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Trial by Fire – Day II
Written by Claire on Tuesday, December 5, 2006
The following is the continuation of my previous story, Trial by Fire – Day I. This recounts the events of the second day of my 3 days as a wheelchair user.
That night I had a good night’s sleep, if a bit too short, about 6.5 hours. My room was very close to the lobby and I could hear the doors banging as early risers walked into the lobby for their free coffee and continental breakfast. I’m a light sleeper, and it was something I had worried about, having this "special" room so close to the front entrance. It turned out I was right to worry about it.
So I got up, got dressed, and wheeled out to the lobby for my free cup of coffee (three times), and on the last time I brought my laptop with me to try connecting again. The receptionist that morning suggested a different corner of the lobby, by the fireplace, because he’d seen other people use theirs there, and sure enough, I was able to connect. It was nice by the fireplace, watching the news. There was no table to place my laptop on, but that’s why they call it a LAPtop, right? This new guy, as opposed to the kid the night before, kept running to get the door for me as I went in and out of the lobby. The kid the night before just let me do my thing. I found it interesting to see the different reactions people have. Of course, now this new guy continued to open the door for me because after 15 times going through the door all on my own, I just happened to have gotten stuck somehow the first time he opened the door for me. That’s life I guess!
When I was done with my emails and writing down my impressions of the day before, I decided to go take a shower. I wheeled into my room, got undressed, and wheeled into the bathroom…where I realized there was no earthly way I was going to take a shower in that shower. The showerhead was way overhead out of reach, pointed at the wall, and even had it been pointing at the floor so that the water would fall straight down, the bench to sit on was fixed against the wall at the other end of the shower. Sitting on that bench, the water would fall 3 feet in front of me! So I got dressed, and called the front desk, and asked to speak to the manager. I was told the manager wouldn’t be in until 10am, but they wanted to know if there was a problem that they could help with. I said yes, "There is a major problem with your shower." "I’ll send maintenance down right away," he said.
The maintenance guy showed up, and I showed him the shower. "OH, you can’t reach that, can you?" he remarked. So he lowered the showerhead for me and set it straight so the water would fall on the floor instead of the wall. He remarked that usually this room was used by people who could stand, and they’d never had that problem before. I refrained from telling him that I could stand too, but that wasn’t the point! An accessible room should be accessible. He assured me that from now on, they would think to place the showerhead in the lowest position. He made to leave and I stopped him, showing him the problem with the bench. "There’s still no way I can take a shower," I told him. He didn’t know what to do. I told him they can get a shower bench at Wal-Mart for $30, and he said they would get one. "But I still need to take a shower this morning," I persisted, asking him if he had any chair or bench available that could tolerate the water. He said "I’ll find something," and assured me that he’d be right back. Less than 5 minutes later he was back, with an old but clean chair that was actually covered in fabric. I looked dubious but he said to go ahead and use it and they’d clean it up afterwards. He placed it in the shower for me, directly underneath the showerhead. I thanked him, and he left, and I took my shower without further mishap.
I got dressed and packed, and then went to check out of the room, because I was switching hotels that night, to a nicer one. As I was checking out I asked the receptionist if the maintenance man had told them about the problems with the shower. He said, yes, and thanked me, saying that it was good to know. I responded that it was just for the next guy who comes along. So perhaps I may have indeed made life a little easier for the next wheeler to pass this way. I hope so.
One of the "rules" for wheelchair pretending is to never do anything that would impact negatively on the next wheeler to come along. I took that to heart, but thought, why not take it a step further? Do things that will act positively on the next wheeler to come along.
When I left the hotel I was hungry so I went in search of a nice sit-down restaurant where I could relax for breakfast. I found a place like this at the mall. The hostess/waitress kept on calling me "sweetie". At first it didn’t really register, but then I started watching her closely to see if she called anyone else "sweetie." Nope, just me. I wasn’t particularly sweet, either, I was a little tired, and subdued, and not responding a whole lot to her attempts to be chatty. But sweetie I was.
Next, I thought it would be fun, and necessary, to get some air in my tires. The hand pump I had bought the previous day just didn’t get my tires up to the 100psi that I needed. There was a sports/ bike shop in the mall so I headed over there. I found it a bit strange wheeling in the sports store, among the skis, bicycles, and other sports paraphernalia that a para normally wouldn’t be able to use. I wondered if the salespeople and other customers in the store wonder what I was doing there. I wheeled around the bicycles, looking for someone who seemed to be in charge of this area. No one. Then I noticed a counter with a big sign saying "Service" and there were two employees over there, with bicycles tires hanging on the wall.
Bingo. I wheeled up. There was a high counter (what is it with the high counters???), but a passageway where employees walked in and out of the service area, so I wheeled into the passageway so that they could see me. They looked at me, and one of them asked if he could help me. I said "I was wondering if you could put some air in my tires." "Sure!!" he said. But, it was winter, and they hadn’t worked on bicycles in a while. There was this whole rigamarole getting to the air compressor and unwinding the hose to reach where I was. I said "If it’s too much trouble, then don’t worry about it, really." "No!" they said, "We’ll set you up!" So I waited, they turned on the air compressor, and one of the guys approached my chair, kneeling down next to me, and looked for the air inlet valve. He found it and started inflating the tire. It seemed funny having someone examining my chair so closely and touching it. It seemed almost overly personal, for some reason. In the end, the air compressor couldn’t do more than about 60psi. The guy tried the other tire, same thing. But my tires had started out at less than that, so I was better off. The guy chatted a bit with me afterwards. He smiled, and told me they’ve never had someone in a wheelchair come in to fix their tires before. It seemed a little forced, but I appreciated the fact that he he wasn’t afraid to say the word "wheelchair", and he was trying to be friendly and open, so it was OK. I asked him if I owed him anything for that, he said "No way!" I thanked him, and left, noticing a definite improvement in my wheeling. That was a fun activity, and one I would have to repeat, since I still hadn’t gotten my tires up to the required 100psi.
Shopping on wheels
Next I hit a clothing store where they had lots of things that are just my kind of style. It was a small store and there was only one employee, but she was friendly and helpful without being weird, or overly helpful, or uncomfortable. A lot of the things that I wanted try on were hung up way over my head. The salesgirl told me to let her know if I needed any help, and eventually I did ask her to help me get something down. Usually I hate attention from salesgirls, and I will just get my own things, but I had no choice. She got my things, and I went to try them on. I liked everything, and I decided to buy no less than four different sweaters, without properly thinking about it beforehand! One of the sweaters came in four colors and I liked it so much I decided I wanted another color. I had teal, brown and white to choose from. The salesgirl asked which color I wanted, and I said "It’s a toss up between the white and the brown." Then I realized, it’s winter, there’s dirty slush all over the ground, I’m in a wheelchair…I better not get a white sweater. So I said "It better be brown, white is not a great color for me, I’ll get it too dirty." She laughed easily, understanding but not uncomfortable with my statement. Like all good salespeople, she needed to include some "add ons" to my purchase. She pointed out the 3 pairs of socks for $15 and I was interested, the socks were cute. Again they were in a display where I could hardly reach anything so she got down the ones I pointed out, and one of them had these non-skid appliqués on the bottom of the sock, to keep a walker from sliding on a slippery floor when walking around in their stocking feet. She pointed this out to me, and I laughed and said "Well I don’t need those!" (This turned out to be false, by the way. The non-skid socks do a great job keeping my feet on my footplate when I’m not wearing shoes) "Oh!" she said, and laughed, again not uncomfortable, just seeing the humor in it. I liked her. She bagged up my purchases, and I realized that there was no way I was going to be able to carry that stuff with me. I laughed and said so, and she offered to hold on to my bag for me while I finished my shopping. I thanked her, and continued on my way.
I was waiting for the wheelchair stall in the bathroom at Sears. Someone was in there, and was taking their time. An older lady was waiting for this person, standing next to me. She told this person in a very loud voice to hurry up, someone needed to get in there. Then she apologized to me, and then a minute later, told the person to hurry up again. Finally, this person exits the wheelchair stall, and it was a very, very old woman, walking with a cane, barely able to shuffle her feet, should be in a chair herself, on a trip to Sears. I wondered what was the hurry, I’m young, I’m healthy, I’m SITTING, there was nothing wrong with me waiting my turn.
I went into a store that specialized in candles and gifts with all kinds of pretty things piled into artful displays on the floor. Well, I couldn’t get between them. There was something in particular I wanted to look at at the back of the shop so I negotiated the maze to find an opening. The shopkeeper came to show it to me and I decided to buy it. As I was paying, she mentioned the weather, how it was warm, and the snow and ice was going to melt, she was happy about that. I shuddered and said actually, I preferred packed snow to half-frozen slush! I had gotten stuck in half frozen slush the day before. She agreed with this and said actually, that made sense, she was at her kids’ school the day before and there were several kids "who were, you know…" (she made pushing movements with her hands), not quite able to say that they were in wheelchairs. I smiled and nodded that I understand, and she went on to say that the kids had a hard time in the slush, and she didn’t understand why they didn’t remove the snow if those kids were going to be out in it. I agreed that this was ridiculous. Then she told me that she had an uncle who recently had three strokes, and is in a power chair. The day before he was out on the porch enjoying the sun, and his wife went back inside for something, and while she was gone, he took off! Nobody could find him. He just took a walk by himself, because he felt like it, but his wife was panicking. I said "good for him" and I mentioned that sometimes you just need to go off by yourself instead of having everyone hovering around you. (I may be a new wheelchair pretender but I have had other health problems in the past, I can understand this need perfectly regardless of whether I’ve experienced it because I’m in a wheelchair). I thought it was excellent that he had given his wife the slip. I finished paying, said goodbye, and turned to leave, and couldn’t make my way out of the store, I was stuck in the maze again. I said "I’m stuck!" and "How did I get in here, anyway?" and she thought that I came in "that" way. I agreed, and managed to find my way out again.
I wondered why such nice people would make their store so difficult to negotiate and not act apologetic about it in the slightest.
Next I went into a little store that sells cooking utensils. I picked up a few things that were handy for baking cookies. The saleslady asked me "Are you baking cookies?" and I answered "Yes I am." But I wondered, isn’t it obvious I’m baking cookies? Did she think I can’t bake cookies because I’m in a wheelchair? Or would she have said that kind of inane thing to anyone…people have said inane things to me as a walker, I don’t have to be in a wheelchair for someone to say something inane to me.
I wondered if I was being slightly paranoid. I decided that I probably was.
I came to a bookstore, and wheeled in. There were boxes everywhere, as they were unpacking some new shipments, but I couldn’t get around the boxes. No one was currently dealing with the boxes, and were no salespeople around, so I leaned down, and shifted boxes, picked up some empty ones and piled them somewhere so I could get by. I didn’t feel in the least apologetic about messing with their stuff. I still can’t believe how hard it was to get around some of these stores. I continued into the store, and I noticed out of the corner of my eye a salesperson moving boxes out of the way – she had seen me, and got the message. One thing about bookstores, you can only reach the first 3 or 4 rows of books, with more than half the books totally out of reach. I saw something I wanted and peered up at it, considering what to do. I do really hate to ask for help, when in a store. But a salesperson came up and asked me if I wanted any help, so I asked her to get the book down for me. After that she followed me around as I perused the books, but I didn’t really mind, because if I did want something, I really did need her help. She chatted with me and pointed out some good books, talked about a good movie she saw recently. I went to check out, and there were about three people in front of me. The lady standing in line in front of me turned around and saw me. She indicated that I could go ahead of her. There was no real reason for that, she had two books, I had three, and I was perfectly comfortable sitting. I told her to go ahead, she was there before me.
Perhaps it’s just that people feel bad that I’m in a wheelchair, so they come up with these little ways to try to make it easier for me? Or to ease their consciences?
At this point, I was starting to get really tired. I had wheeled around for half the day the day before, and all morning. My arms were starting to feel like jello and I was feeling very sleepy. I decided I’d had enough, although normally, if I were walking, no way would I have left so many portions of the mall unexplored. But I was fading very quickly, my body simply not used to this kind of activity.
I had to return to the clothing store to get the clothes I purchased. I got the bag from the salesgirl and it was just way too big. I couldn’t wheel with it on my lap. I hemmed and hawed, wondering what to do. I asked the salesgirl if I could go back into the changing room, because I wanted to try to attach the sack to the back of my chair. She said sure, so I did that, and I transferred to the seat in the changing room so I could get to the back of my chair. I tried to rig up something with my leg strap holding the bag onto the back of the chair, but couldn’t get it to work. I finally ended up looping the leg strap through the handle on the shopping bag, and then putting the leg strap around my neck. It was still a huge lap full, but at least it wouldn’t fall off. I felt like an idiot. In fact, I said so to the salesgirl, adding "Usually I only buy one or two things." "Oh, so you know your limits?" she answered. I replied "Yeah, but today I surpassed them!" But the truth of course is that I had no freaking idea what I was doing when I bought so much stuff. Now I know. I wheeled through the mall like this, feeling silly, but I managed to get everything back to the car, and loaded.
In the parking lot, I saw an idiot illegally parked in disabled parking space. A man walked by, and asked me "He’s not got a permit?" I said no, he replied "My wife is handicapped too and that drives me nuts! " If his wife is handicapped "too" then I must be the other handicapped person! That gave me a little thrill of pleasure, regardless of how politically correct the expression is. Even if I didn’t have a parking sticker myself! I was in a wheelchair, and I was parked in a regular parking space, albeit one that had lots of room for getting my chair in and out of the car.
Strangely, throughout the entire trip, I managed to grab the best possible parking spaces. They were always in front, with space to get my chair in and out, and usually right next to the disabled parking. It was uncanny really, that I should get these spaces when I most needed them, even when the parking lot was full, or all the good spots taken, someone would pull out of a great space just as I drove up, or every space except for that one good one will be taken, and I’d just pull right into it. It was as if the guardian angel of parking spaces was keeping watch over me!
I drove to the hotel, a different one this time, because I was unable to get two consecutive nights in any one hotel. I pulled up to the reception area, unloaded my chair, transferred in, and wheeled inside. This hotel’s doors had those buttons you press for the door to open automatically for a wheelchair user. I liked that, it was the first time I’d seen it on my trip. Check-in was uneventful, and someone brought my bags to my room for me. I spent the next hour vegetating in my room, too exhausted to do anything much. My arms were like jello. I laid in my bed for a couple hours, not able to sleep, but just needing rest. My whole body was jelly. Even my legs. I was EXHAUSTED, finished, caput. Feeling the need for nourishment, I went to the restaurant and ordered lunch, but waiting for it, I could barely sit up straight, and asked the waitress to have it sent to my room. I lay like a rag doll in my bed for a while, ate my lunch, then decided to try going online to check my mail. I couldn’t get the wireless Internet connection to work (again!), so I went out to the front desk to ask for help. It turned out the connection wouldn’t work in my room (again!), but it did in the lobby. They offered to give me free Internet access to compensate. I sat in the lobby with the computer on my lap, typing, and the manager came over and asked me if I’d like to have a little table to place the computer on. I said yes, and they set me up very comfortably. I was so tired though, that I don’t stay long, and went back to my room. I rested for awhile, then returned to the lobby. I found that I craved human interaction for some reason. I was very tired, but I needed to write, and I needed to be around people, so I went back and forth several times, alternating between laying on the bed and going to the lobby with my computer, for the rest of the afternoon and into the evening.
I enjoyed interacting with people and most of them seemed to enjoy interacting with me, I think it made them feel good to help. :o) So that was kinda cool.
I wanted to go out into town and do something, but right then I could barely open a door and couldn’t even begin to face getting the wheelchair in the car! I found that by far, getting the chair in and out of the car and setting it up/breaking it down was the biggest hassle surrounding wheelchair use. I had quickly begun to tire of the routine. But at the same time, I loved the real-life experience. And I loved wheeling.
I had dinner in the restaurant at the hotel. As you enter the restaurant and approach the hostess’ desk, it’s all one level. The dining area is a step up. There is one lonely table there behind the hostess’ desk and that’s where they seated me for lunch and dinner, both times asking if I could get up the step (I said no) and both times saying they’d help me (I said no). I had no wish to try to negotiate that step nor have strangers handle me in my wheelchair. So I sat at the one table, feeling conspicuous. After dinner, I felt restored enough to try going out again. I decided to go to Wal-Mart.
I went to Wal-Mart, bought socks and an FM transmitter for my iPod. Balancing the socks on my lap, there was a lady blocking the entire aisle with her shopping cart. I had to stop quickly to avoid her, and I started to drop the socks, I let go of my wheels to grab them, lost control, and crashed into the shopping cart! The lady laughed easily, as if it was no big deal, and she said "Are you all right there?" but not in any overly-concerned kind of way, just kind of seeing the humor in it as clearly I wasn’t injured or anything. I said "Yes, sorry!" and moved the shopping cart aside and I continued on my way. I was so embarrassed!
I wondered if that kind of thing happened to real wheelchair users or if it’s just because I’m a stupid newbie.
Sean had warned me about balancing stuff on my lap, and I swear I had those socks balanced for 10 minutes as I wheeled all over the store, but that one moment where I had to stop quickly, and it was all over.
After Wal-Mart, I returned to the hotel, and went to bed, utterly exhausted.
In spite of parking, and weird comments, and crashes, and falling over backwards, and any number of inconveniences and embarrassments I had suffered to this point, I loved being in a wheelchair. How weird is that? It’s a royal pain in the ass, but it felt right. I felt like ME. I felt a deep feeling of peace when in the chair, especially out in public. I could enjoy myself, free of obsessive wishing to be in the chair. Could I do this forever? The way my arms feel right then, I don’t know. My shoulders were giving me fits. I remember my cousin after 20 years of wheeling…not good. But still. But still. I could use two weeks of full time wheeling just to see. I enjoyed interacting with people from my chair. Even if they were a bit weird, it was fun. My being in a wheelchair impacted nearly every interaction I had with people.
[tags]Wheelchair, Pretending, Pretender, Transabled, BIID, Wheeling, Wannabe[/tags]This entry appears in Claire's Thoughts, Other's Stories, Other's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
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6 Comments
Fascinating stuff, Claire. There are so many things I think I can see as impediments because I’ve been around PWDs most of my life. But until you live it, you just don’t see it. Thanks!
Just one stupid question… do you say “handicapped” or “disabled”? What is appropriate in which situation? Sorry, English is not my mother tongue, and I don’t know the special differences in politeness.
To Karen:
English is not my mother language either, but in spite of the fact I wil try to answer. The word “handicapped” has been considered politically incorrect for some years. The reason is the “handicapped” consists of the following words: “hand” and “cap”, so the usual explanation of the word is that a handicapped person is “a person with his cap in hand” i.e. a beggar. Surely, years ago, beggars used to stand at corners with their caps in their hands, sometimes showing their injuries, stubs etc., and in some countries or towns they do so till today. This is the reason why English prefers the word “disabled” to “handicapped”.
Although some other words have been forged – usually by media – like “people with special needs” or “challenged people” many disabled people do not like them. As one of my friends said: “I do not have any special needs, I have the same needs as anybody else, a job, a home, good meal, red wine, to love and to be loved. Just sometimes, I need a little help.” (She has been in a wheelchair for many years.)
Thank you, Bobby. It is important to use a polite word that’s not euphemistic. I think in my language the word for “disabled” is a taboo and only used if someone has something serious. “Handicapped” (stolen from the English language) is for minor cases.
I always thought being politically correct is just a waste of time. But now that I have experienced encounters between my (slightly disabled) boyfriend and the outside world, I made up my mind. Some people say things that are just rude. Maybe that’s because they’re insecure. I want to be prepared and not insult others because of my insecurity/curiosity.
I can’t let the recent comments go by without adding that these posts from Claire have been massively inspirational for me.
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1 On 5 December, 2006, Sophie said:
The more you wheel the more your arms and shoulders get used to it. Your arms aren’t really built to get you around but the muscles build up as you wheel more and more. I find I hafta go up another size for tshirts etc (when the sleeves aren’t stretchy) cuz my muscles round my shoulders are getting bigger.