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?

Tuesday, November 17, 2015

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.

Monday, November 16, 2015

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.

Sunday, November 15, 2015

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.