Nishida, A. (2022). Just Care: Messy Entanglements of Disability, Dependency, and Desire (Vol. 9). Temple University Press. ISBN: 978-1439919903
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Just Care: Messy Entanglements of Disability, Dependency and Desire by Akemi Nishida that makes a strong case for systematic change as the neoliberal approach to healthcare continues to oppress and control the lives of people who rely on it and work in it. Nishida highlights the existing hierarchy within healthcare, questioning which needs are considered the most important by the care system. Not only touching upon the dehumanisation and stigmatised lives of care receivers, Nishida analyses the realities and injustices faced by the care givers who often fall between identities. The book is organised into five chapters, with an introduction and a postscript written to include COVID-19 as the book was finished before the pandemic.
In the first chapter, Nishida acknowledges the role of a neoliberal-created hierarchy within the Medicaid; who is “deserving”, who is “undeserving”, gatekeeping access to healthcare. All of these resonate with the role of the disabled citizen in a neoliberal society. Nishida firmly places herself as a feminist disability studies scholar, and clearly outlines the gap in the mainstream care research that she intends to argue for in her book; there is an overlap between the care giver and care recipient populations.
Chapter two, aptly named My Body Pays the Price, begins with a quote from a disabled person who received care under Medicaid, followed by what the author describes as hysterical laughter and by a heavy, bitter atmosphere as interviewees, care receivers and care workers alike, described a neoliberal healthcare system that did not value their lives or their efforts. It is a solemn reminder of the importance of research and the benefit of using lived experience to capture the reality of living beneath such a system. By doing this, we can fight to make positive changes for people seeking social justice. I found this chapter to be the most impactful, drawing together lived experience and solid theoretical analysis to paint a picture of the fractured healthcare system in the U.S on both sides.
Chapter three highlights the friendships, relationships and comradery that can develop between care providers and care receivers and the reasons why the neoliberal healthcare system actively seeks to destroy these connections under the guise of “liability”. I found myself conflicted on this issue. I do not receive care, so I am taking an outsider’s perspective, but as someone with friends in healthcare, I have repeatedly heard how care workers should not have personal relationships with care receivers beyond the professional because it is an ethical and moral dilemma. I read on further and reflected on my approach. Had I been influenced by the system into believe that close relationships and comradery between care givers and care receivers was wrong?
Nishida addresses this by introducing a concept she calls affective collectivity, a source of human connection. Affective collectivity, Nishida argues as she acknowledges works of other scholars regarding affectivity, collectivity and neoliberalism, “fundamentally breaks the individualism entrenched and enforced in the neoliberal political formation”. It does this by forging connections, giving power to the care givers and receivers to act and exist, to regain their individuality and potential in a system that continues to oppress, divide and dehumanise.
Chapter four opened with a lived experience from Nishida as a caregiver for her disabled friend, recalling how her friend provided emotional care as Nishida provided the physical care she required. Placing herself firmly within a care collective, Nishida moved forward to discuss interdependency and how disability justice was coined by people of colour and minority identities to intersect between these identities in the fight for social justice for all. Introducing messy dependency, a term used to express the desire of people within the care system to “reclaim and illuminating their dependency”, the author critically discusses how independency, a “foundational value and virtue” of the United States, has been used to categorise, hierarchise and dehumanise people along a so-called human/dehumanisation spectrum that creates, informs and maintains social oppression in the United States. The chapter brought together disability history and theory across fields, carefully laid out and critically analysed with a concise analysis of neoliberalism, individualism and independence.
The final chapter opens with yet another lived experience, yet this experience expanded on the faults within disability studies literature for upholding what Nishida termed “ableist realities”. A thoughtful few sentences from Nishida reiterate her role as a disabled researcher and her aim for the book to connect the academic field of disability studies, culture and activism that help disabled people live their lives. Over the course of the chapter centred on bed activism¸ Nishida argued that beds can be a centre for resistance, they can be the place where a person gains knowledge and insights into their bodymind, but they can also be a space for violence and oppression. I immediately connected with this chapter; my social media accounts connect with many disabled activists, scholars and parents who offer insights into their experiences and the political systems that oppress them from their beds, couches, benches. Acknowledging that these insights are valued and a source of connection for disabled people who are undervalued in the capitalist system, Nishida once again shined through with her own personal experiences and the influence of the theorists, artists and content creators on her acceptance and understanding of the value of bed activism as a disabled person of colour and migrant to the U.S.
The postscript written after the initial publication, connects the book with the lived reality of the COVID pandemic in 2021. Reading the chapter and reminding myself of the realities disabled people have faced for the past two years was difficult. The conclusion connects the entirety of the book cleanly, and the final few personal thoughts from the author on the pandemic and “crip wisdom” left me feeling positive for disability activism and systematic change. I found some amusement in the phrase “crip-licious”, enjoying the disability humour after a heavy, informative read.
The book is carefully crafted to be informative, thought provoking and sympathetic for the challenges faced by both caregivers and care receivers. As a non-American reader, I had expected to struggle with understanding Medicaid and the complexities of the American healthcare system, but Nishida laid out the system in an accessible way. Aimed towards those in the care system, academics, and policymakers, Nishida’s book not only offers a concise explanation of the lived experiences of those within the healthcare system, but also reminds the reader why the intersectionality of academic fields is necessary when analysing lived experience.