Inspiration Porn

 I’ve stopped using busses because I was scared I’d have a full on PTSD episode if attacked. We have a few cases each year of someone pretending not to know that guide dogs are allowed into shops. The ‘doubting people’ thing is a flaming epidemic here doing that thanks to our press and government using supposed benefit fraud (less than 0.5% across _all_ benefits including pensions) to demonise us all. Net effect? It depends on who is doing the judging and what their prejudices are as to whether I’m read as the ‘poor disabled (real) girl’ or ‘one of those scroungers’. We all have to either be one of the ‘good ones and heroic and inspiring’ or an evil drain on resources, we’re never just…folks. Ironically, we even had a case of a man who has been awarded an honour by our PM for services to volunteering and sport but he’s just losing the housing that gives him the support to continue that work…)

Inspiration culture is a funny thing. I turned down one disability magazine because it thought I had ‘real passion and was an inspiration’ when what they were missing was that I was ‘inspired’ to change their-house style to a less patronising one! Inspiration culture can be very othering and it’s one of those things that is so common that you feel you’ve failed if you never get told you’re ‘it’ and yet it can become the ‘thing’ people say when they meet you to the point that a lot of us feel people see the inspiration and not the person you are behind it, irritable, sunny, bookish, sporty, daft, serious, just getting on with life, historian, mother, wife, scientist. Take Stephen Hawking. We all know he must have inspired a generation of young physicists, we know he is a galaxy of stars brighter than most of us, yet get an interviewer to talk to him and they just can’t help sounding a wee bit nervous and trite and it isn’t because of his brains, they really don’t know how to talk to him without talking down to him.

I frankly don’t do sports and visible art, I don’t use the bits of my body that don’t function so well to paint masterpieces or climb **** walls with my left hand – believe me that would be a challenge- but it still wouldn’t look very dramatic or even terribly difficult. In fact, meet me face to face and your hind-brain is probably saying, “Oh, she’s not that disabled after all, she’s one of us, not one of ‘them’. I just look a bit clumsy, sometimes I’ll stumble a bit. I probably won’t bother to demonstrate how difficult it is for me to carry a cup of tea without ending up painting the carpet with it, because I’ve learnt that while it looks determined and dramatic in people with more obvious forms of CP I just look as if I’ve been a bit careless and anyway, why waste time mopping up tea when we could be eating cake and hashing out feminist or LGBT issues? So, I’m not really that inspirational, if your idea of inspirational is watching a circus act performed against the odds.

But even if I don’t look like your idea of an inspirational disabled person, then  inspirationalism can get in the way of meeting ‘me’ precisely because if a disabled person doesn’t look as though life is a struggle, people tend to judge them and decide they aren’t ‘all that disabled’. This may be broadly accurate. I’m sure my impairment isn’t as hard to work with as that of someone whose limbs visibly have to be fought with each step of the way across that carpet – which is a lot less flat than you might think if you have perfect balance and have never tried unfamiliar shag-pile without being in posession of a  personal centre of gravity. But it has to LOOK difficult to be real… to ‘perform’ for the able bodied gaze. You have to ‘look’ disabled, to struggle, to provide a view that makes other people feel LUCKY they aren’t you.

If it sounds as though we’re getting at the people who only mean us well and who are really genuinely impressed by disabled people and all we do, let me explain more about where this all goes wobbly – even though you can’t see it 😉 I’ve had medicos and folk turn it into a full-on microaggression because it is implied that you are somehow not trying hard enough if you aren’t out doing sports and ‘inspiring’ stuff. I even got told once by a Dr in an emergency clinic (I’d run out of my cortisol replacement)  that all my fatigue was in my head and that if I just “Grew a backbone” I could climb Kilamanjaro. I was never quite sure how he thought a person with CP who’d worn themselves to a ravelling and a macroprolactinoma doing 11 GCSEs, 3 A levels and two degrees (and the odd bit of swimming, skiing, camping and novel writing) lacked backbone!

But…… it still wouldn’t look very dramatic or even terribly difficult. It is in fact horribly difficult to get the bits of my brain not screwed up by brain damage at birth to do certain things and especially now that things I used to be good at like writing are a real challenge because they’re are times when it would be nice if the effort was, well, ….obvious, because working really hard to the point of shaking and dizziness and nausea on a piece of writing then having people assume it all came easily and this shows you could be a full time journalist if you _really_ applied yourself is really frustrating. In fact, it’s one of those times when I’d sell my soul for writing to ‘look’ difficult’.

Meet me face to face and your brain is probably saying, “Oh, she’s not that disabled after all, she’s one of us, not one of ‘them’. I just look a bit clumsy, sometimes I’ll stumble a bit. I probably won’t bother to demonstrate how difficult it is for me to carry a cup of tea without ending up painting the carpet with it because I’ve learnt that while it looks determined and dramatic in people with more obvious forms of CP I just look as if I’ve been a bit careless and anyway, why waste time mopping up tea when we could be eating cake and hashing out feminist or LGBT issues? So, I’m not really that inspirational, if your idea of inspirational is watching a circus act performed against the odds.

But even if I don’t look like your idea of an inspirational disabled person inspirationalism can get in the way of meeting ‘me’ precisely because if a disabled person doesn’t look as though life is a struggle, people tend to judge them and decide they aren’t ‘all that disabled’. This may be broadly accurate. I’m sure my impairment isn’t as hard to work with as that of someone whose limbs visibly have to be fought with each step of the way across that carpet (which is a lot less flat than you might think if you have perfect balance and have never tried unfamiliar shag-pile without a personal centre of gravity) . But it has to LOOK difficult to be real… to ‘perform’ for the able bodied gaze. You have to ‘look’ blind, to struggle, to provide a view that makes other people feel LUCKY they aren’t you.

If it sounds as though we’re getting at the people who only mean us well and who are really genuinely impressed by disabled people and all we do perhaps let me explain more about where this all goes wobbly (even though you can’t see it) I’ve had medicos and folk turn it into a full-on microaggression because it is implied that you are somehow not trying hard enough if you aren’t out doing sports and ‘inspiring’ stuff. I even got told once by a Dr in an emergency clinic when I went because I’d run out of my cortisol replacement that all my fatigue wasin my head and that if I just “Grew a backbone” I could climb Kilamanjaro.” I was never quite sure how he thought a person with CP who’d worn themselves to a ravelling and a macroprolactinoma doing 11 GCGEs, 3 Alevels and two degrees (and the odd bit of swimming, skiing, camping and novel writing) lacked backbone!

I don’t want to climb Kilamanjaro, I want to pick my ‘mountains’ and I chose language and ableism as my mountain! I used to ski. I enjoyed it, beating my best might be ‘arriving at the bottom whilst staying upright’ but still….it’s the fastest I travel under my own power and momentum! My physio says I’m fine to take it up again: ‘it’s your body” (!!!) I’d love to but I’d have to give up something else ….pain-free days forever? I want to learn to sail because I come from a family of sailors. Stupidly they decided I ‘wasn’t any good at it’ but wasn’t disabled ‘enough’ to go on trips to learn…   The ‘inspirational’ often have an odd sort of privilege (that I’m not sure is one –  of getting to do stuff because it IS difficult and inspiring.

 


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