Serious Problems Experienced by Diverse People with Disabilities: Western Canada

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Introduction

Background

Justice Canada, in partnership with other federal government departments and Statistics Canada, are working together to implement the Canadian Legal Problems Survey (CLPS). The CLPS will collect national data on Canadians’ legal needs and how those needs were, or were not, addressed, as well as the health and economic effects of these legal problems. It was anticipated, however, that, as a general population survey, the CLPS would have only a relatively small number of respondents from minority populations, and thus it would likely not be possible to report on these experiences. Officials therefore want to gather more information on certain groups, such as people with disabilities, to learn more about the kinds of serious problems experienced, the avenues people take to address these problems, the outcome, and the effect on their lives.

This report presents the results from research that was conducted during between March and June 2020 with people with disabilities living in the four western Canadian provinces – British Columbia, Alberta, Saskatchewan, and Manitoba. The primary objective of this study is to gather in-depth, qualitative data on the experiences of diverse people with disabilities who have encountered serious problems in the previous three years.

Research Methods

The data were collected through one-to-one interviews and focus groups. Due to the COVID-19 pandemic, all interviews and the one focus group took place over the phone or online. Twenty-five interviews in total were done with people with disabilities living throughout the western provinces. Interviews ran anywhere from 45 to 90 minutes long. The focus group had five participants, all living with an intellectual and/or cognitive disability. While in-person sessions are more accessible to people with intellectual and cognitive disabilities, due to the pandemic video conferencing was the next best option. Specific accommodations, such as online live chat platforms, were in place for deaf and hard-of-hearing individuals.

Promising Practices in the Recruitment and Interview Processes

In recognition that people with disabilities in Canada live with other experiences of marginalization, the recruitment process set out to engage a diverse intersection of people with disabilities. These included: women, men, gender-diverse people, older and younger adults, racialized, immigrant, Indigenous, 2SLGBTQ+,1 and low- and middle-income people. In addition, given that people live with many different types of disabilities, many with more than one disability, an effort was made to engage a diversity of experiences of disability, i.e., sensory/vision, intellectual, cognitive (brain injury), mental health, mobility, and deaf and hard-of-hearing disabilities.

The researcher mobilized key community-based disability, Indigenous, 2SLGBTQ+, and immigrant settlement agencies and community leaders in British Columbia, Alberta, Saskatchewan, and Manitoba to assist in identifying and recruiting people with disabilities for this research. The recruitment process largely relied on the support of these local population-specific agencies who, by providing front-line services, have established trusting relationships with their service users.

In order for community partners to feel confident that the research would be carried out in a respectful and culturally sensitive manner, it was important to establish that the research process would be based on an understanding of systemic intersectional discrimination and resultant trauma. With this in mind, the researcher spoke to local grassroots organizations that she has worked with in the past to explain the purpose of the research, privacy provisions, the interview and focus group processes, and the supports that would be in place for participants. Given the researcher’s past relationships with these local agencies and the explanation that the research process is grounded in understandings of structural oppression, they felt they could trust the process and were happy to reach out to their communities for potential participants.

Safety Planning

Potential research participants were also encouraged to contact the researcher before the interview. If a person indicated that they had anxiety issues, pre-interview calls and/or online chats were set up to clarify expectations, prepare them for the questioning process, and provide an opportunity for participants to ask questions. A key component of these preparatory discussions was the co-development of a safety plan in which:

• The participant informs the researcher how they wish to be supported should they become upset by the discussion;
• The research participant feels confident that they hold the decision-making power in not answering questions that they do not wish to answer;
• Support breaks can be taken when needed; and
• Post-interview calls would be available if participants wanted to add or retract information.

The researcher also found that it was a good idea to inquire ahead of time if people felt comfortable and safe at the location where the phone interview was to take place. This is particularly important if someone wishes to share their experience of violence, as they may currently be in an abusive situation. This did occur in a few instances and it was determined that an online chat method would be the safest method of conducting the interview. It was important to assist those participants in erasing their phone or computer activity after the interview.

Scheduling

Some important learnings occurred while scheduling the interviews:

• Interviews should be held in the afternoons, because additional time may be needed in the mornings for primary care. In addition, some people take medication that requires them to sleep longer in the mornings.
• It is good practice to be cognizant and sensitive to people’s primary care schedules when booking interviews.
• Inquire if there are any costs associated with a phone interview, because some people cannot afford data charges. Therefore, a Voice Over Internet Protocol service provider, such as WhatsApp, may need to be used.
• The majority of people do not have the capability to sign, scan, and send back the letter of consent electronically. In fact, this requirement may prevent them from participating in the study. Thus, a process was developed where they simply had to read and reply to an email version of the letter of consent. This option was well received.
• Some people may need a support person during their interview due to memory problems associated with a cognitive disability or to enhance their feelings of safety. It is a good idea to ask if people would like to have a support person during the interview.

Sensitivity During the Interviews

As is quite evident, many people with disabilities have experienced trauma in their lives, particularly if they are a woman, Indigenous, Black/African, racialized, or from a 2SLGBTQ+ community, due to systemic discrimination and experiences of violence, including the violence of colonialism and racism. Given this reality, people may be triggered by something during the interview that may or may not relate to the topic of discussion. The researcher found it important to demonstrate her understanding and to validate their expression of pain, while gently de-escalating their emotional response and redirecting them to the questioning process. It was also a good idea to ascertain whether or not the person has follow-up support and, if able, to direct them to services and supports in their community.

The researcher aimed to create a safe environment to put participants at ease and found that by using affirming, non-judgmental language, being comfortable with long pauses and silence, and conducting a “check-out” at the end of each interview, participants felt less anxious.

It was important not to adhere rigidly to the questioning format and sequence as outlined in the Interview and Focus Group Guides.2 The questions outlined in these guides were effective in eliciting the information being sought; however, the interviews were most successful when the researcher was reflexive and responsive to the flow of the discussion by adapting the sequence of the questioning and readjusting the wording for clarity where necessary.

The focus group with participants labelled with a cognitive and/or intellectual disability was more successful than anticipated. The researcher felt that in-person focus groups for people living with these disabilities were critical to create an environment of peer support, to increase and control safety, to allow more time for discussion, and allowed the opportunity to provide a meal – something that is really welcomed by people living in poverty. In addition, there was hesitation around the accessibility of technology required for a virtual discussion group. However, the group went surprisingly well due to the preparation process that occurred before the session, which included testing Zoom with each participant ahead of time and organizing support people to be available with participants online and in person.

The focus group questions were delivered in plain language, i.e., presenting one idea at a time, using shorter sentences, and sharing examples that were relevant to participants’ lives. Focus group participants were also told at the beginning of the session that they could raise their hand when they needed the facilitator to slow down and/or when they did not understand a question or word. This occurred a few times during the focus group. Most of the particpants contacted the researcher after the focus group indicating their enjoyment of the discussion and their hopes to be able to organize another session in the near future.

Respondent Profile

In total, 30 people participated in this study. They represented different marginalized populations and a wide range of physical and mental disabilities. The following offers a breakdown of the respondent population, delineating our success in achieving the diversity sought.

Socio-demographic Observations

Although we cannot arrive at empirically-based conclusions about certain cohorts, we can identify common experiences that emerge by socio-demographic category. This section outlines and describes the socio-demographic characteristics of the study participants.

Highlights

• Compared with the general population (GP), marginalized groups were over-represented. For example, 67 percent female/ 31 percent male (GP – approximately 51 percent female/49 percent male); 31 percent Indigenous/52 percent white (GP – 5 percent Indigenous/73 percent white); 28 percent 2SLGBTQ+ (GP – 13 percent). 3 This is important because there are more barriers to engaging marginalized people in research projects and thus their voices are often absent in the results.
• Disability: Of the respondent population (RP) 21 percent had both a physical and mental disability, with the vast majority of the RP (76 percent) living with an intellectual, cognitive, and/or mental health disability. Three-quarters (76 percent) of the participants identified having a mental health, intellectual, or cognitive disability. The breakdown can be found in Table 4 above. This over-representation of people with intellectual, cognitive, and/or mental health disabilities is also important because these populations experience greater marginalization than people with physical disabilities, i.e., higher rates of violence.
• The majority of the respondent population was unemployed, yet were educated (69 percent had a post-secondary education).
• The vast majority of respondents indicated that they had a very low income, with a few participants identifying themselves as middle class.
• A variety of age groups participated in this study.

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