! CALIFORNIA STATE UNIVERSITY, NORTHRIDGE From the Medical to the Human Condition: The Emerging of Intellectual Disability as Citizenship and a Socio-cultural Identity A graduate project submitted in partial fulfillment of the requirements For the degree of Master of Social Work By Bahman Ghahremani May 2017 ! ! The graduate project of Bahman Ghahremani is approved: _______________________________________ __________ Dr. Wendy Ashley Date _______________________________________ ___________ Dr. Judith DeBonis Date _______________________________________ ___________ Dr. David McCarthy-Caplan, Chair Date California State University, Northridge ii ! ! Dedication This is dedicated to my parents, Kayvan and Nilo Ghahremani. iii ! ! Table of Contents Signature Page ii Dedication iii Abstract iv Introduction 1 Method 3 Discussion 5 References 20 ! ! iv! ! Abstract From the Medical to the Human Condition: The Emerging of Intellectual Disability as Citizenship and a Socio-cultural Identity By Bahman Ghahremani Master of Social Work In the literature on intellectual disability, there is a continuous assumption that persons with intellectual disability lack the capacity for autonomy and self-determination. Indeed, this assumption emerges in even those studies that are critical of the historic treatment of persons with intellectual disability. But as this literature has evolved, matured, and self- reflected, the agency of persons with intellectual disability has become recognized, and encouraged in the form of self-advocacy. Thus, the literature has had the consequence of transforming intellectual disability from a medical condition to a socio-cultural identity, deserving of all aspects of citizenship, which includes community belonging. In the light of this development, social work must respond by re-evaluating its own values and commitments, and adopt the perspective of those it seeks to serve. This would complement social work’s historic concern with socio-cultural identity, rights, and community belonging as its aim has been to serve and promote the well-being of the individual—as individuals understand themselves and their place of belonging. Accordingly, the persistent debates of community versus individual housing, and community integration versus individual needs, can be understood from the perspective of the intellectual disability as a socio-cultural identity. v! ! Introduction ! The history of intellectual disability has been a history of confining persons with intellectual disability, by category and/or institutions, as incapable. This belief in their incapacity has robbed them of their humanity, as recorded in American society’s reactions to and remedies for those we have invariably understood as morons, idiots, feebleminded, mentally retarded, and now, as intellectually disabled. Accordingly, the conception and treatment of intellectual disability are interrelated. The history of intellectual disability—usually labeled “mental retardation”—has been conceived not as a history of doers, but a history of done to. For those termed intellectually disabled, history is the recording of what has happened to them. It is the record of how others, those conceived as “intellectually able” or “mentally accelerated”, have thought about intellectual disability, and the ways they reacted to it as a social need, a social problem, a social threat—but never as socio-cultural community, capable of its own actions and reflections. Social work’s conceptual understanding of and response to has been interrelated. For example, the persisting debate on institutions or community living as service providers find their origins in the history of how intellectual disability has been understood: as people without the mental ability for autonomy. It is not a coincidence that the historiography of mental retardation, or intellectual disability, is a history whose subjects are not the agents, the agency belongs to the “abled”. This finds expression in social work’s continuous struggle with the issue of autonomy and independence for those with intellectual disability. This is rooted in the often ambiguousness understanding in the historiography of intellectual disability: what is the meaning of independence and 1 ! autonomy for those whose mental capacity—the means for achieving independence and autonomy—is deemed a disability? Answering these questions, and exploring the meaning of disability as a socio-cultural identity, new understanding of agency, dignity, independence, and autonomy can arise. Thus, the purpose of this work is to encourage social work to approach intellectual disability and those who live with intellectual disability as a socio-cultural concept and identity, and to promote community formation in forms of self-advocacy, such as training and residential governing. Such an approach would encourage individuals to create self-defined and evolving identities and self- understandings of community belonging. And this would enable social work to respond to the challenges—autonomy, community living, self-determination—faced by individuals living with intellectual disability according to this population’s self- understanding. 2 ! Method Analytic Approach This examination of intellectual disability, otherwise known as mental retardation, applies a historiographical approach to analysis to demonstrate that the persistent understanding of intellectual disability as lacking the capacity for autonomy and responsibility has influenced the very understanding of the history of intellectual disability. Through a systemic analysis of sociological, medical, anthropological, historical, and social work scholarship, this work will reveal how, over time, this misunderstanding has influenced the debate on intellectual disability according to the perspective of those writing the studies and not those studied. Whereas to reconsider autonomy and independence as understood by those living with intellectual disability, new possibility can rise for community formation, which would promote community inclusion and participation. Historiography If history is the writing of humanity’s thoughts and deeds, historiography is the reflective glance back on that record. Historiography is the critical and systematic study/analysis of the historiographical presentation of phenomena. Moreover, it encourages the observation of how a social concept or problem, such as the treatment of those living with intellectual disability, has been studied, with the hopes that by questioning previous assumptions, approaches to contemporary challenges can be improved in a way that develops social understanding and capacity of social services. For example, by observing how the Deaf 3 ! Community has been treated, first on society’s margins and later as a socio-cultural community, with its own language and cultural expressions. Furthermore, a historiographical approach compares current practices with the scholarly and socio- cultural developments of previous eras, which would enable contemporary scholars and social workers to critically examine current conditions, not as a given, but as human creations. This understanding of current phenomena as human creations can allow the opportunity to appreciate new possibilities of meeting the needs of those living with intellectual disability. 4 ! Discussion Intellectual Disability as a Social Threat: Colonial Era to Mid 20th Century. The various names for what we now understand as intellectual disability have their own genealogies and literary genres (McDonagh, 1991). Idiocy, for example, in different historical periods, has been understood as cultural, and sexual non-comformity, and as a social class and political dissent (McDonagh, 1991). The same can be said of “morons”, “feeble-minded”, “dunces”, etc (Kanner, 1964). These were names of social categories of persons without power or living in society’s margins. But in the nineteenth century, these various categories coalesced into one medical condition (Trent, 1994; McDonagh, 2008; Noll and Trent, 2004). Where scholars disagree is the treatment of such persons before intellectual disability became a medical concept and institutions/asylums became a societal response. Scholars who see intellectual disability as a purely socio-historical construction focus on the societal reactions prior and post emergence of institutions (Trent, 1994). The institution is the historical site, the demarcating line. These historians contend that from colonial times to the early 19th century, these who we now understand as intellectually disabled were not socially marginalized but socially integrated in the community. Their segregation began with asylums and institutions which offered custodial care as forms of social control. And indeed, well into the twentieth century, the focus of that care was to protect society from these individuals, and not the individuals from society. A counter perspective is that prior to institutionalization, the intellectually disabled were not socially integrated but socially ignored or abandoned. And that the 5 ! institutions deserve a more nuanced look. For example, Steven Noll argues that institutional care and confinement should not be viewed as interchangeable, and that care was not necessarily a disguise for confinement. Rather, care and confinement should be viewed as on a spectrum of institutions’ responses to those under its care. Noll shows that the American South’s creation of institutions and asylums for the intellectually disabled were racially segregated, which implies that some