Distraction Free Reading

Bioethics Must First Burn

a red muppet with raised arms surrounded by flames

Bioethics must burn before it can be reimagined to enable the flourishing of all humans, and not just the ones that align with or are presupposed by its ideological orientations. By “burning” bioethics, I mean the intentional disruption or damage of citation processes, including who and what is cited within the field– what Sara Ahmed calls the “bricks” (2017, 16) that form the philosophical edifice of the field of bioethics. While the idea of “burning” bioethics may seem to be hyperbolic, the metaphor is apt given the tendency of the field to label any attempt at advocacy on behalf of marginalized persons, including disabled persons, as advocacy and “not bioethics” (for it challenges the idea of what bioethics should be or do).

Among the clearest examples of such a response is Peter Singer, who describes criticism of his work as “a concerted attack, not just on a particular ethical position, but on the very possibility of pursuing applied ethics as a free and critical inquiry” (Singer 1992, 85). Put differently, for Singer, the calls for further engagement with disability scholarship by activists and disabled scholars serve as a kind of existential threat to the field. Singer himself makes this clear when he states, “For the entire field to take up an advocacy stance would imply that bioethicists who do not share the party line should be excluded or dismissed from the field” (Singer, 2001, 55). This quote illustrates Singer’s view that the bioethicist who engages in advocacy, who asks that the field itself consider the merits of arguments that fall under Singer’s wide umbrella of “advocacy,” polarizes the field and prevents genuine discourse from occurring.

Singer is not alone in his critique of advocacy. In a co-authored paper titled “Can Eugenics be Defended,” Singer and his colleagues argue that there exists a “legitimate worry that the requirement for ‘sufficient engagement’ will only be met when proponents of genetic enhancement come to abandon their views and adopt the positions of their opponents” (Veit et. al 2021). For Singer and other influential bioethicists like Jonathan Anomaly, Nicholas Agar, Walter Veit, and Francesca Minerva, the only path to addressing the concerns raised by disability activists lies between two poles: rejecting their work as antithetical to the project of free inquiry that bioethics should be committed to, or complete capitulation to the advocacy stance presumably demanded by disability activists. This position is further complicated by Singer’s own position that “Bioethics, as a field or discipline, should not dedicate itself to advocacy for anyone. Its only commitment, as a field, is to pursue knowledge and understanding with integrity and respect for the views of other scholars in the field.” (Singer, 2001, 55).

For Singer and, presumably, others who share his position regarding bioethics, the work of disability activists and advocates is not bioethics: rather, it is a form of partisanship, of propaganda, due to what Singer and his colleagues view as the unwillingness of disability activists and scholars to consider their arguments seriously, even arguments in favor of eugenics (Veit et.al, 2021). That is, for Singer and his colleagues, the distinction between the scholar and the activist lies in the willingness to consider all arguments and to even be moved by those arguments given good reason. This, for Singer, is what disability activists and those scholars who become advocates for disabled persons lack: the willingness to be motivated by reason rather than mere sentimental alignment with a specific population group.

To this end, for Singer and those who share his perspective on bioethics, the edifice of the field is to be built upon citational bricks of “impartial” work that does not engage in advocacy on behalf of any group, bricks that form a “wall” that excludes disabled persons and the scholars that advocate on their behalf from participating in the field. To be clear, this rejection of scholarship on disability and the assumption that disability scholarship is mere activism is what I take to be the dominant position within bioethics where scholarship that engages with the experiences of marginalized persons, specifically disabled persons, is concerned.

In response, scholars like Joe Stramondo have argued for the value of disability activism, which we might extend to include scholarship that advocates on behalf of disabled persons and other marginalized populations. For Stramondo, direct action like protests, occupations of buildings, and disruptions of the ongoing processes of life can open up a space to enable the uptake of arguments by scholars on behalf of the disability community. Stramondo (2020), in his piece “How Disability Activism Advanced Disability Bioethics,” argues that the persistence of “master narratives” like the “master narrative of the pitiful disabled person” and the “master narrative of the pitiful disabled person better off dead” (MNPDP) operate as the background conditions that determine the uptake of arguments from within disability bioethics.

In short, because these master narratives form the ground from which contemporary bioethics emerges and to which it returns, for Stramondo “objections raised to the ableist premises underwriting much of mainstream bioethics comes across as nonsensical,” which enables bioethics to continue to push back against or ignore arguments that begin from the premise that disabled lives and disability itself are a valuable human variation. On this basis, Stramondo argues that disability activism, in the form of direct action, can generate a counterstory that makes clear the inconsistency between the demands of the master narratives, which organize the understandings of disabled people through bioethics and the actual lives of disabled persons made visible through direct action.

To this end, “direct action then forces a confrontation between one’s prejudicial stereotypes as they have been structured by the MNPDP and the realities of disabled embodiment” (Stramondo 2021, 343) through the ways that direct action makes visible the lived experiences of disabled persons by disrupting the ongoing processes of daily life. As an example, using non-violent protests like blocking intersections and buildings with their bodies, examples which have a historical basis in events like the 504 Sit-In and the year-long series of protests of the Denver Transit Authority in 1978, which led to the city of Denver equipping its buses with wheelchair lifts, serve to highlight the dichotomy between the representation of disabled experience and the reality through how they disrupt the ideology of pity. It might not be the case that the person inconvenienced understands the policy or social conditions that have given rise to the anger manifest in disabled direct action, but they may recognize the gap between the master narratives, specifically master narratives of pity, and the experiences of disabled persons.

Thus, for Stramondo, this gap is made possible by the fact that the disabled activists “are agitating for action in a way that would not be conceivable if such action was driven by an ideology of pity. The emotion they are trying to evoke is perhaps anxiety or anger, not pity” (Stramondo, 2021, 343) . That is because disabled activists are acting in ways that make clear they are not simply persons to be pitied but are individuals with meaningful lives, it becomes possible to recognize the validity of their arguments for equal rights, including those arguments presented in the mode of scholarship. While I recognize Stramondo’s argument, I believe more direct action within the field of bioethics is necessary. Specifically, I believe it is the case that scholars of disability should use their positions as scholars to disrupt the citational politics of the field of bioethics.

To develop this account of what more direct action looks like, I will first reconceptualize the problem of the uptake of disability bioethics and disability scholarship in bioethics as not simply a problem of the master narratives but the treatment of disability bioethics and advocacy scholarship as activism and therefore “not real scholarship,” a position which parallels the marginalization of Black Bioethics and bioethics that takes race seriously as described by Keisha Ray. Drawing on Sara Ahmed, I will position this rejection of Black Bioethics and Disability Bioethics as “not bioethics” in line with Ahmed’s observation that “not” implies a lack and this lack denies the relevance of this work for the field, thereby retaining the organization of the field around ableism and whiteness. In short: who is and is not cited, for what reasons, and by whom serves to enable the field to take the shape of those who are cited.

To be clear, I am focusing on the citational politics within the field of bioethics for two reasons: first, much of the work on disability activism, as indicated by Stramondo (2021), focuses on work external to the field as shifting the internal dynamics of the field. Given the resistance to disability activism as “legitimate scholarship” or a source of valuable knowledge which can inform the practice of bioethics, this focus is appropriate. However, this has led to a relative lack of scholarship that focuses on the need to act within the field to disrupt its practices. Second, as indicated by the brief sketch above, one of the predominant positions in the field of bioethics, at least one which is held by influential scholars of bioethics, is that scholarly work that advocates on behalf of disabled and marginalized persons is not bioethics due to how it risks “shutting down” objective discourse. This second claim, in my view, serves to structure how the field takes its shape, a point that Ahmed makes clear.

To demonstrate the necessity to interrupt the citational politics of bioethics, I will draw upon Paulo Freire’s Pedagogy of the Oppressed to indicate how merely direct, non-violent action is not enough to transform the field: scholars of disability, disability activists, and disabled bioethicists must rebel against the field in order to halt the ongoing citational practices of bioethics. Following this, I will argue that one way to engage in this rebellion is through interrupting the citational politics of bioethics, as described by Sara Ahmed. Ahmed’s inclusion here is valuable for her account of citational politics as resistance, which I argue is one way to force bioethics to transform in ways that enable it to account for the experiences of all members of society. To conclude, I suggest that disabled activists, disabled bioethicists, and disabled scholars must rebel against the field, must burn the field for it to serve all individuals.

The Citational Politics of Bioethics

Kiesha Ray, in her blog post “We Are Not Here to Save Bioethics: Amplifying Diverse Voices in Bioethics Today,” states the following regarding her experience as a woman of color and a bioethicist whose work focuses on the intersection of bioethics and race:

One roadblock that I have encountered that I know is common is the “what you do is not bioethics” roadblock. I have encountered this roadblock many times in the bioethics job market. I’ve had to defend my work beyond the normal academic criticism and defend the necessity of my work, that it belongs in bioethics, and that it is not better suited in public health or sociology, or another discipline. I have had to prove that I have something worthwhile to say that is beneficial to the profession. (2022, n.p.)

What is interesting here is the framing of bioethics research that is focused on race as not belonging in an “objective” field like Bioethics. Using Ray’s examples above, we could adopt the position that work focuses on the ways that race and bioethics intersect, and offers recommendations that proceed from this intersection, belongs in public health where such recommendations can be actualized as policy. In contrast, work at the intersection of bioethics and race belongs in sociology because the work isn’t truly bioethical: it is an engagement with health issues proceeding from the intersection of race and society. What is crucial in both articulations is the argument that the element of advocacy, the focus on a specific set of ethical concerns that affect a demographic group, is not true scholarship: it is partisanship or advocacy. Bioethics’ position, therefore, aligns with Charles Mills’ racial contract insofar as the racial contract is also an epistemological contract that structures not only how race and racialized persons are understood but also structures how knowledge about race and racialized subjects is produced. Thus, only knowledge that emerges from a white imagination, from the knowledge practices of whiteness, is valid.

However, it is not simply that Black Bioethics is applied to race that denies it the status of “real bioethics:” research in bioethics is applied within medical fields to direct the conduct of medical professionals in a variety of ways. It is the fact that Black Bioethics takes seriously the fact that race affects health outcomes and the ethical considerations therein of Black people that denies it the status of bioethics. To be clear, such application, which demonstrates the inequalities in bio-medical engagements with racialized subjects, deviates from the assumption of universality that proceeds from the positionality of whiteness, as observed by scholars like Lewis Gordon (1999, 34). Thus, as Ray notes, “all topics in bioethics study the ethical, legal, and social realm of our lives, the lived experience, the health sciences, in other words, the real world, and therefore intersect with race, racism, and racial justice. There is no topic in bioethics that can ignore race and racism” (Ray, 2022, n.p.). However, despite this, mentioning race is to deviate from the assumed objectivity and universality of the field of bioethics.

Further, Ray notes that this exclusion emerges from the fact that “We know that most of bioethicists are White and arguable because of this much of the academic work we produce centers whiteness, White privilege, and a misunderstanding of the far reaching effects of racism on health” (Ray 2021, n.p.). That is, because the majority of the participants in the field of bioethics are white, their research proceeds as if their white subject position is universal. As a universal position, the whiteness of bioethics is a result of the whiteness of the persons producing the knowledge that gives rise to the field of bioethics and whose citation forms the boundaries of the field. Sara Ahmed (2007, 2013, 2014, 2017) is valuable here: for Ahmed, academic fields take the shape of the habits of the bodies that participate in them.

It is through citation, or “the materials through which, from which we create our dwellings” (Ahmed, 2017, 16), that academic fields come to take the shape of the individuals who are most often cited and circulated within them and thereby take on a likeness to those individuals. For Ahmed, institutions become given through the repetition of decisions (Ahmed, 2006, 157); in the context of an academic field, the decision of who to cite and who not to cite is a result of a history of decisions that serves to organize the field around core documents. To this end, for Ahmed, “when citational practices become habits, bricks form walls” (Ahmed, 2017, 148), which deny access to the shaping of fields. In this case, the designation of work that focuses on the experiences of marginalized populations as “activism” and therefore not worth citing serves to structure a “brick wall” that prevents some individuals from participating in the field.

To this end, citation serves to screen and limit those who participate in the field to only those who align with the image of the field as produced by the citational habits of the field. Thus:

To be trained within a discipline is to learn to follow a citational path: certain work does not have to be regarded because it does not come into view if you follow a path, which means work can be discarded with out deliberation…Good habits in citation are about extending a line: you have to show how much you know of a field by citing those deemed to have shaped that field. (Ahmed, 2019, 168)

Turning back to Ray, who observes that the predominance of white bioethicists within the field results in the ignorance of the field towards issues of race, we might take it to be the case that only work that reproduces the “line” or the “path” trod by white bioethicists is good work by virtue of its reproduction of a history of citation. Thus, it is the whiteness of bioethicists that serves to produce the field of bioethics in the image of whiteness. For bioethics to consider bioethics work that does not proceed from whiteness as “not bioethics” is to point to who is not cited and how the field maintains its whiteness, its shape.

To this end, we could apply Ray’s observation of the whiteness and masculinity of bioethics to disability: we know that the majority of participants in the field of bioethics are themselves neurotypical, able-bodied, or do not identify themselves as disabled and so, the issues of ableism in addition to racism and other axes of marginalization persist because the bodies that are most directly involved in the reproduction and production of the field of bioethics are those bodies that most closely approximate an assumed norm. To this end, bioethical work that deviates from this norm or even asks that the broader field engage with experiences that deviate from this norm is to be rendered as “not bioethics” or “activism,” by the field, positions that enable the field to ignore the critiques made. In the context of disability advocacy, that scholarship advocating on behalf of disabled persons is treated as activism rather than genuine inquiry indicates how the citational politics of the field of bioethics serves to structure it as treating the neurotypical, the able-bodied, the sane as the universal position. In treating disability scholarship as “activism” or scholarship on race as “not bioethics,” the field may exclude this knowledge and the scholars that produce it from participation.

Citational Rebellion

In the above, it is the citational politics of bioethics that gives rise to the shape of the field of bioethics as racist, as ableist, and it is here where an intervention needs to be made. To be clear, if the citational history of bioethics has hardened into a brick wall that denies access to the field to black and brown and disabled scholars, then, as Ahmed suggests, we need “dismantling projects” (Ahmed, 2019, 96). More specifically, following Ahmed, I argue that disabled scholars should “create a crisis around citation, even just a hesitation, a wondering, that might help us not to follow the well-trodden citational paths” (Ahmed, 2017, 148) and, in doing so, become a crisis for bioethics through our refusal of the citational practices of Bioethics. We must engage in a rebellion of the oppressed as articulated by Paulo Freire:

Consciously or unconsciously, the act of rebellion by the oppressed (an act which is always, or nearly always, as violent as the initial violence of the oppressors) can initiate love. Whereas the violence of the oppressors prevents the oppressed from being fully human, the response of the latter to this violence is grounded in the desire to pursue the right to be human. As the oppressors dehumanize others and violate their rights, they themselves also become dehumanized. As the oppressed, fighting to be human, take away the oppressors power to dominate and suppress, they restore to the oppressors the humanity they had lost in the exercise of oppression. (Freire 1970, 56)

I want to stay with this description of rebellion. For Freire, the violence that emerges from the oppressed’s act of rebellion is rooted in a desire to reclaim their lost humanity. In doing so, the oppressed check the power of the oppressor to oppress and thereby enable the transformation of the situation of oppression that both find themselves in. Through their act of rebellion, which transforms the situation of oppression, the oppressed restore to the oppressor their humanity by liberating them from the situation of oppression which conditions them to be nothing but oppressors. Thus, it is through rebellion, through refusal, that the oppressed come to check the power of the oppressor to oppress and thus enable the possibility for the transformation of the situation of oppression.

Further, this act of rebellion is experienced by the oppressor as oppression itself. As Freire states:

Conditioned by the experience of oppressing others, any situation other than their former seems to them like oppression…Any restriction on this way of life, in the name of the rights of the community, appears to the former oppressors as a profound violation of their individual rights… (Freire 1970, 57)

The act of rebellion that restores to the oppressor their humanity is itself experienced as a form of oppression because it denies them the capacity to maintain the ways of living to which they were accustomed and which were predicated upon the marginalization of the oppressed. Here, a parallel exists with Ahmed’s (2010) “feminist killjoy,” as the individual who is willing to cause unhappiness in service of disrupting a social order which is protected as a moral order. That is, in challenging the social and moral order that purports to promise happiness, the feminist killjoy denies the ability of others to take pleasure in the order that promised them happiness.

There is a parallel to this act of rebellion within bioethics. Again, we can turn back to Ray, specifically her response to the ways that bioethics has denied the value of bioethics that intersects with race:

Many Black bioethicists like myself, are bucking the traditions of bioethics that don’t serve us or populations of color. Instead, we are creating lanes in bioethics that allow us to do the work that we set out to do, to study and serve marginalized populations, to bring our perspectives to all of the typical topics studied in bioethics, and challenge the typical ethical and legal frameworks we have often so lazily come to rely upon. (Ray 2022, n.p)

Ray’s “bucking the traditions of bioethics” can be read through the above framework as a necessary act by the oppressed to check the power of the oppressor. By rejecting the traditional frameworks, with themselves do not fit the experiences of marginalized people, and establishing her own traditions, among which she counts Black Bioethics, Ray and her colleagues are checking the power of the field of bioethics to maintain the structures of oppression that contribute to the marginalization of Black and other non-white bioethicists.

Further, as Ray notes, she and her colleagues are engaging in this act of rebellion within the field of bioethics, and not externally as indicated by Stramondo’s appeal to direct action. To be clear, this is not to say that Stramondo’s direct action and activism are not necessary; rather, it is to say that rebellion in a Freirean sense may address many of Stramondo’s concerns about the failure of uptake of philosophical arguments in favor of valuing disability and disabled scholars.

Further, Ray and her colleagues are doing more than bucking the tradition: they are interrupting the citational politics and the habits of citation within the field of bioethics which have come to define what is and is not bioethical. Sara Ahmed (2014) describes this practice as “not philosophy,” or a philosophical practice that aims to create room within philosophy for those who are considered “not philosophers.” Here “not philosopher” does not specifically mean an individual who does not practice philosophy, but an individual who is considered “not” by virtue of some “lack” in their embodiment, in their way of being in the world. Taken in this way, that Ray’s work is “not bioethics” is to point to a presumed lack, or deviation from the accepted shape of philosophy; that Singer considers disability scholarship to be “activism” and “not philosophy” indicates that such work deviates from the established norm of philosophy.

For Ahmed, not philosophy is not merely to fail to reproduce the citational politics of the field. Indeed, “not philosophy” might engage in practices of citation that refuse to place texts in their proper histories. Here, a “proper history” might be to frame a text as contributing to the forward advance of the academy, of human flourishing, rather than to cite a text as participating in a history of marginalization, of denying the ability for others to flourish in ways that enable their growth. That is, to present a history of bioethics as a political project that maintains the marginalization of disabled persons, as Tremain (2017) does would be one way of “sideways or across, thus creating a different angle on what is being reproduced,” (Ahmed, 2014, 15) which then denies the reproduction of a field that maintains ableist oppression.

Thus, as a form of rebellion, “not philosophy aims not to reproduce the body of philosophy by a willful citational practice: if philosophers are cited…they are not only cited alongside those who are not philosophers but are not given any priority over those who are not.” (Ahmed, 2014, 15) It is this denial of priority that scholars in bioethics would experience as “oppression.” After all, as Ahmed notes, to learn a field is to learn the citational practices that serve to extend the “line” predicted by the field itself. (Ahmed, 2019, 168) And it is in the rejection of the privileging of philosophers, and not merely in the citation of non-philosophers, that acts of citational rebellion can expose the gap between the ways that bioethics represents disabled experience and the ways that disabled people experience the world through providing a new path, a new history for disabled scholars to follow.

Thus, disabled scholars and bioethicists need to engage in acts of citational rebellion, need to create a citational crisis, to create their own citational histories, and, as Ahmed suggests, to cite existing features slantwise or “out of line” with their established understandings. Doing so, insofar as it disrupts the citational habits that give rise to the shape of the field is an act of rebellion against the field, against bioethics, but as Freire states, it is a rebellion born out of a desire to restore humanity to bioethics.

“This Is a Rebellion, Isn’t It? I Rebel”

While Ahmed describes this citational method as “not philosophy,” it is important to understand that this act of “not philosophy,” of citational rebellion, can be understood as “not bioethics” or “bioethics activism” to be specific, and serves to check the power of the oppressed to oppress by instituting a new citational history, one which circulates within the field. As Ray notes, this act of rebellion is not intended to “save” bioethics, but to transform it into a place where marginalized scholars can thrive. Indeed, the very worry that further intrusion of “activist scholarship” into bioethics by Singer and his co-authors at the beginning of this piece is a recognition that the acts of rebellion among disability bioethicists and other scholars are forcing changes to the field of bioethics. This, I think, should be the point.

It is because the shape of the field is comfortable for people who aren’t subject to its oppression that any attempt to change the citational politics of the field will be uncomfortable, will be viewed as oppression, and will be treated as if it is burning the field to the ground. To this end, many scholars have been hesitant to engage in the kind of direct action articulated by Ray to burn the field to the ground. However, burning the field to the ground is necessary if we want bioethics to serve the end of enriching humanity. That is, nothing in the above requires the abandoning of the project of bioethics: indeed, such a project is necessary insofar as bioethics provides the norms, the habits of conduct for appropriate action in spaces beyond academic philosophy. Insofar as work like Singer’s and others is taken up to guide decision-making processes in medical fields, most notably during the COVID-19 pandemic, bioethics is a necessary philosophical enterprise.

However, the norms of conduct that contemporary bioethics prescribes are not themselves conducive to human flourishing. Insofar as bioethicists refuse to take seriously, to even acknowledge the violence that their field engages in, and, it refuses to take up these critiques in such a way as to expand the field, bioethics must first burn before it can perform its vital social role. Indeed, as Ray states: “we have to go beyond tokenism, beyond lip service and make changes to the ways we practice bioethics and make it an environment that diverse bioethicists want to be a part of. If we don’t then bioethics won’t survive the changing world,” (Ray, 2022, n.p.) which, is to say that bioethics won’t survive because the acts of rebellion by the marginalized to restore humanity to bioethics will ultimately reveal the ways in which bioethics itself is not concerned with human flourishing.

Instead of fire from which something brand new is born, instead of the rebellion that gives rise to something more, the rebellion of disability bioethicists, of bioethicists of color, of trans and queer bioethicists, will create a crisis of citation that renders “traditional” approaches to bioethics obsolete as new ways of doing what bioethics is intended to do take shape. This may be the unfortunate result that Singer and his colleagues fear, however, it does not have to be this way. Intervention in citational politics through acts of rebellion allows the shape of the field to change in ways that more ways of experiencing are included in the structure of the field. But this is only possible if the field is willing to change. Refusal to do so, on the other hand, is indicative of a desire to maintain the existing structures of oppression or exclusion such that only some people can be comfortable within the field. The solution? Burn it to the ground, starting with the citational politics. After all, to paraphrase Ahmed: if talking about ableism and eugenics is seen as damaging bioethics, then we need to damage bioethics.


Bibliography

Ahmed, S. (2007). A phenomenology of Whiteness. Feminist Theory, 8(2), 149–168. https://doi.org/10.1177/1464700107078139

Ahmed, S. (2014). Willful Subjects. Duke University Press.

Ahmed, S. (2019). What’s the Use?: On the Uses of Use. Duke University Press.

Ahmed. (2017). Living a Feminist Life. Duke University Press.

Freire, Paulo. (2005) Pedagogy of the Oppressed. New York, New York: Continuum, 2005.

Ray, K. (2022, February 11). Blog – “We are not here to save bioethics”: Amplifying Diverse Voices in Bioethics. Bioethics Today. Retrieved August 15, 2022, from
https://bioethicstoday.org/blog/we-are-not-here-to-save-bioethics-amplifying-diverse-
voices-in-bioethics/

 

 

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