Next Monday, 13 June, is International Albinism Awareness Day (#IAAD).
The theme for this year’s awareness campaign is “celebrate diversity, promote inclusion, protect our rights.”
These are all basic human rights, aren’t they? These could easily be applied within the context of disability and even in the context of gender balance and domestic violence.
Yet here we are, seeking these basic human rights for a very small percentage of the population, targeted simply because of their appearance.
As a parent, all you want is for your children to be healthy and happy. Regardless of where you live or what you believe.
As an albinism parent, I just want my son to be appreciated for all his wonderful gifts, not targeted merely because he looks different. I want him to be given a fair go and included with his peers, not ostracised and excluded because of erroneous perceptions about his condition.
And I desperately want him to be spared from the pain of persecution, bullying, harassment and prejudice.
In this day and age it is beyond comprehension that we still read reports of atrocities committed against people with albinism. Atrocities committed in line with absurd and outdated beliefs. Beliefs that despite our best efforts, are still being spread and perpetuated throughout many parts of the world.
As an albinism parent reading these reports, I realise that this could be the reality for my family too. That I could be in fear of my son’s life, every minute of every day. That if we lived in another part of the world, my family would also be targets.
Imagine having to debate each and every day, whether it’s safe enough to send your kids to school?
Imagine not being able to trust anyone, even close friends and family, in case they turned on you and handed your child over to human traffickers?
Imagine not being able to walk in safety, even to a sporting event, in case you too were the target of abduction, torture and worse?
This is the reality for people living with albinism in various parts of the world.
And as an albinism parent I cannot begin to describe how I feel knowing that if we were in those locations, we too could be in that position.
While I can’t directly impact the day-to-day experience of those living in such fear, I can do my part to speak up, educate my community and advocate for the needs of my son and everyone else with albinism here.
All it takes is one person to change their mind. In turn, they may help someone else change theirs. And so it goes on.
A single meaningful interaction could lead to greater awareness for many. It might seem like we can’t do much from our part of the world, but every little bit helps. Every person we touch with our message is one extra person who knows a little more about albinism, one extra person freed from stereotypes and the power of popular perception.
This is why I write about albinism – to set the record straight and raise awareness in as many as I can. This is why I’m so proud of my son for doing his bit to share the truths of albinism with his fellow students.
We won’t change the world overnight but we are not going to stop trying to create change in our part of the world.
Because you never know just how far the impact of a single interaction can go x
If you want to do your part and find out more albinism and the aims for #IAAD2016, please visit these sites:
UN dedicated site for albinism