Today I was looking at some old stuff after getting an e-mail from Robert Feinstein whom I used to chat with when I was in the US. I have the honour of being the only non gay contributor in a the only gay disabled online magazine (now sadly defunct) - Bent: a Journal of Cripgay voices when Bob Guter was the editor, he added me to the band of ‘friends and family’ he said,
Because I really felt rootless in the US. And I think I captured the feeling of a traveller. not a tourist but a sojourner. And the peculiar set of difficulties one has when one is disabled – everybody has adjustment problems whenone has to moved but I think its certainly different as a disabled person. I do not think the Bent folks will be annoyed if I reproduce it here in full:
In 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 and emotional.
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 square one.
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.
By 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 containers—as many as you require—and 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 apartment—no 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 survive—whether they know it or not.
That 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.
I 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.
BENT: A Journal of CripGay Voices/January 2004
