I’m finishing up comments for my session at the conference, Disability History: Theory and Practice, in San Francisco at the end of this week.  My session is entitled “Theory and Method: Defining Disability Historically III.” The first paper is “What is a Disability? The Historical Example of Incompetency” by Kim Nielsen.  The other paper is “The Theory and Practice of Making Mad People’s History Public History,” by Geoffrey Reaume.  My instructions are that ” comments should focus on the larger implications theoretically and methodologically for the study of disability history, the connections of these papers with other areas of disability history and of the study of disability, and with other areas of historical study.” I’m feeling insecure partly because I don’t have a lot of time to do this (wish I’d received the papers sooner!) but also I’m realizing that I don’t know as much as I should about disability history and the difference between this and disability studies.  I’m saving more detailed, specific comments on the papers for the authors, but here’s what I think I will do:

Before I begin my comments, I think it’s important to say something about my background and how I came to the field of disability history. My training at Cornell was in the social history of medicine, which takes the patient’s voice as a starting point and places medical consumers at the center of analysis. I also was trained in women’s history, with a multicultural emphasis, so learned how medical theory reinforced gender norms, racial stereotypes, and social hierarchies. Yet I also learned that clients were not passive victims of medical opinion and social control. Instead, patients and their families played an active role in the clinic and at the bedside, arguing with doctors, shopping around for care that suited their needs and pocketbooks, accepting and ignoring expert advice as they saw fit. My work on adolescent medicine and student health has explored how teenagers and young adults shaped and legitimized these medical fields.

I didn’t really think of myself as a disability historian until a book chapter I wrote, entitled, “’I Was a Teenage Dwarf’:The Social Construction of ‘Normal’ Adolescent Growth and Development in Twentieth Century America” appeared in a list of recent articles on disability history compiled by Penny Richards in 2002. Not long after that, I was diagnosed with bipolar disorder. So, here I am, a historian with a disability doing disability history, but still consider myself a novice in this field. Nevertheless, I think my background and experience in the social history of medicine, women’s history, and the history of childhood and adolescence can provide some useful categories of analysis to the field of disability history.

Kim Nielsen’s paper explores the question what “counts” as disability. I would agree that this eludes easy definition and add that this is especially problematic when defining mental disability. I’ve noticed a disturbing trend in a series of recently published books such such as Mad, Bad and Sad: Women and the Mind Doctors by Lisa Appignanesi; or The Loss of Sadness: How Psychiatry Transformed Normal Sorrow into Depressive Disorder by Allan Horwitz and Jerome Wakefield; and Shyness: How Normal Behavior Became a Sickness by Chrisopher Lane, critique the ways in which the mental health professions and Big Pharma have conspired to turn “normal” emotions and feelings into diseases.

I must confess that I find these books both intriguing and troubling. On the one hand, they are pretty consistent with historical work that demonstrates how deviance from accepted social norms was often classified as mental illness – Kim uses the example of how feminism was construed as a form of “madness;” others have looked at homosexuality.

On the other hand, these works seem to assume that there are clear boundaries between “normal” emotions and “severe” mental illness.  Another danger is that critiques of this sort trivialize the lived experience of having a mental illness and/or romanticize mental illness as a source of “creativity” or “brilliance.”

Other issues that are coming through in the paper:  who can/should write the history of disability? Does having a disability make one more qualified? [this question comes up in women’s history as well — I would argue that men can write women’s history too, just like women can write history that is NOT about women] The reliability of psychiatric survivor stories reminds me of similar questions regarding slave narratives as sources.  The ways in which gender, race, class, age, and other factors shape the experience of disability.

Finally, I want to say something about how we need to move beyond the asylum for sources and an interpretive framework for what Geoffrey calls “mad people’s history.” Doing this will not be easy: institutions are convenient repositories. Access to patient records in the United States has become much more difficult because of the Health Insurance Privacy and Portability Act. However, I think it’s time that we stop allowing the history of institutionalization/deinstitutionalization drive the narrative of mad people’s history, much in the same way that African-American historians have moved beyond the institution of slavery in order to capture the diversity of experience of members of the African diaspora.

Okay, maybe I have something to say after all . . .