Monday, April 30, 2007


Burping, farting, scratching, drinking beer, watching the game on television.

Sex, unreasonable girlfriends, sex, getting nagged, sex, interfering parents, sex.

We talked about it all.

At the Missouri People First conference this weekend I was asked to lead a 'men's group' discussion. I was told that it was to be a free for all, free from staff, free to talk session for men with intellectual disabilities. I was to facilitate, not lead, the discussion. I was, simply put, panic struck. I am not easy in these kinds of situtations. I may look casual when I present or do a session but I'm not. Everything is scripted. I know what happens when and how to get from start to finish.

So, to keep myself calm, I put together a "Chant For Men" and then a "Man Show" question and answer game. Thus, I felt prepared. But I wasn't. They streamed in. There must have been near a hundred of them. My mouth was dry. My insecurities mounted. I had an hour and a quarter, 75 minutes to fill. That's a long time. An eternity.

So we did the Man Chant.

I called out things that men like and the group called back, in unison, "Who-Rah". After the first line they shouted down the ceiling. This was a group of men who were ready to talk. To have fun. So I opened it up. Hands shot up. Everyone had something to say.

They talked about being seen as 'boys' not 'men' by society, by agencies, by parents.

They talked about parents interfering in their relationships - with threats and tantrums.

They talked about girlfriends who were too clingy or not clingy enough.

Sometimes we laughed so hard as a group that tears were flowing down. Sometimes, "Who-Rah" was shouted spontaneously by the group as a way of affirming a speaker. Sometimes we talked about the pain of being seen as asexual because of disability.

We never played the Man Game I made up.

75 minutes later, we were done.

We had just talked. Guy to guy. Man to man.

We had laughed. At the absurdity of prejudice and the silliness of society.

We had shared. Like men. Like guys. Like slightly irregular people.


Sunday, April 29, 2007


"It's called the institution shuffle," Win explained to my question about why the people I worked with on the ward walked with such an odd, listless gait. I noticed it right off when I started work at Glendale, a small institution in Victoria which offered me my first job in the field of disability. I saw a woman making her way down the hallway walking slowly barely lifting her feet. She was the first of many who I saw over the years creeping down hallways, wandering from dayroom to dayroom. It was my first hint of the weight of captivity on the souls of people with disabilities who lived in the land of the long corridor. It deeply saddened me.

That's all I could think of, sitting there on the podium waiting to do my prsentation. It is Saint Louis and the Missouri People First conference was about to start. The room was packed full of 300 people most of whom had a disability. There were a few facilitators sprinkled through the room, but the room was not theirs. It belonged to the 'others' ... those who had tred institution hallways, those who have always walked at the edge of societies acceptance. I had asked permission to get up onto the podium before the ceremonies begun so that when it came time to start I didn't have to struggle with my wheelchair to get up the long and somewhat steep ramp. Thus I had the perfect view.

They began with a flag cerimony, different People First groups from around the state prepared a banner or a flag to represent themselves, each region did the same. The vice president of People First sat beside me and announced each group as they came in ... "People First Saint Josephs" he called out in a loud and commanding voice. The room erupted in cheering and applause, "People First Columbia" more cheering more applause. They entered the room through a door that was directly opposit the podium and came down the center of the hallway.

Each banner had artwork and symbols that each group had made to symbolize who they were as individuals, who they were as groups. The cerimony was simple but oddly powerful and incredibly moving. I felt myself tear up as I watched people with disabilities proudly, so very proudly, carry their banners into the room. Into a room full of welcome and acceptance and sameness. There was such dignity of each flag bearers face. They understood the honour afforded them. They wanted to carry out their task with dignity.

And they did.

It wasn't until near the end that I noticed. The institution shuffle was long gone. They walked in as powerful men and women. They walked in as representatives of their group. They walked in as citizens. They walked in proud. Suddenly I couldn't hear the cheering any more. All I could hear was the soft 'shufffft shufffft shufffft' of her shoes as she made her way down Glendale's hallway.

Impossible ... it was impossible then to imagine that she was slowly walking towards a different destiny. That she would walk past institutional living and into the community. That she would walk past the edges of society towards the center of belonging. That she would walk past shame and into pride.

It's been a long journey.

And it's not over.

But my, oh my, how far we've come.

Saturday, April 28, 2007



The most important meal of the day. Today began when we pulled into the hotel restaurant ready to tuck into a breakfast womp up. We're used to hotel restaurants. They are usually full of business men prepping to be important. To look important. To say important things. Captains of Industry. Men of action. Women of determination. Yada yada.

Joe and I are both used to being the stick in the stream that forms eddies in the water. The one's that people glance at. The one's that make people evaluate how we can, in our Birks and our jeans, afford to stay in the same hotel as their vaulted selves. At first we were intimidated but now it's fun.

But today we're staying in a hotel where a People First conference is to be held this weekend. Several people with disabilities are here to meet and to prepare for the conference. Breakfast was like a diversity version of the Star Wars bar. People who moved differently - like me were there. People who walked with a decided list - were there. People who communicated differently - were there. People who ate differently, smiled differently and related differently - were there. And damn us all to hell we were sitting in all different segments of the restaurant.

As the suits, and fine suits they were too, came into the restaurant you could see by their faces that they were distracted to the point of loss of coordination by all the difference around them. They didn't know what to do with their eyes. Some even missed their mouths as their eyes would be drawn by a new entry away and their fork would miss the target.

We were in the majority.

Tee hee. Tee hee.

I wonder what stories they'll tell.

But the moral of the story will always be the same - even if they don't tell it.

We're here.

Despite your best efforst, we're still here.

Friday, April 27, 2007


"Both my parents were blind," she said and I was rivitted to attention.

I asked a lot of questions that were probably quite stupid. I wanted to know what it was to be a 'typical' child of 'exceptional' parents. She was patient with me answering all my questions. She suprised me by telling me that she had as many if not more problems with the cruelty of adults as she did with the cruelty of other children.

She wasn't allowed to take swimming lessons because her parents were blind. There's a connection I'll never understand.

She spoke both of the isolation felt by the family but also about the kindness of many in the community. She spoke with pride of her father who worked on the ADA and of his ability to manage his own in a crowd. "I think because because he couldn't see legislators they never managed to intimidate him."

"He had a saying," she told me, "It's the soul that sees."

And because the soul sees, he never felt his disability. She said that neither parent talked much about their blindness they just got on with it. "They were just mom and dad, they weren't 'the blind people who live in my house.'"

I asked her what she learned from her parents.

"I learned to see people - not disabilities - people."

I guess her pop was right ... 'its the soul that sees."

Thursday, April 26, 2007


I don't know how the subject came up but it did. She was telling me about her daughter who had cerebral palsy and in passing mentioned that her daughter had met her husband, a blind man, on the internet. They'd dated for awhile and then met and married. He moved out to Kansas City and now they live and work in the city.

That's all she said.

Not much of a story for a blog.

But my, oh my.

Two disabled people managing to meet across the miles. Fall in love. Marry.

A tale told by a smiling mom, proud of her daughter,thrilled for her happiness.

Is it my imagination or are parents changing and evolving? Are parents, not all, not every individual, but as a group coming to a greater understanding of what love, relationships, dare I say, sex means in the lives of their children.

Only recently I talked with a mother who was clear, no way would her child ever have sex. No way would she ever let that happen. She had come to a workshop on sexuality and had come to give me the message that no way in hell, no matter what I said, no matter what anyone said, would her child ever, ever, ever have sex.

I have come to see that as the norm. But today, talking with this woman in Kansas City I realized that the day the woman told me of the restrictions on her daughter there were 20 other parents in the room, taking notes, asking questions - trying to figure out how to do best by their kids.

Somethings happening.

Something big.

Hope has expanded hearts.

There was a day I couldn't have imagined the conversation I had today.

"My daughter with cerebral palsy met her husband, who's blind, on the internet."

Yep, somethins happening.

And it's good.

Wednesday, April 25, 2007


She was only there for a minute.

The briefest minute.

I was getting ready to do a presentation for staff at an agency in Liberty and was fumbling around with my papers and my ideas. A few staff had straggled in and were taking seats. They were a friendly bunch and we chatted amiably as everyone was settling.

Then in walked what I thought to be two people in twin floral shirts. But no, the shirts were different as were they. One was staff the other a woman with Down Syndrome. The small woman approached another staff and I couldn't see what transpired but I think she gave something to the staff. That done she turned and purposely strode out of the room.

It must have been a nice exchange because the staff had a smile linger on her face for some while after.

But here appearance was magic to me.

The travel is wearing us down and we have a few intense weeks yet before we're home for a full two months. All weekend I had trouble enjoying the time away because it was time away. I wanted just to be home.

I felt like whining.

So I was glad to start the day today because it meant the beginning that would lead to the end - home. And that was it, my motivation. Pretty selfish motivation, but there you have it.

Then she came in.

The she left.

Sometimes when lecturing on the road I never see people with disabilities who are served by those in my audience. They are an abstraction to me. An idea. A ghost.

But she was real. She was there. She existed for me when I needed her.

Now it mattered that we were gathered there today ... there was a real live person in my mind as I presented. And it mattered. And it showed. Today wasn't about me getting home. Today was about her being home. It was about her not living in Liberty but with liberty.

Inspiration can be a woman with Down Syndrome in a floral shirt.

And today it was.

Tuesday, April 24, 2007


People looked at me and smiled. I was sitting in a Borders Book Store Cafe having a tea and reading a new book that I'd bought that day. The writer is brilliantly funny and I kept breaking into chuckles. For those who, like me, are aficianados of the movie "A Christmas Carol" with Alistair Sim you will remember a scene where Tiny Tim is looking in a toy shop window. There is an automated toy that laughs with a bouncy kind of rhythm. I have always felt that I looked like that toy when I giggle. So people smiled, just like Tiny Tim, at me bouncing and giggling.

I set the book down three chapters in and had a sip of my tea.

Then it hit me.

A deep sadness.

I get this sometimes when I read a book like this. Most often when I read brilliant literature I am just in awe or impressed. But every now and then I read a book that I would have liked to have had the talent to write. Where there writer has a style, unlike mine only in the way that words spin to brilliance. I felt deeply disabled. Something that I would love to do is out of my grasp.

I have just enough talent to know that I don't have just enough talent.

And it saddened me.

I know that we are not supposed to compare ourselves to others as it leads to either vanity or despair. But still it's hard not to. Really hard not to.

"I wish I could talk like you," he said to me. He had come to a workshop for those with disabilities. He came and chatted to me intoducing himself simply as Paul. I asked him if he liked the workshop and he said "yes" but then he added that he wished that he could get up and talk like I did. I brushed away his sadness - diminished my ability to him so that he had nothing to envy. But envy he did anyways.

I understood today, what it felt like for him. And I wish I had that opportunity over again. I would have taken that longing, that sadness more seriously. I wouldn't have brushed it away. I would have seen the deep compliment hidden in his envy and should have talked with him more seriously about his dream. I had mistakenly thought that he was talking about me when indeed he was sharing deeply about himself.

How often this happens to me these days as I get older. Something will happen and suddenly I will have an understanding of something from my past - long past, recent past. A momentary light is shone for me to see glaring error, brilliant mistakes and sometimes surprising competency.

Just before writing this email, I looked the author up and sent an email saying, "I wish I could write like you."

That's all.

It's the deepest compliment that I can give.

It's the deepest compliment that I ever got.

Pity was - it was for something else.

Monday, April 23, 2007


I heard it three times today.

During the movie "Disturbia" two kids hurl the hateful epithet 'Retard' at the main character. It was unnecessary and they could have easily used other words - if the writers weren't lazy and casual about hurting others. I had to shake of my annoyance in order to enjoy the movie. Luckily the movie was quite intense and I was swept into the story. Until it was over, but then it was impossible for me to think of the movie without thinking about that useless moment.

Joe has hurt his ribs so I've been hauling the wheelchair in and out of the car so he can heal. It's a good way for me to remember the physical cost of supporting someone with needs like mine. So when we decided to go shopping for a few groceries on our way back to the hotel, I almost gave going in a pass because I didn't feel like lifting the chair in and out. But I knew Joe would feel guilty (when he shouldn't) about leaving me in the car so I hauled butt and chair out.

As we went through the store there was a dad and two girls. I'm terrible at guessing ages but I'd put them between five and ten. Cute kids. Dad sounded a little silly talking to them. Uncomfortable, almost. It was like he didn't have the care of them solo often because his chatter was stilted. I think that's why I noticed them.

He actually told them to "chill".

Then he told one of the girls to "stop being so retarded".

I bristled.

The girls looked embarrassed. Both of them.

Waiting in the checkout line I saw them again. One of the girls was asking to go to the makeup section. MAKEUP. She was less than 10!!!

Dad said it again, "That's just so retarded."

She spun on her Dad and said, "Stop saying that word, Dad. It's mean."

He looked stunned.

Then angry, at her.

Then angry, at himself.

Others beside me were watching. He went every shade of red that he could.

"You're right, I'm sorry."

"Just talk normal, Dad." The youngest one offered.

"I will." He wanted to fall into a pit.

Nice thought though ... that 'talking normal' was also 'talking respectful'.

Nice thought.

Sunday, April 22, 2007


I turned the cell phone back on and immediately it rang indicating that there was a voice mail message.

I called right away, it was nearing the end of the day Friday and I wanted to ensure that I dealt with all that had to be dealt with. The message was brief. My new wheelchair is in and I can pick it up when I get back next week.

It's impossible to tell you what this means to me. My present wheelchair has travelled all over North America, the UK and Ireland. Everytime it comes up from the belly of the plane something else has gone wrong with it. The armrests have been knocked off - twice, wheels bent, rubber ripped from rims. It's been through the mill and every day gets harder and harder to push.

Not only that, my present wheelchair was got in a rush. I needed it as I was just out of the hospital and about to go on a long trip to England. I couldn't make it without a chair. I took what they had, it wasn't really crafted for me. It was made for a more, um, generic butt. But this chair, my new chair, was made with me in mind. I'm told it's a wee bit heavier but it's also sturdier and has 'a good roll'.

I'm as excited as if I was getting a new car.

What I remember as I think about moving on to a new chair was that first day in a wheelchair. I had been in intensive care for 5 or 6 days. I hadn't left the room and I had nursing care round the clock. Then the doctor came in and asked if I'd like to get out of the room for a few minutes and maybe go down for tea.

My mind was operating on old contingencies, "I don't think I can walk that far," I said, my heart sinking. "No, no, I'll send in a wheelchair for you."

The chair arrived and it took some time getting me off the bed and onto the chair, I was weak from the surgery and from a year of infections. Not only that I had tubes in my arm and up my ... well, you can imagine ... Even so, I got in the chair and Joe and I left the room and I had the best cup of tea I've ever had in my life.

I was liberated.


And my new chair is waiting for me.


I can't wait to see where we go together.

Saturday, April 21, 2007


Which bigotry first?

We arrived in Kanasas City where we have the weekend off before beginning work next week. As we always stay in the Residence Inn, they have kitchens, we were off buying groceries for supper at a huge store just a few blocks from here. When we went in the first thing I spotted was a Starbucks. Because the US doesn't have a Tim Horton's every few miles, it had been a long time since I'd had a tea. I looked at Joe pleadingly and without a word we headed for Starbucks.

I ordered a green tea and Joe had a regular and as we waited for them to be made I listened, as you already know I do, to the women talk behind the counter. They were talking about the tragedy at Virginia Tech. I popped into the conversation to tell them that it was weird seeing images of the school because I worked there for a week every year for about 5 years. One of Virginia's big conferences was held on campus for years before it moved to Roanoke. Seeing the campus, the building I stay on campus in was weird.

They were really chatty. After hours and hours in a car with just each other, it was great to have other voices to listen to.

"You know what scares me," the youngest of two young woman said.

"What," we all asked, some with voices some with eyes.

"There's this kid, he's a mongoloid or something and he lives down the street from me. Now I'm worried all the time about him. When is he going to snap?"

The other woman, sympathetic, said, "I don't know why they just don't lock them all away."

You ever have the feeling that you got a mountain to move and only a sugar spoon to move it with? I think to myself - stay calm, be rational, be succinct.

"May I help you with that," I asked "you see I work with people with intellectual disabilities."

"This kid isn't intellectual," she said with all seriousness, "he's retarded."

"OK, well, intellectual disability is a nicer way to say 'mentally retarded' and he's got Down Syndrome. Mongoloid is a word that isn't used anymore. But," I said quickly as I could see them bogging down in terms," that's not the issue. People like your neighbour are amongst the least likely to carry out a tragedy that you will see on television."

That got their interest.

They asked a lot, I mean a lot, of questions. They were really quite curious about disability and the difference between (in their terms) mental illness and mental retardation and were suprised that there was that much of a difference.

As we wound done the converstation, I noticed thier ages.

"Did you guys have kids with disabilities in your school?" I asked.

"Yeah, we had a special class in mine," said one.

"Me too," said the other.

And that didn't teach you that kids with disabilities were ok?

"Well, nobody hung with them and we weren't told much about them. I think most of us were just a little scared of them."

"Me too," said the other.

"Oh," said I.

"A talk like this would have helped."

I'm glad I helped. Glad I went for tea. But I felt I'd moved a grain of sand from a mountain that grows every time difference is equated with violence.

Friday, April 20, 2007

Madonna and Child

Sometimes it's hard not to feel awe. Like I'm in the presence of something holy. I felt that today. In Michigan for the Focus conference I did the keynote and then a session on relationships and sexuality. I left a half hour for questions in the relationship section and a woman put up her hand. She was worried about her child's shyness getting in the way of forming relationships. She felt that her child wanted to form relationships but had been rebuffed often due to her difficulty with communicating.

You could hear her concern. It was in every word.

You could see her desire to help her child. It was in every gesture.

I asked a couple questions and more of her story poured out. Her child had FAS and had been placed in foster care after her birthmother had tried to drown her in a bathtub. She stayed in foster care for 6 years and then was adopted by this woman. The story was not told to shock or to impress, it was told as background information. She wanted her child to continue to grow and develop. She was excelling academically - against all odds and all predictions, but socially she was falling behind.

I gave a couple of ideas, lame ones I knew, but the question was too big, too hard and there are too few resources.

We spoke briefly afterwards, mother and I. Her manner was one of such calm. Peace radiated out from her. As she spoke of her child you knew that, though the child came to her at six - she was that girls mom. Love, absolute love and concern filled every word that she spoke of her child.

I felt in the presence of something quite sacred.

A mother's love for a child.

That little girl had such a rough start. From womb to six her life had been one of abuse and abandonment. How had this woman standing before me come into her life? What kind of miracle had these paths cross? Who makes this kind of person? What part of God's factory puts out luxury model souls - souls that seat more than one.

A little bit of her peace has stayed with me all day.

From a bathtub where someone tried to drown a little girl in water she rose ... baptised into a new life with a new mom.

I am deeply thankful today for being reminded that in even the darkest world, it is possible for light to shine.

Thursday, April 19, 2007

Too Much

I held the picture in my hand knowing that it was significant that he showed it to me. Could see by the slight tremble in my hands that I was close to losing it. I fought for control. "Please, please, don't let me laugh. Don't laugh." His face looked at me expectantly, his eyes bright, his was a manner of expecting a compliment.

"Its ... um ... its ... beautiful." I managed. He broke into a grin. Then the question popped into mind, "Can someone grin when they've only two teeth?" I was on the slippery slope and sliding. I had to remain calm and keep it respectful. Anyone who tells you that respect doesn't take work some times is lying.

This will take some explaining.

He had come to my conference because he had heard that I spoke on sexuality issues and that I was supportive of the same sexual diversity for people with disabilities as for the typical community. So he had come to share a moment with me. This was not therapy, I realized, in the typical sense - it was therapy in the day to day sense. He wanted a moment of acceptance from a stranger and he'd picked someone he figured was a safe stranger.

He was dressed in day to day male garb but the picture was a "Glamour Shot" of him in a dress and huge wig. Bright red lipstick highlighted a smiling mouth but had gotten on one of his two teeth. He looked like a Vampire in a bad dress. Even so, I managed something kindly.

So he's disabled and dentally challenged. I'm totally ok with that. I mean big deal.

So he likes to wear dresses and imagine himself a beauty queen. Who's hurt by this? Really?

Then he tells me that for sex, he saves up his money and hires rent boys a few times a year.

Well, I'm not big on prostitution, but he's just chatting. Letting me know that he's also gay - no crime. The sex, though purchased, is consentual. I nod. I've done my part, he can go now.

I glance at Joe with a 'Save me please' look on my face. But Joe's face is stuck. He's got the picture I handed to him in his hands and there are tears forming in his eyes. Anyone who knows Joe knows that Joe finds everything funny. He has the easiest laugh of anyone I've ever met. And it's real. He does find everything funny. He's fighting for control himself. I can expect no help from him as he's desperately trying to save himself.

"Can I tell you a secret?" He asks me leaning in.

"Oh, my God, there's more," I think.

"Are you sure you want to, I mean I am a stranger," I say.

"That's ok," he says.

"No, it's not," I think.

"What I really like is when they spank me," he says.

You know what I learned that day?

It's possible to have too much diversity in just one person.

I know, I know, I know that nothing he told me is really all that bad or all that deviant. It's kinky. And besides, if anyone needed spanking ...

But please.

It's almost lunch.

I bid him fare well telling him that I had to get back to selling books at the book table.

He thanked me for listening.

I didn't thank him for sharing.

But he didn't notice.

Wednesday, April 18, 2007

Shut Up!!

I hate bank line ups.

Even when there's no one in them.

But when there's ten people ahead of me ... it's almost unbearable.

It's time's like these I'm grateful for my chair. I just sit back and roll myself slowly forward. This is good especially today. I've not been feeling well for a couple of days and am only in the bank under duress. I feel victorious when the line in front of me is shorter than the line behind me. I like glancing back at the end of the line and thinking, "Poor sods."

It had to happen and it did. A child begins to tantrum. First a couple of quiet grumbles then a full on out and out screaming tantrum.

"Shut that kid ..." I begin to think as I glance towards the mother trying desperately to quiet the child ... umm ... the child ... ahem ... the child with Down Syndrome, "... up."

I didn't care.

It didn't matter that the kid had a disability ... 'shut up'.

I felt like an equal opportunity tantrum-hating line-stander-inner.

I noticed the others in the line up notice.

I saw them arrange their faces to look patient and understanding.

I set to wondering what they'd look like if it was a typical kid. I'll bed they'd be right annoyed. That they'd have the ... 'why don't you take parenting classes' look on their face. But here they practially beamed at mother and child.

You know, it's ok to be annoyed with a kid with a disability.

"That's a face that wouldn't raise funds," I thought as I the kids face contorted into bunches of anger and frustration.

Here's a shocker. I don't like all people with disabilities. Some of them that I've met I actively don't like. Can't stand the sight of. And some people with disabilities I like well enough but they can drive me crazy some times.

And that's OK. That's how it works.

Equal doesn't mean special. Equal means equal.

That kid and that mom had the right to be in the line up.

I had the right to be annoyed at the tantrum.

It's the tantrum that's relevant. Not the type of kid having it.

Mom did a decent job of settling the child down. Without giving in, I might add. The good behaviour wasn't bought ... I like seeing good parenting - primarily because it leads to quiet children in bank line ups.

What impressed me most about mom is that while the line-up was ready to tolerate "special" behaviour from a "special" child - she wasn't.

And neither was I.

Tuesday, April 17, 2007


Odd isn't it?

How it's OK.

I mean when it's you.

A couple of days ago I was going out for supper and it was a bitch getting to the table. They were packed in tightly and when I tried to remove a chair so that I could park mine there seemed to be nowhere to put it. The waiter comes, annoyed, and takes the chair away making a big deal about it.


Everywhere, chairs.

Clogging up passageways, limiting space.

Chairs an adaption that those who walk expect to have pretty much everywhere they go. I suppose they think it's a right.

AB's want it all. Expect it all.


Big glaring overhead lights.

Casting harsh glow over the goods in the store and spilling out into the night.

Lights an adaption that the sighted expect to have pretty much every where they go. I suppose they think it's a right.

"I can't hear!"

"Speak up!"

Those damn hearing people sit at the back of the room and complain that they can't hear unless the microphone is turned up. They expect that sound will be there when they want it. I suppose they think it's their right.

The rooms too hot.

The rooms too cold.

Set the temperature for me, meet my needs.

AB's want the world adapted, completely, for maximum comfort.

And I'm being bothersome cause I want a ramp.

"Sorry, sorry," I say as I push the chairs out of the way and ignore the stares of those who have to move slightly. But I've just got to get out of there. The waiter holding the chair above his head watches me leave and can't figure out why.

When I go, I take my chair with me.

And leave the clutter to you.

Go ahead and adapt your world for you, I truly don't mind ... but could you leave a space at the table for me?

Monday, April 16, 2007


"If you don't come to see me anymore, what will you do for money?"

Mark's question, blunt as it was, came out of the blue.

"Why do you ask?" I was curious.

"Because I don't think I need you to come and see me anymore. I think it's OK now. But I don't want you to not have any money so you can keep coming if you want." Nice of him to be concerned, but he clearly didn't understand how the whole thing worked.

"I'll still have a job and I'll still get paid." I told him.

"OK," he said, looking at me intently waiting for me to respond.

My involvement with him had definately been long term. We'd had our ups and downs and he kept throwing curves that no-one was ever able to catch. I liked him. He annoyed the hell out of me sometimes, but I liked him. As I sat there thinking I had to really ask myself about where we were, as therapist / client, I wondered to myself if our weekly meeting had become more 'habit' than 'helpful'.

As I didn't answer right away, he spoke up, "Did I hurt your feelings?"

Did he? I wondered. No. I was sure of that.

"No, Mark, I'm just thinking about what you said. About how you don't need me to come by anymore and I think you might be right."

A smile spread across his face, "I'm doing good now aren't I?"

"Yes, you are," I said.

"And if you don't come anymore they'll know that it's me doing good, right?"

He was, of course, right. The responsibility for his improved behaviour, his improved relationships and his improved attitude toward life would become his own. Every day that passed would become his individual success ... not to be shared with me ... his own. He deserved that. He deserved to own his days, own his success and own his future.

I ran into Mark years and years later. He'd moved cities and agencies, he'd grown a lot but still had the twinkle in his eyes that let me know that he was probably still a handful. We ran into each other when I was walking out of a grocery store on a holiday visit to family.

"David Hingsburger," he said, never having the ability to call me just Dave, "how are you?"

Joe, who was walking with me looked warily at this guy who was approaching with speed but he could tell by the look on my face that it was OK.

"Mark, I'm fine. You?"

He told me what he was up to, man he was virtually independent. Not a staff in sight. He looked wonderful. I introduced him to Joe saying, "This is the guy that fired me ..."

Mark leapt in, "I didn't fire you."

"Yeah, Mark, you did."

"No, I didn't I just didn't have any more work for you."

I remember watching Mark walk away into the world.

He didn't look back.

I wonder now if that's what my purpose was ... to work towards the day that I stand still ... and they walk away.

I think, perhaps, that it was.

That it is.

Sunday, April 15, 2007

Stair Master

I have been climbing stairs.


Having guests for the weekend should not be difficult in a three bedroom house. When we bought this place we were looking for an accessible home. It would be a few years before I would be in a wheelchair but we determined from the get go that we'd be able to have any visitors we wanted. So a house with everything on one level and a ramp into the place was put high on the priority list.

This was fortunate for when I became disabled there were no modifications that needed made to the place.


Divine re-gifting.

Something we bought for someone else was given to me instead.


But upstairs we have one bedroom and two offices. The other bedroom is downstairs. We'd had Joe's office downstairs but, though he's not disabled, carrying boxes of books up and down stairs wasn't fun. Besides we didn't often have people stay. So the office moved upstairs and the guest room downstairs.

So when we had guests this weekend we could move the bed upstairs or we could stay downstairs. I decided, against Joe's protests, that I would do stairs this weekend and we would give our guests our room. I have been having trouble walking recently and decided that this would be a challenge for me. Joe was clearly worried about this ... probably the vision of him ending up carrying my, um, plump body up the stairs frightened the hell out of him.

Yesterday I made it down the stairs - but coming up was touch and go. I felt weak in my legs, I felt like toppling over. But I made it. I had to sit down and regain my breath from the climb but I did it. I felt like an inspirational cripple suddenly. Alert the press! Against All Odds, Dave Climbed Stairs.

I'm clearly sitting at the computer writing this so it goes without saying that I climbed the stairs again today. This time though, it was easier because I had confidence. Without fear gripping my throat I could breathe. I'm feeling quite smug. Impressed with myself. I am my own disabled hero. How convienient is that?

I know it doesn't change things in any real way, I know that I'm still going to need the wheelchair when out and I'm still gonna have the problems with my feet. And, in my heart I know that I'm never ever going to do that again.

But I climbed stairs.


When it mattered, I could.

And I did.

Saturday, April 14, 2007

5 words

A confident voice.

"Hello, my name is Nancy Bonazza ..."

With those simple words Nancy began her welcome to the audience at the Ruth Ryan Meyers conference yesterday. I was flooded with emotions. At first I thought that it was because of what I knew of Nancy and the speech that she held in her hand.

As Vita began planning the Masters series of conferences it was decided that people with disabilities that we serve would be involved, visible and present. When the call went out to Vita's self advocate group for representation at the conference and for someone to welcome and someone to thank, Nancy and Mark came forward. Each willing to do their part to make the event a success.

The day before Ruth arrived Nancy, who works at head office, called me and asked for a few minutes of my time. I wasn't busy at that moment and was curious what Nancy wanted to talk to me about. She came into my office, sat down and handed me a piece of paper. On the paper was her speach that she had carefully written out. "Do you think it's good?" she asked.

She had done a remarkable job, I made a couple of small suggestions, she thought them through and agreed and then her speech was done. Nancy told me that she was nervous about the speech but that she was looking forward to the day.

When Ruth arrived at the office, I called Nancy in to meet with her. I thought that meeting Ruth would help relax Nancy as she wouldn't feel like she was welcoming the audience to meet a stranger. Ruth, being Ruth, put Nancy at ease immediately and I was glad they'd had a chance to talk.

And now here she was, Nancy, in front of over two hundred people carefully and confidently reading her welcome. I was teary.

It was only later that I realized that my emotions weren't simple pride at another's accomplishment. It was deeper than that.

During the day OMNI television showed up and filmed a bit of the conference and interviewed Ruth, Manuela and Nancy. We switched on the television to catch the broadcast. As it was in Italian we could only understand what Ruth said but we caught the drift of the segment. When Nancy first appeared and I saw her name, Nancy Bonazza under her picture while she was being interviewed I had the same flooding of emotion that I'd had that morning.

I didn't understand it.

Until I woke up, in bed, a couple of hours ago.

I remembered being taken, as a lecturer/tourist by a woman who was hosting me to do a presentation in the United States to visit the cemetary that was attached to the huge institution outside of town. The gravestones were odd, they had a huge number and underneath the number was a born date and a died date. I looked at my host with the question in my eyes.

"The number is their casebook number. This was done so that families wouldn't be embarrassed to have a relative discovered in this graveyard. It was their final violation."


To have names.

To belong to a family.

To be part of a culture.

This is part of the great journey that people with disabilities are on. I remember working for an association for community living, back when they were called associations for the mentally retarded, and being told that we couldn't submit a story on one of the individuals served to the newsletter because their photo and name was barred by the family. They wanted no images published of their child and no mention of their child's name in any kind of publication.

Death by censorship.

But there stood Nancy.

In front of two hundred.

In front of the television camera.

With 5 words "My name is Nancy Bonazza ..." she advanced the cause of disability.

It was more than pride I felt.

It was deep, deep gratitude.

Friday, April 13, 2007



The announcement board showed several flights arrived, even more cancelled and the flight we were waiting for just said: Delayed.

Delayed in airports can mean ... delayed.

Delayed can also mean ... soon to be cancelled.

So when the lights flickered and the sign read Arrived, we were thrilled.

Scanning every face that came through we were finally rewarded with seeing Ruth and Steve. Ruth Ryan-Meyers has come to do a presentation for Vita Community Living Services and as I know her I have the joy of hosting them for the next couple of days. We all rushed into a big hug and then sorted luggages and cars and got on the way to the hotel.

We'd stocked their room with their favourite imbibies and a bundle of salty, crunchy snacks. We gathered around the couch in their room and set into talk. Of course we caught up on personal stuff, Steve and Ruth still act like newlyweds and once that was done we settled into what we talk about. Ruth's expertise is in working with people who are dually diagnosed, hard to serve - but her real skill is in seeing situations and possibilities that slip by those with ordinary eyes. From the moment we met Ruth and I swap stories that's what we do. And that's what we did that night.

A kinship is built up in shared passions. I understood then why parents of kids with Down Syndrome or Williams Syndrome go to conferences together - it's the opportunity to revel in kinship. To be able to speak 'code' to be with someone who has been there, done that and discovered something new. It's like membership in a club that you thought you'd never want to join but can't exist without now.

That's what it is for Ruth and I.

It's why we're friends.

I understand her words.

She understands mine.

I like that.

Thursday, April 12, 2007

Imagine That

We had to kill time before picking friends up at the airport. "A movie!?!?" I asked, brightly, I love movies and we found one that we wanted to see that started in a couple of hours. The theatre is located in a mall and we decided to catch a late lunch at a cafe in the courtyard of the mall.

When we got there it had been overtaken. It was like the 'granny bus' had spilled over and there were at least thirty older women there, all with walkers, all sipping coffee and all talking. The din was overwhelming as the smell of lavender perfume.

There was one table left, kind of in the middle so we had to disturb several women to get to the table. As Joe went to get lunch I sat alone in a sea of elderly women. They say, "No man is an island" ... well, I was. I felt very male. Very young. Very alone.

One of the women next to me smiled, which I always see as an invitation to chat so I did. "Where do you all come from?" Turns out they come from all over. It's part of a three time weekly mall walk and they always finish up by going for coffee and a bite to eat. I commented that it was a nice ritual and she smiled and said, "It's good to still have things to look forward to."

I nodded.

That was it I thought, but she said, "How long have you been disabled?" So I told her that it was about a year and a half now. She asked more medical questions. I truly am getting older because talking about and hearing about health issues is actually interesting to me.

Then I asked her, "What about you, how long have you been disabled."

She was affronted. Offended.

"I just use a walker to help me walk and to give me somewhere to sit when I need it." Anger was in her voice. "I am NOT disabled."

The sharpness in her tone caught the other women. One said, "What's wrong dear?" And she explained that I had 'called' her disabled. Like I had called her a name or something.

Then granny 2 said, "We may be old but we're not disabled."

Granny 3 pipes up and says, "Admit it girls, we're disabled. We use walkers and we park in the special spots and none of us can do what we used to." Eyes rolled, you could tell Granny 3 liked to set the cat amongst the pigeons.

I became irrelevant now as these women hotly debated their status as disabled people. I didn't realize that women who look life if they were cut they'd bleed cookie dough could have such harsh mouths. They swore without swearing - clever.

When it calmed a bit, I jumped in again, "So precisely what's wrong with having a disability?" Granny 3, who I suspect has a PhD in Life, said, "I don't think it's really about disability, I think it's the change in status. We are already disrespected because we're old and frail, add on that being crippled - it seems like another step away from a life of respect."

Granny 3 and I then got into a real converstation and the others went on. I occasionaly got an evil eye from Granny 1 but other than that she ignored me. But Granny three was interested in talking about disability. So I explained the idea of 'disability' community. She said, "What would that be like." I looked up and pointed to a see of elderly disabled women together. In an instant she got it. We exchanged phone numbers and she got teased by the other women for 'picking up a guy at the mall'. We both laughed.

On her way out she stood and watched them all hustle their walkers towards the door and the waiting vans.

"There could be power here, couldn't there?"

"If all those with disabilities, not inconvieniences but disabilities, organized and found a voice, there'd be more than power there could even be revolution."

She patted my face and joked, "I like my men to have a bit of fire."

And off she went.

She may have been the only one of those women who understood who she was, the group that she belonged to, and with that understanding saw disability as not a loss of status but as a change in status.

Imagine what this community could be if we moved beyond shame and embraced each other.


Wednesday, April 11, 2007

Party Time

I'm getting old.

I really feel that today.

Still fighting jet lag, coming down with a cold.

I find that while my body doesn't bend like it used to - my will bends more than it should.

I find that while my muscles have gone soft - my attitudes have hardened.

I find that while my flesh is willing - my spirit is weak.

I'm heading for a pity party. And I don't care what all the self help books say, I like them. I like them so much that I won't share them with anyone. My pity party is for me. I invite only me. It's all about me.

"And what would he like?" Joe and I were out for breakfast and the waitress, after taking Joe's order asked him what I wanted. I was on the slide to the pity pool so I just wave to Joe to go ahead and give my order. I like victimhood too much some times.

An advert on the television for a movie coming out uses the word 'Retard' in the promo. I shudder at the incredible insensitivity of people. What the hell is going on in their minds? Haven't we convinced anyone but ourselves about name calling. I feel like giving up, giving in, spilling milk and crying over it.

Four disabled parking places are taken. No one in the frigging store even LIMPS. We had to park several spaces away. I could hear Joe's breath behind me as he helped push me up a slight incline and into the store. I feel like getting on the intercom and calling out all the blue badge abusing bastards. But I don't. I roll around glaring at anyone who establishes eye contact. I'm heading for a mean mood. I need to take a mudbath in depression.

It's hard not to just throw in the towel.

Say, "To hell with it."

Become a telemarketer.

When I was younger, in my teens, these parties could last for weeks. I had the luxury of self induglence.

But I'm old now. I have to get it all in today because tomorrow's a busy day. I have things to do.

I'll have to do some mental stretches so I don't pull a mind muscle.

I'll have to moisturize my attitudes to keep them soft to the touch.

I'll have to clean up from the pity party - put the sugar free chocolate syrup back in the pantry, the no carb cake in the fridge and the fat free ice cream in the freezer - so there's room for more than just me in my heart.

Because if I let 'me' get in the way of the 'you' that I serve, that would truly be a pity.

Tuesday, April 10, 2007


It's still bothering me, even though it happened days ago in another country. As there were no direct flights from Toronto to Dublin we had to fly to and fro through Heathrow in London. On our way back we had an overnight before catching the morning flight. We got our bags and decided to go to 'Square Pie' for a bite of lunch before catching the Hotel Hoppa that would take us to our hotel. We had discovered 'Square Pie' on our way over - a fast food joint with various vegetarian or meat pies, and really liked it.

We got into the line up, picked our pies, paid and then looked for a place to sit. What with all the luggage, we decided to sit at the tall tables that ringed the restaurant rather than go inside. As we munched on our pies we were drawn into conversation by a couple who were eating to kill the extra time caused by a flight delay. They were on their way to Germany for an Easter vacation. We had told them we were coming back from Dublin and on our way home to Canada.

As we chatted we learned that the guy who had struck up the conversation was a music teacher in primary school. He asked what we were doing in Dublin and I explained that I had been there giving a lecture for Down Syndrome Ireland. "Ah," he nodded.

Now before I tell you what happened next, remember, I'm sitting talking to him in a wheelchair. They and Joe were sitting on tall stools at tall tables ... it's obvious twice over that I'm not exactly the same as any of them any more.

"Our school is accessible, it has all the ramps and stuff. But we don't have any staff or students that are ... um ... like that."

"How lucky are you," I said sarcasm dripping.

"Yes, we've managed to avoid it thus far," he said not catching the tone in my voice.

Before I could respond, their flight was called and they were gone.

I sat there stunned.

"Like that" means "not welcome" ... and it's immaterial what 'that' means. I've always known that. But to have it said to my face ...

His 'like that' has echoed in my head over this weekend and I'm not sure what to do with it.

So, I've blogged it ... I'll leave it here.

I hope.

Monday, April 09, 2007


We hid the eggs long before anyone else was up. Some were put behind picture frames, others nestled behind dvd box sets, even others were in the cd rack. I dug four chocolate bunnies out of packaging and 8 chocolate chicks out of their cardboard coop - all the while trying not to think so much about what we were doing.

I hate "Chocolate Easter."

Always have.

Well, not always. Once I understood what Easter was I just didn't 'get' the bunny. Wasn't the story spectacular enough as it was?

So I don't eat them.

Can you imagine, a fat kid refusing to eat chocolate anythings? Well imagine it. I haven't touched one since I was seven or eight years old.

Yet here I was up early on Easter morning helping to hide eggs round the living room. Mike, Merrissa and baby Ruby were downstairs sleeping away. We wanted them to awake to the egg hunt. When we invited them up for Easter dinner there was a very broad hint that an Easter egg hunt would be fun. I can take a hint.

I kept my mouth shut, bought the eggs and helped plan the hunt.

Hours later all eggs were found - Mike found slightly more than Merrissa while baby Ruby looked on kind of wondering how her parents could be so competitive over chocolate eggs. I looked at her willing her to understand what she must learn ... 'it is what it is.'

Often I'm asked "What's the most important thing you've learned from working with people with disabilities?"

I think this is it ...


So what that I don't like Easter eggs? So what that I find the Easter Bunny crass? So what?

I can have my Easter my way. I don't have to eat the damn things.

Because of the power given to my by my position, whatever position I held at whatever point in my career - direct care staff ... consultant ... trainer - I always had to remember that 'to serve means to shut up' much of the time. To keep my opinions to myself. To let someone else be the most powerful person in the room.

I've never once gotten indigestion from swallowing my tongue.

And I didn't yesterday. I watched them chow down on Easter eggs. I gently refused to have a bite - because of the sugar.

And it was good.

Simply because ...


Sunday, April 08, 2007


"He rode into the city on a donkey ..."

His voice was so sure. There was no hesitation.

We all froze. Helena beside me looked at me and then tears started to flow. She sat quietly down at the table. No one wanted to break the spell of the moment. His voice continued to read about Jesus' triumphant ride into Jerusalem.

We all knew that we were in the presence of a miracle.

But we never ever spoke of it.

Robert had come to the group home with very few possessions. He had a few worn out pieces of clothing. His favourite shirt had the name 'Jason' written in indelible marker on the inside collar. He had two packs of smokes and a lighter half full of gas. His most prized possession though was an old children's Bible that had been given to him by his mother 'on the occasion of his 12th birthday'. That he had managed to keep it for over thirty years was a testiment to his love of that old book.

For all of us the book took on talisman like qualities. Robert was never far from that thing. If he didn't carry it with him, he would have to go back to his room several times to check and make sure that it was safe in the drawer beside his bed. Upon return to the house he'd go straight to the room to assure himself that it was still there. Every night before going to bed he would say his prayers by looking at the pictures in the book and talking quietly to God.

We were all a bit taken aback by his faith. Even those who had no faith or no particular respect for religion found Robert's devotion, if not to God, to that book somewhat inspiring. I remember once picking the book up to bring it downstairs to where Robert was convalesing from a serious fever. It felt somehow fragile in my hands. As if I was carrying his trust, not his book, in my hands. I couldn't believe he let me get it for him.

But the problem was that Robert could not read. He had tried to learn. He took several literacy classes and had managed to identify letters but had no ability to turn those letters into words. The programmes would end, the assessment was always the same - Robert would never read. Whenever he started a new literacy program he always brought that Bible with him, explaining that he wanted to learn to read from that book. Sometimes teachers patiently explained that they would have to work up to the children's Bible. That Robert should try something else, something simpler first. But Robert refused. It was the Bible or it was nothing.

In the end he could read one word.


It was thought that Robert could recognize the collection of letters rather than read the word. Even so, it pleased him to be able to look through the book and point out when the name appeared.

In the fall a new minister had come to Robert's church and was quite taken by Robert's faith and Robert's bible. He visited a few times and heard from Robert and from all of us about Robert's desire to learn to read. About how he had tried over the years but had come to learn only the one word. "Well, you learned to read the most important word in the Gospels," he said to Robert who was pleased by the attention and the praise.

The minister's wife, Tony, had been a teacher before she married and took on the challenge of teaching Robert. She came faithfully every Thursday night and would sit with him and his Bible and they'd work on words. She taught him from the way she figured he learned. By the context of the story. By putting patterns together and learning individual words. She thought that if he recognized enough patterns that his mind would one day figure the rules for itself.

Robert loved the visits. She always brought a treat for the whole house. And though it was us who should have shown her hospitality, it was she that brought it with her. She was not a minister's wife, we realized, she was a minister herself. While she never preached to any of us of her faith, like Robert, it was deeply part of her.

It grew into routine. She would come. They would sit together. We'd hear Robert's fumbled attempts to read, he's start a word, hesitate and then we'd hear her gentle prompt. Two voices would become one and biblical stories were read week after week. We'd invited her a couple of times to house events, parties, get togethers, but she always refused. She wanted him to identify with her as a reader, that she didn't want him to think she'd given up on him and that the relationship had become something other than teacher - student.

Then it happened.

We all knew it the moment that it did.

"He rode into the city on a donkey ..."

Robert's voice was clear. There was no second voice. I had never heard him manage anything other than the word 'Jesus' on his own. I snuck around to look through the dining room door and into the front room where the two of them sat gathered around a TV table. Robert's finger was following the text.

He was reading.

Tony was looking at Robert with astonishment on her face. Tears were falling as Robert read. It was as if he didn't realize what had happened. That he had learned to read. He was just drawn along by the story. Her hand went to her face to wipe the tears away. The motion caught Robert off guard and he looked up at her and asked, "What's wrong?"

"Robert, you're reading."

He was the only one that seemed unsurprised. He knew that one day he'd learn. He just didn't know that it would come so soon, he said.

That day Tony stayed for coffee and we all sat around and toasted Robert. He was shy with the attention but he enjoyed it.

Over time Tony didn't need to come over any more. Robert could read. And he could read everything. Menus, programmes, and of course the Bible given to him on his 12th birthday. When he read the word 'Jason' on his favourite shirt he looked almost disgusted and passed the shirt over to us. He didn't want it any more. We thought that he'd really miss Tony and their regular classes but he never commented on her no longer coming. He knew why she had come. He knew why she no longer came.

When I left that group home for another job, I asked Robert if he ever thought of Tony.

"Sometimes," he said. Then he noticed me waiting. I wanted more.

"Sometimes when I read my Bible I hear her voice in my head, helping me with the words. But I know it's not really her, but it's nice to have the help sometimes."

"You always knew that you would learn?"

"Yes, I knew that if I tried I would learn. But people kept giving up on me. Tony was different. She believed too."

And she did.

In God. In him.

Perhaps faith in one, gives us faith in the other.


Saturday, April 07, 2007


"Just because they don't talk to you doesn't mean you don't talk to them ..."

I've said this a thousand times as part of one of the stories I tell in the 'Communication' workshop I do for staff and parents of people with disabilities. Most often I'm preaching to the converted but sometimes I speak with someone who just doesn't understand why it's necessary to speak to those who can't respond. It's an odd question, I'll grant, but I spend time talking with them and trying to get them to understand why it's important.

I've always understood it's important.

I thought.

Until Wednesday when I really got it, down deep.

I was picked up by a huge van that had a lift attached that was capable of lifting me in my wheelchair up and into the interior of the van. Very cool. Somewhat scary. Kinda fun. The driver was a big burly guy who was very effecient in strapping first my wheelchair to the van and then me into the chair. I felt quite bound and a tad claustrophobic. Once in we were off.

Traffic was very heavy and we were taking all sorts of back roads and side roads. It was taking much longer than I expected. The van driver caught me looking at my watch and then looking up worried. He started to talk.


What an accent.

I may have understood one word in six or seven. For awhile I knew he was talking sports because I could get the word 'football'. Then I knew he was talking about the docks because he pointed at them as we drove by ... but the content of his chatter evaded me. I looked at Joe thinking maybe he caught some of what he said. Joe just shook his head.

Even so, I tried. When I got something, I made a remark on topic and faired fairly well. All the concentration on the chatter had me distracted and relaxed by the time we arrived at the studio.

As the van drove away I commented to Joe that I understood little of what he said.

Joe said, "Yeah, but you could tell he was a really good guy."

He was right.

You could.

There was something about how he spoke, in his voice, that communicated something much more than words. It was the sense of the man. The sense of who he was as a guy. He was someone you could be strapped in a van with and feel completely safe. He was someone that would get you to where you were going the best way he could. He was on my side.

He knew that I had trouble understanding him but he didn't let that stop him from trying.

And because he tried, I learned what I needed to know about him.

That he was OK.

And because he was OK.

So was I.

Friday, April 06, 2007


His knuckles were bruised, I wasn't sure if it was from work or from a dust up the night before. He looked hale and hearty and as if he liked a bit of a brawl.

Yesterday, during the afternoon, I had some time off. Joe and I motored up to Swords to the shopping center there. On the way out my front tire got caught on a cobblestone and the rubber was ripped from the rim. I was panic-struck. I had to be at the radio studio in a couple of hours, and even more important to me, I had yet to navigate three airports to get home. What was I going to do? Try as we might we couldn't get the tire back on.

We decided to go back to the hotel and see if building maintenance could help. But luckily just a block from the hotel we spotted a tire and brake place called Fast Fit. We pulled in to ask for help. The guy there looked at the chair, turned the wheel around with mitts that looked like they knew exactly what they were doing. He was determined to get it fixed and me mobile again. It took two of them and it took some time but the chair was fixed. They refused payment and instead just wished us well.

Odd. Something nice. Out of the blue.

Yet on arriving at the airport to fly to Dublin we got our boarding passes and were sent to special services. Well, the services weren't very special. The guy was openly hostile about getting someone to push me to the gate. The special services room was filled with special services people but none got up to help. The door was guarded by a very angry man. First he demanded why Joe didn't push me.

Beyond the fact that it's not Joe's job to push me. Joe had his hands full with our briefcases, coats and stuff. Then he asked, loudly in front of others, if I could climb stairs. I said I could not. I would have thought that being in the wheelchair was a bit of a give away for that one. Then he moaned that if I couldn't climb stairs and there wasn't a ramp they'd have to get special equipment. I explained to him that they had told me upon check in that the plane would be at the gate and no lift would be necessary.

Then I asked if we could go to the gate now. He said "No" with finality and sent me away telling me to come back later.

Believe it or not, I didn't tantrum.

I was too shocked.

When I came back, he was gone but my confidence was back. I spoke to the supervisor and let her know that what happened wasn't OK. She didn't really, um, care.

Odd, isn't it?

That the most disability-hostile experience I've had on this trip came from those who are supposed to ... care.

And that one who didn't need to care ... did.

Thursday, April 05, 2007


I heard them as the arrived and gathered in the foyer. I had enjoyed my presentations thus far in Dublin but this was the one I looked forward to most. 25 people with disabilities - 24 with Down Syndrome - were coming to learn about abuse prevention. As soon as I rolled into the conference hall foyer I knew that this was where they would gather. There was coffee, lots of it, and Danish pasteries stacked on the tables. "Well, if they don't like me, they're gonna love the treats," I thought with relief.

I waited in the conference room getting myself into the mindset for teaching. The first two guys came in. Both looked to be in their teens. They said "hello" and were heading to a table to take a seat. As we chatted I learned that one of them was 16 and the other 18. Ouch. I made a joke that they were just kids. The 16 year old smiled but the 18 year old guy was affronted. "I am not a kid, I am an adult!" He was not kidding. He was communicating something very serious to me.

It became important to me that he understood my comment. In no way was I implying that he was not a growing adult. I said, "All I meant was that I was over 50 so anyone under 30 is a kid to me." He was still offended, "They may be," he said, "but I am an adult."

OK, point taken.

Adulthood has been a long fought for right for people with intellectual disabilities.

And we aren't there yet.

First came the battle for community.

Now will come the tougher battle. The battle for adulthood. The battle for respect. The battle to be taken seriously.

And the enemies will be different this time. The enemies will come from within. They will be agencies that are so afraid of liability that they will limit rather than free. They will be parents who are so afraid of risk that they will restrict rather than let go. They will be staff who feel that their job is to govern not to guide.

Adulthood will be a battle not fought for by us for them. But by them from us. And they will need the kind of courage that that man had. That man. That MAN. That 18 year old MAN who stood up to me and let me know that he was an adult and would not under any circumstances be referred to in childish ways. Even though I didn't mean what he thought I meant, I said what he heard me say.

Throughout the class I glanced at him and was please to see that he relaxed into the class and even seemed to enjoy it.

At lunch afterwards I noticed him looking at a woman who was very pretty and a couple years older than him.

And you know what?

It was clear.

Very very clear.

That he was a man.

Wednesday, April 04, 2007


Later today I'm going to the other side of Dublin to be interviewed for a radio programme that has it's focus on disability issues. A couple days ago I spoke with the researcher who helps put the interview together for the host. I like doing media when I travel, its a means of getting the message to others in the great 'out there'.

At the end of the conversation she explained that she would arrange for a cab to pick me up and get me to the studio. Inwardly I panicked. I have a great deal of difficulty with cabs now. Getting in and getting out. First I thought that Joe and I could drive in the rental car but then I realized that the chance of getting lost is extraordinarily high since European road planners have yet to discover the 'straight line'.

So I explained that I was in a wheelchair and of course, as this was a show about disability and the host uses a wheelchair, this was not an issue. They would arrange for a cab that can accomodate both me and my wheelchair.

My first sense was relief.

We'll make it on time and not have to worry about directions.

My next thought was about the fact that this is the first time I'm going to use adapted transportation. Not that we haven't adapted to carrying the chair in our car or to ensuring that places we go to have no stairs - but those are kind of 'soft' adaptions. This is a big one. I'm not going in the 'normal' taxi that carries 'normal' people. I had to fit this into my mind in a new way.

Does it bother me? I ask myself.

Am I giving up too much ground? I wonder.

Should I be pushing myself like those inspirational disabled people who climb mountains and run across plains? But I didn't like heights before the chair. I never ever ran before the chair. So I don't want to be heroic, inpirational or even an example for others. I just want to get to the studio and do the interview.

I guess if the cab can be adapted.

So can I.

Tuesday, April 03, 2007

Woman in the Burnt Orange Coat

The eyes got me.

I was rolling out of the grocery store and I saw her walking with a staff and one other woman with a disability. Her hair looked like she should have spent 4 or 5 months longer on that particular grooming programme. She smiled at me and I smiled back. Disability to disability kind of thing. Then, suddenly as if she'd realized she'd broken a rule by greeting a stranger, she looked quickly forward.

As I rolled closer, I waved and smiled again. She broke into a wee grin and nodded. Again, her head snapped away from me. She'd learned the stranger rule. You could see she wore the rule like a straight-jacket holding in her bouyant Down Syndrome spirit and I could almost feel her desire for a friendly 'hello' and a bit of a chat. But she knew the rule and she walked on.

As we passed her eyes glanced down at me - mine glanced up at hers. Fits of giggles overtook her. She'd followed the rule and broken it at the same time. Minor rebellion, major accomplisment.

I don't know why I'm even telling you this story. There is no point to it. It was just a wonderful moment - I wish I could describe the life and liveliness in her eyes. I wish I could describe the beauty of those eyes and their sparkle. But it wouldn't matter cause the moment may have only mattered to me and her. I guess I'm telling this story because writing it down makes it real to me.

And there is something about her I want to remember.

I think it was her eyes.

No, not the eyes, exactly.

Maybe the freedom the sense of life and fun I saw therein.

I'm glad she followed the rule of safety.

And I'm glad she knew how to be herself anyway.

Monday, April 02, 2007


"You could learn from him you know!"

I had heard them first. A rapid clomp clomp clomp of feet drew my attention. There was a young dad in jeans with two kids. Dad was walking quickly stomping his feet at every step. A young boy maybe five years old laughed wildly and tried to time his steps to his Dad's rapid beat. Another son, a couple years older yet still to young to be cynical, rolled his eyes at his brothers enjoyment.

Dad was loving it. He seemed to delight in making the boy laugh. I understood it was a nice laugh. If the twinkling of stars had a sound - it would be that boy's giggle. "What a nice scene," I thought as I rolled away to do my own shopping.

It was nice to be on my own in the store. Joe was back at Burger King finishing his veggie burger and chips. Joe chews his food so he always takes sooooo long. I decided to hit Tesco's on my own. Joe would be able to find me there. I went first to look at children's clothes, wanting to pick up something for bouncy baby Ruby, finding none I headed for the books. Joe, knowing precisely what path I took caught up with me and we began shopping in earnest.

As we were finishing we split up, Joe going to get baking soda which he actually eats as a remedy for heartburn, and I went off in search of shaving foam. As I arrived and tried to decide what kind of skin I had, I lamented the days when men had the same two choices for foam as we had for cigarettes, regular or menthol. Picking out shaving foam is boring so I was relieved to hear that laugh again.

This time Dad was walking like a big ape, swinging his arms whilst bent over. Baby boy was in hysterics. Dad might just be the funniest guy on the planet. The older boy was tired of all this and it showed. His face was a millimeter away from a tantrum. Then it happened. He swung out and smacked his brother. No tears were shed but the young boy looked up at his brother and it was then I saw that he had Down Syndrome. There was hurt on his face, he didn't know what he had done wrong.

Dad was mad.

Really mad.

But he knelt down and looked the older boy in the eye. "We were just having fun - you can't be left out if you won't play. You could learn from him you know. He knows how to play. You've forgotten."

Now there were tears. The older boy, sensing his dad's deep disappointment, started to cry. "I'm sorry, Dad."

"Don't apologize to me, you didn't hit me."

He looked at his brother but before he could say anything the young boy grabbed him and said, "I'm sorry too!"

The incident was over.

I wonder how many other lessons brother will teach brother over a lifetime.

I'd bet many.

Sunday, April 01, 2007


People confuse me.


We are in Dublin now and glad the travel is finally over for a few days. Tomorrow I start doing a series of workshops for Down Syndrome Ireland and I'm looking forward to talking with people about the services here and hopefully provide some insights through my training. But it was Saturday night and I had Sunday off. We stopped into a very crowded hotel bar for a drink after going shopping at Tesco. I love Tesco.

Most people sat around tall tables on tall chairs. I was in my wheelchair so the table was fairly high but it served as a place to set my drink and for Joe and I to congregate around. Beside us was a group of young people. You could tell they'd grow up to be business people because they had that look about them - the I want to be a giant of industry kind of hunger. The woman, wearing a suit that was both conservative and sexy, was getting quite drunk. She was going on and on about how 'weird' she was because of something minor. Something not really weird.

A guy at the table countered, "That's nothing ..." and went on to explain what made him different, unique, bizarre - and again it was something mundane. Not worth recounting. But then the whole table got into their converstation about how different they were. It was like they wanted to assure themselves that they weren't just normal, mundane, ordinary people.

Then into the bar came a guy with cerebral palsy. He wasn't using a wheelchair and as he walked he was a jumble of knees and elbows and shoulders. He walked with effort. With determination. With purpose. He headed towards a table and when he got there he stood against it. Braced. An island that rescued him from the sense that he could topple at any moment. As he gathered himself for the assault on the bar for a drink, I noticed that I was not the only one to notice him.

The table next to me, silenced. They stared, almost gawked at him. It surprised me, they hadn't gawked at me. But then, I realized, in my chair I sit quietly. I look like a fat guy sitting down. I just have 'sitting down syndrome'. I'm not sure they even really noticed me as they were deep in their 'God, I'm just so crazy' conversation.

Cerebral Palsy firmly in check the guy made his way to the bar and ordered a drink. I suddenly remembered a comic with CP telling a story where he was explaining to a cop that he was not drunk he had 'cerebral palsy' and the cop said, "That's an awfully big word to say when you're drunk." I smiled.

They didn't.

They couldn't tear their eyes from him. One subtly shook his head. The woman glanced away with a mixture of pity and disgust.

Hold on.

Just a minute ago they wanted to assure themselve that they were different.

And now.

Right now.

They just proved how incredibly normal they were.