Today
being disabled sucks. Today my back hurts, my butt hurts and my eye is
twitching and I only have frozen fish in the freezer to eat for dinner. Today
I’m not in the mood to qualify, to navigate the complex emotional and
philosophical nature of disability. No, today I’m sore and I want to know who
is responsible. This side of disability isn’t cute, or really that complicated.
It is just a day, an occasional day in which the various burdens of disability
feel heavier, almost intolerable. There are days when disability only
represents closed doors and lost opportunities, a continual source of
discomfort that will follow me for my entire life. This is largely a fallacy I
admit, an oversimplification, but it is one I am sometimes incapable of identifying
as such. I don’t like being disabled on days when the buses don’t run. I’m
afraid of being disabled on days when the supports of family or friends fail me,
if only for a moment. I never look forward to the enduring moments in which I
have nothing to do but saturate in the juices of self-doubt, a subtle but
persistent resentment of my disability in all its forms. On those days my spine
isn’t art, it isn’t beautiful. On those days it just hurts. It hurts and it
hurts and it hurts a dull and irredeemable pain, neither profound nor
illuminating. It is just pain, without purpose or remedy. This is when my body becomes
a trap, an extension of all the tragic and macabre stereotypes of disability. These
days are not common; they do not dominate my life. Still, they exist and to not
acknowledge them as a part of this experience would be disingenuous.
I love my disability, I trace every aspect of who I am back to my disabled experience, yet I can in a moment find myself harboring stronger resentments against it then I would have thought possible. I’ve written extensively on the amazing texture and breadth of the disabled life. But, if I were to ignore the sometimes horrible realities of life with a severe disability, I would misrepresent this experience in its entirety. Acknowledging the horrible, or the profane elements of disability does not devalue people with disabilities, it brings light to our unique challenges. There is no shame in complaining once in a while about our discomfort. Talking about our struggles is natural and essential. Disability is complex and it sometimes totally sucks; it is ever a mass of irreconcilable thoughts and impulses, joy and pain doled out in wildly uneven arcs. It is precisely this depth of feeling, this mess of ideas and impulses which make me so sure of the significance of the disabled experience. If the disabled perspective was simple, easily digested, it would be easily dismissed. No, Disability is contradiction, irreducibly complex, a web of seemingly contradictory beliefs and impulses. It is a collection of authentic moments which can sometimes lead you to questions with no clear answer. Yet, sometimes pain is just pain.
Not every struggle demands a deep purpose other than to highlight future moments of calm and comfort. Thankfully, my life is not about clarity or clear irrefutable answers, nor is this blog. I value these complexities, and try to accept all elements of the disabled experience, tragic or otherwise. To live genuinely is a worthy goal I think, and this blog has been infinitely valuable in that regard. Honesty in the moment is a purpose all its own. Today my back hurts, and I’m telling the world. Tomorrow we have more important things to discuss. Thanks as always to everyone at DRI and anyone who reads this blog for allowing me to explore the disabled experience, sore or not.