Tuesday, August 22, 2017

Basted Words

We were having brunch at the food court. Gay men can brunch anywhere. I had picked up my tempeh wrap and was taking my seat. One table over there was a guy, about 30, with Down Syndrome. His head was down and he was shaking it slowly.

Two tables on the other side were a husband, a wife and a family friend. They saw the fellow, head down, sadly shaking his head. And wow did they go to town on him:

how sad he must be to be Down Syndrome

how difficult things must be for him

how his parents must be such brave and special people

how lonely and desolate he looks and therefore how lonely and desolate his life must be

they called him a boy when they spoke of him, even though he was clearly a man

They were eating burgers but gorging on pity. And they were loving it, loving basting their words in prejudice and preconceptions.

Then, and this was magical, his wife returned from the bathroom. She saw him with his head down and shaking it. "What's wrong my honey?" she asked.

He looked up from the paper in his lap and said, "I don't think the Leafs have a chance again this year."

I couldn't help it.

I burst out laughing.

I glanced over at the table from which waves of pity had come. They looked confused. Really, really confused.

I love that kind of shit.

Really love it.

Monday, August 21, 2017

Me, My Legs and I

It's hard for me to write about my own relationship with my body. My body has been the subject of so many posts, but always as the object of other people's either revulsion or derision. I want to claim some space and some air time and in doing so I push aside:

what happened in the mall yesterday when I got off the elevator to the horrified expressions about my body by mother and daughter

what happened in the gym when, for the first time another member, one that I've not seen before, came out of the weight room, saw me exercising and burst into laughter

what happened that made me have Joe move to block the view of people openly gawking at me when I was waiting in line to make a purchase

It isn't easy to push these aside. They all call to be written about, but that's not what I want to write about. I want to write about me, and my relationship with my body. It is after all mine and it makes sense that I would have my own issues with where I live.

Many of you know that I've been exercising. Most of the work I've been doing is upper body work but I've been moving into, very limited, lower body work. I discovered I can 'march in place' while sitting in the wheelchair. I can do leg lifts and foot circles. I can, when standing, lean against the wall and do some standing leg exercises. I have to be careful because falling is definitely an option with these ones. So, I am exercising as much of me as I can.

About a week or two ago I encountered a big ramp, long, steep and, I thought, impassible. Then without thinking I turned around and placed my back wheels at the base of the ramp. I lifted the foot pedals to give myself room. Then using my legs and my arms I started. Pushing with my legs, pulling with my arms, I quickly, really quickly, made the top of the ramp. I wasn't even breathing hard.

Later when thinking about it, I discounted the achievement. I had done it with the help of my legs, it didn't count. I used the same technique in a couple of other places and again, I dismissed these as non-accomplishments, I'd used my legs. In my mind, and I was set on this, it's only the arms that matter.

It was then I realized that I was angry at my legs.

I remember the exact moment my legs failed me. I remember having to leave 3/4 the way through a day long presentation because I'd lost the use of my legs. I remember getting out of bed to go to the bathroom and falling down, knocking furniture every which way. I remember being so frightened when I woke up in intensive care. I remember all of that. My legs gave out. My life changed.

Please do not read this and interpret it into the typical disability narrative, I am happy with who I am as a disabled person, I'm even grateful for this journey and what it's meant to me, but standing one day, falling the next takes some adjustment.

In all the busyness of hospitalization and the introduction of the wheelchair and the getting home and reestablishing new routines, I never had much time to think about my legs and their failure and the impact of that failure on my life. And because I didn't, I've discovered a kind of residual anger at my legs. I kind of developed an 'okay, you aren't going to work, I'll show you I don't need you' attitude. It's an attitude that served me well, but it's an attitude that needs both examination and resolution.

My legs don't do what they originally did. But they can add to my mobility, and that's okay. It counts. It matters. Getting up a long, steep, ramp, is getting up a long, steep, ramp. That's all. It doesn't matter how it's done, it's still my body doing it, it's still my independent action that got me to the top. It's still me doing it.

So, I'm working to make peace with my legs.

To accept them as possible solutions to impassible terrain.

And to have it matter to me that my arms and my legs can work together to get me further.

I have legs.

They help me sometimes.

I need to get over that.

Saturday, August 19, 2017

A Visit From a Dog

We have a dog visiting us today. He's a big one, about a year old, and is a combination of coiled muscle and impulse decisions. It's nice to have a dog in the house. It's nice to be reminded of a dog's ability to check out the environment and the people in the environment. Here's what I noticed.

1) He immediately set about finding out what the boundaries were. Where he could go and not go. What doors he could push open and which remained closed. Who he could jump up on and who he couldn't. It's important for a dog to know these things. He was an expert and had it all sussed out within about 5 minutes.

2) He then had to determine where his stuff was, the things that gave him pleasure and comfort in equal measure. He found the ball. He found his stuffy toy. He found his bedroom. You could see him relax knowing that what was important to him was here.

3) Then he set about measuring up the people around him, especially the two new people. He cared little for any of the superficial things. He wanted to know who was the easiest touch for a treat. Who was a sucker for his eyes, when he made them look sad. Who was willing to put things down to pet him. Who took instruction well about where he wanted to be scratched. Who had a safe touch. What had a safe tone. Who would care for his needs - get him outside and let him back in. He had that done quickly too. Smart dog.

The dog entered our home with no prejudice. He simply wanted to know who we were and how safe the place was. He did that by our behaviour. What we looked like. Who could walk. Who was fat. Who was bald. Who had the most refined nose. None of these things matter.

He looked at what we did.

He looked at how we responded.

Then he determined if this was a safe place to be.

Funnily enough, as a disabled person, I realize, I need to do exactly the same thing.
Talk is talk. Words can be beautiful. Mission statements can be read with the national anthem playing.

Beauty is just beauty and it doesn't mean anything else. People act like it does, but it doesn't.

It's what we do that mattered.

Now excuse me, he's here and looking at me with big eyes ... he knows I'm the treat guy. Can't let him down.

Wednesday, August 16, 2017

What We Both Saw

Zero tolerance for bullying! I hear that so often, and when I hear it, it is said with determination and there is fire in the eyes of the speaker. They say it. They believe it when it's being said and they know it's the right thing to say.

But that's the problem with all of this isn't it?

Words.

Sometimes they have meaning.

Sometimes they don't.

I was watching kids playing in a pool, it was a summer camp activity. I knew this because there were camp staff with them in the pool. I could easily identify them as camp staff because they all wore singlets with the words 'camp staff' on them.

Right in front of me I saw a bully standing under a devise that, when full, dumped a blast of water on whoever was below. He was centered directly under the dump bucket and was taking, to his delight, the full impact of the water. There were kids around him, pushed in close, who were taking the left over splash. The brave ones tried to get closer and the bully elbowed them hard and they moved back. This was his and he was keeping it.

This was seen.

I clocked three of the camp counselors notice this.

But nothing happened. They made no move. Two shook their head in disapproval, but that was the extent of their action.

But there was a boy, with a disability, who was in the pool, several feel away, who saw what I saw. A bully using force and entitlement to take from other kids the experience of a direct blast of fun. His elbows and his attitude were his weapons, his expectations of inaction by the staff was an integral part of his strategy for domination of that area of the pool. The kid with a disability saw all this.

He was accompanied by a staff. He got their attention and he pointed. It looked, from my viewpoint on the other side of the glass, that he didn't use words to communicate. He pointed, they saw and looked away, he pointed again, and they looked away again. He was getting frustrated and it showed.

"Tell the staff,""Tell someone in a position of authority" is one of the strategies we teach children, people with disabilities, and each other. It's a common sense strategy. If you see or experience bullying, or violence, or abuse, report it.

But bullies, and aggressors, and abusers, know that 'zero tolerance' often means 'zero acknowledgement' that people will simply 'not see' what they 'don't tolerate.'

That child, the one with the disability, was the one kid in the pool that did what needed to be done. He clearly took responsibility and because he did he SAW what was happening and he took action.

But that's where the action stopped.

Then, the whistle blew and the kids clamoured out of the pool.

I saw the bully standing, smiling from the fun he had. I'm not sure if that fun was the water bucket or the fact that he had it to himself.

He won.

Everyone else lost.

And he knew it.

Zero tolerance doesn't exist if there is zero determination and willful, purposeful, refusal to see what won't be tolerated.

And maybe we need a new strategy.

Maybe we should be promising something different, not 'zero tolerance for bullying' but 'zero tolerance for inaction' to the issue of bullying, abuse and social violence.

That's what I'd like to see.

That's what I'd like to experience.

That's what may make the world a little bit safer.

Tuesday, August 15, 2017

A Story Unprompted

My father joined the Canadian Forces when he was 19 and served overseas during WWII. This was something he never really talked about with me, even though, as you can imagine, I tried. I was interested in where he'd been and what his experiences were and he was interested in not talking about it. I understand many vets were reluctant to tell their stories and my father was one of their number.

During his time in the hospital he did talk a little more about being in the war. I had brought up the movie "Dunkirk" and he said that it was good for people to remember. Then he talked a little more about his experiences, not much but more.

I want here, in this last post I'm going to write about my Dad, for now, I want to remember a brief conversation I had with Dad about the war when I was just becoming a teenager.

First though, let me say that I never heard my father utter a racial epithet. I'm not saying he never did, I don't know that, I was a boy and know only how he spoke around children, I no nothing of how he spoke around other men, but I never heard him. This is noteworthy because, of course, I heard those words elsewhere and I heard them used unchallenged. It was somewhere around 1964 when I was about twelve that I had a conversation with Dad that I have always remembered and in a sense, it has guided me.

We were speaking about a report on television about racism. Out of the blue, and without any of my persistent questioning, Dad told me a story. He said that when he enlisted he expected to find camaraderie amongst his fellow recruits. He did. This was a war with Germany. His was a German last name. He found himself expelled from the social life of his unit. There was another fellow experiencing the same thing. A black man, also Canadian, also enlisted, also excluded. They hung around with each other at first by chance and necessity and then by choice. They liked each other. But my dad notice that while he was socially excluded, his friend experienced exclusion accompanied by force. Dad never felt endangered, but he knew that his friend did. He hated that.

My dad said that the saw first hand what prejudice did to people. He had tasted it but he'd seen the full measure of its cruelty inflicted on someone he cared about. 

That was it.

I wanted more.

I didn't get more. I don't know what happened to this man. I don't know what his name was. I don't know if he made it through the war.

I did know, though, that war changed my father. Both on the battlefield and in the barracks my father got a glimpse of the various kinds of horrors that humans do to humans.

I'm not sure why he told me that story that day.

But it mattered to me.

Then.

And now. 

Monday, August 14, 2017

My Father's DNA

I don't know why I found it so hard to ask, but I did. It took me several weeks, or maybe even months, to make the call. But I did.

A little over a year ago I joined a big study done through one of the major hospitals in the city of Toronto. It was a study involving what doctors lovingly call 'morbid obesity' and I had been approached to be part of that study. The study consisted of filling in a lot of questionnaires about life and weight, some of the questions being quite personal.It also involved an interview and a blood test.

The people running the study, well I guess I should say the nurse who is my contact to the study, is a truly kind individual who has never treated me with anything but real respect. She is easy to talk to and takes a genuine interest in me as a person. A while ago I was informed that they had found something in my DNA that they were zoning in on as it seemed to be present in others like me as well. So I was asked to consider asking my family to participate in the study by providing DNA samples.

Yikes.

That's a really personal request to make of someone.

And, it would involve me making myself quite vulnerable in talking about the study, about my weight and about the process of gathering DNA.

I finally made three calls.

I called my mother first. I explained to her the study, I explained what she would have to do, I explained why I thought it was important.

She agreed. Quickly and absolutely.

I called my father next. He was in the hospital and I could hear the sounds of the daily goings on in the ward behind him as we talked. I told him all he had to do was spit in a tube and that was the end of it. He said, "I guess I'll spit anywhere you want me to." That was that.

Then I called my brother. I left him for last after informing the nurse that my parents had said yes and did they want my brother. They did, I called. He like the others agreed quickly and easily.

As my father grew more ill, my brother called and said, "If you want Dad's DNA sample you better have them send the equipment quickly. I wrote the nurse and email, gave an address and encouraged her to send the DNA kit quickly.

It was clear, to all of us, that Dad would not wait for the mail to deliver the parcel with the materials that were needed for the study.

The night before he died, my brother, his wife and my mother had stayed at the hospital in the evening leaving the next morning. My brother sensing that he should go back, did. An hour before my father died, they discussed the DNA test and how much it seemed to mean to me.

They called the nurse and explained the situation. They asked if it would be possible for them to collect a sample of my father's DNA for the study. The nurses at Campbell River Hospital have been incredibly kind and compassionate through my father's long stay and they didn't blink an eye at the request. The nurse hurried out and then came back and took the sample.

It was done.

Minutes later my father died.

This act of generosity on the part of my brother and my father, in the minutes before my father's death astounds me.

Astounds me.

Sunday, August 13, 2017

My Father's Slippers

When I was a boy. An immature boy. I had no idea of what real adult love was like. And I had no idea of how my own cruelty would stay with me, permastamped in my memory.

This is a story of the boy I was.

And the man that my father was.

It was Christmas. I had bought, probably with my mother's assistance, my father a pair of slippers. I am convinced that, if not for slippers, fathers may never get a gift. Anyways, they were wrapped and put under the tree. On Christmas morning my brother and I woke to a bounteous harvest of presents under the boughs of the tree.

I remember little of the gifts that I got, or the dinner that we ate, or the activities of the day. I remember only one scene. It was of my father opening my gift and putting on the slippers. I was delighted by the fact that they fit perfectly. My father expressed how he'd never had a pair of slippers fit quite so well.

I was chuffed.

I noticed when Dad got up to go to the kitchen that it looked like the slippers were much too tight. When he sat down, he took them off and discovered that there was paper tucked into the toe of each slipper. He pulled them out and I laughed at him. I thought him silly. I thought him dumb. How could he have not noticed that the paper was in the slippers. I acted like an arrogant, foolish, bully. My dad said nothing of my behaviour, but I remember the look in his eyes when he looked from the slipper to me.

It was only later that I realized that my father had pretended a good fit to please me. He wanted me to feel happy about the gift that I gave him. He wanted me to have a good Christmas and so he put up with a bad fit, he was acting gracious and kind.

And I mocked him.

As an adult I understand how, sometimes the gift we want to give to others is our appreciation, our gratitude, even if the fit is a bit tight.

As an adult I understand why my father did what he did.

And because I understand that, I understand how mean and stupid I was in response to my father.

But I learned.

The pain I feel for having been that boy at that moment has taught me something.

About grace.

About kindness.

About how to be a good man.

Saturday, August 12, 2017

The Gift

I remember the exact moment that the picture was taken. Joe and I had been visiting my father in the hospital and just before we were leaving, I asked if I could have a picture taken with him. He agreed and that set about the monumental task of moving things around, in a tight space, so that I could get myself and my wheelchair into position. So, while that happens, let me give you some back story.

My father, when he died, was 93 years old. Joe and I have been together for 48 years. That means when we got together in 1969, a few days before the Stonewall riots, my father was 45 years old. They were different times. In our corner of the world the preferred slur used about gay men was 'fucking gear boxes,' and, though it may not seem it from reading the words, they were always spoken with implied violence.

It was a time of hiding. The idea and concept of 'coming out' was foreign. But there Joe and I were, barely 17 years old and living, hiding, in plain sight. We denied any accusations regarding our relationship. Good friends and buddies we were. Our first year together we both decided not to go home for Christmas, to break away early, to establish ourselves both as independent and as a couple. It was a rough holiday with a lot of people very angry at us. We had a lovely dinner.

So, in my home, there was simply silence about Joe, about our relationship. The silence was absolute. I couldn't live with so much silence and with so much of my life being hidden away, so I went home less and less often. Other things played into that but I need not go into that here.

I told my parents when Joe and I got married a couple years back and the response was that they thought we already had been married. I said that I wouldn't have gotten married without their knowledge. The silence had finally and forever, been broken.

When Joe and I visited my father in the hospital Dad treated Joe with respect and ensured that he was always included in the conversation. It may have been the first time that I saw Dad fully comfortable with Joe and it felt good. Then, I asked for the picture.

I'm finally beside the bed and I lean over. I place my hand on the bed for support and was surprised to the point of shock that my father took my hand. He doesn't do that. Joe, never good with electronics, was struggling to take a photo. After a few desperate tries I could see his growing frustration. My hand was holding my father's hand the whole time and he made no effort to pull away while Joe fiddled with the phone. I then said, "Joe you'd better take the picture quickly or people with think we're on a date here."

My father cracked up. He laughed loudly and Joe snapped the picture.

I will remember that photo because it's of my father holding my hand and laughing at a gay joke.

Many people have commented on how happy my father looks in the picture. I think he was happy. Not just because of the joke, but because, for all his earlier misgivings, he knew that I was loved and cared for and he need not worry about me and my future. 

That was his gift to me and mine to him.

Thursday, August 10, 2017

Dad

Photo Description: I am sitting beside my father in his hospital bed. He is holding my hand and we both are smiling.
My father died yesterday morning.

I went to visit him when he fell really ill a bit ago. During our visit we had a chance to talk and there was something, quite private, that I wanted to say to him. I don't think that we know what to thank our parents for until we are well into adulthood, I wanted to do that, and I did. That felt like an accomplishment, but it also started a series of conversations, over the phone with him. Conversations that I will now miss dreadfully.

Over the next few days I plan on writing a bit about who my dad was, or at least who he was to me, as his youngest child. But right now, I concentrating on learning how to live in a world without having a 'dad'. He lived so long that I almost believed that he's always be there.

Monday, August 07, 2017

A Moment

I was pushing towards the washroom, rushing, when I saw a young mom with her son. He was looking up at her talking. Then he looked and saw me. He came to a dead stop. His finger went up, pointing directly at me. He called for his mother to look.

She looked down and saw him, thunderstruck, then saw me.

"Yes, honey, he's different than you, she said, "He's wearing a green shirt and you're wearing a blue one."

He looked at her with a "What The Fruit Loops Is Wrong With You" look on his face.

She, however, just continued on, him in tow.

Sunday, August 06, 2017

A Boy, A Dragon, And Magic

He was still young enough to be sitting is a car seat. He probably believes in dragons, and fairies and magic. He is the age where the world should be full of wonders, and fun and, unaware of the work of his parents to make it so, safety.

But the world isn't safe.

And he knows it.

Already.

He is standing outside the car parked outside the movie theatre. He is excitedly talking about the movie. But then he notices being noticed, being stared at, being singled out. He stops talking, he buries his face in his father's pant leg. Dad reaches down and picks him up. Mother quickly looks around and spots those who are staring. She looks a them with disgust. They turn away. Unashamed. Uncaring.

 I don't understand.

Different is just different.

Why the need for cruelty?

And no, it wasn't 'noticing' that happened. Noticing is an involuntary recognition of something or someone. I notice when people are tall, or red headed, or fit. So I of course expect people to notice that I am fat, or bald, or a wheelchair user. But notice turns away without judgement. It registers without evaluating. Noticing eyes don't linger, don't attack. Staring is a choice. An active choice. Seeing a little boy with Down Syndrome get out of a car in a movie theatre parking lot is one thing, staring at him is another. It may feed your selfish sense of superiority or pity or gratitude to your God. But it poisons the world for him,

A child who sits in a car seat.

A child who believes in dragons.

A child for whom magic will die too soon.

I push my chair past their car and the little boy notices me. He points, then smiles, then waves. I keep moving but wave back. I smile. I give him a wink. He laughs. His mom looks to me. I don't think she noticed at that moment anything much about me, but her eyes said 'thanks.'

They shouldn't need to.

They shouldn't need to.

They shouldn't need to.


Saturday, August 05, 2017

Behind me

The argument happened behind me.

I was rolling up a ramp and paused to center myself and push over the door sill. At that moment a couple came out of the building and seeing me pause, the woman asked if I needed help. I said, "No, thanks but I'm good." She nodded and kept walking and I pushed up and over the sill and was continuing in. I heard this behind me.

"No," she said, "he doesn't need any help." I don't know because I didn't see but I presume her husband was going to grab the back of my chair to 'help' me.

"No, don't," she said insistent.

"I'm just going to help him."

"I asked and he said 'no'" she said.

"He probably didn't want help from a woman." he said.

"HE SAID NO!" she said loudly, angrily.

"Alright, alright," he said, "no reason to get upset I just wanted to help the guy."

"He said 'no' you were right behind me, you heard him, he said 'no.'

"Yeah, yeah, 'No means no,' I get it."

"No, no you don't," she said, crying.

They went through the door I went into the lobby, and it was over.

But let's review.

'No means no."

Review over.

Friday, August 04, 2017

What's Wrong With This Picture

I went to the movies yesterday. We rushed in, headed to the washroom, and then took our seats. Something felt wrong about the whole experience. I couldn't place it but something was missing. I pushed that aside because we were at a movie, Wonder Woman, that we had wanted to see a long time. Now was the time and I wanted to enjoy it.

And I did.

(Except did the villain have to be a bitter woman with facial differences? Talk about a group of people stereotyped as scary and evil. Shit.)

Then afterwards we talked to a few people about the movie and left. Again, going through the theatre I felt odd. Something wasn't right. Something was missing.

Once home I realized that there were no people with disabilities working in the theatre. Not one in a visible role. In my local theatre several people with disabilities hold jobs, a proud young man with Down Syndrome does whatever they do when they come into a theatre and look at something on the wall and leaves. An equally proud woman who does several things, including ripping tickets and directing traffic. I am used to seeing a diverse work force in the theatre.

The theatre I went to clearly had a different hiring policy.

And the sad thing is that those that go to that theatre to watch movies won't know what's not there because it isn't there. People are used to work forces that aren't inclusive. Because of that they may never ask why people with disabilities aren't given the chance for jobs there. They can't protest when they accept prejudice and discrimination as the norm.

Missing and disappeared - that never happens by accident.

Thursday, August 03, 2017

NUTS!

Just before we crossed the border we stopped at the Duty Free. The primary reason for the stop was that I had to pee. We pulled in and I got out and then rolled down a hill, the enjoyment of that was tempered by the knowledge that I'd have to go back up, and then entered the store. We found the bathroom at the furthest reaches of the store and then Joe went shopping for a suitcase (a 24 case of beer for those of you who may not know Canadian idioms) and I wandered around.

They had an amazing display of liquour bottles and I was looking at some of the fancier bottles. I may not drink but I can still look at the bottles and recognize some brilliant designs. I was browsing. Then, feeling watched I discovered that I was being watched. A couple, a few years younger than me, were paused with their cart looking at me disapprovingly. 

I looked up at them and they weren't at all embarrassed to be caught out watching a random stranger in a public place. In fact they seemed relieved, now they could get their message to me. He pointed at the bottles while she wagged her finger at me. WAGGED HER FINGER. Like they had the power and the right to tell me that I should not be buying booze. Like they were fulfilling a public duty to keep cripples from intoxicating drink.

It made me want to wrap my lips around a big bottle of Knob Creek and take a swig. 

I didn't but WTF.

I joined up with Joe and then went in search of peanuts. I wondered if they'd approve. All I could find was maple syrup flavoured peanuts, and if there are Canadian Nuts, they aren't maple flavoured.

The constant monitoring, the constant need of some non disabled people to staff our freedom is remarkable. 

I went nutless into the car park, partly because they didn't have want I wanted, plain old salted ones, and partly because instead of doing anything at the finger wag I just turned and left. They probably felt that they had successful.

Part of me hopes they they drive away with maple nuts stuck to the roof of their mouths.

I mean, shit.

Wednesday, August 02, 2017

Disengage

Sometimes it just seems easier to disengage. I notice, at times, when I'm in a group of non disabled people who are actively not noticing my difference and the only way they can do that is by not noticing me, it's a real fight to speak up, to be heard and to be taken seriously. It can be exhausting being both highly visible and completely invisible at the same time. And sometimes, it's just easier to sit back in my chair and to disengage. Socially, for me, disability means disappeared an awful lot of the time.

I do have energy and I do have voice. But it takes extra energy and an almost strident voice just to make a statement that is incorporated into the broader conversation. Most people I'm sure have to work to make their voices heard but there is a 'standing supremacy' that leads to the privilege to dismiss people like me, with voices closer to the ground.

This doesn't happen to me at work.

It doesn't happen to me where my role is known and valued.

I'm speaking of ordinary social situations.

I don't expect people to defer to me, if that's what you are thinking. My disability doesn't make me more important than anyone else and it sure as hell doesn't make me less important. Sometimes I just want to be part of, rather that actively, purposely, intentionally, included. I don't want it to be 'work' to hear my voice and I don't want to work harder than anyone else for my words to have impact.

Sometimes it just seems easier to disengage.

We are, or it may be just my perception, not made welcome in public spaces. There are barriers to entry. Stairs to building is one kind of barrier to entry. Running the "gauntlet of stares" is another kind of barrier. But the barrier that seems most daunting is an unramped entry to social existance.

Tuesday, August 01, 2017

I Never Saw Her

She didn't stand out.

I didn't even notice her. I'm a people watcher, I'm curious, and a bit nosy, and I didn't even notice her there. I didn't notice him either. They were just part of the scenery, just part of the crowd.

That meant something that mattered.

She had an intellectual disability, though her disability would be invisible to others, and she was being supported by staff in a very busy mall. She may not look like she needs much support, but she does. It may seem that going to the mall might have not have been a really big deal for her, but it was.

She looked happy.

She looked successful.

I know this because they came into my consciousness when she and her staff stopped to say hello. I saw her smile and her sense of confidence and accomplishment. I saw that she had a shopping bag and he didn't. I saw that she enjoyed being out without being "out". I saw a staff who  managed to support and not diminish, to provide help without self aggrandizement, to be there for when she needed without being there and 'performing staff.'

She didn't stand out.

After we all talked and it was time for them to go. She turned and led the way. She did it like she didn't expect to be called back, she didn't expect to be corrected, she didn't expect that her leadership to be challenged. He quickly caught up to her and then they were gone.

She didn't stand out.

But he did. Not to anyone at the mall but as a role model to every staff who goes out, every staff who supports someone in the community, to every staff wanting to know what excellence looks like.

The hierarchy so often on display when we are in public with those we serve, or those we parent, can be the first finger to point difference and disability and diminished.  The hierarchy, well managed, can demonstrate, respect and value and worth.

She didn't stand out.

His power didn't stand out.

She led because she knew, that the support she needed, would follow.

Monday, July 31, 2017

One

Yesterday, at the gym. (Now there is a statement that, at one time, I could not imagine myself saying.) Another disabled guy rolled in and scooted up the ramp. He stopped and introduced himself and I said that I was glad  not to be the only wheelchair user there. He wholeheartedly agreed. I was working on one machine and he was working on another nearby. We began to chat.

As we both talked about why we were working out, we discussed primarily maintaining or improving the strength we have as disabled people to keep ourselves mobile and safe. Falling down and getting back up being a big one for him and rolling long distances without assistance being big for me. We further identified issues that were peculiar to each of us and our needs as disabled people.

The folks who are there running the gym are quick to give assistance and advice. They are helpful and friendly and surprisingly quite kind. (These were not things I was expecting.) I appreciate what they do. But this chat was different, it was nice to talk to someone else with a similar mobility disability, it was nice to talk about muscle groups that needed working and the importance of doing everything we can to maintain what we have.

His disability is different than mine, of course because all disability is idiosyncratic, and he can transfer onto the machines. It was cool to see the scooter sitting beside the machine, empty, waiting, like a service vehicle, for it's master's return. It was cool.

While we were there a couple came in, maybe in their 40's, she used a walker, they were there to tour the gym to see if it might work for them. The look of real happiness on her face as she stood at the top of the ramp and saw two other disabled people working out amongst all the rest, the young, the strong, the fit. I don't know if she thought that this was integration or inclusion or whatever, but I know she saw something that mattered, a place where she wouldn't be the only one.

Sunday, July 30, 2017

Back Down

The ramp up and in to the grocery store where we shop is a bit difficult to manage. It's rough where the end of the ramp meets the roadway. My solution is to back up, using the big tires to go over those bumps is much easier for me. It garners stares and unsolicited offers of help, but for all that, it gets the job done. We were there yesterday with Ruby and Sadie. We had a short shopping list and managed to get around, breaking up for a 'scavenger hunt' for a few minutes, and then, we were out.

The space between the cash desk and the windows is uncomfortably small. I can't wait at the end while groceries are packed because I feel that I'm in the way. So as I usually do, I head out to the lobby and wait there for the rest to join me. When they do, there is chatter, lots of chatter, I've been apart from the group for less than five minutes but there's lots to say.

I leave with them. I am surrounded by two kids and a husband. I turn the chair around and this unexpected turn catches the attention of a young woman outside the building. She looks at me with a bit of confusion. Joe and the kids are with me but behind me now, closely behind. I am saying, "make sure that I get down safely, it's a bit steep, and watch for cars I don't want to be smushed by someone racing by in the parking lot.

I don't notice that the young woman is approaching me with real fear in her eyes. I realize that she thinks I'm talking to her. That I just randomly ordered her to assist me. I look at her and said, "I'm not talking to you, I'm talking to the people here I am with." The relief on her face was immediately evident. She rushed back to where she had been standing.

Part of a group, but seen as solitary.

Part of a family, but seen as alone.

I am so astonishingly visible yet those who are with me are inconceivably invisible. Because disabled people live desperately lonely lives.

And some do.

But loneliness isn't the 'hallmark' of disability.

Shocking news:

Prepare yourselves:

Non disabled people are often isolated too.

But this inability that so many people have in seeing me as a part of a social unit instead of apart from a social unit always worries me. It feeds a fear of disability and being disabled that goes to the heart of the prejudice against us.

But this time, because she looked so tense and so shocked to be ordered into assistance and since the transition of her face from 'oh my God' to 'oh thank God' was so quick to be comic. I thought it was funny.

Saturday, July 29, 2017

The Playground

I now have medical confirmation that by working out regularly I am increasing my strength and overall fitness level. I can't tell you how good that felt. You know what that means ...

It means that I'm still stuck at the idea that the opinions of others trump what I already know to be facts.

It means the approval of others trump the positive self talk that I do after finishing a routine or accomplishing a new goal.

It means that I'm still a five year old looking desperately for the approval of others.

I could say, and it wouldn't be true, that what I got was the 'validation' of what I already knew to be true, but I won't because it was the APPROVAL that really mattered to me.

I know that I can push myself further than when I first started. It was about 4 months in that I reduced the amount of support I needed to get around an airport, it was about 2 months after that that I stopped needing any at all. Notice the accomplishment? Check Self validation done? Check. And. Check.

I know that I've gone from using insulin to not using insulin and that I've been insulin free for well over a year. I know that all of my other drugs for diabetes have been lowered and, then, some eliminated all together. Did I make note of this? Check. Did I give myself approval. Check. And. Double Check.

I know that I can do things that I couldn't before. I can pick stuff up off the floor from a standing position if I have something to brace myself and that I can push my wheelchair foot pads from up to down myself. Did I pay attention to this? Check. And. Check Again.

These are only a few of the indicators that the elimination of sugar and the inclusion of exercise into my life has done. I know that I feel differently in my body and more powerful in my life. I KNOW IT.

But, I now have a medical opinion that I'm fitter and stronger. And NOW it feels real.

I wonder if I'm destined to wander in the empty playground of first grade looking for someone else to point the way and someone else to pat my back. I hope not.

I'm 64.

Can I grow up now?

Thursday, July 27, 2017

(Not) Alone

I have only one voice

But I'm not just one voice

Yet

When I speak out

I feel alone

When I stand firm

I feel alone

When I refuse to cede space

I feel alone

I am only one person

But I'm not just one person

Yet

When I take action

I feel alone

When I risk confrontation

I feel alone

When I refuse to back down

I feel alone

When I declare myself human

I feel alone

And then

Suddenly

I don't

And then

Suddenly

I feel my community

I feel the history of our defiance

I feel the strength of our numbers

One

By

One

Feeling Alone

And never actually

Being

Alone

Wednesday, July 26, 2017

A Very Short Story

Her daughter said to her, "You go ahead and get a table, I've got to take a quick trip to the washroom." We heard this because it was said just beside us. The mother being addressed waved her daughter off and then began a very slow walk into the food court. She wore slip on bedroom slippers, she used a walker, and her hair looked like it was just growing back in. She walked slowly and carefully, she smiled at me and said, "Nothing keeps us down and out does it?" I laughed and said, "No, nothing does." She continued on her way.

A couple of young boys (men) of maybe 17 or 18 years of age walked by her and took the table next to her. When they sat, they were looking at her and laughing, the one seated nearest to me said, "Yeah, go to the mall and pick up hot chicks." That broke the other into hysterics.

I turned and said, stonily, "Yeah, go the the mall and pick up an asshole."

I'll let you imagine what happened next.

Tuesday, July 25, 2017

A Quiz - What do You Think?

Yesterday, I was watching a television program, one that I really love, and was enjoying the fact that they finally had a character with a disability. Now I didn't look up to see if the actor was also disabled, sometimes I just want to be an uninformed member of the public, but I did notice that he certainly knew his way around a wheelchair, using at different times 2 of the 3 preferred pushing strokes that wheelchair users typically use. So back to the program.

He was introduced in the second episode. Killed in the third as victim number two of a serial killer. I was so mightily disappointed, I liked the character and how badass, yet complex, he was. So we watched as the cops went through his apartment looking for hints and clues. Weirdly, Joe and I too became detectives.

We wanted to see if the set designers got it right. Could this actually have been the apartment of a wheelchair user? The first shot of the bathroom was too quick to make any kind of assessment. There did seem to be enough room for a chair to get around but then, the cops went into the bathroom. One with absolutely no adaptation for a wheelchair user. Not a bar in sight, no adaptions to the toilet at all, no possibility of shaving at the sink, the tub had a impossibly high step in with no grab bars to steady oneself.

Shit.

The show completely missed an opportunity to show what an adaptive apartment is, what it looks like. At no time did the cops say anything about wheelchair spaces or tire marking, or anything related to the wheelchair. The spoke of him as a character, but if you read the dialogue you'd never know that he was in a chair. Some see this as progress, I see this as erasure. Of course cops would be talking about his disability, his vulnerability to an attack like the one that killed him, the patterns of his movements and what his level of mobility was - it would matter to determine where he might have been before the murder and where he was planning to go that night.

Shit.

I'm glad that there was a character on the show, I wish he could have been around a little longer and I wish his life had been better represented.

Is it wrong that I'm still a bit grateful to have seen a character on a show that I like that I could identify a little bit with, even if they made a lot of mistakes about living with a disability?

Monday, July 24, 2017

Inconvenient Lives

Saturday Morning:

We were directly behind them in line. It was busy in the supermarket so the line ups were long and the waits seemed longer. At first we thought he was on his own because he was standing with his cart, by himself, staring into his phone. But about five minutes later his wife arrived. She used a walker and in the walker's basket she had tucked away some other groceries which she put into the cart, he didn't look up when she arrived, didn't acknowledge her in any way. After she was done, she turned her walker and sat down. She was clearly tired.

When the line moved, he quickly moved the cart ahead. We had to wait as she got up, steadied herself at the walker and then moved up to join her husband. He looked at us with a pained expression, then looked to her, and back to us, and rolled his eyes. Then, he went back to his phone. He had still not spoken to her. I was shocked that he rolled his eyes about her to me. I'm sitting in a damn wheelchair and somehow he wanted me to share in his tiresome gift of patience for his wife's slow movements.

The was a kerfuffle at the counter and the wait drew on. She, seated again in her walker, attempted to talk to him, to engage him in conversation. He, still looking at his phone, put his finger up to indicate, "just a minute" but really it meant "shut up and leave me alone." She was mortified and humiliated by his behaviour. She knew we had seen and tried desperately not to look at us. She started to mumble under her breath cursing her "G-d damned disability."

He did finally speak to her, only to tell her that she was in our way, he spoke sharply. I sharply responded that she wasn't in our way at all. He looked at me and then her and then smiled and shook his head.

Sunday Morning:

I'd seen her before and she has always been friendly. When I arrived she was doing what she was doing on her own, listening to music through ear pods. I noticed another fellow there, about her age, which was also about my age. He too was doing what he was doing, plugged in to music. She then moved to another activity and he, when she walked by her, gave her a thumbs up and a smile. It's a place where people encourage people so that wasn't unusual.

A few minutes later, she was having trouble with the machine she wanted to use, and he got up and walked over to her, smiled and helped out. I couldn't hear what was said but they were both laughing. He was a handsome, and very fit, man, grey on the sides and a ready smile. She was a pretty, fat woman, freshly blond who also had a ready smile. They both, at different times, helped me out when it was needed.

During the time we shared space they went back and forth to each other, him encouraging her, she kissing him in thanks. It was lovely to see the interaction. Others in the area, were quite dismissive of her, her weight being a problem for them. They do that less with me because my disability makes me inspirational and that's the story they seem as a group to want to tell.

Thinking About It:

Two husbands.

Both with wives who have differences.

I'll bet you feel very differently about the two men. I'll bet you have made judgments about how they treated their wives, I know I did. Let's look at what they did.

One did all he could to communicate the burden his wife was, the fact that he saw her as barely human was also clearly expressed. He is educating the public, or rather confirming the bias, about disabled people as spouses. We destroy the lives of those around us, we suck the joy out of the air, we just selfishly refuse to die to remove our inconvenient selves.

The other, with no effort at all, because it takes much more effort to communicate displeasure than pleasure, let everyone know that he was proud of, and that he loved his wife. Fat or no, other's opinions or no, he loved his wife. He too was educating the public, or rather he challenged stereotypes, and with a simple loving gesture he put paid to ignorance.

STOP!!

It is so easy to see how the men behaved and to recognize how one hurt while the other helped. It's easy. But do you apply the same standards to yourself?

What if these people were Direct Support Professionals out with someone they say that they serve. One on a cell phone, one burdened by tasks they are paid for, one letting people know, that even when salaried, disabled people are nearly not worth the trouble. The other attentive and helpful and encouraging and communicating respect and care, with every action communicating that difference is just difference and that difference doesn't preclude respect.

I wonder if  DSP's realize sometime that every time they go out in support of someone with a disability they are educating the public about the worth and value of the people they serve. An 'outing' is never simply an 'outing' ... it's much more than that, it's where you begin to fulfil the mission of every agency who serves people with disabilities, that of creating a world where people with disabilities are valued and respected.

Every time you go out, you change the world, for better or worse, you change the world.

Yes.

It's that big.

Sunday, July 23, 2017

Wanna Be My Friend?

I need to figure out how to be gayer.

It's been years and years and years since I've been out of the closet. Even so I keep getting 'friend' requests from young and very buxom women who urge me, in no uncertain terms, to admire their beauty and hint at the availability of much closer contact.

To say that I'm spectacularly not interested is a massive understatement. Kinsey developed a 6 point scale between exclusively heterosexual and fabulously 'to the last drop' homosexual, and on that scale I'm all musicals, muscles and moisturisers. People often say that I don't look gay, and I always think, well you don't look ignorant. Let me assure you I look at the world through a gay lens, and my world is pretty.

Enough of that.

From the outset these 'friend invitations' bothered me. The girls are all so young, well, young to a 64 year old man. They, none of them, look fragile, but I think that may be hidden behind the makeup and the costumes they wear to entice males to click the button connecting them. I wonder if they worry about who might be clicking 'friend' I hope they are worried about who is clicking 'friend'.

They all look so young.

I never accept the friend request, I always indicate that the request was 'spam' when asked by Facebook, and I worry that I might be making moral judgements and that I should just leave it at a declined friendship. Yikes, why is my natural reaction to think about the ramifications of what I'm doing. But, whatever, I consider the requests spam and wish I wouldn't get any more.

Not because they mistake me for a potential much more than friend.

But because they are so freaking young.

Some of them look like they've just left the playground and now are on very dangerous ground. If there are trolls on the Internet there are the truly dangerous in the real world.

Do any of the rest of you get these and what do you do in response to those requests?

Saturday, July 22, 2017

A New Everest

A little over a year ago I wrote a blog post about my attempt to push up a really long and very steep ramp. As I described then, the ramp is so long that they built a flat section about 2/3 the way up so you can rest before attempting the last part. The last part changes pitch a bit and is considerably steeper that the bottom part. When I wrote about it, I wrote about making it part the way up. I wrote that I knew one day I'd have the strength to make it all the way. That trying and nearly making it wasn't failing, it was trying and nearly making it.

It's just over a year later and I've tried the ramp a few times over the year, each time just about making it, each time needing help to finish. Last time I tried we were with Ruby and Sadie and I asked them to stand at about where they thought I'd have to stop. Sadie, as it turned out, had little faith in my strength and I passed her marking, Ruby set my attempt as ending just a little above the flat rest space and I passed it too but not by much. Both girls were thrilled that I got as far as I did. They too saw it as a successful attempt.

Yesterday, after work, Joe and I were back. I started up while Joe parked the car and he was back about the time I hit the rest spot. I told him that I thought that today was the day and I asked him not to help even if I'm clearly struggling. I assured him I would ask.

So.

I began.

Making the rest spot was tough pushing, like it always is, but it's pushing knowing I can do it. As I began the last part, I didn't have that faith in myself. I didn't think I could do it. It's really steep, I'm really heavy, and I'm tired out from the first part. But I inched closer and closer to the top. People turned to look because of the sounds I was making as I part pushed, part pulled my way up. I passed my previous high point and almost decided to stop, but I didn't. I cleared the top. For the first time. It took a year for me to get the strength to do this but I have the strength.

I felt a bit nauseous from the strain and had to stop for a second, but it went away quickly and we continued on. This morning my shoulders are sore, but it's a weird kind of sore, it's like my body saying, RAH. That probably makes no sense at all.

RAH (ouch) for the prior attempts and RAH (ouch) for making the top.

I need a new Everest.

Friday, July 21, 2017

A Honking Big Piece of Pie

A research study was recently published that showed that one quarter of non-disabled people avoided conversational contact with people with disabilities if they could. One quarter! A quarter of a pie is a big, freaking piece of pie, it's half of half. Now when asked they said that they were 'afraid of offending' us. Really? You avoid us for our benefit. You think that targeting and then isolating people with disabilities is something you do to protect us from you? Really? You're that bad a person that you are removing you from any possible social contact with one of 'those' people. Gosh, how people can mask their bigotry behind the concept of kindness. 

"Really, I'm doing them a favour!"

Let's see how are the rules of conversation different than they are with everyone else.

1) Don't talk about our bodies.

2) Don't talk to us in patronizing ways.

Hmmm. There are other rules but they are the fine tuning rules that you learn from each individual, disabled or not, as to what they find acceptable.

Those are the don'ts, how about the dos?

1) Acknowledge us in the same way as you acknowledge others.

2) Accept that we exist and ensure there is space for us in line and in ordinary social banter.

Gosh, not a long list either.

Don't tell me that your active avoidance is about this shit. I am not sure if the researchers believed you, thought I think they did, but I don't.

It's not our fault that you feel uncomfortable around people with disabilities. We didn't teach you to see us as less or as inhumanly different or as pariahs to be avoided. Don't know who did but it wasn't us. So don't blame your discomfort on us and don't pretend that visually and socially euthanizing us is for our benefit.

We exist.

We are here.

Grow a back bone.

Say, "Excuse me," if you bump into us.

Tell us how hot it is this summer when we're on an elevator with you.

Ask us if we liked the movie on the way out of seeing the same picture.

How hard is that?

It isn't.

Unless bigotry, not kindness, stops you.

Thursday, July 20, 2017

Chairless Tongue

"You don't sound disabled," the voice on the other end of the phone said, suspiciously, "are you sure you need these accommodations?"

I don't sound disabled.

That's what I was told.

And what exactly does "disabled" sound like? I don't know for certain but I know that whatever it sounds like, it doesn't sound like me.

Do people think when they speak about disability? Do they realize how offensive their words are? I wonder and I wonder more if it matters to them at all.

I was in a position of needing accommodation. I didn't blow up on the phone because I needed what I needed and I didn't want to piss off the person who could give it to me. She was the gate keeper to my successful accommodation so I simply let it go.

Sorry.

I don't fight every fight.

I capitulate when I am in the powerless position that need places me.

Do people who are employed in disability services begin to get a sense of the power they hold in their hands? Does it corrupt them? Does it make them mean? Do they begin to believe that the resources that they manage, which weren't created by them and weren't paid for by them, are theirs anyway? Do they think they can say whatever they want and be suspicious of every person requesting service?

I didn't "sound disabled" so I must have been scamming, I must have been trying to access what isn't rightfully mine. That's what we do us fake disabled people who don't even both to sound disabled.

Well hear this: Disabled doesn't have a sound you fartwit!


Tuesday, July 18, 2017

The Door

I was pushing down the hallway of the hotel in which we are staying. I had pushed through a doorway that separates one part of the hotel from another and was now on my way to the lobby. Perfectly normal start to my work day here in Boston. Now, please notice that I had pushed through the doorway, by myself, without assistance, as this needs to be clear in order for this story to make any sense at all.

A woman and her small boy were waiting at the elevator, which happens to be on the other side of the door I had gone through. She would have been in her mid to late 20's. She and her boy had been watching me come down the hallway while I prayed the elevator would come and take away the audience to my progression towards the lobby. I passed them, she said to me, "You poor thing" and I slowed to look at her, it's first thing in the morning and I had no idea what about me resulted in her comment. "They make the doors too narrow for wheelchairs," she said. I said, "I pushed through the door with no problem." She nodded, the door opened for the elevator, and got on.

I'm now starting my day with 'poor thing' ringing in my ears and it's going to take work to shush that up, push that aside and tamp down my annoyance. I'm starting my day.

Words have consequences.

By the time I got to work it had become a funny story. That conversion from feeling patronized and having reality distorted by prejudice ... I was through the door ... into an anecdote involves energy that could have been used differently.

Like enjoying the ride to work.

Monday, July 17, 2017

The Glue

I've been troubled over the last couple of days over an incident that happened at a movie theatre. Joe and I had just purchased tickets to go see 'The Big Sick' and I was rolling away. I hadn't noticed in the line behind me that there were two staff and two people with intellectual disabilities immediately behind me. We'd arrived early and went immediately to the ticket counter, they must have arrived shortly after.

The first thing said, with me still not knowing anything about them, I hadn't seen them, was "We are a little bit late for the Spiderman movie." The ticket guy must have asked how many tickets were wanted and the same voice said, "Two individuals and two staff." Now I know that theatre is part of a program where staff get in free when supporting someone with a disability.

I shuddered at the way the young man spoke even though I'm damn sure he was trained to speak that way and that he worked for an agency proud of the fact that they don't use 'labels.' However, the way that the two people with disabilities going to the theatre were spoken about seemed to be in some kind of 'code' whose purpose seemed to be the masking of shame with words used as a difference denier. In short, it sounded horrible.

Honesty in speech always sound more respectable, listen to, "Two people with disabilities and two support providers." Doesn't that sound better? Doesn't that sound open and honest and proud. Now some of you are thinking he should have said, "Four tickets." Well, the problem is, there are ticket pricing differences based on the need of people with disabilities who have support professionals along with them. This makes going to the movies more accessible by cost.

What would have been amazing, though, would have been if the people with disabilities had spoken, "Two tickets for us and these are our support workers." That kind of leadership in the personal realm is surely our goal.

"Two individuals and two staff." It still bothers me. It demonstrates clearly the lack of power and the presence of privilege that exists in the relationship between those who receive service and those who say they serve. I don't think that young man who spoke should be judged by what he said, I'm sure that he was following policy and that he thought he was not labelling the people he supported.

Sometimes labels are smacked on someones forehead stuck on by the glue of what we do, not what we say. This is one of those times.

Sunday, July 16, 2017

Anger

I see you see me.

You wash your hands, quickly, then pass me by. You act as if I'm not there. As if I won't know that it was you who made the mess. Who pissed all over the toilet seat in the accessible stall. As if I don't figure into your world, as if I am an inadequate consequence to your filthy behaviour.

But I wonder if you see me, seeing you.

And I know on entering what kind of person you are. Too lazy, or in your mind, too above, the action of lifting a toilet seat. No you leave your piss sprayed all over the seat, dripping wet, stinking of arrogance.

I saw you yesterday, in the mall, you walked by me as I pushed towards the one stall that would accommodate my chair and me. Your face became glued by my anger towards you to my memory of seeing that seat, the puddles of urine, and the damnable task of cleaning it up. I had no choice, no other stall to try. So I mopped up your piss.

Later I saw you, in the food court, with your girlfriend. I rolled by your table and stopped and stared at you. I didn't say a word. I saw her face confused, looking back and forth between you and me. I didn't move, just looked at you with contempt.

I wanted you to know that even as you value me so little, I value you less. I wanted you to know that your were beneath my contempt. Someone you see as being less than you, sees you as less than them.

I saw the change in your eyes as you wondered if I was right.

Let me tell you, I am.

Friday, July 14, 2017

Give the Kid a Moment

I was rolling towards the accessible toilet when a large group of children poured out of the gym. One of the kids was with a staff who, when seeing me indicated for me to pull over so they could pass. I clearly couldn't because I would have to pull into a steady stream of children, there was no room. I saw that the boy had an intellectual disability and that he was having trouble with the noise, the transition and the approach of the young staff who was really frustrated.

Frustration never helps.

Children with disabilities aren't being disabled to annoy you. They have a disability that requires you to surrender some of the emotions that, mixed together, create frustration. He was stuck. He didn't appear to need me to move anyway, that seemed to be the need of the staff ... get out of the way so we can get moving. He just looked at me, looked at the other kids and began to process. It will take him time to process. If I move he will have to start all over again.

I waited, patiently and quietly, a slight smile on my fact to communicate that there was no pressure. As the stream of kids began to dwindle, he stepped over, exaggeratedly, and then walked by me with the staff now in tow.

He needed time.

Disability sometimes requires extra time.

He didn't need  people constantly changing the problem.

I went about my business and he went about his.

Disability is our experience, it's one that needs your support, not your emotional reaction to using time, that you are paid for, to allow problem solving and decision making. Both of which the boy did.

Helping meant waiting. For her and me. And wow, that's hard for some people to do.

Thursday, July 13, 2017

Difference ... Loved Away?

I was clicked in to read a blog written by a mother who made the claim that in her house, her children would never have to come out of the closet because she and her husband were never going to stuff them in one. In her house love would be love and that's the end of it. She wrote this in response to those videos that show kids coming out to parents who, alternately, either love them 'anyway' or throw them out of the house. They can be dramatic, these videos, and show what kids still go through.

While I am glad that the woman who wrote the article is trying to set up her relationship with her children such that they never have to come out, I think she's making a mistake. No, not in teaching her children that love is love and ensuring they understand that both parents will love their children unconditionally, of course that's never a mistake. The mistake is thinking that 'coming out' and the 'need to tell' is something that can be avoided by the work and intervention of parents. Like 'coming out' is something under parental control, not something that is owned by and necessary for the child. This concerns me.

I read so much about how parents who love their kids simply love their kids and because of that they've loved the difference away. That their child's sexuality or their child's disability or their child's mental health status are things that can be made to not matter, not exist in a way that is experienced, by their child. I applaud parents, I say again, who wish to communicate acceptance and love for their children, no matter what.

But the irony in saying "My child who is (or who has) will feel my love and know that they are loved," is a statement that only has meaning and is only being said because of the difference. It makes little to no sense to say it about a typical kid. There is a universal expectation that parents will love their kids, the universality only becomes in question when a difference exists.

Beyond that, there is nothing a parent can do to make the 'coming out' process, the 'identification' process less difficult for their child. It is what it is and what it is is often painful. Coming out is not an experience that is limited to LGBTQ+ kids, it may have been named by that community, but it isn't owned by it. Disabled kids have to come out to themselves as having a disability, they have to go through the process towards self acceptance and identification alone. This process, the identification with difference, the acceptance of one's own difference and the resultant pride in being different, always happens in the context of a social world with messages about what is good, and what is beauty, and what is normal. Parents can soften the blow, but the blow will come.

My concern, though, when reading of parents who love their kids anyway, and who wish to love the difference away ... sometimes don't seem to notice that difference can't be loved away and 'loving anyway' is still a modification of 'love freely given.'

Parents stories and parental experiences are vitally important. We need to hear them, we need to understand their journeys but we need to understand that these journeys are different from the journeys that their children have to make. There are roads we all walk on alone, there are experiences that will always be uniquely ours. The voices and stories of the children, loved anyway, resistantly different, still need to be told.

The idea that our child will never have to come out to you makes no sense at all. Your child, of whatever age, still has to tell. A child's voice still has to say the words. No matter how hard you work to communicate acceptance, you will still have to actually accept.

It's a moment.

Parents of kids who are LGBTQ+ are learning about accepting and honouring and being proud of their child are important steps in their personal relationship with their children.

Parents of kids with other differences, like disability, are still having problems with the idea that 'my kid is like every other kid' trumping 'my kids experiences the world differently because of his disability and I need to understand that difference and allow my child the time and space to understand and identify their difference and work towards pride in who they actually are.' But we're moving there, we're getting the message out. We're coming out as a people. We're discovering our own voices.

And our voice and our experience is important too.

It's different from the voice of parents, it tells different stories, equally important stories, and has it has a right to exist and to expect to be heard.

Our experiences belong only to us.

We experience you.

You experience us.

And there may be great differences that come from that encounter. Experiences that can teach us about each other and teach us how to better love each other.

There's nothing to fear but the need for growth.

Tuesday, July 11, 2017

27

27 names

  1. Abdulmezhidov Adam Isaevich, born 27.5.1987
  2. Abumuslimov Apti Hasanovic, born 02.06.1989, Shali, Street School, 16.
  3. Abdulkerimov Side Ramzan Ramzanovich, born 25.03.1990, registered at the village of Kurchaloy, street Dohtukaeva 18.
  4. Alimhanov Islam Aliev, born 6.7.1998
  5. Abubakarov Adam Dzhabrailovich, born 05.05.1995
  6. Bergan Ismail Shadidovich born 19.08.1998
  7. Dasaev Adam Ilyasovich, DOB 16/06/1988, Shali.
  8. Dzhabayev Zelimhan Hizirovich, born 12.18.1993
  9. Ilyasov Adam Huseynovich, born 22.09.1997
  10. Lugano Rizwan Saeed-Hamzatovich, DOB 13/09/1987, Shali.
  11. Malikov Rizwan Agdanovich, born 01.06.1990
  12. Musk ICYE Turpalovich, DOB 19/07/1988, registered at the village of Tsotsi-Yurt, New Street, 10.
  13. Muskhanov Temirlan Ahmadovich, born 28.4.1986 Shali Chicherina Street, 2.
  14. Ozdiev Usman Vahaevich, DOB 12/24/1989, registered at the town of Shali, Grozny street, 39.
  15. Rashidov Doc Ibrahimovic, born 30.05.1995
  16. Siriev Magomed Musaevich, born 23.02.1993
  17. Soltahmanov Ismail Ezer-Aliyev, born 30.03.1994, registered at the village Mairtup street Nuradilova.
  18. Suleymanov Magomed Arbievich, DOB 01/03/1987, Shali village Caucasus, 8, Apartment 4.
  19. Tuchaev Ahmed Ramzanovich, born 23.02.1987, Shali, Street School, 30.
  20. Habu Khamzat Slaudinovich 14.02. Born 1993
  21. Khakimov Alvi Aslambekovich, 16.11. Born in 1992
  22. Hamidov Shamil Ahmedovich, born 14.11.1986
  23. Tsikmaev Sultanovich Ayoub, born 02.04.1984, the village Germenchuk, Youth Street.
  24. Shapiev Muslim Isaevich, born 28.11.1989, registered at the town of Shali, the street Kutuzov, 12.
  25. Eskarbiev Sayhan Vahamsoltovich, born 23.5.1992
  26. Yusupov Sahab Marshak, born 19.1.1990
  27. Yusupov Shamhan Shayhovich, DOB 17/06/1988, registered at the village of Kurchaloy, ul. Sovetskaya, 11.
The youngest: 18

The oldest: 33

Who are these people? They are the names, released in the newspaper Noyaya Gazeta, of young gay men who were arrested, detained, killed under the cover of darkness, and buried in hastily dug graves. 

Who killed these men? The Chechen government. 

We've just had Pride parades.

We've danced till dawn celebrating our victories.

While 18 year old boys were held captive, while governments declared war on love, while guns were being loaded.

What can I do? Well, do what I'm going to do. I'm going to write my local MP and I'm going to write the Minister of Foreign Affairs. While I'm at it, I'm going to jot a note to the Prime Minister.

I know it's not much.

But it isn't nothing.

And nothing is simply an unacceptable response.

Monday, July 10, 2017

The Gym

The gym that I'm thinking of joining, there's a phrase I never thought I'd say, has three pieces of accessible equipment. I went yesterday for a free trial day to see if the machines would work for me and if they'd be enough to keep me interested with a variety of exercises. One of the staff stayed near me to show me how to make the machines accessible, one by pulling the seat out and the other by unclipping it and sliding it aside, the other needed no modification.

I tried the first one which required me rolling up and onto it after the seat was taken away. I was able to get in and begin exercising. I did note the moment, my first time in a real gym, not a hotel gym, with equipment adapted for wheelchair users. I found myself, tiring out fairly quickly, but I set a goal for ten minutes on the machine and summoned up the energy to make it.

Then it was on to another machine. This one didn't have bells and whistles, no screen told me the calories burned or the distance gone, this one was just hard work. There again I set myself goals and met them. Admittedly the goals were low, but I'm just starting and I want to acclimatize myself to the machines and the routines.

The last machine had 5 different exercises you could do on it and I was instructed slowly and carefully on how to do each one. The instructor was very patient and answered my questions. She was interested as she listened to me talk about the mechanics of pushing a chair and which muscle groups were important to me, she answered what she could and stated that this was new for her too and what she didn't know now, she'd know next time.

After about an hour and ten minutes I left the gym and headed up for a run on the track. It's different pushing long distance on a track than in a mall, where I usually practice, because I don't have to constantly break for other people. There was a level of intensity that came with being on the track that I liked but wasn't prepared for. So I only did three laps but that was enough for the day.

I met with everyone downstairs as Joe and the kids were in the pool. Marissa, their mom, had agreed to be my gym buddy for the day and we compared notes on the gym. What struck me was that the staff were equally interested in both of our experiences and helped when it was needed or appropriate.

What also struck me was that my fear of being the odd one out amongst people who were all fit and toned was quite appropriate. They all were. My fear about them being superior or nasty to me because of my weight and difference was, in fact, unfounded. For the most part people were there to do what they do and it all seemed quite solitary. A few brief hellos when passing but little else.

So, I'm going to go a couple more times to determine if this is something I'm going to do or something I'm going to lose interest in. Then, maybe, I'll join. But it's nice that the decision is down to me and is only about my motivation, not about my reception or treatment at the gym.

On my way out of the gym I thanked them for their attitude of welcome and one woman said, "No problem, that's our job." I said, "That doesn't always make it happen though does  it?"

She nodded.

We'll see what happens next.

Sunday, July 09, 2017

Not The Last Time

We took the elevator up, rolled over to the door, and opened it. No one was there. I pushed through the door and stopped for a moment. Memories rolled over me. Unpleasant. Unnecessary. Unwanted. But they were there anyway. As I sat, getting ready to roll, I remember all the times I came last, the taunts that were flung at me, the teachers who rolled their eyes. It seemed, in my youth, that humiliation was considered to be a motivator, and, I thought, that idea is still widely practiced.

Then, I pushed.

I didn't go quickly at first I wanted to feel the floor. As a wheelchair user I pretty much always check out the rollability of the surface that I'm on. Entering this particular building I rolled over slightly uneven blocks in a latticework patter, it was difficult to manage and drew my focus to both mapping and pushing just to get to the door. This floor, however, was entirely rollable, my wheels were working at maximum capacity.

Then, I pushed again.

The girls were with me, Joe had sat down at a bench by the door, just watching. "Are you going to go all the way around?" they asked with hope in their voice, "can we go with you?" I told them they could but that once I started, I wouldn't be talking because I need my breath for the work or getting around the circle.

Then, I started in earnest.

I was only there touring the facility. I'd already been to the gym and had tried all the accessible machines, now I was up on the track. They had been friendly and welcoming, showing me how to make three different machines accessible to me as a chair user. I have no past with machines like these, with the cables and the weights and the sophisticated control panels. I did have a past with track. My stomach would sour before P.E. (Physical Education) because I wasn't good at it and because my lack of coordination and speed further demonstrated my lack of worth.

Then, I rounded the end. 

The chair was going as quickly as I could make it go. I was breathing regularly, focused on staying in my lane, listening to the girls laugh as they ran with me. And suddenly, the memories were gone. It was just the push down the long stretch. I looked up and saw Joe watching, smiling, waiting for me. I wanted to show off a little so I rounded the other end dangerously quickly. 

Then, I was done.

With a new memory made. A new start. I'm thinking of joining. Once I left the past in my dust, the present and future felt very, very, different.

Saturday, July 08, 2017

What About You????

I booked a hotel room today at a chain that I don't often stay at. I went on their website and could find rates and rooms but no information on accessibility. So, I called. I don't understand why accessibility is so foreign that it requires a call, why can computers handle it? Anyways, I called. The fellow who answered the phone was nice, really nice actually. I explained what I wanted and he went into the system to see if there was an accessible room available.

After a brief hold he came back to tell me that the accessible room, please not the singular 'the ... room', was occupied but there had been a note made that the person had requested a main floor room. He told me he'd call the guest that was scheduled to be in that room to find out if they needed the accessible room or if they only wanted a main floor room. I thanked him, he said he'd be back in a couple of minutes.

Maybe five minutes later he called me back. The person put in that room had not requested an accessible room, did not know that he'd been placed in one and was more than willing to move to a different room so an actual disabled person could have the room. Then we set about making the reservation.

The booking was done, he wanted me to wait until the email confirmation when through, which I did and then we were done. I said, "Thanks," and rung off. Seconds later I had this kind of realization that I'd not gushed gratitude towards him for doing his job and getting me the room I needed. I felt almost badly that I'd not emphasized my appreciation a little bit more. I felt like I somehow owed him.

I'm now really conflicted about just a plain 'Thanks' like any other customer booking any other room. He did have to go to extraordinary measures in order for me to have the room I needed. But, is that my issue? Should it be my issue? If they hadn't just randomly placed someone in the accessible room, I'd have just been able to book it.

ARGH!!

Sometimes I overthink things.

I do this a lot more as a disabled person that I ever did before, I'm not sure why.

Am I alone in this, do any of you run through routine interactions in your mind because of something to do with either disability or accessibility, I'm curious.

Friday, July 07, 2017

The Duck - Supplemental

Throughout our visit to the duck, there was a constant thrumming annoyance. To understand this understand that I'm a 64 year old man who, with a little help, is a good decision maker and has input into every decision that's made regarding everything. I'm lucky, I know. So here's the thing, throughout the whole trip people kept parenting me. Like I was not only a child but their responsibility as a reasonable adult in the presence of a child in need of instruction.

"Do you have sunblock on?" they would ask me, with Ruby and Sadie, two actual kids, standing right beside me.

"You need to have a hat on the sun is strong," which I agreed with but I forgot my hat because we left in a rush, not because I can't make a good decision about a hat.

"Careful now, you are too close to the edge," said to me while I was trying to get a picture of Joe and the girls close up to the duck, which I never managed to.

"Do you need me to find someone for you?" said when I was looking for Joe and the girls when briefly separated.

I know, I know, the impulse is to help.

But does that make it right?

If seeing a woman doing accounts at a desk and I said, "Do you want me to help you with that hard math?" I think it would be seen a sexist and inappropriate.

Would my defense that I'm just being nice be acceptable?

I don't think so.

So why is niceness a reason to discount the possibility of ableism or disphobia?

I got a lot of 'nice' on our trip to the duck. I'm not sure that I like it better than those who are openly hostile, it's easier to respond to hostility than it is to 'oppression by nice.'

Thursday, July 06, 2017

The Duck ... Part 3

Finally the duck is in full view, we are all in awe of it's size, it's really big. It had been a lot of work getting there and the kids were thrilled to see the duck close up. They jumped off the end of the concrete pathway and down to the sand and ran right over beside the water where the rubber duck was moored. Beside the duck was a photo-op place with a 8 or 9 foot tall duck and a long line up of people were standing waiting their turn.

I knew that this was a costly duck, there had been controversy in the paper about the money spent to bring the duck to Canada as part of the celebrations of our 150th birthday. But, here's the thing, no money was spent on making it possible for people who use wheelchairs to get anywhere near the duck itself. The beach was full of non-disabled people getting selfies or drawing duck pictures in the sand.

Me?

I sat at the end of the concrete pathway and watched. Joe and the girls did beach stuff and I laughed and encouraged. I knew that this was an experience for the girls, we went for them to have a good time, they didn't need to have me yapping on about the inaccessibility of the area and the frustration of working really hard to get there, navigating crowds in a chair, pushing over uneven pavement, or dealing with attitudes that were less than welcoming. They had been ahead of me and missed the conflict that occurred when I had been backed into.

I had to do a lot of inner talk to stop me from doing a lot of outer talk.

I didn't want this to become about me, my disability, accessibility or anything else. It was fun, damn it, fun.

Once done with the duck hunt we turned and headed back. We talked about the duck and we talked about the sun and we talked about the fun we'd had. And all of that was true. We had had fun. We'd laughed a lot. I needed to remember that.

I need to remember that even with the shit you have to deal with when rolling, not walking, there is a reason to be out in the world. There are things to share with other people. I had to shove aside the feelings that tiredness brought out in me. Feelings of frustration about just trying to be in a line up or just trying to buy drinks, the feelings of anger at being told that wheelchairs, and by extension wheelchair users, had no right to share public space, feelings of aloneness when I had to watch everyone go to where I was not able to go are all real feelings. But they aren't the only ones.

We'd made memories.

That's what we set out to do.

And that's what we did.

Good ones. And not so good ones. But my choice is determining which one trumps the other.

Wednesday, July 05, 2017

The Duck ... Part 2

The crowds grew thicker as we got closer to the duck. We'd begun to be able to see the hard yellow rounded surface on top of the rubber duck's head. I was pushing my chair carefully. I don't let anyone push me in crowds, I need to be able to navigate moment by moment, people who push don't usually have to kind of determined focus to get through a bunch of people without running into them. I was bumped into several times and was always glared at even though I was always the bumped never the bumper. I was wearing a bright shirt under a brighter sun, I nearly glowed and this gave punch to my apology, which I did every time I was run into, that's a Canadian thing not a disability thing, I said, "Gosh, I'm sorry, I'm so hard to see."

Then the mini crash happened. As I pushed forward a woman stepped backward and the back of her shoe went under my wheel. I didn't run over her, but it would've hurt, I acknowledge that. She turned on me. She was angry, she told me that I needed to be more careful. I stated that she ran into me, not the other way round. "Still," she said, "those things," pointing at my chair, "shouldn't be allowed ..." And she stopped herself.

Now, I'm angry.

"Finish your sentence you bigot, finish your damn sentence!"

"I didn't mean ..."

"Yes, you did, now finish you sentence, I want to hear you say that I have no right to be here, that I should be in a room locked away from people like you, real people. Finish your sentence!!"

She tried to apologize again and I refused again.

"You don't get to say that and then get forgiven," I said. "You just don't."

I was now falling behind everyone and began to push forward, carefully, not wanting another confrontation, another run into.

I have a right to these spaces. I don't want to cede the community and community events to people who wish me away. But by good heavens ...

... it's tempting.