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Guest post: I'm fed up of having to perform my disability

LucyBLucyB Member Posts: 13 Listener
edited November 2016 in Guest blogs

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.

To play along or not?

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.

Disability hate crime

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.

The rules

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?

This article was first published in Mumsnet.

Click here to read more disability-related guest posts.


  • shellyimpystimpyshellyimpystimpy Member Posts: 1 Listener
    I have had fybromyalgia for many years, I don't 'look' disabled. I have been refused PIPS as I have 'no musculoskeletal abnormality'. Sometimes I have energy in short bursts, I am always in moderate to  severe pain. I have chosen not to inform my employers as I know that whatever equal opps policy people have, someone with chronic fatigue is not viewed as a wise recruitment.I am fat, exercise is difficult to impossible. People including disabled people do not view my condition as a 'proper' impairment. I have considered using a mobility scooter am loathed to be seen as a fraud when can walk.
  • LucyBLucyB Member Posts: 13 Listener
    I'm really sorry you've had such rotten experiences. You can appeal that PIP decision as that's not enough basis.

    I think there's definitely an unwitting hierarchy regarding disability where those not in the know view things like FM as just a niggle. The more we open up the conversation about hidden disabilities the sooner awareness about these conditions can spread.

    Have you felt the need to alter your behaviour in order to be believed or to avoid being stigmatised?
  • lavellelavelle Member Posts: 1
    I found your piece absolutely thought provoking and unfortunately true for those with soo many different conditions. I have Bi-Polar and though this is largely a 'hidden' illness, I to find my self wondering if I merit the help I sometimes (be it rarely) get. People have such an archaic idea of what my condition should look like that I find myself just giving in a little bit more, just so that I can validate what I feel on the inside, with what everyone think it should look like on the outside.

    In truth, I am generally at my worse when I'm quite and isolated.  Only those near to me can see this, but everyone else just walks on by, often surprise when it comes out that I have a mental health condition. I remember the build up to the characters breakdown on shows such as Eastenders and thinking, whilst 'some' of the internal dialogue is passable as genuine, the rest generally is not. Media has created a format that people with mental health conditions must follow to be genuine, where anything outside of this is weakness, lies, or not recognized. Its this complete lack of identity in society that conversely makes me worse, because I do not walk around the community in my pants, I don't drown myself in alcohol, and those at a distance do not even see it at all, just a tired man. In truth I am silent because I am at my worse, I am dieing inside, and its in this silence that I truly detach and leave everyone behind. 

    Thank you for writing such an apt piece, its only with the sharing of these ideas, and breaking down the incorrect social norms, that will we have more help, faster, and therefore a better quality of life where we can be people, rather than scripted caricatures.
  • Eze4ScopeEze4Scope Member Posts: 2
    Thanks Lucy for saying it as it is.  I had a car accident 6 years ago and my experience of disability since has lead to me not wanting to go out in public very much.  I was lucky enough to join a fantastic company last year, who are very understanding of my limited mobility, bouts of depression, living and working day to day in pain and the difficulties of living with these conditions.  I was receiving disability until two years ago when I had an assessment and they declared that I was no longer entitled to disability benefits.  My husband wanted me to fight it because there are additional costs involved in getting around in life with disability, but I just couldn't stand the fact that I had to justify myself so we live on a very tight budget and suck up the costs of getting me to work when I'm unable to drive myself.  I don't know what we do about the perception of disability as human nature these days appears to be every man for himself (or herself) and the politics of envy.  Why they would envy people who have so little and live in constant pain and the fear of getting worse, I just do not know.  I have Sky TV, but then I no longer can afford or feel able to go to the theatre, or the cinema or just down the pub.  Its all too difficult and I can't sit still long enough.  What should I do stare at the wall when I'm not working?  All the organizations involved in disability are so under pressure I don't think they have the chance to tell the many stories about really living with disability and what is the best forum, TV only wants to see "scroungers" or stories that can be "pitied" - what about more positive role models - not olympic stars, but those that manage to live a life, often helping others and doing the best we can?  Oh no, that's not as interesting as pelting people in the proverbial stocks on the JK show or the latest Benefits show on Channel 5!  I'm just scared because on top of those conditions, I had a chest infection for two months which has gone, but I've been left feeling completely exhausted the docs are saying it could be chronic fatigue.  Apart from working, I won't be able to cope with anything else.  Well that's alright then, because I shouldn't be doing anything enjoyable in my spare time anyway.  Keep up the good work of raising these issues Lucy.  All, the best x
  • Eze4ScopeEze4Scope Member Posts: 2
    Great to see Scope are addressing the lack of stories about disability - just ranted above and then saw this article tweeted!

  • LucyBLucyB Member Posts: 13 Listener
    Hi Lavelle,
    I'm in the middle of writing something at the moment about the stigma attached to mental illness. I suffer from co-morbid physical and mental health conditions and one thing I can be certain of is that the chances of anyone dressing up for Halloween and calling it a "chronic illness rehabilitation centre patient" costume are slim to none. Similarly, I've not seen a horror film about chronically physically ill people taking over the general medical unit. There is a particularly damaging stigma perpetuated by fiction media in particular which casts people with mental illness as dangerous. On top of that there are all the same stigmas that refer to physical conditions. Have you noticed how many people use "depression" or "bad back" (with air quotes inclusive) as a shorthand way to suggest that someone is faking it? It's no wonder so many people find it difficult to reach out for help.
  • megmeg Member Posts: 1
    Loved your blog. My daughter Megan has cerebral palsy and is mobile - however she tired really easily. We use her wheelchair (which was a battle in itself to get) to get her to places to conserve her energy so she can enjoy herself when she gets there. Walking causes her a lot of pain but she wants to keep up with her peer group - as any 7 year old would.
    When she gets out of her chair you can see the raised eyebrows and looks of 'not entitled' to park in a disabled bay.
    She met a famous author last year and when she got out of her chair he exclaimed "Oh it's like Little Britain!"
  • nurseGladysnurseGladys Member Posts: 2 Listener
    edited February 2015
    Thank you for being so open about how you feel. I cannot understand why people feel the need to question a persons "abilities". I managed a shopping trip spaced out on painkillers and walking with a stick. 4 people asked my daughter if she was parked in the right place, despite my blue badge, because my grandsons car seat was in the back of her car! And of course, no one believes me because I have a "bad back". Fellow sufferers can understand that pain can be incredibly tiring and most painkillers cause drowsiness so it can be a vicious circle. Sometimes I want to scream, other times I just want to cry. I have lost count of the times I have been asked if the badge is mine when I need to go out but my shoulder is too sore to use my stick. And I can't do a thing once I get home for at least a couple,of hours. A few years after the accident, surgery was considered but the decision was made not to proceed as " I could end up in a wheelchair". Some times I wished I did use a wheelchair not because it would be easier( because it wouldn't as sitting makes things much worse) but because I thought people would believe there was genuinely something wrong with me!!
    Where did all the nice, thoughtful kind people go?
  • LucyBLucyB Member Posts: 13 Listener
    Hi Eze4Scope,

    Thank you. I'm sorry you've had such a tough time. My son was debating at school yesterday (he's only 8) and he took the left wing side of the debate. The girl arguing for the other side declared "My mum says poor people are only poor because they're lazy and can't be bothered to work". My son turned and whispered to his teacher "But we're poor and my daddy works." This perfectly exemplified for me how far reaching propaganda regarding those living on restricted budgets has become. There seems to be no thought at all for those who work long and hard (often whilst facing disabilities) only to not have this come through in their pay packets at the end of the month. But what better way to justify cuts disproportionately harming people with disabilities?

    It alarms me how readily we gobble up the idea of this ultra deviant underclass, faking disabilities to steal from the tax payer. These programmes are nothing but an exercise in divide and rule and yet so many people readily accept them as fact, and never even stop to question how someone would be in that position. I can only hope that more disabled people be given a platform to speak out against these representations, so that we might challenge the lie.

    Great link by the way- I have a son who is disabled so we'll be following closely. Best wishes for the future.
  • LucyBLucyB Member Posts: 13 Listener
    Oh Meg, how demoralising. I was chatting to people the other day who were laying a lot of the blame for current stigma on Little Britain. Did you feel able to say something?
  • LucyBLucyB Member Posts: 13 Listener
    Hi nurseGladys,
    Isn't horrible how people don't consider that what they can't see might possibly exist? Confession time: Once upon a time I saw a young, attractive healthy woman walking to her car which was in a disabled parking space. "Here's another one," me and my mum thought. No sooner had she climbed into the car then she had pulled an oxygen mask over her mouth and nose. We ended up chatting for ten minutes, she had CF and wasn't able to walk far or go for long without her oxygen. She told me that every time she got out of her car at least one person would make a cruel comment. When I think of how bear I came to being one of those people it fills me with shame.

    Chatting to fellow Twitter users, it seems that disabled people can be some of the worst for making these assumptions. When we share experiences such as yours I like to think the chances are we've changed at least one mind for the better. I hope you find away to cope with the presumptions- I know it can be hard though.
  • bendy_boliverbendy_boliver Member Posts: 2
    Excellent blog post Lucy, i've been sharing it to lots of people I know.

    I'm young and most of the time my disability is invisible and I get so worried about how people view me, it causes a lot of anxiety. I have a blue badge now (I somehow managed to get PIP, think it was a combo of getting my MP on the case with delays and 's guides) and I often have older people tutting at me when I get out of the car. I'm due to be seen by the wheelchair clinic soon, I wish there were other aids I could use to make my life easier but crutches etc increase the chances of more dislocations (I have EDS). I think some sort of aid would also make me look more "legit" as although I am able to park closer to places I have more anxiety about people judging me for looking healthy. Maybe a wheelchair will help this side of things too, but as you said in your blog post, people don't expect wheelchair users to be able to stand. I feel like I have to make sure I don't get out the car too quickly, or walk too fast etc, even though I already know I am much slower than people my parents age. I also feel guilty when I rarely go out to the cinema etc because claiming benefits has such a stigma attached to it, so I feel like i'm not meant to enjoy stuff or have a life. 

  • LucyBLucyB Member Posts: 13 Listener
    edited February 2015
    Bendy_boliver I do think the wheelchair can be a good visual signifier for "I'm sick", though obviously, as I've said, it's in no way perfect. The notion of what a disabled person looks like is so narrow and I think people get it into their heads that the only disability healthy looking young people in wheelchairs might have is paralysis. Only old people are allowed to use a wheelchair as a temporary mobility aid.

    Did you see the picture George Takei shared on his Facebook wall last year? It pictured a woman standing up from her wheelchair to reach a bottle of alcohol with the text insinuating she was pulling a fast one. She committed the two sins you refer to- a wheelchair sans paralysis and she was buying something considered non-compulsory. That activists such as Takei feel entirely comfortable sharing such vilifying images speaks volumes about the public perception of the matter.

    Have you ever felt the need to make loud comments to signify to bystanders that you have a disability?
  • bendy_boliverbendy_boliver Member Posts: 2
    That Takei post made me so so angry, i'd seen the photo and caption on reddit before and been disgusted then, but Takei has a very wide audience. It popped up a few times on my facebook timeline when people shared it, they were promptly not my friends anymore. I think he issued an apology but the damage was done. 

    Why do people think they have the right to judge me if i'm visibly disabled and buying alcohol? Maybe they are worried about alcohol interfering with any medications i'm on /s
  • LucyBLucyB Member Posts: 13 Listener
    Me too Bendy_Boliver, he definitely went down in my eyes. I remember him defending it but don't think I saw an apology.

    This is the thing- once you're identified as having a disability there seems to be a socially enforced belief that you give up the right to privacy, so all of our choices become open to public scrutiny.
  • JoydcraftJoydcraft Member Posts: 1
    edited February 2015
    Well done Lucy, you have eloquently said what many disabled people would find hard to put into words. You have managed to give a voice to the thoughts that go through the minds of the many of us, who feel the stares and questioning glances when we park our cars in disabled spaces, showing our blue badges. But then we get out of our cars go to the boot and manage unaided to lift out our wheelchairs, mobility scooters and rollators. We know they are thinking ' they can't be that disabled if they can do that' little do they realise that it is very painful, and sometimes all but impossible to do, but if we actually want to get anywhere we have to make the effort, despite the pain and additional problems this gives us. I have really exacerbated the pain I get in my shoulders by having to lift my rollator out of the boot. I have recently purchased a new one that is 3 kilos lighter in the hope it will make it easier to manage. The days when we could easily get our motability cars fitted with hoists etc are well gone. If you want this kind of adaption NEED is no longer the criteria. You may have a legitimate claim, but you have to go around cap in hand applying to various charities asking them to grant you the money and as there is only so much money to go around, you are more than likely to be unlucky in your requests. So, we continue to do ourselves further harm heaving our wheelchairs etc out of the car, going red in the face with effort and embarrassment as we feel the disapproval of the lucky able-bodied.
  • LukeRoberts88LukeRoberts88 Member Posts: 1
    I'm currently being treated for an as of yet undiagnosed psychological disorder which manifests itself in mood swings, thought disorders, suicidal ideation and behaviour and psychoses. I work full time at a psychiatric hospital (currently in a unit treating patients with forensic histories, personality disorder and mild to moderate learning disability) and when I'm not 'a bit grumpy' I'm 'not safe to work with'.

    It is fascinating to observe the attitudes of so-called psychiatric professionals. I currently work with people diagnosed with paranoid schizophrenia, borderline personality disorder, early stage vascular dementia and Huntingtons. Daily, I am bemused to witness colleagues asking patients to crack a smile or cheer up, it listening to others make light of desperate claims of low mood when I can be often sat or stood close to them weighing up the pros and cons of self-termination. If my mood is particularly unpleasant, I'll do my job and simultaneously try to avoid my colleagues simply because I cannot hold a conversation with them without getting physical symptoms like head aches or pressured speech. I'm of course being moody and should lighten up. I can choose happiness. I can switch existential pining off just to tell them my opinion of the new lad. Just shake it off.

    Despite what goes on in my noggin, I believe I portray myself as capable and intelligent when I'm working. That's the trouble. I don't always feel capable. I wish I could sit and have lengthy conversations about telly with intermittent pauses. Even more so, I wish I could lie down for ten minutes in absolute silence, now and again because I am overstimulated, exasperated and confounded by my colleagues, my employers and more often than not...EVERYTHING ELSE.

    But, I can't do that because that would be quite mad. And I don't want people thinking I'm mad, do I?

    Lovely post, Lucy. Thank you. Xx
  • LucyBLucyB Member Posts: 13 Listener
    Joydcraft- isn't it funny how disabled people are always said to be seeking "special privileges" when all they're asking for is the right to be treated and have the same opportunities as abled people? Would it be called a "special privilege" if abled people thought they should be able to not only have a car but also the ability to get in and out of it? The way we need to fight for these basics can feel like giving someone stuck in the desert a glass of salt water- it looks like what we need but it's actually not fit for purpose. And then when that man has to drink that water (just as you have no choice but to lift your mobility aid out of the car) they can turn around and say that he has no right to complain about his thirst.

    I really hope things improve for you soon.
  • LucyBLucyB Member Posts: 13 Listener
    Luke- I've seen this too many times in mental health circles- from my own experiences and with close relatives. If only wishing were the same as doing- amazing that some people don't understand that if you could tell yourself to "cheer up" and it come true, you would.

    It's dangerous for your health though isn't it? Because you get in a situation where you have to perform your disability so that people treat you like a "regular" person, which then reduces your chances of receiving appropriate support when you need it. And then when you do become unwell there's the chance that someone will question why you didn't say something, completely oblivious to the fact that the work culture made that impossible for you.

    I hope things improve for you there. The stigma attached to mental health is long overdue an overhaul.
  • [Deleted User][Deleted User] Posts: 0 Pioneering

    I really loved your blog post.  You touch on so many important points, but there was one phrase you used in particular that really jumped out of the page for me: "Scrounger Narrative". 

    I work on the Scope Helpline, but I'm posting here as an individual rather than a mouthpiece for the organisation. 

    I take calls every day from disabled people about ALL KINDS of things.  They don't call when everything's going well, obviously.  And lots of our calls are benefits-related- or if they aren't, there's often a financial component to their issue or query.  What sinks my heart is that so many of the disabled people I have the pleasure of speaking to, feel compelled to reiterate to me that they'genuinely need' something, or that they've 'worked all their life', or that they've 'never asked for anything', or that they 'want to work, but just can't'. 

    Bad enough that we need to have a name for 'Scrounger Narrative'; bad enough that, as you say, the right-wing press has thrust upon us the impossible concept of "Schrödinger’s cripple" (brilliant analogy, by the way!) 
    - but above all, bad that this narrative has been absorbed by disabled people to the extent that when they contact us- an organisation championing their rights and dignity- they still feel the need to self-justify.  

     We (non-disabled) people, built a world that excludes. So we've a duty to undo, as much as we can, those barriers. This starts with a bit of PIP or DLA here and there, but it's not as simple as 'pay the difference' (though the difference is HUGE). Just as important is that we (disabled and non-disabled people) collectively reject the idea that there is any kind of moral yardstick for who 'deserves' and doesn't.  

    I saw in my facebook newsfeed last night, one of those "inspirational" picture/quote hybrids.  the quote was 'the only disability in life is a bad attitude' (YUK!)  Although I was angry, rather than get on my soapbox, I just posted a link to your blog post... and the person who posted the picture read it, and commented that your words had really made him think.  

    Please keep writing. 


  • LucyBLucyB Member Posts: 13 Listener
    Thanks so much for your comment Beth. I have to admit I've been guilty of that myself. I constantly feel the need to tell people I'm desperate to work. Last September I decided to attempt college- BIG mistake. It made me so ill. This week my social worker asked me what I'm going to do about volunteering. It knocked me back as she knows how ill I've been. Thankfully I had the courage to simply answer "recovering". However it struck me that this idea of worth measured by work has become so endemic in the system it's no wonder I'm constantly wary of having to prove myself.

    There's so much that goes on behind the scenes with disability that just isn't detectable from watching someone walk to their car, but the culture of suspicion around disability has turned us all (disabled and non-disabled) into armchair doctors, diagnosing people at a swift glance. I agree- we need to be taking a stance to call that out as the ridiculous notion that it is, because differentiating ourselves from it as "worthy" continues to give the narrative some credence.
  • RomanScholarRomanScholar Member Posts: 1
    Dear Lucy,

    I'm a sufferer of RP (retinitas pigmentosis) and I've been having a hell of a time because I now have to use a cane. I've been spat on, shoved, had rocks thrown at me, called all sorts of names, just to name some of the worst, but not including the little things like 'you're not /really/ blind, you don't need a cane' or 'you're a drain on society' even though I am a highly educated individual (I hold a PhD in Archaeology) and have never taken public funds. 

    Most of the people I meet just stare or point me out (I can still hear!), but I don't know how to handle the people who attack me. I can't call the police, what are they going to do - I rarely can see the people doing these things to me before they run away (I've got about 40-60% vision left, but lost all of my peripheral vision). Its very frustrating. I'm reticent to get a guide dog because I'm worried someone would hurt the dog and would only acerbate the issues.  A cane I can hide, collapse it up and blend in when I have to, but a dog I can't - its just there. The people I work with are generally good, and they are aware of what its like to have a blind person about, but as soon as I leave the university, all bets are off. A lot of time, I am scared to walk home because of the brutalization I've been experiencing recently, but not sure what to do. 

    I'm very frustrated, mostly because I don't think individuals think what they are doing is wrong. I'm sub-human, weak and fragile. What they don't know if that I've served in the military, travelled to most of the world, work out quite a bit and I take a lot of beatings from falling down, but I keep getting back up (until my knees quit working, that is!). I just want people to leave me alone, but they all seem to think their commentary is wanted.
  • LucyBLucyB Member Posts: 13 Listener
    RomanScholar- I'm so sorry for what you've experienced. It's relentless isn't it? This is the thing that shocks me when Joe Public makes the presumption that people are faking their disabilities. Why would anyone welcome such societal disdain? All they know of disability are the concepts of a welfare cheque and a free car. They are completely oblivious to the pain of such continuous abuse.

    It's terrible that it's come to the point where people are considering using or not using aids simply so they encounter less abuse- our society should be ashamed that this is what they've led us to.

    Last year I went for an interview with a work adviser at the job centre, she said to me, "I don't suppose you managed to get an education?" I've no idea why such presumptions are made. I find it incredibly frustrating that my achievements and individuality are erased so easily just because I have a disability. I suppose it's yet another indicator that society has this one size fits all view of disability.
  • Suzi ThomasSuzi Thomas Member Posts: 2
    Hi Lucy, thank you so much for posting this blog, goodness I wish I had your eloquence and your courage!! I've found myself in a similar position regarding wheelchair use but 'lost my nerve' a few years ago and now spend most of my time indoors, didn't reapply for a blue badge when my old one ran out and avoid people as much as possible basically because of the ill  feeling trickling down from the 'top' which continues to grow worse. I was no longer wanted as a volunteer for a local charity because the charity began using the government work programme. I had a horrible time at a Tribunal mostly due to the interrogation by the 'disability' representative, it has taken me years to come to terms with the demoralising effect, and felt my previous work history was irrelevant, the list goes on - I am constantly judged when I do come into contact with people either by what I can do or by what I can't do, particularly if "Benefit Scrounger" type headlines have been in the newspapers. The Welfare Reforms have hurt so many 'people, caused so much psychological damage not only to people with mental health problems but also damaged the pyschological health of people with physical disabilities. Rationally I know it  'shouldn't' be true, but part of me feels as though I should be wearing a bell or a sign declaring my disability. Thank goodness there are people like you, brave enough to put into words how others of us are feeling. Thank You!! XX
  • Grannia50Grannia50 Member Posts: 2
    I work full time, it is getting too much for me.  I had an option of benefits over 20 years ago, but chose to work, as I do believe it is important.  I now feel that I am being victimised because of this.  I cannot give up work, because I can't afford to, but everyday is a struggle.  I am on auto immune medications, anti depressants and pain killers.  I cannot take anti inflammatory med for my arthritis, or paracetamol, as the other medications have already caused me to have chronic kidney disease (not serious at the moment) and they also cause reduced liver function. I am constantly tired, to the point that I can fall asleep if not kept busy, I have even fallen asleep while writing.  Although I have these issues,  there is not one that is visible,  well my skin blisters could be, but I choose to keep them covered.  The general opinion appears to be that I am lazy, fat, and don't help myself.  Nothing could be further from the truth.  The help that I could make use of is only available during the day, when I work.  I am very aware that I do not look disabled in any way and I fully intend to keep it that way, I do have a blue badge, which causes many pointed comments that can be quite upsetting.  The sad fact is that many who claim disability are not disabled, and have never worked, the social stigma is caused by those who choose to use the system, and like it or not, those who have addictions, ie alcoholics and drug addicts receiving DLA as they come under disabled.   If I gave up my job due to health,  I would still have to go through the whole system by which time I could have lost my house as I would be unable to pay my mortgage.  What is the answer?  Is there an answer?
  • LucyBLucyB Member Posts: 13 Listener
    I think it's important that we don't repeat the government and right wing press fables about high fraud rates. By the government's own statistics this is less than a percentage point- not even 1 in 100 claimants is fraudulent. I think it's very dangerous when even disabled people start selling this idea because then we become pawns of a system designed to oppose us. I don't take umbridge with people with serious addictions receiving disability support (knowing a couple of people in this situation & how they got to that point and how it impacts on their daily lives) but I do believe there is not enough additional support to help them out of substance misuse.

    All that said, I am very sorry you find yourself in this position. I think most of us have heard the "fat, lazy" stereotype being banded around by people with no idea of how illness and medication can impact upon weight. This is the crux of the problem- there are too many people making decisions regarding disability based on ignorance and carefully edited tv shows and biased pieces in the right wing press.

    I would suggest it might worth your time speaking with a disability adviser. You can work some hours on benefits- though not full time, and as benefits are backdated you may be able to get a crisis loan from your council to cover you during the application/ assessment period. Good luck to you.
  • Donna DeerinDonna Deerin Member Posts: 1
    I feel exactly the same lucyB I had an accident 4.5yrs ago which has left me with 3torn discs at the bottom of my back, ostioperosis, complex regional pain syndrom and incontinence I rely on stair lift and crutches in the house but as im in cronic pain 24 / 7 and take 29pills a day aswell as 10sachets o laxido im allergict to any opiate based drug so the cronic pain management team had to say there are no more pain relief they can offer me ive tried and tested everything from morphine to ketamine but I take really bad reactions to them so I havevto rely on a wheelchair when outside but find when im in my manual on people speak to you as if you're a kid in a buggy I feel more confident when im in my electric one because people cant reach over u when ur in the supermarket I.e but sometimes I wish those people who ask you how r u today really new what was goin on behind the mask im 42yrs old and have a 19yr old daughter my hubby had to take early retirement to be my fulltime carer!!! When I read ur story it felt like I was reading my own life story xx
  • Jacky BarfootJacky Barfoot Member Posts: 1
    Your blog hit a chord with me - I have spinal stenosis, listhesis, arthritis, chronic pain, fibro and crps - it means i cannot walk far due to pain and spasticity and need regular sit downs and stand ups due to the spine, i alternative from a stick to crutches to a chair i borrow. The looks and comments I get are terrible and i have neighbours shouting get a job at me in public and in my own garden and lead swinger shouted at me. These days i ignore the comments but for 2 years it made me withdraw from society, now i pitty them for their ignorance and raise awareness.

  • RainRain Member Posts: 4 Listener
    hello and I am new to here I am thrilled to have found this wonderful place of safety and comfort and it's thanks to Lucy B blog
    I could so identify with it too
    I am so grateful to her for that because it needed to be said
  • Steve PagetSteve Paget Member Posts: 1
    Hello Lucy,
    You have got it about right. The reality for many living with impairment is at odds with the media portrayal of disabled people along with, the Government rhetoric that we all only need to look to the recent Paralympics to see what disabled people can achieve.
    We (disabled people) are left with the fallout. Austerity (basically cuts to all support), has been and, will undoubtedly continue to be the biggest, and some might say dangerous, con in our recent history. Ghandi once said that ...the true measure of a society can be measured in how it treats its most vulnerable members'. Taking that approach and, the fact an election is coming, I will let you and others decide who you might want to put into government this time around.
  • Suzi ThomasSuzi Thomas Member Posts: 2
    Hi again Lucy, I'm still astounded by how many of us are 'in hiding'.  I've already used your phrase about 'recovering' when it's pointed out how much 'rest' I take etc., with great success (I hope you don't - but it fits so well :))
    thank you so much for bringing this out into the open. I have mentioned your blog to a few more 'undercover sick and disabled'. Now that each of us knows we are not alone, what do you think is the best way to move forwards (pardon the pun), is there any alternative to hiding in our homes? I've noticed such an awful change in attitude over the past few years, undoing so much the disability organisations have done, that I fear things will take years to recover the ground 'lost' - and I don't really see how unless there is a huge change in the political system and general media.  Any ideas of how to 'brave' the everyday 'judgement' will be greatly appreciated. Best Wishes. XX
  • orangecounty59orangecounty59 Member Posts: 3

    Hello Everyone

    I have just found out in November i have Fibromyalgia and Osteoarthritis but im too terrified to claim PIP owing to a terrible experience claiming ESA i had to go through a Tribunal and it looks like this would happen again claiming PIP too stressful made me ill and the thought of it still does today how wrong is this suffering with this condition is bad enough has anyone else found themselves in this position .

  • debbyddebbyd Member Posts: 2
  • VickySVickyS Member Posts: 133 Listener
    Hi Debbyd,
    It sounds like you should talk to your GP as they could refer you to wheelchair services if that's appropriate for you but they may also be able to offer alternative solutions as well. 
    Vicky x 

  • Bex AdamsBex Adams Member Posts: 2

    Hi Lucy. Thank you for your blog! I found your story very interesting and familiar. I too have big problems walking and standing. I cannot walk very far at all, or stand for more than a matter of seconds before I'm in a huge amount of pain, discomfort, extreme exhaustion and experiencing high anxiety because I suffer from Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and damaged discs in my upper and lower spine, which causes a lot of widespread chronic pain, mobility issues, dizziness, chronic fatigue.... the list goes on. On top of that I suffer from Emotionally Unstable Personality Disorder, and High Functioning Autism, which causes moods to the extreme, plus high stress and anxiety levels, and depression. The combination being a massive challenge in itself! I am house-bound for more than half the week and bed-bound very often.

    I try not to use a wheel chair or scooter when possible as I want to remain feeling like I'm more able-bodied, (I'm 34 now). But I have to borrow the ones at supermarkets and higher the ones in town. I have had the experiences you mentioned to do with getting out of a wheel chair in public, and the neighbours causing problems as they don't get it, don't ask and only cause trouble. I expect many of us have that too. 

    My Ehlers-Danlos Syndrome is actually classed as an invisible disability! I was thinking of getting a print on a hoodie saying something along the lines of..... "Ask if you don't understand, I have Ehlers-Danlos Syndrome, so I'm not as fit as I look", or "Is it a miracle or a struggle".... and have a Zebra on it, as it is associated with the condition.

    I bought my first ever scooter last year, but there is a BIZARRE and SHOCKING thing that happened to me to make me decide I just have to get one!......

    I went to a festival with a disable access pass and one carer... (a friend). I had no problem accessing the disabled viewing platform to hear the acts on stage, but that's only because I carried my proof of disability on me and I managed to get an access card. But anyone in a wheel chair was turned away because they didn't have a pass! :-O I was shocked at this, and spoke to the woman turning people away. I was polite but blunt, she just told me "no pass - no disability"!! There was just no making her see sense!

    I walked up to one of the people turned away, the woman pushing her husband in the wheel chair was very angry, I told her I was shocked and asked if he had any proof, with that he took his bandanna off and showed me a BIG dent in his head!!

    Parents arriving with blind children, and wheelchair bound children were asked for their access passes, IT WAS DISGRACEFUL, APPALLING, and UNBELIEVABLE!!!!!

    At one point I saw a young man in a wheel chair on the grass below, I walked up to his mother and asked if they knew the platform was for disabled people, she had no idea and though it was for people who paid more! I told her if they followed me, I would say they were with me, so we did and they got in!..............

  • Bex AdamsBex Adams Member Posts: 2
    edited September 2015
    ............. Well that wasn't the only thing!.... When I first arrived on the viewing platform and all the seats were taken up by disabled people AND their carers! I asked the lady if she could ask an able-bodied person to give up their seat, and she said she can't, I will have to wait! (that sounds like a first come first served basis to me)!.... My anxiety and pain got worse and worse. I perched myself uncomfortably on the scaffolding bars at the back. I asked if she could get another member of staff to get a seat from another area having seen some just 300 metres away, and she said no, that wasn't possible. I had to wait for a member of staff to get one from a place where they have a few extra.

    My pain got so bad I when over to a man on the front of the platform with 2 empty seats next to him as asked kindly and respectfully if I could please have one of the seat if their was an able-bodied person coming back, to which he said, "No both my son and wife are sitting here" I asked him if they are both disabled and he said no, but the seats are taken"! I told him I really needed to sit down as I'm disabled and in a lot of pain standing, but it was still no use. I told him disabled people have priority which he should know as he's disabled, and went to perch back on the bar I lent against.... 20 mins later (in a LOAD more pain, very anxious, and pretty pissed off I was given a seat).

    The whole disability access was very poor! There weren't many seats on the platform compared to place allowing for seats!!

    Another thing was there wasn't anyone stopping able-bodied people using the disabled toilet right next to the disabled viewing platform on the first day. Disabled people had to wait in line for the queue to die down before being able to use there own toilet. Before the end of the day, it was too full to use, me and many other disabled people had to walk or wheel themselves a lot further away to queue in a busy toilet area and wait for the toilet like everyone else. AND the staff at the ticket gate right at the beginning of my experience were making wheelchair users and their carers go to the back of the queue! I rescued someone from that too!

    Because of this terrible experience I bought a self-folding scooter. I only use it for long days out! I really didn't want to have to get one as I didn't want to give into my disability, as I feel it's important to keep using what I can, when I can! But the great thing about having one is I only walking a lot less, being on my feet a lot less, and... I NOW HAVE A SEAT WHEREVER I GO!!!  ;-)

    I have written to the Victorious Festival in Portsmouth, and Disability UK Rights. I'm now waiting to hear back.


    I would to offer you something Lucy. I run a pain management group on facebook which you would probably find very useful! Of course anyone else on this comments list is more than welcome to join too.

    This group is to support people in pain. There are some helpful links and important information!  I created this pain group after attending a NHS hospital pain group run by a pain psychologist. I wanted to pass on some things I've learnt and stay in touch with some of the hospital pain group, so some of the members in this group are the original members of the hospital pain management group. We all found it really good to be able to communicate with other pain suffers, as we all know what it is like to live with daily pain, and how it can restrict our lives.  So who better to talk to than each other? :-)

    Let me know if I can help you out in anyway with the issues of physical and/or mental health. I'm always happy to help others in their journey.

    Here is a link to documentary which has only just been on TV to help people understand Ehlers-Danlos Syndrome and the secondary conditions it causes, (I have many of). You'll only need to watch 20mins of it. The Professor in this is who diagnosed me! (A very well sought after a rheumatologist) -

    Thanks for reading me extra long comment. If you would like to read my EDS story, please click on this link -

    I hope you join our facebook pain group.

    Take care.

    Bex Adams, from Surrey, UK.
  • Crystal PackardCrystal Packard Member Posts: 1
    yes. fibro and degenerated and herniated discs. Use a cane sometimes. Can not stand or walk very long most times. Almost constant daily pain .  On disability for anxiety/panic attacks.  good article.
  • Neil MathesonNeil Matheson Member Posts: 1
    LucyB -

    Just saw your blog post about the need to "perform your disability". Your comment about being an Olympic medal winner (good!) versus a disabled single parent etc (bad!!) definitely struck a chord with me.

    I am a dad to a six year-old boy and I'm also disabled with cerebral palsy. Also, my wife passed way 19 months ago. For the last 8 months or so I have been battling the BC Liberal gov't re: Social Assistance clawbacks. They just recently stopped the clawback of child support $ for divorced single parents ... but so far have done nothing for *WIDOWED* single parents like myself with inherited CPP Death Benefit monies. Every single month, all 100% of my Death Benefit gets clawed back. Simply because I am on Social Assistance, my dead wife has zero significance & value. Extremely frustrating ... extremely stupid ... and extremely prejudice :(

    LucyB, you are quite right that Disability Discrimination is alive and well indeed...

    Btw, my own website and blog is @

  • goodilangoodilan Member Posts: 1


    Someone just sent me a copy of your article and I have to sincerely thank you. This is the first time I have ever seen this problem address in any form. I've felt the same things a hundred times, but never been able to articulate them so well.

    As you’ve said, it seems that we constantly have to put on a show. I once had someone assume I was cured simply because I was walking a little straighter, as opposed to that I was simply having a good day. On the other hand, some people assumed that because it was only a cane, I must be fine. Asking someone to move on the bus might have been asking them to give up their firstborn. Then, once I went in the chair, I felt like I had to act like what everyone expected a cripple to act like, down to adopting a Dickensonian accent.
    There is also a mental side to this act. It seems like as a cripple, you have to be somehow “inspiring”. I feel like I always have to be peppy and optimistic.  I’m not allowed to have a bad day or to think something I have to do really sucks.  You never want to be one of those “downer” sick people that no one wants to be around.

    Thank you again for a fabulous article.

  • [Deleted User][Deleted User] Member Posts: 0
    Hello to all.  Just read Lucy's blog and was impressed with just the title.  A very strong statement indeed, but profound as well, and well put. I have RA, legally blind, severe diabetic neuropathy in my feet, a herniated disc, spinal stinosis, and a myriad of other problems. And use a power wheel chair..   I will say this, it is a very good thing to have the advocates we have via the internet.  My son, had all the same things I have but to a much more severe degree than I, and passed away Feb 16 this year, at the age of 50 from complications or all his diseases. A link to see what he accomplished and did can be seen at  Beautiful Soul: A Tribute to Brad Carlson - Relationships - Rheumatoid Arthritis
            It is so good to see others doing so much positive work and help, it just makes my heart sing, knowing Brad wasn't the only one. I also would gladly chat/email with others, anytime.   Ray_G          
  • Char24Char24 Member Posts: 1
    What an amazing page I've stumbled across. I've loved reading everyone's comments and personal experiences. It's actually given me a sense of relief knowing I can read other peoples comments and know I'm not alone. Your blog was brilliant Lucy and it couldn't have been more accurate. I've recently been diagnosed with having a severe case of RA and have not long turned 24. My career was within a huge entertainments company and I am a professionally trained dancer. I was forced to give up my job, dream and career because of this awful illness. I am now stuck in a rut, and have no idea where to go next in life. I have a few family members who suffer with the same condition but not to the extent of my own. I have always lived an active, fast paced life. Doing mini marathons, charity runs, and taking part in triathlons etc. and now my life has slowed down massively, to the point where I rarely get invited out by friends anymore. They don't really understand the condition and I'm not sure they want to as I get the feeling they think it's all for attention. There are other family members who don't think it's necessary that i am currently getting ESA and awaiting on a PIP claim also. This is tremendously hurtful when most of the time they don't hesitate to voice their thoughts or opinions. So I constantly feel under pressure to prove I am physically Ill, even though I have regular tests that all prove I am anyway.
    After facing many problems in my job, I went to be professionally seen where I was given a few tests and it was determined that I had RA in most of my joints, including my jaw. I found out half way through my contract that i had this disability, i tried my best to stay in work, and carried on performing in shows because I didn't want to be the 'moaner' or the 'lazy one'. My colleagues were all super fit dancers and my manager was a very ignorant man. No one understood my disability, not even me. Under pressure to still be normal, I ignored my doctors orders and carried on working, despite the chronic pain I was in. It became increasingly difficult to even raise my arms, never mind follow fast paced dance choreography for a full hour of a show! Eventually I had to leave, crippled with pain and my joints beginning to crack with further exercise. Devastated is an understatement. I have only been out of work for 5 months and have already had numerous members of my family and even friends asking why I haven't looked into finding another job yet. There will be one day where I am not bent over in agony or walking abnormally and people will assume I'm 'cured' and I'm 'getting better'. It is increasingly frustrating having to explain myself to people especially when some of these people are family members or close friends that I've had for many years. Sometimes they don't understand when I have to cancel plans when they have seen me the previous day and I have looked completely fine.
    It is very difficult to explain the pain and the feelings you have.
    I have recently started having counselling along with all of my treatment, steroids, infusions and medication. So although I am still wanting to be in work, it will be very hard finding an employer who will understand my condition and be willing to take me on. I am not just looking for a job, I am wanting a different career path and it is so hard trying to find one that I am actually physically capable of doing.
    I have good GCSE's but have only got a diploma and a degree in dance and performance. So I feel as though I am starting back at square one in trying to find another career.
    It is such a downer on your confidence and self esteem.
    My partner is amazing, he helps me through everything and on bad days he even helps me get dressed and does my hair for me. He is a god send. I have only been with him 2 and a half years though so I feel as though this is a lot to put on him. Sometimes I feel like he doesn't fully understand the condition either, although he does help me and is a great support with everything else. I do feel isolated and stupid on days when I get upset or down for no apparent reason. I feel stupid for not being able to explain why exactly I am upset. And I feel even more stupid when I am upset for the same reasons I was upset about over a fortnight ago. It's a vicious circle and I very often feel alone.
    So thank you so much for writing this blog Lucy, reading everyone else's comments has certainly lifted a dark cloud that has been hanging over my head for the last few months. Having your life change so dramatically and having people judge you because they cannot see the illness that has stopped you from working, driving and being as sociable as you once were is horrible. It's so awful having a disability that cannot be seen because of having disbelievers trying to prove their points, when Infact, their points are just vicious opinions that they should keep to themselves. No one can see the amount of pain you are in when you try your hardest to hide it. You don't want to be a burden to people so when asked if you are doing okay, you simply say 'yes' because you don't want to drone on saying the same old things and bringing them down.
    Thank you for writing this, so people like me who are newly diagnosed can come across this page and feel so much better just after reading a few posts. Feeling lost and confused is such a horrible feeling. So Thank you Lucy.

    -Charlotte x
  • Ruthy_RaRuthy_Ra Member Posts: 2
    What a fantastic artical.  I have M.E. and use a Blue Badge.  When i park and get out i get the looks.  A bit like you i decise weather to jump out of te car as nimbly as i am able or get out like a "doddery older person" just to justify my use of the space.  
    I dont use a chair but do use a mobility scooter so of course i am unable to use that if i am on my own in the car so just have to use my badge to park close to where i need to be.
    I had a "funny" event whilst i dared to go to my local pub.  Parked my wheels outside(due to steps) and went in for a pint(for once i had a eve with no kids).  When i came out i overheard someone say "theres that woman that can walk but uses that!".  I had heard the giggling from the same group as i went in but i ignored it.  But this loud comment got me!   I went over and asked if they knew why i used my wheels to which they said sorry we thought you were a scrounger!!!  So i got out my Blue badge and said that i would rather not have to use my wheels or my badge because i would rather be well.  I then left saying next time you see me in town pls say hi and my name is Ruth not "that woman".  Felt good but i was exhausted when i got home.
    Why do i have to prove why i use a mobility aide?

  • Barbara PierpontBarbara Pierpont Member Posts: 1
    What an excellent article. I felt revived after reading it. I was under the impression that my experiences were unique; I'm so glad (although saddened) that I'm not the only one. I have fought getting a wheel chair for exactly the reasons enumerated in the article. I need the wheelchair, but I can "pop out" for a short distance. People have looked at me like I was a fake.  I usually use a cane when trying to get from here to there, limiting my distances traveled. I have become an expert on judging distances from the car to the store, the size of the store, and the length of the total trip! Recently, I've simply stopped going out relying instead on family members to shop for me after a woman at the grocery remarked hotly that I didn't deserve to have a handicapped parking sticker because I could move with a cane.
  • smithfishesmithfishe Member Posts: 2

    I am a young looking 52 year old who has worked all her adult life (workaholic) I never even had time to have a family.  Suddenly became very ill a few years ago and was diagnosed with CFS/ME, through which after a relapse managed to get back to work with adaptations being that I could work flexi-time and from home on a Wednesday.  It worked well and I achieved with pacing all of my work objectives and got glowing reports and feedback from work colleagues.  They all accepted that whilst I didn't look ill they all knew about my condition and could see when I was beginning to get tired and I think because it was a flexible working environment to begin with and I always stayed cheerful and achieved all of my work goals and was a helpful productive member of the team is why they were so supportive.

    Unfortunately my department shut down and was relocated to London and I was put into a department where all my workplace adaptations were taken away, Occupational health became involved and wrote a statement saying that if the workplace adaptations were not put back in place that my condition would relapse but still they refused. My new boss told me on my first day in the department that she would never have accepted me into her department had she known that I had M.E and then when I complained about it she denied that she had said it.  She refused to acknowledge my months trial period which is allowed under my redundancy rights (I had been on redundancy notice when I was accepted into this department) Then commenced months of bullying.  She removed my workplace adaptations of flexible working from home on a Wednesday and refused to reinstate them even though an independent assessment by Occupational health informed her that if my work place adaptations were not reinstated that it is likely that I would suffer a relapse.  Consequently without the adaptations I relapsed and was signed off work as a result. After that things got worse, I was determined to get back to work despite the bullying and finally was just getting back to work when I was forced to attend a meeting, refused access to have an independent person with me.  During the meeting my Manager I felt that my manager was deliberately saying things to upset me and finally she put in place unreasonable restrictions for me in the workplace that no one else in the company would have to endure and as a result I broke down in tears and asked for the meeting to stop. I wasn't allowed to leave the room and when I did finally get out of the meeting I left the building and collapsed outside in the car park where an ambulance was called. I have a large lever file with evidence of the bullying including voice recordings of such meetings but unfortunately the law to protect disabled people in the workplace doesn't work.  I was and am too ill to ever have taken this case to court. 

    The bottom line is that the people in Government who make laws to protect the disabled are not disabled because if they were they would understand that if you are disabled (regardless of whether or not you look disabled) with a condition that is exasperated by stress then you have no hope of fighting for any of your rights. If you are healthy or your disability is not exasperated by stress then you can stand up for your rights so maybe they need to review these laws and educate companies more..

  • VickySVickyS Member Posts: 133 Listener
    Hi Smithfishe,

    I'm so sorry to hear about the bulling you've experienced from this new
    manager. It just goes to show the difference a good manager and the right
    adjustments can make to a working environment. Have you talked to the Equality
    Advisory Support Service? They can help with discrimination issues although I
    understand that taking this further would involve a lot of effort on your part
    as taking an employer to tribunal is not easy. It just seems like if you don’t
    get support to do this then they will get away with it and they will do it to
    other disabled staff members. Did you make a formal grievance against your new
    manager? Maybe you can go above her head?

    I hope this incident hasn't set your health back too much and that in time
    you can look for another job at a company that will appreciate you and your

    Vicky xx

  • smithfishesmithfishe Member Posts: 2

    Hi Vicky,

    No unfortunately this happened about four years ago and I am no longer able to work :(

  • [Deleted User][Deleted User] Member Posts: 0
    smithfishe.  I'm thinking you are in the
    UK. And not in the USA.  am I correct on that.?  As if you were in the USA. I know some folks involved in the ADA. (Americans with Disabilities Act.) that would just love to gobble up your case and spit your employer out in little bitty pieces and permanently fix all of those issues you had and see that the managers involved would be out on their, a#% if you know what I mean.  However I am not familiar with the UKs process and agencies.  I do hope things have been better for you since you left those awful folks that gave you the grief.   Just my 2 cents worth. 
  • Rosemarie O'LearyRosemarie O'Leary Member Posts: 1
    why do I feel guilty for being disabled when I only have ME/CFS, Fibromyalgia, IBS and depression when everything gets me down. I lost a great career 15 years ago.  It's been a long climb and there are times when I could really really use a wheel chair too! So I don't go out.  I am trying really hard to reinvent myself as a self employed artist.  Painting is therapeutic.  Without loads of support I can't do the arts and crafts fairs, deliver and pick up paintings to exhibitions or heaven forbid have too much work to do.  When my brain and body stop, nothing works.  Yet I want to scream sometimes when someone says to me "You look well!" I don't want to be the "Woe is me".  I've learnt that the more positive I can be the better I can manage.  Rant over.... my brain is slowing up :)
  • milomilo Member Posts: 165 Pioneering
    I've had to stop work a year or so ago due to health problems related to my CP. As a result, at the age of 40 I've found myself having to claim ESA and PIP for the first time in my life. At the same time I've made the transition to using a wheelchair permanently, although I can stand for short periods on my crutches even though I wobble like a weeble (for those old enough to remember weebles). I do get the odd comment when I get out of my adapted car to lift my chair out but find that my step daughter is usually quicker than me to say something witty in response. I often wonder about how my disability affects the kids and was shocked to discover recently that my step daughter, when asked to write about someone who inspired her for an English essay, had written about how I had adapted to life in a chair and that I didn't let people's negative opinion of disability get to me. I'm not often very emotional but reading that caused a fair bit of lip trembling. I guess what I want to say is that I'm not my disability, it doesn't define me and I try not worry of narrow minded people want to stereotype me. Those who are important to me know that there is more to me than being the bloke in the wheelchair.
  • Sarah KurowskiSarah Kurowski Member Posts: 1
    Hi, I found this very interesting, I am really struggling to continue working, I recently had a PIP assessment, broke my foot which hasn't healed I have struggled to walk since my altered gait has caused joint problems there no isn't a day I don't take prescribed painkillers I am always in pain. I have been like this for over 2 years. I can't walk or stand for long. I am asking for a reassessment on my medical I have mental health issues too and I am very isolated I don't go out I rely on my children to do caring tasks for. A physiotherapist preformed my assessment and didn't even consider my mental health- I need an adapted car and feel with this and other reasonable adjustments I would be able to work but it seems that the PIP assessment declines you support if you can do some level of work
  • mrbailey1970mrbailey1970 Member Posts: 1
    Hi everyone and LucyB, As I read your blog post I began to feel very grateful! You have voiced what I have been feeling my entire adult life. I am a Legally blind and hard of hearing person in Indiana. I have a disabled plaque in my vehicle and I drive LEGALLY with bioptic glasses. I carry a white cane to walk because without my driving glasses I can't see more than 5 feet in front of me and I haven't seen my feet in 10 years. Walking with the bioptics is difficult so I choose not to. I get people complaining to me constantly. Most comments I get are: "You don't look handicapped". My daughters think I should just ignore their ignorance but I chose to enlighten their minds or just plain baffle them. My responses are usually: "Good thing because I am disabled. I can do anything that you can do and sometimes better. Handicapped insinuates that I am incapable of doing something, which is not true." or I just say, "What does handicapped look like? You see, I am blind and I wouldn't know what that looks like." The last one usually stupefies them since they see me getting out of the drivers seat of my van. Anyway, I think some sort of education needs to be integrated in the schools, maybe in health or social studies classes, that explain that there are different degrees or levels of disability. Most disabled people can have perfectly normal lives. I didn't lose my eyesight until I was 30 years old and it was from a genetic disorder. My mother and grandfather also have it. I grew up not even knowing my grandfather was almost totally blind. He did everything around the house and my grandmother worked outside the home. My mother lost her vision while I was in high school and that is when we learned it was hereditary. So, I began preparing sort of. I knew the possibility was there. I was diagnosed at 25 and it was gradual until my 30's, then boom! I remember one week in particular, I love going outside in the Spring, I went outside and the grass was blue, the trees were blue, the sky was funny looking. I had to ask if something was going on with the weather. It wasn't. It was my color vision failing. Talk about freaking someone out. I am not total, I can still see but my acuity is horrible. I do not read the same anymore, I am totally audio (which gets expensive). I am now 44 years old and graduating from college in December. My hopes are to go to graduate school and become a Vision Rehabilitation Therapist. This is a person that assists the newly blind to adjust and function in society. I want to also provide some sort of group sessions so that no ones has to go through the changes alone. I did it alone for the most part. I had my husband who is great but he doesn't understand totally because he can still see. Unless you have been there you will never really know. As for the Don'ts in your list.. I do as much as I want. I have a wonderful family of 5 children and 3 grandchildren, I cook, clean, go to school, and have an opinion and mind. Just because we are disabled doesn't mean we need to hide away from everyone. I think it is just more of a reason to get out there and let people know we exist!
  • Adam MorganAdam Morgan Member Posts: 1 Listener

    I certainly know what it is like to have an invisible condition and the amount of abuse (Verbal only so far), filthy looks and comments that seem to come along with it.
    I consider myself lucky in one way but not in another, I have Cystic Fibrosis (CF), which is a condition that affects so many different areas from the lungs (making breathing difficult at times or making O2 a requirement), to digestive system, to requiring insulin (all the time or some of the time), to the liver and kidneys, to the eyes, to the bones, to arthritis and osteoporosis, to making us prone to chest infections (of which would knock many out and can be mild to life threatening), etc. Then there are the many different drugs, nebulisers, physio sessions and more to do, but you get used to it and just do it because the other choice is becoming more ill and possibly dying.
    When I say I have been lucky, what I mean is I wasn't affected by my condition hardly at all when I was young, except a few infections, then I went to university and my health decided to kick me up the backside (I was near 21 years old, much older than many manage or even survive too) and I started having to go into hospital for admissions lasting at least a week but more than often two weeks and at one point almost four weeks. I have had a few operations due to my condition, a peg for over night feeding (which I no longer do as this didn't help me) and a port-a-cath in order to save my veins from the constant stabbing for blood tests, cannulas and long lines.
    Unlucky in the fact that this is a life long condition with no cure and will only at best stabilise but ultimately deteriorate unless I new drug comes about to stabilise my condition.
    I do appreciate what I can do and feel for those that gain a condition later in life because at least I have never known what it is to have and lose my health, only to get worse health than before.

    Anyway, CF being a condition that is invisible means that because people can't see it, they just assume you're either a faker and taking up a blue badge space or using someone else's badge, neither is true and because I look young even though I'm not as young as I look, I have had a lot of verbal abuse sent my way and possibly even people scratching my car. I had one person shout out at me "You C***" and when I said I have CF, all I got was "Well I Didn't Know", well if you don't know, don't judge. I have also hadn't an old man say to me "Makes You Wonder What Counts As Disabled Now Days", his wife just said "It's Fine He Has A Badge". I've lost count of the filthy stares and death stares I have got from people and the tuts.
    I would be more than happy to have give up welfare support, my car and badge if it meant I could have my health and actually get a job without discrimination.
    In a job I had I was made to feel worthless by the management and some of the staff in my department, I worked at Tesco's in Winchester (now a Tesco Extra I believe) in the Dot Com Dept, the management tried to always make me feel guilty when I was ill or required hospital and seemed happy for me to work even after I had been coughing up blood, yet I would work when I was feel iller than any of them could even half cope with. Some of the comments included one that seem to get used quite often, "So when are you going on holiday again/next?", basically claiming I just wanted time off and hospital was just an excuse, or that I was just lazy. Another time one of the other staff members said to me "I can see you struggling there", and that was it, no offer of help. They then unfairly dismissed me, using what ever they could find.

    The government propaganda and media propaganda has made the situation far worse for the sick and disabled, especially those with conditions that are not visible on the outside. Things need to change and society need to get their compassion and understanding back because right now, there is huge amount missing.

    I wish the best to all and say never give up because really we are far stronger than those that do not have the things we have to deal with on a daily basis.
  • Misswillow23Misswillow23 Member Posts: 1
    Hi there I'm Deborah & I am a fibro/me sufferer
    Having a very hard time at work at the moment
    Have tried to request flexible working hours but they have just refused my appeal
    So stressed & upset don't know what to do next
    Has anyone else ever been in this situation & can you take any further steps to dispute under the terms of disability discrimination
  • SimplyJohnSimplyJohn Member Posts: 2
    Hi Lucy and all,
    That was a very moving article. It is so frustrating to be treated poorly as a result of something that we had no control over, or was a bit of bad luck. I have an invisible disability, narcolepsy. I don't have cateplexy, (sudden, uncontrolled episode of sleep while in public), so I am supposed to work. But, people don't want to hire a person they think has problems. It took decades of complaining before I was properly tested and the results were very clear. I have proper treatment now and hope to get another job, but I don't see that I have any choice but to keep it quiet. I'll have to disclose my medications for an on-boarding physical as they will probably show up. It's all very frustrating and it doesn't help when I realize how many others are being treated poorly for so many other disabilities.
    Good luck to all,
  • Innit4lyfInnit4lyf Member Posts: 4
    Hi all

    In the real world I live my life on wheels but I see as it as a challenge rather than a disability, to those who understand life's problematic challenges mine is (muscular atrophy) it affects mainly my arms, legs and weight having dropped 91lbs in six week making most people dieting jealous lol. My problem is finding employment I want work, but my experience field of work is mastered in concrete masonry, other than that I have little experience, but every time I apply for work it's just a knock back, and ten years of receiving knock back is daunting to say the least, going from a well to do job into a wheelchair for life then being struck of bi lateral embolism just seems to be the end of the working life, so where does one go from here when it seems that those who are in control seem to control it to their benefit, whereas many disabled people cover all walks of life as very few seek to sit back and watch the world pass by. No one person should go through life thinking that they are alone because if you want something so bad it's not IMPOSSIBLE
    (two words combined to merely obstruct the mind)
    these words are I'M POSSIBLE 
    the only problem is that you have to find a way round the red tape and who ever does find it should post how they accomplished their goal in order to better everyone's life not just the one...
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