< 3 My Testicle and Me

The following article was published in Contemporary Sexuality, a publication of AASECT (American Association of Sexuality Educators, Counselors and Therapists) May 2013, Vol 47. No. 4. I am publishing it here with their kind permission.

A note about the following article. I could not copy their edited copy of my final draft. Their edits made it better, apologies for the uncorrected errors not found in the final copy.  Blogger refuses to let me put the symbol < right next to anything else, I've had to put a space between  it and anything else. I hope your eye simply removes that space.

Finally, thank you for those who have donated to my Movember fundraising attempt. I had aimed at ten donations and fell far short of that. I decided to go ahead and publish anyways and hope that some others would feel moved to make a small donation. Links to make a donation in a variety of countries can be found on an earlier post.

< 3 A Graphic Discussion About My Testicle

< 3

The first time I received an email with the notation < 3 on it, I was struck silent. The person sending me this is someone who thinks that “darn” is a curse word. He would never, ever, ever send a pictogram of testicles in an email. Imagine how disappointed I was to find out that < 3 represented, not testes but ‘heart.’ I desperately wanted to tell my correspondent how I first interpreted his email but, in a mammoth bout of self restraint, managed not to.

00

I have drawn probably at least a couple thousand sets of testicles in the last many years. I do a fair bit of abuse prevention training and, in one part of the training, those attending, people with intellectual disabilities, are presented with an outline of a body.  They are asked to call out the parts that need to be drawn on the figure. Now, in fact, they don’t often call out “testes”  or “testicles” … no, they use the words that we all use, most commonly, “nuts” and “balls.” There is usually a lot of laughter during this exercise. Of course we end up discussing words that are used to talk to doctors or to police and thus “nuts” morph, verbally, into “testicles.”

0

I am a man. There are many stereotypes about masculinity that I, as a gay man, don’t buy into. I don’t like sports. But some aspects of the stereotype I fit.  I do like balls – my own included. As someone who has strongly advocated for the rights of people with disabilities to be sexual I’ve always been kind of pleased to hear, “That Dave, he’s got balls man!!” Yep, I do, I’d think. Figuratively and metaphorically I < 3 my < 3.

((00))

I was standing in front of an audience of 300 somewhere in the wilds of Connecticut. I felt my leg begin to go numb, I thought it was about how I was standing, so I moved around a bit. At break I sat down to rest, I didn’t know then, that that moment would signify my transition from standing and walking to sitting and rolling. By noon, I knew something was very wrong. By two, I had to, for the first time in my career, halt my presentation before finishing and head home.

The first rest stop was alarming because I couldn’t get out of the car. Joe had to assist me. I’d hold on to him and then drag the one leg along. I knew I hadn’t had a stroke, but I knew something was wrong. We arrived home at about two in the morning. I’d convinced myself that I’d just gotten over tired, that I really needed rest. 36 hours later having fallen over in the bedroom, forgetting that I could no longer walk unassisted, we were on the way to Emergency.

They brought me a wheelchair so I could get into the building. I saw this person, then that person, all as part of the process of checking in and being assessed for what level of emergency I presented to them.  Finally, I’m changed into a gown; I’m laying on a bed in the hallway waiting for the physician to come. When he did he asked a few questions. In my answers I told him that I had a small infection on my upper thigh but it didn’t seem to be anything too serious.

He lifted my gown.

He took a good look.

He said, “Oh, my, God.”

And disappeared.

Twenty minutes later he returns and pushes me into an examination room. He isn’t alone. He is with about four other doctors. This is Sunday, these were probably all the doctors they had there that day! They look, they all look really concerned – and slightly fascinated – one said, “I’ve never seen this outside a text book.” Then they began talking about me, forgetting I could hear. It was clear that I needed surgery within the next few hours; I would not survive until morning.  They called someone, I don’t know what her position was but she must have been senior.  Could the surgeon be called in they asked her. I would die without immediate surgery. She authorized the call.

I wake from surgery.

Coming too was a relief. I’d signed a consent form  for surgery after being told that there was a “good chance” that I’d not wake. I saw Joe’s face. He looked tired. He looked worried. I asked him if everything went well. He didn’t nod his head. He glanced over to the doctor who was, by then, standing there. The doctor answered, “It went fine. You came through the surgery well.” Then, the doctor left. I saw Joe’s eyes follow the doctor, he looked shaken.

Something’s wrong.

00-0= 0

I fall back asleep. It’s a fitful sleep. I was feeling nauseous because of the anesthetic and I knew something was wrong.  I wake again and Joe is sitting beside the bed. “Tell me,” I said. He said, “They had to amputate one of your testicles. It couldn’t be saved.”

I was stunned. No one had mentioned to me anything about my testicles. The paper I signed for the surgery said nothing about amputation.  Make no mistake, I would have agreed – life with one ball is still life with one ball – but I didn’t know how or what to think, how or what to feel, how or what difference this would all make. I was completely confused and totally frightened. My body was altered, made different.

Masculinity and I have an uneasy relationship to begin with. As a boy I was chided, teased and bullied because I wasn’t “one of the boys.” I didn’t want to play ball, I didn’t want to climb trees, I didn’t want trucks for toys. I was a “Nancy boy” who “seemed normal enough.” I had to take a test at one point about my maleness and they asked questions like “Do you prefer the smell of a fresh caught fish or the smell of perfume?” Well, I think that fish are smelly, not good smelly, bad smelly, and I was at that naïve age that still thought that honesty was the best policy. The results weren’t good news for my parents … they were all surprised that I wasn’t wearing my mother’s clothes (they asked her that in front of me).

But I knew I was a man. By then I also knew that I found boys more attractive than girls and yet I liked to hang around with girls more than boys. My proof that I was a man?  < 3 plain and simple. I had balls, I was a boy, that was an easy equation to make and it’s one that gave me some comfort. Let others discuss my masculinity or my ‘maleness’ or my ‘gender identity.’ I knew that I was a man who thought other men were hot – and my self knowledge kept me sane while discussions about the fact that I thought hockey was boring swirled round me.

0                                                  -->0

Then someone threw one of my testicles in the trash.

It’s a new doctor now. An older man. He is followed around my young doctors, very young, as he comes in to see me. He’s gruff. His bedside manner isn’t for me; it’s to demonstrate to young doctors how to be imperial. He asks a couple of questions of me. I answer. He turns to leave. I ask if I can ask some questions. He looks annoyed but he stops to listen. I ask the other doctors to leave. He’s outraged. They are there to LEARN. I am now annoyed and I said, “Well, they can LEARN that patients have a right to some privacy.” They leave.

This isn’t the best way to begin the discussion. For all the times that I have drawn testicles, for all the times that I’ve taught about what they are for and what they do, for all the hours I looked at them in a mirror as a kid, I discovered there were things I didn’t know. Like – what happens when one magically disappears? So I begin and say, “When I woke up I was told that I’d had a testicle removed.”

What did I expect?

I don’t know – maybe too much. I expected to have this man to be a little sympathetic. I’d had an amputation for God’s sake. Further, I’d had my genitals disfigured, cut off, thrown away. I was feeling a little … DAMAGED. But I didn’t get sympathy. He actually said, “Yes, so?” I start to cry. I want something from him. I want reassurance. I want him to spontaneously answer all the questions that I have.

Will I still be sexual?

Will I still be able to get and stay erect?

Will I still be lovable?

Am I deeply disfigured and damaged?

I squeak out a question about my sexual abilities. He says, “What are you worried about, you’ve still got the other one.” And he walked out.

I lay in the room a long time.  My hand reaches down to touch where the surgery had happened. There are bandages upon bandages. I feel nothing, then I begin to weep as I realize that, where I’m touching, there’s nothing to feel.

-0

It’s gone.

I tried several more times with several more people to get answers.  My questions were dismissed. Worse, though, was that I was made to feel “unmanly” because I was feeling “unmanly” and that I was experiencing girlish emotions. One nurse said, “It’s not like you had a mastectomy.” I wanted to say, but didn’t, “Yes, it’s like I had a mastectomy, except, no one cared.”

And … I’m not supposed to care either.

< 3 = < 0

It’s taken a long, long time to process what happened to me at the hospital, both the amputation and the lack of care or concern for my reaction to the surgery. I wondered for the longest while why ‘I’ didn’t matter, why ‘my’ concerns were considered silly or foolish. I asked myself questions.

Was it because I am exceedingly fat – did that make me into a non-sexual, non-gendered being?

Was it because I was gay – did that make any my questions about sexuality irrelevant – I’m not going to make babies with my boyfriend anyways?

Was it my age – I was in my fifties, so who cares if an old geezer gets off?

Was it simply my gender – men don’t have feelings anyways, really, do they?

In the end, I don’t know why what happened happened. I guess I will never know. I do know, however that I was lucky to work in the area of sexuality, I knew where to get information, I knew, maybe more importantly, what questions to ask.

What I was left with, however, was a scar.

One on my body.

One on my soul.

It’s hard to completely not matter. It’s hard to look into the eyes of someone paid to care and recognize that they don’t.

At all.

It was a ball. It was thrown away. Get over it.

Well, I guess me writing this means that I did, eventually, seven years later, get over it. Up until writing this down, I’ve never spoken about the loss of a testicle or the journey that resulted because of it. I wasn’t ashamed about that tiny loss of weight, but I somehow felt unmanly talking about the fact that my feelings were hurt because my hurt wasn’t acknowledged.

Perhaps I am a ‘Nancy Boy’ after all.

And if I am, I’m good with that.

And I’m good with < 3ing my < 0.

What is Accessibility: A Quiz

Outside the window is snow, lots and lots of snow. We have been in London, Ontario, for a conference and, as Toronto was dry, we found the piles of snow to be exciting. Rah! The winter's here. That lasted for about 3.7421 seconds when I got in my chair, in the snow and tried to make it to the hotel. The frame of my wheelchair was cold, my gloves got wet when I pushed and my fingers ached from the damp frosty climate that pervaded my mittens. It's winter.

We managed the barriers and got around quite nicely, until we decided to go to the mall after work. Store after store was impassible because of the displays and the piles of product placed everywhere. Guess the Accessibility for Ontarians with Disabilities Act gets packed away at Christmastide. I did manage some shopping, one in a store that I could only get in through the door. The woman was nice, apologized (cause that make it better) but then said, "There's lots of ways of being accessible though, aren't there. Tell you what, I'll be your personal shopper, you tell me what you want and I'll bring you the selection we have.

Oh, OK, not the same as shopping in, but she's thinking of accessibility in a big picture kind of way. I told her what I wanted, she said they had only a few in stock. Off she went and came back with a selection. They had what I wanted. I chose one, she went away with my money in her hand, came back with my change, my receipt and what I'd purchased in a bag. She popped it into my wheelchair bag and I was out.

I'm confused.

Was that accessibility?

I couldn't get in.

But she made shopping possible.

I couldn't get in.

But I got what I wanted.

I couldn't get in.

But I felt like a valued customer.

Hmmmm ...

Here's where you come in ... is that accessibility?

A Close Shave

Yesterday I was busy getting ready to head down to CBC radio to record a piece for the holiday segment of the series 'The Confessional.' I was excited because I was going to be telling a story I like to tell AND it's a story that, hopefully,  will get to listeners who may have never thought about intellectual disability, institutionalization and community before. The opportunity to talk to the whole country is an awesome one. So, I was excited.

We knew that we were going to have to get down there via sidewalks and intersections because my recording time in the studio meant that if I took the subway, it would be in rush hour and I'd never get on. People are really, really, protective of their time and space during rush hour. So we had it timed to the tee. I went and got showered and then then I shaved. I chose to use my expensive shaving lather - which I use only on special occasions because it's expensive. I also decided to use the fragrance-free after shave lotion that I use, again, for special. I was pleased. I looked, at least, well groomed.

Then I got my pants and shirt on. Next were socks and black slippers. Were ready to go after we both got bundled up. I was wearing a thick black shirt, to go with my black jeans, and I used two scarves. One a hand knitted yellow scarf given to me as a gift, it provides warmth and it's a reminder of warmth. The other a big, big green scarf. I wore the yellow under my coat, the green over my coat. Layers, you dress in layers here. It was COLD. And I'm talking Canadian COLD. The wind was strong and battered at us. My gloves were working hard to keep frostbite at bay. The wind almost slipped and fell as it slid across my closely shaved and slightly moisturised face.

I had to go slow because Joe was walking and the sidewalks were slippery. He kept on insisting that I go ahead and he'd meet me there. He wanted to get me out of the cold. But I was afraid that he'd fall and break a hip so I just said no and reminded him that if he fell to grab onto me or to the chair. We tentatively made our way along. A walk that in summer would have been half an hour at most took us almost a full hour.

But we were there. We checked in and the guard called up to the production team. A lovely woman came down and greeted us and we went up. I think I saw her notice how lovely and smooth my very red cheeks were. In the studio I had a bit of trouble getting the wheelchair in place so the tech guy, a really nice man, went to get something to set the mike up for us. I took off my green scarf, my coat, my yellow scarf and piled them up. I then reached into my shirt pocket for my glasses and couldn't find my pocket.

Where had it gone?

I'd put my shirt on inside out!

Joe was with me and I realized I couldn't quickly take it off and turn it right side round because the tech guy could walk in and we were on the other side of the production room and it had a huge glass window. Anyone could walk in.

I quickly grabbed the yellow scarf and wore it, trying to cover the fact that my shirt was on backwards.

So.

That's me.

Even when I try - I end up with an inside out shirt.

I remember once meeting someone really, really, important and then realizing, afterwards that I had egg yolk forming a nipple guard on my shirt.

That's me.

But what the hell. I may have looked a little odd with my shirt the way it was but I had a helluva shave.

Charlottetown, The Cradle of Confederation, The Place of New Beginnings

We had one of those experiences that linger in your mind for a long time after. I was thinking about it last night when I went to bed and again this morning when I was up and going through emails. I guess, maybe, I need to recognize that I'm being told, by either part of my brain or part of my heart or part of my spirit to notice what happened and honour it in some way. As my blog is a kind of running diary of experiences and memories I want saved, this seems like the logical place to do it. I'm afraid, though, that it may have less meaning for you and might seem a bit mundane. Oh, well, here goes:

Joe and I were checking into the Delta hotel in Charlottetown in advance of my giving some lectures there. I had ridden up the ramp to the lobby in my power chair and Joe was chatting with the bellman about the car, the luggage and such. There was no one in the line up so I presented myself to the front desk and a woman asked if I was checking in. I said I was. She was running through the particulars of the room with me. King bed. Wheelchair accessible. Wireless Internet. All were exactly as ordered.

She then asked how many keys I wanted made for the room. This is stuff I can do paying the barest amount of attention. We've done it thousands of times. Just as the keys were being cut, Joe arrived to tell me that the car was taken care of and luggage was on it's way up. She took in Joe's presence, handed me my keys and said, "Welcome to the Delta, I hope you and your ... partner, have a wonderful stay." It looked for a second as if she didn't know the exactly right word to say but in the end chose one that was perfectly fine.

We rode up in the elevator both agreeing, "Times have changed."

We've been travelling for work for decades. There have been times when hotels have flat out refused to give us a king bed. Several times our choice was two queens (is there an irony there) or find another hotel. This confrontation was always aggressive and they were always the aggrieved party - how dare we book a hotel under false pretences. Wha??? We tried to get into a habit of just one of us checking in and getting the key, then, once done we'd go about as openly as we typically would. But try as we might we kept messing up and ending up with disapproving stares and discussions with upset managers.

As time has passed by there has been less and less of a fuss made. In the last few years, we'd be given the keys without comment, we might get glares and cold shoulders, but, forgive me, screw 'em, we don't need their approval.

But then in Charlottetown, the woman at the desk, for the first time ever in our lives, treated us as valued customers and as a couple welcome to stay at the hotel.

That's never happened before.

Never.

Ever.

We got in the room. Joe sat down on the bed. I rolled over to the desk and turned to look at him. "That was odd," I said. He agreed and said, "We've never been welcomed, together, before."

We hadn't.

It felt good, great, wonderful, like something awful had ended and something new had begun.

The Lobby: A One Act Play

The Setting and The Circumstance:

Waiting in the lobby for Joe to bring the car around. Was unable to book a bus ride to work.

The Time:

5:50 AM

The Cast of Characters:

Dave (me)

Older Gent Who is a 'Nodding Acquaintence'

The Conversation:

Me: Looks cold out there.

He: It is. Say, where's your partner?

Me: He's getting the car.

He: Not taking the bus this morning?

Me: No, I couldn't get a booking, I'll need Joe to give me a ride.

He: Do you mind if I ask you something?

Me: (guardedly) No, I don't mind?

He: Are you well?

Me: Pardon?

He: Well, I see you go off to the hospital all the time.

Me: You mean on the bus?

He: Yes.

Me: I'm not going to the hospital, I'm going to work.

He: YOU WORK?

Me: Yes, I do.

He: Like at a workshop or something?

Me: No, I'm the Director of Clinical and Educational Supports at a large service agency.

He: Oh. My. I thought ... (trails off)

Me: People assume that because ...

He: (jumping in) I know, that's what I did. I'm going to have to think differently about you.

Elevator arrives, we say goodbye.

The Upshot:

 I was a bit disturbed by the 'think differently about you.' Obviously I've been 'upgraded' in his mind. Upgraded from what I hesitate to think. I rode away in the car with Joe, after telling him about the chat, wondering at how deep ableist thinking goes. He thought he knew me because he saw me. He didn't need to speak to me - he got all his information from bias, misinformation and prejudice - he just had to see me to know me. Meeting me was something different - it shook up his world view. And he's a NICE GUY, but nice guys can have ideas that aren't so nice and maybe insidiously dangerous. Well, today I became and person, not an idea; a human being not a collection of stereotypes. The weird thing is I think I'm supposed to feel that I got promoted.

I don't.

"I'm Not the Queen": Rulebooks and Disability

There are some people who, nicely, really try to follow some rules about 'interacting with the disabled' and in so doing make a real effort to demonstrate their respect for me as a person. I appreciate that. I really do. But I've found that interactions that require a 'real effort' at the start, require 'real effort' all the way through. One of those rules, and let me state I've never seen these 'rules,' apparently is that communications should always be at eye level. Those that have been taught this, or read this somewhere, often immediately bend down or kneel down to talk with me. We are, then, eye to eye, but we are also then two people who are demonstrating the extreme effort that it takes to 'please' the needs of someone with a disability.

When this happens I always say, quietly, 'Please, just stand up.' Often, of course the other person doesn't. They splutter on about 'not minding' or 'wanting to communicate as equals.' I ask them again to 'please stand,' I thank them for their concern but insist on them resuming a standing position. It's usually then that explain that they've been told/trained/read somewhere that this is what disabled people prefer. I try to explain that there is no such thing as 'disabled people prefer.' In the same way as there is no 'women all like' or 'third born Lithuanians all like' ... there is no such thing as a 'way to talk to those with physical disabilities.' There are things you don't do - shout at us, patronize us - but the showing of respect, well, we all want different things. In fact I can imagine a disabled person reading this and howling protest because they like the effort and the eye contact. No contest, their right is to have the right kind of interaction for them.

For me. I'd prefer that, when I ask you to stand, that you stand. For me, I don't want you to get down to me, I don't want you to talk down to me - take care of that and we're good. I don't want you to make an effort to 'communicate as equals' because we are equals standing or kneeling is irrelevant to that fact. The rule book needs to begin with 'there is no rule book for communicating with someone with a disability in the same way there is no rule book for any group. the best rule to follow is the one you follow for everyone else - learn, through interactions, what works for you and the other person.' There done.

I bring this up because we went to the movies yesterday with Mike, Marissa and the kids. We hadn't seen everyone for a while and we'd picked up the kids their annual advent calenders. The ones that have chocolate treats behind each door. We love getting them for the girls because, while they love the gift, they express such extreme emotions about having to wait 'forever' for December 1st to start. And then for all those days those candies wait torturing them with anticipation. Fun!? Wow.

Anyways, we chatted in the lobby for a while waiting for the movie to start and we chatted again before we all left. Everyone knows that I prefer we all chat like a group of people chat. I don't want each of them to pop down when they speak to me and pop back up when someone else says something. I think we'd look silly. We just talk. I noticed that there was another wheelchair user who was there and who was being spoken to by someone who had 'followed the rule' and knelt down. Again, I know this is done out of an effort to demonstrate respect and inclusion, but as the fellow speaking to the wheelchair user was a bit older, it looked quite painful. I kept hearing the 'it's OK, just stand up, please stand up.' When that didn't work, I heard, 'I'm not the queen you do not need to kneel before me.' That worked, they both laughed and the older man got back up.

I don't know what these rules are or who wrote them - but I think that respect begins with a mutual determination of what's preferred and what works. I do have some rules for interacting with me - but they are just mine - an example would be, please move around, or give me time to turn around, so that I can see you when you are speaking with me. I don't like conversations that happen over my shoulder, I do like to see faces. Now, THAT'S ME, others may not care.

So, how to you interact with disabled people? I sure as hell don't know. I do know how you best interact with me, and here's the thing, you know how others best interact with you. We all, regardless of difference or disability, have preferences. One of the joys of getting to know people is learning how to be in sync with each others.

But for now - you need not kneel before me.

Putting the Mo into Vember

Movember is coming to a close in a few days and I thought I'd update you with a photograph and issue a challenge. I mentioned when I joined in on this little adventure that those who had read the article on my right testicle which was published in Contemporary Sexuality published by AASECT (American Association of Sex Educators, Counsellors and Therapists) would understand why I joined the Movember Movement. Several people have asked to read the article. Well, here's the deal. I contacted the lovely people at Contemporary Sexuality and even though I've agreed not to republish for a year, they've said for the 'cause' they would give me permission to reprint it here on the blog. In it I tell the story both of my right testicle and the day I became disabled. If ten people indicate that they will contribute, even a small amount to Momember, I'll publish it here on the blog, something I thought I'd never do ... anyways here are some places to donate - my name isn't listed anywhere, I'm just doing this on my own. Just donate to the general fund.

Movember Canada

Movember UK

Movember Ireland

Movember US

Movember Australia

Movember Germany

 So are you ready to see the MO??

Here it is:

It grew in all WHITE!! Who knew?? So it's not a stark change but it is, at least in the right light, noticeable!!

One. The Act of One.

Yesterday, something remarkable happened.

It was the end of the work day. I had worked in a huge multiplex cinema where a conference had been held for educational assistants who work in classrooms supporting students with disabilities. I spoke in Theatre 4 in the morning and Theatre 3 in the afternoon, repeating one lecture two times. When we arrived in the morning, the cinema was packed with over 700 people attending the day but it was not yet open to the public. I thought it was fun that I was playing before Hunger Games and Thor in their respective theatres. It was a good day with warm audiences.

On the way out we we entered into a crowded hallway and a packed lobby. I had to stop and use the toilet and this multiplex had a disabled loo and it was free so I went in there. I came out and Joe decided, as he's 60 and we were driving home in rush hour, that he'd better go too. I agreed to wait for him outside the door.

I sat there while hundreds of teens were flowing by me into the self same theatres I had lectured in most heading for Hunger Games but with a large number off to Thor. I, of course, sat there being all different and their eyes swung to me attracted by the opportunity my size and disability gave them to giggle, snicker and joke. Some even pointed. I don't think they think that I can see them, or if they do realize it, they don't care. I think there is an attitude that their ugly behaviour isn't as objectionable as my shape and form. Odd.

Then a small group came along, maybe five teen kids. One on which had Down Syndrome. His friends noticed me and did what all the others did. I don't know what sparked the action but one of the kids made a joke of some kind and this young man looked at them with horror at what they said. He broke from them, came over to me, patted me reassuringly on the shoulder and then walked back to his group.

He shamed them.

It was like they could suddenly see me see them. It was like that action of compassion and solidarity made the counterpoint of their behaviour look starkly ugly and cruel. The continued by me and one of them turned and gave me a shy smile and a wave. It was hard for me to do but I smiled and waved back.

I saw tears in her eyes as she turned.

I think if I had rebuffed her she could just think I was a jerk. But he had made me human, I determinedly stayed human.

I don't know where that man's decision came from. I don't know what gave him the idea and the courage to break from his group and come to me. I don't know the journey he's been on. But I do know that his integrity and his willingness to risk showing alliance to someone being targeted is exceptional.

They say it takes a village.

That may be true.

But sometimes it takes the action of just one brave person.

Selected To Silence

Apology number one: I am about to link to a video that is not close captioned and I do not have the ability to transcribe video. I am going to attempt to describe the video and it's contents in such a way that, hopefully, it doesn't matter if the reader is able to either see or hear the video. I found that there were a few words that I couldn't quite hear because of a combination of the accent and the effect of age on my hearing.

Apology number two: I am not able to do anything other than link to the video as there is no embed code along with it and I can't find it on YouTube. You'll have to click on this LINK to be taken to the page.

Request number 1: Please take a moment to watch the video.

Request number 2: Please watch it all the way to the end.

The blog finally begins.

A couple of days ago I wrote about the protest over the tee shirt that had a version of the 'r word' on it and the successful protest against it. In that post I mentioned that a 'disability advocate' showed up at the event and said that there was nothing wrong with the tee shirt in her opinion. I said what I have to say about that but I want to look at the news reporting of this incident because I think it's instructive.

1) The news commentator says that there is disagreement within the 'disability community.' This makes it clear that, no matter what divides we see, there is a general understanding that the disability community is a unified community of diversified disabilities. That's important because it means that they can grant 'spokesperson' status to someone about an issue that has no relevance to their personal experience with disabilities. It gives the media an 'easy out' when wanting to leave out the voice of those whose disabilities make them uncomfortable.

2) Several people speak and those who do are named in the clip. A parent speaks, a paralympian speaks, a Dignity for Disability MP speaks ... and all are named. Not only do these people speak, they are interviewed - selected out as important people to make comment. A man with an intellectual disability speaks, unnamed, to the paralympian and that interchange is caught on camera. He is not interviewed. He is not named. Selective listening is of course selective silencing.

3) Even though several people with intellectual disabilities are at the protest the news broadcast makes no mention of them being there at all. The voice over states that 'parents of children with a disability say ..." Even though the camera clearly shows a man with an intellectual disability giving a 'thumbs down' sign regarding the shirts, his presence and the presence of other people with disabilities is not noted, not commented on, not acknowledge in any way.

These three facts are disturbing enough but when combined they make a toxic mix. The people MOST AFFECTED by the word in question, the people who LIVE WITH the disability being disparaged, are there but not included in the discussion. This robs those with intellectual disabilities of their voice and it robs the viewers of hearing from the people who have the strongest point to make - this word hurts, it hurts deeply.

But you know what else hurts - having your voice considered irrelevant.

We need to be careful, really careful about how we advocate. I teach, in my lectures and training, that we 'support advocates to advocate' ... that's our job. Our job is to turn the mike over to the right person. A long while back Vita was approached to speak about an issue of national concern with a reporter whose writing appears in papers across the country. We did that interview but we also facilitated interviews with those with disabilities. In this case the reporter came in wanting that, it was just that he was surprised that we said, 'yes, of course.'

We all have voices.

And we all have things to say.

The parent who spoke, the Disability MP who spoke had important things to say, important perspectives to be shared - but the inclusion of the voice of someone with an intellectual disability would have added immeasurably to the discussion.

It's just that some are selected out of discussion and therefore selected in to silence.

Open?

When Ruby was a very little girl, just learning to speak. She was here at our place and was playing in the front room. She went into the kitchen and came back carrying a small orange. She sat down on the floor and considered the orange for quite some while. Finally she got up and came over to me, with the orange resting on her palm which she held out towards me.

"Open?" she asked.

There is a fellow that I chat with every now and then on Facebook. He is a man with an intellectual disability. He is incredibly shy. He came, once, to an abuse prevention class that I taught. Somehow he found me on Facebook and a couple clicks later, we're connected. He's had a pretty rough go of it. Slowly he's told me his story, one of teasing and brutal bullying. He hates the 'r word' with a passion, both for the hate that it comes wadded in but also for what accompanied it - slamming into lockers, tripping in hallways, shit being put in his gym shoes. He's had a rough, rough go.

From what I understand of his life he's let it become very, very, small. He goes out very little - he trusts no one in his environment, no one in his neighbourhood. We've talked about this and I think he likes the fact that I don't go in all jolly hockey sticks and encourage him to 'break out' of the life he's made for himself. I've just listened and, mostly, agreed. The world can be cruel and unkind to people with disabilities. He's right about that. My responsibility to him, as a Facebook contact, I believe is to listen and to support and to validate. He's never asked for my encouragement ... until yesterday.

He asked me if I've heard of a self advocate group which is local to his area. I had not so I asked him to give me a second to Google them. I did. I found them. On their site they state, clearly, that they aim to be a safe place, that bullying and teasing are not welcome. I copied that portion of their site and sent it to him. He said that he was going to think about it. Then he asked, "Do you think that I should try going?"

"Open?"

It was his first invitation to give him my opinion. I paused. Opening an orange is one thing, opening a door is another. I told him that I'd been to a lot of self advocacy groups, that I know that they really try to create safe places. Sometimes people with disabilities tease people with disabilities - a sad fact - but that I thought that since the group says that they really try to be safe, and really discourage bullying, he might want to send them an email and tell them that he wants to go but also tell them what he fears. Ask them how seriously they take being a safe place. He thought that was a good idea. I went back to their site and copied their email and sent it to him.

Later in the day he wrote that he'd contacted them and in the end he spoke on the phone with a woman from the group. They shared stories of hurt, she said that she wouldn't be president of an organization where bullying happened. "If you've been bullied, you know," she said.

He's going.

Open.

When an Advocate Fights Advocacy: Mel Leckie's Personal Protest of a Protest

My first job in Toronto was one I took in desperation. I had worked in Glendale, a small institution in Victoria and then had been hired over the phone to work at the Rideau Regional Centre, one of Canada's largest institutions. It wasn't what I'd expected from the phone interview. It wasn't a place I wanted to work. So I, almost immediately, began looking for work elsewhere. Toronto seemed to be the place to go, it was big, there would be lots of jobs there. I had an impossible time finding work with people with intellectual disabilities because of my, very short, history of working in facilities.

I ended up getting a job working in a high school with kids who had physical, but not intellectual, disabilities. While they were all integrated into the regular school for everything else, they had a segregated home room. This was because several needed extra space, adapted equipment and a large bathroom with many adaptations made to it. I provided general support to the students. I really enjoyed working with the kids there and turning many of them on to the powers of activism. I helped them start a letter writing campaign to get the playing field made accessible, I helped them plan a day to skip school and go to a rally for better transportation access for people with disabilities, I generally got them thinking about rights and respect. It was fun.

What struck me, then, though, was that some, but certainly not all, of these kids were completely prejudiced against students, and people, with intellectual disabilities. They made the excuse that others treated them like they were one of 'those' and they wanted it to be very clear that they weren't one of 'those.' I tried to get them to think of the larger disability community but they abjectly would not. To them there were two communities. A valued one - with people with physical disabilities and a devalued one - with people with intellectual disabilities. They saw no connection, they saw the issues as entirely different, and they didn't want to talk any more about it.

That bothered me then and it bothers me now. I know that there isn't, at least not that I've seen, any formal unity between the two groups. It goes both ways, I see organisations that serve people with intellectual disabilities not give a second thought to the issues of accessibility, and I've met people with intellectual disabilities who think that they don't have a real disability like those who use wheelchairs do.

I remember watching the movie "Murderball" and it's wonderful until one of the players makes a really, damning, prejudicial remark against people with intellectual disabilities. I was surprised he'd said it, I was surprised it wasn't edited out - clearly no one saw a problem with it. WE ARE NOT THEM - that was the message loud and clear.

Similarly, when I read about the success of the recent campaign about the Globalize shirts that had a version of the 'r word' on it, I saw that a paralympian, Mel Leckie, showed up at the rally against the use of the word on a tee shirt, wearing the shirt. She said, stunningly, that it was just like a tee shirt with the words 'dickhead' or 'idiot' ... which means that she understands that the word is a pejorative and she sees no problem with it. What's even more shocking is that Ms Leckie is referred to as a DISABILITY ADVOCATE.

Clearly she advocates for ... as she defines it ... the valued end of the disability continuum. In all of this, the recent successful campaign against the lipstick sold by Sephora and now the, equally successful, campaign against the selling of these tee shirts, this traitorous act by Ms Leckie bothers me most. She clearly went there to make the statement - "My voice counts. My opinion counts. Your's doesn't." The article says, despairingly, that she wasn't alone in her attitude, that others with physical disabilities were quickly buying the shirts. Now this is what a spokesperson said and we have no proof that this happened - but the sad thing is that it could have.

Ms Leckie, if there be but six degrees of separation and you somehow come to read this, I challenge you to actually become what you say you are a 'disability advocate'. I challenge you to broaden your definition of disability to be an inclusive one (an odd request I know) and actually meet some people with intellectual disabilities, speak with some family members, challenge yourself to grow. Just because you have a disability yourself doesn't mean that you are automatically well informed about the community as a whole.

Me, I'm a guy with a physical disability who provides support to those who have intellectual disabilities. I am part of their community, they are part of mine, of course - because there is only one community. That's something I think that you will find enriches all of us.

Princess Dave

We had just gotten off the elevator and were about to go out into the cold when Joe noticed that one of my black slippers had slipped off my foot and was dangling precariously off the footrest. We backed up and found a place, right across from the elevators, where Joe could sit down and then adjust the slipper.

For the longest time, maybe even the first 5 years of my having a disability, this would have been a horribly complicated thing to do. See, I wouldn't let Joe help me with something like that anywhere where it could be seen by others. I'm not sure what I was keeping secret but it was a secret I was keeping. We'd find a bathroom with a large stall, we'd go back to the room, we'd spend a lot of energy on keeping my needs and his support in the closet. I don't know what happened that made, one day, that all seem kind of silly to me. Big deal, Joe helps me with my slipper when it falls off.

There are a few gawkers, of course, but most people go by without any real notice of us at all. On this occasion, Joe got himself seated and then I rolled up to where he could comfortably reach, I lifted my foot, he righted the situation. Then he said, "Let me make sure the other one is on securely too." I dutifully turned my chair and lifted my foot. It was then I noticed a woman, stopped, staring, and slowly shaking her head in disapproval or maybe disgust (or whatever reason that causes people to shake their heads at things like this).

I looked up at her and had one of those moments, I was in a tremendously good mood, and I was looking forward to our stroll out into downtown Charlottetown. I said to her, excitedly, like a breathless princess, "Oh, my gosh, it fits. IT FITS!! I get to go to the ball."

That snapped her out of the stare, she said, "Go ahead, make a joke," and stomped off.

I thought to myself, "For many things in life, that's pretty good advice."

Nuit Blanche

It happens, on early mornings like this one, that I find myself reliving a particular moment of my life. I was just starting out life as a wheelchair user and was dealing with the changes that came along with my new status as a disabled person. The physical part of it was fairly simple. I'd worked, in the long ago past, with teens with physical disabilities, I knew about the physical barriers and I knew that I'd need to learn the logistics of navigating a world that still considered access a gift given in charity to those who don't quite deserve the generosity. That I was prepared for.

What I wasn't prepared for was the automatic assumption that a huge part of my life was over, simply because I was a wheelchair user. I clearly could not travel anymore. I clearly would have to give up lecturing and consulting. I was trying to fit this into my head. Why were all these people, people who work with people with disabilities, telling me to simply give up and move on? These were the people who were supposed to be my support as I reentered the world as a disabled person. I got the message that I should be glad that I was alive but I should realize that being alive wouldn't mean as much as it did before.

Joe and I had a trip scheduled to the UK. I went to see my doctor and asked him about the trip and the travel. He saw no reason for me to be grounded. We talked a bit about energy and rest. We talked about some common sense things that I'd have to think about in terms of my own care and care for Joe. He simply didn't see the obstacles that others clearly saw. We went. Four weeks, eighteen lectures, fifteen cities. I was tired but exhilarated. I'd loved it as much sitting down as I had standing up.

On the night before travelling home, I was up, like I am now. Thinking about those non-disabled specialists in disabled living and how they wanted me to simply expect less of myself, less from the world ... less would be the new normal. They were right in some ways. Some organizations, while negotiating to bring me to train, on finding out that I was a wheelchair user backed, gently and quietly out of the negotiations. They used words like 'logistics' and 'mechanics' ... meaning of course that there was no way they wanted to consider or be bothered with access. So, I lost part of my business.

But they were very much in the minority. Others, most, just took it in stride. I'm now a few hours car ride from home, I've been in 5 cities, done 7 days across those cities, and I've travelled nearly 5000 kms to do it all. I enjoyed the work, the people and the challenges that each day brought. Completely.

And here I sit, not being able to sleep because of the excitement of going home. Where, by the way, I will do my first International Webinar this week. This week I'll be working with the folks in England about my trip over in the Spring - like we've done every year. I wonder, not at doing what I've always done, but at why those who first spoke to me about my disability were so insistent in having me adopt the 'role' of helpless and the 'status' of lesser? Few were encouraging, most were wanting me to have the 'big realization' that my life would be 'forever changed.' They never said, that I was now 'confined' to a wheelchair, but their words whispered the message.

So I'm here, typing quietly in the dark, on the morning we go home. This is tradition. It is now tradition for me to be doing this in my wheelchair, but it's been my tradition since I began this work several decades ago. Going home is exciting. And, in a small way, proving those voices wrong, is equally pleasing.

Wherein I become THE PUBLIC

I was about to disembark. The ramp was down, the speed on my wheelchair was lowered and I was getting into place. Just then Joe asked me to wait for a second because he wanted to get my hat, scarf and gloves so I could put them on as soon as I was out in the cold. In that very short time a man with an intellectual disability came along, a very tall, very thin, man. He looked to be somewhere in his thirties. He asked Joe a couple questions about the MV1, we're used to this now, and then leaned against the building.

Joe knows I don't like to have an audience when I'm getting in and out of the vehicle so he just positioned himself in front of the man. Joe's job is to ensure I stay straight on the ramp and come off without disaster. The fellow then moved over, smiled at me, and said, "I want to watch you come down the ramp." I was now teetering at the top. I saw there was no malice in him, but he was staring at me intensely, uncomfortably.

I said, "This is kind of private for me and I would rather you didn't watch."

He got very defensive and said, "I'm not doing anything, I'm just watching."

In the kindest voice I could muster I said, "I know, I know you are just watching. But sometimes people don't want to be watched and most times people don't want to be stared at."

"Oh, Oh, Oh, OK." he said and stepped over to the side, out of my view.I came down the ramp and Joe flung my scarf over my shoulders and I was putting on my gloves which I hadn't realised that Joe had kept warm by placing under the floor heater of the car. Lovely.

He appeared again. He said, "Thank you for telling me to move, thank you for telling me not to stare at you. I keep upsetting people and I never know why. I wish people would tell me when I do something that makes them mad."

I reassured him I wasn't mad. I also suggested to him that it wasn't people's job to let him know how they are reacting to him. I asked him if they seem to get mad when he's watching or staring. He paused and said, "Yes." "Then ....?" I asked. "I shouldn't stare." I told him that's a good idea.

I asked him if he had support staff and if they had talked to him about staring at and watching people. He said they had. Then he said, "But they are on my back about everything, I thought that it was just another thing to bug me about. It was different for you to say it. You're just ..." Then he was lost for a way to describe me. Finally he said, "You're just THE PUBLIC."

I laughed and said that I was. We said goodbye, I wished him well. He was a nice guy - and I hope that he learned something today. I know I did.

The Best Pizza Topping

Night before last we arrived in Charlottetown, really tired from both the drive and from this being the last stop on a several city lecture/consulting tour. We had thought about going out for a bit to explore but both of us were bagged and decided just to stay in, order food, and get ready for the following day.

On the ride over we spoke with Heidi, one of the organising committee about lunch. We came to easy agreement about ordering food in to the venue to avoid the rush of getting out and back in an hour. This time line was once OK for me but now as a wheelchair user, so much time is taken up with getting in and out of the van, tie downs and complicated seat belts that there's no time left to eat. We were all good with that Heidi said she'd check around for options.

I was checking Facebook and up popped a message from Heidi, in it she said that we'd be ordering pizza ... ALRIGHT ... and then she went on to say that the company we'd be ordering from is a local one, not a national or international chain AND that they were an inclusive employer particularly with adults who are affected by intellectual disability.

This kind of action, which comes from the right kind of thinking, pleases me no end. Using human service dollars to reward those who employ and support the people we serve makes such sense to me. Years ago I worked as a direct support professional in a group how with a manager who strongly believed in advocating  in every way possible for full inclusion. She went to every grocery store in the neighbourhood and explained that she was looking for a place to shop for the two group homes in the area. She would spend those, considerable, dollars at a store that hired someone with a disability to be part of the staff.

Did she hold them at ransom? Maybe. But it worked. One store manager jumped at the chance to interview a few people and ended up in hiring a fellow with a disability, WHO STILL WORKS THERE. He got the job through advocacy but he kept it through skill.

So when Heidi said that we were going to order from a place that stands in support of the people we serve and the work we do ... well that was probably the best topping we had on a pizza that was already, very, very, good.

Right On!

Yesterday I had the honour of working with a group of self advocates who had wanted me to facilitate a meeting where they wrote a 'Bill of Rights.' I arrived at the room moments before we were to start and it was standing room only. Luckily, thought, I'd brought my own chair. I could tell that they were up for the afternoon and up for the challenge of creating something of their very own.

We began, as I always do, with a set of ground rules - which are fun to teach. People were up, participating, reading, doing roll plays - applauding one another, supporting one another, encouraging one another. It's nice to do these with an already established self advocate group. They have already learned some important things.

They have learned to value the others in the group.

They have learned that every voice is important.

They have learned that all deserve respect.

And in doing this they learned some deeply important fact:

That they have value.

That their voice is important.

That they deserve respect.

I think one of the powerful things about the self advocacy movement is that, at it's heart, it's a movement about pride and self esteem. It's a movement about community and support. It's a movement about caring for others and for self.

And that's what I saw. Most, though not all, who were there were part of an established and well run self advocacy group. They carried themselves with dignity and they saw the importance and the purpose of the work being done.

I was honoured to be part of the process.

There are times when I truly love my work.

Canadian Blog Awards

Nominate a great Canadian Blog for the Canadian Blog Awards ... though it says that the nominations are closed, they aren't yet - they are hoping for more nominations. I've already been nominated so don't bother nominating Rolling Around - get out there and nominate the Canadian Blogs that you love, Just click here to go to the nomination page.

Today's blog follows.

The Ask

After work yesterday I headed over to the outdoor mall that is near to the hotel we are staying in here in Dedham. I zipped along the side of the road and then down the access ramp into the mall. Joe, walking, was a few minutes behind me. Once in the mall I drove slowly along looking in the stores and window shopping.

At one point I saw something in a store that I wanted a better look at, so I pulled up in front of one of the two entry doors and leaned forward to get a look. I really didn't have the intention of buying anything, I just love to tantalise myself with the idea of making a purchase. It's what I love about window shopping, it's what Joe hates about window shopping, so it was nice to have some time, while waiting for him to catch up, to just look around.
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Suddenly two passersby, a mom and a boy of about 14 came by, the boy rushed forward to open the door for me. Wanting to be helpful, he was eager to jump in and be of assistance. His mom, though, put her hand on his arm, she said quietly to him, "Ask first, he may not want help." The boy turn his face to me and said, "Would you like the door opened?" I toyed for a second with accepting his help, even though I didn't want to go into the store because I wanted to reward him for his impulse to kindness. But then I thought that there was a bigger lesson to be learned here, that and I didn't want to then have to figure out how to get out of the store. Few stores in the mall have automatic openers.

I said, "No, I'm just window shopping, but I want to thank you for your kindness is asking and offering. I really appreciate it."

He grinned.

His mother looked, appropriately, proud of her boy.

What good parenting though. She helped him know how to best help me. If he learns to ask first, it will help him in so many areas of his life.

Great kid.

Great mom.

It's surprising how often those two go together!

At the Store: What do you think?

We were in line up to purchase a few items. As Joe and I were chatting, I didn't notice the clerk in any real way. I heard her voice as she and the woman in front of us were talking and laughing about something. When it was our turn, Joe emptied our bag onto the counter and I moved round to be out of the way of those wanting to get by. It was then that I noticed that she had a disability. One arm was quite a bit shorter than the other and the hand on that arm was unusually shaped. I noted it without thinking much about it at all. Disability, difference, big deal.

The clerk was expert at using just one hand. She'd clearly had lots of practise and did everything with ease. Then something slipped out of the hand she was using and she caught it with the other hand. She looked up at Joe a bit of fear in her eyes, and apologised. Joe just shrugged his shoulders and told her it was no problem. The woman behind us, noticed, I think for the first time - the arm and hand that were different. She then quietly pulled away and went to another teller. I noticed. Joe noticed. The clerk noticed.

I saw Joe lean forward and whisper something to her, she laughed.

I asked him later what he'd said, "I said, 'Screw her! And her little dog too!!'"

The woman who walked away. I wonder if she thinks about what she did. I wonder if she thinks of it as any form of prejudice or bigotry. I'm guessing not. I think that people with disabilities are still far away from having legitimate minority status. Far away from having words like 'ableism' or 'disphobia' understood as terms denoting our experience of prejudice. People don't have to challenge their behaviour because the, as of yet, have no name for it. Racism and sexism and homophobia exists to describe but also to challenge. People can stop and ask ... Am I that?

The woman who was clerking, had she been taught or told or made as a condition of employment to use only the one hand. The other was perfectly functional, we'd seen that. Why was there fear in her eyes.

I think I know, what do you think?

Red

I apologise, sometimes, when I'm on the road, I get days mixed up. Today, not yesterday, is Remembrance Day, I wrote my post a day early. Yesterday, I stopped at eleven for a moments silence - said a quick prayer, and then spent the rest of the day paying particularly close attention to my freedom. It ended up, because of those things, a pretty good with moments of completely profound realizations. A day in remembrance is a day spent realizing that freedom really isn't another way to say "nothing left to lose." Freedom is a hell of a lot to lose.

Even sitting here, writing this blog, expressing opinions that sometimes, maybe even often, run counter to mainstream messages about disability. My freedom to speak, to protest, to say things that I want to say, how I want to say them, using words that I chose without fear of reprisals. Remarkable. The words are typed in black but they were won with red.

Knowing the participation in both wars of people with disabilities and of gay people, allows me the honour of remembering through living fully, living freely, and living openly the contributions they made.

I wonder if those gay soldiers, hiding who they were in fear of their own troops - held hope in their hearts for a day when those hearts would be free? I wonder if the idea of their own freedom, their personal freedom to be, was so far from being conceived that they could only have the vaguest of thoughts .... of two men, in Boston, spending a day being together, openly, a couple.

I wonder if those with disabilities who served could imagine where access would become part of the agenda of a community of advocates with disabilities. I wonder if they could have imagined that the hall I went into today would have, tucked onto it's side, a ramp, with a door that opened automatically? \I wonder if they could imagine the room that I'm staying in, with adaptions that make travel possible, make contribution possible, make a lovely Sunday afternoon possible?

For me, the Remembrance Day that wasn't is now just a prelude to the Remembrance Day that is. I get another day of thoughtful realization that I'm free. Another day to remember, that everything we do, is underlined in red.

Cuthbert Reporting In: Remembrance Day

It's Remembrance Day in Canada, a day which holds tremendous meaning for me. It always has, my father fought, and was wounded, in the Second World War. He chooses not to talk about it, he chooses to remember in silence - no one hat lasts for 60 seconds, but one that lasts a lifetime. I remember seeing a picture of my dad, taken just before he left for war - a picture of him, unwounded, no bullets holes in his body; a picture of him before his eyes would scar his soul with the things he'd see. The picture looks like a picture of someone who looks like my dad. I always had a secret wish that I could have met that man - if the world had been different - I'd have liked to met the smiling, happy man in the picture before ...

But beyond a deeply personal meaning, Remembrance Day has taken on layers of meaning for me. Firstly as a professional in the disability field, then as a person with a disability myself. I had never been taught about the slaughter of disabled people in Nazi Germany, I had never even heard it mentioned. I remember, with a shock reading of the T4 program which led to the killing of those considered inferior. Using language, uncomfortably like the rhetoric of today, of the 'cost' of these lives and promotion of the 'life not worth living', people with disabilities fell at the hands of the doctors who suddenly had forgotten their oath of care.

But I also remember the heroes with disabilities who fought in the war. There are so many to choose from, but I think my favourite is still Virginia Hall who had lost her leg after a hunting accident. This meant that she had to resign her position with the US Embassy because they would not employ a person with loss of limb. She made her way to England and joined forces with the Special Operations Executive who trained her and sent her back into the field as a spy. She became the 'limping lady,' a thorn in the side of the Nazi's who named her the most wanted of all the Allied spies. Perhaps because she was one of the most effective. This woman deemed 'unemployable,' this woman who was compelled to resign because of her disability, went on to be an important part of the British war effort.

I suppose it's only fair that I mention Cuthbert. Cuthbert was the nick name that she had given her wooden leg. It was also used as a 'code name' if she had to mention it in her communiques. At one point, when escaping danger she wrote, "I hope Cuthbert doesn't give me any problems." The operative who received this missive, didn't know who Cuthbert was but knew how important it was to get Hall out safely responded with, "If Cuthbert gives you trouble, shoot him.:

Cuthbert made it out alive.

Today, when we mark our minute of silence, I will think of my father, I will think of those who were 'cleansed' from society under the T4 program and I will think of Virginia Hall and others with disabilities who fought the good fight - soldiers, pilots and spies - against an enemy who saw no worth in their lives.

What The Bellman Said ...

The MV1 we have rented for this trip doesn't have the automatic ramp, this one is manual and is pulled out by hand. This means that it's also a bit shorter than the automatic one and, when set on the ground it's a bit steep going up and in. For that reason we've always set it down on a curb, it makes entry and exit much easier. We were leaving from the hotel, where I'd spoken, and the vehicle was pulled up being loaded. I'd asked the bellman where we'd go where we could find a bit of curb to pull up to so I could get in.

He said, "Just get on here."

Both Joe and I were aghast, that mean that we'd be setting the ramp down right on 7th avenue where traffic was non stop, heavy and driver's have a slightly wild look in their eyes. Joe said, "Wouldn't that be suicide?" The bell guy said, "I'll make sure you have the space." I started to say something about the angle of the ramp. He said, "Have you tried going up from the road?" I said that I hadn't. He said, "Well, then you don't know that it can't be done."

We went around, I had misgivings, but he had a point. I'd never tried. The ramp was extended and it wasn't as long, nor did it intrude as far into traffic as we imagined. I mentioned that I didn't like the idea of stopping traffic. He said, "Oh, they won't stop, they'll go around and over, but they won't stop." I started to say that I didn't like to be a bother. He said, "We move traffic all the time here, people load in all sorts of stuff in every door they have. What makes it OK for them and not OK for you. Don't tell me that your needs are different than theirs. They need to load stuff in, you need to get yourself in, people get that. You do it and I'll be you don't get one horn honked at you."

I got myself round to the front of the ramp, the first try I couldn't get in. The bellman said, "You've got to take a run at it." I knew he was right, I backed up, traffic flowed around me, and I zipped up and into the vehicle. No problem at all. None. I was in, now the manual chair was in and I was being strapped to the floor in preparation for leaving. I thanked the bellman. He said, "I hope you don't mind me saying, but you have to remember to take what's yours. I've done this thousands of times and not one guest thought that getting stuff into the car, and taking the space they need to do it, was an imposition. So, I tell you, take what's yours."

I've only been disabled for 7 years and already I'm beginning to forget what's mine.

I'm beginning to see my needs as exceptional, or special - after all that's what they are called.

But I need to get back to basics and simply take what's mine.

A Bite of The Apple: A Place Aware of Space

We arrived in Manhattan last night, fighting our way through traffic, and arrived to find the hotel on a one way street going the wrong way. You see we've got the MV1 which is an accessible vehicle and the ramp comes out the passenger side. The hotel was on a one way street and cars pulled up on the driver's side. There was no way we could pull the ramp down to get out, we'd block the whole street. So we drove until we found a spot, at some distance from the hotel, where there was space to stop and get the ramp down and me out.

There were two traffic control police officers there and they were shooing people away from stopping where we'd stopped. I rolled down my window and called to them one strolled over looking like he was ready to blast us for stopping. I explained the situation, said that we just wanted to get me, in my wheelchair, out. Could we have a few minutes. He looked in, examined the fact that I was sitting in one wheelchair and saw that my big power chair was in the space behind us.

"OK," he said and then indicated he was talking to me, "get out as fast as you can. And you," indicating Joe, "then get the hell out of here." Gruff, but then that's what he's paid for, but reasonable. I managed to get out in good order and then Joe drove off to go around the block and back to the hotel. I've never been in NYC in my power chair before and it was quite the experience. Usually when we're here, I'm in the manual chair and Joe and I both work to get me where I'm going.

I got to the corner and was surrounded on all sides by people waiting to cross the street. I crossed with them, simply going with the flow. I had to cross again, and the same thing happened. There were people everywhere and though they didn't seem to see me they were deftly stepping around me and by me like they were with each other. Getting where they were going seemed more important than some guy in a wheelchair on the street.

After checking in the hotel, we went to look around a wee bit and found a cool kind of resto-deli and went in to investigate. Again it was packed full of people and I found I moved with relative ease. I had to be careful, as I always am, but they were all being careful too - with me, with the food they carried, with each other. It was like everyone had run into others often enough to know to be aware of space theirs and others.

My space was simply granted, in a crowded store, on a crowded corner or in a crowded street. I liked it. I would have thought that in a city that never sleeps people might have been a little more testy. |But no. We didn't have much time, we didn't go far, but I took one big bite of the Big Apple yesterday.

Reaching My Reacher

What do you do when you can't reach your reacher?

I have a reacher in my office. For those who don't know what that is, it's a thing that reaches to places you can't reach. For me everything that falls on the floor also falls into that category. But, a couple days ago, my reacher, which sits on my desk awaiting duty, or play when I get a little bored (I can pick up a dime given time), fell to the floor. Right smack in my way.

Most of you know that I use a wheelchair pretty much full time but I can walk a few steps. My office is placed right beside the accessible washroom and I can make it from chair to throne and back no problem. But now my reacher was on the floor, in my way and, obviously, out of reach. My walking is unsteady at the best of times and anything that interrupts my gait inhibits any walking at all. I was stuck.

I did several things:

1) I stopped drinking my tea.

2) I stared at it for a long time waiting for it to leap into my hand. It isn't a wand, I'm not a wizard, it lay there like a cold dead thing.

3) I began to look for someone to ask. The office was quiet, everyone seemed out. I tried to will them to come. They didn't. Never have I felt so incredibly alone.

Thinking that if I concentrate hard on work, time will fly by and eventually either someone will come or the day will end and Joe will arrive to pick me up, I set about being industrious. That worked fine for about 15 seconds and then, being 60, I thought, "Oh my gosh, Dave, urine trouble now!" I am in the third age of man: diapers, tan pants, black pants - an emergency was approaching quickly.

Then, I saw a fellow with a disability, from the downstairs work programme, head by my office on the way to the head. I called out his name. He stopped, stuck his head in and said, "I'll come in on my way back from the toilet." Great! He's coming back.

Why do some people take 4000 years to take a wee?

I mean really.

He arrived back and I asked him to pick up the reacher for me. He smiled broadly and grabbed it up and put it back on my desk. I thanked him.

Seconds later I relieved myself and made my way back to my desk.

I saw him again later and thanked him again. He said that he was glad to do it. And I saw that he was. He said that he liked helping people out sometimes because people help him out all the time. I told him I knew what he meant.

And I do.

It's nice to be in a position to give help.

And sometimes ...

It's nice to be in a position to need help.

Sometimes.

What Community Can Do

The last 24 hours have been pretty amazing. I became aware the Sephora, a company that markets 'beauty' products was selling a Kat Von D lipstick with the shade called 'cellebutard.' I reacted, as I do, to words that hurt and demean others. I started a petition at Change.org and went to work. I personally contacted over 700 Facebook Friends, I emailed everyone in my contacts list, I sent requests to friends who had access to large mailing lists. Then I posted the petition on Facebook. From there it was picked up and shared and reposted over and over again. Within twelve hours there were over a thousand signatures and they were coming in, from around the world, and at quite a clip.

Over at the Sephora Facebook page, many who signed the petition, and many who'd heard through other means, had swamped the page with protest. No one was leaving any kind of 'canned' or 'form letter' message. They wrote personal messages crafted uniquely from their own life experiences and their own outrage. The same was true on the petition page, it's moving to read the 'why' of the signatures. People spoke of love of family, of justice, of fair play. People expressed deep, deep caring.

I was on the road and checked in to the petition every hour or so and was shocked to see the numbers climbing so quickly. I was amazed. We got settled in our hotel and I went on line to find that Sephora had left this message, over and over again, on their Facebook page to the messages of distress and protest:

Thank you for calling this matter to our attention. We are

deeply sorry that the name of this lipstick has caused 

offense, and we will be ceasing the sale of this shade both 

in our stores and online.

All of this was achieved in half a day of organized protest. It was amazing to see so many people decide that action was better than inaction. So many people push aside the leading cause of 'inaction' - nothing will change anyway. So many people just do something. Doing damns the darkness.

I have always loved the idea of community, thanks for letting me experience the reality of it.