Mad pride and the medical model.
Article Type: Viewpoint essay
Subject: Mentally ill (Social aspects)
Stigma (Social psychology)
Author: Jost, Alison
Pub Date: 07/01/2009
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2009 Hastings Center ISSN: 0093-0334
Issue: Date: July-August, 2009 Source Volume: 39 Source Issue: 4
Topic: Event Code: 290 Public affairs
Geographic: Geographic Scope: New York Geographic Code: 1U2NY New York
Accession Number: 220561137
Full Text: There is much to like about most "pride"-oriented social movements. Black pride? Obama wouldn't be president without it. Gay pride? It will rightly lead to the legalization of marriage for all. But a new social movement, depicted in a recent Newsweek article, should give social-movement-supporters serious pause. "Mad Pride," as it is called, is "a budding grassroots movement, where people who have been defined as mentally ill reframe their conditions and celebrate unusual (some call them 'spectacular') ways of processing information and emotion." The article follows Will Hall, a diagnosed schizophrenic, whose troubled interactions with the medical establishment have led him to reject traditional conceptions of mental illness.

Hall's efforts, formalized by his leadership in the New York-based group the Icarus Project, are not just about fighting the stigma of mental illness. Ending stigma is one aim of

Hall's group, but not its primary aim. Instead, Hall and others claim that illnesses like schizophrenia and bipolar disorder need not--indeed, should not--be framed as illnesses at all. According to the Icarus Project's Web site, they are "mad gifts to be cultivated and taken care of, rather than diseases or disorders to be eliminated or suppressed."

Hall's group raises important questions about the psychiatric establishment, the treatment of the mentally ill, and the rising use of medication as an automatic, go-to remedy. The ever-growing multitude of psychiatric disorders should give us pause. Complaints by some that the psychiatric model reduces people to being "essentially diseased or disordered" ought to be taken seriously. But we can ask legitimate questions about the blurriness of "normal" and "disordered" behaviors without broadly denouncing medical models of illness. And diagnosing mental illnesses does not automatically mean that the people who have them have been reduced to a diagnosis--that they are nothing more than an illness. People like Kay Redfield Jameson, author of An Unquiet Mind: A Memoir of Moods and Madness, offer more nuanced criticisms of mental illness and psychiatry. They seek to end stigma, raise awareness, explore experiences, and encourage conversation about living with mental illness. These efforts are dignified and important undertakings.

At first glance, it seems easy to draw parallels between movements like Hall's and those within various disability communities. The Newsweek article does just this, comparing the Mad Pride movement to the resistance of certain deaf communities to "cures" like cochlear implants. In the bioethics literature, Adrienne Asch and others argue convincingly that disabilities are not necessarily bad; rather, they become bad only because able-bodied people see them that way.

But in fact, the parallels between the disability and the mad pride movements are limited. It is true that one reason living with a mental illness is difficult is that others stigmatize you. But stigma is not the only thing that makes a mental illness an illness. Most mental illnesses, for most people, are inherently negative. They demoralize people. They halt lives, figuratively and literally.

Bipolar disorder could be thought to have gift-like elements, since periods of mania can be characterized by a certain brilliance or creativity, but many other illnesses--like unipolar depression, severe anxiety, OCD, and eating disorders--would hardly be described as gifts by most sufferers. In 2005 (the most recent year for which statistics are available), over thirty-two thousand Americans committed suicide, making it the fourth leading cause of death for people aged ten to sixty-four, and mental illnesses are the likely cause of the vast majority of cases. Anorexia, the deadliest of mental illnesses, claims between 18 and 20 percent of all its sufferers.

No matter how destigmatized our society becomes, mental illnesses will always cause suffering. They are not simply different ways of processing information or emotion; they are disorders in the capacities for processing information or emotion. It's one thing, then, to say that mental illnesses should be respected for how they shape and sometimes enrich the lives and personalities of the people who suffer them, and quite another to say that mental illnesses should be embraced by those who suffer them and by the community at large.

Alison Jost is a research assistant at the Yale Interdisciplinary Center for Bioethics, and formerly a research assistant at The Hastings Center.
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