Photo by Daria Obymaha
By Louise Kinross
A large body of research shows mothers of disabled children have poorer mental and physical health. A new study published in the Journal of Health and Social Behavior finds that the relationship between poor maternal health and a child’s disability exists only in families with low incomes. Laurin Bixby, a PhD candidate in Sociology at the University of Pennsylvania, analyzed self-reported health of mothers of children with and without disabilities when those children were aged five, nine, and 15. The data was pulled from a longitudinal study that followed almost 5,000 families with a child born between 1998 and 2000 in large American cities. The health disparity between mothers of children with and without disabilities disappeared in families with higher incomes. We did this interview on e-mail.
BLOOM: Why was there a need for this study?
Laurin Bixby: There is a common narrative in prior research that disabled children are a burden on their parents and families, and disability itself is often blamed for the unfavourable health outcomes among mothers of disabled children.
This study was needed to challenge the problematic assumption that disability is inherently negative or burdensome and to consider the social factors that shape the health inequalities between mothers of disabled and nondisabled children. Rather than perpetuating the ableist rhetoric that disabled children are burdens on their families and communities, this study argues that researchers and policymakers must focus on how ableism and poverty burden disabled people and their families.
BLOOM: You looked at something called household income-to-poverty level. Can you explain that in simple terms? What would be considered a low-income household?
Laurin Bixby: Household income-to-poverty level is a measure of total household income as a percentage of the federal poverty level in the United States. A household is considered low income if their household income is below 200 per cent of the federal poverty level. A household with income 200 per cent of the federal poverty level or above is considered higher income.
I do want to clarify that a household income 200 per cent of the federal poverty level is not a high income; rather, the study uses the terms higher income or higher socioeconomic status as relative terms referring to households with incomes that are higher than low-income households. Currently, 200 per cent of the 2023 federal poverty threshold for a family of four would be an annual income of US$55,500.
BLOOM: How did this study work over three time periods?
Laurin Bixby: The data for this study comes from the Future of Families and Child Wellbeing Study. It followed the same children and their families over time, from when the child was born through age 15. Families were first surveyed when the child was born, and then follow-up surveys were gathered when the child was one, three, five, nine, and 15 years old. In my study I used data from the three most recent time periods: years five, nine and 15.
BLOOM: What were your key findings?
Laurin Bixby: The relationship between early childhood disability and maternal health depends on a family’s access to socioeconomic resources. I found that mothers of disabled children had worse health than mothers of nondisabled children among lower-income families. But there was no difference in health between mothers of disabled and non-disabled children among families with relatively higher incomes.
Programs and policies have failed to meet the needs of disabled children and their families, and this has been particularly harmful to the health of mothers with fewer socioeconomic resources.
BLOOM: Were you surprised by any of the findings?
Laurin Bixby: The relationship between children’s disability and maternal health is very well-documented in previous research, so it was a new finding that this relationship does not exist for all families.
BLOOM: What does this study tell us about why mothers of disabled children may have worse physical and mental health?
Laurin Bixby: It tells us that it is ableism, not a child’s disability, that drives the worse health of lower-income mothers of disabled children.
Raising a disabled child in the context of social and structural environments that fail to meet the needs of disabled children and their families has resulted in worse health among mothers with fewer socioeconomic resources. Dealing with the extra costs associated with disability, the lack of government support, and the institutional barriers that make it difficult for families to meet the needs of their disabled children may be particularly challenging for mothers with limited time and money.
BLOOM: It makes sense to me that with greater financial resources, a family’s options for getting the child’s and parent’s needs met are so much better. But affluent mothers still have to face ableism that suggests their child is less valuable. How does more income help a mother cope with social marginalization?
Laurin Bixby: Mothers, regardless of socioeconomic status, experience ableism and social marginalization, but more affluent mothers may be able to leverage their time and financial resources to avoid or ameliorate the health consequences of this marginalization.
For example, more affluent mothers are better equipped to balance work and family life by outsourcing housework, leaving the workforce, or having more control over their work schedules, which is often necessary for parents dealing with the additional time and costs associated with raising a disabled child.
More affluent mothers can use their greater social, cultural, and economic capital to navigate financial and bureaucratic challenges in health care or education systems, and to gather necessary resources or supports for meeting their disabled child’s needs.
BLOOM: Recently there have been Twitter threads by mothers of more complex adult children who talk about having to leave the workforce when their child leaves high school. This is at a time when mothers are older, probably more burnt out, and their peers are becoming empty nesters. Is anyone doing research on the health of these mothers?
Laurin Bixby: Marsha Mailick at the University of Wisconsin-Madison has been a leader in this area, with research on the health and wellbeing of mothers raising adult children with disabilities. Others that come to mind include Jan Greenberg, Jinkuk Hong and Jieun Song, also at the University of Wisconsin-Madison; Nancy Miodrag and Robert Hodapp at Vanderbilt University; Frank Floyd at Georgia State University; and Susan Parish at Virginia Commonwealth University.
BLOOM: How did you personally get interested in this work?
Laurin Bixby: Most of the work on disability and families has been led by nondisabled people, but I come to this work with a different perspective as a disabled person myself. I was very unsettled by the nearly unquestioned assumption in previous research that disability is a burden.
While I am quite familiar with the high costs and care needs that can come with being disabled and the challenges that families with disabled children must navigate on a regular basis, I also know that the frustrations that I encounter are due to ableism, not disability. Much of the previous research that was trying to understand the relationship between children’s disability and maternal health had not given enough attention to the role of ableism or a family’s socioeconomic resources.
BLOOM: What are next steps for you and your research?
Laurin Bixby: Future research could look at how socioeconomic status impacts the relationship between children’s disability and maternal mental health outcomes, or what this relationship looks like among mothers with adult disabled children. I am currently entering my final year of my doctoral program, so I am in the midst of working on my dissertation.
In my dissertation, I examine socioeconomic inequalities at the intersection of disability, race-ethnicity, gender, and age among adults in the United States. I also examine how disparities in socioeconomic wellbeing between disabled and nondisabled adults vary across states in the U.S. and how state policy and political contexts shape these disparities. Though my dissertation work is not specifically focused on families, the findings certainly have implications for families raising disabled children.
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This piece originally appeared on Holland Bloorview’s website. Holland Bloorview Kids Rehabilitation Hospital is proud to acknowledge and celebrate Louise Kinross, BLOOM editor and special projects manager, as a recent recipient of the 2023 Tribute Award for Advocacy presented by Empowered Kids Ontario (EKO). The award recognizes the contribution and impact of leaders and role models committed to advancing child development...