the unavoidable prefix

How do you know if someone is disabled?  A wheelchair?  Missing limbs?  Dark glasses and a guide dog?  There are those cliched visual cues, but of course, people can be disabled in very subtle or entirely invisible ways.  Psychological disorder, extreme fatigue, even chronic pain can be difficult to discern in casual encounters.  And there are many people who are unable to enter into the public domain, due to a mis-fit between their bodies and the environment, so they themselves become somewhat invisible.  People can be disabled in one place and not in another.  Or, one day we’re moving confidently through the world, and the next suddenly all the ramps seem to have become stairs.

spiral staircase

What is disability?  The prefix dis- means “apart” or “away”.  It suggests an action, a movement from an intimate connection to a profound distance.  Yet even this distance implies unavoidable relation.  And this is not just a question of time, as in “I was once able-bodied”.  Nor is it a question of compensation, of the kind seen in media portrayals of paralympians, those who “overcome obstacles” with their “superabilities”.  The connection between disability and ability, I think, is much more subtle and complex.

It’s obvious (to me anyway) that there are formidable abilities intertwined with disability.  Not only such phenomena as the adoption of echolocation by some blind people, but also the astounding determination of people with obscure or ill-defined bodily conditions who are shunted from one ignorant or patronising medical professional to the next, the creativity of people experiencing depression who continually improvise new ways of maintaining well-being, the unique and profound insights of all those considered “other”.

I also suspect the opposite is true – underneath the surface of ability is disability.  We’re vulnerable, changeable, and our abilities are limited and temporary.  Whether we’re disabled or not, there is a disabling to our lives.  Not so much a noun as a verb.  Life itself is an enabling condition and a disabling condition at the same time.

About a year ago, something happened to my body that seemed very sudden.  An intense humming, radiating pain appeared, deep in my hips.  Mostly in my right, but also in my left.  Around these joints, a stiffness took hold.  Muscles and ligaments in my legs became tense and felt unstable.  Walking was painful and awkward.  Even sitting for any length of time would bring it on.  From somewhere deep in my body, pain was gushing out of a seemingly bottomless well.  What had happened?  Is this what I am sentenced to now?  Is it just going to get worse?

X-rays revealed the beginnings of osteoarthritis.  The cartilage had worn down only mildly thus far, but the degree of deterioration doesn’t predict the subjective experience of pain.  At times, I’ve felt in agony, crippled.  A year on, I’ve accumulated a raft of strategies – supplements, painkillers, walking (while trying also not to over-exert), allied health professionals, swimming, meditation, and just generally trying to live my life, consciously and carefully.  All of which is of some help.  Yet none of which completely removes the unpredictable undercurrent of pain.

Am I disabled by it?  It feels like it sometimes.  It certainly limits me.  This week has ranged from distracting to unbearable.  But part of the dis- of it is shock – I am having to reconfigure my sense of who I am and what I am capable of.  To confront the fact that identity is an abstraction, the body in continual flux as it struggles with the twinned forces of optimistic regeneration and realistic decay.

I have known for most of my life that I have Marfan Syndrome, and that this often leads to early onset osteoarthritis.  Until last year, I considered myself lucky to have eluded pain, and perhaps thought I would continue to.  I was a paradox – a person with a highly unusual body shape whose only hurdle in moving through the world was people’s prejudices.  No longer.  With this pain, I feel that I am becoming the crippled person of other people’s imagination, and I resent it.

Well, at least today I do.  Things change, and can change again.  My body reminds me.

misc 015

Disability is socially constructed and can therefore be deconstructed (or reconstructed).  It is also bodily, and sometimes it can be alleviated or even resolved.  Particular people are labelled disabled.  But there is a disabling within (and between) every body, which is unavoidable and sovereign.  It is in our molecules and in our social arrangements.  It comes before us, and will come after us.  It humbles and embraces us.


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