A BENT GUEST FEATURE
ON THE MOVE AGAIN
Independence and its Cost
By Eleanor Thoe Lisney
From time to time BENT attracts
the interest of readers I like to think of as "friends and family,"
people who find intellectual or emotional resonance here despite
the fact that they are not part of BENT's core constituency.
I hope this piece by Eleanor Lisney reminds readers that we
welcome a multitude of viewpoints from writers of all kinds.
2001, when I first wrote for BENT, I
had moved from France to Austin, Texas to enter graduate school
after leaving a marriage of eighteen years. The transition from
being a full-time mother in Europe to being a single student in
the United States was full of unexpected challenges, both physical
By now I have moved between three continents and four countries.
How ironic that I should be the rolling stone in my family, ironic
because nobody would have envisaged that fate for the girl child
stricken with polio at the age of three in a small Malaysian town.
In Austin I had made some good friends and had begun to appreciate
the city's music scene, but then I got a job offer from Massachusetts
that seemed irresistible. It was time to move again.
Understanding that I would require help finding an accessible apartment,
my new boss drove me around to look at rental properties, giving
me the benefit of her local knowledge. I learned that some apartments
required what seemed like mountains of background information and
had long waiting lists. I did not qualify for Section 8 housing
assistance, which would have entitled me to more affordable rent,
nor did I have a long rental record, since I had to change apartments
three times in my three years in Austin. (As a student, I had to
leave university accommodations as soon as I graduated.) Although
I could present proof of a job offer, I had no paycheck to show.
Despite these obstacles I found a pleasant and totally accessible
apartment at last. Its one drawback is that it takes more than half
my paycheck. The bus does stop at my front door, however, and with
only one transfer I can arrive very near my office. Warned about
snowy winter weather before leaving Austin, I made sure to arrange
for para-transit service. That's my back-up when Massachusetts grows
too cold for me to use public transportation. Unknown to me, my
pass from Austin was only valid for six months, so when it was time
to use it I was told that I had to reapply and get medical confirmation
of my disability! Even when you think you have planned for contingencies,
the rules can change and you find you are compelled to start from
Planning the move took exhaustive research, convincing me that people
with disabilities need to be better organizers than their non-disabled
counterparts. How should I move my belongings? Should I move them
at all or would it be better to buy new things in Worcester? How
could I afford it? My boyfriend (we have broken up since then; long-distance
relationships are difficult to maintain) offered to drive me in
a rented truck, a long and physically tiring journey.
the time I figured the cost of renting the truck, plus the cost
of hotel rooms, gas, and insurance, it seemed more sensible to hire
movers from CitytoCity.com. You pack your possessions in their containersas
many as you requireand
they deliver the containers for you to unpack on your own schedule.
Theoretically, it was good reasoning. I felt fortunate that my friend
took enough time from work to fly with me and unpack my things in
Massachusetts, just as he had packed them for me in Texas. Moving
furniture is not something wheelchair users should attempt.
I was proud of myself. Organized to the smallest detail, I had even
allowed ample time to get used to my new environment before starting
my new job. But things went awry when CitytoCity failed to turn
up at the agreed upon time. It was no simple inconvenience, not
merely a matter of dishes and books and clothes: my motorized wheelchair
and my computer were in those containers. You who use wheelchairs
know how demoralizing it is to be without your own chair, and like
many disabled people I depend on my computer as a vital source of
communication and information.
After a week, when my friend needed to return to Austin, the movers
still had not found my belongings. Responding to my anger, the company
pledged that they would not charge me for the move because of their
mistake, but then reneged at the last minute. They agreed to waive
charges for the last part of the service only (about five percent
of the entire cost) and they did provide movers to get the containers
to my apartment and empty the contents. Without
friends in a strange city I had to meet the physical challenge of
somehow unpacking by myself, arranging furniture, sorting out boxes.
For the three weeks it took to find my "mislaid" belongings I endured
an empty apartmentno bed, no kitchen equipment, nothing but
the clothes in my suitcases. Some things I was forced to replace
during that time, but far worse than the extra expense were the
stress and anxiety of living in such confusion. To cope, I was able
to draw on inner resources. From my practice of Zen meditation I
knew that I could live a minimalist existence if I needed to, and
that is what I did, often concentrating on the beautiful view from
my window in order to calm myself. I suspect that all people with
disabilities develop some form of Zen philosophy to survivewhether
they know it or not.
was six months ago; by now I am well into my seventh month at work.
It is work I enjoy, but I've found that adjusting from student life
to being a full-time wage earner is a bigger challenge than I had
imagined. In addition to all the "normal" things anyone needs to
relearn in a new city, I've had to find my way through the maze
of which places are accessible and which are not; learning the schedules
and complications of public transportation (buses are much more
frequent and frequented in Austin) was especially daunting. All
these things took time and energy.
I love waking up in my apartment and watching the dawn break through
my big window. I loved the crisp autumn days and now I love watching
storms pile snow on my balcony (Worcester had eighteen inches over
one weekend alone). What I do not enjoy is negotiating icy paths
in a snow-laden city. Winter has become something to be endured,
but it is not simply the weather that's challenging. Sometimes the
people seem cold, too.
My boss says that people here believe in the dictum in Robert Frost's
poem that "Good fences make good neighbors." I do like my new colleagues
but not until I moved did I realize just how important my network
of friends had been. The significance of a support system of people
who care about you was brought home to me when I had to undergo
a colonoscopy and was told that I needed to have someone fetch me
from the hospital. Having no one closer, I was forced to ask a colleague.
Luckily he did not mind collecting me at the end of his workday
and dropping me off at home. Certainly I did not anticipate how
much I would be on my own here, how nights yawn long when there
is nobody to share an evening with. Though normally an outgoing
person, I find that I have started to acquire some hermit habits.
Independence, I have learned, comes with a price, one that I am
not certain I can afford to pay. Independence means that people
in my new environment do not know me and would not allow me the
indulgence for mistakes that friends who have shared trials and
triumphs would do without question. You can share aches and pains
with old friends, too; they know your scars and battle wounds, whereas
the new people in your life see the scars without knowing how you
earned them. Starting from the bottom, you must prove yourself anew.
I know that most people, whether disabled or not, have endured at
least some of the trials I have described. But as a person with
a disability I also know that despite legal protections I dare not
claim weakness because of my disability; to do so might make me
seem unfit for my job.
need to see my concerns about work and the satisfactions I derive
from a meaningful profession in a larger frame of reference. To
do that I hope, in time, to discover a group of people that will
function as my substitute family, friends who will allow me to achieve
independence in community while I help them to do the same. The
rigors of community seem a fair price to pay for independence. I
cannot imagine anything else that will ameliorate my sense of isolation.
© 2004 Eleanor
Let us know what
you think of this BENT feature.
Lisney graduated from the University of Texas, Austin, with a
Master of Science in Information Studies. Her specialization is
in information design and she has been working on making web sites
accessible. She lives in Massachusetts.