Aunos, M., & Feldman, M. A. (2002). Attitudes towards Sexuality, Sterilization and Parenting Rights of Persons with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 15(4), 285–296.
Aunos and Feldman give an overview of articles about attitudes towards sexuality, sterilization, and parenting by people with intellectual disabilities. They present various studies that explore the attitudes of teachers, service workers, parents of persons with disabilities, and people with intellectual disabilities. The examined studies show that support for sterilization is widespread. However, when it comes to attitudes towards marriage, sexuality, and parenting, there are differences. For example, one study shows that if there is more positive and intimate contact with people with disabilities, attitudes towards the rights of people with intellectual disability to express their sexuality are also more positive. An important issue raised in this article is that social factors, including a lack of social support, can negatively affect the parenting abilities of people with intellectual disabilities.
Brady, S. M. (2001). Sterilization of Girls and Women with Intellectual Disabilities: Past and Present Justifications. Violence Against Women 7:432-461.
Brady discusses findings from the research on sterilization cases in Australia from 1992 to 1999. She analyzes court reports from that period and compares them with the eugenics period in the first half of the 20th century. What is common to the old and new reasons for sterilization is that it is not presented as “invasive, intrusive, or risky procedure but as a beneficial, safe, and simple surgical technique” (p. 437). Brady argues that sterilization is “not about medical problems but about social values, notions of worth, and assumptions about the nature of girls and young women with disabilities” (p. 433). One of the main features of the new ways of justifying sterilization is claiming that it is in the “best interest” of the girls who are being sterilized. Brady presents several main themes that are used to justify sterilization; one of them is that girls with disabilities are vulnerable to sexual abuse. The other themes, among others, include parental fitness, which questions mothering abilities; and parent wishes, which is based on the belief that what parents want is in the best interest of the girl. Finally, she concludes by saying that the main principle in sterilization cases should be bodily integrity.
Carey, A. C. (2003). Beyond the Medical Model: a reconsideration of ‘feeblemindedness’, citizenship, and eugenic restrictions. Disability and Society, 18, 411-430.
In this article Allison Carey, a notable advocate for civil rights of persons with disabilities, focuses on including the study of disability in citizenship scholarship. Carey suggests that in order to understand historical phenomena, such as practices regarding eugenics in the U.S., we need to examine a broader context including the legal framework that was dominant at the time.She argues that in addition to medicalization we need to look at how legal and political structures, as well as the broader relational context, impacted citizenship and eugenics restrictions of individuals with intellectual disabilities. Carey states that disability studies, as well as citizenship scholarship, could benefit from examining intellectual disabilities in relation to prevailing models of citizenship. She argues that examining practices and occurrences regarding intellectual disability will also contribute to our understanding of citizenship making. Furthermore, Carey suggests that examining the social aspects of disability could help us illuminate other historical phenomena, such as treatment of minority groups.
Carmichael, B. (2003). The Human Genome Project- Threat or Promise. Journal of Intellectual Disability Research, 47:505-508.
In this short article, Carmichael examines the moral status of persons living with disabilities in relation to disability screening procedures. Carmichael writes from her own personal experience, as her two brothers live with the Fragile X syndrome, as well as from her experience as a genetic counsellor. She suggests that many families with whom she worked believe that the Human Genome Project could help prevent disability, without seeing this project as a threat to devaluing their children’s lives. The main question guiding this article is whether the Human Genome Project, and more specifically, prenatal screening procedures, threatens the moral status of persons who are currently living with a disability. For the author, that is not the case.
Chandler, M., & Smith, A. (1998). Prenatal screening and women’s perception of infant disability: A Sophie’s Choice for every mother.Nursing Inquiry, 5(2), 71–76.
Chandler and Smith review available qualitative studies regarding prenatal screening and dilemmas women face when it comes to decisions about pregnancy termination, undergoing the screening in the first place, and raising children with disabilities. The authors conclude that the termination of pregnancy after undergoing screening procedures is followed with acute grief, guilt, and fear. The authors highlight two main factors in the decision to terminate an abnormal fetus: magnitude of the anomaly and the influence of others. When it comes to the influence of others, in addition to family, health professionals also play an important role in this decision process. Chandler and Smith warn that there is a danger that this kind of practice may promote a cult of perfectionism. Furthermore, the authors conclude that in order to illuminate empirical research in this field, further qualitative studies regarding women’s experiences and views are needed. Additionally, and equally as important, they propose further research that offers a glimpse into the quality of life of disabled people, their contribution to the society and enjoyment of life, and how that may influence future bioethical decisions.
Clapton, J. (2003). Tragedy and catastrophe: contentious discourses of ethics and disability. Journal of Intellectual Disability Research, 47(7), 540–547.
In this article Clapton discusses the relationship between bioethics and intellectual disability. She identifies two discourses as central within this relationship – tragedy and catastrophe – that call into question the adequacy of bioethics as a discipline. Namely, as bioethics aims to define what is “good” for humanity and improve the quality of life, certain normative assumptions are being used when defining “good”, and disability is often understood as “not-good”. People with disabilities are often portrayed as sources of burden, and while tragedy refers to private arena, catastrophe signifies public concern. Clapton calls on bioethics to revise its conceptions of “good” and “not-good”, which is based on tragedy and catastrophe discourses. She suggests that further qualitative research on experiences of persons with disabilities and their families is needed.
Dowbiggin, I. (1995). Keeping This Young Country Sane: C.K. Clarke, Immigration Restriction, and Canadian Psychiatry, 1890-1925. The Canadian Historical Review. 76: 598-627.
Dowbiggin presents the career path of famous Canadian psychiatrist, Charles Kirk Clarke (1857-1924). This article also explores the intersections between psychiatry, eugenics, and immigration restrictions. Dowbiggin notes that the medical inspection of immigrants was widely supported among North American psychiatrists. Clarke was one of the leading professionals that sought to expand the influence of psychiatry beyond asylums, and together with other psychiatrists created an approach known at the time as “new psychiatry”. Clarke was particularly interested in immigration restriction, namely, involuntary measures that aimed to reduce hereditary transmissions of defects (mental, physical, and behavioural). He believed that child immigrants posed a threat to public mental health, as they presented traits of ‘degeneracy’ such as vice, criminality, and mental illness. Unlike some other professionals, Clarke never advocated for sterilization, but he did support the segregation and medical inspection of immigrants. Dowbiggin argues that theories about heredity, eugenics, and immigration were shaped more by Clarke’s occupational role as a psychiatrist role than by actual national prejudices against immigrants.
Grekul, J. (2008). Sterilization in Alberta, 1928-1972: Gender Matters. Canadian Review of Sociology 45:247-266.
Grekul discusses how ideas about gender and reproductive responsibility shaped the sterilization program in Alberta. Mental health institutions were twice as likely to suggest that women should be sterilized. Also, women made up a majority of people eventually sterilized. Additionally, the author argues that women and men were sterilized for different reasons. While men were publicly dangerous (criminals, molesters), women were often not seen as suitable mothers and they were more likely to be sterilized for violating society’s moral order. Compared to men, more attention was paid to women’s sexual history. Women were described as “being hysterical, experiencing depression after childbirth, being nervous and worrisome, or otherwise weak” (p. 258). Grekul argues that Eugenics in Alberta was about power, status, control, class, immigration, but also gender.
Hampton, S. J. (2005). Family eugenics. Disability & Society, 20(5), 553–561.
In this article, Hampton discusses whether prenatal screening is a eugenic practice. He suggests the procedure of prenatal screening is leaving prospective parents with a eugenic decision, which he dubs ‘family eugenics’. Hampton argues that parents are not properly informed, and ultimately not given a choice in regards to prenatal screening. Further, there are no supports in place to help parents understand parenting a child with disabilities, thus, their decisions are being directed. Following Turnbull’s (2000) analysis, Hampton suggests that the process of screening is implicitly coercive. One other element of family eugenics is located in the family itself; as an example Hampton considers the phrase “as long as it is healthy” that is often heard when people refer to a child. According to Hampton, in the case of prenatal screening discrimination is exercised against the unborn through the genetics of the fetus, which also re-opens the debate of when life begins. Hampton concludes that he sees the term ‘eugenics’ to be pejorative and not providing any help in the analysis of prenatal screening.
Hubert, J. (2000). “The Social, Individual and Moral Consequences of Physical Exclusion in Long-Stay Institutions.” Pp. 196-207 in Madness, Disability and Social Exclusion: The Archeology and Anthropology of ‘Difference’, edited by J. Hubert. New York and London: Routledge.
Although Britain has not experienced eugenic policies on the scale of other regions, institutionalization played an important role in shaping attitudes towards people with disabilities. Hubert conducted an anthropological study that looks at the identities and personal histories of twenty-two men who have spent the majority of their lives in an institution. Using the example of one inmate, David, Hubert demonstrates how institutions contribute to the conflicting representations of people with disabilities – they are presented as vulnerable in regards to their sexuality, while at the same time they are considered to be dangerous. The study also looks at how parents and the wider community perceived persons with intellectual disabilities depending on whether they lived in the institutions or with their families. Additionally, Hubert briefly presents common reasons in favour and against deinstitutionalization, arguing that mere closure of the institutions would not be enough to revoke stigmatization of disabled individuals.
Jones, R. L. (1999). “The Master Potter and the Rejected Pots: Eugenic Legislation in Victoria, 1918-1939.” Australian Historical Studies, 113, 319-342.
Jones examines eugenic legislation in Australia during the interwar period. He argues that during the interwar years a small but influential group of ‘reform eugenicists’ fervently tried to pass legislation that would deny a significant portion of the population basic rights and freedoms, including the right to reproduce. This article introduces different arguments and rationales that were in the center of the debates regarding eugenics. The author emphasizes that opposition to eugenics movement did not exist in either professional or public domain. Nevertheless, the existing legal framework was not sufficient to implement the eugenic policies, and after 1939 both the legislation and the discussion regarding disabled persons’ rights vanished.
Lafferty, A., McConkey, R., and Simpson, A. (2012). Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities. Journal of Intellectual Disabilities, 16(1), 29–43.
Lafferty, McConkey, and Simpson’s research aims to better understand the barriers faced by persons with intellectual disabilities in regards to engaging in relationships and receiving sexuality education. This research was undertaken in Northern Ireland and included one hundred people interviewed in both group and individual interview sessions. This research identified four barriers:
- The need to protect vulnerable persons: the family members who participated in the interviews were struggling to find a balance between the protection, and the personal development of the person in their care.
- The lack of training: namely, none of the persons with intellectual disabilities felt prepared to engage in sexual relationships.
- The lack of educational resources.
- Cultural prohibitions arising from religious beliefs and ideas of “acceptable sexual behaviour”.
The authors suggest that the impact of these barriers could be lessened through a partnership across these groups involving the provision of training and information about, and the empowerment of, people with intellectual disabilities.
Lombardo, P. A. (2012). “Return of the Jukes: Eugenic Mythologies and Internet Evangelism”, Journal of Legal Medicine, Vol. 33: 207-233.
In this article, Lombardo describes how myths about the Jukes family, which “came to symbolize the idea of inherited intergenerational family defects”, entered contemporary evangelical teachings. Lombardo offers an overview of eugenic mythology, contextualizing the emergence of stories about the Jukes family and other “moral defects” as a method for justifying eugenic policymaking. Early studies on the Jukes stem from the late 19th century; several studies aimed to prove the social situation of the family, said to span 6 generations and over 900 individuals who were “commonly idiots, imbeciles, and lunatics” typically impoverished and/or incarcerated, was a result of “physical and moral degeneration” tracing back to one “degenerate” woman (pg. 210-211). While ministers speculated about religious habits of the family, anecdotes about the Jukes entered Sunday services, religious texts, and instruction manuals, encouraging parishioners to consider the ‘danger’ of problematic heredity. Although the studies of the Jukes family faced major criticism, and were ultimately labeled a flawed undertake of early eugenics, the religious use of the Jukes family remained. Lombardo provides examples of recent books and Internet sources that continue to deploy myths about the Jukes family. These self-help books, ‘inspirational’ materials, and website pages written by evangelists, self-proclaimed humanitarians, leaders, and televangelists utilize eugenic mythology in order to invoke notions of guilt, curses, and intergenerational sin. Lombardo notes that while those who invoke these eugenic arguments may not be aware of their origins and previous use, “it is still true that contempt for the poor, the diseased, and the powerless remains a part of our current political landscape” (p.232).
Lombardo, P. A. (2009). “Disability, Eugenics, and the Culture Wars”, Saint Louis Journal of Health Law & Policy, Vol. 2: 57-80.
The history of eugenics often finds its place in popular culture in heated debates about disability; here Lombardo addresses the complicated implications of invoking the most well-known negative results of eugenic programs in political debates. Lombardo argues that the use of eugenics as a rhetorical tool is harmful, and cautions use of the term ‘eugenics’ without adequate consideration of the historical context surrounding such programs. Lombardo offers examples of factual manipulations that create an illusion of causal links between historical figures and eugenics programs, which he argues are over-simplifications. By examining popular narratives, Lombardo outlines how inaccurate accounts of eugenics are created. For example, Lombardo challenges the claim that there is a direct link between the Darwinian theory of evolution and the abortion of disabled fetuses; Lombardo reasons that arguments such as these are dangerous simplifications that produce inaccurate accounts of eugenic history, and are neither successful in contextualizing the actual root of social movements nor an adequate method of advocating for the rights of disabled people. He urges us to acknowledge that “many ideas were swept into the mix, none of them alone sufficient to account for the laws passed to advance the eugenic cause, or to explain the crimes committed in the name of eugenics” (p. 78).
Malacrida, C. (2012). “Bodily Practices as Vehicles for Dehumanization in an Institution for ‘Mental Defectives’”, Societies 2012, 2, 286-301.
This article analyzes the processes of dehumanization that occured in the Michener Centre, a total institution for the purported care and training of people deemed to be mental defectives that operated in Alberta, Canada. I report on qualitative interviews with 22 survivors, three ex-workers, and the institutional archival record, drawing out the ways that dehumanization was accomplished through bodily means and the construction of embodied otherness along several axes. First, inmates’ bodies were erased or debased as unruly matter out of place that disturbed the order of rational modernity, a move that meant inmates were not seen as deserving or even requiring of normal human consideration. Spatial practices within the institution included panopticism and isolation, constructing inmates as not only docile but as unworthy of contact and interaction. Dehumanization was also seen as necessary to and facilitative of patient care; to produce inmates as subhuman permitted efficiency, but also neglect and abuse. Finally, practices of hygiene and sequestering the polluting bodies of those deemed mentally defective sustained and justified dehumanization. These practices had profound effects for inmates and also for those charged with caring for them.
Malacrida, C. (2010). “Understanding Income Support Policy in Canada and the United Kingdom: Women’s Narratives and Critical Discourse Analysis”, Disability & Society, 25:6, 673-686.
This paper examines linkages between women’s experiences in accessing information, services and public policy relating to income support in Canada and the UK. Drawing on narrative interviews, the author finds mothers with disabilities are often embedded in complex relations of care, experiencing both embodied and social barriers. Additionally, by employing critical discourse analysis, it is clear that policy in both contexts is written not only inaccessibly and confusingly, but is directed toward an able‐bodied, independent, resource‐rich ideal citizen. Thus, policy in both contexts is disabling and pathologizing. There are differences in resources that are written into the policy and available through the UK network of Citizen’s Advice Bureaus that would indicate that the UK offers a breadth of services and avenues for advocacy that are unavailable in Canada. Further, the Canadian policy appears to be more adversarial and surveillance‐based than the UK policy.
Article Full Text at Taylor & Francis Online
Malacrida, C. (2009). “Performing Motherhood in a Disablist World: Dilemmas of Motherhood, Femininity and Disability”, International Journal of Qualitative Studies in Education, 23:1, 99-117.
Women are expected to aspire to norms of femininity that include ideal motherhood, where mothers are positioned as ever available, ever nurturing providers of active, involved and expert mothering – indeed, being a caregiver is a master status for adult women in modernity. While this may be the case for all women, mothers who are disabled can have more a complicated relationship to ideal motherhood than others, because they are perceived of either as asexual and inappropriate to the role of motherhood, or conversely because they are seen as sexually victimized and at risk. This study examines the contradictions and tensions embedded in disabled mothers’ performances of ideal motherhood, drawing on qualitative interviews with 43 Canadian mothers with a variety of disabilities. The article examines how women with disabilities reconcile the demands of ideal mothering against the realities of their disabilities. I ask how these women perform motherhood in ways that will undermine or challenge the perceptions of others. It also attends to the ways that normative orders relating to femininity and motherhood are embedded in mothers’ social interactions with peers, helping professionals and structures such as funding and care provision policies. Despite these barriers, however, women with disabilities go to creative and extraordinary lengths in order to be seen as complying with ideal motherhood, perhaps as a way to lay claim to a maternal and sexual identity that society frequently denies them. The experiences of mothers with disabilities as they negotiate the tensions of ideal motherhood permit us to see the challenges this construct poses for all women, and thus they call for a feminist politics that will challenge this ideal and work for change in the lived experiences of mothering.
Article Full Text at Taylor & Francis Online
Malacrida, C. (2009). “Gendered Ironies in Home Care: Surveillance, Gender Struggles and Infantilization”, International Journal of Inclusive Education,13:7, 741-752.
Women are normatively expected to provide nurturance to the men in their lives through emotional support, and to the children in their lives through active, involved and expert mothering – indeed, being a caregiver is a master status for adult women in modernity. While this may be the case for all women, mothers who are disabled can have more a complicated relationship to caregiving than others, because they are both receivers and providers of care in the home. Women with chronic disabilities are often recipients of home care services that are designed to provide them with ongoing personal care, housekeeping assistance and health or support services. Conversely, mothers with disabilities, like all mothers, are expected to be providers of services to their partners and children. In this article, I examine the contradictions and tensions embedded in disabled mothers’ relations of care, with a particular focus on the ways that barriers embedded in public home care service delivery complicate disabled mothers’ abilities to provide care. I find that home care policies operate in ways that assume that disabled women will not, perhaps even should not, fill gendered partnership or mothering roles. In turn, this can cause problems for these women in terms of providing care, of achieving adequate mothering and occasionally, of maintaining custody of their children.
Article Full Text at Taylor & Francis Online
Malacrida, C. (2007). “Negotiating the Dependency/Nurturance Tightrope: Dilemmas of Disabled Motherhood”, The Canadian Review of Sociology, 44:4, 469-493.
Normative femininity offers mothers a tightrope of nurturance and dependency. On the one hand, good mothers should be dependent through a relationship with a male provider. Conversely, they should provide nurturance through active, involved and expert mothering. This tightrope poses challenges to women with disabilities whose dependency on male partners can bring vulnerability to abuse, while dependency on the state can result in poverty and surveillance. This article explores the dilemmas disabled mothers face, reconciling their position of dependency against their children’s need for nurturance. Complicating negative conceptions of dependency, many women described how some relations of dependency provided them and their children with positive networks of support.
Malacrida, C. (2006). “Contested memories: efforts of the powerful to silence former inmates’ histories of life in an institution for ‘mental defectives’”, Disability & Society, 21:5, 397-410.
This paper discusses the barriers encountered in undertaking an oral history project with survivors of a total institution for ‘mental defectives’ in the province of Alberta, Canada. Powerful social actors were able to bar access to survivors through legal guardianship orders, and to make access to the institution and its grounds to publicly archived materials quite prohibitive to the researcher. In addition to overt efforts on the part of powerful social actors to block the project, concerns about the potential to discredit survivor narratives led to changes in the research design. Specifically, research and literature about the ‘acquiescence’ of individuals with intellectual impairments led the researcher to broaden the sources for this history as a preemptive strategy. Despite these barriers, survivors of the institution provided a rich and powerful testimony to the brutality of institutionalization, and provide us with an emancipatory history from the perspectives of those most oppressed by disability policies and practices.
Article Full Text at Taylor & Francis Online
Malacrida, C. (2005). “Discipline and dehumanization in a total institution: institutional survivors’ descriptions of Time-Out Rooms”, Disability & Society, 20:5, 523-537.
This article reports on interviews with 21 institutional survivors who lived until the mid- to late-1980s in a total institution for the ‘training and care’ of ‘mental defectives’ in Alberta, Canada. The focus in on survivors’ descriptions of ‘Time-Out Rooms’, used to discipline unruly and escaped inmates. Foucault’s theories about the disciplinary properties of modern society, the use of the gaze, technologies of the self and scientific discourse are both supported and complicated by survivor narratives. In addition, the work of Erving Goffman is examined in terms of the process of dehumanization in total institutions. Ties between institutional practices and eugenics are speculated upon.
Article Full Text at Taylor & Francis Online
Morita, K. (2001). The Eugenic Transition of 1996 in Japan: From law to personal choice. Disability & Society, 16(5), 765–771.
Morita discusses changes that occurred in Japan with the Eugenic Protection Law in terms of eugenic practices. This law had two aspects: it was aimed at preventing the birth of people with specific impairments, and limited women’s access to abortions apart from specified reasons. As a result of this law, the only legal way to terminate a pregnancy was to appeal to the portion of the law regarding the inheritance of “bad genes”. Morita argues that the 1996 amendment resulted in the end of a certain form of eugenic ideology that subjected disabled people to sterilization. However, new eugenic practice in the form of serum screening appeared, resulting in some disabled fetuses being aborted before birth. While it may seems that there is conflict between a woman’s right to have an abortion and a disabled person’s right to life, Morita argues that this is not the case. The discussion regarding screening and disability rights raises a dual dilemma for women with disabilities. This article also discusses the attitudes toward prenatal screening, claiming that the crucial influence on attitudes comes from activities of parents with disabled children.
Nelson, R. M. (1999). Sterilization of Minors with Developmental Disabilities. Pediatrics 104:337-341.
The American Academy of Pediatricians (AAP) discusses the role of pediatricians in making decisions involving the sterilization of minors with developmental disabilities. They suggest that pediatricians may have a role in providing support for some individuals with developmental disabilities who desire to be parents. Further, they list examples of inappropriate requests for sterilization. They argue that sterilization is not a good solution when dealing with characteristics of sexual maturing (for example, menstrual hygiene), to decrease of sexual aggressiveness or prevent of sexual abuse. Rather, they argue for educational programs, training, and less permanent means of contraception. AAP offers a list of recommendations for pediatricians on this matter. Pediatricians should focus on interventions less radical than sterilization, and they should advocate for the least permanent and intrusive method of contraception with the lowest risk for the patient. Further, AAP encourages pediatricians to familiarize themselves with the resources in the community, (e.g. education and counselling). Also, they suggest that pediatricians should involve their patients with developmental disabilities in decisions about reproduction.
Park, D. C. & Radford, J. P. (1998). “From the Case Files: reconstructing a history of involuntary sterilisation.” Disability & Society 13 (3). 317-324.
This paper examines the defining factors that called for the sterilization of ‘mental defectives’ through the examination of case files of the Alberta Eugenics Board. Besides alleged medical conditions, people who were affected by these policies were also facing what were considered to be behavioral difficulties. Additionally, the affected people often lacked family support. Although this paper presents human face to historical events, it does not give voice to individuals. Rather, it depicts complex social attitudes, beliefs, and norms that drastically affected the lives of many. This paper elaborates on the moral rationale behind eugenic practices that was offered by professionals involved. The authors argue that historical events such as eugenic practices can only be understood within wider political, cultural, and social context.
Radford, J. P. (1994). Eugenics and the Asylum. Journal of Historical Sociology, 7(4), 462–473.
Radford responds to Trent’s (1993) article which presents sterilization as solely an institutional control measure. Trent argues that eugenic motives were not the most crucial drive behind the practices of sterilization and segregation, but that superintendents used the sterilization of disabled people as a way to control population growth, preserve their professional privileges and authority, and maintain social control. Radford offers a detailed critique to Trent’s arguments and provides a different framework for understanding of eugenic practices within asylums. He states that Trent fails to consider the tensions between superintendents’ desires and what they were obliged to do, and instead, assigns all the decision-making authority to superintendents. Radford argues that asylums and superintendents who were in charge in those institutions had to respond to external agendas. Furthermore, Radford suggests that it is somewhat dangerous to neglect the broader social context, as it allows it to be considered insignificant. Instead, Radford frames eugenic practices within a modernist ideology characterized by classification, measurement, and diagnosis. Finally, he states that Trent’s analysis minimizes the influence of broader structures which then provides us with an inappropriate understanding of these social practices.
Rapp, R., Heath, D., and K.S. Taussig. (2001). “Genealogical Dis-ease: Where Hereditary Abnormality, Biomedical Explanation, and Family Responsibility Meet.” Pp. 384-409 in Relative Values: Reconfiguring Kinship Studies, edited by S. Franklin and S. McKinnon. Durham: Duke University Press.
This chapter explores how people who are affected by some syndromes that are defined within genetic framework (e.g. Marfin’s or Down Syndrome) build relationships which can be understood in terms of kinship. Bearing in mind perils that originate from eugenic ideology, but also taking into account the development of genetics, the authors discuss practices that stem from assumptions regarding shared heritable genetic condition. A large part of this text discusses relationships within societies, organizations, and support groups that gather people with certain genetic traits. This chapter argues that the language and practices of kinship penetrated relationships among people who share the same condition, as well as among their families, giving them the sense of community and shared identity.
Saltonstall, B. (2007). Mothers Raising Daughters with Cognitive Delay: Reflections on Menarche & Menstruation. Women’s Health & Urban Life, 16(1): p. 41-60.
Saltonstall’s research explores the experiences of four mothers dealing with their disabled daughters’ transition into menstruation. The study was conducted in the United States and involved semi-structured interviews with women raising daughters with intellectual disabilities in order to grasp their understandings of this transition and the changes associated with it. Interviewees had a chance to propose topics and themes that would be discussed. The findings suggest that preparation and planning regarding menstruation cycles play an important role in these moments of transition. Fertility is one important aspect when it comes to the menstruation cycle that triggers different emotions and thoughts. Even though the mothers that were interviewed had access to both private and public resources, they discussed a lack of support regarding this matter. This study posits that educational and medical settings could provide support and resources about menstruation for parents and women with intellectual disabilities, and challenge stigmas regarding disability and female sexuality.
Stainton, T. (2003). Identity, difference and the ethical politics of prenatal testing. Journal of Intellectual Disability Research: JIDR, 47(Pt 7), 533–539.
Stainton explores the role of identity and moral status of the fetus in relation to debates on intellectual disability. Stainton focuses mainly on the issue of prenatal screening, which he finds to be the most critical factor in ethical discussions on disability. He argues that arguments both in favor and against prenatal testing presume that there is no moral status attached to the fetus, and he finds this assumption to be false. Stainton also considers the question of how and whether disability can be seen as an identity-constituting characteristic. Current debates on prenatal testing have commonly focused on whether this practice has any implications for those currently living with a disability; one argument, known as the “expressivist argument”, claims that the elimination of fetuses with disabilities implies a negative judgment about the worth of those who live with a disability. Stainton suggests that debates about prenatal screening have to be extended beyond this “expressivist argument,” and he provides a framework for analysis and clarification of prenatal testing based on the idea that identity is socially constructed, relational, and political.
Stehlik, D. (2001). A Brave New World?: Neo-Eugenics and its Challenge to Difference. Violence Against Women, 7(4), 370–392.
Stehlik examines the history of the eugenics movement and its influence in Western Australia. She links current practices in genetics with past experiences by exploring metaphors of segregation and surveillance of women with disabilities. She discusses discourses of eugenics, institutionalization, and motherhood in relation to what she calls “corporate/neo-eugenic discourse”, which aims to impact the lives of people who are seen as different. Stehlik highlights issues of surveillance and idealized motherhood, which she finds to be oppressive to all women. Futhermore, Stehlik argues that families in Western Australia are under constant surveillance, and that surveillance can be seen as a narrative of violence similar to that of eugenic practices. Finally, she argues that reflecting on the past allows us to better understand the power of these discourses and enables us to form resistance to the trend of eliminating difference through neo-eugenic discourse.
Stote, K. (2012). The Coercive Sterilization of Aboriginal Women in Canada. American Indian Culture and Research Journal, 36(3), 117–150.
Stote’s piece is one of the few articles concerning the coercive sterilization of Aboriginal women in Canada. This article draws on previous research which indicated that Aboriginal women were disproportionately targeted by eugenic practices. Stote provides a historical and materialist critique of these practices, and argues for the importance of understanding eugenics within a broader context, particularly that of colonialism, the oppression of women, and the denial of indigenous sovereignty. She also considers the capitalist mode of production and its influence on these policies. Stote argues that coercive sterilization should not be seen as an isolated case of abuse, but as one of many policies that targeted Aboriginal peoples to appropriate their land and resources by reducing their numbers. Stote explains that coercive sterilization was similar to past governmental Indian policies and that it served the political and economic interests of the Government of Canada.
Taussig, K.S., Rapp, R., and Heath, D. (2003). “Flexible Eugenics: Technologies of the self in the age of genetics.” Pp. 58-76 in Genetic Nature/Culture Anthropology and Science Beyond the Two-culture Divide, edited by A. Goodman, D. Heath, and S. LIndee: University of California Press.
This chapter on flexible eugenics draws on an ethnographic study of knowledge production regarding genetic abnormalities and genetic testing. Drawing on Foucault’s concept technologies of the self, the authors define flexible eugenics as including “technologies of the self through choosing and improving one’s biological assets” (p.65), or the intersection where “long-standing biases against atypical bodies meet both the perils and the possibilities that spring from genetic technologies” (pg.60). The authors use the concept of flexible eugenics to examine practices observed at the Little People of America National Conventions in 1997, 1998, and 1999, and discuss both biomedical and social technologies. The conventions provided the authors an opportunity to include in their collaborative study various parties: patients, their families, advocates, and also genetic counselors and professionals in the field of biomedicine. This chapter emphasizes the role of patients, as well as their families, in production of knowledge about dwarfism and skeletal dysplasia in the field of genetics.
Tremain, S. (2010). “Biopower, Styles of Reasoning, and What’s Still Missing from the Stem Cell Debates.” Hypatia, 25:577-609.
In this article, Tremain discusses some of epistemological and ontological assumptions behind research on human embryonic stem cells (hESC). Most current discussions have focused on the ethical aspects of hESC, and attempt to navigate further research by considering its ethical implication. However, Tremain turns to more fundamental questions; she explores claims about impairment that are taken for granted within stem cell research, and elaborates on how discursive practices regarding research on stem cells lead to construction of impairment. In her research, Tremain draws from the work of Michel Foucault on knowledge-power, as well as Ian Hacking’s concept of styles of reasoning in order to strongly defend the claim that impairment is not a natural or biological human characteristic.
Trent, J. W. (1993). To Cut and Control: Institutional Preservation and the Sterilization of Mentally Retarded People in the United States, 1892-1947.Journal of Historical Sociology, 6(1), 56–73.
Trent argues that institutional superintendents who supported eugenic practices between 1892 and 1947 were influenced by several external factors, not only by eugenics. He puts forward that sterilization was not implemented so much for its explicit purpose – in order to stop procreation – but rather to maintain stability of institutions and to preserve professional privileges. Trent does not argue that the eugenics movement did not influence superintendents’ interest in segregation and sterilization. Rather, he suggests that eugenic movements cannot fully account for the role that institutions play in the procedure of sterilization and segregation. Trent points out that most superintendents were physicians and that they used medical sterilization to reaffirm their authority and ensure their positions within those institutions. Those superintendents often drew upon three justifications for their sterilization practices: to maintain an institutional order that granted them with great autonomy and authority, to provide eugenical control, and to control the reproduction of particular groups of people. Trent points out that “the most effective social controls are those which give the appearance of day-to-day care” (p. 71). He notes that such forms of authority and social control were particularly effective as they became routinized, ordinary, and self-regulating.
Wahlsten, D. (1997). Leilani Muir versus the Philosopher King: Eugenics on trial in Alberta. Genetica, 99(2-3), 185–198.
In this article, Wahlsten discusses the social and historical circumstances surrounding the enactment and endurance of the Alberta Sexual Sterilization Act, which was in place from 1928 to 1972. Wahlsten considers some of the reasons why Alberta was particularly “efficient” in the implementation of its eugenic laws. The long serving chairman of the Eugenics Board, Dr. John A. MacEachran worked closely with those in power and had a strong political influence at the time. MacEachran advocated for the vision of perfect humanity, which was influenced by some philosophical doctrines. This article provides a particularly detailed overview of the case of Leilani Muir, who was sterilized in 1959. Muir’s case for wrongful sterilization went to trial in 1995, and in the following year the court ruled that Muir was wrongfully sterilized and awarded her damages of $740,780 CAD and legal costs of $230,000 CAD. Wahlsten also provides details on the practices of the Alberta Eugenics Board, and provides a compelling argument against the legality of the Board’s actions. He concludes by suggesting that the eugenics program in Alberta was not based on biological grounds, and that in fact low intelligence was not the prime focus for these practices. Rather, certain children were targeted because of the lack of support of their families, either because their families were disintegrated or deeply impoverished.
Walmsley, J. (2000). Women and the Mental Deficiency Act of 1913: citizenship, sexuality and regulation. British Journal of Learning Disabilities 28. 65-70.
Through an examination of the Mental Deficiency Act of 1913, this article looks at how early twentieth-century legislation in the UK contributed to the construction of mental deficiency. Walmsley focuses on how the regulations deprived women of citizenship, given that they were disproportionally affected by this legislation. After examining the legislative framework and practices that were effective at the time and taking into account two case studies, Walmsley comes to the conclusion that institutionalization of women was guided by motivation to regulate their sexual behaviour. Furthermore, the factors that played an important role in deciding whether women would be detained in institutions included the following: social status of a person, poverty, moral worth, respectability of the family, and employability. By demonstrating how reasons other than women’s intellectual capacities greatly affected decisions regarding their lives, Walmsley contributes to the discussion of rationale behind the construction of mental deficiency.
According to the medical profession the direction and scope of reproductive services such as IVF and pre-natal screening are based on solid evidence; the evidence indicates these are effective and safe services. Moreover, women want them. As a consequence these services are usually presented to the wider community in a positive light with images of ‘successful’ birth outcomes showcasing the importance of their work. Unsurprisingly this has lead to women being expected to take control – from timing a pregnancy to choosing one particular pregnancy over another – they are to improve their lives and the health of their offspring. But are these developments all ‘good’ news? Is it safe to assume the push to achieve better birth outcomes and the concomitant use of prenatal testing automatically improves lives? Could it be the issues raised are causing some lives to become harder? How meaningful, for example, are tests such as amniocentesis and CVS? As the mother of a child with Down syndrome I believe it is important for myself and other women in similar situations to share their lived experience. Perhaps we can illuminate some of the more complex and troubling issues these technological advances have the capacity to create – not only for ourselves – but for all women.
Place F. Motherhood and genetic screening: a personal perspective. Down Syndrome Research and Practice. 2008;12(2);118-126.
Perhaps this essay could become a resource for the page