Drawing on insights from two global symposia that together reported on governmental responses to COVID-19 in 75 countries, this chapter traces two cross-cutting themes that shed greater light on varied impacts on civil liberties and socio-economic rights. First, it considers whether a constitutional state of exception is preferable to using ordinary legislation in managing the impacts on civil liberties of a health and social crisis. The chapter suggests that whether countries are successful in limiting the potential for abuses is best understood in light of socio-historical factors, as well as informal rules that underpin normative and institutional legitimacy, as much as the formal legal vehicles used. Second, the pandemic has exposed the effects of decades of privatization, reduced social spending and rising inequality on health. The chapter suggests that the ways laws structure financing and organization of health systems (public health and care) are as critical to understanding responses as legal recognition of health-related rights. With respect to both civil liberties and health-related rights, the chapter argues that the key to understanding the varied impacts and responses to COVID-19, as well as to consolidating the democratic rule of law post-pandemic, is examining the wider contexts and contingencies that shape how formal legal rules operate.

There has been little interdisciplinary discussion between the global health and disability rights fields regarding the relevance of article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) to States parties’ obligations to respect, protect and fulfill the right to health under international law. While disability rights advocacy has focused largely on coerced treatment and abuses in facilities, the global health and development communities’ attention has been focused on unmet need for mental health care. This chapter argues that conceptualizing health in terms of rights, just as disability, requires upending aspects of the biomedical and conventional public health paradigms. In turn, once the incompatibility of health and disability rights is dispelled, implementing supported decision-making (SDM) for persons with psychosocial disability reveals important aspects needed for constructing health systems as inclusive democratic social institutions more broadly. SDM and substituted decision-making should not be seen as dichotomous options when a crisis arises, but rather in terms of a range of options available for a range of disabilities, which is supported by the financing and organization of the health system.

Introduction

In the six decades since the Universal Declaration of Human Rights (UDHR) was proclaimed as a ‘common standard of achievement for all peoples and all nations’, human rights has become the hegemonic discourse for social emancipation around the world. Yet, from its inception the legalism and abstraction of the international framework have posed challenges for local resistance movements who sought to use rights in their social struggles, including struggles relating to health. Further, it has often been difficult to find allies within the health field itself, pervaded as it is by the paternalism of clinical medicine and the utilitarianism of conventional public health.

It is only in the last fifteen years or so that countries have seen a proliferation of rights-based movements for health. All of these health rights movements share a common focus on issues of equality and non-discrimination, accountability and participation by the people whose lives are affected by health programmes. A central notion across all rights-based approaches to health lies in converting the beneficiaries of health and development programmes into claims-holders who can demand that the state, or other actors, comply with certain obligations.

INTRODUCTION

In 1941, President Franklin D. Roosevelt proclaimed “freedom from want” to be one of the four essential liberties necessary to achieve human security. The polio-stricken president included in his definition of freedom “the right to adequate medical care and the opportunity to achieve and enjoy good health” (Roosevelt 1944, 41). This expansive vision of a right to health, which included both medical care and the preconditions to health, was subsequently incorporated into the Universal Declaration of Human Rights (UDHR) and has since been enshrined in many international and regional human rights treaties.

Roosevelt's vision was never fulfilled because the United States turned its back on economic and social rights. Despite spending far more per capita on health care than any other country, the United States continues to have some of the poorest health indicators in the industrialized world (Commonwealth Fund 2007). It is the only industrialized nation to deny its citizens universal access to medical services. Fully one-third of the population lacks health insurance for at least part of the year, and although this percentage is expected to decrease substantially as a result of the recently passed Patient Protection and Affordable Care Act (PPACA), those reforms still do not guarantee universal access. Add to this the lack of services for many Americans, discrimination in health care provision and inequitable outcomes between different racial groups, and pharmaceutical and insurance costs spiraling out of control, and it is clear U.S. health care is in a profound predicament.