Wednesday, January 25, 2017

Socks



Let's talk about how different facets of health intersect (I don't see the campaign today in an unproblematic light given its corporate connections, but visibility is so critical that an awareness day can't hurt). When I first bought the skein I knit these socks from, in October 2014, I darkly joked that these were going to be my "s.a.b.l.e. socks" - the acronym meaning "stash acquisition beyond life expectancy," a term crafters use for folks who have a tremendous quantity of yarn, fabric, or whatever might be their medium of choice. When I got this wool, however, I had perhaps a half dozen balls of yarn in my collection. I was brutally sick that fall, having just been diagnosed with #neuromyelitisoptica - a rare autoimmune disease that resembles severe MS. I asked my neurologist what he thought my prognosis was. He couldn't tell me, and the stats I found online for my condition were pretty grim. As my health declined in ways I couldn't have imagined, I feared I wouldn't live long enough to make more than a couple more pairs of socks - let alone write a PhD thesis. My poor hand function meant that knitting was excruciatingly slow and often painful, so I figured that a small amount of yarn would last me the rest of my natural life.
The people around me saw the physical manifestations of my condition (not hard, as I was driving a conspicuously large scooter or, on good days, shuffling about with a Mussorgsky-themed walker). But only a handful of friends made space for conversations about what I dealt with emotionally. It was not just the physical illness that felt like it was literally killing me - I also feared that my declining mental health would bring me to a breaking point. A physiotherapist told me I'd never walk again, and at first I actually accepted that as not a huge deal - I figured I could cope with that, if only I could find a way to not wake up with a sense of dread each morning, and if only my physical disability weren't so isolating. If only the friends who'd pulled away that fall became close again, if only I could trust that my thoughts were my own rather than the product of a cocktail of medications.


Partial paralysis was a physical challenge, but the emotional impact of an acquired disability and its social consequences was devastating. I sought counselling, but the resources available to me were limited - my family was supporting me in paying for physiotherapy, and a therapist would have been more than we could do at one time. The health centre at my university allows for six counselling sessions per student, and I maxed out on those much earlier in my illness; instead, when I begged for help shortly after my worst relapse, I received one short session in which the counsellor repeated how resilient I was, then referred me for group therapy - something I'd have liked, if the group were targeted for people in my situation, but it was a general anxiety group for stressed out students, and they were coping with different issues than I had. The hospital social worker encouraged me to move back to Toronto to be closer to my family, but that would mean leaving my friends, a new choir, and the cat I fostered. Plus, our home there isn't wheelchair accessible. I was too scared to tell most people that I alternated between wishing that I were dead, and being terrified that I'd die before I was ready. I was afraid that if I didn't act optimistic and inspiring that my friends would drift away.

So for a long time I associated the yarn I'd bought with the challenges I had at the time. It was well over a year before I got it out of the closet to cast on a pair of socks, because of the emotional weight that I'd bestowed on this bit of fibre. It took me another few months to finish the knitting project. I've been relapse-free for nearly a year now, and just finished them before the holidays. I'm in a far better mental health situation now. So, I guess these are now my "stable" socks.

Thursday, October 20, 2016

The vertical edges of the stairs: a late-night rant about accessibility and academic buildings

On many university webpages, photographs of heritage buildings take centre stage. Old buildings speak to us, with weathered walls lining weathered halls, and hardwood floors trampled to a patina. I love seeing echoes of the past - even the gnarly bits. But here’s a gnarly piece of the present, and future: our fetishization of these lovely old buildings means that some of us cannot get inside. Indeed, the squeaky staircase with intricate railings is gorgeous. But it’s a monument to an inaccessible past, and a barrier to my future. Where you see the horizontal boards where your feet will land on your route upstairs, I see the vertical edges that could one day confine me to the ground floor, or exile me from the building.
Let’s put it starkly: if you do not build an elevator, I might not have a job. I want nothing more than to work as a historian, in a university. Researching and teaching about the past drive me. In a couple of years, I’ll likely be searching for an academic job. This is an uphill battle for anyone working on a PhD in the humanities, and we don’t all succeed. However, I have a disability, and can’t count on always being able to walk. In my field, that is a massive additional barrier to employment, by virtue of the built environment. The pool of jobs available to me will decrease with every step I cannot climb. Many universities have dozens of lovely heritage buildings: buildings where the toilets have personalities of their own, and none are wheelchair accessible; buildings with ornate staircases, and no elevator; buildings that are important, apparently, but not important enough that I have an equal right to access them. 
When you use heritage as a justification for not making buildings accessible, we are situating the value of that space solely in the past. You are also commemorating a history that prioritizes the voices and activities of those who can climb stairs, open doors, and move easily through the spaces in our community. When you tell me that you can’t bear to change a historic building, you are telling me that you value the aesthetics in commemorating privileged lives over and above taking steps towards universal access. Claims that a building simply “can’t” be made accessible are, by and large, oversimplified. It’s not that you can’t - it’s that you won’t prioritize it. Organizations instead allocate budget lines to maintaining an inaccessible status quo, claiming to have too many other important projects, to being stretched thin. But disabled people are stretched thin, preparing for plan B, plan C, plan D, plan E, arranging and rearranging our lives to compensate for other people’s reluctance to plan. 
We need allies. Ask about accessibility, even if you think it doesn’t affect you personally. If you have a job in an inaccessible building, take the responsibility to push for changes in your workplace, so that mobility isn’t an unofficial requirement for those who work with you and learn from you. Institute a policy to hold events only at accessible venues, even if those spaces are more expensive. Remember, too, that your own mobility is only temporary. Bodies change. Buildings should, too.

Tuesday, April 12, 2016

Let me be bitter

I've recently read a few things on the internet that rub me the wrong way. Somehow there seems to be a culture that moving on from something difficult necessitates gratitude - I find this jarring. I'm frustrated and short of sleep, so this won't be the most coherent post on here.

"To the person who told me I wouldn't amount to anything, thank you."
"Why I am grateful to the bullies who _______."

There are a few articles with this sort of theme floating about online (The Mighty seems to be one of the worst offenders for this). I'll respect that some people approach their experiences this way; that's their prerogative. But it almost reads as though gratitude is the default, healthiest way to heal. And it's troublesome.

It goes a step far in Carmen Aguirre's recent article [TW - she describes her experiences of being raped as a child] in the Guardian. She thanks her rapist for teaching her about compassion. Now, I don't want to censor her experiences or how she presents them - but at the same time, it frightens me that her words could be taken by a predator as justification for their actions. Any rational person would know it isn't, but rapists aren't rational people - they're entitled people, who will take anything they can get and some things they cannot.

The classmates who bullied me as a child didn't teach me that my individuality is worth more than their opinions. My friends and my family taught me that. The bullies did their best to teach me that I was worthless and would never be cool enough to be loved. I learned to persevere in getting the health care I needed by being affirmed by the professionals who got things right, not ignored or belittled from the ones who got it wrong. And most of all, the man who raped me didn't teach me to be sensitive to my body, be compassionate, or anything positive. I could have learned these things through joyful experiences, not rape. Instead, he taught me to always look over my shoulder, to investigate every bump in the night, to incessantly check whether the door was locked. He taught me to assume by default that people showing interest in my body were violent by default. That my body was a thing he could abuse at will. He taught me that I would never, never truly be safe. Nobody should have to learn these things. I will not thank anybody for showing me these things.

No girl should ever come of age by having her body violated.

Wednesday, January 27, 2016

It's not actually about my feelings

A couple of months ago, I posted about a fellow grad student who has been harassing me for some time. He graduated at the end of the last semester, so in theory, he should be gone and the situation should be over. Not so. The first time I came to campus after the holidays, I ran into him a half dozen times. This may be coincidental rather than stalking - I have no means of judging his intent. But it's scary. He still has access to graduate office space and computing facilities, and someone in the department has employed him as a research assistant. So, I wrote to our chair to voice my concerns.

The chair met with a university conduct officer. Apparently, my options include going through human rights (tried that and failed), speaking to the ombudsperson's office (ditto), working with the campus safety officer (which I plan to do, though I'd hoped to resolve this at the departmental level) and speak with the guy's supervisor at his other job, in the hopes of changing his behaviour there. None of the options that the chair listed included anything that would change his behaviour within our department, where he is still present.

What irks me most, though, is that my chair's response focused on what could be done to address my feelings about the situation. Not addressing his behaviour, his ongoing presence. I don't need a safety officer to speak to me and try to get me to feel less afraid. I need someone to address the actions that are making me feel afraid. This is about harassment, about intimidation, about power - not about my individual feelings.

If someone was flicking a lighter menacingly at somebody's home, you wouldn't tell the homeowner to talk to the fire department about their fear of fire. You would speak to the lighter-wielder about the dangers of their actions, and potentially ban them from the vicinity.

As a woman, I will probably always be afraid of harassment. I don't truly anticipate that changing. My fear will go away when the harassment stops.

Friday, November 27, 2015

PTSD and higher education

Today, my department hosted a panel on mental health in university classrooms. Super necessary, and for the most part, reasonably informative. This was probably critical info for people who don't have much background in supporting students with mental health disabilities. The first two presenters were clear, and offered an overview of available resources that we could refer to. The last one, however, I feel was very problematic. The main part of his talk was ok - not the approach to accommodating students that I personally would have used, but it was fine. The trouble was after a faculty member asked what he thought of trigger warnings.

Our guest speaker doesn't like trigger warnings, because he doesn't find them effective. OK, I can see that, because they really aren't as effective as we'd like to hope they could be. The trouble I had was in his conceptualization of PTSD. He has been diagnosed with PTSD; so have I. We clearly have different experiences of it, but also different conceptualizations of the condition. I am distressed that he made out his perception to be indicative of everyone with PTSD.

He told us that people with PTSD are less sensitive than other people; numb. To a degree, yes, that's true - but we aren't numb to recalling our trauma. Instead we're numb to so many other things around us. He said that people who respond emotionally to depictions of trauma (and in this case his example was rape) don't actually have PTSD, but are merely upset about what happened to them. That's where I vehemently disagree. He talked about triggers as, for example, the little things - like if you're assaulted and you can smell onions nearby, you might be triggered by the smell of onions. And, yes, of course you might be. But that doesn't negate that you might still be triggered by, for example, a movie screened in class with a rape scene.

When PTSD was a challenge for me (it's not so bad recently), I could be triggered by little things that you'd never guess: things that were in the room at the time, that remind me of things he or I were wearing, smells, the pattern of the floor tiles. Things that I could run into, without warning, in a huge range of situations. They are bizarre, and specific to me and my experience. But I could also be triggered by perhaps more obvious things: the facial expression and body language of a man who knows he is about to get his way; phrases that connote pain and struggle. The sights and sounds that are fairly specific to rape or other bodily trauma. And lots of survivors, even with quite different experiences, will still find these things triggering. Think of if you break a glass: just because there are small fragments that end up under the oven that you find only years later does not negate that there are also fragments right there, under your nose. You still have to be careful not to step on any of them.

Monday, November 23, 2015

Police

A friend and I were talking today about the assaults at UBC, and how we need a coherent sort of policy/procedure for dealing with sexual assault in our department. I asked her whether she'd know what to do/who to approach if she were assaulted by someone at school; she was pretty quick in saying that she'd go to the police. And on one level, that makes sense, because that's what we're taught to do. But to the best of my knowledge, many (all?) the UBC women didn't approach the police, initially. As an assault survivor, that makes more sense to me. 

With other crimes, when you talk to the police, you are a plaintiff, a witness, and so forth. In rape cases, your body becomes a crime scene, disembodied from the rest of you. That's where the trouble is, to me, in going to the police: I didn't go, because I didn't want the terrifying scrutiny of every inch of skin that reporting would entail, when I had already been so violated. I didn't want to be a patchwork of pieces of forensic evidence, didn't want photos taken of everything that was bleeding and torn. Because once those pictures exist, you become bleeding and torn, in the eyes of the law, and yet are also scrutinized as a potential liar, with your body being what they use to judge your character and the veracity of your claims. 

It's supposed to be criminal justice, but it just feels like an extension of the crime.

Sunday, November 22, 2015

Certain feelings stick like glue

Today, I went to a poetry reading - an event I normally really enjoy when I attend, and I loved the work that the poets read. However, for a reason that I'm not entirely certain about, nobody sat next to me. I came alone, but it was a packed room. There were people standing at the back and sitting on the floor at the front, and yet nobody sat down next to me. Odds are it's nothing, but after being the kid who nobody wanted to sit next to or play with, that empty seat hurt in a way that, years and years later, I can't even quite describe.

Saturday, November 21, 2015

If it happened here, there would be little difference

A disturbing article came up tonight on CBC, regarding the University of British Columbia. UBC expelled one of their history PhD students this week, after half a dozen of his classmates came forward with reports that he had assaulted them over the past couple of years. It took months for the department to do anything, and their chair (a woman whose work I hold in high regard) reportedly was more inclined to cover up the incidents than to do anything about them. As a graduate student in a history department at a different university, that hit home pretty hard.

I will preface what I am about to write by clarifying that there has been no direct threat to my physical safety within my own department.

In my department, we have an MA student who is rather volatile to his peers. He is the self-appointed ruler of the graduate computer lab, accosting certain other students when we use the facilities. Over the past two years, he's hovered over me and called me an "entitled bitch" while I used his preferred computer (not his own machine, just the one he liked the best - and the only one available when I entered the room), swore at me in the halls as though it was a manner of greeting, blocked me when I tried to navigate the halls using a mobility scooter, muttered "looks like you're getting what you deserve" when I came in once with an IV line for a medical treatment. In short, he's nasty. His poor behaviour, while not physically aggressive, is unwelcome and has been ongoing for approximately two years. Over a year ago, I spoke with my thesis supervisor, our graduate chair, and the university human rights officer. Well, it's not a human rights issue, supposedly. Supposedly, there's no rule against being a world-class jerk to your peers. The human rights office suggested mediation. My supervisor suggested, after he sent me a profanity-laden email, that I ask him for coffee to see if we could work things out (I did, and his emails escalated; she was evidently taking him to be a more reasonable person than he turned out to be). The graduate chair listened sympathetically, but ultimately did nothing that I know of. Nobody followed up with me, perhaps thinking that if they didn't know about further incidents that they could pretend that everything had somehow resolved. It hasn't - I've just gotten fed up with advocating for myself, so instead I've been waiting for him to either drop out or graduate, which should be quite soon now.

The result is that, since April 2014, I have only used the computer lab when I am reasonably sure he isn't on campus, or when I'm accompanied by a friend. I avoid passing his office late in the day when there aren't many people around. Since he works at the library and a couple of weeks ago refused to check out a book to me, I now make sure I don't go to that library location on days when he might be working there. The onus has fallen on me to avoid him so that I don't have to listen to his profanity and insults. I am fairly sure that I am physically safe in the department, but I do not feel emotionally safe there, and have not for some time now.

I am not the only graduate student who has issues with this particular man. He behaves this way to a few other people, and will make quite nasty comments about a particular faculty member to anyone whom he thinks might listen.

I know that this is worlds away from sexual assault. I'm not trying to make an equivalency here. But from the complacency that I have seen from my department, and their inaction in making any sort of tangible change to address his behaviour, I can say that I have exceptionally little confidence that my department would do anything differently.

The faculty I've mentioned here are good people. I like them, and respect them. This isn't about them - if they were personal friends of mine rather than my professors, I don't doubt that they'd be doing what my friends have done (go to the lab with me if I can't avoid printing something so that I don't need to be alone with him; urge me to report incidents; listen to me ranting about the whole situation). This is about an institutional culture that has silenced even some quite justice-oriented faculty, because we work in an environment where a man moving through the program and getting a degree unobstructed is more important than a woman not being berated and harassed.

So in short, if someone predatory (or with a very skewed idea of what constituted consent, in any case) came upon my department, I truly think it would have played out the same way. The question is how to change that culture, so that we can make sure that it doesn't happen here.

Tuesday, October 6, 2015

Draft of a letter to the university administration

This evening, I was dismayed to learn that the university plans to stop paying the benefits, including supplementary health insurance, to union members as of October 31st. I'd be surprised if the union can afford to shoulder this cost - so what this amounts to is leaving the members who depend on this health insurance high and dry. "Dismayed" is actually a poor word choice in this context - no, I'm livid, and terrified.

See, I'm a student with significant health challenges. I have a rare disease that causes spinal cord dysfunction, and all the attendant difficulties that can produce. The benefits provided by supplementary health insurance for someone in my shoes are significant: it means being able to continue the physiotherapy that helps me walk and keeps my pain under control, and significantly, it enables me to be able to relieve myself. And hearing this might make you uncomfortable, but trust me - your discomfort is hardly my concern here when your decision is putting me in danger. For several months, I have needed to use catheters to empty my bladder, which has become partially paralyzed by my illness. These are individually fairly cheap devices, but they add up. They're not re-useable, and I need several, each day. After shouldering many health-related expenses from the past year, when my illness rendered me unable to work, this isn't a cost I can take on without significant hardship. I am sharing my individual experience, but there are many of us for whom this plan is of the utmost medical necessity. This is not a cut that affects all members equally; instead, it disproportionately affects those of us with the greatest need.

You argue that your decision to withhold this benefit is to "protect" students. I have news for you: I, like, many other members, am a student here. This benefit cut is hardly protecting me: it's putting me in danger of serious medical complications if I cannot muster the funds I need to pay for this equipment. You are willing to trade the administrative convenience of some students for the health of others, and pretend that this makes you benevolent. It does not. It shows an astounding level of arrogance and privilege - that of an bureaucrat so detached from the realities of his employees and students that he will treat essential benefits as bargaining chips. Withholding grades and withholding medical benefits are in no sense equal in impact.

One final thought about health insurance. I don't need supplementary health insurance through my work because I have a serious chronic illness (although that is undeniably true). I need this insurance because we live in a system which masquerades as having universal health care, using the spectre of comparison to the U.S. to placate us when essential services are designated as discretionary. Because health care is premised upon capitalism rather than either health or caring. Quality of life, or even life itself, should not go to the highest bidder. It is the role of the university to find solutions to social inequities, not to exacerbate them. Taking away (or even threatening to take away) this meagre safety net is cruel, and shows either a profound lack of understanding of the realities employees face, or a profound lack of humanity. Just because it is legal for you to do this does not mean that it is right.

So, I implore you to go back to the table, and bargain in good faith, without putting these inhumane pressures on the union and its membership. It would be, literally, a relief.

Thursday, September 17, 2015

Tales of a routine medical appointment

I went to the doctor today because I'd hurt my foot, somehow, on Monday. No idea what went wrong, and the worst trauma I could think of is that maybe I stood on it funny. My family doctor wasn't available, so I went to student health, for what I figured would be a routine exam.

It's never that simple when you have a chronic illness that most doctors know little to nothing about.

"A bit of swelling, but no bruising. Hmm, hmm. And you have an autoimmune condition. And you take [looks at my chart and reads off the names of my medications]. Yes. Numbness? Tingling? Nerve pain? So your pain doesn't normally feel like this. Problems with your eyes or bladder? Have you been sleeping ok? Do you have a fever? No? I'll take your temperature. Open your mouth and say Aaaaah. Ok I'll just listen to your heart and lungs. What's your blood work like? Any clear explanation for those numbers? Yes? And you're not worried? Ok, fine, fine. Have you had your rheumatoid factor checked lately? Have you? You have! Ok, ok, ok. Uric acid? Urine test? All fine? Yes? Oh, that's good - maybe it's just broken."

As he's writing a requisition for an x-ray (I did check and fortunately, all he wants to x-ray is my foot), I ask why he insisted on checking my vital signs for something that's so localized to my foot. "You were here," he explains. So I get up to leave, and when I'm halfway out the door, he stops me.

"Blood pressure?"

I am lucky I left without a pregnancy test.