Saturday, October 31, 2020

A New Week Starts

 This was a stressful week. A lot of really early morning and a lot of online lectures, meetings and, webinars. One of them was a brand new lecture that I'd not done before that had me wild with anxiety, others were old friends revisited and updated. Because of the spacing of the events, I haven't been able to go out this week. I'm not one for going out after 5, I'm too tired by then.

I think it was Wednesday when my will collapsed and I gave up exercise and couldn't care about what I ate. Too, I think that's when I became a little bit grumpy. If Joe were writing this he may express that differently. Let's just say I wasn't the ray of sunshine he expected when we married.

Joe understood the pressure I was under to perform. He knew that I'm adapting to lecturing and not seeing anything but myself on the screen, not getting any feedback or energy from the crowd. He knew that I was terrified of bombing with my new material. He knew all that and was massively understanding all the way through. 

But I wondered near the end of the week how long his patience and forbearance would last. He's a great guy but sometimes my anxiety spills out of me in ways that involve anyone around me. I pulled it in and made it through the week still married and still comfortable in the love that I live with. But I need to remember that Joe's love for me isn't expected to be bottomless and I need to remember that I have to control myself a little bit more.

So I'm up early today. I can't be Little Miss Sunshine. But. I have polished my dome and can reflect any sun that come my way today.

Don't take for granted the love that you are given.

It's a gift you don't always deserve.

Tuesday, October 27, 2020


 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.


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.


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."


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.


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".




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


 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..

Saturday, October 10, 2020

A Warning

 One of the mistakes I made in my working life kind of intersects with my personal life. As I think about it, I don't really understand how it happened or, more precisely, how I let it happen. I worked very hard for many years and grabbed on to every opportunity that came my way. I remember reading a journal and thinking, "I have something to say about this." The journal had been publishing articles regarding deinstitutionalization because many provinces were moving toward decriminalizing people with disabilities, they had been locked up for the crime of difference and repatriating them to their home communities.

I had noticed something with the people I was supporting during this journey and that was that deinstitutionalization may have meant something very different to the people we supported than it did to us. To us it was an ideal, an advancement, but people with disabilities hadn't been asked they'd been mandated to move and they were expected to feel gratitude towards community staff for almost everything. The burden of gratitude can be wearing, we all know that. So, I wrote about deinstitutionalization from a different perspective and, wouldn't you know it, my first publication in a journal.

That's a big deal.

There's a shift in your perception of yourself.

There's a realization that some of the limits you've put on yourself are shackles and fetters that may be more self-imposed than one thinks.

And what did we do to celebrate this?


We moved past it towards the next goal.

First book?

Nothing, I started another.

First award?


Now I don't mean that I didn't have a reaction to each of these. Of course I did. I always felt a boost, a change, and then I packed away the experience.

Now that I'm older, much older, and much is behind me, I ask myself why didn't I take the time, why didn't we as a couple make the time to celebrate. To crack a beer and toast the moment? Those moments are with me, but sometimes as a list of achievements that go in a resume that no one will read anymore.

Let me serve as a warning to folks reading this.

Take the time.

Make the time.

To celebrate your life. I've talked to all of my staff about this, warned them of a life that ignores accomplishments and celebrates none of them. I thought it would be 'too much about me' and that it was egocentric, it isn't. It's an honest celebration of an actual accomplishment.

Celebrate your life.

Celebrate your accompishments.

Live richly.

Thursday, October 08, 2020

What Just Happened

 Just a couple of minutes ago we got off the phone having cancelled our Thanksgiving dinner plans. It was something that we were looking forward to and something that we'll miss but we felt was the responsible thing to do. Ontario's cases of COVID-19 are climbing and the government asked its citizenry to forego the Thanksgiving celebrations this year.

The one nice thing about this damn pandemic is that it is an opportunity to show our friends, our families, our neighbours and our country that we care about them, that we will take actions to protect them and that we are part of the active fight against this disease. My patriotism is not always on view. Now it's called for and it can be seen.

There is a mask on my face because I want others to be safe.

I wash my hand and publicly use hand sanitizers because I care for those working in stores and shops.

Quiet will rule at our house on Thanksgiving because I want to defeat this scourge.

The one nice thing about Thanksgiving, however, is that it can't be cancelled. No virus, no bug, no invisible army can put a stop to the act of giving thanks, of showing appreciation of expressing gratitude. No, that I do, that we will do together, and we will do it with the all the warmth our gay hearts can muster.

See my mask.

See my care for you.

See my sanitized hands.

See my commitment to your safety.

See our dinner celebrated just for two.

See my pride in being able to fight against this foe.

On Sunday, we will give thanks as we find ourselves awash in gratitude that we are still safe and alive and contributing to the world we live in.

Wednesday, October 07, 2020

Should We Become Aware

 Just reading an article that tells me that, in the United States, the disability vote has risen to by 20% since 2008 and that outstrips the mere 12% growth in non-disabled voters. If organized properly and if seen as a voting block, the disability community could hold the key to many states and districts, and potentially, the election at large. 

I found this interesting because, as I follow politics, during the United States election seasons, primaries included, I heard precious little in the way of discourse on issues that are specific to those of us with disabilities. Don't even suggest that most issues are of interest to people with disabilities because of course, I know they are but there are issues that speak directly to the disability community that benefits others as well.

But, I'd had to go looking for candidates' positions on disability issues. I had to double-check to see if there were any staff of any politician in the primaries that were prominent in their policymaking and visible in their presence. There were probably more but the one who had the highest-profile was a woman who was a wheelchair user who worked with the Buttigieg campaign.

In the future politicians need to be wary of ignoring a sizeable percentage of the population. We are growing not only in numbers but in awareness. As people shed shame and the obligation of gratitude, they become aware of something more powerful than even pride - rights.

Last mayoral election there were all candidates' meetings set up around disability issues. I attended those and found sizable audiences and a crowd that, to a one, had found their voice. A couple of politicians looked shocked like they thought we were a photo op, not a voting block.

Should we continue to find our place in the political discussions in the future, there's no telling, as we are a minority group that includes all minority groups, what we can bring to the table.

Tuesday, October 06, 2020

He Tells Me

 Without fail, I will hear from him at least twice a month. We met on Facebook when he requested to friend me and I accepted. When I accept someone I go to their page and if I see that they are involved in any way with disability or advocacy, or if they have some other commonality with me, I accept. I remembered him by the first visit to his page. He's a self-advocate with an intellectual disability and he's pretty outspoken. I liked that.

About a month later after I posted something, he sent me a message, "Are you gay?" he asked and I replied that I was. That was it. I didn't hear from him again for about six months. Then another message. "I'm gay too," he said. I said something about being out feeling good and again I didn't hear from him for a while.

Then again, "I'm gay," he said. "I know," I said. And that's when the pattern begins, he keeps telling me that he's gay. It's been a few years now and I have simply come to expect the message. Over time my responses have become more fulsome and I usually say something positive about being gay, and gay pride, and how much I love my husband.

But all I ever got back was, "I'm gay."

A statement.

Last time he wrote I asked him if he had a boyfriend, or if he went out to the clubs. I wanted to broaden our conversation a little bit.

He wrote back immediately.

"I'm gay."

"OK," I thought, "He's not going to engage with me." 

Then yesterday, two quick messages.

"I'm gay."

"They won't let me."

I wrote him back asking a few questions, but I've not heard anything back.

And now, I'm really worried about him.

"They" can be terrifying.

"They" can be cruel.

"They" who embrace their "They-ness" drink from powers segregated faucet.

Monday, October 05, 2020

A Committee of Five

 Yesterday, I had plans.

We'd booked time at the gym. We planned to get to the mall. There were some groceries to be picked up. 

It all came crashing down when I lay down to read for a few minutes in the morning. Suddenly the bed was warm, and outside was cold. Suddenly I relaxed deeply in ways impossible during employment. Suddenly, I was asleep.

Joe popped in and shook me gently. He asked if we should be getting about our day, and in that moment I realized that I was already getting about my day and I asked him to wake me in about half an hours. Two hours later I roused myself from a really restful nap.

I went from bed to chair, wrapped myself in blankets, set the chair to recline, and I snoozed through a movie I had trouble understanding because it was just a bit to the wrong side of artsy. The subtitles blurred and I was off again. Joe knows not to wake me when I'm asleep in my chair, so he simply let me alone.

Finally awake, we had tea and cookies and some companionable time.

We were going to cook.

We had leftovers.

What a joy it is to be in command of your own time. To have schedules be just schedules rather than objectives. To have the fluidity of the moment make a decision that can overturn other decisions, other plans. 

It was never more clear to me.

I don't live in a system.

Where my life belonged to other people and my time was governed by the needs of others. Where choices made on Tuesday were firmly nailed to Friday's door. Where my "now" was never a real possibility anyways. 

I don't live in a system.

Where my refusal is seen as behaviour, where my 'no' becomes 'yes' at the will of another, where there are real and dire, consequences to the choices that I make.

I don't live in a system.

Where the mood of another determines the course of my day. Where the notations made in a book determine the course of my evening. Where the graph determines what choices I am offered.

I don't live in a system 

Where choices are offered, and therefore can be denied. Where I get to do what I want only after I do what you want. Where my dreams are calibrated, then smashed into achievable goals.

No, I don't live in a system.

So I took a nap yesterday and snoozed my way through a day, that wasn't planned, that wasn't written on a list and, that wasn't approved by a committee of five.

Sunday, October 04, 2020

The Heavens Crashed Down

 She saw us and pointed to the end of the line. I kept on going, I needed to speak to her. She was the guardian of the gate. As people rolled up to the registered, she directed them where to go. I wanted to speak to her and ask her to send me to the accessible aisle. I stopped and waited for her attention, she was pretty full of self-importance and clearly loving the role that she had and the wee bit of power that came with that role. When there was a break I told her that I was getting in line but I'd need to get directed to the accessible till.indicating which one it was by pointing at the large wheelchair symbol hanging above it.

She spun on her heels and barked at me. "They are all accessible now get into the line-up." I did as I was told and when getting to the front of the line, indicated again where I wanted to go. She shook her head and sent me to another aisle. I could get in the opening but the lane constricted and it would be hard pushing through. I backed up as Joe unloaded the cart and rolled over to the accessible aisle. What did I discover? It was larger, leaving lots of room to get through.

I spoke to her and said, "I asked you for the accessible aisle and you sent me to one that wasn't." She claimed they were all the same, I ensured her they weren't.

I had two concerns:

1) I have a right to accessibility and to request the accessible provisions made by the store.

2) Her voice was degrading and insulting and patronizing. All at once.

As it happened the lane she put us in opened out right at the manager's office. As it happened the manager was in. I stopped to make a complaint describing the refused request and the tone of voice used on me. By now I was upset, I just wanted to fucking shop. I didn't want to engage in education or complaint making, I just wanted to get out of there incident-free

When I described being refused the accessible accommodation, before I got to the tone of voice, the manager had risen from her chair. "This will be taken care of right now." She was angry.

So nice, I made one person angry and gave one person a really bad day. I knew that as advocates we need to speak up, but I also wondered what she saw when she saw me. Couldn't she see, just by the fact that I approached her and spoke up about my needs that I would also speak up if they weren't met? Why did she pull down the heavens on herself?

.I don't know, but she did. 


Saturday, October 03, 2020

The Grimace

Do you know the face you make when your body is working really hard? The one that you show as you give one more push, one more bunch of energy to lift or push something. It's kind of a breathy grimace, you bear your teeth as if you are facing off a rabid dog or an unmasked shopper. It's a carnivorous look, even on the face of a vegetarian. I am familiar with it and luckily it's covered by my mask when I'm at the gym. I think otherwise I might scare skinny people who don't eat much but don't want to be eaten either.

Well, yesterday we were grocery shopping and, as is our habit, Joe goes first and I unload the basket onto the belt that takes it to the cash register. I had emptied out the bottom of the cart and had moved on to the upper basket. This one is harder for me because I have to reach farther and sometimes pick up things just with two fingers on the plastic bag. The whole process is something I like to do. 

For me, the chores that I like are the ones with obvious results. A pile of dirty dishes on the counter turns into clean dishes put away in the cupboard. A bunch of ingredients turns into a casserole, made with enough to freeze. And the cart is the same, a full cart becomes an empty cart. Then I move back and push the cart through the lane so that it can be loaded again when the bill is paid.

So back to the woman behind me. She watched me as I unloaded the cart, I was struggling a bit to keep up with the belt which whipped stuff away quicker than I could load it. When I got to the top basket there was something just out of my reach, I tried two or three times, to reach it and just couldn't. I looked up and saw that grimace on her face. He was using every bit of energy to just let me alone and just let me finish. She looked as if she was in some pain.

Finally, I reached the item and put it on the belt. Done.

I looked back at her and her face had relaxed, she said, "You don't know how hard it was for me to just let you get it. I could have so easily got it for you."

I said, "You don't know how glad I am that I was just let be and just let do the tasks that were set for my hands."

She smiled, "I divorced a man that helped me too much, it made me feel stupid and small, and the expectation of gratitude was overwhelming. I can't do that to someone else."

"Thanks," I said, "Isn't freedom wonderful."

She smiled but her eyes were bleeding tears.

Thursday, October 01, 2020

A Letter A Little Late

 I thought of you today.

It was first thing in the morning before the light of reality had seeped through the cracks in my consciousness. For that moment, just a single moment, I anticipated seeing you today. I reviewed the things I had to tell you. I love your big, loud, laugh, the one where you lived in the roar of your laughter. I had something funny to say. 


I remembered.

You died.

And I grieved you all over again.

So I thought I'd write to you. Because it's hours later and you are still with me. Even in companionable silence. You were there. I never knew that the last time I saw you would be the last time I saw you. I never said what I would have said had I known.

I would have said things differently than what I said at your funeral where I eulogized you. I said what the audience needed to hear. Shared memories that would have been universal, about how you were, and who you were, and the things about you that we'd all miss.

But, I miss you specifically. 

There were things that were uniquely ours.

And it's those things that I would have said to you.

We know each other, I refuse now to use the past tense, well enough for me to be assured that you know what I would have said. And it only occurs to me now, that you didn't know that our last goodbye would be our last goodbye and you never had the chance to take leave of me before you took leave of the world.

I think I know what you would have said.

I know absolutely what I would have wanted to hear.

And now I wonder, how closely those things would match.

Anyway, I wanted to say goodbye to you again because as the day presses on your presence fades behind things I have to do and things I want to do.

So, farewell again.