Monday, October 29, 2012

The future is cloudy

Author seated in wheelchair wearing black leather boots, black leggings, black pirate shirt, & black leather hat, with partner wearing khaki pants, turquoise pirate shirt, and green tam.
My partner & I at the Carolina Renaissance Festival
I  just want to give you all a quick personal update.  I've spent the past two weeks in the throws of a pain spike that I initially attributed to my fracture shifting.  Last week, I finally went into Urgent Care and have spent 4/7 days in a doctor's office to see what had changed with my mess of a spine.

The short version of the story is that I have another fracture on my L5 vertebra on another stabilizing point.  This is causing neurological signs of spinal cord injury (instead of just peripheral nerve damage).  I'm waiting to hear about the results of an MRI that I had on Thursday to see if avoiding spinal fusion is still an option.

Based on what I've gathered from all these physicians is that I may not be able to avoid the surgery much longer, or I risk losing bowel and/or bladder function along with more mobility problems.  If it was a matter of just mobility impairment, I would probably keep waiting.  However, the combination of pain levels that hover between a 7/10 & a 9/10 (along with the increased risk of loss of bowel & bladder function) may make the surgery a more urgent concern.  While I wait for the appointment with the orthopedic surgeon, I'm pursing a second opinion with a neurologist and trying to see if I can find a spine specialist that performs fusions on people with some sort of dwarfism (I don't want the surgery to fail just because the surgeon doesn't understand that pituitary dwarfism impacts bone density and healing).

In the meantime, I'm doing my best to keep my life afloat in the midst of chaos.  It's hard to do my scholarly work with this much pain, and the anxiety of not knowing what the future holds for my body.  I'm also not sleeping well because of breakthrough pain, leg spasms, and electrical jolt-feelings down my legs.  I'm also really concerned from a financial standpoint, as the US medical system is really broken.

It's hard, really hard.  Hopefully I'll at least have something solid, even if it's bad news.  Dealing with the knowable, no matter how bad, is sometimes easier than dealing with the unknown.

Tuesday, October 23, 2012

The system is making me broke/n

Blurry photo of a grey tabby cat with a stuffed penguin on a beige & grey couch
Serenity, my grey tabby*
As a working disabled person in the USA, our system sucks. Because we don't have socialized health care, a person in my current situation has very few options. I have insurance through my job (student insurance, but still). No job/school, no insurance. I'm unable to work most 40 hour a week jobs due to this spine fracture, so quitting school to only work isn't an option (especially in this economy, especially because disabled folks are discriminated against in the workforce). Part time jobs usually don't have benefits. That would potentially leave me with trying to get on disability to get Medicare to have spine surgery.

This system sucks. If we had universal health care, PwDs could work without facing the potential loss of health care...which would make for more tax payers (yay capitalism). It would also be cost-effective because preventative health care is cheaper than ER visits (and I saw a lot of folks last night at Urgent Care with issues that would have been best treated at a primary care facility).

ObamaCare isn't enough. Look to Europe, Canada, Cuba....look at what economists call "developed" or "industrialized" countries, and look at what we're lacking. Then think back at stories like mine, where I'm literally in tears wondering if our health system dysfunction could inevitably lead me to having to take a leave of absence from school (and work, as my job is dependent on me being a grad student). Please. I know this rant is fueled by pain medication, frustration, & tears, but there's a reason. I'm definitely not the only one in this position.

*The photo is random...just a blurry photo of my elder cat Serenity in front of a stuffed penguin a good friend gave to me.

Thursday, October 18, 2012

You don't have to love your body

Today is Love Your Body day and I wanted to give my readers permission to do something that may seem possibly counterintuitive, transgressive, or pessimistic.

You don't have to love your body.

You don't.

Sometimes bodies do things that are out of our control.  Sometimes they are sick, broken, or cause pain (physical or mental).  Sometimes they keep us from doing things we want to do (like bellydance or CrossFit).  Some days our physical bodies interfere with our mental states, and some days our mental states interfere with our physical bodies (I know, false dichotomy, Cartesian-style...but it's still useful). Some days our bodies cause some major issues in our lives, and it's ok to be upset by it.  Bodies can be expensive with medical bills, adaptive equipment, various products taken internally or externally, various foods that either make us feel better or worse, various physical activities that impact us in different ways on different days.

I'm going to be honest and blunt and profane.  Right now, I fucking hate my body.  I'm living in a haze of pain and painkillers and breakthrough pain.  I'm living in a state of jealousy where I envy their ability to do the things that I want to do, and their ability to not just lose words and trains of thought because of pain spikes.  I mourn the loss of my more abled self, even the one that was still in daily pain and nerve problems but was able to still push mentally in scholarly contexts and physically in athletic contexts.  I'm embarrassed by the emails I've had to send to professors and peers about my semi-bedridden life, compounded by the fear that my disability is feeding into popular notions of the fat body as a lazy, inherently broken body.  I'm constantly wasting energy expecting unwanted advice, comments about how my body is something scary and untouchable, and what happens when the "get better soon" well-wishers find out I might not ever get better (and whether or not to just graciously accept the lie or tell the truth).

Black and white photo of author on road bike with helmet, Erik's Bike Shop jersey, spandex cycling shorts.  Text says "I STAND for fun physical activity for all. Weight =/= health"
My STANDard, photo taken in 2007
On better days, I can get to the point where I have a dysfunctional relationship with my body, full of ambiguity and ambivalence.  A day where I can more readily accept the neoliberal notions of body acceptance as an individual process.  Those days where I see the beauty in the dissonance, much the same way as the author from Building Radical, Accessible Communities Everywhere states in this Love Letter to My Body.  Some days I'm able to revel in what my broken body gives to me despite (and sometimes because of) it's brokenness.  My broken body has shown me who in my life is worth keeping around and who isn't worth the few spoons I have in my daily arsenal.

Today is not one of those days...but that's ok.  My fracture shifted two days ago, causing the most pain I think I've ever been in, even greater than when I actually broke my vertebra.  It makes life really difficult right now, particularly with my doctoral coursework.  My pain is not under control, and with the recent change-up in my medical team, there isn't much I can do about it short of going to the emergency room or hiding in my apartment.  It is what it is, and it's one of those times where self-love is a load of crap and I'm dependent on the love of others to get me through....but it'll be ok.

See, I don't have to love my body, and neither do you.

Monday, October 8, 2012

The language of dis/abled sport

Video is from the UK's Channel 4, advertising the London 2012 Paralympics through it's "Meet the Superhumans" ad.

Adapted sport, challenged athletes, disabled sport, Paralympics, Special Olympics. These terms use language that bifurcates sports that are explicitly for people with disabilities. This split creates a power dynamic that impacts various cultural flows (Appadurai, 1990). By separating sport categories by ability or impairment, and more specifically by adding qualifiers like "wheelchair" to basketball, "blind" to football, or "para" to triathlon, a subject versus object divide is created that makes the disabled athlete othered by the alternate designation that demarcates itself as different or separate from the prototypical athlete. This invokes an ideoscape of adaptation that makes the disabled athlete viewed as disingenuous at worst or an inspirational novelty at best.

Athletes that require the least amount of adaptation to their sport ventures are privileged. Since the archetypical Western athlete is seen as one that is white, male, able-bodied, and a good citizen of his nation-state, any deviations of this body lends itself to embodied qualifiers. In women’s tennis, Venus and Serena Williams are many times constructed in terms of their not-whiteness, with whiteness considered the default tennis player (Douglas, 2005). Any time their perceived behavior deviates from the script of the archetypical athlete (particularly when the behavior is thought to threaten the interests of the nation), their otherness is highlighted. This is also evident in the case of many indigenous Australian athletes in the Sydney 2000 Olympics (Gardner, 2003; Elder, Pratt, & Ellis, 2006), as well as with the black United States track and field athletes in the HBO documentary Fists of Freedom (Stem & Roy, 1999). The more the hegemonically atypical body resists the mold of the good citizen-athlete, the more resistance it encounters in its athletic pursuits. Resistance itself sometimes forces ideals and institutions, both sporting and general, to adapt.

While adaptation is a common concept in terms of discussions of disability and impairment, it’s a concept generally used to refer to when an existing environment has been retrofitted to accommodate a specific person or group of impairments. Adaptation as a concept assumes an essentialism that privileges the status quo and enforces neoliberal constructions. Stone (2001), when discussing the shift from a collectivist society to a neoliberal one, refers to this as the “’four selfs’:self-respect, self-confidence, self-strengthening, and self-reliance” (p. 58). For a disabled body to be able to be accommodated in society, the person must be able to request the environment be changed in a manner that complies with the policies, procedures, and practices of that setting. The person must also have a familiarity with the financial and technological ramifications of the request for accommodation, and be prepared for the social implications that follow that may require the person to justify their continued need or desire to exist in that space (an opposing viewpoint on accommodation and environmental adaptation is through a concept called universal design, in which an environment is not retrofitted but is constructed to consciously allow as many types of bodies to function at their peak).

Adaptation in regards to sport and athletics is mostly used to denote sports for people with impairments (although can be used in the context of athletic training to refer to physiological adaptation to effort, muscular capacity, or the like). For example, wheelchair basketball as an adapted form of (standard) basketball, sitting volleyball as an adapted form of (standard) volleyball, or ice sledge hockey as an adaptation of ice (standard) hockey. These sports that have abled analogs are usually the most well-known. This is in part due to a palatability factor, for example popular culture’s fascination with the violence inherent in wheelchair rugby, also known as murderball, and partially due to a familiarity factor, in which the adapted sport resembles an able-bodied analog that the audience has previously watched or participated. The advertisement that the British television station Channel 4 created for the London 2012 Paralympics is a good example of this palatability of adaptation. Which bodies are included? Which sports are highlighted? What’s missing?

Elite athletes that participate on the international scene, specifically Olympic or Paralympic athletes, have media narratives that may attempt to generate interest in a particular team, a particular event, or a particular sport. For example, Oscar Pistorus is a track athlete that competed in both the Paralympics as a division F44 athlete and in the London 2012 Olympics. He was one of a very small number of disabled athletes that claimed a sort of dual citizenship in the elite sport world by participating in both events. Many news pieces that discuss his athletic success place his success in light of the congenital impairment that led to the amputation of both of his lower legs, sometimes in vivid detail. The idea that impairment must be biomedically justified combines with the media narratives that require a tale of struggling and overcoming one’s disability to create a supercrip. Supercrip (and superhuman or superhero, in the case of the aforementioned Paralympics ad) narratives are intertwined for disabled athletes.

While disability may indeed be a valid addition to the narrative of the super-elite athlete much like other narratives of struggle against other life adversity, the focus on the origin of the disability (whether congenital or acquired) makes the idea of disability as always able to be overcame a problematic construct. These narratives create a divide between levels of impairment and also levels of socially constructed disability because of the involvement of technoscapes and finanscapes (Appadurai, 1990). Those with more access to fiscal resources, whether by charity, employment, or other means, are more likely to be able to navigate their chosen environment in a way that meets their needs. This means that Pistorus is more able to be seen as able-bodied through the adaptation of specially designed carbon fiber running prostheses (although it could be argued, in Pistorus’ case, that the technology involved clearly marks his body as super-abled or possibly cyborg).

While the concept of adaptation is generally seen as constructive and beneficial to people with disabilities that participate in adaptive sport, it is critical to keep questioning the impact of adaptation on the construction of the disabled body. The continual focus on adaptive sport may overshadow the ways that the disabled community has contributed to the sporting world, like the history of the Gallaudet University football team’s invention of the huddle, and also overshadow the other ways in which people with disabilities find themselves in sport and physical activity.

Dear readers, what do you think?  Does the concept of adaptation impact how sports for people with disabilities are viewed?  Would combining the Paralympics and the Olympics change the perception?

Author sitting in her wheelchair, flexing her arm before a 5k race
My first wheeled 5k...I was the only wheeler

Appadurai, A. (1990). Disjuncture and difference in the global cultural economy. Theory, Culture, and Society, 7, 295-310.

Bernstein, R. (Producer) & Roy, G. (Director). Fists of freedom: The story of the ’68 summer games [motion picture]. United States: Home Box Office.

Douglas, D.D. (2005). Venus, Serena and the WTA: When and where “race” enters. Sociology of Sport Journal, 22, 256-282.

Elder, C., Pratt, A., & Ellis, c. (2006) Running race: Reconciliation, nationalism, and the Sydney 2000 Games. International Review for the Sociology of Sport, 41(2), 127-141.

Gardner, G. (2003). Running for country: Australian print media representations of indigenous athletes in the 27th Olympiad. Journal of Sport and Social Issues, 27(3), 233-260.

Stone, E. (2001). Disability, sport, and the body in China. Sociology of Sport Journal, 18, 51-68.

Thursday, October 4, 2012

Trusting in the system

Author in 2009 bellydancing. Photo is black & white, with short hair, black long sleeved crop top, tiger print hip shawl, and black flared pants with tattoo showing on pale skin, performing a standing layback.
Pic taken in 2009 by Dave Stagner
A "comrade in spine crap" of mine started going to the same orthopedic clinic that I've been going to for pain management.  I've had a pretty decent relationship with my nurse practitioner there, so he started seeing her as well.  I saw her in the beginning of August, and he saw her towards the end of the month.  He found out that she was leaving at the end of the month, and I think my jaw hit the floor.

I felt like I'd hit the jackpot with this person.  I was able to be frank with her about symptoms and pain, to express my Health At Every Size standpoint, to let her know that I was a bit of a medical geek and had done a lot of research about my various spinal conditions as well as my birth defect-related minefield.  When I was trying to figure out if I should pursue spinal fusion, she gave me some markers of impairment that she thought were appropriate signals to revisit surgery.

So I found out from my friend that my NP left at the end of August, and that she didn't tell me at the appointment.  My first feeling was betrayal, then mourning, then panic.  I take narcotic pain medications and muscle relaxers daily (up to four times a day depending on the medication & how much pain I'm able to tolerate).  She understood that I usually refused to medicate my pain enough because of the side effect problems (want to try to do deep sociological analytic work while on narcotics?  For me, it's extremely difficult).  She also didn't treat me poorly because of my deep understanding of my various medical conditions.

You see, when your physiology is complex enough that general practitioners won't see you ( university's student health center has told me this recently, which makes life more difficult because my insurance requires me to use them for "general health" needs), there can be this tendency to latch on to any professional that doesn't treat you like a freak of nature.  I latched on to her fiercely.

Now?  I'm feeling lost.

I wouldn't even be seeing her for another month or two because of my prescription refills and our mutual understanding that I might just get slowly worse.  We both knew that I'm losing function and feeling.  We both knew that there was no literature about spinal fusion success in people with pituitary abnormalities, and that I wasn't willing to be a case study (well, if someone would put me as second author maybe...just kidding).  She was forthright but gentle, and had one of those faces that always seemed to tell me that life sometimes sucks but it's worth the fight.

She never told me to quit school.  She never told me to quit my job.  She told me to keep being as active as I could.  She affirmed my athletic identity.  She did tell me to quit powerlifting (I didn't initially listen...I'm stubborn when it comes to something I love).

Now I have to either trust whoever takes over her position or find a new clinic.  I have to trust that, whichever option I chose, the provider will treat me with respect, will respect my knowledge of my physiology, and that will understand that my pleasant face is many times just a mask hiding pain and uncertainty.  I have to hope that I won't be shamed for my fat and that my broken spine won't be pinned on my size.  I have to hope that the person knows that sometimes my medication noncompliance is due to my scholarly work that I refuse to give up even though it becomes more difficult, both because I'm a doctoral student instead of a masters student and because the pain seems harder & harder to manage.

I have to trust in the American medical system to help make it ok, and I'm petrified.