Wednesday, April 6, 2011

Fibromyalgia Disability, Miracles and Judgment

Praise the Lord!!!
Miracle in the alcohol aisle.

I was sent the above image with the caption via email yesterday from Virginia, a fellow fibromyalgia sufferer.  I must admit that when I saw the image, I was absolutely enraged.  What is disturbing is though this image and caption are absolutely ableist, I found myself filled with the desire to defend myself, based in large part because gatekeepers decide who is legitimately disabled. Unlike any other label, disability requires the approval of someone else, even though the individual knows best how their body functions.

I have personally been subject to the kind of disableist harassment that was expressed in the commentary for this photo.  The very idea that if you use a mobility device, and suddenly stand or take a few steps that you are faking a condition is pervasive.  For many, it is either full range of motion or paralysis. There is no consideration about the effort ad the cost of those few simple steps, or rising to one's feet.  We are placed into the position to put added stress on our bodies, specifically because society is built for able bodies.  No one even bothers to ask if people who have limited range of motion would stress their bodies, if the TAB made sure that people could negotiate the world? Even as I wrote that, I know that the ability to play super crip is also a privilege, because there are those who don't have the ability to push their bodies beyond certain boundaries.

I am quite sure that the person snapped photo, in part because the woman was reaching for alcohol.  This was absolutely an attempt to chastise her.  I think this yet another disbableist understanding of our bodies.  I am a social drinker and before I became disabled, I rarely had alcohol in my home. Today, alcohol is not just something I drink when I am out with friends, it is part of what I consider my medical treatment. When my fibro is flaring, and I simply cannot take it anymore, I will drink.  I know that this is self medicating, but I also believe that I have the right to manage my pain on my terms. For many, alcohol is not about enhancing a good time, but managing pain - both emotional and physical. I see no reason why I should apologize for this, and yet here I am writing this piece and justifying my choices.

I am particularly sensitive to claims that I am faking, because I know that fibromyalgia is a condition that many simply doubt. I have had a doctor tell me point blank that she did not believe in fibromyalgia.  This condition is further complicated because it largely effects women.  Medically the idea that women are simply hysterical and have no concept of how our bodies function is not a thing of the past.  As much as disableism is a part of the skepticism involving fibro, so is sexism. Fibro is a great example of the ways in which gender impacts our understanding of disability. It is discounted because it is difficult, if not impossible to medically prove, and because it happens largely to women, it certainly cannot be real. 

The lesson in this horrible little image is that a disabled body must conform at all times to what TAB believe constitutes disability, and that at any moment, one will be subject to discipline for stepping outside of what is believed to be one's assigned label.  There is very little room in this world for bodies that function differently, and though many walk around with the false belief that patronizing the disabled constitutes acceptance, ableism is an  everyday occurrence, that goes unnoticed accept for those of us that have to live with it.