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Guest post: Invisible illness - 'I'm fed up of having to perform my disability'

132 replies

MumsnetGuestPosts · 26/01/2015 13:07

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?

OP posts:
PavlovtheCat · 26/01/2015 14:22

got to head out to get kids, but will post properly later. Spot on, you summed up my fears, worries, thoughts about disability and social attitude.

PausingFlatly · 26/01/2015 14:24

This is all so familiar.

Especially the "oh they don't mean genuine people like you". Well it bloody well felt like me when my incapacity benefit was wrongly stopped for nearly 18 months.

I don't leave the house very often. Lucky me. Means I'm spared much of the judginess. But not the fear.

On the plus side, I've perfected the broad smile and the staring straight in the offender's eyes, while pretending they're actually being nice.

"But you got up."
"Yes, I'm so lucky to be able to do a few steps!"

"You don't look ill."
"Thank you! It's always nice to hear that!"

MrFMercury · 26/01/2015 14:25

I'm applauding too. You sum up my own experience very well.

chrismuk · 26/01/2015 14:33

Well said. I agree wholeheartedly.

LostInWales · 26/01/2015 14:38

Excellent post. I have a Blue Badge (because I struggle to walk, some days I can't go anywhere others I can manage a shop or two and so I do because there has to be joy and shopping in life Wink). When I am returning to my car parked in the disabled space though the temptation to exaggerate my limp a tiny bit is sooooo hard to not give in to. I am fairly sure people are judging me like crazy so having the temerity to stand up when you have a wheel chair. I can hear the intakes of breath from here.

MiscellaneousAssortment · 26/01/2015 14:40

Fuck yes.

I too find myself 'performing my disability' to signpost how people must see me. I fuckjng hate it.

And Schrodingers cripple - I love it! (And hate it...)

Deftly phrased.

PetulaGordino · 26/01/2015 14:41

what a powerful post - applauding here too

TheFairyCaravan · 26/01/2015 14:44

This is a reflection on my experiences too. It's bloody awful that this is happening countrywide.

I've had hatecrime in the form of a firework thrown at my bedroom open window, been called a cripple by the girls from the local Grammar school. I've been harassed by neighbours, reported to the DWP by the same person 3 times in 1 year!

It's horrendous.

PetulaGordino · 26/01/2015 14:49

we might as well do away with tests and scans and experts, given that there are so many people who are skilled at on-the-spot diagnoses despite no training whatsoever Hmm

hatchypomagain · 26/01/2015 14:58

I have two deaf children, who speak and listen like hearing children. We often feel that we have to prove the limitations of their hearing.

HesterShaw · 26/01/2015 15:16

What has society become, that it stands and self righteously judges whether it "trusts" whether someone is disabled enough or not?

PausingFlatly · 26/01/2015 15:25

I recently had to turn down an invitation to something I really wanted to go to.

I found myself spending hours honing a three-paragraph email explaining exactly why I couldn't make it. Covering all the solutions I'd attempted and demonstrating why each didn't work.

Because even though I was the one losing out, I was afraid a simple, "Sorry, can't attend" would reap:
"You're just not trying"
"Make the effort, you can't just sit at home"
"You just need a bit of encouragement to motivate you"
"You're hiding behind being ill"
and all the rest.

I think my quality of life has been so low, that some people can't bear to face up to that - so they pretend I'm pretending. That I'm only like this "because you're happy like this." The alternative is too awful for them to contemplate.

WhereDoAllTheCalculatorsGo · 26/01/2015 15:27

Thank you from me too. I am another wheelchair user who can walk about ten metres only. I often get 'the looks' when I get out of my chair and load it into the boot of my car.
My employer is currently trying to stop me from using my chair in my office. Apparently someone has complained that I shouldn't be allowed to use it as I'm not properly disabled (ie paralysed, I assume).

TinklyLittleLaugh · 26/01/2015 15:35

Because you see by opting to use your wheelchair you are "giving in".Hmm. It is apparently much more worthy to hobble about in pain and exhaustion than sit in relative comfort and actually have the energy to enjoy your day.

And don't even think about getting a scooter. They are all used by fake disabled people and people who are simply old or fat, and so should jolly well be walking.

janestheone · 26/01/2015 15:35

not in the same league, but I do understand, since breaking my leg rather badly nearly a year ago. I can walk now, with a limp, and have taken to using a stick, because then people notice, and sometimes give me their seat on public transport. If I didn't use the stick you'd hardly notice, and then it wouldn't really count, would it?

TinklyLittleLaugh · 26/01/2015 15:36

Really excellent post, by the way.

BoffinMum · 26/01/2015 15:38

My Blue Badge is up for renewal and I am slightly panicking about the process and considering not bothering to apply even though it means some days I will avoid going anywhere in case of being stranded in pain a long way from the car.

I am also avoiding filling in my son's PIP form because of the ATOS assessment he is likely to be forced to have, with some locum semi-medic ticking off inappropriate questions for his condition on a computer screen.

Both make me feel immensely stressed. I HATE performing my disability. It is most distressing.
Dawndonnaagain · 26/01/2015 15:40

DD had learnt this lesson by 16. She is now 18. Sad.

rumbleinthrjungle · 26/01/2015 15:40

Another intermittent wheelchair user here, and I've had the 'look' many times too when I get out of my chair or scooter. Try and explain why some days you can walk the dog fine on your feet and other days standing up is an issue, and you can see the fuses blowing. I suggested to a colleague a while back who was struggling with an arthritic hip that she borrowed a wheelchair so she could enjoy a trip around a museum that would need several hours on her feet- something I've done many times and without the chair would not have been able to access the place at all. She said in horror straight to my face, "I've got some pride left!"

Very acute, well written piece.

squizita · 26/01/2015 15:41

I call it "tiny tim" mentality. Ie angelic with a crutch!

I have a relatively mild invisible condition which causes skin flare ups, extreme back pain and pregnancy issues.
Even given its mildness, I am surprised people expect me to dress a certain way (ie less fashionable. sick people don't shop at top shop) and query me using a stick sometimes not other times (oh yeah when I actually feel good I should act ill to make it easier). When I was pregnant the double standards were appalling - like I should "want" morning sickness, adhere to every quack food rule going and act sick ... bit at the same time not ask for actual practical help like a place to inject meds or sit and monitor movement.

It infuriated me.

CommanderShepard · 26/01/2015 15:44

My next door neighbour has a blue badge and a motability vehicle though can't drive herself so her son keeps the car. When I first met her the first thing she told me was exactly how she used the car and the badge and that she never abused it, alongside a very in depth description of her disability. I hate that she felt the need to, although having now lived next to her for 7 years I absolutely understand why. Our society behaves appallingly.

squizita · 26/01/2015 15:44

Disclaimer (in case of misunderstanding) ... my 1st sentence is about people who judge those with invisible disabilities or conditions. Obviously not about those of us who live with them.

Sorry have had people confuse me describing things with me saying those things over the last few months on mumsnet. So clarifying.

TheFairyCaravan · 26/01/2015 15:49

We parked at Tesco once. I got out and started going towards the shop on my crutches,DH did something in the car and followed behind. A bloke came running up to him and started berating him for parking in a disabled space,so DH said "we have a Blue Badge, my wife is disabled, she got out first." The bloke said "I saw her, but she can't be disabled she's got make-up on!" Hmm

BoffinMum · 26/01/2015 16:02

That is BIZARRE!

AliceinWinterWonderland · 26/01/2015 16:23

Having an 8yo that sometimes needs his wheelchair and sometimes doesn't, I can really relate to this. The judgemental comments fly thick and fast. So horrible.

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