When getting out of my wheelchair to climb into the car I have two signature moves. One is to stand up and to loudly declare to all who can hear "it's a miracle!" The other is to steer my chair level with the seat and move my bum over as if my legs are paralysed. Which one I choose depends whether I'm in a belligerent mood, or a vulnerable one.
I can stand, just not for long, and I can walk, just not very far. I need to use my wheelchair in order to have a hope of going anywhere beyond my own home. Limited as my mobility is, though, I am still made to feel like a con artist for using a wheelchair. You see, society says that to use a wheelchair you must have paralysis. The only exceptions to this rule are people with broken limbs and the elderly. The movement of limbs is a way to sort the inspirational cripple from the thieving scrounger.
Over the last few years I've become increasingly aware of raised eyebrows when I get out of my wheelchair. A couple of years ago when taking my children out for the day, the woman deciding whether or not I deserved a disabled person's ticket asked me, "are you stuck in there? It's just I need to know if you're one of those people who can just pop in and out". My moral worth was to be measured by how many steps I could take. A wheelchair is key to leaving the house for people with a huge range of conditions, including those experiencing fatigue, yet we're constantly told we need to justify our usage.
And so, it comes to this: either I allow people to see me stand from my wheelchair and accept that they will assume I am morally deviant, or I play the game and look like the disabled person they deem worthy enough, and get on with life in the usual way. I often choose to play the part which alienates me and others like me most – the media stereotype of the worthy cripple.
Not all disabled people are automatically hated, you see – not in all situations, at least. There are certain things we are good for. Do you have a media story that needs an extra sentimental push? Roll in the cripple. Are some non-disabled people feeling a bit deflated, and in need of an inspirational boost? Our achievements make perfect memes, especially if we have won a Paralympic medal or swum the Channel. This creates a paradox: ‘real’ disabled people must be completely bedridden in order for their disability to be legitimate, yet if they want to win respect rather than just well-intentioned pity, they must be capable of incredible physical achievements. We are Schrödinger's cripple, simultaneously high achieving and entirely incapable. That is our Paralympic legacy.
I would love to tell you that this begins and ends with what strangers think, but the outcomes are far more serious. I have spoken to many disabled people who fear for their benefits - the money they need to live on - should their neighbours make decisions about them based only on what they cannot see. Disability hate crime has increased in recent years, from street harassment to assault, and this correlates with the scrounger narrative pushed by successive governments and the right-wing press.
They take the fraud rates for disability benefits, estimated at 0.7%, and exaggerate them, so that every disabled person is presumed to have even odds of faking their disability. This distorted link between fraudulence and disability leads to our every economic decision being viewed with suspicion. Those all-too-familiar arguments about benefits being too high if people can afford widescreen televisions, mobile phones, cigarettes and alcohol are constantly thrust upon us. A self-flagellating disabled person can be donned with a crown of thorns and presumed to be genuine, but one who drinks, smokes and watches Jeremy Kyle on a large television is a scrounger and a faker. One must not exercise consumer choice.
Performing disability, so that our unique needs conform to society's version of what being disabled should look like, is an act of self-preservation - a means of avoiding economic destruction or physical punishment. In order to be deemed worthy we have to abide by certain rules. Do not: stand, buy anything, drink, smoke, walk, have a Sky dish, keep your curtains closed (even if you're photosensitive), drive a Motability vehicle, be bedridden, be fat, watch daytime television, be offended by scrounger narrative ("they don't mean genuine people like you"), have children, become a single parent, go to theme parks, live in a council house, get tattoos, claim benefits, get a mobile phone (especially not an iPhone). Do: win a Paralympic medal, lose your puppy and appear in the media, become a millionaire, swim the English Channel, and raise millions for charity. See how easy it is to be accepted?
Guest posts
Guest post: Invisible illness - 'I'm fed up of having to perform my disability'
MumsnetGuestPosts · 26/01/2015 13:07
This blog post rings very true.
Only earlier, as I was walking very slowly to pick up dc from school, I spotted a couple huffing and gesticulating as I was walking past (therefore blocking) their drive as they were trying to move their car out.
It occurred to me that had I been using my walking stick they'd have no doubt had at least a bit more sympathy. It made me wish I had my stick with me for that precise reason.
But as I'm trying to strengthen the muscles in the side of my body that don't work very well, the stick is counter-intuitive, so I opted for the very slow and painful walking instead.
Because, naturally, as I'm only 30 I'm just hobbling along at a snail's pace with a pained expression for shits and giggles, and to inconvenience the rest of the general public.
And the fact that living with chronic pain for years is destroying my mental health is really helped by random members of Joe Public who feel the need to pass comment, or huff and gesticulate at me from their cars.
Not to even mention The Job Centre 
DP has been disabled since birth. His condition worsened recently so we decided to get a blue badge. The very first time we used it after he'd had a major operation we got some stick from a taxi driver for using a disabled space. We have a nice car and the assumption is disabled people can't afford such things. The look on the taxi driver's face when he saw DP get out of the car was priceless. He was using crutches as he'd just had one of his legs amputated 
Can I slip in 
here to the very many lovely people who don't behave like dicks - with extra special thanks to the railways, who've always been wonderful to me.
You revive my faith in human nature.
God knows I need it on days dealing with the DWP.
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