A friend of mine in Greece asked me how it actually feels to be disabled. As she so rightly pointed out, we are constantly exhorted to consider the special needs of the disabled person, and to make special arrangements and concessions, but no-one ever asks the question, How does it actually feel inside? You know, what do you really really feel? Cut the suffering crap, and the bravery crap, and the martyr or positive gunge. Tell us what you really feel.
It’s a really interesting question, but I haven’t got an answer for it. It is as difficult to answer as, How does it feel to be able-bodied?
The answer must be, Well, it’s different for everyone
But, if only for the sake of my friend in Greece, I’ll try to assemble some thoughts on the matter.
The obvious starting point is the physical. I have multiple sclerosis (MS) and am blind, but I have absolutely no idea how it feels physically to have no legs, or no hearing. I can only speak for myself.
Physically, my MS feels like I am moving around in wet, heavy sand. Put your hand into a bucket of wet sand, and feel around for coins that were placed in the bucket before the sand. This is how my fingers feel. As a result, I’m nearly always tired.
My head always feels too heavy, and I have a constant dull headache, like a low-grade hangover. I describe it as like having a head full of mercury and wet wool.
The feeling is always there, but the debilitating fatigue comes and goes.
The emotional side is much more interesting, because I suspect that all disabled people feel similarly, whatever their physical problems may be. This is just a hunch, and comments may prove me wrong.
My emotional feelings about my MS are the same as those about my blindness, although, physically, they manifest in very different ways.
At first there was a cool detachment, a feeling of “this isn’t happening to me”. I think for some people this lasts for ten seconds, and for others it lasts a lifetime. For me it was about an hour, spent lying on a bed, feeling like I had been punched in the face.
And then I was angry. I still am, to an extent. I was angry at doctors, at governments, at my parents, at people in the supermarket queue who had trolleys full of crap food yet who looked healthy enough. I was angry with the MS, and with people who could run and skip and play guitar and wire a plug.
Oh . . . yes, I forgot . . . I was angry with myself, too.
Of course, this settles down to a rumbling, barely noticeable, background sadness. If I’m not careful, it can sneak up on me and say boo! Just as with anyone, really, the price of contentment is eternal vigilance.
I know, in a sense, we are all disabled. You, for example, can’t fly, or breathe under water, but these are different to not being able to walk or run. No-one can fly, but most people can walk. So it pisses me off!
It also, however, makes me feel special, like I am part of a select club. We even have our very own Olympic games that are just as exciting as yours!
This sense of specialness, together with the anger, is what makes some disabled people so difficult, rude and demanding. If the truth be known, we enjoy the fuss people make of us at airports and tourist attractions. Who wouldn’t?
But also, after many years, you learn to adapt. If you can’t fly you don’t jump off the Eiffel Tower, do you? What I experience is just who I am, just as it is for you, and so I just get on with it. I’m not going to be a brain surgeon, but then, I never was going to be a brain surgeon, was I? And I’m not going to be young again, and neither are you (unless you’re young at the moment, of course).
Most of us end up accepting what and who we are. Not everyone goes on reality television (that’s an oxymoron, if ever I heard one) to try to become something we’re not, and we become contented with our ordinariness.
And long may it be so. Avoid reality television and plastic surgery. Be like a river, and find ways round the obstacles.