Saturday, November 28, 2015


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.

Friday, November 27, 2015

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.

Thursday, November 26, 2015

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.


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.

Wednesday, November 25, 2015

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.


Repeats itself.

Like a demanding child.

Until it's heard.

Monday, November 23, 2015


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.

Friday, November 20, 2015

Leaving Welcome

Image result for building fences cartoon
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.  

Wednesday, November 18, 2015

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.







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.


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?