Module Four: O Canada! When Will We Be Free?

“Histories are written and made in the struggle by real people, their social movements, and organizations to shape values, and in their struggles over what values will predominate in a society, and an economic, cultural, and political order at any time. The core of our history, at the core of who we are as an Association and as a movement, is precisely these struggles.”

— Michael Bach, Former CEO of Inclusion Canada

Fighting for a New Way

As perceptions of disability began to change, multiple social movements appeared in Canada. These movements have helped human rights to evolve and to improve the quality of life of Canadians. In Module three, you explored the ways that perceptions of disability changed because of these movements. You also looked at how that changed some people’s mindsets about disability. More people in Canada began to believe in a new vision for people who have an intellectual disability. They wanted people to live in the community and have the opportunity to go to school. Families and friends wanted the government to provide supports so their loved ones with disabilities could be part of their everyday lives instead of in an institution. In Module four, we will explore the process of how people have used social movements as a vehicle to create change. We will also look at intersectionality and how social movements that focus on human rights have impacted one another.

As change makers, it is important to understand that history is made up of many patterns. Looking back, there have been many changes in how people with disabilities are supported to live their lives in Canada. You looked at examples of the progress and decline of de-institutionalization in various provinces in Module three. Like waves of the ocean wash up on land, we can see waves of progress and decline in Canada’s history. At the same time, Canadians have experienced periods of time where they reconsidered their values, acknowledged mistakes and allowed these to inform a new direction and the path forward. Many ordinary Canadians showed extraordinary courage in helping to pave a new way forward for people with intellectual disabilities.

What is an advocate?

An advocate is someone who publicly supports and draws attention to a cause or an injustice. Advocates amplify people’s voices and spark conversations about injustice. They use their platforms and their own voices to speak up, or to defend the cause of another person. Advocates are allies to others and create spaces for others to be heard. In this way, you can be an advocate for people who have an intellectual disability by speaking up about what you have learned about institutionalization. You can also be an advocate of inclusion by looking for opportunities to include people with disabilities at school, at work and in your community.

You may be wondering, “What is the difference between an advocate and an activist?” For discussion instructions, please visit the teacher guidebook.

Social Movements Draw Attention to Disability Rights

Institutionalization had reached its peak during the 1970s in Canada. It was then that the largest number of people with an intellectual disability were locked away. Since the 1930s, parent groups had been creating networks of people who could help them advocate for change and draw the public’s attention to the injustice that was happening. By the 1960s attitudes began changing and even more parents were coming together to close institutions. These grassroots groups of families, originally from Montreal, Saskatchewan and Ontario, pushed for access to public education and community supports.

The civil rights movement in North America and the women’s movement are two movements you have probably learned a lot about. These two social movements helped create a dramatic shift in the way the de-institutionalization movement would move forward. Fewer people believed disability was a shameful secret, or a bad gene. At the same time, more people saw that a life sentence in an institution wasn’t the only life people with disabilities could have. This shift created space for people to be seen as human beings. The realization that disability was only one part of a person’s identity was an important milestone for the movement to reach. As a result, disability rights and the fight for social justice became more of a focus in Canada.

Three Accidental Advocates

Jo, Paulette and Audrey, in 2000, at the CACL Annual General Meeting held in Edmonton.

Parent networks grew between the 1930s and 1960s, and by the 1970s, these networks had become national organizations. Some examples of these include March of Dimes, Easter Seals and Associations for Community Living. These organizations still exist today, and were founded by families who wanted to improve the quality of life and the personal rights of people who have a disability and their families.1

There are many examples of the extraordinary ways that women ‘marched’ for equality. Women played a very important role within the community living movement. Women who had a child with a disability had organized themselves for decades. However, during the 1950s, their roles as advocates and their cause seemed to gain momentum. Their meetings would happen around kitchen tables, and they protested in their neighbourhoods and schools. They lobbied governments and went to court to defend their children’s rights.

Jo Dickey, Paulette Berthiaume and Audrey Cole are three Canadian mothers who played a major role in closing institutions and protecting the human rights of the disability community. These three women were not the only activists of their generation, but there are only a small number who have been at it as long as they have.2

These three women were brought together by their love for their children who have a disability. They worked with many people who, like them, felt a sense of urgency to change the systems that were limiting the lives of their children because they had a disability. They all came from different backgrounds, had different skills and knowledge, but they shared a common vision — as women, as mothers — and that connected them.

These women showed strong activism because they accepted the responsibility to ‘get active’ in creating change. They also refused to just accept the status quo. As women with children who had a disability, they experienced inequity too. Every day, mothers tirelessly advocate for their children. However, Jo, Paulette and Audrey became “accidental activists” when they saw beyond their own experiences and began to understand the injustice that was happening on a larger scale. They were just three of many mothers in Canada with children who had a disability. But, when these three ordinary women began advocating publicly for a new way forward, they made way for more mothers, children and families to join their cause. This enabled them to empower the voices of families across the country and mobilize a family-led movement for change in Canada.3

“It is almost impossible now, to imagine life in those days for people with an intellectual disability and their families. Society had little warmth or welcome for them. Support in the community was not on government agendas. If families had any choice, it was between no help at all or the institution, which, under health legislation, offered little beyond basic medical and custodial care. Often, families had to shop around even for a general practitioner who would accept our children as patients. Although some families began to reach out to each other, most remained isolated in uncaring communities facing, daily, the social stigma of intellectual disability.”

— Audrey Cole, Inclusion Canada Distinguished Associate

The Community Living and People First Movements

Grassroots groups of families pushed for access to public education and community support. The momentum they built eventually led to the creation of an official federation. A federation is an official advocacy organization that is made up of organizations at the federal, provincial and local levels. In 1958, the Canadian Association for Retarded Children (CARC) was founded. The organization has had different names since it was founded. In 1969, CARC changed its name to the Canadian Association for the Mentally Retarded (CAMR). Today, the organization is known as Inclusion Canada.

CAMR funded the Self Advocacy Development Project. This project grew into a movement, led by people who have an intellectual disability, and is now known as the People First Movement.

However, it began as an important project that gave survivors and people with intellectual disabilities a platform to advocate for the closure of institutions, and for the human rights of people living with a disability. By 1974, the first People First chapter was up and running in British Columbia. This first group was made up of men and women who lived in an institution and wanted to get out. They wanted to live in the community and to truly be given voice, choice, and rights. For the next several years, People First groups began to form in provinces, territories and communities across the country. By the mid 1980s, there was a national office and permanent, paid staff.

People First groups began to form in provinces, territories and communities across the country. These groups began to be recognized by government for their advocacy role.

During the 1980s, a motion was put forward to the Board of Directors of CAMR to change the name of the federation. The use of the word ‘retarded’ was no longer accepted by people who had an intellectual disability. The group demanded, “Label jars not people!” The motion asked the board to change the organization’s name. At this time, the board chose not to change the name. The group who put forward the motion walked out of the meeting in protest.

The founding members of the People First Movement fought to have an independent organization led by people who have an intellectual disability.

The People First rebellion had a very clear message. Its goal was to challenge the labels that people with disabilities were given. They also wanted people to be recognized as whole individuals who wanted access to life in the community, and the power to make decisions for themselves.

After the board’s decision not to change CAMR’s name, members petitioned the government to allow them to break away from the federation so that a movement of people with lived experience could be formed. Among those who advocated for this change were the founding members of the People First movement: Peter Park, Barb Goode, Paul Young and Pat Worth. By the late 1980s, the official People First of Canada organization was launched.

In 1985, CAMR realized that its work focused too much on disability, and not enough on the rights of the people whose freedom it was fighting for. In that same year, CAMR changed its name to the Canadian Association for Community Living (CACL).

Around the same time, People First of Canada was incorporated on April 6, 1991. Both People First and CACL signed a Memorandum of Understanding to respect the independence of the People First organization, and committed to working together.

Paul Young signs the Memorandum of Understanding on behalf of People First of Canada.

Over the last several decades, the Community Living movement and People First movements have often worked together to advocate for governments to hear from families and people who have an intellectual disability. Together, they helped close sheltered workshops and instead advocate for equal pay for equal work. They also advocate for inclusive education rather than segregation, and maintain their stance on the closure of institutions in Canada.

Initially, sheltered workshops provided people with disabilities with work to do during the day. These were organized programs specifically for people who had a disability, but often paid very little or no money at all for the work these people did.

Founding Members of the People First Movement

From 1982 to 2010

From 1982 to 2010, Canada reached many milestones on the road to evolving human rights for all. During these decades, the human rights of the LGBTQ2S+ community had become protected by our laws. Canadians began to acknowledge the cultural genocide of indigenous communities in residential schools. Canada also began to take its place on the world stage by joining the North American Free Trade Agreement (NAFTA), and hosting the winter Olympics. While all of this was going on, movements of survivors and families were also fighting for human rights in Canada and continued to advocate for the closure of institutions.

Another Point of View

So far in our study of institutionalization, we have seen how several social movements in Canada have influenced and, at times, worked together to better the lives of people who have an intellectual disability. We saw that the disability rights movement, civil rights movement, women’s movement, as well as family movements, have helped to pave the way for Canadians who have an intellectual disability to speak out about the discrimination they have experienced and continue to experience. Over time, Canada has seen members of many marginalized communities speak out and take action. The role of intersectionality in this discussion on social movements is also important to think about.

What is intersectionality?

Intersectionality is an important idea to understand when we have discussions about people’s lives. This is because, when we talk about people’s experiences, we want to understand what factors are influencing these experiences. Intersectionality looks at what makes a person who they are and how they connect to their community.

There are many things that make up a person’s identity. In the image below, you can see what some of those things might be. Every person will have a different mix of these identities.

There are many things that make up a person’s identity. What are some things that make up your identity? How do they impact the way you connect with other people?

The labels that make up a person’s identity sometimes create barriers for people. For example, a person who identifies as female, indigenous and has a disability will have to overcome several barriers. This is because certain groups of people in our society continue to have negative experiences because of the stigma, stereotypes and mindsets that exist.

If you have studied intersectionality before, you will also know that certain labels or identities also come with privileges. When a person has privilege, they experience fewer barriers in their life. Having privilege is not right or wrong. It just is. But, understanding what privileges you have and using that privilege to empower others is the responsibility of every Canadian.

When it comes to supporting people with disabilities, we must look at the whole person. When we focus just on their disability, then we will miss out on important things that make up who they really are, as well as the things that influence peoples’ experiences.

What have we learned?

In the following two videos, you will hear from allies and a survivor about how identity has played a role in the lives of people living in institutions. In the first video, Nicole introduces you to Victoria and Joe. They discuss the experience of indigenous children who were forced to live in institutions called residential schools. Together, they talk about the similarities and differences between these institutional models and the impact they have had.

In the second video, Nicole and Marcel discuss the experience of French Canadians who have an intellectual disability. French Canadians were robbed of their culture, language and way of life while living in institutions run by English-speaking staff.

For further discussion instructions, please see the teacher guidebook.

A Parallel Experience M4.V1

This video explores the similarities and differences between residential schools and institutions for people who have an intellectual disability.

Regaining Our Identity M4.V2

This video explores how institutionalization impacted the lives of French Canadians.

Exhibits at the Canadian Human Rights Museum in Winnipeg draw attention to the experiences of Canada’s First Peoples. In Picking up the Pieces: The Making of the Witness Blanket, Elaine Ting shares her journey of reconciliation. She talks about how her family bears witness to what Canada has wrongfully done to indigenous children and families.

Canada must continue to acknowledge the horrific abuse experienced by indigenous people and take steps to be a part of the process of reconciliation. Canadians with and without a disability must stand in solidarity together. By bearing witness to people’s truths and by taking action against discrimination of any kind we can build a better place for all. It is not enough to simply know about institutionalization. It is important that we continue to empower all people to speak up and work hard to breakdown barriers that limit people’s lives. We must do this for the sake of young people, to build a better future for them. We must do it for survivors, and we must do it for those who never left and who now lay in unmarked graves. How will you bear witness to the institutionalization of people who have an intellectual disability?

The cemetery at Huronia Regional Centre has very few gravestones. Many markers have been moved and those that remain only have resident numbers on them. What does this say about the way people’s lives were valued?

Human Rights in Canada

Everyone in the world is allowed basic human rights. There are international laws and laws within Canada that protect these rights. First, Canada follows an international agreement called the ‘Universal Declaration of Human Rights.’ Canada also follows the United Nations Convention on the Rights of Persons with Disabilities. This means that the Canadian government must follow international guidelines that protect the rights of all people with and without a disability.

Canada also protects the human rights of Canadians through its own laws and guiding documents, including federal, provincial, and territorial laws. These laws and guiding documents promise that all Canadians, with or without a disability, can enjoy and access basic human rights. One of these guiding documents is called the Canadian Charter of Rights and Freedoms.

Both international and domestic laws help the government to guarantee economic, social, and cultural rights for all people. Different government programs and plans have also been designed to protect human rights in Canada. Learn more about the Charter and the Convention below!

The Canadian Charter of Rights and Freedoms

The Canadian Charter of Rights and Freedoms is a legal document that sets out the rights and freedoms necessary for all Canadians. The Charter is one part of the Canadian Constitution. The Constitution is the ultimate law that sets the basic rules about how Canada operates.

The Charter protects every Canadian’s right to be treated equally. It also includes other important rights, such as the right to live and seek employment anywhere in Canada. It contains legal rights, mobility rights, democratic rights, freedom rights, official language rights, minority language education rights, rights to multicultural heritage and indigenous people’s rights.

The Charter promises rights of freedom to all Canadians. Canadians are free to choose their own religion. They can freely express their thoughts and beliefs. Canadians are free to gather as peaceful groups. All Canadians also have the right to belong to any groups or unions that would be protected under the law.

Learn more about the Canadian Charter of Rights and Freedoms and the Canadian Constitution.

The Canadian Charter of Rights and Freedoms is a legal document that sets out the rights and freedoms necessary for all Canadians.

United Nations Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD is the first human rights agreement of the 21st century. This convention is a guiding document that helps countries to understand what they have to do to make sure that people with disabilities have the same rights as everyone else.

Once a country ratifies a convention, it becomes a legal agreement. It also is a promise to set goals and actions to be more inclusive. Canada ratified the CRPD on March 11, 2010. Ratifying means that Canada agrees to follow the rules of the convention to protect the human rights of people with disabilities. Agreeing to these rules, Canada leads and supports activities that will make sure that people with disabilities are treated equally, have accessibility to all opportunities and are respected in terms of all basic human rights. It also means that the government of Canada can be held accountable in international court for not following the rules outlined in the convention.

Learn more about the CRPD.

Human Rights Issues in Canada

To be an ally to people who have an intellectual disability, we need to truly get to know people. That means we have to spend time with people at school, at work and in our community. We can also identify the gaps in the experiences of people who have an intellectual disability when we talk to them about their experiences. When we are aware of other people’s realities, we are able to defend their rights and help amplify their voices when they need our support.

The Joint De-institutionalization Taskforce in Canada is committed to drawing attention to institutionalization. The Task Force is a partnership between People First of Canada and Inclusion Canada. These groups believe that institutionalization is a denial of a person’s basic right to citizenship and participation in community. They also believe institutionalization is against the rights protected by the Canadian Charter of Rights and Freedoms and the CRPD. Even when facilities close, people with an intellectual disability continue to be segregated, congregated and isolated. Even in the community and at school, institutional mindsets are limiting people’s lives. The Task Force is committed to highlighting when this happens. It is also committed to drawing attention to the ways people are unacceptably confined in institutions across Canada.

Disability Rights In Canada Versus Around the World

Canada is one of many countries around the globe who has committed to ensuring the full inclusion of people who have a disability. To do this, the United Nations created the 2030 Sustainable Development Agenda. This agenda has a list of 17 goals. These goals are inclusive of people who have a disability. Countries who commit to these goals must report on the things they are doing to reach these goals. Living in the community, having a quality education and exercising decision-making power are all included as goals in the 2030 Agenda. In the following videos, Nicole sits down with three Canadian experts to ask them about what Canada is doing to reach these goals, what have we already accomplished and what work still needs to be done.

For further discussion, please see the teacher guidebook.

Resilient Families Are Keeping The Movement Alive M4.V3

In this video, you will hear from Ms. Audrey Cole, a pioneer of the family movement in Canada. Ms. Cole is a mother and fierce advocate who has made strides to protect the legal rights of people who have a disability in Canada.

Questions to think about:

  1. Why is living in the community so important?
  2. What do parents today need to know as they plan for the future?

Inclusion In Canadian Schools M4.V4

In this video, you will hear from inclusive education specialist Gordon Porter. In Canada, a quality education is a human right. What does inclusion look like in schools across Canada?

Questions to think about:

  1. Why is it important for students who have a disability to be included in regular classrooms?
  2. What work still has to be done to ensure that children in Canada have equal access to a quality education?

Choice is Fundamental to Freedom M4.V5

In this video, you will hear from Dr. Catherine Frazee, a pioneer in the disability rights movement in Canada. How can we play a role in supporting people who have a disability to feel a sense of agency in their life?

Questions to think about:

  1. What is agency?
  2. What is one thing that you learned that you will think about next time you meet someone who has a disability?

Module Four Reflections M4.V6

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


M. Panitch, Disability, Mothers and Organizations, p. 2


M. Panitch, Disability, Mothers and Organizations, p. 5


M. Panitch, Disability, Mothers and Organizations, p. 6