We are hearing more and more from people who are not getting decisions on #WCA or #PIP outcomes in writing, but by phone. It is your statutory right to have decisions in writing.
This applies to a decision declaring you are fit for work, in the support group or in the Work related activity group.
It is important to have these decisions in writing to challenge decisions, complete a mandatory reconsideration ( where you disagree with a decision and want it looked at again) or to head off the ever growing bullying of the #DWP and Job Centre Plus who are calling those in the support group for work focused interviews and claiming these are mandatory- they are not.
We also want to stress again that any calls should be recorded or time noted and person’s name taken and that all documents or written communication should be sent by recorded post or email, where you will have a copy
Please pass on any incidents or problems you may have had in any of these areas to firstname.lastname@example.org
I have been in receipt of Disability Living Allowance since 2000, and have had to reclaim every five years. As such I was sent a DLA reclaim pack prior to my claim coming to an end on the 23rd of June 2014. Initially I thought I had been sent the wrong form and checked that I was to complete the DLA reclaim form and not the new Personal Independence Payment.
For various reasons known to many of us the form took so much time to complete. Filling bits out here and there made even more difficult for me due to dyslexia. I spent hours trying to track down an electronic copy to fill in and eventually ended up scanning pages into my computer manually.
I finally finished the form and sent it off with every bit of medical evidence I had including a letter of support from my GP and waited.
At the beginning of August I opened my post box to see the dreaded brown envelope and my immediate thought was that it was a reassessment for ESA. It wasn’t it was a letter from DWP DLA Blackpool informing me that I was not entitled to claim DLA however my claim could be ‘treated as a new claim for PIP’.
Obviously confused by this I rang the DWP and asked for an explanation to be told that as the reclaim form had arrived at their office 6 days after the end of my claim I had fallen outside of the reclaim period and my DLA had ended on the 23rd of June. However, the information provided was enough for the claim to be treated as a claim for PIP and that I should wait for the PIP Unit to get in touch with me.
I asked for a Decision Maker to look at the decision again and was again told over the phone that my DLA had ended but the claim would be ‘treated as a claim for PIP’ and again to wait. The DM also suggested I might want to contact my MP about this issue, something I have never had a DM say to me or others I know.
I duly contacted my MP, to be honest in a bit of panic as I had been using my DLA to cover the £20.00 shortfall in my Housing Benefit as a result of the Bedroom Tax. My only relief was that I could never afford to use the mobility allowance for a Motability car and so at least I didn’t have my car removed. Although finding the money to keep it on the road I knew was going to be very difficult.
I explained what had happened and asked for someone to get back to me as soon as possible. Two weeks passed so I emailed again, this time even more stressed and panicked. Another week went by so I emailed again this time not so polite and deferential.
Finally, I got a response but to my previous email not the stroppy one and so felt even more stressed that I had not exactly made myself likable to a woman I was asking to help me. So immediately emailed again to apologise.
What followed was a series of emails between me and the person in her office who was tasked with ‘Welfare Problems’ arguing over where PIP was being rolled out and to whom, the understanding of various Regulations and Statutory Instruments (pretty much a pissing contest) which yet again impacted on my growing stress levels.
I really didn’t expect when I got in touch with my MP I would know more than the person I was dealing with and so ended my communication with her office with a ‘I thought you might be able to help; I now realise I was barking up the wrong tree’.
Apparently when you do this some people’s ego goes into overdrive, I was mistakenly copied into emails between my MP and the person ‘dealing’ with my case. In which he stressed again and again ‘I am right!!!’. I got one last email from my MP a short one liner “I am sure he is right, sorry”’ At that point I didn’t know who to be angrier with the DWP or my MP’s office who thought it was more important to be right than actually help a constituent.
By this point over a month had passed since my DLA reclaim had been rejected, financially things were getting very tight. I had to borrow some money to pay for the car tax was worried about winter because my home has rotting window frames and an inefficient heating system. I was starting to think that I would just have to give in and make a fresh claim for PIP and forget about the weeks I had already been waiting, which was little comfort as daily there were reports about how badly PIP was rolling out and the massive backlog of claims to be processed.
Despite trying and trying to get through to speak to someone at PIP the phone was either engaged or I was placed in a queue which I couldn’t afford to be stuck in on a mobile phone.
I checked my emails to see yet another email from my MP’s office where he detailed what he thought the issues were with the reclaim. After reading it I realised that right from the beginning he hadn’t actually grasped what my problem was and was just giving me general information. I explained again and also apologised for being abrupt but that this situation was having a very real impact on my health
I was graciously forgiven and then told how amazing my MP is and what a good job she does working with disabled people and that he himself had been congratulated for his breadth of knowledge on the subject at a parliamentary meeting. I bit my tongue because I realised even if my MP was of no use it was better for the DWP to think that an MP was involved in my case the hope being that they wouldn’t mess me about any more than they already had.
I managed to get through to someone in the PIP Unit who told me that the information about being ‘treated as a PIP’ claim was correct and that she would get someone to contact me urgently to explain the process and let me know what the progress of my claim was.
Three weeks went by and the promised urgent phone call hadn’t materialised. I contacted the Unit again only this time to be told the exact opposite of what I had been told previously. My stress and frustration at this point was going through the roof so asked to speak to a manager. I was put through to a Manager who officiously told me that both the letter and information received about the claim being treated as a PIP claim was incorrect and that the letter I had received hadn’t been ‘worded properly’ and he advised me to contact the New Claims department of PIP to request a claim form.
I was stunned, and again not my finest hour but I do remember saying rather forcefully that if he thought I was going forget about weeks of waiting he had another thing coming and did he enjoy earning a wage deliberately misinforming people and making their lives even more complicated and stressful than it already was. Again emailed the MP’s office to update them on this new contact. Then went for a drive to try and just get away from thinking about it and calm down. It was really hard not to feel that this wasn’t a deliberate tactic of the government to make it as difficult and as stressful as possible to dissuade people from claiming Social Security. The news was getting worse regarding the PIP roll out and peoples experience of it.
I then managed to track down what ‘treated as a claim for PIP’ meant.
SI 2013/380 – Interchange with claims for other benefits
S25 (4) Where it appears that a person who has made a claim for disability living allowance or attendance allowance is not entitled to it but may be entitled to personal independence payment, the Secretary of State may treat any such claim alternatively, or in addition, as a claim for personal independence payment.
(5) In determining whether the Secretary of State should treat a claim as made alternatively, or in addition to another claim (“the original claim”) under this regulation the Secretary of State must treat the alternative or additional claim, whenever made, as having been made at the same time as the original claim.
Universal Credit, Personal Independence Payment, Job Seekers Allowance and Employment Support Allowance (Claims and Payments) Regulations 2013.
I sent this to my MP’s office and said that given this information could they please contact the DWP urgently and ask them what the status of my claim was. Which they finally did and on the 19th of September 2014 I finally found out that yes my DLA claim had lapsed due to it reaching the DWP 6 days late but my claim was being treated as a claim for PIP and would be backdated to the date of claim (for DLA).
They went on to apologise to my MP for the lateness of their response and gave an excuse as to why there had been a delay in dealing with my claim but nowhere did they express any acknowledgment to me and nor did my MP think it was worth pointing it out.
That was the last contact I had with my MP’s office, she had been little to no help, had increased my stress and anxiety and forgot to delete my address on an email thread where she had asked if her staff member could ‘bear getting in touch with me’. I had to spoon feed this person what the issue was and track down the Statutory Instrument that related to treating one claim as a claim for different benefit. The only thing I couldn’t do is make the DWP treat me with the same respect that they treated my MP.
I then waited till February 2015 for a Disability Assessor to come out to my home and assess me, then waited again for the outcome. It was an extremely hard winter my car broke down, I couldn’t’ afford to heat my home and my diet was the worst it has ever been.
In April I got fed up of waiting so rang for an update to be told that a decision had been made and money was in my bank. I had not been awarded the mobility component, the thing that I needed. So asked them to resend the original decision letter as well as an explanation has to how the Decision Maker had reached that decision.
I got that letter at the end of May the next day I got another brown envelope through the post informing me that after a Mandatory Reconsideration the decision remained the same! A Reconsideration I hadn’t asked for, but had impressed on the person I had last spoken to that I needed to have sight of the original decision and reasons because time was running out for me to decide whether or not to ask for a Mandatory Reconsideration and gather any further evidence I could in support of my claim.
I can only assume that someone at the DWP realised that my claim had been a cock up from start to finish and were covering their backs. I was at an extremely low point emotionally and mentally and so took the decision to not pursue it to appeal or even to argue about the fact that I hadn’t asked for an MR. I felt too deep into a Kafka nightmare to be able to do anything other than accept what I had been awarded.
My PIP claim from start to finish took 42 weeks, 42 weeks of hell that I never ever want to revisit. Even writing this has brought back some of the anger and frustration I felt at the time.
Do I regret not questioning the mandatory reconsideration or pursuing it to Appeal? Yes, I absolutely do, my car has finally reached the point of no return and my health has progressively worsened. I’m waiting for a neurosurgical consult and another MRI, being without a car has had a huge impact on my ability to take care of myself in terms of shopping, engage with anyone outside my home and getting to GP and Hospital appointments is now a major mission of planning and physical effort which I cannot sustain. So yes I do regret it but then again at the time I don’t know if I would have had the strength to have pursued it to the end and I suppose at least I am in receipt of the Living Allowance which provides enough of a cushion to start this whole sorry process all over again.
Another call for evidence that has been hidden under the radar
The Public Accounts Committee are inviting evidence to the inquiry on contracted out health and disability assessments (i.e Maximus, Atos and Capita).
If you or someone you know has had an assessment for Employment Support Allowance (ESA), Personal Independence Payments (PIP) or a Work Capability Assessment, the Committee would like to hear about your experience.
The deadline for written submissions is 10am on Thursday 28 January 2016. Alternatively you can tweet your comments to @CommonsPAC on Twitter with the hastag #disability.
LeafletingFind people in your area to leaflet your town, train station, church or community centre
Share one of our Stop Trident videosThese are videos of politicians, journalists and celebrities talking about why they support the demo
Donate nowto help fund this momentous demonstration
Why are we doing this?
CND is calling a national demonstration to protest against Britain’s nuclear weapons system: Trident.
The majority of the British people, including the Labour leader Jeremy Corbyn and other parliamentary party leaders, oppose nuclear weapons. They are weapons of mass destruction that can kill millions. They don’t keep us safe and they divert resources from essential spending.
Join us to say No to government plans to buy a new system at a cost of over £100 billion. Parliament will be voting on this in 2016. So this is urgent – we can’t delay.
Let’s get the message out loud and clear: we don’t want Trident and we don’t want a new Trident.
Media packPromote your local Stop Trident events. Includes template press release, social media guide, and graphics
Having problems paying the punitive bedroom tax and live in Lambeth? Work for them for free for 3 months and all will be solved. Lambeth sent out a series of letters last year under the heading of ‘Get set Go’. The letters announced:
‘an exciting opportunity in a scheme run by the Welfare Solutions and Estate Pride Team’
Lucky recipients were asked to choose from three different ‘volunteer opportunities’
Option one was Resident Surveys: basically tramping about in all weathers asking people on ‘selected estates’ what they think of particular community issues-This happens in pairs, presumably so they can protect one another from all the different kinds of vitriol ‘the community’ might have about the lack of services via cuts and the inflated salaries of Lambeth council directors. But hey, Lambeth are convinced that by doing the work of their paid employees for nothing, you can gain great skills. The letter gushes that such skills include:
‘dealing with the public in a customer service role, capturing information and gain[ing] insight into community engagement’
If you don’t fancy that, there’s
Option two: Estate inspections: This is about delivering services (stop laughing) and involves being mentored by trained (presumably paid, but who knows anymore) Lambeth council staff. On this one, the new found skills include
‘reporting, writing repair requests’
and a possibly illuminating combination of
‘understanding how the housing sector works and problem solving’
Last but not least is doing a bit of gardening for Lambeths ‘less able residents’. In three months this clearing of weeds/gardening apparently provides a number of wonderments including:
‘gaining horticultural/maintenance, creative and project management experience’.
They leave out getting the odd cup of tea, maybe they just couldn’t agree on any specifically ridiculous wording for potential quasi-skill set, for example: to professional tea taster or to the development of professional tea buyer which would include exciting travel opportunities to pick the best leaves for brand name teas, gaining exceptional skills in quality control and financial exploitation for a multinational corporate body.
In addition to all this there’s the obligatory CV writing workshops, interview techniques etc. But also the completely stunning and baffling:
‘customer service functional Maths & English and IT skills training’
(and yes, I can see several errors and oddities in that line too, but never mind)
In return for this bewildering array of nonsense -your bedroom tax gets erased for 3 months:
‘You will receive financial support to assist with the effect of the social sector size criteria (bedroom tax) through monthly rent adjustments to cover your shortfall for the 3 month duration’
So if it’s possible to give monthly rent adjustments to cover shortfalls: why can’t they just do that for everyone?
Why do people need to work for 3 months on Lambeth’s bizarre version of local workfare? And of equal importance -are Lambeth in breach of the Equality Act? Even if a disabled person wanted to take part in this sham none of the options seem particularly accessible. Lambeth announced in 2014 that they would tackle the issue of bedroom tax with what they called a ‘work first’ approach.
The DWP’s own 2015 report said that three quarters of those effected by the bedroom tax were going without food and/or heat while just 1 in 9 of those affected had been able to move home to a smaller property. We know it’s much more difficult for disabled people to move home due to completed adaptations to their homes and local family and friends networks.
We also know that those in receipt of housing benefit are increasingly those in work on low pay and in insecure work, which is compounded by the increases in the cost of living. Another fact that seems to have escaped Lambeth:
‘A “work first” approach will be taken that will encourage these households to avoid the bedroom tax altogether by getting into work’2
Surely, the only correct thing to do is to scrap this punitive tax that persecutes those with the least- Lambeth council show they can do it for 3 months-or to work at local levels to alleviate the inhuman impacts of bedroom tax on local individuals, families and children?
No, Lambeth chose to devise ‘work first’ workfare schemes to add further persecution and provide them with labour at the equivalent of a x pounds a week , reducing their own employment costs, driving down wages, and denying real paid jobs in the process.
If anyone thinks that this is a useful initiative, think again: how long before this turns to 30 or 40 hours per week, how long before dwindling ‘services’ need to be exchanged for work in a ‘work first’ local agenda? What happens to those who can’t work because of chronic ill health, or impairment, and those that need additional support?
Would you be willing to take part in a focus group to discuss these experiences?
My name is Rosa Morris and I am doing research on:
changes over time in the way the government defines ‘disability’ for the purposes of employment-related disability benefits how this definition compares with disabled people’s lived experiences.
As part of the research I want to find out about:
disabled people’s experiences of the Work Capability Assessment how well they think the WCA reflects and understands their experience of impairment and disability.
I am a disabled person myself with experience of applying for Incapacity Benefit and Employment and Support Allowance. I hope this research will give a greater voice to disabled people and their experiences.
First focus group looking for disabled people to take part on Wednesday 27th January 2016, 2-4pm
Second focus group Wednesday 3rd February 2016, 2-4pm
I am particularly keen to include the experiences of people with mental health difficulties in the research, in order to explore:
people’s experiences of the Work Capability Assessment
how well they think the WCA reflects and understands their experiences.
Both meetings will be at at 336 Brixton Road, London SW9 7AA.
All travel and access expenses will be reimbursed – please contact me if you have any access requirements to be able to take part.
All participants’ details will be kept anonymous. You will be able to withdraw your consent at any time before or during the focus group and for up to 3 months after participation. All focus group participants will be asked to respect other participants’ confidentiality.
If you are interested in taking part and/or would like to speak to me, in confidence, to find out more information please email me at email@example.com
It’s often said that history only remembers the victors. Recently, the Equality and Human Rights Commission produced a video to, and I quote, “Celebrate twenty years since the passing of the Disability Discrimination Act in 1995.” For disabled people who were involved in the struggle to have the inequalities we face acknowledged and addressed, I doubt there are many of us who will be putting the flags out or popping champagne corks in celebration of the Act itself.
The bulk of us who were actively involved remain true to the belief that the passing of the Disability Discrimination Act (DDA) was a significant defeat for disabled people and the struggle against social oppression. This is not to say the passing of the DDA had no positive impact upon disabled people’s lives or had no influence on social change, it did, but acknowledging this shouldn’t detract us from recognising the fact the DDA restricted our progress, was of limited use to disabled people and was never likely to challenge the status quo.
It is impossible to produce a balance sheet of the DDA’s true impact because all kinds of external factors operate to mask the truth. It can be argued that the overall struggle for anti-discrimination legislation and specific actions such as the Campaign for Accessible Transport were more instrumental in bringing about organic social change. Over the last twenty years the whole of society has radically changed, and how disabled people have been both seen and treated have been part of that process whether that’s been via Tony Blair’s “rights and responsibilities” agenda or the neoliberal business case for ‘including disabled people’.
To fully appreciate our position on the DDA it is necessary to strip away the sugar coated presentation of this historic piece of legislation in order to reveal how the collective voice of disabled people and their many allies were silenced by acts of betrayal and brute force. The real story isn’t really about the twenty years since the passing of this piecemeal, ineffectual and oppressive Act, but rather it is about how the Civil Rights Bill and the ideas contained within it were buried both physically and politically by those who felt threatened by the potential impact it would’ve had on society.
The aim here is not to romanticise the campaign for full civil and human rights for disabled people, but instead to recall the major events that led up to the Tories introducing their own Disability Discrimination Bill in order to head off the Private Member’s Bill on Civil Rights Bill and why the passing of the DDA should be viewed as a significant and negative watershed in our emancipation struggle. Neither is it possible to critique the nature or merits of the Disabled People’s Movements campaign, although there’ll be signposts to various opinions on it.
Over the last twenty years we have seen various ‘interpretations’ of the struggle for our emancipation and many of these place tremendous emphasis on the fact that legislation was adopted to give disabled people ‘rights’. Here is a lengthy quotation from one such interpretation:
‘The Disabled People’s ‘Rights Now!’ campaign had a rich and diverse membership, including representation from many trade unions. It encompassed direct action, mass lobbies of parliament, petitions and awareness-raising campaigns to support civil rights for disabled people, and the issue was raised in Parliament on 14 separate occasions. The campaign won over a number of MPs and Peers, including Alf Morris, Roger Berry, Tom Clarke and Harry Barnes, who provided much needed political support and sponsored various Disabled People’s Civil Rights Private Members Bills.
The campaign reached a turning point in 1994 when the Conservative Government and the then Minister for Disabled People Nicholas Scott were found to have misled Parliament by stating that the cost of implementing civil rights legislation for disabled people would be greater than the sum previously calculated by civil servants.
In 1995, the Disability Discrimination Act (DDA) became law and although it was a watered-down version of what disabled people wanted, it was nevertheless a huge victory for the Rights Now! campaign.’ (Aspis, 2011:3)
There are many aspects of this account that needs to be placed in a wider context and, as a consequence, it can then be viewed differently. Let’s begin by looking at important historical moments as a backdrop to the Rights Now campaign. Barnes and Oliver remind us that:
…the move by disabled people to form their own organisations…
fostered a growing collective consciousness amongst disabled people…. [which] began a process of reformulating the problems of disability, shifting the focus away from the functional limitations of impaired individuals towards contemporary social organisation with its plethora of disabling barriers. It also set in train a political divergence between organisations for the disabled and organisations of disabled people. (Barnes and Oliver,1991: 4)
The political divergence spoken about here between organisations for the disabled (sic) and organisations of disabled people permeates right through the history of the struggle for anti-discrimination legislation and beyond. Significantly, Barnes and Oliver go on to say:
Many of the traditional organisations for the disabled had advised the government that discrimination was not a problem for disabled people and that legislation was unnecessary. Yet in 1979, the Silver Jubilee Access Committee drew attention to a number of ‘blatant acts of discrimination against disabled people. The official committee which investigated the allegations was unequivocal in its findings: discrimination against disabled people was widespread and legislation was essential. (Barnes and Oliver,1991: 5)
Ian Bynoe picks up the story when he writes:
….1992 marks the tenth anniversary of the publication of the Report of the Committee on Restrictions against Disabled People
(CORAD).This is the only report on disability and discrimination ever to have been received by a UK government. It found discrimination to be commonplace in the experience of disabled people and recommended anti-discrimination legislation. Its
proposals were dismissed by the government of the day and there has since been no evidence of a change of mind to revive hopes that the CORAD proposals might be implemented. (Bynoe, 1991: 1)
For the record the CORAD committee defined discrimination as: ‘the unjustifiable withholding whether intentional or not, of some service, facility or opportunity from a disabled person because of that person’s disability’ (Large, 1982:7)
The stark reality is that since the early 1980s there were no less than fourteen attempts to introduce anti-discrimination legislation via Private Members Bills largely introduced, but not exclusively, by backbench Labour MPs. Not only did each fail, they nearly all followed a similar pattern where in Parliament the Tory spokesperson would state that, ‘there was nothing but good will towards the disabled’, and of course, ‘education was better than legislation’ if any problems were to exist. On the other hand, the supporters of the various bills would mainly focus upon employment issues. Meanwhile outside of Parliament there was the ritualised farce of the big disability charities shipping in bus loads of disabled people to parade around Parliament Square before sending them home again.
Barnes and Oliver inform us that:
The formation of Voluntary Organisations for Anti-
Discrimination Legislation (VOADL) was a sign that many organisations for the disabled had been converted to views articulated by disabled people themselves. However, there
remain, perhaps inevitably, significant differences between the
philanthropic and liberationist elements of the disability lobby.
(Barnes and Oliver,1991: 5)
Those of us who were involved with VOADL and later, Rights Now, might take issue with the view that the “for” organisations were actually ‘converted’ to the views held by disabled people. Their practice then and since would cast a long shadow over this assumption. An alternative view is that for a long time disabled people’s organisations were only granted observer status within VOADL however the growing momentum behind the British Council for Disabled People’s campaign for anti-discrimination legislation (ADL), began to shift both the focus and the exercising of power and so this ‘conversion’ by the charities had more to do with their fear of being outflanked by BCODP than [it did to] any serious commitment to disability politics.
John Evans provides us with information on BCODP’s campaign when he says:
It was 1991 when BCODP (British Council of Disabled People) which is the national, representative and democratic organisation of disabled people in the UK launched its ADL campaign as its future main objective. (Evans, 1996: 2)
There are two important points raised here. Firstly, the fact BCODP made this their main campaign has been debated off and on within the Disabled People’s Movement ever since and it’s an issue that continues to divide opinion. This article isn’t the place to unpack the issues, however, the significance of the decision will be returned to later. Secondly, a major contribution to the launch of BCODP’s ADL campaign was the publishing of commissioned research undertaken by Colin Barnes into discrimination against disabled people in the UK. Evans points out that “Discrimination and Disabled People in Britain” was so comprehensive ‘…. it provided more than enough evidence supporting the whole case for ADL and it became a very useful tool in the campaign and a symbol for empowerment and inspiration. It was the first authoritative piece of research done in this area and was carried out by disabled researchers and disabled experts.’ (Evans, 1996: 2)
The momentum generated by BCODP’s campaign and the emergence of the Disability Action Network (DAN) made VOADL look staid and stuffy. As mentioned previously the differences between the philanthropic and liberationist elements of the disability lobby became increasingly marked. The Executive Committee of BCODP recommended that VOADL had a make-over and with a bloodless coup, Rights Now was launched under the stewardship of the Disabled People’s Movement. John Evans again broadly captures the period between 1992 and 1994 when he writes:
Direct action no doubt heightened the profile for the need for civil rights legislation in the eyes of the general public and did a lot to shake up the politicians complacency on the issue but it could never be enough by itself. Without the lobbying of parliament and meetings with politicians putting forward constructive arguments based on available evidence of discrimination and seeking their support the cause would have been lost. Any changes in the law have to be done through Parliament so you have to get some politicians fighting for your cause. At the same time disabled experts and lawyers have to work alongside other lawyers and politicians in writing up the Bill. This work was co-ordinated by a group called the Rights Now…. which was a coalition of about 50 disability organisations and charities who were formed to work together to help bring about ADL. (Evans, 1996: 3)
Two central features mark the difference between VOADL and Rights Now. Disabled people drove the agenda and increased the public profile of the ADL campaign, but at the same time worked directly with members of parliament to put together the Civil Rights Bill. Many of us believe that this displacement of the ‘big six’ disability charities resulted in them watering down their commitment to full and comprehensive legislation and a growing willingness to accept compromise as the price of regaining their power position over disabled people. This watershed moment sees the birth of what has subsequently become ‘Janus politics’ – where the charities look back towards the radical language and concepts from the Disabled People’s Movement, but actually creates ‘new meaning’ which transforms them into tools which then help maintain their status. For example, the concepts ‘independent living’ and ‘choices and rights’ now employed by organisations such as Scope and Disability Rights UK are a million miles from their original meaning.
Mike Oliver noted that:
Speaker after speaker from non-representative organisations for disabled people claimed the social model as their own in the Trafalgar Square demonstrations of 1994. Additionally, the Disability Rights Commission established in 1997 by the New Labour Government declares that it is guided in everything it does by the social model of disability. (Oliver, 2004: 28)
Caroline Gooding and Bob Findlay advised the opposition parties on behalf of Rights Now, including writing a briefing paper on the social model and the definition of disability. Once in power New Labour set up a Disability Task Force, but this body steadfastly declined to change the traditional definition of disability to one in keeping with the social model.
Stepping back a little, the first test for the new wave militancy and Parliamentary campaigning came when Harry Barnes tried to push through the Civil Rights (Disabled Persons) Bill.
Ian Parker, in an article called ‘SPITTING ON CHARITY’ which appeared in the Independent, wrote:
In May 1994, however, a private member’s bill, the Civil Rights (Disabled Persons) Bill, was killed messily by the Government, and the minister for disabled people, Nicholas Scott, eventually had to resign. (Parker, 2011: unpaged)
This caused an outcry and came about because as Parker acknowledged:
Last year – another Great Leap Forward – the civil rights argument was won. At some point, legislation may follow. (Parker, 2011: unpaged)
Parliament was finally ready to pass ADL, but the Tories and big business weren’t prepared to see the Civil Rights (Disabled Persons) Bill go through. As Lorraine Gradwell states, ‘… the Tory government were so concerned about the increasing popularity of anti discrimination legislation that they brought forward this fudge of a compromise’.(2015)
Their only course of action was to head off our Bill by introducing the weaker Disability Discrimination Bill led by William Hague. This was eventually passed into law twenty years ago as the Disability Discrimination Act.
What followed was a two horse handicapped chase. Roger Berry picked up the gauntlet and re-introduced the Civil Rights Bill, but Hague had the advantage of proposing a Bill supported by the Conservative John Major government. It was under these conditions that the ‘big six’ charities made their move.
Thanks to his position at the head of a fairly well-funded “for” organisation, and thanks to his support for incremental methods, and thanks to his recent claim to see some (flawed) virtue in the Government’s Disability Discrimination Bill, Massie is regarded with great hostility by many “fundamentalists”. Rachel Hurst, a radical with a sharp political sense, says, “Our voice has been shut out by the established charities. Some staff at Radar I’ve got more time for than I can say. [But] I wouldn’t mind shooting the man at the top. He is an Uncle Tom, Mr Massie… He actually doesn’t care a toss about the rights of disabled people.” (Parker, 2011: unpaged)
Evans also recalls in 1996 that:
The DDA took only 6 months from beginning to end in becoming law.
Unfortunately the DDA was flawed from the start as being a weak piece of legislation which was unenforceable and was considered a drop in the ocean, as it was certainly not going to protect disabled people from the many forms of discrimination which existed. It outraged the disability movement because it denied them the fully comprehensive civil rights legislation which they had worked so hard campaigning for and consequently they refused to have anything to do with it. (Evans, 1996: 4)
Perhaps even more forcibly Marian Corker wrote in ‘The UK Disability Discrimination Act – disabling language, justifying inequitable social participation’:
What has been ‘achieved’ is a legal instrument that has variously been described as ‘confusing, contorted and unsatisfactory’ (Gooding 1996); ‘a dissembling law not an enabling statute’ (Doyle 1997: 78); and ‘one of the most ill-conceived pieces of legislation ever to reach the statute books’ (Corker 1998: 115). This is the Disability Discrimination Act 1995 (DDA) (Corker, 2000)
She went on to say:
However, there is little doubt that the DDA represents a muddled combination of prohibition, justifiable discrimination and reasonable adjustment that can themselves act as a barrier to claimants who may be ‘isolated, possibly ill-informed and under-resourced’ (Gooding 1996: 6). Further, because the DDA legally justifies direct discrimination on the grounds of ‘disability’ in what Gooding (1996: 6) describes as ‘dangerously vague’ terms, and fails to incorporate a notion of the indirect discrimination experienced by disabled people, it seems an ineffective legal instrument for tackling the institutionalised oppression of disabled people. (Corker, 2000)
The DDA, unlike the Civil Rights Bill, wasn’t designed to tackle the institutionalised oppression of disabled people. Any hope of repealing and replacing the DDA with the Civil Rights Bill when New Labour came to power was quickly dashed. First, Labour’s Tom Clarke refuted BCODP’s claim that Labour in opposition had promised to do just that. Second, the Task Force already mentioned was hand-picked with more radical elements of the Disabled People’s Movement blacklisted throughout Labour’s terms in office. Margaret Hodge in 2000 when Minister for Disabled People, instructed the BBC to ‘edit out’ criticism of the DDA in its Disabled Century TV program. Third, Labour looked towards the new ‘Disability Movement’ driven by the charities and DPOs willing to buy into Blair’s ‘Third Way’ and the neoliberal market economy. Finally, it was New Labour who brought in Atos to hound sick and disabled people.
So, when we’re told the DDA was a victory, what does this mean? There has been a paradoxical development; just at the moment when inadequate legal rights were established for disabled people, the movement for emancipation was outflanked by the big disability charities and made an outcast by successive governments. Since 1995 the Disabled People’s Movement has gone into decline. Internal division and criticism followed the defeat of the Civil Rights Bill, with senior disabled activists accusing BCODP of ‘putting all its eggs in one basket’ by having ‘legislation’ as its prime focus and failing to cultivate grassroots structures and organisation.
Does this look like a victory? Merely getting legal recognition that disabled people have limited rights not to be discriminated against? Are they saying we should be celebrating being granted crumbs from their table? In 2005 the Public Interest Research Unit reported, ‘Ten years of the Disability Discrimination Act: Anniversary research indicates qualified failure.’
The DDA gave individual rights, but simply asked for employers and service providers to behave ‘reasonably’. The last five years in particular has witnessed savage attacks on both disabled people’s rights, services and lifestyles. A reverse of disabled people’s fortunes added to by the threat of legalised ‘assisted suicide’ is the reality, not this empty rhetoric of ‘equal citizenship’. Disabled people have been silenced and sidelined for the majority of the last twenty years apart from piecemeal changes in the social environment and attempts at tokenistic ‘inclusion’ here and there.
Now the whitewash begins. We see video clips from the Equality and Human Rights Commission and Scope on 20 years of the DDA, producing ‘false history’ via safe narratives and the worst of all, the Heritage Lottery Fund supporting Leonard Cheshire’s empire to write ‘disability history’ (sic). Ellis’s piece for the HLF on the DDA is another example of revisionism with a dash of criticism thrown in.
Those of us who lived and fought through the 1980s and 1990s see no cause to celebrate. Politically, we were defeated in 1995; our slogan, “Nothing About Us, Without Us”, has still to be realised. Although the last twenty years has been an uphill struggle to keep the fight for emancipation alive, we are seeing yet again a new wave of determination among disabled people; people who believe in freedom and social justice. These green shoots are what we should be celebrating today, not the results of the falsification of history written by our oppressors and shameful or misguided collaborators.
Aspis, S. (2011:3) Campaigns in Action – Disabled People’s struggle for Equality
Barnes, C. and Oliver, M. (1991) ‘DISCRIMINATION, DISABILITY AND WELFARE: FROM NEEDS TO RIGHTS’ in Bynoe, I. et al.,
Equal Rights for Disabled People: A Case for a new law – IPPR.
Bynoe, I. (1991) THE CASE FOR ANTI-DISCRIMINATION LEGISLATION in Bynoe, I. et al., Equal Rights for Disabled People: A Case for a new law – IPPR.
Oliver, M. (2004) ‘The Social Model in Action: if I had a hammer’, in Implementing the Social Model of Disability: Theory and Research edited by Colin Barnes and Geof Mercer (2004); Leeds: The Disability Press, pp. 18-31
Gradwell, L. (2015) Comment on her Facebook page, 4th November.
Corker, M. (2000) ‘The UK Disability Discrimination Act – disabling language, justifying inequitable social participation’, in: The 10tk Anniversary of the Americans with Disabilities Act, edited by Anita Silvers and Leslie Francis, Routledge
Below is a response to Tomlison’s piece in Able magazine published earlier this week
The Minister for the Disabled People says:
“We should do everything we can to give people the dignity of a job, the opportunity to achieve their career aspirations and the security of a pay cheque. The focus should always be on what a person can do, giving them every opportunity to fulfil their potential. No-one should be written off to a life on disability benefits and it should always pay to work.”
The ‘help’ I have received to get work has been pitiful. I was on Incapacity Benefit due to degenerative disc disease and osteoarthritis – there is no cure, I won’t get better. I am in constant pain and have mobility problems. However, I was found ‘Fit For Work’ and now receive Job Seekers’ Allowance. I am £30 per week less well off, I can no longer afford taxis when I need them, can no longer afford better quality food, can no longer afford to pay my heating bills so spent the early (cold) part of this year with the heating off. This new-found poverty has impacted directly on my physical and mental health.
I now have to attend the Work Programme five days per week to ‘Job Search’. I am constantly exhausted, constantly in pain. After eight months on the Work Programme I have had no practical help in finding employment, unskilled and ignorant ‘advisers’ have in fact hindered my efforts. Their suggestions on how to get back to work have been risible and amateur. They have ignored my qualifications and experience and attempted to force me into unpaid work in completely inappropriate fields. Being subject to a hostile sanctions regime has had an impact on my blood pressure and I now suffer from stress and insomnia. Despite many hours of searching for work in the areas I have been mandated to search by the Job Centre, I have had no replies to my letters and CV – in EIGHT MONTHS.
Clearly, your definitions of ‘dignity’ ‘opportunity’ and ‘security’ come from a different dictionary than mine. I cannot afford new clothing, new shoes and I cannot even afford to put credit on my phone. My household is sliding into debt fast. I am dreading the winter. On the Work Programme I am in the company of many, many others in exactly my situation. They, too, are still disabled and unemployed months or even years after being declared ‘Fit For Work’. The only dignity we have is in our shared experience and defiance of your government’s attacks on us.
Minister, in short, disabled people can well do without your ‘help’ in finding us work.
We have received lots of emails from the UK, Europe and internationally asking us about the UNCRPD inquiry what it really means and what DPAC actually did. We set out the main questions and answers below:
What is the UNCRPD?
UNCRPD stands for the United Nations Convention on the Rights of Persons with Disabilities. The Convention includes a set of Articles or points on the rights of disabled people. You can see the full text HERE
The Westminster Parliament signed up to respect those rights included in the convention, they also ratified the Optional Protocol 8th June 2009. The Optional Protocol is a very important route for people to challenge any violation of rights by governments or authorities against the UNCRPD
What does the UK ratifying the UNCRPD Optional Protocol mean?
It means that the UK (state party) accepted the competence of the UNCRPD committee to conduct inquiries into the violation of the articles of the UNCRPD. So while anyone in any country can challenge governments through the UNCRPD –an inquiry by the UNCRPD committee can only be conducted under the Optional Protocol and only if that country (or state party) has ratified it. DPAC used the Optional Protocol to initiate the current inquiry into the UK because we saw violations of the rights enshrined in the UNCRPD and that disabled peoples’ rights were going backwards (retrogression of rights)
How was the inquiry initiated?
DPAC initiated the UNCRPD Inquiry using Article 6 of the Optional Protocol meaning that a formal process was carried out by DPAC to submit complaints and submissions. This process meant that documents needed to be written in a particular way with attention to specific Articles within the UNCRPD and that strong evidence needed to be framed accordingly. The use of the UNCRPD Optional Protocol is always a formal process with strict guidelines. It’s not something that people can do by accident or by sending through lists of media articles.
Is the UK inquiry really the first of its kind ever?
Yes, it is the first of its kind against a state party through Article 6 of the Optional Protocol, although inquiries have been conducted for individual complaints previously in other countries this is the first to be against a state party for grave and systematic violations. Also it’s useful to note that individual complaints to the UNCRPD must have first exhausted all domestic channels. That is they need to have exhausted the countries court mechanisms before making a complaint to the UNCRPD.
When did DPAC start doing this?
DPAC first contacted the UNCRPD in 2012. DPAC made it first submission to the UNCRPD committee in 2013 to attempt to initiate the process of inquiry, since then we have been providing further reports and submissions. We had to prove to the committee that there were grave (severe) and systematic (continuous and built into system of welfare ‘reform’ policies) violations (breaking) of rights enshrined in the UNCRPD. We also had to provide strong evidence of retrogression for the inquiry process to happen.
Does the government know about the inquiry?
Yes, they were given official notice of the inquiry in January 2014. They had also made their own submissions to the inquiry process attacking evidence that DPAC had put forward from 2013. However, the UNCRPD committee accepted DPAC’s evidence which is why the inquiry is happening. The devolved governments of Scotland, Northern Ireland and Wales are also aware. However the most punitive policies come from Westminster and the Westminster government. The UK as a whole is treated as a state party under the UNCRPD
Who wrote the submissions and produced the evidence for the inquiry?
Three of us wrote the submissions: Debbie Jolly, Linda Burnip and Anita Bellows. We are grateful for the additional input and guidance of Nick Dilworth, Louise Whitfield, Dr David Webster and a person who wishes to remain anonymous who provided excellent admin and other support throughout.
Why didn’t DPAC tell people about the UNCRPD inquiry sooner?
We were told we must keep everything confidential or the inquiry would be halted. We didn’t want that to happen because we knew the inquiry was needed. It was only after the Scottish Herald produced the full details that we decided we needed to step in to stop some of the misconceptions and misunderstandings that were starting around the inquiry.
Early Press stories said that it was the Just Fair report that started the inquiry…
DPAC had also submitted evidence to the 2014 Just Fair report. But this report dealt with a different convention which was the International Covenant on Economic, Social and Cultural Rights (ICESCR) People that submit reports under other conventions do not automatically somehow initiate an inquiry-it was quoted in early press pieces that the Just Fair report had somehow kick started an Inquiry by the UNCRPD. But this kind of thing just does not happen if you write a report on one convention ( there are several), it doesn’t suddenly set off a process on another Convention such as the CRPD or any other, despite its wealth of evidence or importance-formal processes need to be followed to initiate an inquiry, as we said earlier.
The Daily Mail has been attacking the inquiry process and says the UNCRPD people are meddling…
What else can we expect from the Mail? As we said the government have been aware of this process since 2013 so the inquiry is no surprise to them. The UK signed up to the UNCRPD and is therefore bound by its contents. There are processes and procedures that the UNCRPD committee must follow and that the government must follow which result in official procedural cooperation between the two. We also saw with the 2013 visit from Raquel Rolink (on the ‘bedroom tax’) that the Mail quoted MPs who said she had come uninvited to ‘interfere’ along with some more colourful accusations against her- again because of international procedures and protocols no person from any UN committee can come to the UK without government knowledge or acceptance first-again the Mail lied and inflamed the proper process of accountability.
Lots of people have written, blogged and raised the issues facing disabled people don’t they deserve credit?
Of course, lots of people have been fighting in lots of different ways and everyone deserves credit for raising the issues consistently-it’s something we must all keep doing
What does DPAC think will be gained through the inquiry?
Because it’s the first of its kind we can’t say –unfortunately we don’t think that things will suddenly return to the way they were in 2009. We don’t want people to think that the inquiry will solve everything because that would be creating false hope. We need to be realistic but also positive-what is happening is that the Conservatives are finally being held to account for their actions
We also hope that the publication and knowledge of the inquiry will aid other countries affected by austerity/ low levels of support to disabled people and the widespread disproportionate impacts on disabled people’s human rights.
We hope it will be of use in bringing other Governments (State Parties) to account through the use of the UNCRPD Optional Protocol. We would like it to provide hope and assistance to active grassroots organisations, where traditional disability organisations and big disability charities fail to act for fear of Government reprisals and/or funding cuts.
DPAC refuses any funds that limit our independence and we always will-we will also fight this and any other government where they destroy disabled peoples’ rights through punitive cuts, policies or actions
Dangerous, Murderous and Wrong: his links with Extremist Far Right Groups
Duncan Smith claimed he didn’t know the difference between right wing and left wing when evidence proved he was working with some far right wing groups and individuals. He knew perfectly well, of course.So if we think of Jeremy Corbyn as left wing, or the recent media accusation of ‘hard left’ -a man for social justice, redistribution, equality, human rights, and anti-austerity-we get the idea that the opposite of this: social injustice, greater wealth for the elite, inequality, removal of human rights, and punitive austerity would be right wing or ‘hard right’ even-but extremist far right is different again.
We can be forgiven for any confusion caused by the supposed left wing Labour Party’s apparent right wing purge on left wing Corbyn voters in the Labour leadership election. This is apparently named ‘operation ice-pick’-because an ice pick was used to murder left wing Trotsky in Mexico by left wing Stalinists (there are also different unhelpful shades and fractions of this left and right wing thing).
If we add misinformation and misdirection by media and politicians we can also be forgiven for moving on to something else like thinking the multinationals and global bankers do inhuman things and own nation states along with IMF and the World Bank anyway.
And speaking of those who do inhuman things let’s get back to IDS and his activities. We’ve seen them in the past few days as it has risen to start preaching its vile lies once more. These issues are well documented on the DPAC website and elsewhere.
We now need to add DWP policies that instruct DWP call centre workers to hold up a coloured card if they’re on the phone with someone who they suspect might be suicidal because of murderous DWP policies, removal of one third of Employment and Support Allowance from those in the Work Related Activity group from April 2017, increase in ESA sanctions by 30%, continuous harassment of those on ESA by Job Centres, deaths of x number of innocent people due to DWP policies, unexplained hysterical laughter and reactions in debates on the punitive bedroom tax and increases in homelessness, growth of foodbanks and increases in starvation levels, and most recently the bizarre behaviour in Osbourne’s emergency budget-the list goes on and on.
We thought it was time to reproduce another list-an evidence list of IDS’ far right extremist affiliations –this does go back to a time when he clearly had less control of the media, but given his murderous actions over the past years who can doubt that he has done anything but got worse?
In 1995, Duncan Smith was one of a few Tory MPs who met with senior figures of the racist and anti-semitic French National Front in Westminster. Le Pen’s deputy, Bruno Gollnisch MEP, later said Duncan Smith and other Tory MPs they met were “sympathetic” to their views:
“I came to meet members of the Conservative Party sympathetic to our views… I met Duncan Smith and others in their offices and later we got together for less formal talks in a bar somewhere in the Parliament building.“
The vice-president of Duncan Smith’s leadership campaign team in Wales was Edgar Griffin – the father of then BNP leader Nick Griffin. Edgar later said the reason he was not a member of the BNP was because it was “too moderate” for him – unlike the Tory Party. And unlike Duncan Smith too presumably.
A Tory Party far-right wing fringe organisation called the Swinton Circle also supported Duncan Smith in his successful bid to lead the Tory Party. The Swinton Circle is led by former National Front activist Alan Harvey and has close ties to pro-apartheid far-right South African groups such as the Springbok Club.
Iain Duncan Smith campaign aide Edgar Griffin lifted the phone – and damned himself in five brief words.
“British National Party,” he told The Mirror. “Good afternoon.”
It was confirmation that the man listed as a vice president in hardliner Mr Duncan Smith’s campaign for the Tory leadership was an activist for the extreme group.
Even worse, he is father of BNP leader and convicted racist Nick Griffin. His wife, Jean, is a BNP secretary and stood for the group in the general election.
In his talk with The Mirror Mr Griffin agreed that Mr Duncan Smith was an “extreme right winger” and claimed Tories were ready to join the BNP “in droves” if rival Ken Clarke won the leadership contest.
Since the publication of the Sayce Report (2011), employment support for Deaf and Disabled people and in particular, Access to Work, has been under attack. The last coalition government and the current Tory government, seem determined to change Access to Work from being one of this countries “best kept secret”, to a scheme that no longer meets need, is discriminatory to those with high support needs and causes misery to Deaf and disabled people’s lives. Our lives. Rather than support us into work, the scheme has become a barrier and has resulted in both job losses and demotion.
Iain Duncan Smith recently announced that he wants to “get disabled people back into work”, yet the support that we need is being cut.
Join us on Saturday the 26th September and march for Access to Work. We will be meeting at Old Palace Yard at 12pm and marching to Number 10 Downing Street, where we will deliver our petition. Please help us by signing and sharing this as widely as possible.
DWP has at last published the mortality statistics for the ESA group. It will take time to analyse them, but what they show is that the WCA is not fit for purpose. 2500 people have died after being found fit for work. Another 7,200 people died after being placed in the WRAG, the group for disabled people who can do ‘some work’, another 7540 died waiting to be assessed
But these figures do not tell the whole story. They ignore the suffering of disabled people who survived, being found fit for work but unable to claim JSA because they cannot meet the conditionality of the benefit. The suffering of 3000 disabled people sanctioned every month, and who cannot compensate for their loss of income, because they were found unfit to work, and they are.
The suffering and the humiliation of disabled people who have to prove their impairment/long term health issues over and over again to DWP staff who don’t believe them. The suffering of disabled people being portrayed as scroungers by the media. This suffering cannot be captured by statistics.
Under the last Labour government, the aim was to force 1 million disabled people out of benefits and into work. Almost 10 years later, the aim is the same, while in a meantime a Coalition minister recognised that people on disability benefits were ‘sicker’ than they thought.
This has not changed. Some people will never get better and need long term support. To pretend that they can do ‘some work’ is disingenuous, as no employer is prepared to offer ‘some work’ to disabled people.
People died because of the welfare reforms, but others suffered and still suffer. Let’s not forget any of them
Incapacity Benefit for new claimants will go, replaced by Employment and Support Allowance with the emphasis on what a person with a physical or mental health condition can do, rather than what they can’t.
Peter Hain, Labour Secretary of State for Work and Pensions, 2007
We need a system focussed on what a claimant can do and the support they’ll need – and not just on what they can’t do.
Iain Duncan Smith, Conservative Secretary of State for Work and Pensions, 2015
It’s just the same old shit, over and over again, whichever bunch of bastards is in charge. The above two comments were made almost a decade apart and in that period the number of people claiming out of work sickness benefits has barely changed. And why would it? In any society there will be some people who cannot work due to illness or disability and as the pension age gets ever higher then that number as a percentage of the workforce will grow.
There is nothing unusual or unexpected about this. Whoever you are reading this, one day you will get sick and then you will die. If you are lucky this will not happen until you have reached retirement. If not then you will be helped on your way to an early grave by politicians desperate to cover up for their failure to provide enough jobs by blaming unemployed, sick and disabled people for unemployment.
Iain Duncan Smith’s speech yesterday was a masterclass in this deception, but everything he said has been said before. So out of ideas is the Secretary of State that he is now misrepresenting the entire process for claiming sickness benefits – pretending it is a binary system which “decides that you are either capable of work or you are not”. This is simply an outright lie and he knows it. Currently claimants are assessed as being fit for work, unable to work, or placed in the Work Related Activity Group which means capable of some work, or of being able to work in the future. In the recent budget George Osborne declared that this group is to be scrapped, creating precisely the binary system that Iain Duncan Smith says he opposes. Perhaps he hopes we won’t notice. Perhaps even he hasn’t noticed.
The UK does not spend significantly more on out of work sickness and disability benefits than other comparable economies. According to the OECD we spend a fraction more than Poland as a percentage of GDP on ‘incapacity’ – and less than Australia, New Zealand, Spain, Israel, Belgium. Luxembourg, Iceland, Finland, Sweden, Denmark, Norway, Switzerland and the Netherlands. It is true as Iain Duncan Smith said yesterday that the UK spends more than France, Germany and Japan. In humane society this would be a source of pride. Or at least it would be until you found out that Germany spends over three times as much on unemployment benefits whilst France and Japan – where the retirement age is lower – both spend almost double what the UK spends on pensions. And the incapacity spending figures by the way come from 2011, before most of Iain Duncan Smith’s benefit cuts had been implemented.
Only an astonishing degree of self-delusion could explain Iain Duncan Smith’s latest belief that more workfare, more assessments, and more benefit cuts will magically cure those unable to work because of illness. But then he is deluded. That’s why he could claim yesterday that “The Work Programme is … the most successful back to work programme we’ve ever seen.” That’s the Work Programme that has seen less sick and disabled people enter employment than it was estimated would have done if the scheme hadn’t existed. Hundreds of millions of pounds spent on making things worse. This is what Iain Duncan Smith calls a success.
Rarely, if ever, has such a fucking idiot been given so much power over so many people’s futures. If the human cost were not so great then the best response would be to point and laugh. But we can’t do that, not as millions of lives are destroyed. If society means anything at all it means looking after each other and that means driving Iain Duncan Smith back into the sewer he crawled from before he can do anymore damage. No-one should stand idly by now. We need to be relentless as he is, to wake up every day with one thought on our minds – to destroy Iain Duncan Smith’s welfare reforms before they destroy us.
The Reclaiming Our Futures Alliance is calling on Deaf and Disabled People’s Organisations (DDPOs) and individual Disabled Rights campaigners and supporters to join Not Dead Yet UK in speaking out about the dangers that the legalisation of assisted suicide poses to Disabled people.
There are currently two bills to legalise assisted suicide before Parliament. Lord Falconer’s Assisted Dying bill had its First Reading in the House of Lords on 4 June and Rob Marris’ Assisted Dying No.2 Bill had its first reading in the House of Commons on 24 June. Marris’ bill will have its Second Reading debate in the House of Commons on 11 September when Parliament returns from its Summer recess. For the first time in years MPs will get to vote on this highly controversial subject.
We have all been disappointed over the last few days by the case of the disappearing DWP ESA Sanctions leaflet-first it was there, then it was gone. The DWP link tells us that the leaflet is coming soon, but what happened to the original?
A few of us had seen the leaflet before it was removed and noted that the DWP were using photos and examples, apparently in an effort to appear humane ( stop laughing).
One of the examples: Sarah’s story, happily tells of her being sanctioned for two weeks because she didn’t see the value of completing her CV as ordered by the DWP Job Centre goons. Sarah is almost in raptures as she recounts how she’s learned her lesson and recognises the error of her wilful ways-she’s grateful for losing 2 weeks of her ESA and for being sanctioned- the moral is: its good to be punished and put on the right path by potential starvation when you’ve already been told you’re not fit for work after a dehumanising assessment by Maximus . See excerpt from original leaflet below
But there was a problem which the DWP seems to have recognised- no, not that ESA is about being unfit for work-but that smiling Sarah with her remarkable tale of the kindly people at the job centre probably doesn’t exist other than as a stock photo. Here she is again, this time as a cover girl for the despised Universal Credit ‘standing out from the crowd’ at http://dailyjobseeker.tumblr.com/post/101666827899/standing-out-from-the-crowd
Disability campaigners, who said councillors refused to look them in the eye, claimed a small victory when the council opted to investigate if reserves could be used to delay some of the changes
The changes will include:
Raising the threshold for who can receive care, meaning only people who have “substantial needs” will be eligible
Increasing the financial contribution made towards care and support, including users with more than £50,000 capital paying 100%
Introducing a £5 daily fee for transport to day care and other activities
Councillor Clare Neill, cabinet member for adult social care, said: “For adult social care, my share of [the cuts] is £65m over three to four years.
“This year, I’ve got to cut £11m from my budget – clearly I can only spend the money I’ve got.”
But campaigners said it disproportionately affected people with disabilities and that the consultation was flawed, which they said potentially gave them grounds for a judicial review.
Gary Matthews, Derbyshire representative of Disabled People Against Cuts, said: “The council’s own report says people will be unsafe at home, there will be more accidents at home because of a lack of care and people’s health will deteriorate.
“This will put an extra stress on the NHS. Some people believe the council is complicit in murder.”
He added that the introduction of charges will force many disabled people in to poverty.
Campaigners have 12 weeks to apply for a judicial review.
( BBC 18th June 2015)
See also http://www.bbc.co.uk/news/uk-england-derbyshire-30906966
My name is Gregory White and I’m a doctoral researcher in the Department of Social Policy and Social Work at the University of York. I’m looking for participants to be involved in my research project on protest groups.
As part of the project, I’d like to invite you to a one-to-one interview. The interview itself should last no longer than an hour. I am very flexible as to how the interview is conducted, although it is preferred that we meet in person. The interviews for this project are to take place over the next few months. I’m ideally looking to speak to people who have taken an active role in organising with DPAC either at a national or local level.
If you are interested in being involved in the research then I’d be happy to discuss this further. I can be contacted personally via e-mail: firstname.lastname@example.org
Well attended by a diverse section of the community as well as the local council leaders , MPs, trade unions, CAMPAIGN groups such as DPAC, Palestine solidarity, asylum seekers, GLBT committee and multi faith leaders.
The event was organised by UAF and One Sheffield many cultures- over 250 people attended.
It was a wonderful, emotional day and very humbling.
Here are some pictures.
And here is a great speech by Jen from Sheffield DPAC as a Quicktime movie at link https://www.dropbox.com/s/i46whiuky9jc360/jen.speech2%20%283%29.mp4?dl=0
In 2012, thanks to an award from The Winston Churchill Travelling Fellowship, disabled actor and activist Liz Carr travelled to the then five countries where assisted suicide and/or euthanasia are legal ie Belgium, The Netherlands, Switzerland, Luxembourg and in the USA, Oregon and Washington State. (Assisted suicide is now also legal in the US state of Vermont and in Canada).
Liz is opposed to the legalisation of assisted suicide and wanted to discover for herself how these laws work in practice and how, if at all, their existence changes the culture of a country. She shares her discoveries in a two-part BBC World Service radio documentary entitled, “When Assisted Death is Legal” and which is available to listen to here: http://www.bbc.co.uk/programmes/p014dkq5
In under an hour of listening time, these programmes provide important new information and perspectives on this most difficult of topics. For example:
* In Luxembourg, Jean Huss and Lydie Err, who co-sponsored the Assisted Suicide and Euthanasia Bill 2012, admitted they were disappointed in the law because they said it failed to include children and those with dementia. When I asked why these groups were not included in their law, they said that they knew it was easier to pass the law initially for terminally ill people only and then, once passed, to increase the law’s application.
* In Oregon, where the law is the blueprint for the Assisted Dying Bill currently before you in the House of Lords, the 2013 statistics reveal that pain is infact not one of the main concerns of people requesting assisted suicide. Instead, the three main reasons are loss of autonomy (93%), decreasing ability to participate in activities that make life enjoyable (88.7%) and loss of dignity (73.2%). By comparison, inadequate pain control or concern about it was one of the least important concerns at 28.2%.
* Since this documentary was produced, Washington State’s 2013 annual report has shown that 61% of all those who were supplied lethal drugs in order to commit suicide listed the feeling of being a burden on family, friends or caregivers as one of their main reasons for their request.
* In Switzerland, assisted suicide has been legal since the late 1800’s and one of its most stringent safeguards is that each case is investigated by the police
* The Netherlands are currently debating something called ‘Completed Life’ which would legalise assisted suicide for those 70+ who are tired of life
* In the first 10 years since the Belgium Euthanasia law was enacted, there has not been one case of abuse reported. Is this because there have been no abuses (the BMJ reported in 2010 that only half of all euthanasia cases are properly reported) or because, as in most other countries, reporting and monitoring are self-regulatory?
Liz’s personal conclusion is that the risks to the safety and wellbeing of the majority should continue to outweigh the individual needs of those who want an assisted suicide. She hopes you agree and will vote ‘no’ to the Assisted Dying Bill.
Wolverhampton South MP Rob Marris’s Assisted Dying Bill is going to be debated and voted upon in what’s known as it’s Second Reading in the House of Commons on September 11th. This is the first time in 18 years that MPs will have had the chance to vote on an assisted suicide (AS) law.
We need to talk to our MPs about our fears and concerns about such a bill, to find whether they’re for or against it and if the latter, we desperately need them to attend on 11th September to vote against this bill.
This information sheet is the legal one. It details the current legal situation and looks at the details of these assisted dying bills.
The current situation
Those of us who oppose a change in the law, believe the current situation is adequate. Under the 1961 Suicide Act, killing yourself is not illegal but encouraging or assisting another person’s suicide is and can lead to up to 14 years imprisonment. The current law acts a deterrent to malicious or manipulative assistance with suicide.
But the Director of Public Prosecutions (DPP) also has a discretion not to prosecute if, for example, it is clear that assistance has been given reluctantly / after serious soul-searching or for ‘wholly compassionate’ reasons to ill or disabled people. It is this discretion that has allowed the high profile assisted suicide cases to avoid prosecution.
There are a list of factors considered when deciding if the law has been broken but in reality, if a person has made it clear that they want to end their life by an assisted suicide for health / impairment reasons and a friend or family member aids them (as opposed to a medical professional) then whilst they may be investigated, it is unlikely that they will be prosecuted. Infact less than 20 cases a year throughout the whole of England and Wales cross the desk of the DPP and few of them call for prosecution. And yet apparently this law isn’t working?
But laws send out messages – when something is legalised, it acquires the stamp of social approval. An assisted suicide law says, in effect, that if you are terminally ill, ending your life is an option that it is appropriate to consider.
And by putting assisted suicide into the hands of the medical profession, it’s feared it could become a treatment option.
Critics of the current law say that it’s unfair for families and friends to have to help an ill or disabled person to end their lives and not know in advance whether or not they’ll be investigated and charged. We say the illegatlity of the assisted suicide acts as a deterrent and ensures it is not the easy option.
Supporters say that because it’s not currently legal for a Dr to assist, that people have to kill themselves with amateur means which may fail. We say that everyone has the means to commit suicide and why should ill / disabled people be given a 100% successful method when over 90% of suicides for everyone else actually fail?
They say that dying people may have no choice but to take themselves off to somewhere like Dignitas before they’re ready to die but while the person is still well enough to travel – and that travelling to Dignitas is costly and difficult for those involved. We say that rather bringing assisted suicide to the masses and make it an easy option, that there should be improvements to end of life care for all people to ensure everyone can have a peaceful and pain free end to their life.
Supporters say they want the right to die. We believe the right to die already exists for each and every one of us. What those wanting a change in the law are actually asking for is the right for someone else to kill them.
Instead of a discretionary power where very few assisted suicides are ever prosecuted, supporters of a change in the law want to lay down in advance, the situations when it is okay for a Dr to assist a person to end their life. We say the law as it is enables the choice of a few whilst protecting the many.
What’s in the Assisted Dying Bill?
At the time of writing the text of the Marris bill is unknown but it’s likely that it will be very similar to the Lord Falconer Assisted Dying Bill that Not Dead Yet UK protested against in the previous Parliament. (Lord Falconer has also re-introduced his Assisted Dying Bill into the House of Lords so even if we defeat the Marris Bill in the Commons, we will still have to contend with Falconer at some point in the future!). Firstly they’re calling it an assisted dying and not an assisted suicide bill. They say it’s because it’s only for those who are actually dying but we say it’s to make the term more palatable, after all, the current campaigning group Dignity in Dying used to be called the Voluntary Euthanasia Society.
If passed, the ‘assisted dying bill’ would license doctors to supply lethal drugs to:
terminally ill patients with less than 6 months to live and who have,
a settled intent to end his or her life
the capacity to make such a decision and
are making the request voluntarily, on an informed basis and without pressure or duress
Two doctors are required to certify that these criteria have been met and their decision is to be referred to a judge of the High Court for confirmation. There is no requirement for a psychological assessment to assess capacity. The doctors do not have to be your regular doctors. If approved, the person would be supplied with the lethal drugs to enable them to commit suicide.
A medical professional (but not necessarily a doctor) would remain with the person until they died but they cannot help them to take the drugs – to do so would cross the line between assisted suicide and euthanasia.
Many people who support this bill believe it is to assist those who cannot kill themselves to have the same opportunity as everyone else but in fact, if someone cannot physically ingest or do the final act themselves would not technically come under this bill.
The proposed law – unsafe to change
Critics of the bill are meant to be reassured by ‘safeguards’ to protect ‘the vulnerable’ from abuse – and ultimately murder. So what safeguards exist to protect someone from being killed without their fully informed consent?
The proposals list a number of qualifying criteria for assisted suicide – such as settled intent, capacity to make the decision and freedom from pressure – but they do not translate these criteria into concrete safeguards. Instead, they
propose that these issues should be dealt with by the Secretary of State in codes of practice AFTER Parliament has agreed to change the law. SO MPs don’t even know the full extent of what they’d be voting for on September 11th. In effect, the issue of safeguarding has been side-stepped and Parliament is being asked to sign a blank cheque.
After concern about lack of safeguards was raised when the House of Lords debated the Assisted Dying Bill, Lord Falconer added a proposal that when a doctor assessing a request for assisted suicide considers that it meets the designated criteria, the decision should then be referred to a judge of the High Court for confirmation. The bill does not, however, require the Court to undertake any investigations of its own and as such, the role envisaged for the Court is little more than that of a rubber stamp. It is expected this will also be included in the Marris Bill.
Many aspects of a request for assistance with suicide go beyond a doctor’s professional competence. It may be fair to ask a doctor to confirm that a patient is terminally ill, to offer a prognosis and to advise on possible treatments. But most doctors are in no position to judge whether a request for assistance with suicide derives from a settled wish or whether there are any pressures operating in the background that could be influencing the request. In today’s world of busy multi-partner GP practices and declining home visits doctors often know little of their patients beyond what they pick up in the consulting room and they do not have the time or resources to set about investigating such matters.
The Oregon Experience
The Oregon Death with Dignity Act has been the blue print for the Falconer Bill and will be no doubt for the Marris Bill too. Here are some of the problems with the Oregon law:
Individuals seeking assisted suicide can resort to doctor shopping- visiting doctor after doctor until one agrees to write the lethal prescription.
Patients are often misdiagnosed as terminally ill with less than 6months to live when in fact they live for months and even years beyond what was originally expected.
Individuals with a new illness or disability are often faced with depression, which requires more than Oregon’s 15 day waiting period to be treated.
Many patients experience outside pressure to commit assisted suicide, which often goes unnoticed and unpunished.
Individuals are often portrayed as a burden on their families and are made to feel that their life is not as valuable.
In 2007, none of the individuals that requested assisted suicide in Oregon were referred for a mental health evaluation.
Under Oregon law, depressed or mentally ill individuals can still be considered “competent” to request assisted suicide.
Under Oregon law, doctors that fail to report or file incomplete or inaccurate reports face no penalties.
All records are sealed and all underlying data is destroyed after the annual report is published.
The 2013 Oregon statistics reveal that the three main reasons given for requesting an assisted suicide are loss of autonomy (93%), decreasing ability to participate in activities that make life enjoyable (88.7%) and loss of dignity (73.2%). By comparison, inadequate pain control or concern about it was one of the least important concerns at 28.2%.
Assisted suicide is also legal in Washington State. The 2013 annual report has shown that 61% of all those who were supplied lethal drugs in order to commit suicide listed the feeling of being a burden on family, friends or caregivers as one of their main reasons for their request.
64 year old Barbara Wagner was diagnosed with metastatic lung cancer. Her oncologist prescribed chemotherapy to slow cancer growth, reduce symptoms, and extend her life. The Oregon Health Plan however would not cover the costs for her chemotherapy prescription, but sent her a letter saying they would instead pay for assisted suicide drugs.
Today is a very, very sad and tragic day and I think some of us are starting to cry up the front here, because this has been a long campaign and it has been so important to so many people because it means so much, but this isn’t the end and I think what last Wednesday showed is that disabled people are strong when we unite with our allies, we fight back and we give them hell.
Save the ILF!
Whoa boy, Whoa.
I come in peace with my horse to save the ILF. We are fighting for independent living for disabled people in the UK in 2015. Can you believe that?
We have had enough. The Independent Living Fund closes tomorrow and we are not going away. We are going to fight on.
The ILF has given me freedom. It has given me indpendence, to live my life the way I choose without being reliant on friends or family. Without being stuck to a regimented regime of getting up in the morning when it suits other people, to go to bed at 9 o’clock, I was 22 and I had to go to bed at nine o’clock, can you imagine. I was told when I could go to the toilet, once a day at one o’clock, if I wasn’t there on time then tough, I’d have to wait until a later call that evening. It’s just not just me, it’s thousands of people out there who are subjected to this.
This is from Leanne. Hi all, I wish I could be with you all today but unfortunately, I can’t but please know that I am with you all in spirit, this is not the end, it is just the beginning.
There used to be a time when governments, particularly when the ILF came in when they were able to at least talk about independent living with a straight face and now when they do it’s very much with a forked tongue. When the ILF closes today, it is more than just the closure of a fund. I think it signifies very much the end of an idea and that idea was that society was very much prepared to meet its responsibilities to make sure that equality of opportunity was something more than words. And we took tangible steps like the Independent Living Fund which got people real lives beyond looking out the window and watching the world pass them by.
It is often said that the Queen is special because she has two birthdays. But in fact, there are another 18,000 people who have two birthdays: the day they were born, and the day they received their first ILF payment.
My first ILF birthday was in 1988, when the Independent Living Fund was introduced. For people with high support needs, it was a great birthday, changing our lives overnight: we became part of our communities, went to college, got jobs, made friends, and generally did the things that non-disabled people take for granted. I met Mike and Darren who have become not only my personal assistants but also life-long friends.
ILF was a springboard for a new life, whereas Direct Payments are a safety net. Direct payments help you out of bed in the morning. ILF gave you a reason to do so. My fear is that we are going back to the days without hope or purpose.
In 1964, I became disabled. Not by being involved in an accident or being ill. I became disabled with one simple sentence from a consultant: “Mr and Mrs Punton, I am sorry to have to tell you but your child has got cerebral palsy.” From that moment, society believed that I had no purpose or future and prescribed special school followed by a life sentence in an institution. My parents disagreed, and I remember my Dad saying, “well, it is not rocket science that you shouldn’t let other people govern what you do.” And my Dad should know, because he was a rocket scientist!
But even so, I was still forced to live the life that society prescribed.
Then, in 1988, three things happened. Thirdly, I got my first job. Secondly, I moved into my first flat. Firstly, and probably most importantly, I applied and was accepted for ILF.
Without the first, I am sure the other two would not have been achievable. The ILF changed my life. It gave me access to the wider community of Birmingham and beyond. It allowed me to meet fellow like-minded people who taught me how to see myself in a different light and introduced me to the concept of social justice. It allowed me to work, start my own community interest company, and empower other people. I even stood as a candidate for parliament at the last election. Fortunately, the wisdom of the people prevailed! But because of ILF and the British democratic process, it is possible for me to sit here and speak to you. The question is, will Robert Punton the younger be able to do the same?
ILF has changed our lives, and how we see life. I am desperately sad that the decision of 2010 meant that an opportunity open to all was suddenly closed, which has led to it being labelled elitist. That was not the original intent or purpose.
On the 19th June 2015, we received our final instalments of ILF. My concern, and the concern of thousands like me, is that come the first of August, the restrictions of the new definition of community care, will not allow me to continue to participate in my community and I will find myself returning to the lifestyle of pre-1988. If you will allow me a bit of poetic licence, I do not wish to return to the shadows of society but want to help light my community.
I would like to finish with a quote from Antoine De Saint-Exupery “The notion of looking on at life has always been hateful to me. What am I if I am not a participant? In order to be, I must participate.”
Please allow me and many like me the opportunity to participate.
Reposted from www.frameworkinclusion.uk with thanks
Today (30th June 2015) the Independent Living Fund is officially closed at midnight by a heartless Conservative Government –the working concept of independent living is effectively silenced. A fine campaign was, and will continue to be fought by ILF users and Disabled People against Cuts. On the 24th June ILF users and DPAC stormed the parliament in scenes previously unwitnessed in the British Parliament, but the fight began a long time before that day. The fight for independent living for disabled people has been ongoing for decades; the fight to #saveilf began in 2010 when DPAC asked those affected by the closure to new users to come forward for a court case against the Government.
Disabled people have always had to fight for their human rights and equality. People marvel at the number of demos and direct actions that have been carried out, but its what disabled people have always needed to do. The ILF campaign has been a huge success in alerting the public, the press and TV nationally and internationally to the intense cruelty of a Government who declare they will support those in greatest need and simultaneously close the very efficient ILF which was doing just that. The closure makes no economic sense ILF had running costs of 2% while cash starved local authorities have an average of 16% running costs. On the same day as the closure a #disability confident event was being run in Swansea –this is beyond ironic and highlights the theatre of duplicity that this Government engage in. While ILF users face cuts in support, sometimes of up to 70% or face the fear of being institutionalised, while they face the loss of jobs, staff, PAs, education and life-our Government preaches #disabilityconfident .
We want to pay homage to all those that protested on the streets and online to #saveILF, as many others have said – this is not over- we go on fighting! We will take back independent living on our terms so that it can never taken from us again- that work begins now.
It is a sad day today, but it also one of pride for the dignity, force and dedication disabled people and our allies have shown in the fight for ILF- the fight for independent living will continue, the continued exposure of what the Conservative Government have done to disabled people will be shouted loud and clear as we join with more and more allies in solidarity against the evil that is being done to us under the myth of austerity -our rage like our strength will grow till the human rights we deserve are ours.
Downing Street, London, UK. 30th June, 2015. On the day the Independent Living Fund (ILF) closes and organised by Disabled People Against Cuts (DPAC), ILF recipients, campaigners and sympathisers meet outside Downing Street to hand over petitions calling on the Prime Minister to protect disabled people’s right to independent living. Over 25,000 signatures have been collected online supported by videos made by actors of Coronation Street and also during the Graeae Theatre Company’s 2014 UK Tour of The Threepenny Opera. After laying a wreath for the ILF, Schimmel, the battle horse of the Threepenny Opera led a march to the Houses of Parliament to continue the fight for dignity and equality. Last week, DPAC activists clashed with police inside the Houses of Parliament. Pictured: A RIP ILF wreath was laid outside Downing Street. // Lee Thomas, Flat 47a Park East Building, Bow Quarter, London, E3 2UT. Tel. 07784142973. Email: email@example.com. www.leept.co.uk (0000635435)
We were passed a letter anonymously last week. Atos the company responsible for misery and premature death now wants to help disabled people. Atos still do PIP assessments, and are in part responsible for the long delays, declared unlawful in the courts that have left people without income, food and at risk of losing their homes. This is something they share with Capita.
Yet, Atos will always be remembered for the Work Capability Assessment and ESA travesty. Their staff were filmed admitting that there were targets and saying that the job of assessing was toxic. But Atos were still laughing all the way to bank- After a prolonged campaign by DPAC and others Atos left the WCA contact early and were replaced by Maximus who seem no better.
We thought we’d publish the Atos letter in full , so that those people we receive emails from who have no money for food, who are being threatened with eviction and whose families have broken up due to the inhumanity of welfare ‘reform’ might apply
No surprise that Atos has sent out its letter as a PDF which is inaccessible for some screen readers , so we copy the main parts here
As you are well aware Atos Healthcare is contracted to assess claimants on behalf of the Department for Work and Pensions (DWP) for the Personal Independence Payment (PIP) benefit.
We assess some of our society’s most vulnerable people on a daily basis; and we recognise their hardships and struggles. The environment we work in means that our staff frequently undertake charitable activities for a wide range of causes. In support of this effort Atos Healthcare usually matches their collections. As a result there is a fund available for charitable donation and we are looking at how best to use that to make a positive contribution to supporting and improving the day to day living of vulnerable people.
We would like to support a different selected charity for each six month period. Naturally, as the PIP benefit is intended to support people with long term conditions or disabilities we feel that a disability or condition based charity would be appropriate.
We are aware that you have strong relationships and key contacts within many charities and we would value your opinion and expertise on selecting appropriate charities.
This work is being coordinated by Saleem Jawaid who is passionate about these activities and he would welcome your views on the most effective mechanisms for doing this and any issues that you think we might face. Contact details for Saleem are given at the end of this letter.
For anyone who’d like their ‘hardships and struggles’ recognised by Atos the number is Tel: 0118 914 9500 Ext: 18296 or if you prefer email then its : Saleem.firstname.lastname@example.org
For any disability charity taking money from Atos – we’ll find out and expose you
Anyone in Suffolk/Norfolk who’s in receipt of ILF, would you be willing to talk about your concerns on the closure of the ILF (Independent Living Fund)
I’ve been contacted by Linda Walker Broadcast Journalist from BBC Suffolk who has informed me that :-
“She’s putting together some research ahead of the ILF changes going through on Tuesday.
She’s keen to hear from any of you who have real concerns about the change and how it might impact on you personally. If anyone would be willing to share their story people do contact me on email@example.com or 01473 340 707.”