Tuesday, February 21, 2017

He Is Smiling

Photo Description: Brendan Mason, wearing glasses and a brown tee shirt. He is smiling.
A friend of mine from Wales posted an article on Facebook about a man, Brendan Mason, who was beaten to death, while his attackers filmed him being tortured and humiliated. In my friends comments she mentioned the attack as one being based on hate. I went to one article and then another and then another and then finally, this one and I didn't see what I expected to see there, mention of hate being a motivator for the crime.

I messaged my friend in Wales to ask her a question but before she had a chance to respond, someone else posted an article that had the answer both in the text and in the headline. Yes, he had a "learning difficulties" which is what we call "intellectual disabilities" on this side of the pond.

We, as a community, need to be asking hard questions of the press and the justice system? Why was this not prominently mentioned in all the news articles about him? Why was it not made clear that his assailants manipulated him into thinking friendship existed between them and then conspired to beat him for fun? Why was the context of disability not discussed in these stories, and from the stories about the trial why wasn't a part of the court proceedings?

Isn't is responsible for the media to inform the public? Isn't it responsible of the courts to understand crimes against people with disabilities in the context of disability? I think both have failed Brendan and the community of others with learning difficulties (intellectual disabilities) and their families and support workers. We need to know about these crimes. We need to know how the perpetrators got to him, how they manipulated him and then the level of violence they sunk to in attacking him. We need to know these things, not to scare us, not to have us hiding in our homes, but to prepare us.

To prepare people with intellectual disabilities so that they know the dangers of 'pretend friends' and to watch out for signs of manipulation. To prepare parents and support workers so that they can do the teaching and the training necessary to live in a community where crimes like these are not only possible but distressingly common. Look again at the picture at the top of this post. Brendan Mason is looking out at us smiling. He was smiling. His life gave him moments like this. If his life with a disability was worth something to him then maybe it was worth a mention.

Proper reporting and proper judicial examination of motives and of hate alert us all. It makes us responsible for knowing and then for doing.

We know this can happen.

We know this did happen.

We know we must respond in some way.

We cannot sit with the knowledge of Brendan's life and Brendan's death and not be moved to DO SOMETHING. We can't just be silently outraged. We can't believe that Facebook posting is an effective tool for change. We can't emoticon our way out of this. We are responsible because, even if we don't know Brendan Mason, we mourn him. We are responsible because we know people like Brendan Mason who could be tricked in the same way, who could be manipulated by offers of false friendship, who would do what was asked because we taught them the ways of compliance without question.

We are responsible.

So action is the only way forward.

What can be done?

We can properly and responsibly inform each other about the tragedy of the murder of one of our own.

We can ensure that those who we parent or support have the opportunity to learn about bullying, social and physical violence, and develop strategies that work to keep people safer.

We can ensure that letters go to the media that hold courts and reporters to account for how they account themselves when crimes against people with disabilities come before them.

We can assert ourselves as a community in support of each other and in support of a world that takes violence against people with disabilities seriously.

Hate crimes against people with disabilities are growing more frequent (there is data on this) and the level of violence involved is also increasing.

Why don't we know about this?

Because, for some reason, who Brendan Mason was, and how he lived his life, was considered irrelevant. Well let me tell you this, for those of us who live our lives with disabilities, the context of 'disability' is never irrelevant and it's never shameful, and it never needs silence.

Silence = Death ... a slogan from the early days of AIDS, is one that should have taught the world that Silence = Consent.

Don't be silent.

Don't consent.

Doing damns the darkness.

Monday, February 20, 2017

Take That!

I had just found a table and taken my seat waiting for Joe and the kids to come, laden with trays of food, to join me, when the man at the next table caught my eye and then glanced over at two women and two children at the table across from us. I looked and saw a lesbian couple with their two children. In the briefest of moments I found it fascinating that both kids called both women "Mom" and both women knew which one of them was being referred to!

Satisfied that I'd seen them he gestured again to another two women sitting with one child a little further away. The two women were holding hands and chatting as their child coloured in a colouring book while distractedly eating fries from his plate.

I was now really curious as to why this man at the next table had brought me into his confidence and pointed out the two tables. I looked to him. I could see then, just by the smirk on his face, that he hadn't brought me into his confidence but rather he'd attempted to bring me into an alliance of sorts. The constant presumption of heterosexuality annoys the hell out of me and in this case it really pissed me off.

Then he leaned over and said in a stage whisper, "It's Lesbian Mom Day here today." Then he laughed. Like that was a funny observation and like I would agree that these two tables, amongst perhaps a hundred or more tables being occupied by lesbians was an indication that lesbians were out, in force, intruding in public space.

I admit.

I was prepared.

I had kind of sussed out what was going on.

I leaned back to him, making him uncomfortable with my proximity, and I whispered back, "Yeah, isn't it great! Way better than 'bigot day' isn't it?"

Perhaps he threw his back out the speed at which those words and my presence threw him back in his seat because suddenly he was uncomfortable sitting there and quickly got up and left.

Have to say: didn't miss him.

Sunday, February 19, 2017

My Rule Book

We headed over to the theatre with some real anticipation, we were looking forward to seeing "My Night With Reg" at a theatre just down the street from where we live. We are very familiar with the seating plan and, even though they insisted on taking us to our seats, we found our way easily. The theatre was filling quickly and people were pouring down the aisle. The accessible seats are at the very back of the house so after we were settled we just watched the crowd arrive.

Then beside me was a woman, a really large woman, with a really bid walker, appeared beside me. She got to her seat, which was at the end row, an aisle seat, just a little ahead and to the right of us. She got into her seat with some difficulty and an usher folded up and took her walker away for her. The seats are small and she looked uncomfortable, but she was in and seated, I knew what that felt like.

A moment later, the barest moment later, two women came who had seats in the same row as she was sitting in. She looked up at them with the question, "What happens now?" on her face. They pointed to where there seats were and she said, "Okay, but you'll have to climb over me." They abjectly didn't want to. After a long pause, she said, "Well, I could get up if that's what you want." 

The two women looked at each other and then gamely tried to slide by her without her getting up. She was very, very, big and there was no room. The amount of body contact between them all was considerate. I had to look away. When I looked back up, the two women were in their seats and it was almost time for the lights to go down.

I discovered, in myself, that I have all these rules for how to be fat in public and how to be disabled in public. These rules that I live by. Without question. I live by them. They exist to make me comfortable but also, to an even larger extent, to make people without disabilities feel comfortable with me being in their space.

This woman broke almost all of those rules.

AND I HAD A REALLY HARD TIME WITH IT!!!

I felt embarrassed for her.

I felt the shame that I thought she should feel.

I had empathy for those getting by.

I had, well I don't want to tell you what I had, for the woman at the end of the aisle.

I discovered, again, as I do over and over and over again, that I have deeply buried prejudices in my heart and soul. I have a judgemental vein that robs me of the ability to be compassionate or understanding or even a little bit forgiving.

When it was over, Joe and I waited until the aisle had cleared. Another rule I follow. She didn't, she got up as the usher unfolded her walker, leaned on it, stopped the flow of those exiting to join in and head out. Finally, it was our turn to go.

We turned north out of the theatre to head home and as we did I noticed the big woman walking alongside the two women who had climbed over her. They were all amicably talking about the play and what they had thought about it. Friendly strangers chatting about what was important, what they'd seen, not how they were seated.

Thank God those women had bigger hearts than I did.

Thank Heavens they had a softness in their soul that I lacked.

But me, I've still got my rule book. I can't help it, but I do. I'm not giving it up, I worked to hard to write it. I just want to realize that it's MY rule book.

And mine alone.

Saturday, February 18, 2017

The Announcement

I saw the announcement on Facebook.

A woman with Down Syndrome that I met a few years ago is getting married. I was so happy for her and immediately wrote my congratulations. She's a lovely woman, will make a lovely bride and the groom, a man I do not know, is a very lucky man. I scrolled away from that post to others and eventually took a highly scientific quiz to determine the name of my inner sprite. "Facebook keeps me informed," I tell people, when in fact its cheaper and more scientific that introspective therapy.

It was almost a day later when I realized that, for the first time, the news of a person with an intellectual disability getting engaged and looking forward to marriage, was just news. It wasn't long ago that any announcement of any kind of romantic relationship between those with intellectual disabilities would stop me in my tracks. It was big news. Not that the news of the woman that I've met getting married isn't big news, it is, of course, it's life changing news. But I mean BIG news, news that shocks rather than surprises.

I'm no longer shocked to see people with intellectual disabilities getting married.

I need to say that again.

I'm no longer shocked to hear about people with intellectual disabilities getting married.

I remember a young man named Dale who, when I was talking to him several years ago, distracted me simply because he was wearing a wedding ring. I couldn't take my eyes off it. I'd never seen one on a person with an intellectual disability. This was several years ago but not a long time ago.

That ring and these announcements and their resultant expectations are the result of a lot of different things. They are, of course, a testament to the parents who parented adults, parents who saw their child's potential to grow into relationships, parents who were willing to push by medical and societal predictions and prejudices and just parent the child that the got, not the child they were told they had. They are also a testament to those who supported these children as they grew into real adulthoods, a major victory, the teachers, and teacher's assistance, the direct support professionals, the behaviour therapists, the specialists and the generalists and everyone in between, who managed to dust off and actually use the tools that would lead to a real life in the real world.

But most of all they are a testament to the driving force of the will and unbreakable hope of those with intellectual disabilities themselves. Throwing tantrums when treated with disrespect. Staring down the harsh glare of 'good enough' and demanding instead, 'better.' The grabbing of low set bar of  expectation and pulling them up in an exercise of power that would change their lives.

Parents can prepare.

Support professionals can teach.

But people with intellectual disabilities do.

All are important, but it's the doing that damns the darkness.

Yes, it's the doing that damns the darkness.

Friday, February 17, 2017

In Anticipation of Us

On Wednesday I arrived at the venue where I was going to speak and Joe went in to check it out. Sometimes there are better, closer, entrances for us to use. When he got back he told me that we were at the right place, at the right entrance and that he thought I'd like the hall. As we made our way towards the hall Joe was describing it as a lecture hall, complete with stage. I clenched inside. These often don't have ramps and I'm usually then cramped up front at the base of the stage, it's not a comfortable place to present from.

But I was wrong, not only did it have a ramp but a beautiful one that gave me easy access to the stage itself. Had the feeling from that moment on that it would be a good day. I remembered a couple years before using a rickety, improvised ramp to get to a stage and I had the room set up guy say, in explanation for there being no actual ramp, "No one expected disabled people to ever need to get up here." I don't think he realized what he said. Suggesting that people with disabilities would never need access to a lecture hall stage because people with disabilities had nothing significant to say, or if they did, they never would because of the shroud of shame we live under. I was offended for weeks about that remark.

But here.

I had been anticipated.

(Not me personally, of course, but people like me, all people like me.)

When I first became disabled, sitting in that wheelchair for the first time, I had many thoughts about my life to come, but one of the primary ones was about my future as a lecturer and a trainer. I suspected that the disability might change what I had to say, even if slightly, but I worried that suddenly, I'd never be on a stage again, never teaching, again. I have always known that it's a privilege to do what I do and get the chance to educate or challenge or inform, but I didn't want it whisked away because of my disability.

Clearly I have continued to lecture and continued to travel to do so and that I manage in whatever venue they arrange for me, with the exception of those that I couldn't get in because, in one case there were 7 stairs to the front door and in another 12. But for the most part, we adapted what wasn't adapted and really enjoyed those where no adaptation was necessary.

After lunch I rolled back down the ramp to the stage, rolled out onto the stage, and began to prepare for the afternoon. I watched as people strolled back in from lunch. I watched them take their seat. And I realized something, all morning, from the moment they all arrived. None of them were surprised to see a wheelchair user on a stage. Now some of them knew who I was, but many of them did not.

It seems that the idea of being trained by someone with a disability was simply unremarkable to them, as an audience. How remarkable that is, isn't it? How incredibly remarkable.

Wednesday, February 15, 2017

CRUNCH!

Until arriving at this hotel last night, I've done really well with using my own power to get myself around. It's something I'm proud of because it's a goal that I set for myself. Even yesterday, when the venue had a difficult pathway to the disabled entrance (it always annoys me when we are expected to go in a different door) I managed to push myself several meters on a steeply sloped sidewalk and then turn a sharp left to face the door and push through it. It was a tough push, but I managed.

When we arrived here last night, I immediately noticed the slope up to the door. It was ramped such that it was straight up to the door but, again, it was pretty steep. I got out of the car, got over to the bottom of the ramp, got my front wheels up over the small bump created by the fact that the curb didn't evenly touch the driveway. The on one push, I knew I was defeated. It wasn't the slope, although it was steep and I'm not completely confident that I could make it. It was the salt.

The entrance way was covered in a thick layer of salt. Big chunky pieces of salt. My front tire crunched on a couple pieced and then was stuck, I simply couldn't push through it. Joe was up at the door not really paying attention, and nor should he, I've been doing this independently for quite a while. I waited as I fought an internal battle. I knew I couldn't do it. I knew I didn't want to have help. I think this isn't an uncommon thing for people, I think maybe for disabled people that battle means something slightly different than it does for others, thought I could be wrong about that.

In the end I called out to Joe for help and we, together, got me up the slope and through the salt and into the hotel. Once through the door, though, my need for help was over and I went to register while Joe went to park the car.

For maybe an hour after I had to struggle with what happened. I had to examine myself to see if I gave up to easily, if I should have tried harder. Then I had to examine what asking for help meant and, then more reasonably, what it didn't mean.

Disability brings with it, for me, all these moments where my definition of myself is challenged and my own internal ableism and disphobia are up at the front of my consciousness. In a way, I'm glad of that. In a way I'm exhausted by it. I finally settled all the discussion in my head and was able to move easily away from that to figuring out, along with Joe, what we were having for supper.

The only thing I'll tell you about that, was that I insisted, for my meal ... no salt.

Tuesday, February 14, 2017

Valentines, Actually

Today is Valentines day.

And I think of people with intellectual disabilities who live in systems that forbid them love and marriage.

Today is Hearts and Flowers day.

And I think of seniors residences that forbid husbands and wives rooms together.

Today is Chocolates and Candy Kisses day.

And I think of all the countries that kill, imprison or torture people for loving who their heart bids them love.

Today is Cards and Poems day.

And I wonder why, in a culture that proclaims love, in faiths that espouse love and in families that claim love, so many people are forbidden ...

love

and marriage

and kisses

and gentle nudges against the ear

And I wonder how many people with disabilities are driven by love into basements and garages to meet and touch and hold ... and how many seniors hold hands under tables and kiss when nurses aren't looking ... and how many people risk death or imprisonment or torture just to feel their pulse slamming  in their ears at the barest touch.

I wonder if love hidden, if moments forbidden, if dangerous meetings are the places where Valentines, today, actually happens.

Monday, February 13, 2017

Hearts and Flowers

Valentines day.

Flowers and chocolate everywhere. Plush dogs and cats holding plump felt hearts between tiny paws. I'm diabetic, there's nothing about this holiday that appeals to me. Neither Joe or I celebrate the day. Even so we aren't furry and green and need our hearts to grow three sizes for the one day a year that 'love' is fully on display. Ruby and Sadie both love Valentines so yeah, they got a stuffy and chocolates without either of us mentioning our thoughts about the day. I'd like to call that restraint but it's really respect.

Anyways, we don't Valentine.

Ever.

Never have.

Even though I love to shop, I roll by the 'seasonal aisle,' where for all other holidays I'm often seen prowling, without even slowing. I see tired people buying stuff and standing sort of embarrassed and sort of wondering why in line ups with their arms full of stuff that is somehow supposed to communicate, "I love you" better than words and I know that they know that nothing really does.

Today though, Joe and I had a particularly and peculiarly Valentines experience. Can't say I've ever had one of those before, and I will admit it felt nice.

We'd been doing some shopping to pick up stuff to make dinner in our hotel. We stay in hotels, when we can, that have kitchens because we like to have some control over what we eat and as vegetarians it's easier that 20 questioning delivery places about chicken stock and lard.

The fellow who was bagging groceries, a guy with Williams Syndrome was, not surprisingly, chatting with great animation with the woman in the line up in front of us. He spoke quickly, was very funny, and always looked to see how she was responding. She chatted right back at him, using his name, they clearly knew each other in one form or another.

Then we pulled into place he looked over to Joe, who was in front of me, and then to me. To our great surprise he said to Joe, "A happy Valentines to you and your partner!"

I saw him see the shocked look on our faces, I mean no one ever recognizes us as a couple, and I quickly said, "Thank you very much!" Joe added his thanks.

The clerk at the till, a young gay man, stopped, looked up from scanning and then scanned the two of us together buying groceries. He burst out into a grin and joined in the conversation.

It felt good. Not so much to be wished a "Happy Valentines" but to simply not be assumed to be either heterosexual or single.

I'll take that over chocolate or flowers any day of the week.

Sunday, February 12, 2017

Well, when ...

Joe waited outside with our shopping and I went in to go to the toilet. I checked the disabled stall and it was empty. Then I busied myself by getting the door open while turning my chair to back into the space beside the toilet. As I was doing this a man of about my age stopped to watch me do what I was doing. Others had come in, it was a busy washroom, but none had taken interest in what I was doing. He however was fascinated. I pretended he wasn't there because, well, what else do you do? I knew that I was seconds away from being in and closing the door.

Then he asked me a question, "How do you do it"

"He is asking me how I take a shit," I thought to myself, a bit shocked, and thought further "What a personal question."

"Pardon? I asked, incredulously.

"How do you do it?" he said and this time I heard what he said.

"How do I do it," I said looking at him in some earnest and he nodded, looking back and forth between me and the toilet, "Well the best way to explain is that when a daddy loves a mommy ..."

Suddenly he heard, in his mind, the question he'd asked. His face blistered with heat and he rushed to a stall. The guy standing at the urinal was laughing so hard that he said through his laughter, "Shit, I'm going to piss on my shoes."

Me? I was just happy that I had a new answer to that question, "How do you do it, really , how?"

Can't wait for the next person.

Saturday, February 11, 2017

My Dad's Nurse

It's been a couple of weeks now that I've been dealing with hospitals and nurses and long distance calls. My father fell and broke his hip. This lead to all sorts of complications and for one reason or the other I became the family contact person. Mostly my job has been gathering information from the nurses, first in the ICU and then on the ward, and passing it along to my mother and to the rest of the family. I've had only a few clashes about information flow which led to the social work department helping out, but mostly it's gone fairly well.

When Dad was first injured he had to be transported to a hospital in another town for surgery. He was there for several days and just yesterday he was well enough to be transferred back to his home town. He was looking forward to it, my mother was looking forward to it and so was I. It was a real sign of his recovery and, at 93, a miracle that just kept unfolding.

Today when I called the ward of his new hospital, I was a little on edge. What kind of reception would I meet from the nurses, how was my father doing after the trip, all of that anxiety made me misdial, twice. When I got ahold of his nurse she was friendly and informative and quite welcoming. But then something happened that put me completely at my ease.

She tried several times to transfer me to the portable phone so she could bring my call to my father. She kept messing up, once sending me off to the wrong extension and three times just simply, nothing happened. I could hear her getting flustered through her apologies but then ... she just laughed. A hearty laugh. She apologized for laughing at herself and the situation knowing I wanted to talk to my Dad.

But, good heavens, that laugh made me feel so good. I want people who can laugh at stressful situations to care for my Dad. I want people who don't park their sense of humour at the door to be the one's that help hi get up. I want friendly, smiling, laughing people to encourage him to one more step today than yesterday.

I want that.

It's amazing how, when I hung up from my chat with my Dad that, after I mulled over all that he had reported, it was her laugh that I remembered, and it was her laugh that comforted me.

Friday, February 10, 2017

Pardons and Apologies

I've been reading articles about various countries pardoning LGBT people who had been convicted and imprisoned in the past. I thought if it in context of the apology, here in Ontario, to people with disabilities, who were imprisoned, without dignity of trial, into large residential facilities. And the context of the apologies given by the Canadian government to First Nations people for brutally ripping children from their families and placing them in residential homes to suffer abuse akin to torture with the goal of eradicating their cultures and languages.

Pardons and apologies all sound like such good ideas. Maybe they are. Maybe it's part of the healing process for those individuals who experienced the brutality of being governed by good intentions. In every case, the government thought it was acting in the best interests of society or of the individuals themselves. I'm sure that many of you are familiar with the C. S. Lewis quote, which I'm quoting with severe misgivings:

"Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be most oppressive. It would be better to live under robber barons than under omipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for the do so with the approval of their own conscience. They may be more likely to go to Heaven yet at the same time likelier to make Hell of earth. This very kindness stings with intolerable insult. To be "cured" against one's will and cured of states which we may not regard as disease is to be put on a level of those who have not yet reached the age of reason ..." C. S. Lewis

And let's be clear, the apologies and pardons have been given with good intentions. They are often beautifully worded and delivered with the right degree of regretful emotion by whatever head government reads them. The ceremonies are profound a moving. I am in no way mocking these events, I was moved to tears by the Ontario apology to disabled people.

But I wonder if the giving of the apology means that those who suffered under the tyranny of good intentions are required to accept? Those who were imprisoned for being gay, is there an option to simply not accept the pardon? Can disabled people individually or collectively say, "Thanks but no thanks." Can First Nation's people simply turn their backs on the words from Ottawa?"

Are pardons and apologies less about addressing the causes that lead to imprisonment and abuse and more about an attempt to erase histories? To 'make better' now at this point in time, so that you don't have to deal with further ramifications in the future. "But we apologized for that, don't bring your paint, your deeply rooted trauma to me now, it's done, it's finished, it's like it never happened."

I heard one person say, after the Ontario apology, "Well, finally, that's done." I wondered, but did not say, well what's done? People with intellectual disabilities are still underfunded, they are still subject to support providers and I'm guessing abuse didn't disappear instantaneously, and society, well, it's still not that welcoming to disability of any kind but intellectual disability in particular.

Apology should start the process of change. Apology without change is like a hurricane with no wind. Pardon without action is like a tool that's never picked up or used.

Had I been imprisoned, in jail, rather than behind the locked doors of a stoutly built closet, I don't know if I would want the pardon. I don't know if I'd want to hold the power that the conviction now gives me taken away.

What power?

The power to demand recognition as a representative of a time when prejudice had a gavel.

I don't know if I'd accept apology for the same reason.

Nothing changes the past. Unless there is active work to change the future, unless the apology or pardon comes in the midst of strong legislation and appropriately funded efforts to create a welcoming world, it is meaningless.

I'm not sure it should be accepted.

(Please note, I am speaking from my own perspective and my own world view, I am aware that there are those who truly suffered at the hand of the government and for whom the apologies and pardon deeply matter. This piece is not a criticism of that, it is not my right to tell anyone how to feel about anything. However, I maintain my right to consider, in my own small human way, really large and important issues like these.)

Thursday, February 09, 2017

A Letter Answered

A couple of weeks ago I wrote to a new site about their entertainment coverage. I'd written to them before, without answer, but was moved to do so again. The issue was that when they reported on upcoming events that we wanted to attend, there was no mention of access.

The first time I wrote was because they published a review about a play happening in a performance space that I'd not heard of before but it was clear from the article that it wasn't typically used for performance and that part of the point of the review was how that space worked for the telling the story within the play. I tried to get information about that spaces accessibility and was unable to do so. So, I wrote.

I suggested that as the reviewer of the play could have easily put into the review the specifics regarding accessibility. I mean it doesn't take training to notice a flat entrance and an accessible loo. But no one answered. I was annoyed but it's not like that was the first time a letter of mine has been filed under 'g'.

This time I was writing because the same new site has weekly listings of events. I wanted to know if the person writing that column could include access information. Again, it seemed like a natural thing to do to let readers know if everyone can get in and everyone can go pee. I expected nothing but I received a response from the writer of the weekly listings who was interested in talking to me about access. He stated, right off, that he'd like to try and meet the request of providing access information, suggested that there was a learning curve that he'd have to master and said that he might contact me for further information. I was beyond good with all of that.

I heard from him again yesterday and he told me that his next listing would be 'light' on accessibility because he didn't find much information from Facebook pages or websites about access. He realized he was going to have to do more digging. I wrote him back and said that there was the big "ah ha" ... it's not easy to get the information, that's why him doing what he's doing, in digging and getting that information is so important.

You know it's nice when someone says, I want to do what you asked, I need to learn how to do it and then follows up with an 'I'm trying' ... and with a statement of discovery - "this is actually a barrier." So good on him and good on the website.

I'm not naming him or the site now because I don't want to shine a light on his attempts without his permission but I will ask him after he's mastered the art of accessibility reporting. I think that this kind of effort demonstrates a true commitment to both personal growth but also to diversity.

I don't think one comes without the other.

Wednesday, February 08, 2017

What We Already Have

Picture Description: I am on stage, holding a microphone in one hand and a large display cheque in the other

Last night I had the honour of participating in a cheque presentation ceremony. Last summer we in Ontario undertook a province wide effort to raise money from the Community Living sector for people with intellectual disabilities who had been affected by the fires that raged through Fort McMurray last year. We had contacted Choices, the agency that supports people with intellectual disabilities, and received permission to raise money on their behalf.

Throughout the province people held bar-b-ques, and bake sales, and hosted spaghetti dinners, and sponsored benefit lectures, and sold jewelry and tee shirts. Organizations participated, hospitals participated, self advocate groups participated, it was a joint effort. Money came in. And so did stories. So many stories, of what people did and why they did it. We pulled together for people with disabilities from another province and we pulled together to demonstrate our belief in the concept of 'Community'. In this case, we were supporting the community of people with intellectual disabilities.

I learned several years ago that when tragedies happen, when catastrophe strikes, there is very little reporting on what happens to those of us in the disability community. What happens to those who need support during catastrophic times? It's an important but seldomly asked question. What happened to people with disabilities who were in the towers on 9/11? What happened to people with disabilities when the tsunami struck? What happened to people with disabilities in any part of the world when their world collapses?

We talked about this last night and the term 'shadow community' was used to describe a community that lives in the dusk between the media spotlight and the darkness of death and despair. I thought it an appropriate term. But what also struck me last night was that we as a community, the disabled community, is large, and caring, and compassionate. We don't have to wait for the spotlight to come to us, we can all bring whatever light we have to bear on situations that confront us, all of us, no matter where in the world it happens.  

And that's what we did.

It was an honour and a privilege to be asked to participate in the cheque presentation to Allison Pardy the Executive Director of Choices. It was moving to hear her speak about how our efforts in Ontario raised the spirits of people with disabilities in Alberta, "(People with intellectual disabilities) learned that they are not alone," she said.

They aren't.

Because we are community.

Sometimes we speak about 'community' as something to strive for, to work towards, to be deserving of ... but maybe it's time we recognize that we already are a community, and as community we need to support and live with a spirit of generosity within that community even as we strive for our place within that other, larger community.

Tuesday, February 07, 2017

The Great Green Slime Disaster

(Dear Reader, I lost control of the spacing on this post and can't get it back, I'm sorry.)

Conversation this weekend:
Ruby: Our slime didn't work!
Sadie: Yeah, we must have done something wrong.
Me: What do you mean it didn't work?
Both: We just have green sticky stuff, not slime.
Me: You thought we were making slime!?!
Both: Yeah.
Me: We weren't making slime!
Ruby: Yes we were.
Sadie: Yeah, it was supposed to be slime.
Me: No we were making fun.
Both: What?
Me: Did you have fun?
Girls: Yeah.
Me: Did we laugh?
Girls: Yeah
Me: Then the recipe worked.
Girls: (pause to think) No, it didn't work.

They thought I lost the argument. I thought I'd won it. But we left it lie there. I stand by my convictions though. We had a blast. We were noisy and messy and a little outrageous. That was the point. At least I thought that's what we'd set out to do.

It mattered to me that the girls realized that the process was as important as the product. I want them to value fun, from now, at this young age, throughout their life.

I thought about this on the way home from work. Joe was talking about going out once we got home to go do something that we needed to do. It was an important task to do, and it was time that we did it. But I was uninspired and tired from work and just generally uninspired.

Then I thought about another task on the "to do" list. It's a task I'm looking forward to doing. It's one that I'm a bit excited about. It's a little bit fun. It's not as important as the other task. But, let me say again, it's a little bit fun.

Just as we pulled in and before Joe got out to get out the wheelchair, I said, "I've got another idea." I told him that I was tired and didn't feel like doing what we needed to do but that I'd really like to go and do something that was a little bit fun and would make me feel a little less tired. He agreed that it needed doing too so why not.

We went and did something that was a bit fun.

I purposely chose to do something that would make me smile.

When I got home, I wasn't as tired and I wasn't as stressed.

Maybe that's an outcome too.

Maybe that matters too.

Maybe I've got to learn the 'Great Green Slime Disaster Rule" - sometimes it's important to choose to see fun as a legitimate goal, an important outcome, to aim for.

Go have a Green Slime kind of day.

Monday, February 06, 2017

10 O'clock, A Pear and My Freedom,

I have a 10:00 o'clock pear. Every day, at 10, a pear. I love pears, they are my favourite fruit, and no, I don't get tired of having a pear, every day, at 10. I look forward to 10 o'clock. I wait right until 10 o'clock. Not 9:45 or even 9:55, it's called the 10 o'clock pear for a reason. I have many routines in my day, this is one of them.

But, right now, it's much earlier than 10. I've just had my breakfast. I still felt a bit peckish and decided I wanted something sweet. I know that I've got my 10 o'clock pear and I also know it's the only pear we have. Joe is going to buy more pears today. If I have my 10 o'clock pear now, I won't have it for, obviously, 10 o'clock. But, and this matters, it's my decision. I'm an adult.

As a result of all this, I'm eating my pear, right now, I'm chewing on it as I type this. It's so good. It tastes perfect after my breakfast. I know I'm breaking with my routine and I know that tomorrow I'll go back to having my 10 o'clock pear and I know that I won't have a pear when 10 rolls around today. Okay. I'm sort of good with that. I'll have the memory of my breakfast pear.

You know why I am telling you all this? Because, I know that I take for granted that I get to break with routine at eat at 8 what I normally eat at 10. I don't have to ask anyone. I don't have to have anyone sitting down and talking to me about the consequences of eating at 8 what I normally eat at 10. I don't have to have someone's permission to break my own rule.

I don't have to have a team stand around and discuss whether or not, after breakfast I NEED a pear. They may think that I only WANT a pear and that they are there to meet NEEDS not WANTS and therefore I can't have my pear until 10 o'clock because that's 'his routine.'

There won't be a note put into a staff communications book about my rebellious act of eating my 10 o'clock pear at 8 o'clock. There won't be a discussion at a staff meeting about whether or not I should be allowed to have my pear at 8 o'clock or someone, thinking themselves radical, may suggest that maybe I should be allowed to change my routine so that I have an 8 o'clock pear and not a 10 o'clock pear.

The issue may make it to the supervisory level and the behaviour therapist might be consulted. They may want to look at my behaviour at 10 o'clock to see if I could handle the change in routine without breaking things. That I've never broken things in the past won't matter because everyone knows I'm just a bundle of behaviour waiting to break free into chaos.

A trainer for the agency, in two weeks, will use me and my 8 o'clock pear as an example of CHOICE and laud everyone for LETTING me have my 10 o'clock pear at 8 o'clock and everyone will be INSPIRED!

But in my world. I'll just ask Joe to pack me an extra pear, just in case I want two.

Sunday, February 05, 2017

Maybe ...

Then there's that moment when Joe and I are chatting with a fellow wheelchair user. We are approached by someone we all know simply as a 'nodding' acquaintance and he says hello to Joe, who is standing in the center of our little group, as if we two wheelchair users don't exist.

But maybe it isn't that we don't exist. Maybe he expected his greeting to flow through Joe the valued to us the 'not so much.' Maybe if Joe put one hand on either of our shoulders, the greet and warmth would flow through him, translating a 'normal' greeting into a something that us disabled folks could understand.

But maybe it isn't that he expected Joe's greeting to flow through to us. Maybe he actively decided that he wished to only greet the person with whom he felt he could connect with. Maybe he just simply thought he didn't have the skills or the, god forbid, didn't have the training on how to greet disabled people.

But maybe it isn't that he didn't feel he had the training. Maybe he has had training and learned that you aren't supposed to 'see' disability and he interpreted that literally. Maybe he thought he was doing us a favour by communicating to us that 'don't worry, I don't see you down there with your broken bodies and shame puddling around your feet.

But maybe it isn't that he was trying to do us a favour. Maybe he resents us being there. Maybe he looks at us and sees tax dollars. Maybe he figures he's given enough, after all, he contributes to charity through a work deduction program. Why should he give socially when we've been dealt with through $2.00 deducted every payday.

But maybe it isn't that he figured he'd paid his dues. Maybe he simply doesn't want to see us. Maybe he wants to live in a happy world where there is no disability and no suffering and no disease and no disaster. Maybe he'd be knocked out of his 'zone of comfort' if he acknowledge that we might have lives too.

But maybe, it isn't that he does't want to see it. Maybe he's just an asshole. 

Saturday, February 04, 2017

The Magic Flute and the Guy in Line

Joe and Ruby on state at the Canadian Opera Company's performance of the Magic Flute at the Four Seasons Centre. Joe is wearing a long sleeved light brown shirt and Ruby is wearing her little black dress with a simple string of pearls. Joe has his arm around Ruby.


A couple of months ago I was notified that, because I had flown so much, I had been bumped up to the next notch of the frequent flier program I'm on. Oddly, Joe who sat beside me on each of those flights did not. The two levels have different benefits and different offers so we decided to say nothing and have a broader range of choices.

One of the first things offered at my level was the opportunity to use your points to bid on two tickets to the Canadian Opera Company's performance of 'The Magic Flute.' I talked to Joe and we checked dates and then we called Ruby's mom to see if Ruby was free to take one of the tickets. Ruby has shown interest in the opera, at 5 she sat with Joe and watched 'The Magic Flute' on DVD, asking him questions as she watched about what was happening and why. It was all arranged for the two of them to go.

Part of the 'prize' was that they'd be in the VIP section and they'd get to go backstage and meet the 'Queen of the Night' and the Director of the COC and look around the sets. They got home way past bedtime but I heard all the stories in the morning. Joe loved it. Ruby loved it. It was a tremendous experience and an awesome way to use some points.

Why am I telling you all this on a disability blog?

Well, there is a reason.

Last Wednesday I had to go to some medical appointments (I'm fine, actually, no, I'm really well) and we stopped for tea and a bite to eat on the way home. Joe went to get tea and I went to line up where we were going to pick up a light lunch. I was behind a man and a woman who worked together. The man spoke much more than the woman did, she seemed to almost be a prop that he used as an excuse to speak loudly about his rich life with his rich kids. After talking about his son's lovely home in a GATED community, he went on to talk about summer travel. Where's he's going, where he's been and where he'd like to go. He took a break to ask her if she was travelling this summer.

Just as she was about to answer, he interrupted her. He looked at me. Waiting in line up, and broke into my reverie. I was just being an anonymous person in line, semi listening to him because I had no choice. I couldn't stop up my ears with bread, it's a waste of bread and the crumbs get everywhere. But disability gives permission for social intrusion and he spoke to me. "I'm so sorry it must be so awful for you to have to listen to us talk about all of our travels, when you ..." He didn't know quite how to finish the sentence delicately, so he just waved his hand at me in a gesture that encompassed by body and my chair.

I looked at him, sympathy on his face, and said, "Does prejudice and presumption come really easily for you? I've always been curious about that?" I said it smoothly like I've said it before. And I have. A lot. He backed up quickly as if I'd slapped him. There was time so I said, "And she's not talked about travel, you have, exclusively."

I was done and tried to go back to my reverie.

He was upset. He said, "I was just trying to include you in our conversation."

"It was a monologue but you weren't trying to include me you wanted me to know that you were aware of my exclusion from your wonderful life in your wonderful privileged world." I was tempted to tell him how much I travelled what level of award I was on with my frequent flier program and that I had points coming out my wazoo some of which I was using for tickets to the opera.

But I didn't.

I didn't want to move from pitiable to inspirational and, I just wanted him to shut up.

He did.

Thursday, February 02, 2017

Gold Star Lives

I was congratulated and acknowledged and outright praised yesterday. Guess what for? Holding open a door so that Joe could get in with the grocery trolley. It's a simple thing to do, I pull the door open, move to the side while holding it open, then when Joe passes through, I back through the door holding the door until it's safe to let go. I've done it a thousand times.

And I got congratulated and acknowledged and I was given outright praise.

Here's the thing.

It was genuine.

The speaker mean what was said.

The voice was tinged with awe.

I know this is a really common experience for wheelchair users or, indeed, anyone with a mobility devise, or actually anyone with any kind of visible disability or difference.

"Wow, look at you being all normal and everything!"

"WOW!"

Typically this just annoys me, and I make a comment, usually trying to be funny about how majestic my abilities are. Go me.

But this time, I found that I'd moved passed simple annoyance to a deeper kind of thought about why I was annoyed. Why would that bother me? Praise is praise, right, it's positive, right? But, what if the compliment comes from a belief that little accomplishments of daily living are all we are capable of and therefore we are performing at the peak of our abilities when we do something like, say, get on an elevator competently.

No wonder they are so frightened of disability.

If their understanding of disability is not only a reduction in status but a reduction in expectation, how frightening would that be?

They are congratulating me for doing actually more than they thought I'd be able to do because I held a door open.

What do they think disability is?

Who do they think we are?

How must we live our lives?

"Holy shit, that guy with Down Syndrome is using a cell phone, AWESOME!"

Where did I get that quote from? Did I make it up? No, I don't have that kind of imagination, I heard it said while out the other day. It annoyed me, but I didn't think about why.

But now I have.

We live lives in which they can 'gold star' us just for shopping or going to the movies or, yes, using a cell phone or holding a door open.

Yikes.

Sometimes I think the only people who get those of us in the disability community are others in the disability community (I'm speaking broadly about this community, families, friends, husbands, wives, parents ... all of us).

Why are we keeping 'us' secret?

Wednesday, February 01, 2017

Little Thing

Yesterday I set out to break my distance pushing record of 1.3 kilometres. I hoped to double that record but wasn't sure that I'd be able to. This comprises two laps of a very large mall. I set out pushing myself a little harder than I should have as I burned up a lot of energy quickly. I made good time and good distance before I had to first stop and take a brief rest.

When I crossed the start line of the first lap and entered my second lap I was already giving myself permission to stop. My rationale was that I had come to beat my record and that had been achieved. That dialogue carried me quite a long distance and then suddenly, finishing was actually possible. I was pushing quickly, with renewed energy towards my goal. I was sweating, I was clearly working hard.

I passed several other people, going the other way, that were also lapping the mall. All were on foot and all were equally purposeful with their strides. There were those that passed me several times going my way too, so I wasn't alone in using the mall as a place to get in a bit of a 'run'.

Seeing the finish line was a real emotional thrill and I was determined to get there so that I'd be in under an hour. Then a fellow coming the other way, who I had encountered a few times as he made his way around much more quickly than me, caught my eye. I looked up and he gave me a quick thumbs up, a kind of, 'good going' moment of encouragement.

I can't tell you what that meant to me. It was a moment of inclusion, not as a disabled person, but as a fellow 'lapper,' a fellow 'runner' and it really mattered to me.

It was such a little thing.

Funny how those matter so much.