Joe

I was pretty proud of Joe today.

On our way down to work Joe was talking about getting the car washed by a disabled guy who likes to make a few extra dollars. I didn't know that Joe had set an appointment to have the car washed, didn't even realize the car needed washing. I'm the kind of guy who is surprised that carpets have to be vacuumed. What does 'dusting' mean? So, anyways I nod and appear interested (the two things you need to learn to do to stay in a successful relationship).

The problem, as Joe explained endlessly, was that the time he booked no longer worked and he needed to change the time. The decision was to find the guy and change the appointment time. Scintillating conversation and problem solving, no? Well, the best laid plans ... the guy wasn't around so Joe left a message for him with the new time.

He did all this with a sense of real urgency.

Well the guy pops into my office to say the new time isn't good for him and rebooked for next week. I called Joe. He was concerned, "That was OK with him?"

"Yeah, it was."

"Good," he said with a voice that told me he was relieved.

"Why is this such a big deal."

"People promise things all the time, then they don't keep them, or don't show up. You know the guys who stand outside the beer store begging for change, everyone says 'I'll give you what change I have on the way out and then they rush away not looking up? Or you know the guys who get their car squeegied and then laugh while driving away? Poor people, diabled people, children, all have people promise them things ... to get them to shut up, or to get out of an uncomfortable situation. You know people do that right?"

"Right."

"I don't. Because equality is something you do as much as it is something you believe."

Right.

I knew that.

On The Elevator

We got on the elevator up to the office and heard it. Vita has a day programme on the main floor and the offices are just above. The elevator door creaked to a close and the rogue sounds of laughter run amok burst through the closing door and wrapped itself around us. I did what I never do on that elevator, I stopped the door from closing and just stood there and listened. Savoured the sound as it tickled the palette of my ears - sound that tastes good is rare and needs to be enjoyed.

The laughter began slow, low, like it had a Southern drawl. Then it built and built, one laugh giving encouragment to the next. Finally a full throated laugh filled the elevator with pure, unadulterated mirth. We, Joe and I, carrying foodstuffs in for a meeting later that day, began to giggle. We had no idea what had caused the laughter or who was laughing, but it didn't matter the laugh we heard tickled the bottom of our feet.

By the time we reached the second floor we too were laughing. I'm smiling here as I write this. It was so good to hear that kind of laughter. Unrestrained, gutbusting, trumpets of Jerhico laughing.

Not the restrained giggle of polite company.

Not the haughty smile of the 'better thans'.

Not the forced frivolity of a drunken partier.

Real, genuine, joy.

And I realized, I don't laugh much anymore. I find much funny. But sad funny, awful funny, I can't believe it funny. Joyous funny has eluded me these last few months, nay, years.

I don't know how it got left behind. I know I was berated for my laughter as a child ... too loud ... too brazen ... too noticable. I worked at bringing it down, bringing under control, finally ending it altogether and replacing it for the slow, quiet laugh that I have now. It's acceptable, it fits in, but it's not the one I was borne with.

I notice this in others too, I notice how when someone laughs too loud at something funny at a movie that everyone glances at each other ... like the laugh rule was broken. But the laugh I heard this morning was the real deal. It was the 'may interfere with aircraft frequency' kind of laugh. It was a laugh that could have parted the Red Sea. A hardy Hardy-Har-Har.

First time, in my adult life, I heard that laugh was when working in a large institution. A woman with a disability who had been given the job of carting food down a corridor had somehow slipped. There was scrambled egg everywhere. Everytime she tried to clean it up, she slipped down. It was in her hair, her clothing and all over the walls. We all stood, helpless to help her, outside the radius of egg mess. Finally when she tried to stand up holding onto the cart, she lost balance and went down again, this time bringing everything down with her.

She gave up.

She laid back and laughed.

A huge laugh. A from the fingertips, from the toes, laugh. Laughter filled the institution hallways, it coloured the air with humour, it was loud enough to crack faces, it was warm enough to melt frost. Then we all laughed. Pale imitations of the real thing, but we laughed. We who lived free laughed our restrained appropriate laughs while she who lived abandoned and caged - laughed large. At least she was left with an uncaged laugh.

I want to laugh more.

I want to have a pull a muscle laugh.

I want my laugh back.

But if I can't have that ... I'll settle for hearing that laugh, at least a few more times, in my life.

Pink Shirts

Did you catch the story?

I didn't, my friend Lori from BC sent it to me. She said that she was cheering when she heard the kids interviewed on CBC radio. Her note to me said that she didn't forward many articles but that she knew that I'd like this one. I'm thrilled that she did.

Somewhere in Nova Scotia a new kid started at at new school. Anyone who ever switched schools knows how that feels. The young man came to his new school wearing a pink shirt. The school bullies set upon him and called him all sorts of names, making inferences about his sexuality, in doing so bullying him and terrifying every gay kid in the school.

Two teen boys thought this was ridiculous and went out and bought 75 pink coloured shirts and distributed them to all their friends and all the kids who wanted to stand up to the bullies. When the new kid arrived at school a couple days later he saw a sea of pink, all kids who didn't know him showed him that he wasn't alone, that there were those who would stand with him and against the bullies. They even saved a tee shirt for him to wear with them. Along with the shirts they brought pink material to make arm bands and head bands. In all, over half the kids at a school of over 800 wore pink that day as a statement against bullying. You can read the whole story by going to http://www.thechronicleherald.ca/Search/858884.html

A great story. The article in the paper has a picture of these two teen heros wearing pink shirts and grinning into the camera.

The article doesn't say but I believe that every kid in that school is safer from bullies right now. Fat kids. Frecked kids. Disabled kids. Gay kids. All of them. Bullies don't expect others to care. They depend upon the apathy of others to get away with what they do. All that it takes for evil to succeed is that good people do nothing. This time, the good people did something. This time, the bullies lost. This time, so maybe next time too. All it takes for evil to succeed ... wait ...

Evil lost in Nova Scotia.

I for one am cheering.

Label Me!

"Label jars not people."

This was said to me recently by someone who has a bumper sticker approach to life.

"Focus on the ability not the disability."

This criticism was leveled at me by someone who thought that I took disability too importantly.

I'm afraid I'm out of step with where our philosophy in service to people with disabilities has taken us. Partly this is because I now have a disability, but partly this has always bothered me. I don't think that 'labeling' people is all that awful. I think the issue is how we value the difference that is labeled. I think that putting difference on a heirarchy is the problem. For me, I don't know how we could have a disability community without the concept, the reality of this thing called disability. I don't think the gay movement even got started until the gay community got over it's own fear of difference ... the 'we're all the same as you' stage. Similarily the women's movement came of age when it began valuing the feminine difference rather than proclaiming masculine equivilancy.

"Don't call me disabled."

Said to me by a self advocate with an intellectual disability who refuses to identify with his disability and his community. His fear of his own difference is his major handicap. He lives a life on the borders on normalicy and even though he has a key to open the door to his own community, he refuses to use it. Doesn't ever, ever, ever want to be seen with someone else with a disability. This to me is profoundly sad. A waste of time, a waste of a life.

Go ahead and sew the label 'disabled' on my forehead. You might as well, the wheelchair gives it away anyways. Don't try to stop me from accessing my disability community, my trolling through the disability blogs, my chatting with other crips when I'm out and about, my reading books and stories about those with disabilities. It's my community, it's my patch of grass, I'm not going to give it up or give it over.

Sure I want access to the whole world, but I want access to my own as well. I'm not interested in the 'I'm not crippled cripples' I find their lack of courage to identify boring and sad. I have always liked people who are in your face. Who are exactly who they are. If you are going to be Christian BE Christian ... not a wishy washy apologist. If you are going to be a philatalist wear stamp ear rings. If you are going to be a Trekkie, learn Klingon.

So, I'm thankful for the label 'disabled', it's given me a movement, it's given me a community and it's given me purpose. Should others try to use that word, that 'label' to take things away, that's where the fight begins ... not with the word but with greedy bigots who want to stuff my rights into their bag. I refuse to bow to pressure to deny my disability in order to prop up the idea that disability is something to be denied. Forget it, I'm too old to spend energy on self delusion for the sake of others.

Disabled ... count me in ... I'm one.

Beautiful Joe

Driving into Meaford we are welcomed by a sign that announced that "Beautiful Joe" hailed from here. After joking with Joe that they knew he was coming, we both wondered who "Beautiful Joe" had been. We saw the sign indicating where to turn to visit the "Beautiful Joe" memorial park but ignored it an continued on our journey to Wiarton where I was to present for a couple days last week, a couple days this.

Once into the hotel room, I hooked up the computer and looked up "Beautiful Joe" and discovered that Joe had been a dog that lived in Meaford in the late 1800's. He had belonged to a deranged and abusive man who over time had mutilated and disfigured the dog. Hacking off ears and tail, treating the dog as property to be abused at will, Joe barely survived. He was rescued by a caring family and once brought back to health he brought love in abundance to his new caretakers.

Beautiful Joe's story was discovered by a relative visiting the family in Meaford and then written into book form, the story was relocated to an American location in order to compete in a Humane Society competion and thereby win publication. The book, won, was published and has sold millions and millions of copies. It is still in print over a century later.

I had never heard of the story but I immediately was moved. Eric, our little dog, was an abused dog who rescued us. I choked with emotion at Joe's rescue and foamed in anger at his past abuse. On our way back this week we went to the memorial park and found a statue there in Beautiful Joe's honour. The artist captured Joe lying down with his head raised looking into the distance. His ears, mutilated, his spirit unwounded.

I didn't expect to be so moved. But then I remembered only weeks ago doing a consultation with a woman with a disability who had lived a life of rape and violence. I remembered a young boy with intellectual disability, eyes burned out with cigarettes. I remembered measuring a bruise and documenting it onto a report.

Joe, like all these, was given to care to others.

Joe, like all these, was vulnerable to the temper of another.

Joe, like all these, felt all that was done.

We, who are in the position of care providing are given such an incredible trust. Lives are placed in our hands. Skin that can be cut. Bones that can be broken. Souls that can be destroyed. It seems sometimes that we become casual with that trust. It's all to easy to forget the strength of our grip, the tone of our voice, the harshness of our demands.

I got out of my wheelchair to make my way, with assistance, to the statue. I ran my hand gently over that dogs head. I touched at his ears. Felt the jagged remains. And was reminded, again, of my responsibility. Reminded again of the depth of human depravity. Of the creativity of cruelty.
I prayed that Joe had forgiven us, we humans, for what we had done to him.

I prayed that we humans would find in Joe a reminder of what it means to survive.

Test Run

I hadn't heard from her in awhile. We had met several years ago when I was doing a parent training seminar on abuse prevention in Barrie. She sat down with me during one of the breaks and chatted about her son who was then 6 years old. Her greatest fear, she told me, was that her son would be victimized. I could see the strain on her face but I could also see the determination in her eyes. She would do what she could. When she left the seminar she handed me a note. I was touched so I've kept it all these years.

"Thank you so much for teaching us how to better parent our children. I always thought that it was my job to protect Jeff, but now I see that it is my job to teach him how to protect himself. In that message alone, you have given me such insight. Thank you for what you do."

Reading that part of the note in the car later, I thought, "That's why I do this."

About six months later when I was doing a consultation day for the Sexuality Clinic in Barrie, I meet her again, this time with her son Jeff. He was a strapping, handsome boy with Down Syndrome. By the time he'd got to me he'd hugged the secretary, the director, the maintenance guy, the othe people in the waiting room. Mom was frustrated and as much as she tried to stop him, people would say, "Oh, it's OK" and instantly she was defeated.

We talked she, he and I. At one point I suggested that Jeff go to the kitchen and get a pop from the fridge and called in the secretary to take help him find the way. Then I gave Mom some ideas for how to deal with this situation. We practiced the strategies. She was teary-eyed when she left, "I want him to be safe but I don't want him to lose his joy, his trust."

Over the next several years, Mom would call me maybe once, maybe twice, to ask for advice. She was always full of apologies for calling, I always assured her, truthfully, that I always enjoyed her contact. Then, we met for lunch. She was making progress with Jeff, she didn't know for sure if he was developing boundaries to please her or if he was really understanding the purpose of distance and permission. Either way, progress was being made. I told her to call me when she thought that he'd got it and we'd test him out and see how he does.

She called yesterday. It was the perfect day. We had planned to go to the city, but those plans fell through. We always go to a movie on the weekend but nothing new openned of interest to us and we'd seen everything else. So we had time on our hands. We chatted for a second first and she said that she thought he'd be ready. So, I cupped the phone and asked Joe, if he felt up to playing a pedophile stalker today. "Do I have to wear a costume," was his answer. He's used to doing odd things for my job.

When she asked me when we should do this, I said, "How's about now."

We agreed to meet at one of the smaller malls here in Barrie. She and her sister would bring Jeff to the mall. Then the three of us would meet while Jeff shopped with his aunt. We found each other in the mall and then scouted the mall for the perfect spot. We found a bench in the mall that was perfect. We could view what was happening in reflection while we were out of sight.

The set up ...

Mom and Sis and Jeff take a seat on the bench. Then Mom says, "We're going off to the bathroom. We'll be back in a minute. What are the rules?" He looked exasperated, like he'd said them a thousand times, "Don't talk to anyone, don't leave this spot." She gave him a quick kiss and they were gone, he was alone.

The follow through ...

As soon as they were around the corner, Joe walked up to the bench and sat down, a little too close. Jeff, really noticed that Joe was in his space and squeezed hard up against the arm of the bench and looked away. Joe started chatting with him. At first Jeff said nothing, but then started answering basic questions. Joe learned that Jeff was in the mall shopping with his mother and his aunt. That they were coming right back. He didn't learn Jeff's name, his address or where he went to school. Jeff kept saying that the questions were private. Then came the big moment. Joe said, "Why don't we go and get a hot chocolate, it's just round the corner, your mom with find you."

The resolution ...

Jeff looked at him and said, loudly, "You are a stranger, why do you want to buy a little boy a treat!?!" At this point several people in the mall looked over at Joe and Joe went bright red. Mom came from around the corner, I stayed in place. I knew if he saw me, he'd know what was going on. It was better that he have the feeling of pride for standing up for himself.

Joe quickly retreated when mom came on the scene.

"I'm never going to do that again," Joe said, laughing in the car on the way home. We agreed that Jeff had done really well. He showed discrimination, he recognized that Joe had sat closer than he should have, he answered only questions that were impersonal and kept private all identifying information. And best of all, he asserted himself in a way that alerted others on the scene. It was perfect.

We talked later on the phone and she was over the moon with excitement. "This doesn't mean that I'm going to leave an 11 year old on his own a lot, but I know now that I can trust his skills."

"What's Jeff up to?" I asked.

"He's here telling his dad about what he did, about how a bad man wanted to buy him a hot chocolate and how he told the bad mad to leave him alone."

"That's awesome."

"For the first time I think he really gets it."

"He's proud of himself then?"

"Not as," here the phone became muffled for a second as she started to cry, "much as I am."

Pig Anus

They had all gone out to a bar for a couple of drinks and to gossip and share time for each other. Most were deaf, some were hearing, but sign was the mode of communication. Talk flew thick and fast. Every member of the group was a fan of the television show 'Fear Factor' and the talk turned to the events on the show the previous evening.

The woman telling me this story could barely suppress a grin as she told me of her night out with friends. She was attending a conference I was giving in Almonte and had come up just before afternoon break had ended. Before break I was emphasizing how the subject of the workshop 'The Ethics of Touch' was even more important to me now that I was in a wheelchair. People touch me differently, talk to me differently, use different tones of voice with me. I had always known, intellectually, that people with disabilities were treated differently, but know I knew this in a different way. She approached me and said, "I can tell from your workshop that you like funny stories, let me tell you one."

As they talked about 'Fear Factor' and the things that the contestant had to do they were using sign and facial expressions to communicate how disgusting some of the things were. Signs like 'pig anus' and 'slime and muck' were used along with a grimace or a sick look. Sign language, like spoken language, communicates tones and shadings of words. I learned this when I worked with deaf kids for a few months. It's possible to sign 'stop' in a casual tone and it's possible to yell 'STOP' by deliving the sign with more speed and force along with a vein popping expression on the face. The group was laughing as they put as much meaning into 'pig anus' as it's possible to do. The woman telling me this story was obviously an accomplished signer. As she told the story she kept slipping into sign as she talked. It think I saw 'pig anus' three or four times - it's not pretty.

A woman approached them after determing that a few of the signers could hear, "I really don't want to bother you or interupt you," she began "I just want you all to know that I think your language is beautiful."

She had no idea why this statement sent the group into hysterics.

The Speed of ...

I'm pleased. Very, very pleased. For the past year and a half, I've been working with Vita Community Living Services on trying out ideas which have the outcome of creating an agency where abuse is less likely to occur. Statistics show that people with disabilities are often victimized while in care, Vita has made it a mission to try new ideas and approaches with the eye to offering every single person in care safe harbour.

One of the ideas was to look at how to make a large agency which sprawls over a large geographic area into an agency that feels intimate and close. Where distance is reduced between staff and the level of the heirarchy between frontline staff and upper management is made less daunting. Open communication between the levels of heirarchy in an agency creates an atmosphere where people are less afraid to report concerns, talk about real issues and face up to practices that are less than perfect. We decided to start a book club within the agency wherein staff would sign on to read a book that has a disability theme and then we'd get together an talk about it. Learn from the book and learn from each other.

We started by giving a selection of books to be voted on, The Speed of Dark by Elizabeth Moon, Dissolution by C. J. Sansom and Too Big Too Miss by an author whose name escapes me. The Speed of Dark won and then 15 staff signed on to read on their time, meet on Vita's. Over the weeks that the book was being read, a buzz started about the book. People chatted about where they were in the book and all held off telling the ending. Every single person who read the book felt that they were challenged by the text to rethink disability and rethink service.

Today we held the first of two meetings. A front line residential staff, the art therapist, a director, the executive director were all part of the group. We all were equals as we discussed the book and then moved into a really passionate discussion about service and about Vita and about what kind of agency we all wanted. Two hours later we all sat back like we'd had a fine meal and said, "That was good."

What intended to happen, did happen. The agency felt a little closer - the heirarchy a little smaller, we all were a little wiser, and a growing sense of corporate community has begun.

I'm proud to be part of an organization that wants to serve well, wants to examine how we offer service, wants to try new ideas. There was a moment when I just sat back in the meeting and everyone was talking all at once excitedly about ideas, about ideals and about service.

It can't get better than this.

Monkey Face

A few months ago I wrote about my wallet. My old worn out black leather wallet with ripped coin purse and a faded radio sticker with the call name Dave that was given to me by the folks at KW Hab. I loved that wallet. Joe hated that wallet. For Christmas several years running I got an assortment of new wallets. I never used them, didn't want them, resented getting them. He didn't understand. Said they were the same as my old wallet, only new. I said they weren't the same as my wallet because they were new.

When I wrote about this last time I pointed out that my wallet was 'mine'. Absolutely and completely mine. Not shared. Not part of 'us'. Completely mine. And I liked it just as it was. I wanted to make the point, then, that people have attachments - silly or not - to the oddest things. That its wrong to take away these things, to talk people into giving them up, to use disapproval as punishment for not seeing the world in the prescribed way.

I was surprised when many people posted about how I could keep my wallet and get a new one at the same time. Put your old wallet in a special place was one suggestion. It didn't make sense to me, the special place I kept my wallet was in my pocket. Cut the wallet up and make a key chain with the leather and Dave sticker ... EEEEEEEEK! Get away from my wallet you butcher. I wanted to scream at the screen: "But it's my wallet, why do you care about my wallet, why do you all want me to give up my wallet!"

Admittedly, I knew you were all right.

But your being right doesn't subsume my right to be wrong.

So it will suprise you to learn that whilst in Owen Sound we were wandering around Wallmart and I spotted a very cool black cloth wallet with an awesome monkey face embroidered on it. I pushed myself over to examine it. Perfect. I couldn't understand why it was marked as a 'girl's wallet' but who cares, I'm daring, self assured in both my manliness and maturity. I plopped it into the cart. Joe picked it up and asked, totally confused, "Who are you buying this for?"

"Me," says I.

"But you've got a hundred new wallets at home."

"I don't like them, I like this one."

"It has a monkey face on it."

"Yes."

"It's a girl's wallet."

"So you say."

His face looked stern, "Well then I'm going to take the wallet I gave you last year, I need a new wallet and I might as well use that one."

"Be my guest."

We strolled away and I smiled at the idea of my new black fabric wallet with the cool monkey face on it.

On the way out I said to Joe, "Remember that conversation we had about choices for people with disabilities in the car." (We really do have the best conversations some times about disability issues and themes.)

"Yes," he said, warily.

"You know what my new wallet is?"

"What?"

"Uncoerced selection. And that is why I like it, that's why I bought it and that is why I'll use it."

I knew I had to give up my old wallet one of these days. Every time I was prompted to get a new one, nagged to replace the old one, my heels dug in a little further. I became defiant. About a silly wallet because I wanted to do it in my own time, in my own way and I wanted to pick out the next one myself. You may call this childish, I call this freedom.

Really, I Mean REALLY?

Panic wells in my chest. I don't want to answer the question. Not that it's a hard one, "What movie do you want to go see?" But the thing is for one of my friends, this is a question that has a right answer. Make the wrong choice and it's "Really? THAT'S the one you want to see?" The trouble with writing this post is that there is no way I can communicate to you the tone of his voice. The condemnation in those words. Now, when asked the question, I just try to guess the right answer, I try to pick a movie that will meet with approval.

You're wondering now how I could be friends with someone like that. Well, there are other aspects of our friendship that I enjoy. And besides, everyone I know does this about something, "Really, you like that song?" "Don't tell me that you actually watch the Young and the Restless." "Please don't call murder mysteries, literature." Everyone has an opinion on everything, and everyone seems mightily convinced of the rightness of their opinion.

Even me. Kraft Peanut Butter is the only really good peanut butter. You eat ... what?

Most of us have the ability to stand up to these little daily assaults on our self esteem, our tastes, our choices. We've learned to like what we like and be damned the rest of you. But, for me this was a lesson tough to learn and a way of living that's tough to maintain ... ergo, my capitulation on choice of movie to my friend.

I thought of all this when I was talking to a group of staff about the issue of 'choice' in the life of people with intellectual disability. It came clear to me that 'choice' could only be made where there was both self-esteem and assertiveness. I saw a definition of choice for people with disabilities that helped me think this through. Choice is uncoerced selection.

Most agencies are concerned about the opportunity for an increased number of 'selections' but have not put much emphasis on the 'uncoerced' part. There is only choice where there is no fear of punishment. Where there is safety to select. Where there the word 'REALLY' as in, "Do you REALLY want dessert?" "Do you REALLY want to buy that blouse?" does not exist.

For the last year and a bit, I've been working on discovering changes that agencies and families can make in order to increase safety from abuse - physical and sexual. But now I understand that the job is bigger than that - it's the reduction of coercion and the increase of assertion. It's working towards a service wherein we eliminate the little sins as well as the big ones. It's teaching people to stand up to us when we slip up and try to suggest that 'Sound of Music' for the 10,000th time isn't a choice that should be made.

I heard a sermon once about how many people are self satisfied and convinced of their righteousness because they don't commit the big sins, murder, adultery, worshiping golden idols, larceny, perjury and the like. But, the minister continued, what about the little sins. Stealing pens from work, undermining someone's character with snide remarks, not bothering to visit someone in the hospital because you're 'busy'. It's the little sins, he said, that clog up the soul - not getting through the day without committing murder.

This stikes me as important now as I think about this. I know, without question that I have used tone of voice and my personal status combined to get someone with a disability to agree to the 'right' choice. All without realizing that if there is a right and a wrong there is no 'choice'. I know that I have used subtle coercion - because I could, because I wanted to, because I didn't see it as important. And I'd go home feeling like a great staff because I didn't commit the big sins of abuse.

Uncoerced selection.

I have decided to tell my friend the next time he says that it's my turn to choose the movie ... that choice means uncoerced selection and that means that whatever I choose, he's gotta just say, 'Great let's go.'

REALLY.

And the next time I eat Kraft peanut butter I hope my tongue sticks to the roof of my mouth - keeping me silent when you tell me you like Jiff.

Really.

Booking Time

I was tired and I was rushed. The lecture day was over, Joe had loaded the car, and a woman was standing talking to me telling me a story. I was listening, kind of, but I noticed Joe tapping his foot to the 'Let's go, let's go, let's go' beat. And because of this, I missed the point of her story. But I wasn't alone in this.

When we got to the car, Joe asked what she was telling me. I told him that she was a bus driver, driving kids with disabilities to school and back. She told me of a story about a little boy who got on her bus who would upset the other kids because he would scream long and loud. She tried several solutions to get him to sit quietly. None worked.

One day she brought a large picture book on the bus an sat with him. Getting him to turn pages and she'd read the words to him. She did this for several days and then noticed that he would now quietly turn the pages of the book. It was something that worked.

Several weeks later she decided to tell the teacher at the school about the solution to the problem of screaming on the bus. "He likes," she said, "looking at books on the ride to and from school." The teacher, not always a receptive lot, rolled eyes and said, "He's blind, he can't like picture books."

The driver was embarassed and wished she'd said nothing.

The woman told me this story to illustrate the point of 'poor communication' as the subject of my lecture today was communication.

I nodded and agreed that we do communicate poorly, I didn't add but should have - that if you are a bus driver or a janitor or a playground monitor - you're so far down on the respect-o-meter that you might as well be a parent.

So, driving back to the hotel, telling Joe her story something clicked.

He stopped screaming.

He looked at the book, quietly.

He's blind.

All this mushed around in my head. I wonder if he really liked having her sit with him, give him a gift of a book, read it to him, describe the pictures. Maybe as he flipped the pages her words stayed with him, maybe he saw the pages in his mind, maybe he liked being talked to and included. Maybe it wasn't about the book, maybe it was about the caring, the times spent together, the contact she'd made.

Maybe everyone missed the point.

Maybe the screaming meant, "I'm lonely in here."

Maybe the bus driver caring was all he needed.

Maybe the book was more than a book.

He stopped screaming.

He looked at a book.

He's not the one who is blind here.

Room 19

What do they think is going to happen when we get there? We don't trust smaller hotels anymore and call and check several times that our room is accessible. We even explain what we mean by accessible - having one hotel thinking that accessible meant that we could get into the room. So, after a couple of friendly chats, after checking out their website, we were confident.

But last night we arrived at a small hotel and Joe went in to check in. I could tell by the look on his face that it didn't look good. He got in the car and said, "Well, lets take a look." He had the key for Room 19 in his hand. He started the car and we drove round the side of the hotel and then down a steep driveway with a little roundabout at the end. There was no where to really park. Pulling over to the side and ensureing the emergency brake was well on, Joe got out to check the room.

He stepped down the steps to the walkway and then at the room, unlocked it and stepped up into it. He came back and said, "Besides not being able to get to it, you won't be able to poo in it either." Apparently they had a very low toilet that was made accessible by putting a bar somewhere near it.

We drove back up to the office and went in. The woman seemed a little offended that we didn't like the room. It wasn't a case of not liking, it was a case of not being able to get to it, get into it, use it when we were in it. So she took Joe off to see another room. This one was worse still, but she stood and explained how Joe could wheel me over the lawn, which was so damp that his foot sank into the earth, then he could heave the chair up inot the room. It was on the topic of the bathroom that she finally gave and admitted that "We really don't have those kind of rooms."

Now we are stuck in a small town, with no where to stay, it's Sunday so we can't call the agency who booked me to speak for advice. So we drove a long way back to a town where there was a chain hotel who luckily had one accessible room left. But that means we've got to drive a long distance to do the training each day but, of course, we're willing.

Besides being lied to about their rooms, what was disturbing was that we were being treated as a 'problem' and a 'bother' when they booked the room to a wheelchair user. It was like they 'wink wink' knew that wheelers could really walk and climb stairs if they just wanted to. "Come on, we won't tell.'

It is these times that I find my disability disabling. Times when we have to drive miles away to get a place where I can get around. But, I keep having to remind myself. It's about Room 19. It's about being disabled by the environment, not the chair. If Room 19 had been what was promised, I'd not be feeling even the slightest bit disabled.

Damn Room 19.

And damn those who lied about Room 19.

Because, here I am, in room 251 and suddenly my disability doesn't matter any more.

One Tomato Two

Normally, it doesn't make me angry.

Normally, I don't even notice.

Today, I noticed.

Today, I got angry.

It's a common enough sight when grocery shopping, people pick over the fruits and vegetables looking for just the right tomato, just the right peach. We were going to try a new recipe for Fresh Tomato Pie and I was sitting with the flimsy store bag in my hand waiting for a woman to go through each and every tomato on the stand. She'd pick one up, examine it for even the slightest imperfection and, when found, her face would screw up like she'd stepped in poo and she'd toss it aside and then look for another. We waited a few minutes and then I told Joe to pick up the other items and I'd wait my turn.

And I did.

Stewing.

Saying nothing.

But I hated what I saw. The search for perfection. The tossing aside of a perfectly good tomato because of the slightest flaw. "This," I thought, "is the problem."

You see this morning I was reading the paper, it was a beautiful sunny day - perfect for lounging about and catching up on the news. Then I read an article about an Italian mother who, carrying twins, was informed that one of the twins had Down Syndrome. She asked for the one with the extra gene to be aborted and the other, the normal perfect one, to be kept safe. During that abortion the wrong baby was left behind. The typical kid was aborted and the wrong baby, the baby with Down Syndrome grew on. Devastated at the tragic loss of the 'right' baby it was decided that the 'wrong' baby would now be terminated.

In all the discussion of this, the tragedy of the loss of the normal child is emphasized. The kid with Down Syndrome, the disposable, flushable, abortable baby - well, it's survival of the first attempt on it's life, that was a tragedy. Now the family is looking at all sorts of law suits because of their pain and suffering. They mourn the loss of the baby they wanted. The right and good heir.

Well as far as I'm concerned, that kid with Down Sydrome, was the 'right' baby.

Unfortunate to be given the wrong family.

Anarchy in Angus

It all started with getting gas.

We were parked at the station and Joe was in paying. I was looking at posters stuck up in the window of the gas station and noticed one that announced that Anarchy in Angus 2 was finally here. On the poster were four guys making 'angry he-man' faces, fists up. When Joe got in the car I pointed the picture out to him and said, "Let's go!" He looked at me and said, "You are kidding, right?" I told him that we were in a rut, we should do something different than we'd ever done before and that wrestling fit that description. In a second, Joe as into the spirit of the thing and we bought tickets right then.

The doors opened at 6 and we were there shortly after. I wasn't sure what they'd do for wheelchair seating and I wanted to be able to be up close. This, I was absolutely certain, would be the only time I would ever go to wrestling so I wanted to actually experience it close up. Wheeling in, I noticed something odd, people quietly and without fuss made room for the chair and absolutely no fuss was made about getting seats. The ring was in the center of the gym and movable chairs were set up on it's four sides. "Push aside any seat you want," was the instruction given.

As the crowd arrived they were clearly in the mood for a good time and people were grabbing places to sit and, true to advertising, there was a fair degree of orderly anarchy in Angus. Rows grew and shrunk as chairs were grabbed and moved. For a while I had two people in front of me, then four, then one as people got settled in.

When the wrestling started, I was impressed with the showmanship and with how hard the guys and gals worked to give the crowd a fun time. The kids were in heaven. One boy in front of me said to his friend after a spectacular lift and drop (do not expect me to know wrestling terms) "It just doesn't get better than this."

And for awhile for me, it didn't, as far as anyone was concerned I could have been sitting in a regular chair. No stares, no pointing, no notice, nothing. Everyone was fixed on having a good time and it was an egalitarian evening.

Last week we went to a play, we saw, Pump Boys and Dinettes, and though the staff at the theatre were nice, several people made a big deal about stepping around the chair, about the fact that I sit tall in my chair, about having to wait for me to push into the theatre. People who would sneer down their noses at a wrestling crowd did the same to me.

But not here.

As costumed men and wild women slammed each other down on the mat I was just part of the crowd.

Before going that evening I had made a joke, a few times, about what I expected. "I'm more afraid," I said, "about the people attending than I am of the guys wrestling."

That was a snobbish thing to say.

I was wrong.

I apologize.

A Minute

21 maybe 22 with a pretty significant disability. She was laying on what we used to call a 'banana cart' gazing around the mall. Her care provider must have slipped into a store because she was clearly at that moment alone.

Joe and I had stopped to get a falafel pita on the way home from work. It was blistering hot out and the mall welcomed us to a cool oasis. We'd finished eating and Joe said he wanted to run down to check out to see if the mall had a Roots clothing store because he wanted to replace a pair of walking shorts.

I told him that I'd just wander about a bit by myself and to just check the stores in that vicinity when he came back. I had pushed myself only a short distance and was enjoying being alone and being cool when I saw her. She was in an odd position and she seemed to be staring at the store directly opposite her. I pushed myself into her view and noticed that she squirmed a bit as if she was trying to see around me and into the store.

I pushed away to see what it was she was looking at and realized that the store was actually a bit difficult to see into at wheelchair / banana cart level as it was mostly mirrored along the bottom. She was looking directly at herself. Appraising herself. Immediately all sorts of thoughts went through my head. I thought that she was seeing herself as a small frail being on a banana cart. I thought she'd be seeing the way her body lay, a little twisted, a little turned. I thought that she was seeing what I was seeing, in other words.

Suddenly a hand slowly came out from where it had been tucked away behind her. It moved like I imagine the Canadarm on the space shuttle moves, carefully, slowly and with a tendency to jerk. She didn't notice me watch her. She concentrated on her image in the mirror. Her hand formed into a fist with only one finger extending. Then, carefully, that finger lifted a curl of dark hair that had fallen onto her brow and pulled it slowly back into place. The effort the movement took showed on her face.

Then her hand retracted and folded back in place behind her. She burst into a smile at herself, pleased with how she now looked. She wasn't a woman on a banana cart. She was a woman fixing herself in a mirror. I had seen what others had seen, she had seen herself.

A stout woman came out of the store and said, "Sorry for leaving you so long love, you must have been bored silly."

She hadn't been.

As she was pushed by me she saw me, looked straight at me. I knew there was an intellegence in there. A woman. I said, "Your hair looks great!"

She winked, smiling because her little act of vanity had been caught.

"What on earth did you get up to?" Said the stout woman pushing her along the walkway in the mall, "Can't leave you alone for a minute.

I heard them both giggling as they walked away.

Joe came back and said, "Did you see the woman ..."

"Yes," I said, "and I know why they are laughing."

"Can't leave you alone for a minute ..."

Very

I heard the news this morning on the way to work.

And I remembered.

Years ago, I came to work, on a day very much like this one. Lincoln Alexander had just been appointed to the position of Lieutenant Governor of Ontario. It was, I knew a big deal. He was the first black person to hold that position and we all knew that a significant line had been crossed in the life of our province. I arrived early, made coffee for the others, then went to retrieve messages and generally get ready for the day.

Ten or fifteen minutes later, I went into the coffee room and found the temp secretary, a lovely woman, crying softly at the coffee table with the newpaper resting on her lap. I came to her quickly and asked if she was OK. I didn't know her well, she'd only been there a week or so, but it didn't matter, she seemed so distressed. She shook her head when I asked her if anything was wrong, if I could do anything. Then she picked up the paper and showed me the reason for her tears. There on the front page was a huge photograph of Lincoln Alexander.

"I never thought, growing up I mean, I never thought I'd see this day."

Tears sprang to my eyes. I understood, almost instinctively, what she meant. Yes, it was a big day for Canada and for Ontario. But it was a huge day for her, a black woman. That face in the newpaper that day signalled to every racist son-of-a-bitch to step back, but it also signalled to every black kid to step forward. It was a big day for a community. A community that wasn't mine. But a community that had it's own reason's for celebration.

And now today.

David Onley became the Lieutenant Governor of Ontario. A man who gets around on a scooter. A disabled man who has the courage to identify with the disability community. A man who has spoken before and will speak again about disability rights. The broadcast this morning mentioned Onley's disability but seemed to have no understanding of his community, of the 'bigness' of the day for a whole wack of people with disabilities. For me.

"Are you OK?" Joe asked as he'd noticed that I'd fallen silent and was looking away from the road and off into the distance beside me.

"Very," I said.

Two Witnesses

I got the same feeling in my stomach. I was at a conference and a regular blog reader said, "You know a lot of people think you make up stories for your blog because no one can have something happen every day." I was immediately devastated. I don't remember what I said but I remember remarking to myself 'but something does happen every day, I mean I do go through my day AWAKE'. I read another blog a few months ago, I don't remember the blog - sorry to the blog author - said something like, "Having a disability is like a trigger for people to be socially inappropriate with me every day." I remember thinking, "How true is that?"

It was like when I first started getting recognized publicly. I had been lecturing for a few years and been the subject of a one hour television documentary and a 'talking head' on two or three other television programmes. I was in an airport and someone approached me and said, "Are you Dave Hingsburger?" I was shocked and, truthfully, a little pleased. It was a nice feeling. I came home and told Joe who had a 'Yeah, sure,' look on his face.

Over the next several months it happened more and more often. Joe was never with me when it happened and I was always frustrated because I really wanted him to see what was going on. Then we were in the food court in the airport in Minneapolis. On cue Joe had left to get some thing at the Chinese food place and I had picked up a pizza slice and was sitting at a table. A woman approached and said, "Are you ..." and I groaned. She immediately apologized for bothering me and I said, "No, no, it's OK, except this happens all the time when Joe is away. Could you stay a second so Joe can see that you aren't a figment of my imagination?" She laughed and said, "Sure."

"See!" I said to Joe after she left. Since then it's happened several times when we are together and Joe no longer questions my stories about recognition.

Well, on Labour Day we were out with friends for tea. We were all chatting and the woman sitting at the table next joined into the conversation for a wee bit. It was all very friendly until. Out of the blue she leans over to me and says, "I'm a nurse and I'd like to know what caused your disability? What's your diagnosis?"

I don't know what being a nurse has to be with being rude, having no boundaries, and asking someone a personal question, in public, in front of friends, in Starbucks, on a holiday Monday. But oddly, I was really flustered. If I'd been alone, I'd have confronted her for what I considered to be a intrusive question. But I wanted my friends to see me as being more socially graceful. So, all I said was, "I'd rather not say." She looked at me, glared for a second, and then smiled and said, "But I'm a registered nurse," and waited for a response.

Again, I'm not sure what being registered had to to with not having boundaries, not respecting my privacy, not gauging the seriousness of my previous response.

Quietly, but firmly, I said, "I'd rather not say." She was really offended but that stopped the questioning.

It festered in me and I wondered what my friends all thought. Firstly, this kind of thing happens to me all the time. Most of the people aren't nurses, registered or otherwise, most people - even if they are a trucker - feel they have a right to personal information about my disability. But this had happened in front of others. So I asked, "What did you think about how I handled the question about my disability?" Something odd happened, my friends immediately responded about how they were glad I didn't give out the information, about how that woman had no boundaries, about how they were shocked at the intrusive nature of the question. All things I needed to hear. I had begun to wonder if it was just me, if I was being offended needlessly, but here they were giving me support for living a life with dignity and privacy. It felt really good.

On the way home, I thought about that post written by another person with a disability about people spontaneously becoming socially inadept when someone in a wheelchair enters the room. It sure is my experience. But I said to Joe, "At least I have witnesses this time!"

Right?

Conflict

A young man with a disability was killed this weekend in a tragic accident. I didn't know him well, but I knew him. Upon hearing the circumstances of his death I had a mix of emotions that will be hard to explain but I rush to try.

He was fairly skilled and as such he lived in a Semi Independant Living kind of situation and he loved having his own place and making his own rules. Sometimes when he woke up early, 3 or 4 in the morning he would get up, get dressed and cleaned up, and head out on his bike for a coffee at one of the 24/7 kind of coffee places that he frequented. It was on one of these excursions that he was hit by a driver and accidentally killed.

His death is surely tragic.

I understand that.

Any life cut short, lost, is tragic.

But.

Many years ago I worked in an institution and remember the death of a man there of similar age. He died in a room with many others, no space really his own. He died kept away from the community - for his own safety. He died with little of his own - including his will. He died early. Too young. But still he died.

Later, working in Toronto as a Instructor at a "PreVocational Center" the press was alive with the story of a woman with Down Syndrome being struck by a bus and being killed. The stories were about 'letting people like that out unattended,' the 'failure of the service system,' the 'dangerousness and foolishness of the philosophy of integration and inclusion'. There was the assumption that her accident was due to her disability. There was the immediate call for a review of service - how could we have let her out on the streets alone.

Pray God we are past that kind of nonsense.

But pray also that we have come to see joy, even amidst tragedy.

This young man died living HIS life.

This young man died making HIS decisions.

This young man died doing what HE loved.

This young man died feeling HIS freedom.

This young man died while living.

In contrast to the thousands buried in institution graveyards who died long before death. Who died in captivity, longing to be free.

I see the tragedy of his death.

But I feel the extraordinariness of his life.

So I am conflicted. I bow my head in prayer at the loss of his life. I bow my head in a prayer of thankfulness that he had an actual life to lose.

Godspeed to the victorious.

Tom and Jerry and other Telethon Stories

Several days ago I received a request to join, along with other disability bloggers, in on the "Blogging Against Telethons" protest day - today. Talk about hitting the right buttons with me, as someone who spent part of his youth in protest marches. Pro-peace, pro-women, pro-gay, anti-discrimination, anti-establishment, anti-pasto ... yep, I'm your guy. Even more, the MDA telethon always bothered me. Even as a child, it bothered me. Deeply.

I was a sensitive kid, which was a handicap (word chose carefully) itself growing up male in Salmo and led it various other traumas, but I remember going to the Calgary Stampede and paying 25 cents to go into the 'Freak Show' and getting only part way through before having to leave. I threw up behind the tent and hid myself away for hours trying to rid myself of what I'd seen. The 'Freaks' didn't bother me, but sitting there being on display for money seemed to be to be horrific. I hated being part of the crowd, wanted to apologize for having looked, wanted to crawl under the earth for even having thought about going into the tent in the first place. I got this sense from watching the telethon. Having Tammy or Timmy - poster children didn't even have their own names, they were given names that were marketing friendly I guess, anyways having them come out for public view, for public sympathy caused me to feel actual nausia. Again, to be clear, not at the fact of their disabily - but because of the public display, for money. Then on, I never thought about the telethon. Didn't watch, joined in when others complained, but didn't watch.

Never thought much about it again until I was working for West Toronto High school as a classroom aide with students with physical disabilities. Three boys in the classroom had Muscular Dystrophy. I had started mid-year and after the summer break came back a few days early to help get the classroom set up. I thought for the first time in a long time about the telethon, there were three kids with MD in the class. What were they feeling as their disability was being broadcast over the airwaves that final weekend before school? Two of the boys, brothers, were very shy and always seemed fragile. I knew I couldn't ask them. But the other boy, Tom, was quite a wit. I figured he'd be up to it.

When he came to school there was much activity. A couple days later we had some time alone together and I worked up the courage to ask. So, I did, "So, Tom, I'm curious, what do you think of the Jerry Lewis telethon?" He looked at me like I'd kind of offended him and I immediately began to apologize. "No," he said, "I've been waiting for someone to ask me. No one ever has."

"I hate that damn telethon," he said, "first God gives me Muscular Dystrophy and then Jerry Lewis claims to have boffed my mom - talk about adding insult to injury." We both laughed. He went on to explain that he had no difficulty with raising money for research, was even grateful that they did it, but did they have to present his life like it was over before it started? Did they have to evoke real pity? Did they have lie about what it was to have a disability and be in a wheelchair? Once he got going it was hard for him to stop. When he was done he said, "That felt good, thanks."

We never talked about it again. And again, the telethon left my head.

My Mother-In-Law, Ellen Jobes, was a telethon addict. She got herself set up with a big mug of beer and clamato juice (I kid you not) and she'd sip at it while watching the 'thon'. She stayed with us over the Labour Day weekend one year and I expected her to be plopped in the chair with a bit of foamy red over her upper lip watching Jerry. I had resolved to say nothing about it. She didn't, at this stage of her life (really, really old) need me yapping at her. But I was surprised when I came upstairs to find her not watching telly at all.

I asked her why she wasn't watching the telethon, she said, "I got annoyed last year watching it and I don't want to watch this year." I was curious so I asked, "What annoyed you?" She explained that she needed her cane full time now and sometimes she needed a wheelchair to help her get around airports and was working up to needing a walker. "When Jerry started to go on and on about kids being in a wheelchair prison, I knew it wasn't true. The wheelchair isn't what I'd thought it would be. It wasn't what I feared. It was just something that helped me get around. Jerry shouldn't lie about that." That was it for her, at least for then, she went back to watching the telethon but for 'entertainment'. However, one year, Jerry lost a viewer.

Then I forgot about it again. I don't watch it, no one I know does, and I was surprised to get a request to protest it this year. Do they still air that damn thing? was my first thought. Then I thought of Tom and of Ellen and of those people in the tent in Calgary. And it all came back. Differently this time because I'm in a wheelchair. So ...

This blog joins in the protest about any use of disability to engender pity, reinforce prejudice, cause ridicule or create barriers to understanding - this would include, of course, the MDA telethon.

***

For more information on today's protest ... or to find other blogs participating, please visit http://www.karasheridan.com/ and you'll be guided through the protest day.

Little Girl Sitting on a Barrel

Suddenly she was there. My stomach clenched. It couldn't be. I blinked my eyes, but the camera had panned away.

Where was Joe? Where was Joe? Where was Joe?

I couldn't take my eyes way from the bank of televisions. I heard Joe call me from the next store down in the mall. I waved frantically for him to come. I didn't look away. They were still panning over the camp. Every television was playing the same channel. There must have been twenty or thirty broadcasting. Joe rushed over, "What's wrong?"

"Watch!" I commanded trying to slow my breathing, "I saw something incredible. It may happen again, they are still panning the same area of the camp."

"You saw something incredible on the History Channel?"

"Yes, watch!"

"Oh my God," Joe said as the historical footage taken at the liberation of one of the Nazi Concentration Camps hit his eyes. No matter how often you see these kind of ...

"There!" I almost jumped out of my chair. "Look! LOOK!"

"Holy Shit," Joe saw her and, like me, had a visceral reaction.

Sitting atop a barrel looking back at the camera with eyes that didn't belong to her anymore was a little girl with Down Syndrome. Devastation had been wrought around her and she sits peaceably on a barrel looking directy at the camera!

Then, she was gone the programme had cut back to the talking head.

Joe is a WWII buff and we've seen practically every documentary, every movie, that had anything to do with the period. We've even read Berlin Noir - the triology of murder mysteries set in Nazi Berlin. My interest has always been more regarding the extermination of people with disabilities. What happened at Hadamar in particular and I want to one day visit the memorial there. It has always frustrated me that there is little emphasis put on the Nazi experimentation with means of mass destruction on the institutionalized disabled. The book, "By Trust Betrayed" by Hugh Gallager, stunned me with his ability to document the horrors of what happend to people with disabilities in Germany, with his ability to tell a story, and passion to get it right - this was the first book that made that history really real to me. Yet in all my readings I could not imagine a person with a disability making it to a death camp. And once there surviving it.

Who was this little girl?

Joe went into the store. They had so much merchandise that I couldn't get in. He asked if they could check to see what channel was showing the documentary, and if possible, what the name of the documentary was. They looked at him as if he had asked them to actually provide customer care, told him they didn't have time for that 'kind of nonsense' and he came out and said, "I wished it was you who'd gone in." (At times my ... umm ... personality ... really annoys Joe and at other times he likes to send me in like his own personal 'hell on wheels' to deal with snotty clerks and the like.)

"Forget the store, I'm not in a mood for a fight."

"Why?"

"She survived. If there is a Top Ten list for miracles, this would be near the top. I've got a glow on."

But now we're home and now it the next morning, I feeling refreshed because I went to bed early. Joe, though, stayed up and watched Hitler's SS: Portrait in Evil which started at 8 and went on to 10:30. I didn't think the television broadcasted that late!

This all leads up to ... DOES ANYONE KNOW THE NAME OF THAT DOCUMENTARY!?! I'd really like to track it down.

She made it.

But, what happened next?

Property

I had expected his eyes to be angry. They weren't. They were sad.

Given that I mostly work with other adults, I forget how small seven years old is. He sat in a large chair and when I introduced myself to him, he pulled his legs up and curled into the corner of the chair. Then he looked up at me and I saw those eyes.

Of course I never meet people who come for consultations without already having a picture of them in my head. I've read reports, talked to people who know them - love them - worry about them and of course this information effects me. I had been told that he was an angry little boy. He had been in foster homes for several years, bouncing from one to another, and had been recently adopted by a mom and dad who specifically wanted to adopt a child with Down Syndrome. They'd expected, they'd said frankly, "a happy Down Syndrome boy who loved everyone." But they'd gotten a different package. A kid who resisted hugs, who gave little and wanted less. A kid who's anger took hold of him in ways that were frightening. They had several consultations, evaluations, and had requested another. They were getting, they felt, no where.

I pictured an angry pair of eyes.

But they were so sad.

I started with him the way I always do. "Do you know why you are here today?" He seemed surprised by the question and he answered, "Because I have Down Syndrome."

He was so far from the mark that I couldn't keep astonishment from my voice, "Really?" I asked. Surely he'd know that he was here because he destroyed rooms with his anger.

"Yep." He had glanced at me and now he was looking down.

I fell silent. This was not a therapeutic trick. He'd thrown me and now I was trying to reset my own agenda. Figure out what question to ask next. The silence though seemed to interest him. He looked up at me and asked, "What's wrong? Why aren't you talking?"

I said, "You know, sometimes I get in trouble here at work."

"Why"

"Because I don't want to do what they tell me to do."

This interested him, "Like what?"

"Like I'm supposed to talk with you about your temper and try to get inside your head." Might as well be honest, he was.

"You don't want to do that?" He smiled. The smile didn't reach his eyes, but he smiled.

"No."

"Why?"

"Because I feel like playing X's and O's. You want a game?"

He grinned, "But won't you get in trouble?"

"Are you going to tell?"

"No."

"Then who'll know?"

He giggled. I moved my chair around, pulled out a piece of paper and drew the game board. Then I pulled a tooney out of my pocket and he called heads, I won. I always play X so I placed an X in the center of the grid. We didn't talk. We just played 4 or 5 games. He's a kid so he doesn't realize that once you know the game, the best you can get is a draw. So I let him win a couple of times. Sue me.

"Did you talk to them?" He asked while pondering the board.

"Who?"

"The one's who brought me." Note to self. Didn't call them parents. Didn't call them Mom and Dad.

"Yeah."

"They done yet?"

"Done what?"

"With me. They done?"

This was too big and I put the pen down and looked hard at him. "What are you talking about?"

"No one keeps me. Once they find out I have Down Sydrome, they don't keep me."

He's out of radar range. His Down Syndrome has nothing to do with the consultation. "What does Down Syndrome have to do with any of this?"

He started to cry. I don't like seeing kids cry. It makes me automatically want to cry too, to swoop them up and tell them it'll all be ok. I never do this. But it's an automatic response.

"My mom didn't want me because I had Down Syndrome, and all the people I lived with always talked about me having Down Syndrome. Then, they gave me back. These people, when are they going to give me back?"

"But they aren't going to give you back. They're here with you trying to figure out what will make you happy. They want you to stay. They never, ever, once said anything about giving you back."

"They always give me back." He said this more to himself than to me.

"Well, I figure you should just ask them. Instead of ripping their house apart trying to make them give you up, why don't you just ask them."

He nodded.

I didn't want to get in the way of a natural interaction by giving the parents a heads up, instead I just called the secretary and asked her to bring the parents back into the room.

The settled, looking tired and anxious. I said to him, "Go ahead."

He didn't look up and in a quiet voice said, "Are you going to give me back?"

Mom started crying and asked, "Is that what this is all about?"

He nodded his head.

"Why, never." His Dad answered, "You're stuck with us."

Mom noticed a pad of yellow stickies beside my note pad and grabbed it, wrote something on it, then came around and stuck it on the shoulder of his hoodie. He took it off and looked at it. Not being able to read yet he handed it to me.

It read, "Property of Mom and Dad."

Chris Goes To The Mall

Big hair, bigger smile, I think that's how I remember my first sight of Chris. I was going to be presenting at 5 Oaks, a United Church camp, where K-W Hab was having their annual staff retreat/conference. I walked into a smaller room to set up my notes and prepare and Chris was came in the room to welcome me and within seconds she was sitting down and we were chatting. I started coming to the K-W conference to try out new lecture material and to keep in touch with a gang that I really came to care about.

As we both work in the same field and in the same province, without question we would run into each other regularly. It was always a pleasure. We discovered we had things in common and both had a shared vision of what it meant to provide good care. Last time I saw Chris she, like me, was using a wheelchair. She and a gang from K-W had come to hear Dick Sobsey present and Chris didn't want to miss it even though she was recovering from knee surgery.

We ended up chatting yesterday on the telephone and I was asking Chris if her experience of being in a wheel chair had changed how she saw disability. She said that she primarily uses a walker and she has indeed encountered situations regularly that made her realize the importance of dignity when interatcting with another. Then, serious stuff done, we switched to funny experiences in world of disability.

Chris told me that she was walking from car to store in a mall and had stepped down wrong on her knee. She was in a lot of pain and she knew she had to move more slowly and more carefully than ever before. As she started towards the store she noted a man stopping and holding the door for her. She knew that the walk was going to take some time so she said, "That's OK, don't bother holding the door."

"He wouldn't leave," she said.

"I had to try and speed up because it was going to take forever and I didn't want him standing there. I didn't want to hold him up. I kept looking up and saying 'Really, it's ok' but he wouldn't leave. Sweat is rolling down my back as I'm trying to get to the damn door, I don't know how many times I said, 'Please, go ahead' but he wouldn't leave. Now I'm really pushing myself and my knee hurts and I'm thinking unkind thoughts about that guy at the door, why is he doing this to me, why is he forcing me to rush, why doesn't he leave me alone, then I'd look up and say, 'Honestly, it's alright, go ahead, I'll be OK,' but he doesn't leave the door. I push myself harder, my knee is hurting, I keep looking up, he smiles, he doesn't get it, he doesn't leave. Finally, after what seems like hours, I get to the door and I get up the small step and inside. 'It's over,' I think to myself and then I look up and there he is at the inside door holding it open, blocking other people while I make my way over to him all I could think was ... Why wouldn't he leave me alone!"

Such is what disabled people often think when you think we're thinking, 'Oh how kind!"

***

Note to Chris: You asked me on the phone where I get my ideas for my blog ... well today the answer is ... from you. Ha! Ha! Bet seeing this here surprised you!

Poison Pen

It started a few days ago. Joe and I had been getting complaints from people about how hard it was to track me down for consultations and lectures. I don't have a web page other than this one and for years just relied on word of mouth. But the complaints have become more frequent so we decided to put our business email address in the 'my profile' section of Blogger and direct inquiries to us that way. It seemed subtle and quite accessible. In fact we've recieved several 'finally tracked you down through your blog' kind of emails. A couple of old friends have done the same, it's been nice.

But, I'm now getting email, once or twice a day, every day, from someone who really, really doesn't like me. I picture my phantom emailer as male, Joe pictures a woman. Either way, I'm now getting 'who do you think you are' kind of emails. I want to respond by saying, 'I'm someone important enough for you to waste time writing to ...' but haven't said it until now.

The thing is, my anonymous penpal, has horrible spelling. I shouldn't comment on this becase spelling isn't a strong suit for me either as a result I have a dictionary that sits beside me and Joe is usually only a holler away, so I get by. Even so, my spelling ain't great, but these emails have spelling that's right odd.

Today, for example, the email intended to say, I think, that I was a 'deluded person' but instead my chere correspondant wrote that I was a 'diluted person.' This struck me as suddenly very funny. I laugh at the oddest things. But right then, that combination of words seemed both so odd and so profound at the same time.

I would guess that I am, indeed, deluded much of the time. I think we all are. I think we get through our days by convincing ourselves that the world is not tottering on the edge, that good will defeat evil, that what goes around comes around ... I even manage to delude myself into thinking that sometimes it matters that I'm here and doing what I'm doing. I thank that's called, Affirmation.

But I think my ghost writer is also right ... I am a diluted person. Partly because I don't think the world could take me full strength, but also partly because I do find that the stresses and strains of just getting through the days has me diluting my principles, watering down my ideas and disolving my convictions. I try so hard for that to NOT happen. But it does, in little ways and in big ways, it happens.

Part of the reason I pray is to regain ground that I've given up. To grab hold again the things that matter, the things that I believe. To recalibrate my vision to ensure that I'm locked on the right goal, not the expedient one. So, my faithful fan, you're right. I do delude myself. I do let my ideals become diluted. I forgive myself the former and fight against the latter.

And thank you. Really. Thank you. For reminding me to hold fast. To pray more often.

Though somehow, I don't think that this was your intent.

Shopping

Yesterday I saw something.

After work Joe picked me up and we went grocery shopping to pick up stuff to make Vegetarian Sloppy Joes. I welcomed the opportunity to get out and move around a bit after being in a confined space all day for meetings. We decided to take a drive to one of the bigger grocery stores rather than to just go to our local spot.

On the way to the store I saw something.

A guy, about twenty five, who works at the grocery store pushing buggies and packing bags was walking home. I first noticed this guy the first day we moved to the area five years ago. He's one of the reason's we'll go out of our way to shop at the store. If they hire people with disabilities, they get my business. I became used to seeing him there as part of the store. I've never seen him anywhere else. I remember being a kid and thinking that the post office guy lived there because I never saw him anywhere else. So somehow in my mind, this guy existed at the store, but nowhere else in the world. In some areas of my life I grow but I don't learn.

So here he was walking home, obviously after work. He was holding his work apron bundled up in one hand. He was just chatting with one of the tellers from the store. I don't know what they were talking about but it had that aura that people get around them when they are gossiping about others at work.

We were parked at a light and they were on the corner. Again, I do it. I assume. The co-worker is either a friend or a family member. The guy with a disability is being walked home after work. Great to see them out in the community. Great to see him doing so well. Then the pedestrian light changed and the kid (under 40 is kid) said goodbye to the woman he'd been walking with and turned and walked in front of our car. He glanced over and recognized us as customers and waved. We waved back.

She turned and walked the other way. She hadn't been walking him home. They'd been walking together. Chatting. Being sociable. That's all.

When I first started in this field and was looking for work. There were precious few jobs in the community. I started work in an institution because the only people who might have imagined a future of community living and integration would have been Nostrodamus or Agnes Nutter, witch. It was beyond comprehension that people with disabilities could live in a world 'out there' instead of safely 'in here.' I believed that we were protecting from rather than stopping from.

The miracle of our movement is that we believed in people with disability. The reality is they didn't need our belief as much as they needed opportunity.

"Did you see that?" I asked Joe.

"Yes," he answered.

A sight for eyes that had been sorely wrong.

Affirmation

We stared at each other with disbelief.

"I think she has a better vocabulary than I do," said my co-therapist.

We were doing a day of meeting people who had been referred for service and as such there had been a line up in the waiting room all day. We tried really hard to stay on schedule and had managed pretty well. But the interview we had just done had run over a bit. We had met someone extraordinary.

She had Down Syndrome and a history of making up stories that ended in police involvement and investigations. It was serious stuff and she was a serious person. She had sat in the waiting room reading "O" the magazine put out by Oprah. We had been told that she was very, very, very, bright and that she read voraciously and was addicted to Dr. Phil. She came in with a sense of the importance of the meeting and a complete understanding of her own behaviour.

Did she know that what she was doing was wrong?

Yes.

How did she feel about the resulting furor and mess created by her telling tales?

Sorry.

With one word answers it was difficult to see the woman we had been told about. Very bright, very intuitive, very alert and aware. I took a shot.

"Is it attention that you want?"

"Noooo," she said drawing out the word so she could think, "not attention exactly."

"What exactly, then?"

"I think, affirmation."

"Affirmation, you mean like love?"

"Love," she began, "and affirmation aren't the same thing. You asked me about attention. I get a lot of attention, I'm very involved in the community. I get a lot of love too, from my family in particular. I think what need is affirmation."

"Affirmation?" we were both a little thrown by what she had said.

"Yes, affirmation," she said and raised her hands and lowered them to demonstrate a stream pouring down onto and into her, "you know, messages that I matter. Right now I need those messages from ..." she paused and pointed around, "out there. Because I don't feel them inside. Inside I believe I'm a mistake."

"Oh," we both looked at each other then back at her.

"So we need to help you with self esteem?" It's a good guess.

"No," she seemed frustrated, "with affirmation."

"OK."

When she left the room we had entirely forgotten that she had Down Syndrome, she was a woman who knew who she was and what she needed. She had gone on to say that she wanted to find positive ways to feel affirmed, but that she didn't know how. I admitted to her that I didn't really know how either, but that it would be an interesting journey. She agreed that it would.

I've spent the rest of the day thinking about her and her need for 'affirmation' and she is right, affirmation is not attention and it is not love. It's something much different. It's something we all seek at a deep level. It's something that many learn to live without. It's something that's she's unwilling to give up without a fight.

Affirmation.

"Messages that I matter. That I'm not a cosmic mistake." It's not a lot to ask for.

But it's a hell of a lot to get.

Incapacity

On Sunday we called a friend that we hadn't spoken too for awhile. We'd begun our relationship as work mates but it had transcended over time into a friendship. I think it was the night in the bar in Newcastle Upon Tyne that did it. We had loads to catch up on, losts of gossip to swap. Then, as it always did, the converstation moved on to the health and whereabouts of another mutual friend.

"He was doing well there for awhile but he keeps losing his battle with cocaine and he absolutely refuses to go into rehab."

"I feel sorry," I said, "Mostly for his family, but also for him. If it's possible to feels sorry for a stupid jerk."

We moved on to other converstations, away from pain, my upcoming lecture trip to the UK, some of the gigs I'd be doing, getting together at Paddy's Goose. That kind of stuff. When we hung up, it felt nice managing to keep in touch and maintain a friendship across the miles.

Our mutual friend though. Who probably needed my call more than ever. I couldn't do it. Not today, a Sunday. But then realizing my selfishness, I called, got voicemail. He's on another tear.

Oddly he had reacted the worst when I first landed in the wheelchair. His pity for me washed over me like an unwelcome wave at a water park. It seemed, though, that he was almost enjoying my disability. As if it had happened to him, not me. "Oh, poor me, my friend is in a wheelchair, why does everything happen to me."

But that's egocentricity for you. He once blamed me and my disability for a drug binge that lasted nearly a week.

After a short spurt of sobriety, he's back on the drugs. Disappearing for days no one knowing if he's alive or dead.

Put us two beside each other. Me, in the wheelchair. Him, freestanding on two feet. Me, slowly pushing myself to my destination. Him, quickly running to wherever he chooses to go. I'm sure that people would see me as the one with the 'problem'.

They'd be wrong.

Way wrong.

Incapacity has nothing to do with disability.

Right now he's incapable of getting through the day.

I'm incapable of getting through to him.

It is only in these moments that I feel, ultimately, disabled.

Chairman

It's a part of Toronto that we rarely go. Neither of us likes it much and neither of us feels as if we fit in. It's where the rich gather to shop and eat and stroll along the sidewalk. We went there on my inspiration. There's a new store there that we both like and I'd see an ad on the internet for something I wanted to pick up that was exclusive to that chain. So we went for a Saturday adventure.

I've only been there once since I've been in a wheelchair and we ended up having to dump me on the sidewalk before Joe parked because the parkade does not have an elevator and it would have been very difficult to manage the huge ramps. That's OK, I love people watching, so as Joe parked I pushed myself off to the side and then simply waited.

We shopped, we wandered a bit and then it was time to go home. I told Joe to head on down to get the car and I'd push myself on several meters to where it looked safe for him to pull over and get me loaded back into the car. It felt like a leisurely day so I just slowly pushed myself along. I wouldn't say that the glances at me were hostile but they weren't very nice. I felt like a charity case that had crashed a charity ball. You know the idea of us is one thing but the reality of us is another.

I guess I felt in the way. Intruding. At one point it got a little crowded and I had to slow down. I heard a kind of harrumph behind me and, it upsets me even as I write this, a guy much younger, much thinner and much richer than I, took hold of the grips on my wheelchair and started to push me. Without a by your leave or anything, he just started to push me. At first I panicked, I didn't know what was happening. Then when I realized, I grabbed hold of my wheels to break my movement.

I turned to him, angrily, I wish now I'd said, "Unhand me you cad!" but I didn't I said, less poetically, "Hey, let go of me!!!" He just kept trying to push me hard. I held hard on to my wheels. "You're in everyone's way, I'm just helping you."

"LET GO OF ME!!!"

He knew I was serious and now people were staring. He at least had the good grace to blush. "Don't you touch me again,"I said defiantly.

"I did not (he didn't contract his words) touch you," he was defensive and angry.

"Touching my chair is touching me."

"That is (really he didn't contract his words) just silly. I would think you would be grateful for the assistance."

"Well, I'm not! Don't ever do that to someone in a chair. It's assault."

By the time Joe got there with the car I was where I'd planned, but I was still quite angered by the intrusion into my space.

It was only later that the idea of being 'in the way' was also offensive but I'd had enough of offense by then and had to get on with my day.

Consider me Chairman Dave, don't touch without permission. Don't help without asking. Do that and we'll get along fine.

Compliment.

"Dad," the kid was talking in kid whisper. You know it, the voice that can be heard throughout the store. He was one of the cutest kids I'd ever seen. Part of that was because of the wheelchair. It was tiny. Toylike. It had been jazzed up. A friend of mine had said that I needed to get some stickers for my chair then suggested that we get a group together to "Pimp Dave's Chair". Well, I hesitate to say it - the kid's ride had been pimped. It struck me that I see very few small children in wheelchairs out and about in the community - but no matter he was here, now, with his Dad.

"Dad," he said more insistently. Dad broke from what he was doing and leaned down and said, "What's up kiddo?"

Now, I love the word "kiddo" I use it all the time with people I care about. It's a real term of endearment to me, it's informal, it bespeaks closeness, it's kind of fun. It's a great word. I never ever hear other people use it though I know that others must. It telegraphed to me a lot about the relationship between father and son.

Perhaps now you are thinking that I'm lurking around watching pere et fils but I'm not. I'm parked beside a tower of green peppers and I'm selecting them. This is an important part of cooking. Joe can't pick a green pepper properly because he's not the slicer-dicer, I am. You only have to chop a few green peppers to know that there's a certain shape which lends itself to good cutting. I'm serious about picking my peck of peppers when they come into the grocery store produce section and start going through the brussel sprouts. So we are in the same space at the same time.

The boy looks over at me and points. His dad's eyes slide over to me then back to his son. "What?" he asks.

I am curious too.

"Am I going to, am I going to ..." the kid pauses.

"What, go ahead ..." Dad encourages.

"Am I going to swell up like that?" the kid finishes. Dad looks at him mortified, knowing that he's spoken loud enough for me to hear.

I'm besotted with giggles. I think it's really, really, really funny. Then I cave in and start to laugh. This brings Joe back quickly. I'm not a laugher. I'm a smiler but not a laugher. I can't even tell Joe what the kid said.

Father looks at me and says, "Sorry."

I said, gulping for air, "No need, that was funny."

Then I looked at the kid and said, "I grew up to be me, you will grow up to be you. Because we are in wheelchairs doesn't mean we become each other."

He looked relieved.

Then for a few mintues we all just chatted. The kid wants to be a scientist, he said, because he likes to make things explode. Dad tells a funny story about a firecraker in a pumpkin pie and a really upset mother. We all laugh again. Then, converstation done, I return to picking peppers, they return to getting brussel sprouts.

I roll by and say goodbye to the kid.

I hear father say, loud enough for me to hear, "You could do worse than growing up to be like him."

Nicest thing anyone has ever said about me.

Bar none.

Hope

It's Friday morning of a tough week. I dragged myself out of bed this morning, plopped myself down in front of the computer and called up blogger. I've been here for almost 10 minutes staring out the window. There's something wrong with having to go to work every day. There's something wrong with having to paste on a smile and earning my daily multigrain, low-fat, high fiber bread. Normally, when things are like this I reach down into the slop pail I keep behind my heart and pull out some hope. Give me a second ... OK ... here's what I dragged out today.

1) I hope that it will make just a tiny bit of difference in the grand scheme of things that I go into the office today - I'm meeting with the abuse prevention team, the self advocacy team and the relationship training team. So I suspect it might.

2) I hope that that guy with Down Syndrome with the huge grin will be there when I get in in the morning. He never says 'hi' but he waves and his eyes twinkle and there's something about him I really like.

3) I hope that I can avoid stepping in political shit for a whole day, working with people with disabilities is fun and rewarding, working with people who work with people with disabilities is fraught with danger.

4) I hope that on the drive down there Joe doesn't say, "Did I tell you about ..." because after 38 years, he has.

5) I hope that when we leave work and go shopping, I go the whole day without hearing the word 'r*tard' even once.

6) I hope that the woman at Tim Horton's who looks like her face could turn you to stone, cracks today and smiles. We've had a contest for over a year about who could make her smile. I hope I win and I hope her faces cracks but does not break.

7) I hope that I get a chance on the way home to get out of the car and practice more with my new wheelchair. I sit a little differently in it and I'm still learning the best push strokes. I'm thinking of excuses to go shopping.

8) I hope that our neighbour, the kind of weird one, isn't out front staring at us disapprovingly as we leave like she does most mornings.

9) I hope I have time for one silly internet search today. Like yesterday I tried to find the words for the song 'up on cripple creek' ... because that's where I was yesterday.

10) I hope I manage to be nice most of the time, thoughtful come of the time and kind all the time.

OK, I've put the pail back and now it's time to haul butt into the shower, into clothing, into car and go. Here's an eleventh ... one just for you ...

11) I hope that you have a day filled with hope too ...

So There

A few months ago I wrote about getting a new wheelchair. I did but it didn't fit me properly. I know what you are thinking. You're picturing my big bottom squished into a tiny chair. No sir, the problem was that the chair was too big. It was huge. Like a couch with wheels. It wouldn't fit through any door anywhere. Odd thing was, they didn't want it back. I think they were just really pleased to get rid of it. So I use it here as a comfy chair to sit in, it's perfect for getting around the kitchen when I'm cooking because it's so high. But I really needed another chair.

I know, I know, I know I'm fat. But let me tell you shopping for a chair when you weigh more than Barbie isn't fun. I almost gave up when we went to a wheelchair store here in Barrie and the woman kept going on, loudly, about my weight. Not a person in the store couldn't hear her. There I was sitting in my chair, wheeling myself around, and she was gumming on and on about my weight. I told her that I just wanted a chair that was similar to the one that I was in and that would be fine. Clearly my weight didn't stop me from using a chair. I'd sign a waiver if necessary releasing them from any warranty that came with the chair. Not good enough, she called the manager who came over and asked me to tell him my 'exact weight please'. I told him that I just wanted to buy a chair. Several others shopping in the store came over to listen to the discussion about my weight and perhaps hear how much the fat boy weighed. We left. I discover over and over again that I have no personal privacy, or dignity, or boundaries when recieving service from those in the disability industry. I assert boundaries and demand privacy and I'm treated like a truculent child.

So, forget people, I went searching on the net for the perfect chair. Oh and I found it. Exactly what I needed. I talked with the Canadian distributer and everything looked good. They couldn't sell it to me direct, so they gave me the names of people, locally, who I could special order the chair through. Finally, the chair was ordered. When the call came in yesterday that the chair was here, I was bubbling with excitement. Joe dropped me off at work and then headed up to get the chair.

Finally I sat down in my new wheelchair. It's perfect. I loved my old chair which has travelled halfway across the world with me, but this new chair is incredible. It glides. It's just a tad taller so I get out of it without need of assistance. It's footrests are higher so that I won't be bending the struts on cobblestones. But best of all, it rolls quite well on carpet.

So, I'm set, I've a new set of wheels.

I've been told, a few times over the course of my lifetime, that I have a difficult personality. That I don't bend enough, am not flexible enough, am too determined and too ready for a fight.

Well, thank God for that - I've got a chair.

And a warranty.

Ha!

OK, then

"She doesn't think of herself as disabled," hostile stare at me, "and that's as it should be."

OK.

I was told.

We were all set up to do a consultation when the parent who arrived informed us all the ways that his foster daughter wasn't appropriate for our service. No behaviour problem. No sexuality problem. No intellectual disability.

Yep, he's right, that puts her right out of our mandate. All she was, he said, was a kid with a physical disability who had questions about sexuality. I told him that I could give him a list of resources for kids with physical disabilities and he looked at me and said, "I think I could find those as quickly as you could."

OK, why the hostility? I understand that this was a wasted trip for him - we don't provide the service he asking for, but we've apologized, offered other assistance and he won't stop. Then he figures we need to hear her history of coming into care with him as a foster father. Sure. Why not. I love a story.

But it wasn't much of one. She came into care. He is a miraculous kind of foster dad who brought her out of herself and now you wouldn't believe she's the same girl. We smiled and nodded. He mentioned that she liked looking things up on the web.

I thought, "Why not" and told him to get her to take a look at the OUCH website. I know I write for OUCH and an biased but I think it's one of the best disability sites on the web. I told him it was about disability pride and disability community and she'd probably have fun with their quizzes and their humour.

He leveled his gaze at me and hit me with, "She doesn't see herself as disabled ..." Followed by an icy cold stare and "which is as it should be."

OK, then.

I glanced out and saw her. A nice looking 15 year old girl in a wheelchair. We hadn't met her because he hadn't allowed it. He wanted to check us out first, our service was found wanting, and now they were leaving.

OK, then.

Their early departure allowed me almost 40 minutes to sit back, close my eyes, and sream at him, have the outright fight and debate with him, ultimately tell him that I thought he was a smug over controlling guy who needed to get his own act together before he guided his child in any direction at all.

OK, then.

That done. I thought about it. Have I really gone off the rails? Why is it 'as it should be' that a person with a disability doesn't see themselves as having a disability. Particularly when they do. My friend Susan sees herself as a woman - I know because she was there with me and I asked her. Why is it good and healthy and desireable for everyone else to see themselves as who they are. Gay people see themselves as gay. Black people see themselves as black. Even Shriners see themselves and Shriners for heaven's sake. Self acceptance is part of the package for everyone else and self denial is what's left on the plate for those with disabiliteis.

What would be wrong with a 15 year old girl thinking about herself as a disabled girl? Oh and don't go giving me that 'person first language stuff'. I've never heard anyone say about themselves to themselves, I am a person who's a woman, I'm a person who's gay, I'm a person who's black, I'm a person who's Christian. Disabilities it seems has to go second, after person, because somehow the personhood is supposed to lessen the impact of the word disabled.

Warning, don't ever call me 'a person who's disabled' cause I'm a disabled guy. That's it.

Anyways, back to ranting here. I think it's neglect to have a disabled child and to parent them in such a manner that they spend a lot of time and energy into denying disability ...

"I'm just like you." This doesn't sound like a statement of pride it's like begging you to not notice or comment on my disability so you in your superiority and pity can let me go about the day with my delusion intact and you have your vaulted status reinforced.

Of course people with disabilities are different. Different doesn't mean LESS THAN it just mean difference. And the disability community isn't a step down ... it can't be ... we're not good with steps.

I shook myself, I always win the arguments I have with others in my own head so I felt cleansed by my indignation.

OK, then ... NEXT.