Disability and Mothering: Liminal Spaces of Embodied Knowledge

7. Refusing Diagnosis: Mother-Daughter Agency in Confronting Psychiatric Rhetoric

98 7 Refusing Diagnosis Mother-Daughter Agency in Confronting Psychiatric Rhetoric A b b y W i l k e r s o n My daughter Lauren has a sizable cynical streak, but there are injustices against herself or others that she will not tolerate, even when the odds are stacked against her.1 In her adolescence, her talent for art extended to her own self-presentation, which was unique enough that people took notice. And if a mother is any judge, she’s beautiful, even though the pursuit of beauty has never been her prime operating concern in life. The story of Lauren’s psychiatric hospitalization confirms that a seventeen-year-old girl who is attractive yet apparently uninterested in being pretty can still get attention for her looks. It also suggests that there may be times when a mother concerned with her daughter’s mental health may need to refuse diagnosis (not a diagnosis, but any diagnosis) in order to foster that health. 1. I am indebted to Cynthia Lewiecki-Wilson for insightful comments that greatly benefited this article. I also thank listeners at the Radical Philosophy Association, University of Minnesota Bioethics Seminar Series, Temple University Philosophy Department, and the Washington Ethical Society for thoughtful responses to early versions of this paper, as well as the Artivism group of Washington, DC (particularly Urooj Arshad, Margo Kelly, Cindy Newcomer, and Grace Poore), Melissa Burchard, Julie Elman, Cayo Gamber, Lisa Heldke, Robin Meader, Peg O’Connor, Pam Presser, Karen Sosnoski, and Dan Williamson. Both Lauren and my partner, Pat McGann, made many useful suggestions that benefited the paper. Most of all, I thank Lauren for her insight and for her courage, as well as her generosity in permitting me to tell my version of this story. Refusing Diagnosis • 99 Disability studies, scholarship on illness narratives and medical rhetoric , and gender studies can all be enriched by exploring the significance of refusing diagnosis. Mothers of children targeted for psychiatric treatment face the challenge of assessing the purposes, motivations, and potential consequences of interventions. We hope a proposed remedy will relieve our children’s suffering (if indeed they are suffering), remove obstacles to their flourishing, and ultimately foster their agency in the world (Ruddick 1995). Yet a remedy can also participate in, or even constitute, regimes of normalization that privilege some minds and bodies, some ways of functioning, being, and appearing, while stigmatizing others that cause less suffering than proposed interventions, or may even be positive and healthy variations. Psychiatry is one of the chief enforcers of “compulsory able-bodiedness,” a norm overlaid at the same time with social ideologies of race, class, and gender, along with sexuality (as invoked by the term’s echoing of Adrienne Rich’s notion of compulsory heterosexuality [McRuer 2006, 1, 6]).2 Mothers, entrusted with the cultural role of prime socialization agent for their children, are often conscripted into enforcing compulsory ablebodiedness even though it frequently does not serve their children—or themselves—well. Advocating for a child’s interests may sometimes mean rejecting treatment in order to resist the compulsory able-bodiedness that can harm a child. Adolescent psychiatry robs adolescents of agency by constructing them as subjects who generally cannot be trusted to represent their own experiences and interests with authority, especially when their perceptions and behavior are seen to violate social boundaries such as those structuring compulsory able-bodiedness. When the rules of psychiatric rhetoric prevent mothers from participating along with doctors in constructing meanings regarding our children, we are denied agency as well. Medical rhetoric shapes knowledge, the meanings that can be shared among doctor, patient, and parent, defining what can be expressed 2. I use the term “compulsory able-bodiedness” to encompass norms of mental/emotional ability—an appropriate framing given the hegemonic medical model of mental illness as chemical imbalance leading to brain dysfunction. 100 • Abby Wilkerson and acted upon, what is relevant and irrelevant. When crucial knowledge becomes inexpressible under these terms, saying no to psychiatric discourse and the compulsory able-bodiedness underlying it may become the most coherent option and the best exercise of agency for a parent on an adolescent’s behalf. The case study considered here took place in the late 1990s, reflecting events that continue to shape adolescent psychiatry. Julie Passanante Elman (2008, 200) argues that the 1990s, designated “The Decade of the Brain” by presidential proclamation, witnessed the development of a discourse...