By Erika Dyck, PhD

Summary

Born in 1926, Doreen Befus grew up in Alberta’s infamous Michener Centre, where people designated 'feebleminded' were warehoused. As a teenager Doreen was sterilized without her knowledge or consent as part of the provincial eugenics program. Deinstitutionalized in the 1970s, she became a caregiver, an activist, a writer and an aunt. Her life story, told by historian Erika Dyck in this moving exhibit, forces us to acknowledge Doreen’s patience, resilience and remarkable personal courage in challenging medical and social labels of deficiency.

Introduction

You’ll never make it out in the world, Doreen. You’ll never be able to learn enough to live like a normal person.” I heard this over and over as I was growing up in an institution for the handicapped in Red Deer, Alberta. I wanted to learn how to sew and read better, but I was labelled as being too 'retarded.'

Decision Magazine, March 1990

Doreen Befus’s story unfolds on these pages. Doreen, an orphaned twin of a single-mother, grew up in a series of institutions and spent significant time at the Michener Centre, then called the Provincial Training School for Mental Defectives, in Alberta throughout the 1940s and 1950s. There she was sterilized without her knowledge or consent.

Released from the institution in the late 1960s as part of a growing wave of depopulating mental hospitals, Doreen began a search for her biological family and along the way became a strong advocate for patients’ rights. Earning income caring for children, her detailed diary descriptions of this work show how Doreen began to question the right of the state to decide a woman’s capacity to be a good mother. Doreen’s life experiences offer insight into the plight of former patients who were previously alleged to be unfit members of society.

Reconstructing Doreen’s life, and situating her within the history of mental health institutionalization and subsequent deinstitutionalization not only personalizes this history, but also helps explain the growth of patients’ rights groups and the proliferation of rights-based activism within the community mental health movement. Doreen’s life is remarkable in its own right, but because she kept close records, including a personal diary where she described her daily activities and thoughts, her story also provides a candid set of insights into a former patient’s perspective on this history. Her public profile began to challenge the conventional view that people with such disabilities were genetically inferior and a drain on the public purse. Held at the Red Deer Archives, Doreen’s extensive records are a rare example of a patient-created archival collection.

Early Life

Doreen was born in 1926 to Russian immigrants Dave and Mary Befus who farmed in southern Alberta. Her parents had been periodically estranged, but in early 1926 they reunited and Mary delivered twin girls that December: Ella Glanda (Doreen) and Edna Marie. Ella had two extra toes when she was born and the attending physician removed them within a few days, recommending that the weak infant remain in the hospital for further observation. The family had no funds to pay for the extra care and required government assistance to cover this expense. From birth then, Ella became entangled in the provincial welfare system.

Returning home with her mother at two weeks, Ella continued to require extra attention. Over the next year, Mary and Dave once again separated and the girls were sent to live periodically with their maternal grandmother. Overwhelmed by a lack of money and the burden of children, Mary ultimately decided to put the twins up for adoption. According to another version of the story provided by a former neighbour of the Befus’s, Dave disappeared, and Mary claimed to be a widow who was then “forced to surrender both girls to the Department of the Lethbridge Courts”.

Ink sketch of old-fashioned young girl holding small suitcase

A Norwegian family living in Iron Springs, Alberta, adopted Edna at the age of 22 months. Still unhealthy, Ella was put under the care of the Alberta government as part of the Children’s Protection Act and lived in a number of foster care homes until the age of seven. Her last home was operated by a couple who were reportedly drunk and abusive. Under these circumstances the Department of Public Health transferred the young girl to the Provincial Training School at Red Deer (later renamed the Michener Centre), where she lived for the next twelve years. At the point of admission, the medical superintendent claimed that: “Ella was too much of a grown up name for a little girl” and changed her first name to Doreen. Changing her name was a gesture that further reinforced the power of the state and this doctor over this young girl and her identity.

Ink sketch of large forbidding looking old institution

Despite the lack of a family setting, 'Doreen' recalled her time at the Provincial Training School as a positive one, likely comparing the school to life with her mother and in various foster homes. “I was not unhappy,” she claimed in a 1990’s magazine article. “Reports by the staff described me always laughing and singing, I was well-liked by both staff and residents. I was never ill-treated in fact, the nurses were loving and understanding.” Doreen’s comments are all the more poignant given that she had been sexual sterilized as a teenager at the Michener Centre. She was assessed with an IQ of 55 and anyone with an IQ under 80 was recommended for sterilization. It is quite likely that Doreen did not know she was being sterilized, as individuals considered low-IQ were not necessarily told they were having these operations. Doreen might have been told that she needed her appendix taken out, or she might not even have understood the word or the concept.

When Doreen left the institution she did not spend much time reflecting on her sterilization, but later in a letter to a lawyer she stated that: “at the time we were sterilized it was an accepted fact that we, the patients, had no control over our bodies, and a lot of the patients that were in the Training School had no rights and most of them had no one to speak up for them.”

Deinstitutionalization

ink sketch of 2 smiling women standing together, one on left looks like a nurse

When Doreen was an adult, she became a resident at Deerhome, a provincial facility for adults with disabilities, and was periodically employed as domestic help for rural families in the Red Deer district. Working with families piqued her interest in learning more about her own, and from that point forward, she made a concerted effort to learn about her mother, and her older and twin sisters.  Doreen nonetheless continued to have strong ties with the institutions that she had lived in, and in which she had many friends.

In the late 1960s large-scale Canadian institutions came under pressure to reduce patient populations.  Doreen’s formal discharge into the community was part of this transnational trend.  In the mid-1970s the renamed Training School, the Michener Centre, was home to 2,300 residents, and by 1977 the numbers had dropped to 1,800. Not everyone took up residence in the community, as new facilities were built to house patients as well.

In Doreen’s case, her life outside the institution evolved gradually.  She first moved into a half-way house with a number of other former residents of Deerhome, but after a year she lived on her own, which set her apart from many of her peers who required some help at home or remained in institutional care. She returned periodically to both Michener and Deerhome to see friends and to revisit familiar settings even as she began building new friendships and engaging in new routines in the community.  In doing so, she often encountered friends who were struggling with life on their own, and she tried to help them as they sorted through bus schedules, or tried to make home improvements, or learned how to use the public library system.

Doreen’s willingness to help seems to have given her a sense of independence and pride, which further encouraged her to speak out about the problems that her friends faced.  She wrote to the local newspaper about these difficulties, arguing that the fault lay with a mental health system that failed to ease the transition to community living by providing the companionship and patience that people needed as they grew into their new lives.

Life After the Institution 

ink sketch of smiling woman with pen and paper
newspaper clipping of ad for 1 bedroom suite, pasted onto diary page

In 1976, at the age of 49, having lived in institutions for 42 years, Doreen was released into the Alberta prairie town of Red Deer, whose population was then just over 30,000.  At first she lived semi-independently in a group home with the help of social services, including through regular contact with a social worker, and a variety of public supports.  Three months later, Doreen struck out on her own for the first time in her life, renting a one-bedroom basement apartment, supported through a combination of provincial and federal programs for adults with disabilities.  She commemorated this moment in her diary with a tiny cutting of the classified ad that described her new accommodations:  “1 bedroom suite, refrigerator, stove, includes heat, $290/month.”

Her move triggered a dramatic set of changes in Doreen’s life, not the least of which included living on her own, paying her own bills, becoming an active member in her church, securing appropriate employment, maintaining her social services appointments, cooking, cleaning and assuming a host of responsibilities.  She was familiar with some of these activities, having participated in cooking and cleaning at the provincial institutions as a trainee.  Managing money, however, had only ever been an exercise within the protective walls of the institution, whereas taking public transit, making appointments with social workers, doctors, psychiatrists, and others had never been part of the closely monitored functions of the institution.  On the outside, life was very different and people like Doreen who had spent their entire lives within a carefully structured and supervised environment carried many of their institutionalized habits into the community.  This may be why when Doreen set up her own apartment, she meticulously recorded a list of her entire set of belongings, including notes as to whom had given each item or where she had purchased them and at what cost.  She also kept a page of signatures from all the people who visited her home, including social workers, friends, home care nurses and Canadian Mental Health Association representatives.

Institutional labels, surveillance and social criticism followed people out of the provincial facilities into the community of Red Deer, creating a new set of problems. Former patients now faced a host of practical and psychological obstacles. Those who may have exhibited characteristics of an institutionalized existence, for example requiring extra time at the grocery till, or needing help figuring out a bus schedule, were not necessarily easily absorbed into the community. 

Outside of the walls of the hospital Doreen became an active member of her community, providing child care supports for local mothers, and helping her fellow deinstitutionalized friends and acquaintances as they negotiated the contours of out-patient care, social services, bus routes, bill payments and the rhythms of an independent life. On her own, perhaps more successful than others, Doreen embraced a new phase of life: one marked by social activism and disability advocacy.  Generating strength from her religious convictions, Doreen spent the next twelve years writing letters to editors, dignitaries, and even the Queen, promoting the rights of individuals with disabilities as well as working closely with deinstitutionalized people to help them realize their capabilities.  She stated “when I speak, I hope to change people’s attitudes toward the handicapped from believing in their own abilities. Handicapped people are like everyone else.” Doreen became involved with a variety of organizations, including Alberta Association for the Mentally Retarded, the Epilepsy Association, the Brain Injury Society, the Hearing Impaired Society, and People First. A closer look at her more intimate and immediate responses shows that her activism was not inevitable but rather evolved out of her experiences in the community.  In 1988 the town of Red Deer officially recognized Doreen’s humanitarian efforts and presented her with the Air Canada Heart of Gold Award.

Doreen’s Diary

ink sketch of woman with glasses seated writing at desk in library

Doreen attributed her love of writing to new freedoms associated with life in the community. She participated in literary events at the public library and practiced her writing with help from the group home staff and other community members. These intellectual activities stand in sharp contrast to the absurd IQ measurement that Doreen was assessed with in the institution. Unsurprisingly, given her IQ rating, she was aware that she had not been encouraged or inspired to use her mind when she had lived in the institution.  For the rest of her life Doreen kept careful track of her activities in her journal, wrote countless letters of thanks to the various officials and service representatives she encountered, and became a tireless advocate for individuals who required additional assistance, be that physical, financial, or emotional.

Reading Doreen’s diary, one can trace her daily efforts to bridge the divide between institution and community. On September 1, 1976 Doreen made an entry in her diary to mark the occasion of her first stay in the Group Home.  “I was transferred from ASH Deerhome to the New Group Home in West Park.  As I will have to be on social assistance, welfare is paying my board and room plus meals.  I shall also get spending money.  I shall receive some rehabilitation pay.” From this point forward, she made regular entries describing the social workers with whom she came into contact, the meals she ate at the group home, and the various tasks that she performed to help both the staff and the residents at the home, including preparing meals and cleaning the house.  These entries continued daily as Doreen meticulously catalogued her activities, almost as though she were filling in a chart.

Within the span of a week, Doreen seemed to grow restless and missed some of her friends who remained in the institution.  On September 8 she returned to Deerhome to have coffee with friends. For the next few weeks her entries continued to record her daily activities as she settled into a pattern of cooking, cleaning, attending doctors’ appointments, and returning to the Social Welfare office either to pick up cheques or to connect with her social worker.  Throughout this busy schedule, Doreen often found time to visit friends at the nearby institutions and to help out around the group home, including assisting the other residents in meeting their schedules. 

At the end of September, in a manner that she would later embrace with regularity, Doreen wrote a letter to the editor of the Red Deer Advocate in the hopes that the local newspaper would publish her insights on trying to integrate into the community.  She opened the letter by boldly stating “I would like to say how pleased I am that the government had decided to open up the new group homes out in the community.” In the community “they are given the chance to learn to take on responsibility for themselves like learning to do things in a normal way: taking the city bus to work, go shopping and…also learn to cook.”

Doreen’s early diary entries revealed a mixed set of feelings.  Her comments expressed a blend of pride in her new-found independence, but a pride that was tempered with a dose of caution as she faithfully recorded her every move, as if to report her good behaviour to an invisible reader or supervisor. Although it is possible that Doreen planned to keep her diary for future readers to examine, she does not initially appear to regard it as a secret repository for her innermost thoughts or intimate feelings.  Rather, she diligently wrote in it each day, as if instructed, or as though she imagined that at some point someone might ask her to account for how she had spent her time. This seems a reasonable interpretation of Doreen’s diary.

By early November, however, just over two months after she had arrived at the group home, her entries became more personal and reflective.  On November 7 she recorded:  “I have been receiving a lot of help.  I had run into a few of my own personal problems which is no one’s fault but mine.  It is so nice to have someone to talk to that does know about me.” On in the next page, engaging in more self criticism: “If I reject the help that is available to me I will lose the respect of those who tried to help me plus my psychiatrist…and my relatives….I must try to help myself.” This last segment reads like a well-rehearsed testament to her commitment to independent living, one that health care professionals hoped patients would adopt on their way out of the institution.  In this case, it is unclear whether Doreen was encouraged to accept this view of herself upon exiting Deerhome, or whether she came to this realization on her own.  Her candid reflections, however, underscored the dramatic shift from a collective to an individualized identity.

The Personal Is Political  

ink sketch of strong and serious woman with glasses

By late 1977, although she had only been living in the community for approximately one year, Doreen’s self-perceptions were changing rapidly and her experiences as a “handicapped” individual had become a critical element of her identity.  Her diary grew more and more reflective on the subjects of ability, the right to education, and the value of different kinds of social contributions. She came to question the limitations that had been placed upon people like herself who had been sent to institutions and restrained from engaging in a variety of mainstream experiences. 

This progression from a deinstitutionalized patient to a more confident empowered activist unfolded over the twelve years that she resided in her basement suite. She was politicised by both positive and negative interactions with local organizations and families, including her own.  She worked with family seeking domestic support and did volunteer work with ex-patients who, like herself, were prevented from starting their own families and who struggled to adjust a semi-independent life outside the provincial institutional system.  Both these experiences were significant influences on her emerging political perspective. Shortly after she had been transferred out of the group home, she wrote: “I have gotten to know a lot about myself through the way that other people would never would have taken the time to help me with my problems years ago.  It has been good getting to know just how much we can learn more about ourselves.”

Over the course of her writings in the late 1970s and through the 1980s, she adopted the habit of referring to deinstitutionalized and disabled individuals as “handicappis.” She identified herself as a handicappi, and used the term with pride. Although it usually denoted some kind of mental or physical deficit, Doreen said that any such deficit could and usually was overcome with a wealth of abilities in other areas.  She, for example, prided herself on her abilities to help others, connecting single mothers or deinstitutionalized residents with social workers, cooking meals for her friends, and increasingly, writing letters that attracted media attention and helped to raise awareness about the diversity of abilities within the Red Deer community.

This change in language marked a growing political, and even radical perspective on the rights of “disabled” individuals.  In 1981 she wrote a letter to the University of Alberta forcefully asserting that the “disabled are abled,” and declaring that the “disabled are considering themselves consumers and are willing to show [what] they can do for themselves.” Doreen thus joined a transnational trend in disability rights movements that insisted upon a “people first” perspective in which the individual took precedence over their disability. In a letter to the editor about the poor attendance of inter-denominational clergy at a conference the church and people with disabilities, Doreen lamented that “some clergy have an offensive patronizing attitude which discouraged handicappi people from going to church.” Doreen spoke at this meeting about the time she had spent at the Michener Centre, the lack of spiritual lessons in that environment, followed by a virtual shunning of “handicappi” people from churches in the Red Deer community.  “God accepts these people as people first and handicapped second, why can’t we do the same?” These kinds of public appearances and memorable appeals clearly left an impression on others, but also reinforced Doreen’s own convictions as she continued to write letters to a wider circle of readers and to speak to a variety of community groups.

By the early 1980s Doreen’s writings had attracted attention from others in similar conditions.  In 1981 she received a letter from a woman in Newfoundland who thanked Doreen and subsequently shared her own experiences.  “I was told that I have a learning disability, but I am not letting that stand in my way of doing the things that make me feel good about myself. . . .We have to be strong and fight back with courage and perseverance when anyone tries to discourage us from doing something that will help us help ourselves.” Letters arrived from as far away at Blackpool, UK, from a woman who said she was severely disabled and proud of the fact that she had learned to play the drums and was now in a percussion band. And letters arrived from Alberta, including one from parents of disabled children seeking Doreen advice.

In 1981 Doreen’s work and activism captured the attention of local filmmakers who produced a 25-minute documentary that centred on the life and experiences of Doreen Befus.  The film, “If I Can Do It, You Can Do It,” featured a number of former residents of the Michener Centre, but zeroed in on Doreen’s experiences, which had culminated in a life of independence, activism and community service.  The film dealt with eugenics and the forced sterilization that Doreen and others endured.  “They’d just send you up there and you’d have no say in it,” Doreen told newspaper interviewers concerning her meeting with the Eugenics Board at age 18. The film attracted more media attention and triggered a speaking tour for Doreen in which she visited Alberta’s secondary schools and spoke to students about the value of education, the People First movement, and the sting of discrimination.

For more details on Doreen’s history, you can read a full chapter based on her life in Erika Dyck, Facing Eugenics:  Reproduction, Sterilization, and the Politics of Choice (Toronto: University of Toronto Press, 2013), pp. 143-168