Between post office and cafe

los gatos town park
Originally uploaded by Liz.

I do love this photo of myself. I’m lying on a park bench in the tiny town square of downtown los gatos outside the post office. My hair was nifty looking. My wheelchair is not in the photo but you can see i am wearing the gloves so it was not far off. If you are already on welfare and only have about 3 hours of sitting-up time per day and have your punk rock tendencies, then … what the hell people, shave your head and pierce the hell out of your nose. Nose rings in the center are good signifiers to tell men to stay away.

Going to the cafe and post office was a huge deal for me. It hurt to sit up, just like now. But it was the highlight of my day to go and be around people. Sometimes I would beat the old guys playing chess in the cafe. I would write in my notebook and draw comics. also i had that old duodock test version and was trying to write a game in TADS. it never got very far. it was a big thrill to get my riot grrl zine mail and zine exchanges in the post office box. I knew then why old people sometimes seem so desperate and needy. The 2 minute conversation with the post office clerk was sometimes the only human contact I had. And with the woman who pumped my gas at the station at the exit just above the los gatos exit on the other side of town. She was sort of butchy and was the only woman working there, and would tell me what that was like as she pumped my gas. With a disabled placard, you can get service at a gas station for the same price as self-service. So it was important to me to know the places that had full service. I did not want to blow my limited resources on getting out and dealing with a gas pump that would be way over my head.

Old people were also nice to talk with if I ran into any. In the grocery store as I rode around in the little motorized shopping cart I would strike up conversations. Or if you are slowly going up the stairs clutching a handrail then you might have a friendly nod with another cripple or old person and that exchange meant more to me than many of the real friendships I had because I knew that other person really understood what I was going through.

Once in the hardware store next to this little town square a man came up to me and with false joviality and extreme skepticism said “You can’t be in a wheelchair! You look too healthy to be in a wheelchair!” For once I instantly responded with a snappy comeback that was something like, “Oh? And you look too grown up not to have any manners. How funny.” People made comments like that all the time, sometimes well-meaning, and sometimes overtly hostile. Was I faking it? Did I like using a wheelchair because it got me attention? I just moved my legs, how come? Why was I in a chair, if I wasn’t paralyzed?

My least favorite question was “Are you going to die?” Also “Can you have sex?” to which the obvious and really fun answer is “Would you like to find out?” with an evil leer.
My other least favorite thing was when people would chastise their children for curiosity. So a 4 year old staring in wonder would get a yank and a lecture about being polite. Or a kid asking me why i have a wheelchair would get an even worse lecture. They were just as likely to ask why i had earrings in my nose. Kids get to ask, and I will always give them a reasonable explanation at what I estimate is their level of understanding. “My back got hurt, so I can walk a little but not very far, and it will probably get better, but I don’t know if it will or not.” That is short and to the point.
I give the same explanations to grownups when I’m not mean and snappy. What I really hate is when people I don’t much know or have reason to like want to get all up in my business. They are ghoulish… and they are clearly processing their own fears. It is like homophobia, where a person sees an actual gay person, and has to face on some level that there is nothing rationally stopping them from being gay. Disability that is visible forces people to think and consider “that could be me; there’s nothing that says it won’t be me; I could get hit by a bus tomorrow or get some kind of illlness.” While that is true it is not my job to walk them through their freakout as they consider that concept and want to know what it is like day to day to be disabled. They can go read up on it. Or, worse, when people want my detailed medical history and prognosis. I mean some of that is okay but I am about THIS close to routinely ending such conversations with a pointed, “So, how’s your health and what are your deepest hopes and fears? Would you like to tell me a detailed history of something that is painful and difficult for YOU?”
I might ask after a while what a person’s deal is… and then change the subject. I can go home later and look up what Charcot-Marie-Tooth Syndrome is, you know? I don’t have to bore them by asking all about it. It’s probably a bit rude of me to ask at all though.
The other thing I fucking loathe is how people touch me when I’m in a chair. If I were sitting in an office chair, they would not. But like being pregnant, visible disability seems to signal to people that it’s open season on my physical boundaries. I have not figured out why this is. It is a power thing, and it’s also similar to how people interact with children and how men sometimes interact with women.
Actual disabled people who are more studly than me can look each other over and make pointed diagnoses and comments about which vertebrae is scrod. Experienced disabled people would often look me up and down and go, “Car accident?” assuming that I was young, I had a fancy expensive chair, therefore I must be a car accident with my insurance paying for it.

I was in a car accident in 1988 and I often trace problems back to that. I landed on my right hip, shoulder, and head. I had a concussion and neck and rotator cuff problems and then surgery. The low back problems did not start till a bit later though.
It was helpful to read John Hockenberry’s book and also some cheesy book by a woman with severe rheumatoid arthritis and a wild sense of humor.

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