Diane Arbus: “My favorite thing is to go where I’ve never been.”
“What does it mean to go where you’ve never been? Does it mean to go to a new place? Or, to paraphrase Marcel Proust, to see a familiar landscape with new eyes? Write about the experience of going where you’d never been before. What did you see there? How did it make you feel? What did you learn? How were you changed?”
The Nation of the Challenged
Johnett
I’d never been to anywhere in Pennsylvania except for Philadelphia when I was still in high school. But I had agreed to come to State College to do a workshop for a group of deaf education teachers and speech pathologists on literacy. Months ago I agreed to this, having had long discussions by phone and email with the conference coordinator for almost a year regarding their reading research project and how to tailor my training for them. Little did I know when the conference date was finalized months ago, that I would have to have foot surgery about a month before my presentation.
When I finally gave in to the idea of surgery, I was confident that I would be easily up and around. Maybe I wouldn’t be able to stand up throughout all three days of training, but I would surely be good to go. After all, it was to be a “minimally invasive procedure”. Most people are able to begin weight bearing within a couple of weeks and are doing well enough to resume near normal activity in a month. The pamphlet even quoted a gymnast who had the same surgery, saying that she was able to compete again three weeks after the procedure. Competition level? Well, I wasn’t worrying about bouncing around or running races, so boarding an airplane and getting to and from the hotel restaurant shouldn’t present too much difficulty. That’s what I thought, anyway.
The physical journey to and from State College was by far easier than the path from surgery to partial recovery. Dealing with the level of pain I experienced, which was much greater than I expected, was its own devilish trek, and one I really don’t want to revisit at this point. I’ve only recently hobbled past the outskirts of that region and have no desire to turn back or even glimpse it in my rearview mirror.
Aside from the pain, just the effort it took to move my body from chair to restroom to bedroom was enormous. My weighted boot became an albatross around my ankle rather than my neck. I couldn’t bear weight on it at first, so had to hold it up behind me as I hopped everywhere on my walker. My hands became red and sore from the friction created by carrying the bulk of my weight on my palms rather than my feet, developing thick calluses after a week or so. Many times I would stand up to toddle from one room to another and have to look for an intermediate point where I could sit down and rest, not 15 feet from where I started. I would end my journey by collapsing on the toilet seat, shaking, and postponing the inevitable minute when I would have to push myself up again and repeat the process.
Before this experience, I had always taken for granted my body’s ability to keep on going, Energizer Bunny style. I wasn’t very strong or very fast, I knew, but stamina was my long suit. Now, just walking through my house brought me face to face with my limits. I became so frustrated and angry at myself, at my obvious weakness, that I dissolved into tears several times a day. Depression threatened to become not just a bleak side trip, but a permanent destination.
Eventually, of course, I had to leave the house, and when the distance was too far for me to manage on my walker (one horrifically memorable trip to a doctor’s office springs to mind), I had to use a wheelchair. While this made it possible for me to go out and to do things, it still left me dependent on someone else. I could not lift the chair in and out of the trunk. I could not propel myself up most ramps or down long hallways, particularly on carpeted floors. And while Rose, my partner, never complained about the added burden of becoming a reverse rickshaw driver, I constantly worried about taxing her strength as well as her patience. I was certain my less than stellar attitude and behavior made this dependence more difficult for us both, yet I was unable to change it.
After a couple of more weeks the pain in my foot lessened, though it still came and went, like regularly placed billboards on a stretch of highway. I finally gained the strength to actually walk with my walker, distributing my weight more evenly, and lessening the stress on my back and left hip caused by an off-balance gait and the difference in height between my left and right legs. Still, in the grocery store I depended on the electric carts, and knew that when I left for Pennsylvania, I would need to have accessibility to both my wheelchair and my walker.
I really didn’t know what to expect, or how to even begin to prepare. I was suddenly mobility impaired, a disabled person; in the words of Robert Heinlein, “a stranger in a strange land”. I was now a citizen of the nation of “The Challenged”, and I can tell you that the naturalization process leaves something to be desired.
After several searches online, I discovered that I could indeed carry both my walker and my wheelchair as additional personal items without a luggage fee. It was my decision whether to check them at the gate or to check them through, just as you would check luggage. I could indeed be given courtesy service at each airport, having someone meet me with a wheelchair and get me to my destination. However, I didn’t know that there were different levels of service, and I mistakenly requested service for a person needing to be wheeled onboard and to the seat. Luckily the reservation agent caught that error and assigned the right level of assistance: WCHS (wheelchair assistance with stairs or long distances). She also changed my seat assignments to make it easier for me to enter and exit the aircraft. Thus prepared, I thought I was pretty much good to go.
The first glitch came when I was boarding the airplane for the first leg of my trip. I was prepared to use my walker to go down the jetway and to my seat. I should also mention that I had a really heavy bag with my speaker’s notebook for my presentation (about a 5 inch binder) and my computer to carry on. This was my “personal item”. In addition to this I had a small suitcase (with more presentation materials) to go in the overhead bin. I’m sure I was a sight, trying to keep balanced with a heavy bag on my right shoulder (which kept falling down to my elbow), pushing the walker with my right hand, and pulling my little red suitcase, the one that I call my “bad dog” because it doesn’t walk with me correctly, with my left hand. I’ve never walked a jetway that seemed so long before.
When I managed to get to the end, there was a reinforced vinyl “bridge” connecting the plane to the jetway. And try as I might, my walker was too wide to go across it. The stewardess told me I’d need to check it planeside, like a baby stroller. So, while other passengers bumped their way around me, I folded my walker, readjusted, and somehow made my way onboard, nearly falling over backwards when I lifted my book-filled carryon over my head.
I collapsed in the seat. Round one was over. And with the exception of a trip to the lavatory (in the back of the plane) where I felt like an 18-wheeler in the bicycle lane, the rest of the ride to Detroit was okay. And, lo and behold, there was someone up at the top of the jetway to wheel me to my connecting gate.
I did have quite a wait, but that meant time for dinner, and there was a Fuddrucker’s right across from my waiting area. I was in luck. The only problem was what to do with my luggage? I couldn’t carry everything with me, and “airport security measures require that you never leave your baggage unattended”. When I asked the gate agent, he informed me that as an employee he was not allowed to attend someone’s luggage, but that I could ask a fellow passenger to do so. I asked the young man sitting next to me in the lounge if he would do this, and he agreed, although he was not there when I came back.
To his credit, I was away quite awhile. Even though I ordered my veggie burger to go, the teenaged boy who took my order informed me that it would take about ten minutes to prepare. I hoped to sit at a table and wait, but every seat was occupied. I passed the time moving between the trash can and the condiment table, trying to get out of peoples’ way. As a fat person, I’m used to doing this, used to apologizing for being in the way even though there’s nothing I can do about it. (Talk to other fat people. I’m sure you’ll find it’s a common experience.) But when your bulk is increased by an extra foot of space and surrounded with metal poles, it’s an even more uncomfortable experience. Between apologizing, shifting my weight to and from my sore foot, and worrying about my luggage, the ten minutes seemed to drag on for thirty. I was very glad to hobble back to my gate area, balancing a clamshell container, plastic utensils, and a cup of soda in one hand while I maneuvered the walker with the other.
The next plane, the one that would deliver me to State College, was even smaller – a turbo-prop. We had to gate check even the carry-ons that we had stowed in overhead bins. But the bigger surprise came when we landed, and the stewardess lowered a set of stairs down to the tarmac. “I didn’t realize we would have to deplane down these steps”, I said. She informed me that there was a push up ramp “somewhere out there”, but I’d have to wait for all of the other passengers to depart, and then they’d locate it and push it up to the plane. “It’s not a problem,” she said, several times. But, being that it was already past 11:00 p.m., it was a problem for me. I decided to try the stairs, which I made only because a baggage attendant came up and took my huge shoulder bag so I could grip both handrails. Each stair was much larger than a normal step, and the thick fog made the surfaces fairly slippery. But I figured that I could always sit and go down on my butt. It would be embarrassing, sure, but less so than a broken neck.
An off-duty airport employee wheeled me into the terminal with me holding on to two bags and a walker. I had arranged for the hotel to send their shuttle for me. The driver, I was told, would meet me at the baggage claim area. In State College, this meant at the curb, where waiting passengers descended on the luggage carts like sharks on fresh chum. Fortunately, the shuttle driver was very helpful and kind, and soon we were on our way to the historic inn on Penn State’s campus, not too far away.
A few days before I had called the hotel and asked if they had any accessible rooms available. I was told that they would check, but that they were on a first-come-first-served basis. And since I was there for a low incidence disabilities conference, well, I didn’t hold out too much hope. Luckily, I was wrong, and my room was equipped with larger doors, and an open shower with a built-in shower seat. Or, as the desk clerk informed me, I could wheel my chair right in and shower in it.
Room 1045 was on the first floor (there are only three floors in the inn), but the serpentine route to my room seemed to stretch on like an airport runway. Wheeling through the blue carpet felt like swimming through grass, and pretty soon I gave up and walked behind my wheelchair the rest of the way. (A process I repeated multiple times over the following days.)
As for the rest of the trip, things were pretty good. It took me much longer to get to and from one place to the next. I had to plan trips to the restroom in advance. Eating from the hotel’s buffet required either a helper to serve and carry my plate (which I didn’t like), or one trip to scope out the fare and a second quicker trip (just hobbling in my boot) after I parked my wheelchair at a table. As for presenting to a room full of people for three days, they were a very forgiving audience. I sat in my chair most of the time, but made my way around the room during small group activities, and sometimes just when my back and hips couldn’t take sitting any longer. The days were long and tiring, but the workshop went well, and was very well-received. In the end I was very glad that I kept my commitment to go.
What about the trip back? There were more glitches, of course. The airline didn’t check my wheelchair through, but at planeside. There was bad weather on the first leg back, of course on the turbo-prop, which didn’t make things any better. I wanted to get to the lavatory, but couldn’t risk trying to walk all the way back. And we were delayed getting in to Detroit, so I barely made it to my connecting flight before they boarded. Finally, when I arrived in Austin, the wheelchair escort didn’t show, and I was so tired that I piled everything on the chair and walked from gate 2 to 10 and down to the baggage claim. When Rose came in I kissed her quickly and “ran” to the ladies’ room. And getting back to the car was tricky as well, since there wasn’t a Sky Cap to be found anywhere.
But I was home, thank Goddess. Home. And even though I’m still learning my way around this strange land of which I’ve become a short-term citizen, home is still the sweetest place to be.
