Beyond Barriers: DLA and powerchairs

This post is written as part of the #BeyondBarriers campaign, launched as part of the release of the Spartacus Report "Beyond Barriers".
This research into ESA, WCAs, the Work Programme and employment for sick and disabled people proposes an alternative system under the vital principle of "Work for those who can, Support for those who can't".
This post is an example of how proper support can change your life for the better. In my case, DLA.
Stories from other disabled people can be found here.

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The letter from NHS Wheelchair Services lay on the table. It was short and to the point and completely and utterly devastating. “As you can stand on your own and walk more than two steps we cannot provide you with a powered wheelchair at this time”.

I looked at my trusty manual wheelchair. As my muscle condition had progressed it had become more and more useless. Now, unless someone else was there to push it, it was nothing more than an oversized paperweight.

I looked out the window at the world denied to me. I was in the middle of my PhD. It was going well. I loved it. I had made wonderful friends among my fellow students and office mates. Lately though I had stopped going. I couldn’t leave the house. My legs couldn’t take me further than half way up the garden path and unless someone was willing to push me not only to work but around the office, even just to get to the loo, I was imprisoned at home.  As for such things as posting a letter, picking up something from the local shop or socialising, these were becoming a thing of the past.

How could this be? How could someone unable to leave the house without an electric wheelchair not qualify for one under the NHS? How could someone become housebound, not through illness or their condition, but because they aren’t given the equipment they require? Was I supposed to give up my PhD? Give up on my dreams of a job?

Well, I was lucky. This all happened just over 10 years ago and I had been entitled to High Rate Mobility DLA (Disability Living Allowance) for a number of years. My muscle condition was progressive and I knew it was only a matter of time before I would require an electric wheelchair. I was wary of wheelchair services and so diligently started putting some of my mobility money aside. It wasn’t too long after that NHS letter that I finally managed to save just enough to buy an electric wheelchair thanks to the vital additional help of some disability related funds from my university.

I did so and it literally changed my life overnight.  Rain or shine I used to go outside for the pure pleasure of being outdoors on my own!  I carried on socialising, becoming a regular at the local pub and member of our PhD quiz team once more! I was independent, not requiring carers or friends to go out and do things for me.  Best of all, I continued and obtained my PhD and went on to get a job in that field.  It is not too much to say that DLA changed my life.

Which is why I am worried today for all the disabled people in similar situations to me. Under the replacement benefit for DLA, PIP, I would not have qualified for higher rate until much later on. I would not have been able to save up to buy my wheelchair. I would have remained housebound. No life, no PhD, no job.

Extremist? Moi?

Extremist: a person who advocates fundamental political, economic, and social reforms by direct and often uncompromising methods.

Wow. That sounds pretty scary. I'm thinking violent demonstrations, perhaps even possible terrorist activity from people making unreasonable and impossible demands.

But actually apparently I'm talking about myself, which I have to say comes as a bit of a surprise.

For the past couple of years I've been involved in some disability activism. This has taken various forms. Posting on this blog is one. Writing to my MP is another. Signing petitions such as the WoW petition which simply asks the government to do an impact assessment on disabled people of their welfare reforms is yet another.

My main success has to be of course the Spartacus Report, aka "Responsible Reform". Using government data this carefully constructed 40 page long report contradicted the government report which claimed disabled group's responses to a consultation were in favour of replacing the disability benefit DLA with PIP.

I may have been the main co-author, but it was written and coordinated with a number of other fellow disabled people (all names in above link). It was then shared by thousands of disabled people all coming together in unison to publicise it on Twitter, trending as #iamspartacus, forcing government and media to take notice. 

The research itself was well received and acknowledged. It has been used countless times in Hansard and investigations by committees such as the Joint Committee on Human Rights.

Following this the We Are Spartacus network was born. With my failing health I am much less involved, but there have been other great people to take up the task.  

Further reports were researched and written, from responding to further consultations, to analysing the effects of the implementation of PIP to warning about problems implementing a cap on social care in Worcestershire. These were also well received and used. 

Members of the group are now involved in discussions with politicians in an attempt to improve policy, including forming part of the Labour Taskforce.

It was therefore a surprise in today's Opposition Debate involving the Cumulative Impact Assessment to hear the We Are Spartacus group being called "an extremist group" by Paul Maynard MP.

I understand that being criticised and disagreed with may not be pleasant, but lying in bed with a laptop, looking up government figures and statistics and then writing long winded polite reports pointing out potential flaws in disability policy is rather a long way from extremist activity!

We were not the only ones singled out. We were joined on the naughty step by Pats Petition and the WoWpetition, who had the temerity to set up a petition asking for the Cumulative Impact Assessment. Both have been signed by 49,000 and 65,000 people respectively, presumably also all extremists. 

Astonishingly we were later to be joined by the independent, non partisan Citizen's Advice Bureau who were accused by the Minister for Disabled People Esther McVey of being biased and left wing. They had made the mistake of recently criticising government policy.

It is fairly obvious that pointing out problems or flaws in disability policy is enough to be publicly smeared in the House of Commons and labelled biased, left wing, or extremist. This is not conducive to constructive dialogue, which is essential if any progress is ever to be made.

There is much anger following these insults. It is my worry and my suspicion that this may, in fact, be intentional. Some people are now wondering aloud if they should "act like extremists", saying after all, that if that is what the government wants, that is what it should get.

This is extremely dangerous. Any foolhardy act will only give fuel to the government's allegations. They will then in all righteousness be able to refuse to engage in any further dialogue.

It is therefore vital at this point to keep calm and ignore the insults that keep coming our way. In the mean time we must continue to do what we have always done: expose the facts and try to find new solutions. Let them call us extremists for it if they must. And if that really is the new definition of extremist, then so be it. I have done nothing to be ashamed of. In fact, I am proud of it.

Note: In a bizarre twist, when pushed on his "extremist" slander by Anne McGuire, Paul Maynard MP started angrily talking about special schools. This is strange because WeAreSpartacus has never had anything to do with this issue in any shape or form that I am aware of... Weird!

Spartacus: The Day the Government Condoned Plagiarism

EDIT: March 25th
My analysis of the situation has now been corroborated by Professor Beresford himself in an open letter to DWP ministers.


Let's say hypothetically that I wrote a book or an academic paper.
Let's also say hypothetically that a famous person were kind enough to write and sign a foreword to my book or paper.

What do you think would happen if I then tried to pass off what they had written as my own work? Let's say I quoted something from their foreword and said it was from me because it was now part of my book or paper.

Quite rightly there would be outrage. The famous author or academic would come down on me like a ton of bricks. And I would deserve it. No one should ever take credit for someone else's work.

But equally this goes the other way. If the famous person had written something someone found controversial, no one could say that I personally wrote it.

Yet on Thursday 21st March 2013 I was astonished to see our government do exactly this.

The minister for the DWP Mark Hoban had categorically refused to see a delegation of disability representatives with MP Michael Meacher. When pressed why he insisted that he would not see Spartacus in particular. Michael Meacher was shocked by this given that he feels that Spartacus is currently one of the leading disability groups and prepared for constructive discussion about important issues surrounding ESA and the WCA. He therefore asked for an adjournment to discuss this " wholly unreasonable and unacceptable behaviour of DWP ministers".

The adjournment took place on Thursday. The full video of the debate can be seen on this blog. Also available on Michael Meacher MP's blog is a text transcript of his opening statement (lovely praise for Spartacus incidentally :) ) and all objections raised.
Mark Hoban was absent and his place was taken by minister for disability Esther McVey After a lot of waffle the reason given was that they felt a meeting wouldn't be "constructive".
Their justification was a single quote out of the 6 or 7 reports produced by Spartacus. Her precise wording is as follows:

[the Minister for Employment] did not necessarily feel that the dialogue would be constructive because of the words used by Spartacus in this regard:
The WCA is a statement of political desperation. The process is reminiscent of the medical tribunals that returned shell shocked and badly wounded soldiers to duty in the first world war or the ‘KV-machine’, the medical commission the Nazis used in the second world war to play down wounds so that soldiers could be reclassified ‘fit for the Eastern front"

The problem is that the quote is not by any of the Spartacus authors. It is in the foreword to the People's Review of the WCA, written by Professor Peter Beresford OBE, BA Hons, PhD, AcSS, FRSA Dip WP Professor of Social Policy Brunel University.

Were I to quote anything from that passage in any academic text or book, I would HAVE to put the author as Professor Beresford, not the spartacus authors. The source is a Spartacus document, yes. The author is not.

The difference appears to elude McVey who by the by, not only attributed the quote to Spartacus, but mentions "other such comments".

I personally wrote a great proportion of the original "Spartacus Report".

There were no other such comments. In fact there were none at all. I took great care to be polite throughout.

What was said yesterday came perilously close to slander.

I'm not even going to go on to address the reasonableness of refusing to meet a delegation on the basis of that single quote when held up against Spartacus's strong history of constructive, reasonable, rigorous and factual research and debate.  

If the government is desperate enough to cherrypick a single quote out of literally hundreds of pages in order to justify ignoring us, and if the only one it can find is not even written by one of our authors, then I don't think there is much more to say.

Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.

Spartacus: The Responsible Reform Report

It is now a couple of months since I co-authored what became known as the Spartacus Report as the main author Dr S.J.Campbell. The results were beyond our wildest hopes. The Responsible Reform report is thought to have played a part in the government defeats in the House of Lords votes as well as in obtaining the concessions in parts of the Welfare Reform Bill. But perhaps most importantly, hundreds if not thousands of disabled people came together in a way we had not foreseen. Many feel less alone and still more are now taking a far more active part in fighting these reforms. I see disabled people all over the net proudly announcing that they are "Spartacus".

This makes it all worthwhile. It is well known that many of the Spartacus report creators are very ill as a result of all the campaigning, the most famous of whom are naturally Sue Marsh and Kaliya Franklin who have been tirelessly active for the past 18 months.

What is less well known is how the Responsible Reform came about and how close Spartacus came to never happening at all.

I would first of all like to thank the group of people who placed the FOI (Freedom of Information) requests which enabled us to get hold of the 500 odd group responses to the DLA consultation. Without this forward thinking step nothing would ever have happened.

This data was then passed on to Sue Marsh who started to look through it and recruited a few volunteers to assist. I became one of these quite by accident having offered to help after she mentioned she was doing a "research project" in one of her blog posts.
Over the next few months people simply read the data and tried to sort through it in an ordered way. However most of the volunteers fell by the wayside.

On December 06th all hell broke loose. I received a panicky email from Sue saying we still had half the data to go through but only a week and no volunteers left.
This was "crunch time". I doubted Sue could manage on her own. On the other hand if I offered to help I knew it would be a mammoth task and my health would suffer hugely. I spent 3 hours wrestling with myself before winning through and saying I would do it. It was a very close call. The Spartacus Report probably nearly ended there and then.

As it turned out we still had a month left. I went through all the remaining data as fast as I could and summarised it. A delighted Sue pointed me towards the Government's response to the consultation and asked if I could have a "quick look" and note down any discrepancies.

After a moment of pure disbelief reading the government's report I set to work. By this time I was extremely ill and could only work 15 minutes per hour. I was pushing myself to the limits to get it done knowing that if I didn't no one else would and it would all be in vain. I sent the result to Sue whose response was "crikey it is a bloody thesis!". This now forms the backbone of the Spartacus report: the section dismantling argument by argument the government's response to the DLA/PIP consultation. Sue was so excited by it she decided to pull out all the stops, deciding that we finally had something that could upset the government.

My job now thank goodness was ended for the time being and I retired to bed for a full 5 days.

Over the Christmas period Sue now recruited and coordinated other people to add to the report and turn it into the finished product, notably Declan Gaffney who wrote the statistics section. Sue herself wrote the executive summary and the press release. Kaliya was brought in to write a conclusion and others came in to help with editing, formatting and the important job of checking details, finding quotes and regulations. These include Mason Dixon, Leigh James, Sam Barnett-Cormack , Rhydian Fon-James, Dawn Willis and a few others. It is a sad indication of the times that these last wish to stay anonymous for fear of repercussions from the DWP or others.

Sue Marsh and Kaliya Franklin then used their extensive media contacts they had painstakingly build up over the past 18 months to prepare for the release of the report. With the help of the other Responsible Reform contributors they planned their attack.

At this stage the wider disability community finally got involved although secrecy was still kept. Funds were needed for the printing and distributing of the report to all the MPs and peers ahead of the voting. It is a measure of the trust people have in Sue Marsh that the £2000 required was raised within 24 hours of an appeal being launched on her blog despite the full details of its purpose being kept secret.

Other people also got involved in a more practical way, volunteering to print, post and help in any way they could. Others volunteered to be constituency reps and contact their MPs on the day of release.

Finally the Responsible Reform Report was launched on Monday January 09th and soon became dubbed the Spartacus Report. I opened my own twitter account as Spoonydoc and joined the other authors and helpers in making as much noise as we could. It worked! #spartacusreport trended all day on twitter and received support from celebrities such as  Stephen Fry, John Prescott, Alastair Campbell, Billy Bragg, Val McDermid, Kate Long, Julie Hesmondhalgh, Sue Perkins and Tim Minchin. It is now said to be the most successful social media activism ever.

Disabled people everywhere appeared to finally find their voice. The Lords found themselves deluged by emails pleading to fight the Welfare Reform Bill. This added to the work already done by other disability groups such as DPAC, black triangle, and various charities started to count.

The government was defeated by no less than 7 amendments in the House of Lords and concessions were made on other issues including the roll out of PIP.

As for the Spartacus Report, initially ignored by the mainstream media, that all changed.  Sue Marsh appeared on Newsnight, and others including Kaliya Franklin appeared on numerous radio shows. Perhaps most importantly disability was finally shown in a positive light with supportive articles from newspapers traditionally full of "scrounger" rhetoric such as the Daily Mail. I would like to thank Sonya Poulton for her efforts in this. However the effort of all this had by now as we know taken its toll on the likes of Sue and Kaliya.  I myself am still recovering from writing the report itself two months on. Seriously ill, I have been unable to resume any disability campaigning at all and am finding it frustrating watching others work themselves to the ground without being able to help them.

Disappointingly the government resorted to "financial privilege" to overturn these defeats and push ahead with its bill. Now back in the Lords, further amendments to the Welfare Reform Bill have been won and more concessions awarded, but the future still looks bleak for many. However we must remember that it is better than it could have been.

The fight though must continue. And it seems that many disabled people want "Spartacus" to be a part of this.

Astonishingly what started as a report into a fudged government consultation has now become a loose informal disability movement.

My hope is that "Spartacus" will help by giving every disabled person assistance, ideas and opportunities to do their bit however small. Because that is the only way we can hope to win this.

If you think it is impossible for you to help, a simple example is signing Pat's petition and asking people you know to do so too.

Some wonderful people have come forward to help "Spartacus". They have written a simplified version of the new draft PIP criteria for instance. They were also involved in helping Sue write the briefing for the Lords ahead of the voting on Tuesday February 14th.

There is a Facebook page for people who want to be involved as well as a website hub for information and ideas so that everyone can do something.

Have a look. And become "Spartacus".