Wednesday, May 17, 2017

They say goldfish have no memory

Grief is a strange beast. Suddenly, Facebook showed me an event, back in Toronto, for queer night at the aquarium. Nel would have loved that. Really and truly loved that. And with no warning, I'm a puddle on the living room floor. Drowning in what-ifs. She's been gone for more than two years now, but sometimes my fingers jump to text her something that would make her smile. What-ifs aren't how historians think, but it's too easy to default, to wonder: what if we could have done something differently? What if she'd found the way to survive? The rational historian brain doesn't help with the sinking sadness that sometimes, even if I can push those doubts aside, I still miss her.

Five years after that spring where so much went wrong, all my fears and feelings are circling around again. It's happened before, and I know what's brought my memories back to this place. I'll leave that part unwritten, because it's not my story. Yet the strength with which the grief and guilt still hurt me - it's a surprise, every time.

Wednesday, April 5, 2017

Medical stuff

I'm not in the frame of mind right now for a coherent essay-style post; bear with me.

I usually go home and cry for a while after certain medical procedures. It's just how I cope with knowing that this is something that is part of my life; that something my body did to itself, for reasons medicine does not understand, means that I need unpleasant and invasive procedures, regularly, just to keep certain bodily functions proceeding as they should. It's unfair, so every few months I let myself have a couple hours to feel sorry for myself (positive living with chronic illness propaganda be damned!).

Today it wasn't just the sadness that some things about my body will never get better. Today I honestly feel like I've been assaulted. A man I didn't know touched my body in ways I'm not comfortable with, without my express consent. Four people were at my appointment: a male nurse, a female nurse, a male resident, and the female specialist. I'm used to the female nurse and the specialist, who are there every time I have this procedure. They know I like a heated blanket, and that I listen to specific choral pieces through the procedure because it helps me keep my breathing on track. They also know I'm a sexual assault survivor and they are sensitive to that. The two men there threw me off guard. I didn't anticipate unfamiliar people in the room in the first place, and still get nervous about this particular thing.

They asked if the male resident was ok, and I said no, and he politely left. I had said I wasn't ok with male practitioners involved in this element of my care. I assumed that was clear enough in referring also to the male nurse. Evidently, it wasn't. But I don't advocate well for myself when I'm in a medical gown and hospital socks. I figured he'd leave at any moment. But he didn't, and suddenly this man I don't know was cleaning my body to prep for the procedure, and I just didn't have the strength to say no. So I put on my choir playlist and tried to pretend it wasn't happening.

But now the pain in my body and how tense all my muscles are because I couldn't relax and the feeling of unwelcome hands makes me feel raped all over again.

Saturday, April 1, 2017

Sexual assault awareness month

Apparently, this month is sexual assault awareness month. Somehow, I was unaware of this occasion for awareness - or at least, I'd forgotten that sexual assault was allocated specifically to April, at least until I saw someone else's Facebook post about it.

Who is this month for? I was as aware of sexual assault at the start of April 2003 as I was at the end of it - being assaulted halfway through that month changed my relationship to sexual assault in an intensely personal way, but growing up as a girl in this world, I'd always been aware. I always will be aware.

If sexual assault awareness is directed at women, that's insensitive at best. Most women are aware of sexual assault when we take the bus home at night. We are aware of sexual assault when we're the last one in the office with a male co-worker we don't know so well. We are aware of sexual assault when we enter public washrooms alone, when we contact a new match on Tinder, and when we take a taxi. We can't afford to be unaware. Non-binary people are quite likely even more aware of sexual assault, depending on their gender presentation.

What is the goal of sexual assault awareness month? If it's so that women know how to protect ourselves - well, we already do. It just doesn't work sometimes, because rape culture is really that pervasive. Sometimes, all the vigilance, looking out for your friends, staying sober, dressing modestly, staying in at night, watching your drink, learning self-defense, etc. etc. etc. etc. ad nauseum, is futile. Rape happens because rapists commit rape, and not because their targets are unaware of this possibility.

Men are aware of sexual assault. Just about every comment thread about rape culture has guys insisting that statistics on the frequency of sexual assault are overblown, or hijacking the conversation to be about how men get raped too (and of course, rape can happen to anyone! just at different frequencies). Awareness is not the issue here. The problem is misogyny that's so deep-seated that far too many men don't give a shit that this happens to women because they too think they're entitled to women's bodies.

Can we have a "consent awareness month" or a "rape culture education month" instead? Something with real initiatives that grant meaningful amounts of money to organizations that empower bystanders to intervene, that teach boys and men that they have a responsibility to seek consent. Something that talks about how microaggressions can create a climate that enables rapists. And we need to do more than just post on social media about it. Individuals, even prominent ones, can only do so much. We need funding to help engage with people who can prevent rape. We need political changes that empower survivors to get counselling.

I find this shows some problems with ambiguously-defined awareness months: what is the goal of a month of "awareness"? We can dress up in all sorts of different colours for all sorts of different causes, but ultimately the problem isn't that we don't know about something. The problem is that the people who have the power to change something don't make it a priority. Grassroots initiatives make us feel like we're doing something, at the risk of enabling further inertia on the parts of governments, major funding agencies, and so forth.

Rant over. It's time to be "aware" of sexual assault for another thirty days, right?

Friday, March 24, 2017

Special needs?

I have mixed feelings about the video about Down Syndrome Awareness that's made rounds lately on social media. In this video, Lauren Potter notes the key needs of people with Down Syndrome - jobs, education, housing, friends, love - and asks the viewer, "are these special needs?" When you frame it that way, no, of course, they aren't - but at the same time, it's important to recognize that some of us have needs that must be met a bit differently. So in a sense, there is a "special" component to those needs.
For instance, it's not special to need housing. All humans do! But I specifically need housing without stairs, and may eventually need other adaptations if my condition changes. Framing this as non-special means I risk having less access to the units that are suitable for me, when accessible or adapted housing units ought to be allocated to people whose disabilities necessitate that sort of infrastructure. Similarly, I need to rest, like every other human. That's not "special" either. But the degree to which I need to rest, and thus have flexibility in my working hours, is special - or at least, it's in excess of what is expected of most people of my age. The rhetoric of "not special needs" is important in breaking down the stigma that excludes many disabled people from opportunities. However, we cannot take things too far: if we flatten out our differences, we risk people assuming that we don't need to have our own needs met in an individualized manner; we obscure the need for additional funding for accessibility initiatives and individualized care.

Wednesday, January 25, 2017


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

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

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