Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Guest posts

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:
CuddlesAndShit · 28/01/2015 10:41

SO many posters I want to quote...

Flowers to you all. In a perfect world we shouldn't have to justify ourselves.

Miggsie · 28/01/2015 10:45

Just so you know... Atos are withdrawing from the health assessments for disabled people - the contract has been given to another company (whose name escapes me).
I assume they will be implementing the same government policies and process but it will be interesting to see if there will be any change.

CuddlesAndShit · 28/01/2015 11:13

I believe it's UNUM (could be mistaken though)

If so, don't get your hopes up. They provided the insurance for the company I was working for when I got ill and screwed me over royally.

They sent out an occupational nurse to assess me who lied and twisted everything I said. I appealed with a very strongly worded complaint and rebutted every single point she raised. They didn't want to know, it was shocking. Exactly like dealing with atos.

They even 'accidently' destroyed my wedding certificate.

I hope to god it's not them. I just do not understand why the government award these contracts to financial and insurance companies instead of medical (well actually I think we all know why...)

wonkylegs · 28/01/2015 11:16

I have RA which is fluctuating my biologics nurse once gave me the fab advice to always answer assessments as if it's my very worst day rather than how I feel the day it's done because Sod's law is that I'll be fine that day but immobile and in pain the next. The advice has stood me in good stead.
I was diagnosed at 19 and had some terrible years, I was repeatedly abused by old people on the bus for not giving up the assistance seats or using the accessible loos.
The very worst was when a wheelchair user tore into me when using an accessible wc in the theatre when I was with my son. She assumed that I had just used the loo as I had a kid with me not that I used it because I can't get up from a wc without support bars as I have completely knackered hips, knees & ankles. I walk fine over short distances but getting up and down is impossible.
I have grown a thick skin but yup I'm guilty of taking my sticks rather than explain because it's so much easier

PausingFlatly · 28/01/2015 11:28

UNUM are among the architects of the disability welfare restructuring.

See the 2001 Woodstock conference: "Malingering and Illness Deception"

Obviously, as an insurance company they have a vested interest - both in reducing state provision and running scare ads to get people to go private (they've actually done this on MN); and then in not paying out when the crunch comes.

That link's very readable, by the way, and extremely illuminating.

PausingFlatly · 28/01/2015 11:29

(But I don't think it's UNUM who've got the old ATOS contract - unless they're using a different name.)

TinklyLittleLaugh · 28/01/2015 11:52

With regard to my now well friend, I dunno; maybe seeing me reminds me of her dark days, or maybe she never really liked me that much and had to put up with me because there was no one else.Hmm

To be honest, I think she is just seizing life and trying to make up for ten years lost; I can't really blame her for that. And I do have other friends, who I am now seeing more of.

CuddlesAndShit · 28/01/2015 12:00

I think you are right Pausing, an advisor at the job centre told me it was UNUM but I have just had a very quick Google and it looks like it is an American company called Maximus. Who appear to be another financial company, with an even worse reputation than Atos.

The link I read said that the Medical Director (Professor Mike O'Donnell) was previously the Chief Medical Officer of Atos and UNUM before that. How convenient Hmm Nothing will change.

Mrsjayy · 28/01/2015 12:11

I had the pleasurse of an Atos assessment in December the assessment centre was a bit scary receptionist behind a double glass booth with an intercom the waiting area not private lots of posters about treating staff with respect an alarm. some poor sod in front of me had to explain loudly (cos the intercom was buzzing ) why they didn't have some letter lots of toing and froing bloody humiliating

Librarina · 28/01/2015 12:18

Thank you for writing this. And the subsequent posters for sharing their experiences. I have very little experience of knowing anyone with a disability but I do try to be helpful and polite in daily life. Despite this I fear I have been guilty of some of the thoughts mentioned but I have never said anything negative to anyone. I suspect that that is not enough so will try to check my internal responses and that remind myself that I don't know what anyone's story is. And actually it's none of my business.

VenusRising · 28/01/2015 13:06

This reply has been deleted

Message withdrawn at poster's request.

trice · 28/01/2015 13:21

On the Guardian website today

www.theguardian.com/uk-news/video/2015/jan/27/shoplifter-wheelchair-steal-food-coventry-marks-spencer-video

Not "Person steals food from a shop!" as that would not be newsworthy, more "Person dares stand up from their wheelchair!".

deniasha · 28/01/2015 14:52

I couldn't agree more!. I have severe COPD and a host of other health problems but it's not immediately obvious what's wrong with me. I'm going on oxygen very shortly, which at only 39 I'm really not happy about but the only positive I can find is that it's immediately obvious so might stop this kinda problem!. Living with a disease is hard enough without having to justify your existence and life style every single day. Dxx

rumbleinthrjungle · 28/01/2015 18:33

Thank you for that link, Flatley Bloody terrifying. How very naughty I am for giving into my chronic pain, dizziness and exhaustion and indulging myself in a 'sick role'. I'm self employed as while well qualified, previously in a well paid and successful career and often able to work part time, and would never therefore pass an ATOS test, my sickness absences of days where I could not function at all came too frequently to be tolerated (I'm talking about days when I physically couldn't get dressed, or upstairs, or fainted if I stood up) plus again naughty me, they're unpredictable. I never know how I'm going to be one day to the next, so I'm virtually unemployable. As while the right hand of our government insists every ill and disabled person can and should work, the left hand says that sickness absence at work must not be tolerated.

Add that to another thread running today about medication and driving which I read and my heart sank, as to me that is another probably unintentional blow against the disabled and chronically ill: if you're on long term medication, especially for chronic pain, you now have to worry about whether or not you can keep driving, or choose between your pain and being able to get to work. Standing for long periods, walking to bus stops, over train station bridges, getting cold, the shaking around in a bus or train which messes with my blood pressure to the point I pass out, the journey time - that would make me too ill to function before I arrived on site to start the day. So that's yet another barrier to work.

Frankly I'm getting to the point where I'll vote for a party offering a voluntary euthanasia option as an escape route from all this. I am 40, and I'm utterly terrified of the next 30 plus years I have to figure out surviving. I didn't ask for this. I didn't plan for this. The worst I can wish the people making these policies is that their eyes be opened by personal experience.

PausingFlatly · 28/01/2015 20:00

Thanks rumble.

And Thanks anyone else scared of the DWP/ATOS/Maxiumus tests: while they do get it wrong far too often, they also get it right a lot of the time.

So if you can't work because of illness, and you need the income, please DO feel you can apply. The process is no fun, but I'd hate for anyone to be put off something they needed and were entitled to because of others' bad experiences.

Jules718 · 28/01/2015 22:21

UGH. I know the feeling. I'm mildly autistic, and people automatically assume that because I'm nice and have friends that "I'm faking for attention." Or, they "Know a friend of a friend who knows someone with autism" and if I don't act like that, I must not be autistic because, of course, all autistic people are the same. JKELDBLSFBRNHEJFRBESFHJKRFBRJKSHZVN BFJZV

Jules718 · 28/01/2015 22:22

Or, you know, because I care about my appearance and look cute, I can't POSSIBLY have autism.

rachel19784 · 30/01/2015 17:47

I have people looking at me when I am wearing make - up saying I look fine. My sons best friends mum even told her son that there is nothing wrong with me and that I am faking it, I wish I was. Why do people have to involve a child! He cannot really want a mum who can not do everything either. Great post x

MiscellaneousAssortment · 30/01/2015 18:57

When on my scooter no one looks at me as an actual person, rather than a moving stereotype but when either getting off it or walking up to it and starting to take the cover off/ settle self down, well, that's a different matter!

I don't know if it's worse when people do a double take, or when they don't. I catch myself emphasizing my crip ness or pulling a 'that was an effort' face, or my 'flash of pain' face... I hate myself for doing it, but I have to try and mitigate the looks sonehow, protect myself.

BeyondDoesBootcamp · 31/01/2015 08:07

I had a good example yesterday. I shaved dhs hair and some of the parents at nursery were joking about bits being missed. He said, its not my fault, shes disabled, she did the best she could. And a parent said "her hands arent disabled". As i'm sat there in a wrist brace...

houghtonk76 · 31/01/2015 08:23

I can relate to this (a little) because not only am I 7 months pregnant and a non-driver (therefore, shock-horror, likely to use a bus while also having a buggy in approx 2 months), but I also have a long-term health condition that is unseen which I have had since age 6 (now 38 - that is, its not going away anytime soon). Because my disability is unseen, it is very difficult for others who are well to understand that I don't always feel great (like a car engine with no fuel), in particular because I carry on regardless by (double shock-horror): working full-time, generally being able-bodied and active, being the main bread-winner for over a decade while hubby was a TA & primary education student, being organised about my gp and blood test appointments, not claiming benefits - never have, even DLA which technically I am entitled to despite working full-time, etc., etc...so because I choose not to give up, become depressed and wallow in it all, I am somehow regarded as a superwoman who never needs any help by employers, colleagues, hubby, family, friends, etc. thus making a rod for my own back and all because there is no "badge", shining beacon, alarm, wheelchair etc. when you have an unseen disability and are therefore deemed able-bodied, or 'normal' if you will by society. Never has this reaction been more more apparent during my two periods of pregnancy since Oct/Nov 2013 (I lost my first at 7 weeks in Jan 2014) as I remember the people that seemed aghast by my baby on board badge in early Jan 2014 during long tube & train rides as I (mostly) stood up for my 4 hour daily commute into / out of London Paddington - clearly I didn't "look" either disabled or pregnant, despite the fact I was desperately worried I was losing the baby at that point - as well as those who casually allowed me to be the only person standing one morning last week when I had to get the bus to work (my new job since March 2014, which is luckily 20/25 mins travel from home - I normally get a lift with a colleague), despite the fact that while I didn't "look" disabled, I certainly must have "looked" 7 months pregnant. Eventually 10 mins in someone got off the bus so I got a seat, which all leaves me wondering: would an "unseen disability" transport for london style badge help and what will happen when a person with a wheelchair conplains about my buggy taking up space on the bus? If I say, well I would walk but I have a disability will they think I'm taking the piss??...

houghtonk76 · 31/01/2015 08:29

Love this post!!

houghtonk76 · 31/01/2015 08:32

Sorry, that was directed at the because I'm cute I can't have autism post, not my own (don't love myself) :-)

houghtonk76 · 31/01/2015 08:59

I get some weird looks if I ever use disability access loos in public places too, for a long time I felt really guilty (even though I only go in them if the standard ones aren't free), but nowadays I just think well I'm pregnant and disabled, I need the loo more than you know! My health condition is an autoimmune disease that affects my: hair, skin, nails, blood pressure, heart health, metabolism, fertility, mental health (sonething called Brainstorm could result in bi-polar or depression, my mother has the same illness and was diagnosed with bi-polar in 2006), immune system (meaning I always catch every cold going, so employers think I'm ill way too often), energy levels, concentration, adrenal glands, and digestive system (which gives me dire constipation on occasion, especially now I'm pregnant - when I'm not constantly weeing & considering investing in some tena lady, I am in serious pain from being backed-up), I also get water retention in my joints, have had thread veins & flebitis in my legs since I was about 12 and can get achy knees & ankles since 5 years or so ago. My feet & hands also get very cold and almost blue very quickly in cold weather and had such bad periods as a teenager and early adult, I would pass out or turn anactual shade of green. So if I nip in a disabled loo, please don't judge me, I honestly am not taking the piss!

sanquhar · 31/01/2015 09:15

i totally agree. im not disabled but have fibromyalgia. i frequently over act my tiredness because unless im groaning and puffing about people think im fine and want me to do stuff, especially DH!
if we have a morning walk on the beach with the kids i can manage that ok, but if im not groaning and panting by the time we get back to the car he'll ask if i fancy mowing the lawn or something when we get homeHmm do i fuck! sooo, every step upstairs is accompanied by a puffing groan, trying to open a jar is done with an agonised 'nnnnnngggggg!!' walking from one room to the next is a groaning shuffle.

i hate putting the act on but if i don't people forget and start expecting the impossible from me.

Swipe left for the next trending thread