This is one of those rare occasions where I’m going to be talking about something other than hockey. If you’re interested, stay a while.
I don’t know how big this story is outside of Southern Ontario, but I’m sure many of you have heard of the nasty letter the mother of an autistic child received recently.
If you don’t want to read the whole thing, basically what happened is an anonymous writer gave a letter to the family of an autistic boy, saying he makes too much noise in the neighbourhood, and should probably just be euthanized. The letter’s author also suggested that the family should “take whatever non-retarded body parts [the boy] possesses” and donate them to science. How lovely.
If you don’t already know this about me, my sister Rachel has autism, among some other mental and physical issues. Obviously, when I read something like this, it makes me a bit upset.
That’s not what I want to focus on today.
Since this story broke, I have read an outpouring of emotions from the people who have read it. People are very upset. Outraged. Sickened. I’ve read that people find the words in the letter to be repulsive, disgusting, and reprehensible.
Of course that letter makes you upset. If it didn’t, you’d be an asshole.
Can I just make an observation though?
Upsetting stories involving autism, usually children with autism, pop up from time to time. Usually, the stories involve some form of mental or physical abuse. The story happens, people read it, people get upset, and that’s it. That seems to be the circle of life for these things.
Here’s what I would like people to consider doing instead of, or in addition to being upset: Learn.
I don’t mention my sister much in public. At least I try not to. It isn’t because I’m embarrassed or ashamed by her, either. I love her. I’m very proud of her. I just find that usually when I bring her up, an uncomfortable fogs sets in the room. Part of the reason for this, I think, is because people don’t know much or anything about autism or other “special needs.” Maybe it’s because they don’t want to offend me, or maybe it’s because they’re scared of asking me something ignorant. They’re worried they will sound stupid. Relax. I don’t bite.
Here’s a funny story. One late afternoon a few years ago, I was floating in the water at my buddy’s cottage with some friends. I was talking to one of my friends about how tired I was. I was 21 or 22 at the time, and I was working a lot of nights. I was usually getting to bed around 2am or 3am, but I was being woken up by my sister almost every morning, because she would be singing Barney the Dinosaur songs at the top of her lungs from downstairs at like 7am.
Another friend of mine only started paying attention to the story at the Barney part.
“Who is this?” he asked.
“Oh. How old is she?” And then he jokingly added, “18?!?!”
I go “Yeah. Her birthday was last week.”
We both laughed, but then I said, “Seriously though, she has autism.”
You should have seen the look on this poor guy’s face. The poor bastard. Oh, he turned 100 shades of white. He then proceeded to apologize to me for the next hour and a half, I think. I laughed the whole time. It was cool! I wasn’t mad! How could I be mad at him? He had no idea my sister was autistic. He wasn’t trying to be mean. He’s not a bad guy! He was just trying to make me laugh! But I think the lack of knowledge around autism in society as a whole made this poor guy feel like he just accidentally said a racist joke or a sexist joke.
How come I never told a close friend of mine that my sister has autism? I don’t know. It never came up, I guess. Imagine how weird it would be if I introduced myself to everybody by saying “Hi, my name is Steve and my sister has autism.” You wouldn’t introduce yourself by saying “Hey, I’m Jimmy, and my sister Sally loves playing Bioshock,” would you?
I am offering this same advice to myself, by the way. I thought I was educated on autism enough. After all, I’ve lived with my sister for 22 years, and I’ve been around other autistic children for my entire life. I must know it all, right? But I’ll never forget the first time somebody I was talking to just said “I have autism” in the middle of a regular, everyday conversation.
I don’t get to have regular conversations with my sister. Her speech skills are not fully developed. She speaks in kind of a strange, broken english that only myself, my parents, and a few other people in her life can understand. To be honest, I don’t even think she understands that she is different, so needless to say, it was a bit jarring to have someone just come out and say they were autistic.
The truth is, there is a massive spectrum of autism, ranging from a low-functioning degree that makes it extremely difficult to learn or communicate, to high-functioning autism that you may not even notice in a person. I did not know that a few years ago, but I took the time to learn.
Then there is the issue of care.
Finding care for an autistic child can be very difficult. Finding care for an autistic adult is an absolute nightmare.
Booking daycare time for my sister as a child was a challenge for my parents. They had to book weekends for her months and months in advance, because the limited spots available in my sister’s daycare were often filled extremely quickly. My parents managed, though. I could watch my sister for a few hours on a weekend, of course. I was always there as a babysitting option once I turned 14, and my sister was allowed to stay in her special high school class until she was 21.
Ever since Rachel turned 21 however, it has been a much greater struggle. My family was forced to find my sister care during the week while they worked. You would not believe how expensive that care is, and you would not believe how difficult it is to get funding for it. We’re talking thousands upon thousands of dollars. One option that was considered was that my mom would just quit her job to stay at home with my sister because care was so expensive it almost wasn’t even worth it. Some mothers do that with their new-borns or toddlers. My sister is in her 20′s. This would basically glue my mother to the house, though. That’s not good for anybody’s health.
What the author of that nasty letter might ask of my sister is “What’s the point?” Why not just euthanize a retarded kid, as she so eloquently put it, and be done with them?
Because fuck you, that’s why.
Does my sister drive me crazy sometimes? Yes.
Does she make me mad sometimes? Yes.
Does she make me cry sometimes? Yes.
Does she annoyingly wake me up when I am in desperate need of sleep? Yes.
Does she bug me when I’m trying to watch something, or read something, or do something? Yes.
These are not things that make her disabled. These are things that make her a human being. These are things that make her my sister, and make me her brother.
Some people constantly fight with their siblings. Well I don’t. In fact, I don’t get to. That isn’t an option. I don’t get that luxury, and I gotta tell you, I’m not all that bummed about it.
Some people don’t even talk to their siblings. Well I talk to mine, and she talks to me. In fact, we still get to sing Animaniacs songs together.
Some people don’t even love their siblings. Well I love mine, and I know she loves me, too.
All thing’s considered, I have a pretty awesome sister, and we have a much better relationship than many siblings do.
Likewise, my sister and I have awesome, hard-working, caring parents. I feel bad for the author of that letter because she says she has children. If she’s telling the truth, her kids are being raised by a monster. She’s going to poison them with her hateful bullshit. The poor kids. They’re kids! That’s what they’re going to be taught? What chance do they have?
The whole point of this long and winding blog was to advocate knowledge. Not awareness: Knowledge. Everyone knows that people with autism exist, but very few understand anything about people with autism. Just because you know the moon exists doesn’t make you an astronaut.
I want to leave you with some resources.
First, I want to leave you with the fascinating Carly Fleischmann. For a long time, they thought Carly, an autistic girl, could not speak. One day, when Carly was in pain, she shocked her family by typing “Help” and “Hurt” into a laptop. They discovered that Carly was fully cognitive of her surroundings, and was basically trapped inside her own body. She now has her own blog, which she runs and writes for herself. It is an excellent resource for learning about autism. There is also a great book called Carly’s Voice, detailing Carly’s amazing story. It’s a great read, and if reading isn’t your thing (I assume it is, I mean this blog is 1,700 words long), you can listen to the audiobook version instead.
Lastly, here are links to donate to both Community Living Toronto, and Community Living Ontario. These organizations have greatly helped out my family and thousands of families in my region. They help families of children with disabilities. I recently won $2,000 for CL Toronto through the generosity of Microsoft, and I’m very proud of that, but that is just a drop in the bucket. If you are from outside of Ontario and want to contribute in some way, I highly suggest you look up some charities in your area, too.
If all that nasty letter made you is mad, then the lady who wrote it has won. If you take this opportunity to educate yourself instead, we’ve won.