How Charging Policies Are Affecting Disabled People

By Anne Pridmore, Disability Labour Executive Committee Member

Disability Living Allowance started in 1992 it consists of two components the mobility allowance and the daily living part. The mobility component is £62.55 and the daily living part is £89.60 at the higher rate. In 2013 DLA was changed to Personal Independence Payment commonly known as PIP.

In 2019 SCOPE the National Charity did a report on the extra cost of being a disabled person. The findings of this report calculated this to be £583 per month. I am only using this report to try to illustrate that PIP was never meant to pay for care. It is also important to say PIP has never kept up with inflation.

In 2014 the Independent Living Fund closed and for the first two years central government awarded Local Authorities extra monies to use for the extra burden they had placed on them for social care. However the money was never ring fenced thus allowing Local Authorities to plug holes in their budgets due to yearly cuts.

Since the demise of the Independent Living Fund (ILF) and cuts to Local Authorities some English councils are quietly increasing charges which in effect they are clawing back from welfare payments and leaving some working-age adults with little more than £3 a day to spend.

People facing these charges fear they will be unable to heat their homes and feed themselves. One single man living with bipolar disorder said he may have to put his dog down because he will be unable to afford to look after it.

The High Court has ruled that Norfolk County Council breached the rights of a woman – known as SH – by discriminating against her when it changed its care charging policy.

Like many other councils, Norfolk has been making up for cuts in government funding by reducing the minimum income guarantee (MIG) that SH and others must be left to live on after any charges – and by taking into account the daily living part of their personal independence payment, when deciding how much to charge them for their care and support. Let me remind you once again that this non means tested benefit was never meant to pay for care but help towards the extra costs incurred by being disabled.

But the council’s new policy meant that SH and other disabled people in her situation with high support needs had a higher proportion of their income taken by the council than disabled people receiving lower benefits and those who were able to do paid work.

The court heard that SH, who relies on benefits for her income and has Down’s syndrome and physical impairments and health conditions, has never been able to earn money and there was “no prospect of her doing so in the foreseeable future”.

The new council policy meant that the charges she would have had to pay the council from her benefits – for day services, respite care and a personal assistant – would have risen from £16.88 per week to £50.53 per week.

This argument rested on two points. The young woman could not work and was therefore entirely reliant on benefits, unlike someone with lower support needs who might be able to work and whose earned income (according to the Regulations) cannot be taken into account when assessing how much they should be charged. In addition, her assessable income was higher because she qualified for the enhanced rate of PIP daily living allowance. 

The Council argued that the charging policy was not discriminatory as it applied to everyone.  The judge said that it was because the impact was different for people who were severely disabled. “The way the Charging Policy is constructed means that, because her needs as a severely disabled person are higher than the needs of a less severely disabled person, the assessable proportion of her income is higher than theirs”.

Whilst SH won the case the charges already paid are not being refunded.

Inclusion London said the ruling showed that the current system and the changes made by local authorities had had “a disproportionately negative impact on disabled people with the highest support needs”.

An Inclusion London spokesperson said: “This group of disabled people find it extremely difficult to get a job and maximise their income”.

“Moreover, they usually need social care support to meet very basic needs.

“They are also the least likely and able to challenge local authority charging decisions. Consequently, they are often pushed into deeper poverty.”

Inclusion London warned that DPOs across the country were reporting that their local authorities were implementing similar policies.

The Independent Living Strategy Group recently carried out a study of local authority charges for social care, exploring in particular whether and to what extent the practice of charging is undermining people’s wellbeing, the primary purpose of social care services as set out in the Care Act 2014. They examined some key features of the way local authorities implement charges and gathered evidence on the impact of charges on disabled people.

Charging disabled people for their care and support is driving many of them into debt and forcing them to cut their spending on food or heating, according to new research by a network of disabled people’s organisations and their allies.

The study found that 4 in 10 of those responding to a survey had experienced a substantial increase in charges over the last couple of years. Nearly half (43%) had had to cut back on their spending on food to pay for care and 2/5 of respondents (40%) said they had had to cut back on heating costs to pay for care and support.

The study concludes that charging for the support disabled people need to go about their daily lives is “unfair, counterproductive and undermines the primary purpose of the care and support system”.

The effect of charging, it says, is often to “drive disabled people into care poverty, and to create confusion, stress and complexity in an already overly burdened bureaucratic system” through what is effectively “an unhelpful and unnecessary tax on disability and old age”.

In Control’s helpline which offers information and advice to individuals, family members and organisation’s has seen a record number of enquiries relating to charging policies.

The stark facts of the funding crisis facing social care are that some councils “could run out of cash”  and it would require £2.1bn to keep provision at the current levels (allowing for increase in demand) by 2023/4 and £10bn to restore provision to what was available in 2010/11.  

Hammersmith and Fulham are the only Local Authority that do not charge.

To close let me remind you once again Personal Independence Payment is not means tested and consists of two parts – the mobility part and the daily living part.  From a personal perspective my mobility part all goes to Motability to pay for my car and the daily living part is no longer enough to pay my charges which now have to be subsidised from my Pension Tax Credit.

Anne Pridmore
Executive Committee Member

Once more the DWP has blood on its hands

The inquest into the death of Philippa Day concluded last week, and the verdict was announced on January 17th 2021. Philippa was a young mother who had type one diabetes. At the time of her her death she was experiencing mental health distress, including agoraphobia. Philippa had previous psychiatric admissions. Her Community Psychiatric Nurse had tried on numerous occasions to tell the DWP and Capita how unwell Philippa was and that she couldn’t leave her house to attend a face-to-face appointment at an assessment centre. But that advice was disregarded. 

Philippa was being moved from Disability Living Allowance to Personal Independence Payment. Her move should have been automatic, as her DLA award was an indefinite one. But the DWP lost one of the forms that Philippa returned and then blamed her for its loss. 

Philippa, who was only 27, was found unconscious with the letter from Capita beside her demanding she attend her interview. She died in hospital after two months in a coma. 

In his verdict, the Nottingham Assistant Coroner, Gordon Clow, listed 28 ‘problems’ with the administration of PIP which contributed to Philippa’s death. The inquest uncovered multiple failings by both the DWP and its contractor Capita. 

One particular document, an IPR, Internal Process Review, which was released to investigative journalist John Pring of DNS, Disability News Service, was crucial in forming the conclusions drawn by the Coroner. The DWP had fought against its release. When DNS reported its contents, the reasons for the DWP wanting to cover-up its errors was clear. The IPR showed that the DWP were aware of at least six serious mistakes made by their own staff and a further three by Capita staff. 

Philippa’s file did not have a marker showing that she needed extra support. The information given by her CPN was not recorded. DWP staff made two catastrophic errors.

The first was the failure of a DWP Decision Maker to consider all the available evidence the DWP had when they closed Philippa’s claim for PIP. The staff member who took Philippa’s last call to the DWP made the second serious error. During the call Philippa explains she’s starving, she has debts, because her DLA was not transferred to PIP and she has lost other premiums as a consequence. She says that she cannot survive without money. She was receiving just £61 per week to live on. 

I have listened to the recording of the call. Philippa was clearly distressed and crying. Her words still haunt me. But the DWP employee didn’t give Philippa any help. She had no concern for her welfare and obvious desperation. 

This case and that of Errol Graham, who starved to death in 2018 because he too had his benefits stopped, are clear evidence the DWP has blood on its hands. 

In October 2020, the Secretary of State for Work and Pensions, Therese Coffey, told a committee of MPs that the DWP had; ‘no duty of care or statutory safeguarding responsibilities towards vulnerable claimants’. If her statement is actually correct, it is scandalous that DWP legislation is so recklessly drafted. 

Surely these two deaths and countless others are the consequence not only of gross neglect, but criminal negligence?

In January 2019 the DWP revealed that over 21,000 claimants had died over a five-year period that ended in April 2018, whilst waiting for their PIP claim to be assessed. There is no reason to suppose that those deaths have lessened. So from April 2018 till now, January 2021, there will have been another 11,550 deaths, making the almost eight-year total to be over 32,000.

How can it be that the lives of disabled people matter so little? Clearly this doesn’t trouble the conscience of the current government. 

If these were deaths in industry, or on the railways, the Crown Prosecution Service would consider charges of corporate manslaughter. Why is the DWP still free to operate its practices of systemic disbelief without challenge? 

Why are the officials that failed to recognise the distress of claimants not being the subject of disciplinary action? Why has there been no overhaul of how claims are assessed? 

If the government asked disabled people to design a better, more humane system, we could easily do so. There is currently a [commission] of disabled people who are experts by experience doing just that. 

This rotten system needs a drastic overhaul. It’s demeaning and causes immense, preventable distress to disabled people at every stage of the application process. Forms don’t ask the right questions, medical evidence either ignored or not taken into account. Reports by assessors are frequently full of inaccuracies and often downright lies. 

The deaths of Philippa Day and Errol Graham must mark a watershed in the way disabled people are treated by the DWP.  On-going contracts with Capita, Atos and Maximus must end. The majority of claims should be decided on the paperwork supplied by claimants. There should be regular quality checks on how staff handle claims.

There needs to be a total re-write of staff guidance beginning with the premise that disabled people rarely lie about their impairments.Safeguarding and a duty of care must be part of every interaction with claimants.  

To ensure this happens, disabled people must be involved as Experts by Experience. We should train DWP staff so they not only understand our conditions, but treat us with dignity and respect. Staff should support us to claim the monies we are entitled to. 

Only when these changes are made will disabled people be safe from the harm done to us by the DWP. 

A Human Rights Approach to Disability Campaigning

Ten years ago the Equality Act 2010 came into being. It received Royal Assent on 8th April and came into law on the 1st October 2010. 

The Equality and Human Rights Commission, set up under the Equality Act 2006, has responsibility for the promotion and enforcement of equality and non-discrimination laws in England, Scotland and Wales. However, its powers are few. For instance, it cannot bring enforcement action, something the equivalent bodies in the US, Australia, Belgium, Canada and New Zealand can do.


We still don’t have equality in Hate Crime Law and we all know how inaccessible planes and trains can be. There are still too many buildings which are not fully accessible to us. 

We have moved on, in the majority of situations, from the outdated Medical Model of Disability. Most statutory bodies and organisations accept the Social Model of Disability, which sees that our difficulties are caused by the disabling world we live in. 


So how do we change that disabling world? Demonstrations and petitions can make some difference, but change is slow and cumbersome. So we need to think more imaginatively. 

Why not base our demands on our Human Rights? 


When the UN Special Rapporteur visited the UK in November 2018 he made it Abundantly clear the UK was in violation of its Human Rights obligations. 


I believe the only way we can assert our rights to disability equality and reasonable adjustments, as well as living our lives independently, is by ensuring all our campaigning is linked to our Human Rights.


There are six areas we need to focus on, all of which are depicted in the graphic below. It has disabled people in the centre – where we belong. 

Picture of a group of disabled people with text of 6 different types of Human Rights law for disabled people
The 6 tenets of Disability Rights are Human Rights

The UN Convention on the Rights of People with Disabilities – UNCRPD – is the foundation of the legislation we require and by making it part of UK law we would have the protections and freedoms we need. 


By strengthening the Equality Act 2010 and beefing up the powers of the EHRC, UK law would ensure enforcement of our rights, with the ability to challenge any type discrimination.


We need a rights based legal system, which is easy to access and will give support throughout the entirety of any reasonable case. Disability hate crime law needs strengthening to ensure parity with race and religious hate crime.


The rights enshrined in the EU Accessibility Act need to become part of UK law. The inclusion of all forms of transport is vital to ensure we can travel with ease and safety when we wish to travel.


We need a government department that looks after our rights and needs. The department must be run on different rules from other ministries. It should be overseen by a commission of disabled people, who will decide both policy and strategy.


But all of the rights above will only fully benefit us if we have the foundation of an equitable and secure benefits system. The system must use a holistic assessment of our needs. Of course, it will need to be properly funded with the same type of triple-lock guarantee given to pensioners. All of that will give us security and dignity. It would replace the current system, which demonises and denigrates us. 


The last Labour Manifesto contained a pledge to enshrine the UNCRPD in UK law. We could make that the starting point for our demands.


Why not set up our own disabled peoples commission, with representatives from every DPO in the UK? Then we can begin to focus on our aims and look at how we can begin and sustain our campaign. 


Will you make your new year resolution to campaign for human rights for ALL disabled people? 

Not Worthy of the Honour

On Friday the world awoke to leaks about the Queen’s New Years honours list.  Of all the people on this list, one name caught my eye.  Iain Duncan Smith is to be knighted.  I have to admit my jaw dropped.  I don’t know why I am surprised.  I suppose he is to be knighted to services to unlawful government sanctioned deaths.  Extermination of the poor and disabled.

 I have no printable words to describe my feeling and those of my colleagues and friends across the United Kingdom. I know he is probably responsible for my PTSD which started once I applied for help to enable me to stay in work.  DLA was, so I thought, there to help me when I started to experience the detrimental effects of my hidden disability. Then the DWP repossessed my Motability car due to their mistake, I might add.

 However, as tragic as this was for me, at least I was alive and could mitigate against it. The whole process left me with recurring PTSD every time the DWP contacts me. I believe giving IDS a knighthood is a kick in the teeth to every disabled person who has applied for benefits. Every Tory MP who has supported his savage regime is equally culpable in the damage done to so many of us.


The only recognition I would want for this cruel man is to recognise him as being responsible for for the deaths of 120,000 people. He led the the political choice of austerity and turned it in to an opportunity to recoup money lost by bankers, through cuts to services like social care and benefits such as Personal Independence Payment, Employment and Support Allowance and Universal Credit. 

Let him revel in this “honour” for as long as he holds it.  I am going to work with others to ensure when a Labour government is elected, he is tried for crimes against disabled people, the poor and disadvantaged. His title should be withdrawn.

At this moment in time, our government is rogue. The next several years will take all our courage and then some.  We need to be looking at all the methods we can use to bring the government to heel. Surely there should be more scrutiny of such honours? This award makes a mockery of the honours system. Disabled people are citizens too. We have been continuously attacked for having the audacity to be born with or having acquired an illness or impairment which left us to be victims of political choice.


I want IDS to be on notice, do not mistake weakness for helplessness. Those who followed us his wake, bear responsibility too, Crabbe, Green, Gauke, McVey and Rudd should also be held accountable. John Pring from DNS has made an excellent argument. https://www.disabilitynewsservice.com/dwp-the-case-for-the-prosecution/


 Get some rest whilst you can comrades, for the New Year will be the start of the fightback. It will need every one of us. Either by supporting those who are struggling or by taking the fight directly back to the Tory government. A fight for our very lives, for our rights. We need to do everything we can to stop this government eroding our liberty and our dignity.

UK in clear violation of Human Rights obligations

The recent report from Philip Alston the UN Special Rapporteur makes shameful reading. 

The UK is the fifth richest country in the world,  yet Alston reports; “One fifth of its population (14 million people) live in poverty, and 1.5 million of them experienced destitution in 2017.

Policies of austerity introduced in 2010 continue largely unabated, despite the tragic social consequences. Close to 40 per cent of children are predicted to be living in poverty by 2021. Food banks have proliferated; homelessness and rough sleeping have increased greatly; tens of thousands of poor families must live in accommodation far from their schools, jobs and community networks; life expectancy is falling for certain groups; and the legal aid system has been decimated.”

This is a damming indictment of the political choice of austerity, made by Tory Government. It’s important that Alston has included the destruction of the legal aid system. Without access to justice it’s so much harder for those who are victims of flawed decision making by Tory Ministers to challenge decisions at either Tribunal level or in the Courts.

Alston goes on to say; “The social safety net has been badly damaged by drastic cuts to local authorities’ budgets, which have eliminated many social services, reduced policing services, closed libraries in record numbers, shrunk community and youth centres and sold off public spaces and buildings. The bottom line is that much of the glue that has held British society together since the Second World War has been deliberately removed and replaced with a harsh and uncaring ethos.”

Clear and evidential proof that the hostile environment towards disabled and sick people really does exist.

Alston’s report is very clear about the change in the UK; “British compassion has been replaced by a punitive, mean-spirited and often callous approach apparently designed to impose a rigid order on the lives of those least capable of coping, and elevate the goal of enforcing blind compliance over a genuine concern to improve the well-being of those at the lowest economic levels of British society.

It might seem to some observers that the Department of Work and Pensions has been tasked with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens, rather than seeking to respond creatively and  compassionately to the real needs of those facing widespread economic insecurity in an age of deep and rapid transformation brought about by automation, zero-hour contracts and rapidly growing inequality.”

Alston writes about the effects of austerity on a number of different groups of people. His evidence is relation to disabled people is unambiguous; “Nearly half of those in poverty – 6.9 million people – are from families in which someone has a disability. Persons with disabilities are more likely to be in poverty and are more likely to be unemployed, in insecure employment or economically inactive. They have also been some of the hardest hit by austerity measures. As a result of changes to benefits and taxes since 2010, some families with disabilities are projected to lose £11,000 on average by 2021–2022, more than 30 per cent of their annual net income. People with disabilities told the Special Rapporteur repeatedly about benefits assessments that were superficial, dismissive, and contradicted the advice of their doctor.”

The Government’s response has been woefully lacking with Theresa May actually having the nerve to “disagree with the report” when she was challenged at PMQs by Margaret Greenwood the Shadow DWP Minister. Amber Rudd the new DWP Minister called the report ‘disappointing’.  Alston has, quite rightly,  accused the Government of “remaining determinedly in a state of denial”.

 Alston makes it very clear that; “Considering the significant resources available in the country and the sustained and widespread cuts to social support, which have resulted in significantly worse outcomes, the policies pursued since 2010 amount to retrogressive measures in clear violation of the country’s human rights obligations.”

 He doesn’t believe Brexit will improve things, saying; “If Brexit proceeds, it is likely to have a major adverse impact on the most vulnerable”.

Alston’s whole report is a blunt and brutal condemnation of the policies of successive Tory governments.

Labour has already promised that it will implement the UN Convention of the Rights of Disabled People. Using the convention as a basis for changing the law and improving the lives of disabled people can’t come soon enough.

Disabled people and social security austerity: structural violence and social murder

Guest Blog by Dr Chris Grover, Department of Sociology, Lancaster University

Britain has endured nearly a decade of austerity that has had a devastating impact upon the income of and disabled people. It is estimated, for example, that the result of benefit and tax changes between 2010 and 2017 by 2020/21 will be that households with a disabled adult andchild will lose £5,500 per annum; households with a disabled child £3,300 per annum and households with a disabled adult £2,400 a year. These figures compare to £1,000 per annum for households with no disabled people. Even before the George Osborne’s 2015 Summer Budget that was structured by a poor lawarian approach to benefits for disabled people, it was estimated that in the five years between 2013/14 and 2017/18 disabled people would collectively lose £28 billion in social security payments.

There is mounting evidence that these cuts to the incomes of disabled people and the ways in which they are being secured, for example, through increased conditionality and demeaning and inaccurate eligibility testing are maiming and killing disabled people. So, for instance, disabled people’s organisations have gathered evidence about deaths related to austerity, for example, Calum’s List and We are Spartacus (see also Remember the Dead).Quantitative evidence suggests that for every 10,000 Employment and Support Allowance Work Capability Assessments, there are an additional six suicides, 2,700 reported cases of ‘mental health problems’ and the prescribing of 7,000 anti-depressant items. Other evidence suggests that a majority (66 percent) of ESA recipients have had thoughts about killing themselves, while nearly a half (43 percent) have attempted to do so. This compare to 22 and 7 percent respectively of people in the general population

Such observations point to the fact that austerity can be understood as a form of structural violence. Johann Galtung argues that violence can be understood as the difference between the potential and the actual, between what is and what could be, and that violence occurs when detrimental impacts are known and avoidable. Structural violence, he argues, is ‘built into the structure and shows up as unequal power and consequently as unequal life chances.’ Austerity can be understood as violence because, as the above observations suggest, it widens the gap between what could be and what is for disabled people. It can be undersoodas structural violence because, not only has its effects been known for many years, it is a political choice and, therefore, not inevitable. Austerity is also reproducing unequal life chances. It is, for instance, contributing to increasing povertyfalling living standardsprecarious wage-labour and deepening disabilised poverty.

As noted above, austerity is also contributing to the deaths of disabled people. Drawing upon the 19th century work of Friedrich Engels, this can be described as social murder. Engels’ concern was the effects of industrialisation – low wages and poor working conditions – upon working class people. He argued that because the impacts of such conditions were foreseeable and avoidable they could be understood as social murder:

when society places hundreds of proletarians in such a position that they inevitably meet a too early and an unnatural death, one which is quite as much a death by violence as that by the sword or bullet; when it deprives thousands of the necessaries of life, places them under conditions in which they cannot live – forces them, through the strong arm of the law, to remain in such conditions until that death ensues which is the inevitable consequence – knows that these thousands of victims must perish, and yet permits these conditions to remain, its deed is murder just as surely as the deed of the single individual…

Given the evidence outlined above, similar arguments can be made about contemporary austerity – that through it the state (rather than bourgeoisie as Engels argued) is killing and maiming disabled people. It is doing this by reducing disabled people’s incomes andsubjecting them to an entitlement-testing regime that is emotionally damaging through the evocation of fear and stress and which is structured by harsher conditionality and, as a consequence, financially more punishing benefit sanctions

Engels argues that social murder is an ‘offence… more… of omission than commission.’ While, as the Disabled People Against Cuts recognise, ‘dead people don’t claim’, live people do consume, do provide jobs for other people (e.g. work capability assessors; social workers, ‘carers’ and so on) and they do have macro-economic effects (e.g. putting downward pressure on wage levels through competing for wage-labour). Governments, therefore, arguably have an interest in not deliberately killing and maiming disabled people. However, the treatment of disabled people under austere social security policy in the past decade suggests that, like many other impoverished people, their lives for ‘count for nothing’. The result is an enacting of social violence upon disabled people, the consequence of which for some is social murder.

This presentation was given at; “Social death: the impact of austerity and poverty”, organised by the land and health campaigning group Taxpayers Against Poverty (TAP) on 1st May 2019, Labour Day, at Portcullis House, on the Parliamentary Estate, Westminster. 

Click here for the video for the event and the individual presentations. 

Promoting disability or creating discomfort?

Recently, Ability Access posted an image of a woman amputee.

Facebook decided it was inappropriate and blocked the image.

Facebook told Simon Sansome who runs the page: “You will have to understand that some people see disability as disturbing. You will have to think about it like that.”

The Facebook staffer then said, “I have never come across a page that promotes disability.”

How does posting an image of an amputee ‘promote disability’? The image is of Vicky Balch. A woman who is body confident. She was a passenger in the Alton Towers crash and is now an amputee. I think it’s an awesome image. Full of strength and beauty. It shows Vicky coming to terms with her altered body.

Facebook has apologised. Accepting it was wrong to censor the image. That Facebook originally banned the image is worrying.

Disability Labour was proud to support the protest by DPAC outside Facebook’s London HQ, #DisabilityNotDisturbing had some wonderful images on their banners.

There is often debate on websites such as The Mighty and Psychology Today about ‘inspirational porn’.

Are body confident images of disabled people positive and supportive? Or are they negative and damaging?

Many disabled people hate the ‘inspirational’ tag.

Looking at the photo and reading the information about it, being photographed was Vicky’s choice. She was happy for Ability Access to use the photo. So, what’s the problem?

To suggest that the image ‘promotes’ disability is missing the point. The photo doesn’t show amputation as a choice.

It shows that becoming an amputee doesn’t take away the person you are inside.

I’m concerned with Facebook’s suggestion that some people might find disability disturbing.

Society is slow in accepting disabled people as a different ‘normal’. For someone born with Down’s Syndrome, that’s their normal. My normal is using a wheelchair.

If that disturbs other people, can I suggest that they look at themselves to ask why they feel that way? Life is not perfect, despite the pressures of advertising and aspirational blogs. We all have daily struggles, be it at work, living with a partner or raising children.

Yes, there are people who spend thousands of pounds on plastic surgery and designer everything else. That is their choice. But when life throws you a curve ball that includes being disabled, we have two choices. We either fight with and hate our bodies and ourselves so much that we land up being angry and self-destructive. Or we accept what has happened to us and learn how to live with that.

Learning acceptance is not about giving up or giving in. It’s about saying: OK, this is where I’m at, how can I make changes to ensure I have a good life and can do the things I enjoy? Adjustment is not always easy. We may have to learn new skills, or find new ways of doing things. We may need therapy. But we can have worthwhile lives.

As part of coming to terms with a disability, some disabled people find ways of being body positive. What is wrong with a photo of a woman comfortable in her body, despite losing a limb?

When I first looked at Vicki’s picture, I didn’t notice her amputated leg. Isn’t that how people should see disability? Not the core of someone’s existence, but one of the sum of parts we all are?

Facebook decided it was inappropriate and blocked the image.

Facebook told Simon Sansome who runs the page: “You will have to understand that some people see disability as disturbing. You will have to think about it like that.”

The Facebook staffer then said, “I have never come across a page that promotes disability.”

How does posting an image of an amputee ‘promote disability’?

The image is of Vicky Balch. A woman who is body confident. She was a passenger in the Alton Towers crash and is now an amputee. I think it’s an awesome image. Full of strength and beauty. It shows Vicky coming to terms with her altered body.

Facebook has apologised. Accepting it was wrong to censor the image. That Facebook originally banned the image is worrying.

Disability Labour has supported the recent protest by DPAC outside of Facebook’s London HQ called #DisabilityNotDisturbing – there were some wonderful banners too!

There is often debate on websites such as The Mighty and Psychology Today about ‘inspirational porn’.

Are body confident images of disabled people positive and supportive? Or are they negative and damaging?

Many disabled people hate the ‘inspirational’ tag.

Looking at the photo and reading the information about it, being photographed was Vicky’s choice. She was happy for Ability Access to use the photo. So, what’s the problem?

To suggest that the image ‘promotes’ disability is missing the point. The photo doesn’t show amputation as a choice.

It shows that becoming an amputee doesn’t take away the person you are inside.

I’m concerned with Facebook’s suggestion that some people might find disability disturbing.

Society is slow in accepting disabled people as a different ‘normal’. For someone born with Down’s Syndrome, that’s their normal. My normal is using a wheelchair.

If that disturbs other people, can I suggest that they look at themselves to ask why they feel that way? Life is not perfect, despite the pressures of advertising and aspirational blogs. We all have daily struggles, be it at work, living with a partner or raising children.

Yes, there are people who spend thousands of pounds on plastic surgery and designer everything else. That is their choice. But when life throws you a curve ball that includes being disabled, we have two choices. We either fight with and hate our bodies and ourselves so much that we land up being angry and self-destructive. Or we accept what has happened to us and learn how to live with that.

Learning acceptance is not about giving up or giving in. It’s about saying: OK, this is where I’m at, how can I make changes to ensure I have a good life and can do the things I enjoy? Adjustment is not always easy. We may have to learn new skills, or find new ways of doing things. We may need therapy. But we can have worthwhile lives.

As part of coming to terms with a disability, some disabled people find ways of being body positive. What is wrong with a photo of a woman comfortable in her body, despite losing a limb?

When I first looked at Vicki’s picture, I didn’t notice her amputated leg. Isn’t that how people should see disability? Not the core of someone’s existence, but one of the sum of parts we all are?

The Proof is in the Pudding

That was premise of The Great British Bake off and many a proud cook. The same could be said for this government’s treatment of disabled people.  When Marsha De Cordova MP asked her Parliamentary Question; (quoted directly from the website theyworkforyou.com)

NHS survey data show that, under the Conservatives, 43% of those in receipt of ESA have attempted suicide. Leading academics, disabled people’s organisations and clinicians have raised concerns that the work capability assessment is causing a mental health crisis.”

The WCA is not fit for the 21st century—it is outdated and is causing preventable harm—so I ask the Minister: is it not time that the Government scrap the WCA that is pushing so many people to suicide?”

It was shocking to hear the statistic and it will fuel the anger felt across the country. 43% of people in receipt of ESA have been so utterly devastated that they wanted to die. It leads you to wonder how many have succeeded?

Unfortunately, when it came time for her response, Sally Newton, Minister responsible for the DWP, first blamed A past Labour government for instituting the WCA in 2008. Followed by the fact that they, the Tories have been following independent advice to and try reform it, for 11 years.

Can you imagine a manager in a private company seeing that 43% of a company’s product was bursting into flames when it was plugged in then ordering a step up in production?  They would be more likely to stop production followed by the person in charge being put on gardening leave and speed dialing their law firm. However, this kind ridiculous response has become standard policy from the current government:

Our chief medical officer, Professor Gina Radford, has made it absolutely clear that the NHS data shows there is no causal link between applying for benefits and people tragically taking their lives.

There it was, the standard “oh no it isn’t” response in a debate. There are many people who have told ministers what is happening.  DPAC (Disabled People against the Cuts), ROFA (Regain Our Futures Alliance), and the UN amongst many, many others. The government chooses not to listen.

The darker reality of this statement is that the current government is utterly devoid of compassion. 5% of lives lost to suicide is too many. To add insult to injury, they allowed the decimation of mental health services so there is little help out there for those who are severely depressed or suicidal.

Unfortunately, they don’t sell compassion on eBay or we all might chip in to buy some and send a true care package to Number 10. 

Kathy Bole Co-Vice Chair
First published 17th October 2018

A Reminder of a Year Well Spent

I haven’t posted for a while and it’s due to many factors, the biggest of them is the changing state of my spine. I could focus on that, the idea that I might not return to work, not being with some of my family at Christmas or not being able to travel as freely as I once did. Much of social media at this time is spent thinking about all the awful things that are happening, especially for those of us who are witnessing “mans’ inhumanity to man”. (Thank you Rabbie Burns.)

 

Whilst travelling through Facebook, someone shared the jar concept of blessings. In a nutshell, or jar, every time something good happens to you, write it on a small piece of paper. Fold the paper and put it in a large jar, with a lid. Keep doing this until the end of the year. Only when you get to 31st of December, can you open the jar and read all the good this year has brought.

 

I’m not usually saccharine sweet when I get to this time of the year. I have become a bit grumpy. I believe this started after the first blushes of being a county councillor wore off. Back in 2013 when I was able to travel in a power chair without pain. When the Councillor Services team made the chamber and the councillors area more accessible. It was a great start, until I was patronised and made fun of, in a sexist, ablest way by my supposed peers. I was relegated to the bottom of the pile of our group. It came to a point that even the stuff I was an expert at was pushed aside.

 

Then after a nasty episode of bullying near me, I began to realise that everything I thought the Labour Party stood for, wasn’t truly at the heart of it, until Jeremy Corbyn came along. What I didn’t realise was that our own party would fight against him, because he wasn’t exactly the model of leader that everyone wanted. You have probably gotten to the point that you are thinking to yourself, where is the jar, the explanation of the jar theory. Wait a while, grasshopper. (This is reference to a TV show, Kung Fu.) I’m getting there.

 

A little more than a year ago, I had to make an unpopular move to take a stand against bullying. I was afraid, because now I had been torn apart by becoming disabled as my body started to break down. The government was also tightening the screws against every disabled person who dared to live their life. When we got mouthy, the screws turned deeper. When we dared to protest, we were arrested and and the police made sure that we were sanctioned. Vilified in the media, frightened to go to the shops and be like everyone else only to be recorded in a food store, to be caught out, because the government spies on us going out of our houses.

 

So I was afraid, but deep inside, I still was an old school Trade Unionist and knew the difference between right and wrong. And bullying is definitely wrong. So I stood against it and received no help from the Labour Party, not locally, not regionally, and I am not sure it went nationally but I am sure we wouldn’t have gotten help there either.

 

Things didn’t go the way I thought it would. I was upset, I was isolated. I gave up for a while but I refused to give up completely. And then my Labour Group made me the shadow cabinet member for disabled people. The first one in any council near by. I didn’t crow about it, it made it a little better, I gained some self worth back.

 

Almost there, grasshopper, (see above reference) just a little longer.

 

Last December I joined Project 125, which was a great idea, and still is. Then I began to find other ‘disabled people’ (who followed the social model of disability) (one blessing folded and put in the jar) and the virtual friendships started to blossom (another blessing folded) and a common idea started to smoulder into action (another blessing folded and put in the jar.)

 

Those friendships started to grow. We started to help each other, started to support each other in tangible ways(another folded paper) and in very real terms. It far outweighed anything the ableist world could throw at us. We stuck by each other. Worked out differences (as best we could because everything we are taught about being good friends was created in the same space, face to face. (we used technology to overcome disabilities and distance) (another fold) We started to get together virtually more frequently, against a common foe who didn’t do what we needed. (I think you are getting the idea, another fold) We mounted a campaign and kept meeting and focused on one task, to make the Labour Party let us in. (Another fold)

 

On a whim, we offered to help try and reach the right people, we were building confidence and a don’t ask, don’t get mentality (another fold). We sat with people who really wanted help in getting things better and we decided to trust just a little more (another folded blessing) and we pulled off something no one who knew us would ever have believed we could. This is a two fold deal for reasons those of us who were there knew. All of our skills, pulling together made it better for people who noticed the difference. 


And then winning back our organisation, Disability Labour, so that we give back to other disabled members who have been let down about being let in to our party, our only hope came before our greatest victory, we made the party conference better, because we worked together as a team. ( another fold, and another) we gained momentum but we had so much organisational stuff to do, to work on our first tentative links into a system that is designed to be against us. But because our victories were hard won, the damage that society has done to us has come at a price. We have won a battle but the war is far from won, grasshopper.

 

As much as we would all have liked to have the dog eat dog world of ableism stopped dead in its tracks, it will not be fixed in a day. Our party is still not a safe place and just because we have to be cautious and protective of this burning flame, we must realise that the people that we were before we were official, we still are. We are not hiding the flame for a few of us. We are trying to protect this new thing from the same bullies that are baying for our Leader’s blood. We know that his vision is not accepted by those who have learned to play a cut throat game of hurray for me and screw you.

 

Just as we trusted our membership to see our truth, do not turn the mistrust into ourselves. Have patience, I know how bad it is and I am really frightened too. I have to step away so that I am able to rest. I am not as strong as I was. I see how people are being treated, worse than animals, we are being hunted by the government, I fear I will not be able to sustain the fight, I draw on your strength to keep moving forward. I know that things are changing, but not quickly enough, we have to help get the party back to what it is meant to be about. But we have to place our trust in each other, I will try to keep folding those blessings or rather victories and I will continue to try and walk forward and try to keep focused. Because we have to win the fight of our lives and those who can’t fight are depending on us. All of us and I look forward to all of the victories we can put in the jar.

 

Kathy Bole Co-Vice Chair

First published 31 Dec 2018

Words Matter – Spoonie or Energy Impaired

Last year I got an invitation to participate in the Chronic Illness Inclusion Project. It’s run by a Disability Labour member, Catherine Hale who I’ve now got to know well. 

 

The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.

 

‘Spoonie’ as a concept first came about in 2003 via a blog post by Christine Miserandino

 

More recently an article in The Mighty used the analogy of a mobile phone battery to describe Energy Impairment 

 

The choice of a spoon as part of our DL logo was deliberately chosen as an image and illustration of our everyday lives.

 

We use spoons / spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this makes sense to us and it’s easy to explain to others, it’s not one that is easily recognised by medical professionals.

 

CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.


Whilst I love using the term spoonie and and have badges with a spoon on them, I can understand why some people think that we need different terminology.

 

Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.

 

We’re not “just tired” as people seem to think, it’s more fundamental than that.  It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.

 

For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I waste spoons getting dressed when I don’t have to go out that day. 

 

How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”?

 

We need to explain to medical and other professionals that being energy impaired has a huge impact on us everyday. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.

 

Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.

 

If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks. 

 

That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them. 

 

We talk about people having a visual or hearing impairment so why not talk about being Energy Impaired?

 

I’ve started to use the term Energy Impaired in papers that I write, and in the way I talk about my own conditions. I think that by doing so it could encourage medical and other professionals to better understand the way my various diagnoses impact my life

 

I want to encourage Disability Labour members and supporters to use Energy Impairment as a descriptor. It is a simple concept to grasp and could easily be used as part of describing disabilities within documents, training and policy. 

 

If disability bloggers and activists use the term Energy Impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.

 

I hope and believe that it can help to change the way disabled people are perceived.  


Fran Springfield Co-Chair