Introduction

Throughout our co-produced project, Life, Death, Disability and the Human: Living Life to the Fullest (ESRC 2017– 2020), disabled children and young people living with shortened life expectancies have readily emphasized their human worth, value, and desire for the future. They have done so in disabling cultures that routinely deny them opportunity, access, and expectation. Perhaps not surprisingly, our conversations with disabled young people – and our interpretation of them – became more complex upon the onset of the COVID-19 global pandemic. Suddenly thrown into a moment where all lives became (more) vulnerable – an already-lived reality of many of the young people in our project – it was also a time where cultures of ableism and disablism were made more explicit, and existing inequalities exacerbated. For clarity, we use the terms ‘ableism’ and ‘disablism’ throughout this chapter. Ableism relates to the material, cultural and political privileging of ability, sanity, rationality, physicality and cognition (Braidotti, 2013), while disablism is the resultant oppressive treatment of disabled people (Slater and Liddiard, 2017).

In this chapter we share co-researchers’ own blog posts and writings on their experiences of living through a pandemic. Importantly, young people’s voices explore the (new) ways in which they have made sense of risk and threat, from the virus itself, but also from discriminatory emergency policymaking, compromised access to health resources, and a general lack of governmental support – all of which has affirmed the disposability of disabled and vulnerable lives in contexts of dis/ableism.

“I know full well in this COVID-19 pandemic that my life is not one that will be saved”: managing discourses of human worth

COVID-19 began with early public health messages that only the elderly and those with existing health conditions are most at risk of serious illness or death. Such ontologically violent messages quickly sought to reassure an overwhelmingly anxious public at the expense and distress of some of those considered the most vulnerable. Further, government ministers affirmed herd immunity as an initial key strategy: the concept of allowing publics to be exposed to a virus, in the hope that spreading it among those who are at low risk means that a large part of the population becomes immune.

CHAUCER'S EARLY FORMALLY experimental love-complaint Anelida and Arcite (ca. 1380) looks like a try-out— the poem is apparently unfinished—for his later tragic romance Troilus and Criseyde (ca. 1382), although it memorializes a woman betrayed by a man, rather than a man betrayed by a woman, and its setting is Thebes, not Troy. Invoking the aid of the classical gods Mars, Bellona, and Pallas Athena, the narrator declares that he will write an English version of the classical story of Queen Anelida and her faithless lover, the Theban knight Arcite, because that story is one that

The idea that writing preserves the memory of stories that would otherwise be forgotten due to the ravages of time is of course common in both late antiquity—in Horace's Odes, for example—and the Middle Ages. In his Etymologies, the Spanish encyclopedist Isidore of Seville (ca. 560–636) claims that “[t] he use of letters was invented for the sake of remembering things, which are bound by letters lest they slip away into oblivion” (1.3.2). But although Isidore appears to suggest that writing is merely a support for the oral faculty of memory, the critic Mary Carruthers argues that medieval texts make no distinction in kind between “writing on the memory and on some other surface,” that is, they not only view writing as a form of memorization but memory itself as a form of writing. This is an important corrective to the idea that memory in the Middle Ages was unreflective and that it had an organic connection to lived experience. Although Isidore refers to “things” in general, rather than “noble stories,” he later yokes the “monument” (a commemorative object, such as a literary text) and memory through their shared etymology: “both ‘monument’ and ‘memory’ (memoria) are so called from ‘the admonition of the mind’ (mentis admonitio)” (15.11.1). This etymological convergence underlines the idea, crucial to medieval thought, that there is an ethical imperative (mentis admonitio)—and, we might also argue, a political imperative—to remember.

Secondary school teachers are a natural constituency for expanding the reach of Chaucer Studies, and there are nnunmerous mechanisms, models, and resources already in place to help us reach them

Introduction

The principle of ‘Greater Involvement of People Living with or Affected by HIV/AIDS (PLHA)’ declared at the 1994 Paris AIDS Summit provided widespread international commitment (in rhetoric at least) to the participation of people living with HIV in tackling the epidemic at all levels. Organisations and networks of PHLA have grown rapidly in eastern and southern Africa in recent years in order to campaign for their rights to health. Research in Tanzania and Namibia has revealed that care is often a two-way process of both giving and receiving care, based on reciprocal, interdependent relations between PLHA and family members (Evans and Thomas, 2009). PLHA may provide home-based care for partners, children, other family members and peers with HIV, as well as receiving care themselves. Such interdependent caring relations blur conventional boundaries and assumptions about the needs and interests of ‘care givers’ and ‘care recipients’, while simultaneously revealing interconnected dependencies and power inequalities at a range of spatial scales.

This chapter adopts an ethics of care perspective to explore PLHA’s caring relations and participation within families and communities in Tanzania and Uganda and draws partly on ideas discussed in Evans and Atim (2011). We discuss the findings of three qualitative studies. The first two studies (conducted by Ruth Evans) focused on children’s caring roles in families affected by HIV; the first was based on interviews with 20 mothers/female relatives living with HIV, 22 young people who cared for them and 13 non-governmental organisation (NGO) workers in rural and urban areas of Tanzania. This was part of a larger study funded by the UK Economic and Social Research Council that investigated the experiences, needs and resilience of children caring for parents and relatives with HIV in Tanzania and the UK (see Evans and Becker, 2009 for further information). The second study was focused on sibling care giving in child- and youth-headed households in Tanzania and Uganda, based on interviews, focus groups and participatory workshops with a total of 73 participants, comprising 17 orphaned children and young people who were caring for their siblings, 17 of their younger siblings and 25 NGO workers and 14 community members. This study was funded by the University of Reading and the Royal Geographical Society (with the Institute of British Geographers) (see Evans, 2011; 2012 for further information).

Introduction

This chapter provides insight into young people's caring relations and transitions within what is often considered a particularly ‘troubling’ familial context in both the global North and South: living with HIV. I analyse the findings from two qualitative studies of young people's caring roles in families affected by HIV in the UK, Tanzania and Uganda from the perspective of a feminist ethics of care, emotion work and life course transitions.

Since the 1990s, research in the global North has documented the roles and responsibilities that children undertake within families and the negative (and sometimes positive) outcomes that caring for a parent with an impairment or chronic illness may have on their education, health and emotional well-being, leisure activities, social lives, and transitions to ‘independent adulthood’ (Aldridge and Becker, 2003). This has resulted in growing policy and practice recognition of ‘young carers’ as a social category, and such children in the UK now have specific legal rights both as ‘children’ and as ‘carers’ (Becker, 2007). Despite the significant attention focused on young carers in social policy and research, young people's roles in caring for family members affected by HIV are often invisible, due to the stigma surrounding HIV. This means that parents are reluctant to disclose their status to others and seek to ensure that their care needs are met within the family, increasing the reliance on children. The groups most affected by HIV in the UK are men who have sex with men of all ethnicities and ‘African-born’ heterosexual men and women from countries with a high prevalence of HIV (HPA, 2010). For African migrants in the UK, living with HIV is exacerbated by restrictive immigration and asylum policies, differential entitlements to healthcare and welfare support, racial discrimination, and wider processes of social exclusion that are detrimental to the well-being of migrant families (Doyal and Anderson, 2005).

In communities affected by the HIV epidemic in Eastern and Southern Africa, young people are increasingly relied on to provide care for chronically ill parents and relatives (Robson et al, 2006), including siblings, elderly grandparents and other community members who have experienced the loss of their usual carers (Evans, 2005; Skovdal, 2011).