Why Bioethics Needs a Disability Moral Psychology

Notes on an article by Joseph Stramondo.

Stramondo, Joseph. “Why Bioethics Needs a Disability Moral Psychology.” Hastings Center Report 46, no. 3 (2016): 22-30.


In this essay, philosopher Joseph Stramondo argues that the long-stranding acrimonious conflict between the disability movement (DM)—“the coordinated, large-scale, sustained social and political action of disabled people in the United States” (p. 23)—and the field of bioethics is best explained by difference in moral psychology between disabled and nondisabled people. Disability scholars and advocates have long been critical of what they consider an eliminatory mindset in bioethics with regards to disability, particularly on the topics of prenatal diagnosis and selective abortion. However, the rift between the two groups seems to have grown wider with moral clashes on issues pertaining to health care rationing, grow-attenuation interventions, human enhancement, physician assisted suicide, and euthanasia. According to Stramondo, variations in moral psychology between disabled and nondisabled people are at the heart of the well-recognized conflict between the DM and mainstream bioethics. He contends that these variations in moral reasoning and perception are produced by the lived experience of disability. Stramondo argues that mainstream bioethics must adopt the “ambitious task of identifying and bridging this underlying divide in moral psychology” by first asking the question: “do disabled people sometimes perceive and reason about moral problems in ways that are foreign to mainstream bioethics?” (p. 24).

Disability Experiences as Sources of Ideology, Values, and Norms?

Stramondo looks to the work of the late Paul Longmore for an alternative ethics originating from the lived experience of disability. Longmore’s example is based on a reframing from basic social values in mainstream bioethics to values that originate from a disabled individual’s point of view. This point of view, he argues, is constituted from the collective social disability movement. While Longmore provides a good starting point, Stramondo ultimately argues that the conflict between the DM and mainstream bioethics cannot be framed in terms of variations in political ideology (e.g., social model vs. medical model) because “although the conflict between the disability movement and mainstream bioethics may often be expressed through the ideological divide that these scholars have identified, it does not originate with that divide and cannot be resolved at that level of analysis” (p. 24). The lived experience of disability that produce variations in moral psychology which embodies “how human beings perceive and reason about moral problems” (p. 22) exist prior to expressions to the political ideologies of the DM and mainstream bioethics. Therefore, resolution to moral conflict between the DM and bioethics must address the underlying divide in moral reasoning and perception between disabled and nondisabled people because ideology is primarily driven by the differences in lived experience of disabled people who come to develop differences in their moral psychology.

Variant Moral Psychologies

To expand on the contention between the DM and bioethics, Stramondo offers the example of physician assisted suicide (PAS) to illustrate how moral perception and reasoning differ between these two groups specifically with regard to the principle of autonomy. The different applications of the principle of autonomy taken up by disabled and nondisabled people leads to dramatically different perceptions of the moral issues in PAS debates.

 Most mainstream bioethicists perceive the main moral dilemma of PAS as a classic conflict between the principles of beneficence and autonomy, mostly viewing those seeking PAS as vulnerable patients needing to be empowered to express their autonomous choices in defiance of the illegitimate authority of paternalistic physicians (p. 24).

The principle of autonomy, or the right to self-determination is central to bioethics. In determining whether a person has the opportunity to act autonomously, the bioethicist only needs to ensure that the individual has “a substantial degree of understanding and freedom from constraint” 1 The paradigmatic case of this constraint is often interference from paternalistic physicians or institutions.

Disability scholars and advocates in the DM, on the other hand, see this championing of autonomy in bioethics as hypocritical and harmful whenever disability is involved.

The most important secular social justice argument offered by the disability movement against PAS is aimed at problematizing the sort of simple appeal to autonomy used by mainstream bioethics to support PAS. Many argue that appeals to the autonomy of the individual to choose PAS do not recognize the social context of oppression within which the supposed choice is made and that the conditions of this context compromise the authenticity of the individual’s choice by obscuring the coercive impact of systematic, institutionalized discrimination (p. 25).

What bioethics sees as autonomy, the DM sees as social coercion. People with disabilities are one of the most segregated, undereducated, and impoverished minority groups in the country. Disability oppression takes its toll on individuals with disability after they have repeatedly struggled with bias, barriers to access, structural discrimination in all areas of life. When this is compounded with the reality of societal prejudice and stigma, the result is often what Carol J. Gill refers to as “disability burn-out”—“the emotional despair engendered by thwarted opportunities and blocked goals.” 2 Yet ironically, when these disabled individuals decide that PAS is an option, they are often provided with public support for their choice.

Stramondo refers to Longmore who provides the example of the 1989 court-sanctioned PAS of David Rivlin. By all accounts, Rivlin was a highly ambitious person who sought access to a life in the community rather than a nursing home. His disability itself did not seem to be a source of unbearable suffering for him. However, after facing barriers to access of social supports that would allow him to live his life outside of an institution, he grew disappointed, depressed, and ultimately deemed his life meaningless. “Given the absence of real options,” Stramondo writes, “death by assisted suicide becomes not an act of personal autonomy, but an act of desperation” (p. 25). In cases like Rivlin’s, where complex a sociopolitical system determines quality of life for people with disabilities, the concept of autonomy put forth in mainstream bioethics “neglects or obscures some of the most important moral features of a situation in which a disabled person might attempt to ‘hold views, to make choices, and to take actions based on their own personal values and beliefs’ 3” (p. 26). It’s often the case where disabled individuals do not have true autonomy to make self-determined life choices because they do not have access to the resources and options they need. This issue of access is foregrounded in the lives and lived experience of those with disabilities and Stramondo argues that “this attunement toward access as a necessary condition to autonomous choice has been habituated through a socially structured experience of living with disability in a social and physical environment that is often largely inaccessible” (p. 27).

The Origins of Alternative Disability Moral Psychologies

Stramondo believes that much good can come from a collaborative rather than adversarial relationship between the DM and bioethics. He argues that the way to move forward is to confront the differences and conflicts that currently exist. Here, Stramondo addresses how differences in moral psychology are generated by the lived experience of disability. The variations in disability experiences give rise to differences in values. Disability moral psychology is not a monolith. Drawing on Owen Flanagan’s theories of moral psychology in the context of gender and his rejection of the two-voice hypothesis, Stramondo argues that there are not two distinct, mutually exclusive voices for disabled and nondisabled people: “It would be absurd to claim that every disabled person reasons about and perceives every moral problem in the same way, which is radically different from the reasoning and perceiving of any and all disabled people” (p. 28). Instead, differences can be found in the content or types of problems that disabled and nondisabled people encounter. Patterns of lived experience “leads to the development of different types of moral competencies from frequency of use” (p. 28):

The idea here is that social identities structure our lives such that different groups of people encounter different sorts of moral problems and thus develop different sorts of moral competencies (p. 28).

In other words, it is social identity such as being disabled that will determine how practiced and effectual one is in dealing with a particular problem. Yet, when disability scholars and activists introduce their moral competencies into questions and problems in mainstream bioethics, moral conflict often arises because of the social power and privilege that the field of bioethics maintains.

Charting a Path Forward

The serious, long-term uptake in mainstream bioethics of the moral perceptions and reasoning deployed by disabled people depends on adjusting concrete practices and institutions within which a nondisabled moral psychology develops (p. 29).

Stramondo offers a few starting points for enacting structural change. The first step is using empirical methodologies to “clarify the scope and depth of the variations in moral psychology between disabled and nondisabled people as they arise in biomedicine” (p. 29). This would help identify the where variations are found, their contexts, and their prevalence. Beyond this, mainstream bioethics must make room for disabled voices in the discipline. According to Stramondo, this requires removing more than just barriers to accessibility. He notes that entry into the field requires formal training and therefore a way to promote inclusion of disabled people would be through active establishment of affirmative action programs that recruit them to graduate programs. Lastly, he argues that the curriculum of bioethics must be infused with the history, culture, and theory of disability studies and “it should also include nuanced, politically aware narratives of life experience with disability—narratives that challenge the stereotypical tropes of popular culture and give aspiring bioethicists and health care professionals a richer understanding of disability from which to deliberate” (p. 29). Lived experience of disability creates variation in moral psychology of disabled people and therefore can be a resource for bioethics. Quoting Stramondo:

Developing a widespread, rich understanding of the phenomenal experience of disability from a social and political viewpoint, rather than a purely medicalized one, would go a long way toward establishing the conditions in which nondisabled bioethicists and health care providers could develop the moral perception and reasoning that would let them enter into constructive dialogue with the disability movement (p. 29).

 

Notes:

  1. Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103.
  2. Gill, Carol J. “Depression in the Context of Disability and the ‘Right to Die’.” Theoretical Medicine 25, no. 3 (2004): 180.
  3. Beauchamp, Tom L. and James F. Childress. Principles of Biomedical Ethics, sixth edition. New York: Oxford University Press, 2009: 103.