A Christmas Moment: Broken?

Photo Description: A black horse grazing. His front left leg is prosthetic.

The tree beckoned them. Their mittens and boots flew off as they ran in excitedly asking, "Can we decorate your tree!!??!!" Sometimes I think that the exclamation mark and the question mark were invented by parents of young children because I'm not sure that they would be able to speak without them. Our tree is up late this year because of travel and the lights had just been put on and we had not yet started to decorate so their offer was eagerly accepted.

They flew around the tree at speeds that were astonishing to watch. In seconds the tree looked happier. The ornaments were carefully taken out of their boxes and then quickly placed on the perfect branch. That such care and such speed could co-exist is a marvel. At one point Sadie pulled out an ornament of the winged horse Pegasus, and cried out, "His leg is broken off!"

She held it up to Joe to look at. Joe looked at the ornament and said, "Sadie, he's not broken, he's just disabled."

"Like Dave," she said, then thought further, "Dave's not broken."

The ornament went on the tree.

Glovittens

Photo Description: Hudson's Bay Olympic Collection Mittens. Black tops, with the Olympic logo and Canadian flag, red middle with CAN, in white on the top of the glove hand and a white maple leaf on the palm of the glove hand, then white tips at the top of the thumb and at the top of the fingers.

My hands get cold very easily.

A few winters ago I finally came up with a solution to that problem. I had bought various pairs of gloves, all promising warmth and none of them were capable of keeping me warm  while out and about using my power chair. Finally, in desperation, I tried something. I bought a nice pair of gloves that fit fairly snugly. Then I bought a pair of that year's annual Hudson's Bay Olympic mitts. When I first tried it, Joe looked at me quizzically with the 'what the hell ...' look on his face. I put the glove on, then shoved my gloved hands in the the mitts. Out we went. Victory! Warmth.

I'm telling you this now because, though my method keeps me warm it also creates another challenge which I face every year at this time. Driving my power chair with it's little joystick, that responds to the slightest pressure, with these gloves on requires tremendous focus and a couple of weeks of learning to drive all over again.

Not only that, learning to do this when there are more people out shopping, more things stuffed in the way, narrower passageways to get through. I do take my glovittens off when I go into a store, but as people are flowing in behind me I have to drive until I can find a place to stop and get them off. This means, like it did the other day, driving through the liquor store with new displays of fancy expensive bottles everywhere I looked, until I got to the back corner of the store where I took them off. I expected, at any moment, to here the crashing sound that a cut corner would leave behind. But I made it.

Today we're going out into that Black Friday weekend madness, we need groceries and to pick up a gift or two to send to people out west. My glovittens will be on, may the odds be ever in my favour as I make my way, with my joystick nestled between two layers of wool, completely unfelt my my hand.

Change is a Constant

Photo description: The word 'IDENTITY' in capital letters using a fingerprint font.

Last week in San Francisco I was honoured to give the opening keynote at the National Association for Dual Diagnosis annual conference. In talking with them as it was being arranged, I suggested that the topic be around the issue of identity for people with intellectual disabilities. I was thrilled when they agreed that this would be a good topic for a keynote.

In the keynote I talked about the importance of identity, positive identity as a disabled person, for people with intellectual disabilities. I related identity to good mental health and to good mental health practice. Separating people, even by language, from their identity gives people the message that there is something shameful in simply being authentically who they are. I was pleased that the keynote was well received, but that's not what I want to write about.

I received an email this morning from someone who had attended the conference and who said that they had been really challenged by the message that disability can be celebrated and be a source of both identity and pride. In her practice with people with disabilities she had never raised the topic of disability believing, somehow, that it was simply unmentionable. She had never questioned why it was unmentionable, it was, she said, assumed to be self-evident that disability was shrouded in silence.

She went home from the conference and in one of her first treatment sessions with someone struggling with depression and suicidal ideation she brought the issue of disability in at a point where it seemed natural to do so. She said that she used the words carefully and fearfully, afraid of the response. Instead, the person she was talking with took a big breath and said, "so, you know?" They then talked about how it had never been mentioned and the fellow thought that he wasn't allowed to bring it up. "I don't have to pretend anymore," he said, with relief.

The rapport that she thought she had had with him was a sham, it was based on his attempts to please her and accommodate what he thought she wanted from him. They were, she said, starting again, this time with honesty and acceptance. "I need to examine my attitudes and my prejudices," she said, "I think I have communicated a lack of real respect for the people I have worked with for so many years."

I am impressed that she was willing to question herself and examine her practice based on what she learned at a conference. I am always amazed when people are willing to embrace a new idea or a new way of doing practice. I try hard, when I'm at a lecture or listing to a presentation, to be open to new ideas - and I know it's hard to do when someone challenges ideas that I hold dear. So, my hat's off to the woman who wrote the email, she clearly understands that we learn as we live and therefore change is a constant.

She told me that I could write about this but she asked that I only quote from the email, not publish the email as written, which is what I've done.

Over Sharing? Maybe. Maybe not.

Photo Description: White writing on green background: I am who I am and that's all I can be.

I received some feedback about a lecture I gave recently. The person who filled out the evaluation really wanted me to know that they enjoyed the lecture, got a lot out of it but that there was something that bothered them. They thought I 'over shared' from my life. They listed three things that they knew about me from the lecture:

I am gay and my husband's name is Joe.

I am out and proud about my disability.

I am an anxious about my presentations and use anti-anxiety meds.

They thought this was TMI, as the expression goes and recommends that I consider removing the two that were not disability related from my presentations.

OK so that would be taking out the gay bit and the anxiety bit.

Hmmm.

I take feedback seriously and, so, thought about this a little bit. Each of those things in that list I have thoughtfully included in my presentation for a reason. Some of them caused me concern to mention, some of them were hard to mention. But I did and I do because of these reasons.

I know I lecture in places where being gay isn't wildly accepted with open arms and people fear rejection and unemployment if they were 'out'. By mentioning my sexuality and my relationship I hope to do two thing - get homophobes to rethink what they think about homosexuality and give the message to those from the LGBT community that they are not alone.

The idea of being 'out and proud' about disability is still a new one. Talking about disability, my own personal experience with disability, from a pride and by using identity first language, I hope to challenge what people think they know about disability. Just because you work in the field of disability does not mean that you have disability positive attitudes.

The hardest thing to mention was the fact that I live with anxiety, and a lot of anxiety about public speaking. I knew that people wouldn't believe it because I do it so much. I felt, and I understand this was wrong but I felt it anyway, a bit of shame at having to take an anti-anxiety medication. It's that shame that drove me to speak about it, there is too much silence about mental health issues and the kinds of ways that we can be affected by mental health concerns. Silence equals shame and shame can lead to suicide. So, I speak up.

Now let's be clear, I MENTION these things, in passing, in the lectures. If you haven't seen me lecture or heard a recording of me lecture then you might be led to thing that I harp on about these issues. I don't. They come into the presentation when it's natural for it to happen.

So, I wonder, and this is unfair to do publicly but I figure that anonymous means anonymous so I can respond publicly without fear of shaming an individual identifiable person, if the request to remove those two things is the reason I need to keep those two things in. I wonder if the request was because my sexuality and my acknowledging that I have mental health needs and supports caused some discomfort that needs to be explored. I'm just guessing, of course, but I do wonder.

Gay and Proud, Disabled and Proud, Anxious and Proudly Coping. That's me. And because that's me, that's part of how I present myself to the world.

So, after thoughtful consideration, I'm staying the course.

History: A View From The Wrong Side

Discussing the issue of 'assisted suicide' with almost anyone outside the disability community is a difficult thing to do. There seems to be a general dismissal of the concerns that are being legitimately raised by disability activists and organizations such as Not Dead Yet.

I am, they assure me, 'making myself upset when there is no cause.'

I am, they insist, 'purposely misunderstanding the issue.'

Those that I have spoken to seem to think that, we as disabled people, are a bit addled and prone to upset. Perhaps there's need for a massive PRN that we need to be given, from time to time, to settle down our nerves. I argue, strenuously, and to no effect, that disabled people do see the issue and perhaps see it more clearly than anyone else. When that doesn't work:

I am, they tell me, 'on the wrong side of history.'

For a moment this does silence me. Because they are right. Disabled people have always been on the wrong side of history. We have been left in forests to die, we have been vilified by those who think that we are manifestations of sin, our 'final solution' though seldom acknowledged came first and genocide honed it's skills on our lives in the basement of institutions. We have been sterilized, brutalized, congregated, segregated, persecuted and destroyed. History isn't our friend, you've got me there.

I am, again reassured, that 'this is all in the past.'

When I'm not comforted by this, and when I suggest that past attitudes are influencing present legislation, I'm considered to be, again, 'purposely resistant to the real intent of assisted suicide, which is to end the suffering of people who are terminally ill.'

But that's not true is it? Diane Coleman from Not Dead Yet points out "Under the Canadian Supreme Court ruling, disabled people explicitly qualify for assisted suicide whether or not they are 'terminal'". 

So, just how does the court see people with disabilities? What faith can we put in legislators and law makers and decision makers?

Recently there was a ruling in a case where a teenager was convicted of the murder of a young police officer. During the commission of the crime the teenager became disabled. While you can argue the judges ultimate decision to not imprison the teen, I'm not going to comment on that. It's what the judge said about the young man's life as a wheelchair user. Justice Alex Sosna said, "... already serving a life sentence, imprisoned in his wheelchair."


"imprisoned in his wheelchair."

That's what he said. this educated, sophisticated, interpreter of the law and justice maker. His view of disability is the view that has been held of disability from the get go, we are imprisoned and our only release will be ... death. Justice Sosna's ignorance of the life that people with disabilities live is, if the power he has didn't make this so frightening, laughable.

Let me state clearly.

I am not assured or reassured that prejudice will not be part of decision making about our lives and our deaths.

I am very aware that the voice of the disability community is being purposely ignored by those who want laws that make our deaths easy to procure.

I am deeply frightened that one day, some one like Justice Sosna, will have a say over me and my life.

History.

Repeats itself.

Like a demanding child.

Until it's heard.

STK()TOYCG

We came through the door last night at 6:30, right at dinner time, and collapsed into the front room. Well, collapsed after the luggage had been brought in, my wheelchair put into place, our housecoats found and put on, and drinks acquired. Our trip home had been flawless, not a single problem of any kind. Our trip overall was memorable.

At the conference I was honoured to receive the Frank J. Menolascino Award for Excellencefrom the National Association for the Dually Diagnosed. I had been informed that I was to receive the award a couple weeks before the conference and was surprised that I'd been nominated and selected.

For those who don't know his work Dr. Menolascino was a giant in the field of intellectual disabilities and his list of achievements is long. But for me, I remember Frank because there was a moment when he offered me a kindness, that only he could have offered, in a moment where I truly needed the gift. My mind knows that Frank made a huge contribution to the field of Dual Diagnosis but my heart knows him as a kind and generous man.

We make much of, and we should, the idea of 'random acts of kindness' ... I love the idea of just doing something nice for some random someone. But, it's a bit easier to do a no-strings kindness to someone who's a stranger, someone you won't see again. There is another kind of kindness:

Specific, targeted kindness, in a time of need for someone in your life, that only you can give. It's acronym is STK()TOYCG. These are more difficult, aren't they. Kindnesses, within relationships, can be seen very differently, motives can be questions, debts can be felt - in either direction. Kindness, within relationships, involves risk. I have seen kindness offered from one spouse to another, in a moment of need and vulnerability, be swatted away with anger and hurt. I have seen the desire to do kindness die.

There are moments when Joe is tremendously kind to me. Accepting this kindness, in a moment of vulnerability, is really, really, hard. But I know that rejecting it is dangerous, I may need it again. Later, when the emotion is gone, I know that Joe's kindness was just kindness, it wasn't a statement about me, my disability or my fragility. It was just a STK()TOHCG.

And that's what Frank did for me. I am probably still a speaker and presenter because of Frank. I needed something from him and though it was hard to accept at the time, and though I felt diminished, not because of how he did what he did but because of how I felt about needing something from him. Later I was to realize that I wasn't diminished, I'd been made stronger.

Next time you do a random act of kindness, think about maybe the STK()TOYCG's that come you way. In the end, the real end, it may be what you would like to be remembered for.

Leaving Welcome

Photo description: A wooden fence held together by nails at the top and bottom of the individual planks.

Today is the last day of the NADD conference, which I have enjoyed immensely. I typically don't go to the conferences that I speak at, because of time constraints. But with this one two of my team are presenting and I wanted to be here with them to support them and to celebrate the work that they are doing. So, I've been attending sessions, enjoying chatting with people at breaks and last night I attended the wine and cheese gathering.

I was able to talk to a lot of different people, hear a lot of wonderful ideas, laugh at some really good stories. It was wonderfully social, wonderfully welcoming and wonderfully engaging. In short, I had a good time. Joe, too, was welcome and engaged. I was often rolling off one way while he went another. I could hear his laugh, which is uniquely his, across a crowded room. It was nice.

When last night was over and we came back up to the room. I felt a sense of real melancholy. I know after today's sessions, I will be with Joe as we pack the car and head to another hotel. We aren't flying home until Sunday, and this hotel is out of our budget, We are going to crash tonight and then hit the town a bit tomorrow.

Here's the thing.

I have to transition from this world, the world of the conference where I am known, as a speaker yes, but as a person too. I get treated as if I belong there, and respected there, and as if I would be missed had I not shown. Joe, too, gets treated as if our relationship matters and his support of me is appreciated.

Now I have to go into the real world.

And it shouldn't, but that saddens me.

I like just being part of a social unit rather than a thing to be stared at, laughed at and mocked.

But, I need to put up my defences, reconstruct them again - they've been down for a couple of days, and I'll be fine.

But I want more than fine.

Just a little more than ... fine.  

The Opposite of Horror!

Photo Description: Air Canada plane flying over a coastal area.

Joe and I approached our travel day grimly.

This may seem pessimistic because Joe and I have had such good service from so many people. But, here's the issue when things have gone wrong, they've gone wrong. Those incidents stay in one's mind and the 'list of things that can go wrong' gets longer and longer. For example, a few years ago a fellow group of passengers stole my wheelchair, which was waiting for me at the door of the plane. Security guards caught them as they were putting into the trunk of a car which had pulled up to pick them up at arrivals level. I got my chair back but the guards didn't know about chairs and therefore didn't get the legs back. It was horrid. Now, it's on the list of what can go wrong and I worry from landing until I'm in my chair. Oh, and then there's the time that the airport guy refused to bring my chair up to the door and sent it on to the luggage cart - causing no end of difficulty.

So, as I said, the list is long.

But we arrived at the airport right on time, even a bit early, Rah WheelTrans. So we got to the help desk well in advance of the flight. The good people there were welcoming and assured me that all my arrangements for the flight, where we sat on the plane, and the assistance needed at both ends was noted. They got us there quickly and with no fuss. They all seemed to know my name and addressed me in a really professional but also a nicely friendly manner. At the gate, the woman there, spoke to me about pre boarding and the fellow that came to help out were both intent on giving excellent service. Now we typically get great service from Air Canada but this was like everyone was having their best ever day at work. Even on the plane, when I spoke to them about the wheelchair and watching out for it so it's not stolen they took me seriously and then came to speak to me at my seat about accessibility options on the plane!!

So the flight was spectacular.

Best.

Service.

Ever.

By.

An.

Airline.

I've been reading horror stories about people with disabilities being treated poorly on airlines, well, whatever is the opposite of horror, insert that word here as an adjective for the way we were welcomed and treated by every single Air Canada employee.

Amazing.

There was a hiccup with the car, they gave us an upgrade, which is a car that I can't get into because the step in is too high. So we had to go back to the desk, going by the kind of car we asked for in the parking lot. We asked for that kind of car, was told they didn't have any, we gave them the space number for it, they went and checked, found it there, and gave it to us. It took a while but we were good. For problems, this wasn't the worst.

So we arrive.

At the desk I'm told we have a room with a roll in shower and I prefer an accessible tub, so I asked if they had one. The desk clerk gleefully said, you room has both options. When you go into the bathroom, turn left for the tub and right for the shower. I was thrilled, I've never had a room with that option before. Then he got concerned and said, "I'm afraid now that maybe this isn't one of those rooms, we only have two like that in the hotel." There wasn't a line up at the desk so he accompanied us up to the room to check and sure enough, there it was ... choices and options!

We sat in the quiet of the room, tired from travel. We were relieved to be there, like any traveler would be, but we were also relieved to be there as any disabled traveler would be. There is a difference in those two experiences, isn't there?

Packed and Ready (As I'll Ever Be)

Photo Description: Vintage tri-coloured wooden suitcases, stacked and packed.

It's a travel day today.

Though I look forward to arrival and forward to the things that are scheduled, it's this day I dread. I've spoke to a couple of disabled people today who are at the point of evaluating the true cost of travel. Not the monetary cost. The cost of that comes from being disabled, having to rely on the discretionary kindness of airport and airline personnel. The cost that comes from anxieties about chairs in airplane holds - will they come back up broken, will they come back up at all? The cost that comes from simply needing a bit of time and being surrounded by passengers who have no time to give.

It's travel day today.

I wanted to write something different this morning. Something more important than this long moan. But my mind is full of the 'oh no what happens nexts' that come with travel. I aim for the other side, for getting in the car (will it be the one we ordered because we needed, not wanted, it?). I have visions of our time there.

I distract myself with thoughts of the best Chinese food restaurant in the world ... the Wing Lum cafe.

I distract myself with visions of driving up Polk Street.

I distract myself with the knowledge that we have time to get to the ocean.

So, in the end, I can't write a blog today.

I will see you, on the left coast, tomorrow.

Paris: Mourning Us

Photo Description: Black tee shirt with white disability wheelchair logo.

Like everyone else I was shocked, appalled, and frightened when I first heard of the attacks in Paris. Like many others I went immediately to the television to watch the news and, simultaneously, went on-line to augment the television reports. I kept myself up to date as best I could, wanting to know the most relevant information as it became available.

But perhaps the most relevant information, to me, wasn't ever mentioned in a broadcast that I saw on television.I found it in two brief lines in an article made available on line from the the Telegraph:

Miss Wilson, 49, originally from New Orleans, also told how she witnessed the gunmen deliberately targeting concert-goers in wheelchairs. The gunmen hunted down disabled people who were sat in an area specially set aside for wheelchair users.

I have searched and searched and have managed to find no other information about the targeting and murder of disabled people at the Bataclan. Forgive me for finding that fact worrisome. The fate of disabled people during the 9/11 attacks was little discussed, though the implications for the safety of disabled people in multistory buildings is, and continues to be, enormous. And, here again, it seems that the discussion of the specific targeting of a particular minority group goes virtually unnoticed and with little to no comment.

Are our lives worth discussion?

Are our deaths considered equally tragic as those of others without disabilities?

Are there ever going to be an acknowledgement, and mourning for, a group picked out and murdered because of their status as a member of a devalued minority?

Are questions ever going to be asked about the extent and nature of ableism and disphobia?

I'm afraid to answer any of those questions. I'm afraid of what this means in terms of how deeply our lives and our voices are dismissed as irrelevant.

I'm simply, sad.

That's to be expected. People lost their lives.

I'm also scared.

That's to be expected. My community has been attacked.

The Baby and the Burden

Photo decription: A picture of a child after amputations carried out on his arms and legs, wording on the picture says: if u ignore u r heartless type amen if he is cute.

This is the first thing I saw this morning when I went on my Facebook page. I'm not sure what motivates this kind of post, I'm not sure what it's supposed to do, I am sure that the only benefit from typing 'amen' comes to the typist not the child in the picture. I'm quite sure that this little kid doesn't care two whits if you think he's cute. I wonder what he'll think of the picture when he gets older - I wonder if he'll wonder about who gave consent for his photo to be used in this way. Or was consent given at all ... was the picture, perhaps, taken by loving parents and then taken from them by someone who saw a poster instead of a child.

But people get to type 'amen' and feel good about themselves because they just proved they aren't heartless. Momentary warm fuzzy and move along to other business, humanity ensured.

I didn't comment.

I didn't know how to put my feelings into words.

So I come here, to write this, and hope that somehow I'll be able to do so.

And I find I can't.

That this little fellow has to pick up the burden of 'inspiration' so young. That he has to begin his life in the way he will have to live it, dealing with the immature emotional needs of those who chose to see him as being made for their benefit and be defined by their need for meaning, rather than to determine and strive to live a life that benefits him and his needs, that finds his own meaning in his own life, seems tragic to me. There will be those who say that he will be a burden. There are those of us that know he, instead, is the burden bearer.

Once again, I say, we need to get our stories out and our voices heard. When I look at this kid, I see a future that includes, school, graduation, love, marriage, children, work. Maybe it's best said that when I look at this child I see, without question, a life full of everything that everyone experiences. Cute or not.

I think that children like this little boy are in real and present danger. This photo doesn't prove that people have heart, it proves that they don't! It proves that they can look at a living human child presented as an object, a thing, without protest. Believe me there were no protests about the picture in the comments, just a meaningless list of 'amens.' He is in real and present danger because as was pointed out by Diane Coleman from Not Dead Yet "Under the Canadian Supreme Court ruling, disabled people explicitly qualify for assisted suicide whether or not they are 'terminal'". 

Other status, or as some put it, the status of being other, is deadly.

I want to do something, change something, make the world better for this little boy. Beginning with this picture, but I don't know what to do.

Help.

Ye ol' Fashioned Webinar

Photo Description: An old fashioned radio with three buttons and a large round tuning display.

Yesterday I participated in a webinar on respectful language for the National Alliance for Direct Support Professionals. It was a wildly cool event. Here I sat in my home, tea beside me, Joe listening in the front room, as we broadcast into different offices and venues across the United States. It's estimated that over 1000 people heard our, sometimes very lively, discussion.

So many people comment on the down side of technology and suggest that technology is creating a cold and disconnected society. I'll leave that for others to debate. For me, this experience of technology was exactly the opposite of that. It allowed people to come together from far flung places to listen to three people, all in different places themselves, talk about a subject of real importance in regards to providing service to people with intellectual disabilities.

It's a different way of presenting and I find it odd talking while looking at my computer screen and having no evidence, other than the numbers at the side of the screen that identifies the number of sites linked in and listening, that there is anyone there at all. There is no audience feedback, no nodding heads, no quickly grabbing a pen and writing something down, nothing.

Well, there were some rapid fire questions coming in on the comment box and some feedback from the woman who was the technical genius behind it all ... and that was at least encouraging.

When it was all over, we had a quick call to debrief and decided that since we received so many questions and had so little time to deal with them, we'd have one more where we just answered questions. We locked in the date and then said our goodbyes.

Joe had an interesting comment afterwards, he said, "all these years later, all this technology, and it's created the ability to broadcast a radio show to small groups of people sitting around the wireless." I suppose that's true. It was like a radio show.

And that's an even cooler kind of image.

A Living Hell

(Photo Description: A skeleton prays while being engulfed in flames in Hell's furnace.

Note:

I want to be a respectful as I can in the post I'm writing today. I have decided not to use the last name of the actor involved or his mother whose words I will be quoting here. His first name appears in the quote I am going to use and I don't see a way of avoiding that.

On my Facebook page I saw a 'trending' article about an actor, just 40 years old who died as a result of a car crash. Even though I'd not heard of him I read the short article in Time magazine on line as well as another in People on line. Both described his accident, which sounded horrific, and interviewed his mother who was there with him when he died.

Now, we have to remember that she just lost her son, and is finding a way to deal with that. Near the end of the article, she is quoted by saying that though he fought valiantly to live ... “Had Nathaniel lived he would have required a ventilator and would never have been able to utter one more word and would have been sentenced to life as a quadriplegic. A condition that Nate would have never have been able to tolerate. By God’s love and mercy Nathaniel was spared this living hell.”

The 'living hell' from which the actor was spared is a daily experience of many people with disabilities. In fact, those same people with disabilities don't typically report that their lives are hellish and aren't rolling themselves off cliffs. The general ignorance about life and quality of life of people with disabilities is concerning. The denial of access to media and to mainstream sources for sharing our lives, our voices and our stories is a death-making barrier. People don't know us so they imagine us. People don't hear our stories so they, without recognizing their own ignorance and prejudice, write their own. (I am using 'ignorance' and 'prejudice' in the softest way that they can be used - people, including all who read this and the one who writes it, are all unaware of their own ignorance and prejudices. I am not speaking of purposeful, stubborn ignorance or blatant, hateful prejudice.) We, as people with disabilities get shoved off into the one's upon whom God's grace had not fallen. "There for the Grace of God go I" being a statement of smugness and arrogance.

I am also concerned, even more than the idea that death would be preferable to life for a young man, that the media chose to publish the quote. Both People magazine and Time magazine chose to highlight the quote in the articles. Didn't they think that perhaps they would promoting the current agenda to see disability only in the looming shadow of the 'assisted death' movement? Didn't they think that people with disabilities might be readers of this story? Fans of this man? Affected by their words? Of course not! Because we don't exist in their minds at all. We exist in the fringes of their consciousness, where trolls and ghouls and things that go bump in the night exist. I'm willing to bet that neither author gave a moments thought to what they printed. Not a moment.

But we, people in the disability community, need to see this as a continuing failure to communicate with the larger community. We need to devise strategies to get our stories heard and our voices considered. The continued failure to do so, I think has chilling consequences.

To Men Who Pee

Photo description: A white infant's  onesie with the words 'We All Pee!' written in red.

 A Letter To Men Who Pee,

I think we can all agree on two simple facts:

1) Everyone needs to pee.

2) Everyone needs to poo.

OK, let's be really clear about those two facts. Everyone means everyone. People with disabilities poo. People with disabilities pee. Everyone needs to pee and everyone needs to poo.

I'm driving those facts home.

I think we can move on now.

Disabled stalls in the men's room, or the separate family / disabled bathrooms are designated primarily for people with disabilities or people who have other real and legitimate needs for the extra space.

Are you still following me?

Now, Men Who Pee, when you have a choice of stalls, please choose the stall that suits your needs, if you don't really, truly need the extra space, please leave the disabled access stall free for those who do. WAIT! I know what you're thinking, "I've never seen a disabled person use this stall." This is an interesting fact and you may want to think about why disabled people aren't frequenting the same places that you are. I've seen disabled stalls in restaurants with stairs - you might thing about accessibility rather than an excuse to use the stalls. Secondly, not all people with disabilities find stairs a barrier. Some need the extra space even though they don't look disabled. Yep. Some of us can pass. They lurk among you gathering data on the mysterious world of the non-disabled. What they've found is troubling, but that's another post for another time. So. Don't use it if you don't have to.

Why am I writing this to men when this part about using the stalls applies to women too? You'll see in a minute.

OK, here's the point of the whole blog.

Remember, you're in a stall, usually the only one, that disabled people, in the case of disabled access washrooms, or disabled men in the case of a disabled stall in a men's room, are able to use.

So follow this simple rule:

Don't piss on the toilet seat.

The seat lifts! It's this magical design that allows you to lift before pissing all over the freaking seat.

A disabled person, or guy, has to come in and, first wipe the pee off the seat if they need to sit, or before they lift the seat, because we do that, so it doesn't pool on the floor and get our clothes wet.

We don't want to sit in your pee.

We don't want to wear your pee.

So let's go over that rule again.

DON'T PISS ON THE TOILET SEAT.

Thank you for your time in reading this.

Your fellow (disabled) guy!

Silence

Photo Description: A 92 year old veteran stands, in rememberance and in a moment of silence.

Today, at 11th hour of the 11th day of the 11th month, many people will stop, for a moment, they will come to silence, and they will remember. That's what we are called to do on Remembrance Day. Be silent. And Remember.

I have always associated silence with war.

I see movies and documentaries that show that war was anything but silent. It was a noisy, and bloody and destructive thing. While it raged through countries, it also, when it touched them, took frail bodies and tore them apart, it blasted holes in the hearts of those who waited at home. War was not silent.

But.

Even so.

I have always associated war with silence.

My father fought in World War II. My father was wounded in World War II. But, through my growing years, I learned that my father's fight, my father's contribution, my father's individual actions were shrouded in silence.

There were words my father had but never used.

There were memories my father hand but never shared.

There were people my father lost who's names have not been said.

For there is silence in a deep part of my father.

As a growing child and then, once, again as an adult, I ask my father to tell me about the war. He told me little. I know he saw Stonehenge. I know that he was in Italy. But he didn't tell me about war, he told me of places he'd been. He walked around his silence and told me what he could see from there.

So.

I left him to his silence.

I left him to his need for silence.

And I will join him today, as I do every year, in that silence, on the 11th hour of the 11th day of the 11th month.

The Essential Components of Welcome, Inclusion and Accessibility

Photo Description: A map of Toronto's Underground PATH showing the routes through buildings, skywalks and underground passageways.

Sunday, at my place, we were buzzing with activity. Getting two kids and ourselves ready to get out the door and down to the 'meeting place' for Vita's first annual Accessiwalk was a bit of a challenge. But we managed to get there in time, and maybe even a little early. So we introduced the kids to those who were there and explained to them, again, what the Accessiwalk was.

Vita was participating in a United Way fundraiser, on that same Sunday, where people were climbing the stairs up to the top of the CN Tower. Because we have a new policy at Vita, a 'Safe Space' policy, we looked at that activity differently. In our policy we included some parts of what it is to be safe. Being safe isn't just being free of physical harm - it's also about feeling welcome and included. The CN Tower fundraiser is a fun one, it's a high profile one, but it's one that, by its nature, excludes a lot of our members and our staff. The decision was to have a parallel activity where we would walk the Toronto Underground/Overground PATH from Dundas Square to the base of the CN Tower. That way, everyone could choose the activity that best fit their needs and everyone, therefore could be a contributor.

Of those that gathered at Dundas Square were people who had bad feet or bad knees, who were slow walkers or who didn't walk at all. It was a wonderfully diverse group that was in the best of spirits as we set off. About a quarter way into the walk, we hit our first bump, one of the elevators, that was working two weeks ago when we mapped the route out, was down. We went into problem solving mode - this is the mode which people who use wheelchairs or walkers know only too well. We separated and aimed to join up again in the next building.

The next building was a problem because all the accessible elevators were shut off because it was the weekend. So we talked on the phone with the larger group and eventually met up at Union Station and went on from there problem free. All of us arrived at the end point pretty much at the same time and we agreed that it was a fun day, even with the problems.

You see the essential parts of Welcome, Inclusion and Accessibility is a spirit of willingness, a sense of humour and a creative approach to achieving the goal. I didn't say it there, at the end, and maybe I should have but I was incredibly moved that this happened at all. That, as an agency, we were asked to think more deeply about how inclusion and welcome happen, because we thought more deeply about safety and what it meant to be really safe. I was incredibly proud to see others, like me, who, though they didn't use wheelchairs, were able to choose to be part of an activity that paralleled an alternate activity.

Did we learn stuff from our first annual Accessiwalk? Yep ... like accessibility can be determined by the day of the week. Will we be able to do it differently and better next year? Yep ... the subject of next years walk came up seconds after finishing this years walk.

Inclusion doesn't happen just because you will it ... it happens because you do it.

Welcome doesn't happen just because you offer it ... it happens because you make it visible.

Accessibility doesn't depend solely on a lack of physical barriers ... it happens because minds are ramped when curbs aren't.

Knowing these things, we are simply going to be better at more than just planning next years Accessiwalk.

The Prison

Photo Description: Ruby and Sadie dressed up in Roman togas standing in front of a stone relief on fellow Romans in togas.

 At the Royal Ontario Museum's exhibit on Pompeii, at an exactly appropriate point, there is a play area for children. There's a lot to look at in the exhibit, up to then, but precious little to touch and do. Someone wisely thought of a way to build educational play, which was really fun and really interesting, somewhere around the mid point.

The girls flew to the area and immediately, alone with the other children there, threw themselves into play. The play stop was set up as a market stall in Pompeii. they had an area to measure the weights of goods being bought, with the world's coolest weigh scale. They had huge jugs (there is another word for them but I've forgotten) for people to try to lift to see the heft of them. There were other things but these are the one's that attracted most children.

As Ruby and Sadie were measuring out the weight of various fruits and vegetable, and following a table to see what a litre of apples looked like, a boy, around Ruby's age, joined in. I had asked a question and when the girls, who didn't hear me, didn't respond, his shy voice answered. I looked over to him and thanked him, he smiled. He played, at first along side the girls and then suddenly, the way children do, they were all playing together.

I glanced round to see who he was with, he seemed to be completely on his own. He wasn't, he was with 4 other children and someone who looked, not like a parent but a 'minder.' They, the other children, stood, bored, and watched, the other kids, the lesser kids, play. Smirks. Rolling eyes. Cruel comments just barely loud enough to hear. Right now, this little boy, was terribly alone.

Both Joe and I watched, and laughed, and chatted, now with three kids. I rolled over to the three huge jugs and was determining if I could get the wheelchair close enough to try lifting them myself. I may be in my 60's but I like play as much as anyone else. I had had a blast with the weigh scales, something I rarely say, and now this 'lift the jug' challenge looked fun.

When he, the young boy, noticed me over at the jugs, he came over, his voice was less shy now and becoming, instead, a little more enthusiastic. "The middle one is the heaviest," he said. His voice brought Ruby and Sadie over and they all tried. They disagreed on which of the three was heaviest. Ruby held out that the one on the left was the heaviest, Sadie and the young boy was certain that the middle one was.

This led to, "Let me try again," several times amongst the three. Everyone switched their opinion the next round and the round after that had no one certain which of the two was heavier. There was a lot of laughter as they tried and tried and tried again.

I looked over at the four and the minder. The minder was primarily on the phone, texting, looking up every few minutes. The other four, their faces had changed. They looked at the game of 'which is the heaviest' with actual curiosity. But they had been trapped. 'Cool' often becomes 'Cold' before it becomes 'Frozen.' They were imprisoned in their own judgement of the play area.

They stood and watched rather and participated and played.

It was growing time to move on, both girls were hungry for lunch, and so were we. As we left, the young man said to the girls, thanks for letting me play with you. They, to their credit, were surprised at the 'thank you,' why wouldn't they have let him play. That's what happens at play stops and spots in the ROM. They just nodded. Then his voice called out to me.

"Thank you for being so nice to me."

I am not writing this here, to tell a story about how nice I am. The point I want to make is that I wasn't nice, I didn't do anything nice, I just, I suppose, wasn't hostile. He was part of the play, he was part of the conversation, it's very simple.

I felt horribly sad that a kid thought that being treated simply as a welcome part of a group was 'nice.'

Because I have known that feeling.

Being grateful for what I should have just been able to expect.

I comfort myself by knowing that he's a good kid, he's a smart kid, he has an enquiring mind and a friendly manner.

He'll go far.

Free, as he is, from the frozen prison of cool.

Google Pride

I don't do Power Point.

Well, that's not quite true. I've put PowerPoint presentations together for other people, and I've done them for when I'm presenting with a group. But, when it's just me. I don't do PowerPoint.

However, I've just finished doing a Power Point for the keynote speech I'm doing in San Francisco in a couple of weeks. I won't be clicking away madly as I speak, I've made this to play, automatically, in a loop.

I'm speaking about Intellectual Disability and Identity.

So I wanted to put together images, photos, cartoons, bumper stickers, tee shirts, that present disability as an identity of which pride is an integral part.

So I sat down at my computer and I began to search for these images.

And I had a blast!

A freaking, fracking, blast!!

There were so many!

So very, very, very, very, very, many to choose from.

It's like there has been this slow growth, this blooming of disability pride in both political and personal forums which has resulted in out and proud images everywhere I looked.

I had to stop at 45 images.

I could have done 145 without breaking a sweat.

So, if you are bored one day, sit down at the computer and google disability pride, or disability tee shirts, or disability posters, or disability cartoons ... and just wait and see what you'll find!

It's early in the morning, I've been doing this for three hours, and I'm uplifted (not inspired) by the positive images and the devastatingly funny cartoons I found.

Ridiculously Happy Post

Photo description: Brooklyn Surrogate Court Judge Lopez Torres

On the subject of 'gay marriage' the Supreme Court of the United States said marriage: "rises from the most basic human needs; marriage is essential to our most profound hopes and aspirations."

The fight for people within the LGBTQ community to have the right to marry, is also, arguably about the desire for the recognition of the existence and possibility of love existing in unexpected places. The idea that two men might have sex might be disgusting to some, but the idea that two men might love each other is terrifying. Love changes everything. It changes the debate and it forces people to see people differently. I was always impressed, and moved, when I saw protesters, carrying placards about the right and freedom to love, the right and freedom to be loved, and the right and freedom to express that love through marriage. Not only was that argument accurate, it was also politically astute. While it's one thing to fight against 'marriage' it's another to fight against 'love'.

I had a discussion once, with a woman from the United States, who said that she couldn't support 'gay marriage' when she worked with people with disabilities who were also often disallowed relationships and who faced incredible obstacles on their way to the altar. I suggested that she might be hiding homophobia under an argument that didn't make sense. She, almost violently, disagreed and suggested I had 'tainted loyalties' to people with disabilities because I was a gay man. Well, she's right, being a gay man has made a difference in how I see things.

It's because I am a gay man that I began to write and speak about the issues of sexuality and people with disabilities. It didn't take much intellectual work to see that the oppression of the sexuality of a whole people was very similar to the oppression of the sexuality of a whole people. I found, similarly, that the discussion of love and relationships was much more politically charged than the discussion of sex. People could grant that people with disabilities could be sexual and they could grant that masturbation was an appropriate outlet under certain conditions and restrictions and with various approvals. But when I, along with many others, raised the issue of love and the right to love, THAT made people uncomfortable. Suggesting that love could be found in the unexpected space between a couple with an intellectual disability changed the dynamic. Now, breaking them up wasn't 'dealing with behaviour' it was 'engaging in emotional abuse.'

Yesterday, I read a news report that made me ridiculously happy for several reasons. It's the story of a 29 year old man with Down Syndrome, who, because he was in love with a woman and wanted to get married to her, his mother and brother fought for guardianship so that they could deny him the right to the relationship he had with his girlfriend and ensure that he not ever marry. It seemed, and this is my reading of the story, as if they thought that the fact of his disability was enough and that they expected this 'fact' to trump all other facts and that the guardianship would be granted.

It didn't.

It wasn't.

The judge in this case, Brooklyn Surrogate Court Judge Lopez Torrez, said two things I'd like to highlight. First she said something that should rock the world in its perception of people with disabilities: "The right to have a family of one's own is not reserved only for persons with no disabilities ... and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

I've always believed that, always. Always. I have presented on that fact at conferences. I have commented on this on radio programs. I have written about that in books and in articles and in columns for newspapers. But to hear it said so clearly and plainly in a courtroom, to hear it said in a judgement, in a ruling, was incredibly powerful.

Then, and this is the part that took my happiness to such a ridiculous level. She quoted from the Supreme Court Ruling on 'Gay Marriage' saying marriage: "rises from the most basic human needs; marriage is essential to our most profound hopes and aspirations."

Those thousands of protesters on the street, demanding the right to love, probably didn't think of the implications of what they were fighting for. They probably didn't think that the judgement made would effect the life of one man with Down Syndrome and one woman - the one that he loved, but it did. It really did.

But then civil liberties work that way, don't they. They don't stay neatly confined in a box. They reach out and affect other communities, bringing ideas, and perspectives, and courage, and change. The work for justice here, will bring justice there. The fight against oppression here will bolster the fight against oppression there.

The man at the centre of this, not named, is a hero. He testified at the trial. He spoke of his love. He stood against his family and for his rights. This is a difficult thing to do. But in doing it, he did something huge. He fought a fight that was not simply for his right to love, his right to marriage, he fought a bigger fight. One day others will benefit because of the precedent set here.

And he won.

There will not be crowds cheering in the streets.

But there is wild cheering in my mind and in my heart and in my soul.

Will LGBT people ever know of this victory? Will they know that their fight brought light to a dark place? I don't know.

I am going to send this to a man I know who was a leading proponent of 'Gay Marriage' here in Canada. He has a right to know. And he may know who to tell.

Me?

I'm telling you.

Two Men, Two Chairs

The last two days have been wonderful! It's warmed up, and Joe, who has lovely legs, is back in his shorts. Even though I've been tired after work, we've gone out each and every day. How often do you get 20 degree (C) weather in the middle of November in Canada?

Yesterday we met two very different men, both in big power wheelchairs like I use. The first was a guy in the bookstore that we were in. The one I mentioned yesterday when I wrote about my fellow customer approaching me. This guy's chair looked like a lounge chair on wheels. He looked so COMFORTABLE!

I was heading northwest and he was headed southeast. There was a woman standing at one of the computers looking something up. When done she looked a little bit startled to see me coming towards her from one angle and him from another. His voice came out as if it was manufactured in a gravel pit, "We're out in force and we have you surrounded!" he said, and then laughed. I broke into a grin as well. The woman at the computer got into the spirit of the thing and said, "I am captured!!" We all, then laughed, and went on our way.

Really pleasant guy.

The next fellow was also in a big chair and he was waiting at the elevator. I pulled up beside him. I had seen him push the call button and knew, of course, that he would be next in line for the elevator when it came. But, I was in a bouncy mood after the fun in the bookstore and I said, "I'll race you to the next one when it comes." He scowled. I got it, I intruded into his space, I said, "Oh, sorry, just joking around." We all waited in silence for the elevator to arrive.

When it did he got in, spun his chair around to face us. He screwed up his face and spat out "I'm not one of you!" as the door closed.

Oh. My. I wasn't exactly sure what he meant, but I'm thinking that he maybe meant he didn't identify as a disabled person and didn't want associations with one, even for a moment.

There are all sorts of ways to deal with disability. In all my rides on the bus, in all my random meetings on the street. I find that those who have identified as having a disability and are 'out' with it, just seem like happier people. This isn't scientific, but it just makes sense.

Here's to being happy, to being out and to living within identities that you have come to be proud of.

AWFULLY big book

Photo Description: book cover for 'The Alexandria Quartet' by Lawrence Durrell with and introduction by Jan Morris

"That's an AWFULLY big book!" she said to me smiling. Her tone suggested that I'd picked up something I shouldn't have and needed to put it back. The book, The Alexandria Quartet, is big, that I grant you and it's 900 pages is daunting, but it's next on my list of books to read. The bookstore had only a couple of copies and I'd been reading the back of the book when she spoke to me. How she thought that the book ended in my hand by accident, I have no idea.

I said to her, patiently, "Yes it is an awfully big book, but every now and then, I find, it's good to settle in for a nice long read."

She looked at me startled, "Oh, I'm sorry, I thought you were ... " Then she was lost for words. Or, perhaps more accurately, she didn't want to use the word that finished that sentence.

After a moment's pause, she said, "I shouldn't have spoken to you in that tone of voice," and then she caught herself again by continuing, "it's just that I thought ..." Stuck again. Another unfinished sentence.

"You thought I had an intellectual disability, although you may have used another word in your head, but I don't. But I can tell you this, no-one likes being spoken to in that tone of voice. Not me, not people with intellectual disabilities, not children .. no one."

I'd have been fine if she left it at that and headed off, but she didn't.

She said, "But ..."

And that's as far as I let her go, because there is no 'but' here. It doesn't matter what she thought. It doesn't matter what she intended. The only things that mattered is that she felt that disability gave her permission to speak to me in a tone of voice that NO ONE likes or appreciates. NO ONE. The idea that there is a tone of voice that is reserved for people with intellectual disabilities is patently ridiculous. Patronizing is patronizing. Offensive is offensive.

"There is no 'but,'" I said, "you made two assumptions, one about me and one about how you are allowed to speak to the person you thought I was. Both are wrong. Just apologize and let's move on shall we."

"You don't have to be mean," she said.

"I'm not mean, I'm not bitter, I'm just interrupted and insulted - typically people apologize for that, if you are above apologizing to someone with a disability, then please, just leave me alone and go about your business."

"I'm not above apologizing to anyone, but I won't apologize to YOU!"

"I'm good with that, I wonder if you will still be this evening at around five."

She hadn't left, so I did.

I went an bought my AWFULLY big book.

Sometimes they need ....

I was riding the bus with this rough and tumble guy who I've ridden with before. He's a cool dude, and, trust me, dude is exactly the right word. He's big like me. He isn't shy about his size, or his disability, or speaking about the prejudice that he experiences. It's no surprise, then, that we get on well.

He was telling me about his scooter. It's a big machine and he's proud of it's power to get him around. He takes very good care of it. He also uses a walker, but only for very short distances. He was telling me about a recent trip to the hospital wherein he and his friend, who's been with him on each ride, went for a coffee at Tims.

He told me that a woman, sitting at the next table, asked him about his scooter. He showed her the various features of it and, "I let her know I was proud of it and of how I kept it. This thing is cleaner that I ever am!" She asked him how much it cost and how he came to pay for it.

He thought the question was a bit personal but, "Well, I'm a talker." So he told her what he knew about the scooters cost and about the funding that paid for the scooter.

"You know what she said to me?" he asked.

I said that I could only imagine.

"She said, 'Why are you so proud of the scooter? My tax dollars paid for it.'"

He said he got mad and said, "I worked for thirty years, MY tax dollars paid for this. You got kids?" He said his tag on question caught her by surprise and she said that she did.

"Well, I paid school taxes my whole working life and I didn't have kids. I'll have my money back now please. Tens and twenties will be fine."

"That shut her up," he said.

Then he paused, "Sometimes they just need shutting up, not education, not understanding, just shutting up."

I nodded, because of course, I agreed.

DSP (Direct Support Perfection)

Photo Description: A large clock fack with a person wearing a white helmet is adjusting the minute hand.

This morning hit me like a hammer blow.

I think it's because my body has been through several differing time zones in just a few days. From being adapted to the time in Edmonton, switching to Eastern time was tough but then a couple days later going through the switch in time with turning back the clock. I woke up, after a decent sleep and just couldn't move. I was 'zoned' out.

Joe was up and doing fine so I asked him to let people know that I wouldn't be in to work today. I felt horrible. Just horrible.

I got up and sent out the newsletter, let this be the announcement that the November issue of Service, Support and Success has been released and you can get a subscription by emailing me at dhingsburger@vitacls.org, and answered a few emails. I wanted to be up to date.

But I had the luxury of making that decision. Of knowing that I wasn't well and that my mind was foggy and my body wasn't adjusting.

While doing emails, an 'all staff' email came through alerting, surprisingly, 'all staff' to the time change and reminding everyone that they may need to be a little more patient as everyone adjusts to it.

I was immediately struck at how kind the email was. We need to be reminded, on occasion, to be alert to, changes, large and small, and of the effect they can have on people.

Even though I was tired, and even though I was suffering from 'zone-itis' myself, I smiled when I saw the email.

Let me take a moment just to say that I think that direct support professionals can be some of the nicest people in the world!

Awareness + Kindness = A Woman In Edmonton

Photo Description: A group of words around the city name, "Edmonton" these words are thought to be reflective of city in some way.

We pulled into the disabled parking bay right at the door to the entrance of the conference facility. It was perfect getting a place so close, both for the obvious reason and also because Joe had a big suitcase full of books for the book table he would run while we were there. Just as we were congratulating ourselves on the spot, two men along with a woman came out of the building, it was clear they were attending the conference that I was presenting at. They came round to stand right in front of our car where the hotel had put an ashtray for smokers.

Shit.

I don't mind being up in front of people and talking, although it still makes me really, really, nervous to get up and speak, but I DO mind circumstances turning me into a circus freak. I am not alone in noticing, as a disabled person, when I say, it's an odd thing that some non-disabled people really enjoy watching disabled people get out of cars. Now these three came for the purpose of smoking, not watching, but then it would be just natural for them to form an audience.

What to do?

I was about to ask Joe to move us to a more private spot when the woman saw the wheelchair come round to the side door of the car. She quickly scanned the scene and saw that there was another ashtray on the other side of the door. She spoke quickly to the two men who were with her and indicated that they should go over to the other side. They looked a bit confused at first by her request and then, on realizing, followed her over to the other side of the door.

We now had complete privacy. I got out. I got into my chair and Joe and I both said at the same time, "No one has ever done that before!" I rolled around the side of the car towards the entrance and then made a decision. I turned and rolled over to where they were standing. I told her that I really appreciated her act of both awareness and kindness.

Then we headed in.

It was a great way to start the day.

Kindness matters.