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.

Friday, October 16, 2020

Speshul Indeed

 The gym that we go to has two entrances. We are expected to use the lower entrance because the gym is just inside the doors. However, while that entrance is technically wheelchair accessible, the experience of it isn't. It's made up of big square pieces of concrete that are pushed together like giant bathroom tiles. But the difficulty is that each of those has settled differently and a pushover them means being jousted around in my chair. Once I was almost thrown out of my chair when my front tires caught in a deep hole between the slabs. 

Because of this, we always entered at the other door. That entrance is extremely accessible. When the pandemic hit and when the gym opened again, it was determined that the rule was we had to enter via the bottom entrance. I spoke to them, told them of the issue I had with coming in that way, they were awesome. Really awesome. They went through the procedures we'd need to go through coming in the door we wanted and our names were put on a list that approved the really accessible entrance for me.

This worked well for weeks and most of the people who work that door know who we are and know to admit us without any questions except about covid symptoms. But yesterday someone new was at the door and she directed us to the other entrance. I explained to her that if she checked she'd find our name. She kind of made a big production of going with us and going to let them know at the other entrance, where we always check in again, that we were coming.

As we got on the elevator she made the comment that we came in that way because we were speshul. I grabbed the elevator door and said, "We aren't special, this door is more accessible," in a very stern tone. I was angry. Really angry.

"Special" is a term I hate in reference to disability and it's often used in that mocking tone that lets you know that your rights as a disabled person are seen as a gift or candy given to you to make you happy. My rights are not 'Special' in this case it was the right to access. When you consider what disabled people want, and I'm not speaking for all disabled people, none of the things on the list are "speshul".

Access

Opportunity

Equality

These aren't gifts that we want they are rights we demand. They aren't 'speshul' they are things that form the basis of the struggle of disabled people for a seat at the table, a piece of the pie, a voice that is heard.

I'd love terms like 'special' to go to the dump heap of history beside all the other words used to separate and denigrate people.

I'd love to hear from you about the words that you find galling or upsetting when used in reference to someone with a disability. 

Tuesday, October 13, 2020

With Maple Syrup

 OK, now I can start.

I had opened blogger to write this post when I saw out of the corner of my eye that last evening's dishes weren't done. Typically Joe does them before we go to bed, but as we've been staying up later and later because we realized that retirement doesn't have a bedtime sometimes the dishes aren't a high priority when a warm bed calls. I turned away from writing and set about doing the dishes. Joe had them organized, which is half the battle, and then I washed them, dried them, and put them away. I'm now back.

As I mentioned before, one of the fitness folks that I follow and work out with, he on YouTube, me on myself commented that as you gain strength and gain flexibility you need to use them in everyday life. He suggested that working out was worth little if it didn't change the rest of your life. So, I've been trying to incorporate into my day times where my strength or my reach is naturally needed. Doing dishes is one of those things. I notice how I can now reach higher into the cupboard to put things away, I notice I have the strength to lift some heavy items up an into a cupboard that has been out of my reach since we moved here.

Let me pivot here to our support of people with disabilities. We can spend so much time teaching them things in classes and then never let them use it in real life. One woman with a disability learned to make several meals during her cooking class at the day program but was not allowed into the kitchen of her group home. She had learned a skill that's important for two reasons, it leads to greater independence and it leads to a sense of contribution. I don't do dishes for Joe's thanks, I do dishes to contribute to the running of our home.

Skills matter.

Strengths aren't strengths unless they are used.

Why do agencies who forbid sexual behaviour pay consultants to do sex education classes?

Why do rights training when schedules and rules and staffing disallow or make impossible the free use of rights?

Now of course I believe that everyone has a right to learn about their bodies and everyone has a right to learn that they have a voice and they need to use it - but you can see the position that people with disabilities are put in. If they exercise what they learn they will be punished.

I know this because that woman who learned to cook, was home sick one day and the staff popped out to the store when she thought that the woman was asleep. She came back to the smell of French toast coming from the kitchen.

She lost 3 tokens on her program and the staff ate the toast.

Sunday, October 11, 2020

Uddle

 I really had to go.

But when I arrived at the accessible family room, it was occupied. I waited, patiently. For a very long time. I realize that time slows down when you are having a conversation with your bladder, but in actual literal fact, it was a very long time. I was just started to head over to the elevator to go up to the other one upstairs, calculating my ability to roll and hold at the same time. I watched with envy as people flowed in and out of the other washrooms, no line up there, and began to push. That's when one of the cleaning staff came along. She asked me if I had been waiting long. I said I had.

Instantly she pounded on the door. It opened right away and three teen girls came out of the toilet. The cleaning woman was having none of this. She stopped them and let them know that what they had done was act with pure selfishness. Did they see me a disabled customer waiting for the room? I piped up and said, you know there are only two of these here, using it when you don't need it can cause a disabled person to embarrass themselves. 

But the cleaner wasn't done. There followed a lecture and at a certain point I saw the initial shame the girls felt for using the space wantonly turn into anger and annoyance and I knew the cleaner had crossed a line and now the point would become the cleaner and not the original mistake.

That's the thing with advocacy, isn't it?

You need to stop when you've won the moment.

Also, if you are going to take on some teens about misusing a disabled space, you need to get out of the way so that the letter pee remains in the alphabet and not in a puddle..