Payback

Do you remember the other day I wrote a post about 'being a bother'? I went on (some would say on and on) about people being just too busy to pause for a second to let me pass, too hurried and harried to be a little patient. Well, sheesh.

My new wheelchair is quite quick. I usually leave it on power level 3 of 5 because that's Joe's walking pace. But when I head out on my own, I open that sucker up. I am still not quite confident with the chair and only seldomly get up to 5 for very long. I've enjoyed learning to weave my way in and out of crowds of people, never hitting or even nudging someone else.

As someone who has always been stared at because of my size, it's nice to have a kid notice me whizzzzzzz by and hear him saying, 'Wow, cool.' Very nice. I've veered off course here, probably avoiding the topic.

So, there we were. We'd just come down in the elevator and were heading over to the grocery store. I rounded a couple of teens who had taken root by the foot of the elevator. They were both talking on cell phones and, in the manner of teens, adopting loutish expressions. After passing them I found myself behind someone using a walker. Slowly, slowly ... s . l . o . w. l. y. making her way along the walkway. I am constantly astonished at how much space some small people can take up, and this was one of those situations. She wouldn't have made a dent in a cushion but she took up an entire walkway.

I found impatience welling up in me. "Comeoncomeoncomeoncomeoncomeon ..."

Then.

I took a breath. She's going slowly to me - now, because I'm in a speedy chair. And. AND. Who is so important that pausing for a second will make or break a day? I took anohter breath, and waited. She felt me behind her and turned and saw me calmly waiting, 'Thankyou for your patience,' she said having only seen the best part of me.

The part I want seen more often.

It's Nick Mitola Appreciation Day

I'm crushing on Nick Mitola. You've got to love people who know what's right, who do what's right and who stand for something, and that would be our Nick. I read an article about him yesterday and can't find the link today (because I'm rushing what with being on the road). We meet Nick on ABC's What Would You Do? television programme.

I don't know the programme at all but apparently it is a hidden camera kind of show where people's actions to a (unknown to them)staged event are captured on film. In this case, ABC hired blind actors to go into a store and order something, they would pay with a $50 and the clerk would cheat them by handing them two singles saying that they were a $20 and a $10. The question was, would bystanders help.

In the set up the clerk (an actor) first begins by acting rudely. Saying 'Hey Helen Keller, step up' then making other demeaning and disphobic remarks. While there were people who intervened when the clerk cheated the actor and actress (way more intervened when the woman was cheated than when the man was cheated) no one did or said anything about the demeaning remarks, the nasty disphobic language that was used by the clerk.

Until our Nick arrives on the scene.

From the moment the clerk says something nasty, Nick tells the clerk to stop being patronizing and when that doesn't work, Nick rips him a new one. Nick didn't care that he was creating a scene, he didn't care that others in the line were staring at him, he didn't care ... he just cared that the clerk was being a jerk and he wasn't having any of it.

It was almost like Nick understood that these verbal putdowns and the clerks harsh attitude was the problem. Sure the money theft, later, was equally a problem. But in many ways the theft resulted from the attitude. The idea that blind people were a bother and taking advantage of them a rightful consequence to their daring even to enter a public place. Nick got pissed at the right time, for the right reason, at the right person. Most people with disabilities, indeed most people from any visible minority know, it starts with attitude and ends with practice.

Hurrah, Nick! For getting it. For doing something about it.

Disabled people shouldn't have to rely on knights in shining golf tees, there should be identifying features on bills so that the kindness of strangers is unnecessary, but until all that is in place ... Thank God (literally) for Nick and people like him.

So Nick, babe, I've got a crush on you, Sweetie Pie.

(waiting)

So the interview is all set up and I'm nervous as a cat. I've done a billion interviews over the last several years, on camera, on tape, on notepad. While I get nervous in front of an audience, I've never really been nervous in front of an interviewer. I know I know what I'm talking about. I'm confident in what I have to say. I'm pleased that I get a chance to say it. So, no problem.

But I got an email the other day from some guy in Alberta who writes for a magazine that covers a large region that includes the town I was born in, the town where I grew up and the town where I have relatives on both sides of the family. Apparently he's looking to do an article on people from the region who went on to some kind of international success in their chosen fields. And he picked me as one such subject.

This is way cool.

Small town boy hits it big.

I told him that he could send me some questions and I could jot down some answers but he wanted to do the thing live, so we've set an appointment to talk next week. I don't know how he found me, what he knows of my work, or what he really wants to talk about. When I realized that for the first time the interview was going to be about 'me' not about abuse, or sexuality, or disability, or self advocacy or any of the things that I know about, I got nervous. I'm not so confident on the 'me' front.

What's there really to say?

I'm not being falsely modest here but really, what's there to say? I live in Toronto, in an apartment. Most days I go to work at Vita, other days (like tomorrow) I travel internationally and speak. I write blogs and I write books. I like cooking and walks along the beach (actually I hate the beach, sand and fat people don't mix, well they mix but sand keeps reappearing in odd and unpleasant places for months and months). I don't want to talk about those things, I want to talk about prejudice and progress, about advocacy and awareness, about rights and responsibilities. That's what's interesting.

For many people that knew me then, though, all this will be such a surprise. I was the 'little engine that couldn't, wouldn't, won't'. Little was expected. Little was predicted. Nothing was hoped for. Maybe that's what I need to say. I need to remind parents and teachers to look at those in their care again, those that they've written off, those that they feel are destined to failure. Maybe they need to look deep into the eyes of the kids at the back of the class, the kids that live in the cold room in the basement of a parent's heart. And when they look there, prepare to see something more - potential (waiting).

ARRRRRGGGGG!

I wish I could hop.

Because I'm hopping mad. I don't listen to talk radio because my heart can't take it. I get all worked up and start yelling at the radio. I live in a world wherein I'm surrounded by sane people who know what a scapegoat is and who try to avoid having one tied up in their mental meadows. I live in a world were people, for the most part, try to help not hurt, heal not wound. I live in that world and choose to believe that IS the world.

But because I was interested to see reactions, after reading the story on-line yesterday about the 93 year old man who is mostly deaf and somewhat blind, who is dealing with some serious form of mental decline. This old guy was found guilty of sexually assaulting his two daughters 50 years ago. The judge determined, due to the man's health and failing mental functions, that he would not have to serve jail time. Controversy ensues.

But this blog isn't about justice at all. I'm not even going to offer an opinion here. After reading the article I went to look at the comments about the guilty verdict and the lack of jail time.

Whoa!

Let me say again ... Whoa!!

All these people were full of fury over the lack of jail time, ok I get that, but many went on to say that 'at least God had punished him with his physical and mental disabilities'. There was a clear sense of a vengeful God smiting this guy with the disability stick and leaving him tortured with disability in payment for what he did to his daughters.

WTF!!

Not one sane voice came forward to point out that ...

A) disability isn't caused by sin

B) people with disabilities aren't sinners aptly punished

C) having a disability isn't a form of torture

The guy, apparently, is dealing with disability because he's 93 years old! This isn't about a vengeful God (what are they thinking that God got delayed on the bus and got to this guy's house 50 FREAKING YEARS LATE!!!)

So get it ... if sin caused disability ... we'd all, every single human being, would be reading this in Braille.

Putting Henry in His Place

I begin to wonder what people think, really think, about Joe and I. Certain members of my parent's generation refer to us, think of us, and relate to us as room-mates. That's all their minds can do and to greater and lesser degrees, we're ok with that. We have always recognized that our anniversaries are seen as less important and less significant than those of our heterosexual friends even those who are on marriage contract four or five. But we go on being a couple and acting like a couple and we figure that eventually the world will catch up ... as it has in many ways.

This is all background for what I want to write today. I know this is going to sound petty and whiny, but it's been bothering me and I determine to write what bothers me. So here goes ... it's about the power chair.

Henry, my lovely blue power chair, is a wonderful machine. He moves me quickly from place to place, I can independantly go where I used to go before. Lovely. I'll say to Joe, meet you in 10 minutes and then head off to do what I need to do on my own. I love those moments where I feel I'm independant. But I always, I guess it's expected after 40 years together, feel like I'm an independant part of a greater whole. That I leave Joe only to come back to him. That I go to the drug store only to meet him in the book store. He still is the beginning and the end of my journey.

But people say the oddest things: (to Joe) "Well, you've been replaced." "What are you going to do now that Dave doesn't need you anymore?" "You're going to be left behind now."

As if that wasn't bad enough: (to me) "It must be nice not to need Joe any more."

I'm stopping with that one because I feel upset rising in my chest.

These things are all said with good humour and I know that people are not meaning what they say. But the fact is ... they are saying it ... repeatedly.

Joe can never be replaced by anything. Have you met him? He may be the finest person I know and I am forever in awe at the fact that I get to live with him. These words of separation which express somehow a life without Joe are frankly frightening and unsettling. I cannot be who I am if he does not continue to be who he is. I hope the reverse is also true.

So, yes, I have a new power chair. And yes, it's nice that I have a degree of independance that I didn't have before. But I ride along side of Joe, as I have for the past nearly 40 years, and that's exactly where I want to be.

So please, could you just say, "Nice chair?"

Card The Stars

I remember, quite awhile back, reading Rick Mercer's blog where he used the word 'Torontarded' and feeling devastated. I thought Mr. Mercer was so much cooler than that. From watching him over the years, I had come to believe that he was someone who just got it, whatever 'it' was. That he chose to use 'retarded' as part of a compound word really let me down. But I didn't know what to do, didn't know how to let him know how much he had disappointed me, hurt me. All I did was drop him from my radar - but he'll never know that I no longer watch him and I mute his commercials. I'm sorry, many will say I'm over reacting but I don't care. The issue is important to me. I hate that word.

Then watching a YouTube clip of Bill Maher talking about George Bush, Dubya, I was astonished to hear him refer to President Bush as a 'retard'. Again, I didn't know what to do. I was a huge fan of Bill Maher and watched Politically Correct with Bill Maher whenever I could. I stopped watching. I'm guessing that Mr. Maher, when viewing his ratings, didn't say, 'Hey the demographics for aging, chubby, gay, wheelchair users has taken a hit - what happened?' No, I'm guessing he didn't even notice my absence. I noticed, but that's not what matters.

A few days ago I posted three questions for my readers (I'll have a surprise for all of you as a result of your information - but not for a few weeks) and in it I mentioned the Words Hit cards and the campaign that Vita is undertaking against 'that' word. In the comments Cynthia F asked to be kept up to date about the campaign and mentioned the fact that Dan Savage, a sex columnist in the United States, used the word recently. She said that she believed that he would respond well to education. Well, I'm not sure that I believe that 'education' does all we think it does, but I do believe in confrontation. And from reading Cynthia's comment I got an idea.

So I wrote an email to Manuela, Vita's Executive Director, and asked her what she thougt of us adding 'Card The Stars' to the campaign. What we would do is ask readers of this blog to get the word out about the campaign and anytime you hear a celebrity use the word 'Ret@rd' or 'Ret@rded', indeed any version of 'that' word - email us the context of their remarks along with a snail mail contact address and we'll send a letter and a card to the celeb. Manuela felt that even if it never reaches the 'star' it will get to their people. Maybe someone will notice and maybe someone will care. It's worth a shot. It's a heck of a lot better than the silent protest of simply turning away.

So, should you see any of these kinds of situations please send me an email at work dhingsburger@vitacls.org and I'll make sure that a response goes out quickly. I thank Cynthia for the idea.

CARD THE STARS HAS BEGUN.

Tic Tock

Gentle Readers, I am taking the day off from blogging today because I want to share this letter with you, the writer did not want to be identified other that as a 'loyal reader' and I appreciate her need for privacy and am thankful that she gave me permission to go ahead and print it. I love getting mail like this (versus the not so nice kind where some people tell me what I should write - if I truly cared - and what I should think - if I truly cared). Anyways, here's the letter, thanks Loyal Reader (LR) for the day off and for sharing your insight.

Dear Dave,

I work in the disabilities field. Because I only have just over five years experience in this field in a professional capacity, I feel a bit awkward about sharing my experience, almost as though I would be preaching to the choir. The lesson I learned this week is probably one that many other very worthy disability workers have learned before me. But, I am so excited at having learned this lesson that I just feel the need to share it.

In our service, as in any service for the disabled, there are many people with varying, complex needs. The woman I am writing about is perhaps one of the most challenging due to her complexities. Sometimes passive, sometimes aggressive, and often passive/aggressive, she is also sometimes verbal and articulate, sometimes non-verbal, and often only moderately verbal speaking only short, pat phrases as she determines. Nobody can make her switch from one mode to the other. It is all solely within her own control, based on a system that only she understands most of the time.

That is when her life and health are stable. But, recently, she has come upon a period of extreme instability. Her meds stopped working, so they were changed. The med change was a huge upheaval for her, bringing about all sorts of odd behaviours that after much investigation were found to be from the side effects. A residential change was also part of the equation, making this a most trying and difficult time for her.

So, one day this week when she passed by me in rather close quarters, and her right hand flew up to her face and back down again, all in a very jerky motion, I was concerned. I determined that I would observe a little more to see if this was some sort of a tic, or maybe a small seizure. It could be that it was only a one time event that would never be explained.

But, another worker came up to me a little while later, and asked me if I had noticed this behaviour in the woman over the past couple of days. I told her I had seen it once, while she told me she had seen it several times over two days. We decided that it was imperative to take this issue to management right away, in case she was having even more ill effects from her meds. So, my co-worker did just that.

Yesterday, it was explained to me why this woman was making these jerky movements. She was practicing her Wii technique! Sweet relief is what I felt at hearing this, and I enjoyed a good chuckle at the situation.

Then I got to thinking. Do we get so immersed in our work, take our roles so seriously, that we miss out on some very important elements of the personalities of those we serve? Are we so busy advocating and serving and making sure to 'be there' for our clients that we begin to only see disability around us? When a behaviour occurs, are we guilty of pinning that behaviour on the person's disability and looking for a cause for it? And if so, does that make us so very different from the people we try to inform? If we see 'disability' too much in our daily work, how can we preach to the general public to look beyond the disability?

That was my take home lesson for this week. Sometimes, it's just about who the person is.

LR

What Kind of Jerk Am I?

OK, I'm a prejudiced jerk. Let's get that out of the way right off. I'm mad at myself and have berated myself for the last couple of hours. I'm horrified. I thought I was further down the road to enlightenment. Nope. Dark ages, that's where I live, in the frigging dark ages.

This morning after being afixed to the floor via a complex maze of straps, the WheelTrans driver informs me that we are going to pick someone else up on the way. "No problem," says I. We head off and go quite a ways East and I glance at my watch wondering if I'll get to work on time, I go West. It was very dark and the street was covered in snow and lined with huge snow banks. The driver had to gingerly park near the bank to be out of the way of traffic.

From where I sat I couldn't see anything as she had opened the back door for entry, the side being blocked by a snow drift. I glanced around and all I saw was a long black coat, a cane and a terrified gait. I turned back and waited while the elderly woman was strapped into the seat behind me. I hadn't seen her but I just knew that she had white hair, done in a bun.

Then we hit the 401 and went East, I glanced at my watch, I go West. After making our way through a maze of strip malls we pull up in front of the drop off destination. The driver opens the back door and then assists the elderly woman to her feet.

Then ...

KAZAAAAAAMMMMM!

Around the back of the van comes this incredibly young, incredibly hot (if you were of the lesbian persuasion - oh, straight men too) young woman of maybe 22. Her coat was black, but fashionably cut, she was impossibly thin and her cane was beautiful. She stopped to greet a co-worker and smiled at something he said, sun burst through clouds. She was beautiful. She was hot. She was NOT anything that I 'saw' in my mind.

I see a crutch and assume elderly and frail.

What kind of jerk does that?

A prejudiced one. One that anticipates stereotype rather than makes ready for suprise. One that sees categories not individuals.

I am shamed.

Beat me.

HELP!!

Gentle Readers, I'm not doing a blog today, I'm asking for help on three things. If you are able to help you may either leave a comment or you can simply send me an email, daveandjoe@hotmail.com. I really appreciate any help you can be.

First Request:

I am working on a project, and have been for almost 3 years, and in doing research I came across this little verse. I would dearly like to know who originated the quote. I have found it on four or five web pages always attributed to 'anon'. If you know, I'd be thrilled.

The quote reads: I dreamt of heaven the other night, and the pearly gates swung wide. An angel with halo bright, ushered me inside. And there to my astonishment, stood folks I'd judged & labeled as quite "unfit," of "little worth," and "spiritually disabled." Indignant words rose to my lips, but NEVER were set free, for EVERY face showed stunned surprise, not ONE expected Me!

Second Request:

At Vita we are gearing up to really begin a campaign against the 'R Word'. Many of you remember the Words Hit cards that we produced around the time of Tropic Thunder. We've waited to have distance from the movie to begin, we didn't want this to be seen as a protest against words in a movie rather than words in the mouths of our neighbours. In doing some research we came across that wonderful speech by Soeren Palumbo against the word and in defense of his sister. We'd very much like to send him some of the cards. We found him on Facebook and to my surprise Manuela, our ED has a facebook page ... who knew? ... and she sent him a message on his page. We'd like, however, to send him a letter along with some cards. If you know how to get ahold of him, we'd appreciate it.

Third Request:

We are watching a box set of Holocaust, the miniseries starring Meryl Streep and James Woods, and in it there is a scene wherein James Wood's character, in a concentration camp was being taught what the various triangles meant, brown for Gypsy, pink for Gay and so on. Then the character picks up a white rectangle with the word BLOD on it, the O had two dots over top of it. He asks what it means. He was told that it was for the disabled, the morons, the unfit, he asks their crime and you know the answer. We've read a lot about the Holocaust and I've searched before for the symbol for those with disabilities and never found any reference to any such thing. The movie claims to be quite well researched. Does anyone know about this? Does anyone know what it means? I'm guessing from a bit of googling it is a reference somehow to 'bad blood' meaning 'unfit'. Any history buffs out there? Penny are you reading today?

For those who came for a blog today, I'm sorry, I'll be back at blogging again tomorrow, every now and then we need to ask for help.

HOPE I WASN'T A BOTHER!

Oh Bother

I really don't like being a bother. Really. I don't. But I think we need to define 'bother'. At least I do. So, read along if you'd like but this blog is written for the sheer joy of bitching about my day.

Before I became disabled, I would often hold the door open for people (not women, people) carrying groceries, small children and in one memorable case, a fridge. I did not find it a bother, ever, ever ever ever.

Before I became disabled, I would often stop to let someone pass. It cost me nothing to break stride, to pause for a second, it isn't war it's a walk. I did not find it a bother, ever, ever ever ever.

Before I became disabled, I would often reach to get something on a high shelf for someone of short stature. It didn't trouble me, I'm tall, it took a second, big deal. I did not find it a bother, ever, ever ever ever.

But today when over at the mall after work, I had to ask someone to hold the elevator door so I could drive in. She glared at me like I had caused her great disturbance by needing a wee bit of assistance. I HAD BEEN A BOTHER.

Then, yeah I'm going through the list, a man rushing by gave a loud disgruntled groan because he had to break stride for my wheelchair which was going too fast to stop for him. He rolled his eyes and then glanced at his watch. I HAD BEEN A BOTHER.

Then, I wanted to look at a book in the bookstore that was just a bit out of reach. I asked a staff from the store, a frigging staff from the frigging store, to grab it for me and you'da thought I'd asked her to have my frigging baby. She did it with resentment sqeezing out of every pore. I HAD BEEN A BOTHER.

MY PRONOUNCEMENT TO THE WORLD

When exactly did you all get so important that a few seconds would disrupt your day. Unless you are a frigging heart surgeon racing to unclog a valve, seconds don't matter.

And if they do you are ...

a) hopelessly disorganized and nothing you frigging do is going to help.

b) you have an empty life that you are filling with meaningless things and a second's pause may cause you to confront or acknowledge the void you are attempting to flee from.

c) you are a helplessly self important jerk and people only pretend to love you.

d) c was a bit harsh, but I'm pissed off, people do love you - but you probably have to buy them presents regularly.

I have decided that I'M GOING TO BE A BOTHER. I'm going to ask people for a couple seconds of their day. It's my mission. It's my purpose. It's my way of bringing some sanity back to the world.

Where can I get an I AM A PROFESSIONAL BOTHER ... tee shirt.

They Shoot Horses Don't They - Or Maybe Not

Nikki, the woman who works diligently at Diverse City Press trying to hawk my books to the unsuspecting world, sent me an email with this picture and the following words. Nikki takes time off each year to do horsey things at the Royal Winter Fair and keeps up wit the horsey world. Nikki said that she didn't typically send along these kinds of posts but thought that I would like this one as a 'feel good' story that was making it's way around the horsey email set. She was right, I did. I'm going to present the writing that came along with the pictures and then, I'll see you again at the end ...

Meet Molly.She's a grey speckled pony who was abandoned by her owners after Hurricane Katrina hit southern Louisiana . She spent weeks on her own before finally being rescued and taken to a farm where abandoned animals were stockpiled. While there, she was attacked by a pit bull terrier and almost died. Her gnawed right front leg became infected, and her vet went to LSU for help, but LSU was overwhelmed, and this pony was a welfare case. You know how that goes.

But after surgeon Rustin Moore met Molly, he changed his mind.He saw how the injured pony was careful to lie down on different sides so she didn't seem to get sores, and how she allowed people to handle her.She protected her injured leg.She constantly shifted her weight and didn't overload her good leg. She was a smart pony with a serious survival ethic.

Moore agreed to remove her leg below the knee, and a temporary artificial limb was built. Molly walked out of the clinic and her story really begins there.

'This was the right horse and the right owner,' Moore insists. Molly happened to be a one-in-a-million patient. She's tough as nails, but sweet, and she was willing to cope with pain. She made it obvious she understood that she was in trouble.The other important factor, according to Moore , is having a truly committed and compliant owner who is dedicated to providing the daily care required over the lifetime of the horse.

Molly's story turns into a parable for life in post-Katrina Louisiana .The little pony gained weight, and her mane finally felt a comb. A human prosthesis designer built her a leg.

The prosthetic has given Molly a whole new life, Allison Barca DVM, Molly's regular vet, reports. And she asks for it. She will put her little limb out, and come to you and let you know that she wants you to put it on. Sometimes she wants you to take it off too. And sometimes, Molly gets away from Barca. 'It can be pretty bad when you can't catch a three-legged horse,' she laughs.

Most important of all, Molly has a job now. Kay, the rescue farm owner, started taking Molly to shelters, hospitals, nursing homes, and rehabilitation centers. Anywhere she thought that people needed hope. Wherever Molly went, she showed people her pluck. She inspired people, and she had a good time doing it.

'It's obvious to me that Molly had a bigger role to play in life, Moore said. She survived the hurricane, she survived a horrible injury, and now she is giving hope to others.'

Barca concluded, 'She's not back to normal, but she's going to be better.To me, she could be a symbol for New Orleans itself.'



This is Molly's most recent prosthesis. The bottom photo shows the ground surface that she stands on, which has a smiley face embossed in it. Wherever Molly goes, she leaves a smiley hoof print behind.

**

What intriqued me in this story was the vet's ability to see the horse, not the injury. His ability to notice character, and intellegence and will to live, not the cost of the treatment, the difficulty of the surgery, the 'uselessness of a horse with three legs'. I wonder how this vet comes to have skills that doctors seem often not to. If a person with a disability does not speak, there is often an automatic assumption that the life isn't valuable and that a DNR death is preferrable. Remember paramedics left Barry Baker to die because they could not see his value. This horse was saved by a vet who could see an animal's humanity, while doctors refused food and water to Martin Ryan, a man with Down Syndrome, with the intention to starve him to death obviously saw an animal where a human stood.

Viktor Frankl once said that any doctor who could not see the humanity of their patient was not a doctor but a veterenarian. I'm now wondering if that would be such a bad thing.

Thanks, Nikki, for the story, and You Go Molly!

Our Father

In my humble opinion I think the two most important and powerful words in the Christian Bible are, 'Our Father'. I believe that the use of the word 'Our' is of incredible significance and importance. 'Our' is a word of inclusivity, it is a word that understands the concept of 'all'.

Whenever I was told that I did not belong, could not belong, that God's heart did not have the capacity to include me, I rested my battered faith on those two words 'Our Father'. They are words that challenge me when my heart leans towards bigotry or it's daddy self righteousness. They are the words that remind me of the goal of every movement I have belonged to, every march I have walked in, every dream I have had.

Our Father.

Inclusivity and welcome.

Bigger.

Family.

I have always believed that we are different persons but one people, that we have a diversity of appearances but one soul, that we have a complexity of wants but one set of needs.

When first told that I, as a gay man, did not belong, it did not ring true to me.

Because I had said, 'Our Father'.

When first told that I, as a disabled man, needed salvation, it did not ring true to me.

Because I had believed in, 'Our Father'.

When first told that God's heart embraced bigotry and countenaced prejudice, it did not ring true to me.

Because I had prayed the, 'Our Father'.

Today Barak Obama becomes president of the United States of America, as a Canadian I welcome the flow of hope that wafts warmly across our frozen border.

Perhaps today we all understand a little bit more the power of that one singluar word ... Our.

Christina's World Wasn't

Well knock me down. I was browsing on Patricia Bauer's blog as I do every day, several times a day - no one in the blogging word updates as often as Patricia does. She keeps me current on what's happening in the disability world, she is one of my several blog heros. I popped onto her blog on Sunday and read an article about the death of Andrew Wyeth and information regarding the picture 'Christina's World'. I loved that picture the first time I saw it. There was something in it that spoke to me, something deep - art, like dogs and little kittens, have entry to parts of my heart kept barred to everyone and everything else. That picture was one such picture.

When I first read about the picture being of someone with a disability and Mr. Wyeth's desire to paint someone who may be 'limited physically but not spiritually' I was tremendously moved. Mr. Wyeth was able to see that disability didn't reduce one's humanity, didn't take away one's spirit ... no, instead disability can do quite the opposite.

I shouldn't have kept reading.

Then I read that Christine Olson "refused to use a wheelchair and preferred to live in squalor rather than be beholden to anyone. It was dignity of a particularly dour, hardened, misanthropic sort ..." and the meaning of the picture changed for me. I had always seen Christina's World as being huge - limited only by imagination. I saw her aloneness as momentary, that her world was just there ... just there at the top of the hill. It was a beautiful image to me. It spoke of hope to a singluar and lonely boy .. who wanted a world waiting at the crest of the hill.

But now, I see her world as so small. Her refusal to accept the use of a wheelchair, to drag herself around, to accept nothing from no-one. I see a world limited by inablility not disability - two wildly different things. This painting, suddenly, became incredibly sad, unbearably tragic.

Years ago I remember hearing Paula Poundstone (whatever happened to her?) doing stand up comedy and talking about how, when we flush the toilet, small droplets of feces drift upwards into the air. Then after a dramatic pause, she said, "You can be too well informed."

That's kind of how I feel about this painting now. I'm too well informed about it, I will have to look at it and look at it and look at it again, to see if what I saw is still there, if what I needed to see was still available to me ... I suspect it is not.

Christina's World ... could have been, but wasn't, beautiful. Let that not be said of any of us, for any reason.

That Old Black Magic

Since I've started taking WheelTrans to work on a regular schedule I get in quite early in the morning. I'm thankful of having a key to the office as now I'm often the first to arrive. I like mornings, I like quiet. I like the fact that I can catch up on phone messages and answer all my emails, long before 9 hits. As I know my energy is morning energy so I use it while I have it. My afternoons tend to be full of 'old man' energy and while it allows for delightful naps, it's not much good for decision making.

So, recently, I was in my office focussed solidly on the computer when I noticed movement out of the corner of my eye. The source of the distraction was a woman with a disability, bundled up in winter coats and gloves, wandering around waiting for someone. I've seen her almost every day at the office. Her father drops her off and she marches straight into the office and into her routines. She's not the smiley sort. She's not the chatty sort. But even so, I always greet her with a cheery 'good morning' and she greets me with a chilly level stare.

I'm no longer shallow enough to be put off by appearances. I know that social skills are difficult for some. I know that some other's rigourously follow other social rules, like, never talk to strangers. It's costs me nothing to give a morning greeting. It costs me less than nothing to be pleased with just a glance as acknowledgment.

So, focussed as I was, when I noticed her and did my usual greeting, I went back to what I was doing. Then suddenly I heard a voice, "I think I'll just sit here." I turned from my computer and saw that she had sat down at a chair in front of my desk and was smiling at me. In truth it looked more like 'baring the teeth' but I'm sure it was a smile. I glanced back at what I was doing and then pulled my attention firmly away from the computer. THIS is what I'm here for.

"That looks to be a fine place to sit," I said. And we were off. She talked. I hadn't heard more than a word or two from her over all the time I've known her. She talked about her family, she talked about her desire to travel, she talked about what she did around the home. She let me know that she knew about safety and told me that when she stayed home alone she never answered the door, and never picked up a ringing phone. She intended to stay safe." It was quite a conversation, but suddenly it was over. She looked down the hallway and saw someone, she got up without a glance back and left.

One of my co-workers stuck her head in my office and said, 'What magic did you work? I've never heard her talk before.'

Magic?

No.

Patience and persistance, maybe.

Here Goes

The most difficult thing about writing a personal blog is the word 'personal'. Sometimes I want to write something because it meant something important to me but I fear how it will sound, how I will seem, and how it could be taken. I think everyone worries to some extent about the image they portray, everyone tries to project an amalgam of the person they are and the person they would like to be. This makes honesty sometimes an unappealing route to take in recording, publically, an important personal moment.

When 'it' happened, I knew immediately that I wanted to blog about it. A millisecond after the idea of blogging 'it' the thought 'and just how will you pull that off without seeming pathetic' struck me. So I've wrestled on and off with writing about 'it'. Last night after getting home from the mall, where I only crashed into one door jamb in 'Henry' my power chair, I even spent a while reading past comments, reminding myself that I have nice readers with kind spirits.

Oh, no, I've just re-read what I've written and now I'm worried that I've given 'it' too much build up, it's not that big a deal. But, I'm not erasing what I wrote and I'm not going to just change the topic.

What 'it' was.

I was at work yesterday, my office overlooks a vacant field and I watched as the snow swirlled around making small science fair sized tornados. I had just finished the edit on a policy thing a ma jig that I had been asked to edit when one of my fellow co-workers came into my office. She is someone I have come to really like, even admire. In my unerring ability to misjudge people, I flat out didn't like her when I first met her. I was wildly wrong on every count that I had first held against her. I am, with age, learning to slow down my judgements. Anyways, she came in with a question and we began talking.

Then, out of the blue, appropo of nothing, she complimented me on the colour of my eyes. I was startled and blushed like a schoolgirl, because I too, like the colour of my eyes. I get complimented a lot on my work, on my lecturing, on my writing, on things that I do ... I never, ever, ever, get compliment on anything to do with my looks. Well, never, ever ever, is wrong, Joe does - but then Joe knows how to butter bread. But other than him. Never. Ever. Ever. New shirts are never noticed. Haircuts occur in a vaccuum. No one ever, ever, ever says anything about me physically.

Hold on now, as I'm writing this I realize that sometimes when I write something about being unattractive, belted with the ugly stick, people writing in and essentially say, 'you're not that bad' ... which isn't a compliment - it's reassurance, which is a long way from being complimentary.

So back to the compliment. I don't live my life in need of compliments. I like the recognition I get for my work, I like the feedback I get from lecturing - sure. But personal compliements - I don't even notice their lack, until something like this happens. An out and out compliment.

And I won't lie. It felt nice.

Now I'm near the end of my post and I don't know how to end this. I don't know why I'm telling you or what urges me not to hit the delete button. I'm absolutely NOT asking people who know me, who see me for tea, who meet with me, to suddenly flower up their language, to scan me desperately for something nice to say - don't do that you'll embarrass the hell out of me. I do not want to get comments full of compliments, projectile vomitting can ruin a computer. I am absolutely NOT wanting to sound like a whiny baby complaining about how tough it is to be born me - I don't want to be anything other than who I am, I have grown comfortable in here.

I just wanted to say, that someone, for a moment, noticed something nice about me, physically, and said something about it. I don't know if it took courage to do so, maybe it did. But she did it so naturally and so honestly that it seemed that she had been able to look over the huge mass of me and see something sparkling therein. A nice skill to be blessed with.

A nice blessing to give.

E Mail

Whenever I see his name on an email in my in box, I gasp. It means he is still alive. We met a couple of years ago and talked then about working on something together but when we reconnected this year, I decided to really put an effort into writing him regularly. I didn't even care if anything came of it, I just wanted him to have another person in the world to care for him.

He wrote me yesterday. In the email was sadness and loneliness. In the email was anger and loss. In the email was the full range of rage and outrageous humour that one expects from someone in a situation of undeniable tragedy. He is a handome young man with an intellectual disability. He is a gay man. He is dying of AIDS.

I wrote him just before Christmas, just a note to let him know that I've been thinking about him. He had told me that Christmas was lonely as he'd been kicked out of family and lost most of his friends. His health has been up and down but he makes it occasionally to a internet cafe where he checks his email. I know how much emails from friends are appreciated. I often read them over and over again. It's nice to be remembered, it's nice to get mail. And I wanted him to have something at Christmas.

So I got an email from him today. It means he is alive. I was pleased he bothered to write. I was pleased he had the energy to write. In his email he said that he still wanted us to work on something that would talk to the world about how people with disabilities, intellectual disabilities, get AIDS. How people with intellectual disabilities may trust too much, may be tricked to easily, may not see deception because of a need for affection. He's a deep guy.

I have a few pictures of him with Joe and I, and when we've written a litte more together I want to introduce you to him. My new friend. My new co-writer. I want to let him tell you how important it is for real world training, and real world expectations be brought into real world planning for all with disabilities. He didn't need our protection, he needed to know how to protect himself. It is there that we failed him.

It is his wish that we never fail another.

His wish, is our mission.

Requiem

Barry Baker.

Remember that name.

Let me tell you a bit about him. He was this 59 year old guy who lived a lone in the home he grew up in. His parents passed away. As a batchelor in his home, it grew into a state of messiness that is common for college kids and me on busy weeks. He'd had a series of health problems, he was overweight, he'd had a couple of hip surgeries and he walked with crutches. Barry, though, wasn't one to sit alone at home. His life was as exactly full as he wanted it to be. He took a cab every day to his workplace and every Sunday, like clockwork, he took a bus to his favourite pub. He was known in his neighbourhood and respected as a man with an intellectual disability who was making it on his own.

Then on November 29 of last year, a few weeks ago, he suffered chest pains. Wanting to live and knowing what to do, he called emergency services. The operator stayed on the phone with him as he waited for the ambulance to arrive. He collapsed and the operater listened to every sound hoping to hear his door open and help arrive. Well, she did hear everything, and what she heard astonished her.

The two ambulance attendants saw this big, fat, disabled guy, living in a messy home. They stood talking about him and decided that he wasn't worth saving. So they stood there and let him die, deciding to tell everyone that he was dead when they arrived. One more cripple out of the way, one more unnecessary life done away with. One more of us gone.

The operator immediately handed in the tape. Charges and investigations ... blah, blah, blah ...

A note of fear creeps into my life. What would ambulance attendants see if they came for me. A fat, disabled guy, in an apartment full of wheelchairs, long reachers, and grab bars. What value would my life seem if it was just my body they saw - not my connections, not my routines, not my hopes and dreams.

Sometimes there seems to me to be an immense gulf between we with disabilities and thee without - sometimes disphobia seems to be such a dark and evil prejudice.

Today, I mourn Barry Baker.

I tell his story here.

I will tell 5 other people his story.

Barry will live today, here in Toronto.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact that those who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

BARRY BAKER.

A Victim of Bigotry

i hurt someone

I hurt someone.

Quite by accident.

A misunderstanding.

It doesn't matter that I didn't mean to ...

because ...

I hurt someone.

I apologized.

And knew it wasn't enough ...

that I didn't mean to ...

that I would never...

because I did.

I hurt someone.

And I wanted forgiveness

more than I ever wanted walking.

And I wanted forgiveness

more than I ever wanted money.

And I wanted forgiveness

more than I ever wanted fame.

You see, I hurt someone.

I cried for the loss of trust ...

I cried for the loss of us ...

I cried for the loss of years ...

Because, I hurt someone.

In the mirror I want to see a kind man.

In the mirror I want to see a strong man.

In the mirror I want to see a wise man.

But in the mirror what I see disappoints me.

Forgiveness came moments ago.

Like water - no.

Like sun - no.

Like kindness undeserved.

I sit in my chair while my heart leaps

and my soul does backflips.

Forgiveness is a powerful gift.

Given by one - it's transforming.

But it needs to be given by two

For healing.

Now I have to try and find

forgiveness for myself.

But I am meaner than my friend

and cannot give it now, or take it

quite yet.

Perhaps that's why God made

tomorrow.

Blogging on Sexuality

Please consider writing a blog on sexuality on February 14th. Sexuality has been denied to people with disabilities. Bodies have been surgically altered. Urges have been chemically destroyed. Relationships have been broken up. Love has been hunted down and killed.

But it's our hearts that make us human. Our love that makes us divine.

Please consider writing a post about love, about sex, about relationships on Valentine's Day.

Notify other bloggers of the event and sign on here. A complete list of bloggers posting will be on Chewing the Fat on the 14th.

Odd Man Out

I made an enemy today. I don't know how I manage to piss people off on such a regular basis but I do. I guess I've got one of those personalities. Really, I try to be nice - actively try.

Here's what happened.

We tried to go to church today but there was so much snow around the disabled entrance (the walkies entrance was very well shovelled) that there was just no way I could manage to get into the building. We drove home and I could tell, though he wasn't saying anything, that Joe was upset. I do sometimes feel like a drag on his life. But snow is snow and a wheelchair is a wheelchair and there's not much else to be said.

So I got into the lobby of the building and ended up chatting for a few minutes with an elderly woman who was sitting on one of the couches in the lobby having a significantly difficult time with breathing. She told me that the cold air makes it hard for her to breathe. Then she was saying that she was worried about a trip next week to the eye doctor. The weather is supposed to be blisteringly cold and she can't stand out waitng for a bus, she'd stop breathing.

I mentioned to her that she should register for WheelTrans because they come right to the door and the service would be perfect for her.

"I DO NOT HAVE A DISABILITY." Her tone was harsh and her eyes ice cold.

Odd.

Now she was sitting on a couch unable to breathe, unable to get up and walk ... ok, maybe that's not a disability - and maybe I'm a pumpkin waiting for midnight.

She then went on to tell me all the things she did. Giving me evidence that she was fully functional, that she did not in fact have a disability. Well everything she said she did, I do too. And I have disability.

Oh, well, I guess some people think of disability as a demotion from full personhood.

Odd.

When I was talking with the OT about my power wheelchair, she said that most people wanted scooters because scooters allow people to think of themselves as 'other than' disabled - while a power wheelchair kind of loudly announced disability status.

Odd.

I thought that disability just meant adapting to the world in a different way, not becoming a different being.

But, then, maybe I'm odd.

A Sexual Come On ...

Master Bates & Helen the Cunning Linguist:
An Invitation To Participate

It's time to talk about sex! On the 14th of February, we the bloggers of the disability blogosphere, are called upon to write about sex - the slap and tickle, the need to bump uglies, the rabbit down the hole. It's time we came out of the closet as sexual beings. It's time for parents to talk about their hopes and fears regarding their children's sexuality. It's time for us as disabled adults to admit that we can be horn dogs, that we want our pussies pampered, that we sometimes enjoy the bumps our chairs go over.

It's ok to be crude and crass. It's ok to say big bad dirty words. It's ok to write an essay on love or an ode to onanism. Whatever strikes your fancy or flicks your bick.

You may sign on here and on the big day a list will be published for all to go visiting on the big day - it's a Saturday so you won't have to worry about your work place censor disallowing you access.

Sign on, sign up, join in. Please notify other bloggers about this day.

The Voice

We already had the tickets, so we went. Having my new power chair is exciting and I would have liked to have spent the day exploring our neighbourhood and seeing what the chair could do. But we had tickets to the opera (the live broadcast seen at a movie theatre) and, though we both enjoy them, Joe loves going. The theatre is a car ride away and there is no way that the power chair is crawling in the back of a Volkswagen Beetle, so it was into the manual and off to the theatre.

We knew that the event had sold out and the theatre manager had recommended that we get there 2 hours early to assure ourselves the opportuntity to sit together (there being only two spots where people in wheelchairs can sit with the person they came with). I brought a book and read for the first little while. The 500 seat theatre seemed impossible to fill but people streamed in and eventually we were glad of being there early. The seat next to Joe was taken early on by a woman who was approaching 200 years old. She walked with a walker, which she parked beside me, but she also had two brightly coloured canes.

She planted her purse on the seat next to her, claiming it for her husband. He arrived a bit later and then the two of them had a long discussion about what they were going to have for lunch. He wanted to go out and get it for her, she wanted to go out and get it for him, they eventually decided to go out together. They moved so slowly that a glacier would have beaten them in a sprint.

Finally the timer began to count down time for the opera to begin. The lights flickered on and off. It began. The music was luscious and beautifully melodic so I promptly slipped into sleep. Joe elbowed me whenever I approached snore-sleep. I fought for conciousness but lost the battle throughout the first two acts. At break Joe joked with me about how much I was obviously enjoying my outing and I remarked that I'd become the 'old men' I used to make fun of - the one's who slept through concerts that their wives dragged them too. Joe wasn't fond of the image.

He offered to go and get me popcorn. His reasoning was that if I was kept busy filling my face, I'd be more likely to see the third act. (I'm embarassed to tell you this worked.) As he was gone I glanced over at the elderly couple, he was leaned forward and holding her hand. He said, 'Go ahead, you want to.' She shook her head coyly. He encouraged her again.

Then ...

Very softly, not much louder than a baby's whisper, she began to sing an aria. Her voice was strong and crystal clear. She sang just for him and his eyes closed as her music entered him. Slowly people around her hushed, you could see many searching for the source of the melody. Eyes would finally settle on her, the last option. Those further away, out of hearing, continued on chatting and gossiping. But our tiny section of a large theatre was hushed and quiet. Every ear straining to hear her voice, still strong, still pure.

She finished and several people clapped in appreciation for this live performance. She flushed, he grinned proudly. Soon the final act began - and the music was magnificent - but I'd already attended the concert my heart needed to hear.

The Chair Man

I got stuck up against a wall.

I nearly threw myself to the floor.

But other than that, my first outing in the power chair went extremely well. The guy dropped it off in the early afternoon and after going through a few facts about owning a power chair (spoken far to slowly with far to many words) I climbed aboard. After making it through the door, on and off the elevator and then out of the building, I was ready to MOTOR. Just before leaving I was reminded that the roads were covered in ice and that I needed to adjust to being in the chair and the sensitive nature of the controls.

Can that baby move!

We headed towards the mall a couple blocks away, Joe trotting behind me. I had to slow down for him to keep up - and I wasn't on full power. After negotiating the narrow ramp into the mall, I was on my way. I had trouble believing that it would carry me up ramps and down aisles, but it did. After successfully navigating both the book store and the grocery store, I took on the liquor store. That's confidence!

At one point we stopped for tea and I decided to try and see if the seatbelt was long enough for me. It was and I clicked it into place. A good call because after leaving the tea shoppe I put it on full power and zoomed off. I wanted to see how fast it would go. A woman stepped out of a store, right in front of me and I had to come to a sudden stop. The chair nearly tipped over, thank heaven's I was strapped in. My heart hasn't been that fast since the first time I saw Joe.

Once on the way down a long ramp I kind of lost control and wedged up against a wall. It took a bit of time to quell the panic and then steer away from the wall. On the way home we decided to go over to Yonge Street and motor down. Because of the ice we often had to go in single file, but the times we got to be together, side by side were wonderful.

I carried the groceries, books and beer in my bag on the back of the chair, Joe didn't have to push, to carry, to steer - he got to simply walk beside me. I don't know if I have the ability to convey to you what that meant to me. To be an independant partner. To be with without depending on.

I knew the chair would give me independance.

I hadn't banked on it giving me equality.

Caution: Written While Angry

I could tell he was nervous, but I've learned not to ask. After the usual 'catching up' chat, he said, "Can I ask you something?" It's taken years for me to learn not to rush people into conversations they aren't ready to have. Breathe. Wait. It will happen, almost always.

"What's up?" I ask.

"A couple of weeks ago I was in Blockbusters in Ottawa and these two teen guys came in. Both had Down Syndrome and they looked like they could be brothers, not because they both had Down Syndrome but because they looked like each other. Anyways, they were both wearing Ottawa Senators coats, and touques, and scarves. I made a joke with them that they both must like the Sens. The older one asked me my favourite team and I told him that I was from Toronto, so I kind of had to like the Leafs." Suddenly he stopped in the story. I could tell that it was not a dramatic pause to increase tension, he was struggling to tell me what happened. What did I do? Breathe. Wait.

"Then he came over and grabbed me into a big hug and said he was sorry that I had to have the Leafs as a team. I mean, what he said was funny and all but he hugged me. I was a total stranger and he just openned his arms and hugged me. Everyone around was smiling like something wonderful was happening and I didn't know what to do. I remembered you talking about how dangerous that kind of behaviour is and now that I have a child I really worry that she not be too friendly or too outgoing. I could have been anyone. I could have been someone bad. But I just let him hug me, what should I have done?"

We ended up having a very long conversation but what struck me about this conversation was the fact that my friend, who does not work in the area of disability, does not have family members with disabilities, understood that what this young fellow did was a) wrong b) dangerous and c) wildly inappropriate and that obviously none of his care providers did. It seemed ironic that a stranger (the one who is supposed to be dangerous) wanted to know the right thing to do so that he could somehow keep this young man safe. So a stranger wants to teach safety skills ... um ... isn't that more the purview of parents, of teachers, of someone?

Its important to note that these two young menn were out and about without supervision, that means that someone, somewhere, decided that they had the skills to successfully navigate the community. Yet here was an active demonstration that at least one of them engaged in behaviour that could be misinterpreted, (what if he'd grabbed and hugged a woman, or a child) or that could lead to abuse (if he's gonna hug a stranger, he'd probably go off with him too - to have a pop or find a puppy). I shudder to think what the future holds for this guy.

Don't even think of leaving a comment saying that the world should be accepting of hugs from strangers or that we could all learn something from this young man's openness -- that's nothing but twattle and I won't have it! The world has no need of accepting boundary violations from strangers. Openness is cool but boundaries are cooler. Enough said on that score.

We have a responsibility to parent kids to live in the real world, teach people to navigate the real dangers in the community. Yes, some of the teaching is painful, some of the lessons bitter to learn, but we all did and we're all fine. I do not believe that people with disabilities are naturally trusting, I think they are often sociallized to be friendly dogs that seek out affection from everyone. Forgive me for the bluntness but I want to shock people into recognition that what we do and what we teach matters.

My friend is armed with strategies and knows now what to do should this happen again. It shouldn't have happened once, but I'll bet it happens again.

I AM

I remember it, now, very well. I was very young and an 'instructor' at a sheltered industry. At a coffee break I was sitting around with a couple other staff and we were bitching about the agency for whom we worked. 'They' didn't care about people with disabilities. 'They' had no understanding of the needs of people with disabilities. 'They' were more concerned with appearances than practices. In other words, we were having a great break.

As we sat there a young woman with a disability indicated, through non verbal means in a way unique to her, that she needed to go to the washroom. The staff whose assistance was being sought acknowledged the request but went on talking. I'm sure at that moment we all, I know I did, felt annoyed at being interupted during our break. After only a moment's pause we were back at it ... 'they' put their needs ahead of the needs of people with disabilities. Yeah that was a good one we all agreed.

I know that many of you will be tired of my yapping on and on about the WheelTrans driver who left me off in the freezing cold. But, remember, there was the story a couple days ago about the nice driver doing nice things. I need to refer to these two situations again.

Because I am still learning from them.

WheelTrans does not exist. It is an amorphous conglomeration of people - it is not a thing, it is not a person - it has no shape. Organizations are often spoken of as if they exist somehow, somewhere - but they do not. Organizations are loose federations of people - each person possessing a different face, carrying a distinct character, having a unique voice. Everyone that comes into contact with each face will see that face as the face of the organization.

In that moment that I was being dropped off in the cold, the face of the WheelTrans was that which belonged to the driver. He was WheelTrans. 'They' did not exist, he did. He was them.

In that moment where the driver was really kind to the elderly couple, the face of WheelTrans belonged to only him. He was WheelTrans. 'They' cared because 'he' cared.

As we sat, as staff, talking about 'them' we didn't realize that 'we' were 'them' to that woman who sat and waited for a basic need to be met ... waited while we bitched about an agency that didn't care. Not realizing that 'we' were 'them' to her. That the agency doesn't exist outside our actions, doesn't take form other than our form, doesn't speak other than with our voices.

At Vita, where I work, we have a pledge of support which staff say. In it we say, I am Vita, therefore Vita is me. I fully understand that now. I cannot complain about my agency when I AM my agency.

People who work in service, particularly those in direct support, often feel powerless in the organization. Yet they are often the most powerful person in the lives of those they say they serve. In that dyad, in that moment, the quality of care will be determined.

I see the look of that woman who waited to go to the washroom ... and I know now what she was thinking ...

"You don't care."

There was no 'they' involved.

A Busy Morning

On Sunday morning I did the unthinkable. I slept in. Nearing 7:30 Joe came in and asked if I was going to church. I glanced up at him through bleary eyes and told him that I wasn't up to rushing to get ready. Joe simply nodded and quietly closed the door. About 45 minutes later I padded into the front room where Joe was dressed and just finishing breakfast. A few minutes later he headed out to church.

I sat here at my desk and felt the quiet surround me. In the fresh morning sunlight I could see the occasional sparkle of ice crystalize in midair. Then I realized. I was alone. Really, completely, utterly alone.

And it felt ... delicious.

Since my disability, I am almost never alone. Joe and I are together here or I am at work there. I'm always within view of another person. I'm always just a holler away. But now I was alone. I made up a list of alone things to do.

I got the book I'm reading 'The Guernsey Literary and Potato Peel Pie Society' from the bedside table and sat on the couch and read quietly for approaching an hour. I closed the book, I was getting to close to the end and I wanted to be reading it for a few more days yet.

On the computer I logged on to my favourite mult-player wordgame and played that for a couple of rounds and then logged off. Five or ten minutes later I was done with the computer and mentally ticked that off my alone-list.

Now the big thing. I sat in the quiet and thought. At first it was hard because my thoughts became muddled with white noise and wonderings. I was out of practice at this so I really focussed and then ... I thought, deeply, for awhile. So many seek wisdom from without not pausing to seek wisdom from within. I went searching and was not disappointed, I went in search of self and found him there waiting, we had a long needed chat.

A glance at the clock told me that my time alone was almost up. I was grateful for it and grateful that it would end when a key entered the lock.

Disability and the need for assistance can rob one of moments of aloneness wherein life is uncluttered with the sounds of others. It can deprive one of the opportuntity to just be separate. I wonder when I see those with disabilities at my office, often with a staff in tow, if they ever have time on their own, if they would know what to do with that time.

A few minutes after being at home, after gossiping about church and the people he'd seen there, Joe looked at me and said, 'You seem, different.'

And I was.

Because I had had a moment, alone.

The Trip

It was dark and cold when I boarded the WheelTrans van. My wheelchair was locked into place and I was strapped into the seat at the back. The driver, a fellow I've had before, wished me a good new years and told me that we had one stop to pick up one person before we'd head up to my office. We chatted for a few seconds and then fell silent.

I actually enjoy these trips, I watch the city slip by in the quiet of the morning. I had much to think about so I occupied my time with thoughts and imaginings. We finally pulled into a driveway and the driver got out. He assisted a very elderly man across to the front passenger seat and then carefully helped him in. Behind him I saw the door open again and a woman came out locking the door behind her.

When the driver saw her he said, "Only one fare was booked." The woman explained that they were going to a medical appointment and that it was important that she go with her husband. She set herself ready to be told that she couldn't go because they hadn't booked the trip properly. Her feet were firmly planted and you could see the argument being formed in her mind.

The driver simply said, "I don't know how to make room."

There was room on the seat next to me but my wheelchair, which is quite long, was strapped down in front of it. He came to the side door to look. When he openned the door, I said, "If you fold the wheelchair footrests back, you can slide the chair in front of me and that will free up this seat."

He nodded and said, "And if I move these straps to the back, then there will be nothing obstructing the path." We set about doing these two things. In a few minutes space was made and she climbed on board. The driver got in and the man sitting beside him, obviously relieved that everything had gone smoothly, turned with tears in his eyes and said thankyou.

The driver smiled and said, "When the heart’s not small, all things are possible."

I thought of that the whole rest of the drive. We dropped the couple off, and again the driver gently helped them get from slippery pavement to clean and dry. Only a few minutes later, I was at my desk jotting down these words: When the heart’s not small, all things are possible.

They were the perfect words to begin my first day in the new year. I hope they influence me for the rest of my life.

Get Your Ick Bucket Out

Wow, this is what it's like to get up to an alarm clock. It's pretty ugly. Over the holidays I learned to do something radical - sleep in. On Sunday I didn't go to church with Joe because I slept until well after 8 o'clock. For those that know me well, this is unheard of, unthinkable. I'm the guy who's up at 4, writing by half past and done half his day's work by the time others crawl out of bed.

But I took the holidays seriously and after the rush of things to do had passed, I discovered agendaless days. Days which ran exactly as they were told to, wow. I truly got into it. Several ideas and several things I found for work projects were simply emailed the 'work Dave' as his email address and the 'vacation Dave' motored on.

But by last Wednesday, I was getting ansy. Um, I want to do something - more significant. Joe shook his head and sat me down like an errant child and told me once again the story of 'holiday' and of all the joy that 'holiday' brings. Apparently shutting up about looking forward to going back to work is not an appropriate holiday feeling.

But I rise today, lucky, I like doing what I do. I like working with the people I do. I have some grand ideas for the new year, I have old ideas that need completion. Man, I't great to have purpose at work.

I'm a lucky guy, I get to do things during the day that matter to others. And then, occassionally, I get to take a break and then do things that matter to me. Not a bad life.

Welcome 2009! We've got some things to do together, let's get started.

About Abuse, About Much More

My email has been very active, this letter arrived about Life Lessons which I'd written about what I'd learned from being left in the cold. I liked what was said and wrote to ask permission to publish it and, like Janet yesterday, Heather gave permission. (All this has given me an idea for something new to do with Chewing the Fat, if you have something you'd like to say about the disability experience but do not have your own blog please submit something to my email. I'll try to do a guest post once a month.) I thank both Janet and Heather, there is such deep honestly in both letters and they each gave me a glimpse into private lives and private thoughts. I learned from them. Please welcome Heather:

Hi Dave

Thanks so much for today's post...as always you manage to articulate the things which i kind of perceive but can't quite say but when I read what you've written I think 'Aha! I KNOW that!'

Your post struck several chords with me today...but the most significant one has been the issue of thinking that you know about something and have a good conceptual understanding of it...and then having the felt, real life experience of it...I think that you talk about understanding things in new ways...

For the past 9 months I've been in love with a man who has significant physical disabilities and requires a great deal of practical support to live the very full, active and contributing life he lives. He is a lovely man and the love of my life...it was never the script I imagined for my life but here we are...9 months down the track and for the most part we are very happy.

I have about 17 years of experience of supporting adults with intellectual disabilities and for the past 5 or so years have worked freelance as a trainer/consultant in this field...I think I know a bit about support...I think I know what good support looks like...I thought I understood something about the impact that good or bad support could have on the lives of the people being supported but until I lived with my partner and had to negotiate some of his support then I really had no idea.

All of the things you talk about are negotiated by him on a daily basis...terror and fear of reprisals...he NEEDS these guys if he's to get up out of bed in the morning or get to bed at night...if they get pissed at him he has the very real fear, not of being hit or manhandled, but of someone not doing their job carefully enough or being badly placed in his chair or having the urodome badly positioned and the tube to his legbag sticking out of the leg of his trousers...fear of lots of small discomforts and indignities...fear of people not being accommodating or flexible...but real fear nonetheless.

The notion of misplaced empathy...I won't bore you with the incident but we had a couple of care workers put an ice cube tray in the shape of a penis in our freezer in an attempt to get me to 'lighten up'...I didn't find it funny and actually felt intimidated by it (what would be next? A vibrator for Christmas?)...it created a great deal of trouble, anxiety and stress in our home...

As their employer, I wanted my partner to 'do something about it'...he didn't want to get anyone into trouble ( the fact that he had told people not to do it, that I wouldn't like it, was completely overlooked by people)...My experience as a worker and a trainer gave me all sorts of theories and ideas about what to do...but his sense of shame, worthlessness and self blame coincided with his misplaced empathy...and so he and I weathered the storm but I reckon we'll fight this particular battle again...

Not taking abuse seriously...this comes from not taking THE PERSON seriously! A number of people have had to think again about my partner in the light of our relationship. There's a load of teasing and sexual banter goes on around him (and to some extent he participates in that)...people carry out very intimate care tasks for him and so, rather than just be straight forward and matter of fact about it the culture that has grown up around him (and some of these carers have been with him for 17 years) is one of innuendo, and tease...the women dress provocatively...they share the details of their relationships with him and share gynaecological secrets with him...they bring him presents of stickers declaring "awesome lover lives here"... But when he actually had a relationship...a real grown up relationship...they didn't know what to do...

I know that I am no catch...I'm not an attractive woman... I'm fat...middle aged...dipped in the ugly pool...and with the disabled man. We have had looks ... giggles ... whispers ... embarrassment ... outright disbelief...and on one famous occasion, someone who actually gagged at the idea of us being together...being lovers and in love. We are the double whammy...disabled and fat...and it is hard for people to take our relationship seriously...to take US seriously!! It doesn't matter that he has a huge and generous heart... that his brain is the size of a planet...that he is funny and sharp and cluey about things...that he's a computer whizz and has a quirky side...they just see disabled man and fat woman...a couple of caricatures...

This happens around us, in our home and is his day to day experience of life...I'm just seeing it and like you, i'm having to revise the notes...but how do I do that? I don't want my precious and private relationship to become a training tool...but there is stuff happening that i'd like to talk about...What do I say?

But the bigger problem is that this is leading me to despair...neither he nor I are shrinking violets but this is happening to us...and for the reasons you've articulated we are silenced...for different reasons...for my partner, this is for the reasons you outlined...for me, it's because he doesn't want me to do or say anything...he'll handle it and anyway...it's not that bad... if it's happening at this level to us what's going on in other places where people can't speak up...

I feel heart broken that my lovely boy is treated like this and allows it to happen...some days I think it's all fine and things are as good as they can be. Other days I just want to get a baseball bat and beat the shit out of the last person who did not listen when he gave an instruction or who looked a look...or didn't fasten a button...or got food all over his face and didn't wipe it properly or...or...or...

I used to think that we could change the world...I'm less sure now or more overwhelmed by the task...

Anyway..this has been a bit of a ramble...

Congratulations if you've managed to read so far!!

warmest regards

Heather

Membership Has Its Privileges

Posted With Permission: An Email

Dear Dave,

I have read your blog daily for over a year now and have not left a comment, I believe this is called lurking. Several times I lectured myself to simply stop reading you because your views often upset me. You seem to have this idealized view of a disability community. I do not, or rather did not, believe such a community existed. I believed that a community of the disenfranchized was a laughable concept.

To answer the question forming in your head, no I do not have a disability, however my son does. When he was born with Down Syndrome, a fact I knew before his birth, I was determined to parent the strongest most powerful kid possible. I wanted him to have the self esteem he would need to live a fully integrated and fully assimilated life. Many years ago I had worked as an instructor in a sheltered industry and I came to believe that any system or structure that segregated or congregated those with disabilities was perpetuating the myth that disability was reason enough to separate someone from the pack.

I determined that this would not happen to my boy. I joined no support groups, recieved no special services, we went our way as a family. We fought the school for full integration and demanded that he be socialized with his peers. At first we met with brilliant success. He made friends at school and for the most part other parents were quite supportive. I held my breath each year as he advanced through the school system. I hoped and prayed that the friendships he had would last. They did not. By the time he was 16 he was completely out of the social mainstream. He never recieved invitations to parties, he never got calls from friends on the weekend. My heart raged at the injustice.

My parents, my father in particular, kept insisting that I involve my son in something like the Special Olympics so that he would have a social outlet. We had huge battles over this, I told him that organizations like the Special Olympics were outdated, they operated on the premise that people with disabilities had a social need for each other, a ridiculous idea.

This Christmas, my Dad came and brought me to the front room. I saw my son sitting alone. All his cousins and his brother were off playing with each other and he sat, like an unwrapped present, alone. I began to cry and my father held me and reassured me that he was loved and I was loved but it was time to think a little differently about how I was parenting him. I found a flyer by my bed that night, it was for a New Years dance for people with disabilities being held by a service organization.

My father and I brought my son to the dance. I'm crying right now as I write this because it was such a wonderful night. My son was immediately embraced by those hosting the dance and those attending the dance. He danced all night. By midnight he had the phone numbers of several other teens, by one he had a girlfriend. In one night he was transformed. On New Years Day he was on the phone 12 times with his girlfriend. I even found myself telling him to get off the phone, like I had with his older brother.

I've been thinking about all this over the last many hours since New Years. I think that I kept my son away from this community, and I admit it was a community event and he attended as a member of that community, because though I accepted his disability, I did not accept the disability of others. My prejudice almost kept him from experiencing a whole range of possible friendships. Without the strong encouragement of my father, my son would have spent a lonely New Years.

So on Monday I am going to be in contact with the local Down Syndrome Association, I am going to begin to think more broadly about what it means to parent a child with a disability. This letter to you is part of my new start for the year. I want to thank you for your unrelenting vision of a disability community. Even though I often scoffed at your writing and disagreed with your views, something aways drew me back to read Chewing the Fat every day. In a way I think you were getting me ready to hear what my father had to say.

I had a very Happy New Year, thank you.

Janet, mom to Cory.

Hmmmmm

I tussled with writing a blog today.

You see, nothing happened. Well, not nothing - that's impossible, but nothing much. Yesterday we stayed home and watched a DVD box set (George Gently) interspersed with naps and reading. Didn't get out of my housecoat for the entire day. Phoned a couple of friends, did a couple of puzzles, made a few notes for work.

And here I write a disability blog, I refuse to have it devolve into a personal blog (I read several personal blogs and enjoy them, my goal was to have a topic specific blog). So since I didn't leave my house. Since I didn't have an encounter or an insight. Since I didn't do anything that had me even once think about myself as a disabled person. Or a gay person. Or a fat person. I didn't relate to a world that spews negative messages to the different - so I was just the 'me inside' and the 'me outside' had little impact on the flow of the day.

So we were just settling into making breakfast and chatting about what DVD box set we are going to watch today (Dexter Season 2 interspersed with Extras Season 2) and wondering if we could get by without Joe having to go out to buy bread - when I realized something.

So, there will be a blog after all.

When I first became disabled the 'novelty' of the change had me constantly aware of how my life had changed, how I had changed, how everything was slightly different. I didn't react with depression about all this as some do, but I did have the experience of disability filling my conciousness. It seemed like my whole life had been taken over by this new fact about myself.

I think this is what others with acquired disabilities experience. A flooding of disability into conciousness, a belief that 'disability' is all there is and all there ever will be. It seems impossible that there will ever be a future wherein disability simply meshes into the background, like height and eye colour. It seems that it's impossible to go even a second without this new awareness pressing in for notice. It seems unlikely that one will ever hear music, see colours or taste vanilla again.

But, as I discovered today, the newness certainly does wear off. Of course it does. And I should know this. When we first 'came out' all those years ago, it was impossible to go for even a second or two without being gay, seeing gay, talking gay. We spent all our time with gay people, watching gay movies, reading gay books, going to gay bars. But, with time, life reasserted itself and a balance returned to 'the force'. I'm always gay, like I'm always green eyed - but there are times when I don't think about either.

And, yesterday, I didn't once think about disability. It didn't once impact my life. Sure I used my wheelchair to get around the office and the kitchen, but that's normal. Normal. Not different. Just normal. Big deal.

Disability is always my experience but my experience isn't always disability. Does that make sense?

I hope it does.

Because that's what I intend blogging about today.

Another Year Begins

Well, that didn't go as planned.

Yesterday afternoon we went over to the mall to see a movie and pick up some fixings for dinner. After the movie while Joe went to the washroom, I pushed myself over to the elevators and rode down to the level where the grocery store is and began pushing towards the store. I waited near the bottom of the elevator for Joe and then we went in to shop. I pushed myself through the store determined to give myself a real workout in my chair.

We got home and made a pasta dinner, sauce from scratch, and settled down to watch some television. We had been invited to a party in the building but it didn't start till nine. Given that I typically am in bed at 8:30 it felt kinda cool that we were keeping 'grown up' hours. I settled onto the couch comfortably snuggled under a blanket.

I woke somewhere near eleven. The televison was still on and Joe was slumped in his chair softly snoring. There is nothing so delicious as a sleep in front of the television. I wondered, for a mere second if I should wake Joe up, if we should try to make a few minutes of the party.

Then closed my eyes.

Somewhere near two Joe woke me and we made our way to bed. I'm guessing that New Year's happened, but it happened without us.

And I'm surpisingly ok with that.