Category Archives: Boston or Bust

My Travels With Charley: Boston or Bust Part VI

August 14 2006 (14:44:00) US/Pacific

My Travels With Charley: Boston or Bust Part VI
The ride back to Boston: Amherst, Belchertown, Cambridge
We packed our bags the next day for the flight home and headed back to Boston, via Amherst and Belchertown. I wanted to see a little bit more of where I had been, a bit of closure, completion. We spent less than an hour and a half driving through Hampshire College, getting coffee and tea in Amherst in Rao’s Café, which was in the building the Yellow Sun Food Coop had previously inhabited. We tried to find the places I had live in, but only found one building still standing. (One horrid apartment building had graciously given way to time!) The other house, I simply couldn’t find. We drove past U Mass, much smaller than Cornell and stopped in a small shop: the Mercantile, which had been there when I was a student. It sells incense, Indian print bed spreads and natural fabric clothes, as it has for over thirty years. I found a shirt I liked and a few stickers.
Niether Amherst nor Northhampton had changed much.

Where the Yellow Sun Coop used to be ©2006 Emma Rosenthal All Rights Reserved
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One of the homes I lived in. My door was the in the white wing, on the left. A modest two bedroom apartment. ©2006 Emma Rosenthal All Rights Reserved

Amherst, Mass. ©2006 Emma Rosenthal All Rights Reserved
Somehow Brattleboro, Ithaca, Amherst and Northhampton have managed to keep the large chain stores out of their downtown areas. An occasional Starbucks or Subway, but no Gap, Victoria Secrets, etc. as one finds in Old Town Pasadena or on Santa Monica’s Third Street Promenade, where trendiness places rents out of reach of smaller, more original shops. Hadley, the town between Amherst and Northhampton is more built up, with more shops, and some of the chains. It now has a Whole Foods and a Trader Joes.

The Connecticut River, on the bridge on Route 9, Between Northhampton and Amherst. _©2006 Emma Rosenthal All Rights Reserved
We took back roads up to the 2 Turnpike.

The ride back ©2006 Emma Rosenthal All Rights Reserved

Self portrait ©2006 Emma Rosenthal All Rights Reserved
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graffiti, Revere, Mass ©2006 Emma Rosenthal All Rights Reserved

Arrest, Revere, Mass ©2006 Emma Rosenthal All Rights Reserved
We arrived at The Roadway Inn in Revere, to find that none of the rooms were remotely handicapped accessible. At one entrance, the door to the hotel is at ground level, but opens up to a stairway with the first floor, half a floor below street level and the second floor half a level above. The other entrance had a flight of stairs to the door of the hotel that leads to the stairway. There was no handicapped parking I don’t know how this is remotely legal. A simple renovation of the back entrance could have allowed access to the basement first floor. Or by putting the office on the first floor, and eliminating one room on that floor, making the office (on the second floor) into a room, the entire first floor would have been accessible with at most the loss of one hotel room. We had a 6:45 am flight. It was 7 pm. We needed to finalized repacking, buy a few things for the trip home, eat dinner, sleep a few hours, return the rental car and be at the airport 2 hours before our flight. Andy checked us in and asked about accessibility. We weren’t offered any help or any satisfactory response to the question. Andy brought all of the packages downstairs and I wheeled them into the room. _We were exhausted and had to get up at 3:30 to return the rental car and catch a 6:45 flight. We had our only real fight of the whole trip that night. It lasted about 5 minutes and blew over like a New England summer thunder storm. It took a bit longer for us to regroup from it and for all wounds to heal but otherwise we were so cohesive and connected throughout the trip. We both have a silly and weird, uninhibited sense of humor; we’re very playful together. We made decisions together well, shared resources. After two years together, this was the most time we had spent together. It was strange coming back to our separate homes, divided by 32 miles of some of Los Angeles’ slowest freeway traffic. This is a real challenge. It will probably be another year before either or both of us can move so that we can live our daily lives together beyond the reach of cell phone and email.

Dinner in Cambridge. Photo by Andy Griggs ©2006 All Rights Reserved

In the airport in Boston Photo by Andy Griggs ©2006 All Rights Reserved
The flight back was a bit distressing. When going though security, wheelchair passengers are separated from their carry on baggage while they and their chairs are examined. Andy watched my things, but as I was given no other option, I don’t know how I would have been accommodated as I had to leave computer, purse, wheel chair charger, film, camera, keys, etc. to go through the conveyor belt, while I delivered my chair to a separate examination area.
While on the East Coast I experienced almost none of the humiliations and indignities that are part of daily life in Los Angeles. Whether I was shopping in high end stores or local mom and pop establishments, accessing restaurants or hotel lobbies, everyone was very supportive and helpful. On the few occasions where I needed to assert my rights, I wasn’t given a condescending lecture on manners. Instead my needs were addressed.
One of the few exceptions to this experience occurred on the flight home. When we got to the ticket counter one of stewardesses took one look at my scooter and gave the haughtiest look. I wouldn’t say that she gave me the look, as she never looked me in the face the entire flight. She gave Charley “the look.” The airline would not let me have my scooter on the plane with me, a decision of the captain who didn’t even look at the wheelchair. They claimed it wasn’t a wheelchair, We explained that it was. They claimed that the on flight regulations were for folding wheelchairs. We explained that the scooter was a folding wheelchair. They claimed that the regulations only pertained to manual wheelchairs. We showed them where policy clearly allowed for electric wheelchairs. Finally they claimed it weighed too much. We explained that it hadn’t weighed too much on the flight into Boston. (It’s not like Charley gained weight!!!) We insisted on talking to the “Complaint Resolutions Officer.” I took down everyone’s name and wrote down every comment they made. They spent quite a bit of time addressing the issues we presented. In the end, Charley had to go into the hold, but the CRO oversaw the process, contacted Los Angeles and gave Charley extra attention. They all but violating the DOT regulations for air travel rights of disabled passengers, but accommodating me enough to protect themselves from future litigation. While airlines want you to check your chair in baggage claim and submit to being wheeled around in a manual chair, pushed by an airline employee, if they insist on putting the chair in cargo, you still have the right to use your own chair to board, then they have to take the chair and put in in cargo and they have to return it to you at your destination. If there’s a stop over, they also have to bring you the chair between flights. But they really don’t like to do this. When we arrived in Los Angeles they told me I had to walk from the plane to the ticket counter to get my chair. Which I refused to do. They offered to have me pushed by one of their employees in one of their manual wheelchairs. I again refused and demanded that they bring me own chair, as was my undeniable right. And reluctantly they did comply.
We came home to one sick cat, (Andy’s,) an overgrown and abundant garden, a welcoming teenager (Leon), a pile of mail and all the work we had put aside while driving through the back country of New England and New York.
Charley is an amazing addition to my life. Saturday I was able to particpate in a demonstration, and even go on the march!!!! I hadn’t done that in quite some time. John Parker, the event organizer asked both Andy and me to speak at the rally. So much I miss when stuck in bed or restricted to the limits of my own body. This chair has legs!
A week after we returned from our trip, Andy left for a teaching program in Williamsburg. I am resting, writing, raising a child into a man and tending to my garden and my health. Andy’s cat, Mao, is staying with me while I force feed her antibiotics. Her introduction to my cat (Manchitas—I didn’t name her!) and dog, Sally, were relatively uneventful. Sally likes to play, Manchitas is a bit apprehensive about ceding her primadonna status, and occasionally emits a primal distress sound. Mao just ignores everyone or hisses from time to time.
Last Monday I went into Pasadena for acupuncture, a chiropractic treatment, therapy and then tea with Sonali. Saturday I went to the demonstration with Leon and Charley (more on that in another post!) I have been writing more. One can live a life or document living a life. It can be very hard to find time for both. Andy is gone at a teaching conference for ten days. I have much writing to do, work to look for, life to organize. We then go to La Quinta for the UTLA Leadership Conference. I am very apprehensive about this gathering because of problems within the Committee (more on that as well!) I called the hotel to find out about accessibility. I am so tired of surprises! After La Quinta, I will be staying on in Palm Springs to spend a few days alone; writing and meditating. Andy will stay with Leon and get his classroom ready for the next school year.

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My Travels with Charley: Boston or Bust Part V

My Travels with Charley: Boston or Bust Part V
Delhi, Bovina and Woodstock
The nearest town to Bovina, is Delhi, N.Y. which we found easily and then Bovina Center, both rather pristine and relatively unmalled.  (Delhi has a Rite Aid and a McDonalds outside the main part of town, and a new supermarket in town, but aside from that, it looked very much the same as it had 40 (40!!!) years ago.  There was a sushi restaurant and a pagan new age crystal store which were new, The five and dime where we bought penny candy and balsa wood, rubber band toy airplanes was gone.  The hardware store was still there.

A rainy day in Delhi, my sister, my brother and me, circa 1965_photo by Al Loeb @ 2006 All Rights Reserved
Bovina Center was untouched, including Russell’s general store, which I used to ride my bike to.  It was about three miles from the farm, and I tried to remember my way back, but couldn’t.

Russells General Store Circa 1968 Photo by Al Loeb_©2006 all rights reserved

Emma in front of Russels General Store 2006. Photo by Andy Griggs @2006 All rights reserved

Russells through the window ©2006 Emma Rosenthal All Rights Reserved
The resort, known as Red Pine Farm, was also a dairy farm.  It was essentially a bed and breakfast, lunch and dinner.  Families would rent out one or two rooms for a week or two and spend time, up from the city, resting, swimming, hiking, collecting berries, catching tadpoles, frogs and salamanders in the pond, building dams in the stream with the slate rocks that cover the region (glacial debris) tagging monarch butterflies, going on hay rides, visiting Cooperstown’s Farm Museum or the Baseball Hall of Fame, visiting maple sugar farms or watching the cows get milked.  It was an amazing place, not a corporate vacation, but a small family business with soul and heart. The first year we went, several families were there from New York.  They had children the same ages as my siblings and me, and my parents are still friends with them to this day.  We vacationed with them every summer.  Down the road from the farm was a small. one room school house, no longer in use, always locked, but well maintained, and a small creek that was the very beginning of the Delaware River.  It wasn’t until I realized that we would be near enough to visit and perhaps find this farm that I understood how important it had been to me; more important than visiting college haunts, maybe even more important that the home I grew up in.
We had gone to the farm every August, driving for five hours from Philadelphia, our bikes strapped to the roof of the car,  until the Linggs, who owned it, sold it in the late sixties, to of all people; Bob Denver (aka Gilligan of Gilligan’s Island.)  My parents stayed in touch with the Lingg daughter, Joanie for many years.
We spent about an hour trying to find the farm, but I had forgotten the way and didn’t have an address.  I almost gave up, and Andy, with hours of driving ahead of us, was so patient.  Finally we asked a local farmer if she knew where the farm was, that it had been the Lingg farm also known as Red Pine Farm and then Bob Denver’s farm.  She gave us directions, and ten minutes later I was standing on the road in front of the large farm house.  It was now the Shuman farm; still had dairy cows.  I pointed to the room we had stayed in, the garage we had practiced plays in, the pool, the pond and the building where the dining hall had been.

Red Pine Farm circa 1967 Photo by Al Loeb ©2006 All Rights Reserved (The view from up on the mountain, taken during a hike, collecting berries.)

Shuman Farm 2006 Taken from the road.  ©2006 Emma Rosenthal All Rights Reserved

©2006 Emma Rosenthal All Rights Reserved

Shuman Farm 2006   ©2006 Emma Rosenthal All Rights Reserved

The road to the milking barn circa 1967.  Photo by Al Loeb ©2006 All Rights Reserved_My sister, my mother, me and by brother

The road to the milking barn ©2006 Emma Rosenthal All Rights Reserved

The Barn 2006 (As seen from the house.) ©2006 Emma Rosenthal All Rights Reserved
I took pictures, then we went down the road and found the school house, still locked, still maintained. the little Delaware and the barn full of cows.

The Old School House ©2006 Emma Rosenthal All Rights Reserved

The Old School House ©2006 Emma Rosenthal All Rights Reserved

The Old School House ©2006 Emma Rosenthal All Rights Reserved

…..
         
The Little Delaware ©2006 Emma Rosenthal All Rights Reserved
Two roles of film later, we left to get back on the road.  We had dinner in Woodstock and arrived in Chicopee late, crashing in a Motel 6 outside of a truck stop and a fifties diner.

My Travels with Charley: Boston or Bust Part IV

Albany and Ithaca
We had planned, having missed one day in Amherst so that I could go to the doctor in Brattleboro, to buzz Amherst on the way to Ithaca, via Albany, but I was pretty wiped out from the day before and we decided to rest all day, pack and drive through Burlington into New York.  We took route 9 through miles of Vermont farmland and small towns; towns without Starbucks, the Gap, Walmart, McDonalds.  We did pass a lot of CVS, Rite Aids and Walgreens, but for the most part, Vermont, Upper State New York and rural Massachusetts are much more pristine than the West Coast.  Huge stretches of forest and farmland remain relatively untouched by large corporations and chain stores.  (Actually even East Boston was surprisingly unmalled.)   We traveled from Marlboro to Albany and had dinner with activist Naomi Jaffe (The Weather Underground)  who I also have worked with on line.  Her wisdom and clarity as an activist is so refreshing and inspiring.  Her understanding of political complexities, resounding.  It was wonderful to finally sit with her.  I had seen her interview on the film and had communicated with her on line, so meeting her brought with it a real sense of familiarity.   We talked about the “lesson of the sixties.” I was sitting with two veterans of SDS, after all.  (Born in 1959, I was still a child through those years.) Naomi identified the lesson of the sixties “That you can win!”  “That the Vietcong won!  They defeated the United States, the largest Imperialist force in the World.”  We also talked about disability rights,  and the reluctance of many human rights groups to see this issue as integral to the overall issues of social justice and what it takes to get this issue front and center.  We also discussed teaching methodology; the difference between knowing a subject and teaching one, and the praxis of radical pedagogy as we ushered in the ghost of Paolo Freire.  While I have written to Naomi for years and have read her input on important issues,  and watched her interview in the film The Weather Underground, it was even more clear in talking to her, how well read,  well versed and dedicated she is in political struggle, theory and application.

Naomi Jaffe  ©2006 Emma Rosenthal All Rights Reserved
The next day we traveled to Ithaca, driving slowly though miles of countryside of upper state New York. We had decided to stay at a Bed and Breakfast in Ithaca so that I would have a nice place to rest if I wasn’t feeling well, while Andy met with old friends.   I was terribly disappointed in my weakened state, my disability and the fact that I had not been able to enjoy Amherst/Northhampton the way I had hoped.  Nonetheless, most of the day I felt pretty good.  As we entered New York we passed Cherry Valley, where my family had gone camping when I was a child and where we found fossils in slate formations, remnants of when what is now the East Coast was ocean before being thrust thousands of miles skyward to form the mountains that parallel the Atlantic Ocean; an event that took place over 200 million years ago.  As we were going through Cooperstown I realized that I had vacationed at a farm about 40 miles away, every summer during my childhood.  We decided not to look for the farm on this stretch of the trip, to try to find it on the way back to Boston.  It was pouring rain, and getting late.  As it was, we didn’t arrive in Ithaca until early evening and barely made it to a restaurant in time for dinner.  (Everything closes at 9 pm there. It’s worse than Los Angeles!) We drove around town, and the University, which is huge. We drove past the gorges that run dramatically right though the campus.  We hoped to spend some time the next day walking around.  Campus would have been difficult on a scooter, as many places are very steep.  Downtown Ithaca is in a valley and would have been much easier to navigate.  We ate dinner at the renowned Moosewood Restaurant. The food was wonderful, but the handicapped entrance was around the back, Access to the patio was through the front.  To sit on the patio would have made the bathrooms inaccessible to anyone in a wheelchair, unless one wheeled all the way around the block.
I had been pretty strong when I got out of the car, but as we were leaving the restaurant, the legs that brought me in the front door, let me know that getting back to the car and from the car to the bed would not be as easy as the previous 300 miles had been.
The next day I would have liked to have walked around Ithaca and visited with the people from Andy’s college days, but I was just too sick.  We had traveled the entire day before and I needed to spend much of the day sleeping.  We ate a wonderful breakfast of blueberries, muffins and fritatta provided by the B and B (Bullfrog Pong in Newfield N.Y, just out of Ithaca)  and I ate a lunch of feta cheese and blue berries I had carried in a cooler, along with the leftovers from the night before.  Andy brought me a Vietnamese noodle dish for dinner before heading out again to have dinner with friends.
Though perfect for me, because I am ambulatory, The Bullfrog Pond B and B is not ADA accessible, a small lip to the front door would make passage with most wheelchairs difficult and help would be required, and the furniture in the bedroom as well as the positioning of the bathroom would be difficult, though not impossible.  The spacing of furniture within the house itself; the living room and dining area were, on the other hand, very accommodating.
   
Bullfrog Pond B and B  Newfield, N.Y. (just outside of Ithaca.) _ ©2006 Emma Rosenthal All Rights Reserved
We left Ithaca the next day after viewing the amazing gorges that cut right though the University, and visiting Buttermilk Falls, in one of the nearby state parks.  Andy showed me from the car, key places on campus, where he lived, the different academic buildings and sixties Cornell history. Then we headed out to find the farm that was somewhere in Bovina, New York.
  
Newfield Covered Bridge, Newfield N.Y. ©2006 Emma Rosenthal All Rights Reserved

Buttermilk Falls ©2006 Emma Rosenthal All Rights Reserved

One of the gorges on the campus of Cornell University  ©2006 Emma Rosenthal All Rights Reserved

My Travels with Charley: Boston or Bust Part III

New England: Vermont and Massachusetts
Andy and I had an amazing trip.  This was the first vacation I had taken in a very long time and my first trip back East in over a quarter century.  Boston was amazing. Getting around on Charley made such a difference.   I had dinner with an old friend (Rachel) from college who was now living and working in Boston.  We were in Boston while Andy attended the AFT Convention as a delegate.  I did attend the forum on Palestine and Lebanon as well as Jonathan Kozol’s speech, both sponsored by the newly formed Peace and Justice caucus which Andy co-chairs with Nancy Romer. The event on Palestine was organized by Stanley Heller who I have known from Palestine support work, on line.  It was good to finally match a face to a name, and attend an event he produced. After Boston we stayed with Nancy and her husband Lou (of the Killer Coke campaign) and their rather enthusiastic dog, Abby, in Marlboro Vermont for a few days, a stop in Albany, a bed and breakfast in Ithaca, New York and then returned to Boston via Chicopee, Massachusetts.
   
-Jonathan Kozol at the AFT Convention.  ©2006 Emma Rosenthal All rights reserved.
  
Andy Griggs (right) with Jonathan Kozol.  Stanley Heller  ©2006 Emma Rosenthal All Rights Reserved
Our first day in Vermont, we rested and did laundry.  We went into Brattleboro and had dinner with Lou and Nancy on the terrace of a restaurant, overlooking the Connecticut River, a quick visit to the Brattleboro Food Coop for staples and the ride back to Marlboro, through the woods of Vermont. The second day in Vermont I woke up with a bad cold, probably from a dirty swimming pool at the hotel in Boston, We had planned to go to Amhert/Northhampton for the day, but opting instead to go into Brattleboro for cough syrup, echinacea a free clinic, acupuncture and to rest.   I started everyday with reiki meditation and yoga on a deck facing the Green Mountains, overlooking a beaver dam.  Brattleboro was pretty inaccessible as most of the stores have one step from the street into the shops, making use of a scooter rather difficult.  Such a small adjustment could have allowed full participation and autonomy to disabled members of the community.  So, between my lack of health and lack of access, we limited our tour of downtown Brattleboro.
 
Nancy and Lou’s home in Marboro ©2006 Emma Rosenthal All rights reserved.

Andy with Abby  ©2006 Emma Rosenthal All rights reserved.
In Vermont we did stop in the Spiral Shop; which is on Route 9 between Brattleboro and Nancy and Lou’s home.  Every time we passed it we asked each other: “What’s a Spiral Shop?”  Despite my meager strength, on one trip from town to  home, we pulled over to explore.  I’m so glad we did.  The Spiral Shop is an amazing combination of a stained glass and ornaments shop surrounded by creative gardens, woods and pond, with innovative and unique sculptures. Nothing goes unused.  Old bicycles and medicine cabinets (with mirrors) hang from trees.  Old tools, bottles, broken items of all types are spaced incongruously.  It shouldn’t work, but it does: magically.  It is the creative labor of love of artist Harold Makepiece whose failing health may bring about the closure of this amazing space.

The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved

The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved

The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved

The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved

The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved


The Spiral Shop ©2006 Emma Rosenthal All Rights Reserved

<> We had decided to visit our college towns together.  I had gone to school in Amherst (Hampshire College and U Mass) and Andy had attended  Cornell. Initially our plans included going to Northhanpton and Amherst (I had lived in both towns) on two days during our stay in Vermont.  Marlboro is only 40 miles north of central Massachusetts. We did go to Northhampton, with a brief stop in Amherst one day.  Many of the shops in Northhampton were not accessible, requiring one step to enter.  I would have had to leave my scooter outside or walk.  I had fashioned a lock out of two bicycle cable locks, but to actually use it to shop casually would have been difficult.  We did a bit of shopping in the more accessible stores, but we had forgotten to recharge the battery the night before and it ran out of electricity so we needed to put it in the car and continue the rest of the day on foot.    We spent some time in the Smith College Library, my favorite of the five college libraries in the area, ate lunch at Paul and Elizabeth’s (a wonderful healthy restaurant,) in addition to the shopping.   We picked up some groceries in Hadley and had dinner in Amherst.  The shops in Amherst were generally more accessible, but without the use of my scooter I was limited in my mobility.  While Andy participated in a conference call, I went over to Food for Thought, the leftist bookstore that I had shopped in many times when I had lived in the area.
<> 

<>
Images of Northhampton, Massachusetts.  Top left: the view of the town from Smith College._Top right: Smith College Library. Middle Left: Smith College Library.  Middle Right and bottom: My residence in NorthHampton.  ©2006 Emma Rosenthal All Rights Reserved.
I was exhausted and my cold was getting worse so the next day we rested before heading out that afternoon for Albany and Ithaca.  From then on, most of my sight seeing was from the seat of the car.  Between my cold and the fibromyalgia, I wasn’t strong enough to ride Charley or battle the heat.

<> The view from the car.  Wilmington VT. ©2006 Emma Rosenthal All Rights Reserved

My Travels With Charley: Boston or Bust II

<>We’re home, and over the next few days I’ll be posting on the various legs (wheels?) of our trip! Here are some photos to pass the time, that accompany the previous post.
As always, all images are ©2006 Emma Rosenthal All Rights Reserved
East Boston:

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

East Boston 2006 ©2006 Emma Rosenthal all rights reserved

 Downtown Boston

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved
Boston Public Garden


©2006 All rights reserved

©2006 All rights reserved

©2006 All rights reserved

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.
Exhale!
Department of Transportation links:_http://airconsumer.ost.dot.gov/hotline.htm_http://airconsumer.ost.dot.gov/publications/disabled.htm_http://airconsumer.ost.dot.gov/publications/horizons.htm_http://airconsumer.ost.dot.gov/pubs.htm