What an amazing experience.
In one hotel were gathered hundreds of people who are typically the only people they know who have the condition of albinism. This conference is the rare time where parents with children who have albinism find it difficult to spot their child in a crowd. No longer does the white hair make them stand out. The children run around with one another and seem to be filled with excitement, especially the very young ones, who perhaps never knew there existed anyone else like them before their first NOAH conference.
This is a safe place, and I cannot ignore the overall feeling of acceptance and love for everyone at the conference. Even for those of us who do not have albinism, we are a welcome part of the community as advocates. Many of us are parents, siblings or significant others. (I was asked multiple times if I had a child with albinism. I must be getting old. I'll blame it on the haircut).
People came from all over the world: Canada, Uganda, Mexico, Australia, Kenya, the UK, Nigeria, Tanzania, Norway, and other places as well. United by a couple of gene mutations that made many of these people look and feel like siblings despite being from opposite ends of the world.
"Albinism takes away race.
Take someone from the US, Africa, Asia, put us all on stage and what color are we?
White.
Albinism is a unifying denominator"
- Peter Ash, CEO & Founder of Under The Same Sun
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| Under The Same Sun is run by people with and without albinism from all over the world |
I attended a panel discussion by teens, who answered questions about their experiences growing up with albinism. The group of about 6 young adults ranged in age from 14-16. As they spoke about the challenges they have had to face and are still facing, I was impressed by their maturity. They approached their condition with a degree of humor and acceptance that I would not expect from someone of their age. They are at a time in their life when it seems like everyone is trying to fit in. We all know that teenagers can be cruel and peer rejection can sometimes permanently lower one's self-esteem. Yet these teenagers spoke assuredly, with their heads held high. Yes, they face teasing and ignorance from their peers and even adults, but they have learned how to cope with it in a way that seems to grant them this maturity that one rarely finds in people of their age.
In the next session I attended, parents of children with albinism discussed how to deal with the outside, ignorant world. In this room I observed a range of emotion which seemed to reflect different levels of understanding and acceptance of their child's condition. Some parents spoke with anger, others with frustration and fatigue. And who could blame them? Every day they have to see the stares that their children receive. They have to answer the ignorant and sometimes even hateful questions and comments of strangers: "Why would you dye your child's hair?", "Why would you adopt a white child as a black woman?". They also bear the burden of every parent: fearing what is said or done to their children when they are not around: "Are you human?!", "Hey Albino!!".
Yet some parents seem to have found an acceptance and pride in their child's condition. Yes their child has albinism, and that is nothing to run away from. They will proudly explain their son or daughter's condition to questioning strangers - because that's just one less ignorant person left in the world. And many of these parents are starting to see that rub off on their children. As their child has grown up and watched their parents, they too take a pride and acceptance of their condition, which is very much what I saw in the teen panel.
What a wonderful world to be welcomed into. I can't help but hope that we might be able to unite all people with albinism around the world, so that everyone can know that they are not alone. But the even greater dream that all of us at that conference are working towards, is a world where one doesn't need to be surrounded by others who share a similar condition to feel like they belong.
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