My Negligee

So.

I went to see the doctor.

The receptionist, a woman we've known for a long time, seemed to sense my anxiety and assured me, after I stopped to book in, that the Doctor I was seeing was a good guy. That helped. Like my own doctor, this guy was on time with my appointment. That was one of the first things I noticed when I came to these offices the first time, wait time for a booked appointment is never more than 5, or rarely 10, minutes past the time set.

He guided me down to his office and scooted by to move a chair to ensure I had enough room. I was able to take a moment to settle and gather my thoughts after he asked me why I was there. "There's so much back story," I said, "give me a second to pare it down." He waited. Then I answered his question.

One of the things I knew was going to happen was that I was going to have to drop my pants and bare myself a little. This makes me really uncomfortable. I do what I have always done. I pulled out a nightshirt, a blue, used to be flannel, one. I told the doctor that I needed to put my negligee on first. The doctor said that I needn't worry, that he's been around, "I tell people that if I see something I haven't seen before, I shoot it." I laughed and said, "Well, then I'm definitely putting this on, I don't want to leave here with gunshot wounds." I popped the night shirt over my head. Let it fall over my clothing. Then dropped my pants so he could see my lower legs. They were the issue here and the banter had somehow just reduced my sense of anxiety.

As he handed me my prescription, which he did after talking about the way forward and what we needed to do, I felt that I could trust the treatment plan. I had been involved, respected and heard. That's all I really ask from a doctor, or indeed, anyone.

I told him that I had been worried sick about seeing him and that past experiences with medical types had left me a bit fearful about seeing someone new, someone I don't know.

This was nice.

He didn't brush the compliment away. He took my word that my experiences with the medical world had left me a bit traumatized and that my fear was real.

He let me thank him and in doing so acknowledged, without question, that it was worth something.

That I was worth something.

So, I'm sick, but I'm going to get better.

That's the news for now.

Tomorrow's Appointment

I'm a little scared.

I've not been feeling well.

And my doctor is away right now.

The clinic I go to is great, the woman who books our appointments asked if I would like to see a different doctor on their team. Inside I shouted 'NO, I WANT MY DOCTOR TO COME HOME.' but outside I said, 'sure, of course.' I have an appointment for tomorrow.

My doctor sees and treats me like I am fully human, he speaks respectfully to me, listens to my answers carefully. He has made the experience of receiving health care feel like it's a collaborative venture. On top of that, he just knows a lot of stuff and stays up to date on research.

I trust him

I trust him because both Joe and I feel that we get really good health care from him. Never better.

I trust him because I don't expect to be humiliated when I see him.

It took a long time to find this guy.

But now, because I'm not feeling well, I have to roll into a room with a doctor I don't know and I feel that I am at risk. Will he be able to see me, hear me, or will he be deep in conversation with prejudice and preconception? Will my voice be able to push itself into the visit?

I don't know.

And that scares me.

A lot.

Pride on the March

Photo description: Vita's contingent in the Disability Pride March, in front of Queen's Park in Toronto. Group stands behind and beside the Vita Banner.

The 8th Annual Toronto Disability Pride March happened yesterday and I'd been looking forward to it both personally and professionally. I had never been in the Toronto parade before and we began planning to go to it the moment it was announced. We made sure that Ruby and Sadie would be able to come, we believe that these kinds of experiences are important for them to be part of - and so do their parents. So we were all set. At work Vita's self advocacy group was also organizing to take part in the parade for the first time. To say that I was surrounded by planning and excitement was an understatement.

We ended up arriving just a few minutes before the speakers started in front of Queen's Park, Ontario's legislative building. Ran into a few people we knew and met some people I knew just through this blog or through Facebook. Then I saw the Vita group and we all went over to meet up and get our picture taken. Disability Pride is one of the things we promote at Vita and there was a fairly large group of us. 

Once the march actually began it felt good to be taking to the streets to make it clear, make it known, that we are a people, a people to be reckoned with. I wore my yellow shirt to promote my own visibility. See me. Go ahead and see me. I won't let shame put me in mourning, I will not wear black. I don't think I was alone in this. I saw a young man with a white and pink wheelchair. I saw a woman with brightly coloured hair. We were VISIBLE.

Shame built buildings to house us away from others.

Shame built schools to give us a grudging education.

Shame built a world where stairs and stares aim to keep us in by keeping us out.

But shame had no place in this march. Some chanted as we went down the street, others walked in silence. Me, I was one that rolled in contemplation. I had no message to those on the sidewalks that wasn't writ large by my presence. I AM HERE.

Pride is the antidote to more than shame.

Pride is the antidote to more than internalized ableism.

Pride is the antidote to more than the dismissal of our personhood.

Pride is the only pathway to a future of any worth.

And that's where I want to be.

And that's where I was.

Her Face

Joe and I went into a grocery store on the way home from work and zipped around enjoying ourselves. After a trip away, this kind of ordinary thing signals in a meaningful way that we are home. We got a fair lot of groceries and went to find a check out and found, again, that the two express (8 or less) were accessible but that none of the others were.

Tired of this king of thing, I just decided that accessibility trumped the 8. We went to get in line. The woman saw me and the cart and said, "Go over to four." I told her I couldn't be served at 4. She loudly demands and points across the store to aisle 4. I told her again I couldn't go there, I said that I needed an accessible aisle to get my groceries. She looked at me with disgust and in that moment I knew this wasn't a barrier issue with the store, even if that's how this started, her face was the face of bigotry. She had no intention of serving someone like me at her till.

Another clerk comes along, opens the other express aisle which is also the only other accessible aisle, and she serves us quickly, efficiently and in a friendly manner. I mentioned to her what happened and she said that she had just come along and seen that there had been an incident and that she just wanted to fix it. I asked to speak to the store manager.

We've spoke before.

He's made promises before.

Why do I bother?

But I do.

He had taken the concerns I'd raised to a meeting.

Rah him.

I left.

All of the stuff about the physical barriers and the discussion abut making it possible for disabled people to shop, seriously, still talking about really basic, simple rights, was finished with in my head.

But her face.

The one who denied me service.

The look of hatred she had on her face.

The look of outright prejudice.

Stays with me.

That she felt free to do that scares me. That her hatred had been somehow legitimized. That she didn't worry for a second about the fact that she was doing a job serving the public and my complaint about her behaivour had been made.

She felt safe there.

Which means that disabled people are not.

laughing

He laughed at me. He tried not to, but he actually laughed at me. I knew he had been working to take me seriously but then he just started laughing. He was the manager of a hotel we stayed at on our trip. We were in the hotel for a couple of days and I was really annoyed by the inaccessibility of the services. The room was fine but the rest of the hotel was not.

The gym, which I wanted to use, which is important for me to use when I travel, was completely inaccessible. It was beautiful, but I could only get on a landing that lead to stairs, lots of stairs, in every direction. It had clearly been renovated, it was packed with equipment, but the idea of access must have been given a pass because there was simply no way I could get in, there was no second entrance, all I could do was watch others do what I wanted to do myself.

The business center, which I wanted to use to print some documents for the lecture the next day, was inaccessible. I had been in this hotel in the past and the old center was fully accessible but the new renovated one was not. There was no way a person using any kind of mobility device would have been able to negotiate that space. They had had an accessible space and renovated the accessibility away.

The manager was trying to listen to me talk to him about these things and he did the 'it's an old building' but I stopped that quick because, while it might have been an old building the former business center was renovated to become inaccessible ... that's moving towards, not away from, exclusion. The gym had clearly been renovated, the building was old but none of these inaccessible items were.

I asked him why the hotel's website didn't warn disabled travelers that the hotel didn't offer full services to people with disabilities. And then, here's where he began to laugh, I said, "Why am I paying full price for a room in a hotel where I have fewer options than non-disabled people? Why should disabled people foot the bill for non-disabled people? We buy the space and they get the use of it." He found that hilarious.

Really funny.

I wasn't laughing.

It ended with him saying (can you predict?) that he would take my concerns to senior management and they would all talk about it.

Yeah.

That helps.

Now, seriously this is true, I started laughin.

The Ramp

Years ago, when I first became a wheelchair user, Heathrow airport was a frightening place to fly into. We'd have asked for assistance to get from the gate to luggage and out and many times we sat up to 40 minutes waiting for that help to arrive. The terminal has long corridors and long ramps, very long ramps, which made it difficult even for those pushing me. 

Heathrow was one of the reasons I decided to increase my upper body strength and decrease my need for assistance. I didn't want the long waits and I didn't want the angry service I received after help would arrive and see me, at my weight, in my chair. It was unpleasant and sometimes a little scary. So, I began trying to increase the strength in my arms and shoulders, I worked on my pushing technique, I disallowed Joe from helping me, unless I asked, even when I was struggling.

A long while later, I do have the upper body strength to push myself around and I've got a new lighter chair which makes distances in terminals or malls almost irrelevant. It's nice to feel that I was able to make some changes and work some muscles that would change my experience of the chair.

So on our flight back from London I had been shopping in duty free when Joe came and told me that our gate was now on the board and we had to go a very long way. At a normal walking pace they predicted a 15 minute walk. Ok, let's go. We found the path and were on our way. Joe was walking quickly and I slowed to keep pace with him.

That is, until we came to a very long down ramp, I said goodbye and flew down the ramp. I wanted the speed of the descent to carry me some of the way back up the ramp on the other side. It did, but then I had to take over. Joe was still way behind me but I kept going, I know my pace was very much slowed by the incline that I was attempting. I was feeling good about it, yeah it was long, but I'd done longer. And steeper. 

I felt my body working, I'd switched my push to a climbing push and I was slowly but steadily making my way up the ramp. I was breathing hard, this was real work, not gym work, real work. I was about half way up when it happened. I hadn't paid attention, I was focused just on getting up the ramp. Someone came from behind and grabbed my chair and began to push. I felt immediately out of control of the chair and I called out for him to stop. He told me he didn't mind. "WELL I DO!" I responded and he let go mumbled an apology and took off.

We got to the gate and boarded the plane. Once again, Heathrow was taken from me. He pushed me about three feet, that's all, but he took the whole challenge away from me. He's now part of my story. I don't want him in my story.

I want to author the story of my own victories and failures. I don't want random strangers to become part of my personal narrative. I'll never be able to tell this story wiithout him. I had wanted to do this, especially the big ramp, on my own. I had wanted to remind myself that I have the strength to take on what I never could have considered a year or so ago.

But he's in my story.

My story is no longer mine.

The assaultive nature of having one's chair grabbed is one thing. The theft of narrative is another.

I don't know which is worse.

Grandma

It is said we all die two deaths. One is the physical one, and the other comes on the last day that someone ever thinks of you or speaks of you or remembers who you are. When I first read this it struck me as inspiration to live a life worthy of memory, worthy of being tenderly held in the minds and hearts of others. But what I have found is a deep understanding of how people who have made an impact in my life are carried on, and on, and on.

Two days ago we were setting up for me to do two workshops for people with intellectual disabilities in Glasgow. The last think I was thinking about was home and the family of my youth. But, I rolled over to the treat table, before others arrived, just to see what was there. They had these little donuts, chocolate covered, and they were so cute. Wee tiny donuts. I took one.

Back at the presentation table I popped it in my mouth. And the flavour of the donut immediately threw me back in time, to when I was a child, when I was in Grandma Hingsburger's house. She made donuts. No chocolate covered ones, just plain donuts and they tasted just the same as the one I just had. Immediately she was alive to me, immediately I felt the warmth of her presence and the security of being with someone who loved me.

I loved Grandma Hingsburger.

Deeply.

I had told Joe that for a couple of days I was really battled anxiety. I've be plagued with it all my life. It had eaten some of the joy and fun that we were having on the weekend. It placed itself in the center of my chest and it refused to move. I knew they was no reason for it, but things like this don't respond to logic.

But it couldn't stand up to Grandma, not for a second. As I turned to my notes, as I ready myself, as I felt Grandma recede in my mind as work needed to come to the fore, it was gone.

She lived again.

This is the power of love, it allows you to live on and on and on in someone's heart. I'm glad she has residence in my heart, I'm glad that I had her and I'm glad that I have her in my life.

I owe her for her love and for her creating a safe place for me to be, and I love her for it. Memory is little enough payment for that, she is a light load to carry.

Love lives long.

JUST TRYING

The day hadn't started and I'd offended someone. Sometimes the hardest part of travel is that you have to be out doing what you usually do at home. Breakfasts, lunches, dinners ... hanging around while the room is being cleaned ... that kind of stuff. As a result we have hundreds more interactions than we typically would and, invariably, disability will combine with an assumption of need resulting in awkward situations.

We had come down for breakfast, a bit bleary-eyed, first day of a weekend off. I rolled ahead of Joe and we chose a place to sit at and was about to pull out the chair and shove it off to the side when a server came and said, "I'll find you a good spot," and headed, expecting us to follow, off to the carpeted area of the breakfast room. I'd chosen to sit where the flooring was rollable, I'd chosen a place where I wanted to sit, I'd asked Joe and he too had agreed on where we wanted to sit. We didn't follow as she expected us to, when she became aware of this, she turned, put her hands on her hips like we were errant children and said, clearly to me, "I'll find you a good spot over here."

I said, "I am capable of deciding where I want to sit."

She said, "I'M JUST TRYING TO BE HELPFUL."

I said, "I don't need help deciding where to sit."

For those bursting to say something to me as you read this, we'd slept late, there was only one other table taken in the whole breakfast area, she wasn't guiding us because of need for space. It was solely a need to take over my capacity for choice making and for the feeling of helpfulness.

We didn't sit where she wanted.

She was angry right the way through breakfast.

Then comes lunch. We go to a Mexican restaurant and we are guided to a table and, without asking me what I'd prefer and chair is pulled out and space is made. Joe and I have been together a lot of years and we live our life in patterns. The way the table was not set ran counter to how we sit at tables. This may sound silly but long-term relationships result in long-term habits and those habits turn in traditions and expectations. Joe pulled the chair back, and sat down and I pulled out the chair from 'my space at the table,' and sat down.

Once again the waiter looked at us, hands on hips, like we were doddery old men who needed to be indulged.

My voice. My choice. My will. My decision.

It's fairly simple.

Except it's not.

Bravery

Again with the toilet.

We'd done our shopping. I stayed with our bags while Joe went off to pee, then he came and waited while I went. Alone. Independently. Because I don't need help doing this.

I got to the door of the accessible loo and pulled it open, suddenly right behind me, a woman is holding the door open. I don't need someone to hold open the door. It's silly but I get embarrassed, I'm an adult man heading into use the toilet and someone I don't know is forcing assistance on me. I told her that I was fine. She told me that she'd close the door behind me once I was in. I told her that she needn't worry, I can do that all by myself.

She surprises me by letting go of the door. She watches to make sure she isn't needed. Again, I'm embarrassed, she's watching me get into the bathroom, turn my chair around and then reach to close the door. As the door is closing, she grabs it again, stopping the door from moving and says with deep meaning and a warm smile, "You lot are so brave." She lets go and the door closes.

I sat there, we're already in the bathroom, I might as well stay there a bit, and thought about what she said. I don't think closing your own bathroom door fits into the category of heroics for which bravery can be properly assigned. I really don't. I don't see how it can be in anyone's mind. We live in a day where heroics are often seen by people who resist the ugliness of hatred and bias and bigotry, taking a poo behind a door you've closed just doesn't seem anywhere near an apt comparison.

But then I thought. Maybe bravery does apply. Coming out and being out as a disabled person in a society that either demeans, dismisses or deifies our presence does take a certain amount of, if not bravery, then certainly verve. I admit there have been days when I simply couldn't go out because I didn't want to deal with what would inevitably happen. They are rare, but they are there. The wheelchair is a magnet for social inappropriateness and I'm a fairly large target.

On the way out assistance was forced on me again, I said nothing, except 'thank you' because I simply wanted to get out, get back to Joe and head on out. I didn't have the strength to fight two battles the same day. I let her hold a door that didn't need holding.

Sorry.

The Key to Unlocked Doors

As stories regarding disability often do, it starts with needing to use the loo. We are in a huge mall and we follow the signs to where we are promised will be toilets for 'disabled patrons'. When we get there we are confronted with three options provided for customers to pee, poo, or do double duty. There is the women's room, the men's room and then the disabled and family toilets. The only trouble is that the disabled toilets are locked and to gain access a sign tells us to either see an attendant or call a particular number and an attendant will be sent. I haven't figured out how to dial phone numbers here in the UK so, in desperation I ask a woman headed into the bathroom if she could help me and call someone so I could, let's just say, pee. She does. Someone will come.

Then a fellow comes along who is clearly the attendant so I ask him to unlock the door. He gets his key. I ask him why disabled people are locked out of the bathrooms. I don't understand why everyone else gets to just walk in but I have to make a phone call. I'm told that I could buy a key that would give me access all across the country. You lock disabled people out of bathrooms across the entire country? I ask. He says, You are not locked out of the bathroom.

And here gaslighting begins.

I am locked out of the bathroom.

No you are not.

There's the door, it's locked, I'm out here. I'm locked out.

No you are not locked out. You just need to ask an attendant.

There was no attendant, I had to call ... because I was locked out.

No you are not locked out, I am the attendant, I have the key..

But you weren't here.

I am here now.

So, back to my question why do you lock disabled people out of toilets?

He's frustrated now. YOU ARE NOT LOCKED OUT OF THE TOILET.

YES I AM. THE DOOR IS LOCKED.

I am here to open it for you.

But you weren't here when I needed it.

WE DO NOT LOCK THE DISABLED OUT OF TOILETS.

YES, YOU DO.

Here's the thing ... I still haven't gone pee.

I ask and he unlocks the door.

I go in and finish the job I had wanted to do.

I come out.

Just before leaving someone arrives.

She is waving a key in the air, Who called for an attendant.

It's so frustrating when people deny the experience of having a disability. I was to any observer around, clearly locked out of the bathroom, but I was consistently told that I was not. Later I was told that the toilets are locked, but not to keep me out, but to keep the non-disabled from using them. So, I was told, in effect it's non-disabled people who are locked out. But, I protest, I'm locked out too. A head shakes at what is deemed my inability to understand that I'm not locked out of loos all over the country.

We bought a key.

Bursting Aloneness

Instant validation. Sudden connection. Aloneness disappears. So much can happen, in an instant, when disabled people and their allies share stories. When we got off the plane, I handed Joe the cushion, which we'd carried on board and he put it in place. Beside him was a woman who was industriously and efficiently reassembling the wheelchair her son used. He stood, cautiously and carefully, braced against a wall. Once she was done, she helped him get into his chair and started off. We followed.

When we got to the elevator there was room for two wheelchair users and two standuppers. Her husband and youngest son said they'd meet her at the top and then they dashed off towards the stairs. When we were riding up, in an elevator's version of a stroll, I asked them what was the worst thing that had happened to them while traveling with and in a wheelchair.

"Having the chair stolen at the gate," was the response.

"Us too!!!"

This has happened to us twice, once in Buffalo and once in Vancouver. We find that people either don't believe it or explain it away - they probably thought that it was an airport chair. Explaining away the experience, that my chair was stolen, has silenced me from talking about it. Even though, in the first case, the people who took it were caught with it, I had alerted security immediately, putting it in their car trunk. Even though, in the second case, the person was caught at the top of the ramp claimed ownership of the chair and attempted to wrestle it back from the gate attendant, I'm told that they really didn't mean to, it was an accident.

But here, someone who's had the same experience. It was explained to us that they disassemble the chair and wrap it with tape to send it down below, in order to ensure that the will arrive to their chair. I felt like I could talk about our experiences and still breathe, knowing that I won't have it tut tutted, or be accused of being so negative, or have someone explain that it was just a mistake. 

This is why, or one of the reasons why, I need the disability community, why it's important to me to connect with my own community, I need not to be alone and I need to be able to freely share my stories knowing that they will be heard and understood. 

I do not wish to offend non-disabled readers, I appreciate you being here, reading these words, I really do, This blog wouldn't exist without you. All I'm saying is that sharing lived experience, either as a disabled person or an ally, really matters.

Really. Matters.

He Backed Up

OK so I flew off the handle.

I haven't gotten so pissed off so quickly in such a long time.

I was asking someone about the disabled parking to see if we were in the right part of the parking lot, the part that belonged to their business, and if not, what did we miss. It turned out that the answer was that we were in the right spot and that yes, the disabled parking was furtherest from the business. I expressed surprise.

I got a look.

The a slight eye roll.

Then, "If I were you I would have just chosen a parking space closer to the door."

"If I were you??? IF I WERE YOU???!!!" I didn't say this, I chatting with you right now, I'll get to the part about what I said later. But can you imagine that this non-disabled, young, man has any idea what it is to be a fat, 65ish, disabled man? Can you imagine what experience he has had with parking and accessibility and wheelchairs and space? What the hell gives him the gall to even attempt to get into my mindset and understand my issues? He's not even old enough yet to understand that 'empathy' is an action not an emotion. WTACTUALF?????

He knew he'd said something wrong, that or I'd just gone into cardiac arrest. It took me a second to get my breath back after having been verbally sucker punched. "How dare you. How DARE you tell me how to be disabled. How DARE you think you have any idea about what accessibility feels like, let alone what it is."

I pushed forward.

He stepped back.

I had grown several sizes larger in those few moments.

I explained to him about space and asked him why he thought that disabled parking bays are wider than regular ones, you know like the one that he would have driven to had he been lucky enough to be me. By the time I finished, I was tired. Just tired. Tired.

Ablesplaining is something I simply can't bear.

Don't ask me to.

Because I just won't.

My Fate Mattered

It was late when we checked into the hotel. We ran into a lot of delays and I'm delighted to say that none of them were disability related, we simply shared the frustrations of the crowds. That may sound odd but sometimes I'm glad that its not about me, my chair or what I'm able to do.

After checking in the hotel clerk came round to where I was sitting in my chair, he knelt down, clipboard in hand, and said he'd like, if I wished, to go over a form with him. It was an emergency procedures form that they fill out with people who have all kinds of disabilities. It had questions that allowed me to direct them with what exactly to do should there be an emergency.

I agree and together we went through the form, it only took four or five minutes to complete. None of the questions were embarrassing or inappropriate, they all focused to the task of keeping me safe.

When we were done I told him that I appreciated the hotel's approach to my safety and that, though he might not believe it, the simple exercise made me feel safer.

In truth it made me feel safer for two reasons. First they had a plan that I had been involved in creating. I wasn't just a random guest in a dusty binder on a seldom read page about safety and accessibility, this was a live document. Second, that they did this at all tells me something about how they view guests with disabilities and how they value us as people - not just anonymous guests.

So I slept well.

Probably due to exhaustion but, maybe I felt just a wee bit safer.