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Guest post: I'm fed up of having to perform my disability
LucyB
Member Posts: 13 Listener
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.
Replies
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?
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.
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.
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!"
Where did all the nice, thoughtful kind people go?
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.
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.
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?
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.
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
I really hope things improve for you soon.
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.
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.
Please keep writing.
-B
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.
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.
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.
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.
I could so identify with it too
I am so grateful to her for that because it needed to be said
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
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 .
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.
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!..............
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 @ www.daddybentlegs.com
Cheers,
Neil
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
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
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..
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
skills.
Vicky xx
Hi Vicky,
No unfortunately this happened about four years ago and I am no longer able to work
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.
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.
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
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,
John
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...