Meditations on Mobility
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.
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.
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.
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.
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
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.
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.
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
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.
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
Let us know what you think
of this BENT feature.
DANNY KODMUR lives, writes, and tries to figure
his life out in the San Francisco Bay Area. Write him with comments,
anecdotes, or crutch sightings at firstname.lastname@example.org.
His work is featured in
"Queer Crips: Disabled Gay Men and Their Stories," edited
by Bob Guter and John R. Killacky.
by Danny Kodmur
Soul Clothed in Shining Armor~5/00
Much Does it Matter? Wrestling with the Metaphysics of Disability
On Being (Un)Representative
Testing My Faith in Romance
No Need to Kick My Tires
Balcony Scenes with a
The Music and the Mirror
The Music and the
Under the Spotlight: Disability and Depression ~1/03
On Getting Stuck ~3/03
Of Cities and Closets ~5/03
So How Old Are You, Anyway? ~7/03
Socializing and Sobriety ~9/03