Caregiving Through a Disability Justice Lens
By MaryGrace Trifilio | March 8, 2023
Unpaid caregiving for dependent adults is a routine feature of life for many Americans. Approximately “one in five Americans provide unpaid care to an adult with health or functional needs,” devoting, on average, 20 hours of unpaid work per week to caregiving. Caring for dependent elders and persons with disabilities can be a source of joy and deep connection with loved ones. It is also labor that comes at a cost.
The majority of unpaid caregivers are women, who are expected to provide care across the life course, from child care to elder care. Caregiving expectations have significant economic impacts that intensify gendered income inequality. According to the Pew Research Center, uneven division of caregiving responsibilities contributes to the gender pay gap. Approximately 60% of unpaid caregivers are also employed outside the home. These caregivers often work fewer paid hours, take more time off, and retire earlier than non-caregivers – resulting in lower incomes and smaller retirement savings. The pandemic further exacerbated the toll of unpaid caregiving for women.
Caregivers experience high levels of stress, depression, and sleep loss, and are at an increased risk of chronic conditions, including cardiovascular disease.
Ableism in Caregiving
While caregiving itself can be disabling, ableism is often the biggest challenge disabled adults and their caregivers face. According to the disability justice advocate Stacey Park Milbern, ableism undermines family caregiving. When Milbern was a child, her doctors coerced her mother into “correcting” the appearance of Milbern’s disabled body though surgeries that were not medically necessary and did not improve her quality of life. Indeed, these surgeries often impeded her ability to “be a kid.”
Ableism is embedded in the obtuse bureaucracy caregivers and disabled adults must navigate.
The Americans with Disabilities Act (1990) was a landmark piece of legislation that prohibited discrimination against people with disabilities in employment, public accommodations, and state and local government services. Nonetheless, ableist policies and norms persist in the social and government services that many people with disabilities utilize. Disability justice advocates have argued that social services often do not appropriately serve the very people they ostensibly mean to accommodate. Leah Lakshmi Piepszna-Samarasinha provides (and performs) a great example of this failure: disabled adults and their carergivers contend with inaccessible transit, broken ramps at medical and social services offices, and small font on confusing and circuitous paperwork in harshly lighted rooms.
Recent attempts to support caregiving, and thus, disabled adults, continue to fall short. For example, the Consumer-Directed Personal Assistance Program allows eligible disabled adults to use Medicaid funds to reimburse relatives or friends who serve as caregivers. However, under C-DPAP, caregivers are paid the state minimum wage – not a living wage. Additionally, the adult needing care must first qualify for Medicaid – which has an unrealistic income cap that does not actually reflect costs of living. C-DPAP programs are out of reach to those who have some savings or financial assets, which disqualify them from Medicaid.
Rethinking Our Care Systems Through Disability Justice
Care work is not always done by the core or nuclear family, and policy often fails to recognize the diversity of kinship.
Social scientists have long challenged constrained definitions of kinship that do not recognize chosen family. Recent reports point out that black women and LGBT elders are aging alone. Family caregiving is not always nourishing, and choice matters.
Writer-activists such as Piepszna-Samarasinha have pointed out that disabled adults often rely on other disabled adults. People with disabilities draw on each other’s experience to learn how to overcome challenges when navigating negligent social welfare systems and healthcare. This standard of mutual care goes beyond advising and emotional labor.
Already existing mutual aid organizations by and for disabled adults and communities must be better resourced, whether through greater support for direct grants or other policy-guaranteed ways of putting money in the hands of the people and organizations already doing the work. These systems often collapse because they are underfunded.
Policymakers must address the economic precarity that too often accompanies disability and caregiving. In our current economic crisis, with rising food, housing, travel, and healthcare costs, where most working-age people take on at least one job to survive, it is crucial to appropriately reimburse or economically reward caregivers and support disabled adults. Social security and pension checks cannot keep up with the rising cost-of-living and inflation.
Eldercare and disability justice advocates also must push for direct or guaranteed basic income and a significant expansion of supplemental security income. Disabled adults and their caregivers can decide for themselves how to best spend the money. A number of pilot programs in the United States and internationally have demonstrated the success and cost effectiveness of such investments.
Any policy that attempts to address issues of aging and disability must recognize the plurality and fluidity of life. Disability justice affirms that there is no single normative body/mind, that we all may be or become disabled, and that we will experience such debility or disability in infinitely varying ways.
Many disability justice advocates are wary of the back-and-forth of policy reform and the increased visibility, and thus vulnerability, that comes with engaging the state. For disability justice advocates, “reform” often takes the shape of imagining another world–the tender, nurturing, validating, and liberating world that is often foreclosed by current policy regimes. Disability justice encourages us to dream and tap into the creativity of non-normativity. What might be possible for disabled people, caregivers, and therefore all of us?
MaryGrace Trifilio is a PhD Candidate in the Department of Anthropology at the University of Minnesota. She was a 2022 Gender Policy Report-Race, Indigeneity, Disability, Gender and Sexuality Studies Graduate Research Fellow through the Graduate Research Partnership Program of the College of Liberal Arts.
Photo credit: Istock.com/AntonNovikov