Friday, January 25, 2008

"Some of My Best Friends Are Disabled..."

The embarrassing part of this week is buried near the end, if anyone wants to skim.

"I'm not disablist, some of my best friends/family members/coworkers/acquaintances/people I knew a decade ago or when I was in kindergarten are disabled." The highlights of getting lunch and doing errands around my Very Big Workplace:
-Weird mix of baby talk and flirtation from an employee when I ordered lunch. At least he seemed to get some of the issues, recognized I couldn't reach.
-There was a very long line and many people needed to cut through to a different part of the cafe. So everyone chose to cut in front of me rather than in front of someone standing. Because I'm just a physical object, you know. Dangerous for them because of the tight squeeze (I'm surprised no one tripped or fell over me).
-Before I could complete my transaction, young woman behind me stepped up to the counter and crowded me out. Acted surprised and upset when employee and I kept interacting. I have to pay, get my drink and number.
-The disability accessible counter was blocked with signage and advertising.
-Some people were very helpful opening doors since security had forgotten to unlock the auto-open doors (as happens 50% of the time, I need them always). But one woman was completely annoyed that she had to get up off her duff and open a door for me. Couldn't understand why I wouldn't do it myself. I did so, later in the day, when I went to a building and no one was around. But I shouldn't have, vertebrae and muscles still hurt. And it's difficult to do, to position just right to grab the handle and then to open the door without blocking it and go through it. Requires minute position adjustments and danger of smacking into glass of other double door full force. And then, once in, I really noticed the next set of doors, separated by a couple of feet from the first door. No room to reposition after you're sandwiched between the two.
-One man helped me leave a document at someone's office, but had that stupid "did my good deed for the day" face. People really overdo the emotion.
-Acquaintance whom I hadn't seen in a long time wouldn't talk to me, acted very tense.
-Various people got that, "who let her out?" look. They lost the look if someone came up to me in the hallway or in the cafe. As if I need someone else to validate my presence.
-Got a scooter leaner. Don't lean on the chair, people. I know your back hurts, too. I've been there. I'm sorry. Pain and fatigue are miserable. But don't lean, pretty please.
-Got teary and guilty reactions from some people I barely know. Guys, I felt the same way last week and you didn't show any empathy then. I felt like crying then, not now. And a gasp, and a "what happened?" Same issues as usual--you just couldn't see my disability before. Not that you can see it now.

But there are also a lot of cool/saavy people.
-I had to get a male coworker to take me to the restroom since automatic doors haven't been installed. Fortunately, it was no big deal to him or me, but I'd rather be able to take myself whenever.
-The maintenance guys came by to talk to me directly about a few modifications and to apologize that some work they thought had been done was done in the wrong place. It helps if people give them the orders, though. They said that one restroom door required 17-18 lbs of force to open; ADA allows 5 lbs of force. No wonder I had such difficulty. I had to wedge my foot in and use my elbow to shove it open--I couldn't pull hard enough with my arms and upper back. They almost ordered the automatic restroom opener on the wrong restroom, the very cramped one, because they were too afraid to go in to check it out. They did reinstall one disabled stall lock from 5 1/2 feet high to waist high; I almost don't have the heart to tell them they did it backwards (the lock is on the door and the pin on the wall, meaning I can't use it to pull the door toward me and must pull very hard at the top or bottom of the door to close it). But their efforts are a lot more than I can say for the VPs who let my requests sit on their desks for two months.

And all this in addition to trying to get all my work done and being in pain.

And I learned more about access issues and my limitations:
-There's a big bump between two abutting sidewalks that stops my scooter hard. No way around it--it's the single path to our car. I can barely get over it. I don't know how other scooter/wheelchair users have been navigating it. I had to stop, back the scooter up, and charge at it full speed ahead to get over it, kind of worried that it wouldn't work. Hurt my back when it bumped down hard again.
-I got stuck in a one-person disability bathroom. I could get in, not out. Door was behind me, can't drive and open door behind me. Arms not long enough to hold door open and back in, and creates low back strain anyway.
-I strained my back too much using photocopier too long, trying to put on my coat a few times, slamming elevator buttons as I drove past before the doors closed, slamming into furniture since even at low speed there's not close enough and there's too close, trying to hurtle at the correct elevator before the doors closed again, trying to close doors behind me (way more difficult than opening), trying to reach for post-its and phone and books in ways I normally wouldn't because it was too much of a pain to back the thing up and turn it around just to get one thing.
-Here's the embarrassing part: I slammed into a table so hard at someone's interview and presentation that the whole table slid forward by about a foot. Nerve wracking for me and job candidate. I had almost asked someone to trade places, but no, I had to try to go around to a seat out of the way. There should have been enough room to get through. I guess I got distracted. I was very, very tired at that point, especially after getting into the building myself and getting stuck in the bathroom. Some of these people I don't want to look in the face for a while. Ironically, it will take me using the scooter competently in front of them for a while to make me (and them?) forget.

I found every bump and irregularity in the sidewalk because it jars my spine. Fortunately not as much as walking does, but it increases pain in upper back a lot. Until yesterday, my upper spine had not bothered me in a while, except for loss of flexibility/motion. I've lost four pounds in the past few days. My PT was right, I am way more active in this than being stuck at home.

My stomach bothered me so much. Later in the day, I thought I need not have worried so much because I really was able to get around by myself and get some work done. The end of the day soured that thought, though.


Elizabeth McClung said...

The first thing that changed about my personality after a few weeks in the chair is my level of assertiveness. I had many of the same experiences and just go to the point where assuming people can figure out that you can't reach X or Y or that you were here first is for some reason too much to ask so I just say, "Please hand me that," or, "Sorry, you need to wait behind me, I was waiting here."

I hope your friends adjust, I wish I had some insight into the people who run away from those in chairs but since one is my mother, and another is my landlady, I still have no insight after 10-11 months.

17-18 lbs- geez, that is insane.

As for the bump, do you have floater wheels on your scooter, I have these floating small wheels a couple inches off the ground on front and they are supposed to take the bad curb cuts and help lift the chair over them. Of course, not having gone outside yet, have no comment.

In my manual, I have to back into: toilet stalls, offices, dr. offices, dental offices and pretty much anything else with a linear space. First month took me long time, now I do it without looking. As for hitting table, have done that too many times to count so um, good luck!

But seriously, sounds better than you are out and seeing what works and doesn't and now you can address that and people are responding and hopefully things get more accessible?

FridaWrites said...

Thanks, I think I will get the floater wheels after being out this week--they're antitip, but you're right, they probably would help the scooter manage the front end of a bump. It's not an option on the cheap scooter. The advantage of using the cheap scooter this week is that I can see everything that's wrong with it and why I'm completely justified upgrading--its ergonomics, esp. the short platform, causes a lot of pain. I'll miss its small turning radius, though.

Yes, I can see myself getting more assertive, though I'll have to try not to get too mean to rude people when I get PMSy. I don't mind helpful people who just can't figure things out quickly, like how much room I need to turn or that they should stand outside of the door when they hold it open to allow me through and to keep themselves from getting hurt.

Liz said...

It is a good thing to role play as practice... especially that thing where people bump into you or cut in front of you in line or pass through or expect you to move because you must be "in the way" even if 20 other people are standing just as much in the way. Would you mind going around, ask someone else to move, please, don't bump into me, etc. All these requests or reminders DO get taken as hostile and met with defensiveness or hostility. Over time, it all adds up and helps.

In restaurants when waiters approach, act to take up more physical space. I stick my elbows out and lean back, as they walk up, so that they don't lean on my wheelchair -- which otherwise, nearly always happens.

The other day two women faltered and acted deer-in-headlights and started apologizing to me when I was not even within 20 feet of them. I stopped and looked at them and said "Why are you sorry?". They could not answer with anything other than nervous laughter. "No... really... I'm curious. I'm 20 feet away from you. I see you. You see me. Why are you apologizing to me and acting confused? What are you sorry about? What's going on here?" No result really, but it might make them think.

Every time I manage to do that kind of thing it feels exhausting, but like a little victory.