When I was a little girl, nobody knew the word Asperger’s. My way of being was called “weird,” “strange,” “slow” and other equally nice things. Today, we are finally getting to understand that not everybody is neurotypical, that the variety of human difference is huge, and that, most importantly, it’s ok.
Everybody on the spectrum is different. There is no single list of characteristics that would encompass all of us. Still, when I think about it, there is a whole range of things that people around me could have done when I was a child to make my existence easier. So if you have a child who might have Asperger’s, these are the things you should consider:
1. First and foremost, it is not the end of the world, a tragedy, or a reason to feel miserable. It isn’t a disease or “a public health crisis”, as some ignoramuses claim. It’s a way of being that is in no way worse or inferior to yours. I believe that in some ways it might actually be better. There is nothing in this condition to prevent your child from being happy. Of course, she will be happy on her own terms and within her own way of understanding happiness.
A choice to engage in dialogue, discourse, or movement-building without making a commitment that any video used will be transcribed has a real cost in terms of cutting progressives out. A commitment to accessibility, combined with intersectional issues that make one short on time, energy, or spoons, has a real cost in terms of cutting progressives out. We can’t do it alone, people!
As a member of the progressive community, I have something I can give to help with that.
Oh, but it’s only at night, right? Surely all well-cared-for people with disabilities are locked up at night. So this would never be a problem. Right?
It seems slightly wild and bubbly-making to be thinking about partying (a little). Karaoke (OMG, yes)?? Costumes?? Yes. I’ve been wondering though about disability specific — OK, wheelchair specific costume. I mean, where is the disability/wheelchair culture that would enable us (cuz it would have to be one of us — don’t want to repeat the disability equivalent of blackface) to joke about ourselves in a Halloweeny kind of way.
Dreams aloud for a second. Well, the costume would have to embody both chair and user. I can certainly see wheel wings, but what would the scary, exaggerated, ironic wheel thing be? A flat just isn’t funny. I often refer to my wheels as my ass — could something be made out of that. Envisions wheels and buttcheeks together. Shakes head. Tries to wipe mind tv. Wheels with spikes, studs, water pistols –OK. Done before. But perhaps a starting point. How to ironize wheels?
Via Wheelie Catholic’s twitter feed: This family needs help buying an expensive device that would allow their daughter to communicate:
“The sad thing is that with a lot of these kids, you can tell the lights are on upstairs, but unfortunately, they almost become a prisoner of their own body,” said Shayna’s mother, Kym.
Spastic quadriplegic cerebral palsy is the most serious form of cerebral palsy. It’s a disease that’s difficult on both those with the disease and their loved ones — but not one without hope, thanks to new technology.
A $15,000 device, the Dynavox Eyemax, would make it possible for Shayna to communicate. An infrared light on the machine’s screen has the ability to “read” her pupils, detecting where and what she is looking at, and then speaking for her.