Editor’s Note: This post was originally published on our sister site Mad in America, and is republished here with permission.
Do you know the nursery rhyme called “There once was a woman who swallowed a fly”? It describes responding to a problem with more and more cumulative absurdity. The woman in the rhyme swallows a spider to catch the fly, then a bird to catch the spider, and so on. This rhyme could be understood as a metaphor representing the prevailing modern notions of poor mental health and how to respond to it: an escalating series of biomedical interventions that don’t actually solve the underlying problem.
Psychiatry rarely questions the assumptions of their treatment. (“Spiders catch flies, so therefore the treatment will be effective.”) But, as in the rhyme, this simplistic understanding fails to take in the context of the problem.
Psychiatry assumes that there is a biological problem—yet undiscovered—causing people to experience distress. So, their treatments, based on this assumption, are biological—usually a drug, which can cause harmful effects that need to be treated with further drugs; when the drugs don’t have the desired effect, different drugs are prescribed, sometimes along with new diagnoses, with more adverse effects; when the symptoms persist, the treatments sometimes escalate to electroshock or deep brain stimulation, or experimental drugs like ketamine.
In a way, psychiatry is even worse than the nursery rhyme. At least the character in the story is trying to solve the cause of the problem—the fly. But psychiatry only focuses on the symptoms—never asking what caused them in the first place.
It is not always possible to simply improve conditions with immediate effect, for causes are multifactorial and tend to evolve over time. However, by locating the dysfunction within the individual through diagnoses and symptom control, there is a greater possibility that the inhospitable conditions in which many people live their lives will be overlooked and ignored, as they continue to endure and manage their negative impact.
My professional work involved adult survivors of childhood sexual abuse, which taught me that positioning human responses to distress as mental “illness, disorder, or disability” is questionable. Anxiety levels were understandably high for survivors, often leading to the counselling process being an unbearable ordeal. I worked alongside counsellors and clients, teaching both about the function of the human survival system and its operation, reframing anxiety as functional and protective, rather than dysfunctional and pathological in origin.
Until this point, many survivors had been told that their complex needs were psychiatric in origin, i.e., located in their own faulty brain chemistry, rather than understandable expressions of distress in response to abuse and its broader effects on their relationship with themselves and others.
Many of the individuals I worked with were prescribed multiple medications, often for what doctors described as “medically unexplained symptoms.” Pain, migraines, mobility issues, inflammatory diseases, auto-immune symptoms, weight gain, fatigue—all were often indistinguishable from iatrogenic symptoms (side effects, or simply effects of medication). It was difficult to figure out precisely what the medicines were supposed to be treating. Survivors who were now experiencing medication side-effects believed these harmful effects were organic physical illness. They had never been told that these were effects of the drugs. Concurrent syndemic clashes were seen as the norm.
The resulting rampant polypharmacy issues came as a shock to my colleagues and I, who were mostly person-centred counsellors grappling with clients who had been harmed and subsequently written off by the medical system.
My fellow project managers and I began to collect this data and ran a conference on October 25th, 2012, for GPs across Scotland to make them aware of this issue.
All the individuals attending our services had been stuck in the psychiatric system for a long time with long-term diagnoses of chronic psychological conditions. These individuals were brothers, sisters, sons and daughters, parents, musicians, chefs, artists, academics. Some had been athletes in their day. Once labelled and treated, often in the form of incarceration and forced medication, they were never the same again. These people had not just swallowed a spider to catch the fly—they had been told to swallow a horse in the form of diagnosis and medication, and it was destroying them.
When I began an MSc in Global Mental Health and Society at the University of Edinburgh, I hoped to find evidence of new approaches at the global level. However, it became clear that psychiatry is driven to spread, world-wide, many of the same approaches that have been developed and implemented in high-income settings. This feels alarming, because in those same high-income settings, where the number of people receiving treatment has increased substantially, the rates of diagnosis and distress also appear to be increasing year on year. Doesn’t this indicate that something about this response to poor mental health is not working?
However, there are other amazing projects taking place that don’t rely on exporting that same biomedical model around the world. One project, based in Kolkata, was called Iswar Sankalpa. The project helped to create a bare-bones supportive and creative structure around individuals with ”psychosocial disabilities” who live on the streets.
What inspired me about the project was the “agenda-less” ethos: they were neither nudged to reform, to improve, or to go home—they were offered basic medical, pastoral, and material care (showers, clean clothing, etc.), and were listened to. Pathways to support or change, such as opportunities for community involvement and training and development, were available if it was desired by the individual. The project also engaged support from willing members of the wider community and felt respectful, thoughtful and considerate.
Research Project
This example encouraged me to look at grassroots projects through a socioecological framework.
I looked at the projects Burans, based in India, Buena Semilla in Guatemala, and the Camerados, a UK based project. Although each of these projects was different in approach, what they had in common was that each was deliberately situated in the social and geographical heart of communities. Physical and emotional space was created for people to come together to connect and commune. Each had a participatory approach with minimal hierarchy, and recovery agendas were set co-creatively by individuals engaging with the service in collaboration with workers in the organisations.
Approaches were group-based, encouraging connection through peer support. People from the community were invited to share their experiences and struggles, and to begin to recognise some of the impacts of marginalisation and discrimination upon mental health. Facilitated discussions on a wide range of topics chosen by the group led to enhanced connection, relationships, and the identification of individual and group qualities and skills which often resulted in strengthening relationships within the broader community. People were invited to recognise the connections between their lives and their emotional and psychological responses. Each of these projects also placed recognition upon the assets already present in the community, such as common spaces, environmental beauty, cultural history and wisdom, skills and abilities, and how they belonged to and could be built upon within the community, by the community.
What I found in the projects that I researched was an emphasis on community and connection. Participation and co-production were present in the ethos of each organisation, and empowerment was encouraged at the individual and collective level through knowledge sharing. Listening and speaking was encouraged and led to people feeling heard and understood. This for me represented person-centredness in action.
Buena Semilla began as a project in response to high levels of infant and maternal mortality being suffered by the indigenous population in hard-to-reach areas of Guatemala. What was quickly apparent were the extreme levels of marginalisation and dispossession being suffered by the community, which was leading to poverty, deprivation, and disconnection from the broader socioecological environment. Healthcare was also largely inaccessible. Stresses and strains, as well as a disconnect from ancestral heritage and values had contributed to a machismo culture of violence and substance abuse.
“People began to realise the contributions that they were able to make”
Bringing together the women of the community to sit together in dialogue circles, talking and sharing stories, recognising skills and strengths, offering support to one another, led to the beginning of empowerment. Access to health care and other social goods was fostered and supported by the organisation, and gradually the women began to regain a sense of collective strength. The men of the community, though cautious at first, began to attend the community group meetings. Recognition of indigenous cultural heritage led to the regaining of community pride and the rejection of the legacy of imposed colonial values. People began to realise the contributions that they were able to make. From these beginnings, small enterprises were begun, and identities were reclaimed. These changes resulted in a decrease in domestic violence and substance abuse, while maternal health and infant mortality measurably improved.
Project Burans also emphasises facilitating connection in marginalised communities. Young people who had difficulty accessing education, who were in psychosocial distress, were brought together to identify their challenges with peer support workers. The project epitomised co-production. Group members were instrumental in creating visual communication tools which were meaningful and culturally relevant to them in their specific community settings. This enabled people who’d had little access to education to connect with the project. Standard recovery models were eschewed in favour of independently constructed goal-setting, which was supported by peer workers. The groups created their own agendas with regard to recovery, skills development, and future aims. Another arm of the project involved the development of peer support and skills for caregivers in the community, offering support to those who struggle with minimal resources.
The Camerados is described as more of a movement than an organisation. Its ethos is simple: to create spaces in which people can come together to commune, share, offer support, recognise strengths, and build community. This is described as people “looking out for each other.” They have set up such spaces, called “public living rooms,” in a vast array of social and workspaces, including hospitals and prisons. A by-product of such spaces is that those involved report improved mental health and wellbeing, as well as a sense of connection and belonging that they felt was previously absent.
Recognition of the impact of socioecological conditions, as opposed to an illness of the brain theory, appears to help people to make meaning of their experience in the environment as opposed to considering themselves as dysfunctional in the environment. My thoughts as I researched these organisations were about the conditions that were being created and the positive impact of such deliberately cultivated spaces. There is recognition of the value of such projects by the movement for Global Mental Health and the World Health Organisation (as they simultaneously attempt to impose regulations upon such projects through their recommendations). At the same time, there are also large infrastructures being established to deliver less socially-based models of mental health support in the form of the biomedical model, despite its obvious flaws and failings.
Prevention
Although many organisations are doing amazing work, they often reside at the treatment end of the human experience. Help with rebuilding connection and community and fostering an improved environment tends to come after psychological deterioration rather than in prevention of it.
If, as acknowledged by the movement for Global Mental Health, the burden of cost of poor mental health to the global economy is truly high, and funding for mental health services is hard to come by, why is prevention largely missing from the Global Mental Health narrative?
If we acknowledge the importance of conditions for “recovery,” then we perhaps also need to be aware that we are overlooking the original conditions in which people are expected to live in the first place.
“Being honest about the causal effects of poor socioecologies upon mental health would be a good starting point when looking at preventative approaches”
The more I explored the geographies and socioecology’s of places where Global Mental Health interventions, in the form of diagnosis, medicine, and short-term problem-solving therapies, are being established, the clearer it became that deprivation of citizenship, in the form of discrimination, marginalisation, lack of access to basic health care, the impacts of migratory policies, and barriers to education leading to material and social poverty, were obvious causes of deteriorating mental health.
Despite acknowledging the social aspects of distress, the preferred term used by the movement for Global Mental Health and the WHO,” psychosocial disability,” still locates the problem as a disability within the individual, rather than in the broader socioecology. The connection of the quality of mental health to material and environmental conditions remains obscured.
Being honest about the causal effects of poor socioecologies upon mental health would be a good starting point when looking at preventative approaches. Instead of setting up expensive infrastructures to treat symptoms, empowering people with knowledge about such connections helps people to make sense and meaning of their suffering. Rather than being left under the illusion that their responses are dysfunctional, people can at least begin to recognise where the dysfunction really lays.
Conclusion
We know that the quality of living conditions is vital to the ability of human beings to thrive, so there needs to be more focus on creating conditions that embody human rights, person-centred, community-focussed, fully participatory environments in the first place. By continuing to fail to recognise distress as a barometer of poor conditions, we risk exporting a destructive model of symptom management that will leave people in such conditions with the added burden of a diagnosis of malfunction located within their person.
do we have a “poor conditions in which we expect people to live while telling them that their responses are psychological illness” crisis?
My research so far has confirmed for me that the conditions in which we live our lives as human beings largely dictate whether or not we are able to thrive physically, emotionally, and psychologically. Acknowledging this leads me to conclude that poor mental health is a by-product of poor conditions. This leaves me in conflict with the Global Mental Health agenda, where the emphasis is on providing better access to psychological support. I feel that while psychological support is very important, the evidence is that biomedical treatments beget more treatments, to no avail, if causal factors remain unaddressed.
As I contemplate the direction of my research PhD, I’m conscious that my question is: Do we really have a Global Mental Health crisis on this planet, or do we have a “poor conditions in which we expect people to live while telling them that their responses are psychological illness” crisis? This question ties in with the beginning of my journey into working in the field of mental health, where my own experience of diagnosis and treatment created a barrier to recovery which needed to be dismantled before recovery could take place. I feel that a similar dismantling of a psychiatric system built on the flawed premise of brain malfunction may be necessary for the benefit of Global Mental Health.
THankyou for your thoughtful blog and the research that you are doing. I like the analogy here and agree wholeheartedly with your conclusions. Prevention is always better than cure but sadly we have to work from where we are. Two pronged approach, rescuing the harmed and preventing the harm from happening in the first place.