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Despite increasing global respect for disability rights since the 2008 entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD), the equal right to live in the world for disabled people continues to be undermined. This undermining stems from a range of factors, not least the selective prevention and termination of disabled lives, along with long-standing barriers to life-sustaining care, including restricted access to controlled substances and experimental treatment. Investigating the problem of disability discrimination at the margins of life and death, Tony Bogdanoski draws on a range of materials, including international human rights law, reports of UN treaty monitoring bodies and special rapporteurs, and laws largely from the US, UK, and Canada to explore how selective reproduction, assisted dying, and drug control impact struggles for disability equality. His insights are broad in consequence, spanning the fields of disability studies, human rights, law, and bioethics.
Chapter 1 sets the scene for the book. It provides a chapter breakdown and sets out the key claims which the book makes. It also addresses the problematic issue of terminology.
Chapter 11 summarises the arguments in the book. It concludes that, although the evidence is incomplete, there is little reason to believe that the severe disfigurement provision is inducing positive attitudinal or behavioural change, nor providing an effective remedy for people discriminated against because of the way they look. It concludes by noting that other social changes may bring this issue into sharper focus, and suggests some ways in which holes in the evidence could be filled.
Chapter 10 questions whether law should widen its lens to address general appearance discrimination too. Would a protected characteristic of appearance offer viable legal rights to the many millions of us who do not have a disfigurement but are less-than-beautiful in some way? For example, is appearance objective enough to be adjudicated in law? Is a clear distinction between mutable and immutable aspects of appearance important – or even possible given increasing medico-cosmetic opportunities to change the way our bodies look? Do we have an unobjectionable nomenclature to describe appearance and attractiveness in legal terms? And could we swallow well-meaning employers’ attempts to measure the attractiveness of their staff for the purposes of diversity monitoring? The discussion draws on examples of comparative laws in France and America. Both countries have adopted wider conceptions of appearance equality, and America’s laws have seen a recent period of growth, with Binghampton, New York, the latest to vote such a law onto its statute books in 2023. However, both sets of laws remain little used so far, despite evidence showing that appearance discrimination remains prevalent. How could we ensure that a protected characteristic of appearance in the UK avoided a similar fate?
Chapter 9 draws on the evidence outlined earlier in the book to evaluate a range of possible legal interventions. Structured according to the five potential equality objectives outlined earlier, the measures include steps to increase the visibility of people with disfigurements in daily life, methods of motivating employers to become appearance-inclusive and changes to influential institutions outside the employment context. They also include a range of legislative reforms to replace the severe disfigurement provision with a better remedial mechanism, such as the creation of a new protected characteristic of disfigurement or the reformulation of the definition of disability.
Chapter 5 addresses the application of the law on disfigurement from the point of view of employers. It analyses the findings from interviews with HR and EDI professionals about their approaches to disfigurement equality at work. It explores employer approaches to visible difference in a variety of contexts – from recruitment to workplace culture to making reasonable adjustments. This chapter reveals considerable uncertainty among employers about how to address the social barriers of looking different. This uncertainty is addressed by guidance in Appendix 1. Moreover, drawing on literature about the legal consciousness of human resources departments, it also uncovers tensions in the daily reality of HR practice which may impact both their ability and motivation to create appearance-inclusive workplaces.
Chapter 8 draws on sociological literature in debating whether law – however drafted – is capable of solving the complex problem of discrimination against people who look different. It argues that, although we should not expect too much of law in tackling the complex social problem of appearance bias, strategically targeted laws can sometimes play a part in changing attitudes, norms and behaviours. While prohibitions on discrimination are important for remedial purposes, other types of legal and social reform may be better placed to create the conditions for greater inclusion of people with visible differences.
Chapter 7 considers the severity threshold in the Act. Examining how the law establishes severity, it asks whether the threshold can be justified – particularly given that the Act’s standard definition of disability (which is based on functional deficit) applies a lower threshold of substantiality. It argues that the severity threshold is out of step with the lived experience of visible difference and explores whether the concept of perceptive discrimination can be used to bypass this problematic threshold. This chapter also addresses the problem of complex conditions – those which include both an aspect of disfigurement and of function – and concludes that, mirroring academic debate about the rigidity of models of disability, the law’s approach is not flexible enough to encompass all types of disabling barrier holistically.
Chapter 6 uses doctrinal analysis to ask what the word ‘disfigurement’ means, and whether we can justify treating disfigurement differently from the related concepts of appearance and obesity. It identifies significant gaps created by a law which only protects a small subset of people experiencing appearance disadvantage – those with severe disfigurements – and which excludes many of those disabled by social barriers because of other aesthetic differences, such as those experiencing hair loss, those whose bodies are differently sized or those with facial movement impairments (such as facial palsy or synkinesis). It doubts whether these inconsistencies and mixed messages can be justified. It also considers whether other protected characteristics – such as sex or age – can be drafted in to fill the gaps in legal protection, but concludes that this may amplify the inconsistencies within the law.
Chapter 2 explores an important premise which underlies this critique of the law: it examines the idea that disfigurement inequality is a problem which merits a legal response – namely the granting of protective rights under the Act. It concludes that, despite some uncomfortable distinctions, there is a compelling case for a legal response in this area. The nature of law’s current response is then laid out. Relevant parts of the international legal framework – including EU law, the UN Convention on the Rights of Persons with Disabilities (‘CRPD’) and decisions of the European Court of Human Rights (‘ECtHR’) applying the European Convention on Human Rights – are explained by reference to the models of disability which implicitly inform them.