As shown by the renewed backlash against health insurers, this time unleashed by the United Healthcare CEO’s killing in Manhattan, there seems to be something about health. Those of us who work in health law likely chose this field because we’ve always known that, indeed, there is just something about health. But what exactly is it? What makes it so special, so intractable, so compelling, such a lightning rod? Elizabeth Barnes‘ new book, Health Problems, takes this question squarely on, and concludes that we might never solve the mystery, even if we must continue to probe.
The signature puzzles she picks out are 1) the relationship between health and well-being, 2) the relationship between health’s objective nature and its subjective aspect, and 3) the relationship between health and disability. These puzzles are central to our work. They loom over so much of our scholarship that I am constantly bracketing these questions or relying on rough and provisional stand-ins. My perverse skirting of these central matters so as not to get unproductively mired allows me to make at least some progress on other questions that demand urgent answers. I’ve always felt that perhaps in making progress on adjacent questions, we have a chance of shedding light on these enduring puzzles too. Elizabeth Barnes helps locate this approach: first by mapping the bracketed space through her clean no-nonsense chapters (a division of labor that frees us to tackle other tasks) but also by providing perhaps a rationalization for approaching these questions a bit sideways.
The explanation lies in her final chapters, where she suggests a posture of “ameliorative skepticism.” It strikes me as a useful strategy for how to approach certain topics that feature a heavy dose of social construction (gender, others have suggested, is another) and that may be so close to us that it’s hard to get any distance from the mirror to see what we have made of ourselves. Because healthcare and public health are key social practices through which we work out how it is to be alive with one another and what that entails, these practices can’t help being sites of irreducible contestation responding to our many requirements. Part of the mystery and contest is over the extent to which our being alive resides in the body and the extent to which it transcends the body. Small wonder then, that the concept we’ve wrought through these practices is neither unified nor coherent. Barnes cautions against expecting otherwise.
My takeaways from her discussion of the first puzzle include a resolve to temper my habit of letting health stand in for flourishing. Barnes reminds us of what is at stake when I conflate the two. For one, overvaluing health impoverishes our understanding of human flourishing, as the narrow tech-culture trend of biohackingillustrates. Moreover, such elision can undervalue the richness and fullness of the lives of those with serious disabilities (although the two categories of disability and health loss come apart as well). Finally, Barnes analogizes loss of health to the experience of grief in a way I found helpful. Part of being alive is coping with the horizon of one’s frailty and mortality, with the awareness that at any point one could no longer be alive or could find oneself “navigat[ing] the world in a body that falls outside…how we expect bodies to function” (169). So, any picture of human flourishing or wellbeing must save room for loss of health as well.
On the quasi-objective, quasi-physiological nature of health, Barnes acknowledges that “sometimes things like health are normatively significant for reasons independent of how you feel about them” (P. 97). At the same time, health is inescapably subjective because it is “partly constituted by our reactions” (P. 97). She reminds us of this subjective phenomenology, including the primal feeling of being “‘at home’ in your mind and body” and the flip-side experience of illness as constant “aware[ness] of how you feel,” your vulnerability, your instability, and your “constantly interrogating whether you can accomplish normal and everyday tasks” (P. 52). This subjective distress cannot be ignored, since the urgency of how badly a person feels is in no small part what we are trying to address when we tackle people’s health problems, rather than just the biomarkers, functional limitations, or the like. Very little in health justice can be addressed without understanding how we’ve distributed suffering, how we’ve constructed suffering, and how people have internalized their expectations of suffering, a point to which I will return.
Third, Barnes emphasizes that disability and health come apart but that the avoidance of medicalization and the related social view of disability as “mere difference” is not adequate. Barnes insists we must be able to properly acknowledge health needs and health loss and to adequately recognize healthcare as one of the most important priorities for what we owe one another in case of disability, even as we celebrate the full, flourishing, and indeed healthy lives of people with disabilities.
Barnes then dwells quite a bit on a third side of the triangle, the relationship not between health and disability but between wellbeing and disability. It turns out that wellbeing is not necessarily lower for people with what she calls “paradigm” disabilities (like spinal cord injury, achondroplasia, or blindness) (P. 142). But for another set of conditions, disability and reduction in wellbeing are more closely correlated. The conditions she identifies as associated with poor wellbeing are “non-specific chronic pain conditions (such as chronic back pain, headache disorders, or fibromyalgia) and mental health conditions (such as generalized anxiety or depression)” (P. 142). These are, in fact, “the most common reasons that people in Western countries do things like seek disability benefits or ask for workplace accommodations.” And these “tend to be substantially correlated with reduced self-reported quality of life” (P. 142).
Barnes includes this discussion as a qualifier and an additional dimension of complexity in her picture, frustrating conceptual closure. Indeed, this gap in wellbeing effects for different types of disabilities presents challenges for many accounts of health, even, Barnes acknowledges, her own (P. 176). It also opens out into a new kind of inquiry beyond Barnes’ book. It puts me in mind of Mary Crossley’s recent book, Embodied Justice: Race, Disability and Health. Crossley’s is part of a literature that frontally examines how the distribution of disability serves among the cumulatively layered and mutually reinforcing forms of adversity (poverty, trauma, simultaneous unemployment and overwork, carcerality, disruption of family support structures, housing instability, the built environment, etc.) that map onto race and perform a familiarly patterned sorting of life chances. To the extent that disability functions as part of the reinforcing systems of disadvantage and immiseration, it is also a site of struggle and resistance over this apparatus that is the underside of our systems of competitive, disciplinary, “meritocratic” allocation. The category of “disability” for the conditions most implicated in this allocation might be showing up precisely because of its relationship with suffering and the gatekeeping of opportunities to flourish. Coherence and unity are elusive because this too is at stake when we fight over the scope and meaning of health. This is the kind of “messy” thread that Barnes does not address, but which her ameliorative skepticism allows us to pull harder, rather than lop off.
