By Court Stroud, Contributor / Forbes
Photos: Stephanie Sinclair / NYDG Foundation

Diandra Forrest says she lives a colorful life. The native New Yorker is the first talent with albinism signed by a major modeling agency. Albinism is an inherited condition which diminishes the amount of melanin pigment formed in the hair, skin and eyes. It occurs across the planet. In the United States, approximately one in 18,000 people has a form of the genetic trait. In other parts of the world, the rate can be as high as one in 3,000.

People with albinism are sometimes marginalized by society. In some cultures, they’re even persecuted and hunted. During the past ten years, there have been more than 600 reported attacks, including killings, against people with albinism.

In this interview, Forrest shares about her efforts to change perceptions. She is now one of the faces of a new global campaign to bring greater inclusivity for people with albinism. The yearlong effort, sponsored by the New York Dermatological Group (NYDG) Foundation and the United Nations (U.N.) Independent Expert on Albinism, begins this month.

What was it like for you as a child?

I’m from The Bronx in a predominantly African-American and Hispanic neighborhood. I felt like the odd person out because I’m so fair. My hair is blonde. I have light eyes and nystagmus [a condition where the eyes move involuntarily back and forth]. I was targeted and made fun of for the way I looked. “Who’s this white girl with black features?” People would call me “Casper” and “Snow White,” and say, “Why are you so white? You look weird.” Making friends was a struggle.

Is it especially difficult to grow up with albinism in a community of color?

Yes, because of the lack of education. Even my parents didn’t know what albinism was when I was born. My mom was like, “Well, she’s beautiful, but who’s baby is this?”

Also, it’s a severe contrast. My father is very, very brown, and so is my older brother. To have brown family members and pale family members, and to say, “We have the same parents,” it shocks people. They’re like, “How is that possible?”

What was your reception first like in the modeling world?

I was 14 and met a woman designer, Shannaine Eans. She was having a fashion show and wanted to introduce me to a runway coach. I was excited but also nervous. It was a room full of beautiful girls in heels. I walked in and he was picking them out and pointing, watching their walk, critiquing, and giving advice. I was waiting for my turn, but he wasn’t even paying attention. I got more nervous. He pulled my friend aside and was like, “Why is she even here? This girl will never make it in fashion. I don’t want to waste my time with her.”

She kicked him out and said, “The class is over. How dare you!” Shannaine told me word for word what he said. “I want you to know that there are going to be people who don’t believe in you, but you need to believe in yourself. You’re beautiful, you’re strong, and you’re going to make it. Use this to drive you.”

How did you break into the industry?

While I was in college, I ran into a photographer, Shameer Khan. I was shopping on 34th Street. He asked, “Have you ever thought of modeling? You should.” He shot my photos and took me into see Elite Models in January. By February, I was walking in European Fashion Week.

You’re an essential part of this human rights campaign with the NYDG Foundation and the United Nations. How did you become involved?

National Geographic photographer Stephanie Sinclair did a yearlong story covering albinism worldwide. She’s good friends with Stephan [Bognar, Executive Director of the NYDG Foundation.] The foundation supports children with albinism in Rwanda by creating scholarship programs, paying for schooling, and helping students find work after they graduate. They wanted to do a major campaign kicking off on International Albinism Awareness Day.

Albinism means a lack of pigmentation, but our lives are still colorful. The “ColorFull” campaign celebrates albinism on a large scale. That’s why we went to Times Square.

Talk about that experience.

This was the first time there’s ever been a major billboard celebrating albinism. It was so surreal. We finished speaking at the U.N. and fifty of us, all with albinism, walked over as a group to go look at the billboard. People were shouting, “Who are you guys? Are you celebrities? A singing group?”

So, we were waiting. Then the billboard showed up. It was beautiful to see the joy in everyone’s eyes.

In the second phase of the “ColorFull” campaign, we’re going to take it to L.A. with Shaun Ross, then Hong Kong with Connie Chiu, and to South Africa with Thando [Hopa]. These are all models with albinism. We’ll end up back in New York next June 13th.

Tell me why you want to be part of the “ColorFull” campaign.

One of the main reasons I wanted to be a model was to redefine the way people saw albinism. I wanted people to say, “Wow, this is beautiful.”

Maybe four years into my career, I learned of attacks across Africa. There are witch doctors spreading the myth that the body parts of people with albinism are magical. The witch doctors use them for healing purposes.

Stefan told us about a phone call that he had gotten from a family, I believe in Rwanda, the morning of the event. They needed help for two children with albinism in a home. The neighbors had given their contact information to body poachers who were trying to break into the house to take the children. What NYDG is doing, they’re creating scholarship funds, but they’re also creating safe houses for people with albinism.

What advice can you give to a young person with albinism—or anyone who feels like they don’t fit in?

What helped me through my hardest times was finding out who I am as a person is more than what’s on the surface. Hone into that and love yourself. No matter what other people say, no matter how other people are looking at you, find a place of comfort and confidence within yourself. Don’t try to fit in. Stand out. Stand strong.