The nature of participation and what makes a community.

It’s difficult to know how to participate when your ability to focus is extremely limited. How do you get involved and sustain that involvement for any significant measure of time when getting out of bed or managing to get something to eat is the most challenging thing you’ve ever done…every day.

It’s the crux of the problem… isn’t it? … Its something that has stifled the voice of the long term chronically sick and disabled for generations. Historically the sympathetic fit and the disabled fought for the rights for themselves and for the rights of those who were, too disabled or too sick to fight for themselves. How has this changed or more importantly how can we embrace that change?

For the first time people who can only manage to campaign for short periods of time are doing so, insomniacs are campaigning in the wee small hours… The chronically fatigued and those with chronic pain campaign in short burst’s… The housebound only bound in body, exploring the world of the net getting the word out across the globe about what’s happening here. There will be nowhere to hide for those responsible when the reckoning comes, as it inevitably will.

So here we are with the technologies at last to get involved in a way that has finally solved the disability campaigners and activist puzzle. A technology that made campaigning possible for those that have lost so much. Their health, their mobility, their ESA, their friends, their families and their lives… suddenly find themselves with a voice. A voice that began slowly encouraged by Facebook groups like DPAC and UK Uncut among others. Which was amplified by the twitter campaign that launched the Responsible Reform Report. These campaigns have led to a blossoming of sick and disabled people wanting to be involved whether by direct action in their communities like the Worcestershire campaigners, activists and disabled people who recognised the danger and came to the various groups within the disability community and said we need help! Or the vast numbers of online campaigners and activist’s that by dedicating what little time they have to campaigning trying in desperation to get the public to understand what is happening to thousands and thousands of people who are having they’re only life line ripped from them. Sue Marsh calls this “bed-tivism” I call it ‘despite-tivism’ despite everything we fight, because we have no other choice.

We have the tools and I’m not talking about Facebook or Twitter I’m talking about the hundreds of individuals that create the disability community, Twitter and Facebook are just technology. The community IS the tool we need to change the way people view us forever.

So how do you harness that desire how can the disability community work together to change things for the better not for one campaign or one report however successful, not for one protest but for the long term…? What are the tools that are required to take our individual participation and transform it into a community wide voice that will educate a generation in the language of disability, so this demonisation of vulnerable people can never happen again? A community so strong that no discriminating voice can overwhelm us.

Well, that requires several things, firstly a recognition of our own possible part in that, were we complacent? Had we become so used to letting others fight our battles that we forgot to fight for ourselves? And if not, then we should celebrate the achievements of disability campaigning past, and look at how to modernise it to be effective long term in the new age of modern activism.

Secondly it requires us to see our community for what it is, a gaggle of angry, frustrated, frightened, wounded people that are working together through sheer necessity, and like any diverse community we, in fight, we don’t agree on approach, we dislike each others methods and we don’t want amateurs paddling in hard won paddling pools. But we are also strong, determined, diverse in our approaches which covers more ground, Experienced in a vast array of life experience that brings fresh eyes to how things can be done. And at last we are vocal not just in a holding placards, chanting slogans sense of the word but in an intelligent measured responsible sense of the word to. If for a moment the different groups where blurred in to one community and we could see the effects of that community I think even our Government would be worried. And although what is happening is having an effect how much more effective would it be if it was one community with lots of arms rather than lots of groups that have their own branches of the community?

Thirdly and the hardest of all is the possible long-term goal, one that should move beyond only welfare. Because welfare is just a symptom of a more insidious truth, people who have not experienced disability or chronic ill health at close range do not understand us.  That is the real battle, the government would not be getting away with murder if, every citizen knew a disabled person well, if their children knew us. By which I mean If you cant stand as a MP candidate help find someone who can and support them, if you cant get involved in your local council help find someone who can and support them. Helping those with disabilities that can be more active and more visible in the community such as working in the WI or volunteering to help in after school clubs, is as vital an act of campaigning as the ones that have blossomed on line and should become part of the next phase of disability activism.
Quite simply this is the nature and level of participation we need, to unify our support for each other to create the possibility of participation in the wider community by harnessing the tool that is the disability community to educate a generation.

Working together community evolves…

Just my ramblings on it anyway… Dxxx


6 Comments Add yours

  1. maggie says:

    well done and well written, Debbie.

    1. ravenswyrd1 says:

      Thank you Maggie Just some stuff a friend and I have been thinking about for awhile now… Just decided to pop it down… Dxxx

  2. jaynel62 says:

    You’re spot on with your description of just what our community is, I love being part of a gaggle! But I have to admit to grudgingly looking back to my days of actual activism.

    Great piece Dxxx

    1. ravenswyrd1 says:

      I have no objection to actual activism for those that can i just think for those that cant other forms of participation should be availiable… And i think they need to be for the long term… Dxxx

  3. sue mccafferty says:

    Great piece. And so right about the fact that most people who are lucky enough not to have any illness/disability so often don’t get what we’re trying to do and just how much it takes out of us. My illness won’t change, whoever is in power, but it would be nice to just take care of my health and not have to be fighting for my right to the basics such as housing and money for bills.

    Love from suzieq fellow Spartaci xx

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