Journey to NOAH CON 2016 :: Meeting Successful Adults with Albinism

Meeting adults with albinism was a treat. I found myself surrounded by app developers, Olympic athletes, kindergarten teachers, medical professionals, lawyers, world travellers, beautician, linguists... there seemed no boundary unexplored. This very fact is what made it so impact full. 

There have been so many things in my years that I have been ruled out of or have ruled myself out of because I was of the opinion that it was an impossibility with a disability.

Knowing that you are capable is nothing compared to experiencing representation first hand. Being in a room full of hundreds of people who have traversed roads so very different from my own...who have conjured and defeated ideas that seem at first glance impossible, served as another reminder that the world is bigger and greater than the boundaries of our comfort zone.

I want to make something clear because this is something said to me constantly when I explain my worry about not being able to accomplish a task:

every person with albinism can have a different visual acuity than that one person you met with albinism that one time who did that one thing.  

Shocking I know, that we can have the same condition and not be exactly the same. What a surprise that we can have a similar skin complexion, eyes and hair colour and not be exactly alike by skill level. Hey, does this sound familiar in anyway, the judgement of a whole group of people as according to how they look? The expectation that they should fall into a particular bracket not made by themselves?

You may meet a person with albinism who has sight that is corrected to 20/20 vision with glasses as well as you may meet a person who is legally blind and who corrective lenses do not help. You may meet someone who has vision acute enough to get a license as well as you may meet someone who needs a cane, Braille or a guide dog to function day to day. 

All people with albinism do not have the same needs and not only is it prejudice of you to assume so it's down right rude. I am an individual, treat me as such. Get to know me, ask questions and do not assume to understand the way I see the world through the eyes I have been given.

I don't just walk up to every person in a wheel chair and assume they have no functionality beneath the waist because that would be rude. I would accept that this person has a right to their privacy, I would get to know them and find out if they are comfortable answering my questions.

Don't just decide how to help a person, ask how you can help them. Do not hold them to the standard of that one success of that one person you met that time. Hold them to their own capability.

I know that it is tempting to do otherwise, as human beings I think we find a strange satisfaction in categorising things, placing things into boxes and telling ourselves that the ability to do so is a show of understanding whatever we have placed in there. This is not always the case that works, especially when you are dealing with human beings with an ever evolving conciousness, ever shaped by on going experiences.

Meeting adults with albinism was a breath of fresh air because different means talented in unique ways as much as it means bonded by rarity. It means moving from an isolated life style to realising that you are a part of a community of rarity that aspires to the same sense of normality as anyone else would.

Doesn't every human being deserve that respect? 

Yes, the answer is yes.

Peace. Love. Respect.

Thank you to everyone who had a hand is sponsoring my trip! All the people whose name I don't know, Kallalou Jewellery, the office of the Prime Minister and anyone else i have invulnerability not named by name. I appreciate you s very much!