Disability At The Movies: Mockingjay

Those who know me also know that I've really fallen for the Hunger Games movies. Really. Seriously. I think it has themes in it that are powerfully relevant today, and I find the character of Katniss, as played by Jennifer Lawrence, to be so human. Anyways, enough of that. I wanted to write about seeing the movie yesterday and a short, less than a minute, scene. It's about disability and I found it, as a disabled viewer, powerfully affirming. I don't know if it was meant to be, I don't know if the writers were thinking about the message they were sending. I don't care. They got it right.

I don't think this is a spoiler, I won't mention the name of the character involved, but if you are worried, go no further.

One of the people in this movie has become a wheelchair user because of what happened in the last movie. The characters in the movie make no mention of it, he's at the table and fully involved, the wheelchair has not sidelined him or made him unnecessary. When Katniss first sees him, there is a short pause as she notices the change, the fact that he's using the wheelchair. Once noted, she just continues on. No comment was ever made about him being 'confined' to a chair, no pity flowed his way. He was respected by her and by the other characters in the same way as in the past. Not a drop of condescension.

It was great to see him wheeling about, just being the person he is - sitting down. It was great to see that his purpose was still honoured and his membership in the group not questioned.

What's best is that none of this is spoken about, it just is. It's like the assumption is 'of course he has value and his value does not disappear with disability' and that's that.

I liked it.

I liked Katniss, notice the disability, register the fact, and move on.

For those who want to know - that's how it should be done.

So ... I Lost It.

I have had a long and busy and very productive week. I've worked days where I went to work in the dark and came home in the dark. Yesterday I was sitting at my desk at 6:45 AM and driving out after night has fallen. When we got home, I simply wanted to go out for a few minutes just to feel the fresh air on my skin and to relax and have a cup of tea in the local mall. We were worried about getting space, it being Black Friday (why we imported that American tradition, I don't know) and all.

But there was space. I was exhausted from the day so I asked Joe if he'd go and get me my green tea and he agreed. I saw that the line up was long and started to just people watch and otherwise entertain myself. The table I was at had this sign saying that it belonged to the coffee shop and was reserved for customers of the coffee shop. We figured even though we weren't buying coffee, we're still customers.

I didn't see him coming. I was almost dozing - as I said, I was tired. I notice him when he's standing over me. He says, "This is for customers." I say, I am a customer. He looks, and makes it obvious that he's looking, "I don't see any coffee." I said, getting a little pissed now both at the intrusion and at the type of intrusion, can't I just go our for a fucking tea, "it's coming."

He changes tack, "You were almost asleep here,' it's an accusation. "I'm tired," I said, not yet realizing that that's exactly why this has gone on so long, if I'd been more alert this would have gone differently. And probably with a lot more grace. He said, "Why would you be tired? Now me, I work and pay taxes so people like you can spend my tax dollars in places like this."

It was out of my mouth faster than I could stop it. I don't usually swear in situations like this, but I just said, "Oh fuck off, you're nothing but a bigot. You think you fucking know what my day was and where my money comes from? Really, are you a fucking psychic? I don't have to justify myself to small minded pricks like you. I'm buying tea with money I made and my taxes are probably putting your fucking brats through school. Now piss off."

Joe arrives with two teas in his hands. This man is frozen to the spot. I now notice he's wearing an expensive business suit, he looks like an executive that  is spoken too in only deferential terms. Joe looks from him to me. I said to Joe, "Ignore him, he's just a bigot with a mind barely big enough to fit the word 'prejudice' in it."

He turned on a very expensive heel and headed out the door. He didn't stop for coffee as I think he had planned.

Ah, poor dear.

I need to admit something. Though I never advocate this way. I think that swearing at someone is NOT an effective way to engage someone or to encourage change. But, if I told the truth. A little part of me, well maybe more than a little, enjoyed that.

OK, I Need Help and Advice

Out of the blue, yesterday without any warning, someone popped into my life and thanked me for something that I did and for the effect that my action had had on their life. Out of the blue! Someone appeared and then disappeared again. It was, for me, nice. Discombobulating, because of all the emotions and memories suddenly brought to the fore, but nice.

And now I'm on the horns of a dilemma. Maybe you all can help. Many years ago, when I was in school, a popular kid did something really nice to me. It was only that one time, it wasn't the start of any friendship or anything, it was just a simple act of kindness that mattered, deeply, to me. The probability is that this person doesn't even remember the moment.

It was big to me.

It wasn't big to anyone else.

But now, for the first time, I have the capacity to contact this person to say thank you. But I'm afraid that the intent behind the contact would mean more than what it means. I don't want to reach out to establish any kind of 45 year later relationship, I just want to say thanks.

Is that weird?

Should I just let it go?

Help!

Bullying Confronted

From the start I've been a fan of the Hunger Games movies. I actually think that they have something to say, and the fact that China is wary of it because of it's themes and messages means that others agree. So, before seeing the third one, I wanted to buy the first two and watch them again, to have the story fresh in my mind. We went to a mall that had three different places to buy DVD's. The first, a chain, had really jacked up the prices, probably anticipating that others would do what I was doing. It would have cost nearly 80 dollars to buy both of them. Um. No.

At our next stop we picked up the second one for $15 bucks and we were feeling quite victorious. Rah us. So we headed out to our third stop. This was the coolest place, it was an independent store and on entering we were greeted by a big boned woman whose hair was bright crayon blue. Her hair was as independent as she herself seemed to be. It went where it wanted to. She had piercings and tats and presented herself to the world as a bold, strong, powerful woman. I liked her right off because her greeting of me in no way patronized me, some people greet me like I'm a puppy entering their store, she didn't, she greeted me like a customer. That's rarer than you might think.

So, I asked if they had the first Hunger Games, she grinned and said that she thought they did. We followed her but had to stop because there were two women in the store with two children. One was about 7 and the other was in a stroller. They glanced around and saw me waiting for the clerk and began giggling together. I didn't hear what they said, but the clerk did. She turned to them and said, "That stops now, that kind of behaviour isn't welcome in this store!" The women were stunned, one started to protest, she was cut off. "I'm appalled that you would engage in teasing and bullying right in front of your child. What are you teaching?"

Big.

Bold.

Woman.

Indeed.

The shocker was that the two women didn't leave the store. They just quietly continued shopping. The clerk came back to me as if nothing happened. Chatted about the Hunger Games franchise, suggested a couple other series we might like and rang up our purchase. I got out my debit card to pay, wanting to say something, but knowing that it was unnecessary and probably best left unsaid. She knew I appreciated what she'd done.

 She reminded me that we all have voices. We all have the power to create safe places around us, places of welcome, places of inclusion. She knew she had that power, and she used it, without fear and without hesitation.

On seeing how easy that was I wondered why I'd never seen it before.

Can She Feel?

Horror, yes. Disgust, yes. Surprise, no. Like many of you, when I heard that in a Los Angeles court an expert testified that a 9 year old girl with an intellectual disability would not experience trauma because, essentially, the less intelligent you are, the less trauma you will experience. Further he stated that, even though this girl was repeatedly assaulted her disability was a 'protective factor' regarding trauma.

While many people have written, powerfully, about the implications of his testimony and the outrageous contention that people with disabilities don't experience real trauma and emotional pain. I am astounded that this guy even got to testify at all. The acceptance of the question, "Do people with intellectual disabilities experience pain and trauma?" or more bluntly, "Would a 9 year old girl, with an intellectual disability, who is repeatedly sexually assaulted, against her will and without her consent, by a non-disabled peer be able to experience trauma?" is the real outrage.

Does the existence of this man's testimony, no matter the content of the testimony, mean that there is a QUESTION about people with disabilities ability to feel emotional pain, to suffer from trauma, to be hurt by rape or abuse?

Does the sheer fact that and expert was called in to give an opinion, informed or not, about people with intellectual disabilities being fully human and capable of having a fully human response to pain and violation and purposeful hurt mean that there is enough doubt about this fact for there to be a NEED for an expert witness?

Beyond being horrified at what he said, I am horrified that he was there at all!

That someone thought that disability was a 'protective factor' against being hurt and traumatized.

That the presentation of people with disabilities as slightly less than fully human and completely unworthy of being considered victims happened in open court - disturbs me.

I do not have data.

I have experience.

I have seen people with intellectual disabilities weep with anguish when a parent, who'd promised to visit, doesn't show up.

I have seen people with intellectual disabilities heartbroken when they've experienced a break up with a boy friend or a girl friend.

I have seen people with disabilities suffering deep, deep trauma after having been victimized by a staff member.

It never struck me as odd, these things.

I never thought to say, "Hmmmm, I'm surprised at the upset because their disability should be a protective factor in them understanding and therefore reacting to what happened to them.

Like, never.

Ever.

That others do ... terrifies me.

Yet, outrage ... where is it?

The Path

A little girl is making art. It's a project that she is working on, along with a lot of other kids, in a school where I am going to be giving a lecture, in the auditorium, at the end of the school day. We arrived early, as Joe and I are in the habit of doing, and Joe stayed in the auditorium to set up while I went on a tour with the Vice Principle.

We come upon this group of kids engaged in the making of art. I roll into the room in order to watch. I'm told, proudly, by the Vice Principle that it's an opportunity for me to see 'inclusion in action.' And, it's true. There are kids with both physical and intellectual disabilities working right along side peers without disabilities.

Near me is a little girl, maybe six, maybe seven, with Down Syndrome, working on the project. She is laser focused on her work, it's wonderful to watch kids who are totally absorbed in what they are doing. The teacher begins to let the kids know that they'll be wrapping up in a few minutes. The little girl with Down Syndrome has a Education Assistant beside her now. This Assistant has been in the room checking in with other kids who have disabilities and now has sat down beside the little girl who is working on her project.

The aide, in a helpful voice, says, "I think you should colour in these spaces," and points to a few spots on the paper. The little girl looked at her and then continued on. The Assistant was distracted for a few minutes by a short conversation with the teacher. When she turned back and looked at the girl's work, she said, conversationally, "You didn't colour these spaces like I suggested."

The little girl continued her work but obviously wasn't going to take the Assistant's advice. When prompted again, the child turned to the Assistant and said, "It's my art."

The Assistant was brought up short but responded wonderfully, "You're right, it is your art, you need to do it exactly like you want to do it."

The child claimed her right to make art the way she wanted to make art. In doing this, the child signalled that she has the power to make her own decisions, to say 'no' to authority and to assert her will. She did all this calmly and strongly.

This little girl is on the path to becoming a strong woman.

Notice that though she has Down Syndrome, that descriptor isn't in the sentence above. You know why - because every little girl needs to be on same path.

Every.

One.

To The Red Headed Kid In Front of Me

Dear Kid In Front of Me in the Lineup,

Before I start, let me just assure you that I think you are an amazing kid. I know you aren't used to getting letters from strangers but this is the only way I can think of to express my admiration of the person you already are and the person you are still yet to be.

When I pulled into the lunchtime line up and saw that I was fifth or sixth in line behind a bunch of young teens, yes including you, I immediately tensed up. You see these are really unsafe situations for me. I'm fat, I'm in a wheelchair, I'm a pretty big target for really small hearts. But I noticed something right away. I saw that they were switching their gaze, and their open hostility to me, from you. Of course I saw your bright red hair. You already know that in a world browns and yellows, bright orange red hair, makes you really, really, really easy to see. Like me, I hope you don't mind the comparison and somehow I don't think you will, I'm guessing that there are times you just wish for a moment or two of anonymity.

So, they switched their gaze and their comments from you to me. Do you know kid, that I was in this situation once, when I was your age, and I didn't handle it like you did. For me, I was so weary, and this is neither excuse or reason - what I did was wrong, of being treated differently that when I had the opportunity, when another walked into firing range, I joined in. I became what I hated. It was only for maybe two or three minutes and I want you to know I am more wounded, in real ways, by what I did in those two minutes than I was from all the years of being the 'one'. The one that was easy to laugh at, to mock and to purposely hurt - I don't like the word bullying because it doesn't express what I experienced, I experienced violence, social violence. That means of course, that what I did in those couple of minutes was violent, purposeful violence. I won't minimize it by calling it bullying.

You, like me, saw them switch from you to me. I saw in your eyes, when you looked at me, a deep understanding. You stood there thinking, only for a second, and then you did one of the bravest, smartest, most compassionate things I think I've ever seen. You squared your shoulders and you pushed through the crowd of boys, the ones who had targeted you. They parted, just parted, in the face of your determination. You picked up a tray, the kind you put food on, and brought it back. You stood for a couple of seconds, knowing they were watching you, then you turned and you said to me, "Would you like this?"

An act of kindness, in the midst of meanness and, yes social violence, you did something kind. You exploded the atmosphere with what you did. I thanked you loudly, Ruby, standing beside me, thanked you too. In those seconds it was just you and us. The rest were irrelevant. They were made bystanders to a moment of connection. And connection trumps disconnection in the way love trumps hate, every single time.

After our thank yous you turned back into place. And those that had been shamed, not by what you did but by knowing they did not do what you did, stood silently, not even looking at each other, as they waited their turn.

So, red headed kid in the line in front of me, thanks.

I wish there was a bigger word than thanks, but for now that's all I got.

And I give it to you with the deepest respect for who you are and who you will one day be.

Dave

Now That It's OK To Do ... Murder, That Is ...

I just completed an interview, as part of research into the effect that working with people who have been traumatized has on you in the role of helper, and am a little traumatized from the experience itself. To be fair, the interview was only done after a warning that the subjects discussed might cause distress, and I gave fully informed consent.

As the questions rolled by about how I, in my role, deal with various aspects of trauma as experienced by those I serve, I began thinking about a young man I met in an abuse prevention class about a year ago. Even though it's a long time since, I remember him, everything about him, and everything about the encounter.

We were well into the class when he stated that there was all different kinds of abuse. He asserted that he'd never been hit, that he'd never be touched when he didn't want to be touched. But, he said, when his mom told him that she wished she had aborted him, or, now that it was OK to do, killed him when he was younger, that was abuse too. The whole class stopped. He began crying.

This moment was so at odds with who I saw when he came into the training. He looked like a typical twenty year old, wore cool clothes, seemed comfortable in his own skin and flirted outrageously with the girls, who responded with jokes and affection. He was liked. By his peers. He was liked. At a glance, the picture of a young and happy man.

Afterwards, when we talked together, I discovered that he was a young and happy man, who's soul had been battered and bruised. He knows he's not wanted. He knows that his family wishes him dead. He knows these things. "Sometimes, when I'm having fun with my friends, when we're laughing and all, it comes. I go kind of numb and it feels like I'm alone in the dark."

"Why is it OK for parents to kill their kids with disabilities now?" he asked.

"It isn't," I said, and he looked at me as if I just didn't understand the world I lived in. I insisted several times in several ways that "It isn't OK."

We made several agreements. I was allowed to tell his support team that he'd like to have some counselling around suicide and depression. I was allowed to write about this, cause he wanted people to know what it felt like to know, absolutely know, that in another time and another place he would not have been allowed to exist. That his mother would have killed him, that society would have approved.

As I answered the questions in the interview, all I could think about was him. And about how hard it was for me to get on a plane and leave. And about how hard it was to have stood so close to his pain that I could feel it echo in my heart. And about how, sometimes, it all just seems so difficult. I see, increasingly every day, the value of people with intellectual disabilities and yet I see, every day, reports of violence and murder targeted towards them.

And I know it's not OK.

Really, I know it's not OK.

But that doesn' help him.

And it doesn't help me either.

I finished the interview, I was honest about the fact that sometimes the pain of others is difficult to hear and difficult to forget and difficult to move on from. I think I surprised them by saying that having a disability made it harder. I was asked why. All I could think to say was ...

"Because, I know, they'd kill me too."

"Can you explain what you mean by that?"

"That's the problem, I can't."

Choir Practice

Last night Joe headed out, right after supper, to choir practise. When we lived in Quebec Joe was a member of the choir at St. Paul's United Church. It was a big part of his life and he enjoyed both the practises and the performances. When we moved to Toronto, with the travel that we do, and, I hate to admit, with the extra support that I need, he has been unable to join a choir as a regular member.

As it happens, Metropolitan Community Church of Toronto, which has an amazing choir, on occasion needs extra voices and asks for volunteers to come forward. Joe did this last summer and is doing it again this year for the first Advent Sunday service. So, off to choir practise he went.

We're comfortable enough to make jokes about this kind of thing, just before he left, I said to him, "Are you comfortable with leaving a cripple at home with all the sharps and matches laying around?" Joe, which will not surprise anyone who knows him, fell against the door laughing. And then headed out, I could hear him giggling down the hallway.

I was so pleased that Joe was doing this. I know he loves it. For me, too, it was nice to be home and secure, disability and all, alone. We've arranged the apartment such that it is as accessible as it is possible for a non-accessible apartment to be. We know my needs and routines and everything was taken care of before Joe left.

I got time alone.

Joe got time with others.

I was in bed when he came home, but my light was on and I was reading. Joe came in to chat with me, telling me about the choir and the songs and the fact that they were attempting four part harmony. I don't know what that means but it sounds hard. It didn't matter what he said, it mattered that his voice was still full of the enjoyment of being in the choir and participating in something he loves.

Disability changed my life.

But disability changed Joe's life too.

Last night, as I thought about it, I realized - yes disability changed our lives, but as we progress as we learn how to be in the world our our new(ish) normal. It's changed our life less and less.

NOTICE ME!!!

We were Christmas shopping, in a large, large store. The snowfall must have turned on everyone's need to get out and shop for gifts because the store, and the mall it was attached to was packed. Just packed. We'd not been to this mall or this store for a very long time and Joe and I found ourselves wandering around quite lost. We were looking for the entertainment department but seemingly could only find women's lingerie and men's boots. Finally, with help from two different store employees, we were going in the right direction.

I was about to turn a right angle that would allow me to go from one aisle to another. Predictably it was chaos. I saw a young fellow headed towards me, walking forwards while looking backwards at something that caught his eye. I came to a stop, I was unable to back up out of his way so I called out to him. Hearing me he turned and made a quick turn to his left which avoided a crash. He smiled and said, jokingly 'Ooops.'

Then, out of nowhere, came his mother, she had seen the near crash from a distance and she grabbed his arm and yanked him further out of my way. She then shoved her face towards me and said loudly, "He's got low vision, a disability you know, LOW VISION."

I was immediately offended. Firstly, he didn't run into me because of 'low vision' or because of disability, he nearly ran into me because he was distracted for a moment. This wasn't a disability issue. In fact when I spoke to him he turned and SAW me and then adjusted his path. I had no idea he had low vision or a disability until his mother grabbed him and yanked him the way she did. I suspected difference because I don't see a lot of mom's of men in their late twenties grab them like they are four. The difference was confirmed when she yelled out to me that he had low vision.

I said, "He may have low vision, but his hearing's fine, do you really need to yell out his personal information?"

As I said this I saw something in his face, something light up, "Yeah, mom, you always do that, I don't like it."

She was shocked.

And, of course, with tiring predictability, angry.

She grabbed him and they were on their way, she talking quickly and angrily to him.

Why do people do that?

I think it's an odd form of Münchausen syndrome by proxy.

You know that syndrome where care providers get attention by creating or fabricating illnesses and disease in those who they are caring for in order to reap attention. I think this is a little like that. I say this because I see very, very, few parents who loudly proclaim their child's disability or diagnosis to the world in an almost random manner. But this has happened to me before, once or twice, and not always by a parent, sometimes by a paid care provider, and each time it seemed to me that the care provider was saying: HE IS SPECIAL AND THAT MAKES ME SPECIAL BECAUSE I AM CARING FOR HIM. I AM HEAVEN SENT TO CARE FOR A SPECIAL CHILD.

That poor guy handled the near crash with adeptness and humour. so much so that I would never have guessed that he too had a disability.

Yet the way he was treated.

The way he was spoken about - as if he had no right to privacy.

Disability shouldn't mean ill treatment or loss of boundaries - but it does, far too often, it does.  

A Robin in Winter

I am sometimes asked, with a bit of hostility mixed with pure disbelief, how I can write a blog every day regarding my experiences as a disabled man. This usually happens whens speaking to someone who also has a little bit of trouble believing my stories about the hostilities and prejudices I face from being different and disabled in the world. Accusations of being 'over sensitive' and 'hyper critical' regarding people who mean well and who have no ill intent in their interactions with me. Then, after informing me that disabled people suffer generosity spurred by compassion rather than prejudice spurred by hatred, I am dismissed.

Similarly, when lecturing, particularly about attitudes, actions and prejudices that people with intellectual disabilities face, I often face people who would really, deeply rather that what I was saying wasn't true. In order to facilitate that, I meet the same kind of accusation, I'm exaggerating to make a point. It's been suggested that my own disability has made me less able to be an accurate observer of such things. (Really!?)

In both situations, I am not speaking of MOST people, either readers here or those who attend my lectures. I am speaking of SOME people. Most get it because most see it themselves.

Well, then, sometimes when I lecture there is another person with a disability in the room. This is always wonderful. Like the other day in California, I saw a woman with a disability, using a wheelchair like mine, but hers was way cooler, roll in. She became my 'rock' for the presentation. I'd look back at her after describing something of the disability experience and she'd be giving me the thumbs up or nodding in that knowing manner. It's the kind of reassurance that you need now and then.

It's not just me.

I'm not what I'm accused of being ... and over sensitive, hyper critical poor observer of my own life.

I share these experiences with others.

At break she came to speak with me, Robin, she has given me permission to use her name, and I had a great chat as we shared experiences and just communed disabled person to disabled person. We had a conversation that could ONLY be had between two people with disabilities. She gave me the gift of confirmation and of true understanding.

It's not just me.

We people with disabilities have something to say about our lives.

I'm privileged to have an audience, mostly of willing listeners and willing readers - but for those who think I go to far and overstate the case, knock on the door of another person with a disability and have a chat. I'm not alone in this. Robin reminded me of that.

The Centre Seat

On our flight home from San Francisco, we were pre-boarded, as per usual and were warmly greeted by the flight crew. Our seat, as we had chosen, was right at the very back of the plane. We got there, put our stuff away, and got into our seats. Then the plane began to fill with other passengers.

A fellow came to the row ahead of us, and began putting things away in the overhead bin. I noticed, in the way that people do, that he was of a different culture, and colour, and faith than I was. I say this, because it's true, and because noticing doesn't mean anything. I saw that he noticed that I was fat, I wasn't offended by his noticing, because, well, people notice.

Aside from everything else I want to say here that I don't like or appreciate when people claim NOT to notice difference. "I don't see your disability," said someone to me a few weeks ago. It was meant as a compliment because, of course, disability is something best not seen. Well, I am disabled, I am fat, I'm good with that, I'm good with people noticing too. Staring, mocking, and other forms of social violence, I'm not good with ... but notice is just notice.

Back to what I wanted to write about.

As it turned out the fellow sitting in front of me had two empty seats beside him. Somewhere about a half an hour into the flight he moved over to the centre seat. I was on the aisle, Joe was by the window, the centre seat was free. He then turned back to me and asked if him putting his seat back would be in my way at all. I told him that it wouldn't be. He then reclined his seat and napped for much of the flight. (I wish I could do that.)

When we landed, as we were at the back of the plane and as we had to wait for my wheelchair to come up from the hold of the plane, Joe and I just waited. Acting to fulfil a resolution I've made to say thanks when thanks is due - something that should be automatic but, for me, isn't - I leaned forward and touched his shoulder to get his attention. He turned to me with some alarm in his face.

I said, 'Excuse me,' and I saw the alarm increase as he realized I was going to speak with him. A total stranger was going to say something and it caused him tension. I noticed this, in the way that people do, but continued.

'You are a kind man,' I said, 'I appreciated you moving over and using the centre seat to recline, it was really considerate and it made my flight better.'

Relief flooded his face, he said, quietly, 'My faith leads me to kindness.' He looked at me, like I might disagree.

'And mine leads me to gratitude, we're a good pair,' I said and he laughed.

As he gathered his stuff and readied to leave the plane, he turned and said, 'Thank you. Just, thank you.'

I am very aware of what it is to live different in a world hostile to difference. I am very away of the constant threat of conversations becoming confrontations. I am very aware.

For me.

I can forget that there are other differences. Other dangers for other people. Perhaps if more were moved to kindness and more were moved to gratitude our world can change. I'm not exactly sure how, but I know that I have been changed because of that brief conversation on the plane. I think my heart may be a little wiser because it knows it has to also be a little bigger.

Elevating Bizarre

Sometimes it's just bizarre.

Really. Really. Bizarre.

There are five people in this little story. Four of us want to use the elevator, there's only one, the others are down. The fifth person in my tale is the security guard. The guard is wearing one of those uniforms that when you first glance at him makes him look like a police officer.

It starts when the elevator arrives and the door opens. After the passengers depart the security office bounds over and puts his arm out to ensure the door does not close. He then indicates that I am to get on. I need to get on last. I tell him this. There is enough room for everyone, but I have to get on last. If I get on first no one will be able to get by me into the elevator.

He doesn't hear me, or won't hear me, he keeps indicating, with a big smile to show he's being nice, for me to get on. I look to the others waiting and ask them to please get on, I tell them I'll get on last, that way everyone will fit. They all, seemingly intimidated by the security guards insistence that I get on, tell me to go ahead and get on.

He's standing there grinning and waving for me to get on.

Everyone else is standing there waiting to get on.

There is only one elevator, it's being held up, others are waiting on other floors. We just need to get the fuck on to the elevator.

I've had it.

I KNOW HOW TO BE IN A WHEELCHAIR, I KNOW HOW TO GET ON TO AN ELEVATOR. NOW PLEASE GET ON SO I CAN GET ON AND WE CAN GET ON OUR WAY.

Everyone looks at me as if I've suddenly arrived from Mars, as if I'm incredibly rude. I don't feel rude, I feel assertive.

I look at one person, just one person, a pleasant faced woman who is one of the four. I say directly to her, quietly, 'please get on.' She nods. She moves forward past the protesting security guard who still wants me to get on first. The others follow her. They move to the right leaving the space I need to get on to the elevator. We all fit perfectly.

The guard, still standing there scowls at me when I get on.

I don't care.

I know how to be in a wheelchair.

I'm the expert.

Listen to me.

Home and Ramped Up

First, let me apologise for disappearing for a few days. Our trip to California was packed, we stayed in a hotel in Emeryville and then drove to the three cities we worked in. It was great not have to pack and move every day but we had to leave early, because of traffic, and we got home to the hotel lateish also because of the traffic. By the time we were home, after driving and lecturing (while still coughing) and then finishing up all emails and questions from work, I was toast. There just wasn't much energy or room for much more.

But, I'm happy.

I'm happy because it all went well. I met wonderful people. Audiences were both receptive and appreciative. It felt, really felt, like the whole thing mattered. There's no better feeling than that of having made, even a slight, difference. And I had that feeling three days running.

So.

I'm happy.

The biggest challenge for me in air travel, now, is the ramp, in Toronto, at the end of the trip. Toronto airport is constructed such that there is a huge long ramp down to the planes. I know most airports have the same, but Toronto's is, in my experience, the longest and hardest ramp. At one time, if I took my time, I could walk the ramp up. I can't any more. My balance, my strength, just isn't enough.

As we checked in yesterday, I asked the woman who was helping us if she could get a message, somehow to Toronto, letting them know that I needed the 'pushing machine' with a wide chair.  She said that she would do what she could. I sat and watched her type in the request and she said, 'Well, let's see what happens.'

I didn't think about it much on the plane because I knew, whatever happened. I'd get up the ramp one way or another. If it took me a long time, it took me a long time. When we landed we waited to get up until we saw the wheelchair being taken out of the hold and pushed towards the front of the plane. I got up and got to the front of the plane to see both my wheelchair and the 'pushing machine' (it must have a name) with a wide chair.

I'd never ridden in one of these before but I got it, got settled and with a push of a button we began a slow but steady ride up from the plane to the top of the last of the three ramps, two short, one long. It was awesome. Just awesome.

From where we were left off, it was an easy push to security and then to baggage and out. My arms and shoulders are at full strength because I've been in my manual a lot recently and have been able to push, really push, myself longer distances. Even over rugs!

Part of me, for a few minutes, though, felt badly in asking for this new service. I've known about the pushing machines for a long time, but I've never used them. Oddly, I felt proud of that. So, if I was proud of that, how was I supposed to feel about using them now? I'd just finished a three city lecture tour, I'd rolled myself miles in my manual chair, and I was feeling guilty - like I was lazy or something. But then, I realized that I need what I need and that's the end of it.

I'm glad I off-loaded the guilt before I got on the chair and rode up the ramp. Because if it's the new normal for me when I travel by plane, I'm gonna enjoy it.

And I did.

And He's Off

Travelling again, by plane, means that I'm in my manual chair for most of each day. Until these last two trips, first Edmonton now California, I travelled primarily with my power chair. I found that, while the power chair made everything easier, I had lost a lot of power in my arms and shoulders. I, suddenly, found myself needing help for even short distances.

Yikes.

Now, however, I'm getting that strength back and can push myself for long stretches without need of assistance. It's nice to have that back. It's great to feel my arms and shoulders work, it's great to have a natural tired after a long while out. It's nice.

That explains, I hope, why I didn't really notice the first time that someone, in this case a security guard, say, "Great to see you pushing yourself."

OK, I admit, I smiled and nodded. It was great to be pushing myself.

But, then, after hearing that several times. It started to become a bit, I don't know, intrusive. Why were these people talking to me? Why were they making comments on my activity? Why was I being pulled into interactions with strangers about simply moving through my world?

I know, I know, some will say that I don't give people a break, that they were just being nice.

And I think they were.

Their sentiment was nice.

But I don't notice people making comments about other people moving through their world, other people just going about their business.

There is something about disability that just gives people permission to comment on our lives,our activities, and our bodies. I say this because of the many comments I've had all of those things said ...

'Gotta have great arms to get all that weight around, good on you!'

'Nice to see you out, and all by yourself too.'

'Can't you afford one of those electric chairs? At least you can get yourself around.'

I can honestly say that I go nowhere without commentary.

Nowhere.

Mall.

Sidewalk.

Store.

Anonymity is simply not possible. I heard a woman once say that for her it was like space belonged to men and women passed through it. I understood that to the depths of my being. I have lost the idea that any space, any space, belongs to me. Space is given to me grudgingly. And I pass though space owned by others.

As I don't want to be seen as rude or bitter, I either smile or nod in response. I find that when I'm pushing hard, I can't engage in conversation.

Which, I think, ultimately, is lucky for everyone.

The Poppy on My Hat

(photo description: Dave wearing a gray hat with a red remembrance poppy pinned to the brim.)

I have a poppy pinned to the hat that I wear.

I've never put it there before but I decided that, as they fell off every coat and as my hat is made of a very thick and stiff fabric which would hold it secure, the poppy would be displayed with some prominence.

Yesterday, in the airport pushing myself between check in and security, a couple of kids passing me by looked at me and said, "Like your gay hat." When they saw I was turning to confront them, they skittered off, cowardice being the hallmark of bullies and bigots.

When I got on the plane I thought about my poppy, my hat and the accusation that my hat looked 'gay'. I don't think they just meant 'gay' as in bad. Because the poppy is on my hat, a man's hat where flowers don't typically reside, I think they meant 'gay' as in actually 'gay'.

I, of course, because I do this, thought, 'oh, my, maybe it was a bad choice to put the poppy on my hat.' I think blaming the victim is a horrible thing to do, unless the victim is me - because I, of course, deserve what I get. But, that lasts only for a few minutes now. I moved on, as I thought about it.

I'm glad my poppy is on my hat.

I'm glad that some people will think it's 'gay'.

Because gay people fought and died, gay people still fight and still die, in defence of their country, in defence of the freedom. Gay people fought in the First and Second World Wars. Gay people fought for countries that would jail them for who they were. Gay people fought for the ideal of freedom when freedom was denied to them in their home countries. Gay people fight, still, for countries where anti-gay bigots rant about our existence, our relationships, our lives. Gay people still fight even though, at home, their friends are beaten, sometimes to death in the back allies of dark prejudice.

I have seen posters saying that say of gay people: we are your sons and your daughters, we are your sisters and your brothers, we are your family.

Well, we are also your soldiers.

We fight for a freedom that many do not willingly grant us.

Many years ago, when I was younger, when I was not a wheelchair user, Joe and I were sitting in a gay bar in Denver. It was crowded and we ended up sitting next to an old guy who was slowly and quietly getting quite drunk. He drew us into a conversation we did not want to have. But, as often happens, we had been wrong to avoid his eye, avoid his wish to chat. After asking if we were a couple and after hearing that we were, he told us an unembroidered story about being in the war, about falling in love with another man, who like him was deeply in the closet, 'as we all were back then'. He watched the man he loved fall. He also told of his immediate grief. He held him and he wept. In the days after the other men figured out that his grief was more than that of one soldier for another. His life became hell. He was discovered. He was reported and then suffered brutal punishment and eventual expulsion. He was marked, then shamed, for the rest of his life.

We sat quiet at the table, in a noisy bar full of laughter, there was a corner of quiet. He said, 'I don't know why I told you my story. I never tell that story. I guess tonight, seeing you together, I missed him a lot.' I asked him the name of the man that fell, the man he loved. 'You want to know,' he asked surprised at our interest. I told him that we did. 'His name was Robert, but I called him Bobbie.' he said.

Today, when I go out, for the rest of the week, when I go out, my poppy will be proudly on my cap. My gay hat with the blood red poppy on it. I wear it for the man who loved Bobbie.

And I wear it for Robert.

A man I didn't know.

But he was one of mine.

Bigotry, Out Loud

I saw her about the same time she saw me. I was looking towards the ramp, as I headed towards it, from the top. She was looking towards the ramp, as she headed towards it, from the bottom. Now mostly when someone walking sees me heading towards the ramp, they scoot over a bit and take the three stairs beside it.

She did not.

It became clear to me that she was going to get there first so I slowed up and pulled over to be out of the way of the top. At the time I really thought nothing about this. I do this kind of thing several times a week. It's no big deal. What made this different is that when  I looked to see her progress, I found her staring at me hard. Really hard. Like she wanted me to feel the stare.

It was a hostile and hateful look.

Again most people when they see someone with a disability waiting to use the ramp, trot up the ramp quickly.

She did not.

She walked slowly, deliberately. I could here her boots, expensive, as her heels, high, as they landed each step. And with each step her eyes tried to burn hatred further into my soul. I had no idea what was going on. I had no idea why she was walking so aggressively slowly. I had no idea why she felt the need to target me with that cold, hard, angry stare.

I was sitting at the top of the ramp, comfortably out of her way. I just smiled pleasantly at her. I decided not to take the bait. I had not been in a rush, I had no where I desperately needed to be. I could easily wait for her to walk up the ramp. My only concession to her aggressive challenge over the ramp, was to return her stare. I wanted her to know that I saw her just as much as she wanted me to know that she saw me. But I kept my face kindly. I know when my face is kindly, since I don't naturally have a kind face, I have to make it look that way, and that's what I had done.

Finally, she crested the top of the stairs. She was standing now right beside me. And forgive me for sounding over-dramatic here but I could feel her hatred of me waft off her. She stood, for a second more at the top of the stair, blocking my entrance and then left, walking quickly away.

I went down the ramp.

Nothing was said.

Everything was said.

I think I prefer bigotry, out loud.

Saintly Writing

I am still moving more slowly than usual. But, finally, I can say that I'm also moving more strongly. I was really hammered by this bout - the cough for a while even ruled my life and determined the course of my days. It's still there but is being beaten to submission by rest and by tea, and perhaps the antibiotics the doctor prescribed for me.

Yesterday afternoon we went out to see the movie "St. Vincent" starring Melissa McCarthy and Bill Murray. I wanted to go to a movie that simply told a story and from the trailers, this looked to be the one that fit the bill. That and it was playing across the street from me.

I worried, as I wheeled myself into place, as I do always when I see comedies, if there would be an abundance of disability negative language. The 'R word' is still apparently very funny to writers and to audiences.

As it happened, I was right to worry. About midway through the film (no spoilers on plot but the uses of the word and reactions to the word will follow) a character uses the word, twice. Maggie, the woman played by McCarthy, looks uncomfortable at its usage but says nothing. I imagine this is a fairly accurate portrayal of what happens in real life. I was annoyed, really annoyed, but as I had prepared myself for it and, of course, realizing that my little burst of internal anger would have no effect on the world, I let it go.

However, later on in the movie, the word is used again, by the same character. This time, two children tell her to stop. One saying that people shouldn't use the 'r word' the other saying it's 'politically incorrect.' When the character asks why Maggie says something like, 'it's like midget,' and indicates that this is a word no longer says. Again the character asks why and though she doesn't get an answer, because the scene moves on, the audience gets a message.

THERE ARE WORDS YOU DON'T USE IN RELATION TO DISABILITY AND DIFFERENCE.

I wasn't prepared for the second scene. I wasn't prepared to hear a protest about the use of disability negative language and to hear it so clearly stated.

That the writers had the protest against the use of the 'r word' come from children is heartening. I think that's how change will come.

We enjoyed ourselves very much, it was a welcome distraction from being sick all week. We headed straight home, I was tired, but I was also hopeful.

Just maybe.

Maybe.

We're getting the message through.

Bricks into Breeze

Yesterday, after several days of being in the house, I headed out to go see the doctor. I was getting minimally better but after 3 days of being really sick, I wondered if the doctor might be able to help. Joe had called in to see if we could get an appointment and, magically, there had been a cancellation and we were slotted in for just after three.

It took me awhile to get dressed and ready to go out. Stopping to cough furiously every few minutes or so really does slow the process. Once dressed and ready, I hopped into my power chair and we were on our way.

It's unusually for me to be indoors for so long. I'm not one that can hunker down and stay in for days on end. I like the occasional 'all housecoat, all day' event, but just one of those is enough. I'd found the 3 days of illness to be long, boring and exhausting.

As much as it took energy to get out, I was full of anticipation as we headed down the hallway to the elevator. We rode down in silence, both of us wrapped in our own thoughts. We exited the elevator to the 'hellos' from others in the building we have a nodding acquaintance with. Then, blessedly, we were out.

Out.

I could feel the fresh, cold air, touch at my face. The cold, brisk air was perfect for being out in, for walking in, for just being alive in.

On our way down to the doctor's office, I thought to myself:

THREE DAYS???

THREE DAYS!!!

In three days my skin had become desperate for the touch of 'outside'. In three days my nose had longed to smell the freshness of newly fallen leaves and the coming of snow. In three days my whole body had longed for the sense of freedom that is presaged by fresh air.

I would have described the three days using these words:

interminable

endless

unrelenting

Three days.

And yet we locked up people with disabilities for YEARS, dozens and dozens, decades and decades, of years. They were inside because we didn't want them outside. They were locked up for the crime of difference, they had been convicted for straying too far from the norm.

I can still picture the large institution that I worked at, years ago, here in Ontario. I remember, well, the smell of 'inside'.

Now, when I need to remember that place, I will remember that the community living movement fought to turn bricks into breeze - perhaps the most honourable fight ever fought in the history of those with disabilities.

Gratitude

I'm having a really hard time shaking this damn bug I picked up. I haven't been out of the house in days and I've discovered that even I can get tired of tea and blankets. Joe, who seems quite immune to whatever I've got, has been extra busy with taking care of me. I'm extremely fortunate to be with someone who cares unreservedly and cares generously. He never makes me feel like I'm a bother or a disruption to his day.

So, on today's really brief blog, I just want to pay tribute to all those women and men who provide care and support to partners with disabilities or illnesses. We may not always know how to say it, or we may say it at inopportune times, but we love that you love us so much that you are here for us when we really need you.

Love is a word easily said. But doing love, rather than saying love, is a powerful thing.

I know I will get better, and I know that there will be an opportunity in the future, as there has been in the past for me to 'show love' ... I know that.

But right now, I merely want to be grateful, for Joe and for all the partners who help all the partners who need it.

Now, back to bed.

3000/8

I've had a few days to prepare for toady's post. I wanted to write something very special. But, as always, life got in the way. On Sunday, after feeling well all day, I had symptoms kind of like my allergies were acting up. But, and hour later, WHAM, I was sick. I still am very ill, cough, cold, sore throat, runny eyes - all of it. So, I'm really out of commission. And, of course, it's hard to be inspired when you are sick, sitting on your chair, in your housecoat, covered in blankets, sipping tea.

So.

No inspiration.

But here I am at a blog milestone. This post, this very post you are reading, is my 3000th post. Three. Thousand. Posts. On October 8th of this year, the blog celebrated, quietly and without fanfare, it's 8th anniversary. I let that pass because I saw I was drawing close to the 3000 post mark.

In these 8 years and 3000 posts Rolling Around in My Head has gone through many ups and downs, the biggest change being the name of the blog which was, originally, Chewing the Fat. The ups and downs have been both readership and number of comments. Right now I'm at the lowest average readership level that I've ever been at and the comments, while still wonderful, are at the lowest ebb. Several blogs this year have gone without comment, which is a first in 8 years.

Even with these new lows in readership and comments, I still feel that the blog serves a function. I need to in order to continue to write, almost daily, after all these years. Whenever I'm at a conference or a presentation I always meet a blog reader and we always, that's every time, have a nice conversation about the blog and about what it has meant to me and what it has meant to that reader.

So.

I know it matters.

The changes haven't just been in readership and comments, they have been in me as well. I used to feel absolutely compelled to write daily, even if I didn't have much to say, or anything much new to talk about. Now, I have given myself a day off or two when that happens, I decided I didn't want this blog or our relationship as writer and reader to become burdensome. And, it isn't. I still learn and am challenged by the comments, both positive and negative. I have changed how I've thought about things because of what's said in the comments. Further, I speak about things differently because I've been called on how I've written something. So, I'm still growing because of this.

To those who are still around, thank you.

To those who comment, thank you very much.

I'm still enjoying, all these years later, all these posts later (3000!) the community of people who come here regularly, or just when they can. I am still writing this because you are still reading this ...

Wow.

8 years.

3000 posts.

Not what I thought would happen when I first sat down and created this blog.

But I'm glad I did.

I hope you still are too,.

Pita Please

We both had a craving for pita pizzas so on our way home from we stopped by our local grocery store. We've been shopping there for several years now and, as I am fairly noticeable, I am on nodding terms with almost all the staff in the store. As Joe is typically with me, if I need any help, I get it from him, not having to involve any of the staff.

However, Joe had to go to the washroom on arrival at the store so I took the shopping bag and headed in. I went, first, for the pitas. They were on the lowest shelf, well out of my reach. I looked to a clerk, one I recognized, who was stacking banana bread on a shelf. I asked her, politely, if I could have some help. She said, with annoyance, "I'm busy."

I told her that I saw that she was busy but that didn't take away the fact that I needed help. "What do you want?" she asked glaring at me. I told her that I wanted the whole wheat pitas and that they were out of my reach. She slammed down a banana bread on the shelf and stomped over to where I was. She saw the package, asked me how many I wanted, I said that I wanted one, she got it for me and then went back to what she was doing.

Now, I have to say, before you do, that I don't think this is a disability issue. I didn't relate her reaction to the fact that I was in a wheelchair. I think she would have done the same to anyone asking for anything.

And I don't understand this.

I get that she may not like her job.

I get that she may be having a tough day.

I get that.

But.

She's at work.

That's all I need to say. Her time is not her own, she is being paid to be there, to provide customer service, to create an atmosphere where people want to shop in the store where she makes a living. I would think a break from the mundane to interact with someone who needed help would be one of the best parts of her day. Human contact.

But whatever.

Even if she doesn't feel that way.

She's at work.

Though it wasn't about disability for her. She made it about disability for me. I hated having to ask for help. I hated having to press someone to do something they didn't want in order that I could get what I needed. I wished with all my might that I could have got it myself so I wouldn't have been a bother to her.

I went, in my mind, from being a customer to being a bother.

I had been polite.

She had been rude.

Yet I'm probably the only one thinking about this interaction.

That's not fair.

But then, what is?

Blog News: Today's Post Follows

Hi all!

 I have recently become aware of a fellow's attempt to list the top 60 disability blogs. He uses some complicated system that the BBC uses. I tried to figure it out but couldn't. Anyways, I'm giving you the link because I thought it might be interesting for those of you wanting to find other blogs, other topics and other voices ... I have begun going through some of the ranked blogs and am impressed by the diversity of our community. This week I'm ranked 20th but typically, I'm 57 or 58. In reality I'm just glad to be on the list of 60. The list, by the way, is updated weekly.

Here's the link: http://joereddington.com/ranking.html 

Enjoy!

(Today's post follows.)

Little Community, Big Changes

Six people, four adults and two children, dressed in vibrant colours, holding signs proclaiming to be Lucky in some way. I am sitting in the middle of the photograph.

I was sitting, alone, checking emails on my cell phone. I had parked just out of the way of others there, most of whom were rushing to the concession stand or to the movie that they had chosen to see. I noticed the glances, of course, they are an unceasing part of being different and being disabled. I knew that they saw me as they expected to see me. Someone alone. Someone apart. Someone solitary. Someone, then, without community. Someone who existed outside the mainstream. Someone made differently therefore who lived a different kind of lived. Someone shunned.

Naturally alone.

I get the sad and pitying smiles from strangers. It's an indicator that they have seen me and they are, as their gift to me, acknowledging me. I always act as if I hadn't seen them. Because I know that though they have seen me, they haven't seen me, it seems only fair to return the favour.

Then, the door opened. Joe and Mike and the kids came through. Suddenly I had two little girls running towards me telling stories of Hallowe'en and laughing and hugging and talking about the movie we were all going to. We are all together buying tickets, all a jumble of excitement and of friendship and of caring and of, yes, community.

Some of those who had seen me m
oments before. Who saw what they saw as my natural state of aloneness were standing in the lineup for popcorn and treats. They looked confused. Really confused.

THIS, the me now, the me with friends and with kids who climbed into my arms, THIS wasn't who I was supposed to be. It wasn't how they were comfortable seeing me.

Community-less.

With the chatter and laughter and confusion as we were at the concession stand, who wants what, what colour slushie goes with the kids pack blistering blue or outrageous orange, surrounding me, I became something other than different, other than other. I became a part of humanity. Someone who was in relationship to the world, in relationship to people in the world. The world hadn't shunned me.

Those around me had to reevaluate me now. They had to recognize me as someone who, in community, had value. They had to write a different story in their minds about the life I live and how I exist in the world.

I see this happen.

There is a man with Down Syndrome that I see downtown quite regularly. He often comes into the food court near where we live and where Joe and I stop once or twice a month. When he enters the food court, alone, he gets the same smiles that I do when I enter alone. The sad smiles. Then, when he's recognized by a group that sits deep in the food court, shout rings out, "Over here!" He sees them, smiles and waves, and head over to where they are.

The faces that had looked at him with pity and with sadness twist into confusion. They don't know how to see people who are different or who are disabled who are in relationship to the world. Who aren't naturally solitary.

There are, of course, people with disabilities who are solitary, alone and lonely. I know this to be true. There are also people without disabilities who are solitary, alone and lonely. People who struggle not for COMMUNITY but for community. This is the challenge we face with the 'community living movement' ... we are far from done.

I am thankful for the various little communities that I have. I am thankful for the gift of friendship and the gift of time and the gift they have that allows them to see me. While I don't wish to be grateful for the fact that these various little communities I have challenges them, the others who other, to see me as naturally loved, and as naturally respected, and as naturally included, I am.

I am.

Just Joking

I knew it was a joke.

I didn't think it was funny.

I do have a sense of humour.

I pulled up to the bank machine to get some cash out. There was a very tall man, in his thirties, already at the machine beside me. I paid little attention to him, he was just there. I had a bit of a difficulty in getting into place because the machine was on the outside wall of a bank and the pavement leading up to the bank machine had deteriorated somewhat. I didn't notice him notice me.

I put my card in, punched in my PIN, and then quickly followed through for the request for cash. By now I was aware that he was done, but he wasn't leaving. I looked up at him. He smiled and said, "And here I thought you people just begged." He laughed afterwards in that was that was an invitation for me to laugh with him.

Here's why I didn't laugh:

It's not funny, the poverty that people with disability experience.

The lack of accessible, and flexible, workplaces isn't funny.

Massive unemployment, and underemployment, of people with disabilities due to physical and attitudinal barriers isn't hilarious.

Public perception of people with disabilities as scroungers who beg from the public or who reach into the public purse is fuelling hatred and violence against people with disabilities.

I said none of those things, of course, there wasn't time. I looked at him and made a guess. An education one because the bank machine is dead centre of the 'gay strip' on church street. That and the little rainbow flag pin he wore on the lapel of his jacket. I said, conversationally, not with hostility, "Are you gay?"

The question took him aback but he answered, "Proudly, yes."

"Well bigotry doesn't become you."

"It was just a joke," he said, storming off.

"That's what bigots always say, don't they?" I called after him.

I met Joe at the bar, where we'd agreed to meet for a drink, a few minutes later. For the first time, in a long while, I wished I drank something stronger than green tea.