Before examining how the regulation of bioethical matters impacts the equal right to live in the world for people with impairments, Chapter 1 elaborates on key concepts relevant for the book’s later chapters: disability, eugenics, ableism, and neoliberalism. It begins with a critical discussion of the medical and social models of disability, the two dominant approaches to understanding disability in disability studies. The chapter also highlights the troubled recent history of eugenics, the concept of ableism and the persistence of ableist policies and practices, as well as the importance and shortcomings of disability rights laws in furthering disability justice and equality.

The arguments of this book are intended to tackle the social injustices faced by people living with dementia, yet reflecting on the author’s social position reveals a tension. As the author is not a member of the social group this book concerns, they are engaging in an act of speaking for others: a practice that has received significant criticism, given the risks of contributing to oppression and stigma through misrepresentation. With this concern in mind, this chapter engages in a reflective exercise about the content of the book, highlighting ways in which the author’s social position may have negatively influenced its content and setting out the steps the author has taken to try to address this.

In both philosophical research and public discourse around dementia, issues of power and social status receive insufficient attention. The Introduction sets out how this book is aimed at filling this gap.

In medical ethics, there is a well-established debate about the authority of advance directives over people living with dementia, a dispute often cast as a clash between two principles: respecting autonomy and beneficence toward patients. This chapter, in highlighting underexplored issues of power and social status, argues that there need be only one principle in substitute decision-making: determining authenticity. This principle favours a substituted judgment standard in all cases and instructs decision-makers to determine what the patient would authentically prefer to happen – based not merely on the patient’s decisions but also on their present settled dispositions. Adhering to this principle entails that, in a significant range of cases, an advance directive can (and indeed ought to) be overruled.

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.