Alchemy

So we were having lunch at the food court down by one of the grocery stores we shop at. I had pulled in at one of the accessible tables, the kind where there is a chair removed to create a space for me to pull in. Joe carried the tray with the food. We were beside, a table between, a group of gay men about our age, maybe slightly younger. We took a few moments to get ourselves, our food and our groceries settled, and once in we began chatting about how we were going to organize the rest of the day. We had lots of small things to do and we wanted to ensure they all got done.

As we talked the chatter from the other table was punctuated with bursts of laughter. One of the men was telling a story from his high school years, a time where he was bullied fairly relentlessly because he had been discovered to be gay. The story he told, however, was one where he managed to get off a really good verbal shot at one of his tormentors. After they all laughed heartily at the story, one of them said, "Yeah, they're right, it does get better doesn't it?"

Just as we were finishing up, they began discussing someone, a mutual dislike - there is nothing more unifying - and one of them said, "He's such a fucking retard, just such a fucking retard." It then got worse, another started making a 'faux disabled' sound by trying to imitate hand movements and slurred, all tongue speech, that I've often heard and seen used in jokes mocking people with disabilities. I felt the floor open up underneath me. I felt my shoulders crushed by this boulder of responsibility which settled immediately on me. I should DO something, SAY something.

But I couldn't speak. I was so horribly, horribly disappointed. I knew that if I spoke I'd just start crying. I looked at Joe, he looked at me. I think he understood exactly what I was feeling so he just said, gently, "Let's go home." And we did.

I was telling someone about this and they said, oddly I thought, "It sounds like you expect more of gay people than of straight people, is that fair? After all, isn't everyone susceptible to bias and prejudice?" I suppose, on one hand, my friend is right. But, I don't understand, and have trouble forgiving, people who have experienced bullying becoming a bully. I don't understand, and have trouble reconciling, the experiencing of hurtful words with the subsequent use of hurtful words. I don't understand, and have trouble figuring, how "It gets better" gets tagged with "for me, and fuck anyone else."

You all know that I am gay, I'm not shy about my sexuality and I've been out for a very long time. I was out when it was dangerous to be out. I was out during the time where people wouldn't hire me because I was out. Joe and I were denied apartments because we were out. Joe was hit by a rock thrown at us during one of the first gay pride marches held in this city. We are not unique for gay men of our era. In fact in many cities, in many countries, presently, anyone who is part of the LGBTQ+ community is subject to horrible violence, oppression, torture and death. I know that. We all know that. The men at the table know that.

They say that "experience is a teacher," and I believe that wholeheartedly ... experience, for those of us who are different, often uses rejection as a curriculum, pain as the subject and fear is the answer to every question on the exam. So what's to be learned? What's the point of having an experience, what's the point of going through hell, if it isn't to be made different? The different should be different. The different should push aside society's demand that we all torment those who don't quite fit.

We all know the story at the source of the quote, "Let he who is without sin cast the first stone." I'd like to, with humility, suggest that a corollary might be, "Let he who has experienced bruising refuse to, ever, pick up a stone."  Kindness, the drive for intentional kindness, it seems to me should be the goal of everyone who has experienced an unkind world.

Do I hold gay people to a higher standard? I don't know. Gay people aren't the only to have been teased, to suffer discrimination. Heaven knows that being targeted by society, tormented by systems which reward sameness and subjected to the taunts of bullies, are outrageously common experiences. When I ask those attending my lecture on bullying to put their hands up if they've ever been teased or bullied. In every case, every time, every one puts their hands up.

So explain to me:

Why is there bullying?

Why is there name calling?

Why is there purposeful hurt?

If the experience of "other" is ubiquitous shouldn't, therefore kindness have equal footing. If we've all been at the same brutal school, if we've all had words slam into the soft flesh of the soul, if we've all felt brutally betrayed when we've received hurt instead of understanding ~ where is the evidence that we paid attention, that we understood, that we have learned the science of alchemy, gold from lead isn't anywhere near as powerful a thing as kindness from intolerance.

I truly believe that if anyone every really 'looks in' even for a moment, they will never 'look out' at the world the same way again. If we ever truly examine the pain that we suffered at the hands of others, our hands would become calloused by the work of kindness, and tolerance, and acceptance.

If we ever ...

"It gets better!" only means anything if it's an inclusive statement. If even one person, one kind of person, is excluded then it's a lie.

A lie.

But, and it's a big but, it could be true.

It could be.

Should be.

True.

Free Hand

Still working on the blog about Saturday ...  until then ...

Marissa and the girls came down for a visit on Sunday and, after the girls got their hair done, we went for lunch at Milestones. After placing our orders, Ruby opened the small set of crayons, took a piece of paper and went to work. She worked diligently. We all glanced over and saw that she had drawn a big heart. Cute. I didn't notice anything again until she had taken the yellow daffodil that she was wearing, the 'support cancer research' one, off her blouse and pushed the pin through the paper.

Then I think she startled all of us by asking, "How do you spell 'bullying'?"

Whaaa? Where did that come from?

So we helped her sound out the word and she matched the sound with the letter and then dutifully wrote it down. This was an odd coincidence because when we were heading over to the salon I had talked to Marissa about training in two different schools on Friday. I had mentioned that just walking into a school, no matter how different it might be from the one I attended, memories come flooding back. Not all of them good, of course. We agreed that schools always feel like schools.

There was no talk about bullying at all, just an oblique reference to what schools often are and to the memories that stay stuck forever in one's mind. And yet, only an hour later, a little kid, fresh and new to school, is sitting at a table, concentrating as hard as she can to make an anti-bullying poster.

We asked her a few questions about her school and if they were talking about bullying there. She answered distractedly, paying most attention to colouring green around the bottom. Finally I asked her what bullying meant. She said simply, "it's when people are rude." That may sound simple, but to Ruby, "rude" is a very big deal and it's behaviour she doesn't understand.

So, for today, I'm sharing a drawing done, out of the blue, by a little girl concerned about how people treat each other ....

I'd like to say, at the risk of seeming completely cutesy, I am really, really, pleased that Ruby had to ask how to spell "bullying" but she knew how to spell "love." I wish that were true for every child, of every age, in every place.

Moleskine and Me

I got up yesterday morning and prepared myself to write a blog. I had a steaming cup of tea beside me, I had my fingers on the keyboard, I had the cursor up in the left corner of the screen, and then, I sat. I blinked away the harsh white light a few times. I ran through things in my mind. Then, remarkably, I clicked off Blogger and went about my day. I've posted almost every day since I started this blog and I felt giddy at the thought of skipping out for a day. My glee wasn't about deeking out of a responsibility, it was because, as I ran around the aisle of my mind, I couldn't find a single thing that I wanted to say or anything that I felt needed to be said. I was empty of ideas. This is a rare thing.

We went about our day. Haircuts first thing. I take maybe five or six minutes, I'm not styled, I'm mowed. Joe takes longer so I went shopping for twenty minutes and got back exactly when he was done. We dropped my purchases off at home and then went to pick up what we needed to make a veggie version of shepherd's pie. Our recipe simply substitutes the lamb (they kill baby sheep!) with Quorn. We got home, after having stopped for lunch, and set about making a giant pie. We've got a busy week and we wanted to make enough so that we don't have to cook for a few days.

That done Joe read a bit while I planned for next Wednesday. I'm shooting three pilots, of about five minutes each, for a proposed web based television programme about living with a disability. I had discussed the three segments with the producer and then realized, yesterday afternoon, I'd better prepare a bit for the day. Monday and Tuesday are riddled with responsibility, so now's the time to get ready. I sketched out each of the segments in my trusty Moleskine notebook. It was way fun. I did this while pushing away the thoughts that a fat, very fat, disabled man was maybe the most unlikely person to ever host a show on anything. It took some fortitude to finish doing it because a big part of my mind is calling out to me, "Don't set yourself up for failure or ridicule." But then, that was the same voice that told me not to get up in front of an audience to lecture so - hush.

Work done, Joe joined me in the front room to watch television and enjoy the rest of the day. It was, really, a fairly unremarkable day. Then, middle of watching Miss Fisher's Murder Mysteries, Joe paused the programme and said to me, "You did hear what those guys said at lunch today ...?" I told him that I did. "And are you going to write a blog about it?" he asked. I told him that I would but that it would take a bit of time.

And as you can see, I'm not done yet.

So, instead of leaving another day blank, I've written this. I've already received a few emails asking me if I'm fine. People worry if I miss a day or two. So, that's a tour of our day. I'm going back to work on what happened at lunch yesterday.

Oh, My, A Goal

Something I haven't told you about.

Several weeks ago, a few months maybe, one of the footrests on my manual chair broke. We thought that we might be able to get it fixed but the weld simply didn't hold. We tried to order one and found the process wildly difficult and the replacements incredibly expensive. I think it went on so long only because it went on so long. I mean when you deal with something on a day to day basis a lot of days can pass by without much notice.

When Joe and I were coming home through Buffalo we saw, off to the side of the road, a place that sold wheelchairs. On a spur of the moment decision we pulled off and Joe went in. I watched him as he walked through the store carrying the one good remaining footrest with him. A few moments later he was back in the car with a replacement. We both marvelled at how quickly and easily it was done. We were further shocked by the fact that the replacement piece was considerably cheaper than we'd expected to pay.

But, man, it's hard getting back into using the chair the way I used to use it. I found that with only support for one leg I could not push the chair any distance. Holding one leg up while pushing was just way too difficult. So, of course, I ended up getting pushed more and more often. I could do short bursts of distance but that's pretty much it.

Now, I'm able to push myself again but I've lost a lot of strength in my arms. I am now working on the motivation to NOT be pushed because I want to build up my stamina and my distance in the chair again. I used to be able to go long distances and up small inclines. No more. But my goal is to get back what I've lost.

I am a determined man.

At least I think I am.

But for some reason I'm finding it hard to get all excited about building up the endurance and capability again.

I figure if I state here, publicly, that my goal is to be back at full strength at the end of next month, then I might more likely do it.

So, yes, I'm using you.

Feel free to hold me accountable next month on the 31st.

Reclaiming History: Searching for Great-Aunt Sarah (a guest post)

Today's blog comes from Rachel Cohen-Rottenberg who writes an astonishing blog Disability and Representation where the original post appeared. Rachel has graciously allowed me to reprint the article here. I thought about Cousin Mattie the whole time I read this. 

In 2009, while searching Ancestry.com for new information to add to my family genealogy, I discovered the existence of a relative about whom no one in the family had ever spoken. She was my paternal grandfather’s younger sister (my father’s aunt), and her name was Sarah. During a search of census records, I learned that she had been a patient at the Massachusetts State Hospital in Canton, MA in 1920, when she was 11 years old, and at the Wrentham State School in 1930, when she was 21. In other words, she appeared to have resided in state institutions from the time she was a child.

My father’s family has a rather unusual last name, so when I came upon Sarah, I felt fairly certain that she was related to us. Because the state schools were often warehouses for people with physical and mental disabilities, I felt from the beginning that Sarah had been “disappeared” from the family because she had been disabled.

In the face of this attempt to erase her from memory, I began a quest to learn everything I could about Sarah and to bring her into the light of day.

I was saddened by everything I found.

Sarah’s father, apparently, was known as “vigorous, gregarious, a hard drinker and a gambler, and inclined to shirk family responsibilities.” Her mother, on the other hand, was described as “mentally incompetent, elusive, and uncooperative.” I’m not sure that Sarah’s mother was actually any of those things, since living with a hard drinker and gambler who chronically refused to take care of his family very likely explained how she presented to the rest of the world.

It’s clear that the family was desperately poor, as evidenced by their contact with various social service agencies throughout the 1920s, and by the placement of two of Sarah’s younger sisters with foster families during the 1930s. There were, in all, seven children who survived early childhood. Four others died very young. Sarah was the second eldest of the surviving children, having been born in 1908.

I soon found out that she was, indeed, physically disabled, and had been diagnosed with “congenital spastic paralysis,” now known as cerebral palsy, when she was very young. But even more interesting are the possible markers of autism: she was a nervous baby, cried continually, tore at her hair, scratched her face unmercifully, and first talked at 4 years of age.

In 1915, at the age of 7, Sarah was placed in a family home with another disabled child. In September of that year, she began in the first grade at the local public school.

In 1916, she was placed in a state home—the Massachusetts Hospital School in Canton, MA—because her foster mother could no longer afford to take care of her. A teacher at this school considered her to be “of slow mind, lacking in concentration, and having problems with attention.” (ADD, anyone?) In a painful example how easily disabled people are dismissed, it was suggested that Sarah be placed in a school for the feebleminded when she was older.

By 1920, the people at the Massachusetts Hospital School said that they could do no more for her. She was judged “not mentally competent” to compete with the children in her grade. It appears that she was placed in another family home before a space opened up for her at the Wrentham State School.

She entered the Wrentham State School in 1921, at the age of 12, with the hideous diagnosis of “moron.” As I look at a photograph of her taken around that time, I find myself amazed that anyone could have missed the focused, sad intelligence in her eyes. In fact, when I first saw the photograph, I burst into tears. She was the only person in the family whose eyes, whose facial expression, and whose look of anger and sadness at the insanities of the world reminded me so thoroughly of my own.

About 10,000 people were institutionalized at Wrentham during its history. Despite Sarah’s diagnosis, she was described as adapting herself very quickly to her surroundings, expressing herself relatively well, and displaying a full range of emotions. Apparently, she always tried to do her best and took pride in neat work—words that would have perfectly described me as a child. She was also a good singer—another trait that we share in common.

Unfortunately, Sarah began to fall apart in the late 1920s. She began to behave and talk in “peculiar” ways, becoming depressed and unhappy. She felt teased by her peers. She lost her appetite for food, and her behavior became disruptive. One can only guess at what she was going through. Had she been assaulted? Had she collapsed under the weight of chronic institutionalization? Had her longing for friends, family, and home finally become more than she could bear? We will never know.

She showed no evidence of being delusional and yet, when she left Wrentham in 1930 and entered the Foxborough State Hospital, she was given a diagnosis of “dementia praecox,” the now-defunct term for schizophrenia. It was certainly not unusual for autistic people, especially women, to be misdiagnosed with schizophrenia and other mental disorders, especially when the process of institutionalization itself created mental and sensory breakdowns. As a state mental institution, Foxborough was a dumping ground not just for physically and mentally disabled people, but also for poor non-disabled children and recalcitrant wives. In those days, it was not unusual for poor children to be placed in institutions, and for rich people to take them out and hire them as maids.

Sarah, however, never had this dubious opportunity. Instead, she entered the Foxborough State Hospital at the age of 21 and never came out. She died of tuberculosis of the lungs in 1934, when she was 25 years old. When I received a copy of her death certificate, I was horrified to learn that she had been ill with tuberculosis for ten months before she died. Ten months, suffering in hell with a wasting disease. It makes me physically sick to think about it.

Under most circumstances, the indignities visited upon the patients at Foxborough followed them into death. In general, the inmates (for that is what they were) were buried on hospital grounds, their graves marked not with their names, but with their patient numbers. As a result, if anyone in a later generation were to visit his or her deceased relative, it would be impossible to know where to look.

I was determined to honor Sarah by visiting her grave, and when I wrote to the state mental health agency to find out her patient number, I was surprised to learn that she had not been buried at Foxborough at all, but in the Arbeiter Ring (Workman’s Circle) cemetery in Boston. I have no idea who got her out of Foxborough to bury her properly, but I hope that the person is reaping untold benefits in heaven for this act of humanity.

There is a non-profit agency that oversees all the old Jewish cemeteries in Boston, so I wrote to them right away to see whether they would send me a photograph of Sarah’s grave. To my dismay, I learned that there was no grave marker at all.

So Bob and I decided to get Sarah a proper grave marker, which was placed this past fall. On the marker appear her name, her date of birth, her date of death, and my favorite line from Psalms: Those who sow in tears shall reap in joy.

I hope that she has found joy in the next world.

I hope that she feels the peace of knowing that she has the dignity of a marked grave.

I hope she knows that her picture has taken its place on our wall, along with those of our other ancestors.

I hope it heals her that I am telling her story and making sure that people remember the shame and injustice of what happened to her.

My Hebrew name is now “Rachel Batya bat Sarah Channa”—Rachel Batya, daughter of Sarah Hannah. I have taken Sarah as my spiritual mother. Every Friday night at our Shabbos table, I receive a blessing, and her name is blessed with mine. She never had a chance to have a child of her own, but in some way that I don’t entirely understand, I am her daughter. I am a disabled woman, born into the same family two generations later, and I have what she didn’t have. I have the power to stand up and say, “No more.”

No more dismissal. No more shame. No more isolation. No more disappearances. No more silence.

No more Aunt Sarahs.

Not now. Not ever.

© 2011-2012 by Rachel Cohen-Rottenberg

The Door Wars

It was silly. I knew it was silly. But I didn't care. Silly or not, I was going to win.

When we leave the apartment building, Joe opens one door, I open the other. My chair will fit through just one door but it's a tight fit and requires precise steering, it's easier to just push open one while going through the other. Just as I was about to let the door go, a woman, who lives in our building, was hurrying towards the door. I called out and told her that we would hold the door for her and, as a result, there was no need to rush. She hurried anyway and I noticed that she was heading towards me, not the entrance.

"Here, let me hold the door for you," she said.

"No," I said, being OUT, and not needing the door held, "go ahead in."

"No, no, I'll hold the door," she said not noticing that I was already OUT.

"I'm fine, go ahead in," I said, struggling to stay calm.

"NO!," she said, "I will help you, I don't need help."

"I don't need help right now either, I'm OUT, already, I'm holding the door for you as a neighbourly act." I said.

I'll stop there, but it didn't end there. It got into an actual argument with her refusing to enter and me refusing to let go of the door. I didn't want her to touch the door magically making it me getting help. Help that I didn't need and I didn't want because I was already OUT.

It was a struggle between two people, each trying to do something nice for someone else. "My life has become a sit com," I thought to myself. But. I didn't let go of the door.

In the end, I did win.

She went in.

But I also lost.

She went in really angry.

I wasn't angry, and I wasn't really regretful either. She wanted me to play helpless cripple and she wanted to begin her march to beatification.

Sometimes I simply can't be stuffed into the helpless role by even the nicest of bystanders, not only am I not helpless, I have the capacity and desire to help others too. Not just by what I do at work but by how I live my life.

All that means is that sometimes I want to hold the door.

I'm wondering if any of you get stubborn like I did yesterday ... I'm guessing this isn't an uncommon situation, but that's a guess, fill me in.

By George I Think He's Got It!!

For the most part I no longer write about my experiences with seating at events that Joe and I attend. It's hard to find something new to say about a topic that's grown old. We went on Sunday to see Salome at the Four Seasons Centre and a couple days before the performance we were called to be told that the seats that we purchased were no longer available, having been taken over by a sound board, so we were being moved,. The woman said that they could no longer fit a 'wheelchair' into the row. I'm beyond asking people to refer to me as a wheelchair user, or a customer in a wheelchair, so I let her go on.

She explained that we were being moved to a box and that we wouldn't be expected to pay the difference in the seating costs. Nice. I think she was surprised that I only thanked her for the information without giving her a burst of gratitude. As we have been to 5 events there and had the seating done incorrectly 3 of those times, all I felt was intense worry that we'd get there find no seat at all. They don't seem to understand that lost trust is, well, lost trust.

But I didn't write about it because I've told similar stories about theatres and concert halls and performance palaces any number of times. I chalked it up to another in the long line of 'shit it's hard to deal with you disabled people' experiences we have had. Though the seats were fine and the view was fine and Salome was appropriately naughty, the worry about seats gets wearisome to experience and tiresome to explain.

So when I heard that there were tickets going for last nights taping of George Stroumboulopoulos Tonight I emailed asking for tickets with little hope that I was in time to get seats and wondered if it would be done without some kind of rigourous interview and maybe require a letter from my doctor. I sent an email saying:

Hi, we'd like to attend the taping tomorrow (April 22) if possible. I am a wheelchair user, with a tall chair, and would like to be able to sit with my partner. Is that possible?

A few hours later I got an email back saying:

Hi Dave,

Absolutely!

OK. That was easy.

So we got to the show and watched the line up grow. We were across the hallway from the line up, Joe was able to sit there and wait. He's not good at standing long periods of time. The nice thing about accessible seating is that we don't have to worry about the seating lottery, our seats would be our seats, so no rush to the front of the line. Eventually we were checked in and the woman, surprisingly said nothing about me, the wheelchair, or special seating. She gave us the same spiel - go to the bathroom now because you won't be able to go once inside the studio - as she gave anyone else. Score one for inclusion. I particularly hate having to talk about my 'needs' in front of strangers when all I need is a freaking seat.

So far they're doing well.

We got up and in. All of us waited until everyone had been ushered up the elevators to the waiting area outside the studio. A few moments later Mr. Stroumboulopoulos came in to greet some of the audience members. We were first up as we were located right by where he entered. There was no rush to talk to the disabled guy, I was there, he came to talk. 

I'm no good at these situations. First, I get a bit starstruck, I really like George's (I've shaken his hand I'm guessing I can be informal) show and I admire what I know of him. So I said, tongue tripping over teeth, "I really like your show." He said, "Thank you," like he meant it and then wandered on. A few seconds later I realized that I had wanted to tell him about my experience in booking the seat and in getting into the show. He was busy talking to others, I screwed up my courage and rolled over to catch his eye. He nodded that he'd seen me and came over when he was finished.

I expressed my gratitude pleasure at the experience, saying, truthfully, that this wasn't typical. He then said something odd. He said that the accessibility of the show was intentional. He explained that they thought through the experience of people with disabilities and were determined to make it easy and pleasant.

Shit! 

That's all it takes?

I thanked him again and a few seconds later we were guided into our place, no muss, no fuss. We were lucky that the comedians on the panel were particularly funny and wonderfully diverse. The interview we saw was great to listen to and one of the questions brought out an answer that gave me a new way of thinking about something. In fact it's still rolling around in my head as I write this. Cool. I learned something new about myself. To me a good interview is when someone is asked questions that bring out answers that are deeply human. George (my old pal) does a good interview.

We left, toileted ourselves, and headed home.

It's odd to have a desire to write a blog about nothing happening. But for disabled people 'nothing happening' is entirely noteworthy.

So to Mr. Stroumboulopoulos and to his staff I hope you understand when I say ...

Thanks for nothing.

Wait For Dave

We were all at the door. The process of getting kids into coats and boots is surprisingly complex. There was hustle and bustle, there were sudden needs to go to the bathroom and heated discussions about taking stuffed toys along for the ride. But, in the end, kids were clothed and shod and the door opened. I am usually one of the first out, the door needs to be held for me - so I'm never last out the door. Ruby and Sadie were into the hall in an instant.

Sadie was beginning to head towards the elevator. It's a bit of a trek because we are at the end of the hallway. Ruby stopped Sadie saying, "Wait for Dave, he likes to race."

And it's true.

When the girls are here, we three race all the time. Them running pell mell to get to the elevator, to get to the door, to get to anywhere really. As I am a responsible adult, we never race where racing isn't safe. As they are responsible children, they don't either. But when we race, we race. I open up the power chair and zip as fast as I can, they both hunker down and RUN.

I never win.

Yet, I always win.

The older I get the more I care about my reputation, my legacy. I don't think it's uncommon to begin to wonder how one will be remembered.

As we all ran down the hallway, I thought, that the sentiment behind, "Wait for Dave, he likes to race" is as great a testiment to my character, my relationship with others, as I could wish.

The Better Way

I saw no fairy dust in the air.

I felt no breeze from angel wings.

I heard no gentle chorus of hallelujahs.

But maybe that was because of the noise and the crush of people around me. Maybe it was because I was distracted by my partial responsibility for two little girls who were travelling with us. But maybe, and most probably, it was because what happened wasn't magical at all. Maybe it was just that something possible but improbable happened - like the the million monkeys typing on a million typewriters just hit the final key on the entire works of Shakespeare.

We were waiting for the southbound subway at the stop near our home. The Yonge and Bloor stop is pretty much always busy, but it was particularly crowded because there had been problems on the southbound line and there were long delays. With every minute the crowd grew more closely packed. As a wheelchair user, these moments can cause me panic. When people wait, they become impatient. When people are impatient, they can direct extreme anger towards those of us who move differently. I was concerned.

Finally the subway came and it was packed already. We waited for people to stream off and then along with the crowd we surged forward, staying tightly together. My family pulled around me, almost protecting me from others as we got on the train. We were on. The doors closed. And then it started happening. Three people sitting on the bench marked with the wheelchair symbol, all at once, as if orchestrated by the same heart, began to get up. I thanked them and waved them back into their seats, I saw that if I could swing around and back into the space by the other door I would be displacing one person, not three. And, truth to tell, that's the best place for me because I have a grip to hold on to. I looked to the woman, who caught my glance. She said, 'Would you like to use this space?' I said that I would. She moved. I moved. I was in place and out of the way. All done with gentleness and generosity.

The girls love the subway because we always, no matter what, get on the first car so they can see out the front windows. I admit that I, too, like watching the train hurtle through the tunnels and I like seeing the upcoming stations looking like they are floating islands of light in a dark world. The windows were all occupied by families with children. Ruby and Sadie each stood on tiptoes trying to see. They were noticed by a man who was with his son.

Let me tell you about this man. When we got on the train I heard him say to his son, in response to what I don't know, 'Don't worry, if you get frightened I will pick you up and hold you safe.' His voice was gentle and loving. There was not even the slightest hint of 'boys shouldn't feel fear' ... 'what kind of sissy are you' ... 'man up bro'. Not the slightest. His son, in response to the offer, hugged his dad's leg and from then on bravely rode the train.

So, that man, noticed our two little girls straining to look. By then Mike had picked Sadie up so she could see, Ruby being taller was getting a bit of a view. The man then crouched down so that he'd be beside his son and out of Sadie's way. He and Mike exchanged a few friendly words. Sadie got a good view and when the son moved to be closer to his dad, Ruby did too.

A woman was juggling a baby who was fussing. It was obvious that she didn't want the baby to cry and bother other people. A woman stood up, gave her the seat, and said, "Let the baby cry if she needs to cry, that's what they do." We all nodded. Mom relaxed. The baby sensed calm and fell asleep. Mom wiped grateful tears from her eyes.

From Bloor down past Union and  up to Osgoode it was like that. It wasn't a moment, it was a collection of moments, enough moments to make an experience. People being kind to people. People considering people. People deciding to create a welcoming and hospitable world. The the TTC advertises itself as 'the better way' ... and today the passengers made that true.

I was dazed by the experience.

I was heartened by the presence of heart on a crowded and noisy subway.

I know I should just be grateful. But, in truth, I want more.

Queen's University

I was tired. I got into my housecoat, onto my chair and under my blanket. Then, suddenly and without warning, I was giving fashon lessons and tips to two young girls. Joe, being funny, said that it was like watching the queen mother, in royal robes, give sage advice to little princesses in waiting. Hmmmm. Mike, their dad, really wanted to take these pictures, to which I reluctanly agreed - I'm not much for having my picture taken

We had quite a day. A visit to the McMichael Gallery, lunch at Dave and Busters and then Ruby and her dad went off to the ROM for a dinosaur sleepover while Sadie had a popcorn party here watching favourite videos. She put her feet in the bowl of popcorn to discover if it would tickled - science requires answers - and then was suprised whe Joe and I were too full to eat any more popcorn.

Many extraordinary things happened today regarding my work about disability ... two really big things actually ... but when I came to write this blog. This is what I wanted to remember of the day. Play time, down time, with Ruby and Sadie. They love coming to our place and we love having them.

So for today, just a couple of pictures ... what we don't have a picture of is our tired old faces, after a day of fun and activities when the apartment is quite except for the faint snores of a child asleep. Why don't we have these pictures? Didn't have the energy to pick up the camera.

Like No One is Watching

We picked up the girls and their dad after work today and suddenly the vehicle was full of NOISE. Hugs were first on the list and both kids flew into the car to give me a big 'hello' hug - we hadn't seen them for a couple of weeks. The ride down was full of chatter and laughter and jokes about farts. We played 'who can spot the CN Tower first ... and everyone claimed to have won ... that debate went on for quite some time. By the time we pulled up, pretty much everyone was a bit tired.

The girls had brought a movie they wanted to watch ... I didn't catch the title ... but it involved a princess who was turned into a flying horse by an evil spell, her sister who was determined to break the spell AND save the kingdom ... of course there was the handsome dude who didn't get it, until the end when he realises that she was right all along and he never should have doubted the existence or power of a wand of light. Gripping stuff.

The movie, though, had some remarkable music. I think I remember seeing that the soundtrack was performed by the Czech Philharmonic Orchestra and featured music by Beethoven and Grieg. At one point when the music was lush and the story was slow, Ruby got up and started to dance to the music. Sadie was engrossed in a new game we had bought the girls and, though she had pleaded to watch the movie, never saw a frame. I was in my chair, in my housecoat, with a blanket over my legs. I had a cup of tea beside me which I was sipping on. I felt very grandmotherly!

Ruby turned to me, after a slightly off balance pirouette and asked, "Do you ever dance, just for fun?"

I joked, "I dance inside all the time."

"That means, No, right?" she asked, still swaying to the music.

I told her that she was probably right.

"You should dance more. It's fun." She advised me gravely.

And I should.

Should you?

First Stones

There is a phenomenon I don't understand.

It frightens me.

People put pictures of people on Facebook.

Then other people line up and say cruel things about them.

One was a picture of a large woman wearing tight bright clothing.

The captions said 'describe her in just one word'

And the words fell like acid rain ...

disgusting

horrible

puke-making

ugly

stupid

One was a picture of a young man with tattoos and piercings on his face.

Again we were asked to describe.

And the words like stones flew through the air.

omg!

hideous

why?

tragic

ridiculous

Why do people put pictures of people up just to be mocked?

What kind of society are we?

I noticed yesterday something odd.

One of the people who put up a picture of a person to be pilloried.

Ranted and raved about the bombing at Boston.

Violence is violence is violence.

Terrorism is terrorism is terrorism.

Purposeful hurt is purposeful hurt.

There will be those who say there is no comparing the two.

I say, until we compare the two and worry about both, neither will stop.

When Sexy is Sad ... I'm confused

I don't know how to take this.

HELP!!!

The lobby of the mall near me is a popular gathering spot for people with disabilities who are waiting for their WheelTrans ride. It's not uncommon to see one or two of the accessible buses parked outside loading passengers. Joe and I stop in the lobby too, every time we are leaving, to get our packages correctly balanced on my chair and to get ourselves dressed up for the winter cold.

Yesterday there was a fellow, in a snazzy wheelchair, that I'd not seen before. He was maybe twenty. He had a well trimmed black beard, black floppy hair, black horned rimmed glasses, and tight black jeans. His black pea coat was unbuttoned, as was his red plaid shirt underneath, chest hair peaked out from the collar of his shirt. He had ear buds in, white, which were attached to whatever earbuds are attached too, with white cords.

Oh, and he was movie star handsome.

As I was getting my hat and gloves on, and Joe was dealing with our Tesco bag full of beer, I noticed a group of young professional women standing together talking, one of them noticed the dude in the chair and soon they were all staring at him. He was obvious to the stare because something he was listening to had caught his attention - and like everyone who uses those damned listening thingys through ear buds - he became lost to the world. He moved his body slightly to the music. Not chair dancing or anything, just tiny movements to the beat of the music he listened to. Enough to be slightly sexy, not enough to be slightly silly.

One of the women said, her voice breaking, "Oh, that's just so sad!!" and she left the group clearly upset.

OK, help, what about that scene is sad???

Really, maybe I'm too long out of standing culture to get it now ... so help.

I'm Pro Crastination

I have to do something I don't want to do.

I have to do it now.

That's why I'm here writing this blog.

Inside I have this crushing anxiety about what I have to do.

I have to do it now.

That's why I'm here writing this blog.

I've put it off for exactly three working days.

That's five days of worry, counting the weekends.

That's why I'm here writing this blog.

Usually I don't procrastinate.

But I really, really, really don't want to do what I have to do.

That's why I'm here writing this blog.

When I was a kid, I was the one who jumped in to cold lake water first.

Just to get it over with. But I'm older now and because of that ...

That's why I'm here writing this blog.

OK.

Wish me well.

The blog is done and now I've got to find something else

To do instead of doing what I have to do.

Pushing Buttons

I was waiting for the elevator. I'm in a nice part of town. The stores are expensive, the air perfumed with the slight tang of money. We shop here because it's close and because we feel it's our duty to bring down the tone of places like this. I had pushed the up button and she had pushed the down button. I was heading to the shops upstairs, she was heading to the car park downstairs. When her elevator arrived first I joked, like I often do, "You won!" She laughed, a tinkle, and stepped on and said, "you'd think my being able to walk was winning enough." I sat there stunned watching the door slowly close. Suddenly I saw some fingers come round the end of the door, breaking it's motion and sending it back open.

She stood there and looked shell shocked. She started talking very quickly. Here's what I got from what she said ...

"I'm sorry.

I was just trying to make a joke and instead said something very stupid and very rude.

In my head it sounded like a good comeback.

Out loud it sounded insensitive and cruel.

I'm not that kind of person.

I was just trying to crack a joke.

Please.

If I made you feel badly, I'm sorry.

I don't think that walking is winning.

I see you here with your friend all the time, you always seem to be having fun.

I was just trying to be funny.

I'm not funny.

Oh. God."

I said, "It's OK. I've done that too said something meant to be funny that just didn't work. We all do it. We're good."

"Thank you. I really want to go now."

She let the door close, I got on the next one going up.

That apology took courage. She could have just let it go but chose not too. I'm impressed by people who know the power of a genuine 'I'm sorry I goofed up' .. she did.

Good on her.

Take Notes: There's a Quiz At the End!!

Several years ago George Hislop, who was a close friend, told me the difference between someone who was 'gay' and someone who was 'homosexual.' He said that a 'homosexual' was someone who had sex with others of the same gender but who did not identify with their sexuality, denied it as often and as loudly as they could and who did nothing to support the political movement regarding the rights for sexual minorities. A gay person, on the other hand, was someone who also had sex with others of the same gender but had an affiliation to the movement to the rights of others to love as they will that went beyond sex. Gay people, he said, identified with their sexuality and with their community. He saw the difference as the same as the difference between shade and sun.

I tell you this because I wonder if something the same exists within the disability community. I was in a store the other day, pushing myself around, looking at and shopping on my own. Joe was picking up some beer in the beer aisle, I was shopping for little keepsakes for the girls. A fellow came by in his wheelchair, he was a trim and very fit guy who manoeuvred both a cart and his chair with incredible skill. I, on the other hand, manage to put stuff in the bag behind my chair. He saw me, grinned, said a quick 'hello' and was gone. It was a brief interchange, one that kind of felt like an acknowledgement of brotherhood, of membership, of instant understanding. Nothing more, but it was nice. Really nice actually.

You see, I find, often that others who are wheelchair users, or others who use mobility devices actively avoid any kind of social contact with me at all. In the same way as many non-disabled people make me feel invisible, others with disabilities do the same. It hurts a bit more with done by someone who understands the effects of invisibility. I mentioned this once to someone who told me, quite coldly, that just because another person has a disability doesn't mean that we are automatically friends. I was a bit insulted that anyone would think that I meant that ... friendships don't come with a glance ... only acknowledgement does. Another person suggested that those who ignore me probably don't want others to think that they hang around with others with disabilities, that they have real friends, that they aren't part of some great disability ghetto. First, REAL friends ... what kind of shit is that? Secondly, is their worry about what others would think and indicator that they have others to impress? Others who's judgements they fear? Others who have instilled the idea of shame into the simple acknowledgement of disability in a public place?

Perhaps, and I'm only thinking out loud here, that we might have a similar distinction to make, one along the lines that George suggested. Is there a difference between those who have a disability and who identify as a disabled person, who see the disability community as an important one, who see activism as part of the mandate of politically aware disabled people ... and those who have a disability but deny it (I'm just like everyone else) or loathe it (I'd love to be anyone else but me) or refuse identification (I don't like to label myself disabled.) One makes community, one denies community, one accepts belonging, one longs to belong elsewhere.

I know that this is an awful lot to bring forward out of a simple,chance, encounter in a grocery store. But it's more that that single experience. It comes from a multitude of experiences. Like the woman I spoke to in Maryland who wanted to talk to me about accessibility in Toronto. When this happened it reminded me of being in a gay bar in Milwaukee and being asked how safe it was to be gay in Toronto. In both cases, it was more than strangers asking strangers tourist advice ... both were experiences of the best of community. Where strangers aren't so strange, and where questions are understood at the deepest level of their asking. Community is community but community requires an entrance fee - identity.

So do you all see a difference between the 'disabled, out, and proud' folks and the 'I don't consider myself disabled and would never, ever, want to hang with others who have disabilities' folks.

I do.

I'd like your opinion on this one ...

Hard Lessons and Grim Determination

It was good to get out of the car and move around. We've made stopping at Wegmans on our way home a bit of a tradition. It's nice to get out of the car, have lunch at their Market Cafe, and do a bit of shopping. It's only two hours, depending on border traffic of course, to home. We found ourselves a spot and chowed down, then it was off to shop.

We have a very particular shopping list. A few vegetarian items that aren't available in Canada top our most wanted list. I have a bag on the back of my chair to pick up things, Joe has the buggy. We split up and go on the hunt. For me, it's a nice time to get my body moving. It usually takes a few minutes to get into the right rhythm but, once there, I'm there. It's a large store and I see much of it.

This time we weren't very successful with what we were looking for but bought stuff we hadn't known we wanted or needed on the way in. From the cherry blossoms and 30 degree weather we'd come to cold, and wet, and rain. I pushed myself to the entrance and we decided to wait until Joe had loaded the car with groceries and then he cold give me a hand getting out to where we were parked.

When the door swung open, cold, damp, air came in and I felt a bit chilled. I hadn't worn a jacket because it was to be straight in, straight out. An older woman, noticing me sit there waiting, came over to me, purpose all over her face. I braced myself. It is said that the wheelchair is a magnet for social inappropriateness, and this has been my experience more than once.

She said, "They shouldn't have let you out without a coat." I bristled, the decision to not wear the sweater that Joe had offered me had been mine, AND, perhaps more importantly, no one had 'let me out.' Then she continued, "you speak up and tell people what you need. Trust me it took me a long time to find the courage to make my needs known. Don't you take as long as me. If you need a coat, ask for a coat." Then she looked at me seriously and grimly nodded her head. Work was done.

I went from being annoyed at her assumption to being kind of impressed with what she did. I'm guessing from what she said that her coming and speaking to me is a relatively new skill. I did see her work up to speaking to me and I did see the determination on her face. I'm guessing there was a journey there. While she mistook the situation and my need of her encouragement, in the end, I'm glad she did it and I hope she keeps doing it.

Someone exhorting another someone to speak up, giving testimony that it can be a hard learned skill, is an act of caring. In her case a kind of gruff caring done with grim purpose, but caring.

Post Script

On further reflection, though her advice did not fit that exact situations I was in, it fits in many other areas of my life. So, good on her.

Valley of the Dolls

This always happens.

We go home today. I am tired. I can't sleep. After 8 hotel beds, 6 lectures, 12 individual consultations and 12 days on the road along with countless hours of driving countless miles, I'm wiped. Yesterday crawling through traffic to get part way home, I crashed. When we got to the hotel it was my job to order in supper. It took three tries to get the number right, I accidentally called a woman who told me that if I couldn't dial a phone I shouldn't be allowed to use one. Um, sorry.

When I get tired like this, my disability moves much more to the foreground. Getting out of the car last night was difficult and the pain, which is always low level, turns up a notch. I know I am a wheelchair user and I know that I have need of a variety of adaptive devices, but it's only when exhaustion adds to the mix that I truly feel the extent of my disability. Joe does an amazing job of mitigating a lot of what I'd have to deal with, he is an expert in how to set things up in hotel room after hotel room to make things easier and more accessible for me. But when fatigue crashes in, nothing much can be done.

The transfer from the car to my chair last night, as I've mentioned, was very difficult and quite painful. I caught my face reflected in the car window as I turned around to sit in my chair and I looked really, really old. I noticed someone notice me and I knew what they saw and knew that they didn't know what they saw. They saw a tottering old man, moving with difficulty and moving with some pain. That's true. But what they really saw was a fellow who had worked a gruelling schedule, A fellow who, only hours before, was giving an animated lecture to an audience who were asking hard questions and engaging in good discussion. A fellow who was simply bushed.

I got into bed long before Joe did. I read maybe ten pages of my book and the light went off. I heard Joe moving around, checking out my Facebook page, answering emails, cursing under his breath the fact that the Internet here is lousy. I don't know what time he crawled into bed. I was long asleep by then. 

The night before going home I always have one of those sleeps that is interrupted by the excitement of the day yet to come. I love what I do and I love the opportunity to do it, but I also love going home. This morning I'll have to take my first pain pill of the trip, I only need them when I'm really tired, and I'm really tired.

Disability is an interesting thing to experience isn't it? It can be ever present but seldom noticed, but it can also rear it's head and say 'Yo, Dave, remember me?' 

Yeah, I remember.

The Butt of a Joke

We were sitting having lunch yesterday, I was tired. It was my fourth lecture in a row, we'd been in 6 hotels, travelled hundreds of miles. Joe and I had ordered in Chinese food the night before and it was the best we've had on the road - incredible. So we brought it with us to have left overs for lunch. Most people were gathered in the lunch area at the tables at the back of the room. We sat at a table close to where \I was presenting. We weren't being anti-social, the carpet was tough to move on and it would have been hard to get back there, the passageway to get there wasn't easy either. We went with the path of least resistance.

A few others were eating in that area. A lovely woman asked us if we liked jokes that said something. We did we told her. She asked, "What did one butt cheek say to the other?" She wanted us to guess so I guessed, "Stay over on your side," Joe had trouble making a guess so she let it go. Then she filled us in:

What did one butt cheek say to the other butt cheek?

If we work together we can stop this shit.

We laughed. Really laughed. It was funny. It was true. It was nice to experience a bit a humour at break time, a bit of humour when I was getting tired.

The restorative power of humour is an amazing thing isn't it.

She gifted me with a joke.

I've decided to pass it forward.

I'll Take Diversity, Alex

The other day we were watching Jeopardy on television and one of the contestants, during the discussion with Alex, made reference that made it clear that he was gay. It was just a nice little comment that came out naturally and signified how easy it is to come out naturally. Joe and I perked up and watched the show with just a little bit more interest. It was nice to see someone like us, not a movie star, not a celebrity, just a contestant on a game show.

Equally, I watched Testify (captions are available) on YouTube ... featuring the San Francisco Gay Men's choir, and in watching it saw a fellow, part of the choir, sitting in a wheelchair. Seeing him there meant so much to me. Seeing him simply be part of something so communal stirred my heart.

It is important to me to see human diversity on display. It is important to me because it makes me feel less alone. That young man on Jeopardy must have made a decision to answer the way he did ... he decided to be honest. I'm sure too that in making that decision he thought about the importance of honesty, of being there, of representing the breadth of diversity.

I believe that man sitting with the choir made a decision too. I spoke with a woman, once, who wrestled with  performing with her choir. She felt that the fat that she sat down 'ruined the line and the look' of the choir. She felt that maybe her desire to perform was selfish. But, in the end she made the decision because, simply, she WAS part of the choir. Her participation was truth. She also thought that maybe it would be important for parents of kids with disabilities to see her there, and that maybe it would be even more important for those with disabilities that she do what she does the way she does it.

For me, these two events mattered.

Therefore it mattered when I was told the other day, by a staff who worked at a venue that I spoke at, that she was shocked to come into a room and see a man in a wheelchair with the microphone. Shocked to see that hundreds of eyes looked in my direction. Her son is a wheelchair user. She told me that she was going home to tell him what she'd seen. She got teary eyed and rushed away from me.

But this post isn't about that moment.

This post is to remind us all how important it is that we live our lives openly, that we do what we do in full view. Every time you go shopping, every time you sit in a park and read, every time you are you doing what you are doing, you are demonstrating something important.

We have lives.

All of us.

Disability pride.

Like every kind of pride it is evidenced best not by the extraordinary accomplishments ...

but by living the ordinary ones with joy.

Transitions!

Right now Joe is busily packing suitcases and organizing all our stuff. I am catching up on work emails and finishing something that has today as a deadline. After today's lecture we head to another hotel in a different city. It's part of the routine of travel. I know to stay out of Joe's way, he's pleased that I'm distracted and not 'helping' him with suggestions. We're a well oiled machine.

After work yesterday we stopped at Safeway to pick up something to microwave for dinner. Our room has a tiny fridge and a tiny microwave and we like to make use of it. While in line I noticed that there was a sign up by the till. It wasn't for customers it was for staff. It said, "This till is the first to open and the last to close." Underneath the words was a little wheelchair symbol. I told that staff that I appreciated that the store thought about it, that it was nice that they actually structured accessibility. I mentioned that I was frustrated by going into stores where all the tills are open except the accessible one.

The clerk thanked me, he said, 'I don't think it's nice so much as it makes sense.'

And he's right of course.

It does make sense.

But then ... isn't it nice for something to make sense every  now and them.

Oh .. oh ... it's time for Joe to pack up the computer. It's the last thing to be packed because it keeps me tucked away and busy (and quite) as Joe does what he needs to do. I see that the suitcases are all stacked and ready to go out to the car. I see that the room is all straightened out (Joe doesn't want the cleaning staff to think we were messy) and I see I'm next to go. So, the computer stays open until the very last, it's nice for me, but it's also what make sense.

Well, three more lectures, three more sleeps, and we'll be home!!

Family Equals Family

On Sunday we had lunch in a Mexican restaurant not far from our hotel. We were seated and had ordered when a large extended family arrived. It was a cheery and welcoming place and the waitstaff pulled together to pull tables together so that all could be seated. I heard one of them say that there were four more people yet to come and the staff ensured that there were enough chairs at the table. They all chatted, clearly catching up with each other, they laughed, they poked fun at each other, they were, clearly, a loving family.

When the others arrived there was a complete shift, not in mood, not in spirit, not in noise level but suddenly they were all, ALL, signing. The family that arrived had two daughters. One was about 4 and the other maybe 7 or 8. The older child was excited to see the family and her signs flew so fast as to blur - an older woman, grandmotherly, signed while speaking asking her to slow down just a wee bit. They all laughed at the  exaggerated shrug the little girl gave.

Through the entire lunch, at least until we left, people spoke and signed both. The addition of the signing to the conversation seemed as natural as could be. The girls little sister wasn't far behind in her use of sign and she took to it as naturally as she did speech. This was a family to be reckoned with, this was a family who had no room for exclusion.

When the waitress came to take the order she went around the table, when she came to the child who as deaf she took her cue from all the others. She spoke right to the child, her father interpreted the child's order and that was that. It was a complete demonstration of what family could be and should be. Aunts and uncles, grandparents all, had bothered to learn a new way of communicating to ensure that a lovely little girl felt embraced by their love.

Inclusion begins, like everything else, at home.

Welcomed

Joe and I pulled off the road, after driving for several hours, to grab some lunch. I use the GPS to find a mall near the road because we can be assured of finding somewhere accessible to eat. I miss the days of pulling over at a local diner - we like the flavour of the atmosphere as well as the food in small local places - but the chances of being able to get in are fairly small, and finding one we can is time consuming. The mall was huge and we went in Entrance 6!

First we found the washroom, we are both over 60, this is always the first thing we do at any place we stop. Then we toured the food court. For some reason we both found the noise completely overwhelming so we headed to find a restaurant restaurant. Just outside the door we entered was a California Pizza Kitchen. Neither of us wanted pizza but we stopped to check the menu and found it wonderfully varied with a lot of vegetarian options. in we went.

The host greeted us with a bright smile. When informed the size of our party she smiled and asked us to follow her. We rounded a corner and she led us to a table. After handing us our menu she told us who our server would be and left us to consider what we wanted.

This is a highly typical scene, certainly no reason for a blog post. But there's something I haven't told you.

Joe and I travel a lot, as you all know. We eat in a lot of restaurants. The reason we never go out for dinner in Toronto is because when at home we cook - we have no desire for restaurant food at all. We've been embarrassed when people come to the city to visit us and ask us for recommendations for good restaurants and we don't really know any - it's not something we do at home.

Anyways ... we eat at a lot of restaurants.

Here's what usually happens.

We are guided to a table, the host asks which chair we'd like to have removed and then, usually with a lot of fanfare, a chair is moved. Sometimes there's a bit of drama as the host looks for a place to put the chair. Often it seems like a LOT of bother. I've gotten used to this. In fact I couldn't imagine it different in any way.

Until yesterday at California Pizza Kitchen.

We rounded the corner and a table was set for four, but there were only three chairs. The space that was most accessible to the aisle we'd gone through wasn't there. I pulled into place without any muss, any fuss or any drama. It was astonishingly easy. Joe noticed this to because he said, before I could say anything, 'Well, wasn't that easy?'

And it was.

It was welcoming too.

I don't know if this was accident or design. Joe and I fell into conversation over lunch and I simply forgot to ask the waiter if this was done purposely or not. A few miles from the restaurant I realized that I should have thanked them, should have made note of it.

I wanted to tell them that it was nice to be expected.

It was nice not to be a surprise to be accommodated.

It was nice to feel welcome and wanted.

Finally, a place at the table.

The Princess and the Pee

Lecture done, we hopped in the car and headed to our next destination. It's a long drive so we had booked to stay at a hotel in a town just on top of New York City, it cuts today's drive down to five hours. It's a lovely hotel which we managed to get for an amazing rate. The lobby was noisy and at check in the clerk told me that they were hosting a big convention attended by 'sleep disorder doctors and specialists'. They are a noisy crowd. They stay up late too. Neither of us worried much about sleeping because we were both tired.

We ordered room service, we watched a bit of television, we checked the blog and Facebook and we generally relaxed. Both of us were pleased with the day. The audience had been warm and receptive and our hosts welcoming and helpful. It was a terrific experience, but adding a several hour drive on top of a full day of work made us fairly droopy.

When it came to bedtime I faced an issue I've never had before. I couldn't get into the bed. It was So incredibly ...

H

I

G

H

I tried once. I tried twice. Then I stood there looking at it feeling like Moses looking at a promised land that would not be his. Joe, at this point hadn't noticed because he was busy reading comments from yesterday. I didn't want to ask for his help but I didn't know what to do. I told him my problem. He turned and we both realized that, with him sitting in the wheelchair the bed was level with his shoulder. I could see that suddenly he was worried about getting in himself. 

|I tried a third time.

I tried a fourth.

I couldn't even get my knee on the damned thing. Then I tried sitting on it to swing around. Nope, I knew I'd slide right off. Joe offered to stand ready and when I swung my leg up he'd grab it and shove it further up. I could feel the groin injury as he described this complicated move. We gave that idea up as both undignified and dangerous.

Finally I noticed that the couch in the room had removable cushions. We got them off, made a stair and, suddenly I was on the bed.

I lay there for about five minutes.

Joe went back to the computer.

"Joe," I called to him, "I forgot to go pee."

Concrete Prejudice? ... You Decide

I was in bed, reading. Joe called to me about a picture he'd seen on Facebook. He described it to me and said that he was horrified by what he saw. This morning when sitting down to go on line, I found piece of paper with notations about how to find the image he'd seen. Joe doesn't usually do this kind of thing so I knew it was something that he really wanted me to see. Even though he had described it to me, nothing could have prepared me for seeing the actual picture. I found it distressing. I found it hurtful. I found it deeply frightening.

Most of the comments, and I only read ten or twelve went on about how beautiful it was and several quoted biblical verses. None said, 'Hey wait, what is this saying.'

Could it be saying:

Well, his horrible life as a disabled child is over and how he is whole in God's kingdom.

And if it's saying that, is it also saying:\
\
This kid, and kids like him, are better off dead.

Could it be saying:

Freedom can't be had in a wheelchair.

Could it be saying:

God bars disabled people from entry, so do some magic to get him through the door.

Could it be saying:

The child is a mistake, death will fix that mistake.

Could it be saying:

In death we finally have the child we wanted all along.

Could it be saying those things?

And here I thought we were making progress. I thought that people were coming to understand that we, as disabled people could lives lives of value and lives of JOY. I thought that people were coming to see us as whole NOW. I thought that people were coming to see the wheelchair as a symbol of transport, of independence. I thought that we were coming to the point where we might even think that heaven would be ramped.

But this picture, and the reaction to it, tells me that, maybe not. Maybe those people who I interact with, who seem to accept me and my life and my contributions, maybe they think that deep inside I desire death to release me from what medicine could not. Maybe those people who celebrate joy with me, the many joys of my life, maybe the do so with a sense of pity, maybe they are thinking ... ah but the joy he will have when finally this life is over and he's freed from the bondage of his existence.

This picture means a lot to many who see it.

It means a lot to me too, and it scares the shit out of me.

Prejudice in concrete and steel.

I am desperate to hear your opinion.

Computer Goes on Strike

What an evening, our new computer simply refused to work. I spent all night trying different things to get it up and working. I took out the battery, I turned it off and then on again. Nothing would work. Couldn't do today's blog, last nights emails, anything on facebook. Nothing.

So I got up this morning pushed a couple of buttons, got the computer to scan itself, managed to get on briefly. I don't know if this is a permanent solution or if it's a lucky chance. So, no time to write today and fair warning that my blogging might be very sporatic as we are travelling A LOT and there won't be much time for blogging ... I don't like 'lobby writing.' I love the fact that hotels have computers available but I can't write with so much activity around me.

Anyways, if I'm here tomorrow, what I did today worked.

Gata run!

On the ...

Sidelined (Verb) to remove from the center of activity or attention.

I came home from the movies and looked this word up.

We travel differently than we used to, we leave a day early, plan a day of rest before starting, We rush less, we plan for fun. It's nice this getting older thing. So today we had off and we decided to go to the movies at a theatre across from our hotel. It's a nice place and it's quite accessible. The best thing, though, is that they've got a lot of choice for accessible seating. It's one of the few theatres that I go to where they have spaces in the center of a row. I love looking at the screen head on. It's a rare experience for me and I love it.

I'm used to being on the end of rows, tacked on, and being required to watch the show from the edge of the theatre. This is true for movies and live performances. I didn't really think about it much, until today, I spent most of my time with that gratitude that I know I should have - simply grateful fore being able to get in and for having a space. I'd been warned about this by an elder in the disability community, he told me, one day in Scotland, to never be grateful for what should be expected. Good advice, but advice to follow. I do feel grateful and I'm kind of punished if I'm not.

But today, sitting in the center of the theater, looking dead on at the screen. I thought about the experience that we have, often, as disabled people of being sidelined. It's a verb, not a state of being. Its something done, it's an activity performed ... someone actively sidelines another someone. This was a thought that has been long in coming to me. I've thought about purposeful exclusion before ... I've written a blog or two about it. It's clear that some things are designed, purposefully to deny access. People will debate me about this, but I'm sorry, they debate from the point of view of 'I can get in and you are just angry that you can't.' Um, yeah.

A trip or two ago, Joe and I pulled of the road to go into a restaurant.. We got in and just inside the door, just on the other side of the 'please let us seat you' sign, was two steps down into the restaurant. They had disabled parking, an automatic door, and two steps into the restaurant. I complained about it. They said that 'that's just the way it was designed.' I got that. What they didn't get was that the person who designed it, the person who approved it, and the person who gave the restaurant their license active discriminated against people with disabilities. I asked why they didn't put a sign over their door saying, WE DON'T SERVE DISABLED PEOPLE. Or, they could make it even clearer, because after all they are only barring those who can't use the stairs, put a red slash through the wheelchair guy and put it outside their door. They said, outrageously, with a straight face. "We don't discriminate against any group."

I freaking give! Disabled people may experience the only form of active discrimination, from public places, from employment and from education - by accident not design. Sorry this school isn't accessible but that's the way it is.f

Sitting at the end of the row to watch The Wizard of Oz meant that I didn't get to see about an eighth of the stage.. But I sat there, not realizing I'd been sidelined, grateful that I could be there with the kids. I loved watching them watch the play.

Thing about getting something once, like a good view of the screen, it is difficult to enjoy seeing it any other way. I will go to movies, I will sit on the sidelines just as I have before. But now it will be different. I will recognize that I'm sitting on the margins of the theatre .. sidelined. 

Not now, but when it bugs me too much, I'm going to have a think about it ... maybe there's something to be done here.

First comes realization ...

The Me in Social MEdia - Service Support and Success April Newsletter Is Out

This months issue of the Service, Support and Success: the Direct Support Worker Newsletter, written by Donna Lee, is about supporting people with disabilities who use, or want to use, social media. If you want to subscribe, or if for some reason you didn't get this month's newsletter, please contact me at dhingsburger@vitacls.org (this is a work email so no persona emails please).

Feeling Silly After a Long Sit

I know a study isn't conclusive with a small sample size. I know that, yet in my head I have determined that thirty-something, slightly less than chunky, men in Albany, NY are the nicest people. Joe and I stopped to grab lunch at a mall where they have a Johnny Rockets because be both felt like having one of their veggie burgers. We parked and headed towards the mall door. A man, fitting the description above, saw us coming and he went in the first set of doors and pushed the button for us to get in, then he did the same on the second set of doors. He said, smiling, "the buttons aren't working from the other side." We thanked him and he chatted with us a bit as we walked towards the junction, where he turned left, we turned right.

We'd been on the road for a very long time and it was time to 'e-liminate' (it reads less intimate if it looks like it's done electronically). Joe held the bathroom door open and I pushed towards the accessible stall. As I did so someone came out of the other stall. I tried the door to 'my' stall and it was locked. The guy who'd gone in must have done so just before I came in, he opened the door to see if I was a wheelchair user, saw that I was and vacated the stall. He explained, needlessly, that the other one had been taken. He saw it was free and slipped in there.

Gobsmacked. Absolutely gobsmacked.

After lunch I headed into Macy's to shop and Joe went to get the car. I was trying to get through an area where they'd left just it just a bit tight. Another fellow, same age range, came over and asked (ASKED) if it would be helpful for him to pull the rack over a few inches. These were the kinds of things designed to be pushed and pulled about, I told him that it would be a tremendous help. He moved it, I thanked him, he nodded in response and headed off.

So three out of three situations where these guys simply helped out, acted courteously, made my day just a bit easier. They were friendly without being intrusive. The one fellow asked before helping ... and though the other didn't ask, it wasn't a situation where that was necessary. How incredibly nice. I'm constantly reminded how easy it is to make a difference in someone's day.

All three guys were about the same age.

All three guys were a little thick around the middle.

It's a small sample ... but I have determined that slightly less than chunky guys in Albany are nice.

Albany ... maybe the meaning behind the name is ... "place where we help a brother out." Probably not, but in my mind, it does.

A Blog About Blogging

After some of the emails I've received over the past several weeks and months, I feel a need to write a blog about blogging. When I go back to the reason I started this blog, in fact further than that, back to when I considered starting a blog I remember thinking about what this would mean to my life. I recognize now, I had no idea. But back to how it began. My friend Belinda was the first person to talk to me about blogging. It seemed so exotic back then, I began following her blog and then reading other blogs about the disability experience. I found voices that, until then, I'm not really heard before, I found a community of bloggers that I wanted to be a part of ... and therefore decided to start my blog. I called the blog, 'Chewing the Fat' and, in those early days, I relied heavily on Belinda and her assistance. I dubbed her the 'blog princess' because she was a ready and able guide for me.

I wanted to write a blog about my experiences both as a newly disabled man as well as as a person who works in the 'disability industry.' As I was experiencing my world in an entirely different way, I wanted some way to document, for myself, and hopefully others, what that journey was like. I was surprised to find, that within a short period of time, I had readers, a community of commenters, and I felt that I was part of the growing disability presence on the web. In short I loved it. I had made the determination back then that I would blog for a year and then move on to other ways of expressing myself, other ways of being part of the community to which I now belonged. Obviously, that didn't happen, I'm still here, years later.

From the outset, from the absolute get-go, this blog was intentionally, a personal blog. I resisted all urges to make it anything more than that. I have been pressured, sometimes almost forcibly, to carry advertising or to promote various causes, or to write on every major disability news story. I write what I want to write, it's a daily blog so that means that I need to draw on day to day experiences. Most often I try to put these things in a disability context, most often, but not always. Sometimes I write about things that I'm thinking or feeling, sometimes I write about things from my past - a past wherein I was different but not disabled, sometimes I write about who I am as a gay person, or as a person of faith, or as someone who likes pie. It's a personal blog after all.

However, it seems that there are those who relate to me, not as a person, but as an entity, like I've stopped being 'Dave Hingsburger - the person' and become 'Dave Hingsburger - the commodity.' That's not expressed well, I know, but I don't know how else to say it. For those who see me more as an employee of the giant disability movement, I am held to extremely high standards and there are proscriptions put on what i should and should not write about. I am at the point that I grit my teeth if I'm going to write a post with gay content, I near get the vapours when I feel called to write about faith issues, I know, without failing that when I do those things I will get letters telling me that what I've written is 'inappropriate for a public blog.' I will get advice that sounds threatening, that I will lose my readership, that am endangering my reputation, that 'people don't come to this blog for that kind of thing.' Sometimes those letters are a bit frightening because of the intensity of the opinion. I am blasted for writing about faith by those who don't have faith, I am exhorted to leave my sexuality out of it by those who do.

And yet, this has always been, intentionally, a personal blog, a personal journal. I share the pages of that journal for those who wish to read. I don't charge a subscription fee, I allow my blog posts to be published and republished in newsletters or on other blog pages, even sometimes in journals and newspapers - without charge or without financial gain of any kind. I don't ask for donations, I don't have a wish list of gifts that people can send me (although I have received, on occasion cards and, maybe twice, small gifts from readers - lovely things that arrive out of the blue),    I don't take any kind of cut from anyone. I wanted this to simply be mine and simply be a place where I can be who I am and write what I want.

It is interesting that those who write me don't often comment on various blogs, their letters always seem to presume a relationship with me that they do not have, that they are writing me because they are concerned about me and want to be a guide for me, that they are expressing concerns that my voice will be muted. I write every person back, I try to be respectful in my tone and in the content. I let them know that my voice comes from me, all of me, not part of me. That my history as a gay person and my experiences of discrimination and of oppression informs my opinions and world view more than anything else in my life. That my faith, the comfort I receive from those moments of silence and communion, give me the space to both reflect on my life and to challenge my life. Faith, sought only for confirmation, to me, is suspect, faith that challenges assumptions and demands growth, however, is valuable. To me, these things matter, so as someone writing a personal blog, they will both be here.

I have received these emails occasionally over the years. In the last year or so, they have become tiresomely frequent. I am always taken aback by the anger, and sometimes almost hatred, that lurks behind them. I am writing this now because it was only a few hours ago that I recognized that what was happening was a kind of bullying that I find unacceptable. When I was in high school I was bullied because I wasn't quite what people thought I should be. Now, again, I am being bullied because I'm not quite who people think I should be. It wasn't acceptable then, and it's not acceptable now.

A few weeks ago, I found myself starting to freeze when I came to writing a blog. I was beginning to fear what would result if I wrote about this or that, if I expressed myself honestly. I had things I wanted to say but I found myself editing myself even before writing a single word. Suddenly I was writing for the wrong reasons, I was writing for a 'readership with expectatioins' rather than writing a personal journal and inviting people to read if they so choose. For the most part I think I've managed to write what I've wanted to write, but there was a kind of dread in pushing the 'publish' button.

The point of today's blog is to remind you all, and I know that I've got some of the best and most supportive readers that a blogger could want, that this is a personal blog. I value your opinions on what I write, I find that my comment section is often more interesting that what I write here on the blog itself. I value you all. I want to get back to valuing myself and my life and my voice. I'm going to attempt to push aside the fears that fill me when I sit down to write something here. I don't think that you'll notice much of a difference in content, but I want to experience a difference in writing. I want it to be a joyous, or a thoughtful, experience - not one that frightens me.

I apologize for writing a long blog about blogging ... all the experts say not to do this ... but to hell with the experts, this is my blog about my life and therefore it's my choice.

My choice.