Friday, May 31, 2013

The Debate - OK Choose a Side

Joe and I had a spat, which as turned into a dispute. I  am, as I am during our occasional rows, firmly convinced that I'm right. Joe is, as he is during our, ahem, disagreements, firmly convinced that I'm wrong. We agreed to let you all settle the argument.

The background to the Joe v Dave square-off:

We arrived at our hotel in NYC, a boutique hotel there website had told us, and manage to deal with the car, get me into my chair and arrange for luggage to be brought up. We enter the front door and find no way in for me in my chair. There is an elevator, there is a set of stairs. We thought this must be the way because we had followed the bell hop in, he'd have told us if there was another way, right? Wrong. Joe goes in search and we are finally directed around the side of the building to another entrance. We go to that entrance and a met by a security guy who tells us that the hotel is under construction and we're going to have to go in the 'construction entrance.'

The construction entrance is a narrow, dark, steep entrance way with soot blacken walls and ramps built out of plywood. In the effort to get down, most of that effort was controlling the terror that either my chair or I would get hurt. Once down, I turned to look and knew that I was not going to be able to go back up those stairs, or if I did I would be taking a huge risk.

I'm angry.

We get to the desk where I express my anger, at the situation, not at the clerk, I express my frustration that I'm in New York and I'm trapped in my hotel. She assures me there is another way in and out. I say that we should have been notified that the hotel wasn't accessible because they knew I was coming in a chair. She says, 'Your room wasn't booked to be ADA.' At this point I just stare at here, there are few things I'm sure of and one of them was that the room was booked.. Magically, even though the accessible room hadn't been booked, they had one available for me.

We come back down to the lobby to find this other exit. Every security person says there is no other accessible exit. The manager tells me that there isn't one. Finally I get them to talk to her, and yes, there is one. They take me over to an elevator, go down in the bowels of the elevator, we make our way through a hallway clogged with laundry carts, many of which have to be moved, and then get to a newly installed elevator that takes us up to a service entrance, and from there, we access the street. The same needs to be done on our way back, Except, I've got to wait on the street while Joe goes and finds someone to take us through the underground maze.

While we were out, we fulfilled two missions, I got to do a bit of shopping, Joe got to have a Manhattan in Manhattan - we've been doing that for years! While he sipped on his redundant drink, he asked me if we should tip the security guys who we will need to get us in, after we finish at the bar and then in the morning to get us out. We'd already tipped the car guy and the bellhop who took us to our room, shouldn't we also tip the security guy.

My response was the beginning of the dispute, for which we need your perspective, I said, "No, you don't tip for access. The car guy and the bellhop, everyone tips those guys, it would only be people with disabilities who have to tip for the mere act of getting in." Joe disagreed, he said, "It's not the security guy's fault that the hotel isn't, at present, accessible. He's having to go out of his way and will actually be spending more time with us than any of the other people we tip."

I remained resolute.

"No, you don't tip for access."

Joe said, "We aren't tipping for access, we are tipping for service."

This sounds so dry now, here in print, but it was a somewhat passionate and sometimes loud discussion.

So, we agree to abide by you ...


(PS - I'm adding a post script after reading a few comments - be sure, be very sure, that complaints were made at every level it was possible to make a complaint. Everyone knew that I was very, very, unhappy to have entered through a makeshift and frightening construction entrance.)

Thursday, May 30, 2013

Thoughts Please

So meet the 'new' symbol that's being proposed.

Now, full disclosure, I know NOTHING about the history behind this and only found out about it because someone emailed me and asked me my opinion of it. I decided to wait to investigate until we've had a chance to chat about it here first.

My first thought was 'why don't I care about this?'

Like the song from A Chorus Line ... I dug right down to the bottom of my soul and I felt nothing.

I imagine that a lot of work has gone into this, a lot of thought and hours and hours of discussion. I imagine that there are people really passionate about this and who find meaning in what the new symbol 'says.' I do not wish to disparage that ... I think it's important that people fight the battles they choose to fight. I just don't find myself being caught up in the new design.

It strikes me that I may not be the best person to respond to this. I am, 7 years in, still recently disabled. I've lived with the old blue badge guy for a relatively short period of time. For me getting the blue badge was important both for the accessibility it gave me and the identification of myself as a disabled person. For those who've been with the symbol for a lot longer, they may have come to dislike it and desire change. I'm good with that.

So ... what are your thoughts? Do you like the new symbol? Do you think it says something new and different? I'm curious ... comments please!!!

Wednesday, May 29, 2013

The Question

"How do you help people?" Ruby asked.

I was reminded at being at a lecture, many years ago, where the keynote speech had been given by a fairly well known, fairly wealthy man who was a wheelchair user. His speech was wonderful and funny, and I'm sorry but it was, inspiring. This guy knew how to get a message across. He'd left a few minutes at the end of his speech for questions.

After a couple of fairly bland questions a fellow with a significant physical disability asked a kicker of a question. "You give a good speech and you have a great career, but the question I want to ask is this: What have you personally done to make the world better for people with disabilities - you the person, not you the lecturer, you the businessman - what have you done?"

It was one of the most awkward moments I've ever experienced in all of my travels. The keynote speaker sat there and was stumped by the question. After a second or two the host called an end to the questions and there followed a fairly weak round of applause.

I learned something that day - beyond 'never take questions at a keynote.' I learned that I had a responsibility to do something more than what I'm called to do at work or what I'm paid to do behind a podium. I have a greater responsibility simply as a person who cares about a variety of issues. Do I do more than just care - does care translate into action - do I make the time to take the time to do more than just gripe or grumble.

So when Ruby asked me that simple question, I answered it as simply as I could. But it made me think again about my responsibilities to my various communities.

If I was challenged would I be able to say that I've done my part, that I've met my responsibilities? I think I could, for the most part, say that I try.

But that little voice asking me that question reminds me that I am now an elder - in my various communities. I owe so much to those who fought for the access that I have, the rights that I have, the freedoms I enjoy. Those in the early disability movement, those in the early gay movement, those who, in their day, wondered if it would matter. Well it did.

Really mattered.

I have always believed that what we do is parent every child with a difference and every different child every day that we draw breath. We do this by caring enough about the world to speak when voices are needed, to take action when work needs to be done, to refuse to accept what is and to work for what can be.

That's how you help people.

I hope that I remember a little voice saying, 'how do you help people' and I hope I'll always be able to answer.

Tuesday, May 28, 2013

The Media is Relentless in the Search for Truth

I have been interviewed any number of times over the years. I've been asked hard questions, personal questions, philosophical questions. I thought I was prepared for anything.

Then ...

The phone rang.

Ruby's small voice told me that she wanted to interview me for a school project. A school project! She's in Grade One! Anyway the project was to interview someone who is a community helper. Ruby thought of me and the interview began.

I was asked where I worked.

"Vita," I said.

"What do you do there?"

"I help people with disabilities."

"How do you help people?"

"I teach them things."

"Do you work on a computer?"

"Yes, I do."

"Do you chat with people?"

"Yes, I have meetings."

"Do you teach people in the community about disability?"

"Yes, I do, I teach people all over the world."

"Um ..." here it seems she'd run out of questions, then, the big one ... "Do you get paper cuts some times?"

A question I'd never been asked before - I admitted that I do sometimes get paper cuts.

You heard it here first!

I feel so exposed ...

Monday, May 27, 2013

Street Torture

What I saw

She was unhappy and upset. She struggled against the straps that held her in. Her protests were not heard, not noticed, by the two young people who where pushing the wheelchair down the street. I was sitting in the passenger seat of a car, unable to do or say anything to anyone. I wanted to protest.

Do people forget that they can be seen? That what they do, they do in full public view?

Do people know that they can be seen but figure that no one will care if what they do they do to someone who permanently resides with two labels slapped on their forehead - 'other' and 'lesser'?

What I saw

It was clear that the woman with Down Syndrome, riding in the wheelchair, did not have a physical disability. She made it clear with her protests. She called out that she didn't need the wheelchair. She called out that she wanted to walk. She called out that the tight belts hurt. She kept making like she wanted to stand up in the chair.

The two youngish people with her, I am assuming paid care providers of some kind, were walking side by side, talking and laughing. One of them pushed the wheelchair and the other walked along side the 'pusher.' They were obviously enjoying the day, the sun, the bustle on the street. The woman that they were pushing, the woman who was strapped into the chair, existed in a different world completely, as if she was there by chance in front of her.

What I think About What I Saw

When I am pushed, by Joe, or by a friend, I never feel as if I am alone with a human motor behind me. It's hard to chat and talk sometimes but we do anyways. It's clear to me, and to anyone watching, that we are out together, that we are part of a social unit.

I sometimes see people in wheelchairs who are pushed, alone in the world, by someone who is simply doing a job. Getting someone from here to there, with no connection - the chair could be a wheelbarrow full of straw, a lawn mower, a grocery cart.

A wheelchair can be an isolating experience.

What I'm Guessing About What I Saw

Some time in the past someone made a decision, for some reason, that it would be easier to have the young woman with Down Syndrome ride in a wheelchair pushed in front than walk along side. There may have been a reason other than convenience - and if there was - it was clear that she did not consent to this decision. It was also clear that the two young staff didn't care that she was in distress. It was clear by their casual chat and laughter with each other that they were USED to this.

What Was More Concerning

Those that noticed her distress seemed to look sympathetically to the staff and with annoyance at her.

Those Two Damn Labels

'Other' and 'Lesser' are the labels we should be worried about ... because they are the ones that make abuse acceptable.

Sunday, May 26, 2013

Wheels and Wings

We were headed down to get some groceries for dinner. Ruby and Sadie had just had their nails done - pink and purple respectively - and Marissa was fresh from her visit to the hair salon. Joe and I, well we scrubbed up but definitely were 'Miss Geniality' and 'Miss Showed Up' in the pageant. On the corner, a few blocks north of the grocery store, were two young men. One of the them was riding a stationary bike the other was holding a sign. The sign told us that they were raising money for services to people with AIDS by pedalling the distance from Toronto to LA.

I noticed them notice us, it was hard not to, two kids, a big guy in a wheelchair a young woman and an old dude make up the kind of group that isn't often, sadly, seen. On our way down to the store I decided that I'd like to take the opportunity to give a bit of money and give Ruby and Sadie the opportunity to participate in giving. Both girls are tremendously generous girls and they eagerly give of their time. When I need help with the footrest of my wheelchair, either girl will willingly, with never a complaint, get up and come and help. When Joe and I need things carried from the kitchen to the front room - we have willing hands to help.

So on our way back Joe had managed to get the clerk at the store to make sure that we had two five dollar bills in our change. I carried the bills with me up the street. I spoke to both girls, one at a time, about the fact that we were going to give some money to help people who needed help. A couple questions were asked, a couple of answers were given, and by that time we'd arrived back at the corner where the two young men stood.

It's a busy corner so we had to move off to the side and each girl had their five dollar bill clutched in their hands. I told them that they could ask the young men what the money was for if they wanted to. As their money went into the bucket, one of the fellows explained what they were doing and why they were doing it. The other offered the girls the opportunity to ring the bell on the bicycle - which they did ten times, one for each dollar.

I saw the looks on the girls faces when they dropped the money into the container. Each of them looked very serious, understanding, both of them, that what they were doing was giving to someone else, helping someone else, caring for someone else. The looked, for all the world, like they were fulfilling a responsibility that somehow they knew they had.
The first time the bell rang Marissa said to the girls, 'An angel just got wings!' Then rings later, I think a dozen wings had been given out.

Saturday, May 25, 2013

Against The Wall

A group of teens, swarming towards the subway door, came face to face with a large woman, trying to get by them carrying two shopping bags. One fairly tall teen girl slammed in to the large woman, clearly purposefully, clearly aiming, successfully, at getting laughs from her friends. They moved quickly on through the door, the large woman did not. She stood there for a second, then walked a few feet over to the wall, leaned against it, and cried.

Those girls will never know, and maybe wouldn't care if they did, the human devastation they left in their wake. A woman, crumpled and crying, using the wall for support as if her back had been broken by the weight of their disrespect. I don't know what to do in these circumstances but I headed over to say something, someone had to say something. We all saw it. We all knew what happened.


Of course.

Silence is consent.

Silence is complicity.

Silence is collusion.

But before I got there another woman had arrived. She's someone I see around from time to time. She has an intellectual disability and works in one of the stores in the mall. She stood with the woman, talked to her quietly. Soon, they were laughing.

I rolled away, not needing to do anything,

I don't know what was said, I do know that when laughter starts - healing is underway.

What struck me as wonderfully ironic was that the woman who arrived to help wore a tee-shirt with the logo of a community living organisation. Sometimes slogans stay slogans, sometimes they become action - "community living" isn't a concept it's an action.

Friday, May 24, 2013

Freedom Fries

We were getting breakfast at McDonalds, the line up for the drive through windows was tightly packed and long. In the restaurant, it was equally busy, but it became evident that we'd walked in on a real community of people. It seemed that everyone knew everyone and that everyone was glad to see everyone there. Four men with intellectual disabilities were part of the mix. Two sat together, two others were in line up. All we simply another part of the group being treated with the same kind of laughing, joshing, camaraderie that filled the place. My appearance didn't cause even a ripple in the social waters of the place. I'm guessing that once the first stone of difference had been tossed in, all others lost their ability to cause waves.

One of the men had a very loud voice when he ordered his breakfast. He loudly ordered, "Pie and fries." He was asked what kind of pie, and he said, "I don't care, just give me the bigger one!" People laughed, he got served, the line moved on.

Pie and fries.


Freedom is felt in so many ways.

I'll bet that for most of his life he would have had people paid a lot of money to sift through his decisions, people who would have weighed out every choice, people who would have given the final word on if his decision was valid, if his choice appropriate.

People that, right now ... at the echo of 'pies and fries' are slumped over their desks crying.

Pies and fries.

We wanted people with disabilities to live in and be part of the community ... CHECK!!

We wanted people with disabilities to live independently feeling confident in their own skin ... CHECK!!

We fought for people with disabilities to have the right to make choices ... CHECK!!

I know that there will be those who will now Google the nutritional analysis of 'pies and fries' in order to be able to count calories ...

Could you maybe wait for a minute for him to count his blessings.


Freedom Fries ... Freedom pies!

Wednesday, May 22, 2013

I Think I Got it Wrong

Sometimes ... well, just sometimes ...

I was picking up a couple bottles of flavoured water in the store. This brand claimed to use natural, organic, flavouring but that wasn't their major selling point. They were the cheapest - the store brand in fact. I had loaded a couple into my bag and was looking over the shelf to decide on another flavour. A woman came over, asked very nicely, if she could reach something for me. I told her, genuinely that it was a nice offer but that I was fine. "You sure, now?" she asked. I said that I was. She smiled and headed off.

The bottle I had decided on was a little higher but I have a long reach. I wondered if I should have let her help me. Sometimes I get the feeling that my allowing them to give to me is a way for me to give to them. I know. I know. I know everything that's wrong with that. Because I get intrusive help and angry responses at refusals I am wary of any offer at all. However, I turned her down because I really could do it.

I understand this because there are some times where the best thing that Joe can do to help me is to let me help him. He does so much for me, things I can't do anymore, that there are times that I feel that i want to give back. The same is true in the world ... I want to give back too. I like holding the door open for someone coming after, I like giving directions to tourists in the city, I like trying to be as good at giving as I need to be at taking.

And that was a moment I think I got wrong.

I could have do it and did do it.

But I think I got less out of that than she did.

I think I need to brush up on my discernment skills.

Have you ever felt that maybe you made a wrong call about something like this?

Tuesday, May 21, 2013

WWRS (what would readers say)

We went to a movie yesterday in a building that was newly built. We'd looked forward to going there. I'm going only write a short blog because Joe and I have discussed this to death and we really want your opinion.

We got to the entry doors - they were huge glass doors, extremely heavy. We looked for the automatic door opener, there wasn't one. Nothing. Nowhere. I said that I thought it was odd that a new building wouldn't have easy access doors. But I went in through the door that Joe held open, realizing as I did that if Joe hadn't or if another person didn't, open the door, I'd not have been able to get in. Strange.

Once in and rolling over to get tickets we noticed that there was an accessible door, off to the side, completely separate from the other doors. Now it was beside them, though there was a visible barrier preventing that door from being seen when entering the main door. There had been no sign, that we saw, from outside the building indicating where disabled access was ... it was just a tucked off and out of the way, semi-hidden door.

Maybe its my natural inclination to see this kind of design as purposefully done - I wondered what the purpose was. Now this theatre is where a lot of the films are shown during the Toronto Film Festival and a lot of famous bums have been seated in the very plush seats that were in the theatre. They didn't have any real disabled seating in the theatre, either, but that's the subject of a post and a letter in coming days.

It was the door that bothered me.

Why create a whole new, out of sight, door for wheelchair users?

Why not just 'button' one of the many glass doors at the regular entry?

Could it be ...

No surely not ...

Could it be ...

No it can't be ...

Could it be that this building, which hosts some of the most beautiful people in the world has responded with a design that harks back to the 'ugly laws' ... making sure that none of 'those people' ever have to brush shoulders (or really brush hip to shoulder) with us less than perfect specimens?

Am I reading too much into this ... new building - separate, visibly and physically, door for disabled patrons ...

Could there be just a simpler reason for purposeful separating people with disabilities with the main stream of customers which enter the main doors?

Monday, May 20, 2013

Focus on Flying

There's a story that is making it's way around disability blogs and which is often posted and reposted on Facebook. It's about a woman with a disability who had be placed in an airplane seat at the front of the plane because the boarding staff didn't have an aisle chair available. An elite (?) flier demanded that she be given that seat because it was her right to premium seating because of her status. The article did not make it clear to me if she had booked that seat herself.

As you can predict .. uproar.

Two thing disturb me about this - first, and most concerning, over half of New Zealanders who were interviewed sided with the woman, thinking that she was well within her rights and that, though they would have given up their seats, they understand why the elite flier didn't. (a hit of a 'those damned disabled people and their demands' comes through). Yikes ... there is a hardening of attitudes towards those of us in the disability community.

The second is that the discussion is about the woman with a disability at all. She is a completely passive player in the story. Let's review:

1) she did not ask for that seat, she had a seat
2) the airline placed her there at their convenience, not hers
3) she could not have predicted that they wouldn't have an aisle chair available
4) the airline was asking the woman to move to accommodate the needs of the woman with a disability but that was disingenuous, they were actually asking her to move to accommodate the airlines needs.

Therefore this was a dispute between the airline and and elite flier. Disability is only a sidebar to the story. Yet, this story has made it out like:

1) disabled people are demanding
2) disabled people expect special treatment
3) disabled people are a nuisance

and most concerningly these days ...

4) disabled people take resources away from non-disabled people

I don't know Ms Black, of course, but I have been in these situations - I'd like to be as invisible as possible when in these situations. When stores, or hotels, or airlines centre me out I go through all 27 layers of hell (those who fit the norm think there are much fewer) as things get resolved. And yet, in each situation, I am seen as the problem - when, I'm not ...

A little example:

I book a hotel room, make it clear when I'm doing so I need the accessible room, I receive an email guaranteeing me the accessible room. I arrive to find out that a clerk has, five minutes before, checked another guest into the room reserved for me. Much upset ensues. The other guest is called and asked to vacate the room. Other guest comes down, glares at me for disturbing him. The reputation of disabled people sinks - seldom does anyone recognise that the guest is being asked to move by the hotel, because of their error, not by me. It becomes about me, not about a clerk who mistakenly gave my room away, not about a hotel that has a very loose policy about accessible rooms, not about the fact that I had only one option and that I booked that option. No, it becomes about what 'disabled people want.'

There are thousands of other examples. All of which shift the focus away from the real issue - which isn't my disability - and makes it suddenly like a spotlight has been shone on my wheelchair.

This story isn't about anything more than an airline asking a passenger to move to accommodate their needs in boarding the plane and getting off the ground on time. Yet, I'll bet that most of the people on that flight will talk about disability not about the unpreparedness of the airline with the right equipment and the attitude of someeone who believes that their needs need to be accommodated.

That's right - this is about needs demanding to be accommodated - the needs of ego, not the needs of mobility.

Sunday, May 19, 2013

Colouring Controversy: Rocking with Roxanne.

This is Roxanne and she has become the subject of some controversy in my life. On Mother's Day we went out for lunch with Ruby and Sadie and Mike ... to celebrate and thank Marissa for all she does. To keep the kids occupied at lunch I spent some time making a colouring book for each of the girls that had pictures of things I knew they liked and a cover page with their names in large colourable letters. They seemed to enjoy it.

A few days later I asked Marissa if the girls liked the books and she said that Ruby, in particular loved the book. I then set about making another. This time I found a picture of a little girl in a wheelchair and put some text with the picture:

Hi, Ruby, my name is Roxanne. Both our names start with the letter R. Can you give my wheelchair really cool colours?

This picture was slipped in along with a bunch of other pictures of things and places that I know Ruby loves. Along with that I found some mazes and puzzles and jokes. I really enjoyed making the booklet.

I showed this to someone who surprised me by accusing me of trying to brainwash Ruby with 'my ideas about disabilities'.


Hold it ...

Am I?

I just thought that since we, people with disabilities, were in the world, there was no reason for us not to
be in a colouring book. I didn't think I was putting forward an idea at all.

But ...

I am.

I am putting forward the idea of simple, natural, inclusion. Oddly, I didn't think of it as an 'idea' but as a 'reality' ... but it isn't a reality is it? It's still an idea.


So maybe I am putting an idea into a colouring book. I won't argue that I'm not.

But ...

It's a helluva good idea.

Saturday, May 18, 2013

the new normal: adapting to less

I was in a local shop. It's small. It has the feel of a local village shoppe even though it's dead centre in the middle of a large city. Even though it's small the aisles are such that I can get to almost every point in the store. Sometimes I need to take a circuitous route, but devil be damned, that's fine with me. I CAN get in the store because they've taken a piece of metal and tacked it over the small lip that separates the entrance from the pavement in front. They replace this regularly as it wears out.

A friend was with me and we were chatting as I lead them over to the tea section of the shop. There is one brand of green tea that I think is better than all others. It's hard to find. This shop sometimes carries it and every time we go in I look to see if they have some in stock. If they do I buy three or four boxes. There's only 20 bags per box so that's not as much as it might sound.

The tea wasn't in stock but one of the clerks there, who I see regularly, said hello as he was passing the two of us. I stopped him and asked about ordering a few boxes of the tea. I'm right out of it and am desperate to get ahold of some more. He chatted with the two of us, agreed to order some for me and then he went about his business. At the counter the woman was quite affable as I placed my items on the counter and paid for them.

When we left I remarked to my friend about how exceptional the service was in the store. She stopped in her tracks and said, "Did you really find that exceptional?" I said that I did. I didn't feel even slightly 'in the way' in the store as I often do in the much larger chain grocery stores, I didn't feel spoken down to or patronised in any way. I felt that I was treated just like any other customer.

She said, "It's sad that for you, what I expect as the norm, you experience as exceptional."

Could this be true?

Six years in to the disability experience and I am so used to getting less that the 'new norm' is satisfaction as long as 'less' isn't accompanied by overt acts of discrimination. Covert? OK, that's fine.

I know that it's important when working with people that you set expectations high enough to encourage growth - to encourage striving for better - to demonstrate faith in potential.

I wonder if now I've set the bar so low because I have no faith in the potential of society to strive to become more - pick a word: welcoming, tolerant, inclusive - and I have absolutely zero belief that it has any desire to reach those goals.

Or I wonder if I've set the bar low just so I don't have to always be doing something, reacting to something, speaking to someone, writing to someone.

I don't know.

In fact I'm still so flustered by what my friend said that I'm working though it ... so, what do you think ... do you think that over time those of us in the disability community think that everything is fine just if it isn't horrible? I'm curious if anyone else has lowered the bar too.

Friday, May 17, 2013

Tea Time!

Yesterday I went for a cup of tea, where I sometimes go. It's one of two or three places I know where the tea is made and served, the money is turned into returned change and the tea is made - all by people with intellectual disabilities. My whole transaction, from start to finish, was done with the staff of the cafe - not with the staff of the staff.

My order was taken by a fellow who found the box of green tea, plopped it into a cup, asked me what size of cup I wanted and then poured the right amount of water into the cup. When it came to doing the money, he called for help - but he called for a fellow cafe staff. The two, both with intellectual disabilities, punched numbers into the cash register. Well, that not quite right, the other staff, who was obviously good with numbers - simply showed the tea maker which buttons to push. He seemed to know that it was the other man's sale and the other man's responsibility - so he didn't take it from him.

It was great to watch such teamwork. It was great to see them rely on each other without calling for help from one of their support staff.

This means of course that their support staff are doing a really, really good job.

They must understand that their job isn't to be there and do for ... but rather teach a whole whack of, a real variety of ... skills.

We had our tea, I had gone with a friend from work, and chatted in the cafe. It was full of sound and laughter and great good spirit.

My tea was good.

The whole experience was better.

Thursday, May 16, 2013

Home, Finally Home

I turned the corner and there she was. Quietly talking to someone beside her. She looked up at me and smiled. A lovely quiet smile then, "Hi, David!"

My heart near burst.

I saw her first sitting, alone, on a ward in an intuition. Someone no one wanted. Someone left behind. When she moved to the community I would see her from time to time. Whenever that happened she leapt with joy, ran to me, calling my name. She was desperate, had always been desperate, for attention. For acknowledgement. For mattering.

Even though I always felt the edge of her desperation cut my soul, she endeared herself to me. Simply, I liked her. There lurked, behind her dark eyes, real joy. There lingered behind the craving need for attention, a heart that wanted to give. There lived, somewhere in the hidden recess of her soul, a quiet strength. I always knew that. I always felt that. And who she was ... along with who she could be ... drew me to her.


I liked her.

Then, suddenly and for no apparent reason, I just stopped seeing her. She wasn't in the places I was used to seeing her. She wasn't the topic of concerned conversation. She wasn't named in reports, incident or otherwise. She seemed disappeared. And. I kind of missed her. Though I knew that it wasn't me she wanted when she'd call out my name, it wasn't my attention she secretly craved, it wasn't our history that mattered, I still liked hearing my name pronounced from lips that smiled.

Over time, I think I stopped noticing that she wasn't there, wasn't part of the world I lived in any more. She was gone. The older I get the more I notice the footprints left in my life as evidence that others had once stood with me. The older I get, the more I need seeing the tread where others trod.

But, yesterday I saw her. Where I'd never seen her before.

Like I'd never seen her before.

She said my name with calm, with fond remembrance - gone was the need, the desperation, the sense of deep aloneness. Gone.

And so too was missing the cutting edge of isolation.

When we talked I noticed that the sun had come out from behind her eyes.

This is why we fought for community ... people come home to houses first, then, finally, to themselves.

I am honoured to be part of a huge civil liberties movement - aimed at garnering freedom for those with disabilities to live as a valued part of their community.

Aimed at having first one 'coming home' party.

And then ... another.

Wednesday, May 15, 2013

Walking Two Blocks North

You stare at me
And think you know
Exactly who I am.

You see my weight
The push of my belly against my belt
And the math, of who I am, comes easily to you.

You stare at me
And think you know
Exactly who I am.

You see the wheels that I push
To get round the barriers in my way
And the geography, of my soul, maps out in you mind.

You stare at me
And think you know
Exactly who I am.

You see my gender
And you compare me to other others
And the architecture, of my heart, blueprints perception.

You stare at me
And think you know
Exactly who I am.

You see the colour of my skin
And in your mind you see this as information
Allowing you to code, your approval, of my existence.

You stare at me
And think you know
Exactly who I am.

But I see you
Stare at me
And I know all I need to know ...

of you.

© dave hingsburger 2013

Tuesday, May 14, 2013

Morning Mail

I received a lovely email yesterday morning. I was up and stumbled to the computer - it takes me longer to get over jet lag than it used to - and checked to see if any emails had come in overnight. Only one had. It was a letter from a woman I'd never met who wrote simply to tell me how my writing and my lectures had enhanced her career and her care of the people she served. It was a lovely note, written for no other purpose than to let me know that what I had done mattered.

I sat, bleary-eyed, reading her note. I was unutterably touched by her words and the sentiment that she expressed. But what really struck me was that she simply didn't have to write it. She could have just gone on, thinking nice thoughts when she heard my name, and yet done nothing. Oddly, even though I was incredibly enriched by her note, I wouldn't have missed it if it hadn't come. I wouldn't have sat at the computer and thought ... harrumph, another day when she could have thanked me but didn't.

This made me think about the power of 'thank you' ... the power that comes with expressing positive or powerful feelings to those who may just need to hear them. I know that over the last few years I have tried to be more intentional in being thankful 'out loud'. After I became a supervisor, I wanted to be the kind that made sure my staff knew that they were appreciated and their efforts acknowledged. I don't know if I always achieve that but I do consciously try.

We were out with friends on Sunday for a Mother's Day lunch that we were invited along to. We were being served by a young woman who was working so incredibly hard. Every table wanted everything perfect, every child at every table wanted a wee bit of her attention. Her work, that day, was both physically and psychologically draining. She managed, with us and with others, to be personable, approachable and, of course, quick.

When we were leaving I stopped and told her how much I appreciated how she had managed our little group and how I noticed her care for others at other tables. I immediately felt badly because her eyes filled with tears. She said that she hadn't been thanked, once, all day. Tips were wonderful, she said, but it's nice to be spoken to as a person who is trying hard to do a good job.

And it's true.

I'm going to stop now - there's a person or two I have to write an email to ...

Monday, May 13, 2013

Fearing Fear, Facing Fear, Fighting Fear

(close captioning is available)

I make a habit of mentioning, during my lectures, that I am extremely anxious about being in front of an audience and that I require a bit of medication to help settle the nerves. I do this for several reasons:

1) it's true
2) if I do get a bout of extreme nerves the audience will know what's happening
3) I think it's important to be up front with the fact that I have to deal with extreme anxiety
4) maybe someone, sitting in my audience, will feel less alone

There are lots of private things that I do not share, however my status as a member of the gay community, the disability community and the community of people who have to deal with some mental health issues as well aren't among that list.. It's odd that the first two are much more recognized and accepted than is the third.

Several years ago I went through a very difficult time. It was the transition from becoming an 'unknown speaker' to a 'known speaker'. The increase in expectations was almost incapacitating. As a fat, gay, bullied kid, I had spent most of my life trying to be out of public view and suddenly I'm required to put myself on display. All of this got to me and I nearly lost my career. Finally when the anxiety was such that I was becoming unwilling to go out at all - and I was considering ending my career as a trainer and lecturer - I went and spoke to my doctor.

She was an extremely kind and incredibly talented woman. She listened carefully. She took my symptoms and their consequences seriously. Slowly she helped me pinpoint the moment of highest anxiety that I face, she helped me develop both real world coping skills as well as prescribing a PRN for me to take about 20 minutes before I am about to experience that bone deep fear. So with 'stress innoculation' and with a tiny bit of medication, I've managed to control the nerves and the fear. I still face them, but with more and more confidence as the years go by.

I tell you this because I promised to tell this story, here on this blog, to someone who attended a conference recently. Our initial contact was hostile. She accused me of 'making up' my anxiety to 'get sympathy' from an audience. Her evidence was that I didn't appear nervous and therefore must be lying.

I told her that not appearing nervous or anxious was not the same as not feeling it. I also told her that the very fact that I was managing as well as she seemed to think I was managing was evidence that the strategies I was using to cope were working for me, and working well. She stormed away. Furious.

We spoke again later. She came and sat beside me. Told me that she lives a life of fear and frustration. That she's lost all joy in her life because the fears she fears are ever present. It takes all of her energy to pretend to be normal and as a result she's lost all sense of normality. This time we talked more seriously and I expressed how much it helped to get help. That seems like an odd sentence but it's one that people often feel can't be true. Somehow getting help is an admission that you are beyond help.

Not true.

I was once at the point of being debilitated by anxiety. I am no longer at that point. I haven't been there for years. But every day that I get through is done because I know what to do and when to do it. I have strategies for moments of panic - real world strategies. I have medication for the peak times (only when lecturing) of fear. I'm good with that.

That moment when I sat down in front of my doctor and told her that I had lost the ability to cope was probably the best act of coping that I've ever done.

I told the woman that I spoke to, the woman fighting fear and fearing failure, that I would write this here in my blog. That I would give my own fully public testimony that I am not ashamed of having a problem with anxiety and I am not ashamed to having sought help,.

What's shameful is that some people will see this declaration as shameful.

I am, sometimes, ashamed of some of the things I do, some of the things I say and some of the decisions I have made. I earned those.

But I am not ashamed of who I am, the path I'm on, and the journey I'm undertaking. The fact that I needed help along the way does not diminish me, it simply makes me fully and completely human.


My name is Dave.

I experience deep fear and anxiety in my life.

(Hi Dave - says most of the world.)

Sunday, May 12, 2013

Elevating Experience of Communication

I was heading over to meet Joe at the Avis care return near us. He'd taken the car and I was riding over in my power chair. After a week in the old manual, it was awesome to be out, to be independent, to be free to wander. It was a bit difficult navigating the sidewalk because, as it turned out, the southbound subway trains weren't running so people were either walking or lining up in huge bunches to ride shuttle buses. Even so, I had fun.

Around the time when we were supposed to meet, I headed over to our agreed upon point of rendez-vous. I took an elevator down to the level of the mall where we were supposed to meet and when the door opened a woman was there, with her husband, waiting just outside the door. When she saw me, she quickly moved her power chair back and off to the side. Like many people seem to be, even me sometimes, they were surprised that, when the door opened, there was someone wanting off.

I pulled out of the elevator and said to her, as she was smiling at me, "Well, now that I'm out of the way, it's all yours!" She widened her grin, let go of the control, and gave me a big wave. It was a kind of nice, brief, chair-user to chair-user kind of interaction.

Her husband, who hadn't really been part of the equation, not because he was purposely left out but because he had moved over to the other side and my back was to him, shouted to me over my head. "She can't talk since the stroke." Her face, which had been smiling, fell. Just fell. She had communicated to me with ease and effectiveness. No, she hadn't spoken, but that was really quite irrelevant.

I turned slightly to see him and said, "I understood just fine."

When I turned back, she smiled again at me and winked. I said, "I know, they're all a bit like that aren't they?"

She stopped stared at me for just a second and then burst out laughing. I laughed too. Her husband, stood staring at us and then said, "I was just an asshole wasn't I?"

She nodded.

Good communicator that lady.

Saturday, May 11, 2013


Yesterday Joe and I spent the morning teaching a group of people with disabilities about abuse prevention. We had a group that came from all over Saskatchewan but more importantly we had a group that really got into the training. The time flew by. Just flew.

And a few hours later we flew home.

The time change and the discombobulation that comes with being here one minute and there the next have hit me pretty hard. Joe and I both got into the Saskatchewan time zone quickly, good for there, not so good for coming home.

We were lucky because we were able to get on an earlier flight home so we were home really late not ridiculously late. Our luggage came quickly but my arms and shoulders are screaming from all the pushing to get through the terminal and over to pick up a car.

All this to say is that these few meagre words with these few bland bits of information is all I've got to give right now, I'll be back tomorrow. I'm going back to bed.

Thursday, May 09, 2013

The Messenger and The Message: In Celebration of CAW

As soon as I heard that this week, from the 6th to 12th of May had been dedicated as Clitoris Awareness Week I just knew I wanted to write about it. I struggled a bit because, I'm a man, and more specifically a gay man. What on earth can I say about the clitoris that would have any relevance at all. But the more I thought about it the more I wanted to celebrate this week. It has it's origins, as one might guess, in pain and suffering which often occasions the female body and harsh societal and cultural practises when it comes to the sexuality of women. I will leave that information to the Wall Street Journal to which I have already linked.

I want to tell you three short stories that involve me and 'the clitoris'.

I was teaching a course at Bishop's University in Lennoxville, Quebec, on the subject of Human Sexuality. It was a wild and fun course. I believe that laughter is a natural part of learning and so ... as the subject was sex, the students were young and hormones flew through the air - it was an exciting ride. We covered a lot of material and the students quickly learned that they would be expected to learn and that some of what was learned was difficult and uncomfortable. On the last day of class a young woman came to speak to me. She was one that I always worried that I was offending because she only seldomly reacted to the humour and when she did it was just with a smile. I thought she was there to complain about my, sometimes, unorthodox approach to teaching. But no, she just quietly waited until I was finished packing up. I'd offered to stop and talk, she insisted I finish what I was doing. She told me, when we sat to talk, that she was terrified to take this course and she took it even though it wasn't a course she needed to take. She had been brought up by parents who, while they weren't religious, they were very, very strict. She had been taught that her body was dirty and that her 'uglies' as her parents called them, were to be kept clean so she wouldn't 'smell up the house.' She cried as she told me this. The pain radiated out of her. Finally, after gathering herself she said that learning words like 'clitoris' and 'labia' and 'vulva' were beginning to have a healing effect on her. They weren't 'uglies' any more. They had names. They were given to all women. They were, and this was shocking to her, no longer unspeakable. She thanked me for filling the class with laughter, she said she felt that each time the class laughed a layer of 'dirty' washed off her attitude towards her body and sexuality. She left me. I sat down at my desk, for about five minutes, and then cried.

It was my second or third time teaching sex education to people with intellectual disabilities. A young woman with Down Syndrome was there. She was attending with her boyfriend who mooned at her with such love and longing. After the second class, where we were still getting to know the group and where we were covering non-stressful material in order to develop trust and safety before we got to the part about body parts and the like, she came to speak to me. I was surprised, in the end, that she chose me because a female teacher was present. But, no, she marched up to me. Determination all over her face. "That's my boyfriend," she said in a "matter of fact" manner. I told her that I had guessed that. "Well then," she said pulling a piece of paper out of her purse and slapping it down on the table in front of me, "What's that called?" She had ripped a page out of some book that had a close up picture of female genitalia and her finger pointed to the clitoris. I told her, quietly, that it was called the clitoris, she turned to her boyfriend, who was waiting with great anticipation, "It's the clitoris. That what it's called. That's what you need to touch more." She walked away. The two of them left the room. Him giggling with embarrassment  her with real purpose. She wanted the word so she could say what she wanted.

When preparing to teach sexuality I read a fact about the clitoris, that it was the only organ in the body that exists for the sole purpose of giving pleasure. I remember reading that for the first time. I remember that fact hitting me hard. I'd had learned, like we all did, that sex was something that was half dirty, half sinful and would occasion or loss of innocence. I knew I was gay for a very long time. I knew that others saw my sexuality as deviant because it produced pleasure not children. And here is this creation, put there on purpose, that said - hey pleasure is OK. It may be odd for a gay man to be grateful to a clitoris, but I am.

It struck me then that the clitoris was more than just a pleasure giving devise.

It was also a messenger.

IT'S SUPPOSED TO BE PLEASURABLE. It isn't supposed to be about force, or about hurt, or about domination. IT'S SUPPOSED TO BE ABOUT PLEASURE.

PLEASURE. Not about demonization of sexuality, not about making sexuality dirty, not about surrounding it with sin and moral statues. PLEASURE.

We have been given a message.

And the clitoris is the messenger of great, good, news.

Wednesday, May 08, 2013

Writing by Request

I'm having a bit of a buzz right now. I know that many of you know that I co-edit  "Service, Support and Success: The Direct Support Worker Newsletter" with Angie Nethercott. We are really trying to get submissions for the monthly publications and have helped several people publish their first article. I've written several and Angie and I have co-authored some together. When Angie and I talk about topics, we tend look look at the issues that direct support workers are facing and then write articles which address those issues with ideas.

Well, I'm doing something very different right now. I had a woman with an intellectual disability come up to me at an abuse prevention training that I was doing. She told me that her staff had asked her to say Hi from them and to tell me they like the newsletter. I thanked her for the message, and told her, truthfully, that the message made me feel good.

"What's the newsletter about," she asked.

I explained that it was to help staff learn better ways of providing service to people with disabilities and better ways to take care of themselves too.

She looked at me gravely, then said, "You should write something to tell them not to say 'no' so much." She nodded to emphasize the point that what she was saying was important.

It took me a few days but when I had some time I began researching how 'no' is used in support giver, support recipient relationships. The first thing I got from that few minutes was that she was absolutely right. 'No' is said way, way, way, too often. And most of time, and I mean this in only this context, 'No doesn't mean no.' Most often 'no' means 'later'. But it has other meanings as well.

So, I'm buzzing because I'm now writing something at the request of someone who lives with service who knows what service she wants.

We've come a long way.

And with people with disabilities speaking up, like she did, maybe we'll get where we are wanting to go, faster.

Tuesday, May 07, 2013

Whiny The Poo

I never want to write about poo again.


I never want to have to talk to a stranger about pooing again.


However, for me as a wheelchair user, I find myself talking about poo with disturbing frequency. We stayed at a hotel downtown yesterday because we couldn't get into the hotel where we are staying the rest of the week due to their accessible rooms being fully booked. We decided that we wanted to come a day early to acclimatize to the time zone and just generally relax and get ready for a busy week.

The hotel downtown said, in answer to my question about accessibility that "yep, sure, no problem" the room would meet my needs.

It didn't.

I was lulled into a sense of trust by the peephole in the door. That usually means we're going to be OK. So, foolishly, or maybe because I was tired, I didn't look in the bathroom. By the time I did, it was too late to look for somewhere else. There was problem after problem after problem with the room. I could pee but not poo. I couldn't shave. I couldn't shower. My response was automatic and, in the situation, really appropriate: oh shit!

My bowels are well trained. They know what to do and when. So, early in the morning, I had to wake Joe up, we had to get dressed, we had to go down to the lobby, into the bar, push several chairs, which were blocking the washroom, out of the way and finally we made it to where I could poo. Then, we made our way back upstairs. Now wide awake. Now with no hope of going back to sleep.

Did I complain?

Of course I did.

Did they respond?

Yes, they did.

But, really, I'm as upset about having to talk about pooing with yet another stranger as I am about everything else. I wonder if non-disabled folk understand what an incredible privilege it is to just know that where ever they go, they will be able to poo when they want to. I wonder.

Because for me the sudden intrusion into what's essentially a private thing is becoming routine. Regular. I'm losing a bit of my embarrassment about this particular discussion. I get, now, why so many people with intellectual disabilities have no boundaries regarding what are appropriate topics of conversation. When you have private things discussed, private becomes public ...

So, I want a whole year or two without ever having cause to write a blog about poo or pooing. I want to never have to talk to another manager of anything anywhere about ca ca or ca ca-ing.

I'm in my new hotel now, I've already tested the toilet, on and off ... I'm good.

I want every hotel to have, in their discussion of serving the needs of disabled  travellers a sign that says.

Accessible Toilets:

The room

Couldn't be clearer could it?

Monday, May 06, 2013

Disability Studies: Field Trip

Sitting waiting to check in, I got served several slices of life. Air Canada at Toronto's Pearson Airport, has a separate check in for passengers who need 'special assistance'. They have several wheelchair symbols over several check in stands. Flying Sunday was mad with passengers everywhere, most seeming confused. Joe got in the line up after sneaking me through the flex barrier so I could wait quietly. It seemed to make more sense that me going all the way round to the entry point.

So, I got to see:

A man and his wife sitting waiting. They'd already checked in and were waiting for someone to assist them to the gate. His wife walked, painfully, using a cane. She was getting frantic for getting to the gate, worried about missing her plane. They kept reassuring her that she'd get there and that they were getting people to where they were going as quickly as possible. Finally someone came, brought her a wheelchair and when they started the husband walked along side. "Are you travelling with your wife, sir?" he was asked. He said that he was. "Would you be able to assist her to the gate, now that she has the wheelchair, as you can see we are a bit overwhelmed today." He angrily stated that it wasn't his job to get his wife anywhere. And they were gone.



Later a group of young teens came in, same way I did, pushing a cart piled with luggage. They flopped down on some benches. One of the staff asked them if they needed assistance, "We're here with our Gran, she's in the line up." Now, Joe stood for me in the line up and here are these young people lounging around while a very elderly and very unsteady woman stood in line. It was a long line up but every single person saw that she was unstable on her feet and let her move ahead in line. She thanked them for watching her bags, two complained that they were bored.



An elderly man, who had been accompanied by a translator, probably two generations younger, and was leaving the gate being pushed by one of the staff. The translator asked the harried staff, they really were busy, if she could take a second more to say good bye and reassure him that he was going to make it to the flight. "He's been really worried all morning," she said. The Air Canada staff, stopped, said, "Please, go ahead," and calmly waited a few seconds for them to speak. He grabbed out and held the hand of the woman translating for a second, smiled, and they were gone.



Finally Joe was up front, we were checked in. We decided to go without assistance as it would be a long wait and between Joe and me, we thought we could do it. We did. I found a long portion of the way I was able to go along side a wall that had a hand grip along it so I could quickly pull myself along. There is also the escalators where I can hold on to the moving handhold and let it pull me along side. We've done this before, we know the tricks.

I was going to read on the plane but I thought mostly about my time there. It was like an intensive 'disability studies' class. I'm sorting through what I learned but I did realize that the disability experience my be most largely determined by those you have around you. Husbands, wives, grandchildren, staff and other care providers. I wonder about how some of my fellow disabled travellers did on their trip, some of them I worry, a bit, about what happens after the trip is over.

Sunday, May 05, 2013

Any Day Now ...

I ordered this film a week or so ago. It's been sitting on my desk, waiting for the right time to watch it. I knew, from the trailer, that I would need uninterrupted time to watch it and space to deal with the power of the story. I was right. We watched it Saturday morning, early. It's a hard film to watch. The performances are wonderful, all three men embody their characters and are all intensely likable people. I never promote products on this blog (I don't think I do anyways) but here I'm going to make it easy ...

for Canadians ... any day now at

for those in the UK ... any day now amazon uk (warning this requires a region 1 or multiregion player)

for those in the US ... any day now at amazon us

for those in Australia ... any day now Australia

Sorry, for those in other countries, I've failed miserably. I've added Australia after a comment from John.

Anyone from anywhere else, please let me know the link and I'll post it.

Warning: hard film to watch

Proviso: important film to watch

PS I believe it's important that we in either the disability community or the LGBTQ+ community support our story-tellers.

Saturday, May 04, 2013

Getting Ready

It was a long week, lots to be done, lots to be accomplished all mixed in with unexpected surprises, some good, some not so good. Today is a transition day. We prepare for a week long trip to Saskatoon. On the one hand, we both love Saskatoon. On the other hand, we've got to get there. That means airplanes and airports - always a gamble at best. Sunday, early morning, we begin the process of 'getting there.'

This is where it is clear that the physical aspects of travel are not the problem. We know what to do, we know how to make it work. Trouble is, we need some assistance to get it done. This shouldn't be a problem because their are people who's job it is to help us with this. You'd think that, as their jobs depend on people with disabilities travelling they'd want people with disabilities travelling.

And many do.

Some greet us.

Some ask us what type of assistance we need.

Some help us because it's what they like to do.

But some don't.

Some seem to think it's their job to look helpful - not actually be helpful.

Some seem to think that their training gives them the right to look at us and determine, from a professional 'once over' scan what it is we need ~ and give us that, rather than what we need.

Some seem to think that their certificate in 'airport' helping out gives them medical expertise and the right to ask intrusive questions about things that are none of their business.

Some seem to be bothered that we've interrupted their conversation on their cell phone.

The process of travel involves the process of putting one's self at the mercy, first of chance, then of another's 'care'. That gets harder and harder for me to do. Joe, too, said yesterday, "I wonder who the Airport God's, in their infinite mercy, are going to send to help us?" Again, it's not the disability. It's not the mechanics of the trip. It's the attitudes and the personalities of those we will encounter from arrival at the desk to being seated on the plane. That's the issue.

So we've decided to go see a little film out of Norway called Kon Tiki just to remember that, whatever happens, we'll be in a seat on a plane, not strapped to a balsa wood raft. We're assuming a better trip.

Friday, May 03, 2013

The Walk Home

she saw them
i saw them
at the same time

he and he walking
side by side
hands brushed

accident turned to design
fingers touched fingers
two became one

her stare became hard
her mouth set
she spat at them

she saw me see her
she pointed at them
face wrinkled with disgust

she included me in her glance
assumed that I would
be an ally to hate

i whispered to joe
his hand moved and rested
lovingly on my shoulder

it matters
that you declare




the men having felt
the sting of her stare
the force of her hate

saw joes touch
felt our solidarity
knew they were not alone

it matters
that you decide


Thursday, May 02, 2013

Blogging Against Disablism Day: A Day Late / Right On Time

We'd finished two of the three short pilots and were out in the neighbourhood taking a look see at what accessibility was and what it wasn't. I pointed out a couple of instances of 'steps in drag' as I call them. These are where a store puts an impossibly steep slope on a step so that they can claim accessibility without offering it. This is frustratingly common. We looked at the difference between a good curb cut and a bad curb cut. We filmed how street construction can leave a road fixed but a sidewalk completely impassible. Good stuff but a little uninspired.

Then on the way back we were stopped the camera was on me and I was talking. I noticed a man, a little younger than me, in a power chair, stopped, looking back at us to see what was going on. I said something, he nodded so I invited him over. We then had a nearly ten minute chat about accessibility and what it meant on a practical level. I think we both forgot the camera and spoke with each other, comparing stories, giving examples, swapping tales. We were, by appearance, as different as could be. He'd shaved his head and replaced his hair with a stylized tattoo. He had huge metal earrings which reflected the sun as we spoke.

Afterwards we all chatted about how wonderful that was and what good viewing it would make. I agreed. I thought the conversation was wonderfully sparkling. But something more. I had moments of deep connection. It was wonderful to talk to someone who lived in the same neighbourhood, who experienced the sidewalks and the curb cuts the same way that I do. The reason I forgot the camera was because I have a deep need for these community connections - connecting in my community - and when they happen, other things become secondary.

We did a couple other shots after that and we were done.

It was a fun day.

Everything that was planned went off well.

But it was what was unplanned that was brilliant. The disability community is an interesting thing isn't it. Two people can be wildly different from one another but still have a place of connection. His conversation made the issues that I had raised earlier real. He, just by being there chatting with me moved what I was saying from an idiosyncratic experience of the world to a shared set of experiences.

At a moment when I needed community, it was there. I think he knew what was going on and wanted to help out, wanted to ensure that our voices were heard.

Gad, I love this community some times.

I got home and realized from a comment by Andrea that I'd missed BADD - I decided I'd join in, a day late. BADD is about community and I'd just had the experience of community.

BADD I'm in.

Wednesday, May 01, 2013

Notice! and Update!

Notice: This month's Direct Care Newsletter has been mailed out. If you didn't get it, it's not coming. The article is on 'getting back to normal' ... understanding how life stressors affect people ... and how diagnostic overshadowing can have us missing the obvious. So if you want to subscribe, send a brief email to

 Update: What's Happening Today

I think I've mentioned that a web based television station has asked me if I'd be willing to consider doing a show on disability issues. This isn't a political show, it's kind of like this blog come to life. Thoughts, ideas, information. I was taken aback at the interest, sent them links to see me on line - wanted them to know exactly what I looked like before they spent money sending cameras and all the rest to shoot the pilots.

Today the television crew comes in to our home and we begin filming the three short pilots (of about five minutes) that will be used to see if the station can get some sponsors for the show. The process of getting to this point has been quite painless and exceedingly well organized. I've decided to apply my rule for writing to what's going on today. Long ago I got very depressed, and felt really rejected, when something I'd written and submitted to a magazine or journal wasn't published. Those cold letters thanking me for my interest while expressing their lack of interest were so lacking in explanation as to be torturous. The letters flowing through the mail slot in the door with the 'thanks but no thanks' surrounded me with a river of rejection. I knew I was going to quit trying to write - then I switched my attitude. My job was to WRITE the article. That was it. I was successful every time I put it in an envelope and sent it off. My job was done. The acceptance or rejection was out of my hands, our of my power - so let it go. At least I got something in front of them to read. That's what a writer does, Write and submit. Publishers and editors do other things.

So today. I'm just going to do the best I can. I'm going to enjoy the experience - after all how many times will I ever have this opportunity? I'm setting the goal of getting it done and getting it out into the world. That's all I can control, so, that's all I'm worried about doing. They arrive here at 9:00 and we'll be going from there.

This may be the birth of a whole new adventure or it may be a great story to tell around the table at the pub. Either way it goes, I'm cool.