Saturday 3 May 2014

A last plea for a unified Shadow UNCRPD report

Life is very strange. Being a campaigner stranger still.

I've said before that you don't choose to be a campaigner, it chooses you. It always starts with something you desperately want to be changed.

You do whatever you feel you can to change the injustices you perceive and it's hard not to frame your struggle as a fight against a common enemy or ideology.

Campaigning is the result of failure. It is born from despair, it shows that the common bonds of democracy have broken down somewhere. Something in a system has ceased to function in a way that it should.

This is the case with "welfare reform" and the other structures that involve the rights of people living with impairments or long term health conditions - not just under this coalition government, but long before. Decades of erosion and perhaps corruption, false premises and unsound policies pushed sick and disabled people to the brink of disaster. Whether that disaster was allowed to fully unfold unchecked, relied on the almost incomprehensible efforts of a few disparate people.

Not groups. I believe that to be a false construct, like religions or masonic lodges. Coming together is important - vital even if campaigns are to succeed. But the minute an identity becomes more important than the cause, that precious energy we so desperately need to change the course of our histories starts to seep away, like sand through an hourglass.

A campaign needs many different voices to succeed. It needs to show that different concerns across a spectrum of issues and opinions are represented. It needs to show an "electorate" of support that encompasses as many of the people we hope to represent as possible. It cannot ever speak with one voice - that is fascism, dictatorship. It should never seek to.

Within the sick and disabled community, we have radical voices full of fire and anger. That is good. It shows how very painful and undemocratic we believe these policies to be. How damaging and oppressive. We have political voices like mine, who try to bring the arguments into the heart of government and opposition in a language and style that politicians and their court can accept and engage with.

We have academic voices who are able to put well researched, and persuasive arguments for change. We have lone warriors, unflinchingly challenging individual details of reform to the very highest courts, as with Bedroom Tax or the discrimination against those with mental health conditions. We have renegades who hold a different view - this is good too, they challenge us and stop us from making lazy assumptions. from mirroring those we oppose.

We have opposition allies sometimes willing to suppoprt us and that is vital. If we only ever preach to the converted we will never really achieve change. We have large, well financed organisations with the kind of profile we neither have nor desire who can produce and fund work and awareness we never could.

We have religious leaders from every spiritual corner who support and encourage some to go on and do more. They support us publicly and privately. We have legal experts coming together in variety so great that there is now almost no case we cannot bring, no just cause we have to leave unsupported.

We have politicians - some we even dislike and feel betrayed by, who have done small things to help us. We often wish they were everything - one big bang of regret that would acknowledge our suffering and admit past mistakes. We never get that. We get baby steps, daily inching closer to a better way.

We have journalists who defend us and give us a wider platform

But most of all, we have thousands and thousands and thousands of willing foot soldiers and injured lives willing us and supporting us and carrying us on. Without them, we have nothing at all. Together we have millions.

There are 11 million sick or disabled people in the UK - around 5 million or so who need to claim some form of support from their peers to compete on a level playing field.

The only thing that will ever make governments pause, allow a shiver of fear to penetrate their blind and zealous determination is if we can show that all of those people are represented by at least one of us. If not all 5 million, or 11, then as many as we can possibly reach.

Around 50,000 individual people read my blog every month. They tend to be the political think tankery geeks, academics, researchers and warriors that are either interested in the dry nuts and bolts of political reform and the mechanisms we need to use to have a hope of making it work for us. Or those interested in an individual struggle as story teller.

The "Reclaiming our Futures" Alliance includes the Alliance for Inclusive Education, the British Deaf Association, Disabled People Against Cuts, Equal Lives, Equalities National Council, Inclusion London, Shaping Our Lives, Sisters of Frida and the TUC. a rich alliance of user led disabled people's organisations and trade unions that together reach some 2 million sick and disabled people and their support networks.

The UK charities that represent sick and disabled people have millions of members when they all come together. The Disability Benefits Consortium (DBC) is a national coalition of over 50 different charities and other organisations committed to working towards a fair benefits system.

The UK Disabled People's Council and Disability Rights UK exist to promote the rights of sick and disabled people, illustrating where they are being undermined.

The Spartacus Network have challenged existing ideology and ensured that we have a political voice.

Black Triangle ensured that the mighty BMA and the RCGPs added emphatic support from every corner of the medical establishment for our medical claims. They bought a professional credibility. WOW petition showed that over 100,000 people cared enough to sign a petition supporting us.

There are journalists at every main outlet now who are prepared to report on our issues, making sure that millions more get to hear and see our concerns.

But thinking that all of those voices need to unify and conform to one opinion is to miss the absolute point of campaigning. We can never possibly right so many wrongs by insisting that thousands of people representing millions of individuals agree on everything. We're not meant to.

Those who are able and willing to physically picket Atos offices or government departments give our campaign visibility in a way that much of the public can easily recognise and understand. It is vital and no campaign can ever win without it.

Those who are very academic often produce arguments I struggle to follow. I have to trust that I understand enough of what they say to know that they are brilliant and balanced and do their very best for all of us.

Those with expertise in politics need to be given the space and trust to do what they do best in an often frustrating and unfathomable world.

Those who speak for a broad coalition of disabled people, actually making a difference on the ground, every day to the lives of people living with disabilities bring a network of reality, of co-production that no campaign can claim any credibility without.

Those who care for us tirelessly and for little or no financial reward deserve an equal voice, represented by groups such as Carers UK and Carer Watch and many others.

But I believe and have always believed that there are a few unwritten rules. If any one of the elements forget them, the campaign will be the weaker for it.

- You never criticise other campaigners unless there is absolutely no other alternative. It's vital that the campaign is ALWAYS more important than the campaigners. If we ever forget, even for one moment, we become led by ego, not cause, exactly like those we aim to oppose.

- You are always inclusive. I believe you have to try to find common ground with other campaigners. It isn't for me to decide which ones I like or which ones suit me and what I want to do. It's my job to listen to as many of those voices together as I possibly can. To incorporate them in how I understand the broad tapestry of the campaign.

- You never, ever close a door. However unpalatable the ally, however corrupt we believe the institutions we seek to change, the day we refuse to engage with anyone at all is the day we loose.

- And the final rule for me is that at times - in fact more often than you will ever know - I have to compromise with people I dislike, work with people I don't respect and charm people I find charmless. How could it be otherwise? How can you change something you find repellant unless you engage with it?

If there ever comes a day when something so important comes along, that it would be negligent and stupid for us all to abandon the strength and solidarity we've achieved so far to ego, we would show ourselves to be unable to put the campaign before ourselves.

Many, many campaigns have fallen that way. The odds of winning a campaign must surely be dire. Remember, all of those people and personalities and strategies I listed above have to always trust each other enough to remember that ultimately, we all want the same thing. CEOs have to work with anarchists, politicians have to work with priests, legal experts must work with those willing to break the law for a greater good.

The odds of all those professions and opinions being able to maintain their broad accord despite ego, gets harder ever day a campaign continues. After many years, those early, heady days of belief and inspiration turn first to despair, then back to determination and every time a little optimism and naivety seeps away. Where at first, tens of thousands believed that if millions came together, change would be easy, most are long gone, replaced by new waves again and again.

Or we changed and grew and hardened into people who understood the battle we were actually engaged in and that was often heartbreaking. It plunged each one of us into depths of despair and doubt. Each time, every single one of those people above had to find the strength to dust themselves off, never descend into bitter recriminations and find a way to do more, to go on.

And on they've gone. Like no other campaign I can remember in my lifetime, those same people have fought against the greatest physical challenges (just to add  little MORE tinder to the box) in broad unity and solidarity.

Oh we've disagreed at times! Sometimes violently and almost disastrously behind the scenes. But I can think of very few times when one branch of our campaign really broke something irrevocable with another. And so all of our voices got stronger individually. We helped each other with the details and expertise we didn't have and I think deep down respected one another enough to accept that we needed one another. Even when individual campaign groups have had ego led crises - and as far as  know all have, all are still powerful public voices and none aired their dirty washing in public.

But that is human beings. Human beings are fallible and weak and stupid. The people and power we oppose have institutionalised those qualities in our collective opinion. That is the definition of our campaign that unites us all.

But a campaign is not human, it is so much better than that. It doesn't have to be weak or stupid and it doesn't have to fail. When the arguments are as overwhelming as ours, there is only one thing that can  ensure that we lose and that is us. As humans we're exhausted and frightened and ground down by the misery we see every day in our inboxes. We've been betrayed many times, we've failed together and individually. We've been hurt, we've won only to be cheated, we've been derided and insulted, some of those barbs have gone so deep they fester.

But the campaign was never hurt as we were, because we held it above us, made sure it never sank beneath the riptides we were drowning in. In fact, every time it got stronger. Every blow we struck, chipped away a little of the mountain we needed to move. What it took from us, it placed carefully and gently within our campaign and made it better.

This is a very, very long post for me, and I know that in this world of soundbites and 800 word limits some will drift away. But perhaps it is very very important and perhaps it offers something from my own pain and failures and despair that I can use.

There is a beautiful and quite magical story within this story that I just have to tell.

In those early, revolutionary-naive days of belief and adventure, many of us formed our public personalities. I produced and launched the first Spartacus Report, Responsible Reform and in those alternative-reality days of exposure to the world, a disabled man from Canada, Samuel Miller, read our report and was deeply affected by it.

From that day he decided to be one of those vital cogs in our campaign. He spent a few weeks really getting to know every issue we fought, every argument we made and having seen what we were all doing, he asked me if anyone was alerting the UN to these seemingly clear breaches of the UN Convention on the Rights of People with Disabilities (UNCRPD), a convention that the UK is fully signed up to.

I said I didn't think that anyone was and from that day to this, across oceans, this one man has written to many officials in the UN, outlining the changes that sick and disabled people are facing and asking - begging even that they intervene.

At first they fobbed him off. After a while, perhaps some got a little irritated. He wasn't doing things the "Right Way", he wasn't a UK resident. Samuel was undeterred. He learnt the right way and built relationships with other individuals to ensure that he could do what needed to be done.

Every day, despite time differences - I have no idea when he sleeps -  thanks to the tireless and strange support of one man from Canada the UN seem to have heard him. Oh some will say the visit was always planned, that the UN would always have come. But who knows?

Later this year, a UN examiner on disability will come to the UK for just a few days to hear evidence, and see for himself what is going on here in the UK. Sick and disabled people will have the chance to tell not only their neighbours or their peers or their communities or even their country, but the whole world why we believe our human rights to a place to live, a right to family life and even our right to life amongst others) are being seriously breached.

It won't change the law. The UN have no ability to decide or influence in any direct way what the UK government does or doesn't do. It's just one issue. Just one thread of a campaign often so diverse it's hard to follow every one.

But if you believe, as I do and as all of those other voices above do, that history will look back on this period as a time of great failure. If you believe that there is a large minority group, right here in the UK, who are being persecuted using state sponsored propaganda and unsound laws, who often have little or no way of making it known, then a stage before the world is a very powerful thing indeed.

Strong words aren't they? We don't like that in the UK. We don't like to believe that our state would do something as icky as "persecuting" or engage in anything as "distasteful" as propaganda. That's OK, that's why I rarely refer to it. But history doesn't need to watch it's language and I have absolutely no doubt at all that those who oversaw this erosion of democracy and justice will come to be seen as, at best, cruelly misguided and at worst, criminal.

I want the world to know that. If I can do nothing else, I want the world to know that as far as humanly possible, sick and disabled people agree on one thing if nothing else. Despite our individual voices, we want so desperately to tell the world that we are being scapegoated and hurt. That we are frightened for our futures and for our very security. Our homes are under attack, our ability to heat our homes or feed ourselves uncertain. We face discrimination in the systems meant to enable us that are disabling us. Our right to an education is being hopelessly undermined, our right to live free and independently, just like anyone else, is in danger of disappearing.

The world has to know this. Thousands of us need to tell our individual stories, millions of us need to support it and hundreds of us need to make sure that we do it.

The UK says repeatedly and emphatically that it can no longer afford to support sick and disabled people properly. I'm not actually sure we need to say anything else at all to the UN.

But we do. The Examiner has requested one shadow report from which he can access an overview of the issues and policies that are directly in breach of our human rights. It is very specific. Some of the things we care most about might not appear within this narrow framework. We might have to accept that what we care about most doesn't matter here.

We might have to speak in a voice we usually reject. We might have to be less radical or more radical than we are comfortable with. We might have to accept an emphasis we would rather was different. We might feel the way we present the facts is so important it can't be trusted to any one voice or author. We might be scared that influences we don't trust get a bigger say than we do. We might feel we are best qualified to make the overall decisions because we speak for more people, we might be tempted to shout the loudest.

But for me, I imagine a room with a box by the door and a huge table. Behind the table sits someone we all have respect for. It doesn't matter who.

The box at the door is marked "EGO" and the only way we get to do what the UN needs, is to swallow down whatever fears and doubts we have, open the door, drop our egos in the box and leave a piece of paper on the table. On each piece of paper, we have to say the one thing that we think is most important to tell the Examiner. Some of us will find it impossible to say just one thing and that's fine. We can say as much or as little as we feel needs to be said.

But if we put our views with integrity and honesty, knowing that we did the very best we could, then we can walk back out of that door, leaving our egos in the box. We did what we needed to do. We raised our voices to the world and we can trust that they'll be heard.

Then, with just a few short weeks to go, it's time for the person behind the desk - whoever they might be - to weigh each opinion, discounting none, somehow including all, remembering the tapestry that is simply all of us together and produce a report in the format the Examiner needs. If we can do that, we can challenge a government. We can equal their voice on the world stage.

Of course we must have our own opinions, produce our own work, publish our own submissions.

But if we forget that the campaign is more important than any of us. If we just can't manage this one time to leave our egos in a box at the door. If we can't bring ourselves to trust that one person could be fair and just, all that power of the campaign is lost. We are just individuals fighting for our own beliefs. However many people we claim to represent, if we exclude just one, we failed.

We don't need money or more time or greater resources, we have everything we really need, we just have to take the leap, get our work finished and hand it over.

At the moment, it seems we have been unable to rise to this challenge. Currently, with very little time to go, there are at least four reports from four coalitions and it would seem that none can agree to support one shadow report. You can read more here :

I just aired a little dirty linen for the first time ever and I have no idea if the whole house of cards will fall around my ears, or if people might read what I've written and decide that I tried to do something I believed in to achieve something I thought was crucial. I am not in any of the coalitions who have any involvement in preparing any of the reports and I'm not in any of the groups within them. I speak entirely independently.

Millions of people need us to get this right, they need us to speak as one, this unique time.

I know that we don't have to let them down. We just have to believe in the campaign we've spent so very long building and protecting and believing in, more than we believe in ourselves.


  1. God you are so right Sue.

  2. This is so silly - don't these people purporting to represent US realise they are actually perpetuating thinking we are organised??? - Furious

    Thanks Sue x

  3. God help the Coalition if you ever start eating properly Sue :-)

    1. Hehehehehe. Perhaps it's the hunger that drives me on.

    2. I don't trust you and I find you a money-grubbing media whore and a repellent one at that. Carers UK and carerwatch? Go fuck yourself. Carers aren't charity cases and they aren't safe from the internet stalkers in carerwatch. And now you are working with Simon "Hitler got it right about the Jews" Stevens?

      Self important sponger, no there won't be "unity", never has been never will be.

    3. who are you referring to ?

    4. It's Clive again...he's rather transparent, but easy to ignore. /yawn

    5. Sounds like a thoroughly repugnant man.

  4. Very very well said Sue. X

  5. Phew! You've put into words a lot of what Sue & I have been talking about in recent weeks.

    This issue is, has been and always will be 'bigger' than the 'ego' of individual or organisation and it is very worrying indeed that opportunities to better our lives may be diluted by people who 'shout the loudest'.

    Sometimes it is the quet voice of reason that needs to be amplified until its volume cannot be ignored.

    What you have written, Sue, is such a voice.

    I hope it can be shared, shared again and again until everyone involved has heard it and listened. Really listened.

    And after listening... acting positively for all.

    Hope that made sense!

  6. I'm sat in sainsburys as my son finishes the shopping for me as I can't walk any further, trying not to cry and failing.

  7. I have never feared the Govt., the establishment, my fellow countrymen as much as I have these past few years under the #ConDems. I fear for my very existence, my right to live (not merely survive). I have put my state of health (mental/physical/emotional/spiritual) on the line to try to make a difference. Yes, it is emotive and emotional, folk have died and more will die. All of the sacrifices, all of the losses, all of the memories of deceased loved-ones will be besmirched and dishonoured, if these groupings do not knock their heads together and sort this out. Yes, this is about ego. Mine is repelled by such puerile egotism. I am completely disgusted.

  8. What a wonderful post Sue.
    However, I cannot put into words what I feel about those with their egos - disability is just that - it doesn't matter what type, it doesn't matter which group you "belong" to or "write about" or blog - if you have a disability that's not going to put you in "that" part of the circle that is basically all the same.
    If these so-called "grown ups" want to be the one that writes the report but have thrown your toys out of the pram because others want to write the report as well, then of all the 4 wanting their names in lights should leave it to somebody who is respected, is honest, is well written and fair, is disabled or a carer, and doesn't want to do it for the limelight.
    We have such a common cause that can be destroyed just because people think so highly of themselves. You all ought to hang your heads in shame!

    1. Here, here Sue - United we stand - Divided we fall.

  9. Absolutely blown away. so moving Sue, thank you for all you do for us all xxx

  10. Sue - what do you want us 'ordinary spoonies' to do about this? Of course a single shadow report is needed - groups of oppressed and excluded people in countries across the world produce a shadow report, with far fewer resources, and much bigger areas of difference, than we have. One shouldn't expect any one group to be happy with the content of such a report - if everyone grudgingly says, 'well, it could have been worse', that's success.

    Is it about the bigger group needing to give ground and include key points from the smaller groups? Do we need to contact the bigger group and ask that they do this? If so, whom should we contact?

  11. Spot on with everything you said Sue...the egotistical squabbles between groups deeply saddens me. The cause should be of far greater importance than individual egos. I knew nothing about this 'shadow' report and I am online every day. I have written several times to the UN over the last couple of years and received no reply, but tell me what you want me to do and I'll do it.I know you struggle with your own health, you're a diamond :D Love and hugs XXX <3

  12. You inform - There are 11 million sick or disabled people in the UK - around 5 million or so who need to claim some form of support from their peers to compete on a level playing field.

    On May 22 there was the biggest left of centre challenge of socialist candidates in the last 60 years. They would have brought in new councillors who would jhave fought Austerity and welfare reform at council level, and been the local support ready for the election campaign by these parties, for the government election next year.

    They got pitiful or no coverage in the media or in any of the blogs, of all the millions of people that would and could benefit from socialism.