What I Want

What I want. What I really, really want.

Is a trip without a story to tell.

What I want, is to check in, get on, get off, get car, go to hotel. All without drama. No one really likes travel. But I've found that as a disabled person I have to put up with the indignities of travel combined with the ignomy of receiving service from others. Needing help is bad enough, taking help is worse.

I've had so many good experiences but man I have had bad experiences. Right now, before getting in the car to go to the airport, all I can think of are the bad expereinces. They haunt me.

One of the guys I used to work with, a fellow with Down Syndrome, sometimes decided not to go out somewhere planned, he'd say, 'I don't feel like facing it today.' And I'd happily encourage him. How dim I was in those days. I so get it now. Some days, I just don't feel like facing the world. I can easily see how some become willing shut ins. I'm safe here in my place. I'm safe from the stares of strangers and the hostile help from those who are there to assist me.

So I hope my post tomorrow begins with, 'Nothing much happened on our trip to London ...'

Inside me there is a growing paranoia that needs to be quelled, not by medication, but by the experience of a nice trip full of nice people. I hope everyone who wears a uniform tomorrow also wears a smile. I hope that everyone charged with helping, does. I pray that every situation is dealt with kindly and the only turbulence be that which occurs in the air.

You know what I want?

I want experience to make a deposit in the trust account. I'd like to use it for moments that matter, like between me and God, not moments that don't like between me and the guy who pushes my chair at the airport - the one that thinks he's God.

Last Day

Drive, hotel, drive, hotel, drive, hotel ... this week has been a preview of what we are facing for the next four weeks in the United Kingdom. It may seem exhausting but I am looking forward to making the trip, giving the lectures and meeting the attendees. After a week where lack of mobility lead to a lack of participation, life feels fun and exciting again.

I noticed that my week in England begins on Tuesday with a session on abuse prevention for people with disabilities. A whole day of teaching people about boundaries, the power of 'no' and the surety of self. It's the perfect way to begin. A reminder of the purpose I have set for myself. Many of the self advocates who will attend will be known to me, I always look forward to seeing them, catching up with their lives.

You know when I began in service people with disabilities had lives, unchanging. They waited. In wards. In attics. In basements. They waited. To eat. To sleep. To die. There was never any news. Reports from year to year changed age, medication lists, health reports - but reflected lives without growth.

Now, as a testiment to the success of the thing called 'community living', people live lives that vary from day to day. From month the month. From year to year. They have jobs. Relationships. Children. Purpose. 'Hey Dave, guess what happened to me ...' begins a conversation with a thousand possible endings.

I intend on drinking up the air of excitment that comes with self advocate workshops and hope that it propels me, in mind and spirit, into productive training, prevocative conversations and powerful revelations. Here's to highways and hallways ... we pack tonight and fly tomorrow.

Let me remind you that some places that I stay in the UK do not have internet services so please expect some spotty posting over the next four weeks. I'll do what I can, when I can ... but the flesh may be willing but the wireless weak.

Up With Which I Will Not Put

We're busy getting ready for our trip and that means dealing with the pharmacy, getting all our meds (I'm kept alive by chemistry), and sorting that which comes from that which stays. Joe is in charge of almost all of this but I try in my little way to help. On our way to our hotel in Gravenhurst we stopped at a Shoppers Drug Mart because we realized we need to take several bottles of menthol Otrivin with us and in order to do that we had to buy several more bottles.

I can't imagine sleeping without my nightly shot of Otrivin or lecturing without a little spray. We went into the store and I wheeled myself around while Joe went in search of the miracle spray. I ended up at the top of one of the rows waiting for Joe to find the treasure. A fellow of about 23 entered the row and I noticed him, honestly, because of his gait. His knees were tucked together and he walked with quite a sway. His feet shuffled on the ground but he walked with confidence. True a little slower than the typical person, but then each step was weighted with more meaning than it is for most.

A couple came in behind him, well old enough to know how to behave, they were nearly 50. They were hurrying up and ended up behind the young man who hadn't noticed them, he was focused on getting up the aisle and over to the cash. They had to slow up a little bit. Annoyance crossed their faces, clearly they needed the several seconds that it would take to wait for him to clear the aisle. The man turned to his wife and mimed a shuffled walk, she laughed, covering her mouth almost to show that her husband was being incorrigible, hilarious but incorrigible.

I prayed.

'Don't look back.'

He didn't, he didn't see their annoyance, their mocking of him. But I'm sure he's seen it all before. I wonder if, when he struggled to learn to walk that they taught him how to balance on his feet and how to balance his personal achievement with the stares of ignorant assholes as he made his way through the world.

Step by step, we, the disabled must claim what is ours.

Push by push, we, the disabled must own our own space.

You know, just because there are assholes doesn't mean we have to constantly put up with their shit.

And an amen to that.

No Statue

Well, it was back at it yesterday. The wheelchair situation is under control, the awards ceremony is behind me, a full day awaited. We met for most of the day with a group up from PA who are interested in adopting Vita's model of Abuse Confrontation and goal of Abuse Elimination. We all spoke passionately such that hours passed with no break, only conversation, questions, answers, discussion and laughter. The time flew by and then we said our goodbyes and I headed for my desk.

I chatted with co-workers and then tried to tie up things the best that I could. I'm not back into the office for nearly 6 weeks as I'm lecturing this week throughout Southern Ontario then flying for the United Kingdom for a month of travel and lectures. It all seemed too much too fast.

And then I heard it.

A sound I love to hear.

The snack cart.

The woman pushing the cart looked in and saw me, she smiled and waved. I stopped doing what I was doing because, really, is there anything more important in the day than the snack cart. The woman is someone I've liked right since I first began working at Vita, she has one of those whiskey tenor voices that I enjoy just listening to. She always tries to sell me something new, she showed me some items and I told her that I wanted the usual. I picked up 3 packages of Dad's Oatmeal Cookies. They have a wonderful snap when you bite them and a lovely crunch when you chew them. They feel healthier than a chocolate bar, but aren't really. I always get one for Joe and one for me and one for the desk drawer.

So we chatted she and I about snacks as we dealt with change. The staff, wisely just stood in the background, even more wisely didn't try to hurry her along. I think he realized that we were both enjoying just chatting and spending a wee bit of time together. She knows I like her. I can feel that it matters to her that I care about her.

On her way out she said to her staff assistant, 'That's Dave. He's a good guy.'

Now that's an award that I can wrap both my head and my heart around.

Award

It happened just before we were to enter. I was lined up behind the other inductees into the Canadian Disability Hall of Fame waiting to enter the room. We were in the Royal York Hotel and the room was packed full of people waiting for the ceremony to start. We heard the MC announce that the 2009 inductees were about the enter the hall. Suddenly the whole room stood up and began to applaud. A chill ran down my spine.

I never expected this to happen. I never expected to enter a room full of people applauding my accomplishments. In fact I never expected to have accomplishments. I grew up with messages of failure from those in positons of power, those in the know, that I was a 'nothing' that I would amount to 'nothing' that 'everything' was beyond my grasp and 'nothing' was what I would settle with. I believed them. Of course I did. They all were adults, they had the magical power of knowing. My self concept began to embrace failure and expect disappointment. I experienced a deep sadness, and profound sense of loneliness. I sat outside that room looking at those people standing and applauding wishing, just for a moment, that I could talk to that lonely young man, the me before. Reassure him that it would be ok. More than ok.

I rode in and couldn't look at anyone in the face, because I didn't know what to do with mine. Finally I pulled into the table where I was sitting with Joe and Manuela, my two guests. Gary and Jill Taylor, two fellow inductees, along with Mrs. Healey, wife of the late inductee Jeff Healey who was with her family who were also at the table. The ceremony began with a few remarks from David Crombie a patron of the Hall of Fame followed by a few words from Lt. Gov. David Onely who arrived on his scooter. It began to feel like a really big event. For most of the weeks leading up to this, I couldn't wrap my head around my inclusion in this list, my nomination or my acceptance. I had somehow managed to turn this honour into something less. Like, if I was getting inducted, it could be all that important.

It must be the habit of those with limited sense of self, 'if I do it, it can't be exceptional' 'if I know it, it can't be important' 'if I've acheived it, it can't really matter'. That's what I'd done with this. People often congratulated me, here on the blog and in the real world, and I accepted the congratulations kind of believing that everyone had been hoodwinked into believing the impossible. Do they see UFO's too?

I was the third recipient. I was guided to the base of the ramp. I knew it would hold me because Joe and I got there early, before everyone, and I checked it out. I waited as my accomplishments were read out, my work regarding healthy sexuality and sexual rights for people with disabiliteis, my work aimed at reducing the abuse of those in care, my 'courage' and 'steadfast' committment to ideals. I couldn't even blush because it seemed, right then, that I was accepting the award on behalf of someone who was unable to attend. When indicated, I glided up the ramp and managed to take hold of the mike.

In my bag, untouched, was the speach that I wrote. I decided, only moments before not to read it out. I decided instead to simply talk. Talk of the trust we are given in care providing roles by family members. I spoke of a man's love for his daughter, his fear that she would be hurt, his impassioned plea to all who worked with her that she be safe. We are given trust. We are given an awesome responsibility to care well for those who are vulnerable to our moods, our words, our touch. I talked about the will to make changes so that all are safe. As I spoke I noticed one man, throughout my talk he slowly pushed his chair away from the able, as if wanting a better view. As I spoke about a father's trust for his daughter's safety he gently nodded. As I spoke about the systems failure to be trustworthy, tears began to fall on his face. I had to look away from him because then I knew, really deeply knew, that the work I do is important, the effort I put into my mission is valuable, and maybe, just maybe, I am too.

I rolled down off that stage not feeling like I had acheived something and now could rest. I came down thinking about what's next to be done. About how the very next day people were coming from Pennsylvania to meet with Manuela and myself about processes, practices and protocols for keeping people safe. About how the work is well under way but not done. About how my hands, which held this beautiful award, needed to place it down and let it gather dust, as I went back to work.

It Happens At One PM Today

Here is the portrait that will hang in the Canadian Disability Hall of Fame after today, and which will be on display 24 hours a day at Metro Hall as part of a permanent exhibit. I had to dig around to find a picture to send to the Hall of Fame people and have to say that the artist did a great job.



For those who cannot read the text on the bottom of the portrait, it reads:

For more than 30 years, David Hingsburger has fought to reduce the sexual victimization of people with developmental disabilities. A prolific author, lecturer and therapist, Hingsburger has campaigned fearlessly for greater awareness of the sexuality of people with disabilities while also coaching individuals with intellectual disabilities how to recognize and deal with problematic sexual behaviour. Hingsburger’s leadership and compassion have made it possible for more Canadians with disabilities to live with the dignity and respect that they deserve.

For those who would like to visit the hall of fame on line, please visit:

The Canadian Disability Hall of Fame

To read about each inductee, just click on their portrait.

I'll be back tomorrow to tell you about the day. I'm a wee to excited to write anything coherent right now.

60 Seconds

Tomorrow, Monday, I am going to be inducted into the Canadian Disability Hall of Fame. I've been given the schedule of events and it looks like it's going to be a very cool experience. I'm still a little in shock at being both nominated and accepted, I never expected to be in any kind of Hall of Fame for anything much. It's cool, too, because I'm being honoured for my work in the promoting the idea of healthy sexuality and sexual rights for people with disabilities as well as for my work in abuse prevention. As such, I'm being inducted in the Builder category. To be seen as a builder of the community to which I now claim membership is wonderfully affirming.

But here's the kicker. After being inducted I am given 1 minute to speak. That's 60 seconds. Man, that's a toughie. I've known this for several weeks of course and should have been thinking about it. But I approach problems by avoiding them for as long as I can. This works well at removing stress for a couple of weeks and then shooting it up for a couple of hours. Not healthy, not optimal, but it works for me.

So today I have but one job. I've got to write a one minute speech. I can fill a day, in fact several days, on a variety of topics, but filling one minute seems impossible. I wrote a couple of lines yesterday and read them to Joe. It took me about 5 seconds. OK, now I've got 55 more.

So if any of you have hints for what to say, I'm all ears. I'll probably still be working on this on Monday morning. AAAAAARRRRRRGGGGGG! Fear just clutched at my throat ... time to stop and get to

an extra post cause I loved this

Parking Lot with Two Bedrooms

Our apartment now looks like a wheelchair parking lot. I've got my office wheelchair, my power chair, my broken one is back and fixed, my new one is leaning up against the wall. Anyone who comes in will get the idea that herein lives a cripple very, very quickly. For me, it was the end of a difficult time. And, though I'm not focusing on it, I worry about the future.

It seems that people with disabilities don't like choices so we have others make them for us. The issue of the tires was a huge issue. Most of the new chairs, here in Canada at any rate, come with black tires only. The black rubber is supposed to be harder, more durable, last longer and roll easier. Well, I don't know about the rest of the claims but it's impossible for me to push. It just seems to stick to the floor. The gray rubber is much easier for me to push. So, that's what I ordered, that's what I wanted. When the chair came with black tires, I tried it again and sure enough it was hard to push. The delivery guy said, 'No, it's fine.' I said, 'No, it's hard to push.' He said, 'The rubber is harder, it's easier to push.' I said, 'No, it's not.' I couldn't believe that I was being contradicted about my own experience in the chair. Like if he said it often enough the chair would begin to push it's freaking self.

I was informed that the gray wheels are no longer made that all are made of the black rubber. I wasn't sure if I believed my supplier so I called AMG wheelchairs - the brand I like. I spoke to a sales guy there and was told that they no longer made the gray tires. I told him that I preferred the gray, he said, 'We only make the black.' Why they couldn't have a choice for customers, I don't know. I do know because I made some calls that a variety of institutional settings like hospitals are complaining about the black tires because they leave marks on the floor. So it isn't just me. But even if it was, shouldn't there be a choice. I'm afraid for my next wheelchair I'll have to travel to the States to get it. There seems to be more options there.

So, how did I get gray tires. I had a very old chair with gray tires, I had the company pick it up from my office to see if they would fit on the new chair. They did. So I have a new chair with old tires. No there was no reduction in price because the WHEELS on the WHEELchair are old and worn. But, I didn't expect that anyways. I had no choice. There's that pesky complaint again. I did what I had to do.

When talking with someone from the office today they made a joke about how lucky I was to have had the week at home. I didn't say anything because they weren't being mean but how do you explain that being at home instead of work is only better if it's a choice (hmmm, theme here). It isn't so much fun when it's imposed. So, I've got a new chair with old wheels, I've got an old chair with fixed wheels, I do not have a completely brand new chair - even so, I've got mobility and with mobility comes a renewed sense of freedom.

Next week is a huge week for me. It begins the run towards December with the induction ceremony on Monday, a visit from the folks from PA on Tuesday, lectures in Peterborough, Orillia and Vaughn and then on Saturday the flight to London for the beginning of our month long UK lecture tour. Having transport I can rely on is a massive relief. We both agreed that if this had to happen it happened at the perfect time.

What struck me, though, was how disabling disability is when things don't go right. How everything moves so slowly as if it didn't matter that you couldn't move at all. How hard it is for people to understand what it means to have circumstances, not health, not desire, not planning, determine what tomorrow brings. How hard it is to cope with life at the raw edge of disability.

I guess there is no perfect time.

I missed the me that I would have been last week. My sole compensation is that I'm looking forward to being the me I will be next week. If that makes any sense at all.

Joe's The (Older) Man

Happy Birthday!! Today is the beginning of a unique month long period. Today Joe becomes one year older than me. Until my birthday in December, when we become the same age again, I get to be the Boy Toy, the trophy bride. Joe bears up remarkably well with this, but then, he's older, wiser and very much more tired.

We have little planned the new wheelchair arrives between 9 and 10, I'm dreading what's coming through the door and simply hope it's usable. It ended up being such a frustrating experience, my need for grey, not black, tire rubber has ended up costing me so much money. But you've got to do what you've got to do. And what I do, in situation's like this, is pretend that everything is OK until everything is OK - then I can cry. May not seem like much of a strategy but it's incredibly successful.

Yesterday was cool because I was able to go out for tea and then grocery shopping with Joe and then send him home. Me and my power chair took off and wandered from store to store shopping for presents. I am a born shopper so I was in my element. I had to ask for help a few times but people were kindly and I managed to get what I wanted without too much frustration.

I liked being out alone, knowing that Joe was comfortably at home. I liked being able to do things for him, without needing something from him. The power chair has made it possible for me to really surprise him with the gifts I've picked up. It was nice buying something placing it into my shopping sack and smiling thinking of his reaction to the gift. This morning, later on, we'll do the gift thing. If it isn't raining, we'll go for a beer. If it's raining, I'm sure we can keep ourselves busy.

I've lived with Joe for 71.42 percent of my life - and he still has 100 percent of my heart.

Connected

Wheelchairs are sorted, Friday the new chair comes, enough of that topic.

Modern technology has eased my problem with mobility. Having a computer at home that allows me access to my office makes it such that I could be sitting at work. I miss the interaction with others, I miss the ebb and flow of people, I miss, really miss, the snack cart. But I've been able to focus on some things that need doing.

I remember working on the radio documentary Life, Death and Disability for CBC radio. Many people with disabilities I spoke to mentioned how the computers have radically changed the world for people with disabilities. How people with limited mobility can make contact with each other, establish community, earn a living, because the internet makes such miracles possible.

At the time I was years away from experiencing disability from a personal perspective. I found these comments interesting but didn't really 'get' it. I do now. I am less 'disabled' by lack of mobility than I would have been years ago. I am a better employee because of technology. I am able to fulfil my purpose and my boss's expectations at the same time. All because of a really advanced typewriter.

As time marches on, as technology and design catch up to human needs, disability becomes less and less relevant. I watched a man with a disability go, unaided, into a store, pull up to a clerk, catch her eye (which wasn't difficult), and then push a button on a machine. A voice spoke, 'Hello, I wonder if you could help me find the new DVD by Madonna?' The clerk, fascinated by the machine and the voice, started chatting with him as they walked through the aisle asking him questions about the machine, he'd have to stop and push buttons. It was obvious he'd pre-programmed some answers. It was amazing. Suddenly he was simply a customer. Like one of those cool videos where one thing morphs into another ... only he simply morphed from what she first saw to what he actually was. Very cool.

For those of you who fear one day living with a disability, let me tell you that it doesn't mean what it did only a few years ago. Lack of mobility, for me this week has been an inconvienience not a disability. How cool is that?

I'd like to, here, formally thank Vita for being and employer that honours the needs of employees with disabilities and encourage other companies to realize that contributions by people with disabilities are possible with just a little creativity and a touch of compassion.

The Leaning Tower of Me!!

I am at home.

I am supposed to be in New Orleans.

On leaving this morning to go down to catch the bus to the airport, I lifted my leg to put it on the footrest and then tragedy struck. My wheelchair began to lean to the left and then with barely a wimper, died. I was panic-struck. WheelTrans was coming to get me, I was going to meet Manuela at the airport to fly down to do a presentation at NADD, we had flights booked and pre-paid a hotel room (to get a lower rate). I saw a fun trip disappear. I saw money fly out of the window. I saw hours of trying to get myself mobile again.

Everyone was understanding. Manuela was very cool about it. Joe, whose birthday we were going to celebrate in the Big Easy, was great about it. But sometimes I feel the burden of others 'understanding' hard to bear. I simply wanted to get about getting there. But I knew it wasn't going to happen.

The wheelchair company promised me something by the afternoon but then a wrenching call told me that they were having trouble getting a chair with the kind of tires I like. I talked to someone I know here at the building and ended up with a mechanic type guy in the apartment saying, 'I think I can get this going again, can I take it with me?' He called much later, saying, 'This is a little more difficult than I thought.'

So, I got on the phone and started calling wheelchair stores. People were nice, I've even got a guy whose going to go through their warehouse to find something for me. I'm grateful but my anxiety is through the roof.

What next, I don't know. Life is sometimes incredibly difficult. I know that things will work out the way they will. But until then, I worry. Constantly.

Coat

She forgot her coat, momentarily, on her chair.

We were all having lunch in the lobby outside the lecture hall. She sometimes comes and works at our book table when I do lectures here in Southern Ontario. I don't know her well but I enjoy her company. She doesn't let her intellectual disability intrude on her personality, she knows that she's funny, and she knows that she's skilled. Awesome.

Me, though, I have to constantly fight the early training I had. The training that taught me to fix their errors, never let them think for themselves, tidy up after them. It's old school, it's inappropriate, it restricts growth and teaches dependance. I know all that. I do. Even so ... my oh my how the urge is present.

So, when she forgot her coat, momentarily, on her chair. I almost called out after her. Almost made a bit of a deal about it. Now the three of us were still sitting there. Joe and Nikki from Diverse City Press - the coat wasn't going anywhere, it wasn't in danger of being stolen, it was just simply left behind. If Nikki had left her coat, I wouldn't call after her. I'd take it to her if she didn't come back for it. I may not even notice it was left there because I'd assume it was supposed to be where she left it, that she didn't want it right now, that she'd come and get it when it when she wanted it.

Instead of saying, 'You left you coat,' I did something else.

I said NOTHING.

I let it go.

A few minutes later she came back, looked at us and said, 'I forgot my coat.' She laughed at herself and went on her way. There is a huge difference between correcting yourself and being corrected.

Whew, got that one right, but gosh it's hard to simply 'shut up'.

The Book Club Is Back!!

It's time for another book club here at Rolling Around In My Head. We've had two thus far, Thread of Grace and Zoo Station. Both wonderful books and both, by accident not design, set in the during the Second World War. The book chosen this time,The Lottery, is set in present times so will be a big change and a welcome relief to those who do not like historical fiction or tales of war.

Patrica Wood's book tells the tale of a man with a 76 point IQ, that extra point makes a huge difference to him because it means that he's not 'r@tarded'. This alone is worth discussing. The title gives away the only plot point I'm willing to mention here. The main character wins the state lottery. The book is not about the money but about what money does to those around him. Family, friends, acquaintences are very much affected by his winning.

His Grandmother taught him survival skills. She knew that the thorny issue of 'trust' was a difficult thing for him and therefore ensured that he had some rules to follow. Extremely thoughtful parenting there.

The book is not as predictable as its plot may suggest. I was taken aback by the twists and turns and found myself tensing up at a very realistic portrayal of preditors and prey.

An interesting read. It's newly released in paperback so it won't be too expensive.

Here's what happens. All you do is sign up here in the comments section. If we get 7 or more signed up, we'll go ahead and set a date for the book club. Right now I'm thinking the first week of January. That will give everyone a lot of time to get the book and get reading it. It also will time well with the book club at work. Vita has a book club and we'll be doing The Lottery in January as well.

Hop on board, the last two were wonderful, this book looks to be the same.

Our New Profile Photograph

Self Portrait of A Blogger With A Camera

A Little Good News

I have been accused, oddly for an optimist, that I focus too much on the negative in my blog. I'm constantly being told, always by non-disabled people interestingly enough, that there are more good people than there are bad people so I should write more about them. And, though I tire of people telling me what I ought to write, what I oughtn't write, what I should say, what I shouldn't say, words I can use and words I can't (when did writing a personal blog become a committee process?) ... they do have a point.

Yesterday began with breakfast with friends and then Joe and I headed downtown. There were a couple of things we wanted to pick up, a couple of things we wanted to check out, and we figured that around noon we'd go to the theatre and catch whatever is playing. For the whole day it seemed like assholes all took a day off, that maybe they were at a convention or something, and only nice people were out on the streets.

Some nice things that happened ...

1) At the movie theatre we arrived to find people sitting in the wheelchair seats. They saw us and immediately got up and apologized and found other seats. One could quibble that they shouldn't have sat in the wheelchair seats but shush, they moved without complaint.

2) I was driving directly into the path of a fellow talking intensely on the phone, he saw me and we both swerved, me to my left, him to his right, which kept us on a collision course, a couple of swerves later we managed to get it right. We both laughed, I said, 'Thanks for the dance.' He said, 'Next time remember, I like to lead.' Nice.

3) Every time, that's every time I had to try and get by a group standing and talking, someone in the group noticed and got people to move. Everyone did without complaint. It was all smiles day.

4) At breakfast there were two of us to be accommodated, one on a scooter, me in my chair. They moved the chairs and tables about, I stuck out a bit, a friend sat at the end of the table, sticking out a bit - and no one made an issue of it. We simply had breakfast, all comfortable in our seats.

5) We bought Ruby a new parka, all soft pink and Sadie a new sweat suit complete with hoodie and when we brought them up to the counter the clerk made a comment that the two little girls were lucky to be getting gifts from 'men with taste' which I think is a euphemism for 'men who are queer as a three dollar bill' but it was nice to be treated as a couple, despite gender and disability issues, and as having family.

So, all in all it was a good day dealing with nice people. So there. I do write about good things and good people. But I appreciate the prompt, it was surely a nice post to write.

An Hour Too Late

As with much of my life, I didn't understand what had happened until it was over. I should have too because I'd been set up to 'get it'. I was finishing my Christmas shopping for family on the West Coast yesterday, something I need to do because I'm in England and Scotland for the whole month of November. Driving down a steep ramp I heard a couple of women use the word 'retard'. I couldn't stop to hand out one of the words hit cards, but I also couldn't stop myself from speaking out. I called to them 'Retard is such a ugly word to say.' They glanced at me with hostility and I tried to smile gracefully back.

So, I had been reminded, prompted, that the world can be unkind and unsafe for people with developmental disabilities. Too, Manuela (my boss at Vita) and I had spent nearly 3 hours with people from another agency wanting to learn what steps we had taken, as an agency, to confront abuse and to make the valient attempt at becoming abuse free. We spoke of how people with disabilities are tricked, manipulated and abused. That people will use thier disabilities against them, about how ugly that concept is. So I should have noticed.

Heres what happened:

I stopped at a shop that had something I wanted to get for my mother. They had a variety of them but the only one I liked was the one on display. I liked the vibrancy of the red and the deepness of the black, I thought it was perfect. The fellow came out of the store and I told him that I wanted the one on display. He picked one from the rack and said 'This one is the same.' I looked at it, it had a different red, a different black and a different pattern. I said, 'No, that's not the same.' His voice became firm, 'It is exactly the same.' I said, just noticing, 'It has leopards on it, this one does not.'

He then reluctantly took down the one that I wanted. On our way out of the store he said, 'Your mind is sharp, then. It's just your body ...' I looked at him, at that point, with anger. What a thing to say. I thought, at that moment, that my blog point was going to be about his inappropriate and insensitive comment. But when I got home I realized that what he had done.

First, he had assumed that I had an intellectual as well as a physical disability. Second, he thought, because of that disability, he could trick me into buying something I didn't want. Thirdly, he tried to bully me into taking something I didn't want, expecting that I would not have the mental resolve to stand up to him. Fourthly, he was entirely comfortable with tricking, swindling, someone with an intellectual disability.

How different is 'I want this one.' 'No, you want that one.' from 'I don't want sex.' 'You do want sex.' from 'I don't want peas. 'You do want peas.' from 'Don't hit me' 'I didn't hit you.' from 'I want to buy a candy bar.' 'You want to buy me a candy bar.' .... It's all the same.

Assertion.
Self advocacy.
Speaking up.
Self esteem.

The job is big. Bigger than we may expect. If we are going to continue with the goal of community living, we'd better figure out the skills necessary for community living ... First thing I'm back at work I'm going to review our curriculums for teaching. I want to make sure that we teach people that there are people out there who run shops that see you as a victim, not as a customer.

Not Quite Yet

Well it rolled in and then, a few minutes later, it rolled out again. I don't know a lot of terminology about wheelchairs so it's difficult to explain but, let me try. It seems that there are two kinds of wheel rubber: grey rubber and black rubber. The black rubber is apparently harder, is formed so less surface touches the ground and is supposed to roll faster. This may be true for others but for me it simply isn't. For me the black rubber sticks to the floor and is way harder to push and almost impossible to turn.

As soon as I saw the chair I knew I was going to have to send it back. Even so I got in and tried it and, man, it was hard to push. The guy explained to me several times that the black rubber was an easier push but when I said that I simply couldn't take a wheelchair that required increased strength to push and had barely no 'roll' he relented and took it away.

I panicked a bit but the company called and gave me some options and are working to get me a chair that will work for me. Because this isn't a crisis, because I ensured that there was time for things to go wrong, I think it'll all be ok. It's good to plan for problems even when none are seen on the horizons.

So no new chair - yet.

Having a disability has really helped me organize my mind differently. I know that systems have flaws - prepare for things, people, timing to be just a bit off. I know that everything takes way more time than anyone says - start early, stay calm. I know that relying on others isn't always easy - try to control what you can and only give over what you absolutely have too.

And it's working for now. Let's just wait and see if there is a new chair under my butt when I land in London. Anyone want to bet?

Delivery

Today, maybe, I get my new wheelchair. There has been a confusion, on our part, about delivery but we hope to fix that up right away. I'm excited as I was at Christmastime as a youth. I know it's just a basic wheelchair. I know it holds no glamour. But it means so much. Around this time last year, my old wheelchair wore out and died. The panic I felt was incredible. It was like I'd been shot in the spine. I'd lost all real movement.

As I've written before my wheelchair is USED. It travels the world with me, it gets handled by people who don't understand it's value. It gets dropped from airplane bellies. It gets tossed from worker to worker as it's taken up the ramp to meet me. Things get jostled, banged out of place, bent in shapes unintended. So, the chair works as hard as I do.

This year we decided with a long trip ahead of us, to preempt tragedy and simply replace chairs while this one is still working. So, today, we get a new chair. Awesome. Awesome. Awesome.

But here's the cool thing. Someone else gets kind of what I'm feeling. I called to see if the chair was in and I spoke to this really nice guy. He took down the details of my name and number and said that he was sure it was in but would get back to me. So, I waited. When the call came he said, 'Just want to let you know that I checked to see if your chair was in, it's here and waiting for you,' then he chuckled, 'I swear it's looking forward to getting out of here, looks like you have an eager companion.'

I knew he was joking. But at the same time I knew that he understood that odd and beautiful relationship between man and mobility. And I knew that he respected it.

I get my chair today.

As Long As You Understand

We pulled up to a very nice house. The WheelTrans driver got out to open the side door and I watched as a brilliantly dressed elderly man and his daughter made their way out of the house down a ramp that was installed with taste. As they approached the bus and greeted the driver the young woman, in her mid-twenties, excitedly talked about her upcoming day. Her movements with the walker were stiff and jerky but she still made her way along with confidence.

Father got on the bus and assisted her with her seat belt and then wished her a good day. There was love in his voice as he spoke to her. She again started talking with excitement about the day and the special activities planned at her day programme. He smiled a genuine smile and told her that she was lucky to have a day that she could look forward to.

As he got off the bus the called the driver over to him. He looked at her dead in the eyes and said, 'I'm trusting you, you know that don't you?' The driver, taken aback, nodded her head. 'As long as you understand that you are carrying my daughter and that I am trusting you with her ...' Again, the driver nodded.

We drove in silence for the rest of the trip. The young woman was dropped off at her programme and then I made it to work. As the driver was unclipping my wheelchair she said that she was new to the job, that she'd only been driving for three weeks. I asked her how she liked the job and she said, 'It's a big job, there are a lot of responsiblities, but I like it.'

Just as she was leaving me at the door she turned and said, 'Did you hear what that man said to me?' I told her that I did. She said, 'that's how they should start our training as drivers, he gave me chills, I'm always going to remember what he said.'

'So am I,' I thought.