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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:
BeggarsCantBeChoosers · 27/01/2015 19:36

Another MSer here. Only I look petite, slim and 'normal' with an 18 month old in a pushchair, but what people don't know is that the pushchair is my zimmer and without it I have to work really hard to walk straight. Without it I look a bit drunk if I talk while mobilising or fall to the side easily, especially in right spaces where my brain can't process well.

I only use my blue badge when my legs are buckling and I know I don't have long to be on them that day, so have to cut short extra car park distance to save myself.

But I am so conscious that no one can see my leg buckle unless I fall, and no one can see my arm is weak and numb because I use the ok arm predominantly to push, and I am a master (after all these years) at using walls, pushchairs and other props to steady myself without appearing to, iyswim. No one has given me a hard time over it but I bet they must think it Sad

I also dread the day my DC are embarrassed by their Mum parking in the disabled zone of their school see them. In fact, some parents deliberately park in disabled slots at school and we often get letter from the head teacher asking people to stop. I am sure it looks like I am being lazy, especially as I park on the road and walk up the hill like everyone else sometimes!

I wish my body turned a bright shade of green when I am unwell so everyone can clearly see!

BeggarsCantBeChoosers · 27/01/2015 19:38

Thanks for the thread though, it's nice to know I'm not alone Thanks

Gruntbaby · 27/01/2015 19:50

Good post and thread.

I have spent almost 4 of the last 5.5 years on crutches/ in a wheelchair, due to hypermobility syndrome complicated by SPD in 2 pregnancies. Thanks to the fact that each period of wheelchair use came in just under the 2 year mark, I was not able to get a blue badge because my area doesn't do temporary badges. If the general public could see how hard it is to get a blue badge they wouldn't judge so quickly.

It was an obvious disability - not that it stopped people knocking me to the ground by knocking my crutches - where people stared and made comments, a lot (a heavily pregnant woman on crutches is apparently either pitiful or amusing), and others seemed disapproving that a disabled person would have children Shock.

Funnily enough my physio actually told me to keep using the crutches some time after I could manage without them because otherwise I'd find it very hard to get a seat on a bench, bus etc, which would cause me a lot of pain.

My baby has a hidden disability in that his airway collapses and he goes into respiratory distress and you would not believe the number of people, including those who should know better, who have told me 'oh he looks fine', 'there's nothing wrong with him' etc.

MiscellaneousAssortment · 27/01/2015 19:57

This kind of stuff doesn't help :(

wheelchair shoplifter

Mrsjayy · 27/01/2015 19:59

beggars your children won't be embarrassed by you lovey don't upset yourself over thatFlowers

Greenrememberedhills · 27/01/2015 20:21

You are not wrong. My DH was treated very rudely by a bus driver on one occasion some years ago because he ran for the bus, despite having a disabled bus pass.

The bus driver tried to insist that he didn't look very disabled, and DH had to point out that driving and medicine were different qualifications.

patghosty · 27/01/2015 20:32

I always point out it say, 'Disabled' on the badge...not dead!

savemefromrickets · 27/01/2015 21:16

I read this before going out shopping today for the first time after a double mastectomy & recon. I know I can't walk far without getting wobbly and knackered so we parked in the 'disabled and less able' section and even then I felt like a fraud walking to the front door to borrow a wheelchair.

I did enjoy having a 'miracle' moment when I got out of the chair to stroke a Kitchenaid Mixer. The looks made me laugh but if it happened day in / day out I would soon be pissed off.

Nobody challenged me which DP was quite relieved about as I'd threatened to show my scars if needs be.

NormaPadro2 · 28/01/2015 01:12

I'm disabled. I have asthma and blood pressure now. I have been developing a few health issues now. I can't tell you how people behave when you tell them that you're disabled. They walk away like if you have some disease or something. My disability is not seen by anyone unless anyone sees me using my inhaler. I use to feel embarrassed to use my spray, because people looked at me like I was a drug addict then one day I said forget this. I am going to use my medicine anywhere. I can't be going to the bathroom to use it. It's not normal. I had to lie to my employers about my asthma just to get that job. It was dangerous, because I had to put that I was healthy in the applications. I also lied when I couldn't go to work, because I was having that fatigue episode we all know so well. On top of that getting that fatigue syndrome is not good. When I was employed I use to go to the bathroom to use my inhaler. It was my dirty little secret. One day I got a terrible asthma attack got intubated and I had to stop working. It was a hard pill to swallow since I'm very independent, but when you can't breathe well everything is a burden. Chest pains are not easy too.

AlreadyWearPurple · 28/01/2015 02:28

My illness is invisible and I use my wheelchair sometimes for various reasons. I can't sit upright for long and chairs in restaurants are usually uncomfortable - my staying power would be about 5 minutes. Also, the chairs often have gaps at the base of the back, just where I need to stuff a cushion (ie. it would fall out). Also, I need to be cushioned underneath. I do sometimes try to zoom in on Google maps to see what sort chairs they have but this isn't really very reliable. The easiest way to solve the problems is to use my wheelchair in restaurants as I have it well organised for being just right and comfy for me. I know it looks daft, getting out of a taxi, bumping my wheelchair over the doorstep, then sitting in the wheelchair at the table. I rarely go to restaurants but when I do, people look surprised and puzzled and don't really believe me when I try to explain.

Solasum · 28/01/2015 08:33

This thread has really opened my eyes (as MN so often does). Thank you OP

Mrsjayy · 28/01/2015 09:08

I got some weird looks wandering about a zoo in the summer getting in and out my wheelchair at 1 point I got out and pushed it up a hill some woman tutted

DealForTheKids · 28/01/2015 09:43

Thank you for writing this, it clearly (sadly) rings true for many of us.

My DDad has MS and admittedly now more obviously disabled as its quite far progressed Primary Progressive. He is also rather overweight being as he is wheelchair bound. You'd think it would stop such comments but no.. We were once wheeling past a pub when some fuckhead oik went "look, that bloke's so fat he has to have a wheelchair!"

Awful day Angry

My (very fit) 30 year old DH has epilepsy so can't drive. Twice now we have had horrid comments from train conductors when he uses his Disabled Railcard.

Mrsjayy · 28/01/2015 09:46

Your poor dad why do people think it is ok to open their mouths and spout rubbish.

TinklyLittleLaugh · 28/01/2015 09:47

Ah yes, we went on an alegedly wheelchair friendly, woodland walk in the summer. I'd love to know what sort of wheelchair they trialled it with because it must've been more like a landrover. But basically every time the terrain got too bad I had to get out and walk. And then we came to a very steep, very rocky bit and I completely bottled it. DH helped me walk down then jumped in the wheelchair and absolutely gunned it down the slope to "show me how it is done".Hmm

DS and I were standing at the bottom laughing our heads off at DH's daredevil antics and he skipped out of the wheelchair grinning.

But all the passing hikers were terribly po faced. We presumably committed some terrible faux pas of disability etiquette.

Mrsjayy · 28/01/2015 09:53

Oh yeah the actually having a bit of fun isn't allowed its offensive didn't you know that Grin

CuddlesAndShit · 28/01/2015 10:06

Flowers for starting this thread.
Ï
Not really much I can add that hasn't already been said. I have ME and Crohn's and from the moment I wake up I just want to cry from the pain and exhaustion. But I have learnt to act the other way - I have discovered that people seem sceptical or dismissive if I am admit I am struggling. Sadly that includes family and friends. When I put on my happy and chatty persona they are nice to me again.

It's really beginning to make me resent my mum the most tbh. When she asks how I am, dh told me to stop saying everything was fine and to be honest so I tried. She actually acts pissed off with me if I say I feel a bit under the weather that day! Dh is totally baffled with her attitude. So now I am back to 'smiley happy everything is hunky dory' to everyone because it's just easier than dealing with their attitudes towards me if I show any vunerability.

I think when you have a long term chronic condition people don't want to hear about it or deal with the 'burden' of it. It's easier to give sympathy to somebody with a heavy cold because they know there is an end to it. They can pat themselves on the back for being compassionate and caring as it's only for a short time.

It's ironic as before I was ill I was there for everybody through thick and thin. I have always been upbeat, silly and outgoing and I honestly never ever moan. But when I needed help all you could see was tumbleweed. Even friends who 'understand' still ask me for favours like having their kids when they know I am unwell.
Since being ill my faith in human nature has taken a real battering.

CuddlesAndShit · 28/01/2015 10:08

That was just like therapy Grin feel much better for getting that off my chest!

TinklyLittleLaugh · 28/01/2015 10:15

Hmm I have a friend who really suffered from ME for many years, I was less disabled than I am now, and I was really there for her, went round to see her a lot when she couldn't get out etc.

Happily, she is now pretty much better. Meanwhile, my mobility has deteriorated quite a lot. I don't see her so much now. I feel she is definitely moving on, making lots of new friends. I'm a bit miffed to be honest.

BeyondDoesBootcamp · 28/01/2015 10:17

Yy to everything here, weird looks for having fun and people being, well almost stroppy, if you admit you're not feeling your best.

Mrsjayy · 28/01/2015 10:27

A bit miffed id be extremely pissed off but I supoose you know what she is like. I was brought up to be independent I don't blame my family or anything but sometimes I think the expectations of me were to high and if I struggled felt like I was letting people down took me a long while tp get over that.

PausingFlatly · 28/01/2015 10:27

Oh god yes, wheelchairs and slopes. You have to be seriously fit to get a manual up a slope unaided, so it's almost always easier to get out and use it as a walker up a ramp.

The looks!

IAmNotAPrincessIAmAKahleesi · 28/01/2015 10:28

Such a fantastic post and one I can really relate to, though I wish none of us could

I find for me the worst culprits for this are the other parents (mostly mums) at my children's schools, sometimes the teachers will be really kind and reserve me a space for my wheelchair at events or make sure I have a chair if I'm on crutches, and the levels of vitriol and resentment this creates is astounding Sad the children can all grasp that somedays my legs are 'good' and I don't need my wheelchair and other days they are 'bad' and I do, but the parents always assume I am faking and trying to get special treatment

I think people (even my lovely friends)also forget that if they are seeing me at all it is automatically one of my good days, because most days I can't even get out of bed. So yes I might look 'well' and ok and not in too much pain but that's the reason I am out at all! They don't see me bedbound and crying in agony in the three days that follow my 'good' day

CuddlesAndShit · 28/01/2015 10:29

Tinkly I'm sorry about your friend. It's happened so many times, I'm sadly coming to the conclusion that most people are completely self absorbed.

"...almost stroppy, if you admit you're not feeling your best"
YES! Why do they do it??

rachelreallife · 28/01/2015 10:37

I pretty much could have written the same response as TheDoctorSandshoesAndGrandad

I am another with an invisible fluctuating condition. Some days I can do the school run without my stick, albeit is painfully and slowly, other days I can't. On the days I don't take my stick I do hear huffs as people storm past me and find I frequently look behind me so I can step aside if someone needs to get by. I don't seem to have the same problem if I take my stick with me.

I find myself 'performing' the exaggerated walk, particularly if we are near my car (which I have through Motability and have a Blue Badge for and my husband drives as I can't). What people don't see is that from Monday to Friday all I can do is the school runs; the wall that takes my husband (and other non-disabled people) 5 minutes each way takes me 20 minutes and exhausts me. They don't see that one afternoon out with my family can take me a couple of days to recover from. They don't see that I have to turn down invitations if I have something else planned the day before.

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