This editorial can be found in the January 2023 issue of the American Journal of Bioethics (link).
In “Bioethics and the Moral Authority of Experience,” Nelson et al. explore what they refer to as “The Paradox of Experience.” The authors characterize this paradox formally as follows:
(A) Personal experience with x is an asset in normative debates about x when such experience grants epistemic access to knowledge about x that is either difficult or impossible for those without experience of x to access.
(B) Personal experience with x is a liability in normative debates about x when such experience generates (i) a vested interest in the outcome of the debate, or (ii) a perspective that may not be representative of the experiences or interests of others.
They hedge their use of the term paradox by conceding upfront that “this is not a paradox in the strict, logical sense,” instead claiming they aim to “emphasize the epistemological tension often present in appeals to experience”. However, even with this hedge, the use of term “paradox” to describe the epistemology of disabled and chronically ill people’s testimony in bioethical discourse is misleading, if not an outright defense of the status quo of the field that holds disabled bioethicists at its margins. The reason is that the term paradox fails to recognize the power asymmetry that is the context of the so-called tension between disability experience as an asset and as a liability.
In both popular vernacular and philosophical jargon, the term paradox does not have a singular, agreed upon meaning. Nevertheless, it consistently evokes the notion of a self-conflicting whole composed of opposing parts that are balanced in a sort of contradictory equilibrium. If one side of the paradox was disproportionately weighty, it would no longer be a paradox because the contradiction would resolve in that side’s favor.
As such, by characterizing the epistemological value of disability experiences to bioethics as paradoxical, Nelson et al. imply that the benefits and risks of accepting the knowledge of disabled people are more or less equally weighty. The assets and liabilities cancel each other out to form the paradox. The notion that these epistemic forces are offset in a way that creates a tension between them may be appealing in the abstract. However, if we assess the facts on the ground and view this question through the context of the power dynamics of the discipline, there is no paradox. The present, actual conditions of bioethics as a field systematically excludes disabled people. This exclusion, even if not deliberate, expresses and maintains the power asymmetry that already stacks the deck against the uptake of moral knowledge generated by the experiences of disability. Any liability this experiential knowledge entails is far more than offset by the context of this power asymmetry. If mainstream bioethics adopts an epistemology that presumes the existence of a “paradox,” it will further contribute to the marginalization of disabled people by heaping additional skepticism upon a group that is already weighed down by the institutions and practices of systematic exclusion.
Charles Mills’ makes a distinction between ideal and non-ideal theory that is crucial to my argument. In a 2005 paper, Mills argues that all normative ethics can be thought of as ideal in the sense that it makes an appeal to some set of ideals. However, there is also the problematic sense in which some moral philosophy attempts to deploy the ideal-as-model. As Mills relates, “for certain P (not all), it will also be possible to produce an idealized model, an exemplar, of what an ideal P should be like…. Unless the P in question is itself an ideal P, then obviously a gap will exist between it and the ideal”. As Mills and many others have argued, this gap between the ideal conditions of moral theory and the real-world conditions of moral practice can render solutions derived from ideal theory destructive when applied in practice.1 Mills further argues that a commitment to this methodology of idealizing the conditions of moral practice when theorizing about it is deeply ideological. Ideal theory’s ideological character is essentially conservative, rewarding those positioned to benefit from the status quo.
Despite assurances that “Objectivity in bioethics is neither possible nor (arguably) desirable,” Nelson et al. abstract away from the actual conditions of the field of bioethics for disabled people as they construct their paradox. That is, the authors ignore, and therefore ultimately work to maintain, the power structures of the field that continue to hold disabled people at its margins. For example, to my knowledge, at this point in its history, there is not and has never been a PhD granting philosophy or bioethics program in the United States that has hired a wheelchair user onto the tenure track. Of course, this sort of disparity is likely not due to conscious, deliberate discrimination, but is the collective result of both implicit bias and systemic ableism of various kinds. Arguing that bioethical knowledge held by disabled people is typically offset as an asset by competing liabilities to form the tension of a paradox does not work to undo, but instead conserves this exclusionary status quo.
To offer a thick description of the bias and systemic ableism that excludes disabled people from full participation in the field, I can appeal to my own experiences as a wheelchair user. In October of 2022, I attended the annual meeting of the American Society of Bioethics and Humanities, despite some misgiving about the feeble infection control mandates. Upon arrival at the airport in Portland, I waited nearly four hours for my wheelchair accessible taxi to arrive and transport me to my hotel because there are so few of them in service there. Later in the week, I used Portland’s accessible light rail system to go to a networking dinner, only to find the reception I had been invited to by a major bioethics center was located in a private room at the top of a flight of stairs. When my flight home landed, I found the airline baggage handlers had somehow rendered my power wheelchair entirely inoperable. None of these anecdotes are outliers to my experience of conference travel or my professional life generally speaking.2
Relating these stories isn’t meant to evoke sympathy. Instead, I wish to appeal to my own experience as a source of knowledge, not of any particular bioethical issue, but of the power structures of the discipline broadly. Such a broad analysis of the field and disabled people’s place in it is lacking in Nelson et al.’s paper. In my view, that is its fatal flaw.
Of course, Nelson et al. do recognize at great length how feminist epistemology might describe disability experience as an asset to moral reasoning, when setting up that side of their paradox. However, the authors only examine how this sort of situated, embodied thinking may apply to judgements about particular bioethical questions themselves. They do not adequately consider the standpoint of disabled people vis a vis the question of who has been systematically included or excluded from the field.3 By abstracting away from the context of this power dynamic, the authors idealize the conditions under which the epistemic authority of disabled people is judged. That is, Nelson et al. commit themselves to doing ideal theory.
Perhaps Nelson et al. would respond that my testimony about the power asymmetry of bioethics is itself to be met with skepticism because of the liabilities generated by my own conflict of interest and only partially representative experience.
Obviously, I have a very direct interest in the field and its practices becoming less exclusionary of wheelchair users like myself. In practical terms, the less time I spend figuring out how to navigate inaccessible environments, the more time I can spend on teaching, writing, and service. Nevertheless, it seems absurd to suggest that my interest in inclusion represents a unique conflict of interest that ought to evoke skepticism toward my experiential knowledge in particular, as Nelson et al. suggest. If there is a conflict of interest, it is also asymmetrical. Namely, there is an asymmetry between my interest in ending exclusive practices and the far more powerful opposing interests of those who are ambulatory and benefit from the status quo. The exclusionary structures of bioethics are supported by the interests of people that easily rely on ride share to pick them up at the airport, enter into any given room at a restaurant for a reception, and fly on an airplane without worrying about being rendered immobile. This powerful majority stand to pay a significant cost by, say, holding ASBH’s national meeting in a hybrid space so that inaccessible ride share sedans, second floor banquet rooms, and broken wheelchairs don’t pose a professional barrier for people like me. It is this asymmetrical power dynamic that sustains the more salient conflict of interest, which favors the status quo for non-disabled members of the profession. When the power distribution in a given environment is set up as a zero-sum game, it is the experience of those with more power and an interest to preserve it that we ought to view skeptically.
Of course, while using a wheelchair is a paradigmatic disability, there are many other disabilities that may be better represented in professional bioethics. Maybe my disability experience is not fully representative and the power asymmetry is not as dramatic as I describe. For example, it would not be surprising to find that some disabilities, especially those like anxiety or depression, are overrepresented in even elite philosophy or bioethics graduate departments. The fact that these disabled people are present in the field at the highest levels might be evidence that my description of the power asymmetry is wrong because my experience is only partially representative. However, while the overall number of disabled academics may be substantial, the number of faculty that work in bioethics at PhD granting departments and openly identify as disabled in any way – and use that experience to ground their scholarship – can be still counted on a single hand. As such, we can conclude my experiences of bias and systemic exclusion that prevent disabled people from deploying their experiential knowledge in bioethics are not isolated to me or to even people that use a wheelchair. The specific barriers to participation will be different for people with other embodiments, but just as there was no unique conflict of interest present in my testimony, there is no unique problem of partial representation when identifying the power asymmetry that structures bioethics’ status quo. If the particulars of my experiences of inaccessibility are not universal, it is not a reason to be skeptical toward my testimony about the power asymmetry in bioethics. Instead, this should motivate the field to broaden the range of voices providing testimony describing the details of the power asymmetry and the barriers it raises.
In sum, I have argued that, when we refuse to abstract away from the power dynamics of the field of bioethics that contextualize the uptake of the experiential knowledge of disabled bioethicists, the so-called “paradox” of experience quickly dissolves. This is not because the power asymmetry somehow renders the knowledge of disabled people infallible. Rather, the paradox dissolves because any epistemic liability disabled scholars hold is far outweighed by the substantial barriers we must traverse to be in a position to provide that knowledge at all. Scrubbing disabled moral knowledge of the power asymmetry that gives it context and then regarding it with greater skepticism than shown toward that of non-disabled colleagues only reinforces this the exclusionary status quo, which ought not surprise anyone, given the ideological character of ideal theory. After all, Mills demonstrated almost two decades ago that the function of ideal theory within professional philosophy was to preserve the status quo of power. Ideal theory’s ideological function in professional bioethics is no different.
Notes
1. For a full discussion of non-ideal theory’s role in bioethics, see Victor and Guidry-Grimes (2021).
2. Lest one think my experience of ASBH is unique, see a blog post from disabled bioethicist that references the 2014 meeting: Peace (2014).
3. For a far more comprehensive analysis of the relationship between mainstream bioethics and disabled people, see Scully (2008), Tremain (2017), and Stramondo (2016).