Care
Care is so frequently paired with health that health care is often used as a fixed compound word. Yet, paradoxically, health and care have become increasingly detached from each other, comprising different activities, professions, and ethical principles.
Care is work, an attitude toward others, and an ethical ideal. In most societies, the majority of care work is done by women, who are seen as more naturally predisposed to caring virtues like nurturance, generosity, and empathy and also obligated by their social statuses as daughters, wives, and mothers (Kittay 1999; Glenn 2010; Noddings 1984; Ruddick 2002; Tronto 2015). The idea that care is “given” complicates its association with work, paid or unpaid, and care is largely absent from Marxist theories of labor. However, feminists observe that economically productive activity recognized as “work” is subsidized by the uncompensated labor of numerous others, mostly women and people of color (Bonnar 2006; Fineman 2004; Kittay 1999). Recognizing care as work draws attention to unpaid labor within the family but also paid caregivers like nannies, home health aides, and elder companions, who are among the most poorly compensated and unappreciated of all workers. Many work in private homes, where they are isolated from one another, and may develop emotional bonds with dependents. Moreover, care work requires patience, restraint, and generosity that cannot be documented on a time sheet. These qualities have made it difficult for care workers to self-advocate or to organize, as have workers in other professions (Boris and Klein 2012; Glenn 2010).
While care has a longer association with sorrow, concern, and burden, its meaning as “charge, oversight, attention, or heed with a view to safety and protection” first arose in the 1400s (Wald 2008). In monarchial societies where most people were subjects rather than citizens, dependence was the norm. Powerful men understood themselves to be interdependent with their subordinates. Care work was distributed according to gender, with women tending to children and household chores and men engaging in more physically taxing activities like farming and building. By the eighteenth century, independency referred to owning property, a status that freed men from the need to work and granted them political rights. To be dependent meant to engage in wage labor rather than belonging to the owning classes. The radical innovation of the American Revolution was to declare all white men independent, regardless of whether they owned property (Fraser and Gordon 1994). At the same time, radical Protestantism advocated an independent and individualized relation to God. Dependence was redefined from a social relation to a status identity assigned to women and nonwhite people, including slaves and Native Americans (Glenn 2010).
The era of industrialization reinforced the separation and gendering of public and private, work and domestic life, care and labor. The validation of wage labor made dependency an increasingly pejorative term linking economic need to moral qualities of weakness, inability, and poor character (Fraser and Gordon 1994). Caregiving activities were increasingly separated from understandings of meaningful work. It was also during the era of industrialization that many European countries developed nationwide social welfare programs to care for the poor, sick, and disabled. In the US, new workers’ compensation laws obligated employers to pay for medical care and lost wages of sick or injured employees, and in 1935, the Social Security Act provided a basic safety net to the unemployed and elderly. Its definition of protected workers excluded domestic and agricultural laborers, occupations dominated by African Americans and other people of color, laying the foundations for racial bias that shapes welfare policy to the present day (Boris and Klein 2012; Fraser and Gordon 1994; Glenn 2010).
The history of care is also shaped by the professionalization of medicine and rise of institutions. Until the late nineteenth century, most health care occurred at home, where women tended to sick and disabled family members, sometimes advised by spiritual healers or doctors. The professionalization of medicine shifted authority for treatment of the sick and disabled to credentialed doctors, whose knowledge had priority over that of family and more traditional healers. Although hospitals had existed since the Middle Ages, their primary mission was containment of infectious disease and care of the poor. Only in the nineteenth century did medical institutions shift toward treatment and rehabilitation of the ill. Rising numbers of hospital patients and the professionalization of health care increased demand for nurses, an occupation dominated almost exclusively by women. As hospitals took on treatment of the sick and disabled, home was reserved for the care of children, elderly relatives, and dependents with illnesses and disabilities that did not require more technical medical support.
Technological developments played an equally important role in the history of care. Hospitals were ideal places for bulky, complicated medical equipment, but extended hospital stays were expensive (Risse 1999; Starr 1982). During the Great Depression, the US government sought to save money and create jobs by hiring more nurses to visit elderly and chronically ill patients at home (Boris and Klein 2012; Glenn 2010). As the century wore on, complex medical devices became more portable and user friendly. New equipment allowed hospital management to economize by discharging patients who were sicker and more medically involved to their homes or outpatient facilities for care (Arras 1995). Once a small movement, home hospice became an industry that promised to cut costs for hospitals while providing support and equipment to comfort the dying and their families (Braswell 2019). Many patients and families who welcomed the thought of dying at home found the resources inadequate to meet their needs. The current system relies heavily on the unpaid labor of family, who rarely anticipate the time, effort, and emotional toll of caring for a dying person (Braswell 2019).
Care for dependent people with disabilities followed a similar historical cycle from home to institutions. Traditionally, disabled people who survived childhood were cared for by their families and communities. In the nineteenth century, the same institutional culture that gave rise to hospitals also developed massive facilities for housing people with disabilities. Early institutions aspired to educate and uplift their clients in preparation for their return to their homes and communities. But as optimism about the possibilities of reforming the “feebleminded” waned, more clients became permanent residents, abandoned by their families to the care of the state (Trent 2017). New understandings of heredity made it a shameful secret to have a disabled relative, and the function of residential facilities shifted from education and reform to warehousing (D. Cohen 2013). Hidden from public view, conditions of institutional life deteriorated for staff and clients, who endured rampant crowding, abuse, and neglect (Carlson 2010; Carey 2009; Trent 2017). Not until the 1970s did journalists expose a vulnerable population living in a kind of squalor rarely seen in modernized countries. Widespread public outrage fueled the movement for deinstitutionalization, which called for closing facilities of mass confinement and shifting residents into smaller facilities and community settings (Carey 2009).
Deinstitutionalization is an important chapter in the history of care, one that has made people with disability-related dependencies more visible, autonomous, and integrated than at any time in the past century. A new generation of people with disabilities has been empowered by the new climate of inclusion. Refusing the role of passive bystanders, they claim to be consumers and citizens entitled to determine the circumstances of their own care (Charlton 2000; Joseph Shapiro 1993). Deinstitutionalization changed the nature of care for people with disability-related dependencies in the US and Europe; however, the movement was incomplete. Shuttering large institutions was a momentous step, but the money it saved has not been channeled into adequate resources to relocate formerly institutionalized people, provide them with care, and uphold the rights of home care workers (Carey 2009; Ben-Moshe and Carey 2014).
The chronic underfunding of community-based care has been amplified by a disability rights movement reluctant to acknowledge dependency (Kittay 1999; C. Kelly 2016). Calling for independence, advocates denounced the image of disabled people as vulnerable and needy (Charlton 2000). Many early activists in the US were college students who received care from friends or classmates in a spirit of communal generosity. These idealistic relationships emphasized the quality of life and dignity of the disabled consumer rather than the pay or working conditions of the care provider (Boris and Klein 2012). As such, they obscured the needs of the most dependent disabled people, as well as the rights of care workers. The struggle to reconcile the autonomy of disabled people to dictate the circumstances of their care and the well-being of paid providers—usually women and people of color—continues into the present (Boris and Klein 2012).
This entry focuses on the Global North, where changing demographics and social conditions have created rising demand for paid caregivers; however, the impact of those changes is planetary. Because of its low status and pay, care work has increasingly fallen to immigrant women from regions of the world plagued by exploding foreign debt, shrinking state welfare, and the decline in traditional occupations such as subsistence agriculture. Workers from the Philippines or Tibet are prized by a global elite because their cultures are reputed to value superior caregiving, and the economies of these nations and others like China, Mexico, and India rely heavily on remittances from women workers abroad, creating a “global care chain.” Migrating workers leave behind their own dependents, creating a deficit of care in their home countries (Boris and Parreñas 2010; Ehrenreich and Hochschild 2003; Kittay 2005; Parreñas 2001).
Care is often high on the list of unsustainable practices looming on the horizon for the next generation to resolve. Journalists sometimes describe a mounting “crisis of care” that risks casting dependent groups like the elderly and disabled into the familiar position of being a costly burden. A more productive approach to the changing demographics of care would require a dramatic reconsideration of how we define and value work, personhood, and a good life for both caregivers and receivers. To do so will require not just changes in education, policy, and social organization but also cultural shifts in how dependency is understood and how providers are valued. Health humanities is a field well positioned to orchestrate difficult conversations about how to make “health care” more than a hollow signifier, imagine better ways to sustain our fragile systems, and recognize the exchange of care as a source of value, meaning, and creative possibility.