Each year, June 13 marks International Albinism Awareness Day (IAAD). IAAD aims to raise awareness about people who live with Albinism and also counter the continued stigma and misconceptions people with Albinism continue to face.
This year IAAD carries the theme “Made to Shine” and aims to highlight the achievements and contributions made by people with Albinism across the world.
At Vision Australia, we’re marking IAAD 2020 by highlighting three separate stories, illustrating how life has changed in Australia for people with albinism over the last five to six decades.
Grant, Matt and Rebecca have each given us a first-person account of living with Albinism in Australia and what that means in terms of education, their career, day to day life and more.
When I was born there was little public awareness of albinism and I was also the only one in my family with the condition.
My parents were confronted with the obvious concerns of the long term impact of albinism on vision and what that would mean for my schooling, career prospects, having my own family and generally whether I’d ever be able to live independently.
Thankfully they were introduced to the RVIB, now Vision Australia, at an early stage who demystified the condition and provided support and examples of other children and adults that had navigated this sometimes complex path through schooling and in to employment.
My parents made every attempt to treat me no differently to my siblings. Comments like “find a way as we won’t always be there to help” were common and still resonate with me today.
Despite these supports, growing up in the 1960s and ‘70s did have its challenges.
If my parents were ever concerned about my future as a child with albinism, they certainly hid it very well.
I knew I was different from a young age. The event that solidified this was in first grade when I cut my hair during class one day at school. The teacher instantly knew it was me, not because I’d done a bad job of chopping my hair, but because I happened to be the only person with white hair in the classroom, and it was now all over the floor.
While I was different, I was never allowed to let my disability define me. My father would always say, “It’s not about the disability, it’s about the ability.” I still think about that to this day.
Throughout school, I always felt I had something to prove, so as to not be defined as simply “the albino”.
Rebecca, mother of Ethan and Samuel
Ethan was diagnosed with oculocutaneous albinism in 2011 when he was 10 weeks old. The opthalmologist took one look at Ethan with his white hair and within minutes checked his eyes and confirmed the diagnosis of albinism. The lack of pigment in his hair, skin and eyes as well as his nystagmus were some of the clear signs of albinism.
We were told Ethan is legally blind, along with this information we were given the advice to always cover Ethan’s skin with sunscreen and protective clothing and for him to wear a hat and sunglasses when outdoors.
Our first concerns were in regards to Ethan’s vision and the impact this would have on his life. What would this mean for school, friends, sports, work, and life in general?
Just before Ethan turned two we were blessed with twin boys. Samuel was born with albinism, while Christian was not.