A day in my dis/abled scholarly life

Summer term has started, and my workload now includes an 8am mentored teaching opportunity (aka I’m TAing for free because I need/want more teaching experience) on top of finishing my surgery-related incompletes, my freelance paper editing, and my 20 hour a week job.  Oh, and dancing when I can.

Dancing has been especially problematic because of my body deciding to be more abled on one day or less abled on another.  Even more fun is that sometimes this changes from hour to hour.  Yesterday was a pretty good pain/mobility day, Saturday I was able to only do one of my two performances (although due to eye pain + almost migraine-type headache), and today I went from “ow, I’m having trouble sitting still” while shadowing my adviser’s undergrad Soc of Sport & Exercise class to “crap, I can hardly walk” after almost falling off a couch in the student union.

Even when my body isn’t being quite as two-faced (dichotomous? bifurcated?), I still have to contend with the impact that (for instance) a walk from my car to the campus library will have on my ability to even get up the stairs into my house.  Every little thing I do has an impact on my day (think Spoon Theory).  Add to this my love of dance, and I’m stuck with a quandary that wraps itself around ableism, including internalized ableism.

I’ll use today as an example.  I didn’t get enough sleep last night because of muscle spasms, so I wasn’t running on all cylinders to start (I overdid it yesterday because it was a lower pain day).  I had to be up at 6:30am so I could be in the classroom by 7:45 at the latest for the 8am class.  I make coffee, hook up my TENS unit, grab my travel cup, wallet, keys, & breakfast and head out a little early.  Since I’m getting around without too many problems and its a short distance, I use my forearm crutch to walk from my car to the building across the street.  I’m going to be on campus until at least 5pm, but I have a break between class, a meeting, and my paid work.  In class, I sit on a rolling chair and scoot myself around with my legs unless I need/want to stand (usually to use the technology podium thing…picture below.  The grey podium is at “standing” height with a grey table & chair visible behind it. There’s a chair in the forefront that is actually backed against the wall, so there’s not much space between the podium and the wall).

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During class, I’m mostly just watching my adviser give a lecture with discussion and video clips peppered in between for an hour and a quarter, with a guest presenter for the last 3/4 of an hour.  Because of the format, I really can’t stand up if/when I want to without completely breaking classroom norms (if it was my own class, sure….but not for this).  The chairs suck, so my spine gets angry.  Not too angry, but enough that I know I need to be careful.  Oh, and my TENS unit battery dies in the first half hour of class.  Whee.  After class, I meet with my adviser and our guest speaker for an hour in the classroom.  We were going to meet in her office (which is about 4 blocks away from both the classroom and my paid work office), but none of the students wanted to use office hours.  Hooray!

The speaker and I are friends as well as colleagues, so we walk together to the student union (about a block away).  I’m headed there to buy batteries in the campus convenience store then to lay down for a while on a couch and read, and her office is somewhat on the way.  We get to where we should split off, but start talking about sport and bodies and disabilities (she’s half deaf and I’m half blind, on top of my mobility stuff) and how spaces impact/privilege certain bodies (the sociospatial)….we talk for so long that she’s late for her meeting (sorry!!)

So now it’s noon and I have to be at my administrative office at 1pm.  The student union is about a block away from my office building (the classroom, the student union, and my work office form a triangle, with my car parked in the admin parking lot).  It’s not much time, but laying down will definitely be part of whether or not I can go to a dance class at 8:30pm.  So I putz on my phone while laying on one of the couches, but when I try to get up my spine decides to act like a petulant child….but at least I don’t completely fall off the couch like I did last week.  

Eventually I get upright enough to try walking, but it’s slow and painful and wobbly.  I get to the c-store for batteries (and food as I now no longer have time/energy to get to my car for my packed lunch).  While wobbling, I drop my ceramic travel coffee cup (thankfully empty).  It shatters, inches away from my flip-flop wearing feet.  Awesome.  Now I get to be the klutzy cripple to the poor clerk that has to come and sweep it up.  She gives me the “poor unfortunate soul” face, rings me up (almost $6 for 4 batteries, good grief).

I waddle to the admin building, to the elevator, to my office for four hours.  It’s not too busy, which is a blessing and a curse.  The blessing is that I can work on schoolwork or class prep (what really happened is that I wandered around various blogs like Feminist Sonar between answering the phone and handling paperwork).  The curse is that I was mostly desk-bound without much reason to stand or move through the office, which can exacerbate my cranky spine.

The office closed at 5pm, but they let me stay late to do schoolwork if I want.  So it’s almost 6pm and I’m wrapping up this post so I can go to the food co-op for a couple things, then home to lay down, all with the hopes of being able to head to the dance studio at 8pm.  With enough prescription pain meds, maybe I could tell my friend that teaches that I would definitely be there.

My days are usually built around trying to get through my day, which probably sounds odd to abled people.  The reality is that I try to do whatever I can to be able to dance (or be social or read or play games…you know, enjoyment), but sometimes I fail.  A lot of it comes down to ableism though.  If I look through my day so far, I can see where using different mobility aids would have given me more of a chance to dance.  Using my manual wheelchair would have given me a better place to sit during class (even though it isn’t a great fit and I really need a proper back support).  However, I wouldn’t have been able to use the podium to set things up for class from that vantage point, so I would have had to put myself in the very visible position of “wheeler that can walk”…which goes against damn near everything people believe about wheelchair use (walking is privileged, even when walking will damage a body).  

Honestly?  One of the main reasons why I don’t use it, even when I should, even when it probably would have allowed me to dance tonight….is because people just don’t understand.  They don’t understand how a bit of walking early in my day (because one to four blocks at a time is only a little to the average person), even if I’m moving around ok, could impact me later in the day.  The assumption is that there is a hierarchy of adaptive aids that people use depending on how bad their mobility is.

It starts with no aids, then cane, crutch(es), rollator, walker, manual wheelchair, electric wheelchair (scooters have their own image issues, especially for fat people with mobility problems).  The assumption is that a person only goes to the next level when their current level of mobility impairment requires it.  For the average person, it doesn’t make sense to use a higher level of aid for what could be or what might be.  We live in the here and now in this society, instant feedback….but many times bodies don’t work like this.  

Using a higher level aid elicits a response from people in your social circles (unless they know better).  “Oh, you must be having a bad day!” “Did you hurt yourself worse?” There’s an assumed permanence, completely ignoring those pesky times where weather might make me feel better or worse (for example).  There’s assumed fault and blame on top of that, where my choice to either save energy or my upright-ability so I can dance is considered a bad trade-off or that I’m faking my need for a certain mobility device (because it’s totally fun to have a full trunk of mobility equipment in my car, none of which my insurance would help pay for…or because I love being stared at as I try to navigate overly steep ramps in the back of academic buildings like I’m a criminal).

All of those reactions, all of those microaggressions (whether they be structural things like the podium in my classroom or social like the constant questioning) add up….all because I tried to be more able in a more fun (and chosen) manner.  Those messages get internalized, making me feel bad that my disability experience isn’t can/can’t black & white.

This post rambles on a bit, but I wanted to show people (hopefully in a somewhat concrete way) that being disabled can seep into the corners of one’s existence.  It becomes a balancing game between your self, your social spheres, and the physical environment.  Some times I can decide to ignore the people that think I’m crutching/wheeling for attention just because they see me dance without aids….some times I fall victim to the crap in the world that tells me what ticky box my body should live in and what that looks like and moves like and identifies as.

Today I let the crap beat me down and I tried to look/act/be more able…..and now I’m going to go home knowing that I can’t go to dance class tonight….and it sucks.

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It’s OK, I’ll just cross at the other end of the block!

I’ve had this happen….scraped the hell out of my knuckles two years ago in Indianapolis who blocked a curb cut at a stoplight. My choices were 1) scrape knuckles or 2) try to use the other curb cut on that corner and risk getting hit by oncoming traffic trying to get to my hotel. Ugh.

universal.f.you

20140512-080258.jpg I mean, to be fair, it IS technically a parking space. Because putting the curb cut on a parking space makes total sense, #amirite?

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Adventures in hair dying

Adventures in hair dying

When my pain level gets high (like it almost always does at the end of the semester, no matter what I do or don’t do), I itch to change my appearance. This time it involved bleaching my bangs and dying the rest a medium red (a la Rogue from Marvel’s X-Men). Sometimes I end up blowing more spoons on these adventures in femme-hood, but I try to compensate with awesome smelling body wash or soap (like the awesome sample of Herbal Essence’s new body wash that I got from Crowdtap).

So, here’s a selfie of stage 1 of the process immediately post-shower!

Photo description: a selfie with a slightly top-down angle showing a pink-cheeked white woman with wet hair. The long blonde bangs fall forward, with the rest of the hair on the right side pulled back to show a shaved undercut.

The Wall

I’m posting this because I hit the wall last night, but can’t manage to put into words what that feels like. Thankfully, this post does it better than I could right now!

Then Everything Changed

To people who suffer chronic pain “The Wall” is just as real as the Great Wall of China and sometimes just as daunting.  Those who suffer chronic pain work very hard to live a normal life, they are experts at setting aside their pain, ignoring it, or distracting themselves, in order to get on with their daily lives.  The problem with that is sometimes we are just too good at what we do and out of nowhere the pain that you were ignoring at about a four suddenly becomes an eight.  What happened?  You hit a wall.  We call it that because that is exactly what it feels like, one minute you have everything under control and the next you have surpassed the amount of pain you can handle and unwittingly wandered right into a pain storm.  At that point everything stops, you are at a pain level that you…

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OOTD: Workin’ It

OOTD: Workin' It

Photo description: A beige wall behind the pale white woman smirking in the foreground (me) from the chest up. My reddish hair is wet and parted to the side, touching my shoulders. I’m wearing green plastic rimmed glasses, a delicate necklace with a green stone, My dress is floral with pink blooms & green leaves and has a deep v-neck that shows my kanji tattoo (that hopefully says “believe”). A black cardigan is over my shoulders.

Because of a difficult combination of pain, a book review deadline, and the neighbor kids being rowdy until past 2am, I’m exhausted. Although I really felt like I couldn’t spare the spoons, I managed to get a quick shower before work but there was no way I was going to get it dry in time (I don’t own a blow dryer as I hate blow drying my hair. It makes my hair feel damaged, it poufs it up strangely when I attempt it, and it’s just a waste of time/energy that could be used elsewhere). Although I wasn’t feeling stellar, I had another one of my days where I really wanted to both be comfy and look cute at work. This dress (purchased at a random vendor on my family’s vacation) is really comfy, although the neckline dips so low that I’m uncomfortable (I rarely show cleavage, no matter where I’m going or what I’m doing), but this dress is stretchy and colorful and is just long enough to hide the capri leggings I always wear to avoid chub rub. The cardigan is from Lane Bryant from a few years ago (with all my tattoos, I try to keep the big ones mostly covered).

I’m posting this because I read a post from Fat Heffalump about ugliness in relation to fatness, and it reminded me of how I tend to dress more femininely when I’m having a bad body day (whether that’s pain, dealing with body image issues from fatphobic doctors, etc). I also tend to post Outfits Of The Day (OOTDs) on these days. While I think my initial motivation was to appear less ugly by taking the gaze from my pain-grimace or my limp, I now find myself reclaiming both my appearance AND my gimpiness (or as Caitlin Wood said in the new anthology Criptiques, flaunting my difference through “crip bravado”).

That being said, there is tension between “I’m hiding my physical pain by trying to look cute” and “I know that I’m objectified as a fat disabled woman, but I’m taking your gaze and spinning it for my own uses.” There’s also tension because of my fight to keep belly dancing, even though I have a limited amount of time in a day where I can be on my feet. It’s that in-between place where my disabledness is (sometimes) not readily apparent.

I think my next OOTD will be one of my “standard uniform” days….jeans or a comfy skirt + leggings combo with a t-shirt + cardigan combo or a long sleeved top. My usual style leans a lot more to casual semi-androgynous, and it never crosses my mind to take a picture of usual-me.