The Emerging of Intellectual Disability As Citizenship and a Socio-Cultural Identity

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

Bahman Ghahremani

May 2017

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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

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Dedication

This is dedicated to my parents, Kayvan and Nilo Ghahremani.

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Table of Contents

Signature Page ii

Dedication iii

Abstract iv

Introduction 1

Method 3

Discussion 5

References 20

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Abstract

From the Medical to the Human Condition: The Emerging of Intellectual Disability as Citizenship and a Socio-cultural Identity

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.

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.

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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

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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.

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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 humanity was understood to exist in the residents, and that the custodians saw the intellectually disabled as similar to themselves, although through racist prisms and that the intellectually disabled were not viewed as a monolithic, immobile form.

These debates are not academic but are pertinent to the continuing debates— institutions versus community support; what is community integration?—on the nature of the care for those living with intellectual disability. Although many institutions and asylums deserve their notorious reputations, scholars often ignore that their prior living condition may have been worse (Trent, 1994). The institutions can be reconsidered not as an imposition on community, but as the community’s own response to a genuine problem: how to care for those who may not be able to care for themselves? And what is the meaning of and how do such persons with genuine needs live a life of independence, autonomy, self-determination? By making the history of persons with intellectual disability, an institutional history, it becomes a history not of the intellectually disabled— of how they came to create and record something that was of their own—but a history of the mentally accelerated and their reaction to those they termed as intellectually disabled.

This view of the intellectual disabled as lacking initiative to create their own culture and history persists to this day.

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Those with intellectual disability were deemed as a threat to America’s economic growth in the nineteenth century, and to its racial hygiene in the twentieth century. These themes are, in fact, reflected in the literature on intellectual disability from the nineteenth up to mid-twentieth century. This literature does not have the self-awareness of a genre; it sees itself as a response to a mundane but urgent phenomenon, the same way weather reports are viewed as mundane records of often-urgent natural phenomenon. In the literature, there is no evolution but a consolidation of argument.

The concept of intellectual disability—earlier termed as “feeblemindedness, imbecile, moron, idiocy”, to the much later medical term of “mental retardation”— emerged with the growth of the state and its social problem solving apparatus in the 19th century. As James W. Trent, Jr., points out, the very notion of care/concern and control coincides with the rise of the modern state’s policing powers, which created the social problem of intellectual disability that it set out to solve. Accordingly, intellectual disability became a social construction to solve (Previously, before the Civil War area and its concomitant social problems, intellectual disability was viewed as a local problem, a condition of concern to a family or local community, or perhaps even as simple eccentricity) (Trent, 1994).

From the social construction of intellectual disability came about the medical model of intellectual disability as a “mental retardation.” According to this conceptualization, intellectual disability inevitably became associated with the diseases, biological and social, of the era, and accordingly had to be treated with institutionalization. Institutionalization changed, though not at first according to a progressive development of better and better treatment, but according to available

7 ! resources, depending on the broader social context. For example, during The Great

Depression, when public resources were scarce, institutionalization became insular and inroads into community integration dwindled. In the nineteen fifties, with its emphasis on social order, conformity, institutionalization resembled incarceration (Trent, 1994).

The Intellectual Disabled as a Social Victim: 1950’s

The first shift in the literature began in the 1950s. The stigma (and its concomitant blame) of having an intellectually disabled family member persisted. But a new change in public thinking occurred in which society was now deemed the treat and those with intellectual disability as in need of protection, a reversal of previous attitudes. This is often traced to the relaxing of the medical requirements during World War II which showed that people with intellectual disability could adjust to and indeed excel at military life and combat. This, in turn, undermined some societal assumptions about the capabilities of intellectually disabled (Gelb, 2004). Moreover, the post-War boom gave rise to citizen participation, whether in the form of the Civil Rights Movements or parent groups civic participation, boosted by middle class mobility. As parent advocacy groups spread, stigma was challenged. Roy Rogers, the famous actor, and JFK acknowledged family members who had intellectual disability (and yet, Erik Erikson, the famous psychoanalyst, remained silent about the intellectual disability of one of his children).

Parental groups created special schools, and community center began a new location of care, a way from institutions (Jones, 2004).

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Rights of Intellectually Disabled: 1960’s

The social shift in re-examining the relationship between society and the intellectually disabled, from a threat to a need for protection, consolidated and an inward- gaze in the literature emerged. In a prescient book, Leo Kanner (Kanner, 1964) examines

“the History of the Care and Study of the Mentally Retarded.” His focus is how mental retardation has been understood in different historical periods. He attributes the rise of interest in mental retardation to the American and French Revolution’s unleashed zeal for straightening the crooked timber of humanity. Kanner also attributes this interest to the

Enlightenment’s insatiable quest for knowledge. Thus, by historically situating intellectual disability, contemporary responses could also be historically situated and questioned and re-examined.

Similarly, Richard A. Kurtz’s sociological study, places social meaning “only as reference to a particular social system” (Kurtz, 1970) and he conceptualizes intellectual disability as a social problem but not as a threat, but as problems on par with social problems facing ghettos and Native American reservations (This understanding of intellectual disability as a socio-cultural problem akin to American ethnic civil rights causes would eventually develop into a socio-cultural identity). Kurtz writes that “a social history of the United States could be written by tracing the rise and fall of interest in particular social problems over time, especially if attention is given to changing perceptions, definitions, reactions, and proposed solutions…. At the same time, the changing system of social norms would reflect the particular means developed to handle the problem and those who are defined as part of it at that point in time” (Kurtz, 1970).

This redefinition of intellectual disability as a social problem, but one in which the

9 ! intellectually disabled are the victim, not the perpetrator, develops another shift in the literature. One sees the emergence of the intellectual disabled as a social entity, but as a socio-cultural being endowed with rights, though not yet responsibility. His focus is on community, family, school, and residential institutions—but not the individual.

Intellectual Disability as a Socio-Cultural Community: 1970’s

Daryl Paul Evans’ The Lives of Mentally Retarded People (Evans, 1983) studies the impact of institutions on individuals. Although these individuals are quoted and speak for themselves, their response is about the impact of other people’s actions (Evans, 1983).

In Abandoned to Their Fate, Ferguson states that “[M]ental retardation history is reflective, rather than formative, of the large course of events in American society. What happened to mentally retarded people at the hands of the state during any specific era had usually been tried before, on other, larger groups of people, and with much more public attention” (Ferguson, 1994).

The hopeful beginnings of a change in the understanding of intellectual disability may be evident in R.C. Scheerenberger’s A History of Mental Retardation

(Scheerenberger, 1983). He discusses societal attitudes to intellectual history beginning in pre-history and ending in the America, nineteen fifty-nine (Scheerenberger, 1983). In a subsequent edition, the subtitle “A Quarter Century of Promise” has been added. Here,

Scheerenberger eschews history of science, and focuses on the recent developments from the sixties to the eighties. But interestingly, here he added a section on the “rights of

10 ! mentally retarded persons” which included the right to self-advocacy (Scheerenberger,

1987).

Therefore, starting in the sixties, with the rise and empowerment of various social groups and social movements, those living with intellectual disability were equally empowered. There emerged the notion of the “profession and the potential citizenship”, coupled with the rise of the parent’s movement. Slowly, we began witnessing the emergence of the intellectually disabled citizen. These tendencies were further reinforced in the late seventies and early eighties, when patient empowerment demanded active participation in medical treatment. Perhaps it is not a coincidence that as ACT-UP (the

AIDS Coalition To Unleash Power) became instrumental in speeding access for AIDS

Treatment, there emerged the Self-Advocacy Empowerment Movement, which demanded that those living with intellectual disability become instrumental in their own decision-making and treatment. The recipient of care and the decision maker on the nature of care became intertwined. In one example, two authors, themselves living with

Down Syndrome, conceived of the term, Up Syndrome, the title of their book. In this book, they emphasized their pride and integrity of membership in the intellectual disabled community (Carey, 2009).

And yet the question remains if people living with intellectual disability should be conceived as individuals or citizens? As regarding community involvement, is the question community inclusion or community membership. The former involves questions of fitting a particular group of people into an already established structure. For many, this implies trying to, by force, connect one piece of jigsaw puzzle into an ill-fitting jigsaw pattern. It can be done, but the costs are the individual’s integrity.

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Community membership, however, reconsiders both the individual and the broader community. With the concept of community membership, membership is considered more than a right—social, economic, political, cultural, or combined. It is seen as a rite of passage. And therefore, society has a duty to facilitate this for those living with intellectual disability. If not, the implication is that these individuals are not human, or that community membership is not vital, which would undo the importance of membership. It would also limit the definition of citizenship with undemocratic connotations, reminiscent of the various early twentieth century political thinking with associated citizenship with privilege—to the exclusion of women, the poor, the non-

WASP, and those deemed disabled (Trent, 1994).

But this need for facilitating membership brings forth a prevailing debate within democratic theory on autonomy and independence, which parallels the debate on sameness and difference as the prerequisite for membership and citizenship. Liberal theory, a branch of democratic theory, stresses the importance of individuality and autonomy, thereby excluding many who because of circumstances—age, income, ability—do not meet its narrow terms of self-sufficiency for membership. Similarly, with republican theory, which stresses public participation as its own requisite for inclusion, those unable (or unwilling) for direct public participation are denied membership—or their membership is devalued (Carey, 2009).

Therefore, in this process of understanding intellectual disability and the disabled, the literature and the social response it influenced and reflected, created a social category.

As we have observed, diverse conditions and persons were coalesced into one category, though often diversely labeled, of mental disability. This entity was turned into a social

12 ! threat, then a social victim, and now, slowly, socio-cultural being. Recent studies on Deaf culture, for example, can contribute to a re-understanding of intellectual disability as one expression of ability, among many, with its own sense of values (Burch, 2001). Burch discusses the protest of the Deaf community laid the foundation for Deaf Culture. Many goals of social work and advocacy would have to be understood according to its own social system. The question isn’t whether institutions or community center are better providers of care, but to understand autonomy and responsibility and human dignity in different ways, so that other experiences of independence are understood, and then promoted.

The ever-shifting conception of intellectual disability reveals a paradox. Those deemed different have been pushed outside of or to the margins of the social-political order; and, yet, how they have been defined and conceived has been organized and created by the social-political order that excludes them. In effect, they are both integral to and simultaneously peripheral from society and its political organization.

Historiography and Its Impact on Social Work

As we have seen, intellectual disability has been historically understood by both academics and service provides as a medical condition. The medical model of disability conceives disability as an immutably inferior trait that can at best be treated with modest success. Deriving from the medical model is the economic model of disability. This approach emphasizes not the individual’s ability but the socio-economic constraints with providing services to individuals with disability (Shogren, K. & Broussard, R., 2011).

However, the social model, an increasingly prevailing model, works to conceive the

13 ! individual’s differences as not limitations but celebrations, a feature of human diversity.

And increasingly, the social model sees the human potential in such diversity (Shogren,

K. & Broussard, R., 2011).

Awakening to one’s human potential has been viewed by social work as an interaction between the individual and her or his environment. It is an axiomatic feature of all developmental models. For example, in Erik Erikson’s developmental model, at each stage, self-growth is achieved and the individual is enriched through the interplay between the self and the surrounding. And while growth in each stage demands a particular developmental achievement, all such achievements are thematically united by autonomy.

For individuals with intellectual disability, there is an increasing push to integrate them into the community through 1) employment, 2) housing situations that maximize the potential for decision-making, 3) meaningful recreational activities. The belief is that community integration promotes autonomy and self-determination, which in turn promote effective and positive adult life-outcomes. (Palmer, S. & Wehmeyer, M. &

Shogren, K. & William-Diehm, K. & Soukup, J., 2012)

The literature defines autonomy, or self-determination, as “volitional acts”, “as being primary agent in one’s life and to maintain or improve one’s quality of life.”

Volitional acts have also been described as “acting autonomously”, “being self- regulated”, “initiating and responding to events in a psychologically empowered manner”, and as “self-empowerment.” (Palmer et al., 2012) These definitions also adhere to the social work’s ethics of encouraging individuals to life self-directed lives. It is a value shared and promoted by all mental health advocates and providers.

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Yet two problems persist with this definition. First, these definitions are circular.

How does one determine an individual’s action as autonomous or self-driven? The qualities ascribed to autonomy and self-determination may very well be the qualities the researcher wishes to promote in the individual. For example, is it an autonomous or self determining decision for a person to desire to remain living at home rather than in individual living, despite the formers constraints? Similarly, an individual’s reluctance to leave sheltered workshops for community employment, though the latter may contain genuine benefits and self-enrichment, is self-regulating, or self-restricting? The literature does not touch on this topic. Second, it is not clear whether the benefits attributed to teaching self-determination are causal, or age-related developments that would have occurred inevitably which are attributed to interventions. The literature admits that a casual link has not yet been established.

Thus, a more fundamental question needs to be asked, which the literature needs to explore more deeply. The literature states that there appears to be a causal link between intellectual ability and social interaction and self-determination (Mcguire, J. , &

Mcdonnell, J., 2008) The literature also states that there is a causal link between self- determination and community interaction (Mcguire, J. , & Mcdonnell, J., 2008). But while the literature does concede that it is the link between the two is not clear—does self-determination leads to community interaction or the other way around—the literature does not discuss that perhaps those who do and benefit from community participation are possess those skills to being with (Palmer et al., 2012)

The literature does appear to become more nuanced in the terms of social integration (Wehmeyer, M. , & Bolding, N., 2001).It is recognizing that self-

15 ! determination is not mono-causal but determined by multiple factors: living situation, employment, and increasingly recreational activities. The belief is that the opportunity to make choices reinforces the ability to make choices. And yet the literature makes unsubstantiated assumption. For example, it assumes that living with family and individual living in preferable to community or cooperative living for promoting growth and decision making. Similarly it assumes that “recreational” activities by itself promote individual growth and exploration (Mcguire, J., & Mcdonnell, J., 2008).

However, the literature should more closely explore the meaning in the living circumstances of individual’s with intellectual disability. For example, the literature states that employment by itself is not adequate for promoting individual’s sense of self and self-determination. But rather meaningful work, competitive employment with proper compensation enables the individual to view her or himself as not somehow deficient but empowered, capable. Similarly, recreational activities contribute positively to self-growth if the activities themselves are meaningful. Watching television or coloring, for example, do not achieve these desired results. But here, the question of meaningful brings one back to the previous question. How is meaning determined and by whom and for whom? Should meaning reflect the individual’s abilities or does it have the potential to enhance the individual’s (albeit) hidden abilities (Mcguire, J., &

Mcdonnell, J., 2008).

In this way, the literature on promoting autonomy and self-determination for individuals with intellectual disability mirrors the literature on the protective factors that enable other vulnerable populations to grow and achieve. Mentoring, for example, has

16 ! been a consistent feature of protective factor for vulnerable populations (Shogren, K. &

Broussard, R., 2011).

But it bears repeating that viewing intellectual disability as a socio-cultural identity and community, similar to the Deaf Community, would transform the meaning of community integration for both the individuals and for the social workers. On a macro level, public policy and services can be reoriented to enabling individuals to create their own community, from which they can attain a sense of identity that would enable them to interact with the larger society from a different angle, than one of forced integration. On a micro level, it would enable both the individual and social worker to consider the individual abilities not as a characteristic to be feared, or pitied, or exalted, or as a deficit that can never be adequately compensated, but as a human trait on the human spectrum of traits and characteristics. From this perspective, other opportunities can be considered, than, say supportive employment, which attempts to integrate individuals into community life, with often mixed results and often available to only a certain segment. The foundations for such opportunities are already present, in, for example, the Special

Olympics or various Toastmasters speaker groups, which encourages public speaking for persons living with intellectual disability, through which they can obtain a new perspective on themselves and their sense of agency and belonging.

Our world is increasingly competitive on a global scale. And yet individuals with intellectual disability allowed to have community employment are shown to be resilient and resourceful and immune to the routine work that drive away their non-disabled counterparts. They possess traits not fully explored. And the exploration of these traits would undoubtedly promote their well-being and life-quality.

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Social Work and Social Justice

The current debate within the advocates of intellectual disability revolves around the notion of institutionalization versus community integration. An essential part of the problem lies in our current social construction of intellectual disability. For intellectual disability is a very wide spectrum, including those who live with autism but do not necessarily exhibit the reduction of mental ability—often, rather, the opposite. And it includes those for whom self-sustenance is a genuine challenge, and those who experience other difficulties, such as poverty or racism. For many of these individuals, community integration may or may not be an option.

An initial response is the emerging Human Rights Theory, which argues that all humans are entitled to live self-directed lives. The attempt is to respond to deficiencies in both democratic and republican theory, which presume that autonomy and participation are prerequisites for socio-political inclusion. And yet in Human Rights Theory’s universality lies its own deficits. What does it mean to declare the citizenship of all humans and it the obligation to address their needs when by addressing such needs the presumed dependence and reliance of the individual is reinforced?

The recent trend to conceive of the non-“disabled”, as the mentally accelerated is an attempted to undo the otherness implied in this very conception. As those with intellectual disability have increased their integration into society, there have emerged whole new identities: those who identify as intellectually disabled and as LGBT, for example. Or the problem of unwanted pregnancies and STD infections for those who live

18 ! with intellectual disability. These various developments show that the division between the individuals with intellectual disability and community is arbitrary and self-created.

But conceiving of persons with intellectual disability as an integral part of community, the question that emerges is not just of how we treat others. But in our treatment of others, we answer what kind of society we have and want. It requires us to answer who we are—all of us. And as psychoanalytic psychotherapy is beginning its preliminary work in successfully exploring the inner lives of those who live with intellectual disability, our common humanity shows no intellectual demarcation (Beaill,

1998).

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