Sunday, January 31, 2016

Today and The Doctor's Question

Image description: A yellow happy face missing its smile is looking over to see it's smile beside it.
Today I'm having my birthday party.

It is not my birthday.

My birthday on the winter solstice, which is not a good day for a party for us non-druid types. The season was just so busy and there was so much to do and my chair had just broken down and the scooter doesn't go to the same places ... there were a lot of reasons but we decided to postpone the celebrations.

So.

Today it is.

I was telling someone this and they asked if it bothered my that my actual birthday went without notice and that I'm celebrating so long after that date. I pointed out that my birthday didn't go unnoticed. I got phone calls and happy birthdays and my Facebook page filled with greetings and well wishes. So both in the real and in the virtual world, the day was marked. This is just the gathering. So, no, it doesn't bother me. I get to celebrate my birthday and the end of January, at the same time.

I will have a burger served at our local.

I will sit next to a jute box.

I will get a cake made by children.

I'm happy.

On Friday I had to go to the hospital as part to see a doctor as part of my continuing maintenance of the best health I can given the disability I have. I'd not met this doctor before and when he came in I was shocked at his youth. He was very young. He was quite handsome. He was very suave in his manner. We were very different people. I introduced him to Joe, my husband, to clarify why he was in the room with me.

Then he asked me questions.

He if I worked.

I said that I did.

He glanced over at me, seeing me a little differently than before.

He asked what I did for a living.

I told him.

He paused and said, 'Good for you.'

I wasn't sure why he said that but I said, 'Yes, I have a good job.'

Then his pen stopped.

He put it down.

He turned to me.

And asked a question.

'Are you happy?'

I don't know if I've ever been asked that question by a doctor before, but it immediately struck me as a very good question to ask. I paused myself, for a moment to think, I'd not been asked that directly in a very long time. I thought through the last couple of months, I'd been really busy and really stressed with deadlines and things to do. I brushed that aside - that's just how we live these days. He just sat there and waited.

'Yes,' I said, 'I'm happy. I am loved and valued by others and I love and value myself.'

The second part of that sentence was difficult to say out loud. I didn't want then, and don't want now, to sound conceited. But I believe that happiness begins inside ... people say you need to accept who you are ... I don't believe that acceptance is enough.

He looked at me, nodded, turned back to his notes.

At the end, he said that he had all he'd learned all he needed.

I thought to myself, 'So did I.'

I was glad to have been asked that question.

And it's one I'll ask myself, occasionally over the next however many years. Because I want to live happy, so I need to check in to see if I actually am.

Saturday, January 30, 2016

Let The Good Times Roll

Image description: A mylar balloon with the words 'Weclome HOME' in large type in the middle over a bursting out graphic.
It's home!

It's working!

I took my first real spin in my power wheelchair yesterday. Up ramps, down ramps, round corners, through narrow passageways, I put it through it's paces. Everything was working fine. Driving takes a lot of concentration because I have a new joystick, and no two are the same which means I have to learn the eccentricities of this one.

But.

I am fully mobile again.

It's been about a month and a half since I've had full mobility. I feel giddy with opportunity.

My experience of my disability, I realize, to a certain extent, depends on the level of access I have to my world. I realize this because my mobility was curtailed over the last several weeks but also because of some of the comments I've had when I've written about my chair and about how restricted I felt using an old scooter. Even in my scooter, my access to my world outstrips many whose mobility is reduced or eliminated by lack of appropriate mobility equipment or support.

The 'right' to access comes before the 'right' to accessibility.

I also had a discussion with a young woman with an intellectual disability who lives in a 'family style' placement along with her brother who also has an intellectual disability. She complained that he has access to the community, can go where he wants, can travel the transit and though she has the same travel skills, she isn't allowed to go out. Her gender and her disability, according to her house parents make her 'perfect prey.' She imitated her mother's voice perfectly when saying that phrase. Access, denied.

Today I'm going somewhere that I've not been able to go since mid December. I'm excited. But I'm also aware of the privilege that I have - I've got the means to access my world and I don't have anyone telling me I can't.

I feel lucky.

But I shouldn't.

Because it's not okay to live in a world where those who don't have mobility and access are blamed for being cursed with bad luck rather than restricted by meanness and power.

Friday, January 29, 2016

Barbie Turns Back On Becky: Is Barbie a Bigot?

Barbie
Original Image Description From Source: Iconic doll character Barbie is getting a full-on diversity makeover for 2016. (Image source: www.pinknews,co.uk)




I've probably read more text about Barbie than about any toy ever created. I've heard her name in deep and serious discussions by Feminists. I've chatted with mothers who were frustrated at their childs's desperate pleas for a Barbie, when they'd vowed never to buy one for their children. Barbie is part of our cultural zeitgeist. I admit that I even own a Barbie, well not actually a Barbie, but a friend of Barbie's, Share a Smile Becky was the first wheelchair doll I'd ever seen. No matter what she had been named, to everyone I knew, and this was long before I became disabled myself, she was known as Wheelchair Barbie.

Image description: Share a smile Becky sitting in a pink wheelchair. (Image source: latest-wrinkle.com)
 So when I heard that Mattel was going to make huge changes to the line and make it more diverse, I was pleased and even hopeful, that 'diverse' actually meant 'diverse.' Here's the statement, from an executive at Mattel, Ms Mazzocco, that I read: “We are excited to literally be changing the face of the brand – these new dolls represent a line that is more reflective of the world girls see around them – the variety in body type, skin tones and style allows girls to find a doll that speaks to them."

Then I saw the picture of the new Barbies. It is clear, instantly, that there isn't a doll with a visible disability of any kind in amongst the bunch. Barbie had clearly dumped Becky, no matter how much she smiled, Becky. Is Barbie, and I can't believe I'm asking this question, a bigot? That's bad enough but let's take a look at some of the statements made:

First, Ms Mazzocco, said that the dolls were 'more reflective of the world girls see around them.' It is clear that Mazzocco imagines a world where disability doesn't exist and that children live in an exclusionary world where none with a disability dare enter. It angers me, deeply angers me, that Ms Mazzocco, presents to kids a world view that disability isn't welcome.

Worse, Mazzocco says, that the dolls 'allows girls to find a doll that speaks to them.' Hmmm, I guess kids with disabilities aren't customers or don't want dolls. Or is it instead that Mattel believes that children with disabilities don't deserve dolls? Has Mattel reintroduced the 'ugly laws' in dolldom? I'm guessing so, because she went on to say: "We believe we have a responsibility to girls and parents to reflect a broader view of beauty," So, neither 'diversity' or 'beauty' includes disabled children. Nice!

It's a hateful act. They know how to make a doll in a wheelchair so a white cane or a guide dog shouldn't be out of their range of expertise. Would a doll with Down Syndrome be that hard to make? Why not just say MATTEL MAKES DOLLS FOR NON-DISABLED CHILDREN EXCLUSIVELY, and be done with it.

But they expect us to either not notice or not do anything about it.

I want to make something blatantly clear to companies, to newspapers, to writers of books and stories. You can't freaking use the word 'diverse' if it doesn't include us. We are part of diversity and without us it isn't diverse - it's exclusionary. We are massive in number, we are part of this world and this society and don't you dare use the word 'diverse' if we aren't there.

It was difficult to find who to write at Mattel, Mazzocco's email address no where to be found. In fact the only email address they give out is for the press, so that's where I'm sending this blog. Some of you may also wish to write. 

The only email on the Mattel webpage was for the press, I wrote there and recieved this response: If you are looking for more information on today’s Barbie announcement, please visit the Barbie Media site at BarbieMedia.com, which includes the press release, product fact sheet, downloadable images, b-roll, etc.  For more Barbie information contact Michelle Chidoni (michelle.chidoni@mattel.com  or Marissa Beck (marissa.beck2@mattel.com ). Which, of course, I've done. (The reply email also posted their phone numbers, I never post phone numbers on this blog.)

Thursday, January 28, 2016

Dis-Missing Me

Image description: On a cork board a note is pinned. On the note is a smiley face under which is the word 'disability' with the dis cross out.
There is a sentiment that I'm hearing more and more often about disabilities but never actually said by someone with a disability. I know what the speaking is trying to say, and even that knowledge doesn't eliminate, or even reduce, my deep, deep, discomfort whenever I hear it. It has several versions:

... one day there we will live in a world where there is no such label as disability.

... in the future, with full accessibility, we will eliminate the whole concept of disability.

... it is my hope that there will be a time when no one even knows what the word disability means.

Whenever it's said it is in the context of the world becoming more accessible and welcoming to people with disabilities, a world where employers hire talent regardless of tires, a world where full participation is simply the norm.

These are lofty goals. People need to live in a world of welcome and access - all people, not just disabled people. But can we talk about these goals that that world without simultaneously speak of the elimination of disabled people.

I KNOW THAT'S NOT WHAT THEY ARE SAYING.

But it is what they are saying.

Let me tell you that in a world with both ramps and stairs, I'm always on the ramp, never on the stairs. I will always live a reality that is shaped by my experiences and my experiences will always be shaped by my disability. Now here's the thing, I think that's a good thing. I think one of the reason why people with disabilities are valuable is precisely because of the perspectives and points of view we have. We see and experience the world differently. That's good. Isn't it?

I don't hear people suggesting that an end to racism will eliminate black people, or an end to homophobia will eliminate the need for the word gay or the LGBTI community. In fact, many might even shudder at that kind of discussion.

History has it's lessons.

But as 'disability' the word, and 'disability' the concept, and 'disability' the lived experience aren't valued, the idea of 'elimination' comes easily. Way too easily.

I too wish for a future with full access, full participation and the sense of welcome, but I do so as a DISABLED person, not as a person who wants my identity and my point of view and my voice eradicated.

Wednesday, January 27, 2016

The Hearse At The Bottom of The Driveway

Image description: A bright red hearse with white drapery over the two back windows.
I thought my life was over.

I thought I'd lose everything I had and everything I'd worked for.

I had no where to turn.

No one to talk to.

I had faced illness, even death, before but nothing prepared me for this. When I was battling the flesh eating disease I was surrounded with support and caring and concern and help and family and friends and community. I felt embraced. I felt included. I felt valued.

But, I didn't feel that this time.

I felt alone.

Completely.

It had come upon me slowly. So slowly that I didn't really notice it at first. I'd be out in the mall or for at a movie or at a party with friends and I'd have this slightly unreal moment when I was suddenly filled with panic. I brushed it away, telling myself, I just needed to take a breath, get some air, and I'd be fine. And it would work. Until the next time.

The next time I'd have to brush it away a little more firmly, I'd have to take several more breaths. I began to worry that my strategy would one day not work.

And I was right.

It didn't.

My world collapsed. I was about to start an ordinary day doing consultations. A family was waiting in the waiting room, they looked to me coming down the hallway, expectantly. My heart stopped. My breathing stopped. My world went black. I dashed into an empty office, stumbled towards the desk and held on to the edges of it as tightly as I could. I thought I was going to die. Right there. With people waiting.

I couldn't move forwards.

I couldn't move backwards.

In a panic they called Joe's cell.

He came and got me and brought me home.

I told myself more lies. I was just tired. I was just overwhelmed. I was just taking things to seriously. None of them worked. I knew them for what they were, words of denial. I had a week before I had to go back on the road. This was the time before disability, when I travelled alone. I had to be on air planes and in taxis and on stages. I couldn't imagine doing any of them.

After a day of rest, I couldn't leave the house. I was convinced that if I left I would die. I would fall over and die. I was immobilized by fear in a way that I have never been immobilized by my physical disability. I was stuck.

It was time for some truth.

For some reason I'd lost reason when it came to fear.

It didn't matter that I didn't know why.

It just mattered because it mattered.

I went to see my doctor. She listened carefully. She wanted me to do a couple of things, one of them was to try an anti anxiety. The other was to develop some cognitive strategies to deal with my anxiety. I began the prescription the next day. Two days later, I could leave the house without the expectation of a hearse at the bottom of the driveway. At the end of the week I was on a plane.

It wasn't over.

The pills helped me cope.

But then I adapted a technique called stress inoculation. I don't know who invented it, but for me, it was a lifeline to taking control of my life again.

Now, years and years and years later. I still use the anti-anxiety pills about half an hour before a lecture and I use stress inoculation maybe ten or fifteen times a year. I'm good.

But I remember when I wasn't.

And I remember how it seemed like I couldn't talk about it.

I could talk about disease.

I could talk about death.

But I could not talk about fear, about depression, about anxiety.

I could lecture about advocacy.

I could lecture about self esteem.

But I could not even think about being public about having had to face a significant mental health issue.

I feared that I'd lose ...

everything.

That people wouldn't book me to lecture.

That people wouldn't trust my judgement.

The people wouldn't feel safe in my presence.

And you know THOSE fears are real.

They aren't like the phantom fears that plagued me. These fears are the fears that everyone who faces mental health issues have to deal with - to just be honest about who they are. It's odd that in an era where 'over-sharing' is common-place 'real-sharing' isn't welcome.

Today, January 27th, in Canada is Bell's Let's Talk day. It's a day where we, as Canadians, are asked to challenge stigma by breaking silence about mental health issues.

I understand the dangers of silence.

I could have lost my life.

But didn't.

Because I reached out and spoke up which enabled me to get help.

Please, break the silence today.

***

On that note I will remind North American readers that Vita Community Living Services along with Hands the Family Help Network and the National Alliance for Direct Support professionals is hosting a 'Let's Talk' webinar featuring Dr. Yona Lunsky (a personal hero of mine) who will be talking about mental health and people with intellectual disabilities from 2 to 3pm EST. There are a few spots left so register right away if you are interested by clicking on the link.

Tuesday, January 26, 2016

The Right Kind of Privilege

Image discription: the word privilege

Joe and I were waiting for Marissa and the kids to catch up to where we were. We had just finished seeing an exhibit at the Royal Ontario Museum. As we waiting I noticed a man going by in a very cool looking scooter. He caught me looking, stopped and rolled over to me. I told him that I was admiring his scooter. He laughed and said that a lot of disabled people notice it.

As he told me about it, how it could be broken down so that it could fit into a car, three young teenagers, who were somehow attached to him, stood behind and waited, comfortably while he talked with me. He was a big man, but he carried his weight differently than I do, so his weight made him look imposing, mine simply makes me look fat.

He then, out loud, started talking about the model of the scooter was the companies bariatric model and was made to carry a significant weight. He said 'bariatric' like it was simply a word, not a horrible judgement. I'd never heard the word ever used in conversation, in public. I don't think I've ever heard it said out loud before. Even when talking to the people who I buy my wheelchair cushions from, they whisper 'bariatric' as if it's an incantation  or a curse.

He gave me info on the scooter, drive medical's phoenix HD4, so that I could look it up and consider it. I had told him that my wheelchair had broken down and that I would need something new. The chat over, he said goodbye and wished me well, the teenagers nodded, and they headed off.

One of the things about having a disability is that I get to meet some of the most unutterably cool, dignified and proud people rolling on this earth. What a privilege. The right kind of privilege.

Monday, January 25, 2016

Assessment Time

Image description: The word ASSESSMENT behind a magnifying glass.
Early and anxious. That's how I woke up this morning. Joe too is jittery. He's made sure that the place is clean and orderly. I helped with that as much as I could. He's driving the girls up to school this morning and may not be here when they get here.

Who are they?

They are, cue frightening sound effects, the assessors.

They are coming as a result of the breakdown of my power chair. As I've had it for several years and as the problem seems simply to be that the chair is worn out, it's travelled thousands of miles, across several provinces and states, up and down ramps and hills. It's well past the 'due date' for a new chair and they are coming to assess me again.

I went through this the first time. Now, I have to go through it again. It was uncomfortable the first time, it's going to be again. I have learned something. It doesn't get easier and the feeling of intrusiveness doesn't go away.

Understand I'm not complaining about the behaviour of the person last time or expecting unprofessional behaviour this time, not at all. It isn't the person, it's the process that's really the issue. It's something both they and I have to go through. It's the dance.

Here's the thing that I thought about this morning as I was in bed anticipating getting up and officially facing the day. I am very comfortable being the assessor, I am not so comfortable being the assessed. This is probably no surprise, a position of power changes everything.

Absolutely everything.

Last time I went through this, I know I learned things.

This time I intend to be much more mindful of how it feels to be on the other side of the magnifying glass. I intend to be much more sensitive to words, and tones and manner. Not because I want to be critical of a person, but to be aware, really aware of our roles.

I have an opportunity to learn.

And I'm going to take it.

This won't make this easier, but it will make it a more valuable way to spend morning.

Sunday, January 24, 2016

$20 In Flight

Photo Image: A Canadian 20 dollar bill, front and back.
I handed over my shopping bag to Joe and he handed over a $20 bill to me. It seemed a fair exchange. We've arranged it so that when we go shopping, Joe gets in line to pay for the groceries and I head over to check our lottery tickets at the machine just outside a small convenience store. Joe's not fond of checking tickets like that and I'm good with it, along with enjoying doing it, it feels good to be doing something that needs done and knowing that because I do it, Joe doesn't have to. He does so much for me, it's nice to be able to reciprocate.

There was noise in the food court as I came out and I saw immediately that a group of teens were taunting one of the homeless men that we see often in the area. As I went by I was able to hear him and the words he spoke were full of anger, and humiliation, and rage at himself for allowing himself to be tricked again. In other words, his voice wept.

The kids had got him to come over with promises of money and after making fun of his clothes, his smell, his cleanliness, which he took, waiting for them to give the money the promised. His anger burst when they handed him coupons for groceries at the store I'd just come from. He realized he'd been tricked and humiliated and made a fool of and he expressed that loudly.

The machine was without lineup, which was unusual, but then I noticed that a lot of people were watching as the security guards had come to escort him out of the area. The teens, the real bullies, the real offenders, sat where they sat and looked completely satisfied with the result.

The security was herding the man in my direction, which was towards the subway. This made sense. It was bitter cold outside and it would be safer and warmer for him to ride the trains. I didn't turn to watch, he was already on display, so I turned to my task. I stuck my hand in my pocket to grab my glasses and as I did so I accidentally pulled the twenty out. Canadian money isn't made of paper and it can, and did, take flight. There was a constant breeze by where I sat due to the door from the subway opening and closing constantly. The bill flew, as if by its own will towards the homeless guy who reached up and grabbed it.

He broke from the security guys who were steadfast in their determination to see him out of the building and onto the subway. It was only a few steps over to me, and he ran them, puffing. He reached over and handed me the $20 bill and said, "You dropped this." I took it, surprised by the quickness of his movement and noticing the presence of the guards as they stood and watched. I said, "Thank you, thank you so much." He smiled at me, nodded, and said, "Best take better care of your money!" I laughed and said, "I will." And he was gone.

I knew, from the moment that the twenty landed in his hands that he needed that money way more than I do. I don't want to pretend here that 20 bucks is a piddling amount in my life, we are a family whose income has been affected by my disability and money is, well, money. But even with all that, he needed it more than I did.

So, why didn't I give it to him.

I wanted to.

I really wanted to.

It would have been so easy to have been charitable. But in my heart, no deeper, in my soul, I just knew that he didn't need charity at that moment. He needed to be treated respectfully, and gratefully, by another human being. He needed to be the giver, he needed to be the helper, he needed to show everyone who he was. He needed to smash their stereotypes of who he was as a man and as a person. At least, that's how I saw it.

So I let him be kind to me.

In doing so, I let his act of kindness be an antidote to the cruelty that had filled that food court.

And it was. Those that watched, save the young people who were no longer interested in their victim, were shocked at his action. They saw a man who needed money desperately, honestly return money to someone who dropped it. Their faces showed first confusion and then, in a few cases, realization.

Advocates come from all communities.

Advocacy takes many forms.

Activism changes things.

The ultimate result: Travelling from humiliation to humanity in a single moment.

Saturday, January 23, 2016

Proudly Proud

Every now and then I meet someone, or hear a story about someone, or see something on social media about someone whose story makes me really proud.  I want to be clear about the word I'm using. I'm using the word 'proud' not the word 'inspired' because they are different words with different meanings.

Let me give you an example, many years back, when I was in my teens, I picked up a magazine that had a story about an out gay couple. It was clear that these two men took a huge risk to be out, to be public, but they did so because they wanted to reach kids like me. Kids who would read the magazine, in secret and then store it, for year, to be read a thousand times over. The concept of 'Gay Pride' wasn't around back then but 'Gay Pride' is what I felt when I read the story. I was proud they were my 'kin.' I wasn't 'inspired' by them, I was proud to be like them, to know that there were people like me, other 'sissys' other 'faggots' other 'poofs, and pansies, and powderpuffs' who had courage to be who they were publicly.

I do this because I'm about to show you a story about a guy who just made me feel wildly proud of being in a community with him as a member and I want to be clear that this is about pride in membership, not about 'inspiring the normals'. It's like if he was in a disability clubhouse, I'd be shaking with delight just to see him across the room, sharing the same space with me. Being proud to be disabled, to be a member of the disability community is still such a new concept for a lot of people - it isn't new to disabled people, though we've had the language of pride for considerably less time than other minorities, we've still had it. And like other minorities, we've had out and proud disabled people from the beginning - they just weren't ever acknowledged.

Anyways, here's the television clip that I saw this morning, pasted on social media, that made my heart swell with pride. This guy is OUT, and powerfully so, as a disabled person and makes me feel proudly proud, well, you'll see ...


OK ... tell the truth, did this guy just up the cool factor for being in the disability clubhouse?

Friday, January 22, 2016

Voices Out of Turn and Without Permission

Image Description: A park bench with a brass coloured plaque reading: This bench is reserved for the young, beautiful and affluent. If you are old, ugly or poor please sit elsewhere.
A couple of days ago the controversy about a particular gravestone placed in memory of a child with a disability by their family entered into public discussion again. You may remember that I wrote about this gravestone (as art, not as a memorial and certainly not about the family who lost their child) before. The sculpture showed a child rising out of their wheelchair and returning, whole, healthy and non-disabled, to heaven. Predictably, perhaps, I don't like the ideas behind the statue and in fact feel that some of the sentiments that the art raises are dangerous. I felt that I had a right to comment.

My sense that I had a right to speak about this, from a disabled point of view, was confirmed when I saw this image all over social media with all sorts of people commenting. Mostly, people loved it. Really, really, loved it. And they said so, loudly. They spoke of a 'loving God,' of an 'end to suffering,' of the 'release of the body from disability,' for starters, but others were bolder in saying that the death of this child was ultimately a good thing because they would be whole in heaven and that the family could get on with a life unburdened.

So.

Lots of chatter.

Enter the disability community.

I was not the only blogger, by far, to write about the art and what it represents from a disability perspective. Everyone was very careful to talk about the art. Let's review. The statue was placed in a public place and then discussed in public space. As a result of the commentary around the statue by, primarily, non disabled people, who, predictably, loved it we spoke of what the statue means to those of us who live with disability and the resultant, 'I'd rather be dead than disabled' comments which are whipped out to slap us across our reality on a fairly regular basis.

Yesterday, on one of the discussion threads about this, someone tore into people with disabilities who were commenting on the pictures, saying we were bringing a particular political agenda to the discussion and that HOW DARE WE CRITICIZE HOW SOMEONE MEMORIALIZES THEIR CHILD. They were wild with upset.

OK, let's agree with something.

Most of us commenting on this statue and other similar artwork do have an agenda and a particular political point of view. Being disabled isn't just about disability it's also ultimately about politics. Going out to a restaurant can be a political act. Living 'out' and being 'out' while 'being disabled' is a challenge to how many see the world - trust me with wasn't the hand of a disabled person that wrote the ugly laws.

Now, let's agree with something else.

Non disabled people, who love this statue and gush over it's lovely sentiment, have an agenda too. They have a political point about disability too. These aren't just benign comments about a portrait of sunflowers. These are comments on the statement that they see the statue making about disability. The have given themselves permission to speak and scream when we speak, as they see it, out of turn and without permission.

But their voices are welcome.

Ours are not.

We are told we are disrespectful

We are told we have agendas.

We are told that we are using the death of a child to further our cause.

We are told to SHUT THE FUCK UP!

Unless we agree of course, then we are welcome into the mob.

Well, I believe that, even if it upsets people to hear what we have to say. We need to say it. We need to challenge, every where we can, the idea that disability is transcended by death and that death leads to release from the bonds of disability.

The image of people with disability as a polite, meek and grateful community is simply not true. The only way that people will learn that is when silence is shattered and our voices shout over the slow and steady murmur of 'death to the disabled' that thrums through society.

Thursday, January 21, 2016

Made To Measure

Image Description: A close up picture of a yellow strip of measuring tape.

Joe was busy measuring the width of my manual chair here at home while we waited for a woman to measure the width of a door in a training centre north of us. This all happened because I was due to attend training the next day in a room where a fellow staff member of Vita had just taken the day before. She called me to tell me that she thought a turn was really sharp and that the door might be a little narrow. "It might be best if you call them and check it out."

I thanked her and got on the phone.

When I called I spoke to the woman who's organizing our training there, she said that she'd head down and measure the door. As it turned out, there was plenty of room for the chair to both make the turn and clear the door.

What was great though was, even though I hadn't said anything, I always worry about the accessibility of any new place that I'm going. I worry even more if I feel I could be professionally embarrassed by having to deal with doors and wheelchairs and corners in front of people that I work with or people I am training. I don't like THAT kind of attention drawn to me - it's not the kind of entrance you want to make into a room.

So call or not.

I was concerned even though every piece of paper said that the site was accessible. I'd already had the person registering me ask questions about the bathroom, it was, they said accessible.

The call did it.

It was all checked out, I was good to go.

It was only later that I wondered why I needed someone to express concern about the accessibility before I called. I mean I had concerns about the accessibility, why wasn't that enough.

I think it was because I didn't want to be a bother.

But it was not bother.

And I was able to sleep without worrying about the next day.

I'm going to just do that from now on. I do it with hotels, I do it with lecture venues, why I haven't been doing it for work events I don't know.

But that's changed.

Oh.

And.

I got in just fine.

Blog Update: Canadian and American Readers Take Note



Image description: The Bell Let's Tall logo. A smiling face with a comment box over the upper right forehead with the words Bell Let's Talk beside the logo.

January 27th is Bell’s Let’s Talk Day … it's the perfect day to speak about mental health and people with intellectual disabilities. To help foster, or even start, this conversation Vita has partnered with The National Alliance of Direct Support Professionals, an American organization to break down boarders and present a cross continent discussion featuring Ontario’s own Dr. Yona Lunsky. This free webinar requires only a computer and speakers and is available straight across Canada and the United States.

The discussion will be framed around Dr. Lunsky’s new article, to be published on the 27th, on mental health and people with intellectual disabilities. If you want to receive this article on the morning before the presentation, please email dhingsburger@vitacls.org or anethercott@handsfhn.ca and request a subscription.

To register ... just follow this link. 

Wednesday, January 20, 2016

Hey, Hey, Stop the Bus!

Image Description: An Oscar statuette.

I love the movies.

Joe and I go to a movie nearly every weekend. I spend time reading up on what's coming out and, I'll admit, about the stars and about casting for movies and about controversies that erupt, from time to time, about the script or the approach to the script. I love that stuff. It's a real diversion for me.

And the Oscars?

I wait, eagerly, with my own list of who I think should be nominated clutched in my hand, for the announcement of the nominations. I like this stuff.

It was impossible not to notice, again this year, that the nominations were very, very white. I was both angered and disappointed. I knew immediately that I simply couldn't watch the show, which I love doing, because Oscar is supposed to be about acheivement not about race. Shit.

I was glad that the controversy this year is louder and clearer and more people are making their voices clearly heard.

Then.

In response to this, Cheryl Boone Issacs, president of the Academy of Motion Picture Arts and Sciences released a statement in which she talks about diversity in the movies. She said: In 2016, the mandate is inclusion in all of its facets: gender, race, ethnicity and sexual orientation.

Do you notice who's not on the diversity bus?

Do you notice who's almost never on the diversity bus?

While I acknowledge the importance of what she said for other minorities, I am enraged that the cultural exclusion of people with disabilities continues to be acceptable. It's not even worth a mention that people with disabilities are so despised by Hollywood that we aren't even hired to play ourselves!! We have issues to.

But inclusion isn't us.

But diversity isn't us.

Our voices aren't welcome at the table.

But maybe they don't hire us, or tell stories about us, because they don't want to have to ramp the stage.

Maybe that's it.

Tuesday, January 19, 2016

Questions. Emails. Love.

Image Description: A day planner opened witht eh word Wedding on the Friday date, above the word are two wedding rings.
I received an email yesterday from a young man with Down Syndrome asking me a question about relationships and sexuality. He said in his email that he had been in an abuse prevention class that I taught a long time ago and when he decided he wanted to write me he looked me up on the computer. When he 'googled' me he found an article I'd written about a young man with down syndrome called down syndrome off the clock. He read the article, loved it, and was then convinced that I was the man he wanted to get advice from.

He had a question that was about sexuality, disability and down syndrome. He is about to get married to his fiance and there was one aspect about his sexuality that he didn't quite understand and he'd tried asking his support worker, who didn't know and didn't know who to ask. He didn't want to ask his parents because, well, they're his parents and that's a bit, in his mind, icky. So, he looked me up and he wrote me.

Clearly I'm not going to give you any more information about the question that he had or what my response, which I sent right away, was to the question. That would be completely inappropriate here. I did ask him if I could write about him writing me, because that's what really excited me.

Let's look at the precursors to his email ...

1) He is in love and is about to get married. That is such a monumental shift from the days of forced sterilizations, gender separation and punishment for sexual loving behaviour. Relationships used to terrify us and they were driven underground. In the full light of day, this man is in love and is getting married. Just this fact tells you everything you need to know about his parents and the people who support him.

2) His fiance is his boyfriend of many years. Many years. He's 23! He has been out as a gay man with Down Syndrome for a long time. His parents are thrilled he's getting married and love his boyfriend. In my mind I can see the faces of so many men and women with intellectual disabilities whose sexuality has been systematically punished and who have brutalized by prejudice masking as therapy. OK, now you know even more about those who love  those who support him.

3) He had access to the world outside himself and inside his computer. He was able to look someone up, seek them out and ask them a question. I know everyone goes all apoplectic about people with intellectual disabilities and the dangers of the Internet but, come on, can we talk about the value of the Internet to everyone, including people with intellectual disabilities?

In my email to him, I had the privilege of congratulating him on his coming wedding and that I was honoured that he remembered my workshop and trusted me enough to approach me to ask me his question.

And I admit.

I cried while writing that, for all sorts of different reasons.

Monday, January 18, 2016

Seeing Sherlock

Image Description: A drawing of Sherlock Holmes in traditional garb with a pipe
Last Friday I was in a bit of a state. The restrictions imposed upon me by the break down of my power chair were very keenly felt that day. Gone was the gratitude I had for having a mobility option in the old scooter I have. I resented the fact that I was limited to a six or seven, at the maximum, block radius. I could no longer use the subway which made my restriction complete. On Friday I noticed that the Sherlock Holmes seasonal special was playing down at Yonge and Dundas, a theatre we go to often. Or, more precisely, went to often. I haven't been south of College Street since before Christmas.

I sat and thought about it. It was one in a string of things that I'd wanted to see there. 'A Winter's Tale' was high on our list but it too was playing out of my reach. The scooter would get there, it's downhill all the way. The scooter would not make it back, it's uphill all the way. Then I came up with an idea. I could scooter down and WheelTrans back. I don't know why this solution hadn't occurred to me before, but, no matter, it did now. I went on line and was easily able to book the trip.

On Saturday we headed down and when we crossed College, the outer limit for the scooter, it felt amazing. It was like I could hear shackles drop and I could feel a great freedom fill my heart. Those that don't understand mobility in the same way as those of us who have been liberated by wheels will never understand that I'm not overstating the rush you feel from going further and farther and freer. It was awesome.

It had only been maybe a month since we'd been down to the theatre there, but it was wonderful going into the building. Joe and I had planned to have lunch there and I was able to have a five spice tofu with oyster mushroom sandwich prepared with a 'very hot' sauce topping. It was awesome. We sat and we chatted comfortably for a while and then headed up to see the show.

It was great.

Afterwards we went to the lobby, 15 minutes early, to wait for my ride. Two WheelTrans buses pulled up and dropped people off, neither of them was picking me up, but third time lucky, I was in and on my way home. I wasn't actually as simple as that, my scooter doesn't have the power to make it up the WheelTrans ramp when entering the back way, the driver grinned and said that he'd make sure I made it up with no problem. I started up and suddenly manpower plus scooter power plus the power of prayer got the scooter right into place.

When I got over the scooter I was suddenly overwhelmed with emotion. My world was a little bit bigger than it was before. I had adapted, come up with a strategy and, home now, I knew it was a strategy that works.

The poor driver, I turned to him and said, "I just want to tell you that you, and WheelTrans, you make a real difference to the quality of my life," I was quite choked when I said it but I had to say it. It was true. The emotion I felt was real. I meant every word I said. He was clearly moved by what I'd said and responded in a very personal way. What I'd said clearly meant something to him too.

So my world is a little bigger. It will need more planning and it will mean more waiting but it's bigger and I'm thankful for that.

I continue to wait to know what happens next with my chair.

But the wait will be a little more bearable.

Sunday, January 17, 2016

When Time Doesn't Matter

Image Description: A photograph of Joe, in a white shirt, and Gavin, in a plaid shirt, sitting in a restaurant with Joe's arm over Gavin's shoulder and his hand resting on Gavin's shoulder.

During the time of the plague, we watched friend after friend disappear. There were so many holes in the fabric of our lives that it seemed every day was shrouded in lace. Funerals happened daily and the list of the dead grew. AIDS rampaged, unfettered, through my community. It is the reason that Joe and I eventually moved from Toronto to the Eastern Townships of Quebec. We couldn't bear it any more. Gavin, a good friend of ours, left at around the same time, his parents needed him back home and at that moment leaving Toronto was leaving behind memories and a world populated by missing people.

We kept in touch with Gavin for a couple of years and then, suddenly, nothing. We had no idea what happened to him, where he had gone, or if he was still alive. While we always hoped that he was living out a happy life, we were more inclined to believe that he was gone.

Then, a couple of weeks ago, we recieved an email. I stared at the name for a few minutes before opening it. I wondered at the coincidence. But it happened before, there is a wonderful man from Scotland who bears the same name as a friend, a wonderful talented musician, lost to AIDS, in Vancouver. When I first recieved an email from Jim in Scotland, I sat at my computer with tears running down my face. Just seeing the name, just remembering the days when I'd get emails from that name, from my friend...

But seeing Gavin's name was different. I didn't know what had happened to him. I opened the email to find a delightful letter from Gavin telling us that he was traveling through to Quebec and would like to stop in Toronto and catch up. I wrote back immediately, so happy to have heard from him. Thirty years of silence suddenly seemed insignificant, but the time in waiting for him to come to Toronto seemed long. We arranged lunch at our local pub.

As life would have it, I was unable to go to lunch. I had things on at work that I simply couldn't rearrange, so we set it such that Joe would meet Gavin and I would call in and join the conversation for just a little bit.

I called, just after they ordered, and Joe answered, we spoke briefly and then he passed me over to Gavin. He sounded the same! I remembered his voice exactly, we chatted like we once did. And sometimes, with old friends, it seems like no time has passed ... this was one of those times. It was like we'd been chatting on phones for the last 30 years.

We fell into talking about the old days, the dark days, and all the memories we had. I was surprised to be laughing so much. It was like, as Gavin talked about some of those times that I remembered, maybe for the first time in a long time, that there had been sunny days, that we had laughed, that we'd gotten drunk and done silly things. Gavin too talked about walking the Church Street strip and seeing what was what. The old bar we used to drink at, the three of us, is gone now ... but other's remain. He spoke of his memories and I mine. And then it was time to hang up. I still had a couple of meetings I needed to get to ... and I did. But before I hung up I insisted, with emphasis, that a picture be taken of Joe and Gavin together. As you have seen, it was done.

Gavin's back on the road now, heading home. We've vowed to keep in touch, again, and that the next time, I'd be there too.

And, God Willing, I will be.

Saturday, January 16, 2016

Tourists!

Image Description: A pathway through a park with a wheelchair being pushed along it. Only the hand pushing and the wheels are pictured.
There were three of us on the bus.

All of us were in manual wheelchairs.

Two, picked up at different spots and meeting for the first time, were both going for physiotherapy at a local hospital, and me going to work. We briefly introduced ourselves. I learned that both of the others, a man and a woman, had been seriously hurt at work and both had feared that they'd never walk again and now were well underway with physio. They learned that I had a permanent disability and was on my way to work - two facts that they had a little difficulty putting together in their minds.

They then fell into conversation with each other. They briefly touched on the fears they had that the disabilities they were experiencing would be life long but then moved on to talking about their experiences in the wheelchair. What they talked about would surprise no one in the community of wheelchair users. They talked about barriers. They talked about inaccessibility. They talked about doorways and bathrooms and curbs. They talked about attitudes, without understanding that the social aspects of disability were also an accessibility issue.

Frustration and anger were expressed at how they were isolated and ignored while being in the chair, they were angered that people thought of them as disabled while in fact they were just using the chair and would be returning to the world of the walking. They were being mistaken for actual disabled people - they said this, I think forgetting that I was on the bus. They saw the barriers and the social treatment as a natural consequence of disability and they attributed to disability everything they experienced. They didn't see is as bigotry in action or bias in construction, they saw it as 'this is how it is' and they wanted escape from that at any cost. And walking was the cost.

I remember many years ago going to see a movie with a plot line about a lesbian woman, Desert Hearts. I have always remembered a conversation in that film, when the protagonist was fighting with another character who was 'flirting' with or 'play at' being a lesbian:

Cay: Listen, you're just visiting the way I live. I guess it would suit you find to hide in that hotel room until your train leaves.

Vivian: Oh, then let's hire a float. You are so insistent on making everyone think the way you do

Cay: Oh, yeah. You're making real headway in that department!

Vivian: No fear, no confusion, so self-assured.

Cay:I don't act that way to change the world. I act that way so that the goddamn world won't change me!

I really liked the whole conversation so I've put it here, but it's the line "Listen, you're just visiting the way I live." It really struck me then and I knew it would real meaning for me later in my life, and it did. Because that's exactly what I felt when I listened to this conversation.

I tried, several times, to enter the conversation to bring a real disability perspective to what they had to say but my attempts were rebuffed, they were not interested in a disability perspective - they wanted to share their experience with each other, as valued people who were temporarily experiencing being devalued. So I gave up and simply listened at the periphery of their conversation at the margin of their attention - as they did to me what the were furious at what others did to them. The irony of this lost in the passion of their discussion with each other.

This confirmed in my mind the danger of those 'let's experience disability by riding around in a chair for an hour' exercises. They don't get disability they get the frustrations and imagine the horrors of a lifetime of living with barriers and they long for the end of the hour when they can get out of the chair. It's the fact that they can get out of the chair that disallows them the necessity of thinking like an actual person with a disability who sees barriers in a very different way than the 'tourists' who throw their hands up in resignation, or who accept the social exclusion and the invisibility that comes with being highly visible as simply a natural result of lower social status. They get out of the chair thinking that life as a disabled person is what they experienced - and pity is reinforced as the right response, and death is seen as the preferred option.

Disability isn't a tourist destination, it's a permanent move. And everyone knows that it's different to visit New York City than it is to live there. The same is true of how I live as a disabled person. My life experiences the same barriers as those two on the bus but my experience of those barriers is vastly different than theirs. I know how to deal with them. I have strategies to live and be joyful as a disabled person. They did not. Their strategy was simply to bemoan their fate and endure until they stand up and walk away from their experience.

I don't walk away from disability.

I live with it, mostly the same way everyone lives with everything, in my own way and experiencing love and pain and the whole damn thing.

They got off the bus before I did, as they did one of them said that they wished that I was getting off too and that I had walking in my future. I simply said, "Why on earth would I want that? I'm on my way from home where I'm loved to work where I'm valued. I have no need of this 'walking' you speak about." I laughed as I said this but all I received was four eyes locked on me in an incredulous stare.

Friday, January 15, 2016

"I Do" Fix Wheelchairs

ot-080923-stride-wheelchair3
Image description: A wall full of wheelchairs and walkers in a warehouse.
I rolled into a huge warehouse where there were wheelchairs and walkers and scooters, not only that there were tub chairs and toilet adaptions and crutches. Most of what I saw was in bits and pieces, with people studiously putting them together or carefully taking them apart. In amongst all that sat my wheelchair. The back and seat were off but I recognized it right away and a kind of funny thing happened in my heart.

Years ago when we moved we had to put Fred and Eric, our dogs, into the kennel for a few weeks. It was a difficult thing to do but we had no other option. When we went to get them, and they spotted us and yelped while running pell mell to greet us, I felt the same kind of thing. An enormous, overwhelming attachment and a sense of pure gladness at seeing it. I know that many will not understand, but for me, my attachment to my power chair is a real thing. I love that chair, I love the memories attached to it, I love what it has done for me over the past seven years.

We went over to the chair and met with the fellow working on it. I had fears about this meeting and how it would go and those fears turned out, in this case, to be baseless. He was a kind and gentle man who treated me with nothing but respect. When I was on the chair, he watched the chair, asked questions about the chair and seemed to understand that I would 'feel' things in the chair that he would not. I knew how it worked at it's peak and could compare to how it's working now. His questions were respectful and probing and showed a keen interest to understand my concerns exactly.

During our conversation we were talking about travelling in my power chair and Joe piped up to clarify, "We never take it on an aeroplane." The repair guy laughed and said that he knew all about travel in a wheelchair because his wife, of many years, has been a life long wheelchair user and he and she have their own travel horror stories to tell.

I am not saying that you have to have a disability or be intimately aware of disability to be a good service provider, but I think, maybe, it may help. His interactions with me were completely natural, not like they were as a result of some standardized training in speaking with or working with someone with a disability. I see this same thing in staff who work with people with intellectual disabilities, I see the difference from when they come out of school, full of ideas and ideals, and then run smack dab into the messiness of the lives of people with disabilities. Shock and surprise that, like everyone else, people with disabilities live lives of both chaos and contradiction. Then later, if they have allowed themselves to listen and to learn and to grow, they become very different people and provide very different service.

It's cool.

There are some big problems with the chair.

I'm going to be dealing with this for a long while yet.

But fear not, especially those who have written to tell me that I'm writing too much about my chair, I won't be making this a part of my regular blogging unless there is a story that I want to tell or an incident that I want, for myself, to record.

Onwards.

Thursday, January 14, 2016

Scrutiny

Image description: A white charicature of a person is holding a magnifying glass that is larger than it is.
This morning I go to the shop to ride around in my wheelchair so that they can see what is wrong with my chair. It's a busy day for me and the stop at the shop makes the day even busier but, man, I really want my chair back and in full working order. I have this fear that the chair, like me waiting for the dentist only to find my toothache disappear in the waiting room, will work just fine under their watching eyes.

I also have an extreme dislike of going to do things like that and knowing that I'm going to be the centre of attention and scrutiny. I know this is weird because I am often at the centre of attention in a room. But there is a difference between that kind of structured attention than this kind of attention.

I'm not sure I can explain it but, I'm going to give it a try because I'd like to know if others have similar feelings. Difference brings with it the scrutiny of others. Being fat for many years and then fat and disabled for many more, my life has been lived at the other end of people's stares and comments and judgements. While I can sit in a room of 500 and give a lecture on a stage, I get all twisted inside if I have to get my chair through a crowded room at an exhibit.

I think because I become the exhibit.

I've been told, by a few people who choose to believe that this is all made up, that it's just in my mind. That people don't look, judge and then have a reaction in tune with that judgement. I might be convinced to believe them if so many of the reactions are verbal. I used to think that disability and difference gave people permission to intrude into and comment on the lives of those of us who dare to be in public spaces. I'm wrong of course, it's not disability and difference that causes this, it's power and privilege.

So, I'm sitting here knowing I'm going to be watched drive my chair by two or three people. I know, or I'm guessing, that while they are there to watch the chair perform, I will also be on display as well.

And I don't like it.

A bit.

Wednesday, January 13, 2016

What He Said

Image description: in red captial letters "R-WORD NOT WELCOMED HERE" on pavement.
Dear Sir,

What it did to me when you used the R-word today you made your bigotry my problem. And I resent that. The fact that you were providing service to me, a disabled man, and in the course of that service, in a moment of frustration you said that something was "freaking r#tarded" changed everything. I spoke you to you about it, just before I was about to leave, because I was too fearful to do it during the time I needed your support, in a tremulous voice. It wasn't easy for me to do. It wasn't easy for me to see the anger in your eyes at being called out. It wasn't easy for me to leave knowing that I will need your support in the future. I was full of worry of future consequences of what I did today. I have decided that what I need to do is write and tell you what you did to me today. I want you to understand the impact of your behaviour on me. 

The moment you said that word he space around me no longer felt safe. I had always felt safe there. This is disabled space. This is a place where almost everyone, except the service providers, all of whom have been trained to provide service to people with disabilities, are disabled. There are few such spaces. This is one of them. And I felt safe here. Until you opened your mouth.

When you spoke, you used restraint, which proves you have restraint, because you didn't drop the F-bomb, you used 'freaking' rather than 'fucking.' Some part of you knew not to use that word. You stopped yourself. You chose a different word. But, I tell you this, I would have much rather heard the 'f word' than the 'r word.' But then, when you said the 'r word' you spat it out. Your  anger was in voice, and your tone which communicated disgust and distaste and disrespect and the word that you found strong enough to carry that anger was the 'r word.' You knew what it meant, you used it in a way that clearly communicated that you knew what it meant, and you didn't care.

Don't tell me that 'I didn't mean it that way' ... of course you did.

And you were betting.

Betting on the fact that as I had a physical disability and not an intellectual disability that I'd be in your camp,on your side. You were betting on my being so wrapped up in my insecurities that I'd be pleased to be included with you, and not them. That I'd be one of the ones who liked it to be clear that 'at least I'm not r#tarded.' Well you bet wrong. I am a member of many minority communities. I remember when the gay male community went through a phase where 'straight looking, straight acting' was the goal and anyone less than that, or, more appropriately, more than that was outcast. 'Flamboyant' was the word they used with derision and disrespect. I didn't get it then there.

I don't get it now, here.

You were also betting on my silence.

Betting on the fact that I needed your support and that in my need came my dependence and in my dependence came my submission. And you were right, I kept silent, until I was at the door. I did fear you. You words told me that you had violence in you. I waited until I was free of you to speak. I waiting until I could escape you. I knew that my speaking out would flame your anger, that you would immediately feel victim of my offence. And you did. I saw in your eyes first your hate, then as you eyed me up and down, your dismissal of me and therefore my concerns.

You never apologized.

You didn't feel you had to.

That tells me something about you, or maybe it confirms what I learned about you when you spoke the way you spoke.

You were betting on one other thing.

You were betting that I had no power in relationship to you. You were wrong. Right about now you should be hearing from your employer, who was shocked at what I had to say.

But, whatever happens now, happens.

I wanted you to hear from me.

That word is a hateful word.

It destroys, for those of us within the disability community, any sense of safety.

It destroys, for those of us who have disabilities, any sense of trust that we are respected.

It destroys, and you should consider this, your character.

I'm still angry.

At you.

At the word.

At the fact that I had to receive support from someone, be touched by someone, like you.

Dave

Tuesday, January 12, 2016

When Is a Feeling Wrong?

Image Description: a blue glove with a different feeling face on each of the finger tips and thumb.
I felt what I felt but I didn't know if I should have felt what I felt but, nevertheless, I felt it anyways. Part of me knew that feeling the way I was feeling wasn't the right feeling to have in the situation but that didn't stop me from feeling what I was feeling.

I felt caught.

Joe and I made had just turned east on Bloor when we stopped, chatted, and decided to turn back to the corner and cross over to the north side. As you all know I am using the scooter and one of the things I hate about the scooter is that it makes a beeping noise when it backs up. I find it noisy, unnecessary and it draws too much attention to what I'm doing. It robs me of anonymity. But I began to back up to turn round and go the way we'd freshly decided to go.

I was only seconds into the backing up process when a woman, who is 'known' in the area as someone who has difficulty with mental health, noticed me backing up. Now, I need to say, I am pretty good at doing this. I am careful, I always turn the power down so I have full control, and my caution works, I've never backed into anyone or anything. Even with my obvious care she came to full alert. Her arms flew out and up, kind of the position you see the airport people who guide in aeroplanes. And she began to shout, as loud as she could.

"STOP!! HE'S BACKING UP. MAKE ROOM. MAKE ROOM. MAKE ROOM. HE'S BACKING UP. HE'S BACKING UP. STOP!! MAKE ROOM. MAKE ROOM!"

Me?

I was mortified.

I don't like attention drawn to me that way.

I didn't need the help.

I knew instantly that she was trying to do something nice. She was trying to help me out. I knew that her motives were really good.

But I kept thinking. "Shut up! Shut up! Shut up!"

I wasn't close enough to her to speak to her and tell her 'thanks but I don't need help.' I would have had to holler at her and I don't think she would have heard me over her own shouting.

Anyways.

I felt angry.

I felt frustrated.

I felt really, really annoyed.

And.

I wanted her to "Shut up."

Even though I knew, in my mind, that she was trying to help. I hated the scene that was being made. I hated that people all stopped, staring first at her and then and me and then back at her. I hated feeling centred out. I hated being the incident that people would talk about when they got home.

And I was angry with her.

I know that I need to be understanding. I know that she has her way of being in the world and I have my way of being in the world. I know that we both have a right to public space and that we have a right to be how we are in public space. I know all that.

But I didn't like what she did.

And it made me angry.

It may be wrong.

It may be unkind.

But that's how I felt.

I'm not sure what I should have felt ...

Help!

Saturday, January 09, 2016

Chair Update: By Request

Image description: The blue wheelchair symbol with a red question mark over the head and with the words 'are you serious?' underneath in black.
A number of people have asked me to update the status of my powerchair. I've been avoiding doing it because it's all just so difficult. But here goes ...

After the chair was picked up, maybe a day or two later, I got a call from the repair guy asking me to be very specific about the problems I'm experiencing with the chair. I did so and after answering a few other questions, he rang off. I called a couple of times to get information and left messages but didn't hear back.

Yesterday I spoke to someone who is apparently coordinating the work with the chair and she told me that they have fixed some very minor stuff but can't find anything wrong with the chair. She said that the repair guy has been riding around in the chair with no problems. When talking to him he told me his weight and I told him that I'm double that amount. I mentioned this to her and she said something in the order of 'Well what are we supposed to do about that?' I kind of thought they may have a way of testing chairs for big people because they sell chairs for big people, but I guess they don't.

So on Monday I've got to call them and set a date, late next week, to go to their shop and ride around on the chair so they can see the problem. I'm good with that but it's getting really frustrating because I've been without the chair for weeks now. But, if that's what I have to do, I'll do it.

It's going to be awhile before I have any resolution on this because - things are never easy are the?