Aging-in-Place Through a Critical Disability Studies Lens

Marygrace Trifilio is a PhD student in the University of Minnesota Anthropology Department, having received an undergraduate degree in cultural anthropology from Fordham University and a Master’s degree from City University of New York (CUNY). She is also the recipient of the 2023 RIDGS Graduate Research Partnering Program (GRPP) Fellowship and the Wenner-Grenn Dissertation Fieldwork grant.

Personal and Professional Background

MaryGrace’s New York roots helped shape her commitment to studying urban life, a commitment she has found to be increasingly urgent, difficult, and emotionally taxing as cities’ economic disparities quickly widened and crystallized during the past few years. She worked as a researcher for seven years for the Visiting Nurse Service of New York, now called VNS Health, which is the largest nonprofit homecare organization in the country. She was attracted to this work because of her family’s experience working in care facilities and because of her own experiences helping her grandparents age in a multigenerational home. Developing relationships with her grandparents made her intimately aware of both the joys and discomforts of aging, neither of which are fully acknowledged in common discourses. These personal and professional experiences made her realize that the ways in which public health and nursing research approach issues of aging and the very structure of elder healthcare are partially restricted by the epistemological bounds of their disciplines. This realization is what informs and motivates MaryGrace to seek out new and interdisciplinary approaches to aging and care centered around Critical Disability, carceral, and urban studies.

Aging-in-Place and Medical Carcerality

MaryGrace’s dissertation research is about older adults who live in Brooklyn, NY, and are attempting to age-in-place - to stay home during the final phases of their life rather than checking into an institution. She uses ethnographic methodologies, including data from nursing and home care research, to gain an in-depth and nuanced understanding of what the lived experience is like for those aging in place and what that experience illustrates about what Critical Disability scholars term “the medical carceral complex.” The latter idea encompasses a framework for analyzing the history of medical institutions alongside the history of institutions and policies of incarceration, often yielding insights into how the two have simultaneously evolved and informed each other. MaryGrace seeks to answer the question of how, if at all, do nursing homes and aging-in-place arrangements fit into this framework? This is a question partially inspired by MaryGrace’s interactions with those at the receiving end of these institutions, who sometimes feel that the nature of the care they receive confines their freedom and punishes them for aging. These experiences also inform a high-level investigation into how the U.S. healthcare system and society at large value older adults who are no longer “productive” members of the economy. The relative abandonment of older adults in public policy stands in contrast to the provisions made for babies and childcare, which are also often insufficient but nevertheless raise difficult questions about who our society feels the need to care for, and why.

MaryGrace’s field research in 2023 was advised by Dr. Susanna Blumenthal (Professor, History and Law) through the RIDGS GRPP Fellowship. She developed a short interview guide and completed remote interviews with people aging-in-place in Brooklyn, NY. She asked for their thoughts on her hypothesis that aging in place is carceral, and if their lived experience resonated with what the legal history of contracts of care and inheritance suggests. MaryGrace’s research project also has several elements of participatory action research since it was designed in collaboration with one of the primary participants, who helps ensure that the project remains true to the experiences of those being studied. 

Building relationships with her research participants helps her bring an ethic of care, rather than extraction, to the research process, and also helps keep her accountable to those entrusting her with their experience, making sure that she doesn’t misrepresent them or theorize them into abstraction.

Critical Disability Studies Lens

MaryGrace sees her work as borrowing from Critical Disability Studies methodology. Among these influences is Jasbir K. Puar’s The Right to Maim, which presents the notion of living in a “debility’s position,” based on the vulnerability of the inhabitants of Palestine to be maimed and become disabled without warning or recourse. Puar’s concept “comprehends those bodies that are sustained in a perpetual state of debilitation precisely through foreclosing the social, cultural, and political translation to disability” (Puar 2017, xiv). MaryGrace sees this idea as useful for partially understanding the razor’s edge precarity of those aging without resources in late-stage capitalist societies. She also draws on an understanding of disability as common and normal, but also invisibilized and treated as the domain of other people who have failed in some way to live up to a standard of normal life. She is also inspired by the clarity of focus of so many Critical Disability scholars who prioritize generating tangible policy and practice goals to bring about disability justice in the here and now.

MaryGrace also uses a Critical Disability Studies lens to more fully understand many aging New Yorkers’ feeling that they are imprisoned in their own homes. While many are constrained by the inevitable wear on their own bodies, this effect is compounded by the urban environment. Factors ranging from steep stoops and stairs, narrow doorways, changes in public transportation, out-of-service elevators, and lack of public restrooms all contribute to elders' experience that even ordinary daily tasks have become out of reach to them and to the conclusion that the built environment itself can be incarcerating. Furthermore, the gauntlet of papers and forms which elders are required to fill out in order to apply for various types of aid and accommodations, especially to those with low English literacy, feels like further punishment for aging.

Kinship and Intersectional Approaches

Also important to MaryGrace’s work and personal life is an expansive redefinition of kinship, a concept with myriad resonances across critical Black, queer, and crip theory and practice. She sees this redefined kinship embodied in the care networks formed by those aging in place to help each other amidst shrinking community resources upon which they would usually have relied. These networks of those with shared precarity offer have often been successful and resilient, imbuing the research with hope and models for further potential success. However, it is important to consider that while these networks often arise in response to the withdrawal of social safety nets in neoliberalizing societies, they provide a mitigation of these effects, not a replacement for robust social services. 

MaryGrace’s research also explores the ways in which additional identity components such as race, gender and sexuality mediate the experience of aging in place. For instance, it shares the experience of many Black New Yorkers, who are more likely to become chronically ill at a younger age due to factors such as environmental racism, the stress of living in unsafe environments, and lack of access to nutritious food. Additionally, the criminalization and incarceration of Black and Brown men frequently upends biological kinship networks and places greater importance on chosen communities in order to get through difficult circumstances. 
MaryGrace also speaks to many queer New Yorkers aging into later life who belong to the generation which survived and had its kinship networks devastated by the HIV epidemic in the 80s and 90s.

Historical and Future Implications

Placing MaryGrace’s work into a broader historical context further highlights the opportunities of the current moment. The shift of older adults aging in place takes place amidst the Great Society programs of the 1960s like Medicare fueling the creation of elder care institutions, their growth compounded by the movement of women into the workplace. During this time, family units took on decreasing importance in looking after aging relatives. In recent years, the cost of institutionalized elder care has risen beyond the means of many, which has led to a rising countercurrent of deinstitutionalization. All models of elder care face the unprecedented demographic shift of older adults outnumbering children in the United States by 2030. This bodes an even greater resource squeeze than what the healthcare system is currently experiencing and makes the need for research like MaryGrace’s all the more important. Building a world which no longer punishes or discards the aging requires this kind of deeply human-centered research which stays grounded in people’s immediate needs while still having space to imagine futures beyond the constraints of what is possible under present-day systems.