Thursday, 30 December 2010

A New Year's Message from The Broken of Britain

This year was not kind to people with disabilities. 2010 began with a steady trickle of horror stories about Employment Support Allowance introduced by the Labour government in 2008 as the replacement for Incapacity Benefit, thus creating a draconian system making benefits conditional on work-related activity for most claimants. This conditionality is based on assessment by ‘healthcare professionals’ who are not doctors and may not be familiar with the variety of health conditions they face. The assessment is run by private sector provider Atos, who refuse to release the details of the test used to assess eligibility for reasons of ‘commercial interest’. There followed more disability charities lining their own pockets by colluding in the unfair system rather than fighting for those they claim to represent; and continuing doubts regarding the future of Disability Living Allowance (DLA) paid to help disabled people face the additional costs of disability.

Labour eventually backed away from DLA, and disabled people sighed with relief. Past Tory zeal for chopping at the welfare state and the Tory papers’ penchant for calling disabled people cheats has not befriended the party to us, but the Coalition Government was not totally objectionable. After all, David Cameron has experience of disability in his family, the Tories made an election promise to safeguard DLA, and the Lib Dems were not a party of unfair and discriminatory cuts. Early statements and the news of big changes to come caused some unease, but the first real signal of the Government’s intention came in the Emergency Budget, with George Osborne’s announcement of unnecessary medical tests for DLA claimants.

Since June, news of substantial losses for disabled people has come thick and fast. The axing of disability bodies doing useful and necessary work in the cull of quangos; a Comprehensive Spending Review which removed the mobility component of DLA from those in residential care to much anger; time-limiting contribution-based Employment and Support Allowance to 12 months in the same review; the cutting of advice on benefits; the fudged Harrington review of Employment Support Allowance which avoided the major points of criticism; the three-year extension of a contract worth over £100 million per year to Atos; all whilst disability charities continued to cheerfully pick the carcass of the welfare state. Then came the straw that broke the camel’s back – the Government decided to scrap DLA and replace it with a new, leaner system called Personal Independence Payment (PIP) - the public consultation on DLA reform closes on February 14th. PIP will cut the DLA caseload by 20% using testing similar to that used for Employment and Support Allowance. The case for reform is badly flawed and there are several damaging changes hidden in the small print. For example, six-times London Marathon winner Baroness Tanni Grey-Thompson could lose out because she uses her wheelchair too well.

The Coalition Government has heaped misery on disabled people in just six months, backed up by their tabloid attack dogs, targeting them more than anybody else. A week after breaking the camel’s back, the Coalition decided to bash its head into the sand by axing the Independent Living Fund. This money funds 21,000 people to live independently who would otherwise live in hospitals or residential care, at far greater economic and social cost. Maria Miller, Minister for Disabled People, justifies the decision by deeming the ILF to be “unsustainable”. On a personal note, my best friend relies on ILF to support her care needs. ILF enables her to live independently and employ her high skills. Her contribution to society, including the tax she pays, is enormous. I suggest the Minister try telling her that her support is “financially unsustainable”.

By targeting DLA and the Independent Living Fund the Coalition have gone too far. A number of new disability rights groups and websites have responded to the proposals with focus and determination and are organizing alternative protest and direct action. Whilst the disability charities busy themselves forming consortia worth £654 million to bid for Government back-to-work contracts, protesting for disability rights is coming from the grassroots using our skills to raise awareness of our fights and to build political alliances. Public sector workers have been unfairly targeted as well; students too are victims of cuts and broken promises; these and other Coalition targets are our natural allies. We are campaigning on many fronts and ask that you join us in doing so by signing our petition to stop DLA reform and supporting our DLA campaign, as have a number of Lords and MPs including Jon Cruddas and Hywel Williams. We are getting MPs to ask questions, start debates and table Early Day Motions on DLA, pressuring the Coalition to back down.

2011 will be a good year for disabled people as we petition this Government to withdraw on DLA and the Independent Living Fund, and to bring fairness back into Employment Support Allowance. David Cameron and Iain Duncan-Smith have picked the wrong fight.

- by Kaliya Franklin and Rhydian Fôn James

Wednesday, 22 December 2010

Decision Time

In Parliament, there are only two options for which to vote. Abstaining is, in most circumstances, a cop-out. Likewise in the real world, politicians must make it clear where they stand. Staying quiet and trying to keep your head down is not an option.

Please send all MPs and others a message of support telling them that the more they openly resist the worst excesses of the attack on the welfare state, and particularly on ESA, DLA, and ILF, the more faith we will have in them. Now is an especially good time to send the letter below to Liberal Democrat MPs, who need a nudge in the right direction, but send it to others too.

Dear Member of Parliament,

Season's greetings! It is time for you to speak out against this Government's assault on the welfare state, if you have not already done so. Many of these attacks are aimed at the disabled people of this country - time-limiting contributions-related ESA, reforming and cutting Disability Living Allowance, scrapping the Independent Living Fund. This Cripmas Carol sums it up:

Disability rights group The Broken of Britain have compiled a campaign resource, suggesting things for MPs to do:

The more you openly resist the worst excesses of the attack on the welfare state, and particularly on ESA, DLA, and ILF, the more faith we will have in you.

Yours sincerely,

Monday, 20 December 2010

Disability Activism: A Just & Worthy Cause #TBofB

UK Uncut has published an article I wrote on behalf of TBofB about disabled activists and the anti-cuts movement.You can read the original here: Disabled Activists and the Anti-Cuts Movement

This is a guest post by Lisa J. Ellwood, disability & mental health activist. The Broken of Britain is a non-party political campaign providing advocacy for physically & mentally disabled people of Great Britain and their carers. You can follow Lisa on twitter here

"The moral health of a society can be judged by how it treats its most vulnerable members" – a new twist on an old saying that is itself rooted in religious antiquity. How sad it is that 3,000 years later this sentiment is still very relevant. Author and MS Philanthropist J.K. Rowling made much the same observation in her best-selling Harry Potter series with the following pearl of wisdom: "If you want to know what a man's like, take a good look at how he treats his inferiors, not his equals."

Recent media coverage has shone the spotlight on disabled people, and that spotlight has been less than favourable. We are castigated as 'scroungers and 'fakers' not only by journalists and their employers, but also neighbours, friends and even family. It would seem that the vast majority of the great British public knows several people who are as fit as a fiddle and audaciously raking money in hand-over-fist thanks to bogus benefits claims based on faked illnesses. There is an endless stream of rhetoric to be found when reading any newspaper, blog or listening to talk radio. Too often I find myself reading the latest venomous shots fired by the disgruntled and wonder if the face behind the pseudonym is a familiar one.

It takes much more than one voice singing in the darkness to shed light on a given concern. It is this basic understanding which brings the most unlikely of people together to work towards a common purpose. While "The Broken of Britain" campaign is in its infancy, the core group of people involved are seasoned veterans when it comes to raising awareness about their lives as disabled people in the modern world. We come from differing backgrounds, have a wide range of illness physical or mental - and we all have differing perspectives on the contentious issues concerning disabled people. The one thing that brought us together as a collective was our tacit agreement that the current coalition government is waging wholesale warfare against the most vulnerable in British society: women, children, the poor and disabled people specifically. The irony is that funds and services for disabled people includes women and children from all backgrounds (including celebrities collecting benefits for their disabled children).

We have supported the various anti-cuts initiatives including boycotts, protests and petitions. That support will continue. The only thing that we have ever asked is that the not yet disabled keep an open mind and lend their support to our efforts in kind. Contrary to populist belief, disabled people do as much as we possibly can to help ourselves – as much by personal choice as driven by circumstance. However, we do need the active support of able-bodied people. What we bring to the anti-cuts movement is no different to what we've always had to do in order to get even a modicum of much-needed help with daily living.

However, it is a double-edge sword for us – standing up for ourselves, so to speak, by participating in protests typically elicits the salvo "if you can manage that then you are fit to work" or even worse "you asked for trouble just by participating". Disingenuous statements and worse have been levelled at Jody McIntyre, the disabled activist pulled from his wheelchair during a recent student protest and dragged across a London street by no less than four Met Police Officers. We are made to hold account for our unenviable predicament by the society which victimises us. Many disabled people hold back from activism because they are afraid of taking the risk and then having it used against them. We are broadsided on a daily basis by the insensitive and uninformed, no less because of the stigma attached to being physically disabled, mentally ill or wresting with the energy-stealing demons of "invisible illness". It's bad enough for someone who struggles with physical disabilities, but for those with 'invisible' and/or mental health problems there is added trauma in processing the searing hatred coming from wilfully ignorant and wholly unrepentant able-bodied people. In the words of Benjamin Franklin, one of the Founding Fathers of the US, “justice will not be served until those who are unaffected are as outraged as those who are.”

For those that care to, it is easy to engage with disabled people; all that is required is communication. Yes, we will have missteps along the way and on both sides. But in speaking to members of the various students groups via social media, I have reminded them that once-upon-a-time I was student, able-bodied and thinking I had my 'whole life ahead of me'. The life I lead now as someone who lives with both physical and mental illness was not one I had ever considered for myself. As little as two years ago I could not have foreseen how drastically my life has changed in the past year alone. The only good thing that keeps me holding on is the fierce determination of those whom I work alongside. It is a great privilege to fight a good and just fight with people whose entire lives have included coping with chronic illness far more admirably than I have in my situation in the past year. The powers-that-be have come first for the most vulnerable of British Society. It's easy to close hearts and minds to a situation because you believe it's nothing to do with you. But one day it just might be you they come for, you who needs to fight tooth and nail to save your home, you child or even your own sanity.

The afore-mentioned Ms. Rowling has bequeathed to us a legacy of accessible wisdom. To paraphrase The Greatest Wizard of the Age, Albus Dumbldore, Headmaster of the Hogwarts School of Witchcraft & Wizardry: it is our choices my friends, that show what we truly are, far more than our abilities. These are dark times and the moment is already upon us when we must choose what is easy and what is right. We are only as strong as we are united, as weak as we are divided. All who are not in the decidedly comfortable position of an assured future must work together bound by the fears which concern us all. It is imperative that we fight, fight again and keep on fighting - for only then can the underhanded be kept at bay, though never quite eradicated. "We teach people how to treat us" – so the old saying goes. Differences of habit and language are nothing at all if our aims are identical and our hearts are open. Indifference and neglect often do much more damage than outright dislike. The consequences are far worse should they be the result of simply giving up.

The 12 Days Of Cripmas

The 12 Days Of Cripmas is a topical take of a classic carol listing the benefits and services currently being removed from disabled people in Britain. The lyrics were written by a user of the Ouch messageboards, sent to Where's The Benefit and the track produced and directed by BendyGirl of The Broken Of Britain. We're all incredibly proud of Imana our 11 yr old singing star who's mum has Multiple Sclerosis.

Happy Christmas to you from all of us at The Broken Of Britain and Where's The Benefit 

Please share this track everywhere and let's see if we can get it some national media attention!

URGENT - e-mail MP with casting vote on housing benefit changes

URGENT - e-mail MP with casting vote on housing benefit changes

Disabled People Against Cuts are calling for urgent action today to prevent changes to Housing Benefit that will push disabled people further into poverty. The group, which organised last week's protest, is calling for us to e-mail MP Stephen Lloyd. He has the casting vote today on changes to housing benefits that could disproporiately affect disabled people. The government is trying to sneak these changes through with as little debate as possible.

Details and advice on what to say in your e-mail are at DPAC's page here - the address for his office is They suggest that we just write a short e-mail reminding Mr Lloyd that this could lead to more and more disabled people living in extreme poverty, having to be housed in temporary/unsuitable accommodation, or in care homes. It might be worth mentioning to him that we appreciate his vote against the tuition fee rise, and that we hope he'll show us the same bold support.

They'd also like us to e-mail Steve Webb, a Lib Dem DWP minister who has said that disabled people have too much money and therefore we do not need winter fuel allowance. This is not only an attack based on misinformation, but it also goes against the Lib Dem's pre-election policies. They promised us Winter Fuel Allowance. Given that they now can't keep that promise, they've U-turned with a cruel, damaging statement that chimes in nicely with the coalition's wider attack on disabled people. We can't stand for it. I'll be e-mailing Steve Webb today to tell him what I think -

The more of us that do this, the better. Protesting can happen from home, too.

Saturday, 18 December 2010

Say NO! to DLA cuts - how to take part (UPDATED)

As has been discussed by The Broken of Britain before. the proposed reforms to Disability Living Allowance (DLA) are flawed, and no more than cuts in disguise. Stopping the changes to DLA won’t be easy, but there are things each of you can do, either as members of the public or elected representatives. Here’s a guide for those who want to fight:

Members of Parliament: If you hold this office, use it! The first thing to do is sign our petition and to ensure that people know that you support it. You may also wish to tell your disabled constituents. Another possibility is tabling an Early Day Motion opposing the DLA reforms/cuts – or support it if one has already been tabled – and getting colleagues to sign it, as a measure of opinion. Thirdly, you can table an Oral Question on DLA reform during Work and Pensions question time on Monday 10th of January 2011. Lastly, apply to the Speaker’s Office for an adjournment debate. If possible, try to arrange this for Monday 16th of January 2011, as The Broken of Britain has plans (explained below) for the 14th-16th of January.

Lords/Ladies: Again, the first thing to do is sign our petition and to ensure that people know that you support it. You may also wish to table a question to the Government on DLA reform. Lastly, you could table a Question for Short Debate on DLA reform.

Members of devolved legislatures: Cuts to DLA will impact on health spending, social services and local government, not to mention the secondary impact on education. As such, devolved legislatures in Scotland, Wales and Northern Ireland are well within their rights to ask serious questions of the UK Government on the issue. As well as signing the petition, member can table a statement of opinion on the DLA reforms. You can also ask the Minister with responsibility for health or local government an oral question, forcing them to put pressure on the Government.

Local politicians: It is important that the pressure on the Government comes from local politicians too. The budget for social care will be hit in your area too, so it is important that you ask questions of the relevant portfolio leader on your council, forcing him to transmit concerns up the ladder.

Members of the public: We may feel quite powerless at times, but there is a lot we can do to maintain the pressure. To do this, follow the steps in this Campaign Resource. The 14th-16th of January 2011 will be the date of The Broken of Britain’s blogswarm, entitled “One Month Before Heartbreak”. The DLA reform consultation end on 14th February, Valentine’s Day, as BendyGirl explains. Between the 14th and 16th, we hope that thousands of people will write – preferably on a disability-related topic – supporting The Broken of Britain and our campaign. If you want to go further, phone your constituency office and ask for a face-to-face meeting with your MP so that you can tell them why they should oppose DLA reform.

NB: Rosemary O'Neill of CarerWatch has another idea for campaigning. If you are unable to protest outside of your home, get your MP to come to you! Phone your constituency office and try to get your MP to visit you at home. The 11th of January is the last date before the DLA reorm consultation closes, but you could ask for a home visit on any date up to then if the 11th isn't possible. MPs are all off from next week until the 10th of January so give them a call at their office to arrange something. Remember, you have a right to see your MP, and if you are not able to make it to see them, they should come to you. When they d visit, sit them down with a cup of tea and tell them your fears of losing DLA.

Friday, 17 December 2010

Announcing "One Month Before Heartbreak"

I’ve been thinking about things that we can do to raise awareness of The Broken of Britain and our cause. This post is to announce our newest venture.
One Month Before Heartbreak
A Broken of Britain
14th – 16th January 2011

What is it?
It’s something a bit similar to Blogging Against Disablism Day (BADD). Although I will run this yearly if I need to, I’m really hoping not to need to. Basically it’s people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.

Why One Month Before Heartbreak?
The consultation that’s currently ongoing about DLA reform ends on 14th February 2011. Which is Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.

What do I do?
Basically, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific.
Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want!
I plan to make space available on my own blog to anyone that doesn’t have somewhere to share and wants it.

Who can take part?
Anyone. You don’t need to be disabled or a carer or know a disabled person to take part. Nor do you need to live in the UK or be British. For our campaign and especially for this event to be successful we need to get this out to the wider community, including the international disabled community and the non disabled community.

What can I do to help?
Post on your blog, twitter, Facebook, any website you go on about this event. We need to people to know it’s happening. And keep doing so until the date comes. Use the #BofB hashtag on twitter.

I have a more concise version of this announcement people can repost if they wish. Comment here if you want it or let me know where you think it should be reposted.

Take part if you feel able. This event runs over three days in the hopes that more people will be able to contribute than if it was tied to a single day. It’s not necessary to participate each day although you can if you wish.
If you spot something to do with One Month Before Heartbreak that you like, tell the person who wrote or otherwise made it. Who doesn’t love feedback?
Equally if you spot something you like share the link so others see it.
More will be posted about this along with some other ideas on how to take part as we get closer to the time. Please let me know of any suggestions or ideas you have.

Language is important. However people have very different ideas about what is and isn’t acceptable. And they have their reasons for it. For example in some areas “disabled people” is acceptable but in others “people with disabilities” is considered more appropriate. Please respect that everyone has a choice. The Goldfish, creator of BADD, has given me permission to link to her Language of Disability Post which explains more about this.

And Finally…
Please don’t feel any pressure to take part or do more than you’re able to. I want people to stay safe and enjoy this!

Don’t forget the date!
One Month Before Heartbreak
A Broken of Britain
14th – 16th January 2011

Friendly Neighbourhood Grammar Nazi's Story

I was born with a connective tissue disorder called Ehlers-Danlos
Syndrome. I also have multiple secondary conditions - Fibromyalgia,
Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome,
Depression, Social Anxiety, and possible but undiagnosed ADHD-PI and
Aspergers. The EDS was a recessive gene in my family and had not been
seen for two generations. The last person to have it was my paternal
great-grandmother, who was undiagnosed until it was too late. As a
result, nobody recognised the symptoms that both me and my sister were
showing practically from birth.

We were clumsy, we had late (physical) developmental milestones, we
were constantly covered in bruises and scrapes and scars and had no
idea how we got each of them as they were so common. We were in pain
but unable to express where or why. When everything hurts, it's
difficult to give specifics and when you don't understand that
subluxations (partial dislocations) exist, all you know is that it
hurts and feels 'wrong'. When children give such vague answers people
assume they're making it up for attention. We were told over and over
that everybody gets aches and pains and it was perfectly normal. When
we didn't want to do things that the other kids did (running and
playing games of tag etc) we were told that we were being lazy and

These things were drilled into me from such a young age that I
believed them. I pushed myself past my limits trying to be 'normal'
and do 'normal' things. When I reached puberty my health dropped
dramatically due to the extra stresses on my body. The pain grew and
my cognitive functions began to slip. I was being abused at home by my
mother and bullied at school. Every authoritative figure I tried to
speak out to agreed with all the previous ones - I was lazy,
antisociable, rebellious and awkward. I had an 'attitude'. I could no
longer concentrate on my work. I was depressed and in chronic pain.
Every moment of every day was a struggle for me. I lost the
scholarship I had at one of the top private schools in the country as
I could not bring myself to concentrate any longer. I have always
loved to learn, I have always had a thirst for knowledge that has
never been quenched, and yet when I could no longer do my schoolwork
and I reached out to ask for help - I was just being lazy. I wasn't
trying hard enough. They knew I could do better if I just tried. Why
was I being so awkward? Why did I have to turn into such a rebellious

I finally got a doctor to listen to me. But as a young female with
obvious mental health problems he diagnosed me with depression and
stress, writing off all my physical symptoms as aspects of these. He
gave me antidepressants and sleeping pills and sent me on my way.
Neither of those did anything for me but he continued to insist that
all my problems stemmed from stress and depression and piled more
pills on me. He also gave me a note to give to my teachers to get me
out of any trouble I might get in from not doing homework etc. The
first (and only) teacher I showed it to screamed in my face that I had
no idea what it was like to be stressed. She was a TEACHER. SHE knew

My health continued to deteriorate. Some days I was in so much pain
and so exhausted that I couldn't get out of bed. I played 'acute' sick
to get out of school. Nobody ever believed me. I hated myself for
doing it - I loved school, but was too 'lazy' to get up and go.

When I was at school, I would hide in the toilets to get out of having
to do PE. I would spent the entire lesson crying quietly to myself in
a cubicle, hating myself and feeling so ashamed for not being able to
do it. When I was caught and forced to do it, they tried to make me
run laps as a punishment for skipping the class. I'd sublux an ankle,
without realising what I was doing, try to run on it, but fall flat on
my face. My teacher dragged me up and pushed me forwards. No matter
how many times I fell, he would keep doing it as he 'knew' that I was
only faking it and he wouldn't tolerate my laziness.

I had no social life. Everyone at school laughed at me for faking
illnesses, for having so many days off sick. They made fun of me when
I tried to join in PE. They snickered behind my back during tests when
I was trying so hard to think straight that I was practically in
tears. They poked me, hard, and due to Fibromyalgia even soft pokes
hurt, then laughed at me when I screamed in pain. I was so
melodramatic, they said. They threw things at me, which left me in
tears and with huge bruises. I tried to show people the bruises, but
they insisted that I was such an attentionseeking liar that I'd
bruised myself to try to get others in trouble.

In short, my childhood and teenage life was hell. My mother abused me
at home. I was bullied at school. I had no friends and nowhere else to
go. I would lock myself in my room by sitting with my back against the
door so that my mother couldn't come in and get me.

At 16 years old, I moved out. As soon as I was legally able. I was too
young to claim any benefits. I was told that if I was still living at
home at 16 I could claim JSA, but having moved out I wasn't entitled
to it until 18. I had to work full time to afford rent. My body
couldn't take it. I had as many days off sick as I had at school and
that was too much to be able to hold down a job. I bounced from one
meaningless job to another, under constant emotional and mental stress
of not being able to afford rent and being terrified that I would have
to go back to the mother and enduring more years of abuse.

I had online friends at this time as I had discovered the joys of the
internet and how much friendlier people were when they didn't see you
faking your way out of physical jobs on a daily basis. I met up with
one of these friends in real life and we ended up falling in love
after that. He knew about my situation trying to make rent, but not
about any of my physical problems. I was still far too ashamed about
my own laziness and the lies I came up with so I wouldn't have to do

He convinced his mother to let me move in with them for a VERY low
rent and when he made me the offer I happily accepted. It meant moving
about an hour and a half away from where I was but I was giddy with
excitement nonetheless. It took me a while to find a job in my new
town as I had no 'local experience' and a pretty poor work history of
jobs changing every couple of months. And no qualifications other than
very low GCSE grades. But my boyfriend was happy to continue paying
rent for me out of the JSA he was claiming.

A while later we moved out of his parent's house into a nearby flat.
My boyfriend had a full time job and I was using all my energy to keep
the house clean and applying for roughly 20 jobs a day. Whatever I
could find that I might possibly have qualifications and experience
for, I applied for. Anything that didn't require any experience or
qualifications, I applied for. It still took me over a year to find a
job. By that time I was 18 and would have been eligible to apply for
benefits, but I was adamant that I wasn't THAT lazy and when I was
offered a data entry job I took it. It only lasted a few months as my
typing skills were too good. I was too fast at it and ran out of work
for them to do. I had been clearing up an eight-month backlog.

I found another job fairly quickly - as an audio typist/medical
secretary working in mental health. I was quite pleased with this as
it was an NHS job, had good prospects for promotion and a career etc.
I'd started to feel twinges in my wrists and fingers when typing for
too long, and dealing with 'writer's cramp' but I figured this was
fairly normal. I walked the half hour to my job and back every day,
despite how much it pained me to do so. I kept telling myself that it
was exercise, and like everybody kept telling me - I was just lazy and
if I exercised more things wouldn't hurt. I kept telling myself this
over the next few months as the daily walks got more painful and the
typing left me unable to use my hands for the rest of the night after
I came home from work. Surely I would get my second wind soon. This
would start getting easier.

I started longing for the weekends - not so that I could go out
drinking with my friends as everybody else my age was doing, but so
that I could spend two whole days in bed without having to move.

I took more and more days off sick from work so that I could lie in
bed and rest. My life consisted of working and resting, there was
nothing else. My boyfriend had to force me to eat in the evenings
because if I was left to my own devices I wouldn't bother - it was too
much effort and too painful to bother with.

I was in such agony from my wrists, hands and fingers that I had to
take breaks every five minutes at work. It was five minutes of typing,
ten minutes of resting, repeat all day long. My work started to suffer
but I had been so good at my job that I was ahead of myself anyway,
nobody really noticed the drop.

I kept telling myself that it would get better and I just had to work
through this. That everybody else was working full-time without
anywhere near as many breaks as me, AND managing to do housework and
have a social life. That if I couldn't even work full-time without
taking at least one day off sick a week then there was something wrong
with me; I WAS as lazy as everybody kept telling me I was.

It didn't click that maybe my problems were more physical until my
boyfriend tried to hold my hand once, on a bus full of people, and I
burst into tears because the act of holding hands was hurting me so
much that I could no longer wear my happy face even in public.

I went to the doctor at that point, who started investigations and
advised me to stop working. I couldn't bear the thought of being even
lazier than this and having to claim benefits, so I continued working
despite the agony for another three months. By that point I'd done so
much damage to my wrists that they will never be the same again. Us
EDSers don't heal very well. I can still type to some extent but I
need to take far too many breaks for far too little writing and what
little I do stops me being able to do any other kind of work.

All of my joints hurt. All of my joints sublux and dislocate. I can't
walk very far, on days when I can walk at all. There are very, very
few activities I can do with bad wrists. When 'normal' people injure a
joint they rely on other joints to over-compensate. My upper body
cannot compensate for my lower body's problems. I can't use a cane or
crutches or self-propel in a wheelchair because of my wrists. The NHS
won't give me a power chair. I'm housebound until someone has the time
to push me around in my manual chair.

My cognitive problems and inability to concentrate coupled with social
anxiety and trouble communicating mean that claiming benefits is a
harrowing, terrifying ordeal for me. The physical problem of not being
able to fill in the forms myself is the least of my problems. The
errors in the system of lost claims and bank account numbers and
countless problems where they don't even know what the problem is
overwhelm me. I'm unable to use a phone without crying and having
panic attacks most of the time. Anytime anybody questions me about my
abilities I break down - it's so unbelievably hard not to scream that
I'm a lazy piece of scrounging scum. I put off doing things that need
doing because I don't want to cope with the tears and the break downs.
I then forget that they even need doing until the next time I dare to
look at my bank account and break down worrying and crying about how
to pay rent and buy food.

I am currently on low rate care and no mobility of DLA, despite
needing help with pretty much all my daily activities and not being
able to walk most days and only as far as the corner shop on the days
when I can (pointless, as I can't carry any groceries home). I tried
to claim ESA but failed their medical assessment with only 9 out of 15
points. I had a look at the points system online and by my
calculations I have a combined total of 72 points from both physical
and mental problems but they would only give me 9 points for not being
able to use a pen. I'm trying to claim housing benefit but am
wallowing in bureaucratic nonsense that I don't know how to handle.

I am living in poverty. I have always lived in poverty except for that
one year when both my boyfriend and I were working full-time. That
year was such a living nightmare for me that I couldn't even enjoy the
financial benefits of being able to afford take-away when I couldn't
manage to make myself food. I'd rather not eat but live in a world
that consists of slightly more than just pain and sleep.

Tuesday, 14 December 2010

Template Letter, PCC Complaint re: Jody McIntyre

Some of you have inquired about a possible template letter for registering a Complaint with the PCC about the Littlejohn Jody McIntyre feaure in the Daily Mai. You can use the one below as a guide.

PCC Complaints can be filed online here:

 Please note:
  • You are allowed to designate 1 email address to be forwarded a copy of your complaint in full. Please be aware that you will *only* receive a general acknowledgment to your own email, so try copying yourself (or a friend who can forward it to you) to have a full record.
  • You can also include the scanned image below from the paper itself (referred to in the letter):


You are required to cite which  clause or clauses of the PCC Editor's Code are relevant to your complaint. The key two are as follows:

PCC's Editors' Code, clauses 5i + 12i.  
The Code can be found here:

I am including details from all pertinent fields which require an answer.

For further reference:

When Frankie Boyle makes jokes about disabled people, the Mail complains. When Littlejohn does it, the Mail prints it - @MinorityThought


CCForm : <insert the email address to be copied>

Publication : Daily Mail

Publication Date : 14/12/2010

Headline : I want to go to the demo...

Hard copy : Yes

Online : Yes

Both : Yes

Link to article :

Explanation :

I wish to formally file a complaint in reference to a Richard Littlejohn article and its accompanying cartoon illustration about a disabled protester, Jody McIntyre. The article in question appeared in today's Daily Mail in print and online as cited above. Attached for your reference is a scan of this material.

Richard Littlejohn and the Daily Mail are in breach of PCC's Editors' Code, clauses 5i + 12i. The article was discriminatory in tone and context. Furthermore, the journalist and the news organisation were insensitive and disrespectful towards the brutality of Mr. Jody McIntyre, himself a journalist and blogger, at the hands of the Metropolitan Police. Mr. Littlejohn and his employers display an unbalanced and wholly willful ignorance and inconsideration of the factual realities of the case.

This article is further evidence of the continued scapegoating and malicious attitude towards the Disabled in general by this publication.

Respectfully yours,

Lisa J. Ellwood

Clauses : PCC's Editors' Code, clauses 5i + 12i. 

Template Letter in Response to ILF

This is my letter to the Minister for Disabled People in response to the shutting down of ILF. I encourage readers to copy, paste, edit and send their own. Campaigning on this is difficult as there is little information available as yet. When there is, The Broken of Britain will respond. For now, the priority is the campaign to stop DLA reform.

Maria Miller MP
Parliamentary Under Secretary of State and Minister for Disabled People
Department for Work and Pensions
1st Floor
Caxton House
Tothill Street

Dear Maria Miller,

Re: Shutting down the Independent Living Fund

It is only a few short days since I last wrote to you, as Minister for Disabled People, urging you to recall the Public Consultation on Disability Living Allowance (DLA) reform. I find myself writing again with regards to the Independent Living Fund (ILF), which appears to be the Coalition Government’s latest target in its war on disabled people.

You released a statement yesterday which announced that ILF would cease to exist in 2015. Many in the disabled community saw this coming, after the Fund was frozen to new applications for this year, but had hoped that you would see reason. Your statement is difficult to criticize fully because there is so little information on your plans except for vague promises of consultation in 2011. This lack of clarity has sent ILF claimants, their carers and their friends into panic. How is it possible for us to correspond with you when you fail to clarify your intentions?

In the statement you claim that “the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable.” There appears to be no justification of this claim. The purpose of the ILF was to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative of residential care. Given the expense of residential care, surely making it possible for 21,000 people to live independently is financially sustainable and eminently sensible.

The statement suggests that you will move “existing users of the ILF in to a social care system based on the principles of personalised budgets.” This means that the financial burden of care for those supported by the ILF will be foisted upon local authorities, who will set their own eligibility criteria and perform their own assessments of care needs. Levels of care provided will then decrease dramatically for those formerly supported by the ILF, and for those who would have applied for ILF in the past. This will mean that many will no longer be able to live independently and have to enter residential care, at far greater cost to the state. For others it will mean that living independently is no longer possible, with the families of these people having to meet their care needs.

The Ministerial Statement is difficult to critique further because of the lack of detail. It is fair that you should issue an immediate statement providing this detail. I also demand to see the DWP’s reasoning for the claim that ILF is “financially unsustainable”, and all documentation on which this claim was based. It appears that the Coalition Government have decided to make these changes without knowing what system will replace ILF, thus making decisions which affect 21,000 lives without due care and proper planning. I wish to receive an answer that confirms or denies this. If you confirm that ILF was shut down without firm plans for the future, I suggest that you issue a personal statement apologizing to the ILF caseload for causing doubt and panic amongst them. If you deny that no plans were made, I demand a copy of this documentation be published on the DWP website.

I am sure that DWP have completed an Impact Assessment an an Equality Impact Assessment with regards to this decision, and I request that both are made available to the public. I expect a prompt and detailed reply. A copy is being sent to the Secretary of State and to my constituency MP, Hywel Williams.

Yours sincerely,

Rhydian Fôn James

cc: Hywel Williams MP (Caernarfon); The Rt. Hon. Iain Duncan Smith MP , Secretary of State for Work and Pensions

Ned's Story

My son has complex care needs and has profound learning and severe physical disabilities.  As he's non verbal, I have to do this on his behalf.  Part of the time he is in registered care and receives Mobility Allowance.  He uses this to fund his wheelchair adapted vehicle - for hospital visits, coming back to us and social visits.  Because he is officially classed as in a 'nursing home' this is one of the few benefits he is eligible for - no Income Support etc. (we've checked all this out with welfare rights).  Mobility Allowance will be withdrawn from him under the governments Spending Review.  At the same time, the local council has withdrawn the 'Dial a Ride' scheme for lack of funds, so he will effectively be under house arrest as a result.  We've also just been told that because his existing care package is expensive it is being reviewed - it's expensive because he is very disabled - oxygen, gastrostomy, nursing care etc..

These cuts are real and affect real people, some of whom can't argue back themselves.  I do my own blog at

Monday, 13 December 2010

Ministerial Statement on ILF

There is a lot of fear out there over the future of ILF, which supports severely disaabled people to live independently. ILF ceases to exist after 2015 as the fund is "financially unsustainable". ILF supports 21,000 people to live independently, some of them so severely disabled that they would otherwise end up in care homes. I have friends on ILF who are in impressive and highly-[aid work - how can it make sense to remove the support allowing them to work?

The problem is that the Ministerial Statement is unclear about what happens next, promising only a consultation in 2011. The loosely related DWP press release on the new Right to Control is almost opaque, and it will take some time for people to work out what they mean. On the face of it, ILF funding will be combined with all the other pots of money for disabled people - AtW, DFG, and so forth.

The uncertainty makes it hard to know what to protest! The Broken of Britain will post a template letter to the Minister for Disabled People as soon as possible, and we will respond fully when the situation becomes clearer. For now, support The Broken of Britain petition against DLA reform and Write-in Campaign to Stop #DLA Reform

Sam's Story

A brief background first, just so you know where I am with all this. I'm a 24 y/o guy with EDSIII, Autonomic Dysfunction, (unconfirmed) Marfan Syndrome (family history of it, I need more tests done), Anxiety and Bipolar II. All of these diagnoses came pretty quick one after the other in the space of about 18 months from July last year. I've always been one of those accident prone, clumsy, forgetful people. When I was growing up, it was always "growing pains" or "hypochondriac" but my body (from neck to lower back, chest, arms, legs, etc) is covered in scars. Although I have scars everywhere, my skin is still incredibly stretchy, soft, and smooth, like a silky bread dough. My condition has been unknown to me for most of my life, I've just had to get on with everything and struggle which made me very stubborn. However, since I hit 20/21, I've been deteriorating rapidly and haven't been able to physically fight it like I have been. Now I'm 24, I'm very close to giving up and letting it win.

My ordeal trying to get DLA has been a nightmare. Since I was 9 I've been using crutches as I had really weak ankles (dislocations) as well as a fused talus joint in my right foot. I have had virtually non-existent mobility for about 15 years, but I refuse to use a wheelchair as they cost too much for me and I don't want to be restricted further. But as it was only a "unresolved injury due to flat feet and weak ankles" there was nothing I could do. With the diagnoses I got last year, I made the jump to claim for DLA. After help from the welfare department at my district council, CAB and my doctors, even after tribunal I am only eligible for lower care, which personally I find atrocious and as though I've had dirt kicked in my face.

I have worked since I was 16, on and off for the local government and have volunteered for my local community (as well as finding time for A levels and MCAS qualifications). I have been self-employed (briefly) as a graphic designer when I was 18-20, however my health got the better of me and had to stop, as there was too much stress and I was physically getting worse. I went back to the local gov offices doing temp jobs until I finally got a permanent position with the County Council as a Pensions Officer, in the support team helping with systems administration for the department. I have been there about 2 and half years now and I like the job (although my work load had to be reduced due to my illnesses, mood fluctuations, etc) but unfortunately I'm still deteriorating (knees, back, neck and hands mainly) and I have been signed off long term sick. That's my history in brief, my EDS, AD and preliminary Marfans diagnoses were done by Prof Rodney Grahame at UCL with my Anxiety and Bipolar II, this september by Dr Bansal at the local psychiatric centre here in town (after many cancellations and referrals over the space of about 5 years).

I have been off sick now nearly half a year and obviously as my SSP ran out many moons ago (thanks to my abysmal sickness record) I have been claiming ESA. Last month, I think it was 11th October, I had a medical with ATOS. This medical was terrible, which consisted of a "doctor" sitting at a desk, tapping away slowly at a computer. She did some very strange tests to see how I can move (which, as you know from your own experiences, is extreme!) however, I was forced to perform certain things or be marked as "refusal to co-operate" this included bending at the knees and reaching above my head. Both actions caused me great discomfort (extreme pain from the knees, as they're so loose now they have no strength in them at all. As well as tachycardia from reaching thanks to AD) and when I got home, a panic attack. However, on receipt of my results, I scored 0. So even with crutches I can "comfortably walk 200m", with my anxiety and bipolar "cope with difficult and stressful situations and meeting new people", but I could go line by line through the report with how it's wrong. The sad thing is, I had already anticipated this from what I had heard previously about ATOS.

The most shocking thing I found, was when I was on the phone to DWP to ask about appealing, when I explained "I have received my ATOS medical report" the lady on the end of the phone asked for my address to send out the appeal forms without me asking for them. My current receipt of ESA is now unknown (I should be receiving it this monday, but according to the letter, it's been stopped) however, the lady on the phone at DWP said everything was still fine, so I'm confused. 

I'm now at a point in time where I'll be at the Royal National Orthopaedic Hospital, Stanmore, for most of December (from 6th to 24th) with only DLA care component as my source of income as my wages have run out and I obviously can't rely on ESA. Luckily, I live with my parents still (seeing as there's a lot of things I can't do anymore, I need someone with me pretty much all the time), however, as my Dad is out of work thanks to sciatica and my mum is, like me a community volunteer (she also has to take up my portion now as well as I'm too ill) we have practically nothing as far as income as all the benefits Dad receives go toward rent and council tax (and the benefits are due to go down, if I understand things right). So we're truly stuck and all these tests and hoops I have to jump through to prove that I am ill are wearing me down. My Bipolar feels more like Major Depression as I haven't had a mania episode for a while now.

The main problem is, I'm very cynical and very sarcastic, so I tend not to let others know that things are as bad as they are and everything I say seems to be taken as a joke. This whole ordeal which has been non-stop now for as long as I can remember is making me feel completely worthless and as though I don't deserve to live in this country. I can just about cope living day to day with my problems now, I can't consider working (no matter how many times I'm told I'm "too young to stop working" like that'll magically change things) let alone have hobbies or things to enjoy and even if I did, I can't afford them now on £75.80 (or whatever it is now) a month. Luckily, I have been saving here and there, but it won't last long seeing as I have a credit card to pay off...

Sunday, 12 December 2010

Stop DLA Reform! - Campaign Resource

This is your one-stop campaign resource to fight the proposed DLA Reforms. The internet saw many disabled people and groups responding, summed up neatly at Where's the Benefit. Remember, the reforms are just proposals at the moment and we can fight them even before the consultation closes. There are estimated to be 11 million disabled people in the UK, and, if we all speak up at once, they will hear us! Here are 4 easy steps for speaking up:

Step 1 - Write to Maria Miller MP, Minister for Disabled People

Step 2 - Write to your MP

Step 3 - E-mail the Prime Minister

Step 4 - Sign the petition calling on the Minister for Disabled People to Recall the Public Consultation here.

The links take you to letter templates and petitions. Happy campaigning!

Benefits - a lifestyle choice?

Great film from Poverty Alliance

Saturday, 11 December 2010

Step 3 of the Write-in Campaign to Stop DLA Reform - Write to the PM

Step 3 is to write to the PM. You can do this on which has a form to do so. Unfortunately, the form is 1000 characters only, so I've produced a cut down message. Other steps are to contact members of the Cabinet and the Shadow Cabinet by changing one of the other templates posted. You can contact them at their addresses - only the PM has the webform.

Dear Prime Minister,

This e-mail is for your information. I will contact other Ministers in separately.

I am writing to urge you to instruct the Minister for Disabled People to recall the Public Consultation on Disability Living Allowance (DLA) reform, and to cease work on reform of this benefit, due to serious flaws in the consultation paper. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people. Read a fuller argument at

I strongly advise you withdraw these policies. I hope that you will not construe this as a threat, but I suggest that you remember that there are 11 million disabled people in the UK. Our voting intentions will be strongly influenced by the fate of DLA. Remember also that the Conservatives fought the election on a pledge to protect DLA.

Step 1 of the Write-in Campaign to Stop DLA Reform Revisited - Write to Maria Miller MP

Some constructive criticism has led me to revisit the letter to Maria Miller MP, producing a simpler template letter as a distilled version of the earlier one. The big letter is still online -and you are all welcome to use it - but below is a simple version for you to edit and post and e-mail. Remember to cc: your MP:

Maria Miller MP
Parliamentary Under Secretary of State and Minister for Disabled People
Department for Work and Pensions
1st Floor
Caxton House
Tothill Street

Dear Maria Miller,

Re: Disability Living Allowance reform

I am writing to urge you, as Minister for Disabled People, to recall the Public Consultation on Disability Living Allowance (DLA) reform, and to cease work on reform of this benefit, due to serious flaws in the consultation paper. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

Your case for reform has been criticized, and then completely demolished, by the various disability rights groups fighting reform. They accuse the DWP of building their argument without sufficient evidence, and I am inclined to agree. The claims that DLA can act as a barrier to work, in particular, are robustly questioned. Questions are also raised concerning the accuracy of the representation of supporting data.

Most devastating to your case for reform is the critique of proposed amendments, leading one to ask whether augmenting DLA might not be a better, cheaper way of improving employment opportunities, rather than launching an entirely new benefit. It would seem that the costs of such rebranding are only justified when savings are made by cutting the DLA caseload by 20%. This figure is, in and of itself, questionable – how is it possible to know that this many people can be removed?

The Personal Independence Payment (PIP) appears to be a case of cuts dressed as positive reform. Disability rights groups and charities have uniformly condemned the proposals, warning of dire consequences. The list of those affected includes: people who are mobile with aids; people with disabilities so severe that they are unable to be very active; care home residents; those who receive local authority care packages. Most other disabled people will suffer through needless reassessments upon the introduction of PIP, and re-testing every few years even when a condition cannot be treated.

There is a strong feeling amongst people with disabilities that the Coalition Government have declared war on us, with a continual ratcheting of pressure on us since the Emergency Budget in June 2010. Announcements on Employment and Support Allowance, Incapacity Benefit, and Disability Living Allowance have made us feel that the Government is scapegoating us and removing the support on which we depend. Iain Duncan-Smith’s comments to The Sun newspaper [01/12/2010) suggesting that Incapacity Benefit claimants were partly to blame for a large fiscal deficit caused by a recession, a bail-out of the banks and quantitative easing. The only way that you can convince people with disabilities that you are not hostile towards us is to halt the current process DLA Reform. Whilst there may be ways to improve DLA, they do not involve replacing it with a new benefit, and neither do they involve removing anyone from the claimant caseload.

I am sending a copy of this by post, and expect your prompt personal reply with distinct reference to each and every point I have made. I am forwarding copies to the Secretary of State for Work and Pensions. I am also forwarding this letter to [your MP] who represents my constituency. I am sure my MP will read it with great interest, and I know that he will wish to raise a number of searching Parliamentary questions regarding the conduct of DWP during the compilation of the DLA reform consultation paper. I await your reply.

Yours sincerely,

[your name]

cc: [your MP]

Step 2 of the Write-in Campaign to Stop DLA Reform - Write to Your MP

When you send a letter to Maria Miller MP, the Minister for Disabled People, with a copy to your MP, it is a good idea to send a separate letter to your MP. Some readers will be experienced at this kind of thing, but many of you may be new to campaigning or may not have the time or energy (spoons) to write. For that reason, we have designed a template letter. You are welcome to modify it or just send as is, substituting your MP's name of course! You can find names and addresses at Get writing:

Dear [your MP],

Re: Disability Living Allowance reform

I write to express my concern about the proposed reforms to DLA. A Public Consultation was launched by DWP on the 6th of December on the subject of these reforms, the scale of which surprised many disability rights campaigners. After all, the Conservatives fought the election on a pledge to retain DLA, and seemed to broadly maintain this stance in their October 2010 conference – yet we now learn that DLA will be abolished in 2013-14, and replaced by the new Personal Independence Payment (PIP).

The case for drastic reform of the DLA has not been made, and the reasoning given in the consultation paper is weak and based on flawed evidence, as argued in this article by disability rights group The Broken of Britain. Moreover, the proposals for the new benefit are harsh, and disability groups and charities have rushed to condemn the proposals.

I urge you to read all the material on the internet – but ignored by the mainstream media in the midst of student protests – and to oppose these changes which are cuts dressed up as positive reforms. It is important that these cuts face immediate parliamentary scrutiny and that this scrutiny continues whilst parliament is in recess.

Yours sincerely,

[your name]
Elaine's message to the Minister for Disability - YouTube Video

"been thinking about writing a letter after the declaration the disabled are not sustainable...and the fact she doesn't know what the impact will be. They don't seem to have a clue of the real misery it has caused many people, the suicidal feelings, attempts or planning. The abject misery of living in poverty with ill health and the fact people learn to laugh at it in their way of coping with the awfulness of it. I learnt to laugh about my acne and the nearly dying stuff when I first became too ill to properly function most of the time.

I've learnt to laugh about my predicaments the malnutrition, the rapes, the feeling abused by the system, for me to be able to not go totally demoralised and in need of ending my misery. I can compose myself takes a lot out of me and i have to laze about for a long time after, relaxing through the pain so I don't have to take medications that further challenge my body to function well enough to self care, psychologically at times it has made me wonder if the struggle is worth it. Although I have found ways through meditation to find bliss and let go of the pain that my body is in and my mind. I have kept positive and I am proud that I have survived this. Poverty is indeed a violent act to mete out on a person....especially when that person has no resource to fend for themselves enough to sustain themselves, not through lack of trying but through lack of adequate care when they are vulnerable.

I've just shared this on facebook it is the early hours of Thursday 9th December, 2010. 02.50 to be precise I have some roving pain and am going to try to sleep now. I have been able to a little better the last couple of nights..I am learning not to keep focus on things I can't do anything about, no matter how unpleasant or difficult they are...I guess being raped and dealing with the emotional backlash of that has been like training to get through this....I don't manage so well sometimes..."

Kate's writing a book about the cuts, can you help?

Dear BofB'ers, we have been contacted by a journalist who is writing a book about the coalition's cuts. The strongest argument we have against the cuts is to publicise the fact they affect all of us, not the scroungers they are supposedly targeted towards. If you are willing to be interviewed for Kate's book please email us at and we'll forward your details to Kate. 
Thanks, Kaliya 

From Kate;

Here is an outline of my project:

I'll be spending December and January travelling around the UK and
interviewing people for a book that I'm writing about the coalition
government's proposed public
sector funding cuts.

I generally write case studies - so, interview-based pieces where
people speak their situations for themselves, following the sort of
format of some of the pieces I've written (I've pasted links to some
of my recent work below). The book will be a collection of these
stories. I'll be publishing some online along the way as well, with
video where that's appropriate. I'll also be travelling with a

So far, I've arranged interviews with Sure Start users, people who use
some housing support, people who are involved in education and the NHS
- quite a broad range of people across income groups and in different
parts of the country. My aim is to return to people later next year to
see how they're coming along and to do follow-up pieces from there.

I'd be more than happy to come and talk to anyone in your group who
would like to be involved, or who may just want further information in
the first instance, so please feel free to circulate this.

Best regards,


Recent Guardian contributions:

Friday, 10 December 2010

Write-in Campaign to Stop DLA Reform

This is a link to my letter to Maria Miller, Minister for Disabled People, on the subject of DLA reform. It's too big to post on here, but all disability blogs and sites are welcome to take it and run with it. Anybody wanting to send their own letter is welcome to snip bits from mine and paste it in their own letter. The students are getting all the attention and DLA reform is being brushed under the rug. Let's get the Minister for Disabled People, and our MPs, snowed in by letters so that we are not forgotten.

Just remember to put your own address on it, and cc: to your own MP. This is a very long letter - be warned - at 5 A4 pages. Some of the criticisms are personal to me depending on my degree in mathematics, so you may want to replace those points with your own. My own copy has just been e-mailed last night and posted this morning. If possible, I suggest that you post and e-mail too. Some MPs are very good at reading e-mails, some aren't, and Government ministers are awful. Remember to write to your MP too - I will put up a template for that shortly - and send them a copy of the letter you send to Maria Miller.

Robin's submission to the DWP

I am very interested in how the changes will affect me, and people like me that have some need for support, but aren't very obviously (visibily) disabled, and have changed our lives to work within limitations.

I currently work three days a week, and DLA enables me to work part-time. I can't work full time because my impairment leaves me fatigued, and I need the four days of not working to balance rest and housework. Were I to not be on DLA I wouldn't be able to afford to work part time.

When I manage my energy levels, I need little support, but as soon as I use up my energy supply I cease to be able to care for myself, lose the capacity for speech, and struggle to leave my flat.

The support I require (and get) is mostly informal, from friends. I also use my DLA to pay for things like proper food (so I stay healthy), and odd costs. For example, I am Dyspraxic, and seem to wear out clothes very quickly, possibly because I bash into thing / rub against surfaces / trip over more often than a non-disabled person might. Because of sensory sensitivity I am very particular about the textures of clothes I wear. This means it can be hard for me to find clothes that are sturdy and comfortable, and I have a more limited range to choose from meaning I often can't find clothes in places like Primark.

I find point 19 on page 10 "DLA is widely perceived to be an out-of-work benefit and receiving it appears to reduce the likelihood of being in employment, even after allowing for the impact of health conditions or impairments." a rediculous reason to be changing a benefit. If public perception of a benefit is wrong, you work to change the perception, not the benefit! The reason many people see it as an out of work benefit (which, disgustingly, seemed to include some politicians) is the media reports it as such, and no one seems to challenge that.

DLA means people like me CAN work. It supports us in work, and my being in work means I need more support than if I were sitting at home all day.

As for "There is evidence that people who receive DLA have lower work expectations."  this isn't because of DLA, it's because of the challenges faced when seeking work as a disabled person! When I was looking for work it had to be local or involve a straight-forward journey of no more than an hour (ideally less), had to be part-time (three days a week maximum), not involve shift work, be in a small office with good acoustics, not involve a lot of "team work", and not require me to have a degree, as my impairment interfered with my ability to access a university education. I don't think these restrictions are atypical amongst disabled people, but work that meets our needs is hard to find.

I need to read the document in small chunks, and will email further comments as I get through it.

Thursday, 9 December 2010

Demolition Of The Case For DLA Reform

Maria Miller, Minister for Disabled People, should immediately recall the Public Consultation on Disability Living Allowance (DLA) reform, and cease work on reform of this benefit. This should be done because the reasons given for DLA reform are not robust, with little evidence to support the case for reform and, importantly, no independent academic research. The use of the word ‘little’ refers to the two pieces of internal DWP papers used as evidence to build the entire case for reform – a footnote for one reference appears twice on consecutive pages. Thus the case for reform falls apart upon even cursory examination. As such, the consultation questions are deeply skewed and any answers will be likely to support wholesale reform. This is both unfair and unwise, and will cause hardship for many disabled people.

The wildest claim to support reform is that ‘evidence suggests that DLA can also act as a barrier to work’. This passage is footnoted, referring to “Disability Living Allowance and work: Exploratory research and evidence review, 2010, DWP Research Report No. 648” (RR No.648). This report also finds that “he main factor affecting the employment rates of disabled people is their disability or health condition” and that “a larger than average proportion of DLA recipients also appears to be affected by the specific types of impairment that carry the greatest employment disadvantage for disabled people” – yet these findings are not reported in the consultation paper, thus skewing discussion.

In fact, though the report claims that there exists a “perception of disability permanently precluding work is prevalent among individuals with disabilities not already in employment”, there is no evidence cited in the report that suggests DLA could be a barrier to work. The section and all references to it in the consultation paper could be interpreted as an attempt to misdirect, and should be removed forthwith. Further, it should be noted that the consultation commits the statistical crime of confusing correlation with causation. Whilst RR No. 648 does provide evidence that low employment is correlated with claiming of DLA, this in no way implies that one causes the other.

It could be suggested that the lack of evidence pointing to a need for reform has meant that misdirection was used in an attempt to convince the public that DLA reform is necessary. In particular, the graphs presented as Figure 1 and 2, on page 8 of the consultation paper, used to show the DLA caseload increasing at an alarming rate, are flawed in many ways, not least in the fact that no baseline is established for when take-up of DLA by people with disabilities plateaued after its introduction in 1992/93. There are further issues regarding the number of Pensioners as the report ignores demographic trends to show that there is a dramatic increase in claims by people over State Pension age. This is particularly questionable since a Pensioners’ eligibility for DLA would usually depend on their receipt of DLA prior to this – otherwise, they would be eligible for Attendance Allowance. This is not made explicit in the consultation paper.

Figure 2 is also misleading as it could be read carelessly as showing that 8% of the population claim DLA. I am loath to interpret this as intentional misdirection but it is, at the very least, a sloppy drawing of graphs. Another example of sloppiness is the first sentence of paragraph 15 of the first chapter, on page 7 of the consultation paper, reading “In just eight years, the numbers receiving DLA has increased by 30 per cent.” This sentence is utterly meaningless and a misuse of statistics although, once again, I do not wish to interpret this negatively. Yet another example of the spurious use of statistics is Table 1 on Page 9 which presents the “Distribution of current caseload by rate combination”. This table appears between two paragraphs – 16 and 17 – arguing that the current system is too complex and the benefit is not understood. This is an odd, and potentially misleading, place for this data to be displayed.

Beyond misuse of statistics, sloppy presentation of data and lack of evidence, there are further points to be queried. Whilst RR No. 648 does give evidence that DLA is complex and not understood by all claimants, as suggested in paragraph 19 on page 10, this is surely grounds for improving the current system rather than expensively replacing it with an entirely new one. Likewise the assertion, in paragraph 18 of page 9, that there is no system to check that rewards remain correct. The statement that “Two-thirds of people currently on DLA have an indefinite award, which means that their award may continue for life without ever being checked to see if it still reflects their needs” is a rhetorical tautology. Indefinite awards are given to claimants with conditions that will not improve. Whilst it is not unreasonable that medical advances in the treatment of a certain condition should prompt re-evaluation of those cases, this could be achieved by augmenting DLA rather than replacing it.

The core argument of the consultation paper is that DLA is a benefit not fit for purpose. Paragraph 9 on page 6 of the consultation paper states that: “DLA is a benefit that provides a cash contribution towards the extra costs of needs arising from an impairment or health condition.” The arguments presented in paragraphs 14 and 15 of page 8, claiming that the benefit is not fit for purpose, do not touch upon the original purpose of DLA or offer any argument as to why it is failing to meet its original purpose. The information presented is that the DLA caseload and expenditure is a “lot more than was originally expected” and the aforementioned misuse of statistics on the increase in DLA claims. No arguments are presented as to why this means that DLA is not fit for purpose. The only way an argument can be construed is to look at the issue with a preconceived idea that there is an acceptable level of DLA claims prior to evaluating the health and impairment of claimants.

Finally, paragraph 2 betrays this preconception by stating: “We believe that now is the right time to reform DLA”, yet offers no qualification or reasoning for this belief. Paragraph 3 continues by saying that: “We must ensure that our resources are focused on those with the greatest need”, with no qualification or definition of the term “greatest need”. This could be pointed to as a suggestion that those with “lesser needs” will have to struggle unsupported with their impairment, and that the definition of needs is at the whim of the Secretary of State for Work and Pensions.

The arguments above demolish the case for reform presented in the consultation paper, dealing with each point made in the consultation paper. It raises serious questions about the competence of the Minister responsible and the Secretary of State that a consultation paper for reform has been based on such a shocking lack of evidence, preconceptions about benefit claims and abuse of accepted statistical methodology.

Rhydian Fôn James (mathematician and economist)

Ms H Cushion's Story

In June of this year the monitoring of 18 week NHS operations waiting list times was removed by the Coalition. It was revealed by the health professionals Pulse Magazine yesterday (source: ) that  by September, the number of patients waiting for more than 18 weeks for their operations had jumped by 15%. 

I have personal experience of this, having waited for 25 weeks for foot surgery, finally removing myself from the waiting list after finding another surgeon to treat me.  In March of this year I was diagnosed with Hallux Rigidus (arthritis of the big toe joint) at the Luton & Dunstable Hospital and added to their waiting list for a chilectomy (bone shave).  Just five weeks later I was offered the opportunity to have the operation at a private hospital as the waiting time was going to surpass the Government's 18 week target. In order to meet their targets I could be treated by the middle of May. By this time however there was serious doubt that the chilectomy would solve my mobility and pain problems so I advised the waiting list registrar that I had a re-assessment in June and she agreed to post-pone the private operation until the results were through. 
Having seen a consultant on the 1st of June who was happy for me to go ahead with the chilectomy, I again contacted the waiting list office.  Imagine my shock and dismay to be told that as the 18 week waiting time was not now crucial to them, following the removal of the monitoring, my private operation was no longer an option and I would remain on the waiting list indefinitely.  By this stage I had been waiting for 10 weeks and my pain was increasing and mobility decreasing.  In April I had been signed off sick from work as I could no longer perform my duties as a home carer.
From the middle of July I have spent most of my days in an armchair, unable now to stand or walk for more than a few minutes.  In September, following a second opinion consultation with a different surgeon, I removed myself from the waiting list, having waited for 25 weeks. I was now due to have both feet treated and as I had waited for so long, the damage had increased to such an extent that the operations would now include joint replacement and stabilisation.  However, following an administration error, I was discharged by the new surgeon!  Finally, last week I was back in surgeon B's chair being assessed.. I left his office with a date for surgery, X-Ray and pre-op appointments.  I will finally have my (now far more scary) operation on my right foot on 4th January, my now deteriorated left foot will be addressed once I am able to weight bear on my right. 
I am certain that had I been treated within 18 weeks, not only would the operations I am now facing not be as severe or expensive but I could also have kept my job (I was *released from my contract* in November).  Next year is filled with nervous anticipation for me, the recovery times for the surgery are long and painful and I am facing eviction from my home as my contract here terminates on the 28th of December.  Another legacy of the Coalition government's new policies is that I cannot rent privately again as I am now unemployed and the letting agent's insurance companies will no longer take a risk on benefits claimants. 
So please be upstanding for our Coalition.. well, you go ahead without me, as I cant. 
Note from BofB: We are committed to being a non party political campaign. We do not censor the stories sent in to us, the political opinions in this story are those of the author.

Wednesday, 8 December 2010

D's response to the DLA PIP reform paper

D says...

I’ve just read the DLA reform paper…

First thoughts were, why fix something that isn’t broken? According to the report, 9% of the population claim DLA. The Office Of disability Issues estimates that 10% of the population are disabled. I’m not sure if that 10% includes people like me (I’m guessing not, otherwise I imagine the number would potentially be higher. I’d perhaps argue that even though I’m covered by the DDA legally, I’m not ‘disabled’). So, assuming that it’s roughly correct the ‘right’ number of people seem to be claiming. There are people claiming who shouldn’t be, people trying to claim for ludicrous things and getting aggressive and abusive about it. However, this is a minority and is likely matched (if not exceeded by) the people who don’t claim, either because they don’t know about it or, (try telling the Daily Mail this) don’t want it.

Secondly, the way the paper is written makes it sound like all a claimant has to do is say they are disabled and they get a big fat handout. This is not the case. The vast majority of the paper states new measures that are already in place:

  • 6 month qualifying period? Yep
  • Assessment of what you can and can’t do? Yep
  • No process to check the award is correct? Yes there is, awards can be (and frequently are) fixed term (people can get better or learn to adjust- DLA is for needs arising from a disability, NOT from the disability itself)
  • Scored on a proxy of care needs and mobility needs (the report on one hand criticises this and on the other confirms PIP will have the same approach!)
  • Successful use of aids etc should be considered? Yes, DLA already does
  • Individuals responsible for reporting changes of circs? Yep

DLA isn’t inherently broken. Yes the process is difficult and the forms are a pain. But… it’s a self assessment benefit. The DWP need as much information as they can possibly gather. It needs to be accurate, it needs to be detailed and it needs to give a picture of what the person can do, can’t do, how they do things etc. I expect it is difficult to fill in and can be unpleasant but it’s necessary. The other way to do it is to have an assessment that seems to be deeply unpopular, costly and unnecessary.

The flip side of this is why do people find it difficult? Have DWP asked? Have they considered researching the issues and discussing possible solutions with disabled people and communication experts? Why not consider that?

Any money saved from not reforming the whole benefit but refining it could be spent where it is most needed, on educating people (both disabled and non disabled) that being disabled doesn’t make people useless or stupid; it just makes them approach tasks in a different way. So many people are amazed that a blind person can use a computer for example. Or that a blind person can navigate round a room or sit on their own without a sighted person following them round like they are made of glass. You can even talk to disabled people, you won’t catch their disability!

Some of the approaches of the reform are laudable- signposting people to further help and advise? Brilliant idea- why aren’t DWP doing it now?!  Making it more straight forward and easier to understand, yes yes yes! Again, this should be does as a routine lessons learned exercise as often as necessary.

With regard to being objective, then I imagine the process/assessment is. In fact its perhaps too impersonal. You are a file, a sheaf of paper. Do the DWP care that that sheaf of paper is sat on a shelf about to run out of payment? And its coming up to Christmas? And reducing or stopping that benefit impacts the other? No? Then why the hell not? This is a person’s life we are talking about!