Travel

It's 5:00 AM, I've slept in. I don't know how but I set the alarm incorrectly, we should have been up an hour earlier. So now all the world is a rush. The only reason I have time to write anything is that Joe is in the shower which gives me a few minutes before I have to do the same. We are flying today to Regina where I'll be doing two keynotes, one on Tuesday, one on Wednesday. Our flight isn't until 9:15 but travelling 'disabled' means taking a whole lot more time.

Joe has to drop me off at the terminal, get me in such that I can sit and guard the luggage while he parks the car. Then, after he gets back, we have to go to 'special services' where we will be 'assisted' with our flight. It's amazing how 'special service' personnel often seem to resent disabled people! Especially those, like me, who think that 'service' means ... well ... 'service'. I don't expect to sit parked off to the side until someone feels like taking me to the gate. I actually expect to go to the gate after check in. It's always a fight, but I always get taken.

So on the way down to the terminal I've got to get into a 'self-advocate' mode which is a combination of firm determination and temper control. Especially when they want me to check my wheelchair in at the gate and get me into one of the airport chairs. I don't do that. I take my chair to the plane, have it put underneath with the strollers (theres dignity for you) and have it brought back up again. The airport chairs are too narrow for my, um, build and it's like asking a two footer to check their legs in at the gate.

I'm often thankful that I worked for years with people with disabilities and learned that second best is not an option. Now in my work with people with intellectual disabilities I ensure that they have the opportunity to practice speaking up, practice assertion, practice personal advocacy - it's a skill they need for the world. They'd better have practice time at home.

So I ... Ooops ... Joe is out of the shower and calling for me to get going. His voice says I have no option. I'd try self advocacy now, but it's probably not the

Darkness

People don't make sense.

We need to begin there. We need to be mindful of this.

It's 7:50 last night. Earth hour was looming. We knew it wouldn't mean much to us here in the country where it still gets dark at night, where we only can see two houses from our windows, where there are no street lights, no businesses, and few cars that travel past. Even so, we were 'in' to the idea of Earth hour. And have been for years.

We started recycling in the early '70's after being introduced to the concept by a fellow student at UVic, Judy Belton. Judy was (and is) a remarkable woman who was far ahead of her time. She volunteered at the recycling center and brought us there to show us huge bins of tin cans, bottles, and paper. She explained how this would all be reused, she had a passion that was contagious and we became recyclers.

Both Joe's parents and mine were furious when we returned home from university with 'bizarre' practices. We would go to the grocery store with paper bags we'd saved from previous visits. This threw off the clerks and caused embarrassment for our families. They didn't understand what we were doing, the fact that Campbell River made it's money from paper mills made the whole thing seem almost traitorous. There were several spats about this, and an actual demand that we stop doing what we were doing. We didn't.

We got on the composting bandwagon just after we purchased our first home. We were both astonished at how the compost pile just never seemed to grow. The compost heap produced the most incredible soil and made our plants at home very, very happy indeed. Around the same time we became vegetarians and were conscious of how our choices in shopping and eating affected the planet.

Energy conservation was more of a 'Joe' thing. He was very aware of lights left on and would turn them off. I'd leave my office for five minutes to go to the washroom or to get a soda and I'd return to a room left darkened by Joe. He'd face me down in arguments about lights, I caved and became aware of any lights left on. My awareness, to be honest, was more "I'd better shut off the light or I'll get shit from Joe" than "I'm turning off the light to save the planet." But we are familiar, in our home, with darkness.

My choice to use a manuel wheelchair was made for similar reasons. I wanted to use my own energy to get myself around. I was unsure of batteries and worried about losing 'power' and thus losing movement. It seemed to me that my own energy was renewable and portable and while I was able, that's what I should use.

So to us 'Earth Hour' was cute, a good idea, but would not effect much change in our lives. That being said, seeing Joe rush around the house at ten minutes to eight turning on lights around us, such that we were in a blaze of lights, seemed odd. Then there he was lighting candles ... on the piano, on the table by the couch, and even, Heaven Forfend, on the window sill.

I asked him why he was turning the lights on. He replied, as if it made sense, "So we have things to turn off at 8."

There are times in a relationship where you just nod and keep silent. This was one of those times. I nodded. At 8 o'clock, on the dot, Joe rushed about shutting the lights all off. Suddenly we were lit by candle glow. It was nice. The candles. So for an hour we lived, noticing how we lived, and reminding ourselves all these years later of Judy Belton and her passions.

We didn't think that we'd notice, Earth hour, out here in the country. But we did. Both houses across from us plunged into darkness. The glow on the horizon from the lights in Barrie disappeared. It was a spectacular dark.

At 7:50, it didn't make sense to me that Joe was turning on lights. But it did to him. He wanted to symbolically join in with the movement. To make a statement.

I don't get where he gets that. But cool. I kept my mouth shut and sat in the dark.

This is the secret of any good relationship.

The "Fat" Challenge ... With a Prize and Everything

Yesterday Dr. Darlene McLaughlin was in Toronto doing a lecture for the Vita Master's Series. One of my jobs is to create a 'pre lecture' show that plays as people are arriving and during lunch. This is the fourth time that I've done a 'quiz' as part of that show. The quizzes are always about disability and media. Here are the most recent ten questions. But, a difference, the first person to get all ten right, will be able to choose a book, authored by me alone (I can't give away someone else's work) which will be signed and sent off to you where ever you are in the world. So, good luck ... these are, I should warn you, the hardest questions I've come up with. Go ahead and browse for prizes at http://www.diverse-city.com/ Those who were there at the conference where the answers were posted are, of course, exempted from the contest.

Disability Goes to the Movies

Question 1

In what year did the first movie with a character with an intellectual disability get made?

1939

1946

1953

1961

Question 2

The life of Derek Bartly, a man with an intellectual disability, was dramatized in the 1991 movie ‘Let Him Have It.’ Bartly's life led to a significant social change in England with repercussions in Canada and throughout the British Empire … that change was:

The founding of the Special Olympics World Games

The establishment of the principle of full work for full pay for people with disabilities

The abolition of the death penalty

The abolition of marriage laws forbidding the marriage of people with disabilities

Question 3

Charlie Chaplin is remembered as a comedian but he wrote most of his own films. In one of his most famous film his character ‘the tramp’ befriends a blind flower girl and attempts to restore her sight. What was the name of this film?

City Lights

At The Races

The Flower Girl

Daisies

Question 4

The film ‘Johnny Belinda’ featured a young girl, known as the town ‘dummy’ who is deaf. The film was set in what Canadian province?

Ontario

British Columbia

Nova Scotia

Alberta

Question 5

Chris Burke, an actor with Down Syndrome, is well known for the series “Life Goes On” but he also was a featured player in what other television programme?

The Young and the Restless

CSI:NY

Dexter

Touched by An Angel

Question 6

Moulin Rouge features the real life character of Toulouse-Lautrec, he is portrayed by an actor who is on his knees in close ups and by a dwarf in long shots. In reality, what was the source of his short stature.

He was a dwarf.

Both his parents were short.

A botched operation affected his growth pattern

His height is a historical myth, he was simply shorter than most.

Question 7

Love! Valour! Compassion was one of the first movies that featured almost entirely gay characters. One of the film’s characters had a disability … what was that disability?

Deafness

Blindness

Paraplegia

Quadraplegia

Question 8

The Canadian animated series ‘Quads’ was based on the life of what famous person with a disability?

John Callahan

Christopher Reeve

Jason Jackman

Christy Brown

Question 9

Peter Sellers plays a man with an intellectual disability in the film ‘Being There’ … in that film what was the occupation of the character.

Shelf stocker

Gardener

Grocery boy

Bike courier

Question 10

In “The Diving Bell and the Butterfly” the main character has a stroke to the brain stem, what was his occupation before the stroke left him with near total paralysis.

Editor

Jockey

Director

Photographer

Live

It had been a difficult morning, we were on the road by 6:30 headed to Milton where I was to give a morning lecture. That should have left us time to have a liesurely breakfast when we got there. Just as we were to get on the 407 the radio announces that there is a massive accident and the highway is shut down. We decide to go down the 400 to the 401 but there is an accident there too. It takes us over two hours to go 80 kilometers.

Instead of being early, we're late. Rushing in with an audience waiting isn't the best way to relax into a presentation, but sometimes we have no choices. Luckily I was really in the mood for the talk and once I began, all the tension of the rush, being late, sitting in traffic, began to wash away as my attention began to focus on things that I believe in, passions that I had. The audience, helped, they not only reacted appropriately to the material, they asked questions that allowed me to take little verbal excursions from the planned route. I always enjoy that.

As I was finishing I could see several people with disabilities working at setting up lunch through the window at the back of the room. I rolled out to see a wonderful spread laid out and several very proud people with disabilities standing in the background waiting to remove empty plates, replenish things that disappeared to quickly. They were alert to the demands of their jobs. I never understood why companies don't want to hire people who really do want to work.

But I recognized one of the guys there, Tom, I hadn't seen him for years. I don't remember how we met, I think he attended one of the abuse prevention training classes I did for people with disabilities in that area. But, no matter, I recognized him and he obviously remembered me because he said, "Hi, Dave."

We fell in to chatting and he told me that he had made the sandwiches. He sat where he could see people taking the food and pride was all over his face at his accomplishments that day. So he told me about the job, pointed out who had made the desserts, who had helped with the sandwiches, he was sharing my praise with the team. Nice guy. As that conversation was running down, I asked him if he was working a long day.

"Yeah, it's a long one today," he said.

"What time do you finish?"

"Three o'clock," he sighed.

"I'm working a long day today too," I said.

"What time are you finishing?" he asked.

I told him that I was working late and wouldn't be finished until 7 or 8 that evening.

He looked at me with shock mingled with concern and asked, "But when are you going to live?"

I laughed at how he phrased it and told him that I would have to work a little harder at living. You could see that he thought I should.

So I think I'm not alone in this ...

Putting the word "live" on my to do list.

Join me?

Turkish Delight

English, no suprise there, but wait ... there's also French, Spanish, German, Greek, now Turkish and in a few months Korean. Those are the languages that my writing has been translated into over the years. I got a real thrill this morning when a Fat reader Gün Osborn sent me one of my posts as it looks translated into Turkish. I looked at the letters and couldn't pick out a single word but felt a thrill none the less.

I forget, I wonder if WE forget, that our community is international, our concerns universal, our struggle everywhere. I know I do. When I first moved to Quebec, where I lived for ten years, I was quite startled to see a kid with Down Syndrome in Magog speaking French. He opened his mouth and out came ... French. It was weird that that surprised me. Of course he would speak his mother tongue, but somehow it took me aback.

Too, the time I was in Amsterdam and one of the guys who worked in the falafel store had an intellectual disability and there he was speaking Dutch and doing Dutchly things. He was struggling to make our order for 50 falafels (yes 50 - we were particularly hungry that night, so hungry that we walked weaving back to the hotel, laughing over the slightest thing ... in the morning we'd eaten 49 ... which was because we found one had fallen under the bed) but anyways there he was speaking Dutch.

This blog has a feature where I can, through sitemeter, figure out where readers come from in the world. The first time I did this and saw readers spread across much of the world I was in awe. And now this morning Gün Osborn sends me a little treat. Very very cool. But it set me to dreaming about what a powerful impact we could make as a worldwide community. As people who, around the world, demand justice and peace and gentleness for all children, for all people - including our brothers and sisters with disabilities.

I know this sentiment is trite ... but trite as it may be it's never been actually tried. I just know that parents of kids with Down Syndrome in the Ukraine will have similar stories to tell as parents in Richmond B.C. - and I know from travelling in a chair that there is a universal 'AAARRGG' over accessiblity and attitudes towards wheelchair users.

Pipe dream or not, it was nice to be reminded that we are everywhere, and to those readers in Turkey that are about to get a shot of Chewing the Fat ... Welcome.

10 Bits of Advice

An odd request for a guy who has never had children, "Could you write some advice for parents of kids with disabilities?" I look back on the days when I went into family homes to consult with parents of children with disabilities who had problem behaviour with a wee bit of shame. I understand now that I never really understood the issues they faced nor the degree of exhaustion that they experienced. I tried to be sensitive and creative in the approaches I designed and if they worked, which often they did, it was primarily due to the incredible determination of a mom or a dad. But, the younger I was the more I knew.

But I've been thinking about the request. There are some things that I would give as advice, things that I've seen from a distance, things I've learned from talking to parents who did the parenting thing well, so I'm going to give it a shot.

Piece of Advice 1:

Don't live in only one room in your heart. Move from room to room often, keep the doors well oiled. There is more in your life than a child with a disability, there is more in your life than battles with schools, spats with experts, conflicts with rude strangers. Continue to be who you were before children - before disability ... keep a sense of proportion, a sense of humour and a sense of self. It's a difficult world for your child and it's difficult helping someone navagate that world. But it's also a world of fun and pleasure and laughter. Experience both. Remember there are other people in your life, don't neglect your spouse, your other children, your friends ... there are many rooms in your heart - live in a mansion, not a one room walk up.

Piece of Advice 2:

Listen to the opinions of others but trust your instincts. Just because someone lands in your home as a 'expert' on disability, on behaviour, on speech, on anything - doesn't mean that they actually like people with disabilities. It took me a long time to understand that there are people who are paid to care for people with disabilities who actually don't. Who fell into the job, who enjoy power, who 'know better, know best' and love to prove it. So listen to their opinions but decide for yourself. Never give control over to another - never - they will always misuse the power you grant them. Establish boundaries early on, know what's yours and what's theirs. You will find, in time, you can tell the motivations of the 'expert' quickly. Like a dog can smell bacon a block away, you will smell conceit in seconds.

Piece of Advice 3:

Don't get addicted to your child's need of you. Don't become reliant on their role in your life. Children are here to grow up and grow away from you. It's your job to help them individuate and to ensure that they begin to assert themselves in the face of even your power. Too many parents begin to hold on tightly to their adult child, forbidding relationships, forbidding risks, forbidding independance 'for the good of their child' when really its 'for fear of my own loss'. There was a time when people with disabilities were forbidden adulthood, that time has passed. Your child will grow up, will want to have independance (from you) and relationships (with others). Parenthood really isn't about you ...

Piece of Advice 4:

Laugh. Celebrate. Be joyful. When you talk to other parents of kids with disabilities you will find that they all, the ones who are still sane a couple of years in, have whacked out and bizarre senses of humour. They can laugh at things that will startle you. They will tell stories that will curl your toes - and they will be wiping tears of laughter from their eyes at the same time. They will, the ones who are still coherent a couple of years in, tell you stories about the tremendous joy, the incredible accomplishments of their children. Laughter and celebration and joy come from parents who manage to shift their perspectives and redefine success. They see their child overcoming dour predictions of failure - they know what this means and they are joyous about it. They begin to understand that there are many ways of being successful - marks and money being two of the most meaningless. They begin to 'get life' in new and incredibly wonderful ways. And, oddly, this makes them happy.

Piece of Advice 5:

Save your anger for when you need it. Tuck it away and use it as a tool. There is so much to be pissed at. There is so much that will rankle you. This is something that I had to really learn as a person with a disability. At first I was angry a lot, at the stares of others, at the patronizing tone of voice, at the assumption of incompetence - yada yada yada - it still annoys me but it ain't worth my wrath. I keep my anger ready for when I need it for battle. It gives me fuel then, anger at the universe, at the manners of strangers is useless, wasted and it tires you out. Anger targetted can be an effective tool for change. Reserve it, use it ... then let it go.

Piece of Advice 6:

Find community. Make sure that you aren't in this alone. Through blogs like this one, or a gazillion other disability blogs, through parent organizations ... there are places where you can find others who understand the journey you are on. It is important that you have others to talk too, others in front of whom you don't need a facade, others who will get it when you say something like, 'oh my God ... schools'. The immediate understanding will let you know that you aren't insane - the world is. Get lost in their stories, talk to parents of kids who are older, they will give you the heads up for what's coming next.

Piece of Advice 7:

Talk to your child about their disability. Never say, 'you are just like everyone else' - because it isn't true. They have differences. They should know what the differences mean but they should also know what disability doesn't mean ... having an intellectual disability means having difficulty with learning, it doesn't mean that they won't grow up, they won't get jobs, they won't get married. It means that they will find some things hard that others find easy ... it doesn't mean that they should be teased or bullied, it doesn't mean that they should expect less, it doesn't mean that their life has no value. It means that they may need help with some aspects of their lives ... it doesn't mean that they have no control, it doesn't mean they have no choices, it doesn't mean they don't have power. So don't deny their disability, but don't give the disability power it does not have.

Piece of Advice 8:

Understand that your child needs all the options that every other kid has, they have a right to 'community' ... the larger community. But they also have a right to their own community. They have a right to socialize and hang out with other kids with disabilities. They have a right to their own peer group. Oddly we have come to the point where the mere idea of kids with disabilities hanging together is a political and philosophical issue. "They should not have segregated activities or friendships." What? Of course they should have opportunties for friendships and activities with any other kid. Don't teach them that friendships with non disabled kids are more valued than friendships with disabled kids - what's that saying about disability, about who they are. Be radical in seeing your child's right to a variety of communties ... not just one.

Piece of Advice 9:

Um, blush, don't forget sex. I know that's what got you into this in the first place, but sex is still - fun. I know, I know, I know I should talk about sex as being an expression of love and intimacy and all that jazz. But ... it's also ... mainly ... well, let's put it this way. A woman with a disability that I did some counselling with a few years ago could not, for the life of her, say the word 'orgasm' ... she always refered to it as 'the big tickle'. And ever since I can't think of it any other way, it's the big tickle. You may end up being so tired that you start to lose the desire. That should be your early warning system ... ALERT ALERT ALERT ... somethings off balance here. I'm going to tell you something cool. Do you know what makes the clitoris unique in the human body? Well, it's the only organ that exists for the sole purpose of giving pleasure. Isn't that cool. It's like God has a message for us about sexuality, and the clitoris is the messanger ... it's SUPPOSED to feel good. The big tickle ... you'll need it ... don't get off balance.

Piece of Advice 10:

Never read advice columns that round up to 10 or 12 or some other pretty number, all that means is that the writer felt that stopping at 8 didn't feel complete or that 11 just begged for 12.

...

So that's it. Ask and you will recieve. I don't know if this is helpful, wanted or even accurate, but it's what it is, for better or worse.

New Blog Feature: Dave's Calendar

I've struggled with what to do with the requests. I'll be somewhere lecturing and someone will say, "If I had known you were going to be in the area I would have had you do some staff training for us" or after having left an area, "I wish I'd have known so I could have come and heard you talk." Everyone is always asking if I have a website with a schedule on it. Um. No. There are those that can testify to the fact that I only have a blog because I know someone who helps me with it.

So what I've decided to do is to put information like this ...

I will be in Washington State on the week of May 12th for four days. So if you are wanting to attend or book a day then just email Joe and he'll get the information to you.

I will be in British Columbia for two days the week of May 19th. So if you are wanting to attend or book a day, then just email Joe.

The advantage for agencies booking on these days is that they'd share travel costs which makes the whole thing much more economical. And besides, I get to work more and travel less - which is cool for me.

You can contact Joe by email at daveandjoe@hotmail.com and he'll get back to you right away.

When I put these announcements on they will not replace the daily blog, the daily blog follows ...

Done

At 12:30 yesterday we accepted an offer on our house. We've agreed upon the end of July as our closing date and we shook hands on a price. All morning I fretted and worried about the meeting. The usual insecurities about 'are we doing the right thing' and 'is Joe's new enthusiasm for the move real or put on for my benefit' and 'how will it be to live in an apartment again' and 'what do we do with all that stuff' and 'I'm scared.' As we sat down to meet a lovely young couple and talk seriously about the house I could see real excitement in their eyes as they described the houses they've looked at and how much they love this one, about how their kids were going to love living there, about the local school and the neighbourhood. I caught a bit of their excitement.

The they asked us how we came to decide to sell. Joe passed the question over to me and I explained that living as a person with a disability in the country was ultimately isolating, that there were so many things that need to be done with houses that I can't do anymore and my fears won't let Joe do, that we had loved living in the city when we lived there before and would love living there again. They listened and nodded, it all made sense to them.

So it was all set. Then Joe went with the wife down into the basement to look at something she wanted to see and I was left with the husband. He asked how I got into working with people with disabilities and surprised me by telling me that his brother had an intellectual disabilities and how that experience made a difference for him. He talked about the teasing and name calling his brother experienced and how it had made an impression on him and how it had affected him as a parent. I found myself liking this guy and thinking what lucky kids he had.

It wasn't important, or even necessary, for us to like the people moving into our house - but it is a gift. There were times that this whole process seemed pre-ordained - it's been so smooth and painless. We actually sat and talked about how we could help each other out, they were saying that they were young and strong and that anything we didn't want, just leave and they'd either use or cart it away for us. That they'd clean and paint and do all that stuff so - don't worry about it. We agreed that they could have access to the house whenever they wanted to check things out and move things in, organize themselves.

So it was done. I had worried needlessly, they left happy with the meeting and we were left thinking, "I'm glad it's them'.

Now we begin the search for our next home. We've decided on getting an apartment for now and think about the future later. But ultimately we aren't too worried. We've lived happily in big places and small, we'll be OK. And I'm picturing having a greater amount of independance, greater freedom, and a little more of the life I had before my disability. I don't care that I'm moving around in my chair, I just want options.

But it was nice to like them.

Weird.

Haircut

I went to get my haircut this weekend. Saturday ended up being the only day we went out. Joe developed a bad cold in the middle of last week, so we stayed in and cooked on Friday, but on Saturday he said he was up to a trip to the mall. By that afternoon his cold was back with a vengence and yesterday we stayed tucked into the house not venturing out once. It's been a quiet weekend.

But back to my haircut, because, you are dying to know. We parked at the mall and when Joe went to the washroom I wandered along looking at the stores. I saw a hair cutting place and rolled over to check if the wait was long, and if they could move a chair out so I could roll my chair in. I was greeted by a friendly smile and an assurance that there would be no problem with getting my wheelchair in right away. I waited for a moment for Joe to come back and then I told him that I was going to take the opportunity to get my hair cut.

I pulled into the space that the 'hostess' indicated and knew that I was in a 'salon' not a 'barber shop' when I was asked, "Do you prefer sissors or clippers?" in a tone that dripped pretension. I said that I didn't care what was used. "I'm feeling that sissors would be best for your style of hair," says the woman with a great sense of gravity. I'm thinking, "It's just a frigging haircut, it's not major surgery," but you don't say those things to people with sharps all around.

She was going to chat and chat she did. I never know what to say in these circumstances, I'm shy with people I don't know and I always revert to the clumbsy conversationalist I was when younger. I hit upon a question, a good one, one that I thought would sail us through to the end. "So, you worked here long?"

"No," she said and then went on to explain that for 16 years she worked in a nursing home. It was supposed to be a student placement but turned into a long term job. She got tired of it and became a 'stylist'. Then she said, "You probably noticed right off that I'm good with wheelchairs," not pausing for an answer she continued, "yeah, well that's 'cause I worked with wheelchairs for so many years. You've got to learn how to handle the wheelchairs, so they don't get upset. I got really good at that. We don't have a lot of wheelchairs come in here and some of the others are uncomfortable with them, but to me a wheelchair is just, like, a wheelchair."

She's almost finished my haircut ... sorry, let me rephrase, She's almost finished styling my hair ... and I'm wondering if I should speak up. I mean 'wheelchair' - I'm in a wheelchair, I'm not a wheelchair, that may be a minor distinction to you but it's a big one to me. I hated it a few months ago when I took a flight and there were a few of us with disabilities there and the woman at the desk wanted us to get on the plane first and over the announcement speakers said, "Could all the wheelchairs come up to get ready for boarding?" And what the hell is 'Being good with wheelchairs?' Isn't thinking that you are 'good with wheelchairs' direct proof that you are not? But ultimately, I just let it go.

I came out of the 'salon' with my hair 'styled' and Joe said, "Nice haircut" and the whole artiface fell. As we were heading to do some shopping I said, "Well at least I got a blog out of it." Joe said that he'd looked throught he window and could see that she was talking a mile a minute and knew, just knew, that that wouldn't end good. I told Joe of our conversation and he laughed.

On the way home in the car he looked at me lovingly and said, "Did wheelchair have a nice time in the mall?"

Funny.

For Unto Us A Child Is Born

Another email was waiting for me when I got up this morning. Without further ado:

"It's been an emotional ride for me this week. I should probably start by telling you about my husband and his family. He was with me, of course, when the doctor told me the results and he didn't even flinch, all he did was take my hand. He had had an aunt with cerebral palsy who died when he was in his teens and of whom he still speaks with love and affection. He wanted the child no matter what but agreed to leave the decision up to me. His family was equally supportive and there was no difficulty in telling them at all. Most of them seemed genuinely excited about the baby, it was like they didn't hear the 'Down Syndrome' part.

My family has been another story, however, and it has caused me no end of sorrow. My sister in particular has been on at me about the decision to keep the baby. She thinks it is reckless and irresponsible to bring a 'defective child' into the world and then expect 'taxpayers to carry the burden'. She's been angry and adament. My mother has been torn between the two of us wanting to support me but, in her heart, agreeing with my sister. I've tried to explain that I've learned a lot about Down Syndrome and that it doesn't mean what they think it means. But they won't listen. It got so bad that my mother threatened to cancel our Easter celebration tomorrow if my sister and I couldn't agree to leave it alone for the day.

Well, I don't want to leave it alone. I don't want to go and pretend that everything is fine while my sister is sitting there passing judgement on a child that hasn't even been born yet. My husband, ever the peacemaker, says that I should let it go because what my sister think ultimately doesn't matter. He says that my sister and I are always at each other about something, this is just the latest battle ground. That's true but all our squabbles now seem petty, this isn't petty. This is my baby. More than that I don't want her passing her attitudes on to my other children. They don't really understand what the whole fuss is about, they are just pleased at having another brother or sister. For reasons I don't understand they really love their aunt and I'm afraid of the influence she will have on them.

So when I came on to read Chewing the Fat this evening I was wondering if you would have posted my letter to you. I was pleased that you did and then I saw that there were 65 comments. I read them and started to cry. Really cry. I called my husband and he sat here with me and we both cried as we read all the notes of encouragement and congratulations. It took us hours to go through the comments because we kept stopping and talking and hugging each other. All these people from around the world were embracing us, becoming a new family to me. I can't thank you enough for your words of encouragement and for the people who commented on your blog made such a difference to me.

My sister had not swayed my decision to have the child (no I don't know if it is a boy or a girl) but she shook my faith in people. I had it restored this evening. Thankyou."

I have, obviously, editted out the parts of the letter that were to me personally, I can just tell you that I'm going to meet up with Mom and Dad in only a few weeks as I am going to be in their part of the world. I'll keep you updated.

Times 2 Accessible

Today we are going to check out a new church, thinking maybe to go there on Sunday. I heard from someone that it's fully accessible and that they welcome, ahem, diversity. So we're going to take a look just to see if the wheelchair can get into the building, if so we are going to go to service on Sunday.

While I have a comfortable relationship with God and my faith (although I keep getting taught life lessons, like I'm in God's remedial class). I have a less comfortable relationship with God's 'friends' here on earth. A third want to heal me (if you believed you wouldn't need a wheelchair), a third think that my relationship disqualifies me from receiving the love of God (um, like, OK, God didn't make Adam and Steve, right? You unnastand what I'm saying?), so I'm always looking for the other third - the third that is open to the idea that God could, on day when he's eaten chocolate, love even me.

It always bugged me that I lost 'neighbour' status when people learned that I was gay or when they saw me in the wheelchair. Like when Jesus said, "Love thy neighbour' - most people picture neighbourhoods where wheelchair ramps into homes have been forbidden by bylaw and there are certainly no well decorated townhouses with cute little topiary fawns. But bug me or not, it's not up to me to judge their judgement of me (although I do, I admit it I do).

I miss having a church home, a place to belong and to express my faith. Whatever others think of it, it's a big deal to me. I find solance in prayer. I find comfort in the companionship of God. I find example in the courageous, compassionate life of Christ. And I like to express that faith in community with others.

So we'll check it out this morning and see what the place looks like. Then if that works, we'll go tomorrow and see what it feels like. I don't have the 'drop in and visit God' approach to church because he constantly seems to drop in on me. It's just that I like to hear a sermon, sing a hymn and experience the sense of community.

But we'll see, in a few hours, if that visit is possible. If not nothing much will change. But it would be nice, this Easter, to celebrate the life we've been given, the road we've been set upon, and the journey yet to come. On Monday we sit down and meet with the people wanting to buy the house and we hear their offer. Then we need to make several huge life decisions. It would be nice to be prayerfully ready for that conversation. And, I guess, we will be - church or not - luckily, no matter what others have told me, God doesn't call screen.

Gonna Be a Good Friday

As yesterday drew to a close I began to get a sense of real excitement. The long weekend arrives at last. A sense of quiet descends around the office as people begin to leave for the day. My last appointment is cancelled and I'm left with a bit of time before Joe arrives to gather me up and take me home. I don't want to work anymore so I call the boss and talk to her about oolong tea, surf the net reading other bloggers blogs, tidy up my lunch stuff and ready my wheelchair bag. When the phone rings I know Joe is downstairs and waiting for me.

Today is a 'we're a family' day. We are getting set to make a huge vat of chili in order to can a dozen or so jars. That means that I'm going to spend the morning chopping onions and peppers and then we'll slowly fry them up, making the kitchen fragrent with the smells of enterprise. We'll open the cans of beans and ready the spices - we like our chili to have kick so we'll pull out the chili powder, cayanne pepper and a few spices that make our chili really our own. Over our 39 years together, we've fine tuned the recipe and our secret ingredients will never be shared.

We do this often, we cook up vats of spaghetti sauce to can, make huge lasagnes to freeze into meal sized portions, and every time we do it we enter into well rehearsed dance. Each knowing what to do and when, chatting the whole while about work, people we know and our life together. Given the amount of time we spend together it's perhaps amazing that we still have anything to say, but we do, and in the relaxed atmosphere of a shared task we say what needs to be said.

This is an activity that has not been touched, even slightly, by my disability. I have my kitchen wheelchair which allows me free movement around the kitchen, allows me to fully participate in what we do together, ensures that my contributions are real. At least once I'll say something that will dissolve Joe into fits of laughter, at least once Joe will say something that is so obscure that I'll be lost for a moment looking for the threads of his logic. It's tradition. That we are a family, a couple, would be obvious to anyone with the capacity to pick up the sent of chili on the stove.

This is my family.

I value it.

Spring Cleaning For The Soul

In about an hour spring will arrive. At least according to the radio. It's a little hard to believe with 5 feet of snow on your lawn and 7 feet of snow along each side of the driveway. "Baby it's cold outside." But, heedless of what it looks like or feels like outside, spring arrives. I always dreaded 'Spring Cleaning' ... with it's enormous tasks and the crazed look that Joe gets in his eyes as he decides to 'spruce up' the house. I try to sit quietly here in my office or slink unnoticed into the bedroom to read, but suddenly he's there and obviously cleaning while I am equally obviously not ... it's never a nice time in our relationship.

But this is a different kind of spring cleaning. It's a 'welcome the warmth by creating warmth' project that takes 7 weeks. The goal is to brush away the cobwebs in mind and heart. The way it works is that you chose one day a week, for seven weeks, and on that day you do a 'spring cleaning' project. I'm doing it this year and will blog in seven weeks time about the project. Several people at my place of work, Vita, are taking on the project at work ... I'm going at it both professionally and personally.

Here's the tasks, note you will not neet a mop, a bucket, or a glare at your spouse to accomplish any of these.

1) Thank someone who has been kind to you, someone who has provided you with support, someone you have leaned on. Even if you've thanked them before, thank them again. Tell them that they matter in your life, that you appreciate what they do for you.

2) Do something nice, anonymously, for someone who is having a bad day, a bad time or is going through something rough. Let them know that there is someone out there who is rooting for them, who wants to bring them a moments joy. Never tell them it was you, keep it a secret not only from the person you did it for but from everyone.

3) Call someone you don't see often enough and go out for tea, or coffee, or a beer. Reconnect with them, when together share a happy memory from the past. Remind each other why you are friends and why it's important to get together every now and then.

4) Send a funny card, for no reason at all, to someone who lives far away. Jot a note inside about how often you think of them and that you hope all is well in their lives. Giggle about the card, giggle about your life, giggle. Forwarding an email doesn't count here, it's gotta be a card, something that arrives in the regular post.

5) Vary a routine. Drive a different way to work, sit in a different seat at a meeting, have a different breakfast, We all get into patterns where we don't have to think or notice much, shake things up, rearrange pictures on a wall, the stuff on your desk - look at the world with new eyes.

6) Do a random act of kindness for someone you don't know and won't ever see again. Just something small, they may not even notice much, but do it just for the joy of being nice, of being kind ... spend a day saying 'please and thankyou' get back in the habit of being grateful.

7) Forgive yourself, for a whole day, be kind to yourself. Brush away negative thoughts about who you are and what you do, love yourself the way you want to be love, accept yourself the way you want to be accepted. Negativity creeps in, steals self esteem, and leaves bitterness behind. Push it aside for the day. Be glad you are you. Wish only to be authentically you.

Well, that's it, not so daunting is it? It's a heck of a lot better than washing windows (?) and sweeping out the garage (??) isn't it? Let me know if you are in, and how it goes.

Welcome Spring ... did you bring me something?

Spring Comes Early

A letter in this mornings email box:

"Just wanted you to know that I have reason to thank you and the readers of you blog, Chewing the Fat. I found your blog when I was looking for a blog that gave positive messages about weight - I have a friend who is pretty self conscious about her size and I thought that it might help her to read about others who face weight struggles. You blog popped up when I did a search and I read a few postings and discovered that the blog really wasn't what I thought it would be. But I admit to be captivated by what I read.

I continued to look for a blog for my friend but I found myself coming by every other day to read your posts. I admit I shook my head in anger sometimes at your viewpoints. Other times I agreed with you wholeheartedly. What captured me almost as much as what you wrote were some of the people who commented on your blogs. Many were parents of kids with disabilities and they wrote such with such incredible love for their children.

Last week I was informed by my doctor that the baby I am carrying will most probably be a child with Down Syndrome. I had the test because I suspected that I was at risk for a child 'with complications'. I surprised myself by thanking the doctor for the information and then informed her that I had changed my mind and had decided to keep my baby. The doctor didn't take the news well and became almost angry at my decision. She told me not to make the decision in haste, which I wasn't. She said that I was recovering from shock, again, I wasn't. She told me to think of the consequences, I had.

It's just that as I read your blog about disability and read what these parents had to say, the whole thing seemed different in my mind. I'm thinking differently about the baby, about who the baby could be. I've looked up the names of some of the people with Down Syndrome you've mentioned. I was startled to find the lives of contribution they have made. I don't care if any of my children grow up to be janitors or a presidents, I just care that they are loved and happy. I think I'm as much up to that with this child as I would be with my other children.

I count the day that I found 'Chewing the Fat' as a big day in my life. I thank you for your time in writing it. I thank those people who parent their kids with such obvious love and hope for commenting, for becoming real to me through their words and their own blogs.

There must be times you wonder if writing a post every morning matters. In this great whole world, who knows, but in my small world - it has.

Thankyou for your blog.

Thankyou for being, kind of, this child's Godfather.

You may, if you wish, pass my letter along. Please omit my name, just until I have time to tell the rest of my family the news about the baby and my decision."

Part of my letter back:

"You couldn't have made my day any brighter. It's a freezing cold day here in Baxter, our furnace doesn't come on for another 10 minutes, but my heart is warm. Congratulations are first in order, but I wonder if you could let me know where you live. I travel a lot giving trainings and lectures, I would so like to meet you, and I'd love to meet the baby. I love the 'fresh baby' smell (not all of those smells but you know the one I mean) and I'd love to be a small part of your child's life. Let me know if this is overstepping the wonderful boundary of anonymity that we share as blog writer, blog reader. I'll respect your wishes.

I know that your letter will brighten the lives of all 'Fat' commentors, but remember that as you tell others, you can expect a similar reaction to the one you got from the Doctor. Don't let those set you back. If you've been reading the blog, we've all talked about the fact that the greatest challenge is the attitude of others. It's your attitude of love and acceptance that matters, don't give in to the negativity of others. Nows the time where you might want to reach out at beyond "Fat" to parent organizations and support groups. You are going to find the most awesome group of women and men that you can imagine. When I spoke in Vancouver at the Down Syndrome Congress, I was overwhelmed by the parents there and the bond they shared with each other and the love they showed to their children.

But I've fallen into advice giving and I don't want that, I just wanted to say thanks for the letter but also thanks for thinking deeply about what it is to be a mom, to want a child and to raise a child. Welcome to the journey. I hope to meet you, and hope to be part of that journey, but it's your call."

To Fat Readers ... consider the comment section our 'congratulations' card and sign on, this child has many many Godparents ...

Jus'am

Parked. Just sitting watching the world go by. Joe taking the shopping cart through an aisle to narrow for my chair, so I get to just park. And wait and watch. A young mother comes into the store with two children. One, a beautiful girl in a strolller, the other a boy maybe 6 or 7. Mom's got a lot to do, getting the girl out of her stroller and into the baby thingy they've got attached to some adapted grocery carts and then fold up the stroller put it away and then ... the list probably seems endless to her but her son bores quickly and then spots me.

At first he stares, but then he slowly walks over, looking right at me.

"Are you sad?" was his first question.

"Why?"

"Cause you can't walk," he seemed surprised that I needed clarification.

"No, I'm not sad," I said, truthfully.

"What's wrong with you?" straightforward and direct, I like this. Mom hears him and is about to call him back, I quickly smile up at her letting her know this is OK, she smiles back thankfully.

"Nothing's wrong with me."

"Then why are you in a wheelchair."

"Because I can't walk." The simplest answers are the best. Mom pushes the cart over closer, to listen, to supervise, I'm not sure.

"And that doesn't make you sad?"

"No, it doesn't, I just move around different than you."

"Oh," He processed it for a bit, you could see him think, "but it's harder isn't it?"

"Yes, it is, but that's OK too."

"Do you ever ask God why you are in a chair?"

"No, because I know why," I stated.

"Well, then, why?"

"Can I ask you a question?"

He nodded, with the look kids get on their face when they think that they are going to be tricked.

"Why are you a little boy?"

"I jus'am" he said.

"Well, me too, I 'jus'am' too."

He nods, satisfied, "That's cool."

Mom gathers him up and they are heading into the store, "Thanks, I've been spending weeks talking to him about why people are what they are, I think that helped.

We got into the car and Joe asked, "What was up with that little black kid you were talking to?

"We came to an agreement, he's 'jus'am' and I'm 'jus'am' and we're both OK.

"I shouldn't leave you alone."

Zhara

It must have been an odd sight. A lobby of a movie theatre filled with a diversity of disability. There were the blind people over there, the odd walkers by the consession stand and the rollers by the door. We were all waiting for the previous showing to be let out so we could be let in. The normals broke into only two categories, those waiting to see the same film and those freaked out by those they consider freaks.

The film in question is a documentary called 'Blindsight' which was playing in Cambridge at the nicest arthouse cinema I've ever been at - look at those lights. We took our seats, Joe and I at the back where the wheelchair seating was cut into the back row. The blind folks and their friends sat down near the middle, choosing a seat after the blind woman said, "For God's sake just pick a row, I don't care, I'm blind." The the theatre slowly filled, there were a wack of people there.

The movie is purportedly about a group of blind Tibetan kids being led by a blind Westerner on an expedition to climb Mount Everest. It's about much more than that, however, it's also about how blind people are treated in that part of the world. A world where the Tibetean monks preach that blindness is caused by sin in a previous life or by personal fault in this one. A world where there is even a specific word used to taunt the blind, "Zhara" which means "Blind idiot".

As I sat there watching the movie about this group of disabled kids and their blind mountain guide in a movie theatre where there were disabled people sitting all arond I understood something a new. The world has words, hateful words that 'others' use when they describe 'us'. Zhara joins words like windowlicker, spaz, retard, crip, gimp. Words that are used to denegrate our existance, our way of being in the world. But words that do something else, something subversive.

These are words that create an 'us' in opposition to 'them'. These are words that, used properly, can create community. It's been done before, f*ggot created the gay community; n*gger created the black community ... the unity of the despised is not a concept that is new to the world. We, the disabled, need to begin to understand our own need of community. We need to get over our own internal heirarchy of identities (I'm not as bad as her; He's worse off than me) and understand that while we may see the differences within disability, 'they' do not use such a finely calibrated measuring stick. Trust me, to normal onlookers in that lobby there was no distinction between, he who walks oddly, he who walks with cane and he who walks not. There was just 'Whoa look at the lobby full of Cripples'.

I remembered the early days of the gay community going to movies, concerts and lectures where the audience was primarily gay and the theme was about 'gayness' and what it is to exist in a heterosexist world. I was reminded of that here in the theatre as we together watched a film that was really about 'us' and how we existed in a world with disablist ideology and disphobic bigotry. It was a film that was meant to inspire 'us' as much as it was to inform 'them'. And quite frankly, I didn't care much about 'them' as I watched the film.

The 'Community Living' movement in Canada really focuses on the creation of community opitions for those with intellectual disabilities. But maybe we need to teach people not only to live in community but also to live as community. Maybe we need to support our artists, our musicians, our documentarians ... maybe we need to create a market for their work so that we can be seen as individuals on one hand but a healthy community on the other. Take on me, take on us.

Justin Hines, a folk singer with a disability (check him out on You Tube) appears absolutely bravely singing from his wheelchair in his videos. His new record should be sought out by people with disabilities, by those who care about people with disabilities, by those who work with and make a living from supporting people with disabilites. Artists like Raymond Hu, a painter of Japanese watercolour with Down Syndrome and Dwight MacIntosh an artist who lived for 60 years in an institution should be well known to all of us. Virginia Hall, the one legged World War II hero, should be a role model for young kids with disabilities.

We have the heros, the artisans, now we need the will to draw a boundary ourselves. This is US. And WE stand in opposition together against ... well you get my point.

Touch

It still creeps me out. I was touched, physically manhandled, and I didn't notice. Part of me wishes I didn't know, that Joe hadn't told me, that there wasn't even another way to feel vulnerable. But part of me is glad to have been put on alert - now I can be more watchful, more wary, more careful.

We had gone to one of those independant cinemas that show foreign films alongside other 'arthouse' kind of fare. I really wanted to take Joe to see "The Counterfeiters" because I knew that he would really enjoy it - it's his kind of film. This is no sacrafice because I knew I'd like it too. Parking was inconvenient, the disabled seating was more like sitting in a prisoners box in a British courtroom, and many of the patrons were snooty to the point of parody ... but that's the price you pay for wanting to see something out of the mainstream.

The movie was amazing. It managed to tell a story well, characteres were developed, themes explored, there was much to think about and even more to talk about. Going out of the theatre Joe was walking beside me, talking with me, as I was pushing myself towards the door. I didn't need his help because there was a slight slope and gravity was helping me move fairly quickly even though I was on carpet.

We got to the door, Joe held it open and I gave a mighty push to get over the small bump there and then I sailed on down to the side of the road. I put my brakes on and Joe went to get the car. That's what I thought happened. That's not what happened.

On the way back to the hotel in the car, Joe asked why I hadn't said anything to the man who grabbed the handles on the back of my wheelchair and pushed as I went through the door at the cinema. I immediately felt sick. Even maybe a little dirty. I had been touched, grabbed, pushed, and I didn't notice. I told Joe that I didn't notice him, anyone, touch the chair. I had been engrossed in our conversation, busy with pushing myself through the door, intent on getting down to the side of the road without Joe having to help. My mind was busy with other things, I didn't feel two hands touch me.

My wheelchair is a mobility aide. That's what it is when it's sitting empty at night. But when I'm in it, my wheelchair is me. Touch it, touch me. I have a 'thing' about touch. I think it's wonderful when it's wanted, I think it's abusive when it's not. I don't think there is much in between. As someone who's boundaries have not always been respected, I really care about them being respected now.

The intent of that man, the one who grabbed me, in his mind was probably 'Let me help' ... the result of his actions was 'Oh my God, I'm seen as helpless, vulnerable ...'

I still feel sick inside.

Last Night

Someone told me a sad story. And I can't shake it off. Her face appears in my mind, unbidden, and I see the pain etched there. She's barely holding it in. She's barely getting through the days. She has marinated in hurt, it's seeped into her eyes, the tone of her voice is tinged around the edge, even her feet have no spring when she walks.

For four or five minutes after she told me, I sit quiet. My mind has to unfold several times to be large enough to understand what she has told me. What happened to her is so big, so horrible, so unsurvivable that I've never even conceived it. Finally when I grasp what she says, I can't feel empathy for her - a pain that intense is terrifying even from a distance. "I'd get burned, I'd not manage," I tell myself and then refuse, absolutely refuse, to feel more.

Someone told me a sad story. And I can't shake it off. I woke last night, over and over again, with the images that her words made forming in my dreams. I became fearful of sleep. "It didn't happen to me, it didn't happen to me, it didn't happen to me," a mantra in the night to keep back fear. I picture the moment she came to speak to me, I could tell that she was carrying a burden, she shared it with me to validate what I was saying. To let me know that what I was teaching was real, to keep it up. She was telling me because I think she thought that I would be in the unique position of fully understanding the horror of her situation.

I was.

I did.

I'm still shaken.

All I could say to her was, "Are you alright?" A silly question, an impossible question. But even though I didn't know her, I wanted her to lie to me, to tell me that she was managing. She said that she was getting by. And then I said, "That shouldn't have happened to you." I could see something much like gratitude in her eyes. She knew I meant it, she knew that I wished that it hadn't happened and even though my wish had no power it had, at least, authenticity.

The only thing I could give her was a moment to listen and a wish that she had been spared. And now I am carrying a wee bit of her pain. I pray it makes her burden lighter - even for a moment or two.

Someone told me a sad story.

And I can't tell you, it's a unique story, a story that would identify her, and I won't expose her. I'm only hoping that she's reading this and knowing, that I get it, that understanding has seeped it. Because sometimes it helps to know that you aren't crazy, that you have a right to howl in the night, that the it's possible to hurt but not bleed.

Last night, in particular, I was with you.

I hope you felt less alone.

Oh Nuts!

Gentle Readers, a few weeks ago I wrote a blog about being out in my wheelchair in the bitter cold and having my skin freeze to the metal of the chair. Betsy, of the "Bits of Betsy" blog wrote me quite a long letter about a memory she had while reading my blog. I thought it was really funny. I asked her permission to put it on this blog and she gave me that permission. I've saved it up for a day when I had little time. I finished my three days at Seven Hills and now am having to get my mind ready for doing two consultation days in Boston. I need to reorganize my mind. So, Betsy, thanks for this Bit of Betsy - and thanks for giving me the opportunity to publish something really fun, and take a day when I needed it myself.

Hi Dave!

Your blog today reminded me of a very funny story that I thought you might enjoy. You'll see why I didn't post it as a comment! It goes along with the freezing genitals, lol.

My daughter has T21, and is also physically disabled - she has very bad hip dysplasia, and has been casted from armpits to kneecaps for nearly 6 months now.Anyway, one of the few activities that she was able to enjoy (pre-casting, of course) was swimming.

I took her and her friends from school to the local hospital, where they have a therapeutic swimming pool each week. The water was as warm as a bathtub. One Tuesday afternoon, our group gets in after some seniors who had been swimming. One gentleman was using a walker, and had his wife assisting him getting out of the pool.

After a few minutes, she comes out of the change room, and calls out to the entire pool "Does anyone have any vaseline?" Um....no.So then she tells the lifeguard and me that her husband has sat down in the plastic chair in the bathroom to get dressed, and somehow, his testicles have fallen through one of the slats of the chair!!! She has tried to slip them back up, but they have obviously become irritated and now, swollen.

She asks us to come and help, but obviously, this needs an expert's attention, lol. So, we call the nurse's station at the hospital, and try to explain what happened. Soon, two nurses arrive, doning blue glues and a big tube of ky jelly. They lube the gentleman up as much as possible, but to no avail.Here's the funny part - there is now a small crowd gathered; the wife, the lifeguard, myself, and two nurses. The whole time, the man is bitching at his wife, "I don't know why you have to go and tell people my business. You can't stop talking for anything." Its obviously a complaint she has heard over and over again through probably many years of married life.

We are trying hard to offer this man as much dignity as can be given, considering all of the work that has been done to help this naked man, with his testicles danging through the slats of a chair, has had to have been done UNDER the chair!And, had she kept "his business" quiet, we may have noticed him trying to leave the pool area with a plastic chair attached to his testicles!!!!!

The story doesn't end there - the next department that was called was the janitorial department!!!! Two janitors had to come with cutters to cut the slats of the chair away from him!!!To give credit to the old man, he walked out on his own accord, shuffling along with his walker, whispering under his breath, "you gotta tell everyone my business, don't you?"

~~~~~~~~~~So, there you go, Dave, consider that a funny morning story, or a real warning to you if you are trying to get in and out of a shower onto a plastic bath seat. Because you never know, Joe might be on your blog, "telling everyone your business!"Have a great day!

Betsy

http://bits-of-betsy.blogspot.com/

Saintly Bars

Sometimes disability brings a 'back to basics' approach to living. I can swear that as a non-disabled person I could go months and months without thinking about pooping, having a poop, looking for a place to go poo. Months. Now, poo has entered into my head at a dizzying rate. When we stop on the road we have to find if the gas station or rest stop has a 'poo friendly' place (other people call them accessible bathrooms but that's just a nice way of saying 'place where bent and crooked people can poo'.)

Some of them call themselves 'poo friendly' because they've got bars. But the bars were put on to look decorative to the unbent people who don't need them anyway. One bathroom in the Southern States, I'm not kidding, had two bars in the shape of a cross that were placed on the wall six feet opposite the toilet. You could see the bars, be inspired to pray, but you couldn't use them. The bars, for those who don't know, are not for places to hang towels, they are to bear our weight as we lift our odd bodies from sitting, or crouching if they have wee kiddie toilets, to standing.

There may be, somewhere in a government file, regulations for how to make a toilet poo friendly, but no one seems to know them. For me, and this is only for me - others with disabilities have other poo needs, I like a tall toilet and a grab bar within reach. Not much to ask, but it seems like a huge problem for so many places.

I feel sometimes that I need to stand on the top of the mountain and scream, "As God is my witness, I need to poo!"

Take my hotel, the one I'm sitting in. We booked it as an accessible room (poo friendly) and out side the door it says HANDICAPPED ROOM. Nice. But I wanted to do a couple things when I got in so it wasn't till bed time that the need to poo entered my head. The bathroom had no bars, a low toilet, and no adaptation for a disabled person. I called downstairs and mentioned this to them. The clipped voice said, "That is our disabled room sir." I explained that it might be listed as an accessible room but there were no bars in the bathroom and it was a low toilet. "Sir, you don't seem to understand, that is our accessible room."

"M'am you don't seem to understand that I need to poo."

Believe it or not, that got action, weird action, but action, "I'll notify the manager sir." She promised to be back to me in ten minutes. Fifteen minutes later, I'm on the low toilet. I'd played around with the room and found that the open door placed the handle right in front of the toilet, I figured I could grab on and haul up. I told Joe to stay out of view, I always believed that whatever magic is left in a relationship of 38 years can be destroyed in 5 seconds by watching your partner poo.

Well, I got up, uneasily and unsteadily and fearful that I'd pull the door from the wall, I got up. The manager, apparantly upset that I needed to poo with no where to poo said that a carpenter would put a bar in the bathoom the next day. She wanted to know where to put it. Remembering the grab bar tribute to Jesus, I told her to put it in a straight line above the toilet paper roll.

It was there when I got home. For the rest of the week I can poo freely. And, to make each poo better, I know that other disabled people who come here expecting the 'accessible means bars in the bathroom so you don't have to grow old waiting for the maid in the morning' will have the assistance they need to get up.

It's not even 7 AM and I've had a poo-tastic day. And I'm wishing one for you too.

Normal Days

After having been held captive by a massive winter storm it was nice to get back on the road. We crossed the border and then headed east on I90 for hundreds of miles. We stopped at the first service center on the freeway. We needed to fill one tank and empty others. The disabled parking area was the only one not plowed and the ramp was completely covered in ice. We parked near the front entrance and made our way up the small ramp there. After using the loo I headed into the gift store, I am a gift store kind of guy, while Joe went to Tim Horton's for more tea and pop.

In the gift store was a young family. They were of East Indian descent and the parents were locked in battle with their youngest child. The child had picked up a souvienier of the silly variety and the parents were simply saying, "No, you want it now but won't want it five minutes from now." Amidst screaming, crying and full body protestations, they had to surgically remove it from the child's hands. Mother walked out of the store in frustration while father picked up the now limp child and carried her out of the store. The clerk and I glanced at each other and smiled.

Then a couple hours later we stopped to get something to eat. This is hard for Joe who believes that the purpose of the journey is to arrive - stopping for bathroom breaks is a challenge for him, gas is an annoyance, but lunch - it sends him into shock. But I needed and wanted to have lunch. We went to the food court of a mall that was just off the freeway. I could easily watch others because by then Joe wasn't speaking to me. "No, I'M not hungry" was his response to my question about what he was going to get - that was the last word we spoke for fifteen or twenty minutes. I watched people. Joe watched minutes disappear, every one leading to a later arrival than anticipated.

Anyways, there was a young mother with a child in one of those harnesses with a leash. The kid was madly off in all directions, she looked tired. Once food was got and table was found, she had a few moments of battle as she tried to convince her boy, whose name in print would have been Jonathan, but in spoken word JONaaaaaaaacomeonnow!!THAN. Jon squirmed in her grasp and she worked to get a bite or two into him. Jon's eyes kept glancing around for the perfect moment to escape. Not the picture of Mom and kid with Down Syndrome that they show on commercials.

Finally in the hotel. By then Joe had long gotten over the fact that we had stopped, pulled into a mall, got out and had lunch (well, I had lunch because he wasn't hungry who needs lunch at 2:30 anyways) and we were back to chatting again. I wanted to spend a few minutes writing out some notes for a post on this here blog.

You see it struck me, that little squabble with the East Indian kid in the rest stop, the kid with Down Syndrome squirming in the food court, Joe and I spatting because it filled time in a 9.5 hour drive (which could have been a 8.75 hour drive) ... this is what people do. That's what parents cope with, that's what couples get into. There is stress in parenting. There is stress in relating.

Perhaps disability sometimes gets blamed for someone having a normal day - a day full of stress, a day full of spats, a day full of silly things taking on huge importance.

Perhaps it's because we're human beings trying to manage that causes stress.

Maybe it's as simple as that.

6

"Could you do me a favour, could you write a blog that has 5 or 6 things about you that have nothing to do with your disability or your work with disabled people ... just some facts." This letter comes from a woman who says that she reads Fat and "I just can't get a picture of you in my head, I just have an image of a one-dimensional person who has really limited his life. That image makes me very sad."

Well, we can't have you sad. So, I'll do that ... kind of reluctantly. While I figure its my job and my mission to look at disability, to talk about what I think, notice and learn - getting away from that into more private areas is a tad more uncomfortable for me. But here goes:

Fact One: I can cook without a recipe. Joe's a great cook but he has to follow a recipe. When we want something to eat, if we're just winging it, it's up to me. I can look in the fridge, see the food that's there, and come up with a recipe on the spot. This has led to us having family meals that are uniquely our own. Vegetarian Open Faced Sandwiches, Cabbage Roll Casserole, Mexican Stuffed Canaloni - all are home grown recipes that we now have often. It's fun inventing new combinations of food. I love cooking for others - it's, to me, kind of a spiritual thing.

Fact Two: My obsession with tea had reached the point that, on this trip (I'm sitting in a hotel in Framingham right now) I made my own tea bags. That's right. I bought empty tea bags, got a special spoon for measuring tea into tea bags and then sat at home and filled the bags with my favourite loose tea. I then packed them carefully in a small container and worried that when we crossed the border I'd have to explain little white bags of "yeah right it's tea" to a border guard.

Fact Three: I have a sense of humour that was forged in grade three and has remained there. I find burping funny and fart jokes - they are the best. I remember saying to someone that I thought a burp was just an uppity fart and getting a look that was even funnier than the line. That being said, I don't like slapstick comedy and never laugh at it. I find words funnier than silly faces, silly walks and silly pratfalls.

Fact Four: Though Joe and I have yet to find a church home in Barrie, my faith is deeply important to me. I can't imagine, for me, a life without prayer, a life without faith. It's true that I'm often really critical of the sin/disability connection - and the 'let me heal you' kind of faith, but that's not faith that's prejudice. I'm talking about faith as a bedrock part of personality, and an almost unconcious set of practices throughout the day.

Fact Five: Sometimes I complain about getting tired of it, but I do like being on the road. Staying in hotels, eating restaurant food aren't the greatest, but meeting people, doing presentations, seeing how things are done in other places - that's so cool. I'm up and eager to go to Seven Hills where I will be presenting for the next three days. I'm doing a series of classes for their staff. What a kick. So I look forward to each and every trip and each and every training that I do.

Fact Six: I have always thought that the guys who work in the produce section of grocery stores are better looking that the guys who work in the meat department. Could someone explain that to me?

Well, now there was an entirely frivolous blog. I hope that you are no longer sad and that I am as well rounded in your mind as I am in real life. I had got up this morning wanting to write a blog about three families I saw yesterday on our 10 hour drive - but your plea caught me when I checked emails this morning. And, well, I live to serve.

Limp

It's a sweet picture. One of the old fashioned kind. There is a little girl with sun kissed blond hair wearing a striped summer dress with a white collar. Beside her is a cat sitting close enough for its soft fur to touch the skin of her arm. Sunlight brightens the fur on the right side of the cat, if you could touch the cat, its fur would be soft and warm. They are both looking into the distance, we can only see their backs. Then there are two voice bubbles above them. She is saying, "I hope the Easter Bunny has a big basket of goodies!". The cat is saying, "I hope he has a limp."

I admit it. I laughed. I put the card in my wheelchair bag and continued shopping. About five minutes later, in a different section of the store, I stopped. I took the card out of my bag and looked at it again. I was filled with horror. I had laughed at this. Laughed at the idea of a predator seeking out someone vulnerable, someone with a disability. Knowing that this card would be bought by hundreds and they'd all laugh too. The hunting down and hurting of the disabled is kind of, well, funny.

Maybe I'm over thinking this.

But.

People with disabilities are more likely to be victims of crime than anyone else.

People with disabilities are more likely to be victims of violent crime than anyone else.

Crimes against people with disabilities are less often punished than crimes against anyone else.

People who commit crimes against people with disabilities are likely to get lighter sentences than if they committed them against anyone else.

People with intellectual disabilities are considered 'good victims' by predators because their testimony is more easily challenged and less likely to ever be heard in court.

People with intellectual disabilities are trained to be subserviant, compliant and silent.

People with disabilities are most likely to be victimized by those paid to be trustworthy.

So, no, I don't think the card is funny. I don't think that it's possible to 'over-think' violence against people with disabilities. In fact I think we've been 'under thinking' the issue for too long. I mean we've known for 20 years, when the first research came out, that abuse was a common life experience for those with disabilities. But what have we done? What's changed? If we are guilty of anything, it's apathy in the face of a catastrophy of statistics.

I sat in the store with the card in my hand, and knew. Knew that I had spent the last two years at Vita Community Living Services working on one of the most important issues that we have to face as a human service system, as a society. The reduction of the abuse and victimization of people with disabilities by care providers. For two years we have worked at radically changing the system. We've got the most stringent abuse reporting policies possible. We've put in place training for all people with disabilities, no matter what their level of disability, on bodies and boundaries. We've taught the word 'no'. We've made sure that people with disabilities have a collective voice. We're about to begin teaching disability pride - self esteem, and ways to communicate anger effectively.

We can't, and don't want to, eradicate disability. But we can certainly eradicate the teaching of subserviance. We can build skills in people with disabilities such that they will be heard. If by no one else, they will be heard by us as an agency. Every staff is now going through training on abuse reduction and abuse reporting. Every staff is going through training on respecting boundaries. Every staff knows that we are serious about being a safe place. We changed our mission statement to become the first agency in the world that states up front, in our mission statement itself, that we will be a safe place for people to live: Providing Safety, Practicing Respect, Promoting Community. We know what we want to be ... a safe haven. All the rest is gravy.

We know that there are cats out there looking for rabbits that limp. We are aware that disability brings out the best in some and the worst in others. We can't control that, what we can control, we will. We can ensure and promise the access to information. For people with disabilites. For care providing staff. For police. For everyone. We can ensure that silence will not rule, will not be part of our practice.

In a few months we will be bringing people from Liverpool's Witness Support Programme to do a presentation in Toronto about how to support people with disabilites going through the justice system. A groundbreaking and revolutionary approach that makes justice accessible to people with intellectual disabilities. Part of our plan is to talk directly to agency staff, the police and Crown. To make sure that everyone, everywhere, knows that there is no excuse for continuing the pattern of violence.

The card is bent in my hand now. My mind races through all that we have done, all that we are doing, and I wonder if it's enough.

Well, it may not be enough.

But it's one hell of a start.

Watch out cat, cause the bunny may limp. But it's got a trick or two itself. You just might be surprised.

Smile

"Here Mom."

"Thank you sweetie."

Everyone was getting a tad impatient. Because we are all terribly important and terribly busy. But she didn't seem to notice or, more likely, did notice but didn't care. Her boy was on his tippy toes reaching into the cart and handing her one item at a time. His short arms were just long enough to reach, but not without struggle, not without time. When done, he looked back at us and smiled - the smile that has raised millions for Down Syndrome support services all over the world. It's a keeper smile, that's for sure.

I thought of him, of them, only this morning as I sat down to write this blog post. The story I wanted to tell was of our shopping trip yesterday to Zehrs in North Barrie. We had headed to a movie but by the time we got up there the snow was falling thick and fast, we realized that by the time the movie was over and we went to do the grocery shopping the roads would be dangerous. So we skipped the movie and headed right to the store.

Joe let me off right at the front of the store and then went to park. He came and and we started shopping together. Maybe the snow created a Christmassy atmosphere because everyone in the store seemed hell bent on helping me as I shopped. All I had to do was stop to look at something and someone was asking to reach something for me, get something for me, or expressed concern that I was 'all right'. I was in a 'just be polite' mood and I thanked everyone for their offer of help as I refused the same.

I could tell by the look on Joe's face that he was relieved that I wasn't going to get all strident with everyone. There are times he just wants to shop, be together without 'issues' with disability getting into the mix. And, frankly, there I times I want the same. So we just shopped, picked up some treats we couldn't really afford but - it was a snowy day.

Joe got in line at one of the checkout tills and I told him I'd roll on over to the front of the store. I was brought up short just short of my goal but a rack of bargain DVD's. This rack was just in front of one of the self check outs so I parked, got my reading glasses out of my wheelchair bag, and began to browse. I love to browse. Time passes so deliciously when browsing, I think. A moment later a guy, about my age (why does my age look older on them than it does on me?) asked if the self serve stand in front of me was being used. I said, "No go ahead," and went back to browsing.

I glanced up at him and he had one of those really pleasant faces that men get when they are old enough to be grandparents. He was picking up each item, finding the bar code and scanning it in. Then all activity stopped he was looking at a tomato with great frustration. Then he looked over at me and said, while thrusting the tomato in my direction, "Can you read that number for me, I forgot to bring my glasses." I glanced at the yellow sticky on the tomato and read out several numbers for him. He keyed the numbers in and went on with his purchase.

A smile must have flickered across my face because he said to me, "Did I say something funny?" His tone was definately not hostile but intensely curious. I was a bit startled, I hadn't felt the smile - my body must have been having it's own private response to his request - like it was secretly pleased to be asked to help. "No, no," I stumbled at bit, "It's just that the whole time I've been here in this store, people have been thrusting their help onto me, I didn't want it, didn't need it, didn't ask for it - but they offered anyways. It was just really nice to be asked to give help, not take it."

He nodded as if that all made sense to him and then went back to scanning items.

Now I get what that kid was smiling about. I get what that mother was doing. She was letting him be able, letting him help, letting him do what he could. His smile said to all of us that he could do things to help - he didn't need to take constantly. I'm not sure anyone got the lesson, being blinded by the beauty of that smile. And I don't think I really did myself, until now. Realizing that my body smiled when being asked to give, to assist someone else I kind of get what was going on. What kind of parenting was happening.

It's nice to be needed.

It's nice to give help.

I'm so thankful that he forgot his glasses. That he came to the till in front of me. That he had me read his tomato. It was a small thing, but it changed my perception of the day. Of myself. Something rearranged inside of me. I knew I still had something to offer.

That was the reason, I think ...

for the smile.

What It's About

It's the big moment in the class.

Thirty people with disabilities have come to this small room in Orillia. They are there from Barrie, Midland, Collingwood and of course Orillia. The class is about personal power, about abuse prevention, about pride in self and membership in group. I sat in my wheelchair watching people arrive. There were three staff there, all training to teach the workshop themselves, and they were making the room ready. There was an air of anticipation in the room.

There wasn't an empty seat when we started. And from the get go the group decided to learn and to have fun. It's great teaching any group of people who have come with the intention of learning and participating. When I asked questions hands flew up with the desire to answer. Every role play had four or five people volunteering to help out. They laughed at my jokes, laughed at themselves and sometimes the room rocked with the noise. I could see people passing by in the hallway through the window and their eyes would glance in to see what the fuss was about. They'd see a people thought incapable of learning - fully focussed and fully on task.

Then there is the role play that is the 'big moment'. I ask for the woman with the loudest voice to come forward. Joe stands at the back of the room and she stands up front, beside me. Joe says, 'Hey you want a ride?" Her job is to yell 'no' so loud that his hair moves. Her first attempt is good, but his hair doesn't move. Then we get up two more, then four more, then 6 more, then we get up a couple of men, a couple more men. Then we get up a few staff. Then we get up anyone who wants to come up. Now I can barely see Joe through the crowd at the front. There are only one or two people sitting down, the rest are up with me at the front.

Joe says, "Hey you want a ride?" The whole room yells, "NO!" and Joe flings himself against the back wall. A cheer goes up that lifts the roof. It's fun. I love that moment. The woman standing next to me, a middle aged woman with Down Syndrome, laughs so hard that she wipes tears from her eyes. She says to me as she makes her way back to her seat, "This is what it's all about."

"Saying no feels good doesn't it?" I say, people are still streaming by us to get back to their seats, she looks at me and says hestiantly, "Yes."

"That's not what you meant?"

"No," she said.

"What's it all about?" I ask.

"Not being alone."

Of course. The class is about abuse prevention, but it's also about much more. It's about community, it's about learning from each other, it's about discovering your own adequacies, it's about being strong individually but powerful as a group.

It's about ... not being alone.

That's why I love that moment in the class, I think. Sitting there surrounded by disabled people in disabled bodies having a powerful moment together. There is the loss of aloneness.

This time it's me who wipes, discreetly, my eyes.

We Need To Talk

Every morning before I write my blog I check my emails. Because my address is in my profile description I'm now getting a fair number of emails from 'Fat' readers. Often the emails are wonderful. There are two I've got on line to publish - having received permission from their authors to do so. These are usually comments to a blog that are either far too long or far too personal to be put in the comment section. I enjoy reading these.

I also get a lot of emails from readers who bring stories to my attention. I first heard about Brent Martin's murder's conviction via a personal email. I first learned about the famous 'wheelchair dumping' the same way. Again, I appreciate getting these emails as I do sometimes miss things on the news - or with the state of disability news reporting - sometimes things are simply not reported to a national or international audience.

But over the last few months, something different has been happening. Some people are writing and telling me what I need to write, what has to be exposed. Thse emails make me feel a wee bit uncomfortable. I appreciate the passion behind the sentiment, but I don't want to give up decision making about blog content to others. I want this blog to be a balance of commentary on real world events regarding disability, but I also want this to be a blog about the personal observations of a disabled guy who works within the disability service sector (that would be me).

My problem is that some of the more recent emails have been quite angry. That I didn't write about the 'wheelchair dumping' incident in the States was, in the opinion of one reader, a missed opportunity for me to make the point about crimes against people with disabilities. OK, that's an opinion but the writer was very, very angry at me for 'ignoring' a real issue to write 'personal drivel'. Much like the comment made by Pat (who owned up and apologized) in an earlier post - there is real anger directed at me for not writing the blog that they 'have come to expect'.

I think we all need to slow down here. Chewing the Fat is a 'personal' blog. I don't work for a media outlet, I don't get paid for writing this ... it's just a blog. I feel that I have a right and an obligation to keep writing the blog that I envisioned and to do that I have to retain control over all editorial decisions. But I have to say, some of the blasts I have received have been both hurtful and frightening. One in particular had Joe saying,"Maybe it's time to give up the blog."

Again I want to clarify, because I really don't want to be misunderstood. I'm not talking about the comments on the blog that disagree with something I said. In fact, I love that. I love hearing divergent opinions and see how people have different takes on the world. Disagreement is cool, it means that there is a free exchange of opinions. That's not what I'm talking about here, I'm talking about angry personal attacks on me or my character, even worse are vague threats of harm.

Without exception, I encourage those with strong views to start their own blog, write what they think needs to be written. I go to a lot of other disability blogs and in fact have to be careful about how much time I spend in the disability blogosphere - there is a real world.

One other thing, I have been called aloof because I don't respond to the comments on the blog. Arrogent has been another word. I said in an early blog, and it probably bears repeating, I have made the decision to not comment regularly in the comment section. I find that as I work every day, full days, I travel and tire from the trips, that I have only a certain amount of energy for maintaining 'Chewing the Fat' ... and that goes into writing these daily posts. I worry that if I take on commenting to the comments that I wouldn't have the time or inclination to write a daily column.

One thing that I have found that readers don't sometimes understand. Ummm ... it takes me way longer to write this than it takes you to read it. Please don't imagine that I get up, sit down, and spend 5 minutes typing, and then publish the blog. A blog takes anywhere from 2 to 3 hours to conceptualize, write and refine. I'm afraid that's all the time I have. I read each and every comment and sometimes those comments have led me to write a new blog. But, if my lack of comment on comments is an irritant for you, accept my apologies and understand if I had a wee bit more time in my day, I'd comment on comments.

Ultimately though, I still want to get email alerts for news stories and other items of interests, I love the longer responses to my blog - that's cool. But could we tone down the anger, stop the threats and eliminate the presumption that Chewing the Fat is anything more or less than Dave Hingsburger's personal blog.

US

Yesterday as I was wheeling myself around Sobey's, our local grocery store, I felt wonderful. I hadn't been out anywhere where I could really move for several days. I saw a long aisle with no one in it and I 'ran' down it - pushing the chair as hard and fast as I could. I swear I could feel the wind in what's left of my hair. It was, wonderful. I slowed myself and rounded the corner. Forgetting, momentarily, what I was (who I am seldom matters) and found myself being stared at by a mother and child. Mother pulls child into her and away from me, like I had some disease that her innocent child could contract.

Every disabled person understands that there is a deep and abiding social prejudice against disability.

I was 'on line' chatting with a new friend of mine, also with a disability, who was telling me about having recently been told that her disability arose from a sinful state. That she represented, bodily, the ugliness of the human soul. That she needed to 'wash in the blood of Jesus' and receive healing in her heart - the healing in her body would follow.

Every disabled person understands that there is a deep and abiding social prejudice against disability.

A few days ago, in the course of a consultation, I spoke with a mother of a little boy with Down Syndrome. She was telling me that at her local day care - parents have petitioned to have her son removed from the day care. They don't want their children being around 'one of those kind of children' and they want their child to be raised in a 'healthy atmosphere'.

Every one who loves a disabled person understands that there is a deep and abiding social prejudice against disability.

A few months ago my boss at Vita had to go to a community meeting to settle down neighbours upset at having a group home with disabled people on their street, in their world. She told me the story with a tired voice, like she's fought this battle for far too often for far too long.

Everyone who works with disabled people understands that there is a deep and abiding social prejudice against disability.

So why don't other people get it?

I've recieved several emails from people about the judgement in the case of Brent Martin. The boys who brutally beat him to death all received life sentences. Fine. Good, even. Some kind of justice. But at the same time, no justice. The judge did not in any way relate the crime to Brent's disability. This will not go down in the books as a disability hate crime which it so clearly was. Brent will die simply a victim of drunken youths. His death, ultimately, may not matter. His martyrdom will be taken from him, from us. From we who need his death to matter.

Why?

I recieved a snarky email from a Latimer Lover who tells me that the court stated that Tracy's disability had nothing to do with her murder. That I misunderstood Latimer and his motivations and since the court said disability was irrelevant then disability was irrelevant. Yeah, right. If Tracy had been a bright child, a talkative A student, who suffered from pain - her murder at the hands of her father would have been seen in the same light. Please. But the court refuses to 'see' her disability. To acknowledge that there is a social prejudice.

Why?

It has only been recently that the words 'disability' and 'community' have been used together. Only recently that we have been acknowleging in language that there is a collective sensibility of those of us in chairs on canes, crutches and walkers. That those who learn differently, walk differently, talk differently - may be united by difference. It is our community, the community of those with disabilities, those that love those with disabilities, those that support those with disabilities - that must become forthright in talking about prejudice when it occurs. Confronting disphobia when it happens. Using the word 'bigot' to describe those whose prejudice guides their actions.

It's up to us.

Because we are failed by others.

Feelings

"Can I say something?" she said as she sat down in one of my office chairs. I swiveled away from the computer screen and saw that she was bringing me the photocopying I had requested. I could tell from the look on her face that something was bothering her.

"Is everything alright?" I asked, concerned. I like her. She is a woman with a disability who works at the front desk, who answers phones, does photocopying and jokes with Joe every single time she sees him. I've never said it, but I like the fact that the office has people with disabilities working as full time employees. It seems odd that agencies that serve people with disabilities often don't employ them. Anyways, as I said, she looked like something had upset her.

"I don't like this," she said, her finger tapping on something on the front page of the photocopying, "I think this is just wrong." I couldn't see what she was pointing to so I asked her to let me see what brought such strong emotion into her words. She handed me one of the photocopies and asked me to read it, "Do you see what's there?"

I looked at it and at first I could see nothing. I've photocopied this many times before. It's a very old article that was written by Susan Ludwig and myself that described a feelings education curriculum. My eye dropped down to the title of the article. She saw that I'd skipped down and she said, "No, up here," and reached to point to the word "Retardation". The Journal's name, Psychiatric Aspects of Mental Retardation was blazed across the top of the paper.

"This word is wrong, it hurts people. I don't think it should be used."

OK, she's right. I explained to her that the article was nearly 20 years old. That the journal had changed it's name so that it no longer uses the word. That it comes from a time when that word was more commonly used.

"It doesn't matter," she said, resolute, "it hurt people then and it hurts people now."

I apologized for the fact that she had had to look at this word as she made the photocopies. It was thoughtless on my part and I won't ask her to do these again. She nodded, brusquely, and rose to leave. "People shouldn't use words that hurt," she said as she left.

I held the photocopy in my hands. I looked at the offending word. A word that has caused so much pain for so many people. A word that flies out of the mouths of teens at an alarming rate. A word used by professionals to distance and degrade ... a word with history.

One of the first times I ever met Susan Ludwig, she told me that she was teaching a class to people with disabilities. She had come up with a curriculum to teach feelings, to recognize feelings - to identify feelings in others and to speak up with feelings had been hurt. I remember, all those years ago, sitting with her as she explained the curriculum to me. I was taken by it's simplicity and it's power. Together we wrote up her work and had it published. The goal was to help people with disabilities, a people who were programmed out of 'anger' and drugged into 'happy' to understand that their feelings were legitimate.

At that time, all those years ago, I couldn't have imagined a strong, powerful woman sitting down and telling me that her feelings mattered, that words hurt her, and that things needed to change. A woman who tapped at an offensive word on a page of photocopying and explained how she felt about having to see that word. Wow.

Somehow, somewhere, I know Susan Ludwig is smiling.