Thursday 27 November 2014

I Know My Trending Hashtags

I don't know much about tech - several of my friends will splutter at this understatement.

I also don't know much about social media, despite popular opinion.

But I do know about trending hashtags. I've used them to my advantage many, many times and have had many top trending tags, including one global one.

I've noticed the anti-leftie rapid response unit are claiming that #CameronMustGo has only trended for 5 days solidly because a small, dedicated group of lefties have been tweeting it non-stop, even creating multiple accounts to do so.


It's true that a tag can initially trend with relatively few accounts, but the only way it can continue to trend is if new accounts tweet consistently. Volume does NOT create a trend, only unique users.

You might want to share this to counter the propaganda.

And if you doubt what I say is true, do you honestly think if hashtags could be faked so easily Amazon and Apple wouldn't be top trending every day? Or similarly, that the Labour Party wouldn't ensure that such a convenient tag was right up there too?

Tuesday 25 November 2014

The Unum Paradox

Those of you who saw my article about an invitation to speak at a Unum event may know that the responses in the comment thread were fairly inconclusive. About 50% of the responses said engagement was key and to go, the others said they were just using me and there was a danger my credibility would be compromised.

In the end I decided those worried for me might underestimate my Machiavellian streak and that as long as I read from a carefully written speech and posted it here afterwards, it would probably do more good than harm.

So for those who are interested, a copy of the speech I gave is below. I think on balance it was valuable. There was a good mix of 3rd sector and corporate representatives though I can't share who as the meeting was held under Chatham House rules. Nonetheless I insisted on sharing my speech with you all and the Unum representatives readily agreed.

I hope you think that what I said was valuable.

"It's was a very, very, difficult decision for me to come here today. Not physically, but ethically. Rightly or wrongly, the sick and disabled people and their organisations I usually speak to, believe that the corporate world is a cruel and callous one. One concerned only with profit and tax receipts. Can we really blame them after the many mistakes of the last decade or so? There are few companies that know this better than Unum.

But we can't stay in that place of mutual mistrust and justifiable fear forever. At some point, both worlds have to be prepared to listen to each other and find a better way forward. People will only suffer until we do.
That’s why, after much deliberation, I decided to accept the invitation to come here and speak today. 2 hours ago I was in a hospital bed, hooked up to an IV feed pumping calories directly to my heart. I didn’t look like this either. I've spent 8 weeks of the previous 12 in hospital, I've had major surgery to remove yet another 50cms of my bowel. I have less bowel than I need to sustain myself with food alone and I've had over 36 blockages causing obstruction and terrible symptoms.
However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.

If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions. I am entirely my own boss, I can choose when I can manage to work and when I can't. I can pace myself, and set my own deadlines. If I can do it, then so can an employer. I know, because I have enabled hundreds of sick and disabled people to do exactly the same. If I can urge you all to do just one thing after today, please read the comments below an article on my blog, (the Diary of a Benefit Scrounger) entitled “I am Spartacus and I….." I believe it will transform the way you see this issue.

But we are the first generation who must deal with it. Just 50 years ago, people like me would have died. But as the briefing to this event pointed out, we can now ensure that people live with serious illnesses indefinitely and up to 50% of 50 year olds will have at least one serious long term condition. However, we can’t yet always do it comfortably.

Employers must learn to address these problems much more creatively than we do at the moment. Work must be totally flexible - often flexitime, part-time or annualised hours are not enough. We must enable home working much more commonly. Those who need to work in “Slivers of time" must retain the protections and rights of employees on permanent contracts. Finally, employers must learn that retaining expertise and experience can be compatible with large chunks of sickness absence or considerable reasonable adjustments. It just doesn’t make any financial sense to lose the best employees, simply because they can no longer commit to everything they did previously.

For politicians, they must ensure that there are no penalties and only incentives to work. Universal Credit would NOT have done this adequately, despite the rhetoric. They must make schemes such as Access to Work available more freely, though sadly we have seen an erosion of A2W rather than an increase. They must allow quick, easy returns to social security support if work fails and they should consider some kind of portable lifelong fund for permanent or degenerative conditions that could iron out some of the roller coaster of sporadic ability.

I've learnt that the gulf between academic or political analysis of the employment market and long term illness, and lived experience are very different worlds. As a campaigner and someone living with a serious long term illness myself, I have a virtually unique perspective, as I’ve also attempted to produce academic analysis. I know myself that good intentions sometimes evaporate when crowbarred into words on a page. Conventions can dilute passion until it’s all but lost. Perhaps most of all, lengthy chapters of heart and soul can be misrepresented in a media world concerned only with soundbites.

How does it REALLY feel to be in constant pain? We might think we know, but we don’t. I have effectively had Salmonella for 31 years. But human nature doesn’t allow us to believe that could be possible. Sometimes I struggle to believe it myself. Yet I’ve lost count of the times close friends or family have told me of a recent food poisoning in sheer horror. They will say “I thought I was going to die, I was clammy and shivering, I passed out on the bathroom floor. I must have been to the toilet 15 times and I was sick until my throat bled.” And they simply can’t bring themselves to believe that I feel like that every single day. Even people who have seen me exactly as they describe countless times can’t believe that it’s really that bad all of the time. We’re programmed to forget severe pain - If we weren’t no-one would ever have a second baby!!
But the fact is that no amount of evidence or statistics or research - or even good intentions - can enable someone who has lived a pain free, healthy life to truly understand those who have not.

The single most important thing we could do is let go of our paternalistic and sometimes judgemental attitudes to ill health and embrace the vast experience and creativity of those trying to be the best they can. If an employee has decades of a previously unblemished sickness absence record, it is extremely unlikely that they became a hypochondriac overnight. If they insist they need an adjustment you believe is unnecessary, it’s vital to stop and ask ourselves if we can really understand the need.

The ONLY (emphasis) way to design and implement schemes or policies that will work for people with long term illnesses is to co-produce them, ensuring that the people who really know what is needed have an influential say in development."

Comments were invited and discussed after the speeches and I pointed out that fatigue is the most cited factor preventing people with long term illnesses from taking or continuing with work. I said that pain can sometimes be treated, symptoms sometimes controlled, but there is just no defence against the often paralysing fatigue that is present in so many long term conditions. Simply having a comfortable space or two that staff can use to rest or even sleep in for a while could help many to increase their capabilities. It would also help with the "brain-fog" that so often accompanies fatigue, allowing someone to return fresher and more productive later in the day.

Friday 21 November 2014

Disability Innocence

Children have no guile whatsoever when they first come across disability. Perhaps a "person with wheels", or a lovely doggy with the "person with funny eyes". They might stare in curiosity at "that man's funny face" or ask an embarrassed parent "Why has that child got no hair?"

And the key point I wanted to make in this article is glaring out in that last example. Embarrassed parent.

Children are totally innocent. They haven't learned to judge, it will be years before they know what discrimination or prejudice are. For those first few precious years, they are simply curious. It's their job, it's how they learn.

So little Tarquin or Kylie stare at me on the days I use a wheelchair or supermarket scooter with no shame at all. Shame is something adults create and in turn, inflict.

"Tarquin!! Come away darling, it's rude to stare! NO darling, the nice lady won't give you a ride"
"Kylie! Get 'ere NOW!!! Sorry darlin'. (To me) FUKSAKE, KYLES, NOWWWW".

And so we teach our children not to speak to anyone "different". We teach them that it's rude to even look at people with disabilities. We teach them not to learn about them by asking the questions that stem from their natural, childlike, curiosity.

Is it any wonder we grow into adults uncomfortable around any kind of "difference"?

This lovely list of children's books from Scope make great gifts for young children, encouraging their innocence and natural acceptance. I'm sure you'll be buying Xmas presents in the next few weeks and I'm sure many of them will be for young children, so do consider getting them one as a stocking filler?

Click here to go straight to the website  : 

Thanks to Scope for sharing it.

Another friend, Virginia Moffat (@aroomofmyown) recommended this book too with a central character with a disability : …

But What Would Labour Do?

As we gear up for the general election campaign, I've lost count of how many left leaning voters have told me that Labour are no longer a centre left party/are exactly the same as the Tories/are part of the neoliberal consensus etc etc.

Certainly, there are many things about the modern day Labour party I'm not proud of. If anyone knew just how frustrating I have found my dealings with them, how fiercely I've fought them on social security issues and how cross I am about the things I haven't been able to change, no-one would accuse me of naivety in the comment thread. Sadly, most won't know and will accuse.

But to say Labour would be no better than this coalition is just bizarre. It doesn't matter how we look at it or what justification we use there are only 2 parties in the UK that can win a general election, Labour and the Conservatives. All the while we retain the illogical first-past-the-post system we have no choice but to accept this. If we don't, we allow the Tories another 5 years by default.

I absolutely guarantee that my comment thread will be full of Iraq, trident, 10p tax rates and PFI, but I've just never understood why progressives insist on only seeing the bad yet dismiss all the good.

So for the record, the following list are the policies Labour have announced for 2015 so far. Under absolutely no definition could this list be thought of as right wing. None. Is it perfect? Of course not. Do I wish they would go further? Of course I do. Will they stick to every one if they win in 2015? None of us can possibly know. Sadly, you still can't get crystal balls on Amazon.

But the list represents the progressive Labour party we've had for decades. Doubt them, push them, hold them to account, but if you want the Tories out and you live in a marginal seat, voting for anyone but Labour will get you exactly what you most fear. 5 more years of Cameron.

-An £8 minimum wage
-Fight for a living wage 
-Repeal Health and Social Care act
-Repeal the Gagging law
-Repeal the bedroom tax.
-An end to inaccessible WCA centres
-200,000 new homes pa by 2020
-A mansion tax
-A freeze on energy bills 
-Guaranteed jobs or training for young people out of work for a year or longer
-A clampdown on exploitative landlords & more stable, secure rental contracts
-25 hours of free childcare for 3 & 4 year olds 
-A clampdown on exploitative zero-hours contracts.
-Integration of health and social care
-Maximum 48 hour wait to see a GP
-Mental health training for all NHS staff
-A reformed WCA overseen by sick and disabled people
-Penalties for every mistake Maximus make
-ESA claimants out of the work prog
-Reverse the 45p tax rate back to 50p
-A clampdown on payday lenders and tax avoidance
-Increasing a tax on bankers bonuses

Thursday 20 November 2014

Viva la Geek!

I'll take the geek thanks. When it comes to voting, obviously. 

A young Ed Miliband with a touch of the Harry Potter about him

David Cameron (Top row, 2nd from left) and Boris Johnson (Bottom right)

These 2 images alone ought to see Labour with a 20 point lead in the polls. 

Monday 17 November 2014

The Unwanted Guests

I try incredibly hard not to air any dirty linen in public, but I am totally sick and tired (no pun intended) of self professed "real disabled people" who insist on patronising, belittling and criticising those disabled through long term illness. Even of those with no disability at all who ruminate and opine on how I should classify myself and what I should be entitled to. So called "experts" covering their enormous prejudice with a fig leaf of academic lexicology.

For decades, thousands of individuals and hundreds of disabled people's organisations (DPOs) have campaigned fiercely and justifiably for the empowerment and inclusion of people with physical impairments. Using the social model of disability that states people are only disabled by the rigidity and stigmas imposed by society rather than the various impairments they live with, this has led to huge improvements in the way people with disabilities live their lives. A focus on independent living and mainstreaming has opened up the world for many who were previously written off.

But in the last few years, those of us most under attack from the current political obsession with "welfare reforms" have found a voice too. We are merely an unwell needle in a haystack of disability, yet it would appear we threaten the old school disproportionately. Concerned laments and wails of outrage ring out each time any of us dare to say anything at all. No matter that our livelihoods are under attack, our homes suddenly insecure, our health threatened still further by ignorant politicians. Should we dare to try to fight for our own survival, we meet a barrage of insults and are told off for "speaking for all disabled people". Which is ironic as that's exactly what those who are most critical  have done for decades.

I've been regularly and insistently assured that the social model of disability applies to me just as it does to those with congenital or physical impairments, yet how does society disabled me? Even if we lived in a utopia of inclusion and acceptance, I'd still vomit on my bosses shoes and spend most of my day in the toilet. An acceptance that there is any medical element at all to any disabilities at all stems from the fierce opposition those with physical disabilities put up to being "medicalised" and dismissed throughout history.

And it is utterly clear that these old schoolers do not want to be associated with us poorly people at all. They will jump up and down in outrage at this, deny it forcefully, but absolutely everything they do and everything they write betrays how they really feel. there have even been discussions about "separating us out" from disabled people and removing entirely the support we rely on if we cannot work in a self-supporting way. They criticise the language we use, the way we perceive ourselves, our symptoms, our fears and our aims. They have called us "fake disabled" "lazy and workshy", some have even accused us of wanting them killed at birth or re-institutionalised. How can there be any kind of sensible debate with accusations like that bouncing around every word we dare to utter?

The simple truth is that we are the first generation to benefit from enormous medical advances that have saved the lives of those who would previously have died young from serious illnesses. But we haven't yet learnt to do it comfortably or adapted to incorporate the skills of those affected. From distancing from us entirely to criticising every word we say, the old schoolers have proved very grudging hosts to this particular party.

But here we are, invited or not and we're here to stay. Over the next few decades, the proportion of those disabled by illness will increase and we will need to find a new discourse to explain our challenges. A post-social model if you will. One that accepts that there is a medical element to some disabilities and it doesn't threaten the whole to acknowledge it. One that faces up to the barely veiled sneering they have approached us with so far and tries to genuinely find ways to move forward. How utterly ironic that those who have fought so hard and so long for inclusion now feel much more comfortable excluding the nasty, untidy impairments that don't quite fit with their view of the world.

If we can't manage to make the transition towards this basic alliance, perhaps the least we could do is stop shooting off on a hair trigger every time someone dares to express their own issues and concerns. Perhaps we can learn that just because one person holds a particular opinion,  they don't speak for anyone else. However, should that opinion become very popular and should many people choose to read those opinions and share them - of their own free will - then all we can do is accept that there really are serious issues that led to them being expressed.

Saturday 15 November 2014

DWP admits investigating 60 deaths since 2012

Enormous credit to John Pring for the unremitting pressure he has put on the DWP through Freedom of Information requests. This one has uncovered that the DWP have investigated SIXTY DWP related deaths since 2012. As a John McCardle from the campaign group Black Triangle points out, if the government had caused an accident in which 60 people had died, there would be a public outcry. The Prime Minister would almost certainly have to resign for being involved in the deaths of 60 of his citizens.

If this story isn't picked up by the mainstream media, they are as complicit in the outrageous cover up of this crisis as Iain Duncan Smith himself.

You can read the full story here : …

"The Department for Work and Pensions (DWP) has carried out 60 secret reviews into benefit-related deaths in less than three years, Disability News Service (DNS) can reveal.
DWP released the figures in response to a series of Freedom of Information Act (FoI) requests by DNS........

Thursday 13 November 2014

Who Will Watch the Watchmen? An Open Letter to John Bercow

Dear John Bercow,

I was incredibly naive when I started campaigning for the rights of people with long term health conditions and disabilities. 

I believed passionately in democracy and that here in the UK, we had one of the best political systems in the world. 

I had always believed there were strict rules governing MPs and that they were held to account by customs and conventions that had served us for centuries. Sadly, that naivety is long gone. 

Over the last 4 years, I've learnt that democracy is merely an illusion. I've learnt that a politician can do or say virtually anything he or she likes and no-one will do anything about it at all. 

In the case of Iain Duncan-Smith, we have seen the results of a failure to govern the governors as never before. He has lied - not "misled" or "misdirected" - to parliament repeatedly. He has lied about who is affected by his "reforms". He has lied about who is protected from them. He has lied about how much they have saved the treasury and he has lied about their efficacy. He has lied about the level of support for his changes and lied about the timescales of their delivery. 

The results of his lies are clear for all to see. Vulnerable people he promised to support go hungry or are left without care or security. Nearly a million people have been driven to foodbanks. Homelessness has risen, the benefits bill has risen and the housing bill has risen. Sanctions have soared - over 500% in the case of those too unwell to work - and a fiscal black hole of billions is becoming apparent at the treasury as every one of his major schemes grinds to a halt. Universal credit, Employment and Support Allowance, Personal Independence payments, all have failed, leaving millions stuck in limbo.

Yet still Mr Duncan-Smith lies and still his lies go unchallenged. 

This petition calls on parliament to investigate those lies and hold a full and transparent enquiry into his conduct. He has even repeatedly bullied the media not to hold him to account, can he bully you too? Is there no-one prepared to challenge this man and stop his inhumanity? 

Campaigners will never rest until the scale of this man's failures are clearly exposed to the public. Until his dishonesty is fully revealed. He will not be reshuffled or sent quietly away to "spend more time with his family". No matter how long it takes, Iain Duncan-Smith will be shown as the cruel bully he is.

You could choose to make sure that happens sooner rather than later, before more thousands of lives are ruined by his incompetence and lies. You have the power to restore at least some of the democracy we have lost. But make no mistake, now or in the future, it will happen. I and many like me will make sure of it. 

Saturday 8 November 2014

Opinions Please

Ah, decisions, decisions.

My very first tweet about Maximus last week elicited an almost immediate email from their PR director asking to meet me for a "chat". He spent several paragraphs persuading me that Maximus in the UK was an entirely separate company to the Maximus in the US so roundly exposed by the dedicated disability journalist John Pring.

You all know I believe in engagement whenever it has even a chance of making things better for sick and disabled people. You also all know that I vowed years ago I would never become one of those people who believe their own opinion is more important than the opinions of those they claim to represent. I will never sneak around in secret making deals and suggestions that haven't come from you. I will never take anyone's money or tempting offers of personal gain in order that you can always be sure what I write isn't compromised by anyone or anything else.

A long time ago, the PR boss at Unum got in touch. I met with him despite much personal anxiety and he told me everything the Maximus guy said last week. (Which gave me a wry smile. If I'd known they were all so saintly, I could have given this up years ago ;))

I've stayed in contact with the Unum guy and I do believe it has helped us several times. I've also long been in touch with their counterpart at Atos who has often been able to clarify things or even help me to oppose IDS and the DWP

But my Daddy always said "Watch the tiger when it's licking your ear". Seriously, he must have said it several times a week my entire life. I'm far from silly or gullible when it comes to politics. I'm well
aware that the only reason these men bother with me is to improve their own reputation or counter
some of the toxicity of the disability debate in the UK. I ve always believed that as long as it benefits us, there is no harm and I've always thought very hard before using anything they've told me.

But later this month, Unum have asked me to attend and speak at an event they're organising on the NHS aiming for more focus on prevention and less only on cure. This is something I feel very passionately about, and if me speaking could change the way healthcare is delivered for the better, then it seems pointless to refuse just because I might find the hosts distasteful. I am told that there will be attendees from the corporate world that campaigners like me often struggle to reach.

So as usual when these things crop up, I thought I'd leave the decision to all of you. Of course Unum want more prevention, it would mean fewer claims they have to pay out on, but I very much want more preventative action too, so I can't see why it matters who does the inviting. Of course, they want to be able to say "Ah, but Sue Marsh is coming, see how much we've changed." But I'm not against being used if the using goes both ways.

I will never be corrupted by these men and I will never be less than 100% honest when I discuss them, but if you all think it's a matter of principle, then I'll respect that view. If you think something could be achieved by having our view represented in theses kind of circles for once, then I'll gladly attend and do my best for all of us.

I'd be grateful as ever, if you could leave your views in the comment thread below.