The Summer of the Thesis Proposal…and Star Trek

This summer I began two journeys. The first one, as many of you know, was to begin my thesis proposal. In many ways, writing my proposal is one of the hardest things I’ve ever done. Getting my ideas on paper has never been that difficult for me, but then again, I’ve never had an idea that has been with me for over twenty years. Getting that out on paper…well, that’s another story.  

And then there’s another journey: I decided to watch Star Trek. For the first time. And it’s been a trip.


As I’ve written before, my lovely Grandma Joyce died about two months ago now, five days after my thirty-first birthday. A couple of weeks ago, I also experienced a confusing falling-out with a new friend. Both of these situations shook my confidence to its very core. I learned from the experience, but it was hard.
They were formative experiences, but at times I couldn’t understand why they had to happen when I was already so vulnerable.

My thesis proposal has brought out so many vulnerabilities in me already. I’ve had to ask myself the hard question about what has made my life different from so many other’s experience. Having disability be the number one difference seems like a bit of a cop out at this point; and yet, it’s also the truth. But another thing was different: I read. I read anything I could get my hands on. And through reading, I was introduced to new worlds and states of being other than my own.

This was my big “aha” moment.

Which is, essentially, what Star Trek is all about. Gene Roddenberry’s vision was to introduce characters that were different—literally alien, in some cases—but were still accepted. That element of the unknown that so many people today are fearful of: that was embraced, flaunted, and even celebrated.

That’s the kind of world I want to live in. That’s the kind of world I’ve been part of every night for the last two months.


Stories have an amazing capacity to build us up when we’re down. That has been my experience this summer, and it’s been a learning experience. I’m sure many people thought Gene Roddenberry was crazy, because he just wanted everyone to get along despite petty differences. But that view of the world, although it sometimes seems far away, is exactly what we need to get by.

And sometimes having a disability is just like being lost in space, or showing up unbidden on a planet that has never seen the likes of you before. And that’s kind of cool.

The Importance of Grief

My dear Grandma Joyce died two weeks ago tomorrow.

I miss her more than I ever thought I could.

Grandma Joyce was wicked funny. Once when she woke up from a particularly hard surgery she said, “I’m so hungry I could slit my own throat. Oh, wait: someone already has!” She never missed an opportunity to tease her grandchildren mercilessly. (When I happened to slip my cell phone away between my legs when I was visiting her, she instantly replied, in no hushed tones, “It looks like you have a penis.”) Her favourite joke lately was to respond, after being asked what she was up to the last few days in her residential home at Concordia Place, “they roll me this way, then they roll me that way.”

She was up-to-date on the news, reading the newspaper every day even when her eyes began to tire easily. When I told her about Trudeau’s tussle in the House of Commons, she chuckled and said, “I remember when they used to chance his father through the streets.”

She was an avid reader, which is what I find most incredible. With six children, and after being married young, reading is usually one of the first hobbies to go to the wayside. But not my Grandma Joyce. At the lake, when she appeared to read the most, I would ask her about what she was working through at the moment. I remember I asked her once about Atonement and she stated that “the first half was kind of slow.” In her eighties she was still a devout literary critic.

She didn’t have a good life all the time, but she loved her life. Her outlook was incredible for an eighty-nine year old. I would allude to some of my worries, and she would shrug in a “what can you do” so of way. She wasn’t being dismissive, she was counting her blessings. And mine. Four out of her six kids still lived within a ten minute radius of her family home. “I’m so lucky to have people near me,” she would say.

We were the lucky ones.


I have started keeping a journal lately. This is what I wrote after attending her funeral:

“I think of Grandma: a whip-smartass farmgirl, married at 19 with a handsome husband who had been to war. I wonder if she felt worthy of his love. I’m sure she was intimidated by this man, even though she loved him. I hope she saw herself in female literary heroines. I’m sure she had no idea what she was doing, sometimes, and I hope she found solace in living through these women. Even back then, she carried her family’s heritage on her back. She faltered, sure, though anybody would have. She was a woman of her generation. She was one tough cookie.
I miss her so much. I want to know how she did it.”

How Having the Best Intentions Sometimes isn’t Enough

I admit I can be a fairly proud person. I like people to see me in a certain way: strong, independent, smart. Witty. Cute. Fun.

I was hired as a Research Assistant at the University of Manitoba this past February. The job is fascinating with a steep learning curve: I’ve written and edited a book proposal, a literature review, a big federal grant application and numerous articles. I love it, because I’m learning so much and feel so important to finally have a job directly related to my field.

I’m in heaven, basically.


I’m been sitting on this post for a number of days now, because I don’t like criticizing people. I have a hard time standing up for myself, because I know that more often than not, people with the best intentions would never want to hurt or offend me.

However, society inevitably seems to be set up this way, and I get knocked down a peg. Which isn’t fair to me, despite someone’s best intentions.

It wasn’t even that big a deal (but it was, I realize now, because I’m still thinking about it). My colleagues and I were in line for lunch, and I happened to see someone I knew from a totally different realm of life. They also happened to be part of the medical establishment – in short, they knew a part of my medical history. Anyway, immediately this person reached for my hand in an intimate gesture as it lay next to my wheelchair controller. Without really noticing what I was doing but feeling awkward nevertheless, I moved away from their touch.

Harmless, right? Right. I couldn’t help but notice that my colleagues had moved away from myself and this person, though. They were likely trying to allow me my own space to say hi to them, but I also felt like it was a commentary on how this person was treating me. Would they have reached for my hand so intimately if it wasn’t right within their reach? Was talking an octave higher normal for this person, or was it because she was seeing me a certain way? In other words, was she addressing me any differently than she would have another one of her former “patients”? If so, why?

These kind of thoughts keep me up at night. I only tell this to you now because this is the reality of being a disabled person, or basically anyone perceived as different. And it’s especially prevalent when there’s some kind of power imbalance, which there usually is between a disabled person and a nondisabled one.

I tell you this not to shame that person. She was only saying hi, after all, and who knows if the intimacy with which she greeted me was mildly inappropriate for the work setting we were in or not.

All I know is that in front of my colleagues, I felt shrunken. These were people I worked with, after all. I want them to see me as capable.

And I hate feeling that way, despite someone’s best intentions.

But best intentions don’t always make things right.

What is an autoethnography?

It was after reading Simi Linton’s My Body Politic in the fall of 2013 that I had my first “eureka” moment as a grad student. Linton writes about becoming a disabled woman, and how it’s a process, not something that happened automatically. In other words, she didn’t wake up in the hospital after being paralyzed and was well-adjusted to her new disability. She was devastated. But after being treated as a patient for too long, she began to get mad. That’s when she began to realize that her existence as a woman with a disability wasn’t just a biological fact, but a political one. She would choose how to live her life, not the doctors that treated her.

Anyway, Linton speaks so candidly about her life that I all but dived into her story. At this point, after choosing disability studies, I knew that I wanted to do something that brought together my love of writing with my love of disability, but I didn’t know what form that would take. The idea that I would write my story was terrifying. Who would read it?

Face-to-face with Linton’s narrative, though, I knew my fate was sealed.


This summer I’m working on the proposal of my thesis. It’s an autoethnography, and when I tell people that their eyes kind of glaze over because it’s one of those academic-sounding words that just sound intimidating. It just so happens that autoethnographies are, excuse me, the shit, but they are also intimidating. Think of an autobiography with theory to back up your position in the world. Think of an autobiography quoting feminist, queer, and disability studies scholars who are writing about something you have actually experienced. Doesn’t that sound cool?

Autoethnographies are based on vulnerable narratives. They are a kind of writing that is meant to highlight not only the experiences of the writer, but to make those experiences universal. I don’t know much about anthropology, where the term “autoethnography” comes from, but I wish I did. I think looking into minority groups and voices and seeing where we fit into those experiences – rather than where we diverge from them – is the key to successful understanding.

But I digress.

This is what I’m doing. I’m writing an autoethnography. I’m going to write about my life in a way that I hope many people from many different walks of life can relate to it and find just the teeniest bit of similarity with their own life. It’s going to be scary, and it’s not going to be easy. I don’t particularly like being vulnerable; it’s not something I’m comfortable with yet. But I’m learning, I’m growing.

And by doing this, by writing my way through it, I think I’ll manage.

(Do you get why I’m obsessed with stories right now?)

Why I’m back/Why stories matter

Hello, virtual world!

I’m back.

I’m back because I’ve missed you.

I’m back because…well, let’s face it, I always knew I’d be back, deep down. Even though being back terrifies me. Even though I’m both scared out of my mind and deeply humbled to share my little crippled heart with you again. Humbled that you want me to share my little crippled heart with you.

The last two years had been…interesting. To say the least. I turned thirty. I’m still single. I have another niece. Everyone in my life right now seems to be either getting married or is pregnant. The typical thirty-something story.

The biggest news, though, is that I completed all my courses for my disability studies Masters a wee few months ago. I’m now working on The Big Scary Thesis. I’ll write my proposal this summer. Or that’s the plan, anyway.

Which is where you come in. I’ll be writing an autoethnography for my thesis and, for lack of a better word, I’m scared shitless. (This is what it is to be in your thirties, I think: you’re pretty much scared shitless all the time. But you’re a grownup now, so you have to hide it.) I know I need another outlet, though, other than pouring myself completely into that project. Otherwise, I’ll shrivel up and never leave my apartment again.


The last six months, I’ve become obsessed with podcasts. (Basically anything Radiotopia puts out is pure gold.) It’s got me thinking about stories. Stories people tell, and why they tell them. Funny stories. Sad stories. Happy stories. Vulnerable stories.

Basically what I’ve realized, though, is that they’re all one and the same.

We need stories in order to live. Stories give us a sense of who other people are, and who we are.

And that stories that aren’t often told are the best ones.

Which is exactly what I want to do with my life. I want to let other people know that, as a disabled women, I like my life. Sometimes it sucks, and sometimes it’s great. But everyone’s life is like that. So why should mine be any different?

I’m here to share my story with you. Why?

Just because.

Because I kind of need to.

(I’ve written about how disabled narratives are a form of empowerment before. To read that post, go here.)

What I’ve learned

I found out last week that I completed all the hours for my Writer-in-Residency early. So I have a week to close up shop, as it were, and prepare myself for another semester of grad school (which I’m actually very excited about, nerd that I am). I’ve also been reading like a fiend in anticipation for my return to school (and not having any more time to do so).

I’m sad to go.

I’ve joked with a friend that this has been, and will always be, the best and worst summer of my life. The best, because I’ve made some awesome connections and know now what my dream job feels like. The worst, because it was so much more … well, everything … than I thought it would be.

Not that that’s a bad thing. Just that … a girl has her expectations (I’m dealing with it).

Here are a few things I’ve learned:

1) Exchange District = best place in the summer to work in Winnipeg.

2) Iced lattes will burn a hole in your pocket eventually.

3) Meeting with writers to offer critiques is a yoyo of ups and downs. But it’s always worth it, especially if that person takes away even half of what you’ve told them.

4) Writing is life work. It is not just sitting at a computer and typing little sweet nothings onto your keyboard for your hardware to store for a rainy day. It is soul-crushing, annihilating, exhausting, and mind-numbing work not for the weary of heart. Only once in a blue moon do you actually feel satisfied with what you’ve written that day, and it may be only a sentence. Or a word.

You will shed more tears and layers of yourself than you ever thought you had in you to shed or tear away.

So why do it, you ask?

Last week I said because I have no choice. I’m not changing my mind now, but there is one more element that I didn’t have time to touch on.

And that is I truly believe that words have the power to change one’s very existence.

It is why I chose to write my little crippled heart out this summer, and it’s why I’m going to continue to do it. I don’t know of any other way.

Nor do I want to.

“There would be punishment and pain, and there would be happiness, too. That was writing.” -Markus Zusak

How writing isn’t a choice

There have been a bunch of kids in the Writers’ Guild classroom this week. It’s had me thinking about why I’ve made the choices I’ve made in my life. Mainly, the choice to write.

And how it’s not really a choice.

Which I find both comforting and terrifying. Comforting, because it’s a confirmation that I have something to say that wants to come out. (Dealing with the knowledge that I have something to say has been more psychologically taxing than few things I’ve ever encountered, not to mention trying to discern what it is, exactly, I have to say. But that’s another topic for another day.) Comforting, in that there is an outlet available to me to get that out. Comforting, in that I don’t have to keep all that inside me.

Terrifying, because I like to be in control. And letting go of control is pretty scary.

But it’s not like I have a choice in the matter, anyway.


The first time I was in a creative writing workshop I was twelve years old. I don’t know if I knew what I had to say at that point, but more just that I wanted to say it.

On one hand, I idealize that twelve-year-old. She knew there was some force within her, and was taking the strides necessary to make it come out. She was definitely a bit naïve, but still strong. Stronger than she knew.

But she was scared, too. She was scared of this thing she knew she had to do and didn’t know if she was any good at and she was scared no one would talk to her when all she really wanted was approval that she was allowed to be there in the first place.

Not much has changed in, erm, seventeen years.

But there has been progress. Some headway has been made; there’s more of a direction to follow. And it’s still scary, but at least there are some lampposts to guide the way. They’re dim, but they’re there.

But if there was never a choice, then I can give myself some slack. Because if I didn’t have a choice, then I’m irrevocably meant to be the kind of writer I am now, at this very moment, and not mess with the things I think I should be by now. (And, who am I kidding, scrap writer for person.)

I can only be who I am. And follow the journey. Not map it out, but follow it.

And watch the show.

“It’s why I am a writer – I don’t say ‘decided’ to be, or ‘became’. It was not an act of will or even a conscious choice. To avoid the narrow mesh of [someone else’s] story I had to be able to tell my own.” -Jeanette Winterson, Why Be Happy When You Could Be Normal?

How losing gets a bad name

I just got back from five days of watching tennis in Toronto.

Yes, I did say tennis.

I had a great time. It was fantastic just sitting in the sun in the Rexall Centre watching hours upon hours of superb athletic performance. What drew me to tennis in the first place was that it’s as much a mental game as it is a physical one, and you can’t win a match by only playing a physical game or vice versa. You can be the best player in the world, but your head can be somewhere else, and your opponent will use that against you. And they will win, more often than not.

Which is exactly what happened during the second match I saw on Wednesday. My absolute favourite player got beat pretty bad, all because his head just didn’t seem to be in the game. Not only that, but the guy who beat him went on to win the entire tournament.

It was a classic underdog story. As I often consider myself an underdog in life (for better or worse), it was quite gratifying to see.

It also made me think, though, about how hard we try to “win” in life. When, more than we would probably like to admit, it’s just not our time. That, and winning never really looks like what we think it will. And so even when we lose, we aren’t actually losing out on anything other than what may have been.

What we need to focus on is the process, not just the end result. I imagine that’s how this guy won the tournament: by looking at the big picture, as hard as that might’ve been at the time.


I’ve tried to stay away from portrayals of the “woe’s me” disabled person in this blog, but I will be one of the first people to readily admit that the disabled life is hard. It’s hard because we are often praised just for showing up and aren’t really expected to do our best, and are still told that’s enough. It’s hard because a lot of us walk that fine line where we have to justify being “disabled” in some circumstances but “not disabled enough” in others, often within the same day. It’s hard because most able-bodied people have never even considered what it would be like to be disabled (even though, if everyone lives long enough, the likelihood of becoming disabled at some point is pretty high), and so they will say something that doesn’t make a lot of sense just because they’re flustered. Or worse.

But it’s especially hard because the world we’re all familiar with was made for people walking on it to thrive.

And the ones who can’t often feel like the losers; that in the game of life, we didn’t really make the cut.

I say all this because the last night in our hotel, we met a girl with her mom and grandmother in the elevator. She was likely eight or ten years old and was being pushed in a buggy-like stroller. I didn’t notice until later that she had bandages on her legs. And when I got out of the elevator, she just stared at me. Curious, and maybe a little envious.

This beautiful, beautiful girl. Staring. At me. Like all she wanted was just to be on her own in an elevator.

I can still remember her eyes, because I had seen them before.

I didn’t know anything about her life, but when we made eye contact, all I wanted to do was tell her it would be ok. Whatever she was going through, whatever she was feeling, was only going to help her in life. Mostly I wanted to tell her she wasn’t losing; far from it.

She may not have felt like she was winning, especially not if “winning” was based on what it looks like on tv. But it never really looks like that in the grand scheme of things. That doesn’t mean she would be constantly losing, though, either. Winning would just look different.

It would look better, actually. Maybe not at the time, and maybe not right away. But it would be winning, in the bigger picture.

It was a small exchange, and there were no words spoken between us. But I’m telling her now: don’t worry about winning. In the end, winning is nice, but it will rarely ever meet your expectations.

It’s all in the journey. That’s where the real winning takes place.

Why my body is not a narrative device

I just read a wonderful article by Christopher Shinn that appeared in The Atlantic last week. In it, he argues that disabled actors need to be cast in disabled roles. I’m not going to say anything more, because you should just read it.

And you should read it because he’s being brave and real and putting himself out there even though he’s part of the culture he’s writing about (he’s the head of playwriting at the New School of Drama in New York), and that takes major guts. It’s what I’m trying to do with this blog.

You should read it because it hasn’t been said enough. And those are the kinds of things that tend to be the most important.

Needless to say, I completely agree with him.

I agree with him because, if there’s one thing that really bothers me, it’s this notion that disabled bodies are this metaphor for loss, suffering, weakness, and all the other negative things that nobody else wants to embody. We are used in film and literature alike not as a supporting role but as the role. As if our lives have to revolve around the fact that we’re disabled.

I’ve been struggling with this in my own writing as well. How can I possibly celebrate disability when the main character has gone through some really awful things in her life? How can I emphasize the agony that disability can sometimes be, while at the same time portray that it’s not as big a deal as everyone thinks it is; when, in those precious moments, the disabled experience is actually quite fun and enjoyable?

It feels like I’m at a crossroads of sorts, one that seems oddly familiar, maybe because I seem to be circling around and around the issue without ever getting a satisfactory answer.

But maybe it’s the issue that needs reframing, not my examination of it.

The disabled body can be a rich metaphor, one that is made up of trauma, adversity, achievement, and despair – the list goes on and on. And as a culture, we seem to love our metaphors (especially English majors, a.k.a. me). We like our stories. We can’t really help it.

But the important part is that the metaphor ends somewhere. A metaphor in and of itself should not be just a metaphor – and if it is, that’s a pretty weak metaphor. It should not automatically be assumed that the vessel for the metaphor is any or all of the attributes thrown at it.

Basically, just because a disabled body may look weak, or vulnerable, or abnormal (with a dash of freakery thrown in there for good measure), doesn’t mean that’s the reality. Metaphors are used as a narrative device. They should not be perceived as truth just because metaphors are the Key to All Things Literary and, therefore, should be revered.

Disabled people are people, after all. They are not made-up beings that only appear in sappy films and books where the disabled person is there to make the other supporting characters look good and like they have all their shit together. They are dynamic. They live and breathe. They screw up. They love. They hate. They are not only one thing at a time.

Nobody is.

But this seems to be how disabled people are type-casted. I hope that’s changing. In fact, I think it must change in order to, you know … move on from the land of perpetual metaphors.

I’m not saying it will be easy, and in fact English majors may have the most difficult time with this (that’s ok, as we’re awesome in other ways). I’m only saying that it’s necessary.

Because that feeling of watching a movie where the main character is disabled and you feel all awkward once the lights come on, knowing that your body was used as a symbol of weakness and fear?

That sucks. And it sucks because it’s not real. That’s only part of the story.

And if anyone is most likely to get it right, guaranteed it’ll be the person who has lived it themselves and not someone who thinks they’ve lived something like it.

How the thing that scares you to death can pay off, part two

Yesterday, I printed off the first thirty-three pages of my novel for editing. I was equal parts ecstatic and terrified. And, also, weirdly emotional.

I quickly realized that I was so emotional because those thirty-odd pages are the blood, sweat, and several bucketfuls of tears I have accumulated in the past two decades. I also realized that it is only now that I am at a point where I finally feel like I can share them (hence the equal parts ecstatic and terrified).

Which has been a process I can’t even put into words. Maybe there are no words. Maybe I’ll find them eventually.

I am quite certain, though, that there are some words still to come that will surprise even myself. Ones that will be terrifying and beautiful and brilliant and downright chilling all at once.

But for now, I’m just surprised that those thirty pages came out. Period. And, yes, in their current form, the words are real and raw. They require smoothing. But that’ll come. I can’t ignore them anymore by pretending they don’t exist because they’re here, staring me in the face, unblinking. They will not be the first one to turn away. I’ll be forced to look at them, analyze them, shape them.

I’m horrified. I’m also thrilled beyond words.

The past few months I’ve had the curious sensation that I’ve been holding on (to what I’m not quite sure) for dear life. My mood has swung the full pendulum, sometimes multiple times a day. I’ve been sick. I’ve laughed till my stomach hurts. My tear ducts have felt like they’ve been sucked dry. I’ve felt emotions so visceral they can’t be described.

But, deep down, I know I’ve wanted this all along: this life. As a writer.

I’ve heard former U of W creative writing alum Katherena Vermette coin the brilliant phrase living life as if your fingernails are cut too short. (If I were Facebook friends with her, I would ask permission to paraphrase her so blatantly. Unfortunately, I’m not. I hope she doesn’t mind too much.)

That’s what I feel like I’ve been doing. I kind of love it.

I’m choosing to love it, even though sometimes it’s hell. If I’m honest, most of the time it’s hell.

And the funniest thing is, I’ve just started down this road. I don’t know if that should make me laugh or cry, or both at once.

But even if I come out of this with the shortest fingernails on the planet, I know I have to do it. It might not be fun, but it’ll be worth it. Some part of me has always known that. I’m just living it now.

But I’ll keep holding on. And maybe, just maybe, the words will save me.

In many ways, they already have.