A Toxic Day for ATOS at the Olympics?

ATOS will no doubt have been hoping to milk their association with the Olympics and their partnership with the International Paralympic Committee over the next few weeks, but is the milk about to curdle, could the Olympics turn ATOS into a toxic brand?

Later tonight, at 8PM on Channel 4, and at 8:30PM on BBC2, both Dispatches  and Panorama will be running exposes of the ATOS WCA process. We’ve already seen hints of what is to come with leaks from Dispatches showing ATOS trainers telling doctors that if they pass more than the approved amount of disabled people they will be subject to sanctions, and a DWP spokesperson claiming it is nonsense to say there are targets. Meanwhile Panorama has Professor Harrington, the independent reviewer of the WCA process admitting that it is failing disabled people and is not good enough.

Worse, Steve Hill’s case, featured on Panorama, and summarized here by bendygirl, raises the disturbing possibility that the WCA may have directly contributed to his death, by convincing a man with chronic heart failure and waiting for surgery that he was actually fit for work. Steve Hill died of a heart attack after vacuuming his car, 39 days after an ATOS doctor told him he was fit for work.

Meanwhile, a Parliamentary Early Day Motion, laid down by the superb John McDonnell, MP, one of disabled people's true friends in the Lower House, castigates ATOS for their treatment of disabled people, and the International Paralympic Committee for associating themselves with an openly disablist company by naming it as a partner. Never mind the active mistreatment of disabled people, ATOS can’t even be bothered to make most of their assessment centres actually accessible to disabled people. The IPC’s attitude when disabled people write to complain (and I have done that myself and seen their reply) is essentially that they don’t care as it isn’t their problem – I am curious as to which part of the Olympic spirit is reflected in telling disabled people you don’t care about the way they are treated by the company you are allowing to wrap itself in your flag?

83 MPs covering just about every party, though no Tories yet (quel surprise), have signed the EDM so far. Just think about that, 83 MPs condemning the International Paralympic Committee and its partner company on the first full day of the Olympics for the way disabled people are treated by them.

My own experiences of ATOS can be found here, and the long term effects it has had on me are discussed here.

I am hoping for a wonderful Olympics and Paralympics, but for a disastrous one for ATOS. And as for the International Paralympic Committee, I am hoping that this will serve to remind them that they are supposed to represent everything that is best about disabled people, not defend their oppression. The Olympic Spirit is about being the best that we can be, not about providing corporate whitewashes.  

#OpeningCeremony Programme Image Transcript

Last night this image did the rounds on Twitter. It's a page from the opening ceremony programme in which Boyle explained his vision.

As the image is not accessible to screenreader users, and because of its reference to the welfare state, it seemed sensible to post a transcript here. Huge, huge thanks to @lilacwheelz who actually transcribed it.

‘Be not afeard: the isle is full of noises’

The Tempest, William Shakespeare



At some point in their histories, most nations experience a revolution that changes everything about them.

The United Kingdom had a revolution that changed the whole of human existence.

In 1709 Abraham Darby smelted iron in a blast furnace, using coke. And so began the Industrial Revolution. Out of Abraham’s Shropshire furnace flowed molten metal. Out of his genus flowed the mills, looms, engines, weapons, railways, ships, cities, conflicts and prosperity that built the world we live in.

In November 1990 another Briton sparked another revolution – equally far-reaching – a revolution we’re still experiencing. The digital revolution was sparked by Tim Berners-Lee’s amazing gift to the world – the World Wide Web. This, he said, is for everyone.

We welcome you to an Olympic Opening Ceremony for everyone. A ceremony that celebrates the creativity, eccentricity, daring and openness of the British genius by harnessing the genius, creativity, eccentricity, daring and openness of modern London.

You’ll hear the words of our great poets – Shakespeare, Blake and Milton. You’ll hear the glorious noise of our unrivalled pop culture. You’ll see the characters from our great children’s literature – Peter Pan and Captain Hook, Mary Poppins, Voldemort, Cruella de Vil. You’ll see ordinary families and extraordinary athletes. Dancing nurses, singing children and amazing special effects.

But we hope, too, that through all the noise and excitement you’ll glimpse a single golden thread of purpose – the idea of Jerusalem – of the better world, the world of real freedom and true equality, a world that can be built through the prosperity of industry, through the caring nation that built the welfare state, through the joyous energy of popular culture, through the dream of universal communication. A belief that we can build Jerusalem.

Worcestershire County Council, Past Caring?

Austerity is hitting social care hard. More and more councils are changing their eligibility rules, directly affecting who qualifies for care. In turn, the closure of the Independent Living Fund (ILF) and the reduction of the care budget by local authorities, are antithetical to what the modern disability movement has been striving for in the last 40 years. As a result of this, the archaic model of residential care is threatening to make a comeback. Bringing with it a wholly paternalistic way of thinking: social services and those in positions of authority are restricting the freedom and responsibilities of people subordinate to them. 

Harsh wording perhaps, but this may be the reality for service users within Worcestershire County, as highlighted by the WeAreSpartacus report titled ‘’Past Caring’, released on the 12th of July, which served as a response to Worcestershire County Council’s Maximum Expenditure Policy. ‘Past Caring’, criticizes any impending policies that would impose a cap on care costs, meaning that anyone needing significant amounts of support may have to go into residential care. The initiation of such policies by WCC would only affect new service users, or those experiencing increased care needs. I suggest that this will result in a two tier system: service users with fixed care needs, already established within the system, will be temporarily safeguarded by such changes, however those with fluctuating or increased needs would be assessed under the strict eligibility requirements, and therefore be forced to make a fresh case for their right to live independently. The reality is that independent living in post-austerity Britain is under threat.

The 'Past caring' clearly state, there are three options: 1) Pay for the shortfall privately 2) Change the type or volume of care provided, or 3) Access community voluntary organisations and faith groups for additional care support. The proposed alternatives are unrealistic for those in long-term care. The first option is only available to a wealthy minority, or at best could be utilized as a stopgap measure for anyone until their savings run out. This contingency measure may well become a reality for some who are backed into a fiscal corner. However, WCC clearly states:

You (or a family member) could decide to make an additional financial contribution towards the care package (this would be in addition to any financial contribution you are required to make under the Council's Fairer Charging Policy) 

This suggests then, that a disabled person would not only have to continue paying for the council’s ‘Fairer Charges’, but also any additional care that isn’t covered by social services’ new policy. This begs the question, what has happened to the familiar phrasing found on most DWP letters, namely the fixed amount that you are legally entitled to live on - has this fallen by the wayside? Its absence under the new policy is palpable.

The second option, the reduction of hourly care, directly conflicts with the ethical and legal obligation of required social services. The ‘Past Caring’ report identifies that the number of care hours an assessment recommends would be fundamentally unmet after a reduction in “volume.” It’s important to note however, that once a person’s needs have been identified, then the state has a legal obligation to acknowledge their entitlement.

In turn, WCC have also suggested that the usage of adaptive technologies should be considered, which seems laughably absurdist. Cheaper alternatives, such as Direct Payment. have been identified by ‘Past Caring’ as not suitable for all, because many people cannot meet the demanding regime of paperwork, which is required from the service users themselves.

To my mind, the third option is equally as inadequate as the first two. The mere suggestion that disabled people can automatically access community voluntary organisations and faith groups, fails on many levels, not least because it places disabled people’s autonomy under pressure by forcing service users to seek charity, locating funding from sources whose social, political or religious leanings might not be in line with their own. Are we suggesting then, that people with disabilities are supposed to be grateful for help with the cost of personal assistance, wherever the source of this support comes from? This negates peoples rights to a personal social or political opinion, moving dangerously close to Cameron’s Big Society, which has shown to be unsuccessful and hardly sustainable as a long term solution.

Residential Care, a flawed alternative?

The report identifies the two groups at most risk, namely those with significant disabilities and care needs that will exceed the capped cost under the new guidelines of such policy. Thus the Maximum Expenditure Policy will undoubtedly lead to the routine institutionalisation of entire user groups, who will be shunted off to care homes for the rest of their lives. In the event that such suitable accommodation can be found, it is furthermore highly unlikely to be local due to its scarcity. This would lead to uprooting the service user, severing local ties to family and community, resulting in the loss of a broad social network. Depending on the location of the residential home, it may be extremely difficult for friends and family to visit regularly, leading in turn to extreme isolation and the deterioration of existing relationships.

The second group are those who are approaching the financial ceiling of the cap. Such service users, in order to avoid residential care, are likely to make detrimental life decisions in order to keep costs low. For example, skipping certain meals or utility costs to curb spending in their own care package. As a result, and as ‘Past Caring’ puts it, ‘the quality of life and safety of this user group is highly likely to be compromised by the Maximum Expenditure Policy’.

To sum up the main points made by ‘Past Caring’, firstly and most importantly, WCC service users are faced with the possibility of being forced to choose between home and the daunting possibility of residential care. The policy’s three suggested alternatives highlight the extent of WCC’s capabilities. WCC’s failure to provide an accessible consultation with service users opens the council up for legal scrutiny. Therefore, this report provides evidence that the only other valid option they are offering is that of being placed in a residential care home.

It has been suggested that the White Paper will put an end to the postcode lottery, delivering equality of care wherever one might live. Yet, the adoption of WCC's policy directly contravenes this. The action taken by WCC reveals certainly that, within the near future, there will be a clear disparity between provision for those who live in different counties. The bureaucratic mess gives counties a window of opportunity to exploit the weaknesses of Welfare Reform, meaning that unfortunate individuals will fall between the cracks of the system; becoming increasingly unheard and unaccountable. The impending changes greatly undermine lifestyle choices and the ability for people with disabilities to imagine a long-term future within Worcestershire County. ‘Past Caring’ states: 

...Moving into residential care for purely economic reasons will lead to curtailing of independence, curtailing of freedom, loss of income, loss of social ties, loss of community ties, loss of daily social activities, potential job losses and perhaps most shockingly family break up. 

The loss of community is a loss of social network, which I would define as a supportive component of independent living. Yet, questions have to be asked, does the introduction of such policy reflect a fair ratio of cuts, or are these burdens falling squarely on disabled people? Will there be additional financial burden from living within residential care, such as curtailed employment prospects due to prohibitively high costs? Let it be stated that freedom is under threat here and social isolation is the likely result. Therefore, it’s important for all local disabled people, their families and allies alike, to speak up before consultation finishes at the end of July. For more information, visit We Are Spartacus.

Guest Post: Supported Mortgage Interest and Welfare Reform

This is a guest post from @_louhicky.

A limited range of accessible housing restricts the lifestyle choices made by disabled people. There has been a lot of discussion about accessible housing in the media recently. Last week The Guardian published the article ‘Young disabled people failed by estate agents and property websites.’ The study ‘Locked Out’, recently compiled by The Trailblazers, a group of young disabled people, highlighted the common failure to understand the needs of wheelchair users; particularly with respect to what makes an accessible property. (NB: I know there is a glaring disability hierarchy at play here, for the sake of this blog I am going to put this argument aside. I’m taking note of it.)

The lack of social mobility is worth a mention here and the long-term implications of suffering restrictions within the housing market. In clarifying what I mean by social mobility: to many this signals the ability to move vertically or even horizontally within social classes. To progress, to study, to live independently, to obtain employment, to buy a car, maybe even an annual holiday, or simply to aspire to something. I’m not so interested in movement between social classes, but rather the importance of having choices - even if they are related to materialistic desires. One comment by user cycleloopy on The Guardian’s feature, states:

Estate agents want to do the least amount of work for the most return. Recognising the needs of people with disabilities sounds too much like hard work.

There is a stinging element of truth here, but let’s reframe this comment. Estate agents desire profit, this limits the housing stock or profile for those who seek accessible housing. The private rental market is not a realistic choice for people who require adaptations to be made. Again, the ‘Locked out’ report found that seven out of ten say they find it difficult to identify accommodation that is accessible to them, largely because estates agents have poor knowledge of adapted properties in their area.

The chances of successfully appealing a decision are quickly evaporating under the coalition government, leaving disabled people left without choices, trapped within their own circumstances. What’s next, the property ladder? Yet, the [Locked Out] report found that nine out of ten people say that they are just as keen to get onto the property ladder as their non-disabled peers.

Home Ownership schemes (which have been mainly brought about by the Labour government) such as HOLD (Home Ownership for Long term disabilities) increase the availability of accessible housing, especially if these free up local authority properties. Effectively, this creates a small-scale economy for people with disabilities, and, as a result, creates demand and opportunity for others. Ownership is currently, albeit rather precariously, available with the assistance of Supported Mortgage Interest (SMI), which has been extended under this year’s budget until January 2013. However, SMI is presently under review (the consultation period ended in February 2012), and it would seem that the coalition government is underestimating the power of ‘crip economy’ and its potential as a source of fiscal stimulus. The DWP’s SMI impact report shows that there were roughly 239,000 recipients benefiting from this scheme in 2011/12, at a cost of £400m.

Under welfare reform it has been suggested that SMI will be further incorporated into the Universal Credit system, however this complex process of streamlining benefits would undoubtedly mean that some people are likely to be left out. A Guardian feature from late last year, Disabled people pay price for cuts to mortgage relief revealed that regardless of these changes, SMI payments have become unpredictable, as they already have been subjected to cuts. When, for instance, average interest rates fell below 6.08% some people enjoyed a surplus on their payments, whilst when the rate was cut to 3.63%, others found their payments falling short of what was in fact owed. Under pressure, then, from both Welfare reforms and unpredictable SMI rates, disabled people are prevented from making the move onto the property market that they ostensibly desire, and as a result fully adapted homes are lying empty.

It is evident therefore that the long waiting list for accessible properties substantiates the idea that there is high demand and no supply. Indeed this is not helpful whilst transferring between local authorities with care packages. The ‘Locked Out’ report reveals that eight out of ten people are not confident that they would be able to access the same level of care and support if they moved out of their local authority. Similarly, relocation for a new job is almost impossible. As Channel 4’s No Go Britain highlighted in its interview with Hannah-Lou Blackall. No housing means no job.

A lack of housing options denies disabled people the basic right to make choices about their lifestyle. The ‘crip economy’ shows potential for growth, but the enforcers of housing policy need to ensure that local authorities are building all new housing options to the Lifetime Homes Standard, and even further that ten percent will be built to wheelchair standard design.
This post hasn’t even begun to tackle the adaptation of existing homes, or cooperation of private landlords within the letting market. In the United States, an accessible apartment is defined ADA (American Disabilities Act) accessible, clearly labeled, and clearly following the lines of the disability law - most importantly defining a standard within the marketplace. In order to be classified as ADA accessible, properties have to meet certain legal requirements: there is no room for subjective interpretation, or making do with already-existing properties and their flaws. If the British government adopted tougher measures, recognizing the value of choice, whilst sustaining the current growth of both social and private markets they could offer people the chance of taking their dream job, or ensuring that family growth and long term security is achievable, or even, quite simply, the chance to live with flat mates without complex bureaucracy.

More information: My safe Home - http://www.mysafehome.info/

Karen Sherlock - An Ordinary Woman In An Extraordinary World

Karen Sherlock was just an ordinary woman. She didn’t have a great deal of money, her health meant she didn’t get many opportunities to go out, particularly not anywhere you might have seen her, and even if you did you wouldn’t have given her another thought. Just another woman in middle age as invisible as all women past a certain age become. 

But Karen had another life, one in which she was recognised for her courage and determination to stand up for the rights of all sick and disabled people subject to the Work Capability Assessment. You might not have noticed Karen, but had you paid attention you would have seen the story of an utterly remarkable woman, who’s experiences typify the disconnect between the reality of sick and disabled people’s lives and the blunt instrument employed by the state to rule if we are ‘fit for work’. 

Karen was diagnosed with type 1 diabetes when she was 3. By the time she reached working age she was already developing complications from the diabetes, but that didn’t stop her working and living a full life. Time passed, she married her beloved Nigel and worked in the NHS. Her health worsened, and after losing most of her eyesight it became impossible for her to continue working. In February 2008 Karen was dismissed from her job due to ill health, a decision made by the Occupational Health arm of Atos on behalf of the Pensions Agency. 

This is when Karen’s nightmare truly began. She applied for Employment Support Allowance, formerly called Incapacity Benefit, which is a benefit for people who are unable to work temporarily or permanently due to disability or ill health. She was called to attend a Work Capability Assessment ‘medical’, again run by Atos, but an Atos held to entirely different standards by the Department of Work and Pensions than the Atos who’d decided she was unfit to work in the NHS. The standards used by Atos to medically retire Karen from her NHS job considered whether she was well enough to do that specific job, but as intended by the government, the Work Capability Assessments she endured were designed purely to assess whether people have any capacity for some work in some form. Ministers such as Chris Grayling have made it very clear that this is the intention of the test by repeatedly stating their ‘absolute and implacable opposition to a real world test’. In normal person speak what that means is that Ministers refuse to consider a fitness for work testing process that considers the job the person was trained to do and whether they are still capable of carrying that out, instead focusing narrowly on whether they have some capacity to perform imaginary work related tasks such as being able to sit at a workstation for half an hour. On May 30^th 2012, the day before Karen was finally placed in the Support Group, a mere 10 days before her death, Chris Grayling announced that those in the Work Related Activity Group, those people just like Karen who could soon expect to be mandated to the Work Programme “have proved sicker and further from the workplace than expected” That is one way of describing it to the 32 families each week grieving the death of their loved ones who had been found ‘fit for future return to work’, people a far cry from the supposedly lazy scroungers the public have been led to believe this policy applies to. 

Karen described her first WCA in Spring 2008 as a ‘farce’, never heard the results and was called for another WCA in August 2008 when she was placed in the Work Related Activity Group. Karen had diabetic autonomic neuoropathy, gastropaerisis and diabetic retinopathy. She was partially sighted, with a heart condition, asthma, chronic kidney disease, B12 deficiency, anaemia, high blood pressure and was frequently doubly incontinent. For all these reasons she was correctly found unfit to perform her role in the NHS, but the Work Capability Assessment is not designed to consider whether someone is fit to work in their job of training, it is a blunt tool purely intended to separate people out into 3 categories;  those who are unfit for any kind of work, placed into the Support Group with no conditions attached to their benefit receipt, those who are considered entirely fit for work and transferred to jobseekers allowance, then the WRAG  intended for people with some disability or health problems considered able to return to the workplace in some future capacity. Those placed in the WRAG are expected to participate in activities aimed at returning them to the work place, including mandatory work programmes in some circumstances. For those in receipt of contributions based ESA (the benefit paid in return for National Insurance contributions) a one year time limit applies, retrospectively, whereas this benefit used to be paid as of right to those with sufficient NI contributions for as long as they were sick or disabled. This means that people such as Karen who had worked all their lives lose their eligibility for ESA. Karen’s husband Nigel worked, but even before tax didn’t earn anything approaching the £26,000 pa means testing limit being introduced for other benefits.  This didn’t matter as the means testing limit for ESA is a partner earning a mere £7500 pa. 

Karen endured the stress and anxiety of four WCA’s and subsequent appeal processes between 2008 and April of 2012 when her ESA stopped completely, leaving her and Nigel £380 per month worse off. Karen was terrified, so much so that her fear was palpable, even online. She worried about how they’d pay their mortgage, basic bills, how Nigel would cope. At the same time Karen was consumed with anxiety about the financial aspects she was also in worsening health, awaiting an operation to enable her to start dialysis, being considered for the transplant list and investigated for worsening cardiac problems.  Despite all that, Karen remained in the Work Related Activity Group. 

I first knew Karen in October 2010, when we founded The Broken of Britain a social media based disability rights campaign. We were asking sick and disabled people to speak out, to tell their stories about how they had become reliant upon benefits, and people were initially reluctant. Pride and fear combine to prevent us wanting to discuss the intimate details of our lives in public. But a small handful of people stepped forward in those first few days, they pushed aside their anxiety that speaking out would be used against them by the DWP and told their stories. Karen was one of these people. Although she is probably the most terrified person I have encountered to date about the welfare reforms, she was also the first to stand up to be counted. Karen understood that telling her story would help other people and so she acted in characteristic manner and did what she believed to be right for everyone. The last email I have from Karen is from early April 2012 when she told me she’d used the benefits calculator I’d suggested to see if there was any other support she and Nigel could claim. There wasn’t. I couldn’t offer Karen any hope, all I could do was apologise and explain to her that this was the exact intended effect of the benefit ‘reforms’ we had all fought so hard to prevent. 

I can’t think of an online group who didn’t benefit from Karen’s presence over the past two years, she played an active role wherever she could, trying to support other people in distress. When Karen was frightened, which was most days, she would literally beg other campaigners for the reassurance that everything would be ok. Every time it broke a piece of my heart not to be able to offer her the security she needed, the answer she was so desperate to hear, that it would be ok, that it was all some big mistake. None of us could ever tell Karen that, she died a mere 8 days after getting the notice she had finally been placed in the support group, her last years of life utterly blighted by ‘despair, helplessness and frustration’ directly caused by a government who’s leader had pledged to alleviate precisely such bureaucratic suffering. 

For me, one memory typifies both Karen Sherlock and the complex, bureaucratic cruelty she experienced. The Atos nurse who performed Karen’s initial WCA was kind to her and tried to reassure her that she should be in the support group. These comments stuck with Karen, she could not understand how what had been so obvious to the first person to assess her had been overturned, nor why everyone else she appealed to seemed so wilfully blind to it. It both haunted Karen and gave her the strength to carry on fighting for what she knew to be right. I explained to Karen that although she’d been assessed by an Atos employee, a Department of Work and Pensions Decision Maker, with no medical training made the final decision about which group people are allocated to, the support or Work Related Activity group Karen was repeatedly placed in. In passing I mentioned that the people carrying out the ‘medicals’ weren’t supposed to comment on which group people are put in. Despite her terror, her anxiety and the disgraceful way the system had treated such a vulnerable individual, Karen worried that if she spoke out about that nurse’s compassion she might get her into trouble for having demonstrated a kindness the process of claiming Employment Support Allowance is designed to deny. 

Goodnight Karen, Sleep Well Xx 

Flowers and tributes were sent for Karen's funeral from donations from her online family

The Real Cost of Losing Motability - #ReversingRecovery

A report released today shows how PIP will be disastrous not only for the disabled community, but also for the car industry. In short, ending DLA will have a serious effect on the economy. The report is calling on the government to reconsider its reforms to DLA, including by consulting more widely.

The report, 'Reversing from Recovery', makes it clear that many fewer disabled people will be eligible for Motability cars under PIP rules. To quote the report, we're looking at "a 27% reduction in the number of working age disabled people, and a 17% reduction in the number of disabled people overall" who can access Motability cars. There will be major effects on the economy as a result, including a £342 million drop in contribution to GDP as a result of the changes. Many disabled people's ability to work will also be drastically reduced. In a time of economic difficulties, this is one cut that will harm, not help, the economy.

As many disabled people will be able to tell you, the changes are going to have a drastic effect on our lives, as well as on the economy. As today's report shows, "85% of Motability car users say the car has a positive impact on their ability to access health services, whilst more than 1 in 3 of those able to work say it maintains or improves their ability to undertake paid employment." Transport is still so appallingly inaccessible for many of us, as DPAC's Right To Ride protest recently highlighted. Other disabled and long-term ill people have medical and social needs for cars that other disabled people do not, and those needs are getting worse as the cuts mean more people are losing the support that might help, like social care. And as we all know, this is not a free car - we pay for it with our DLA Mobility Component. We're not talking about a free ride here, but a positive contribution that disabled people make to the economy and which in turn means we can have reliable, maintained cars through a lease scheme that we can afford. (Don't underestimate the importance of 'reliable', either, for people who have serious health difficulties or live in vulnerable situations.)

Disabled people have been concerned for some time now that our access to Motability is going to be affected by PIP. As we've been arguing, PIP moves the goalposts to such an extent that many people who now qualify for a car under DLA will no longer be eligible under PIP. Despite rather vague promises in the House of Commons (scroll down to Anna Soubry's question to see the non-answer), the government is failing to respond to these concerns. And when it comes to Motability, it looks as though it's not just disabled people who are set to lose out.

Although of course, we're going to lose out the most. I'm really quite terrified about this one. My Motability car has meant that I can pursue a university course and do part-time work as well. It looks like I won't be eligible under the PIP rules, and that will probably mean I can no longer do any paid work or studying. These are the kind of situations that the government should be worried about, but PIP shows that their back-to-work rhetoric is not actually based in reality. As we already knew. As the report puts it, "We’ll see disabled people less independent, less likely to be able to get or keep a job and more likely to close businesses or give up self-employment. Having welfare reform plans which interfere with employment prospects is nonsensical. The Government should think again."

'Reversing from Recovery' is published by the WeareSpartacus campaign group, who have drawn on Motability's own reports. They've provided template letters that you can send to your MP, the Lords or your local newspaper - go to http://wearespartacus.org.uk/letters/ for details. To spread the word, use the #ReversingRecovery hashtag on twitter. This is the kind of news that the government will not be wanting us to talk about. Let's get talking about it.

• Details of the Government's proposals for PIP, including projections of the number of people expected to be eligible for the enhanced mobility rate, can be found in the DWP consultation document, 'Personal Independence Payment: Assessment thresholds and consultation' (January 2012), available at http://wearespartacus.org.uk/reversing-from-recovery/ .

Local Housing Allowance Cuts & The Idealised Family

This is a Daily Mail link, thus the succinct and witty title:

Cameron to axe housing benefits for feckless under 25s in war on wellfare culture

Or as I would have put it: Under-25s to be denied Local Housing Allowance. Maybe.

The Conservative Government have an idealised view of normal families being wealthy, upper middle class, living in large houses with plenty of space, where everyone gets on well, everyone works and spends time outside the house and parents are committed to providing for their offspring for as long as it takes for them to get on their feet. Getting on their feet, in the mind of David Cameron, seems to mean saving up to buy a house (a neat trick at the best of times, let alone when you're poor enough to be on benefits).

I know a lot of nice families. I don't know any families like that.

My parents are great, but they didn't see parenthood as a lifelong financial burden and expected my sister and I to be independent. I started paying rent (though admittedly not much) at sixteen and moved out at eighteen. They helped my sister through university to the best of their ability but have provided no further financial assistance to either of us since. They are generous with their time and energy, I get Christmas presents I couldn't afford to treat myself to, but as far as they are concerned, they've done their bit.

By the time I was eighteen, I couldn't stand living with them any more. They were not abusive. They weren't terrible about my illness, but they weren't coping with it at all well, at a time when I wasn't coping with it at all. They struggled to see me suffer and half the time they treated me like an infant, while half the time they kept their distance and made it difficult to ask for help. They were, at that time, fantastically homophobic*. Both of them were also under a fair amount of personal stress; Mum's father had died the previous year, Dad was unemployed and I was frequently caught up in the middle of their arguments. And this was making me ill. It wasn't the only thing making me ill, but it was a big contributing factor to the suicidal depression that took hold.

As it was, I met a thirty-four year old man who took advantage of my considerable vulnerability - including my housing situation - and whisked me off to the other end of the country. This seemed like a really good thing at the time; I had a rock bottom self-esteem and was used to being treated like a child, so I wasn't able to identify verbal abuse, controlling behaviour or even the violence for what it was. What's more, being sent home to my parents in humiliation was used as a constant threat and since I couldn't live by myself, I felt this was my only other option. It was only much later, when I realised that I had friends and several family members who would be prepared to provide refuge should I need it, that I was finally able to leave.

I needed to move out when I was in my late teens. A change in legislation wouldn't have stopped my story happening, but it would remove a vital option from other young disabled women (and women who are poor for other reasons). Young and vulnerable women without any option of independent housing are going to be even more vulnerable to older abusers who don't have to work too hard to seem a more attractive option than staying with Mum & Dad.

The difficulties of living with parents are exaggerated for disabled people - folks who find it easy to live with their parents are usually extremely independent, able to go out whenever they like and only pop home to sleep off the hangover. When you're at home most of the time, need meals cooking, let alone help with bathing and so forth, there's far more pressure on that relationship. Some parents of disabled people are so used to being anxious about and protective of their kids that they take a long time to realise that their children have grown up. If indeed, they ever do.

That was my situation, but there are myriad other reasons that young people cannot live with their parents, apart from obvious things like having no parents or having terrible parents (who are by no means restricted to parents who beat you up - one exceptional circumstance the article acknowledged). These include

• Parents live in a house too small to accommodate you, e.g. they've got a smaller house now, Gran's moved into your old bedroom or you'd have to share a room with two five-year-olds and a budgie named Elvis.
• Parents' house is physically inaccessible. 
• Parents' house is an unhealthy environment for you - I had one young friend with ME who wound up in a hostel because the noise and chaos of her multiple younger siblings made it impossible for her to get sufficient rest.
• Parents make it difficult to be yourself in some way (e.g. they disapprove of your sexuality, religion or lack thereof).
• Parents live in a completely different part of the country to where the young person lives and works. Not only it is perfectly reasonable that young adults move to other parts of the country, for studying, work or because somewhere is more suited to them, but it is even more reasonable that young people shouldn't have to move back - or indeed follow their parents around the country - if something goes wrong. You might have begun to establish a career in London, only to be unemployed at the age of twenty-four, and rather than staying in London while you find a new job, you have to return to Orkney where it is impossible to apply for London jobs.

When I was twenty-nine, I was forced to move back in with my parents. This situation changed soon after and I now live less than half my time with my own folks and the rest of the time with my boyfriend's parents - who are, in fairness, somewhat closer to Cameron's ideal, only without having any money to spare. 

However, my parents struggled with this. They wanted to help, because I'd found myself in very insecure accommodation where I didn't have access to freezer space or a functional washing machine, let alone the help I needed. But they didn't understand why I couldn't get social housing with a snap of my fingers and move out again right away. They couldn't understand that Local Housing Allowance wouldn't pay full rent on any suitable place I might want to live - in fact, it wouldn't pay for any place I could reasonably live, such that I could afford to eat as well, in this not at all posh part of rural Suffolk.

My parents house is inaccessible, and while folk in other areas of the country can't get the basics, I've had to turn down all kinds of adaptations from social services because this is not my house and my folks don't want the place looking like a nursing home. They would never consider getting a vehicle that could transport my power chair, so I can't get out much while I'm with them and have to ask my boyfriend's Dad to help me on most significant journeys. And apart from all that, it's been a struggle. Not an insurmountable one, but a struggle, nevertheless.

This is a normal family. Some people reading this might judge my parents badly, but others will know how lucky I am that I've got a comfy room and a roof here and get on with them well enough that this is okay for now - especially as I don't have to be here all the time. But there is nothing remarkable about my situation or the attitudes of my folks. They love me and they have done their best for me. Even if they were to be judged badly for that, it's not something I - let alone my desperate eighteen year old self - have ever had any control over.  

* They weren't as bad as all that, really, but I love my parents, and when I think about things they said then, when I was having come to terms with my sexuality in secret, I find it very shocking and hurtful. However, I know they could have been worse, and if they'd found out about my sexuality then, they probably would have dismissed it as an abhorrent phase  as opposed to throwing me out or anything nearly so dramatic.

Guest post: Spoon overdrafts and the #WCA

This is a post by @MargoJMilne and originally appeared here on Tuesday 12th June.

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...



But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.



And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do all we can, for Karen and its other victims.

Ungrateful

I am chronically sick. My illness forces me to rely on income from benefits because I am unable to work. I have just been told that to object to the monarchy and to hold political views while I live in this country where the welfare system looks after me is ungrateful. I can't begin to address how wrong that idea is.

It stems from the same point of view that says I should lie in bed all day and think about how terrible I am to need taxpayers money to support me. The idea that I do not work so I have no right to any quality of life, to leave the house or to have any enjoyment in life.

It is the same point of view that says that I live on taxpayer's money, so every tax payer has a right to question how I spend my income, and that I should never spend it on anything nice or entertaining.  The point of view that is jealous of my Motability car because I obviously don't deserve it and I shouldn't have a better car than someone who works. (Never mind that the car provides a way for me to get to my medical appointments and to do things for myself rather than require yet more help from the state, and that I lease and pay for it out of a benefit that I already receive.)

These are the views that lead to sick and disabled people being reported for benefit fraud because someone saw them walk a short distance or carry out some task that other people feel makes them fit for work, without any idea of variable health conditions, good and bad days, of doing something despite the pain or the payback later because the task must be done.

These are the kind of views that have allowed the government to actively remove much of the support given and the progress made over the last thirty years in the lives of sick and disabled people. These are the kind of views that lead to disabled people being locked away in care homes to die quietly without bothering anyone. This government has reversed things so much that councils are actually moving sick and disabled people into care homes to save money. Back to the age where they are out of sight, out of mind.

These are the views that led the Nazis to murder 240,000 disabled people between 1939 and 1945, so forgive me if I complain about the government and hold political opinions of my own. I have good reason.

Worcestershire County Council to put disabled into care

Lest We Forget: Eradicating the 'Useless Eaters' in the Third Reich [PDF]

Like a puppet on a string

Got a letter from the council this morning telling me they've sent the DWP an order to stop my income support and pay it to them instead because of outstanding council tax benefit (that I'm not actually liable for).

So, Camden Council realised their fuck uppery and reduced the "debt" I owe them. Not cancelled entirely, just reduced...

— Lisa Egan (@lisybabe) May 10, 2012

... However they REFUSED to cancel the "stop her benefits and give them to us instead!" order they sent to the DWP...

— Lisa Egan (@lisybabe) May 10, 2012

... So I'm still having my benefits taken to pay a non-existent debt. Hate having no independent income: The state can fuck w/ me for laughs

— Lisa Egan (@lisybabe) May 10, 2012

At least I found a purpose in life: "Dance little puppet, dance!" is presumably amusing someone at Camden Council.

— Lisa Egan (@lisybabe) May 10, 2012

It's nice to serve some useful purpose. If my despair wasn't keeping someone at the council with a love of schadenfreude entertained I would merely be just a useless scrounger off the state who added nothing whatsoever to society.

The woman said "We *only* want to take about £360 a week." Which is £150 more than my entire combined weekly income.

— Lisa Egan (@lisybabe) May 10, 2012

Apparently someone who should know better has fallen for the tabloid insinuation that all benefit claimants get £500 a week.

At least I live in London where no-one cares about someone in tears going down the street. Couldn't bear it if someone asked if I was OK.

— Lisa Egan (@lisybabe) May 10, 2012

Like my life wasn't fucking miserable enough.

Crowd Mapping the affects of Housing Benefit Reform

I doubt there is anyone reading this who isn't aware that the reforms to Housing Benefit will have a huge impact on the lives of claimants. With more being deducted for non dependants living with claimants and a limit on size of property that can be claimed for amongst others big changes are underway.

Citizens Advice is working hard to protect people's rights and support those who are in difficulty. Benefit reforms are something they are watching closely, both the national organisation and the individual bureaux on a local level. A big part of their social policy work is gathering evidence as to impacts. It's really useful for raising awareness.

Hackney CAB have been using crowd mapping to record the impact housing benefit cuts are having in their area.

The map shows the area (ward not exact address due to confidentiality) where a problem has been reported. These are colour coded by type such as shortfall, overcrowding or arrears. You can the click on an entry for more details.

Looking at the map highlight the scope of the problems in Hackney. I knew there was a huge issue but seeing it like that is quite eye opening. There will however be many others in that area struggling who haven't sort advice. And thousands of others all over the country in exactly the same position.

On that website there is also a page with some stats about predicted the impact of the housing benefit cuts. It includes a stat the coalition are probably hoping no one realises.

93% of new housing benefit claims since the election are from people who work and have a low income. Working isn't going to help those people deal with the cuts.

Disabled people aren't mentioned in any of those stats. But the impact on us is likely to be bigger than on any other groups. Not are we facing ESA migration and cuts, the implementation of PIP and drastic changes to many other services a lot of us will also be hit by benefit changes which also affect non disabled people.

Hackney CAB crowd map can be viewed here

I'd really recommend contacting CAB if you need help or advice with benefits or any other issue. Advice Guide is the best place to start and as well as factsheets has a find your nearest bureau function.

A hidden benefit cut #counciltaxbenefit #welfarereform #wrb

On Wednesday I attended a forum of people who are for the most part volunteers and campaigners. The main purpose of the event was to discuss the planned changes to housing benefit or local housing allowance.

Another benefit change was also briefly discussed. One I hadn't been aware was happening.

As of April 2013 Council Tax Benefit will no longer exist in its present from. It was suggested by the facilitator at the forum that the news of this change has been lost in all the information and outcry about the planned housing benefit changes. I leave you to make your own mind up about whether this was done deliberately by the government. I did wonder just how it was I hadn't heard of this.

Council Tax Benefit is centrally controlled at the moment. You apply to your local council but the rules and money come from a central pot. It's not strictly speaking a disability benefit. A lot of disabled people do receive it but it's available to anyone who is on a low enough income. A high proportion if the people who receive it are in work and for some it is what allows them to remain in work or to take work in the first place. Currently it's possible to receive all or part of your council tax paid via benefit (claimants don't receive this money it goes straight to the council) and also in some circumstances to receive a separate discount for which you don't need to be on benefit.

So in my own case
My council tax bill is discounted by 25% because I live alone (this is called the single adult reduction and any household where only one person over 18 lives is entitled to it. Claimed via contacting the council)

My flat is a band b property however because I'm a wheelchair user the council tax due is reduced by 1 band meaning I'm liable for band a prices. For people who live in band a it's reduced by a set percentage. (this is available to anyone who needs extra space for wheelchair use or an additional room due to medical needs. Again claimed from the council)

And as I am deemed to have a low income I receive Council Tax Benefit which in my case pays the remainder in full.

If I was working I may have received some benefit and had to pay the rest. It really is on a case by case basis. I know of people who receive perhaps only £15 a month council tax benefit and pay the rest and people who receive all but £5 a month of their council tax in benefit and pay that £5

From April 2013 however there will be no set rules for the provision of council tax support. Instead it will be provided locally with each area deciding how best to use it. The pot of money to be available for this is to be 10% less than the current bill for council tax benefit and this money will not be ring fenced.

This will almost definitely create a postcode lottery in what support is available. My suspicion is that areas which are already poor at providing services such as social care are likely to also use little of the available money for council tax support. Yet another hit for disabled people and for many others who may well not carry the scrounger stereotype we crips must fight.

The government would probably argue that if people have enough income to be only receiving a small sum of council tax benefit each month - say the £15 I used above - they can afford to pay that too.

It's easy to say that when you have a high paying job, secure accommodation, good health and family who support you like most of the government do. £15 is maybe a starter in a restaurant. They miss it but it wouldn't be a big deal and come next week they probably wouldn't remember it.

It's not so easy when you're on a low income. The £15 you've just lost could mean you can't pay for your prescriptions or you can't eat for a few days or the carer who comes once a week to change your bed must be stopped. Not easy to manage without and not something you can say "oh well" and forget about.

Edited (by Lisa) to add: We've had quite a lot of Tweets related to this post. As not everyone follows us on Twitter so will have seen them RTed; I thought I should post some of the more crucial ones here to add them to the debate. The limits on what html can be used in comments means you can't embed tweets below the line.

@wheresbenefit Didn't realise you hadn't spotted it. There's more too. The 10% cut isn't allowed to be taken from pensioner households, so..

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit ...all the cut in the total pot must come from working-age households (regardless of need), which effectively means a...

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit ...higher than 10% cut in the available funding for those households.:-(

— Itsmotherswork (@itsmotherswork) May 6, 2012

@wheresbenefit Some LA's like my own say they have no plans to alter CTB eligib, others say pensioners protected every1 else *shrugs* :(

— BendyGirl (@BendyGirl) May 7, 2012

@itsmotherswork @wheresbenefit We have funded @theifs to look at Council Tax Benefit devolution @jrf_uk. Report out end of May.

— Chris Goulden (JRF) (@Chris_Goulden) May 7, 2012

@itsmotherswork @wheresbenefit estimated that the cut could be as high as 25% for working age households depending on local demographics.

— Jeff Skipp (@JeffSkipp) May 7, 2012

The Price of Hate #BADD2012

It’s Blogging Against Disablism Day, and that’s taken me by surprise. That wouldn’t normally be a problem, last year I knew about it well in advance, but this year I’m struggling more, and – Ironically? Poetically? Absurdly? – I think the reason is the disablism I’ve faced over the last couple of years

The problems started with my application for Employment and Support Allowance, for which we have to go back to February 2010, and the day that Jobcentre Plus admitted (under ministerial prodding, having previously told me to shut up and do as I was told) that I was too disabled to claim JSA, too disabled for any of their training schemes, and needed to claim ESA instead. ESA comes complete with a massive form, in which you are expected to summarize every aspect of decades of disability in the tiny spaces provided (there was no electronic version of the form available at that point, despite it having been in use for several years – DWP’s contempt for our needs was all too apparent). So I improvised and created my own electronic version, because I can’t write legibly for more than a sentence and some of the information on my disability is so personal I hesitate even to tell my consultant, so there was no way I could ask someone else to do it for me.

To say things then descended into low farce would be giving ATOS,  DWP’s French contractor (who are IT rather than disability specialists – and it shows), an unwarranted reputation for competence as I now had to face their infamous Work Capability Assessment. At my first assessment appointment, the adjustable seating I had told them I needed hadn’t been provided. The doctor I spoke to confided that they had requested better seats, but been told to make do with the cheap, unsuitable seating they had by their area management (so, contempt yes, competence no). That visit triggered a massive flare-up in my disability, I quite literally spent a week on the bathroom floor, in so much pain I didn’t know what day it was, and the next three months doped to the eyeballs on opiate painkillers. Needless to say I didn’t get very far with my ESA claim. When I finally got back on top of things, I found ATOS had told DWP I didn’t attend the appointment. In a rare demonstration of competence DWP agreed to reinstate my claim (the ‘Oh, not again’ when being told what ATOS had done might have had something to do with it) and arranged another assessment.

By now we were into October 2010. ATOS did manage to have an adjustable chair for me this time (it didn’t help), but every other aspect of the assessment met the worst stereotypes about the way ATOS behaves. The hour wait past my appointment time - ATOS routinely overbook by 25%, having nothing but contempt for the fact their patients may find extended sitting acutely painful – left me in pain and shaking before I even got through the door of the assessment room. The ATOS doctor was abrupt, overbearing, wouldn’t meet my eyes, had clearly made up his mind I was faking before I ever entered the room and generally tried to browbeat me into saying what he wanted, and not what would get me the benefit I was entitled to. He clearly wasn’t used to someone who was able to meet him head on and argue their case intelligently and knowledgeably (though he did criticise me for having that knowledge). And then came the moment when I had to tell him ‘I need to stand up, or else I’m going to throw up’, and a look of utter panic passed across his face as he realised that my claim was utterly genuine, and that he had just spent most of the last hour abusing a patient in violation of his oath. The change in his manner couldn’t have been more marked, though he still managed to criticise me for being unable to bend my knee because of the degree of pain I was in. I walked into the room on crutches and both feet, I came out in so much pain I couldn’t weight bear on my left leg (ironically this was one of the symptoms I had been criticised for describing earlier). Fortunately this time the flare-up only put me in bed for the rest of the day, not weeks or months.

Amazingly I passed the assessment, though whether I would have without the visible flare-up is the elephant in the room. Nevertheless, the Select Committee on Work and Pensions were interested enough in what goes on in ATOS assessments, even those where people pass first time, to put my account into their report documenting the failures of the ATOS run WCA. On the other hand, I still couldn’t bring myself to apply for Disability Living Allowance. My walking difficulties mean I probably qualify for Higher Rate Mobility, but it’s marginal, and applying would mean another assessment, and likely an appeal, and that was just more than I could face.

With ESA sorted, things seemed better at the end of 2010, but 2011 brought disablism crashing back into my life. DWP contacted me to tell me that they had received an anonymous tip on the National Benefit Fraud Hotline, alleging I was working full time. The DWP are proud of their hotline and emphasise it to the public at every opportunity, yet 94% of claims it receives are either malicious, or have no basis in fact and I’m willing to bet most of that lack of basis in reality itself originates in xenophobic attitudes, whether they be related to race, disability or whatever. DWP seem to be very careful not to release any figures to show how many of those 94% of claims are directed at minority members.

I am lucky if I get out of the house for 4 hours in the week, and my car sits in open view for all of that time I am at home, so I was really interested to hear what evidence had been provided to DWP in support of this claim that I was working 9 til 5. The answer turned out to be none, DWP investigate all claims, no matter how much evidence is provided, no matter the consequences to the person being investigated.

So the DWP investigation crashed and burned the moment their investigator met me, but the stress was still enough to trigger another massive flare-up, one that lasted for 4 months, at its worst I spent an entire month without being able to sleep for more than an hour at a time, and that only while propped into a sitting postion. The overwhelming likelihood is that the claim was disability related harassment, in breach of the Equality Act 2010, but DWP refuse to release any information on allegations made by the Hotline, no matter how egregiously obvious the discrimination driving the claims is. Or to put it bluntly, DWP are allowing themselves to be used as the tool of racists and disablists in criminal harassment, and such is their contempt for us they are happy to go along with it no matter how overwhelming the evidence of this is.

And so 2011 went on, a year of fighting the government’s increasingly open disablist attitudes, fighting against the horrific Welfare Reform Bill, occasionally talking to the media about my experience of disability hate crimes, the benefit fraud allegation being a popular topic there. Yet no matter how hard we fought, attitudes to disability seemed to go from bad to worse, with even BBC getting in on the act, whether it be Dom Littlewood chasing down another supposed scrounger on Saints and Scroungers, John Humphrys claiming we are a generation without the will to work, or Panorama telling everyone that any disabled person who dares to sail or drive a good car is clearly a fraudster (I had just got back from a holiday sailing with friends, that was the first time a TV programme had ever left me too intimidated to leave the house). When I talked about disablism on the BBC local TV news, they even brought in the local Tory MP to counter me and claim that people were perfectly entitled to be angry with us. 

I even managed to get the campaigning group 37 Degrees to recognise that disabled people couldn’t hope to win their popularity contest method of choosing campaigns, but where they spent well over a year campaigning against the NHS Bill, their sole intervention on the Welfare Reform Bill came not at the eleventh hour, but at 11:59:59. Needless to say it didn’t help, but it did show that when it comes to appealing to humanity’s common goodness, crips will lose to badgers, or trees, every time.

And then, just at the end of the year, it happened, a brown letter lying on the floor in front of the letterbox. ATOS wanted me to attend another WCA.

I tried to fill the form in, I really did. I even tracked down the electronic version, but every time I tried to fill it in I felt physically sick and my pain levels soared. I lost nights of sleep, spent days curled up in pain, and ultimately I realised I couldn’t do it. I honestly don’t know what the state of my claim is, it’s fairly obvious DWP have suspended or dropped it (no money going into my account), but I simply can’t bring myself to open the letters from them, or anything that even looks like it might be from them.

I have finally had to realise that those farcical ATOS WCAs, amplified by the disablism that runs rife in the media and taints attitudes on the street, have actually done me some very real damage, and that, like any other traumatized abuse victim, I hesitate to put myself back into the environment where I was abused and where the likelihood is that I will face more abuse. I don’t know where I go from here, even if I submitted a WCA claim today, I would get no money from it, because Time-Limiting of ESA kicked in yesterday, and anyone who claims Contributions Related ESA will lose their benefit after a year, which I have already had. The government accepts that tens of thousands of ESA claimants are genuinely unfit for work, but says it is unreasonable of us not to have adapted to our disabilities after a year and not to have found another job, no matter the rampant disablism of the jobs market, no matter the millions of non-disabled people out of work, no matter the reality that disability is generally for life, and if that attitude isn’t disablist, then what is?

I could still apply for DLA, but HRM isn’t remotely enough to live on, and I would face precisely the same attitudes in its assessment. Worse, it is being replaced by Personal Independent Payments, and the companies shortlisted to run PIP's assessments are a rogues gallery of those with the most dreadful reputations for dealing with people. What exactly is it about a company that spends its time playing prison guard by shoving immigration detainees around the system that qualifies it to assess how disabled I am?

I have been trying to write this article since the New Year, but the fear spilling over from the WCA thing has left me struggling to manage at all. I seem to be climbing out of it, slowly, but it needed the impetus of Blogging Against Disablism Day to let me, force me, to do this, and I still have to find a way to face my WCA demons. No matter our efforts, Disablism is not just alive and well, but thriving.

Postscript 1: Leveson

In grim irony, Blogging Against Disablism Day has seen Katharine Quarmby, author of the stunning and sickening expose of disability hate crime ‘Scapegoat, Why We Are Failing Disabled People', writing in the Huffington Post to say that the Leveson Inquiry into Standards in the Media has refused to call either her or any of the disability organisations who have submitted written evidence. Apparently the systematic demonization of disabled people by the British media is not considered important enough to justify Lord Leveson taking an interest.

Postscript 2: The Grim Truth

Also released today was a survey commissioned by the MS Society. Its conclusions were:

1 Briton in 4 thinks disabled people should expect to be discriminated against

1 Briton in 4 thinks we exaggerate our disabilities

1 Briton in 4 thinks we are being unreasonable if we expect to go to a bar or a club in a wheelchair

So that’s one Briton in four is openly disablist and proud of it.

Guest post: Disability benefits and the self-made mouth #badd2012

This is a guest post from @indigojo_uk that originally appeared here. It is reproduced here as part of Blogging Against Disablism Day 2012 as it's a write up about a disablist appearing on the radio decrying benefit claimants.

Last Saturday night, there was a debate on the Stephen Nolan show, a late-night phone-in on the BBC station Radio 5 Live, in which the former Apprentice contestant Katie Hopkins, who styles herself “the only candidate to say ‘no’ to Sir Alan” [Alan Sugar of Amstrad, who runs the TV series, The Apprentice], defended the government’s cuts to disability and housing benefits and Lisa “Lisybabe” Egan and one of the other callers tried to oppose her. Hopkins is clearly of the opinion that disability benefits are given out to an awful lot of people who aren’t really disabled or don’t deserve them, as shown by this tweet:

If people's disability benefit was handed out from the top rung of a ladder I reckon most would climb the ladder to get it.

— Katie Hopkins (@KTHopkins) April 25, 2012

Her stance was that people need to rely on their own resources rather than the state as we live in “austere” times, a line that she trotted out again when Lisa reminded her that people had paid National Insurance and that the whole idea of an insurance scheme is that it pays out when things go wrong. As for housing benefit, she said she did not see why the state should pay for people to live in the south-east, without apparently realising that the majority of housing benefit recipients are actually in work. She also posted this rant about child benefits on her blog, claiming (without the slightest evidence, of course) that “for so many of our poorer families in this country the child does not benefit at all – but rather the overweight mother guzzling McDonalds with her large brown Primark bag bulging at her feet”. You can listen to the show here for the next week. (For non-British readers: a Primark bag does not signify affluence.)

The issue of housing benefit is not the main concern here, except to state that the majority of recipients are in fact in work, and much of it pays for the shortage of affordable housing stock, the political decision to sell off council houses, and the runaway house price inflation caused by the credit boom which ended in 2008. Disability benefits are a burden society has always had in one form or another, because there have always been people whose physical or mental condition, whether temporary or permanent, either does not allow them to work, or makes them a less attractive proposition to employers for one reason or another. There are two separate categories of disability benefit: the Disability Living Allowance, which covers the cost of being disabled (such as for care and mobility aids) and is paid regardless of whether the recipient is working — indeed, it may help them remain in work — and the former Incapacity Benefit, which supported people who were unable to work, whether due to illness or a complication of their disability. Many of those who currently receive DLA would previously have been institutionalised, a practice which ended because the public realised that there were rampant abuses, the care was often impersonal, taking no account of people’s needs and abilities, and there was little dignity or privacy in many of them, besides the fact that the vast majority of people do not need to be housed apart from their families and the community. They were paid for out of state expense as well, and the land they stood on is now in many cases prime real estate and the grand buildings have been demolished or converted into luxury flats, so a return to that is going to be extremely expensive as well as unsatisfactory for all concerned.

Hopkins introduced herself by saying that “as a taxpayer” it had become obvious to her that people could live where they choose, have as many children as they choose, and smoke if they choose and have the state pay for the consequences of that, and that benefits should be a privilege and that people should “look to themselves” rather than the state to provide for them. She also invited the others to come with her on “claimants’ day” to the benefit office to see people collecting their benefits in their pyjamas. (I was on Job Seekers’ Allowance for two years and I almost never saw people in the Job Centre in their pyjamas.) Lisa asked her if, in the event of her getting cancer or having an accident, she would try to use the national insurance contributions she had paid, and Hopkins replied no, that she had savings that would provide for her family in such circumstances, money she had made by “grafting” and getting up at 5:30am every morning to provide for her family. Further enquiries reveal that Hopkins has epilepsy, and if she expects everyone to rely on themselves rather than the state, she should explain whether she has used the NHS to provide either the medication or the care she needs such as consultations to decide which medications to take and so on, and hospitalisation in the event of a severe seizure. In any case, she is not the only one who gets up at that time or earlier, and the majority of us do not make a lot of money because our jobs do not pay us that much. Hopkins got lucky; she does not mention on her website that she invented anything or has actually run a business doing anything other than selling advice to other businesspeople and public speaking. She is, in other words, a professional mouth, someone with opinions who gets paid for them.

When Egan asked her if she really was so cruel as to insist that people with cancer not receive help from the state, she fell back on her claim that the benefit system was too generous. She claimed that the people she “accosts” in their pyjamas get “home allowance” of up to £400, job seekers’ allowance, disability allowance “although they’ve managed to walk very well to the job centre”, and that it makes it not worth your while to work part-time. In fact, having been on JSA, the last time I received it, it was about £65 per week, which is about a day and a half’s average pay and just enough to buy the bare essentials for a week with. The reason it is “not worth your while to work” is because the money is deducted from your allowance and the allowance is stopped if you have two days’ work that week, even if it is a one-off booking through an agency during a slump, so unless you get a permanent job or a prospect of a lot of casual work, accepting a work booking could well leave you worse off. This is simply a consequence of the version of means testing that is used for JSA, and it is one of a number of circumstances in which means testing is a proven disincentive to work.

Nobody really confronted Hopkins with why some benefits need to be paid, and disability benefits in particular. We either pay for people with disabilities to live at home, and for the necessary adaptations and home care arrangements, or we pay for them to live in a care facility, when the land is bought, and they’re built, and all the cooks, cleaners, nurses, managers and others are hired, at huge expense — there is no third option, unless you count leaving them to die or leaving them to beg on the streets. Some people with disabilities can work, and others can if they are provided with some assistance, or if people help them to find a niche they can cope with working in, or helps them through (or past) the interview process, and the benefits made to these people may be more than recouped in the taxes they pay because they are then able to work. Others cannot, either because they do not have the intellectual capacity, or because their physical limitations make it impractical, or because their health complications or mental health problems mean they will not be able to work reliably, or because prejudice or inconvenience means people will not hire them. Of course, some people with disabilities are very wealthy and can afford to pay for care themselves, and some can run their own business, but this is not the majority and the costs of being disabled or of having a long-term medical condition add considerably to the cost of living, which is why we have a health service and a welfare system.

Hopkins clearly does not know much about what she is talking about here, only that she doesn’t want to pay to finance anyone else’s lifestyle. She promotes herself as some sort of “self-made”, self-employed person who “tells it like it is” as a social commentator and public speaker (reinforcing her “tough” image by boasting that she went to the Sandhurst military officers’ academy), but on this evidence that seems to consist of making bigoted and ill-informed comments that might go down well with all the well-paid drunks at a corporate party but do not add much to this discussion. There is a lot of talk about scroungers in pyjamas claiming benefits that were enough to live on comfortably without working, yet no solution has been given as to how to get the idlers off benefits without impoverishing people who are in real need and are unable to work; the government did not come up with one and neither has she. Yet again, British talk radio allows a serious and important debate to descend into a slanging match by giving undue prominence to an opinionated but uninformed guest — at the expense of the licence fee payer!

Image source: The Sun.