Saturday, July 22, 2017

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.

Friday, July 21, 2017

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.

Thursday, July 20, 2017

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!


Tuesday, July 18, 2017

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.

Monday, July 17, 2017

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.

Sunday, July 16, 2017

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.

Friday, July 14, 2017

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.

Thursday, July 13, 2017

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.

Tuesday, July 11, 2017

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.

Monday, July 10, 2017

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.

Sunday, July 09, 2017

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.

Saturday, July 08, 2017

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.

Friday, July 07, 2017

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.'

Thursday, July 06, 2017

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.

Wednesday, July 05, 2017

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.

Tuesday, July 04, 2017

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 ...

Friday, June 30, 2017

resistance

"I don't like being referred to as 'the wheelchair.'"

I said it calmly and as 'matter of fact' as I possibility could. After being in a wheelchair for over a decade some of the emotion has drained out of my protests, which in some cases is a really good thing. I just want people to know that I object to how I'm being, pick one, ignored, passed over, stared at, invisibilized, or experiencing anti-anthropomorphization (taking human characteristics out of a human being or an organization run by humans).

While I have learned to speak calmly about these kinds of incidents, the reaction is rarely calm. I find that instead of a simple, 'Oh, you're right, I'm sorry,' I am mostly told that I am wrong, that I didn't hear right, or, the most common, "THAT'S NOT WHAT I MEANT." It angers people to be asked to speak respectfully to me as a disabled person.

Really angers them, or most of them at least.

I'm not sure why they react so strongly. Part of it is, I believe, that they see me immediately as 'uppity' and their natural assumption of a hierarchy wherein they get to speak of me however they wish but I do not get to challenge them in any way.

In this instance she stated that she was referring to my wheelchair, not me, which oddly was my point, and then she began directing us to go where we needed to go.Her face showed fury and she struggled to remain calm.

It's a small incident, hardly worth notice, but I wanted to write about it because it's these small interchanges, these little conflicts, which happen almost daily, wherein I think I'm right at the forefront of social change. I believe all of us who are different or disabled, every time we go out, every time we expect respect, make a difference.

Sometimes 'resistance' is a tiny act of assertion or a small ask for respect.

Thursday, June 29, 2017

48

Today is our 48th anniversary. It is not the anniversary of our wedding, it's the anniversary of our wedding. Let me explain. We had a legal, recognized by the state, wedding a couple years ago somewhere in the beginning of June. We don't commemorate that day, it's simply the day that the law got involved in our relationship. We commemorate a the day, where 48 years ago, we got together as a couple, recognized ourselves as a couple and committed to live our lives together as a couple. There was no church service, no gathering of friends, no pile of gifts, no first dance. We were fine with that, we'd found each other and that was, and should be, enough.

We typically mark this day by each trying to be the first to say "Happy Anniversary" - Joe won this year by sneak attacking me at 3:00 AM. We usually have hot dogs and potato salad as our anniversary meal, but this year our day falls on the same day as the last day of school so we will be going out for pizza with two kids who are growing far to quickly. Tomorrow we'll have the dogs and salad.

Nope. No card.

Nope. No gifts.

It's simply a quiet day of being together, much like every other day.

I got a lecture last year about how 'unromantic' that we were. I was told all the things that we should do. Dinner out, fancy dress, elaborate gifts, smooching over champagne ... um, no. That doesn't sound romantic to me, it sounds showy, it sounds contrived. Living in the shadows of other people's limelight has made us very comfortable with quiet moments of harmony.This is what gave us strength during the bad times, this is what got us through and this is what will keep us going.

So, hot dogs and potato salad, an anniversary menu that I anticipate every year. And, it's enough, well more than enough.

Wednesday, June 28, 2017

The Visitor

My father, right now, is receiving fairly significant care in a hospital in British Columbia. I went there to visit him and see how he was doing. For a 93 year old man he shows a strength of will that goes well with his strength of character. He is a kind, soft spoken man. People like him.

It's odd that what I admire about my Dad is also what worries me a little bit about him. There are times, as we all know, when being a nice person also requires being a strong self advocate. Given my Dad's age and temperament, would he be able to do that? So when I was visiting in the hospital I could tell that the nurses and doctors liked him and responded to him with kindness but I was also aware that they were aware that we, the family, were there and watching the interactions. I found myself watching their moods, watching the way they expressed themselves, watching how natural the interactions seemed.

I am not naturally untrusting but I'm also aware that systems are systems and that people who receive service within a system can cease to be anything remotely human. I don't want that to happen to my dad. I found no evidence of anything to be concerned about. Even at a distance, over the phone, speaking with nurses and doctors, I heard deep caring in their voice.

Situations like this remind me of the support that I provide to people with disabilities, would it withstand my own scrutiny of those who serve my father? Would my moods drive my behaviour or would my professionalism refuse temper to rule my words or actions? Would I speak with kindness or would I speak with patience, those are very different things, I wish people would realize that.

Kindness is different from patience and one doesn't guarantee the other.

Do I understand that well enough? I certainly did when watching those who came into contact with my Dad when I was visiting. I was pleased when a nurse came in to tell him about a procedure that needed doing that Dad stopped her and questioned her about what was going to happen and why it needed to be done.

My Dad didn't need me at all. He's got this. He in his own quiet way managed to communicate who was in control and who was making decisions and who had the right to question actions taken.

I think of this every time I call the hospital as I listen carefully to the tone of voice of the nurses I speak to ... do they know I listen for anger or impatience or frustration? I don't know. But if I miss it, I know my Dad won't.

Tuesday, June 27, 2017

Waiting

Waiting is never fun.

We left Vancouver well over an hour late because the plane had a slight mechanical problem which needed fixing before take off. So it was dark when we landed, Joe needed to wait for a shuttle to take him to the car, the shuttle wasn't accessible so I had to wait in a different spot not knowing when he'd be arriving. I wasn't in a bad mood, but I was tired. My face, at rest, looks angry. My face when I'm tired makes me look very severe. I know that. People leave me alone as a result. I'm got with that.

So, I was surprised to be spoken to.

A girl of maybe 12 or 13 was standing beside me looking at me intently. She was with her mother, who like me, was watching an unending flow of cars for one she recognized. I looked over to her, not quite hearing what she said, "Pardon me?" I asked.

"It's not OK you know," she said.

I didn't know what she was talking about. "I'm sorry, what's not OK?" She paused, took a breath and said, "The way people stare at you, it's not OK." I was flabbergasted. Partly because I hadn't been noticing others noticing me, I was just looking for our car in the long line up of cars coming to the pick up area of the airport. I looked around and did notice the occasional stare or two. I didn't know what to say to her.

"People sometimes stare and me and my mom, and it's not OK." She was quietly adamant. She and her mother were both people of colour and I could imagine exactly what she was talking about. I was sorry that she had had the experience of 'othering' that comes with being stared at.

I measured my words. My first response had been, "I'm used to it," but that had been when she first spoke. I was not going to say to a child that hurtful behaviour becomes the norm and that one grows accustomed to it. I simply wasn't going to say it. I couldn't.

So, I just said, "Yes, it's wrong. People know better." She nodded her head, "Good, so you know," she said.

I nodded my head and we both fell back into waiting.

Monday, June 26, 2017

Alienization

Joe and I did something that we never thought we'd do yesterday. We went shopping for a basketball. There are hoops outside the front of our house that are there for community use and we thought that maybe the girls would like to use them, therefore, the ball. We went into a store that sold them and faced a wall, a mighty wall, of basketballs. The first ones we picked up cost a fortune, I didn't know what to expect price wise but wow.

Finally we found a ball that was inside our price range and just as we picked it up a clerk came over to help. He spoke to Joe asking if he could help. Joe shook his head, we'd made the decision after all, and I spoke up. "We want this ball just to shoot hoops out the front of our place, is this the kind of ball that does that?" He looked at me oddly and I said, "Well there are so many balls here of so many prices, I wanted to know if this one had the 'neighbourhood hoops' feature." 

He nodded and said,"YOU want a basketball?"

I looked at him, he was young. I don't expect that kind of stuff from someone so young. He looked like he was in high school. Don't disabled kids go to high school, don't they play ball?" I don't know the answer to that question in his case. But even if they didn't isn't he aware, even slightly, of wheelchair sports. But maybe he didn't mean the wheelchair, maybe he meant my weight. I don't know but even if he did, why wouldn't a fat person want to throw a ball, is he thinking that it would get in the way of eating a cake or something. Any fat person knows that there is virtually nothing that can't be done while eating a snack. Shit.

"YOU want a basketball?"

It's another instance where I became 'alienized' by someone. Made so different from humanity that any hint of humanity is shocking. But there I was being fully human in front of him and there he was looking like he would have a story to tell that no one would ever believe.

Yeah, I want a basketball, how freaking freaky is that?

Sunday, June 25, 2017

Again and Again (A Pride Day Post)

Image result for rainbow flag in a fist
Image description: a graphic design of a fist with the fingers being different colours of the rainbow. (I don't know who owns this art, if it's use here is unacceptable, please let me know and I will take it down.)


I met a man

At a dinner party.

Who got very quiet

When I answered his question.

What do you do for a living? he asked.

I told him, with pride, what I did

"I am a behaviour therapist," I said.

"Oh," was all he said

before he left the table.

The host got up

and followed his friend

out of the room.

He came back and asked

"What did you say to him?"

I told him about

our brief conversation.

"Oh, no!" he said,

"Oh, no!"

His friend

had been

involuntarily

admitted

to a

psychiatric

facility

for

behavioural

conversion

therapy.

It involved

using

shocks

for

punishment

at

any

sign

of

arousal

to

pictures

of

men.

They

put

a

gauge

around

his

penis

and

showed

him

male

images

and

shocked

him

and

shocked

him

and

shocked

him

if his body

responded.

Again

and again

they

burned

his

flesh.

He was left

scarred

body

and

mind

by

people who do

what I do.

That I wouldn't

didn't matter.

All that mattered

was that

someone had.

He left

the party.

The seat

beside

me

stayed

vacant.

I sat

silenced

unit it was time

to go.

That

man

one

day,

when I

ran

into him

at a

parade,

told

me

it

took

years

but

that

pride

had

begun

to

heal

his

wounds.

But,

he told me,

sometimes

when

he

makes

love

to

his

husband,

he

can

smell

the

light

scent

of

the

flesh

on

his

arm

being

burnt

by

one

shock

after

another.

I wouldn't ever

do that.

But it's been

done.

And

ultimately

that's

all that

matters.

Take

warning

those

who

wield

and

misuse

power.

Pride

will,

one day,

bring

you

down.

Saturday, June 24, 2017

The Late Flight Miracle

We boarded the plane, got in our seats, and watched take off time come and go. Every 10 or 15 minutes there would be an announcement that the flight would take off in 10 or 15 minutes. About an hour and 20 minutes later, they announced that the "small mechanical problem" was fixed and the paperwork just needed to be signed off. Finally, we were in the air.

Joe and I were lucky because we were flying home and Toronto was where we got off. Many, many, other people on the plane weren't so lucky, they were flying through Toronto and needed to make connections. The length of delay meant that there would be tight connections at best and missed at worst.

I never watch television or movies on the plane, I have a book and that's movie enough for me. What I watch is the map that's provided as one of the video options. All it does is show the progress of the flight and give information as to arrival time and altitude and temperature outside but the best thing is watching the little plane slowly make it's way across the screen following a flight path marked out by a green line.

As the plane got closer, the atmosphere on the plane grew tense. Around me people who had been watching movies flipped over to the map as well. We all watched the approach to Toronto and the time passing. Whispered conversations were being held by couples and by parents and children. There was a sigh of relief when the plane touched down.

About five minutes before landing, there was a passenger announcement. We were told the gate we were arriving at and the gates of soon to be departing flights to varying places, all of which were destinations for those who had connecting flights. Pens quickly wrote down the gate numbers and a diversity of Gods began to hear fervent prayers.

As we pulled to the gate, there came another announcement. this one was quite solemn in tone. Everyone picked up on the seriousness in the tone of voice. It asked for those passengers for whom Toronto was their final destination to please stay on the plane for a few minutes and leave the aisles free for those who had connections. It was explained to us that the pilot had made up some of the lost time in flight and that if we gave people the opportunity almost all of the passengers with connections would make their flights.

I could hear in the voice a tiredness. I understood this. I've been on planes before when this request was made and virtually no one complied. People got off in the same way that they always do, as soon as they could. I am used to waiting to get off a plane and I'm always surprised at how quickly it empties. It's not a long wait. It's a small thing to do.

Some passengers were so anxious to get off that they were getting up and getting luggage as we were pulling into the gate. They were told firmly to sit down until the plane stopped moving. Their anxiety was understandable. Seconds before the door opened the appeal was made again, if we were getting off in Toronto, wait just a few minutes for those travelling on.

And people did. I turned to see the aisle full of people running, actually running, down it towards the door and people standing, waiting, some calling out "Good Luck!" to their fellow passengers who  zipped past them. I'd never seen this before. I'd never seen a whole plane, filled to the brim, let those who needed fast exit have fast exit.

Just a moment of time.

Just an exercise of patience.

And a touch of restraint.

Can communicate who we are in powerful ways.

We, collectively, had the opportunity to allow people to move on in their journeys, to make it home to spouses and kids, to make up lost time. We, collectively, could demonstrate the power of valuing another's time and another's needs.And, we did.

It's a small moment but it will be a big memory.

As we always get off last, I saw the Toronto bound passengers faces as they disembarked. Everyone was surprised by everyone else, everyone seemed surprised that this had happened and that they were part of it. We are all now going to be part of everyone else's story.

And it's a good story.

Friday, June 23, 2017

2X 3 Things

Three things:

1) Ignorance is not bliss

2) Ignorance is never an excuse.

3) Ignorance is almost never the problem.

Recently there was an incident in Canada, that I will not link to, where a woman went on a racist rant at a walk in clinic wanting a white doctor who spoke English. Thankfully there were people there that stood up to her, which always gives me hope, but the video of the event and her outburst was everywhere for a while. I was appalled at the time but became even more so when I heard the discussion about her behaviour.

The general consensus was that she was "ignorant." People talked about her as if she was in desperate need of some kind of sensitivity training or diversity training or anger management training.

Because, of course, white people aren't ever racist, or sexist, or homophobic, or ableist, or disphobic, or prejudiced in any way. We are just a little misguided. We just need a glass of juice, a cookie, and a 20 minute class and we're back to being good, well behaved white folk. "Poor dear," we seem to say as we acknowledge that what she did was racist and then we explain that while her behaviour might be considered racist, she certainly isn't, "she's just ignorant and needs some in class time with a teacher and a power point presentation."

I'm tired of ignorance getting the blame for blatant prejudice and bigotry.

Call a bigot a bigot.

Call our prejudice where prejudice exists.

Explaining way someone's behaviour brings into question your own behaviour. Why do you have a need for this to be 'ignorance' and 'poor dear' behaviour?

Remember when teens were coming to the gay area of Toronto and throwing slushies into the faces of people they tagged as members of the lgbtq+ community? The result of all the television discussion was that these teens need training.

No one needs training to know that you don't throw slushies into the face of strangers.

No.

One.

It was blatant prejudice and those teens were wilfully and purposely homophobic.

That woman was wilfully and purposely racist.

Get it.

GET IT?

Accountability begins with naming the problem. It is entirely possible that a woman who yells and complains in a racist manner is simply and maybe even irredeemably racist. It is entirely possible that she believed that everyone else felt like her but was afraid to say it. It is entirely possible that she meant ever racist thing that she said. And if it's possible then that possibility needs to be discussed. We need to own racism and sexism and homophobia and transphobia and ableism and disphobia and all the other forms of prejudice, we need to recognize that these exist independently from ignorance or a need for training. That these things are even resistant to cookies and classes.

She was racist therefore she is racist. Isn't that an easy step.

Isn't then the question how do we deal with racism or how do we prevent racism or how do we support her victims? Yes, she had victims. Not one word has been said about the impact of her words on the doctors and nurses who were there, on the people of colour all over the country who watched that video, the kids of the people of colour who asked their parents questions about what happened.

That racist woman hurt people and that's not okay and what needs to happen next? For her, for her victims, what needs to happen next?

Three points:

1) racism is a deeply embedded attitude it is not ignorance

2) bigotry needs to be called out for what it is

3) giving excuses to prejudice reveals even deeper prejudice

Thursday, June 22, 2017

Fog Rukkers

Related image
Image description: A coffee hut, made of barn board and a bit of paint sits on the beach in Campbell River with a mixed bunch of tables and chairs.

I spotted Fog Rukkers coffee shop on our first drive through Campbell River on the way to see my father in the hospital. I made a mental note of it wanting to go in for a cup of tea and hopefully to sit at the ocean side of the hut and wonder at the view. But then, we got busy. With family visits and gallons of tea consumed all over town with various branches of the Hingsburger or Jobes families (Joe and I met in high school here so both families are here) we just never got there.

On our last full day in CR I told Joe that I really wanted to make it there if we could. We got in touch with Shannon, our niece and she was more than game to go with us. Was it wheelchair accessible? Didn't know. Were we going to make it wheelchair accessible if it wasn't? If we could, we would. We pulled up and took a good look. With some manoeuvring we got me out and on the bicycle path. The as they parked, I rolled up and onto the front patio. Was there a patio at the back? Yes. There was no way I could go around the hut because it was too rocky. So it had to be through.

The door was too narrow when one was opened, we then unlocked it's partner and swung both open and I was through. The concrete was uneven, it was difficult to push and go in the direction I wanted to go, the wheels and the tilt kept suggesting a different course, but we made it through to the back patio and took a table.

I haven't sat on a beach, anywhere, since becoming a wheelchair user. I gloried in it. We chatted and we laughed and we marvelled at the beauty of the world. It was beyond nice. I felt myself relax. It had been a race out here to see Dad while he was in the hospital, and he was doing so much better and we had had a really good visit and now was time to just let go of the tension.

Driving away I thought to myself that this place and this moment was now going to be my new 'happy place' when I need to take a breath.

Sometimes that's all we need.

A breath.

Of fresh ocean air.

Wednesday, June 21, 2017

A Picture of My House

Just before leaving on this trip, I mentioned to Ruby, who is now 10 years old, that my father was in the hospital. She stopped and looked at me, "Why didn't you tell me?" she asked. I told her that she knew he had been in before and he had to go back. "You should have told me," she said again and then began rushing around looking for paper, for pens, for anything that could put colour on paper. Now this was happening in our new apartment and all there were were boxes upon boxes upon boxes. Soon both Joe and I became distracted with the move and didn't notice Ruby in the kitchen working away.

A half an hour or so later she comes out with a piece of crumpled yellow paper, all she could find, and on it she had drawn a picture of our new home with Joe and I, her mom, her sister and herself out front. She wrote a note to Jerry. This 10 year old was writing a 93 year old and addressing the note as if he's her best friend. She said in the note that Joe and I had just moved and she wanted him to see our new house so that he, Jerry, would know we are all okay. She thought he might be worried.

We carefully packed the paper away to bring to dad in the hospital here in town where we are now. Dad had heard about Ruby and Sadie of course because they are a big part of our lives and we talk about them. Dad has never questioned the fact that the girls are like family to us and has treated them in our lives with the interest that they deserve. So when I told him about Ruby scolding me about not telling her about him being in the hospital and about not having the stuff she needed to make a drawing, then I handed over her drawing.

Ruby's writing at 10, she prefers cursive to printing, is better than mine. He lay in his bed while reading the note, his face brightening at the boldness of her determination that she could call him Jerry as if they were friends. It was a nice moment, he loved the picture and he asked for it to be put up where he could see it. It's there now, a note from a child who never met the man who is my father, a note telling him that he didn't have to worry that we were all okay. A note that said, "though we haven't met, I love you because you are Dave's dad."

Before he asked for it to be put up he said, "She's quite the little girl isn't she?"

And she is.

It only take a moment of thoughtfulness to make someone feel cared for and loved.

Ruby took that moment.

I need to do that more often, I've got papers, I've got pencil crayons, I've got time, though I pretend I don't. I just need a little more of what Ruby's got ... the will to do something for someone else even if it seems there's nothing I can do.

Tuesday, June 20, 2017

What I'm Doing Today

Guess what I'm doing today?

I'm doing a webinar.

Guess why I'm excited about it?

Glad you asked.

Today I'm part of a webinar about an article which was published in the International Journal for Direct Support Professionals, it was about pride, and about the LGBTQ+ community and about how that intersects with the community of people with intellectual disabilities. I am one of the co-authors of this article. The article itself felt good to write, it's been a long time since I published on the issue, and we live, here, in very different times. When I published the first time, I believe it was the first journal article suggesting that people who were LGBT+ and who had a disability had a right to receive service that was respectful of their sexuality. I lost a lot of work because of that article.

This time we are talking about PRIDE and sexual diversity and, again, the need for people who provide service to be aware of their actions and their attitudes. And because of a partnership with the National Alliance for Direct Support Professionals and Handsthefamilyhelpnetwork.ca we do monthly webinars on the topics raised in the newsletter.

I am thrilled to be speaking to people who, most probably, have a lot of influence and power in the lives of the people we serve. I hope that what we do today will further the rights of people with intellectual disabilities to be fully human and for their hearts to be fully free. How great is that?

If you want to sign up, it's easy ...

Let's Talk: Speaking OUT: Understanding Sexuality and Diversity in LGBTQ+ Individuals with Developmental Disabilities on Jun 20, 2017 2:00 PM EDT at:

https://attendee.gotowebinar.com/register/2490233691429208321

Hope some of you drop by.

Monday, June 19, 2017

Silly O'clock AM

We were up early for the flight. It was complicated figuring out how to do get me to the airport, then Joe back to park the car and then on the shuttle back to meet me where I would be waiting. The complication was of course, timing. So we were up at silly o'clock and down in the lobby leaving shortly thereafter. Joe loaded the car as I was pushing over to it.

It was dark.

It was early morning.

There was no one around.

I didn't feel particularly unsafe because it's a hotel parking lot, and we were in disabled parking, near the door. Joe passed me on his way back with the cart and I was pulling up beside the car. It was a slight incline and the pavement was rough so it took a bit of strength to get up to the passenger side door.

Just before I got there, I felt a shadow fall over me, cast by the streetlight a ways away. I knew it wasn't Joe, I turned to see a man approaching me, his hands out as if to grab ...

... now in other circumstances I would have immediately thought that he was going to grab the handles on the back of the chair to "assist me" but it was early, it was dark, it was deserted.

I panicked.

I didn't scream but I startled away from him, throwing myself hard and wrenching my back in the process. He saw me do this and then realized what was going on in my head and he said, "I was just going to help you." He seemed angry now and paused. I just stared at him. He turned and stomped away.

He scared me.

Really scared me.

He reminded me of how vulnerable I am.

Yes it was early and dark and deserted but I have a right to feel safe when it's early and it's dark and it's deserted. He had no right to intrude upon me in any way. I was pushing myself. I was alone. It was clear that if I'd needed help I would have had it with me.

Joe came back and saw the fellow walking angrily away from the car.

"Oh, no," he said.

"Indeed," I said.

It took me until we landed to tell him what had happened. I'd been sorely shaken and I was left physically sore from the encounter.

Mr. "Just trying to help" acted as if I'd hurt his feelings, he'll never know the damage he did to me and I suspect he wouldn't get it.



Sunday, June 18, 2017

Dads Plain and Simple

Getting ready right now to head to the airport for a quick flight to B.C. for a visit with family. Will see my Dad for the first time, on Father's Day since I left home at 16. Should have written a blog last night but was busy with so many things associated with moving and travelling, mostly packing and unpacking.

So, just a quick Happy Father's Day.

You will note that I'm not going to separate out Father's of kids with disabilities for a 'very special' Father's Day. Loving your kid doesn't make you special, being loved by them does. Any kid. Any where. Any dad. That's the way it works.

There is no hyphenated parenting.

Special needs Dads, I heard that yesterday and thought, what on earth might a man need in relationship to his child that makes him special? I hate the term 'special needs.'

Adoptive Dads, so why is that information necessary, what makes it matter and if it does, take Dad out of the title.

Substitute Dads, what even is that?

So happy (no hyphen) Father's Day.

Saturday, June 17, 2017

A Sheep in Sheep's Clothing

Photo will be described in the body of the text of this post.
Sadie proudly pulled out of her school bag the gifts she had made for her dad on Father's Day. There were a lot of them. She quietly sorted them out so that she could display them properly. I got a chance to see the gifts and, as always, I was quite moved by them. She put so much effort into hers. At the end, she looked at one last gift, sitting on the side table where she'd sorted them all out. After some thought she brought it over. It was a picture of a sheep. A one eyed sheep. It had the words Jesus Love's Us Always and Jesus is always in our hearts. She explained to me that when she made it, she had glued on two eyes.

She became a little upset when this happened, she said, and almost threw the artwork out. I asked her why she didn't. I know Sadie and she is very serious about her work and wants it to be just right. I was curious as to her reasoning.

"Well," she explained, "It's okay for a sheep to have one eye. It's still a sheep. It would be fair to throw a sheep away or hurt a sheep just because it had only one eye, would it?" I agreed that it wouldn't.

I asked her if Jesus would love a sheep just with one eye, or would the sheep have to have two eyes to be loved.

That I was told, was a silly question.

And she refused to answer it.

Because it was silly.

It should be a silly question shouldn't it? The answer is obvious to a seven year old girl. We are loved, perfect or not, and we are worthy of being kept and loved. We should expect kindness, different or not, and we are worthy enough to be seen has a gift. We should not be thrown away, two eyes or one, and we are worthy of welcome and belonging.

People will say, I know, that children can be wise, and of course they are. But worries me that is that the wisdom of children is seen as more cute than wise. What worries me is that we listen and smile at the words rather than being moved into action by the words.

Sadie's view of the value of everyone is a direct challenge to all of us, who find her words wise, to demonstrate that every day.

Every. Day.

Friday, June 16, 2017

In

We've moved.

Joe has spent the day with the movers. I've spent the day at the office. I'd get in the way, not because I have a disability but because I get stressed in these situations and that can make me difficult to be around. Joe wasn't at all disappointed that I decided to come to work.

He's on his way down to pick me up.

It's taken much longer than they anticipated or gave us an estimate for. I can feel the dollars falling out of our wallets. We'll face that bill when we get it.

All day I've been calling to check in. Because distance and distraction isn't enough of a barrier to stop me from being an annoyance to the process.

So I'll get to a place with movers still piling in stuff.

Boxes will be strewn everywhere.

But, I'll roll in to my new home.

It was weird leaving our old place. I was terrified that I might fall in the bathroom just one last time and relieved that I didn't.

I rolled down the hallway realizing that the past was now behind me and the future now before me.

Our life in a new place began, for me, the first time I realized today that I was going to be going north, not south, to get home.

Different roads.

I will sleep with my head to the south instead of my head to the west. I wonder if that will matter.

Accessibility waits for me.

I'm excited but I'm scared, we were so happy where we were.

This is why moving is so unsettling, I know how the past worked out, I don't know the future will.

I was told today that this is the stuff that keeps you young.

I'd prefer potion in a jar.

Thursday, June 15, 2017

What I'm Proud Of ...

"I respect your work regarding disability as many do, but I find when you post about your sexuality that I am quite uncomfortable. I'm not homophobic but it seems out of place on your Facebook page or on your Blog both of which deal mostly with issues affecting people with disabilities or, like myself, parents of someone with a disability. What I don't understand is why there is a need for the public display of pride in one's sexuality. You often write about boundaries, aren't you contradicting yourself when it comes to pride? By the way have you noticed that your posts regarding you being homosexual get fewer comments and shares than your posts regarding disabilities, I think that might tell you that many feel the way I do."

Nice way to kick start the morning.

Yes, I have noticed a distinct difference in response to posts about my life as a gay man and posts regarding my life as a disabled man or as a disability professional. So what? I'm not sure it means what is being stated here. Both my blog Of Battered Aspect and my Facebook page have specifically courted readers from the disability community and of course posts about other issues would get less of a response. So, no biggie and, more importantly, no message.

Why Pride?

I get this question a lot about gay pride and disability pride. Why? What does it achieve? Well, I'm going to write about Gay Pride here and I think you'll easily be able to extrapolate to disability pride as well.

Pride isn't about my sex life. Don't you get that?? My desire to love and have sex with another of my gender is the source of my oppression, surviving that oppression is the source of my pride.

Let me tell you, surviving is exactly the right word because many don't. Many kids are thrown out of their homes by parents whose promise of unconditional love vanishes upon learning their child loves in ways not approved by faith or by tradition or by deeply held prejudice. Many teens commit suicide because they can't endure another day of bullying, another day of hiding, another day of lying. There are no words to describe what happens, inside when, as a teen I heard the words you used, about me, in my presence. The fact that you didn't know I was gay mattered not, what mattered was it showed me who you were and how you felt. I internalized those words, 'fag,' 'pansy,' 'sissy,' 'gearbox' 'queer' 'fairy' and when you weren't there to call me names, I was. I learned from you how to throw these rocks at myself. Whenever I saw a man that I was attracted to I hurt myself. Inside I was bloodied by the words you taught me to call myself. The postmaster of my town was gay. They tortured him. His house was routinely vandalized. He was spoken to with contempt while he simply was carrying out the functions of his job. The fact that he went on, quietly living his life, was one of the few things that gave me hope. His pride never wavered, but mine did. I attempted suicide when I was 15 and fell in love a year later with the man I still love now.

I survived.

I survived the messages of disapproval of my nature.

I survived the messages of condemnation for how my heart worked. (Rather than celebration for the fact it worked at all.)

I survived you, and those like the woman who wrote me the letter.

I survived and I want to dance in the street to flaunt the fact that, though you tried, your hate didn't kill me.

I am not proud of the fact that I love a man named Joe. Why would I be proud of that? He's probably the easiest person I know to love. He's just naturally a good guy. I also am not proud that Joe loves me. This would mean that I believed that Joe's love of me is extraordinary because I'm disabled and I'm not traditionally considered attractive. But you know what, that doesn't matter, what matters is that I think there are things about me that are lovable. So, my pride isn't about that. My pride is that our love and our relationship survived.

Let me tell you surviving is exactly the right word because many relationships and many loves didn't. Yep, your oppression killed love. your oppression took away from a world that desperately needs more hearts to be filled to the brim with adoration for another. When a heart is full of love, there is no room left for hate. Joe and I got together in Grade 12 and back then no one could know. The secret was so deep that we couldn't even effectively talk about who were were and how we felt to each other let alone anyone else. We pretended friendship. We pretended not to care. We pretended that our hearts beat to straight time. And it nearly tore us apart. Over and over and over again we endured losses. Friends, discovering and friends leaving. Family discovering and family leaving. Landlords guessing and apartments denied. So much betrayal. So many lies. But, we endured. We're celebrating our 48th anniversary on the 29th of this month.

We survived.

We survived a life lived in the shadows of your discomfort and your disapproval.

We survived the constant insistence that gay men couldn't form relationships, that we were too promiscuous to form a home with another.

We survived, those of you who still see our relationship as worth less than your own.

We survived.

And if we want to hold hands as we parade down the street, and if we want to have a little kiss in full view of you and those like you, who could blame us?

But I am proud of my sexuality. I am proud of the community that formed around sexuality and gender and the multiple and intersection ways that these interact with each other and with the other identities we carry in our lives. I understand that my disability sometimes feels unwelcome in parts of the LGBT+ community. I understand that though we are all different and that we have the experience of difference we haven't conquered the baggage that comes with that. Understanding our own difference does not mean that we are more likely to understand the difference of another.

Racism, and sexism and homophobia and transphobia and ableism and disphobia exist in my community. But even with deep divisions and even with distrust and even with hurt, we move forward to change the world. We move forward towards a day when kids who are different don't die early deaths, stabbed in the heart with the ice pick of prejudice. We move forward towards a day when people can walk safely down the street and that we can predict with some surety that when we leave our homes, we will come back to them. We move forward to a time when being able to go for a pee doesn't require meetings and policies and, for heaven's sake, training. We move forward.

I am proud of what my sexuality has brought me. I am proud of the gifts that lay hidden under layers of hatred, and I'm proud of those who struggled in the years before I was born and the years before I came to the realization of difference for hiding amongst the rubble the message that I am part of the history of a people who have a tradition of surviving and a history of loving anyway.

We are community and we have survived repression.

We are a community always under attack.

We are a community where young gay men are thrown off rooftops and young transexual people of colour are murdered in the street.

We are a community that survives and continues on and loves anyway.

This is cause to dance down the street. This is cause to flaunt our bodies, our loves, our selves in any way we want. When you could no longer put is in actual cages, you attempted to put us in emotional cages and we broke out.

We are free.

We survived.

And we love anyway.

So we dance, prance and roll down the street and make our visibility our statement.

And for the record, I don't care how many people 'like' this post. I don't care how often it's shared. Why? Because that's what you think matters. What I think matters is that this post exists because I survived and I am loved and I am freaking proud of who I am.

Wednesday, June 14, 2017

Sitting Outside as Rebellion

I was sitting outside. The weather had just crossed from warm to hot. I was waiting for Joe to bring the car. I wasn't doing anything more that watching people go by and soaking in the heat. I was loving it, remember we Canadians can wait a long time for summer. A man was coming my way, I saw 'the look.'

I wonder if other disabled people notice it as well. It's a look that says, "I'm going to intrude into your life, even knowing I am a stranger to you, because you need me.: At lease when I see it I can prepare for what's coming.He got close to me, not weirdly close, just conversation close and he, this man a year or two older than me, "You need to go in to where there is air conditioning. It's too hot to sit where you are." I told him that I was good where I was, he said,"Well at least move into the shade." I told him that I was enjoying the sun. He actually threw his hands up in frustration as if he'd just spoken to a disrespectful child who wouldn't do what he was told.

I'm 64 and, I have no illusions about this, I look 64. Yet people still feel compelled to parent me. People still feel it's their right and their role and their responsibility to act as parent towards me as if I've never actually grown up.

While I'm used to it, it bothers me every time. I think it's because, in that situation I often forget the dynamics, intrusive stranger/me, and retreat to parental concern/me. I explain what I want, I hold my ground but I forget they have no right to tell me where I can and cannot sit on any particular day.

This innate need to parent the disabled that some people have, I wonder if it sometimes creeps into care. I wonder if staff start seeing those they support as those they parent. Yikes. That's a mistake.

I wonder if parents of kids with disabilities are able to transition to parents of adults with disabilities.

I know you know that I have the assertion skills to deal with these instances which many with intellectual disabilities don't. But do you know how it chips away, slowly over time, at my sense of self as a fully adult man? Maybe because the damage can't be seen, like if he'd punched me with his fist. But he did punch me, with his assumptions and stereotypes, and though I never bruised physically doesn't mean no damage was done.

Prejudice and assumption hurts, when done by a stranger.

Imagine how it feels when done by someone who says they love you or someone who says that their job is to support you.

Just.

Imagine.

Tuesday, June 13, 2017

WFPD

I'd known her since she was a teen. She'd been referred for her 'rebellious nature.' Well no behaviour program in the world can ethically try to eliminate someone's nature. And when 'rebellion' is an appropriate developmental step, eliminating it simply stunts growth. I'd had all these thoughts in my mind when I want for my first meeting with mom. It took a lot of listening to a very frustrated mother. Her child was disobedient and moody, she was bucking authority and talking back. She missed her daughter the smiling happy child that loved her and listened to her. That child, a kid with Down Syndrome, had hit her teens and thrown every 'forever happy' stereotype, that's tucked behind that extra gene, in the garbage.

After she vented, I took a risk, I said, "I'm afraid your child's primary diagnosis is no longer Down Syndrome, she is now, and I'm sorry to say this, a teenager." She laughed and after a moment said, "Yeah this is what all my friends with teenagers are talking about, I just didn't expect," and here she stopped herself, "that my daughter would get there too." It was a moment of realization. So I did come, and we worked on coping strategies and teaching her daughter skills that teens need in order to be safe.

I tell you this because I ran into teen turned young woman a few days ago. She had bright pink hair and a nose ring. I almost didn't recognize her but when she stopped to look at me, recognizing me without remembering me, it all came flooding back. I called her name and said mine and she walked over laughing. She asked me why I was in a wheelchair now and then I told her that I loved her hair, it could not be more pink, it was the pinnacle of pink. She said, and I'm quoting here, "Yeah, fucking awesome isn't it?"

I was taken aback. Now before going further here's full disclosure, I am not surprised or startled when the f-bomb is dropped into a conversation. It is so frequent in conversation that it's punch has lost a bit of strength. But I was taken aback because I don't often hear people with intellectual disabilities, who aren't 'having behaviours' as people like to say, just use it calmly as part of a conversation.

She watched my reaction, smiling, then she said, "I'm an adult, I get to pick my words."

I agreed that she was.

Afterwards I thought that what she had said was interesting. "I get to pick my words." It's a statement of some power and complete autonomy. That's what free people do.

Yes.

That's it.

That's what free people do.