I’ve been in a bit of a blogging slump because of health issues, but I want to pass along some Paralympics coverage and commentary (partially because I just lectured to undergrad kinesiology majors about disability sport and physical activity, and partially because I did this for the London 2012 games when this was a baby blog)! I realize this is overdue as they’re over, but it’s something….
I was listening to a podcast interview with Julie Flygare, a person with narcolepsy who blogs at REM Runner, wrote a memoir called Wide Awake & Dreaming: A Memoir of Narcolepsy, and runs a nonprofit called Project Sleep. I think she’s pretty neat (and she’s really one of the biggest narcolepsy activists/advocates), but I was struck by something she said that raised my hackles…something that I hear often in spaces for sick and disabled folks. The gist is this:
I thought I was going crazy, but I found out that I have [xyz illness/disorder/syndrome/impairment]!
I hear a similar thing when talking with folks with physical disabilities like paralysis:
Just because I use a wheelchair doesn’t mean I’m dumb/mentally impaired/cognitively disabled/an idiot (insert other ableist terms…many times the R word)
Think about this for a second. I understand the intent behind the first paraphrase, especially as a woman. Many times women who try to address a health concern with a doctor are told that it’s “all in their head,” they’re “hysterical,” and the symptom(s) aren’t real. This happens a lot with fibromyalgia and chronic fatigue syndrome (also called myalgic encephalomyelitis). People want to be believed, especially by their doctors. It makes sense. We want our realities to be recognized and validated, especially when it feels like our bodies are attacking us out of the blue.
The problem, however, is that these words end up making mental health concerns to be “not real” and that is totally problematic. For instance, ask anyone who has panic attacks if what they’re going through is real. This notion of what is real and what isn’t is really sticky. A person who is having a panic attack is having a real reaction to a stimulus, whether internally (maybe life has been stressful & they thought about something that’s causing them great anxiety) or external (maybe it’s related to a phobia and it’s hard for someone else to recognize the trigger). For folks with more stigmatized psychiatric symptoms like hallucinations, delusions, mania, suicidal ideation, all this discourse does is create more stigma (and further hurt a person’s overall health as stigma is related to a slew of negative biomarkers like high blood pressure, high blood glucose, inflammatory markers, etc).
This “crazy talk” needs to stop in other places too (Fit is a Feminist Issue just did a blog post about athletic events or pursuits being called crazy, and there are a bunch of mental health advocates & psychiatric survivors trying to get people to stop calling things like the weather “schizophrenic” and “bipolar”). People’s lived experiences, diagnoses, and identities shouldn’t be used as metaphors for crappy things!
*This post is delayed because my computer & WordPress haven’t been cooperating…I have a couple photos of my scooter on the Amtrak train, but I can’t manage to get them to post. I apologize in advance!
I got back on a Monday from the amazing Society for Disability Studies annual conference that was held in Atlanta, Georgia, USA from June 10-14 (I’m going to blog about that separately). The last time I was there was in 2011 for the National Women’s Studies Association conference, but I drove to the conference instead of flying or taking the train (I was also a cane user at that point). While that was a lovely six hour drive to Georgia, it was a really frustrating 10 hours back because of a huge traffic jam. Since my pain issues are much worse than in 2011, I knew that driving would mean I have to take at least hourly breaks and that was something I really didn’t want to deal with (plus the price of parking at the conference hotel ate the money I saved from driving).
I was a little nervous taking this trek. It was my second trip on Amtrak and my first alone. I also didn’t designate myself as disabled on the ticket because I was afraid that I wouldn’t get an actual seat to sit in for the trip (the thought of spending 8 hours sitting on my TravelScoot was really unpleasant). The Amtrak employees at my local station were great. They directed me to the elevator to get to the tracks, then asked me if I wanted to use the ramp or go up the stairs. Since I wasn’t sure what the ramp looked like in action, I opted to use the stairs and have them lift my TravelScoot up and over the stairs (they were amazed at how light my scooter is!). They pushed it to a disabled section and I got to sit with my beloved scoot in front of me with an empty seat next to me! I was really thankful because the train seats are probably one step above metal folding chairs in comfort for me. I was able to find new and unique ways to drape myself over seats & scooter throughout the trip (although I never managed what could be construed as “good sleep”).
I started my journey at about 1am and arrived in Atlanta shortly before 9am. The ATL Amtrak station is a lot smaller than my local one, which was a huge shock. I got myself through the people and was ecstatic when I found the restroom (the bathroom on the train was right by my seat and reeked of urine). Much like in an airport, I had to wait for a presumably non-disabled person to get out of the accessible stall (I honestly don’t blame people for wanting enough space for their body & their luggage in the stall, but that’s a design issue)….however, I had a young woman almost shove me over as I headed toward the accessible stall when it opened! Thankfully she realized what happened, asked if I was waiting for the stall (“yes”…with a barely hidden eyeroll thanks to exhaustion), then let me go use it.
The trip back started out way too eventfully for my tastes. I spent Sunday hanging out with awesome friends I had either met from previous conferences (like Bethany from Crip Confessions) or from Facebook. It was glorious on so many levels, but more mechanically it meant that I got a ride to the train station so I didn’t have to mess with public transit. One of my friends was taking the same train (but to NYC), so it was pretty convenient….but we were running late. We were trying to find what my friend called a “Red Cap,” which is one of the disability services type employee (I think in NYC they actually wear red hats to be visible to folks that need boarding assistance…I didn’t see any at my home station, so it could be a large station thing).
Every employee we found seemed confused by the “red cap” question, which really didn’t help the sense of panic we both had about being potentially late for our train. My friend would then essentially ask for a disability liaison (I can’t remember her exact phrasing), which would get the employee to look at her ticket & nod, but look at my ticket and chastise me for not having my ticket labeled as disabled. At least four different employees made comment about it in a way that made me freak out that they weren’t going to let me board the train because my ticket didn’t have the designation. In the midst of it all, I got separated from my suitcase, which made me panic even more (the porter took it and my NYC friend kept an eye on it). Eventually I did get to board the train with my scooter and with text messages & periodically asking the Amtrak employees to keep an eye out for my suitcase, I was reunited with the rest of my belongings. I feel lucky that I didn’t hit full blown panic attack (something I haven’t had for over a decade, thankfully), but I’m still upset that the employees made me think that they were going to leave me stranded in Atlanta at all!
Although the train got a late start, it made up for it along the way and I got back to my home station at about 4:30 in the morning (less than an hour late). I confirmed that I cannot get much sleep on a train, which was a big frustration as I had to work at 9am which made for a very long day. Thankfully my husband is a night owl so it wasn’t too much of a hassle to get me home!
Next posts: the Society for Disability Studies conference in Atlanta, Flying with Wheels: TravelScoot edition, and probably a CONvergence post, plus more!
No lies, I’m bummed. I’ve been scooterless for a week now. Last Monday, we did my usual pre-class routine: my husband pulled the TravelScoot out of the car and I walked it down the driveway (the driveway is gravel and it hurts more to drive it down than to walk it)…to find that it wouldn’t turn on. No battery lights, no throttle, nothing. An electrician friend took a look at it, found a loose wire, but that wasn’t it. It looks like it might be the battery, but it looked like it was charging…
Anyhow, it’s been a long week without the scooter and I’m really feeling the effects of it. I miss being able to “walk” to campus. I miss being able to go to the library. I miss being able to have everything I need/want with me (the max I’m supposed to carry is about 10lbs). I really miss going to the campus gym. I was working out about four times a week…and now I’m down to none because I can’t get there.
My long days on campus end up being longer yet less useful. Today is my longest day on campus. With the scooter, I would zip to campus (no car!), go to work for a few hours, grab a bite & lay down somewhere for a few minutes if I needed, go to the gym, prep for my night class (sometimes while laying down, depending on how I felt post-gym), go to class, zip home. Today I had to drive to campus, pray for a close & accessible place to park near my office, hobble to office with my bag & crutch, work for a few hours while rotating ice packs because of inflamed nerves, grab a bite and lay down for at least an hour (likely several), then try to work on school stuff while laying down, then drive to the building my class is in (and hope there is parking in front of the building), then night class where I will be up & down & fidgeting & wincing & loopy from medication, then home.
There’s a pretty stark difference between the two. With the scooter, I sometimes have the spoons to go to the dance studio after night class (if I’m really careful in between work & class…and even then I might still end up spending half the class holding on to a wall to not fall). With the scooter, physical activity becomes part of my day because I haven’t pissed off the nerves that were damaged from my broken spine & spondy smashing them for years). With the scooter, my time in between scheduled events becomes more useful and more joyful (lying down with the scooter is a deliberate pacing of daily activity…lying down without it is more of a collapsing into a puddle, trying to not cry/vomit because I’ve walked a block to the nearest couch-like thing on campus).
Hopefully I’ll get my scooter back soon so I can get back to working out, kicking ass, and taking names….because a physically active Casey is a happy Casey 🙂
I’m working on a piece for Conditionally Accepted about how university classrooms aren’t designed with the thought that the professor might be disabled. For an example of something I’ve written here, my post about TAing this past summer has a photo of the standard technology podium that is too high for me to use even when standing because of my dwarfism (I’m even a tall dwarf at 4’11” thanks to medical technology)…forget even trying to sit at one of those and use it. Because of things like this, I’ve been much more aware of all the pervasive technologies in Western/US-centric society that are inaccessible to various groups of people (which is utterly ridiculous honestly….Universal Design is awesome, and thanks to my friend Pattie Thomas for the guest post about it).
I’m mentioning this because there’s a really awesome Kickstarter that I found recently. It’s entitled Online Training: Make Apps and Sites Accessible to All by Knowbility. They’re putting together a training to help programmers, developers, and other computer program related folks know and understand how to make their software accessible. Here’s their Kickstarter video with captions (because, funnily enough, Kickstarter’s video function doesn’t have a captioning component…that needs to change):
Money’s a little tight here as usual as I scraped together money for a conference registration fee, but even $1 helps them get rolling and it shows that people recognize the importance of accessible technology. Heck, the recent Reading Rainbow Kickstarter was funded by a lot of people donating $1 & $5…every little bit helps. Even just passing it along will help make it more visible!
I’m working out a lot of thoughts I’m having about my teaching gig this semester (I’m not a TA, I’m the actual instructor!). It’s been a heck of a journey, especially considering it’s what I would call a “non-traditional” course. It’s through my institution’s Learning Communities department and I have about twenty bright-eyed first year social science students trying to navigate their transition from high school to university life. I have a lot of freedom in the course, which is both awesome and terrifying. I’m also learning a lot about myself, including about my body in traditional classroom space.
Let’s start with the classroom I’m teaching in. Wait, let’s back up to the building that the classroom is housed in. I don’t know the history of the building, but it is mostly a residence hall that has a couple classrooms attached to it (I think they were a later addition to the building based on placement and door access). Because it is primarily a residence hall, most of the doors are locked 24/7 for safety. The classrooms are placed so there are specific doors that are open for ten minutes before the class time to allow the instructor and students that don’t live there in. While there are no stairs (and there is a sign that designates this as an accessible entrance), there is no button for the automatic door. I’m guessing if I had an electronic key for the black sensor on the outside wall it might open automatically, but that doesn’t help me as a keyless instructor.
The classroom itself has one of those sterile “modern yet traditional” vibes, which would be cool if I wanted to run my class in a lecture format all the time. It has a podium in the front corner that is too tall for me to comfortably use properly (right side for my student with the door on the left side). Actually, it looks a lot like the setup in this post I made about TAing, although my classroom has carpet. All of the tables are in five tight rows, with each table fitting two students each, and the rows are jammed flush with the right wall of the classroom leaving one aisle to get in and out of. There is no way to rearrange the tables for better group work, and if I had a student that had a mobility impairment, it would be difficult to find a place for them to sit comfortably (that’s ignoring personal seating preference, because that’s generally not even in the conversation about making a space accessible for students). The other problem with this is that this mobility impaired instructor can’t really “work the room” whether walking or rolling (wheeled desk chair or wheelchair).
Combined, they make a huge problem for me. I can’t see all of my students when I’m standing as I’m short. I really can’t see them when I’m sitting (and listening to my body). I can’t rearrange the tables into a circle so everyone can see everyone else. These problems made for a really rough first week of classes because I felt like I was being forced to ignore the people that I couldn’t see (which is really rough since it takes me a while to connect faces to names). It also became apparent that, while the university kinda sorta thinks about students with disabilities, there’s no thought to faculty or staff with disabilities.
Thankfully, I got this teaching gig from being scholarly colleagues with our director of learning communities, but where does this put me for any other academic job? Will departments that don’t know me personally hire me as a faculty member with my “special needs” in the classroom or office space? Will I just be another pain-in-the-ass gimp with a graduate degree barely scraping by with serial adjuncting as long as I don’t rock the boat too much with my activism or my needs/wants in a classroom?
I know that the change in direction in my work from mostly body size/fat studies to mostly disability studies (all with the physical activity focus) will mark me in a specific way…I think a lot of disabled scholars studying disability deal with this, whether implicitly or explicitly. It will likely be assumed when I enter kinesiology-focused spaces that I study disability because of how I move through the world (which could be a whole different post honestly, especially because a Deaf friend and I have had discussions about it).
For the moment, I’m trying to not focus on that and just trying to focus on what matters in my life right now….work/school/life/health balance, dance, getting over public speaking anxiety so I can focus on being a better instructor, finances, putting together my dissertation committee… 🙂
The TravelScoot arrived! Huzzah! I’m waiting for the seat back and a basket, but it’s really here! You all helped! The picture on the left shows it put together in my living room with my partner standing behind it with lots of bookshelves (that will be sad looking bookshelves if I ever get a full time professor gig as the at least half of those books will be transplanted).
So what’s with this anxiety thing in the title of this post?
Anxiety about ableism.
Anxiety about weight stigma mixed with ableism.
Internalized crap about my body size.
Internalized crap about my body’s ability.
This seems to be a process I go through with every incarnation of adaptive aid I’ve ever used in this broken spine journey. I did it with the cane, the crutch, the manual wheelchair. Part of it is a process of accepting that my body is unfixable with today’s medical technology. This is hard, especially post-surgery with the fantastic diagnosis of “failed back surgery syndrome” (no shit, that’s what it’s called….it has a more jargon-filled name as well, “post-laminectomy syndrome” but anyone with knowledge of medical terminology knows that that isn’t a particularly useful term). It’s hard looking at the compromised care I received because of my size and assumptions about what I do or don’t do with my body. The compromised care I received because of corporate health care telling my surgeon to just get things done as quickly as possible, without thoroughly talking to the patient (because I’m pretty sure that if my surgeon did this, he would have known that I have bilateral nerve damage from the broken & slipped vertebra, not just on the left side). Rehabilitation narratives are harmful when a person can’t be rehabilitated.
Another part is the constant fight with people that don’t understand that ability is a moving target for many people, not a fixed point in space. Sometimes that moving target is over a long period of time, whether it’s a downward slide like folks with degenerative disorders like muscular dystrophy or episodic like some forms of multiple sclerosis (MS). Sometimes that moving target is in the span of a single day. For me, it’s both (although I really try to only worry about the short term at this point so I can keep my long term worries focused on my PhD). If I’m careful about how I move my body and take appropriate breaks, I am sometimes rewarded with things like being able to bellydance (which, because of a rotten combination of schedules, money, & body crap, I haven’t been to a class or rehearsal since July).
That reward is not visible to anyone except for me and my husband and sometimes a few other folks if I chose to communicate that, whether verbal or not. Sometimes I’m not rewarded at all, and that sucks. Sometimes I’m able to push through even though I’m not rewarded, although I generally pay the price for days afterward if I make that choice. Either way, I know that spoon management (time/energy) is the most likely route to being able to do what I love to do with my body.
Even though I know this and can articulate this, I still fight myself. I’m afraid to use the scooter to go to campus. I’m afraid of the looks and the comments. There is so much violence, both verbal and physical, to people with invisible or variable disabilities that I’m afraid. While the scooter affords me the assumption that I can walk at least a little bit (versus the manual wheelchair that people see as a symbol of paralysis), it also carries the stigma that goes along with the anti-fat rhetoric rolling through society right now.
While the scooter means I will be able to be more active (both on an exercise/dance/fitness level and a “hey, now I can get around campus and can scoot to school/work” level), I’m confronted with my years and years of trying to be the Good Fatty and the Stereotype Defying Fat Person (mixed with some supercrip because of my congenital disabilities, just for garnish). I want to yell to the world that hey, now I can actually be able to do meaningful physical activity that will make me a healthier person!!….but there’s an underlying healthism to that as well by saying that I’m somehow better than the scooter fatty that doesn’t want to exercise.* News flash to my subconscious: there is no moral obligation to be healthy or to attempt to be healthier.
Right now I’m trying to keep up the mantra that using the scooter, especially on days where I work in my office and teach in a building a couple blocks away (which my spine absolutely loathes, on top of trying to stand while teaching), will lead to dancing and working out joyfully. I just need to ignore the haters and own my existence.
*As a kinesiologist, I totally want people to be more active, but I want that activity to be on their own terms. Coerced exercise, whether for health, weight loss, etc is counterproductive and harmful to a person’s mental health.