Monday, December 31, 2007

For Bendy Girl

I had planned a very different blog today, it's the last day of the year and I wanted to write something about new year's, resolutions - a fairly typical post for this kind of year. But then I got a very thoughtful comment from Bendy Girl on a post called 'Us' that I wrote a few days ago. It was a critical post, not written out of anger but in deep thoughtfullness. I have a 'way' of dealing with criticism. My 12 step process.

1) Anger: Who the hell does she think she is?

2) Self Pity: Don't people realize that I really put myself out there and can be hurt by what they say.

3) Decision: That's it, I'm never writing the blog again.

4) Anger 2: What have I ever done to her?

5) Defensiveness: Well that's the way the world is for me, I'm free to comment on MY world an way I want.

6) Denial: It's just a bit of criticism, who cares?

I'm in a huff, blood is pumping, adrenaline rushing. Then an hour or two later when I'm thinking of something else and the comment pops back into my mind ...

7) Realization: You know she kind of has a point.

8) Minicapitulation: OK, well I'll think through what she has to say.

9) Capitulation: Actually she has a point.

10) Self Immolation: You are a worthless piece of poop that needs to be careful about what he writes.

11) Self Degredation: You have no talent to write, why bother.

12) Self Evaluation: You aren't defined by this comment, you wanted people to talk to you, and you've probably learned from this, it's a good thing.

So, I'm a little tender about getting criticism - who isn't? Actually, I'm ok with criticism that I don't agree with (I just blow that off ) but with criticism that I need to hear in order to grow, that's the stuff I have trouble with. You'd have to read her whole comment but she begins with

"I'm glad that you have all the equipment and access requirements around you to make life the way it should be for all those with disabilities, but for many of us, that is an unimaginable luxury. "

And ends with the fact I need to consider 'privilege' in my writing.

The post had me describing my house as being set up for me, thus reducing my experiece of disability at home, Bendy Girl, in her comment gives a dramatic description of how that is so not the case for her. Well, in fact, we bought a home with a ramp, it has a walk in shower. But as for the rest, we've adapted. We found that the kitchen wheelchair fits well under the counter and I can help cook from there. I've got a kitchen wheelchair because someone who had a 'fat chair' no longer needed it and gave it to me. It's huge, it's comfortable, I took it eagerly. I have a wheelchair in my bathroom because my old wheelchair was destroyed by travel and I use it to get around the bathroom. My toilet is low with no bars, but it is positioned right by the shower and we've put a tall stool beside it so I can use the stall and the stool as grab bars. We really need a tall toilet and grab bars but haven't been able to afford them.

There are other inconvienices in my home but they are more minor irritants than they are major impediments. I haven't written about my frustrations about being disabled at home because frankly I don't want to. This is my home, for better or worse, it's my home. Both Joe and I recognize that we are going to need to sell this house and move to Toronto, living in the country in a wheelchair is incredibly limiting. But I've compartmentalized that. I'm good at not thinking about things, tucking them away, bringing them out when need be.

Other commenters have mentioned that I have a fairly 'sunny' disposition to disability and a fairly optimistic personality. Well that's true. When the glass is half full ... My God A Bird Could have a Bath in There!! Whoo Hooo. Part of this is the result that I am (and I'm not going on about this) a child of abuse. And every day as an adult that I am not hit, sworn at, wished dead, burned or otherwise scarred - that's a very, very, good day. I was judged to be almost ineducable at one point in my schooling, the bar was set low for me. I amaze myself every day by putting on matching socks. Out of all that could come bitterness. Then I met Joe. I don't know how many readers know him, but Joe laughs at everything ... that's everything. When we met it was like a dark shadow walking into bright light, I didn't disappear, I just discovered that I was not the shadow, I was the person casting the shadow. I didn't know that relationships - that people - could be safe. So under Joe's direct influence I moved from despair to hope. My world view changed. I became aware that life could change, that it was possible to be safe, create safe places.

But as to Bendy Girl's comment, she was right, I do present the world a little unrealistically because of how I focus my writing. I want people to read about the joys of living with a disability as part of a counter attack on 'you're all so miserable, wouldn't ya wish to be dead?' crap that you get from so many. I didn't want to feed into that kind of stereotype yet I want to write about the challenges as well. I clearly didn't do a good job on that post, and I think, honestly I've made that mistake before.

So Bendy Girl, I thank you for your comment, I've taken it seriously, and I hope it will affect my writing, will help me grow deeper in my analysis. But I warn you, I am an optimist, I do believe that the world can change if challenged, I do beleive that disability is just another way of being and should be respected as such - none of that will change. But my expression about the real world frustrations will attempt to be a bit more accurate.

This is not a resolution, it's a realization -- and for me, realizations are always the greater prod to change.

Sunday, December 30, 2007

Donna's Conversation

Damn you, Donna!

Just before going on Christmas break, I was having a conversation with Donna at work. She was telling me about an employee at Vita who has being doing well in our employ. She had come to the interview for the job well prepared and had impressed Donna throughout the interview with her perceptions and her attitude. At the end of the interview the typical 'last question' was asked. "Now do you have any questions for us?"

Here is where you expect to get questions about salary, about hours, about benefits, if you get any questions at all. This young woman looked thoughtful and then said, "Yes, I do have a question." Donna got ready in her mind the facts about our benefit package and the rest. But the woman threw her a curve, "Tell me why I should want to work at Vita."

As always my conversation with Donna was interupted at this point. I've yet to finish a conversation with her in fact. So I don't know what Donna said in response to this woman. But her question has been bouncing around in my brain over the holidays. I think it's a brilliant question. It is clearly understood why one would want to work in the field of disability, there are so many inherant rewards ... buy why for a particular agency. Why for me as a supervisor? Why for you as a Director? Why for us as a corporate entity?

Even though this is 'holiday time' this question has drawn me back to the computer a number of times. I've sat here and sketched out why I think someone would want to work for Vita, why they would want to give us their time, their committment, their patience. It's a very big question and one I've never asked myself in any serious way.

Yet I think it's important that we who are in positions of power within organizations, step back and ask ourselves what kind of organization are we. Surely we all have the same kind of vision for services to people with disabilties ... but who are we as employers, as managers, as directors? We know the damaging effect of heirarchies on the lives of those with disabilities, but what about the heirarchy of the agency - what does power do to us in relation, not to those in care but those who provide care.

In the dim recesses of my memory, I remember talking to a mother of a guy with a disability who was moving into a group home in an agency where I was the behaviour therapist. In the absence of the supervisor, I was asked to step in and give her a tour of the home and talk about the services provided and answer her questions as well as I could. One of her questions was, "Are the staff here happy in their jobs ...." and I blathered on and on about how wonderful the staff were, how committed they were. It was all true. But as I've thought about Donna's little story, I've remembered this conversation in a new light. This was a very bright mom who wanted to know if her child was going to be served by disgrunted employees of a disrespectful agency. I now understand the look of frustration in her eyes as I answered a question she didn't ask and didn't answer the question she did. (I have a habit of this.)

So, this is a discussion that I'd like to initiate next year. I'd like us to really think about this. Because that staff, that mom, are on to something big. Respecting those in care while disrespecting those who provide care can only lead to disaster.

So, Donna, if you are reading this, I'd like to know what you said. I'd like to talk about serving those who care as well as serving those who need care.

Maybe a change or two is needed.

Saturday, December 29, 2007


(I've actually been worried about writing my blog today. Once again, its set in the food court of a mall near here. You are going to think I live in malls and food courts. Winter hit hard this year and we've got two or three feet of snow on the ground. Everywhere we go we have to deal with snow and ice. Last year, and indeed the year before, we had little snow through the holiday season. I could go anywhere and didn't have to think about getting around in my wheelchair. This year with all the snow, the world is so much more restricted. My wheels slip, get wet and become impossible to push, my hands freeze. So, when we go out, like I like to every day, we've been going to the mall. There's a drop off place where I can get into the mall without my tires getting wet and in a few minutes my wheels have warmed up. This all means I've become a mall rat, already recognizable to some of the other regulars, but hey, this is not the story. The story takes place at the food court.)

We were, together, 5 of us. Mike was, like me, getting a falafel pita, Joe was over getting a vegetarian Thai soup and Joseph was at Taco Bell getting his meal. Ruby tagged along with Joe as Mike helped me. He carried the tray and I was pushing over to the disabled table. There were two women sitting there along with a small child. It bothers me that people take these tables, the blue wheelchair guy is clearly on the table. I like these tables, they are on the edge so easier to get into, they are slightly taller so a more comfortable fit for a wheelchair user. I said to Mike in a loudish voice, "The wheelchair table is around here somewhere." They actually pushed burger wrapping over the little symbol and kept eating!

Joe came and saw that the table next to the disabled take was just coming free. He suggested we take this one. This means I'm going to be stuck out in the aisle rather than tucked into a table. I glared over at one of the women, who relented and said, "Go ahead take this one, we'll move to that one." I'm mad now so I just say, "No, no, we'll sit here, we wouldn't want to disturb your lunch." So I sat with my angry back to them and we could all hear them suck their food back quicker than what was good for their health. Then they were gone.

Immediately upon their leaving, two other women sat down at the table and congratluated themselves on finding a table right away. I didn't say anything, I resolved to just let it go. I knew if I did I'd embarass Joseph, who as a teen boy has adaped to my disability with remarkable ease. Adults always judge themselves differently when being looked at by teenagers, I think. But then these two women are joined by the husband of one of them, he looks at the symbol on the table and says, "We can't sit here, this is reserved for people with disabilities," then he noticed that the table on the other side of us was free now. He indicated for them to join him, and the food he was carrying, at that table.

The women refused to move and became increasingly angry at him not just joining them at the table. He was steadfast, "That's the disabled table," he kept telling them. One woman turned to the other, "He can be such a stubborn asshole sometimes." I figured the speaker to be the wife. I've noticed that when married one feels free to use the harshest words to describe the marriage partner. It also pissed me off. I gave Joe a look, "I'm joining in right now."

I turned and politely said, "He's right, these tables are for those of us with disabilities. The reason that I'm sitting here at this table, sticking out into the aisle, making everyone squeeze around me is that other people like you - thoughtless, ignorant - sat at that table before you. You can sit there if you want, I'm not going to kick up a fuss, I just want you to know that your husband is right and you are lucky to be with someone who considers the needs of others before his own. Maybe if you open your eyes, you can learn from him."

Then I went back to my falafel and my friends. They sat a minute stunned, then got up and moved tables. All I heard was the husband saying, "What did he say to you?" and one of the women answering, "Nothing, he didn't say anything."

On our way out of the mall Joseph was pushing the wheelchair. He'd asked to help but he likes doing it because the likes to bend over and pretend he's pushing someone three times my weight - it's a funny act he puts on but I wish he wouldn't do it. But I say nothing, he's only kidding around. When we got to the door he said, "I think it's good that you told those women to move. I never speak up because I'm too shy. But I think it's good that you can."

Now we have ourselves a conversation about assertion and how it's important to know how and when to speak up to others. He's 13, these are big concepts. He's a bit shy, these are frightening concepts. But I'm glad we had the talk. I know he's thinking about it. Maybe someone in a wheelchair can be a roll model after all.

Friday, December 28, 2007


The kid wouldn't stop. Just wouldn't stop. We could hear him from a long way off. The wail got louder as they got closer to the food court. Rounding the corner we saw a mother and child, she harried and and the end of her rope, the child resolute in the tantrum. You could feel everyone at the food court tense. "Don't sit next to me, don't sit next to me, don't sit next to me ..." the mantra of the crowd.

She collapsed in a chair not far from us, the child paused for a second and then redoubled his efforts. You could see that she was determined not to give into the tantrum and she did everything that a behaviourist would have recommended. She calmly said to the child that when he was quiet for two minutes, they would get a snack. Then she looked away. He was restrained by his stroller - if he hadn't he'd have been throwing himself all over the floor. "I can't believe she can't control her own child, I can't believe she can't control her own child ..." the new mantra as disapproving looks shot between those at tables other than hers.

Out of the blue a young woman with Down Syndrome appeared, walking steadily towards the woman who was still steadfastly ignorning the child. The woman with Down Syndrome may have been in her late teens, maybe early twenties, in her hands was a bottle of water and a fresh baked cookie from one of the food court vendors. She got to the table, having the attention of everyone in the food court. "You look like you need this," she said while giving the woman the water and the cookie.

Gratefulness filled the mother's eyes and she took off the top of the bottle and took a healthy drink. "Thankyou so much," she said to the woman who had given her this small gift. "It's no problem, I work in a day care center, I know what it's like when a child gets cranky like that." "So do we ... So do we ... So do we ..." suddenly everyone in the food court was on Mother's side, knowing what it's like to have a child or care for a child that's having a tough moment.

A single act of kindness changed everything. Now people were chatting with the mother, letting her know that we all understood. Mom, fully distracted from a tantrumming child, relaxed. In only a few seconds the child was distracted by his mother's distraction and, to be honest, the cookie. True to her word, when he was quiet for a few minutes she shared her cookie with him.

The woman with Down Syndrome waved at her on her way out of the food court.

I was left with one question.

What the hell is in that extra chromosone anyways?

Thursday, December 27, 2007


There are times I hate my fellow cripples. I'm sorry, it's true. I especially hate that every other wheelchair using, accessible room needing, parking space filler upper, has different needs than me. That those who design for the great 'us' who are disabled, are forced to think about various needs of a range of disabilities. Thus I'm stuck with hotel rooms, disabled bathrooms, ramps that may be wonderful for others but don't cut it for me.

Like how do they grow crips in England? Most of the hotel rooms I stay in don't have the walk in showers. Most have tubs that have bars. The bars are so low as to be useless when you want to get in and shower, but odder still, to get into the tub you've got to step up a huge step into it. What's with that? And with no grab bar, because disabled people all need grab bars just above the side of the tub (for what purpose?) and none of us need one on the wall where we can hold on as we hoist up. Who are these disabled people? How can you be disabled and get into a tub that's 2 feet off the floor?

Now I appreciate that there are even such things as 'wheelchair friendly' rooms and 'accessible' bathrooms, I really truly do, and they really do help make my experience in the world easier. I can't imagine what it would be like if some poor forgotten sod hadn't invented the ramp.

But what's cool about being home is that I didn't have to think about generic cripples when adapting the place. It's was really all about me. We bought a home that was accessible (ramped) because we wanted a place where friends in wheelchairs could visit. There was a decision that paid off in spades. Think of others, benefit yourself. I've got a kitchen wheelchair, and my spot at the counter where I help prepare meals. I've got a bathroom chair where I can sit to shave and make myself geeeorgous. I've got the front room set up so that I can watch tv from a tall chair if my legs are feeling week, or from the couch if I'm having a good day. This 'social model' of disability is cool because, after being home for a few days my status as a disabled person begins to recede in my mind. I just live here.

Yesterday Mike, Joseph (the 13 year old version) and Ruby (15 months) arrived for our Boxing Day Bonanza. They came in with fresh parcels and we had their stuff packed away under the tree. A hello or two was done and then we attacked the gifts. Having a 13 year old involved in this meant that organization went out the window. Joe and I open our gifts one and a time, chat about where we bought it, who the clerk was, and the thought that went into the present. It delays the gratification. Joseph is 13 he doesn't delay anything. Paper was ripped off and the word 'awesome' was heard from under a pile of paper a couple of times.

As we all made dinner and got the evening going, I realized that more than my house has been made accessible. Everyone there had made tiny adjustments for being with someone who sat and rolled more than stood and walked. It was natural, there was no embarrassed fumbling or frustrated glances. It was just a time of us adjusting to each other. Everyone had different needs and different things they wanted to get out of the evening. Baby Ruby just wanted to be part of everything the big people did, Joseph wanted a new respect as an almost adult definately not child, Mike wanted brother and sister (who live separately) to begin to know each other. Joe wanted everyone to like their presents and to feel at home. It was nice to be in a home, adapted for me, but adapting for others. Having my own needs not trumping others needs because I was in a chair.

I think that's called reciprocity. It's sometimes hard as a disabled person to get into reciprocal relationships as the disability seems to call forth needs in others to subvert their will, their wants for you. "Here let me get that for you," "No, no, you just sit there, I'll do it," it is tempting to give in to the subservient position because it's an easy role to play. I see so many people with intellectual disabilities who've been trained to take, been taught they've got nothing to give, been reduced to wants and needs - the burden status. I like this reciprocity thing, I like being seen as powerful enough, and interesting enough, and demanding enough, to be an equal part of the social environment. "I can get that myself thank you, now may I get one for you too?"

Reciprocity. It's a model of human interaction that really works. Research has shown that reciprocity is the single most important social skill for the maintenance of human relationships. It's about giving back. Considering others. Adapting, and ramping the world for others - ain't that a kick in the rubber parts.

Yep, it works for me. It works for them. And last night it was what makes 'us' us.

Wednesday, December 26, 2007

Day Off

"You have a new email from Manuela," so says the little message thing that pops up on the bottom of my screen. "Oh, my," I think, realizing that the boss wouldn't be writing on boxing day if it wasn't important. I rush to the email and it says "Went to your blog this morning and nothing was there, are you OK?" Well, as it happened just before I got the email I was staring at a blank screen trying to think what to write and wondering if it would be OK to take the day off from blogging. What the heck, it's the holidays.

But this blog thing is an odd one isn't it? It's a way to connect with other lives. When I was overseas I had a woman, a regular blog reader, come up and give me a hug in thanks for all the stuff she'd read on the blog, her "daily ritual" and at that same event I met a guy with a disability who had just made a movie about his life and he titled the movie based on something said by the self advocates at Essex and that I had recorded here on my blog.

In a couple of months I have a date to meet a fellow blogger, Elizabeth, who writes the blog 'Screw Bronze' which is a favourite of mine. She has blistering intelligence and a fierce wit. Her description of how, for her as a lesbian, wheelchair user who's house is full of skulls, Christianity, or her father's explanation of Christ, shaped her life is wonderfully faithfull and incredibly irreverent at the same time - a style of writing that she has mastered. So we've chatted back and forth between our blogs and are now arranging to meet. Strangers not long ago, sharing a bevvy in the not too distant future. Coolio. (Though I can't imagine what Elizabeth is going to make of someone who can say, without blushing, Coolio.)

Out of the blue a month or two ago I got a comment from neice Shannon and then bam a letter from her brother. I haven't talked to these kids for years. Not that we were fighting, we just lived in very different worlds. Now I'm feeling a little more attached to the world of family and was amazed to find, in Shannon's writing the same incredible charm that I'd noticed she had as a child. Her blog about animal's kneeling on Christmas eve inspired me to remember the Christmas plays I used to write for St. Paul's church. Mark too writes an wonderful letter and is obviously fond of words. He mentioned my "Walking on Robson" blog in a letter and I grinned at the idea of sharing that moment with him and not even knowing.

On my birthday someone from England wrote and said that 'Chewing the Fat' and my writing had helped them develop an acceptance of their use of a wheelchair, or the transition from cane to chair. That they had discovered an increased mobility and a kind of defiance for the reaction of onlookers. They couldn't have given me a bigger birthday present. That's exactly why I started Chewing the Fat. I wanted to bring a stinging slap to those who 'oh poor you in your wheelchair.' Affecting someone like that is very, very humbling.

Then my friend Joan, who is still my friend even if we only talk on birthdays and major holidays, tells me that she drops into Chewing the Fat just to stay connected. She's busy in her world, I'm busy in mine. But we share memories of bizarre times we spent together - like the night that she, a straight woman, won the Arnold Scwartzenegger (can't spell it and can't be bothered to find out how) look-a-like contest in a gay bar. We've known each other since we met in university. She's quite a lot older than me, 14 months I think, and I like her presence in my life as a, kind of, elder.

It's an odd kind of connection, somewhat real, somewhat not, here in the world of blogging. A kind of intimacy happens because we human beings have a drive for intimacy and connection. We need to feel that we matter, we need to let others know they matter. I'm going to get slaughtered for this, but, many people with intellectual disabilities have a knack for intimacy, a skill at seeing beyond the obvious, "You're not fat, you're Dave," was once said to me by a chubbly little girl with Down Syndrome.

So, besides all this, besides Manuela's concern for my health (by the by Manuela, I can't send you an email on your other email address because I only have the Vita one) I'm going to take the day off today. I'll blog again tomorrow.

Tuesday, December 25, 2007


The house is quiet. Outside my window I can only see the Christmas lights that run along the edge of the roof. Our neighbours all have their lights off. Darkness. Everywhere darkness. And deep deep quiet. I complain every afternoon that I'm really tired and I remind myself every time that I get up really early every day. And I do, I get tired easily, I could sleep longer, if I tried. But I enjoy this quiet. I can write a letter, like I did this morning, write my blog, like I'm doing now. No one is moving in the house. No one is going to call me. It's just quiet.

There was a time I didn't understand quiet. When in the car with my parents growing up they never, ever, put on the radio. We'd nag them too but when my mother's ears went red we stopped. I don't think she knows to this day that she had these 'early warning' beacons that let us know when explosion was on the horizons. So we simply stopped asking. Then with the purchase of our own car, music poured out of the speakers. Until, maybe, 5 years ago. The music stopped. We'll turn the radio on to hear the news, the traffic and the weather, then shut it off when the music begins. 'Who needs that noise?'

Now Joe and I can drive across an entire province without once turning on the radio, or even without much saying much. We just enjoy the quiet and being out of the whirlwind of work and people.


I like it.

Being in the hospital learning that I was going to be in a wheelchair for, if not the rest of my life then for a very long time, I was left in quiet. The doctor told me with little preparation, though I'd already figured it out. They could have told me when Joe was there so I'd have someone to talk too afterward. But, in the end, I'm glad I had quiet. I had no distractions. I didn't have to worry about Joe worrying about me. For those moments it was only me that knew. And I'm glad those moments were quiet. Because it's then that I can find my true voice. It's aways been faint - It asked me - 'How are you different?" and I quickly answered, 'I'm not different at all, I'm just in a wheelchair.' My real voice is unrelenting when it begins a subject, 'You will be different, what will that difference mean to you ... that's what will determine everything about tomorrow.' My real voice sometimes sounds like Yoda.


I like it.

Christmas morning quiet is about something different though, it's like wanting to hear the hush of the world, for a moment, at peace. The world around me, outside my window, is hushed. It's like a world waiting ... to see, if the difference made today will transform the world tomorrow. That is the hope of Christmas. To me, at least.

Monday, December 24, 2007


It became the first of many. The pastor at our church one referred to me, not kindly, as 'endlessly creative'. The Sunday School had come to me to ask if I'd consider writing a play for their Christmas pagent. I didn't hesitate for a second. This began a tradition of the Sunday School having an original play for four or five years running. As a result the congregatin watched as the pulpit was turned into a space ship and they watched as aliens from Mars came and asked the children questions about Christmas and how the Children tried to make the Martians understand that Christmas was about the baby Jesus. It was fun being given this opportunity. But how do you top Martians and space ships?

The next years I borrowed from myth. Somewhere along my journey of growing up, I was struck by the myth that animals can talk - once a year - on Christmas eve. As a child I tried to imagine what the animals at the stable would say. Now here I was an adult getting the opportunity to write the words. I finished the play, gave it to the Sunday School teacher, and waited. She called me a day or two before the performance and said, "The kids are really into this play this year. They loved the spaceship and aliens one but this one is very special. They even have asked the minister if they could bring a real dog to add to the atmosphere. I think you are going to be pleased she said.

Pagent day and we had a big crowd. I wrote for the local paper, a monthly column on faith issues, and I'd mentioned this play in my column ... several had come to check it out. It began with the animals slowly coming to speach and usng that speach to complain, cow telling horse "For all these years you've been crowding me here' pig telling dog, "You've gotta do something about that breath of yours." Then the horse saying, "We're talking and all we are doing is complaining, shouldn't we really talk to each other." At that point the animals are asked if it would be OK for a couple to spend the night. She is pregnant.

Then they all go on about why they don't want to help humans. Humans use them, disrespect them, why should they do anything for the humans. "I'm going to be bacon in a few weeks and they want my bed!" "They ride on my back all day and they expect me to give up what moments of peace I do have." Oh the animals weren't all that fond of the idea. Mary and Joseph and their trusty dog (they'd have had a dog) are making their way down the aisle of the church towards the stable as the animals protest and complain.

Something happened then. The complaints started to become adlibbed. I hadn't written enough dialogue, Mary and Joseph (and trusty dog) we only halfway down the aisle. So the kids filled in. The tenor changed. parents sat in the audience as their children said lines like, "They don't hug me enough ... They make me feel like I'm always in the way ... I get frightened when I have to wait alone at home after school ... These children weren't acting now. They had been given voices and were using them. Parents sat rivitted, I saw no anger on any face, I saw love and concern, but mostly I saw realization. Their kids had been given the power of speach.

Finally Mary and Joseph arrived at the stable and the words became mine again. Many asked gently if the animals could spare a bit of room. They all backed up and the holy family huddled around and the animals surrounded them with and offered them warmth and protection. By morning they'd lost their speech again.

It had gone very very well. At coffee everyone was talking about the play, no one was talking about the moment that children got speech. Everyone acted like I'd written the words. I called the Sunday School teacher a day or two later and she told me that all the parents said that they had heard their kids and every one of the families had thanked her for that moment.

For me, it was a moment of enlightenment too. Understanding that having speach isn't the same as being heard. That they call it the 'power of language' for a reason. That those who are powerless have voices too.

As one of the children ad libbed, "And you know the baby Jesus is going to need you to pay attention every now and then."

Amen to that.

Sunday, December 23, 2007

Lion Award Thingy

I wish I knew how to put pictures on my blog. I have no idea. I tried once to put my picture on the side but failed. Even to put the OUCH symbol on my blog I had to get my friend, blog princess, to help. If I could put pictures on the blog, I'd put the picture of the 'Roar of Powerful Words' lion that's given as an award by another blogger for 'powerful writing'. I was given this once before and then again on my birthday by ettina of abnormaldiversity. I went to her blog to see what it's about and apparently I'm supposed to give three bits of advice about writing and then award the 'lion' to others.


Pay attention. I never go out, go to work, go to the bathroom without a story happening. People are interesting, their reactions, their relationships, their way of being - to me being a writer (or playing at being a writer) means being alert to the world, seeing what's hidden in plain view. Almost all of my blog writing is about day to day events, things that just happen. I'll admit it's probably easier for me because I'm different from most others in three ways - differences call forth responses that are fairly easy to note. But I'll bet if you are honest with yourself, you're different from others in at least three ways yourself. Use that. Pay attention. One of my regular readers is a friend of mine who calls moments where she really notices things 'Dave moments' because she is now alert to and alive to what's happening around her. She says she's learned that from me and from my blog. That's a great honour.

Develop boundaries. There are some things that are just mine. There are some things that are just Joe's and mine. These things I won't write about. Having a private garden in your heart where you grow sensitivities, where flowers unique thoughts - gives you the 'spices' you need for your writing, this is what makes your writing uniquely your own. I care for my private garden, no one's feet has ever trampled therein, I visit there daily, I take comfort there, I nurse hurts there, it's the still, quiet place where I talk to God. Its not for public view. That boundary allows me to share much, much more than I would - because I know what's sacred and be damned with all the rest.

Keep focus. I decided that this blog would be about disability. Someone 'joked' (I put that in quotation marks because it was a 'joke' that hid a 'criticism') that my blog and my life was 'all disability, all the time'. While I think that's an unfair criticism there may be some truth in it. Chewing the Fat was set up to be about disability so that's what I write about. I work in the disability field, so that's what I think about, I have a disability so that's what I live. I'm guessing that most people who read Chewing the Fat do so because of that focus - they know if they come here I'm going to be banging on about disability. I'm not writing for a general readership - I don't have those skills or that broad an emotional palate. I think focus helps.

Now I'm supposed to award this to five others. I'm not going to do that. It's not because I don't recognize powerful writing in others, it's because all the blogs I read, I read because of the powerful writing. Having been a child never picked for a team, I can't pick one and leave out another. So, I'm awarding the award to anyone who wants to do this. It's kind of fun to stop and think about your writing - so if you want it ... the Roar for Powerful Words award is yours. If you want the picture, go to and find it there under the blog entery entitled 'Lion Award Thingy'. I don't know how to get it from there to you but I'm assuming most of you know how to do that.

(Please don't write me back with detailed instructions about how to put pictures on my blog, I'll read what you say but after step three I'll start crying. I don't want to cry. I need someone to show me, not explain it to me.)

Saturday, December 22, 2007


I had clearly been waiting.

We were parked at the Eaton Center in Toronto and were waiting for the elevators that would take us to the shopping arcade below. Several elevators had gone by, chocka block full, room enough for other two footers but not enough for me in my chair. Finally an empty elevator arrived and, of course, it was the longest distance away. I turned the chair and started to push but I was engulfed by people rushing past me to the elevator.

Everyone of those people had come after me, they all knew I was there first, one woman slammed into my chair getting by, another's purse hit me square in the face as she raced past. We got to a full elevator. They all had the crazed face of victory on them. As the doors began to close I simply raised my arms and said, "Tiny Tim hates all of you."

Their faces fell and eyes glanced away from mine as I drilled my gaze into theirs.

I mean it's Christmas for heavens sake.


You know ... good will ... love of fellow men ... birth of the babe ...

Finally we get down to the shopping mall and it's teaming with people, scampering around with packages and parcels, ribbon and wrapping, bottles and boxes. If you squinted everyone would look like the Who's down in Whoville, if you closed your eyes you could imagine the Grinch complaining about the noise, noise, noise.

But in fact I loved it. I managed to finish my Christmas shopping and Joe managed to start his. We live together but in separate worlds sometimes.

On my way out of the mall we were going through the children's section of the bookstore towards the exit that would lead to the parking garage. I saw one of the woman who had rushed by me. She was clearly upset upon seeing me. I was then surrounded with Joe and Mike and Merrissa and baby Ruby riding on my chest.

She mouthed the words, "I'm sorry."

For a second I considered giving her the finger. Letting her know that an apology doesn't make up for a purse in the head and a push aside.

But it's Christmas.

So I smiled and mouthed the words, "Merry Christmas."

It was harder to do than you'd imagine.

I'm sorry to say.

Friday, December 21, 2007


Today is my birthday. I'm now 55 years old. The field I work in is relitively young - in my office I'm by far the oldest person there. When talking, as I did yesterday, with someone and describing myself as a morning person - I go to bed around 8 but I'm up at around 3 ... hours I kinda like - he looked at me and said, "My mom is like that."

How nice for your Mom. How nice that I remind you of your Mom. I'm so glad you told me.

But for all that, I like getting older. I like the fresh perspectives that I get. I like being surprised more often by the things I notice now. I like how I am less easy to trick and more likely to laugh at the attempt. I like not caring about things that used to worry me and caring about things that I used to hold in contempt.

I like believing that what we do and say makes a real difference.

I like knowing that we each affect each other, we each have to power to do good.

I like feeling that the spirit of goodness can sometimes work through me.

I like understanding, now, that charity can be given without pity.

I like taking responsibility for my actions - and knowing apologies are only the first step.

I like laughing at what would have made me cry before.

I like having the courage to say what I think and the desire to call those who demean others to task.

I like the sudden feeling of smallness and inadequacy and embarrassment when someone thanks me for the effect my work has had on them.

I like being 55 and not feeling done ... not feeling the desire to rest from the mission.

I like wanting to get up and go back at it because there is more to do.

I like the fact that while my body has sagged and my hair abandoned ship and my chin multiplied while my height subtracted - I like that out of this aging, crippled body, comes fresh ideas, brand new purpose, and the capacity to have waking visions of how it can be.

I like the fact that my heart - recycles old hurts into new love - it's been doing that for awhile now.

So, today is my birthday. Lunch with friends - see the doctor - dinner and movie with friends - go to bed early. A nice day looms.

Thursday, December 20, 2007

Her Heart

It was depressing reading. All I did was look up the words "Robert Latimer parole" on Google and I found hundreds of entries. One of which was a newspaper article on a website that had the capacity for people to respond. Almost every letter was in support of Latimer and the one's that were 'con' were more about family support and the needs of families who have children with severe disabilities than they were about the murder of a child.

When I was on the road in England I saw a man with a severe disability receive amazing care. The carer with him knew exactly how to position him so that the movement he did have was able to communicate meaning. He chose what he wanted for lunch. It took nearly ten minutes for the choice to be made, but he made it. Deep inside his disability, he lived, had preferences, and she knew how to call him forth - let him free. To casual observers he'd be a bunch of bones and slightly less than human - to those with eyes he was fully human.

The Latimer parole controversy hit while I was overseas and I heard none of it until I got back. An email came into my work address about a 'response' to Latimer and to the public outpouring of support for him. Then I did the search and found that the Canadian public's response - each letter claiming to know Latimer's heart, claiming to empathize with him. What fraudulent, cheap emotion! What disability loathing trash! What blatent prejudice masquarading as compassion!

When I worked in an institution, years and years ago, I met a woman with a profound disability. Few were interested in her, few attempted contact. But I was just out of university, just freshly trained in 'behavioural' approaches. I wanted the challenge of teaching someone with such a significant disability. Imagine my surprise when I discovered that chocolate had the capacity to increase IQ! Patsy learned. She was called out from the land that she lived in to make contact with the world. There was someone home in there. I've never forgotten that fact again.

I took an acting class, one Saturday on the road, during the time of the Latimer trial. It was called, appropriately, 'Acting for Amateurs'. The teacher had us BE a tree, then BE the wind that blew through the branches. Then we had to BE a rock in a brook. Now BE the water that flow over the rock. And we all did as we were told we swayed our branchs, and whoosh the water. It was fun. Then we were asked for suggestions. One woman had love for birds, so we all worked at BEING the bird. I then suggested that we all BE Tracy Latimer. There was silence and discomfort, the teacher then said, "We can BE something that's not there." Excuse me but we were just a frigging rock and we can't BE Tracy Latimer. These are the people who are writing letters - people who can feel compassion for Robert while feeling nothing but pity and loathing at the mere idea of Tracy. Forgive me but I have no difficulty in calling bigots, bigots. Hitler 'sold' the murder of the disabled as compassion, their existance as burdens ... it's a good technique ... clearly still works.

"You don't know what it's like to have a child with a significant disability." No, I don't. But I have cared for them without wishing them dead. I have spent two years in a wheelchair and seen the 'I'd rather be dead than be you' look in the eyes of two footers who fear disability above all else. I have sat in movie theatres and wished normal children dead. Please, don't tell me that if I had a kid with disability I would suddenly understand Latimer's decision to kill his child. Please don't tell me that ultimately Tracy was responsible for her own death, that it was her disability that motivated him. You don't know his heart - neither do I - I don't need to, because it's HER heart that matters.

So, I add my voice to the few that have spoken up against Latimer, against the tidal wave of prejudice that he has called forth.

Thankyou to the Parole Board who asked difficult questions and took a difficult decision.

Wednesday, December 19, 2007

My Boss

Yesterday my boss did something that was an act of complete and utter kindness, an unneccessary but profoundly thoughtful thing to do. I'm not going to tell you what it was she did, because it wasn't about me and it's pretty private. I've sat here and tried to think about how to tell this. I realize I can't. I'm not even going to tell you which boss it was - I have two - because it's really private what I saw.

But I can say that I was really moved. That kindness, unexpected ... that kindness, unnecessary ... that kindness, unaskedfor ... is still profoundly moving. Yet I am in the business of providing acts of kindness - why should it move me still?

I think much of the work we do has the scent of manufactured kindness - kindness bought and paid for - kindness that comes from a job description - kindness that is evaluated on a yearly basis. It's needed that kind of purchased kindness - but it has always had an odd smell. The smell of something not quite fresh.

Over the years I've seen when the "paid to care" have moments of true kindness, when they given generously and spontaneously, because of will rather than because of wages - and tears spring to my eyes each time I see it. Moments when compassion reaches right to the fingertips - when the act is done without the realization of it's meaning, when the act is invisible to the mind but keenly felt by the heart. It's in those moments that soul is revealed.

Somewhere in the Bible, I'm sure, it says something about being kind, or generous, but not for self glory, not for public view, but privately before the eyes of only God. I've heard this preached about and once a preacher mentioned that the only eyes that see are the eyes of those who receive - that we are seen at our most vulnerable when we give, deeply give, because we risk rejection if not of the gift at least of the intent. I didn't really understand what he was saying then, but I think I get it now.


Because my boss did something really kind. And she didn't have to.

Tuesday, December 18, 2007

So This Is Christmas ...

The morning we left for home we got up in our hotel at Heathrow before 5 in the morning. What with the packing, returning the rental car and getting to the airport, we were down in the lobby before 6. The lobby was full of people who were still drinking, there were beer bottles everywhere and people crashed on the couches. It looked like the party had gone on way too, way too long.

One woman, wearing a dress that was probably beautiful worn in the evening but now, in the harsh morning light, simply looked cheap got up and stumbled over to another table where there was a half full beer bottle. She picked it up and continued drinking.

Even to me, who has been known to party, this seemed on the pathetic side of 'PAR ... ty!!" Others were waiting for the Hotel Hopper that shuttles from hotels to airport as I was waiting for Joe to finish loading the car. I started to chat to a guy who was wearing a Canadian flag on his shoulder and it turned out we were both alumni from the University of Victoria - though he graduated in law and though he gradulated in a different century. I saw his eye caught by a guy who works at the hotel coming out of the staff area. I wondered what his reaction would be, I've seen this guy before - he's got Down Syndrome and he works at keeping the lobby clean.

He takes the job seriously.

He rounded the corner and saw the people sprawled about and the beer bottles littered everywhere. He covered his face with his hands and shook his head. Then he pulled his cart dutifully and as he passed us, I said, "Going to be a busy day."

Looking over at me he smiled and sang, "So This is Christmas ..."

We all burst out laughing.

I thought of all this while we were sitting home last night, in front of the Christmas tree, eating and chatting. Mike was up visiting with baby Ruby and she was having a wale of a time running round the house picking up things, throwing them to the floor. Then, tiring, she crawled up onto the chair and gazed at the lights and listened to us talk and laugh.

And I thought ... "So This is Christmas ..."

Monday, December 17, 2007

"Eh, What's That?"

Today is a big day for us. I'm up early due to not be 'into' the North American time zone yet and its too dark out to know what the day holds. We were hit by a huge winter storm yesterday and we stayed in and watch inch after inch after inch fall. At times beautiful. At times frightening. Snow just kept of falling.

Will we get out of the driveway and into the city? That's the question. For me, I'm heading back to work and know I've got lots and lots to catch up on and lots and lots to do. As always my trip meeting others have given me ideas for home - now I have to figure out what's transerrable, what's not. For Joe, however, there is the big medical appointment he's had waiting since we left for England.

Begging, cajoling, nagging, I've been after him to get a hearing test. He has either lost hearing or lost interest in anything much I have to say. Today will tell us that. We both know that hearing is one of those things that make you admit you aren't twenty any more, and we both know that wearing a hearing aid is no big deal. But somehow this is a big deal for Joe and I am, in a gentle kind way of course, making the experience fun by teasing him about it all.

I asked him on the plane on the flight home what he thought the diagnosis was going to be, he said, 'WHAT?" and I was about to repeat myself when he laughed the 'got you' laugh. HA HA Then he said that he figures he's lost hearing but not enough for a hearing aide. Looking at me imploringly he said, "What do you think?" I think he's going to need a hearing aide but I said, "Does it matter?"

"I'm in a wheelchair, you have a hearing aide, big deal."

So today we'll see, if we can get out of our driveway, if Joe's hearing test means we are beginning the inevitable slide which ends as us being dapper elderly gentlemen. Or if that's not possible, a couple of elderly scoundrals who still like it mix it up.

Sunday, December 16, 2007


"They paid me no nevermind," my Grandma used to say when she'd been ignored or taken for granted by someone. That's exactly what I felt yesterday when getting off the plane. There were three of us who needed assistance, me in my wheelchair, an elderly woman for whom the distance was too much and she needed a airport chair, and a woman with an intellectual disability. When I got off the plane and up to the gate, I waited while two 'assistants' showed to help three people. No biggie, there were only two of us who needed pushing, the other woman had no physical disability.

But then. Then. THEN. They all but forced the woman with an intellectual disability into the wheelchair to be pushed. You could see by her face that she didn't want to be pushed, her face first looked confused, then she struggled for a moment to get up but then ... wham ... trained passivity took over and she sat back in the chair. Now they had only two assistants and three people in chairs.

I bitterly complained that they were going to leave me behind and take the other two ... because I had my own chair - a logic I've never understood. I stated that, um, ONE OF US THREE COULD WALK. They looked at me with horror as if I was had a prejudice against those with intellectual disabilities. I looked at her imploringly, 'Speak up, Speak up" I'd seen the look on her face when forced into the chair ... SPEAK UP.

She didn't. She just smiled at me. The 'mask' was on, there was no way she was coming out over this issue.


Over Compliance.


Those are my issues for next year. Those are the traits in people with disabilities that lead to victimization, vulnerability, violence. Enough.



Saturday, December 15, 2007


I think it was my favourite moment of the trip. Today as we drove from Chertsey, a London suburb, to our hotel at Heathrow I did as I aways do at this time each year. Four weeks have flown by we've been in 18 hotels, 18 cities and done 18 lectures. Images fly by, I try to sort through them and make sense of them. Many have been documented on this blog and I'm pleased to hear from home that some of you have taken the trip with me. But now I'm looking for that one moment that I'll take away with me.

The moment ... is about a moment.

It's about a change.

It happened during the first breakfast of the Paradigm conference. We'd taken over the Conference Center in Manchester and the breakfast room filled with people with disabilities, their families, their carers. A few suited types were staying in the hotel and were completely unprepared for the sheer raw diversity of the group who now poured into the restaurant. Two women sat together. I almost giggled as I waited in anticipation for them to look up, to notice, that they were now surrounded by those who were formed different, those who thought differently, those who related with difference.

But they were absorbed in their conversation. They were looking at something that make me think that they were preparing to do some kind of business presentation somewhere. They had an intensity that those who work for money manage - one that I don't really understand. But they were deep into what they were doing.

Then to my left a laugh burst out of a woman who snorted egg out of her nose as she struggled to contain the hilarity. Others from the conference glanced, smiled and glanced away, we who have the privilege of knowing forget that we know. But the two women were distracted by the sound and looked up. Their faces both registered shock as they saw the source of the sound. Then each independant of the other scanned the room and found themselves in the midst of a breakfast party. Talking, laughing, people of odd angles were everywhere.

Both looked down, not knowing what to do with their eyes. They stopped talking. They stopped eating. They stopped breathing. For a second I thought that panic would overtake them and they'd bolt the room. But they didn't. They went back to their talk, ruffled through papers, each glancing up every now and then. But the glances got slightly longer, they didn't stare, they were too well bred for that, but they took a good long look.

I knew what they were seeing.

Because I'd seen it too.




By the end of breakfast they were laughing with each other. Their guard had dropped. It was like they couldn't keep up pretense in a room where pretense was just not done.

It was like they realized ... in a moment ... that there was more, much more, to life than they ever thought there was before.

That moment, that discovery, revisits me regularly.

I am truly blessed.

Friday, December 14, 2007

One More, One More

On Wednesday we were in the gift shop wondering how someone could buy an apron with the logo from 'The International Slavery Museum' on it when the phone rang. We answered and though the reception was crackling we heard the unmistakeable voice from a friend back home. Even though it was impossible to talk with such poor reception it was nice to have been remembered. Sometimes when away for a long period such as this we wonder if we grow irrelevant in the lives of others.

That's why checking emails to find a note from Jessika from YSBMS about my upcoming January talk in Barrie (hometown dave) or from Ann at Vita is always nice to see. Knowing that I'm still knit into my life there, that there are people and things waiting for us back home. The hardest thing about working on the road isn't the work it's the sense of disconnectedness that can become unsettling.

I'm probably feeling all this because there is only one more lecture to do and one more sleep to have before getting on the plane to come home. And right now that feels like a huge hurdle to overcome - but we will.

There are several stories mulling about in my brain - people I met, things I saw, conversations I had - but I don't want to write those this morning.

I just want to say, I'm coming home. After having to adapt to rooms and places that were made for generic cripples, I'm going home to where my world is adapted just for me, just for my needs - perhaps that's selfish, perhaps not - perhaps it's simply homesickness.

So, bring on the day, let's get it done, cause I want to celebrate 'doneness' and come home.

Thursday, December 13, 2007

Can Forgiveness Ever Be That Big?

All the close up parking was taken so we parked in the lot on the far side and headed onto the Albert Dock. Though it's a tourist attraction now it still has the feel of a working dock and it's easy to imagine the kind of commerce that went on there. We were headed to see the International Slavery Museum which was housed directly opposite the entrance to the dock. But getting there. I was bounced and jostled, Joe's breath became ragged and his hands hurt as we both tried to navigate first the cobblestone and then the ragged flagstone.

At one point we stopped for a bite to eat just to have a bit of a rest, realizing then we'd come less than half way. Joe went back to put more money in the parking and I struck out on my own. I just looked down and carefully tried to wend my way through the rough surface without doing damage to my wheelchair. I made a fair distance and when Joe came back I was, rightfully, proud of myself.

We found our way in and then took the elevator up to the exhibit. We were then quiet for most of the hour and a bit that we were there. Seeing shackles that bound hands and feet, whips that tore at disobediant skin, instruments of torture and degredation silenced all chatter. There were many there and it was deathly quiet.

One photograph struck me, a white family had painted 1923 Merry Xmas and the name of the town they lived in in white, one letter per black man's chest. The 'Christmas Message' stood in orderly rows bearing a letter each staring at the camera. The men's faces, the men's who's bodies were used as background to white paint, those faces - you should have seen those faces.

When we got to the Klansman's robe, all white and hideous, I turned to Joe and said, "I think I'm full up now ... " and was about to ask him if he would mind if I just went back to the elevators while he finished looking at the exhibit. But instead he just turned and put his hands on my wheelchair and pushed me out.

On the way back, the road was a rough as it had been before. But we didn't complain. Because now it felt like whining. Enough with that, it wasn't that hard.

My God.

Wednesday, December 12, 2007

The Door

I thought about the door all day yesterday. A couple weekends ago we went to Colchester Castle museum to see an exhibit called 'Beyond the Lable' an exhibit on disability. The exhibit was largely disappointing and in some respects startlingly wrongheaded but there was a small part of it that really caught me. They had installed a huge, huge door from one of the institutions. Beside the door was the enormous ring of keys that would have been carried by staff as they walked the halls and locked in life behind them.

It was a sturdy door. A door made to withstand attack. No flimsy garden gate this barrier. This was a door with intent, with an incredible sense of purpose. I touched it and it felt like what it was 'captivity'. The 'doorness' was enhanced by the hole for the key, it took the barest amount of imagination to hear the sound of the tumblers falling and the door being firmly and resolutely locked.

What were they afraid of ... the one's who commissioned this doors birth? Surely they feared no one breaking in ... they must have feared that the life behind the walls would one day want to be free, would one day stampede for the exit, would one day use their will for freedom as a battering ram. This was the door that was meant to hold back what might burst forth. This was a door built, not for now, but for then - that future when the locked away would want to be the let free.

I thought of that door all day yesterday. The Paradigm conference manages to pull of a miracle of inclusion and celebration and education every year. Yesterday the day began with ... drum roll ... the world's first inclusive pop band put together by 'The Movable Feast'. The stage was taken by several dancer - singers, at least five of which had Down Syndrome. Then the music started, the party happened. Those with and without disabilities performed, dancing a choreographed step, singing a song written specifically for the group. It was impossible not to get chills, not to have tears well in the eyes.

It was in that moment, I thought of that door hanging, silently on display, disused and unnecessary, an ignoble death. This is what that door feared. That life would catch in these hearts and there would be a passion to live. There would be a need to express joy. That these kids with Down Syndrome on the stage, these people with disabilities in the audience, these carers watching, all of us in the room, would need community like faith needs God.

I wonder if that door could speak, if it would have the courage to say, 'Sorry.'

Tuesday, December 11, 2007

Joe's Blog

I'm still fighting a cold, I'm starting to feel better ... or I tell my self I am. We arrived in Manchester last night for the Paradigm annual conference which begins this morning. We've been here for years and know a lot of the people who are attending or presenting. Moments after getting into our room we recieved a phone call about meeting up for drinks. I am doing the afternoon keynote tomorrow, I have a cold, there was no way I was tempting fate by going out. I encouraged Joe to go, he knows as many people as I do.

It was actually nice to have some time on my own. I fiddled on the computer, rearranged my notes for the keynote tomorrow, lay down and read my book. A couple hours later, Joe was back. He was full of stories of the evening and came bearing 'hello's' from a number of friends. But he was going on an on about a woman he had me who was so ... funny ... she had been knocking back glasses of red wine ... joking about her husband and telling tales about her honeymoon in Paris.

"Right now, I wish I had a blog," he said.

I was glad he had a good time but ... really. "So this woman works with Amanda?" I asked, trying to get the picture. "No, no, no, she's here attending the conference with Amanda, she has Down Syndrome."

"Honeymoon in Paris?"

"I know! But it wasn't what she did that impressed me, it's who she was. She was just so ... so ... undamaged by life. I promise you, tomorrow when you meet her, you'll see more than just a story to blog about, you'll see ... I don't know ... hope."

Monday, December 10, 2007


"Really?" he said, excited but unbelieving.

"Really," he said and meant it.

I'd seen them walking together as I waited outside the store, Joe in the long line up to pay for our purchases, me getting the time to just people watch. Dad was barely thirty, a good looking guy, his son - probably looking younger than his years as some kids with Down Syndrome do - would have been maybe 8, maybe 10. The kid wanted to go into the store, Dad didn't, so Dad suggested he go in on his own.

"Really," he said, excited but unbelieving. And then he tore off into the store. Dad leaned up against a post and watched his son browse. It was one of those stores that people flock to for Christmas, it's full of stuff masquarading as 'ideas'. Though Dad looked relaxed, he was watching carefully. Son, feeling the responsibility of freedom followed every rule that could have ever been made about shopping. Finally he was standing in front of a rack of Christmas cards and gently picking up cards to look at, his face flushed with independance.

Suddenly a whirlwind of activity. "Where is he?" she demanded, angry. Dad put a finger to his lips to shush her and then, with the same finger pointed into the store. Mom glanced over and saw him browsing the cards. "How could you let him go off alone like that?" she's really, really mad. Dad doesn't take the bait, "He's not alone, I'm right here, I can see every move he makes."

She turns to head into the store.

"Don't," he says, urgently, "he needs this."

She starts to cry, she's mad, she's frustrated, she's scared. Dad says,"He knows we love him, he needs to learn that we trust him too. He's a good boy. He deserves this. And besides, we're right here."

She flys into his arms and they embrace, for a second taking their eyes off him.

In that moment he looks up and sees them hugging each other, he smiles and waves, then turns ... probably to give them a moment's privacy.

Sunday, December 09, 2007


"So, can I ask you a personal question?" He was busy moving chairs back so the room could be cleaned after the crowd had left. We had been talking about Christmas and the huge parties held in the hotel, and the work it was to clean them up. He was incredibly chatty and seemingly became just a wee bit prouder as he explained that room care wasn't as easy as it looked. He'd caught my interest and he knew I wasn't faking my enjoyment of the chat.

Me, I was waiting. I do that a lot now. Joe is running off doing other things, getting things ready, I elect to just sit and watch the world, or occassionaly talk to one of it's inhabitants like today. I always get a little tense with the 'personal question' bit as it's often about my weight, which is personal, or my disability which is personal - depending on my mood. But I told him to go ahead and ask.

"Being in a chair must give you a different perspective on the world, huh?" This I wasn't expecting. He went on to explain that over the years many people with disabilities have sat where I was sitting waiting for someone. "Everyone seems to like to chat. One's in suits and one's in jeans, doesn't matter. Everyone chats with me."

He's a friendly guy so I said, "Well maybe it's because you are friendly and easy to talk to."

"No, that's no it because the others, the ... um ... what do you call them?"

He clearly didn't want to say 'normal', so I said, I call the two footers.

"Well, most of the two footers would just glare at me, a janitor like, talking to them, friendly doesn't work with them."

"Just so you know I've met people with disabilities who are snobs too, but I think for the most part, disability has slowed me down a bit and I now enjoy just sitting and chatting with someone. Not that long ago i would have seen it as a waste of time."

"That's sad," he said as he went back to work.

"Yep, this is better."

Saturday, December 08, 2007


Sometimes I don't get it big time.

I was speaking yesterday in Uckfield, a smallish village in the south of England. As is often the case when presenting in the UK, the audience was a goodly mix of people with disabilities and care providing type folks - parents, paid. I had just finished the first section of my talk and I stopped for questions. An older guy with Down Syndrome put up his hand and I went to him for his question.

At first he didn't have a question. He made a statement. He had listened hard to what I had had to say about 'discovery of selfhood' through joy and he really agreed with what I had said. I smiled feeling really validated. Yesterday in London a similar thing had happened when a young woman with a disability said she was moved by what I said and she actually called down 'God's blessing every day'. After he finished his statement I asked him what gave him joy.

He started to talk with his work with, I'm struggling to remember but I think it was called the partnership board. He spoke of services to people with disabilities. And I'm sitting there thinking that he didn't really understand my question and that he was simply telling me a bit about where he worked and what he was involved in.

So, when he finished, I made noises about how important it was to do the work he was doing and then I went back to ... 'So, now, what gives you joy?"

He looked at me confused and started up again about his work with the partnership board. I got it. I had a diminished expection from him, I was expecting 'ice cream' or 'going to the movies'. Not 'I get joy from the work I do and the purpose I have discovered there.'

When he finished, in front of the audience, I apologized to him. I told him that I understood what it was to get joy from work and passion from purpose. He smiled at the fact that I now got it.

He shook my hand at the end of the day. We are two people working towards a better future. He has Down Syndrome, I'm in a wheelchair, but none of that matters ... as he clearly stated ... the work matters.

Friday, December 07, 2007

Merry Christmas Vita

Right now I'm writing the blog as I sit in a hotel that was once a massive country estate house. It's buried deep in the south of England and sits on huge grounds. The windows in our room are impossibly tall, the decor precisely stubtle. Joe is bustling about getting luggage out to the car in preparation for the drive to the lecture site. We both can smell the smells of an English hot breakfast being cooked just down the hallway. This is as 'England' as this island can get.


I'm thinking about home. Today Vita, the agency I where I work as clinical manager, is having their Christmas party. For the month that I'm away on this trip, I'm in contact with at least one person from Vita every day. There are still programmes to review, questions to answer, opinions to give. Email has made it possible to still feel present to the organization and part of the action.

As I've been here in England, several organizations have heard about Vita's great experiment all ask detailed questions. It's vision to put protocols and procedures and practices into place in order to become abuse free. Even yesterday in London, I recieved an invite to come back next year to Cornwall and do a presentaion on what is now being called the 'Vita Model'. People shake their heads in wonder at the absolute courage of an organization to deeply look inwards and then work to change the corporate culture. One person said to me, "The organization did this voluntarily, they weren't forced?"

Yep, voluntarily.

It's not that we haven't hit bumps on the road. Made mistakes, big and little. Had to apologize to staff and members time and again. But, um, that's why it's called a journey. So, I'm proud of what we've done. I'm prouder still that we haven't lost the will or the focus.

But there is more than that, this year we have moved person after person after person from the institution to community. We sat in meetings and heard how 'impossible the person was' only to discover how deeply possible the dream was. People greet me in freedom when I last saw them in captivity. How cool is that. I spoke to an elderly man here about his days in a large institutions. "You can't believe what people did back then," he said, wiping at his eyes. I put my hand on his shoulder and said, "I can and I do and I'm sorry."

I wonder if our young staff know what a privilege it is to be here at this moment, a moment that is monumentous in the history of disability in Canada. Another province goes institution free - that's how the press sees it. 'An entire people is freed' that's how it ought t be seen.

So, this year, I'm missing the Christmas party and I'm missing being there. I'm missing my own team - abuse preventors, sex educators, advocacy facilitators - and I'm missing the larger team of Vita.

Merry Christmas all of you! Party hard. Listen carefully tonight and you hear a glass 'tink' to your health a few thousand miles away.

Thursday, December 06, 2007

The Whisper

"I have a job." He is whispering. The tips of his fingers are on my presenation table and he's leaning over to give me this information. I'm doing a workshop aimed primarily at staff but there are a lot of those with disabilities present. He's enjoying himself. He finds me funny. I can tell by his reaction to the material that I'm teaching. At the beginning of the first break, he tells me about his work. On his way back into the room he stops again. Balances on the tips of his fingers and whispers, "I have two girlfriends." I make a joke about him being a player. He smiles.

Several times during lunch he comes back, balances on his finger tips and whispers to me about his life. I don't know why he's whispering, he's not telling me anything particularly private. But he manages to make, "I go swimming," feel like intimate information. He never stays long, just delivers his information and then leaves. It's almost like he figured that I've told so much of myself in my stories that the should return the favour.

At the beginning of the last break in the afternoon, he changes and instead makes a statement about me. "You are in a wheelchair." I wasn't sure what he wanted from me so I simply said, "Yes, I am." He smiled, letting me know that it was OK for me to be in the chair, and left. Just before starting up the last quarter of the day he stops, balances and leans in closer, "Is your mother ashamed of you like mine is of me?" But he doesn't give me time to answer, he senses that it's time for me to start and he takes his seat.

An emotional bombshell has dropped into my lap and I've got to get going with the material I'd planned. I shoved all the churning emotion aside and went on with the workshop. When it was over he was getting up to leave and wasn't heading towards my desk. I called him back. He asked the question, he deserved an answer.

"Yes," I said, "my mother is ashamed of me. But it's not because I have a disability, there are other reasons."

"Oh," he said and nodded. Then turned and left.

I had wanted to pursue this conversation. I wanted to let him know that he was a pretty cool guy and that, though parental pride is a wonderful thing - it is possible to live without. I wanted, somehow to talk about what it felt like to live with pride while receiving constant messages of shame.

And on the way back to the hotel ...

I grieved.

I wonder how many people reading this blog would remember their childhoods as having been a nicer place if their parents said, just one more time, "I'm proud of you." I wonder how many people live with accomplishment but not acknowledgement. I wonder how that big, gentle guy who has a job, a couple of girlfriends and who likes to swim, is gonna do at being his own source of affirmation. I wonder if his mother will ever see him like I do.

I wonder if mine will ever see me at all.

Wednesday, December 05, 2007

I Want a Ted

He's sleek, he's handsome, he loves to be touched.

He doesn't talk much, but when he does it's important.

He doesn't get angry when you make a mistake, he's endlessly patient.

I'm in love.


Right now I'm sitting in London having arrived safely without being lost once. And it's all due to Ted. It was Joe's idea to bring him into our lives and I resisted it. But then when were faced with driving into Birmingham - a city where people who live there wander for weeks looking for the road home - I gave in. We bought him Just over a week ago. Here in England Ted would be called a tom tom, back home a GPS. Whatever you call him, he's mine ... sorry ... ours.

Ted tells us how to get from place to place. He sits on the window and tells us, pleasantly, to bear left, turn right, enter roundabout ... he's ... he's miraculous. We haven't been lost once, not once since Ted took over the directions. I don't know how he works, how he finds his way, but I'm glad he does.

I've decided to ask God for a Tom Tom for Christmas. I want a Ted for my life. "In two point two seconds say 'Yes'" would be helpful advice when I'm faced with a decision. "Enter room and turn right," would be most appreciated when I'm avoiding someone. "Slow down and think before proceeding ahead," I'm guessing I'd hear that a lot.

They never told us how hard adulthood would be when we were all young and rushing towards a future we thought would offer freedom, and control, and self fullfillment. Now I understand why the elderly smile at the young - at first I thought it was nostalgic. Now I understand it was 'knowing' - a 'just wait, just you wait, you rash brat, until life smacks you full in the face' smile. I give that smile myself now to the young and impetuous.

I thought that as I got older, I'd get wiser. Maybe I did, maybe not, but for sure the questions are more difficult. There are too many sides. My vision burrs and black becomes white and back again.

So I want a Ted for my life.

Clear simple directions.

"Stand fast."

"Give way."

"Pray fervently."

"Just laugh."

"Watch your back."

Those kinds of pearls of wisdom dropped into my day at opportune times.


Oh, Please

Tuesday, December 04, 2007


It's always an interesting question.

"What questions would you ask someone who is applying for a job to support you?"

I always look forward to this discussion. The questions often veer from the usual 'Where did you work before' to the highly specific 'Do you like Garth Brooks?' What's interesting, though, as part of the workshop for people with disabilities - they have tons of ideas for what they'd ask in an interview although precious few have ever had the opportunity to ever interview anyone.

A couple days ago, the discussion was happening and people were calling out questions they'd like to ask. Few asked questions about education or training but lots asked questions about attitudes, tastes and personality.

"Tell me a joke that you think is funny?" Was a question that came up in a workshop a couple of years ago that I've long thought was a very, very good question.

Now, in Leeds the group is thinking hard about the questions. I see a small hand come up from a woman with multiple disabilities. She had a huge smile and a willingness to participate and be part of the workshop. Sitting comfortably in her wheelchair, she'd been in a couple of role plays and put her had up often to participate.

She'd listened closely to the others as they came forward with questions that they'd ask. I could tell she was listening hard to the others and thinking hard for herself. I will never tire of watching those labled 'uneducable' by those who were unwilling to teach - learn. Finally, having come to a decision, her hand went up.

"OK," I said looking directly at her, "what is your question."

"Will you make me happy?"

Now, that IS the question isn't it?

Monday, December 03, 2007

Waitrose in Bishop Stortford

I like Waitrose, a grocery store over here in England. It's a little nicer than the others, a little more expensive, but it has cool stuff - it even has ordinary stuff dressed up in slightly cooler packaging. Anyone seen their spices? When we noticed that there was one in Bishop Stortford, a town near where we stayed the weekend, we headed in to do some grocery shopping. We use a steamer and cook our meals in our room, it's cheaper, there's more choice, and as vegetarians (with me being diabetic) it puts us completely in control of our food.

We entered the store and found it chock a block with very, very, very important people. It was like they came to Waitrose to avoid the plebs who shop at a mere Sainbury's. It began with just a couple of hostile stares that were water off my back. Big deal. I'm disabled. Get over it. I was pointing out the spices in their cool boxes to Joe, when a couple made it known that we were in their way. She said an exaggerated 'Excuse me' and reached around my wheelchair to get somehthing.

Now the number of times I have waited for a two footer to get out of my way so I could get in at something is uncountable in frequency. But I'm made to feel that, for the few seconds they had to wait - their lives were put on hold. Like my disability disabled them. The trend had been established. People weren't uncomfortable with my disability they were rude, impatient. One person banged the handle of my wheelchair as he said to the woman behind him 'This is in the way." Now I was in the way, but I was in the way because the woman in front had stopped to talk to another woman and their carts blocked the aisle. But when the person behind looked up and saw the two women there was a bright 'Hello'. And they chatted. With me captive, saying 'Excuse me, could I get by.' I could have been calling out in another language from another country - I didn't exist.

I stopped by the tea to look. I always do. I have a tea 'interest' and I like to see what's on offer. I had picked up a box of tea to look at when a woman approached. "I want to get a box of Breakfast tea," she said to me pointing past me. "Oh, OK," I said and put the tea down and was putting my gloves on to push my chair and she said, "Now, please."

I leveled my stare at her. Took my gloves off and went back to looking at the box of tea. She waited then stomped off. My heart was beating in my chest. I was so angry. I then spent time looking at the people in the store. This was a wealthy bunch. They wore clothes of quiet exquisiteness. They had jewelery with just the right amount of glitter. Their make up, understaded. Men had groomed hands. Women had groomed everything.

Life had been kind to them. But they had no desire to pass it on.

Don't get me wrong, I don't want to be singled out for kindness, I just don't want to be singled out for rudeness either. I shop in other shops with other people all the time. But this was a unique experience. A whole community of shoppers united in their distaste of disability in general and me specifically.

OK, Bishop Stortfort Waitrose Shoppers - get this.

I'll shop where I damn well please, I don't need you persmission.

It's a grocery store, not a club - you can't keep out crips, homos, and the rest.

Life made you lucky - life can turn, don't get too comfortable with being comfortable.

It's bloodly Christmas - have you thought to listen to the words of even one frigging carole

You can take you attitude and stuff it in the back seat of your expensive car and let it rot.

I might be back to this area one day and if I am I'm shopping at Waitrose, this time just to piss you off.

My wheelchair is me - you touch it again and I'm striking back.

Real class is determined by manners not wealth.

You may be rich but you ain't got soul.

and finally...


Sunday, December 02, 2007

The Mask

Beautifully dressed, well groomed, vacant smile. She sat, where directed by staff, looking straight ahead, completely unengaged with the world. I spoke to her and she looked at me, listlessly, without responding. "OK," I thought, "this woman has a fairly significant disability." Others arrived and were chatting and arranging themselves in the room. It was another day of workshops for people with disabilities, this one on abuse prevention.

We began. The workshop, though on a serious topic, is designed to be a lot of fun and filled with laughter. People aren't afraid of learning if they are having fun. Suddenly I notice her laughing, right on time, right on cue. "Hey," I think, "there is someone in there." I watch her. Her Down Syndrome, so noticible only moments ago, is receding and her personality is ascending. Now she covers her face with her hands and laughs heartily.

I ask her to come up for a role play. She's up in a flash. The role play involes her demonstrating how close it is for a stranger to come ... it's all about boundaries. She learns to assert herself strongly and loudly. She loves the attention and she's loving learning. At break chat with her and she tells me about her family and her interests - the list is long. She loves her family and is well loved by them. She even makes jokes about her MU ... ther.

Later, after lunch, I see her sitting in the lobby of the hotel the event is being held in. Her Down Syndrome mask is back on. Hotel guests walk by, stare, then look away pity (or fear or revulsion) in their eyes. No one, that's NO ONE responds to her neutrally. Everyone sees her disability, everyone sees the result of the extra gene, everyone has a reaction.

But she is immune to them. Hiding behind the mask is a vibrant woman in disguise. They'll never know, never realize.

Now, there's the pity.

Saturday, December 01, 2007


At first.

At first I thought he was staff. He had a confident swagger, a cheeky grin and a sense of style that was just the right amount of edgy. A bit cooler than most of us who work in the caring profession, but I get used to the young. It was only after I begun when I realized that he was sitting with some friends, others with disabilities, that he too had an intellectual disability. I'm not sure he'd like that term, here in England they use the term Learning Difficulty.

I had been nervous about the day as I was trying something new. I wanted fresh input into what I was doing so I did an old workshop with a twist. I stopped after each of my planned role plays and had the 50 or 60 people with disabilities and their carers break into groups, come up with their own example and then come up and be filmed doing their little play. I am desperately nervous with new things and had worried, needlessly, about the day. It was a great group and they got into writing role plays, performing them and watching themselves on screen.

He'd been up three times in three different roles plays. He impressed me for a variety of reasons. Primarily, as a guy who needed minimal supports he showed no disinclination with being part of a group wherein some had much more severe needs. Often, those with lesser disabilities want to distance themselves from the 'others' and identify instead with carers. He showed no such need. No such shame of membership. His cool was deeper than his clothes.

During his last role play he came by me and I stopped him and made a joke to the audience. I said, "You know you've played a guy who has a messy, stinky room, a guy who hates Celine Dion and a guy who reads other people's mail ... you must be hell to live with ..." He laughed and said, "Yeah, and I'm a tart too!" The room erupted in laughter.

When it was over and he and I were talking a bit, I had wanted to thank him for his involvement in the day. I noticed that he was wearing a small red ribbon attached to his sweater. I asked him about it. He said that he was wearing it to mark World AIDS Day. He told me that he was a member of a group for people who were HIV positive. Then he talked a bit about his health and difficulties he was having. We spoke about the gay community and it's intolerance and sometimes hostility towards people with disabilities. We spoke about the need tor all, that's ALL, to be educated about how to be safe.

In the end he agreed to work with me to write something for the gay press, maybe the disability press as well about what it is to be gay, to be HIV positive and to be a service recipient. He smiled a bit shyly, I thought, at the idea. Then he said, "I'm up for it."

I remember many years ago when a man with an intellectual disability died of AIDS in Ontario. There was such a cloak of slience about what had happened. A sense of shock and shame. No one would even say his name aloud. This silence has caused damage ... maybe if we'd noticed then that there were real world dangers, that there were real world consequences, we'd have done something. Maybe, at a time when this young man was a boy, if we had taken stock and stepped up to the plate, there would have been training in place. Maybe, maybe, this is our fault.

"They want to sweep it under the carpet," he is saying to me. And I agree.

Today, on World AIDS Day, there is a man with an intellectual disability in Bournemouth handing out leaflets about AIDS awareness, about self protection. You'll notice him, if not by his cool, at least by his deep, deep pride.