Going Suessical

I've been blogging about autism for four years now and co-running The Autism Blogs Directory for nearly three years. I've seen the month of April come and go, and people in the autism community really ratchet up the rhetoric, whatever their rhetoric may be (and I win for using that word more times in one day than anyone else!).

I'm going to be the first to admit to bone-weariness. There's no winning here.

There are some autistic advocates jump on anyone who goes blue or goes to an Autism Speaks walk. And gods forbid you raise money for them. Given AS's priorities, this position is absolutely understandable, but most parents and the public are also just as understandably confused at this when they run across it (at which point autistic advocates throw their hands up in frustration, again, understandably). Parents go "huh" and try to figure out what's bad about awareness--and some learn that awareness tied with the whole cure rhetoric really makes autistic individuals feel like crap.

I don't want anyone to feel like crap...so...

Below is a facebook status I wrote this morning after my previous post here.

Here's my thoughts on April-bottom lining it: if a person tries to fence-straddle, yeah, people don't think much of that person for trying to have it both ways. We like decisiveness in people--that way we know who to love and who to hate. I understand why some autistic individuals hate April and blue and puzzle pieces. Their opinions are important and need to be heard. Our society has a lot of growing to do.

I've decided that, as usual, I'm going to do my thing my way and respect other people's rights to do the same. If ever I wanted a reminder that I often don't belong to any particular group, the month of April and the lead in to it remind me of that in spades.

I have, apparently, a very small group of people who accept me as I am and embrace that. I think that's probably the norm, although I have no way of knowing that--when I look at groupthink in action, I wonder.

So since I can't simply embrace one single group's prevailing apparent ideology, I'll keep doing my own thing.

Go blue, go rainbow, go taupe. Go whatever way you want. Ignore the month, if you prefer. It's your facebook page, your blog, your tumbler, your twitter, your life. And for those of you who like to dye your hair, your hair.

I'm not going to try to convince any individual he or she is correct or incorrect. I'm going to respect that person's right to express himself and herself.

You be you. I'll be me, and maybe that way we'll both be free.


kathleen said...

you are absolutely wrong! HAHAHAHAHAHAHAHAHA! only kidding...((()))

Stephanie said...

All the hype, all the extremism, all the "my way or no way" does get very, very tiring.

Yet, today I received an interesting reminder of why I keep trying: I was at a counseling appointment for my son, and the psychologist was recommending a social skills class. Being rather aware of what's available in my community, I asked if it was the one and only one I knew about, and of course it was.

The way the group of services are presented, it's an all or nothing thing (which, luckily isn't true) and one of the services is a "support group." Now, I've tried a few--everybody needs support--but I live in a fairly small, liberal city which has strong political ties to certain autism organizations, and a strong economic interest (i.e. big whopping grants) to research for an autism cure. Needless to say, somewhere between autism and this myth we call "normal," and being empathetic to my children as they are, I'm the odd voice out in any such meeting.

Instead of being supported, I'm put on the defensive.

I explained this. The psychologist's response was, "Sounds like you're exactly the person they need there."

Sharing our unique perspectives, especially when they go against the grain (even, sometimes, each other's grain), is very important.

But it's also oh-so-tiring. We all have limits and we have to respect each other and respect our own limits.