My first reaction to the Intolerant Bodies was: why so late? Autoimmunity is such an important topic in today’s biology and medicine––and, moreover, such a fascinating one–– that it is difficult to understand why, until this year, nobody had written a comprehensive history of this domain. Perhaps the answer is that we have waited for the uniquely qualified tandem Anderson-Mackay to write it. Ian Mackay, a veteran immunologist who worked with, among others, Macfarlane Burnett and Carleton Gajdusek, and is himself an important part of the history he tells. Before he started his impressive career as historian-cum-anthropologist-cum-expert on science and race cum-theoretician of post-colonial studies of science and medicine, Warwick Anderson was a medical student and intern who worked under Mackay and became fascinated by the intricacies of immunity and autoimmunity. Occasionally the integration of the voices of Mackay and Anderson is not entirely smooth, but their joint endeavor mostly works very well. Intolerant Bodies provides a well-written, well-informed, and much needed history of autoimmunity, enriched by theoretical reflections on nature of autoimmunity and detailed by an overview of clinical aspects of autoimmune diseases. The book investigates the important, and often-neglected role of “old fashioned” concepts such as idiosyncrasy and individual variation. But above all, Intolerant Bodies tells an important story, and tells it well.
One of the most stimulating aspects of Intolerant Bodies is the combination of first-rate historical analysis with a focus on patients’ experiences. Chapter 5 movingly describes such experiences, while in many other places the book shows how people with autoimmune conditions had drawn on rich metaphoric language linked with these pathologies to describe their feelings. It is less clear, however, to what extend the experiences of patients are specific to the problems produced by autoimmunity per se, and how much it reflects a felicitous nexus of language, metaphoric universe and medical descriptions of a condition. Many patients with chronic, incurable conditions learn that they will probably never get better, their disease follows a downhill trajectory, and the drugs that prolong their lives may also harm them. People with such conditions search for an answer to the questions “why me?” and “why now?” They attempt to find meaning in their suffering, and mobilize cognitive and emotional resources at their disposal to do it. If they happen to be writers or philosophers, such resources may include a capacity for a creative incorporation and subversion of medical language to describe the unique was the disease affects their bodies and minds.
Some medical topics are more apt than others to generate philosophical musings and to open new spaces for literary creativity. Autoimmunity, although not unique in this aspect, may be on the top of the list—or at least a serious contender for this place. It inspired thinkers such as Donna Haraway, Roberto Esposito, Jacques Derrida, and Peter Sloterdijk to mobilize “autoimmunity” as powerful trope in service of the theoretical views they wished to promote. The fact that thinkers who are very different from one another could use autoimmunity in support of her/his view displays the multi-functionality of immunological metaphors—and their power. Autoimmune metaphors are especially well adapted to provide rich “feeder layer” for the expression of embodied experiences of the chronically ill. People with autoimmune conditions may be especially “lucky” in this regard since they have at their disposal a rich symbolic vocabulary, able to express the ways their identity and self-perception was changed by their disease. For patients fascinated by words, lupus may be more rewarding in terms of self-understanding and creativity than, say, diabetes or a degenerative neurological condition. The same may be true for historians with a strong literary interest.
Warwick Anderson readily admits his love affair with the written word. In addition to his multiple scholarly personalities, he is also a published poet whose collection of poems, Hard Cases, Brief Lives, was shortlisted for the 2011 Mary Gilmore Award from the Association for Studies of Australian Literature. There is a respectable tradition of poets who draw their inspiration from their medical or scientific work: one can mention the German venereal disease specialist Gottfried Benn, the American pediatrician William Carlos Williams, the Australian general practitioner Peter Goldsworthy and, especially in the context of “intolerant bodies,” the Czech pathologist and immunologist, Miroslav Holub. Holub was a co-developer of “nude” mice (mice with an immunological defect that prevent them from rejecting grafts), an animal model that played a significant role in the immunological tolerance story. His poetry––translated into more than 30 languages––was to an important extent inspired by his scientific work. Studies of immune mechanisms seem to make a good match with the crafting of words. Interrogated about his poetry, Warwick Anderson explained that although his main professional identity is one of an historian of biology, medicine and public health, he has always considered himself a writer, first and foremost. Historical writing, he added, is just a part of his repertoire.
Thanks to a felicitous overlapping of scientific descriptions of a pathophysiological condition with symbolic vocabulary, autoimmunity is a great topic for a writer who uses the history of medicine as one of the mediums in which he expresses his creativity. An encounter between medical terminology and polysemic vocabulary laden with symbolic meanings can, nevertheless, produce different results in different times and places. In 1987, Paula Treichler eloquently argued that AIDS was an “epidemic of signification” that linked sex, blood, drugs and marginalized groups such as Haitian migrants to the US. These symbolic dimensions of AIDS undoubtedly exist today, too, but it was overshadowed in the 1990s by another aspect of this disease: its high prevalence and catastrophic effects in poor countries, especially the Sub-Saharan Africa. In the 21st century, AIDS is more readily associated with inequalities in health among countries and continents, the collapse of health systems in poor countries, and the consequences––positive and negative––of interventions of international organizations, NGOs and charities, than by the sex/ blood/ drugs nexus.
Cancer is another condition linked with powerful metaphors —the deviant “rogue” cell, the body’s “fifth column,” patients “devoured” by an internal foe, heroic fight against pitiless enemy. Cancer patients, as many “pathographies” written by people with the disease attest, frequently give meaning to suffering by copiously drawing on metaphors linked with malignant growths. Others––the best know example is Susan Sontag—strongly reject the notion of “disease as metaphor,” and, as Lochlain Jain put it, refuse to “live in diagnosis.” Others still use different registers to speak about their embodied experiences. In her book, Memoir of a Debulked Woman, the literary scholar Susan Gubar extensively relied on the multiple symbolic meanings of the term “debulking”—the technical expression that describes the elimination of cancer ridden organs— which she used to define how her experience with advanced ovarian cancer affected her inhabiting her sick body and her radically different ––“debulked”––view of herself. In an article she published a few years later in the New York Times, Gubar focused on a more prosaic aspect of her “debulking” surgery—a series of probable medical errors that produced long-term complications and greatly amplified her suffering. Without such errors, one may assume, her multilevel experience of a “debulked woman” might have been different—as might have been her use of this image.
Autoimmunity, to follow Levi-Strauss, is truly a bon à penser topic. Study of its history opens new vistas on the fluid boundaries between bodies, identities, cells, biochemical and genetic technologies, chronicity, pain, rejection, tolerance, weakness of the flesh and its fragile triumphs. On the other hand, an embarrassment of riches may be sometimes problematic. Writing about a topic that overflows with meanings, one should be aware of the risk of being carried away by a torrent of extremely seductive metaphors.
Ilana Löwy is Research Director at the CNRS-CERMES3. Her publications include A Woman’s Disease: A History of Cervical Cancer (Oxford, 2011) and Preventive Strikes: Women, Precancer, and Prophylactic Surgery (Johns Hopkins, 2009).