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


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.

Sunday, August 30, 2015

Half-baked policies and unstable platforms: disability and the 2015 Canadian election

March of Dimes Canada has recently released their primer on party platforms on disability issues. This could be useful for people who are still undecided voters - although I am hardly surprised on what each party has put forward in their platforms. I'll offer some commentary on the March of Dimes breakdown, then offer some further commentary rant at length.

The Conservatives offer tax breaks, useful to those who have a home they can renovate for accessibility. A non-refundable income tax credit is no good for those of us who do not own a home, or who lack the cash to pay for the renovation, or whose incomes are too low to pay income tax - a significant concern, since people with disabilities are overall poorer and more underemployed than the average Canadian. The Conservatives also promise funding to help people with disabilities to re-enter the job market, which is all well and good for some people - but woefully inadequate for many, many more. The Conservative promises are nice and shiny for people who already have money, but insulting to the rest of us.

The Liberal platform on this regard is better, but still rather flaccid. An accessible website shouldn't even be newsworthy - that should have happened ten years ago. Honestly, if you're advertising that, it means you're scraping the bottom of the barrel to look good. They're following the Accessibility for Ontarians with Disabilities Act - so basically, complying with the law in one of the ten provinces and three territories that they serve. Home mail delivery is important for many urban and suburban voters, but that's not just a disability item; lots of non-disabled people like their mail at their doorsteps too, and home mail delivery is hardly a big-ticket item in the grand scheme of things. Revolutionary social change, coming soon to a mail slot near you? I think not. Old age security eligibility is similarly just reversing a change that the Conservatives put in, restoring a not wholly adequate status quo. Showing leadership, and collaborating with provinces and territories. OK, this is something - maybe. Superficially. This isn't a measurable goal. How much will wait times be reduced? What will home care look like, when they get involved federally? The Liberal platform, to me, looks like their attempt to Not Be The Conservatives.

Disclaimer: I've always been an NDP voter, not because I'm in love with them but because I prefer them over our other options. So my appraisal of the NDP might be prejudiced - though I am inclined to criticize everybody and am trying to be fair. 
The NDP's "Commitment to Accessibility" looks good. It really, actually does. If this happens in practice and not just on paper, I like it. I'd like more detail on their constitutional provisions, and perhaps that's some research I'll do over the weekend - how specific are their goals? Can we evaluate them, one election cycle from now? As for their platform, it's leaps and bounds ahead of the Liberals or Conservatives, in my opinion. Still, we're seeing little boosts here and there, rather than major, systemic change. Again, what will home care look like, under the NDP? More on that later - home care is a pet peeve of mine, because of its inadequacy. The housing strategy could be big. It could be peanuts, but at least they're offering something that would be good if they managed to implement it successfully. A girl can dream.

The Green Party's platform also looks promising, and I only wish they got more widespread support so we could see their policies in action rather than just in discussion. I would love to see a Canada Disability Act - something with the potential for major, systemic change. Similarly, a national equipment fund, if it's adequately funded of course, would make a difference for a great many people.  And they are the only party to touch dying with dignity as an election issue. So we have two parties offering platforms that could get us somewhere. Maybe. But is any of it enough?

I wholeheartedly believe that even the NDP and Green platforms, which are far more robust than the Liberal and Conservative platforms, offer too little to people with disabilities. I want to see more.

A few policy changes that have to happen:
- If disability means you work only part-time, you may not qualify for EI, even though you pay into it. So then what good are the disability provisions under EI? Or CPP-D? I want to see minimum hours-in-a-year eligibility requirements waived for people whose disabilities prevent them from working enough hours to qualify. This would, for instance, enable someone to work a few hours per week, then take a few months off for a surgery, a relapse, a rough patch, pregnancy, whatever. At the very least, low-income people who would never qualify for EI due to a disability should be exempt from paying into it. It's only fair.
- Presently, people applying for provincial disability assistance first have to apply for regular income assistance (in at least the provinces I'm familiar with), and then wait. And wait. And you have to be skint to qualify. So if you're saving up for a down payment and find yourself disabled, you have to clean out your savings first - and then never save up large amounts of money again, which is super fun if, say, you're saving up for the medical equipment you need because you have a disability. If everything were covered, this wouldn't be as huge an issue - but not everything is covered, and not everything is covered right away. If you live in a different city from your medical specialist and have to fly down for an appointment, that costs a lot of money, and paying up front can be tricky if you haven't been allowed to keep enough money in your bank account to raise funds for a trip. Plus, people with disabilities need to save for a rainy day. Refrigerators and cars break down; relatives die across the country. Savings are a good thing and Canadians are constantly told to save, save, save - yet if you're on government income assistance, savings are banned.
- Home care. That's another thing that's hard to get coverage for. If you can bathe yourself, they think, you can look after yourself. Except if you ask even just a handful of people with disabilities, it'll become abundantly clear that while that's true for some disabled people, it sure isn't for others. Even at my worst, I could always bathe myself. It wasn't dignified, but I was still independent. But cook? Whoever said that bathing was harder than cooking and the necessary housekeeping one needs to do in order to live in a hygienic home either bathes in a fancy circus pose or has a fully automated kitchen and a robot to do everything else. Ability to bathe is a low bar for assessing eligibility. That, and when you become newly disabled and seek services, you wait, and wait, and wait. I put in calls for help at home in October of 2014, and I'm still waiting. I waited for so long that I no longer needed the services. So, most of the parties are talking about home care. What are they offering, and to whom?

We also need a national strategy for paraprofessional care, drugs, and equipment. CBC's The National discussed this last week. Did you know that Canadians pay for-profit drug companies astronomically more than New Zealanders do, for the same drugs? I was blown away. Watch the clip. That's also where half of this rant has come from, for what it's worth - it's just been percolating for the past week.  The panelists talked, among other things, about a national drug strategy. There are so many things that we need covered that aren't covered, or that aren't covered enough. So here's a few:
- Yes, many provinces cover prescription drugs for low-income people. But moving between provinces gets everything all gnarly. For instance, I can get all my regular medications covered when I'm in British Columbia. But if I travel elsewhere, which I have to for my work, I can't get prescriptions covered there. Bringing medications from home works when everything goes as planned, but when you have an illness or disability, that doesn't always work out. This spring I had to buy a medication that cost $80 for a supply that lasted three days, and because I was in Ontario, BC wouldn't cover it. My supplementary health insurance is tied to BC's Pharmacare - so if Pharmacare says no, other insurance says no, too. The same thing happens with paraprofessional coverage: the limited massage and physiotherapy that I can get in BC vanishes as soon as I cross into another province. Plus, not all provinces cover the same medications. Move to another province, and suddenly you're filling out special authority forms for drugs you've always gotten without hassle, or testing out alternative medications when the old ones are more expensive.
- Access to drugs. Canada is still waiting on our Orphan Drug Regulatory Framework to help people access medications for rare diseases. Off-label drugs for rare diseases are also hard to get coverage for. Getting treatment feels like doing a steeplechase. Eventually you give up and start sunning yourself between the jumps, and hope for the best.
- Medical equipment. Super fun stuff. Need leg braces? If you're over 18, BC's Pharmacare program won't cover it. Those can be expensive. Even custom orthotic inserts for shoes are a few hundred dollars. Oh, how about catheters. Let me tell you a fun thing about those: that can cost about a dollar each. Some people need four of them a day. That's $4 a day, just to pee. If you need to self-catheterize and you don't, you're at risk of serious bladder and kidney damage. It's medically necessary. Pharmacare coverage? Nope. BC Pharmacare covers ostomy supplies, so anybody who's had bowel or bladder surgery gets coverage for supplies, but if you don't meet that eligibility criteria, your supplies aren't covered. Because we all know people buy catheters in vast quantities just because people think catheters are cool. Catheters and various continence supplies can be covered by the ministry, if you get disability income assistance, but they insist that you have no other resources - and the definition of "no other resources" is very, very harsh. If you're a student, it's supremely difficult to get this stuff covered. We need a national strategy that will fund everything that is medically necessary.
- Paraprofessional services. If I weren't from a middle-class family that could pay for physiotherapy costs, I doubt I'd be walking now the way that I am. Physiotherapy, massage, speech and language, counselling - and lots more. These are hardly frivolous, but they're also hardly covered. In some provinces, you can wait for eons for a few sessions that are funded. In BC, you can get physiotherapy relatively quickly, but only part of the cost of each session is covered - so, if you don't have a good $100 per week to cover the un-funded portion, tough. You don't get anything. And of course, only the first ten sessions get this partial funding, which isn't enough for people getting treatment for anything severe or chronic. And can we talk about podiatry? If you have certain problems with your hands and need a simple surgery, that's covered. More or less the same thing with your feet would be done by a podiatrist, and they're not covered. Just like medical supply coverage cares about bowels more than bladders, apparently the powers that be really just hate on feet.

It's 1:30 AM, I've just concluded that Canada hates feet, and perhaps it's time to stop ranting for the night.

Thursday, July 9, 2015

"You can watch"

This is at once a story and a rant.

Earlier this week, my sister and I travelled to Squamish, where she planned to rock-climb and I planned to tackle a popular hiking trail. After booking the trip, she told me that the trail that I planned would be too challenging for me, and that I should do something easier. That leaves me with little; the best hikes in the area are somewhat advanced, or involve riding a gondola to them (we'd budgeted for that for the second day of our trip, together, rather than for our solo days), or are really quite similar to what I'd done previously in Vancouver, or simply pale in comparison to what I had done previously in Whistler - and frankly, none of the remaining hikes were the one that I had planned to do when scheduling my summer to accommodate this trip.

There are forest fires nearby. The BC forest fires have worsened air quality dramatically in some areas of the province, Squamish included. The mountains receded into a cloud of particulate matter that infiltrated my lungs, leaving me wheezy, dizzy, and too weak to hike at all. I want to go home; it is too hot; it is too dry; it is too everything. I resigned myself to a day in the air-conditioned library, just to breathe. There is nothing for me here if I can't be with the mountains.

"You can watch me climb," she says, in a text.

You can watch. You can watch. Three simple words, ostensibly stating what I can do, yet an implied proclamation of what I cannot. I can watch others do what I ache to do, and what I can no longer do. I don't know if I'll ever be strong enough to climb again, and have given away my gear; it's easier to make peace with that away from the rock walls. So I cannot climb; I can merely watch, waiting for a turn that won't come.

You can watch. A friend described those words as violence. Yes, violence - it excises intentions of doing, planning, trying, hoping; instead, implants stagnation, life on the sidelines.

"You can watch." It is less an invitation as an evaluation of what is worth watching - of whom we bother to watch; when we watch; why we watch. Unintentional, but only because what we watch is coded into how we view people and their activities. Why watch writhing, weeping, wilting, waking, worrying, wanting? Disability is invisible, except when it is hyper-visible.

This summer, my mother has started snapping candid iPhone photos of me doing perfectly ordinary physical things that were easy before I got sick, impossible a few months ago, and are still now somewhat challenging. With a disability, people watch because it is exceptional that this person is doing a particular thing. When someone does not have a disability, people watch because the activity is exceptional, or it is performed with exceptional skill in relation to humanity in general. Speed. Artistry. Finesse. Who applauds a non-disabled woman who swims, slowly? walks with trepidation down a log? makes a simple salad? We applaud the ordinary when it is performed by children. When we watch, when we suggest watching, we judge. I love children, but don't want to be judged, again, as a child.

Thursday, June 25, 2015

Disability, invisibility

I've spent the past two days at an academic conference (it's been excellent, thanks for asking; probably among the best I've been to). I also went to two conferences earlier in June. An odd thing has happened, on more than one occasion, at both of these events: running into people whom I'd met at a previous conference in November, while I was having significant mobility challenges and using my scooter, and finding that they had no idea who I was. Now, I'm the last person to criticize people for not recognizing others, ordinarily; I've had embarrassing incidents where I don't recognize people I know reasonably well: my (lifelong) dentist, friends, the person I was dating, my thesis supervisor. But this, I feel, was different, and speaks to something that seems to happen with disability, particularly when mobility aids are involved: suddenly, you become a wheelchair, walker, or scooter, rather than a whole human being.

The incident today can illustrate all three moments when people didn't recognize me, though perhaps it was the most extreme. I ran into someone who was on my panel at the November conference. [Since nobody reading this was actually at my panel, here's some context. There were just three of us on the panel, plus a moderator, and two audience members. It was a small room, so involved lots of discussion amongst five of the six of us who were present (the sixth texted for the entire time - but that's another story for another day!). Three relatively interlinked papers, a half-hour question period where presenters got to ask questions of one another (this doesn't happen often, but was perhaps a bonus of having such a pithy audience). So needless to say, remembering who the other people are should be a given, even if the name or face is initially a hold-up.]. I say hello to her, and get a blank look; remind her who I was (hi, I'm [my name], from [university]; we presented together at [conference] last fall). She looks perplexed; asks if I'm mixing her up with someone else. No, I'm certain that I'm not. So I tell her about the panel - its egregiously early timing for a Saturday, small group, how we all came together with cohesive papers despite having never communicated until that day. Then she seems to recall who I am: "oh! were you the one with the scooter?"

The one with the scooter. This might sound like a neutral statement, but to me it is anything but. I could have been the one who talked about whatever aspect of my paper she may have found memorable; the one who asked her a range of questions about her paper; heck, even the one whose own mother, awkwardly, happened to be our only vocal audience member, and who rather took her to task during question period. Instead, I was the one with the scooter. Not an academic, a presenter, a colleague, or even a woman, a person. Just "the one."

When I used my scooter, people recognized me, from day to day, on the bus. Except, they didn't - they recognized my mobility aid, and the vague shape of the person it carried. You can't blend into the woodwork when you beep each time you reverse, take up time and space any time you go, well, anywhere. To people I met briefly, I was the scooter, and the scooter was me. I was paradoxically both hyper-visible, and invisible.

I admittedly don't know where I am going with this thought, but it is something troubling that I need to remember to think about further.

Monday, April 13, 2015


Facebook has a function that brings up posts from a year ago - or two, or three, or more years ago - perhaps for the little historian in each of us. For me, that one year ago is a hard thing to look back on. I just filled out a progress report for school detailing my activities over the past year, and it's the tip of the iceberg. I can't tell my funding agency what I've really been up to.

Last year on April 13th, I went on a run - 10 km in an hour and 15 minutes. A few hours later, I posted on Facebook that typing for so long while doing my comprehensive exams was hurting my back (I thought it was fatigue, from so many long days on a terrible desk chair). On April 14th, my right leg stiffened up and started to shake uncontrollably (I thought it was anxiety, as the first of three exam deadlines approached that afternoon). On April 15th, I was in enough pain that it was hard to turn my neck or torso, or lift my arms. On April 16th, I tried to go swimming, but couldn't. On April 17th, I went to the doctor, who referred me to a neurologist. Over the week that followed, I lost feeling in the right side of my body. On April 23rd, I passed my oral exams, doped up on narcotics from the pain, hoping my committee wouldn't offer to shake my hand, since I couldn't move my right one. By early May, I'd regained feeling, but my gait was unsteady, and I was still stiff, tired, and in pain. I went to conferences and spent time in the archives, doing my best to not let people see how I felt. In June, my pain kept marching on, but my legs didn't. On June 19th, they said I probably had MS, and gave me five days of steroids. I cried for the rest of the month whenever I was alone, and tried to convince other people that I could handle this. Through early July, I gained my strength back, running a few steps for a bus, walking without a cane, and thinking that I'd seen the worst of it. At the end of the month, I relapsed again, losing some vision in my right eye and becoming unsteady, once again, on my feet. More steroids. The paranoia from steroids was so bad that I vowed never to do that again. In early August, I went hiking again, dragging myself through a valley with a pair of hiking poles and the sort of stupid perseverance that can only come from a steroid high. Then I did the MS bike tour, raising $2500, winning a coffee maker that I donated to the steroid clinic, and exhausting myself thoroughly. Two days later, I relapsed again - couldn't pee, my pain skyrocketed, and my left hand felt weak. I refused steroids, thinking it would get better over time. I got a brace for my clumsy right leg, and started on medication for neuropathic pain. I started to pee again, a few days later, but couldn't control it properly. I bought incontinence pads, and cried. In September I went for an MRI, relapsed the next day, with my walking getting less and less steady. More steroids. More pain. More medication. More paranoia. My mood plummeted. I attended a friend's party on so much medication that I could hardly stand up straight, and went to meetings that I can't remember, and for which my notes are illegible. I started writing my thesis proposal when I had spurts of energy. I joined a new choir. Then they said it was probably not MS, but NMO, which was even worse. I thought I was going to die; on bad days, sometimes I still do. They prescribed steroids and immunosuppressants. I felt lucky that I could still walk. In October, I relapsed again. My eyes hurt, and everything tingled. They gave me even more steroids than before. Every day my legs became weaker, until I bought a walker just so I could get to the bus. Then I couldn't swing my legs into the bathtub to sit on my shower stool. My muscles spasmed and released, spasmed and released, and I couldn't take the pain. I went to the ER, alone, for one of the lowest nights I have ever had. I have friends who would probably have come, but I didn't feel worth calling them. Doctors sent me home, giving me nothing for pain. My pain control was cats. My physiotherapist suggested I get a wheelchair. I couldn't push myself in a wheelchair, so rented a scooter. For days, I was ashamed to ride in it, because I didn't feel like my weakness and pain were real enough for me to need it. A new pain medication helped with the spasms. I was incontinent, and sometimes it was obvious. My friends have tact, and stayed silent. I slept more than I stayed awake, but at odd hours, and fitfully. I broke down in front of a friend, convinced I'd never survive much past the end of my PhD unless the relapses stopped; she couldn't reassure me that I'd live, and we talked about how a thesis could be a legacy. I gained 10% of my body weight. I broke down, every day, and laughed giddily, over nothing, on the same days. I kept going to tai chi class, unable to lift my feet off the floor. One scooter broke; the next got a flat tire. I presented at a conference, learning how inaccessible my hometown was. I tried to persuade my family that I was fine. I wanted to die, and wanted to live, both so badly, at the same time. The MS clinic physiotherapist said that walking wasn't a realistic goal. All the best disability politics can't help with that sort of life change. I told people I was fine so much that many of them stopped asking. One friend stopped seeing me, and I still don't know quite why. I started weaning off prednisone, bringing joint pain and nausea and fatigue that squashed my mood. Back to the ER, for nausea, but they gave me a psych consultation then did nothing. I returned the scooter, since it was too expensive. Got a new physiotherapist, who said it was worth working on walking, rather than renting a scooter. Physiotherapy was so hard, and so painful, and so discouraging. For Christmas break, my family pushed me about in a wheelchair on holiday, so I'd have a chance to see anything. They went on a walk across a footbridge, and left me behind, because I was so slow. I wanted nothing more than to run along that bridge - and jump off it. A few days later, a friend killed herself, and I promised myself that I wouldn't. So I worked on my thesis proposal, word by word, page by page. I did physiotherapy exercises until everything hurt and I collapsed, day after day. My social worker suggested accessible housing - a kick in the shins, when I was finally becoming more mobile. I went back to the swimming pool, where the old ladies saw my walker and told me about their bad knees. I gave another conference paper. I wet the bed. I lost some of the weight I'd gained, more from nausea than any sort of diet or exercise plan. I made hundreds of paper cranes. I stopped using my walker. My eyes still hurt too much to read. I went on a prednisone-fueled hike, slowly, slowly, and got stuck on a trail after dark. I broke down, day after day. I defended my thesis proposal, sick as a dog, and cried for two weeks afterwards - despite passing. I walked more, each day. I stopped needing the cane for short walks. I started weaning off pain meds, preferring pain over side effects. I psyched myself up for a urology test to get to the bottom of my incontinence. I started taking medications to help my bladder. I started running again. I started to read again, and to work almost normal days. I got back on my bike. My pain is still here. I've mourned my mobility, my hobbies, my friends, my career, my freedom, my independence. I'm still here.

How was your year?

Wednesday, February 11, 2015

Prednisone, in poetry/bastardized song lyrics

When I find myself in times of trouble
And drag my ass to Dr. T
His prescription pad is ready
To tell me:
A higher dose of prednisone
Should help maintain stability.
Like a cat in a cone,
So gloomily,
I count the bitter pills to swallow
(The plastic bottle stares at me).
The side effects will follow,
Eating me. 

Prednisone, prednisone,
How you make me gripe and groan
I don't want to date you,
Gastronomic misadventures.
Insomnia. Anxiety.
If one day I need dentures...
Oh, bite me.
My mind is in a nuclear meltdown
My pants won't fit an inch of me.
Leave me be.
Prednisone, prednisone,
I'll make sure you die alone
I really truly hate you,

Wednesday, January 21, 2015

Funding a PhD with a disability: it doesn't add up

In progress and subject to editing.
For those unfamiliar with the abbreviations, a brief key:
CGS - Canada Graduate Scholarship, a fairly generous doctoral award 
SSHRC - Social Sciences and Humanities Research Council, the body that allocates funding such as the CGS
OSAP - Ontario Student Assistance Program (migrating from place to place means my loan eligibility is still in Ontario
CPP-D - Canada Pension Plan for people with disabilities, essentially giving you your pension early
EI - employment insurance

I've done all the right things, but my disability has left me in a financial pickle. I am not eligible for any student loan funding, because I hold a doctoral CGS. On the surface, this seems reasonable, because my funding exceeds the cost of tuition and living expenses. However, this is a challenge, because I have a physical disability. OSAP ineligibility makes me also ineligible for government funding for students with disabilities that would provide me with the equipment (for example, an ergonomic workstation) that I need for my education. While my peers in receipt of the same scholarship can use their SSHRC funding for tuition, living, and research expenses, I must also use it to pay for mobility aids, massage and physiotherapy. These are not fully covered by my insurance.

There is a critical flaw in how disability funding eligibility is calculated. These disability grants provide significant amounts of money: $2000 annually for any eligible student, not tied to particular expenses, plus up to $8000 annually to cover disability-related educational expenses). One applies through a provincial student loan program (in my case, OSAP). Student loan eligibility is calculated based on income and tuition - it does NOT take into account other expenditures, such as disability-related costs, that aren't part of a usual frugal student budget. If I were eligible for $1 of OSAP, I would get $2000, plus funds for up to $8000 in products and services (students use this for specialized software, equipment, tutoring, note-taking, etc). Even without drawing from the second fund, one dollar of eligibility would add $1999 to my income, whether or not my disability were one that resulted in additional expenses. My disability-related expenses easily exceed $2000 this year, and I cannot predict what they'll be in the future. If disability expenses were included in the algorithm for OSAP eligibility, I'm fairly sure I would be eligible for funding. I'd reckon a great many students are ineligible for these programs because they are in financial need because of a disability, but would not be in financial need without a disability.

Some of my expenses sound like luxuries, but with a disability, they are not. For instance, sometimes take-out is the only way I can get dinner, if I am too sick to cook; taxis fill in the gaps if I am in too much pain to take transit and need to get somewhere - such as the hospital - at short notice, and a house-cleaner is necessary as I am only now, after three months, becoming strong enough to lift my vacuum out of the closet. My additional disability-related expenses mean that, were it not for a middle-class family that chips in for medical expenses, I would come short on my rent payments. It is not fair that, when someone has a disability, the burden is placed on their family in this way.

When it is time for me to travel to Ontario for research in the archives, if I am not able to walk and climb stairs reliably by that point, I will likely have to spend more for accessible accommodation, and pay to take taxis where the local public transit system is inaccessible. Since the travel funding provided by my department does not cover the full cost of travel, and since I am using all of my SSHRC income for day-to-day living and health expenses while in Vancouver, I anticipate having to take out a line of credit (at a higher cost than a student loan) to conduct the research necessary for my PhD.

Being a student puts someone in a weird middle ground when in terms of government benefits. I have had to stop teaching this year, for health reasons, but I am ineligible for EI or CPP-D (despite paying into both with my teaching income) because two semesters as a teaching assistant is slightly less than the minimum threshold for eligibility for these programs. The many hours of work that I do as a student is not counted as work in this context - so even though graduate students who are also teaching assistants work for at least 40 hours weekly, for the purposes of EI (in)eligibility, it is as though we only work for 10. Notably, SSHRC stipulates that award-holders should limit work to 450 hours per year, but the minimum hours for EI eligibility far exceeds this in most provinces. This also leaves us in the lurch if we graduate and have a short dry spell before finding a job in our field, or need parental leave. If I were given the chance to pay into EI from my scholarship income, and thus be eligible for disability or maternity leave, I'd jump for it.

To further complicate matters, I made a decision upon first receiving my SSHRC funding that I thought to be financially prudent: for my first two years of funding, I put a significant percentage of my income into GICs, knowing that my funding would run out before the end of my PhD studies. I've laid out my GICs so that I would get payments each semester, effectively spacing out three years of funding over five years. At present, I could break some of these investments early. There is a financial penalty, but that's not my main concern - instead, I worry that by withdrawing this money early, that I would be using up funds that will be critical to me finishing my degree when my funding runs out. My disability is slowing down my degree progression already, due to physical challenges such as pain and fatigue, and logistical ones such as time traveling to and attending multiple medical appointments each week. I am concerned that in the later years of my program, when I should be working full-time on my thesis, that I will have to teach to earn income that I would not need were I a SSHRC recipient without a disability.

This all seems like a rant of a very privileged person. Indeed, I'm in an enviable situation in terms of the funding I have received, and I know that many people - with and without disabilities - make do with far less. For what it's worth, I believe that all graduate students should be guaranteed a support package that will enable them to finish their degrees in a timely fashion, while living like (frugal) adults. But there is nothing enviable about the health situation I found myself in during the past few months, and the financial consequences that I've encountered. Students with disabilities are at the nexus of a medical system that doesn't sufficiently cover auxiliary services such as massage, physiotherapy, and podiatry; a student aid program that puts many of us at a disadvantage to our peers; and broader social policies (such as surrounding EI and provincial disability support programs) that severely limit eligibility.

Thursday, January 8, 2015

Before taking her life, Nel asked if I had pierced ears. I don't know how she didn't know that I do. We spent so many nights with our ears on one anothers hearts. I'll never know why she wanted to know, when the end was so near.
It haunted her play characters that someone could die, without their loved ones knowing what their favourite flower was. It's odd that I never asked - Nel, what is your favourite flower?

It is odd how intimacy is like a range of undersea mountains - you know some parts of a person with so much depth, and other parts with so little.

Wednesday, January 7, 2015

Satan's tic tacs

I'm withdrawing from steroids. This makes me miserable - sensitive both emotionally and physically, and in continuous pain. But that's not really what I'm writing about today (though the title of this post is playfully referring to what one NMO mom calls the steroid pills her son takes).

The NMO Facebook group that's been an important source of support for me is very religious. I doubt that most people in the group are particularly evangelical, but there is a critical mass that affects the overall character of the group. I am not the only secular person who's mentioned feeling alienated as the group more and more closely resembled a prayer circle around the holidays, and particularly when a couple of members were critically ill or had passed away. 

Prayer was a sticking point. As I've written about before, I emphatically do not like when people pray for me. After one thread when people talked about Satan when a member posted about losing her faith, and another when a new member said she felt alienated in the religious environment, and another when I asked for support and received prayers and even a recommendation of videos of evangelical preachers, I suggested a compromise to the group that I thought was really reasonable. Pray for people who ask for prayers - don't for people who do not (and a similar principle could be exercised for cat photos, hugs, whatever). The responses I got were upsetting - disturbing, even. 

There seems to be a chasm between the mindset of religious people and my own mindset. A few of them said that offering prayers was the only way they knew of to comfort someone. That really doesn't sit right with me - how did prayer and compassion become so synonymous? What about listening to one another; telling stories; sharing songs, poems, photographs? Of course, to them, it is just as unfathomable that I find prayer upsetting. The disturbing part, though, was how snarky people became. I ended up in hysterics (on top of the pain I was already in) and terrified I was about to lose one of the only places where people really understood NMO.  One moderator insisted that I was suggesting censorship, and then declared that the thread was closed to further posts. As my temperature rose (literally - I was quite feverish) I definitely posted some incoherently upset comments. I'm not proud of myself for staying on the internet rather than looking after myself, but once I'm in a comment war, I stay until the bitter (and this really was bitter) end. 

It was a nasty evening. Now, it is as though it had never happened - mostly. I don't feel safe posting in that group when I'm really struggling, and I'm sure there are other members walking on eggshells around me. It's not a safe and supportive place for me anymore. It all leaves me trying to sort, iron, and fold my thoughts about religion and compassion, but it's hard to find the mental space to do that when all I can really do is cry.