Albinism

© Stephanie Sinclair

Albinism is a genetic condition that reduces the amount of melanin in the skin, hair, and eyes, raising the risk of poor eyesight and skin damage, as well as discrimination and prejudice. My husband and I were already in the process of trying to adopt a child internationally when we began meeting the generous, kind, talented people profiled in an article on albinism that was later published in National Geographic magazine. Almost reflexively, we began looking specifically for a child with albinism.

Our children, Lotus and Forest, came to us understanding that they look different and we have had to instill in them the importance of daily sunscreen use given that people with albinism have the highest rates of skin cancer in the world. It took longer for them to comprehend that their legal blindness was also a part of the unique genetic condition. As they began to understand the limitations of their visual acuity, the time was ripe to help instill in them some long-term tools for adapting to a sighted and pigmented world. It may be inevitable that the world will define them by their conditions, but we don’t ever want them to define themselves in that way. Our goal is for them to understand that everyone has value and interacts with the world in different ways. Once they understand that, they can focus on how best to accentuate their strengths and shore up their weaknesses. Just like every other person on the planet has to do.

To help Lotus and Forest feel beautiful and celebrate their differences, I partnered with some friends in the albinism community and the NYDG Foundation for a photo shoot to honor those with the condition on June 13, International Albinism Awareness Day.