Saturday, June 30, 2018

Moments of Time

So we were sitting having a cup of tea in a small cafe on Bloor Street waiting for Marissa and the girls. When they arrived, Marissa went with Sadie to the washroom and Ruby joined us at the table. Seconds later a man appeared at my side. He moved slowly and carefully, his face was handsome and fragile at the same time. His clothing had not been laundered for a very long time. He had stopped because he noticed Joe's hat on the window sill next to me.

The hat in question looked like it was a Tully hat but it wasn't. He was fascinated by the hat and he reached down and with a gentle hand touched the top of the hat. He was talking about the hat and how it was a special hat. He said that he remembered being there when we bought it, I told him that we'd bought it in the States and he paused and then started talking about the cost of the had he threw out several numbers and when he hit one that was close to what we had paid, he said, with a huge grin, "I knew it, I just knew it."

He and I chatted a bit about hats and he looked at me, his eyes burning into mine. It was like he couldn't believe he'd made a connection, that he was having a conversation. I felt his loneliness and his need. I also felt the firm disapproval of other people from other tables. But those same people looked at me with disapproval when I entered and began moving chairs around to make a space for myself. I felt more a kinship to him than I probably ever would with them.

It was nearing time to leave and I wanted him to know, before we got up and abruptly left, that we would need to go soon. He didn't want the conversation to end. His eyes teared up. He began telling me more about the hat and again and again his hand went down to touch the top of it. He always showed his hands, palms up, to ensure that I could see that they were clean and they posed no threat. He seemed to know the stereotypes that people have about people like him and wanted to let me see that he was gentle and safe and kind.

Now we were getting up to leave. Marissa and Sadie were back and it was time to go to the car and go home. He followed us out of the store and continued to talk. Now about the weather. His hand reached out, not asking for change, but for a chance to stay connected a little while longer. He walked along side of us and then, without a word, turned and went on his way.

I saw people veer away from him as I watched him walk away. I saw the fear on their faces. He was a gentle man with clean hands and a fragile face. They had nothing to fear, except maybe, the fact that that fear would keep them from spending just a little time with a man, who wanted nothing, but a little time and a little attention.

It's was just a few moments of my time.

But, they were important ones, because I learned about Tully hands and the clean safe hands of a stranger.

Friday, June 29, 2018

Right On Time

Today is our 49th anniversary. The date comes from when Joe and I had a 'secret ceremony' led by a Catholic Priest who could have been defrocked for participating in the wedding. No one knew except the small gathering that was there. It was hard going back to work when the ground under my life had shifted and not telling people, pretending that nothing had happened. The silence around our lives was suffocating.

But it had been a beautiful ceremony, in our apartment, and I remember it, every detail of it. I remember Joe's proposal and how amazingly intimate it was. It wasn't one of those wonderful big showy ones, it was quiet and unexpected and terribly, terribly romantic.

The year we count back to is when we were sixteen, meeting in the hallways of Campbell River, and without knowing it at the time, mating for life.

Now, today, we are going for a walk with the girls down on the pathways along the river and into Fairy Lake Park. Kinda funny right. Then we'll have a bite of lunch.

Anniversary dinner is our big tradition. We have hot dogs and potato salad on the deck. We've done this for years and years and years. Joe makes the best potato salad in the land and I'm already looking forward to it.

We don't do gifts.

We don't get each other cards.

We don't have a party.

It's just us, and the girls this year.

We need none of that. All we need is the opportunity to head into another year together. That's the greatest gift we get. Time to be together. That's all we ever wanted. And that gift arrived, this morning, right on time.

Thursday, June 28, 2018

Mother Goose

Yesterday, on the way home from work, we were behind several cars all of whom had come to a sudden stop. From where we were we couldn't see why we were no longer moving. And then, we did.

A Canadian goose and her goslings had been crossing the road and the cars all stopped to insure the little families safety. We smiled both at the kindness of the gesture and at the cuteness of the young birds. In fact, their struggle to keep up with mom and look around at the same time was so comical that it wasn't till they were nearly across the street that I looked at mom.

She was walking, head up, her stride was purposeful, her attitude was that she deserved respect, expected respect and that she demanded the space she needed to get her children from one spot to another. And indeed she got it. No one honked their horns, no one called out at them to get out of the way, everyone patiently waited for the last gosling to clear the roadway.

In my mind I thought of that mother bird. I thought of her a lot.

I loved that she expected to be greeted with respect. That she carried herself in such a way that a message was clearly given, "We share this space and right now, it's mine." She expected, not only respect, but to be given the space she needed at that time.

Then it struck me.

I don't ever expect respect when I go out. Never. Not once.

I don't ever expect to do anything but apologize for the space I take. Never. Not once.

I know that there are those who rise into mornings with an assured sense of their place in the world, with a complete expectation that others know their worth, that their use of space will never, ever. Not once. Be questioned.

I want that experience one day.

I don't want to 'be' them. I'm fine with the body and the work that requires my hands. I just want to experience a day where I leave my home without fear and with the expectation of respect from others.

I want to know what it feels like to take up space like I deserve it.

I want to know what it feels like to be on the street without the expectation of social violence.

Just for a day.

Or 8 hours.

Or 4.

I'm not greedy.

Because she expected respect, she walked with such dignity.


Tuesday, June 26, 2018

The Collar

Forever and completely alone.

That's how I'm seen.

Forever and completely alone.

The security guard at the museum approaches me in the children's play area, while I'm with Joe and the girls, and asks me what I'm doing there. I am out of place. A man alone amongst children. A disabled man whose behaviour might be unpredictable. He's nervous, the guard, not because he thinks he may be insulting me but because of the risk inherent in the interaction. I'm outraged inside but calm when I point out that I'm with the child hanging of my wheelchair. "Oh," he says surprised.

Forever and completely isolated.

That's how I'm seen.

Forever and completely isolated.

At the Pride celebration, twice. My wheelchair becomes stuck in one of the trolley tracks and two strangers converge on me. I am wearing a tee shirt which matches the tee shirt of the many and various people in our group. I am with my husband who was pushed aside. I am with Ruby and Sadie who are as wheelchair savvy as any two kids could be. The strangers begin to push and prod touching my back, my sides and my legs in the process. I say 'no' over and over and finally have to get rude and insist they stop touching me. Then Joe is able to help me and in seconds I am free. They look astounded that I, with my tee shirt matching many others, am not alone.

We are hungry. We stop for a hot dog. The sidewalk is congested with some going to the cash machine and some lined up for the hot dog kiosk. I tell Joe I'll wait on the street and watch people as they pass by. Moments after he leaves, a young man sees me see Joe as he heads off, but then throws his arms open, declares that no one should go without a hug on pride day and heads for me. I am polite, I say, that I'm good, I've been well hugged but I couldn't finish because he wrapped his arms around me. He work cologne, but all I could smell was the scent of pity. I pushed myself further out of the way, hiding from other people's needs.

Forever and completely lonely

That's how I'm seen.

Forever and completely lonely.

I have felt alone, and isolated and lonely. All of us have. But I am troubled by two things. People who support people with disabilities are surprisingly comfortable with lives lived in isolation. Alternately there seems to be a general stereotype that disability means loneliness and aloneness. I'm not sure about these conflicting views.

My guess?

Seeing me in relationship to those who love me is too challenging to the idea of disability as being a loveable state of being. Because if disability doesn't exclude love then the requirement of a fully functional heart is that it broaden to include all possible love. Love is restricted only by borders build through prejudice and preconception, truth can batter those down. So the truth of disability, that exclusion happens purposely, is something to be avoided.

I saw a quote recently:

Love has no boundaries ... unless I'm wearing that invisible boundary shock collar thing and then my love stops eight feet from the driveway.

Yes, I'm loved and lovable, fat, disabled, gay, old bald as I am, so ... take the collar off.

Monday, June 25, 2018

Value Based on Prejudice




Weeks ago Joe and I, along with Marissa, Ruby and Sadie, began planning to go to the Pride march in Toronto. The girls were excited, put super soakers in their hands and then give them a crowd of people to shoot at and they are happy.

But then.

We had planned to use a borrowed van for the event and suddenly that was no longer possible. Then, again suddenly, my power chair died. So we had no way to get the chair there, and even if we did, it wasn't working. I changed my mind about going but then, after making that announcement, I realized that my situation was affecting a lot of other people, so I talked with Joe, and we decided to go and I would use my manual chair.

I've never done the parade in a manual. I've always been in the big power chair. I knew that I'd have no problem doing the parade because it's mostly downhill. All I'd have to do is be sure to guide the chair properly over any rough pavement and turn around and back over the trolley tracks that I encountered. That would be the easy part. Getting back up hill to the car, that was another.

I made it back up, under mostly my own power, but that's not what  wanted to write about.

I found a very different reception from the crowd as I went down the street. In my power chair I got a lot of looks and some comments about my weight and the chair, mostly around being lazy. The stereotype that fat people who use mobility devices are all lazy sloths who let the chair do the work is a prevalent one. Just look up 'fat people on scooters' on google and you'll find the ha ha hilarious pictures taken of people like me, and in a couple cases, me, who are too lazy to walk.

This time, going down the street under my own power, I encountered very little of that, I got a lot more people calling out encouragement, and not a few feeling inspired. It was a much nicer experience as a marcher and as a person.

I should have liked it, and I admit to being relieved because I always hated feeling on display in the power chair, but it bothered me. I needed the power chair then, could have used it now, but circumstances combined with a decision put me there in a different mode of transport.

When pushing up and back, through the crowds at the street fair I got a lot of pats on the back, along with 'good for you' kind of comments. People could see me working to get back up hill, could see that I had refused help, and they assumed different things about me than they did before.

I'm not sure what this says about anything.

I felt more valued.

But I felt it was value based on prejudice.

It made me really uncomfortable.

Sunday, June 24, 2018

Toothpaste Pride

I love Joseph V. Jobes.

JVJ loves me.

And w have done for nearly 49 years.

This simple fact upset a lot of people when we established our relationship at the tender age of 16. It upsets a lot of people now.


We love each other.

We care for each other.

We support each other.

We still can make each other laugh.

We can still outrage each other.

We still hold each other, every night.

That's what the fight has been about. For us anyway. We wanted to live and love in freedom. We wanted to simply be allowed to get about the business of making a life together.

We were not trying to destroy the family.

We were not kicking at the struts of society.

We were not trying to normalize sin.

No, we wanted to be able to grocery shop together and talk about what we needed. Without harassment.

No, we wanted to go to a movie together and sit beside each other. Without harassment.

No, we wanted to live without lying about who we were to each other. Without harassment.

People hated us.

Really hated us.

Landlords wouldn't rent to us.

A house we wanted to buy was taken off the market.

Joe was hit by a rock thrown at an early Pride parade.

Just because we loved each other.

And shared toothpaste.

They hated us.

They called us queers, and faggots, and sissies, and fairies, and gearboxes, and suggested that we should be beaten to death.

WWJD? Hate us.


Why Pride?

Why the Celebration?

Well, because I still love Joseph Victor Jobes.

And he still loves me.

And we celebrate surviving another year.

Of sharing toothpaste.

Saturday, June 23, 2018

The Day Before

Today is the day before the big Pride march in Toronto. We are going down to join in the parade and we will march with Vita Community Living Services, the agency which employs me, the agency which welcomes me, the agency that respects my relationship with Joe. I can't express what that means to me, I will look around me at co-workers and members served by the organization and feel a shared excitement being there together. It matters that we are there. It matters that we publicly celebrate Pride. It matters.

I understand that it matters that everyone is there. I understand that every single person in that parade will have made a journey that brought them to be in that place at that time. I understand that the path we take towards self acceptance and expression of personal pride in surviving our own journeys will have all been difficult. Loving oneself is never easy. For anyone. Loving oneself when one is told over and over that one isn't worth love is nearly impossible. Loving oneself when you have lived with the lie that your heart, your very heart, doesn't work right is simply miraculous.

People with intellectual disabilities stand at the corners of sexuality and disability, of disability and intellect, of intellect and worth. It's a difficult intersection. Stepping off the curb and into life when the the curb was cut long after your sense of self took its first wound. I have been in a number of these parades with Vita's members and remember one fellow, crying, hard, as he walked down the street. People didn't understand. He simply couldn't believe that he was there. He took each step in a freedom that he never anticipated feeling. He took each breath understanding that he was alive, he was gay and he was free. His body had been caged in an institution, his mind had been caged in ignorance by others who denied education, his heart had been caged by a treatment program that sought to punish how it loved - but those cages, flew open that day, wide open. About three or four blocks in his hands flew to the sky and they stayed there, in celebration for the whole march. It. Matters.

It matters for every person in that parade who thinks that people with intellectual disabilities are not flesh and blood and do not have desires and needs. It matters for everyone who has a child or a sibling or family member who had until that very moment, when we in the parade pass by, had thought that they would never grow up, they would never love, our presence will say, 'We are here and alive and we celebrate our differences!'

The group at Vita that has worked so hard to organize this event are to be thanked, over and over again, for putting time aside to make this happen. This is more than a parade. It's an act of political rebellion. It's an act of defiance. It's an act that ultimately fulfills our mission, vision and values. We ARE community. We BELONG. We LIVE, LOVE AND LAUGH.

Pride is reclaiming the power we've had all along.

Hard as it is to say, knowing what this has meant to generations of people with disabilities:

Historically, outside of family, the only other person who would ever hold the heart of a person with an intellectual disability in their hands was a coroner.

Pride is more than reclamation of power, it's a determination that tomorrow will change because we have the power to change it.

It matters.

And because it matters.

We will be there.

Friday, June 22, 2018

I Don't Care ...

"I don't care what you think," I said.

I felt the power of those words, when spoken. The annoyance and even maybe anger was nearly overwhelming - I hadn't liked being told what I should do with my body and what the wheelchair was supposed to represent. I hadn't liked being followed in the parking lot as I pushed myself towards a park. I hadn't liked any of it.

I hadn't liked the gentle tone that he put into his voice as he gave me his advice. I hadn't liked the feel of his hand on my shoulder. I hadn't liked the look of concern he had on his face as he spoke to me. I hadn't liked his intrusion into what had been a lovely morning. I hadn't liked being diagnosed by someone who didn't even know my name.

"I don't care what you think," I said.

I had wanted to stop him. I wanted to stop the flow of words over me. I wanted to have him understand that what he was doing and saying was both meaningless and full of meaning all at the same time. I had wanted to go back to a place of peace on a beautiful day. I had wanted to resume my push through the lot, feel my strength and the roll of the chair. I had wanted him to stop. Just stop.

"I don't care what you think," I said.


I did.

I'm a human being. I'm a pack animal. I am influenced by those about me, even those who aren't part of my circle, not part of my group. I react when people give me advice about my body and my disability and my wheelchair. I know they know nothing about me, but it doesn't matter. I can't talk myself out of caring, even if it's just a little bit, about what someone says to me.

Words have power.

Too much power.

But they do.

I cared. That's why it matters what we say to each other because I believe very few of us say, "I don't care what you think!" and really deep, down. actually don't.

Thursday, June 21, 2018


What a night!

Joe and I were at a meeting in the community center in the area in which we live. We were both tired from the trip from which we'd just returned but we were looking forward to going to the meeting and playing out part in the life of this community. I hopped into my power chair, which I haven't used in weeks, and we sailed down to the meeting.

After the meeting was over I had to stay a little bit longer because I'm on the board and we had a few things to vote on. I turned on my chair to turn it around and it just died. Simply, quickly, died. So instead of me going down to the rest of the group, they shimmied down to where I was sitting. I was informed that the hall in which we had met was empty the next day so we could leave the chair there overnight if we needed. I was lent a phone to call Joe and ask him to bring my manual down so I could get home.

After the votes were over and we adjourned for the night. Joe came and we were trying to figure out timing we had a full day the next day. In both our minds we were worried about Joe pushing the chair up the hill to our place. The chair can be disengaged and pushed, but it's a big, heavy chair. Our first problem though was the fact that Joe had been unable to get the lever that disengages the chair and turns it into a push chair to work.

Just then I saw a young guy come into the community centre where this was all happening, he was called into the room and asked if he could help with the lever which seemed to be stuck. Joe showed him by saying, and showing, "You just need to do this," and with those words, the lever worked.

There were others around from the board meeting and suddenly discussions were happening about the chair and getting it up to our place. A women, with organization skills aplenty, suggested that Joe drive me and my manual back to our place and this young guy push the chair for us and meet us there. Joe and I protested and they protested right back, "Not a big deal," he said, "I'm glad to do it."

On my way out of the building I said to everyone and no one, "When you have something really shitty happen and then someone does something nice the world comes right again." And that's what it felt like. A crisis had been averted. There's still the problem of the chair but that now moves into a some "tomorrow" sometime situation.

We got home and he'd beat us there, it's a long push, and a hard push, but he was there with the chair. We thanked him for his help, he assured us that he was glad to help. And we were home.

When a community is a community, when a community lives up to it's potential as a community, everyone benefits. Joe and I, who strive to be self sufficient, sometimes aren't. It's nice to know that we live in a place where neighbours matter, where help is given because it's needed, where the principles of community are upheld.

We've never felt so at home anywhere in our lives.

Wednesday, June 20, 2018

One Boat, Two Women

We got on the boat from Nanaimo to Vancouver with our emergency flashers on and with a bright red wheelchair placard given us from the woman who took our payment and instructed us to put it on the dashboard. These things alerted the folks who load the boat that I use a wheelchair and to place us strategically so we would have maximum access. They have done this every time unerringly, frankly, they must hire people based on a Tetris aptitude test of some kind.

The fellow who spotted the lights came over and asked which side we needed room on and when we said, "Well, kinda both," he said, "No problem pull over here and I'll load some more on and then I'll tell you when to move ahead." The did as he promised and a few minutes later pointed to where we were to park. We were a couple feet back from the car in front of us but right beside a blue access symbol that lead to the elevator.

Joe got out of the car and found himself confronted by a woman in a car in the next lane. She was practically yelling at him to get back in the car and move it forward. Joe stated that we parked exactly where we were told to and that if he moved I wouldn't be able to get out my side and he couldn't get the chair out the other. She didn't care. She wanted the car moved and NOW! Joe stood his ground and she left shaking her head in disgust.

Normally it's me targeted with this kind of thing and while it wasn't nice for Joe to take the brunt of her upset, I was glad to be left out of it. He said, as I got in the chair, "You're the one with the blog, this isn't supposed to be about me." We laughed it off and headed for the elevator.

When we got there there was a family of four waiting. A mom, a dad and a boy and a girl both close to their teen years. I pulled in and sat back to wait, we were in no hurry, but then, the mother spoke up to her kids. "He," she said referring to me, "has the right of way here, we can all take the stairs." Then, they were gone. Just like that. Moments later the elevator arrived, empty and we made our journey up.

There's nothing so odd as people. We can never predict from whence will come the anger and from whom will come the kindness. It keeps us alert. Very.

But what's nice here is that that nasty woman yelling at Joe, she's going to be gone in a few months from our memory, she will just blend in amongst those who were and are similarly grouped tightly under the nastiness umbrella. But the other woman, will stay, I think I will remember her and her voice and her gentle urging of her family to move along and create space for us for a long, long time.

Beyond being kind.

What an inspired act of parenting.

And absolutely inspired act.

Tuesday, June 19, 2018

Aunt Vesta

Years ago my Aunt Vesta came to stay with Joe and I in Toronto for a little while. When we got the call that she was coming we were panic struck. We were not 'out' to many of my family, it was still in era in Canada where acceptance and welcome of gay people was not the norm. We had a one bedroom apartment. We lived in the gay area of the city. Most of our friends were gay. Even the art we hung on our walls were done by gay artists active at the time.

What were we going to do?

I knew Aunt Vesta from growing up. I knew several things about her. She had the best laugh. She was easy to be around. She was a patient listener and thoughtful in what she had to say. And, best of all, she had a wicked good sense of humour. This is to say, she was a nice person. But, we'd had 'nice people' turn on us instantaneously upon finding out that we were a couple. We knew that we couldn't predict how people would react. We knew that love of family isn't always there as greeting cards proclaim.


We had to tell her.

We decided to let her get settled in. Didn't want to tell her on the ride from the airport. The closer we got to the 'telling' the less we wanted to have to tell her. But it had to be done, there was no way we'd be able to de-gay our lives like many of our friends did when parents visited. While waiting to tell her I was reminded about how nice a person she was, how she was able to embrace us with her warmth. I didn't want to lose that, it was just too valuable.


We had to tell her.

We took her out for dinner, figuring a public place was safer, and we told her. She nodded after having heard our announcement and said, "... is this supposed to matter to me?" In six words she acknowledged us, accepted us and welcomed us into her heart. Then, we were done with it. Over her visit we went to gay bars, she insisted, and she charmed everyone.

Aunt Vesta, and her reaction, set her apart from so many people at the time. In fact, it sets her apart from so many people now. She had the depth of understanding that people were simply people. All different, all the same, all to be respected.

After she left we felt a hole in our lives.


There was something I had to tell her.

I hadn't been able to articulate to Aunt Vesta how much it meant to me, and to Joe, to have her embrace us and our relationship. I would have started crying and I didn't want to be maudlin. So I waited for a couple of months and then I called her and we talked about telling her.

I could tell that she was touched by what I said but I could also tell that she didn't understand the big deal. She didn't understand what a big deal it was to have a heart as big as hers was. She didn't understand that we'd been prepared for her rejection and what it was like to anticipate the worst but get the best of someone.

This is now Pride Week. I've been thinking of some of the people in my life who helped me along on the way to pride.

Aunt Vesta was one of those who stood on the side of the road and pointed to a world wherein it was possible to be loved, not tolerated, but loved instead of rejected. To a world where difference was just difference, nothing more, nothing less. To a world where one's heart was free to love as one pleased. I always knew that my heart loved differently, that's how people define who I am.

But it was amazing to see how Aunt Vesta loved differently too ... she loved inclusively.

Monday, June 18, 2018

From Us Gearboxes

Three flags flying in front of the Tyee Plaza in Campbell River. The tallest is the Canadian flag and then two flags of equal height, the LGBT2SQQ pride flag and the British Columbia provincial flag, are caught flying in the breeze.
When we drove into Campbell River on Friday one of the first things we noticed was a sign announcing a Pride Celebration. We went by so quickly that we weren't able to read the dates or times. We looked it up, kind of hoping it might be this weekend past, and found that it's happening next weekend. We were busy, getting into the hotel, arranging to see various and sundry family members and organizing our suitcases which had become a little dangerous to zip open and almost impossible to zip closed, so I didn't have a chance to think about the celebration and the flag, and we didn't have a chance to talk about it.

The next morning began with Joe and I heading over to the laundromat to do piles and piles of laundry. The web site had been wrong about the opening time so we were there an hour early. I rolled down to the flags intent on taking a picture. We both chose not to make it a 'selfie' because, well, we couldn't. Just couldn't.

I know we are told to live in the present but any thinking, reflecting human being knows that the present has echoes of the past that will reverberate into the future. Joe had been horribly bullied in school with a nickname so vile I won't even record here, except to say that it targeted his sexuality and his masculinity and his right to belong. I met Joe in CARIHI the high school here in grade 12, and that's were our relationship began.

CARIHI apparently has done things to be more inclusive to lgbt2sqq kids now, but, then, violence, social, verbal, psychological and physical were to be expected if we were ever caught. Other kids, the straight ones were dating and making very public displays of their love, their orientation and their expectation of welcome. Everywhere you looked the constant celebration of heterosexual pride and privilege was on display.

The most common word linked to homosexuality back then was one we still don't understand to this very day. It was 'gearbox' or more accurately 'fucking gearboxes.' People we knew, were never people who knew us, we couldn't allow that to happen, we learned to pretend in public and live in private, but those we knew threw that word, and others around all the time, fully confident that there were none of 'those' here.

CARIHI was a place of welcome for most and terror for us. There were so many ways to slip up. So many opportunities to be suddenly seen. Every single day, every single moment, was one of either fear or terror or anticipation of social violence. High school was a dangerous place, high school should have been full of memories - happy ones, not the ones we carry.

Campbell River, too, was a mill town. Men were men and, when people say that as a good thing, I tremble. Those good men would turn evil at the suggestion that a fucking gearbox might be in the vicinity. Campbell River did not value diversity in a variety of ways, and so we lived on the margins trying desperately to exist without notice. Our love made us vulnerable. Think about that.

And now, there's the Pride flag.

And now, there's a Pride celebration.

We're glad of that, the both of us, but ... how can anyplace embrace Pride without the acknowledgement that Pride is not something gifted by city council, Pride was something that people fought to have, in places like this, and against all odds.

How can Campbell River celebrate Pride now when in inflicted Shame then?

Where is the apology?

Where is the acknowledgement of the damage done?

If you actively participate in smashing someone's windows, you apologize and then you fix.

But if you actively participate in smashing someone's soul, you look up at a flag and wonder at how far you've come.

We both wish the citizens, all the citizens, of Campbell River a happy Pride celebration. However as people who come from before, we know your hearts, show us that you've changed. Not by flying a flag, but by acknowledging your history, and pledging, no more.



Sunday, June 17, 2018

Father's Day: Enough

Dad's not here.

It's Father's Day and this is the first one where he will not be in attendance. I've been thinking about him a lot because I've been seeing things in the stores that I would ordinarily buy and send off to him. But, not this year.

My father and I did not have a close relationship. He was very uncomfortable in speaking with me, so he typically said, when answering the phone to my call, "Here's your mother." We once had a fight about that, and as a result he tried to chat for a bit before turning the phone over but it was a conversation that came wrapped in discomfort and artificiality. I came to wish the fight had never happened and that the idea of 'trying' to talk with someone makes whatever said nonsense.

I visited a few times over his last months and the last time I was there, we both knew it was the last time. Joe and I visited in the early afternoon when no one else was there and I noted a subtle change in the room and with my dad. There was an intimacy and a desire for intimacy. It started with Dad telling us some stories from the war. Turns out my dad was one hell of a story teller. He was funny and had the gift of knowing when to pause and when to deliver a line. We laughed, loudly, listening to him. He was enjoying himself. There was no 'trying.'

When the moment was right, I decided to let go of this wrapped up thing I'd held in my heart for a very long time. There was something I wanted to say to him, something I wanted to thank him for, but it was so personal that I thought that I'd never get to say it. But I did. It took him by surprise, thinking, probably, that I only held anger in my heart with no room for gratitude at all. Then he said that he was pleased because I'd landed right. I was where I was supposed to be, doing what I was supposed to do and living with the man I was supposed to be living with. He called me lucky.

I don't know when he came to that realization, I don't know if it was the hours in the hospital that gave him time to think or if he'd been carrying that too. In the end, it doesn't matter.

What mattered was that I came to peace with my father.

When we left and said goodbye, we knew we'd talk on the phone, but we knew that we'd not see each other again. But while we were both aware that there had been a thousand and seven missed opportunities, we had come to peace.

And, in the end, that was enough.

Saturday, June 16, 2018

The Johnson Street Bridge

Yesterday I took a giant step towards being 'the guy' that I want to be ... in my mind. I'm not talking about 'THE guy' ... that nice, thoughtful and caring one that escapes my grasp so often, but the one who can physically push himself outdoors. I see wheelchair users sailing on their own steam up and down streets looking relaxed and fit and totally in control. Well, I'm no where near relaxed and fit and in control, I struggle and pant and sweat and occasionally curse. But ...

We were going out for dinner to a restaurant in Market Square in Victoria and I really wanted to push myself there and back. It wasn't a great distance from the hotel but it required pushing up a fairly steep incline, going over a walkway spanning Johnson Street and then over the bridge to the square. I'd looked at it several times over the day and decided that I was going to give it a go.

I suggested to Joe that we leave an hour early because I figured that it would take me a long while to make the push. The steep bits are, for me, quite steep. I wanted time to pause, push my lungs back into place and start again. So, we set off.

The first few feet were fine, but it was flat. Then started the climb. It got steeper and steeper and I went slower and slower. I didn't use my safety breaks, which allow the chair to go forward but not backwards, because I don't want to start relying on them. So I was pushing hard and grunting loudly and absolutely not caring what people might have thought. Joe stood guard to ensure that no one helped me. It wasn't much of a struggle as, it turned out, most people seemed to respect what I was doing and left me alone to do it.

Once over the walkway it was downhill until the bridge and the climb up the bridge once again slowed me down. But, again, I used every bit of power I had to make it up and crest that little hill and then it was easy to the restaurant. We were there in about 15 minutes. That was a shock.

With the extra time I pushed up Johnson Street to the first crosswalk and then headed back. I felt victorious but remembered that going back had the longer incline, though not the steepest. After a fun dinner we headed back and again, with one notable exception, people left me alone. I can't say how much I appreciated that. I knew I was going to make it and I didn't want someone to steal that from me but shoving me a foot or two.

On arrival back at the hotel, I was winded but not exhausted, I was sore but not really hurting. I silently thanked the gym back home where I work out and practice ramps. It was marvelous.

I know that I'm a long way, really long way, from where I want to be.

But I'm a little closer.

And that's worth something.

Friday, June 15, 2018

A Letter to the Snipers

Dear Camera Snipers,

Yes, I dared to be in public. And, yes I saw you see me. I saw your smirks, and grins, and pointed fingers. I saw you raise your phone and take pictures. All of you took your time, wanting a good shot. You knew I could see you. You knew I was trapped, unable to escape you. You didn't care about my obvious discomfort, my obvious lack of consent to the photo being taken. I saw you, all of you, take the photo, look down and scroll through the images, select a picture and send or post it somewhere. Probably with a witty quote about my fatness, my disability, my blatant, in public, me-ness.

I know that others will look at these pictures and laugh, maybe forward them, all of them feeling superior to me. None of them will wonder why you did what you did, why you thought it was okay, why you thought that your meanness was an appropriate message to send them. I am forever in that picture. I get it.

But here's what you don't get.

I got out of the car, I went where I wanted to go. I knew that you would be there. All of you. Not you exactly or you personally, but nasty people like you. You are not unique, even though you think you are, you are ubiquitous. Nastiness is not humour, even though you think it is, and for the millions who would agree with you, that I am worthy target of your humour, nothing separates you from them in my mind. I will not remember you as you, I will remember you as just another.

So I got out of the car and went where I wanted to go. When you took that photo of me, each of you, in rapid succession, you thought you saw a fat guy in a wheelchair. You got that wrong. Yes, I am a fat guy in a wheelchair but I'm also performing a radical act of defiance. I am there not despite you but to spite you. It's my way of saying, 'Fuck you, I do not give you the power to keep me locked safe at home and away from your gaze.' It's my way of saying, 'This is my community too you ignorant piece of shit.' It's my way of swearing and cursing at those would would objectify me, dehumanize me, and devalue me.

I am HERE.

I am OUT.

I am FREE.

Your weapons of social violence can't stop me. Your smirks can't stop me. Your cameras can't stop me. I protest you and yours, and all the other faceless, nameless bigots who think they are better because they can't really think at all.

I know what I'm doing.

I know that you took a picture of my defiance.

I know that someone will notice that I just stared at the camera. I didn't blink. I didn't look away. I wanted whoever looks at the picture to be confronted by my eyes.


Because you have a picture of my body. I have a picture of your character. And guess what? What I think matters too. You will one day look at that picture and see me. And feel shame. I may one day remember you, all of you, each of you, and see who you were in that moment.

I'm proud, in this case, to be me because I couldn't bear the shame of being you.

Your Subject,

Dave Hingsburger

Thursday, June 14, 2018

space and welcome

I was speaking at a conference over the last couple of days and I found myself in nearly constant awe in regards to how the whole thing was organized. Let me give you some examples:

1) there was a ramp to the stage in the room I was presenting in. A good ramp. One that had a flat entrance onto it ... amazing.

2) seats had been left available for wheelchair users in the room. This is a common complaint of mine, I go for training and have no-where to sit.

3) I'm given announcements to be made and one of them was to remind the audience not to take or use the accessible seating unless it was being used for the purposes of access.

4) There is a darkened room, and signs around it to be quiet and to not use cell phones in the area. It's a room for people to escape into the cocoon of darkness and silence just to get away from the noise and the lights and other things that cause sensory overload.

5) The accessible space actually was. Clearly they went to the site and checked it all out. Not a single barrier for me, not even the carpet, which was of the roll able type.

It's one thing to be greeted by organizers, it's another to be welcomed by the physical space.

It was a marvelous experience.

They got it right.

Wednesday, June 13, 2018

Eyes, Toilets and Teaching

I got glared at today.

I think I was supposed to feel badly.

The look certainly sent that message.

But I didn't.

And I don't.

I had gone into the toilet to use the accessible stall. When I arrived the stall was free but I had to weave around a man with an intellectual disability who was washing his hands. His staff was standing, leaning against the wall, watching and waiting.

The man with the intellectual disability did what a lot of people do. He noticed me, my size and my disability do seem to energize the lasers in people eyes. His eyes tracked me to the stall and now he was leaning over to watch me back my chair into place.

I said, "Please don't watch. Give me some privacy."

This is not something I say to disabled men, of any stripe or variety, it's something I say to anyone who presumes the right to watch me enter a toilet stall. It's weird. It's wrong. And it's unwanted. The fellow caught himself, muttered 'sorry' and looked hurt. Forgive me but I didn't care. People learn from situations like this precisely because there is emotion attached to the learning.

The staff however really cared.

Really cared.

He had stood up and stepped over and how he was staring at me with disapproval and displeasure as I was putting my breaks on, which I do just before closing the door.

His eyes called me names.

You could see that he thought I was a total jerk.

I wonder why he left the job of training to me, a stranger. Shouldn't he have noticed the intrusive behaviour and prompted the fellow to use appropriate boundaries? What if I had been a child going into the toilet under the unblinking stare of this man, do you think his father would feel comfortable with that? Come on, people are hired to do a job, so do your freaking job.

You don't watch people as they go into bathroom stalls.

You being everyone, not just people with intellectual disabilities.


Your job, as a direct support professional, isn't to stand by as a casual observer to intrusive or invasive behaviour. Your job isn't to minimize the actions of the person you serve because they have a disability. Your job is to provide support.



So do that please.

Monday, June 11, 2018

The Next Car Over

I saw them as I rolled down the cut curb into the parking lot. The rain had stopped and lots of people were taking the opportunity to get from the mall to their cars in the brief dry spell. They were full of energy, banging into each other with easy, friendly, affection - although they'd never call it that. The oldest might have been 19 and the youngest about 16. The five of them talked and laughed and looked like a great bunch of boys.

Then as I neared the car, I saw them all piling into the car next to us, also in a disabled parking spot. One of them noticed me, said something to the others, which sent them all into a giggling fit. Like they'd been caught by a teacher doing something unspeakable to a frog. My mouth dried up. I was angry. There were, and had been, lots of parking spots that were close, they didn't need to take up a disabled spot.

I pulled up beside their car, and said nothing.

Because I was afraid to.

I am disabled.

I may have a voice.

I may have something that needs to be said.

But I am also vulnerable.

And, so, silence.

They backed up, still laughing, one of them pointing at me, reduced to gestures because he was laughing so hard. Ha. Ha. Ha. Caught by a cripple in crippled parking. They thought it funny and they knew me to be an impotent force. They knew that their youth, and strength and mobility, which I had not seen as threatening, now was. They knew I would be silent. They knew that I would simply watch them drive away.

Which I did.

My life with a disability is one that I find precious - it's way better than the death that people claim they'd prefer - and it's given me the opportunity to learn and grow and confront parts of myself. I life a free life, I'm miles from home. I'm working tomorrow. I have purpose.


There are times when I find myself frustrated, not by my cowardice, but by my need to be so. I find myself holding back when I know my voice is needed. They needed to hear me. They needed to know what it meant to rob people of access and opportunity. The needed to learn from me.

And they didn't.

There's a tragedy there.

And a humiliation.

Sunday, June 10, 2018

Bright light, Dark Room: Let's Have a Discussion

Yesterday we went to see a movie, 'A Quiet Place' at a theatre near the hotel we are staying in. The place was old and ill designed. The wheelchair space at the very back, at great distance from a small screen, had no chairs for anyone without their own. The one wheelchair space at the front, we discovered when looking for a way to sit together, was beside a seat that had been ripped apart. The long push back up to the isolation area was steep and hard, I made it almost to the top but needed help for the last couple of feet.

So I sat beside Joe and we decided to just cope. Just before the movie started a mother and three children came into take their seats at the end of the row in front of where Joe was sitting. There were, mom, daughter, son, daughter arranged in their seats. They were surprisingly noisy just settling during the start of a movie that uses silence as a tool for story telling. But they did come to complete silence about 5 minutes in.


There was a lot of movement. The son kept getting up and going to the seat at the end of Joe's row and directly behind his mother. Then, when things got scary, which came early and often, he'd scoot back to his seat between his sisters. Finally he settled for a long time at the end of Joe's row. He had a cell phone out, looking intently at the screen completely still, the stillness interspersed with rocking.

I hate the bright light of a cell phone in a theatre. I thought about saying something because I always do, 100% of the time, but I didn't. It seemed to me that he had some kind of cognitive difference and was using strategies to be able to stay in the theatre, watch the movie with his family, and enjoy all that comes with that. It was clear he was watching the movie because when the intensity built he'd be back in between his sisters. Every time.

To me the cell phone seemed to be like an assistive device for him to use, phone for him, wheelchair for me. Because of that, because of how it seemed to be used, I felt that I had no right to speak up. He had as much right to see the movie his way as I did mine.

Oddly, when talking to someone about this, I was told that I had lowered my expectation for him based on a perceived disability and that was doing him no favours. He needed, I was told, to learn how to be in public without disturbing others. A behaviour plan would probably help him enormously, they said.

I don't know. I don't think I lowered my expectations, I felt that I altered them. If he copes in a particular way, who am I to say that he can't use that strategy. I fight for MY access to public space, what if his cognitive ramp is the cell phone and a bit of rocking? Isn't accessibility defined differently by different people?

I don't know. But I do know there is strong opinion around this. I'd like to hear what you have to say about this, but please say it kindly ... go ahead, over to you.

Saturday, June 09, 2018

yellow tears

There was just one. I rolled up, tried the door, found it locked, and then I pulled back and began to wait. I knew that the person in the accessible toilet knew I was there because the handle had shook when  I tried it. I counted that 67 people came and went from the toilets as I waited for the one that I could use.

I tried the door again, wanting to signal that it was what it was, urgent. The words were unclear but the yell was not. The second try had annoyed whoever was there. Finally when he came out, he was a tall, thin man in his 30s with no disability at all. Not even an invisible one. In the apology that tumbled out of his mouth he mentioned that the didn't have a disability he just liked the space and he rarely sees someone like me use them. I glared but didn't cry because I had to go so bad, I feared yellow tears.

Then he decides to help me by holding the door. This guy who had a lot of options had taken my only option and stayed in there while 67 other people had been and gone then left. I told him I could do it myself. He insisted. He was going to make up for his behaviour by inflicting me with guilt tinged help.

Not this time.

I told him I'd piss myself before I took his help.

"I didn't realize ..."

"Yes you did and you did it anyway now get out of my way."

Flustered, he left.

And I went in and peed.

That, in a nutshell, was my day.

Friday, June 08, 2018

I Diversify

I avoided that corner of the store completely. I'd seen it of course, it was hard not to with them all either raised high or crouching over there, many looking ready to pounce. They weren't going to get me, that was for damned sure. But as we went round the store with a clerk helping us with an enthusiasm that was a little off putting, we got closer and closer.

I'd point to this one or that and the clerk would snap out the tape measure and measure the to see if it topped 21 or if it came in under. He had an odd way of taking the measurement, he'd get the tape in place and then bend from the waist down to see the result, he looked as if he'd been cut in half each time, why he didn't crouch I don't know.

Finally, it was time.

We looked at a model that was crouched and the controls were handed to me. I raised and lowered, raised and lowered, set on crouch and then tried another. Finally I came to one that I thought looked comfortable and maybe, just maybe, would work for me. I had come in determined not to get one. I had classified them as for 'other' disabled people, not for me. But, I might have, I thought, joined another demographic.

Joe and I talked about it and the clerk left us alone. I got out of my chair, sat down in the lazyboy recliner with the electric assist lift function and then let it get me up enough that I could stand easily. I don't stand up well, I often lose my balance, I often struggle, even on my chair on blocks at home. You read that right, chair on blocks, don't judge me.

This new chair was a comfortable sit, it comes in under the 21 inch level I need for getting up, but with the push of a button it lifts me there, and, okay, it reclines nicely. 

I didn't want to buy one.

But, I'm going to.

When we get back from this trip we are getting rid of my old chair, the blocks it sits on, and install this mechanized beauty. 

Yep, I have a brand new identity.

Here's to diversifying, yet again.

Thursday, June 07, 2018

No Explanation

There is no explaining how it feels

To look forward to an event

An accessible event

And arrive to find

No access, no welcome


It just becoming

A quiet drive home.


A dawning realization

That it continues

Without me.


How unnecessary I am.

How is it


isolation is so

incredibly well ramped







Wednesday, June 06, 2018


The tires on my new wheelchair are air filled. This is new for me. My old reliable chair, which I'm sitting in now as I type, had solid rubber tires. I was wary of the new tires because I could just picture what a flat would mean, the trouble it would cause, and the idea makes me sweaty with anxiety. Nonetheless, this is my new reality. The chair is, increasingly, wonderful to push and ride in as I adjust to it, but I now need to adjust to the tires.

I noticed that I would probably need to put air in soon. We headed over to buy a bicycle pump and were greeted by a young man who simply had no idea about pumps for either bikes or chairs but did know who to ask. Another fellow came and I explained that I needed a portable pump because we travel a lot and I needed to be able to pump up the tires on my chair.

It was so weird because, firstly, the guy had trouble talking to me and looked mostly at Joe (well, that's not so weird) but secondly, he couldn't bring himself to mention my chair. He kept talking about bikes and pumping bike tires, talked about being an avid bicycler himself and the situations he'd gotten into with his bike. I wanted to be sure, absolutely sure, that this pump would fit my chair wheels. I was told they would by the folks I bought it from but I wanted the store guy to confirm.

He heard my question and said that the pump would work with any bike tires, I told him that I wasn't sitting on a bike I was sitting in a chair and I wanted to know if I'd been properly advised about the tires. Nope, couldn't do it, it was back to bikes and bike tires and the whole shebang.

We bought it.

I know that we should have gone elsewhere but we've been traveling a lot, and we're feeling a bit old and frail, and we have to fly again in a couple of days, so we just bought it.

Sometimes we don't feel like protesting.

Sometimes we just put up with less than the best because we don't have time to search for the even barely decent let alone the best.

We have a pump.

And are working up the courage to try it.

On my bike wheelchair.

Tuesday, June 05, 2018

Yeah, This Happened

Yesterday I went to a new grocery store feeling a sense of 'so there!' to the place I've shopped since moving to Newmarket. My former store was one I liked, and is closer, but as much as I tried I couldn't get them to take even the most minimal action to make the store accessible to me. Most of the requests were simple, so simple it was inexplicable to me that I had to even ask. All of the employees, from store clerks to managers said they 'understood' but understanding never translated to change.


One day.

I was done.

So I rolled into a different place prepared to give them a shot. Joe and I agreed that if there were issues with accessibility, we'd give them a chance to fix it and see how they did, we wouldn't react at first shot. And, predictably, there were issues. Primarily the issue was the only lane that had an accessibility symbol was the one with limited items. No way Joe and I can eat for a week on 8 items or less.

I asked to speak to a manager and discussed my need to be able to shop and pay and be able to do so without impeding others or getting special dispensation to use the limited item aisle. He told me that there was another accessible aisle and pointed it out to me. I asked why there wasn't a symbol there letting people know. I said that it was great that he told me but what about other disabled shoppers, should they have to ask?

He said that he understood and would do something.

It might have been rude but I told him that people always say they'll do something and then don't, was he one of those or could I could on change.

He said he'd do it.

Okay, then, I thought, we'll see.

We got in the line up at the accessible till and waited. Just before we started unloading he was back, he'd discovered that they'd actually had an attachable symbol and in a couple of seconds and a couple of clicks, it was install.




I am now a loyal customer.

Monday, June 04, 2018

Personal / Political: Feeling a Little Lost

I've been taking our travels, and all the time I have in my new wheelchair, as an opportunity to practice my outdoor pushing. This means, for example, pushing from the parking spot to the hotel rather than being dropped off at the front door. It also means seeing a funky looking coffee shop across the street and instead of driving there, rolling over and back.

I admire wheelchair users who push themselves outside. I know the skill and the strength it takes. Sidewalks all being built angled, driveways at even steeper angles, pushing one wheel to propel and holding the other wheel so the chair doesn't do what gravity really wants it to do and plummet down the slope. I see other wheelchair users doing this such that it doesn't look like work. When I do it, it looks like work.

But I've set a goal for myself of pushing further and further outside. When in Vancouver, I'd like to do the sea wall. Joe and I used to walk there, and we always had the best conversations when we did so. I really want to do that again. I had thought it lost to me, but I'm figuring the wheelchair and stronger arms and more skill may have made that thought premature. So, I'm aiming to do that later this year.

I'm also fighting with myself over pledging to do a 5k outdoor marathon. I'm told the track is wheelchair friendly, I'm told that, for a 5k, it's a gentle one. I'm almost there with the decision but I want to wait until we're travelling a little less so Joe and I can go there and give it a shot, do a kilometer or two.

Someone asked me, another wheelchair user actually, what I was trying to prove by doing these things. I hadn't thought about these goals as political, only personal. I hadn't thought that these goals might be seen as critical of others with disabilities. Not at all. And I confess, I still can't see the issue. My goals are my goals and they are very personal and specific to me. I don't feel that I'm trying to prove anything to anyone but myself.

I've always been sedentary. Always. As a child. As a teen. As an adult. Disability or no, my tendency was to avoid physical activity. For some reason in the last couple of years that's changed and I enjoy feeling my body work hard. Part of this is because I figured that if I wanted to continue to travel and lecture, and I do, I had to increase my physical strength. I had to take the strain off of Joe and take it on myself - he has enough other stuff to carry and deal with. But mostly, I started, and enjoyed, the way working physically took my mind off my work and my worries.

So, now I'm wondering if I should even be writing about my adventures as a physical being pushing my own chair. I know my intent in talking about this is to document, for myself, and for those interested, my life as a disabled man - but does my privilege as a man who can push his own chair make me unable to see what my own posts are saying.

I don't know.

Sunday, June 03, 2018

Compassion Failure


Real Compassion.

Is hard work.

We were on the plane ready to fly home. It was the first flight in the morning and we'd gotten up very early to ensure we got there with time enough for things to go wrong. That is our strategy, it works for us. But by the time we got boarded and the plane was ready to take off it was only 7:30 and we'd been up for hours. But we pulled away and we relaxed knowing that we'd be home soon.

The plane got in position for take off, which took some time because there was a line up of planes flying out, and we heard the captain come on the PA. Oh. No. We were told that there was a passenger having 'some medical issues' and we'd have to go back to the terminal. The whole plane, every single passenger, sighed. We were going to be leaving late, connections were going to be missed, the flight just got a little bit more unbearable.

We got to the gate and the passenger disembarked, there was some paperwork to be done, and then, we were ready to pull away from the gate. All of this added about 20 minutes to the flight. The line up and re-positioning for take off was another 15. Then we were in the air headed home. I was sitting there with a little bit of resentment, a little bit of annoyance, a little bit on anger rolling in a solid ball of selfishness in my stomach.

Not once during that time did I ask myself what it must have been like for the passenger to need to return to the gate, to seek immediate medical attention, and to miss the flight entirely. In fact I knew I wasn't asking myself that question because I didn't want to.

I didn't want to do the work of compassion.

I was tired.

On top of that, I kind of felt that my compassion, if I had engaged with it, would have been fruitless. What would the passenger know or care about how I felt about the whole ordeal, for them, for me? Why does it matter that I engage with empathy, that I put caring into operation? Why start up the machinery of compassion when there was no heavy lifting to be done?

It wasn't until I got home, after having told the story of the delayed flight and my annoyance about it to a couple of people, who all got why I was feeling what I was feeling, that I realized that my compassion did have work to do. Firstly, showing compassion in a situation where it isn't needed for another is worthy because it's needed for myself and for my own peace of mind. Secondly, I was modelling for others that the correct response to another's distress is annoyance. 

And it's not.


I got it wrong. I'm fully human and alive to the fact that I am more easily moved to judgement than generosity. Yes, I get it wrong. Yes, I got it wrong. Ultimately it does matter to the passenger who got off the plane in medical distress because we both live in the same world, and we all have the ability to directly or indirectly affect each other just by the attitudes we carry.

I hope the passenger who got off is well.

I hope their next flight went smoothly.

I hope they know that the delay they caused, ultimately, did no one any harm at all.

Saturday, June 02, 2018

no status

Several times on this trip I discovered that my "no," even firmly said, held no power. This was my first trip, by plane, in my new wheelchair. I'm adapting to the chair, it's quite a different 'push' than my old chair and I use different muscles in my arms and shoulders. This means that I a working a little harder, on inclines, as I develop the new stroke and increase the strength in those muscles. On a flat surface, I use very little strength, the thing flies.

This has meant that people do see me struggle a little bit more when I'm going up hill. Now to me it's really important that I not take help. I HAVE to develop the strength. I HAVE to work at it until I've got it right. I HAVE TO. This is about my body, my future and my mobility. I don't want to passively accept help when I can actively do it myself.

On the way to the gate at the airport yesterday I was asked, by someone coming from behind, if I wanted help as I pushed up and long, carpeted, incline. I said, 'No, thanks,' and suddenly I was grabbed and pushed. I screamed, 'I said NO!' and then watched a really angry person walk away.

That was one of six or seven times that happened over this week away. I'd say no and people would come at me anyway. I'd have to get a little aggressive, and that still wouldn't work. My 'no' had no power. Living in a world without the power of 'no' is scary. When Joe would intervene, which he did several times, and say, 'He's okay,' or 'No he doesn't need help.' THEY WOULD LISTEN.

Joe wanted to always be behind me to protect me from those who assert their 'yes' over my 'no' but I asked him not to. I need to develop those muscles too. I need to be heard.

Why is a 'no' from a disabled person not equal to a 'no' from someone else?

I know that I'm seen as 'unnecessarily brave' .. how do I know that, I've been told that.

I know that I'm seen as 'inspirational' ... I've been told that too.

I know that I'm seen as 'denying the reality of my disability' ... I got a mini lecture as I tried to stop someone from touching me and my chair.

What I'm not seen as is powerful.

What I'm not seen as is capable.

What I'm not seen as is equal.

I teach people with intellectual disabilities to say 'no' to assert themselves. I did that on this trip. But now I'm thinking that maybe I have to revise the training. Maybe I have to be clear that 'no' is just one of many strategies. I do already teach what to do when 'no' doesn't work but they all involve reporting to others in authority.

But if our 'no' doesn't matter, it's violation isn't a crime.

Maybe that's where it all begins.

I have some thinking and some curriculum changes to make.