Scleroderma & Raynaud's UK (SRUK)
6,792 members3,213 posts

This was written by someone on the Lupus Site ::: So Scary = how are we going to cope!!!

Ability Disabled

I've been trying to pin down a hazy idea that's been floating about in my blog-head for a few weeks now.


People greater and way better informed than me have struggled with definitions of disability for decades, so I won't pretend to analyse social models or medical models or biopsychosocial pseudo-science.

I'm thinking about our lives. And the way that they've changed since around 2008.

I never ever thought of myself as a "scrounger". Far from it. I had a terrible illness that limited my life in thousands of ways. Crucially, I was never given any cause to.

My Blue Badge was the thing that improved my quality of life the most. It literally made the difference between leaving the house and not. If I can park right outside the door of the supermarket or the school or the hospital, I can go, if not, I simply can't manage.

Yes, I can walk. I can just about get round a small supermarket without feeling so exhausted I have to sit on the floor. Before I had the Blue Badge, I regularly had to sit down in a shop and put in an SOS call to my husband. I became more and more insular, less able to enjoy the things everyone else took for granted.

When I decide to go to a shop or a school concert, I know that the rest of the day will be a write off. How does the act of over-riding my disability affect everything else that I do? My energy and ability are limited (see The Spoon Theory for a wonderful explanation ) and for me, managing my disability means achieving as much as I can, every day, with the limited ability that I have.

I could have given up. Many do. I could have gone to bed and said enough was enough. Given up the daily struggle for a degree of normality.

I could give up on food (it disables me more than anything else) and accept a permanent feeding tube. But I like food. I refuse to give up on something so fundamental, so entwined with social interaction and pleasure, just because it hurts and makes me vomit and keeps me on the loo all day.

I could have chosen not to have children. Some might legitimately argue that I should have done. But imagine the joy I'd have missed? The love that fills the places where pain lurks. The shiny little faces that make me be more, do more every single day. Sometimes (well, often) it's all way too much, but they keep me going, always more important than my various symptoms or dark, dark, days.

I could use a wheelchair, I very often need to. But then I become more disabled. My muscles waste a little more, my heart would get a little weaker, my blood, already sticky with inaction would clot a little easier, potentially bringing on stroke No2.

I could stop bathing or washing my hair or getting myself dressed. Sometimes those simple things take me all day. Sometimes I can't do them at all. But then who am I? What is left?

Disability Living Allowance (DLA) was the extra money to acknowledge all of those things. It meant I could buy food that didn't make me as ill. It meant that I could pay for some help in the bad times. It meant that I could get my children to school in a taxi on days I can't leave the toilet. It meant that I got a Blue Badge.

As we all trawl through the criteria for the new benefit to replace DLA (PIP or Personal Independence Payments) it becomes clearer and clearer that is designed to disable.

If I can make a simple meal using a microwave, if I can get dressed and wash myself, if I can walk more than 50 metres, whatever it costs me, I am no longer disabled. It no longer matters what those things cost me, their effect is irrelevant. If I can clean up my own incontinence, incontinence is no longer disabling. If I can chew, I am not disabled, never mind the carnage that the transit of that food causes.

So, if you are disabled - and make no mistake, I mean disabled in any way at all - deaf, blind, paralysed, mentally ill, or if you have a "fluctuating condition" like mine - if you can leave the house, care for yourself in the most basic ways and stumble through a semblance of "life" you will not qualify for PIP. If you give up, stop trying, stop fighting for every minute of every day, you might.

The same is now true of social care. As councils up and down the country attempt to save an eye watering 25% from budgets, "moderate needs" no longer exist. You must simply struggle through "moderate" until the daily effort pushes you towards "critical" Then the skeleton remains of state assistance will pick up the damaged pieces. And those pieces will be more damaged, will cost the NHS more money.

The message on disability is clear and is ringing out loud and true across every town in the country - "Give up, don't fight, don't try to be the best you can be, don't cling to pleasure - it is not for the likes of you.

Don't you dare EVER have good day, take a holiday, and God forbid, throw caution to the wind and risk days of pain for a moment's joy on a water slide. Don't stay active, don't keep your disability at bay for as long as you can. Don't try to avoid costly medical interventions. Don't let your neighbours see you in the garden or hoovering the lounge. Don't cook a beautiful meal, eat microwave meals and be grateful. Don't be so selfish! How DARE you think you deserve a partner or children and if you do, expect that they will become more exhausted, more neglected as they are expected to become "critical" themselves just caring for you.

It is a terrible, sinister shift. Possibly not designed to be so - who knows? I could no longer say for sure if this is utter ignorance and a lack of understanding of disability, or a sinister attempt to ensure that disability becomes more marginalised, less visible and in the end.... well in the end what? What will become of us?

The Government think we will all buckle down and get jobs. I still cannot imagine in any way at all what makes them think we didn't try that already - in some cases, mine included, until it brought us to the very brink of trading our lives for a pay cheque.

We are talking about millions of lives, not just a handful. Half a million people losing DLA - half a million!! Many more losing ESA. Yet more left to sit in their own filth, eating when a neighbour knocks to check, for want of a little social care.

Once again, I ask whether we need to wait for this terrible, inhumane bomb to explode across our news bulletins or whether we think again. Now. Before it is too late.

14 Replies

thank you for this post, because it gives me hope, diagnosed with systemic sclerosis and just starting to see it affect my life.

Food is becoming an issue, swallowing. If i forget my medication, i can't move.

Now heart involvement.

But reading this, i won't give up, but try to accept help (which i find difficult)

Thank you x x x hope you have many more good days than bad x x x x


You've left me in tears, I have experienced every single one of the emotions you have expressed, I don't know what we are to do? We are all in a catch 22 situation ,as for the most part we don't have the energy to fight alone. Thankyou for sharing all this information, I'm not a great one for wanting to share burdens with people in similer state(I think it reminds me too much how unwell I am) but for once I feel an affinity with someone, Thankyou, perhaps we should all stand to gether for our cause. I hope to hear more from you, Sandra Marie xxx


I am sorry to hear that you are so ill but what you say is true. I am due to return to work 19th March after a year off sick. I had an appointment with the people from the ESA. The questions they asked were laughable and the strength test consisted of the nurse telling me to press down on her hands and as my fingers touched hers, she moved her hands away. Then she told me to lie down and raise my leg and press it against her hand. She moved her hand away before I could touch it. I said that this was not a proper test but she said nothing.

I got a letter to say they would stop my money a few days after they stopped it. It was less than a month before I am due to return to work. There must be some way to get the money for those few days. I need it for my bills and living. I appealed and they say I did not give enough information. I have to write again.

Surely there must be some emergency payment to get for this time? I am in the process of finding that out.

If you can think for yourself, do some housework and are not incontinent then you are fit enough to work.

My health is a lot better than it was but I am still not 100%. But I have to return to work because I must live.




I found the above on the LUPUS site of HEALTHUNLOCKED .. It is very interesting because their ailments are very very similar to ours !!!


I am, at the moment, undergoing a reassessment for ESA - I have been on IB for over 6 years after being retired from work on ILL HEALTH GROUNDS. My health has got worse rather than better but try not to be a burden on my husband, family and friends - however, maybe we should just give up and lie in bed 24/7 !!!!


What a well written eloquent article - rings so many bells with the experiences my boyfriend has had, having endured Crohns, ME & Ankolosing Spondalytis.

Can you not get a mass petition organised with your piece as the forward, & a letter to downing street?

Everything you say is so relevant to so many people that through no fault of their own cannot work..


Hi Sue,

I am seriously thinking of putting a letter together to the PM... Honestly, I am 56 years of age, worked since I left school and then had to leave work with Ill Health Retirement because I could not do my job or any other similar jobs. That was in 2006 - It is because I do not work any longer that I can manage to live day to day. I have Systemic Scleroderma, Raynauds, and a few other auto immune conditions which affect my daily life .... What annoys me most of all is that people come into this country and dont have to go through any of this stress - in other words they get it on a plate .... grrrrr


Thats not entirely true anteater! I,ve worked with immigrants and their living conditions/income are often worse than anything i,ve EVER seen. The media tends to portray something quite different - anyway, thats a different story!


Ive been told by the job centre at 56 and with my condition i wont get a job . Esa said im able to work . disability said no way so how do i pay bills and with Jsa now its going to be a nightmare.


But what does DWP expect us to do - where are the jobs!!!!!! Even youngsters cant get a job so how do they expect sick people to get one... Employers wont put up with sickness anymore - what is the government on!!!!


The government are just changing the rules/moving the goal-post to save money! Our lives will not be any different, we will not be any less disabled just because they say we can work.

Society has not adjusted enough to accommodate those of us with a disability - I have trouble just opening the door at my local corner shop. I'm sure you all have similar experiences.

If I was offered a job based on my skills, experience and qualifications, I don't think it would be long before an employer got irritated with me taking days off sick because I can't physically move or the repeated trips to the hospital.

Has anyone questioned the implications on Health and Safety Law? If I passed out at work because of a Raynauds' attack, would my employer be covered? I was dismissed from a job once precisely because of this, but because I wasn't diagnosed at the time (and the job was though an employment agency), I had no case for unlawful discrimination.

Do the government seriously think we 'enjoy' living on this amount of money?


Well said Layla xx

On another note: at least the warmer weather is coming now (hopefully) it will cheer us all up a bit xxx


The original post was written by Sue Marsh on her Website below,

Sue is one of the authors of the 'Spartacus' Report which was sent to all MP's prior to the votes on the Welfare Bill. You can follow Sue on twitter at @suey2y

And yes, the govt don't expect us to live, they expect us to die, preferably sooner rather than later.


Thanks GreenJade Dragon - her site is brilliant xxx


You may also like...