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?