Monthly Archives: May 2007

“We Can’t Find Your Wheelchair. Would You Please Stand Up and Come With Me.”

The Ride Back From Portland!
The flight back from Portland involved a connecting flight in San Francisco, with very little time between landing and take off, so we called the airline and, breaking from my usual practice of riding my scooter to the plane, having them store it on the in the cargo hold, and bring it up to the plane upon arrival, we decided, in order to meet the connecting flight, to opt for the airline to provide a manual wheelchair, pushed by an airline employee.  This would allow us to get to the next plane and would allow them to load the wheelchair along with the rest of our luggage, into the cargo hold of that connecting flight.
In San Francisco, the airport employee who pushed the chair never introduced himself, never called me by my name, pushed me over obstacles, and refused to slow down and walk with Andy, until I insisted four times.  This was just a job. I was a piece of luggage to be moved from one plane to the next.  But Andy and I barely had time to make the connection.  The usual 40 minute wait for the scooter would have meant that we would have missed our flight.
When we got to Los Angeles we moved to the front of the plane and waited in the empty aircraft (along with the flight crew) for my scooter to arrive.  Airport personnel reassured us that it would be brought up shortly.  Finally a man from customer relations came aboard.  It was time to board passengers for the return flight to San Francisco and they hadn’t located my wheelchair, would I please stand up and come with him and wait for my chair.  He made this request without providing a chair; wheeled or otherwise and without determining if I could actually stand and come with him.  I refused to get up, waiting in business class, as it was the front of the plane, until they could provide me with a chair.  We exchanged loud words.  Then he walked away, ostensibly to get a chair for me.  The passengers for the outbound flight began to board.
It wasn’t like the airline didn’t know I was coming; that they either had to bring me my wheelchair or at the very least, provide me with one of theirs.  This information was supposed to have been relayed to Los Angeles from Portland.  Andy had already left the plane to make room for the oncoming passengers.  I began to worry that in his spite, the man from customer relations may have simply left me there to either get off the plane on my own or go on to its next destination.  No one would tell me anything.
Now, yes, I can walk.  How far, varies.  Some days a few steps are a challenge. Standing is harder than walking. A large airport like LAX is overwhelming. Asking me to stand and wait assumes a capability not implied by the need for the scooter.
Finally an alternate wheelchair arrived.  The man pushing the chair introduced himself as “Daniel” and assured me that he would take good care of me.  He was very kind and extremely understanding of my frustration and the humiliating nature of the situation. Driving my own scooter is very different from being wheeled around in an old, cheap, clunky wheelchair by a stranger who has no specific training.   “Daniel’s” kindness, not withstanding, the right to my own agency, my own ability to determine where I go, how fast and when, has to be the foundation of self-determination. It is the logical rejection of the dehumanizing medical model of disability that imposes upon us the role of silent, passive patients, as opposed to the social justice model of engaged, empowered, dignity.
When we got from the plane to the waiting area, the customer service representative who had instructed me to walk (HALLELUIA IT’S A MIRACLE!)  was talking with another customer.  “Daniel” parked me in a corner away from the service desk.  I asked another employee what the representative’s name was. She identified him as “Omar” which I recorded in a notebook.  I asked to speak with his supervisor but was told that he was the supervisor.  I continued to complain about the hideously insulting and humiliating request that I get up and walk.  Andy went over to the service desk to get more information.  I remained parked in a corner.  I asked “Daniel” to move me, which he did, but not over to the service desk which was between a maze of chairs and cordons.   This left me unable to assert my own needs; forcing me to leave the matter to Andy and the airline.
At some point, while we were waiting, I needed to use the restroom.  I had to ask  “Daniel,” a man I didn’t know, to take me. I am able to walk into the restroom by myself, but I am not strong enough to maneuver a manual wheelchair,  so I needed  him to take me to the entry of the women’s room.   These attendants are not medical personnel, there is no expectation of confidentiality. Even asking to be brought to the door of the bathroom is an unacceptable violation of privacy and dignity and what happens to passengers unable to walk at all?
After repeated requests for his card and even more waiting while “Omar” attended to other customers, he finally walked over to me, provided me his name, handwritten on a paper luggage tag.   I repeated my outrage at his suggestion that I get up and walk and my anxiety about the location of my scooter. He apologized to me and assured me that he would give my situation the attention it deserved.
He began to try to look for a solution, at one point offering to pay for a rental.  But that’s not a simple matter.  With my limited health, finding and returning the rental would take up the better part of two days.  Los Angeles is a large city.  It’s not like they sell scooters on every street corner. It’s not a lost bag; requiring a trip to the nearest department store on the off chance that I hadn’t packed an extra change of clothes in my carry on.  This was my mobility device. Had this happened at the beginning of a weekend trip, much of the trip would have been wasted and the return home, exhausting and difficult.  More than anything, I need the scooter when I travel.
At least we were home in Los Angeles.  I can organize my life without the scooter, if need be, though I would need it by Wednesday. That was the day the carpenter, was coming to build a ramp and I would need to have MY scooter to make sure the ramp and the scooter worked together. Where does one rent a scooter to one’s own specifications?  (Something to find out, both at home and in the event of similar circumstances; for any destination, before making the trip.) Some wheelchairs are custom made.  On the flight to Portland a pilot, traveling with his family, including his disabled son, received their very expensive wheelchair with pieces missing.  He explained that they had just paid $5000 to have the chair reconfigured for their son’s growing body; that is, just the reconfiguration, not the chair itself, cost $5000.  Why then do airlines insist on separating people from these expensive and essential pieces of durable medical equipment and put them in the hands of people with no medical background?
“Omar” assured us that he would get my scooter to us that night if he had to deliver it himself.  He gave Andy his cell phone number and repeated the apology to me.  I don’t know if he became more conciliatory because I took out a notebook or because he could finally focus on the situation, but he did seem sincere and I doubt he will ask another person with a disability to stand up!  He seemed truly mortified by his own words, in that way that any of us with conscience are when our subliminal and learned bigotries and assumptions come to the surface in brazen contradiction to our intentions and values.
While we were waiting, I needed to use the restroom.  I had to ask “Daniel” to take me.  Most of the time I am able to walk into the restroom by myself, sometimes with the help of a cane.  But even asking to be brought to the door of the restroom is an unacceptable violation of my privacy and dignity.
After waiting over an hour, Andy and I went downstairs to baggage claim on “Omar’s suggestion,  to file a missing baggage report.  The two women there were very helpful and apologetic.  “Daniel” went to find our luggage.  He returned with Andy’s bags, but mine was still missing.  He went to look again and came back, but with the wrong one.  At that point, with the help of my cane, I went back into the baggage storage area and found the suitcase.
No one was sure where the scooter was, but Andy and I figure that they tried to bring it to the gate in San Francisco when we changed flights, instead of putting it in the cargo with the rest of the luggage.
Finally we were told that the scooter would be on the next flight out of San Francisco and brought to our home, special delivery, that night.  We were given our claim slip which included an 800 number. We were comped 1000 frequent flier miles each, which wasn’t even worth the lost time.
We got home.  I took a shower and collapsed.  The adrenaline rush of losing my scooter, was now breaking down and fatigue and pain were setting in.
I woke up around 1:30 am.  Andy was still up; getting ready for work the next day.  He had lost precious prep time while we struggled with baggage claim.  Our flight had arrived at 7:30 pm but we didn’t get home until after 11.
While I ws sleeping, he had called baggage claim and was told that they still didn’t know where my scooter was, they had given it to the delivery company and it would arrive either after midnight or the next morning.  There was never any inquiry as to our work schedules or other commitments and what it would mean to have to wait for the wheelchair.  I attempted to call baggage claim, myself, but got put on hold and disconnected.  The on line tracking system was not very helpful either.  It simply directed us to call a supervisor in order to better help us.   I called back and got some one in the Philippines; Lose luggage in California and someone half way around the world will help you find it.  A very polite woman named “Kim” tried to assist me but had little information on my missing scooter nor did she have any decision making authority.  She confirmed that the record indicated that “my bag” would be on the first delivery tomorrow.
“You did not just call my wheelchair a bag did you!?”   I asked with absolute incredulity.  She apologized but explained that all lost luggage was referred to as bags. She would have a supervisor contact me and gave me a local phone number for the delivery company.
At 3 AM the phone rang and a man told me he had my wheelchair, in front of my house and that I should come out and get it.
I should come out and get my wheelchair!
He was down the street, expecting me to walk down a steep hill and bring the chair up myself.  I reminded him that it’s a wheelchair. It’s not a surfboard or a bicycle!!!  He told me that he was alone, was there anyone else who could help him? that if he were to bring me it himself, he might break it.  Andy went out to get the chair.  But no one had told us we needed to provide labor in order to receive this misplaced “bag.” The delivery man told me I needed to take it up with United.  This is their idea of special delivery.
I was awakened by a phone call from the delivery company at 7:42 am and was told I had to talk to United, that they only paid for one delivery person who couldn’t deliver the wheelchair to my door by himself without damaging it.  I tried to get back to sleep when the phone rang again at 8:13 am from United’s baggage claim.  She explained to me that the 2000 frequent flier miles were compensation for the delay, that the problems related to customer service would need to be taken up with them.  She gave me the number.
By law, airlines are required to accommodate disabled passengers.  It would seem that one reasonable accommodation would be trained personnel who know how to appropriately handle expensive, essential medical equipment and how to talk to and work with customers who have special needs. I don’t fault the workers. This is corporate policy.  It is corporate policy to refer to all missing items as “bags,” to send only one delivery person to do a job that requires two.  It is corporate policy not to train the personnel, to cut corners and hire people without the requisite qualifications to handle expensive medical equipment or to transport disabled people with dignity and appropriate care.
I spent the next few days at home, canceling all appointments; recuperated.  My legs have been weaker than usual, with shooting pain and cramps.  I’ve had gastro-intestinal distress and colon spasms.  The whole experience left me demoralized, depressed fatigued and sleepless.  I’ll call customer relations in the next few days, when I’m feeling a bit stronger.
In all my conversations with the airline personnel, everyone apologized. But apologies without action are simply excuses to continue doing what has always been done.  We had lost hours of our time and I had endured humiliation, stress, pain and suffering.  I have only flown with my scooter four times.  This was the only time there had been a connecting flight and they lost my scooter; hardly a good track record. I wanted someone to retrace the steps and figure out what went wrong.  If they were really concerned, then they should speak to me in the language of the corporation. Anything less is like a drunk the morning after; promising to stay clean until the next bender, full of remorse and hollow words.  I want policy change so this doesn’t happen again, and real compensation for real loss.
(all employee names have been changed.)
United Airlines policy on passengers with disabilities: __,6823,1039,00.html
United Airlines policy on wheelchairs:__,6722,1040,00.html

My Travels With Charley: Portland and Bust! Part 1

Andy and I went up to Portland because he had a speaking engagement on a panel at a Middle School with Arun Gandhi and to meet with members of the Oregon Educators Association interested in forming a state Peace and Justice Caucus.  Andy is the regional chair of the NEA Peace and Justice Caucus and co-chair of the CTA Peace and Justice Caucus.   Oregon Educators Association (OEA) was holding its annual Representative Assembly (RA) that weekend and are just starting to form an Oregon Educators Association Peace and Justice Caucus.
This was only the second time I’ve tried to travel in several years.  The trip to Boston last summer was for three weeks, which gave me time to recuperate from the flight before venturing out.  But a weekend trip doesn’t afford me rest time.  We traveled up on a Thursday and woke up early Friday to go to Canby where the  Peace Advocates, a group of students at Ackerman Middle School under the leadership of OEA member and Ackerman teacher, Tony Crawford had invited Arun Ghandi to plant a peace pole in their peace garden.  (I’ll be going into greater detail of the Canby visit on the Café Intifada blog, complete with photos  –amazing work!)
Unlike many of Los Angeles’ public schools, this school was very accessible.  I bopped around in my scooter with little effort.  I had assumed that the building had been built after 1990, after the passage of the ADA, but in fact, I was informed that it had been built in the fifties, and refurbished for greater access.  Many schools in Los Angeles, even those built after 1990, have stairs and other obstacles to universal access.  Student’s whose only disability is ambulatory, have to be educated in special education facilities away from the general public.  That is, in Los Angeles,  a student with no learning disability, who may only need minor adjustments for physical education is often not allowed to participate in the mainstreamed classroom at many public schools.
Back in Portland, Friday evening, we ate dinner at the restaurant in the Red Lion Inn at Jantzen Beach, where the teachers were meeting.  Unable to get a room at that hotel, we were staying at the Holiday Inn, less than a mile away.  Both hotels were very accessible and the staff was very supportive and helpful.  The Holiday Inn was cleaner than most, with new pillow top mattresses and three sheets with a white comforter between the top two, which is much cleaner than the quilted bedspreads one finds in many Holiday Inns, as well as other bargain hotels and motels.  I also took advantage of the pool and the jacuzzi. Friday night I went back to the hotel to rest while Andy met with Oregon educators.   I slept most of Saturday while Andy worked, leaving the hotel for lunch and dinner.   That evening we ate in downtown Portland with Andy’s brother, Michael who lives in Portland and was celebrating his 61st birthday.  Portland is a very accessible city.  Every store and restaurant in downtown Portland was accessible, even in the older buildings.  This takes planning and consciousness.  It also requires a lack of bigotry of those of “perfect body”  (the temporarily able bodied) who would prefer not to have to socialize with the less desirables.  Los Angeles is consumed with the body beautiful, coupled with what I call spiritual fascism; “If you are sick or your life isn’t going well it’s because you aren’t spiritual enough.”   My illness, according to this theory, and my lack of access that comes with it, in a society that bars my entry into so many public establishments, isn’t due to the natural course of disease, the immortality of the flesh.  It isn’t due to trauma or toxins, discrimination or stress,  differences of class, privilege, sexism or racism, but  to bad karma; to some essential personal shortcoming, spiritual or emotional, bad deeds in this or a past life.  Mix the cult of the beautiful with disability rights and what is already an intolerant society becomes a very discriminatory one with brutal obstacles to full inclusion in the greater society.
This becomes all the more luminous when I travel and find the derision, resentment and hostility so common to Los Angeles, relatively lacking in many other places.
Sunday, Michael had planned a birthday brunch with friends, especially people Andy and I would want to meet.  I had been in such pain at dinner and concerned with having enough strength for the flight back, decided to forgo the brunch and rest all morning. I didn’t get to see much of Portland, except for the ride to Canby and dinner on Saturday. But the clouds did clear enough on our last day for a spectacular view of Mount St. Helens from the plane window. It would have been wonderful to go to brunch, or to spend Saturday, while Andy worked, bopping around town in our rental car instead of sleeping in a hotel room overlooking a dumpster.  As it was, the flight back was very difficult and we did not get home until after 11 PM. The airline lost my scooter on the return flight and replaced it with insults and humiliation.  We did finally get it back.
But that’s another story……..