The smallest unit of learning is a feedback loop. Power is the privilege of not needing to learn. The dynamic process of life is best understood in relational terms. At human scale, all healthy relationships, independently of the level of intimacy, are characterised by the maintenance of de-powered dialogue – by a mutual deep desire to understand a precious living being.
Anthropocentrism
The smallest unit of learning is a feedback loop. In the physical world feedback loops exist between particles and waves, in the chemical world feedback loops exist between atoms and molecules, and the in the biological world, feedback loops exist between cells, and also at all larger levels of scale – and then there are feedback loops between all these levels of scale.
Many non-trivial systems of feedback loops, in no way limited to neural networks, include more or less simplified representations of themselves. When neuroscientists attempt to talk about consciousness, they tend to miss the many smaller and bigger – spatial and temporal – pictures as well as a deeper understanding of the phenomenon of emergence. Restricting the possibilities of consciousness to entities that are comprehensible to humans is a form of anthropocentric hubris, and believing that feeding data to human created artificially “intelligent” systems will result in some kind of superior form of consciousness that makes other forms of consciousness obsolete, is yet another form of anthropocentric hubris.
We have no idea of the many kinds of life giving consciousnesses that exist at bioregional and planetary scale, operating across decades, millennia and millions of years, and yet our modern global mono-cult has the audacity to destroy biodiversity at unprecedented rates, not realising that the living planet won’t let this anthropocentric trajectory continue for much longer.
Evolution of relationships
Persistent feedback loops that endure across the life spans of one or more generations of living organisms gives rise to relationships between living beings. In fact, the dynamic process of life is better understood in relational terms rather than in terms of the modern WEIRDT notion of competitive individual “selves”. All ecologies depicted in the above diagram are networks of relationships between living beings. Ecologies are nested within each other, with the connecting lines between ecologies in the diagram representing inclusion, e.g. the human ecology includes household ecologies and the cellular ecologies that make up individual humans etc. In the visual notation used, the open-circle end of connecting lines always denotes a conceptual container.
At human scale, all healthy relationships, independently of the level of intimacy, are characterised by the maintenance of de-powered dialogue – by a mutual deep desire to understand a precious living being, and by a conscious commitment to refrain from the use of coercive techniques, i.e. the absence of persistent social power gradients. De-powered dialogue is the atomic building block for the emergence of healthy relationships:
Over the short-term, continuous de-powered dialogue allows us to learn more about each other.
Over the mid-term, this results in a convergence towards shared understanding, and genuine appreciation of commonalities and differences.
Over the long-term, it results in organic deepening of shared understanding based on growing numbers of shared lived experiences.
Levels of intimacy
Human wellbeing is only possible to the extent that we are embedded in healthy ecologies or care across all levels of scale – our wellbeing depends on the health of the living planet. Life at human scale is characterised by the bound of human cognitive and emotional limits, which become visible in the circles of intimacy that characterise our relationships.
Living together in:
A household over extended periods depends on compatible sensitivities. This allows us to survive, support each other in healing from trauma, and thrive – even in the context of harsh social and physical environments.
A human scale cultural organism of up to around 50 people depends on shared values and a shared understanding of our cognitive and emotional limits. This allows us to bring our gifts to life, to give and receive mutual aid, as part of a small number complementary households that offer a diversity of essential life skills – this is the smallest viable human survival unity.
An ecology of human scale cultural organisms, i.e. indigenous / local communities, depends on a small essential number of shared cultural practices that provide collaborative bridges between cultural organisms – this extends the geographic reach of our social networks to the spatial scale of the bioregional ecology.
A bioregional ecology depends on substantial number of essential shared cultural practices that are specifically adapted to maintain the diversity of the local bioregional ecology – this equips us with the collective knowledge and wisdom needed to remain deeply familiar and interdependent with the indigenous / local bioregional ecology.
The planetary ecology depends a small number of foundational and life affirming shared values – this connects us to the consciousness of the living planet that is beyond human comprehensibility, it helps to to stay clear of anthropocentric hubris, and it compels us to maintain a global knowledge ecology and the collective memory of the unavoidable life destroying consequences of all attempts of anthropocentric empire building.
By ignoring the limitations of human scale, even in a de-powered culture, due to human cognitive limits – we can only genuinely understand the contexts and needs of a small number of other people, shared understanding will inevitably erode, and eventually misunderstandings will cause harm. How long it takes for severe harm to materialise depends on many factors, but the result is always the emergence of a culture in which mutual trust erodes, and in which the caring relationships that form the fabric of society are strained and increasingly disrupted.
In super human scale societies culture is increasingly experienced as a set of social practices and constraints that shape experienced “reality” beyond the local community, practices and constraints that are not questioned because they seem to be as “real” or even more “real” than the non-human living world, i.e. the plants, animals, and fungi, and all the other creatures that are part of our lives.
From within a traumatising super human scale society those who dare to imagine alternative, human scale – and much less traumatising – cultural practices are easily dismissed as delusional dreamers who ignore “reality” and the dominant degraded understanding of “human nature”. Whether creative dreamers are able to establish alternative “realities” depends on their numbers, and on the extent to which the local culture has degraded into a powered-up cult that actively clamps down on such attempts.
Faith in “leaders” and “leadership” is a lost cause, a dangerous waste of precious time. It’s a bad idea for the exact same reason that it would be a bad idea to allow drunk people to drive buses or pilot airliners or ships. Paradigmatic change always emerges from the undergrowth, from within the cognitive blindspots of the dominant culture, from the vast non-commoditisable space that economists dismiss as insignificant “externalities”. There are growing cracks in the futile attempts to commoditise all hours of our existence, but these remain invisible to the many loudly yelling drunks who are addicted to one or more flavours of social power.
The culture of small human scale cultural organisms can also be powered-up. There is no shortage of examples of powered-up human scale cultural species. However, such cultural species can only sustain themselves in environments that offer an abundance of food and sheltered living conditions, which enable cultural organisms to spend time and energy on inter- and intra-group conflict.
Depending on the level of conflict, eventually, either the environment gets overexploited and some groups are forced to migrate, or the growing number of cultural organisms consciously adopt a less powered-up culture, to have more time available to pay attention to the essential life sustaining and life giving non-human relationships within the environment.
The advantage shared by all human scale cultural organisms, irrespective of culture, is the ubiquitous lived experience that culture is a conscious agreed set of values and cultural practices that can be adapted as needed between the participating human and non-human living beings.
Indigenous cultures also teach us about the human capabilities and limits of consciously maintaining caring relationships over time, with an intimate awareness of the last 7 generations and a deep concern for the next 7 generations. Nothing prevents these cultures from also preserving cultural wisdom that is much older, but there is also the recognition that the world and culture are dynamic processes. Any culture needs stay intimately connected to, woven into, and responsive to the dynamic context of the local bioregional ecosystem in order to remain viable.
Contrast such conscious awareness of the level of interdependence between all living beings with the modern delusional belief in the technological progress narrative powered-up by the invisible hand of the market. All powered-up cultures are learning disabled, and super-human scale powered-up cultures have to be understood as life destroying, i.e. biodiversity destroying and cultural diversity destroying death cults.
The invitation that life is extending to us
In the book The Beauty of Collaboration at Human Scale I explain how the development of electronic and eventually digital communication technologies within the context of the powered-up diversity destroying cult of industrialised “civilisation” has resulted in a global technological mono-cult with a deadly level of paradigmatic inertia.
Honouring our gift of life within the global mono-cult is impossible.
What we can do is to (re)discover the beauty of life at human scale that is at our fingertips when we consciously choose to (re)conceptualise life as a dynamic process of evolving caring relationships that encompass the entire planet, far beyond the limits of human comprehension, and when we become consciously aware of the enormous possibilities that open up when we start living with a deep commitment to de-powered caring relationships, extending seven generations into our past and into our future, within the limits of our human scale existence.
For systematic education, we are curating timeless concepts for nurturing and describing ecologies of care. This is not a journey that we can undertake as isolated individuals. This is the invitation that the living planet is extending to us if we honour our gifts and consciously recognise our timeless human scale limitations.
Social power is best understood as a highly addictive and socially corrosive drug. Meaningful education in the era of the sixth mass extinction event has to focus on the majority of the human population that is not power drunk, and on the humane treatment of those who are ready to confront their addiction to power head-on.
Much of the distress and many of the diseases we experience in modernity are the downstream symptoms of toxic cultural environments. As long as healthcare is focused on individual health, which is the model of health that dominates Western medicine, even in so-called developed countries with public health systems, people are conceived of as health consumers.
Our socially constructed “reality” creates a frame in which health and wellbeing become busyness opportunities for commoditised services. This frame depends on the false god of normality that underpins industrialised civilisation. In this frame the role of relationships is reduced to the simplistic cookie cutter templates that define the modern nuclear family and the powered-up relationships between workers and employers, i.e. organisations that are conceptualised as abstract machines that are classified into four broad categories: industry, government, education, and global, non-government organisations. Our lived experiences, especially when we live on the margins of society, continuously remind us of the cognitive dissonance between the toxic cultural expectations of industrialised cookie cutters and the biological and ecological origins from which the capacity for human culture emerged.
Within this “reality” the best we can ever hope for is an existence in bare survival mode.
The neurodiversity movement is a civil rights movement that addresses the upstream cultural pathology of toxic and dehumanising social environments, which manifest in the life-denying abstract machines that shape the institutional landscape of “normality”. However, the inmates of this institutional landscape are traumatised humans, who have lost their connection to most of the living world, especially the non-human living world, which has largely been pushed out of sight and out of mind. In the this process modern humans are literally losing their minds, becoming disoriented, and unsure about their place in a seemingly hostile world.
To achieve levels of care, healing, and wellbeing that allow humans to feel alive, and part of an ecology of care, requires us to collectively apply our capacity for culture to (re)imagine an existence beyond survival mode, and to collectively take concrete steps in this direction. By definition this involves questioning and as needed rejecting the institutional landscape of “normality”, drawing on the uniquely valuable perspectives and lived experiences of those who occupy vantage points on the margins of society.
What do we know about the biological and ecological origins from which the capacity for human culture emerged? What cultural principles are incompatible with (re)generating healthy local and planetary ecosystems? What cultural principles are capable of (re)generate ecologies of care, healing, and wellbeing? Who needs to learn? From whom can we learn?
Treating the modern industrialised addiction to social power
What cultural principles are incompatible with (re)generating healthy local and planetary ecosystems? What do we know about the biological and ecological origins from which the capacity for human culture emerged?
So far all socially powered-up (hierarchically organised) civilisations have collapsed, with a perfect track record. Today all the scientific evidence we have is telling us that we are in the middle of the sixth mass extinction on this planet. This extinction event is the direct result of several thousand years of powered-up empire building endeavours, and especially of the last 500 years of modern colonialism and neo colonialism, including 200 years of industrialised empire building. The rapid loss of species we are seeing today is estimated to be between 1,000 and 10,000 times higher than the background extinction rate.
The current extinction rate of mammals is likely the largest extinction event since the end of the dinosaur era, according to the researchers. Using computer-based simulations they predict that these rates will continue to rise rapidly—possibly reaching up to 30,000-fold above the natural level by the year 2100. This is if current trends in human behavior and biodiversity loss continue.
It is time to acknowledge that all cultures that normalise and cult-ivate the emergence of social power hierarchies are doomed. They consistently result in a collective learning disability and in an inability to recognise and adapt to changes in environmental conditions in a timely manner.
Humans share the latent capacity for establishing social hierarchies with other primates. However, the human capacity for culture and symbolic thought also allows us to understand the harm caused by maintaining social hierarchies and the possibilities that open up by co-creating cultures that consistently clamp down on emergent social hierarchies.
Available archaeological and anthropological evidence points towards highly egalitarian social norms within human scale (i.e. small) pre-civilised societies. In such societies social norms against wielding power over others will have allowed the unique talents and domain specific knowledge of Autistic people be recognised as valuable contributions.
In a psychologically safe environment at human scale (up to Dunbar’s number of around 150 people) the inability to maintain hidden agendas becomes a genuine strength that creates a collaborative advantage for the entire group. In fact Autistic honesty will also have made Autistic people prime candidates for maintaining trusted collaborative relationships with other groups.
Furthermore, from the track record of powered-up empire building attempts, and from the roles and well documented behaviours of “great leaders” in such attempts, we can reach the conclusion that social power is best understood as a highly addictive drug, possibly the most dangerous and destructive drug for the human species.
Instead of recognising the dangers of social power, industrialisation and the use of fossil fuel has amplified social power gradients by at least two orders of magnitude. The many powered-up super-human scale institutions within our society have turned at least several hundred million humans into social ladder climbing addicts.
Power, especially absolute and unchecked power, is intoxicating. Its effects occur at the cellular and neurochemical level. They are manifested behaviourally in a variety of ways, ranging from heightened cognitive functions to lack of inhibition, poor judgement, extreme narcissism, perverted behaviour, and gruesome cruelty.
The primary neurochemical involved in the reward of power that is known today is dopamine, the same chemical transmitter responsible for producing a sense of pleasure. Power activates the very same reward circuitry in the brain and creates an addictive “high” in much the same way as drug addiction. Like addicts, most people in positions of power will seek to maintain the high they get from power, sometimes at all costs. When withheld, power – like any highly addictive agent – produces cravings at the cellular level that generate strong behavioural opposition to giving it up.
Those who know how to abstain from the drug of social power are the ones who have a social conscience – refusing to engage in the game, those who are still deeply embedded in the local ecology beyond the human, and those who consciously choose to stay on the margins of society.
Taken together, these groups constitute the majority of the human population. This fact is conveniently overlooked by the powered-up elites. This denial is symptomatic of addiction, and it provides us with a clue about what we have to do.
The addicts will only admit their addiction when they feel safe enough to do so, and if suitable humane treatment options are available. Of course, even with available treatments, only some addicts will admit that they have a problem, and others will remain in denial. No one should be subjected to forced treatment, but at the same time, no one on this planet should be exposed to the untold harms caused by the “great ideas” of “leaders” who are addicted to social power.
Conceptualising social power as an addiction provides the majority of the human population with a highly effective bullshit detection tool, capable of eroding the social licence of the toxic institutions and social paradigms that are holding entire societies hostage to decisions made by power drunk addicts.
Meaningful education in the era of the sixth mass extinction event has to focus on the majority of the human population that is not addicted to social power, and on the humane treatment of those who are ready to confront their addiction to social power head-on.
Holistic learning journeys
What cultural principles are capable of (re)generate ecologies of care, healing, and wellbeing?
The journey towards a healthier relationship with the ecosystems which we are part of starts with the most powerful tool at our disposal, the introduction and consistent use of new language and new semantics. We are curating timeless concepts for nurturing and describing ecologies of care. Many of the concepts of the new language are linked to related articles, each of which link to further sources and related research.
The learning journeys below refer to an overarching three time horizon framework that attempts to be universally inclusive, whilst at the same time recognising the level of trauma amongst the growing numbers of marginalised people.
Survival tools for everyone; appreciation of:
human scale
local collaboration
indigenous wisdom
Survival tools for the marginalised; all of the above – plus appreciation of:
intersectional solidarity
mutual aid
cognitive and emotional limits
chosen whānau
Transformation; appreciation of:
solidarity beyond species boundaries
plant based diets
Overall direction of travel; all of the above – plus appreciation of the wonder of life
Visibly extend trust to people, to release the handbrake to collaboration.
Unlock valuable tacit knowledge within a group.
Provide a space for creative freedom.
Help repair frayed relationships.
Replace fear with courage.
People have known about these principles for millennia. Some of the principles have been rediscovered many times, by different groups of people in various geographies and in different cultural contexts. Culture is constructed one trusted relationship at a time – this is the essence of fully appreciating diversity.
The objectives of the Autistic and neurodiversity civil rights movements overlap significantly with the interests of those who advocate for greater levels of cultural and psychological safety in the workplace and in society in general. In the workplace the topics of cultural and psychological safety are relevant to all industries and sectors.
Education on these topics is essential for addressing entrenched problems of lacking cultural and psychological safety in the workplace, and corresponding problems of lacking cultural and psychological safety in local communities.
The Autistic Collaboration Trust in collaboration with S23M Healthcare Solutions is offering a comprehensive range of professional education courses for medical doctors and allied health professionals based on our unique database of lived experiences.
This course is an interactive “deep dive” into neurodiversity and autistic culture. It is creative, collaborative, and goes beyond the usual medical and workplace neurodiversity ideas. Very refreshing to take part in CPD catering to different learning and communication styles. It was the most fun I’ve had in CPD this year! The course book is beautiful.
Dr Sarah Bernard FRACP, Australia
Informative and tied all of my focused interests (Neurodiversity, anthropology) together. Would love to learn more!
Brittney Geary, School Psychologist, USA
The course content was excellent. It provided a really comprehensive introduction to the wider cultural and political context which impact on neurodivergent experience. The written/video materials were excellent and it was helpful to be able to review these well in advance. I think the group discussion was extremely useful as we were able to share views and lived experience.
Amber Lane, NHS, Physiotherapist, UK
The course provided a really comprehensive introduction to the wider cultural and political context which impact on neurodivergent experience. The written/video materials were excellent and it was helpful to be able to review these well in advance. I think the group discussion was extremely useful as we were able to share views and lived experience.
Participant feedback on the delivery format of our courses
Applied education – learning by doing
We are all in this together
We all thrive when being given the opportunity to work with our most trusted peers. In a genuinely safe environment everyone is acutely aware of all the collective intelligence and capability that is available in the form of trusted colleagues, friends, and family.
Regular immersion in Open Space that is facilitated by members of marginalised communities is a way of providing training wheels in cultural and psychological safety, allowing organisations to rediscover collective learning, and to incrementally become familiar with the thinking tools for creative collaboration. It provides an avenue out of the deadly lock-in to paradigmatic cultural inertia, and this in turn may shift how humans will treat each other and our non-human contemporaries on the journey towards being composted and recycled as part of the big cycle of life.
Safe environments allow organisations and individuals to find their niches and thrive in the world. We invite you to collaborate with the Autistic community and other marginalised communities to discover deeper forms of collaboration. This applies to organisations in all sectors and industries, and to organisations of all sizes.
Our unique intersectional community-powered employee wellbeing service enables a holistic, multi-dimensional approach to cultural and psychological safety, by centring those who are marginalised, and by harnessing intersectional solidarity to clamp down on toxic social power dynamics.
NZNO is a bicultural organisation that embraces Te Tiriti o Waitangi, best demonstrated through the partnership of NZNO and Te Rūnanga, the bicultural arm that seeks to achieve the aspirations of Māori health professionals. The commitment to improving the workplace culture across the healthcare sector in Aotearoa New Zealand, is paramount.
To demonstrate a genuine commitment to cultural safety and psychological safety, and to better understand the daily lived experience of employees in your organisation, we recommend a subscription to S23M’s community-powered Employee Wellbeing service to all employers.
Kerri Nuku | Kaiwhakahaere Mairi Lucas | Acting Chief Executive New Zealand Nurses Organisation | Tōpūtanga Tapuhi Kaitiaki o Aotearoa
Transdisciplinary collaboration hinges on psychological safety, cultural safety, and inclusiveness. These and other human factors determine the inherent social value of a company, the wellbeing of employees, and the quality of care delivered to patients.
To date the quality of social interactions and culture have been difficult to evaluate, but the emergence of their importance demands an ability to measure and evaluate these factors. The independently administered Employee Wellbeing surveys operated by S23M represent an excellent tool to assist your organisation to meet this challenge head-on.
A/Prof Terry J Hannan MBBS;FRACP;FAIDH;FACMI Visiting Faculty Australian Institute of Health Innovation, Macquarie University International Academy of Health Sciences Informatics
Many people are stuck in survival mode. We need to slow down, to the relational speed of life. By definition no one is able to do this in isolation. It also can not be achieved by training. It requires lived experience, imagining alternative de-powered social operating models, and educating ourselves in critical thinking tools and de-powered forms of transdisciplinary collaboration.
A thought experiment: Think about everything you have learned about the organisations and institutions of our civilisation, not from what you were taught, but based on what you have encountered and observed first hand – based on your own lived experience. Now take this personal wisdom about how specific corporations, industries, and governments actually operate, and extrapolate it to all the organisations and institutions of our civilisation with which you don’t have any first hand experience. Then reflect on whether this increases or decreases your level of trust in the institutions of modern civilisation, your confidence in the abilities of these institutions to learn and improve, and your overall outlook on the human predicament.
If we all do this thought experiment, some of us may lose all faith in humanity, others will extrapolate from a mix of positive and negative examples, and a few would be quite optimistic, but the statistical averages of all our assessments, across all of us, would actually provide an accurate picture.
I recommend this experiment because over the course of many years of working as a knowledge archaeologist in the digital sphere, I have seen the operational logic of many industries from the inside, in terms of the way in which
new services and products are developed,
pricing models are developed,
corporate customer segments are routinely subsidised by individual consumers,
regulation is developed and implemented,
contracts are engineered.
For more than ten years I actually resisted the above thought experiment, assuming that surely things are not quite as bad in the sectors and industries that I had not yet seen from the inside. But you can only do this for so many years before having to conclude that actually the dominant economic paradigm consistently plays out in predictable ways across the operational models found in virtually all sectors and industries.
The common underlying themes that emerge as the main problems across all sectors are the corrupting influence of social power dynamics, the blindness to human individual and collective cognitive limits, and the delusional belief in technological progress that is baked into the simplistic and misguided neoliberal economic paradigm.
For bare survival we need to become pain-fully aware of our collective cognitive limits and the context in which we find ourselves.
For basic human wellbeing we need to identify and clamp down on all established and emerging social power gradients.
To thrive, we need to replace the delusional belief in technological progress with humility and with comprehensible local ecologies of care beyond the human.
To embark on this path of discovery and collective (un)learning requires us to simultaneously pay attention to three complementary time horizons. This article provides a synopsis of important ingredients, but it does not provide a recipe. The most appropriate recipe(s) vary greatly between contexts, and need to be discovered and refined through lived experiences in good company at human scale:
Surviving
Focus on the here and now
To:
Cope on a daily basis
Mask and perform within the current social operating model
Arguably the answer to the question of why the mental health and suicide statistics for Autistic people are what they are is staring us in the face – because many of us quickly realise that the best we can ever hope for in this hypernormative civilisation is acceptance of our existence in bare survival mode, performing the function of a mindless busy cog and consumer in the sensory hell of the industrial machine.
More and more people today, and especially intersectionally marginalised people, including traumatised Autistic people, are stuck in survival mode. We all need adequate support to survive, but this is far from adequate for maintaining human wellbeing, healthy communities, and a thriving planetary ecosystem. The need for coping strategies won’t ever go away completely, but if we also collectively find the spoons to work on the other two time horizons, the need for coping strategies will substantially reduce over the coming years and decades.
The following interview of Sheldon Solomon by Ashar Khan does a beautiful job of explaining how the disciplines of a performance oriented culture train us and lock us into operating in survival mode.
Core ingredients for survival:
Peer support – to cope with trauma
Mutual aid – to meet basic needs
Access to healthcare – to recover from illness
Important disciplines
The neurodiversity paradigm – to nurture a non-pathologising and re-humanising language
Meditative practices – to reconnect our mental and sensory capabilities with our local context
Physical exercise – to maintain our physical capabilities
Nutrition – to recharge our physical and mental capabilities
Sleep hygiene – to recharge our mental and emotional capabilities
Biology – to understanding our basic needs as well as cognitive and physical limitations
Psychology – to assist our minds to cope with and survive emotional stressors
Medicine – to assist our bodies to cope with and survive biological stressors
Economics – to become street wise and become aware of systems of oppression
Training – to develop skills to perform jobs that allows us to survive within the system
De-powering
Focus on the year(s) ahead
To:
Rediscover the beauty of collaboration at human scale
Rediscover timeless patterns of human limitations
To exit survival mode, we need to slow down, to the relational speed of life that is compatible with our evolutionary history. This is hard. By definition no one is able to do so in isolation. It requires us to extend our sphere of discourse. It requires imagination and creative collaboration. It is highly context dependent. It can not be achieved by training. It requires the courage to ask better questions, and to leave behind discipline-specific best practices. Life is not a performance, it is the active participation in an ecology of mutual care.
Some of us have many years of experience with the art of de-powering. Collectively we need to scale up these efforts substantially via education as part of the neurodiversity movement and intersectional solidarity on the margins of society. Even over the long-term, the timeless art of de-powering will remain relevant, to clamp down on social power gradients wherever they start to (re)emerge.
The current level of cultural inertia in neuronormative society can be understood as a profound crisis of imagination. This discussion with David Graeber can serve as a starting point for imagining alternative de-powered social operating models, and for educating ourselves in critical thinking tools and de-powered forms of transdisciplinary collaboration.
The arrow of progress is broken beyond repair. Instead of rearranging the seating order in a powered-up bus, it is time to board a de-powered lifeboat. The chances of survival in a powered-up bus driving over a cliff are slim, and the chances of having fun along the way are zero.
to co-create healthier lives and livelihoods at human scale
Sharing the burden of interfacing with the powered-up external social world – to reduce the time spent masking and performing
Nurturing depowered cultural organisms & species into existence – to reduce the need for coping skills
Important disciplines
Depowered dialogue – to nurture genuinely safe relationships into existence
Daoism – to understand timeless patterns of social power dynamics
Buddhism – to practice compassion and non-violence
Anthropology – to expand our sphere of cultural possibilities
The neurodiversity movement and Autistic culture – to genuinely appreciate the diversity of human ways of being
The arts and humanities – to catalyse our imagination and to nurture creative collaborations
Sociology – to diagnose and address social diseases
Political science – to analyse current systems of oppression
Evolutionary theory – to understand life and culture as dynamic processes
Ecology – to understand the complexity of life beyond species boundaries
Education – to learn how to think, ask better questions, and to develop thinking tools
Thriving
Focus on the 7 generations ahead
To:
Participate in comprehensible local ecologies of care beyond the human
Live meaningfully, compassionately, and courageously no matter what
The more communities are gaining experience with de-powered forms of collaboration at human scale as the only viable survival strategy to climate chaos and ecological challenges, the more the training in masking and performing will fade intro the background, giving way to timeless Daoist, Buddhist, and indigenous wisdom about about the diversity of life, and about the suicidal consequences of tolerating, normalising, and cult-ivating social power games.
At this point in time it is hard to imagine a world where de-powered forms of collaboration are as ubiquitous as powered-up forms of competition are in today’s world. But in good company our sense of humour goes a long way in terms of rediscovering how to thrive whilst continuously eroding the support base of powered-up systems of oppression.
It is time to slam on the brakes, stop at the cliff, and get out the climbing gear, and to have some fun along the way. As the old system is dying, new systems are being birthed as part of the big cycle of life. We can learn a lot from the Congolese forest people and from the life affirming philosophy of Michael Dowd.
Core ingredients for thriving:
Remember who we are and how we got here – to stay clear of anthropocentric hubris
Accept the inevitable, honor our grief – to become part of the big cycle of life
Prioritise what is soul-nourishing
to heal from trauma
to experience the joy of life
A fierce and fearless reverence for life and expansive gratitude – to be grateful for every day in good company
Important disciplines
Humour
Indigenous cultures – to build on ancient knowledge and wisdom
Non-human cultures – to reduce anthropocentrism
Interspecies communication – to nurture compassion beyond the human
The art of niche construction – to frame cultural evolution as a creative and collaborative process
Earth systems science – to integrate the global knowledge commons
In energetically and socially powered-up societies, the public is governed by the opinions of those who are addicted to wielding social powers rather than by local collective intelligence. In powered-up societies paradigms change incrementally, if at all, one funeral at a time. Our institutions have become the drug of choice for addicts. We have replaced the rich relational web of life beyond the human with a transactional Web of abstract collective delusions.
The illusions of being in control & being controlled
Our analyses indicated that, even when controlling for other measures of interdependence, positive and negative affect in response to a target’s outcomes (i.e., emotional shared fate) was the primary predictor across five of the six measures of helping we investigated (behind relatedness for welfare tradeoff ratio in Study 2), while perceptions of Shared Fate only had a weak positive effect (Study 1) or no effect (Study 2) on helping after controlling for other measures of interdependence.
The fact that we found that perceived shared fate (at the between-person level) negatively predicted willingness to help in the absence of reciprocity, as well as negatively predicted willingness to help an enemy in the absence of reciprocity, but emotional shared fate positively predicted willingness to help in the absence of reciprocity (and other measures of help) across targets supports the notion that perceived shared fate may be more akin to instrumentality than emotional shared fate. However, this hunch will need to be investigated in future studies.
In large-scale postindustrial societies with high mobility and a complex division of labor, individuals may be highly fitness interdependent in reality, but they may not receive cues that they are interdependent (perhaps because market transactions cue interchangeability and replaceability rather than interdependence).
In contrast, in smaller-scale societies, interdependence in subsistence activities and risk management may provide consistent cues that lead individuals to perceive themselves as more interdependent with those around them.
The WEIRD way of busyness as usual is over, but many are still going through the motions of deeply engrained habits. We can’t predict the sequence in which the so-called economy is going to unravel, i.e. the unraveling of deeply engrained expectations and habits, but simply from an ecological and climate chaos perspective, we can expect major transformations in the next 5 to 10 years. We’re in the middle of the collapse of the house of cards of perception management.
The slow motion train wreck of the collapsing financial vortex is only one aspect of crumbling perception management. Neither the collapse nor the rebirth of biologically diverse ecosystems is observable as a “Big Bang” at the very short time scales comprehensible to modern humans.
We are witnessing obscene, nauseating, explicitly life destroying displays of mega scale institutionalised power within an imploding system of empires. Collapse is an inevitable, liberating, life affirming process of de-powering, both in terms of energy use and social power gradients.
The collapse of trust between ordinary people in the WEIRD world is as profound as the collapse of trust in WEIRD institutions. Less WEIRD societies are several steps ahead in their understanding of the dysfunction of mega scale institutions, and have much more experience in nurturing and maintaining mutual trust and ecologies of care outside of abstract mega scale institutions. David Graeber understood this very well.
No matter how various local cultures evolve, the unavoidable suffering will be greater the longer the inertia of established institutions prevails, as it only deepens the level of destruction of the biosphere and the remaining human habitat. We have entered uncharted territory.
Humour is the ultimate weapon. It is time to have a good laugh, and to show power addicted capitalists the immediate exit – without any further returns. At the same time, we can offer education that guides those who feel trapped towards safe exit paths into emergent alternative human scale realities.
We have a unique opportunity to catalyse and nurture non-financialised human scale ecologies of care (back) into existence. In good company, at human scale, this is the journey we can commit to, one day at a time, and with a good dose of humour. If you replace the toxic language of busyness, think long-term, enjoy interdependence, clamp down on meritocracy, avoid distractions, and share knowledge, you can relax. No one is in control.
Energetically powered up societies
After spending a few days with building noise around me, I am reminded how much quietness, a state of non-busyness or ‘non-doing’ in Daoist terminology, is essential for our wellbeing.
How long it would take to manually do all the work that diggers and tucks do in our noisy world? Only a very small fraction of such work would even be considered possible or worthwhile, and some worthwhile labour intensive projects would simply take many generation. And yet, imagine the health benefits of WEIRD people doing manual work instead of spending their working days inventing and filling in forms on the internet.
This presentation on (re)learning about sustainable and human-powered machines from Kris de Decker from Low Tech Magazine is a great example of knowledge archaeology, including many astute and timely observations from times before the modern industrial era.
Socially powered up societies
To understand the absurdity of socially powered up societies, I can recommend this talk by David Graeber on the connections between bureaucracy, power, and systemic discrimination & violence, delivered in his unique humorous style.
Why are institutions obsessed about measuring performance? So we can pretend that economic models relate to the so-called “real” world of performance – the civilised world of “genuine pretending” as Hans-Georg Moeller would describe it.
We learn to perform and compete against externally imposed performance standards at school, because otherwise we would simply be following our intrinsic motivations, and that would make us “uncontrollable” – and apparently that’s dangerous.
This means we are taught to pretend, deceive, and lie at school. When performance is quantified, the “best” performance is the the one that exploits loop holes in performance metrics and rules of governance, to cut-corners, to generate the “winning” numbers. We are taught that legal corner-cutting is equivalent to rational, intelligent behaviour.
And we are also taught that humans are replaceable cogs in the industrial machine. We can no longer even conceptualise a way of being and a way of living that does not cult-ivate and sanctify “performance”. Economic “performance” in particular, is explicitly framed as a competitive game that is motivated entirely by the external incentive of maximising profit, an abstract metric. Creative collaboration and imaginative collaborative games are no longer part of the cultural substrate.
Modern medicine is training hyper-specialised doctors in the diagnostics of diseases and disorders of individual humans, without much consideration of the role of the cultural environment in generating dis-ease, distress, and severe illness. Instead of examining the cultural environment through a critical lens, individuals are measured against the abstract performance metrics of the needs of the industrialised machine.
Matt Kennard provides an astute analysis of the social construction of global corporate power, including the way in which the existential fear of the inmates of government bureaucracies compels them to outsource key responsibilities to corporate entities, including examples that illustrate some of the functions that are best mapped out and understood visually as follows:
Zooming into the feedback loops between capitalised busyness, capitalised banks, and governments:
In the diagrams above I did not include NGOs. They don’t wield much direct financial power, but of course they have a role in corporate perception management, as outlined by Matt Kennard. We can observe it in action in the way the Autism Industrial Complex operates, which can be visualised as follows:
Our education system thoroughly brainwashes people into believing that financial “wealth management” in an abstract world of interest bearing debt, as well as the related obsession with social status and perception management, are somehow benign, and not inherently unethical and fundamentally corrosive and corrupting factors in human societies.
Today, if we are lucky, if we have a one or more genuinely safe relationships in our ecology of mutual care, we can share our gifts with the people who are closest to us, and otherwise everything is transactionalised. If we are less lucky, the toxic culture around us actively prevents us from sharing our gifts.
When hypersensitive, i.e. more sensitive than “normal” people attempt to engage in a transactionalised world, sooner rather than later our bodies and minds refuse to cooperate, and our health suffers in tangible and sometimes life-threatening ways.
Surviving, yet alone thriving in a transactionalised world is an impossibility for some people. Those who convince themselves that “they can make it”, that they can endure the cognitive dissonance generated by a toxic culture, are on track for burnout and worse further down the track.
The dangers of “education bypass”
Specifically what is getting to me is not the depressing state of the planetary ecosystem, which is something we can cope with in good company, but well-intentioned people who are less aware of the depth to which virtually all aspects of our civilisation are actively contributing to human and non-human suffering. Reading from people who genuinely believe they are doing good by using the master’s tools “for the good” is painful.
As if there is not enough to be concerned about with the rise in right-wing political agendas, now even some scientists and climate activists are jumping on the bandwagon of bypassing education, resorting to behaviourist techniques. As if the ends justify the means, and as if this kind of approach won’t have disastrous unforeseen consequences. The article World scientists’ warning: The behavioural crisis driving ecological overshoot has been co-authored by a young entrepreneur, by scientists concerned about the climate, and by an advertising agency!
The approach seems terribly naive, lacking deeper transdisciplinary integration. My concerns centre around the blindness to human scale and the blindness to human cognitive limits – and a corresponding desire to somehow “control” the destiny of humanity at super human scale. The old, timeless understanding that all forms of powered-up relationships – this includes all forms of competition for social status of any kind, ultimately end up in disaster, seems to have been lost in our busy hyper-powered-up world. Nothing seems to have been learned from the nuclear arms race or from earlier civilisations.
There is a very important distinction between arguing to “win” and bi-directional sharing of knowledge and experiences to learn from each other.
It is helpful to distinguish five basic categories of beliefs and related knowledge:
Scientific theories backed by empirical evidence that we are intimately familiar with. Only a small minority of our beliefs fall into this category.
Scientific theories backed by empirical evidence that we are not intimately familiar with. If we are “educated”, a sizeable minority of our beliefs fall into this category.
Beliefs based on personal experiences and observations. For those who identify as Autistic, a significant number of beliefs held fall into this category.
Explicit social agreements between specific people regarding communication and collaboration. For those who identify as Autistic, a significant number of beliefs held fall into this category, especially agreements with family, friends, and colleagues.
Opinions based on what others have told us and what we have been encouraged to believe by parents, teachers, and friends, … and politicians and advertisers, etc. For those who do not identify as Autistic, the majority of beliefs held fall into this category.
All categories of human beliefs are associated with some level of uncertainty regarding the validity and applicability to a specific context at hand.
When people argue to “win”, they mostly rely on opinions. Such arguments are about dominance, not facts.
The use of propaganda, in all its forms and regardless of intent, ignores that the human capacity for culture and belief formation is not limited to the social transmission of opinions, and thereby it limits the evolution of beliefs to a competitive game of winning vs losing.
Yes, propaganda does “work” in the sense of shaping opinions, but it has many side effects – generating cognitive dissonance, inciting a never ending arms race of manipulation, of continuous perception management, of outcompeting each other in order to “win”, and many other effects produced by the naive assumption that all beliefs are opinions.
In the modern industrialised world educated people also entertain scientific beliefs. But due to the way our institutional landscape is shaped, due to the powers granted to capital as a result of the dominant ideology of neoliberalism, they entertain many more opinions. The tools of propaganda only have the power they have because of this institutional landscape.
The simplistic argument that the only theoretical alternative to propaganda as a way of changing human collective behaviour is to spend decades educating people in various sciences, as claimed in the article referenced above, is simply not true. This argument ignores the human capacity for forming beliefs based on personal experiences and observations, and beliefs that represent explicit social agreements between specific people regarding communication and collaboration. These categories of beliefs can play a huge role at human scale, and I would argue, they play a huge role in the lives of Autistic people – and we get traumatised when our lived experiences and our social agreements are routinely ignored or violated by culturally “well-adjusted” people in our society.
I firmly believe in the unescapable biological fact of human cognitive limitations. Maybe “Dunning-Kruger societies” would be a better name for all so-called civilisations. Economics, physics, and the medical sciences are good examples of disciplines that are prone to the Dunning-Kruger effect. In the coming years the planet is well equipped to teach people – unfortunately this will learning the hard way – to trust ecological evolutionary forces more than powered-up human institutions.
Emergence and self-organisation
I discovered a wonderful interview of Robert Sapolsky by Hans Georg Moeller on emergence and self-organisation within living systems. Hans Georg Moeller asks all the questions that I would have asked and a few more. The interview is a beautiful call for transdisciplinarity, an acknowledgement of human limitations, and an antidote to anthropocentric hubris. It is also interesting because I do differentiate between the myth of “free will” and agency, which the dictionary defines as:
agency : the ability to take action or to choose what action to take
“The protest gave us a sense of agency, a sense of our own power to make a difference.”
In my conception agency is not “free will”, it is the human ability to deliberate, it is a mental feedback loop that we sometimes – or often – run in internal or external dialogue before taking action. I think especially Autistic people, more often than not, have no choice but to consciously deliberate before taking action. How much deliberation we engage in, either internally, or in dialogue with others, is one of these complex factors that is shaped by our neurological and sensitivity profile. Agency involves the intent and commitment to action, and it activates the physical energy we have.
We know what we’re doing
It is time to stop trying harder to fit in. We have already done so all our life. We need to slow down, to the relational speed of life that is compatible with our evolutionary history. Life is not a performance, it is the active participation in an ecology of mutual care.
I recommend the beautiful podcast Understanding Suffering and Knowing Our Place with Galina Angarova from the Lake Baikal region of Siberia. The language for co-creating ecologies of care beyond the human is universal, it is sacred, transcultural, timeless – alive, not life denying. The podcast includes an important message from indigenous women to powered-up governments and corporations, the same message that Autistic activists have for the Autism Industrial Complex: Leave us alone, we know what we’re doing.
Power can be understood as a learning disability. The WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions illustrates that global NGOs can do really good work, brilliant work; and at the same time, it illustrates how financially “under-powered” organisations are easily ignored and by more powered-up actors, i.e. by national governments, whenever that is convenient. In a financialised world, money is the privilege of not needing to listen and learn. Often there is a chasm between the simplistic executive summaries that NGOs are forced to produce as a result of political pressure exerted by powerful funders and the in-depth analyses and guidelines developed by those who work with marginalised groups on a daily basis.
The in-depth guidelines from the WHO framework for meaningful engagement are an important tool that healthcare service providers can reference when adopting Autistic community insights and recommendations gained from Dr. B. Educated courses for healthcare professionals.
An extract from the WHO framework illustrates the alignment with the goals of the neurodiversity movement, and perhaps also the effect that the neurodiversity movement has already had on global NGOs. It is up to us – collectively – to ensure that these guidelines are not ignored by our governments, who are part of the WHO:
Participatory approaches can be either induced and/or organic. Induced participation is initiated by those in power, often a Member State or governing organization, whereas organic participation covers various civic activities linked to social movements, with bottom–up approaches that empower groups that are marginalized.
A technical tool (such as this framework) that can be used by WHO and Member States is an example of induced participation. Induced participation can also support organic participation as it can strengthen the capacities of individuals and communities, leading to further empowerment, greater autonomy and mobilizing community action. Organic participation, such as social movements like Black Lives Matter and MeToo, can place pressure on those in power to initiate new or additional actions and commitments that result in induced participation.
The decolonization of global health has regained prominence over a half a century later in parallel with social movements for anti- racism and anti-discrimination, with the explicit aim of dismantling systems of dominance and power to improve population health and ensuring that lived experience is considered. Participatory approaches can support redistribution of power from institutions, policy- makers, health providers and health workers to people with lived experience, aligned with work to decolonize global health.
Ensuring the participation and meaningful engagement of individuals with lived experience requires a review of historical power differentials, which may not be evident because of natural implicit or explicit biases and underlying structural drivers. If these factors are not addressed, they can result in the opposite of empowerment – powerlessness and cynicism. This especially applies for individuals with lived experience in groups that are marginalized who experience discrimination that results in health inequities.
Neoliberal influences on health should be considered a central structural driver of health inequality. Neoliberalism promotes economic restructuring, deregulation, free markets and privatization, limits public expenditure and promotes individual responsibility. Since the 1980s, this has led to increased inequalities in income and service failure due to austerity measures, leading to further inequality and poverty. Social determinants of health are driven by neoliberal policies that directly exacerbate NCDs, and mental health and neurological conditions.
Asymmetrical power, oppression, discrimination and other forms of social categorization are omnipresent and associated with the concepts of hierarchical power and separation. “Hierarchical power” refers to a system in which society is stratified according to constructed categories, whereby those at the top are actively afforded privilege, capability and capital in all domains of life, while others are actively disadvantaged. These structures were created and maintained for the purpose of retaining power. Understanding how these structures still result in dominance is key to reducing health inequities.
Hierarchical power is ingrained in the global health architecture and rooted in asymmetrical power and relations. Power differentials operate through colonialism and neocolonialism, imperialism, patriarchal norms and practices, and neoliberal influences on health, including its commodification and emphasis on the free market rather than the right to health.
Through “separation”, humans view themselves as different from other animals and species and also different from other humans. Thus, some humans categorize people according to social constructs, resulting in “othering”, including within health systems. In global public health, individuals with lived experience are separated from other stakeholders, such as health professionals, academics and policy-makers.
The toxic combination of separation (resulting in categorization) and maintenance of power structures leads to and is due to discrimination. Separation and hierarchical power remain the common denominator, regardless of the type of discrimination and the level at which it is imposed.
Racial discrimination is a relevant, tangible link between health equity and power in this context. Discrimination is, however, intersectional, and “othering” can be seen in various dimensions and due to various grounds. For groups that are marginalized, discrimination according to social categories such as gender identity and sexual orientation, religion, language, legal status, disability, age, migrant or refugee status, class or other status, can interact, intersect and exacerbate disadvantages and health inequity.
Discrimination, racism and xenophobia exist in every society and are expressed in individual behavioural, physiological and psychological responses, resulting in preventable health conditions and mortality in groups that are already marginalized. The health inequities that affect populations that face discrimination are rooted in racism shaped by the legacies of colonialism, slavery, imperialism and xenophobia. These inequities are reflected and result in persistent, multigenerational social and economic disadvantages.
Discrimination and racism affect every institution and system of social governance, many of which uphold and exacerbate power imbalances. Racial discrimination, racism or exclusion on the basis of characteristics or identity results in unequal power relations, which lead to establishment of unequal policies, programmes and services. Racism and racial discrimination therefore remain fundamental social determinants of health. It is essential to address these health inequities to ensure that “no one is left behind” and to achieve SDG 10, to “reduce inequality within and among countries”.
The failure of health systems and global governance has contributed to and perpetuated such imbalances, resulting in long-standing challenges. Health systems play a vital role in reducing health inequity but can also exacerbate or extend them. Health systems can thus influence and be influenced by racial discrimination. Many populations that experience racialization have suffered discrimination within health systems and are affected by intergenerational racial trauma. The same is true for social inequality associated with sexism, heterosexism, ableism, discrimination by religious belief, education, income and other social determinants, resulting in unequal health outcomes.
The concept of “participation” is deeply rooted in human rights, power, social justice and social action. The right to the highest attainable standard of health as codified in Article 12 of the International Covenant on Economic, Social and Cultural Rights, General Comment No. 14 includes “the participation of the population in all health-related decision-making at the community, national and international levels”.
Meaningful engagement of individuals with lived experience of NCDs, and mental health and neurological conditions has been championed by many civil society organizations, and sustained advocacy and community mobilization has influenced those in power in shaping health-related policies, programmes and services. Today, participatory approaches are recognized as a core component of the prevention and control of NCDs and in promotion, protection and care in mental health.
Recent examples include the scaling-up of the WHO QualityRights initiative to support governments and policy-makers in transforming mental health systems so that they are based on recovery, rights and inclusion. In addition, a WHO handbook on social participation for UHC provides guidance for governments on meaningful engagement with populations, communities and civil society in making national decisions about health. Meaningful engagement should be seen as a core strength on which to build evidence and experience and to further operationalize, standardize and institutionalize these practices and approaches for NCDs, mental health and global public health.
A similar transformative change is the participation of individuals with lived experience in movements for disability and mental health. The disability rights movement has made progress in reducing health inequity through the Convention on the Rights of Persons with Disabilities, ratified in 2006, which requires States Parties to recognize that people with disabilities have the right to enjoy the highest attainable standard of health without discrimination on the basis of disability. States Parties are also committed to provide people with disabilities with the same range, quality and standard of free or affordable health care and programmes as are provided to other people, including sexual and reproductive health services and population-based health programmes. Similarly, the WHO QualityRights initiative engages people with psychosocial disabilities and their representative organizations in the design and delivery of training. Training is also provided for health workers, policy-makers, carers, community members and people with lived experience of disability in advocating for a human rights-based approach to mental health and to support people with disabilities in advocating for their rights.
The human right to health is also integrated into international human rights treaties, regional instruments and more than 100 constitutions around the world.
Creation of an environment conducive to participation that is representative, inclusive, impactful and sustainable is resource intensive. While gaps exist, the evidence will evolve and become stronger through practice and implementation, particularly in low- and middle-income countries.
Individuals with lived experience must be treated with dignity and respect. Participation is a human right. Their lived experience should be considered a form of expertise, alongside and on a par with traditional forms of evidence and data in global public health policy and practice.
Health systems and global governance are built on systems of oppression. They perpetuate discrimination and exacerbate health inequity. Participatory approaches require acknowledgement of and action to remove systemic and structural challenges, neutralization of power imbalances, and elimination of all forms of stigmatization and discrimination.
Lived experience is heterogeneous, complex and varied, often intersecting with other health conditions and diverse social factors. Meaningful engagement should account for intersecting identities, strive to be inclusive and accessible, and take into consideration the broad social context of being an individual with lived experience.
Lived experiences of NCDs, and mental health and neurological conditions often includes environmental, behavioural, commercial and other social determinants of health. Individuals with lived experience thus have diverse expertise, experience and views of a number of health conditions, which can be captured by meaningful engagement. All engagements should thus be as inclusive as possible, through active, transparent recruitment of individuals with diverse backgrounds, especially from groups that are underrepresented or marginalized. The individuals should include those living in poverty, in rural or under-resourced communities, Indigenous and First Nation populations, ethnic and minority groups, people living with disabilities, and people of different ages, such as adolescents, children and older adults. Such inclusivity will avoid overrepresentation of individuals with advantaged or privileged backgrounds or participation of the same individuals in several engagements. This should include more communities that are marginalized, enhancing discourse, and improving the relevance and effectiveness of co-created solutions to meet the needs of the wider population and addressing health inequities.
Meaningful engagement of individuals with lived experience should comprise a community-centred approach. Members of local communities provide essential, sustained, daily support to individuals with lived experience; they include families, formal and informal caregivers, support groups and organizations, religious leaders, and community health workers.
The principle of intersectionality, defined in the glossary as the interconnected nature of identity, relationships and social categorizations, encourages a shift from the over-medicalized clinical approaches of biomedical models to a broader bio- psycho-social model for global public health. Individuals with diverse lived experiences often have priorities and insights that transcend health conditions, geographical borders and socioeconomic factors. Consideration of intersectionality is essential, while also acknowledging individual contexts and the lived experience of specific health challenges. Such consideration will avoid perpetuation of the siloed approach in global public health. Member States, as duty bearers, must uphold their populations’ right to influence policies, programmes and services.
To avoid tokenistic engagements and to ensure inclusiveness and intersectionality, engagements with individuals with lived experience must be systematic and intentional through mapping and tracking all activities, building trust in communities and leveraging their networks to ensure diversity and representation. When there is limited capacity to recruit or include individuals with lived experience, priority should be given to those who were least represented in previous engagements. Inclusion only of individuals considered to be relevant by people in positions of power and influence should be avoided. Environmental barriers may impede or prevent meaningful engagement with some individuals with lived experience; therefore, the accessibility of consultations and participation must be considered and actions taken to reduce barriers to all engagements.
Meaningful engagement must be formally integrated and embedded into institutional and organizational practice and culture. Additional work is required to contextualize and adapt such work at regional and local levels to support implementation.
Meaningful engagement should be supported by sustainable financing for all engagements with individuals with lived experience remunerated at a rate equivalent to that for technical experts.
Lived experience is a form of expertise, and individuals with lived experience should be remunerated accordingly. The remuneration of technical experts and external consultants for participation in engagements should be applied on equal terms for individuals with lived experience. Funding should also be made available to improve access to both digital and in-person engagements and remove barriers to participation, such as facilitating child or dependant care. The funds should be provided to individuals without constraining conditions and allow for independent inputs within multistakeholder settings.
Financing should also be allocated for recruitment, engagement, capacity-building and related activities. Funding should be provided directly by the organization or institution within an established resource mobilization plan or as part of existing donor agreements.
WHO and Member States should explore expansion or inclusion of individuals with lived experience in relevant staff roles, aligned with measures to ensure diversity, equity and inclusion in their working environments.
In view of the lack of investment globally in NCDs and mental health, application of lived experience through meaningful engagement and other participatory approaches may be seen as a catalyst for finding additional resources. Sustained financing from a range of sources is essential to achieve the vision of the framework and the wider global goals for NCDs and mental health.
To address unequal power structures and systems, power must be redistributed and shared with people with lived experience. This can be achieved by creatingmore opportunities for participation, establishing safe spaces, and ensuring respect, inclusiveness and diversity in all roles, while establishing new models and systems.
To address systemic and structural power dynamics, which are barriers to engagement, WHO and Member States should create more equitable, inclusive, empowering opportunities for the participation of individuals with lived experience. Empowering individuals with lived experience to make decisions about their own health and well-being will respect the inherent right of individuals to do so and thereby reorient the balance of power in health systems and governance. This will require acknowledgement and a commitment to address long-standing economic, environmental, racial and gender inequalities that are reinforced by the structural, institutional, cultural, political and behavioural dimensions of power and oppression. By using participatory approaches, WHO and Member States can also address power asymmetries by promoting and practising critical “allyship” and taking stances on racism, oppression, colonialism and discrimination, with a rights-based, equitable approach to engagement.
Representation of individuals with lived experience is essential, especially of those who are marginalized, oppressed and disadvantaged. This does not necessarily mean only ensuring individuals with lived experience have “a seat at the table” but bringing the “table” to those who are most marginalized, such as by organizing additional engagements in local settings, rather than only at organizational headquarters or urban centres. This will ensure that individuals with lived experience can fully participate and take advantage of inclusive opportunities to shape agendas, priorities, strategies and decisions. While power redistribution may be difficult at first for those in power, it is fundamental to ensure that individuals with lived experience are empowered to participate fully.
The principles of inclusiveness and intersectionality will ensure representation of diverse individuals and an equitable balance of power for individuals with lived experience. Too few individuals with lived experience or too many from one demographic or with the same health condition could also create a power imbalance. When there are too few seats, more seats should be provided for individuals with lived experience with wider diversity according to gender, sexuality, disability, religious beliefs, ethnicity and other social factors to ensure a balanced power environment.
Stigmatization and discrimination take many forms and are major barriers to meaningful engagement. In all engagements, all forms of stigmatization and discrimination should be acknowledged, addressed and eventually eliminated to promote health equity.
An integrated approach can bring together lessons from several lived experiences and related health areas to address determinants of health inequity. This approach can strengthen areas such as primary health care and achieve UHC.
WHO and Member States should support capacity-building for individuals with lived experience in health literacy, provide access to relevant information and establish networks for data collection and knowledge exchange. WHO and Member States should also build their own capacity-building to support meaningful engagement, rights-based participatory approaches and address health inequity.
Meaningful engagement must be formally integrated and embedded into all relevant programme areas and processes of WHO and Member States to ensure sustained action and impact.
The human predicament
The current human predicament is a result of the cultural disease of super-human scale powered-up civilisation building endeavours, the origins of which can be traced back to the beginnings of modern human history and toxic social power dynamics.
The open question is how humans will treat each other and our non-human contemporaries on the journey towards being composted and recycled. Experiences may vary depending on the human scale cultures we co-create on the margins.
