So I've been disabled for a long time. I spent years with an invisible disability (something was wrong but it wasn't obvious) and used a can a lot so something would show, so i could get that seat on the bus. Things got worse, I got DHAS Syndrome (see early blog posts. This is Langfordian* for "Doctor Hasn't A Clue" as I have an unknown, unlabeled bone disease that caused fractures. This meant walking got real hard. I spent years using a motorized three-wheel scooter (which I still use) and now I use a power wheelchair. My chair, "Pearl" is a Quantum 610 with the spiffy recline back feature since one of my ongoing issues is protrusio acetabuli (aren't we learning new stuff today!) which means that my hip sockets are funky and weird. Sitting upright? Not a groovy thing. I have rotator cuff problems (probably from using crutches, as i didn't have a really great pitching career).
I spent years in the disability field doing everything from job development, and sitting on boards and commissions representing the disabled community. At one time. I was part of a cross-country caravan of disabled and able-bodied people called the "Disabled American Freedom Rally". I'm in it for life. We didn't know this - I was doing sort of okay until that day back in the early 90s when something went dreadfully wrong and the doctor wanted to know when I had broken my hip.

Life changed, of course. It had to. A lot of the stuff I knew, I advised people about, I know had to take advantage of. Wheelchair seating at the arena? Yeah, I need that. ADA room at the hotel? It's no longer a theory, it's a necessity. Getting cranky when a community meeting is held up a flight of stairs, or when the "improvement" to the local Boys & Girls Club takes away any obvious wheelchair access? Yeah, that's me, bitching to the organizers.

Every trip is complicated. You folks who can just go on line and get your airplane seat and hotel room dealt with by pushing buttons and going poof? I envy you. Every shuttle trip you can just book on line? I'm jealous. In June, despite years of using the same service and booking a wheelchair van, we got a phone call at 5:15 AM complaining that we had not told them we needed the lift-equipped van, despite our getting a confirmation phone call the day before. I had a fifteen minute phone conversation with the service about this and there is no box to check for "wheelchair van". You need to check and check again. Dispatch makes mistakes. Every hotel room has to be booked direct, every airport's ground transportation system is a mire to be slogged through.

But we've learned and we can handle most things ("we" includes Stu, that wonderful guy I live with who has had to learn more than you can imagine about living with a disability.) And while it is a struggle and a hassle pretty much every day, there's so much I can do.

There are, however, two things I can't get past, and two things that I really really really hate. And they are crowds and wheelchair jokes. Crowds suck because, well, that many butts really aren't that interesting. Because I don't find a bunch of crotches all that interesting to talk with. Because there are only so many belt buckles one can examine. Wheelchair jokes because no matter the intent, they are tiresome. They are tasteless. They are mega-flat out rude.

It's a long standing jokey fascination that we always talk about when it comes to parties: for years, no matter whose house it is, if there was a party in someone's house, even with food and comfy furniture all over the place, everyone would end up crowded into the kitchen. In recent years, since I can't get into most houses, this is theoretical, but it's still sort of funny. And when I do manage to get to a party and setting in in the living room, with great food just a reach away, a beer at my side and a bunch of chairs and couches available, 82 people are still crowded into the kitchen. And I never get to talk with them.

But it's the events, the community gatherings, the city's big gatherings that are just so stinky. Because Wheelchair Invisibility Syndrome sets in and six people cut in front of me in line. Because we sit down for the next band and 87 people come after us and stand in front of us and I spend the entire half hour (we're talking "Folklife" here) hearing the band but staring at peoples' tushes. Because grass is hard to wheel across, and no matter what horn or loud voice or visual aid you have, people stop seeing you when you're in their way and they can somehow overlook you.

Last year, we attended Bouchercon and at one point, a few days in, I developed shoulder pain so severe that nothing - not ice, not nuttin'- could cut through it. It almost destroyed an evening. While we were trying to fix things (I mean i am on a regular regimen of muscle relaxants, anti-inflammation drugs and serious pain meds, and this was B-A-D awful. And we realized that a major cause of this pain was that for three days, I'd been having more conversations than usual. And 90 percent of them were with people who were standing up. Which meant I had to look up. All the time. Which apparently was really bad. Who knew? You get into a great conversation, or you work behind the registration table with all those people coming to get their stuff, those faboo people behind you handing stuff over. Shoulder go blooey. Owie owie oh man. It's now a thing I gotta do, to ask people, interrupt them at times, and say "could you sit down and talk with me?" I have to not let this great moment go on, but i have to stop it and get someone down to my level.

As for the jokes. right. When I first was wheelchair shopping, I asked a friend who uses a chair if she had suggestions (I had two options and was unable to find "wheelchairfax" on the net). I expressed my pleasure that finally the damn jokes would stop. She told me "nope". What? People still see someone in a fancy-schmancy power chair and make speeding jokes? Yep. What? They still make assholey comments about how they want one of those? but it's a wheelchair for godsake! It's bad enough dealing with that when I use a scooter. It's not funny the first 384 times, nor does it get easier to keep calm and carry on when a) a friend b) a total stranger c) a stranger riding past on on a bicycle thinks it's appropriate to express how gee, she could use one of those. This mostly comes from what are pretty clearly able-bodied people. We don't use scooters because we're lazy or did too much shopping. They are prescribed because we have mobility impairments. (And yes, you folks using them at Worldcon, I think you're being smart. Don't aggravate that bad knee. I get that and will not carp.) In general, however, those who are interested ask politely if they can talk to me about my scooter because their mom/brother/father/uncle/wife should be using one. I'll take all the time in the world to talk about that.

People who use wheelchairs use them because they must. We are not wheelchair-bound. Rather, wheelchairs free us. Since I got wheels, I've had regular volunteer jobs, I've chaired two mystery conventions, I've traveled to at least six states to attend conventions. This year, I had to attend my mother's funeral. Recently, we were back east to help deal with mom's belongings and while in West Hartford, Stu and I took the bus to a show of Monet paintings at the Wadsworth Atheneum. I've been to the zoo, to the museum, out to dinner and to plays. It's not binding.

But it's not fun. It's not a carnival ride. It's not a cute little thing I use because my feet are tired. It's not something that able-bodied people should joke about. Interested? I'll show you everything about it. I'll let you take it out for a spin. Maybe. But don't look at me after you've been shopping and say "gosh, I could really use one of those. I've had a busy day." Please, oh please, don't make speeding ticket jokes. Those are akin to asking that 6'10" person if he likes the weather up there. Don't be stupid, okay?

*Langfordian - from Dave Langford brilliant Brit