Monday, October 23, 2017

Joe, The Email, And What I Have to Say

Today is Joe's 65th birthday. We have been together for all but 16 of those years. Our lives have intertwined in ways both planned and unexpected. He has earned every grey hair that he has. His work often goes unacknowledged but his commitment to the cause of disability rights and civil liberties is unrivaled. He is, frankly, an amazing man.

What I'm going to write about today stems from a place of some anger, however. I received, yesterday, an email. The content is unsurprising, I've gotten this before, but maybe because of Joe's birthday, maybe because of our years together, it struck me twice as fast and three times as hard. The email stated that I should 'stick to disability' in my keynote presentations because people have no choice but to be there and when I mention Joe, as my husband, I am making a statement that makes some people uncomfortable. The writer said she found it difficult to hear my message because of the white noise of my sexuality getting in the way.

I want you all, and her in particular, to know that Joe and I have long talked about my lectures and about our joint decision to mention our relationship, long before marriage was even thought about as a possibility, in every talk that I give. Every. One. Joe fears that someday someone will pull out a gun, I know that's a possibility but I think a small one. Our decision was made precisely because we wanted it to be clear, to any other LGBT person in the room that they weren't alone. We both know what it is to be the only one in a room, we both know how lonely that can be. I know specifically that in our field agencies have a dreadful history regarding LGBT people often attempting to purge us from the workforce. This still happens.

Because of what I do, I hear a lot of keynotes and a lot of session presentations. I have not kept data but I'm willing to posit that nearly 100 percent of heterosexual presenters mention their wives, husbands, boyfriends or girlfriends. They do it casually as if they don't notice the privilege they have, in that moment, to not fear the reaction. The blithe way they don't seem to realize that they won't get an email telling them to shut up about their lives and their loves. They also don't know that they are signaling to every LGBT person in the room that their relationships are allowed air time, that their relationships expect to be met with welcome, that their relationships are valued. I'd love one day to hear a heterosexual presenter say something like, "I know I've mentioned my husband a couple of times and I want you to know that I am aware that there are people here who are not free to speak of their loves or their lives and I acknowledge you and I support you in your fight for equal time." But I'll wait a long time I suspect.

Privilege is like that. It doesn't notice itself. It doesn't acknowledge itself. But it loves the freedom and power it has.

So, I will continue to mention Joe here on this blog, there in my lectures and anywhere I wish. If that makes you uncomfortable, you need to look at yourself and your attitudes not request of me, silence.

I love Joe.

He loves me.

I'd love those two statements to be purely personal without a hit of politics. But, for now at least, they are both. I know this because I still have LGBT people come up to me after a lecture and wait until they are sure their comment won't be over heard and they will whisper, "Thank you for being openly who you are," and many walk away quickly wiping tears.

It can be hard being so alone.

In a room full of people who say they care for people.

In a room full of people who say they believe in inclusion.

In a room full of people who say they believe that all means all.

In a room full of people who trim the edges off all and for whom inclusion for some and exclusion for others.

So, it's Joe's 65th birthday. And I get to spend it with him. I get to continue living the life we have together. I get to sit quietly with him, laugh uproariously with him and I get to continue to make the same silly joke with him that we've been making for 49 years.

Yes. You may have heterosexual privilege.

But I have the privilege of living with and loving Joe.

You have no idea how much better that is.

Happy Birthday Joe!

Sunday, October 22, 2017

Joe Went Swimming

Joe arrived back in the hotel room saying he'd had a good swim. He hopped in the shower and came out dressed in his housecoat. There was a story that he wanted to tell me. I turned to listen and I saw his face and knew immediately that the story he had to share was important to him. I waited.

He said that when he got down to the pool the first thing he noticed was a bright red wheelchair. It was designed to be pushed and the seating had been specially fit. It was parked, waiting, off to the side of the pool down where the top of the ramp into the pool was located. In the pool was a young man of about 40 and with him was his daughter a woman with Down Sydrome, a physical disability, and a pretty significant intellectual disability. He was holding her up, helping her float, and walking around the pool. She was making happy noises and slapping the top of the water with one hand.

Joe isn't someone who jumps into a pool. He likes the ramp because it allows him to slowly adjust to the pools temperature, he finds most hotel pools cool. His trip took him by father and daughter. Joe said hello to both, the father, a little surprised that both had been addressed, introduced himself and his daughter and Joe did the same. Then, Joe began swimming. He's a lane swimmer and he found a lane, marked it with invisible lines and began to swim.

At the deep end, he stopped to catch his breath. The door opened and a small group entered, 5 adults and 3 children. The kids headed towards the pool, ready to jump in when one of the parents spotted father and daughter. A sharp cry, "Stop, get back here." The dad, with his kid, stopped and saw them all gather together and there was such pain on his face when he knew that he and his daughter were the subject of discussion. Do they want to get in the water with someone like her, someone so different. He turned and said something to his daughter and continued walking around the pool, holding her up.

After a few minutes they decided to use the pool anyways. The kids were excited and leapt in. It took a few minutes but soon everyone was in and everyone was having a good time. The child who was different was no longer noticed, no longer a subject of concern.

That a father loves his child, that a father provides amazing and exceptional support to his child, is not noteworthy to me. Parents love their kids. Parents of kids with disabilities do the same and I refuse to believe that it's 'inspirational' to love a child. What struck me, from Joe's story, was that the father, seeing the discomfort of others to his child being in the pool, didn't cede space, didn't pack up and leave, he understood that his daughter wasn't done. She was still slapping at the water and making happy noises. He stayed because she wasn't done.

Perhaps it was that the noise in the pool exploded at the entrance of the parents and children, but about 5 minutes later, she began to squirm in his arms and he leaned down, kissed her on the forehead and carried her out of the pool and wrapped her in a towel before setting her in the chair.

In the midst of prejudice he had held her up.

In the midst of discomfort he had held her up.

In the midst of prejudice he had held her up.

That dad's willingness to let his daughter's desires, not the reaction of others, determine what happens next, makes him a powerful advocate for social change. Being where you belong before people understand that the belonging belongs to you, that's an act of rebellion.

She is safe in his hands.

May she be safe for the rest of her life in the hands of others.

Saturday, October 21, 2017

Brussels Sprouts

Last evening I made one of our family recipes. We have several of these. Recipes that were developed based on opening the fridge and seeing what was there and, from that, throwing a meal together. Sometimes a magic happens and the meal joins the list of our comfort foods. Food that tells us we're home, we're safe and we're together. We've been on the road a fair bit and we have a fair bit to go, on the flight home I had a craving for what we call 'cabbage roll casserole' even though it's made with Brussels sprouts rather than cabbage and even though it's layered not rolled. We've been making this since someone gave us a big bag of sprouts nearly thirty years ago.

It's a bit of a complicated recipe, simple to make, but it involves chopping and steaming and frying and grating before assembling. I started by trimming the sprouts and then I was off. We have this several times a year and the recipe is firmly in my head so there was no need to checking or reviewing there was just doing. I got into the rhythm of the process and flew around the kitchen getting what I needed, getting things out of the fridge and then putting back what was no longer needed. At the same time we needed to make a different meal for the girls, open faced grilled cheese, another home grown recipe, and that needed to be done.

Over the course of cooking, first Joe, them Marissa, then Ruby and then Sadie joined in, each doing different parts of the preparation. It was organized pandemonium and I was right in the mix with everyone else participating as an equal member. An equal member is a necessary member, someone who's work made the end result possible. All of us had our roles and our individual tasks, and we all did them.

Somewhere in there I realized that I was having fun. The bunch of us in the kitchen, the bunch of us talking, laughing and working. Ruby and Sadie came up with an experiment they wanted to try with their sandwiches, to see which way of putting on the cheese would taste best, so they did that, loving that their suggestion was greeted with a ' great idea' (because it was) and then just doing it. 

This is probably a very ordinary scene for most of you. But for me, it's still extraordinary. I'm still getting used to the gifts of living in an accessible space. The fact that I can use my kitchen means more than being able to prepare food, it means that I can be a part of something bigger, something better, something meaningful. It means that my belonging isn't just a conceptual idea it's a physical reality. It means that when I am remembered by the girls in the future, they will remember me, now, as someone who worked beside them, rather than someone who sat in the doorway to the kitchen and couldn't join in.

Accessibility is more than just a space to use, it's about being able to live freely. There was a moment, last night, when the girls were on either side of me determining the ketchup, deli slice, cheese ratio, when my soul felt deep gratitude for finding, after 11 years of being an outsider in my own place, home.

Friday, October 20, 2017

It Doesn't Care

I'd just finished a really good breakfast at one of the eateries in the airport and were preparing to get up and go to the gate. I asked Joe if he wouldn't mind, I always finish first, if I rolled back to the accessible washroom to ensure the tanks were dry before getting on the wee plane. He just happily continued on with his breakfast then as I took off.

I had just come to the door of the accessible room, one of those separate from either the men's or women's bathroom, when the door opened. A non-disabled man stepped out of the washroom and as soon as he saw me he was full of apologies. But none was necessary, he was a transgender man and I knew that for him, this bathroom meant the same as it did for me, a safe place to go when you need to go. It broke my heart that he couldn't simply go to the bathroom that matched his gender. I don't know why he made the choice he did, safety probably, but there may have been other reasons as well.

He was explaining that he knew the washroom was primarily for disabled people but that he had chosen to use the washroom because, and here his voice faltered. Just for a moment he couldn't speak. Just for a moment I saw how hard the world he lived in was. Just for a moment I got a glimpse of the weight of prejudice that he carried on his shoulders. Just for a moment.

All I said was, "The best thing about these bathrooms is that the toilet doesn't care who pees in it." He looked at me, and I knew he saw a cisgender man of a seasoned age, disabled or not, he couldn't predict how I would see him or react to him being in 'my' bathroom.

But it's not my bathroom.

Is it?

And I wanted him to know that. I know what it's like to have people deny me the space I need. I know what it's like for people to wish me away from public space at all. Disability reveals people's character almost instantly. It's possible to really learn the depth of people's prejudice and anger at the mere idea of difference. So I don't understand what he experiences on a day to day basis but I know what I do - and that gives hint enough.

He thanked me for understanding. I thanked him for his thanks but turned it down. "The world would be a better place if we all just learned to share space, don't you think? That's all I did, and you don't have to thank me for it."

"The toilet doesn't care, does it?" he said and laughed a bit.

"Well, when I sit on it, it complains a little," I said, "but no, it doesn't care."

"Take care of yourself," he said.

"You too," I said.

My the world, one day, be safe for all of us.

Wednesday, October 18, 2017

The Key Didn't Work: a question

So much of my life as a disabled person revolves around bathroom issues. Is it accessible, can I get into the stall and close the door, how heavy is the door into the bathroom - will it break my footrests, can I use the toilet, where are the bars, and the like. Then there's the need I have to simply not being a jerk and not thinking my disability needs trump anyone else's need. It's a physical and emotional and cognitive challenge just to get around, just to use the toilet, the most basic of needs.

I'm staying in a wonderful hotel, with an amazing room and welcoming staff. The public washrooms though aren't so great. Many I can't get my chair in the stall and none are good for going number 2, for that I need to go to my room. I can make this work.

On our first day here, we checked in early and then used our time differently. Joe went to pick up beer, I went to the gym. The gym has some accessible equipment and I really wanted to get some real exercise in. I'd done about an hour work out and then had to go to the bathroom. The key card did not open the bathroom in the gym and I was afeared that it wouldn't work in the room either. I headed downstairs with a bit of urgency.

There were hundreds of people checking in and the line up were long. I knew from the morning the the concierge was able to check people in so I went to his desk. There were three people in front of me. I had to go to the bathroom, I couldn't use any of the public bathrooms and my key to my room wasn't working. I'm getting increasingly panicked.

The women in front of me all looked very nice. They all looked understanding. But they also looked tired from travel and that they'd been patiently waiting their turn. I had to fight down the urge to ask to just get my key card redone so I could go to my room and thus go to the bathroom which I really needed to do.

I don't like, and I know you won't believe this, talking about my bathroom needs with real, in the flesh, strangers. I don't like the idea of them thinking that I'm thinking that my need is bigger and more important than theirs. I don't like the possibility that they may think I'm using my disability to get to the head of the line. I don't like any of those things, but mostly I don't want to be thought a needy jerk, a man who puts himself before others.

So, I waited my turn. With moist eyes I told the concierge what it was I needed and it was fixed quickly and I was up in my room in moments. Thank heavens.

I've faced the bathroom issue pretty much every day since becoming disabled. It's the balancing act I'm wondering about. Do any of you have issues when needing something disability related, that non disabled people don't worry about - like bathroom access, and worrying about how to deal with the balance between your needs and the needs of others?

Tuesday, October 17, 2017

Conversations With My Penis

Today I realized, with some urgency, that the inside my head talks with my penis have really changed over time. When I was in my teens the conversations went like this:

Hi, I'm here looking up at you, wanna play? Wanna play?

No, bad penis, bad penis, I'm in public.

Come on, come on, it will feel good. You like to play.

No, stop it leave me alone.

Now that I'm nearly 65 the conversations go like this:

Gotta pee, gotta pee, gotta pee.

I'm in the line up for security, wait a minute.

No, no waiting, gotta pee, gotta pee.

Alright I'm through, I'm on my way to the toilet.
/
NOW. How about I go a little now?

NO Wait ... Shit.

This, this, they never taught me in sex education. This, this is why you need to learn about your body across the lifespan, not just when you are young. Excuse me while I go change.

Monday, October 16, 2017

Zipped Lip

Some of the things I haven't said on my travels this year:

To the woman working for housekeeping at a hotel:

Stepping back into the room, to give me space, when I'm pushing by the cart in the hallways isn't helping.

To the guy who looked terrified at the gate when I pulled up:

I don't want to sit by you either buddy.

To the woman working at the doughnut shop in the airport:

Yeah, really, a fat guy just ordered a tea. It's what I want not a miraculous act of restraint.

To the airport wheelchair assistance person:

Really, I know what I can and can't do, if I say I can push myself, I can. I know my body better than you do.

To the hotel valet parking guy:

I don't care that I pissed you off when I asked you to leave while I got out of the car. If you want a show, buy a freaking ticket.

To the woman who asked my about my diagnosis:

It's rude and none of your business. No I don't care if you really want to know.

To the man whose teenager made a pig face at me that you didn't correct:

Great parenting shows itself, you've raised a mean child, you may not get it now, but you will.

To the mom balancing two kids in either arm:

It doesn't lessen you for me to let you go first, I'm in a chair, you could drop precious cargo.

To the clerk who kept trying to get me to wave back as I rolled by:

We don't know each other, okay? You aren't Jerry Lewis and I'm not your kid.

To the people who just walked on and went about their day whilst in the presence of disability:

Bless you. Bless you. Bless you.