After five years I started to dream about working again. At various times I tried New Deal for Disabled People and Pathways to Work. They would talk alot about CV's and two tick schemes, but when I asked about professional retraining or whether they had links to employers willing to employ home workers I would be directed to photocopied job adverts for jobs I was physically incapable of ever doing. So, I wrote, I managed my condition, I learned all I could about anatomy, physiology, physiotherapy, speech therapy and I worked at it. Every day.
I learnt I could manage my symptoms if I listened to my body. I learnt that I could be happy, happier in fact than many of my able bodied friends living the life of career, marry, babies that like every other middle class girl I was supposed to grow up to do. I learnt of my community, our history, our common challenges and our differences. I learnt that I could pay forward the support which had been offered to me by a community of strangers. That in doing so I could feel worthwhile, like I was making a difference and contributing to society. I learnt that I could survive the bureaucratic insanity of the NHS and welfare state. I learnt never, ever to trust welfare advice after months of receiving the incorrect benefits plunged me into debt. I learnt to learn the rules myself.
It started to feel as though there was light and hope. And then, the Coalition government were elected. I learnt that they intended to target sick and disabled people's vital support in a way more extensive than any of us could have dreamed. Along with a tiny minority of our community I learnt that this targetting was dreamed up by people with no concept of living without vast resources, no idea of the reality of life with chronic health problems or the huge, yawning chasms in the existing 'support' systems. I learnt that these decision makers were clueless, which made them callous and cruel. Cruel enough to even consider condemning some severly disabled people to their beds.
Over the next two years I learnt exactly what determined, angry and organised people can do. I learnt that those of us who've learnt how to pick ourselves up from the darkest of places, over and over again, will always find a way to do so again. I learnt a sense of fierce protectiveness for others in my community, for those more sick than I, for the children yet to join us, for those so utterly voiceless that being tortured is their daily experience .
I made new friends and learnt how powerful a bond people can form with each other through the commonality of exclusion. We learnt new skills, politics, strategy, PR, policy and precedent. We had all learnt that most basic of lessons; that its always worth a try. With this in mind we ran national campaigns, lobbied parliament and Peers, developed our own media, rationalised and reasoned. When we were ignored I learnt we could come together to produce our own evidence.
The Spartacus Report was born of desperation and tears. Speaking to Sue on the phone she mentioned we should probably pay more attention to the DLA reforms. I cried. And cried, and cried. With exhaustion and hopelessness. And so we agreed. The one with slightly better health than the other would lead, and the other donate brain time every day. And so we did. Others joined us, all of us working desperately, primarily from bed. We had no idea we were creating an entirely new form of protest, a 'from bed activism' or an entirely different, radical new way of working for sick and disabled people. We had no idea because we could barely get through each day.
I, quite frankly, have a life. I still do the things I enjoy. I smile, and I laugh. I get too drunk. I cry. I find joy in some things, sadness in others. I have hopes and I have dreams. I have love and I have sex. I have my life. I've lost ambitions for my career, I've lost the hope that I will live a "normal" life. I'm afraid of certain things in the future; missing out a sentence in my ESA50 reducing my income to £0, or living in poverty. What I thought my life is, and what I thought it was going to be, forever changed when my condition was recognised. My life wasn't destroyed or stolen; it was changed.
People with disabilities, from every walk of life, 'contribute' to society. This can be small unpaid contributions to scientific endeavour such as mine; it can be the incredible campaigning of the Broken Of Britain, Sue, Kailya and that gang, it can be the people in local and national government (e.g. Barrenness Grey-Thompson), or it can be the child who brings a smile to their parents' faces.
We disabled people have worth, and we most certainly have "lives". You think otherwise at your peril.