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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