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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.)

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.