chapter  8
18 Pages

“They are not human”: Hansen’s disease and medical responses to Ho-jo- Tamio


This essay centers on one of the most famous authors of a genre that came to be known as “leprosy literature,” Ho-jo-Tamio (real name Shichijo-Ko-ji).6

In addition to Ho-jo-’s work, I examine the reactions of medical professionals to it-that is, I examine the way in which some doctors sought to limit patient writing according to medical and legal meanings of the illness and with a consequent reduction of the patient to a life devoid of political or social engagement. I demonstrate that writing by sufferers and its meaning became one of grounds in which the social meaning of the illness and its representations were constructed. A narrow definition of patient experience was concomitant of the attempts

to limit possibilities for patient communities and treatment that Waka

Hirokawa traced in her contribution to this volume. Hirokawa has demonstrated the multiplicity of definitions of the disease in Japan, not only in epidemiological understandings of the illness but also in the fluidity of isolation policies targeting the illness.7 As relief organizations and doctors such as Takano Rokuro-and Mitsuda Kensuke campaigned against multiple etiologies of illness, or what Hirokawa has described as “folk epidemiology,” patient writing presented narratives that countered medical discourse and practices in ways that physicians sometimes saw as problematic.8 By providing alternative accounts of hospital experiences, such narratives opened a space that allowed for patient experiences outside of the frame proscribed by modern medical policies. Patient writing contested the impulse to reduce patient experience to a

clinical definition. Many doctors felt Ho-jo-’s writing inaccurately represented an institution they believed was inherently benevolent and served the greater national good. Certainly, Ho-jo-challenged the official idea of the hospital and its quarantined life. With his publications, medical professionals lost some of the power to define what it meant to have Hansen’s disease. Ho-jo-claimed for patients the power to represent their own experiences. In so doing, he resisted the “medical gaze” Michel Foucault described in The Birth of the Clinic that reduces patients to objects.9