Category Archives: My travels with Charley

Diary of a Staycation #1: New Meditations

Diary of a Staycation #1: New Meditations

My life has changed so much since I started this blog. I’m older, my body is not at cooperative as it used to be, added a few more diagnosis to the mix of my DISabled life. I was terribly lonely when I started this blog. Isolated in suburbia, a single mother on a very limited fixed income, I was dangerously alone. Today I live in community, with very little privacy. A life of abuse, the resulting lack of boundaries, and so many years of isolation and I accept my lack of privacy as a choice and a blessing. We need each other more than we need time alone.  My partner, Andy and I along with an amazing team, including Glenda, Xeres and Carlos, run a modest and wonderful bnb out of our home, as well as provide a variety of community services. (Read more at dragonflyhill.wordpress.com, a web page and blog I also manage.) I handle most of the social media, from our airbnb listing pages, to our blog, twitter, facebook, yelp and google.  I did most of the photography for our advertising and our blog and most of our writing. Guests come from all over to stay with us, and we start every day with a huge community breakfast. We rarely know who will be joining us, including local activists, community members and guests.  Xeres and Andy and I comprise the board of the newly form The WE Empowerment Center (theweempowermentcenter.wordpress.com)

There’s a lot of physical, cognitive and emotional labor that goes into this space and maintaining community.  I haven’t had much time to court my muse, to write creatively or to do fine art photography.  And on the way, I’ve lost pieces of myself.

So today I’m starting. Today I’m taking myself back. Leaving the home business to my capable team, I’m taking a few days off and staying in the bnb of a local airbnb host and dear friend, for a few days of meditation and creativity.

Here are some samples of food for thought and where my mind is wandering, a map of sorts. If you’ve been following me, (and if I don’t know you, please reach out), watch out. I’m going to be posting a lot of new material, much of which has been 90% finished for some time, and has just waited for the time to focus on it, and craft it to perfection.

Music for meditation

Black and white image of a samuri in a forest. The image is very soft and slightly out of focus. Text: A student said to his master: "You teach me fighting, but you talk about peace. How do ou reconcile the two?" The master replies: "It is better to be a warrior in a garden than to be a gardener in a war."

H/T Xeres Villanueva who posted this to her facebook feed.

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No Room at the Inn.

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two scooters loaded into our van.

well, i’m on vacation, the first vacation in years. it’s piggybacked onto a conference my partner, andy griggs has in oakland.  so we planned to drive up the coast, stay near san luis obispo, drive to emeryville, near oakland, stay for a few days, head back, stay in santa cruz, and come home.

tonight we get to our hotel on avila beach,  which we were able to get at a great rate, through a special program. it’s a very nice place.  i checked the web page and called in advance, before booking the room, where  a high degree of wheelchair access was indicated; even a lift to allow for pool and spa access (which neither of us needs, but it’s an indication that we would be welcome and accommodated, unlike those places where they go out of their way to keep us out. — more on this later.) when i spoke to hotel staff,  i very carefully explained that we didn’t need a wheelchair adapted room (lower cabinets, walk in shower, etc.) but that we needed to be able to get to the room without obstacles (stairs, for example) and be able to get our scooters in the room.  i even asked how many elevators there were and was told that there were two. (because i’ve had the experience of no access because the only elevator is broken and i just couldn’t get to my room.)

we get to the hotel and ALL the accessible parking spaces are taken. the other spaces are down a steep hill, and past rows of cars, which is really dangerous for wheelchair users because cars can’t see us and we can be backed into.  it’s 9:30 PM.  after considerable negotiations a very kind clerk and a very rude security guard “let” us park in the blue striped space which risks a hefty ticket and towing fee.  no other option was given to us and our offer to have the security guard park our car for us is rejected. initially we were told we would have to park down the hill. i explained that we couldn’t do that, that i wasn’t even sure the scooter could get up the hill.  i was exhausted and explained that i was now in a an impossible situation, that they were basically telling me to do something i cannot do.  AND I CALLED BEFORE BOOKING THE RESERVATION.  we we’re told that they have met their legally required number of spaces. like that makes the fact that i can’t leave and can’t stay, any better.  i check and see that neither of the cars on either side of the blue striped space, is a van, which would mean our car would be blocking side door van lift access to their car.

the clerk was embarrassed by the behavior of the security guard who showed absolutely no empathy, and had made sure to repeatedly tell me what he could not do and how the legal responsibility of the hotel had been met. (except that I HAD CALLED BEFORE MAKING THE RESERVATION, AND THEY SHOULD HAVE LET ME KNOW THAT PARKING MIGHT MIGHT MIGHT BE A PROBLEM.) “he’s usually a very nice guy, she said.

“well, dis-ability brings out sociopathy in normally empathic people.” i explain. we’ve seen this before, a lot. many of my fb buddies have seen this on online discussions, and my real world friends have seen this in situations like the one described here, when we go out in public, where absolute cruelty without consequence is demonstrated unabashedly.

we park the car, and head off to the pool and i relax in the hot tub, to the extent that one can relax while paying to be discriminated against. we get up to our room. it’s now 11:00 and we’ve had a long day and we have NO SPOONS* left, and i notice a message light on the phone and call the front desk to find out that while the hotel won’t be towing us for parking illegally in the blue striped space, if another guest calls the cops, we could end up away from home without a car and have to spend some serious time and money to get our car back.

so far no one has offered us anything other than NO-pologies, like “i’m sorry you’re upset”, we’ve not been offered any comps or real options.

what they do offer us, is to allow us to re-park our car at the base of the hill and access the hotel via the employee entrance. had they offered this when we were in the lobby, we would have been fine with this. but it’s 11 PM and we can barely move.  this means scooting down to the lobby, loading the scooter into the van, driving the van down the hill, parking, unloading the scooter  and scooting back up to the room, which is about 2 blocks of corridors from where they are now suggesting we park the car.

andy decides to take them up on this offer, because risking getting a huge ticket or having our car towed is just NOT an option.

earlier in the day we saw a restaurant in santa barbara, and i wish i had pictures, but my digital camera was in the car, and my iphone was out of electricity. it was a restaurant that could have been accessible, it was even ramped, but the management had carefully placed signs and plants and tables in such a way that access was impossible.

this is why so few pwds go on vacation.

now, before some bar hopping, “slunting” pedantic activists from yale, or USC,  privilege bait me (you know who you are!)  for having the nerve to complain that i can’t access a luxury vacation (it’s not like low end travel is even remotely an access option!), please tell me, are there any other demographics to whom hotels and restaurants would acceptably bar access; would refuse to provide equal service for the same payment?

the day was otherwise pleasant, beautiful coast, photography, talking in ways we haven’t before, or at least so long ago,  i can’t remember,  and much needed time together, but right now, i don’t really want to be here, and yet i also am just not able to leave, either. i do hope tomorrow is better.

and returned to the room, and tells me the charger to my scooter isn’t working. we have one charger between us, for two scooters. hoping we don’t lose that one too.

relax relax relax.  ohhhhhhhhhhmmmmmmmmmmm.

*http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Disability News: Breakthrough on Airline Travel

Airline travel is especially difficult for pwds (people with disabilities.)  Airline staff is routinely rude and hostile to disability access (one exception in my experience was Frontier Airlines, where service and accommodation went well beyond anything required by law or even human decency– on one flight the pilot made sure my chair was secure in cargo, and upon arrival, brought the chair up to the cabin, himself.) But on one flight, United broke both my walker and my wheelchair.  I noticed problems with the chair, right away, and reported them, but didn’t notice problems with the walker until I got home, since I was using the wheelchair.  United staff was impossible to reach, and we spent much of the next week attempting to get some resolution to a drastic loss in ambulatory, medical equipment.  Finally, they did agree to replace both items, but not without the outrageous “you’ll have to bring them in for inspection.”

“Are you listening to yourself?” I asked.  “Your people broke my wheelchair and walker.  How do you suggest I bring them in?”

On another flight “we lost your wheelchair, please stand up and come with me.” The wheelchair did not make the connecting flight, and no one contacted LAX to alert them. Locating the wheelchair took several hours, and special delivery to my home, did not include sending enough staff to actually get the wheelchair out of the van and to my front door.  ” I have your wheelchair outside, will you please come out and get it.”  

(for the full story, go to https://inbedwithfridakahlo.wordpress.com/2007/05/07/%e2%80%9cwe-can%e2%80%99t-find-your-wheelchair-would-you-please-stand-up-and-come-with-me%e2%80%9d/

On yet another flight, with Jet Blue, I was hideously ridiculed by flight attendants, when I asked for assistance to the onflight restroom and somewhere to sit while waiting; each flight has an aisle width wheelchair for this purpose, but they refused to get it, insisting that I didn’t look disabled and threatening me if I “didn’t behave myself.” Their behavior was so bad, that two other travelers, we didn’t know, came up to us and offered to be witnesses.  We filed a complaint, but never heard back, and with everything happening in our lives, didn’t follow up. –so many indignities, so little time!!!

Airports, because there are so many wheels needed for transporting luggage, are relatively easy to get around by wheelchair, though we’ve experienced revolving doors, and other passageways that are not accessible, and with no signage, at the starting point, had to return to the gate and go around much of the airport to get to baggage.  No one offered to help us, to find a more direct route or even to apologize for the inconvenience.

I find airline security to be extremely problematic, as they insist, if you are traveling in your own wheelchair (imagine that!) on separating you from your luggage; while your luggage goes through the x-ray machines, you, in a wheelchair must go to a different location to be frisked, and the wheelchair checked.  There has to be a way to search the person and the possessions together, but we haven’t found an airport that provides for this.  I always protest, and on one occasion, they did  search my items and then took me and my items to the station where  they searched me and my wheelchair.  Usually they insist that I leave my things with Andy, assuming that I have no privacy issues with the person with whom I am traveling (suppose this were a co-worker, boss, etc. on a business trip, an abusive spouse, or any of a number of scenarios in which I might not want someone else to be in control of my possessions or to have my possessions out of my sight.)

 

The hostile indifference of airline staff is considerable.  So it is with enthusiasm, as I have yet to travel by air without at least one indignity due to disability discrimination, that I read, and pass on this link to a judicial ruling, long overdue, obliging airlines to adhere to the ADA or face litigation. 

 

http://www.detnews.com/apps/pbcs.dll/article?AID=2008809030438

  Federal judge: Airports, airlines subject to ADA rules

  Paul Egan / The Detroit News

 

 

http://www.detnews.com/apps/pbcs.dll/article?AID=2008809030438

Blog post updates

The following posts have been updated with photo images that just took a little longer to prepare, so I added them today.

https://inbedwithfridakahlo.wordpress.com/2008/04/13/diary-post-the-hardest-work-i-do/

https://inbedwithfridakahlo.wordpress.com/2008/03/20/scooter-walker-and-cane-choosing-the-right-tool-for-the-task-and-time/

Scooter, Walker and Cane: Choosing the right tool for the task and time

Breakfast With a Few Close Friends;  Photo by emma rosenthal

Breakfast With a Few Close Friends; Photo by emma rosenthal

Now you see it, now you don’t. So, if I run into you at the market and I’m not using my scooter what does that mean? If I’m in a small store with ample parking and I bop in and out, without any support; what’s that about?

I’m sure it’s confusing to some people, and allows other the fodder to spread rumors that I’m not really disabled; it’s amazing how many people practice medicine without a license. But I need different tools for different tasks. I’m not paralyzed, though the use of my legs (and my arms at times) is limited, and as I’ve stated in this blog many times, that limitation varies. There are days when I cannot get out of bed, and there are (few) days when I can go for a long walk. –The longest walk since my illness onset, was a six mile hike about 5 years ago on a favorite trail. I did the hike, with a friend, a cane and a week to recuperate, but I did it and it made me happy. Before disability, I used to do that hike, alone, every weekend and in half the time.

Every device has its limits. A walker and a scooter not only prevent me from ascending stairs or even curbs, but also many thresholds, some doorways and any narrow passageway (such as store aisles.) A cane allows me to climb stairs (to the extent that I am able, and certainly a few steps isn’t problematic much of the time) but reduces the use of my arms by one, so that it is hard to shoot a picture, walk the dog, carry things. The walker does reduce my arms by two, but a walker with a seat, doubles as a cart and allows me to walk without the burden of carrying heavy items. A shopping cart serves as a walker, providing much of the same support, though it doesn’t have a seat in it to allow me to sit, should I need to.

For longer distances: demonstrations, shopping malls, festivals and college campuses, the scooter is a necessity, especially if I am carrying heavy bundles such as cameras, computers, books etc. But once at my destination, it’s a bit of a liability, as it is large and clunky and makes getting in and out of even accessible bathrooms awkward and difficult. For social events, where people mingle, the seated walker is essential. It allows me to move around the room (to the extent that the chairs and tables have accessible spaces between them) and participate in conversations, moving in and out of the crowd with social agility. (And at the buffet, I have a place to rest my plate.) Without the walker I’m stuck in a seat, or forced to stand when talking to people, which is harder for me than walking. I don’t know why, but standing seems to bring on more stress and pain than any other activity.

I often bring the cane with me when using the scooter or the walker, to allow me options that physical obstacles prevent me from utilizing. It allows me to walk unimpeded for short distances or to leave my larger devices behind when social design would either prevent or hinder my full participation. (Such as a banquet seating arrangement where I’ve been placed far from where my scooter or walker could access — at the annual NEA Human Rights Awards Dinner, people with wheelchairs are often seated first, but once everyone else is seated, can’t get out, so using the restroom is very problematic. Other events segregate us to the area around the edges of the event so that we don’t have full social participation. (The real solution is to rent larger halls and space the tables so that pwd can move safely and freely around the hall.)

On a wild occasion, or in the event of my ever present forgetfulness, I may forgo all devices and just walk around like a normie. I risk falling or losing my balance in the short run. In the long run, I risk increasing my fatigue. Again I have good days and bad days, so the risk varies.

I’ve taken to walking the dog in the park and bringing my camera; (or scooting, depending on how I’m feeling that day.) Walking is good for me, in moderation, and surprisinglly, I’ve noticed, since getting the scooter, and using it when I have longer distances to cover that I am stronger for shorter walks. With dog and camera, the only useful device is the scooter, so I don’t get the benefit of the exercise (though the dog does feel better!) The walker would also be cumbersome, especially where holding the leash is concerned, and the cane doesn’t allow me the use of both of my hands, so often, I opt not to use either.

Since getting the scooter lift, which makes moving the scooter from one location to the next effective, getting the walker in and out of the car has proven more difficult. The scooter lift, which is affixed to a hitch on the back of my Toyota, makes the trunk absolutely useless for an item the shape and size of the walker, at least for me. Someone stronger might be able to reach around the lift to get the walker out, but I can’t. So the walker needs to be in the back seat (limiting the number of passengers.) So if I’m going into a small store, or I’m feeling a bit stronger one day than another, I might just go in without the help of scooter, walker or cane.

Finally, each tool comes with its own image and stigma. I chose a scooter over a power chair because of the expectation that people in wheelchairs can’t walk at all, but that people in scooters can walk small distances. The resentment I have experienced when I’ve used wheelchairs and I’ve stood up has been overwhelming. I wonder why it bothers a total stranger, who is just passing by, what I can and cannot do. I’ve taken nothing from them, except perhaps their pity. On the other hand, the cane carries with it dignity. I’m not sure why, but it does. It also is a powerful deterrent against attack as it is essentially a stick. The walker seems to be the most shameful of devices, recipient of the most jokes and is the least fashionable. Even more than a wheelchair, (which perhaps evokes pity or invisibility) it seems to evoke more derision and ridicule. I feel the most vulnerable and open to attack when using the walker. It was the hardest of the devices for me to accept the use of.

So, as with all solutions, each presents its own set of problems. Even in a fully accessible world each device has its own benefits and liabilities. Each is a tool to assist me in greater access, artistic expression and social opportunity. That choice for pwds provokes such resentment and distrust has less to do with disability and more to do, in my opinion with ableists bigotry and the narrow expectations and place ableism allows for pwds. Use of device, as with treatment, housing, workplace access and education are all aspects of the coveted value: self-determination, no less important for pwds, than for any other marginalized population. It took me years to accumulate the funds or get prescriptions for these devices (scooter, walker, lift.) Canes are pretty inexpensive. Financial constraint should never, in a just society, be an impediment to access or health care, but that’s a chief reality in the U.S. where health care and human needs are so abysmally secondary to the military and the prison industrial complex. I went years unable to access museums, college campuses and shopping malls. It is a great relief now to finally have the equipment I need to get around, but this is not the case for everyone and in achieving social justice, needs to be addressed. In relation to gender and race, we talk about breaking down barriers and opening doors, metaphorically. The metaphor refers to economic and social barriers, which we too contend with but for pwds these barriers are economically, socially and physically imposed and must be removed, both in how we as a society people space and in how individual pwds can and choose to interact within the obstructions already imposed.

Suddenly Last Summer- Part 3 Education International

Education International

“True peace is not merely the absence of tension: it is the presence of justice”– Martin Luther King Jr.

Q: When are indigenous rights not indigenous rights!?

A: When they are Palestinian indigenous rights.

Before the EI Convention,  there are several smaller pre-conferences, including one on indigenous rights. The conference was divided into indigenous and non indigenous people (isn’t everyone indigenous to somewhere!? – I hate these simplifications of dialogue and narrative.)  Andy and I went to the room for non-indigenous people.  The meeting was chaired by Judith Moorehouse, from the National Union of Teachers (GB). NUT has taken a more progressive position on Palestinian human rights than any U.S. union.  She posed the question: What impediments do you experience in your union in discussing indigenous rights?  I raised the issue of Palestinian human rights and how difficult it was to raise that issue.  She immediately shot me down, and quite rudely, by insisting (demonstrating?) that we only discuss indigenous populations within our own territories and we can’t solve that problem here.  (As if, in a one hour discussion, we could solve ANY of the worlds’ violations of indigenous rights!) Andy raised the issue of Iraq and Palestine and the U.S. roles in both occupations.  His contribution was more graciously received, which neither or us understands.  I added that given the breath of U.S. imperialism and neo-liberalism, it behooves us to speak up for indigenous rights of those either directly or indirectly under U.S. occupation.  At this point I was again dismissed “We don’t need a history lesson.”

Apparently “we” do.

Andy and I could not figure out the difference in response to us, though in both cases, politely or impolitely, Palestine was brushed under the rug, and in both cases, we raised our hands, were recognized and expressed a similar point of view on an essentially relevant topic.  Neither of us were insulting or off topic. There was no reason, no apparent reason for her response.  The only difference we could discern was gender and disability.  Another possibility is that behind the scenes my union sisters from Los Angeles had warned the chair ahead of time, that I might bring up that issue.

My paranoia never exceeds the schemes of my adversaries.  Andy and I had strategized how to avoid the two members, “Mildred” and “Camile”,  of the HRC who were in attendance.   But nothing prepared us for what was really in store.

After three days of trying to negotiate a conference in which I was one of a handful of wheelchairs users,  and the only one in the U.S. delegation, I suggested at a delegation breakfast meeting that two seats on the aisle be reserved for me and Andy, so that I could have access to my scooter and still sit with the delegation.  Reg Weaver, the NEA president, who walks with the assistance of a cane, made note of how much better I was walking that day from previous days.  This provoked many of the people at the table next to us, full of UTLA members, including two UTLA officers (Julie Washington, Lois Bradford) and “Camile”, to break out in laughter. 

“Is something funny about that?”  I asked. 

Now, there are three answers to this question, two of which provide perfect refuge for bigots. 

  1. “No, I’m sorry we were laughing at something else.”  (With either real or feigned sincerity.)
  1. “We weren’t laughing.” (With noticeable sarcasm.)

or the third answer, which is the answer with impunity, that was delivered, by UTLA House of Reps member, “Tammy”, a woman I have never worked with or even spoken to. 

“Yep, it’s funny!  Yep it’s funny!”  Loud and with arms crossed.

To add fuel to their fire, we had forgotten to charge my wheelchair the night before, so were charging it during breakfast, at the only available outlet, which was near very wide double door leading to the stairs, it was one of three exits from the large meeting room.   I had to negotiate the room without the scooter, which on good days, or short distances, is not a problem.  But for bigots like the women at the laughing table, who feel that if one can walk one day, one isn’t really disabled (why they care?) it just increases their justification for humiliation and ostracism.

Reg insisted that no one had laughed at me, and Andy rose and explained part of the history, and that there had in fact been quite a bit of laughter at the table next to us, and that there had been a problem with gossip about my disability. 

“Tammy” stood, approached the mic and announced that she didn’t understand what the problem was, that all I had to do was look around the hall, that there were plenty of chairs. 

She was right, there were plenty of chairs; in the back; not with the delegation.

Now, what level of depravity or desire for belonging, or bitterness, or bigotry or self-hatred, would behoove “Tammy”,  an African-American woman to tell anyone that their place should be silently and happily in the back of the room!??

After the program ended, Reg  Weaver came over to talk to me.  He  is generally a sympathetic man,  but like many, often respond to an injustice by attempting to find fault with the target and not the marksman.  It’s easier that way, to blame the victim.  The victim is only one, usually, alone and less powerful.  If it’s the vicitm’s fault, there’s no problem and then, there’s no conflict.  This is typical of how teachers handle teasing and bullying in the classroom.  It’s just easier that way.  The target leaves, the problem is gone; much easier than taking on a powerful and organized clique.  He suggested it wasn’t my disability that upset people but the way I handle myself. It’s a ridiculous assertion.  Did their dislike of me, regardless, ever justify their ridicule of my disability?  Perplexed at when he had seen me “handle myself,” as our contact had been very minimal, and certain that his point of view was fueled by gossip, I asked him what he  meant.  “Was there something wrong with my initial request for a seat?”  He assured me there was not.  He gave as an example, my behavior at the Indigenous Rights Conference in bringing up the issue of Palestine, which he had not attended.  That is, his point of view was only fueled by what he had been told.  Andy and I relayed to him what really had happened and I pointed out to him that the president of Education International is from COSATU, the South African Federation of Unions, which has declared Israeli apartheid to be worse than South African apartheid, that to limit discussion on that issue was totally out of line. But I was really hurt by this admonition  and the preceding humiliation, and made my points without the decorum that this assembly respects (the negative peace!) ; behind the scenes, indirect, with deference to power and prestige and only the most minimal recognition of real human rights or the challenges and confrontation that the fight for social justice always exacts. 

Which is really the rule I broke: the emphasis on manners and decorum, that strangely doesn’t apply to the laughing women or to Howard’s ridicule at the Human Rights Committee Retreat the year before.

At that point people converged on Andy and me, both sympatico and antipatico.

I felt all connection to my legs go, which often happens under extreme stress and I sent Andy to get my wheelchair.  UTLA Elementary Education Vice President,  Julie Washington, who was seated at the laughing table,  and had made no attempt to contradict the bigoted ridicule, or defend my right to basic access.  (all I asked for was a seat at the table!!) told me I wasn’t helping Andy.  That was her entire contribution.  She didn’t offer me support, solidarity or compassion nor had she admonish “Tammy”  or the others, for the ridicule; she had been at the HRC retreat, and the dock in Philadelphia.   I’m sure had heard  “Camile’s” gossip, and unlike Reg, was totally aware of the social dynamic “You need to speak up Julie.”  I told her. Neither she nor anyone else at that laughing table, full of UTLA members, admonished, disassociated themselves from or denounced the bigoted behavior of the laughing UTLA members.  It’s safe to say that at the very least, their silence was complicit.

While Andy was getting my chair, Julie left me and went over to him, and reportedly told him the same: that I wasn’t helping him any.  What did she want him to do?  In addition to the humiliation I had already endured, did she want him to demand obedience and passivity in the face of discrimination and humiliation? Can you imagine the private conflict in our hotel room, she was lobbying for!?  Michael Novick is right when he says the problem is one of a lack of sisterhood! The next time she saw me was at Barbara’s funeral, at which point she extended an unsolicited hug “Emma, we haven’t seen you since Berlin.”  Amazing!

Shirley Howard, The Chair of the NEA Physically Challenged, Caucus approached me and also, in the sea of people, made greater issue with my anger than with the indignity. She might have introduced herself to me, not after a problem erupted, to silence me, but perhaps on the first day of the conference to let me know how she might help me negotiate a difficult social rubric, where niceties are the mandate, and more is resolved behind the scenes than in open discussion, where gossip is deadly and recourse limited. I don’t know what her disability is, as it was not visibly apparent, and perhaps she doesn’t understand the nuances of maneuvering in a scooter.  Nonetheless, her inability to advocate for disability rights calls into question her ability to serve as national chair within NEA, advocating for PWDs.  Her role in this situation was clearly to enforce the status quo, to bring my protestations into line and to quell her own embarrassment.  Perhaps she was also offended that anyone would speak to the issue in ways beyond her own, that perhaps we had upstaged her, that this was her territory and in defending myself, I had stepped on her toes.

“Tammy” approached me and told me that she hadn’t laughed at me,  which of course, was not true.  Then she said something so amazingly outrageous.  She told me she didn’t have a problem with my disability (why should she?) but she did have a problem with my wheelchair, because it could be in the way during a fire when everyone else needed to run down the stairs!!!!

(For those who don’t get it; wheelchairs don’t go down stairs. What did she want me to do?  Burn quietly in the corner?)

Andy and I left,  making our way down a long hallway through the staffing area,  to the tiny elevator, provided for disability access,  and “Tammy” with two friends, apparently opting not to take the more proximitous stairs,  had the nerve to follow us into the elevator,  admonishing me on the ride down, to think positive!  That was my problem in the first place; I mistakenly thought that a simple and positive request to participate would receive a positive response. Positive thinking can have devastating consequences.  I often do better when I am prepared for the worst.   

These conflicts have been very trying.  What we learned in Philadelphia and Berlin is that I’m not welcome even as his partner, at a breakfast meeting or a social gathering related to his union work.  This is no longer about power within the HRC.  That’s been established.  I’ll never chair another conference, host the listserve or master the web page.  (Not that anyone has stepped in to really take on those tasks, but that wasn’t the point, was it?)  We’ve had difficult waters to navigate.  One would think, with all the power politics, and the people who claim to be loyal to Andy, that they would give him the respect of treating me with at least the most superficial courtesies.  Later that summer, and in Berlin as well, Andy has been approached by HRC members wishing reconciliation, but adding that that doesn’t include me.  Strange, there’s no position or action that I took, that Andy didn’t take as well, but for some reason, I’ve been the target.  He’s suffered as well, though the party line is his behavior is due to my bad influence.

We’ve struggled with the imbalance.  I remember in discussions on racism, on being confronted with the exclusivity of her church, one woman said she wouldn’t invite her Black friends because they wouldn’t be comfortable, to which the answer was “Why do you belong to that church?” 

Andy has national stature in an organization where it has been made clear to me, should I even show up for breakfast, I will be confronted with extreme levels of humiliation.

Back in the room, we tried to figure out what to do next.   Everyone who had just humiliated me was staying at this hotel.  They couldn’t be avoided, even if I didn’t participate in the conference.  It was like being back in grade school.  I couldn’t just ignore them.  Strange advice we give the targets of bullies, as if the target sought out the bully and not the other way around.  You can’ t ignore people if they go out of their way to interfere with and harass you.  This pithy advice puts the burder for solving  and absorbing the problem once more, on the victim. There was no internet access in the hotel room.  If I went to breakfast, at any of the restaurants in the hotel lobby, sat at a table to check my email, left the hotel to go somewhere, these people could not be avoided.  I was a goldfish in a fish bowl.  They had sought out, provoked and took visible pleasure in my pain, suffering and discomfort;  (in children, a sign of immaturity, in adults a clear indication of sociopathy!)  If they simply didn’t like me, they could have left me alone.  (What did they care if I sat on the aisle? Why walk all the way down the hallway to go into a tiny elevator when the stairs would do? ) If we stayed at the hotel,  I would feel uncomfortable and unsafe every time I left the hotel room.

At considerable expense, we decided to change hotels, and Andy would continue at the conference once we got settled.  In the midst of the physical task of packing, I fell in the hotel room.  My coordination had been compromised by the stress of the morning.  I hurt all over. This had been my biggest fear; them laughing at me if I fell.  I never anticipated them laughing because I was walking better. 

We found a hotel away from the conference in downtown Berlin.   It took us most of the next day to settle in.  Andy made his way back to the conference two days later, spoke to what had happened and gave the history for those not from Los Angeles.  “All she asked for was a seat at the table.”

Members of the delegation, not from Los Angeles, let him know that we had been missed and that they had saved seats for us.  Reg told Andy to tell me he was sorry. His offer of an apology was kind, appropriate, and appreciated, but a public offense deserves a public apology. Something I doubt I will ever get from any of the parties involved, either for their overt actions of exclusion or their silent duplicity.   And he also asked when I might apologize. For what?  Expressing appropriate outrage at humiliating and discriminating behavior?  This was nothing like my outburst at Howard’s house at the retreat, for which I did apologize. In Berlin I started my protest with an inquiry “Is something funny about that?”  to make sure that I hadn’t misunderstood.  My tormentors, apparently confident that there would be no stigma attached to their ridicule, confirmed my understanding of their intentions “ yes it’s funny!” followed by my  (and Andy’s) clear and appropriate protestation of the ridicule.  (Funny, why didn’t Andy owe an apology?) Otherwise, was I supposed to laugh along, take a joke, or a poke?  Who is responsible for assuring peace at these gatherings, real peace, not the negative peace.*  Why is the target of the ostracism the one, the ONLY one held responsible for the breach?

Suddenly Last Summer- Part 2 No Good Germans

No Good Germans

First of all, a bit of terminology.  “good germans”, in the Jewish neighborhood I grew up in,  referred to the Germans who under Nazi rule, didn’t participate in the genocide, but rather, simply did nothing. 

So, here I was, in Germany; Jewish, socialist, in a wheelchair (my scooter), and at a labor conference; four capital offenses under that former regime.  But what I experienced was truly amazing!!!!

Our first clue that things would be different, occurred in Munich.  We arrived and, unlike U.S. accommodations, PWDs don’t have the option of having our wheelchairs delivered to the plane.  We have to pick them up at another locations, transported by the wheelchairs provided by the airline, pushed by airline personnel. 

I REALLY HATE THIS!!!!!

The man assigned to push me was really rude, not listening to me, going ahead of my carry on bags, leaving Andy behind to carry everything.  Basically treating me like luggage.  Some of this may have been due to lack of a common language, but the dissatisfaction in my voice was very clear.  I told him to stop and he kept pushing me.  Finally I stood up, so he couldn’t push me, and he pushed the wheelchair into me.  Fueled by this shot of adrenaline, I made my way back to the plane, sat down in the seat, and clearly upset, explained to the flight attendant what had happened. 

What she didn’t say was; “I can’t help you if you don’t calm down.”

I HATE THAT TOO!!!!

 I hear that a lot and its (hm, no better word available here)  BULLSHIT!!!! Of course we can help people when they’re upset, in fact that’s usually when people need help.  What’s the point of helping people when they’re totally content?  Really now!!!

What she did say, in English was,  “He DID that!?  I’m going to tell him off!” 

And guess what happened?

I calmed down!!!!

I REALLY LIKE THAT!!!!

Problem solved. 

We got to the gate of our connecting flight from Munich to Berlin.  In the U.S. lifting people in wheelchairs up stairs,  is not considered an accommodation, but rather a dangerous and patronizing response to lack of access.  After the Human Rights Committee retreat*  I really understood the importance of access,  the ability to come and go without assistance or permission, when I had to obtain help from those ridiculing me, to get my walker down the stairs.  At the gate we were told that I would be preboarded and would be carried up the stairs.  Now, I can get up stairs with some effort, but would have difficulty carrying my bags.  Andy has arthritis, so stairs and portage are also problems for him.  With my scooter, I can drag one bag with wheels, and carry at least one more in my baskets.  All of this  “assistance” leaves Andy with most of the responsibility for all the carry on luggage, which for us, including medical equipment, is considerable.

I realized I didn’t have a grasp of the laws governing access and that I was a tourist in this country, so there was little I could do.  My displeasure was noted, though muted.  The next announcement we heard was that the flight would be delayed 20 minutes.  Then, as boarding began, the attendant approached us and told us we would be post boarded, but that boarding for this flight would now be via jet-way.

It would appear that the entire flight was delayed and the plane moved from the tarmac and stairs to the jet-way, motivated simply by a subtle grimace.  A far cry from the dehumanizing, humiliating experience stateside PWDs  routinely experience when traveling by air. 

Dorothy, you’re not in Hollywood anymore!

We checked into the hotel, and the next day found ourselves negotiating the streets and public transportation of Berlin.  There were PWDs  EVERYWHERE!  –in the subway, the market, the museums, the restaurants, the shops, with families, in beer gartens.  It wasn’t that the physical obstacles didn’t exist.  At the Pergemon Museum,  home of (expropriated) Nefertiti’s bust and the Gate of Ishtar; listed on line as partially accessible, there was a lift to get up the stairs to the ticket counter, and a maze of passageways, elevators, locked doors etc. to get to the main exhibits, requiring the extremely gracious accompaniment of a museum staff member.  At one point I got to a landing in the museum only to find two steps into the hall blocking my access.  Before Andy, only seconds behind me, could catch up, strangers ran to the docent to let him know I needed assistance.  The subway, for the most part is accessible, but there are subway cars that extend a difference of as much as 5 inches above the platform, making direct access impossible.  Again, without provocation, volunteers magically appeared to help lift my beast onto and off the subway.  On elevators, people moved to make room for me.  No elevator was ever too crowded.  Huge difference from amerikan elevators, where people rush in front of me, filling the elevator, so that,  unable to maneuver as quickly, I have to wait for the next one or the next one or the next one, or risk social stigma by speaking up;   “excuse me, but I was here first!”  And my scooter, an ambulatory anomaly in Europe, where both the semi-ambulatory and the para and quadriplegic all use standard wheelchairs, was somehow never in the way, never incurred the wrath of the people around us.  At restaurants I prefer to sit at the table or booth, next to my scooter; I find it more comfortable and more convenient.  In one establishment we asked for a space that would not be in the way, so accustomed we were to trying not to take up too much space.  They showed us to a table, where my scooter would be clearly in the line of traffic the wait staff used to get from the restaurant to the kitchen.  We thought at first they would want me to park the chair out of the way, as is the custom too often in Amerikan establishments, forcing me to sit some distance from my ambulatory device.  NO, they insisted I park the scooter next to the table, and graciously and effortlessly changed their own path to and from table and kitchen.  Later that day we went to the Berkinstock store, a tiny establishment in Alexanderplatz.  There was no where to put the scooter, as I tried on shoes,  that didn’t block display racks.  We were uncomfortable with the space it took up, but neither the staff nor the patrons were at all bothered by the presence of the Beast, nor did they understand our preoccupation with the space it took up.  At another restaurant, one step barred access.  We opted to park the scooter right outside, in sight of our table. The diminutive wait staff person would think nothing of it, weighing no more than 100 pounds  (or should I say 45 kg?)  she lifted the scooter into the restaurant herself!

Despite all my protestations stateside, it became apparent how extremely we had internalized the (both spoken and unspoken) mandate that the accommodation to disability be the individual responsibility of the “cripple” and not the greater society.   What became clear to me in Germany of all places, is the difference between physical barriers and social barriers.  The physical barriers still existed in many places.  What had changed were social perceptions; the collective understanding of the essential value of full inclusion and the collective responsibility for this inclusion.

Germany is a remarkable destination for Amerikan travelers.  Many people speak fluent English, and being a Saxon language, we arrive already knowing tens of thousands of words, we just don’t know which ones!  Additionally, having grown up in a Jewish neighborhood, where many people had names that are also German words (Selbst, Klein, Stein, Rosen, Thal), along with a minimal exposure to Yiddish (an non-standard dialect of German, spoken by Ashkenazi Jews),  I had arrived having been exposed to many German words, albeit out of context, but the sounds themselves were familiar. Within a week (due to both primary language support, previous knowledge and contextual clues) I had acquired a minimal ability to use German to actually negotiate meaning.  I think, within a summer, without instruction I would be able to pick up much of the language.

After one day on the streets of Berlin, I said to Andy “If I have to go out alone, strangers will help me.”

Aside from the one initial experience with the porter at the airport in Munich, I was spared the daily humiliation I have come to expect in the states.  If it weren’t for the brutal winters, I might even consider living here. 

Germany has a growing Jewish community, is actually the preferred destination of emigrating Jews.  (So much so, that the Israeli government petitioned Germany to limit Jewish immigration, so that refugee Jews from the former Soviet Union would be forced to migrate to Israel.)  Now, for those unfamiliar with my face, I am not one of the more European looking Jews.  I don’t pass.  (Though back home,  Arabs and Armenians often confuse me for one of their own.) 

What explains this change in social attitudes?  A Jew, a “cripple” a socialist, a labor activist—4 death penalties little more than half a century ago, winding freely down the streets of a new Berlin, on a strange device, feeling freer than I have felt in years, wondering how far back Germany’s right of return policy might extent.  This is the question any human rights activist might ask.  What accounts for this very real change in values? This very different understanding of space, of place, of community, of membership?