Sojourner Truth – how well she was named

Sojourner_truth_c1870Sojourner Truth (1797-1883) is an inspirational woman- an ex-slave who spoke out against slavery.

“That man over there says that women need to be helped into carriages, and lifted over ditches, and to have the best place everywhere. Nobody ever helps me into carriages, or over mud-puddles, or gives me any best place! And ain’t I a woman? Look at me! Look at my arm! I have ploughed and planted, and gathered into barns, and no man could head me! And ain’t I a woman? I could work as much and eat as much as a man – when I could get it – and bear the lash as well! And ain’t I a woman? I have borne thirteen children, and seen most all sold off to slavery, and when I cried out with my mother’s grief, none but Jesus heard me! And ain’t I a woman?.

Because, you see, when white men talked about women – they only meant white women.

Carers these days may identify with Sojourner’s question. When she asked ‘Ain’t I a woman?’ we may ask ‘Ain’t I a worker?’ When people talked of ‘women’ to her, she knew they had a big, fat thought bubble that said “Oh, but not you. Goodness me no, I didn’t mean you.” And when people talk about workers, about people who work too hard for too little money, about people (from CEOs in big business to unionised workers) being ‘paid the market rate’, you know that it if you are a carer, they are not talking about you. Even if they couldn’t for one day do the work that you do, you are somehow not the workers that they mean.

Maybe we need a T-shirt with these words on it: “Look me in the eye and tell me I ain’t a worker.”. Sojourner lived long enough to convince people of the justice of her cause. Let’s fight to make sure that we do too.

As  carers we can’t strike – but we can go on virtual strike. Join us, 21 June 2014 and show the world the cost of care!

Guest Blog: The importance of appropriate housing for Carers & Cared For

hospital bedOnmybiketoo writes below about how the invisibility of and public amnesia about family carers adds an extra burden to carers’ and carees’ lives. If you thought that being a full-time family carer had dealt you enough blows, wait till you try to find an appropriate place to live. This is a problem that can be solved – if we really want to.

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Many informal / unpaid Carers give up a lot of freedoms that many in society take for granted. Freedoms such as getting up when you plan to, going out when you want to, being you as an individual. Life’s timetable is driven by the needs of another person or persons.

Carers find themselves confined to where they live a great deal more than those without such responsibilities. Going out is such a logistical exercise, if you take your Caree, will they act in a socially acceptable way, look normal,[it does not matter to you but the issue is still there] be able to cope, get ill while out, will you be able to get done what needs doing while trying to look after loved one at same time. If you leave them at home, can you get care cover, will they be okay to be left alone. This leaves a lot of carers socially isolated, which is why the space in which you inhabit is so important.

Homes can become quasi hospital wards, become uncomfortable to live in. Everything being geared around the Caree with the Carer having to live in the spaces left in between.  Your home may become full of specialised equipment, incontinence sheets, latex gloves, prescription medication and other medical consumables with little space to store it. Spouses may have to move into the guest room as the master bedroom is full of specialised hospital bed, hoist, sliding sheets, ventilation, CPAP and nebulizer machines. Many pre-pension age couples have come across the problems this causes especially when the government decides to then punish you for having to live this way by taking some of your housing benefit off you as you have a spare room that is not a spare room. Yet at the same time if you have a paid night care-worker many local authorities give you an exemption, which does not make sense to me as if you need night care, that care-worker is not going to be sleeping, unless they are live in of course. So in that case, Caree gets a bed, care-worker gets a bed that can’t use as working and spouse Carer gets to sleep on the sofa in the living room.

Carers looking after the severely physically disabled also have the problem of finding some where suitable to live that meets the accessibility needs that a wheelchair user needs. If you are fortunate to own your own home there is quite a bit of help out there, grants and charities will help make adaptations to your home. If you rent you are basically stuffed, as no one will listen to you, you will be added to a local authority waiting list for a home type that no one is building, or existing housing stock does not exist. Then you will get the pressure from the local OTs and Housing Authorities to move into totally unsuitable housing, like partly converted OAP bungalows, with rooms so small that living will be made impossible. You will then be blamed for not taking what you have been offered, be told you are being unreasonable etc. On top of that all these TV programmes that help people such as DIY SOS and the like only help people that own their own homes.

If you are lucky enough to find some where to live, everything will be built around the needs of your Caree and not you the Carer, so kiss goodbye to that long soak in the bath once a week that kept you sane.

Other housing issues arise from not being able to have space to take a break from each other, especially if you are stuffed in a small flat 24/7 without outside space. Does not matter how much you love your Caree everyone needs their own space at times.

Being a Carer is difficult enough without the authorities recognizing this and doing everything they can to make life just a bit easier. Housing needs to be a key element of the better care fund, needs to not disadvantage those that rent their properties. Housing authorities really need to examine their housing stock and enforce the 10% of properties that need to be built to lifetime homes and wheelchair accessible standards. Time and time again I read the minutes of planning meetings where local authorities have caved into the developers that make out they cannot make enough profit on the building of bungalows. This is a short sighted decision that as the increasing population percentage, ages will come back to bite their successors in their bums in years to come.

Carers must have safe places to work in, sticking them in unsafe living environments is condemning them to their own health problems later, not to mention being one accident away from being a greater burden on the state. If you are to be stuck 24/7 in an environment then that place should be as safe, mentally stimulating, and comfortable as possible.

After all we are Carers, not prisoners that have done something wrong.

Carers – invisible workers the unions choose to forget..

261 VIRTUAL STRIKERS on 21 June 2014 means 6,264 VIRTUAL STRIKE HOURS which would amount to  £93,960 VIRTUAL cost to the state if you had to replace them.

Just as well its not a real strike, eh?

Britain doesn’t choose to pay its family carers - but if these people died tonight (and working very long hours every single day without time off for weekends, holidays or even ill-health makes us much more likely to break or die than the rest of you)  it would cost the state  over £34 million a year to replace!

And thats just to replace 261 of us. There are over 7 million carers in the UK. Do the sums, why dontcha?

Unison, Unite, NUT, NUJ and all the rest of you unions – just think of this, and remember how lucky you are.You are able to strike to improve conditions of pay, sick pay,  holiday pay.You can refer to the European Working Time Directive. Isn’t it time you recognised the workers on your doorstep without these benefits? Carers cannot strike, and (maybe co-incidentally?) we have no pay, no sick pay, no occupational pension or holiday entitlement.

What I have issue with is that unions spend so much time talking about the heart-stoppingly poor working person – and  yet you  blank us carers – the absolutely poorest of the poor –  totally and completely. Hypocrites! Face it,  you are no better than nasty Amanda, Miranda, Belinda  - the yummy mummies with the hairbands, the black labs and the 4x4s who can never ever notice people whose children are in state school!

We’re not in your ‘gang’ – and you don’t care a toss for anyone who isn’t . You don’t recognise us poorest of poor working persons because nobody pays us for the slave-labour hours we undertake and so we can’t pay you any dues.  Cynical am I? I’m happy to listen to you explain why it is you fail to recognise us!

And, ok, you cannot strike for us, and have never spoken up for us – but isn’t it time you stopped walking by on the other side of the street?

You talk about representing the workers. Good. Why not look at us?

Please read our Carers Manifesto. Please support the Carers Virtual Strike.

Sod the Oscars!

84th_Academy_Awards_PosterMedia, luvvies, chattering classes. Can I just say, SOD the Oscars!

Get it into your shallow heads that the best supporting actors and actresses in the world are family carers. In that great epic This is our Unnoticed Life 

‘Course we  get no red carpet, no statuette, no applause, no recognition.  We just put the hours in. Twenty four hours a day. Every day. Every week. Every month. Every year.

And we’re expected to smile and be on our best behaviour the whole ***** time!  While those who elect to speak on our behalf talk over us. (Sometimes, it seems, explaining, the huge amount of nothing they claim to do on our behalf.)

Because anyone daft enough to work round the clock for nowt can’t be quite right in the head, can they?

Not like the rest of the world, who know the “going rate”. Who have no intention (or even concept) of working more than the European Working Time Directive sets down. Who would expect a salary in the thirties, forties, fifties, sixties of thousands and yet are astonished that we might think a means-tested partial access to £59 a week doesn’t quite cut the mustard.

Excuse me if I sound bitter. I am.

With such a divergence between our interests and those of the ‘professionals’  its no wonder we #carers have had to fall back on a Virtual Strike!

Charities: have you literally NO idea the hours that carers work?

OK, today I am – literally- incandescent. I could fuel a decent sized city with the power of my rage.

I have just been filling in a survey from a charity that represents carers. It wishes to establish the state of play in 2014.  And I was astonished when I came across the following question:Image

Er?

All work over 50 hours is lumped together?

This charity should know better than anyone else that many carers are quite literally working – or on call –every single hour in the week. And that adds up to 168 hours.

WHICH IS WELL OVER THREE TIMES AS MUCH AS 50 HOURS A WEEK.

Why is this charity not asking us for the total number of hours worked?

Don’t they want to know how many carers are really working an unsustainable workload?

Are they, perhaps,  staffed by people who have never been a 24/7 family carer and have no idea whatsoever of how unrelenting our lives are?  Is 50+ hours a huge workload to them?  Are they, maybe,  unaware of how many carers are working a truly unbelievable, health-shattering, inappropriate, deathdefying week?

Now, I count as ‘hours caring’ every hour that needs to be covered by someone else if I were knocked down by a bus – which in my case – and in the case of many many other carers, is every hour in every day in every week. Either directly caring or ‘on call.’

And ‘on call’ is no figleaf. At 3am I may well be lifting, carrying, resuscitating, making decisions of life and death. And have been doing so this entire millennium.

I am totally offended that my 168 hours a week should be  bracketed as 50+  by the organisation that purports to represent me  and my difficulties to government. This unsustainable level of work has deeply damaged my health and will shorten my life between 7 and 10 years.

If like me, you are caring at this level AND trying to earn at the same time you may literally be working  more hours in the week than there are. I reckon I work well over 200 hours every week, dropping what I do to deal with a crisis and then having MsF lying on a sofa by me while I carry on.  Yes, it  is no wonder I will die young. Probably while this charity is putting together yet another strategy paper.

Can I be the only one of the UK’s 1.4m fulltime carers in this position? Sadly not.

We are living in a country in which the population are sincerely concerned about  Minimum Wage, European Working Time Directive etc. Where the media makes a fuss about people having to work longer before they retire, or being ‘unpaid interns’.But that  concern stops dead  before it hits the cohort of family carers who are 1 in 10 of the population!

Yet at a recent agitation meeting where a daycare facility was closing, I was heart-wrenched by the piping anguish of a 94 year old woman. “If this closes, how on earth will I be able to care for my daughter?”

She had been caring for 74 years!

We family carers  don’t work 50+ hour weeks. We work lifetimes, and we need realistic support.

Surely any and every charity that represents us carers should be raising awareness of how much worse things are for us than for the generality of the population and actually getting out there and trying to make an actual difference?

I fear I will be accused of being unkind, unfair and even – blow me – ungrateful, but ponder this. If those that represent us have really lobbied effectively over the last decades,  how come the UK family carer is still working  these unsustainable hours unpaid round the clock with no hope of anything but a diminishing state handout, no occupational pension for the work they put in, and  every likelihood of an early death?

To all charities and organisations, I say: If you genuinely want to represent carers, you need to know what our real lives are like. And you need to be as angry about our situation as we are!

So far 227 carers who work 24/7 are signed up to the Carers VIrtual Strike. If you had to pay agency rates to replace just these few people for a year it would cost the state THIRTY MILLION POUNDS. Just saying.

Hope is the thing with feathers..

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words -
And never stops – at all        Emily Dickinson

I love these words and today I’m clinging to them particularly fervently. Because, dear readers, today I’m feeling a little hope-less.

Hope-WattsI shouldn’t be – today’s been pretty good. Sun shone blue. Council sent me back a sizeable chunk of overpaid tax, hurrah. Cleared out junk room and made it a respite carer bedroom. (And because I am fortunate in misfortune I didn’t even have to worry about the bedroom tax while so doing) Lucky lucky me.

All’s for the best in this best of all possible worlds, yes?

No.

Poor MsFitty continues in a bad way. Its not the seizures, more the mental confusion and strange pathways her brain is taking. And she’s not exactly seizure-free – she’s had six or seven corkers over the week and spent 9 hours in hospital when she was supposed to be on a birthday treat. I could weep..

And then I’m beleaguered by the many, many things that need to be done, that have to be done, that she wants to be done, and that she cannot do alone.

I’m helping her catch at the coat-tails of the education she still wants – and which our local authority is finding disgracefully impossible to supply.

I’m trying to track down the missing care promised by the health authority which vanished like some ethereal flower wasting its bloom upon the desert air.

I’m trying to help MsF manage to balance her interim meds (four separate scary drugs to hold things in place until she goes back to hospital as inpatient). 25mg too low and she fits for England; 25mg higher and she’s a zombie – only aware that she hates not being aware. Vile balancing act!

(Oh, and I’m tracking down the tertiary hospital appointment, come to that.)

I’m working out when I need to be away and finding and booking cover.. Lucky among carers to have found (poorly paid) work that can be done while caring for someone as un-leavable as  MsF, I find working around the clock while caring around the clock leaves one all limp and floppy and isn’t good for the health.

My own epilepsy has required a recent change of meds – until they kick in, the sunlight slaps me in the face and knocks me down like a playground bully. Just as well I don’t drive.But in this car-centred world it makes a lot of things still harder.

And while this is going on my light bright, bubbly, enchanting daughter is become lumpen and apathetic – weighed down with chemicals and errant brain impulses. It would break the heart of a wheelbarrow.

And so many things make me angry. An MP claims £1600 for curtains for his second home. A DJ pretends he’s a used car dealer to save paying £1m tax. A twinkletoed footballer is worth £300,000 a week.

And a family carer is STILL worth nothing  unless they earn under £100 a week, In which case they get £59 carers’ allowance.

Priorities in this country stink to high heaven.

So folks, I need to cling to that thing with feathers because blind hope is the only help available.

Family carers are going on - virtual – strike in June. Please sign up to support us. Actions speak louder than words – but for carers, words are all we have. We can’t withdraw our labour without endangering those we love! Give us some hope, please

OK, it’s a Carers’ manifesto. And why not?

DSCF4087 (631x800)It was pointed out to me today that  in this blog I have, in effect , written a Carers’ Manifesto. So I had a look at it, and – bigod – it is!  It’s a real live Carers’ Manifesto!

(But why not? Its also very sensible.)

There is no way that the state can compensate us carers for the sheer amount of time we  give up voluntarily – nor should you have to. We do it for love, or duty, or common humanity. And often a combination of all three.

But you can prevent our caring duties from wrecking our lives, our careers, our futures and making us an unwilling burden on the state when our caring work is over.  Not as a matter of justice – though it would be just. But to ensure the country designs a robust response to the caring crisis that is coming upon us.

And so I’m making no apology for repeating as Manifesto points, the five demands that we fulltime family carers want.  (No, need.) They are modest, affordable and practical.  And they are not extravagances; they are necessities. Me, I’m still surprised that you (and by that I mean all of you, not just those who run, or used to run the country) should care so little that carers  have done without these necessities for so long.

We are not invisible – nor should we be so inaudible.  It’s up to you to open your eyes and ears.

Proposal One: That we award Carers Allowance to all live-in carers, irrespective of age or employmentjust as DLA/PIP is given to those they care for.

Why? This would not only recognise (in part) the range and responsibilities of work carers do, it would mean many carers who can fit in a little work around their caring responsibilities would be able to do so without the fear of losing this support. (And as paid work brings in tax revenue, the state may well find it is compensated for some – maybe a lot – of this outlay.)

Proposal Two: The state pays into an occupational pension scheme for each fulltime carer to reflect what they might expect to have put in if they were working , say, an 80 hours a week at minimum wage. 

Why? This would give end-of-life value to all those years in which carers worked hard full-time (the expression is meant literally) for someone else’s benefit. Pragmatically, it would also be likely save the state pension benefit top-ups to the carer at end of life.

Proposal ThreeEstablish solid practical careers advice and training to help carers train for and sustain appropriate work within their environment (bearing in mind all the work that could be done this way if the will were there: teleworking, local working, working that can be supported around care needs).

Why? This would maintain skills, support a career, restore confidence and provide longterm independence for the carer. This is not just about fairness, though it is. Its about economic commonsense.

Proposal FourTake social housing back from the sem-autonomous situation it now occupies and ENSURE that it recognises the requirements of disability and caring in the allocation of rooms. When doing so the state must alsoENSURE that sufficient appropriate accommodation is purpose-built for the disabilities of the local population.

Why? This would mean that carers are not further worried by the constraints and logistics of, say, caring for tetraplegia in a first floor unmodified flat. If you fail to support the people with disabilities in this way, much of the additional stress is also felt by those who care for them.

Proposal Five: Finally, when allocating money to support carers, the state must ensure that money is ONLY given to organisations that offer properly targeted transport-accessible help that is fit for purpose  to everyone who needs it. It doesn’t seem a big ask  – but look around and see how many organisations do this. Stop regionalising carers or subdividing them into disease-specific tranches.

Why? You may not be intending to divide and rule, but that is what you’re doing. And you end up with organisations that are increasingly remote from the people they exist to support.

Who wins? Everyone!

Carers win, because they don’t feel shafted by fate and apathy and can see that their life prospects are valued and being protected

The cared for person wins. How guilty and how annoyed wouldyou feel to recognise that state policy is ensuring your condition may be assisting in the inexorable decline of your loved one’s life?

The state wins. It puts in an insignificant outlay and targets other resources better. In return it gets a more employable, less dependent population with greater chances of a productive outcome.

Best of all,it avoids the current shocking waste of a large chunk of the human capital of this nation. 

Carers, sign up to the Carers Virtual Strike. Without harming the person you care for, you can make politicians aware of what it actually costs to care. Not a carer? Show solidarity by adding your name to our supporters page and let us know that you care that we’re careworn