Methadone maintenance therapy arose as a treatment for opiate use in the mid 1960s. At the time, neither drug use nor treatment for it were considered disabilities. When Vincent Dole, the Rockefeller Institute metabolic researcher who was one of the progenitors of methadone maintenance therapy (MMT), asked, ‘What kind of disablement does a drug produce?’ (Courtwright et al., 1989, p. 334), this was a prescient question.1 Dole’s team stabilised patient-subjects on methadone, hoping to displace reliance on shorter-acting opiates, and explored dosages that would enable ‘cooperative relationships with patients’ (Courtwright, et al., 1989, p. 336). Opposing detoxification and abstinence as the sole basis for treatment, Dole saw opioid use disorder as a metabolic condition that required ongoing pharmacological stability. Contrasting the stabilising effects of one opiate (methadone) to another (heroin), Dole emphasised that drugs should be judged in terms of their social effects – did they improve or undermine capacity for stable relationships with family members, treatment providers or employers? Did they produce ‘disablement’ or did they instead ‘enable’ capacities for productive citizenship? Such questions dominated the social contexts into which methadone maintenance was inserted. Making stable, productive citizens was adopted as the goal of methadone maintenance.

A substantial portion of the global human population live with some level of hearing loss, and the World Health Organization estimates this disability may affect up to one in four people by 2050. For people who use speech to communicate, hearing impairment can cause serious disruption to daily life, yet we do not fully understand how speech rhythm perception is impacted by hearing loss. Moreover, in the case of people who use cochlear implants to listen, it is unclear how well aspects of speech rhythm are captured by hearing devices. This chapter surveys an interdisciplinary literature, bringing together insights from perception, speech therapy, and hearing and audiological sciences across the lifespan to construct an emergent picture of speech rhythm processing in the context of hearing disability.

I begin with the bodily good of health, which perfects our organic functioning beyond the rudimentary level required for life. I detail how such functioning operates at different bodily levels, e.g., within cells, tissues, vessels, glands etc. I then move on to bodily abilities, which (not being autonomic functions) reflect the exercise of agency or voluntary control. Such abilities can be divided into active and passive powers, these affording a wider relation to the world in virtue of their intentionality. The third topic is bodily beauty. I argue that this is not a bodily perfection, since it is beholden less to our bodily powers or their configuration than to judgements of character and the social context in which our bodies operate. Finally, I explore body alteration. This constitutes a spectrum, from (perfective) medical intervention to (imperfective) mutilation, with what I call mere body ‘modification’ in the middle. I conclude with two cases that are difficult to place on this spectrum: namely male circumcision and cosmetic ‘surgery’. I argue that the former is likely a bodily imperfection or bad and the latter likely bound up with further imperfections.

This chapter brings together youth and disability as two major areas of work for the League of Red Cross Societies and its member Red Cross and Red Crescent National Societies. It focuses on the Junior Red Cross and Red Cross Youth, and how the Red Cross movement engaged with young humanitarians and disability. The chapter outlines the evolution of the Junior Red Cross and the role played by the League, and how the movement entered the field of children with disabilities. This built on earlier work of National Societies working with wounded, sick, and disabled ex-soldiers during war and afterwards. The chapter concludes with a case study of Haraldvangen, a summer camp run by the Norwegian Red Cross, to explore efforts by Red Cross Youth to bring disabled and abled children together in the 1970s.

Hip-hop’s relationship to disability has been as long and complex as the culture itself. This chapter discusses the multiple ways that disabled artists and audience members have engaged, remixed, and transformed hip-hop through their work, activism, and building of communities. It considers prominent disabled hip-hop artists (like Bushwick Bill of the Geto Boys), the presence of disability-specific aesthetics and imagery in subgenres like hyphy or “mumble rap,” and tenacious questions of ableism within the music (and the music industry), and it explores the work of disabled people outside the commercial music industry to expand and redefine the culture. Most specifically, it traces the development of Krip-Hop Nation, which emerged from linked movements for racial and disability justice to gain an international presence for disabled rap artists and fans.

This chapter characterises the beginning of the 1810s as a transitional moment for both early feminist thought and cultural conceptions of intellectual disability. Through a sustained reading of Lucy Aikin’s critically underexamined Epistles on Women (1810), the chapter argues that the long, combative poem articulates an intersectional appeal to feminine-coded weakness, idiocy, and disability. The opening question of the poem, ‘when was ever weakness in the right?’, pits a utopian matriarchal future against the overwhelming misogyny and brutality of the masculinist past. Aikin’s revisionist history begins in Eden with Eve’s assiduous care for the ‘moping idiot’ Adam and ends in the modern era with the new ideal of feminine friendship supplanting compulsory ideologies of heteropatriarchal marriage. Throughout, Aikin creatively develops a compelling feminist aesthetics and ethics grounded in the complex trope of idiocy and neurodiversity.

Because of advances in technology and the provision of critical care, an increasing number of patients are surviving critical illness; this growing population of survivors of critical illness is characterized by heightened vulnerability to a host of adverse health outcomes and by the development of multidimensional impairments that significantly impact their quality of life and societal participation. Post-intensive care syndrome (PICS) is defined as new or worsening impairments in physical, cognitive, or mental health status arising after a critical illness and persisting beyond acute care hospitalization. PICS-Family describes the psychological and social impairments that family members, loved ones, and caregivers can develop as a consequence of their loved one’s critical illness. Survivors of critical illness are a heterogeneous patient population, and considerable variation exists with respect to the breadth, depth, duration, and mutability of their symptoms and impairments. This chapter explores the clinical manifestations of PICS, its incidence and prevalence, the co-occurrence of impairments in multiple domains, duration and severity of impairments, risk factors for its development, prediction tools, prevention strategies, screening and diagnosis, and treatment options. Additional topics include the biophysical model of disability, functional trajectories following critical illness, and the lack of communication about post-ICU problems.

The introductory chapter outlines the book’s central premise: disabled people have as much right to live in the world as the non-disabled. It introduces the human rights and critical disability studies methods used to interrogate the problem of disability discrimination throughout the life cycle, especially at the beginning and end of life. Along with providing an overview, the introductory chapter argues that the book is particularly needed because disability equal rights struggles remain marginal in mainstream bioethics and law.

Chapter 6 examines the regulation of access to controlled and prohibited substances for symptomatic relief and palliative care. It argues that restrictive drug control policies, especially uniform drug prohibition, are incompatible with disability rights because they are discriminatory against disabled people in pain. The chapter concludes that permitting a wider range of controlled substances to be accessed by people with impairments, especially those eligible for assisted dying, strengthens their right to live in the world by giving them greater options to live with their conditions.

The refusal and withdrawal of life-sustaining treatment and care by, and on behalf of, people with impairments are the focus of Chapter 4. The chapter argues that greater attention must be given to the socio-economic contexts in which these non-treatment decisions are made. It also argues that the selective non-treatment of disabled infants and the non-consensual withholding and withdrawal of life-sustaining care from people with disorders of consciousness are incompatible with disability rights. The chapter concludes that disabled people, and their health care proxies, should not simply have rights to refuse or withdraw life-sustaining interventions, they must also have rights to request life support.