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.