Saturday, March 31, 2007


We flew into London last night and were grateful that the hotel bar was still open. We wanted a drink and a bite to eat. The flight had been fine, but long. Joe took the luggage upstairs and I ordered drinks and got set up at a table. While the bar was not crowded there were a number of other travellers gathered at different tables. All looking tired.

Beside me was a young man, clearly looking distraught. His friend was at the bar getting a couple pints of Stella. When he returned they dove back into a conversation that had obviously been running for some time. The guy who I had first noticed sitting alone had just been dumped by his girlfriend - that wasn't all the guy she dumped him for was another mate. He was devastated. They talked and the emotions felt were the stuff of opera - classical and soap.

I was reminded of a while back doing an abuse prevention workshop for people with disabilities. When we were talking about emotions one man with Down Syndrome got up and pointed at another guy in the group. He talked about being angry and sad. About his former friend running off with his girlfriend. She, the woman in dispute was sitting in the front row, and like most women in this situation looked both troubled and pleased that these two men wanted her.

Even though I have worked in the area of sexuality and disability for years, I have to admit that I needed to stop myself from thinking that this was cute. If it was tragic to be betrayed, to lose love for the guy in the bar - it was tragic for this man with Down Syndrome to be going through the same thing. His heart was broken. Truly broken.

Real lives have led to real joy but it's also led to real pain. Pain that we must take seriously. Pain that's understood. Pain that's comforted.

I wonder if that young man with Down Syndrome had a friend who would sit and let him cry into his beer like the guy beside me. I wonder if he would be taken seriously as he spoke of his past girlfriend and his former friend.

I hope so.

Friday, March 30, 2007

The Thing

Um, it's winter.

Well, early spring.

Which in Canada is ... winter.

But here in Windsor it hit 35 degrees! The sun beat down and you could almost see the flowers grow. Joe and I hit the mall for a haircut and on the way out I stayed on the sidewalk and Joe went to get the car. I sit on sidewalks a lot more now. Frankly, I enjoy it.

There is a sidewalk life. Smokers out side smoking. Co-workers outside complaining about the boss. Friends chatting before having to leave. It's a glmpse of life I've never known before. But there are also others like me, waiting to be picked up - enjoying a brief moment alone, a brief moment of complete independance.

For a second a large shadow loomed over me and then passed as quickly as it came. I looked up and saw a man with a disability in his twenties stop, survey the landscape and then set back on his heels. He's waiting. I recognize the stance now. Alone and free. He was trying to quickly eat an ice cream that was running pell mell over his fingers.

He caught me looking and smiled.

"This is the life," he said.

I was feeling chatty so I asked, "What the ice cream?"

"No," he said, "the ice cream, the sunny day, the whole thing. The whole big thing."

"Yeah," I said, "It is the life isn't it?"

I noticed that others, listening, had begun smiling too.

Quality of life - it's odd that it isn't about having education.

Quality of life - it's odd that it isn't about jobs and status.

Quality of life - it's odd that it's not about the things parent's worry about.

Teachers teach about.

Philosophers quarrel about.

It's about ice cream on a hot day.

"The whole big thing."

Thursday, March 29, 2007

My Diagnosis

"I feel sorry for you." Paul approached me with real concern on his face. As he explained how people 'like me' with physical disabilities caused him to feel pity, I wondered how to address the issue. Pity usually angers me. This time it confused me. After all he had Down Syndrome, we are both people with disabilities it's just that we have differing disabilities.

I said, "But you don't have to feel sorry for me ... it's like ..."

"But I do feel sorry for you," Paul said interupting me and went on to explain, "because you are different. Being in the wheelchair ..."

"It's OK to be different," I now interupted him, I really wanted him to get this. I thought I could make connection through the fact that he had Down Syndrome, surely that was the way in to a discussion he really needed to have, "Like you are different too."

"I'm not in a wheelchair," he protested but before he could continue I jumped in.

"No, but you have Down Syndrome."

That stopped him.

He thought.

I love these conversations of revelation with people with intellectual disabilities. I just waited. I knew Paul was processing what I said. It's like watching a photo develop, give it time and the sharpness is amazing. I waited, as his ideas grew clear in his head.

"Yes," he began hesitantly, "I got Down Syndrome when I was six."

I smiled.

I've heard this before. Six is probably when he hit the school system and suddenly that extra gene really mattered. For the first many years of his life he'd just have been 'mom and dad's kid' - school changes a lot. I can see 'getting Down Syndrome at 6'.

"But," Paul brightened wanting to keep the discussion going so he pointed to his temple and said, "I only have Down's up here. I don't have Down syndrome in my legs."

I wondered then if he thought 'Down Syndrome' was just another name for disability.

"So because I'm in a wheelchair, I have Down Syndrome too?" I asked.

That stumped him, but he thought. Finally, "No, it's not the same. You have ... you have ... sit down sydrome."

Laughter burst out of me. He grinned too, though I don't think he was making a pun. Paul's world is defined in simple ways.

I'll never think of my disability in any other way.

I'm finally diagnosed.

"Hi, my name is Dave and I have Sit Down Syndrome."

Wednesday, March 28, 2007

Send'er Down

"Send'er down Jesus. They're the one's who pray for sun. I'm the one who prays for rain!!"

With a shout he shot off.

I was sitting in my wheelchair just outside the grocery store waiting for Joe to brave the elements and bring the car up to the door so I could get in without getting to wet. The day had turned from a hot sunny one slowly in to one with dark clouds threatening rain.

When we dashed into the grocery store to pick up some stuff for the hotel room, I noticed him sitting outside chatting to those who came in. He's one of those guys with disabilities that you see in every town, sitting in similar doorways - part of the brick and mortar of the place. Known to everyone without being known by anyone. Other cars pulled up and people piled in.

Just as Joe arrived I heard the shout.

"Send'er down Jesus. They're the one's who pray for sun. I'm the one who prays for rain."

Then he grabbed his wheels and was off like a shot. The rain pelted down on him and he moved like lightening. As Joe was getting in the car I was saying, "Look, look at that guy in the wheelchair." Joe said he didn't see anyone but I did I mean the guy that was chatting with everyone when we went in.

"Ya," I said and told him what the guy had said. By the time we got to the entrance to the parking lot, the wheelchair prophet was sitting waiting for the light. The rain puddled around him and he just smiled.

"Send'er down Jesus!" we heard as we drove away.

I'll just bet that heaven knows the guy who prays for rain.

The guy who's prayers sound different.

The guy who isn't whining for sun, for money, for good days.

The guy who prays for rain.

What a relief to hear from someone who isn't asking for wants or wealth or women.

Who doesn't want God to be a Merlin making everything magically better.

Constantly spring.

Forever joyous.

"Send'er down Jesus. They're the ones who pray for sun. I'm the one who prays for rain."

This is why.

Completely why.

The world needs diversity.

Because who else but a guy in a wheelchair in Windsor would, on a sunny day, pray for rain.

"Send'er down Jesus!"

Tuesday, March 27, 2007


Her face stopped me cold.

I was leaving the lecture room I'd spent the day in at Community Living Windsor and I paused to put my gloves on - they give me better traction for pushing the chair. I noticed that I'd stopped by one of those information boards that agencies use to travel around and set up. This one was quite lovely. It had picture after picture on it of people with disabilities living their lives.

A sucker for photo albums I had to look over the display. I'm one of those really strange people who like it when old ladies pull out photo albums and take me on a long tour of their lives, their loves and their relations. I even like people's movies of their vacations. These are opportunities for a glimpse into another life. So I stayed by the board for some while.

One photo drew me back often. It was of a man with a disability working at some kind of machine. The kind of contraption that you'd see in a machine shop. His hands were paused, midair, as he looked directly into the lens of the camera with a great big bright smile.

I don't know if the smile was because he was enjoying the attention of the camera or if he was smiling because he was working somewhere cool, doing something cool or if he was smiling just because - just because he was happy. Either way, it was nice to see. Then the other pictures drew me in. Smile after smile - a face of a guy with Down Syndrome in a pool, his beard sopping wet, holding on for dear life to a swim instructor in a swimming pool - a face of someone grinning to beat the band while out in the community.

Because I work so much with abuse. So much with people who are troubled, in trouble or causing trouble - I can forget.

And this board of pictures did more than inform me about the Association and the work it did, it brought to my mind of the many many joyous times that I've had in care to people with disabilities. I needed reminding.

There is only constant night if you sleep during the day.

Just before leaving I looked at the big strong man - with the big strong smiling face.

Those hands, suspended in mid air, lifted me.

As big as I am.

They lifted me.

Monday, March 26, 2007



Two movies in one weekend. Heaven.

"Teenage," "Mutant," "Ninja," are three adjectives that I never thought I'd see modifying the word "Turtles" but I'm thankful for that kind of creativeness. I've seen the three previous movies and there was no way I'd miss this one.

I was being pushed into the theatre and we waited patiently for the young woman to check the tickets of the family in front of us. She was noticable primarily because of her desire to not be noticed. She never looked up. Never looked anyone in the eyes. Her lack of self esteem radiated out from her. I always feel the desire to get up and hug someone like this but I never do, never would and understand that the desire is patronizing in a very deep way.

So when we got up to her I was the only one able to see her face because I was sitting in my chair. I noticed a small rose coloured birthmark, maybe the size of a dime, on her left cheek. She was beautiful, almost stunning actually, and the birthmark looked like it might have been left from God's peck on the cheek. It added to her beauty. Really.

But her face was down, she didn't look up.

I was deeply saddened.

How have we come to live in a world where a beautiful young woman can't cast her eyes in mine?

What messages about perfection and imperfection has she been given?

By whom.

So I watched a movie about how mutant turles save the world.

And all I could do was wish, somehow, that I could save her.

Sunday, March 25, 2007

Miss Manners

"Yeah, I do!"

Four of us got together to go to a movie this afternoon. This is a rare event, it's hard to find a time when all schedules allow for us all to go on an outing. We'd decided to go see 'The Last Mimsey' forgetting that this was Saturday and the theatre would be full of children. That is until we walked in.

Now, being in a wheelchair, I have only two seating options. Left or ... Right. Upon entering we saw the seat next to the disabled spot taken by a family. None disabled. None in a wheelchair. I said, not to them but to my friend, "Maybe the other wheelchair seat has space." Then I looked up to see that it was full, too, again with a family without a disabled member. This meant that I would have to sit by myself beside a group of strangers. Fun. Wow.

The people closest to me refused to even look in our direction. But the other family, noticing, said, "Not to worry, we've got lots of other places to sit." They got up and thusly made room for all of us. As I was wheeling back into the spot I noticed that the kid sitting behind me would have a bit of trouble seeing over me because I sit tall in my chair. The kid said to his mom, "Does he have to sit THERE?"

"Yeah, I do," was all I said.

Sensing an oncoming scene my friends started thinking about options. I said, plainly, "I have only two choices, they have over a hunderd. I'm sitting here. What else am I supposed to do?"

The mom behind was clearly upset and had her son move to the seat on the other side of her. Muttering and grumbling about my blocking his view.

Excuse me.

Excuse me.

I mean, excuse me.

What the hell happened to consideration for others? Isn't that something a parent is SUPPOSED to teach to a child? Isn't that part of the job? Isn't selfishness to be discouraged?

Is it me ... or is anyone else mourning the loss of just plain decency?

I actually miss manners.

I know that I can be crusty, but only when I need to be. I don't expect the world to make every accomodation for me ... without me having to make the occasional accomodation for the world.

There were only two spots for people with disabilities.

Sorry I had to use one.

Luckily the movie was wonderful, charming even. And as the story unfolded I thought more about the family that got up and gladly moved and less about Momzilla and monster boy behind me. There still is kindness in the world.

But even so the would would be better with the occasional "please", the passing "thank you" and a smidgen of flexibility.

N'est pas?

Saturday, March 24, 2007

New Questions / Different Answers





I spent the day interviewing candidates for an internal posting. We are looking for sexual health educators and a wackload of staff had applied for the position. Angela and I had looked over their resumes and their letters of application and then the interviews began.

As always, these days, I was struck at the youth of those coming forward. But I was also struck by the incredible maturity of each person we spoke with. They had all come with experience, all had worked for a while in the field of disability.

But these kids have come from the brave new world of community living. My first job was in an institution. There wasn't even really the slightest idea that those in cages could be those in community. We did our best to give a quality of life, but in fact, we were captors - plain and simple. Our discussion about those in our care at our staff meetings didn't focus on 'people' not really - we focused on problems and programmes, progress and punishments. It was so very simple.

We would never have sat around and talked about rights - to relationships, to education, to choices of partners. We would never have talked about heart and head and hand. We just wouldn't have.

But they did today. They all knew what it took me years to understand.

That people, all people, have rights.

That people, all people, can love.

That people, all people, deserve respect.

I don't think that any of them learned these things from staff trainings, from retreats or books or lectures. I think they learned them from simply working in the community, with community values and community contact. I think that they didn't have to open their eyes to rights - because their eyes had never been closed to the idea.

It's going to be ok.

We're going the distance.

Friday, March 23, 2007


"What if he's just an asshole?"

I'll never forget the line, nor the impact it's had on me all these years later.

Lina and Jon and I were discussing an issue of some import - an issue that would affect the lives of other people. They had discussed it thoroughly and were coming to me to add some fresh air to their discussion, to get another perspective. As I listened, I remembered.

The movie was called, "Nuts' and it was a forgettable Barbra Streisand movie with an unforgettable scene. In it a psychiatrist was giving testimony as to her character's sanity. Babs stands up and delivers the line to the judge.

"What if he's just an asshole?"

What, she was asking, if his opinion isn't because of his expertise, his book learning, his experience ... what if his opinion is because of his power, his temper and the fact that he's an asshole?

There are times when I'm writing reports that will affect someone's freedom of movement ... I stop and examine myself. Am I just being an asshole ... am I doing it because I can? It's a harsh question to ask oneself but one of fundamental importance. This maybe one of the most important tools in the therapists arsenal. (Maybe that's why they call it an aresenal.)

Power is more addictive than heroin.

Power is more habit forming than nicotine.

Power is more likely to turn human into asshole than drugs or drink.

And it's not just me. And others like me.

I remember talking to a parent of a young man with a disability. This young guy didn't want life in a sheltered industry. He wanted to be out in the world. He wanted to try real life. But Mom had her mind set. He would be protected ... damn it. He would be protected from life, from experiences and from his own mind. He was shattered by both her decision and her lack of faith in him. He didn't know what he did wrong - other than the accident of his birth.

In polite dispute with her she looked at me and said with finality, "I am his mother."

I thought to myself, "No, you're just an asshole."

As I'm still living, you know I didn't say it.

But it helped me keep perspective. This wasn't about parenting or about love or about care ... it was about power, pure and simple. You know how I know? Love is the opposite of tyranny. Parenting is the opposite of control.

I listened first to Lina and Jon and then joined in the discussion - after checking first to see if the 'asshole impulse' had been firmly kept in place.

It had.

It was now safe to speak.

Thursday, March 22, 2007

Lisa's Mom

You know how you smell vanilla and suddenly remember your Grans kitchen?

Or you see a robin at your feeder and suddenly remember looking out your gradeschool window?

Or you hear the theme song to "The Young and the Restless" and suddenly remember Lisa's mom?

Years ago I used to consult to a variety of agencies and families in a small community north of Toronto. I had the luxury of scheduling my own appointments and sometimes that kind of flexibility leads to temptation. I yeild to temptation for what is temptation for? Lisa's mom, I discover is a devoted fan of the Young and the Restless and popular North American day time soap opera. "Me too!" I said excitedly after she told me that the time I'd offered to meet conflicted with her "soap".

Problem was, that was the only time I had that week. She asked shyly, "Well, we could watch the programme together and talk during the commericals." That started a set appointment that I was not late for and did not cancel for just over two years. Lisa had a fairly serious problem behaviour and we talked and strategized during the commercials - in truth I think Lisa's mom liked the company as much as the consultation.

One day when I arrived the television wasn't on and Lisa's mom was busy in the kitchen. "It's just you and me this week," she said, "the programme has been cancelled today."


"The US president has a press conference or something."

"Damn him!" We both laughed.

"Can I ask you something?" she asked. I could tell that she was worried about something.


"Have you always been ... you know?" She couldn't even look at me.

"Fat?" I finished her sentence.

"No, no, I meant 'big'."

"Listen, I don't mind the word fat. I am fat. Really fat, truth be told. It's OK. But the answer to your question is, yes. I've been ... um ... big ... since I was a kid."

Suddenly she started crying and saying, "Sorry, sorry, sorry."

I had no idea what was wrong. It's best when people are upset to let them be upset. Why say, "It'll be OK" when you don't know what "it" is or that it indeed will be "OK".

Finally she finished and said that she wanted to talk to be about how people always stare at Lisa. She said that at first, when Lisa was a baby people didn't really notice she had Down Syndrome but now it was obvious and people stared all the time. Made comments to one another - some even pointed.

"I've had to fight with my family, fight with the school, fight with the neighbours. All it seems I'm doing any more is fighting for Lisa. And I don't mind. But the fights kind of gone out of me these last couple of years. I don't want to fight everyone, everything, I don't want to have to be grateful for what others take for granted. And I don't want to start fearing taking Lisa out because I can't cope with what she can't see."

"And you want to know how I cope with it."


"It's fairly simple," but my eyes welled up with tears, "but I don't often talk about it."

Now she was apologetic and wanted to back away from the conversation.

"No, it's a good question."

Pause, not for drama but for breath.

"I cope because someone loves me." There it was said. "I'm not alone in the world."

I looked at Lisa's mom and continued, "Have you ever made it through a difficult time only because someone loved you and believed in you?

She nodded.

"That's the power of love. But I'm not saying that you don't talk to Lisa about being different and don't talk about people staring. Of course you talk to her, let her know that people will react to her difference but that difference isn't wrong."

"That seems too simple."

"Listen I grew up in a family that was ashamed of me. Fat. Clumbsy. Stupid. Those were the words I heard as a kid. Sometimes, even now, when I'm not on guard, I still call myself those names. Childhood was torture. I spent all my time wanting to be something else, something approved of ... but I didn't know how to not be 'me'. Even when I tried faking it, I faked it wrong. I hated life and I was caught. I hated leaving the house and being public but I hated being home and being glared at. There was no where safe."

"What happened."

"When I was sixteen, I met someone who loved me. My world changed - I didn't have to be different anymore. It might have been the most powerful thing that's ever happened to me."

"But I do love her. I can't believe how much."

"Don't just show her, tell her. Let her know, down deep, that she's truly loved."

"And she'll make it?"

"I have."

Years later I was doing a series of relationship training classes and there came Lisa through the door. She didn't remember me but greeted me warmly anyways. I sent a note home with her to her mother.

"Do you still watch 'The Young and the Restless?'"

I got a note back, "Do you remember the day that it was cancelled?"

I did.

Wednesday, March 21, 2007


I met her on paper first.

Never a good idea.

We drove several hours to meet her. There was a good chance she'd be moving out of the large institution and into our care. The file was daunting. Her behaviour frightening. Prospects predicted, hopeless. But drive we did. We talked about the concerns we had, both with moving someone with a tough history of behaviours and with our capacity for caring for her. Would we be up to the task?

We meet for several hours and talk. Talk. Talk. Everyone speaks up and her life is drawn, not in colours and hues, but in black and white. Stark. At the very idea of community living heads shake. Failure it seems is assured. She'd tried before. Failed. Failed. Failed.

Then we ask to meet her.

We listen to warnings.

And then ask again.

She is sitting playing a computer game. She seems drab. Lifeless. Stares at the screen and looks up at us with little interest. She was hopeless. She'd given up more than hope. It was like she'd given up joy. Even so we chatted with her.

Said, "Goodbye."

She nodded. It was a word she'd heard often.

Cut to today.

I'm in my office meeting with Manuela and the first hint I had of another presence was the smell of Lysol. I glanced up and saw that a woman with a disability was approaching my office ready to clean the handle on my door with a rag soaked in disinfecting cleaner. My hands have never ever been dirty enough to require that strength of solvent - but I smiled and said go ahead.

Manuela was watching my face. I felt her gaze.

Then it hit.

I shot a look at Manuela and said quietly, "Oh, my God it's her."

She heard me and looked up from her cleaning and pointed at me, "I know who you are!"

"And I know who you are!"

The moment of recognition as she recognized me as the guy who visited that day in the institution split her face wide with a grin. "I want to talk to you again," she said and we decided to meet tomorrow for a chat.

Her face.

You should have seen her face.

It was full of life.

Her eyes.

You should have seen her eyes.

They were bright with purpose.

Her body.

You should have seen her body.

It was as if she was carried, as if freedom had the boyancy of water.

Her movements.

You should have seen her movements.

There was real purpose and pride in her job of cleaning my door.

I want to meet this woman. Reputation made of paper.

Tomorrow we shall chat. Character colouring in between the lines of black and white.

Tomorrow we shall meet.

Both free.

How incredibly cool is that?

Tuesday, March 20, 2007



I don't even understand pig latin. But these three words appeared in a book I'm reading called 'Dark Fire' and stars a man with a disability in a time that didn't welcome any kind of difference. The book, set in England under the rule of Henry VIII and Thomas Cromwell, presents Matthew Shardlake as the 'sharpest hunchback in court'. 'Dark Fire' is the second of the series (and should be read thusly after 'Dissolution') and in it Matthew runs into the motto 'esse quam videri' which means 'be it, don't seem it'.

I read those words and, like many times in reading Sansom's Shardlake series, I paused and thought for a long long time.

As I paused, I reflected.

As I reflected, I prayed.

This series is changing me.

I'm not sure if the words are advice.

Or challenge.

For me, I think, they are challenge. To break down the artiface that builds around us in day to day interactions, to smash the barriers that are constructed by the social roles we take, to bridge the moats dug deep to protect us from those hurts borne early ever being borne again.

I put these words on the masthead of my blog as much for me, as writer as for you, as reader. I wanted to remind myself that my goal is to become more real as time passes. Simply put, I want to 'be it, not seem it.'

Yet acheiving this goal sometimes frightens me. A couple of times the last week consulting and training and facilitating - who I really was came out, all the passion, the fury, the intensity - and I startled myself as much as anyone else. It was like I was reminded by something deep that I really did, and really do and really always have deeply cared about what I do. About where we are going.

And again, just moments ago. Thinking about going back to work today at my home agency of Vita. Thinking about the process of change that we are going through - a process aimed at increasing the voice of those in care, at increasing the skills of those who serve and increasing the resistance of the system from becoming uncaring. I've seen so many changes this year. And suddenly, I really really believed that it was possible for the system to be human and humane, for agencies to be governed by realization and for gentleness to become practice.

We all present our work as good and our goals as pure.


esse quam videri

Monday, March 19, 2007


It's my last day in Norfolk and I'm meeting with Hope House staff in the morning and parents of the participants in the afternoon. With both groups we are going to look at new policies regarding sexuality and talk about how these policies fit into an overall plan to keep people with disabilities safe. After the morning session with staff, I have a cup of tea and gear up for meeting with the parents.

As we began we talked, of course, about the policies. But the discussion turned into a conversation and like all good conversations covered a lot of ground. At one point a number of different parents talked about their adult children and about their concerns for their safety in the community.

"He's so trusting," said one.

"Friendly," said another.

"Caring," one more.

They all saw the highly positive character traits their children had. Yet they understood how these self same attributes could be misperceived and lead to trouble. As they gave examples there was a sense of both pride and fear. Pride that their children were so loving and giving and fear that we live in a world where 'loving' and 'giving' where 'trust' and 'faith' had become character flaws rather than character boosters.

Then it was said.

"Wouldn't it be great if the world was as good a place as people with disabilities thought that it was?"

There was a moments silence. We all pondered that thought.

Thoughts flickered across each parents face. Images of the hard lessons that their children had to learn. Ideas about how to curb loving enthusiasm and indescriminate caring. Determination that their children would learn and survive - even thrive - in a world that is far less than perfect.

A moments silence.

To contemplate heaven.

A moments silence.

In mourning for a world lost.

Sunday, March 18, 2007


Sitting around chatting.

One of the reasons we work is to meet social need. Yeah, we've got important business to do, but it's nice to sit around and chat. I was chatting with Paula from Hope House as I was waiting to get started with another full and busy day. She was telling me that she had just got back from a conference in Boston and that the conference was fun and full of information. But more than that, Paula's from Boston originally so it was nice for her to just return home.

While there she had the chance to talk to her sister who is the mother of a daughter with Down Syndrome. As Paula is in the 'helping industry' she and her sister have had many a discussion about disability and parenting and adulthood - the whole ball of wax. Her neice is her own guardian and Paula's sister told her that at one point recently she had some questions about benefits but when she phoned to ask those questions they couldn't be answered. Her daughter would have to give permission for the worker to give out any information even to 'mom'. Being her own guardian she was in control of that information.

It took a while for the worker to contact Paula's neice to get consent to discuss benefits with her mother but it was worth the time and energy. Then the worker called 'mom' with a question in her voice. It seemed when talking with 'daughter' the worker had discussed disability and was surprised to be told that her disability was in her legs. The file said differently, the file said "Down Syndrome". 'Mom' was confused at her daughter's response but assured the worker that the disability was indeed "Down Syndrome" as recorded.

After talking to the worker she phoned her daughter and asked about the phone call.

"Did you tell the woman that you had a disability?"

"Yes, I told them about my legs."

"But you don't have anything wrong with your legs."

"Yes I do." Her daughter was adamant.

"What's wrong with your legs." Mom was concerned, was there something she didn't know?

"They are too short they don't touch the floor."

At that point Paula, Joe and I burst out laughing. Yeah it's funny, but yeah it's cool. She didn't see her Down Syndrome as a disability worth mentioning. It wasn't stopping her from doing much. It wasn't stopping her from living life, loving life and enjoying every day.

If only her legs were longer.

There is a deep lesson there, underneath the laughter, about what disability really is.

And what disability really isn't.

Thanks Paula, for letting me tell the story. I hope I did it justice.

Saturday, March 17, 2007


I was about to do a consultation with the participants who receive services from Hope House. We were there to talk about the new policies on sexuality and wanted input from those who they would affect most. One of the women who came was a young woman with Down Syndrome. She sat down, looked at me, and said, "I was abused. I want to learn to protect myself." She set her goal clearly and she defined the parameters of the discussion. The goal of all policy is that people be safe.

Later when we played a 'relationship game' she got the question, "Your boyfriend tells you that you can't have any friends but him, what would you do?" Her answer was swift, "I'd dump him. There's more where he came from." I laughed because there couldn't have been a better answer. Then she talked about her 'conditions of respect' for her boyfriends. There was a long list, as she gave them others joined in and the list was good: respect my boundaries, I decide if I want to have sex not you, don't steal from me, don't swear at me, don't lie to me, don't cheat on me, tell me that you love me."

She sat back, proud of the fact that she knows what she wants from a relationship. I was immensely impressed. I don't know who taught her the 'conditions of respect', I don't know if it comes from a curriculum, but I loved the idea.

I love the idea that all people, not just those with disabilities, have a right to set conditions of respect. I love the fact that she taught me something new that set my mind racing well into the night.

I think the idea is bigger than sex, bigger than relationships ... but should be a fundamental of sex and relationship education.

This is why I do consultation with people with disabilities - it's like a crash course in 'real life'.

Congratulations to those who parented her, those who taught her.

Friday, March 16, 2007


At around 5:30 they all started to gather in the Hope House common area. Most came straight in and choose a seat, ready to participate. I noticed one guy with Down Syndrome hanging by the door, clearly not sure he wanted to attend. I'm used to that hesitation, I even understand it. Usually one of three things is going on, the topic is sexuality, the topic is abuse, it's called a class and many have learned that they failed in things called classes. One of the women who was to help me with the class approached me and asked if he could sit over by the door, round a small corner and just listen. That's all he'd give. Was it enough? Yes. Of course.

So I began the class watching over to where he was sitting out of the corner of my eye. At first all I could see was his shoulder, the rest of him blocked by the corner he sat behind. About 40 minutes in he was laying on the couch looking into the room. I smiled inside, I knew he was pretending to just lay there in boredom, but even from where I was sitting I could see interest flicker on his face and once he even laughed.

I never take breaks in these classes. I find it difficult to get them all back into it but I took a risk. When a lovely woman up front asked permission to go to the washroom I said, "Let's take a short break."

And then I prayed.

I so wanted him to get up and come join us. Be part of the group.

And he did.

As people reassembled he was sitting right up front. I said nothing to welcome him, nothing to single him out but I gave him a smile, he smiled back and I knew connection had been made.

The class ended by a 'quiz show' and he even got up to answer a question for the men's team. He had come on his terms and he left on his terms. Thank heaven's that over the course of learning to teach people with disabilities it's become apparent to me that you take what people give, you let people grow as they so wish, you allow them to be the source of their own power and motivation.

He left the class successful. Proud of himself.

If he learned nothing from me, he learned a lot from himself.

And that's enough.

Thursday, March 15, 2007


Last night was a big night for me.

Ever since being hit by the catastrophic illness that resulted in my disability I have been very careful with my health and my hours. The doctor had told me that I could expect my energy to return in 6 or 7 months, but it did not. I went to bed, now, earlier than my parents sent me as a child. So I have always ended my work days while I felt strong and took care never to really exhaust myself. No more hospital beds for me.

Then when I got the schedule for my work here at Hope House there were several evening events - primarily so that I could get the message to part time staff (last night) and people with disabilities, tonight and tomorrow night. I decided that I wanted to try. See if I could still do it. I recognized that I was feeling stronger. That over the last few months I wasn't as burdened by life as I had been.

So, I gave it a shot.

Hope House has managed to get themselves staff that have energy and passion. Don't know what questions they ask in interviews but they are obviously the right ones.

As I sat waiting to start pressing down my usual nerves and quieting my 'will I make it' concerns. I listened to them chat, laugh and eat the pizza that had been brought in.

The lecture was on something I really care about 'supporting people with disabilities who are being teased or bullied' and once I got started I got into it. Only once, about midway, did I feel my energy flag and there was momentary panic that I wouldn't make it. But they, the audience, were so into the lecture that they almost injected me with the energy I needed. If they could be there, be alert and be passionate about my words - then so should I.

It was over.

I did it.

I had given up to disability something that it had not claimed.

There is new territory under my command.

It feels good.

I said all this to Joe on the way back to hotel.

"So, I can book you to do evening work again?"

I thought, "No, but because I don't want to, not because I can't."

There is a really big difference.

Wednesday, March 14, 2007

Kitty Carlyle

I thought of them yesterday during breakfast. A couple, our age, was having coffee together a couple tables away. At first he was wearing something that looked like a choker-style necklace and my immediate cattiness thought, "He's a little old for that fashion." But then as he walked by I noticed that it was one of those medical things attached to his throat, for breathing I think, that was made to look cool by the addition of a leather strap. He must have worn it for years because he and his wife seemed to be chatting and getting on fine - assistive device or no.

And it shouldn't surprise me.

Just after we moved to Toronto, Joe and I had taken the streetcar - bus out to Sherway Gardens where we wanted to check out the mall. While there we popped into a pet store and fell in love, instantly, with Carlyle. He was a beautiful white cat with eyes that had only the faintest tinge of blue. A small beauty he was and in seconds he was ours. We got a cardboard box and were on our way home.

A typical kitten, we didn't notice anything for about four days. Then one day when I was cooking supper, I dropped a pot right behind where Carlyle was drinking water. He didn't move. Didn't even look up. "Joe," I called. Sensing something in my voice he came right away. "I think Carlyle is deaf."

We banged pots, made all sorts of silly noises but Carlyle paid us no heed. Yep, we had a deaf cat on our hands. The vet confirmed that Carlyle had albinism and as an albino was much more likely to have hearing loss. "Do you want him put down?" Was the first question.

"What! Think makes Carlyle even cooler," I said. "He doesn't even know he's deaf, that the world has sounds. It's not like he's suffering." Sheesh.

Later that year, I was at school where I was working in a classroom for kids with physical disabilities, I was telling some of them about Carlyle.

Wendy, a young woman with cerebral palsy and honestly one of my favourites in the classroom, and I were sitting at the lunch table after everyone else was gone. I could tell that she was purposely eating slower. "What's up?" I asked.

"Is he, you cat, is he," she paused and looked away. I could see some tears in her eyes.

"Is he what?" I asked as gently as I could.

"Is he still, like, a cat and all. Even being deaf, is he still a cat?" There was such seriousness in her voice. I knew the question she was asking.

"Yes, he's still a cat. In fact the deafness doesn't even slightly affect his 'catness'. Why would it?"

"OK." Was all she said and she dropped the subject.

I thought of Carlyle and Wendy watching that couple. Yep, he's still a man. The disability doesn't take away humanity though in many cases I've seen it enhance the human condition.

Sad she had to ask, though, isn't it?

Tuesday, March 13, 2007



I really wanted to see the movie. Waited for it with anticipation. As such I read much about the movie.

Yet no one warned me.

The movie begins with a scene that has a baby being held over a precipice being judged. Meeting a standard, the baby lives. But one view, from below, shows the skulls and bones of babies that were dropped, destroyed because of disability or difference. The image was chilling but 'fair enough' this was a historical fact. Many cultures - like our own - eliminate the difference as efficiently as they can. Ours uses science and genes, others used cliffs and rocks below.

But the film goes on from there to become the most disphobic film I have ever seen. Images of disability are paired (like they were in The Passion) with evil, with treachery, with lust. Never for a second are we allowed for feel any compassion for those with differences - they are there to provoke disgust. There is a message, one of the disabled who escaped their fate of death because of parental love is the villian of the piece. The whisper 'he should have died, he should have died' is subliminal but is there.

The movie is disturbing enough. But more disturbing is that not a single review I've read has mentioned the disability-baiting aspect of the film. There seems to be no compulsion to hold film makers accountable for their images, for their messages about 'death to the disabled'.

The black community, the gay community, both have come together to give out awards to film makers who give positive representation of each minority. Why don't we follow suit? Why is there not a media watch dog for disability - to alert us to negative images and to laud those with positive images.

How do we begin one?

Who could host such a project?

Could it be part of one of the disability film festivals?

I don't know, do you?

Monday, March 12, 2007


Two tiny breasts peeked out from between dirty fingers. No matter how much she was asked to set her doll down, "Topless Barbie" stayed in her grasp. We were in, no kidding, Pocahontas Pancake and Waffle House in Virginia Beach and the place was packed. It's holiday time, what with March break so there were families and kids everywhere.

I saw her immediately. I love the look of a resolute face - child or adult - determination is attractive. And she was determined. No way she was letting go of her Barbie. Somewhere along the way Barbie had lost her top and her two pink breasts were in stark contrast to hands that had dug sand and had refused washing. Somehow I could understand why she held so tight. The three adults with her, two parents and a grandmother, kept trying to trick the doll away. Kids don't like to be tricked.

Pointing her out to Joe, I heard myself speak, "Kids know when adults are being duplicitous." Bang. She was back in my mind. Nat had moved out of the institution bringing her wild hair and her frightened eyes with her. She had little. Wanted less. "Almost like a feral child," the psychologist had described her to us. Didn't seem to want affection or even contact with those around her. She could sit in a corner of a room and become invisible.

But she never sat alone. She had a doll too. Not a Barbie, not that upscale, maybe Barbie's second cousin from the mountains. The doll had lost most of it's hair but what remained was coiffed like Nat's. A wild tangle. Nat could speak. If swearing and threatening could be called speech. At our first staff meeting one of the female staff looked defeated as she said, "It's like she hates us. Really hates us. And she doesn't even know us."

The supervisor, a very very cool guy, said, "She knows us. She knows staff. For some reason she's lost trust in the system. Trust in us. That's our primary job. Getting it back." At that same staff meeting another staff brought up her doll. The words 'age inappropriate' were used. The supervisor bristled, "She's lived an inappropriate life, let her have whatever she needs. I never want to hear about that doll again. It's hers. Leave it alone."

We knew he wasn't kidding. We knew that he passionately cared about this. We left her alone. She carried that doll everywhere. She was never tricked to leave it behind, she was never, ever, asked to give it up. It was never washed. Never even wiped down. It was left in her care and in her way she cared.

It was a Sunday when I came in. I found all the staff quiet and the house silent. "What's up?" I asked. No one answered. The door to the office was closed but I could hear crying inside the door. Now I was worried. There were two other staff there but they were white and grave. One resident was upstairs but the others hadn't come back from church.

"What's going on?!" I near shouted the question.

"Go ahead, go into the office."

I knocked gently and hearing nothing I entered. The supervisor sat behind his desk. He was crying like a baby. In his hands was Nat's doll. He looked up at me and said, "She came in here before leaving for church, she gave this too me and told me to keep it safe for her. Dave she spoke to me. She gave me the doll. I don't think I've ever been given a gift like this."

I was crying then too, in truth now as well with the memory.

Nat gave over something she loved to someone she trusted.

That is one of the biggest leaps that a human makes on the journey through life.
Trust takes time. Sometimes lots of it.

Trust takes safety. Sometimes lots of it.

Trust passes trials. Sometimes lots of them.

"Are you OK," Joe asked.

Then I was back in Pocahontas Pancake and Waffle House. "Yeah, I'm just remembering something."



Sunday, March 11, 2007


No one noticed me sitting there.

We had parked in Virginia Beach in a disabled spot that looks over the beach and onward to the ocean. I didn't feel like getting out of the car so we did down the windows, whirrred open the sunroof and thus let the cool air inside. Joe went for a walk, promising to be back in a half an hour so we could go to the movies. I pulled out the book I'm reading, one that I'm going to buy for about 6 people I know because it's stunning, and started reading.

The car was parked beside a store that had beach fashions in the window and several small groups or couples stopped to look at the display. None of them noticed me sitting in the car, all they saw was a parked car. So I got to hear a group of teen girls yattering on about the colours and 'oh my God I just love the pleats', a couple wherein a largish woman said to her smallish husband as she pointed to a tiny blouse - "I like that top but it's not me," he nodded but kept his mouth shut, the two college guys made "kiss kiss" sounds aiming at the mannequin in the bikini, it was fun.

I set my book down and just looked out onto the sunny beach and felt the warmth of the sun mixed with the coolness of the breeze. A perfect moment broken into by sharp words. A couple, not young, was fighting as they walked up the sidewalk. Completely oblivious to me they battled. Behind them walked a woman with Down Syndrome, maybe thirty, maybe a bit more. She was having difficulty keeping up with their pace, quickened I'm sure by anger. She looked upset at the fight. Her voice was breathless, 'Mom'. No response. 'Dad'. No response. The war raged on and now they were right beside me. Stopped by the window. My, oh my, the things they said to each other.

She noticed me sitting in the car. She stared for a few seconds and then shrugged her shoulders. I smiled an encouraging smile. She got a little defensive and said, "They aren't always like this you know."

At that they looked first at her and seeing her look at me they followed her gaze and saw me sitting in the car.

"Sometimes they embarass me."

"That's why God made parents," I said. She nodded, like she was thinking about what I'd said.

I watched them walk away. Mom and Dad blushing. Daughter smiling.

The day had resumed it's course. For them and for her. I could tell because as they hit the beach the tension broke and they all fell about in fits of laughter.

As I went back to my book, I thought, "They are going to tell this story way differently than I am, but they are both good stories."

The day kept getting better and better.

Saturday, March 10, 2007


I woke up with the intent of having a 'non-blogger' day. I wanted nothing to write about. I wanted just to have a day off and enjoy having a day off. That lasted as long as the walk from my room to the hotel computer.

An email from Jon Dionne was waiting for me first thing this morning. He asked if I had heard about a case of a black guy with a disability being beaten up by white kids in Texas ... if I had heard that they just got a slap on the wrist for beating this guy so badly that he's in a nursing home learning to walk and talk again.

I had to.

I looked up the name 'Billy Ray Johnson' in Google and found the story. I ran out the 21 page article and took it with me. As Joe and I drove through Virginia Beach I read the story aloud to him, pausing for us both to react, with horror, indignation and even fury. By the time we got to the movie theatre I hadn't seen the beach, the ocean, the storefronts, nothing. And I was agitated. So was Joe who kept muttering under his breath about how cruel people could be. Driving through beautiful scenery reading about incredible brutality, that's how I spend my holidays. Fun. Wow.

So I was already in a state when I got into the movie theatre. We went to see "Wild Hogs" because we wanted a laugh. I parked my chair in one of the disabled spots and Joe went to get popcorn and pop. The front row filled up as a group of disabled people, mostly in chairs, arrived with a couple of care providers. You could tell they were care providers because they wore staff identification tags.

They had to rustle around to get everyone set and then one of the guys in a chair wanted something from the consession stand.


The nerve.

The movie was still a few minutes away from starting but she walked out there with an attitude that was clearly a slap across his face. He showed - fear. Actual fear.

I want to say this clearly to her and all like her.

You ungrateful PLOD. (Person Living Off Disability)

You are there to take him to the movie. You didn't buy the ticket to the movie. You are at work. You are getting paid. If he wanted popcorn at fifteen minute intervals it's your damn job to go get the popcorn. Who the hell do you think you are anyways - realize this, without him, his disability and his inconvienient desire for popcorn HE WOULDN'T NEED YOU AND YOU WOULDN'T HAVE A JOB - you'd be broke and left to your own devises to find victims for your pleasure.

If you act like that - like he's a piece of crap that you have to put up with. If you who are supposed to be here because you CARE, admit it you said it in your interview, then why are we suprised that people with disabilities get what they get by others in the community.

Yes, that's right, I'm drawing a direct line between you and your behaviour and the punch that put Billy Ray in the nursing home.

You didn't just get him popcorn.

You taught everyone in the theatre that it's ok to disrespect someone with a disability.

His fear taught them that he was a good victim.


Good days work.

I hope you are proud of what you do.

Friday, March 09, 2007

For Unto Us

I always feel weird.

Like I want to explain to everyone why I'm there.

Joe feels the same way too.

Macy's baby department is astonishing. The fashions are incredible. With Easter coming they had little girl frocks that were clocking in at 'drop jaw' prices. But we were here shopping for a baby boy. Matt and Alicia have a shower coming up and we wanted to get some cool stuff and get it into the mail so that it would be there in time for the shower. Our travels keep us away but I couldn't wish them more happiness. They are a lovely couple and I got to know Alicia a couple of summers ago when she came along to my summer school classes outside of Ottawa.

Anyways, as we were shopping, we'd pick up stuff and get giddy at the cuteness of it all. Out of the corner of my eye I noticed a woman talking with the clerk and I was sure I heard the word's "Down Syndrome" so I creaked my chair as close as I could to overhear. The woman wanted to buy something for her friend who just had a baby with Down Syndrome. She actually asked, "What do you get a baby like that?" The clerk actually said, "I really don't know."

Joe, hearing it too, gave me the 'go ahead' look. He says it's kind of like signalling an attack dog, but he also thinks he's funny.

I said, "I do."

They both spun at me, not with hositility but with surprise, before anyone could say anything, I continued, "I know lots of people with Down Syndrome and I know lots of parents of kids with Down Syndrome. It's kind of what I do for a living."

The woman looked relieved and said, "I just don't know what to buy."

"Boy or girl?" I asked, matter of factly.

"Girl," she said giving herself over to my easy authority.

We picked out some beautiful girly cloths, all pinks and laces, bows and blouses. In seconds she got into the spirit of it and was having fun. "So, it's like shopping for any other baby."

"Yes and no," I said.

She looked at me curiously, so I continued, "The most important gift you can give your friend is the gift of congratulations. A baby has been borne. This is not a tragedy. People with Down Syndrome grow up and date, marry, get jobs, live independently. They have a joyous trip ahead of them. Celebrate with them."

She thanked me as she went to buy her stuff.

"Remember to say ...."

"Congratulations," she said.


Thursday, March 08, 2007


I had to stop.

Joe had to roll his eyes.

It has always been thus.

When we are on a long drive, say the 1000 mile journey from Orange Beach, Alabama to Norfolk, Virginia, Joe's approach is stop for gas, stop for pee, stop for nothing else. He becomes a fiend at the wheel. Me, I can't believe we're driving by the Laurel and Hardy museum without even thinking of stopping and, really, what would 5 minutes at Pedroland have taken. So I was met will little enthusiasm when I said, "Surely we can stop for lunch. We've been driving since 6, we ate at 5, it's 1 in the afternoon."

I was pleading because of the place. It was a little diner. The real kind of diner. The one that's in the 'late night diner' painting with Elvis and Marilyn and James Dean hanging around having coffee. I'd never been in one before - because we always drove by too fast to think of stopping. But it was lunch, the diner was right by the gas station, Joe had little he could say.

It was a bit tricky getting the wheelchair up but I had to, I've used it a bit more on this trip as my legs aren't working quite right. Once inside I wasn't disappointed. There was one other couple there finishing lunch, a waitress out of central casting, and tables by the window. We asked for the windows and she muttered all the way over to the table, "The customer is always right, they don't care that we have our own ways of seating people, they don't care that the waitress is going to have to walk all the way over there." Then like we hadn't heard her little diatribe she pointed at a table and asked like she meant it, "Would this one be OK?" We nodded and were sat down with the menu.

The menu didn't disappoint either. Though it was full of healthy things like, kid you not, deep fried cheesecake for dessert, it had lots that we, as vegetarians could eat. I'd had fried green tomatos the night before and couldn't wait to have them again. So I order those, with green tea, the waitress, who had a different spirit than the 'hostess' laughed and said, "Well it is getting close to St. Paddy's day." I didn't get the joke but I laughed. Joe pointed out the 'green theme' of my meal when she left.

We began to talk. I could tell the waitress was listening because she looked like she wasn't. That's how I do it too. I was whining a bit about all the driving and all the travel. We talked about the conference in Orange Beach and the upcoming work in Norfolk. Then we talked a bit about a couple of other things and I was waxing poetic about things Vita, talking about where we are with the abuse prevention changes and the upcoming conference.

Lunch arrived. She delivered them to the table and then leaned back and started to chat as we tucked into our meal. She said that she couldn't help overhearing our chat and were we on the road a lot. I nodded - looking for sympathy. She said to me, in that charming way Southerner's have, and said, "It looks to me like you can't tell shit from sugar."

She explained to me that she worked two jobs to make ends meet for her family. She worked here at the dinner during the day and she worked in a 'care home' she called it for the elderly in the afternoon. "It's hard," she said, "but I wouldn't give up that job for the world. Those old people need me, they have nothing left, and if they don't have me they don't have nothing. I know everyone things those places aren't nice. Well, they are as nice as the people who work there, and I go there to be nice."

"It's a living," she said, "but it's also a good way to live."

"You get to travel around and talk to people about working with special people. That's sugar, baby. Working in a diner to pay the bills, that's shit."

I felt chastized.

"Tell me," I said, "I always like to throw in things that I've learned from people I meet into my lectures. What do you want me to say about being in service to others?"

That flustered her and she lost her self confidence. "I don't know, sir, I surely don't know." And she left us.

I felt like she might have thought I was being smart or trying to show her up, but I wasn't.

I thanked her on the way out for the chat. I promised to be careful with the shit / sugar thing. She smiled and said it was nice talking.

A few miles later I was putting the bill away in our receipts folder and noticed some writing.

"No matter what kind of day you've had, take gentle hands to work."

She signed it, Sheri-Lee.

Wednesday, March 07, 2007

Grill Chef

He had to stoop down to see me, but he did. A tall man, he had to look by the 'sneeze guard' to see me sitting in my chair.

I was placing an order for an omlette at one of those breakfast buffet things that hotels have. The guy cooking the omlette was quite chatty as he took my order and began working on a personallized breakfast for me. Turns out he's only there for one more morning and then is moving down to the grill for the summer. The hotel is right on the beach in Orange Beach and I said that working the outside grill would be awesome. He agreed.

He said that for 7 years he'd worked as a night chef and didn't get much of a chance to meet the guests and he enjoys working in areas where he can meet the people who eat his food. "There's not much point in being in the service industry if you don't enjoy meeting the people," he said. By the time I had my breakfast a small line had formed behind me and I could hear him chatting with others as he took their orders.

A couple tables away I heard two women talking, they were both wearing the name tags given out by the conference. They had obviously got the same story from the chef but one of them was really upset. From what I gathered she was in senior management in an organization serving people with disabilities but that she had also stopped meeting the people she served.

"That damned chef," she said with a teary voice to her friend, "shows me up. I've forgotten the basics."

They chatted and I could hear resolve in her voice, I think she was going to go back and be a very different person.

Later I met her again after she'd attended one of my sessions at the conference. She told me that she'd come to the conference to hear me speak. I was flattered but said, "But you had the great good fortune of hearing what the chef had to say."

She looked embassased for a moment but I said, "Listen, we learn from whom ever is sent ... isn't there as saying something like, 'when the student is ready, the teacher appears'.

So the teacher's a chef.

As long as the lesson is learned.

Sometimes you pay to learn, other times you just need to pay attention.

Tuesday, March 06, 2007

Perdido Rules

I want pitch a fit.

Like a rock star, I want to smash the furnature in my room, punch holes in the wall and write graffitti on the bathroom mirror.

I want to.

But I won't.

Instead I just slammed down the receiver of the phone, not even swearing at the front desk clerk, and sulked. This is what you do when you are over fifty, semi-respectable and too tired to get much of a head up. I had called downstairs to be told that the hotel has a business center with computer internet access but it's closed on weekends and only open from 8 to 6, Monday to Friday. It's Sunday, I want to check email, write my blog, and check out local movies. But, no, the center is closed.

Cause that's the rule.

No one I spoke to understood the 'why' of the rule, they only understood the 'that' of the rule. And I am powerless in front of their need to assert the right of rule. And it angers me.

Deeply angers me.

But this is what it is to be at the whim of others, anonymous rule setters who will never meet me, never understand my needs and never desire my confidences.

In two weeks I go back to my office at Vita. I'm going to take the page out of the information binder that outlines the rules of this hotel and have it copied. It will be my souvenier of anger and my keepsake of powerlessness.

I want to be reminded of what that feels like.

Because I don't like it done to me.

So, pray, let me not do it to others.

Monday, March 05, 2007


Today we drove through Mobile, Alabama, on our way to Orange Beach where I will be lecturing for the next two days. As we hit the outskirts Joe asked me, "Do you remember the self advocate session you did in Mobile a few years back?" I told him that I did. Without another word we both laughed.

I had been asked to do a session for the self advocates in Mobile by a woman I've known for years. We'd met when she was working in the north and then she and her family moved south. She knew I did self advocate sessions because I'd done one for her in Illinois. There it had been a typical group of self advocates who came together to talk about rights, there was laughter and grumbling and even the occasional complaint. A good group, like almost every other group I've facilitated except the concerns were regional even if the themes were universal.

Then came the group in Alabama.

I've never done a self advocate group like it.

They were so, what's the word, genteel.

Well mannered young ladies and gentlemen.

Captain Butler and Katie Scarlett O'Hara with a disability.

Here a behaviour problem would be forgetting to dump a bucket of sugar into a cup of iced tea.

It constantly surprises me, in a way that confirms the fact that I still have prejudices to conquer and stereotypes to eliminate, that people with disabilities are as much a product of their culture as they are a product of genes. These people with disabilities were a reflection of their upbringing, they behaved like other non-disabled southerners. I know that, but it still suprises me.

I remember being really surprised to see a young woman with Down Syndrome speaking French in Quebec. At first I thought it was 'cute' that she could do that. Then I realized that she spoke French because she was French Canadian. Duh. And don't make me tell you what I thought when I first spoke to a self advocate with a British accent!

So then ...

Disability doesn't mean foreigner.


Resident alien.

I need to be reminded of that regularly.



Sunday, March 04, 2007

Dual Citizenship

Sometimes I think I should just give up.

Stop fighting the good fight.

Just admit that I've been diagnosed "terminally male" and be done with it.

Two days ago I wore my red shirt to work. Donna, who works at the desk, is a large woman who is one of the best dressers I've ever seen. We often talk clothing and I know she has always wanted to see me in more colour. So, I wore my red shirt to work.

I came in, strode up to her and said, "I wore red today, just for you."

She smiled, finished what she was doing, then looked up at me. "That's burgundy," she said witheringly.

"Um, no, it's red," I said.

"Well, OK, if that's what you want to think," she said with irritated patience at the dimwittedness of men who can't tell red from burgundy. What the hell is taupe anyways?

Then a day later at the other office two women raced to ask me a question. I had written a piece for the staff newsletter about the retreat and had mentioned that there was someone there who was surprisingly competitive. Each thought I had written about her. They had a been arguing about who had been written about, first, then who was most competitive, second. Personally, I think they should call it a draw.

Then I was asked flat out by one of them, I knew immedately that I was in trouble. I was going to be in trouble one way or another. There was no right answer that would save me from grief. I thought fleetingly, "Why would men have affairs and risk two women being angry at once?" One was scary enough.

But I had to answer so I told her that I had had her in mind when I wrote the piece. She smiled victoriously. Then the other asked and I told her that I had been thinking about her competetive friend. She teased me that I should have just lied and said it was really her.

I said, "I thought women wanted men to be honest."

"Not about things like this," she said with a look that said 'institutionalize this guy'.

You know what's funny, when I first wrote this I had written both their first names down, then realized that I'd be asked, "Why did you put her name first?" So I gutted out. Backed down. I don't want to walk into that situation so I've changed the text. Sometimes, at work, I feel like I'm swimming through estrogen.

A few days ago at the Science Center's Superhero exhibit, they had a series of 'black holes' that you were to put your hand in to see if you could figure out, just by touch, what the object was. Joseph, 12 year old wonder kid, and I got there first and we did well. The final one I put my hand it and said to him, "No man will get this one wrong." Joseph shoved his hand in and announced, "It's a television remote control!"

We both laughed and Joseph said, "I wonder if any women will get that one." The woman behind me, overhearing the converstation muttered under her breath, "Finally, something a man can do." She said "man" in a tone that most people use when they talk to a dog that's soiled the carpet.

OK, so I give.

I'm a guy.

I like beer.

I like burping contests.

I like smutty jokes.

I like the remote control.

I like the fact that in my world, burgundy is just red.

If being male is becoming a 'disabling condition' then half the population will immediately apply for parking passes.


And me?

I'm in a wheelchair and I'm a man.

I guess that makes me dually diagnosed.

Saturday, March 03, 2007


We were walking along a beautiful treed path going from one building to another. I don't remember the city or state, but I do remember the small campus that was hosting the workshop I was presenting vividly. Equally I remember the woman I was walking with. She was animated and a quick talker. God save me from slow talking people. People who choose their words carefully and thoughtfully, people who say every syl - a- ble. Yike. Talk. Say what you have to say. She spoke quickly as if the words couldn't get out fast enough.

I had talked a bit in my presentation about how we mistakenly protect people with disabilities from life, from risk, from pain. She was telling me about a young man with a disability who had been disallowed from knowing about his father's death, attending the funeral, bringing flowers to the grave. The family thought that the death would 'upset' him. Um. Yeah. So his father was here one day, gone the next and no explanation given him for the disappearance, after a while he stopped asking.

She told me that she used to take her dog to the group home because all the guys there loved him. Tragically her dog was killed in a freak accident and she was terrified about bringing the subject of death into the home, frightened about how he'd react to the disappearance, would he suddenly figure it all out. But she decided that she would tell them all the truth. She arrived at the home, sat them down and told them about the accident and the dogs death. She cried as she told them, she cried a bit as she told me.

Feeling good that they'd been treated as adults and had an opportuntity to express their grief, she was then surprised at her next visit to the home. The young man, lied to by family, asked where her dog was. She sat him down and said, simply, "He died." He looked at her, eyes filling with tears and said, "He just keeps on doing that doesn't he?"

We laughed. A sad laugh. But we laughed.

The other day, I wrote of Janice in a group home singing her song. My best friend, Bob Clayton, worked in the home too. We had so much fun working shifts together and we fell in like with each other quickly. I would always check the shift lists to see if Bob's initials RRC were on the board on the same days that DH were there. I loved those shifts. So did the folks in the house. They liked all the laughter. We stayed friends even though he moved to Vancouver to take up a life there. I visited him regularly and talked frequently on the phone. I saw him slowly dying as AIDS began to claim him.

Even so I was unprepared for his death. Death, even expected, can never be prepared for. It hit me hard. All these years later, I still sometimes remember something that Bob said, something that we all did together, his bad choice in boyfriends, his great taste in decorating - all of it. Then it hits me, almost fresh, Bob's dead. "He just keeps doing that doesn't he", I now say to myself.

That young guy with a disability got it. Death isn't a singular event. It's repeated regularly when someone was loved.

What makes me truly smile is that Bob always wanted to be the subject of one of my stories. And I tell two Bob stories in my lectures and now he's visited my blog. This isn't morbid at all, because for the brief time that I write this, he lives again in my memory and in my heart. I'll have to say good bye again in a few minutes from now because he keeps dying, going away.

And until today I felt sad that that young man didn't understand loss.

Now I realize that he did, better than I.

Friday, March 02, 2007


"Do you have to? All the time? Do you have to?"

We were in the midst of a full fledged fight. I'd like to call it an arguement but in fact it was a fight. I had just taken on a parking lot attendant who had refused to let us check and see if there was any disabled parking left - instead they were sending us to a lot blocks away. I won, we got in and found parking.

I could tell by the edge in Joe's voice that he was upset.

I thought he'd be glad, we were parking so much closer. It would be easier on him to because I need his help and he'd have had to push me a long way.

"What's wrong?" I asked.

Never ask "what's wrong" unless you are ready to hear it. Ready for a fight.

"Why can't you just leave things alone sometimes. Why do you always have to be so difficult? Over every little thing."

Joe is a nice guy. Doesn't like to cause problems. He likes to laugh. He is easy going. He doesn't take life too seriously. In other words he is so 'not me'.

So I got mad right back. That's always the best way to respond to criticism, I find.

"Because I have to. I've been like this my whole life. I don't like it when people don't listen to me. I don't like it when people don't bend."

"But you don't."

OK now I was mad. Really mad. We snitted at each other till we arrived at the meet point and waiting for our friends to arrive. We don't ever fight in front of others so we smiled when they got there and then minutes later we were both having fun, with them, with each other and we each knew the fight was over.

But it's three o'clock in the morning, I'm at the computer only because I need to shut it down. A storm is whirling about outside and the power is flickering on and off. I decided to try to write this blog before shutting the computer down.

Don't think about things at three in the morning. It's harder to self-delude at three in the morning. At three in the morning you might think that maybe sometimes you are 'in the wrong'.

So I think the best thing is just to quit writing. Tell myself that I'd better publish this now before the next power outage. Don't want to go too far into this 'do I use my disability sometimes to play the role of righteous victim' thinking. Don't want to tred that path.

Cause it's three o'clock in the morning and by seven, I'll be myself again.

Thursday, March 01, 2007

And Number ...


"Don't Stand, Don't Stand, Don't Stand So Close to Me!" She'd sing the words over and over again. Then Janice would let out a huge laugh and start again. Staff told me as I watched her that she's 'stim' to one song for a week or so then move on to another more current song. She'd sing only snatches of the song over and over again. Laughing. Loving the song. Loving the singing. Loving the moment. Janice would become the song, become the singer, the music didn't change her, it transformed her, she became something more, much more than anyone thought she was.

Tracy would lay for hours curled into a little ball. Little interest in the world outside her head, she would be dressed without resistance and sat in a chair limply. She showed little interest as the day's routines flew by her. But when she got on the bed she'd curl up tight, a hand that did nothing else with real purpose would grab the blanket and pull it up over her shoulders and she'd sink into the bed. You could see her disappear from the ward, from the institution, into the great 'somewhere, anywhere, else'. Catch her in the right light, peer under the blanket, and where ever she was must have been nice because she was smiling.

Discovered by a happy accident, Darlene became an addict. Staff brought in leftovers from home. You could smell the curry as it heated up in the microwave. Darlene's eyes, usually unfocused from all the behaviour contol drugs, found the source. She stood by the microwave just breathing in. Her first taste of curry brought tremors to her body. She shook with pleasure. Curry was her drug of choice. It was easy to make her happy. A little taste and she was transported. Out of her body, out of care and into a sensuous world of pure pleasure. It was a treat to watch.

Being there at these transformations, disappearances and resurrections remind me that it's always possible to be transported, to be changed, to be removed - that simple pleasures are meant for complex purposes. That we, by touch, by taste, by sound, can be spoken to in a universal way. That we, through the body, can always commune with something greater. That we, through our connection and commonality, are much more than human and much less than divine.

I am therefore constantly reminded ...

that we are made to remember vanilla and to forget vanity.

It is this lesson, constantly relearned, that I value most.

If that makes any sense at all.