Reviewed by Linda Henderson
In Beyond Disability: A Matter of Listening, Anne-Lyse Chabert directly invites the reader to listen to her experience of living with a neurodegenerative disease and what that experience reveals about being human. As she writes,
Reader, can I invite you to listen to my journey? You will undoubtedly realize that by lending an attentive ear to people whose journey seems a priori quite different from yours… we can live otherwise, since we already do.
The thought of her readers encouraged her “to set down my experience on the page and led me in my writer’s journey, like Montaigne in his Essays, to discover many marvels.” With her readers in mind, she creates a reflective process with remarkable clarity and restraint about the day-to-day complexity of her disease. She shows how listening to this complexity is a way of living in dynamic relationships with a changing body, a changing world, and a shared human condition.
Chabert is a philosopher in her early thirties and has lived with Friedreich’s Ataxia, a rare, inherited neurodegenerative disease, since its symptoms first appeared when she was ten years old. She is a French philosopher, and this book—now available in English translation—brings her work to a wider audience. Friedreich’s Ataxia damages the spinal cord, peripheral nerves, and the cerebellum. The disease gradually reduces a person to a state of disability, affecting the whole motor system—walking, writing, speaking. Most activities of daily living become impossible without others’ help.
Her main thesis is to “set out my own intimate experience that may destroy the prejudices associated a priori with a major handicap.” She organizes her collection of essays into four axes, four compass points. The first is her personal life, “how our bodies modulate our perception of reality and affect it.” The second axis concerns devising solutions—looking for opportunities to discover our own sources of happiness. She then asks, in the third axis, “What is the degree of freedom one needs in life?” She especially explores answers to this question in terms of institutions and the environment. Lastly, she explores new ground—roundabout ways one may arrive at an unforeseen perspective. For example, a calligrapher who recovers his skill after an accident by learning to hold a brush in his mouth.
Early in her book, Chabert refuses a familiar framing of “acceptance.” She doesn’t accept or reject her disease. Instead, she has accepted “…the idea of struggling with it rather than against it.” This distinction is foundational to her work and to her expansion of what struggle means to her. Life is not something to be reclaimed from the body, but something to be lived through in its changing conditions. In this regard, she clearly sees her body as her “window onto the world.” As she writes,
However laborious or difficult, I learned to listen in before everything ‘reset’ itself. I learned to be increasingly patient with myself …I could only live my life as my body presented it to me at any moment.
Chabert elegantly portrays the mind-body connection. She resists any separation between the two. For her, “one always thinks with the whole of one’s body.” She writes from within a lived experience in which the body stays a companion—central to feeling, thinking, and engaging with the world. In her words, “my body is my most intimate ally.” Her insistence challenges the hierarchies that often diminish the disabled body. She refuses the view that a disabled body is a kind of confinement.
What she does instead is build an elegant and persuasive case for the body as the condition for being in the world – our ontology. At the same time, the body is not only the condition of being, but a form of embodied epistemology, how we come to know how to be in the world. She could not live her life without its mediation: “…it was when I entered the ring to wrestle with my disease that my life could begin.” She does not want to be divorced from her body and does not think of herself as ill each day when she awakes: “I’m alive, that’s all.” In this way, she flips the common exhortation to accept one’s disability as a way out of despair to one that recognizes a passive form of acceptance as worsening one’s condition: “…the more I accepted my disease—acceptance meaning doing nothing and letting it overcome me—the more all my motor neurons would deteriorate and disappear. How could anyone expect me to accept that?” In this way, she flips acceptance on its head by supporting, to the utmost, the physical capacity of the body she inhabits.
Chabert’s insights into her body-as-ally mean that she is exquisitely aware that her adaptation at any given moment to a new deterioration in her body cannot prevent her future adaptability. She abandons earlier equilibrium “that no longer corresponds to my ever-changing situation, moving on to a new state more in tune with it.” In not accepting her disease as something to give up to, her frequent adaptations show us her resolve in keeping her adaptability. In other words, life leads her dance—as it does for all of us. We are often too in denial about this reality. So, her leading principle, if not philosophy, is this: “If a treatment presents itself, it will be an occasion once again to adapt myself to it …every time one road was closed …others opened up.”
One idea of Chabert’s moved me deeply: her careful distinction between autonomy and dependency. In many conversations about disability, these are often assumed to be synonymous. Chabert shows, instead, that they are not the same. Dependency—on others for care, for movement, for communication—does not cancel autonomy. Autonomy can persist, even deepen, within forms of dependence that are visible and shared. Indeed, she reflects that she has “…never felt that I was lacking or missing anything.”
Her insight powerfully shifts the conversation away from loss and toward relationship. We are all already living in forms of interdependence we rarely name. Chabert’s reflections show that what we call disability is not outside the human condition but reveals it. As humans, we have dependencies, fragilities, and ongoing needs for adaptation. This is the human condition—independent of whatever form our bodies and minds take.
Chabert also has a clear awareness that disability is not found in an individual alone. It appears in the interaction between body and environment—physical, social, institutional. The obstacles she meets are not inevitable; they are shaped. In other words, obstacles created by human beings carry with them an underlying imposition of pseudo-lethargy toward disability. For Chabert, this is the “supreme offense, the single most monstrous insult to my being.” She does not treat fatigue simply as a symptom, but as a revealing condition of humanity—one that exposes how quickly the ordinary can become difficult. In these moments, when nothing works, ”something essential about our shared human condition comes into view.” It means, for each of us, attending to fatigue, to the body’s limits, to the presence of others, and to the ways life continues to open even as certain paths close. Her recognition gives her book an ethical force: what kind of world are we willing to build?
Throughout her book, Chabert elegantly undoes the assumption that disability marks a different kind of human being. Through listening, that presumed difference gives way to a recognition of shared conditions, shared humanity, differently lived—not through argument, but through lived attention. What is perhaps most striking is the tone of the work. There is no self-pity here, and no attempt to make difficulty inspirational—only a steady, unembellished attention to what is. This is the kind of world she has built—a reorientation. In inviting us to listen, Chabert does not ask for sympathy, but for attention—and in doing so, alters how we understand both disability and what it means to be human. She invites us to consider that a life cannot be measured by what it lacks, but by the depth with which it is lived. This is the heart of her message, one that I, as a reader, have gratefully received as her gift.
Title: Beyond Disability: A Matter of Listening
Author: Anne-Lyse Chabert
Publisher: Lived Places Publishing
Year: 2025
Note: This book is a translation of Vivre son Destin, Vivre sa Pensée (Albin Michel, 2021).
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About the Reviewer
Linda Henderson is a writer and emerita professor of organizational communication based in the San Francisco Bay Area. Her poems and flash memoirs explore disability, embodiment, memory, and return. Her work appears in Wordgathering: A Journal of Disability Poetry and Literature, with a poem forthcoming in Psychological Perspectives.