Monthly Archives: July 2006

Diary Post: My Travels with Charley: Boston or Bust I

My Travels with  Charley
My first purchase was a walking cane.  Next I acquired a used wheelchair, circa 1973 from my neighbor’s trash.  It’s a clunky device, heavy, hard to push, even harder for me to maneuver for autonomous travel.  It’s good for demonstrations when the cops can be expected to be especially brutal as loss or damage would have little significance to me.  Last year I bought a  walker.  It was covered by my health insurance with a hefty $40 co pay bit it generally sells for over $200.  It’s red, has a seat and a basket.   It’s helpful when I have to walk short distances or at events where people mingle, as standing is especially painful for me; more painful than walking.  So when everyone else is standing around talking, I can move from conversation to conversation comfortably.  Not limited to the isolation of a sedentary chair, I can weave between conversation.  And all of these devices help communicate to people what is otherwise invisible; my shakiness on my feet, the tendency to fall, lose equilibrium, the pain and stress of standing.  It helps those around me know to move a bit more slowly, to allow me a bit more space.
Last week I bought charley.  Andy and I had planned a trip to Boston, Western Massachusetts, Vermont and Eastern upper state New York; my first trip outside of California since I became seriously ill.  We spent a lot of time strategizing my mobility through the airport, at events we planned to attend and my negotiation of the city itself.  We looked at renting a mobile wheelchair but that would require someone to push me where I wanted to go, as I am not strong enough to maneuver a manual wheelchair, hence a total loss of agency and autonomy. I decided to finally buy a scooter.   We have been talking of having a fundraiser to raise the cash to buy this significant investment and we probably still will, but my increased incapacity really necessitated this purchase, otherwise I would have been isolated to the hotel for the duration of the stay in Boston and greatly limited in my access throughout the trip.
Charley is red, though she comes with interchangeable panels and can be blue or silver. She is what is called a traveling wheelchair, dismantling into five transportable though rather heavy pieces.

Before even starting the trip we did quite a bit of research on the laws  and airline policies as they pertain to handicapped accessibility for airline travel.  I found out that it is my right to bring my wheelchair onto the plane and store it in the closet and that the chair and its components take priority over all other carry on luggage, even first class.  We also found out that airlines don’t like to have wheelchairs on the plane and prefer to put them in the cargo hold where most disaster stories occur.  If the chair is damaged the airline must replace the chair but only for the original purchase price.  Being a shrewd shopper, I had purchased Charley on sale.  No one in the Boston area sells Charley for less than $600 more than what I paid for her just a week ago.  Had she been damaged I would have had to lose a day of travel, negotiating the city without the assistance of the chair, find  a distributor and lose quite a bit of money replacing her, or be without mobility assistance throughout the trip.  We were determined not to let this happen.  I downloaded the information from the airline’s own web page as well as the information from the U.S. Department of Transportation which regulates air travel for the disabled and highlighted the points that would allow me to assert my right to  keep my legs (Charley) with me throughout the trip.  We also formulated a strategy for advocating for my rights.  We have found that, like all marginalized groups, the disabled are not assumed to be able to speak for ourselves or define our own experience and needs.  Andy, both male and ambulatory, is able to be heard on my behalf much more than if I were to speak for myself.  The daily indignities of self assertion do wear on me and I lose patience easily.  So we agreed that he would do most of the talking.
Since a teenager I traveled independently by train, plane and bus.  When I was 19 I planned and executed a solo bike ride from my family home in Washington D.C. to college in Western Massachusetts, a trip of over 400 miles.  But this trip to Boston took all of my courage and threatened my health and safety in its execution.  Andy needed to handle the negotiations regarding the wheelchair, load and transport all of the luggage and dissemble and reassemble the wheelchair with minimal participation on my part.  The trip alone, starting with a taxi to the airport at 3:30 am (PDT) and arriving at the hotel at 6 pm (EDT) was uncomfortable and difficult.  It was hard to sleep on the plane, though not impossible. I rarely go 12 hours without lying down, even sitting in comfortable chairs can leave me fatigued and in great pain.   When we arrived in Boston we both laughed as I stated without any intended humor; “I’m remarkably okay!”  It would not have been surprising to either of us if the flight had left me incapacitated for days or weeks.
I could not have done the trip alone and this loss of autonomy and agency is very heavy.  I am grateful that Andy neither relishes my dependence nor casts aspersions on it.  His growing clarity, along with my growing disillusionment on the impediments to equality of access for and the daily humiliations towards disabled people has been an interesting journey in itself.  To say that his support has been essential is an understatement.  Even the most seasoned human rights activists seem oblivious to this issue as a human rights issue and I find there are fewer and fewer places I can go without experiencing marginalization and humiliation.  When it gets to be too much I retreat; my isolation complete.  Often he is the only one I feel safe sharing my experiences with.
We are in Boston now.  Andy is a delegate at the AFT convention.  I am a tourist learning to get around with Charley.  Every city has a para transit service for disabled people.  The process of qualifying for the service is lengthy and humiliating, like most social services in our “blame the victim,” “pull yourself up by the bootstraps” “all they want is a handout” society.  This service allows disabled people, for a very small fee, to travel by taxi or wheelchair van, throughout their region.  The trick is that one has to arrange one’s transportation the day before and cannot make any changes or adjustments the day of the trip.  Also, the agency can give one a pick up time of an hour on either side of the requested time.  So that if I need to be at my doctor’s office at 3 pm.  I need to request a 1 pm pick up.  If I request a 2 pm pickup they can give me a 3 pm pick up time and then I’m late for the appointment.  But if I request a 1 pm pick up time, they can give me a 12 pm pick  up time and then I have to wait two hours for my appointment.  The same applies for the return trip.  So it isn’t a service I use often in L.A.  I have much more autonomy and flexibility if I drive myself.  What very few disabled people know, is that reciprocity between cities is very, very easy.  On a whim I called up the Boston para transit program and asked about reciprocity.  I found out that all I had to do was call the L.A. county para transit office and have them fax my documents to the Boston office and I would have virtually free ($1.50 to $3.00 a trip) taxi service throughout Eastern Massachusetts, as long as I booked my travel plans the day before.
We got here too late on the first day for me to arrange transportation, and I am a bit apprehensive about trying pubic transportation with my scooter.  Our hotel is near the airport and there is no way to get to downtown Boston by foot (or scoot) as the only connections are underground expressway tunnels.  So the first day I got to explore Eastern Boston, which I found to be surprisingly beautiful and relatively accessible (I can walk, though not far, and if necessary, climb a few steps, so I have more options than many disabled people.)  Eastern Boston consists of row houses of wood or brick, few chain stores, small bodegas, surprising ethnic diversity, two harbor parks, several large hotels, the airport.   I found two community gardens near the hotel and many private gardens.  Because of rainfall, everything is so green.  I did find that there is a ferry service to downtown Boston within a half mile of the hotel, but I have yet to take it.
Yesterday I was able to get a para transit ride to and from downtown Boston and spent the day in the city.  The scooter is wonderful.  It feels like walking which is how I used to clear my head, get my mind still.  Sedentary meditation only seems to increase my anxiety and disquiet.  It is with autonomous motion that I gain a sense of clarity, place, serenity, connection, purpose.  Driving a car is not the same, but the scooter truly has returned to me, my legs.
Later in the day I met Rachel,  a friend from college.  We haven’t spoken much in the last 24 years and haven’t seen each other since then, but we fell immediately into conversation as if there had not been two decades between our last meeting and dinner last night.  We found a sweet Vietnamese restaurant not far from the hotel where she could get a vegetarian meal and I could get in the front door.  (It should be noted; there were four steps up to the restroom.)
Today I had planned to go to Concord to visit Walden Pond and other sites on Boston’s Literary Trail.  But I was too tired and am spending the day writing, resting and later, getting a much needed massage.  It is very exciting to be here, my first vacation in years.  It is hard not to over do it.  So today I return to the inner journey, visiting my inner landscape.
It has been over 20 years since I have been in an East Coast city.  Born and raised in Philadelphia, this is home.  I appreciate the directness of discourse, which many Southern Californians find offensive, Strangely, I find people here to be more polite, and regarding the disability; more accommodating.  Perhaps it is the L.A. cult of the beautiful, mixed with the new age admonition that bad situations are the result of “bad karma” or a “lack of spirituality.”  The illusion of politeness in L.A. has always been stifling for me. It seems the bigger crime to break the illusion by confronting injustice than the injustice itself.  Now that I have to fight for the most minimal access, is so overwhelmingly oppressive. And instead of receiving the accommodation I need, I often get a lecture on manners, sometimes even from people young enough to be my son or daughter, talking to me as if I were a disobedient small child.  Here in Boston I often don’t have to ask for help, it is extended freely and when I do ask, it is graciously granted.  I may even begin to take my guard down and relax.
Department of Transportation links:_

Dairy Post: the color of despair

I have been very ill for several days now, and one quite close to me is in the hospital and very ill.  (It’s not my story, it’s not mine to tell.) His illness has weighed heavily on me and the stress of his care has impacted my health profoundly.
Huda visited last weekend and yesterday Rheim came by.  They cannot imagine how important their visits are.  Emails from Sonali, Dima and Dorothy and phone conversations with my sister, Mary and Andy broke up the monotony and the drone of my own mind that fills me with bitter thoughts and self deprecation.  Leon and Andy are both away this week.  The isolation is like death.   I watch plants grow.  Time moves that slowly.  My biggest goal is to reach the kitchen and prepare healthy foods.  I have had just enough strength to get to the local farmers’ market and to keep my own meager garden green.
I want to be happy, not happy; content, focused, purposeful.  I wish so much to be part of something greater than myself.  I feel as if I have disappeared.  Everything, everyone  goes on without me.  It is as if I do not exist.  I wish so much to find work that I can do that doesn’t break my body, that provides me with enough sustenance to assure that we have food, shelter, health care; work that also adds to the greater good; the resistance of ordinary seeds, the chorus of broken voices.
It feels as if I am making no progress in my life.  Andy reminds me: I am studying Reiki, my garden grows beautifully.  I have such greater aspirations though.  Essays I have not finished, promises I have not kept, letters I have not written.  I am bursting.  I want to run, paint, write, cook, love, play, collaborate but I can barely lift my head some days.
I am afraid of hope.  It is the most dangerous emotion. I indulge in it only to collapse in what at least to me feels like profound failure.  I thought I would have more control over my own life, my fate, my future; than this.  When met with adversity I used to simply work harder, longer, fiercer.  Today this is not an option. Neither my tenacity nor my resourcefulness seem to be of service either.  I do not know how to get out of this hole. It seems the only tool I have that works is a shovel.
What is the color of despair?  I am tired of telling the same story.  This blog stayed empty for days.  What more is there to say?  If silence is death, and I believe it is, do I have the right to remain mute?  Where are the others who dare to tell the truth from sick beds in a strange society where illness is failure, weakness;  where the victim is blamed for the affliction?
In Los Angeles we do not live in our neighborhoods. We try courageously to maintain community over distance and freeway.  The cost of living forces so many of us away from deep personal connections.  Ambition and responsibility replace community and connection.  A real movement for social justice would combine all that.   We hide in our pair bonds.  There are so many reasons not to trust.  Betrayal is a contact sport played on fields of broken glass.  We smile. Measure each other in outer appearances.  Feed corporate consumerism.  We are afraid to touch.  Mask intimacy in air kisses.
I chose long ago to err on the side of love.  On a good day I live with an open broken heart.  Today I want to bury my heart under the raspberry bush.  Sweet berries protected by heavy thorns.