Tuesday, May 14, 2019

Surrounded

And suddenly a door opened and I was surrounded by children. Small children. Young enough to be curious. Young enough to have flexible minds. Young enough to see I was different. Young enough to connect with my eyes and see similarity.

The questions flew out of them. They had to fly by the discomfort of adults who worried about me, as if they thought the questions would somehow lead me to guess that I was different and be hurt by that. But the words flew quickly by objections.

"Why are you sitting on wheels?"

"Because I can't walk very well."

That answer simply satisfied.

"Is it hard to get around?"

"Sometimes, but it's really fun going downhill."

That made them smile as they imagined the scene.

"Does it hurt?" came a quiet question from the smallest child.

"It doesn't hurt to be in a wheelchair but sometimes it hurts when people stare."

She nodded. The reality of bullying starts very early.

Then, they flew away. Some waving, some calling 'bye'. Some just taking off home.

It was so nice to have a conversation about my disability and my wheelchair with people, many forget that children are 'people', who haven't already decided what the answer is, or should be.

Open minds.

Open hearts.

That's always the best way to enter into conversation, isn't it?

Friday, May 10, 2019

Words / Power / Healing

For about 12 years now, I've had a tiny little hole in my mind that led to a puncture in my heart and a crack in my soul. It's a wound that sometimes hurt. But only sometimes. There were days it was almost unbearable and days I didn't think about it at all. I had become resigned to the emptiness of those spaces in the trinity of my essence. Resigned. I didn't talk about it with anyone, except Joe, I didn't want people to know about the missing spaces of me, because then they'd know the cause, the blow that put that tiny hole in my mind.

Then, today, something happened.

Someone spoke to me. Someone I liked but didn't know well. And they said eleven words to me in context of talking about something I'd done. Just eleven words. I never thought I'd hear them. Those words traveled to that tiny hole in my mind and made their way to the puncture in my heart and the crack in my soul. In seconds the emptiness was gone.

Words are powerful things.

They are also shaped to fit into our lives and our consciousness in deeply intimate ways.

I imagine there are millions of people, like me, who had given up on waiting to hear the words they need to hear. To experience those words entering into their very selves and healing wounds left by callous or indifferent hands.

I'm a little bit changed.

Part of me, the part that would have me on edge for no particular reason, seems to have mellowed. I feel it already.

I'm completely changed.

My mind, my heart, my soul, feel differently, like they fit me a little bit better.

Those words.

Eleven of them.

Were magic.

I hope that any reading this who get what I'm saying, I'm sure it sounds like nonsense to some, I hope that you too will one day soon hear the words you need to hear.

And experience.

Healing

Thursday, May 09, 2019

No Toast

There's lots of ways ...

Today I was getting ready to start work when Joe brought me breakfast. Now, before I go, on, please understand that I really appreciate him doing this and what I'm about to say doesn't take away from that. Anyway he brought me my breakfast and when I looked down there were the two eggs, some veggies sausages but no toast. I eat eggs on toast every morning of my life. I said, "There's no toast!" Joe immediately apologized and I interrupted him to say, "Is this your way of calling me fat?"

I said this as a joke.

I still mean it as a joke.

Joe is a wonderful man, he is neither a bully or a name-caller.

BUT ...

It got me thinking about ...

... the time that I heard a staff, impatient, snap at a young boy with Down Syndrome, who was attempting, unsuccessfully, to put on his shoes. This is a skill he has but it's always done slowly and if there are any distractions, he needs to start again. The staff said, shortly, "Let me just do it," and took the shoe from the boy's hands and shoved them on his feet.

... isn't that just another way of calling someone the 'r-word?'

... and the time I was in a store, shopping, and two young black teenagers came into the place. They were immediately followed by the security officers, who had ignored me and, unsurprisingly all the other white shoppers. The girls knew that they had been followed and were under scrutiny that was zeroed in on just them.

... isn't that just another way of calling someone the 'n-word?'

... and finally the time when I was at a meeting and the chair of the meeting called on men who raised their hands more than twice as many times as he called a on women who had similarly indicated a desire to speak. They pretended not to mind and the chair pretended that he treated people equally.

... isn't that just another way of calling someone the 'b-word?'

Maybe name calling isn't limited to speech, maybe the most serious way we denigrate someone is with the words we speak through our behaviour. It is said that behaviour is communication and if it is, some of us need to shut up.

Or, even better, learn a new vocabulary.

Wednesday, May 08, 2019

Not So Much

I saw them at the mall.

So did everyone else.

He was tall and strong. His tight tee shirt emphasized his lean, strong, torso. He obviously took care of himself, he obviously thought that mattered. He obviously wanted others to notice. His tight tee, stretched across his muscular chest and his arms bulging against the restraint of his shirt, told us that.

Beside him and a little behind.

Walked a man with a disability.

Physical and intellectual disabilities in fact. He walked in such a way that his knees constantly got in each other's way. But with will and determination he was fighting to keep up with his staff. Unlike his staff he did not wear a tight tee shirt, he wore, instead, a bulky coat and jeans. He was sweating with the effort of keeping up with a staff who walked just a little bit too fast.

He was on his phone.

The whole time I saw them.

Never looking up.

Never looking back.

Not once did he speak to the man with him - the man behind him.

The man walking behind him.

The man struggling to keep up.

At one point he laughs at something he sees on his phone.

He is connected. He is wired in to his friends. He has a life beyond where he is now, a life different from what he's doing now. It's clear that his world is much bigger than this place. It's clear that those relationships are much more important than the man, walking a little too fast, sweating with the effort, who walked behind him.

He looked so alone.

Walking quickly behind a man in a tight tee.

He looked so lost.

Following steps taken too quickly.

Everyone watching had a choice in what they thought about what they saw. Did they see a staff who didn't care. Or did they see a man not worth caring about? That this is a legitimate question frightens me, but I know it is.

He cares about himself, he shows that. His body is toned and there's a gym somewhere who's equipment is being worn out by this man. I guess he think that's important.

His body is strong.

His heart, not so much.

Not so much at all.

Tuesday, May 07, 2019

Maybe

I sat waiting, for a long time, outside the accessible toilet. The green light had indicated that it was in use and I had tested the door to see if it was locked. It was. Time passes slowly when you are desperate to pee. When the door opens, a couple stumbles out. They do not have an obvious disability and this makes them both talk quickly, telling the same story. She had been in a car accident recently and now has seizures. He supports her when they happen, he loves her, he'll do anything for her. They both tell me this in a weirdly parallel but wildly different dialogue. They needed the space for her to get changed and to get fully back into herself. They were really sorry it took so long, they knew that I'd been waiting.

Here's the thing. I didn't care about waiting. I don't like it, but I am, and this may surprise you, aware that I'm not the only person with needs in this world. They were finally through the door and the fellow leans over to hold the door open. He's reaching as far as he can, the door is heavy, it's a struggle for him to do this. And he doesn't need to. I'm right beside the door opener button. I tell him it's okay as I reach for the button.

"No," he said, "I want to help you. Nobody ever helps us. No one wants to put the work in to understand us. When we came out and saw you I thought you'd be angry and you weren't you understand what we are going through. That's help. That's big help. I want to help you back."

Mostly when people hold doors that door openers open, it annoys me a little bit but this time I just said 'thanks, I appreciate it.'

He smiled at me, She smiled at me. It was like we were all having a moment outside a bathroom door.

I had never thought that 'not being mad' was an act of understanding.

But maybe it is.

Maybe it is.

Saturday, May 04, 2019

Back

I'm back.

When I fell ill we had several trips booked, airplane tickets bought, hotel rooms sorted. We have never been so organized. It felt good, until Joe, while I lay in a hospital bed, had to cancel everything. It was brutal. So I've not been working at anything but my regular full time job for several months now. It's been good to get a rest but difficult to feel good about.

But.

I kept my most recent gig. It was to work with self advocates as they came together to form a self advocacy group. I love this kind of work. I really wanted to be able to do it.

We arrived early and got set up. Joe and I went over our roles and then we waited for the participants to arrive. And when they did, I turned to Joe and said, "This is going to be fun!"

And it was.

The group had energy, it had ideas - and really big ones, they were not afraid to take a stance or to direct me. After one of the items that was brought up, I thought to myself, "This is really deep shit!" I wanted to say that to them, to acknowledge the depth of thought involved in their discussion.

So I said, "Does anyone here mind if I swear?" Now I personally think that 'shit' is one of the stinkiest things but also one of the blandest swear words. But I asked. Three or four people in the group looked at me and without hesitation said, "No, don't swear."

And I didn't.

Because that's what self advocacy is, speaking up and letting people know what boundaries they don't want crossed, what language they don't want used ...

I think this group has a really good chance of doing really big things.

Gratitude isn't a big enough word for me to express my happiness at being able to be there, to be part of this, and to make it through the day feeling good and strong.

I'm back.

Thursday, May 02, 2019

Good Thing or Bad Thing

I had just gotten myself positioned at the cable machine to do punches, straight ahead, upwards, downwards. I'd increased the weights and had tried a couple of punches to see how I'd do, it was doable but work. I'd been so focused that I didn't notice him standing there, waiting for me to notice him. I stopped, looked up at him and said hello.

He mentioned that it was nice to see me back and wondered where I'd been over the last many weeks. I told him that I'd been very sick and in the hospital and was only now trying to get back to the routine, I had, I emphasized, been to the gym a couple of times since but had not seen him there.

He asked about my illness and recovery and we spoke for a few minutes. I told him that the worst thing about the gym was, when you came back, you could tell exactly how much strength you'd lost. I'd had to drop weights and resistance on everything I was doing. It would take a while to get it all back.

"You are an inspiration," he said.

I blubbered something about not feeling like one.

"Well, you are," he said and then was on his way.

I tried to figure out why I wasn't offended. Like all of you I don't like inspiration porn, or being objectified into a one dimensional disabled wonder. Then I realized that he wasn't using the word in relationship to my disability but in regards to my will to fight back after an illness. I don't know what his history is, or where he comes from, or who he's known, I don't know what the word 'inspiration' means in his own personal vocabulary.

I am inspired by people sometimes but have become shy of saying the word. But inspiration isn't a bad thing, inspiring people do actually exist.

It's weird because it took me 20 minutes to figure out that I wasn't offended and another 10 to figure out that it was a compliment.

Being disabled means that sometimes I complicate the uncomplicated and over think something that doesn't require any thought at all.

Any of you find yourselves spending too much time figuring out what's the right was to feel about things?

Tuesday, April 30, 2019

A Good Sleep

"So, I heard you'd been really sick," she said, standing at my door.

My door at work is almost always open. I like to be accessible, I like people to feel they can pop in and say 'hi' or come in for a chat when I'm able to. I also like the feel of this place. We offer therapy here to people with disabilities who have experienced violence, abuse, trauma or the inestimable pain of having been institutionalized. The people who come are so incredibly brave. They come to heal, they come to reestablish a relationship with joy, they come to make their lives better. They also come knowing that the work will be hard, that they will need to dig deep to find the emotional resources they need, they know that to make the next part of their journey easier they may have to walk again through pain.

I'm in awe of them.

Just a few feet from my office door we have a small waiting room. Sometimes people with disabilities gather there and simply talk with one another. They support one another, laugh with one another, and, in an odd way, manifest their healing in their interactions.

I'm in awe of them.

"Yes, I've been very sick," I said.

"You look, you look, you look, good now," she said and then turned and left. I was grateful that she'd seen health in me, when you've been sick this is good to hear.

But she returned.

"I didn't say it right," she said, "My mom said to me after I was in therapy for awhile that it looked, for the first time in a long time, like I'd had a good sleep. And I had, for the first time in a long time."

She paused, blinked away tears.

"That's what it looks like for you, it look like you've had a good sleep. You were sick, but it looks like you rested. That looks good."

I looked in the mirror later and she was right, it looked like I'd had a good sleep. It took illness to knock me into bed, but once there, I rested.

I want, for the rest of my life, to always look like I've had a good sleep.

I wish for everyone that comes through the door to therapy that they will always be able to have a good sleep, a rest.

Sunday, April 28, 2019

Lucky to be Free?

Yep.

Had all sorts of plans for today.

Got up and didn't want to do them.

Wanted to watch T.V.

Wanted to surf the web.

Wanted to make a spaghetti sauce.

Wanted to spend time with tea and a book.

Wanted to spend the day in my housecoat.

Planned to go to the gym.

Planned to go to the mall.

Planned to pick up a book waiting for me at the store.

Planned to be active in my community.

Didn't want to do it.

So I didn't.

And it's awful to realize.

That I can make this decision.

Solely because I don't have a staff.

I don't have a plan.

I don't have an outing checklist.

Sometimes living freely in the community.

Is shown best by simply staying at home.

And saying 'to hell with plans.'

It shouldn't be luck that I'm free.

But it is.

And that fact scares me.

Saturday, April 27, 2019

The Reason Why

He was sitting, at a table in a busy food court, looking very, very, alone. He kept an eye on his mom who was in the line up to pick up some lunch for them. Across from him were a table where sat two elderly couples. They had noticed that he had Down Syndrome. They were staring at him. Pointing at him Talking about him. They knew he could hear them. They didn't care.

I have marinated in the bullshit behaviour of others for my whole life. A fat kid, a fat adult, a fat elderly wheelchair user. I have been looked at, judged, examined and vilified my whole life. People made the assumption that they could speak to me about me, speak to others about me, freely, my body has always been, in their minds, permission.

It never has been.

As an adult now I confront those who stare, and I have a look that silences those whose lives are so empty that they need to talk about the body of a stranger. I can handle myself. I can leave without the heat of the judgement leaving burns on my skin. But it wasn't always so. When I was young, it hurt so much, words fail me.

And as an adult, I can use what I know. I can take action. I grabbed the wheels of my chair and pushed over. I came to a stop right between the table of the two couples and that of the boy alone. I parked there. They would have needed to stand to continue to feast their eyes on his difference.

They had me. They had bigger difference to see.

But I sat and stared at them.

I said nothing.

I stared at them and slowly shook my head.

In moments, their trays were picked up and they were gone. And he was safe. I rolled away.

His mother was returning to him with lunch and he was reaching up to her. She set the lunch down and hugged him. She maybe wondered why he needed it so badly right then. But she was a good mom, it only mattered that he needed her love, the reason why could wait.

Friday, April 26, 2019

Nice Unaware Untrained Unthinking Love

I am, when advocating for things like the right to pee, almost always told that prejudice, specifically ableism and disphobia, do not exist. I'm not sure if it's because they think that non disabled people are too nice to be prejudice or if we are simply not worthy of the bother of prejudice. But, whatever it is, I'm constantly told that:

1) We just didn't think about accessibility when we made the change.

                      - well then ... think

2) Sometimes when you aren't disabled you don't notice what access needs are.

                      - well then ... notice

3) We just need more training so that we can become more aware.

                       - being 'aware' isn't the same as been 'awoke'

4) We LOVE our disabled customers.

                        - get me a barf bag, I don't want your love, I want equal access

So non disabled people don't have a prejudiced bone in their body when it comes to us. Not one. My lived experience at the blunt end of interactions with the world around me and the people who inhabit it, notwithstanding, tell me otherwise.

But the only people who I have found that can hear a conversation that has the words ableism and disphobia in it are others who are within the movement.

"Forgive them for they know not what they do."

OK.

But what if they do?

What if they do.

Thursday, April 25, 2019

Fight

An accessible toilet has been made inaccessible.

The door used to swing both ways, which is more important than you can imagine when you need access to the loo. I used this toilet all the time, I'd swing the door out, then back in beside the toilet, then swing the door closed. Easy peasy. Then, I went and found that the door had been made inaccessible because they put a governor on it so that it could not longer swing outwards, only inwards. This effectively makes an accessible toilet inaccessible to wheelchair users.

I discovered this when I had to pee. I arrived, fully confident of a toilet that I could access, to find that I could not use it. The nearest toilet was down an elevator, for which there is always a wait and then a long push down a long corridor. I navigated all this and then had to wait outside the other accessible toilet for it to become free. Thank heavens I have a bladder that can hold more than a super soaker.

I mentioned this to someone.

They asked what I was going to do.

I said that I've already got a call in to the property manager.

"You look like you are ready to pick a fight."

I thought about that. I've been accused of that before. I need to say that in the conversation I'm recounting, it wasn't an accusation but a friendly joke. But even so, hearing that reminded me of the other times it's been said to me, often in a less friendly manner. Like I'm rolling around looking for offense. (Don't have to look far, ever.)

But I thought about it.

No.

They picked a fight with me.

They made an accessible space inaccessible.

They threw down the gauntlet.

They initiated.

To respond is not to pick a fight but to engage in a fight where the first punch has already been thrown.

We need to see provocation for what it is. We need to see that our response is often second to the action of another to deny access, to make unwelcome, to exclude.

So bring it on. They picked the fight. Now they have to deal with who they picked it with.

Sunday, April 21, 2019

Easter

Easter.

For awhile there, especially after first admitted to the hospital, I wondered if I'd be here right now. I wondered, further, if I wanted to be here. I was tired. I was sick. I thought maybe I was done.

Then.

Every time Joe came into the room.

I knew I wasn't finished.

Every time Marissa and the girls came to visit.

I knew I wasn't finished.

Every time my mind wandered to the work I've yet to do.

I knew I wasn't finished.

But.

It's easy to give up.

Easy.

Or so I thought.

But I discovered that I am firmly tethered to the ground.

Firmly attached to the life I'm living.

Firmly connected through the past to the present and future.

Yesterday I had a normal day. I went to the gym. I went to the movies. I came home and helped prepare dinner. Just an ordinary day.

A week ago I would not have had the energy to do that.

But I had a normal day.

And I'm grateful.

So today, Joe and I are heading down to the city to go to church. Our church. We are both feeling thankful. We are both feeling hopeful.

We are both feeling Easter.

And for those of you who celebrate this feast, I wish that same feeling for you and your families however they are constructed.

Saturday, April 20, 2019

Signs

I've said it myself, many times. So please don't take offense when I enter this into discussion. I used to imagine, when I first became a wheelchair user, what kind of message I needed on the back of my chair so as not to be grabbed or forced to receive assistance. The ideas funny, the execution, never happened. I don't want a sign on the back of my chair. I'm a private citizen, not a billboard. And I notice when I bring up the topic of being assaulted, being grabbed, being manipulated, people come up with ideas for signs for the back of my chair. I get it I do.

Or I did get it.

I don't now.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

When that man came at me from behind. He startled me. He forced his help on me. HE GRABBED ME! In full view of lots and lots of people. I assure you that if I saw someone coming up behind another person with the intent to grab, I'd call out. I'd yell "STOP!" I think others would too.

But no one did.

In fact they smiled at him.

Saw him as generous.

Saw my angry outburst as 'the problem.'

And when we come to discuss it, out comes our sense of humour, our comes our suggestions for what I should do differently to stop this.

I SHOULDN'T HAVE TO DO ANYTHING DIFFERENTLY TO BE LEFT ALONE FREE OF ASSAULT!!

It's not because what my wheelchair is or is not wearing!!

But ...

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

In the car afterwards Joe and I did exactly what many readers did. Joke about what I could put on the back of my chair to stop people.

But.

Realization.

I don't want to wear a sign.

I want the usual signs of respect that non disabled people take for granted.

You know, like not being assaulted, in full view of many, in daylight hours, outside a grocery store.

Friday, April 19, 2019

Parking Lot Realization

You know this story.

But I need to tell it again anyways.

You see I realized something.

We parked at the grocery store and I got out. Joe was gathering bags and lists and stuff and I headed off to the store myself. I got to the curb in front of the store, paused, and began to push up. It's difficult for the first few seconds because of the steepness of the grade and because of the bumps that need getting over. But I was doing it. He came at me from straight behind me. I didn't see him. There were lots of people going into the store, lots of people around. Then I felt him. My chair was grabbed, he started pushing. Not a word had been said. I screamed, I don't usually scream, "Stop." Now everyone was watching. "LEAVE ME ALONE, DON'T TOUCH ME!!!" He started to stammer about helping, "LEAVE ME ALONE!" People looked at me as if I was rabid, people looked at him with a 'poor you' look. I pushed myself into the store.

Joe, who had heard the commotion, came and started to apologize for not being able to stop him. I was left feeling like an asshole, someone who made a scene, primarily because people were glaring at me. Glaring. And then it hit me.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Now that I've calmed down and looked at my reaction. I think any other person who had someone sneak up from behind and grab them would have reacted fairly similarly. The only difference being that no one would dare to do this is broad daylight. I believe that if it had happened to someone else, the police would have been called, and people would have offered some kind of comfort.

Assaulting disabled people is acceptable.

Disabled people reacting to assault is not.

Under the guise of helping we can be grabbed, pushed, forced; we can be stripped, force fed, confined; we can have our bodies touched, we can have our voices put in restraint, we can have our protests met with punishment.

Helping.

Just helping.

Assaulting disable people is acceptable.

Disabled people reacting to assault is not.

Thursday, April 18, 2019

A Voice, A Visit

Yesterday morning, I awoke, could feel Joe stirring beside me, so I wished him a good morning. We both paused. My voice was back. I'm almost crying at the writing of this. You see I came out of the hospital with a new voice. A weak, soft voice, full of holes, the kind of voice that comes from sickness and ill health, it was a voice with no strength, no power. It has a hospital voice suited to choosing jello or ice cream to nurses straining to hear.

But yesterday morning, my voice, my real voice, came for a visit. I sounded strong, my voice had power and intonation and seemed desperate to tell a story. It was a remarkable difference. I had wondered if it had gone forever. I wondered if I was to be forever mourning its loss.

But no, it was resting too.

It didn't make the whole day. It lasted until early afternoon. Which I thought was a good long time for a visit. It's back again this morning.

It's early but I want to rush out and try it on someone.

But I won't.

I'll be able to use it at work.

There are so many things that illness takes from you. There are so many things lost. But some come back.

Thank heaven's one of those has been my voice.

It's not a pretty voice, or a classy voice, but it's been a strong voice when I've needed one.

And again this morning, it's home.

Wednesday, April 10, 2019

Way It Should Be

We've been at the mall a little more these days. It's one of the few places where I can get some exercise without pushing myself to hard. When we go on weekends, we often stop and have lunch in the food court. I pretty much always go to the same place. The food is good. There are lots of vegetarian options. The people who work their are nice.

So what usually happens is that Joe goes to order his food at one of the other places, he has several favourites, and then when I see him in line, having chosen where to go for lunch. I go to my place. We time it so that I order and pay and then Joe goes to pick it up. It's a routine now, they know both of us. It works well.

A couple of visits ago, Joe decided to eat at the same place so we placed our order with the fellow who runs the place, the same guy I usually order from and give my money to. He looked at the two of us and asked, "Are you brothers?"

Joe and I look nothing alike. Even so we often get this question. I think people see that there is a relationship, a bond, between us and then they try to figure out what that might be. For some reason, they never, ever, think that we are married, or even dating.

The question threw me. I like this place and I like the food. But I wasn't sure what their attitude would be if they had to contend with the actual nature of our relationship. I didn't have time to decide anything. Joe answered quickly, "Hell no, we aren't brothers, we're married, he's my husband."

There was a moment of shock on the faces of those behind the counter and those in the line behind us. It was like they reacted in several ways.

Oh, they're gay.

Oh, the fat disabled gay is in a romantic sexual relationship.

Oh, I don't want to picture that.

But. And here's the 'but' that mattered. Nothing changed. I've been back since. No change. Same welcome. Same sense of ease.

That's the way it should be.

But often isn't.

Tuesday, April 09, 2019

Need

I need so much more from people right now.

One of those things is something I've written about a lot.

I need to be let alone, to be allowed to just get on with my day, to be relieved of the burden of inspiration, to be just another anonymous person in the community. I need to be let alone.

I'm tired.

All the time.

Tired.

The doctor, my blood tests in his hand, assures me that I'm on the right track, that I'm getting better, but that it will be slow. My tiredness isn't going to go away any time soon.

So.

I'm tired.

Just being wears me out.

Doing is another thing entirely.

So.

I'm pushing from the car park to the mall entrance. At the edge of the parking lot the sidewalk slopes upwards to the door. Only a couple weeks ago I pushed up this with no effort at all. Flew up. But now, it's work. I can do it. But it's work.

I'm pushing up, the effort is showing.

My heard is glad, I know I'm going to make it.

Now, suddenly, I'm fighting off help.

DON'T TAKE THIS FROM ME!!!

I NEED THIS!!!

I'm called rude.

I'm not.

I'm just tired.

And I want to get better.

I don't have time to caretake the feelings of those who need me for their own purposes.

I don't want to speak sharply.

But what other way do I have to communicate that in this situation, MY NEED MATTERS MORE.

I am not your teacher.

I am not your random act of kindness.

I am not her for you.

I made it to the top. Victorious.

This was something I had to do to remind myself that I am coming back to me. I'm coming back to strength. I'm coming back to independence. I'm coming back.

Back.

Monday, April 08, 2019

An Odd Conversation

The oddest conversation.

I am sitting in my office at work and a fellow with an intellectual disability pops in and says that he'd heard that I'd been sick. I told him that I had been. He said that he'd heard that I'd been very sick. I told him that was true that I had indeed been very sick. He told me that he was happy that I was well enough to be back at work. I thanked him. Then he said, and I quote, "Just remember, getting sick isn't your fault, everyone gets sick." I asked him what he meant by that, "All people get sick, not just disabled people, all people." I nodded and he left my office. Message delivered.

I hadn't actually thought that getting sick was my fault. Never crossed my mind once. Not once. But since that discussion I've discovered that not everyone felt that way. Any number of people were convinced that my illness had something to do with my disability. In fact, I'm afraid to say that I've discovered most people had made a connection when none existed. In discovering this, I also found that, in some way, people were making this the result of my disability and that in there somewhere was a personal kind of blame.

Not everything that happens to me happens to me because I have a disability. Not everything is related to my wheelchair or my difficulty with walking. Not everything about me has "dis-" preceding it. And that includes my vulnerability to illnesses. I do not believe that bacteria have an address book listing those people who are 'just' targets of their violence.

Yes, I got sick.

Yes, it was serious.

No, it wasn't because of my disability.

No, it wasn't my fault.

I shouldn't have to say any of these things. But I do, and will over and over again. I have spent my entire working life, my entire life as a disabled person try to establish the uniqueness of the disability experience as it's encapsulated within the commonality of the human experience.

All people get sick.

It was an odd conversation with an important message.

I hope to see him soon and thank him.

He taught me.




Saturday, April 06, 2019

Maybe Too Much Information

If on the odd chance you have the opportunity to walk by the bedroom of a couple that's been together for over 40 years and you hear gulps of pleasure emanating from the room. 8 out of ten times on the other side of the door, they're scratching each other's backs. Yeah. Man. Sex is awesome but that itch that's just out of reach - priceless.

Stop here if you are afraid of too much information.

I just want to make a point.

A lot of what I've gone through has been painful. My body hurts as it heals.

That pain.

Constant.

The body.

It's cause.

Or that's how you see it.

But last night in bed, Joe scratched my back and got that sweet sweet spot. My whole body tingled with pleasure.

It felt good.

To feel pleasure.

In my body.

To be reminded.

Of the gifts it can give.

I fell asleep with the hope that the morning bring more pleasure and less pain. It's nice to think that way, like the whole thing might be possible.

Friday, April 05, 2019

The Context of Wonderful

Something quite wonderful happened yesterday. To understand why it was so wonderful, you'll need some context. So here goes ...

Because I have a history of making bad, even stupid, decisions about my health, my initial fall and loss of strength didn't trigger an immediate trip to the hospital. No, that happened on a Saturday and on Monday I was scheduled to do a four day lecture series. I decided that I'd go do that and then deal with whatever went wrong. Somehow, in my mind, the possibility of it getting worse never crossed my mind, I had it that it would go on hold, I'd do what I needed to do, and then I'd get to the health stuff.

Well.

I made it through two days of training. On the morning of the third, I knew I was worse, much worse. The night had not been kind and now I knew I was in trouble. I told Joe that I couldn't do it, we'd have to cancel and go home. I hated doing it, I hated myself for doing it, but I knew I had to do it. The audience had been a nice one, lovely people, paying attention, and asking good questions. I felt I had abandoned and betrayed them. But. I was desperately sick.

During hospitalization I had to cancel a number of trips. It was clear that I had been hit hard by this infection, that I had to rest and take time to get better. It all weighed on me, almost to the point of crushing my spirit. It was like one part of my brain was saying, 'good boy, you are making all the right decisions and taking care of your health and your future,' and another part of my brain was saying, 'you failed, you failed all these people, you let everyone down, who will ever trust you again?"

Then I realized I was fighting a double battle, one for my physical health, one for my mental health. I needed to be taking care of both. And, again, I think I was managing that. Look, I'm back to blogging.

But then yesterday I received an email.

It was from someone who had been at the four day training that had suddenly become a two day event. She was there when I fell ill. She just said that she, and others, had been thinking about me and were hoping that I was doing well. Then she said that she had enjoyed the training, that she had learned from it and that it had been valuable to her. Even just the two days. She'd like to hear me again.

I can't tell you how much this cheered my spirits! I felt that because I didn't make it all the way through I had wasted their time, that I hadn't given them anything. But this was the darkness talking. Here she was saying that what I had done, even in just two days, had mattered. That I mattered.

I don't know what inspired her to write me that note. But it mattered. She mattered.

I wrote he back and told her that she must be the nicest person alive.

She had been there when illness took me from doing what I loved. I had imagined how people felt being abandoned by their instructor half way through a course. I had been wrong.

I got up this morning feeling a little brighter, a little lighter, a little more like the battle is worth it.

Onward.

Thursday, April 04, 2019

For a Day or Two

Spotless.

Uncluttered.

Organized.

I came through the door and almost didn't recognize the place. Joe had been busy cleaning and tidying and it really showed. The place hasn't been like this since, well, never. We don't live like this. We're clean but we're untidy. Books piled on the couch. Papers littering the front room. Dog toys and bits of dog toys hiding just under the lip of the chairs. We live here and it shows. But today it looked like we'd walked into a display unit and that a salesman would come soon to talk us into a time share.

Once in, I sat down in my chair and immediately pushed the button that raised my feet up and I settled in. I asked Joe if he wanted to watch something on television for a few minutes. He was frantic. "No," he said, "I've vacuumed the floors, now I have to wash them, then I have to change the sheets on the bed and tidy up the bedroom." I looked at the floors, they were already spotless. But, in seconds he was in there with the mop washing every square inch.

"I'm making the bed in case you need to be see in there rather than out here," he explained.

When he was finally done I took a look and the bedroom looked amazing. Everything had been organized and dusted and arranged for public view. "WOW". I sad and could see from Joe's face that this was the right response.

So what was going on?

We were going to have our first visit by the home care nurse who was coming to ensure that the healing was progressing. That I was fighting off the infection. That I was getting well.

In Joe's mind, he was going to get graded on a scale that veered from 'loving spouse' to 'slovenly attendant,' and he was determined to pass the test.

The nurse ended up being almost 4 hours late, but she came in and worked with me in the front room, I almost wanted to invite her to glance into the bedroom because it looked so awesome, but I figured that would be weird.

She pronounced me 'on the road to recovery.'

I am now officially on notice.

I'm getting better.

And I live in a very, very, clean and tidy home. (For a day or two at least.)

Wednesday, April 03, 2019

What Happened: In Brief

So.

It's been a rough ride.

I apologize for simply disappearing from this blog.

I've heard from some of you, thank you for your concern.

You were right to be concerned.

I went to bed one night feeling good, feeling strong, having had a good workout and looking forward to the next day.

I got up in the morning in a vastly and impossibly weakened state.

Then.

I fell on the floor.

It's all a bit of a blur after that.

I made some bad decisions.

I made some good decisions.

I presented myself to the hospital and about 12 minutes after seeing the doctor I was admitted with an IV bad dripping into my arm.

So much happened there.

So many stories.

No energy to tell them.

Once out of the hospital, I'm going to clinics and having nurses come to my house.

More stories.

Still no energy.

I'm writing this today because I feel a bump of energy this morning and I wanted to use that to update you here.

So many of you have followed this blog since it started.

I wanted you to know.

I do want to come back to more regular blogging. But give me a little time yet. I'm still fighting to get through the days. My health is returning more quickly than my strength or my energy.

Thanks for your patience.

Sunday, February 24, 2019

Oh Well

The noise caught her attention first. She wasn't startled by it, not at all, but it did call for her to look over towards the door. We were entering the mall through a different entrance than we normally use. As we went through the  center set of doors, I made the comment that every entrance should have electronic doors. Joe said, "Oh, this one has it too," and went over to push a button on the big door to our right.

And then all hell broke loose.

There was an explosion of sound.

Gears grinding. Metal popping. Blasts and banging.

The door didn't open at the end of all that.

We were stopped still, afraid that something was going to explode out of the machinery. Seriously, it sounded dangerous. It stopped. Joe looked at me and said, "I think we'll use this door, and we went through.  As we did so the staff who had initially had her attention pulled by the sound was long gone.

Only later did I realize that her boredom, after her initial attention, wasn't just about her job but about the situation as well. She had known the door didn't work, had heard the sounds before, and they were meaningless to her.

That's a big part of the problem that we have as disabled people. The issues that have a dramatic impact on our lives are meaningless to those without disabilities.

Who cares that the door doesn't open when I can easily open and enter myself?

Who cares if the cut curbs are in bad repair when I can easily step over rough patches of pavement?

Who cares if the options are reduced for disabled people when they are never reduced for me?

The things that impact our lives as disabled people seem frivolous to the point of meaninglessness. No one in that store has done anything about the door, and they probably all know about it. There is no sign of intervention. No sign of repairs under way. No suggestion that other doors be used. Nothing.

That's left to me.

That's left to some other disabled person.

That's left to some family member or support person who needs the door to assist with entry for their child or the person they serve.

It's already work enough to be different in a world built for exclusion. A world where the word 'modifications' means that a gift has been given, that the 'typical' has been 'adapted.' Shouldn't access be the norm rather than result from the norm being modified?

Oh, well.

I'll call on Monday.

Saturday, February 23, 2019

And I Wonder

We were waiting to go into a clinic where I've gotten an appointment to see a nurse. There are a number of people waiting and we'd had a difficult time finding a place for me to park my chair. I'm very wary of 'sticking out' or 'being in people's way,' so Joe and I have to move a chair out for me to get in, sounds simple, often isn't. But I'm there. Waiting.

A fellow comes in, like me a wheelchair user. He has no difficulty in sticking out and just backs up against an existing chair. He is a talker and he starts to chat with Joe who is sitting right beside me. I make a few attempts to join into a conversation that I found interesting and was firmly rebuffed. Nothing was said but it was as if I was nothing and nowhere and he wouldn't even look at me. Not a glance.

He talks about his wife and then describes the accident which led to him becoming a wheelchair user and they talk. I give up, pull out my phone, and start to play the game I've just downloaded and am fascinated with. I get it. I'm not wanted in the conversation.

And I wonder.

Why do we do that? Why do we do to each other what other people do to us? Why do we take the worst of how we are treated and instead of rejecting it instead of fighting against it, why do we do that to each other?

I am on line. A woman with a disability has just written a post about something related to her disability and her experience. She never claimed that what she was saying applied to anyone but herself. Her post described her lived experience and then outlined what she took from that experience. It was a good post.

But then, in the comments, oh my. People were out for blood. They attacked her. They accused her of her experience not being real. They accused her of taking the wrong things from her own story. They said that her reality wasn't their reality. They accused her of trying to speak for others. It was cruel. There was a level of meanness as people jockeyed for top spot on the heap. What's up? This is us!

The next day she had deleted her post.

She had been silenced.

The people commenting were also, primarily, women with disabilities. A few men thrown in there as well, and while some thanked her for her honesty and insight. The attackers outnumbered them at least 4 ro 1.

And I wonder.

Why do we do that? Why do we, who have been silenced, we whose voices have often not been heard, strike down one of our own and disallow her from speaking her own truth, her own reality and call into question her own ability to learn from her life. This is us!

A boy with an intellectual and physical disability sits listless in his chair. It's a bright green chair and he's wearing a striped tee shirt of a matching colour. He is maybe 6. He looks bored. He looks lost. He looks alone. He sees me rolling towards him and his had lifts and waves, there is a brief smile. I wave back. He is with his parents. His mother and father are behind him. They have stopped to talk with another couple. Their conversation swirls over his head and to the back of him. Even if he twisted he would not have been able to see what was going on.

I push by. They are talking about inclusion! They are talking about how the school board does a terrible job with inclusion. They talk about how their son is rarely really included. They do this behind his wheelchair, out of his sight, they leave him alone and lonely on the edge of the group, looking out.

And I wonder.

Why do we do that? Why do we fight for an inclusion that we don't practice ourselves? Why do we developing ideas and ideologies about disability and see them as things that others should do? Why do we so easily leave out those who we love the most? Come on. This is us!

This is us.

THIS IS US!

and we know better

Friday, February 22, 2019

All of Us: A Gay Man's Response to Jussie Smollett

I do not apologize for believing Jussie Smollett.

There is a growing chorus of people who, delighted at the idea that his beating and abuse was faked, are taking control of the discussion of racism and homophobia. They feel they are in the driver's seat now, as if they haven't always been, and are making it clear that claims of institutional and confrontative  prejudice doesn't exist, or if it does, it's minor and even then, exaggerated.

They laugh at those of us who had hearts that hurt at hearing Mr. Smollett's story. The talk about 'confirmation bias' as if we are always sniffing around looking behind shrubs and trees to find the rare and brittle branches of bigotry. While they exult in this moment I wonder if any of them will wonder why I believed Jessie Smollett.

If we were so easily tricked, why would that be? We are people who hang up the phone when robocalls warn that the police will come if we don't pay up on fictitious taxes. We are people who know better when fast talking cons try to sell us our own shortcomings. If we were tricked why were we tricked.

"Because you want to believe in racism and homophobia so badly that anything that confirms your world view you scoop up like baked brie!" is the suggestion.

Racism.

Homophobia.

Those aren't things I believe in. Those aren't abstract unproven hypotheses. They are concrete and deeply embedded historical realities.

Why would I believe Jussie Smollett?

Why would I believe that 'outrageous' story?

Because I've lived it.

Not all of it.

I am a white, gay, disabled man.

I only speak to what I know. Homophobia exists.

I shook hands with prejudice a long time ago. I grew up and before I knew who I was I knew who I was was wrong. Do you realize that people have to come out because they've been locked in? We hear the words said around us. "Fag!" "Sissy!" "Gearbox!" "Pansy!" We hear them as children and innately we know what those words mean, and we know that we need to find a shady spot to hide ourselves in. Shame makes a good blanket under which we hurt ourselves. We are our own first bullies. We are intimately connected with violence. We use it to punish our difference.

Leaving 'Buddies' a bar in Toronto years ago required walking a few steps down an alley. It was terrifying to enter and terrifying to leave. People were beaten around there. People were hospitalized around there. And no one told. Silence was the only option when discovery would cost jobs, and family, and even lives.

It wasn't hard for me to believe Jussie.

Marching in an early pride parade, long before corporate sponsors, long before pride was a product, Joe and I walked side by side. A rock is picked up. It whizzes by my face and hits Joe on the shoulder. No damage was done, except it's odd that its that same shoulder that Joe has trouble with to this very day.

It wasn't hard for me to believe Jussie.

Crossing the English channel in the Volkswagen beetle we meet a young black woman. She is bright and funny and told one helluva story. When the boat docked we invited her to ride with us to London, she took us up on the offer. We talked and laughed on the drive. We watched night fall and when we arrived in London we started looking for places to stay. We had some sort of student guide to where travelers could get good rooms cheaply.

When Joe and I went into get us a room, we mentioned that we were traveling with a woman who also needed a room. Rooms were available, the price was right, and we were signing the register when she came into the lobby. Suddenly there were no rooms. They made it clear that they hadn't realized that she was, 'you know.' This happened at every stop. At one point, three refusals later, she became really upset and yelled at the manager. Called him a racist pig. He, in turn, called the police. They arrived instantly, the colour of her skin being a magnifier of the concern. The hotel guy over described what happened, said that he wasn't racist but what was he to do - being the manager of a place with disappearing rooms, it's just so hard.

We were brought to the police station.

We were let go.

She was held.

We didn't get a room for that night. We parked outside the station and waited til morning. She was let out. She looked like a different woman. She looked defeated.

We drove her in silence to where she was to catch a train.

Said goodbye.

And she was gone.

It wasn't hard for me to believe Jussie.

I don't apologize for believing a story I've heard before, a story I've lived before.

I have no claims to understanding the experience of racism, I have observed it, I know it's real, but that is not my story to tell or the pulpit on which I choose to stand.

I do have claims to understanding the experience of homophobia, heterosexism, disphobia, and ableism. I get those.

I don't believe in them.

They are facts.

And until they are not facts.

I will always give my heart out to those who have the courage to speak.

I don't care what happens next.

Cause this isn't about Jussie.

It's about us.

All of us.


Thursday, February 21, 2019

The Power of Fact

Some think that researchers are people who sit behind computers and dream up studies of little consequence. We have come to be a society that has discarded facts and lionized opinion. But research can do something magical with their statistical wizardry if it asks important questions. Questions that have the potential for real life impact. As such is a recent study done by H-CARDD  (Health Care Access Research and Developmental Disabilities) here in Toronto. Here is an infographic from their latest research:

 

 I just wrote the team there and this is what I said to them. (I hope they don't mind.)


Hi, could you please pass along to the H-CARDD team my thanks and my congratulations.

Congratulations for completing and publishing this report.

My thanks, both as a professional and as a disabled person, for doing radical research that ‘speaks truth to power’ … you are constantly creating facts in an arena where opinions and anecdotes used to reign. Because of your work people in general, but most importantly, people in power can’t ‘not know’ this. It matters. It shows that the lives of people with intellectual disabilities are on the line. It affirms the idea of both ableism and disphobia as a constant theme and a constant threat in the lives of people with disabilities.

I am in awe of your commitment and your courage.


Now the opinions in the letter are mine and the reading of the report is filtered through my understanding of the world. But this is what I took from reading the report.

Research like this gives us ammunition with which to clearly state our case when we want to advocate or inform or make policy. It allows us to confirm what we've seen as a real phenomenon.

I invite you to read the whole report which you can link to from the one I've provided.

Take the time.

Become informed.

It matters.






Wednesday, February 20, 2019

The Ramp and The Woman In The Cobalt Blue Sweater

It was hard going.

I was pushing uphill, on carpet, and was working very hard. I could feel my muscles burning, I could feel forward motion. "This is what it's all for," I thought, as I crept slowly towards the top of the long ramp. The hours in the gym, the hours with dumbbells at home, the aerobic exercises I follow along with on-line, all of it, it's for this. I don't mind that I'm struggling. I don't mind the challenge, As long as I'm moving forward.

She was wearing blue. A nice cobalt blue sweater. That's what I remember seeing first. She had been standing near the top of the ramp speaking to a friend. I know they noticed me. I could see them react to the sight of me coming slowly up the ramp, I could see them pause and decide what to do, I could see them relax into the idea that doing nothing was probably the best option. I also knew that if I had asked them, they would have been there in a shot. But I didn't. I didn't want their help. I appreciated their decision to simply let me do what I was doing. Being disabled means gratitude when people don't take an interest in you.

The ramp was long. It was carpeted. The carpet was plush. My shoulders were burning, my breath was coming short, I was tiring. I was only a few feet away from the top. I don't know why but with every long ramp I've ever gone up, it seems like the last few feet are at a steeper grade. I stop for a second to catch my breath. I look at how much of the ramp is left and I begin to feel defeated. Will I need to ask for help.

In my pause, the woman in the blue sweater finished her conversation with her friend and started towards me. "No!" I thought, but did not say, but my hands tightened around my wheels. I would not be pushed. I would not have this taken from me. I wanted to finish. I prepared for the confrontation between interference and independence.

But, in the end, I took her help.

In the end, I was grateful for it.

Because what she did, for me in that moment, mattered.

She got close to me, leaned down and whispered, "You got this!" Then she turned and left.

And I realized that I did, I did have it in me to finish.

I began pushing again, harder, like my muscles had fed on the encouragement. And I made it to the top.

Yes, the hours in the gym paid off. Yes, the hours of time at home on the wheelchair treadmill paid off. Yes, my dedication to making myself stronger paid off.

But a word of encouragement.

That's the kind of help I really need from time to time.

I have learned from this. Sometimes the only help people need is our belief in their ability to do it on their own. Sometimes the only help people need is room to succeed. Sometimes, not always, but sometimes. In our busy lives we can forget to give what's needed and simply take other's victories from them as if they were unnecessary bother.

"You got this," she said.

And I did get it, in every possible way.

Saturday, February 16, 2019

I'm Good With That

It lay there on the floor.

I was standing. I can stand. I can walk a bit. But I have to have something to steady me, a wall, a railing, and arm or shoulder. I had put my clothing in the laundry hamper and a receipt had fallen out of my pants pocket. It lay there, on the floor, looking like it needed to be picked up and put away.

I stood there and looked at it.

It's only been in recent months that I can reach down and pick something off the floor. I still have to be careful because of balance, but mostly, I can do it.

But I haven't had to do it for a very long time simply because I couldn't do it. In fact for nearly 13 years the floor and I have only had passing acquaintance. I could wave to it, to no effect because it never waved back, but that was it.

For years and years and years, I would simply let Joe know it was there and eventually, usually sooner than later, he'd pick it up and deal with it. He never minded, he was good with helping me where I needed help.

It's a complex thing being disabled. Because though I thought I wanted the skill of bending over and picking up things I'd dropped. It was really easy to simply let Joe do it. And 'easy' is something I can get used to.

I had a decision to make, pick it up, or leave it for Joe. If I didn't pick it up, he would never know that this was now about my laziness turning his help into servitude. He'd never know. But, shit, I would know.

I picked it up.

I'm no hero here, the reason I'm telling you isn't to point out how I made the right decision and Joe's day was lightened by a tiny little bit.

No.

I'm wondering if it happens with disability that habit destroys motivation. If it's just a habit that you help me with my shoes, then why would I be motivated to use the skill once I'd learned it. It's easy to live the easy life.

I remember working in a school tying the laces on the shoes of a little boy who simply let me do it. It wasn't until another staff told me he could do it that I realized that he had tricked me by my own need to be helpful and my own stereotype of what I thought he could do.

Teaching a skill and then giving the privilege of using it.

Discovering one's own personal power.

That's cool.

Very cool.

Joe won't know until he reads this that I had that little debate but I know when he does, I'll be picking shit off the floor for the rest of my life!

And ... I'm good with that.