Volume 22/1, June 2020, pp 1 – 6
Audrey Chapman, Carmel Williams, Julie Hannah, and Dainius Pūras
When we planned the special section of this issue and distributed our call for papers, we wanted to present a collection that would reflect our view that not only is there is no health without mental health, but there is no mental health without human rights. We were hopeful that papers from around the world would illustrate human rights-based approaches to easing mental distress, critique the status quo in how we understand and respond to mental health, and illuminate the scale of suffering that arises from our unequal, racist, discriminatory, and violent world. The issue was timed to coincide with guest editor Dainius Pūras’s completion of his second and final term as United Nations (UN) Special Rapporteur on the right to health. Mental health has been a special focus of his mandate, resulting in several reports on the subject, and he also contributed to the two UN resolutions affirming mental health as a human right.[1] In his most recent report to the UN General Assembly and in his final report to the Human Rights Council, Pūras examines the social determinants of mental health and calls for discussions and actions that are “rights-based, holistic and rooted in the lived experience of those left furthest behind by harmful sociopolitical systems, institutions and practices.”[2] Of great relevance now to our post-pandemic world, he stresses that these discussions are needed at global, regional, and national levels to better understand the collective failures of the status quo in mental health systems.
Indeed, one of the critically important lessons the world has learned in 2020 is how important global conversations, social justice activism, and community cooperation are. COVID-19 has cruelly demonstrated our interconnectedness, our shared humanity, and our shared suffering. It has equally illuminated the injustice of our economic and political systems and the cruelty of the inequality and systemic discrimination they have produced. The UN and many others are also acknowledging the long-lasting impact that the pandemic will have on our mental well-being.[3]
So the timeliness of this special section could not be more appropriate. We urgently need these conversations to address the inter-relatedness of human rights and to consider the real causes of mental distress. The pandemic sadly provides ample evidence of human rights failings that lead to unequal and unfair health outcomes. Discrimination, disempowerment, and social exclusion are producing excessive COVID-19 death rates in racial and ethnic minority populations across the world; the same patterns will be seen in the mental distress caused by the pandemic. Likewise, it is essential to develop an evidence base of the disastrous harms created by COVID-19 public health policies—political choices that have caused unimaginable suffering among society’s most marginal, including (but not limited to) the elderly, those who are homeless, people detained in prisons, and people living in psychiatric facilities and institutions and care homes. Technical solutions being proposed to these structural problems and policy harms—such as vaccines, telemedicine, and apps for well-being—are woefully inadequate.
Right now, there is both an urgency and an opportunity to change the way mental health services are framed, governed, and delivered, worldwide. We anticipate that the papers in this issue will be useful for policy makers and health and social workers who want to embed human rights and adopt right to health approaches to the changes that must take place in mental health. One of the aims of this special section is to identify alternative mental health approaches to the reductionist biomedical paradigm that has contributed to the exclusion, neglect, coercion, and abuse of people with intellectual, cognitive, and psychosocial disabilities, and those who deviate from prevailing cultural, social, and political norms. In our call for papers, we wrote that the status quo, preoccupied with excessive biomedical interventions, including psychotropic medications and non-consensual measures, is no longer defensible.
The pandemic presents not just the opportunity but the necessity of providing a different form of care and support for the millions of people who are now suffering its consequences. Given the anticipated need for mental health support, there is no possible way that dominant models can cope with, let alone address, the demand. The pandemic is providing a profound illustration of interconnected determinants of mental health: the impact of loss of freedoms, for example, on people having to stay at home when that home may be violent; the impact of loss of employment on people who are already poor, living on minimum wages without health insurance and perhaps in crowded homes; the impact of risk exposure to COVID-19 on health workers and other “essential workers” who are from minority groups and suffer discrimination in the workplace and are given no option but to work; the loss of access to nutrition for the school children whose most nutritious meal was provided by their school.
A rights-based approach to mitigating the mental health consequences of a global health and economic crisis responds to the ways these hardships intersect, ensuring that people who lose their income and others in financially precarious positions are protected by government support packages, that people do not lose their homes, and that all social rights are protected. These and similar measures are often effective at protecting mental health, and especially in today’s COVID-19 environment.
Civil society, particularly movements led by users and former users of mental health services and organizations of persons with disabilities, have brought attention to the failures of traditional mental health services to meet their needs and secure their rights. They have challenged the drivers of human rights violations, developed alternative treatment approaches, and recrafted a new narrative for mental health. This has resulted in a paradigm shift, including an evolving human rights framework in mental health. The adoption of the Convention on the Rights of Persons with Disabilities (CRPD) in 2006 laid the foundation for that paradigm shift, with the aim of leaving behind the legacy of human rights violations in mental health services.
The right to the highest attainable standard of health has much to contribute to advancing this shift and provides a framework for the full realization of the right of everyone to mental health. But progress has been slow. Effective, acceptable, and scalable treatment alternatives remain on the periphery of health care systems, deinstitutionalization has stalled, and the insufficient mental health investment continues to be focused predominantly on a biomedical model, despite increasing global recognition that mental health is a human development imperative.
We hope that readers find this collection of papers useful. It demonstrates the role of human rights as envisaged by people using mental health services, by people providing services, and by a broad movement seeking to shift the entire paradigm of mental health away from focusing on biology and brains to focusing on relationships and other social determinants of health. Mental health services cannot be transformed and cannot satisfy the need for them without directing attention and funding toward the structural causes of poor mental health and distress. Rights-based and population-based approaches to mental health promotion are those that have moved health systems beyond individualized responses toward action on a range of structural barriers and inequalities (social determinants) that negatively affect mental health.
Inadequacies of the biomedical paradigm
The first cluster of papers documents some of the inadequacies of the current reductionist psychiatric biomedical paradigm. This approach to mental health is preoccupied with excessive biomedical interventions, including psychotropic medications and reliance on non-consensual measures that have contributed to the exclusion, neglect, coercion, and abuse of people with intellectual, cognitive, and psychosocial disabilities. In their paper, Linda Steele and colleagues draw on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates to identify the daily facilitators that contribute to the confinement of people with dementia in Australian care homes. They argue that micro-level interrelated factors contribute to human rights abuses of people living with dementia by limiting their freedom of movement and community access. Petr Winkler and colleagues report on a nationwide study in which multidisciplinary teams using the World Health Organization’s QualityRights toolkit conducted interviews, analyzed internal documents, and observed practices to evaluate the quality of care in Czech psychiatric hospitals. The study concluded that none of the CRPD articles was fully adhered to in these hospitals and that substantial investments are required to reach a more adequate adherence to the CRPD.
Other papers explore the causes of inadequacies in mental health services. Faraaz Mahomed focuses on the underprioritization and underfunding of mental health because it is a neglected priority of policy makers and funders at the national and international levels. He also cautions that as policy makers seek to “scale up” mental health and reduce “treatment gaps” in the wake of COVID-19, there is a need to ensure that increased funding does not replicate the current overemphasis on the biomedical model.
Jenifer Wogen and Maria Teresa Restrepo discuss the stigmatization, discrimination, and negative stereotypes that individuals with mental health problems, including those with drug dependence, suffer and how stigma affects their treatment and health care. They look at the roles played by policy change and the decriminalization of drugs in addressing and reducing stigma, and improving mental health. Lisa Cosgrove and Allen Shaughnessy are critical of industry’s influence on psychiatry, for it has contributed to the current medical model that overemphasizes biomedical treatments and underappreciates the social and psychosocial determinants of health and the need for population-based health promotion. Their paper argues that a robust rights-based approach to mental health is needed to overcome the manipulative effects of commercial interests in the mental health field.
Learning from rights-based approaches
Another cluster of papers considers new approaches that are more consistent with human rights. A perspective contributed by Michelle Funk and Natalie Drew Bold introduces the World Health Organization’s QualityRights initiative, and it is included in our special section as a useful resource for practitioners. This approach and framework for promoting mental health systems, services, and practices prioritizes respect for human rights consistent with the CRPD, and its use is demonstrated in the paper by Winkler and colleagues. Lucas Trout and Lisa Wexler’s paper on youth suicide in indigenous Arctic communities identifies suicide as psychogenic on the one hand and as an index of social suffering on the other. The paper draws on structured interviews and ethnographic work with health professionals in the Alaskan Arctic to examine the inadequacies of the health systems that currently shape clinicians’ practices of care. They recommend linking caregiving to the health and social equity agenda of social medicine in order to operationalize commitments to health as a human right. Ursula Read and colleagues draw on ethnographic and participatory research in urban and rural sites in Ghana to underscore the importance of social and economic rights, especially the right to work, in protecting the rights of persons with mental illness. The paper evaluates the challenges of implementing mental health, disability, and labor legislation and discusses the potential of practices of solidarity and social activism to promote the rights of people with mental illness.
Petr Stastny and colleagues, including guest editors Julie Hannah and Dainius Pūras, explore critical elements of rights-based support for individuals undergoing serious mental health crises. The paper proposes a set of nine critical elements underpinned by human rights principles to support a person experiencing significant emotional distress related to mental health problems of psychosocial disabilities. They urge that these nine elements be used as building blocks for designing services and systems that promote effective rights-based care and support. Despite the frequency of calls for a human rights-based approach to mental health, there are few documented attempts to use such approaches, nor assessments of their degrees of success. We therefore welcome Emma Broberg and her colleagues’ evaluation of a pilot study of their human rights-based approach to psychiatry in Gothenburg, Sweden. They discuss the human rights principles used and are open about difficulties they encountered, such as realizing meaningful participation and challenging the hierarchies of different professions within care. Their paper reflects on ways to make human rights-based methods sustainable in a large organization.
New paradigms promoting reform
Civil society movements led by persons with disabilities have developed alternative treatment approaches and, by doing so, have contributed to a paradigm shift. The Hearing Voices Movement, an international grassroots movement that aims to shift public and professional attitudes toward experiences such as hearing voices and seeing visions—which are generally associated with psychosis—is one such example. Rory Neirin Higgs’s paper argues that incorporating this perspective into mental health practice and policy has the potential to foster greater understanding and respect for consumers and survivors diagnosed with psychosis, while opening up valuable avenues for future research.
The reform agenda is also promoted by recognizing the importance of traditional health systems and cultures for the well-being of local communities¾something often overlooked in contemporary health systems and models of mental health care. José Carlos Bouso and Constanza Sánchez-Avilés discuss the need for the global mental health movement to recognize the role of traditional medicines and healers, particularly in Global South countries where traditional healers are far more numerous than mental health workers and constitute the main health resource for local populations.
Some papers in this section describe the difficulties inherent in adopting new models more consistent with human rights. Jasna Russo and Stephanie Wooley examine the implications of human rights approaches that lack a theoretical framework when trying to counteract the hegemony of the biomedical model of mental illness. They suggest that the task of implementing the CRPD requires not just reforming psychiatry but rather “an entirely different approach to madness and distress” and point to the indispensability of first-person knowledge in developing and owning a broader agenda for change. Laura Davidson addresses the difficulties of trying to adopt a complete prohibition on the use of coercion, consistent with the requirements of the CRPD. She proposes the need for interim mental health legislation that will facilitate a move toward a complete ban on psychiatric coercion. She also urges the UN committee overseeing the CRPD to issue a general comment providing “reluctant permission” for the progressive realization of respect for articles 12 and 14 of the CRPD. Article 12 recognizes the equal rights of persons with disabilities before the law and their right to exercise this legal capacity. Article 14 sets forth the rights of persons with disabilities not to be deprived of their liberty and security.
Finally, Bram Wispelwey and Yasser Abu Jamei’s paper on the Great March of Return documents the ways in which the Gaza mass resistance movement protesting the Israeli blockade provides an opportunity to develop an understanding of the psychosocial consequences of community organizing and mass resistance. They comment on the need for holistic mental and physical health care for community members affected by the events of the Great March of Return and the ongoing dire situation in Gaza.
Conclusion
The 15 papers in this special section give us reason for cautious optimism. Optimism in that globally, mental health is emerging slowly from a Dickensian past, tarnished with human rights violations, to a more enlightened era where human dignity, equality and justice, and empowerment are increasingly central to reform efforts and advocacy. Cautious and vigilant we must remain as calls for mental health reform and expansion become live and viable political issues, thanks in part to the global mental health movement. This cautious optimism is equally critical today, as the demands of social justice movements, including Black Lives Matter, to decarcerate and divest from corrupt criminal justice systems are finally (and rightfully) receiving political attention. While such calls to decarcerate and reinvest public spending toward community services, including mental health, are an essential response to racist and coercive criminal justice systems, it is vital to remember that mental health systems around the world emerged from and retain that same racist and coercive patina.
While COVID-19 didn’t create inequalities or racism, much like natural disasters and disease outbreaks before it (such as Ebola and HIV), it has exposed the toxic foundations and institutions of our society: racist, classist, sexist, and intolerant. This legacy, which places our collective well-being under strain every day, has produced an infrastructure of exclusion, coercion, and incarceration that breeds systemic and widespread human rights violations. This special section aims to illuminate the human rights dimensions of this context—and though we have fallen short of exposing more explicitly the racial and gender dimensions, we hope that this is merely the beginning of an ongoing scholarly conversation.
In the wake of COVID-19 and the remarkable worldwide community activism of Black Lives Matter, questions are emerging about how to decolonize our broken systems and reimagine something different. Mental health is part of that discussion and must be part of a reimagined future. The global debates around mental health—including the often competing visions of activists, governments, Big Pharma, psychiatry, and persons with lived experience—will shape our post-pandemic future in many ways. As the editors of this special section, we believe that these debates could not come at a more important time. All governments are presently having to design and implement policies to support people, especially poor and marginalized people, who have suffered huge personal and financial losses. Here is their chance to reduce the mental health distress arising in an unfair world. We believe that the human rights lessons from the papers in this special section offer much guidance.
Audrey Chapman, PhD, is Healey Professor of Medical Ethics, UConn School of Medicine, USA.
Carmel Williams, PhD, is Executive Editor, Health and Human Rights Journal, Boston, USA.
Julie Hannah is Co-Director of the International Centre on Human Rights and Drug Policy and a member of the Human Rights Centre, University of Essex, UK.
Dainius Pūras, MD, Clinic of Psychiatry, Vilnius University, Lithuania, is the United Nations Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of health.
Please address correspondence to Audrey Chapman. Email: achapman@uchc.edu.
Competing interests: None declared.
Copyright © 2020 Chapman, Williams, Hannah, and Pūras. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.
References
[1] See, for example, D. Pūras, Report of the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, UN Doc. A/HRC/35/21 (2017); D. Pūras, Interim Report of the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, UN Doc. A/73/216 (2018); D. Pūras, Report of the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, UN Doc. A/HRC/41/34 (2019); Human Rights Council, Res. 32/18, UN Doc. A/HRC/RES/32/18 (2016); Human Rights Council, Res. 36/25, UN Doc. A/HRC/36/25 (2017).
[2] See D. Pūras, Report of the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, UN Doc. A/HRC/44/48 (2020).
[3] “UN leads call to protect most vulnerable from mental health crisis during and after COVID-19,” UN News (May 14, 2020). Available at https://news.un.org/en/story/2020/05/1063882; D. Pūras, “COVID-19 and mental health: Challenges ahead demand changes,” Health and Human Rights Journal (blog) (May 14, 2020). Available at https://www.hhrjournal.org/2020/05/covid-19-and-mental-health-challenges-ahead-demand-changes.