The real face of albinism

Today I’m the proudest mum on the earth. My son gave 10 presentations to his schoolmates talking about his experience as a person with albinism in the lead up to International Albinism Awareness Day on Saturday, June 13.

He proudly wore a crazy hat as part of crazy hat day, a way to get the whole school involved in raising awareness. He decided on wearing this one…

NASA hat collage

I couldn’t be more proud.

To celebrate, here are some photos of my boy over years, showing the real face of albinism. He is beautiful (yes I am biased) but he is also clever, witty and imaginative. He is also strong willed, determined and will not let anything get in his way.

The real face of albinism

He is also excited to have the chance to be interviewed live on radio tomorrow morning. Having witnessed his entertaining sessions today I can only imagine what he will come out with live on air. I’m praying to any and all deities that it all goes well… IAAD Logo

We are lucky to have the chance to spread awareness about the first ever International Albinism Awareness Day which has been declared by the United Nations to shed light on the many and varied human rights violations that plague PWA, particularly in Africa where the condition is not at all understood by the majority of the population.

In the developed world albinism is also poorly understood, perhaps because of the power of popular perception that seems to always cast the PWA in the menacing or evil roles. Remember Silas the murderous albino monk from Dan Brown’s The Da Vinci Code?

DaVinci Code - Silas

image source

It’s always been an uphill battle to try and change popular perception. It’s an unfortunate truth that visible difference will always have the power to intimidate, threaten or challenge people. However, looking different should not result in being treated differently or to the varied forms of discrimination that still follows those with albinism, to this very day.

One step you can take today to increase awareness is to share this post or any of these below:

Albinism 101

Demystifying Albinism: The Power of Popular Perception

Demystifying Albinism: Seeing Red

Demystifying Albinism: Shades of Pale

Demystifying Albinism: Skin Deep

Yes, he is very blonde, isn’t he?

Or you can read and share these pages too:

People with albinism: not ghosts but human beings

Albinism Day

Albinism Fellowship of Australia

World Albinism Alliance

Under the Same Sun

National Organisation for Albinism and Hypopigmentation

Albinism Fellowship UK & Ireland

Together we can raise awareness and improve the safety of those with albinism everywhere x

Spread the positivity!
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15 Responses

  1. linda says:

    Beautiful post, you have every reason to be proud

  2. Trish says:

    What a gorgeous boy he is. I hope it all goes well tomorrow.
    Well done on raising awareness.
    Trish recently posted..Taking Stock – June

    • Kirsty says:

      Thanks Trish. We survived the radio interview! And they also put together an article (together with a very unflattering photo!) that will hopefully increase awareness even further. It feels good to have someone listening – fingers crossed it will lead to a little more awareness x

  3. Hugzilla says:

    Great post and congrats on the ABC article and radio spot as well. Cop that Karl Stefanovic! If we ever get the chance to catch up in person I’d love to pick your brains about all this, as someone who also parents a (kick-ass) child with a visible difference. My son isn’t old enough to realise he is different yet, so we have a journey ahead of us no doubt.
    Hugzilla recently posted..What If Toddlers Had Their Own Version of the Paleo Diet…? Oh Wait. They Do.

  4. Grace says:

    It’s absolutely wonderful and amazing what your son is doing to make a difference! 10 presentations?! Wow!!
    I wish I got to hear the radio interview. Will try and look it up online x
    Grace recently posted..FYBF – An extension of you

  5. What a beautiful boy… Very proud mum you should be… Great parenting is where it starts
    Natalie @ our parallel comnection recently posted..Are you serious? Where am I going wrong?

  6. Kathy says:

    I’m sorry I am just getting around to reading it now and World Albinism Awareness day has passed, but I will share anyway. No wonder you are so proud of your boy and I’m sure he was a radio star as well as one at school. Hope all the awareness raising helps.
    Kathy recently posted..How my daughter taught me to chase my dreams again

  7. You guys are doing a great job!
    Janet aka Middle Aged Mama recently posted..Wearable Souvenirs

  8. Zita says:

    So wonderful Kirsty! You have ver right to be proud! Will you be able to share a link so those of us who missed the TV story can watch it?
    Zita recently posted..24 things I said and thought during my first 24 hours in Nashville

    • Kirsty says:

      I’ve shared the link on Facebook but (being the proud mama that I am!) I’m also planning on linking to all the media here so I can come back in future and relive the magic!!!

  1. May 19, 2018

    […] may see my son on the street and remark on his “very blonde” hair and general paleness. You may even suggest that he may want to get a spray tan and even […]

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