Last Saturday was Rare Disease Day 2015, which I guess most people don't know about unless, like me, they have a child that fits the category and a Facebook feed full of people whose children fit the category. Sometimes I miss the days before we knew about Rare Disease Day, World Sight Day, Autism Awareness Month, Jeans for Genes Day, and so many other days... It used to be that Ron came back from school with a note saying we are having a red/blue/green t-shirt day for this or that cause. Please donate a pound. And all we cared about was how are we supposed to find a green t-shirt in the next 24 hours. Ron is a redhead - he doesn't look good in green.
Nowadays, I get emails and messages and requests to write about each and every one of these days, nowadays I don't understand why they didn't collect money in our school here for Rare Disease Day (or any day for that matter), nowadays I don't know how it is possible to not know about these days and their meaning for other people.
Nowadays I measure everyone and everything with relation to how they treat people, and mainly children with special needs.
And I do, I have a hard time with labelling albinism as a disease, a condition or a disability. It doesn't make it any less true. I have a hard time getting the image of a sick child, or the meaning of a "diseased" child out of my head. But this is the point of Rare Disease Day - to make us understand that what we think of as a disease is not the only correct image.
It is about reminding us of the fact that medicine, like everything else, is a business. The Rare Diseases out there, or the "Orphan diseases" are the ones that gets dumped to the end of the line - there aren't enough patients to merit spending time and money and resources looking for a cure. But those "not enough patients" are people - dads, mums, children. It is so easy to look at numbers and statistics and say hey it's just 1:200,000 people... It is a very cold comfort for the people who has the condition, to their families, to the people who have to say once and again - no, there will be no cure for that, no one is even looking. Trust me, I say it often enough.
Blind Children UK that new research shows that almost half the parents they asked would not invite a child with sight impairment or blindness to a party or a play-date. How many of these people ever saw a child with sight impairment? How many people do you know who has albinism? We have doctors treating Yon who never saw a person with albinism. All everyone knows is the mental image we have from the movies, from the books (like The De Vinci Code or The Heat), where to call what they depict incorrect will be an insult to the word. We are afraid of what we don't know, and the mental image we create of that thing. For the same reason watching the movie after reading the book is always a let-down (and not just because usually the plot in the movie sucks) - the onscreen image is always different than the one we created in our mind. The same is true for the real-life image. This is why we need days like Rare Disease Day, this is why we need inclusion, this is why we need to know.
It would be so much easier for me to hide Yon's differences, to have him labeled a lot of other things, but not disabled, or blind, or Autistic. But I won't.
Because our children, my child, are not diseased. They shouldn't be hidden and banished to a dark corner or swept under the rug. They shouldn't be a dirty little secret to be hidden from the world. They should be celebrated and congratulated and embraced.
Because it is our children - the sick, the different, the Special - who makes society into humanity.