The Life Worth Living: Disability, Pain, and Morality. By Joel Michael Reynolds. Minnesota: University of Minnesota Press, 2022, 216p. (paperback). ISBN: 978-1517907785. US List: $21.95.
Western “philosophical, bioethical and public culture” (10) narratives of disability are often underlined with what philosopher Joel Micheal Reynolds theorizes as the “ableist conflation” (4)—the idea that disability is inherently synonymous with suffering, pain, isolation, and even death. This is where Reynolds’s newest work, The Life Worth Living: Disability, Pain, and Morality, begins—with the question of how, when disability is seen as the same as constant distress and mortality, disabled life is devalued and positioned as intrinsically undesirable. Reynolds further posits an examination of chronic pain beyond the ableist conflation. Pain, while separate from disability, operates as a material “force” (12) that demands reorientation.
The Life Worth Living consists of three parts that further unfold the question of whose life holds value under ableist capitalism: “Pain,” “Disability,” and “Ability.” In “Pain,” Reynolds draws on both a survey of theories of pain—religious-moral, neurobiological, humanist, existential, and Medical—and his mother’s personal narratives of living with complex regional pain syndrome to shape a phenomenology of chronic pain. This phenomenology consists of four features—foreboding, beholdenness, bioreckoning, and disruption—which each “exacerbate or mitigate each other” (50). For example, pain is simultaneously disruptive in its beholden and consuming nature under capitalist life demands, and foreboding in its demand for bioreckoning one’s life through social and medical intervention. From this structured loop of chronic pain, Reynolds formulates three categories of pain: Component Pain/Feeling Pain, Constitutive Pain/Integral Suffering, and Consuming Pain/Extreme Suffering. The ableist conflation of disability and pain assumes that disability must always place an individual in the category of suffering or even extreme suffering. This assumption, however, is clearly demonstrated as false.
Building on disability studies scholarship, Reynolds begins part two, “Disability,” by examining three primary theories of disability—personal (such as the moral and medical models), social, and post-social—to illustrate a general inconsistency in understanding disability and to underline the necessity for a phenomenology of disability and disabled embodiment. Through a thorough engagement with S. Kay Toombs’s personal narratives of multiple sclerosis, Reynolds provides three “general structures of the lived experience of disability” (93)—attentional (re)configuration, personal-social (re)configuration, and horizontal (re)configuration—which emphasize disability as a shaper of meaning, relationality, socio-spatial salience, and knowledge production for disabled people. Counter to the ableist conflation, this phenomenology of disability demonstrates that diverse ways of being do not mean worse or bad ways of being.
In part three, “ability,” Reynolds again begins by examining the existing theories; this time focusing primarily on the theory of “personal ability” (117), which is premised both on both the assumption of a standard body capable of perfectibility—centrally, through health, regard, and control—and on a secondary conflation of “individual autonomy” with “full independence.” Reynolds further points out in this part a central idea for the book at large: that ability articulates avenues of access. For Reynolds, ability is relative to situational and historical context and could shift to an inability at the loss of a “structural support assumed to be a constant” (130). The idea of ability as a constitutive variable dependent on “form, content, and value” (137) is central to Reynolds’s phenomenology of ability—or, in the end, a phenomenology of care systems that determine whether someone is “made able (or not)” (130). By pointing out how systems of care are personal, social-interpersonal, and civic-political, Reynolds illustrates the numerous ways that systems existing under ableist capitalism (re)produce both ability and disability. The ableist conflation is fully deconstructed under the weight of “the interaction and interanimation of each [body or environment] relative to caring systems” (151).
Reynolds’s The Life Worth Living ultimately calls for a reconsideration of the ableist conflation of disability to build an anti-ableist future—one where disabled people are valued and disabled life is celebrated as human diversity rather than abhorred lack. Overall, this well-researched and passionately written book urges us towards a reconsideration of pain, disability, and ability to imagine more equitable systems of care. While those studying disability studies and philosophy may be an obvious audience for The Life Worth Living, anyone interested in the ways we discuss disability, bodies, and care for each other will find memorable value in this work.
