the pinko julie show

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Seems Toronto the Good could be better for the “intricate, sincere and sexy.”

That’s how filmmaker Loree Erickson describes people with disabilities in the Big Smoke. She’s about to, shall we say, flesh out that picture at a happening tomorrow evening.

“Reclaiming the Gaze,” featuring performances by Julie Devaney (My Leaky Body) and Peggy Munson (Origami Striptease), is also billed as a fundraiser for Acsexxable, Erickson’s plan for Toronto’s first accessible sex party.

It’s her way of countering the “desexualization and devaluation of people with disabilities and bodily-based oppression in general.”

Is T.O. ready for the message? Ready? “People are excited,” says Erickson.

Catch the action at 7:30 p.m. at Tallulah’s Cabaret, Buddies in Bad Times Theatre. Tickets are $10 or pay what you can. More info: femmegimp@hotmail.com.

meggie as george bush and me as tony blair!

There’s a better quality version on the actual site — I just couldn’t make it work here:
Click here for UpStage

I’m performing in a cyber-piece at a New Zealand Festival this weekend. It’s very cool, we’ve been rehearsing online with avatars between Toronto and Manchester, I have to get up at 3 am to perform, and it’s projected onto a screen at a festival in New Zealand, 7 pm Saturday night. Here’s the description:

This performance plays with MI5 instructions to ‘stay alert at all times’ and report ‘suspicious behaviour’. Contributors to the performance will include found members of the public who will have engaged in ‘activations’ in London during the 7 days leading to 07/07/07. Creator/devisor Meg Fenwick (London), visual designer Marischka Klinkhamer (Amsterdam) and performer Julie Devaney (Toronto).

julie is sleeping. it’s hot. window is open. window opens to major street. it’s 4:15 am.

Loud talker 1: He gave you his MySpace URL??!? That’s harsh, man! Harsh!

Loud talker 2: laughing, embarressed. I know!!

That’s it. That’s all you get readers. Loud talkers outside my window. Things are great. Busy, great, good. Driving five hours to an exquisite piece of land to camp and swim for four days. Poor me.

See Part I & Part II

Two hospitals in two days. This used to be a regular enough occurence. Not so much for being admitted, but because I always had specialists in different places.

This time as I walk into my surgeon’s office, her admin person looks surprised.

“What are you doing here??”

She smiles.

“I brought you something.”

I reach into my bag and pull out a postcard ad for my show. Me, on a stretcher, in a hospital gown with the words “my leaky body, a story of healing… and making trouble”.

She laughs,

“This is great! We have a clinic day on Tuesday, I’m going to put this up right here, I’m going to try and come, too.”

I look at where she’s placed the postcards, on the counter, propped up facing out, and I grin,

“I’m not sure that’s such a great idea… I mean, certain people…”

“Yes, you’re right, it might not be for certain people, I know what you mean… I have a few patients who are having a lot of trouble right now, I’ll give them cards.”

I’m picturing certain other specialists who I still have to see (not my fantastic and progressive surgeon), and I think she is too.

I leave to go back upstairs to work (yes, to work, upstairs!). I’ve got a part-time job coordinating a research project about the barriers women with disabilities are facing cancer screening. On my way to the water cooler I pass a line of women sitting in hospital gowns, uncomfortably waiting for their mammograms. I start having a debate with myself, do I look, do I look away, is eye-contact invasive or is averting my eyes offensive? What would I have wanted? I decide a brief glance and a nod is most appropriate, afterall, this isn’t really about me.

The next day I’m going for blood tests at my local hospital. I visit with my favourite techs and nurses, passing out cards. They all giggle with glee. My specialist says,

“We’re so proud of you!”

The iron thing is still an issue, though much less so than in the past. And I’m pretty happy with the plan. Later on I cross the street to my family doctor, who’s on her first week back after mat leave. I visit with her and the nurse that assists her. My favourite reaction to handing people the postcards is the completely unsurprised non-plussed,

“Oh, your show! Thanks, congratulations.”

And then an immediate switch to logistics; time, place, babysitting, etc. She wants to try and come. I leave a bunch of postcards in the cafe across the street where staff and patients often hang out.
Walking home, I’m thinking again about what the really funny thing about chemo clinics is. Chronic illness is wretched. Everyone deals differently, but on the whole, irrespective of whether or not you have more ebbs than flows it really sucks. My observation as a patient with an autoimmune illness that is not cancer, is that as patients, we really seem to be coping better than almost any of the loving people who are supporting us. I qualify my observations with the fact that I never had cancer because of course, my diagnosis shaped my experiences. But as my sister pointed out, lots of people who do have cancer have much shorter and less difficult illness trajectories than I had. Less surgery, less drugs, often less pain. Cancer is just the word with the power to evoke social imaginings of pain, torment and death. So no one actually waits to see how the patient is actually doing (or, more aptly, “being”) outside of medical tests and recountings of symptoms.

The assumption is made,
“Okay, you have cancer, this is obviously tragic, I know exactly how you must be feeling because this is my worst fear.”

And because I’ve been in the clinic so much over the last two years, getting blood and iron, waiting for appointments, the looks of the “healthy” visitors get more panicked, because I’m not their stereotype of “how a cancer patient should look”.

“OMG, if she looks so young and healthy and normal, what’s protecting any of us from being sick.”

And the true answer which immediately collides back with them is “Nothing. Nothing is stopping your physical body in this physical world from aging, breaking down, changing.”

Because we are all vulnerable to change. Including me, right now. I am grateful for that because illness has taught me that this vulnerability to change is also the potential to heal. But healing doesn’t mean papering over the cracks to be “normal” and “perfect” again. It means learning that change is constant, and that’s okay. It’s about being willing to move with the leaks, the flows, the constant cracking and repairing that is life and not committing to the illusion that if we just follow some invisible set of rules we’ll be immune.

I’m glad that my presence in that clinic has shattered that myth for some people. The power in my story is not just that I didn’t die, and presently have physical health. It’s that I got to participate collectively with other patients (some of whom did die) in a healing process that spilled out into our families and friends and the world beyond the mythical barriers of physical bodies. So the funny thing about chemo clinics, is that often as patients we are the strong ones, the collective healers. And all the caring, loving people who come to save us are having all their concepts of us as tragic victims and their illusions about their own bodies shattered and re-formed. Cracked and repaired. Changed. We’re all moving through this together.

It’s Sunday, it’s raining, we’ve gone out for brunch. Somehow we start talking about Genies. I think something to do with the X-files and musing about the anti-ableist implications of the man in the trailer park wishing for a gold wheelchair instead of what everyone else thinks he should wish, which is to be able to walk. I’m insisting that nothing good could really come from a wish. It would always have some kind of backlash. So B. says,

“What if I wished that you were really healthy and that you never got sick again.”

And I say,

“I would hate that. For one thing, I am really healthy. And I actually appreciate my body’s reactions to things, it’s always excellent information.”
Now I need to qualify that statement. The idea that every dark cloud has a silver lining annoys me. Sometimes black clouds just have violent spiralling tornados that kill you. Unless of couse, you get out the paintbrush and slap that silver paint on. At least that’s my theory (something about labour, agency, self-emancipation, you know). There’s also that maxim that whatever doesn’t kill you makes you stronger, which also irritates me, because I’m pretty sure sometimes it just makes you almost-dead.

So that’s totally not what I’m saying. But here’s a good example. I used to have chronic migraines. That was my diagnosis: chronic head pain, migraines. So if you met me between the ages of 13 and 23, chances are I had a headache. What happened at 23? I ended up in hospital with colitis. The next few years I spent in bed in pain more than out. And suddenly, the migraines were gone. No head pain, none. Whenever I would get back out in the world, and “function”, the headaches would come back. But now I can read them. I see them coming, I take some time out… they never arrive. A few months ago I wrote this:

>I’m sitting next to jj before the talk begins and I’m suddenly aware that the ceiling is sinking. The flourescent lights are penetrating my skull, stoking the remnants of last week’s migraine. I look around, the room is getting more and more full. The air gradually stops circulating, my tummy is churning, I’m nauseated.
I turn to jj,

“I have to leave or my head’s going to explode.”

She looks sympathetic. They’ve started now so I wait until there’s a pause between introductions and make a really poor attempt at sneaking out subtly. But I have no choice.
I get out onto the street and the thick and grey air suddenly feels like the most light and beautiful elixir. The cloudy sky looks like freedom. I call my friends who work and live the area, no one’s around. So I get on a streetcar, not really sure where I’m going, just wanting the air.

I end up at myrn’s and we go out for noodles. I tell her what happened,

“You know that’s probably the most literal manifestation of an exploding head I could have come up with… a migraine accompanied by violent vomiting.”

“That is pretty literal.”
“And if I hadn’t left it really would have happened. But now it’s completely gone.”

Now that I’m busy with performances and a new research job I have to be extra careful about taking time out and setting boundaries. My body actually doesn’t allow me to do things that are not appropriate for me, like checking work emails on weekends, or being constantly available for any other person or cause, or sitting in a poorly-ventilated room where people talk endlessly about nothing.

I need at least one full day a week of complete silence with ringers off to just write or read or paint or vegitate. Sometimes I end up doing a lot of work on those days, but it’s always exactly what I feel like, with no one else around. And sometimes I take book out for a long lunch. I call them my Moon-days. It’s nice when they actually fall on a Mo(o)nday, like today, but they could be any day.

When I first got sick, my life was so overloaded with endless activity that I couldn’t see straight (interestingly photophobia was a feature of my migraines). So my body just stopped digesting food. It wasn’t exactly a lifestyle choice, I needed to work a lot to have enough money to exist, I wanted to stay in school, and activism fed my soul. But I couldn’t do it. Without my body setting me straight, I can’t picture having changed my life to suit me this well.

In the past, if I tried to meditate I wouldn’t last more than 5 minutes without starting to have a panic attack. Last fall I went to a four-day silent retreat. It was fantastic, it was such a relief. I had no idea how much I speak to placate other people. It was so nice not to even have to look at anyone else. (Of all the things I learned, the main thing is that I’m definitely not a buddhist, tho’ I like that other people are. And also that there’s some people who I can only be friends with while they’re completely silent because at the end of the retreat they turn out to be snotty stuck-up middle class kids with a penchant for working class chic, but that’s another entry for another time).

I also can’t ignore emotions anymore. If I try to take something on that I don’t actually want to do, or go somewhere out of obligation my body revolts. If I eat things that my body doesn’t like, I know right away. When I’m angry, if I don’t clearly make a change or set a boundary, I’m back in bed with something.

So what would B.’s wish really do for me? Allow me to function “normally”? Building up years of seething resentments that I never did what I wanted to do, and toxins in my body from all the convenient foods I would otherwise be eating, saving it all up until I develop some other disease of toxic resentment when I’m 50?

Nah, I’d rather take art and moon-days and trusting my body and my feelings. I’m doing another public show in two weeks. I’m re-editing and re-writing bits of the second half right now, which always gets me thinking. It also gets me talking to the bands of fairies floating about in my head, and all the other funny creatures I would never meet without the silence of a Moon-day.

It’s mah birthday!! Woohoo! Yay me! Got an excellent run-up-and-down-the-apartment-like-a-mad-cat greeting from Willow. Even a bit of a kung-fu show.

Was totally against internet-networking tools for years, mostly stemming from an unfortunate IM incident about 8 years ago when I said something I thought was funny and someone didn’t speak to me for a couple of years. Then I decided I was cursed. Or maybe just Morrisey (big mouth…).

But facebook rocks. I organized a disability politics course at a conference a few weeks ago and some people came out just because I created an “event” on facebook. I was formerly one of those “Anyone I like already speak to” people, but it’s blatently untrue. So many people I like who I just lost touch with are my friends now. And they’re all sending me birthday messages, yay!

The other objection I had to facebook was when I saw people on other people’s profiles that I know they don’t like, under the category “friends”. I’d like an “enemy” category. I have a friend request that I could happily put in there. So if you’re reading this, and wondering why I haven’t confirmed our “friendship”, it’s because you were *totally* mean to me. Oh, from about the ages of 10 to 15. You never quite figured out the golden rule of highschool: “when you say nasty things about someone, make sure the person you’re telling isn’t better friends with them than you are.” Cruel, nasty, evil things. And it’s my birthday. So you need to go away.

That’s kind of the other thing I hate about these things, is that there’s too many 15-year-old moments. And I was a really bad teenager, as in, really bad at being a teenager. I love aging. Today is my celebration of aging day! Yay getting older.

(On the highschool-flashback note: I also just started a MySpace page a couple of days ago but I don’t know many people on MySpace. So if you have one please add me.)
B.’s still asleep. I woke up at 6 like a kid on Christmas, all bouncy bouncy. So I’m talking to the cats. Then I’m going outside to water the beautiful garden I planted.
S. & B. and I are going to a workshop today. Yes we’re geeks, but it’s *my* birthday and this is what I want to do.

In other news, I’M 28 TODAY! WOO HOO! HAPPY JULIE’S BIRTHDAY EVERYONE!!

So I stare back. Then I start wondering why it is that her giant gold crucifix is at my eye level. Huh, it’s the chairs. Hers is like six inches taller than mine and the desk is higher than my chest level. Which is really bad (not just because of the obvious power imbalance) but because this whole process is very slow and tedious and I have a very inappropriate habit of putting my head into my arms when I’m bored.
At least she’s smiling this time as she chomps her gum at me. Yesterday it was all like,

“But why do you want your business account here? You don’t have any other account here.”

And, “So you have a business? Is it registered?”

No. I don’t have a business, I don’t really even want a bank account and no I didn’t register it with the government. Clearly that’s what I meant when I said “I’d like to open account for my business.”

I was even dressed nicely yesterday. But instead of launching the sarcastic tirade I just smiled and handed her my license.

“Performance-based workshops and publishing? Huh. Well we have to check your credit. It could take a couple of days.”

“Okay, that’s fine.”

So today she calls me back all chipper, because despite my spotty work history I’ve managed to accrue and pay back large amounts of credit card debt. They like that.

Now I’m someone who might even want a mortgage with them. When she calls back today I’m working at home and I’m in full-on hippie sundress legging attire but I don’t change, because clearly I’m finished being judged. I walk over to meet with her, looking very un-bank-like, but this time it doesn’t matter, because she doesn’t need to look at me to try and determine my economic status, she has the equifax report right in front of her.

She’s still incredibly annoying. A couple of times I realize that I have my chin on the desk and snap it up again, but she doesn’t seem to notice. This time she’s offering me credit and asking when I might buy a house.

This story doesn’t really have a point. I just realized while Jesus was staring at me as I sat in banker judgement that there was no other way to satisfactorily get it out of my system than to blog it. I guess the other point is that I’m going to be able to sell tickets with paypal now. Which is cool. Well worth the two hours of my life I spent in icky bankness.