Thursday, September 21, 2017

One

There is an idea about inclusion that I think needs to be examined. I also think the only people who can examine this are those who are out in the community working or participating in some way. Those who have been 'included.' More and more I believe that the end result of the movements towards community living and integration and inclusion should be evaluation by those who, firstly had no say in the development of the idea, and secondly, those who are at the mercy of other people's good intentions. The disabled voice is an important voice and it's the only one that can determine if what was done met their internal goals of belonging and feeling welcomed.

I went into a place where they had a man with a disability, both intellectual and physical, who was a ticket taker. When I came in, he spotted me and smiled, I couldn't get my chair around an entrance barrier so he came over and undid a clip that would let me in another way. I thanked him, gave him my ticket, which he ripped, gave back, and said, smiling hugely, 'you're welcome.'

On our way out he spotted us heading to the exit door. He took a quick look around and saw that at that moment he wasn't needed. I also noticed that the other staff in the area were all laughing and joking and he was seated quietly on the chair set up for him to sit on while taking tickets.

He came over and asked how I had enjoyed myself, keeping his eye on the door at all time, this guy took his job seriously. I told him that I had and he said that he was really glad. On his way back I said, "It's hard being the only one sometimes isn't it?" His eyes filled with tears and he nodded.

I understand that. I am often the only disabled person in a place. I feel, sometimes, so isolated and so alone that it takes my breath away. Seeing another disabled person, not even speaking to them, just seeing them, is a big deal. That alone reduces my sense of being alone.

I am glad he was there. I just hope that those who support him understand that the work isn't done. He's alone. Really alone. Yes, it's a job. Yes, that's wonderful. But he didn't have a job like others in the same place the others that were laughing and talking and making work a social experience. He sat on the edge of exclusion while a number in a column somewhere would count him included ... inclusion at work.

One is the loneliest number that there can ever be. 

I doesn't have to be.

But it often is. And all it means is that the first step has been taken, and many more are yet to follow.

Wednesday, September 20, 2017

I'm Reviewing The Situation

We were considering going to an area of town called The Old Mill Market and had nearly dispensed with the idea. These kinds of markets, in old buildings are often less than accessible and really frustrating for me as a shopper. So I went to a review site where customers can rate a place and write commentary. I was hopeful because there were nearly 100 ratings. I did a search for the word 'accessible' and when nothings showed up 'wheelchair and found, again, that nothing showed up. Not one review mentioned accessibility.

The front desk was our next shop and we were informed that, without a doubt the area was accessible. They explained that the name was misleading because it was where the old mill was but it was a fairly new development. Thus assured, we went.

When we got there we were met with a completely accessible experience. Although I never had to use the toilets so don't know about that, but all the stores I went to, I got into. And, most importantly, Joe and I spent time talking about things other than disability, accessibility, cut curbs and ramps. A nice break. We had a good time.

Got home and went to the review site and reviewed the area both from a shoppers point of view and from an accessible point of view. I used accessible in the title of my review and the word wheelchair in the body of the description of the area. I wrote about other things too, of interest to all readers, but I wanted any other disabled sod who wanted to find out if it was accessible to be able to search and find my review. We almost never went. We would have missed out.

Please, those of you who have the time and the inclination go to a travel review site and review the places in your own town from a disability perspective, write reviews when you travel. It doesn't take long and it's a way we can help each other out. Even if you don't have a mobility disability, write about your own personal disability experience for others with similar disability or accommodation needs.

We'll help each other and occasionally, a bad review of a place will change things. I had a hotel write a response and then talk to me on the phone, when I called as asked, and they completely altered how they did the barring in the bathroom and shower. They loved feedback from someone with a disability rather than from a consultant without one. So it can  make a difference. It's the power of social media to inform and to inspire change.

I'm beginning to feel like an advert so I'll stop now.

Tuesday, September 19, 2017

The Meaningless Chair

Back in my chair I pushed into the gate area through a wide doorway. There was nothing in front of the door, of course, nothing that would block the flow of a lot of passengers disembarking. Off to the side was a podium, the kind where they check your tickets and documents when you are being loaded on to the plane. Behind the podium was a tall chair, on swivel wheels. Again, it was well off to the side. No one was at the podium or on the chair. There was, however, an agent working the next podium over.

She must have noticed me out of the corner of her eye. I was, as I always am, the last off the plane. I'd been frantic moments before because my chair had disappeared in the hands of other passengers and it took more time than you might imagine for me to calm down about that. But I was pushing my own chair and getting ready for the long push to the luggage area when she saw me.

It would have been comical if it wasn't so entirely odd yet entirely expected at the same time. Some people just panic when they see a wheelchair. It might happen a little more often with me because of my size, but I know from other wheelchair users that it's not just the size, it's definitely also the wheels. So, she saw me.

She flew out of her seat.

She left behind the person she had been serving who gawked after her as she fled her post.

She ran over to the chair behind the podium that was well off to the side.

She grabbed the chair and moved it, swiftly almost toppling it over.

She smiled at me, letting me know that the way was now clear.

I'm sometimes just dumbfounded when this happens. The chair wasn't in my way and even if it had been the podium was still there. It provided exactly zero help at all. There was no need for any action, for anything to be done. The pathway was wide and open.

She then, noticing I'm sure my lack of gratitude, returned to her post.

I pushed down to the large, long ramp, where I stopped and started laughing. It was comical. It was frenetic and meaningless and made no sense at all.

But, after having my chair nearly stolen, my heart gripped by panic, it was good to laugh.

So moving the chair, meaningless as it was, did actually help.

Odd, huh?

Monday, September 18, 2017

Again

Once again, and I know this is hard to believe, a fellow passenger attempted to steal my wheelchair from the door of the aircraft. My chair is old, well worn, and easily identifiable as a personal chair. It bares faint resemblance to the airport chairs. But just as I was told that my chair was up, a flight attendant noticed that it had disappeared and sent the gate agent fleeing after the people who took the chair. No one sat in it, no one has any idea why it was taken, but the fact is that it was. The fact also is that this is now the second time my chair has been taken from the door of the craft.

Second.

Last time it was when we landed in Buffalo and the security guards got the chair back as they were putting it in the trunk of their car. I kid you not. That time I got the chair back without the foot pedals, this time my chair was intact.

But I'm not.

I'm really not.

I find, and found, this incredibly traumatizing, so much so I can't even begin to tell you.

Every time I get on a plane I tell the purser about what happened in Buffalo, and now will add Vancouver to the list, and ask them to keep a sharp eye on my chair. That's what happened and because of that I have my chair.

I go into deep panic when I think about the 'what if's' ...

Don't people know that?

Why doesn't it matter?

The psychological pain that this causes me is deep and real. I don't know what I'd do. I'm fat, I fit my chair, it's not easily replaced.

Now I'm afraid of the next flight and the one after that ... I'll never feel safe again when traveling by plane.

Ever.

Again.

Sunday, September 17, 2017

Wait HERE

I couldn't believe how I was spoken to, any of the three times it happened.

First I was directed by an airport staff to wait in a section roped off for disabled people to wait to be pushed to their flights. I am able to push myself to the flight, I didn't need and hadn't asked for the service. Second, another staff directed me to wait off to the side while Joe took the bags to be dropped off. When I ignored the direction and started to go along with Joe the same woman stepped in front of me and commanded that I wait off to the side and let Joe take care of the bags. In all three instances, across both people, the tone was like irritated parent with a naughty, disobedient child.

I ignored all the commands, asked the woman who had stepped in front of me to move, and I went with Joe. She was really, really angry, as had been the woman who had commanded me to the roped off area , that I didn't listen.

Joe and I always go up to the baggage drop off together, we need to get a tag for my chair and I always have questions about seating. I'm part of this too.

I get that people may think that suggesting that I not participate in my life think that they are offering good advice. I don't get why they get angry when I make my own decision. In both cases I had at least 20 years on them. I clearly am of age.

The freedom that people have to speak to disabled people so disrespectfully is astonishing to me.

The presumption that people make that we need to be governed by their tone and their intent shocks me.

The audacity to treat disabled people so differently without noticing the difference and the prejudice makes me shake my head in disbelief.

All because they think they are being:

helpful

kind

benevolent.

As a general rule when you think you are doing someone a favour because of who they are ... you aren't.

As a general principle when you think you are needed by someone who is busy about their own lives, leave them the fuck alone.

As a general guideline when you open your mouth and disrespect falls out notice, apologize and for heavens sake LEARN.

Thursday, September 14, 2017

Here's an Idea

I was reading an article on line about a new tourist attraction in NYC that I'd like to go to see. As is typical, the reviewer never mentioned any form of accessibility. I know, I know, I know, it wasn't published on a disability blog, but it was a piece that was meant to inspire tourists to go. I made a comment stating that when a journalist reviews a venue, or show, or restaurant, there should be an expectation that they are writing for the whole of their readership and that a mention about wheelchair accessibility would be nice.

I received almost an immediate reply, "Call the venue."

Shortly later, "Yes, call the venue."

But the writers of these comments don't acknowledge that they don't have to. They don't ever have to think about whether or not they can get in. They don't see this as privilege but it is - to know that you will always automatically be given entry and given bathrooms you can use, is privilege. They are telling me that, even though the journalist could have written two lines about accessibility, I was going to have to track that information down. I was going to have to talk to some employee who isn't really sure what accessibility means and it takes so much time.

The suggestion to call the venue is kind of a way of saying 'shut up' and it's kind of a way of saying that my issue of entrance isn't worthy of a mention in an article. It's also a way of saying, 'don't be so lazy.' Disabled people have unlimited stores of energy and of time and of course we can spend that time waiting on hold to find out if we can get in and if we can pee in a venue.

Did the two people who left these comments think they were being helpful? That I had never thought about simply calling the venue? Were they seriously thinking that I would smack my head and say, 'of course, call the venue, freaking brilliant?'

I wrote the comment for the publication and for the author, I wanted them to think about it. I knew I'd get other comments but ... 'call the venue' ... as a comment tells me that they have no idea about how easy it is for them, and how much work that simple suggestion turns out to be.

And by the way, if I can't find accessibility on a restaurant ad, I don't go. If I can't find it on the ad for a show, I don't go. If they've put in a ramp but don't want me to know about it ... welcome is always chilly. So screw it.

Wednesday, September 13, 2017

Shorting Out

We were waiting to take off, sitting in the disabled area near the gate, with another couple. She used a really cool looking scooter and my interest in the fact that she had it at the gate started the conversation. I asked about her experiences with traveling with a scooter and that was it, we were off. They were a well established elderly couple recently retired, both had worked longer than 65 because both had wanted to.

Disability travel formed the basis of the conversation but little personal bits came out as we talked. It soon became clear to them that Joe was not my assistant but my husband and we knew that realization had hit them when they had cartoon short-outs in their eyes. We, at exactly the same time knew that we were talking to opponents of gay marriage and perhaps even gay rights.

But.

We were stuck, each of us, in conversation with the other. So, we all sucked up our surprise and discomfort, engaged civility and carried on. The tension soon eased as stories of travel and of non-disabled interference and also of their kindnesses flowed. Disabled travelers at airports have lots in common and lots to talk about and an abundance of stories to tell.

By the time we were head down to the plane to be seated we'd had a good jaw, even though for a time the jaws creaked with tension, and that the time had flown by. We thanked each other and they, gingerly, acknowledge Joe's and my relationship by hoping that we boys had a good trip.

I wonder if they will think about us when the topic comes up in the future, I wonder what story they will tell. I hope that our mutual decision to be civil with each other and to carry on talking about a topic we all were comfortable with will make a difference.

Contact sometimes does that.

I hope it does for us as well, I hope we learned that instead of shutting down, carrying on might be a good political strategy. It's one we wouldn't have had the strength to do when we were young, but now, we're a little older and a little more able to be subtle. We will be who we are, openly, and politely, even with people who's eyes short out when they think of us kissing.

Tuesday, September 12, 2017

The Tattoo

I am a gay man.

I am a disabled man.

I am these things all the time but these things aren't always forefront in my mind. Further, I don't often feel both identities rise in me simultaneously.

But.

It happens.

Joe and I were on a plane that had landed and we were waiting until everyone got off so that we could get ourselves organized and out. They plane unloaded as they all do from the front to the back. We watched as people got up and got their stuff from the overhead bins and then struggle to get everything down the narrow aisles. A typical scene.

The man sitting directly in front of Joe, a bulky guy, turned to stand up. He brought his left arm round to rest on the back of the seats in front of him and to help him leverage himself up. He had a tattoo on the underside of that arm. One word. In big, black, Gothic script.

The word.

A name.

The name?

Hitler.

I gasped. Joe looked shell shocked. We both are members of communities targeted by Hitler for death, the name itself is frightening.

He pulled himself up, seemingly unaware or uncaring of the effect that that tattoo would have on us or on anyone else. I glanced around the plane, saw the line up of people waiting, saw all the eyes on the arm, saw the faces of people as the name of his arm entered their consciousness.

Then, he was up and he was gone.

Before I could even formulate something to say.

He dominated the plane, he poisoned the air.

I wonder if that was his purpose.

And if so.

I wonder if he won.

Monday, September 11, 2017

Help That Hurts

After learning that I would not be able to take the shuttle over to pick up the rental car I had to go back across to the airport sidewalk to wait to be picked up. To do this I would have to push uphill across a busy street, but no worries there was a police officer directing traffic, and then up the curb cut on the other side. I checked it all out before pushing off and determined that the street was no problem but the curb cut on the other side was steep. Even so, I was confident and pushed on to the street when the traffic was stopped and headed over.

I made it across quickly and then was working hard at pushing myself up the curb cut. It was, as I predicted, hard pushing, but it also was, as I'd also predicted, doable. I was just nearing the top, I was bent right over and about to swing back when suddenly my chair was grabbed, from behind, and I was pushed, hard, up the rest of the way. This caused me to fly back in my chair, snapping my neck as I flew back and my arms flung out.

Just before swearing at the person who'd pushed me, the person who'd HURT me I noticed that it was the police officer. I said, because I had to say something, I was hurt and angry. That the push had hurt me and that he should always ask before pushing and that what he'd done was dangerous. I don't think he registered anything but the fact that I was ungrateful.

Disabled people have bodies. Our bodies react to being pushed, or startled, or both and often pain results. It's days later and my shoulders are still hurting and my neck complains when I lay down to sleep.

I don't know what to do about this. I don't know how to get heard. Those who read this blog are already sensitized to this issue but how do we get passed the barrier between disabled and non-disabled? Why can they always hear 'thank you,' they are in love with our gratitude, but they can't hear even a simple, reasonable request. DON'T FUCKING HURT ME.

Sunday, September 10, 2017

Proudly Accessible

I did ask. "Are the buses accessible that take us from the airport to the rental cars?" A beaming smile accompanies the word yes. When people are that happy about accessibility, for an odd reason, I get less trusting. "You know, with a ramp and everything?" Again a big smile and a yes. Okay.

We go out to catch the a bus that will get us our car. We arrive to a bus with a lot of stairs. "I was told that the service was accessible," I said. I was then told that they did have a bus that was accessible, they would just have to go get it and them come to get me. I asked how long this would take and she had no idea. Then it was suggested that I wait at the airport, she'd take Joe over and then he could drive back and get me. This is the plan we settle on.

Let's get something clear.

Accessible isn't having one 'special bus' it's being able to access what you need like everyone else does. I didn't mind the wait, I didn't mind being left behind waiting to be picked up. I did mind not being told the truth. I did mind that 'accessible' is often simply not accessible. What's the difference between, in their mind, between the promised service and the service I received?

I don't know but it's a difference they are proud of!!

Saturday, September 09, 2017

Omaha's Welcome

When we landed in Omaha, I was greeted by a young man who was there to assist me in getting from the plane to the luggage area. As you all know I've been working do become completely independent in airports and explained to him, once I'd gotten myself to the top of the arrivals ramp that I thought I'd be okay. Now, I made this decision based on the fact that he had told me that it wasn't far to the luggage area, but that there was a fairly long ramp between where I was and where I wanted to go. I asked him if it was a carpeted ramp and he told me that it was. I took a second and then said, "I\m going to give it a go on my own." "Perfect," he responded, then asked, "may I walk along with you as I'm headed that way myself." I said sure.

I pushed along as he told us about Omaha, he's incredibly proud of his city. We listened to him and followed him as he walked quickly and knew where he was going. We hit the bottom of the ramp. It was steep, it was very long, and the carpet was fairly thick. I pushed up and was stuck. There was no way I could get up by myself. No way at all. I told him that I was going to need his help and he said, "Oh, sure, no problem," He was young and strong and had me at the top of the ramp in no time. He was still chatting, he didn't even become winded with the effort.

Once at the top, before I could ask him to, he let go of me. The transition between his help and my independence was completely seamless. He walked a little further with us, and then wished us well. I made it to the luggage area in short order and we were soon ready to go.

I marveled at this kids ability to provide help in such a non intrusive way. He didn't argue with me about my decision, he must have known the ramp, really a hill, would have been difficult for me to do, he just accepted my decision and made himself available if he was needed. He had no need to force his will or his opinion into my decision making process. When it turned out I did need his help he gave no hint of 'I told you so,' he just helped.

Amazing.

Amazing way to start my visit to Omaha where I will be speaking to direct support professionals. The best of that profession also happen to be the best at just being human.

Thanks to whoever hired this guy, good decision!

Monday, September 04, 2017

LaboUr Day

In Canada, like the UK and other countries in the Commonwealth, we spell 'labour' with a 'u' ... and today, in particular, I think that's so appropriate. I was talking to an elderly woman yesterday who was really excited about her Labour Day plans, she will be taken by her aide to a family gathering. She told me that she resisted getting a personal assistant because she didn't want to admit to needing help. But she says she is now as mobile and active as she was in her 30s.

As I left the conversation I thought a lot about direct support professionals. I thought of those who helped me in the early days of my disability. I thought about access and community and options and freedom. I thought about a work force whose impact changes the world.

Of course labour has a 'u' in it.

U make it possible for someone to take part in the everyday tasks of living. This may seem mundane to some but it's not. I lived in an inaccessible apartment for 10 years and now, in a home I can live in, I can do the dishes. I can't tell you how that feels. But I can tell you providing service so that someone can do what they need to do changes their world.

U make it possible for someone to use their own voice. Yesterday we were in a movie theatre and a direct support professional was assisting a young woman to order popcorn before going to the movie. She spoke softly and you, a Direct Support Professional, created space for her to be able to speak for herself. It was difficult and you had to be gently assertive with those behind in line, but you did it. One of the most amazing acts of direct support I've seen. That's why there's the world 'professional' in Direct Support Professional. You were incredibly gifted.

U change the community by being there supporting people who have been denied community. Every time you go out with someone you reclaim ground that was once lost. People lived in shadows, in basements, in attics, in institutions, locked away from the eyes of others. You defy prejudice and you confront bias just by being with, supporting carefully and treating someone, once cast away, as a valuable person. It's a powerfully political act that will eventually reclaim your part of the world for people with disabilities.

Labour has a 'u' in it.

And U are at work today.

And U will make a difference today.

And U ensure that dreams are achieved.

Of course LABOUR has a 'u' ... of course it does.

Sunday, September 03, 2017

Korean Cauliflower (the restaurant, part 2)

We were seated on the patio. The only place that could fit the 6 of us comfortably was the tall table just outside the door to the patio. We ensured that I was pulled into the table such that the door could open easily and that people could get passed me without difficult we did that.

Let me say again: we did that.

Then it all began. Our orders were taken and water was brought for all of us. This was a work luncheon so water was as hard core as anyone went. We chatted until the food came. One of the waitstaff was really, really, annoyed that I was where I was because she couldn't walk behind me to hand the plate of food to the person it was designated for, so she apologized. With an indication that I was in the way, she apologized for not being able to get around to the diner.

Now, we're all together. We all know and respect each other. We've worked on a project for a year and a half. They all work in the disability industry. The waitstaff didn't need to know the details and didn't of course, but she knew one important one. We were all together. We were part of a group. I was in that group. They get it. But instead of seeing the 'us-ness' of we who sat around the table, she chose to indicate that one of us, me, was out of place and taking too much space.

Then for the rest of lunch I discovered that I was a kind of 'asshole' test. Those who came and passed through the door without incident or without notice were truly fine, decent people. Those who exaggerated their movements to make it such that I was in their way, asshole. These people bumped into my chair, nearly fell over the chair, loudly complained about the chair. These people continued the message that I was not welcome. I was in the way. I was a nuisance.

Messages.

Messages.

Messages.

Exclusion is the only other option when inclusion is discarded. These are the people whose attitudes built institutions. Their behaviour chants: Congregate! Segregate! Persecute! Destroy.

But let me tell you what I think about that meal. "They don't serve Korean Cauliflower from institutional kitchens."

And I'm going to fucking keep it that way.