Tuesday, 2 June 2015

An Unfond Farewell to Disability Activism

Almost five years ago I had to give up the career that I loved. It was a devastating and life changing time. It provoked a period of deep depression for the first time in my life, something no other difficult event had succeeded in doing.

After recovering from this I observed that the government was threatening serious cuts to the very support which had enabled me to embark on my career in the first place. I hated the idea that current young disabled people would be denied the opportunities I had enjoyed and so I became more involved in disability activism. It gave me a sense of purpose and I felt I was doing something worthwhile which would help others.

This took off in a big way in January 2012 when I researched and wrote what became known as the Spartacus Report. While others helped and others were in charge of organising the superb campaign, I was the main author.
This report clearly showed for the first time, with the government's own data, that they were lying about both the need and disabled people's support for reform to DLA. This report was on the whole met with great support by disabled people, bringing many people together on social media. It was used to try to influence voting on the welfare reform act and eventually provoked much media interest after surprise government defeats in the House of Lords.

After a long period of recovery I continued campaigning on the issues I cared most about, ie the enabling benefits like DLA, DSA and social care. While I would have liked to campaign about everything my health no longer permitted it and my involvement has got less and less each year as my illness worsens.
I tried to prevent a cap on community social care being implemented in Worcestershire, was very involved in fighting the creation and evolution of PIP, particularly the 20 metre rule, and recently helped combat plans to water down DSA.
Among all this I helped and supported fellow disabled people and called out politicians whenever I caught them lying in the press, for instance about disability benefits being exempt from benefit uprating and freeze.

Today though all this comes to an abrupt end. I discover I am not wanted. Why? I am a "Sparty", and a "traitor".
Why again? Sue Marsh, who was the most prominent "member" of Spartacus decided in January to go and work for Maximus, the company taking over the controversial WCA "fit for work"assessments from the infamous ATOS.
Apparently this makes me a traitor too and makes all my previous work invalid, no matter that I have not worked with Sue for a couple of years (not that it should matter anyway).

How did I discover this? Just before the election, fed up of the infighting between disabled groups and people, I wrote a post calling for for union. Some decided to do just that and create a "union" or similar organisation. I eagerly wanted to help, health permitting, along with others who had been involved with various reports for Spartacus in the past.
Sadly things rapidly descended into conspiracy theories, with "Sparties" supposedly trying to take over and get their "leader" (huh?!) in power. Long discussions were also had over which disabled people should NOT be allowed to join. So much for unity.

What was said was nasty.
I no longer feel welcome and don't think I ever will again.
I fail to understand how anyone can have an issue with the work I have done (other than fundamental differences of opinion).
I fail to understand how work which was hailed as good at the time becomes bad simply because someone I worked with 3 years ago has done something they disapprove of.
I fail to understand how that makes me guilty and unwelcome.

I have been attacked in the past before. Ironically it has been on the one hand for not doing more about ESA and the WCA and on the other for not caring about inclusion, when in fact most of my campaigning surrounds "enabling" support.
People have always jumped to conclusions and made assumptions.
So maybe I shouldn't be surprised.
Disability activism has always been made harder by "fellow" disabled people than by the people we are supposed to be "fighting".

So now I am stopping. I don't have the physical strength to put up with this.
I feel like I did when I lost my career all over again.
I thought I had found something which helped replace that but it has been snatched away from me. I didn't think I would feel this bad ever again.
And the sad thing is that some people reading this are probably rejoicing.
How will we ever unite when this is the case? I wish all you disability campaigners luck but I don't hold out much hope.


  1. I'm so sorry this has happened to you. Personally, I thought your call to union was excellent, but the idea of an all-encompassing union seemed doomed at this time, because of these conflicts and others.

    However, having observed events and the colossal amount of work you've done in the last five years, I cannot fathom how anyone could think ill of, or mistrust you. For various reasons, I had reservations about what the Spartacus Report might be like, right up until I saw that you were doing most of the work. I'm sure there's lots of things you and I might not wholeheartedly agree on, but I've never had any doubt that you were on the side of good, on the side of disability equality.

    I really hope that you might be in a position to take a break now, and reconsider in a while, when there might be other, better projects along the line. If not, then I hope that, in time, you'll find somewhere else to place your limited energy and considerable talents.

    1. Thank you. I knew the ideal of a union was ambitious but didn't realise quite how big the rifts were, nor how unnecessarily angry some people appear to be.
      And no, I'm sure we wouldn't agree on everything, but this can be a good thing! My thoughts and opinions have changed over time as I discuss things with people and take onboard new ideas and opinions. In other cases maybe I've been the one to influence other people's ideas.
      I just don't see why it has to lead to conflict as long as we do have the same overall goals. It is a matter of mutual respect and communication.
      I don't yet know what i am going to do but am trying not to think about it overly much. I've been very sick this year anyway and only just started to recover. I will concentrate on that for now.

    2. Your very first priority is to keep as well as you can. I hope that your recovery goes well but you have to take care of yourself and let things heal on the inside and outside. Take care xx

  2. This really saddens me, but also makes me very angry. I believe the people who want to exclude you (and potentially me) and others from any future union are but a handful - a loud, aggressive and resentful handful. Most disabled people would be horrified to learn that you have felt bullied out of campaigning and activism and would have nothing but support and appreciation for all your work. Social media can be a great organising force but it can also amplify the divisive voices that shout the loudest. I don't think we should let them win out.

    1. You may be right but I am just not well enough any more to both campaign and take on fights from within. It was hard enough just trying to do a tiny bit of campaigning.
      This year had been terrible health wise anyway. I am just going to concentrate on recovering as much as is going to be possible.

    2. I totally understand. Your campaigning work is an incredible achievement as it is and I hope you can put this recent conflict aside and take pride and satisfaction from it as you rest xx

  3. I think what you say is absolutely right.

    I have thought for a long time that there are people out there who want to be 'in charge', some have names like Cameron or Duncan-Smith, others run groups meant to speak for 'the disabled'. I also, in a non-paranoid way, don't always trust some who may or may not be there just to be contentious. In my more paranoid moments, I do wonder about who some 'campaigners' really support :)

    Sadly, many disabled people aren't represented in and are wary of some of these groups. They may disagree with the meaning of the word 'protest' or 'demonstration' or, they quite simply don't have energy to spare to take an active part in campaigns.

    I thought that there might be a way to 'unify' the 'groups' and individuals, but also, watching quietly, I found that discussions quickly broke down into... I'm not going to bother to continue, because you have said it anyway.

    It was through 'Spartacus' people, that my bedroom tax case first got noticed, for which I am always grateful. I just wish that people could realise we are truly all in this together and without working together, we will be beaten.

    While you rest, have a read of the Shannara books by Terry Brooks. They'll keep you occupied for a while if you like that sort of LOTR-type stuff!

    Take care of yourself.

    1. Thank you. I will. And I will have a look at those books. I've been a big LOTR since childhood!

  4. To render an opposition powerless first discredit those who can be discredited, then buy off those who cannot be discredited.
    Ms Marsh was bought as her following was such that no one would believe an attempt to discredit her.
    You have been taken down by people discrediting you.
    Not all those who raised objections and brought about infighting were acting on genuine belief, but were acting on behalf of those who wished to stop opposition being effective.
    Its one of the oldest tricks in the book.
    Please take some time to reconsider leaving activism.
    Your work was highly effective, you would not have been attacked if it wasn't.

    1. You may be right but I will repeat what i wrote in another reply.
      I am just not well enough any more to both campaign and take on fights from within. It was hard enough just trying to do a tiny bit of campaigning.
      This year had been terrible health wise anyway. I am just going to concentrate on recovering as much as is probably going to be possible.

  5. I'm very sad to see this. It's a real loss and a real worry. You've been so great and have contributed an awful lot, I'm sorry people are being so cruel. I haven't the brain spoons to expand, but please, if there's anything I can do drop me a DM on twitter (becca_boot) or I can give you my email address.

    1. Thank you for your support and for spending the energy to come here and comment. It means a lot.

  6. Illness has meant I haven't been able to be as involved as I'd like. Yours reads like a considered voice- we need them! Please consider withdrawing for a while and see how you feel afterwards. I wish you all the best.

    1. Thank you. I don't think I have the health and energy to both campaign and face fights from within. It has been a difficult year so far though, so for now i willl concentrate on recovery.

  7. I have believed in you and followed your posts, reports, advice etc. I still believe in you and hope that after a rest from all the anguish that you have been through, that you come back and help people again.
    These people who "don't want you" do not speak for the majority and never will. They will find that its them that are going to lose followers - there are not that many we can go to for advice, help or even just reading about what has happened, what is going to happen etc. This is the reason that I would rather listen to you and trust you rather than them.
    I hope you don't go down that depression road again, I am there and have been for a while - I just hope that you can take some time away and come back knowing that you have been missed - greatly.

    1. Thank you. I can't see myself coming back, in the form of activism any time soon. I will try to blog if I am able to. I will see how that goes. This year has been pretty rubbish so far, but is starting to look up a bit. I will now concentrate on recovering as much as will be possible.
      thank you for your trust and support. It does mean a lot.

  8. I have been reading various postings lately and it saddens me some of the stuff that has been said.
    I thank you for all the work you have done over the years for disabled and chronically sick spoonies.
    Time will tell how these proposed 'unions' will pan out........
    I echo Paul, Catherine and Becca's thoughts.
    Take care and sending you all my best wishes

    1. Thank you. I appreciate it more than you know.

  9. (((((( gently hugs )))))) people like me need people like you. I wish things had been so different, that you got more credit and love for what you have done. I say love not as a soppy thing or as something I think yoru ego needs, but to describe the care and consideration you deserve. As an outsider I never really got the Sparti behind the scenes stuff. It is all history now http://en.wikipedia.org/wiki/Responsible_Reform and it mattered. Over on OT we tend to help each other and newbies a little bit at a time and sometimes a lot, I hope you can come over and sit a while amongst old friends and acquaintances. Take it easy :-)

    1. Thanks.
      I have no idea where I'm going from here as such. It has been a hellish year so far and I've been so sick that I've been offline for most of it. I was only just starting to get going again.
      For now I think I need to give myself some time to continue that recovery and see how much better I'm actually going to get.

  10. To many egos and insufficient humility - this occurs in every sphere whether social, familial, business, work, charitable, etc. Please do not walk away for good. Rest. Ponder. Theorise. Dream. And come back invigorated. I do what I do even if it only helps one or two folk or no-one at all. I do what I do because I have to . I suspect you do too. Follow your path. Be true to yourself. %)))

    1. Thank you. I know what you mean but just can't see myself coming back right now. Maybe I'll be proved wrong!
      In the mean time I need to give myself time and space to recover. It has been a bad year physically so far.

  11. Not aware of all the ins & outs, but very sorry you have been brought low by this

  12. Im so sorry Sarah, I feel like this is my fault… Im so angry with those who are ignorant of your contribution as part of the network and in your own right. To those who accused you of being in the 'marsh cult' you obviously know absolutely nothing about how the network worked, nor who worked in it… Those that talked about the 'Spartacus element' as if it was something dodgy criminal or subversive, will turn round to find we have all quit and left you with the groups that are more interested in their own advancement than in changing laws for the better of all… and why because someone we knew years ago took a job three years after we worked with them. Does this mean that none will ever be able to start a national organisation because one of us x Spartacus members may want to join at some point? Well, I declare that if a national organisation for disabled people where to ever come about in the future I would defiantly want to join!… Have a think about how crippling this ridiculous attitude towards those that worked bloody hard making themselves sicker to try to prevent the worst excesses of welfare reform is to all our potential futures? If this is the way you treat fellow people with disabilities after this kind of contribution then I feel much the same as you Sarah. Maybe I should quit trying to get IDS held to account for his contribution to the evil that prevails, and the deaths is has caused. However I am aware that these small organisations and very few individuals that are so spiteful are in the minority and actually have no more right to speak for everyone than anyone else. Im sure you have as many people that think we need you as those that are ignorant and I believe your contributions will be missed and I hope are not the last because small minded people exist across the spectrum and they do not deserve to win. Bullies are bullies wether they are disabled or not… big hugs huni… I'm so sorry… Dxxx

    1. Please don't apologise. This isn't your fault and you unfairly got caught up in it too, just as much as me. It is a sad situation but it is what it is. I just am not well enough to deal with both that and campaigning. I'm just going to out my health first for a bit and then try to find something else to turn my attentions to.

  13. I'm so sorry, and so grateful for all you have done. I won't forget you, and send you love.

    1. Thank you so much for coming and telling me this.

  14. I still want to push on and try to organise. I won't try to persuade you to be involved, or to help - but I wanted to say that I don't think the cause is dead.

    All I would try to persuade you to do right now is look after yourself as best you can, and if that means stepping back, that's what it means. Keep safe.

    1. Sam, I sincerely hope you do succeed. I hope to be proved wrong. I just can't be involved any longer. I don't have the strength for it.
      I will indeed step back and concentrate on my current recovery and see where that takes me. Best of luck to you.

  15. Sarah I echo Sam's comment. I'm personally sickened by the amount of bullying that goes on (particularly on Facebook it seems) from people who purport to be members of the disabled community, but here again I echo D's comment I feel I cannot sit back and do nothing. Therefore I will do all I can to support some sort of unifying groups and bullies be damned.
    I sincerely hope this will take off and that in the future you will able to rejoin us when this proves to be a supportive project you feel you can benefit from as well as add your wealth of knowledge to.
    All very best - see you around in the fantasy book groups I hope xxx

    1. Thank you. And I really do wish you the best of luck. I would love to see things work out.

  16. I am so sorry you've been made to feel like this. I haven't been around because I've been a bit too poorly myself to take part in anything, so I don't have a clue what has gone on. I'm very sad for you, but also for the rest of us, because it seems like the most natural thing would be to build on a success, and the Spartacus Report was a success, along with all those (like your good self) who were involved in creating it.

    I hope that you will be able to spend some time concentrating on your own health, and that you will feel better soon.

    1. Thank you. I will take some time now to concentrate on recovery. Who knows, maybe the weather will even improve at the same time and I will be able to leave my flat!

  17. I'm not 'around' the disability scene much due to very poor health, so don't have the energy to join disability groups so a bit out of the loop. But I just wanted to thank you personally for all the work you have done. The Spartacus report was excellent, a ray of hope to so many of us who felt overwhelmed by the oppression of lies about us coming from various sources.
    Also your work and warnings on DSA - such an important issue.
    I am sorry to hear you've been bullied. I hate bullying in the disabled community. We are all on the same side (or should be) - we have enemies, but they should not be amongst others who are facing the same challenges.
    Rest and recouperate as the doctor would say :-) I wish you all the best for whatever you decide to do in the future, and hope you will keep blogging.

    1. Thank you. And i'm so glad to hear that my work made a difference.
      I will try to keep blogging if able to. It is always sporadic to say the least!

  18. Like others, I wish to convey my sympathies and stress that the most important thing here is your health. You need to look after yourself first.

    We are in an interesting time currently. There is a much wider spectrum of disability campaigning than there was in the 70s and 80s. With the collapse of the political consensus reached in the 90s which started almost a decade ago and the emergence of different disabled voices such as learning difficulties (e.g. People First) and the long-term sick (which had a significant voice in the Spartacus movement), the space known as 'disability rights' has become more complex and contested. What you have described is a consequence of that I feel.

    Yet I view this contested space as a good thing overall whilst not condoning the behaviour that you have experienced. The gains made in the 80s and 90s were shallow and easily overwhelmed by a hardening of political attitudes towards the sick and disabled. So wherever we relate to disability, this is quite the 'wicked problem' and will generate heat amongst otherwise well-meaning people. Obviously there are exceptions who generate heat because its their personality but that is a minority.

    My personal take on the Spartacus Report was that it was good on evidence and identifying problems with the benefit and support systems but weak on resolving those problems. In particular, it didn't address the complexity of disability as opposed to sickness within society rigorously enough which left it open to criticism of undermining disabled people participation in society. That may feel unfair but I can see where those criticism come from. It is a wicked problem.

    This isn't an easy time as there are a diverse range of voices wanting to be heard. So the idea of a union is interesting but the first principles have to be well thought through. I'll look at it with interest.

    So look after yourself first and give yourself the space and time you need. I hope in the future that you'll feel able to participate again.

    1. Thank you.
      I sometimes think people overestimate what the Spartacus Report set out to do. It was a surprise as to how big an impact it had and suddenly people turned to us, the authors and organisers, asking "what next?"
      There wasn't a next as far as I had been concerned, yet suddenly people thought I was somehow capable of solving one of today's big issues facing disabled people. I was no one special, had no special resources. It was just me, a few other similar disabled and often very sick people and our laptops. I still don't think everyone realises that.
      Our only goal at the time was to expose with hard evidence that the government was lying through its teeth. It may be hard to remember now, but back then no one knew. The media, the statistics office, select committees, other MPs, none of them had yet questioned the government on any of their blatantly false or misleading press releases or statistics. The Spartacus Report was a (fairly dry and boring when you come to it!) systematic taking apart of one of their official briefings. It wasn't in any way supposed to offer solutions. It only wanted to shine a light on the problem. And it did.
      The hard work of resolving the issues needed to come after that. Unfortunately it still does. Right now people are still focussing more on their differences than on their common goals. As someone with both visible and invisible impairments, who has both worked and is now unable to work, I find it incredibly frustrating.

    2. Spoonydoc, I was so sad to read of your experiences. I've been reading your blog for a while, and I'm of the view that you have only ever tried to be balanced and fair. Plus you have made a huge contribution to campaigning over the last few years.

      It makes me so sad also that the entire disability rights cause could be lost just because of people deciding that they don't like some other people.

      I wholeheartedly agree that health comes first; that is why I haven't tried to get involved in too much up to now. I hope that some time off is useful and restorative for you.

      Lost Transport - 'So the idea of a union is interesting but the first principles have to be well thought through.' I think the door is currently wide open for anyone to contribute their ideas. You have the opportunity to help shape this organisation if you wish. I think that is something else that is currently not being understood by many.

      The union idea has masses of potential but will only work if we have enough people to do all the work that it's intended to do.

    3. Thank you Mel. Yes I do try to be fair and am delighted if that is how I have come across. Maybe that hasn't been to everone's taste.
      Yet I still believe quite firmly that we need both approaches: a level headed fact finding one, and a perhaps more passionate, galvanising one. Both have their place and their strengths and weaknesses.

  19. I am so very sad to read this. I have read your blog for a long time and thought your work on Spartacus was exemplary. Your analysis and compassion shine bright and why anyone would not want your input simply astounds me. You will be sorely missed and those that have driven you to this should be ashamed. I wish you well and hope your health improves.

    1. Thank you for you4 lovely comments. They raise my spirits. I am very sad it has come to this, but just don't want to put up with this any more.

  20. Wake Up people! this is how they roll, if they cant buy you, they break you! wishing you well pet x

  21. Thank you for your work. I don't know much about the politics of disability campaigning, but the quality of the spartacus report has inspired me to get involved independently, researching the details of various boring reports and compiling results. The truth matters, and drawing attention to important facts is always helpful regardless of the politics. I think that you've helped lay a foundation for stronger disability activism and am keen to see you continue researching and writing, even if you detach yourself from the 'movement'.

    1. Thank you, and it is so great to hear that someone has become involved as a result of my work. I couldn't possibly wish for more. I wish you the best of luck in your endeavours.

  22. You did great work and it must have been shock to see it take off so fast.
    I tweeted Stephen fry and it got many re tweeted
    he is a smart man so you should praise yr self that he read and took on yr cause seeing yr truth

    I too took time out as health got much worse.
    It takes a lot out of you campaigning when very ill.

    Its very hurtful when people turn on you and drop you when you've paid such a price to help others.

    I think the govt has such power in press it was always going to be hard to get the message to public.

    Yr health is most important of all
    so enjoy summer as much as you can and recover as much as you can

    pay into the bank of you.
    Others have maybe not realised how much they have taken from you.

    Disabled by birth or accident or by health conditions is really to me the same

    my friend who had accident lost knee cannot see me as disabled. Yet he looked after me and could do much more than I functionally.
    Both in activity mobility and cognitive function.

    I don't know what to think about sue
    it feels like a real betrayal. Surely she could have worked for another company not the enemy.

    Though I've not been following to be honest.

    You are not responsible for her actions
    The general public will soon begin to see and feel the nhs cuts and realise the truth.

    They will end up more and more on benefits as health care needs are not met

    I do hope once the dust settles. You will one day find a new pathway and find some direction that will give you happiness

    until then thank you for yr hard work.

    What you created was amazing.

    Just sit back and think what you created.

    People are angry at the govt and projecting at you their inner anger and frustrations.

    Put yr self first and yr healthfirst and take a well deserved rest.

    Maybe sue will not find the job works for her and become a whistle blower. Who knows.

    But we do know, you had nothing. But the very brilliant report and should be proud of the job you did.

    Bullies. Only get satisfaction from response so to just walk away and Put yr self first is exactly the right choice.
    You have helped to many now time to look after you
    you made history.

    1. Thank you for your kind words. The support I have had over the past few days has been extremely helpful. I feel I can now step back with far fewer regrets.

  23. Can anyone join the self-pity party? To brand those who disagree with you and are insulted by connections to the money-mad-Marsh as bullies and trolls is incredibly childish.

    FTR as I've said before, a union has been brought up on many occasions and turned down every time, the only ones who wanted it was the people that came up with the "original" idea. And a union this time that wants "inclusion" but excluded carers? Yeah that idea's gonna work

    1. I respect anyone's opinion. Not everyone will agree with the idea of a union nor want to join one. However a significant number of people do or they wouldn't be trying to make it happen.
      As for carers, from what I gathered from discussions, many felt they should be associate members due to our shared concerns and goals.
      Finally, if you really do feel that personal insults and ostracisation is acceptable behaviour, in particular in response to something someone ELSE did, then there is nothing more I can say. "Childish" doesn't even begin to cover it.

  24. That's harsh
    we too were part of the movement with marsh.
    Does that mean we are all to be branded with her by association?

    You should consider that people need to put their health first sometimes

    the anger and passion sometimes gets directed at the wrong people

    to kick someone when they are in deteriorating health is what we were fighting against.

    There would have been no massive movement without the report.

    Perhaps its an idea before its time and people are just not ready to think outside the box

    there could be two one for disabled and linked one for carers.

    Do not cause abuse to someone who tried their very best, because of someone else's actions.

    Channel yr anger into a positive way forward.

  25. Very sorry to hear about this. The disability movement needs people like you. A great shame... though I'm also not particularly surprised (at the behaviour of some people and groups - which is not unprecedented).