Some years ago there was a strong debate around whether the social model of disability was flawed because it saw all discrimination as created by society and, it was claimed, had no answer for disabled people who had personal experience of chronic pain and fatigue. There is a link to the initial discussion below.
What is it that society must do, it was asked, to remove the barrier of chronic pain and fatigue and thereby enable such disabled people’s full participation in society? Society could do nothing here to help, was the suggested answer.
In that debate, part of the alternative answer was that the social model is just that, a model, it is not the reality itself. As Vic Finkelstein said many years ago, a model of a house will vary depending on the context, such as being in Africa or the Arctic, but they are still both models of a house.
Similarly model airplanes are useful in explaining how a very heavy aircraft can rise up off the ground into the air, but the models are not the planes themselves, just a way to learn about flying and to understand the concept better.
Which is true, if a bit neutral. However, on reflection, I want to suggest here that the social model does have something more positive to say on chronic pain and fatigue.
This reflection is prompted by reading a book written by an American doctor who has become very knowledgable on pain and fatigue. In his book, The Polio Paradox, Dr Richard Bruno has summarised the lessons he has learnt from spending his time working, with a team, with around four thousand disabled people. People who have come to him with increasing pain and fatigue, many at the end of their tether, especially when they have been ill advised for years by other doctors, physiotherapists and the like.
The book is around 300 pages so this article will have to be just a summary without many of the useful details he adds to explain his key points.
The first interesting point, which you don’t realise until you are near the end of the book, is that his lessons apply to people with many different impairments and underlying conditions. His starting point is PPS – post polio syndrome, which he calls post polio sequelae – and how people who regained a significant amount of mobility in the weeks and months following their acute infection now find, many years on, a level of chronic pain and fatigue that they were never prepared for and can find no answers for. But he shows the underlying links from polio to mechanisms present in people with ME (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), cerebral palsy, spina bifida, and a number of other causes of impairment.
He also comments strongly on the levels of under-diagnosis of pain and fatigue by doctors, and on the uselessness and harm typically done by prescribing painkillers and anti-depressants.
For those interested in the biology he explains how enteroviruses are now better understood for their selective destruction of key receptors on motor neurons in the spinal cord but also travelling up into the brain stem. For many people the moment of the acute infection, often in their childhood, felt no worse than a heavy cold if it was remembered at all. It certainly seemed not serious enough to call a doctor. But the damage was done.
The scale of destruction at the time of the acute infection can remain hidden until later years, when basically the remaining small number of unaffected neurons, for years over-worked and uncomplaining, eventually become totally knackered and give up the ghost. Not quite how he explains it, of course, but you get the drift. Different conditions have different pathways, but the end result is mostly the same.
This point is important because so many people with chronic pain and fatigue have been dismissed and ignored for years. They have been told by many medics it was in their mind, and have been attacked by a hostile press with insults such as yuppie flu.
But more than the underlying biology, he has much to say on how society has responded, and mostly how it has not responded, starting with twenty million polio survivors around the world who have been left to fend for themselves.
Again, a long and rich story is told very briefly here. The core message from the book is as follows:
- Stop doing everything you can. Everything. Which is hard.
- Use absolutely every assistive device you can, and all the time.
- Understand how you have internalised repressive messages: lazy bones, no pain no gain, use it or lose it.
- Understand the social messages that reinforce this repression: hard working families, shirkers.
- Look for all the personal assistance you need at work, at home, for leisure and for a social life.
- Understand how fickle public sympathy is, often based on fear and pity, such as the March of Dimes polio fundraising in the USA where public support collapsed in the 1950s as soon as a polio vaccine meant parents feared less for their children’s health.
- Understand that the classic rehabilitation exercises that you have trusted to help you may actually make your condition worse.
- Understand that your cold intolerance is not about being soft or selfish. Avoid draughts and cold surfaces. Only swim in water that is over 30C.
Now imagine what a society would look like that removed such barriers and triggers associated with chronic pain and fatigue. A society where the proper support and structures are in place to address the issues of chronic pain and fatigue as far as we know is possible.
This society would include new arrangements to meet the needs of people with chronic pain and fatigue, for example,
- personal assistance based on people’s needs and not on rationing,
- a widespread provision, use and acceptance of assistive technologies,
- a culture where over-achieving isn’t demanded and where people’s best efforts are not belittled,
- a health care service that understands the many and complex causes of chronic pain and fatigue and understands how to best respond to people’s needs,
- workplaces that similarly best respond to people’s needs such as restful breaks and workload sharing, and
- an understanding that the need for body warmth is essential and not a luxury.
However, when the UK’s Local Government Association estimates that there is a £2.6 billion shortfall in social care funding this year, and that more cuts are coming, we can safely say that the social model has something useful and radical to say for people with chronic pain and fatigue.
Finally, it is important to remember that the social model is not a cure that makes everything different go away. People will still have their impairments and conditions, some stable, some progressive. The social model challanges us to constantly check, what is the very best we can all do as a society so that everyone with an impairment is included.
Link to the debate: