To say I have a disability - it does not make me inspirational it does not mean....(17 Posts)
That I'm going to run a marathon for charity or post an amazing blog detailing my brave fight in the face of adversity. It doesn't mean I'm going to do anything but get on with life, be a bit grumpy through a flare up, have a whinge that the NHS is woefully inadequate to cater to the needs of chronically unwell but not lifethreatingingly so people. It also means I'm going to get pissed off at people when they say "well so and so did X and they have [insert terminal illness of choice here] so what's your excuse to be so lazy"
I fully expect to be told I'm wrong
i agree with you. i feel the same.
nor am i amazing for having children with disabilities. as if they are some sort of mega burden that i deal with admirably.
it feels patronising.
might as well pat you on the head.
and yes, if you fail to rise to and maintain this sainthood where you triumph against all the odds with a beatific smile on your face - somehow you are a real disapointment.
it is somehow not ok to just - be ok. to struggle. you have to somehow be better than everyone else so they can feel pleased with how inspirational a fighter you are.
I have three chronic illnesses which have are at times disabling. I'm sitting here in absolute agony, and don't feel. Very inspirational. (I. Can't run a marathon either )
I feel exactly the same. Life goes on and just got to get on with it.
Fuck off all of you with all your dissing. I’m a special person who has the heart of a saint because only special parents get special children. And y’know, god only gives you what you can deal with. And me being a special and amazing parent can cope with Every. Thing. Ever. And be totally patient and loving.
Yeah. Fuck that. I frequently feel I have been given too much. I feel like I am drowning and losing myself some days. And if god is real and chose me to be this parent, he was drunk or taking the piss.
Deal with stuff in ways you want to. People trot out this inspirational bollocks because to say their real, knee jerk reaction - “thank god it isn’t me - thank you, thank you that I’m not in the 16% of adults/had one if the 6% of children”....well, that sounds s but heartless.
Fuck all of their expectations off. Do what you want. Cope how you like. And carry a lighter with you in case someone gives you that shitty Holland poem, then you can burn it right in front of them
burn it? i need a quilling tool so i can roll it really tight and shove it up their arse.
I got through one particularly bad year with DS fantasising about dropping the kids at school, driving off and never coming back. I had virtual packing lists and everything. In fact when I look back I'm amazed I didn't do it.
My parents were both disabled too. Funnily enough they were too busy scraping by on DLA and taking half an hour to do something an able bodied person could do in 5 minutes to run any fucking marathons.
Not that they could actually run. What with barely being asble to walk.
Yes. I have a chronic illness and have also recently had surgery and frankly I am on my arse. I was recently told about someone e who climbed Everest two months after surgery. Fucking brilliant. I'm two months post surgery and I can barely climb the stairs. I'm also in bed every night before 9pm, swilling down prescription painkillers, grouchily eating pretzel pieces, and wrapping wheat bags round my uncooperative joints.
I find the attitude towards people with disabilities being inspirational odd. I'm able bodied but no-one expects me to be able to run like Usain Bolt so why do people imagine those with disabilities are able to compare to elite disabled athletes?
Theres a difference between living with a disability and a terminal illness.
I am not amazing for getting my DD (2) to all her never ending appointments for her disabilities, I am just a mum getting on with what needs to be done.
No I cannot "just get myself in to debt" to sort my DDs conditions by going private, not if I want to keep a roof over our heads. I cannot just "ask family" and it's not really something I can fundraise for, so I do just have to wait and see, like I keep being told.
Sometimes makes me feel its about a self-reassurance that disabled people or parents of disabled kids don't need extra support etc. Cos they're superheroes of course. Makes benefit slashing etc so much more palatable. I can get pretty pissed off about it on a bad day tbh.
This may be a very unpopular view, but bear with me... As an aside, I am disabled, in a wheelchair, and looked after 24/7 by carers.
My niece is disabled. When she was 3, she lost one of her senses, and has gone on to develop mobility difficulties too, due to a potentially life-limiting condition. She is astonishing in the way she simply gets on with things, and there is certainly a place for telling her this, at times when she is really struggling, or when facing another painful operation or uncertain recovery.
However, the other way of looking at this is that, as tough as it is, this is now her reality. She doesn’t actually have any choice but to inject herself daily and take multiple medications, nor can she choose not to spend endless hours in hospital appointments, and be regularly subjected to urgent emergency admissions. At six, she is just starting to understand that not all children have to put up with what she does, and that some things are always going to be a bit harder for her than they would be for her friends .
But, as shit as it is - and it is - this is now the daily reality of her life. i am not convinced that repeatedly calling her ‘brave’ or ‘inspirational’ in her hearing helps? These things are not optional, just like toothbrushing, homework, and hair-washing are not. The sooner she sees these as the non-negotiable realities of daily life, the sooner, perhaps, she will develop the skills, strategies and resilience to cope with them. As she will have to do for the rest of her life.
That is not to say that I don’t admire her, and her parents, hugely - I think they are overwhelming in the way they have coped with this horrendous diagnosis. But, as someone also disabled, I am keen to show her that you just have to get on with it, and you can’t expect a bravery sticker or treat each time if it is your daily reality, as tough as that sounds. If it is normal for you, you have to come to see it as normal for you, even if it wouldn’t be for others, and then find ways to manage and make the most of what is left: learning that early on is important, i think.
I could well be totally wrong though. And just a mean old auntie!
I have a disability and have quite a technical job. The first year I started with my company they wanted to enter me for an award in the 'overcoming adversity' category. Luckily I was too old (it was for under 25's) so I had an excuse to decline but I really dislike this sort of thing. This also applies to women only categories and events.
I have a chronic illness/disability that can sometimes affect me severely. Some people have an odd view of the illness, I find. In one of my contract positions, I was told how inspirational I was to just keep going with things; by the fact I was still working, that I had children, and just carried on a normal daily life really. I was astonished. It had never occurred to me not to do those things. I just keep on with my life as I can.
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