In the early part of the 20th century, persons with intellectual disability were social pariahs. By some accounts, the ‘feeble-minded’ were moral degenerates and the root cause of society’s ills. ‘Allowing’ them to reproduce was for many, at that time, unthinkable. Eugenic sterilization was legislated and vigorously implemented in many jurisdictions “for the protection and health of the State” (see Buck v Bell, 274 US 200). In Alberta, for instance, 2832 children and adults were sterilized under the Sexual Sterilization Act, which was only repealed in 1972 .
The discourse has changed radically over the past four decades. Today, the right of persons with disabilities, including persons with intellectual disability, to “marry and found a family” is affirmed in the United Nations Convention on the Rights of Persons with Disabilities (2006), which was ratified by Canada in 2010. Furthermore, under Article 23, States Parties are required to take “effective action” to eliminate discrimination, and to render “appropriate assistance” to persons with disabilities in the performance of their child-rearing responsibilities.
The challenge at hand is turning rights and rhetoric into reality for persons with intellectual disability. In high income countries, the number of persons with intellectual disability who have children is thought to be increasing. However, many will not be permitted to raise them, and often for reasons that are beyond their control. The albeit limited available data suggest that over one in three children born to parents with intellectual disability will be taken by child and youth protection authorities and placed permanently out-of-home .
Parents and parenting with intellectual disability
There has been sustained research attention given to the topic of parents and parenting with (mostly mild or borderline) intellectual disability since the 1940s. [For an excellent introduction to the topic see Llewellyn, Traustadóttir, McConnell & Sigurjonsdottir, 2010]. The first generation of research in the field debunked the eugenic myth that if persons with intellectual disability were permitted to ‘breed’ they would produce ‘socially inadequate, likewise afflicted’ offspring. This myth was infamously promulgated by Justice Oliver Wendel Homes Jr. who, in authorising the sterilisation of Carrie Buck, declared that “[i]t is better for all the world, if ... society can prevent those who are manifestly unfit from continuing their kind…” (Buck v. Bell, 274 U.S. 200 (1927)). In Alberta, Canada, this myth was written into the Sexual Sterilisation Act (1928). Specifically, the involuntary sterilisation of ‘inmates’ could be authorised, prior to discharge, to eliminate the “...risk of multiplication of the evil by transmission of the disability to progeny...” (37:5). The evidence shows that most children born to parents with intellectual disability have intelligence quotients in the ‘normal’ range.
There are now over 400 published empirical studies on the topic of parents and parenting with intellectual disability. Researchers have employed diverse systems for classifying and identifying parents with intellectual disability, in line with practices in their country of origin, yet the findings from this body of research are remarkably consistent. One consistent finding is that parents with intellectual disability are diverse with respect to parenting skills: intellectual disability per se is a poor indicator of parenting capacity . Another consistent finding is that parents with intellectual disability can learn parenting skills and remedy perceived parenting deficiencies when instruction and assistance is matched to their learning and support needs .
In view of this research, the question is how can the all but systematic removal of children from parents with intellectual disability be explained? One potentially contributing factor is the clustering of other ‘risk’ or vulnerability factors. Mothers with intellectual disability are, for example, substantially more likely than mothers without intellectual disability to have been maltreated in their own upbringing, to suffer mental health issues, and to have few social supports . Another contributing factor is systemic discrimination. The out-of-home placement of children born to parents with intellectual disability is attributable, in large measure, to a pervasive, prejudicial and empirically flawed assumption of inherent and intractable parenting incompetence, and a lack of suitable parenting support/ family preservation alternatives (i.e., services equipped with the knowledge, skills and mandate required to render appropriate assistance) .
Any meaningful definition of full inclusion for persons with intellectual disability must include opportunity to meet potential partners, form lasting relationships, and raise children of their own. There is growing awareness that the opportunity for persons with intellectual disability to do so is restricted by systemic discrimination. Yet currently, Australia is the only country that has a federally funded national strategy to build systems capacity to support parents with intellectual disability and promote a healthy start to life for their children (see www.healthystart.net.au). This national strategy is designed to promote knowledge exchange and implementation through the development of multi-disciplinary and cross-sector networks, practitioner training, and the dissemination of evidence-based parenting education and support strategies and resources. There are also some promising developments in other countries, including but not limited to the United States (see http://achancetoparent.net/) and Sweden (see http://www.lul.se/sv/Kampanjwebbar/SUF-Kunskapscentrum/In-English/
Wahlsten, D. (1997). Leilani Muir versus the Philosopher King: Eugenics on trial in Alberta. Genetica, 99, 185‑198.
McConnell, D., Feldman, M., Aunos, M., & Prasad, N.G. (2011). Parental cognitive impairment and child maltreatment in Canada. Child Abuse and Neglect, 5, 621-632.
IASSID SIRG on Parents and Parenting with intellectual disabilities (2008). Parents labeled with intellectual disability: position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities. Journal of Applied Research in Intellectual Disability, 21, 296-307.
Wade, C., Llewellyn, G., & Matthews, J. (2008). Review of Parent Training Interventions for Parent with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 21(4), 351 – 366.
Feldman, M. A. (2002). Parents with intellectual disabilities and their children: Impediments and supports. In. D. Griffiths & P. Federoff (Eds.), Ethical dilemmas: Sexuality and developmental disability (pp. 255–292). Kingston, NY: NADD Press.
McConnell, D., Llewellyn, G., & Ferronato, L. (2002). Disability and decision-making in Australian care proceedings. International Journal of Law, Policy and the Family, 16, 273-301.
Llewellyn, G., Traustadottir, R., McConnell, D., & Sigurjonsdottir, H. (2010). Parents with intellectual disabilities. Past, present and futures. Chichester, West Sussex: Wiley-Blackwell.