Analysis of testimony at Medical Aid in Dying legislative hearings can challenge the ableist normalisation of authorised disposability of certain members of the population, says rhetorician Christa Teston.
At the time that I write this, 10 U.S. states and the District of Columbia permit some form of “Medical Aid in Dying” (MAiD). Some readers might be more familiar with legacy terms for what’s now called MAiD, such as “assisted suicide”, “euthanasia”, or even “death-with-dignity”. The legislative titles in Figure 1 suggest that MAiD proponents have over the last decade rebranded so-called “death with dignity” in ways that, at least discursively, distance themselves from the stigma of suicide or euthanasia.
As a medical humanist who relies on rhetorical theory to study scientific and medical contexts, I typically begin my research by examining the words we use to describe things, since words tend to shape how we come to understand and deliberate about those very things. The legislative titles for MAiD listed in Figure 1 contribute to what we call “officialized discourse” about MAiD. Rhetoricians of health and medicine, such as myself, are keen to examine more than just officialized discourse, though. Rhetoricians also wonder about the discourse that everyday people use when they talk about options for death and dying. Distinct from “officialized” discourse, we characterize the terms everyday persons employ as “vernacular” (Hauser 2007).
For the last three years, I’ve studied the vernacular discourse around MAiD legislation by observing and analyzing testimony at MAiD legislative hearings in two U.S. states—Connecticut and Nevada. Over time, I’ve come to witness how ordinary people reason about MAiD in ways that, perhaps unwittingly, frame some persons as more biopolitically disposable than others.
Certainly, no one outright declares that certain persons’ lives are more disposable or less livable than others. It happens implicitly in the words people use and in the stories they tell in their testimony. But over time, the discourse that repeatedly circulates about MAiD can normalize certain forms of suffering for certain kinds of people. My analyses suggest that much of the vernacular discourse about MAiD in the U.S. reflects what Iris Marion Young describes as “unconscious assumptions and reactions of well-meaning people in ordinary interactions” (Young 1997, 41). When combined with “media and cultural stereotypes” as well as “bureaucratic hierarchies and market mechanisms”, or what Young calls “the normal processes of everyday life” (Young 1997, 21), it’s easy to see how unconscious ableist assumptions scale up over time to normalize the devaluation if not outright disposability of certain lives.
One way to interrupt this normalization is to call attention to it. To name it. To shed a bright light on the words that make certain kinds of suffering acceptable. That’s my goal here.
MAiD Testimony in Connecticut and Nevada (2017, 2019, 2021)
In this section, I briefly summarize the contours of the testimony I witnessed during MAiD legislative hearings in Connecticut and Nevada. As I write this, MAiD is not yet legal in either of those states, but it continues to be deliberated about in legislative sessions. In addition to reviewing digital recordings of hearings, I also examined meeting minutes, written testimony, and proposed amendments. The Connecticut corpus includes written and verbal testimony from two legislative hearings about MAiD in 2021 and 2022. The Nevada corpus includes written testimony from three different legislative hearings about MAiD in 2017, 2019, and 2021. Each bit of testimony was coded for the person’s stance on MAiD and how they warranted their MAiD stance.
The first thing to note from my analyses is that attempts by MAiD supporters to rebrand the practice so that it’s no longer stigmatized as an act of suicide have not exactly been successful. Employing corpus linguistics analytic software (LancsBox) revealed that individuals who testified against MAiD still relied on “suicide” as their overarching discursive frame. Compared with those who testified for MAiD, those who testified against were more likely to employ affectively charged words, such as “lethal” and “kill”. Those who testified in support of MAiD, however, tended to employ more benign terms such as “aid-in-dying”, “option”, and “end-of-life.”
When I used qualitative data analysis software (NVivo) to inductively code MAiD testimony, I was then able to unveil what rhetorical theorists call “topoi” (singular: “topos”). It might help to think of topoi as logical premises that underpin an argument. Because topoi are supposed to be things about which we can all agree, topoi can reveal unmined assumptions and values that repeatedly circulate over and over again—assumptions that, over time, take on a kind of dormant or unquestioned truthiness.
For the purposes of my analysis, a word, phrase, or idea was characterized as a topos when it appeared in at least 50 forms of MAiD testimony. Ultimately, my analysis of MAiD testimony identified seven core topoi that MAiD deliberators from both sides relied on when attempting to persuade others of their stance on MAiD. I describe in great length each of these seven topoi in chapter three of my forthcoming book, Doing Dignity: Ethical Praxis and the Politics of Care (Teston 2024), but in the rest of this brief essay I want to focus on two topoi in particular: Cost and Vulnerability. Unlike the other five topoi, Cost and Vulnerability were disproportionately used as argumentative premises by those who opposed MAiD.
The Topos of Cost in MAiD Testimony
When an individual explained their stance on MAiD by expressing concern about limited material or financial resources, I coded their testimony as employing the “Cost” topos. References to cost appeared in 113 opponents’ testimonies but in only 38 MAiD supporters’ testimonies. Here are three examples of the Cost topos in action:
- “Will the desire to spare relatives or to preserve family resources create a sense of obligation—perhaps even a duty—to die sooner rather than later?”
- “At the beginning of this pandemic, discussions were had in ethical circles of how to treat people with scarce resources and who gets those scarce resources. If this bill passes, do requests for aid-in-dying and subsequent possession of lethal medication become factors in determining whether or not the ‘qualified patient’ receives medical resources—scarce or not? Could such a ‘qualified patient’ be denied medical resources?”
- “I certainly don’t want to burden my family with unnecessary and horrendous medical bills should I become either physically or mentally incapacitated, let alone burden them with the mental and physical trauma of having to deal with the issue. I would like to know that I had the legal choice to choose death over the indignities of an extended life that medical technology has now made available.”
Adjacent to concerns about Cost were references to individuals’ fears of becoming “physically or mentally incapacitated”, as the final example above demonstrates. One’s incapacitation—for reasons related to age or disability—animated the other topos I want to briefly unpack, Vulnerability.
The Topos of Vulnerability in MAiD Testimony
MAiD testimony was coded for Vulnerability when an individual warranted their stance on MAiD by explicitly invoking a vulnerable encounter experienced either by themselves or by another person. References to vulnerability appeared in 100 MAiD opponents’ written testimonies and only 46 MAiD supporters’ written testimonies. For example, one MAiD opponent asked law makers to “to put yourselves in the shoes of ordinary people of color, disabled people and the elderly who struggle to be seen as full persons in the health care system.” Another opponent appealed to the vulnerability status of “our elderly”, who “will be pressured with a duty to die or open obvious pathways for abuse.”
In addition to elder abuse, there was a sensitivity to economic class among MAiD opponents who mobilized vulnerability arguments: “Assisted suicide endangers all terminal patients. It puts a disproportionate pressure on people with disabilities and the economically disadvantaged, leaving a great many with suicide being the only ‘treatment’ to which they have equal access.” MAiD opponents were also inspired to draw on COVID-19 conditions as backing for their vulnerability-based arguments. This is what’s meant by the words “the last year” in the following testimony:
The last year has given us terrible insight into the ageist and ableist country we are—one which treats the old and disabled like throwaway populations, discarded into warehouses of death. We’ve also seen how terribly we treat those with dementia in particular, and the thousands and thousands of ‘excess deaths’ of this population during the pandemic is too awful to contemplate.MAiD testimony
Vulnerability-based arguments in MAiD testimony highlight how MAiD legislation risks normalizing what Zakiyyah Iman Jackson might call the “authorized disposability” of elderly and/or disabled “others” (Jackson 2019, 19).
Confronting “Authorized Disposability” in Vernacular Discourse about MAiD
Contrary to what some pro-MAiD testimony suggested, concerns about cost and vulnerability from people that some dismissed as being a “vocal minority” are not manufactured hysteria. More than 25 per cent of people with disabilities in the United States live below the poverty line. Even if disabled persons were, in fact, a vocal minority, the implicit assumption that it would be impractical to try and shape policy in response to their concerns epitomizes how suffering for certain persons can become normalized in vernacular discourse.
Those who testified against MAiD were quite skilled at confronting the vernacular discourses that authorized their own disposability: “We disabled people have lives that frequently look like the lives of people requesting assisted suicide, but we reject the prejudice that personal dignity is somehow lost through physical dependence on others, or because we are not continent every hour of every day.” Another MAiD opponent who identified as disabled rebutted MAiD proponents’ argument that “life in a wheelchair” conferred a “loss of autonomy” and “being a burden” on others. Instead, she called out MAiD supporters’ promotion of what she called “systemic ableism”, which “gives the message that depending on the care of others, as often happens in the aging process or by having a disability, is a fate worse than others.” Analyzing MAiD testimony about Cost and Vulnerability reveals how every day, vernacular discourse about MAiD legislation, at least in these two U.S. states, relies on pathologized dependency.
To interrupt the normalization of authorized disposability of certain persons, we need to develop “cultural competence” around disability (Garland-Thompson 2017, 325), learn how to de-medicalize disability ( 327), and be on guard against the pathologization of dependency, or what Robert McRuer terms “compulsory able-bodiedness” (McRuer 2010). I want to conclude with the words of one disabled activist, author, and lawyer, Harriet McBryde Johnson who, before her death in 2008, argued that “choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life.”
About the author
At Ohio State University, Christa Teston, Ph.D. is the Andrea Lunsford Designated Associate Professor in Rhetoric, Composition, and Literacy in the Department of English. Her first book, Bodies in Flux: Scientific Methods for Negotiating Medical Uncertainty, was published by University of Chicago Press in 2017 and won two national best book awards. Her second book, Doing Dignity: Ethical Praxis and the Politics of Care, is forthcoming from Johns Hopkins University Press and draws on analyses of three case studies about how in/dignities emerge in contemporary caretaking contexts.
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Hauser, G. A. 2007. “Vernacular Discourse and the Epistemic Dimension of Public Opinion.” Communication Theory, 17(4), 333–339.
Jackson, Z. I. 2016. “Sense of Things.” Catalyst: Feminism, Theory, Technoscience, 2(2), 1–48.
Johnson, H. M. 2020. “Unspeakable Conversations”. In Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong, 3–27. New York: Vintage.
McRuer, R. 2010. “Compulsory Able-Bodiedness and Queer/Disabled Existence.” In The Disability Studies Reader edited by L. J. Davis, 2nd Edition, 383–392. Oxfordshire: Routledge.
Teston, C. 2024. Doing Dignity: Ethical Praxis and the Politics of Care. Baltimore: Johns Hopkins University Press.
Young, I. M. 1997. Intersecting Voices: Dilemmas of Gender, Political Philosophy, and Policy. Princeton University Press.