SDG 5 aims to achieve gender equality and empower all women and girls. Browse books and journal articles relating to this SDG below and find out more on the UN Sustainable Development Goals website.
This chapter demonstrates how ailment mobilises concrete, embodied and emotional responses in immediate social encounters and care work, along with discussing the gendered, racialised and classed divisions of care labour that extend to a global scale. The relatedness and variance inherent in ailment – and care as a key response to it – mean that there is a large degree of unpredictability in the chain reactions that ailment creates. Moreover, as responses to ailment may include neglect, violence and humiliation, a variety of ethical and political identities and structures can ensue. Societal structures and the organisation of care work specifically affect and ail those who have less power, influence and money: typically, working-class women, racialised minorities and international migrants. The varying responses to ailment in the world may be imagined as an emergent and constantly changing network of relatedness and affects that organise societies. Within these local and global networks, those caring for others are also affected by their care relationships and may suffer various kinds of distress, which are discussed in terms of caregiver ailment. Political and institutional actors who ignore the relationality of care and often disregard the needs of the caregiver play a major role in engendering and perpetuating caregiver ailment.
This chapter introduces the concept of ailment, which is about generalised care needs, including the need for self-care. Ailment does not indicate an immediate dependency on others. Rather, it is a human condition and force that mobilises emotions, actions and relations. Responses to ailment extend from concrete encounters between human beings in the immediate environment to political and institutional responses in societies across the world. The political relatedness that ailment enacts in the world and the different kinds of social orders that emerge through different personal and collective responses to the needs of ailing subjects are discussed.
Deficiencies in old age care are some of the most pressing human rights concerns in mature welfare states.
This book radically challenges the ethics of viewing care as a tradeable commodity and introduces a novel framework for understanding and analysing social care through the concept of ailment. Providing examples from the British and Finnish welfare states, it demonstrates how ailment shapes societies from the micro to the macro level. Addressing the marketisation and financialisation of care, the authors bring to light increasing inequalities in care.
This book argues that ailment is part of human life and society, and therefore the politics of care should begin with a politics of ailment.
This chapter concludes the book by focusing on today’s circumstances, with ailing bodies having become sources of profit making and the ailments of their caregivers largely unacknowledged or misrecognised. It is time to change how humans are perceived. The notion of homo aegrotus – the ailing human – recognises ailment as a permanent and all-encompassing feature of societies. It generates a variety of responses and creates webs of connections between individuals, families, communities, regions and countries. When approaching the field of care with the concept of ailment, a new political regime becomes imaginable. The new political regime derives from ailment in its two senses: the existential state of human ailing, and the affective or responsive state of being bothered by it. The ailing earth is also implicated here, emphasising human interdependency with biodiversity and ecosystems and thus opening possibilities for research into and the development of sustainable, caring policies. From this perspective, large portions of modern societies appear to be built around ailment.
This chapter examines how the marketisation and financialisation of care are transforming and challenging the social and care policies developed during the heyday of the welfare state. Marketisation and financialisation significantly affect these politics of ailment by introducing the mechanisms of profit making, competition and choice as solutions to human ailment and by replacing the ailing subject with a market actor as the target of social policies. Nevertheless, ailment continues to be a mobilising force that simultaneously generates both social and care relations and market and financial activities. The problem with these trends and the neoliberal vision on which they rely is that the logic of the market is different from – and largely incompatible with – responses to ailment that are based on a logic of care. While businesses perceive ailment as producing unlimited market opportunities, they fail as to the more profound recognition of ailment as an existential human condition warranting ethically sound responses such as affordable care.
This chapter’s sections – ‘Sanctioning the ailing’, ‘Protecting the ailing workforce’, ‘Acknowledging ailment’ and ‘Failing the ailing’ – trace how ailment as a social force has historically manifested itself in social and care policies in western societies. In pre-modern Europe, workhouses and other disciplinary institutions were used to control and sanction ailing individuals. Later, social policies began to recognise the need to protect the ailing workforce to secure the demands of an industrialising world. After the Second World War, social and care policies began addressing ailment throughout the life course, and collective and public responses to the needs of ailing individuals expanded to several areas of life as part of the modern welfare state. The transformation of the welfare state and the austerity politics of recent decades have undermined the acknowledgement of ailment in social and care policies. Through this exploration, it is demonstrated how ailment creates various relations and responses and how these responses combine elements of care, control and profit making to different degrees, depending on the historical, political and social context.
The book has posed several questions about how self-determination is conceived, achieved, contested and materially lived through in (some) historical realities of sex/gender. My intention was not to answer all the questions posed, because we cannot securely retrieve them due to the productively fleeing, eluding, flowing, leaking and disappearing nature of sex/gender self-determination in complex assemblages developed vis-à-vis legal statutes, healthcare protocols and pedagogical cultures. I have instead tried to pose dilemmas, paradoxes and look at power games that assert forces within debates about sex/gender self-determination. Nonetheless, I have tried to draw out the singularities of trans, sex/gender expansive and intersex people and show how, in our examples, they connect to bioethics (in the form of research relations), biopolitics (in the forms of sex/gender assignments and the connected citizenship and policy frameworks), and the wider population (in their singularities). The one clear force that I wanted to highlight, even though this force is affected and affective differently in all these nomadic connections, is the birth designation made by physicians and recorded by parents. This led me to the questions: Is sex/gender assignment at birth fit for purpose? Do sex/gender assignments have a medical purpose? and What challenges can be levelled at the practice in light of human rights declarations surrounding the rights of people to their bodily integrity, autonomy and ‘self-determination’? I demonstrated that sex/gender assignment at birth is only ever a clumsy representation that cannot cope with those bodies that do not, will not, or indeed cannot be constrained within the parameters of those vague designations in use across the world.
The concept of ‘self-determination’ in social work, medicine, education, human rights and political theory functions on both molecular and molar planes of immanence. The term, however, is often treated as a transcendental phenomenon unconnected to the physical matter of the human drives (desire) to become. Deleuze and Guattari (2004) understand the molecular as the micro affective intensities, which can be produced in relation to macro communities and beyond, but this is complicated with the idea that communities can also become the molecular when talking about, for example, larger bureaucratic agencies, such as government, the United Nations or the NHS, technology, the environment and so on. DeleuzoGuattarian thinking provides an ontological basis for the analysis of multiple governance networks and allows for imaginative modes of non-representative democratic governance because of its refusal to homogenize the affective intensities into binary structure/agency arguments without denying either. DeLanda (2006, 2016) proposes that social complexity connected to governance networks can be thought through assemblage theory and is a valuable basis to conceptualize the heterogeneity of key affect, affecting and being affected by humans.
Each assemblage consists of molecular and molar configurations and exists as a collection of bodies, communities, organizations, technologies and de jure states. As I have argued elsewhere (Davy, 2019), the notion of an assemblage is helpful to understand human connections and relations with other humans, animals, objects, institutions and cultural artefacts. Moreover, an assemblage does not privilege the human (body) as the site where sex/gender and sexual desire is always located. Desire is produced at the interstices beyond the human body. The assemblage disrupts the notion of a unified sex/gender.
The concept of self-determination has a lengthy scholarly history. The concept has motivated a range of bioethical concerns; as such, the interpretations and thus the effects that result from utilizing the concept vary. This book considers key personal, political and pedagogical approaches to trans, sex/gender expansive and intersex people in various policy fields such as sex/gender recognition legislation, medical diagnoses, medical interventions and educational policies. This book also contemplates how self-determination relates to sex/gender productions, transitions and expressions, and how they correspond to current debates around binary sex/gender embodiment. I will consider throughout how diverse cultural practices and systems may still be (de)limiting trans, sex/gender expansive and intersex trajectories to self-determination. These are not dead ends though but produce new virtualities. This is because trans people are always becoming-trans, sex/gender expansive people are always becoming-sex/gender expansive and intersex people are always becoming intersex-people. This is the same for cis people too, who are always becoming-cis people. The relevant qualities that everybody has are not inherent, archetypal or phylogenetic but are desired in specific assemblages of becoming-human and/or becoming-social (Deleuze and Guattari, 2004).
We will ask if (self-)determining sex/gender is an effect of desire connected to coercive effects, and what this looks like. We will explore how legal, medical and pedagogical policies have more in common with each other than we may think and ask does each of these policy areas co-produce and affect human and non-human bodies? The basic response from a new materialist perspective, which I draw on throughout, must be ‘of course’.
In the last chapter I suggested that self-determination theory is a widely researched and an empirically evidenced theory of human needs fulfilment and motivation and offers a potentially valuable conceptual framework for understanding why the current policy environment has not led to the anticipated improvement in equity, quality and safety of clinical care with trans, sex/gender expansive and intersex people. I also looked towards a more sustained move towards patient-centred self-determination models of healthcare provision, regardless of whether that provision is privately or state funded.
In this chapter, I will look at how self-determination is affected by and affects medical self-governed institutions, the elevated professional and social position of physicians, and the UK’s development of a patient-centred approach to healthcare. This will not be an extensive genealogy of the UK system as that is too vast a subject to do justice to in a single chapter. Margaret Stacey (1992) has written an excellent detailed analysis of the importance of the role of the GMC in the UK in relation to the protection of both physicians and patients. Although Stacey’s book is almost thirty years old, it still holds much relevance in the ways that medical registering and physicians’ appraisals and revalidations have been and continue to be evaluated, and to some extent how the role of the patient/consumer functions (see also Quick, 2018; Gladstone, 2000). I will draw on some areas of contention that allow us to see some of the biopolitical assemblages that generate key forces in everyone’s self-determination efforts related to health (Irving, 2008).
