Friday, April 24, 2015

Born With Purple Eyes: A Blog With Two Endings

Photo description: close up of an eye, the iris is purple.
 I was just about finished getting my hair mowed when she came in. She was a lovely white haired lady wearing incredibly cool dark rimmed glasses. This was a woman who managed to create her own style, from the cut of her hair to the cut of her clothes, yet none of it looked like she thought about it very much. Her personality was warm and welcoming, I imagined if you got close to her she would smell of apple pie baked in Covent Garden.

She noticed Joe's new jacket hanging with the coats at the back of the salon and asked, "Who owns that beautiful blue jacket?" Joe answered that she did. She said, "My son would love that."


She paused.

"My son has the most amazing blue eyes," she said, "when he was born his eyes were a lovely purple, even now, his eyes are blue with a slightly purple hue."


She paused.

"When people meet him they really notice the colour of his eyes. He is a lovely, handsome man."

One more time.

She paused.

And continued with pain in her voice.

"And he thinks he's ugly. He really thinks he's ugly. I can't understand why he feels that way. I can't understand why he can't see himself as he is, beautiful."

Then, realizing that she had slipped into intimate conversation with strangers she brushed the conversation away and deftly changed the subject.

This blog has two endings.

First Ending:

As I listened to her, I sat there, looking at myself in the mirror. I saw what people see. I saw a fat man in a wheelchair, bald headed, eyes with luggage enough to move a movie stars shoes. I saw what people see. I know what strangers think of me. I know they see me as ugly and ungainly and unworthy and unlovable. I know that.

But I don't feel that way.

I don't feel ugly.

Or unworthy.

Or ungainly.

Or unlovable.

At least I don't feel those ways very often, maybe only in very low moments. My life is so full of purpose and so full of living that I don't think of my looks very much at all. There are moments, and I've written about them here, when I see myself reflected in the eyes of others - cruel eyes with shallow vision. I may be stung by what I see there, but it passes, it always passes.

I think because I'm loved.

And because I rise every morning to purpose.

And because, at my core, I'm OK with me.

I realized, as she spoke, that I am a lucky, lucky, man.

Second ending:

As I listened to her, I felt her sorrow. I felt the pain of the words that she was saying. She was a mother that loved her son. She was a mother who wanted her son to live with joy and not be plagued by thoughts of himself as ugly and unworthy. She was a mother, whose voice gave away her inner thoughts, "What did I do wrong? Why does he see himself in such a negative light? Was it what I said? Was it what I did? What could I have done differently. Did I do this to him?"

Parents don't need much encouragement to look to themselves with blameful eyes. Her son may see himself as ugly, but she sees herself as responsible. Her burden may be worse.

I would have loved to know her well enough to say, "Your son lives in a world, separate from you. You see his beauty. But he doesn't measure beauty in his mother's eyes - he doesn't trust that you can see him as others see him. He lives in a world that bombards men, in the same was as it pummels women, with impossible images of beauty. Men, these days, are presented in magazines as flawless, strong jaws, washboard abs, shoulders strong enough to carry the fantasies of strangers.

Parents are responsible only for loving their children and for raising their children in a loving environment. Her love of him was palpable. Her worry for him a tangible thing.

He has a mother who loves him.

And because of that, I believe that he will one day, look in the mirror and see what she sees.

I want to believe that.

So, I do.

Thursday, April 23, 2015

Dance On!

Disability pride?

Unashamed living?

What does it look like?

It looks like a little girl doing a dance.

I wept watching this video. I was stunned by the beauty, the joy, the power and the passion of this little girl. She demonstrates, how powerful pride is. She shows the world that we, as people with disabilities, eschew shame. She knows how to be, simply be, who she is and do what she does.

Out of the shadows and into the light.

Her life has limitless potential, not because she's brave, or inspiring, or any of that stuff, but because she knows already, how to be out and proud.

Living pridefully.

Dance on, little girl, dance on.

Wednesday, April 22, 2015

What Linda Said

Image result for heart broken
Description: Drawing of a broken heart, the heart looks torn down the middle and is the colour of bruise. Across the image is the word 'Heartbroken.'
Last night I had a chat with Linda.

I have known her for many years and my affection and admiration for her grows every time we meet, every time we talk. I called her because I wanted to tell her the news of Joe and I getting married. She's one of the last calls I had to make. I was a little nervous about the call because Linda is an elderly woman with Down Syndrome. She is younger than me, by two years, but her journey has been hard and the road she's walked has been full of many barriers to overcome, and it shows. She is a very conservative and very faithful woman. Her prayer life is rich and she believes, absolutely, that God love her. I think, quite literally, this belief saved her life.

The church she goes to does not endorse the idea of same sex marriage. Well, that's maybe a tad understated, they are pretty emphatic that homosexuality, along with feminism, abortion and 'liberals' are all going to destroy society and bring down 'the family.' I've never talked to Linda about Joe's and my relationship, she knows us both of course, but I'd never had the 'talk' with her.


It was time.

I told her quite gently. I wanted her to know that Joe and I loved each other and have done so for 46 years. I wanted her to know that we were getting married and that the marriage was going to be done in a church, with a minister, in front of God. All of this I knew she would understand and approve of - well except maybe for the 'two men' thing.

After I finished. Linda sat for the longest time.

And then, quite simply, she broke my heart.

"So Joe loves you?" she asked. I told her that he did.

"And you love him?" she asked. I assured her that I did.

"So you aren't alone?"

"No, I'm not."

"I'm glad. They never let me love anyone. I tried but they always stopped it. It's too late for me now. I'm glad it's not to late for you."

Tuesday, April 21, 2015

Got It Wrong on Friday

I was asked a question in a seminar that I was giving, "The Ethics of Touch," that took me aback, not because it was inappropriate but because I'd never been asked it before, and I gave the wrong answer. That has bothered me ever since I realized it was wrong, which was about 40 minutes after I could actually do anything about it. We were driving away. It was Friday and we were heading home.


That means, I thought, I've got to just live with the fact that I messed up. I gave a personal opinion in place of a fact. That's a temptation that I find hard, sometimes, to avoid. So, I know some of the folks who were at the seminar are blog readers, I'm hoping they'll get the right answer to the person who asked the question.

Here was the question:

"I've been taught that when I'm talking to someone in a wheelchair I should crouch down so that we are looking eye to eye. That way I'm not towering over someone when we're talking. Is that right?"

Now, I have to admit, as I have, that I was taken aback, but I also have to admit that I have personally strong feelings about this. This led me to answer, as a person with an opinion, yet present it as a fact.

Here's the thing. I don't like it. I really don't like it when people crouch down or kneel down to talk to me. I'm not a queen with the power to bestow knighthood, so stand the hell up. I feel that when someone crouches down that:

1) they are doing me a big ass ol' favour.
2) that I'm to be grateful for the favour
3) the crouch  or the kneeling centres me out even more
4) it's patronizing
5) it makes it look like talking with me, a disabled person, is a whole lot of work

The first time someone knelt down to talk to me. Eye to eye, I was startled. I suggested he stand up but he insisted. We talked for about five minutes, and you can't make this stuff up, when he went to stand his knees locked and he couldn't get up. I had to turn my wheelchair so it was sideways in front of him and give him my arm, and the armrest of my chair, for him to get back up. I found it hard not to laugh, I didn't because he was really trying.

And that's what bothers me - I don't want people to be constantly trying, putting effort into what should be effortless.

So when you talk with me. Stand the hell up!


Here's the thing.

That's ME.

That's decidedly not everyone.

I should have said that I don't like it, but that the best thing to do is ask the person what would make them the most comfortable. After all I'm tall and I'm in a tall chair.

Why that simple answer didn't flow from my mouth, I don't know.

But if you are reading this, dear question asker ... it was a great question to which I gave the wrong answer.

Here's the right answer: Ask the person you are talking with what they would prefer.


How hard was that?

Too hard for me anyways.

Monday, April 20, 2015


Photo Description: Line drawing of a sneaker with the laces untied.



Words. Sneaky, sneaky words.

When I wrote the blog announcing that Joe and I had decided to get married, I did so with some trepidation. I know that some people reading this blog read it primarily for the disability aspect of my writing and that they are not so comfortable with the gay aspects of the blog. I remember back in the second year of my writing this that someone threatened to organize a boycott of my blog unless I agreed to write about any aspect of my life, or of disability, with exception of the 'gay stuff.' Well, I'm glad to say, that the boycott went nowhere and the support of my blog readers remained strong.

I'm finding an interesting phenomenon though, with words and with how people use words when they write to me, or speak to either Joe or me, about our upcoming nuptials. The use of the word 'gay' as a qualifier when talking to me about the wedding is a relative constant. Let me say it clearly, we aren't having a 'gay wedding' we are getting married. And we are getting married at a wedding. That we are gay is irrelevant to what the ceremony is and what the ceremony means. Using a term like 'gay wedding' or 'gay marriage' may sound to you like acceptance but to me it just sounds like prejudice wearing sneakers.

"I hear you and Joe are going to have a gay wedding!"

This sounds, and I think it intends to mean what it sounds like, as if we are having a different kind of ceremony with a different kind of result. It's not like a straight wedding which leads to a real marriage.

Joe and I have lived together for 46 years. Our relationship is imperfect, which makes it both fun and a struggle at the same time, and we are still working to get things right. We can still be difficult with each other. While we aren't shouters (any more) we can certainly be creative in the ways that we can communicate disagreement and displeasure. It's just a normal relationship between two people. It's not a 'gay relationship.'

So please.





Our lives or our relationship.

Words can communicate so many things. And let me just say that sneaky bigotry is still bigotry. Sneaky prejudice is still prejudice and we notice.

We. Notice.

Sunday, April 19, 2015

Sigmond Freud To The Customer Service Desk Please!

I thought it was a battle to which the winner would be proclaimed 'the most polite.' That's what it seemed to be when the door opened. Some hapless fellow got there first and, noticing us coming, stood holding the door. We got there at the same time. Me in my wheelchair, her in her industrial strength running shoes. As we got there at the same time, I said, "Go ahead."

And then it started.

"No you go ahead."

"No you go ahead."

As we continued the emphasis began to change:

"No YOU go ahead."

"NO you Go ahead."

The poor guy at the door is looking helpless, he didn't know or how to intervene and get the two of us through the door.

I know I was being stubborn but I offered first. I like to be in a position where I can defer to another's needs. And besides that I OFFERED FIRST.

Finally, I go for a joke, "You know, I'm comfortably seated, this can go on for awhile."

Then she said, "But you have to go first, I'm supposed to help people like you. It's what's right."

I'm guessing she didn't mean 'morally right' but 'culturally right.' It's right in our culture for the non-disabled person to be the person that helps someone with a disability. It can't be right for a disabled person to be in the helping role - that would upset the apple cart and society would crumble into the abyss of equality. Who wants what that shit would bring?

"Well, then, I think I should let you go first because you are a woman." I thought this was the perfect rejoinder to show how silly this was.

She said, "Well, put that way, that makes sense."

And it ended. We were both through the door. The fellow who'd been holding the door said that he felt caught is some weird psychodrama.

Maybe he was right.

Saturday, April 18, 2015

Annoyance, Identification and Empathy


It's part of the experience of daily living for everyone. Everyone. And in many cases the annoyance is understood, people around are empathic, compassionate and supportive. I remember being in a store hearing a woman, upset that she had driven into the city to find that the section of the store she wanted to visit was under renovation, express herself and her annoyance clearly. The staff were apologetic, they made it known that they would feel that way too. In the end they all agreed that the situation was unfair. One clerk called around to where the customer could find similar products in a store nearby. It was resolved.

It wasn't resolved because of the store nearby but because the clerks there understood the frustration, identified with the woman's situation and communicated their acceptance of her annoyance as being real and the situation frustrating. It began with affirmation.


The other day Joe and I decided that we wanted to go to a particular store to do some shopping on our drive from one city to the next. It was only a wee bit out of our way and I began my work day with the idea that I'd be doing something fun and relaxing before doing the drive to the next city. When the day was over, I got into the van, and we headed to the store. When I rolled in, I could see immediately that the section of the store that I wanted to shop in was the only section of the store that was up a flight of stairs. I could see that there was no elevator. I was disappointed. I had really looked forward to this.

I expressed my frustration, politely, to the clerk. She looked at me and said, "Yeah, well, that's the way it is." I felt slapped. No compassion. No empathy. No understanding. She stood there with her arms crossed looking from me to the stairs with a 'aren't you used to this by now,' look. Joe went upstairs, after hearing what I was looking for, and he and another, nicer, clerk, brought things down to me. This is not how I shop. I like to browse. Neither Joe or the woman helping really understood what I wanted, so I thanked the clerk who'd helped and we left.

At no point did either clerk show an understanding and appreciation for the source of my annoyance. At no point did they validate that, yeah, coming to a store, indeed coming out of my way to a store, and having the section be inaccessible would be annoying. More than annoying, it was isolating. Sitting at the bottom of stairs while people ran up and down bringing me what I didn't want. Sitting there feeling the mounting frustration of the clerk who brought me a selection of things I didn't want, like she expected me to buy something because she brought them. I work too hard for my money to be buying things to make clerks happy.

I sometimes wonder if people get annoyed with my annoyance because they can't, or won't , use empathy as part of their process of understanding. They could identify with a woman, who was 'like' them. Here the clerk couldn't identify with a person 'different' from them.

I wonder if a large part of prejudice is the inability or unwillingness to be empathic with a class of people that someone devalues. I wonder if the idea of empathy, which requires a degree of emotional identification, is terrifying at the least or sullying at the worst, is actually eschewed by those who simply can't accept the essential unifying humanity of an other, a lesser.

I don't know.

But, it would have gone a long way for me and my experience of the store.