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

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. 

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.

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 : http://disabilitynewsservice.com/2014/11/dwp-admits-investigating-60-benefit-related-deaths-since-2012/ …

14

Nov 2014

DWP admits investigating 60 benefit-related deaths since 2012

By john pring

"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........

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 https://you.38degrees.org.uk/petitions/investigate-ids-for-lies 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. 

Readers can sign the petition here https://you.38degrees.org.uk/petitions/investigate-ids-for-lies

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.

Grazing

I am grazing.

You will think it is the dream life. I am struggling with my rebellious bowels in a kind of crocodile-esque death-thrash. I have to be ingenious with my induction of calories to the point of a masters degree in nutrition.

I have to ingest thousands of calories a day to have a chance that enough will cling to the edges and think fat. Maybe 3 or 4 thousand calories a day gives me some chance of simply maintaining this precarious 38 kilos I'm dicing with.

The TPN (total parenteral nutrition or IV feed, I'll stop explaining it soon honest) looks very likely as clearly this kind of lifestyle isn't sustainable or desirable. However much you much you might think it would be.

So, I have to have a steady and extremely appealing list of delicious high cal treats to convince me to keep munching, cow-like, stuffing my little foie-gras liver. At the same time, these endless banquets of tapas and sugar need to leave so little residue as to pretend they were almost never there at all. I need to sneak the calories in, hidden behind loops and valves and whatnots, trick my guts into not noticing.

But even more ingeniously, I can't just munch on additives and chemicals and false cheese. Nope. Whatever I get has to be the "made-in-someone's-kitchen" variety, ergo the most expensive in almost all cases. If I don't follow this crucial rule or try to fudge it, the whole exercise is pointless anyway as it just makes me more ill. So basically I need a healthy, unhealthy diet with thousands of calories and no residue. I challenge the best dietitians to better mine. When I can bring myself to do it properly.

On the odd quiet month where there might be a little more about for good food I might make sure I get a grazing selection twice in the month. This is nowhere near enough, I need about 2 or 3 a week every week.

So favorite examples would be a rocking cheese plate. Nibbles on high cal cheese and barely-there water biscuits with the odd grape as a treat if I'm feeling rebellious. Homemade fudge, ice creams of enormous cream and sugar content, honeycomb, fruit jellies drenched in sugar, fresh squeezed lemon and honey with hot water (and a pinch of salt for the electrolytes. Add ginger and garlic & chicken stock for a super-food broth.

Marshmallows, jelly babies, jelly beans, bruschetta type crackers, antipasti under oil in jars. mop up the oil too. I have found these tiny hot red chillies stuffed with anchovy paste so salty it makes your eyes water. They're suspended in a chili oil  (I need lots of salt too.) Cured hams like parma or prosciutto. Toast on a light bread like a bloomer. Piled with as much butter and jam/marmalade/honey/chocolate spread as I can balance on. Dipping tea biscuits like Rich Tea in golden syrup because it's yummy. Having tea-dunking biscuits by you at all times so you can dunk a biscuit to dissolvey mush pretty much hourly.

For food, mashed potato or the middle of jacket potatoes with butter and cheese sauce, bacon sandwiches with crappy white bread. In this instance, the crappier the better. Stuffed pasta parcels with butter and fresh sage, tinned fish of all kinds, (quick pause there as 10 year old came into bedroom to give me an olive. We all play this game.) When they go to the fun fair, they wouldn't dream of coming home without a candy floss for Mummy.

Croissants with lots of french butter and as much jam/marmalade/honey/chocolate spread as I can balance on (yep, that's a theme. Balancing). French butter is an even-higher-level treat but if I have some I pretty much put it on everything I eat until it's gone. Smoked salmon, avocado, bananas, yoghurt, custard, rice pudding (you guessed it, with as much extra sugar or cream, preferably both, I can tolerate.)

If energy allows, and this isn't really one of those periods, stuck as I am in bed in a sort of in-hospital-from-home limbo until I can be made a little more stable, I make soup. Pretty much from anything I have combined with chicken stock, onions and some spices or herbs. Whizzed up, most delicious veg are fair game and this is where I get the most nutrients. I can't even eat much in the way of fruit or veg, so this way ensures I get all the nutrients I can from what I can have. Ditto casseroles. I can steer clear of most of the meat in a casserole, eat the very soft veg like parsnips or carrots and get all the goodness from the meat and the vegetables in the gravy.

But now we're in the functioning-relatively-normally-if-able-to-eat-hot meals-stage.

At the moment, if I can't keep it by my bed, or get it in the fewest movements possible from a fridge, cupboard or freezer, it's not really much use to me.

Nothing I need to eat is on most people's necessity list. Every last item is deemed a "treat" or a "luxury". No-one needs to buy peanut butter ice-ream and salted caramel, the idea is so far from what we learn about absolutely everything that resembles a "normal" diet. We're programmed to think of these foods as "bad" or "fattening" or "unhealthy". The stigma is huge.

So imagine if you will you're a work colleague of Dave's or a friend from the school gates and you come round for an evening. You know the wife/new acquaintance is extremely unwell, but not much more than that. You know it's her bowels and she has lots of operations. You go round to visit and she spends most of the night sucking sweets, eating ice ream, nibbling cheese and parbaking croissants. You'd almost certainly conclude any problems she might have were of her own making! That is so far from the idea of "healthy", I usually end up giving dietitians recipes.

You have to eat often! As soon as symptoms allow, you're right back at it. So you can't really ever be far from your grazing stash without planning. It's not just me. I've found a whole world on social media who have to eat like this every day and know exactly what I'm talking about. People who effectively stuck in bed, people with poor mobility, people who are very isolated and have little help at home, all of whom are a little too old or frail or unwell to keep weight on easily.

I always think to myself that if I was rich, it would be fine. I'd potter through farmer's markets and gorgeous little deli's in cobbled high streets buying various beautifully wrapped little mouthfuls of gorgeousness. I'd hover from Rosette to Michelin star eating delicate mouthfuls of perfection that even I can eat 5 courses of and still fancy a kebab. I'd sip high-calorie cocktails and eat Belgian chocolates for breakfast.

But as it is, I generally feel too guilty to do it, even though I need to. It's hard to spend lots of money on rubbish you won't let your kids eat. It's hard for 50% of the budget to go on your capricious whims or fancies of the day. On food you might not even get around to managing or that reappears rather sooner than it needed to.

As a final word to all high end, high cal food manufacturers : Lots of people who literally can't punch their way out of a paper bag for one reason or another buy your products. We can just about manage  folded paper packets and rippable foil, but frankly, anything more complicated or durable than that will effectively bar us from actually eating it at all. If it needs a knife, pair of scissors or brute strength, lots of us won't even be buying it.

So I manage to have a condition where the thing I have to do is sit in bed all day every day, preferably waited on hand and foot with people literally peeling my grapes and braving great quests to get exactly the brand or type of something I desire. Talk about a princess. It's a worry really.