Module Two: The Power of Perceptions

“Hell. That is how I would describe it. It was hell on earth. At night, they would scream for their mothers.”

— Simon Snyder, Nova Scotia Survivor

How Could This Happen?

In Module one, survivors and their families shared their experiences about what life is like in an institution. They also shared some of the very personal ways their memories impact their daily life. We heard that families felt overwhelmed and powerless when it came to caring for their children. They felt this way because communities and governments did not provide services like the ones we have today. We also learned how hundreds of families were separated from their children who were sent to live far away.  The systems and governments that had the responsibility to care for people caused undeniable suffering.   

In Module two, we will look at several social and political factors that allowed the systematic segregation of people who have an intellectual disability in Canada. The goal of this module is to explore the pieces of history that influenced governments, organizations and families to accept the idea that institutionalization was the best way to care for people. By looking closely at how perceptions of people with a disability led to institutionalization, we can uncover where things went wrong. To do this, we will look at historical evidence of these perceptions and world events between 1800 to 1945. Survivors have made it clear that whether it was intended or not, institutions did not provide good lives for people. Module two will begin to uncover the ways institutionalization continues to exist in Canada and the impact this has on people. The emotional and physical impacts of segregation do not disappear simply when the doors of institutions close.

How did the idea of institutionalization emerge?

It is important to know that institutions did not appear out of thin air. In fact, institutions are a very complex thing to understand. In late 19th century, people who were labeled as “feebleminded” were wrongfully seen as a major social problem in Canada. People were also unjustly blamed for things like poverty, homelessness and were said to have low morals. The “feebleminded” were talked about like they were a burden on society and must be eliminated. Institutions were seen as the way to do that. 

We will not end institutionalization in Canada until we change our attitudes towards disability and better understand people for who they really are. This transformation needs to happen on a societal, community and individual level. In this Module, you will explore several factors that have contributed to negative perceptions of disability. It is because of these perceptions that institutions were built and continue to exist today.

The Influence Of Science

Science is just one of the major things that has influenced the way we think about disability in our society.  As our understanding of science grew, so did the medical language we used. Scientists and doctors now had the language to label and diagnose people for the first time in history. Although on the surface this is a good thing, with the arrival of labels came the emergence of what was considered “normal”. Soon after, our society found words to describe what was “abnormal” or “deviant.” These definitions of “normal” and “abnormal” were powerful and influential in how people were perceived. 1

Society now had a formal way to categorize people. As a result, governments designed systems in education and health care that were used to control and keep track of “abnormal” people. They were also use used to measure how different people were. For example, in the late 1800s to the early 1900s, governments and scientists wanted to measure how intelligent people were. The school system was used to test children and group them into categories that were based on levels of intelligence. This information was used to identify which children were normal and which ones were “abnormal”.2

We still see the impact of this in schools today. High school students in mainstream classes are grouped into grade streams based on academic ability. Even more disturbing is that we continue to group students with different learning needs into separate or “special” classes. This language suggests that this category of learners is outside the “norm”. This kind of thinking makes it seem like it is acceptable to continue to segregate people in our schools. Students in special education often have separate classrooms, occupy different sections of the school and have separate entrances. They often have their own timetables and even take separate buses to get to school. Being categorized this way limits people’s social circles and the opportunities students with disabilities have to learn and take part in their school community. Research shows that students who do not learn alongside their peers will be seen by other students as “being not part of the group” or “different”. The truth is institutionalization is alive and well in Canadian schools.3

The Influence Of Capitalism

At the same time that Canada’s number of institutions were growing in large numbers, Canada was beginning to modernize. Governments, industries and society as a whole was changing. Canada was becoming a capitalist society, putting value on productivity and economic growth. At the start of the 20thcentury, intelligence, order and efficiency were valued by society. In fact, during this time people with disabilities became the subjects of experiments in Canada and abroad. This fuelled perceptions that people who had a disability were less than human. 

Additionally, the industrial revolution encouraged capitalist society to see itself as one large working machine. Communities, schools, industries and governments were the moving parts. To achieve productivity, each part had a role. Everyone needed to work in a coordinated way. People who were seen as less productive or not contributing members of society began to be “othered.” 

The industrial era did not accommodate people who had an intellectual disability. Many well-meaning people felt that those who had a disability would be better off in a place that kept them away from the high expectations of the world. Institutions were seen as the solution to that.4 Having low expectations of people with disabilities limited society’s view of what people were truly capable of. In fact, survivor stories show us that there are many possibilities for what people can achieve when we recognize their strengths and value authentic inclusion.5

The Influence Of Charitable Values

Members of the middle-upper class saw poverty, crime, mental illness and disability as major social problems that needed attention. They did not like that asylums, prisons and hospitals were overcrowded. They saw the unhealthy conditions in those places and wanted to make changes. They advocated for the government to provide better care for people living on the margins of society. Building new facilities or institutions were believed to be a modern and more humane solution. Social reform groups, like women’s movements, wanted to move away from asylums and bring order and respectability to the way people were cared for. They also wanted to create safe places where people could be sent to be cured or rehabilitated. There was a deep respect for the power of education during this time. Society believed that people could be transformed into productive members of society through education and training.6

Institutions were seen as places where Canadians could receive specialized care and rehabilitation. Health pioneers saw these specialized facilities as a modern way forward. One On Every Street is an example of propaganda that was used by the Ontario government to give the public the impression that institutions were a place where people who had an intellectual disability could receive advanced care.  

Despite good intentions, charity groups and religious beliefs of the era reinforced the misconception that people who have disabilities are dependent on other people. Their desire to create something separate pushed people out of “normal” society. It wrongfully confirmed the idea that people who have disabilities were “better off” in segregated settings outside the community. Today, it is easy to see how charity continues to play a role in the way people who have a disability continue to be segregated. People who have a charity lens, see people who have a disability as victims. They tend to focus on what a person cannot do and believe that people with disabilities cannot help themselves or lead an independent life. This type of thinking is harmful because it robs people of their freedom and autonomy.7

Take a minute to think. When you see someone with a disability, have you ever thought about what their friendship could offer you? Or do you only see someone who needs something from you? Depending on how you answer, the narrative you have learned may or may not be the result of institutionalized thinking.

The Influence Of Colonization and Eugenics

Colonization has also shaped Canadian society and perceptions of disability. We know from learning about Canada’s history that colonization created systems that gave some people power and control over others. There are many links between the way that Indigenous nations and people with disabilities have been treated throughout Canada’s history. We will talk more about that in Module Four. However, what is important to know is that the power that colonists gained enabled governments to make decisions about how to control “problematic” groups of people. Black slaves, Indigenous Peoples, Jews, non-European immigrants and people with disabilities have suffered barbaric treatments because they were seen as “problematic” or “unwanted.”

Institutions were a way to control and separate unwanted people from the rest of society. Another way that governments in Canada controlled the disabled population was by robbing women who had a disability of their right to have children. The Eugenics movement was thriving in Europe and in Canada during the mid-20th century. The Eugenics movement believed in Darwin’s “survival of the fittest” and wanted to build what was thought to be a productive human race. Eugenicists did not want the “unfit” to have children.

Around the same time Eugenics was popular in Canada, groups like the Nazi party did medical trials on how to eliminate people with disabilities from society. For example, the Nazi euthanasia program (code name Aktion T-4) was set up to eliminate “life unworthy of life” for those that were “sick and disabled”. However, eugenics was not just a Nazi practice. In fact, it was seen as a valued and acceptable way to manage the disability problem in Canada. Tommy Douglas, Alexander Graham Bell and Emily Murphy (a member of the Famous Five) were strong supporters of eugenics. Laws in British Columbia and Alberta enabled governments to sterilize women who had a disability. Many supporters of eugenics lobbied to have institutions for “mental defectives” built and this enabled them to begin sterilizing residents. For over 45 years, before laws in Canada were changed, over 3,200 women from Alberta and British Columbia were sterilized against their will.8

It’s difficult to imagine how human rights movements, like women’s rights movements, could lobby and support the creation of laws and institutions that made women with a disability powerless. However, this horrific truth illustrates the power of perceptions and the imbalance of power that exists between people who have a disability and people who do not.9

The legacy of colonization and the eugenics movement continues to influence the way disability is seen today. “Newgenics” is a word used to describe a modern form of eugenics. Newgenics includes a variety of medical, political and social ideas. The overall idea is to improve humankind on one hand and erase disability and differences on the other. The repeal of the Sexual Sterilization Act in 1972 was the official end of eugenics in Alberta. In 1986, the Supreme Court of Canada ruled on Eve’s case which made it illegal to sterilize people anywhere in Canada without their consent. However, efforts to control the sexuality and reproduction of people who have a disability are still very popular today. Some examples of these include prenatal testing and selective abortion. The lack of education and awareness about sexuality for people who have an intellectual disability also controls their sexuality and reproduction.10 All of these examples could make a person feel that people who have a disability are not wanted or valued in Canadian society.

Why do Canadians still see disability as a “problem”?
More importantly, why do Canadians think that disability defines what a person is capable of?

 

Looking at Cause and Consequence M2.V1

In this video, Nicole dives deeper into understanding the concepts of cause and consequence. How are all these ideas interconnected?

What Influences Our Perceptions of People?

Science Capitalism Colonization Charity
Created the perception that people who have a disability were less than human. Created the perception that people who have disabilities were not productive. Created the perception that people who have a disability were a problem that needed to be managed. Created the perception that people who have a disability were not normal and were dependant on others.
Truths to Think About

The language we use to label or categorize people has a major impact on how people are seen.

Truths to Think About

Identifying peoples’ strengths can allow us to find opportunities for people that are the right fit.

Truths to Think About

People don’t need to be managed. They need to be supported individually and recognized for the person they are. Disability does not define what a person is capable of.

Truths to Think About

Referring to a person’s “mental age” dismisses their lived experiences. Doing things FOR people limits people’s independence and choice.

 

So far, you have learned how science, capitalism, charity and colonization created negative perceptions of disability in our society. These perceptions encouraged society at that time to build institutions for people with intellectual disabilities. This led Canadians with disabilities to be legally segregated and isolated. Pat Worth is a survivor of the Huronia Regional Center. He said, “An institution is not just a place, it is the way people think.”11 This means that institutions are not limited to a building. It impacts the way people think and make decisions. People will continue to be institutionalized as long as others hold negative perceptions of disability and do not see the value of all human life.  

Many ideas and beliefs about people came together all at the same time. These ideas and beliefs influenced perceptions of disability. In the next activity, we will explore how negative perceptions of disability continue to impact peoples’ lives.  If we want to fix the mistakes of the past, we must understand the way our society thinks about disability and question the way governments choose to support people and families. Once we understand that, we will see how people continue to be institutionalized today. Until our society learns to see people as more than just a person with a disability, institutionalization will continue to exist in our communities. The truth is, we are more alike than we are different.

The Impact of Our Wounds

For a moment, let’s think about the way the human brain works. It is human nature to make judgements about people all the time and especially in certain situations. For example, when you are meeting a person for the first time. Most times, you don’t even realize that you are making judgements. Our society teaches us narratives about people that influence our judgements about them. Our cultures, belief systems, our past experiences, and the people in our lives influence the narratives we learn. Narratives can be negative or positive, true or untrue and they are very hard to change. Our judgements of people are influenced by our experience with them but even more so by the narratives we learned about them. We use this information to form stereotypes. Stereotypes are the images we see in our mind or the ideas we have that are often oversimplified but widely recognized.12

Try it. Describe the image that comes to mind when you hear the following words:
Teenager. Homelessness. Immigrant. Disability.

Most people will describe a similar stereotype for each word when they do this activity.

In both Modules one and two, we have explored the ways in which people who have a disability have been viewed, treated and abused. These truths did not just exist in the past. Every day, people with disabilities must overcome challenges in order to be acknowledged for who they really are as a person.

In the chart below, we have listed some very common assumptions and stereotypes of people who have a disability. We have listed what you might hear from people who hold these assumptions. We also list the impact of these mindsets and the type of thinking that is required to change those negative perceptions of people. See the student workbook (M2.3) for discussion questions. 

 

The assumption: What it often sounds like: The impact on people’s lives: Approaches that can change others’ mindsets and lead to positive experiences:
A person labeled with a disability is different than me. “Oh the ‘Spec ED kids’ don’t eat lunch in the cafeteria.” A person’s identity becomes defined by their disability. People become part of a group and are othered. People become known for their disability instead of who they are as a person. “Let’s invite Thivjan and Rhianna to eat in the caf with us. I noticed they don’t often go down there. Maybe they just need someone to invite them.”
A person with a disability is not able OR is limited in what they can do. “My student, Ahmad, is ‘low-functioning’ and has many challenges.” People are robbed of their childhood or life experiences that lead to the good things in life. “Ahmad really enjoys meeting new people. He can talk to anyone! I wonder if he would be interested in helping sell ticket to this year’s prom as a member of student council?”
A person with a disability is seen as a difficult person or a problem. “We don’t feel comfortable taking Bianca on this field trip to a movie without extra staff to provide supervision in case she acts out. Sadly, there just aren’t enough staff for this, so Bianca won’t be able to come.” It is very likely that they will be denied all sorts of opportunities, that others will try to stay away from them, and that they will be congregated with others like them so that they can be managed. Bianca loves the movies, and there is a class field trip to the theatre. Let’s prepare Bianca and her classmates for what will happen on this trip. Let’s think about what Bianca will need and let’s ask her how we can support her to attend. Let’s arrange for a few of her friends, and perhaps the teacher, EA and/or parent volunteers to take turns helping when needed. Perhaps the Principal will join us and offer support if needed too.
An adult with a disability is seen as a child. “Dustin is 18, but he has the mind of a five year old.” When a person is considered an eternal child, they are often not taken seriously. People aren’t treated with dignity and respect. They are offered childish things to do all of their lives. They are denied adult experiences and responsibilities, frequently because others want to protect them. Dustin is 18 and therefore has had 18 years of experience. That counts. He may learn a little slower than me, but he still has life experience and that is valuable.
People with disabilities are seen as people to be pitied. “Those poor people, what kind of life can they really have?”

“It takes a special person to work with people like them.”

When a person with a disability is seen as someone in need, they are often pitied by others. This restricts people from recognizing what people are capable of. It also gets in the way for others to recognize a person’s gifts and talents. People who are pitied are often overprotected by well-intentioned people. Supporting people in a dignified way is a duty and privilege. What is incredible, is watching people be seen for their valuable contributions and gifts.

“You are a model of inclusion. You must overcome challenges every day, but you find a way to be patient and see the best in others. What can I do to help break down barriers for you? I want to see you succeed.”

 

Traumatic experiences lead to wounds and scars. These scars can be physical or emotional. Often they make a person feel of low self-worth and can haunt them for the rest of their lives. For example, there is evidence that teeth of residents were pulled so that they couldn’t bite staff when they were trying to defend themselves. Others were forced to have electric shock therapy. These barbaric treatments were used to control people’s behaviour. It is important to recognize the traumatic experiences are not just a thing of the past. They are happening right now in many different forms. Canada’s long, dark and backdoor history has left people to suffer, while they are locked away and silenced. To understand the extent of these wounds, several survivors have come together to share their truths. Both past and present, these truths are proof of this suffering.

In the following section, you will bear witness to the stories of nine survivors of institutions in Canada. Their stories show incredible strength and determination. Each survivor has experienced wounding. Being institutionalized has impacted their everyday lives in many ways. In the following videos, we will focus on:

  1.  The impact of institutionalization on a person’s identity
  2.  The way people lose power and control in their lives
  3.  What people have had to do to survive

Their stories may be hard to hear but each survivor has chosen to share their truth to educate others. Some survivors will also share what they have done to take back their power back, find their identity and enjoy a good life in the community.

We Were Just a Number

Survivors often speak about the intense boredom and loneliness they felt while living at the institution.

“I didn’t feel beautiful at the institution. I didn’t feel anything.”

— Liz, Manitoba Survivor

Your identity is unique to you. Your identity is made up of two parts. The first part is the way you think about yourself. The second part is shaped by how others view you. The way you look, your beliefs, cultural heritage, strengths and weakness, and the groups you hang out with are just examples of the kinds of things that make up your identity.  

Living in an institution or an institution-like place impacts the way people are viewed by the community and the way people view themselves. When people with disabilities are congregated in large numbers and in segregated settings, people in the community make judgements about people and why they are kept away from the rest of the community. 

Institutionalization also impacts the way employees see residents of the institution. In turn, this impacts the way residents see themselves. In large, congregated settings, people are stripped of their identity and this can change the way people are treated. This principle is true in our communities too.

For example, it is more likely that you will have better relationships with your classmates and your professor in a smaller university class than a larger one. In a small class, the professor can see if the students do not understand the material and can make adjustments.  This isn’t possible in a class of hundreds of people unless the professor has direct contact with each student. 

The same principle is true in settings like institutions but the potential to be harmed is much higher. Problems that arise in institutional settings are less likely to become noticed when residents are congregated in large numbers. This is very dangerous. Survivor testimonies demonstrate that this has led to violence, sexual abuse and assault between residents, and between residents and staff. In many cases, survivors also did not see their families. Especially when they were sent to live in another province or city. When this happened, people had no direct contact with anyone outside the institution who could advocate for them or report when bad things happened. Segregating and isolating people makes people very vulnerable. 

Having a strong sense of who you are gives you confidence, which makes it easier for you to stand up for yourself. Having opportunities to express yourself is also very important. In the next video, you will hear from survivors to better understand the ways that institutions rob people of their identity. You will also find out how living in the community has changed people’s lives.

Survivor Insights On Identity M2.V2

In this video, survivors from Manitoba, Ontario and Nova Scotia explore the ways that institutionalization robbed people of their identity.

They Wanted To Control Us

Thousands of Canadians continue to fight for the right for people who have an intellectual disability to experience freedom, dignity and choice in their life.

“We weren’t allowed to think. We had to do as we were told. We were like robots.”

— Marie Slark, Ontario Survivor

Being a teenager is an exciting time in life because you are beginning to make choices about your future. You’re exploring career ideas, where you want to live and what goals you want to achieve.  In many ways, you may have considerable freedom to make choices about the style of your clothes, who you hang out with or date, what foods you eat, what courses you take and how you spend any money that you may earn. That said, it might be frustrating at times but the adults in your life still have the power to influence or make some decisions for you. As you get older, society expects that you will continue to gain more control over the decisions you make until you reach adulthood.

However, our society has different expectations of people who have an intellectual disability. The history of institutionalization has taught us a narrative that people with disabilities need to be cared for and kept safe. This means that people are often seen as an “eternal child” and that the people who are in their lives need to act like parents. Even in adulthood, people tell us they are not allowed to decide what clothes they wear or what they will eat. Often, activities are planned by staff, not the person themselves, and are not age appropriate. This can make it hard to make connections with people who are the same age. Often, people are living pre-determined lives that revolve around the schedules and capacities of the employees who work in their home.

In larger institutional settings, often, the number of choices given to a person are much less than in homes where numbers are smaller or when a person is supported to live independently. This was demonstrated during the Covid-19 pandemic. There were large numbers of people in long-term care homes who were not being provided with basic necessities. It is important that we recognize the principle that institutional-like settings do not empower people to live their life on their own terms.

In the next video, survivors discuss the ways that they were stripped of their power and control while they lived in an institution.

Survivor Insights On Power and Control M2.V3

In this video, survivors from Manitoba, Ontario and Nova Scotia explore the ways that they lost power and control in their life while living at an institution.

Survivor Insights On Living In Fear M2.V4

In this video, survivors from Manitoba, Ontario and Nova Scotia speak their truths about how they survived life in an institution.

Survivors’ insights have helped us understand how institutions strip people of their identity. This leaves people without any power to protect themselves. We’ve also begun to understand how having large numbers of people living together can lead to dehumanizing conditions. This brings us to the third way that survivors have been impacted by institutionalization. 

Survivor testimonies tell us that living under constant surveillance and the fear of being punished has left deep wounds on people. In an environment designed to “manage problematic people,” people “come to learn that they must act as if they are being watched or could be caught at any moment.”13 A member of staff might not always be watching but living in fear forces people to behave as if someone was always watching. This is traumatizing and many survivors now live with post-traumatic stress disorder. 

Some survivors, like Henry, tried to protect other residents from being punished or abused. In some cases, residents who tried to defend themselves or others were reported as being troublemakers, defiant or violent. These kinds of environments put people in harmful situations. They lack the power to speak up or defend themselves or even have the right to say “no.”

Questions to Ponder

  1. What can we do to make sure people are treated with dignity and respect?
  2. What kind of life experiences have people been robbed of?
  3. What impact have these stories had on you?

Module Two Reflections M2.V5

In this video, Nicole reflects on what has been learned in Module two.

Independent Study

Hearing survivor testimonials is very hard. It is important that we bear witness to the suffering that people have endured and learn from the mistakes that Canada has made. Take some time to reflect on what you have heard and read in Module two. See student workbook (M2.12) for reflection questions and activities.

1.

M. Burghardt, Broken, p. 27-29

5.

M. Burghardt, Broken, p. 20-21

6.

Canadian Encyclopedia, Women’s Organizations, 2021. & Canadian Encyclopedia, Disability Rights, 2021.

7.

M. Burghardt, Broken, p. 14-17

8.

Eugenics Newgenics, University of Lethbridge, 2020. & M. Burghardt, Broken, p. 31-33

11.

People First of Canada, 2021.

12.

E. Baker-Tinsley, Consequences of Being Devalued, 2020 & W. Dr. Wolfensberger, 2011.

13.

M. Burghardt, Broken, p. 89