Sunday, November 18, 2012

Shame, Stigma And Scapegoating Scroungers

Had I known two years ago what I know now I would never have started this journey. Someone asked me that recently, confidently expecting me to say 'yes, of course', startled when I said 'no, absolutely not'. It was a knee jerk reaction, as the lies dripped from politicians lips, leaving me sleepless and stunned. Nothing was planned, what happened was a visceral response to being demonised and labelled the scourge of all that made modern Britain broken.

In an unspoken, osmotic decision we stayed away from the policies which would effect us most as individuals. We picked out the proposals we considered most heinous; the idea that care home residents would have the money they use to purchase wheelchairs taken from them, that suggestion that sickness could somehow be time limited to a twelve month period, the scrapping of the fund used to match local authority payments for the care packages of the most severely disabled, the double speak used to convince the public that Disability Living Allowance, the benefit with a fraud rate of 0.5%, was typically claimed by golf club swinging fraudsters. Scrapping Severe Disability Premium was too emotionally risky to touch, much less campaign on, it being perhaps the most vital financial support for those of us with severe disabilities living alone and falling outside of stringent local authority care qualification criteria. Universal Credit was to be left alone, the intention of it good, but details so disastrous and contradictory it could only ever fail. Housing benefit cuts deemed too threatening to our own homes to investigate. So, without words we elected to fight primarily for others.

I didn't know then what I know now. That for every hard fought gain there would be more criticisms. That those criticisms would wound so deep because of those who slung them, our own community. That life sapping endless hours of effort would always be greeted with allegations of it not being enough. With a chorus of 'why aren't you doing this?' from those always first to disappear at the suggestion they could do that themselves. That bullying and intimidation would become rife, that those who shout loudest would only accept other voices if the words were those they deemed as acceptable.

I didn't know of the outpouring of pain and despair that would flood my life, from people in the most unimaginably dark places who saw us as a source of hope. I didn't know how the stories behind the statistics would eat away at me once they became people asking me for help. I didn't know, but I soon learnt.

Maybe it was the first message explaining that the author was stockpiling medication so that when the cuts hit them they would at least have a peaceful end. The many accounts of horrific childhoods, of unimaginable abuse for which I could do nothing but offer a piece of myself in empathy, understanding and recognition of pain. Or the day someone who couldn't tell me their name outlined their plan to take their life in public so that others might wake up to the dangers of this political blame game. The hours I sobbed once I understood what that really meant. Maybe it was when my friend Karen died. Or maybe the months before when she begged us for the reassurance that there was an answer. That others wouldn't suffer as she was. That the rejection, fear and shame her government inflicted upon her in her final months of life could somehow be stopped from happening to others. Maybe it was when patronising politicians thought patting me would somehow mitigate their relentless bullying.

I have forgotten when it was my life seemed to start belonging to others. Somewhere in the midst of all that it did. But, clearly I remember when I began to truly despair. Not when we lost the fight against the Welfare Reform Bill, not through the endless months when those supposed to oppose government stigmatised us as much as those in power. Not when I lost my voice, not even when I understood that it was never likely to return to what it was before.

The despair came somewhere amidst the shuffling of the private sector, sidling up with their admissions of having created much of this climate, their shamed confessions that actually, even they weren't sure this was what they wanted. That perhaps it had all gone a bit too far. It slotted in alongside the understanding that disabled and sick people would bear a full 10% of the cuts, and that that would be deemed to be not enough, that after taking £9.6 billion from essential benefits, another Welfare Reform Bill would be drafted in order that a further £10 billion could be slashed.

The devil as they say is always in the detail, and this detail could fit on a raindrop twinkling in the carefully positioned reflected light of dehumanisation. Sums that don't add up, cuts that cost more, access that doesn't exist, all these and more made their way comfortably into law. Scroungers are the scourge of society and must be punished, its what the public want, persuaded by the politics of hate and envy.

Social security once provided my literal security. The fear and vulnerability of decades of future degenerative disability and illness were once plastered over with the understanding of lifelong security. Of enough money to purchase food, shelter, warmth and stability. A stability which enabled me to contribute in whatever ways I could, a security which could be repaid by that attempt to contribute, to be a good citizen.  Gradually, intentionally, that security became known as 'welfare', something less tangibly understood, something far easier to remove without recognition than security.

With welfare we could become people different from you, people who are somehow at fault for falling ill or being disabled. People who are not actually people, because such things don't happen to people you know, and so long as it's not people you yourself know, well, then they aren't really people are they? Just a grasping underclass whose poverty is clearly well deserved, just shameless scroungers draining hardworking real people. 

I'm not sure when, but somewhere along the way I became ashamed to be British. Shamed by a government spouting polished, prettied lies about sub-humans. Shamed by the determination of a public all too willing to believe such fallacies.

Shame externalises those who have internalised it. It pushes us further from participating, adds chains to existing barriers, reinforces prejudice. These days I often wonder, is it shame that prevents the public from understanding the prejudice and poverty their government are perpetuating? Is it perhaps the shame of having turned away, having believed that sick and disabled people are somehow deserving of punishment instead of protection? Is it the four am fear, when dark thoughts of accident or disease cross all our minds? Is it because the only way to push away those fears is to pretend those things won't happen to you or those you love? Is it because that pretend game means you can reassure yourselves that you'll never be like 'them', that 'they' are not 'you'? Or is the shame really because you know? Know that there is no 'them' or 'us', that all people are fragile, vulnerable to forces of chance beyond any of our control, forces which can change life in an instant. Is the shame in knowing that, yet choosing to believe the comforting lie, that it could never happen to you? A lie whispering seductively that admitting to a need for social security threatens your safety, it's mere existence intrudes upon your need to believe it is something you'll never need. Whereas welfare, welfare is something different altogether, something that only others require, others who will never be like you, and if you don't need it, why would they?

15 comments:

Oya's Daughter said...

This is the first deeply personal post on everything you've been doing that I've seen in a while...and I know it cost you dear. I thank you very much for writing it.

Anonymous said...

Very powerful writing. Thank you and please take care of yourself. x

Anonymous said...

Whilst I agree with much of what's written here I have to take issue with the notion that people have not fought on issues directly affecting them. I have been doing just that. I have no wish to be a disability campaigner, it is sheer desperation that has driven me to lobby on a particular issue, hitherto ignored by much of the 'movement'. My biggest obstacle, and most revealing disappointment, has been the attitude of some who are, or want to be, professional 'disability campaigners' and use other people's work to boost their own profile or CV and gain credibility with people in authority. I have a life-limiting disease and am certainly not in this for any kind of glory; I won't be alive long enough. But those who are using the desperation of others to gain kudos for themselves should be ashamed. (I don't mean you Kaliya)

Ray said...

Thank you for what you have done over the last two years. 'No good deed goes unpunished' - sadly. But many have benefited from what you have written and done and you have said what many would have liked to say but may have felt they lacked the words.

Now - do you need some time for yourself? A break from other people's demands? Some time to get your strength and inner balance back?

Anonymous said...

Beautifully written. You are very much appreciated. You must do whatever you feel is right to heal yourself.

daisybeebee said...

What a moving piece of writing that must have been so difficult to write. You have, and continue to do do much , I do not know how you do it, you are truly remarkable. Please look after yourself.







Jayast said...

Powerful, expressive writing to which I can really relate.

I would add that I find it extremely painful when any group of people is stigmatised and marginalised. Immigrants is a word which I hear from a lot of people used as a label to dehumanise individuals into a supposedly unworthy mass in the same way that benefit "scroungers" has been used.

This use of easily identified groups of people to misdirect blame for widespread societal problems is so very insidious and dangerous.

As a disabled person with chronic but unfortunately invisible illnesses, I've now become paranoid for the first time in my life. I know of at least one woman on my street who doesn't like me and once yelled at me across the road that I wasn't really ill. I live in fear that she will report me for benefit fraud and I'll have to deal with that.

Thanks for all your words and efforts on behalf of us all, bendygirl, and please take some time to recuperate. Sending virtual hugs x

Anonymous said...

It is a real living nightmare which won't go away. First losing a fantastic, beloved career, a good income and health, so awaiting the day when DLA also removed, so that even the necessary visits to the osteopath and the essential prepayment certificate become an unaffordable luxury. Couple that with slowly losing the fight with depression, and uncaring medical people, and the possibility, nay probability of losing my old car, the lifeline with the outside world, and you'll understand why I'm another drug stockpiler. Yolo but didn't imagine this would be quite how things would turn out.

Anonymous said...

It is testimony like yours which will turn the tide.

Anonymous said...

Thanks for all your hard work Kaylia you're a star. Your video on youtube, drew me back from the brink of suicide and persuaded me to fight back. I myself am fed up of how people swallow government press releases. The tide does seem to be turning in our favour though and we must never give up. As you said yourself - alone we whisper together we shout.

Denice Hadfield said...

You touched my heart as you've have many others. At the moment I'm Lucky in that I don't need to claim as my husband works f/time ( Bus Driver for coach and horses Company) and somehow we manage! I'm partially sighted and also have asthma and Psoriatic Arthritis, which is now invading my hips. I've already had two cataracts replaced,one in each eye but have also got MD in left eye!
I now dread the day I will have to cope on my own, perhaps I should also start stockpiling with regards to the future, my late father always said that once you passed 55 you might as well be dead.
It seems we are now classed as "pensioners" after 55 and yet as we all know pension claiming age keeps rising.
The price of fuel keeps rising too and I thank God that all my children are grown and gone as Food bills seem to rise every week too.
Our old car is in ICU in garage at the mo-will cost about £3-400 to repair.
Would love to visit my youngest daughter who recently moved to Leeds from Newcastle due to change of Job-her contract ended!
We live near Stockton so cost of train to Leeds £33 return per person, coach approx £21 for 2 of us return. if the car was working about £30 return!
No matter how you become Dis-abled through birth or otherwise it's not something that any sane person would choose to be and most folks don't actually want to be dependent on Anyone!
Sadly tho' there are folks out there that will use the system to their own advantage thus billions of pounds have been falsely claimed as shown in a BBC program called "Saints and Scroungers" which showed that for the genuine case there are also the Scroungers who believe for some reason that society(Us) owes them something i.e freeloaded money!
Not that they stop to think where the money comes from or who will suffer the consequences through THEIR actions.

Keep the Faith indeed
just look after yourself and take a rest
doubtful that you will of course,
hugs

feege said...

It makes me so sad to see sick and disabled people struggling so much with the benefits, feeling bullied and frightened. I KNOW my stomach was seriously adversely affected last year when I went through it. It took over a year to get sorted and they're about to change it all again. Sadly they've made me so sick they've made me even more likely to get the benefits anyway. It is the most counter-productive 'cost-saving' exercise ever. The switch from IB to ESA must have cost hundreds of thousands without even adding in the additional costs of Appeals which have been won and should never have been necessary. Now they are going to spend more money changing it again. Yes, they manage to kill some of us off, but worse they make us more sick, less likely to be able to work and therefore cost the state more. This is quite obvious - so clearly their intention was never cost-cutting but the ritual humiliation of sick and disabled people as a threat to the rest of society, to keep people working for low wages even when they are sick and ultimately to divide and rule. Thankfully, through the internet mainly, we have found each other and our voices and are surviving and fighting back where we can. To all my sick and disabled friends remember WE are all in it together and will stand, sit and lie side by side and we WILL NOT judge each other and we will not be bullied. Don't be defeated or depressed.... be angry!!!

Anonymous said...

and all this from a nation with an Equality Act on its staute book

Anonymous said...

" To all my sick and disabled friends remember WE are all in it together and will stand, sit and lie side by side and we WILL NOT judge each other and we will not be bullied. Don't be defeated or depressed.... be angry!!!"

tell this to Disability Rights
they do not talk for me and they are appeasers.

Jessie said...

Hi Kaliya,

You don't know me but I feel like I know you at least a little.

Your blog is powerful and should shame anyone who still does not know or care what is being done to the sick and disabled in their name.
I hope I can repost it for others to read?

I know you have personally paid a high price for all that you have done. I hope you may get some comfort from knowing it WAS worthwhile. Certainly for me, watching your videos right at the start and reading your posts helped turn me into a campaigner too. Unlike you I cannot be in the public eye but I most certainly work away where I think the message will get out. And it is. Painfully slowly, too late for many and at enormous cost to those of us who are ill enough we should not be doing this at all. But we do it because we see a danger to this country and its very fabric that is a dangerous path to an unspeakable destination. You were the first "campaigner I came across and I think about you practically every day and hope you are coping. I think you alone caused many to take up the fight in little or big ways, so I hope you can realise that although you have lost a lot, you are a brave pioneer and will be remembered for what you have done an still do.You campaign with a selflessness and wit that puts thousands to shame in this country and I share your despair that far too many wait for someone else to do it for them while they continue with their lives, practically oblivious to what is heading their way.

You are right. I often wondered why you didn't campaign on the issues that would most affect you, such as the loss of the severe diability premium. It affects me too but most disabled are not bothered to fight for it because it doesn't affect them. It is scary enough to face an incapacitating illness without having to face it daily, alone. No one there to even bring so much as a glass of water let alone a meal when bed bound. No partner to provide a consoling hug. Knowing there is no back up if the state fails us. Those disabled with partners, chilren etc really should think more about those who cope alone, day in day out, perhaps with some help from a stranger carer.Not the same thing as a family member who is on your side at all.
I just wanted you to know Kaliya that there are people out here who hold you in their prayers, even if you don't know who we are or where we fight.

You have a desire for justice in you Kaliya,sadly lacking in too msany these days, who care only for self. I hope you can rest and recover some strength. Then perhaps you can start the fight for yourself and your safety. Just ask and there will be those of us who will fight for you too.