‘Disability and the Good Human Life’ by Jerome E. Bickenbach, Franziska Felder, and Barbara Schmitz (Cambridge University Press, 2014).
What constitutes the good human life?
This is one of philosophy’s oldest questions, employed towards dialogues of moral obligation, civic virtue, distribution of happiness, as well as issues of social policy and human rights. Historically, the topic of disability has scarcely been touched by philosophers. Where discussed, having a severe disability was presented as justification for euthanasia and as evidence for applying bioethical grounds for selective abortion or limiting the moral status of disabled persons. Assumptions that all serious or severe impairment harms the good life contradicts with a growing body of evidence that persons with disabilities rate their well-being on positive terms, revealing that disability is a complex and interactive phenomenon that cannot be evaluated on the impairments alone. So how do we evaluate the balance between subjective well-being and objective harm as decrements to the good human life? The collection of twelve essays in Disability and the Good Human Life address this balance, presenting a variety of perspectives and philosophical methodologies to expand and strengthen the links between philosophy and disability scholarship. As the editors Jerome E. Bickenbach, Franziska Felder and Barbara Schmitz assert, the central question of the book is ‘whether, in any conception of the good human life, disability is an alternative way of living that can be as valuable as any other or whether disability is intrinsically associated with deficiency or defect in the value of life, one that must be tolerated or socially compensated and accommodated’ (p. 7).
The question of the moral status of individuals with severe intellectual disabilities (SIDs) has significant consequences for faming societal attitudes towards the cognitively disabled and for influencing policy decisions. Benjamin L. Curtis and Simo Vhemas’ essay explores how particular conditions are used to determine the moral status of a person with SIDs, concluding with the view that those who are argued as not persons are still more morally valuable as human beings than any nonhuman animal. Their view asserts the relationship between moral worth and intellectual capacity is determined by one’s personhood as well as an individual’s standing in human community relations. While there are capacities and needs that all human beings have and should have, disability is generally characterized as a lack of some of these features. To address this objection, Barbara Schmitz uses the Wittgensteinian notion of the “human form of life” to contend cognitive disability is ‘individual deviation from the human form of life’ and that the capacities or needs of disabled persons are differently formed (p. 58-60). These differences can teach us something new about the human form of life, and the multitude of variation within it, but it could also lead to exclusion and stigmatization for those who lack certain capacities.
Challenging normative ideas of what (dis)ability constitutes, disabled persons report high levels of good quality of life, happiness, and of living well, contradicting with the commonplace view of disability as an instance of harm, or a life not worth living. Thomas Schramme addresses this ‘disability paradox’ in relation to the philosophical concept of well-being. He claims whether disabilities can be considered harmful requires an internalized perspective that includes the view of the person with disability, the kind of medical framework, and the person’s life circumstances. Likewise, Tom Shakespeare argues that what he calls the ‘predicament’ of impairment of persons with disabilities can actually be a good form of life, notwithstanding that disability is generally viewed as a negatively valued condition. Looking into classifications of disability as outlined by World Health Organization sources and the Convention on the Rights of Persons with Disabilities, Shakespeare points out that preventing health conditions and impairments remain desirable, thus spearing a contradiction: if life with an impairment is good, why would anyone want to avoid a disabled life? How do we reconcile this contradictory evidence? Shakespeare shows that once we remove social barriers that prevents persons with disabilities from achieving happy and good lives, we can recognize the good life in the disabled life. Halvor Hanisch also contends that the good life for persons with disability ultimately depends on what he calls the ‘recognition of life with a disability’ by both the disabled individual and the surrounding community. Negative perceptions of disability are signs of misrecognition. Recognition of a good life with disability, Hanisch concludes, resides on two forms of recognition: of universal dignity and of difference. Disability, in other words, is recognised as a different kind of human life with goodness.
David Wassermann and Adrienne Asch’s essay examines the detrimental aspects of disability and whether disabilities are intrinsically disadvantageous or undesirable, and the implications of holding to such claims. The impact of disability on well-being is a complex and contingent issue, one that includes the addition of neutral characteristics (e.g. race and sex) that additionally impacts a disabled person’s life as well as the impairments themselves. Taking this issue into account, how do we disassociate disabilities form harm as constructed by biomedical advances, social policies, and other social and political enforcements? As Jerome E. Bickenbach explains, several bureaucratic programs to measure the success of governmental policy and the subjective well-being (SWB) of citizenry have been viewed with suspicion, or rejected by disability advocates, because these well-being agendas give credence to the disability paradox. While the advocates raise serious implications about measuring happiness in the individual as decreed by social policy, Bickenbach claims they actually legitimatize a strong version of paternalism by succumbing to what he calls “disability exceptionalism” and miss out identifying responsibility for the legitimate concerns the disability community should have about the well-being agenda.
Hans Reinders tells the story of Sam, who developed an unknown variety of dystrophy as a child. The disease eventually deteriorated Sam’s body to the point he required a permanent ventilator, which revealed the problem of failing to correlate between objective (the doctor’s assessment) and subjective (the family’s) qualities of life, and which view needs to be realized. Reinders argues this problem is unresolvable and roots a capability approach to quality of life within the Aristotelian goal of human flourishing, reflected by what people can do or become (p. 214). Adopting Martin Buber’s sense of ‘becoming aware’, Anna Stubblefield claims we first need to grasp the that a person exists in a body intellectually impaired, before finding means to communicate with them—verbally or non-verbally—and assert their experiences, quality of life, and well-being, before responding to the impairment. What we take as a low quality of life is actually our failure to grasp a different experience of the world. Havi Carel’s contribution also addresses happiness, offering a phenomenological approach to unpack the complex dimensions of the two dimensions of chronic illness (its global and fluctuating nature). Since experiences of illness are varied, the resilience of some people with chronic illness offers conclusions that claims of happiness and well-being can reveal insights into the subjective experiences of illness.
The last two essays explore the good life and right to inclusion. Christopher A. Riddle examines competing views of distributive justice to claim that ‘priority ought to be given to the conceptualization that is more stigma sensitive’ (p. 273). All things being equal, assessing conceptualizations of distributive justice should not stigmatize individuals on the basis of naturally acquired skills or endowments, but rather, priority should be given to acknowledge need and difference in order promote dignity. Franziska Felder focuses on highlighting the relationship between inclusion and a good human life, explaining that ‘[w]ithouth a clear definition and a coherent theoretical core, the concept of inclusion is of very limited practical, political, and empirical use’ (p. 300). She argues that the two spheres of inclusion—inclusion into communities and inclusion into a society with its diverse institutions—involve social intentionality from its participants and that the idea of a good human life requires inclusion through recognition, development, and freedom. A good human life thus consists of inclusion in society as well as in community, but inclusion need not be a necessary precondition for well-being; inclusion, is, however, a crucial part of the basic concept of human thriving and flourishing.
The ancient questions of what makes a life worth living and what makes a good life have been at the forefront of ethics and philosophy. Tying these questions to disability studies paves the way for new philosophical discourse and challenges for addressing how we can apply various ethical approaches to grapple the life circumstances of persons with disabilities without limiting their dignity or well-being. While some of the essays in the collection were difficult to read (at least for me), adding chapters into undergraduate courses on ethics will enable students to obtain a full range of ways we think about disability and the good human life, especially outside of a medicalised, bioethical framework. All of these essays offer an approach for creating a model for social resources, policy, legislation, etc., in addressing disability, by rooting the focus not on services or policies, but on what constitutes a good life—an important focus that is deeply tied together with human flourishing and dignity.
Reviewed by Jaipreet Virdi-Dhesi, who received her Ph.D. in History of Science and Technology from the Institute for the History and Philosophy of Science and Technology at University of Toronto. She is currently an Instructor at the G. Raymond Chang School for Continuing Studies at Ryerson University. Her current work examines the history of nineteenth and early twentieth century technologies for hearing loss.
Correspondence to Dr Jaipreet Virdi-Dhesi.