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The times in which the powerful and the comfortable could decide what is best for lives about which they have little comprehension are passing. Our family saying for this condition was 'VWTGTC'. It stood for 'vicar's wife taking gruel to cottagers'.
Even where intentions are good, this attitude is always in danger of wearing blinkers and teetering on the edge of condescension. Where it represents a grudging minimalism, it is entirely without the power of change, let alone transformation.
As the world celebrated International Human Solidarity Day, and the signatures on the #WOWpetition mount, the emerging power of “nothing about us, without us, is for us” comes centre stage as Simon Barrow writes here : 'Disabled and sick people should shape policies that impact them' http://www.ekklesia.co.uk/node/17655
Sickness and disability are another country to the hale. It is easy to observe, albeit with sympathy, far harder to enter where you do not have experience. Last year I had a bad accident. One moment I was a fit and healthy woman running down a hill. The next, I was lying semi-conscious in the road with multiple fractures. But I was one of the lucky ones. The journey back to wholeness was long and trying but everything else was on my side. I could work from home and a multitude of editors and publishers were wholly accommodating of my reduced work rate. My partner was in work and supportive – had he been stricken or made redundant at the same time, it might have been a very different story.
The frustration, anxiety and mild depression which I underwent during this time were salutary. I was compelled to enter into a physical and psychological landscape which was unfamiliar to me. I am grateful to have been left with only minimal impairment, but it is sufficient to remind me that strength, health and capacity do not come with a lifetime guarantee.
Long term incapacity carries all these burdens – to an immeasurably greater degree than anything I had to bear. It is almost always accompanied by a precarious financial situation because people whose capacity to work has been severely restricted over many years are unlikely to have been able to build any significant savings. Long term pain or fragility easily isolates. We may all know individuals who are described as 'wonderful' and who rise above their difficulties with extraordinary grace. They are good to be around but it is not rational or fair to take them as a required standard. For a great many people, the mental and emotional damage of illness or injury is huge and their social 'acceptability' may be severely diminished.
No one should have to live like this. We all need security, love and companionship. For those whose physical or mental condition makes every activity more difficult and severely restricts choices about so much the more fortunate take for granted, those basic human needs are unaltered . But the manner in which they may most effectively be met may be very different from the assumptions of prosperous and able-bodied policy makers.
Those policy makers must listen and learn if they are to be humane legislators. And if people with disability, illness or mental health problems are to live fully, rather than merely exist on the edges of a society which is being encouraged to see them as problems at best, and malingering scroungers at worst, they must be heard and their expertise utilised.
Sickness or injury can strike anyone at any time. Solidarity with suffering and respect for its
emotional and mental experiences requires humility if we are to order our common life with integrity and justice.
Please sign the petition http://www.ekklesia.co.uk/node/17653
© Jill Segger is an Associate Director of Ekklesia with particular involvement in editorial issues. She is a freelance writer who contributes to the Church Times, Catholic Herald, Tribune, Reform and The Friend, among other publications. Jill is an active Quaker. See: http://www.journalistdirectory.com/journalist/TQig/Jill-Segger You can follow Jill on Twitter at: http://www.twitter.com/quakerpenTweet