How I found my voice … and why I’m still trying to find it

I’ve been thinking a lot about voice lately: who has it, who doesn’t, and why it’s worth having in the first place.

I think it’s safe to say that for much of my life I’ve been searching for this voice – the one I can proudly proclaim to the world and say, yes, this is mine, this is me. I’ve already mentioned a few struggles as to why this voice has been harder for me to find and cultivate than it may have been for others. I think I’ve been scared, quite frankly, to put my voice out there because I’m afraid it will be shot down, or, worse, will be drowned out by other, louder voices.

This past year I’ve read a lot of marginalized voices. This was both for my Masters studies and for I course I T.A.’ed at the University of Winnipeg called Representations of Disability in Literary and Cultural Texts. It was the first time the course – or anything remotely like it – was offered, and it was such a thrill to see undergraduate students engaging with characters and narrators that they wouldn’t normally have interacted with in your typical English course. Discussions of such characters opened up lively conversations about different body forms, expression, notions of compensation of what a body can do and what it can’t, and various other topics. I’m not saying that these topics might be ignored in other classes, but it did make me think a lot about why topics like the ones mentioned aren’t talked about on a regular basis.

And what I’ve come up with is that it depends on what kind of character brings them up, or evokes such conversation. Usually it’s a character that might have been ignored or deemed abnormal (for whatever reason), and so those characters are the ones less likely to appear in literature and other cultural texts (media, film, etc.).

Ok, so I’ve gone off on a tangent. What does this have to do with voice, you might ask?

Well, if that character (appearing in either fiction or non-fiction) has been relatively ignored in literature, then their voice has also been ignored. And because of that unfortunate circumstance, whenever that voice happens to appear, it’s still treated as an anomaly.

And so the merry-go-round takes a spin once again.

I’ve been trying to figure out a way for years to make a voice like mine be able to stand up on its own. And it’s been hard, I’ll admit. There’s a lot of diversity in this world, and rather than competing with those rich and diverse voices that tend to talk over one another at times, we should be able to work together to make our voices stronger.

I say should, because I don’t think that’s happened yet – there have been attempts, yes, but not to the extent that I think it could potentially happen. And I think this is possible, it just might be down the road a bit.

So, in the meantime, I’m going to put my voice out there and just let it go. I hope that not only disabled people can see truth in it, but anyone who has run up against this somewhat impenetrable mentality of “oh, sorry, you have to act/look like/embody such-and-such in order for us to listen to you, so go back and try again.”

And all I can do is hope for the best.

And for all those people out there trying to find their voice, whether in print or just in life, here’s my advice: don’t stop trying till you find it. Because when you do, and when you know how to use it, it’s pretty dang special.

“You have a freak flag. You’re just not flying it.” – The Family Stone

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Why inaccessible buildings are a form of discrimination

As I live in a relatively “old” city with relatively “old” neighbourhoods that come with old architecture (although, to be sure, I have it better than other North American cities, let alone European history-at-my-doorstep cities), I’ve come up against places I’ve wanted to go that, for all intents and purposes, I just can’t get into.

That’s always left me frustrated, I have to admit. And I’ve had to learn to live with that frustration, unfortunately.

Don’t get me wrong: I know there are many, many reasons a building remains inaccessible. I know the costs to make a building – especially an old building – accessible are astronomical, which doesn’t encourage proprietors to take the steps needed to make their building accessible by any means, also unfortunately.

But, let me just put this out there, as derisive an issue as it might be: how is saying I can’t enter a building (or have to enter through a different, “accessible” entrance separate from the “main” entrance) any different than saying that women, people who are gay, or people of different racial or ethnic minorities (or majorities, as the case may be) cannot enter a building?

Because, when I can’t enter a building, oftentimes it feels like that is somehow my fault – that I’ve done something wrong, that my kind aren’t the reason or the audience the building/establishment was made for or meant to provide services to.

And that’s, frankly, upsetting on a number of different levels.

*

I do have more “choices” of mobility than other people might. I can transfer into a manual chair, which can literally open up doors to places I can get into. And people reading this (and people I’ve come across) have said things, when finding out some places aren’t accessible, like, “Well why don’t you just use your manual chair to make sure you can get in?”

This has been a go-to option that I’m fortunate I can exercise when the time arises. But, unfortunately, it doesn’t really solve the problem. Being so used to being in an electric chair, I totally take my mobility for granted (but, then again, who doesn’t take their mobility for granted), but the times I really notice not having my electric wheelchair is when, lo and behold, I’m not using it. And although the portability of a manual chair is great, I literally feel like another person in my manual chair – a person who can’t push themselves around, so one who is literally “stuck” when no one is around to push them. (Also, interestingly but not surprisingly, my confidence level differs from chair to chair, too.)

So, getting “into” somewhere in my manual chair doesn’t actually dictate a “successful” excursion to that establishment – certainly not when I have less confidence in myself as a person and when I am literally dependent on someone else taking me from point A to point B (even when those points are just across a room).

Also, there seems to be this myth that paying to make a place accessible won’t actually make a difference to who will/will not use said establishment. Not only do I find this myth frustrating, but I also sense an untruth lies at the centre of it. For, if an establishment opens up their space to a growing portion of the population who uses non-portable wheelchairs, walkers, and other mobility devices, of course their clientele will change. And all disabled people, despite what the media say, are not below the poverty line. Many of them are, to be sure, but not everyone. A great number of the disabled people I know, in fact, are middle-class persons like me who are just as susceptible to going out and blowing our money on the next must-have item.

Case in point: there’s an indie used movie/music store in my neighbourhood that used to be perfectly accessible until about a year ago when they changed locations just a block away. I used to go there almost every day in the summer (even when I didn’t live in the neighbourhood) to rent DVDs (this was pre-Netflix, but even still they have an amazing selection of independent/lesser known movies) and browse their blow-out DVD selection. I most likely spent a couple hundred dollars there every year, easily, until they moved locations. Now, they have a ramp up to their store but it isn’t out every day.

I’ve only gone in there once since they moved, and that one time was with a friend, and I didn’t purchase anything.

So, please do me a favour and erase that myth that disabled people will not bring business in to an establishment or service provider, because I can guarantee you that if that establishment is popular enough to attract the majority of mainstream society, that will include disabled persons – it shouldn’t exclude us.

“Prejudice is a burden that confuses the past, threatens the future and renders the present inaccessible.”- Maya Angelou

What my twenty-eighth year taught me

Exactly a year ago tomorrow, on my twenty-eighth birthday, I was on my bus to work when big, fat, hot tears started rolling down my cheeks for no apparent reason.

Well, yes, there was a reason: I had never been so depressed in my life, but I hadn’t yet admitted that to myself. But that day, as I was on the bus, was the first time I knew that something was essentially, totally, horribly wrong. It was as if a neon marque board had gone on in my head and all it read was, simply, “I can’t go to work. I can’t. I just can’t do it.”

So I got off the bus.

Thankfully, there was a community garden on the bus route and I just sat in the garden and cried – hard – for a good twenty minutes. What made it even harder was that I was feeling this way on my birthday – a day you are supposed to be ridiculously happy – and I was not, suffice it to say, ridiculously happy. I was, in fact, not happy at all.

I hadn’t had a good night’s rest in a couple of months. I’m a person who needs at least a good eight hours’ sleep in order to function at a satisfactory level, and I wasn’t functioning near that at all. My brain felt like it was constantly filled with cotton balls; I had to remember simple steps to accomplish tasks I had been doing for the past two years at work. It felt like I was a shell of a person. When someone would come into my office to talk, even if it was to say a friendly hello, I’d physically flinch, scared at what they might want from me – even if it was just small chitchat.

I could not deal with being around people, and knowing this about myself made me feel even worse. (I’m not a social butterfly at the best of times, but there are only so many times you can hide in your office at lunch to avoid entering the lunchroom.)

I got on another bus to my parents’ house, trying to calm myself down enough so people wouldn’t feel the need to ask me what was wrong.

The day started out questionable, to say the least, but ended rather lovely. During the day I slept (or tried to) on my parents’ couch, sun streaming in through the bay windows, while my mom went out to get me a new pair of shoes because my old pair kept falling off my feet, causing me inordinate amounts of stress at a time when the smallest circumstance could send my self-esteem through the floor. We went out for my birthday supper to a patio, and then came home to eat ice cream Drumsticks and drink red wine in the gazebo.

It turned out being a lovely day, really, but I wasn’t feeling it. I knew I was supposed to feel happy, but it was as if I couldn’t even muster up enough energy to make myself feel anything even remotely resembling joy.

And that made me sadder than anything else has since.

*

I told the wonderful HR person at my work that I needed a break. I was officially leaving the position at the end of August, but she told me to take as much time as I needed and they would pick up the slack until my replacement started. I went in once to tie up a few loose ends, and then for about six hours spread over two days to train my replacement.

I was eternally grateful that I was so supported in that decision, by both my employer and my parents. I still am.

But the hardest part wasn’t over yet. My doctor doubled my anti-anxiety medication (which I had been on for a couple of years already), but that backfired and I still wasn’t sleeping. The dosage was lowered again – but still higher than what it had been originally – and, with the help of a sizable amount of sleeping aids, I was beginning to get some much-needed rest. I read a lot. Which was wonderful.

I also went to Folk Fest for all five days in mid-July, taking a bus to and from Birds Hill Park (about an hour ride each way) every day of the festival. I soaked up the sun, listened to amazing music, bought way too many overpriced iced chais, and slowly began to feel like myself again amidst a crowd of people who effused love and joy in their unabashed hippiedom. I was emotionally and physically exhausted by the end of those five days, but I was happier than I had been in the past four months.

And I hung out with my mom at the cabin. We read a lot. We drank wine. We laughed. We ate good food.

And then my niece was born. My younger brother’s wife – a couple I admire to no end and who I look up to in many ways even though I’m older and “wiser” (apparently) – gave birth to their first baby, a six-pound long-legged bundle that kicked her mother’s womb virtually non-stop in my sister-in-law’s third trimester. I visited her in the hospital when she was barely eight hours old, and I was the first family member to hold her other than her parents. I could barely contain myself; I couldn’t take my eyes off her.

I was and would forever remain Auntie Kate, and no one could take that away from me.

I was alive again.

*

And now, a year later,  life is still hard – it will always be hard – but within the past year I have tried my best to trust people with my vulnerability, and also to trust that the people I know best and who know me the best will not let me down.

I have tried to increase my faith in others.

And that also extends to you, dear readers. You are my birthday gift.

So thank you.

Though chocolate will not be turned away.

 

Why disabled beauty is not an oxymoron

There was a summer afternoon a few years ago that I’ll never forget. My best friend  – who also uses a wheelchair – and I were in a coffee shop when a woman came up to us and nonchalantly gave us what she most likely thought was the compliment of our lives (it wasn’t). What she said was this: “You girls are so pretty. It’s a shame you’re disabled.”

Even as I write those words, something deep in my gut clenches. It’s not just that I know she was trying to be nice, but ended up unwittingly insulting both my friend and I despite her good intentions. It’s not even that she said what she did, and then went on her merry way, not even engaging either of us in conversation – she just said what she said, and that was it.

It’s that she had an image of a disabled person in her mind, and neither my friend nor I happened to fit that image. So instead of challenging that image, she commented on how she “thought we should look” as disabled persons instead.

And, apparently, disabled people aren’t supposed to look pretty.

*

I’ve struggled to feel beautiful all my life. Intrinsically, I know I am a beautiful person – it’s taken me a long time to realize this, but I know I am, even though it’s still hard for me to come out and say it often. However, it’s still hard for me to appreciate – and trust – when others think I’m beautiful.

Society says that beautiful women are, essentially, whole people. It’s hard to be looked at as whole when you’re sitting down all the time. It’s hard to be graceful when you rely on a motor to get you from one place to the other.

And then there’s the attractiveness factor, which, believes me, complicates things to no end. Not to paint a bad brush over the guys out there, but when they’re intrinsically “taught” from a young age what’s beautiful and what’s not, a woman in a wheelchair who doesn’t hit all those factors has a hard time living up to our peers.

After all, we’re not supposed to be pretty. So it’s little wonder that we’re not at the top of the list for men to call us out as being attractive when we’re not supposed to be.

And maybe it wouldn’t matter if there wasn’t such an emphasis on coupling in society, but unfortunately there is. And all that pressure to be in a couple? Disabled people aren’t immune to that. But it’s hard when the onus lands on us to “make our case” for why we should be considered attractive.

I haven’t done a very good job of that, I have to admit. Inevitably, I’ve felt like that’s been my fault at times. I’m slowly beginning to realize it’s not, and I’m also just beginning to realize it’s ok to talk about this kind of stuff. It’s not my fault that this stuff is uncomfortable to bring up. And I shouldn’t feel like I have to apologize for it, even though I still sometimes feel like I have to.

I know that it’s people like that stranger in the coffee shop who are to blame for my insecurity, not myself.

And part of that’s a victory. The other part of that victory is when I finally do find that guy – and I know he and his friends are out there – that isn’t afraid to stand up and say that my disabled peers and I are attractive, and he isn’t afraid to admit it.

Not because I need to hear it, but just because it’d be nice to hear it.

“She wins who calls herself beautiful and challenges the world to change to truly see her.” ― Naomi Wolf

Why I’m still waiting for patience … and it’s still hard

I’ve never been a very patient person. I deplore waiting for things I really, really want. I catch myself thinking things like, But why can’t I just have what I want now? Like, now, now? As in this minute now?

This has got me into some trouble sometimes. I go after what I want, right away, and of course it never turns out the way I originally planned. And I’m always left thinking, But it’s what I want. Why can’t it just happen my way?

At this point I always have a little grasshopper moment (I swear this is from a movie, I just can’t remember which one it is for the life of me). As in an omnipotent voice speaking to me out of the sky, reigning down on me from a cloud, saying, Little grasshopper, you do not know what you need. You do not know the forces working around you that are preventing you from getting what you want. But I see you, and you will get what you want, eventually. Just be patient.

Whereupon I usually have a little hissy fit.

As I get older, though, I’m beginning to see the true wisdom behind patience (I still have hissy fits sometimes – believe me). The ultimate “lessons” that patience is often meant to teach still infuriate me, but I have become able to look back at periods in my life where I can truly say I was not ready for what I really wanted. Not even close.

Like now, for example. I’m essentially getting paid to write, and am meeting some pretty cool people in the process – some I’m reconnecting with, and some I’m meeting for the first time. This is the kind of job I’ve been looking for for the last ten years.

I couldn’t have done it ten years ago, though. I doubt I could’ve even done it five years ago. Well, maybe I could’ve – but I wouldn’t have been very good at it.

Coincidence? I think not.

*

So, I’m trying my best to be patient. I couldn’t have imagined the stars aligning any better for me to be in the place I am right now, at my little desk at MWG, writing my little crippled heart out for all those people out there (that means you). I have three months left at the Guild, and I’m not planning on leaving without laying out everything I have.

And all the stuff I want now, like right now? (Like, can’t I write the best thing I’ve ever written now? Why not?)

I know it’ll be there for me, at the exact moment I really need it. I can learn to wait for that.

Maybe. I might need a little help.

But I will, and I’ll survive. After all, I’ve made it this far. And it’ll be awesome, when I’m ready – but not a millisecond before.

“All great achievements require time.” -Maya Angelou

How doing the thing that scares you to death can pay off

I’m a rather timid person. I’ve been this way for a long, long time; apparently I was a rather gregarious child, but that seemed to change – and change quickly – once I emerged from the Children’s Hospital when I was five years old after a two month stay. I literally couldn’t talk at the time, but even when my voice returned I was no longer the same person I had been before I became disabled. My body was different, that was for sure, but – as in daughter, sister, niece, cousin, granddaughter, friend – was also different.

I struggled with this new me for a long time; in some ways, in fact, I’m still struggling. I wonder about this new person that emerged – this new disabled person – and whether/how much she differs from the person I was until I was five years old.

I think I know the difference – I’m pretty sure that’s when the timidness crept in – but then, you never know. In some ways, it seems inevitable that my personality would change once I was no longer considered “normal” in society. But in other ways, I wonder if I was always meant to have the personality I have today, whether disabled or not. I certainly hope that’s true – I’m definitely a fan of who I am now, for better or worse.

But that gregarious child, the one who some part of me remembers being and yet my memory has blurred out the edges of – I wonder about her every once in a while. For better or worse.

*

One of my oldest friend’s mother’s – who also happened to be a teacher’s aid in my elementary school – recently described one of the first times I independently fed myself out of the hospital. It was chocolate pudding. I successfully spooned mouthfuls of delectable chocolatey goodness into my mouth, most likely with the aid of an adaptive spoon that I could easily grip with my semi-spastic right hand. I was then shown my reflection in a mirror; when I saw that I had chocolatey goodness all over my face, I immediately burst out crying. I laugh at that image now, as I know exactly what I must have been feeling at that moment: that it was so totally, utterly unfair that other kids in my class could eat chocolate pudding without looking like they had face-planted in it, and I, apparently, couldn’t.

I’ve often thought of that girl with chocolate pudding all over her face. She had no idea that her life would turn out so good – after all, she just wanted to be like everyone else. That girl didn’t know that her voice would come back, eventually, so that she didn’t always have to burst into tears when she couldn’t find the words to express herself (but she often did anyway). She didn’t know that she would come to identify with the stories she read on the bus on her way to school in ways that felt as real to her as time spent with family and friends. She didn’t know that she would graduate high school, and then university, with an innate sense of expectation and accomplishment that would spur her on to learn new things every day, often choosing to retreat into language over interacting with others.

She didn’t know that she would find a voice, another voice, which was ultimately more powerful than any other physical voice that came back to her. And she certainly didn’t know that, twenty-three years later, other people would be paying attention to what that voice had to say.

That timid little girl with pudding all over her face was afraid to put herself out there, because if she did, she was afraid other people would laugh or feel sorry for her. She eventually did put herself out there – slowly but surely – and some people did laugh, and others did feel sorry for her, but those reactions only made her stronger; they did not break her. And it was scary (it still is). She often wishes it was easier, and she still feels like crying sometimes. For the most part, though, the benefits that have come from putting herself out there have far outweighed the negatives.

She chooses to remember that little girl when she goes to sleep at night. She also didn’t know that that gregarious little girl – the one she thought had been lost – would come back to her one day.

That, really, she had never left.

“Maybe there’s something you’re afraid to say, or someone you’re afraid to love, or somewhere you’re afraid to go. It’s gonna hurt. It’s gonna hurt because it matters.” – John Green

Why doing more by doing less is the best lesson I’ve ever (re)learnt

Yesterday was my three-week anniversary at the Guild. It’s been a blast.

I also likely haven’t been this emotionally exhausted since… well, let’s just say I’ve probably blocked out that time period.

Writing is hard. Every writer knows this – and if you know a writer who says it isn’t, they’re lying through their teeth. Writing about yourself, though (or, at least, about a topic that makes up a large chunk of your identity), is even harder.

I expect a lot of myself. I know this; it’s a curse that I’ve been born with, and for all intents and purposes I’ve learned to live with. It’s what has got me through my Masters so far, so it can be a benefit. But it can also act as a virtual paper shredder; for every word I write, at least twenty more words have been turned over in my brain and evaluated for their usefulness. It means that writing, for me anyway, is more an exercise in literal and mental editing than in actual writing; it means that I often erase more words than I am left with in the end. It means my process often consists of writing a sentence once, taking a word out, coming back twenty minutes later to write the same word in again, only to take it out the next day, to ad infinitum, five days a week.

Which is exhausting. Especially when you’re a perfectionist, which I happen to be, so I’m never perfectly satisfied with the end product.

Oi.

*

MWG hosted a meet-and-greet event for me last week which involved a lovely mixture of cakettes, punch, and intelligent chatter that one can often only have when in a room full of like-minded – and often semi-introverted – fellow artists and writers (and really, what more can a girl ask for). I was asked a lot of questions regarding how the residency was going, and I answered honestly, for the most part.

In the afternoon, a Guild board member quickly popped in to get in on the proceedings (she was especially fond of the punch) and I related to her the rote of things I’m planning to accomplish during my residency. After I finished she answered, “That sounds like a lot,” complete with a knowing smile.

I’m not much of a touchy-feely person (I had only met this person once before), but I was compelled to hug her at that moment. I didn’t, but I should’ve.

However, her words didn’t leave me for days. As a direct result and after a long weekend of finishing two books, season three of Breaking Bad, a half-season of Veronica Mars, and more sleep than I’ve had in months, I’ve had serious time to reconsider my productivity this summer.

I can’t do everything. Part of me has always known this. The stubborn part of me, though, usually chimes in at this point to tell me that I should, and I should do it especially because society doesn’t expect everything – and, at times, anything – from me.

This week, I’ve decided to let my better half win out. Next week might be – and probably will be, knowing my track record – a different story.

But, fortunately, I’m surrounded by people who will, quite likely, pop up out of the blue to make me reconsider.

And that next unsuspecting person might just get a hug out of me.

“Our sense of worthiness – that critical piece that gives us access to love and belonging – lives inside our story.” – Brene Brown