Other-Person-ness and the Person with Profound Disabilities

In this relatively thin volume, Pia Matthews has managed a comprehensive and fluid covering of how discourse on personhood can shape new ethical commitments to individuals with profound disabilities. Her latest book, Other-Person-ness and the Person with Profound Disabilities, is a marked achievement from a scholar with lived experience of caring for individuals with profound disabilities. Offering both philosophical insight that connects the significant thinkers of the twentieth-century continental tradition, and her reflections on caring for a loved one with profound disabilities, Matthews’ account shows how philosophy can bring important insight into the dignity and nuance of human life and promote the need for social change. The chapters take the reader through some of the key phenomenological and existential thinkers of the twentieth century, starting with the foundations of personalism in Emmanuel Mounier and ending in Karol Wojtyla's discourses of belonging. Weaving between Jewish, secular, Protestant, Catholic and non-Western accounts, the concepts of otherness are explored and contextualized with historical and philosophical detail. This ambitious philosophical exegesis is then applied to the discourse around care for, and understanding of, the other person with profound disability. Due to the broad scope of the book and the accessibility of conceptual language, this book will appeal to practitioners, academics, and activists alike.

In the introduction, Matthews writes about the complexity of ‘otherness’. This much-used philosophical term has dominated continental and interdisciplinary discourse in the past century and as a result can tend towards jargon. Matthews, however, formidably outlines just how significant the ‘other’ is to notions of care for people with profound disabilities. What Matthews highlights with clarity is how each account raises its own important question about personhood and care. She also expands each account intomore general philosophical questions about language, communication, and approaching any human ‘other’ whose own way of being in the word presents a particularity at the heart of personhood. The reader will find themselves grateful for the examples that Matthews gives, drawing on her own lived experience and those of the thinkers such as Mounier whom she draws on. As these concrete examples serve to anchor and develop the work in vivid detail, I would, at times, have appreciated even more rooting in experience to clarify the challenging concepts.

In laying out existential and phenomenological voices from de Beauvoir to Wojtyola, Sartre to Levinas, Matthews shows how philosophy can help us to resist simplistic understandings of human experience. Whilst portrayals of otherness can often reduce the ‘mysteriousness’ of the other to something to reductive tropes, Matthews wants to keep the challenge of both addressing the concrete needs that people with complex disabilities present to care, whilst rupturing experiences of reducibility, romanticism and a sense of there being ‘one way’ of experiencing profound disability. There is a distinctly Levinansian flavour to this: maintaining both the ‘said’, that is, what is known about profound disability, with the ‘saying’, the active and continued presence of the person as an individual, experiencing the uniqueness of their own life.

Yet, in order to avoid paternalism, and to situate it further in its concrete lived reality, Matthews pulls in other thinkers – personalists such as Wojtyola and existentialists such as de Beauvoir and Sartre. Matthews shows the danger of dominating the other, ‘where the person with disability can easily be lost’ in interpretations of her experience (p. 141), as revealed in the theological and philosophical work on belonging by Wojtyla. But she also phrases this experience in the language of mystery, that which ‘applies to what cannot be conceived as a problem’ (Marcel, The Existential Background of Human Dignity, p. 82; 86, qt. in Matthews, p. 111), and explores the dignity of this personhood in the Southern African concept of ubuntu, as a ‘call for solidarity and freedom from oppression’ (p. 71). The multifaceted nature of this relational experience is, of course, what profound disability presents us with. There are myriad ways, Matthews reminds us, of experiencing being a person with a profound disability. It is through this nuanced engagement that Matthews raises clear and pointed challenges to modern disability discourse.

Throughout the book, Matthews keeps compassion’s paradoxical connection between conceptual complexity and practical care alive. Matthews writes in an engaged and fluid manner. The book is enjoyable to read, and accessible for anyone with a basic understanding of philosophy. The comparisons between thinkers were thought-provoking and served a wider purpose of providing a history of philosophy amid a normative ethical exchange. At points, in the pursuit of an integrated account, it would have been helpful to have clearer signposting in the subsections about how each section was connected to the aim of the chapter. Alongside the benefits of this sweeping integration of accounts, some of the detail and critical analysis of particular thinkers could benefit from further exploration, particularly in relation to Sartre, and Levinas. Developing the connection between theology and philosophy is perhaps a task for another book, or two, but it could be interesting to see this link explored further, particularly in relation to Wojtyola’s account.

This is certainly a book to return to. More importantly, it will cause the reader to re-perceive interactions with persons with profound disabilities with greater humility and attention. How is it, for instance, that viewing the profoundly disabled through their experience of a particular bodied characteristic affects the way one might extrapolate erroneously into more general views of agency, spiritual relation, and experiences of love? The issues of care, concepts of otherness and contemplative accounts of human experience that are evidenced in this book are nuanced. As such, it might even benefit from a follow up section, or as a second volume, to allow for the critical consideration of normative ways in which this framework could be applied to contemporary practice. The current discourse would certainly benefit on Matthews’ insights into this reality.

Matthews concludes with a call to embrace difference through celebrating the other-person-ness of response with profound disabilities. Drawing on the writings of Levinas, Buber and Marcel, amongst others, she suggests that a ‘new humanism’ may be required of us, one of responsibility, love, participation and justice (p. 174). This ‘authentic humanism’ requires us to take philosophy and spirituality seriously, and to meditate on the good that is received in relation to the other (p. 175). Matthews shows us how this is done when there is a shift in response from a recognition of common need and vulnerability, to an experience of celebration that comes from encountering the uniqueness of another person. This is an important development in the discourse on care. It also reveals the unique way in which Matthews can bring ethical insight into philosophical discourse that renews our understanding of a common humanity, and the gift that this relationality can bring, if we choose to seek it out.