Archive for the ‘ activism ’ Category

DPAC & UK Uncut – Message From The Invisible

I’m getting up very early tomorrow morning to head to London with my other half. We are planning to join with other sick, disabled and UK Uncut activists to try to send a message to the Coalition. We will not be punished for deficit caused by the excesses of the City. We will fight the damaging changes the Welfare Reform Bill is threatening to inflict and we will not let the government off lightly.

You can read more about it here – UK Uncut Press Release & at the DPAC website.

If you can make it that would be great, though I totally understand peoples ability to be there in the flesh is limited by way more than just will alone.

You can also help raise awareness by blogging about it, bugging the media to get the message out and tweeting about it using the #invisibleinvincibles, #dpac & #ukuncut hashtags.

See you on the other side!

Fighting For Amendment To The Welfare Reform Bill

Today we are fighting for an amendment to the Welfare Reform Bill (WRB). We [a large group of disabled activists, disability charities and politicians] believe that the following amendment will reduce some of the harm the bill in it’s current form may well cause.

The amendment is as follows:

Clause 80 – Amendment 50E


Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.


When the ESA came into effect the ATOS assessments were never trialed first, and we now have a 40% (70% with legal/advocate support) of their negative decisions being over turned at appeal tribunals. I was one of those people, in fact many of my friends were in that category. We can’t let that happen again with DLA/PIP. We need to spread the word about this amendment and try to convince the Lords to vote for it. We have a few hours but please, do what you can.

If you know a Lord on a social network site, if you have access to their email address (many keep them private) or if you’d like to write to them about other issues with the WRB then please do. There is a list of names of lords (complete with their party affiliation) here.

  • If you chose to write to them simply address your letter to [Name of the Lord], The House of Lords, London, SW1A 0PW. 
  • You can fax individual Lords, send it to 020 7219 5979. 
  • You can even telephone the main parliamentary switchboard and ask if you can be connected by calling 020 7219 3000 or you can leave a message by calling 020 7219 5353.

The House of Lords does not except ‘bulk mail shots’ so every letter or fax needs to be individually addressed

Report By Disabled People Slams Government DLA Plans.

Today a Report compiled by disabled people, led by the wonderful Sue Marsh & Dr Sarah J Campbell has been released. I’m posting the body of the press release here.

Revealed: New Report shows overwhelming opposition to coalition’s disability benefit reforms kept hidden by the government Conservative Mayor of London heavily critical of government’s plans for Disability Living Allowance

The report was entirely researched, written, funded and supported by disabled people.

A report published today (9 January) finds that Government misled MPs and Peers over the
hostility to disability benefit reform. It finds that Parliament has been given only a partial
view of the overwhelming opposition to the Coalition’s planned reforms of a key disability
benefit, Disability Living Allowance (DLA). It finds that this opposition was previously not
released to public scrutiny by the Government.

It is based on the responses to the government’s own consultation on its planned DLA
reforms, which were only made public once disabled people requested them under the
Freedom of Information Act. Findings included:

  • 98 per cent of respondents objected to the qualifying period for benefits being raised from 3 months to 6 months 
  • 99 per cent of respondents objected to Disability Living Allowance no longer being used as a qualification for other benefits
  • 92% opposed removing the lowest rate of support for disabled people
In all three cases, as well as many others, London’s Conservative Mayor, Boris Johnson also
objected to the proposed changes. He said in his response

“The Mayor would call for the Government to retain the three‐month qualifying period as the increase to six months will mean that people with fluctuating conditions have increased difficulty meeting the qualifying period. People with fluctuating conditions face the same barriers that all disabled face in relation to higher costs of living and DLA is essential to maintain a decent quality of life.”

“We would recommend that the passporting system remains the same as under DLA as it has worked well when signposting people to additional benefits to which they may be entitled.”

“The Mayor does not support this change, as those on the lower rate care component may have additional costs as a result of their impairment but may lose their access to this benefit as part of the proposed removal under the reforms.”

The Mayor also objected to the government’s strategy for clamping down on disability benefit fraud, arguing:

“The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.”

The Mayor’s views were representative of the overwhelming majority of responses to the
Government’s consultation..

The new report, Responsible Reform, suggests that the government’s DLA consultation
breached the government’s own code of practice and was “highly misleading”. Researchers have used the Freedom of Information Act to obtain more than 500 responses
to the consultation that were submitted by disabled people’s organisations, disability charities and other groups – including the response submitted by Boris Johnson – and have carried out the first detailed, independent analysis of those responses.

The analysis showed overwhelming opposition to replacing DLA with a new Personal
Independence Payment (PIP). The government also plans to cut spending on DLA/PIP by

The new report has been researched, written and funded by sick and disabled people, thousands of whom contributed to the research through their use of social media.
Its authors now hope to use the report to persuade members of the House of Lords to back
an adjournment debate calling for a pause of at least 6 months. In that time, plans for PIP
should be reconsidered with the views of disabled people properly taken into account.

The report has already been backed by organisations and disability experts including

Disability Alliance
Papworth Trust
Bert Massie CBE &

Disability Alliance ‐ “The Government’s mis‐portrayal of the DLA consultation response is
truly shocking and could represent a betrayal of the process of consultation and engagement with disabled people. The Government has refused to provide a justification for a 20% cut in DLA expenditure and we fear that the same faulty rationale, misunderstanding of disability and higher costs of living and poor judgement exposed in this report sadly underpin the basis of the entire reform plans.”

Paul Farmer, Chief Executive of the mental health charity Mind, said:

“The ‘Responsible Reform’ report is essential reading for everyone with an interest in
Disability Living Allowance (DLA) reform including the Government and Department for
Work and Pensions Select Committee. It is a vital contribution to the debate on reform and a
huge achievement for the volunteers who have produced it.
“As well as forensically deconstructing many of the arguments offered by the Government
for their proposed reform, the report shows that much of the rise in claimants over recent
years has been down to better access to the benefit for people with mental health problems,
whose needs are often fluctuating and invisible.
“Rather than getting out of control as the Government claims, DLA has been increasingly
going to people who really need it. The proposed 20 per cent cut to the budget will have an
enormous impact on many people with illnesses and disabilities, and we remain very concerned about the unintended consequences this could lead to.”

Papworth Trust supports this report’s concerns that the decision to reduce DLA by 20% may
have been based on incomplete or misleading data about the reasons for growth in DLA.
Our recent survey found that almost 9 out of 10 people would have to cut back on essentials
such as food or being able to get out and about if their DLA payments were reduced or
stopped under PIP. We believe that the proposed 20% cut will push more disabled people
into poverty.

Given that this report was entirely researched, written, funded and supported by the people
that these changes will affect, we believe that the questions it raises should be answered by
the Government.

Richard Hawkes, Chief Executive of disability charity Scope said:

“This report once again reveals the very real concerns disabled people have about the
government’s reform of Disability Living Allowance.
“We know that this benefit is a lifeline for millions of people and families.
“It gives them the opportunity to meet the extra living costs they incur as a result of living
with a condition or impairment and we know that people are genuinely worried about the
impact these reforms will have on their quality of life.
“We urge the government to listen and act on these concerns and to ensure its replacement
takes into consideration all the barriers disabled people face in everyday life so they can live
independently and play an active role in their local community.”

Sir Bert Massie CBE said:

“The Government’s proposed changes to the system of financial support for disabled people,
from Disability Living Allowance to Personal Independence Payment, has caused anxiety to
many disabled people. I have always found the explanations offered by the Government to
be unconvincing and I therefore welcome this report which analyses the evidence on which
the decisions were based. It shows that rather than being broadly welcomed by disabled
people and disability organisations the new proposals were subject to widespread criticism
and alarm. I hope this report will result in the Government reviewing its proposals so they
enhance rather than damage the lives of disabled people.

Simon Barrow, Co‐Director of the beliefs and values thinktank Ekklesia, said:

“This is an excellent piece of research. There remains a gaping chasm between the government’s rhetoric about maintaining support for disabled people and the actual
evidence about the impact of the changes and cuts it is imposing. The voices of those at the
sharp end are not being listened to in a way that shapes policy. The concepts of justice
dignity and social solidarity are being eroded and replaced with a piecemeal approach to
provision which sees care as essentially voluntary.”

Sue Marsh, the disabled blogger and activist who led the research, alongside Dr Sarah J
Campbell, said:

“For some years now, poorly designed Social Security reforms have created a “trust deficit”
among disabled people towards government.

“We believe that reform must be measured, responsible and transparent, based on available evidence and designed with disabled people at the very heart of decision‐making. Currently, we do not believe this to be the case. 
“While disabled people welcome reform of DLA where it will simplify the system and better support their needs, they do not want a new benefit. They believe it is a costly irrelevance during a time of austerity.
“We urge members of the House of Lords – across party political boundaries – to take note
of this research and the strength of opposition to the proposals. It is not too late for them to
halt these deeply damaging reforms.”

Another contributor to the report, Kaliya Franklin, said:

“Cutting spending on DLA will increase the burden on local authorities, the NHS and
community services at the very time they are seeking to find savings by reducing eligibility,
particularly for social care support.
“Sick and disabled people have voluntarily combined our skills, experience and talent to
produce this report, demonstrating that if we are able to work in the way our conditions
demand we can participate in the world of employment, but only if it is willing to receive us
on our terms, with more flexible ways of working and participating.”

Among the report’s conclusions:

  • Only 7% of organisations that took part in the consultation were fully in support of plans to replace DLA with PIP
  • There was overwhelming opposition in the consultation responses to nearly all of the government’s proposals for DLA reform
  • The government has consistently used inaccurate figures to exaggerate the rise in DLA claimants
  • The report shows that nearly all of the recent increase in working‐age claimants of DLA has been associated with mental health conditions and learning difficulties.
  • Between 2002 and 2010, the number of working‐age DLA claimants – excluding
  • those with mental health conditions and learning difficulties remained remarkably
  • stable
  • 98% of those who responded opposed plans to change the qualifying period for PIP from three months (as it is with DLA) to six months
  • 90% opposed plans for a new assessment, which disabled people fear will be far too similar to the much‐criticised work capability assessment used to test eligibility for employment and support allowance (ESA)
  • Respondents to the consultation repeatedly warned that the government’s plans could breach the Equality Act, the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities

Other Points to bear in mind:

  • The government’s response to the consultation on its DLA reforms was published in April 2011
  • Discussion of the Welfare Reform Bill is due to resume at its report stage on 11 January in the House of Lords
  • The report was written by Sue Marsh, the author of the blog Diary of a Benefit Scrounger, and Dr Sarah J Campbell
  • Employment and Support Allowance is the replacement for Incapacity Benefit introduced by the Labour government in 2008
  • The research suggests that, although the number of people with mental health conditions claiming DLA has risen continuously over the last 15 years, only one in 100 working‐age adults is claiming DLA in association with a mental health condition. This is far lower than estimates of the population prevalence of more severe mental health conditions. This is a global phenomenon and unlikely to be related to the design of the UK benefit system.
  • The research also suggests that the rise in the number of people with learning difficulties claiming DLA is likely to be due to earlier diagnosis of certain conditions
  • Boris Johnson’s full response to the consultation can be found here:

If anyone reading this want’s to get in contact with Sue Marsh please either drop me a line & I can pass on contact details or please visit her blog, Diary of a Benefit Scrounger.

Please do what you can to spread the word.

Meeting With Cllr MacKay

Today I had the pleasure of meeting with Cllr James MacKay as referenced in this earlier post.

He came over to our house where we had a talk (or more he had to listen to me talking) about what it was like becoming disabled back in 2009 and how one by one all my assumptions about things like the ease of getting help or the amount of accessible buildings were slowly stripped away. Things like the struggles with applying for ESA, failing my initial Work Capability Assessment (WCA) and having to go to an appeal tribunal. The knock on effect that had when my DLA application was turned down simply because of my failing of the WCA so I had to go to appeal tribunal for that as well and the problems we faced being disabled but not being able to access any services without being in receipt of DLA. Next came a bit of talk about the NHS wheelchair service before moving onto our social services assessment (where we were refused direct payments, mainly because they couldn’t look at the interplay between my physical & mental health issues). As well as our recent Occupational Therapy assessment which had decided that because I can step out of my door I am not allowed a wheelchair ramp. Never mind that I can’t get myself and a wheelchair outside.

On that note my partner got my electric chair outside and grabbed the manual chair and we went for a roll which I think made an impression. Things that all who use wheelchairs, or even regularly push wheelchair users loathe became visible to another. Things like;

  • The camber on pavements that forces your chair to drift towards the road (if not slide into it when it’s severe) 
  • Those lowered kerbs that are so high you have to have a couple of goes at hopping up them (especially if they have a depression in front) which can leave you stuck in the road for longer than you feel safe
  • Crossings which have a lowered kerb on one side and none on the other which force you to drive along the road dangerously
  • Paths made of poorly maintained paving slabs so full of gaps and cracks your front castors or rear wheels get trapped
  • Shops with one step into them
  • Cars parked over lowered kerbs or obstructing paths
  • Drainage grates in front of lowered kerbs which trap the castors of the unsuspecting
  • No lowered kerbs at all!

We headed back home after a quick ‘tour’ with me pointing out just how hard it is to mobilise 50-200m once in a day when you don’t have the pain and fatigue so often prevalent with those who use wheelchairs (and are not those superb paralympians). We had a quick talk about Christine Miserandino’s Spoon Theory and pacing as we headed back to the house.

We finished with a bit more of a chat where we covered once more some of the pertinent areas from earlier whilst I dealt with a quick bout of sickness before moving onto what practical steps could be taken to help.

A lot of what I spoke about falls under the remit of the DWP and is national level stuff which really does need to be dealt with by MPs and similar, something punching ever so slightly above the weight of a fairly new local councillor… Still, there was plenty that could be done locally too. The DDA 1995 has been in place for 16 years now and in all that time Birmingham council has never found the time to make its pavements accessible to all of its citizens, yet I don’t see any roads that discriminate actively against drivers with disabilities. It’s sad how low down the list equal access for those with disabilities is and unless someone makes a push I think it’ll stay that way for some time to come. Shops on my local High Street have told me the reason they don’t have portable wheelchair ramps is because the council have told them they can’t – if that is true that is something that needs challenging. Cuts made by the council to Adults & Communities have a very real impact on disabled peoples ability to interact with the world (by stopping them leaving the house independently for example ) and those cuts can be fought against by local councillors. That’s just a few things off the top of my head, the list is much longer which is both a shame and an excellent opportunity for improvement.

I’m just glad to have had the opportunity to give a quick glimpse of life with a impairment to someone with some power to make their constituents’ lives better or worse. I should dearly love to be able to do the same again with other politicians in the future but time will tell on that front.

Regardless it’s time for me to get some rest so I shall sign off for now.

The Hardest Hit October Action

Today, up and down the country, disabled people and their carers and allies came together to protest the unfair and overly harsh cuts to crucial services they are suffering under the current government. We rallied under the banner of ‘The Hardest Hit’, a coalition of hundreds of disability charities and individuals.

We headed into to Birmingham this morning to join the local rally and after grabbing a quick hot drink we made our way over to Victoria Square (opposite the Council house) and said hello to the brave souls at Occupy Birmingham.

The Occupy Birmingham Camp

Just before 12pm a band started up on the main stage to welcome us all and to attract attention from the passers by. They were stunning. Really entertaining and really talented, I just wish I could remember their name so I could hunt out some more of their music.


At 12.30 the rally began and there were some amazing, heartfelt speeches from disabled members of the community. The welfare reform bill, ATOS and the cuts were all heckled whilst cheers went up to those hammering home the point that we just wanted to live and be respected rather than survive as objects of pity. It was noted (bitterly by many) that no Conservative or Liberal Democrat councillors or MP’s had accepted the offer to come and speak, or even come and show solidarity. Jack Dromey (Labour MP, Erdington) and a ex-labour MP involved with the local mayoral campaigns came to speak. Jack particularly went down very well. There was also a showing of Labour councillors, including my own, James MacKay. Where it was lovely to see them supporting us there is still a feeling of betrayal when one remembers that they were the party that inflicted ATOS and the massively flawed work capability assessment (WCA) on us all. It would be nice to see the party start taking disability seriously and working to improve things like the WCA rather than working to reduce the amount of money it pays the genuinely sick and disabled.

Jack Dromey MP speaking
For me, this was a wonderful chance to meet some lovely new people and feel a little less alone. Where, on one hand, it’s nice to know you are not the only person to have been wrongly given ‘0’ points by ATOS whilst severely disabled it’s also very depressing you start realising just how wide spread it is. It also gave me a chance to try and impress how these cuts are effecting people daily to politicians and some members of the press. I’m not sure if it will have done any good, but I feel better knowing I tried.
To finish off I thought I’d share some of the super signs people had;
Now I have all but run out of ‘spoons‘ so I’m going to take a lot of pain medication and get some rest.

Edited to add some quick links:

BBC article on Birmingham Action with one of the wonderful speakers.
Another article by Damon Rose for the BBC.
BBC on the Cardiff Action.
Guardian article.
Birmingham Mail article.

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