Thursday, February 28, 2013

From Bad To Worse

I was waiting to be served soup and had decided to ask for salad as well. As soup was being poured, before the salad got underway, I got some very serious negative vibes from the server. His displeasure in serving me grew ever more obvious and, finally, in frustration, I took the soup and told him to skip the salad. The woman standing beside me, being served by the other fellow there, was an employee in the same building where the lunch counter was. She could see I was upset.

She scooted up beside me as I waited at the till to pay, she said, with a friendly smile, "Don't worry about him, he is just really uncomfortable around people with disabilities." She was charm itself. Her smile froze on her face as she saw the thunder forming on mine.

It took a great deal of self control for this not to become an out and out scene.

He pissed me off.

She enraged me.

He was a bigot.

She wanted to make that fact acceptable to me.

What the hell was I supposed to say, "Oh, well, that's OK then" or maybe, "That's OK, I certainly understand why he'd hate us cripples."

Really, what response did she expect.

Oh, don't worry, she's just a bit racist.

Oh, never you mind he's a tad misogynist.

Really, really ...REALLY??

I told her the truth. I told her that what she said made the situation worse. Here I was just thinking that he was a garden variety jerk and now I find out that his behaviour was actually targeted at me for being who I am. I asked her if she understood that.

She went from charming to, um, less so.

She was only trying to help.

If you are wondering if a letter of complaint has been written and sent.

That would be a YES.

Wednesday, February 27, 2013

Hello, Hello, Teachers Take Note

A Note To Teachers About to Go on a Field Trip:

Field trips are great opportunities to get kids out of the school and into the world. When I worked as a classroom aide years ago, I got to go to the theatre, to the movies, to the courthouse, to the museum and to art installations. I loved those days. I worked with teens with disabilities and went to provide whatever support was needed. I enjoyed it. The kids I worked with did too ... except back in those days getting in to places was a lot more difficult than it is now. The field trips gave all the students the opportunity to see things that are only discussed in the classroom.

What students who are out to see things forget seems to be what teachers seem to forget too ... that they are also seen and heard. Their behaviour is noticed. They are not invisible and their actions have consequences.

Joe and I went to the museum today for a few minutes to pick up a brochure we needed. We went in for a quick look in the gem room, which is an amazing place to spend some time. The main foyer was full of students, all in their early teens. I tense up around large groups of kids. I know that most of them are great kids but those that aren't aren't. I am fat. I am a wheelchair user. I am the perfect target for even those with poor aim.

That a teacher can't recognise what a risky situation is and react to it surprises me. It seems that they are just trying to get the kids from one place to another that they forget that while they have a responsibility to the students they also have a responsibility to the museum and to the other patrons there.

Our timing was terrible because we had to stop as the group poured up a set of stairs and headed by us in a long stream. We had to stop and wait for them to file by me. The 'pig' noises were one thing, the 'Whoa man, look at the fat guy,' was another but the outrageous behaviour, obvious to all in the area, a few other people stopped to wait, coming from the other side, looked at me with sympathy - and I think with a sense of gratitude that was a strong enough magnet to pull attention away from them. But the supervisors were oblivious, I think purposely so.

So to teachers.

If you've been teaching for more than 15 seconds you will be able to do a risk analysis for rude and immature behaviour when in the community. Risk situations should be responded to properly. Maybe do the following four things:

1) outline expectations of behaviour before leaving, places should not become unsafe because you are taking your class there

2) plan with your other chaperones for strategies to deal with high risk situations and be ready to intervene

3) don't be afraid to use your authority in public, it isn't shaming to call someone on shaming another

4) be unafraid of high expectations for your students

On our way out of the gem gallery we were on the second floor of the rotunda and Joe looked down and said, "Let's wait for a few seconds." He then told me that another group of students were filing into one of the rooms below. I refused to wait. I have a right to expect to be safe in public places. I rode down with anxiety in my throat. They were all gone by the time the elevator doors open. I was relieved.

It shouldn't be chance that keeps me safe, it should be your preparation and your supervision.

It should be.

But it hasn't happened yet.

Tuesday, February 26, 2013

The View from Here

We've made a slight change in our apartment. Like everyone else, we have our own places and our own spaces. I always sleep on my side of the bed. Joe always sits in his chair. I always chop the vegetables on my part of the counter. Joe has laid claim to the space between the stove and the fridge. None of this was discussed. No treaties were drawn up. No lawyer brokered the deal. It just kind of happened. So, making a change to all of this was kind of monumental. A tempest in a teapot is still a tempest.

So, now I'm sitting in a slightly different place in the front room and Joe is sitting in a very different place. There are reasons behind this but they would be both complicated and boring to explain. We made the shift two days ago. And we both feel like we've moved half way cross the world. The living room just looks different, completely different. Even though everything is in the same place as it was before, the change in angle, the change in perspective, literally, throws different light on everything. The apartment hasn't changed but my view of it has.

There is a small knickknack on the mantle that has been there for years. I wasn't able to see it from where I sat before because it was blocked by something else. The first day I sat in my new spot, I saw it again. We bought it on a trip to San Francisco a few years back. It was wonderful to rediscover it, to see it afresh, to be pulled into the memory that comes with it. That's why we buy these things isn't it, no so much because of what it is but because of what it calls us to remember. And I sat there, in my new spot, thinking new thoughts about the life I've lived and the places I've been.

That little memory marker was purchased just after I became a wheelchair user. Joe and I were learning how to travel, how to relate and what our roles would be in our relationship. I had gone from standing to sitting. I had gone from being the taller to being the shorter. Joe who could always find me in a store because of my height, now had to go searching for me. We both saw the world in different ways. Our seats had shifted, in a pretty major way. In my head, in his head, the furniture had been moved. And, of course, where we once could walk, blindfolded through the rooms of our lives, we were now tripping and falling and bruising ourselves.

I had spotted something that I wanted to buy, I gathered it up in my hands, and then discovered that I couldn't push my chair. I struggled to get it into the bag at the back of my chair. Later I needed to get Joe's help to get it out, parts of it got tangled up with other things in the bag, and, as would happen when we were both tired from the travel, we got short with each other. I didn't understand why Joe was making such a big deal about it. He didn't understand why I couldn't understand that it was a big deal.

I rolled off to sulk. Joe stood with the, what I call the Jobes look, on his face as he stood in line. After we left the store we were heading back to the car. There was a small restaurant that had wonderfully big tables under huge umbrellas on the walkway. The day was warm and sunny, the shade looked inviting. We agreed without talking much about it that we'd stop for lunch. I rolled into the table and Joe took his seat. A few minutes later I pulled out the little decoration from the back of my bag, muttering (to Joe's pleasure) at how easily it got tangled up in stuff in the bag. We placed it on the table to admire while we ordered lunch.

Suddenly, I knew it was going to be OK. I think maybe that's the exact moment I knew that Joe walking and Dave rolling was the new norm and that we would be alright.

As I sat in my new spot, seeing things afresh, I knew again ... that everything is going to be OK. It's nice, every now and then to be reminded of that simple fact.

Monday, February 25, 2013

A Different Difference

"Mommy, that man ..."

I am sitting beside Ruby and Sadie, with Joe on the other side. I had been put in charge, for a few minutes as things got organised, of Ruby's movie snack. With my popcorn in one hand and her combo of a frozen blue drink, popcorn and a Kinder chocolate egg in the other I looked like a concession stand all on my own. Sadie had dropped her egg so Ruby was assisting in the search as I guarded over her stuff.

Then I heard the little voice from the seat behind us, "Mommy, that man ..."

A tense "shhhhhhhh" attempted to hush a child that wouldn't be hushed. Again, "Mommy, that man ..." I didn't have to turn to know that she was pointing at me when she spoke.

Mom whispered to her, "Yes, I can see he is in a wheelchair."

"No," the little voice growing more insistent, "that man ..."

Again, "shhhhhh!"

"But mommy, that man ..."

Mom more forcefully now, "I can see he's really big, now let's talk about something else. What's happening at school tomorrow."

"No!, Mommy that man ..." she pauses waiting for her mother to hush her, Mom by now has given up. She continues, "that man lets those little girls have chocolate eggs."

Sometimes what makes me different, it seems, isn't always the obvious.

Sunday, February 24, 2013

Scooter Vs Chair


Double Wow.

The discussion yesterday was wonderful. I'm afraid what I'm about to write will be mere gruel in comparison.

If you remember I was asking about power wheelchair versus scooter. I found a real difference in how I was received. Here are some differences:

My wheelchair seems to give me an acceptable status as a disabled person. While people noticed my weight, there seemed to be little in the way of assumption that one led to the other.

The scooter on the other hand put me right smack in the middle of the stereotype of lazy fat guy using a scooter. Here it seemed that my weight was directly attributed to my need for a mobility devise.

My wheelchair, then, gave me status as a person with a disability and as such my intelligence tends to be questioned, my boundaries tend to be violated. In my chair, I'm likely to be talked down to, if I'm spoken to at all. In my chair, I'm likely to be patted ... shoulder, arm, knee!

My scooter didn't seem to communicate the same thing at all. I was surprised that I was engaged by clerks and others as someone who we expected to have opinions and vocabulary. I was NEVER touched, not once, in the way I'm touched in the wheelchair.

My wheelchair reduces status but it also reduces blame.

My scooter increases status and increases blame.

The "fat guy on a scooter" deal, I admit, bothered me more than any other aspect of the experience. I am not a lazy man, I am not what they think I am. That, for me, trumped the issues with the power chair.

However what was really concerning to me was the amount of intrusion that comes with either. The assumptions and the stereotypes that wrap around me like an itchy sweater the moment I leave the door and head out into the community. It's strange, indeed, that people feel because they've watched House and read an article in the newspaper that they've been granted medical degrees. You can't diagnose me from looking at the seat I sit on - so why do they try?

Saturday, February 23, 2013

You First

It was a tense few minutes. My power chair, Henry, was returned after a time away at a spa. A really expensive spa at that. He sat there in the hallway looking like he was glad to be home. I nervously climbed aboard and out we went. After 4 years of use, doing a lot of miles, I suppose its only to be expected that repairs will need done. However as year after year passed, I came to think of him as indestructible. This breakdown shook my confidence. I was told that the chair would be faster and more responsive to the touch, and both those are true. But I didn't want faster and I didn't want more responsive, no matter how nice those things are, I want reliable.

We ventured out on a test run. Up to the bank. Over for lunch. Mail a package at the post office. All normal every day things that I want to be able to do again without thought or concern. It all went well. As we were coming home I began to relax and enjoy the power behind the power chair. The scooter served me well, and thank heavens for it, but it's not as powerful and it's very different to operate. It's narrower so it can go places the chair can't. It's longer so it can't go places the chair can. They are different beasts.

One of the things that's odd is the social difference I've noticed between using a chair and using a scooter. Before I write about the difference I noticed in people's reaction ... I want to see if any of you have noticed any kind of difference in social approval or disapproval based on the mobility aid you use. I've talked to people who tell me that there is a huge difference between cane and walker -  interesting stuff this - seeing how prejudice and stereotype are fine tuned.

For those readers who use neither, please contribute. If you were going to guess a difference in reaction between the two means to transport, what would you think the difference was?

Anyways, you first ... then me.

Friday, February 22, 2013

Changing Signs

Having a disability, in the minds of many, is like having a collection of minuses. To many, who become disabled later in life, when first experiencing disability, that seems true. Things are harder, things take more planning, things require help, minus, minus, minus. For me, one of the things that became almost immediately more difficult was dressing. I went into the hospital, catastrophic illness and all, being able to dress completely independently. I came out, two surgeries and a recovery later, needing help with getting dressed. At first I thought it was a temporary thing, that I was still dealing with the after effects of the surgery. It gradually dawned on me that I would never be able to get through a day again, without assistance.

Some things shifted columns from "needs assistance" to "done independently but very slowly." One of those things is putting my pants on. (I can't believe I'm telling you this, it's wildly private, but there's something I want to say and this is the only way to say it!) I sit on the side of the bed and process pretty much every move I have to make, setting up, targeting, attempting. For the first few weeks as I was determined to do it myself I struggled with frustration, with maintaining determination, with tears. How could something so basic now be so incredibly hard? Training my eyes to do what my skin used to do took time. A lot of time.

Then, one day, a change happened. Similar to the change that happened when you were a kid, the one where yesterday you needed help tying your shoe and today you know you will never need it again - or so you think. I now have every confidence, when I sit down to get dressed, that I will rise, pants on. I don't let Joe stay in the bedroom while I'm doing this. My solution to the problem of pants is very personal, it's mine alone.

I realized yesterday that the slow deliberate way that I go from naked to dressed has become quite a calm and peaceful ritual. Where once I had to pause and really focus on what I was doing, I find I'm still pausing. There is no longer any need for that pause, I know what to do and how to do it. But that pause was there for so long as I developed this skill again, it was part of how I did it, it's now in the routine. And I love it.

Sitting on the bed, early in the morning, readying myself for work or for the weekend, I pause, pants hanging expectantly in my hands, I think and I pray. I have created the calm, the I in the storm of the coming day. Ideas flit by my mind, visiting me in this rare moment of quiet. Realizations have time to form gathered together from one part dream and two parts reflection. It's allowed me to grow more contemplative. I enter the world, now, much differently than I did before. I no longer rush crashing into the day. I no longer allow busyness to take me by the nose and rush me from pillar to post. I start with a kind of peace.

I put my pants on myself. And by dressing disabled, I stuff my pockets with all the tools I will need for the day.


Thursday, February 21, 2013

Growing Pains

He disagrees with me.

I disagree with him.

We are experiencing conflict.

And I like it.

A fellow with an intellectual disabilities really disagrees with me about something. It's something that manages to affect both his life and my life. I made a decision, one that was rightfully mine to make. He didn't like that decision at all - and has told me in no uncertain terms. He has expressed himself and his anger, or probably more accurately - displeasure, with me clearly. I understand where he is coming from. He understands where I am coming from. After listening to him, knowing that he kind of expected me to back down and change my mind, I still felt that I'd made the right decision. And ... after all ... it was my decision to make.

So we've gone back and forth a bit.

And both learning as we argued and discussed the issue.

He was learning that I have rights too, that I get to exercise those rights, that what's mine is mine and what's his is his. AND this decision was mine to make. I thought it through, he knows that. I heard his argument and went through my reasons again and reevaluated my decision, he knows that. He once would have battered at the boundaries, he once would have shouted the walls down, he once would have believed that his rights superseded mine. Once.

I was learning that it was truly OK to have an honest, adult disagreement with someone with an intellectual disabilities. I was learning not to patronise him, mollify him or back down from my honestly held point of view. I was learning that adult is as adult does and that I needed to be clear and kindly honest with him about my perception and my point of view. I was learning that it was OK to stay the course. I once would have behaved differently, like I was calming a child. Once.

This is a brave new world. It's what we wanted and what we worked for. I believe this fellows advocacy skills will have been honed by this experience. He knows that he's been heard, he knows that he expressed his point of view well and calmly. He knows that winning isn't always changing someone's mind or someone's decision, sometimes being clearly heard.

This is a brave new world. And that world is going to ask of me to work with adults like they are adults. It is going to ask me to think about my relationships with self advocates in a very, very different way. It is going to ask me to 'grow up' my expectations.

Conflict ... who thought it could be the cause of growth.

Wednesday, February 20, 2013

Deja Moi

A conversation Joe and I had yesterday:

Dave: Hey, guess what, apparently I'm mythic.

Joe: What do you mean ... like of mythic proportions?

Ha. Ha. Ha. Funny man.

I was telling him of discovering the fact that there is a rumour on the Internet that I am not a real person. Yep, that's right, there are those saying that this blog and my Facebook page were set up to create a fake person named "Dave Hingsburger." I read a conversation of comments wherein one person was setting forth the idea that I'm not real and other stating with equal fervour that I was indeed real. How odd that was to read. I left a comment assuring them that I was a real person, but then that's what a fake person would have done too, right. How do you win that argument.

I guess the first thing I thought about was the fact that I should be kind of flattered that enough people know me that there would be enough interest to create the energy for people to talk about me at all. Cool, I guess.

Second, though, was the somehow deeply disconcerting feeling that this generated. Someone declaring that I did not exist as a real person was disconcerting because it was a deeply deja vu experience.

Like how I disappeared as a person when I sat down in my wheelchair and suddenly didn't exist to wait staff and store clerks.

Like how I suddenly didn't exist as a person who could take care of my own luggage at the airport.

Like how I was discounted as a social equal in a thousand different interactions.

People with disabilities are always in the position of saying "YOOOO HOOOO, I'm here, I'm real, I matter." So this seemed to be just an extreme example of the same thing.

So, again ... the mantra of people with disabilities the world over ...

I'm here. I'm real. I matter.

Tuesday, February 19, 2013

A Waitress In Tears

I was chatting, electronically, with someone who told me about her child with Down Syndrome being in a restaurant with friends. The waitress serving the group was moved to tears when hearing them all talking about marriage and plans for the future. As it turned out the waitress, at one time, worked with people who have disabilities.

I understand her tears.

For a long time we have worked for, hoped for, and dreamed of a day when people with Down Syndrome, people with all disabilities in fact, would grow into a world of expectation of adulthood. This was once thought impossible and now it seems at hand.

And many of us are unsure of how to respond, how to react.

This generation of children with disabilities are the first to take a step towards the new world of adulthood. Generations past grew up in the land of the long corridor, in the region of hopelessness and in the territory of outcast. We have no idea of how to make our way and what complications may arise. We are unfamiliar with the joys that are coming. We don't know, sometimes, if we should laugh or cry or simply sit and marvel.

I see these kids when I travel.

I speak with them.

They use words that are unique when spoken with thier young voices - rights, choice, MINE.

Once the future of someone with a disability was mapped out in meetings ... goals were set, targets established, success was made measurable! We planned and we plotted and we prepared. We knew what was best and we wrote it down ... in ink ... because we were so sure of ourselves and our right to draw maps and plan plans.

That waitress knew.

Deep down she knew.

That those voices that spoke of the future, of adulthood, of expectations, were free.

Free from the control of others.

Free from the input of strangers.

Free from the plans of the team.

And I think, perhaps, that's why she cried.

I know it's why I do.

Monday, February 18, 2013

Family ~ Toward The ~ Day


(photo description: Three children holding hands, in a family style pose: an older brother and two younger systers, both with Down Syndrome. Pitcture found on web, no copyright infringment intended, if a problem simply notify and it will be removed.)

Family Day.

Today is a holiday in Ontario and it's a day designated to celebrate the family. I enjoy the holiday part of the day but ... family? I'm not so sure of that.

The big push for 'family values' came as a concerted response against the gay community's growing demand for recognition, for rights and for respect - the three 'r's of any civil liberties movement. We all heard, constantly, about how the family was threatened by the demands of son's and daughters, uncles and aunts, parents and grandparents to be considered an equal part of any family. It was disconcerting hearing society talking about gay people as threats to the family as if we were part of no family. It was disheartening to see that many parents tossed children out of their homes and their lives, paradoxically, in defence of the family.

It was made clear, family doesn't include ... me.

Money was raised, significant money, to protect the family and to lobby politicians to ensure that laws would be passed that disallowed gay people the right to love, the right to participate and the right to belong, the three rights at the core of any civil liberties movement.  That money was spent on bumper stickers, on rallies and on election campaigns. FAMILY VALUES became a ubiquitous call for repression, rejection and repudiation - it became a term that froze my blood.

And yet ...

All the while ...

I worked with many people with disabilities who were abandoned, dropped off at institutional doors by families who didn't return. These families, who I misunderstood for years, often made the decision to do what they did on the advice of those who were paid to know better, know best. They were told that their child with a disability would destroy the "family", there's that word again, that the needs of the infant child, the needs of the growing child, would be too much, the family would suffer, the child would suffer, the parents would suffer. To protect the child, to protect the family they were told to make a decision in the best interest of child and of family. And they did. They said goodbye to a child that somehow, in someway, had been defined out of the word "family."

And yet ...

All the while ...

Statistics continued to pile up. A log jam of numbers. A tsunami of statistics. Dad's were sexually abusing their children, Mom's were violently physically and psychologically abusing their children. No where near all of them of course, not by a long shot. But research made it clear that the family may be the least safe place for children to be. Lost and alone on a city street is often statistically safer than bedtime at home for some children. Research looked for reasons that the unreasonable could happen in this house, and maybe that one over there. Children were being hurt. A mother twisted her baby's legs until they snapped. A father breaks trust in the most vile way possible. Hurt happened.

And yet ...

All the while ...

The family is under attack. The family needs defending. But gay people are used as distraction, disabled people are pulled away when parents arn't looking. Something was apparently being done about the family - yet nothing actually was done about the family. Dollars are needed not for lobbying but to provide support, to provide education, to provide resources ... to parents who struggle to make ends meet, to make the right decisions, to be able to juggle time. The family, the precious, precious family is being destroyed by the idea that some aren't family. The precious, precious family is being destroyed by the idea that it can take care of itself. The family, the precious, precious family, is looking out at difference rather than in at the hurt and harm that comes from unbridled temper and unwanted touch. The family needs attention. The family needs protection.

The family needs some values.

And yet ...

All the while ...

There are those who want to be family. Those who want to participate. Those whose desire to BE family honours the ideal of what families can be. Home and harbour. Welcome and warmth. Safety and serenity. The family doesn't have enemies from without, it has enemies from within - each of us, each one of us, need to protect this thing called family by ensuring that those in our care, those needing our care are kept safe from our tone and our touch, our words and our way, our manner and our manners.

Because you see ..

I've seen, with my own eyes, this thing called "family" ... seen it do what only "family" can do. I've seen families embrace gay sons and lesbian daughters. I've seen mothers at weddings of their transsexual sons. I've see it. I know what it can be. I remember, clearly, being in a pride parade years, and years, ago when the only corporate sponsor was the corporate body of the gay community, and seeing an older woman standing with a middle aged couple. The couple held between them a sign saying, "We love our gay son." Beside them the older woman held a sign, "I love my gay grandson." I walked the rest of the march in tears. Their boldness and their love seemed to embrace all of us who wanted a parent whose love was big enough to include our identity.

Because you see ...

I've seen, with my own eyes, this thing called "family" ... seen it do what only "family" can do. I have been privileged to spend time with a few families who stood against the punishment doled out on parents that didn't listen. The lack of service, the lack of support, the lack of schooling ~ all those things, I believe, were both part of the persuasion (your child will get special services in that special building we call an institution) and part of the punishment (you chose to keep your child at home now do it without a single bit of support ... we didn't build schools for YOUR kid). These parents, and the love of their children, single-handedly built the agencies that now support community living. They say that we all stand on the shoulders of giants. In my work, I don't think that's true, I think we stand on the edge of the most powerful agent of change that there is ... defiance that drinks at the well of love.

And now ...

And in the future ...

I will turn from my anger at the use of the word "family" for the political purposes of exclusion and work to make the word "family" a word that is instantaneously recognised as the starting place of all things that have value in the world.

Family values family.

Now there's a bumper sticker I could put on the back of my wheelchair.

Sunday, February 17, 2013

Sleeping Beauty's Older Uncle on the Chunky Side of the Family

I slept for nine straight hours (excepting getting up for a pee at midnight).

I almost never sleep that long.

In celebration of a good night sleep ... I'm going back to bed to read.

See ya all tomorrow.

Saturday, February 16, 2013

A Trip to the Clinic

I went to see my doctor today, I had had some routine testing done - nothing wrong, nothing expected to be wrong, but just to check everything out. Normally my visits to the doctor are very short. I know that there is this idea that because I'm fat and because I'm disabled that I am a burden on the health care system but in reality I see the doctor only a few times a year and then only for a few minutes. My doctor is very thorough and always inputs my results into the computer so that when he's talking about my 'sugar' or my cholesterol, I can see from the graphs how my health is over time. It's cool.

This time though, I had a question for him. I'm not going to write about it here because it's personal, so after he finished reviewing my tests - everything good to go, I asked him. He asked me a few things to ensure he understood my concerns and my intent and then we had a conversation. I felt respected. I felt he was interested. I felt that I was listened to. I felt like he was willing to spend the time necessary to make sure that we covered, in all the detail I wanted, the issue I'd raised.

On my way out I thanked him for being the kind of doctor that I felt that I could talk with. He was embarrassed, I could tell, but I still wanted him to know that the time he took with me mattered to me. Too, the attitude of interest and attention mattered even more. I left with things to think about and with the information I needed in order to be able to muse properly.

I'm writing this because I was reminded, again, by example of how to 'be' with people who have questions, needs or concerns. I am the one who sits on the other side of the desk, on the pen side of the report, on the opinion side of a matter.

It was important for me to be listened to, with interest but without judgement.

It was important that I didn't feel that the rush of people waiting press through my doctors words.

It was important that information be given in such a manner that I could understand it - free of jargon, free of big long medical words.

Maybe it's important for me to do those things too.

Getting service is sometimes the best way of realizing what kind of service to give.

(Please don't read too much into this - I am in good health!)

Friday, February 15, 2013

To The Table

Um, pardon ...

I was chatting with someone, that I don't know very well, about the controversy over Rex Reed's comments about Melisssa McCarthy's weight. During the conversation she referred to Mr. Reed as "just an old fag."

Before I continue let me tell you something. I hate that word. When growing up, feeling like the only gay kid in the world, I heard the words ... fag, gear box, homo are but a few. Those words terrified me more than they hurt me. I desperately didn't want to be someone who had a whole 'nother set word weapons that could be used against me. I already had 'fatty fatty two by four' and 'lardass' and 'pig face.' To this day I don't like "fag" or "fatty" or any similar words that have come along, and, ultimately I don't like name calling. I'm not even very comfortable with the "I'm X so I can use the word." You use it, I hear it, the context may matter to you, it kinda doesn't to me. So. I don't like the word. Back to what happened.

When the word "fag" was used, I said, politely but firmly, "You do realize that I'm gay don't you." Recognition dawned on her face that she'd used a derogatory word and, after a second's fluster, she said, "Oh, that's OK, I don't think of you as gay."

Um, I do.

This has happened to me a number of times as a disabled dude too. People thinking they are giving me the bestest and biggest compliment when they say, "I don't think of you as disabled, not really."

Um, I do.

I think that some of us in minority communities play the "we're just like you," tune far too often. I'm not "just like" anyone. Further the fact that I 'm gay, I'm fat, I'm disabled, affects my perception of myself, my world and my experiences in the world. I have a whole different set of "truths" than you may have. I think that one of the best aspects of DIVERSITY doesn't come from any struggle for sameness but from the celebration of differences. Gay people are different from straight people in some fundamental ways. Disabled people are different from non-disabled people in some equally fundamental ways. That's a GOOD thing. What we bring to the table, when the world holds a pot luck, are dishes created from ingredients that grow in the furthest regions of our world - and they'd be missed.

The fact that those in the "norm" (and don't tell me there's no such thing as "normal" - you may want to believe that but none of them do) feel that they are somehow elevating me when they "don't consider me different" is insulting. I don't feel "elevated" I feel discounted, I feel erased, I feel that someone just spit in my potluck casserole.


I've said it before.

I'm gay.

I'm fat.

I'm disabled.

That isn't all of who I am, but it IS who I am.

Thursday, February 14, 2013

DO OVER! Valentines

Joe and I are going to celebrate Valentines Day this year for the first time in the history of our 44 years together. Neither of us ever liked the holiday and it's always seemed very, very contrived and (forgive me) very, very heterosexual. So. We just opted out. For me, I found Valentines painful as a child. I remember making up a box to put on my desk, just like all the other kids, and I worked hard to decorate it nicely. Then at home, I'd make up some Valentines and sneak them in my box so that it wouldn't have that horrid hollow sound. Wasn't a popular youngster was Mr. Me. I always did get a few from the kids who had 'you have to give one to everyone' parents. Back in those days, I don't know if they do now, when you bought Valentines cards there were always the cards specifically made for the losers - Happy Valentines Classmate! I got those. Yeah. Great. So adulthood came along, Joe came along and we simply ditched the holiday and decided it was kind of nice to be kind of nice year round.

Having Ruby and Sadie in our lives, though, has changed things up. It's a horrible thing to push your past hurts into the present ... and allow them to tarnish the excitement of little girls who love chocolate, and hearts, and pink, pink, pink, pink, pink. So I found it odd to be looking around for Valentines things for the kids. I found it odder that I was enjoying it, imagining them being excited. We had Valentines cookies the last time they were here to visit and we sent a Valentines gift box for them to open. Both of us were loving being able to create fun memories for the kids. It was great.

It was like life just decided to give me a 'do-over' and man, if I get a 'do-over' I'm gonna 'do-over' good.

Joe and I just got back from the pharmacy, where we know the pharmacist by name (Hi Doris) and while he was getting a med review, I knew I'd have lots of time. I headed over to the Valentines section and found a garish sign of the word LOVE. I decided I wanted to have a picture of us with the sign that we could send to friends, and of course the kids, and that I could put up here.  So here it is ...

You should have seen Joe's face when I gave it to him to put with the stuff we bought. Vitamins, Immodium and LOVE were packed in the bag and off we left.

Ruby and Sadie are wonderful girls, we may have sent them a Valentines package but they gave us back Valentines Day.

So we wish you a happy and HEARTY Valentines Day.

What the hell ... HAPPY DO OVER day!

Wednesday, February 13, 2013

The Lost Language of Tessa

"I know."

People impact our lives in big and small ways. Tessa, our former next door neighbour, who died a few years ago now, always worried that she wouldn't be remembered. She had no family connections, in the traditional sense, but she had a large network of friends. Most of those fell away after her diagnosis of cancer, and fewer still visited her in the hospital in those last days. On one of her low moments, she spoke to us about feeling that "maybe, perhaps" she wouldn't be remembered and that, "maybe, perhaps," her life hadn't mattered. We spoke seriously, all of us, realizing that this may be one of the biggest fears that we all face. We helped her to review her life. How about the time she was interviewed by a U of T student for her thesis - Tessa having been considered an elder in the Feminist movement? How about the work that she did establishing programmes to help new immigrants to Canada who were under-employed and over-qualified? How about the role she had taken on as a disability activist after she had lost the ability to walk? She nodded at each of these, considered the fact that she had spent her life DOING, and doing important things. Finally she said, "Yes, that's all true, but will anyone remember me?" We said that we couldn't speak for anyone else, but that we would.

And we have.

We talk about Tessa almost every time we make a stew or a casserole. Tessa was notoriously inept in the kitchen. As we got to know her we developed a pattern of taking her meals every time we cooked up a big batch. She was appreciative of the meals and, though we think she wished that occasionally we ate meat, loved the variety of the things we make. It became kind of a fun, cross the hall, kind of thing to do. I would often sit in our apartment and listen to Joe and Tessa gossip as he delivered a plate or a pot of food. Tessa always made sure that she took us out for lunch or did other nice things for us, she understood and practised reciprocity.

But there is a really odd way that Tessa has entered into our lives. The two word phrase, "I know" is not unique to Tessa, of course, it's said by everyone everywhere. But Tessa has a way of saying it that was uniquely hers. I was once rolling by the Timothy's near us and I heard a voice saying, "I know," I stopped and turned around and found Tessa in deep conversation with a friend. Only Tessa ever said those words that way.

Well, not anymore. Joe and I both do ... somehow it's morphed into our own language. Not all the time, not every time, but often enough to seem like Tessa is tapping us on the shoulder and saying "Hello Boys."

We miss Tessa, of course.

We have all sorts of memories about our friendship with her. Tessa didn't know anyone else with a disability until I moved across the hall and she found it strikingly easy to take what she learned as a Feminist and apply it to her understanding of disability. She came to love the new dimension of meaning and purpose that came with the territory of being and out and proud disabled woman.

She wondered if she'd be remembered. Well, "I know" that we do.

Tuesday, February 12, 2013

The Rage about Reed

I met John Candy once.

He wasn't who I expected him to be, and I'm sure that's a common experience for actors, because, that day, he wasn't at all funny. I met a man who was writhing with self hatred. He hated being fat. He hated what his weight had done to his career. He perceived of himself as considered less because he was considered more. Now, I wouldn't want to say this is how he was all the time, or even some of the time, but that day, I met a man in pain.

I thought of John when I read about the controversy regarding Rex Reed's review of the movie 'Identity Thief' and particularly his attack Melissa McCarthy's weight. I've taken a section from the Hollywood reporter here to give you an idea about what's being said about what he said:

In three paragraphs, Reed manages to shred the Oscar-nominated actress for her weight four times, calling her "tractor-sized," a "screeching, humongous creep" and a "female hippo." He dismisses her career as a study in "being obese and obnoxious with equal success."

Rex Reed has been an incredible success as a movie reviewer and once held a lot of sway. He is now taking heat because of this review. And well he should. His words were an attack on an actress, not for her performance, but for her looks. Not fair and not appropriate.

I want to weigh in on the controversy. Not so much about what he said but about what people are saying about him and how people are framing this discussion.

Much has been said about how Reed would never have said the same thing about a male actor. This attempts to limit the scope of the bigotry about weight to only one gender. I'm not sure if any of you have heard the 'fat Elvis' jokes, or the remarks about Marlon Brando being a whale ... I've heard them. It wasn't long ago I heard a reviewer speak of John Travola's role in a movie, I forget which, in which SHE went on about his weight and appearance. Anyone who thinks that John Goodman's weight hasn't had an effect on his career is kidding themselves.

Here in Toronto we have a fat mayor, Rob Ford, who's politics I despise but I despise even more those who oppose him constantly going on about his weight. Really? That's political debate. Really? You'd like him if he lost a bunch of weight? One of the local papers put on their front page a photoshopped picture wherein they put Mr. Ford's face on the body of a nearly nude fat man. They expected cheers, and for the most part got them. They never for a moment thought about what that image would do to men and women with large bodies. They didn't care - and why should they, it seems few people do.

I remember seeing the book 'Fat is a Feminist Issue' and thinking to myself, 'To hell it is.' Fat is a broad based category of discrimination that hits all genders, all races, all ages. I am a fat man. I know that I face bigotry and stereotyping all the time. I know that I have to fight for respect in many social engagements. I was once bluntly told by an organisation that holds a huge international conference that the reason I have never keynoted for them was because of 'how I look.' They didn't want someone 'like me' on the main stage. They wanted me to be there and present to pull in 'my audience' but they didn't want ME big ME on the main stage. This happened less than a year ago. I can't tell you how this hurt. I don't go there any more.

Years ago I had my first really big interview with a newspaper, I was excited. The reporter had come to see me work, had seen me lecture, had asked me a lot of questions. When the article came out the very first line, THE FIRST LINE, was, "Dave Hingsburger is an extraordinarily fat man." I didn't read the rest of it. I shouldn't tell you this but it's time for honesty, I sat on the couch and cried. I was not then, who I am now, and I was devastated that after all that time, that's how the reporter chose to begin the article.

John Candy was devastated, that day that I met him, by his weight and full of self loathing because he couldn't seem to control it.

So, I'm disturbed by the fact that there is an attempt to rein in the prejudice and make it about gender rather than about weight. Is there a gender bias? I think there is, but it's less now than it was even 5 years ago. Boys are horribly concerned about their weight and six pack abs and their looks. Instead of liberating one gender, we've chosen to enslave them both. Reducing this to solely a gender issue dangerously misses the point.

But wait!! I'm not done.

What also concerned me was the way that people responded to Mr. Reed ... in various places I saw him referred to as ...

an old man
an old queen
a talentless hack

Others have suggest that they want him to ...

drop dead
die sad and alone
be stoned to death

All of them agree that he, in the article, used his power and his words to bully Melinda McCarthy. I agree, that's what he did. But it seems odd to me that the way to deal with his bullying is to bully him back. If you want bullying to stop, if you want name calling to stop, shouldn't you, actually, stop.

There are ways to disagree with people who bully.

I was disturbed, upset and angered by Mr. Reed's attack on Melissa McCarthy. But I don't wish him dead, I wish him transformed. I don't want to call him names, I want him to stop name calling. Those are my goals. I felt that Mr. Reed's review and the response to it has lead to a banner day for bullying.

And that to me, a fat man who wants simply a world where respect and dignity is the experience of all, is the tragedy in all of this.

Monday, February 11, 2013


On Facebook someone posted a picture of a young couple with Down Syndrome on their wedding day. I posted a brief comment saying, "Wonderful."

That's it.

Well, I got a really nasty message saying that as a 'disability leader,' I should know better than to fall prey to inspirational porn. The writer was more long winded than that, let's just say it was a blistering attack on my integrity as a person and my role as a 'disability leader.' I was quite stung by the whole thing. I'm used to this blog community where people debate and disagree but seldom personally attack one another. I guess I got a bit spoiled. Before I show you how I responded, let me address this 'disability leader' thing.

I have never claimed to speak for the disability community, I am only one voice. I have only lived with my disability for a bit over five years and would never dare presume to have the depth of knowledge and understanding of those who have a lifetime of experience. If I am guilty of anything, in that regard, it's using the voice that I have and fighting the battles that I face. I know that many of my opinions aren't shared by others in the disability community or in the community of service providers - but they are still my ideas and I have a right to have them and to express them. As myself, not as a 'leader.'

I responded by placing this comment under my previous 'wonderful' comment:

I just received a private note, quite nasty, asking what I meant by my comment 'wonderful' here on this picture. I was surprised because I thought 'wonderful' meant 'wonderful.' However, let me be clear I think it's wonderful because I like seeing pictures of people in love, people getting happily married. I don't think it's 'wonderful' because they have Down Syndrome and are getting married. Part of my 'wonderful' IS however, related to the fact they have Down Syndrome. Let me explain: A time, not long ago, people with intellectual disabilities of any type, would have been forbidden to even date someone. They were separated by gender, they were punished for relationships. Here in Canada (warning ... stop reading if you are uncomfortable with violent imagery) a doctor, working in an institution, castrated men with Down Syndrome and sold their testicles for scientific research, women with intellectual disabilities were sterilised against their will. We have been brutal regarding love and sexuality, BRUTAL. I say 'wonderful' in the most heartfelt way because BECAUSE ... it wasn't long ago that this would not have happened, would not have been celebrated, would have caused outrageous controversy. So, when I said 'wonderful' I meant exactly what I said, 'wonderful.'

What I didn't say, because it wasn't germane to the subject at hand, was how that attack made me feel. Further, I didn't say that my immediate reaction was 'hold on ... you a-hole ... couldn't you ask me what I meant before you told me what I meant.' Years ago I worked with a young woman who said, 'The thing about cerebral palsy is that you never get to finish your ...' And she was right. I watched over and over again as she was in conversation with others that people would get impatient with the pace of her speech and just jump in and finish her thought for her. It drove her bananas. What really pissed her off though was when others with cerebral palsy did it to her ... she felt that they should know better.

And I guess that's how I felt. Those of us in the disability community know what it's like to have others, without disabilities, tell us how we experience our lives and our world. We resent that they don't ask. Resent it. 

So, we should know better and do better.

Don't you think.

Sunday, February 10, 2013

Gateway to Kindness: A Blog in 3 Parts - Plus Summary

Part I

Henry, my power chair, sits looking lonely and dusty waiting for the repair people to come on Monday. They'd scheduled Friday but with the snow storm and all it was impossible for them to get here. While I'm frustrated, I have to say that they are quite attentive and respond quickly. During the crisis of Henry just coming to a full stop, I'd forgotten that there is an option.

Several years ago when I was leaving the building a woman stopped me, a total stranger, and offered me a scooter that had been owned by a friend of hers who had just passed away. Joe and I went to look at it and it was OLD, really, really OLD. It's incredibly long and, because of that, we almost turned it down. Something inside my mind said, "What if Henry breaks down?" So we brought it home, me in my power chair and Joe on the old clunker. It fits, barely, in the elevator - it is really, really long, and we got it into the apartment. It's been out a couple times since - for the Gay Pride Parade and the Saint Patrick's parade. Other than that it's mothballed.

We got it out, looked at it, and thought we'd give it a whirl. It creaked and groaned a bit, not wanting to be wakened from slumber, but, after a long charge, we got it out and were underway. I'm not used to driving a scooter, it's much different than a power chair and takes some getting used to. It's length means that turning has to be calculated. But, all in all, we managed.

I am very aware that it is old. Very aware that I need to treat it gently. Very aware. But I'm so glad I have it. So glad I was able to get out of the apartment. When we took it out the first time I couldn't believe how good it felt. I'd only been house bound for a day but that had already taken a toll on my spirits. This old green scooter will be a life saver while Henry gets repaired. (I almost said, "While Henry gets fixed" but that just sounds wrong.)

And I can't tell you how grateful I was to be able to get out.

Then, we got buried in snow ...

Part II

This scooter is much lower than my power wheelchair and the tires are no where near as impressive. I've often had other chair users compliment me on Henry's tires and I always feel very proud - though I had nothing to do with selecting them. So, Joe and I decided that we'd try to get out for a bit, maybe go to a movie or have a cuppa tea. When he took out the recycling he went and checked and came back with the grim news, "We can try it, but the curbs are a mess." After a few minutes we decided to just go take a look.

I am new to scooter driving, and driving in the snow was particularly challenging. I got to the end of the driveway and I saw that the slope down to the road was covered, covered, in huge mounds of snow. I saw there considering a try. I figured I might get down but I didn't think I could get back. Just then I heard the toot of a horn, not a blast but a toot. I looked behind me and saw that a big truck with the Grocery Gateway logo on it was wanting to get out. I backed up, and as I cleared the space he needed I looked up to wave him on. A window slid down and the driver leaned out. He called down to me, "Tell you what, I'll use my tires to press down a pathway for you. I thanked him.

Then for the next two to three minutes he drove back and forth, back and forth, over the curb and managed to make a space large enough for me to get through and clean enough for me to get back. A few seconds later I was on the road and rolling. It was terrific. I had been granted freedom by the thoughtfulness of a total stranger.

Part III

beep beep

I don't know if other wheelchair users get the same joke offered to them, each time as if were freshly baked, "That thing should beep like the trucks when they back up." This is often accompanied by the person laughing at their little riposte. All I can now offer is kind of a weak grin. I know it's a bit of conversation but I've heard it over and over and over again.

beep beep

Well this old scooter actually has that sound. It beeps when it backs up. I hate it actually because I think it's loud and I know already it draws attention. But when I was backing up to get on an elevator I realized. I DON'T HAVE TO HEAR THAT JOKE AGAIN UNTIL MY CHAIR IS FIXED.


1) I am mobile again.
2) A moment's kindness and thoughtfulness gifted - gratis.
3) My chair beeps.

Now ain't those all just wonderful things!

Saturday, February 09, 2013

Ignorance or Prejudice - Your Choice

We got what we wanted, two tops for two little girls. We are making up a Valentines gift parcel for them and wanted to find a couple tops that fit the theme. With them in hand we went to pay. We shop here all the time and I went confidently on ahead. I turned and almost ran smack into a display case of women's panties. Joe and I have always felt uncomfortable shopping there for kids clothes as they are kept at the back of the store right behind the lingerie section. Our thought  is that there is a subtle message that if you wear these you are going to end up buying those. We try, as bashful gay men, not to notice that the breasts on the mannequins always seem to follow you when you walk by them. So, anyways, I almost ended up covered in silk.

The aisle way to the pay point was completely blocked. I was resourceful and thought, "OK, I'll just go through this way" ... nope, blocked. I was, again resourceful (you aren't resourceful if you don't try three times) and ... nope blocked. To get there I had to go to the back of the store, zip through to the other side and then go back up, but it also was blocked. I finally made it through a route that I couldn't even try to recount. By the time I was at desk, I was annoyed. We have this thing called the Accessibility for Ontarians with Disabilities Act and everyone in the service industry was supposed to be trained ... come on. I get you have to have sales but blocking complete access isn't a great idea and ... how come it's a fire hazard if I sit in one place waiting for someone and it's NOT a fire hazard when you place huge displays in the middle of an aisle?

So, as Yoda would say, "Annoyed I was. Um Hmh."

I asked to speak to a manager.

I was asked why.

I said that I had a question.

The clerk said, "Maybe I could answer it for you."

"OK good," I said, "Does this store block passageways for people with disabilities out of ignorance or prejudice, it has to be one or the other so which is it?"

The clerk said, "I will call the manager."

I pay for the items while awaiting the manager.

She arrives saying, "May I help you?" I could tell by her voice she hadn't been clued in.

"Yes," I say, "I have a question."

"Go ahead," she says.

I asked again, "Does this store block passageways for people with disabilities out of ignorance or prejudice, I just want to know which it is."

She blushed, anger flared in her eyes.

"Well, which is it, are the people who set up displays simply ignorant of the needs of people to get by or are they actively prejudiced against us?"

She stared at me.

"Take a look at the aisles there, there, and there, and tell me you don't see a problem."

She still hadn't spoken but went to look.

"Oh," she said.

"So, ignorance, prejudice, just let me know, I'm really, really curious."

"I would have to say ignorance," she said, continuing, "these really are in the way aren't they?"

After she promised that they'd institute a policy of doing a walk by every time the displays are set up to ensure accessibility I turned to leave. To do so I had to go back to the kids section, across the store and then wend my way through the other side to get to the elevators.

As I passed on the other side she was on the phone talking rapidly while absently pointing at the blocked aisles.

Point made.

Friday, February 08, 2013

And Today's Question ...

I was so torn. And I must have looked a bit weird. Joe and I had gone shopping at a very upscale grocery store. We tend not to go there because everything is SO expensive. We were stunned to see that a loaf of bread cost 7 or 8 bucks. I whispered to Joe that we should make an announcement that not even the most expensive bread can take the stink from poo - because most of the people shopping there seemed to be convinced that when they pinched a loaf it would smell of fresh baked money. ANYWAYS that has nothing to do with the dilemma I found myself in.

One of the things I like about the store is that the staff who work there are a very, very, diverse group. I LIKE diversity. People of different ethnicities, differing genders, differing sexualities, differing faith groups, differing approach to body art. It's cool - intentional diversity always is. I did notice that there didn't seem to be anyone with any kind of disability on staff but ... hey we often ride on the back seat of the diversity bus - because that's where the lift is of course.

But today, while I was looking at the bread and thinking, oddly, about poo, Joe came up to me and said that they had hired a young man with Down Syndrome to work in the Deli department. Cool! Very Cool Indeed. Intentional diversity always is. As it happened when we went up to pay for our groceries, thinking all the while about the hugely expensive loaf of bread, I notice the young man sitting on break at the tables near the customer service desk.

Behind the desk was a young man who was groomed to perfection and who walked like he was on a runway. In this case when I say 'he's so gay' ... it's because he was - and out about it and proud about it too. I made my way up to the desk with the intention of saying something about the stores commitment to diversity and how much I valued seeing that as a customer. I wanted specifically to say something about disability in my compliment because, BECAUSE, I was told once by someone who worked in a large shopping centre that they get complaints from a solid minority of customers about 'not wanting to see that kind of thing' in a grocery store. As if people with disabilities curdle milk just by passing by! So I know they are going to get complaints. But I got there, he asked me, sweetly, if he could help me, I just mumbled something about how great the store was. He smiled, like he'd been trained to, and I could tell he was thinking, 'Oh, OK.'

Complainers have the courage to complain.

Yet compliments seem to die in the mouth of the praise-giver.

Which happened to me. Complainers don't worry about how they are taken or understood, they just want their voice to be heard ...


I worried.

Would I be centring him out?

Would I be seen as silly?

Would my disability make my compliment less valuable - in a conflict of interest kind of way.


I didn't.

And I'm not sure I did the right thing by remaining silent. I WANT stores to know that there are customers on the other side of the employment issue ... customers who value intentional diversity ... customers who would come back to a store just BECAUSE of open hiring practises ... customers who think more highly of places that create jobs for all.

But I kept my mouth shut.

So, here' today's question ... should we speak up about these things or, if I had, would it have been seen as placing too much focus on the young man's disability?

I am truly curious to hear what you all have to say.

Thursday, February 07, 2013

The News In Plain Language

At work, our members have developed a newsletter that is published on a quarterly basis. It is written and produced, with some assistance, by the self advocates at Vita. It's name, Vita Member Times, came after a fairly heated debate and a agency wide vote in which a significant number of members lined up to cast the ballot. There is a lot of ownership over the newsletter and its contents. The pieces are all written by our members in plain language and the stories and articles make for engaging reading. It was clear that the members (the word chosen by our self advocates for us to use in place of the word 'client' which they asked us to cease using) wanted to be informed about the life and work of the agency and of the activities of the self advocate group.

All this to introduce a new project which I have just learned about. It seems that a study has been undertaken about the accessibility of news and political information for people with intellectual disabilities. It's the first study of its kind that I am aware of and what it made clear was that we have to really broaden our understanding of accessibility. Plain language is an accessibility issue as important as ramps. Barrier free should mean more than level entrances it should allow mean a level playing field. The outcome of this study is work towards the creation of a plain language newspaper for people with intellectual disabilities.

I read this article just before being asked to comment on some new legislation. I grit my teeth and set about reading the legislation. The language was so far over my head that I had to stop and read and reread and reread what was being said. When I figured it out it kind of angered me that something which could have been simply stated was presented with convoluted language. It made me wonder exactly who they were tyring to 'keep out' of the discussion and debate. I have to admit if I didn't have to read it, I would have given up completely in my attempt.

I thought of all the times that Joe and I have done rights workshops and bullying workshops and abuse prevention workshops for people with disabilities and in those workshops we've heard people with disabilities discussing the news and the world they live in. They were interested and had a desire to be informed, even though it took a lot of work.

In fact I remember when the Clinton scandal broke and was all over the news. The American press were scandalized while we Canadian thought to ourselves - "Really, you care?" Most of us don't even know the Prime Minister's wife's name. By the by, this is not because we are poorly informed, it's because we don't care all that much about Steven, or any of his predecessors like Jean, or Joe, Kim,or Pierre's private life. Anyways back to the Clinton scandal.

I was setting up to do a workshop on rights for people with disabilities in a gorgeous old mansion that had been donated to the host agency. We were all meeting in a living room almost the size of my pad here in Toronto. The self advocates were talking animatedly about the news about Clinton and Lewinsky. One of them said, and I'm paraphrasing from memory, "I need more information. We all know that it's wrong to have sex at work. We know it's OK to have sex at home in private. Since the president lives in the White House and works in the White House, I want to know if he touched her while he was in his office or while he was in a bedroom. If it was his office, what he did was wrong. If it was in a bedroom it's no one's business but Hillary's."

No better discussion of the issues did I hear in the media.

Anyways, I ask you to take a look at the infographic that asks if people with intellectual disabilities are left out of political debate. I found it interesting and I hope you do too. Make sure you make it to the bottom where they present several ideas for making information more readable. I'd be interested in hearing how you think we can all ensure that when we think about accessibility, we broaden the meaning of that word to mean ... accessibility.

Wednesday, February 06, 2013

Well, It's Done ...

I am sitting here crushed.

After two bouts of repairs, my powerchair was working with minimal effectiveness. I was able to get around but had to be careful. One or other of the wheels would lose power, and I would veer from one direction to the other. I managed but it was a fairly stressful ride. We had planned on having it into the shop once we were away so it could be fixed at their leisure.

After work today we were planning a kind of fun trip out and I hopped in the chair, turned it on, and realised that I was sitting on this cold, dead, thing. Yikes.


They are picking it up tomorrow.

I am without chair.

On top of that, my manual chair has lost a footrest and we've been trying to get a replacement one. So, I can't really get around far on that one either.

I am virtually housebound.

I can still get to work and back but that's about it. However, I'm trying to be plucky, I'm disabled - it comes with the territory. So in full pluckyness I think to myself, 'Well, got to be glad it broke down here and not out in the cold.' I am also trying to be inspirational - it's what the world demands. So in full inspirational mode I am still getting on with my life.

But ... really ... SHIT.


There, now I feel marginally better.

Tuesday, February 05, 2013

Perhaps Next a Blueprint

Many of you know that one of the things that I am hired to do is to work with self advocates in the development of a 'Bill of Rights' which outlines their expectations of their service providers. I've been doing this for a very long time. The first one that I did was prompted by a call from Wendy Hollo who was then the Executive Director of an organisation called "Skills" in Edmonton. Wendy wanted to have a "Bill of Rights" written by the people she served to guide the service she gave. It was a radical concept at the time, and in some places, still is. I remember facilitating that first group of self advocates and remember thinking about how powerful the experience was for me, for the self advocates who attended and, ultimately, for Skills.

Since then I've facilitated similar sessions all over North America and the United Kingdom. From a large front room in New York City, to a church hall in London, England, to a lounge in a curling rink in rural Ontario, I've met with group after group of self advocates. Every single time that I work with a group something new emerges. In Essex the group came up with 'The Right To The Extra Five Minutes I need to Think.' I was bowled over. What a brilliant idea. Here at home in Vita, 'The Right To Learn About my Rights and the Opportunity to Practise Them Every Day.' Another brilliant idea. At a group yesterday they wanted to incorporate statements of responsibility INTO their Bill of Rights ... awesome.

Joe and I were talking, spurred on from a question we were asked at a Bill of Rights session we facilitated yesterday, about the changes we've notice over time. The level of sophistication of self advocates in regards to their rights and, more properly stated, their right to have rights, now is much different than it was twenty years ago. The kinds of discussions and the language with which people have to talk about their rights and the kinds of discrimination they face in society has grown astoundingly.

Joe remembered, as we talked, about some of the early group and how their requests were so basic, profound, but basic:

The right to answer my own phone.

The right to open my own mail.

The right to close my bedroom door.

The right to choose what I watch on television.

I think it was these kinds statements that began to really change me and change how I saw the service system and those of us who worked in it. What kind of control did we have, what kind of repression do people experience that their view of 'rights' were to experience even the tiniest bit of autonomy and dignity. Moreover, it change how I saw agencies who had the courage to have an 'outsider' come in to meet with, without the presence of staff or management, the people they served. I now see that change happens when it is 'willed to happen' ... the will is the way. And that therefore people provide the service that they 'will.' Things don't happen by accident, they happen by design.

And that design can be changed.

Over the last year or two the kinds of things that people with disabilities talk about in these session have matured and the complexity of the Bills of Rights have changed, here are some themes that now arise more and more often:

The right to safety within the service system and within society at large.

The right to be seen as an individual.

The right to voice and choice.

The right to live as an adult.

These themes seem to be independent on the size of the agency, urban or rural, nationality or gender mix. There also seems to be more and more of a desire to write a Bill of Rights that goes beyond agency walls and into the community. The experience of community living, though wonderful in many ways, brings bullying and teasing and discrimination. This topic comes through loudly and clearly and people want to know that the agency that they serve is confronting those issues AND that they are assisted to learn how to confront it themselves.

From those first groups to the groups over the last couple of years there has been a change happening in the self advocate movement.

A welcome change.

For the most part, not always but nearly, these Bills of Rights that have been facilitated have changed the organisations that have had the courage to have them written and then, even more courageously, have them used.

The next step, and it's never been done before ... is to have a self advocate group design a Bill of Expectations for Community Change which would become a blueprint for how an organisation and their self advocates could work together to make inclusion a little more welcoming.

Monday, February 04, 2013

Forgiveness: A Guest Post By Donna Lee


I looked it up - according to Merriam-Webster it means:

a) to give up resentment of or claim to requital for  (forgive an insult)

b) to grant relief from payment of (forgive a debt)

c) to cease to feel resentment against an offender : pardon (forgive one's enemies)

But there is a different understanding of forgiveness that I grew up with and which I think is closer to the meaning assigned to the word by many people.  Forgiveness is equated with absolution.  In fact ‘absolve’ is listed as a synonym for forgive in some definitions of the word.   In church I was taught that we are absolved from our sins when we confess them to God (or to a priest), and we are to pray that God “forgive[s] us our trespasses as we forgive those who trespass against us”.  If we seek absolution from God we must grant it to others.  There are many instances in life when this type of forgiveness is warranted – but I question its usefulness when it comes to the deep hurts and offences that result in long lasting trauma.

We are urged to forgive as a path to healing.  We are told that we must not hold onto past injuries or we will be buried by bitterness and anger.   I disagree.

I do not ruminate on the wrongs that have been done to me and those I love – even those that left deep scars on my soul.  I do not harbour thoughts of revenge or retaliation.  I am not consumed with anger, although one of the emotions connected to the hurt, when I chose to visit that place in my soul, is anger.  I trust, I have healthy relationships, I am happy.  But I do not absolve those who caused the deepest of hurts to body and soul.  And in that sense I do not forgive.

I work with people who have intellectual disabilities.  Sadly, the bodies and souls of many of the people who are referred to me for ‘behaviour therapy’ carry the indelible scars of trauma.  One woman I worked with shared with me her story of abuse at the hands of her father and her process of healing.  She talked of being angry for years – and of how the ways that she expressed that anger were harmful to herself and others.  She was repeatedly told to calm down, leave the past in the past, let it go, and to forgive.  She told me that a turning point in her life was when someone validated her anger, telling her that she had a right to be angry about what had happened to her.  This validation of her anger, and not the giving up of it, was key to healing.  She acknowledges that the anger is still there – but it is no longer central and it no longer causes harm.

Recently another young woman, whom I was meeting for the first time, described what she hoped to get out of our time together.  She wanted to know how to forgive the man who had betrayed and hurt her when she was a child.  She had been told that this was the only way she would be able to move on.  And she had tried – really tried – to forgive him, but kept coming back to the fact that what he had done was so horrendous that it could not, must not, be pardoned.  

Can she forgive? Perhaps.  It may come down to her definition of forgiveness.   Can she learn to live without bitterness and anger? I am certain she can.  Does her path to healing depend on whether she can ultimately absolve him of his crime against her?  I don’t think so.

Forgiveness may be linked to healing for some people, I don’t dispute that.  But I think forgiveness is often misunderstood and overrated.  I think that the notion one needs to forgive in order to heal can sometimes be a barrier to, rather than a facilitator of, healing.

Sunday, February 03, 2013

Yo, Doug, Thanks for the Shake Up

Joe and I went to the opera and documented the trip in photos for my Facebook page, I've decided to occasionally do a series of pix with the theme 'Accessibility: the will is the way." Because, I think, if there is the will, the way follows and I wanted to demonstrate that. It was fun taking the photos and sending via phone. This is probably all old hat to you but it's all amazing trickery for me.

Also, through Facebook I found out that Celine, who is someone I met and liked a while back, was going to be at the same performance. We've kept in contact in kind of a really relaxed, semi formal way. We are going to have tea one day, by hook or crook. Anyways we managed to meet before the opera began, but only briefly because when you are seeing a five hour opera, you appreciate them starting on time. It was fun chatting with Celine because we make an odd pair. She's one of those incredibly fit people who run long distances because she likes to, I only tell you so that you know that I am comfortable with diversity.

We met again at intermission, all pretty much bleary eyed, Wagner wasn't into ACTION, so staying awake is part of the challenge. Anyways we mentioned to Celine and Doug that we arrived early to work out any kinks there would be with seating. We've had repeated problems at the Four Seasons Centre so our trust is a tad low. In fact there was a slight problem with our seating, one easily fixed, but still, come on! So when we mentioned to Doug, who does not work in the disability biz, that we have to be fairly vigilant in order to ensure that we get the seating we booked, he looked at us quizzically, and said, "But don't you just book accessible tickets with the Box Office?" Both Joe and I laughed and joked, "Oh, how naive!"

That was that.

But I've been thinking about that little interchange for a while and I'm so glad it happened. Really, really, glad in fact. You see I think I was getting used to the fact that accessibility and accessible seating was a complicated business. In fact, just before we left Joe broke my heart by saying that he'd been worried for a couple of days about what kind of problems we were going to encounter. I never wanted my accessibility issues to become part of his enjoyment of something. But I suppose that's what happens when you have had problem after problem with just getting seats for a show.

But Doug's question brought me back to reality.

Yeah, it should be that simple.

Yeah it should be that dependable.

That's exactly it.

One little remark and I managed to right myself again. My thinking had come unstuck. I began to think that because there are always problems, problems are part of the process. It comes with the territory.


It doesn't.

It should be that simple.

You booked an accessible seat.

You get that seat.

Thanks Doug, glad to have made your acquaintance.

Blog Notice:

Donna Lee takes over the blog tomorrow with her thoughts on Forgiveness. Donna works on my team at Vita and I'm really pleased for you all to meet her and hear what she has to say.

Saturday, February 02, 2013

Voices and Valentines.

(Photo Description: Desmond Bailey, a Jamacian born Afro-Canadian man, standing wearing suit jacket, vest and tie along with dark glasses.)

This is Valentines month and I've already written, in my head, my post for that day- it's one that I never thought I'd write. I'm bringing this up because the new issue of Service, Support and Success: The Direct Support Staff Newsletter, of which I am founder and one of the editors, has just released it's February issue, The Normal Heart: Supporting Love and Romance Within Service Systems. The issue written by one of the fellows who works on my team, Desmond Bailey, is about Romance. Desmond's premise is that we, in human services, often teach people a lot about 'sex' and very little about 'romance.' We all understand that many people with intellectual disabilities want loving adult relationships ... and yet when we teach about those relationships we leave the 'loving' out ... in the same way we leave 'intimacy' out when we teach about intimate relationships.

Shortly after the article was sent out we received an email from a mom (hope you don't mind me mentioning this) who had taken her son to a class about relationships and romance hadn't been mentioned. The article arrived the day after the class and gave her something new to think about and something concrete for her to want to teach her son. I am generously quoted in the article, I don't have it right in front of me here but the quote comes from one of my lectures, "Over all the years I have worked with people with disabilities in the area of sexuality I have never, once, been asked a question to which the answer is 'penis goes into vagina,' the questions I get asked about about relationships, how do I get a boyfriend, how do I let her know I love her ..." People with disabilities ask about the heart and get answers about genitals.

When I approached Desmond to write this article he leapt at the chance. He, too, has supported many people with disabilities who are lonely and want relationships or who are in relationships and want those relationships to have more depth, more romance. He did a great job on putting it together. I joked with him that I wasn't going to show Joe the article because I didn't want to raise the bar for romance in Joe's mind.

But it was just a joke. Joe and I began our relationship under the harsh reality of oppression. Throughout the formative years of our life together we had to constantly fight of any behaviours that would signal that we loved each other. If asked (the right word would be accused) we'd deny our affections. I had a woman friend who would go to parties with me, when needed, something that poured acid on a part of my soul that's never healed. Romantic gestures are often public - dinners, flowers at work, holding hands, a brief kiss at the bus stop before leaving - every one of those had dire consequences - being fired from work, being beaten up, being arrested.

And we kept getting the message that our love would be punished, two friends, in a spur of the moment reaction to good news, kissed each other at Yonge and Bloor, they were surrounded, punched by passersby and, when the police were called, THEY were arrested and their assaulters walked free. The message was clear - behave as if your love brings you shame. We learned that safe loving was making sure that romance was out of view. And we got good at it, we do nice things every day for each others. You might see it as romantic, but to us, it's how we learned to turn a cup of tea into an act of affection - romance under oppresion may not flourish but it can bloom.

In an odd way the lives of many people with disabilities who lived within systems or who were parented by parents fearful of relationships had similar experiences. Men and women would be separated into huge all male and all female wards, an eye was closely kept on any interactions between the genders. One woman, when she realised later in her life that she was purposely kept away from the man she wanted to love, was devastated by the realisation. We did bad things. Bad things that hurt. I know.

So, for me, watching Desmond work away at this article, having the opportunity to work with Angie, the newsletters co-editor, to edit the material and then to see it, when released, be positively received brings a kind of unfettered joy to my soul. We have a way to go, but we've begun. Desmond's goal was to get people thinking and talking to 'get the conversation started.' I think he did that.

If you haven't received this, and you thought you were on the mailing list, I apologise. The newsletter has grown so big so fast that I'm having trouble managing and creating that list. Just send an email to me at Leaving your email in the comments section or sending it to my hotmail or facebook accounts with NOT get you on the list - sorry. If you want to see back issues, just go to Vita's Website and click the tab marked 'newsletter.'

Friday, February 01, 2013

Throwing the Book At You


I've done it.

I now have a Facebook page.

I have avoided doing this for a long time but finally gave in yesterday. I'd had a rough sleep and woke up around two. Seems that the repairs on my power chair didn't work and I'm reeling with the idea of my mobility disappearing so quickly. I just lay there in bed, sleepless, and worrying. So I got up, caught up on the few emails that had come in during the night. Then, with nothing left to do, with hours ahead of me before the world wakes up and gets started, I plunged into the world of Facebook.

I worry with both a blog and a Facebook page that I will become bound even more tightly to a computer screen. I don't like being held captive to the implied expectations of these accounts. I find blogger already takes up a big portion of my day - I'm not sure what Facebook's demands will be but, as I type this at 5AM I'm getting pinged with messages from Facebook already. My account isn't even a few hours old yet.

But doing this did what I wanted it to do, it distracted me from the fret and worry about my power chair. So much of my life is made accessible only because of that chair. The initial repairs already cost hundreds and hundreds of dollars - and it's worse now than it was before it was fixed. Even writing about this stirs the fear in my belly to full flame. Man does this cause me stress and upset.



It took me away from those concerns. I wonder if that's the attraction.

I don't know.

But I'm guessing I'll soon see.