The Evolution of Freedom

What a group! In Madison, Wisconsin, I was working with a group of about 50 people with disabilities about the subject of their rights. These were people with disabilities who were very familiar with self advocacy and by and large had all found their voice. Keeping control without being controlling was extremely difficult - fun, but difficult. We laughed a lot. At the front sat two people with multiple disabilities. He, slumped over in front of a communication machine, she with her hand resting slightly on his arm. They looked like they were enjoying being out, being with each other but, to be honest, I wasn't sure how much they were 'with' me.

As we talked as a group about what made each of them happy, he indicated that she was his girlfriend and that she made him happy. She beamed and said that being with him made her happy. What a lovely couple. Then it was time to get on with the work and discus rights. Issues were raised at lightening speed and I had to keep slowing the group down so that Joe could get everything written on the flip chart. These folks had a list of rights they wanted from their care providers and were very willing to put it all on paper.

Suddenly.

It's always suddenly ...

A mechanical voice spoke ... "We want the right to live independently in the community." My eyes flew to the little man slumped in front of the voice box. "Was that you?" I asked stupidly. His eyes twinkled and he nodded. We then joyously celebrated him breaking into our chatter with his thoughts ... he had made his presence - no - his MIND known to us. He let us know that community living was in his heart. His girlfriend looked at him with such pride.

I asked him what his name was and his support staff told me that his name was "Darwin". I kid you not, I just met Darwin.

When we presented the Bill of Rights to all at the Madison conference (staff had been elsewhere doing other things while we worked on the bill of rights) I asked various of the self advocates to come up and read each of the rights to the audience, but I asked Darwin specifically to come up and present his right. He agreed. I then asked Darwin if I could write about him and what he said on my blog,and he nodded that it was ok.

Here's how I introduced Darwin to the audience - and here's how I introduce him to you ...

Meet Darwin a guy who is truly and completely, evolved.

Snap

I think somethings snapped.

Last night I came out to use the computer and saw a young mother with a beautiful little boy of 8 months. We chatted briefly and his eyes grew huge while looking at me ... kind of like he was trying to fit all of me in. I didn't say anything to Mom 'cause I wasn't quite sure but he looked like he had Down Syndrome. But it could have gone either way. So, I let it go and we just chatted. Smiling I went to work on the computer.

Afterwords I was thinking about her and the thought popped into my mind, "Gosh, I really hope he is." Forgetting for a second that we lived in a world that devalued kids with Down Syndrome and disability, I just thought about the 'ride' that mom was in for - the unexpected joys - the land that she was about to become a citizen of - the opportunity to relearn and redefine joy. I guess it was because I'd spent a couple days talking with some mom's of kids with Down Syndrome, maybe because I'd just spent some time talking to a young guy with Down Syndrome who was with his family at a conference, maybe it's because I'm finally at the point of realizing that disability does not equal tragedy.

I know, I know, I don't have kids. I know, I know, I don't know what it's like - really.

But, but, but, there are some many people who I meet that have had their lives so fully enriched by parenting kids with Down Syndrome. The look of the parents at the World Congress in Vancouver were like they'd been given a ticket to an exclusive club with it's own language, it's own sense of humour, it's own unique view of the world - I was suprised that there wasn't a secret handshake to go with all of it. Watching, I felt like an outsider - envious of the connection these parents had with each other and with their kids.

So forgive me, I'm not wishing Down Syndrome on some poor family, I'm wishing purpose and meaning and joy on some lucky family - because of Down Syndrome.

Something snapped in me - and I feel freed.

Training

Her eyes flashed anger.

But perhaps it's best if I put you into the picture. Joe and I were out for lunch on a weekend between gigs. We had just pulled into a table when I heard two sounds I have come to recognize over the years - one was the soft wrrrrrrrr of an electric wheelchair, the other was the soft clicking of a dog padding along on tile. They were seated at the table across the aisle and the woman in the chair, a pretty black woman, smile at me - a "nice to see another one", smile.

The woman was with two others who sat at the table. As soon as they were seated and before the waitress came to offer water or coffee she looked down at the dog and said, 'please'. I swear the dog nodded. Then with purpose the dog got up and strolled round to the back of the chair, jumped up and nuzzled into the canvas bag at the back of the chair and got out a knife that was clearly made specially for his companion's hands. He gripped it around the wooden handle and jumped down and walked to her and got up to within her reach, she took it and said "Thanks". He looked at her, searchingly and she again said, "please". The dog then repeated the routine bringing her a similarly adapted fork. This time when he looked at her she just said, "No thanks."

Her friends were astonished and she explained, "I don't think I need the spoon." The dog laid down beside her. He was dressed in a vest that had 'please don't talk to me, I'm working' printed on the back. The woman and her friends chatted and I noticed that a while into their lunch he lifted his head and then rested his chin gently on her feet. I got a bit teary because I know what that feels like, and I know what that means. Eric used to do that sometimes when we were sitting on the couch. If he was feeling really snuggly and really close to me he'd move close in and put his chin on my ankles and go to sleep. It's a lovely feeling.

She glanced down and him with a smile almost imperceptablely forming around the edges of her mouth. Her friends talked to her about her dog and you could tell she was in love with that animal. Then one of her friends made a joke, "I wish we could train men to be willing slaves like that dog is for you."

Mistake.

Fire flashed in her eyes.

Her friend saw it to and silenced immediately.

"This dog is not my slave. This dog is my friend, my partner, my companion. We do things for each other. I would never treat this dog with disrespect. I don't even feel like I own him, I feel like we live together. He needs me and I need him."

"I'm sorry," her friend said.

The moment passed and they moved on to other conversations but you knew that a line had been crossed. During the interchange it was like the dog knew he was being spoken of, he lifted his head up and listened. I think he could hear the emotion in his partners voice - he looked at her face wondering if everything was ok. When her voice returned to normal, he lay down again. You could see he was ready to protect her if she needed it, his life was hers.

When it was time to leave. She wiped of the knife and fork and one at a time he put them back in the bag. Before she backed up he moved around as if to signal to everyone that she was going to move and then they slowly left the restaurant.

The dog looked back, for a moment, at the woman who had called him a slave, then turned and ran happily longside the wheelchair.

"You'd think that damn dog knew," she said.

"Maybe he does," I said and took her aback.

But I'm guessing he knows more than that he was insulted, I'm guessing he knows he's needed, I'm also guessing he knows that his role of 'support' does not make him 'servant' and his role of 'support' does not make him 'superior'.

Who trained that dog? And can I go for brush up lessons myself?

Special

I went into a kind of blogger withdrawl. We headed out to Frankenmuth in Michigan and the mapquest promised it was a drive of just over 4 hours. But the damn computer hadn't figured on the tie up on the 401 or the 402 being totally shut down or reaching the border at shift change. We got to the hotel, no internet access as promised and trust me Frankenmuth does not have a trendy internet cafe. I talked the hotel clerk into letting me post a brief note saying 'no posts' and that was it. Got to the room to order pizza, the pizza delivery guy had slid into a snowbank so no delivery that night. Not the best of days.

But the next day I did a workshop for teachers and a few parents slipped into the crowd. We had lunch together in a Bavarian chicken restaurant that had a woman who'd seen better days in the 30's playing German music on a squeeze box. Lovely, charming to read about but annoying in real life. But what was cool was that we ended up sitting across from two of the parents who had come for the day. They were both parents of kids with Down Syndrome and part of a Down Syndrome support group.

Lucy and Barb, I hope they don't mind me using their names, were wonderful company and full of tales of their kids. They talked about one of their projects as a group. They did educational sessions for doctors about Down Syndrome to try to get Doctors who talk to new parents to think differently about kids with Down Syndrome and their potential. They said that so many parents had horror stories about the kind of things that doctors said to them - their hope was that Doctors were educable! And if not educable, trainable.

Interestingly the parents had discovered that the best education that doctors could get would come from their children. They ensured that their kids with Down Syndrome were there as real live testimony that their lives were full of school, of kid kind of interests and activities and kid kind of hopes and dreams.

Their eyes lit up as they talked about their kids learning to do presentations and to speak positively about life AND about Down Syndrome. Their children gave the lie to all the horrible messages of doom and devastation that many parents are subject to when they are first told about their child's disability.

Amen to Lucy and Barb, Amen to their kids, Amen to everyone who works tirelessly to end stereotypes.

These women aren't paid to do what they do, they do it because they believe in their kids, they believe in parent's rights to honest information, they believe in speaking out and speaking the truth.

I've never liked the language that refers to people with disabilities as 'special' but I came to realize that sometimes their parents are ....

Just Boys

It's odd isn't it?

When we were young, like in our early 20's, we felt like adults. We felt 'all growed up'. Well, at least I did. University conferred on me knowledge. A job conferred on me adulthood. I was all that. Driving, smoking, drinking, I did all the stuff that adults did.

But now that I truly am an adult, I see these twenty year old kids and wonder at how very young they are. I get pulled over by police officers who only shave once a week but swagger like they've lived a life and a half. My doctor is a mere boy ... who looks too young to drink but who hands out medications to tottering old men like me. I sit in meetings with people who still have sand from the play pen in the cuffs of their pants.

Kids.

They're just kids.

I've been home sick for the last few days. I came back from British Columbia with a ache in my gut a condition that makes me 'hurry' to the washroom. I feel wan and tired. Old and cranky. But today, I'm feeling better. Talked to the boss on the phone. Worked on my emails a bit. Got stuff ready for the Ruth Ryan Meyers conference we're holding here in Toronto. That kind of stuff. Tired myself out, nicely.

As I sat on the couch, Mike, who was up here working on a project for Diverse City, came up from downstairs with a handful of pictures. We have a box downstairs of photos that we've taken over the years. He thought that seeing some of the early pictures of Fred and Eric, our dogs who died of old age last year, would cheer me up. And they did. I still grieve them but it was nice to see pictures of them as wee pups.

Pups.

But acting like they were grown up dogs. In each picture they were rolling around, play fighting, barking at something, chewing something, sleeping on something. Playing at being the big boys they would become.

Then as I flipped through the pictures, one stopped me in my tracks.

My jaw fell open.

I don't remember taking it.

I don't remember having it.

But there it was.

A picture taken at Glendale, on the ward, Lodge 11. My first job.

The picture was of a group of men sitting around the table. And as hard as I tried I could only remember one of the names. John. I've written about him before here on this blog. Philip wasn't in the picture but there were all these other ... these other ... these ...

... boys.

They were kids. They were so so so so so so young. Why don't I remember them that way? I remember them as being big men. Behemoth behaviour problem guys. Not these skinny little boys.

Their eyes look at the camera and they seem so lost. They were home ... and lost ... at the same time.

I never noticed.

I was too busy being a man. An adult. A growed up staff. To notice.

To really notice.

That we'd caged boys.

Mere boys.

Children.

What were we thinking?

The Good Girl

It was truly frightening.

I'm just now getting my head around it.

Let me explain.

Several times a year I'm asked to do an abuse prevention workshop for people with disabilities. As part of that workshop we do a role play wherein Joe (who assists me in doing this workshop) plays a staff and in that role asks someone with a disability, "How was your day." The person with a disability responds, "I don't want to talk about it." Then the question is asked of the group, "What would a good staff do next?" The answer we are looking for is some version of, "The staff would say, 'That's OK you don't have to talk about it now. We can talk about it later if you want."

This role play is informative to me - it lets me know what kind of world that people with disabilities live in, how they see 'good' staff. I've had all sorts of responses to this question, "Put her in the side room," "Take supper away from him," "Lock him outside," "Don't let her use the phone," "Put her on the floor." Shocking, but a glimpse into how some staff use power in their reltionship to those in care. Disturbing, but not the point of this blog post.

Recently we did this role play and a teenaged woman with Down Syndrome volunteered to be in the role play along with Joe. She nodded that she understood her line, "I don't want to talk about it." So Joe said, "How was your day?" She responded, "Fine." We all laughed and I reminded her of her line, again after Joe delivered his line she said, "Fine."

I then asked her if she ever had a bad day, "No," she answered.

"Never?"

"Never."

Already I was wary but I explained that this was just acting like she sees on television or the movies. Grudgingly she gave her line, "I don't want to talk about it." We all cheered. She smiled.

Later, at break she came to speak with me. Her eyes were full of purpose and her blond bob bounced as she strode up to me. She waited politely for someone else to finish talking to me and then she said, "I'd never act like that." I asked her what she meant. She said that she'd never be rude like in the role play.

I asked her if she ever got angry. She said, "No, I'm happy."

"All the time?"

"All the time."

"Really?"

"It's not polite to be angry. It's not nice to answer back." She spoke with the emphasis of a zealot.

"But what if someone is hurting you? Would you speak up then?"

"No, I'd understand."

"You'd understand?"

"Yes."

"Would you tell your mom or dad if someone was hurting you?"

"No."

"Why?"

"You don't tell on people. You don't get people into trouble." This girl knew rules. Rules dominated how she thought.

I explained that this workshop we were doing was aimed at teaching her that if someone does something that makes her uncomfortable she needs to speak up and tell someone.

She shook her head. "I'm a good girl, I do what I'm told. I'm supposed to be polite. Not be a problem to people."

"If you were in a restaurant and they gave you the wrong order, would you tell them?"

"No, I'd eat what they gave me."

"Why?"

"It's nice. It's polite."

She was really scaring me now.

"But you are saying 'no' to me now, you are disagreeing with me."

Suddenly the realization hit her that she was actually speaking her mind. Her whole demeanor changed.

"Sorry," she said as tears sprung to her eyes.

"No, no, don't be sorry, it's good that you spoke up."

"It wasn't polite, I'm sorry, I shouldn't be a problem."

Now I'm kicking myself. I thought I had made a point that would further discussion, not end it.

During the rest of the workshop she never again volunteered for a role play, to assist in any way. She just sat with her hands in her lap and she smiled at me. That pasted on Down Syndrome smile that I understood for the first time (really) had nothing to do with Down Syndrome it had to do with being down trodden. She was entirely 'nice' for the rest of the time we were together.

She left the workshop by coming up to me and apologizing again. "I'm a good girl," she said as she walked away from me.

I never in my life thought that I would have to think about the politics of politeness. That children with disabilities, like this young woman with Down syndrome who grew up in the community, would be taught to be so ... so ... subservient. Her greatest fear was that she'd be a 'problem' to someone. Ummm. Well there are times she needs to be a problem. She needs to be vocal. She needs to disagree. She needs to stand against the wind.

Surely there is a balance between manners and assertion that we need to hit with people with disabilities. Surely parents, staff, teachers recognize that people with disabilities are already, by nature of their disability, vulnerable to preying others. Surely they shouldn't be made more vulnerable by being taught to 'be a good girl' at all times in all circumstances.

It is sheer common sense to teach people with disabilities to be who they are, find their own voice, determine their own boundaries. The world prefers 'cute, smiley, disabled people' in the same way they once preferred women to be 'gentle, docile and subservient.' Assertion is a skill - it needs to be taught, then encouraged, finally honoured.

I shake my head at my failure with her.

I get frustrated at my own inadequacies in situtations like these.

But I comfort myself by thinking, "At least I tried."

And maybe, maybe, one day, she'll think about what I said.

Maybe ... some parent, or teacher, or staff will read this ... and maybe ...

But I just don't know.

Suddenly ... There

Oddly, I'm startled every time I see him. And every time I see him I remember that he's there. Has been there for years. But somehow him being in this place in the world amazes me. He works at Sobey's in Angus, a town near where I live. He is the guy who collects the carts from the driveway or carries groceries out. His William's Syndrome is obvious through both his facial features and his ability to chat. CHAT. C ..... H ..... A ..... T.... ! I love being taken by surprise at his being, his presence. It's like he's suddenly ... there. Suddenly where he belonged all along.

Reading 'The Redbreast' by Jo Nesbo, a murder mystery set in Norway, I was caught by the story. It's no wonder that this book was voted by readers as the best ever Norwegian crime novel. It's smack dab spectacular. But then suddenly, on page 200, she appears. Out of no where, for no particular reason. Harry's sister shows up. She's got Down Syndrome. Then, equally suddenly a beautiful piece of writing follows describing her. To understand the quote you need to know that Harry's partner Ellen is a bird enthusiast and the book is full of bird trivia. Here's how Harry described his family:

"Dad needed to get out. The man who had once been so sociable had become a loner since Mum died eight years ago. And though Sis didn't get far under her own steam, you could often forget that she had Down's syndrome.

A bird dived with glee between the containers. The blue tit can reach a speed of twenty-eight kilometres and hour. Ellen had told him that. A mallard can reach sixty-two kilometres an hour. They both managed equally well. No, Sis wasn't a problem; he was more concerned about his father."

True later in the book more archaic words are used for disability, but still the character of Sis is tremendous. But what's cool, is she's just a character in a book. The book isn't about Down Syndrome, isn't about disability in any way. She's just in the book because she's in the book. It's like I was reading along and she was suddenly ... there. Suddenly where she belonged all along.

It was like that when going to see Notes On a Scandal the other day. Watching the film, getting into the story - akin to crawling into a sewer - on screen appears one of the main character's children. He, like Sis, had Down Syndrome. He's just a kid in a movie. His disability is discussed by Dench's character as a means of telegraphing what kind of person she is ... but nothing more. There are beautiful moments in the film, like watching father and son in front of the television just being together, laughing. No political commentary, just a picture of a family - at home. He's just there because families have kids with Down Syndrome. I was watching a movie and he was suddenly ... there. Suddenly where he belonged all along.

Ain't it nice to be pleasantly surprised? To reach into a box of chocolates and get the one with carmel in it? It is for me.

I'm wondering ... if you have ever just been taken by surprise by coming across someone with a disability in a book, or movie, or real life, that you just didn't expect there. Not like "The Memory Keeper's Daughter" where the story was about the disability ... but just out of the blue, for no reason other than to be there, to be present, to represent the diversity of the world.

If so, I'd like to hear about it.

Please.

Simply Put

After a long drive we stopped in a small town in Oregon just north of the California border. We rose to face another long drive but treated ourselves by stopping at a truckstop for a real breakfast. I wheeled in and we were guided to a table by a hostess - if that's what you call someone who points at a table and says, "Sit there, it's free." The only other table that was occupied was well and truly occupied. There were seven men there. I mean men. Put on dirty clothes in the morning 'cause the job is dusty, men. Burping, farting, slugging, men.

The waitress, if that's what you call someone who serves tea with something floating in it, notices it and says, "At least it's not swimming" warned us to "not listen to the shit that comes from that table." The men, overhearing her, made smart comments back. I'm being generous with by calling a few vulgarities, "smart comments." I ordered breakfast, Joe said, "Ditto." After a few seconds Joe said, "Are you listening to those guys?" I admitted that I was not. He indicated that I should.

Amazing. These guys were like at a blue state support group for men. They were all talking about growing up and being beat by their daddies. One guy said, (direct quote) "It's OK to cry when it pains but not when it's that emotion stuff." They all agreed. Another told a story about beating his brother at a bar. After a few of these stories they moved on to work stuff. Then one of the guys said, "So, how's the kid?" to the guy sitting across from him. They all went silent. If I could have grown ears three times larger, I would have at that moment. Something was up. I knew it.

"Fine." Question answered, they all nodded.

"Good." Satisfied with the answer.

Breakfast arrived. We tucked in and they finished their coffees and were up and out the door. Several of them nodding to me in my chair as they passed.

On our way back to British Columbia two nights later, we stopped at the same hotel. We repeated the routine, not knowing that a snow storm would hit the road between Seattle and Vancouver that day. We should have made tracks then. But we remembered the breakfast. It was good. We pulled into the same table, this time the greeting was different. The hostess remembered us and just said, "Seat yourself, your table's free if you want it." The waitress came and said, "Same again?" We nodded and the order was placed.

The guys were there again. But there was an extra person at the table. A teenaged boy, maybe 16, sat with them. He was, like me, in a wheelchair. He spoke with a cerebral palsy accent. His father sat next to him and helped him with breakfast. He joined in with the conversation. They were back at it reminiscing, this time about sports and bones broken in other pursuits. The kid rolled his eyes at the stories. At one point he spoke, taking longer to get the words out, "Do you know how hard it is to go to school with the smell of bullshit in my nose?" The table exploded with laughter. They all kidded him that BS was all he'd learn in school anyways.

Dad left early, just after we'd got our breakfast, taking his kid to school.

After he left one of the guys said, "Nice kid."

The others, one at a time said, "Sure is."

Gift

I saw him first. The lecture in Kamloops had already begun and I was disappointed not to see them there. A trip to Kamloops just means Tracy-Jo and Tony. In the middle of a story I looked up and saw Tony coming through the door, he's a big man with a big smile and he gave a little wave when our eyes met. Then, magically appearing behind him was Tracy-Jo, a little dynamo with the kind of charisma that public speakers dream of. They took a seat at a table to my right. Frankly, I wanted to stop the presentation and just say, "Hi."

Years ago, Gail Saunders the ED of the Kamloops Society for Community Living, asked me to come and work with some self advocates and talk about - oddly enough 'community living'. In meeting with the self advocates it became apparent that while many were living successful lives in the community many were meeting with less than welcome attitudes. We talked about creating a new awareness of disability and what it meant. An idea formed about working with the local cable provider to do a series of 'spots' that featured individuals with disabilities who were actively making their way in the community, actively making the community better. Both Tony and Tracy-Jo came forward wanting to participate.

In working with them and getting to know them as individuals and as a couple, I was taken with them. They seemed to be the perfect couple, yin and yang and all that stuff. So, coming to Kamloops I had hoped meant seeing Tracy-Jo and Tony. Now they were there in the workshop. At the breaks we managed to catch up. Boy have times changed. Ten years ago if you ran into someone with a disability who you hadn't seen for a few years, they really had nothing much new to say. Their lives never changed and one day was pretty much the same as the next.

You know when you get a Christmas letter from someone who's life seems so much richer, so much fuller, so much 'funner' than yours. I kind of felt like that when talking to these guys. What had Tony been up too? "Not much, oh did I tell you that I climbed Mount Kilimanjaro this year?" What had Tracy-Jo been up to? "You know same old same old, oh and did I mention that I won a huge National Community Hero award from Safeway, where I work?" Not to say that either Tony or Tracy-Jo were bragging, they were just talking, sharing their lives.

When we left they gave us a little gift to take with us. It was a sealed envelope that was clearly packed full of 'stuff'. On the top of the envelope was a brief message written in black marker. I put the envelope carefully away and then Joe and I made our way to Salmon Arm. The trip took forever. The weather had gone bad and a huge accident blocked the highway. We sat for hours. Finally making it to the hotel and ordering in dinner, I remembered the envelope and pulled it out to open.

Out fell newspaper clippings that documented little bits of Tracy-Jo's and Tony's life. They live a public life, knowing that they have to demonstrate - constantly - that disability does not mean inadequacy. One of the pictures captured me for the longest time. It was a picture of Tony and Tracy-Jo embracing. Holding on to each other.

Freedom was a long time coming for people with disabilities. But when it came, it came big. Tony and Tracy-Jo live life big and small.

Gosh it was good to see them.

Unsaid Words

She sat at the back of the room in Princeton. Next to her was a friend who was able to interpret her meaning through the words that she wrote in a book and the invisible language that they had developed between the two of them. Described, someone might use the term 'non-verbal'. But in real life, in the real world she was able to communicate quite clearly wants and desires, further she was able to communicate deeper aspects of her personality. Everytime she was understood the trill of being 'heard' registered in her body and radiated through her face.

The next day in Oliver a man, a skinny little guy in a track suit with balding gray hair and a manic manner of movement, reacted emotionally to the workshop. Stories of teasing bothered him, descriptions of how people with disability were treated disturbed him. He came up and cried, a little - not as a means of grieving but as a means of saying 'this makes me sad' - then he indicated through rudimentary sign a gesture that this had happened since his childhood. After about 5 minutes I realized I had been deep in conversation with someone 'non-verbal.'

I hate the term 'non-verbal' because it's archaic, meaningless. I have met many who do not speak and none who do not communicate. A woman in an institution guided her staff in the meeting of her needs by the light in her eyes. A man in a group home lets his likes and dislikes, his ups and downs, clearly be known by the movement of his shoulders. A little boy told his mom that he was hurt at school by his behaviour and manner. All of these were 'non-verbal'.

Anyone who works with those who do not speak know that the word 'non-verbal' used to mean 'non-communicative' is just a falsehood. The more you know someone the more you know what makes them happy, what makes them sad, what foods they like, what colours they prefer. It' intellectual laziness to suggest that a human being can be in your company for more than a few hours without 'saying' something. Good heaven's baby's communicate well without a word - but they communicate well because parents really want to listen - really want to watch for meaning - really want to be in relationship with their child.

It scares me when justification for harsh or barbaric treatment is suggested and the explanation is that the person is 'non-verbal.' This is a means of tricking those who don't know people with disabilities and their myriad strategies for communicating into believing that consultation or consideration can't be done with someone 'non-verbal.' It's a lie.

In all the discussion about Ashley's treatment she is only 'non-verbal' - umm that's the first warning signal that something is wrong here. I saw a picture of her. She was smiling. That picture alone said that she could communicate happiness. That picture alone gave the lie to the idea of 'non-verbal' as 'non-communicative.'

Perhaps it would be better if we described Ashley using the word 'victim' to replace the word 'non-verbal' and perhaps we'll understand the situation better.

Anyone who knows someone 'non-verbal' who communicates well, please respond with your story to this blog. Let's make the point that one can only talk if another chooses to listen.

Simple Solutions

Just a quick post today. We sat on a highway for two hours as a huge accident was cleared from the highway. Snow had fallen all day and we were tense before we left on the drive from Kamloops to Salmon Arm - and sure enough we sat as emergency vehicles flew by. We could see lights flashing in the distance. The radio told us a collision had blocked traffic both ways. By the time we drove by it was dark, the road was icy and snow was beginning to fall again. It took four hours to drive less than 100k.

So, I'm tired.

But the call of the computer in the hotel lobby is strong.

So let me tell you of a brief conversation of a conversation I had with Gary in Vernon the other day. He was telling me of the closure of a group home and of the move of a young man in to less traditional care. This guy had been a behaviour problem for ten years. He had the uncanny ability to strike the walls between the struts and do remarkable damage.

During the move this fellows family and support workers sat down to talk. To do an annual plan. They decided to rid themselves of the 'he will go to the library' type of goals. After much puzzling they came up with a goal. Simply stated they hoped it would radically change what needed to be radically changed.

He will be happy and live harmoniously with himself.

Then they set out to make reach this goal. They set out to find what made him happy. What gave him peace. That was their only goal.

He's happy.

He lives in harmony.

Seek and ye shall find.

They sought, he's been found.

When Panties Fall 2

Several days ago I wrote a post about the guys who had gone to a strip club in British Columbia and the ensuing national upset about their choice of Friday night entertainment. If you remember, their trip to the club ended up in the national papers as well as on national talk shows. Well, I met one of those guys in Oliver and I talked with staff from the agency that had supported them (by providing transportation).

He was an interesting guy to talk to, he was clearly angry about what had happened, angry that his private life had become public. As far as he was concerned only two things mattered, first it was nobodies business, second, he had the same rights as everyone else. He was clear on these two points. I asked him if it hurt to have his choices discussed simply because he had a disability, his voice faltered and he said simply, "Yes."

I realized that for an instant the media, the talk shows, the country stood up and called him, "Retard". Those who were upset about him going to the club were clearly acting out of prejudice and ignorance - it's like calling him a name, it's like stereotyping him as something less because he's something more, it's like a slap in the face. Do you realize that there are probably people out there who wish they could surgically remove his right to choice. His right to adulthood. Thank heavens he escaped the tyranny of 'those who know better'.

But he was still hurt by all of this. Yes, actions have consequences.

All that happened here this guy went out with a few friends for a beer to a strip joint. How does that make him different than thousands of others doing the same thing across the country - maybe for him it was more than a beer - maybe it was a statement of independance and adulthood. But maybe that's the problem, he was just a wee bit too much like you and I, and maybe people wanted to slap down an uppity disabled guy who thought he could make the same choices as we do.

The ED of the agency and one of the managers involved were resolute. I was so pleased. Often a media attack like that leaves us scurrying like rats for the boat - but not here. There was a realization that all they were doing was their job, that others had the problem. I love people in human services that have the backbone to do what's right. Let others have opinions, let people with disabilities have rights.

There are costs to our principles and sometimes we have to stand up and be counted. To indicate clearly to people in care 'we are on your side' ... this agency did. The guy with a disability knew it.

Cool.

Oliver

She sat in the front row, attentive, nodding, occasionally crying as she identified with my words. Her walker in front of her, her friends beside her, her eyes never left mine. I was giving a talk in Oliver and the audience was a real mix, family, staff, self advocates, school personelle. The topic was supporting people with disabilities who have been teased or bullied. When I get to the part where I want to talk about how we, as carers should respond, her had shot up, "I get teased all the time, people call me names, stick their tongue out at me, bully me, I try to do things to stop it but they don't stop. What should I do?" There was such urgency in her question. I asked her permission to first talk about what staff and parents should do when they are told that someone is being bullied, she smiled and said that she would be willing to wait as long as I got back to her question.

It was a wonderful moment for me as a speaker. Often when I talk about teasing, an audience of parents or staff collectively decide that I'm talking about somewhere else, somewhere 'not here'. She took that opportunity away from them. She let them know that the Oliver that she lived in included mean people who did mean things and they did these mean things on purpose to someone so gentle.

At length I talked about how we should never say, "Just ignore it." I went through the 7 things we should do. I could see the audience take this all so seriously. Perhaps more seriously than any audience I'd had before. Because of her, Donna, she'd gone public with the truth. She gave me the gift of her honesty. She gave them the gift of truth.

But then I needed to talk to her. I told her that I wished I could give her a community of people who were kind and caring but that I could not. I told her that one day we would have welcoming communities but these communities would not be fashioned by my hands, by the hands of parents or by the hands of agency staff. I explained to her that every time she went out, every time that she faced hateful people with hateful comments, she was creating community. She was cutting a path. She was Rosa Parks. She was our hero.

I told her that three months from now a little girl would be borne with a disability in Oliver. That that little girl would have an easier time of it because she, Donna, had been here. Had courageously lived her life in the community. I told Donna that her suffering had purpose. I told her that her courage would be rewarded and that people with disabilities would grow up in an Oliver that had experienced Donna's courage to live freely, live independantly and live with power.

Donna understood. I could see her understand, maybe for the first time, that she was a hero. That she was a pioneer. That she was doing something good for someone that needed her. That she was parenting a new generation of people with disabilities. Tears came to her eyes, but they did not fall. Donna would not cry. She was too proud for tears.

When Donna stood up you could see new determination in her shoulders and new purpose in her walk.

I am a fortunate man.

Because today I met one of the women who has created and is creating community in Oliver.

Today, I met Donna.

Hope

We drove down the mountain to Osoyoos where we will stay the night. In the dark it was easy to see the settlement, the lights arranged in a North American criss cross. It was beautiful. Because we were high, looking down on the town, it seemed like we were seeing it from space. The distance, though far, was close enough to communicate to us that a there was a place amongst those lights for us. A place to rest and regroup. It was a beautiful feeling.

Yesterday I did a session in the morning for self advocates on rights. It was a great group and we were having fun together. The discussion at points serious and points hysterical. At morning break, I sat behind the presenter desk and just chatted with those around me. What a lovely group. As I almost always do in these situations I asked them to tell me about their dreams. One young couple talked about their dream of marriage, one young woman talked about wanting a job, another talked about wanting to take another vacation trip like she had the year before. It was typical chatter.

But something made this chatter extraordinary.

I remember back in the old days, years ago, people with disabilities would have talked about relationships, employment and travel. It would have been a pipe dream. Nice, but never going to happen. Back in those days, we didn't have dreams - we had goals for people with disabilities. Goals with so many steps that 'real life' would occur long after death. Back in those days we thought in terms of plans not in terms of progress. We were looking down at the task while people with disabilities always, always looked at the horizon.

Something has happened over the years. Either we've wised up, or more likely we started to listen up. We began to see the point of service provision as actually providing service. Suddenly, then. The dreams got closer. The dreams became, finally, possible. You can see them in the distance. Almost there. Just over there.

True, on this blog I am a little too often negative, a little too often critical.

But today, talking to people who's dreams were out of reach only because they haven't stretched. I realized that we have travelled far down the road. We have yet a distance to go, but we have travelled far.

I saw my destination tonight from high on the mountain and suddenly 15 minutes later, I arrived.

Hope stirs in my chest because everyone of those I talked to today, is also only minutes from arriving.

Communion

I'm in Princeton after a harrowing trip over the Rockies. We hit snow last week and driving has been ... challenging ... for most of our time here on the coast. But now, after a nice weekend, I'm getting ready to start the BC portion of the lecture trip. Tomorrow I'm doing a training on Rights for the self-advocates here and in the afternoon I'm doing a training for staff and family. Even though I've done these kinds of things a lot, I still prepare - both by going over my notes and by getting in the right frame of mind.

It's perfect that I'm starting with the self advocate group, it's nice to be reminded why I do what I do by spending time with people that I do it for. I remember, years ago, when I consulted for Behaviour Management in their offices in Oak Ridges, I would start the day after going to Daybreak, the L'Arche community just south of there, for the morning service. I'd sit with others, some with disabilities, some without, and we'd pray together.

One Sunday, when the service had been run by a wonderful woman - I don't know what faith she represented, I went up to take communion. I recieved my bread from a woman with Down Syndrome. I was fed by her. I saw her hands as they slowly passed the bread to me, I saw her eyes as she looked at me with prayer in her eyes.

It was a truly remarkable moment. Two children of God in the act of worship - together, equal, family.

It's important for me to always remember why I'm here, what I'm doing. Like pushing the "refresh" button on the computer, it's nice to have those moments when the politics, the interpersonal ca-ca, the mindnumbing paperwork seem to get in the way.

It's about communion and community. It's about a shared visioin.

I look forward to having that vision affirmed today.

Checkers

Have you ever played checkers with someone who's blind? I have. Paul and I set up the board and we began. I hadn't played in years. He was good. It was my last meeting with him and I had travelled hours to his new group home. This visit was a final follow up. After meeting with the staff, I met with him. I remembered from earlier discussions that he liked checkers so I invited him to play. After he got over the shock that I played the game, he got the board, set it up and we began to play.

I had met with Paul weekly for just over a year. Session after session we discussed his life, his fears, his direction. That along with behavioural programming and parent training had helped, he was doing better. Not well, but better.

Now he had moved to find a new start. A new school. A new agency. A new set of staff. He needed this move. His reputation locally was epic. While we played checkers that day, I could see Paul relax and suddenly the chatter - easy and fun, had become confidential - soft and serious. He told me that he wanted to have children one day and that he wanted all his children to be "blind and slow just like me". He said that the worst thing for him was the fact that his parents weren't blind, or slow and couldn't teach him how to get by, to deal with people, to cope with being different. They couldn't or wouldn't think of him as anything other than normal. They wouldn't hear of 'it' - his disability.

Years later I worked on a radio documentary called, "Life, Death and Disability" for CBC radio and in it I interviewed leaders of the disability community across Canada and the United States. To a one each of these leaders credited their paretns for their self esteem. Example after example of parents who taught their child to accept their disability by parental acceptance of disability. They taught self respect by modelling respect for the child's self. Self esteem for esteeming the child as a disabled child. Self worth by acknowledging worth, not in spite of the disability but because of it. This to me, is the basis of good parenting, good support.

Paul's parents couldn't, wouldn't accept Paul's disability. They lived in denial and wanted Paul to believe "You are just like everyone else." Paul knew that for the lie it was. He knew that the basis for the lie was shame. He wanted more from his parents. He wanted what every kid wants.

"Help me live in my world as me. The real world as the real me. Accept me for me and so will I. Respect the journey I am on, walk a while with me and I will find my way. Love me for me and I will then have the capacity to love you, for you."

Ashley's Treatment

I saw something disturbing today. I saw a young man, maybe twenty-two, in a bookstore with what looked to be his father. I figured the connection because those two noses had to have grown from the same patch of soil. They walked slowly, stopping now and then to look at something. The young man was significantly, severely, profoundly disabled. He was in a wheelchair, his body formed odd angles. His beard, neatly trimmed. His clothing, fashionable. His father, attentive.

There was was pure simplicity of the time they spent together. This was a young man who would take time to care for, who would need much, who some would call 'burdon'. But the burdon must have been light because his father seemed to have no difficulty in pushing the chair, and no difficulty finding words to chat with his son about what they saw together. And the son gave back. He glanced at his father with pure affection and love. He smiled at his father's jokes. He, once, reached out and held his Dad's hand. This was a relationship in the truest sense, it was reciprocal, both meeting the other's needs.

This man and his father, this man and his family will never be the focus of media. They will never be noticed by history. They will never be discussed in a public forum. They will simply be a family.

Yet they live here in Vancouver merely miles away from Seattle where a young woman, Ashley, was surgically butchered by her family to ease their care of her. Her insides were ripped out so that menstruation wouldn't be a bother, her breast buds and milk glands removed - to protect her from abuse (an irony if ever there was one), then she was placed on huge dosages of hormones to fuse her bones and make it such that she will not grow, not become too heavy, to difficult to care.

She is surgically altered by a family who claims love - while another family trims the beard of their son. It disturbs me that one family becomes the subject of discussion while another family goes quiet into the world, goes gently into love, goes well into care.

It disturbs me that I hear nothing about child protection agencies - isn't this their job? I hear nothing about advocacy groups taking legal action. If Ashley had been a Yorkshire Terrier, the humane society would have reacted with passion and anger. Why isn't it wrong to do Nazi experiments on children? Especially when other families deomonstrate, daily that care is possilbe. That growth isn't a burden. That love may mean the extra bother of trimming a beard!!

I sat in my wheelchair and watched the two of them leave Chapters, go out onto Granville and then go out of my vision.

I wanted to scream.

I wanted to make noise.

I want to do something.

Write someone.

Complain somewhere.

Demonstrate loudly.

Protest at an embassy.

Someone help me. What do we do? How do we respond?

Where do we put our anger?

What do we do with helplessness?

Does anyone know?

If there is any kind of organized resistance or protest to "Ashley's Treatment" as it is called, please please let me know.

Boats

Joe had just parked me at a table and was off getting me a green tea. A young woman immediately stopped by me and asked, "Are you Dave Hingsburger?" I said that I was. She sat down and said, "I don't want to take up a lot of your time." I indicated that as I was on the island ferry, that I had time. She said that she had heard me speak once, but that she was a blog-fan. I was immediately thrilled. I've only been blogging a short time and it was cool to think of having a blog 'fan'.

She said that she had read my post from yesterday and there was a line in it that she really liked. "The part about the boy looking at the boat - the part that said that what was going on in his head had nothing to do with Down Syndrome, it just had to do with him being a boy looking at a boat." Her excitement was catching. I knew she had a point so I just let her talk.

"That's exactly what I've been trying to tell people. My little guy Walter, my Dad's name she threw in, he's 10 years old. And most of the time he's just 10 years old, he's just a boy, most of the time Down Syndrome has nothing to do with it. Nothing to do with how I parent him or how I love him. But whenever I talk about him to my friends or my family or, God Forbid, the school - that's all he is. All he is to everyone is DOWN SYNDROME. It's like they aren't interested in the part of him that's Walt, they're only interested in the part that's Downs."

"Well ..." I tried but the train had left the station and had not reached it's desitination. Joe had returned with the green tea and she nodded at him politely but kept talking.

"I don't want you to think that I'm in denial. I know that Walter has problems related to Down Syndrome. God, I'm the one who had to toilet train him and teach him to wash and bathe. I know that things don't come easily to him. I see him struggle. BUT THAT'S ONLY A SMALL PART OF THE DAY. It isn't every minute."

"That's why I liked that part where you said, he was just a boy looking at a boat. THAT'S WALTER, I screamed. And then, oh my God, there you are on the boat. It's like I just read that only a few minutes ago and you are here on the boat. So, can I ask you if I can give that to the teacher. I want his teacher to understand that he should just shut up about Walter having Downs and let Walter be Walter. I want the teacher to just take a bit of time to meet the huge part of Walter that doesn't have Downs, that is just being a 10 year old boy. You know what Walter wants to be?" She didn't take a breath to let me guess, but I would have got it right, "A POLICEMAN for God's sake. He wants to be a policeman. Because he's a 10 YEARS OLD BOY. Why can't the teacher, the social worker, God, why can't MY MOTHER, understand that Walter is a 10 year old boy?"

She stood up, I'd said maybe two words to her, "Thank you for writing that about that boy. It made me feel like maybe I wasn't insane. That maybe I was on the right track. God bless you. I know you're busy and I shouldn't bother you like that, but thanks."

And she was off.

I didn't get to answer her. I didn't even get her name. "Yes, you can give anything on my blog to anyone."

We had Chinese food tonight with my sister-in-law and two of her kids. We laughed until our sides hurt. I sat in a wheelchair but I was just Dave. I'm my disability, but I'm also more than my disability. I'm mostly "Just Dave" and I like it when I just plain forget anything but being a 54 year old guy who likes to talk, eat and laugh.

Most of the time I'm a boy looking at a boat.

And so are you.

Fist

"Turn here, yeah, right here," I was animated and pointed quickly to the turn I wanted Joe to make.

"Are you sure this time," he asked and I was afraid to tell him that I really wasn't.

Again, I'd got it wrong. How could that be. The place is so clear in my memory. My first real job working with people with disabilities was in a smallish institution called Glendale just outside of Victoria. I had driven there a hundred times, now I couldn't find the place. Maybe it's because the area has changed so much, maybe it was because of the dark, maybe because we were tired.

"Why do you want to go there anyways," Joe asked. I explained to him that my whole career started there. My real education in the real world started there. I just wanted to see it again. As we hunted in the dark I remembered so many of the people who I met there. I remember precious few of the staff, Antoinette, Win, Debbie ... that's about it. But I really remember the guys that I worked with.

My memories have changed as I have changed. As I came to understand the instution as a place of captivity and abandonment - my sense of what I did there changed. My sense of who those men were changed. But I still remember them fondly. They were survivors, they lived their life waiting for what we couldn't even imagine back then - community. When I got there they had all been 'in' for years. They had adopted the institution shuffle, they wore institution fashion, they behaved in ways suitable to where they were and what was expected of them. None had an air of resignation about them, all woke with hope and went to bed with optimism. They were amazing.

I remember the Down Syndrome World Congress that I had the honour of keynoting last year. I flew in on the last flight and woke up frightened. This was a big deal, a big lecture, and my nerves let me know it. Joe and I arrived early and set up some books on a table in the exhibit hall and then wandered around a bit. We stopped and looked out the window at a huge cruise ship docked right by the convention center.

I heard a slight sound, a sound that could have been made by Cindy Lou Who, and turned to see a bright eyed little boy. He stood clutching on his mothers leg as she stood chatting animatedly with another woman. He had made the sound, I think, because we had blocked his view of the big ship. I tapped Joe on the shoulder and he immediately noticed the boy, smiled, and we wordlessly stepped out of his way.

Seeing the boat again his eyes grew wide and his smile wider. I don't know what was happening in that little boy mind - but whatever it was, it had nothing to do with Down Syndrome. It had to do with being a little boy looking at a big boat. I waved at him and he glanced at me and raised a little fist. He was to young to wave and to young to understood that he had given, by accident not design, the symbol of power, pride and resistance - a raised fist.

As we drove through the night looking for the institution, I asked Joe if he remembered the little boy and the boat at the conference in Vancouver. He said that he did. He asked why I had brought him up. "I was just thinking," I said, "about him and his life. He will be so different than those we caged in Glendale. He just had to reach out and Mom was there. Remember how tightly he held her leg with one little arm? He won't spend a lifetime walking down hallways looking for someone who's not there. I remember his mom reaching down and absently stroking his hair. A loving touch. His life will be so different."

Seconds later, I gave up. "Let's go home, I don't think we're going to find the institution."

Joe pulled into a driveway and turned around.

"About that little boy," Joe said and I turned to him, "I hope it's like this for him. I hope that if anyone goes looking for an institution for him - they won't find one. Because they'll all be gone."

"Yeah," I said, "I don't think I want to find it anymore myself."

I remembered that little fist raised.

Power, pride, resistance. That's what he's going to need.

Raise your fist little man, then look behind, you no longer stand alone.

Poo

I didn't want to do it. I'd travelled miles by plane and hours by car. In less than twenty minutes I was expected to arrive at the conference site and nod, smile and then begin a lecture I'd given one too many times. Sure it's important. Sure it's an honour to be there. I understand all that. But tell me that you don't get up every now and then and want to say, "To hell with it, I'm knocking off."

I didn't call in sick, of course, I showed up on time like I always do. But I groused about having to go to work and then a voice appeared in my head, "That's the way life goes, hey?"

I smiled but didn't know why.

During the break today a woman came up to me and we were talking. She was telling me about having been in an accident and ended up in a cast that held up her left arm and covered her torso. Her story was funny and I responded by saying, "That's the way life goes, hey?"

I laughed and she looked at me oddly not getting the joke. But honestly, neither did I.

Throughout the day that phrase kept coming back to me. Over and over again like a snatch of a song on the radio runs round and round your head. But each time I thought it, it seemed wiser and wiser.

"That's the way life goes, hey?"

You can use that sentence in almost any circumstance.

I lost a winning lottery ticket. "That's the way life goes, hey?"

My husband ran away with my best friend's boyfriend. "That's the way life goes, hey?"

The pizza arrived cold. "That's the way life goes, hey?"

It's all purpose. And it's true.

Finally I remembered. Jean-Anne used to say that all the time. She was a woman with an intellectual disability who attended a 'pre-vocational' center. No matter what happened she had, "That's the way life goes, hey?" at the ready. When one staff was upset at the break up of a relationship ... when another heard her father had died ... when another didn't get accepted to university ... Jean-Anne was there with her, "That's the way life goes, hey?"

She never offered pity, or comfort or anything but a statement of the obvious. If you are going to live, things are going to happen. Good things, bad things, cause that's the way life goes, hey?

But what made me smile was remembering Jean-Anne one summer day. We would leave the pre-vocational center and walk to a clump of trees at the back of the building. It was cooler there and we could all just relax. (Relaxing being a very important vocational skill.) Jean-Anne was wearing flip flops and was talking with one of the others as we walked through the yard. She stepped in a pie of dog poo and stopped, looked at the mess and let out a scream of disgust.

I got there first with the line, "That's the way life goes, hey?"

Jean-Anne looked up and said, "Yeah, but does it have to?"

Amen, sister, I got that today.