Newgenics in Action
While it is easy to trace the history of Alberta’s eugenic policies and practices, newgenics can go unnoticed. Newgenic practices are often both medical and moral, which makes them difficult to challenge. For example, Alberta has full medical insurance for all citizens, and prenatal testing is routinely offered as part of normal pregnancy care, making it seem like a routine and responsible thing to do. Unfortunately, prenatal screening cannot prevent most disabilities , and some argue that attempting to erase traits like Trisomy-21 (Down Syndrome) that are detectable through genetic screening simply adds to the social stigmatization of disabled people [2, 3].
Disabled people – particularly people with intellectual or profound physical disabilities – face passive newgenics through social isolation, preventing them from participating in mainstream society. Segregated (or ‘Special’ education) is less formal than the institutions of the eugenic era, but special schools and classrooms keep disabled children and youth from socializing and building relationships with others. This kind of separation is also recognizable in ‘day programs’ or ‘sheltered workshops’ that are extremely effective at sequestering disabled people . A lack of affordable and reliable transportation often means that disabled people are not able to leave their homes except to attend sanctioned and chaperoned events. Group homes and supportive living arrangements often lack privacy and many have restrictive rules about dating, sexuality or pornography use. Indeed, in many group homes, rooms are not lockable and entertaining potential sexual partners in one’s room is forbidden . The newgenic effects of restricted privacy and space are pervasive and oppressive. They often are couched in terms of protectionism, where fears of vulnerability or inappropriateness cause parents, workers and guardians to ‘protect’ disabled people from learning about, experiencing and mastering their own sexuality 
Newgenics is also expressed in Canada through the absence of policies and programs that might support disabled parenting. Canadian policy treats disabled people as individuals, ignoring their roles as partners or parents. For example, in Alberta, disabled mothers receiving personal care cannot ask their workers to provide child care unless the child is disabled, so a women who is supported in dressing and feeding herself cannot obtain those services for her child [7, 8]. Gaps like this leave mothers vulnerable to charges of ‘negligence’ and as a result contribute to the reality that when disabled people do have children, they are often scrutinized more closely than able-bodied parents . In Canada, disabled parents have been discriminated against in custody hearings , and in some cases they have even been denied custody of their children at birth because authorities assume disabled people ‘cannot’ be parents.
While social isolation and disability policies show how newgenic ideas permeate today’s society, there are also larger issues of social attitudes that discriminate, especially against people with intellectual disabilities and their desires for reproductive information and opportunities. Parents or guardians often infantilize disabled people (as the photo at right illustrates), and assume that they are not mature enough to have desires or understand sexuality. Furthermore, while they may not discourage relationships, often guardians or parents do not help facilitate these relationships either. These attitudes negatively affect the ability of people with intellectual disabilities to get the information that they need to make good choices.
In addition to inadequate supports in policy, newgenics includes actual interference with disabled people’s capacity to reproduce. This can include lack of information – or worse – misinformation about sexuality, as well as involuntary or not-fully-informed use of contraceptives. It can even include sterilization which occurs under the guise of caregiver convenience or pain reduction for disabled women (See Sexuality: Now).
Examples of Newgenic Attitudes in People’s Stories
Janet Williams is a 34-year-old woman who was diagnosed with depression when she was 13 years old. Her husband also lives with depression and schizoaffective disorder. They have two daughters, ages 7 and 10. The couple met in a care facility, and knew that they wanted children as soon as they got married. However, they were often told by medical staff and support workers that because of their mental health issues, they should both be sterilized.
Interviewer: So motherhood begins with, you know, dating and meeting somebody and making decisions about whether or not you…
Janet: Yeah, I wanted to have kids. When we got married we wanted to have a family. We were told by everybody that we should get sterilized.
Interviewer: That’s the question, yeah.
Janet: Yeah, “You guys shouldn’t be having kids. You guys can’t take care of kids. You shouldn’t be parents.”
Interviewer: So who’s “everybody” in that?
Janet: Support workers, our doctors, our caseworkers, um, at that time it was the Adult Day Program and it was psychiatric nurses and doctors and everybody. People in the care center, “You guys can’t have kids. You shouldn’t have children.”
Interviewer: Why did they say that?
Janet: They said we couldn’t, we couldn’t, um, we couldn’t take care of them.
Interviewer: So there wasn’t this sort of genetic component as much as?
Janet: No. They said we wouldn’t have the capabilities to care for a family.
Both overt and covert forms of newgenics unfold in the story of this couple. They repeatedly faced the judgment that they were not fit to be parents, and that they do not have the capabilities to care for a family. Janet felt the comments they received in regards to their fitness for parenthood were often dehumanizing. When asked about what medical and support staff thought of their relationship and their starting of family, Janet explains:
Janet: I don’t know what they thought. I don’t think we had the capabilities. I don’t think they thought we had the capabilities of anything like this. I sometimes don’t know if they even really thought of us as real people.
When Janet was pregnant with her oldest daughter, everyone close to her was upset and concerned about the fact that she and her husband were going to have a child. Her pregnancy even caused an official reaction in the care centre she visited, and a meeting was set up to discuss the ‘issue’. However, Janet carried out the pregnancy and demonstrated that she is able to take care of a child. By the time she and her husband had their second child, everyone around them was supportive.
Janet and her husband have hidden the fact that they have mental health problems from their daughters’ friends and schools, as they believe it could change the way they are perceived as parents and affect how people treat their children. Janet does not seek support for her depression, as she does not trust workers and counselors. She is worried about what will become of her daughters if anything happens to her and her husband, as they are struggling to make ends meet because of the restrictions on their funding support that prevents them from earning extra income and building savings.
- Stainton, T., Identity, Difference and the Ethical Politics of Prenatal Testing. Journal of Intellectual Disability Research, 2003. 47(7): p. 533-539.
- Tremain, S., Reproductive freedom, self-regulation, and the government of impairment in utero. Hypatia, 2006. 21(1): p. 35-53.
- McLaughlin, J., Screening networks: Shared agendas in feminist and disability movement challenges to antenatal screening and abortion. Disability & Society, 2003. 18(3): p. 297-310.
- Barnes, C. and G. Mercer, Disability, work, and welfare: Challenging the social exclusion of disabled people. Work, employment and society 2005. 19(3): p. 527-545.
- Hollomotz, A. and T.S. Committee, ‘May we please have sex tonight?’ People with learning difficulties pursuing privacy in residential group settings. British Journal of Learning Disabilities, 2009. 37(2): p. 91-97.
- Hollomotz, A., Learning Difficulties and Sexual Vulnerability: A Social Approach. 2011, London and Philadelphia: Jessica Kingsley.
- Malacrida, C., Mothers with Disabilities: Implications for Theory and Practice, in The Routledge Handbook of Disability Studies, N. Watson, C. Thomas, and A. Roulstone, Editors. 2012, Routledge: New York and London. p. 390-401.
- Malacrida, C., Negotiating the Dependency/Nurturance Tightrope: Dilemmas of Disabled Motherhood. Canadian Review of Sociology, 2007. 144(4): p. 469-493.
- Malacrida, C., Gendered Ironies in Home Care: Surveillance, Gender Struggles and Infantilization. International Journal of Inclusive Education, 2009: p. 1-20.
- Mosoff, J., ‘A Jury Dressed in Medical White and Judicial Black’: Mothers with Mental Health Histories in Child Welfare and Custody, in Challenging the Public Private Divide: Feminism, Law and Public Policy, S.B. Boyd, Editor. 1997, University of Toronto Press: Toronto, Ontario. p. 227-252.