Tuesday, March 31, 2015

Disability Diaspora

I only have a few days left. On April 1, this Wednesday, they will come for me. So many of the people I know have already been moved, I am one of the last. I have connections, I fight back, but still, it is inevitable.

It started slowly, with some cuts to funding. With exhortations to “do more with less” and the subsequent efficiencies. But if I think about it more closely, it had started even before then, with the increased professionalization of the attendant care sector, slowly and inexorably shifting control from those of us who receive services, to the people and the organizations who provide them. In much the same way as the story of the frog that won’t jump out of the boiling pot, as long as you increase the temperature very slowly, none of us truly saw where it all was leading.

Until, that is, we were told we would be moved. No longer would we live in our own apartments, in the community, independently. We would now be moved to a facility within a compound. Providing services would be cheaper there, they said. They present it as a boon — we would be among our own, see our friends every day. And aren’t we lucky — we’d have our own rooms and wouldn’t have to share!

I saw those rooms. Half the size of my living room, there was space for a bed and a chair for a visitor. I looked at the door. There was no lock. Then I went outside and saw the three words on the door, each with a space for a check mark. Home. Community. Medical. For our own safety, they said, with a sparkling smile. So our whereabouts were known, should something happen.

One of them just left. I smile at them, act as if nothing is amiss. Pretend I’m getting ready for the move. Inside, my mind is whirling, trying to find a way to escape. I think of saying I’m going to get some groceries and just keep going, with nothing but the clothes on my back. My mother would take me in, she would hide me. It would mean leaving Lucy behind, in effect handing her over to them. The thought sends ripples of despair through me, but I can’t see any way to bring her without alerting them to my plan. Either I leave her behind or I surrender to be moved, to live out my days in a compound of the disabled. I don’t think they would let me have her there, anyway.

The door closes behind them and I am alone in my own apartment, with just four days left of freedom. Supposed freedom, that is, for they watch me, they swoop in to offer help the minute I move outside my door. I am one of the last and they are suspicious of my acquiescence.

My neighbours — all able-bodied now — look at me askance, some with pity, some with growing impatience. My apartment will be empty soon, available to someone who needs it. Because I don’t need it anymore. I will have a safe home. Among my friends. At the compound. They talk about me, no longer to me. The other day, someone screamed at me that I was a freak, that I should be ashamed of being out in the world.

It happened so fast, this last step from efficiencies to exodus. And no one is fighting it, no one is disagreeing. They have handled it so well, tapped into that underlying fear of the different, the conviction that people like me should be elsewhere, out of sight. In care. And now we will be behind a wall, apart, out of sight at last.

I know how this goes. Never again, they said. And yet, here we are again.

This was a dream I had this weekend. 

Friday, March 27, 2015

Longing for Out: The Itch to Travel

I caught the travel bug early. One of my first memories is of a trip to a rented cottage near the sea that happened when I was four years old. Another favourite was my first experience with flying when my dad and I went to Rhodes just after my sister Janne was born. I was ten and loved every minute of the trip.

Being surrounded by landscape, food, architecture, and people who were completely different from my normal life opened me up in a new and exciting way and I’ve been addicted to that feeling since. I’ve been lucky to be able to feed that through many wonderful trips. We were very fortunate that my father travelled a lot for business and we benefited from the spoils of this, following him on some of these trips that added family vacation to the business part. Whether it was the UK with a road trip through the Scottish Highlands, visiting my uncle and aunt in the Eifel Mountains in Germany, trying a Romanian spa by the Black Sea, or roaming the streets of Paris, these trips were filled with adventures, with learning and seeing new things. Another addiction.


Other trips were just for fun without the business part, and many were in North America. The surroundings were a bit more familiar, yet still new and wonderful. We loved the West Coast, especially, and a visit to Expo 86 was followed by another road trip through mountains, this time the Rockies, which are very mountainous indeed.

  Lake Louise
And then my sister and I started travelling together, first visiting a friend of mine in Long Beach and in subsequent years discovering the grown up playground that is Las Vegas. Which is where this ocean-addicted blogger discovered the desert and described it as “like mountains, only more so.” This was a feeble attempt at communicating the feeling of insignificance these magnificent landscapes caused in us tiny humans. The way you know that you don’t matter to these environments, that they have been there long before you and will continue to be there long after you’re gone. It is humbling and focusing, all at once.

The Valley of Fire, Nevada

But this post is not about travelling. Rather, it is about not travelling.

I lost a great many things in the big flare 10 years ago and one of them was the ability to travel. Not just in a plane and out of the country, but in a car or train and out of the downtown Toronto area. My body is too wrecked and my pain levels too high. I can no longer use a manual wheelchair, which makes travel infinitely easier. My body is now so persnickety that sitting in something other than my power wheelchair is impossible and that precludes flying. The pain that I keep tamped down with medication and mandatory rest periods comes roaring back when I travel in an accessible vehicle, my power wheelchair tied down for safety. Which prevents a trip to Ontario cottage country, Niagara Falls, or my sister’s new house.


It comes roaring back when I present my body with anything new. Whether it is 30 minutes of testing a new wheelchair (paid for it for two days) or accompanying my sister on her gift of driving a race car just north of the city (paid for it for two weeks and worth every minute), my damn body will not give me leave to do anything but sit in my power chair, sleep in my own bed, and stay close to home.

Niagara Falls

And I miss it. Inside of me there is a longing to go elsewhere, to seek out the new. I yearn for Out. For flying, for landing, for new vistas, new food, to visit new friends. More than anything, I wanted to be at that wedding in Arizona, that conference in Wisconsin, and all the other moments, personal and professional, I’ve missed and will continue to miss because I cannot leave home.

  Las Vegas
And then there are all the places I have dreamt of going. All the places I thought I would get to. Ireland, Monument Valley, Alaska, New York City, South Carolina, New Orleans, Australia, Africa, back to San Francisco and Vegas, Paris and Scotland. And Denmark. To see the people and places I love. 

Alcatraz, San Francisco

 In this new life of mine, I work hard to focus on what I have and what I can do, not at what I don’t have and can’t do. I am grateful every day that I have this miraculous life, that I am allowed the privilege of the work I do, and the joy of being with the people I love. I find adventures not too far from home and imbue them with the same sense of wonder and discovery that lies in foreign travel. And when I think of the things I have lost, I remember how much I have regained in the last ten years and try to believe that the door is not closed permanently. That it might open yet again.

Some day.

Monday, March 16, 2015

A Trip to Allan Gardens Conservatory

Toronto has just come out of the worst February on record. As we entered into March, we reached 43 days in a row with sub-zero (Celsius) weather. The ice in the harbour is over 18 inches (almost half a meter!), so thick that the ferry service to the Toronto Islands has been suspended. Still is. A thick layer of snow covered everything and it had been so cold that there was a crust of ice on the snow, creating a glistening shall. All these months of dark and the monochrome palette of white, grey, brown, and black has made us hunger for colour and warmth. (as always, click on photos to embiggen)

Luckily, there is a place where you can find this, even at the beginning of March in Toronto. Last weekend, The Boy and I went to the Allan Gardens Conservatory. It was our first visit there, which is sort of strange. The Boy is a Toronto native and I’ve lived here for over 30 years, yet never made it inside these lovely greenhouses. I’ve driven by it multiple times, each time thinking I should go there someday, but somehow never quite getting there. It turns out I was waiting for the perfect time and last weekend was it.

As we entered the park I looked up and saw something flying far ahead. It very much did not look like the standard urban birds and in fact, watching a flock of pigeons frantically milling around, I knew something was up. And then I saw it. It was the red-tailed hawk! Well, I’m not 100% sure, but the silhouette was very definitely not a Peregrine falcon — it was bigger, thicker. The branches of the trees in the park got in my way for a solid shot, but that didn’t matter. It was a real privilege to see it again. I’m pretty sure the pigeons didn't share my feelings, though.

The Allan Gardens Conservatory has been around for a while. In fact, the central Palm House was built in 1910 and modelled after similar structures in the UK. It’s one of the things that attracted me to it — it looks like something out of an old sepia postcard. The Conservatory is comprised of six greenhouses, each focusing on a particular theme.

We opened the door and walked inside. And I stopped, not dumbstruck, but colour struck. After The Boy gently suggested I move forward so other people could enter the greenhouse, I got moving again, going into the Palm House.

Green was all around us. The Palm House is filled with plants, low, medium and high (as is the rest of the greenhouses). No matter where you look, there was something interesting to see. True to its name, this first greenhouse was filled with different palms, including banana palms! But what I mostly focused on was the green, the flowers, absorbing the colour, drinking it in through my skin.

It’s not until you see living plants that you know how sparse the winter diet is.

My camera was a tad overwhelmed, too. Coming in from the cold to the humidity of Palm House had my lens fogging up. Which made for an inadvertent, but very interesting filter.

I developed a few favourites among the greenhouses, one of which was the Arid House, displaying cacti and succulents. I don’t know what it is about cacti that I find so fascinating — it might be the thorns, the interesting shapes, the variety of ways nature has found to create life in a forbidding landscape. Whatever the reason, I was enthralled.

My other favourite was on the other end of the spectrum, housing a lush, tropical landscape with several water features. How can you not love a place where this is one of the first things you see?

As we moved through this greenhouse, we heard the sound of trickling water and at the end of one path, we found a water nymph surrounded by flowers and aquatic plants.

Over the past month, I had heard much about Spring flowers from friends in Denmark and  Vancouver. They have even been nice enough to share photos of these flowers with me, which has been much appreciated (and only occasionally cause for whimpering). But it’s okay, because I’ve had just had a massive dose of Spring. It counts, even though it was indoors.

Turning away from the water nymph, we wandered up and other path and found the second water feature, complete with wildlife. At first, I thought they were little statues, but no. Real, live and somewhat snooty looking. Turtle? Tortoise? I can never remember the difference.

It took us almost 2 hours, but we eventually were full enough of green that we could wander into the cold and monochrome landscape outside. Spring will come here, too, in a month or maybe two.

Until then, we can always go back to Allan Gardens.