Thursday, December 27, 2018


There is a peculiar type of silence.

It is the quiet that happens after noise departs.

It can be welcome, a relief.

The streets after a riot.

The dictionary says that peculiar means 'exclusively belonging to ..'

It says that silence means 'the absence of sound.'

So there is a peculiar kind of silence.

That happens, each year, at our house.

Suddenly the noise of joy.

The explosions of laughter.

The ripping of wrapping paper.

The jokes over dinner.

Suddenly the noise of comfort and closeness.

Of people happy.


With the closing of the door.

And we sit.

In our chairs.

Listening to that very peculiar silence.

That tells us that we are loved.

Monday, December 24, 2018

A Voice Worn Gentle: Christmas Eve Post

For many years now, Joe and I have made our way to the Roy Thompson Hall to see The Toronto Symphony Orchestra and The Mendelssohn Choir perform "The Messiah." When we lived in Toronto we took the bus there, now we drive. After learning last year how and where to park, we did just that. We backed into a disabled stall at the same time as another older couple.

He needed his walker and I need a chair. As she was getting the walker out she noticed Joe pull my chair out of the car. "That looks like it's light," she said. Then Joe explained that it was a carbon fiber chair and that it only weighs 8 pounds. I asked Joe, while I was still sitting in the car, to tell them both the make of the chair. He didn't hear me.

When I got out and in the chair, they were just done and also ready to head up into the hall. I rolled round and told them the make of the chair to ask for, she looked at me and said, "And clearly it can hold a lot of weight." Now, I had been in a good mood, I had been looking forward to just going to the show and enjoying the music. I keep forgetting that I have to deal with shit like this all the time.

"Thank you for pointing that out!" I said, as if I was shocked at the revelation that I'm fat. She heard the tone of my voice for what it was and scrambled, "I was .. I was ... I was just trying to congratulate you," she said. I didn't respond because I was done. Yeah, right she was congratulating my chair not me, I thought, but didn't say, not wanting to prolong the conversation.

When the elevator came, there was room for all of us but they said they'd take the next one. We'd offered, they declined, it was done.

I thought.

When we got to the top and got out I had to push into a crowded room. The door had not opened yet. So we were all kept warm by each other's presence (which would have been a nice topic for a Christmas Eve blog). They arrived and were right behind us.

Suddenly, the fellow, her husband, reached his hand out and touched my arm. I turned to him and he asked if I could repeat the name of the company we bought our chair from and the name of the chair. His voice was gentle, softened by age, so I told him again, told him everything, including the name of the salesperson to ask for, the best there. I could see her off to the side taking notes. I was glad to be of help.

Just as we finished the conversation he said, "Thank you for being so gracious, it's hard to always rise high, isn't it?" I said that it was. "This time of year, it's the gifts that are hard to give, that we end up remembering. Trust me, I'm much older than you."

I could see in his eyes that it mattered that I heard him.

And I did.

So I say to you what I said to him and his wife, "Merry Christmas."

Sunday, December 23, 2018

What Compliance Does

We went to see a broadcast of National Theatre Live's production of The Madness of King George III yesterday at our local cinema. I love how small and accessible the world can see sometimes. This is a play that I'd not heard of but one whose title intrigued me. Well, in fact, I kind of hated it. One of the reasons is the, much lauded by the non-disabled press, performance of the lead in the role of King George. He played madness as if it were kind of a frenzied cerebral palsy. It was an insult to both people who struggle with mental health and people with disabilities. It was over the top awful.

It was also, kinda, boring. The one dimensional king was hard to relate to, hard to feel for, hard to take as fully human. So without him it was like The Madness of Someone Not Very Interesting.


I'm glad I went.

Because there was a line of dialogue that came during a scene where a doctor had come in to consult on the king and his behaviour. The doctor talked about the stressors that come with the royal role. He said something that slammed against the back of my mind and pinballed around all sides. It left me momentarily intellectually reeling. I love it when that happens.

I wasn't much engaged in the play so I had time to think on it. Now this is probably a really poor paraphrase of that dialogue:

The mind and heart cannot flourish fed a steady diet of compliance.


I say again.


That is big stuff right there. It's not just a quote but a mental meal. See then he went on to say that people need other people to stand up to them, to disagree with them, to put them in their place, but those whose roles prevent that from happening end up with a mind that languishes.

Holy Shit!

Look at what we've done.

By training, programming, and otherwise beating non-compliance out of people with intellectual disabilities we have denied their freedom and damned our own growth.

We've done damage all round.

In the face of constant compliance we learn only that we are right all the time, that we are good all the time, that our actions don't hurt even some of the time.

Our minds and hearts grow lazy.

And lazy minds plus lazy hearts are the one's that lead us to cruelty, and a feeling of our own rightness to rule over the lives of others.

The mind and heart cannot flourish fed a steady diet of compliance.

I'm glad I went to the play, I'm glad that I was feeling bored of the performance, because it allowed me to both hear the dialogue in such a way that I could feel it sink into my soul a little bit.

That's what art, even art you don't like, does.

Saturday, December 22, 2018

Conversation / Confrontation / Conflict




I look to see who's calling out.

He's headed towards me.

I am pushing uphill towards the mall.

He's walking quickly but with great effort.

Hus legs work differently than others.

He is a member of the disability club.

We have eye contact.

"Can I give you a push?"

"No, thank you."

"I don't mind."

"I do, So NO."

"You're doing good. Keep it up."

I stop just before the door.

He catches up.

"What are you doing?"


"You have a disability too. You know how people view and treat us. Why are you doing what they always do? Why did my 'no' not matter to you?"

"I don't see myself as disabled."

"Well, everyone else does"

"I am not disabled."

"Well then you are a jerk."

"What do you mean? I was only trying to help."

"You were only trying to help a man who was, with ease, pushing towards a door. Helping me doesn't make you less disabled you know. It's not a feather in your cap."

"Fuck off."

"Have another day of pretending you aren't what you are. You need to come out, man."

"I hate you, you prick."

Well, then, at least I was treated as if I have one. Disabled people who don't have a disabled identity need a bigger closet with wider doors and no mirrors.

Friday, December 21, 2018

Fortune's Child: a 66th Birthday Post

It doesn't happen often, it may seem so because I've written about weird things that happen at the gym, but by and large I'm treated with respect and given the gift of invisibility when I work out at the gay. I don't want to be stared at when exercising, and I'm not, with rare exception. But things do happen. Yesterday an older fellow stopped, tall, lean, and smiled at me. He obviously wanted to say something so I stopped.

He said that he was moved and inspired by seeing me there. I was, he said, obviously working hard because I was struggling a bit. He said the he only did some weight lifting, with small weights, to keep himself toned. Because I run, you see, that's what I do. OK, I thought, done now? Nope. He went on to say that he saw me and realized how fortunate he felt that he could run. "I guess you make me realize how lucky and fortunate I am.


"I don't consider you as more fortunate than me. The very idea is insulting. Why do you think that what you do is better than what I do? Why do you think that you have more joys than I do? Why do you think that fortune gifted you and left me a lump of coal. Let me tell you, being disabled has its own joys, its own magical moments, its own gifts. Go off and run. Go off and feel better than me. But realize you are simply jerking off using pity as a lube. "

Is what I said an hour later in my head.

Sometimes I'm stunned into silence.

But, this morning, waking up and laying in bed for a few moments while I woke up. I realized that this man, the one I inspired, had given me a great birthday gift. We have a day in which celebrations are planned that I'm eagerly looking forward to, but in my waking moments he created an opportunity to think about my life. To ask myself a fundamental question.

Am I happy?

He assumed that, because he didn't have a disability, he was fortune's child. He assumed that, because I do have a disability, I am not.

Is he wrong?

I'm 66 today. That's a lot of candles. I have only been disabled for about 14 of those years. My life before and my life after seems almost eerily similar. I still like the same things, I still think fart jokes are funny, I still think that value isn't a gift given by others but a gift given by birth.

But my life did change. It changed in ways that changed me. I have learned lessons that I never would have before. I have lived at the very edge of people's tolerance and dead center in the eyes of people's disdain. I have seen extraordinary kindness and outrageous bigotry. I have seen 'community' and been frighten by it. I know now what battles need to be fought, I have learned how, in my own small way, to fight them.

There are days when Joe, standing beside me, and casually puts his hand on one of the handles of my wheelchair. He doesn't notice it, it's a natural move. It's a move of intimacy. It's a move of warmth. It's a move that acknowledges his love of me, as who I am, in a powerful way.

Does that make me fortunate?



Not more fortunate than any one else.

I don't know what joys you have in your life. I don't know where your path has taken you. I don't. So I don't assume that my journey relates to yours in any way. We each have our own paths, we each travel different journeys. What is the worth of considering who's more fortunate?

Yes, I'm happy.

That tall lean man who burst into my day, without consent or permission being asked, that man who felt that his privilege gave him the right to speak to a disabled person working out in a gym, disrupting a routine, and disparage him by being 'inspired to feel more fortunate,' that guy -- thank you.

 I got up this morning to the realization that I am happy. I feel comfortable in my own body. I feel satisfied with where I am and who I'm with.

Thank you.

Thank you for making me think.

I am fortune's child.

Like everyone is.


I am raising money this year ... here is the link if you are interested ...

Thursday, December 20, 2018

Gift to Myself

I left Joe to wait at the door as I headed to pick up the final thing on my list for him. The mall was busy but there were stretches where I could go all out. Push my chair as fast as I could. I was over enough that someone coming out of a store wouldn't be in my pathway, even so I kept a very watchful eye as I soared through the mall.

A couple of people, maybe even several, really noticed my speed as my arms pumped hard to accelerate and race through the space. Some disapproved. Many didn't. They just smiled.

For me, their reaction wasn't particularly important. I don't care why some disapproved and others enjoyed what I was doing.

What mattered was that I was getting to use my strength just for fun. I've been working out for almost a year and I'm pretty strong now. My chair is lighter and more agile and, well, so am I.

Sometimes I feel a need to just play with my chair, play with my strength, enjoy feeling strong and enjoy feeling fast.

We all work so hard for things in our lives, sometimes we forget to enjoy them.

I've worked hard to get strong.

I've worked to get fast.

And today I enjoyed that.

This is a gift I give to myself.

Wednesday, December 19, 2018

Another Gift

It is sometimes hard to Christmas shop for Joe because when I'm in a store or mall, he's usually beside me. We do a lot of this together. He gets to do his during my work hours, because he has time to wander the shops, but me, not so much.

Gotta be careful that there isn't a spoiler here - he reads the blog.

I went into a store and asked Joe not to be with me but to wait outside in the mall. He agreed and I went and got a bit of help from the staff, who were really friendly and welcoming. This surprised me because this is the kind of store where, when people with disabilities shop there, we face criticism about how we spend our money. But I took their friendliness and attitude as simply meaning they weren't assholes who felt they had a right to control my finances.

I made the selection and headed over to the cashier. When I got to him, I found that he was equally cool with everything. I tapped my bank card on the reader, it was paid for and I was good to go. I asked him if he could put the parcels in my wheelchair bag and he agreed. When he got beside me he said, "These are the kinds of things that people like to steal. The bag tells them what's in it and I'm worried that your wheelchair bag is open. Do you mind if I push these to the bottom of your bag? I believe you will be safer if I hide them a bit. Don't want you to have them grabbed out of your bag. Also as a disabled person people may figure you for an easy mark I wouldn't want for you to be mugged for those gifts."

So, he saw how my wheelchair bag is pried open by the way it hangs, he saw a potential danger, and asked my permission to do something to keep me safe. Clearly this is what he thought that I should do, but he didn't inflict that on me, the choice was mine. I thanked him and asked him to shove the parcels deep into my bag. When done he said, "There, no-one is seeing that!"

After I thanked him, I headed on my way.

There are certain dangers that peculiar to each of us with disabilities. This fellow managed to give me disability informed advice.

1) You're bag is open, people may steal from it easily, I should make sure the package can't be seen. 

2) You have a disability, people may see you as someone easy to target, I should ensure that you are safe if I can.

How awesome.

I've literally never had this kind of interaction in a store, ever. Not once.

I'm getting a lot of gifts early this year.

Tuesday, December 18, 2018

No 'Splaining

So this happened yesterday.

Background: My doctor is fully aware of my distrust of the medical system and in accessing health services. He has never challenged or doctorsplained away any of my concerns or fears. He knows I come with a long and vast history of interactions that were disrespectful because of, first, my weight and second, my disability. I put them in that order because I was fat long before I was disabled. In one instance early on in seeing him he actually sat at his desk, shook his head, and apologized for something that had happened that he didn't do. It's unusual to be believed. It's unusual to be taken seriously.

So, as Joe and I hadn't seen the doctor for a while we both had little lists. We went through them and for one of my concerns he's decided that I need to see a specialist. He asked me about my experience at one hospital, how had I been treated, how safe did I feel. Then he asked about the other hospital where I'd also received service.

He wanted to take my experience into account when deciding where to send me. Ultimately he will choose where he thinks they have the expertise needed, but all things being equal. My opinion weighs in.

I am astounded by this kind of support.

I am astounded that my voice matters.

I shouldn't be, but I am.

I think of this in relationship to the people I support. Do they get asked often enough? Do they have their voice heard and valued rather than heard and dismissed? Do they still live, like I do, with feeling grateful for being involved in the decisions made regarding my health and my care?

I hope so.

I really do.

Because I was astounded.

And I shouldn't be.

Any decision now made by my doctor, I will have faith in, I would have anyways, he's a good doctor, but now the level of trust in a system that has often served me poorly, has risen just a little bit.

Which is, in my case, just a teensy bit miraculous.

Monday, December 17, 2018


He may have been about 14 or 15 years old, out with a bunch of his friends. They were a noisy bunch, banging into each other as they walked, laughing loudly, and generally being boys drunk on their own testosterone. I'm not fond of groups of teens, they so often see me as an easy target, I tensed up when they came alongside where I was sitting. Joe was at the car, having forgotten something, and I was waiting for him.

Predictably, the boys turned their gaze to me, there were some whispers followed by guffaws, there were overt stares. I saw a woman with Down Syndrome approaching from the other side. She saw them and looked scared. I turned my chair, there is much more of me to see from that angle, and then I took my coat off. My display and my actions distracted them from raising their gaze from me to her. She escaped safely.

"We take care of ourselves, we take care of each other." (From the pledge of personal power)

They were beginning to jostle and move forward. I watched them leave. One of the boys, maybe a bit younger than the rest, turned to look at me one last time. I looked straight in his eyes. I wanted him to know that I had seen him. And I don't mean having seen his behaviour. And I don't mean seeing his cowardice. No, I mean that I had seen him. A boy willing to participate in cruelty towards a stranger, a boy who went along instead of standing up, a boy who could have chosen differently but didn't. I had seen him and his easy cruelty and his weakness.

He mouthed, "I'm sorry," to me.

I shook my head.

It wasn't enough. He knew better, they all knew better. I'm done with easily given apologies. I'm done with letting people off the hook, I'm done with being judged as inhuman yet being expected to dig into my humanity to find a way to make those who hurt me feel better about themselves.

He looked distressed.

I may have ruined his Saturday.

But I hope I improved the rest of his life.

Friday, December 14, 2018

A Holiday Miracle

I rounded the back of the car and pushed myself up the cut curb. I think the crunching of salt under my tires caught his attention and he looked over at me. The school's principal waved and commented on the mild night, I did too. He didn't break his gait when he saw me, he kept on going towards the door as quickly as he had been before. We chatted about nothing, as people do, as we approached the door. It was clear he was getting to the door before me.

He hit the automatic door opener and the door swung open and he walked through. He did the same with the interior door and he walked through that too. All I saw was his back as I pushed through both open doors myself. Once in he asked where we would be sitting. I told him and he followed me to where we traditionally sit for the Christmas pageant. He moved a couple of chairs aside and then carried them away, entreating me to enjoy the show as he left.

Who is this guy?

I can't tell you how awesome it was to meet with and chat with and follow into a building someone who simply didn't react to the wheelchair. Almost everyone does something, slow down, speed up, step aside, make a huge arc around, something. He did nothing. Almost everyone would have made a big deal about the door, holding it, getting in the way holding it, flattening themselves against the wall while holding it, something.

But I followed him in, saw only his back.



Like I was an adult.

Like I was competent.

Like I was independent.

Like I had the skills to get myself around unaided.

Like I lived a life wherein I didn't need the kindness vultures, circling above me, swooping in to aid in every task.

But mostly like I was an adult.

It was a great start to a great evening. Ruby and Sadie did well and I watched them with a kind of awe. Who are these lovely kids, how did they grow so tall?

Also, I got to see a kindergarten Mary and an Angel get into a shoving match over who got the mike. Mary won and said her piece unapologetically. Go Mary.

But the best gift of the evening was the principal's back.

Ahead of me.

Going through the door.

A Holiday Miracle.

Thursday, December 13, 2018

His Place

She is upset. Very upset. She sits down to talk to me during the morning coffee break. She is attending a conference wherein am presenting to staff at an agency in the morning and will be presenting to people with disabilities they serve in the afternoon. I usually prefer doing it the other way round but that wasn't possible this time. She came to speak to me because she wanted to give me a heads up about some of the people they serve.

She told me that 'they don't understand our role' and 'they don't understand that they are disabled and need our support'. Whoa! I asked her to give me an example. She said she could and I noticed that she was getting teary. She told me of an encounter with one of the men that she supports.

His doctor had told him that he needed to lose 20 pounds and had put him on a diet. She had been at the consult with the doctor and when she left she told him that she would help him achieve the goal. He said 'No,' and she thought he was just upset by what the doctor had said. (When in fact he meant what he said 'No.')

He refused to change his eating pattern and she told him that she would 'put him on a program.' He told her that he would go on a program only if she did too. He said that she was a bit heavy too, so if he has to do it she has to do it as well.

She was furious that he had spoken about her body. I asked her if she had ever talked about his body, she said that she had but it was just joking like calling his belly a 'spare tire' and telling him he looked pregnant. She didn't make the connection so I did for her. "Well you made comments about his body and he made comments about yours. In fact I think what you said to him was ruder than anything she had said that he had said."

Then it slipped out.

"He just doesn't understand his place."

His place, HIS PLACE! His place which is obviously to be subservient, silent and submissive. He clearly stated that he didn't want to diet and when pushed said, "I will if you will."

All that needs to happen for someone with a disability to become problematic is for them to become rightfully assertive.

She brushed my comments away and said, "Make sure when you teach them about their rights you teach them about ours too!" She stormed away from me.

Um, no. If I was going to teach that, I'd have to start with her. Having rights is one thing, having power is another, added together many people end up with entitlement. He had called equal in a situation where equality wasn't welcomed.

In a place where equality wasn't welcomed.

With a person for whom equality wasn't welcomed.

Just before I was to start to teach, she reminded me of what she said. My response was 'Good luck on that diet, hope you both do well."

Tuesday, December 11, 2018


Have you ever had a behaviour that you wanted to get rid of, an impulse you wanted to control or a goal you wanted to achieve? Have you ever tried everything for change but find that you keep making the same bad decision over and over and over and over again?

That's me.

Right now.

That's me yesterday.

I firmly had a view as to how I would handle a high risk situation full of prompts and triggers and history. I did self talk and affirmations. I told myself a social story with victory at the end. I reviewed my strategies. I was confident. Even with all past failures, I was confident.


All the preparation was nothing.


Old habits, old reactions, bad decisions and worse choices returned. Like a song that you'll never forget, "La La La La La La you're total failure, Oh Oh Oh Oh you're a total fool" that little ditty that goes round in your head chastising you.

That's me.

Right now.

That's me yesterday.

I freaking know better.

I freaking want better.

I freaking an really trying.

But it's so hard. Just so hard.

Changing behaviour is hard.

And consequences, there are many but the worst is the words I now allow myself to call myself and feel justified in doing so.

Everybody can learn new ways of doing things.

I believe that.

Pity that belief doesn't mean squat when you dance to old rhythms does it.

There's always tomorrow.

Always another humiliating failure coming down the pike.

I need another strategy, maybe one that acknowledges that failure is part of journey.

Oh. Gosh. Doesn't that sound like crap?

Think I'll just beat myself up for a few more hours, why not, it's never worked either.

Saturday, December 08, 2018

Oh, Oh, Oh, Conversations with Cripples

Three conversations:


At the gym, for exercise, I go up and down the ramp somewhere between 10 and 20 times. I'm not travelling for a bit so I want to do exercise that keeps my 'pushing' skills at their max. It's a long ramp, a good grade, and it really works my muscles. I arrive at the top to a question from a fellow member who had just come over to work on the cable machine at the top of the ramp:

"So, why do you push yourself up and down the ramp. You'd think you'd be tired of pushing all day."

"So, why do you run on the treadmill?"




I am at the till having made a purchase, there is a little bit of a line up behind me. I had taken my gloves off so I could complete the transaction. When done, I take a moment to put my gloves back on. I never push without gloves, today it's even more important because my wheels are both wet and dirty. The clerk, looks up at an impatient line-up (putting Christ into Christmas is way easier that putting Christ into fellow shoppers) and asks:

"Why do you wear gloves anyway?"

Gloves on, I roll back to where I can look down at the tellers feet.

"Why do you wear shoes anyway, you're indoors?"



At an informal gathering people are chatting, someone I don't know is there and they are asking their friend about who I am and what I do. Their friend and I aren't friends but we have friends in common and they answer by describing a bit about what I do. Later I am asked by the same person who asked the first question (lots of points if you followed all that) in a mammoth act of ignorance about disability, benefits and the poverty line:

"Can I ask you why you work, surely you could live off the benefits?"

"Do you work?" I ask.

"Yes, I love my job, I ..." when they finish I say.

"I don't understand why you work, surely you could live off unemployment and other benefit packages."


Question for all of you. Are we that alien to them? Are we so far from the norm that they can't see any typical motivations for us? How do people grow so ignorant about people who live in their midst? But I guess this also explains racism, sexism, homophobia, Islamophobia, disphobia, and ableism, huh?

and I'll throw in a 4th one for free:

"Why do you write a blog?"

"Because I enjoy typing."

Friday, December 07, 2018

One of Those Times

So we were headed to the elevator when one of the three women, all pushing their babies in strollers, used the 'R' word in a sentence. As it turned out they ended up right behind us as we waited for the elevator to arrive. The door opens. I turn to both back in and to face them.

Now, you may find this hard to believe but I find it very difficult to confront strangers in situations like these. My heart was pounding in my chest. And the reason I continued, the reason I spoke up, was because my heart was pounding in my chest. I care about this. Nervous or not, I care and my voice is necessary.

I said calmly, "Excuse me," I spoke to them as a group even though I knew which one had used the word, none of them stopped her, which meant all of them did it, listening without complaint is no different than saying it yourself, "I don't mean to enter into your day but I have to, I heard you use the "R" word and I'm asking you as a disabled person to think about the words you use. That is a really hurtful word. It can devastate someone's spirit. So please don't."

They were thunderstruck.

The elevator door was trying to close but jumping back as soon as it started, as if it were scared of me too.

Then one of them, one who did not say the word said, "It wasn't us! I would never, ever, use that word. Ever!"

I had no intention of pointing out the one who had spoken the word, I could see the emotion in the group and felt that now was the time to leave it to group dynamics. I said, "Oh, if it wasn't you, I apologize. I heard the word used behind me and I feel that, as hard as it is, I need to speak up. Everyone deserves to be safe in the world."

I backed in and the door closed.

Even though they denied it and I knew that one of them had said the word, I apologized. It was important to simply not look like an asshat at that point. I didn't want them to easily dismiss me.

Working towards social change sometimes takes more courage than I want to have and the ability to appear calmer than I ever feel.

But there are times when our voices are needed and necessary.

This was one of those times.

Tuesday, December 04, 2018

Bullies and Bigots and Big Mouths Beware

Social Violence. That's what I call the day to day interactions with bullies and bigots and big mouths. Those people who intrude into my day to make comment on my body, my disability, and my way of being in the world. It's a daily occurrence that I could do without. But, I realized only recently that somethings changed in me.

I've been teaching people with intellectual disabilities about their inner voice and the power they have to down out the sounds of social violence with their own thoughts, their own perceptions and thereby become their own master. They can school themselves about who they are. Often I have had to teach about language of self-positivity to people who are used to reinforcement and praise for behaviour but have not idea about the need we all have for personal acknowledgement. There is a difference. I love teaching this. I love watching the effect of new language on old wounds. I love seeing, sometimes, and almost miraculous response to the training.

I've been teaching this, because I've been doing this for years. Intentionally responding to hateful comments, to words that violate boundaries regarding language of the body, to the purposeful, targeted, attacks in regards to both difference and disability, with new words, different words, coming from a different voice - my own. That voice started out with the volume turned down. It was if I was afraid to wake the anger that grew inside of me, so affirmations were whispered. But now, that voice has become strong enough to do it's job.

The words of others no longer teach me who I am. I had let that happen. I had let them tell me that I was ugly and stupid and fat and useless, and I accepted those words for what they seemed to be - information for me to process. Declarations, in absolute terms, of how I should see myself. Those words did not wound me, they described me, they gave me a language with which I could refer to myself. It was only later, when they coalesced into something dangerous, that I understood the mistake I had made.

The view of other no longer instruct me about what I need to do and who I need to be. I had let that happen. I had tried to fit in. I had tried to blend in with the bland and tone my difference down. I had tried to walk the path set before me and in doing so lost my way. But now, I need no instructor, I alone see my path and I alone determine the speed at which I travel.

This Christmas, out doing shopping and other holiday things, I keep hearing the words and the comments made. The social violence is still attempted. But I am not longer tempted, even slightly, to listen.

I am not done yet.

But I am me, and I have arrived at a stage in my life when that's good enough.

I am not done yet.

But I alone know what needs to be worked on, the goals I have for myself.

Let the bigots and the bullies and the bigmouths have at it, the community is mine too, I cede no space and no territory. You  can't drive me into hiding. I am OUT and now understand exactly what that means. It means that the world is mine as much as it is anyone else's.

And for what they have to say, STFU, no one's listening any more.

Monday, December 03, 2018

9 Years Old: International Day of Disabled PErsons

"I'm bored talking about this, can we talk about something else?" Sadie is only half joking as she's listening to Joe and I talk about how difficult it had been for me to get an egg salad sandwich because of some physical barriers that made it impossible for me to hear the sandwich maker and for her to hear me. Sadie slumped back into her chair and then asked for the topic to be changed.

I get it.

I understand why she wanted the conversation to change. We go out a lot with her and her sister and this is a conversation she has heard over and over and over again. She's 9 years old, an expert on access and accessibility, and she simply doesn't want to hear another conversation about another barrier encountered.

In her opinion access is simple.

She's 9.

She's right.

International Day of Disabled Persons is today. It's not on the news. There were no stories connected with the day. I've seen, outside my own organization, no advertising about anything happening in the city around me. There may be. But it happening in whispers.

Sadie thinks they should just make things that work for everyone.

Sadie thinks that conversations about inaccessibility should be obsolete.

Sadie thinks that we should be able to talk about what we are doing, not the struggles involved.

At Vita, where I work, we will be having an open mike where people with disabilities can come and say what they please about whatever they want. No non-disabled speakers will participate from the podium.

Here's our measure about an event like this:

1) Did disabled people plan it?
2) Did disabled people set the rules?
3) Are all disabled people welcome?
4) Are non-disabled people welcome but made realize it's not their day?

It's simple.

I'd like to go out with the kids and not have that conversation ever again. Not because we are avoiding the topic but because the topic doesn't come up.

International Day of Disabled Persons:

Our voices.

Our choices.

It's really, really, simple.

Sunday, December 02, 2018

She Was Exhausted





We were doing some last minute shopping for parcels that need to head west on Monday and the place was packed. This makes pushing my chair arduous because I have to be hyper-alert for the walkees who legs seem to simply not know which way they are going next, like the brain whose pilot is on a break and who detached the legs on the way out. Then there's the one's who see me and freak, the dart on this side and then that side, panic in their eyes, trying to be a good person but simply not able to make up their minds which side they should walk on to keep themselves safe and to give me room. All the dashing back and forth is dizzying to watch and nearly impossible to navigate. Sometimes I just stop and say "Please go ahead" and wait until they and their panic have passed before beginning again.

But what I wanted to write about was what I saw happen, and when I intervened, at one of the areas of the mall where people who don't have chairs are given some, they willingly adapt the environment for walkees, so they can rest. I saw a woman with an intellectual disability with her staff. There were two possible places for them to sit. Conveniently the two seats were facing each other. The staff was desperate to give the choice of the two seats to the individual being supported. Now that's cool. But the desperation and eagerness can simply make people slightly wacky.

The staff was in front of the woman with a disability saying, do you want me to sit here, or here; here or here' here or here. Each time she offered she moved her body slightly to indicate which chair her butt would sit in on the simplest command from the woman with the disability. Every time she moved the woman with a disability made an attempt to take a seat but was then blocked by the staff going back and forth and offering a choice in chair.

I couldn't take it.

I have been often blocked by people trying to help me and it's funny. At first.

I stuck my head in, uninvited I know, and said to the staff, "Just offer the choice and then stand still." The staff looked at me, affronted for a second and then, realizing, started to giggle. She offered a choice the woman with a disability sat down, looked at her staff and said, "That was exhausting."

We all laughed.


Yep, sometimes our desire to be helpful makes it impossible to see how very unhelpful we have now become.

Saturday, December 01, 2018

Fear. It's Coming Again. A Post for World AIDS Day


Is lessening.


We aren't listening.

We, the LGBT+ community, aren't listening to our own history. We've been distracted by the progress made, medically, the advancements made, scientifically, and the benefits resulting, from the research. These are things to celebrate. They are things that have been life giving, life sustaining and life extending. They are modern miracles created in labs by people of determination. We, the LGBT+ community, fought for this, fought for our survival, and to the extent that these are available, we've begun to feel like we've won. But.


Is lessening.


We aren't listening.

We are not listening to our history. We are not listening the the lessons learned from the dark times. We are blinkered by the hope of better medications and new scientific breakthroughs. But the history of this disease isn't only a history of scientific inquiry. It is also a social and political history.

It is a history of abandonment.

It is a history of our disposability.

It is a history of hatred.

People didn't care. Remember that? People just didn't care. We were dying by the thousands and people didn't care. Our lives mattered only to us. Our community was devastated both by disease and by the indifference of others. AIDS became a joke attached to our community. Remember those ugly one liners? Remember the laughter. We were dying and they were laughing.

Punishment. They called the disease a just punishment. For the sin of loving. For the sin of forbidden touch. Our world was falling around us. We couldn't keep up with the deaths. And we were told it was our fault. We were unnatural. We were singularly sinful. We were hated by a just God who finally was taking his wrath out on us. We were dying and they were delighting in our deserved fate.

Research and resources were made available grudgingly. "Let them all die," was the angry response to spending dollars to find a cure or a way to extend life after diagnosis. We had brought it on ourselves with our filthy lifestyle and dollars shouldn't be spent that would end up just encouraging more of that behaviour. The behaviour of loving.

It was the behaviour of loving that galvanized us to fight back. Activists took to the streets. People living with and people dying of AIDS became spokespeople, advocated with a strength that astonished everyone. We took each others ungloved hands, and we marched forward. The behaviour of loving is an amazing force.


Is lessening.


We aren't listening.

History tells us that attitudes towards us can turn on a dime. We may have pride parades, we may have become a consumer group, we may be able to marry - but all it takes is a crisis. Of any sort. And the hatred is back. Hurricanes his Florida? Gays caused those. Earthquakes shake the west coast. Gays cause those too. We even have the power to cause freezing cold weather. 

The hate isn't gone.

It's just parked.

It's just waiting to be mobilized.

It's waiting for our complacency. 

But the lessons of our history, remembered today World AIDS day, are important. We need to remember the strategies of resistance, the methods of channeling outrage into change and the ways of coming together. We need to remember the feel of our hands joined together in community. We need to remember those that were lost, those we are still losing, and we must remember them in context of the times in which they lived. The time of laughing and hatred and blame. They died, many of them, to the scorn of the world.

We must remember their scorn.

We must remember their hatred.

We must remember their cruelty.

Because it's coming again.


Maintains vigilance.


We've listened.