Disability and the Changing Contexts of Family and Personal Relationships: Volume 15

This article features four disabled artists who are parents and center on their balance of artistic practice and family. As a disabled artist considering starting a family and becoming a parent, the question of balancing artistry with a child has been a consistent thought and inquiry. Especially as a disabled artist wrestling with the realities of managing one's bodily needs with a career and personal life, I realize it will be a challenging yet rewarding adjustment. Furthermore, artists often lead atypical work lives with atypical working hours, which can sometimes lend itself to parenting and take away from it in other ways. With the resultant interviews and article, I aim to provide critical insights into practicing disabled artists' viewpoints on parenting, ranging from the challenges to the dividends. I hope these insights will support a singular view of disability parenting and artistry, as well as the Journal's goal of a new paradigm in disability scholarship overall.

This article studies a court case heard by the European Court of Justice in 2008 concerning employment discrimination faced by the mother of a disabled child. This case illustrates the search for a fair balance between informal care work and employment in a market economy is a fresh perspective. The very terms of social justice must be recast for the implementation of a more caring society wherein informal caregivers must be recognized as very often constituting a socially disadvantaged group. The development of a caring society requires a more comprehensive examination of power relations between informal caregivers and care recipients or resulting from care activities. Most analyses of care activities reveal a social reality involving structurally unequal agents. Among these are informal caregivers who face situations of inequality, which will not be overcome as long as care continues to be seen through the category of dependency, unilaterally assigned to those on the receiving end of care.

The COVID-19 pandemic exacerbated food insecurity and insufficiency in the United States. However, the causes of food insufficiency among people with disabilities during the pandemic are not well understood. This paper examined how loneliness and household structure are associated with food insufficiency among working-age adults (ages 18–64) with disabilities during the COVID-19 pandemic. Using 2021 National Survey on Health and Disability data, we conducted logistic regression to estimate the association between loneliness, household composition, and food insufficiency. Measures of household structure, such as the number of children in the household and living with other adults, were not associated with food insufficiency during the COVID-19 pandemic. Secondary analyses found that loneliness had a strong association with food insufficiency for those who live alone. Respondents who lived alone and reported feeling lonely had the highest odds of being food insufficient during the pandemic. Our findings indicate that in addition to household structure, it is important to assess psychosocial well-being, such as measures of loneliness, when examining food insufficiency among working-age adults with disabilities.

In this chapter, we explore the intricate relationships between young disabled children, their families, institutional settings, and disability services in Canada, with an emphasis on the challenges stemming from unstable custodial dynamics and governmental interference. Drawing on data from a 9-year longitudinal Institutional Ethnography across three provinces and one territory, we analyze the experiences of 41 families who have interacted with the child welfare system, foster care, adoption processes, family courts, or other custodial procedures – many of them are Indigenous or live with low income. The historic and ongoing state control and institutionalization of disabled children in Canada are interrogated through the lens of settler-colonialism (Awj, 2017; Disability Rights International, 2021). This chapter scrutinizes constructs framed by colonial narratives, including disabled childhoods, notions of disability, the “best interest of the child,” the archetype of the “good parent,” and the designation of custodial “status.” We present Institutional Ethnography as a method of de-constructing these systems and identifying care principles in the changing context of family.

This paper draws on 26 in-depth interviews with people living with type 1 diabetes (T1D) to explore how experiences and interpretations of disability redirect and transform reproductive trajectories. I apply Almeling's conceptualization of reproduction as the “biological and social process of having or not having children” as a framework for understanding what occurs at multiple analytical layers (structural and cultural, interactional, self, and body) across the life course and influences how and whether people with disabilities feel having children is something they want or need or is within their reach. Findings reveal the lasting impact of viewing the film Steel Magnolias, pivotal interactions with healthcare providers, and interpretations of embodied T1D experiences as major sources of tension for participants as they reflect on their reproductive trajectories and outlooks. Considering especially the structural and cultural layer, this paper enriches our understanding of disability by demonstrating that both women and men with less noticeable or visible disability are subject to similar social imperatives of risk management and moral reproduction as those with more noticeable physical or sensory disabilities, although gender also matters for how participants experience these imperatives. Findings lend support for viewing reproduction as a lifelong process beyond the sequence from conception to birth, as some significant disability experiences that transform or redirect reproductive trajectories fall outside this timeframe.

The purpose of this study is to highlight the need to develop and expand specialized support for people with ASD, examining the effect of these services on their families' quality of life. Despite efforts to promote diversity and equal opportunities for people with disabilities, Cyprus faces challenges in various levels such as in society, education, and employment. Unlike other countries, there is limited literature and data on adults with ASD in Cyprus, which prevents from forming an accurate assessment of their needs and the impact on their quality of life. Further, as a European Union Member State, Cyprus has restrictions on specialized programs and benefits, which makes it difficult to fully implement the UN Convention on the Rights of Persons with Disabilities (CRPD). This led to a lack of effective support services for adults with ASD and their families. Consequently, parents express concerns about the support that will be available for their adult children in the future. This study uses qualitative data obtained through the constant comparative method and is part of a larger project that includes both quantitative and qualitative research methods. The study presents important issues such as the positive impact of services on these adults and their families, families' concerns about specialized support and programs for people with ASD, and their relationships with their parents. The results are expected to raise awareness, promote social policy development, and improve the quality of life of people with ASD and their families in Cyprus.

Parents of children with intellectual and developmental disabilities are frequently given news that is difficult to hear and can be very traumatic. Whether receiving an initial diagnosis for their baby or learning about guardianship options for their adult child, emotional reactions almost always occur, especially because of the interdependent relationship they have with their child. These emotions likely impact the meaning parents give to information and decisions they make for their children throughout their lives. Medical, education, and other support providers sometimes assume parents can objectively receive information that frequently is communicated in a technical and clinical way. They may not give parents the time to emotionally process what they have learned, limiting their ability to care for their child. This chapter presents the results from a series of focus groups with 21 parents of children with intellectual and developmental disabilities of varying ages. The participants discussed their emotional reactions to information communicated to them about medical, educational and social concerns related to their children. In addition, they discussed how emotions impacted their information processing and sensemaking as they gave meaning to what they learned. Analysis of the results identified eight emotion-based information processing and sensemaking themes that are described in detail. The discussion section provides an enhanced explanation for emotion's role in parental information processing and sensemaking. In addition, recommendations for providers communicating emotional information to parents are provided.

This chapter explores how the intersection of disability and family has evolved in the US medical field over the 19th, 20th, and 21st centuries. Through an analysis of the Proceedings of the American Medical Association, this work demonstrates how physicians describe and view the connections between disability and family in bureaucratic activities. The exploration of the Proceedings documents elucidates the changing process around how physicians define the relationship of disability and family in the US through bureaucratic and policy discussions. A qualitative approach of content analysis is employed to evaluate the American Medical Association Proceedings of the House of Delegates from 1846 to 2022. Data collection applies deductive coding focusing on various terms related to the conceptualization of families with analysis exploring themes around disability within the searched terms. Results demonstrate how US physicians describe the relationship between disability and family over time in the US context. The findings highlight cases in which the medical establishment recognizes itself as a potential source of burden, families choosing burdens of supporting or not supporting family members with disabilities, and the medicalization of social phenomena related to disability. Additional findings include discussions of support systems that families with disabled family members can leverage for assistance. This first-of-its-kind longitudinal content analysis study provides insights on the meaning-making processes of physicians in relation to how conceptualizations of disability and family are described in medical proceeding documents. The value of this work lies in both the findings of how physicians describe the intersection of disability and family as well as the viability of medical proceeding documents for analyzing cultural-social phenomena. Additional value is added with the notion that physicians view disability in a familial context as being caught between problems and support.

The purpose of this study is to investigate Koreans' preferences for FCDM versus SDM and explored the influence of Asian cultural values on decision-making in the context of managing chronic illnesses, such as type 2 diabetes mellitus (T2DM). Shared decision-making (SDM) emphasizes collaboration between providers and service recipients to decide on the best treatment options. However, it may not fully account for the role of families in managing chronic illness, particularly for people from Eastern cultural backgrounds who value active participation from their families in decisions. In response, family-centered decision-making (FCDM) has been proposed as an alternative approach. Using a vignette experiment design, data (n = 316) were collected from Koreans in the US and in Korea who were randomly presented with either SDM or FCDM processes for reaching T2DM treatment decisions. In addition to demographic information, participants reported on three dimensions of their decision-making experience: satisfaction, perceived effectiveness, and perspective-taking. They also rated their Asian cultural values and familiarity with T2DM. Results show better satisfaction, perceived effectiveness, and perspective taking for FCDM compared to SDM when examined in context of treatment types and perceived illness severity. Moderation effects were found for familiarity of illness, with familiarity effects varying by perceived severity. Study findings provided some evidence in favor of FCDM in Asian communities addressing the disabilities and chronic illness of a family member. Although the current study investigated treatment decisions for T2DM during doctor's visits, FCDM has shown potential to be applied in other service settings.

The role of caregivers and issues of parenting are controversial in research on disability. While appreciating the historical and political reasons to critique power relations in care systems and care relations, we argue that it is important to consider parents' and other caregivers' positions. A reconsideration provides insights into pervasive effects of ableism defining not only the individual child but parents and other relatives as well. We draw from extensive research on couples parenting a child with disability in Germany (Tröndle, 2022a). This study seeks to understand how parents of a child with disability cannot avoid understanding themselves as “special parents.” Through analyzing shared life stories of couples and individual biographies, the study reconstructs how identities evolve differently depending on their work-sharing arrangements. Based on our findings, the couples experience difficulties in maintaining dual employment arrangements. They become “unable” to step outside of the logic of welfare and health provision and structures of the labor market. Couples begin to explain their situation and the discrimination they experience by reflecting themselves as “special parents.” Heteronormative and ableist expectations hinder them in articulating resistance and gaining agency as allies of their children, facilitating positions of complicity. We argue that the approach suggested by this study – namely including the ambiguous situation of caregivers in Disability Studies – can encourage other researchers to consider othering and ableism of and by caregivers.

The notion of sexual health has become a buzzword across various spheres, including the scientific, political, and social arenas. In a similar manner, discussions about the subject of disability and sexuality are commonly articulated through the lens of sexual health and “healthy sexualities.” Greater focus has been placed on issues of protection, abuse, sexually transmitted diseases, and unplanned pregnancy. Opportunities to talk about sex, desire, and pleasure is missing in this discourse. Drawing on my experience conducting studies about disability and sexuality, I interrogate the (over)reliance and unproblematized use in terms of the language of sexual health and healthy sexuality when it comes to people labeled/with intellectual disabilities.