Tuesday, December 11, 2018

Encore

Have you ever had a behaviour that you wanted to get rid of, an impulse you wanted to control or a goal you wanted to achieve? Have you ever tried everything for change but find that you keep making the same bad decision over and over and over and over again?

That's me.

Right now.

That's me yesterday.

I firmly had a view as to how I would handle a high risk situation full of prompts and triggers and history. I did self talk and affirmations. I told myself a social story with victory at the end. I reviewed my strategies. I was confident. Even with all past failures, I was confident.

But.

All the preparation was nothing.

Trigger.

Old habits, old reactions, bad decisions and worse choices returned. Like a song that you'll never forget, "La La La La La La you're total failure, Oh Oh Oh Oh you're a total fool" that little ditty that goes round in your head chastising you.

That's me.

Right now.

That's me yesterday.

I freaking know better.

I freaking want better.

I freaking an really trying.

But it's so hard. Just so hard.

Changing behaviour is hard.

And consequences, there are many but the worst is the words I now allow myself to call myself and feel justified in doing so.

Everybody can learn new ways of doing things.

I believe that.

Pity that belief doesn't mean squat when you dance to old rhythms does it.

There's always tomorrow.

Always another humiliating failure coming down the pike.

I need another strategy, maybe one that acknowledges that failure is part of journey.

Oh. Gosh. Doesn't that sound like crap?

Think I'll just beat myself up for a few more hours, why not, it's never worked either.

Saturday, December 08, 2018

Oh, Oh, Oh, Conversations with Cripples

Three conversations:

1.

At the gym, for exercise, I go up and down the ramp somewhere between 10 and 20 times. I'm not travelling for a bit so I want to do exercise that keeps my 'pushing' skills at their max. It's a long ramp, a good grade, and it really works my muscles. I arrive at the top to a question from a fellow member who had just come over to work on the cable machine at the top of the ramp:

"So, why do you push yourself up and down the ramp. You'd think you'd be tired of pushing all day."

"So, why do you run on the treadmill?"

(pause)

"Oh."

2.

I am at the till having made a purchase, there is a little bit of a line up behind me. I had taken my gloves off so I could complete the transaction. When done, I take a moment to put my gloves back on. I never push without gloves, today it's even more important because my wheels are both wet and dirty. The clerk, looks up at an impatient line-up (putting Christ into Christmas is way easier that putting Christ into fellow shoppers) and asks:

"Why do you wear gloves anyway?"

Gloves on, I roll back to where I can look down at the tellers feet.

"Why do you wear shoes anyway, you're indoors?"

"Oh.

3.

At an informal gathering people are chatting, someone I don't know is there and they are asking their friend about who I am and what I do. Their friend and I aren't friends but we have friends in common and they answer by describing a bit about what I do. Later I am asked by the same person who asked the first question (lots of points if you followed all that) in a mammoth act of ignorance about disability, benefits and the poverty line:

"Can I ask you why you work, surely you could live off the benefits?"

"Do you work?" I ask.

"Yes, I love my job, I ..." when they finish I say.

"I don't understand why you work, surely you could live off unemployment and other benefit packages."

"Oh."

Question for all of you. Are we that alien to them? Are we so far from the norm that they can't see any typical motivations for us? How do people grow so ignorant about people who live in their midst? But I guess this also explains racism, sexism, homophobia, Islamophobia, disphobia, and ableism, huh?

and I'll throw in a 4th one for free:

"Why do you write a blog?"

"Because I enjoy typing."

Friday, December 07, 2018

One of Those Times

So we were headed to the elevator when one of the three women, all pushing their babies in strollers, used the 'R' word in a sentence. As it turned out they ended up right behind us as we waited for the elevator to arrive. The door opens. I turn to both back in and to face them.

Now, you may find this hard to believe but I find it very difficult to confront strangers in situations like these. My heart was pounding in my chest. And the reason I continued, the reason I spoke up, was because my heart was pounding in my chest. I care about this. Nervous or not, I care and my voice is necessary.

I said calmly, "Excuse me," I spoke to them as a group even though I knew which one had used the word, none of them stopped her, which meant all of them did it, listening without complaint is no different than saying it yourself, "I don't mean to enter into your day but I have to, I heard you use the "R" word and I'm asking you as a disabled person to think about the words you use. That is a really hurtful word. It can devastate someone's spirit. So please don't."

They were thunderstruck.

The elevator door was trying to close but jumping back as soon as it started, as if it were scared of me too.

Then one of them, one who did not say the word said, "It wasn't us! I would never, ever, use that word. Ever!"

I had no intention of pointing out the one who had spoken the word, I could see the emotion in the group and felt that now was the time to leave it to group dynamics. I said, "Oh, if it wasn't you, I apologize. I heard the word used behind me and I feel that, as hard as it is, I need to speak up. Everyone deserves to be safe in the world."

I backed in and the door closed.

Even though they denied it and I knew that one of them had said the word, I apologized. It was important to simply not look like an asshat at that point. I didn't want them to easily dismiss me.

Working towards social change sometimes takes more courage than I want to have and the ability to appear calmer than I ever feel.

But there are times when our voices are needed and necessary.

This was one of those times.

Tuesday, December 04, 2018

Bullies and Bigots and Big Mouths Beware

Social Violence. That's what I call the day to day interactions with bullies and bigots and big mouths. Those people who intrude into my day to make comment on my body, my disability, and my way of being in the world. It's a daily occurrence that I could do without. But, I realized only recently that somethings changed in me.

I've been teaching people with intellectual disabilities about their inner voice and the power they have to down out the sounds of social violence with their own thoughts, their own perceptions and thereby become their own master. They can school themselves about who they are. Often I have had to teach about language of self-positivity to people who are used to reinforcement and praise for behaviour but have not idea about the need we all have for personal acknowledgement. There is a difference. I love teaching this. I love watching the effect of new language on old wounds. I love seeing, sometimes, and almost miraculous response to the training.

I've been teaching this, because I've been doing this for years. Intentionally responding to hateful comments, to words that violate boundaries regarding language of the body, to the purposeful, targeted, attacks in regards to both difference and disability, with new words, different words, coming from a different voice - my own. That voice started out with the volume turned down. It was if I was afraid to wake the anger that grew inside of me, so affirmations were whispered. But now, that voice has become strong enough to do it's job.

The words of others no longer teach me who I am. I had let that happen. I had let them tell me that I was ugly and stupid and fat and useless, and I accepted those words for what they seemed to be - information for me to process. Declarations, in absolute terms, of how I should see myself. Those words did not wound me, they described me, they gave me a language with which I could refer to myself. It was only later, when they coalesced into something dangerous, that I understood the mistake I had made.

The view of other no longer instruct me about what I need to do and who I need to be. I had let that happen. I had tried to fit in. I had tried to blend in with the bland and tone my difference down. I had tried to walk the path set before me and in doing so lost my way. But now, I need no instructor, I alone see my path and I alone determine the speed at which I travel.

This Christmas, out doing shopping and other holiday things, I keep hearing the words and the comments made. The social violence is still attempted. But I am not longer tempted, even slightly, to listen.

I am not done yet.

But I am me, and I have arrived at a stage in my life when that's good enough.

I am not done yet.

But I alone know what needs to be worked on, the goals I have for myself.

Let the bigots and the bullies and the bigmouths have at it, the community is mine too, I cede no space and no territory. You  can't drive me into hiding. I am OUT and now understand exactly what that means. It means that the world is mine as much as it is anyone else's.

And for what they have to say, STFU, no one's listening any more.

Monday, December 03, 2018

9 Years Old: International Day of Disabled PErsons

"I'm bored talking about this, can we talk about something else?" Sadie is only half joking as she's listening to Joe and I talk about how difficult it had been for me to get an egg salad sandwich because of some physical barriers that made it impossible for me to hear the sandwich maker and for her to hear me. Sadie slumped back into her chair and then asked for the topic to be changed.

I get it.

I understand why she wanted the conversation to change. We go out a lot with her and her sister and this is a conversation she has heard over and over and over again. She's 9 years old, an expert on access and accessibility, and she simply doesn't want to hear another conversation about another barrier encountered.

In her opinion access is simple.

She's 9.

She's right.

International Day of Disabled Persons is today. It's not on the news. There were no stories connected with the day. I've seen, outside my own organization, no advertising about anything happening in the city around me. There may be. But it happening in whispers.

Sadie thinks they should just make things that work for everyone.

Sadie thinks that conversations about inaccessibility should be obsolete.

Sadie thinks that we should be able to talk about what we are doing, not the struggles involved.

At Vita, where I work, we will be having an open mike where people with disabilities can come and say what they please about whatever they want. No non-disabled speakers will participate from the podium.

Here's our measure about an event like this:

1) Did disabled people plan it?
2) Did disabled people set the rules?
3) Are all disabled people welcome?
4) Are non-disabled people welcome but made realize it's not their day?

It's simple.

I'd like to go out with the kids and not have that conversation ever again. Not because we are avoiding the topic but because the topic doesn't come up.

International Day of Disabled Persons:

Our voices.

Our choices.

It's really, really, simple.

Sunday, December 02, 2018

She Was Exhausted

Mall.

Shopping.

December.

Yikes.

We were doing some last minute shopping for parcels that need to head west on Monday and the place was packed. This makes pushing my chair arduous because I have to be hyper-alert for the walkees who legs seem to simply not know which way they are going next, like the brain whose pilot is on a break and who detached the legs on the way out. Then there's the one's who see me and freak, the dart on this side and then that side, panic in their eyes, trying to be a good person but simply not able to make up their minds which side they should walk on to keep themselves safe and to give me room. All the dashing back and forth is dizzying to watch and nearly impossible to navigate. Sometimes I just stop and say "Please go ahead" and wait until they and their panic have passed before beginning again.

But what I wanted to write about was what I saw happen, and when I intervened, at one of the areas of the mall where people who don't have chairs are given some, they willingly adapt the environment for walkees, so they can rest. I saw a woman with an intellectual disability with her staff. There were two possible places for them to sit. Conveniently the two seats were facing each other. The staff was desperate to give the choice of the two seats to the individual being supported. Now that's cool. But the desperation and eagerness can simply make people slightly wacky.

The staff was in front of the woman with a disability saying, do you want me to sit here, or here; here or here' here or here. Each time she offered she moved her body slightly to indicate which chair her butt would sit in on the simplest command from the woman with the disability. Every time she moved the woman with a disability made an attempt to take a seat but was then blocked by the staff going back and forth and offering a choice in chair.

I couldn't take it.

I have been often blocked by people trying to help me and it's funny. At first.

I stuck my head in, uninvited I know, and said to the staff, "Just offer the choice and then stand still." The staff looked at me, affronted for a second and then, realizing, started to giggle. She offered a choice the woman with a disability sat down, looked at her staff and said, "That was exhausting."

We all laughed.

Hard.

Yep, sometimes our desire to be helpful makes it impossible to see how very unhelpful we have now become.

Saturday, December 01, 2018

Fear. It's Coming Again. A Post for World AIDS Day

Fear.

Is lessening.

Because.

We aren't listening.

We, the LGBT+ community, aren't listening to our own history. We've been distracted by the progress made, medically, the advancements made, scientifically, and the benefits resulting, from the research. These are things to celebrate. They are things that have been life giving, life sustaining and life extending. They are modern miracles created in labs by people of determination. We, the LGBT+ community, fought for this, fought for our survival, and to the extent that these are available, we've begun to feel like we've won. But.

Fear.

Is lessening.

Because.

We aren't listening.

We are not listening to our history. We are not listening the the lessons learned from the dark times. We are blinkered by the hope of better medications and new scientific breakthroughs. But the history of this disease isn't only a history of scientific inquiry. It is also a social and political history.

It is a history of abandonment.

It is a history of our disposability.

It is a history of hatred.

People didn't care. Remember that? People just didn't care. We were dying by the thousands and people didn't care. Our lives mattered only to us. Our community was devastated both by disease and by the indifference of others. AIDS became a joke attached to our community. Remember those ugly one liners? Remember the laughter. We were dying and they were laughing.

Punishment. They called the disease a just punishment. For the sin of loving. For the sin of forbidden touch. Our world was falling around us. We couldn't keep up with the deaths. And we were told it was our fault. We were unnatural. We were singularly sinful. We were hated by a just God who finally was taking his wrath out on us. We were dying and they were delighting in our deserved fate.

Research and resources were made available grudgingly. "Let them all die," was the angry response to spending dollars to find a cure or a way to extend life after diagnosis. We had brought it on ourselves with our filthy lifestyle and dollars shouldn't be spent that would end up just encouraging more of that behaviour. The behaviour of loving.

It was the behaviour of loving that galvanized us to fight back. Activists took to the streets. People living with and people dying of AIDS became spokespeople, advocated with a strength that astonished everyone. We took each others ungloved hands, and we marched forward. The behaviour of loving is an amazing force.

Fear.

Is lessening.

Because

We aren't listening.

History tells us that attitudes towards us can turn on a dime. We may have pride parades, we may have become a consumer group, we may be able to marry - but all it takes is a crisis. Of any sort. And the hatred is back. Hurricanes his Florida? Gays caused those. Earthquakes shake the west coast. Gays cause those too. We even have the power to cause freezing cold weather. 

The hate isn't gone.

It's just parked.

It's just waiting to be mobilized.

It's waiting for our complacency. 

But the lessons of our history, remembered today World AIDS day, are important. We need to remember the strategies of resistance, the methods of channeling outrage into change and the ways of coming together. We need to remember the feel of our hands joined together in community. We need to remember those that were lost, those we are still losing, and we must remember them in context of the times in which they lived. The time of laughing and hatred and blame. They died, many of them, to the scorn of the world.

We must remember their scorn.

We must remember their hatred.

We must remember their cruelty.

Because it's coming again.

Fear.

Maintains vigilance.

When.

We've listened.