Saturday 30 October 2010

Rose's Story

I have fallen between the cracks of the social system. As a disabled parent with Fibromyalgia and arthritis, lone parenting my child with autism, none of the various council Social Service branches knows who is supposed to be dealing with me. Adult social services says my parenting role isn't their problem. Child and Families will only deal with my child and not helping me to fulfil my role as a parent, and neither of them recognise the full picture.

Once upon a time, I was a bodybuilder, working as a paralegal-in-training to a top lawfirm, under the best partners. Then one day the pain started, and it got worse. I worked out more, just dealing with it - as I've always done with tough times, and it just spiralled. Brushing my teeth became an ordeal. I had to choose clothes I could actually fasten as I could no longer do buttons. I would sit on the bed for ten minutes, fifteen, the tears streaming down my face as I muttered under my breath "get up, get up, you have to get to work, get up, get UP."

I lost the job. And then I realised all those years of working hard and being a good little cog in the great wheel meant, well, they'd just go and get another cog, and throw the broken one away.

Weight piled on and I didn't know what was wrong. Thankfully no cancer; thyroid looks dodgy but without a private test they don't know for sure. Of course, since I'm female the first diagnosis was "depression" and "stress". But then, the fibromyalgia was diagnosed, and my whole world changed. I thought having a disability with a name would help open some doors. Instead, it closed them.

It is a rare thing for me to ever say to anyone just what my life is like. I don't tend to look at it too closely - it's sort of necessary to put on that Superwoman cape and put on the Everything is Fine mask to do your job as a parent. But there are things which throw the whole of my current life into sharp relief, when I have to take a good long look at just what has happened to my world - filling in DLA paperwork for my son, for example. Reading just how much of my day is taken up just taking care of my son the best I am able with every joint on fire is depressing - even more so that I don't even bother claiming for myself as I've already had the condition dismissed on one occasion as being a psychological response to being a parent and I "just need more sleep".

I get that sort of thing a lot: if I "just take a sleeping pill/anti-depressant (and wasn't I depressed anyway?)", if I "just lose some weight and eat properly", if I "just take time to work out a bit daily", I'll improve. That's all very nice advice, but ignores the fact that I was a bodybuilder BEFORE all this. Discipline isn't my problem, eating right isn't my problem. My son has never had a McDonalds hamburger, we don't have soda in the house, or candy. I eat 1200 calories a day, more healthy than any doctor or trainer I see, and I lose no weight. If I work out one day, I feel it for four...and who will tend my son then? If I'm depressed it's because I am fighting an uphill battle completely on my own whilst various council offices try and decide whose problem I am, and what it will cost to give me a paltry two hours' coverage just to clean my house (and so far, the answer is neither of them).

The simple fact of the matter is I know more about fibromyalgia than my GP - and thus he has given me carte blanche to deal with my health, not that I didn't already have it. Traditional medicine is good at treating acute conditions, but the chronic or the "mystery", that's something one has to deal with oneself. There is no cure, no treatment for fibromyalgia which is even remotely recognised by NHS - there are certainly things which help, but who is going to pay for it? How do I prove to social services that I am actually disabled when they can see my limbs are whole? I've become a scholar of myself - I know what foods will set off a flare, and what foods help. I know how much I can do in a day, and how much I can't. More often than not, I just have to ignore that and just get on with it anyway, and that only makes things worse.

In the past year alone I have gone from walking under my own power to needing to go up and down the stairs one at a time. I can't get in and out of the bath anymore, and I wash up in the sink. Everything aches, and the exhaustion means I go through the day in a haze, forcing myself to focus so I can be a parent to my child. I tried silversmithing, and had to give up as my hands locked. I typed legal documents at home - same. I had a rather successful toiletries and soapmaking business but it was so exhausting I had to give it up. Now I'm trying to write again, and just hoping that maybe I'll be able to find at least some job I can stick with for a little while before my disability strips that away as well. My son and I never go out as I can no longer catch him if he runs off, no longer have the energy to chase after him, I don't have a scooter, no car, or anyone to help me watch him when I go out because neither Adult services nor Child services can understand why I need these things, or which department the money should come out of.

We're prisoners in our house, and though I have tried to make it as beautiful as I could (and I even started a blog called Gilded Cage to show progress), we're still trapped here. I spend a lot of time staring at the world from my small daybed by the window, wondering where my life went.

Applying for any help has resulted in being constantly turned down. Rare for me, I called during summer holidays in tears to the Adult Social Services as I was desperate to help, any help, I didn't know what - and was told brusquely that they didn't want to hear about my disability, and I needed to "see a doctor" if there were problems. I had a nervous breakdown in June, and still had to try and chase for assessments for aid...again, I was turned down. I've also been turned down for DLA for myself and having to go through an appeals process, which may take up to a year before I get any results...and, if the reports are true, I'll be persistently put through the stress every few years to see if I actually "need it", given by someone who can't see pain.

Now that's just for me...add to this my disabled child. My son is not like "typical" autistic children - it seems the type of autistic child people are used to dealing with are the quiet ones who stand in a corner and flap their hands. My son is INYOURFACE, running round at full tilt, no sense of danger, always the centre of attention. He's a ball of energy and takes two people to keep him under control at school. Cheap toys which another child might be able to make last for a while break after a few hours. There are a lot of charities willing to offer toys or short breaks, but toys would have to be very durable, and short breaks to be honest, are not "breaks" for me - they're extra work and I'm usually exhausted by the end of it. He can be polite and talks very nicely, but that is due to me keeping a careful eye on his diet, giving him various supplements (vitamins, Omega 3-6-9), and lots and lots of work. It's nice that people think he is therefore a very well behaved boy...but it doesn't help to think that I have found a "cure". A medicated person is not cured. I have had to make this painfully clear on one occassion by sending my son into school for a week without any of the typical measures (no supplements, allow him to eat gluten foods). He exploded at school, and they couldn't believe how he was behaving. I told them calmly that how my son was behaving was exactly like what he was - a child with autism. What they were seeing was what I saw every morning just before school, and every day after school when he was exhausted from trying to be a good little "mainstream" child. He isn't - rages, tantrums and so forth are NORMAL, not "bad behaviour". I deal with it daily.

I also know more about what my son responds to than anyone else - I know what he loves, I know what he hates. I know how to deal with his tantrums and when to give in, and when not to. In my son's case, because he is a child, and because he is mine, his issues are the more frustrating as the sheer lack of knowledge out there (or the "latest study" which tries to paint a broad swath over what is rightfully called a spectrum disorder) does my son more harm than good - I can see issues coming from a mile away and I can warn others of its impending arrival, but I'm rarely listened to until the explosion arrives. The lack of help for what has already been described as an epidemic is ludicrous; what good is a short break to me when there's absolutely no "break" involved? And why is it so bloody hard to CONVINCE anyone of this without extensive studies and bits of numbers on a graph when an hour in my son's presence speaks for itself?

How is it people who should know better think "if a child talks, he's not autistic"? It's even been hinted at that I have "embellished" on his DLA claim. But these people aren't the ones who clean the faeces off the walls at 2am, or get the phonecalls from the school when he throws a chair at a student. If my son appears "cured" it's because of all the work and time and effort I have put into raising him. I sacrificed my health, my career, my marriage, my life on the altar of parenthood. But that doesn't mean my energy is inexhaustible.

When I finally managed to secure DLA for my son, the person I spoke to who confirmed the backpayment was coming was told not to file to my old account, but to my new one. I was told he would "try to remember to post a note" to send me a form in the post to change the details (which never came) and that was that. End result £800 deposited to old account, and I was only about to get £350. The rest has been absorbed by the bank and there was "nothing the DLA can do".

I tried to close the door to the study so my son couldn't hear me sobbing, but he did anyway. It may seem a "administrative error" to the Council, but that cost me over £400. There are quite a few of these "administrative errors" of late - and for someone who has to fight to find the energy and concentration to fill in the dozens of labyrinthine forms we're given as disabled people, that is time I cannot afford to lose.

It's a job to you, I know; it's just a number on the budget printout. It's statistics.

But this is my LIFE you're cutting.

I only have the energy to be an advocate for one of us...and because I am a parent, I will be an advocate for my son. For myself: cod liver oil, calcium and paracetamol, warm baths and the heater cranked to full in my room till it feels like an oven so I can sleep. When my son is in school I try and clean up the wreckage of the house, ignore my own needs, and just try to hold it together for my child. No washing the hair, no new clothes, none of those things which most women consider vitally necessary to life. I haven't been in a beauty salon in years - and if I did, who would wash my dishes? Trips out are exhausting, even for good things, and there's no transportation programme where I live which will help disabled families.

I learned not to ask for help because as I am not a UK citizen (US citizen and I worked here when I could work) I know exactly how the UK views immigrants. I've been benefit scrounging scum before I even bothered to accept benefits, and so I refused to do so. No fancy cars, bling jewellery or five-bedroom house here; I have no telly, no car, no fancy phone. I live on less than £10,000 a year, and I have done so without taking any benefits at all.

It's an existence. It isn't a life - and all those years I worked, I thought the money would be there when I needed it. When I paid my taxes I wasn't "immigrant scum" then; the government took my money quiet gladly.

When I need the help...where is it?

I know the convenient thing right now is to Blame All That's Wrong With Britain on people like me - the simple solution seems to be "find a single mother and point". But no crystal ball told me in 10 years I'd go from less bodyfat than my trainers to someone who can't walk 100 yards without falling over. When I said "I do" I didn't think it meant "until something better that isn't disabled comes along". I didn't know my son would stop talking at two, and I wouldn't hear him say "I love you" till he was five. I didn't forsee the years of tantrums and his tearing my hair out in fistfuls, the agony of trying to keep walking with my son on my back, going silent due to pain, the day my ex walked out because he couldn't take it anymore.

No amount of money is going to change that fate. But if I can somehow manage to LIVE rather than just eke out an existence, then I deserve to do so.

And when the time comes for you - and it will, hopefully later, rather than sooner - I'd hope the money is there for you too.

Friday 29 October 2010

Emma's Story

I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.

I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.

My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.

When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!

When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.

Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.

Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.

My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives

I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.

Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

Rebecca's Story

Six years ago I suffered a breakdown and was diagnosed with depression
and social phobia (also known as social anxiety disorder). I was 17.
The most work I'd ever done was in the village corner shop - a few
hours every week for a whopping £3 an hour, and of course I never had
to pay tax or NI contributions because I was so young.

When I turned 18 I went quickly and rather trivally onto Incapacity
Benefit. I remember going to have a quite hideous interview in a
really unwelcoming building - at the time I was pretty much housebound
and only because I was driven there by my mum was I actually able to
go. Still, I got the benefits and received them until I went to
university a year later. Because of the benefits I was able to get
some private CBT (Cognitive Behavioural Therapy) which helped me to
overcome my daily panic attacks: but I was far from better; the
treatment I'd had was a temporary solution to a problem that ran much
deeper than just my panic.

University went by, and I racked up around £25,000 of debt along with
most other students. I ended up oweing my parents a good few thousand
pounds that they refuse to allow me to even try and pay back. Because
I was a student, I couldn't receive benefits, even though my health
deteriorated to the point of being placed on suicide watch and under
the care of a psychiatrist. It's possible that I could have been able
to get some disability allowance from my university, but I was never
offered it and wasn't in a state to be thinking about going through
what would have undoubtedly been a long investigation into some help
that wouldn't come to much.

When I left university, and finally started to get some proper
treatment from the NHS, I applied for the new form of incapacity
- ESA. Because it was three years since I'd been on Incapacity
Benefit, I wasn't eligible to go straight back on that and had to go
through the rigmarole of applying again. So I did the form over the
phone with a very helpful woman who was patient with me when I got
upset telling her why I couldn't work. I started receiving benefits
and a couple of months later I was summoned to Croydon for a work
capability assessment. My therapist told me that it would be fine;
there's so much evidence of my ill health (from both the hospital and
my GP) that it would be nigh on impossible for ATOS to turn me down.

Oh, how wrong she was.

For those of you that don't know about the assessment, here's how it
works: you have an interview with a health professional. It doesn't,
actually, have to be a qualified GP: or even someone who is actually
qualified to identify your illness. It's just someone employed by the
private healthcare corporation to tick boxes. To "pass" the test, i.e.
be judged unfit to work, you have to score 15 points. I scored 0. On
the day, I had three panic attacks; one of them right before entering
for the interview. I was in floods of tears during the interview,
couldn't lift my head up, and was shaking. The woman who interviewed
me was rude, impatient and harsh in her questioning.

Thanks to the help of my local branch of Mind, I now have a benefits
advisor who is helping me with my appeal and tribunal process. Amongs
the help he has given, he gave me a copy of the work capability
assessment for mental, cognitive and intellectual functions. He and I
went through this and discovered that I should in fact have scored
well over the 15 points required. These questions include such
statements as:

"Normal activities, for example, visiting new places or engaging in
social contact, are precluded for the majority of the time due to
overwhelming fear or anxiety" - that scores you 9 points.

"Is frequently unable to get to a specified place with which the
claimant is familiar without being accompanied by another person" -
that scores you 6 points.

"The claimant misinterprets verbal or non-verbal communication to the
extent of causing herself or himself significant distress on a
frequent basis" - this scores you 6 points...and by now, you get the

I appealed twice and eventually went up for a tribunal in March. They
have a target of seeing you for tribunal within 16-18 weeks: clearly,
it is far beyond that now. Not only have I continued to receive only
£50 a week, on multiple occasions - despite me managing to put in
regular sick notes - they have refused to pay me either on a seemingly
trivial basis or one that they did not make me aware of. For example,
I changed address; they refused to pay me for 6 weeks until I had
proof of address and a new sick note bearing my new address. In this
time I had to borrow money from my parents to avoid being thrown out
of my newly-awarded temporary
housing from the council, because it had meant that my housing benefit
application was declined.

I now receive full housing and council tax benefit (which will of
course change under the Condems' new plans, as I am only 23). However
my application for DLA was turned down on the basis that I failed my
ESA work capability assessment. For something that is meant to be
separate to ESA, this is pretty disgusting. With that money I could
offset the £10-£15 I have to spend on travel every week.

I have had to subsist on £50 a week - including whilst homeless - for
over a year now. That barely leaves me anything to eat, once I have
paid my utility bills, my phone and internet bills that allow me
contact with the outside world and my support network on those days
that I can't leave the flat, my transport bills which are high because
I have to go to hospital twice a week and cannot drive.

This, of course, is just the numbers. This is before we even get to
the stress and anxiety that my struggle with the DWP, with the
tribunals service, with the council has caused me. Not only do I
constantly worry about money, but I am dogged by one single repeating
thought: "Maybe I'm not ill after all. Maybe I am just lazy, benefit
scrounging scum. I've never made a NI contribution in my life. I don't
deserve this. I'm leeching off people who are better than me because
they get off their arses."

I shouldn't have to feel these things about myself. I shouldn't have
to struggle on and try desperately to scrabble together food. It
shouldn't make me burst into tears when, like this week, my boyfriend
doesn't just bring over dinner for the two of us, but enough food for
me for a week. I shouldn't be sacrificing my health, and more
importantly my chances at getting better, because I can't afford to
reach out to the support networks that I so badly need.

Yet, I do. And the reason that I've written all of this up is that I
know for certain that I am not the only one, and I want other people
to know that too; because if you're not the only one then chances are
you're not making it all up, you're not lying to yourself, and just
because your disability isn't immediately visible doesn't mean that it
isn't there every moment of every day.

David's Story

The last time I felt this threatened was at the age of 13, when I refused to return to my mainstream secondary school after Christmas and New Year, and my parents (and others) tried to force me - or, at least, tried to forcefully "persuade" me.

As an undiagnosed Aspie - Asperger's Syndrome person - decades before that term was in common use, possibly before it was even coined, a mainstream comprehensive school was as close to a vision of hell as makes no matter. Nowadays I know all the "gen," as do the professionals - I have an extreme need for structure, stability, predictability, and routine. All things singularly lacking in the environment of a mainstream secondary school, where I was constrained to go from room to room, from teacher to teacher, and even from one set of class-fellows to another; I was cast adrift in a sea of flux, tasked with the impossibility of (metaphorically speaking) playing billiards while astride an unbroken horse.

Back then, I was not able to express my distress with anything much more articulate than "ouch," if I could manage even that.

Luckily, they gave up that day; I was not literally manhandled away, kicking and screaming. Sanity prevailed. After a series of appointments with Child Guidance people and so on, after some months I was referred (at public expense) to what was then called a "residential special school for maladjusted children," located some miles away from my hometown; sure, it was an unknown quantity, but as sure as hell it could not possibly be worse than what I had been facing for five days a week for what were already too many years.

Largely by happy accident, that school gave me what I needed: structure, stability, predictability, routine. Security. While it wasn't perfect - what is, where mere human beings are involved? - it was infinitely preferable to what I had previously been facing, up to New Year when I was allowed to "get out of the kitchen," and first allowed to be "at home with permission."

Of course, there was a serpent in this Eden. The law only required that I be educated up to the age of 16, and no further; since where I was was not exactly cheap, no way would such an establishment cater for post-16 education on the premises. There was a possibility of staying on and using the residential school as an hostel while attending a mainstream sixth form in a nearby town, but an interview with the Head of the school with that sixth form confirmed to me that I was just as "allergic" to mainstream education as ever.

So I had had respite for such a short time - a mere two academic years.

I went to a College of Further Education in my hometown, and while I passed three of the four "O" levels I took - at reasonable grades - I was utterly miserable at this time; I was grieving for the safe haven that I had lost, the comparitive paradise from which I was now forever exiled.

In no way did I want to repeat my sojourn at the FE College, so I did what I never thought I ever would; I returned, in the sixth form, to the school I had refused some three years before. A few things made that bearable; the bullies that had made my life hell were gone by then, and I was only studying for two "A" levels rather than three, so I had plenty of "recovery time" in the sixth form study room, which was quiet and secluded. I well remember the day that it was closed for some kind of repairs, and I had little option but to go into the sixth form common room, which was open-plan and noisy and very intimidating. Thankfully, the study room was not closed for long. I passed both "A" levels, but not at high grades.

I then spent three months at a Polytechnic in London, while living at home and travelling in four days a week; this was hellish to the max, and again after New Year, I quit this course. I needed a structure and support that just wasn't there; I didn't know it, and even if I had I doubt that at that time it would have been there for the asking. As far as I was concerned, I was back in "Ouch" territory and I had to get out for the sake of my own mental health.

After some months of rest and recuperation, part of this time being on the then Supplementary Benefit - the predecessor to Income Support - I applied for a local job as a Programming Assistant with a major defence contractor. It was the first job that I applied for, and I got it; those were different days! I spent fifteen years with that company, reaching the rank of Analyst Programmer, until the fall of the Berlin Wall and the "peace dividend" led to the inevitable defence cuts and eventually my name came up in one of the increasingly frequent rounds of redundancies. In some respects I was glad finally to be made redundant, as at least that increasing sense of insecurity - would it be me next? - was now over.

I tried various avenues in search of amenable work, meanwhile being in the very unamenable and totally mainstream-oriented "jobsearch" activity as required by the predecessor to today's DWP. Welcome, once again, to "Ouch" land. It couldn't last; in the year 2000 I went down with some flu-like virus, which totally poleaxed me. Recovery was slow and incomplete, and I was tired all the time - when I was awake at all. I asked my GP to free me from the treadmill of Jobseeker's Allowance, which I could no longer tolerate. I successfully claimed Income Support in lieu of Incapacity Benefit, on the grounds of post-viral fatigue.

My first Personal Capability Assessment (PCA) was done on a handwritten form; my Income Support was renewed. My second PCA was done on handwritten form; my Income Support was again renewed.

My third PCA was done on a PC, using the utterly discredited Atos LiMA system - not that I knew this at the time - and my Income Support was discontinued. Naturally, I appealed, and learned a lot of things very fast indeed - part of which was that I revisited my old psychological reports from my teenage years (copies of which I had acquired from my old school), and suddenly the penny dropped. There it was, in black and white - observations from trained teachers, an educational psychologist, and a child psychiatrist, which added up in today's money to a prima facie case for a diagnosis of Asperger's Syndrome!

I approached my GP with this evidence, and he agreed, referring me onwards. A generalist psychiatrist agreed, referring me to a specialist in the field; eventually, after long delays in the system, I received a formal diagnosis of Asperger's Syndrome. This was not in time for my appeal, which I won by other means, but was to prove useful later.

Shortly after winning my appeal, I received another form preparatory to another PCA. This time, I gave them both barrels; I now knew from the legislation what questions they were really asking in the mental health assessment, and I now had a good case under Regulation 27(b): "...he suffers from some specific disease or bodily or mental disablement and there would be a substantial risk to the physical or mental health of any person if he were found capable of work."

That form, when I returned it, had more additional pages than original pages. It had the desired effect; I received confirmation of continued entitlement without even having to attend a PCA in person, presumably under Regulation 27(b) (though the letter did not actually mention any specific Regulations by name).

Three years later, another form. Sent back with the same information, adjusted for the passage of time. Nothing heard for several months. Then a letter asking me to attend a PCA in person. Not good.

Protecting my interests as far as possible - by recording the proceedings, with the full foreknowledge and co-operation of the DWP and Atos - I attended the PCA. In connection with this, I have two separate complaints submitted to the DWP (correspondence not replied to or lost, nonsensical/insulting correspondence sent) and one complaint to Atos (communications not acknowledged/answered, communications responded to incompletely). So if I'm going down, I'm going down fighting.

I still haven't received a decision letter. I don't know if I will have to appeal - but if I have to, I will. The alternative to continuing to receive Income Support in lieu of Incapacity Benefit is the "jobsearch" activity (on JSA without even what a "neurotypical" thinks is support), which in its current form is about the most Aspie-hostile thing going - at least, it seems that way to THIS Aspie. I'd sooner be shot through the head, which would only hurt for a short time, then it would be over; I've been in "Ouch" land before, and I don't like it there (possibly the understatement of the year).

The waiting is the worst part, as they say.

On top of all of the above, the government's "cuts at all costs" agenda is extremely unsettling, and ipso facto Aspie-hostile to start with; since all this started, my anxiety levels have been much higher than for some time.

What is true for me must be true for countless people, many of them voiceless or not articulate enough to express their distress in ways easily conveyable to others. Some, of course, perhaps in the more advanced stages of dementia, will be unaware of the apocalypse that is about to be unleashed upon them. I doubt that this will prevent their moment to moment sense of discomfort at the resultant lower standards forced by the cuts such as those in the Mobility component of DLA.

Connie's Story

I have bipolar disorder and PTSD.  I have worked, served my country as a territorial soldier for many years, and done voluntary and community work, but now I am too ill to do paid work, although I do what voluntary work I can when I can.

I am dependent on benefits and I am very scared about the reforms.  I have read the revised criteria for ESA that the government says that it will bring in, and believe that I will not get ESA.  Yet when I have the inevitable breakdown, cuts already implemented in mental health services mean that there will be no hospital bed for me.

The cutbacks to housing benefit and council tax benefit mean that I would find it very difficult to survive on jobseekers allowance, especially as I am unlikely to find work and would be hit by further cuts to my housing benefit after a year.

Initially, I could make up the difference using my DLA, but I am afraid that mentally ill people will be targetted in the proposed cutbacks to DLA as we have invisible impairments.

When I became a soldier, it was to defend this country from threats from other countries, but now the threat to our survival comes from within, not from one political party, but from all three main parties.  I stood shoulder to shoulder with other soldiers in defence of my country and now I will stand shoulder to shoulder with other disabled people in defence of our community. 

It will not be an easy fight.  Already people I know who are not disabled tell me not to worry about it but to wait and see what will happen.  By then it will be too late: the reforms will have been enacted into law.  We must fight now, spreading the word far and wide about what is really happening to us.

Thursday 28 October 2010

We have a forum!

Huge thanks to Tony Martin for setting up our new forum for The Broken Of Britain

Everyone involved in this is a disabled person or a carer. We are all low on spoons. By sharing the burden we can make more noise, but please, bear with us. 

Access will not be perfect but we will do our best as quickly as we can. It will help if you can tell us what you need to make things accessible, it will help even more if you have the technical skills to make that happen and can volunteer any time.

Please, submit your stories. Do this in whatever format you wish. Video, audio, photographs, signed, sung, written. If you feel able to, put your name to it, if you don't feel able, please send your story anyway and we will submit it without a name.

Email your stories to

Thank you for your patience. Together we can shout loud enough to make a difference.

We need your help!

Initial thoughts, please can people add to this with their opinions of what is needed and match their own skills to them? 

Social Networking: People to manage twitter account, facebook account and other social networking tools eg digit, reddit, stumble upon.  Those 3 roles need to work closely together and would ideally be done by 1 or 2 people able to communicate with each other frequently. 

Forum moderators: helping to make all the users feel welcome, encourage interaction between members and delete or move inappropriate posts and threads.

Blog commenters; as this grows in popularity we will be attacked by certain sections of the blogosphere and media. The role of comment poster will be very important. It MUST be someone able to be courteous, polite, non party political and with relatively thick skin. Ideally several people could contribute. 

Film makers: The idea of a film with us holding up cards (in front of the face for those who fear being identified) with a strong soundtrack (probably the One song posted on the blog) will make a powerful impact on the world media. It should be relatively easy for people to contribute just by taking 2 photos of themselves, or webcam, but needs to be produced in a slick, media savvy manner. We need people with excellent technical skills to help. 

Admin/Pa’s: We need a few people able to handle the email and help to get stories onto the blog.

Researchers: We need experts who can study each area of the proposed cuts, in detail and produce summaries. Perhaps this is something those of us who are professional journalists can help with? We’ll need detailed breakdowns on how each area will affect different groups of people and how the overall impact will affect us. 

Writers: Those professional journalists who are in the NUJ are prohibited from working for free for the mainstream media. We need people who can pitch targeted stories to the wider press, the Guardian is great but unless we can get papers like the Telegraph to publish us we won’t win this battle. The Telegraph have published articles expressing concern that the cuts damage the wrong people. 

Social Policy Experts: What will the impact of a mass migration of disabled people out of expensive areas mean? How will this impact on the local authorities they are leaving and those forced to receive them? What will the costs be? 

PA’s/Carers: Do you have mental health problems but are physically fit and able? Could you perhaps offer some practical support to a physically disabled person? Can we physically disabled people offer more emotional support to those with mental health issues? One big problem with public demonstrations is that we do not have the PA support we need to enable us to attend. Can we create a carer pool of people who are able to support each other so we can consider organising local demo’s? 

Technical expertise: We can do this if we all contribute. Even if you only have 10 minutes a day, you can make a difference. Please go to our forum The Broken Of Britain.  Register. Add to the volunteering list the jobs you think will be important. Please see which roles match with your skills and offer to help with them.

Tuesday 26 October 2010

Paul O'Grady - Come Join The Revolution!

Something was brought to our attention today and I have to say... we likey!!

When you first think of Paul O'Grady, the first thing that springs to mind is that he's a British comedian, television presenter, actor, writer and radio DJ....

However, during his chat show on ITV, he made his feelings on the Governments spending cuts very clear......

BendyGirl on BBC Radio Leeds

Following on from BendyGirls letter to the Prime Minister and the setting up of Broken in Britain, BBC Radio Leeds contacted BendyGirl to discuss the welfare cuts being made Government.

Blood In The Sand's Story

It is morning and I lie in bed staring at the broken light hanging from the broken fixing. I should get up, make some tea, eat and venture into the world but I can’t. I’m too scared. I close my eyes and leering faces with no lips scream at me and I begin to cry.

Access to The Broken Of Britain Forum

We are aware The Broken Of Britain forum is not accessible to people using screen readers. None of us are access specialists so please bear with us while we do our best to ensure access. If you have the skills and time to help us make the sites more accessible, please email

For now Martin has suggested a work around.


Then go to Register with the site and download the plugin. That will allow blind people to solve visual verification captures.

Thank you for your patience and thanks Martin for the advice!

Monday 25 October 2010

Joanna's Story

My story! Well, how long you got!!! I'll try and keep it to the point!

I'm 33, I was born partially sighted and lost my sight around the age of 15. I went to a mainstream school after my parents battled with the local authorities at every stage. Eventually a few months before I lost my sight, I decided the lack of support and amount of hassle my secondary school was giving me just wasn't worth it.

Katie's Story

I am 24 years old. As long as I can remember, I've wanted to be a librarian. I began life with a hereditary disabling condition I never knew I had, which was left undiagnosed for more than 20 years.

Jenny's Story

As a teenager I was pretty normal, well as normal as a sensible goth girl can get. I do remember feeling exhausted all the time and barely going out at all compared to other people my age. My parents and I didn’t think much of it... not many people would. I got my GCSE’s and went on to do A Levels. My work started to suffer as I got older, I became more tired, sometimes missing lessons because I had fallen asleep in the common room and no one had thought to wake me up.

Karen's Story

I've just been to the website and felt I wanted to write and send my story to you.

Okay, now where to start?........From the beginning I guess.

Pam's Story

I have like many others of us been in total shock and disbelief since the spending review.

I was born disabled with hemiplegia,went to a mainstream school [after my parents fought for a place] left school with 'o' and c.s.e levels.was only out of work a day in 1979 [time of recession] and worked fulltime for a months later I was made redundant.

Shelley's Story

Things were promising when I was younger. Top of the class, I was studious, dedicated, motivated. I enjoyed music, singing, acting and dancing on stage, long-distance swimming, cycling and much more. On my 16th birthday I interviewed and was offered my first job, 20 hours a week on top of my 25 hours of school studying for my GCSEs.

Diana's Story

I am so glad to see this site. The new ATOS Nazi brigade use a USA medical insurance claimant's form designed to reject 90% of applicants. It is straight from the USA and it has no relation to disability whatsoever. ATOS are also affliated with Experian the credit agency and they have a history of incompetence in the 'medical' field.

I'm not crazy, I'm just a little unwell

This feels like an apt song to get us going.......

Will It Make It Easier On You Now You've Got Someone To Blame?

Sunday 24 October 2010

Casdok's Story

I thought society was making some sort of progress by closing down the long stay hospitals ‘allowing’ us out into our own communities. Obviously society wasn’t ready for us as they are putting us back behind closed doors unable to afford to go out.

Sue's Story

I've always been ambitious and hoped one day I would work in politics. Sadly, at just 10 I started to suffer from Crohn's disease. I wasn't diagnosed until I was 16. Despite this, I still went to university and tried very hard to work for 9 years.

Lizzy and Emily's Story

Angry and Hurt's Story

I have neurofibromatosis type1, my specialists and doctors have done what they can for me and many of them have now retired. When I was awarded the higher mobility and lower care allowence "indefinitely" I breathed a sigh of relief, now more fighting for it...

A Video Message Idea

With thanks to @HellsBells265

A Video Message Idea

PLEASE NOTE: The Broken Of Britain is a non party political campaign, by and for disabled people and carers.

Martin's Story

I have ROP retinopathy of prematurity, which has left me totally blind.

This was caused by hospital negligence, and on top of that fact, I am now feeling the state are penalising me for being what they made me, blind. I feel hated, disregarded and in constant fear of what the state will do to my disability related benefits. I do not want to be blind, I was not born as such, the state, by their inadequacy in my care when I was born prematurely made me as such, and now, I feel they are punishing me for being disabled.

Rebelgrrlzine's Story

Penny's Story

I am 54 years old and disabled but my life hasn't always been about disabilities.

I am married with 3 children. When those children went to school I returned to work in the caring profession. I already had Psoriasis at this time but it was manageable. Firstly I worked with elderly in a residential home and then in the community. I then developed Psoriatic arthritis and over a few months my left knee became fixed at an angle causing me to limp.

Zellieh's Story

Please be warned, this story contains possible triggers for suicidal behaviour but Zelliah wants their story to be published. Thank you for your bravery.

Emuna's Story

I started work at 16 and later went to University as a matured student. I worked when I was at Uni too - washing dishes in restaurants in the evenings and babysitting.

In my thirties I started work as a Probation Officer, a job I loved. I felt like I could make a difference to peoples lives. Over the years the job got harder and harder though. Case loads increased and we had to meet strange targets that didn't make sense to most people in the field. Every time we had a change of Government or a change of management in the Service everything would change and we'd have to re-learn our jobs. I got to the point where I felt like I was going round in circles. During this time I lost both of my parents and there were various other family problems to cope with too. Looking back I was very stressed.

Mary's Story

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

Very Dull's story

I am society
I will decide if you are disabled or not
By giving you forms and medicals and trips to the hospital
I will make buildings with stairs and inaccessible transport.
I will make unwritten rules so that if you behave differently you will be excluded and isolated from other people.

Heather's Story

At 2.15 in the morning of October 2003 the police got my husband and I from our beds and half an hour later we were driving from the midlands to Dundee where our 22 year old daughter had suffered severe head injuries in a car accident.

Keith and Margaret's Story

My Husband Keith, is 64 years old, and had worked since he was 15 years old. He has suffered with mental health problems for over 20 years, but had managed to work despite this until he suffered a very bad Break Down 5 years ago. At that time he was diagnosed with Bipolar Disorder, and I cared for him through a very difficult 6 months, while also caring for my Mum who had Cancer and who died 5 years ago next week. We did not claim Benefits during this period as he was salaried and his salary continued throughout that period. His company agreed that he could return to work part time at first, and gradually increasing to full time. Again, we did not claim benefits, and subsidised his loss of earnings with our savings.

Julia's Story

I am enraged by the cuts to our benefits and services.  Apart from what will happen to me and all disabled individuals my local organisation of disabled people is faced with possibly losing all its staff.  I want and hope that disabled people and our allies will fight back hard.  I think we wont be alone once tens of thousands start losing their jobs and women start realising that the government has stolen twice as much from them as from men.