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November 28, 2023

Researcher Spotlight: Margaret Campbell on Families, Disability, and Wellbeing

Margaret Campbell discusses her research on the wellbeing of families with disabilities in Canada.

November 28, 2023

Emily Kenny

Margaret Campbell is a Mitacs postdoctoral fellow affiliated with the Vanier Institute of the Family and Queen’s University. She has a PhD in Social and Cultural Analysis from Concordia University. Margaret is an advocate for the rights of persons with disabilities and has authored several articles that champion changes that would allow Canadians with disabilities to fully participate in key domains of social life.

Dr. Campbell recently joined Emily Kenny from the Vanier Institute to discuss her research on the wellbeing of families with disabilities in Canada.

Tell us about your research on family diversities and family wellbeing, and some of the things you have learned in the process.

Shortly after beginning my postdoctoral fellowship at the Vanier Institute, I started researching wellbeing outcomes for families with disabilities. This is important research because people with disabilities are marginalized in society. They face barriers to participation in key areas of social life such as education, housing, and employment. I was interested in understanding how these broader inequalities that people with disabilities navigate every day appear within family life and how they impact family wellbeing outcomes. That led to research exploring how families with disabilities are faring in terms of their collective wellbeing.

Unfortunately, the research on wellbeing among families with disabilities in Canada shows that they have to navigate many inequities. Compared with families without disabilities, they tend to have lower levels of material wellbeing. This refers to families’ resources, such as income, shelter, and food. Families with disabilities are also at a greater risk of living in poverty and many struggle to meet their family’s needs.

Some of these challenges arise because these families have more demands on their time due to the additional roles they need to take on within their family. Similarly, families with disabilities often manage expenditures associated with caring for their disabled family member, such as specialized health or rehabilitation devices, assistive devices, or home modifications.

This can create tension and conflict between the demands of paid employment and the care work that needs to be done within these families. In many cases, the primary caregiver—often the mother—reduces their workforce participation, either by taking on fewer hours or leaving the labour force entirely. This results in reduced income for their family’s material wellbeing needs. This can also impact their own sense of wellbeing, as working outside the home and having connections in the workforce can be important for personal wellbeing.

Another concerning finding is that many families with disabilities are more isolated from society compared with non-disabled families. They face ableist attitudes that lead to exclusion and isolation. A lack of accessibility in built environments also contributes to this isolation, as common spaces such as community centres and playgrounds may be inaccessible to them.

These are just some examples of the challenges faced by families with disabilities in terms of their material wellbeing and social integration. They may also lack specialized support services that could help them integrate more fully into communities and alleviate some caregiving duties.

I would like to highlight an interesting concept I came across during my research, known as the disability paradox. The term is often used by researchers studying disability and wellbeing. It describes the discrepancy between the limitations that are associated with living with a specific disability or health condition and the reasonably high, and sometimes excellent, quality of life reported by people with disabilities. This concept sheds light on the complexities of this research.

On the one hand, there are inequities in wellbeing but, on the other hand, it is evident that many people with disabilities still report having a good quality of life. The disability paradox emphasizes the low cultural expectations society holds for people with disabilities and their families. We often assume that their lives must be difficult, miserable, or ridden with illness and complexity. Yet, this paradox shows that people with disabilities do lead fulfilling and healthy lives. It also underscores the importance of truly listening to people with disabilities, and of valuing and learning from their experiences.

Growing up on a family farm in rural Prince Edward Island and living with a chronic illness have influenced your research interests. How have these experiences shaped your perspective on family diversities and wellbeing?

I think as researchers and educators, whatever we do in our lives, it’s important to reflect on why we are doing it and what brought us here.

My interest in these topics is both personal and political. It feels personal because I have firsthand experience of being a woman in academia and navigating research with chronic illness. But it also feels political because I use my work to challenge ideas about gender, disability, family, and ideas about human worth. I question who is deemed to have a “livable life” and which lives are considered “worthy” of support and facilitation. This personal-political connection aligns with a fundamental feminist principle that what we do may be personal, but that is also inherently political.

In most of my work, I strive to highlight the contributions of people with disabilities, whether they are academics, activists, or artists. This is crucial to me because the contributions of people with disabilities are often overlooked or not fully recognized, not just in academia but also in media and public policy.

Reflecting on my own background of growing up on a farm in Prince Edward Island, I have developed an interest in families, particularly those facing higher risks such as stress or traumatic exposure. I was very fortunate to grow up on a family farm, as it offered me a lot of amazing experiences. However, with reflection, I can see how my family faced challenges that stemmed from the farm. Farming involves long hours dictated by seasons and factors beyond our control, as well as an increased risk of injury and elevated stress levels.

Under the guidance of my supervisor, Dr. Heidi Cramm at Queen’s University, I have learned to view these issues through a critical occupational health lens. While I don’t want to draw a direct comparison between farming and military service, my background in farming has given me a small window of understanding into what it’s like to have had a family life experience structured around the risks and demands of a specific sector in which your family or parents work.

This reflection has deepened my understanding of where my interest and passion for these issues stem from. It often lies in the personal and political connections I have with them.

Your PhD thesis focused on the diverse ways that people with disabilities make sense of their sexual health and expression. Could you share some of the main barriers they face in this regard and how they navigate these challenges?

Unfortunately, participants in this study faced a variety of barriers that notably affected their sexual health and expression, romantic activity, and fulfillment in family life.

One of the largest obstacles reported by participants was exclusion from sex education, both in formal settings like schools and informal settings such as casual conversations among peers. Some participants received no formal sex education, possibly because they were exempt from physical education classes, where sex education was offered. Consequently, they were overlooked when considering the inclusion of sex education for their needs. Other participants who did receive some form of formal sex education felt that it did not address people with disabilities, and they couldn’t relate the information to their own experiences.

Another barrier mentioned earlier is the issue of inaccessibility. Many participants expressed how commonly used spaces for dating and romance, like bars, restaurants, and theatres, were often inaccessible to them. Planning a date or engaging in romantic activities became challenging, as they had to consider accessible spaces. Moreover, sexual health clinics were not always accessible to individuals with disabilities, making it difficult for them to access necessary services like screenings and testing.

The last barrier I’ll touch on is the ableist attitudes of others, which is perhaps the most pervasive barrier. Almost every participant in the research encountered attitudes and beliefs that positioned them as uninterested in or incapable of having sexual and romantic relationships. Peers, parents, and teachers implicitly or explicitly conveyed messages discouraging their participation in romance, dating, or sex. These participants had to confront and challenge these sentiments and attitudes.

It’s important to acknowledge that participants did not passively accept these barriers. Many participants involved in this research demonstrated resilience in navigating them. For instance, some participants sought information and education on sexual health online or from alternative sources. They also took it upon themselves to educate others on the topic. Some participants rejected the desexualized assumptions imposed on them and asserted their right to a fulfilling romantic and sexual life. Recognizing the ways in which these individuals negotiated, challenged, and broke down barriers was a crucial aspect of this research.

As an advocate for the rights of persons with disabilities, what changes do you believe are necessary to ensure their full participation in key domains of social life?

I believe we are currently experiencing many interesting changes in this field. It’s an intriguing time because those involved in advocacy, research, and policy development are eager to witness the impact of the relatively recent Accessible Canada Act of 2019 on the lives of Canadians with disabilities and their families. This Act represents one of the first comprehensive federal legislations, and I’m particularly interested in seeing how it will be enforced.

The reality is that the proportion of Canadians with disabilities is increasing, largely due to our aging population and the well-established link between aging and disability. As we age, the likelihood of experiencing a disability increases. Therefore, when considering policy implications, we must acknowledge the need for a greater number of robust policies aimed at supporting the needs of Canadians with disabilities.

These policies should address inclusion in the workplace, ensure that people with disabilities do not slip through the cracks between provincial and federal legislation, and cover healthcare measures. However, it is crucial to note that the development of these policies must involve meaningful input from persons with disabilities. The disability rights community has long emphasized the principle of “nothing about us without us,” reminding us that a diversity of people with disabilities should be actively involved in the creation of laws, policies, and interventions. Canadian society would benefit from having more people with disabilities in leadership roles or positions of influence, since they are currently underrepresented across society and excluded from decision-making processes.

Our thinking about these issues should reflect the realities of people with disabilities, and we should adopt an intersectional and diverse approach. It is essential to recognize that not all families with disabilities have the same needs or experiences. We must resist simplifying the complexity of disability and acknowledge the necessity for tailored individual supports. Additionally, we should consider how different forms of discrimination or oppression, such as sexism, racism, or homophobia, can intersect to create diverse experiences for families with disabilities.

That’s why the Family Diversities and Wellbeing Framework established by the Vanier Institute is crucial to this work. When developing new policies, we should be mindful of not only ableism and disability-related issues but also factors like race, socioeconomic status, gender, and sexuality. Taking these considerations into account is essential as we take on the challenge of shaping inclusive and comprehensive policies.

In your opinion, what are some of the emerging or most pressing issues related to family diversities and family wellbeing that researchers and policymakers should address?

During my research, I observed a concerning trend of overlooking parents with disabilities. When we consider the diversity within families with disabilities, it’s important to recognize that this includes families with one or multiple children with disabilities, as well as extended relatives such as grandparents or parents with disabilities. However, the literature in this area is severely lacking and we have insufficient information about the wellbeing outcomes of parents with disabilities. As researchers and policymakers, we should pay attention to this gap and learn from the experiences of these parents.

In terms of service provision and care, we often have a simplistic view where care flows in one direction, such as a parent providing care to a child. However, families headed by parents with disabilities challenge this notion of care as they both give and receive care, and they have specific needs that we have yet to fully understand. By studying these families, we can expand our understanding of care work and wellbeing within these contexts. This is an important challenge that I hope to tackle in future work by focusing on the needs of parents with disabilities, who unfortunately tend to be underserved.

Parents with disabilities also face assumptions that undermine their competency as parents. Parents with disabilities may be hesitant to reach out for support because of these assumptions and fears that their children will be taken away from them. These fears are not unfounded, given that single mothers with disabilities are at a higher risk of state-imposed family separation. These parents are undeniably underserved, and we need to prioritize service provision for them and thoroughly examine their needs.

In summary, there is a pressing need to delve into the experiences and needs of parents with disabilities, who have been largely overlooked. By doing so, we can address the existing gaps in service provision and better support these families.

What are your future research plans or areas of interest within the field of family diversities and wellbeing?

Another issue I want to emphasize is that the measurement of family wellbeing among families with disabilities often does not include their input. It is important for us to consult these families and understand what wellbeing means to them. This task should be undertaken by a range of researchers, institutions, and policymakers.

In the literature, there is a tendency to apply able-bodied standards of wellbeing to disabled families without conducting the necessary research to investigate what wellbeing truly looks like for families with multiple disabilities or those headed by a parent with a disability. Therefore, we need to take a step back and include people with disabilities in research on their wellbeing outcomes. This inclusion must be meaningful, drawing on their lived experiences, and recognize their capabilities and expertise in this area.

I must add that it’s essential to remember that many people with disabilities lead fulfilling lives. It’s the environments they inhabit and the negative attitudes they encounter that can impede their wellbeing. We need to shift the conversation and acknowledge this complexity, which can be a challenging task.

Emily Kenny is a Knowledge Broker at the Vanier Institute of the Family.