his in his each, every episode, every season, he writes into misconduct that he has to mentioned, Claudel, cranial dysplasia, Weiss, and using his social media platform to raise awareness of not just clinical cranial dysplasia, but rare disease, and very active and so that we have these modern day activists that are empowered by the younger, the older, the tried and true activist, and they're, and we're learning from all of that it's a very exciting time, to be part of that to be listening and to, to provide the space that's necessary. And understanding how do we it's not going to take, you know, all the disability community to step up and scream and yell it's going to take but it's also about finding allies, and getting all of our aisle its ally ship, and it's how do we get together? How do we how do we create a better world by using our own talents together? That's awesome.


Daphna 49:34

What else is there to say? That's definitely, definitely it. I am so grateful for you and the work that you are doing. I wonder like, what are the next steps? What are the things that you want to do that you haven't done yet?


Speaker 3 49:55

We're working on Socolow. We're working on them very it's I'm very interested right now of course, but no To help, psychosocial instability, we're really creating a big space there right now. But we, you know, we have a gallery we opened in East Harlem and on Museum Mile at 100. And at the northern end of Central Park, and it's a multimedia gallery space performance space it's creating, it's fully accessible. But right now it's not. So we had a big there was a flood because of storm Ida, and the shutdown or elevator. So now we're, if we're not going to be open to everybody, we can be open to anybody. So we're just now getting that together. So that's going to put us on pause for a few months, staying within our, in our, in our virtual space at the moment, keeping the keeping us up very active, and doing things outside. Like we just put a four storey mural of the word love and over 100 languages in the courtyard, and we're doing public art exhibitions in collaboration with our artists and residents and school students through the Department of Education here in New York, and creating ways to interact and starting new conversations and dialogues. But um, is the we really want to build this exhibition that built this artists and residency program. I think that's so important. And bringing a lot of our performers with disabilities that are artists with disabilities and mixing them not just having them performance artists with disabilities, but creating a platform for them to meet and work and collaborate with other people of the same. Disabilities eventually just isn't seen. It's just talent and its performance and its art is seen and disability is important. And we identify that however we want to be identified, but at the same time, it's also creating another vision, another way to see art, and to experience that, and really to have a better appreciation of all the work that's coming from our often overlooked communities and people with disabilities.


Ben 51:47

That's, that's awesome. I guess. I guess we'll we'll, we'll keep keep an eye on on things coming out of this. This is awesome. Rick, thank you so much. This was an awesome interview, I think. I think people are going to be very interested in your work and very interested in taking part in initiatives that you have ongoing, we feel honored and humbled that you were on with us today. We feel that the work you're doing is is not just important. It's it's table. It's an integral part to the to the change that we need to see in medicine and in society. So thank you,


Speaker 3 52:21

and honor. Thanks for having me. Thanks for the work you're doing. Yay.


Ben 52:28

Thank you. Thank you so much. Thank you for listening to the incubator podcast. If you'd like this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcast, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot v dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you


Transcribed by https://otter.ai


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