ÒNormals, Crazies, Insiders, and OutsidersÓ: The Relevance of SueEstroffÕs Medical Anthropology to Disability Studies Diane R. Wiener Abstract: This essay explores the promising interdisciplinary connections between Disability Studies and Medical Anthropology by examining the work of long-time ethnographer and activist Sue Estroff in the context of a Disability Studies perspective and philosophy. The author provides an array of examples of how EstroffÕs historical, and more recent scholarship, is relevant to Disability Studies praxis today, and suggests that Medical Anthropology as a field would benefit from utilizing a Disability Studies orientation in its own scholarship and practices. Key Words: medical anthropology, psychiatric survivor movement, interdisciplinary First, a note of appreciation. Sue EstroffÕs work is methodologically and theoretically indispensable to my study of psychiatric discourse, womenÕs first person narratives of Òmental illness,Ó and representations of female ÒmadnessÓ in mainstream Hollywood cinema. I am grateful to Ana Ortiz and Mark Nichter of the University of Arizona Department of Anthropology for introducing me to EstroffÕs writings. Second, the sharing of a compelling citation Ð employed here as part cogitative fulcrum and part assertive plea Ð from feminist philosopher Andrea Nicki (2001). While I differ from Nicki in my views on Òthe mind,Ó Òtruth,Ó and Òmental illness,Ó her articleÕs concluding words are striking, and help to situate my discussion. She remarks: ÒFeminist theory of physical disability focuses on societyÕs oppression of the body, of the alternate bodily states found in the physically disabled. Similarly, feminist theory of psychiatric disability concerns the oppression of the mind by a society that rejects and despises the alternate mental states found in the psychiatrically disabled. The history of Western thought has not truly been about the glorification of the mind. True appreciation will come when there is no more oppressive talk of some mental island called madness to which one in illness goes, no more morbid romanticizing of offshoots of oppression and abuse Ð of Òmad starving artistsÓ Ð or scientific mystification of fettered minds. Let there be no more beliefs that partition the complex wheel of the mind or that enforce the isolation of those suffering from oppression and mental illnessÓ (p. 100). NickiÕs phrasing seems to naturalize the terms and concepts Òmental illness,Ó Òthe mind,Ó and Òtruth,Ó as if they are able to be described as stable categories with persistent and clear cultural meanings. In contrast, I believe these terms and concepts are contested, and cannot be readily interpreted through language, as their meanings depend on the context and are thus not merely transparent. I cite NickiÕs work here because I appreciate her attitude toward refuting the romanticizing of ÒmadnessÓ and Òmad starving artists,Ó and her questioning of what she terms Òscientific mystification of fettered minds.Ó Her apparent intention to undo the societal Òpartition[ing]Ó that accompanies references to Òthe mindÓ is crucial to discussions of Disability Studies in the context of Medical Anthropology and vice versa. For thirty years, Medical Anthropologist Sue EstroffÕs scholarship has accentuated the relationships between psychiatric consumer/survivor/ex-patient or Òc/s/xÓ identity formation, social constructions of emotional difference, and public policy concerning mental health and emotional disability. Her assertion that Òour psychiatric belief and treatment systems and our interactions as community members can contribute not only to the amelioration of patienthood but to its perpetuationÓ (1981, p. 174) directly relates to two of Disability StudiesÕ primary objectives: to improve the lives of disabled people; and, as advocate Simi Linton puts it, to Òserve both academic discourse and social changeÓ ( 1998, p. 1). Among our multiple projects and varied stances, promoters of Disability Studies encourage individuals and groups who self-identify as disabled to self-empower. This is partly accomplished by de-linking emotional, cognitive, and corporeal identities of ÒdifferenceÓ from explanatory models that individualize ÒillnessÓ Ð and by moving away from the often disturbing advancements of medicalization and ÒpatientÓ dependency models Ð to critique and deconstruct power structures and combat stigmatization. For these reasons, I believe that EstroffÕs stance regarding ÒpatienthoodÓ and its ÒameliorationÓ versus ÒperpetuationÓ within capitalist society may be used to build promising bridges between Medical Anthropology and Disability Studies. In her piloting book Claiming Disability, Linton remarks: ÒA disability studies perspective adds a critical dimension to thinking about issues such as autonomy, competence, wholeness, independence/dependence, health, physical appearance, aesthetics, community, and notions of progress and perfection Ð issues that pervade every aspect of the civic and pedagogic culture... Scholarship in the field addresses such fundamental ideas as who is considered a burden and who a resource, who is expendable and who is esteemed, who should engage in the activities that might lead to reproduction and who should not, and, if reproduction is not the aim, who can engage in erotic pleasures and who should notÓ (p. 118). Linton rightly insisted Òthe voice of disabled people should be present in both disability studies and applied approaches to disabled people, but the voice should take different form in eachÓ (p. 141). Disabled individuals must be included on curriculum committees, welcomed as leaders in the rehabilitation movement and the applied fields that affect their lives, and respectfully incorporated Ð rather than shunned, ignored, made exotic, or tokenized Ð within all societal spheres. As many Disability Studies advocates maintain, images, stories, and other representations of the disabled fashioned by disabled people must be centrally featured in all domains that pertain to disabled peopleÕs experience. The presence of these representations ought to also help the non-disabled learn about and gain sensitivity to the disabled experience. The mental health industry in particular needs to increasingly acknowledge, respect, and make changes based upon the powerful contributions to social justice and the critiques of the psychiatric status quo offered by members of the Disability Rights movement and the psychiatric survivor movement. Thankfully, it appears that these movements may indeed be influencing the worlds of mainstream rehabilitation and treatment. In an article published in the Spring 2001 issue of the Psychiatric Rehabilitation Journal, progressive social worker Priscilla Ridgway remarks, ÒTo understand and facilitate processes of resilience and recovery, we must end the silence imposed on people with psychiatric disabilities, attend much more carefully to their personal and collective voices, and value and honor their storiesÓ (p. 341). The trajectory of Sue EstroffÕs writing, theorizing, and advocacy was brought to public attention in the late 1970s, when she completed her dissertation on the experiences of outpatient clients in a community mental health program in Madison, Wisconsin. This work was later published as Making it Crazy: An Ethnography of Psychiatric Clients in an American Community (1981). One of its chapter headings is the source of the quote in my essayÕs title. In Making it Crazy, Estroff sought to fairly (and as accurately as possible) depict the complicated and interactive positions and perspectives of an outpatient mental health programÕs staff and clients, rather than demonizing the former or patronizing the latter, as some of her professional predecessors in medical anthropology and sociology had understandably been accused of doing. The descriptive cultural study of psychiatric survivors in the wake of de-institutionalization was radical for its time. As Disability Studies emerged, in part, from the Disability Rights movement, the c/s/x, anti- psychiatry, and Disability Rights movements simultaneously influenced EstroffÕs early work, and continue to influence it today. In her introduction to Making it Crazy, she explains some of her motivation to do the project as follows: ÒIf Goffman and Kesey can do it in an institution, someone ought to try it outsideÓ (( p. 3). As a cultural artifact, the study may be read as a critical commentary on the era of post de-institutionalization. Years later, Estroff returned to the Madison field site for a follow-up study, and subsequently published Identity, Disability, and Schizophrenia: The Problem of Chronicity (1993), a piece well- known within medical anthropology for its continued attention to her theory of role engulfment, a conceptual framework for explaining the differences between and reasoning behind what she terms ÒI haveÓ versus ÒI amÓ illnesses. According to her distinctions, one does not have schizophrenia, but is (labeled) a schizophrenic. One is not an arthritic, but has arthritis Ð although one could say that he Òfeels arthritic,Ó meaning that a bout with arthritis is in full swing. Per Estroff, believing that one ÒhasÓ or ÒisÓ something, and the linguistic conventions that label and express these states of being, are strongly influenced by the length of time one experiences symptoms, pain, difference, and so on. Thus, chronicity makes it Òless and less possible to separate oneÕs self from the stubborn presence of the impairment and resulting altered level of functioningÓ ( 1993, p. 258-9). EstroffÕs Òsociocultural understanding of the process of chronicityÓ (p. 274) is aimed to Òreclaim medical anthropology from biomedicine,Ó (p. 277) but this approach Òdoes not meanÉ that one rejects the call for salience in the realm of healing and sufferingÓ (ibid.). The connections Estroff draws between disabled bodies and disabled identities may have resonance for those Disability Studies advocates who seek to simultaneously honor and complicate the identity politics around disability and difference while acknowledging that disabling moments materially happen to disabled and non-disabled people. As Laurence Kirmayer (2000) helpfully summarizes, ÒMedical anthropology is concerned with the interaction of social and personal constructions of illness meaningÓ (p.174). EstroffÕs attention to the daily practicalities of mental health has influenced both the tone and style of medical anthropology scholarship. In the introduction to their foundational anthology Disability and Culture (1995), anthropologists Benedicte Ingstad and Susan Reynolds Whyte remark, ÒSue Estroff finds it characteristic of anthropology to show how people identified as deviant Ôadopted, elaborated, and/or rejected their deviant identities while interacting with the culturally defined values and actions of othersÕ [Making it Crazy, p. 211]. She examines the cultural values and practices of American society toward ÔcrazyÕ people and the way those so defined manipulate and use the dominant valuesÓ (p. 19). According to Estroff, there are numerous ways that people labeled Òmentally illÓ strategically utilize the idea of their Òdeviant identitiesÓ to their advantage, and they may embrace such identities as meaningful and complex, rather than just imagining these identities as wholly problematic or as merely disruptive and difficult. Estroff asserts that ÒcrazinessÓ may be a choice for some and can become an ongoing performance of identity. She explains there are Òrules for making it crazy,Ó particularly if one is compelled to seek what she calls Òcareer optionsÓ as a way of negotiating life within the realms of mainstream clinical psychiatry, and within a larger society that punishes people with stigmatic consequences for doing what they are in some ways set up to do. In Making it Crazy, Estroff lists the specific ÒRules for Making it CrazyÓ (pp. 189-190), which are assembled Òto clarify the clientsÕ perspective and working dynamicsÓ (p. 189). Estroff notes that there are both pros and cons, and what she terms Òcomfort and agony,Ó in the choice of Òmaking it crazyÓ (p. 190). Before listing the 12 Òrules,Ó she remarks: ÒThe real cultural craziness here is that not only do we describe these persons as pathologically dependent but we contribute to their dependencies. Not only do we view them as un-integrated within the community but we isolate them by constantly reminding them of their incompetence and by introducing them to peers [in treatment programs] with whom they may be more comfortable. We provide professionals to help these persons, as [our] society seem[s] to prefer to pay others to deal with them and thereby undermine any motivation that community members or other clients might have to participate in the caring and treatment process... We negatively value these persons, collectively and as individuals, for their differentness and their dependencies, but we leave them little chance to give us anything except Ôgetting betterÕ (which means being more like us)Ó (pp. 188-189). Importantly, after listing the 12 Òrules,Ó Estroff provides four Òcriteria for making it without crazinessÓ (pp. 190-191), to acknowledge that some mental health clients Òmade it out of the systemÓ or Òreconstruct[ed] a well selfÓ (pp. 191-191), despite what she describes as the Òfailures, both of persons and of the sociocultural system within which they operateÓ (p. 190). I believe that the ÒsystemÓ to which she is referring here is the American mental health system of the mid- to late 1970s. Unfortunately, in my estimation, our current mental health system Ð including many (but not all) of its policies, administrators, and practitioners Ð is differently (if not more) problematic than it was during the 1970s. Estroff points out that engaging with ÒcrazinessÓ as a disabled ÒidentityÓ or ÒroleÓ is often Òthe means by which [mental health clients] Ômake itÕ or surviveÓ in a fraught system and beyond ( 1981, p. 38). She notes that many psychiatrically diagnosed individuals pursue entitlements benefits based upon their strategic employment of a Òmentally illÓ identity (Estroff, et. al., 1997). Attempting to use a stigmatized identity to ones advantage and finding other ways to strategically survive in a society that stigmatizes those labeled Òmentally illÓ are complicated choices, and there may be serious ÒcostsÓ to those who accept or who negotiate stigmatizing labels in order to claim financial benefits. However, these choices can be some among many ways of managing within an unsettling society whose hardy and ubiquitous mental health industry aims to ÒserveÓ but often simultaneously harms individuals who are labeled Òmentally illÓ by ÒexpertsÓ in that industry. Instead of negatively judging people for making complex choices in a laborious system, Estroff is aware of Ð and advises that others should become more aware of Ð the myriad facets of adapting, working with, denying, combating, or embracing a ÒdeviantÓ identity or role. She remarks that Òwe must remind ourselves that we are trying to understand persons who are absorbed in the creation of day-to-day living that, though negatively valued and often painful, is nonetheless rewardingÓ ( 1981, p. 198). This observation about emotionally disabled individuals mirrors one among many Disability Studies approaches toward reading triumph narratives Ð disabled people, psychiatric survivors among them, do not necessarily or only imagine themselves as disempowered victims of oppression who seek to heroically overcome obstacles, but are individuals with abundant identities, living with nuances and in ways that are agentive. EstroffÕs commitment to respecting the rights of consumers/survivors/ex-patients and the c/s/x movement overall promotes a heightened awareness of the obligation to go beyond condescending care and well-meaning empathy to valuing the emotionally disabled within local communities and professional rehabilitative circles, and in not disrespecting individuals and groups via unethical ethnographic projects (see 1999). As someone trained in cultural anthropology, Estroff is extremely concerned with the connections between the realms of the ÒmacroÓ and the Òmicro,Ó and she thus engages cultural patterns while being mindful of individual uniqueness. Estroff believes in an anthropological enterprise that goes beyond studying people in context to pragmatically serve them. She is one of those rare activist scholars who actually puts into practice the idea of Ògiving back to the community,Ó an approach that sometimes seems like a promise or sentimental avowal on so many scholarly lips. Among EstroffÕs major concerns are the relationships between and health care seeking patterns among chronic psychiatric patients, and the ways these crucial life facets are forged in part by the mental health industryÕs resource allocations and professional players, and larger social policies. She asserts, Òsocial welfare and health policies codify cultural ideas about identity, illness, and productive activity. These are then expressed in mental health care systems that Ð in the U.S. in particular Ð facilitate, indeed operate a political economy of disability construction among severely mentally ill personsÓ ( 1993, p. 251). The premise of Òdisability constructionÓ is familiar to many disabled people, and has sometimes been used by Disability Studies scholars to advance a politicized social critique. While Òseverely mentally illÓ may not be a welcome descriptor for some self- identified psychiatric survivors, EstroffÕs definition of disability construction could prove useful for forwarding Disability Studies and c/s/x critiques. I interpret Estroff as envisioning a politically engaged mental health care system that is effective but that does not have its own perpetuation as a primary goal. She likewise does not want to foster a system that hinges upon the creation of patient dependencies. In her extensive work on c/s/x subjectivities and narratives, it is clear that she believes psychiatric survivors are experts within the system and ought to have the opportunity to run some things for themselves, despite the frequent and ongoing resistance to this stance on the part of many mental health administrators and professionals (see 2004). Importantly, psychiatric survivors have not waited for opportunities to be handed to them but have created opportunities for themselves through activist means. The international clubhouse movement begun by New York CityÕs Fountain House, a rehabilitative location mostly governed by c/s/x individuals for c/s/x individuals, and other patient-led advocacy efforts have blossomed and grown and will hopefully continue to flourish in the future. Of course, there is enormous variation in what psychiatric survivors want and need, not to mention the diversity in the c/s/x world regarding political orientations, beliefs, perceptions, and feelings about being (or being labeled) Òmentally ill.Ó In the absence of a monolithic leftist patient-led revolution that some would welcome but others would not applaud, and given ongoing capitalist realities, Estroff works to critique the mental health system from within. Her efforts invoke a savvy combination of epidemiology, patientsÕ rights, expert attitudes, and public health policies, and she provides insights into how the mental health system Ð alarmingly interwoven with the prison industrial complex Ð could and should change, with an awareness that merely good intentions wonÕt get us far, and there must be a profit motive behind any systemic alterations. Disability Studies scholars and activists who are attentive to emotional and cognitive disabilities issues might benefit from surveying EstroffÕs reflections on the social and political-economic underpinnings of consumer/survivor/ex-patient identity formation, the pros and cons of narrative constructions of mentally ill selves, the anthropological incorporation of illness narratives and life stories, and activist anthropologyÕs potential impact on policy making. Although modern ethnographic work cannot be utterly disentangled from its deeply fraught socio- political history, a self-reflexive Medical Anthropology approach that is accomplished with a Disability Studies stance at its core, and a Disability Studies practice that is influenced by an anthropological orientation like EstroffÕs, could each offer a great deal to discussions and understandings of the connections between gender, class, sexuality, ethnicity, nation, and race in relation to disability, difference, and deviance, particularly in the scholarly and ÒtreatmentÓ arenas around, and the daily living of, those labeled Ð and/or self-identified Ð as Òmentally ill.Ó Diane Wiener is currently completing her doctorate in Comparative Cultural and Literary Studies at the University of Arizona. Her dissertation engages a Disability Studies stance to critically compare female psychiatric survivorsÕ written autobiographies with cinematic representations of Òmentally illÓ women in the United States. References Estroff, S. E. (1981). Making it crazy: An ethnography of psychiatric clients in an American community. Berkeley: University of California Press. _____. (1993). Identity, disability, and schizophrenia: The problem of chronicity. In S. Lindenbaum & M. Lock (Eds.), Knowledge, power, and practice: The anthropology of medicine and everyday life (pp. 247-286). Berkeley: University of California Press. _____. (1999). The gaze of scholars and subjects: Roles, relationships, and obligations in ethnographic research. In N. M. P. King & J. Stein (Eds.), Beyond Regulations: Ethics in Human Subjects Research (pp. 72-80). Chapel Hill: University of North Carolina Press. _____. (2004). Subject/subjectivities in dispute: The poetics, politics, and performance of first- person narratives of people with schizophrenia. In J. H. Jenkins & R. J. Barrett (Eds.), Schizophrenia, culture, and subjectivity: The edge of experience (pp. 282-302). Cambridge: Cambridge University Press. Estroff, S. E., Patrick, D. L., Zimmer, C., & Lachicotte, W. (1997). Pathways to disability income among persons with severe, persistent psychiatric disorders. Milbank Quarterly, 75, 495-532. Kirmayer, L. J. (2000). Broken narratives: Clinical encounters and the poetics of illness experience. In C. Mattingly & L. C. Garro (Eds.), Narrative and the cultural construction of illness and healing (pp. 153-180). Berkeley: University of California Press. Linton, S. (1998). Claiming disability: Knowledge and identity. New York and London: New York University Press. Nicki, A. (2001). The abused mind: Feminist theory, psychiatric disability, and trauma. Hypatia, 16, 80-104. Ridgway, P. (2001). Restorying psychiatric disability: Learning from first person recovery narratives. Psychiatric Rehabilitation Journal, 24, 335-343. Whyte, S. R., & Ingstad, B. (1995). Disability and culture: An overview. In B. Ingstad and S. R. Whyte (Eds.), Disability and Culture (pp. 3-32). Berkeley: University of California Press.