Book review: The Disability Bioethics Reader

Introduction

Disability and medicalisation have a fraught past, in part, due to pervasive assumptions that disabled people ¹ are deficient, that their disabilities impair their quality of life or make their lives less meaningful. Under this view, frequently called the ‘medical model’ of disability, ² non-disabled body–minds ³ are centred, with disability marked as a form of deviance from the norm. While modern medicine has made life better for many people with disabilities by introducing medicine and prosthetics, the medicalisation of disability has reinforced eugenic assumptions about who is a ‘fit’ citizen and who is ‘unfit’ for public life. ⁴ Eugenic policies have had profound consequences for the disability community, justifying forcible sterilisation, institutionalisation, incarceration, and isolation from their communities. ⁵ As such, disability scholars and advocates have unsurprisingly questioned medicalisation in favour of more nuanced understandings of the interplay between body–minds and the built, institutional, and social environments in which they find themselves. ⁶

Despite the progress in disability scholarship towards understanding disability as socially and environmentally mediated and constructed, bioethics has been slow to disengage from the medical model of disability. The Disability Bioethics Reader provides a much-needed course correction for the field and contains context that should be provided via graduate and undergraduate bioethics courses, medical school curricula, and continuing medical education courses. Practitioners, educators, and scholars alike would benefit from the authors’ careful consideration of the intersections between bioethics and disability.

The authors define disability bioethics as

bioethical inquiry that involves, at minimum, the following three aspects:

1. A critical relationship to common narratives and ‘common sense’ claims concerning disability.

2. Theory and practice rooted in critical disability scholarship, with an emphasis placed on testimony by and work from disabled people as well as an emphasis placed on participatory models of research and practice.

3. Inquiry committed to increasing justice and equity for people with disabilities. ⁷

In other words, disability bioethics is informed by critical disability scholarship and a commitment to disability justice. The Disability Bioethics Reader brings together a diverse array of scholars, including many disabled scholars, to discuss the ways in which bioethics scholarship could be enriched by an engagement with disability studies.

The volume is organised, in some instances, by topic and, in others, by methodological orientation. Due to the breadth and scope of the volume, I will focus my comments on what I viewed to be core themes and strengths of the book, as opposed to discussing each chapter and section individually. I will conclude by discussing some brief reflections on the collection and some fruitful avenues for future research.

On the relationship between bioethics and disability justice

As a disability scholar, one of the most impressive features of the volume is its identification of clear areas where disability bioethics can intervene in mainstream bioethics. The groundwork for these discussions is laid in the first two sections, which contextualise the medicalisation of disability and eugenics, as well as describing how critical disability studies interact with traditional bioethics frameworks.

Part I: History, Medicine, and Disability includes essays by Michael Rembis, Robert A. Wilson, and Joel Michael Reynolds that discuss the fraught past (and present) of disability and medicalisation. For example, Rembis suggests that modern medicine has allowed disabled people to live ‘healthier lives than at any other time in human history’. ⁸ Yet ‘disabled people have had to suffer the consequences of living medicalized, pathologized lives shaped by stigma, objectification, devaluation, and in most cases, figurative or literal removal from society’. ⁹ Wilson’s piece ‘Eugenics, Disability, and Bioethics’ reminds readers of the limitations of the idea of a ‘eugenic past’. For example, investigative reporting recently uncovered forced sterilisations of Latina and Black women in the California prison system, ¹⁰ as well as the forcible sterilisation of girls and women with intellectual disabilities in Australia. ¹¹ The authors remind readers that any discussion of disability and medicine, including disability in bioethics, must take place against the backdrop of eugenics and the harms that medicalisation has inflicted on the disability community.

Part II: Bioethics: Past and Present then takes up the thorny question of how a disability bioethics that accounts for the factors discussed in the Introduction and Part I could be woven into mainstream bioethics. As a reader who is more familiar with the critical disability studies literature than with mainstream bioethics literature, I found this section to be particularly illuminating. Specifically, John H. Evans’ essay ‘A Critical History of Bioethics’ articulates some of the difficulties making disability justice-oriented arguments in mainstream bioethics due to different ‘jurisdictions’ in contemporary bioethics. He observes that bioethics policy is generally determined by principlism, ¹² or an appeal to commonly shared and articulated values that have been defined and codified by the bureaucratic state. Within this calculus, it is difficult to see where arguments about disability might fit, especially given that disability bioethics often critiques ‘shared’ values. Evans suggests that many disability concerns could be translated into the principle of ‘justice’ but might lose some of their substance and power. ¹³ For readers who are less familiar with the framing of bioethical debates, Evans’ piece provides a useful way to think about how disability scholars can make arguments in ways that are cognizable to mainstream bioethicists.

The tensions between mainstream bioethics and disability bioethics are further explored by Alison Reiheld, who discusses traditional ways of making arguments in bioethics, including: casuistry, or case-based reasoning, narrative bioethics, biomedical principlism, and systems analysis. ¹⁴ Reiheld suggests that using more systems-oriented reasoning in bioethics would be beneficial, as bioethics frequently reduces ethical issues to individual choices instead of considering broader structural injustices. She concludes that individual choice-based approaches lead to ethical errors that lead us to see only the person before us rather than the system that produces injustices and suggests a modified reflective equilibrium that takes into account both theory and practice. To conclude the section, an excerpt from a piece by Rosemarie Garland-Thomson sets out a ‘call to action’ by proposing that bioethicists and practitioners must develop ‘disability cultural competence’, that takes into account biomedical decision-making, accessibility, disability history, and social justice principles. ¹⁵

When read together, the first two parts are deeply insightful. They identify clear paths forward for disability scholars seeking to intervene in bioethics, as well as providing a preliminary understanding of disability history to practitioners, educators, and students. The first section should be required reading for medical students and bioethicists alike. The belief that eugenics ended with World War II is pervasive, and critically interrogating one’s own biases about disability and what constitutes a ‘good life’ is an essential practice for medical professionals. Understanding the disability community’s experiences with eugenics and the injustices perpetrated against them by the medical field is pivotal to developing disability cultural competence and rebuilding patient trust.

Contributions to specific debates in bioethics

The second important contribution of this volume is its reframing of key bioethical debates. At its core, The Disability Bioethics Reader questions a core assumption underlying mainstream bioethics’ view of disability: that disability is a harm that should be medically treated or ‘cured’ – that it is a ‘harm’. ¹⁶ By interrogating traditional conceptions of whose lives are worth living and who gets to decide, the volume destabilises traditional approaches to quality of life, reproductive technologies, end of life care, and even the goals of medicine themselves. Authors of many of the pieces prompt readers to rethink their assumptions about disabled lives and to focus on the lived experiences of illness and disability. For example, Havi Carel suggests that allowing disabled and ill people to interpret and express their own experiences of disability and illness via phenomenological methods can combat stereotypes about disabled lives. It can also give people resources to articulate their lives’ meaning outside of the ‘Scilla of social scripts (e.g., the monolithic view of illness as a private tragedy) and the Charybdis of medical discourse (reducing the lived experience of illness to a set of medical symptoms’. ¹⁷ Likewise, Emma Sheppard problematises the stigma associated with chronic pain, arguing that the assumption that lives with chronic pain are vastly inferior to lives without chronic pain contributes to stigma against people living with chronic pain. Stigma traps people in a cycle of wellness culture and medicalisation, where a person needs only see the right expert to be cured, which places the onus for ‘curing’ pain solely on chronically pained people. Yet, when they seek medical treatment, chronically pained people are subjected to a myriad of medical injustices. As such, many chronically pained people find that management and acceptance improve their quality of life substantially more than a single-minded focus on ‘cure’. ¹⁸ As contributor Lydia Nunez Landry suggests, many people ‘adapt’ to chronic illness in the same way that people adapt to parenthood – it simply becomes a background feature of their lives. ¹⁹ A disability bioethics prompts bioethicists to rethink whose lives are worth living and therefore questions mainstream assumptions about who should be born, who should be assisted with dying, what types of care should be provided, and what role doctors should play in determining a patient’s medical goals. To this end, the volume includes insightful contributions on reproductive technologies, end of life care, and reconceptualising ideas like quality-adjusted life years in light of disability bioethics.

Another intervention that merits emphasis is the volume’s discussion of research ethics, and more specifically, engaging with the disability community when conducting research. The introductory chapter to the book notes the absence of disabled people’s voices in bioethics research, ²⁰ and the topic is explored in more detail elsewhere in the volume, namely by Kevin Mintz and David Wasserman. Mintz and Wasserman explore the ethics of conducting research on and with people with intellectual and developmental disabilities. People with intellectual and developmental disabilities have historically been subjected to abusive research practices, such as when children with intellectual disabilities were purposely infected with hepatitis at Willowbrook State School in New York State as part of a scientific study. ²¹ Institutional Review Boards and government bodies are understandably hesitant to allow medical research to be conducted on historically vulnerable populations because of these historical abuses and issues relating to consent, autonomy, and legal capacity. ²² However, in practice, this has meant that disabled people are excluded from randomised controlled trials and other research that could be beneficial to the disability community. ²³ I wish the volume had engaged more with these questions, as ethical standards involving people with intellectual disabilities are often rooted in paternalism and a belief that people with intellectual disabilities lack the capacity to express and enact their preferences. This would be a fruitful direction for future research. The stakes of these questions are high – not including people with disabilities in clinical trials means that complications relating to their disabilities are understudied. However, we must be vigilant about not reproducing historical abuses in the process of including disabled people in biomedical and other forms of research.

Intersectional nuance within the disability community

One of the best qualities of this volume is its attention to nuance within the disability community. Indeed, as scholars like Sam Bagenstos have noted, the disability community is internally heterogenous – and frequently, it is unproductive to speak of, for example, a singular disability rights movement or disability community as a result. ²⁴ This volume takes such critiques seriously and considers the perspectives of people who may be alienated from traditional disability advocacy, as well as subgroups within the disability community. For example, Andrea J. Pitts notes that communities of colour often respond to pathologisation and debilitation differently and that Black women in particular may have reasons to distance themselves from the disability moniker. As her piece acknowledges, tropes like the ‘crazy Black woman’ are used to abuse and belittle Black women. ²⁵ She notes that Black cultural workers do not necessarily use the term disability; however, they question profit-driven medical institutions and do work to address debilitation brought about by state violence, like the lead poisoning crisis in Flint, Michigan. ²⁶ Race is frequently neglected in disability studies; therefore, thinking more broadly about how different communities relate to impairment, medicalisation, and debilitation is necessary.

The volume also offers nuanced perspectives on differences within the disability community. For example, Teresa Blankmeyer Burke prompts readers to think about the intersections between medicalisation and Deaf and Hard of Hearing communities. ²⁷ She argues that traditional concepts like harm and beneficence can be fraught when applied to culturally Deaf communities who do not view hearing loss as a harm. ²⁸ Likewise, the book acknowledges a diverse array of experiences within the disability community – especially when discussing intellectual disabilities and psychiatric disabilities. I was particularly impressed by the Mad studies scholars’ contributions, including Alexandre Baril’s work on the sanist assumptions made by suicide researchers. Baril argues that ‘suicidal people’s voices have been systematically erased from bioethical conversations on suicide’, serving as a potent reminder that scholars must consult and take seriously the perspectives of communities they research. ²⁹ In general, the volume’s intersectional orientation, which includes perspectives from feminist, critical race, queer, trans, Fat studies, and Mad studies scholars, is one of its greatest strengths.

Overall reflections

This volume was thought-provoking, engaging, and provides perspectives that will be useful for practitioners and scholars alike. My comments suggest avenues for future research rather than criticism. The volume covers a wealth of topics with impressive nuance, and I commend Joel Michael Reynolds and Christine Wieseler for their work in compiling it. However, two details deserve further comment. First, given the emphasis on participatory models of research and practice referenced in the volume’s definition of disability bioethics, I would have preferred to see more engagement with disabled people’s lived experiences through qualitative study. Alternatively, discussions about how to engage in research with the disability community might have strengthened some of the claims. I think some of the most powerful contributions were pieces like Erica Hua Fletcher’s, which teases out some of the contradictions between theory and experiences of disability and care in an auto-ethnographic way. ³⁰ Although her piece discusses disability from the perspective of a carer, an auto-ethnographic perspective on Mad studies and care teased out the real-world intersections between theory and praxis.

My second reflection is that I would have liked to see more engagement with the idea of eugenics as reproductive control. The volume focused heavily on reprogenics and eugenic ideologies about whose lives are worth living but did not explore as extensively eugenic practices like forcible abortions imposed on disabled people or forcible sterilisation, which are both still legal in many U.S. states. ³¹ We live in a world where Supreme Court Justice Brett Kavanaugh both voted to take away the right to abortion from pregnant people across the country ³² and supported forcible abortions for disabled women when he was an appellate judge. ³³ Eugenics is a broad, multifaceted ideology that intersects with medicalisation in a variety of ways. I wish the volume had engaged with more of these legacies of eugenics as well.

These concerns notwithstanding, The Disability Bioethics Reader provides a vital synthesis of critical disability studies and bioethics. In my view, it is appropriate reading for anyone who works in the medical system, as well as scholars who conduct research that involves the disability community. The volume is both accessible to people who are unfamiliar with bioethics and critical disability studies and insightful for people who are already well versed.