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Walking
in L.A.:
ONE It always seemed imposing to me, but maybe I was the only one. Right outside the front door of our house, it sat there, a quiet and unassuming barrier: a four-inch stone step. I don't know whether my parents ever thought about removing it, even once they knew I was going to be disabled, but in my early years, it didn't matter. I could always depend on my mother and father to carry me in and out of the house; if they ever complained about shlepping me, I never heard them, but it couldn't have been easy, not once I was past age four or so. At some point in my non-toddling toddler years, they got me my first manual wheelchair, and developed great skill at bumping me up and down that big stone lump. TWO I have shared memories of my Special Ed school in a previous column. In many ways, it was its own world, not run like anywhere else. We weren't grouped by age, or distributed in grades. Instead, each teacher carved out a certain approximate academic level, and students were placed with that teacher based on our cognitive level and academic ability. By age seven or so, I was already placed in the highest class, which meant I would probably stay with that class and that teacher until it was time for me to go to the local Special Ed high school. I didn't mind, because I loved the teacher, as well as the cultural adventures she took us on, but what was contentment to me must have seemed like stagnation to someone, because I was recommended for a pilot mainstreaming program, which would place me at the elementary school mere blocks from my house. I remember being eager, but my parents had qualms, so I had to wait for them to come around. In the meantime I was plenty busy. See, the school in my neighborhood, where my sister was already firmly ensconced in the early grades, was a two-story building, with no elevator. Since this was the Seventies, there were no laws on my side, no established practices to provide better access, so the choice was clear. If I wanted to be mainstreamed, I had to learn to walk. THREE In collaboration with therapists, doctors, teachers, and my family, I learned to walk with forearm crutches over the next couple of years. I remember scurrying up and down the halls of the Special Ed school, surprised at the speed I was able to achieve. I remember being excited and nervous about my new school. But most of what I remember is that Walking Led to Weirdness. It was strange for me to undergo orthopedic surgeries, but they helped my legs work for me and not against me, so I was happy at their outcome. I knew other kids who were being treated as Frankensteinian surgical canvases by other doctors, so I was glad that my orthopedist decided to stop after three procedures. Even though I remember chafing at his arrogance, what I now recognize as his delusions of godhood, my father and I still found ways to tease him. One surgery was performed in two stages, with each leg going under the knife a week apart, so I went into the second surgery with one leg already in a cast. My father and I decided to write a note to the doctor on my cast, in which we cheekily addressed him by his first name and reminded him to wash his hands before working on the other leg. It was good that we could laugh about the surgeries, since in many other ways they marked me as different, especially my last ones, which took place when I was already at my local elementary school. Other kids were out sick or maybe were hospitalized briefly for tonsillectomies, but they rarely had major surgeries. I suppose I was particularly self-conscious about my separateness, not just because of the hospitalizations, but because I was being babysat at school, and I hated it. The school district, even then cravenly hostage to litigation-phobia, decided that if this disabled kid, new to walking and stairs, was going to be in a regular school, his parents would need to sign liability releases (probably not enforceable, but who cared?) and agree to have an aide keep watch over him whenever he was not seated in class. So starting in elementary school, I had babysitters, daytime babysitters, and I was often a very bad baby. Periodically over the next several years, I would yell out "Lawsuit! Lawsuit!" whenever I was perched on the stairs. I guess I resented being supervised and protected, being seen as a problem, or a disaster waiting to happen. I hated being watched in that way. But other kinds of watching during my early walking years were even worse. I don't know how it happened, but somehow I got roped into being on our local United Cerebral Palsy telethon. Since it meant being on a stage and being on TV, I was definitely OK with it. Before I got there, that is. Once I arrived, I was ushered into a line of other kids and told to walk out onto the stage area while the cameras rolled. We started our procession, and even though this was not a beauty pageant, and we were wearing neither ball gowns nor swimsuits, this did not prevent the emcee from singing a hymn to our courage, like an even more deranged Bert Parks: Look at us, we're walking/ and Look at us, we're talking,/ We who never walked or talked before! During this whole parade, the telethon hosts were giving updates: "Jimmy was here on two crutches last year, one crutch this year. Isn't that wonderful?" I hated this, hated walking's symbolic value as a signpost on the road toward cure and normality, hated being watched, unless I could talk or sing or act. If my mouth was moving, my brain was working, my personality was showing, and I was myself. If I was walking, totally mute, part of a twisted parade, I was merely the personification of my disability, nothing more than a pretext for fundraising. I wanted to be more independent, more myself. FOUR I have already mentioned making my transition from crutches and occasionally a manual wheelchair to a power chair; I was in favor of the change, since I wanted to expend energy on school rather than on hauling myself around a large campus. My parents, however, had qualms. They told me that getting the power chair would make me lazy, that relying on it would give me an excuse not to walk anymore. So we struck a deal. I would use the power chair at school, but the minute the bus dropped me off in my driveway, the chair went into the garage until the next morning. I would get my crutches off the chair and walk into the house, either the short way, up a small step from the garage, or the long way, from the garage around to the front of the house and up the big step. Unless I wasn't feeling well, I was not allowed to use any wheelchair inside the house. In retrospect, this arrangement seems almost punitive, but it had a purpose. My parents wanted to make certain I stayed strong and never lost the ability to walk. To them, my being vertically ambulatory meant I would always be able to get around, regardless of the access issues I might face; to them, I think walking symbolized independence, strength, and the fortitude not to let my disability weaken me. A wheelchair was useful only as a backup or for emergencies. If I was healthy, I didn't need a chair; in a way, sitting in one meant surrendering to illness and weakness and fragility, to disability itself. The underlying ideology of all this bothers me a lot now, but back then, I accepted it, because having the electric wheelchair, even on limited terms, was so freeing. I wasn't physically tired at the end of the day, I zipped around in a quick and versatile vehicle, and best of all, I had ditched my babysitters. Between the school district's shortage of funds and the significantly reduced risk of falls and injury, my having an aide was neither justifiable nor necessary. I was on my own, in ways I hadn't been before, and I was about to get proof of how much my life had changed for the better. My work in student government and with the school district had gotten me noticed, and at some point in my senior year, United Cerebral Palsy contacted me about appearing on their national telethon. Remembering the previous schmaltzfest, I was dubious, but I was soon to find out that there was a new sheriff in CP Town, and his name was Ritter. Things would be different this time around. John Ritter's older brother Tom had CP, and their mother had been involved with United Cerebral Palsy for years, so I suppose it was a logical step to ask John and his wife Nancy to be telethon hosts. Right away, they used their familiarity with CP as an astringent, to purge the telethon of its sentimentality. John's brother Tom, who was personable, handsome, and educated, was used on the telethon as a reporter/interviewer; he talked to people living with CP, and showed video clips of their daily lives, clips which were matter-of-fact and not sappy at all. I was asked to be one of the interviewees, and I appeared on the telethon, both live and on film. I felt respected, and I was treated as a person, not as a sweet little object for the crowd to coo at. True, it was still a telethon, but compared to my previous one, it felt like "Nightline." The next year, I went off to college, and that in itself was sufficiently novel that Tom and the telethon people filmed another segment about me. Excitedly, I told the other students in my dorm about it; as in a previous publicity situation, I was trying to impress a girl. Alas, my segment was axed for time, but the girl in question commiserated with me, so that at least was something. The telethon segments helped me experience publicity that was not objectifying or infantilizing, and I was grateful for that attitude, as well as for those who embodied it. My horizons were expanding, and my life was moving forward. FIVE College flew by, and later I found myself in Berkeley, which was and remains Chair Country. For the first time in my life, I was around a large group of people who got around the way I did; being seated atop or inside an electric wheelchair was just as normal for us as automobiles were for those who drove. In fact, I ended up being able to recognize people by their chairs, exactly the same way I used to be able to spot my mother's car from clear down the block. I was at last fully comfortable with my wheelédness, but that comfort had its consequences. After a few years, I simply got out of the habit of walking. I would use my crutches in emergencies, or during my workouts at the campus gym, but being vertical became an afterthought for me. Crutches were no longer a means of ambulation; far more often they were visual obstacles, protruding from the back of my chair and blocking lines of sight for anyone unlucky enough to sit behind me at a movie or a play. In fact, when a friend and I went to hear Thomas Quasthoff's transformative Berkeley recital three years ago, we took the crutches off my chair, and only remembered to recover one of them after the concert. The other vanished, presumably taken by some patron who needed it more than I did (!). I have never bothered to replace it. Indeed, its orphaned sibling remains propped against the wall of my bedroom; I could choose to see its solitary form as a symbol of sadness and loss, like Tiny Tim's little wooden crutch, but I have wallowed in enough sadness over the years that grief over not walking hardly even makes my Bottom Ten. Trips home to Los Angeles, however, were a different matter. As I stopped walking and as my parents grew older, my concerns and priorities shifted. My body could no longer adhere to the old no-chairs-in-the-house regimen, and walking made me more nervous about falling, a fate from which my parents were less and less able to rescue me. After my father died, I persuaded my mother to buy a portable ramp that would at long last leapfrog over the front step. I don't know if the reality of the ramp made her sad, if it caused her to confront and mourn the death of my walking self, but its presence was a great relief to me. Getting around my mother's house in a manual wheelchair felt congruent with the way I lived on my own, and I felt safer. True, I was more "dependent" on the wheelchair, but also less likely to fall and be trapped on the floor. The ramp made our whole family realize that independence was no longer defined in terms of triumphing over my limitations, but was instead a matter of making safer and more reasonable choices, without regard for their emotional ramifications or symbolic value within the ideology of disability. SIX Even with the ramp and the demise of the disability-conquering approach, I still bridled at leaving the Bay Area to visit my family in L.A. While I was fussed over, well entertained, and very well fed, I still viewed my mother's house as a particularly comfy and welcoming jail. Calling up friends I saw only rarely and trying to get them to come over was often a chore, and having my mother drive me everywhere felt like a bad high school flashback. In addition, it was getting more difficult for her to lug my manual wheelchair in and out of her car. All in all, these kinds of issues were a recipe for ongoing conflict and angst. Then it hit me. I had always resisted bringing my electric wheelchair down to L.A. I figured it might make life easier for me, but my mother had no way to transport it. Besides, I had long assumed that the manual chair was easier to deal with, which was shortsighted of me. Because it could fold easily into the trunk of a car, the manual chair was more convenient, but it just created more work for others, since I was no more capable of wheeling myself than of walking. When I decided to travel to L.A. for my 20th high school reunion, I brought my electric wheelchair, and had my mother rent a manual one that she could keep in her car. The mobility I experienced was a revelation, in many ways a reliving of my great burst of independence upon first arriving in Berkeley. Because the reunion was being held in Hollywood, I decided to forego paratransit and get there myself. While the lack of curb cuts made travel somewhat hazardous at first, I easily zipped the six long blocks to the bus stop, and the bus deposited me at my destination, a new shopping center adjacent to the Chinese Theatre. Our class would be taking over one of the center's hip nightclubs for our reunion. I had no idea what to expect when I arrived. As I have written elsewhere, high school was a successful yet unhealthy and unhappy experience for me. I feared the worst: I would have nothing to say to anyone, I'd feel like a loser compared to everyone else with spouses and jobs, and I'd have to lie myself silly, telling people how good they all looked. Happily, things didn't turn out that way. I felt very relaxed, enjoyed catching up with people, and didn't have to lie at all. My classmates looked great, and it seemed like many of them felt great too, older and a bit wiser, yet still young enough to be silly and have fun. I got to see lots of photos of kids, husbands, and wives, and I heard about the many different career paths we had all taken, but I sensed no competitiveness, no outwardly boastful insecurities. As late as a week before the reunion, I was still contemplating not going. I felt that not enough had gone right for me in recent years to warrant a proud and confident appearance there. But I forced down my anxiety, connected with my classmates, and felt rejuvenated. Would I have felt so grown-up and self-assured if I'd had my mother transport me back and forth, using a chair I couldn't pilot independently? Not a chance. By the time I came back up to the Bay Area, I'd used the L.A. subway two or three times and had met a friend for shopping and a somewhat gossipy lunch. It felt very "Sex and the City," Southern California style. But perhaps the biggest impact of the whole trip was on my mother and our relationship. For the first time in years, she barely had to lift a finger to take me anywhere; her shlepping quotient approached zero, which made for much less tension, and a far less confining atmosphere at home. Of course, she couldn't give up worrying entirely, and waited up for me on reunion night, but we made a lot of progress and actually enjoyed each other's company as peers, in a far less dependent relationship. EPILOGUE While my reunion may have been an initial trigger for this column, its themes, and especially my telethon memories, were brought into sharp focus by the untimely death of John Ritter a week before my journey back to Los Angeles began. As I finish this column, I look forward to the weekly airing of "Joan of Arcadia," a new television show featuring a major character who has a disability. Were I in a crabby or protesting mood, I might carp over the fact that the disabled guy is played by a nondisabled actor, but I am less inclined to protest. Why? Because this multidimensional character is being portrayed, warts and all, by Jason Ritter, whose parents John and Nancy hosted the telethons all those years ago. I hope his father is proud of him; I have a sneaking feeling his uncle is too. Jason Ritter's character is a former star athlete who has become a paraplegic in a car accident. While such a narrative arc is light-years away from my own experience, I still appreciate the complex struggle for independence I have seen unfolding gradually each week. If my walks and rolls through Hollywood have taught me anything, they have shown me that the process of defining and expanding my notions of independence is never over, and that my narrow preconceptions can still be exploded by something as simple as riding a new subway or serving as the world's most expensive and overeducated grocery cart, accompanying my mother home from the supermarket on the corner. ©2003 Danny Kodmur
Don't
wait. .
More by Danny Kodmur A
Soul Clothed in Shining Armor~5/00
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BENT: A Journal of CripGay Voices/November 2003 |
