Crip-Crusoes

Most of us have sat at home watching some kind of reality show or documentary and assessed whether we could meet the challenges they involved. Surely it's part of the human condition to wonder "could I survive in that habitat?" "Could I eat that food - or manage on no food at all?" "Would I cope emotionally?"

Maybe you've wondered how you would have reacted in a war situation or simply could you get through to the last round of Masterchef without collapsing with exhaustion.

I often sit at home and marvel over the terrible and frustrating reality that someone like me would never get a chance to find out but is surely better equipped than most?

I mean can you imagine me applying to go on The Island with Bear Grylls? I already flirt with malnutrition on a daily basis and that's with the might of Mr Tesco at my disposal. They'd laugh me out of the room.

Ditto The Apprentice. How could someone with no "acceptable" work experience prove that they are capable of being Alan Sugar's next apprentice? I imagine that not being able to guarantee you could get out of bed long enough to complete the first day pretty much counts you out. If however you've learnt to plot whole strategies from a bed on a fairly regular basis, you might just surprise him by doubling your money without ever leaving the room.

I suppose I might get luckier on X-Factor as my "make-the-audience-cry-back-story" is pretty strong.

But I'm convinced there's a deeper point here no-on really appreciates. To survive a long term serious illness, you need to compensate. First and most importantly, you must train your brain to overcome the limitations of your body. We all do it to a degree. You have to think strategically all of the time, minimising every last drop of energy needed to complete a task successfully.

You often find yourself fighting life or death decisions with medics or other support workers - will you get the surgery/treatment/drug you so desperately need? You have to, failure just isn't an option. You learn that you pretty much always "can", that there really is no such word as can't when your quality of life depends upon it. And so you learn just how far human beings can be pushed without breaking.

With Crohn's disease like mine, and lots of other conditions, you probably do know what it is to really be hungry. Really hungry, not just 8-hours-since-my-last-square-meal hungry. You may have gone days or even weeks with no solid food at all. Sometimes months unable tot keep even the smallest brigade of calories on the job before they are drowned in a toilet bowl, one way or another. You get used to functioning on empty. Adrenaline often replaces what other people get from food, fueling us in different ways to others. Again, our bodies learn to compensate.

And you will probably have learnt very definitively whether you would be good under torture or not. Every long term illness will have required the patient to undergo a series of tests and procedures that are always "for your own good" but often incredibly difficult to go through. Most patients just go through these things once on their way to a cure. Manning up for a lifetime is quite a different thing. You know from bitter experience that yes, the tube does hurt, no, this won't cure you and no, it won't just be a little bit of blood. Yes the needles do sting, yes, I'm afraid the 2 litres of drink ARE very unpleasant and no, you won't feel fine afterwards.

With a medical drift towards giving general anesthetics for fewer and fewer procedures, you will almost certainly be expected to tolerate the almost-intolerable on your way to treatment. You will probably know how it feels to allow another human being to put a plastic tube through your nose. Or you will have had some kind of implant fitted under your skin whilst awake. You will know how it feels for someone to dig around unsuccessfully to find veins or arteries that just don't want to play, while you sweat and clench your teeth and look away.

As for isolation or separation from society - most of these shows involve removing the participants from their homes and loved ones - most people with serious long term illnesses will have learnt more about these things than others will ever have to learn in a lifetime. Initially you are defined by your "difference" - "she's disabled" or "she's always ill." Then, with that difference in mind you have to let people down all the time because you're too sick to be the friend they need. Or you spend months shut away in a hospital far from friends and family on a fairly regular basis.

You learn the length of time like a martial arts champion. The only way to truly know how long a day is is to sit still through one, in the same place all day, unable to read or follow a TV programme, with no visitors and only the tea trolley to mark the day into sections.

If anyone asks me what Crohn's has taught me the most, I always say patience. I'm impatient by nature and it took so many years for me to learn that I can't make everything happen when I want it to. You can't rush nature, there just isn't a way. You simply have to submit to her. Add on hours waiting for late appointments, many more waiting for desperately needed pain relief, two month waits for tests you need yesterday. 6 month waits to see the only consultant who really understands your unusual new symptom. Months or even years waiting for some government office or another to decide whether to give you any support or not. Wait, wait, wait, wait. You get VERY good at waiting.

So I'd be interested to hear from other "spoonies" about this. Is it just me, or do you all think your conditions have equipped you with coping skills that make the average reality TV star look like a cry-baby?

I think we should pitch for our own show : "A Dozen Crips-Crusoes" or "Vomit Valhalla" Maybe? There could be spin-offs - "Cancer Cove" or "Shipwrecked Shirkers" - we could compete against a few bloated city boys and see who the shirkers really are?

I'm only half joking. I think the public would be astonished to follow the lives of a dozen "ill" people for a while and I'll lay a little bet that we'd all be eating nice fresh fish, sleeping in comfy shelters and hooked up with fresh water by the end of the first day.

The NHS Code of Silence

As you all know by now, I find many things about UK healthcare perplexing. I didn't start this blog to be a welfare warrior - that just can't be left undone. I started it to muse on the bizarre and kafkaesque world of long term illness and the oh-so-unfathomable way we seem to approach it.

Regular readers might know that for the last couple of years, doctors have said "my bowel just doesn't work very well any more". That I've had so much surgery "things are very slow in there". My bowel is "flabby" apparently. Unable to put on weight and devoting most of my waking moments to maintaining the few kilos I do have has long been my primary obsession. It's a full time "job" in itself

Surgeons and medics have said that I "don't have much bowel left" (1.5 mtrs compared to the normal 4 or so) and that "less than a metre is not viable". For obvious reasons, I've resisted going too deeply into what "not viable" means.

And so, for two years, there's been a "no more we can do" elephant in the room becoming increasingly insistent that I give it my attention.

There have been mutters of "wait for a bowel transplant" or "fed through a tube for the rest of your days", but otherwise, I've had little choice but to man up and survive each day as it comes. Copious vomiting, impossibly endless diarrhea and fatigue so crushing I can never quite explain it with mere words appeared to be the best I could hope for.

I always wondered though, how, if you need 4 mtrs of bowel to "be viable" and I only have 1.5 mtrs left, it could be possible to go from hunky-dory to "not viable" in the space of a centimeter. If 1 mt is "not viable" and 4 mtrs is average, how can there be no ill effects at all from very-nearly-only-a-metre?

Perhaps cells have a union and simply down enzymes and refuse to work at this magic metre mark until agreements have been reached? Maybe there is a little switch somewhere that just somehow knows to activate as the magic threshold is breached?

Anyway, understandably "just soldiering on" has been something like a little corner of hell, right here in Sussex. In particular, the last month or so has been close to intolerable. The pain fogs my mind, the nausea and constant diarrhea leave me ever weaker.

And so, as all good spoonies know, there comes a point where you can't avoid a medic any longer. You might have ranted or railed, naively pledged never to set foot in a hospital again, never to be defeated by a few mutant atoms, but in the end, the horror of reality just can't be kept in that box anymore. It's full to overflowing and something has to give.

Last week, frustrated by GPs and utterly symptom-miserabe, I phoned my hospital for advice.

A very nice voice called *Dr Unique came on the line and I tried as hard as I could - as I have so, so many times - to explain what was wrong with me. I've always assumed there must be some unwritten rule that says you only have about a 30 second window in which to convince Drs that, yes, you really are ill, you really aren't a delusional drama-queen, and yes, you can understand words with more than one syllable.

But what is this?? Dr Unique has time for me? He actually seems to have an idea of how he might be able to help me and - to be honest this is still freaking me out today, 4 days on - he seems to very much indeed know what he s talking about. Even more miraculous, he seems content to share it with me as one adult to another. I am so surprised by this that I spend the first 5 minutes or so of our chat missing what he was telling me, trying to process the change.

I've always wailed miserably "How can one body produce so much poo? I am a poo tardis. If you cut me in half, the word "poo" runs right through me like  stick of Brighton rock. How can this be? How can I need to poo 15 or 20 times a day when once will suffice for most? Where does it all come from? How is it, that despite constant grazing, cow-like on high calorie snackage, stuffing myself against my will like a little foie gras duck, I can never put on weight? In fact it's all I can do to maintain it?

Well, Dr Unique knows these things. Frankly, I'm always a tiny bit relieved when a medic I don't know even knows what crohn's is, let alone anything of the smorgasbord of details that might complicate it. But Dr Unique appears to be very good at his job.

Firstly, he explained I had something called "short bowel syndrome". Because of the many, many operations I've had, I've lost more and more bowel and so, more and more of the ability to get any goodness from my food. It turns out there IS a middle ground between "healthy" and "not viable" after all.

The pain could be due to "bile salt overflow" which Dr Unique uniquely appeared to know would almost certainly be causing pain as I don't have the bit of bowel left to avoid it!! How could that have been hard for others to know?

I have "bacterial overgrowth" and that can be treated too.

So, whilst Dr unique couldn't quite assure me my bowel will grow back, he had a whole host of weapons in has armoury to at least hopefully make me a bit more comfortable.

But, here's the point. None of these things were new to me, doctors had muttered about them before. But no-one would explain them and why they might work, using big grown up words and everything.

We discussed "anastomatic strictures" (the real term for the pathetically wooly "flabby bowel" I'd been fobbed off with". We talked at length about electrolyte imbalance and how there were simple drinks I could make to help me absorb more nutrients.

In short, I can avoid the above 800 or so words by summarising : He treated me like an equal. Like a grown up with my own brain and everything.

Why why why why why why why why why is that so hard?







*Names have been changed to protect the innocent

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 :

http://disabilitynewsservice.com/2014/05/hopes-for-single-un-shadow-report-in-tatters/

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.