God

There are reminders everywhere that I am in an area of the United States where there is a strong Christian base. Unfortunately, I don't pick this up because people are kinder, drivers are nicer, respect is everywhere. Oddly, one often gets cut off while driving by someone with a sticker of a small child praying at the foot of a cross. The name of Jesus is everywhere on bumper stickers - which is cool, everyone has a right to proclaim their faith.

But.

And it's a big but.

I was rolling my wheelchair down the lane at King Sooper's grocery store and a woman approached me, her husband blushing behind her, and told me that she would be praying for me. Then she offered to 'lay hands' on me right there in the store and ask for Jesus' forgiveness.

And I went in to get raspberries, not tales of ressurection.

I thanked her and told her that there were others more in need of prayer than I was. That my life was fine. "Do you know Jesus, then?" She asked. Her husband looked at me with apology in his eyes.

"Yes, I do," I said.

"Really, and you're still crippled."

Now I was mad. I asked her to please leave me alone and that, when I got over my anger, I would pray for her. She looked confused. "My body is in a wheelchair," I said, "but my soul is free - it's the opposite for you."

That took her a moment.

"How dare you," she blustered.

"Well, how dare you," I returned.

"Come on dear," her husband pulled at her arm.

"At least I can walk," she spat at me. Spat!

"At least I am happy," I responded rising to the fight.

She was gone around the end of the aisle and I was left with my heart racing, tears in my eyes and guilt flowing through me. I don't know how to handle these situations.

Its a day later that I'm writing this and I still get tears in my eyes thinking of her assumption that my faith was invalid, that I was invalid, that I needed her prayers - as if God could not love me without her begging for me.

So, I did pray.

And asked God to forgive me my temper and my quick tongue.

And later, prayed again and thanked God for my temper and my quick tongue.

I think the last one was more honest.

Tee

It's been in my head for days.

Ever since the conference in Vermont where I saw it. I think of it constantly because there are reminders. It was a tee shirt with a slogan on front. The slogan stays with me ... like a song I can't get out of my head. Things set it off.

There's a guy with a disability who works at the hotel I stayed at in Denver.

There's a woman with a disability who's taking care of child and family.

There's a group home for people with disabilties in my neighbourhood ... doors down from where I live.

I see the reclaiming of rights, reclaiming of society and reclaming of 'everyday life' by people constantly. I see the boldness in their eyes. I see the understanding of the importance of being out and being there. I see self advocacy in the very best sense.

Yes, people with disabilities are out and about, living community lives. It wasn't like that only short years ago. I went to a school as a child that had no kids with disabilities in attendance. I lived in a town where I never even saw a wheelchair. I watched television that excluded all put pretty white people.

Now they're here. Home.

And every time I see them, now, I think of the tee shirt I saw. It makes me smile and it makes me proud to be part of the movement ...

SELF ADVOCACY - BOLDLY GOING WHERE EVERYONE HAS GONE BEFORE

Victory

Sitting quietly, almost unnoticed by all, having a coffee and flipping through a magazine. Ordinary, every day sight. Nothing in her movements drew the eye. Nothing in her demeanour caught the attention. Nothing in her style gave a single hint. She was just a young woman reading a magazine and having a coffee.

I only noticed her because I was watching for Joe to return with the sack of books and magazine that he was purchasing at the till while I was scoping out a table in the cafe. To watch for him I had to look directly over her head. Thus she was in my sight line. And I didn't know.

Joe joined me, we got tea and settled down to browse through our purchases. The bookstore in Fort Collins was just a few blocks from our hotel and we'd decided to just relax here and then move in there. It was then she got up and went to the clerk. She asked for a pen. "Do you have a pen that I can borrow."

9 words.

Spoken a fraction too loudly.

Spoken a second before the clerk was finished serving another guest.

It was enough.

And we all knew. She had a disability. A mild one, but a disability nonetheless.

I had to cover my ears to shield them from the sound of expectations falling. I had to avert my eyes away from annoyed faces - not annoyed at the disability, but annoyed that she'd tricked them. Fooled them. How dare she 'look' normal and 'be' different.

Oh, and she knew. She saw the faces. It disturbed her, I could tell, that she'd been found out. That others now glanced at her with curiosity - maybe a wee bit of hosility. They hadn't liked being tricked. They liked the idea of living in a world where difference was obvious. Where they could protect themselves because of the obviousness of a Down Syndrome eye or a Williams Syndrome ear.

She sat down into a different social reality than the one she had stood up into. I could almost hear her curse herself for asking for the pen. For making the slip.

But as she sat there, she focussed again on the magazine and made a note in the column. You could see her jaw set. She put the pen down, picked her coffee up and then looked around the room. Daring people to meet her eyes. She came to me and I didn't break gaze with her, I just nodded and smiled.

I knew what she was doing.

She was reclaiming ground.

She was Rosa Parks at the front of the bus.

She would not be moved.

These are the acts of everyday heroics of people with disabilities. The tiny acts of social rebellion that will one day remake the community, retake the stage.

She finished her coffee. Returned the pen. And walked out of the cafe.

On her terms.

They had tried to shame her.

And ended in shaming themselves.

Victory.

Thumb

I don't typically notice my thumb.

This week, though, I have been thoroughly disabled for the first time in the year and a bit that I've been in the wheelchair. I don't know how it happened but I badly sprained my thumb. Suddenly, I'm immobile without help. I use my hands to push me about and can get from place to place easily and well.

Now I sit and wait while Joe runs into the store, or read the paper when he grabs lunch to bring it back to the car. I don't want him to have to push me everywhere, he's getting older too. So, I sit and mourn the loss of my thumb.

To look at me you'd think that I was disabled because of my legs but it's my thumb that brought me down.

Somehow this seems very important to me.

I can't tell you how many times, when doing assessments of others, that I haven't noticed the thumb. I can see the problem behaviour, that's easy. I can see the concern of those who care, that's even easier. But it's hard to see the thumb.

One guy I did a huge assessment on, had all sorts of ideas for why his behaviour had deteriorated. We investigated everything. He looked unwell, so he saw a doctor. He looked sad, so he saw a psychiatrist. Everyone had ideas. Everyone had plans.

So, after being called to his home to deal with yet another tantrum. Another outburst. I went and sat with him. Told him I didn't know what to do. How to help him.

"Change it back," he said. Crying.

"I'd change things back if only I could," I said, not understanding.

"But you can," he said, "everyone can but no one will."

I was lost.

Inspiration.

"Can you show me what needs changed?"

He nodded and took me by the hand and led me to his room. I stood at the door and watched as he went in and turned on the radio. Rock music poured out. "Change it back. Please."

"You want your radio changed back?" I asked. He nodded.

Turns out we couldn't change it back. The station he listened to had changed formats and now, instead of country it played rock.

We found a country station.

We changed it back.

So did he.

The thumb.

I didn't notice the thumb.

Dog

Writing a post on a blog every day is a new challenge to me. It was easy for the first, say 100, posts. But then I had to tax my memory for nuggets and I found myself paying very, very close attention to what was going on in my world. As they say, "everything is copy" and that became really true for me. I store images away and hope that they will come together in an interesting way.

I was thinking about this last Sunday when we were downtown Toronto. I got the urge for a veggie dog and Toronto hot dog venders have the best in the world. We headed to a cart that we knew on Queen and Spadina. It was a beautiful sunny day and we had the windows down and the music up. We both felt 16 again - except in a much nicer car. We both still miss the dogs like crazy but we gleefully point out pooches we see on the sidewalk.

"Look, quick, over there," Joe said excitedly and I glanced to see a brindle dog of an interesting lineage. The dog was running with an odd lope. Then I saw that his bag right leg was missing. Gone. His gait was an adaption for his disability. But there he was, running hell bent for leather down the sidewalk. He glanced back, like something was chasing him, and I swear he smiled. Then he disappeared down an alleyway and was gone.

It was such a powerful image to me but I didn't know how to use it. I loved the fact that his 'dogness' was not even slightly compromized even though he was missing 25% of his legs. Sure, he'd adapted for the loss physically but psychologically, he was still just a dog. It was beyond cool.

I thought of the dog again when Joe and I went computer shopping the other day. I'm going to get a wireless laptop and we went into a store that sells electronics. These stores intimidate me and I immediately feel slow and stupid. Especially when kids, not old enough to shave, talk to me in a language I don't understand about things so abstract to have no meaning to me. I don't think I would have noticed at first if I hadn't been in the chair. He held his hands oddly as he spoke. Since my eyes were even with where his hands were I saw that one of the hands was formed very differently than the other. He did everything he could to keep that hand out of view. I understood why, I'm sure he has a long history of stories about that hand and the social reception it's gotten.

But I needed his help in getting to the computer I was interested in and he had to use that hand to pick it up. He blushed. I don't know if it was shame or fear, or maybe both. But I didn't give two whits about the hand, I just wanted to see the computer. So we talked and decided to buy a computer that we then find is out of stock. Great. But as we thanked him and left the store I just wished for a second he could have seen that dog running down the street. Just running. Just being a dog. To hell with everything but dogness.

Again I thought of that dog when I was at the Vermont conference, after my first presentation to people with disabilities a woman came up to speak to me. She typed on a keyboard faster than it should be legally allowed and then held the keyboard up and a voice spoke. She asked a question about the presentation. Then she said, "I like your blog" and introduced herself as Ballastexistenz. I flipped. I love her blog and told her so. She's a brilliant writer because she's a brilliant thinker. It was an honour to meet her.

We agreed to talk again later and we did. We actually managed to have a couple very long chats. The fact that a communication devise was used made no difference to the flow of the conversation and the sharing of ideas. It was exciting to talk with someone who views the world in a similar manner, who understands the nature of prejudice and further has a keen sense of personhood in a world that robs people with disabilities of that status. It was transformative. With a suddenness that is unusual to me, I trusted her and shared things I don't tell most. It was so easy to just 'be' with her.

Then, I remembered the dog.

Running.

Adapting with every step to a disability never forgotten but seldom remembered. For awhile I thought that that kind of 'state of being' was a 'state of mind' forbidden to us as humans.

I was wrong.

The Boys

They were like puppies that spilled all over each other. There were four or five of them, it wasn't easy to tell exactly how many there were. They had come to the Vermont sexuality conference and were there to have a good time. All of them were still in high school and they roamed the hallways of the hotel like a pack of boys.

I met them in my first session for self advocates on abuse prevention and again in my session on building healthy relationships. They were so full of testosterone that their hormones clustered in the air above them. They participated, fully and loudly. They put the 'boy' in boisterous. They were, in a word, charming.

It took me a bit to figure out who they were though. You see I had read the brochure of the conference and saw that there was going to be a session on 'self pleasure'. Masturbation. A whole session. When I read the description of the session, I noted that there were five or six people listed as instructors.

During my first session with the boys in attendance the let it slip that they were teaching a session themselves the next day. Yep, they were going to teach the session on masturbation. Teen boys, masturbation, it's not a great reach to figure that they'd be experts on that particular subject.

So I joked with them about their session and they laughed and hooted. They all said they weren't nervous about the subject or the topic. Indeed they seemed to be looking forward to it. Something about this whole thing really got to me. I was thrilled that these kids were that sex positive and I was moved that they had wanted to teach others to love themselves, their bodies and their sexuality.

As it happened, I was doing a session for care providers in the next room to where the boys (and girls I find out later) were teaching. At first I heard bouts of laughter from the group as the session started. And then an eerie silence. Whatever they were doing over there, it was obviously being taken seriously.

I rushed to leave as I had a long drive home so I didn't get to see them again. But I thank them here. They gave comfort to an old guys heart. They assured me, in their own way, that things are getting better. That times, they truly are achanging.

Do you think, maybe, there really is hope?

laughter

"That guy was good this morning."

It was a nice but odd thing for him to say. I was 'that guy' who had just spoken. I was to do another session and here he was sitting with me as the room was filling. I said, "I was the guy who did the presentation."

As a fat, bald guy in a wheelchair, I don't often have to identify myself.

He said, "Oh ...."

Then deciding to continue. "I was in a car accident when I was 16."

He pulled out a old wallet and flipped to a very, very old picture. "This was my cousin. He was killed in the accident, his head was severed off." I looked at the picture of a very young man and said that I was sorry about the accident and his loss.

He nodded and said, "I was in a coma for a long time and woke up with metal in my head." At that he pounded his head and I could hear metal where bone should have been.

"That's why I didn't remember you. I have short term memory loss."

Before I could comment, his face changed as if he was thinking of more to say.

"It took seven years of them telling me I had short termmemory loss before I finally remembered."

Then he smiled. I laughed.

"That's funny." I said.

"It is now," he said.

"Time makes a difference."

"Not to me it doesn't," he said laughing again.

"Yeah, I guess," I said.

"You need to laugh about these things because after a few years, they aren't sad anymore, they are just kinda funny."

The session began and he participated well.

Before I left I sought him out to say goodbye, he looked at me, "Do I know you?"

"Sort of," he said.

"I have short term memory loss," he said.

"I remember," I said.

"So do I now," he said.

And we both laughed.

Sometimes, it's just funny after a while.

It's something to remember when someone first comes disabled -- first come tragedy followed quickly after by comedy.

It just takes time.

Between

They were exciting times. We were all there. All on a mission. It was a brand new group home set up to welcome people home during one of the first waves of deinstitutionalization. Every single staff had personal reasons to be there, to be part of the movement to bring people home. They must have interviewed well because every single one of us had personal passion and a zealousness about the job that was staggering. Not only that we were as diverse as a group of white people could be ... we came from different backgrounds and differing beliefs and divergent life situations. It all added to the mix.

And did we fight. And argue. And debate. We tossed philosophical concepts around with abandon. Staff meetings were full of opinion and dissent. People with disabilities, those who lived there were oddly the subject of the debates but never actually a part of one of them. We talked about Normalization and about Integration and about Freedom.

Long before Survivor ever aired we had camps and allies ... skirmishes and victories. There were those that were in and those that were out, and sometimes on various issues the alliances changed and the boundaries between groups became porous. It was fun, and healthy ... every opinion was aired, every point of view taken into consideration. We were growing as a group and as individual staff.

Then we were called in by the supervisor to a manditory - all in - meeting. We were informed that the subject of sexuality, which had been hotly debated, was closed. The answer was 'no' there would be no sexual expression allowed in the house. For weeks we had been talking about the residents right to have 'guests' in their room for 'private time' ... this was 20 years ago, we were ahead of our time we thought. Then it all collapsed, the discussion was cut short. Even those on the 'no' side were upset that management had just decided. All except one staff who, normally boisterous, was quiet.

We figured it out in the meeting and confronted her.

She was resolute. She admitted that she had been upset by the discussion and had gone to the supervisor and said that for her this was a 'workplace' issue and her rights as an 'employee' were on the line. She would be uncomfortable with the residents having sex and she felt that she would be working in a hostile environment if we adopted a liberal policy.

I was gobsmacked.

I still am, years later.

What happened to the idea of boundaries. I am me and you are you. It seems simple. What you do does not affect who I am. What I do does not affect who you are. I have a strong sense of self, I can be with people who have differing opinions and differing ideals even differing behaviours and not feel like my soul is under threat.

This should be especially true in the field of human service. To any population. I am here to create living situations where people can be who they are, who they were created to be ... I am not here to justify my values by imposing them on others.

There has to be a space between ourselves and those who we serve. A space to breathe and to differentiate.

There has to be a space between our values and our voices. Where we learn to harness ourselves for the good of others.

There has to be a space between our control and our grasp. Where we learn to subvert our inclincation to power.

I have to learn to restrain who I am, and the power that I have ... it should be a fundamental question in interviews ... how do you hold you back so that they can be freely they.

In between me and you ... there must be respect.

And, on my part, silence.

Let Me Show You

"You know what really bothers me?" he asked. We all paused to listen, he had proven himself to both me and the group. He was a deep and thoughtful guy. Earlier he had spoken about how he almost never, as a man with cerebral palsy, got to finish his sentences. While he spoke with humour, everyone who heard him understood the message behind the words. "Respect me, listen to me, take the time to treat me as an equal."

So now that he had decided to speak again, we were all prepared to listen. It amazes me how, in sessions with self advocates, patient each is with the other. "It bothers me that when I go to a club or out for a beer I get asked, sometimes before I get asked my name, I get asked if I can have sex and how I do it." We were all shocked, then he asked me, "what would you say?"

It took only seconds before the answer appeared in my mind and on my lips at exactly the same time. "I'd say," I said, "Yes ... and let me show you."

The room roared with laughter. His hand shot in the air and then laughter poured out of him. "That's perfect," he said through gulps of laughter.

I'm thinking of him a lot today because I'm on my way to Vermont to give a talk about sexuality and disability to several hundred people - an exciting mix of self advocates, staff and family. somehow I want to represent him well. Speak to them about social castration of men with disability of sexual oppression of women with disabilities.

I remember doing counselling for a couple with a disability who had been married for years but who had not been able to have sex. Though they loved each other they had incorporated into their very souls negative messages about sexuality. They each wanted to be intimate with each other but they each feared sexuality deeply.

We explored those attitudes and found little bits of health and built on those. They learned to caress each other, hold each other, express love for each other in non-sexual ways. As the intimacy built as the 'heavenly permission' was granted, they expanded their exploration of each other.

Then they came in to see me with a twinkle in their eyes. They had exciting news, they had been together sexually for the first time in a five year marriage.

"It was good, Praise God!" she said.

And you, I asked him, "It was better than a slice of ice cream cake."

"Two slices," she said.

Reclaiming sexuality, reclaiming personhood, reclaiming joy.

All part of the journey.

Rarely

Intense. Fierce, it was.

Ruby sat on my stomach, well I don't have a lap, and looked straight at me. Straight into my eyes. Like she was transfixed, her gaze bore into me. She wore a knitted cap, bright orange sun glasses and a plug was firmly in her mouth. After a few more seconds, her face slowly began to change. Uncertain at first, then a big, big smile. It was the first time that she recognized me, knew me for who I was.

It was a lovely feeling. Being seen. Being recognized. But even so it was slightly, oddly disconcerting.

It's happened before, of course, and of course as is the nature of the beast, it happens rarely.

I particularly remember a day many years ago doing a counselling session with a frail young woman with Down Syndrome. Pain spilled through the hole in her heart and talking with her was like wandering aimlessly from one fresh ordeal to another. I sought the source of the river of tears but never felt even vaguely close. Till one day she lowered her eyes and spoke, "You know don't you?"

It wasn't clear what she was speaking of, or who she was really speaking to, "You know."

I asked her, gently not wanting to break the moment, what she meant.

"Being hurt, you know."

Breath caught in my chest. Of course, I knew. I fled across country, within my own flesh, fled the demon of memory. "And you know too," I said.

"Yes."

That was the word that bonded us. We knew each other. We recognized each other. Though victims may be outwardly different - there is an inner comradeship. Something others can never really understand.

She didn't get better. She didn't heal. She lived with her pain in her way as I lived with mine in mine. But when together, we were safe - one with the other.

But it was a moments recognition.

To be seen. Recognized.

It doesn't happen often. He was being wheeled by in his chair as I was being wheeled in mine. We had forgot my wheelchair gloves so I couldn't wheel well myself. The person behind him was engaged with in a different world and he passively sat. Our eyes met for an instant and in that instant there was recognition. A vague smile crossed his face - a greeting I've seen now many times. Just for a moment - seen. But not just seen, recognized as sharing difference. The safety of a glance without fear of the hostility of the stare.

Ruby soon broke gaze and discovered the knobs on the radio in the car. This was something much more interesting so she leaned way down to grab at them. My hand was holding her, keeping her safe as she tugged and turned at the controls. Her weight settled, she had recognized me, known she was safe and then turned back to the world.

It happens rarely.

Recognition.

Blog Against Disphobia / Disablism

May 1st - Blogging against disphobia (disablism) day

Please participate through your comments, also drop by Diary of a Goldfish (www.blobolobolob.blogspot.com) to see the list of blogs participating and visit other disability blogs and let them know what you think, encourage dialogue - celebrate difference, diversity and disability.

My Blog to Note the Day:

Suddenly I understood exactly what she meant.

I had gone grocery shopping with friends at our local A and P and when it came time to check out there were three lines open. The till that is accessible wasn't one of them. This meant that I had to give money to my friends and then roll around and meet them on the other side because the aisleway was too narrow. I stopped at customer service and asked to speak to the store manager. He came, huffing, puffing and carrying boxes, up to the counter. The clerk indicated to him that I wanted to speak to him.

My point was simple. If they were only going to have one till open, it should be the accessible one. It isn't a hardship to the store, to their employees, to anyone. It's not a 'special' adaption they have to make for me. It's just thoughtful. And appropriate. And the right thing to do.

He nodded. Vacantly. Muttered something about me 'having a point'.

I let it go. He said the right things. I just knew he didn't care. Wouldn't do anything about it.

So I understood what she had to say.

It was at the self advocate conference last week that I met her. She came up to the podium where I was seated during the morning break. She was short, dark-haired and determined. In the morning session people had called out various things that had made them feel ... glad, sad, mad and scared. It was just a quick exercise to affirm our right to feelings and our right to express how we feel.

She must have put her hand up, I must have missed it. No surprise, it was a huge room and she was a tiny woman.

As I was on a stage, she peered up at me and said, "I have something to say." I smiled and bid her go ahead. I was curious as to what had brought this woman with Down Syndrome up to speak to me. "What makes me happy," she said, brushing away tears. Suddenly she was crying and had to stop. I was confused. She was going to talk about something happy, but tears were falling.

After a minute or two, she pulled herself together.

"What makes me happy, is when people listen to me. Not just nod their heads, but listen to me." And she was crying again.

"They don't listen much, do they?" I said.

"No, they don't," she said, "But when they do it makes me really happy."

I asked her if she would like to come up and do a roll play in the second part of the morning workshop and she said, shyly, that she was a little afraid to be in front of everyone. I suggested she try and instead of looking at the crowd, all three hundred of them, she could just look at me. She agreed to try.

She came up and did a role play about saying 'no' to a bus driver who tried to grab her. When done the crowd cheered her. She wasn't so small anymore. As she turned to leave she said, "They listened."

I winked at her and she broke into laughter.

"They don't listen to us much do they," I said in my heart - telegraphing my sentiment to her across the miles, she in Missouri, me in Ontario. Somehow it doesn't matter if she heard me, it only matters that she understands. "They don't listen to us much ..."

But they will.

One day they will.

Because we've had the dream.

One day, together, we'll have the power.

WHO RAH

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.

WHO-RAH

Shufffft

"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.

Here

Breakfast!

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.

Sight

"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."

internet

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.

Liberty

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.

Today

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.

Thrice

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.

Together

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.

Freed.

And my new chair is waiting for me.

Rah!

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