‘He was a secret’: family narratives and the institutionalization of people with intellectual disabilities

Abstract

This article examines family narratives concerning the existence of an institutionalized family member with an intellectual disability. A research study investigating the experiences of institutional survivors and members of their families in post-World War II Ontario, Canada reveals ambiguous family narratives in which the story of an institutionalized family member with an intellectual disability was absent or uncertain. Secretive family narratives and their impact on family life are discussed from the perspectives of siblings of institutional survivors. Drawing from narrative enquiry literature, the potential repercussions of false or ambiguous narratives on the lives of people with intellectual disabilities are also examined.

Keywords:

• family narratives
• intellectual disability
• secrets
• institutionalization
• ‘storied self’

Acknowledgements

The author would like to thank the study participants who generously shared their family stories, and the two anonymous reviewers who provided helpful comments on an earlier draft of this article.

Notes

1. The term ‘survivor’ refers here to people who were institutionalized. The term has emerged in activist circles as a form of self-naming to describe the experience of enduring life in an institution, and I gratefully borrow its usage from participants in this study.

2. Gender bias in the sibling group is reflective of the general tendency towards greater female representation in qualitative research (Polit and Beck 2008), and of the possibility that gender socialization played a role in men’s unwillingness to participate in a research study which had the potential to evoke strong and difficult emotions (Affleck, Glass, and Macdonald 2013).

3. The confidentiality surrounding the recruitment process for the project mirrors the secrecy of the stories that participants held. The careful process of contacting potential participants is indicative of the sensitive and undisclosed nature of the topic.

4. Pseudonyms are used throughout the text.

5. There are some notable exceptions to the undisclosed nature of Ontario’s institutions. In January 1960, prominent Canadian historian and journalist Pierre Berton visited Huronia (frequently called ‘Orillia’, after the name of the town where it was located), the largest and oldest institution for people with intellectual disabilities in Canada. Berton was accompanying a friend whose son lived at the institution and was returning there after time spent at home for the Christmas holidays. After this visit, Berton wrote a scathing piece, published by the Toronto Star, which exposed the horrific and abusive conditions at the institution. Despite his chilling observation ‘Remember this: After Hitler fell and the horrors of the slave camps were exposed, many Germans excused themselves because they said they did not know what went on behind those walls; no one had told them. Well, you have been told about Orillia’, almost 50 years passed before the last government-run institution in Ontario closed in 2009.

6. The last Ontario government-run institution closed its doors on 31 March 2009.

7. In 2012, two former residents of Huronia, Marie Slark and Patricia Seth, on behalf of those who had lived at Huronia from 1949 onwards, launched a Class Action lawsuit against the Ontario government for mistreatment while living at the institution. This was the beginning of a movement towards a public acknowledgement of the injustices enacted through Ontario institutions. In fall 2013, the Ontario government and the plaintiffs reached an agreement which included financial compensation for former residents. In December 2013, the government offered a public apology to all former residents for mistreatment while under the province’s care.