Eugenics, genetics, and the minority group model of disabilities: implications for social work advocacy.
In the United States, genetic research, as well as policy and
practice innovations based on this research, has expanded greatly over
the past few decades. This expansion is indicated, for example, by the
mapping of the human genome, an expansion of genetic counseling, and
other biogenetic research. Also, a disability rights movement that in
many ways parallels other "minority" rights campaigns has
expanded. The coexistence of these developments poses intriguing
challenges for social work that the profession has yet to address in a
meaningful way. These issues are especially pertinent for social work
professionals in the crucial role as advocates for marginalized
populations. This article describes some of the concerns of disability
rights activists relative to genetic innovations and goals as well as
the instrumental role of the social work community in this important
KEY WORDS: advocacy; eugenics; medical model; minority group model; people with disabilities
Minorities (Civil rights)
Social work with minorities (Civil rights)
Social case work
Social work with the handicapped
|Author:||O'Brien, Gerald V.|
|Publication:||Name: Social Work Publisher: National Association of Social Workers Audience: Academic Format: Magazine/Journal Subject: Sociology and social work Copyright: COPYRIGHT 2011 National Association of Social Workers ISSN: 0037-8046|
|Issue:||Date: Oct, 2011 Source Volume: 56 Source Issue: 4|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
The recent expansion and practical application of genetic research
has fostered--depending on one s perception--utopian dreams of a world
without disability or dystopian nightmares of a world that is both
largely devoid and highly contemptuous of people with disabilities. As
professionals, social workers play an integral role in both
implementation of genetic research and facilitation of the inclusion of
people with disabilities within the community. Not only genetic
counseling, but other forms of individual and family treatment are
certain to be more greatly affected by genetic research and public
policies related to it in the near future. Moreover, social work
professionals from a broad range of backgrounds must be involved in
policy discussions and development relevant to these bioethical
concerns. In regard to advocacy, little explication needs to be given
that advocacy is an important element of social work and that this issue
arises particularly in regard to potentially vulnerable or historically
maltreated groups, such as people with disabilities.
To understand the professional role of social workers within the context of a "new world" of genetics, social workers should be aware of important historical precursors, especially the eugenic alarm period of the early 20th century. Although many in the profession may be familiar with the basic elements of eugenic control, the relevance of this historical information is not only instructive, but also essential to anyone who seeks to engage in discussions related to the current or future application of genetic research. In addition, professionals must understand that although the medical model may seem to be the most apt approach for viewing relevant issues, other frames of reference exist. Also important is the social or minority group model of disability. I describe the impact of historical eugenics on contemporary genetics and the role of the social model of disabilities within the context of these contemporary issues, and I discuss implications for social workers, especially as they attempt to consider the need to advocate for the rights of people with disabilities in the face of these innovations.
AMERICAN AND NAZI EUGENICS AND PEOPLE WITH DISABILITIES
With roots in the 19th century, the eugenics movement emerged as a major social force in the United States following the 1900 rediscovery of Mendel's laws of inheritance. Based largely on the writings of England's Sir Francis Galton (1870, 1907), the movement held that the human species could be improved through the systematic control of breeding practices. Eugenicists argued that if a nation developed methods to ensure that those with desired characteristics bred in greater numbers (termed "positive eugenics") while at the same time diminishing the breeding of those with undesirable characteristics (termed "negative eugenics"), the species would be improved (Kevles, 1985).
In the United States, early eugenics was inextricably connected to care and treatment of those who were diagnosed as "feeble-minded" (O'Brien, 1999; Smith, 1985; Trent, 1994). Development of the intelligence test shortly after the turn of the century allowed for the "scientific" delineation of the feebleminded element of the population. These people, and particularly "morons," were believed to be the nucleus from which a wide range of social evils emanated (Davenport, 1913; Goddard, 1914).
The primary methods of eugenic control included forced institutionalization and involuntary sterilization. The placement of morons in segregated institutions, eugenicists said, would forestall their procreative opportunities. Many eugenic advocates favored sterilization as a method of control because it was less expensive and, thus, more economically feasible than institutionalization (Reilly, 1991). During the first quarter of the century, tens of thousands of people who were diagnosed as feebleminded or insane would be institutionalized, sterilized, or both for eugenic purposes. The most important eugenic legal victory came with the Supreme Court's Buck v. Bell decision in 1927, which allowed the states to practice involuntary sterilization (Dudziak, 1986). An important element of social welfare history is that, in states such as Virginia and North Carolina, eugenic sterilization of people labeled as having intellectual disabilities paved the way for the forced sterilization of women (especially minorities) receiving public assistance (Britton, 1963). Some states additionally passed legislation restricting the ability of people with feeblemindedness and other disabilities to marry, and many early supporters of birth control also touted this as a method of eugenic control (Sanger, 1922).
Although the American movement would live on beyond the Great Depression, the hysterical fear of the moron, which had been its central driving force, lost impetus between 1915 and 1930. Institutional administrators and others came to admit that many cases of moronity were not genetic and that cultural factors such as poverty put many people at risk for a feebleminded diagnosis. Intelligence tests were called into question as presumably "normal" people increasingly came to be diagnosed as morons.
Although most of those in the emerging social work profession held the eugenics movement at arm's length, agreeing with certain of its aims but refusing to join eugenic organizations or make it an important aspect of their work, social reform publications such as the Survey (Davenport, 1912; Davis, 1912; Kite, 1912) frequently published articles touting the movement. In addition, until World War I, the National Conference of Charities and Correction included numerous papers and discussions on the topic, almost exclusively by eugenic supporters.
By the 1930s, the primary supporters of eugenics who remained active were people who believed that eugenic goals could be extended beyond targeting simply people and families with "degenerate" qualities and could also diminish the percentage of lower "race types" within a nation. They believed that the various "races" could be viewed along a hierarchical dimension, with greater value given to those belonging to presumably "higher" races (Gould, 1981; O'Brien, 2003). They also believed that miscegenation was diminishing the vitality of the Nordic or Aryan race. This segment of the American movement, then, directly influenced German notions of eugenics, both prior to and during the Third Reich (Kuhl, 1994).
Although a eugenic faction had developed in Germany prior to Hitler's ascension to power, it had little success in policy formation. Indeed, influential German eugenicists looked with envy at the gains wrought by U.S. eugenicists, especially state sterilization laws (Kuhl, 1994). Hitler's own interest in eugenics was an integral component of his overall scheme of race hygiene and was widely disseminated a decade before his rise to power through the pages of Mein Kampf (Hitler, 1925/1971). Within his first year in power, he instituted a sweeping eugenic sterilization law that was targeted at people with mental and physical disabilities ("Eugenical Sterilization in Germany," 1933). This policy would put Germany at the forefront of the eugenics movement, and by the time the program ran its course, approximately 400,000 German citizens would be forcibly sterilized (Proctor, 1988; Weindling, 1989).
In 1939, with the onset of its attack on Poland, which marked the beginning of World War II, the Hitler government covertly implemented its most horrendous policy to eradicate people with disabilities from the Reich, the T4 euthanasia program. Although the Nazis had been discretely bringing about the deaths of thousands of people with disabilities in institutions over the previous years, the T4 program instituted the assembly-line killing apparatus that would characterize the Jewish Holocaust. Prior to their utilization at the Holocaust sites, gas chambers were first installed and "perfected" in six mental institutions. Over the course of a four-year period, these facilities took in and murdered approximately 70,000 "disabled" people from all over Germany, with the vast majority of them being people labeled as "feebleminded" or "insane."
The Nazi program to eliminate disability from the German cultural landscape shared a close conceptual relationship with its justification for antisemitic measures. According to Harrington (1995), both Jews and the "carriers of inferior genetic material" were viewed by state physicians as imminent threats to the whole and sound German "body" (p. 373).
With the full realization of the extent of the Nazi's eugenic programs, it largely became a taboo subject for several decades. Although there was a direct connection between U.S. and German eugenic programs, this had much more to do with the homogeneity of the membership of the American movement at the time than it did with the programs themselves. In other words, most moderate supporters of eugenics in the United States had left the movement prior to 1930. It would be oversimplifying matters greatly to imply that eugenics meant the same thing in both nations. Among leading eugenicists in each nation, however, the principle target group for eugenic control remained fundamentally the same: people with mental and physical disabilities.
HOPES AND FEARS OF "NEW EUGENICS"
With the rapid expansion of genetic advancements over the past few decades, including the recent mapping of the human genome, historical eugenics is frequently invoked, usually by opponents of such advancements, as a pertinent point of discussion related to the practical and moral implications of such efforts. Many discuss the imminent arrival of a new era of eugenics, and some disability rights groups have even compared genetic innovations, especially genetic testing coupled with abortion, as a form of cultural or minority group genocide. Before discussing the relevance of some of these arguments for social work education programs, it is important to define important terms and consider a few of the major assumptions and misconceptions that surround the issue.
First, we need to consider more precisely what "eugenics" is. The term is invoked freely, and its definition varies widely on the basis of its utility in any particular situation. At its most basic, eugenics, as Galton (1907) first defined the term he created, means "good in stock" and pertains to any cultural, environmental, or political mechanisms (for example, fiscal or social incentives or disincentives, differential medical access, laws pertaining to procreation) that "give the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable than they otherwise would have" (p. 17). Historically, then, eugenics relates to family bloodlines or the collective "gene pool" more so than individual characteristics. This presumption was a fundamental aspect of the formulation of eugenic policy in both the United States and Nazi Germany.
A core problem with the conceptualization of eugenics, not only as Galton (1907) viewed it but even today, is that a subjective judgment of "suitability," "goodness" or "desirability" lies at the heart of any program of controlled breeding. A related problem is that the characteristics one might control for could be questioned. Why try to foster intelligence as opposed to morality, compassion, or athleticism? Because of the historical importance of heredity and family bloodlines in defining eugenics, it may be questioned whether all programs that are generally considered "eugenic" rightly fall within this domain. Many of those who were targeted for extermination by the Nazi euthanasia program, for example, were not likely to procreate. Either they had already been sterilized or placed in an institution or the extent of their disability precluded the likely possibility of reproduction. Even for those who might not have been sterilized, the cost of transporting them to the asylums and killing them far outweighed the cost of sterilizing them, which would have been just as effective from a purely eugenic standpoint. The principal goal of the program was, therefore, not "eugenical," because it was not simply to ensure that the bloodline of these people was stopped but, rather, to remove them from the world altogether. Likewise, one could contend that contemporary discussions about physician aid in dying do not relate to "eugenics" per se, because most of those who would likely fall under such a policy would not be expected to produce offspring. Many experts would consider this restriction of the word to be splitting hairs, but, like any term, "eugenics" is at risk of losing any real meaning if it is expanded to an untoward degree. This is particularly true here, because we are dealing with a term that carries with it an extraordinary amount of emotional baggage.
Contemporary or future genetic practices that are generally considered eugenic include measures of positive eugenics, such as cloning and genetic engineering, and negative eugenic procedures, such as prenatal testing and the aborting of impaired fetuses, preimplantation screening of embryos for certain genetic conditions, and genetic counseling that results in a couple who is at risk for passing on a hereditary condition deciding not to have children.
Whether certain reproductive technologies and breeding practices rightly can be considered eugenic is often questioned on several grounds. Most important, whereas previous practices such as sterilization and restrictive marriage were state sponsored, contemporary decisions are driven by prospective parents themselves. Such practices are widely viewed as an important element of parental self-determination. Supporters argue that nondirective counseling provides potential parents with a realistic awareness of the child's limitations and the possible impact on the family and leaves the decision in their hands. One could, in fact, argue that government restrictions of such research or its application would be ideologically reminiscent of these earlier forms of eugenics where the breeding opportunities of people were controlled by the state.
Another important issue here is that decisions made by parents are largely contingent on their presumption of micro- or mezzo-level issues that could arise relative to a child's presence in the family. These issues include impact on the parents or their occupational opportunities or on siblings, the child's presumptive quality of life, financial considerations, and other such issues. One would assume that macro issues, such as the need to protect the larger gene pool or support the positive evolution of the species, seldom arise in the course of such decision making. Although eugenics was designed to have large-scale impact on a population, it appears that this is not the case with contemporary family-based decisions. It is certainly possible, however, that the governmental support for genetic testing and access to testing and procedures could be motivated, in part, by such demographic or macroeconomic issues.
ROLE OF THE SOCIAL MODEL OF DISABILITY IN THE DEBATE
Some of the assumptions introduced in the previous section have been questioned by those disability advocacy groups that subscribe to the minority group or social model of disability in opposition to the prevailing medical model. Rather than viewing disability from the standpoint of nondisabled observers who believe they can make moral judgments of what it would be like to live with a disability, such activists argue that, as in the case of any other minority group, only those individuals who fall into the class in question may rightly make judgments about the nature and personal meaning of the "minority condition."
Many people who hold to the social model of disability contend that even if parental self-determination is viewed as the driving force behind the development and use of genetic technological advances, such decisions take place not within a sociocultural vacuum but, rather, against the backdrop of a society that is overly pessimistic about and at times even resentful or fearful of people with disabilities. Moreover, such advocates frequently note, the powerful medical industry plays a highly influential role in framing disability for prospective parents and also has a vested interest in the widespread development and deployment of relevant technology.
Many of those who question the expansion of prenatal and embryo testing from a minority group framework note that we would be wary of allowing the abortion of fetuses on the basis of gender, for example, because this would constitute sexual discrimination, but that the majority of the population has little concern about such discrimination on the basis of disability status. Indeed, carrying such a child to term--and, thus, "imposing a disability" on him or her when it could be avoided--is frequently flamed as selfish and morally suspect (Seligmann & Foote, 1991).
Although many would question the aforementioned analogy in the first place, given that disability is perceived as carrying impairment limitations that gender does not, those who support the argument often note that the degree of impairment assumed to occur with any particular disability is, to some degree, a matter of social construction or subjective presumption that arises from an overly pessimistic social view of disability. Those taking this position will often point to historical examples in which gender, race, and other minority statuses served as "carriers" of impairment, at least in the minds and writings of elite white men, and this mental or physiological impairment was used to rationalize the denigration of such groups (Baynton, 2001; Gould, 1981).
Adding complexity to these issues is the fact that the term "disability" is used to describe a wide variety of conditions. Even the staunchest opponents of fetal selection would be hard-pressed to disallow testing in the most extreme cases--for example, Tay-Sachs disease or anencephaly. However, supporters of testing might question why it is taken for granted as appropriate in cases of children with Down, where little apparent pain or discomfort is involved and the person may live a fairly independent life. Further muddying the waters, even a specific disability has a wide range of impact on unique individuals, which relates not only to the differential physiological effects of the condition, but also to a host of additional psychological, social, life-stage, and environmental elements (Marinelli & Dell Orto, 1991; Parens & Asch, 2000).
The lines drawn by parents, physicians, social workers, policymakers, and others who are involved in the decisions, on either a macro or micro level, will relate not only to factual considerations related to the type of impairment, but to a host of subjective elements, including, but not limited to, prior knowledge of and experience with disability, resource concerns, media and metaphoric presentations of such individuals (Garland-Thomson, 2001; O'Brien, 2003), personal religious beliefs and values, economic and professional self-interest, and referent group beliefs.
Returning to the minority group perspective, many disability rights advocates would contend that people with disabilities receive two important "meta-messages" about the nature of disability in U.S. culture and that these messages directly contradict one another. The first meta-message is that people with disabilities are accepted as full citizens in the community, that any form of discrimination or prejudice against them is to be resoundingly condemned by society at large, and that the community should do its part to accommodate individual needs. The second meta-message is that fetuses with those same disabilities are undesirable or, at least, that the parental decision to prevent the birth of such a child is a perfectly reasonable one, not to be interfered with. Furthermore, this message may imply a meaning of how others in the community with such conditions are valued (Ajandi, 2008-2009).
Is it viable, these critics contend, for an individual, group, institution, or profession to hold to both messages concurrently? Can we, in other words, honestly tell people that we are embracing their presence in the world while we covertly or explicitly support decisions that would diminish the birth of others like them because of the nature of their specific "minority condition"? One might argue that abortion is, no matter one's personal view of the matter, a legal option for parents, and, thus, such a decision is between the potential parents and their physicians. As noted earlier, however, a proposed policy that would allow abortion for gender-selection purposes or any other form of discrimination (for example, in the future, one could be able to test for a genetic marker related to sexual orientation) would likely be opposed by a large segment of the social work community, including those who generally identify themselves as "pro choice," on the grounds that this constitutes an inappropriate form of discrimination. Parental privacy in such decisions, therefore, is not sacrosanct.
TALE OF TWO POLICY STATEMENTS
The two meta-messages described in the previous section come through very clearly in two policy statements ("Genetics" and "People with Disabilities") in Social Work Speaks (NASW, 2003c), NASW's most important publication related to policy issues. This publication includes social work policy statements on a variety of issues and stands as the "voice of the profession" regarding these issues. Both of the policy statements were last revised in 1999 and, thus, were due for discussion at the Delegate Assembly held in the summer of 2008.
The "Genetics" statement focuses heavily on the importance of parental self-determination in genetic testing decisions, along with such concerns as the need for equal access to genetic procedures, the importance of a value-free stance by genetic counselors, and the maintenance of privacy related to genetic tests and findings. The policy does not really touch on disability or eugenic issues to any degree, except to note that "NASW opposes the use of genetic research to alter populations of people and to remove certain traits deemed by society as 'unfit'" (NASW, 2003a, p. 164). Reading between the lines, then, the statement appears to say that parental decisions vis-a-vis the termination of a pregnancy for disability purposes are supported, but large-scale programs (for example, governmental, corporate) to direct such efforts or incentivize parental decision making are inappropriate. As noted earlier, however, many disability rights advocates would contend that adverse parental decisions and negative governmental policies related to people with disabilities arise largely within the same contextual atmosphere and are initiated by many similar motives, including fear of, pejorative attitudes toward, and economic costs associated with disability. It is at least valid to question whether it really makes much difference if a longterm diminishment in a particular population arises from a large number of separate personal decisions as opposed to a government policy. To many of the surviving members of the "targeted" population, the difference may seem to be largely irrelevant.
The "Genetics" policy statement is completely disassociated from the "People with Disabilities" statement, as if the two have little if any relation to one another. The latter statement, as one might assume, includes numerous comments that support the integration of people with disabilities within the community and decry the "negative social attitudes" that "prohibit them from fully participating in U.S. society" (NASW, 2003b, p. 272). This statement further notes that
NASW supports and is willing to take action with people who have disabilities in advocating for their rights to participate fully and equitably in society. These rights include the freedom, to the fullest extent possible, of all people with disabilities to live independently, to enjoy the rights of full societal membership, to exercise self-determination, and to have full participation in issues related to education, housing, transportation, work, health care, social services, and other public accommodations. (NASW, 2003b, p. 273)
Genetic testing is not mentioned anywhere in this latter policy statement, and there is no effort to reconcile the inherent contradictions within the two statements. It should be noted that the 2008 drafts of the revised versions of these policy statements make no efforts to deal with these issues to any greater degree than did the 1999 policy statements.
IMPLICATIONS FOR THE SOCIAL WORK PROFESSION
The issues that arise here are exceedingly complex, given the wide range of conditions and experiences that the term "disability" entails, and, thus, there are no simple answers to the questions posed. The intention is neither to second-guess parental decisions nor to question the morality of the parents who confront them, although it seems impossible to raise these questions without inviting such an accusation. Rather, the motivation for this article is to initiate this important conversation within social work, especially considering the profession's role as an important advocate for traditionally disempowered and historically maltreated groups.
Many of those who have written about disability issues in social work have contended that professionals in the field have not embraced the minority group model of disability (Gilson & DePoy, 2002; Hiranandani, 2005; Mackelprang & Salgiver, 1996; O'Brien & Leneave, 2008), and it stands to reason that this is especially the case in areas of the profession that have strong connections with or incentives for pleasing or catering to medical providers or institutions and those who have experienced professional socialization within the medical arena. This is particularly important because much of the interaction between social workers and people with disabilities, or their families, takes place in a medical setting.
This lack of emphasis is also apparent in social work education. Gilson and DePoy (2002), for example, contended that the minority group model of disability, "although consistent with the mission and values of social work, receives limited attention in social work curricula" (p. 153).To communicate a message that is consistent with the focus on self-determination and empowerment, particularly in relation to vulnerable groups, the profession needs to infuse the minority group model into disability-related classes. Students may experience much confusion given the potential range of models within which disability-related content may be delivered. They may go from a policy advocacy course that focuses on the need to empower disenfranchised groups and the negative aspects of labeling to a class that approaches the subject from a diagnostic/medical perspective. In one context, students may be told that professionals are to support consciousness-raising activities related to the rights of people with disabilities, and in the other, the inherent message may be that they should help "fix" such people. In any such courses, therefore, instructors are strongly encouraged to discuss the recent history of these various frameworks, their relevance to the profession, and their similarities and differences. The conceptual and ethnographic understanding of disability is an important element of any professional course focusing on the topic, and probably the starting point for such instruction.
In addition, discussions of contemporary and past eugenic practices should be expanded and contextualized within social work education, and students should develop an awareness of the relationship between historical eugenics and what is frequently termed "new eugenics." Current and past efforts to support or discourage procreation of particular social groups have relevance to numerous minority populations (Britton, 1963), not just people with disabilities. Such efforts tell us a great deal about cultural values and the status accorded to these various marginalized groups. They may give rise to a range of controversial social policy issues, such as efforts to "license" parents, the incentives or disincentives for procreation that are built into tax codes, and recommendations that those parents who have been found guilty of severe abuse accept sterilization as a consequence of their actions.
The social work profession principally views disability from a diagnostic lens and places only minor emphasis on the eradication of oppression and commitment to diversity when it comes to people with disabilities. Although social workers might advocate on behalf of people with disabilities while operating from a medical model framework, such advocacy normally takes on a paternalistic tone. One might well argue that paternalistic advocacy is a misnomer and only formalizes pejorative stereotyped views of the group in question. True advocacy requires a partnership with those who are maltreated (Friere, 1986) and a movement away from the linear relationship that is an inherent element of the medical model.
In addition, social workers who act in a clinical role with clients who have disabilities should be extremely wary of prejudgments or subjective assumptions regarding the meaning of the condition or the impact it likely has on the person as well as beliefs about the presumptive impact of the disability on identified problems. Individual, family, or group practice that is based on a social justice focus should treat disablement in a similar way that race, age, gender, or other differences would be approached. In other words, the unique meaning that the "condition" has for the person is of primary significance.
Finally, social workers need to understand the important role of members of the profession in policy development relative to disability and bioethical concerns and proposals that have possible eugenic implications. This is especially a concern because, as Allen (1996) noted, neoeugenic approaches may become very attractive should the nation suffer a protracted economic downturn. During times of economic hardship, economic rationales for eugenic control may come to the fore. The recommendation here is that social workers who have such policy involvement bring to the role a wider range of theoretical frameworks, especially related to disability issues. Professionals who are involved in the implementation of genetic technology or other medical innovations are most likely those with a medical background and, thus, close ties to those who approach disability issues from a diagnostic or medical model. At the risk of generalizing, it can be questioned whether such social workers would be strong advocates for people with disabilities.
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Gerald V. O'Brien, PhD, is professor, Department of Social Work, Southern Illinois University Edwardsville, 1306 Peck Hall, Edwardsville, IL 62026; e-mail: firstname.lastname@example.org. The author acknowledges Jean McGurk O'Brien, Kathleen Tunney, Emily Lane, and Serene Tobey for their helpful comments on early versions of this article.
Original manuscript received November 30, 2009
Final revision received April 16, 2010
Accepted April 16, 2010
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