Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

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:
lbezzeg · 01/02/2015 19:31

You are disabled if you have fibromyalgia, it is a matter of the extent to which you are. Fibromyalgia is a horrid disease, the fatigue alone is enough to disable.

I feel everyone's pain, anger, humiliation, understand totally. I have had fibromyalgia for 30 years now. That diagnosis made me ignore muscle and joint pain that as it turns out was worse from lack of oxygen from a lung problem, so now I also have heart disease to boot from thinking oh, it's just another fibro flare.

So now I get to look disabled from having to pull around a cart with an oxygen machine.

MedusaIsHavingaBadHairday · 01/02/2015 23:01

I have episodic ataxia type 2. I can be absolutely fine one day, and staggering, slurred the next..can last for a few hours or hideously, weeks, and the exhaustion that goes with it is the worst bit.

But I look normal..(until the balance goes). Doing too much or a simple cold virus can bring on an attack. But I drive a little sports car (automatic cos I can't hold a clutch as my left side is weaker from attacks) and you should see the looks I get when I pull into a disabled parking space with my badge. The glares until they see my walking stick, have to be seen to be believed!

It irritates me so much. I shouldn't need a 'symbol' of disability just to prevent being glared (or worse sworn) at.

My DS2 is disabled.. autism, learning disability and physical disabilities for which he has to wear leg splints. But unless he is in shorts you can't see why he has a blue badge...and you can imagine the looks a 17 yr old lad gets when we park up.... people have NO idea :(

robyn66 · 05/02/2015 01:57

Thank you so much for posting this I felt like such a fraud for doing the same things you talk about

rubiocello · 06/02/2015 11:45

I am only too aware of judgy looks - nearly always from older people I have to say and usually in the blue badge bays - whilst flattering to think that I look to young - I am 48! - to be disabled it is still very annoying. I walk with a stick permanently and slowly - had a chair but in my very rural area was of limited use. And yes -when I got out of it some people clearly thought i was a scrounger. If I don't use the stick I veer all over the place as if I was drunk ( I have ataxia) and that gets even more looks.... partic if I am fuelling the car........
I have a Motability car but feel I always have to justify it and point out that it isnt free. And I live in fear of it being taken away if the DWP suddenly decide I'm miraculously fine. As a single Mum of three with a tiny income this would be a disaster.

Bethany22 · 06/02/2015 15:23

I have been reading this thread for awhile and I comply agree about being judged for having invisible disabilities, I have asthma, duanes syndrome, sjrojens syndrome, scoliosis of the spine, Klippel–Feil syndrome and dyspraxia. Because of these conditions I have arthritis in my ankles, knees, hips, hands and wrists I am in pain everyday and struggle to move around because of my vision problems I am legally incapable of driving and suffer anxiety attacks and when I meet someone new they always say you don't look/sound or act disabled because I don't use a wheelchair or crutches. I am 20 years old and I have come to tearms with the fact I am going to get cancer at some point and lose what mobility I do have before I hit sixty. I get verbal abuse from people when I am having a bad day and having a meltdown or sensory overload the way this country treats disabled people is discusting and the fact that it is allowed and considered normal is even worse. Sorry about the rant but I feel better getting it off my chest.

BoffinMum · 07/02/2015 09:39

Because of this thread I have been encouraged to renew my Blue Badge, I have written to my consultant asking for his support, and I have put on the Blue Badge form that I consider being required to 'perform' my disability inappropriate in my situation as a) it is variable, and b) I have a permanent and very well-documented condition and have had a Blue Badge since 2009, so there's nothing new.

If they make me go like last time and hobble dramatically up and down a corridor I will co-operate but make a big point of sarcastically asking if the Strictly Judging panel is there or something, and whether I will get points for style etc.

The more I think about it, the more I think these stupid pseudo-tests need to go, in the case of people who clearly have had something wrong with them for years and who spend half their lives in ruddy clinics. Ironically I am quite bad at the moment so it won't be hard for someone to see what's wrong with me, but I SHOULDN'T HAVE TO PERFORM.

amyd33 · 07/02/2015 18:22

So true. It used to get to me when i was younger. Now i just respond with "take a picture it lasts longer" im not proving my disability to ANYONE. xx

New posts on this thread. Refresh page
Swipe left for the next trending thread