Hello! My name is Olivia, I’m 15, I’m from Minnesota and I have Albinism. At first glance I don’t look like someone with albinism but looks can be deceiving. I in fact have oculocutaneous albinism type 1B. This means that my skin and eyes are affected by Albinism and my hair is not. I’ve never tried to hide the fact that I have albinism, and I’ve never let it control my life.
I’m a sophomore in highschool. I’m really good at school, a year ahead in math, honors classes, 3.9 GPA. I am also the treasurer for the student council and for RISE (responsible individuals striving for excellence) club. RISE club is a positive community norms group that promotes making safe, healthy and positive decisions against alcohol and substance abuse. I am also in band, on my school’s speech team, debate team, and track team. I also dance for an amazing studio where I was blessed with my amazing coaches who are super accommodating and understanding with my low vision. Dancing with albinism comes with some of its own struggles, so if there are other low vision dancers reading this, what tips do you have?
Most people don’t know I have this condition because I look “normal” so when somebody asks why my eyes shake or why I’m putting pounds of sunscreen on, I’m very open to talking about it. Since I don’t have the same attributes other albinos have, I don’t look like I have albinism, and sometimes I feel out of place in our society. I don’t have the luxury of laying outside and getting a tan, or being able to sit in the back of the classroom and still be able to see the board. So when I come to the NOAH conference you’d expect me to feel like I’m with “my people” but I occasionally feel like I don’t belong based on my looks, then I remember that these are “my people” and these are the people who really do understand what I have to deal with. I’m forever grateful for NOAH. NOAH has provided me with a community of people who understand my daily struggle, created a space where I feel like I fit in, and given me friendships that will last a lifetime. Relationships with NOAH community members have a special place in my heart, they’ve helped create a space where I feel like I belong.
Something else people don’t know is that not a single genetic test has proven that I have albinism, which Is annoying, but it’s also why I gave up on genetic testing. I have never once let this silly little condition take anything from me so why would I start to let it take my happiness and change it to frustration after getting inclusive results again and again? I won’t, that’s why I gave up. I had enough trust in my providers when they clinically diagnosed me with OCA1B at the ripe age of 10 weeks old (my older sister also has OCA1B and I was presenting with the same symptoms, that’s why I was diagnosed so young). I don’t need a blood test to tell me that I have this condition, I trust my providers.
I can’t decide what you take away from this but regardless of who’s reading this, remember to not let a single thing control your life. Don’t let what somebody says limit you, I was told I would never be able to drive but I got my permit in June. I am proof that you can do anything you put your mind to.
