On Beauty

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Images

Boys with Albinism laughing in Mwanza Schoolyard, Tanzania

Student with Albinism, Mwanza Schoolyard, Tanzania

Billy, a young man with Marfan Syndrome in the pool

Budget

Raised to date: $1,000,000.00
Estimate to complete: $-1,894,967,296.00
Total Estimated Budget: $-1,794,967,296.00
The budget numbers above are accurate as of

Status

Production

Media Type

Video

Project End Use

Key Personnel

Joanna Rudnick
Director/Producer

Joanna has been working as a producer with Kartemquin Films since 2003. In late 2008, she left the position of Director of Development for the company to pursue filmmaking full time. She is currently developing a new film with Kartemquin on photographer Rick Guidotti, who left behind the world of fashion photography to photograph individuals with genetic conditions.

Joanna is also producing Prisoner of Her Past, the story of Chicago Tribune journalist Howard Reich's attempt to uncover his mother’s tragic Holocaust childhood in order to understand why she is reliving it 60years later; and A Good Man, a feature-length co-production with Kartemquin, the Ravinia Festival, Media Process Group and American Masters, following the creation of a major dance piece by the choreographer Bill T. Jones on Abraham Lincoln to premiere at Ravinia in September of 2009.

Joanna produced and directed In the Family, her personal story of testing positive for the hereditary "breast cancer" gene and an exploration into the psychological, social, legal and ethical challenges surrounding predictive genetic testing. The Emmy-nominated film premiered at Silverdocs in 2008, was broadcast nationally on PBS' P.O.V. the same year and was a finalist for the NIHCM Foundation’s Health Care Radio and Television Journalism Award.

Before coming to Kartemquin, Joanna co-produced a film on war photographer Robert Capa for the American Masters series at WNET in New York. Robert Capa in Love and War was broadcast on PBS and the BBC, premiered at the 2003 Sundance Film Festival and was the presenting film for the 2003 Emmy award for Outstanding Nonfiction Series.

Prior to her role on the Capa project, Joanna worked for American Masters for three years contributing to numerous films including Juilliard, Ella Fitzgerald: Something to Live For and Joe Papp: In Six Acts. Joanna also worked to help research and develop a 6-part series on the American novel, funded in part by the National Endowment for the Humanities. Joanna received a Master’s degree in Science and Environmental Journalism from New York University and a Bachelor’s degree in English from Northwestern University.

She has written for several publications including Audubon Magazine, The Artful Mind, The Berkshire Record and Humanities. Prior to her work in production, Joanna served as an Americorps volunteer, implementing project-based environmental curricula in the San Francisco Public School System.

Joanna is currently an adjunct professor at Northwestern University's Medill School of Journalism.

Gordon Quinn
Executive Producer

Artistic Director and founding member of Kartemquin Films, Gordon Quinn has been making documentaries for over 40 years. At Kartemquin Gordon created a legacy that is an inspiration for young filmmakers and a home where they can make high-quality social-issue documentaries. Kartemquin's best known film, 'Hoop Dreams' was executive produced by Gordon. The film follows two inner-city high school basketball players for five years as they pursue their NBA dreams. Its many honors include: the Audience Award at the Sundance Film Festival, the Robert F. Kennedy Journalism Award, and an Academy Award nomination.

In the words of Jonathan Rosenbaum, film critic for the Chicago Reader, "Kartemquin's work teaches you to think about politics in both a very practical and entertaining way." This is evident in Gordon's early work, 'The Chicago Maternity Center Story,' about the struggle to save Chicago's historic neighborhood-based home delivery service; 'Taylor Chain,' 'The Last Pullman Car,' and 'Golub' a documentary on art, politics and the media, featuring American artist Leon Golub.

In 2004, Gordon executive produced 'The New Americans' and directed the Palestinian segment of this intimate seven-hour PBS series that chronicles the journey taken by new immigrants to this country and the obstacles they face once they have arrived. The series received many awards including the IDA Best Limited Series Award and the Council on Foundations Film FEstival Award.

He is currently directing a film on delayed posttraumatic stress syndrome in a childhood Holocaust survivor, 'Prisoner of Her Past' and co-directing a film on the development of Bill T. Jones' latest work inspired by Abraham Lincoln. Gordon continues to serve as executive producer on a host of Kartemquin projects.

A longtime advocate for robust public dialogue, Gordon promotes the ideals of fair use daily by encouraging new and seasoned filmmakers alike to educate themselves on its tenants and by taking on frequent speaking engagements to inform the larger media and legal world. He has served on the boards of several organizations including the National Coalition of Public Broadcast Producers, the Citizen's Committee on the Media, and the Illinois Humanities Council.

Outreach/Engagement Plan(s)

To educate and promote understanding, we will partner with teachers to show portions of the film in K-12 classrooms that have students with genetic conditions. Mirroring the campaign of Gilda’s Club to sensitize students in classrooms where children have cancer, we will use Rick’s images and our footage to do the same for children with genetic diseases and disabilities, and their peers. We believe our video will have a tremendous and lasting impact, causing children to treat their disabled peers with a greater respect and as equals. Piloting a program in the Chicago Public School system, and eventually expanding into nationwide implementation, we will partner with teachers to develop this educational initiative, which will consist of a thorough teaching guide that will accompany portions of the film. We will approach the National Institute of Health’s Human Genome Research Institute as a partner in educational outreach. This emphasis on education represents one of Kartemquin’s central, longstanding missions, one undertaken by each Kartemquin film and its corresponding outreach program.

We will also edit short video segments, or “webisodes”, that are topical and character-driven to allow us to assemble a growing community, to raise awareness about issues covered in the film, and to build to the final film. Working with our main outreach partner Genetic Alliance, we will post the webisodes to their site, reaching their established community, and growing a satellite community through various online networking sites. One of our main goals in capturing Rick’s work and the voices behind his incredible photographs is to create powerful media tools that will breakthrough our collective fear of looking at and listening to people with disabilities. In the webisodes, we will ask challenging questions about where this fear comes from, and hear from the children themselves about what it is like to live with difference.

Additionally, consistent with Kartemquin’s mission to stimulate real social change, we will work with Genetic Alliance to use the film as part of their ongoing advocacy campaigns for health-care reform, to raise awareness about orphan diseases, to lobby for increased funding for better diagnosis, treatments, interventions and cures for orphan genetic diseases, and to stop the terrifying murders of adults and children living with Albinism in Africa – a current focus of RickGuidotti’s work.

Lastly, we will not only give voice to those with genetic conditions in the film itself, but they will also speak directly to our audiences - at town hall screenings, festival premiers, and on discussion panels across the country. They will tell us what changes they would like to see in the attitudes and policies in our culture. Rick calls his subjects "ambassadors for change": "And that's how we're going to divide and conquer, that's how we're going to change the way people see difference."

Funders

Name	Amount	Date
Private Family Foundation	$5,000.00	06/01/2009
Genetic Alliance	$5,000.00	06/01/2009

Location

1901 West Wellington
c/o Kartemquin Films
Chicago, 60657

See Google Maps

Short Synopsis

ON BEAUTY is a documentary film telling the story of how one man's lens can change the way we see and experience beauty around the world.

Description/Treatment

“The children suffering from genetic diseases live trapped in a particular hell – they face ferocious uncertainty, fear of disability and death,and a segregating difference. Positive Exposure not only introduces to the world the stunning beauty of the ‘affected individual’, but also engages the participant in a process that elevates their self-esteem for life."

-Sharon Terry, CEO & President, Genetic Alliance

ON BEAUTY is a documentary film and companion social engagement campaign that explores a critical social question: What is beauty? We examine this topic through the lens of Rick Guidotti, who left behind a successful career as a New York fashion photographer to take pictures of children who are often relegated to the shadows because of elongated limbs, cleft palates, facial markings, lack of pigmentation, and other differences that make some turn their heads leading to a lifetime of painful stigma and low-self esteem. Rick's images are not the grotesque medical studies of the past; they are windows into children with unique personalities, opinions and senses of humor. As Rick says, "Put a light on anyone of these kids and they shine. Then get the hell out of their way because there's no stopping them."

In 1997, after spending fifteen years working for clients like Yves Saint Laurent, Elle and Harpers Bazaar – in a radical move that surprised his colleagues in the fashion world – Rick left the world of fashion photography after a chance encounter with a teenage beauty at a New York City bus stop. Who would stop this man who had already photographed the most beautiful women in the world? The young woman, later he would find her name was Margaret, had zero pigmentation in her hair and skin, caused by a genetic condition called Albinism; yet her beautystruck Rick like no other model he had photographed in the past. Captivated, he rushed to the nearest Barnes &Noble bookstore:

“Then I ran to medical textbooks and found kids with Albinism in doctor’s offices with a bar across their eyes. I found a grotesque shot of a bright red eye, and she didn’t have red eyes… They were images without humanity, images of sadness, of illness, of sickness, of disease, of despair,and that’s all I saw… just horrifying, horrifying images. And I thought,“There’s got to be something else. There’s got to be another way…isn’t there a better way to show it than this?”

These are kids, not diseases.

Disbelief and disgust turned to inspiration and motivation, and before long, Rick set out to show the world the brilliance he saw in Buffy by photographing individuals, mostly children, with genetic conditions. He created the not-for-profit POSITIVEEXPOSURE, an organization that examines beauty through a new lens – as Rick describes it, “the metaphorical lens through which to explore social attitudes and behavior toward all difference.”

Rick embraces difference and seeks it everywhere he goes, photographing children with diseases that have long, unapproachable names unknown to much of the general public – Marfan Syndrome, Sturge-Weber Syndrome, Chromosome 18 Disorder, 222q11.2 Deletion Syndrome, Alpha-1 Antitrypsin, Proteus Syndrome,etc. These children have nearly identical genetics to most people, except for a few small changes in the DNA code leaving them with overt and sometimes painful physical changes, and even more tragically, low self-esteem and self-loathing.

But when Rick sees their childlike enthusiasm and innocence and puts it in front of his camera, he instills in them a new found confidence. Their faces light up. Huge smiles spread across their faces. He showers them with genuine love and verbal encouragement:“You’re beautiful,” “You’re amazing”, “Work it”, “Give it to me”, “What a greatshot!”

Rick has taken his message of celebrating the "spirit of difference" around the world, focusing much of his international work on children with Albinism in Africa. There, he has used his photos to educate local communities about Albinism and to combat horrific discrimination and violence resulting from a belief that individuals with albinism hold special medicinal value. In Tanzania– where albinism occurs at rates as high as 1 in 3,000 births (versus 1 in20,000 in the U.S.) – people have been slaughtered by witch doctors for their bones, which are considered to have supernatural powers and used in magic potions. Rapes also have been reported in Zimbabwe, where many believe that having sexual intercourse with a person with Albinism can cure HIV/AIDS.

At this time the filmmakers are raising funds to travel with Rick to Africa where he will hold the first exhibit of his work ever in Nairobi with the Albinism Society of Kenya, an organization he founded many years ago.

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