Module Five: Understanding Patterns of Segregation

Enough is Enough

Things that happened in the past are often hard to understand because we may not have been alive when they were happening. That is why we listen to a variety of historical perspectives and look at evidence of what really happened. By doing this, we can begin to piece together a narrative of the past. We commonly refer to that narrative as ‘history.’

As time passes and more perspectives are acknowledged, what we consider to be true about the past can change. In Modules one through four, we analyzed the themes of cause and consequence. We also looked at how change has evolved over time. In Module five, we will explore the theme of continuity.

Continuity is a way of understanding how events, people and perspectives all work together over time. The themes of continuity and change are used to compare periods of time and the process or way change occurred. For example, social movements created change in the evolution of human rights for people with disabilities.

To study continuity, you also must consider the concepts of progress and decline. This means we can make judgements about the ways things get better or worse as time goes on. People who want change must look at the past in order to understand what needs to happen now to create a better future. Sometimes, the things that need to change are the things that have stayed the same. This is true of institutionalization in Canada. Segregation continues to limit people’s lives, and that needs to change.

Generations of survivors, families and their allies have worked for decades to free their loved ones and build inclusive communities. However, even now, institutions, institutional models and institutional ways of thinking continue to impact the experiences of people who have an intellectual disability.

In this module, we are going to look closely at the ways that institutionalization and segregation continue to impact the lives of people in Canada who have an intellectual disability. We will also look at the ways that we can begin to make a difference using the information we learn. But first, let’s recap what you learned in Modules one through four and look at what you already know.

Testing Your Knowledge of Modules One to Four

Institutionalization from 1839 to Present Day

As change-makers, we need to look for patterns in the way people have been treated. We also need to look at the similarities and differences in people’s experiences over time. This will help inform us of what we need to do as advocates and allies. Listening to people’s stories and learning from people’s experiences is one way to do this.

Another way we can stay informed is by researching statistics and following trends. A trend is when we see numbers grow in a particular direction. Sometimes statistics can be useful in helping us understand where the gaps in people’s experiences exist. They also give us a clear understanding of the degree of segregation that is being experienced by people. Here, the term degree means we want to understand how many people are affected. It also means we want to understand the ways people are experiencing segregation so we can measure the impact this has on a person’s life.

The Federal Disability Report

In 2010, the Government of Canada published The Federal Disability Report. This report was written when Canada ratified the UNCRPD and acts like a report card. However, it is important to note that this report is an evaluation of the government by the government.

The report has several chapters that explore key priorities related to people’s experiences. These include:

• standard of living
• health
• learning
• employment
• community participation

We encourage you to look at the report yourself with a critical eye and consider any bias that may exist. We have included some information below for you to think about. The information is organized into three themes. These themes have been selected because they are very important to youth who have an intellectual disability in Canada. You can learn more about these topics by going to the student workbook (handout M5.1) on this website.

Advocates Speak Out

Real Work for Real Pay

• People with intellectual disabilities should have choice and opportunity to earn a living through paid employment.
• Employment and careers are a central part of life and people with intellectual disabilities are not unemployable and are an untapped labour market.
• Historically, people with intellectual disabilities have been placed in sheltered workshops and long-term make-work projects. In these workshops, the work is often meaningless and the pay is very limited. These ‘work’ placements congregated and segregated people. People with intellectual disabilities have many talents and gifts that can be used within their communities, and are part of an untapped labour market.
• Support to make informed choices about work and careers needs to be provided. Job accommodations and supports need to be provided. Wages and benefits should be equal to those of persons without disabilities.

Everyone has the Right to a Quality Education

• Article 24 of the CRPD prohibits discrimination against children with disabilities and protects the right to inclusive education. The Parliament of Canada, and each Canadian province, has ratified the Convention. This means that Canada is required to follow these rules.
• The Canadian Government is responsible for guaranteeing all children have access an to inclusive general education with non-disabled peers. This means that barriers must be removed so all children and youth can attend typical classrooms in public schools.
• Students with intellectual disabilities need the equal opportunity to engage in post-secondary education or other opportunities for skills development.
• Inclusive education benefits all students, whether or not they have a disability.

Institutions are NOT Homes

• Every Canadian has the right to live in their community. This right is protected by Article 19 of the CRPD and Sections 7 and 15 of the Canadian Charter of Rights and Freedoms.
• Governments must close institutions and educate Canadian society about the better options that are available.
• Public policy in Canada must facilitate, accommodate and enable the free and full exercise of this right.

Handout M5.1 in the student workbook has more information about these themes.

Questions to Think About

1. What patterns do you see in the experiences of Canadians who have a disability?
2. What institutional mindsets create barriers for people at work, school and in the community?
3. What things have you learned that you don’t want to see continue in the future for Canadians who have a disability?

Emerald Hall: Nova Scotia Human Rights Commission Board of Inquiry Case

People with intellectual disabilities are often left behind in our society. They are often left out of conversations that impact their lives. We have seen how the history of institutionalization has shielded communities from really knowing the experiences of people living in institutions. We now rely on testimony from survivors, employees who speak out and family members share the truth of institutionalization. Though our communities are still not perfect, living in the community is where people belong. If we know this is true, why are people who have an intellectual disability still segregated in large facilities funded by the government? Canada has laws that says every Canadian has the right to live in the community. How can citizens hold our governments accountable for funding systems that institutionalize people?

In the next section, you will explore a human rights case that took place in Nova Scotia. The case shows how people can hold the government accountable.

An Introduction to the Case

In August 2014, a human rights inquiry was filed against the Department of Community Services (DCS) in Nova Scotia. Three residents of Emerald Hall said they wanted to live in the community in a house of two or three people. However, they were not granted this opportunity and were forced to live at The Nova Scotia Hospital. Emerald Hall is a locked psychiatric ward at The Nova Scotia Hospital. There was no medical or legal reasons for these people to be at Emerald Hall. Good and faithful staff requested that one resident, named Beth Maclean, be moved out and into a home at her request. They found no reason to think that she could not live in the community with some support.²

This case was filed as four separate cases.

Case Numbers One to Three

First, the three residents, Ms. Beth Maclean, Mr. Joseph Delaney and Ms. Sheila Livingstone, filed complaints against the provincial government separately. They argued they were being discriminated against because of their disabilities. They acknowledged that other groups of people who were under the care of the DCS (and were able bodied) receive support to live in the community.³ They argued that the province of Nova Scotia is required under the Human Rights Act to provide basic support that allows for people with disabilities to live in the community.⁴

“I don’t want to live at Emerald Hall. I want to live in a home, on a street in a neighbourhood and to live a normal life. I have been unable to properly develop or to receive an education. I have been deprived of the chance to work and do other things in the community.”

— Beth Maclean

Case Number Four

Second, the Disability Rights Coalition (DRC) filed a case against the province of Nova Scotia. Its case wasn’t about a specific person. It was about getting justice for all people in Nova Scotia who have a disability and are institutionalized. They argued that the province of Nova Scotia, through the DCS, systematically discriminates against people with disabilities by denying them access to community and residential supports and services. This includes people who live in institutions and those who are on a waist list for community supports and services. In 2017, waitlists for services in Nova Scotia rose to 1,341 people.⁶

Many times throughout the case, the DCS was accused of stalling the case. During four long years the case dragged on (2014 to 2018). During that time, the DCS did not move any of the residents out of the institution.⁷

“The Department of Community Services appears to practice systemic discrimination against people with mental and developmental disabilities by considering community options a privilege and not a RIGHT.”

— The Disability Rights Coalition⁸

Defence Made by The Department of Community Services

The Department of Community Services acknowledged that the province had arranged for inappropriate placements for each of the complainants.⁹ It also argued that, while they were not meeting the timeline they said they would, the province was moving forward with plans to close institutions and move to a more individualized model of care.¹⁰ The DCS submitted The Roadmap as evidence. The Roadmap was developed by the provincial government to make plans to deinstitutionalize Nova Scotia’s care model. These changes were being made because the province committed to make these changes. They had to, in accordance with the CRPD. You might remember that this convention was ratified by the federal government in 2010. When something is ratified, it means that Canada is required to follow these rules. Therefore, the province of Nova Scotia has the duty to follow the convention and close institutions. Documents were submitted by the province to show the kinds of services and supports it offered to people.

Questions to Consider

• Did the province of Nova Scotia’s actions put three Canadians with disabilities at a disadvantage?
• Did the government limit these individuals’ access to the opportunities and benefits of living in community that the average Canadian enjoys?
• Were these opportunities denied because these three people had a disability?

Case Numbers One to Three

In the end, after days of heart wrenching testimony, Board Chair J. Walter Thompson stated that the province of Nova Scotia had indeed discriminated against each of the three survivors of Emerald Hall.

“In my opinion, the Province’s placement or retention of Joey Delaney, Beth MacLean, and Sheila Livingstone in the Nova Scotia Hospital and Emerald Hall was, in and of itself, prima facie discriminatory. The Province imposed disadvantages not imposed on others.”

— J. Walter Thompson Decision, Case H14-0418, 2019

“I am satisfied that Beth MacLean, Joey Delaney, and Sheila Livingstone suffered an adverse impact with respect to the services offered generally to disabled people through their long placement at Emerald Hall, the acute unit of a psychiatric hospital. Each was confined, against almost all medical advice … awaiting a placement in some other care facility. That, in my opinion, is all that needs to be said to persuade me of adverse impact.”

— J. Walter Thompson Decision, Case H14-0418, 2019

“I have no doubt that Joey Delaney, Beth MacLean, and Sheila Livingstone suffered an adverse impact through their placement at Emerald Hall … The are confined to Emerald Hall because neither they, nor their families, had the capacity to look after them and they were dependent upon the province. While in theory, a resident is free to go, Emerald Hall effectively became a custodial place.”

— J. Walter Thompson Decision, Case H14-0418, 2019

Sadly, Ms. Levingston died before this final decision was made. Ms. Maclean was moved from Emerald Hall and now lives in a small options home. Mr. Livingston remained living at Emerald Hall and is still awaiting for an appropriate home to become available to him.

Case Number Four

The Board Chair ruled that the province of Nova Scotia was not accountable to ‘the class’ or people with a developmental disability in general. Instead, he ruled that discrimination should be judged on an individual basis. The Disability Rights Coalition of Canada has made an appeal on this verdict. It would take years to put forward cases individually. This case is currently ongoing.¹¹

Want to explore further? Access more documents.
Read Inclusion Canada’s response to this verdict.

In Conclusion

What are the good things you enjoy in your life? What gives your life purpose? What brings joy to your life? What are you grateful for?

No matter how old you are, or where you live, everyone would agree that there are certain things that make our lives good. Having a home, relationships, love, community, some freedom and having purpose are things that most all humans want. ALL human lives hold unmeasurable value.

At some point in history, society forgot that the good things in life are important to people with disabilities and their families too. Even more importantly, at some point, we missed the opportunity to figure out how to best support people so they can enjoy these things in their lives. We missed this important step because we locked people away in institutions. This meant that we created a system that denies people of the important things that ALL Canadians need in their lives.

The testimonies you have heard show how life changed drastically for people after leaving institutions. People talk about how they have found more joy in their lives, learned new things, and feel good about having control over their lives. Believing that every person has value makes it harder to ignore people’s rights. Getting to know people and being curious about what they contribute to our communities will show us people’s gifts and talents. Respecting human rights and holding governments accountable for protecting them is very important.

As advocates, as Canadian citizens, we must continue to learn from people’s experiences and stand in solidarity with them. Only when we acknowledge shameful mistakes and challenge the status quo can we really influence what happens in the future.