In Care Home Stories: Aging, Disability, and Long-Term Residential Care, Sally Chivers and Ulla Kriebernegg present an edited collection that seeks to tell "new and better stories about institutional care" (p. 17). Together, the sixteen chapters and five poems uncover what it means to live and die in a paradoxical, liminal space that is simultaneously a "home" and a "hospital."

Institutionalization is a key tension for disability studies scholars interested in exploring aging and old age, particularly what Twigg (2004) has referred to as "deep old age," or a time of increasing debility, disablement, and dependency. As Kelly (2011) notes, "In the context of disability, care is haunted by the specters of institutionalization, medicalization and paternalistic charities which, in varying degrees past and present, systematically marginalize people with disabilities" (p. 564). While both disability studies and aging studies prioritize community care for old and disabled people, disability studies approaches institutionalization from an abolitionist perspective (Ben-Moshe, 2020; Chapman et al., 2014), whereas aging studies considers ways to improve institutions should elders need to enter them (Beerens et al., 2013). These factors make institutionalization a fraught area for disciplinary connection and collaboration between disability studies and aging studies. This distinction creates ruptures between the disciplines that Care Home Stories invites disability studies scholars to further explore.

Care Home Stories focuses on three central aspects of old age, which, I would argue, are also central to disability. First, it centers care—specifically the experiences of those giving and receiving care and the social, political, economic, and cultural aspects of care. Some scholars of old age have declined to focus on care, instead focusing on old age as a time of vitality, activity, and independence in an effort to separate cultural conflations of old age, disability, and dependency (Gibbons, 2016). Concurrently, a number of disability studies scholars and activists (particularly those in disability rights and independent living movements) have sought to separate care from personal assistance, and position care solely as "a layered form of oppression" for disabled people (with little attention to the oppression of marginalized care workers) (Kelly, 2013). Although important work in feminist disability studies has considered care (e.g., Erevelles, 2011; Kelly, 2013; Price, 2015), care and care work remains underexplored in disability studies. Yet, as noted by Chivers and Kriebernegg, social and cultural meanings of old age and disability cannot be separated from care. Consequently, Care Home Stories seeks to complicate care by offering varied and complex stories that will be of interest to aging and disability studies scholars seeking to deepen their understanding of care, particularly in residential, institutional settings.

Second, Care Home Stories urges readers to contend with the idea of home. Chivers and Kriebernegg observe "Home is a thorny concept that benefits from interdisciplinary…scrutiny" (p. 20). Home first and foremost reflects the desires of old and disabled people to "age in place" and live in the community. Yet what happens when the state and societal structures create conditions in which old and disabled people must enter residential care facilities? All long-term care facilities claim that they seek to be homelike - but what does homelike mean? How can a single place be "like" home for so many diverse people? How does the idea of home warp and change for those in institutions? Care Home Stories seeks to explore these questions.

Third, Care Home Stories is devoted to stories and storytelling. The interdisciplinary collection contains first-person narratives, reflections, creative nonfiction, and advocacy essays, all of which center on stories of old age, disability, and long-term residential care. The stories of old and disabled people—particularly those who are institutionalized—have long been disregarded and overlooked. Old people in particular are thought to exclusively represent stories of the past and their lives prior to institutionalization. Chivers and Kriebernegg seek to challenge this stereotype, explaining, "We turn to stories to put the key terms of 'care' and 'home' together because they offer a meaningful and aesthetic way to contain and revel in multiplicities" (p. 20). Care Home Stories seeks to tell new stories about care homes, experiences of care, and care work—thereby changing the meanings of old age, disability, and care.

Care Home Stories implores readers to consider the importance of context and contains perspectives from Canada, the United States, the United Kingdom, Germany, the Netherlands, and Croatia. Unfortunately, perspectives from the Global South are largely absent. The collection is divided into four parts: (1) Personal Perspectives, (2) Working and Playing in the Care Home, (3) Literary and Cultural Perspectives, and (4) Social and Historical Perspectives. Each part opens with poetry by Betsy Struthers focusing on the experiences of her mother with dementia and Betsy's experiences visiting her in a nursing home.

Part 1: Personal Perspectives offers four first-person narratives of care homes. Lanoix struggles with what she terms "two-home syndrome," or her experience living between two homes - her home in the community and the nursing home her husband is placed in following a traumatic brain injury. This chapter uniquely engages with the meaning of nursing homes for young and middle-aged disabled people and their families, particularly since nursing homes are typically understood as "old folks' homes." Barusch traces the development of long-term care in the United States through the story of navigating the difficult decision to place her father in a for-profit nursing home after he was diagnosed with dementia and his wife could no longer care for him in the community. Wyatt-Brown discusses her struggles to remain "visible" and retain her autonomy while living in a continuing care retirement community. Although all of these stories center on old and disabled individuals requiring long-term residential care, this section would have benefited from more chapters written by people who have lived in care homes.

Part 2: Working and Playing in the Care Home contains stories of doing care work, building relationships, and challenging stereotypes through creative expression, joy, and growth. Dunbar's creative nonfiction piece shares her experiences working as a nurse in a nursing home in Ontario, Canada. Importantly, she includes the perspectives of direct care workers, who are often gendered, racialized, and transnational subjects and are woefully underrepresented in research. This chapter reflects a strength of the collection, as it discusses care work and those who perform care work in ways that disability studies has largely failed to do (Erevelles, 2011; Kelly, 2013). Gray et al. discuss how theatre serves as a vessel for telling different stories about dementia and dementia care and challenging discourses of loss, decline, and tragedy. Likewise, Moorhouse shares how she developed a theatre and storytelling group for residents in a nursing home in Toronto, Canada and how such approaches transform long-term care into sites of laughter, happiness, and connection. With its focus on "play," this section illuminates how institutionalized old disabled people continue to engage in expression, creativity, and joy.

Part 3: Literary and Cultural Perspectives examines portrayals of old age, disability, and care homes in film and literature. Ciafone draws on critical and post-colonial theory to examine old age and ability in The Best Exotic Marigold Hotel, a film based on the phenomenon of retirees from the Global North living in "exotic" care homes in the Global South. Life considers how what she terms the nursing home narrative genre has disregarded racialized and gendered subjects, and how this reflects the violence of placing people marginalized by race, indigeneity, nation, and class in white, middle class care homes. These chapters were compelling for their examination of gender, race, and class in the context of institutionalization. This section may be of particular interest to those in disability studies interested in representation and media.

Lastly, Part 4: Social and Historical Perspectives draws on sociological, cultural, and policy approaches to care homes to contextualize these complex spaces. Gilleard and Higgs consider how nursing homes are both symbols and structures that reflect society's fears of deep old age, decline, dependency, and death. They argue that to achieve change within care homes, resources are needed to combat the devaluing of the marginalized people living and working in institutional sites of care. Atzl and Depner explore the role of place and space in care, specifically where care occurs and how these sites are constructed. They encourage us to consider what it means that resident rooms are places where old disabled people live and care workers work, and how this creates contradictions and tensions that limit old disabled people's abilities to recreate a sense of "home." This section strengthens the collection's focus on varied circumstances of institutionalization and emphasizes the importance of understanding context in diverse sites of care and confinement.

Care Home Stories is an interdisciplinary collection but primarily draws from aging studies' theories and perspectives. The collection is centered on stories, it is not laden with theory, and is accessible to a variety of readers. While it is grounded in aging studies, it is an important text for disability studies scholars to consider, particularly those interested in care and institutionalization. Although there are a few notable exceptions, aging studies and disability studies have largely remained on parallel paths (Yoshizaki-Gibbons, 2018). Care Home Stories presents a way for disability studies scholars to examine varied disciplinary approaches to care, care work, and institutionalization. Although disability studies scholars and disability activists will undoubtedly maintain an abolitionist approach to institutions, it is important that we do not allow those currently living and working in institutions to remain invisible. While many in disability studies may not agree with Chivers and Kriebernegg's goal to make care homes "desirable rather than necessary" (p. 19), the text offers new and important perspectives on care, care work, old age, and disability. Care Home Stories captures the complexity of long-term residential care as a place of isolation, despair, violence, and confinement as well as a place of connection, community, deep relationships, joy, and resistance.

References

  • Beerens, H. C., Zwakhalen, S. M. G., Verbeek, H., Ruwaard, D., & Hamers, J. P. H. (2013). "Factors associated with quality of life of people with dementia in long-term care facilities: A systematic review." International Journal of Nursing Studies, 50(9), 1259–1270. https://doi.org/10.1016/j.ijnurstu.2013.02.005
  • Ben-Moshe, L. (2020). Decarcerating disability: Deinstitutionalization and prison abolition. University of Minnesota Press. https://doi.org/10.5749/j.ctv10vm2vw
  • Chapman, C., Carey, A. C., & Ben-Moshe, L. (2014). Reconsidering confinement: Interlocking locations and logics of incarceration. In L. Ben-Moshe, C. Chapman, & A. C. Carey (Eds.), Disability incarcerated: Imprisonment and disability in the United States and Canada (pp. 3–24). Palgrave. https://doi.org/10.1057/9781137388476_1
  • Erevelles, N. (2011). Disability and difference in global contexts. Palgrave. https://doi.org/10.1057/9781137001184
  • Gibbons, H. M. (2016). Compulsory youthfulness: Intersections of ableism and ageism in "successful aging" discourses. Review of Disability Studies, 12(2&3), 70-88.
  • Kelly, C. (2011). Making 'care' accessible: Personal assistance for disabled people and the politics of language. Critical Social Policy, 31(4), 562–582. https://doi.org/10.1177/0261018311410529
  • Kelly, C. (2013). Building bridges with accessible care: Disability studies, feminist care scholarship, and beyond. Hypatia, 28(4), 784–800. https://doi.org/10.1111/j.1527-2001.2012.01310.x
  • Price, M. (2015). The bodymind problem and the possibilities of pain. Hypatia, 30(1), 268–284. https://doi.org/10.1111/hypa.12127
  • Twigg, J. (2004). The body, gender, and age: Feminist insights in social gerontology. Journal of Aging Studies, 18(1), 59–73. https://doi.org/10.1016/j.jaging.2003.09.001
  • Yoshizaki-Gibbons, H. M. (2018.) Engaging with aging: The "greying" of critical disability studies. In R. Garland-Thomson, K. Ellis, M. Kent, & R. Robertson (Eds.), Manifestos for the Future of Critical Disability Studies (pp. 179-188). New York, NY: Routledge. https://doi.org/10.4324/9781351053341-16
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