Our Research Projects

Interviews

Interviews

Twenty-three First Nations participants with disabilities were recruited for individual semi-structured interviews. An additional six First Nations participants with disabilities joined us for a talking circle. All participants were referred by local service centres personnel or employees of the Regional Office who were familiar with the communities. Participants came from thirteen different communities (eight remote regions; five rural/urban zones) and three different urban centres. They represented six different nations. In addition to this, twelve front-line workers including employment counsellors, social development agents and adult education professionals were interviewed. Seventy-eight others participated in twelve talking circles and twelve other community members, including band council members and family members, were also interviewed. They were from eleven different communities (six remote regions, five rural/urban zones) and four different urban centres. They represented six nations. Moreover, consultations with the FNHRDCQ representatives were held during three regional meetings.

Logistics for the data collection

• Agents may have participated in talking circles or one-on-one interviews.
• Interviews were conducted in either French or English as requested.
• All of the interviews and talking circles were audio recorded with participant consent.
• The interviews were then fully transcribed by the University and CEGEP students on the CRISPESH team.
• The senior member of the partner’s team, then reread each of the interviews and made corrections as required to any language that was in question.

Semi-structured interviews were coded and analyzed to obtain categories of information relevant to the project. All interviews were recorded, transcribed, anonymized, coded and analyzed using Nvivo qualitative data analysis software.

• Interviews were read and coded for any content where participants mentioned anything related to the following four broad concepts:

1. If they identify with the term disability
2. What disability is or what defines disability
3. Any barriers encountered that present challenges, negative experiences, reduce or block positive outcomes for FNPWD.
4. Any facilitators that promoted growth, positive experiences, or positive outcomes for FNPWD.

• Each interview was coded by a minimum of five independent readers (including members of the FNHRDCQ and CRISPESH).
• The coded content from each reviewer was then combined into a master analysis document for each interview.
• Each member of the research team then abstracted themes from the coded text segments from each interview.
• The senior researcher then collected all these comments for every interview and analyzed these.
• To ensure the participation of First Nations collaborators at each stage of the data analysis, the research team invited the FNHRDCQ and its partners (FNQLHSSC and QNW) to the analysis meeting. The team took the abstracted themes and experimented with the various ways that they made sense and told a story when organized under different frameworks presented by the senior researcher.

The following section will report on the summary of the thematic networks that represent the culmination of the research process; the final interpretation of the patterns found in the qualitative analysis.

What does disability mean in First Nations Communities?

Data analysis revealed many themes that were present to a common understanding of what disability means in the communities.

Among our participants who were FNPWD, there was a distinction between emergent themes coming from participants who identified with the word disability and those who did not. This distinction led to a variation in the degree to which the negative aspects of definition of disability were internalized as a definition of the condition. Despite this difference in described degree, the elements of the definition of disability remained consistent throughout the interviews.

The participants who answered the question, “Do you consider yourself a person with a disability?” with the answers, “no,” and “not really,” made up approximately half of our FNPWD group.  We labelled this group FNPWD negatively identifying, and it included individuals that we at CRISPESH would term as having conditions that constitute disability such as limb amputation(s), total vision loss or blindness, mental health disorders, and developmental disabilities.

The second group of participants did at least to some degree, identify with the term disability, they answered the question, “Do you consider yourself a person with a disability?” with the answers, “Yes,” and “sort of.” We labelled this group FNPWD positively identifying, they also constituted the same diversity in disability type seen in the negatively identifying group and also included Learning Disability.

The third grouping included employment and counselling agents from the points of service throughout the First Nations communities served by the FNHRDCQ.

1. You Can’t Take Care of Yourself.

The first theme is that disability can be defined as the lack of ability to successfully perform the tasks of daily living or employment, necessary for independent living. Examples of tasks include cooking, cleaning, laundry, groceries, cooking for others, getting to appointments, and caring for children. The participants would often explain that they were not disabled because they could successfully perform these tasks and lived quite independently in doing so. The second half of this theme is that disability means you cannot participate in the workforce; you are unfit for any job. Of all of our participants from our FNPWD group who were unemployed, only one person expressed the idea that she would be in too much pain to work. All of the other participants expressed the desire to work and also had ideas about the types of jobs they would be qualified for or good at. Even if they were currently unemployed, most had held temporary, part-time or full-time jobs in their past and counted this as evidence that they were not disabled. This element of disability is intertwined with social assistance and the definition that is used to identify which people qualify for a specific type of monetary allowance or pension based on this status.

2. Real Disabilities are Visible.

The second theme is also closely related to the disability pension. Receiving a pension is a very concrete and visible support that is given to some people in the communities. It seems that the way that people understand who gets this support is as previously mentioned, the assumption that the person is not capable of caring for themselves, and the second is that a valid disability will be visible. Therefore, the second prevalent theme coming from the data is that a “real” disability must be visible. This was evidenced in comments which rejected mental health and/or specifically substance abuse disorders as “real” disabilities. Learning disabilities were largely unmentioned and developmental disorders were referred to only if they were extensive enough to be detected by others. These “real” and visible differences were also often referred to with a tone of sympathy or feeling of understanding in the interviews. This tone is in contrast to statements indicating a variety of more negative feelings such as judgment, resentment or impatience that were expressed when asked about mental health disabilities, especially addiction.

In the group of FNPWD who did identify with the term disability and in the interview data from employees, these themes were also present and integral to the definition of disability, although more in variations of degree. So for example, disability could mean a limited ability to live independently rather than the total absence of skills. It is helpful then, to consider these two themes as a spectrum, always present in the definition of disability, but to varying degrees throughout the entire dataset.

3. I Accept Myself for Who I am.

The third theme was self-acceptance. This theme emerged as a significant part of the majority of the interviews, including both the FNPWD who did and did not identify with the word disability.  The theme of self-acceptance was interwoven into stories of living day-to-day life with the same types of motivations, goals and relationships as everyone else. Part of self-acceptance was also described as not focusing on the condition in a way that it would primarily define the individual, causing them to feel unhappy, bothered or less than.  Our participants expressed that despite a range of reactions or responses from others, they were firmly rooted in the belief that they were a significant part of their various families, communities or peer groups and they had accepted themselves as they are. For many of our participants who did not identify with the word disability, the presence of their self-acceptance was considered as a significant factor that defined why they did not have a disability.

4. Adaptability Resulting in Resilience.

In a variety of contexts and settings, participants described experiences of the fourth theme, adaptability resulting in resilience. These generally fell into three types of experiences. The first is when the person keenly felt the effects of their disabilities, this could either be through personal sensations such as physical or emotional pain. The second is the result of  incompatibility between the person’s environment and their condition, for example a person with one leg facing a set of stairs. The third is when the person feels their condition really sets them apart from other people, they feel different. When the participants described either of these three types of situations, they then described a period of time where they did not know if they would be able to find a way around this, and depending on the length of this uncertainty, lack of faith in oneself, self-doubt or fear could also arise. However, consistently, participants shared stories of overcoming these challenging situations, and they shared with us the resulting feelings of renewed faith in themselves, as being successful and worthwhile. Themes of this type of resilience were prevalent and significant aspects of the lived experience of FNPWD.

5. There is a Need for Disability Specific Information.

The fifth theme emerged differently from the first three. The first three themes were articulated in the most intensive ways by FNPWD who did not identify with the word disability, this fourth theme was expressed in the most concerted way from FNPWD who did identify with the word disability and support professionals. This is a theme of a need for disability-specific information in the communities. Throughout these interviews, participants explained that they either felt or knew there was so much to be known about different types of disabilities, but that they did not have access to this information. Support professionals felt that this information would help them provide better service and FNPWD often mentioned this gap in regards to their own conditions. Participants were searching for information about official diagnosis, cause of the condition, possible treatment options, and strategies to help with day-to-day life and social inclusion. Participants with disabilities were searching for or wanted more information to varying degrees, but each articulated that if they had access to this type of information, they would take it. The perception on the effect of having this knowledge, was also a spectrum. The benefits were described as ranging from significant to simple and practical. For example, some described having more information as something that would significantly increase quality of life, reduce stigma and misinformation in the communities, as well as increase positive self-awareness. Examples of more practical implications were described as potentially being beneficial for learning new methods for making certain activities more accessible, easier, or less time consuming.

Not Able to Live Independently: Social Stigma

Participants with visible disabilities, expressed that they were constantly having to advocate for the chance to be able to take care of themselves and/or join in the workforce. Each person described their skills and interests and had ideas on possible jobs they would like to do, but felt that out of the limited number of jobs to go around, they were not a priority, and that people who did not have disabilities got preference and greater access to the available jobs.

Participants with invisible disabilities also described not wanting to disclose disability status, as it would lead to not getting a job or discrimination on the job. Only one participant with a disability who was employed described disclosing her disability and receiving informal accommodations or supports in the workplace. Another side effect of this perception was that if people did defy the belief and work or live independently with a disability, their disability status was questioned, “If you can work, you must not have a disability then.”

Disability Must be Visible: Social Stigma

Most participants told us of a common belief in the communities, that “genuine” disabilities were visible. Some of our participants believed this themselves. This belief created barriers for people who had invisible disabilities, such as mental health, learning disabilities, or some physical disabilities. Some of our participants with invisible disabilities described internalized stigma defined by feelings of blame or shame for the effects of their disability. Even in cases where they knew their disability could lead them to encounter significant barriers, they still felt their slower progress or poor outcomes were more the result of a character flaw than encountering a situation of handicap.

These participants frequently downplayed impairment effects including emotional or physical suffering, that they had experienced, although these effects were clearly significant. They also expressed feelings of isolation, because the way that they experienced many aspects of their life was not normal or common or at least was not presented as such in the community.

Unworthy of the Available Jobs

In many cases our participants explained that people with disability are not a priority for the jobs that are available in the community, but that instead, those jobs needed to be saved for people who did not have disabilities. It was only under special temporary projects with funds allocated for people with disability that employment was offered.

Need for More Disability-Specific Information: Leading to Social Stigma

Elements of lack of access to disability-specific information was also a theme which emerged in each of the barriers listed above. Participants expressed feelings of searching, for cause, for origins, or, for explanation but without access to the right types of search terms, or reliable sources of information, they are unable to find what they are looking for. Many participants expressed a sense of missing part of themselves as well as being misunderstood or even invisible to others.

Violence

The broad theme, which was described throughout interviews as a significant barrier to people with disability is violence.

We found that violence was manifested in the following ways:

• Physical: intergenerational past, family past, personal past, and when in foster care.
• Psychological: some of our participants were the victim of ableism or racism. Themes of discrimination based on disability status and/or cultural status were present in all interviews from FNPWD.
• Towards others: some of our participants were the perpetrators of violence (these situations were in conjunction with substance use)
• Towards self: some of our participants had suicidal thoughts, attempted suicide or engaged in self-harming behaviours.

Ableism

Participants described discrimination based on disability status, or ableism, as a significant barrier to inclusion. This phenomenon was present in varying degrees throughout all levels of social networks of participants. Sometimes this was experienced as teasing, harassment, or bullying within families or communities. Other times it could be described as a potential employer or band council openly questioning the worthiness or value of the FNPWD. These phenomena were experienced in a subtler way by people who would have their disability status questioned or perhaps would be mocked or teased about characteristics that are inherent to the disability condition. The degree to which participants experienced ableism could be related to the severity of their condition, if they had a supportive social network, or if they were facing a host of other risk factors such as poverty, abuse and/or intergenerational trauma, specifically having parents who were in residential school or foster care. Ableism also resulted in a secondary theme which is fear of disclosure. Many participants described experiences of feeling fearful to disclose disability status to family, friends, peers, employers and even support or health professionals. Disclosure could result in anger, fear or judgment from others.

A third theme stemming from ableism, was the frustration and burden of having to educate others. This theme is woven into the fifth theme of disability, which is a lack of knowledge about disabilities. Having to be an ambassador for disability and carrying the burden of explaining what disability is to others who do not know was always characterized as a negative experience. Participants who engaged in this type of behaviour, explained that it was necessary to either advocate for their own rights, or to demystify or counteract a faulty and potentially hurtful perception being expressed by others.  On the other hand, some participants described the hurtful and stigmatizing thoughts expressed by others, but not having the words, energy or self-esteem to defend their position at that moment, they did not speak up. Even worse, in some cases, they internalized that negativity.

Many participants experienced being excluded from recreational community activities, employment and some family activities because of ableism. These types of experiences were defined by the belief of others that our participants could not participate due to disability status, and they did not need to be there. Many participants described feeling alone and isolated, usually resulting from this type of exclusion. 

Racism

Racism was described as both systemic and on an individual level. Systemic racism was described in interactions between professionals or institutions and individuals, and the type and quality of care received were described as both inequitable and damaging. This type of racism was present in the accounts of the family history of our participants in Residential School, the personal past which may have included racism and abuse in foster care or public school. Or in the current lives of participants who were denied employment, housing or access to quality healthcare or disability treatment or support. In some interviews, participants described hospital stays as so negative as they chose to have a limb amputated as opposed to having ongoing medical treatment in the hospitals outside of their community. Others explained the difficulty in seeking mental health support outside First Nations as professionals were very unaware of the realities faced in the communities. Others shared stories of inequitable treatment in educational facilities, where decisions to place students from First Nations were inherently racist.

Individual experiences of racism were most predominantly told when referring to participants’ time in foster care. Of all the participants who told us of their experiences as children in foster care, only one had not experienced racism and was not abused, both verbally and physically. The other common but less predominant theme of racism was experienced by peers in public schools. Many participants explained how these experiences were directly linked to a pain that they carried and challenges with substance abuse and mental health that they experienced in adulthood.

In relation to this pain and perhaps tied into the theme of rejection and self-esteem, was the theme of violence directed toward oneself in the form of suicidal thoughts, self-harm or attempted suicide. These themes were also extremely high in our small sample.

The following themes emerged and were described as important in sections of the interviews where participants were describing the parts of their lives they were content and happy with and/or proud about.

Family Networks

Family support was seen as the foundation and primary element in successful life outcomes. This could be manifested in two ways. First, the family of origin was intact and strong, supporting the participant through many phases of life, including diagnosis, treatment and rehabilitation. Families were said to support participants in discovering the disability, finding helpful treatments and arranging day-to-day tasks such as transportation. The second way family support manifested was for people whose family of origin was no longer intact, healthy, or supportive, to rebuild a new family system with a spouse and children. This system was described as grounding and motivating to give their children what they did not have and break cycles of intergenerational suffering.

The Right to Be Included.

The idea that each person has the right to a place in the family and/or community despite disability status was essential to supporting self-acceptance and motivation to thrive. This is a clear facilitator for development, and despite the complex circumstances people experienced, each described a place where they were accepted. For some, this included their family, for others, family and community, and for others, it could be a town or city outside of the community where they have found acceptance. When participants were grounded in belonging, they explained how they could progress.

Community Networks

The ideas expressed about community networks were not experienced by all participants nor were all elements present for each individual, but the following points were described as useful by many participants across many communities.

With the help of trained support workers in Friendship or Community Centres, participants were able to engage in a rehabilitation process or to participate in training and learning programs. These centres provide the following types of support in a culturally sensitive community setting. The Community or Friendship Centres were said to offer the following types of support in an environment that is imbued in the culture of the community:

1. Promote peer relationships.
2. Fight isolation and loneliness.
3. Promote progress and provide support in day to day life or in times of great challenges.
4. Creating understanding, inclusive, welcoming environments.
5. Providing a place for participants to offer support in a variety of capacities, to be helpful and needed.
6. Offering participants, a chance to work with and provide support to people with whom they identify.
7. Offering cultural preservation programs and classes.
8. Arranging for transportation needs, when the person could not access transportation.

Disability is a concept that is heavily stigmatized with negative perceptions and misinformation coming from both within and from outside of the communities. This has a host of negative implications to FNPWD, which then ripples through their families and communities where they live. This stigma can lead to lack of access to employment and reduced opportunities for adult FNPWD to access labour markets.  To take a strong first step forward in rehabilitating the role of FNPWD in the communities, all tools and trainings should highlight the strengths of FNPWD and provide a strong, culturally sensitive, factual, and, empowering counter-narrative to the stigma.