Saturday, December 09, 2017

Ergometer

I was working out using one of the cable machines, it was set at a fairly significant weight, and my eyes were closed as I was exercising. All I was doing was counting the repetitions and, for me, that's easier to do with my eyes closed. I was at the number 28 when I heard a voice commenting about weight. I opened my eyes to see an elderly man, with a kind face, in workout kit.

Now I'm so used to people making comments about my weight, total strangers, that I put him in that category, what else could he have said. As the words started out of my mouth, my brain computed what he had said and it was 'You are lifting a lot of weight there." He was complimenting me on what I was doing and how hard I was working. But the 'retort' was on it's way out. I managed to stop what I was going to say but I was not able to turn the words into a statement that held any meaning. He looked confused, not about my words, which would have been understandable but by my tone, which I hadn't been able to switch, and it had been hostile.

So, I just behaved like a jerk whose words make no sense at all.

I continued on working out and waiting for an opportunity to say something to him, anything, to prove that I'm less of a jerk than he might think and that I can string a sentence together. None came.

This is no excuse but no one had ever spoken the word 'weight' to me in a complimentary manner. I had to realize that I was working with weights that are set at levels much higher than they were when I started and heavier that I though was possible for me. I was going to have to be careful.

Finally I saw the old guy using the machine I use every time I go, the arm ergometer, when he finished and headed back my way I said "That's a great machine, isn't it, great upper body workout."

"Yes, yes, it is," he said and smiled.

Nice old guy. Great that he's there. He's got the gift of encouragement.

I'm working to have better control over my verbal reflexes and to be more willing and more ready to think better of others as a starting point. 

Friday, December 08, 2017

Elevator

My office is moving in a few weeks and yesterday I was downstairs looking at the space the team and I will be moving into. We had a great discussion of set up and design and we talked about colour and furniture and all felt growing excitement about the move.

I mentioned that my only concern was the elevator and explained that how there wasn't enough turn radius when getting on at that floor because it's a smallish elevator. I had tried once before and simply couldn't do it. I'd have to take off my footrests to manage.

I offered to demonstrate, so everyone came over and I pushed the elevator button and then when the door opened, got on easily. I was mortified. After my big speech about how it was going to be something I'd have to think a way through, I got on simply and easily.

Over the next several minutes I thought about it. I had gone to that floor of the building only once or twice early on as a wheelchair user. It was really hard, impossible actually to get the chair onto the elevator without taking off the feet. I know that was true, I remember it clearly. The difference was that I am now a fully experienced wheelchair user and I know how to maximize space, even create space for the chair. It's something that happens naturally in my head.

I couldn't do it then.

I can do it now.

Now I have to wonder how many early tries and early fails have led me to decide that something is impossible not realizing that my skills would grow and being a wheelchair user is a skill based way to exist in the world.

I'm going to have to be careful about things I've dismissed as not possible. Oh, joy, more things to think about, that's work, but oh joy, maybe I've new experiences waiting behind doors I thought to narrow.

Thursday, December 07, 2017

I'll Take Etiquitte for $2000, Alex!

Joe and I have watched Jeopardy, the TV game show, since we first got together. We both enjoy it. Joe is much better at the game than I am, he has a broader range of knowledge being one of those people who like history and geography, so he slays me every time. Sometimes our knowledge surprises us like when they recently had a category called "Disney Princesses" we hotly anticipated those questions. After Ruby drilled this information into our heads and then Sadie reinforced it, we are pretty Princess fluent. It was true to, Joe and I were hollering out "Jasmine!" "Aurora!" as we aced the category.

But, sometimes Jeopardy not only involves questions and their answers, sometimes in little ways it gives a glimpse into what kind of facts are important, what kinds of things are current, and what kind of things that people need to know. This happened a couple of days ago.

The category was 'Etiquette," we were doing okay with the different questions, and then the $2000 clue was revealed. I was gobsmacked and called Joe from the kitchen where he was making us tea. He too was taken aback.

Why?

It was a question about disability etiquette.

This is an approximation of the clue, "a wheelchair is the extension of someone's body and therefore it is part of someone's personal ..."

Now the answer is obviously, "space."

This was the $2000 clue which meant that the writers of the show thought that this would be the most difficult question of the category. One of the players got the answer and play moved on.

Jeopardy!

A disability etiquette question on Jeopardy!

We must be making headway.

Here's to Alex and the producers and writers of the show for a few seconds of recognition that we have bodies and we have space and we have a right to have those respected. I'm guessing that they did more in that one question than they will ever know.

Wednesday, December 06, 2017

The Door

He was at a door that had swung shut behind him effectively locking him out. The door had a push bar on the inside which would have allowed anyone to help. The trouble is the anyone was me. I couldn't get to him. The stockroom was full of boxes and barriers which made it completely impossible for me to find a pathway to him. I was sitting in my wheelchair as he was gesturing, with increasing anger, for me to come and open the door.

I pointed to my chair and then to the blocked passageway. He didn't care he wanted me to come and let him it. It was cold. It was damp. There was no one around but I knew that some other employees were in the area somewhere. I had started loudly calling for someone to come and help. No one came. The area must have been fairly well soundproofed.

Now he's outright angry, furious that I wasn't coming to let him in. I felt horrible. I began to look if I could move or shift things to make a passageway. I tried but it was impossible, and even slightly dangerous, I didn't want stuff falling all over me.

Finally I heard the voice in the distance of the person that had brought me here to wait for them to try to find something for me. I shouted as loud as I could for "HELP!" He came running to see what was wrong and immediately saw his angry co-worked stuck outside behind a locked door. He immediately went to rescue him.

The door opened but the anger did not subside. He stormed passed me as I tried apologize and explain, because somehow I thought it needed explanation, that it wasn't clear, that I couldn't get to him because the pathway was blocked. He didn't even look at me, he just made a gesture brushing all what I was saying away.

I was left really upset.

I wanted to help him but couldn't. That is one of the most difficult feelings I have as a disabled person. Sometimes I'm in situations where someone needs something that I can't give. In an emergency I'm the one who needs not the one who helps. That's an ugly feeling. I would have loved to help. But boxes and barriers kept me for being able to. My ability to help, the thing that I really try to do, was compromised.

I don't know if he thought I could magically jump out of my chair and come and help. I don't know if he thought I was lazy. I don't know.

But I am disabled.

And I couldn't help.

I should be able to let this go but I'm having real trouble with it. What he needed was simple. So simple a child could do it. But I was not able to do even the smallest thing.

I hate this feeling.

Deep down I have to ensure that this feeling doesn't translate into anything more that it is. And that will be my work for the next several weeks.

Monday, December 04, 2017

Coming Out ... Going Out: An International Day of Disabled Persons Post

It was International Day of Disabled Persons yesterday and I wanted to do something to celebrate. I decided that what I would do that day, to make a difference, was simply: go out. For people with disabilities to come out, we simply need to go out. Existing in a public space is enough to challenge stereotypes and attack prejudice. To be different loudly, one need not say a single word.

We chose a mall that was a bit of a drive for us.I wanted to lap the mall so that I could both exercise my body while exercising the minds of those closed to the idea of disabled people being out and belonging in public space.

All the disabled parking spaces were taken so Joe dropped me off at the front of the mall, right beside a fairly steep and fairly long ramp. I got out, had Joe pull the car away so I could back up to give me space to build some momentum and then up the ramp I went. One fellow offered help but respectfully responded to my 'No, I'm good.'

I went through the large sliding doors with two young teens. One of them turned to me and said, "You should really be wearing a jacket." WHAT?? Disability is still seen as a diminisher by some. I said, "I'm old enough to be your grandfather, would you speak to him that way? And by the way, I'm a stranger, don't talk to strangers." So I begin my International Day of Disabled Persons by being chastised by a child for not wearing a sweater.

Then, the lap began. I've been pushing long distances for a while now and can really get up some speed. I was enjoying the physical movement. I was enjoying whipping around slow walking people and surprising them. I left them in my dust. It's International Day of Disabled Persons and I'M HERE, I'M OUT AND I BELONG. You may think this silly, but I don't.

Disabled people are in a continuous battle to claim public space and to claim belonging. Because we are diminished we are also dismissed as full human beings, with our own agency and with our own lives to live. I believe that every time one of us is anywhere 'they' are, we are agents of change.

Non-disabled people will never know what it's like to go out into the public realm and know, with certainty, that you will be constantly reminded of outsider status. Staring. Pointing. Giggling and then, of course, there are the weird kind of social interactions that come from people trying their hardest, and with great effort, to be kind. Like a young teen advising an adult man in a wheelchair about his clothing.

So I spent just over an hour lapping a large mall and purposely, intentionally, being OUT while I was out.

That's what I did on the International Day of Disabled Persons and that's what I do pretty much every day. Because I have to. This is my community, and I will claim it and claim it and claim it again, and I'll keep doing so until it's ours.

It's what we do, as disabled people, to make change.

There is an everydayness to the struggle for equality for people with disabilities and differences.

I saw lots of other people with disabilities in the mall we went to, simply going about their business, I saw people watching them in the same way they watch me. We are our own Public Service Announcement ... and people pay attention.

Which is why...

We will win.

Sunday, December 03, 2017

Manda and the Day

Manda was a woman with Down Syndrome who I met years and years ago. If you read her file it would have said something like, "She was a lovely, kind and patient woman who enjoyed being included in conversations, being 'one of the crowd' with family and friends and being listened to when she spoke in her low growl of a voice." That being included in conversation, hanging with her friends and being listened to was seen as something to describe her, not every single person alive, it a big tell about how people with intellectual disabilities were seen back then.

She and I along with two others, were scheduled to walk up to a corner store, buy some snacks for the program and then walked back. This counted as both an outing and teaching about money. What it was was a walk. Manda was happy on the walk because one of her best friends, a much older woman with Down Syndrome was part of the group. She liked and admired her. They walked together chatting behind me. I had violated the 'you must walk behind them so they are in sight at all times' rule. I'd done this walk before, I could hear them behind me, I felt that every now and then a bit of privacy might be nice.

We got to the store and when we came in there were two other customers in the store, a boy and a girl, both in their late teens. They began snickering right away. They pointed at them and whispered jokes that they both found very funny. They were standing at the head of an aisle blocking the passageway. When Manda's friend tried to get by them, the boy said, "Say please you little retard," she started to cry. Manda walked quickly over to her friend to comfort her. She stopped for just a second as she walked by the boy who had said the foul word and who had spoken both with superiority and disdain she smiled at him and said something he couldn't hear. Her voice had always been a quiet one.

He leaned down to her to hear what she was saying, laughing all the while. When he was near enough she wound up and slapped him hard across his face. He screamed in shock, HEY! But he screamed to her back she was with her friend and she was comforting her.

His girlfriend turned to me and said, "Aren't you going to do something?" I said that I wasn't going to do anything. Not at all. "Isn't he going to do something?" I asked, when they looked blank I said, "Apologize."

I was told to Fuck off in a number of different ways.

Back in those days I knew little about the disability movement, about people fighting for freedom and access. I had never heard of an International Day of Disabled Persons. I was young. Very young.

Even all these years later, I remember this moment. The moment when a slap awoke in me the first understanding of rebellion against prejudice. It revealed to me that people with intellectual disabilities feel the actions of others and that words and attitudes can be as destructive as any other form of violence.

While this day, International Day of Disabled Person is tagged on the calendar today, it isn't limited to or by a time and date. It happens every time an action is taken that effects even a small part of the world around us. We to see that every day, every opportunity we have to make change, to fight prejudice, to actualize anyway we are part of an international movement. We are not alone.

The theme of this year's day includes the words 'leave no one behind.'

We watch out for each other, across the disability spectrum, ensuring that we all, like Manda, stand up for our friends, stand up to bullies, and strike a blow for respect and dignity.

On the way back to the program Manda asked me, "Are you going to tell?"

"Not today, and to no one here," I said.

She patted my arm.

In that moment, I was no longer staff, I was co-conspirator, and God that felt good. 

Saturday, December 02, 2017

Help Unrequested

There is someone that I dread running into.

Just dread it.

It's not that she's a horrible person, in fact, most people just love her. They speak of her kindness and her thoughtfulness and her care and concern for other people. They suggest that there is a selflessness about her that they really admire.

I suppose that's all true.

To them.

Of course I see all those things about her. Before I became disabled I admired them, thought I should be more like her. Now, I still think that in many ways I should be.

But.

And it's a big but.

It feels very different being on the other side of her warmth and caring. Whenever I come into a room, and she is there. She practically bowls Joe over so that she can be a help to me. She inflicts care on me. I feel the intrusive nature, the needy nature of her actions. I'll turn my head to talk to someone and when I turn back there will be a cup of tea, a bowl of soup, a piece of cake, shoved into my face. We almost always meet at parties and social gatherings and when she and her help are there, my stomach falls.

People often tell me that I'm very negative about people's help and kindness. I don't think I am. I do need help. I do need kindness. But I only need them at my own discretion, not when people decide that I have no personal agency. Websters defines this as " the capacity, condition, or state of acting or of exerting power." To decide when I need help, what I need help for, how that help with be delivered and how I am supposed to respond to help unrequested, makes me someone different, someone moulded into an object, a thing, like a teddy bear being fed, or not by the whims of a child not on the wishes of the bear.

Help asked for, help given in response of a need I identify, I am so grateful for, like the woman who responded when I needed something that was just out of my reach.

Like the staff at the gym who help me 5 or 6 times a visit when I ask for help with equipment, with turning machines accessible, with adjusting the grips on the cable machines.

I need help from strangers.

I get it.

But do you. Help unrequested is something very different. I'm the acted upon. 

"She means well."

I'm told.

But does she?

I've talked to her about it. Told her that if I ever need her help and she's there I'll ask her. She looks at me curiously.

Like a teddy bear that just spoke.


Friday, December 01, 2017

Out Loud!

Today is a big day for me.

Many of you will know that I am the founder and co-editor of The International Journal For Direct Support Professionals, published in English, French and Spanish, which reaches a broad international audience. Out today is an article written by two miraculous people, Dr. Yona Lunsky and Dr. Anna Durbin, on the subject of supporting people with intellectual disabilities around issues related to HIV and AIDS.  This matters to me. Really matters.

Several years ago, at home, at night, I received and phone call from a social worker who worked far to the north of Toronto. He was desperate. He was supporting three gay men with intellectual disabilities. All of them had been having unprotected sex in parks and public restrooms in the small town in which they lived. When he began supporting them they all told the same story. They couldn't have condoms because if they were caught with condoms, and caught they would be because of the intrusive nature of supports, then they would be in trouble for being sexual and they might be discovered for being gay as well. For them, safe sex, was without condoms as evidence and done in secretive places like behind a public restroom door. They lived in fear. Fear of the agency for finding out they were sexual and that they were gay. Fear that they may have been exposed to HIV.

I was asked if I could, as a person, not as a professional, they had no trust in professionals with affiliations, support him is supporting them to get tested. I agreed to help. After contact was made with an anonymous testing site an appointment was set. The men were readied for the reality of the test and the possibilities of the results of that test. They were good men, they were responsible men, the wanted to know and they wanted to figure out how to change their situation so that they could reduce their own risk.

I met them.

We all went to the appointments and then ... we were done.

On the way back to the car, we suggested that they might want to stop into a gay bar. None of them had been in a place that welcomed  people who, like them, were LGBT. We went in and took a table and order beers for everyone but the driver. We sat and talked. As we did, the men talked about the test and their fears and what it was like to speak without whispering. They were awestruck at the place and at the easy way that people simply were who they were. The conversation was overheard by others at other tables. But there wasn't fear of the fact that others heard because the realization was that others knew exactly what they were feeling.

A couple minutes into their chat about their fears a gay man walked up to the table and dropped 5 condoms, one for each of us, on the table. He nodded, smiled and left. This started a parade of men coming by, dropping condoms, or wishing them well as they waited for their results.

Inclusion.

Welcome.

Belonging.

These three things brought their anxiety down. They knew the wait would be hard but they knew that they could do it, and whatever the result they would support each other and that their was a community that would support them.

Now these years later, we are publishing this newsletter today on World AIDS Day, we are bringing the discussion into the dark corners of the sector serving people with disabilities ... corners that still repress sexuality, repress education and force men and women into a lifestyle of shame and secrecy. A dangerous lifestyle.

If you would like to receive the article or subscribe to the journal (both are free) email me at dhingsburger@vitacls.org and let me know if you want subscription or single article.

We are also going to do a webinar on the newsletter hosted by the National Alliance for Direct Support Professionals.

Go to this link to sign up (and yes it's free too)


Please register for Let's Talk with Dave Hingsburger: December, 2017 on Dec 20, 2017 2:00 PM EST at:  

https://attendee.gotowebinar.com/register/7478734443151410179

After registering, you will receive a confirmation email containing information about joining the webinar.


I am thrilled that this is happening, and thrilled that those men, who all tested negative are now living positive lives fully supported and accepted. I never saw that coming.


Nor this.

Nor this.