Tuesday, October 27, 2020

Discombobulated

 I slept in this morning. Until 9:00 AM. I woke up to Joe reading and before even rolling over I asked him what time it was. There was a disturbing amount of light in the bedroom. He told me that it was just past 9 AM and I panicked, really panicked. I got up right away and as quickly as possible I was dressed and ready to face the rest of the day. No time for exercise. No time for a leisurely breakfast. Yes, I'm retired but I still have expectations to meet.

Normally I'm up between 6:30 and 7:00, and I like that. I check emails, look at Facebook, Then choose an exercise routine to start the day with. By the time 9 rolls round, I'm fully prepared for the day. This is my routine. I like my routine. I was thrown for a loop by this change.

Joe says that I slept in because I needed the sleep.

He thinks I should just get over it.

But it really has rattled me.

You probably think, "There he goes making too much of too little."

I have a response to that but am too polite to write it here.

I have always understood the importance of ritual and routine. I have always enjoyed the structure they give my days and it makes me feel like I fit into the flow of my day.

But I hear that so many disabled people living in their own homes but under the control of others, that they are too routinized. In my history as a Behaviour Therapist I've seen so many referrals wanting us to introduce change into the lives of people with disabilities, get them off the dependency of their routines. What? When investigated this is always for the benefit of the staff and rarely for the benefit of others.

"He always goes to McDonalds."

"She always wants coffee from Tims."

Big whoop.

Who cares?

Oh, you'd like to go somewhere different.

There's a solution to that.

Your own time.

So much change swirls in the air around people with disabilities that their desire for routine is simply healthy and way to feel that they have some control, some predictability. I think I'd have a hamburger every day if I never had the same staff more than for a week or two, or if I get moved when my bed is needed for someone else and I'm moved without my consent. 

Leave people alone for gosh sakes.

Let them have rituals.

And don't try to tell me that my feeling discombobulated today is silly. But if you do, get ready for an unadulterated two word response.

Sunday, October 25, 2020

The Stoop

 Weird how some things happen.

Three weeks ago I bought a set of three black masks that came sealed in a package. The mask I've been wearing was made by one of my staff at Vita, and I really like it. I bought the new masks because the one I use all the time is slowly losing its elasticity. But. Even with the new masks all sealed up in my bag, I never switched over and they just waited in my bag.

Until.

I was waiting outside the liquor store in the mall and had been for some time. The pandemic apparently isn't hurting the liquor industry. There were two other people waiting outside the store with me. One was an older fellow who spent his time on the phone, the other was a homeless man who had mental health issues. We all stood equidistantly about 6 feet apart. The homeless man was holding his shirt up over his face. This caused his body to contort because he had to pull his head down to get the shirt up over his nose. 

Finally, he slid to the floor, while holding his face covered. He pulled up his pant leg and there was a huge scabbed-over wound on the front of his right shin. It looked painful and there was relief on his face in getting the fabric off the unprotected wound. He and I waited in comfortable silence waiting. When Joe came out of the store, I turned to roll away from him.

But.

Though we had not spoken.

That did not mean that we hadn't connected.

I had seen him.

He had seen me.

I turned my chair back and said to him, "Would you like a mask? I have a brand new one in my bag if you'd like it."

His eyes filled with tears, "I would love one," he said, "you are an angel."

Joe got the package out of my bag, I ripped it open, and then Joe took one and gave it over to him. He put it on, immediately, and dropped his shirt allowing him to sit upright.

"Thank you," he said.

"You're welcome," I said.

And that was that. I wondered about the vague feeling of comradeship that I felt with him until this morning. At church, online of course, there was a reading from one of Harvey Milk's speeches and then the minister expounded on it. The topic had been Harvey Milk's belief that we all need to sit on the stoop together more. We all need to see and interact with our neighbours to stay real and to stay connected.

I think that was it.

We had each sat on the stoop, unspeaking, but sharing space and time.

In doing so, he became my neighbour.

And the expectation becomes the commandment, "Love thy neighbour."

Saturday, October 24, 2020

Sofas and Couches

I was attempting something very difficult, something I'd failed at before many, many times over the course of my life. That I was making this attempt even shocked me, I'm still occasionally surprised at a decision my mind makes somewhat independent from me. I began with the expectation of failure and sure enough it was hard when I started, much harder than I expected. The was an old challenge that seemed new again.

Continuing on, I found that I had to push myself through the voices that formed in my head. The one's that told me I was stupid, that I was fat, that I was ugly and that I'll never amount to much. The one's that told me that I wasn't strong enough, I wasn't focused enough, that I wasn't good enough. The one's that told me that I was worthless, that I was useless, that I was nothing but a disappointment.

Those voices were loud. Really loud. For each one of them I heard the voice, knew the person who spoke it, and recognized the desire they had to pummel me into giving up.

Like many people, these voices live, and they become active when I begin to believe in myself, when I begin to try to become someone a little different, a little newer, a little prouder.

Once I was past those voices, they are always lazing and call at us from couches where they lounge eating chocolates, then it was clearer saying.

Why does the voice of every bully and every hater have space in my head?

Why does my mind allow this?

I think they are invaders send from a past time. I think they are from people who never think of us now, who may not remember why they decided that cruelty was the path they'd follow with me. Why are so many of them teachers and other adults who surely know better.

A new voice has taken a spot on the sofa, I managed to do what I've not done before, yes it was hard but also yes I will do it again.

I will for the rest of my life try to control the voices that sit too comfortably in my head.

Thursday, October 22, 2020

Hills and Roads

 It's a weird thing to remark upon, but I have battles with drivers of cars in the mall parking lot. As I think you know I am trying to keep my strength up and get decent exercise by getting out of the car and then rolling way down a hill, further and further each time, and then pushing myself back up. I only rarely now get offers for help pushing myself, covid has made us wary of strangers and their touch. But when I arrive back at the car, I pull up to the road I need to cross in order to push up and into the mall.

It's a busy road but I've found the drivers really respectful of me and my need to cross. I don't like feeling rushed to cross and then heave myself up the curb cut. So, I usually wave people along to pass me so I can both catch my breath from the climb and wait for a legitimate break in the traffic. Sometimes this means that I have to wave by 5 or 6 cars.

And that's where the dueling begins. 

I wave at them to pass me.

They wave for me to pass.

I shake my head and wave to them again.

They smile and wave for me to go.

This continues while cars line up behind them. Once they've gone and are moving, the other cars are easier to shoo along.

When the case is clear, I have breath and power and then do the last big push uphill and into the mall.

I kind of think that this is a wee bit lovely. They are pausing and giving me time and space to pass. That's all I've ever wanted. That it takes a wave or two to get them to move is of little consequence. They are acting in good faith with me and I with them.

In these days of darkness, the pandemic clouding all of our lives, it's nice that we haven't devolved into screaming and ranting, it's nice to see the Canadian heart rise.


Tuesday, October 20, 2020

Because Love

I am getting reading to do a lecture/workshop next week on serving people with intellectual disabilities who identify as LGBTQ and am therefore running through my memories of those who I have served. I remembered in particular a man I was working with when I was in the sexuality clinic. The clinic was only into its second or third year and had an advisory committee overseeing many of the decisions that were made in service to people who'd made serious sexual mistakes or offended. He came to me one day and asked if he could speak to someone gay about being gay because he had some questions. He knew that I was gay, but I was also part of the system, a system that he didn't trust.

As an agency, we discussed this up, down, and sideways. We didn't want to be accused of leading people down the garden path to homosexuality, which is I believe, the only way you can get there. But finally all agreed that the request was independently made and we needed to honour it. I looked around and found no one who felt competent to talk to this man. His disability frightened people away - "I don't know what I'd say" to which I said, just answer his questions.

Finally, I found a gay Baptist minister (!) who was willing to meet with him. The day came and I met the minister about half an hour before the man who had requested the meeting was to arrive. We talked and he was a wonderfully gentle man and took what he was about to do seriously. When the time came I brought the two men together in a large office, I made to stay and was asked nicely to leave. My heart skipped but I acquiesced. 

They talked for about an hour and when the door opened I saw the man I supported smiling, he thanked the minister and then me. I asked him if it was okay for the minister to tell me what they talked about and he said that was fine. I closed the door behind me and sat down.

The minister told me that he had only one question, "Can two men love each other?" At first the question was misunderstood and the minister started to talk about sex and consent but he was stopped. "No, I asked if two men could love each other, not can two men have sex together, I know that."

Love.

That's what he wanted to know.

Can two men love each other?

It's a more difficult question than you might think because in an agency or a group home your rights to a sexuality are adjudicated by the people who say they work for you. Even today, years later, that can be a dangerous question for someone to ask. It can get you punished. It can get you hurt. It can get you marked for abuse and subjugation.

But.

Love, he was told.

Was possible.

He left happy, he left with his heart full, three years later he was in love and preparing to live with his boyfriend. Because love. 

Sunday, October 18, 2020

The Cup on the Shelf

 When we went to bed last night Joe told me that if I was up first to be aware that the kitchen hadn't been cleaned up and I'd come in on a mountain of dishes. I told him that I didn't mind doing them, and in fact, I don't. 

Sure enough in the morning, I go into the kitchen and turn the light on, and organize the dishes and then do them. Now, I don't air-dry dishes. I like to dry them and put them away, I don't like a pile of dishes left to air-dry. I think it looks messy and I hate when going to do the dishes to find I have to put away all the ones left first. But that's me. Joe disagrees. We don't talk about it anymore, he does it his way, and I do it mine.

But that's not what I wanted to talk about. Something happened when I was drying the cups. I normally leave them on the counter for Joe to put away because they are on a shelf just out of my reach. But when I put the plates away, somehow, at that moment, the second shelf seemed almost in reach. I haven't tried for a very long time and I thought that stretching is a big part of my exercise routine.

I picked up the cup and reached, couldn't do it but I was close. I moved my wheelchair alongside the counter and tried again. Plop, the cup was on the shelf. I was jubilant.

Now here's the thing. If someone sat me down a year ago and asked me what my goals were, I'd never have said putting cups of the second shelf. I would have given other goals that would have me taking more care of our place, but not that one. I'd ruled it out. It's weird to say that my dreams weren't big enough to include one little task.

And there's the thing.

Dreams need to be vast.

Dreams need to encompass impossibles.

Dreams need to go from tiny to gigantic.

And my dreams do not need to meet your approval. You do not have the right to scrutinize and criticize my dreams. Saying, laughingly, "Hingsburger's big dream was to put a cup on the second shelf, what a loser," disqualifies you from being welcome in my life.

And here's another thing.

Dreaming has to be taught. It's a skill. People with intellectual disabilities, like a lot of people, maybe some of you, have had their dreams dimmed by a lifetime of reduced expectations and a thousand voices with a million opinions weighing down the lighteness of dreaming into the darkness of goals set for the needs of others. The burden of this bends the back of our will and stunts our ability to dream.

Here's what I'd like to see on a plan:

Teach dreaming.

Here's what I'd like to see done.

Dream following.   

Saturday, October 17, 2020

Backed into a Corner

 We went into a shop, a small one, because we wanted to see something that had been displayed in the window. We approach the young woman who works in the shop only to find her quietly telling a man, who is not listening, to put his mask on. He is talking about an app on his phone and how wonderful it is. He opens the app and it plays a military kind of anthem. He keeps walking towards her, she keeps backing up, he's talking loudly to be heard over the music playing. Her hand is up. But stop did not mean stop to him and he kept advancing. She was being backed into a corner with no escape.

We took all this in in an instant. And it took an instant to respond. She was talking to him trying to take control of the situation. Would our help be wanted? Would we be intruding on a battle that she needed to fight on her own. I didn't want to take from her the victory that she would feel if she got it under control. Was my urge to intervene driven by sexism or by her actual need? Then I thought, hell, if I was a woman I'd probably intervene too. Then I thought I'm not a woman and can even presume to know what a woman would do.

All that thought took just enough time for panic to show on her face. She didn't even notice that we were there. And though we were in plain sight, neither did he. I rolled forward, Joe was right behind me. I spoke loudly "Hey, where is your mask" I figured it was safer to call him out over the mask than his behaviour towards the woman in the store. He turned towards me briefly and in that moment I saw her dash to the desk to call security.

Joe and I are not people who have threatening bearing. We look like shmoos, or maybe schmucks, who could throw a punch into a bowl. But he eyed us up, forgetting her for the moment, advance towards us and then brushed by us heading to the door where he was stopped by security.

The woman thanked us for intervening and helped us to see what we'd come in looking for. She rung us in and sent us on our way.

She looked very tired.

At home I wondered, was she tired because a man kept advancing on her in the store.

Or was she tired because we intervened in a situation that she felt in control of.

I don't know.