So here is the latest from Facebook.
My wish for 2010 is that people will understand that children with disabilities DO NOT have a disease; children with disabilities are NOT looking for a cure but ACCEPTANCE…. 93% of people won’t copy and paste this, WILL YOU be one of the 7% that does?…. and make this your status for at least an hour!!!
I can’t really put into words why this post makes me uncomfortable. I understand the meaning behind it, and it’s a good one, but… I dunno. Maybe it’s the wording. Maybe I’ve just had too many Mormons – many of whom didn’t even KNOW anyone with special needs or who was mentally retarded or who was brain damaged never mind actually LIVED with anyone who was, or LOVED someone who was – tell me that special needs kids are “blessed” and really valiant because they chose to be born that way in the pre-life in heaven and had huge rewards for their self sacrifice planned out for them when the world ended and they all went back to the heaven blah blah blah.
Yes, acceptance is really important, it’s their right. It’s their family’s right. I remember my brother getting beat up for being weird. I remember him being shunted off to the side in his classrooms because there weren’t any provisions for special needs kids in our grade school, I remember him spending a whole year with his goddamn head down on his desk being IGNORED because the teacher didn’t know how to deal with him. I remember how hard my mum had to fight to get ANYTHING for him down in Quebec, and how much of a difference it was when we came to the Yukon and they had whole CLASSROOMS set aside for kids like him, in EVERY SINGLE SCHOOL with special teachers and aids and funding and everything. AMAZING STUFF PEOPLE. LIFE CHANGING STUFF. I’m not saying the sentiment is wrong – I know what it’s like when kids with special needs are treated as burdens and problems to be ignored and swept under the carpet.
But a cure? Hey, call me absolutely fucking nuts but I wouldn’t exactly say I’d turn down a cure for my brother and all the kids I’ve met who can’t read, can’t work, can’t do math, or have the emotional lives of 6 year olds for the rest of their lives. I’m pretty sure he wouldn’t, either.
I understand the need for awareness and acceptance. I understand that that is what gets kids the special classes, the teachers, the knowledge to combat their illnesses (because HEY PEOPLE! some mental retardation IS caused by disease. Some brain damage IS caused by virus.) and thank god that my brother was born in Canada where he didn’t die because of the encephalitis, the resulting health issues, and thank god for health care because I can’t even imagine what would have happened to my parents in the States if Daniel had been in the hospital that long, if they’d needed to buy all the drugs he needed out right. The debt would have killed us. Thank god we moved to the Yukon Territory where schools are run differently, where funding is used differently. My brother couldn’t read or write AT ALL when he first got up there, and now he has the ability to read and write at a Grade 1 level. Thank god he had parents who let him live instead of shunting him off to a nursing home or keeping him inside where it’s safe all his life. All of this, all of these attitudes are due to decent people treating kids with special needs and disabilities with respect and consideration and love.
I think that ultimately, the problem here is that this was really shittily worded. There might not be a cure but you can bet your ass that if there were there’d be people lining up to help their kids just like there are people lining up for all the classes and workshops available today. Fucking facebook memes. You know what? They are well meant – but I think people need to think twice about what they are writing, and what they are posting. I’m talking with my mother right now – and she’s one of the people who put that in their header. Another person who posted it was Barb – my mother’s friend of over 30 years who I love dearly – she’s an Aunt to me, and I love her because she IS family to us. She knows Dan, she loves him and she posted that with great intentions to. My mother pretty insightfully said that this is going to mean different things to different people, this whole meme du jour. She’s right, she’s absolutely right. But I don’t like it, I’m not posting it, and now you’ve got my reason why.