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.

"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.

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.

Progress?

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?

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,
Prednisone.
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.
NOTHING RHYMES WITH MELTDOWN -
Leave me be.
Prednisone, prednisone,
I'll make sure you die alone
I really truly hate you,
Prednisone.

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.

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.

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. 

Silent; invisible

More poetry, about being 14 and losing my vision, in what was likely my first NMO attack. Doctors at the time diagnosed me with conversion disorder, but I think it was the experience of being tested and tested and tested that led me to have dissociative experiences. Were they diagnosing the emotional response that the illness and testing produced? I suppose this is why I always chat with technicians during procedures - it reminds me that all of me is there.

When my world went invisible
the doctors went silent
and I heard whispers between my heartbeats
and searched for songs in mechanized beeping.
And I became silent, invisible
as they glued and unglued
electrodes, sensors
separating my brain from my mind
(assuring me they were "watching my brain, not reading my mind")
in a quest for the invisible, or silent
scars that made me blind.
They said these tests would be painless
but they never assessed
the pain when they still were silent
and my world was still invisible,
and the pain of teaching my fear to be silent, invisible.
And I stayed silent,
made my body invisible, segmented, and still
so they could numb my blind eyes,
restrain my fingers even though they were trained
not to interfere with the needle in my vein.
So I learned to be patient and watch the closed door
and knit cheerfully in the waiting room, intact,
as they pushed pieces of my body into machines
to see more of me
than I could of myself.
Each mistaken medical dictation 
broke their silence, breaking down
each fragment they held custody of
decomposing me
leaving little matter to matter
in an invisible autopsy.

That was an intense one to write. I am still working through a piece about how that period made me feel so crazy, for so long. Sometimes I still feel that I'm "just crazy" and that even the nausea is just a trick. Apparently that fear is so entrenched that, even when I'm totally aware of it, the side effects of a chemotherapy drug can't quite dislodge it.

Welcome back to the city of stairs

It was since moving to Vancouver that my mobility has significantly declined. The city has been variable in terms of accessibility, but even without walking, there are places to go, and ways to get there. There are headaches and many bumps along the way, but even when my mobility was at its worst, this city still felt like mine.

Toronto was once mine, too, as I cruised past stopped traffic along the bike lanes on Davenport, jogged up the Spadina steps, and rode on streetcar after streetcar, escalator after escalator. I could wait too long for a table in any café in the city, and pay too much money for a croissant and americano. I know the subway system like I know the constellations of my own freckles, and I don't remember when I last checked directions before grabbing my bike helmet. Toronto was my oyster - my home.

Returning for a visit with clumsy, spastic legs, I feel like a delinquent teen locked out after curfew. I remember every dissonant chord of the southbound subway entering St. Clair West station, as I drive a borrowed car to St. George, the nearest stop with an elevator. I cut short my afternoon on Roncesvalles after going from one restaurant to the next and realizing that when the banks are closed, there may be nowhere to pee without descending the steep, harsh steps that lead to the basements in Toronto's older neighbourhoods. The car stops behind a streetcar. As a child, I ran for the seats in the very back, to look out the window at the cars behind us on the tracks, as though the streetcar was pulling a small train.

A semi-accessible transit system might as well not be accessible at all, as it forces me to drive, and to see the city from within a small steel and glass bubble. On my bicycle, I could smell them maple trees in the spring; the Portuguese bakeries on Dundas, subtly different from the Italian ones on College. Every station on the Spadina subway line is imprinted with my memories - but the rush of excitement from arriving at Museum is muted when I can no longer get beyond the platform. What used to be home is now a city of stairs.

Vancouver has fewer memories, but with a transit map and a scooter, the city can be mine. Back out west, every ramp and every elevator welcomes me home.