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

Gareth Ward MP

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

Dr Shari Parker

Credit: ABC

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

Shaun Ross - model with albinism

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

Peter Ash - 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

Salif Keita - 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

Kelly Gallagher

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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18 Responses

  1. Lydia C. Lee says:

    Interesting – I hadn’t thought about it. But I will and may return!

  2. I don’t know anyone at all with albinism but I have learned a great deal about it- from you!

    • Kirsty says:

      I’m the sort of person who has to learn all about something and then share it for the knowledge to sink in. Let’s hope I’m feeding you the right type of information Amy!!!

  3. Wow, it’s very rare isn’t it? What a great post too. The women have the most stunning hair in those images – quite envious!

    • Kirsty says:

      I often say to my boy that women would love to have his hair colour without having to resort to the peroxide bottle!

  4. I don’t think I’ve met anyone with albinism! I didn’t realise how rare it was! What a great bunch of people you’ve listed here – great role models for your son. Your upcoming local albinism awareness day sounds like it is going to be fabulous Kirsty!

    • Kirsty says:

      I hope it’s going to go well Min – I really want to create a community from it so my boy and all other people with albinism in our area can be supported and have others to turn to.

  5. Vanessa says:

    I knew it was rare but not the level of rareness. Given that, you’ve found a great selection of role models here.
    Vanessa recently posted..I Have The NOPES

    • Kirsty says:

      Those are only approximate numbers but yes it is very rare. We are lucky here in Australia to have people who have been able to develop a positive albinism profile in their chosen profession. It makes me feel much better as a parent knowing that anything is possible for my boy.

  6. Wow, great selection! I wouldn’t have realised …
    So great to have role models who achieve great things beyond their challenges.

    • Kirsty says:

      Exactly! I truly do believe that anything is possible and I hope my son can come to see this as well as he grows.

  7. Deborah says:

    Great post. I actually recently read a book (The Dry by Jane Harper – an Aussie book) where the lead character (a federal police officer) ‘had’ albinism.

    Before that I most recall noticing those with it when I lived in Africa in the 1990s.
    Deborah recently posted..How am I doing?

    • Kirsty says:

      The prevalence of albinism in Africa is much higher due to intermarriage and other cultural differences. But sadly that’s where they most need support. It would be amazing to one day have a world where people did not live in fear of their lives simply because they looked different…

  8. Grace says:

    They’re all wonderful role models for your son, Kirsty! I actually hadn’t heard or read about any of these people so I’m so glad I read your post. It’s terrible that those atrocities are still happening in Tanzania. What amazing work Peter Ash is doing. In fact, all these guys are amazing.

    • Kirsty says:

      They are all amazing – I’m so happy that he has real worthy role models to look up to in the albinism community.

  1. July 19, 2016

    […] Real Life Albinism Role Models […]

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    […] Demystifying Albinism: Real Life Role Models […]

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