Policy: Now Overview
Examples of Restrictive Policies in People’s Stories
The Alberta Sexual Sterilization Act was repealed in 1972, the British Columbia Sexual Sterilization Act in 1973 (see Policy: Then), and in 1982, Canada was the first country to enshrine Human Rights legislation that specifically took disability into account . However, the key policy protecting bodily and reproductive autonomy for disabled people in Canada is Eve’s Law (E. (Mrs.) v. Eve), a 1986 judgment by the Supreme Court of Canada regarding the potential sterilization of a 24-year-old intellectually disabled woman, Eve.Eve had expressive aphasia, meaning she was unable to clearly communicate to her caregivers. Her mother argued that Eve might “innocently become pregnant” because she was incapable of comprehending consensual sexual relations or the concept of marriage, and she petitioned the court for consent to sterilize Eve by tubal ligation. Ultimately, the Supreme Court of Canada ruled in Eve’s favor, unanimously rejecting Mrs. E.’s requests. Eve’s Law declares that any surgeries on individuals unable to provide consent must be “for the benefit of the person in need of protection and not for the benefit of others”. The judgment goes on to say that, “sterilization should never be authorized for non‑therapeutic purposes…In the absence of the affected person’s consent, it can never be safely determined that it is for the benefit of that person.” .
A critical aspect of the Supreme Court’s ruling was the consideration of Eve’s fundamental right to procreate and not have her body interfered with without her consent. Further, Mrs. E.’s primary argument for her daughter’s sterilization was to save her the “trauma” of pregnancy and giving birth, neither of which could be proven would be more difficult for Eve than for any other woman. Mrs. E. also argued Eve would be incapable of caring for a child, and therefore the onus of raising any child Eve might bear would fall on her. Ultimately, the Supreme Court’s final ruling highlighted that the convenience or wishes of parents, guardians and caregivers cannot trump the individual’s rights to bodily integrity and reproductive freedom.
At the national and legislative level, then, protection of disabled people from tampering with their bodies or enforcing unnecessary surgeries is guaranteed. However, individuals with intellectual disabilities and profound physical and psychological disabilities are often considered incapable of making informed decisions regarding personal care and guardianship, sexuality, and parenthood and family planning. These perceptions can result in many local-level policies taking a distinct tone of protectionism. Alongside this protectionism, individuals with intellectual disabilities are often infantilized through policies and practices that undermine disabled people’s consent, authority, and autonomy. Thus, although parents, guardians and agency workers cannot enforce sterilization surgeries, they can enforce less permanent but nevertheless effective methods of reducing the possibilities of relationship, sexuality and parenthood for disabled individuals under their care or authority (see Newgenics in Action, Sexuality: Now).
In practice, the shift to newgenics may simply mean that eugenics have ‘gone underground’, but it is hard to know because it is much more difficult to track today’s newgenic forms. These newgenic forms include social isolation, lack of information and resources, policies that undermine privacy and autonomy, policies that undermine parenting, court practices that discriminate against disabled parents, and enforced use of birth control, amongst others [3-5]. We need to know more about the restrictions disabled and mentally ill people face in achieving relationships, sexuality and families.
Examples of Restrictive Policies in People’s Stories
Margaret Angus is a 54 year-old woman; she lives with the autoimmune disease dermatomyositis, which affects her joints and muscles, and causes fatigue and limited mobility. She has two children, ages 18 and 20, both of whom were born before her illness occurred. She struggles daily with fatigue and exhaustion and these have had a huge impact on her marriage. She and her husband separated shortly after she became ill, and it seems that her disability was a major cause of their separation. Thus, soon after she was diagnosed with a rare and challenging disease, she also began living as a single mother.
When her children were young, support workers showed extraordinary care in regards to Margaret’s family life and parenthood. While she had support from her family and friends, and the wider community, as well as from her children’s school, she was under constant surveillance in regards to finances. When her son decided to get a job, the financial support Margaret was receiving was jeopardized. The funding model reduced her income because a member of a household was now employed. To maintain her income, her son needed to move out, which forced the family to reconfigure their everyday life and caused distress to them all. Margaret was denied the invaluable support she enjoyed by having her family together. She explains:
Margaret: Because he’s my helper, he’s my…He’s the person that brings the water in. I can’t carry the water in. He’s the person that takes the boxes. Um, mows the lawn for me. The dog runs away, like I can’t lift the dog. I can’t, I can’t take apart my patio table. I can’t do that. There’s so many things I can’t do.
Margaret’s son not only assists her in chores, but he is also an invaluable emotional support.
Margaret: When he’s here, you know…
Interviewer: Life is better.
Margaret: Oh life is better. He picks me up if I’m doing too much and he carries me into the den and he goes, “Now you go sit down.” (laughs) He works for a call centre, on the internet support things. You know, he’s just such a good kid. But he can’t be here.
Once an energetic working mother who was actively involved in her community, Margaret is now faced with social isolation and loneliness. When her son moved out, the isolation Margaret faced became even greater. Margaret’s experience, in which her family was not able to stay together due to restrictive policies, demonstrates that these policies do not necessarily take into account the complex relations of interdependency that disabled mothers experience. Support programs for persons with disabilities assume that people with disabilities should live in poverty and furthermore, deny persons with disabilities the right to family. Margaret explains how the change affected her health, and moreover, how it influenced her son’s life as well.
Margaret: Because now I have to do stuff that he would do for me. He’s paid more money out there then he would be. So he’s not saving to go to university, which is what he wants to do.
The fact that he needed to leave the family home forced Margaret’s son to forgo his education, and her daughter to reconsider her future choices in regards to her education and future career. The limitations attached to Margaret’s financial assistance impact the lives of all of her family members. The policies that frame financial assistance do not provide sustainable support for parents with disabilities, and they fail to anticipate the adverse impact they might have on persons with disabilities and their families. Margaret and her family have faced many challenges since her disease was diagnosed; however, she believes that the fact that she has a disability has made her children compassionate and strong.
- Government of Canada. Human Rights and Disabilities. Canadian Heritage 2014 [cited 2014 May 1]; Available from: http://www.pch.gc.ca/pgm/pdp-hrp/canada/abl-eng.cfm
- The Supreme Court of Canada. E. (Mrs.) v. Eve,  2 S.C.R. 388. Judgments of the Supreme Court of Canada 1986; Available from: http://scc-csc.lexum.com/scc-csc/scc-csc/en/item/170/index.do
- Richards D.A. Watson S.L. Monger S. & Rogers C., ed. The Right to Sexuality and Relationships. The Human Rights Agenda for Persons With Intellectual Disabilities, ed. F.O. Dorothy Griffiths, & Shelley L. Watson. 2012, NADD Press: Kingston, NY. 103-128.
- Family Rights Group. Supporting Disabled Parents: Social Care Services for Parents and Adults in a Parenting Role. 2009 April 20]; Available from: http://www.frg.org.uk/pdfs/6.%20ssfor%20disabled%20parents.pdf
- Carlson, G., M. Taylor, and J. Wilson, Sterilisation, Drugs Which Suppress Sexual Drive, And Young Men Who Have Intellectual Disability. Journal of Intellectual & Developmental Disability, 2000. 25(2): p. 91-102.