Halloween To The Max

(Photograph of a wheelchair using brown dog, with a greying muzzle. His two back legs being supported by a brace and wheels. He is dressed up for Halloween as Max, the dog from How the Grinch Stole Christmas. His wheelchair has been decorated as the sleigh that the Grinch, who is sitting on bags of presents he stole from the Whos down in Whoville.)

Every year, around Halloween, I get pictures sent to me of costumes. Usually one's of people who have transformed their wheelchairs or other mobility devices into something fabulous. I like these pictures and the creativity of them.

I'm trying hard to become someone who likes this particular holiday. It helps that Ruby and Sadie love getting dressed up in costumes, it's wonderful to hear their excitement ring down the phone line. Pictures like the one above bring me more into the spirit - even though I see this picture as more political than fanciful - so I suppose I'm getting there.

When I was a young boy and Halloween took over the small town I lived in, I couldn't get into the idea of a day where people dressed up with the idea of looking frightening. As a fat, sissy, uncoordinated boy - people were frightening 365/24/7. There is a relentlessness that comes with being the bullies first choice. There is the tedious predictability that hurt will come, in some form, pretty much every day. The message, 'It gets better,' may seem potent to those of us who made it to adulthood, but it would have been weak encouragement then.

The only thing I found frightening about costumes and masks was that I sometimes couldn't tell who was in what costume. I couldn't locate, track and therefore prepare for danger. I stopped going to Halloween parties and by adulthood had dropped Halloween out of my annual 'to do' list. We like giving out candy, we like helping the kids with their costumes, we like watching children have fun. I want to, always, ensure that my past doesn't influence the present of those vulnerable to my moods and my tempers.

So I won't be wearing a costume this year. I don't have to. Who I am is frightening enough to those who despise difference. I know how this sounds, how this reads, I know there is bitterness in these words. And yet I can't help it sometimes. When I realise the enormity of what was stolen from me by bullies, the culture that created them and the systems that gave them tacit approval, I am bitter. I wanted a childhood of carefree fun, of a world were there someone took a stick and beat the H out of Halloween making something magical ... threats.

Then, after all that, I look at the picture of Max, a dog in costume. I smile at the cleverness with which his costume is created. I marvel at the love that crafted the wheelchair. But it's his face that I truly love looking at. You can tell well loved dogs, you can tell. He is well loved. He has been petted and cuddled. He may be dressed up as Max the Dog, but he's really wearing a more subtle costume, 'The Dog Who Is Loved,' and that's perhaps an even better costume to wear.

The Last Day of the Proms

Sunday had us heading to Worthing on the southern coast of England. Our reason for going there has little to do with the story I wish to tell. We found ourselves driving along the beach and looked for a parking space so that we could get out and explore a bit of the promenade. The parking garage had wonderful accessible parking but they'd blocked the elevator by chaining four shopping carts together, in an obvious attempt to keep people from bringing shopping carts into the car park. It was sheer determination that had me getting up and squeezing by the barricade, holding on to the walls for balance, as Joe folded up the chair and barely managed to get it onto the elevator. Welcome to Worthing, now buzz off!

We crossed the street and pushed up a ramp and found ourselves promenading. There was a souvenir shop that I wanted to stop at, the Lido, for postcards. The Lido has a walkway all round it, it seemed to offer a great view so we made the turn. I immediately spotted a brand spanking new scooter parked outside the men's toilet. Beside it stood a young woman who noticed me notice the scooter. She leapt into conversation, asking me if I'd ever used one. I told her of my power wheelchair pack home and of how much I miss it on days like this.

Soon she was joined by her father who climbed on to the snazzy red machine. Instantly we were talking about wheelchairs, wheelchair repairs, travelling with wheelchairs and the attitudes of those who resent wheelchairs in public spaces. Joe and the fellow's daughter weren't left out of the conversation, you don't have to use a wheelchair to be informed about what the issues are - you just have to be alert. It was a wonderfully warm few minutes on an otherwise brisk day.

We left them and continued on our way. Joe and I met on Vancouver Island and we both love the smell of the ocean. Joe said that the tang of the beach at Worthing reminded him of Qualicum Beach down island from Campbell River, up island from Victoria. And from there we were off, remembering Victoria and our university days, remembering the treks back and forth from University to home, remembering those heady days.

We made our way back to the car, back to the hotel and back to the work week. It was the perfect day to end the weekend. Promenading on the promenade, finding community out in the community, and enjoying the present and the past.

So, onwards to Liverpool. 

THE LIST

Somewhere, in the long list of things that people with disabilities shouldn't have to experience from our non-disabled counterparts, would be what happened today. I don't know if it would be near the top, or near the bottom, but it would be on the list. I think the ranking may differ from day to day and mood to mood, but the ranking is there. Here it is, you tell me where it ranks for you.

We were having lunch, an amazing cauliflower and cheddar tart. Trust me, it is way, way, better than it sounds. I had rolled out from the cashier to find my way blocked by a huge, HUGE, baby stroller. It was the HUMMER of strollers. I couldn't get passed it. The woman accompanying the stroller was holding a tiny baby in her arms. The baby looked like he would have been lost inside that thing. She'd parked it only a foot or two outside the exit at the cash register. And, when asked to move the stroller so I could get by, she refused. She was busy with the baby.

A fellow sitting at the table across the aisle from her got his family to pull their tables out of the way so I could get by. I thank him. He said it wasn't necessary to be grateful. But I was, and I said it. I still don't understand why she choose to park a giant stroller in such a way that even walking people had difficulty getting around it. The place was nearly empty.

But that's not what I'm writing about.

I went and found a table somewhere where my chair wouldn't be in the way. I do that. I think most of us do. Firstly, it's polite. Secondly, I don't want people stepping over me and into me. So, we started our tarts with a bit of tart conversation about the social skills of the woman who should have used some of the money spent on the giganto-stroller on training in social graces or at least depth perception. But then we forgot. A social nuisance is just that.

Just as a piece of tart was making its perilous journey over my shirt towards my mouth, a hand landed softly on my shoulder. I was startled, but didn't drop the tart, and turned to look. A smiling elderly face met mine and a gentle voice said, "God bless you." And in case I didn't hear it, as her hand lingered on my shoulder, she said it again, "God bless you." Then she lifted her hand joined her husband and they left the cafe.

"What does that even mean?" asked Joe,completely annoyed by what had just happened, "Really, what does that even mean?"

I told him that I get creeped out by that. I don't feel 'touched' by the hand on my shoulder, I feel 'felt' which is a much different experience. And. like him, I have no idea what is meant by that ... I mean I didn't sneeze. I didn't have any interaction with her at all. In fact I hadn't even noticed them in the cafe.

"God bless you."

I know that's she's attempting to do something nice.

But it's creepy.

And part of what makes it creepy is that, like Joe, I don't know what it means in that context. One stranger singling out another stranger for a laying on of hands and a blessing. Why? What is being said? Why is it being said?

I'm sure it would bother her, or I hope it would bother her, to know that her actions caused us both to feel kind of icky. To feel intruded upon. To feel lessened by her action. Both of us.

So, I'll take random strangers doing randomly thoughtless things over those who intend to be nice but instead leave me feeling a need to look for motive, when, I know, there is one.

6th Annual Disability Blog Carnival

I had originally planned this Blog Carnival to coincide with Joe's 60th birthday. But life and circumstances intervened and it had to be delayed. We were in a hotel with no Internet in the rooms and we were still adjusting to the new time zone. So I opted to wait a bit. My favourite joke about faith still is:  Want to know how to make God laugh? Tell him your plans. Well that's what happened here.

Penny Richards over at Disability Studies, Temple University, originated the Disability Blog Carnival and she tells me that this month it's having it's 6th anniversary. She also tells me that this is the last one for the year as there has been decreasing participation. "Six years is a good run," she says. So we have a birthday and we have an anniversary and we have an intriguing selection of blogs.

RickisMom was the first in with two blogs about her daughter's birthday. Ricki was well known to many of us disability blogger through her mom's blog. I have to tell you that when Ricki died earlier this year, it hit me hard. I'm not sure I ever expressed that clearly to RickisMom ... I didn't know how. I found the two post submitted about Ricki's birthday celebration to be quite moving. It seems only right that Ricki's life continues to be celebrated and the contribution she made to her family and the the 'blogosphere' acknowledged.

Rachel also submitted something about her son with Down Syndrome, a powerfully moving piece about celebrating moments, no matter how difficult the struggle is - looking through the pictures to see her son, in a hospital bed, with a Santa hat on is a powerful reminder of the human need to celebrate to participate in traditions. Rachel's post combines words and pictures into a moving document of the power of love and hope.

Belinda, writes of the celebration of the opening of the Maxwell and Ruth Leroy Holocaust Memorial Garden in Toronto. I had attempted to be on the committee planning this but missed every single meeting because I was away on the road so much. I was excited to hear about a memorial that would include people with disabilities and would give a place to visit, to remember and to reflect. Never again means never again. The opening ceremonies were held recently and Belinda writes about being there and about the importance of the garden and what it represents.

CapriUni presents an astonishingly powerful poem about the celebration of the 21 anniversary of the grief which followed her mother's death. A poem which documents a relationship between a woman with a disability and her mother. A poem which memorialises the passing of strength and courage and hope from one generation of women to another. Following the post are two stories which grow out of the poem and a video that must be seen. CapriUni creates for the Blog Carnival a post which approaches her content in a variety of ways. (CapriUni, I am so glad you stuck with me as I tried to figure out how to access this post.)

I also thank the anonymous commenter who wrote a note giving thanks for the fact that movies featuring disability themes and characters were being given a whole month on Turner Classics - I don't get that station but I'm glad it was done.

So the 6th annual Disability Blog Carnival has done what it was set up to do ... bring to the fore blogs that need to be read, blogs that need to be dis/covered.

A Question from the Crowd

During the training today I told a story that I've told a thousand times before. The story is aimed at getting people to think about privacy and about how we need to practice privacy. It's about being at an IPP (as they are called in those days) meeting and sitting with other professionals discussing the hygiene routines of a young woman, also present at the meeting. Before I could finish one of the people in the audience spoke up and asked why I hadn't done something then, why I hadn't spoken up. It's a great question and one that I'd never been asked before.

This story took place over 20 years ago and it was important for me to reflect back. As we all do, I have learned as I've gotten older. There are several things which are painfully obvious to me now but were completely obscure to me when I was younger. The older I get the less I know. However, the older I get the stuff I do know is somehow more important. Like - the meaning of respect. I didn't do anything then because I didn't really realise, yet, that it was wrong. I just went along on the assumption that we, as staff, had the right to do and say what we wanted to do and say and that people with disabilities who didn't go along with it were behaviour problems.

What also struck me though, and maybe really for the first time, when I answered her question. Was that I am so much more outspoken now, so much less likely to let things simply lie for two reasons. One is obvious. I'm older. I'm moving towards the kind of wonderful freedom that comes with that. But the other isn't quite so obvious, or may be obvious to all but me. I have much more power now than I did when I was a direct care staff. I hold a position of authority at work. I hold a position of a little renown in my field of endeavour. I have little fear of reprisal for holding opposing views.

I wonder if I do enough, or think enough about the voice of those who provide direct care. The voice of parents or the voice of staff are often discounted by those with more authority, those who 'know more.' I worry about the voice of people with disabilities. And I should do that. But aren't all voices necessary. Aren't all voices needed in order for there to be a chorus, for there to be harmony?

I'm glad I was asked the question.

Because I still have much to learn.

Still have much to realise.

And there's a lot more growing to do.

A Well Flavoured Life

I was in line in the grocery store behind a nice looking disabled fellow who leaned casually up against the counter, giving his arms a rest. He used arm brace crutches and I'd seen him moving around the store with great speed. He obviously shops there a lot and knows where he's going and the shortest way to get there. We'd done the 'nod' thing that sometimes happens between disabled people sharing abled space. I chose that line up, not because he was there, but because the lineup was the shortest.

We piled our stuff up behind the little barrier he had set behind his thus making it possible for us to unload. He had a small green bag that was buried amongst his other stuff. I couldn't see what it was but it had the words 'luxurious flavour' peeking out. I lifted up trying to see what it was. It's clearly not something I've seen back home in Canada. I'm a guy who likes luxurious flavour and was interested in seeing if it was something worth checking out.

I didn't want to look like I was snooping into his stuff. Which was exactly what I was doing of course. So I only glanced a few times. When the clerk picked it up to scan it, it moved so quickly that it was out my sight and into his bag before I ever found out what it was. The fellow, who had been rubbing his left arm where it had rubbed to hard against the crutch, looked over and saw me.

He smiled and said, 'We all need a little luxury in our life don't we.'

I agreed.

He swung his bags expertly and headed out of the store taking the mysterious flavour with him.

Why am I writing about this tiny little incident?

It strikes me, again and again, how the real lives of people with disabilities fly in the face of stereotype and spit in the face of pity. Yeah, he's got a disability. Yeah, he gets around on crutches. Yeah, all that's true. But he also lives a life of secret pleasures and joys. He likes luxurious flavour and likes a brief and shared moment with a stranger.

Luxurious flavour - whatever it was - in it's shiny green bag - is probably being enjoyed right now by someone who others feel sorry for - how sad is that?

Birthday!!!

We held Joe's 60th birthday dinner in the hotel restaurant. I'd suggested going to his favourite restaurant chain but he said, with the assertiveness of a man of ripe age, "I want to have a drink with dinner." Joe does not drink and drive, at all, and thus the decision was made. We would dine overlooking the car park in the restaurant just off the lobby.

Friends joined us for dinner and within seconds the laughter started to flow from the table. I am afraid we did get a bit loud, maybe even raucous, and we were a bit of a disturbance to some other diners looking for a quieter evening. Both Joe and I are usually fairly sensitive to this and are usually fairly quiet and sedate in restaurants. But it was Joe's 60th and we were up for a bit of a party.

All day greetings came in for Joe over the Internet and we received several phone calls. Ruby and Sadie sang him Happy Birthday the evening before so they could be the first to serenade him with song. Right after singing the song Ruby's voice rang out, as if she was glad to get the song out of the way so she could ask her question, "Have you met the queen yet?" She was disappointed with our answer so cheered herself up by urging her sister to sing another round of Happy Birthday.

At work, a consultation/chat day, cake was served at lunch and Happy Birthday was sung again. By the time the evening came, before his first beer, Joe had been well and truly toasted - and this was simply a prelude to him becoming well and truly toasted.

Joe reminded me later that one December we found ourselves working in New York City on my birthday and we ended up with a group of friends at dinner in a restaurant just off Times Square. Like with Joe, we simply got together with people we'd worked with, come to like, and simply had fun.

On my birthday that year, I was not yet in a wheelchair.

On Joe's this year, I am an experienced chair user.

I don't want to make a post about Joe's birthday into one about me and my disability. But it's was important enough for us to talk about so it's important enough for me to write about. My first trip after becoming disabled and just learning to navigate the world in a wheelchair was here to the United Kingdom. Now we are both well versed in what it means to travel with a disability.

We both realised, as we chatted in the room, leaving behind a restaurant echoing with laughter, that we never predicted the paths that we would travel, but that we have been fortunate. We know people all over the world, we can get together for tea, for beer, for veggie burgers with folks in various cities ... we have been privileged with these opportunities. I have been especially blessed because when I sat down in the wheelchair, Joe stood up to take on new responsibilities in our relationship and in our shared life together. Because he is the man he is, we are where we are.

I am here because he is here and he is here because I am here.

No where in all the celebrations yesterday was there time for lighting a candle. No where was there time for blowing it out and wishing. But, I guess it doesn't matter, because we were where we wanted to be and we were there together.

A Travel Quiz

I do not butt into lines. Even though, because I have a disability, I'm often offered the chance to do so, I don't. I don't mind waiting my turn. I am, after all, comfortably seated. A couple days before we were to leave for the United Kingdom, I went to the bank to pick up some Pound Sterling bank notes. There was a long line up and I did what I do, I said to the fellow standing last in line, "I'm behind you, OK?" He nodded. Then when the next person who came in and entered the windy labyrinthine line up I said, "I'm in line up behind him and in front of you, I'm just waiting here because the pathway is simply to narrow for my chair." It's all very convivial and it suits me fine.

So I sat, off to the side and began to wait. Everyone in the line heard these conversations, and besides it's boring standing in line and this provides some bloody good entertainment. But then, something odd happened. Every single person for the next 6 turns, I know this to be 6 cause I counted, offered me the opportunity to go ahead. Every single person who offered was thanked for the offer and I said, "I'll wait my turn." Then lucky number sever, turned to me and smiled, she said, "I'm going to do you a favour and not offer you a chance to go on ahead." I laughed, she did too. And then it was solidified. No one else offered and I simply took my turn when it was my turn.

I've been thinking about this whole incident recently, particularly after a few days of intensive travel. Airports, airplanes, shuttle buses, and hotels. There are so many times when people are genuinely kind, and genuinely want to help out. There are so many times when people 'permission get' before they help. But there are also so many times when people seem to really want to offer help, no matter what I say and what I do. Think of those people in line, 5 of those people who offered me a turn to go first heard me say 'no' to the person ahead of them.

What is that dynamic?

Why did they offer?

I have my ideas, I'd like to hear yours.

Pigs Don't Fly

You could have practiced on me.

Maybe you should have.

I do see you you know.

I am pushing  myself from Marks and Spenser down towards the lift. You are with your friend at a Costa Coffee outlet. Your baby is sleeping in the pram. You and your friend were laughing and joking, then I came into view.

I do see you you know.

I saw you point at me with your finger, I saw your friend turn to stare at me. I heard your remark that pigs may not fly but they obviously roll. I admit I thought it one of the more clever of the nasty jokes made at my expense. I am stung but not hurt, you can't really do that any more. But I thought of your baby.

I wondered if your baby will grow up learning that how she looks is more important that who she is. I wondered if your baby will learn the ways of cruelty and become skilled at the art of social violence. I wondered if your baby will grow to fear your disapproval. What if she's not beautiful? What if she's not thin? What if she has acne in her teens? Will she come to you? Will she fear your abandonment if she's too tall, too short, too fat, too thin, too clumsy? Forgive me, but I fear, not you and your pointing finger and your cutting humour, I fear for the future of a child with the burden to be good enough and pretty enough and smart enough to deserve your love and respect.

You could have practised on me.

You could have taken the opportunity to be the woman, the mother, that your child will need. A mother who is kind and accepting. A mother who wants her child to be happy ... not a mother who thinks that difference is deserving of public mockery. A mother who loves the child that will be and demonstrates that love by showing respect to ... me - the pig who rolls.

Blog Carnival Delay

Hi, I have very slow internet and am going to delay the Carnival til next weekend. I want to do this well. I had planned the 'celebrations' blog carnival to fall on Joe's 60th birthday - but next weekend we'll still be celebrating! So there is still time to submit.

No Internet!!

Hi there, I'm in a hotel that does not have Internet in the room and I didn't feel like going down to the lobby to write something yesterday ... right now I'm in the room I'm going to lecture in getting ready. I thought I'd let you know and, do something I don't normally do, send you to a promotional resource. A while ago I worked with Ben Drew on one small part of a larger whole - he was working on establishing on line training and has now down so. I am the instructor on the sexuality module. You can check out the resource at Open Future Learning. There is also a YouTube clip that you may want to look at to see what it's all about. One of them is me! I haven's seen it yet. Yikes you'll get to see it before me.

This is the trailer film for the sexuality module:

I will be back tomorrow with a regular blog. It's written in my mind so I want to get out. Sorry for this but I've got to go get ready.

The Briefest Encounter

OK.

That was weird.

Nice weird, but weird.

I was waiting in the lobby of our hotel for Joe to pull up front to pick me up. People were lined up at the concierge with questions and requests. It was bustling busy so I didn't notice him arrive. He waited, patiently, near the concierge desk, trying discretely to get attention. When there was a break he said quickly, "Some called for a taxi."

The concierge just shrugged his shoulders and moved his attention on to the next person. I was looking out the front window looking to see Joe drive up. Joe gets lost going around the block so I was wondering if I'd ever see him again. The cabbie noticed me and came over.

Came over.

I was sitting in my wheelchair.

I am clearly a big man.

He said, "Are you needing a lift?"

I looked at him, stunned. He misread my frozen face and said, "Sorry, I didn't mean to bother you." I came to and said, "No, no, I was just surprised."

You don't take cabs if you are in a wheelchair in Toronto. Hell, when I was still walking, cabs didn't want to pick me up because of my size! I couldn't believe that this guy came over and offered me a ride. I couldn't believe that a random cab would be accessible to a wheelchair and even if it was I couldn't believe that the driver would be willing to offer the assistance that would be necessary. It was like ...

Like ...

Like ...

Like I was simply a potential customer.

I liked it.

blog carnival

The Blog Carnival is only a couple days away - and I've only got a couple of responses to the call. I am extending the deadline until noon EST on Monday. It's the sixth anniversary and I'd like to have it go off. If I can get five I'll go ahead and publish one. The date was set to be Oct 23rd and the topic is loosely: celebrations, birthdays, anniversaries ... So, get writing and leave me a comment here.

Today's post follows, tomorrow's will publish at midnight EST.

Eyes!

Just after we went through security we saw two people sitting in those airport carts they use to shuffle people, usually but not exclusively with disabilities, around. I glanced at them because the gate was nearly half a kilometre, I know because the guy at check in told me, away. One of the carts had a step up on to it that would be impossible for me to manage, the other looked Goldilocks so I asked if I could get a ride. She nicely indicated for me to get on.

I climbed on the back, the step being a little higher than I'm comfortable with but I got into place after only a little struggle. I asked the driver, before we took off, if she could drop me off where there weren't a lot of people as I don't like being stared at when I do simple things like transfer from cart to chair. She spoke English as a second language and didn't understand my request. I tried a second time. Still she was confused, "What are you asking me?" she asked.

The other driver was listening in on the conversation and drove his cart over and spoke to her in her own language. I saw understanding hit her face, "ohohohohohOhOhOhOhOHOHOHOHOHOHOHOH" then she nodded to me and said that she would be sure to be careful. We drove along leaving Joe way in the dust. He had my wheelchair so he just happily pushed it along. He seldomly pushes an empty wheelchair and he motored along with it.

When we got to the destination, the driver pulled over to the side and behind a column, "Here," she said in an accent fragrant with spice, "this is a place where there are no violent eyes." I was stunned at the turn of phase, at the accuracy of that phrase, when Joe came along. I got out of the cart and into the chair. We thanked her and made our way quickly to the gate area.

"Violent Eyes."

A few weeks ago I was doing a workshop with people with disabilities and a young woman came to ask me if being stared at was a kind of bullying. She'd been told that it wasn't and that she should be 'thankful for' the fact that they weren't calling her names. She was kind of mad at herself because she found the staring hurtful. She wanted to be away from the constant gawking. I told her that staring was just another form of social violence and that I understood what she meant.

I so wish I had had the term 'violent eyes' to give to her. I would love her to know that her feelings are a result of their behaviour NOT her disability and NOT her weakness.

"Violent Eyes!"

It was nice being able to move, awkwardly and stiffly, from the cart to the chair in complete safety, without fear of the assault of violent eyes.

I Sh*t You Not

I shit you not.

This happened.

We were at the gate, Joe was finishing breakfast, I wandered over to the gift shop to do a bit of last minute shopping. Joe asked that I pick up the Toronto Star, his preferred paper, and I said that I'd do it. I got it first. Then I picked up a gift for our host and a magazine and I was done. I went over to the counter to pay. A woman waved me round to another register, I rolled over, then she decided that she didn't want to open it and asked me to roll back. It wasn't far but I was annoyed. Another said they could transfer the transaction from one debit machine to another, no problem, I didn't have to move.

The transaction was transferred. Because of the lighting, because I was sitting, it was difficult for me to see the numbers on the machine. I always insist on seeing what cost has been entered, there have been mistakes, so I was tipping the screen back and forth to see it. The woman approached, reached right into my space and pushed the green 'OK' button saying, "You push this button."

I was stunned. It is hard to shock me with anything regarding what people will do to people with disabilities. But I was shocked. I told her that I hadn't seen the number, she said that everything was right. I told her it so wasn't 'right'. I let her know that I was horrified by what she had done. I couldn't imagine her doing what she did to any other customer in the store - that what she did she felt she had permission to do because I had a disability and she saw me as a helpless child. She leapt on the word and said, "Yes, I was trying to help you."

"It isn't help it's humiliation and I'm disturbed you can't see the difference."

One of the other clerks came around and said, firmly as if to an errant child, "She was trying to help you." I looked at her and said, "You don't know what happened, I do. I don't need your help right now either." And then, AND THEN, she laughed at me. Right out loud laughed at me. She caught the eyes of others and they joined her rolling their eyes at the upset disabled guy.

I shit you not.

This happened.

No one got it. Something so fucking simple, No one got it. I can't imagine another person in the same situation not being outraged. I thought I was doing well to keep this from being a shouting match. I didn't shout. I didn't swear. I just kept firmly saying that what happened was wrong. And it's so clearly wrong. Unambiguously wrong. That it stuns me. It stuns me what people feel my disability gives them permission to do. To push the OK button on a sale at a store without my permission, without my request, without my knowing the amount being charged ... is simply obviously wrong.

Where was someone to say, "Hey, he's got a point."

Why were people all automatically on the side of the clerks. Is it really that much 'them and us.' Is there really a perception that typical, not exceptional but typical, respect doesn't apply to people with disabilities. She pushed the fucking OK button.

So, I voided the sale.

I rode out with the phone number of the store and I will be making a formal complaint. But that won't give me my dignity back.

I shit you not.

That happened.

The True North

Today was rushed. Really rushed. We have been getting ready because soon we'll be 'leaving on a jet plane.' I had meeting after meeting in my office and I had several things to review, approve and sign. I wanted to take off with nothing left undone at the office. I keep in touch, daily, with the office while away, but it's nice to go with all the stuff that can be done, done.

So when I was told that the engagement party was happening downstairs for two people with disabilities who receive service, I felt the pull to go, but I also felt the pull to stay. The stack of stuff hadn't seemed to get smaller no matter how long or hard I worked on it. But, finally, I decided to get out of my office wheelchair, into my travelling wheelchair and head down stairs.

I got there in time to hear the couple make speeches and thank everyone for coming. They both spoke about how much they loved each other, how they longed to be a couple, how thrilled they were to be there, publicly proclaiming their love.

It was such a simple lovely moment.

I stayed for a very little while and then made it back upstairs, I had several meetings yet to go. I had several things yet to read, respond to and take action on. I found myself rushing, more than I would have if I'd simply stayed.

But, I didn't mind rushing.

Today, Joe and I are leaving on a jet plane. But as I sat there I remarked to myself that these two are also leaving on a journey. These two have pledged to take that trip together.

I guess it's time to make room for a couple new seats at the adult table.

London! We're coming!

And you know, when those tires lift off the ground, I'll be leaving Canada, the true north, stronger and freer.

Joe Joins Up!!

I had an odd conversation with Joe today.

As background: Our doctor recommended that Joe get a blue badge for parking as Joe has increasing problems with his knees and feet. He is now often seen limping along. Joe won't park in disabled parking, even with my blue badge, if I'm not there. He says that it's improper and illegal to do so, therefore he doesn't. The doctor hearing this paused to first pick his chin off the desk and then get the pen from where it fell to the floor. Then he set about the process of getting Joe his very own blue badge.

When I got in the car today at work, there was his very own blue badge proudly displayed on the dash. I proclaimed how good it was to be a two placard family. It does actually make things a lot easier for us. Now we are both authorised to park nearer the entrance, meaning that Joe won't have to limp for quite as long as he does now.

I thought it might be interesting to write about the dual disability status that our lives share. Then I thought, this is MY BLOG about MY LIFE. I keep stuff about Joe out of it - unless it's relevant to a story and I have his prior approval. So I said:

"Hey, would you mind if I wrote about you having an only slightly visible disability on my blog?"

He looked at me as if I'd asked the strangest question, "No, of course not, why would I?"

Oh, yeah.

Joe gets it.

Disability just is.

So put another one in the census count of the disability community. We're good with it. And if you see a guy limping next to a guy rolling, that'd probably be us.

CDNBA Vote Reminder

Hi, I'm here to bother you again with a reminder that I'd appreciate your vote for a Canadian Blog Award. I am nominated in two categories, Best Health Blog and Best Personal Blog. You do not have to be Canadian to vote, so please take a moment and cast your ballot. Too, Belinda Burston, a regular comment maker here, is up for best religion and philosophy blog for Whatever He Says. So to vote just go to the Canadian Blog Awards and cast your ballot. I thank you.

Today's post follows.

My New Watch

 

Joe and I went to get our haircuts and, as is my way, I went shopping while Joe got his curly tresses shorn. He takes MUCH longer to get a hair cut than I do. He gets styled, I get mowed. So I wandered through the mall and stopped short in front of a men's jewelry counter. There in front of me was this beautiful watch. I have a perfectly good watch. I like my watch. But I LOVED the one on display.

The fellow working the counter looked over at me, appraising me in the same way as I was appraising the watch. I know what he saw. Someone, big, someone in a wheelchair, someone wearing a kind of worn out, but well loved, sweater. Someone who couldn't afford an expensive watch. He called someone else to serve me. She came around the corner, saw me and then looked over at him and said, "This guy here?" There was incredulity in her voice.

Now I know I should have thought to myself, "Frag this and frag their attitude." The fact that I stayed is a testament to how much I loved that watch. I had her get it out of the counter and hand it to me to try on. It fit with room to spare. It looked great on my wrist. I wanted it.

I asked how much it cost.

YIKES!!!

It was way more than I expected. And I expected expensive. I felt her watching my face when the figure came out. I had this incredible urge to buy the watch just to show her that I could afford it. But it was expensive. I took a breath. I didn't want to buy it to prove to a total stranger who I will never see again something about myself. I didn't want that kind of petty motivation to have me digging in my wallet. I wanted to buy the watch, if I bought it, because I really liked it.

I had to think through several things:

Joe will pee himself when he hears how much I spent on a watch just before leaving on a trip.

She thinks I can't afford it.

I really like the watch.

It's really expensive and we've got a long trip ahead of us, it's not a good use of our financial resources.

The other guy thinks I can't afford it either.

I really like the watch.

I felt like I was in a game show that existed only in my head. I pushed away Joe's shock - he knows I don't splurge on myself often. I pushed away these two strangers and their preconceptions about the size of my wallet. I pushed all that aside and realised.

I really like the watch.

"I'm going to buy this," I said. Making the decision. She looked surprised. He looked shocked. I rolled over to the till and got my debit card out. I could almost hear them holding their breath as I put in the PIN number to pay both for the watch and the 2 year warranty on it.

The word 'approved' appeared on the screen.

I have a new watch.

I bought it because I loved it.

I think.

Tom and Shane

When Joe and I first got together, within our first year, we combined our finances and decided that societal support or not, we were going to be a couple. The bank at the time refused, at first, to allow us to open a joint personal bank account. Two men were allowed a joint business account but not a joint personal account. We battled the bank, and surprisingly for the time, won. Even though the battle ended up in our being reviled as customers by those who worked at the bank, tellers didn't want to serve us, we still had our joint account and we didn't really care what others thought. This was forty three years ago and it was a much different time.

The second thing we did, after securing our bank account, was to make out wills and powers of attorney. We were university students, we had nothing, but we were leaving nothing to chance. I didn't want to end up, actually I feared ending up, in the graveyard in the town I grew up in. I wanted Joe to be the person making those decisions and so I made sure that he had the power to do so. This simply made sense to us. We lived in a time of 'unwelcome' and where people openly and publicly used anti-gay slurs and where we were very cautious about who we told. But we figured a joint bank account along with a will and a power of attorney and we were good to go. We, both of us, are thankful that we never had to test our planning.

My heart broke watching this video, I felt for Tom and Shane. While I can understand the love, I can't imagine the loss. To have to face such prejudice while dealing with grief is inexcusable.

Love.

I think, perhaps, that the human ability to politicise love is one of the worst traits of our species. The power to decry another's love, the power to deny another's love, the power to vilify another's love is a frightening power.

To have the power to determine who God will love and from whom God will take his love.

To have the power to determine who may proclaim their love and to make silent those who wish to name their love.

To have the power to create policy, to create law, to create moral codes that sanctify one's own loving while criminalising another's heart.

To have these powers is simply dangerous.

We in the disability movement know this.

We know that there are those who would deny the rights of people with intellectual disabilities to love and to marry.

We know that there are those who would deny the rights of people with physical disabilities to parent and to raise children.

We know that there are those who have once, and would love to again, turn laws into scalpels that maim and sterilise.

We, in the disability community, know.

We need to see that loving, politicised is a dangerous thing. We need to see that the most revolutionary commandment made was that we love one another. We need to see that love in the mouth of one is hatred in the ears of another.

We need, all of us, to make sure that we protect ourselves. But we need, too, all of us to join in the fight for the right for each human being to take ownership of loving, to have unimpeded access to the territories of the heart.

It's a revolutionary idea.

Which is why love is easier said than done.

3 Lines

(Description of Image: A child's drawing on a piece of lined paper. The words 'I love you' are at the top. Four people are represented in the picture, a big man in a wheelchair, a little girl with long hair, another man with a moustache and another little girl with shorter hair.)

(Click on image to see larger version.)

I was sitting in the car while Joe and Marissa were transferring stuff from our car to hers. We had said our goodbyes to Ruby and Sadie and had received big hugs. We'd all gone to a movie and had stopped for tea and treats afterwards. We wanted to chat with the kids about our upcoming trip and let them know we were going to be gone for a month. Children experience time differently than adults and we wanted to be clear that we weren't dropping out of their lives. We will be chatting with them less frequently and certainly wouldn't be seeing them for a long stretch. Ruby wanted to know exactly where we were going to be and she got really excited that our plane was going to land in the same city that the Queen lives in. "Does she know that her face is on our money?" Ruby wanted to know and we assured her that she did.

Anyways, we'd brought up some stuff from the states, including two big boxes of Hugs which the kids adore, mostly for the shape of the bottles. So, goodbyes said, I was in our car as the last of the boxes and bags were transferred to theirs. Joe came back with a drawing that Ruby had sat doing while the transfer was happening. You will have no difficulty determining which of the two adults is me, given my wheelchair and Joe's moustache, of course, and that's Ruby between us and Sadie on the other side of Joe.

Joe said that just before he left Ruby had called him over. She had drawn three lines on her pad of paper. She wanted him to write down the date we leave, the date we come back and the number of days that we will be away. She wanted to have a clear understanding of our trip and knowing when she can expect to see us again. I told him that as he was busy doing that, I was sitting staring at this little piece of note paper, The wonderful portrait of him and I and the two kids. I loved how we were united under a banner proclaiming that we are loved. I also like that my size and my wheelchair are just simply part of the picture. It reassures me somehow that Ruby doesn't normalize me in this representation. It means that she sees me, as I am, and loves me, as I am. That matters.

It mattered even more as I have spent my life working towards a day where we can all see each other, respect each other, honour each other's difference. A lifetime working towards the natural inclusion that could come if we would only have it come. Ruby gave us a gift, to remember her and her sister by, but she also gave me a glimpse of what could be - and that make me want to do, what I do and fight the fights I have to fight, even more.

We have a piece of paper now.

With three lines on it.

5 things

I was asked recently, at a conference, during a chat with someone I'd never met before, an interesting question. I get disability questions all the time. Some about how I'm coping as a person with a disability. Other, intrusive ones, about my diagnosis and my medical history. I answer the coping questions and stare down the inappropriate ones. This time though, it was a fun question, "What's the most unusual thing that's changed since you've become disabled?"

The first things that popped into my mind were about the loss of status, the loss of respect and the loss of voice. I thought, too, about the stereotypes and the assumptions which are made about my life as a disabled man. I thought, I realised, way more about attitudinal changes than physical barriers, but I thought of those too. But instantly I knew that these weren't "unusual" changes. I think that they typify the life of many people with disabilities and if I thought about it before becoming a wheelchair user, I would have predicted many of those. So, I asked permission to think about it, then write it in a blog. I've emailed Jessie saying that this post was going up today.

5 unusual things:

1) When I use cologne I spray the top of my head. I never did that before. But I figure that if anyone is helping me or leaning down to talk to me, that's the part of me that they are the closest too. I never, ever, would have predicted that.

2) I have a nearly flawless ability to look at a carpet and know it's character. Many carpets are difficult to roll on one way and easier to roll on the other. I can glance at a carpet and know if going or coming is going to be more work.

3) So visible easy to miss - people talk to each other, standing right by me, completely as if I'm not there. I can roll around a store and be seen and not considered. It's a bloggers dream. I've actually had someone say to a friend, waiting outside a store, stand beside me and say, "Good, we're alone, we can talk."

4) Most of the stuff out of reach, you don't need anyways.

5) I am very aware of poop, vomit and snot. There is a lot more poop on the street than you might think. Saturday mornings are treacherous. The number of people who shoot snot out of their noses and on to the street is vastly more than I'd first thought. I have to touch my tires, I have to roll on the street. I'm pretty good, in my manual chair, at guiding my wheels to so that I miss the offending material. but sometimes it's unavoidable. If I'm in my power chair, I try to find some grass to roll on, or I do circles before entering a building, if I'm in my manual I ensure that I push on the wheel's grab bar and not on the rubber of the tire. Poop, vomit and snot were not things I thought about before.

It was a fun thing to think about so ... readers, tell me, what's the most unusual thing that's changed since disability entered your life??

The Call

(Today's post follows - tomorrow's is coming)

Rolling Around in My Head

Is Proud To Host

The Sixth Annual Disability Blog Carnival
Happening This Month

The Topic: Anniversaries, Birthdays and Celebrations

Just write about the things you commemorate. I'd like this to be a joyous carnival - let's give the lie to the fact that we in the disability community live lives of quiet sorrow and tragedy. Let's make it clear that we are a raucous group of people who can party with the best of them. So ... 

The Date: I need submissions by October 20th and the blog will post on October 23rd. 

Leave Your submission in the Comment Section    

Stitching Voice

I've thought about publishing this story for a couple of weeks. I worried that it might offend but then thought - hey, seriously, this was a great moment and a terrific memory for me. So, all speed ahead.

I was doing an abuse prevention class for people with disabilities and one of the fellows there was an energetic and outgoing and assertive man with Down Syndrome. He added an enormous amount of energy to the workshop and he had me laughing several times. I know that some will read this as a stereotypical representation of people with Down Syndrome and I don't mean that - besides he was an assertive outgoing MAN who had Down Syndrome. I liked him.

We did a couple of role plays and it became immediately obvious that he ha no problem at all with being clear about his boundaries, using his voice with effectiveness and demonstrating incredible social skills. It's a times like these I think to myself "man, who the hell parented you, whoever they were they did a helluva job."

I think I need to be clear that I don't reserve these thoughts for people with disabilities. There is a woman at my bank who is smart, funny, engaging, helpful and has never treated me with any kind of patronisation or stigmatisation. She's kind with everyone. She's just an extremely lovely person. I thought, "wow, who the hell parented you, whoever they were they did a helluva job."

Anyways, afterwards I spoke with him and told him that I'd loved teaching him but that in fact he didn't need much teaching. I asked him how he developed such a strong voice and such clear boundaries. He said, without thinking, "My mom." I waited for him to continue but he just started laughing. Then, he said, "You know what she taught me?"

I asked.

"She told me that I was born with a hole in my heart, they stitched that up. She told me that I also had a hole in my face, that they didn't stitch up, and I was to use it if people treated me badly."

I laughed and laughed. Good for her. Good for him. He has a sense of humour about his disability AND has picked up strong messages about being his own first line of defence. Awesome.

I meet so many people with disabilities who have had 'the hole in their face stitched up' ... who don't know how to complain, how to be assertive, how to defend themselves or how to speak for themselves.

Not this guy.

This MAN.

Disability doesn't mean subservience or compliance to the mastery of others - people who are raised with voice have voice, people who are raised with pride have pride. I can't imagine what life this guy is going to live, but I do know, that it will be on his own terms and his voice will have to be considered because ... of course ... the hole in his face hasn't been stitched up. 

X Factor

Please watch the video before reading.

It's hard not to have an emotional reaction to the singer and the song. Emmanuel Kelly's story, the song he chose and the manner in which he sang it combine into a powerful viewing experience. His story, in fact, could have easily overshadowed the performance, making it difficult for the performance - his voice and his use of it - to be judged separately.

But that's the job of judges.

It is a TALENT show.

Before continuing, let me just say that I was moved to tears by the performance, I also admit to being pulled in by the master manipulation of the X-Factor team. After watching it the first time, I watched it a couple of other times, moving the video along to just the song, just the performance, and found myself equally moved. He is simply talented. He is simply a terrific performer. He simply has a wonderful voice along with the ability to use it to put meaning into the words he sings.

What I wanted to write about was the performance, not of Mr. Kelly, but of the judges. Did you notice that only one of them, Guy Sebastian, judge three, mentioned the fact that Mr. Kelly could actually sing. All the others spoke of his bravery, of his courage, of his cheeky grin. One judge said that he had them from the moment he walked on the stage. Really, that's all people with disabilities have to do? Show ourselves? Show up? Show even a modicum of ambition? Can we acknowledge that anyone who shows up to audition is showing courage, and bravery, and may even have cheeky grins - that isn't what the contest is about. It's about TALENT. And Mr. Kelly, as Mr. Sebastian thankfully pointed out, is talented.

It was such a relief to hear Mr Sebastian push the story aside and speak to the young singer about his voice and his talent and his gift. It's also interesting to note that, as talented as Mr. Kelly is, he did not make the final cut to be one of the 12 finalists. The same Mr. Sebastian cut him when he didn't do well earlier on, repeatingly forgetting lyrics to a song. There was moral outrage and the twitter world lit up at the cut.

But for me?

I'm thankful that Mr. Kelly was allowed to succeed or fail based on his talent and his performance as distinct and separate from his disability, his story and his, um, courage.

I did a little looking and found that Mr. Kelly has written some music and sings his songs with conviction. I hope he is bound for stardom, because of his drive to be a singer, and only his drive to be a singer.

Book Club Date Chosen

 

The Rolling Around in My Head book club was begun with the idea that books which explore, through fiction, the realities of people with disabilities are worth a look. The books aren't ABOUT disability, which is what makes them more interesting I think. The books chosen here are about as far from mainstream as possible - last one was Barnaby Rudge - but that doesn't matter.  The next book, like "The Secret Scripture" is set in Ireland - I assure you this is coincidence not design. Now ...

Next Book Club Choice

At Swim, Two Boys isn't an obvious choice for a Disability Book Club but I found it spoke to me both as a gay man and a man with a disability. This book has a style that is tough for me, but I'm into it now and loving the language and the ideas. Fair warning, the book has some fairly explicit sexual scenes - relatively tame if the characters were heterosexual, but still slightly scandalous in a LITERARY NOVEL when the characters aren't.

I've not set the exact date for this, as I need to coordinate this with my book reviewer, but November 19 strikes me right. (How many blogs like this one have the luxury of having it's own private book reviewer type person??)

The book may be a bit difficult to get hold of, but for those who find it and persevere this is a ripping good read.

Tomorrow's post will follow.

(for sharp eyed readers, yes, I admit, I just edited and updated the original post)

Do I Really Believe ...

I truly do see adults with intellectual disabilities as adults. I do. I do. I do. I know that sometimes society, or stereotypes, have disallowed adult experiences and thereby adulthood is more of an achievement than it is simply a stage in normal development. I have fought for the sexual rights of people with intellectual disabilities for most of my professional career. That should surely establish my credentials as a 'believer' in 'adulthood' as a 'possibility' for all people.

But every now and then, like today, I get shaken up a little. We had dropped by the liquour store to pick up a few brew, and the Airmiles points that go with them, and had just filled our cloth bag with 15 cans of beer. We buy 15 cans because that assures us of the points - and it's all about the points. Anyways, I held the bag tightly and sped down the aisle and turned right. Getting through the store is a bit of a maze and I can do it at speeds which do just that, amaze. But I had to stop short as there was a fellow grabbing a six pack of Guinness Draft.

An ordinary sight to be sure.

But.

I have never seen anyone with Down Syndrome in a liquor store buying beer. And not just beer. BEER in all caps. I've never been able to manage more than a sip of Guinness. I think I just may be a wee bit too gay for that stuff. So there he was, six pack in hand, heading up to the counter. The woman who he payed called him by name so I'm guessing he has been there more than once.

Somehow, I'm surprised by my surprise at him being there. Surprised by my surprised by what he was doing. Why should I be? It's a normal, typical, everyday thing to do. The whole idea was for people with disabilities to have the opportunity to do normal, typical, everyday things. So it shouldn't be a surprise. I mean I wasn't surprised that he was alone. I wasn't surprised that he was shopping. I wasn't surprised that he was independent. So it shouldn't be a surprise that he was picking up a six-pack.

But it was.

Here's the thing though ... it won't be next time.

RAIMH Needs Your Vote

Rolling Around in My Head is honoured to be nominated for two Canadian Blog Awards. The process requires people to vote in two rounds. The first round, up now, will determine the finalists, then there will be one more vote to determine the final winners. I ask, if you wouldn't mind, for you to drop by and vote. This blog is up for 'best personal blog' (where you vote for Dave Hingsburger) and for 'best health blog' (where you vote for Rolling Around in My Head). I'd like to also point out that Belinda Burston is up for her blog Whatever He Says in the 'best religion and philosophy' blog. You can vote by going to the Canadian Blog Awards. Please note that you do not have to be Canadian to participate.

Thanks!

With The Assist of Elephants

It's really only a few days until we fly to London and, as we'll be in the UK for exactly a month, we spent Thanksgiving Monday hunkered down in our housecoats, our books and a couple of DVD sets. We ate left overs and generally set about the task of winding down from one trip and gearing up for another.Sometimes it seems that we need to soak in "home."

For the first time I'm finding that that idea of travelling, though the work appeals to me, I like the opportunities that I have to teach and to learn, I am weary of the unpredictability of access. Our home is arranged to accommodate both our tastes and our needs. While we can both easily cope with the idea of 'non-offensive design' when it comes to travel. Art that is aimed at being there without being there, music that is played to be played not listened to, furniture that is way more function than form. We get that. So taste isn't even a consideration for travel. But, needs, are and continue to be needs.

Accessibility, though, is still, no matter the cautions taken, a crap shoot. On our last trip every single room we had was fully accessible and met our needs. Awesome. But that didn't mean that we both didn't have anxiety every single time we checked into a new hotel. Once trust is broken, it's broken. We know that the rooms booked for this trip will be booked properly, that the hotels have guaranteed that we will be able to get in the room, use the room and leave the room - all we really ask for, but that doesn't mean, always that our definition of an accessible entrance - flat, is the same as theirs - only two stairs.

I realise that this will come across as whining. I realise that it is a privilege to travel and to get to do what I do. I do realise all that. But I want to chronicle here how it is to live with a disability in a world where accessibility is not a right, where accessibility is still considered a frill and where purposeful exclusion still exists. Maybe its because I'm getting older, maybe its because I'm tired of having the experience, both, of being greeted with inaccessibility and of having to make complaint and speak to supervisors and write letters to general managers.

But, then.

I think of the people I will see. The friendly faces that will greet me. I think of the conversations I will have and the laughter I will share. I think of the growing and learning and experiencing that comes with travel. I think of Tescos and Marks and Spencer, whose websites I've already poured over looking for Christmas gifts to pick up. I think of the pubs and all the veggie fare, I think of the Wetherspoons where we are going to lunch on our first day in London.

But, then.

I force myself to remember that my view of life, and of the future, depends entirely on focus. I can choose to look forward to the problems or look forward to the memories to be made and the experiences to be had. As a person who has a tendency towards depression, I have to sometimes put my expectations on elephant's feet so that I can see over the obstacles to what's truly important.

But, then.

I find that I'm growing excited about the trip.

Thanksgiving: Beyond Bounty

It's Thanksgiving morning.

Immediately I'm thankful that, for once as I rarely do, I slept in.

We got back late last night from a week and a half on the road, as it was a holiday weekend, the border to a long time to cross and we kept seeing our arrival time as predicted by Ted, our GPS, get later and later and later. We finally parked in the parking lot of our apartment building a little before eleven o'clock. We'd been in the car for nearly eleven hours.

On our way home I thought, as I always do, about the trip. My recent travels, whether it be to consult or to train have been typified by something new. People, often my age, come to talk to me quite personally, to tell me that a training I did twenty years ago, or one of my books, or an article I wrote, had a profound effect on who they became as a service provider. These are always tremendously private moments and I can't even begin to express what they mean to me. On this trip I spoke with three people with disabilities who told me that hearing me speak, or attending on of my workshops helped them to think differently about themselves. One man told me that hearing me say that having a disability was just a different difference turned him from a man who was angry all the time into a man who wanted to make a difference. He told me that he had just registered in a leadership training course for self advocates and he had come to see me just to tell me. Joe, who gets little credit for what he does, and I both agreed afterwards that if our careers had just been for him, it was worth it.

I am thankful for the path I have trod and the opportunities that I have had.

I am thankful that people are now, as I am bald and grey, are coming to me and speaking to me about what I've done and the difference it's made.

But mostly I'm thankful that the young man, in whose shadow I walk didn't do what he had planned to do. That young man teased, bullied, harassed because he wasn't like other boys, managed to somehow find the courage and the will and the strength to get through day after day. Every morning was full of fear, every day a fresh humiliation. Gay. Different. Alone. I'm thankful too that that boy, always big, always fat, managed to get by. I remember the face of the taunting classmate, in gym, grabbing my chest so hard that his fingerprints left bruises on my 'man boobs' as all the others laughed. I remember his face, now, that boy. I remember his name. I remember that moment as being a moment where I decided that I couldn't do it any more. That I didn't want to do it any more. That there was no purpose to doing it any more.

I won't describe here, on Thanksgiving Sunday, the tortuous and pain filled evening that followed. Tears falling on to two hand prints on my chest. Falling our of anger and hate, not at him, of course not at him, but at me. The idea that it was my fault for being different was well ingrained in me. The idea that he had a right to hurt me. The idea that it was OK to slam me into lockers, OK to make pig sounds when I went by, was fully in place. No one blames the victim like the victim.

Perhaps it was the long ride, dark coming earlier, through the night. Perhaps it was the intimate conversations with others who were determined to tell me that I mattered. Perhaps it was the shock when 'then' runs into 'now' that had me thinking about Thanksgiving in a different kind of way. I normally am thankful for what I have, for being loved, for having a home, for my job and my friends. Things that I am profoundly thankful for on an ongoing and continuous basis. Thanksgiving is symbolised, almost always, by the cornucopia of plenty.

Yet, for me, today. I'm grateful that I lived past that evening of that day where ten fingerprint sized bruises were washed by my grief. I'm grateful that I put down, for the last time in my life, the idea of suicide and got up changed. It would be well over a month for those bruises to finally fade - on my chest. On the way home, in the dark, with the gentle sounds of praise for the life I lived still echoing in my heart, I checked. And, on my soul, they are gone.

 

A Rambling Saturday Morning

Right now Joe is packing around me and he is keeping his eye on this computer. I think if I look away for a second it will be packed in it's lovely green Tesco carrying case. We've been on the road now for 11 days and, after a presentation to families this morning, we will be heading home. Joe stands looking at the things we bought and the things we've brought and trying to organize them into suitcases. In a minute he will become insensate to anything that doesn't have to do with getting stuff inside other stuff. The computer is always last to be packed because, well, I have to have something to do and though my disability doesn't disallow me participation - packing is Joe's thing. He finds my 'just stuff it in there' approach, um, unsettling. I've been formally disinvited from helping.

Since we've been on the road for a while we've picked up stuff for the kids. A few things for ourselves - I found 5 cool pair of wheelchair gloves, two all season, two winter, one spring. I have hand fashions for the whole of next year. I'm ready to roll! We got some Halloween stuff ... although the Oreo cookies with the orange filling sadly didn't make it to the trip home. But, on a happier note the gummy tarantulas are still intact in their bags.

Time is creeping up and I can feel, 'aren't you done your blog yet' coming. He's got to pack the car and then we've got to do breakfast and go over the agenda for today. I don't usually work Saturdays but I don't turn down opportunities to speak to families if I can help it. We'll be heading over to the Police Academy where I've been lecturing the last few days - never have we felt our car safer in a parking lot - and I'll be joining some self advocates who are going to be presenting after I finish.

Then it's home for Thanksgiving.

Tofurky and the trimmings!

Joe is now slowly advancing on me, I think the blog is now don

A Book on Janitors

"You know what my staff told me about you?" She was laughing as she spoke. We were about to begin an session for self advocates about abuse, and rights, and voice. Several people were yet to arrive so we began chatting and laughing and generally 'forming group.' I like these informal times when we are all just 'waiting'. The group knew each other fairly well and there was a raft of hello's when someone new came into the room. We fell to chatting just about the stuff that people chat about in situations like this. I've often been asked, 'What do you talk to them about?' when I've been seen relaxing and chatting with others who have intellectual disabilities. "Um, stuff," I say. I don't tell them that sometimes we joke about non-disabled people, and I never start the joking - trust me - but sometimes we do. They ask if I ever really want to run someone over who just doesn't get it. I tell them I haven't ever done it but I often want to. Anyways ... she was beginning a conversation.

"My staff told me that the first time they saw you speak, you weren't in a wheelchair, that they thought you were the building janitor! Then you got up and they were surprised that you were a really good speaker." She laughed. I laughed. I told her that I was once introduced to a big audience in England by someone who said, "Dave has never let success go to his clothes." We laughed some more. Someone else joined in saying, "They just never get it do they?" I asked her what she meant, "They never get that you can't tell a book by it's cover," she paused, "they always say that, but the always do that."

A woman listening in to the conversation spoke up, "Yeah, when you have a disability, they see the cover and think they know the book."

And THIS was the group that I was expected to teach!!

Jennifer Livingston: Bullies Beware

I received a number of emails each sending me a video link, I  followed the links and watched this moment, which occurred on television and I'm kind of in love with the courage and forthright way that Jennifer Livingstone dealt with what happened to her. Please watch and comment.

I apologise that I'm dreadful at transcribing a video. I took from the YouTube site the small article that accompanied this video which describes it and transcribes much of what was said:

WKBT anchor Jennifer Livingston took a moment during Tuesday's morning newscast (Oct. 2, 2012) to directly address a recent email she received from a viewer complaining about her weight.

"To the person who wrote me that letter — do you think I don't know that? That your cruel words are pointing out something that I don't see?" Livingston asked in response. "You don't know me. You are not a friend of mine. You are not a part of my family. And you have admitted that you don't watch this show. So you know nothing about me but what you see on the outside. And I am much more than a number on the scale."

Livingston went on to say that October is National Bullying Month, and that she hopes her response to the email will serve to raise awareness of bullying behavior, which is "passed down from people like the man who wrote me that email."

"If you are at home and talking about the fat news lady, guess what? Your children are probably going to go to school and call someone fat," Livingston said.

Livingston thanked friends, family and colleagues, saying, "I will never be able to thank you enough for your words of support, and for taking a stand against this bully. We are better than that email. We are better than the bullies that will try to take us down."

Note to Ms. Livingston, much of what's been talked about regarding bullying has centered on sexual orientation, thank you for making this issue as big as it is - including sexual orientation, race, disability ... and even acne, your words were powerful. You are ... let me say that again YOU ARE the kind of role model that is needed. Here's to you!!

A Gift from the Butt

We left the building quickly. It was a downhill slope so Joe ran ahead as I brought my chair up to the fastest speed possible. Rain made us both want to get in the car as dry as possible. We had a long drive ahead, through what we knew would be crushing traffic, and the idea of sitting for all that time in wet clothes was not appealing. I got round to the drivers side of the car, took off the footrests and handed them to Joe and then transferred from wheelchair to car as quickly as I could.

Once in the car, Joe brought the wheelchair round to the passenger door behind the driver's seat and then folded up the chair and lifted it in. Once in I caught hold of it and help bring it in the rest of the way. Joe jumped in. He was a little wetter than I was but we'd both managed to work quickly and get out of the rain without getting soaked. We chatted for the first hour and then fell fairly quiet commenting mostly on the rain and the driving conditions. The quiet was broken several times when Joe burst into loud condemnations of other drivers, their manner and their parentage.

Our route took us out of one city and right through the downtown core or another. We crawled for a long time both of us, who will be sixty this year, thirsty but now, with the traffic, glad of the decision we both made of not having a pop or iced tea along the way. Just outside the second city the traffic began to ease, the rain began to slow down.

About five miles from our hotel, arriving much later than we thought we would. The rain had virtually stopped. We were pleased for that anyways. Joe went and checked in, I waiting in the car. The hotel is a big one with several entrance points. We always want to go in the door that makes for the shorted trip to the room. I have to push myself there, Joe's got to bring luggage, it makes sense. Joe got the chair out of the car and came over to my side. Then he did something odd, he sat down in my chair! He doesn't do that.

After I got out and in the room he said, "Did you notice me sit down in your chair?" I told him I had noticed and wondered why. He said, "Well, I opened the chair up and saw that it was still soaking wet from when we got in. I guess when I rolled it around from your side to the other side it collected a fair bit of rain." He said this as if this was enough explanation. I wasn't following, "And ...?" I asked. "And," he said, "I thought I'd get in and let my butt dry up the chair for you so you didn't get wet when you sat in it."

And, I ask you dear readers, who needs flowers?

A Last Minute, I'm Running Late, Blog

I have a sense of almost loss when I have to replace my wheelchair gloves. I wear them until a finger pops through the material ... and then go in search of another pair. Last time I bought four pairs of gloves when I found a kind I liked. I thought they would last forever. They didn't. Yesterday after work Joe and I went looking at an enormous Target store near our hotel.

The store is V --- A --- S --- T and I had to have Joe help me make some of the long distances. We went through all the menswear section looking for suspenders (or as the Brits call them 'braces' - a distinction that caused me much embarrassment once when it was pointed out that suspenders are something very different overseas) which I also needed. We couldn't find any and then decided to go look for gloves.

Just as we came out into the main aisle, a woman came along who was clearly a Target staff. Instead of rolling all over this VAST store we asked her where we could find gloves. She paused, then asked, 'What kind of gloves?' A fair question. I held up my hands, in gloves, so she could see what they were. I said, 'I used them to push my wheelchair.'

'We don't sell wheelchair gloves,' she said.

Oh.

'Well do you sell gloves that one could use to push wheelchairs,' I asked

Oh.

That they sold.

Space, the Final Frontier

Do people understand that they can be heard?

Do people understand that they live in a bigger world, much bigger world, than they can imagine?

Joe and I were leaving the hotel to go and get some groceries. I've got a stuffy nose so we decided to forgo the movie and just stay in, cook a something 'homey,' and rest. Both Joe and I enjoy having the occasional slow day thrown our way so we were both moving slowly. I read in bed for a long while. Joe puttered around doing laundry and organising suitcases. It was nice. It's been a rainy day so we waited for a break in the weather so we could head out and shop.

The opportunity came just before two.

We headed out of the room and down the long corridor by the front desk. A group of businessmen, travelling together, were checking into the hotel. They formed a longish line up. The clerk was trying to get all the rooms organised. We didn't hear what happened but we did hear one of the men respond to her with a joke about sharing a room with one bed with another of the men. He started to mince around and lisp saying that he'd be the 'lady' tonight. They all howled.

Howled.

I'm told that I don't have a sense of humour any more.

I do. But it serves the purpose of those who wish the freedom to stereotype and mock others to put the blame on me.

I'm told that I take things too personally.

I don't. But it serves the purpose of those who constantly suggest that they don't mean to be mean to make it about 'me' and 'my issues'.

But, though I do have a sense of humour and though I don't take things personally, I also believe that people have a responsibility to remember that public space is public space. That people can hear them. Does one of the clerks have a lesbian daughter? Is one of the men travelling in the troop laughing to prove that he isn't what they suspect him of being? Is the fat guy in the wheelchair being helped out the door by the man he's loved for over forty years?

I know that I will be told that I should have spoken up. That I should have done something. I may even be told that I am somehow responsible for what happened. But, here's the thing, I don't wish to constantly be taking on the world. I don't want to grow tired and bitter. I choose to choose my battles. Those who know me know I do speak up. Those who know me know that I am a letter writer, an email warrior and that I've even won a battle or two.

I shouldn't have even had to write that last paragraph.

What I should be able to do is go out of a hotel, by a group of businessmen joking about the travel, the rain, their business they were there to do ... NOT the denigration of a whole group of people.