Public Radio International Series on Albinism Worldwide Features PE

While the trials of those charged with the killings have been proceeding in Tanzania and Burundi, people with albinism still face discrimination in Africa.

Public Radio International has been featuring a series on albinism worldwide. For part two, reporter Phillip Martin interviewed Rick Guidotti about albinism.

Listen to the recording of part 2, which includes Rick’s beginnings with Positive Exposure, Peter Ash from Under the Same Sun, and the portrayal of albinism in cultures around the world. There’s a great discussion of race, albinism and stigma, continuing from part 1.

Here’s a quote from the first installment;

“I can tell you that throughout the whole area of Africa, beliefs exist that people with albinism are cursed, that the mother had sex with the white man, that she had sex with a European ghost, that these people are evil, that they’re possessed, that they’re substandard, that the disease is contagious.  There’s a host of myths that prevail for hundreds of years for people with albinism in large parts of Africa.”

See the transcript of the first installment. See galleries 1 and 2 of Positive Exposure images from the PRI Flickr stream.

Intern Update – Hemispherectomy Family Reunion

Hello everyone! This is Anna, the other intern. The Positive Exposure team just got back from the AMC conference, and Rick will be off again this weekend—the action never stops!—but I wanted to take a minute and reflect back on the Hemispherectomy Reunion, the first conference that I attended with PE, which was held in Baltimore two weeks ago.

The conference was very kid-oriented, since hemispherectomies (surgeries to remove half of the brain, usually in treatment of seizure disorders) are relatively new, and performed mainly on young children. Some of my favorite moments happened while watching or playing with little ones in the hallways—peek-a-boo in cabinets, comparing of Spiderman leg braces, and lots of gorgeous smiles!

The older kids could be found shooting hoops outside, leading discussion groups, or catching up with friends from past reunions. The “hemi” young adults that we met are pursuing all sorts of interests, from carpentry to speech pathology to clowning, and it is clear that many of them are important role models for the younger kids and their families. Open communication seems to be a theme of this community (a community that includes a number of physicians, it might be added). It was wonderful to see this modeled by the many parents who sought out the perspectives and advice of the young adults.

The emotional high of the weekend came on Saturday, when everyone rallied for a talent show. Singing, joke telling, and a stunning dance performance were accompanied by a slide-show of photos that Rick had taken the day before. There was, needless to say, lots of applause and shining eyes.

In my own experience as a participant at conferences like this one, it’s always been about information sharing and support—support for the physical and social challenges of living with a particular medical condition. This was true at the hemispherectomy reunion, but helping Kim conduct interviews gave me a new appreciation for what lies in and beyond all the challenge talk. There is a wealth of down-to-earth wisdom in communities liked this one. The word “resilience” came up a lot, and a number of people made comments such as “Life can be challenging and unexpected, for sure, but who’s to say what life ‘should’ have been?”

What a great weekend! (and brilliantly organized). It was an honor to hear everyone’s stories. I can’t wait to see where we go from here, as we continue to develop the video work, along with Rick’s photography, and find new ways of getting all this beauty out into the world.

Intern Update – AMC Support Convention

I joined Rick and Kim at the AMC Support convention in Philly this weekend. AMC (Arthrogryposis Multiplex Congenita) is a genetic condition that impairs joint mobility. Kim and I spent most of the day interviewing different families and individuals: we spoke to parents of a toddler with AMC, an art teacher/motivational speaker, even a college student who used her experience in Communications to create a disabilities advocacy website at her school. Lots of inspiring stories, beautiful people, and of course, adorable kids! Between the dangling donut-eating contest and the scavenger hunt, you’d think the younger attendees would’ve been ready for naptime an hour into the convention but no — still PLENTY of energy left for painting with Theresa.

We had a lot of fun painting, jamming out on the piano, filming, and making new friends. I’m working on the conference footage right now, it’s looking good so far. Hopefully editing won’t take too long and I’ll get it online soon. In the meantime, everyone should check out the AMC Support website and Luca “Lazylegz” Patuelli’s site, too. Lazylegz is amazing… I wish I had a cool nickname/breakdancing skills. Keep checking back on this blog and our Facebook page for PE updates!

- Claire

The whole team!!

Originally uploaded by P_E

At NY NY!!!!

Originally uploaded by P_E

On the strip with chromosome 18 registry & Kartemquin!!

Originally uploaded by P_E

With film crew on our way to the striip in Vegas!!!

Originally uploaded by P_E

Positive Exposure on the West Coast!

Hi All: I am currently in LA and just attended the ICAN conference at Universal Studios. ICAN represents and supports individuals living with Anophthalmia and Micropthalmia.( www.anophthalmia.org) I met so many amazing amazing amazing kids. Such a powerful and inspiring experience.. I will post a Gallery on our site soon..

This weekend I will travel to Las Vegas to attend the Chromosome 18 Conference. Cant wait as I have been working with these folks for about 10 years now and it’s like going home to visit my family and friends… I will also begin collaborating with Kartemquin FIlms on a Positive Exposure documentary. I’m so honored to work with such a team.. Check out their site at: www.kartemquin.com
Here is the work in progress blurb about the documentary:

Positive Exposure
Director/Producer: Joanna Rudnick
Executive Producer: Gordon Quinn

From In the Family Director Joanna Rudnick, Positive Exposure will follow former fashion photographer Rick Guidotti as he skillfully employs his lens to redefine beauty. Guidotti photographs children who are often relegated to the shadows because of elongated or oversized limbs, cleft palates, facial markings, lack of pigmentation, and other differences that make some turn their heads. His images are not the grotesque medical studies of the past; they are celebrations of life. Kartemquin Films is partnering with The Genetic Alliance and Rick Guidotti to tell the story of how one man’s lens can change the way we see and experience beauty.

Second Issue of Positive Exposure Newsletter

The second edition of Positive Exposure’s newsletter is going out today. If you’re not on the list, sign up now to receive The ViewFinder: At the Frontier between Art and Genetics.

The newsletter is a combination of Rick Guidotti’s photography, Positive Exposure news, interviews with both the arts and genetics communities, and reader-submitted content.

In issue #2:

* Summer Kickoff from Rick
* Interview with a Mom and Genetic Counseling Student
* News and Gallery from Kerala, India and Braille Without Borders
* New gallery from Tanzania

Let us know what you think, send us your story ideas, and pass the word along to your friends.

–Kim

Hello From Tanzania April 2009

I am here in Tanzania with the Under the Same Sun Team. So many great things happened this week.

We started out at the new Under the Same Sun office in Dar Es Salaam. Having this local office, we will be able to disburse support to the albinism community as well as create, develop and implement public awareness programs managed by a team based here.

Under the Same Sun Office in Dar Es Salaam

Under the Same Sun Director, Samwel Mluge, at his desk.

We visited the cancer clinic and met several patients with albinism.

One of the kids at the cancer clinic.

Awaiting treatment for skin cancer.

We met with several powerful officials to partner on our fight against these horrible murders in Tanzania. Vice President Shein Prime Minister Mizengo Pinda.

Vice President Shein

Prime Minister Mizengo Pinda

On Saturday, we traveled Mwanza in the lake region where many of the murders are taking place. We visited the former home of a young boy whose family was murdered in front of him. The murderers were there to kill his sister with albinism, the family tried to stop them and were murdered as well. A horrible, horrible story.

P... who witnessed his family's murder in Mwanza.

We also returned to the school where many children with albinism are in hiding.

Students at school in Mwanza.

student with a lollipop

Bibiana

On the road in Mwanza

More from the school in Mwanza.

We traveled to the school with Bibiana, Al-Shaymars adopted daughter who was attacked 2 years ago and survived. She lost her leg and 2 fingers… She is so AWESOME!!!

On Sunday, we attended a church service where Peter Ash discussed the violence and asked for spiritual and community support to end these crimes.

The blessing!

Congregation!!

There were over 8,000 people in the congregation. There was a formal blessing of all people with albinism. It was amazing! On Monday, Under the Same Sun had the official opening in Tanzania.

On Tuesday the Under the Same Sun Team hosted a pastor conference to reach out to the communities throughout Tanzania.

Pastors

The outcome: MAY 31 is designated as National Prayer for People with Albinism and memorial for those that have lost their lives. We will make this an International effort by inviting all of our friends around the world to remember the victims and their families.

A performer from the ALbinism Dance Troupe.

A very beautiful new friend!!

It's official. Under the Same Sun OPENS in Tanzania.

We will change the way people with albinism are perceived in Tanzania!

I am traveling to India this afternoon to visit the director and founder of Braille Without Borders and to tour their Institute create to empower people that are blind or visually impaired. I am so excited. More later… read up on Sabriye and Paul at www.braillewithoutborders.org

More Later: From Kerala India