Anxiety & Ableism

My partner standing regally behind the assembled TravelScoot
My partner standing regally behind the assembled TravelScoot

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.


3 thoughts on “Anxiety & Ableism”

  1. “Rehabilitation narratives are harmful when a person can’t be rehabilitated.” A million times this! Plus it’s another one of those lazy fobbing off onto someone else things doctors do when they can’t effectively treat you. So if you can’t be treated you must then magically be well/able enough to be rehabilitated. Taking the time to learn how to manage untreatable conditions would be a lot more helpful, not to mention logical.

    “Coerced exercise, whether for health, weight loss, etc is counterproductive and harmful to a person’s mental health.” Agree and IMO this is true for any form of medical treatment. The old paternalistic style of medicine needs to become of thing of the past as we adopt a new model of being partners with our medical professionals, all with equally valued input.

  2. I really enjoyed this post, I have the same thing about not wanting to be an electric wheelchair fatty so have always remained in a manual. I also struggle with the complete change of disability perception when I’m using my crutches (both recovering injured people and long term disabled people use elbow crutches in the UK) compared to when wheeling and find it unbelievable how often the question ‘what have you done to your legs’ comes up when crutching by complete strangers!

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