Sunday, August 31, 2008

WheelTrans and me

I am officially a cripple.

I have a membership card and everything.

Shortly after moving to the city I contacted WheelTrans, the city's transit for those with disabilities, about using their service. After several failed attempts to get a call back by leaving a message on their answering machinge, I tracked down an email address for customer service. The responses then were quick and efficient. I was informed that I would need to go for an evaluation, I needed only bring myself and be prepared to answer their questions. I was suprised that I didn't need a note from the doctor with the box 'Yep, he's a crip' ticked off.

Joe and I showed up at the evaluation after having a hell of a time negotiating the curb getting to the building and then struggling through a disabled door that didn't work. I mentioned this to them, thinking that it was odd that the building where evaluations were held regarding disability was so difficult to maneuver. I got a bored, 'We only lease this space, you'd need to take any concerns elsewhere' response. OK then.

Joe waited outside whilst I went in to be evaluated. A young pup of a guy had a form and he asked me questions. The first was something like, 'Why do you want to use WheelTrans' my response was something like, 'I can't walk'. Then he asked me various questions about my disability. The questions were vague, at least to me they were, and I gave complex answers. At least to him they were. So he worked at writing down something crafted out of my responses. He kept asking about my balance. I kept answering that I fall over but not because I have no balance but because I have no feeling in my legs or feet.

Afterwards, I said to Joe, I should have just said, 'Yes' to 'Do you have poor balance.' I tried to be straight out honest. I had been told that it would take two weeks for them to decide. The two weeks came and went. I began to think that they were just figuring out to write, 'You should have said YES when we asked if you had poor balance' in a letter.

This morning I was shifting the junk mail from one corner of my desk to another and a letter fell out. It was from WheelTrans. I opened it expecting the worst hoping for the best. There was no letter. There was no summary of my interview. This threw me off balance. What there was, though, was great. I've got a membership card. Something I can show off to others, membership has its privileges.

I'm hoping to book my first trips on Thursday and Friday. I want to take WheelTrans to work. That will save so much of Joe's time and give me the added sense of doing it on my own. Once fiercely independant I've grown too accustomed to dependance. This will be nice. I'm still depending, but on someone else.

So I've got a gawd-awful looking magnet on the fridge with all the numbers, I've got a membership card.

I'm good to go.

Saturday, August 30, 2008


I'm stealing the idea for this blog. Yesterday I was just popping from blog to blog and I read one that I enjoyed. I wish I'd written the blog name down so I could credit the source, oh well. The person was responding to a challenge to come up with five adjectives to describe themselves. In their post they wondered if people would list their 'difference' in that list. Would the word 'gay' or 'disabled' or 'fat' or any of a number of possibilities be listed. How deeply or closely do you identify yourself with what you are - would you list 'woman' or 'man', 'black or white'?

I tried it out on Joe and he came up with five adjectives and afterwards I told him that I thought it was interesting that he didn't list 'gay' as one of them. He became a bit flustered (they're like that) and said, "It didn't even cross my mind." Then he asked me to do the same. Well, it was a bit unfair because I'd read the blog and knew that the blogger was interested in how people percieve and incorporate their difference into their view of themselves. I can never know if I would have put either gay or disabled into my list, after receiving a prompt, it's hard not to.

I do think I would have put 'disabled' into my list because I spend so much time on disability issues and concerns. I don't think I would have put 'gay' into my list because it's just been so who I am for so long that I don't think about it as being separate from me at all. So what were my words...

The first two ... committed and passionate ... came easy. I have been committed to the cause of justice, freedom and respect for people with disabilities for almost all of my life. I have never waivered, never been really tempted to do other things. I am a true believer. I believe that we are on the right road, making the right journey and, most importantly, going in the right direction. I believe we are miles from our destination to be sure, but we are also miles from the starting line. It's a trek. Out of this committment comes passion. Passion fuels my belief and gives me the energy to do what I do.

Those two words came easily. The next were much more difficult. The tendency is to simply list positive words, but I'm more complex than that. I am not just a ray of sunshine. So I chose 'outspoken'. This can be a good thing, it can be a bad thing. Just like the next word. 'Impulsive,' I tend to react and just do something because I think it needs to be done, it needs to be done right now and if you won't do it, then screw it, I will. I remember a couple of years ago when I decided that I wanted to work for an agency on a special project. I told a friend of mine who shook her head and said, "You'd make the worst employee." She saw my need to speak out and my impulsive nature as being something that would drive any executive director mad within weeks. Well, I've been at the job for over two years now and, last I checked, the boss was still sane - maybe with a tick or two, but still sane. It's been interesting trying to marshal my outspoken nature and impulsive approach into the need to work as a team.

The last word is really difficult because it's the last one and so many are in the running. I'm going to say 'thoughtful' not because I am that, but because I want to be that. I know that's not fair, that's not what the task was, but rules are made to be broken ... so I'm sticking with thoughtful. I want to be a caring person, one who notices and responds with care and kindness ... maybe if I say it here, I'll remember it there.

So, here it is, a challenge ... your five words? Just list them in comments or if you do a blog, post the address so we can all drop in.

Friday, August 29, 2008

Never Delay

I got the news via email. While I love the speed that information travels electronically, sometimes bare words, without the warmth of a human voice, are stark and cold. So when I read about the death of a man with a disability, all I could see were the strong, hard words printed black against a white background.

Feeling for me, and I suppose for all of us, is a complex thing. As a child there were the four basics; glad, sad, mad and scared. But as an adult, knowing how to feel sometimes takes figuring. Facts are not simple, they need to be seen in context, in interpretation. The fact of this man’s death, simply, alone, leads me to sadness and grief. But the context of his death makes knowing how to feel difficult.

He died of pneumonia, he died too young. Again, these facts lead me towards a tragic interpretation of the end of his life. But there are other facts. He was one of the people who moved from the institution to the community. He’s only been here a short while. Just saying that frightens me, I can just imagine people saying, “See, you shouldn’t have moved him.” There are people who have a vested interest in finding freedom too risky, liberty too costly and who take a stingy approach to justice. These people may use his death to justify a demand for continued captivity and servitude of people with intellectual disabilities.

But, I cannot see it that way.

You see, I once worked behind institution walls. And yes, there were wonderful staff who tried hard in difficult circumstances to make the institution home. But an institution is not home. An institution is an institution with long corridors, big wards, locked doors and closed minds. An institutions breeds captive, captor relationships even if not wanted, even if fought against. An institution is a jail for those convicted of the crime of difference. I know. I worked in two such places. I smelled the smell of captivity. I heard my footsteps echo in corridors as I walked by wards where people moaned and cried. So I cannot see it that way.

Yes he died.

But he died the way he was born. Free.

I remember reading his profile. The institutional reports painted a bleak picture. They presented a man for whom community was simply not a realistic option. His behaviours – extreme. His needs – extraordinary. He ventured seldomly, if ever, out of the institution because the risk was too great, his behaviours too severe, the safety of others were paramount.

Wading through the reports, reports of failure after failure, of ever increasing severity of programming, of descent into a kind of institutional madness – he will submit, he will change, he will BEHAVE. This was the man who was to move. This was a man we need fear.

But the decision was made. He would move. Every possible preparation was made. Training done. Plans in place. Emergency scenarios drafted and practiced. But he moved.

And moved well.

He adapted quickly, so speedily that it was hard to see it as adaption. It was like he’d waited for water and now he could finally swim. It was like he’d waited for air, and now he could finally fly. It was like he’d waited for freedom, and now he could finally just be a citizen. It was like he’d been waiting a very long time.

He did not get pneumonia because he was in the community. He got pneumonia because he got pneumonia. People like to make connections that don’t exist. On the morning he first sniffled, he wore pants. He did not sniffle because he wore pants. He sniffled because he was human and human beings get sniffles and sometimes sniffles turn into pneumonia. That’s what happens to human beings. That’s what happened to him. His illness is a huge testament to his belonging to the human race. Someone who was considered ‘other’ after all was simply ‘one of us’.

What matters here, and it truly matters, is that he was free. That in the last few months of his life he got to prove everyone wrong. He got to live up to his potential. He got to go to the mall. Alongside neighbours, alongside regular people. A tremendously simple thing made profound only because he did it. Successfully.

What that must have meant to him. Surrounded by the smells of the food court and the soft chatter of others. It was him, there, in the chair. Not locked away. Not out of sight. Not protected from himself.

What it meant to others became obvious. As news of his death spread through the neighbourhood, people came by to offer condolences. They didn’t know the man before, the man locked away. They only knew the man who became their neighbour. They did not fear him. They did not shy away from his difference. No, instead they came forward and said that they were saddened at his passing. He was to them simply a neighbour, a guy they saw living his life at home. Again, he exceeded expectation. Instead of being feared by the community, he was ultimately embraced by them.

He was free.

He was home.

He had arrived.

A few years ago a young child died and a father had difficulty with getting over and moving on. A friend said to him, “You keep mourning a life interrupted, you need to understand that your daughter lived a life completed.” That stayed with me, and it comforted me as I thought of him.

A life completed.

Amen to that.

Imagine though, that we’d waited. That the community took a few months longer to plan, to get ready. Imagine that we had waited until today. The day after his death. He would have died abandoned. Died forgotten. Died untested. It would have been too late.

Do not delay in doing the right thing.

Do not wait to provide restitution.

Because every day matters.


One of his final trips to the community was a big one. He went up the CN tower. One of the world’s tallest freestanding buildings. At the top of Toronto he could see the world. The world that was now his to explore. In the heavens there he was … free … standing.

And that’s how we will remember him.

Thursday, August 28, 2008

True Power

Something nice happened today. Something that took me out of myself and reminded me of the power of a simple act of kindness. I'm still feeling the glow of it now. I'm tired and should go to bed but I've decided to write this now, I want to see if I can capture this feeling in words.

When we moved we looked long and hard at the things we had, we were moving from a three bedroom house to a two bedroom apartment. From a full basement to a couple of closets. So things became an issue. What would we keep, what would we give away, what would we leave behind. Big questions. Often surprisingly emotional questions.

Anyone who has been to our home can tell you that we own a lot of artwork. All originals, all bought from the artists themselves. Some of the artists have gone on to great things, but most have not. But we didn't buy as investment, we bought what we liked. One of the paintings that we've had for years began to lose it's charm for me as my taste changed and matured and I wanted to talk to Joe about it. See what he thought. Did we want to keep this painting?

To help us make the decision I looked the artist's name up on Google and found, sadly, that he had just died. I immediately remembered him, a bright mind, an intense manner, a funny way with words. We didn't know him well, but still I felt sad to hear he had died. Then I found a blog written by his God Son, it was a wonderful tribute to the artist and I was moved by it.

We talked about it, Joe and I, and decided to email the young man and ask him if he'd like the painting. I knew that it would be weird for him to get an email out of the blue, but there was no harm in trying. Off went the email and back came a response within minutes. He was shocked at the offer, surprised that we wanted to just give it to him, but he accepted. Joe and I were busy for the next few weeks so we arranged to give him the picture today.

He emailed and asked, again, if we were sure that we wanted to part with the picture. If we were sure that we wanted to give it to him. I had re-read his post, his tribute to the artist, and was absolutely sure.

I've not been feeling really well these last couple of days, so when I got home from work today, I just got into my housecoat and Joe agreed to simply take the painting down to the lobby - where we'd agreed to pass it over to him. We hadn't invited him to the apartment because we felt that strangers shouldn't put people into that position. It seemed 'stalkerish' so we suggested the lobby of the apartment building. I think he was relieved.

He called a couple minutes before arriving and I explained to him that I had tranferred out of my wheelchair and was resting, that Joe would bring the painting down. He was taken a bit aback but said thankyou. Just before hanging up, his voice caught and he said again, 'Really, thank you, I will treasure this.'

Joe came up from downstairs and said that he'd been quite moved as the painting was taken with reverance and the artist's god son was really, really touched. Goodbyes were said, he grabbed Joe into a hug and then rushed out the door.

I felt powerful. Truly powerful. I sometimes forget, I think we all sometimes forget, that it is possible to do something simple, something nice, something powerful in someone else's life. For me, as a man who sits in a wheelchair, who needs help getting around ... I still have the power to make the day better for another. For me as a man who uses a reacher to pull my pants up in the morning, I still have the capacity to reach another person's heart.

While I am most certainly disabled.

The best part of me has not been crippled.

The painting is a watercolour, framed in beautiful wood, of a man sitting in a bar looking out of a window. I've often wondered what that man was looking at, what was beyond the pane of glass. Now I know.

Wednesday, August 27, 2008

Whoa Nelly!!!

Whoa Nelly!!

Whenever things were going awry, veering off course, my mother would holler 'Whoa Nelly!!' This is an expression I use seldomly. I'm pretty good at riding the waves of both mis and fortune and have learned, as all adults do, to deal with disappointments philosophically. So there have only been few occasions wherein I needed 'Whoa Nelly' in my vocabulary.

Such an event happened yesterday.

As most of you know, yesterday I did up a recipe to satisfy the request of a couple of readers. I decided to just try to funny it up and use a bit of diability humour (I'm told there is no such thing .. I differ). So I put in some lame jokes (see there is disability humour) to keep things rolling along (really, see?) and I was enjoying the writing of it.

Then in the comments someone took extreme umbrage that the recipe wasn't something that was an actual adapted recipe that could be made by someone who was an amalgam of every disability that could possibly exist. Well, OK, I don't really get it, but that doesn't mean the person is wrong, nor does it mean that they shouldn't express anger or disappointment if that's how they feel. I've had a lifetime of people telling me NOT to feel in particular ways .. I'm not doing that to someone else. So be mad, that's cool. Express anger, that's cool too.

But ...

And it's a big but ...

In that comment were these words: I'm not sure where to start with how terrible this is on a blog purporting to represent disabled people ...

All I can say is WHOA NELLY!! (Thanks Mommy.)

When did I ever say anything about representing disabled people? Only one person writes this blog (that would be me) and I write this blog from my experience and my experience only. I don't claim to speak for all disabled people. I don't even claim to understand every disability issue. I write from the point of view of a guy who is in a wheelchair and who works with those who have intellectual disabilities. That's it. That's all I do.

My opinions are just my opinions.

My words are just my words.

They are no more than that. I began this blog because I wanted to write a daily piece about my life as a disabled man. I wanted to find a new voice in alongside of the voice I'd used for years. I had little expectation of finding a readership. I had little expectation of writing for more than a year.

I write because I want to. I cannot imagine trying to write something that would speak sense to every single person with a disability. If I speak to one or two people with an individual blog, I'm doing ok.

So don't grant me power I don't have.

Don't gift me with power I don't want.

But most importantly ...

Don't expect of me what I can't give.

Tuesday, August 26, 2008

Tater Tot Casserole: By Special Request

A couple days ago I wrote about making a tater tot casserole and in the comments there were two requests for the recipe. I've thought about this and decided that it would be fun to do another recipe blog. Not to worry, I haven't lost the disability focus, for your benefit I've put 'how to cook whilst being a cripple' hints in the instructions for this dish. We are vegetarians, we used faux groud beef in this recipe and it worked just fine. We are also cooks so we adapt every recipe we try. So here's our adapted recipe along with helpful handicapped hints.


1 chopped onion

1 chopped green pepper

1 cup frozen peas

2 pounds ground beef

2 cans cream of celery soup (most recipes call for cream of mushroom but Joe hates mushrooms, I love mushroom soup - but life together is compromise, compromise, compromise ... oh, yeah ... um ... onwards)

1 soup can of milk

1 bag frozen tater tots

1 and a half cup shredded cheddar cheese

Making the Casserole

1) make room in the kitchen for the wheelchair

2) organize work into walkie work and sittie work

3) if you don't say it people won't get it, assign walkie work to the walkie and sittie work to the sittee

4) chop up onion and green pepper and put them in a bowl ... sittee work ... make sure that cripple isn't in a black mood. We know that cripples can be murdering scum ... must be, I've seen their bitter twisted faces on the telly.

5) fry up the ground beef and dump in the bowl of peppers and onion, continue frying until beef is browned off like it's been denied access to a shop because of stairs and the onions and peppers look as wilted as if they'd just been through an interview with a social worker who couldn't spell ... benefits.

6) frying is best done by walkie unless sittie can also standie ... but in this house hold walkie does the frying sittie does the sitting, the closest this sittie comes to frying is, on occasion, stewing.

7) into a bowl empty the contents of the cans of soup and mix with the can of milk - make a joke about how the milk of human kindness should come in little containers so that you can force feed it to those unthinking bastards who grab your chair without permission.

8) walkie, now's the time to take the knife away

9) when the meat is fried and the onions and peppers are done, mix the soup into the meat and add the frozen peas - add salt and pepper.

10) I know that salt and pepper weren't on the ingredient list. No one who cooks needs salt and pepper an ingredient list, if you don't have salt and pepper in your house, you probably fry water.

11) Pour the meat mixture into a big pan ... I don't know sizes ... I'm a man, a gay man ... you'd trust me with inches ...?

12) Put tater tots all over top, don't just throw them on, take pride in your work ... food is art ... look at the picture if you need a guide.

13) Cook at 350 for 45 minutes then sprinkle on grated cheeze and set under broiler.

Wheel out of kitchen and watch television until dinner is ready. Just before eating, surreptitiously check outside to ensure that no nutritionist is anywhere in the area. You can recognize nutritionists on sight, they are typically wan, angry people who delight in nothing. As that wonderful combination of potato and cheese and meat enters your mouth ... remember, who the hell cares that you're in a chair when life tastes like this.


OK, the first two comments today asked what tater tots were ... maybe these aren't as universal as I thought they were, I've taken a photo of the bag of tater tots. I'm sure they exist in some form in every country that wants to control it's populace through food. If you need more information, like what they are called in various countries visit tater tots.

Monday, August 25, 2008

12 doors.

OK, there is something that really pisses me off. It's going to be that kind of blog today. A rant for the sole purpose of getting it out, getting it said in an attempt at getting it out of my head.

It happened yesterday. It has happened a lot, but when it happened yesterday it stuck in my craw. (I don't know what a craw is, I don't know why things stick there, but in this case, I know for certain, it was, indeed, stuck in my craw.)

We went to the movies yesterday. The theatre we went to is one of those huge ones built on acres and acres of land. It plays somewhere near 617 films at a time. It's hallways are long vast corridors. We parked in the disabled parking area and even from there it was a long walk to the front door. The disabled door, the one that opens when you push the button with the wheelchair symbol was at the furthest point from the disabled bays. You have to walk by, 11 other doors to get to that door.

No matter we are used to design that seems to follow no design. Anyways, we get to the door and Joe pushes the button and the door slowly, slowly opens. I'm holding hard onto my wheels because I'm on a slope and to let go is to roll backwards. Once the twelfh door opens, Joe is back behind me and we attempt to get over the metal bump on the bottow. It requries some work. All this is made more frantic by a guy who lines up behind us to go through the door.

Behind us.

Not just behind us, but behind us and impatient.

Not just impatient, but rolling his eyes and looking at this watch impatient.

Not just looking at this watch but making little impatient noises to let us know he is here and we are in the way.

Understand there are 11 other doors. No line up at eleven other doors. He could step only one foot to the side and go into the door beside us. But no, he wants to make some kind of comment about us taking time getting through this frigging door. Joe and I manage to get over that sill and are headed to the door in front. It too has a button, Joe pushes it. I'm sweating now while the door slowly opens. He's still behind us, he's still acting like we are going to make him late for the movie. Words form in my mind, spill out of my ears, but no way am I going to engage him, talk to him. Screw him. There are 11 other doors. He's doing this on purpose. I'm not going to say anything. We get through the door, he gets in behind us and then rushes past, like he's got a very important appointment.

I hate feeling like I'm in the way, an obstacle in other's path. I hate being the easy victim of my own insecurities. I hate how strangers being assholes can affect my spirit ... my enjoyment of an event.

Then there he was, walking beside a woman, "Anyone ever tell you that you are a jerk?" she said, I don't know about what.

"No but I thought it," I muttered outside her hearing.

And felt immediately better.

Sunday, August 24, 2008

In Memory

It always takes me by surprise, being recognized. I know that with every audience I speak to, the chances increase that some time in the future one of those people and I will run into each other. But still, it surprises me when it happens.

I was sitting looking at veggie deli slices trying to pick out which one I wanted for sandwiches. A routine, comforting, thing to do. A woman approached me, I only noticed her because she'd been glancing at me as I made my way through the store. I'm not naturally paranoid, so I didn't think she was following me. She was. I'd make an easy victim.

"Are you Dave Hingsburger," she asks. I find this a funny question. At my weight and as a guy lumbering around in a wheelchair, there are few other people I could be. As this was running through my mind, I said, "Yes."

"I heard you speak in Vancouver and the World Down Syndrome Congress," she began. I immediately remembered the experience. I was terrified. I'm a nervous speaker to begin with but this was a huge lecture. There were people from around the world. I was on an enormous stage. There were two speakers before me, I had to wait my turn - my anxiety growing by the second. If I were to fail, this was a spectacular place to fail. I remember looking out over the audience, it was dark in the room and bright on the stage so I saw little. I could see the translation booths at the back of the room. My heart went to my throat ... and I began.

"That was an amazing experience," I said. She looked at me and nodded indicating that it had been an amazing experience for her as well. "I remember the whole thing vividly," I continued as she seemed a bit lost for words, "it was an honour to speak in front of so many parents, the love that you all have for your children could actually be felt up on stage."

Her eyes teared up and I asked her if she was OK.

"My little girl just ..." now she was openly crying and I knew the rest of what she was going to say. This was tragedy and loss, that was all. I never know what to say in these circumstances, there are no words in the English language that adequately deal with grief. There are no words that convey comfort well enough. None. I said, simply, "I'm sorry."

"May I tell you a bit about her?" she said. I said, "Of course."

"No one wants me to talk about her, I'm supposed to forget her. Move on. Even my husband ..." her voice trailed off. I simply waited. Joe came round the corner, I could see on his face that he had been wondering why I was taking so long deciding over faux luncheon meat. He saw her, noticed her tears, saw that we were talking and simple backed a way with a nod of his head.

Then she talked, she described to me a wonderful little girl. A little girl who faced health issues from the beginning, who managed to find every spot of joy that she could, a girl not fazed by the medical appointments, a child who could comfort her mother when her mother should have been comforting her. A child deeply and sadly missed. "At first, I didn't even know if I wanted her, now I'm finding it difficult living without her."

This is the transformation, of course, what begins as a cold clinical diagnosis ends up being a warm loving child. Children with disabilities have the amazing capacity for morphing from 'other' into 'mine' ... they are shape shifters with the ability to fit into the crevaces of a broken heart making it whole again. I've seen it over and over again.

But this woman's heart was broken anew. Her child has died. Without knowing the child I am still mourning her loss. "She loved me, she loved her dad, and we loved her. It all turned out to be so simple. We thought it would be more complex, more, I don't know, difficult I guess."

We talked for awhile longer, we laughed at stories about impish behaviour and little jokes. She was no longer crying. "It felt good to tell someone about her. My friends didn't want to talk about her when she was borne, no one wants to talk about her now she's died. I just don't want her forgotten."

I asked if I could write about our meeting on my blog the next day. She smiled and said, "Of course, as long as you mention her name."

I said I would.

Last night before bed, I prayed. Asking God to make sure that a little girl knows that her mother loves her, that her parents miss her. I believe the message got through.

I believe that Amanda knows, full well, that she was, and continues to be, deeply loved.

Saturday, August 23, 2008

Dave's Being Lazy

I peeked out at the world and discovered it was Saturday.

I've decided not to write a blog today.

In fact, I've decided to just lie in. Read a book. Maybe catch a flick. Bake a tater tot casserole for supper.

Writing a blog just didn't make it on my list.

See, nothing happened that I want to write about. If I did write about one of the things, I'd be nasty. If I wrote about another, I'd be catty. If I wrote about yet another, I'd be inappropriate.

I don't want to be any of those things.

So, I'm not going to write a blog today.

I think I might just watch a bit of telly. Brew a pot of green tea. Make a sugar free cake.

It ain't easy having something to say every day. Straining through the day waiting for a blog to happen. Storing away stories for a dry day like today. Having a day come to a close without inspiration for the morning causes a bit of panic.

But why? I ask.

I can simply say: I'm not going to write a blog today.

It's my right.

It's my choice.

It's totally up to me.

So Chewing the Fat is closed for the day. Not the season. Not even tomorrow. But just for today.

Gone Fishing!

No wait, I'm vegetarian.

Gone Apple Picking.

Now I just need an accessible tree.

Friday, August 22, 2008

My Little Gift

It's weird living in an apartment building again. It's a big building with over twenty floors. There are more people living in that building than lived in Baxter, the small town we moved from. What's weird though, is that you never really see anyone. We've met the neighbour across the hall, Tess, but only because she purposely introduced herself. We've not even seen anyone on our side of the elevator. So the other morning when we were getting on the lift and heard a fellow from the other side come out of his apartment, we held the door waiting for him.

A trim, faintly handsome man, got on the elevator. We said 'Good morning,' he didn't. Well, that's OK, not everyone is a morning person. Joe goes down to get the car and I get off in the lobby and head out to meet him. This means I rely on someone to open the lobby door and then the front door. I pushed out of the elevator and our neighbour rushed by. I asked him if he could hold the door for me. He bristled. Actually bristled. But he held the door.

I went through and said 'Thankyou' ... then he rushed through the front door without holding it and without a look back. OK then. Someone else came along and held the door and I was out and rolling down to the street to meet Joe. As I rolled I tried to process his attitude, his reaction to me. He was icy cold. He was hostile. He was definately unfriendly. Was I being paranoid or was he truly hateful.

Two mornings later, we were back at the elevator, again we held the door when he came out of his apartment. Joe waited for him and then we heard the faint click of the door at the end of the hallway. He'd taken the stairs.


I've seen him a few times since. He won't look me in the eye. He's a physical fitness buff and can be seen coming in after a jog or going out on roller blades. I'm not sure if it's my weight or my disability but something about me disgusts him.

Well, at least it's a reciprocal relationship.

Because something about him certainly disgusts me.

But I wonder to myself, what does it profit him - this belief in his superiority, this idea that he is worthy and others are not, this notion that worth is seen not discovered. What does it profit him to live his life in such a manner that he can willingly and purposefully exclude others? I have noticed that others, even nice looking regular people avoid his gaze and step out of his way.

What does he get from this?

Well right now he gets this ...

Thursday, August 21, 2008

Twist and Shout

Ow Ow Ow Ow

I can't believe how much it hurt. I managed to twist my knee when standing up to transfer from the couch to my wheelchair. I've done that move a thousand times but I must have done something just slightly different. I didn't feel much more than a twinge, at first. But an hour later and the knee was throbbing.

Getting up at night for a pee is a given, I'm over 50, and when I stood my knee protested loudly. I could barely move. I stumbled from one brace to another as I held on first to the top of the dresser, then to the door jam, then to the hallway wall. It was almost unbearable.

I knew that Joe had some anti-inflamitories, from when he had the heel spur, left over. There were the T3's that I'd not finished when I had surgery. Somewhere in the apartment was relief. I made it to my desk, sat down on my office chair and waited for the pain to subside. An hour later Joe got up to check on me, he found the pills in a few minutes and I was trembling like a crack whore as he doled them out to me.

Being stoned was simply a side benefit to the pills, mostly the end result was that the pain went away. The next morning we modified our goals as I couldn't really walk at all. I'm not much of a walker now anyways, but what I had was now almost gone. Without the pills, I could stand, briefly, and hobble the few feet from the bedroom door to the bed.

Talk about feeling foolish. Double crippled. I deserve 2 parking spaces!

It was interesting to realize how much I depend on the movement that I do have. That when it was gone the world I navagate well became suddenly much more difficult. That the independance I have was suddenly completely gone.

I know my knee will get better, I know that all will be well. I know that I will be well. But it was a harrowing glimpse at how hard the world could be - and how much I take my world for granted.

But, my world is my world, and however I experience it - vanilla will still taste like vanilla.

Wednesday, August 20, 2008

Just Being Needy

I popped by Shannon's blog today and she had played an interesting game on her computer. She'd typed 'Shannon needs' into Google and then published some results. I was having a quiet few moments so I decided to do the same. I googled 'Dave needs' and the list was interesting ... here's the first ten.

Dave needs a shave.

Dave needs a shower.

Dave needs a rest.

Dave needs a timeout.

Dave needs servers.

Dave needs a lover.

Dave needs rehab.

Dave needs therapy.

Dave needs a big apology.

and the last one, quite simply states:

Dave needs help.

Not being entirely egocentric, I thought I'd look up Joe Needs and see what was there. I thought maybe it would be a duplicate list. Don't we all need the same things. Turns out that ..

Joe needs a liver transplant.

Joe needs to do his part in holding up the pecking order.

Joe needs to poop.

Joe needs our help.

Joe needs a drummer.

Joe needs you.

Joe needs to keep quiet.

Joe needs a leather bound day planner.

Joe needs expert advice.

And of course ... and I couldn't agree more ...

Joe needs toilet training.

Well, wasn't that a fun way to spend a few minutes. I was just jotting notes about what I was going to write about when I read Shannon's blog (I've put that link in twice because I'm totally impressed that I can do it now and am showing off.) It was fun to write something totally without sense or meaning. After the week we've had with Tropic Thunder, I think we all need a bit of a breather.

Speaking of Tropic Thunder, I think the best analysis of the movie and the boycott was written by Dick Sobsey on his blog ICAD which is definately worth a read. Rah, Dick.

So a challenge to regular commentors. Give me the funniest line that comes up from your NEEDS search. The funniest one will get a copy of 'the R word ... helping people with intellectual disabilities deal with teasing and bullying' (check the book out at Diverse City). I'm not sure if the book is on their website yet, but if it isn't now, it will be in a day or two.

Tuesday, August 19, 2008

Lesson From a 14 Year Old

So, I learned a few things about a wheelchair from hanging around with a 14 year old boy and his dad. The primary lesson is that a wheelchair is fun. That's right, fun. It ain't a tragedy. It ain't a cause for pity. Instead it's cause for mischief, play and feats of strength. To me it's simply a means of transportation. But I was wrong. It's much more than that.

It started while shopping in Zellers for soy milk. I kid you not. I was pushing myself and finding the work of pushing was very, very difficult. I didn't really notice because I've been wanting to get the chair tuned up for awhile now and I was thinking that it really needs that tune up. Then when the resistance was incredible I heard a giggle behind me. I glanced back and just caught a glimpse of Joseph's hand as it left the hand grip. I spun round and accused him of holding my chair back. Yep. It's fun a wheelchair.

Later, I felt the same kind of resistance but this time Joseph was beside me. Then Joe gave me a little nod to look down and I saw that Joseph was using his sneaker to grind the wheel to a halt. Yep. A wheelchair is a laugh riot.

At the museum Joseph offered to push my chair for awhile to give me a break. He's a strong kid, stronger than he looks, but I still was a little embarrassed ... I mean a little kid pushing a huge man so I pushed along to assist him. He insisted that I not push but just put my hands in. I should have guessed. Then we took off. I have never gone that fast in the chair, even going downhill. He ran as hard as he could and then took a turn. I swear we burned rubber. Yep. A wheelchair is a video game come to life.

I think that all this disability stuff has affected Joseph at least a little bit. He knew about why Tropic Thunder was being boycotted and talked about it right after getting in the car. Hell, I know people in the disability community who are clueless about the boycott. He is completely relaxed about the wheelchair and very aware of things like ramps, aisle widths ... he even came out of a bathroom and said, "You gotta check out the bathroom, it's got the best wheelchair stall I've ever seen in my life."

I hesitated to point out to him that his life ... is a bare 14 years, but I didn't. Even so, I figured that I was teaching him a lesson about how disability doesn't mean a loss of personhood or a loss of personality.

But he taught me something better.

A wheelchair is a very, very cool toy.

Monday, August 18, 2008

Not Yet

On our last full day of our mini-vacation, we decided to take Mike and his son Joseph to the war museum here in Ottawa. We'd been there a few months before but only got about half way through. We thought it would be good for Joseph to see the museum - it's kid friendly, beautifully laid out and fascinating. Joe and I went to get the tickets and on buying them saw a poster for a special exhibit called, 'Deadly Medicine: Creating the master race" that has been borrowed from the United States Holocaust Memorial Museum.

Needless to say I wanted to go. The special exhibit hall is right after entry so we all trooped in. Right away there were Nazi posters about the use of eugenics to cleanse the imperfect and unwanted from the population. There were chilling pictures of people with varying disabilities in hospitals and institutions where their doctors and caretakers conspired against them, their value and their lives. Those who knew better did what was worst.

I felt sickened.

Joseph looked confused, so I asked him what he knew about the Second World War. He knew, of course, about the Jewish Holocaust, but had no idea that others came first, others were used to test the machinery that would kill millions more. As I spoke to Joseph, I noticed other visitors to the exhibit hanging around as I explained the process to him. Told him about Hadamar in Germany. Told him about the destruction of people with disabilities. I know this stuff, I wanted him to know too.

Later, Joseph had wandered off and I said to Joe, "How many people will go through here and shake their head at what the Nazi's did and still think that it's ok to weed disability out in the womb." A woman glanced hard at me. I continued with Joe, "Like the weeding of Down Syndrome out of the gene pool." Her face grew almost rigid.

She brushed by me, bumping my chair hard. "It's not the same. It ISN'T," she said. Then she was gone. I calmed myself down. I think it is the same. Eugenics is eugenics. Elimination of a minority is the elmination of a minority.

I brushed all of this away, determined that Joseph would have a good time, that the visit would not be tainted with my needs. At one point we were under a recreation of a huge bomb crashing through a ceiling. We all looked up at it. It is quite frightening. Joseph said a few minutes later, "I could go a burger now." We knew he'd had enough of war and wanted to get back to the business of being a kid without care. I felt the same. I just wanted to get out of there.

We've decided to come back in a couple of months to see the exhibit alone. To take real time and go through the whole thing panel by panel.

And there is something I want to do.

There is a picture of a group of people with disabilities. One of the people in the picture has Down Syndrome. I'm afraid she might have heard the woman's voice, echoing down through time, through history. So I want to go back and say two things.

"It is the same."

"We've not lost yet. Not yet."

Sunday, August 17, 2008

On Holidays.

We saw a guy eat razor blades.

We saw another guy hammer a nail into his face.

Oh, and the woman who did splits on a rope strung between poles.

And the other woman who hung on a ring balanced on her neck.

We went to an old fashioned Carnivalle.

And saw someone eat fire.

And saw someone sit on an operating electric chair.

And saw someone catapult through the air.

We went to the fair.

Where someone swallowed a sword.

And someone else drank a cup of boiling water.

And then someone bent a steel bar with his teeth.

Yep we went to Carnivalle Lune Bleue ...

Where the people who were different.

Were the coolest people in the room.

I'd pay to see that.

Oh yeah.

I did.

(picture is of Levi the Strong Man and Joseph the Mighty Kid)

Saturday, August 16, 2008


We arrived in Montreal to find that it is Gay Pride weekend here. We didn't realize that when we booked the holiday but were pleased to be here for the action. After going to a movie and having lunch we were going to go for an afternoon beer at one of the bars on St. Catherine street. We were quite lucky to find parking just off the pedestrian mall that had been created for the celebrations.

There were several small booths that had been set up on the mall all staffed by young and enthusiastic volunteers. It appeared that the booths had been grouped into various areas and we entered into the health and well being area (if I'm translating correctly) and there were several booths with AIDS information, one of which had several large plastic penises on display. (I've always thought that the plural of penis should be peni - it feels better in the mouth.)

Anyways, as we were leaving to go to the pub a young fellow approached me (ME!!) and handed me a small packet that included both lube and a condom. (ME!!) I looked at him in surprise bordering on shock (ME!!) and said 'Thankyou' then switched immediately to 'Merci' when I remembered where I was. (ME!!) Then we found a shaded patio and struggled up onto it and ordered a beer.

As we waited for the beer to arrive I reminded Joe about two incidents. The first happened many years ago just after the AIDS crisis had hit. We were in San Francisco for Gay Pride with another couple. They were both beauties. During the march they were both handed hundreds of condoms by various people from various groups. Joe didn't do badly in the condom department either. However, me (ME!!), my fat old self, I wasn't handed one. Not one. We were swarmed by condom hander outers but they didn't waste a condom on big ol' me. A year or so later I was in Vancouver, on my own, giving a series of lectures.

On the weekend I went to the bar for a beer and was there when the bar was swarmed by the AIDS network groups and condoms were handed out. Buckets of them. To everyone but me. Fat ol' me didn't register on their radar. (ME!!) Couldn't be seen. Couldn't need a condom. Excluded from the possibility of sexuality because I'm just not, um, pretty. All that really angered me then. Partly because I was waging a battle to ensure that condom training was done for people with disabilities. I felt a kinship because they too had been exerpted from consideration as sexual beings. That kind of prejudice stems from the idea that people who look in particular ways are not as sexual or as human as others. So it angered me.

But here, on a sunny day I'm sitting on a patio with a drink in front of me and a condom packet in my hand.

(ME!!) finally.

Friday, August 15, 2008


Hotel rooms often have mirrors in the oddest of places. At home we have a mirror in the bathroom and one in the hallway by the door. Gotta see to brush your teeth, gotta check to see that beauty is blazing before heading outdoors. I check the mirror maybe, maybe, twice a day on work days, not at all on weekends.

We are in Montreal at a hotel on the start of a 5 day mini-vacation. We arrived later than we thought we would - construction increased our travel time by hours. I was tired after a busy day and decided to stay in while Joe headed out to have a beer in a local bar. I checked emails, answered all the work ones, wrote a couple personal ones, checked the stats on the blog, read the comments ... and that was it. I got up out of my wheelchair to go to bed and my housecoat flapped open. There imbedded in cellulite was an imprint, on either side of my body, of the wheelchair arms. I looked at it fascinated. You could see the armrests, the metal curves of the side and the space under the armrest before the protective cover. Wow.

Since I was alone in the room, I shrugged off the housecoat and twirled around looking at the various places on my body that were imprinted with chair. I thought it funny. I heard Joe's key in the door so I quickly put the housecoat back on and sat on the side of the bed giggling.

Later I thought about the imprint the wheelchair has had on my life. It hasn't left a mark on my career or my relationship with Joe ... it has barely made a mark on my friendships or my collegial relationships. It hasn't made the difference I thought it would.

What has been imprinted, very much so, has been my understanding of the social world. There is both incredible generosity and incredible hostility directed at me because of the chair. In equal meassure. Little acts of kindness by strangers, kindness unecumbered by pity, leave me often touched to the point of tears. But little acts of barbarism can leave me breathless with fear and anxiety.

I had begun doing the teasing and bullying workshop for people with intellectual disabilities a year before becoming disabled myself. I loved doing the workshop and was impressed at discovering a steel backbone in many with intellectual disabilities. I heard stories that would curl your toes but I also heard of the incredible determination to make community home. To not give up lost ground. I stood in awe of those who faced daily slurs and continued on, understanding beyond expectations that they were making a difference. I also stood feeling helpless when those less strong wanted to shrivel and die in the face of the routine and casual bigotry of strangers.

All that mattered to me then.

But as my life was imprinted with the wheelchair. As I began to experience that kind of daily prejudice, that routine ignorance, that predictable bias, it more than mattered to me - it empowered me. It gave me fuel. I began to feel a flame burning inside me that wasn't there before.

One of the comments recently, from an angered parent, referred to me as a professional who is thousands of miles away from the front line. That comment rankled me because it's never been true. I've been directly teaching, directly supporting people with disabilities my entire career. My caring doesn't stop at the end of the stay and start up with pay the next day. But, I do admit, that a day in the chair out in the community taught me more than thousands of hours of work, thousands of hours in classrooms and lecturehalls.

It taught me the truth of the community.

It takes guts to go out the door. It takes courage to enter the world. Because every day there will be hurt, every day there will be stares, comments, social violence. Every day takes a renewed spirit and a sense that it matters what I do, it matters where I go, it matters the respect I demand.

It matters so I do it.

It matters so you do it.

Because our lives have been imprinted with disability.

Therefore our lives have been gifted with purpose.

Thursday, August 14, 2008

Update Tropic Thunder Openning

I just did a search to see how Tropic Thunder did at the box office. It opened quite a bit lower than expected. Check this out deadline hollywood daily. We'll have to wait and see but maybe, just maybe, more people listened to us than we expected. Or maybe there are more of us than we can imagine.



I got up this morning just after midnight to go for a pee. I knew I shouldn't but I popped on the blog for a few seconds to see what was going on with comments. I discovered that my blog had been discovered by the world outside the disability community. I had had over 100 hits in an hour and there were just over 70 people on my blog at that moment. Somehow my blog had gotten listed somewhere and all these visitors were storming the gates.

Sometimes it feels like 'preaching to the choir' when writing a blog so I was pleased that some of those who are more likely to use the word 'retard' and more likely to see 'Tropic Thunder' were reading the blog. I could see from the stats that the specific blog being visited was my letter to Ben Stiller. Cool. Then just before going back to bed I wondered if these new visitors were leaving any comments.

Oh my.

A few had ... all negative. But one was so outrageous in what it said that it bears being reprinted here. Remember, I did warn you about strong language:

You're a fucking cunt. Grow some fucking balls you spineless faggot. You're out of touch. Someone makes a joke that mocks the handicapped and you write him a fucking letter holding him responsible? He doesn't give a fuck. And he rightfully shouldn't. You're the reason there are school-shootings. Pussy fucks like you raising your children to be passive snot-nosed shitlickers that will eventually snap and then pull a gun on their classmates because losers like you never taught them that sometimes they just have to ignore stupid people.

Fuck you, and fuck everything you stand for

Now here I am sitting safely in my apartment feeling, not upset or anger, but fear. I don't know who this person is (while I have the courage of having a name, my attacker has the cowardice of the anonymous - who's spineless here?) or what they might be capable of. This is the kind of person that exists in the world, this is the kind of reaction that confrontation can occasion. Wow.

I'm glad that my post made this writer angry. I'm glad their true hostility came out. This allows us all to sit up and take notice about the world as it actually is and prejudice as it actually happens. This person is reacting harshly to what? My letter to Ben Stiller? I don't think so. I think this person is reacting to the challenge that their use of a hateful word is evidence of a hateful spirit. Their denial, or rather, their form of denial gives truth to that sentiment.

The job is a big one. I don't care about convincing this writer about the rightness of our cause. I don't care if they ever believe that name calling is wildly inappropriate ... their use of the word faggot, tells me that this is a hollow dream. What I care about is that we realize that we must work hard, harder, hardest to ensure that those in our care, professionally or personally, are prepared well for the world.

Because the world has this writer in it.

A sad fact.

But a fact.

Wednesday, August 13, 2008


So Tropic Thunder opens today. It is unchanged, the R word will be rampantly used, the phrase 'don't go full retard' will enter popular lexicon. So we lost right?


I dizzy with excitement at our success. For a long time I have moaned about the lack of courage and the lack of leadership in the world of intellectual disability. Our collective fear of anger seemed like folly to me. Why minority hasn't allowed anger to motivate social change? We all just seemed so damned polite.

Somethings happened to us. A coalition of 22 groups worked together in protest. Along with them were the voices of disability bloggers across the blogosphere. Along with them were the voices of families, of care providers, of agency staff. Along with them all, most importantly, were the voices of self advocates speaking up and being heard. It seemed like we all glanced at one another and said, "Enough".

And we discovered power.

Real power.

The outcome of a war is not determined by the battle but by the spirit in which the fight was waged. Look at what happened. Dreamworks blinked. The Simple Jack website was pulled. The trailors were changed. The 'Don't Go Full Retard' clip was removed from You Tube. The tee shirt was taken off the market. Our protests were heard all over the media. Ben Stiller had to address the controversy and found himself explaining his 'humour'. Our voices were heard, in unison, around the world.

My boss is on holiday up in hinterland Ontario, she sent me an email that the local radio station, The Moose, actually editorialized against the movie suggesting it is not appropriate for teens and advising parents of the hateful language. Everywhere I have gone this week, people were talking about the issue. Not just the movie, the issue of hate speech regarding disability. Well my oh my.

I just hope and pray that now that we have discovered each other, that we have seen that united we can be a powerful voice, that we do not slide back into obscurity and petty wrangling. I hope that we unite again and again. That what started as a coalition becomes a movement.

There is much we can acheive together.


Shoulder to shoulder.


Tuesday, August 12, 2008


To be sure I have been disturbed by what I have read about the stereotypical representation of people with disabilities in Tropic Thunder. I have written against it but not been surprised by it. The ignorance about the people who have intellectual disabilities is often greater than the ignorance attributed to them. So, while I protest, I do not do so with shock.

What disturbs me, almost more, is the stereotypical representations of people with intellectual disabilities that I read in blog posts and comments from people purporting to disagree with the Stiller stereotype.

In many presentations I have read descriptions of people with disabilities as ...



cannot defend themselves.

Really? This does not describe the vast majority of people with intellectual disabilities that I know. To be sure this is a minority with vast differences within it, like all minorities their differences from one another is often as great as their difference from the norm. Even so, to suggest that people with intellectual disabilities are solely dependant upon others for their protection is what has led to their constant victimization. The image of the 'helpless' has led to the creation of the 'helpless.'

Indeed, I have seen incredible ablility to speak up, speak out, speak sense in many self advocate groups. In my own agency, just days ago, a self advocate walked into the Executive Directors office with a complaint - he expected to be heard, he expected his words to bring change. He did not do this with help. He did not do this with the encouragement of others. He did this on his own. A powerful man, a confident voice, all wrapped in the personhood of someone with an intellectual disability.

In many of the comments I get the sense that people should be guilted by pity into abandoning the use of the word 'retard'. I do not want this. I do not wish this. And if we win with this arguement we will lose so much else. I demand the retraction of the word retard not our of pity for a lesser but out of respect for an equal. People with disabilities can equally feel social pain, therefore social pain inflicted upon them is equal to the social pain inflicted on anyone else. Stop it because it is wrong to purposely hurt others ... that is the only reason.

Parents, if your child is as helpless or as vulnerable as many state - then this is more often a failure of parenting than it is a characteristic of disability. It is the duty of all parents to teach their children self reliance in the face of bigotry and bullying. It is the duty of parents to teach their children how to manage in the real world, not a world of pity and compassionate tolerance. Teach your children about bullys and bullying. Teach your children to value themselves as people with disabilities. Teach your children about diversity and their role in the world. Teach them to withstand the slings and arrows of walking down hallways and sidewalks. That's the job of parents.

Yes we fight bigotry and intolerance. We do this with protests. We do this with placards. With do this with letters to the editor. We also fight bigotry by instilling pride into the backbones of people with disabilities. Every minority has won rights only after it came to recognize the inherant value of difference. Gay Pride. Black is Beautiful. Out of the kitchens and into the cabinet.

So decry any form of stereotypical representation of people with disabilities. That done by others. That done by ourselves.


Monday, August 11, 2008

Update: Free Cards

Further Update

Please visit activegrey matter they are going to print 10,000 of the "Words Hit" cards and are willing to give them out to people wanting them.

I can't tell you how impressed I am with this gesture!

10,000 cheers!

Words Hit Cards

I have a downloadable file for the cards, artwork and all, but do not know how to put this on the blog. Anyone wanting a copy, please email me directly ... and I'll send it out to you right away.

Two things:

First, I want to thank Vita and our ED Manuela, for allowing these to be simply given away. I love the spirit of cooperation that this implies, I love it when we all work together, I love practicing community rather than simply talking it.

Second, if as a result of the use of these cards something happens that makes a cool story, could you let me know? I'd love to share some stories with others on the blog.

Sorry about not being able to put it directly onto the blog, the computer is still a magic box to me ...

But it's not to Sue Cline who has just put these links up for everyone ... I love the Chewing the Fat community ... I really do ... thanks Sue.

For the Birds

I got a look today that I did not recognize. A total stranger stopped and stared at me. Openly stared. But there was a look on his face that I didn't quite recognize. I don't think he realized that he was staring, didn't even flinch when I glanced up and caught his eye. Didn't look away. Just stared.

We had parked at my new favourite spot on Yonge Street, there is a coffee shop with a patio on the street. We headed there for a cuppa and when we arrive we found that there were no tables out. It was not raining but they were anticipating a storm. Joe went in and got us each a tea, as a surprise he picked me up a Rice Krispie square. Joe sat on the stairs beside me. I'm not really allowed to eat too much sugar so I ate a bit but picked it apart and began to feed the birds.

On my first toss there were only a couple of pigeons and a few small brown birds. A couple tosses later there were hundreds of birds surrounding us. These were city birds, man, they had no fear of people at all. One flew up and landed on my knee, another kept trying to draw attention to himself by flying up just inches from my face. I could feel the strength of his wings in the breeze as he hovered in front of me.

I became obvilious to everything but the birds, oddly, a few became my favourites and I would toss specifically in their direction. Then I felt the gaze, that feeling you get when you know you are being watched. I looked up and saw him standing there. Stopped as if in mid stride and he was intensely looking over at me. I didn't feel a sense of embarrassment or discomfort as I usually do in these circumstances because there was no hostility or even curiosity in his eyes, his face showed something else. Something I couldn't identify.

At first.

Then I remembered my University years in Victoria. I used to escape from the campus and go downtown to the cathedral. There was always a woman there, elderly, with one of those walkers that you could sit on. She had a bag full of old bread slices and she'd sit and toss the bread to the birds around her. She coo'd to them, talk to them, and by God if they didn't coo and talk back. I remember seeing her for the first time.

She sat there in deep communion with the birds. Tossing bits of bread first here, then there. The birds flapped around her, scurrying after the bits of bread. She seemed so incredibly in the moment, so incredibly peaceful, and in a way, incredibly rich. I remember her looking up at me, where I stood transfixed.

With envy on my face.

Sunday, August 10, 2008


I got a wonderful email this week. I was given a little gift, one I hadn't asked for, one I didn't even know that I wanted. But it was a gift that gave me some real pleasure.

It a comes from something that happened last year. I had been given the privilege of speaking at the A.C.E. (Advocates for Community Education) conference hosted by Community Living Campbellford/Brighton. This is a conference for people with intellectual disabilities and they came from all over the province. It was a wonderful gathering with real spirit.

There was something akin to celebration in the room. It was infectious. During the break I spoke quickly with Joe. We discussed not taking a fee for the day. We can't do this often, I do need to make a living, but I really felt that I wanted in some real way to support this conference, this opportunity for people with disabilities to gather in some strength to feel their own strength as a community. Knowing that so many people with disabilities simply don't have the financial means to attend conferences or pay for travel, I wondered if my fee could be put aside until next year and be used to assist those who wanted to attend but couldn't. It took no convincing, Joe was on board.

We told the conference committee when they were handing me the cheque, that we were giving the money back. They were a little stunned by the offer but they agreed that they would find a way to make the money available to self advocates the next year. We left it at that. When Joe and I left we felt good about the experience and we talked about how important it was for people with intellectual disabilities to get together and learn the skills necessary for living in the community. Facing down bigotry and prejudice is a skill that those in visible minorities simply have to learn. The community, as we have seen this week, can be a hard, hard place.

As it happens, life came along and soon the experiences at the conference became a dim memory. So when I received an email with the tag line 'Bursary' I had no idea what it was about. I openned it and discovered that the A.C.E. committee had taken the money and created the 'Dave and Joe Bursary' that self advocates could apply for to assist with the conference fee.

I was really touched. I had not asked them to do this. Was thrilled that they did. But what really pleased me was that they, without asking, knew to include Joe's name when naming the bursary. The decision was as much his as mine. The fee was as much his as mine. Though I am at the forefront of these lectures, Joe is definately the man who puts it all together. Further, for the self advocate lectures Joe teaches with me. I can't do that lecture alone. We have signals that only he understands and he knows the programme and his role step by step. So to see the ... 'and Joe' made me really pleased.

This September people with disabilties from Ontario will be gathering together, some of them there because of a busary created by A.C.E. with money donated by us. This idea gives me incredible pleasure.

Woo Rah!

Saturday, August 09, 2008

R Rated

An Open Letter to Mr. Stiller,

Dear Mr. Stiller,

You hurt me today. Personally. I am writing to protest your action against me, I am writing to hold you accountable. Not that I imagine you care, but I wish to explain myself to you.

This afternoon I stopped at a local mall to do some shopping, I wanted to pick up a birthday gift or two for a friend. After shopping I went to the food court to have lunch. Food courts are wonderful places. One can dine on Mexican whilst one's partner dines on Thai - they are places of such diversity. Around me were representatives from many nations, colours and creeds. Around me were those with varying faces, varying languages and varying abilities. I sat in my wheelchair, across the way from me was a young mother with a child with Down Syndrome, over there was a college kid dripping big words from the corner of his mouth. We were an ecclectic bunch, we were.

A skinny girl and a chunky boy with long hair arrived alongside a geeky friend. They were clearly in a playful mood, suddenly one said to the other, "There you go, you went full retard." My heart stopped. It was the first time I'd heard the phrase spoken in common parlance. The first time, the phrase you wrote, you created, you crafted, was spoken in my presence. I cannot tell you how much that phrase hurt me. I cannot describe to you the look of pain on the face of the woman who's child sat with her. A child, thankfully, not yet old enough to understand the meanness of that statement. A child simple by age who will grow complex with disability.

You hurt me a second time today, Mr. Stiller. I am writing to tell you, to hold you responsible. I arrived home and saw on a website that it is now possible to buy tee shirts with the phrase 'full retard' on it. You are responsible for this Mr. Stiller, you wrote those words, you chose those words, you went public with those words. It is you, and only you, who must bear the consequences for your actions.

There are parents, Mr. Stiller, who have to send their children into schools in only a few weeks. Hallways have never been welcoming places to those with differences - even so, those hallways are now even more dangerous than they were when they were abandoned for summer play. A new phrase will tickle the fancy of the privileged and scar the selves of the different. 'Full retard,' this is your creation. One you are no doubt proud of.

But I read interviews with you on the web. Interviews that explain that I 'don't get it' that the humour is about shallow, self absorbed actors, not about people with disabilities. Mr. Stiller, I submit to you that your reaction, your denial, in the face of reasonable protest, reasonable requests and reasonable explaination could only be the reaction of a shallow, self absorbed actor. A person that cannot see beyond his need to express to the need of others to be safe. A person that cannot understand protest as anything other than hysterics.

I tried to find a way to contact you, to write you personally, to tell you of the pain I felt today, of the pain I fear tomorrow, and of the concerns of millions of parents, millions of people with intellectual disabilities. I wanted to tell you that you may make a few people laugh for a few hours but you will undoubtably cause many more hours of pain and many more tears to be shed. But as I could find no way to contact you, I resort to this, my blog. I hope that if there are truly only six degrees of separation - that those six between you and I - will get this to you.

Years ago, Mr. Stiller, I met a man with Down Syndrome who was in his late 30's. I met with him because he would no longer leave his house. He abandoned his work (yes, he held a job), he abandoned his friends (yes, he had friends), he abandoned everything he loved and enjoyed in the community. Why? Because he had decided that the world was a cruel place. That he no longer wanted to walk the mean streets. That he never wanted to be called a 'tard again. He had had enough. He would stay in and stay safe.

That was the world before you came into it. It was already bad. But now it is worse. Much worse.

Tropic Thunder will make a lot of money, I'm sure. Box office and momentary popularity is the goal, is it not? It is to shallow, self absorbed actors, so I assume it is to you as well.


Dave Hingsburger

Friday, August 08, 2008

Abso loo tly Beautiful

Look at what I got in the mail! My friend, Susan, is on holiday to the east coast and when they stopped to pee they found that the outhouse had been made accessible. If you look carefully at the picture you can see the disabled symbol painted on a piece of wood. Yep, I got a picture of a ramped outhouse - and was thrilled by it. This is how far I have come as a disabled person.

Imagine Susan travelling through the Maritimes, some of Canada's most beautiful scenery passing by. Ocean vistas, quaint villages, lush greenery ... snapping pictures of it all. But she takes a look at an outhouse and thinks of me! That's cool, I think.

Oddly, things like this can give me a great deal of pleasure. I have written often here on Chewing the Fat about the difficulties of travelling with a disability, finding a disabled loo in a city can be an intimidating, frustrating and messy quest. So it's amazing to think that someone when building this outhouse, in the middle of the countryside, thought - hey, let's ramp this one, make sure that people with disabilities can pee or poo if necessary. You can see from the ramp that there was a lot of work put into this endeavour. I know that a tree is working on blocking the path, but branches move - it is a forest after all.

The ramp is cool.

The thought behind it is even cooler.

So, thank you Susan for taking the picture and sending it to me, for allowing me to post it here on CTF, for giving me a bright spot during a couple of days of disability bleakness.

Here's to the heros among us whose kindness makes the world more accessible, more available.

Here's to the one's who make a difference.

To hell with the one's that don't.

Thursday, August 07, 2008


It is tempting to stay safely locked into a world of like minded people. It is tempting to make an intellectual gated community, carefully selecting who we let in and rigourously ensuring that those 'out' stay 'out'. It's tempting but, in my opinion, dangerous. I spent several hours researching reaction in the disability community to the movie 'Tropic Thunder' and it's negative portrayal of those with intellectual disabilities. I thrilled at the idea that Dreamworks blinked and pulled the 'Simple Jack' promotional website. Grinned that our collective anger brought them to the table. I believe that we all owe Patricia E. Bauer at a big round of applause for her part in bringing this all to light. I was feeling cosy in the disability world, agreed with the outrage, nodded along with comments made by others.

Then, as I like to do, I bit the bullet and did a search of sites that are not disability focused. Sites that might disagree, just a tad, with the idea of our protest. Those that would see us as another infiltration of political correctness. Those that would see us as intruding on their freedoms even as we claim that the freedoms of those with disabilities are being tread upon.

And wow. Was there some real anger. Comment and comment went on about how Tropic Thunder is just a movie. And if you think the 'r word' is used a lot in the movie, it's used constantly in the blogs and writings of those who are furious that Dreamworks has listened, even a little, to our concerns. They all, or most of them, see that we have a wee tiny concern that needed to be considered but that concern did not justify any form of censorship of the movie.

It's just a word, is what they say. It's not a big deal.

Isn't it?

I recieved an email from Dr. Dick Sobsey a few weeks ago and in that email he was telling me that ICAD (the International Coalition on Abuse and Disability) had been reformatted. It had been a listserv (I think that's what it was called) where those subscribed got updates via email on issues internationally on abuse of people with disabilities. This has morphed now into a blog-like existance.

Now located at this site hopes to continue to provide information on the violence faced by people with disabilities in this world where 'retarded' is only a word. By its very nature this website is as depressing as it can be, it documents the real life experiences and traumas of those we care about, those who are vulnerable, those who's pain isn't considered important. But it's a site that needs to exist. It pulls us away from the realm of mere 'opinion' into the certainty of 'fact'.

It is a fact that people with disabilities are targeted for violence.

It is a fact that people with disabilities are sought out for hurt.

It is a fact that what starts with hateful words ends with hateful actions.

Therefore it is of utmost importance that we collectively do what we collectively do. That we shout down those who think that we are politically correct finger waggers. They need to learn that we know how hate starts and where hate ends. We need to continue to see the real world as a dangerous place that needs our attention, our concern, our voices and our action.

I can read the comments of those who think we are over reacting and I can debate those comments because, through ICAD, I have facts ... it is they who have only opinions.

Wednesday, August 06, 2008

Words Hit Like A Fist

Several years ago:

A man with Down Syndrome leaves a movie theatre in Manhattan, a group of young girls come out from a showing of 'Something About Mary' flinging the word 'retard' around. He freezes, terror crosses his face. They hit him. Hard. Like a fist. I still see his face in my mind.

A year ago:

Shopping at Longo's just north of the office the produce manager loudly calls one of his staff a retard. I blow up and create a scene. Everyone forgets what the man says and wonders why the fat guy in the wheelchair is being bothersome.

8 months ago:

Staff stops by my office and tells me that on an outing to a food court several teenagers get up and move from their table saying they "Won't sit next to retards." Staff is furious but doesn't know what to do. Creating a scene would embarass those they are there to support. They feel sick. Powerless. Angry.

3 months ago:

In conversation with our self advocate facilitators, I am told that the subject of the word 'Retard' came up ... a painful discussion follows. Each has been hit. Hard as a fist.

1 month ago:

Two clerks holler back and forth in a store, calling each other retards. I remember the failure at Longo's ... I say nothing. Don't know what to do.

Then, I thought, "Enough."

I hear that damned word everywhere. In the mouths of seemingly everyone. It's like people have forgotten that words have impact, that words can hurt, that words can bruise. It's like people have forgotten that what comes out of our mouths defines who we are. It's like people have forgotten that those with intellectual disabilities can feel pain, real pain.

That damned word leaves us helpless. Not knowing what to do or say, wanting to act but not knowing how. I cower at the size of the problem, at the casualness of the prejudice. And yet I have never really confronted it. Never really done anything except to assure that those around me never use the word. Never say it in my presence. But that is not enough, that protects only me.

I wanted to do something. Along with my agency, my executive director, I decided to do something. I sat down and crafted a business card. On one side it read: Words hit like a fist! On the other side it says:When you use words like “R#tard” or “R#tarded” it hurts people, I heard you and it hurt me. Many people with disabilities consider “R#tard” the most offensive word referring to disability. I agree. Bigots use negative terms for minorities. R#tard is the same, it’s hate speech used by bigots. Consider carefully your words in the future.Because…Words Hit, Hard As a Fist. So, JUST STOP IT.

I envisioned making these for each of our staff, for each of our members. I envisioned using them in place of loud and useless confrontation. A few words that outline that bigots use words like these, that people hear those words and are hurt by them, that this is hate speech, that people with disabilities are a legitimate minority - and deserve respect as such. A few words to confront. I envision these cards being ripped up and thrown away. But I hope. I hope that the words stick like words do. That the words rankle like words can. That the words prompt examination like words will.

Retard is just a word.

So is Enough.

Even if we fail at making change in even one person, I predict we will make change in ourselves. We will be emboldened by this action. We will know what the extent of our own courage is. We will know better our own minds. I predict that as we change ourselves we will discover that silence, once the comfortable option, is no longer acceptable. The change we discover will not be anything more than the tossing off of complacency.

Even before the news broke about the movie 'Tropic Thunder' I had had enough. Even before those who know better but don't care were outed as disphobic bigots. Even before ... I had had enough. Meeting with Manuela this morning we talked about this card, about using the card, about beginning to action. We agreed that Vita will give this design to anyone, give these words to anyone, we will not copyright what we have created. Because this is about only one thing.


Against them.


Tuesday, August 05, 2008

Failure - A Three Part Sympony

Yesterday was a lovely day. We started the day by going down to Ashbridges Bay so that I could sit in the shade and read and Joe could go for a walk on the boardwalk. We arrived and found a spot that was just off the bike bath and a few feet away from the boardwalk. It was perfect as I had a few of the volleyball courts and the lake beyond that and I was under a lovely shade tree so there was no chance of my bald head getting burned. Joe made sure I was OK and then went off for a long walk along the beach. I pulled my book out of my bag and began to read.

Every now and then I'd stop and look up at the view. There were almost naked young men and women playing volleyball and their joy of being young and in the sun could be felt all the way over where I was. Sometimes I wonder if I was ever that young, ever that carefree, but I know I was - it's just hard to remember that sometimes. But then I'd be called back by the book I'm reading. It's got an intense plot and I'm only a hundred or so pages from ending.

Then I heard five people arrive behind me. I turned to see two staff, they were obviously staff, with three women with intellectual disabilities. These women would have worn the label 'low functioning' or 'profoundly disabled' back in the days when disability was put on a gradient. One staff said to the other, "Where do you want to go?"

Failure Number One: Who cares where she wants to go? It's not her outing! You are both at work and your job is NOT to have a lovely time in a park. That's a side benefit, sure, but it's NOT the job. The job is to ensure that the three women who are with you have a nice time. It's impossible to have a nice time when you are herded along with no choice, without the dignity of even being asked where you want to go. You could tell that these two staff had stopped considering these women as communicators, as people with choices, as people who might just have a frigging preference.

As the two staff were discussing which way to go, one of the three women had noticed the volley ball play, and started, independently, to move in that direction. The staff, still discussing the direction to go, noticed her movement and pulled her back into place.

Failure Number Two: Right there one of the women indicated a preference. Communicated in the best way she knew how about where she wanted to go and what she wanted to see. Instead of noticing an act of communication, the staff - thinking that her behaviour was meaningless - pulled her back into place. Treating her like an errant child not a woman communicating choice. I wonder how many times their voices have been ignored, discounted, silenced.

They settle on a direction and pass by me heading west. I turn to watch them walk and notice that the woman who had indicated that she wanted to head over to the volleyball courts was turned and continued to look at the courts. The sun hit her eye and I saw a glint there. I put my gaze on hers and slid to see what she was staring at. She was looking at a group of young men, maybe in their twenties, playing volleyball. They were all, to a one, wearing orange shorts and nothing else. The sun had burnished their skin, their bodies were fit and strong, they played with the exuberance of young dogs casting themselves in the air.

I looked back at her and saw that she did not break gaze with these young men until she was out of view. Then she turned a trotted along behind the staff.

Failure Number Three: If it were anyone else I would have immediately understood that she was looking at those beautiful bodies. I had thought that she was attracted to the motion, to the games, to all the activity. What was I, nuts? I know better than to diminish someone's sexuality because of their disability, don't I? Of course she'd be attracted to sun and skin and sexuality. While I castigate those staff from not noticing her clear communication, I castigate myself for noticing her disability first, her humanity second.

Seconds later Joe came back and we headed off to find a place to sit together. "Tell me that you had a nice time and that something bloggish didn't happen," he said. I smiled without speaking, "OK, well leave it till tomorrow, this is a holiday."

And that's what I did.

Monday, August 04, 2008

Talkative Legs

A half block away from where we now live is a fairly large indoor mall. We access it by going down a long and fairly steep driveway into an underground parking garage and then take the elevator up. My heart is in my throat as we descend the steep slope, I know that if Joe lets go or I lose my grip I'd be in serious trouble. I think that fear is why we both laugh so much on the way down.

Yesterday we went over to the mall to catch a movie and do some grocery shopping. To do all this without getting in a car is wonderful. The grocery store is completely accessible until it comes to paying. The little laneways are too narrow for me to get through at the till. So I left Joe to pay and rolled along the corridor heading towards the liqour store where we needed to pick up some beer.

I stopped just outside the store and waited for Joe to catch up. While waiting a guy of about my age, with cerebral palsy, passed by on his electric scooter. He drove into the bookstore, thought better of it, and came back out and continued on his way. As he came by me I really noticed his legs. He was wearing short pants, which made sense on a hot summer day, and his legs were wounded - both of them - from knee to ankle.

There was no time to count but I'd guess each leg had at least thirty fresh wounds. All of them looking like bumps and scrapes. He wasn't the best driver, that I could see by the way he haphazardly made his way along the corridor, first zigging then zagging finally zogging. There was a jagged sort of rhythm to his driving. Each one of those injuries stood testifying to a life lived on the edge - each told a story. Years ago men like him didn't have legs that told stories.

There must have been the real sense of adventure in every foot of his journey. All along the mall corridor there were things to bump into, things to knock over, feet to squash. It was like an obstacle course for him. Yet he calmly and placidly just continued on. I respected him, admired him even.

Yet in minutes he had turned into another store and was out of view. I waited to hear a crash because he'd gone into a kitchen store that was full of china. I smiled as I imagined a horrified clerk not really knowing what to do as this crooked man made his crooked way down very uncrooked aisles past towers of china tea pots and fragile plates.

But there was no crash. No catastrophe. A few minutes later he emerged from the store with kind of a wicked grin on his face.

Kind of like the one I feel on my face when we are halfway down the steep ramp and I feel Joe's grip slip a bit.

What's life without a bit of risk?

Sunday, August 03, 2008


OK, I scared myself today.

I'm used to the lost agility that rides astride the twin horses of age and disability. Don't even think much about it. I've got my handy tool for picking things off the floor, I've lowered my expectations to well within reach, I'm good.

But I've always kind of prided myself at being mentally quite agile, I can fish for ideas from both sides of a stream, man, when it comes to being able to follow the fox, I'm almost lithe. Or so I thought. Until today.

This is our first real weekend in our new apartment. Last night we planned the day and had a list of three things we wanted to do, we put the list in order, we got up knowing what was going to happen and when it was going to happen. Then the cell rang. A friend was passing through town and wanted to drop in and visit, see the new apartment and catch up. Taken by surprise though I was, I cast aside our plans and agreed to the visit.

He'd be here in three hours.

So Joe and I had to pare the list down drastically. We managed to do so but then became completely discombobulated for the entire morning. We were like elderly versions of the Keystone Cops, our communication missed marks, our understanding of the day clashed, we tripped over each other as we went the same way differently. I actually found myself thinking ...

"I wish people would give us notice before just dropping in."

Um, three hours notice, and we were ASKED if it was ok.

Where was that mental flexibility of yore? Where was that guy who was good in the moment? Where was the guy who thought people who planned their weekends to the minute were kind of ... um ... anal?


No where near today.

But the visit came and went, we had a great time, ordered in some Chinese for lunch, chatted, yakked and gossiped. Then, an hour later, just after goodbyes. Joe said, "I need a nap."

I stayed up to watch television.

And fell asleep on the couch.


Saturday, August 02, 2008

Phone's In

I created a fuss.

Our phone was supposed to be installed two days ago. As the day dragged on, with no dial tone, we began to suspect that something was wrong. It may not appear it here, on the blog, but Joe and I are the kind of people who have things go wrong - we now anticipate it, live with it, hardly notice it any more. Sure enough, no phone. The following morning I got on the phone with the company and explained the problem. I was told that we did have phone service and if it wasn't working I needed to talk to repair.


Doesn't repair imply that something that worked was now broken. How could we break something that never worked? We actually got the comment, 'That's not my department' and suddenly I was switched over to repair.

The repair guy was a bit confused about having to repair a phone that was installed but never worked. "How do you know it was installed?" he asked. I had no answer to that. He said, "Let me see when I can schedule someone to come out and take a look."

I began picturing a life without a phone.

Then I did it.

At first I thought I was 'using' my disability.

Only at first.

I said, "I need to tell you that I have a disability. Right now I am talking to you on our cell phone but whenever my partner is out with the phone I am left completely isolated. I can't call anyone. If I need help I'm stuck. Without the phone I feel quite vulnerable."

And then I realized.

I wasn't using my disability.

I was telling the truth.

The guy stuttered a bit and said, "I understand." This is a phrase that I have come to despise in the mouths of the non-disabled. They don't understand. They think they understand. They want to understand. But they don't. Can't. Impossible.

I once thought I understood. But I didn't. I guessed. That's not the same as understanding.

He said that he could have someone to me the next morning between 8 and 12. He apologized for the problems and we said our goodbyes. Later that day I got a call on the cell from some young guy who worked for the phone company. He had finished up his jobs, was still in the area, would we like him to come over even though it was after 6. He worked for about an hour outside on the box, then came in tested some things, went to the phone center in the basement and then was back up. The phone was successfully installed.

I thanked him, he shook off the thanks, 'No one should feel unnecessarily vulnerable," he said.

Maybe they did understand.

A little.