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.
Going forward – Big is Bad. Small is Beautiful. Less is More. Slow is Healthy.
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 generations. 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:
All of this can be understood without bizarre conspiracy theories. The overall system works as a cult of busyness and technological “progress”, which pathologies the beautiful diversity of life. This system has no appreciation for diversity, and zero tolerance for nuance.
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.
Demand avoidance in a transactionalised world
We did not evolve for a transactional world. We evolved to share our gifts with the world.
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.
This is well understood by many indigenous cultures in different parts of the world, but this knowledge, this deep wisdom has been actively suppressed.
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 creating more 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.
Onwards – Together!