Thursday, May 31, 2018


We were uncomfortable straight away.

Only minutes after seating ourselves in the restaurant, we started wishing we'd ordered room service. We never go out for dinner, well, maybe not never, but rarely. We are tired at the end of a work day and like to tuck ourselves away from the world. But we'd seen the menu, which had actual choices for vegetarians, and the pub itself was cool. So there we sat.

There were two staff on when we arrived. A man, maybe in his later 40s and a woman in her mid twenties. The man was clearly the person in power, we never found out if he was the supervisor or if he was the kind of guy who just assumed power, then used it, then abused it. He was horrid to her, passive aggressive and critical, making her work life hell.

She was serving us and at one point I asked for some more hot water for my tea. She did this, willingly and brought it back to me, telling me to just ask when I wanted more. He walked by looked in my teapot and made a comment that she hadn't filled it properly and grabbed the tea pot and went and got more water, filling it to the point of being too full. I told him it was now too full and he brushed that away saying that I'd be find with it.

At one point he came behind her as she was working and poked her from behind under the back of her arm pits. She was startled and pulled away. He did it all 'laughing' because he was 'such fun.' Then another staff came on a young man around the age of the young woman. The waiter started 'bantering' with him saying that some other staff in the hotel had started dressing like a 'ho' in order to get his attention, he was clearly flustered and embarrassed but the older waiter didn't stop he went on in this vein about this 'ho' of a woman.

He touched the male waiter too, he came over to him, spread his hand wide and laid it on his shoulder such that it wrapped around the young man's shoulder and his middle finger touched the bare skin of the waiter's neck. He didn't belittle the young man in the same way as he did the young woman, but it was clear he was the Alpha waiter.

We didn't know what to do.

But it was clear that he didn't care that we saw, he expected and anticipated our either indifference or our silence. He was free to prey in public view.

After we left Joe and I were determined to do something.

The following day we made an appointment to speak to the manager. She agreed to meet with us first thing in the morning and we sat down and gave her a full accounting. She looked shocked. But she listened hard. She promised that action would be taken.

We need to ensure that those who abuse others can't count on public silence. It doesn't matter that he's not a movie mogul, it matters that he created a toxic and harassing environment around him.

I am not powerless.

Neither are you.

Monday, May 28, 2018

What Happened and Why

I had the oddest experience the other day. I was in a grocery store and had been unable to find what I was looking for. Joe and I went looking for a staff. We saw a woman off in the distance giving directions to someone else and appeared friendly in doing so. So we approached her, we told her what we were looking for and she stood looking, staring really, at me frozen. Then she started taking us to where we needed to go, she refused to walk beside me, she refused even any verbal chit chat.

I had seen her quite comfortably talking to the person who'd approached her before me, I had seen it, I know I did. I looked at Joe who just shrugged his shoulders, she was really, really, rude.

We got to where we were going and she just pointed at the item and walked away.

This was a woman with both a physical and intellectual disability. This was a member of my community. She had just demonstrated her comfort with interacting with the non disabled before showing me disrespect. In fact, as she walked away, she was stopped by another shopper with whom she chatted and it was obvious they were simply saying hello.

This has happened before, other people with disabilities being uncomfortable with me and my disability. I don't know what it means.

Are they simply, deeply, prejudiced against others with disabilities?

Do they worry that our disability with draw attention to theirs?

Is this bone deep internalized self hatred and ableism?

I don't know, but it kind of hurt. I don't expect to be embraced and given extra special treatment from an employee with a disability but I do expect the same as they give the non disabled.

We got what we wanted and left.

And I'm still trying to figure out what happened and why?

Sunday, May 27, 2018

The Inspire Awards: the complete speech

Below is a transcript of the tape that was made of my speech at the Inspire Awards, given out by Toronto's LGBT community, at the ceremony on May 5th. The beginning and ending are from memory, which is unreliable, the middle is from the portion of my speech that was recorded.

(Joe assists me with getting to the stage area and returns to his seat as I start.)

That lovely man you just saw up here is my husband and next year we will celebrate our 50th anniversary. (applause)

It's wonderful to receive applause now but back then was a different story. Our relationship was vilified. Our love held suspect. We lived our lives in silence carefully moving the the world outside our home.

And then when I stepped into human services I saw what happened when tyranny, when tyranny, weaponized disapproval. Because what happened to people with disabilities regarding their sexuality is simply unconscionable. We used torture as best practice. We took cattle prods and burned their skin, we shot lemon juice into their mouths. I met a little girl of 8 years old, with Down Syndrome, and in order to stop her from masturbating her therapist had said that they should shoot lemon juice in her mouth every time she touched below the waist. She had scars down both sides of her mouth.

People with intellectual disabilities have never been seen as truly human.

People with intellectual disabilities have never been seen as truly adult.

And people with intellectual disabilities have never been seen as capable of loving and of loving other people.

And you know in my work with people with intellectual disabilities, and the journey that we have had, we have seen remarkable progress but we still live in an era where the civil liberties of people with intellectual disabilities are not governed by law, they are governed by boards of directors of agencies and from one mile to another a person with a disability can lose all their civil liberties simply because of the disapproval of others.

When we first began the journey, and I first started speaking out about the rights of people with disabilities to be simply sexual beings, and that they had both genitals and heart, I faces fierce opposition. The books I wrote were burned, I was called a pornographer, I was banned from speaking in Oregon, and received death threats in Canada.

But I'll tell you this. I am different, and I know I am different, I'm fat, I'm gay, I'm disabled, and the experience of difference is a wonderful thing because it gives us a well spring, it gives us a well spring of anger, and it gives us a well spring of hope and it gives us a well spring of justice. And if we use our difference properly we will use our voices well. And we have the responsibility, each one of us, to use the voices that we were given, to discover what difference means to us, to discover what we have faced as human beings and understand that it's not okay. It's not okay for people to live in spaces where they are not safe. It's not okay for people with disabilities to be judged differently because they live and move in the world in different ways. We need to understand that the gay community, the LGBT community, is a very large community, and people with disabilities are members of that community. People with disabilities have got a right to membership, in this community. I so often sit at the intersection of disability and sexuality and watch the parade go by because there is no cut curb.

Thank you for this award and thank you for acknowleging, in giving it to me, that the lives of those of us with disabilities, particularly those with intellectual disabilities, are of importance to you and that the LGBT community will work to confront prejudice and inaccessibility so that all of us can participate and all of us can contribute.

Thank you.

Friday, May 25, 2018

One Minute

Today I will be receiving a lifetime achievement award at the "Inspire" ceremony here in Toronto from the LGBTQQ+ community. It's for my work regarding sexuality, adulthood, and self advocacy with people who have intellectual disabilities. I feel humbled by the award and challenged by the fact that I have one minute to speak after receiving the award.

One minute.

Should I mention the time I was called a pornographer for producing information and materials on sexuality and masturbation by newspapers in Maine?

Or when I was banned from speaking by several organizations in Oregon?

Or when my book on sexuality and adulthood was burned and the ashes sent back to me in the mail?

Or the death threats that resulted from some on air work here in Canada?

Sometimes it's fun to look back and this occasion has me thinking through how upset people were about ideas that I'd present which are now, pretty much, standard practice.

I remember being screamed at by a man who, in an Ethics of Touch training insisted that I was perverse because I was sexualizing the fact that he allowed and encouraged the women in his group home to sit on his lap and rub their back to calm them down.

Or the woman who was so angry about my comment that staff are not friends that spittle flew in my face.

Or the group that accosted me at break time about my sexuality presentation which included a section on the rights of LGBTQQ+ people with disabilities to respectful support, I can still here the "God kills fags and PRAISE HIM for it" ringing in the ear. I still remember the organizer bringing security into the room for the rest of the day.

But as I thought about what I could say in one minute, I decided that this stroll down memory lane isn't really what I should say. I think I'm going to ...

(to be continued)

Thursday, May 24, 2018

This Is You, Man, You

Okay, this is a subject I've written about before but I'm going to take a different turn in the telling. We arrived at a hotel with a booking guaranteeing an accessible room and there wasn't one. The clerk, handed me a key to a room, not telling me that it wasn't accessible, even though I'd asked. I was suspicious because he hadn't answered my question so I asked again and was told that it wasn't an accessible room. It all got worked out but ... while it was working out I sat there wondering. If you forget the reservation, the guarantee, all that, how could he do that to another person. Human to human just send me to a room I couldn't use. What did he think was going to happen. So, when I had a key to an accessible room, I don't know what magic was worked to find me one, I said to him:

"Can I ask you a question, person to person, human to human?"


"How could you hand me keys to a room I couldn't use and keep silent about the fact that it didn't meet my needs for accessibility? How could you do that to another person?"

"I didn't mean to dehumanize you."

"You didn't dehumanize me, you dehumanized you. Aren't you worried about that?"

"I didn't have the room you requested."

"No, I'm not talking about that, I wonder if it worries you that you could do that to another person?"

"I'm sorry, sir."

There was no oomph in his apology and I don't believe he meant it much.

But, for the first time I really wondered about and worried about the person and the people who can so easily do that. What makes it possible for someone to simply dismiss another person as being real.?

I don't know.

As I rolled to the elevator, he started to explain again about the room and I said, "No, man, you need to get this, this is about you, man, you."

And I meant that, and believe it or not I thought and think that I was performing an act of kindness. I don't know if you'll all agree or not.

Wednesday, May 23, 2018

Does It Matter?

Does it matter that I have a disability?


It does.

People keep saying that they don't think of me as disabled.

Even though I am.

People keep saying that they don't see me that way.

Even though I am, quite visibly, disabled.

People keep saying that I shouldn't speak of myself that way.

Even though I am sitting in my chair while we talk.


People don't understand why I bristle at the idea that they are complimenting me.

Even though it's clearly offensive to tell me I'm not what I am.

People don't understand why I state that I am proud of my status as a disabled person.

Even though they understand pride in virtually every other person.

People don't understand why the conversation turns sour when they are being so sweet.

Even though it's not 'sweet' to kill off all the words I use to speak of my self.


I need those words, the words they want to eliminate, expunge, euthanize, to make my experience real. I need those words to explain my place in the world. I need those words to reify my history and my present and my future.

I need to speak those words.

I need those words to be heard.

I need those words fully scrubbed. Bright and clean, free from shame.

I am disabled.

Without contradiction.

I need that word to describe who I am.

I want to exist in language.

It is not a gift to eliminate me.

Word by word.

Taking my power and my experience and my history from me.

I am disabled.

Whether you see it or not.

Whether you think of it or not.

Whether you speak of it or not.

I am real. My experience is real. My community's history is real.


Without need for your permission.

Tuesday, May 22, 2018

And Then I Didn't

While Joe was getting his hair cut I was wandering around the store. He takes much longer than I do and I fill that time by browsing. I was rushing back to the hair cutting place when I had to come to a stop because there were two people who were blocking the pathway. The aisle had been narrowed by a display but there was plenty of room for them to just step a little to the side to let me pass.

They saw me but didn't move. I asked them, politely, if I could get by. They looked at me like I was shit on their shoes and carried on chatting indicating that this space belonged to them, not to me or those like me. They were those that the whole world was in the realm of 'mine not yours.'

I took the time to look at them, recognizing that books can't be judged by the character of the person carrying them, and saw two studiously 'cool' people. Great hair cuts, hers a deep burgundy and this tinged with a cobalt blue were star attractions but their clothes were funky in an expensive kind of way. Their who presentation screamed, "We're kooky and we're kool and we're the kids to know!"  They'd worked hard at their look.

Tick Tock

I needed to get by, there was no other accessible way to the barber's so I asked again if they could just make room for me to get by. Again they looked down on me, both literally and figuratively. Then, I spoke, having had enough time to think, "You know what cooler than you? Kindness. You dress well but you're just assholes in costume." And then I started to push and they were require to move.

They called me a name or two.

I said, over my shoulder, "Thanks for proving my point, bullies never really do grow up do they."

The bully comment hit, probably harder than I'd intended. They look mortified and angry and fled the scene of the 'mine.' I felt a twinge of guilt, and then suddenly, didn't any more. I tire of the burden of caring for the feelings of those who care nothing for mine.

Sunday, May 20, 2018

Understanding and Accountability

I keep getting told that it's "not prejudice."

I keep getting that patient voice explaining to me that prejudice as a motivating factor is just in my mind.

I keep having explained to me that, essentially, there is no such thing as prejudice against people with disabilities.

After shopping for groceries in my local store, I once again found that the only two aisles that are wheelchair accessible have signs up stating that they take customers with less than 12 items. I have had this discussion with the store managers and supervisors several times. They all claim to understand.

This is crucial.

They all claim to understand.

They all claim to see my point.

This is equally crucial ...

... they all claim that they will do something about it.

So, after being away for a couple of weeks we went grocery shopping yesterday. It was nice to do something so entirely normal and homey. But when we went to pay for the groceries, we encountered the same problem. We had a bunch of groceries, WAY more than 12 items and the two accessible cashiers were designated for those with very few items. We went to one of them anyway and were immediately shooed away by the cashier.

I started making some noise asking where the hell I was supposed to pay. One of the senior staff came over quickly to take down the 12 item sign so we could go through. And there's where the clash occurred. We've spoken before, she and I, several times. I was fed up and tired. I challenged her and the store about blatant prejudice against disabled people as welcome customers.

"I'm sorry you feel that way," she said before beginning to explain that this was my perception but not fact. She was snippy and curt.

Not fact.

No accessible lane for wheelchair users to pay for purchases.

No sense of respect for my frustration.


They knew.

I've talked to them before.

And they claim to understand.

So if they understand they are purposely ignoring the situation and have committed to a path of doing nothing and making no change.


Well that's it for me.

Joe readily agrees.

We are shopping somewhere else.

I had thought that I could bring about change.

I can't.

Because the understand but don't.

And that's sheer bigotry and prejudice.

Saturday, May 19, 2018

Where He Is Free


Our flight home. Our waiting rental car. All went as they were supposed to. The traffic was heavy because of the long weekend but we managed to survive it all and arrive home. We came in and immediately felt embraced. We knew that this space was ours and that it was tailored to our taste.

As I was rolling through the door I remembered speaking to a man with a similar disability to the one I have. I remember him speaking of living in a nursing home because of a lack of access to an accessible living space and the supports that he needed to live freely. He was a few years younger than me. He had about him a resignation to his life that came from exhaustion from fighting for so many years, he wasn't resigned from the start he told me but his dream of a home, a place of his own, had slowly slipped from him.

He said that he once hated where he lived, but that had led to a deep bitterness which took away all joy. "This," he said, putting his hand on his chest, over his heart, "will always be free even if I never am." I got teary at that point and he made an apology that I brushed away. I told him I needed to be reminded.

That people still yearn to be free.

That people still wait for a just life and a fair shot.

That people live in captivity jailed, not by bars, but by indifference.

I come into my home, from a lengthy trip on the road, of two weeks, and I feel a warmth in my gut at coming through the door.

Two weeks.

Just two weeks.

And he, for years and years, is still away from his home - the one he has in his mind.

We are so not done yet.

Not. Nearly. Done.

Friday, May 18, 2018

Travel - Disability - Making it Work

Okay, we fly home tomorrow. As you read this we will be on a plane flying towards Canada. One we land it's about an hours drive home, depending on traffic, and then we sail in to the long weekend. We're tired from the trip but as always grateful to have had the experiences we've had. We found that our past experiences of travelling with the wheelchair led to an error free experience (but we haven't flown yet) in terms of the hotels and venues where we stayed and worked. Planning works.

Being disabled makes things more complex, not more difficult, but more complex. It takes much more thought and much more attention to detail and doing a lot more double checking. This time every hotel we arrived at had an accessible room waiting, every place we went to see, visit or shop at was barrier free. This meant that we had to stay at particular hotels and avoid some touristy stops ... but we used the world that we could both easily move around in.

All of this made the disability become almost irrelevant, it was still there but it didn't mean what it can mean in places and spaces that are determinedly inaccessible. My disability, like my personality, changes in relationship to the environment I'm in and the welcome I get. I have enough, just enough, control to manage that in certain ways.

I choose an airline that I find welcoming to me as a disabled traveler.

I choose a hotel brand that offers specific ADA assistance.

I use Google to help me determine architectural welcome.

This doesn't always work, but this trip, it did. I was able to push myself around everywhere we went, I was able to access all that I wanted to access. Joe and I were able to focus on being together and enjoying the time we had to enjoy. It was a relief.

I know I am cursing our trip tomorrow by writing this now, but I wanted to just say, as we are in our last hotel of 8 that it has been smooth sailing.

So we go into tomorrow and the travel home hopefully. We go into the rest of the lecture season determined to be just as careful and make our experience of travel be one that allows us to enjoy the work, the people and our surroundings.

Tune in tomorrow to see if it ends as it began.

Wednesday, May 16, 2018

23 Times

"Hey!" said a passerby with disgust, "Don't do that!! It's disgusting."

Now I don't happen to believe that this was said to the man with an intellectual disability because of his disability, I firmly believe it was because of his behaviour. He had been walking alongside his staff in a mall when he leaded over and spat a huge gob onto the floor. The fellow who protested was clearly upset about this. I, took found it, to say the least, off putting.

The staff said, "It's his right."

The passerby said with surprise mixed with anger, "His right?"

The staff nodded in as haughty a manner as possible. I'm sure she was thinking that she was advocating with the nasty public.

Now, I don't know about you but I don't think we all have 'the right' to spit on floors in stores, restaurants and malls. And if, by chance we do, we shouldn't freaking do it anyway.

I have been fully engaged in the fight for people with disabilities to have full adult rights, this is not what I envisioned. Not at all. In fact, I think this is neglectful of his right to learn behaviours that are not gut-wrenchingly awful. Spitting on the floor in a mall or anywhere like that really bothers me, when anyone does it. But then in all of my 65 years, I've not seen someone do it before so there must be some unwritten code guiding us all to gob where gobbing is acceptable. It seems simple.

Rights should not be trivialized.

Rights should not be used as an excuse to provide service that is essentially neglectful.

The look on the faces of everyone around was not, um, positive. The look on the face of the man who'd spat on the floor was triumphant, he knew what he did was wrong and he's got his staff as his pass-key to do whatever the hell he wants.

Rights should not be trivialized.

I'd like that staff to write that on the blackboard 23 times.

Tuesday, May 15, 2018


Ruby is a big fan of the television show called, I think, "Charmed." While we were here in Los Angeles she asked if we could go and get a picture of the house from the show. On Sunday, after prompting from Ruby, we checked and found it wasn't too long of a drive from our hotel. We ended up driving on both Sunset Boulevard and Ventura Highway along the way.

The house was easy to spot, there were tourists, like us, outside the house taking photos, all of them, by their level of excitement, real fans of the show. We know nothing of the series but appreciated the fun everyone was having and we were enjoying fulfilling a desperate request which told us we HAD to see the house. It was easier for me to take the photo from the car, rather than get out, because of how the house was situated on a hill, the shots were easy to take.

We were the last there when Joe got into the car to sit with me and check the photos. Another car pulled up and a young gay couple got out and came over to the house. They were young, clearly in love, and having a wonderful time. They were having difficulty getting into a position where they could both be in a selfie shot. I suggested to Joe he hop out and offer to take the photo.

He did and they immediately handed over the camera to him. Then they went and stood by the wall that came from the end of the lawn to the sidewalk, They stood close, but did not touch. Inside my head I was screaming, "Put your arms around each other!!" But they didn't. They were happy with the photo though and thank Joe and me, when they noticed me in the car.

My heart broke just a little bit.

Joe and I have pictures of ourselves from when we were that age. We stand beside each other looking like accidental friends, looking like Joe would walk off to the left and me to the right, looking like we were statuary without hearts that beat quickly in each other's presence. I hate those pictures. I don't look at them, ever. I can't bear them.

Because they aren't pictures of us, they are pictures of fear, and of self preservation and of deep, deep caution. These two young men stood like that. Close to each other, but not touching, not playful, not young and in love. Statuary. And I understand their caution, I understand their wariness.

I am constantly told that things are better now for gay people.

And maybe they are.

But maybe they aren't.

Monday, May 14, 2018

A Mother's Day Gift

Okay Google suggested a mall for us to go to on Sunday for a bit of a stroll. The weather here has been grey and drizzling for most of the weekend, clearing up yesterday afternoon in time to let us know that the work week would be beautiful. We arrived, parked and headed in. The place was packed. After a bit of pushing up and down long ramps that connected the various parts of the mall we decided to go for lunch.

The food court was packed. In fact we only got seats because a young family, seeing me looking around, got up and gave us their table. I knew they were doing this for me, a nice gesture to the man int he wheelchair, but sometimes I'll take the advantage. We tucked into the table then tucked into our meals and chatted about the day.

When we were done the place was still hopping, lots of mothers with their kids, lots of laughing, it was a nice atmosphere. Joe got up to put our tray away and appeared beside me was a mother and her daughter, who may have been 14, and whose shyness was clearly evident. They were carrying trays and I was about to offer the table when mom's finger shot out shushing me. Mother's probably never lose that skill.

I waited for a second when her daughter gathered up her courage and said to me, "Are you finished with the table," it sounded practiced but it also sounded like a voice that was growing right along with her. I told her that the table would be free and yes of course they could have it. Her face burst into a big smile and said thank you.

I don't think that she was smiling as much because of the table itself but that she had managed to push through her shyness and ask for it. I saw mom watching her with incredible pride.

Who knows what the back story is and maybe it matters less than the fact that this mom, right now, is teaching her daughter to speak up, to speak out, to use her voice. I glanced back at them and I saw mom with her hand over her daughters and leaned in, speaking to her. I don't know what she was saying but I'm guessing 'proud' was one of the words.

Sunday, May 13, 2018


I know a mother who kept her baby girl. Everyone told her to 'put her with her own kind' ... her response was always the same, 'but that's where she already is.' She spent her life fighting for her daughter's right to adulthood and then she had to, with great difficulty, let her child go into that adulthood. She watched her make good decision and bad ones too. But she knew that in order to gain her daughter's trust she had to give hers first.

I know a mother who lost her husband when she refused to let him throw her boy out into the streets. She believed that her child was sinful, that his gay nature was a punishment, that the heart he loved with was defective. But she believed even more that a mother loves her child, that a mother doesn't throw a 16 year old boy out into the street. She never reconciled with her husband and due to his pressure, she was expelled from her church. She attended her son's wedding, the only one of the family that did so.

I know a mother who adopted a child with a serious illness. She was warned about the emotional cost of loving a child that will die early in childhood, she was warned about getting too involved, she was warned away from the child and the commitment and coming hurt. She simply said, 'a baby needs to be loved, needs to have a home, I am prepared to live and love until there is loss.' Her baby lived years and years past expectations.

I know a mother who was brought up in an abusive home. I know the years she put into therapy, her battle against the rages that would over take her, the violence of her temper that would take away her sense of proportion. I know what a big decision it was for her to have a child. She worried that she would do what was done to her, she worried that she would visit terror on the child. Every day she fought for control, every day. Her daughter remarks, now that she is a mother herself, that she doesn't know how her mother brought her up without ever once raising her voice.

Happy Mother's Day

Friday, May 11, 2018


On Monday October 9th, 2006, this blog made it's first appearance. It was named 'Chewing the Fat' at the time because I thought it funny and because I hoped it would, assure people that I knew who I was, what I looked like and that I was good with saying it out loud. Over time I came to dislike the name and changed it, with a fair bit of protest, to 'Rolling Around in My Head' because that suited me. I never anticipated being at blogging for this long and, of course, I grew and changed and along came the next name, 'Of Battered Aspect,' a name that I'm still fond of even though few others are ... but then, its my blog.

Why all this reminisce?

This is my 4000th published blog. There are nine blogs that were either written to be published in a later that never came or that I took down because I decided that I no longer wanted them to be associated with me.

I've thought a bit about what to write for this blog and I simply couldn't decide.

It feels momentous to me but, it's just a blog.

It feels a bit pompous to be celebrating the thinnest of accomplishments.

This blog has served as a personal diary, as a record of my journey as a disabled, gay, fat, man. It has also given me a forum to bring forward issues that trouble me or excite me or pique my interest.

But most of all, it's given me connection to an amazing group of readers. I enjoy meeting those who read my blog and chatting with them about their reaction to what I think and what I choose to write about. Those of you who have introduced yourselves to me are a fine bunch, those who I know from comments are equally fine. You have challenged me, told me I'm wrong and invested this blog with life.

So here we all are, years later, 4000 posts later.

I thank you for your time and your attention and your thoughts. Thanks for pushing me to grow. Thanks for being here today to read this.

4000 posts.

Wow. And wow, indeed.

Thursday, May 10, 2018

What I Did And What He Said

I was getting into the car when I noticed, as isn't uncommon, someone standing and watching me do this. I find this really intrusive and even though I am in a public space, an invasion of my privacy. So, I said to her, "Excuse me, please don't stare at me, I don't like being watched," she looked a little startled at my words and then said, "Sorry," and turned away and continued on.

A shop keeper, standing at the door of his shop, watched all this, once I was seated in the car he strode over and informed me that the woman I had spoken to had a mental illness and that maybe I need to be more understanding. He felt that I should have known and should have made an exception, "How do you think she feels?" he asked.

"Fine," I said.

We then talked and I pointed out that I made the same request to her as I make to anyone else, I was polite, saving annoyance for those who don't hear me the first time, and she quickly responded. She responded appropriately, she said that she was sorry and moved along.

He couldn't get over the fact that she had a mental illness and came back to that as a reason I should have expected less from her and offered 'might have been' scenarios that she might have been triggered to become violent ... that she might have been really upset and hiding it ... that she might have been offended, might have felt ridiculted.

I suggested that all we had was what happened, I asked and she understood and moved along like 99 percent of people do.

When I wasn't budging and when I was refusing his advice to 'expect less' as an act of kindness, I just told him that I thought his lack of expectations of her as an adult person is part of the problem she faces. The tyranny of low expectations rears its head again.

She had responded to a normal human interaction with more grace than many do and yet people expect so little of her. I worry that she sink under the weight of their pity into the pit that expectations abandon has put in her past.

Wednesday, May 09, 2018

What is This?

Photo description: Two piles, one of gravel, one of dirt. The are in front of a barren piece of land.
So, go ahead and guess. What is this picture of? Clearly something's going to be done here, the piles are the ingredients for some kind of construction.

Just off to the side of this is a small children's play and learn area. I had arrived early to work and done a lap of the parking lot and then pulled over to the play area drawn by a beautiful apple tree in full bud. I looked in to the kids area and it looked like it was well loved and constantly in use. I couldn't go in to that area because the ground was rough and the pathways narrow. But I enjoyed what I could see from where I was sitting.

A few moments later we were joined by the owner of the building this was all attached to, she had come to let us in. We talked about the play area and she mentioned that these two piles of dirt were going to be used to expand the area and make it accessible to wheelchair users. She said it in a natural way, not in a way that expected great heaping amounts of gratitude for the venture. It was just a fact, it wasn't accessible and now it will be.

I took the picture because I often speak about intentional architectural exclusion, people can't know that something is inaccessible, ignorance is used as an excuse for metaphorically hanging a sign on the door: No Cripples Allowed. Here, I find intentional architectural inclusion. It matters that what was inaccessible becomes accessible, it matters that those who can, do and those who won't are outvoted.

So, that picture - it's accessibility ... it's the future of welcome.

Tuesday, May 08, 2018


I rarely shock myself. I do occasionally surprise myself, mostly by what comes out my mouth unbidden, but shock that's rare. Yesterday I did something so uncharacteristic that it even shocked, and maybe worried, Joe. I could see him reeling as he helped me.

We got to our hotel in Crescent City in the very early afternoon. We checked in and before we went to the room we went over to a small Mexican restaurant that had picnic tables set up outside. No one was sitting there because apparently, its cold out. To a Canadian it's shorts and tee weather. But we got there and discovered that the restaurant itself was accessible so we both went in and ordered. I had two soft tacos and Joe had a super huge burrito.

As is my custom, I spilled food everywhere. My shirt had so many beans on it that I was sure that we'd wake in the night to hear it farting. But I didn't care, the food was good, it was messy, juice ran down my arms, I was in food heaven. We finished up and wiped up and headed back to the hotel. I decided that I wanted to take Joe out for a beer and we stopped at the restaurant that's attached to the hotel. It didn't open until 4.

So we got to the car and I knew that if I went into the room, I wouldn't come out again and I didn't want to sit in the room when it was so sunny out. We had passed another restaurant on our way back to the hotel which was open, which served both tea and beer so I suggested we go there.

The only thing that gave me pause was that my shirt had food broaches right down my belly to my pants.  I managed to chisel it off my pants but my shirt was a lost cause. I noticed then that there wasn't anyone around, that there was a space I could tuck into, so I asked Joe to get me a clean shirt out of the luggage in the trunk of the car. He got in and started to drive and I waved him down, he said that he was taking the car to the parking by the room and I said that I just wanted the shirt now and I'd change here.

"Outside?" he asked his face freezing in shock.

I never, ever, ever, ever, take my shirt off in public. NEVER EVER. But I was feeling good and powerful, I'm pushing myself everywhere and my physical strength has diminished my sense of vulnerability and, I realized with a shock, I didn't care if someone was watching, or taking photos for the Internet or whatever. I just didn't want to go to the room. I knew myself to well. That would end our day.

So Joe handed me a clean shirt, I took off the old one and felt fresh air on my skin for the first time in 57 years. Fifty Seven. I actually remember the last time I took my shirt off outside, I remember what happened, and I remember deciding to never do it again. And I hadn't.

Until yesterday.

And the air felt good. Cool. Clean. Fresh.

But not caring any more felt much, much, better than even that.

Monday, May 07, 2018

About Without

Living dangerously, we had tea for breakfast. We are both men of the age where black pants are the only sensible solution -- they say that the body is a temple, so as with all buildings the plumbing gets a little rusty -- and typically we never have tea with breakfast when we have a long drive. But we were both hankering for a hot drink in the wee early morning as we drove north on US 101.

And we were punished.

Our first of several stops was at a small local grocery market. Joe ran in to see if they had an accessible loo and they did so he came back and began loading the wheelchair out of the car. All of his bustle was noticed by two men who were standing almost directly in front of the doors to the store. They were both chatting with each other but one of the men noticed me, my size and my chair. He took a step aside to get a better view, clearly the curtain had gone up and he was set to be entertained.

I hate being watched get out of a car, I find the stares intrusive and demeaning. Joe had finished setting the chair up beside my door. I opened the door and the sound caught the other man's attention. He looked over at the scene then back at the fellow he was chatting with.

Then he did something remarkable.

He stepped into place blocking the stare that had been laser focused on me. I had been about to ask Joe to do the same thing but I didn't have to. I hurried out of the car and got into the chair.

In complete privacy.

It was wonderful.

That guy, the one who moved and blocked the stare, gave me a gift that I really value. He acted in a way that told me that he understood the situation, understood my right to be about without.

Joe and I talked about this over lunch. Who was that guy and how did he know. Did he have people with disabilities in his life? Was he just naturally aware? How did he come to be? Further, and this is the bigger question, where did he get the courage to act on what he saw.

He didn't just notice.

He took action.

To assist a stranger.

I am always so surprised when something like this happens, maybe because it doesn't happen often. Maybe because I no longer believe that I will ever be really safe in public.

My right to be about without - I experienced that for a few seconds in a parking lot at a store on US 101.

I want more.

Sunday, May 06, 2018

The Chair at the Door

There are three things I do when travelling by air to make the experience less frightening. To be clear, I am not at all afraid of flying, I don't love it, but it doesn't scare me. (Don't you love the part of the safety video where they say, "By now you should be comfortably seated in your seat ..." is anyone actually comfortable, anyone at all?)

What scares me is giving up my wheelchair to others who are tasked with getting it safely back to me at the end of the flight. What also scares me, as it's happened twice, is other passengers stealing my chair from the door of the plane as it waits for me. So, I've come up with strategies to deal with my anxieties.

1) I speak to the purser on board and ask him to notice my chair and to keep an eye out for anyone other than myself taking it away. I explain why I'm asking. I wait for their shock to settle and then they typically agree right away.

2) I get on the plane and Joe tags the chair and sets it aside and speaks to those tasked with loading it.

3) Just a few minutes before the door closes, as things settle, I ask a flight attendant to check with the purser that the chair actually has been loaded.

Thusly assured, I can relax and enjoy my 'comfortable seat.'

When I hit step three on the flight out west, the flight attendant looked at me, annoyed, and said, "Don't worry, it's probably been loaded."

She said "probably" to a wheelchair user about his chair.


Shortly after take off I made a complaint to the purser about her attitude and her dismissal of my concern as valid. Thankfully he understood and thankfully he had kept an eye out and saw it taken away to be loaded. He assured me that there was no concern. He also said that it was unacceptable and unfeeling to not recognize the seriousness of my request. Then he apologized.

My chair indeed made it.

But I'm left wondering why so many non-disabled people have difficulty in understanding what a wheelchair actually is and why it's so important and why disabled people have so much emotion wrapped up in the chair and their need of them.

Isn't it obvious.

We can't walk.

We need a wheelchair.

What is hard about that?

Saturday, May 05, 2018

The Politics of Shampoo

It seemed like a perfectly ordinary grocery store. We've been there before, in fact, and we'd come back because we wanted to pick up a few 'for the room' things before we headed over the Bay Bridge. It's another part of our routine when we come to San Francisco. We were almost done when Joe remembered that he needed to pick up some shampoo so we headed over to the toiletries aisle.

We turned where the sign indicated that the shampoo and sundry items were kept. The aisle was empty except for two women who seemed to be aimlessly standing in the middle. They were just a foot or two away from the shampoo and it was then we noticed that the whole aisle, the whole thing, was under lock and key. We were confused and they saw it on our faces and explained that they were waiting for a clerk to bring a key and they expected her back shortly.

I was curious so I began looking and the shampoo wasn't the only thing locked up. The deodorant, the toothpaste, the shaving stuff - razors, foam and after-shave, all that and more was behind clear hard plastic barriers firmly locked in place. "But why?" I asked the girls.

The taller of the two leaned down and spoke conspiratorially to us, explaining that the clerk had told them that 'drug addicts' and 'poor people' steal these things and this was to reduce the stores loses. I had a shocked look on my face and they misread the source of the shock, it seemed that they thought that I was horrified at the 'way the countries going'. Out came prejudice and preconceptions about poor people about people addicted to drugs about people with mental health problems.

I said, "You know what this means?" They were eager for me to join in on their torrent of disgust with people who are 'dregs' and 'dangerous.' "That means that when we are buying food for the food back we should be slipping in some shampoo and deodorant and stuff like that. I mean they don't lock up the bread or any of the other food, they lock up what people need to get clean, stay clean. They lock up stuff that will help people feel good about themselves and apply for jobs and get back on their feet. I've never thought about that before, how very awful."

They looked at me as if I was an alien.

And, said, "Yeah I guess you can look at it that way."

I agreed with them.