Monday, August 29, 2016

Hush

I wrote a post a couple days ago about a young man who stood up for himself in a store. I wrote the post as it happened with myself as simply an observer to what when on, I was not an active participant in any way other than to respond when asked if I had witnessed what had happened. The comments which were posted both on this blog and on Facebook were quite positive but I did get a question which wasn't asked publicly. I have permission to do so here. The question:

"I don't understand how you could have let that clerk us the r word without speaking up yourself. Why didn't you do something?"

The reason I wanted to answer this question publicly is that I think that it's worth discussing. First let me give the short answer to that question. I didn't intervene because the remark was not made at me it was made at someone else and that someone else was taking action on his own. If I had intervened, my status in the hierarchy of how people see people, would have trumped his. This was his job, this was more meaningful because of the fact that he did it himself and because his voice was heard. Sometimes the most important thing to do is simply 'hush up' and let what happens happen. I can easily imagine situations where I would have inserted myself, but this wasn't one that needed me. He didn't need me. Well, he did, he needed me to let him be the primary actor in his own life.

One of the most challenging experiences I ever had educationally was taking courses in 'Feminist Approaches to Counselling and Therapy." It had me rethinking lots of things but one of the professors stated quite clearly a tenant which I have included in lecture after lecture and is a guiding principle of my own practise. "Never do work for your client that belongs to them."

Let me say that again: Never do work for your client that belongs to them.

We have to understand what our role is, what our work is, of course, but that then means learning what our role is not and what our work is not ... we need, in other words, boundaries. I believe that one of the biggest problems that people with intellectual disabilities have is that people keep leaping in and doing work that doesn't belong to them and thereby robbing people with disabilities of the experiences the need and letting the muscles of independence, non compliance and self advocacy (in its truest most personal sense) atrophy.

I didn't do anything because that what I was supposed to do. Sometimes inaction is the most important action you take.

He didn't need me.

He had himself.

And believe me, that was quite enough.

Sunday, August 28, 2016

EXclusion: Piss Off

Photo description: In this photo, lifted from an article in the Toronto Star, people are pictured using the bathrooms at the 'Ex' with the 'We Don't Care' symbol indicating that 'anyone can use them.'
There has been a lot of 'to do' about the 'inclusive' bathrooms at the CNE (Canada's National Exhibition) lovingly called the 'Ex.' For those who can't see the symbol clearly it's a combination of the male symbol and the female symbol that are typically seen on gender spedific bathrooms. A dress on one side and pants on the other.  Underneath are the words 'We Don't Care.' It's been widely hailed as a great step forward.

 I, for one, have never understood the bathroom debates that have gripped the nation to the south. Go to the bathroom of your gender - and by 'your gender' I mean, the gender you identify with. I have never thought that the expression 'who gives a shit' more appropriate to any situation in my life.

But I'm going to challenge all the people who have written articles and blogs about this new 'we don't care' symbol and the brave new world that it ushers in. I'm going to suggest that you still do fucking care because if you look closely at that picture, I can't use that toilet. See that step? That entirely unnecessary step? That robs the symbol of any right to the claim of 'inclusive.' It's still an inaccessible design complete with barriers. Not one article I read spent any time at all acknowleging that while we as a country and society need to be inclusive on the gender front we also need to back up and hear the voices of the 'I need to pee' movement from disabled people.

Listen 'y'all' I recent drove through the freaking woods and saw several accessible bathrooms along the way. You know the kind, the places made so drivers don't have to wipe their asses with leaves after they pooped over a log. You pull in park, and roll into the washroom.

So if they can make an accessible bathroom in the middle of the fucking country don't you think they could make them in the middle of Canada's largest city? Oh, I'm sure that there are disabled washrooms off to the side somewhere. Those washrooms that have never cared about gender, those washrooms where parents can take kids, those washrooms that have always been inclusive. Those washrooms? Why didn't they just make a bunch of those and slapp that symbol on it, maybe they could have given one side a crutch just to indicate that EVERYONE can go there.

I call bullshit on 'We Don't Care.'

You obviously do ... and don't think I think that you are oblivious to the smoke and mirrors thing you did to inclusivity - you know the trick where you make us invisible in the discussion.

Once again, I don't think there has ever been a situation wherein the expression 'you can all just piss off' with your self righteous sense of wonder at your generosity and big heartedness. EXclusion is still EXclusion.

Saturday, August 27, 2016

Full Stop

I saw someone with an intellectual disability stand up for himself today. He spoke right up to a clerk who ignored him in preference for someone else, "I was here first," he said. The clerk was taken aback and muttered, "fuckin' retard." The man I saw left for only a second and then came back with the manager. He was crying but when and when he spoke he fought to keep his voice calm. He explained what happened. The manager asked if anyone else had seen and heard what happened. I said that I had, two other people spoke up as well. The manager asked for all our patience as he pulled the clerk out and had someone come to replace him. The fellow with the intellectual disability, who was, in reality, the next to be served, was the next served. It was over.

The fellow standing next to me said, "He must have an amazing mother." It was easy for me to agree, he must have.

This incident happened well over a month ago. I never wrote about it. Every time I started, I felt like I wasn't far enough away from it to understand it yet. I don't always get the stories in my life, when they happen. I don't always realize a story has happened until long after it has been told. So sometimes I wait and sometimes understanding comes.

Why is it that we always tend to give over the success of people with intellectual disabilities to others?

If a woman stood up for herself, we'd think her a powerful woman. We wouldn't immediately think to attribute her strength to another.

If a gay person stood up for himself, we'd think him a powerful person. We wouldn't immediately think to attribute his strength to another.

We see powerful people all the time and though we may have a vague sense of the support system around them, or of their history of being supported by others, but what we see are powerful people.

Isn't it just possible that the amazing person in the story above is the fellow with the disability? Isn't it just possible that he taught himself how to be powerful, how to use his voice, how to advocate against injustice? Isn't it just possible that he drew on his own resources to give him the strength he needed to face down a bigot? Isn't it just possible that the achievement is his - even if he had a wonderful mother or good support staff or the best teachers in the world? Isn't it possible for a person with a disability to have an achievement that belongs only to them?

I heard a mother once, when watching her daughter give a speech at a self advocate conference, a speech that was well delivered, when her daughter, who was standing beside her, received a compliment, she responded before her daughter could speak, "I worked so hard to get her to where she is today."

Maybe mom did. Maybe mom worked really, really hard.

But is the accomplishment hers?

Does it belong to her?

I get a lot of encouragement and support from Joe regarding my nerves about public speaking. Even with that support, even with the fact that I need him to be in the room with me when I'm giving a new talk because I'm calmer with him there, I feel safer. Even with all that. I am still the one who gives the speech. No one ever attributes the success (or failure) to anyone else. What's mine is mine.

Perhaps it's time we started seeing people with intellectual disabilities as capable of owning their own success stories, owning their own growth and development, owning their own adulthood. Perhaps it's time we stop taking from them the things that make them powerful, independent people. Perhaps it's time we recognize that it's our need to feel valued for what we do that disallows people with disabilities the experience of feeling valued for what they've achieved.

He spoke powerfully, he responded with courage, he confronted bigotry and he did it with calm dignity. He is a powerful man. He acted in such a way that the store is now a safer place for all people with disabilities.

He did that.

With his courage.

With his determination.

With his power.

Full stop.

Friday, August 26, 2016

Mattering

The experience of disability, as we all know, is as much a social one as a physical one. This realization keeps slapping me in the face - especially when I've been dealing with my own person experience of myself as a disabled person. This happened in the Vancouver airport on our way back home. We'd checked in and when I asked if it was a long way to the gate the person checking me in told me that she didn't really know where the gates where. This happens to me a lot, when someone pleads ignorance so that there isn't follow up requests for assistance.

I figured, I'm stronger now, I can push farther, I'm going for the gate. We got through security and found that our gate was the furthest from where we were, but in for a dime in for a dollar, off I pushed. I made it to the gate, a very long way, under my own steam but my arms were screaming and I was really puffed out. Even so, I headed straight over to the desk to alert them to the fact that I was there, needed early boarding, that the chair was mine, all the stuff that I do.

The woman at the gate, very nicely, indicated that she hadn't got the computer up and to wait for a moment. I was glad of the moment so I could catch my breath and organize my thoughts. As soon as she looked up ready to assist a woman blasted over to where we were and began speaking to her about seats and her children and what she needed. The clerk said, "This gentleman was here first let me serve him and I'll get right to you."

The woman looked at me and said, I shit you not, "He doesn't matter, he can wait. We need help now. I am not seated with my children, I want to be seated with them. They are 10 and 12 and we need to be together."

The clerk said, "I will be right with you, but this gentleman was here first, I'll serve him and be right with you."

The woman began speaking again saying, "He ..."

I then burst in and said, "... don't say it. Really. Don't. Say. It."

She glanced at me, saw that I had been angered by her behaviour and by her statement that I didn't matter. In her silence, I said, "If you'd asked me if you could go ahead because of your concern, I would have said yes, but now I'm going ahead, not to spite you but to make a statement that I matter too."

I spoke to the clerk, clarified everything and then rolled over to Joe.

The pain that had been in my arms from the pushing now competed with the social pain of being 'someone that doesn't matter."

This wasn't the end of it. On the other end in Toronto, I was being helped to get to the luggage area by someone who'd met the plane to assist me. He had pushed for the elevator and when it came a fellow rushed ahead of us, almost smashing the foot pedals on my chair, and got in the elevator first. The guy pushing me, a guy really aware of disability issues, said, "I think what I've really learned in doing this job is that no one thinks that the time and the needs of people with disabilities really matter in comparison to their own. It's shocked me."

I said, "It no longer shocks me."

How is it that people so firmly understand their own importance that they don't recognize the importance of others?

I matter.

We matter.

Thursday, August 25, 2016

The Interview

We stopped for a cup of tea at a little shop in the mall. I found us a table while Joe went to get our tea. It's a place we like because they make the tea from loose leaf placed in a bag. It's good tea. I pulled my gloves off and then got my glasses out of my pocket. My glasses are kept in a long rectangular metal tube. I put them on the table where they promptly fell to the ground. The sound was disproportionately loud for what had happened. I don't understand the science behind sound but when the metal hit the tile, it sound near to a gunshot, everyone looked.

Now everyone was a group of elderly women sitting next to us having a passionate discussion about someone or something in Spanish. A young woman sitting on a stool against the wall. and two men sitting at the table behind mine. I was facing them and the three women were on my left and the young woman on my right. The glasses were on the floor by my right foot pedal. They lay there waiting for Joe to come back with the tea. I wasn't worried. Joe has picked up lots of things that I've dropped and he does it without even thinking about it anymore.

But. The glasses on the floor became a source of some tension. The women kept glancing at it, like they were wondering who would help me. The young woman simply turned her back to the scene and the two men kept on talking with the man facing me directly kept looking at the glasses on the floor and back at the man he was with. As it turns out he was interviewing the young man for a position in a store in the mall. The interview was happening over coffee.

At the point that the CRACK or the metal hitting the tile, the young man being interviewed was talking about being a people person, liking to help people out and being fully dedicated to customer service. I saw him notice the guy interviewing him glance at the glasses and he turned and did too, then went back to his testimonial about himself being someone who would be an asset to the store because he would make the customers feel valued. I was sitting there thinking, 'Come on man, get up and get the glasses, or at least offer ...' It was obvious that the interviewer was watching him and his response to the situation.

Finally one of the older women couldn't take it anymore and started to get up saying that she'd get the glasses for me. I assured her that I had someone to help me and they would be picked up when the tea arrived. She looked relieved, both to know that the glasses would be off the floor and that she would not have to bend down to get them. It looked like it would have nearly been as much of a challenge for her as for me.

Everyone relaxed.

The errant glasses would be retrieved.

The interview continued. Joe arrived, set the tea down and picked the glasses up. It was over.

About ten minutes later the interviewer wrapped up the interview. He said to the fellow that he had done a wonderful interview but he was disturbed that, when he talked about valuing people and wanting to help people out, he hadn't offered to pick up my glasses. "But he's not a customer," the fellow protested. The interviewer said, "That's absolutely the worst thing you could have said." They shook hands and parted. The young man, the interviewee, glared at me when he went by.

But me, I was OK, I had my glasses and my tea.

Sometimes I'm an object of pity, sometimes I'm and object of inspiration and then sometimes I'm just an object lesson. The common theme is 'object' isn't it ... and I kind of object to that.

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.