Family

The word “family” is highly charged in disability studies. On the one hand, families are seen as the site of nurturance, narrative, and theory building for those with disabilities (Bérubé 1996; Davis 2000a; Grinker 2007; Kittay 1999). On the other, families are recognized as potential sites of repression, rejection, and infantilization. Whether seen positively or negatively, the term “family” is often taken for granted as a preordained, self-sufficient unit in discussions of family life influenced by disability. In the American context, the ideal of family generally involves parent-child relations in a classic heterosexual, nuclear, able-bodied household despite the coexistence of many other forms of family organization that incorporate members with disabilities: single parents, same-sex unions, extended family formations, and “families we choose.”

Some of the earliest and much ongoing work on disability and family life builds on this assumed heteronormative Euro-American nuclear form. This writing predominantly comes out of clinical and applied research in the “helping professions” addressing the inclusion of family members with disabilities. It also is evident in memoirs ranging from parental reflections on raising a child with a difference, to first-person chronicles of living with a disability, to activist accounts. More recently, disability studies scholars from different disciplines such as anthropology, philosophy, history, and literary studies have taken more analytic, critical, cross-cultural approaches to understanding how the social categories of “disability” and “family” inform each other.

We have proposed the term “kinship imaginary” as a way to underscore this new analytic perspective, emphasizing that families are both flesh-and-blood collaborations and always acts of cultural imagination (Rapp and Ginsburg 2011). This conception draws on the basic anthropological/historical recognition that families are social constructions that vary across class, culture, time, and geography. To rephrase an insight from Marx, people make their own families but they do not make them as they please . . . but under circumstances existing already, given and transmitted from the past. In the process of incorporating disability, family members often find themselves transforming seemingly stable notions of kinship that they themselves may have taken for granted, occasionally becoming “accidental activists” as a result (Silverman 2011).

Through much of the twentieth century, “family life” was an arena in which state policies and public culture defined and pathologized disability. As early as the 1860s, “ugly laws” prohibited citizens with disability from appearing in public space (Schweik 2009). By the early twentieth century, institutionalization of the disabled and eugenic measures both continued to purge disability from public space and “protected” the nuclear family. In the United States, discrimination against disability included the encouragement of passive infanticide and other eugenic ideologies that migrated to Nazi Germany, where murderous prejudice against disability escalated to genocide (Pernick 1996; Longmore and Umansky 2001). In much of the developed West, more mundane forms of bias against disability persisted well after World War II, as families were regularly encouraged to institutionalize their disabled children “for their own good” (Stern 2005).

Toward the end of the twentieth century, a change in the zeitgeist and the law began to favor inclusion of people with disabilities in families, schools, and communities, although discrimination continues to be an enormous problem. This shift in the kinship imaginary emerged from multiple processes: family activism, deinstitutionalization, progressive legal and educational reform, and most recently the growth of an international disability rights movement. As the relationship of people with disabilities to their natal families was redefined, kinship imaginaries have required continual reinvention, from the rearrangement of caretaking responsibilities in the household to the production of family narratives embracing rather than excluding the fact of disability (Groce 1985). This sort of “public storytelling” has worked its way into media of all sorts and in many parts of the world, ranging from personal memoirs and television shows to scholarly works that offer compelling perspectives on the “new normal” established by living life with a difference in many parts of the world (e.g., Grinker 2007).

A powerful redefinition of family through the prism of disability has come from feminist philosophers. Eva Kittay attends to “love’s labor,” the often unrecognized, mostly unremunerated, and deeply gendered work of caring for family members whose disabilities render them profoundly dependent, work inspired by her experiences providing care for a daughter, Sesha, born with severe cognitive impairment. Kittay (1999) develops a sophisticated analysis of the gendered assumptions built into our kinship imaginary via a “dependency critique” of equality as an ideology that hides the overwhelmingly female labor involved in caretaking of people with disabilities across the life span. She champions the recognition of caretaking labor that human dependency requires and the interdependence that characterizes all family life. Martha Nussbaum (2006) also critiques theories of social justice built on ideologies of equal rational autonomous subjects. Instead, she proposes a legal philosophy that accounts for unequal capacity, asking how we can best extend the equal rights of citizenship to those with mental and physical disabilities.

The philosopher Peter Singer (1993, 1995), by contrast, promotes an extreme utilitarian and neo-eugenic position, advocating that families have the choice to euthanize severely disabled newborns based on the hypothetical burden they might place on parents’ preferences for happiness. This position has been challenged by disability activists, notably in a widely circulated article by the late Harriet McBryde Johnson, a disability rights lawyer who sketches a primal family drama imagined from Singer’s philosophical perspective:

He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. (2003, 50)

Add to Johnson’s voice anthropologist Gail Landsman’s (2009) empirically grounded critique of Singer in her study of American mothers who were recently given a disability diagnosis for their infants. In analyzing changes in maternal narratives over several years, Landsman shows how these mothers struggled to transform the medical model into an alternative narrative of family life that readily encompasses disability.

New medical technologies have resurrected old questions about the status and stratification of disability in families. Since the 1970s, a burgeoning popular and scholarly literature has responded to the escalating number of genetic tests that are increasingly being used for “quality control” of anomalies present in both parents and fetuses. Feminist disability scholars have raised ethical issues about the cultural values that encourage termination of pregnancies—or not implanting embryos—with genetically diagnosed disabilities (Asch 2007). While the range of conditions available for testing is increasing geometrically, the fund of social knowledge accompanying such decision making—what it might be like to live with a particular disability—is woefully inadequate for a generation of women who face the dilemma of being “moral pioneers” (Rapp 2000).

While there are eugenic echoes in these practices, the “choice” regarding who is admitted to the human community has shifted from the state to the family, assisted by emergent expert professions such as genetic counseling. At the same time, however, the spread of disability consciousness has given greater support to couples with disabilities that choose to create families of their own. Additionally, medical technologies in the developed world have also increasingly provided lifesaving possibilities for compromised infants, those with spinal cord injuries, wounded soldiers, the frail elderly, and other disabled family members who might not otherwise have lived. Their survival brings new challenges to family reframed by the fact of disability.

In parts of the world where such medical technologies are rarely available, kinship imaginaries—as well as the very category of disability itself—have quite different configurations in diverse cultural and economic settings. While models of personhood focused on the individual have guided the scholarship on disability in the United States and other wealthy countries, kinship- and community-based supports in resource-poor and non-Western settings (where an estimated 80 percent of people with disabilities live) often grow out of radically interdependent understandings of personhood in which families—however they are defined—play a profoundly important role (Ingstad and Whyte 2007). In places such as China or India, the presence or absence of disability in familial life is constructed by broader notions of kinship and radically different epistemologies from those used in the West (Kohrman 2005). A condition such as epilepsy may be seen as a divine gift, or else as a rare genetic condition understood as an ancestral curse. Family members with disabilities may be hidden and silenced, integrated as laborers, or encouraged to migrate from villages to cities in search of education, work, or services (Phillips 2011). By turning its attention to such contrastive kinship imaginaries, disability studies can aspire to a more global presence, offering a salutary recognition that people with disabilities everywhere shape and are shaped by family life in all its diversity.

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