Tuesday, April 25, 2017

The Treadmill

When my power wheelchair last broke down, which it has again, I was visited by an assessor kind of person who has to sign off on my need for a new wheelchair. Foolishly, when my chair was repaired, I rescinded the request and now will have to go through it again and, of course, pay for it again. But when she was there, and when she learned that I was a wall walker, she asked if I had thought about using a walker, she thought that I'd be safer that way. I told her that I didn't think I needed one at this point and we moved on to the rest of her evaluation.

So, we spent the weekend between gigs here in Minneapolis in a hotel that has a small gym. I noticed someone using the treadmill and holding on to it as if it were a giant walker. I got an idea. I told Joe that I would like to try using the treadmill as long as he was there with me, as long as I could step up on it, as long as it didn't go fast and as long as I could grab on to something sturdy that would keep me from falling over. Joe looked a bit fearful at the idea, having been there for a couple of nasty falls in the past, but agreed.

We set out.

The room was empty and I rolled my chair right up beside the walker. I got out and stepped up on it and then we had to figure out the controls. I got off the treadmill and back in the chair as we tried to suss out what all the buttons were for, I didn't want to go flying off and I admit that I didn't want to embarrass myself. Finally we understood how to work it and I got on again.

With great fear we started it up and it went really slowly, just perfect for me. It was sturdily built and I was able to lean down on it hard, holding myself in position as my feet moved below me. It wasn't comfortable and my arms tired more quickly than my legs did, and I have strong arms. But I managed seven whole minutes. Over the weekend I got that up to ten minutes at a slightly quicker pace.

Getting back in my wheelchair felt like the most welcoming thing. I felt stable and in control and the fear of falling was, of course, gone.

I know that the idea of me on a treadmill is comic to some and, oddly, a betrayal to others, but it was just me trying something new, trying something I didn't think I could do. Do I imagine myself one day running on a treadmill? No, of course not, I'm good with that not being in the cards. Do I imagine using it again? Yeah, I do. Why not? I'm a wall walker, I'm simply using an electronic walker.

See the things you get up to when away from home for a weekend. I would never have predicted this, and, my friends, that's what made it fun.

Monday, April 24, 2017

He Didn't Believe Me

I followed them into the store, they, to a one, briefly looked back and saw me. Most dismissed me right away only a couple let their eyes linger and their giggles bubble forth. There were about eight of them. Boys and girls, all in their very early teens and all out for an afternoon in the mall. I had seen the store before I saw them heading there, it's one where I wanted to pick up a gift for a friend, and when I noticed them, I nearly turned around. But, I reminded myself, this is my mall too, this is my space too, it is my right to be here. I think I might shock you if I told you how often I have to remind myself of those simple facts.

Once in the store I saw that there was a mom there with a boy, maybe 8, with an intellectual disability. He saw the other kids come into the store and made a bee line for the back of the store. His mother called to him, and called to him, and called to him to come to the cash register and pay for his purchase. I'm sure that she heard the kids chatting amongst themselves loudly about 'special needs' and though they didn't say the 'r word' they communicated their view of him as other and as different and as less.

In their chat, they mentioned having been dropped off at the mall after church. I would not normally mention this however if you are going to be loud about your church attendance then you need to realize that you have chosen to represent your faith and your god, their casual and nearly joyful cruelty was terrible to see.

Mom wanted out of the store, her son didn't want to leave the back of the store. Joe comes in at this point and I have an opportunity to do something. I could see that mom didn't want a scene, she didn't want to confront the kids, she just wanted to make the purchase and get the hell out of the store. It had become toxic at the entry of the freshly churched children.

I rolled over by them and began telling Joe, loud enough for them to hear, what was going on. That these kids were mocking a disabled boy and, of course, me too, by how they spoke about disability with such disrespect. They heard me. I thought they'd care. They didn't. I had thought that I could shame them. I couldn't. They didn't care what someone like me said, what someone like me thought.

They also didn't stop. They began, under their breath, mimicking mom's desperate plea for her son to come to the cash register. I rolled over by him and then rolled back towards where his mother stood. He followed me, head down, like he was hiding behind me. There are times I am so freaking thankful to be tall and fat and in a wheelchair. This was one of those times.

Item is bought, mom and son are gone.

I'm in line with my purchase behind these kids. The clerk serves them and then wishes them a good day. I didn't understand why the clerk hadn't done something, he's the one in charge of the space, he's the one with the obvious power. So, I asked. I asked him if he'd heard the kids making fun of the young boy with Down Syndrome. He said that he had. He said that it disgusted him and that behaviour like that makes him want to vomit.

There was a truth and a vehemence in his words that surprised me.  He went on to say that he was in the special needs class in his school for many years, he told me of his own diagnosis and a bit of his journey. He said that he got teased daily, but that it wasn't at all like his classmates got. He said that when it happens in the store he just freezes, like he's 11 again, and alone and not knowing what to do. I immediately felt sorry for having, in my mind judged him for his inaction. Everyone has a story. Everyone has a journey.

I made my purchase and wished him a good day.

He looked at me and said, "I should have done something shouldn't I?"

I said, "You served the mom and her child with respect and with care, you were the only person in this store who modelled for those kids what dignity looks like. I think that's good, don't you?"

He nodded, but he didn't believe me.

Sunday, April 23, 2017

A Letter To Someone Who Will Never Read It

To The Handsome Young Man at the Movie Theatre,

I know what you saw.

Of course I do.

I have lived in my body and 'the community' for a very long time. I have seen myself reflected in the glass of the mirror and reflected in the eyes of those, like you, repulsed by me. So, yes, I know what you saw. 

You saw my body.

You saw my chair.

You saw my age.

But, of course, I know what you didn't see. You didn't see anything that even a warm greeting would have elicited. You wouldn't have heard the warmth in my voice as I responded to a casual hello, because, of course, you didn't offer one. Instead you offered me your face.

You probably know you are handsome. At 18 or 19, you have a good solid set of shoulders, you have blond hair dusted with bits of gold, you have the bluest eyes. I know you know that too. You will have seen it in the mirror, you will have seen your likeness reflected in the eyes of people, even strangers, who admire how you cut your way through air.

But, your face, when it shows judgement, when it curls into a sneer of superiority, when it sets hatred in concrete, is ugly.

Really, really, ugly.

I wonder if you know that.

I imagine you spend time in the mirror smiling at what smiles back. I imagine you check, maybe with some panic, for flaws and are pleased with finding none, or none that really matter. You probably have never seen the face that you showed me.

All I was doing was coming out of a door that you wanted to come through. You had to wait a second, just a second, but that was too much for the likes of me. People like me can't expect, of people like you, manners, or courtesy or decency. We are too low in your estimation. 

You made it clear who you thought you were and who you thought I was.

I am what you saw. but I am more than that.

I have a heart that loves and a heart that feels and a heart that can be generous.

But you forget, in your moment of superiority, that I see you too. But you don't think about that. You don't think about that face of yours, you don't concern yourself with the angularity of your movements when angry, you don't think of that fact that while you cannot, at that moment, see inside of me, I can see inside of you.

I am more that what you saw.

I hope, I really hope, that there is more of you than what I saw.

And yes.

You should worry about that.

Saturday, April 22, 2017

Even Us

It took some work but we managed to replace the footrest on my chair. We found a company, Reliable Medical Supply who were able to assist us quickly, easily, and without fuss. I rode out of the building, the new footrest on and I felt completely restored. I'd ridden around pushing and holding my one leg up at the same time for a couple days and as a result had pulled muscles in my back and tired those in my leg. I had to ask Joe to push me a couple of times, but only when, on break, I had to get to the bathroom quickly.

At the end of the day we went to a very large grocery store that, miraculously, wasn't busy. I set to doing a very long push, up and down every aisle and back and forth across the store. I needed to exercise but I also needed to feel in control again. It was great. I knew I'd done a long distance, I had tired myself out, and I knew sleep would come easily.

There was a moment though that I wanted to tell you about. We've forgotten our blue badge so we can't park in wheelchair parking. It had been raining so Joe let me off at the door and, though there was quite a up slope into the store, I knew that I could do it easily. I was pushing up when a customer coming in ran at me, arms out, ready to inflict help upon me. I didn't see her coming.

I did hear a voice saying, "Don't, he didn't ask!" When I got to the top I looked back to see a young woman with Down Syndrome, standing watching me. She stayed and waited until I was up the slope and in the store. I thanked her.

She said, "I hate it when people just help me. It's just another way to call me stupid and helpless." I told her that she was right. I didn't like the message behind unasked for help.

Ban the 'R' word in speech and in action.

Ban the helpless image in speech and in action.

Speak with respect, act with respect, it's all that anyone really wants.

Even us.

Especially us.

Friday, April 21, 2017

Urine, My Post and A Comment

Yesterday I posted something I thought very funny on Facebook. I had been rolling around in the pharmacy department of the grocery store where we were shopping and I noticed, for no reason at all, that they had a huge selection of men's incontinence wear. I  really surprised that, at my size, they had some that would fit me. Hell, I have to go to to big and tall store to buy clothes and here were incontinence briefs in my size. I joked with Joe that now I could relax and grow old. We both laughed. I that I was going to put this on my Facebook page.

And I did.

Oh happy day!
I was rolling around a pharmacy and discovered that they have men's incontinence products in my size. I can relax and grow old.

Immediately people began responding, I was gathering a lot of 'likes' and a lot of smiley faces. I was glad because I thought it funny too. The someone responded saying that they were surprised at my post and asked if I was making fun of people like her son who, because of his disability is incontinent and doesn't find it funny.

My first response was a little bit of annoyance, let's be honest here, because, to me, obviously I was making fun of me, my size and my age. It was just a joke. A few seconds later, I can't think while annoyed, I clearly saw her point. I didn't have time to do anything other than delete the post. It wasn't a hard decision for me. I hadn't thought through what I'd written and what it could mean to others. My bad.

Then I received several messages saying I shouldn't have taken it down, that it was funny, that in this case it was obvious what I was joking about, that people are too sensitive, that I shouldn't censor myself because of the sensitivities of others.

It was the last one that got me, I shouldn't censor myself because of the sensitivities of others. That's the one that made me glad I had done what I had done. Because of course I should. I don't want my writing or my speaking to cause unnecessary pain or distress to people. I want to challenge people, that's my job, but when a joke, which has no meaning other than to be a joke, is one that could easily be interpreted as making fun of others, in this case, others who wear incontinence products, I am compelled to delete it. Of course I am. Moreover, I'm glad she came on and had the courage to challenge me.

Dialogue isn't to convince others you are right.

Dialogue exists so that both parties learn, both parties grow, both parties end up examining their points of view.

I hope people continue to take me on and say, 'hey, do you hear what you are saying' ... I am old enough now not to be threatened by the idea that I'm not always right. That I get things wrong. That I don't always think things through.

It doesn't matter that I wasn't meaning to cause hurt or offense, what matters is that I did.

So, it's a simple solution.

Take it down.

It's important to say that I've had people rant at me (and no ranting happened in this situation) about taking down posts wherein I speak of people with disabilities having voice and choice and adult goals and dreams. I examine the posts and if I still believe that what I said is accurate and important, I don't make the change.

This wasn't that.

And because this wasn't that, I took the post down.

Because that's the right thing to do.

Thursday, April 20, 2017


I am again facing wheelchair problems. After arriving yesterday we decided to go out for lunch. Got out of the car and into the chair and SNAP my footrest broke off. This happens often enough to be tedious and it meant that we had to go into the restaurant and then do some shopping with me pushing while holding up one leg.

This is hard.

The good thing is my fitness level has changed since last a footrest broke and I was able to push fairly far and fairly fast even under these conditions, but, it needs to be fixed quickly. Have found a place to replace it and will get a new set tomorrow.

We were lucky this happened after getting through the airport and into a rental car and to the hotel. The big stuff was done. We were also lucky that I had the ability to manage with it fairly well today but that's where the luck ends.

This is a trip where I decided to challenge myself. I'm doing three brand new lectures, one of them a full day workshop. I didn't need to have the additional challenge of wheelchair problems along the way. But things happen when they happen and we deal because we have to deal.

Tomorrow my chair should be back in business.

I'm hoping that the universe understands, that, I'm not in need of any more lessons for a little while.

Wednesday, April 19, 2017

A Third Option

We arrived at the airport and I pushed myself to the check in area. There I was spotted by a woman, an employee, who came over to ask me if I needed to go to special services to get me to the gate, then she looked at Joe and said, "Or, will you be taking him?" I said, archly, "There is a third option, I can take myself there." She looked flustered and trying not to slip into annoyance, "I suppose."

Now, I'm not quibbling with her pointing out where special services was, I know where it is, I'm a frequent flyer, but many wouldn't. I was just annoyed that my ability to get myself where I was going was simply discounted as an option. I'm disabled. I must need help. That is the natural order of things.

Now, there isn't anything wrong with needing help or asking for help. What's wrong is the assumption that, of course you need it. It would only have taken her a few more words to make the interaction respectful rather than disrespectful.

The option of independence.

The idea of self reliance.

The possibility of competence.

The lowering of expectations for people with disabilities is a killer. It kills the will to try. It kills the push to push. It kills the desire to dig deeper wells.

More, there is a real need to please those who need to be pleased. Her annoyance, while hidden as well as she could. was real.

Later that same day Joe and I were going out a door. A clerk who worked there dashed to the door saying that they'd hold the door for us. Joe was already through and holding the door. I said, "It's okay, we've got this."

We heard a loud exasperated sigh, then, "You mean I'm not needed?" It was said as a joke. But it wasn't a joke.

I see so many people with intellectual disabilities who bow under the weight of others needs to be needed. I see so many who live limited lives because of limitations set by others. Tragic.

Meaning well isn't okay if doing harm is the result.

When I say, "I've got this."

Trust me.

I do.

Tuesday, April 18, 2017

Being Nice: Part 3

I know I will, throughout my day, need help unexpectedly. I will drop something under my desk. I will need something carted from my office to the board room, and back. Any of a thousand different things could happen where I would need to ask someone for help. A thousand different things that non-disabled people would not need help to do. Luckily for me it doesn't happen a lot, but in order to say that I've had to redefine 'a lot'. Once or twice daily, isn't a lot is it?

My strategy was to go to the 'designated kind person' route. I spoke to a couple of people at work who I really thought wouldn't mind. It was hard doing this because I can't think of a single person at work who would mind. Most probably I went with people I felt comfortable asking for help. I chose well, they agreed without question. That's when I really kind of discovered that once or twice daily may be a little closer to 'a lot' thank I'm good with.

Even so, I went with this system. Even if there was someone else I could ask, I'd wait for my designated kind person to come by, or I'd call for them. They were always good about it. But I noticed that those who were closer, or those of whom it would have been more natural to ask for help, seemed to wonder why they had been excluded from the request.

I had been exploiting the kindness of a couple people because of my discomfort in asking other people. I laid it all on them. I know, I know, I know, it didn't bother them and, in fact, they seemed to enjoy helping out, but that didn't matter. It wasn't their help I was using, I was using them to avoid asking others. I was using them when I didn't need to ... a kind of exploitation of their niceness.

Well, a couple weeks ago I stopped doing that. Nice does not mean, up for exploitation. Nice does not mean being on an exclusive list to be helpful. Nice does not mean 'use me'.

So, as I joke about this, "I spread the joy around." I was right, everyone at the office is nice about it. No one minds giving a quick hand. And two people are no longer on the hook for my every single need, it's shared around by who's around. It was hard for me to start asking others, there's a vulnerability in acknowledging need and accepting help, but I needed to do something to ensure that someone's niceness doesn't land them the responsibility of meeting every single need for help that I have.

Nice has boundaries.

Nice should never be exploited. (even by me)

Nice should always have the ability to say, 'No'. (even to me)

Monday, April 17, 2017

That's Nice (Part Two Of A Series)

She's starving.

Her staff can see that somethings wrong, but she won't talk about it. She needs little support, she can manage her own money, she can shop and cook nutritious meals, she is well liked in the building in which she lives. When staff visits, she's strict about her privacy. They can come in for tea, but they are not allowed in her kitchen or her bedroom. She had always before enjoyed the staff's visits, because she got lonely and liked the chance to chat about ordinary, every day things that were going on in her life.

But now, she just wants them to leave right away.

Finally, when she's too weak to resist, they get her to her doctor's office. She's extremely malnourished. The staff find out that she hasn't eaten a real meal in weeks. She has no food in her home. Nothing.

She is hospitalized for a few days. Her state of health has been seriously compromised. At first she didn't want to talk about her kitchen, the lack of food, and the reason she hadn't eaten. But finally she said that she didn't have any money because she was helping out her friends.

They were nice to her.

She wanted to be nice back.

So when they asked if they could borrow some money, they always seemed to know when she had any, she gave. She gave until she bled. Once when she tried to hold back some money, to get groceries, her best 'friend' asked her not to be mean and joked that she could stand to lose some weight anyways. She handed the money over, her friend said she needed it for rent.

As they tried to talk to her about it, she kept saying the same thing.

They are nice to me.

I need to be nice to them too.

I like to help out.

I was taught to be nice to everyone.

They won't be nice to me if I'm not nice to them.

If they get mad at me I won't have any friends.

I'm a nice person, I help people out.


Nice isn't subservience.

Nice isn't manipulation.

Nice has boundaries.

"No," doesn't erase "Nice."

Staff had never noticed, on their visits, that she was lonely, because at the moment of their visits with her, she wasn't lonely. They felt good about the visits because she appreciated them. They got into the habit of visiting her, of being on a social call, that they forgot the had a job to do. They never asked why their visits mattered so much when she needed no assistance from them at all. They never spotted her loneliness and therefore never realized the vulnerability that comes with  it.

They knew that she took pride in being nice. They knew that she 'would give the shirt off her back' and spoke of her in those terms. They didn't realize that it's just a saying, it's not a way to live one's life. They didn't think of the vulnerability that comes with the compulsion to be 'nice' to be seen as 'nice' and to respond always in a manner consistent with the popular conception of nice.

I'm not staff blaming here. I'm really not. Until the fact that she was starving started to show, there were no real signs for the staff to be concerned about. No one teaches people with disabilities of the true social dangers of the community, true. But no one teaches staff about the fact that people with visible intellectual disabilities have a target on their back and need a different kind of support when living independently in the community. Inclusion has sharp edges, but no one ever spoke to the staff about them and no one taught her how to avoid them.

We have taught people with disabilities ...

to be compliant

to be helpful

to be nice.

We have taught people with disabilities to make themselves vulnerable to others. And to themselves.

Nice has boundaries.

"No" doesn't erase "Nice."

There's work to be done here.

Her doctor said, "She could have died."

Nice and the drive to be nice can be a bullet aimed at the heart.

Sunday, April 16, 2017

My Faith, My Family, My Easter

My faith, whatever it goes through throughout the year, is strongest at Easter.

I am not supposed to be a Christian.

By loving me, God is acting in defiance of Christian doctrine.

Being gay, excludes me from the family of God, though any family that excludes and banishes its children us unworthy of the word. I am routinely questioned about my faith from those who call themselves Christian and those who damn me for calling myself one. "You can't be Christian, you're gay!" "Why would you call yourself a Christian, you're gay." These questions asked as if something as deep as my faith could be easily taken off or turned down.

Gay people and disabled people, both, have legitimate concerns with the church, with the history of demonization, with seeing difference as see, and with looking at the world through the eyes of fear. I understand when activists ask how I could believe, how I could associate, how I could be so public about a faith that has done so much damage.

I have been affected by the rejection of other Christians. I have been affected by the words of preachers who would heap down on us death and calamity. I have been affected by the stubborn idea that disability is sin made flesh. Of course I have.

There are times when my faith is sorely challenged.

There are times when I wish I didn't believe.

But, then, there's the fact, that I do.

My faith though is in the person of God, not the creation of humans. It is my relationship with that singular God and not the actions of those who claim God, who stake God out as territory, who put words in the mouth of God, that determine what happens in my heart.

It is at Easter that I most powerfully reconnect with how I understand who God is, what the miracle, through Jesus was, and why I wish to renew afresh my commitment to what I believe. For me, the gore of Good Friday, is not where the power of the story lie. Right now, all over the world, bodies are being broken, lives are being taken, people are being dehumanized. 

LGBT people are being thrown from rooftops, gathered up and tortured in concentration camps, slandered and scapegoated in churches across the world. And still, we love.

Disabled people are locked away in institutions, are murdered to the applause of the media, are centred out as being in need of prayer and healing. It is clear that there is a stairway to heaven and that there is no ramp at the back door. And still, we live.

The list is endless.

Religion and difference.

Religion and gender.

Religion and race.

Religion and hate.

And still, we rise.

That's the story of Easter isn't it. That in a world where crucifixion is possible, where the crowd will cheer pain, where the good-hearted stay silent in the face of the persecution of others, Jesus rose.

Why would he want to?

Why would he still see worth in humanity?

Those are the questions I still can't answer. But in the act of defiantly loving, I am captured, I am moved and with which I wish to identify.

It's Easter.

I will go to church.

But I don't go to meet God.

Because we've already met.

I go to defiantly claim what's mine, and continue the radical act of believing that, no matter what anyone says, I am a member of this family. 

Saturday, April 15, 2017

That's Nice (Part One)

Most of the time it's just a simple, pleasant way to live your life. Most of the time, it gives you a high quality of life. When I was a boy, even though I was considered a fat, dumb, kid, I noticed that there were those people in the world who were just simply nice. I'm not talking about 'polite nice' but 'actual nice.' I have a very strong memory of a party that my parents once threw at our house back when I was maybe 9 or 10 years old. By then I had already grown uncomfortable in my skin. I didn't like to be seen or noticed. But you simply can't hide being fat, you can't hide the shame that you feel because you don't fit into, well, anywhere very well.

A woman came to the party, a guest of a guest. I don't remember her name. I wish I did. I could tell she was a bit uncomfortable because she didn't know anyone else at the party. She noticed, when I slipped into my room, that I had a collection of glass figurines, all of dogs. Rows and rows of different breeds, I picked each with care and with growing expertise, both in my knowledge of our canine friends and in my awareness of what made a notable figurine. Before I got through the door, she spoke to me asking me about my collection.

I shyly opened the door for her. Leaving the door open, she pulled a chair into my room after asking me if it was okay that she did. I'd been set up so many times that I was extremely wary and did not trust her intentions. But I relaxed as we talked about the collection and then, to my shock, about me. She told me a it about herself and her life growing up with dogs. I told her about how I saw dogs as more than pets, but as companions and, even, friends.

About a half hour later someone came to the door and encouraged her to come out and join the party, she said that she would in a moment. We talked a little more but I noticed her glance to the door and I knew our time was winding down. She told me that I was a really interesting little boy and she wished me well. Later, I heard someone teasing her about spending time with me, "I can understand you feeling sorry for the kid but you must have be bored stiff." She defended me. Said that the conversation she'd had with me was the most interesting one that she'd had that evening. "You are too nice for your own good," she was told.


So that's what nice means.

Being able to see in others worth.

Being able to invest time with others because of their worth.

There are many other definitions of 'nice' but that's the first that actively came my way. Up until then 'nice' was just a word for something vaguely pleasant or pleasing. It was a word that with a change of tone became an insult. But at that moment, it became something more powerful than that.

At that moment it became my goal.

And she became my role model for how I wanted to be, I didn't know what I wanted to be when I grew up, but now I knew how I wanted to be.

Friday, April 14, 2017


It's been a long week.

And I'm still weak.

But I'm better. I fell ill on Monday and it worsened over the week. I had three days off from work, but had to work Thursday, but came home and near collapsed from exhaustion.

People think otherwise but I don't actually get sick often. Particularly as sick as I have been. I hadn't left the apartment for three whole days. Three days! I go out every day. I love going out. But I couldn't. I didn't have the strength, and was sensitive to noise and smells and things I typically find tasty repulsed me.

It's been a long week.

I'm up today but feeling the effects of yesterday and already I can see the plans for the day shrinking away from me.

For me, and how I experience my life and my disability, sickness isn't a part of it. I am much more debilitated by the flu or when I get an infection or even when I get a cold, than I am because of a silly wheelchair. I wasn't housebound because I'm a wheelchair user, I was housebound because they don't put vomitariums at discrete locations throughout the public sphere.

Already, from typing this, I'm tired.

So, I'm back to lie down. I've got a good book, The Gustov Sonata, that I'm reading, a perfect choice with short chapters and characters I care about. I'm going to go and spend time with them, and my pillow and hopefully I'll wake to a new store of energy or, if not, the ability to go out, even for five minutes.

Tuesday, April 11, 2017

The Comment Not Made

I saw a post on Facebook yesterday written by a woman who, that day, was getting a wheelchair and she was devastated. The comments were all caring, if ablist, about how hard she fought for, with an implied loss of, her independence. Now, I don't know this woman. I see her name every now and then as I read her posts. But the fact that we are friends on Facebook means that there is a disability connection somewhere. But 'friend' on Facebook, for me, is most often 'stranger' in the real world.

I felt that yesterday.

The comments were all from people who seemed to actually know her.

I wrote perhaps ten or twelve responses, and published none of them. I simply couldn't post them. I just couldn't. Even though I tried to be as kind and caring as I could be, even though I tried to give an optimistic point of view, I just felt that, at that moment, I'd be intruding.

I know, I know, she published it publicly.

I know, I know, the comment section is there for a reason.

But I also know that there are times when people need something different than what I have to give or than what I want to give. There are times when people need to feel what they are feeling without challenge and without implied confrontation. There are times when people don't need me and my agenda.

Yes, I know what it is to transition from walking to chair.

Yes, I know the difficulties that brings.

And yes, I know, that the difficulty it brings aren't the ones that are expected.

So, yes, I thought I had something to offer. But I read what she'd written, a singles sentence. I read the emotion behind it. I read what I thought she was asking for. And I decided she didn't need a dose of optimistic prattle about the positive life changes that can come into your life on wheels. It's all true, but it seemed, to me, at that point, to simply be insensitive.

But, I also felt a responsibility to let her know that if she let it, this could be the start of a whole new way of being independent.

And the battle raged in me.

Comments were written.

Comments were erased.

And in the end, I said nothing.

I simply let it go. That was hard to do. And it might have been wrong.

It's not always easy knowing how to best respond, and it's really not easy to respond by simply shutting up. She'll never know the battle I went through. But I hope, in this case, my silence was my way of letting her have the time and space to feel what she needed to feel.

It's complicated being human isn't it?

Monday, April 10, 2017

A New, And Apparently Bad, Game

We'd just gotten into the car to head off to the Palm Sunday service at our church. and Joe fired up the engine after all the seat belts were well and truly secured, when Sadie asked to play a 'car game' called 'ABC Animal.' This is a game that has been played over many, many years and across thousands of miles and it's one that everyone but Sadie has lost interest in playing. My tolerance was a little lower than usual, because I usually can work up the enthusiasm to play the game with her, because I wasn't feeling particularly well. I sat back into my seat and said, "I know a game we can play, a brand new one."

Both kids asked excitedly what the game was. I told them that it was where, on our way to church, we all sit in silent wonderment at the beauty that God has made all around us.

There was a short silence, in which I could hear their minds thinking just how bad a game that would be, when Sadie said, "That sounds like a really bad game, I'm never going to play that!"

Joe and I cracked up.

Out of that came a new game. We decided we'd look for G.O.D. we had to spot words that started with either a, you guessed it, G. or a O. or a D. So that's what we did. People called out Gerrard Street! Ontario Medical! Disability Supplies! We laughed as we played and talked about what we were seeing.

We played the game on the way home too, surprising them with a stop at Dairy Queen after church. The fact that it began with a 'D' was just a bonus.

After lunch we went over to the Gardiner museum where they got to take part in an class on the use of clay, making flowers and pots and a man in a bathtub (?) and then take a tour of the new show installed as part of Canada's 150th anniversary.

It was a busy day.

When I went to bed I thought about Sadie's remark about the really bad 'game' I'd made up and realized that I must think it's a really bad game too because I certainly don't play it enough.

So, I'm going to aim for a little more silent wonderment at the beauty all around us, and I'm going to throw in a little dose of noticing the beauty within each person I meet too.

Let's see if this game has the traction that ABC Animal had.

Sunday, April 09, 2017


We were huddled up around the soup station. Sadie loves soup. Joe loves soup, I like soup and wanted to see what the veggie options were, Ruby reviles soup and was just with us to see what decisions were being made before she went over to the mac and cheese station. Joe was reading off the labels as to the kinds of soup available. We were together, we were a group. A man, on the other side of the station, looks to me, and says to me, "Can I help you get something." I startled say, "No, thanks though." He nodded and continued on getting soup for his family

Later, when we were leaving the cafeteria I got to the doors out only to find that the door opener wasn't working. A large group had gotten between me and Joe and the kids so I just stopped to let the group pass and then rejoin mine. One of the group held the door open and told me to go along through. I thanked him but said no. The area around the elevator up is small, I didn't want to get trapped in the larger group. I wanted to wait. He insisted. I said, "No, I'm here with my family, I will wait for them." He insisted again. I said 'no' again. He insisted again. I explained again, "I'm waiting for my family, please go on through." Then Joe, Ruby and Sadie arrive, by now most of his group has gone through the door. The kids see what's happening and run to take the door from the man to hold for me. He has trouble letting them take the door but he does. "I really thought that you were alone," he said, smiling.

The natural state for people with disabilities, or at least people with disabilities that look like me, is alone.

People have trouble thinking of us as being part of a loving social group.

People seem to actively want to think of us as sad, isolated, people, loved by none, included by no one.

In their minds, that's what disabilities does.

It separates.

It isolates.

It culls.

The man by the soup station, even though I was clearly part of a group, couldn't see that group, he saw a person alone, and person who needed help. I can't even imagine how desperately dark and depressing the scene he must have been seeing. The context for me being there he created sprung from somewhere.

The man holding the door simply couldn't believe me when I said I was with a 'family'. He saw me as alone. He saw me as needing help. Another dark and depressing picture. Another projection of inner stereotype on outer reality. He heard what I said and must have thought that I was making up an invisible family in a desperate attempt to be seen as normal, and as loved, and as worthy. His surprise when they showed up was written on his face in the colours of prejudice. 

This to me, is the most dangerous idea that has wormed it's way into the minds of the non-disabled. 

Disability creates isolation.

Disability is a separator.

Disability erases love and replaces it with need and dependency.

Objects of pity.

But, wait.

I sit in my chair unalone.

Already, and continuously, human.

Already, and continuously, loved.

I am unalone and unavailable for pity.

Both men shook their heads one at my refusal of his help, the other when the girls took the door from him. I was no use to them. No part of the story they wanted to tell. What good is disability if it doesn't feed the need of the non-disabled to be inspired by their own kindness and their own goodness? 

They shook their heads.

A denial of what they'd seen and heard.

Because to challenge prejudice is such hard work.

So why do it?

Saturday, April 08, 2017

Personal Best, Personal Worst

This post is not about my quest to achieve a 5K push. But. It begins there.

Yesterday I thought I had it in me to make 4K. I'd done some smaller pushes but had topped out at 2.6K. But I was itching to try for 4 and I'd arranged it so that I had time to give it a try. These things can be boring for Joe but he knew it was important to me so had arranged to walk with me some of the way but to go off and do other things when he felt the need to. You see, I can't talk to him when I'm pushing, I have to just simply push.

We were at the mall that we go to do to his, a place that is well known for it's mall walking program primarily because it's a really big mall. One circuit is 1.3K. Their map marks out different lengths of walks. I had the pathway in my head and I started. I made the first round in 31 minutes, which, for me, is a record. But on the second round, something changed.

As I went round it seemed that I caused a ripple as I went round. People turned. People gawked. People spat out hateful words. I went by a group of small boys with their dad, they saw me and began a loud, "Look how fat he is dad, look, look, look!!" One boy asked his dad how come I was so fat, his father answered simply, "Fat people are just really lazy." I was on my second round of an attempt to do 4K in a heavy wheelchair and being called lazy.

Next up were a couple of women, who watched me approach and as I went by one said to the other, "That is a whole lot of ugly on wheels," and they both howled with laughter as I went by. It was said for me to hear, it was said for all around to hear, and others, a lot of others, joined in the laughter.

As I approached the food court a man was sitting with a baby carriage in front of him, they were directly in my path. I began to change the direction of my chair to go around them, when he pulled the carriage in and out of my way, just I was about to breathe out a 'thank you' he said, "Must be awful to always be inconveniencing people." Inconveniencing people?! I was pulling around him, he chose to move. And since when in simply being considerate and inconvenience?

There was a brief spell of nothing, people were either rushing in or rushing out of the mall thorough the the big exit doors there and I enjoyed the quiet and the temporary spate of invisibility. I pushed on and I pushed hard. There's good flooring there and I could make good time. The respite would prove to be temporary, it picked up again.

I felt as if I was swimming through hate.

But I didn't stop.

Until I couldn't push a bit farther. I knew where the 3.25K mark was and I aimed for that. I got there and as it happened Joe joined me for the last few feet of my push. I came to a stop and told him that I simply couldn't do the last .75K. Everything hurt. My thumbs hurt. I propel this body and my chair with my thumbs. I had to ask Joe to push me to the washroom because when I stopped my body seized up. Coming out of the washroom, where I had used the privacy to do some cool down stretches as well as the TMI stuff, and I was able to push myself to the food court for a bite to eat, a bottle of water, and rest.

I told Joe what had happened and what people had said, he told me that he had heard some of it. He wondered why I didn't react. I told him that I wasn't there that day for anyone but me. I wasn't there to confront anyone's prejudice. I wasn't there to be an educational opportunity for the mean spirited or the bigots. I was there to accomplish a goal, which I very nearly did.

But I also told him that it made the pushing harder, it was like the air became heavier and the pushes took more energy, simply because I had the work of pushing the chair forward while pushing my anger and my hurt and my words of response to the side. It wasn't easy.

In the end I did a personal best even while surrounding people at their personal worst.

Friday, April 07, 2017

Meaning Matters

My disability has meaning.

My disability matters.

I just had someone say to me that they 'don't think of me as being disabled.' I'm afraid I rather lost it on them. Sadly, I was a bit incoherent in my response because the statement upset me so very much. You see, like many people with disabilities, I'm fairly skilled at being disabled. I know how to exist in this world. I know how to adapt to the environments I'm in. I know how to make difficult things easier. I know when I need help, I know when I don't. I'm the expert in my own disability, my own body and my own adaptations.

I get that, because of that, someone may see me getting along just fine in the world. I get that they would translate that into the 'I don't see you as disabled' compliment. It's not a compliment, of course, it's a veiled insult. Disability is the opposite of competence. Disability is the opposite of getting alone. Disability is the opposite of accomplishment. Even so, I shouldn't have told him to 'shut up.' And I shouldn't have told him that so loudly.

At the moment that the non-compliment was given, I was exhausted from having a difficult night with the pain which I experience as a result of my disability. I spent much of my night moving from one to another to another of the positions which I can sleep in, each beginning with a relief of pain and each slowly waking me with its return. At the moment of that non-compliment I had just pushed myself up a steep hill, which I do normally, but today it was snow covered and I was having to use a pushing technique that I can do but that I find difficult. My coping, my adapting, my endurance was erased by that statement. Even so, I probably shouldn't have dropped the 'f bomb' several times during my response.

When they say that I have 'the lived experience of having a disability,' they are right. However, when that 'lived experience' is one that becomes invisible as I learn more every day about what I can and can't do and what adaptions work in what situations and how to orient my body in my chair in order to do what I want to do, people assume that the 'lived experience' isn't really all that different than the 'lived experience' of those who walk and those who move through air as if it has no weight. At the moment that I was granted non-disabled status, I was feeling my disability in a very real way. It held meaning for me, and that meaning mattered. The dismissal and erasure of that experience angered me. Even so, I probably shouldn't have used both 'ablist' and 'asshole' so closely together in a sentence.

I suppose I have an apology to give.

But what troubles me, is that I'm sure an apology is expected. I'm sure he feels the innocent victim of my anger. I'm sure he sees himself as the one who gave a compliment and me as the one who lost a wee bit of control. So I will apologize, but for how I said what I said, but not for what I said.


Disability matters.


It means something.

Thursday, April 06, 2017

Getting Bumped

Yesterday I arrived at a meeting nearly an hour and a half early. Traffic had been better than anticipated and, then, well, um, I got the time wrong. So in that hour and a half I decided to lap the mall that the restaurant was attached to, I mean, why not?

Joe decided to head off and do some other stuff, he was with me to provide transportation and to sit in on the meeting, while I did my laps. So, I began. I hadn't really done any long distance pushing since my trip to England and my muscles were a bit resistant, particularly when they woke up and realized what was happening, but I pushed through it and I pushed hard. The mall wasn't busy so I had long stretches I could go at maximum speed.

There was a young man in the mall speed walking, he was maybe 20 or 21 years old and he lapped me a couple of times. He was very, very, fast. On his third lap he put his fist out for me to 'fist bump' I think it's called, and I did so, without really breaking my stride (what do you call it when pushing cause stride isn't the right word?). It was a nice acknowledgement from someone else in the mall doing what I was doing.

The next time he lapped me he slowed down his pace but spoke really rapidly. He quickly explained to me that he wanted me to understand that he didn't fist bump me because I had a disability or for any other reason, it was just because we were both obviously working out and it was a sign of encouragement and camaraderie (he didn't use that word but that's what he meant). Clearly immediately after we had 'bumped' it worried him how I might perceive it. This impressed me because sometimes people do stuff to people with disabilities that are really about us being disabled rather than us being part of a group focused on something else. That he would know that and worry about it was a bit of a surprise.

I told him that I saw it as acknowledgement between two athletes and I laughed self consciously at the use of that word in reference to me. I'd never used it before and it felt uncomfortable.

He said, "Don't laugh man, you are really fast in your chair and you work hard, the word works."

Maybe it does.

But, I'm not there yet in how I see myself.

Wednesday, April 05, 2017

Us and Them Full Circle

I ended up chatting with a young fellow, to me that's around 30, with a disability on a ride to work. He asked me what I did for a living and then told me about his job, about which he was quite proud. Without even lowering his voice to become conspiratorial, he openly said that we weren't like 'those others.' And while he is right, the employment rate of people with disabilities is abysmal, it is so because of employers refusing to make accommodations either to their workplaces or to their mindset. I didn't want to feel like he thought I was in a club with him, 'employed and valuable' v 'unemployed and of significantly less value.' So, I said so.

He vehemently disagreed and did the 'if I can do it anyone can' kind of speech that people find so inspirational. It's not true of course, but people love that shit. Non-disabled people realize that since Chis Hatfield could be an astronaut then so can they. Time and talent and opportunity matter. Not everyone is fit for the same path, we are all resolutely making our own way and cutting our own path. I told him that I thought that argument 'nonsense' ...which was probably the wrong word to use and he reacted in a manner which I should have anticipated, he got angry.

It was very important to him that he not identify with 'those people' and it was clear that he identified with 'valued working people' most of whom are non-disabled. He felt that his work raised his status and had him accepted as equal to his non-disabled colleagues. His value as a person was diminished by his disability but then enhanced by the fact that he held a job and was respected at work. He was shocked that I didn't feel the same way, that I belonged to a, though he didn't say this exactly, 'different class of disabled person.'

Then. THEN. He said that it annoyed him when people assumed that he was ... and here he used the r word ... maybe the first time I've heard it spoken in casual conversation by another disabled person. That 'those people really had no place in a modern society. I challenged him on his use of the word, his hatred of people with intellectual disabilities and his own deeply held self hatred.

It devolved from there.

When he got off the bus, the driver joked that he was relieved that we were bolted down on each side of the bus to keep us from getting into a brawl.

I've been bubbling this interaction around in my mind for a long time now. Because what came of it for me is that I do think that there is a 'right' type of disabled person, one that his part of the disability pride movement and who values the disability experience and one who lives without need of approval of the non-disabled. He's not that. I'm having trouble not valuing him less.

That makes me as bad as him.

I need to examine ways to love the disability community, with all its parts, even the one's I disagree with. I have something to learn from them too, I don't know what yet, but I know I do.

Tuesday, April 04, 2017

A Little Accident

I just had a food accident. On the trip from fork to gob there is a bit of territory over my shirt that has to be traversed. A piece of yolk leapt from it's bed of toast and landed on my shirt just beside the buttons, near the top. I quickly brushed it away and in doing so drew a line of yolk down the front of my shirt. I tried to wash it off but it just made the line bigger.


I have to start work with my shirt looking like there is a yellow caution line running down the right side of my heart. I try to mask it by making a fold in my shirt but then realize that the fold is more obvious than the offending yellow streak and would have people wondering what I was hiding beneath the fold. Given I'm in Canada the first thought wouldn't be 'weapons' ... but who knows what else they might come up with.

I've decided to just leave it there and pretend it's not there, or pretend it's part of the design of the shirt ... 'what you don't have the latest in men's fashion, yolk yellow chic?' Besides we all say that it's what's on the inside, which in this case is the rest of the yolk. But then they say that 'clothes makes the man.' Um, I hope not, even on a good day with yolk-less shirts, I hope that's not true.

So I'm going to just let it be and face the day, yolk and all.

If this is the worst that's going to happen to me today, it's a pretty good day. If you think that something like this has to power to upset me or my day or my plans for my day - yolks on you!

Sunday, April 02, 2017

Helping Joe By Helping Me

I'm glad I started weight lifting.

Now don't think of me as anything more than a sit in the wheelchair and lift 25 pound dumbbells 30 reps, 10 at a time, in 8 different ways kind of guy. That's for me, weight lifting. But besides the benefit of being able to push myself further and further and up steeper ramps, there's another benefit.

A few days ago Joe started to complain about pain in his shoulder. He's got a doctors appointment all set up to check it out, but until then I decided that he would no longer load my wheelchair in or take it out of the trunk. I would take over that duty.

We arranged for me to do this in an underground parking lot with no one around. I didn't want to fall or look foolish in front of an audience. I needed to learn how to pick the chair up, how to position my body, how to get the car from trunk to ground and all without falling over myself. The first time wasn't pretty. The second time still wasn't pretty but it was effective.

So it's been a few days now that Joe has been able to completely rest his shoulder and that I've been getting the chair out of the car. I'm still a bit clumsy doing it, but I do it. The strength isn't the problem, it's the ballet movements involved in positioning and lifting, that's the issue for me.

Today Joe said his shoulder was feeling slightly better. I was so pleased. He's still going to see the doctor to check it out, but I felt that I was actively helping him to heal.

He does so much for me, it's nice that in doing for myself I'm doing for him.

It's nice to have the strength to make this an option.

Balance would be another thing, but there aren't weights to lift for that!

Saturday, April 01, 2017

An Apology Too Late

I was startled when I saw his name of the 'Today's Birthdays' list on my FaceBook page. Of course, I realized, FaceBook doesn't know that he died last year. I clicked on his name and was taken to his page. It's still there and several people used the opportunity of his birthday to write about what he meat to them and how much he was missed. I tried several times to write something, but I couldn't.

I had been thrilled to reconnect with him when I found his name of FaceBook. We chatted a couple of times and the old guy in the pictures I saw of him became the young guy I remembered. He was a sweet kid. I liked him. At one time I called him a friend. I had been steeling up to have a hard conversation with him, and I was nearly ready, when he passed away. It's a conversation I'll never have, it's an apology I will never give, and for that, I grieve deeply.

I needed to say, "I'm sorry."

We were in grade 7, I think when it all came out. But, I'm getting ahead of myself. In the town I grew up in there were two schools, the elementary school and the high school. One went from grades 1 to 6 the other from 7 to 12. We were all excited to be in the high school. Adjusting to the move from the oldest in one to the youngest in the other was difficult but the move, for all of us was more than symbolic. It was a real representation of our progress towards adulthood and, as we naively saw it, freedom.

Walking into a classroom to see one of the teachers from the elementary school there was a shock. He had been transferred to the senior school and none of us was particularly happy about that. He was an odd man. His oddness wasn't immediately obvious. In fact he was a good looking, highly presentable guy, who took care of his appearance. He was well spoken and gracious. In all senses he was a 'good role model' for us boys.


He wasn't.

He was a teacher that often broke boundaries. He had favourites amongst the boys. He would take those boys who did best on the spelling tests on camping trips as rewards. They were nearly always the same boys. I wanted to go. But I never scored high enough. We never saw the scores of the winning boys, we just assumed that truth was being told and those kids were the best, the very best, at spelling. I don't remember if the fellow I'm writing about ever went on a camping trip.

But I do know that he became teacher's target in high school. He was smaller than all the rest of us, he would physically mature a grade or two later. I remember one day in particular. The teacher had been in an mood for the whole class. He was making jokes that none of us understood and behaving a bit erratically. I was in the desk beside the target boy. The teacher came and sat on his desk, said some silly things, and put his hand out to touch the student's face.

He squirmed in his seat. He glanced around him at all of us. Some were laughing. Most were not. We could see pain and fear all over him. Not just the expression on his face, but over his whole body.

A word formed in my mind.

A word reached my lips.

"STOP!!" was the word that I didn't say.

I let it happen. In front of me. I knew it was wrong. I didn't know how wrong it was until later that year when the teacher was arrested and charged with sexually abusing several of the boys in my class. It had taken years for it to come out. 

The town went silent.

Those who knew what had happened said nothing.

One night, shortly after the charges, a mob of men and women, fired by anger, made its way to his home. He was not there, his wife, a really pretty woman, was there. She opened the door to them. She sobbed. She didn't know. How could she have known. She was so sorry, but she didn't know.

I never knew what happened. I never knew if it went to court.

I just never found out.

But none of that mattered.

I'd failed another kid in my class. I didn't know that the teacher was a sexual abuser, but I did know that he used his attentions and his affections to torture a fellow student in class in front of all of us. I know the teacher counted on his power to keep us silent.

And, I did keep silent.

But it wasn't the teacher's power that silenced me.

It was my fear that my voice didn't matter and wouldn't help.

I was wrong then, and I would be wrong now should I ever think the same thing again. 

I had wanted to say to him that I saw what I saw and that my silence didn't negate his experience or make it less real. I wanted to say that because I know, deeply, personally know, that silence is an invalidator. 

He'll never know how deeply my regret runs.

Or what I have done over the course of my life to make amends.

I left it too late.

Friday, March 31, 2017


I remember, years ago, when I was called to be on a panel discussing Special Olympics. It was to be a sports panel and the question being debated boiled down to: "Special Olympics, it's cute but is it sport?" This was to be on the CBC on an early Sunday morning. I agreed to be on the panel only if they also invited a Special Olympian. At first they said 'no' and therefore I said 'no' and I thought that was that. But they thought about it and called me back, they had invited a Special Olympics Gold Medallist to appear on the show. He and I sat on one side, the sports broadcasters on the other side and, well in all modesty, we obliterated their arguments.

Why did I insist on a Special Olympian to be on the show with me? Was it to amplify the voice of people with disabilities? Was it to ensure that those who participate were those that spoke? Yeah, yeah, it was all those things but, primarily, I knew that we'd win. Who can look in the face of a gold medallist and say that their accomplishment, and years of training, were meaningless? Who can listen to a sportsperson speak passionately about their love of sport and then say, "Sorry, we don't consider you a real athlete." Speaking truth to power" is only possible if the truth teller has an authentic voice - anything else is "Speaking opinion to power."

April 2nd is World Autism Awareness Day and this morning on television, as I was answering emails, I heard that there would be a discussion on the local news about the day and about Autism. After the commercial the host introduced some doctor from some hospital that specializes in serving people with autism and then a parent of a person with autism. And that, dear readers, was it. Lots of room on the couch but not an Autistic person to be found.

The doctor talked about research and the importance of research. The mom talked through the 'devastation of diagnosis' to the ultimate joy in parenting her child. The host, in the most patronizing voice ever, pronounced autistic people to be human. Well, thank heavens for that. But as always the tone was about his granting humanity rather than humanity being an automatic part of what it is to be autistic.

The host is the host and the host does what hosts do. But I am disturbed than neither the parent or the professional thought to insist that someone with autism be there to speak their truth from their point of view, it's much different to be devastated by a child's diagnosis than to experience your parent's devastation at your diagnosis.

And, yes, of course, I'll be contacting the station and protesting their coverage what turned out to be Autism As Professionals and Parents Experience It Day.

Thursday, March 30, 2017

The Right to Choose And How Far Does It Go: Words

Warning, I'm going to quote a conversation that I got pulled into with two people with intellectual disabilities. A boyfriend and a girlfriend were discussing who they were, not to each other, but to the world. I'm going to use the words they used as risk of offending every reader. But to be true to the story and to respect the language they chose to use, I am going to risk that.)

It begins:

I am sitting waiting for an event to begin.

They are a few feet away from me.

"I'm not retarded," he says.

"Yes you are and so am I," she says.

"It's a bad word," he says.

"But that's what we are, retarded, and it's not bad." she says.

"I don't like that word," he says, "people shouldn't use it."

"When I got called 'retard' at school, I didn't like it. But that's because it was a name and they were trying to hurt me. At home it didn't hurt to be retarded," she explained.

"The word is a wrong word, and I'm not that," he says with finality.

"Dave," she calls to me, "am I retarded?"

I roll over. I tell her that "retarded" is an old word that we don't use any more because it was and is used mostly to hurt people. I say that the word I use now, for myself and for people like her, who I serve, is "disabled."

"But I'm not in a wheelchair," she protested.

"There are all kinds of ways to be disabled," I say.

She sets her shoulders, "Well, I'm retarded. I don't care what you or anyone thinks about that."

He says that he prefers disabled.

They agree that he can call himself whatever he wants and she can call herself whatever she wants. That was the easiest part of the conversation. She then asked me if I would call her 'retarded' if she asked me.

I told her I had to think about it.

So, what should I do?

Besides hope that she doesn't ask me to because that's where I'm sitting right now.

Wednesday, March 29, 2017

Here, Now

"I can do it myself, mom," he said.

"Oh, I don't mind," she said, picking up his tray and taking it over to empty it's contents in the trash and then stacking it where trays are left for pick up.

I don't know if she saw his face, I doubt it, because people who think they are being helpful don't often look. He was deflated.

He was probably in his late forties, she was about my age.

He was born into a time of low expectations, she gave birth in a time where disability and shame were co-mingled. But they are here, now, and he wants to live, here, now. He must have noticed the young teen with Down Syndrome, like himself, working stocking drinks into the cooler. He must see other young people with intellectual disabilities out on their own, taking buses, going shopping, or to the movies with friends. He must see that.

I say that because he tried to assert himself, to do something for himself rather than have something done for him. Coming from the land of low expectations meant that he'd be trapped by helpers for his whole life, he would have been denied the freedom to try, the freedom to fail and the freedom to learn. He wants to move, into here, into now.

The young teen with Down Syndrome comes over to his table, seeing that the tray were removed, and wiped it down.

They spoke briefly.

I couldn't hear what they said.

But I saw the older man reach up and pat the shoulder of the teen, a congratulatory pat. I saw the young teen, beam a smile at the older man in response.

His mom returned, "There that's done," she said.

He didn't thank her.

Tuesday, March 28, 2017

What No Means

She might have been twelve, maybe thirteen, certainly old enough to know her own mind and draw her own boundaries. She was with her father and two younger brothers. I was in a long lineup waiting to pay and they were, on my right, in the bakery section of the store. They had stopped because the father had run into a cousin, I know this because it was fairly loudly stated upon their meeting, and the two men were chatting.

Then father turns to his kids and says, "Come over her and give you cousin a hug!" The two boys complied each quickly and briefly hugging their much older cousin. The girl just stood where she was and gave a shy wave but did not come over. Her father, embarrassed by her behaviour, made it clear by the tone of his voice when he reissued the command, "Come and hug your cousin!!"

Again, she didn't.

Mother joins the party, sees her husband's cousin and embraces him in a big warm hug. They kiss, both cheeks and then embrace again. Husband speaks to wife, in a language I don't know, indicating their daughter. Mom addresses her daughter and tells her to come and give a hug, and stop behaving so badly.

Daughter, again, waves, but doesn't move.

Mother goes over and dresses down her daughter. I don't know what she was saying but she was saying it passionately. Daughter is crying now. Mother slaps her on the back of her head as the daughter moves over to give her cousin a hug.

Cousin gives her a quick hug and says, "That wasn't so bad was it?"

Um ... yes sir, it was.

You could have stopped this at any time. You could have just waved back and let it go. You could have done something.

Hugging a crying child, whose tears are because they are being forced to hug you, is unthinkable.

Forcing your child, who is establishing boundaries and saying 'no' to a physical interaction that they don't want, is unthinkable.

It may be unthinkable.

But it happens all the time.

We all say 'no means no' but it most often doesn't, does it.

Most often, 'no means force'.

And that's got to stop.

Sunday, March 26, 2017

I AM ...

I am extraordinary!

Let me tell you how I know:

Yesterday I used an elevator and upon entry saw a bright pink post-it-note stuck to the back wall. It was small but its colour drew attention. I typically back into elevators but decided to go straight in because I was curious to read what was on the note. I pushed forward, made sure the door could close behind me, that my wheelchair bag wasn't blocking it, and then leaned forward to read the message.

"You are extraordinary!"

There was something so bold about the colour of the paper and the way the note had been printed, by a very sure hand, and the exuberance of the exclamation mark, that made me smile. Weirdly, for someone made uncomfortable by compliments, the message slipped by all my defenses and landed solidly right smack in the middle of my heart. It was an unexpected affirmation from someone unknown to me, left for the sole purpose of making someone's world a little brighter. And, for me, it worked.

The strangest thing though was that when I used the elevator again, hours later, it was still there, in exactly the same spot. No one had ripped it down, no one had written another message over it, no one ... it was put up by someone who wanted the world made brighter and left there by everyone else who either needed it or recognized that it was needed.

I don't know who wrote it and stuck it up.

But, I think I like them.

Small things matter, we know that, but actually getting the idea and carrying out the idea are different things, aren't they.

Doing Damns the Darkness.

And someone did that for me.

Saturday, March 25, 2017

Tell Me I Will

The little wheelchair symbol had worn off the centre of the table, granted, but as it's the only one of two tables, amongst over a hundred, you'd imagine that it would be easy to notice that two chairs are missing. But maybe I just know what that means because that's the kind of table that I need to sit at. There she sat, completely unaware of me lingering about waiting for a revelation to strike while she tapped away on her phone while eating her lunch.

We ordered our food and waited as it was being prepared. My hopes that she would be a speedy eater were low to begin with, she looked like someone who chewed. The food came but she hadn't left. So I screwed up my gumption and headed over to ask her to move. There were lots of other tables available but I still hated asking her. She responded with a quick apology and a quick move.

But why ...

... do I feel that she gave me something that I need to be grateful to her for?

... do I feel that I intruded into her lunch and was a bother to her?

... do I feel that I do not have as much right to space that is designated for me and those like me as she does for her and people like her.

... do I feel like my 'ask' could have been acceptably turned down?

Being disabled, for me, is sometimes just too complex and I have yet to come to terms with my right to space and my right for appropriate accommodation And it's been over ten years!

Will I ever get it?

Friday, March 24, 2017

Good Old Helpful Me

Wallets are a big deal to me. I take a long time to pick out a wallet. I am very specific in what I want from it, and, to me, it's the most private thing that I own. In fact one of the biggest fights that Joe and I had in the nearly 50 years we've been together was over my wallet. He did something quite innocent, he knew I had money in my wallet, and he needed the extra cash, so we went and got it. Now, we take all our cash from the same pot. We both put in, we both take out. The cash was not the issue. The issue was that the wallet is mine, don't go in my wallet without my permission, and I'd rather get something out of my wallet than have you take it out for yourself.

Now, let's be clear, I'm not hiding anything in my wallet that I don't want Joe to see. I do not have identification papers for the secret superhero that I become, "Phat Tire: He's so mean he'd roll over Beethoven!" It's nothing like that.my wallet just has wallet stuff in it, but the thing is, it's mine and it's only mine.

So, wallets are a big deal to me.

Yesterday I was in the line up behind a man with both an intellectual disability and cerebral palsy. He walked with a walker, his speech was slow but clear, and he was chatting with the clerk. When I joined the line, no one else had been standing there, they sped up the purchasing process. He got out his wallet and pulled out some bills and then opened the small change pocket in his wallet to get out some coin. It was at this point that the clerk leaned over and began to reach into that same small pocket to help him get the change out more quickly. I saw his face.

I saw his face.

He didn't like it.

I got it.

I'd hate it.

A wallet is private space.

I said to him, "You just need to tell her." He shook his head, clearly embarrassed at being caught being angry at someone being nice. "No," he said to me, "it's alright."

"Okay," I said, "it's none of my business, but me, I'd speak up."

You understand that the clerk stopped what she was doing and was listening to us. She turned to him and said, "Speak up about what, tell me what?" His face went red. He was trapped.

And I felt the immediate asshat. I had no right to jump in and try to help.I was doing exactly what she was doing, except she was reaching into his private wallet, I was reaching into his private thoughts. That need to grab the handles of my wheelchair, that intrusion that I don't like to the point of hating it - well there I was, the handles on the back of his disability gave me a permission that wasn't real.

"I don't like it when you reach into my wallet. I can get the change myself." He said it without looking at her and with a few angry glances towards me. As big as I am I felt very small.

"OH! OH! OH!" she said, "I was just trying to help."

"I know, but I don't like it."

"Why didn't you say something before?"

"It's hard for me," he said, "I know that people are just being nice."

It will surprise you but I kept my mouth shut and my opinion on that did not cross my lips.

"You should tell people what you want and what you don't want," she said, "because now I feel bad."

He was now getting upset. He didn't want to upset her or for her to feel bad.

I did this. I created this mess.

They came to resolution. She wouldn't help him any more with the change and he would tell her when or if he needed help.

He left and I approached the counter. She thanked me for my intervention.

He didn't.

That's an important distinction.

Wednesday, March 22, 2017

Resenting The Effort

Yesterday was a really hard day for me. I felt chewed up. I felt spit out. These were feelings that were really hard to shake. The fact that I know that we all have bad days doesn't help. There are moments, which are universal, but when experienced feel very singular. And that was it for me. Couldn't shake it. Didn't have the energy. Didn't have the ability. So, I just let it flow over me, knowing that even after the worst fart, the air clears.

In all this, I had to go see my doctor, nothing serious, just routine. I didn't feel like going down to meet with him, I just wanted to curl up around a cup of tea and a book that would take me far away. But, I'd waited for this appointment and I wasn't going to miss it.

Coming south on Yonge there is a patch of construction that has pedestrians walk a few feet along the street and then step back up on the curb. They have made an attempt at a ramp for wheelchair users, but it's to show willing rather than to be useful. No way I can get back up to the sidewalk on that 'ramp.' So I scoot along to the intersection and then dart back on the sidewalk. This is where I turn to go to the doctor's office so, I head that way.

There is a woman standing, just off to the side and back near the building. She is small. She is scared. She clearly has mental health struggles. Seeing me frightens her. She points and me and begins to shoo me away. "Get way, you, get away, you, get away, you don't belong here, you, you don't belong here," her voice, and the agitation with which she speaks tell me that whatever's going on with her is much more significant than what's going on with me.

I know that.

Being honest here. I didn't care. I had to fight down annoyance. I had to fight down my own feelings of worthlessness and the anger that comes with that feeling. I wanted to choose words to slam back at her. They were there in my mind.

I resented that I had to be the understanding one. I WANTED UNDERSTANDING.

I resented that I had to be the giving one. I WANTED TO RECEIVE, NOT GIVE.

I resented that I had to be the one making space. I WANTED SPACE TO SCREAM.


I rolled by. I said nothing. I let her wave her finger at me. I let her tell me I didn't belong in her world. I let it happen. When I was far enough way, I heard her voice change, I turned. She was pointing at someone else. I saw their face. How hard it was.

I knew mine had been hard too.

But I didn't, like the man behind me, tell her to shut up.

I don't know if that's much of a victory, but to me, it felt like one.

Tuesday, March 21, 2017

The Promposal and World Down Syndrome Day

This morning I went to Google, typed in "Down Syndrome News" and waited the nanosecond it took for the search engine to present me with the results. My goal was to see, on World Down Syndrome Day, what I would find. I do things like this with expectations, here I expected to find an article on World Down Syndrome Day, but I didn't. Instead I found a story about a handsome 18 year old young man, described as a "kind hearted boy", who asked a young woman with Down Syndrome to the prom. There's a whack of pictures of him asking her and even a video to watch.

No question she was excited, and no question that it meant a lot to her. No question. The young man stated that, "They deserve everything that everyone else does too." 

Naturally, everyone is quite ga-ga about this event.

The comments are interesting.

They are all about him.

Not about her.

She was the backdrop to the story.

She was the canvas upon which a scene was painted.

She was the mechanism used to tell a story about a boy and a stereotype.

In none of the stories, that I read, was she interviewed.

This is World Down Syndrome Day and I don't, and won't, spend it bashing 'good intentions' of 'kind hearted' boys. But I will state that, as we move forward, I want to see stories of people with Down Syndrome who are more than the means of furthering stereotypes. Good heavens, why does she need him to ask her to the prom, isn't it slightly possible that she might have a date already? I want to hear the voices of people with Down Syndrome, they are amazing voices and need only the microphone.

The microphone.

A spot on centre stage.

And a world that will look and listen and learn.

That's what I want on World Down Syndrome Day.

Monday, March 20, 2017

The Wrestling Match

When the girls arrived on the weekend we asked them if they'd like to be part of the Saint Patrick's Day Parade that would be happening on Sunday. There wasn't even a breath of hesitation. "YES!!" And then the talk was immediately of costumes and we added into the plans a trip to the dollar store to find stuff for everyone to wear.

As we browsed around their excitement began to grow. They love parades. Because my home agency, Vita Community Living Services, participates in both the St. Patrick's Day Parade and the Pride Parade, they've been in a lot of parades. This would be Ruby's second time in the Pat's Parade and Sadie's first, they are more Pride girls. I watched them going through the dollar store stuff and weighing out what they'd like to wear in the parade with pleasure but also with a tightening knot in my stomach.

Putting myself on display, for people to take pictures of, for people to really see, is difficult. The inherent permission that you give people to look right at you, to take pictures of you, when you participate in a parade is something that I'm wildly uncomfortable with.

I have wrestled shame to the ground several times in my life. But, shame is a worthy opponent and always manages to get up again. The voices of shame appear in my mind: they are going to laugh at you, they are going to be disgusted by you, they are going to mock you, they are going to hurt you, hurt you, hurt you. As the parade grows closer, the voices get louder, meaner, more controlling. They take over my appetite, they take over my ability to think clearly, they take away my ability to hear others and be fully with people. 

Now as we are walking towards the parade gathering area to join with others in Vita, they are screaming in my ears. But, Ruby and Sadie are bouncing with excitement. At one point, Sadie, so excited by being in the parade shouts to Joe and I, "I LOVE THIS!" At another point, Ruby runs over and gives us each a hug. They are happy.

They are happy to be there.

They are happy to meet all the staff and members of Vita.

They are happy to be part of the group.

Then, when the parade starts, they are dancing! They do jigs and twirl each other around. And I notice, that I've been so involved with the 'hellos' to everyone at Vita and watching the kids get ready to hit the parade route, that I hadn't noticed. The voices had given up.

I was here.

I would march.

I would publicly be fat, publicly be disabled, I would be purposefully on display.

But shame had been silenced, and, as always happens when shame is silenced, a little voice, the one belonging to pride speaks up.

"I belong."

"I have a right to be here."

"I am a prideful fat and disabled man."

"Go ahead."