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Tuesday, December 9, 2014

What I learned from a wheelchair

My first day of college, I saw a guy in wheelchair, in the desert heat, wearing heavy leather gloves. I'm a blurter. What goes in my brain tens to come out my mouth, so I asked him, "Why are you wearing gloves in this heat?" That's how I got to know Rob, who had rheumatoid arthritis, and who explained that your hands get very dirty when you use them to work a wheelchair, because those wheels are rotating from the dirt to your hand. Even if your chair has that silver wheel inside the dirt-rolling wheel, you still make contact, and within a very limited time, hands get as dirty as Rob's leather gloves. 

I knew from reading and from Rob and from other folk I've known in chairs, that people relate to “short” as "this is a child to be ignored." They talk to the person pushing the wheelchair and not the person in it, and because most of us are not as blurty as I am, they don't ask guys in wheelchairs why they're wearing gloves, they just flush and look away, embarrassed to be caught staring. I thought I was pretty savvy about the hassles involved. 

Then, I got to spend time in a wheelchair myself. Not the kind of time where you can put your foot down and move yourself around, or where you can hop out of the chair if you need to. Nope, I was not allowed to put an ounce of weight on one foot or I might permanently screw up the bones. That's when I learned things beyond what my friend, Rob, taught me. 

1) Being in a wheelchair is lonely. 

These days, people don't ignore wheelchair folk in quite the same way Rob described.  They help them. "May I help you?" "How can I help you?" And then, they turn back and talk to that standing person next to them, because, of course, you've either been helped or you don't need help and that's the only reason most people can think of to interact with someone in a wheelchair. 

So: I hereby resolve even more to speak to people in a wheelchair. The weather, the length of the line we're waiting in, the kind of chair they have, there's lots of stuff I can use to initiate a conversation, even if I don't know them. And if I do, I can manage to spend time and be friendly. 

2) It's almost impossible to go to a public bathroom in a wheelchair.

When I'm walking around, I barely notice that heavy public restroom door. Imagine trying to open it in a wheelchair. One handed, a manual wheelchair will turn in a circle. But, the bathroom door must be pushed open with one hand. So you push with one hand while wheeling in a circle. You're not yet trying to aim at the opening, because the door is so heavy, it pushes you back. You push yourself forward. The door opens a little, but remember, you can't just wedge your foot in, so pushing in your crazy circle, inching your way in while being constantly shoved back, you finally get in, (after you have almost peed your pants.) This part usually takes about ten, sweaty, frustrating minutes. Minimum. 

Except, oops, the hallway into the bathroom is at an angle, so while the door is pushing you one way, you have to not only push forward, but then push at an angle. Add another five to ten minutes. 

Still, finally, you get in, and into the handicapped stall, and here it's easy, because there's a railing and some space. So, this is maybe another five minutes. 

Now, however, you have to get out of the bathroom, and that, my friends, is nearly impossible. Because with one hand, you have to yank that heavy door *toward* you, which means roll the one wheel away from the door, so you are still rolling in a circle, but you bang the wall, because you are approaching said door from the oblique angle required by the turns of the inner bathroom hallway. And of course, the door's heavy weight is pulling you forward so even if you manage to open it a crack, it will quickly shut again, pulling you with it. Twice, getting out of a public restroom took me twenty minutes. And I am a healthy person with some upper body strength, not elderly and frail. The only saving grace was imagining it as a Monty Python wheelchair routine. 

So: if see someone in a manual wheelchair going toward a bathroom, I will not only open the door for them on the way in, but offer to wait until they are done so they can actually leave the bathroom someday, and not get petrified in there. 

Or, even better, we can all advocate for a change in public bathroom design. Let's say--requiring an automatic door! That would make all the difference. 

3) You can't go through a buffet line in a manual wheelchair without dousing your lap with food. Remember the one hand rule? You can't move in a straight line in a manual wheelchair unless you have both hands on the wheels. 

Since there's no place to put your plate except your sloping lap, this one is obvious. But--now that I am a grownup, I like getting my own food. I don't want to have to say, "No, more, no, less, no that one. I want to get it myself, if possible. 

So, from now on, I will not ignore someone in a wheelchair when I approach a buffet.  assume someone would like me to prepare a plate for them. I will instead offer to carry their plate while they fill it. Or ask if they would like me to fill it. Either way, I will give them grownup options if possible. 

4) At our neighborhood block party, everyone left the street to stand in small, chatting circles on the grass beside the sidewalk. Our block does not have front driveways. I could not even get on the sidewalk, let alone push the wheelchair onto the grass. Nobody noticed that I was isolated in my chair. These kind, caring neighbors accidentally created community without the person in the wheelchair. And I had to ask someone to help me get food from the buffet. 

5) This part, I don't really know how to say, because it's specific to our family, which includes a special needs kid whose needs don't obviously show but always make us late, no matter how we prepare. Telling me to arrive early to make arrangements isn't going to help. I simply can't manage it if I want my child to join us (which I do.) 

On the most important religious holiday of the year, we arrived a bit late, but in enough time to hear the praying, except--the row set aside for handicapped people was literally behind a giant curtain set up to make the space more intimate for those who were there. And the usher wouldn't open the curtain while certain prayers were going on, as a sign of respect for those prayers. Thus, we got to spend the most important prayer of the year, literally, shut off from the rest of the congregation, behind a curtain. I know and respect the usher, and I knew, rationally that there are reasons for not opening the curtain, and I knew that the congregation does not revolve around me, that they would expect me to arrive early with a disability, that they can't help it if my child has another disability that so delayed us. Still, I have rarely felt so helpless or so shamed. I spent those most important communal prayers in isolation, in anger and in tears. 

6) I know that being in a wheelchair creates very real medical concerns, like dangerous pressure sores. And there are other, minor things that we, as a people, could work to change: older elevators that have buttons too high for a person in a wheelchair to reach, restaurant menus posted above a sitting person's vision, ice cream counters too high to allow you to actually order ice cream. 

Another suggestion is that someone could set up a non-profit to produce an inexpensive 28 inch wheelchair that can be raised to a standing position and lowered to sitting easily by hand. (They are working on such a critter for the VA.) And then someone could set up a foundation that would donate them to people who can't afford one themselves. 

In the meantime, I plan to be aware of those in rolling chairs, and to work even harder to include them in my world and in the world around us. 

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