Demystifying Albinism – Real Life Albinism Role Models
As a parent of a child with albinism, it’s been difficult over the years to find real life role models for my son to follow.
Role models can be hard to come by when you consider just how rare albinism is.
Latest UN figures put the average occurrence of albinism at roughly 1 in 20,000 people worldwide. With 7.4 billion people on Earth that means there are approximately 370,000 people with albinism around the world, 1,200 of whom are estimated to live here in Australia.
That’s not a lot of people when you think about it.
Prior to my son’s diagnosis I’d only ever encountered one other person with albinism before. And while I’ve met many people with the condition online, it’s been years since we met others with the condition in real life – something I’m hoping to rectify with our upcoming local meetup for albinism awareness day.
However, there are notable people with albinism around the world, some of whom are featured on the UN’s People with Albinism: Not Ghosts But Human Beings website. This site was established last year in the lead up to the first ever International Albinism Awareness Day and features the personal stories of people with albinism, as well as parents, specialists and supporters.
Here are 6 notable people with albinism – people who are real life albinism role models for my son to look up to and emulate:
Gareth Ward – NSW MP for Kiama
Credit: Illwarra Mercury
I first saw Gareth at a local government conference in 2004, a few months after we received my son’s diagnosis. I was too scared to go up and introduce myself to him (and a little worried that he may not have had albinism at all!) but seeing him as an elected member of government opened up my eyes to the life my son could have, even with albinism. He helped me see that anything was possible.
Shari Parker – Australian medical practitioner & rehabilitation physician
Shari is the driving force behind the Albinism Fellowship of Australia, a group that provides information and support to families (like ours) living with albinism. She has again shown the many possibilities open to my boy, even with reduced vision. She is a fantastic advocate for all Australians living with albinism and is the current President of the World Albinism Alliance, bringing all national albinism associations together as one.
Shaun Ross – US fashion model & albinism advocate
Credit: Marie Claire & Getty
Last year the popular US model started a social media campaign #InMySkinIWin in response to a request from a parent of a child with albinism for advice on how to deal with being visibly different. He encouraged others to share photos of themselves to break down preconceived beauty barriers, just as he has done with his mega successful modelling career, and helped celebrate difference in all its forms.
Peter Ash – Canadian founder & CEO, Under the Same Sun
Credit: Under the Same Sun
Peter founded Under the Same Sun, an NGO with the aim of promoting the rights and wellbeing of marginalised people with albinism world-wide. He was spurred into action after hearing about the plight of people with albinism in Tanzania, who are hunted for their body parts. He could not stand by and watch others being attacked so he decided to head out to Tanzania to assist first hand. He is truly an inspiration with his tireless efforts to help keep people with albinism free from violence and discrimination.
Salif Keita – African musician and activist
Credit: Salif Keita
Salif Keita is a popular African musician from Mali who has devoted his life to raising awareness. After being ostracised due to his albinism in his native country, he left Africa and forged a musical career overseas, eventually returning to further his activism. In 2005 he established the Salif Keita Global Foundation dedicated to raising awareness of albinism worldwide and donates most of the proceeds from his music to his foundation.
Kelly Gallagher – British gold medallist, Sochi 2014 Paralympic Games
Credit: Radio Times
Kelly was the first Briton to win a gold medal at a winter paralympic games, winning gold in alpine skiing at Sochi in 2014. She has not allowed her vision impairment to stop her from careening down slopes at speeds of over 100km/h and became an instant hero when she returned home after her win. Kelly is yet more proof that anything is possible and a fantastic role model for all with albinism.
I’m so pleased that my son does have role models he can look up to – and what amazing role models they are too!
Do you know of other notable people with albinism that should make this list?
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