One

Yesterday, at the gym. (Now there is a statement that, at one time, I could not imagine myself saying.) Another disabled guy rolled in and scooted up the ramp. He stopped and introduced himself and I said that I was glad  not to be the only wheelchair user there. He wholeheartedly agreed. I was working on one machine and he was working on another nearby. We began to chat.

As we both talked about why we were working out, we discussed primarily maintaining or improving the strength we have as disabled people to keep ourselves mobile and safe. Falling down and getting back up being a big one for him and rolling long distances without assistance being big for me. We further identified issues that were peculiar to each of us and our needs as disabled people.

The folks who are there running the gym are quick to give assistance and advice. They are helpful and friendly and surprisingly quite kind. (These were not things I was expecting.) I appreciate what they do. But this chat was different, it was nice to talk to someone else with a similar mobility disability, it was nice to talk about muscle groups that needed working and the importance of doing everything we can to maintain what we have.

His disability is different than mine, of course because all disability is idiosyncratic, and he can transfer onto the machines. It was cool to see the scooter sitting beside the machine, empty, waiting, like a service vehicle, for it's master's return. It was cool.

While we were there a couple came in, maybe in their 40's, she used a walker, they were there to tour the gym to see if it might work for them. The look of real happiness on her face as she stood at the top of the ramp and saw two other disabled people working out amongst all the rest, the young, the strong, the fit. I don't know if she thought that this was integration or inclusion or whatever, but I know she saw something that mattered, a place where she wouldn't be the only one.

Back Down

The ramp up and in to the grocery store where we shop is a bit difficult to manage. It's rough where the end of the ramp meets the roadway. My solution is to back up, using the big tires to go over those bumps is much easier for me. It garners stares and unsolicited offers of help, but for all that, it gets the job done. We were there yesterday with Ruby and Sadie. We had a short shopping list and managed to get around, breaking up for a 'scavenger hunt' for a few minutes, and then, we were out.

The space between the cash desk and the windows is uncomfortably small. I can't wait at the end while groceries are packed because I feel that I'm in the way. So as I usually do, I head out to the lobby and wait there for the rest to join me. When they do, there is chatter, lots of chatter, I've been apart from the group for less than five minutes but there's lots to say.

I leave with them. I am surrounded by two kids and a husband. I turn the chair around and this unexpected turn catches the attention of a young woman outside the building. She looks at me with a bit of confusion. Joe and the kids are with me but behind me now, closely behind. I am saying, "make sure that I get down safely, it's a bit steep, and watch for cars I don't want to be smushed by someone racing by in the parking lot.

I don't notice that the young woman is approaching me with real fear in her eyes. I realize that she thinks I'm talking to her. That I just randomly ordered her to assist me. I look at her and said, "I'm not talking to you, I'm talking to the people here I am with." The relief on her face was immediately evident. She rushed back to where she had been standing.

Part of a group, but seen as solitary.

Part of a family, but seen as alone.

I am so astonishingly visible yet those who are with me are inconceivably invisible. Because disabled people live desperately lonely lives.

And some do.

But loneliness isn't the 'hallmark' of disability.

Shocking news:

Prepare yourselves:

Non disabled people are often isolated too.

But this inability that so many people have in seeing me as a part of a social unit instead of apart from a social unit always worries me. It feeds a fear of disability and being disabled that goes to the heart of the prejudice against us.

But this time, because she looked so tense and so shocked to be ordered into assistance and since the transition of her face from 'oh my God' to 'oh thank God' was so quick to be comic. I thought it was funny.

The Playground

I now have medical confirmation that by working out regularly I am increasing my strength and overall fitness level. I can't tell you how good that felt. You know what that means ...

It means that I'm still stuck at the idea that the opinions of others trump what I already know to be facts.

It means the approval of others trump the positive self talk that I do after finishing a routine or accomplishing a new goal.

It means that I'm still a five year old looking desperately for the approval of others.

I could say, and it wouldn't be true, that what I got was the 'validation' of what I already knew to be true, but I won't because it was the APPROVAL that really mattered to me.

I know that I can push myself further than when I first started. It was about 4 months in that I reduced the amount of support I needed to get around an airport, it was about 2 months after that that I stopped needing any at all. Notice the accomplishment? Check Self validation done? Check. And. Check.

I know that I've gone from using insulin to not using insulin and that I've been insulin free for well over a year. I know that all of my other drugs for diabetes have been lowered and, then, some eliminated all together. Did I make note of this? Check. Did I give myself approval. Check. And. Double Check.

I know that I can do things that I couldn't before. I can pick stuff up off the floor from a standing position if I have something to brace myself and that I can push my wheelchair foot pads from up to down myself. Did I pay attention to this? Check. And. Check Again.

These are only a few of the indicators that the elimination of sugar and the inclusion of exercise into my life has done. I know that I feel differently in my body and more powerful in my life. I KNOW IT.

But, I now have a medical opinion that I'm fitter and stronger. And NOW it feels real.

I wonder if I'm destined to wander in the empty playground of first grade looking for someone else to point the way and someone else to pat my back. I hope not.

I'm 64.

Can I grow up now?

(Not) Alone

I have only one voice

But I'm not just one voice

Yet

When I speak out

I feel alone

When I stand firm

I feel alone

When I refuse to cede space

I feel alone

I am only one person

But I'm not just one person

Yet

When I take action

I feel alone

When I risk confrontation

I feel alone

When I refuse to back down

I feel alone

When I declare myself human

I feel alone

And then

Suddenly

I don't

And then

Suddenly

I feel my community

I feel the history of our defiance

I feel the strength of our numbers

One

By

One

Feeling Alone

And never actually

Being

Alone

A Very Short Story

Her daughter said to her, "You go ahead and get a table, I've got to take a quick trip to the washroom." We heard this because it was said just beside us. The mother being addressed waved her daughter off and then began a very slow walk into the food court. She wore slip on bedroom slippers, she used a walker, and her hair looked like it was just growing back in. She walked slowly and carefully, she smiled at me and said, "Nothing keeps us down and out does it?" I laughed and said, "No, nothing does." She continued on her way.

A couple of young boys (men) of maybe 17 or 18 years of age walked by her and took the table next to her. When they sat, they were looking at her and laughing, the one seated nearest to me said, "Yeah, go to the mall and pick up hot chicks." That broke the other into hysterics.

I turned and said, stonily, "Yeah, go the the mall and pick up an asshole."

I'll let you imagine what happened next.

A Quiz - What do You Think?

Yesterday, I was watching a television program, one that I really love, and was enjoying the fact that they finally had a character with a disability. Now I didn't look up to see if the actor was also disabled, sometimes I just want to be an uninformed member of the public, but I did notice that he certainly knew his way around a wheelchair, using at different times 2 of the 3 preferred pushing strokes that wheelchair users typically use. So back to the program.

He was introduced in the second episode. Killed in the third as victim number two of a serial killer. I was so mightily disappointed, I liked the character and how badass, yet complex, he was. So we watched as the cops went through his apartment looking for hints and clues. Weirdly, Joe and I too became detectives.

We wanted to see if the set designers got it right. Could this actually have been the apartment of a wheelchair user? The first shot of the bathroom was too quick to make any kind of assessment. There did seem to be enough room for a chair to get around but then, the cops went into the bathroom. One with absolutely no adaptation for a wheelchair user. Not a bar in sight, no adaptions to the toilet at all, no possibility of shaving at the sink, the tub had a impossibly high step in with no grab bars to steady oneself.

Shit.

The show completely missed an opportunity to show what an adaptive apartment is, what it looks like. At no time did the cops say anything about wheelchair spaces or tire marking, or anything related to the wheelchair. The spoke of him as a character, but if you read the dialogue you'd never know that he was in a chair. Some see this as progress, I see this as erasure. Of course cops would be talking about his disability, his vulnerability to an attack like the one that killed him, the patterns of his movements and what his level of mobility was - it would matter to determine where he might have been before the murder and where he was planning to go that night.

Shit.

I'm glad that there was a character on the show, I wish he could have been around a little longer and I wish his life had been better represented.

Is it wrong that I'm still a bit grateful to have seen a character on a show that I like that I could identify a little bit with, even if they made a lot of mistakes about living with a disability?

Inconvenient Lives

Saturday Morning:

We were directly behind them in line. It was busy in the supermarket so the line ups were long and the waits seemed longer. At first we thought he was on his own because he was standing with his cart, by himself, staring into his phone. But about five minutes later his wife arrived. She used a walker and in the walker's basket she had tucked away some other groceries which she put into the cart, he didn't look up when she arrived, didn't acknowledge her in any way. After she was done, she turned her walker and sat down. She was clearly tired.

When the line moved, he quickly moved the cart ahead. We had to wait as she got up, steadied herself at the walker and then moved up to join her husband. He looked at us with a pained expression, then looked to her, and back to us, and rolled his eyes. Then, he went back to his phone. He had still not spoken to her. I was shocked that he rolled his eyes about her to me. I'm sitting in a damn wheelchair and somehow he wanted me to share in his tiresome gift of patience for his wife's slow movements.

The was a kerfuffle at the counter and the wait drew on. She, seated again in her walker, attempted to talk to him, to engage him in conversation. He, still looking at his phone, put his finger up to indicate, "just a minute" but really it meant "shut up and leave me alone." She was mortified and humiliated by his behaviour. She knew we had seen and tried desperately not to look at us. She started to mumble under her breath cursing her "G-d damned disability."

He did finally speak to her, only to tell her that she was in our way, he spoke sharply. I sharply responded that she wasn't in our way at all. He looked at me and then her and then smiled and shook his head.

Sunday Morning:

I'd seen her before and she has always been friendly. When I arrived she was doing what she was doing on her own, listening to music through ear pods. I noticed another fellow there, about her age, which was also about my age. He too was doing what he was doing, plugged in to music. She then moved to another activity and he, when she walked by her, gave her a thumbs up and a smile. It's a place where people encourage people so that wasn't unusual.

A few minutes later, she was having trouble with the machine she wanted to use, and he got up and walked over to her, smiled and helped out. I couldn't hear what was said but they were both laughing. He was a handsome, and very fit, man, grey on the sides and a ready smile. She was a pretty, fat woman, freshly blond who also had a ready smile. They both, at different times, helped me out when it was needed.

During the time we shared space they went back and forth to each other, him encouraging her, she kissing him in thanks. It was lovely to see the interaction. Others in the area, were quite dismissive of her, her weight being a problem for them. They do that less with me because my disability makes me inspirational and that's the story they seem as a group to want to tell.

Thinking About It:

Two husbands.

Both with wives who have differences.

I'll bet you feel very differently about the two men. I'll bet you have made judgments about how they treated their wives, I know I did. Let's look at what they did.

One did all he could to communicate the burden his wife was, the fact that he saw her as barely human was also clearly expressed. He is educating the public, or rather confirming the bias, about disabled people as spouses. We destroy the lives of those around us, we suck the joy out of the air, we just selfishly refuse to die to remove our inconvenient selves.

The other, with no effort at all, because it takes much more effort to communicate displeasure than pleasure, let everyone know that he was proud of, and that he loved his wife. Fat or no, other's opinions or no, he loved his wife. He too was educating the public, or rather he challenged stereotypes, and with a simple loving gesture he put paid to ignorance.

STOP!!

It is so easy to see how the men behaved and to recognize how one hurt while the other helped. It's easy. But do you apply the same standards to yourself?

What if these people were Direct Support Professionals out with someone they say that they serve. One on a cell phone, one burdened by tasks they are paid for, one letting people know, that even when salaried, disabled people are nearly not worth the trouble. The other attentive and helpful and encouraging and communicating respect and care, with every action communicating that difference is just difference and that difference doesn't preclude respect.

I wonder if  DSP's realize sometime that every time they go out in support of someone with a disability they are educating the public about the worth and value of the people they serve. An 'outing' is never simply an 'outing' ... it's much more than that, it's where you begin to fulfil the mission of every agency who serves people with disabilities, that of creating a world where people with disabilities are valued and respected.

Every time you go out, you change the world, for better or worse, you change the world.

Yes.

It's that big.

Wanna Be My Friend?

I need to figure out how to be gayer.

It's been years and years and years since I've been out of the closet. Even so I keep getting 'friend' requests from young and very buxom women who urge me, in no uncertain terms, to admire their beauty and hint at the availability of much closer contact.

To say that I'm spectacularly not interested is a massive understatement. Kinsey developed a 6 point scale between exclusively heterosexual and fabulously 'to the last drop' homosexual, and on that scale I'm all musicals, muscles and moisturisers. People often say that I don't look gay, and I always think, well you don't look ignorant. Let me assure you I look at the world through a gay lens, and my world is pretty.

Enough of that.

From the outset these 'friend invitations' bothered me. The girls are all so young, well, young to a 64 year old man. They, none of them, look fragile, but I think that may be hidden behind the makeup and the costumes they wear to entice males to click the button connecting them. I wonder if they worry about who might be clicking 'friend' I hope they are worried about who is clicking 'friend'.

They all look so young.

I never accept the friend request, I always indicate that the request was 'spam' when asked by Facebook, and I worry that I might be making moral judgements and that I should just leave it at a declined friendship. Yikes, why is my natural reaction to think about the ramifications of what I'm doing. But, whatever, I consider the requests spam and wish I wouldn't get any more.

Not because they mistake me for a potential much more than friend.

But because they are so freaking young.

Some of them look like they've just left the playground and now are on very dangerous ground. If there are trolls on the Internet there are the truly dangerous in the real world.

Do any of the rest of you get these and what do you do in response to those requests?

A New Everest

A little over a year ago I wrote a blog post about my attempt to push up a really long and very steep ramp. As I described then, the ramp is so long that they built a flat section about 2/3 the way up so you can rest before attempting the last part. The last part changes pitch a bit and is considerably steeper that the bottom part. When I wrote about it, I wrote about making it part the way up. I wrote that I knew one day I'd have the strength to make it all the way. That trying and nearly making it wasn't failing, it was trying and nearly making it.

It's just over a year later and I've tried the ramp a few times over the year, each time just about making it, each time needing help to finish. Last time I tried we were with Ruby and Sadie and I asked them to stand at about where they thought I'd have to stop. Sadie, as it turned out, had little faith in my strength and I passed her marking, Ruby set my attempt as ending just a little above the flat rest space and I passed it too but not by much. Both girls were thrilled that I got as far as I did. They too saw it as a successful attempt.

Yesterday, after work, Joe and I were back. I started up while Joe parked the car and he was back about the time I hit the rest spot. I told him that I thought that today was the day and I asked him not to help even if I'm clearly struggling. I assured him I would ask.

So.

I began.

Making the rest spot was tough pushing, like it always is, but it's pushing knowing I can do it. As I began the last part, I didn't have that faith in myself. I didn't think I could do it. It's really steep, I'm really heavy, and I'm tired out from the first part. But I inched closer and closer to the top. People turned to look because of the sounds I was making as I part pushed, part pulled my way up. I passed my previous high point and almost decided to stop, but I didn't. I cleared the top. For the first time. It took a year for me to get the strength to do this but I have the strength.

I felt a bit nauseous from the strain and had to stop for a second, but it went away quickly and we continued on. This morning my shoulders are sore, but it's a weird kind of sore, it's like my body saying, RAH. That probably makes no sense at all.

RAH (ouch) for the prior attempts and RAH (ouch) for making the top.

I need a new Everest.

A Honking Big Piece of Pie

A research study was recently published that showed that one quarter of non-disabled people avoided conversational contact with people with disabilities if they could. One quarter! A quarter of a pie is a big, freaking piece of pie, it's half of half. Now when asked they said that they were 'afraid of offending' us. Really? You avoid us for our benefit. You think that targeting and then isolating people with disabilities is something you do to protect us from you? Really? You're that bad a person that you are removing you from any possible social contact with one of 'those' people. Gosh, how people can mask their bigotry behind the concept of kindness. 

"Really, I'm doing them a favour!"

Let's see how are the rules of conversation different than they are with everyone else.

1) Don't talk about our bodies.

2) Don't talk to us in patronizing ways.

Hmmm. There are other rules but they are the fine tuning rules that you learn from each individual, disabled or not, as to what they find acceptable.

Those are the don'ts, how about the dos?

1) Acknowledge us in the same way as you acknowledge others.

2) Accept that we exist and ensure there is space for us in line and in ordinary social banter.

Gosh, not a long list either.

Don't tell me that your active avoidance is about this shit. I am not sure if the researchers believed you, thought I think they did, but I don't.

It's not our fault that you feel uncomfortable around people with disabilities. We didn't teach you to see us as less or as inhumanly different or as pariahs to be avoided. Don't know who did but it wasn't us. So don't blame your discomfort on us and don't pretend that visually and socially euthanizing us is for our benefit.

We exist.

We are here.

Grow a back bone.

Say, "Excuse me," if you bump into us.

Tell us how hot it is this summer when we're on an elevator with you.

Ask us if we liked the movie on the way out of seeing the same picture.

How hard is that?

It isn't.

Unless bigotry, not kindness, stops you.

Chairless Tongue

"You don't sound disabled," the voice on the other end of the phone said, suspiciously, "are you sure you need these accommodations?"

I don't sound disabled.

That's what I was told.

And what exactly does "disabled" sound like? I don't know for certain but I know that whatever it sounds like, it doesn't sound like me.

Do people think when they speak about disability? Do they realize how offensive their words are? I wonder and I wonder more if it matters to them at all.

I was in a position of needing accommodation. I didn't blow up on the phone because I needed what I needed and I didn't want to piss off the person who could give it to me. She was the gate keeper to my successful accommodation so I simply let it go.

Sorry.

I don't fight every fight.

I capitulate when I am in the powerless position that need places me.

Do people who are employed in disability services begin to get a sense of the power they hold in their hands? Does it corrupt them? Does it make them mean? Do they begin to believe that the resources that they manage, which weren't created by them and weren't paid for by them, are theirs anyway? Do they think they can say whatever they want and be suspicious of every person requesting service?

I didn't "sound disabled" so I must have been scamming, I must have been trying to access what isn't rightfully mine. That's what we do us fake disabled people who don't even both to sound disabled.

Well hear this: Disabled doesn't have a sound you fartwit!

The Door

I was pushing down the hallway of the hotel in which we are staying. I had pushed through a doorway that separates one part of the hotel from another and was now on my way to the lobby. Perfectly normal start to my work day here in Boston. Now, please notice that I had pushed through the doorway, by myself, without assistance, as this needs to be clear in order for this story to make any sense at all.

A woman and her small boy were waiting at the elevator, which happens to be on the other side of the door I had gone through. She would have been in her mid to late 20's. She and her boy had been watching me come down the hallway while I prayed the elevator would come and take away the audience to my progression towards the lobby. I passed them, she said to me, "You poor thing" and I slowed to look at her, it's first thing in the morning and I had no idea what about me resulted in her comment. "They make the doors too narrow for wheelchairs," she said. I said, "I pushed through the door with no problem." She nodded, the door opened for the elevator, and got on.

I'm now starting my day with 'poor thing' ringing in my ears and it's going to take work to shush that up, push that aside and tamp down my annoyance. I'm starting my day.

Words have consequences.

By the time I got to work it had become a funny story. That conversion from feeling patronized and having reality distorted by prejudice ... I was through the door ... into an anecdote involves energy that could have been used differently.

Like enjoying the ride to work.

The Glue

I've been troubled over the last couple of days over an incident that happened at a movie theatre. Joe and I had just purchased tickets to go see 'The Big Sick' and I was rolling away. I hadn't noticed in the line behind me that there were two staff and two people with intellectual disabilities immediately behind me. We'd arrived early and went immediately to the ticket counter, they must have arrived shortly after.

The first thing said, with me still not knowing anything about them, I hadn't seen them, was "We are a little bit late for the Spiderman movie." The ticket guy must have asked how many tickets were wanted and the same voice said, "Two individuals and two staff." Now I know that theatre is part of a program where staff get in free when supporting someone with a disability.

I shuddered at the way the young man spoke even though I'm damn sure he was trained to speak that way and that he worked for an agency proud of the fact that they don't use 'labels.' However, the way that the two people with disabilities going to the theatre were spoken about seemed to be in some kind of 'code' whose purpose seemed to be the masking of shame with words used as a difference denier. In short, it sounded horrible.

Honesty in speech always sound more respectable, listen to, "Two people with disabilities and two support providers." Doesn't that sound better? Doesn't that sound open and honest and proud. Now some of you are thinking he should have said, "Four tickets." Well, the problem is, there are ticket pricing differences based on the need of people with disabilities who have support professionals along with them. This makes going to the movies more accessible by cost.

What would have been amazing, though, would have been if the people with disabilities had spoken, "Two tickets for us and these are our support workers." That kind of leadership in the personal realm is surely our goal.

"Two individuals and two staff." It still bothers me. It demonstrates clearly the lack of power and the presence of privilege that exists in the relationship between those who receive service and those who say they serve. I don't think that young man who spoke should be judged by what he said, I'm sure that he was following policy and that he thought he was not labelling the people he supported.

Sometimes labels are smacked on someones forehead stuck on by the glue of what we do, not what we say. This is one of those times.

Anger

I see you see me.

You wash your hands, quickly, then pass me by. You act as if I'm not there. As if I won't know that it was you who made the mess. Who pissed all over the toilet seat in the accessible stall. As if I don't figure into your world, as if I am an inadequate consequence to your filthy behaviour.

But I wonder if you see me, seeing you.

And I know on entering what kind of person you are. Too lazy, or in your mind, too above, the action of lifting a toilet seat. No you leave your piss sprayed all over the seat, dripping wet, stinking of arrogance.

I saw you yesterday, in the mall, you walked by me as I pushed towards the one stall that would accommodate my chair and me. Your face became glued by my anger towards you to my memory of seeing that seat, the puddles of urine, and the damnable task of cleaning it up. I had no choice, no other stall to try. So I mopped up your piss.

Later I saw you, in the food court, with your girlfriend. I rolled by your table and stopped and stared at you. I didn't say a word. I saw her face confused, looking back and forth between you and me. I didn't move, just looked at you with contempt.

I wanted you to know that even as you value me so little, I value you less. I wanted you to know that your were beneath my contempt. Someone you see as being less than you, sees you as less than them.

I saw the change in your eyes as you wondered if I was right.

Let me tell you, I am.

Give the Kid a Moment

I was rolling towards the accessible toilet when a large group of children poured out of the gym. One of the kids was with a staff who, when seeing me indicated for me to pull over so they could pass. I clearly couldn't because I would have to pull into a steady stream of children, there was no room. I saw that the boy had an intellectual disability and that he was having trouble with the noise, the transition and the approach of the young staff who was really frustrated.

Frustration never helps.

Children with disabilities aren't being disabled to annoy you. They have a disability that requires you to surrender some of the emotions that, mixed together, create frustration. He was stuck. He didn't appear to need me to move anyway, that seemed to be the need of the staff ... get out of the way so we can get moving. He just looked at me, looked at the other kids and began to process. It will take him time to process. If I move he will have to start all over again.

I waited, patiently and quietly, a slight smile on my fact to communicate that there was no pressure. As the stream of kids began to dwindle, he stepped over, exaggeratedly, and then walked by me with the staff now in tow.

He needed time.

Disability sometimes requires extra time.

He didn't need  people constantly changing the problem.

I went about my business and he went about his.

Disability is our experience, it's one that needs your support, not your emotional reaction to using time, that you are paid for, to allow problem solving and decision making. Both of which the boy did.

Helping meant waiting. For her and me. And wow, that's hard for some people to do.

Difference ... Loved Away?

I was clicked in to read a blog written by a mother who made the claim that in her house, her children would never have to come out of the closet because she and her husband were never going to stuff them in one. In her house love would be love and that's the end of it. She wrote this in response to those videos that show kids coming out to parents who, alternately, either love them 'anyway' or throw them out of the house. They can be dramatic, these videos, and show what kids still go through.

While I am glad that the woman who wrote the article is trying to set up her relationship with her children such that they never have to come out, I think she's making a mistake. No, not in teaching her children that love is love and ensuring they understand that both parents will love their children unconditionally, of course that's never a mistake. The mistake is thinking that 'coming out' and the 'need to tell' is something that can be avoided by the work and intervention of parents. Like 'coming out' is something under parental control, not something that is owned by and necessary for the child. This concerns me.

I read so much about how parents who love their kids simply love their kids and because of that they've loved the difference away. That their child's sexuality or their child's disability or their child's mental health status are things that can be made to not matter, not exist in a way that is experienced, by their child. I applaud parents, I say again, who wish to communicate acceptance and love for their children, no matter what.

But the irony in saying "My child who is (or who has) will feel my love and know that they are loved," is a statement that only has meaning and is only being said because of the difference. It makes little to no sense to say it about a typical kid. There is a universal expectation that parents will love their kids, the universality only becomes in question when a difference exists.

Beyond that, there is nothing a parent can do to make the 'coming out' process, the 'identification' process less difficult for their child. It is what it is and what it is is often painful. Coming out is not an experience that is limited to LGBTQ+ kids, it may have been named by that community, but it isn't owned by it. Disabled kids have to come out to themselves as having a disability, they have to go through the process towards self acceptance and identification alone. This process, the identification with difference, the acceptance of one's own difference and the resultant pride in being different, always happens in the context of a social world with messages about what is good, and what is beauty, and what is normal. Parents can soften the blow, but the blow will come.

My concern, though, when reading of parents who love their kids anyway, and who wish to love the difference away ... sometimes don't seem to notice that difference can't be loved away and 'loving anyway' is still a modification of 'love freely given.'

Parents stories and parental experiences are vitally important. We need to hear them, we need to understand their journeys but we need to understand that these journeys are different from the journeys that their children have to make. There are roads we all walk on alone, there are experiences that will always be uniquely ours. The voices and stories of the children, loved anyway, resistantly different, still need to be told.

The idea that our child will never have to come out to you makes no sense at all. Your child, of whatever age, still has to tell. A child's voice still has to say the words. No matter how hard you work to communicate acceptance, you will still have to actually accept.

It's a moment.

Parents of kids who are LGBTQ+ are learning about accepting and honouring and being proud of their child are important steps in their personal relationship with their children.

Parents of kids with other differences, like disability, are still having problems with the idea that 'my kid is like every other kid' trumping 'my kids experiences the world differently because of his disability and I need to understand that difference and allow my child the time and space to understand and identify their difference and work towards pride in who they actually are.' But we're moving there, we're getting the message out. We're coming out as a people. We're discovering our own voices.

And our voice and our experience is important too.

It's different from the voice of parents, it tells different stories, equally important stories, and has it has a right to exist and to expect to be heard.

Our experiences belong only to us.

We experience you.

You experience us.

And there may be great differences that come from that encounter. Experiences that can teach us about each other and teach us how to better love each other.

There's nothing to fear but the need for growth.

27

27 names

1. Abdulmezhidov Adam Isaevich, born 27.5.1987
2. Abumuslimov Apti Hasanovic, born 02.06.1989, Shali, Street School, 16.
3. Abdulkerimov Side Ramzan Ramzanovich, born 25.03.1990, registered at the village of Kurchaloy, street Dohtukaeva 18.
4. Alimhanov Islam Aliev, born 6.7.1998
5. Abubakarov Adam Dzhabrailovich, born 05.05.1995
6. Bergan Ismail Shadidovich born 19.08.1998
7. Dasaev Adam Ilyasovich, DOB 16/06/1988, Shali.
8. Dzhabayev Zelimhan Hizirovich, born 12.18.1993
9. Ilyasov Adam Huseynovich, born 22.09.1997
10. Lugano Rizwan Saeed-Hamzatovich, DOB 13/09/1987, Shali.
11. Malikov Rizwan Agdanovich, born 01.06.1990
12. Musk ICYE Turpalovich, DOB 19/07/1988, registered at the village of Tsotsi-Yurt, New Street, 10.
13. Muskhanov Temirlan Ahmadovich, born 28.4.1986 Shali Chicherina Street, 2.
14. Ozdiev Usman Vahaevich, DOB 12/24/1989, registered at the town of Shali, Grozny street, 39.
15. Rashidov Doc Ibrahimovic, born 30.05.1995
16. Siriev Magomed Musaevich, born 23.02.1993
17. Soltahmanov Ismail Ezer-Aliyev, born 30.03.1994, registered at the village Mairtup street Nuradilova.
18. Suleymanov Magomed Arbievich, DOB 01/03/1987, Shali village Caucasus, 8, Apartment 4.
19. Tuchaev Ahmed Ramzanovich, born 23.02.1987, Shali, Street School, 30.
20. Habu Khamzat Slaudinovich 14.02. Born 1993
21. Khakimov Alvi Aslambekovich, 16.11. Born in 1992
22. Hamidov Shamil Ahmedovich, born 14.11.1986
23. Tsikmaev Sultanovich Ayoub, born 02.04.1984, the village Germenchuk, Youth Street.
24. Shapiev Muslim Isaevich, born 28.11.1989, registered at the town of Shali, the street Kutuzov, 12.
25. Eskarbiev Sayhan Vahamsoltovich, born 23.5.1992
26. Yusupov Sahab Marshak, born 19.1.1990
27. Yusupov Shamhan Shayhovich, DOB 17/06/1988, registered at the village of Kurchaloy, ul. Sovetskaya, 11.

The youngest: 18

The oldest: 33

Who are these people? They are the names, released in the newspaper Noyaya Gazeta, of young gay men who were arrested, detained, killed under the cover of darkness, and buried in hastily dug graves. 

Who killed these men? The Chechen government. 

We've just had Pride parades.

We've danced till dawn celebrating our victories.

While 18 year old boys were held captive, while governments declared war on love, while guns were being loaded.

What can I do? Well, do what I'm going to do. I'm going to write my local MP and I'm going to write the Minister of Foreign Affairs. While I'm at it, I'm going to jot a note to the Prime Minister.

I know it's not much.

But it isn't nothing.

And nothing is simply an unacceptable response.

The Gym

The gym that I'm thinking of joining, there's a phrase I never thought I'd say, has three pieces of accessible equipment. I went yesterday for a free trial day to see if the machines would work for me and if they'd be enough to keep me interested with a variety of exercises. One of the staff stayed near me to show me how to make the machines accessible, one by pulling the seat out and the other by unclipping it and sliding it aside, the other needed no modification.

I tried the first one which required me rolling up and onto it after the seat was taken away. I was able to get in and begin exercising. I did note the moment, my first time in a real gym, not a hotel gym, with equipment adapted for wheelchair users. I found myself, tiring out fairly quickly, but I set a goal for ten minutes on the machine and summoned up the energy to make it.

Then it was on to another machine. This one didn't have bells and whistles, no screen told me the calories burned or the distance gone, this one was just hard work. There again I set myself goals and met them. Admittedly the goals were low, but I'm just starting and I want to acclimatize myself to the machines and the routines.

The last machine had 5 different exercises you could do on it and I was instructed slowly and carefully on how to do each one. The instructor was very patient and answered my questions. She was interested as she listened to me talk about the mechanics of pushing a chair and which muscle groups were important to me, she answered what she could and stated that this was new for her too and what she didn't know now, she'd know next time.

After about an hour and ten minutes I left the gym and headed up for a run on the track. It's different pushing long distance on a track than in a mall, where I usually practice, because I don't have to constantly break for other people. There was a level of intensity that came with being on the track that I liked but wasn't prepared for. So I only did three laps but that was enough for the day.

I met with everyone downstairs as Joe and the kids were in the pool. Marissa, their mom, had agreed to be my gym buddy for the day and we compared notes on the gym. What struck me was that the staff were equally interested in both of our experiences and helped when it was needed or appropriate.

What also struck me was that my fear of being the odd one out amongst people who were all fit and toned was quite appropriate. They all were. My fear about them being superior or nasty to me because of my weight and difference was, in fact, unfounded. For the most part people were there to do what they do and it all seemed quite solitary. A few brief hellos when passing but little else.

So, I'm going to go a couple more times to determine if this is something I'm going to do or something I'm going to lose interest in. Then, maybe, I'll join. But it's nice that the decision is down to me and is only about my motivation, not about my reception or treatment at the gym.

On my way out of the gym I thanked them for their attitude of welcome and one woman said, "No problem, that's our job." I said, "That doesn't always make it happen though does  it?"

She nodded.

We'll see what happens next.

Not The Last Time

We took the elevator up, rolled over to the door, and opened it. No one was there. I pushed through the door and stopped for a moment. Memories rolled over me. Unpleasant. Unnecessary. Unwanted. But they were there anyway. As I sat, getting ready to roll, I remember all the times I came last, the taunts that were flung at me, the teachers who rolled their eyes. It seemed, in my youth, that humiliation was considered to be a motivator, and, I thought, that idea is still widely practiced.

Then, I pushed.

I didn't go quickly at first I wanted to feel the floor. As a wheelchair user I pretty much always check out the rollability of the surface that I'm on. Entering this particular building I rolled over slightly uneven blocks in a latticework patter, it was difficult to manage and drew my focus to both mapping and pushing just to get to the door. This floor, however, was entirely rollable, my wheels were working at maximum capacity.

Then, I pushed again.

The girls were with me, Joe had sat down at a bench by the door, just watching. "Are you going to go all the way around?" they asked with hope in their voice, "can we go with you?" I told them they could but that once I started, I wouldn't be talking because I need my breath for the work or getting around the circle.

Then, I started in earnest.

I was only there touring the facility. I'd already been to the gym and had tried all the accessible machines, now I was up on the track. They had been friendly and welcoming, showing me how to make three different machines accessible to me as a chair user. I have no past with machines like these, with the cables and the weights and the sophisticated control panels. I did have a past with track. My stomach would sour before P.E. (Physical Education) because I wasn't good at it and because my lack of coordination and speed further demonstrated my lack of worth.

Then, I rounded the end. 

The chair was going as quickly as I could make it go. I was breathing regularly, focused on staying in my lane, listening to the girls laugh as they ran with me. And suddenly, the memories were gone. It was just the push down the long stretch. I looked up and saw Joe watching, smiling, waiting for me. I wanted to show off a little so I rounded the other end dangerously quickly. 

Then, I was done.

With a new memory made. A new start. I'm thinking of joining. Once I left the past in my dust, the present and future felt very, very, different.

What About You????

I booked a hotel room today at a chain that I don't often stay at. I went on their website and could find rates and rooms but no information on accessibility. So, I called. I don't understand why accessibility is so foreign that it requires a call, why can computers handle it? Anyways, I called. The fellow who answered the phone was nice, really nice actually. I explained what I wanted and he went into the system to see if there was an accessible room available.

After a brief hold he came back to tell me that the accessible room, please not the singular 'the ... room', was occupied but there had been a note made that the person had requested a main floor room. He told me he'd call the guest that was scheduled to be in that room to find out if they needed the accessible room or if they only wanted a main floor room. I thanked him, he said he'd be back in a couple of minutes.

Maybe five minutes later he called me back. The person put in that room had not requested an accessible room, did not know that he'd been placed in one and was more than willing to move to a different room so an actual disabled person could have the room. Then we set about making the reservation.

The booking was done, he wanted me to wait until the email confirmation when through, which I did and then we were done. I said, "Thanks," and rung off. Seconds later I had this kind of realization that I'd not gushed gratitude towards him for doing his job and getting me the room I needed. I felt almost badly that I'd not emphasized my appreciation a little bit more. I felt like I somehow owed him.

I'm now really conflicted about just a plain 'Thanks' like any other customer booking any other room. He did have to go to extraordinary measures in order for me to have the room I needed. But, is that my issue? Should it be my issue? If they hadn't just randomly placed someone in the accessible room, I'd have just been able to book it.

ARGH!!

Sometimes I overthink things.

I do this a lot more as a disabled person that I ever did before, I'm not sure why.

Am I alone in this, do any of you run through routine interactions in your mind because of something to do with either disability or accessibility, I'm curious.

The Duck - Supplemental

Throughout our visit to the duck, there was a constant thrumming annoyance. To understand this understand that I'm a 64 year old man who, with a little help, is a good decision maker and has input into every decision that's made regarding everything. I'm lucky, I know. So here's the thing, throughout the whole trip people kept parenting me. Like I was not only a child but their responsibility as a reasonable adult in the presence of a child in need of instruction.

"Do you have sunblock on?" they would ask me, with Ruby and Sadie, two actual kids, standing right beside me.

"You need to have a hat on the sun is strong," which I agreed with but I forgot my hat because we left in a rush, not because I can't make a good decision about a hat.

"Careful now, you are too close to the edge," said to me while I was trying to get a picture of Joe and the girls close up to the duck, which I never managed to.

"Do you need me to find someone for you?" said when I was looking for Joe and the girls when briefly separated.

I know, I know, the impulse is to help.

But does that make it right?

If seeing a woman doing accounts at a desk and I said, "Do you want me to help you with that hard math?" I think it would be seen a sexist and inappropriate.

Would my defense that I'm just being nice be acceptable?

I don't think so.

So why is niceness a reason to discount the possibility of ableism or disphobia?

I got a lot of 'nice' on our trip to the duck. I'm not sure that I like it better than those who are openly hostile, it's easier to respond to hostility than it is to 'oppression by nice.'

The Duck ... Part 3

Finally the duck is in full view, we are all in awe of it's size, it's really big. It had been a lot of work getting there and the kids were thrilled to see the duck close up. They jumped off the end of the concrete pathway and down to the sand and ran right over beside the water where the rubber duck was moored. Beside the duck was a photo-op place with a 8 or 9 foot tall duck and a long line up of people were standing waiting their turn.

I knew that this was a costly duck, there had been controversy in the paper about the money spent to bring the duck to Canada as part of the celebrations of our 150th birthday. But, here's the thing, no money was spent on making it possible for people who use wheelchairs to get anywhere near the duck itself. The beach was full of non-disabled people getting selfies or drawing duck pictures in the sand.

Me?

I sat at the end of the concrete pathway and watched. Joe and the girls did beach stuff and I laughed and encouraged. I knew that this was an experience for the girls, we went for them to have a good time, they didn't need to have me yapping on about the inaccessibility of the area and the frustration of working really hard to get there, navigating crowds in a chair, pushing over uneven pavement, or dealing with attitudes that were less than welcoming. They had been ahead of me and missed the conflict that occurred when I had been backed into.

I had to do a lot of inner talk to stop me from doing a lot of outer talk.

I didn't want this to become about me, my disability, accessibility or anything else. It was fun, damn it, fun.

Once done with the duck hunt we turned and headed back. We talked about the duck and we talked about the sun and we talked about the fun we'd had. And all of that was true. We had had fun. We'd laughed a lot. I needed to remember that.

I need to remember that even with the shit you have to deal with when rolling, not walking, there is a reason to be out in the world. There are things to share with other people. I had to shove aside the feelings that tiredness brought out in me. Feelings of frustration about just trying to be in a line up or just trying to buy drinks, the feelings of anger at being told that wheelchairs, and by extension wheelchair users, had no right to share public space, feelings of aloneness when I had to watch everyone go to where I was not able to go are all real feelings. But they aren't the only ones.

We'd made memories.

That's what we set out to do.

And that's what we did.

Good ones. And not so good ones. But my choice is determining which one trumps the other.

The Duck ... Part 2

The crowds grew thicker as we got closer to the duck. We'd begun to be able to see the hard yellow rounded surface on top of the rubber duck's head. I was pushing my chair carefully. I don't let anyone push me in crowds, I need to be able to navigate moment by moment, people who push don't usually have to kind of determined focus to get through a bunch of people without running into them. I was bumped into several times and was always glared at even though I was always the bumped never the bumper. I was wearing a bright shirt under a brighter sun, I nearly glowed and this gave punch to my apology, which I did every time I was run into, that's a Canadian thing not a disability thing, I said, "Gosh, I'm sorry, I'm so hard to see."

Then the mini crash happened. As I pushed forward a woman stepped backward and the back of her shoe went under my wheel. I didn't run over her, but it would've hurt, I acknowledge that. She turned on me. She was angry, she told me that I needed to be more careful. I stated that she ran into me, not the other way round. "Still," she said, "those things," pointing at my chair, "shouldn't be allowed ..." And she stopped herself.

Now, I'm angry.

"Finish your sentence you bigot, finish your damn sentence!"

"I didn't mean ..."

"Yes, you did, now finish you sentence, I want to hear you say that I have no right to be here, that I should be in a room locked away from people like you, real people. Finish your sentence!!"

She tried to apologize again and I refused again.

"You don't get to say that and then get forgiven," I said. "You just don't."

I was now falling behind everyone and began to push forward, carefully, not wanting another confrontation, another run into.

I have a right to these spaces. I don't want to cede the community and community events to people who wish me away. But by good heavens ...

... it's tempting.

The Duck ... Part 1

It was way hotter than was predicted, the sun was stronger, so we'd headed out to see the world's largest rubber duck completely unprepared. We weren't exactly sure where the duck was so we headed in the wrong direction. I was in my manual chair and pushing on outdoor surfaces is still really difficult for me, I needed more help that I had anticipated because we'd gone so far out of our way. By the time we were passing Tim Horton's we all needed a bathroom break and something cool to drink.

We headed in and found that the line up for the toilets was much longer than the line up for food. So we got in it and there was immediately a problem. Some people believed, for some reason, that disabled people needed to go to the head of the line, others didn't. There began a weird spat. I spoke up and said that disabled people wait in line like everyone else. Then I parked, put on my breaks and waiting with Joe and the girls. A couple of people couldn't take the pressure of being in front of me and said that they'd find another bathroom and left. I refused to feel guilty because I didn't ask them to leave or want them to leave, a line up is a line up is a line up, doesn't everyone just know the rules?

Once done and coming out, I had to go by the line, that had continued to grow rapidly behind us. They collectively were too nice and thereby made it very difficult. Everyone did something to make more room. I didn't need more room, there was plenty of room for me to just roll. But because they hadn't coordinated, some pushed up against one wall, others against another and then there were those few who were so panicked about a person in a wheelchair coming towards them that they just froze in place. Now my way was effectively blocked. I had to ask each person to do something in order to make the way free. If they'd just stood in line, like they did for everyone else coming out, I'd have been fine.

I needed to get to the turn, not to the door out, but to the line up for food and drink. The people in the line up had divined that I needed to go out and therefore had cleared the way for me to go out. I didn't want to go out. But even when I asked them to move so I could turn into the other line up, they wouldn't. Several people explained to me that the way to the door was now clear. They were so happy they'd done this that they couldn't hear that it wasn't what I wanted. Finally I had to raise my voice and state clearly that I wasn't going to the door. Now, by their faces, I'm not only disabled, I'm an asshole. ARGH!

Then, we were out, and on the way to the duck.

The whole experience of just trying to be in a line up or push by a line up had been so exhausting that I felt that I was done at that point. I just wanted to go home. But I didn't, the kids were excited and they passed that along to me. But more was to come ...