The idea that public policy and medical practice pay insufficient attention to people’s embodiment has become commonplace amongst an otherwise diverse group of theorists including phenomenologists, disability theorists, and feminist legal theorists. Despite their differences, these diverse intellectual currents converge on the idea that we ought to take better account of how people are embodied.
In this paper I first examine the argument that medicine fails to take people’s embodiment seriously. Phenomenologists such as Drew Leder, S Kay Toombs, and Fredrik Svenaeus argue that modern medicine is overly focused on pathology and disease, to the detriment of exploring the illness experience. As a consequence, they argue, medicine has an incomplete understanding of people’s suffering.
In response, the paper argues that, although some healthcare professionals may pay insufficient attention to how people are embodied, where this does occur, it constitutes poor medical practice. The proper goal of medicine, I argue, is healing. Healing isn’t simply a matter of curing disease; it also requires the alleviation of suffering. I argue that, unless medicine takes people’s first-person experiences seriously, it runs the risk of (i) misdiagnosing people’s ailments (thus delaying care), (ii) perpetuating epistemic injustice, and (iii) recommending treatment regimes which do not align with people’s values and/or actual needs.
The complaint that we take insufficient account of people’s embodiment isn’t limited to the clinical interaction, it is also directed at health and welfare policy. Drawing on the results of the Cumberlege Review, as well as criticisms of the administration of both the Employment and Support Allowance (ESA) and Personal Independence Payment (PIP), I argue that, although public policy in general takes account of some features of people’s embodiment, the first-person perspectives of women and disabled people are not given the credibility they deserve. The result, I suggest, is the perpetuation of epistemic injustice.
Having established the need to take embodiment seriously in medical practice and public policy, the paper then sets out two challenges to doing so. The first challenge arises from the fact that there is lots of diversity in how people are embodied. As a consequence, it will often be difficult (if not impossible) to craft policy that satisfies everyone. Doing what is required to alleviate the suffering of some might come into conflict with doing what is required to alleviate the suffering of others. If we are to take embodiment seriously in public policy, we need some way of resolving situations in which we are pulled in mutually incompatible directions.
The second challenge consists in balancing the need to subject people’s testimony to scrutiny and the goal of avoiding the perpetuation of epistemic injustice. In public policy contexts, we can’t simply take people’s testimony as given. I argue there are three reasons for this requirement.
First, part of being a reasonable participant in public policy context is being open to a call for justification from others. Second, subjecting people’s testimony to scrutiny is important as a means of ensuring that policy is non-arbitrary and based on facts. The third reason it is important to subject people’s testimony to scrutiny is based on the value of fairness. How people are embodied can determine both the level of state support people are entitled to and the extent of their obligations to contribute to the cooperative scheme. Given that the benefits being distributed are non-trivial, we have fairness-based reasons to ensure that they are delivered to those who are entitled to them and denied to those who aren’t.
The solution to both these challenges, I argue, lies in developing some form of just procedure for soliciting people’s testimony and taking it adequately into account in the policy development process.
A just procedure, I suggest, would be inclusive of a variety of perspectives including professionals, patient advocacy groups, patients themselves and other affected persons. The reason the procedure needs to be inclusive is that it is difficult to see how we can claim to take someone’s perspective into account without providing some mechanism through which their voice can be heard. Given that not everyone can participate in decisions, a just procedure will necessarily have to be a representative procedure. I suggest there are numerous forms this could take, and which form of representation is best will depend on the circumstances. What is most important is that participation have some form of meaningful influence on the policy process. Purely consultative institutions merely pay lip service to the idea of taking people’s embodiment seriously.
A just procedure would also seek to solicit testimony in a just way. The goal of the procedure would be to ensure that, when inquiring into someone’s first-person embodied perspective, they are treated as epistemic peers and their testimony is given due consideration. The paper concludes by offering some suggestions on how this might be achieved, for instance: training people to use a phenomenological toolkit, fostering spaces for marginalised voices to develop their own terminologies to account for their experience, and assisting participants in developing the virtues of sympathetic listening.
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Funding: Work on this was generously supported by a Wellcome Trust Investigator Award in Humanities and Social Sciences 2019-2024 (Grant No: 212507/Z/18/Z)