Having albinism is such a unique experience. Most people don’t understand totally, but I have wonderful friends who try to accommodate me. For example, because of my photophobia, the sun really hurts my eyes. Sunglasses help a lot, but I feel like I can’t see as well in them. My friends let me sit facing away from the sun or even with my back to the windows in a restaurant.
Almost without thinking about it, everywhere I go I have to plan for where the lights are going to be. At restaurants, I find the one angle that won’t have a glare when I sit down with friends. Those bright lights at most businesses and offices make me so tired. I even like it when light bulbs burn out sometimes so that there’s less light.
However, I like my screens to be very bright, probably for the high contrast.
I have difficulty stopping far away, and I have nystagmus, which means my eyes shake, but these symptoms are not severe compared to most people with albinism.
How albinism has affected me the most is socially and how I see the world. When I was in junior high and highschool, I got so self- conscious about how white my skin is and how much I stand out in crowds. I even stopped wearing shorts for a few years.
I’m thankful for albinism because of how it helps me view the world– everyone with disabilities needs an advocate. Talking about disabilities can help them become more familiar and less scary and awkward. Don’t be afraid to ask me questions! I wish you would ask me an awkward question in the comments rather than just wonder and never feel comfortable talking to me about it.
Most of all, I’m glad God gave me albinism because of my passion for helping other people with disabilities and for the empathy I’ve gained from my own experiences.
On this International Albinism Awareness Day, ask someone a question about albinism, tell someone about albinism, or research it!