Monday, September 29, 2014

That Pain Thing

A number of people have emailed me, or messaged me, or texted me; I never realized that there were so many ways to get in touch until now. Anyways, the upshot was that I had written about pain management and how that was all going. I had written about going to the doctor here but not followed up. They were right, I hadn't.

I'm still new to talking about this experience and still a little shy about the whole thing. I don't know why it causes me discomfort but it does. I guess, as I said before, I am worried that it will affect how people understand and process my disability. I had thought that having a disability was a personal experience, I hadn't realized that disability is also a social and political experience. People will layer their own personal views, fears and anxieties about disability on you. People will also layer their political views about disabilities about costs and funding, about access and about resources, and therefore, eventually about the worth and worthiness of your life. Pain seemed to me to accentuate people's fears while lighting a flame under the 'let us remove that pain by assisting you into heaven' people.

So, being open about the pain thing concerns me.

I have indeed been prescribed pain medication, it's not strong, it's not addictive, but it's quite effective. I take one at night time and several things happened all at once. First, I thought the pain wasn't constant but it kind of was, I was just used to it - it felt so strange to be pain free. Second, my sleeping improved to the point that I actually slept through the night. I typically get up very early, but that first night I slept through right until 5 in the morning. Unthinkable.

I feel more refreshed.

In the end I'm glad I went to the doctor, glad he took the time to really listen to what I wanted and what I feared. In fact, he did this twice. I was so concerned after the first consult, I went back for a second. He was good about that and, I think a bit surprised that I was being so cautious about this new step in my health care.

There were are, the update. I should have just written it, not waited until I was prodded. But there you go, I'm cautious.

If anyone is waiting, like I did, if you've got a good doctor that you trust, go ahead, ask. It's an amazing thing to sleep and wake without pain.

Saturday, September 27, 2014

Dave and Joe on our BGW

Sometimes you just get to be at the right time and the right place.

Some background: Joe and I have had the weekend planned for a while. It's our Big Gay Weekend. This is probably a little less exciting than you might be imagining. On Friday we saw two movies, one in the theatre, Pride, and then one that evening, Free Fall. Saturday we're going to Love Is Strange and then Sunday we're off to our local gay theatre company to see Freda and Jems Best of the Week. Rah! A week in gay culture.

So after seeing the movie, "Pride" on Friday we decided to go out for a beer. Along the way we ran into someone who we hadn't seen in a while. After we caught up, he began telling us about his son and the difficulties that his son was having. It turns out that his son has what dad called, a "mild intellectual disability," and that began a longer conversation. He had questions. I tried to answer them the best that I was able to. He was a well informed dad but hadn't been able to ask some questions that truly needed to be asked. He also needed to have verified that his worries were real, the dangers his son faced, socially, were worth attending to. I didn't tell him anything he didn't know, but I was able to give reassurance that action needed to be taken and strong advocacy for the appropriate supports, services and education needs to be undertaken.

It was a good conversation.

It had seemed just chance that we made our way to the pub in the way that we did, it had seemed just like a spontaneous decision to go for a drink after the movie, but after that, it seemed like we were needed to go and be in a particular place at a particular time.

We were in the middle of our Big Gay Weekend, and here were were talking to a father about his son, sharing information, listening to the stories he had to tell. And, oddly, it fit right in, because, of course, a Big Gay Weekend doesn't mean anything more than understanding that the world is big and diverse, that people need people and that love, whatever kind of love is needed in whatever kind of situation, is what makes us all human.

So here's to love, humanity and happy circumstances - we hope for more of those on our Big Gay Weekend.


Friday, September 26, 2014

Ken Jennings: Another Day, Another Bigot

It is not surprising, tragically, for me to read of another famous person saying another stupid and hurtful thing about people with disabilities. This time it's Ken Jennings who, for no particular reason than the thought that bigotry and prejudice was funny, tweeted this message:

"There is nothing sadder than a hot person in a wheelchair."

There was an immediate, and good for us, and thanks to our allies, reaction. People clearly let Mr. Jennings know that his remark wasn't funny and that it certainly wasn't appreciated. Many of the responses from people with disabilities were filled with more hurt than outrage. The message to Mr. Jennings was clear and unequivocal - apologize and take the tweet down.

For awhile there was speculation that Mr. Jennings' account had been hacked. But as time passed,  that proved to be untrue, as the tweet stayed up and as Mr. Jennings acknowledged writing the tweet in this interchange:

Follower: Probably your best.

Mr Jennings: The Internet does not agree.

In that statement Mr. Jennings acknowledges both that the tweet is his and that he is aware of the reaction that the tweet caused. To be sure some of those who reacted were non-disabled people clearly saying that the joke wasn't funny but many, many, more were from people with disabilities making sure that Mr. Jennings clearly got the message that his tweet was hurtful, untrue and that it expressed attitudes that further the cause of discrimination towards people with disabilities.

And.

Given the opportunity to reflect, he does not apologize.

Given the opportunity to act, he does not take the tweet down.

Let's take a look at what he said:

"There is nothing sadder than a hot person in a wheelchair."

I need it to be clear that he said 'person' not 'woman' because many of the responses seemed to think that he was addressing his remarks towards women. He was not, he was targetting his remarks at we, the people, who have disabilities.

His assumption, clearly, is not an uncommon one. The sexuality of people with disabilities confuses the non-disabled. There are a lot of assumptions about us and what we do with our naughty bits. His tweet simply confirmed a lot of stereotypes:

1) We are non-sexual.
2) We do not have the capacity to be sexual even if we wanted to.
3) Our disability immediately makes us unattractive.
4) We live lives of quiet desperation and loneliness longing for the touch of a non-disabled partner.
5) Disability cancels out 'hotness.'
6) Ugly people deserve to be disabled.
7) Disability makes people ugly.
8) "Hotness" is wasted on people with disabilities.
9) If we are sexual or want to be sexual - ewww, gross!
10) Our sexuality and our attractiveness is a subject acceptable for public speculation.

This tweet, once tweeted, tells us little about Ken Jennings. It simply tells us that he, like many people have confused and archaic views of people with disabilities.

This tweet, staying up in the face of heartfelt protest, tells us a lot about Ken Jennings. It tells us that he does not take our sentiments, even powerfully expressed, seriously. It tells us that he does not value the voices of people with disabilities in the same way he would value protests from other minority groups. It tells us that Ken Jennings bigotry runs deep, like ugliness does, to the bone.

Should you wish to enter into this latest attack on our essential humanity, please tweet Mr. Jennings, or leave him a message on his Facebook page.

I suggest that those of you who wish to, contact Mr. Jennings publisher: Little Simon and let them know what you think of someone with Mr. Jennings attitude towards people with disabilities publishing children's books. The link will take you to the contact page.

I suggest that if someone has the contact information from Jeopardy, you send it to me or put it in the comment section so that I can add it here ... write them and find out how they feel about their show being attached, in every news piece about this story, to Mr. Jennings' name. Why haven't they spoken out?

Mr. Jennings, if you ever read this, be comforted that I am a fat gay dude in a wheelchair - and even at that, I wouldn't touch you even if you had a ten foot pole.

Thursday, September 25, 2014

A Turquoise Wrap

On my way home yesterday we stopped at a traffic light. We noticed a young woman walking with her father, her face was light up in a huge smile. Her dad, laughing. A nice scene. As she rounded the corner and came into view, we both noticed that her left arm ended an inch or two below the elbow. That's not what drew our attention to her, it was her and her father's very animated conversation. After her father said something, she started laughing out words and using both arms to help with her description. Natural, beautiful and free.

She then looked ahead.

Her face changed.

She was wearing a bright turquoise blue tee shirt, loose and baggy. Instantaneous and simultaneous with her eyes locking on something further north, her arm quickly dropped to the hem of the tee shirt and pulled it up, wrapping her arm, making her difference less noticeable.

She didn't look fearful.

She didn't look ashamed.

She looked angry.

The light changed, we drove away. But that small movement, that covering up, that defensive gesture has stayed with me. I don't know what she saw, I don't know what was head of her - but at the same time I did. So do you.

Just a teen.

And she knows the world isn't always safe for those with differences and disabilities.

I understand her anger. I just hope that her anger will be appropriately directed. I hope that she is on her way to a wonderful life, full of joy and full of moments like she was having with her father. I hope all that. But I also hope that her anger will turn to advocacy. I hope that she will find the way and the words that she needs to do more than survive, more than prevail.

I understand her anger.

And I know what she saw.

Wednesday, September 24, 2014

Doors (Part Two)

We were at an event with a lot of other people. Hundreds of other people. I had difficulty finding the accessible washroom so I asked one of the people working there and was surprised that she didn't know. She went and found someone who was able to direct me. Joe headed off with me, both because I needed his help and because he's 61 and never misses an opportunity to spend a penny. We found the restroom exactly where we were told it would be.

Now, I need to describe the doors. There were two.They looked like when they were open they would create one large space, but instead they were actually two separate doors. So when both were open, you'd have to go through one side or the other, the door jamb blocked anyone from entering the middle. I hope you have this pictured, I just spent 20 (!) minutes looking for a picture of this on the web and couldn't find one. Saw lots of doors though - kept trying to find meaning in it, poetry even, but sometimes doors are just doors.

Over the several hours we were there I went to the washroom three times. (See what you get to know about a person?) Each time we'd approach the door, open the one I was going to go through, and someone would be coming out of the other side. They'd see me coming towards the door and they'd hold their door open. To NO effect because their actions didn't make my door any bigger or my entry any smoother. Even when either Joe or I said, "Thanks but we're good here," they continued to hold the door until I was through.

Joe and I laughed about it each time. It was silly. The door they held wasn't the door I was going through. They'd be able to see that it was actually a separate door. But they held it anyways.

Here's the thing.

I got to thinking about this. It was weird but they guys doing it weren't. They all seemed nice. I say 'all' because this happened every time I entered and exited the washroom. 6 times. 6 men. None of them stared at me, expressed a need to watch me go through, or did anything even mildly odd. Except hold a door that didn't need to be held.

I began to wonder if these particular guys, and maybe some of the others who have helped in equally odd ways, we acting out of some deep seated, learned as a child, set of manners and morals. Perhaps they'd be taught to be helpful, to be aware of the needs of strangers, to be willing and step in and step up when assistance was needed. Maybe it was kind of a chivalrous action, carefully taught and deeply learned.

Maybe it was less about me.

More about them.

In the situation yesterday, help hurt. Not physically hurt, but hurt my ability to go through the doors. By holding the door he disenabled me from getting out the two doors. I had to intervene and I had to get him to stop so I could go about my business. His need to watch me, I'm sorry, is creepy to me. I wouldn't ask any stranger to watch anything that they were doing no matter how curious I was. That's different.

But maybe it sprung from the same source.

I think I have to be more careful in understanding what people are doing, and why they are doing it, maybe I just need to focus on being heard when I need to be heard. By the time we were ready to go, I had stopped telling the men holding doors I wasn't going through that their help wasn't needed. They weren't in my way, their desire to be helpful was kind but unnecessary.

Unnecessary kindness is to be preferred to unnecessary cruelty.

But maybe it wasn't unnecessary - because what it did, I realize only now as I write this, is let me know, that if I did need help, if there was an emergency, there were 6 men there who were, soul deep, ready.

Tuesday, September 23, 2014

Doors (Part One)

I don't know what I'm taking from them. I'm not sure why a simple, polite, "No, I'm good, thanks any ways," becomes a slap in the face or a humiliating rejection. I want to yell, and I'm going to be graphic here, "It's just a fucking door!"

One of my first big accomplishments as a wheelchair user was to be able to exit my apartment building on my own. There were two differing barriers to be overcome. First is the lobby door. It is a single door that is locked at all times. From the lobby it opens with a push on a lever, I have to do that while pushing the chair forward to get the door slightly open, once done it's a big push to get it to swing open and then another to get over the bump on the floor created by the frame. This is easy for me now. More difficult is the double doors that are the entry and the exit from the building. For this I have to position my chair such that each footrest faces a different door, then, another big push. I cannot go through that door with only one door held open. The balance isn't right, I just can't do it. In this case, help hurts.

So, this guy, a nice guy, holds one of the doors this morning. I'm just through the first door, I'm holding it for him. I say, "No, I'm good, thanks anyways ... I'll hold this one for you." He says he's not in a hurry. I actually am in a hurry, I want to be out by the time Joe comes round with the car. I say again, "No, really, thanks."

Now I get the hurt look.

And a refusal to move.

He stands holding the door.

I explain, I tell him that I can't get out the door with only one getting held, that I can do it on my own but I need both doors to be closed. He begins to reach to hold the other door. I tell him that if he does that I'll have to go out under his arm pit and I really don't want to do that. He smiles at my little joke but continues.

Finally I simply tell him that I appreciate it but if he really wants to help he'll just let go of the door. Joe has now pulled up and I want to get out. He lets go of the door reluctantly. Then he says, "Can I watch how you do it?"

I don't like being watched doing things like this. My day is just starting and this is wearing me out. I shrug my shoulders and push out the door easily.

He's all excited, "Wow, man, that's awesome!"

This is how a fat man in a wheelchair makes porn, inspirational that is.

Monday, September 22, 2014

How It's Done

There was a lot of planning involved. Tickets, always the first hurdle, were cumbersome to get. We were going to a dinner show and the website allowed only one 'special' option. "Vegetarian," was one, "Accessible seating," was another. So, a phone call was made, everything was booked, now we just waited for it all to go wrong. Now don't you call me a 'Negative Nellie' - expecting problems is just part of life when you use a wheelchair to get around.

In fact, it all went incredibly smoothly. We got in, no problem, seating was no problem, vegetarian meal was no problem. More than that, the staff were welcoming. From greeting to seating we were treated with the same degree of welcome that was accorded everyone else. We were both impressed.

The place was packed.

Packed.

800 people sat at tables round the stage.

Near the end I whispered to Joe that I'd like to get to the washroom before the crowds descended on them. He agreed and we snuck out. In the bathroom we discover that the accessible stall doesn't have bars. It has a tall toilet. It has lots of room. But no grab bars. Yikes. Without getting into a description of what happened next, lets just say it was, um awkward. And, of course, unnecessary.

We went back in. Caught the rest of the show. Cheered for the performers when it was over. As I sat there I thought about the experience. They were clearly welcoming to disabled guests. They ensured, in an interactive show that we, in the furthest seats away, were involved and included. Their attitude and manner were accessible, what's going on with the toilet.

I decided I'd write a note, I didn't want to ask to speak with a manager because, I'm guessing that some of the people that we go out with get a little tired of that. But, as it happened, as I was leaving I got a little separated from the group I was with. I saw a man looking very managerial standing at the exit doors.

I approached him and asked if he was the manager, he was.

I said, "I am going to make a complaint but first I want to say that I had a terrific time, your staff are awesome and welcoming, you've created a wonderfully accessible experience and I appreciate all of that." I paused, reading to move on to toilet talk, in that pause he thanked me for the positive feedback, particularly about the staff. "Because of all this sense of welcome, I was really surprised to go into the bathroom and see that the accessible stall had no grab bars around the toilet. It makes it for some difficult to use, for others impossible to use. I looked at where the toilet was, this is a really easy fix, so could you fix it."

I was momentarily annoyed when I finished and he picked up his phone and began typing. I waited. I wanted to hear what he had to say. When he finished typing he looked up and said, "We've just had the toilets all redone, the handicap bars must have been left off when that stall was redone. I'm sorry. I've just texted the maintenance department, I'll have that done tomorrow."

Tomorrow.

Tomorrow!

What? No defensiveness? No explanation as to why it can't be done? No rolling eyes and patronizing promise of some vague future fix?

Tomorrow!?

That, my dears, is how a complaint needs to be handled.

Tomorrow!