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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:
saintlyjimjams · 26/01/2015 21:03

Love that guard.

My son is severely autistic, with severe learning disabilities (non-verbal, with severe challenging behaviours, requires 24 hour 1:1 care, and currently needs 2:1 to go out) and qualifies (easily - unfortunately) for higher rate mobility. Yet the number of people who think we're on the fiddle with a "free" car because he can walk. I just tell them I'd happily swap.

meandjulio · 26/01/2015 21:05

"What you won't see"

i'd like to see the team that produced the 'This Girl Can' advert make another advert with THAT slogan.

You see my husband walking around, talking to people, seeming completely normal. Obviously he is fit for life, work, everything.
What you won't see is what happens at home afterwards.

ColdCottage · 26/01/2015 21:30

My DSis had ME at school. It effected her most in the mornings in her Lowe back meaning she could get out of bed for a while after waking. So she was late into school. She kept up her good grades and didn't get any sympathy from friends, yet a few years later another school friend also had ME which meant she had to use a wheel chair at school at times. She had lots of sympathy and kindness my DSis didn't as people could "see" her disability.
Unfortunately people are not always very educated or open minded, plus the media doesn't help things at times with a certain demographic.
Having recently been physically impaired for 1/2 year I have a more rounded personal awareness of this.

WineWineWine · 26/01/2015 21:48

But why do you have a white cane when you can see obviously see me?
Why don't you just wear glasses? Or laser surgery? I couldn't see a thing before I had mine....

I am well used to performing my disability.

MrsCs · 26/01/2015 21:53

That's awful :( I have no disability but I have a general awareness of disabilities, hidden or otherwise. I've often seen people get out of their car and lift out a wheelchair, never thought anything of it. How horrible that some people would comment or be cruel. I imagine carrying a wheelchair around and being in one must be a significant inconvenience, why would anyone do it if they didn't need to?

TinklyLittleLaugh · 26/01/2015 21:57

Thing is, it's not bloody rocket science is it. I went with DS(then 6) and his mates and their mums to a theme park and took my scooter. The little boys were all, "Oooh Tinkly, why have you got that?" (The mums were cringing).

I just said, "Well you know I'm a bit wobbly? Well if I have to walk around all day, I get really wobbly and tired and achey".

And the little boys were all, "Well yeah, that's a really good idea then isn't it?; you'll have much more fun". And no more was said. So if kids can grasp the concept, why do so many people struggle with it?

thewheelmantdd · 26/01/2015 22:06

I am wheelchair user I deal with it.
but its the other peoples attitudes I can not deal with slagging you down and stuff that makes me feel sick

some days I feel I would be better off DEAD
????

babybarrister · 26/01/2015 22:12

This reply has been deleted

Message withdrawn at poster's request.

BlessedAndGr8fulNoInLaws4Xmas · 26/01/2015 22:21

Totally agree I have fibromyalgia - people just don't have any compassion at all... I'm in pain all the time, exhausted and my quality of life is so affected - yet because I have no bandages , crutches etc etc my suffering goes acknowledged and support is minimal.

18yearstooold · 27/01/2015 00:10

I've been accused of faking my MS by colleagues because the stick I use isn't an nhs one and I've also done race for life last year

Apparently I can be fit and active when it suits me

I wish!

What they don't seem to understand is it is a remitting relapsing disease, I had to cancel our holiday last year and spent all but 2 hours of Christmas Day 2013 in bed -so it's hardly when it suits me

I've actually been well for the last 4 months but I know another episode is on its way because I can feel the familiar buzzing in my feet

I'm dreading it, not only because I know I will be in pain and each time I relapse I wonder if this is the time it won't get better, but because of the looks and comments I know I will get

senvet · 27/01/2015 00:16

I am usually a wheelchair user as I can move a lot quicker and use the handles to carry stuff. I can do up to 100 metres on crutches if I don't mind being unable to move the next day.

But last year I got damage at the base of my spine, so on the rare occasions I was out I walked with crutches.

The weird thing is that cars always stop to let the wheelchair cross over the road at corners, even when they have the right of way. But staggering with crutches didn't have the same effect at all.

So, back in the wheelchair, I saw a lady who had just had a hip operation staggering uncertainly on two sticks, trying to cross the road.

'Stay with me, I'll see you across' and like magic the cars stopped, I slowed my wheelchair to a twentieth of its usual speed and got her safely across.

She and I are equally perplexed.

My friend gets asked why she has a blue badge when she can walk. 'It hurts!' she says and shows them the 12 inch scar on her leg and the ones on her neck....

Mrsjayy · 27/01/2015 09:15

I have no words really you said it all as a disabled person who can walk but uses a wheelchair occasionally the looks you get are astounding when you gdt out tut. Infact being disabled going about your day to day bussiness can be exhausting and not just physically , urm it seems I had loads of words Grin

Mrsjayy · 27/01/2015 09:20

I have had people say to my face after slagging other people disabilities lifestyles well of cpurse there are genuine people like you well thanks for the approval.

GraysAnalogy · 27/01/2015 09:29

Excellent post.

CFSKate · 27/01/2015 10:46

Great thread.

cookie1985 · 27/01/2015 10:55

I am 29, i was diagnosed with MS at the age of 21, I live in pain every day, I have had 5 years of chemotherapy in the past 8 years, thankfully I am rarely a wheelchair user at the moment but whether I am in my chair, using my crutches or in need of assistance from my partner / family I have a disability but because of my age I am often judged when I park using my blue badge. Check out my page and the videos m.facebook.com/invisibleillnesses2014

quirkychick · 27/01/2015 12:00

Totally appropriate post! My dd is 5 with ds and we are being referred to wheelchair services as she can't walk far. Also agree about DWP, we are currently appealing our reduced mobility allowance. Sigh...

It seems it's ok for permanent wheelchair users, but not those who need it sometimes. In dd's case, she rarely walks more than 50m, if at all. She lives in her buggy. Our next fight will be school, who don't want buggies inside as they have new carpet. I would much rather she could walk to school, run, jump etc.

JaneAHersey · 27/01/2015 12:21

This Coalition Government have been condemned by Amnesty for it's attack on people with disabilities. Hate crime in on the increase because of how the government are stigmatising people with disabilities, who live in poverty, who happen to be single mothers etc.

www.mirror.co.uk/news/uk-news/212000-people-beaten-up-being-4186370 This is just the tip of the iceberg as Coalition government implement their policies of hate and the right wing media don't have the intelligence to give a balanced approach to what is happening in society.

The skewed political ideology of this government means they consider any person who is disabled, ill or poor as a degenerate and society has paid enough to such people so now they can fend for themselves. This isn't a new ideology it is based on Eugenics and Conservatism. Hopefully people will bear this in mind as we head towards the next General Election.

Mrsjayy · 27/01/2015 12:25

I bought my wheelchair a few years ago because I was going to be sent for assessment somewhere I really didn't want to go through the can you walk 5 metres unaided sort of questions im to long in the tooth for that

Iloveonionchutney · 27/01/2015 12:36

I once met a man with ms (my mum has it too and is wheelchair bound), this gent wore track suits as it's more comfortable and could walk but was wobbly, the abuse he got from people saying he must be drunk of he couldn't walk straight and obviously wasn't disabled if he was in a track suit cos he must have been exercising!
I have Crohn's disease and an associated arthritis, I'm almost completely incontinent so going out is a challenge. You can imagine the looks a woman in her 30's with a 4yr old child gets for using the disabled toilet!

ninetynineonehundred · 27/01/2015 12:53

Thank you for this post. I know nothing about disability so this and all the comments have taught me a lot.

MrsVamos · 27/01/2015 13:32

Great posts from all.

Love and admiration from me to all.

Disability isn't always visible.

TeWiSavesTheDay · 27/01/2015 14:12

Good posts.

I was thinking this morning after my DS with partial hearing loss got teased by older children for acting oddly - that as well as teaching our children about being considerate of the disabilities they know people have we need to teach them that they need to consider the ones they don't know about.

No my son doesn't wear a hearing aid at the moment, yes his speech is getting much better. He still can't hear properly though.

BeyondDoesBootcamp · 27/01/2015 17:11

Perfectly worded post, Lucy
Flowers

Sincerely,

Beyond (non-paralysed, practically full time, wheelchair user)

soxer123 · 27/01/2015 18:51

I've had similar. you can't see cancer and despite having mine cut out, the recovery was a lot longer than the surgery ordeal. My second ATOS WCA earned me sweet FA in the points rankings because I had no discernable illness or descriptors as they call them.

Personally, I would like to punch IDS in the face until even his own mother wouldn't recognise him and then I'd start on his attack dog McVile.

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