(Not) Alone

Jul. 27th, 2017 08:54 am
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Posted by Dave Hingsburger

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

A Very Short Story

Jul. 26th, 2017 08:07 am
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Posted by Dave Hingsburger

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.

A Quiz - What do You Think?

Jul. 25th, 2017 07:48 am
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Posted by Dave Hingsburger

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?

Inconvenient Lives

Jul. 24th, 2017 07:00 am
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Posted by Dave Hingsburger

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.

Wanna Be My Friend?

Jul. 23rd, 2017 07:44 am
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Posted by Dave Hingsburger

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?

A New Everest

Jul. 22nd, 2017 06:46 am
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Posted by Dave Hingsburger

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.

A Honking Big Piece of Pie

Jul. 21st, 2017 09:03 am
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Posted by Dave Hingsburger

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.

Chairless Tongue

Jul. 20th, 2017 09:07 am
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Posted by Dave Hingsburger

"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!


The Door

Jul. 18th, 2017 06:37 am
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Posted by Dave Hingsburger

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.

The Glue

Jul. 17th, 2017 07:27 am
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Posted by Dave Hingsburger

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.

Anger

Jul. 16th, 2017 12:30 am
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Posted by Dave Hingsburger

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.

Give the Kid a Moment

Jul. 14th, 2017 07:23 am
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Posted by Dave Hingsburger

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.

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