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.