“I believe that withdrawal by a friend and colleague is not a private matter of friendships ending and people going their separate ways. The severely ill have nowhere to go. They run out of options for alternative lifestyles very quickly, and in times of austerity and ideology-driven policies, dehumanising experiences abound without the safe haven of the solidarity and social cohesion friends, family and work can, and normally do, provide.” Claudia in A Troubling Truth, 2016
Over the past few months, an analytical narrative emerged from the depth of my keyboard. Its slow emergence would not have been possible without the Centre for Welfare Reform, whose express aim it is to work towards social inclusion and a fairer society. The plethora of publications, presentations, and actions taken towards a fairer society who remembers its human values is impressive and I have now added my small contribution to it.
Along the way, disability bashing of my partner for using a walking stick occurred, a work capability assessment (WCA) of the same took place in which he was declared fit to work and four weeks later, miraculously and irritatingly arbitrarily, the DWP decided he was too ill to be placed even in the work-related activity group (WRAG). Friends who have too little money to do their weekly grocery shopping have gone hungry, the sick children they care for have nothing to look forward to but more institutionalised disability denial instead of a humane and inclusive transition into adulthood. Another friend was too skint to take herself to a work-capability assessment centre while yet another one with fatal heart disease faces eviction or, at best, an extortionate increase in rent she will not be able to pay, while her home-care situation is so bad she goes unassisted for hours, sometimes days. In the world of politics, we have seen the death of irony and, possibly satire (which appears to be the new reality), in conjunction with the fallout from the vastly irresponsible referendum.
Many I have spoken to ask themselves if we matter at all anymore and if there is even the slightest chance of being heard. I understand, and sometimes share, the feeling of hopelessness and a sense that while ‘anything goes’ nothing matters one bit.
But Social Justice and inclusion for ME sufferers matter more than ever now, all those fights for treatment, increased research funding, dignity, and adequate care, collaborative efforts from many different perspectives and personal angles do matter more than ever. People have been asking themselves what they can do in a time like this, with rampant racism, disability bashing, bigotry, and mendacity made acceptable by narcissistic politicians.
My answer would be to persevere and get together in the pursuit of social justice. Now is not the time to chuck in the towel and hide in despair.
The Centre for Welfare Reform, with the ever kind and intellectually curious Dr Simon Duffy at its helm, is an oasis of sanity, intelligence and goodwill. It is a shining example of what can be done.