Monthly Archives: March 2008

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.

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Suddenly Last Summer- Part 4 Barbara’s Death Bed and Camile

Meanwhile:   Barbara’s Death Bed  and “Camile”

 

The Old Paradigm
  1. She must hate the ex.
  2. If she doesn’t hate the ex, she must hate the new partner.
  3. If she doesn’t hate the ex or the new partner, then maybe she wants to get back with the ex.

 

Over the course of the summer we had also visited the spa town of Karlovy Vary in the Czech Republic, returning home for a few weeks before flying out to Colorado to visit family.  While we jettisoned around the country and the world,  our close friend, and Andy’s former partner, Barbara Franklin lay on her death bed.  Andy was Barbara’s power of attorney  for health related matters.  We visited her between trips and stayed in touch with her while we were away.  During this time Barbara was placed in a very difficult position by  “Camile”, who  having completed her marginalization of me,  began a campaign against Andy to try to limit his participation in the planning of an upcoming conference.  She was not having the same results in this pursuit as she had had against me.  Her protestations that “Andy was trying to take away” her “power”, was getting a tepid response and unlike her rumors that I wasn’t really disabled, was diminishing her prestige and credibility.  We had heard snippets of this campaign from other UTLA members, but Barbara’s reports provided us with real insight to the lengths and depravity of her efforts.  Barbara, as I stated in my eulogy to her, was both a Christian and a feminist.  She felt very conflicted by “Camille’s” intervention.

While many people in the union had made it quite clear that they wanted Andy to be with Barbara and not with me, Barbara had always been extremely supportive and respectful of our relationship.  She and I had forged a deep bond, amplified by our common experience with illness as well as our common connection to Andy.  It was a difficult decision for her, to tell us what “Camile” was saying to her, not wanting to gossip, but feeling truly loyal to both of us, and not wanting to be implicated in anything that would be hurtful to us.  She first approached me,  and told me that she was concerned for Andy because of what people were saying;  and then she proceeded to repeat to me, without mentioning names,  the gossip that we had heard “Camile” had been spreading around the Union Hall.  “Oh that’s just “Camile””  I told her, which she quickly confirmed.

The next report we got was that “Camile”, unable to bond with Barbara in the campaign against Barbara’s  former partner,  had repeated to Barbara the lies about me that she had been spreading for years.  I assume she mistakenly decided that if Barbara didn’t hate her ex, in rivalry, she would hate her ex’s partner.

Now not only doesn’t a woman on her death bed need to be burdened with these matters, but what good could come from forging divisions between Barbara and the partner of the person responsible for her medical advocacy?  Fortunately instead of reacting to these reports, Barbara again chose to report them to us.  Had she or I fallen for these petty and ancient paradigms of female rivalry it would have put her medical care in grave danger.

Not able to forge splits between Barbara and Andy, or Barbara and me, “Camile” attempted a third approach:  try to get Barbara and Andy together.  “Camile” returned from Berlin, jubilant in her coup against me and reporting it to Barbara boasted that when Andy returned to the conference without me, everyone cheered for him, adding that Andy had broken with me in Berlin.  “Oh nonsense” Barbara reported saying, “They’re in Colorado together right now.” 

Every year UTLA has a retreat at a resort in the Palm Springs area.  UTLA Vice President, Julie Washington, who, after Berlin,  I suspect,  may have been involved in this campaign with more than silent complicity,  and feigned concern for Andy’s position within the union, invited Barbara to attend as her guest. Barbara reported to us that on one night after midnight, a drunken “Camile” came to Barbara’s hotel room to “check on her” and to ask questions about Andy and myself.

Barbara died only two months later, physically the shell of the six foot tall woman she had been.  We had shared our frustrations with the patronizing support given to her in her illness by the same people who had been so ruthless with me.  Regardless of whatever agenda or issue “Camile” had with me, what excuse is there for the pressures and intrusions placed on Barbara in her final days, hiding under the guise of friendship, to manipulate someone so frail for one’s own depravity?

Barbara had offered to confront “Camile” but we suggested that she refrain, concerned that perhaps the same vindictiveness directed at me, might be brought down upon Barbara.

Prior to this event, Barbara had been “honored” as woman of the year, by the Women’s Committee of UTLA.  Speaker after speaker referred to Barbara as sweet.  President Duffy stated “Barbara sweet Barbara.  What can I say about Barbara.”  And then proceeded to talk about himself and his leadership, referring briefly to his wife as president of their home.  It was like a time warp to the 1950’s!  When we left the event, I told Andy I hoped she hadn’t noticed the patronizing treatment, as each speaker struggled to find something to say to a dying woman, not able to really recognize her for her strengths and accomplishments.

Of course Barbara noticed the narrow, shallow honors bestowed upon her; their pity prize, for a woman who was indeed deserving of the prize in her own right.  “I’m not sweet.  What do they mean I’m sweet? ”  She said to me later.  Sweet or not, what man would ever be awarded the sweetness prize!?? 

But this is no doubt, the two edged sword of disability discrimination within the union; the syrupy, patronizing “love” and “adoration”  showered on Barbara, or the brutal attacks inflicted on me.  Each of us, set in our good gimp, bad gimp; real gimp, false gimp, paradigm:  limited, disempowered and regardless of the occupancy of the space around us; terribly alone. 

There is no justice in pity.  There is only justice in voice, in empowerment, in real solidarity based on a true understanding of our common humanity.

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?

Suddenly Last Summer- Part 1 Philadelphia: Home After 19 Years.

Philadelphia:  Home After 19 Years.

Our first stop was my hometown of Philadelphia,  to which I hadn’t returned since I was 19 years old.  I visited myself more than anything else; finding my way via scooter to all the places I remembers from my childhood.  It was a different trip than most.  I didn’t go to those places I might have been inclined to visit had I been a real tourist.  I went to my memories.  I visited my past.  I had been warned that it had changed, but I was more impressed with how much the same it was.  There were specific exhibits, artifacts and paintings in the Museum I needed to see, I had to return to the Italian Market, Reading Terminal and all around down town; city hall, South Street, etc.  As a teenager I had spent a lot of time downtown.  I would take the train and get off at Reading Terminal.  From there I could walk to shops, dance class  or theater.  From Reading Terminal through City Hall to the Museum, the SWP sold copies of  The Militant, and cigarette companies gave out free samples of cigarettes and cigars.  I have smoked on and off again since then; more off than on.  Especially with the fibromyalgia, I can’t tolerate the poison for long.  But, despite their arguments about personal responsibility, as their defense against law suits, my first cigarettes were a gift from the tobacco companies when I  was as young as eleven years old. 

 

Much of this colonial city is inaccessible, with only a few creative attempts at providing access.  (Some cities apply more ingenuity than others.)  Many shops, restaurants and historical sites are not accessible.  Getting to the Art Museum, avoiding Rocky’s steps, was very difficult.  There was no signage, and the handicapped entrance is around the back, up a long hill and through a parking lot, forcing me into the line of traffic of drivers search for or exit from parking spaces, which is very dangerous territory for people in wheelchairs. 

 

One day Andy and I rented a car and went out to the suburbs where I grew up.  One community I grew up in, was a planned integrated community, called Concord Park.  My parents were very involved in the Civil Rights Movement and bought their first home there.  We moved when I was five, but I remember putting streamers on bikes and having an annual bike ride every Flag Day.  I remember nursery school, I remember my three best friends, (Sandy, Delia and Alison) with who I am no longer in touch, but my mom is still close with some of their parents.  These were small track homes.  After a while the white families moved out.  Upon return, I noticed more white families, and so, the demographics change again.

 

The other neighborhood I grew up in is lush and looks a lot like Brentwood, but a huge home in turn key condition and manicured grounds still sells for under a million dollars, which is unheard of anywhere in Los Angeles. 

 

Philadelphia wasn’t without its indignities.  We had called ahead to be sure that “UTLA night”,  one of the social events associated with the NEA convention, on the ship, The Spirit of Philadelphia, would be wheelchair accessible and were assured that it would be.  When we got there and began to board, without the courtesy or discretion of preboarding, I found myself up the ramp but unable to make the transition to the ship without assistance.  In line behind us, immediately behind us were over a hundred UTLA members waiting to board. We were irate, as other activists more annoyed than concerned, made their way past us, as we tried to negotiate with a rude young man in greasy clothes who claimed to be the captain, and spoke to me like I were an insolent child, not a patron, twice his age.  He insisted his ship was accessible, despite the gap between ramps and his offers to lift me, which is not only undignified and humiliating, but unsafe and unacceptable.  With a ramp full of people, I needed to turn around and find my way back to the pier.  The “captain”  threatened me should I hit him with my wheelchair as I tried precariously to maneuver through the situation he and his company had created for me.  There is little room for interpretation.  The ADA (Americans with Disabilities Act) provides clear guidelines regarding accessibility.  Lifting someone is not included within that definition.  As it turns out, we were informed later,  one of the decks was also not accessible.  We demanded a refund, but were told that it was not available at that time; we would have to follow up the next business day.   (To date, we have not been compensated, either by the union, who planned a public event in a segregated location, or the restaurant/ship at which these indignities were suffered.) We left, discouraged, outraged and humiliated. Devastated, and unsupported, I was unable to leave my hotel room for two days.

While in Philadelphia, I gave a poetry reading at Inglis House,  a skilled nursing care facility for people with mobility impairments.  This institution was quite large, with a few independent living apartments as well, that allow varying degrees of care and independence. 

Inglis House has a weekly poetry group, a poetry journal and an annual  poetry contest.  I found them on the internet with a google search for “poetry” + Philadelphia + disability, and contacted them. I was invited to read and discuss my work for an hour.  It was an amazing experience, reading to a community of people with disabilities, the safety of the ghetto.  There is much controversy around large institutions like these, but for me, as a visitor,  it was a relief being around other people with marginalizing impairments, and a physical plant designed for accommodation.  The strain of trying to fit in, the balance between asserting my rights and alienating those around me, the pressure to maintain “the negative peace”  is exhausting.  It was wonderful just being a gimp among gimps and to hear from others equally angry and frustrated with lack of access, hostile indifference, daily ridicule and humiliation.  Disability means existing and attempting to negotiate within a culture that one is not be a part of, or retreating to ghettos such as skid row hotels or convalescent care facilities which resemble gulags more than neighborhoods. 
Andy and I returned to Los Angeles from Philadelphia, for a week home before heading out to Berlin where Andy and I would be active observers in the NEA delegation at World Congress of Education International, the International body of teachers’ unions, worldwide.  We wanted to strategize disability access, give a heads up to the national leadership of the problems in UTLA and how they might present themselves at this event (two members of the HRC clique;  “Camile” and “Mildred” were going to attend,)  and follow up on the refund for the Spirit of Philadelphia.

 

BUT………………………………….

 

United Air Lines damaged both my scooter and my walker, and we ended up spending the rest of the week fighting with the airlines (at first they suggested I bring the equipment in for inspection, and I had to remind them that they damaged my wheelchair and walker, how was I going to bring them in?!!!)  Finally we got United to approve the purchasing of new equipment, and we worked with a local scooter dealer to get us a scooter just in time for the trip to Europe. Death of Charley, the scooter.   The new scooter, a bit larger and more powerful, acquired the name “The Beast.”  Nonetheless, travel stories, will still come under the category; “my travels with Charley.”

Suddenly Last Summer – Introduction

 

Last summer I found myself on Andy’s rollercoaster, as he bounded from one conference to another across the country and the globe.  Summer is when the teachers’ unions have their national  and international conventions.  It was quite the whirlwind, and a few events were so life changing, overwhelming and in some cases devastating, I am only now beginning to write about them, hence the title, “Suddenly Last Summer.”  I would be a terrible journalist.  I cannot keep deadlines.  Like so many women; Virginia Woolf’s Judith Shakespeare (A Room of One’s Own,)  Obligations of family, health, finances are real impediments to creativity, outreach and expression.  Often it is difficult to find the time and the space to write.  And then there is the internal process.  Some of these events were so painful I am only now able to begin to document these events.

 

Also, this year, I focused on graphic arts, specifically photography.  Taking classes and developing new skills detracted from my writing and blogging.  Another impediment was the death threats.  I was afraid to write of anything in the present, or to give details of my comings and goings, where I lived, who I was with.  The criminality of my persecutors forced me into my own underground existence.  This was a difficult year of isolation, reflection and fear.

Diary Post: Where it’s at now

There’s so much to say.  I’ve barely written on this blog in over a year, due partly to the shut down of the blog site, but also to my own need for retreat and reflection.  I’ll summarize a catch up here, and give more details in future posts over the next few weeks.

The events at UTLA where I was essentially blacklisted for my position on Palestinian human rights, and purged within the Human Rights Committee ostensibly  due to conflicts over disability rights, in  what was the perfect storm and an example of the strangest bedfellows, caused me to step back from activism for a while. Personal anguish, burnout and isolation were overwhelming and matters in my personal life required much of my attention.  Andy and I were able to move in together, after three years of dating and commuting 32 miles to see each other.   We found a sweet but small two bedroom apartment in Echo Park, with his cat, my dog and most of our books, computers, clothes etc. We had planned to be here only six months and to start looking for a more permanent place, but days turn into weeks, turn into months.  In September, my son, Leon, home early, from an educational program, joined us, with his life and his stuff.  With the dining area set up as a study with our desks, Leon’s desk in the small living room, our clothes in two small closets and much of our furniture still in storage, we’re pretty crowded and unorganized.  In December we started house hunting and now we’re in a very difficult, creative and what promises to be a rather long escrow for a house that will provide us with much needed space for home, books, art, dance, activism, family, house guests and life. Over the summer, Andy and I traveled to Philadelphia for the NEA convention and onto Berlin for Education International.  In both circumstances we experienced even more marginalization and ridicule of disability, making my participation at a breakfast, or a dinner, as simply the partner of a delegate, impossible.  Travel, fascinating as it was, was difficult with disability.  Germany was amazing (more on that in a later blog!)  After Germany, we went to spend a week at a spa in the Czech Republic.

The move to the apartment was exhausting and my health was very poor.  I spent much of the winter spring and summer (at the spa) getting my strength back, buying fruit and vegetables at the farmers’ markets in the area, cooking healthy meals for me and Andy (and later, Leon,) organizing our stuff, reading and reflecting.

The constant attacks on women’s bodies in our society is difficult enough.  Every billboard, t/v/ show, feature film, magazine cover bombards with unattainable perfection,  the realization of which is itself a threat to health and well being.  The constant attacks, innuendos and ridicule by the leaders within the teachers’ union; allies some of whom I’ve known for over twenty years, was devastating. So little on the left resembles the human rights agenda we claim to support.  The way activists treat activists is so defeating to the cause, so self serving much of the time and inexcusable.

I’d like to say I rose above it, that it made me stronger but the extreme marginalization of disability has been quite overwhelming.  It is hard not to take it personally.  Older trauma issues rose to the surface as all of this was transpiring. It’s been quite a journey.

Slowly I am venturing out again, building allies, finding activity and community that is supportive.

While it is true that many doors are closed to me, the world is vast and there are small cornes in which I can live out quite an exquisite existence.  I’m living in smaller circles and casting narrower nets.

I’m serving on the Boards of one local organization and one statewide committee, where disability rights and human rights are not incongruous. Andy and I are looking forward after the move, in bringing activities and services to the community though The WE Project and Café Intifada, and I’ve returned to school to study graphic arts, web design and photography.

My health has been good.  I am on an effective regimen of supplements and medications that seem to be allowing me to pace myself and finish my course work.  I was afraid I wouldn’t be able to do it, and I am much relieved that I can.

And I am learning the difference between what is private and what is public.  Once burned, you know….

These are difficult times, too dangerous to live one’s life in the open.  I’ve really had to contemplate how to blog honestly without putting myself or the ones I love in the kind of danger I found myself a year ago: my name on hit lists, death threats and few allies willing to step up and defend me.

I think my current condition requires a quieter life, without surrender to the machine; a more creative way to deconstruct divisions, build community, justice, possibility and health.

Andy is a wonderful partner.  In ways that terrify me, our lives are coming together and I can foresee potentialities that in the past would have been impossible to imagine.