Wednesday, June 30, 2021


 It's been an interesting couple of days here, what with the joys of aging and the perils of needing help. I was formally assessed a few days ago to determine if my disability was such that I could use a PSW to provide assistance. I had to answer a thousand questions and then wait while those questions were calculated and turned into hours, if any. As it turns out I qualified for one hour a day for seven days a week.

I was assigned two PSW's who would be providing service to me, I considered myself lucky because I won't have a revolving door of people coming into my apartment. I decided that before I'd let them provide service (touch me) I wanted to talk to them about the attitude I expected and the safety I needed. I've now had both those meetings and tonight will be the first time that I will be getting help.

It is at this juncture that I begin to appreciate all that Joe does for me. He didn't sign up to be with a wheelchair user and he certainly didn't know how acid-tongued I could be when frightened. But nevertheless, we both have agreed that it's time to slowly lift some of the responsibilities off his shoulders and give them to someone else. But for me, yikes.

A couple weeks ago after a really bad day, Joe assisted me into bed and when I laid down it was the first time that day that I felt safe. That was the gift he gave me. I cherished it.

As we met the two PSW's and I had a chance to think about our conversations I realized I had to lower my expectations. You see, Joe does what he does out of love for me, incomprehensible love, and it is in that love that comes the excellence of his support, the gentleness of his touch, and the desire for me to feel no shame. That's a lot to lay on someone else, and I can't.

I just want good competent care.

I don't need anyone else's love and esteem.

I have that in large measure.

So we will see how it goes tonight and go from there. I am willing to simply try, and in the trying, allow my vulnerability to expose itself. That's hard for me. But, it's time I asked for and received the support I need.

Friday, June 11, 2021


 I am not afraid of going outside.

But I have grown quite comfortable with my present status of being housebound. There is probably a better word for that, but that's the only one I know. I haven't been out for a couple of weeks and am not planning to go out this weekend, even with the lifting of some restrictions. 

There are two reasons for me to continue my stint as being housebound.. 

The first is that the activities that would pull me out are still restricted. The gym, still closed. The mall, still closed. Me, still in. I'm just not interested enough in what's presently on offer.

The second one is more personal. I am tucked away from people's stares and unwanted commentary about my life. I am safe here. Joe may look at me with exasperation sometimes and annoyance at other times but he never looks at me the way the world sees me - a fat freak in a wheelchair. Never. Joe sees me, he reacts to me based on what I say or do, as would be expected.

Yesterday we watched a TV program that played, for laughs, a scene wherein a young man got stuck having to go on a date with an 'uggo' which I've learned is a slang term for someone ugly. The 'uggo' in this case was a rather pretty woman who in the eyes of the world, was fat.

You expect me to go willingly into that world?

There was a time when 'ugly' laws and statutes made it illegal for some to be out in public. That those laws and statutes are no longer in place does not mean that they didn't make the transition from being written in law books to being written in stares and glances, in disapproving faces, and in disgusting commentary..

So, no thanks.

I will go out in the next round of lifting restrictions, I want to do what's on offer then, and I willing to brave presenting myself to the world again.

Sometimes Disability Pride is shown just by going out.

Tuesday, June 08, 2021



It took me a long time to get to pride. The walk through shame was long and perilous. I can't describe the feelings I had in marching in Toronto's first pride march, my heart raced like an engine that was powered by shame set ablaze by fear. When I remember that day, I remember those feelings, so much so that I have to force myself to remember that, fear or not, shame or not, I was there, I marched.


I lectured for a couple of years before Joe ever came to hear me. I invited him to come to hear me speak to an agency serving youth in the city of Toronto where I had been invited to speak about homosexuality and intellectual disability. I remember Joe sitting there, his nerves for me almost out of control. And in the middle of the speech, I stopped and identified him. I felt the stirrings of pride in identifying this man who loved me.


Over the next couple of decades, pride was a companion for most of the journey. But when I had my first catastrophic illness, I was terrified. But I was not alone. I knew though that this would test our relationship in ways different than before. Joe was with me through the diagnosis and beyond. It was clear that being with me was going to involve a lot more work for him. He's still here, with barely a complaint, he offers me help.


Saturday, June 05, 2021

Realistic Pride

 So it's six days into Pride month.

And I'm angry. I'm angry at the fact that, try as I might, I just can't seem to let go. I saw a post on social media this morning from a fellow proudly displaying the rainbow flag and loudly sounding off about his 'allyship' with the LGBTQ+ community. Nice, right? Appropriate sentiment, right? On our side, hoo rah! 

But you see I knew him when. I knew him when he was comfortable with his heterosexual superiority. He proudly spouted about how two men couldn't actually love one another. He waxed poetic about being in love with his wife and told story after story about their fabled life. I always left any meeting with him like I'd walked through the sludge of trite, overblown, sentiment.

And said nothing.

Because as brainless and typical as he was, he had power. He had used that power. He had reported people, perfectly fine people, to their bosses and demanded their firing. I don't know how many notches he had in his toolbelt but there were many.

And along comes the wind of change

And he is determined to let his pride flag flap in the breeze.

Now he's a supporter.

Nowhere is there apology. Nowhere is there an acknowledgment that he was our enemy before he became our friend.

I wonder what is asked of me.


I can't muster it. I can muster anger though. Joe and I were a couple when it was still illegal to be gay in Canada. Our first acts of love were as criminals. When we sought out those of our kind, we went to clubs where it was never a certainty that you would make it home alive. 

There is a picture of the two of us from our early university years. We stand beside each other. No touch, we looked like cousins forced to take a picture together. We were afraid of pictures. We were afraid of evidence. We were afraid to draw breath too loudly. We were afraid that we took up too much space. We were afraid, so we locked the world out and lived in sanctuary.

This happens to me every year at pride. I remember too much. I remember too clearly. I grieve for our lost life, for our inability to face down fear, then, and inability to forgive, now.


I'm sorry I can't.