Soul on my Skin #TBofBTT #TBofB

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’. As the chief said this, my dad leant forward and said “like yours are for you”. And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them. 

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body. For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again. 

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more. 

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying. 

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be. 

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

By Melissa Smith, @queeniejelly - TBofB

Originally posted here

Cuts to Social Care

Following the article on this blog about Disability and Social Care, it has emerged that spending by councils on adult social care has been cut by £1bn this year. You can read all about it as originally posted on the Community Care Adult Services blog:

We finally have some concrete figures on the toll take on adult social care by the government's front-loaded cuts in public spending. It comes from the Association of Directors of Adult Social Services who have found that spending by councils on adult care has been slashed by £1bn from 2010-11 to 2011-12.
If this equates to net spending (i.e. spending by councils that excludes the income they receive from service users) this will equates to a cut of 7% (in cash terms).

Adass, who has surveyed 148 of its members (the vast majority), said that 70% of this cut had been absorbed through efficiency savings and service redesign but the remainder equated to reduced services i.e frontline cuts.

As part of this, it has also round that 13% of councils increased eligibility thresholds last year - most of these raising criteria from 'moderate' to 'substantial'.

According to Adass's figures we have
6 councils on critical (4%)
116 on substantial (78%)
26 on moderate (18%)

Wonderful Weekends

Times are tough for sick and disabled people. A constant onslaught of welfare 'reforms' combined with frequent media outrage about benefit scroungers and increases in disability hate crime mean that many of us feel we are literally fighting for our lives. This harshening of attitude to state provided support not only depresses and scares us but for many of us, means that we fear being seen doing anything 'nice' lest someone should decide to report us for fraud. On blogs and twitter we've discussed 'disability normal' to try and help the wider public understand we have the same hopes, dreams and desires as everyone else, we just have additional pressures not shared by a still able world. At Broken of Britain we've all pretty much worked ourselves into the ground, not because we're truly fit for work but because we recognise that our backs are against the wall and if we do not win this battle, we will face fighting a far greater war for our very existence. Over the past week or so the core BoB group have been hit hard by the health consequences of our work, one has had increased heart problems, another the first signs of a Crohn's flare, one is still recovering from surgery, another still unsure if they'll be homeless in a few weeks and I'm still getting over the breathing problems from a few weeks back.

The flipside of this 'back against the wall' attitude is that sick and disabled people tend to grab life with both hands (metaphorically, we tend to be a bit crap on grip strength) and on the occasions we're well enough, we LIVE. I've just had the busiest, lovliest, happiest weekend I can remember in years, more years than I care to think about. It was packed, and I'm in horrible pain and exhausted, but the happy memories will keep me going for years to come.

Friday started badly. I opened my inbox to find another email from a person disabled by mental health issues explaining that they had already made one suicide attempt and were planning another once their WCA assessment letter arrived. I sobbed down the phone to a friend in impotence and sadness that a Britain, once so great was putting this kind of pressure on it's own citizens, more so when I heard a journalist contact on twitter had also received a similar message that morning. The rest of the day is a bit of a blur, but the time spent with my neighbour's two year old dripping bubble mixture onto my head was just the medicine I needed to recover from such a sad start to the day. The rest of the day is a bit blank, I remember lots of pain and sleepiness and not the skype conversation I had with a friend - most of which didn't make sense when read back. Perhaps that's why, no matter how hard I try I have no recollection at all of Friday night.

Saturday was a beautiful morning. To chase away the need to vomit I went for a deathwalk, setting off thinking as I was in the best part of the month hormone wise I was looking pretty fine. Until my physio neighbour chased after me to express her horror at how floppy my hips were looking and warn me not to go too far. I made it, without need for rescue, but did need two hours in bed afterwards to recover. My upstairs neighbour had asked me to go wedding dress shopping in the afternoon and I was SO excited and honoured she'd asked me. When we arrived at the wedding dress shop, as so many wedding places seem to be, it was upstairs and of course there wasn't a lift. Fortunately the stairs were low rise, with landings in place every few steps so my neighbour and the hand rails got me up, and my bottom got me down. There's a time and a place to make a fuss about the lack of access, and shopping for the biggest day of someone else's life is most certainly  not it. Several dresses, cups of tea and tear stained tissues later we'd found the perfect dress and headed home for the early tea at the pub we'd planned.

We walked and BendyBus'd along the promenade to the busy pub and enjoyed our meal, particularly the 2 for 1 deal the pub run meaning it only cost about a fiver a head, then walked and scooted back to our local where we sat outside with the dog and even I had a drink. I couldn't finish it because it made me feel sick, which is probably fortunate as even that tiny amount of alcohol produces wildly inappropriate one liners to come out of my mouth before I know what I've said!

We headed home around 9pm and sat in my back yard wrapped in blankets listening to music, talking, smoking and drinking. Somehow a gnome ended up looking like it was butt fucking a plastic cat and the snails were holding a full blown festival which we all found highly amusing. Ok, I did. The others just found my snail festival overexcitment highly amusing. By around midnight we all crawled off to bed, and even though it took me two hours to stop shivering and frequent waking later due to being so cold under the two duvets and hot water bottle I'd piled on my bed it was well worth it.

Pain woke me early and feeling rotten but I was so excited about the prospect of my back yard getting the 'ground force' treatment I tuned it all out and focused on that. We loaded up the BendyVan with my wheelchair and headed off to the supermarket and garden centre to stock up with food and plants, intending to have a BBQ later on. I'm so used to having to do things alone that every time I'm with people who automatically support my disability it comes as a huge shock to me how easy life becomes. If I'd wanted to go to the supermarket alone, even with the mobility scooter it would have taken up the entire day and left me exhausted, but with friends to push me and help out I was able to do it all and still have the energy left to do some planting. My friends did all the hard work gardening, lifting, sweeping and sorting while I potted a few plants. Half way through I dislocated my ankle and wobbled wimpily in the middle of the yard until someone sat me down, helped me take my boot off and hung onto my foot as firmly as they could so I could relocate the ankle. It only took a couple of goes but was quite upsetting for the others.

The garden was transformed within an hour or so and we were exhausted, happy and excited for our BBQ. Which was when we discovered the other neighbour who'd been dispatched to buy BBQ's and meat had got a bit puddled in the supermarket and thought we were buying them. Not deterred by this lack of BBQ or food we combined ingredients from various freezers and kitchens and my upstairs neighbour used my kitchen to make a fantastic meal. We sat in the newly sorted out yard, with candles, the gnome shrine* a beautiful meal and wonderful company.

It might not seem much to you, a weekend spent close to home, a meal in the pub, a drink and time with friends. But for me it was wonderful, exhausting, exhilhirating and oh so very special. So special that even the fear of being reported for benefit fraud because I was actually enjoying myself couldn't spoil it.


*Really, don't ask. Apparently we're getting a Huddersfield Town gnome, but the inappropriate porno gnome show seems to have taken off big time! 


Originally posted here

A Note To Disability Sceptics

It might sometimes seem as though disability campaigners are asking you to take an awful lot on trust.

We tell you that we are not opposed to all welfare reform, yet only write about the parts we disagree with. We point out that genuine support to find rewarding employment would be welcomed, but ask you to believe us when we say that it is the system put in place that fails us - and you.

You watch TV programmes and read newspaper reports that claim virtually all on sickness benefits are "scroungers" or "skivers", yet we keep pointing out that in fact fraud is the lowest of all social security benefits at just 0.5%. Perhaps we should spend a little more time acknowledging that many people on sickness or disability benefits would like to work and would welcome the chance to try.

If you happen to be aligned to a Conservative viewpoint, it's hard to continually hear that a policy is not only chaotic and mis-informed, but potentially dangerous and cruel. As a Labour leftie, I know all too well how frustrating it is when you have the best of intentions in government, but face a constant wall of opposition. If you believe passionately that work is the best medicine, it's hard to hear that for some, that just isn't the case.

Nonetheless, when something is wrong, it's wrong.

Employment Support Allowance (ESA, the replacement for Incapacity Benefit) was wrong when Labour introduced it and it's just as wrong today. It was based on flawed assumptions and spurious research. In 13 years, it was the first thing I openly opposed my own party over. It was clear that it would cause great suffering and injustice and I simply could not let it go unchecked.

Worst of all it might just sound like self interest : "Don't cut our benefits, don't make us pay."

Some ask how I  (and my campaigning colleagues at The Broken of Britain ) manage to write so passionately or find time to research our work, yet don't take a "real" job. Well this is why.

We are making ourselves (more) ill. We are pushing ourselves too far. Daily, we take on too much and fight too hard.  Yet at some point a kind of fatalistic "nothing left to lose" attitude crept over us. We don't have wealthy supporters or powerful voices to fight our cause. If someone wants an "expert" for a radio show or newspaper column, it has to be us. There is no-one else. If someone wants an article within the hour on a particularly pernicious benefit story, we have to write it. There is no-one else.

But we're doing it for you too.

Sickness or disability can happen to anyone at any time. You might think that you would cope, work on through, but we who have been there know that sometimes there comes a time when you simply can't. We know that life can change in a heartbeat. That cancer or car accidents, disease or despair can strike anyone at any time - from the CEO who has a breakdown that he thought could never happen to him to the student diagnosed with leukaemia.

We know that skis can come lose or motorbikes can spin into ditches, crushing our hopes for the future as surely as our limbs. We know that defective genes or delinquent organs can lurk as surely in a lawyer as a clerk.

And we know, through terrible experience that when, God forbid, the lottery of life comes calling, you have a right to dignity. Not wealth or special favours, just a little basic provision and a knowledge that we live in a society that won't let you fall.

So, we have to fight. We have to be controversial. We have to grab your attention. We have to find ways to have our voices heard by a media and political class who largely don't want to know. But I just wanted you to know that we're fighting for you too.

Originally posted here 

Services for Disabled People and Local Government Funding

The funding of local government in England has been cut by 25%. Cuts to spending will also hit local government funding in Wales and in Scotland, As explained in a previous blog, these cuts are having a severe impact on social care services offered by councils.

This impact may well lead to higher future costs as people denied access to care services suffer from this and end up on a higher rate of benefits or costing the NHS simply because they were denied basic help when it was needed. Community Care published a story last Thursday which highlighted the fact that this is a more general problem.

The article says:

Disabled people could be stranded in unemployment because jobs support services are being devastated by local authority spending cuts, a study has found.

More than half of supported employment providers are facing local authority funding cuts of at least 15% , according to the poll by industry body the British Association for Supported Employment (BASE).

A quarter of providers said they were facing council cuts of between 50% and 100% prompting some to predict that their service would close.

Others were making redundancies and stripping back provision even though caseloads were rising.

The problem in general is not about the local authority spending cuts. although they undeniably make the situation a lot worse than it was. The bigger, but less obvious, problem is that services for disabled people come from three pots of money: DWP spending on benefits and support, NHS and health-care spending, and local government funding.

The three pots of money are not linked in any way so that if, for example, local authorities cut funding for employment support services and thereby force the DWP to spend more, the higher overall cost will not trouble the local authority. Likewise, a disabled person made ineligible for care may well fall ill or be injured, in which case the NHS picks up the tab - probably costig many times more than the original care package.

Again, the higher overall cost does not bother the local authority as they will have 'saved' from their own pot by passing the buck to other pots of spending. The above does single out local authorities unfairly, as everybody does it to some extent. DLA reform is a prime example, with the DWP arguing that state-run residential care homes duplicate services so that the mobility component is not required for residents - shifting the costs away from the DWP.

The same is true of many provisions in the Welfare Reform Bill that affect disabled people. The game played between these spending areas must stp. Each individual spending area tries to cut cost, although this may lead to a higher overall cost. More importantly, it is disabled people who lose out when these games are played, being shuffled around like chips on a gaming table.