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Blog > Thoughts > Other's Thoughts > Claire's Thoughts > Trial by Fire – Day I

Trial by Fire – Day I

Written by Claire on Tuesday, November 28, 2006

Last week, I took the trip of a lifetime. I lived a dream. I did something I have always wanted to do. For the first time ever, I spent time in a wheelchair, in public, doing everyday things. For 48 hours, I lived as a wheelchair-user. To say it was an eye-opening experience would be a gross understatement. Every minute was an adventure, and nothing, nothing I did, wasn’t somehow impacted by the fact that I did it on wheels. Here’s what it was like to experience the world while wheeling.

The night before I left, I had to finish some chores that involved a lot of holding things over my head, and I was very concerned for my shoulders the next day. Sure enough, just sitting in the car on the drive over, my shoulders were bothering me. I was very worried for how that was going to impact my wheeling, and felt rather resentful that I should be required to do this stuff when it might ruin this trip I’d so been looking forward to.

The day I was to leave, I could think of nothing else. I planned to take off after lunch, after getting lunch for my husband and kids who all come home from work and school to eat, but in the end, the anticipation was too much, and after making sure with my husband that he’d be there to get the kids’ lunch, I took off at about 11:30, as soon as I was done packing.

It’s a 2-1/2 hour drive to Greensboro, so I had burned three CDs of all my favorite, happy, upbeat music, and was psyched on the drive over, singing out loud, belting out my favorite songs, in an excellent mood. Shortly after leaving town, I passed an acquaintance who lives near me, going the other way. He’s a paraplegic. I couldn’t help thinking "If you only knew where I am going and what I am planning to do…" I also couldn’t help that pang of longing that I always feel, when I see him. Not longing to be with him, just longing to be like him. "You lucky bastard!" I screamed to the reflection of the back of his pickup truck in the rear-view mirror. But I didn’t think he’d appreciate the sentiment.

I planned a stop at a convenient half-way point, Frederickville, for a potty break and a bottle of water. There is a gas station there with a bathroom and convenience store. I pulled in the parking lot to find someone illegally parked in the accessible parking space, but I couldn’t use it anyway, because I don’t have a permit. There was just one space left, and it was too narrow for me to get my chair out. So I backed up, and waited in the car for someone to leave. Eventually, the guy next to the empty space pulled out, leaving two adjacent parking spaces empty, and I pulled into the middle of the two, taking up half of both spaces.

Wheeling in the snow

I took a deep breath, and I pulled out my chair…and this was the first time I had ever tried getting my chair out of the car, putting it together, and transferring into it, in my entire life. That went OK, although later in the day I realized I was going about it wrong. However, I managed to get myself into the chair, but then had some trouble in the slush, my wheels getting stuck and spinning, but managing to free myself with enough pushing. The guy who was illegally parked in the accessible parking space met me as I approached the door, and he looked surprised, but held the door open for me. I wonder if he felt guilty! There was a bit of a step, and I had to pop a small wheelie and grab both sides of the door to pull myself in, and I didn’t do it very gracefully at all, and it was rather embarrassing. I thanked him, wheeled into the store, went to the bathroom, which is nice and big and accessible, but I couldn’t get my pants on and off without standing up. Already my plan to not stand up from the time I leave home to the time I return had been foiled, because I have never figured out how to get my jeans on and off sitting in the wheelchair. I suppose I would have learned that at rehab, had I been so lucky.

Coming out of the restroom I came face to face with a lady coming in, she says "whoops!" and makes this huge detour so that I can get by her. She could have just stepped aside, but instead went about 10 feet out of her way. I wondered, am I contagious? I grabbed a bottle of water out of the fridge, paid for it, and left, this time an old lady held the door open for me. As I try, very awkwardly, to negotiate the change in level at the door, I dropped my water bottle, and had to pick that up, and felt like a total idiot. I got back into the car OK, and kept driving towards Greensboro, another hour. Inauspicious as my inaugural outing was, I was still rather excited about it.

The sun came out. We had had crappy weather for weeks and I hadn’t seen sun in ages! I wondered if it was a sign. As I approached Greensboro the excitement mounted. I was happy, but nervous. I couldn’t wait for this experience, yet was afraid of screwing up, of getting stuck, of any number of things.

I had planned for my first stop to be the wheelchair store, so that I could start out with new tires. But driving through town, I found that it’s not where it used to be, and had no idea where it is now. So I changed plans, and settled on the mall for my first stop. I pulled into the Sears parking lot, and I snagged a "for people with small children" parking space next to the disabled spaces and started getting my chair out. A young man was waiting for someone by the entrance to the store, and he yelled across the parking lot to me asking if I needed a hand. I told him no thank you, smiling. As I wheeled into Sears, I found it a bit difficult to go up the slight incline from the curb cut to the automatic doors. It was too steep, and I had to push mightily with my arms. I was almost afraid I wasn’t going to make it. But I did. It really wasn’t that steep, I just lacked technique and strength. The strength would continue to elude me the rest of my trip, but the technique slowly improved with practice.

Once inside the store, my first stop was the bathroom, in the accessible stall. As I wheeled up to the bathroom door, I wasn’t sure yet how to open the door myself and go through it, but someone opened the door for me as I entered the restroom, and again as I left. At that point, I still had yet to negotiate one of those doors on my own. It was something I had been worrying about.

I wheeled through the store, noticing how people looked at me, or didn’t look at me, or got out of my way when there wasn’t room for both of us in an aisle, or apologized for absolutely no reason… (???). I found that last one very strange. I would wheel somewhat near someone, but be perfectly able to go around them, or simply pass them, and they’d apologize, and unneccessarily move aside their cart or their baby carriage.

What are they sorry for? Why do they think they have to move?

The mall in Greensboro is built on a hill, and to go from one end to the other you have to go up a series of about 5 or 6 ramps, one every few stores. The ramps are way too steep! I couldn’t even begin to push myself up the first ramp I encountered. I had to get up the ramp(s) by grabbing the railing and pulling myself up, hand over hand. People looked at me, and I felt strange having to do this, and strange having them look at me, but I gotta do what I gotta do. I have to do this several times to get to the other end of the mall, and on the way back, the ramps were too steep again going down, and I found it a bit scary. I had to really grab my handrims to keep from going to fast, and felt tilted forward at an alarming angle.

As I was wheeling through the mall, an old guy smiled at me and said "You need one of those power chairs!" I smiled back and replied that then I wouldn’t get any excercise. He barely listened to me, and continued "I just saw a guy go by about 20 miles an hour in one of those power chairs" and I told him that he must not be getting any excercise, but that I was. I smiled, and moved on. That was to be my first ever weird wheelchair comment, but there were many more to come! A bit farther on, a father rescued a toddler who ran right in front of me, I had to swerve. I considered the fact that maybe I was going too fast.

I stopped at a booth selling lottery tickets and which was apparently manned by volunteers for (Something) for the Blind and Visually Impaired. I figured that they’d be helpful and not act weird. I was right, I asked the lady if she knew where I could get a phone book. She handed me one, and as I flipped through it I couldn’t find "Wheelchairs R Us". She asked me what I was looking for, and I told her. She said "Oh yeah I know that place"…in the end, it’s called Wheelchair Suppliers now, and so I left the mall to get new tires. I was so nervous!

Wheeling in a winter wonderland…

I drove up to Wheelchair Suppliers, parked, and got my chair out, but for some reason this went very badly and I had a horrible time getting the chair together, the whole time worried about who was watching me from inside the store. I got stuck in the snow – there was more snow in the parking lot at Wheelchair Suppliers than there was at Sears, rather deep and slushy, they had made no effort whatsoever to remove it from the parking lot, only from the entrance to the store. Again I felt like an idiot, and was worried about who was watching. But still, I found the snow issue strange for a store specializing in wheelchairs and mobility equipment, and I supposed that they can expect wheelchair users to get stuck in the snow if they don’t take the trouble to remove it. I had to put my foot down and scoot myself forward to get out of this mess. I made it to the door, opened the door (and this was my first encounter, alone with a door), and neglected to look down to see if there was a change in level (an error I was to repeat several times throughout my trip); there was a slight change in level, and I struggled with the door and getting up the change in level, because it required that I both hold the door open, and pop a wheelie at the same time, but I had one hand on the door, and can’t pop a wheelie one-handed. A salesman came running over to hold the door for me. What on earth is a wheelchair store doing with a change of level at the door? I asked the salesman how soon he could put on a pair of new tires, he said he didn’t know, but pointed out a very nice, lived-in looking Quickie that was also in for repair. He said he would go ask about the tires, as he is not sure that they have any. I found that very strange. I wheeled about the room admiring a couple of nice rigid chairs. I pushed them a bit, and they felt a lot lighter than my A4.

The salesman came back a few minutes later saying "This is the only pair if tires we have, let’s see if they fit." (they don’t). As he was examining my current tires for their size, he remarked "Your wheel is going to come off!" I looked down, and sure enough, the wheel is half off, the axle was sticking out, I hadn’t popped the quick release all the way in. I tried to pop it back on, sitting there, and it went in, but I felt like a total idiot! At this point another salesman approached us; he squatted down to my level and looked at my chair critically, he (in contrast to the other guy) looked very much like he knew what he was looking at, and I knew that he was professionally assessing my chair, or my position, or my wheels, or something. He said "Your wheel’s going to come off" and I saw that it still wasn’t right, and I had to put it back in again. He checked to make sure it was on OK this time. Anyway, we determine that they can’t help me, as they didn’t have any tires in stock.

A place called Wheelchair Suppliers has no wheelchair tires??? WTF???

The first salesman followed me outside saying that he would help me get my chair into the car. For some reason, I felt that it was OK for him to help me, where it wasn’t OK for the perfect stranger at Sears to help me. Perhaps it’s just because the guy worked at a wheelchair store. I transferred into the driver’s seat and he took a wheel off, handed it to me, and I put it behind the passenger’s seat, we repeated the process with the other wheel, and then he took the frame and asked me "What do I do with this, put it in the back?" I said, "No, I’ll just put it next to me", and I put it in the passenger’s seat in the front. He was surprised by this "Oh, you just put it there???" I have a moment of doubt, wondering if I’m not supposed to put it there, but I told him that I have a cousin who’s a para and he taught me all the tricks. "Oh, cool, that works" he said, I thanked him, he left. I must admit, my trip to the wheelchair store was a little disappointing. I didn’t get what I needed, and I succeeded in looking like a total clueless newbie. But then, I AM a total clueless newbie!

Finally I realized that I was feeling tired and decided to check into my hotel. It had required a lot of physical effort wheeling around the mall, getting up the ramps, and getting my chair in and out of the car.

Getting in the hotel was a little difficult, their ramp was inconvenient, and the door was very hard to open. But I managed (alone this time!), and checked in without incident. But had trouble with my luggage. I told the receptionist I would need help with a suitcase and he said "No problem." I got the suitcase and a backpack out of the back of the van ok, but couldn’t reach the handle of the hatchback, which was way over my head. I opened it, but then I couldn’t close it! I had to stand up to close it, and I felt like I was cheating. I left the suitcase and backpack by the curb and got back into the car, put the chair into the car, parked, took the chair out of the car, got into the chair, wheeled across the parking lot to my luggage and sat there for a minute, waiting for the guy at reception to come help me with my luggage. He never came, but another hotel guest approached me and asked me if I needed help. I said yes, I did, rather relieved. I told him that I could manage the backpack if he could take the suitcase. I put the backpack on my lap (I had another one on the back of my chair already) and tried to make it up the crappy ramp. I found I was unable to push up the ramp with the backpack, the backpack started falling, and I had to take drastic measures to keep it from falling because my laptop was in it. I let go of one wheel to grab the backpack, but I started sliding backwards, and spinning in the opposite direction because my other hand was on the other wheel, and I ended up doing a 180, facing down the ramp! The guy who was helping me was watching, and I had to admit "Maybe I do need help with my backpack too," so he said "Sure thing" and took that too. Need I say, I felt like an idiot! But this nice man carried my luggage into the hotel and took it all the way to my room for me, and put it in my room. He was very nice, and I thanked him several times, but he said "It’s OK, I would have been sitting alone in my room anyway, I’m happy to help."

The room was kind of accessible. It was off in a corner on it’s own as if they wanted to hide us. The carpet on the floor was hard to wheel on. The bed was too high for transfers (at least for me), and there was a roll-in shower but the bench to sit on in the corner is too small and too far away from the shower head. If you sit on the bench, the water falls about three feet in front of you. There was no way to take a shower!

I tried to connect to the Internet, but the wireless connection gave me fits, and I was getting hungry, so I wheeled across the parking lot to a restaurant that is a favorite of mine. In the process, I encountered several doors and started to get the hang of pushing the door open and pulling myself through with my hands on the door and the door frame. I was getting a little more graceful at it. I wheeled up to the desk where the hostess was standing. She didn’t see me! I just sat there for a minute, waiting for her to notice me, and a waitress said her name…she looked at the waitress, the waitress indicated me with her hand and a raised eyebrow, at which point the hostess jumped and said "Oh, I’m SOOOOOOO sorry!" I said "That’s OK, I’m short, I’m easy to overlook" with a little laugh. She was uncomfortable with that, but smiled, probably because there was no real answer to that comment. She took me to the very nearest table, and tried to seat me in a particular place, the nearest chair at the table, where I’d have my back to the rest of the restaurant and my face to the wall. I told her I wanted to sit on the other side of the table (so I can see) so she removed that chair, and asked me if I could get in there, because the chairs to the next table were in the way. I said sure, but told her "I’ll let you get out of there first," because otherwise, I would have blocked her in. She got out, I shoved aside the chairs, and pulled up to my chosen spot.

My goodness, just getting seated at a restaurant is an adventure!!!!!!!!!

Dinner was good, and there were no real mishaps, aside from the waitress being really smiley and solicitious. I did discover that I needed to put on my wheel locks while eating, because I kept pushing myself backwards. I must admit I got a little rush out of needing to fiddle with my wheelchair in public. I wheeled back across the parking lot, and going down the curb cut my footplate hit the pavement, and I had to stick a foot out to keep from getting pitched forward out of my chair.

Back into my room, my Internet connection still didn’t work. I took the computer to the guy at the front desk to ask for help or advice, and I felt like he was acting weird with me, uncomfortable. For one thing, the desk was very, very high, and when I wheeled up to the desk, I could only see the very top of his head, which made communication a bit awkward. But he tried to help, and I ended up having to go back and forth to the front desk a few times to get info, or pick up a wireless bridge, or change the wireless bridge to a new one, or get the number for tech support, and by the last time I went, the guy had pretty much relaxed in my presence, and treated me in a manner that I felt was more natural and am more used to as a walker. That was cool, to see his attitude change like that. I got my Internet connection going finally and fired off a few emails to Sean, detailing the day’s events.

Later that evening, I went to the grocery store to get a few things. I had to wait a while at the deli counter because the counter was high and the girl behind the counter didn’t see me. She was doing other tasks in the back so I thought I’d wait, I didn’t want to call out and wave my hand and look like an idiot, but I eventually backed up so she could see me better, she finally came over, gave me my salads. I could barely reach to take the tubs from her hands.

Wheeling through the store I noticed different reactions from people, from changing lanes to avoid me completely, to smiling at me for no reason (I smiled back). Checking out, I used my ATM card and I could barely reach the thing to swipe the card and punch the number. The girl had to hold it and tilt it towards me, but I couldn’t really see the keys and had to guess. What a pain.

Driving back to the hotel, I decided to go put some air in my tires at the gas station. The air compressor had a sign saying "for automotive tires only" and that other tires could explode causing death. (!!) I thought to myself, "OK, just a little shot of air" but all I succeed in doing is letting more air OUT of a tire – not what I need at all. So I sat and thought. It was 8:40pm, and Carco was going to close in 20 minutes. I hightailed it to Carco thinking to ask the people in the service area to put air in my tires, but the service area had closed at 5pm. So I found the sports section and the bicycle area. This was a disaster. There were huge crates and boxes of things in front of exactly the things I needed, a manual air pump. Apparently, people weren’t buying bicycle things at this time of year, so they had cluttered up the aisles with other stuff. I couldn’t get anywhere near the air pumps, or reach most of them even if I had been able to wheel right up to the display. I went in search of an employee, and found one who told me "I don’t work in Sports." I had to ask him "Well, can you find me someone who does?" and so he called someone who does work in Sports to meet me in the bicycle area. I sat and waited for over 10 minutes, but no one came. Another shopper had walked past me about three times and finally he aked me if I was waiting for an employee. I said yes, and he answered "They’ll never come, they never do, what do you need?" I told him I needed air in my tires. "Which tires?" he asked. I pointed to my left tire; "This one," I said. His eyes went huge has he realized that I was talking about my wheelchair tires "OH!" he exclaimed. He didn’t offer to help but kind of hovered for a minute, not sure what to do. So I asked him, "Do you think you could help me get a tire pump down?" He said "Sure!", and we went over there, he negotiated the boxes and crates and got down the pump I wanted. I read the package: 60 psi max. That’s wasn’t enough – I needed 100psi. So one by one he got the different kinds of tire pumps down. At first, he looked at them and read them and trie to figure it out by himself, and took forever reading the information, kind of as if I couldn’t read it myself. Finally I asked him "Can I take a look?" and he said "OH, sure, sorry!" and handed it to me. From then on he just handed me the ones I wanted (fast learner ;o) I liked him), allowing me to read the info and make my own decision. Finally we found one that would work, and I thanked him about a zillion times, because he really took a lot of time with me, but he said it was no problem, and wished me a good night. I got the feeling that he had fun helping me and felt good about himself now. :o)

Going to check out, a guy arrived about two seconds before me and got in line. As I approached, he saw me, stopped, backed up, and indicated with his hand that I could go ahead of him. I smiled and said thanks, not really sure whether to refuse or not, but it was late and I was tired, so I took my place in line ahead of him. Checking out I absolutely could not reach the stupid ATM swiper thing at all. As I wheeled up the cashier realized this right away and said "Oh, you’re going to have fun" as I reach up to the swiper. I couldn’t see the buttons at all. I said "That’s not very friendly of them" and she agreed. I put away my ATM card and handed her my credit card, because she could swipe that herself.

Next, I was in need of cash. I was kind of dreading this because getting in and out of the car so much was becoming a huge ordeal. What a pain in the ass! I drove to a bank, it was closed but there was a teenaged boy in there who was cleaning. He totally stopped what was doing to stand there and watch me get out of the car. There was half- frozen slush at the curb cut, and I got stuck again. Someone drove by and slammed on their breaks, apparently going to help me, but I put my foot down and pushed and got myself out of this mess, and succeed in getting money at the ATM machine. On my way back out, I wheeled all the way down to the other end of the strip mall to go down the curb cut on that end, where there was no snow, and wheeled across the parking lot.

I returned to the hotel, did the whole parking/wheelchair assembly rigamarole, and made it back to my room. I tested my Internet connection again, and this time it wouldn’t work — again. I called tech support and they finally determined that since my room was way off in the corner, it was separated from the wireless access point by a machine room and that was causing interferance. He said he would call the front desk and have them assign me a new room. I told him "NO! I can’t change rooms, I’m in the wheelchair accessible room." The tech support guy said "Oh…" A couple seconds of dead silence. "Well then I’m afraid there’s nothing further I can do for you." Needless to say that pissed me off, and I’m afraid I said something stupid…"What, they don’t expect wheelchair users to be smart enough to use computers??" and I slammed down the receiver, angry and frustrated. It’s interesting that I should have that reaction, because obviously, I’m a pretender. But at the same time, at the moment, I was a wheelchair user, and I had no choice but to remain in that room, and was frustrated both for myself and anyone else who may need to use that room.

It just seemed short-sighted of them, for all the rooms in the hotel except one should have free wireless Internet access.

I decided to try the wireless connection in the lobby. Putting my heavy laptop in the backpack hanging on the back of my chair, I somehow lost balance and tumbled over backwards, having put too much weight on the back of the chair while leaning backwards to try to access the backpack. This was actually rather painful, and again…I felt like an idiot, even though there was no one there to see. I tried again, making sure to lean more forward a bit to keep my balance, and got the laptop in the pack and went to try the connection in the lobby. Still no go, so at that point, I gave up, and went to bed. I was exhausted anyway.

Need I even mention how eye-opening this day has been? I can hardly put it into words. I knew it would be, but of course, didn’t know it what way it would be eye-opening.

But there was much, much more to come. Stay tuned for my very eventful Day II!

[tags]Wheelchairs, Pretender, Transabled, BIID, Wannabe[/tags]

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