In my social media wanderings, I came across a blog named, “Utting-Wolff Spouts.” “Quite an odd name for a blog,” I thought, but decided to see what this person was all about. Turns out “this person” is really two people:
“Between us we have about sixty years of experience of being abused by the medical establishment. We were foolish enough to fall ill as teenagers so we are tough, strong and increasingly noisy. We are also scientists and consider the PACE trial one of the greatest scams. Enough of the psychogenic waffle and more of genuine knowledge and rigorous science.”
The purpose of this couple’s blog is to raise their voices about the “natural and social sciences; politics and social justice”; in particular, about ME, categorized in “The Politics of ME.” The “social justice” part of their advocacy caught my eye, as did the following two paragraphs in their post entitled, “Misrepresentations of Chronic Illness and Disability“:
“The work of countering misrepresentations of chronic illness and disability needs to continue, ideally more vocally than ever. There is strength in numbers. The more people with chronic illnesses and disabilities who dare to speak out in public, either online or out on the streets, at the workplace etc., the greater the effect regarding rectification of misrepresentation. We should not treat our disabilities according to the perceived norm e.g. someone using a wheelchair must be paralysed, rather than too ill to walk. The more people using wheelchairs as an energy saving mode of transport the better for the public’s perception of ‘who’ a person using a wheelchair is. Being the object of raised eyebrows and/or scorn is unpleasant but it will become even less pleasant if we comply by internalising those raised eyebrows and scorn. We have already paid a high price for an ‘offence’ we have not caused, by falling ill or being born without the normatively expected healthy, functioning body.”
“Being chronically ill and disabled is hard, yet here we are. It is an infinite, informal course in lifelong learning we did not voluntarily enrol on yet must endure. I embrace the multi-faceted knowledge and insights from the many sufferers I have had the pleasure, sometimes displeasure but that is part of learning too, to encounter. The only way forward involves actively listening to the experiences of others, collecting background facts, understanding the context… I also hope for tolerance, especially in times when there is so little of it. Most of all, I hope for sustainable change towards a more inclusionary society in which the chronically ill and disabled no longer feel they need to apologise for an offence they did not commit.”
One of the commenters, named Kelly, who suffers from Fibromyalgia, shared a link to her video. I am sharing her video because so much of what she says is very easily applied to many sufferers of debilitating diseases:
I encourage all my followers who are ill with, or advocate for, a chronic illness, to visit Utting-Wolff Spouts. Those who do not suffer, or advocate for, a chronic illness might find the blog informative and thought-provoking as well. The more people who try to understand what living with debilitating illness is about, the better, IMHO.