ON GETTING STUCK

A Streetcar Named . . . Frustration

Some disabled people have complicated relationships with their wheelchairs. I've never been tempted to do this, but I've heard of people who've named their chairs. I guess that's not much different from drivers naming their cars, but to me it's always seemed weird, like a reminder of childhood days spent with imaginary friends.

Whether we personify our chairs or not, we all have stories about predicaments they have gotten us into. Breakdowns are so common that they rarely rise to the level of anecdote. In order for us to tell, retell, and embellish our tales, something more has to happen, preferably something outrageous or painful. When I tell my chair stories, I try to make them funny even if they aren't, to forestall pity or melodramatic concern. Here's my favorite:

Several months ago, I needed to travel within San Francisco. I could have used two different modes of transit, but I saw the chance to save time and energy by using only one. I thought I could take a streetcar from a friend's office to his apartment, so I scoured nearby intersections for an accessible platform. I found one, and I remember being pleased with myself; here was further evidence of the ongoing "crip triumphs over annoying mass transit" saga that's so much a part of my life.

If you've read my previous work for BENT, you know I pay grudging respect to the continuing capacity my disability has for smacking me in the head at unexpected moments. This sunny spring afternoon would prove to be quite a smack. Picture me, parked in the middle of the street on the accessible streetcar platform. I have found what I assume is the first accessible stop for this particular streetcar route. Seeing a streetcar approach, I congratulated myself for all the time I was saving.

Imagine my surprise when the car completed its turn ten feet past my location on the platform. I remember thinking, "I guess the driver didn't see me. No big deal. I'll just go to the next platform." So I leave this apparently easily overlooked stop and move to the sidewalk. I drive. I drive. I drive. No platform in sight. I get out my cell phone and call the friend who will be my host for dinner. He asks where I am; I tell him I wish I knew. The only landmarks I can provide are a freeway underpass just ahead, and a perplexing street sign between me and that underpass. The sign tells me that this route is not recommended for bicycles. Since I'm not on a bicycle, I figure I'm in the clear, and my confidence is bolstered by my friend's latest directions.

He tells me that if I follow the sidewalk through the underpass, I am sure to come upon the next accessible streetcar stop. So I proceed, and I emerge from the darkened underpass onto the continuing street. I look up toward the clear blue sky and the beautiful spring sunshine; half a second later, I look straight ahead and realize that my chair and I have driven into deep trouble.

The street I have been following for 45 minutes in search of a streetcar stop has transformed itself for a few blocks into a freeway. Highway signs, multiple lanes of speedily whizzing traffic, no sidewalks, no pedestrians, the Complete Freeway Experience, with an added bonus: oncoming traffic in my lane.

The part of my brain that isn't focused strictly on driving or on panicking registers the presence of drivers headed towards me. Because visibility is good on this bright spring afternoon, they have no problem seeing me. In retrospect, I wonder how many of them called 911 or the Highway Patrol. I wonder what those calls sounded like. How exactly do you report an electric wheelchair driving on the freeway? Whether they were concerned enough to call or not, the other drivers did have the presence of mind to swerve away from me, and I sped away from them, angling for the patch of asphalt which hugged the central median to my left. The median itself was a sort of low concrete wall separating the freeway from [extra points if you guessed this] a set of streetcar tracks for the very line I had been following and hoping to board all afternoon.

After a few minutes of traveling directly alongside me, one of the streetcars stops. The door opens, and as politely as he can, the driver asks me what I am doing on the freeway. I tell him I am looking for the next accessible stop. He tells me I have more freeway to go before arriving there, and that between now and then, I'd be lucky not to get creamed by a speeding car. He and his sole passenger decide to abandon the streetcar, tieing up traffic, in order to retrieve me and my wheelchair. They do this by first lifting me out of my chair, then over the low concrete wall, depositing me finally in a streetcar seat. Once the driver's concerned and incredulous supervisor shows up, the three men manage to haul several hundred pounds of electric wheelchair from the middle of the freeway to the inside of the streetcar.

Crisis averted, all of us on the streetcar relax for a few minutes. Actually, the three men relax, since they've been doing all the work. I'm so relieved that I just keep jabbering away, telling the story of how I ended up on the freeway. I can sense the story coalescing into something larger already; within five minutes of being rescued, I am already wondering whether I should write about this for BENT.

This experience proved instructive. For example, I learned that the route I had traveled was part of the single longest segment between accessible stops in the entire San Francisco transit system, more than two miles. This revelation seemed a thoroughly appropriate pretext for a meeting with transit officials, so I scheduled one, to ensure that my unusual experience would not be repeated. Having the meeting turned out to be stimulating and recreational; what wasn't fun was trying to explain to people how a sane and careful college-educated wheelchair driver ends up on the freeway. I was afraid of sounding stupid, but thankfully, the outrageous access conditions took most of the heat off me. The more I told the story, the less frightening the whole experience became.

Without realizing it, I was crafting a classic type of disability narrative, that of the defenseless and helpless cripple being put in mortal danger. Thankfully, the very absurdity of the situation, along with the way I retold it, gave the tale a distinctly self-mocking flavor. As far as I was concerned, I had done well in an insane situation not of my own making. As long as I was in control of the narrative, I could make sure that tragedy and melodrama were banished from the consciousness of my listeners. My Freeway Adventure was horrible, but it was singular enough that no conclusions about me could possibly be drawn from it.

Light Bulb Moments

I wish I could say that all my "marooned on wheels" stories reflected that much credit and even glamour on me, but truthfully, most of them don't. It has been almost a year since my duel with the freeway, and I've continued to have periodic wheelchair crises, but oddly and shamefully enough, nearly all of them have taken place within the four walls of my own apartment.

Such an unusual confession requires some background. My computer and desk are set up in my extra bedroom. Since that room lacks an overhead light, I have set up a floor lamp in one corner, but the lamp is not easily accessible to me; since I haven't figured out where to move it, and since sitting at my computer in the dark would be foolish, I have come up with what I thought was a nifty solution. My wheelchair sports a powerful electric headlamp, which comes in handy along my neighborhood's dark sidewalks. Let's see . . . Floor lamp and switch, across the room, blocked. Much stronger lamp, six inches away, with switch one inch away. Using the headlight seemed like a no-brainer, but of course that's exactly what it turned out to be.

Several hours of sitting at my computer with my headlight providing illumination can leave me with a fully discharged battery, just the way leaving auto headlights turned on in a parking lot can. So several times in the last few months, I have tried to leave my desk after hours at the computer, only to find that my wheelchair is inoperative. Each time this has happened, I have managed either to get hold of my manual wheelchair or to figure out a way to bring battery charger from bedroom to electric wheelchair.

Now as I mentioned in a previous article, the original advent of my electric wheelchair triggered a steady decline in my walking capability, a downward spiral which has continued. As a result, I rarely walk at all anymore, except in emergencies. Given how difficult walking is now, I should be able to take pride in still being able to move from room to room without benefit of wheelchair or even crutches; after all, such locomotion represents enormous effort and significant accomplishment.

However, I can take no pleasure in these incidents, for two reasons. One, of course, is that claiming credit for wisdom and resourcefulness rings hollow when I know the situation would not have happened if not for my own stupidity. The other is so trivial and yet so monumental that I blush in disclosing it. My apartment has lovely shiny slippery hardwood floors. Visitors love them. I hate them. I hate them because I know they can make me fall; I hate them because I know they pose a threat to me unless I take proper precautions, like keeping my shoes on most of the time. And dear readers, during all of these late-night heroics, I was wearing shoes. Had I been in socks or bare feet, I would have had no way of even standing safely, let alone of navigating from room to room while vertical, skillfully yet tenuously holding on to doors and walls and heavy objects to keep from falling over.

Here's one last story to further underscore my point. I had known for months that one of my wheelchair motors was in its last stage of decline. While I had taken the precaution of ordering a replacement, I had not yet made the trip down to the repair shop to get the new motor installed. One early afternoon a few months ago, I was preparing to take a shower and get dressed. I went into the kitchen for a drink of water, then started maneuvering my wheelchair out of the kitchen toward the bathroom. At that moment, my motor decided to die.

The good news was that while I was stuck, I was stuck in the kitchen, with a phone in easy reach. The bad news was twofold. Because I had been getting ready to shower, I was in bare feet, and because I hadn't been out of bed for more than 90 minutes, I was clad only in a nightshirt.

Because this happened post-freeway, I wasn't worried, just amused and mildly disgusted with myself. I couldn't get to my manual wheelchair, with which I would've been able to shower, dress, and occupy myself while trying to figure out how to get the motor repaired. My next-door neighbors had keys to my place, and they could have easily let themselves in and helped me switch chairs, but none of them were home. I swallowed my pride and put in a call to my dignified elderly landlord. Without explaining too much, I told him I was stuck. In my kitchen. Because he was busy and I didn't feel comfortable telling him to rush over, it was a while before he let himself in to the apartment.

I'm sure he must have been perplexed and alarmed to find his half-naked tenant sitting in a useless electric wheelchair. Kind and practical person that he is, he helped me switch chairs without a hint of either interrogation or reproach. I appreciated his delicacy, and thanks to him, I was able to get dressed and make arrangements to have my electric wheelchair repaired first thing the next morning.

Unburdening myself of my secret disasters is liberating but also risky. If I confess to these lapses in judgment and common sense, am I undermining my competence as an independent person? Do half a dozen screwups mean I am no longer capable of living alone? My family and close friends might say so, especially those already concerned about my loneliness, my isolation, my depression; these challenges notwithstanding, I would still disagree. While the problems I have described may make my life more difficult, I don't think they warrant drastic conclusions. I don't need twenty-four-hour attendant care. I just need to stop being stupid. I don't need a complicated life-safety infrastructure. I just need to break my headlight habit. I'll probably buy a Clapper for the lamp in my computer room. Who knows? Maybe they'll put me in one of their commercials.

A few months ago my sister and I toured an assisted living facility, where some relatives would soon be living. We were both impressed, and my sister went out on a limb, confessing that one of her visions for me was that I might eventually live in such a place. I told her that I didn't think I was old enough yet but that I appreciated her concern. After all, in such a place, I'd have a safety infrastructure and lots of people around me. My family and friends would worry less about me, or would at least try to.

I still think I am fully competent to live on my own. Whether I want to continue doing so is another question. I'd love to live in a house with others, or in an apartment building where people spent time together. Living alone doesn't worry me the way it might worry my loved ones, but it can frustrate me and make me sad. Changing my living situation would be a massive undertaking, not one I feel ready for; yet, my current situation feels wrong somehow.

Maybe my wheelchair is only the most visible and obvious symbol of a life that keeps getting stuck. I clearly need to make some changes. The prospect of doing so intimidates me, but, hell, after the freeway, anything else should be a piece of cake.

©2003 Danny Kodmur

 

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DANNY KODMUR resides, writes, and tries to figure out his life in the Bay Area. Write to him at dkodmur@comcast.net. If he's not stuck in his kitchen again, he'll get back to you.

 

More by Danny Kodmur

A Soul Clothed in Shining Armor~5/00
How Much Does it Matter? Wrestling with the Metaphysics of Disability ~11/00
On Being (Un)Representative ~1/02
Testing My Faith in Romance ~3/02
No Need to Kick My Tires ~5/02
Balcony Scenes with a Twist ~7/02
Productive Confusion ~7/02
The Music and the Mirror ~9/02
The Music and the Mirror:II ~11/02
Life Under the Spotlight: Disability and Depression ~1/03

 

BENT: A Journal of CripGay Voices/March 2003