Over the past years, Claudia Malacrida and her team have conducted over 100 interviews with disabled people about their relationships, sexual experiences and the challenges and rewards of their family lives. The stories have come from survivors of institutions, people who were part of the eugenics system in Alberta, disabled parents, and young disabled people today.
It may seem like these groups would have little in common. But as we’ve sifted through their stories and considered the broader picture, it’s become clear that although many things have improved, much remains to be changed. It seems that in some ways the ‘bad old days’ of eugenics have just gone underground, becoming the ‘bad new days’ of newgenics.
The people who have lived in institutions describe the extraordinary efforts of community doctors, social workers, teachers and even religious advisers, who worked to convince their families to send their children away. While the state’s justification for institutionalization was to provide education and care, in reality, the institutions really operated as a form of passive eugenics by locking people away and keeping strict sex-based segregation within the institutional walls.
Our interviews with young disabled people and disabled parents show us how passive newgenics operate today. Young people who live in group homes or supported living arrangements spoke about how they were not permitted to lock their doors or have overnight visitors – in one case, we heard of a young man locked out of his own home because his use of pornography was against his ‘supportive’ roommate’s values.
Other people spoke about how lack of information, or lack of access to transportation or access to the outside world left them isolated, uninformed, and not very well equipped to partner with someone. In a sense, these are just covert ways of keeping people in the dark and out of the reproductive pool, operating under the guise of protectionism.
There is much, much more to be gleaned from people’s stories. These stories are not ‘just’ personal testimonies. Rather, they offer insight into the ways that sexual and reproductive control has worked historically and in the present to limit the relational, sexual and reproductive lives of disabled people.
The eugenics stories we heard come from people who survived life in Alberta’s institutions, many of whom were involuntarily sterilized as part of Alberta’s eugenics program. These stories also expose how passive eugenics, in the form of institutionalization, was another strong form of sexual and reproductive control over disabled people’s relational, sexual and family lives. We also have collected narratives from ex-workers in the institutions, who provide an interesting perspective on eugenic practices in those years. These stories are currently being processed, and we hope to have them posted for readers by late 2015.
Meanwhile, our interviews with young people with a wide range of disabilities that examine how they have learned about sex, what their struggles and successes have been in achieving relationships and sometimes families, are now being posted onto the site. Each of these people’s stories highlight in interesting and diverse ways how barriers – some of them obvious and some them hidden – pose challenges for disabled people in achieving sexual and emotional autonomy – a basic human right.
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