Tuesday 21 August 2012

Disability Campaigning 2012

I believe passionately that the success of disability campaigning in this new not-so-bright millennium is down to the cohesion of disparate groups, all with different messages and different styles, attacking this government on every level.

Too intelligent to spend our time bickering and pulling apart, campaigners have attacked this so called "Welfare Reform" with commitment, drive, innovation and desperation.

We don't campaign because we want to - far from it. Many campaigners have made themselves so sick they've been hospitalised. Karen Sherlock died campaigning for what she believed in.

Kaliya Franklin is so unwell, she can barely leave her house.
Sarah Campbell (@SpoonyDoc) is having the worst flare of her life and is now totally housebound.
I've been in and out of hospital since January and have to go back today.
Secret Spartacus is also having a terrible flare and is finding it increasingly hard to cope. .
The We Are Spartacus group is also struggling to keep afloat due to sickness and exhaustion
Nicky Clark (@mrsnickyclark) is trying to hold her family together

What was Spartacus? Well, back in January it was simply a hashtag to launch a report worked on, produced, researched, designed and distributed by sick and disabled people. It spoke for no-one and anyone. It was a call to act, to uncover, to expose this government and all their dirty tricks.

Could Spartacus have happened in a different time or place? No. Without social media, sick and disabled people would still have no voice, still be reliant on big charities to speak for us.

But can social media act alone in a bubble? Of course not.

Would disability rights be on the agenda without ALL of the work done by different groups and individuals  to highlight our cause? Of course not.

Black Triangle worked tirelessly to ensure that the BMA voted against Work Capability assessments. Their website is currently the best source of information for those seeking to help in our struggle.

DPAC have consistently and tirelessly taken the fight to the streets and to Atos, the private IT company charged with finding sick or disabled people fit for work.

Other groups have focussed on workfare, such as Boycott Welfare Reform.

Nicky Clark defends sick and disabled people from hate speech tirelessly and often thanklessly

Atos Stories aims to compile human tales of suffering and despair caused by this farce of a system.

For my part, I have worked more than anything else, to bring the Labour Party back to a disability agenda that listens to the sick and disabled, rather than preaching to us. Much of this work is behind the scenes, or relies on a well timed article on my blog or in the Guardian. That is my personal passion and I will not be satisfied until Labour accept their part in introducing ESA and it's failures.

Would I "work with the enemy"? Damn right I would. If they asked. I worked with the Lib Dems at a time when no-one else would, changing their party policy to oppose WCAs. For all the good it did, it was still a change of policy.

Would I sit at a table with Atos or Iain Duncan Smith? Damn right I would. If they asked. Which they haven't. I will do anything to improve the situation for sick and disabled people as it stands. But let me be very clear - I want WCAs scrapped and I do not want PIP to be introduced. 

Nonetheless, I have not yet managed to persuade Labour that they should support either of those positions. Yet. I have not managed to persuade large charities to support them either. Yet.

I believe that any small change makes things better for people like me. People like you. If your WCA can be fairer or kinder or more accessible, I will take those "scraps from the table" - it would be ludicrous not to.

If PIP can be designed to be more accurate or fairer than ESA, of COURSE I would do all I could to make it so. If I can ensure that fewer seriously sick or disabled people undergo a face to face assessment, I will. If I can change the descriptors - for ESA or DLA to make them fairer, to ensure that fewer people face misery or poverty, I will. If the Conservatives ever deigned to discuss their welfare agenda with me, I would sit at a table with them.

But not only do I respect those that won't, I believe there is a desperate need for both approaches.

I imagine the DWP as a bullseye and every group is hitting the mark from a hundred different angles.

Some by protesting right outside Atos offices, some by preparing academic work to challenge the lies of the DWP, some by working behind the scenes to win the heart and minds of our politicians, some by isolating the DWP to ensure that doctors won't support this failing system, some by telling their stories and allowing them to go viral, some by challenging press releases and facts the moment they are uttered and setting the record straight, some by appearing on TV or Radio to take the issues to a wider audience, some opposing hate crime....

Bang! Bang! Bang! Each arrow hits it's mark and every time we win a small victory, the DWP get weaker, their position becomes less and less tenable.

But we cannot work alone. Simply lobbying politicians would not get us very far.
Simply protesting outside Atos offices would not get us very far.
Working with the BMA in isolation would have been fine, but would not have had nearly the impact it did if no-one else was opposing WCAs
Producing a report or two would mean nothing at all without armies of supporters tweeting and sending them to their MPs and making sure they are read by the widest audience possible.
Complaining about hate crime would do little in a bubble
Telling our stories would not mean very much if no-one knew what we were talking about.

Other movements have come and gone. Protesting and campaigning is hard. It is exhausting. As chronically ill or disabled people, our strength lies in doing what we can, when we can, respecting each other's views entirely, never pulling apart always pulling together and all realising that no matter what happens, we are all on the same side, we all want the same things.

We may choose to achieve them differently, but that's what makes it work. That's why we can attack the DWP from so many different angles. That's why they have no idea what we will do next.

So I will spend every last drop of energy trying to hit the mark. I don't care in the slightest how I do it or who I do it with, but if I can score a "win" I will and if it makes this terrible mess better for just one person who is ill or struggles to cope with a disability, it will have been worth it.

But make no mistake, this system is cruel, dangerous and based on flawed ideology. It will collapse and I will fight to the end to make sure that it does. But I'm just a blogger. A writer, A lobbyist.

I write what I think and no-one controls what I say. Sometimes you will agree with me, sometimes you won't, but maybe if I keep saying it, some of it gets through. I am no more or less than words on a page.


  1. Your words are no more and no less than a lantern in the dark for me, a sword along a dangerous path. I'm a self-employed parent and a wheelchair user, and I'm standing with you, mate. #thisisthefaceofdisability #noscroungershere

  2. Sue,"I'm just a blogger. A writer, A lobbyist" does not cover the effort you have put into this campaign, Sue for saint hood campain will start soon :)

  3. I have my WCA in 2 days time and your words have encouraged me. I have chronic depression and anxiety and the main trigger for this is stress. If they try and force me back to work I will suffer.

    1. what part of country are you in?

    2. I had my WCA this morning and was amazed at how sympathetic the assessor seemed. I went prepared to fight my corner and didn't really need to. Of course, I haven't had the results yet - I might have been fooled - and it may be something to do with the breaking news in the Guardian that 12 ATOS employed doctors face being struck off for improper conduct. Remind your assessor of that if they are too unsympathetic with you!!

    3. Sorry, I've just spotted the article about the 12 doctors was published on August 13th - just aw it on the mE Association website today. http://www.guardian.co.uk/politics/2011/aug/13/atos-doctors-improper-conduct-disability?fb=native&CMP=FBCNETTXT9038

    4. When I went recently for my WCA I found the Assessor OK but when I received the report it was rubbish. It ignored my mental problems & the Assessor decided I could do things like bending over in spite of the fact I cannot do so properly. I had my ESA claim disallowed as I am FIT FOR WORK. This news has caused my depression to get worse & have had anxiety attacks. My medication has had to be increased. I am now going through the Appeal process which has caused a lot of stress.

    5. RE. Anonymous21 August 2012 17:20

      Sorry, I've just spotted the article about the 12 doctors was published on August 13th - just aw it on the mE Association website today. http://www.guardian.co.uk/politics/2011/aug/13/atos-doctors-improper-conduct-disability?fb=native&CMP=FBCNETTXT9038

      Interestingly the Guardian have stopped comments on this. They say comments were opened by mistake!!!
      You really have to wonder about the credibility of this newspaper rag

  4. you do the very finest of jobs sue and are a credit to all who know you a true leader of which this country has not seen in years and unlikely never to see again as you need all of the qualities that you have to be a great leader and out of all the mp's your head and shoulder above them and by a good margin

    the younger generation going into politics like my daughter will find it very difficult to match your expertise in the helping of the sick and disabled

    The politicians know the mental harm they are causing the sick and disabled and the added stress that they cause them but like i have said and as any Forensic psychiatrist will tell you those in power love to destroy the lives of others who they feel week and inferior and as history has shown worldwide this has always been the case and the conservative are no different and will stab you in the back until you die at every opportunity whilst claiming to be helping you with a smile on their face

    1. Elected leader? Generally accepted leader? self appointed leader. Hang on there Nick.

    2. Anonymous if i had my time again i would have gone into politics make no mistake about it and if i say so myself yes i can lead the public have nothing to fear from me and i have a very long worldwide list of good references that i accumulated both in and out of the bank over the years and on paper it's looks good.

      I have met a few like myself over the years we are about but in very few numbers and i guess so few that we have never made it into politics which is a very easy undertaking all you need is to have the skills of being a good honest neighbour and am sure many of us here fit that bill nicely

      The politicians in the early seventies by and large were decent and none of them would have stooped as low as they do today had they done so then as i say i would have gone into politics instead of the bank of england.

      Regretfully i made a bad choice and now have to live with that fact for the rest of my life.

      i have as my family always put the needs of others before myself and to me the sick and disabled are the very best and always have been so to have some politicians out to cut their life short causes me not only great concern but great pain not only in my heart but my head as i cant believe that the country i live in wonts to revert the lives of the sick and disabled back to a time of Oliver twist and the slave trade that the uk was famous for hundreds of years ago

  5. Do you have an advocate to attend with you, karensky? If not & you'd like one, I'm sure one of the Spartaci will help you with some suggestions & support/'coaching' ahead of the interview.

    Stay strong! Graeme :-)

    PS don't forget to take a dictafone!

  6. Great blog hen I would also and have worked with anyone willing to listen and change things for my peers, we are all different and do things in different ways thats's what makes us who we are. This is no time to fight over who said what when or who done what when we should be all working together amazing how one journo @PatrickButler cut short @JaneYoung quote has done xx keep up the good work hen HUGE respect x my bit about the gaurdian on facebook was not directed at you by the way I was a bit shocked not so long ago at Sonia Poulton on another DPAC website offering to speak for us although I like her and she can be good Ally she is not one of us and there is #NothingAboutUsWithoutUs hen so @BendyGirl was also right to say it had to be someone with a disability as she picked up on it too x even though i have said that Labour sold us down the river they DID but I am currently working with people in all parties behind the scenes to get things changed and will keep bending anyone's ear that will listen or change their minds. had to sit in a lot of meetings hen and smile harder even when I wanted to scream but in some ways they have paid off I would do anything to help my peers. Hope this clears things up a wee bit hen x hope our @bendygirl and @spooniedoc are feeling bit better soon we all have bad days but have to remain #Focused and #positive on our mission to make the world a better place for all as it's us who are #Allinittogether #Loveyehtobitshen

    1. Here, here, I can't think of a better way to put it.

  7. **I want WCAs scrapped and I do not want PIP to be introduced**

    Hear Hear!
    YOu are an amazing light in this dark dark country at this moment - You are such an inspiration I am just in awe of you

    You rock!

  8. Excellent blog for an excellent campaigner who with all the campaigners keep us going during these dreadful times. A big thanks to everyone for their efforts. And make no mistake the public are just beginning to see through the lies.

  9. just a point Sue, its 'boycott workfare' not 'boycott welfare reform'

    all the various groups are doing great work, but i do think none of them should get to close to political parties, etc..

    Look at what has happened to the charities, they are largely emasculated/co-opted...

    take care and keep up the good work(when you can!)

  10. Words on a page have changed the world in the past and will change the world in the future. Don't sell yourself short.

    I hope the hospital trip goes ok xxx

  11. Your words almost brought me to tears . It's heart-warming that all the different groups are pulling together for the same aim but at the same time is's disgusting that sick and disabled people are being driven to have to do this- and in the process are making themselves ill.

    For myself I will keep on fighting to get rid of both the WCA and this unelected government and to try to prevent the PIP ever happening.

    Never give up, never give in .


  12. I am very happy to take a more active role now I am up to it
    and eternally grateful to those who have fought for and inspired me through my struggles with disability and the state

  13. http://www.dpac.uk.net/2012/08/latest-information-on-atos-games-week/

    magda, you(and others) may be interested in this, it is happening across the UK

  14. Well done Sue:)spot on

  15. Darn right! Love what you are doing and am behind you all the way cheering you on. Like you I can only do so much because of my own health, but I feel another letter coming on once my brain is functioning a bit better again, xxx
    In addition to Pat's petition which ends in November, (I like the idea of a link in the sidebar, I'll add it to my sidebar, too), have you seen this new one? I don't know when it runs until, but here's the link, x

  16. http://you.38degrees.org.uk/petitions/stop-the-welfare-reform-death-scandal-3?time=1345400586

  17. I have just found you from Patrick Butler's article on social media and disability campaigns in the Guardian yesterday.

    Very well done - but as an interested, disabled and medically qualified person, how did I and doubtless thousands of others not hear about you sooner? Pause...

    Would be happy to help if you need me, though am currently based in bed in front of a screen.

    Would also point out my blog that might have some useful tips for some, eg on home helps, comfort in bed, and the WCA assessment form. Beware of this - there is a way to fill it in - never disdain the help of an experienced Age UK worker, for example.

    Blog is at SurvivinghomecareUK@blogspot.com

    1. Hi, just looked at your blog, I can't the info on the WCA form, could you point me to it?


    2. Hi, yes, it's in the "Advice, support and legal challenges" post, and the interview/examination I deal with in "Britain on the sick". Have two e-friends going through this now, and certainly Age UK came up trumps in helping to fill out the form.

  18. Brilliantly put Sue and thanks for some directional hints. I to will fight to my last breath if I have to, so just one person doesn't have to go through what I have over the last 5 years.

  19. I am so in awe and so grateful to you for your work. My son and I are both severely ill. I wrote an article about the lies the A*** doctor reported about what happened and what we said during his visit. We had a specialist nurse with us as witness but no-one would listen to us. Dwp stretched it out for a year then said we had run out of time and couldn't appeal anymore. I have tried so hard to get a newspaper to read my article and investigate but none of them will do it. Don't even bother to reply. My son's new forms will arrive soon and as they are retesting the "indefinites" mine will follow. I've been feeling suicidal at the thought but know that's what this government want - to get rid of us all.

    1. Take care andrea we are all behind you and the likes of sue will get at some point to the justice part of the welfare reform bill

      Most mp's read this blog that i do know as their secretaries tell me they do the mp's themselves thou say they have never heard of it but i know different so what is that telling you ?

      they know that at some point that the deaths and misery that have gone beforehand will end up in a court of law and the main question will be "did you know as a mp of this blog " to which they will try to answer as no

      It is one of many important questions that will be asked at some point as the deaths and misery caused by the DWP and ATOS have from day one been highlighted here so for a mp to tell a judge that they did not know of what was going on behind the scenes by the DWP and ATOS would be most odd as the sick and disabled do know of this blog

      I can assure you no judge would stand for that nonsense by a mp or newspaper group even the the bbc read this blog very few mp's newspapers groups and the bbc if any do not know of this blog and it's about time these mp's got their act together and brought this government down which I'm sure will happen at some point so Andrea hang in their and remain positive if you can we are all supporting you

  20. If you get to a table with Iain Duncan Smith, could you please stick a fork in his head?

    Without the Social media, especially after the Spartacus Report we might and probably would have been much worse off.

    When I can go to twitter, or here, or The Black triangle, or the Guardian, I can see constant challenges to the Government, The DWP, and Atos, and that at least gives me a sense of comfort.

    And the level of intelligence and expertise with which campaigners challenge the Government is just fantastic.

    I would like to see one enormous campaign though with everyone together under the one banner. It's good to see people coming at the Government from all directions, but if it was under the one banner it might hold more weight.

  21. Amonrosier -
    Thank you! "If you get to a table with Iain Duncan Smith, could you please stick a fork in his head?" You made what has been a very crap day bearable by making me laugh out loud! : )

    1. ...... and saw his legs off!!

  22. Seen this?


  23. it's hard to believe that with all the millions of people who could have been prime minister we end up as always with those bad apples at the bottom of the barrel and to think that my own conservative mp always keeps his mouth shut to keep his job
    hopefully one day someone like him will make a breakthrough and speak up but until then we'll just have to dream on

  24. With over 15 million subscribers worldwide I have started the following petition on www.avaaz.org ..it may not be perfect..but with limited characters available for detail, its the best I could do:-) I hope some of you can see fit to sign and get this thing "viral" by sharing as soon as possible before anyone 'stifles' the dissent felt by us all through government intervention and manipulation just like the MOJ video! ..Please feel free to share (hope you don't mind me using your site Sue...(sowwy)


  25. Hey Sue, Congratulations! Just discovered yours is the 15th Top Political Blog on


    (Can I have your autograph hon? :-)

  26. Labour is not interested in dealing with the current plight of disabled people. Despite the rhetoric of some on the left they are in a small minority. Labour's roots in working class struggle have gone, to be replaced by right wing and struggle for MPs only!!

    Labour brought in the changes to welfare. The WCA is their baby. Ann Begg is not interested in change, the DWP committee are only interested in managing the process not changing it! I don't need to be told by anyone what labour have done - these days they only try to look after themselves. Claims that they would have 'done things differently' are spurious indeed.

    The only option for disabled people is to fight the bastards themselves. Neither Labour nor the unions are interested. The silence is deafening...........

  27. Sue, you pulled me up at my lowest point, you are not 'just' anything, you are amazing.