Wednesday, August 24, 2016

Advocacy In The Blood

My dad, well, he isn't much of a talker. It is one of the many ways in which we differ. He's the kind of 'Here's your mother' ... kind of dad when he answers the phone. Conversations are best about the weather and are even better when short. As I said, he's not much of a talker.

I went to visit my parents last weekend. My dad is 92 years old and my mother a few years younger than that. When we were there something happened that surprised me to my core. We were all sitting around. My brother and his wife were there, my mother also of course, and we were having teas and coffees and just catching up.

Then.

Dad turns to me and tells me a story.

My Dad is not a natural born story teller, well, that's what I would have said seconds before he launched into this story. In fact he told the story well. Paused, built interest and had a sucker punch ending. I'm sitting there thinking, 'The man telling me this story is my Dad. The, 'here's your mom' guy. Further, I realized a few seconds in that this is a story chosen for me. He recognized it as a story that I would be interested in. Here's my dad's story, written, unfortunately with my words. I will not capture his tone, his cadence nor the words he chose.

He was down picking up a guidebook of hotels and motels in B.C. While he was there picking it up one of the staff asked him if he found the guidebook helpful.

Gee, I can't just let him tell his story, I'm going to interject, my dad is, for the most part, a go with the flow kind of guy, a not make waves guy, a decent nice man. So his response added to my shock.

"I told them that, no the guidebooks weren't that helpful at all," he said. "They asked me why and I said that it was one of the few guidebooks where none of the hotels had any indicators of whether or not they were accessible. I told them that my wife used a wheelchair and we needed an easy way to choose where to stay. The clerk said that she was sure I was wrong so I showed her. Not one. Not one hotel had any information about accessibility. She was shocked"

Not only was she shocked she took down my Dad's information! Here's Dad again:

"Well, wouldn't you know it, I got a letter from the states. The people who publish the guidebook and they apologized for having missed that detail in their publication and would look into ensuring that it would be included in upcoming publications."

That's my dad!!

The guy I thought I didn't have much in common with.

I shouted, "That's where I got it!" and threw my arms in the air. That Hingsburger blood has an advocacy gene in it that I didn't know about.

My dad knows that I battle for disability rights, he knew that I'd like the story. And I did.

As we left, every time we do so we wonder if we will all ever be together again, my dad put his hand on my back, he doesn't do that either, and said, "You take really good care of yourself won't you?" His voice was soft.

It sounded like he said goodbye.

I hope not.

I'm guessing there are more stories.

Tuesday, August 23, 2016

A Ferry Story

I'm not writing this to 'get back at' anyone. I just need to tell the story in context to get your opinion on how a situation was handled.

Joe and I were coming back on Sunday from Vancouver Island and I'd made a reservation on a late afternoon boat. As we drove down island we noted that the boat was sold out and were pleased that we had made the reservation. When we showed up we discovered, to our horror, that we'd mistakenly reserved for Saturday not Sunday and were facing over a six hour wait, as the next boat was also sold out.

I was a bit panicked because I knew that by then my legs would be quite swollen and painful. We plan our travel, if at all possible to ensure that we aren't overlong on the road. 10 to 12 hours is kind of a max for me. This wait would put us around 16 hours. I arranged to speak to someone at the ferry and when I did, I explained the situation. We'd made a mistake. I took responsibility for that. I explained why I was concerned with the wait.

Now, let me be clear. I was expecting that there was nothing that could be done. Even so, there's no harm in asking.

The fellow we spoke to listened. He said that as we had made the error there was nothing he could do to help. OK, so far, so good, we expected that. Then, he did something I thought was odd.

He went on to say that he had the power to put us on the boat but just wasn't going to. He gave an example of a fellow whose father was in the hospital in Vancouver and needed to get over. "I put him right on," he said. Then, he said to us, "Well, there was no harm in you asking." Which is what we thought too.

Then we watched him walk away.

Again, we were anticipating a 'no' and would have been okay with the 'no' but ... the 'I could if I wanted to but I don't want to' or the 'the other guy deserved my compassion but you don't' thing really rankled me. It was like he wanted it to be clear that he had to power to help and the power to withhold help. Like he wanted us to know, for certain, that he was saying 'no' ... that it wasn't just the circumstance that we found ourselves in, that it was HIS DECISION that we would not be helped.

That annoyed both of us.

Say 'no' and be done with it. But don't tell me that your 'no' is completely at your discretion and that you have said yes to more deserving others - and that you get to decide who deserving is.

Yep. It was my mistake in making the booking. I was unfamiliar with the website and should have been more careful particularly because I need to be responsible for my needs, I shouldn't need to rely on the compassion or kindness of strangers. I don't like playing the 'disability card' and really hated even asking.

In the end we got on the next boat so the wait was only 2.5 hours and we got in before I needed pain killers. Too, we met a wonderful woman at the ferry who tried to help us all she could and of course the staff on the boat, even though we got stuffed on at the tail end of the line up managed to park us so we could get both me and my chair out of the car. Overall I think the BC Ferries is pretty disability friendly.

But this guy and his 'I can but won't' attitude annoyed me.

Would that have bothered you too??

Please be frank, but respectful, in your comments.

Monday, August 22, 2016

Bigot Bowling

A long way from home, I am pushing myself in a mall. Part of it is to do some shopping but I am primarily here for the exercise of pushing myself long distances. I am now strong enough to push myself up inclines and curbs but lack the ability to do long distances.  So, that's what I was doing. Joe was back at the car getting something. I was just pushing by a fellow sitting on a bench. He looked familiar, really familiar. Older, much older, but familiar. I suddenly put it together and spoke to him. I was right, he was someone I'd worked with decades ago back in Ontario. I knew he'd moved west but I'd never expected to see him again.

We chatted only for a moment when he said, "People call me names. Mostly they call me fat. But they call me other names too." It was just a statement. Not a question. A statement. It was like he just needed to say, "This is what life is for me here." I didn't know what to say, or how to answer, then I realized, that I don't work with him any more. I'd thrown myself back into a role that I didn't have. I pushed myself to simply think of this as two people who've run into each other after many years. Then it was easy to know what to say, "That's wrong." A simple statement.

He nodded. "I know it's wrong. But they do it anyways."

I agreed and said, "They know it's wrong too, but they don't care. Mean people are like that."

"What should I do?" he asked. Then I knew that maybe I had shrugged off our previous relationship but he hadn't. His tone in asking the question was exactly what it had been all those years ago when we worked together. "Should I hit them," he asked. I knew he knew the answer to that question.

"When people call me names, which happens all the time," I said, "I feel like hitting them. I do. But I never do. There are other things I do."

He asked me how I handled the teasing, the stares.

We talked for about 5 minutes more. Swapping ideas and even laughing a few times as we talked about living different in a world that doesn't honour or welcome our kind of difference.

I left him there after introducing him to Joe and wished him well. I rolled away and then looked back. He looked so lonely and so vulnerable. He looked defeated by the life he lived. By the constant battery he took from those who know better but use him for target practice any ways. He told me that people never hit him, they just call him names, all the time, every day. I had shared my strategies but I'm not sure he cared about them. I think he wanted a moment where he wasn't alone. "I feel really alone when people call me those names," he had said. His ask of me was not 'therapy' or 'counselling' but for a moment of 'unaloneness.' I could give that to him because of shared experience.

When we came back down the mall from the other end he was gone.

The bench was empty.

I was sorry I didn't have a chance to chat for another couple of moments. I looked around at the people in the mall. I wondered which of these would be someone who would just randomly hurt someone like him. Then I heard someone say loudly to a friend, "Look at that fat fucker!" I turned to see a young man standing with his friend. I knew then, who amongst these would do that. I turned my chair and began pushing towards him. I must have been a frightening sight, because he looked afraid.

"Let's get out of here," he said to his friend who looked equally scared of a big boiling mass of fat cripple aiming straight at them like a bowling ball about to knock them over. I wasn't going to, of course, I had something to say. But they took off running.

So I never got to say it.

But, then, maybe I did.

Sunday, August 21, 2016

Isn't

I have not been shy, in this blog or on my Facebook page, as identifying as a fat man. For the most part I feel fairly safe doing so. The people who read here, and the people who I am 'Friends' with on Facebook are by and large people who understand issues regarding difference and prejudice. Even so, there are moments when I realize that even these spaces are not particularly safe for me.

Everyone has seen, I imagine, the news reports of the 5 statues of a nude Donald Trump that showed up in very public places in 5 American cities. The statues aren't at all accurate, I know this not because Mr. Trump have been intimate, but because I've seen him clothed and know that he does not have the body that has been created for the statue. He is not a particularly fat man.

But, we live in days where racism and sexism and homophobia and ableism and disphobia are no where near as damning to a person's reputation or character than simply calling them, in any form possible, fat. Further the statues show Mr. Trump having a very small penis, it being embedded behind folds of fat.

When you see pictures of the statues you also see pictures of people around the statues. People desperate to get a picture of them. Pictures of women screwing up their faces in disgust as they touch the statues penis. People laughing at the image, not of Trump, because other than the hair and face, nothing about this is Trump, but at fat men with fat bodies, at men with penises which nestle rather than hang because of the body type they are attached to.

Worse are the comments.

I can't ever unsee that again.

This is so disgusting I can't even look.

I'm going to stop there, because they get worse, much worse and they betray what I know to be true, being fat is the ultimate in ugliness, in failure, in criticism.

Mr. Trump and his rhetoric appalls me. But it's what he says, it's how he represents himself that causes me to react to him the way I do. It has nothing to do with his hair, his body or the size of his penis.

Nothing.

Yet I see people, people who I thought were pretty cool people, cool with difference, cool with me as a person, posting pictures of these statues with horrible fat phobic remarks. Remarks made acceptable because they think they are commenting on Trump. Of course they're not. They are commenting on men who look like me, fat men.

And it startles me.

You say, in all your other posts that you honour difference.

You say, in all your other posts that people should love themselves as they are.

You say, in all your other posts that body shaming is wrong.

And now I know.

You lied.

And I don't know what to do about it. Except to realize that the space I thought was safe.

Isn't.

Thursday, August 18, 2016

Bright Red Walker

She was having a bit of a difficult time. Her walker, a bright red one, was brand new, and she kept bumping into things as she tried to get around. She took it in all good spirits and, in fact, was singing quietly along to the 'I'm Just a Teenager in Love' era of music playing in the breakfast hall. I was sitting just inside the door waiting for room to get in.
\
Two women were waiting for toast and watching the older woman, with her new walker, as she got around. They noticed her happy demeanour and her her quietly singing along with the music as she gathered her breakfast. In an almost angry voice, one said, "I sure don't know what she's got to be happy about?" Her friend responded, in full out anger, "And she sure has nothing to sing about."

They were angry.

Their response to seeing a woman, happily going about her day, happily getting used to a walker, was anger. Think about it. Anger.

Were they angry because she was upsetting their stereotype that she should be all depressed and ready to call for the euthanasia bus because she needed to use a mobility devise?

Were they angry because she dared to be happy, to sing, to have chosen a bright red walker, when disability needs to be approached with somber tones, dark furrowed brows and DNRs?

Think about it again. They were angry.

What the hell in that picture is there to be angry about. She never bumped them with her walker and her inexperience. She took up a little more space because of that inexperience but there was space to be had. I was waiting, not because of her, but because others don't know how to handle space when someone in it uses a mobility devise.

Finally, I got in, I rolled by her, stopped and said, "Love that colour of red." She smiled broadly, it was a smile that looked like it had been given a million times in a million different circumstances throughout her life. "It's jaunty, isn't it?" she said. I laughed and said, "Very."

She's lived a happy life. It came so easily to her to simply continue to be happy, even on wheels.

The others seeing me and her chatting and laughing, it must have been too much because they simply grabbed their toast and fled to their table.

I'd rather, any day of the week, have a little song, and a big smile be part of my breakfast rather than sit down into anger to begin my day.

They were angry!!

Angry.

Wednesday, August 17, 2016

A Fundamental Right

So we're staying in a hotel room that has an odd feature. The bathroom light is on a motion sensor, it just comes on as soon as you enter through the door. There is no way to turn the sensor off. We don't know if this is an 'accessibility feature' of the room but we do know it's a damned annoying one. Both of us wake up too easily when we are standing in a white room flooded with light. And as we are over 60 we both make a few trips a night to the white room. Going from the dark of sleep and the dark of the room into the centre of the sun is startling to the point of full wakefulness. Then, of course, there's the job of going back to sleep.

After two nights of this, we went to the front desk of the hotel. We waited two nights because we forgot about it after the first one. I was explaining to the clerk the problem and said that it was really affecting my sleep, which it was. Joe added in that he too was disturbed by the blast of watts in the middle of the night. The clerk first asked me if I was sure that I didn't need the light to go to the bathroom at night. I didn't say, but thought, I'm 63, I'm here asking for the light sensor to be stopped, I'm pretty sure. I just nodded.

She said she would see what she could do for us. I said, banging my fist on the table, "You just tell them that the ADA says that I have the right to pee in the dark!!" We all laughed. Joe and I left to go back to work and when we were back in our room, the light sensor had been fixed and we were set to have a darker night.

I'm Canadian so I'm not familiar with the ins and outs of the ADA but, if it doesn't say we have the right to pee in the dark, it needs amending.

Do I have an AMEN!

Tuesday, August 16, 2016

Meeting Big Brother's Sister

I was waiting just at the door to the shop for Joe. He was paying at the till, which though it was marked with the Wheelchair Accessible symbol, was no different than any of the other tills and therefore was to narrow for me to pass through. I made comment, of course, and then went to the front door. The sun was streaming through the windows and even with the air conditioning, I felt it's warmth. I didn't snooze but I was in that comfortable warm, comfy, and pensive state that you get when you have time on your hands but nothing to do.

A hand touched my shoulder and I startled out of my near, but not quite, little nap. I looked up into a friendly face. A woman, smiling, said, "I just wanted to compliment you." I tense up. Disabled people worldwide know the sensation of being inspirational, worthy of compliment, for the most minor of accomplishment. "Thank you, you are right, I do back my chair up really, really well." I waited to hear her finish.

"I noticed," she said, "that you pushed yourself around the whole store without any help at all. At your size, I imagine that's quite a task, and it's good to see you trying so hard, keep at it, you'll achieve your goals if you do." I was stunned. I'm not sure what goal she was referring to, though I can guess, but what bothered me was the sudden realization, again because I've had it many times before, about the sheer visibility of my life.

I go about as if I'm just going about, but because of my double difference, I'm always on display, always becoming part of someone else's story about their day. "Do you know what I saw at the store today ..."

I'm an object lesson. What that lesson is, I don't know, good or bad, inspirational or not, but a lesson I shall be. I'm always a 'what I saw' never a 'who |I saw,' I go about my business just doing things, like we all do, but those things get transmuted from ordinary to extraordinary because of my touch.

"You were watching me?" I asked, a bit coldly.

"No, no, not intentional, I just noticed, and I wanted you to know how pleased I was to see you working so hard," she answered, smiling.

"So, you were watching me?" I said again, pushing my wheelchair away from her.

She got flustered.

"Not watching watching,"

"I'm sorry, you are making me very uncomfortable, could you please leave me alone," I said, quietly but firmly.

She left.

Yes, I wanted to make her uncomfortable.

Because watching someone go about their business is weird.

Isn't it?