He emailed me that last night, and I looked at it, read it 2 or 3 times, then closed out of email to sit quietly in Mr F's and Mr Bunches' room while Mr F fell asleep. (He won't fall asleep unless Sweetie or I are in the room).
Then I thought about it this morning, and tried to find out where it came from. No luck.
Then I asked Sweetie what she thought about it, and she said I can see what they're trying to say but I don't like it.
In my search for where the shirt came from, I came across a lot of quotes/paraphrases to the effect of "Autism isn't a tragedy, ignorance is."
Which I agree with. At my dad's funeral recently, my aunt (who has never met the boys) asked about their autism. We explained a little of it and she said "So it's like a birth defect then?"
I said "They're not defective."
There are numerous versions and makers of this shirt around on the Internet. One I found has 3900+ reviews, of which 2800+ were "5-star" reviews. Presumably they're not just rating the quality of the shirt material?
I don't like it.
I've decided I don't like it.
It's not just that I am so sick of hearing about $(%&$% bacon. It's not even funny anymore. Bacon just isn't that great so shut up about it you sound like a moron.
More importantly, it makes light of autism. It says that not having bacon is a greater tragedy than autism, which in one sense is true. Autism is not a tragedy any more than any other condition of life is a tragedy. It's just a way of life. There are many things Mr F and Mr Bunches might not get to do in their lives, or might not appreciate the same way we do.
Last night Mr F and I took our nightly ride. He drove along, his fingers trailing out the window in the cool breeze, smiling at me as we held hands. (I hold his hand in my car to keep him from opening the door, which does not child-lock. He is belted, safety-restrained, clipped, and then holds my hand). He didn't seem worried, or upset, or concerned. He was not worried about having gone over his data plan on the phone. He didn't have to think about law firm profits and hiring or firing employees. He didn't have 70 emails in his inbox this morning.
We don't have any idea what he does think, or worry, or laugh about. (Other than when we tickle him.) But he seems happy, and so it can't be a tragedy for him to have the life he has.
But even given that, it seems minimizing, frivolous, mean, to equate not having (#(#%& bacon as being harder to deal with than autism -- and putting it on the same level as ignorance? Ignorance and a lack of bacon are the same?
It seems like anyone who would make this shirt, or who would wear it, just doesn't get it. There was a blogger once who wrote about how she would torment (my word) her daughter by (I think?) chasing her around with a stick, because her daughter was afraid of it. She thought this was funny. I thought it was awful. There is a difference between doing things kids find fun scary, for example -- cold water, or playing hide-and-seek -- and deliberately scaring your children.
There is, similarly, a difference between making the best of a condition that makes life more difficult, and making fun of it, and I think this shirt ends up on the wrong side of that line. I think this shirt is insensitive, and stupid, and boorish. I think people who wear this shirt don't deserve to be around or know my kids, or any kids, frankly, autistic or not.
And it may be a fine line between making the best of things and making fun of things, but why do you even have to approach that line? If you want people to have a positive attitude towards autism, or to combat ignorant ideas about autism, or simply help people who have autism, aren't there like a zillion better ways to do it than to say my not having bacon (JESUS I HATE THAT) is worse than your having autism?
It's not. It's simply not. It's not even funny to pretend it is. Autism isn't a tragedy, but it is hard, for the people who have it, sometimes, for their families, sometimes, and for society in general, sometimes. We have to make special, and elaborate, plans simply to have relatives over for a holiday. Is not having bacon harder than that? For the past year-and-a-half one of us has had to sit with Mr F while he falls asleep -- sometimes as much as 2 or 3 hours -- every single night. Is not having bacon harder than that? Last night, Mr F woke up at 3:30 and I had to take him downstairs and sit with him so that Mr Bunches, at least, could get some sleep. I've been up since 3:30 a.m. Mr F gets frustrated when he can't tell us what he wants or is thinking. Mr Bunches gets tense when too many people are in a room and told a teacher that the way people breathe makes him sometimes feel like crying. We have to have a special safety harness for Mr F on his bus and in cars.
But, no, sure, you're out of f***ing bacon. I see where that would be tough, jerk.
I'm not saying it's all bad, or that parents of kids who don't have special needs don't also have problems. Of course they do. There are so many good times that I couldn't possibly capture them all if I dictated my life into a recorder. Holding Mr F's hand as we drive past farms on our rides. Having Mr Bunches serve me fake pistachio ice cream at the library, and then read through his ABC Dinosaur book again. Watching Mr Bunches make, from memory, by scratch, his pancakes. Having Mr F pull me down to the ground and say tickle tickle so that I'll snuggle with him. Listening to Mr Bunches recite all the planet (and most of the moons) in our solar system while we drive. Swinging Mr F around and around and around in circles at the Little Park On The Mountain.
Those are beautiful moments and many of them wouldn't exist if the boys weren't autistic. It's not a tragedy, to have two beautiful children, even if they are as different from us as unicorns are from a horse.
The tragedy is that people want to make money off of their condition by pretending to sympathize while all the while demonstrating how they just don't get it.
The tragedy is that there are lots of people like that in the world, and too few people like this:
No comments:
Post a Comment