Fellowship Post #4 - affliction or adaption?

Fellowship Post #4 - affliction or adaption?

Language and assumptions, the focus of my last post, and their capacity to either choke or fuel our best efforts, have stirred further thoughts throughout September. When we ‘get it right’, I’ve observed how these factors add another dimension to our work within GalGael. Also, when we ‘get them wrong’ it’s noticeable and often equally revealing. Language in particular has played a role in;

  • infusing our decisions and actions with shared values;
  • hardwiring ‘power-with’ throughout our structures and processes;
  • ensuring connection and understanding;
  • defining collective identity and creating spaces where new personal stories are sculpted.

As we entered our twentieth year it seemed imperative not to take these and other implicit factors for granted. We initiated a year-long collaborative process to gather up the stories that define ‘us’ and sift through them for what really matters - the DNA that makes us an ‘us’. The process produced a document we call our Charter - a document that seemed more necessary than our strategic plan that had lapsed. Past plans, while producing much that was useful, were perhaps like policies rather inadequate at capturing some of the complexity required to engage with issues at the level of systems. Also the ‘intangibles’ that made us GalGael were somehow missing. The Charter’s words and carefully teased out passages attempt to define our culture - one that creates the conditions for health and self realisation.

The process involved a range of tools - paper based and online but also round the kitchen table, round camp fires, sifting through boxes of photos and clippings, scribbled on blocks of wood and stacked high or luggage labels - destined for some imagined future. A wall became our collective thinking space. Things were written up and torn down, scored out and underlined - constantly shifting as our thoughts took form. We now have a clear articulation of our values and working principles. They set out how we work together and recognise that sometimes that’s a bit of a stretch. They are also the non-negotiables that mark out our collective territory - the ‘terms of engagement’. These two sections are perhaps a little like Edgeryders Protocol and it’s interesting to notice that two of the Protocol’s ‘algorithms’ relate to use of language and the assumptions beneath these; “01. Be open, also in the way you think of ‘open’. 02. Never use rhetoric on your brethren.”.

A key juncture of the Charter process was hammering out our shared assumptions. Up until then, many of the sources of friction could be traced back to different interpretations of the context our work was responding to. Below is an excerpt:

For example, different interpretations would arise depending on whether you saw drug addiction simply as a ‘brain disorder’ or your perspective was informed by Bruce Alexander’s work on the ‘globalisation of addiction’ which points to addiction being a social issue arising from societal fragmentation and our surrounding environment.

Other work has influenced the explicit assumptions we’ve defined. The World Health Organisation’s social determinants of health - borne out in research I’ve previously referenced on the Glasgow effect and excess morbidity, researched links between sense of hopelessness, the role of chronic stress & cortisol levels. Collectively, they have contributed to a perspective where we no longer see issues such as addiction, homelessness or depression as a dysfunction of the individual. Rather they are adaptions of functional individuals to dysfunctional systems operating within wider society. It’s not your illness – it is ours. It is not your affliction - it is your humanity adapting to inhumanity of a world where our tools increasingly produce disutility.

A quote from Krishnamurti captures this best; “It is no measure of health to be well adjusted to a profoundly sick society.

Within GalGael, language also helps to define relationships and identity. When you are no longer a ‘service user’ or a ‘patient’ it’s easier to counteract the tendency people have to self-identify with the ‘issue’ they present with. We hear it in the way people describe themselves – rather than experiencing addiction they are an addict, rather than experiencing depression they are depressed - a strong sense of ownership pervades their descriptions.

There’s deep injustice in these self-limiting narratives. Mechanisms that build our identity are critical to counter the attachment that we can develop to these ‘wounds’. Mechanisms such as work, purpose and belonging are important as are our personal and societal narratives - re-writing old, limiting stories perpetuating core beliefs that no longer serve humanity.

Health as Commodity
I was once at a local strategic meeting of organisations planning for the roll out of a government employability programme. The programme was targeted at people with complex barriers, many of those health related. A number of times the phrase ‘stock in the system’ was used. Towards the end of the meeting, I was horrified to realise that they were talking about people - specifically unemployed people who fitted the programme criteria. This is a striking example of how severely the language of capital and business has polluted our thinking and in a way that can profoundly dehumanise others. It shapes relationships built around transaction - you sell me your poverty, your ill-health, your unemployed status so I can sell my labour to agencies and organisations who sell ‘positive outcomes’ to well-intentioned programmes, sadly usually funded by the EU and governments.

While this example is glaringly obvious - there are other more insidious uses of language that contribute to a pervasive degradation of the enabling conditions for health. Think of the words; intervention, procedure, treatment. Do they conjure up a sense of care as you read them? They are perhaps another indication of the way in which our healthcare systems are organised around the fundamental assumption that health is a commodity - a neat output ‘produced’ by treatments and policies of our grandest design. We organise our resources and our technology around symptoms, harm reduction, and illness, over-dispensing pharmaceuticals, mostly once the damage is already done. Our healthcare systems have grown ever more sophisticated - technological advancements are impressive - but in that advancement have they sufficiently challenged the fundamental assumptions on which they are is based - considering the question of what generates health over how we simply treat disease? Antonovsky’s work on salutogenesis is little more than a seven-syllable word in academic papers. Twenty nine questions measure his sense of coherence so we can benchmark data internationally but where are the indications that this is having an impact at the system level? Technological advancement continues - as it should - but to what end?

We are yet an industrial society perpetually organising ourselves around commodities and pseudo commodities such as data and knowledge. Our health and social care systems are increasingly pulled into this orbit but perhaps also struggling to respond to the sickness inherent in the system. The unintended outcome is the kind of codependent relationships that bind up our welfare systems in vicious spirals of impotent consumption and dependency. Open-source approaches have a role to play in de-commodifying our world, something that desperately needs to happen in sphere of care.

Economies of Care
The author Tim Jackson some time ago advocated a low-productivity economy in an article in the New York Times. “At first, this may sound crazy; we’ve become so conditioned by the language of efficiency”. He argued excessive productivity made no sense in the caring professions where time and attention were called for; “The care and concern of one human being for another is a peculiar “commodity.” It can’t be stockpiled. It becomes degraded through trade. It isn’t delivered by machines. Its quality rests entirely on the attention paid by one person to another.”. This for me is where care starts to raise issues that I’d refer to as the politics of time, perhaps the subject for another post?

In Right to Useful Unemployment, Illich describes three illusions which turn citizens into “a client to be saved by experts”;

  • congestion versus paralysis
  • industrial versus convivial tools; and
  • liberties versus rights.

All three illusions bear some relevance to the considerations of Open Care. In the first, he defines a ‘radical monopoly’, referenced in previous posts, that “paralyses autonomous action in favour of professional deliveries”. In the second, Illich argues that we should reserve the term ‘technical progress’ for new tools that “expand the capacity and effectiveness of a wider range of people, especially when new tools permit more autonomous production of use-values”. Open source, makerspaces and small-scale fabrication approaches to care, embedded in the community will achieve just this. Perhaps the third illusion is the most interesting. Here he makes an interesting case that rights simply protect access to commodities and are not to be confused with liberties. He argues that health encompasses both rights and liberties. “It designates the area of autonomy within which a person exercises control over his own biological states and over the conditions of his immediate environment. Simply stated, health is identical with the degree of lived freedom.” Illich suggests that it’s important to distinguish between the two - “rights give meaning and reality to equality, while liberties give possibility and shape to freedom. One certain way to extinguish the freedoms to speak, to learn, to heal or to care is to delimit them by transmogrifying civil rights into civil duties.” - ideas I’d like to give more thought to, especially in relation to the reconfiguring the role of citizen in relation to the role of state.

Ecologies of Care: organising society around health

I’d like to close this post by sharing a sense that we are entering or have entered an era of convergence and integration. By which I mean that the Industrial Revolution brought many advancements and improvements to standards of living. However, it also ushered in the atomisation of human society and cancerous forms of growth - language reveals the profound levels of disconnection and cognitive dissonance. As our modern capitalist economies emerged, life was organised around commodities and was achieved by a radical segregation of human life. Human labour was bought and sold - separating use-value from producer, labour was broken down into meaningless units of time - the maker separated from the whole process and so the end product of their labour, stripped of the dignity of their craft and of their tools. Work - an activity that used to be more closely integrated with the home - was extracted from communities and moved wholesale into factories and industrial parks. Employment monopolised all other forms of work. Education and health also became exiled to their respective silos of school and hospital, removed from the heart of communities just as older people, our elders, were evicted from family homes and communities to institutionalised forms of care. In the process we created the ‘profoundly sick society’ Krishnamurti references.

There are some indications that the main forms of organising life; work, home, school, hospital are converging and have the potential to generate greater sense of meaning, purpose and wellbeing through the reintegration of these spheres of life. The workplace stands to be re-conceptualised around meeting a much broader spectrum of our needs. New forms are emerging; home and remote working, open source technology, revived notions of the commons, small scale manufacturing that have the potential to re-organise our existence not around commodities but around health and self realisation. All forms that have the potential to return use-values to the makers and producers, return us to ourselves and each other - demand less separation between our professional and personal selves, our inner and outer lives and integrate our rights with our liberties. These forms would no longer depend on economies of scale but would favour localism and lend themselves to the ‘networks of small groups’ that Rich Bartlett of Loomio suggests in this article would be more effective than a mass movement in bringing about societal change at scale.

An increasing mass of people agree that long term human survival depends on us replacing the status quo with a fundamentally different set of behaviours and structures. I believe the root of that challenge is essentially cultural, and the best place to grow culture is in small groups..” The last sentence stands out for me - linking back to one of my original ‘research’ strands on the role of culture vs. policy. The Charter does a little to set out GalGael’s culture – not in the hand-me-down business terminology of a strategic plan but in our own language and our own poetry, so that our workshop and places like it, are no longer just countercultural liminal spaces on the edges of society but prototypes for different ways of being in society, prototypes for new forms of organising life not around commodities but around health and solidarity. Just as is happening at places like the Reef and those that will emerge from Open Village later this month through the Festival.


This has accents of deep truth. And I understand how you are doing it differently. Even the effort to state what you call “a culture” and I call “a human-to-human protocol of interaction” goes in the direction of enhancing process rather than producing outcomes, and anchors the process of care in the community rather than the organisation, or even the individual. I can even (barely) follow the argument about rights and liberties. Where I do not quite get it is that “we are entering an era of convergence”.

I am not sure I see this. In fact, I am not sure at all that I can perceive “the way things are going”, at any level. These things are hard to put a finger on. What do you see? Where are the harbingers of convergence?

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Thanks @alberto, perhaps it would have been more correct to say there are indications of at least the potential for greater convergence or re-convergence. And I agree, it is impossible to predict what is unfolding large scale. Harbingers would include for me the barriers that have become blurred between work and home since the heyday of office and factory, that the internet and home working have facilitated. 3D printing and other forms of small scale production like fab labs also play a role in that as does the new wave of ‘cottage industry’ that would include the growth of sites like Etsy and other forms of peer-to-peer commerce that also free more work from the factories. The potential to produce or buy directly from the producer has increased - around here at least the return of Farmers Markets in the past decade that I’d also see as part of this potential - more community gardens are part of that. I’d add to that stories of people leaving art school and university and starting up their own self organised places of learning within their communities. Perhaps even the difference in attitudes to home births and the existence of death cafes are somehow part of that convergence, the return from compartmentalised life. But also perhaps I’m over-stating something and am open to this being over-simplistic.

I struggled with the rights/liberties. My re-telling of it may not have helped (p78). It was partly the strong link Illich makes between health and liberties that interested me and beyond that long having had a sense that something did not sit quite right with me and narratives around human rights. I found the distinction that rights without liberties do not ensure freedoms helpful. Though again this would be open to further discussion.

Thank you @gehan , I’m impressed with your post and I read it with great joy. You have a knack for putting things in a larger picture and it helps me, as someone who doesn’t have the capacity at the moment.

I hope we get to discuss this more next week! Open Insulin is, for me, an attempt at prototype for the long term vision you describe. There is now a branch forming that looks at the infrastructure for stewarding the knowledge and production factors that go into the supply chain of the medicine.

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Thanks Winnie - it is of course inspired by the work of yourself & others through OpenCare. Open Insulin is a very necessary part of the de-commodification of health. Look forward to more discussions offline very soon!