Tales of a Bohemian Crip

very insecure about my lack of Life Experience(TM) although I know there are not a lot of modern writers that actually go the Hemingway/Henry Miller route. But sometimes I feel that any reader I have can see How much time I spend watching TV in my sweatpants.(I’m very ashamed of being so Special that I was not left alone in my house till I was fifteen, for instance, despite our movement’s thing about Pride
Treating my computer like a premature child with a cough is not helping either.Mr. Gates, it’s swell that you want to pay a more fair tax rate, but right now, I’d prefer it if you’d work on a way to get more usage from your PCS…maybe eight or ten years instead of five. Thanks.) Computers need a Volkswagen…something cute, but also tough enough just to go and go. I can’t focus because all I do is wonder if this is the Last Time. I suppose it’s lucky I never went in for that volunteer training at the hospice, after all. I’m guessing I would be really bad at it.

but talking to other disabled people kind of depresses me. Especially in big groups. Maybe all LinkedIn discussions are that depressing, though.
But if talking about and mindfucking our employment problems solved anything, especially that old chestnut “It’s the *Attitudes*(posted as if delivered by Moses on Mount Sinai or something instead of being regurgitated everywhere since, like, 1984, solved anything we’d be at 3% and AB World would be asking us for tips.)
The sad part is that the “Attitudes” bit is generally a huge applause line, generally with over-enthusiastic women with self-help quote signatures whose jobs generally sound kind of made up. Like even after they tell you what they do, you can’t really picture their days.
Sometimes I think I would be happier if I could have fallen in and become one of them…they think they are having a good time, even if they’re not.Why do I have to take things apart so much instead of being the sweetheart of the Crip Pride parade and e-mailing everyone I know when Helen Keller is the American Experience. Why do I think it’s all so…boring. The educated parent who’s thrown the full force of that under-used MBA behind making sure nobody calls Stacy a SPED on the playground. I’m sure it’s not boring to Stacy(although I hope she doesn’t end up feeling like a guilty bad investment like me, because that really sucks worse.) The teacher who bows and scrapes to show people damaged by the public-school system(or points worse) that she’s one of the Good Ones. I could script the whole discussion without reading it.

There is really nobody like me out there.
I wish that meant that I was peerlessly awesome, but I don’t really think so. I mean, I know other writers, and a few other disabled people(seems like less of those every year since I found I prefer working on campaigns to straight-up crip advocacy. On campaigns. you might get to win…in advocacy, in my lifetime at least, you get to not-lose.) Many other crips don’t trust me because I was educated by The Man and hoped to have a journalism job someday. But that was long-enough ago and with enough of an asterisk that I can’t really talk shop with media professionals and am too old to act the part of the eager intern(unless I live to be 150, then I am right on-track.) But I have kept up enough to know that the people who think a print-journalism degree is a sell-out move are kind of insane, and I would say as much if it didn’t seem like invoking our shared history of forced hospitalization or something. Sometimes, everything hurts. Looking at the alumni magazine and seeing what the real graduates got to do. Sending a wedding gift to a cousin I barely know and thinking she was, like, in high school when I graduated college so off the hook for gifting me then, and I doubt there will be an occasion for me to get an outpouring from any of them, ever–although the strict truth is that I don’t come from *outpouring* people and everyone on that whole side has blown me off since I was twelve. Still, kind of a feeling of Fail. And nobody knows what this is all like.

I am not ten.
This would seem to be self-explanatory, based on the fact that I sign my own paperwork instead of my mom signing it, but apparently it is not because you practically want to introduce me to “girls my own age” I’m just not that excited about wandering the mall with some eager, chirping, rehab graduate. I’m sure she would be scrubbed, Christian, and embarrassed in R-rated movies. Dealing with people like that is more of a job than a blessing at this point. I don’t really shop any more anyway, but if I got the chance I probably would. I want things like my friends have, not just unconnected, mindless diversion. This is my life, not summer vacation.
I’m behind for my age, not some “Make-A-Wish” Girl
I think people who worry about my level of “stimulation” have seen The Miracle Worker too often and imagine themselves selflessly guiding me out to the water pump intoning “wa-ter” till I get it. I thought it was kind of dumb when I was a young SPED and they made us stick our hands in, like, birdseed, shaving cream, and potting soil to teach us that things are different. I know that now, but I never played Beer Pong.
It’s hard to go out if you’re me
Transportation is a chronic issue, and most places, ADA or not, are not really expecting me to show up. People aren’t that comfortable with me, or they over-compensate trying to be crip-positive.I’m tired of explaining what happened, tired of people being shocked that I don’t talk like a poster child on TV. I’m tired of getting stranded. Only old people are out when I can be.

My mother pried the door of my DVD player open with her fingernail. I suppose unplugging is my halfassed solution for some other technical glitch. I have got to be more careful with that thing, though.

Kicking myself again today.(Of course, if I were coordinated enough to do that, maybe I wouldn’t need to so much.) because I put a DVD in the player wrong and the new one has a chip in it or something so that it “knows” I’m loading a movie and not to open the little door. But of course, not being in the tray *precisely* means the disc won’t play either…it’s sort of electronic “Who’s On First?”
That’s the man’s name.
That’s whose name?!
Exactly.
I wasn’t very alert when I tried to queue up “ThirtySomething” this morning,,,did I mention this is the second time I’ve done this? I think if I unplug the machine and press “Open” again, it will sort of reboot it.(that’s what happened last time…(tech people who may be reading this…I know probably reboot is not right and that machines don’t get confused, but in both cases, that is what they remind me of, so I’m writing that.) Upside, I’m fairly sure nothing’s *broken*
Downside, I’m a fumble-fingered crippled moron. Damn it.
Bill Gates thinks electronic houses are an awesome future advance because he has a staff that is(probably) terrified of him.
The chip thing is sort of awesome if you stop a flick in the middle, but right now I’m so not a fan.Right now, preferring mindless machines I don’t have to talk down

-mini-resolution after I did some organizing–Don’t make so many hard copies…I found canvass lists going back to ‘08. I think sometimes I keep things around because it makes me seem as though I have a serious, busy life like other Americans but when I need to find something, it’s too hard to sort through pages of old phone numbers and my essay on “House MD” from 2006. It was a good essay, but I’m not sure why I made that extra copy…Lou Grant is not looking for it. It is probably more tragic. I probably thought I would send it to my dad or something, but he pissed me off before I could do it. Now I wouldn’t bother, even if I still considered it my best work.(The magazine liked it; the fangirls on the internet were significantly more harsh about my lack of attention to detail…at the time, that hurt so much, I was tempted to have Kaleidoscope pull it–now that is par for the course.)
Even though I still watch House on occasion, it is hard to imagine writing eight pages about it today. I think it’s played, although Laurie’s performance remains excellent.
couldn’t bring myself to throw out my resume or list of Berkeley numbers, although both probably need refreshing, if the unlikely happens.
Moved bulky, and essentially meaningless, state paperwork to its own drawer…just in case we need proof we’ve been having meetings, etc…their record-keeping can be exceptionally lousy, but one stupid comment I might make might have a shot at living forever. I don’t know why there has to be so much personal info on those things if people don’t really read them, and, yet again, there will be two more people who weren’t at the last meeting at the next one. In one way, it will seem like they know everything about me, and I will wonder at the end if the last woman’s name was Alicia or Felicia. That doesn’t seem like being on the same team to me. I have, like, ten of those, with the same goals on them, political action, and getting published. Which I think seem slow to them(in a different way than they do to me, obvs) and they have little to offer. I hate when we have to pretend this process is super-important(although if we still need the attendant funding it is, in one sense) but there is a certain kind of yokel bureaucrat that thinks more pages/signatures means it matters more and that’s who I cursed when ratholing this junk. Because it is just sitting in a file and nobody really cares about my Accomplishments in the last three months.
Although I did find numerous Lost Things while doing it so that’s worth something.

Not really as over my little “adventure” last week as I’d hoped(emotionally–the physical healing surpasses expectations) I found myself feeling kind of small and shaky this morning, around the time it happened. Why did I lie about that, while I’m revisiting painful thoughts? Does an extra half-an-hour out of hell(which I spent cussing out the person that loves me ithe most in the world in absentia, ftr) make anything less hellish? My guess is no, but I think I’ll stick to the lie anyway…it was important to shape that story–put it in the past. But I sit in there and all the stuff I didn’t feel while enduring just flooded me…argh.
I was hoping to be truly tough for once.
Also. found an ancient e-mail(5+ years) I sent to one of my dearest friends and all the pain that’s in it could be evergreen…I have made *no* progress at all. Love when that happens.

I learned something new about being in a wheelchair, after more than thirty years.
No, not about compassion, or body image– I learned that if I bend over too far, I can tip the whole damn thing over on myself. So. there went yesterday. I will carry a phone at all times from now on. No, I have no idea how far too far is, because I’ve done things like that my whole life to no ill-effects. That’s a little scary..
I was not injured though my muscles did get an undesired workout. Matrons in Scottsdale would probably pay to take it as a meditation seminar, though.

Absolutely not feeling great about myself today. I mean, my dog-faced cousins are getting married before me, and I’m still feeling all invisible. Writing helped a little(about three pages) but not as much as you might expect. Even though it’s going pretty well, it sometimes feels like part of the problem. Because Little Erika, eyes shining from those Christmas programs that age would teach her to find endless, did not sit in that tiny blue wheelchair in that dumb silky party dress, that for one year felt like being a princess, and lisp through the gap in her front teeth “Dear santa, might I grow up to be a sexless content monkey?” Even Tiny Tim wouldn’t do that, and he was a self-hating little twirp.
And sometimes it seems like everyone is better at being disabled than me, too. They ski and they go canoeing and they make insightful documentaries about the crip experience. One woman I know on Facebook has a romantic-advice column and kind of makes paralysis sound like the funnest accessory ever.
I…occasionally *watch* insightful documentaries about the crip experience and try to convince my friends that Sheldon from “Big Bang” has Asperger’s Syndrome.