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.