‘We’re strong human beings’

Disability project will share an untold story of Alberta’s past

At first glance it’s a dark history: people with developmental disabilities in Alberta were forcibly institutionalized sterilized and widely regarded as “defective” for much of the 20th century. Yet when Jennifer Stewart looks back on this history the soft-spoken actor and disability activist sees a story of human strength. “We’re strong human beings” says Stewart 33. “These people came before us [and] went through all the crap for us to have a better life in the community — to be able to celebrate disability.”

Wayne Colban lived through much of that history. At 67 Colban is a striking character. He’s got a straggly white beard on his chin a faded baseball cap on his head and a mischievous grin on his lips. As a child Colban was sent to an institution in Red Deer where he spent 22 years of his life. Most of his memories of the Provincial Training Centre (now called the Michener Centre) aren’t happy ones. “You got locked up” in a quiet room (or “QR”) as punishment for breaking rules — and the rules were very strict he recalls. “Really bad.” Colban says he eventually ran away and moved to Calgary where he now lives in a group home. “I still know my history” he says.

It’s life experiences like these that the Vocational and Rehabilitation Research Institute (VRRI) — a disability service and research agency in Calgary — wants to capture for its ambitious It’s My History Too! project. Inspired by the province’s 2005 centennial celebrations researchers at the VRRI decided to compile a comprehensive history of people with disabilities in Alberta — a “a history that has not been told from the perspective of persons with developmental disabilities” says VRRI research director Nilima Sonpal-Valias.

To capture this untold story the VRRI wants to interview people like Colban and Stewart collecting personal stories from people who have lived the history. “I’m sure we’ll get facets of information angles of information that we can only imagine” says Sonpal-Valias. “The potential of this project is just absolutely groundbreaking.” The project has caught the attention of the Glenbow Museum and the VRRI is hoping to eventually exhibit its findings in the Glenbow’s Mavericks gallery. It’s a fitting venue as the VRRI wants to use the project to highlight “mavericks” who have improved life for Albertans with disabilities.

THE JOURNEY TO INCLUSION

A century ago life for Albertans with disabilities was very different than it is today. Eugenics — the idea that “defective” people shouldn’t be able to have children — had many powerful proponents in Western Canada. Even social reformers like Nellie McClung supported sterilization of people with developmental disabilities. Next door in Saskatchewan NDP founder Tommy Douglas wrote his master’s thesis on “subnormal families” and eugenics suggesting that people who were “mentally defective” were “morally subnormal.”

Alberta built its Provincial Training School in 1923. The people who lived there weren’t allowed to find jobs outside the institution or lead their own lives. “People in institutions are disenfranchised marginalized and removed from the responsibilities of everyday life” explains Dorothy Badry a social work professor at the University of Calgary. “The community is failing to meet the needs of the person by institutionalizing them rather than offering them equal opportunity as a human being to enjoy the dimensions of community life like the rest of us do.”

It’s the Provincial Training Centre’s harsh rules and punishments that stick the most in Colban’s memory. He recalls being locked in the quiet room with nothing but a mattress — and sometimes even less. “Sometimes it was just a plain floor to sleep on” he says. Colban also remembers having to ask permission to go to the bathroom.

In 1928 five years before Nazi Germany passed its sterilization law John Brownlee’s United Farmers of Alberta government passed the Sexual Sterilization Act which allowed the province to sterilize people with disabilities. The province established a four-person Alberta Eugenics Board to approve sterilization cases. Almost 3000 Albertans were sterilized over the next 43 years — many without consent.

The 1970s brought significant changes. The Sexual Sterilization Act was revoked by Peter Lougheed’s newly elected Conservative government in 1972. Colban and many others left the Provincial Training School and moved into the community where they could freely live and work. “It’s changed a lot” says Stewart. “It changed from being institutionalized to being in the community and being normal and now it’s changing again where we’re celebrating being different and celebrating disability culture and pride.”

After leaving Red Deer Colban worked for more than 20 years washing dishes at a Calgary steak and pizza house — a job he never could have held while living at the institution. Now retired he’ll be leaving on a vacation to Mexico next month another opportunity he never would have had in Red Deer. “That’ll be an experience for me because I’ve never been there before” says Colban.

The history of people with disabilities in Alberta is one of “systemic discrimination” says Sonpal-Valias. However she warns against dwelling exclusively on the ugly parts of that history as there have been many positive steps forward. “Personally speaking I think the history is what the history is” says Sonpal-Valias. “We embrace it for its positives and its negatives. Its positives of course we build on and are proud of. Its negatives are those that we learn from.” The VRRI wants to share both the good and bad chapters of that history.

KEEPING UP THE ADVOCACY

Stewart speaks quietly but confidently as she recalls what it was like to grow up with a developmental disability in Calgary. “I was ashamed of it” she says. “I didn’t want anyone to know.” At school other kids made fun of her and called her names like “retard” and “stupid.” “I went through that” she says. Today however she looks at her disability very differently. “It’s part of who I am…. If I didn’t have the disability that I have I wouldn’t be able to have access to the people in my life that I have” she says referring to the many friends she’s made in the disability community. “It’s changed for me. Now I’m able to celebrate who I am as a disabled person.”

However Stewart knows the fight against discrimination is far from over. She’s involved in a social justice group called the Disability Action Hall that pushes for disability-friendly policy changes in government. The group was instrumental in lobbying for Calgary’s low-income transit pass. The Action Hall is also pushing for fairer living allowances for people with disabilities. (The current monthly allowance from the province is $1088.) “People still have that view of ‘what are you complaining about? You get free money every month’” says Stewart. “And there’s still that view of ‘they need to be looked after.’ Those people.”

These attitudes however are shifting because of “a lot of hard and dedicated work by parents and professionals in the disability field” says Badry who has a 19-year-old daughter with a rare metabolic condition. Badry says her daughter Krista is “living as fully as possible” — thanks largely to people in the disability community. However Badry says people with disabilities still face barriers. “We always need to continue to advocate” she says. “There are cases where people with disabilities continue to be subject to violence to abuse to an inability of society sometimes to meet their needs.”

The VRRI’s history project Badry says will carry on that advocacy. “The history of people with disabilities just like the history of any other marginalized group is never fully told” she says. “A project of this nature is critical because it continues to raise the voice and influence future responses to this population.”

For more information on It’s My History Too! go to www.imht.ca. Albertans can nominate mavericks in the disability community until April 30 and vote on those mavericks between June 1 and July 18.

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A CENTURY OF DISABILITY LIFE IN ALBERTA

As part of the It’s My History Too! project the Vocational and Rehabilitation Research Institute (VRRI) has created a historical timeline to show how life has changed for Albertans with developmental disabilities. The timeline is written from the perspective of people with disabilities. It’s written in simple plain language so people with and without disabilities can understand it. The term “people with developmental disabilities” has been shortened to “people with DD” for brevity.

The following is an edited version of the timeline. (The entire timeline is available at www.imht.ca.)

1900 — The idea of eugenics begins. People have a new idea. They say: “It is better that nobody has a disability.” They think that only people with disabilities have babies with a disability. If men and women with DD have no babies there will be no more people with DD. This idea is called eugenics.

1919 — Act Respecting Mentally Defective Persons. This Act says that the government can make us live in an institution. Our parents may want us to live at home. But we have to go to an institution to live there. There is no institution in Alberta at that time. Some of us are sent to Manitoba to live in an institution. We do not see our family very much.

1923 — The Provincial Training School [in Red Deer] opens. (It is now Michener Centre.) Here we will learn all kinds of skills. Some of us go there when we are very young.

1928 — Sexual Sterilization Act. The eugenics idea is now a law. Now doctors give many men and women an operation. This operation is called sterilization. The men and women can no longer have children after they have this operation. When the act comes in use the Alberta Eugenics Board is formed. On this Board are four people. The Board decides which men and women will be sterilized. In the next 43 years 2832 men and women with a disability have this operation. The Board has named 5000 of us who could have the operation.

1945 — Our parents are not happy. They begin to speak up. They want us to live at home. They want us to go to school close to home.

1953 — We have our first school in the community. It is in the home of Mrs. Christine Meikle.

1958 — The Christine Meikle School is built [in Bridgeland]. It is the first school building in the community for children with DD in Alberta.

1959 — People begin to use the word “normalization” for people with DD. It means that we have the right to live like all other people in Alberta. We can live where we want. We can work to make money. We can do things for fun like go to the movies or talk with friends.

1960 — Many of us work in sheltered workshops. A sheltered workshop is a place where only workers with DD work. We do tasks and there is staff that helps us. The pay is very low.

1972 — The government gets rid of the [Sexual Sterilization] Act. Now people know that the eugenics idea is wrong.

1973 to 1980 — Our parents want us to live in the community. Many of us move out of the institution. We move to the community. We now live in group homes or our own homes. The Provincial Training School gets a new name. It is now Michener Centre.

1980 — When we talk or write we use “people first language.” We used to say “developmentally disabled people.” Now we say “people with developmental disabilities.” We do this to show that the person is more important than the disability.

1995 — The court in Alberta found that the Alberta government was wrong about the sterilization operation. In Canada the law does not allow this operation to happen anymore. An operation like this is now a form of abuse. The Government of Alberta gives money to some of us to make up for this wrong. Ms. Leilani Muir got $230000. The government also paid Ms. Muir another $750000. In the institution people had said that she was a moron. Ms. Muir did prove that she is not a moron. She said that the name “moron” made it very hard to live a normal life. The word moron is a word that we do not use anymore. This name was used in the time of the institutions. You were called a moron when you had a hard time to read and write and learn things from a book. Now the name moron is used by some people when a person makes a bad choice.