Nothing About Us Without Us: Representation of People with Intellectual Disabilities and Their Interests in Parliament.

• Author: Cossette, Amelie

Introduction

Every day, people with disabilities around the world face many barriers to exercising their basic human rights in all kinds of situations. In fact, the United Nations has stated that people with disabilities are the most disadvantaged minority in the world, not to mention the largest. (1) Canada is no exception.

In recent years, steps have been taken to promote the inclusion of people with disabilities, but discrimination remains an all too present phenomenon in their daily lives. Do policy makers truly understand their situation? This article explores how people with intellectual disabilities and their interests are represented in the House of Commons and in the offices of Members of Parliament (MPs).

First, I provide an overview of the research process in order to contextualize the importance of this research. Next, I present a snapshot of the current situation in Canada. Then, I analyze the findings from the interviews conducted as part of this project. Finally, I propose recommendations on how to make the House of Commons more inclusive. All of this will be based on an approach centred on respect for fundamental human rights.

This article is an abridged version of a much longer research paper. In order to adhere to space requirements, a literature review has been condensed and the number of answers to my research questions have been reduced.

Approach

It is important to note that the experiences of each individual with an intellectual disability vary greatly depending on the level of disability, their living environment, and the resources available to them. (2)

Individuals with an intellectual disability face a great deal of prejudice because, in general, the public tends to focus on their limitations rather than their potential. When it comes to employing a person with an intellectual disability, many hiring managers are not any different in their perspective.

Misunderstanding the nature of disability is also present within the political sphere. For example, during debate over Bill C-7 it was apparent that many MPs failed to understand the realities of people with disabilities. Bill C-7, the proposed legislation to expand medical assistance in dying, was recently passed in the House of Commons. The Bill passed without the amendments to protect individuals with disabilities that many disability rights organizations had been calling for, resulting in an open letter with 147 signatures in opposition to the Bill. (3) The unaddressed concerns of these organizations sparked my interest in studying representation of persons with disabilities in the House of Commons and MPs' offices.

The socio-economic conditions of people with intellectual disabilities and the difficulties they face in participating in the democratic process are well documented, but there is little information regarding their representation in the House of Commons. This research attempts to add this aspect to the existing literature.

Methodology

In order to provide an accurate overview of how individuals with intellectual disabilities and their interests are represented in the House of Commons and in the offices of MPs, I explored the factors that make it difficult for people with intellectual disabilities to integrate into these work environments. Moreover, I examined whether there are measures in place to make it easier to include people with intellectual disabilities in the Canadian political system.

This research is based on qualitative methods, including a literature review and semi-structured interviews. A total of eight interviews were conducted in May and June, 2021. The individuals selected to take part in this process all have relevant experience with intellectual disabilities; either within civil society, research institutes, the House of Commons and the Senate, or elsewhere. An individual with Down syndrome working in a senator's office also participated in this project. The interviews generally consisted of seven substantive questions, each tailored to the subject's own expertise and a final open-ended question to provide space for additional comments on the subject matter.

The findings presented in this article provide a basis for better understanding how people with intellectual disabilities are represented in the House of Commons.

Defining Terms

Disability is an "evolving concept," as recognized by the United Nations in the preamble to the Convention on the Rights of Persons with Disabilities, which was adopted in 2006 and came into force in 2008. This convention provides the following definition of "persons with disabilities":

... those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (4) The focus is on the barriers that individuals with disabilities face, rather than their abilities and limitations. This approach to the concept of disability is based on a social, rather than a medical model, as has long been the case. (5)

In 2019, the Government of Canada adopted the Accessible Canada Act, which defines "disability" as:

any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment--or a functional limitation--whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person's full and equal participation in society. (6) Canada has a long history of discrimination against people with disabilities, closely linked to colonization. Before the medical and institutional view was imposed, Indigenous peoples' traditional view of disability was much more positive. People with disabilities were an integral part of the community and often held special roles, without being socially stigmatized. (7)

According to the Quebec Intellectual Disability Society (QIDS), an intellectual disability is diagnosed when significant limitations in intellectual functioning and limitations in adaptive behaviour are observed before the age of 18. (8)

Ableism, derived from the word "ability," is a key concept in understanding the various realities of individuals with disabilities in Canada, including those with intellectual disabilities.

The Ontario Human Rights Commission states that ableism is:

analogous to racism, sexism or ageism, [and] sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others. Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society. It can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities. (9) This view is shared by many authors, such as Ostiguy, Peters and Shlasko: "Like other systems of oppression, ableism operates on many levels, including institutional policy and practice, cultural norms and representations, and individual beliefs and behaviors." (10)

A Snapshot of the Situation

According to the 2017 Canadian Survey on Disability conducted by Statistics Canada, 22 per cent of Canadians, or approximately 6.2 million people, have at least one disability. (11) The QIDS estimates that between one to three per cent of the population is affected by an intellectual disability, which is believed to be the most common developmental disorder. (12)

According to Ready, Willing and Able, a national employability program for people with intellectual disabilities or an autism spectrum disorder, there are approximately 500,000 working age adults in Canada in these groups, while only one in four is currently employed. (13) Statistics demonstrate that...