Reviewed by Kate Champlin
Content Warning: Racism, slavery, colonialism, classism, oppression, abuse, violence
This timely collection looks carefully at disability and care in a variety of ways and through a variety of ethical lenses. The collection’s contributors acknowledge that all people need care, that current caregiving can do real harm to disabled individuals, and that the interdependent care networks within the disability community may be vital sources of survival and connection. They use a series of literary examples—including Shakespeare’s The Merchant of Venice, Wordsworth’s “The Idiot Boy,” Octavia Butler’s Dawn, and Marlon Riggs’ Tongues United—to explore the space between what care currently is and what it must become. The book is a must-read for disability advocates, allied caregivers, and all of those interested in care as an ethical stance.
In their introduction, Gabbard and Schaffer acknowledge the many complexities involved with disability and care. On the one hand, many disabled individuals experience care, particularly state-provided care, as patronizing and dehumanizing. Disabled individuals are 2.5 times more likely to experience violence or abuse in general, and disabled people are often abused or murdered by their caregivers. The Independent Living Movement has suggested replacing care with assistance simply because the word care has developed so many negative connotations. On the other hand, care work has, itself, been devalued by our society. Professional care workers often suffer racist or colonialist discrimination. Many care workers live with poverty, and many are on public assistance. Non-professional care workers, such as those who care for disabled or ill family members, are frequently overwhelmed and denied valuable support. Since poverty and lack of support are also rampant in the disability community, caregivers and those-cared-for may feel equally frustrated and overextended. Our care system has not merely become impersonal and dehumanizing; the system has turned care into a commodity. Gabbard and Schaffer refer to this system as the “care industrial complex” and add that care workers are often simply treated as bodies that fill slots on a roster (9).
On a third hand, as Gabbard and Schaffer note, more beneficial forms of care can become the foundation of communities. Families of choice may grow around bonds of mutual care and support. Such care communities can become a profoundly subversive means for surviving both capitalism and the care industrial complex. Leah Lakshmi Piepzna-Samarasinha sums up this central issue by saying:
What does it mean to shift our ideas of access and care…from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful? (qtd. in Gabbard and Schaffer 4)
The collection presents both sides of the care continuum, including several examples of care that are patronizing, dehumanizing, or controlling. Lucy E. Thompson’s “Negotiating Care and Control” explores such a negative care relationship as depicted in William Godwin’s Mandeville. The “care” offered in this novel leaves Audley—a man with several disabilities related to his premature birth—isolated in his family home and subjected to constant surveillance. Perhaps worse, Audley’s caregivers devalue his skills and agency, a bias that causes them to disrupt his most important attempt to choose a life path. They end his romance with the family ward and push this woman into marriage with another man. As Thompson declares, William Godwin ultimately uses his plot to critique both absolute authority and patronizing care relationships. Nevertheless, the novel stands as a powerful example of the dangers of negative caregiving. Joseph Maddocks’ “The Very Staff of My Age, My Very Prop” considers two dehumanizing care relationships in Shakespeare’s The Merchant of Venice and King Lear. As Maddocks notes, both plays include blind characters who briefly rely on their sons for visual guidance. Both sons misguide their fathers through spatial dislocation, by refusing their father’s directions, by forcing their fathers to rely on their false information, and by lying about their own identities. Maddocks discusses these scenes in relation to several traditions, including sixteenth-century models of filial piety where able-bodied children become prosthetics for their disabled parents. He concludes that both scenes are “troubling disruption[s] to [a disabled person’s] process of acquiring disabled knowledge and alternative arrangements of mutual care” (74). Maddocks also concludes that the prosthetic model of disability is troubling because agency lies entirely with either the caregiver or the one cared for. Mutual care is impossible under this model, and Edgar’s and Lancelet’s abuse of their fathers is the inevitable result.
Other essays in the collection present more positive and mutual examples of care. Annika Mann discusses The History of Mary Prince; Prince was an enslaved woman who developed chronic illness because of the labor exploitation she endured. Prince’s narrative recounts a time when she was both immobilized by illness and abandoned by her legal owners. An enslaved woman on a neighboring property (and that woman’s legal owner) brought food, contacted a doctor, and provided ongoing medical care. Prince recalls others who took in washing for her so that she could maintain her livelihood despite severe symptoms. Prince ultimately survived slavery because of this small but vital care network. Kathleen Béres Rogers considers another small but effective care network, this one presented in Wordsworth’s “The Idiot Boy.” As Béres Rogers recounts, this care community includes Betty Foy, her intellectually disabled son, Johnny, and her ill neighbor as well as several non-human presences. These presences include the pony Johnny rides and the holly bough he carries. The roles of caregiver and care recipient constantly shift in this community. Johnny’s midnight ride for the doctor may save his neighbor’s life while his mother and neighbor teach him vital life skills. Béres Rogers highlights the concern, shared empathy, and shared joy that marks a small community grounded in mutual care.
This collection examines the contentious topic of disability caregiving from a variety of angles and through a variety of fictional examples. The authors acknowledge the current issues involved in caregiving, including abuse, racial tensions, and capitalist exploitation. However, they also acknowledge that caregiving, particularly the reciprocal caregiving embodied in care networks, is vital to marginalized populations. These extended care networks or care communities may be the future of disability and care.
Title: Care and Disability: Relational Representations
Editors: D. Christopher Gabbard and Talia Schaffer
Publisher: Routledge
Date: 2025
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About the Reviewer
Kate Champlin (she/her) is a late-deafened adult and a graduate of Ball State University (Indiana). She currently works as a writing tutor and as a contract worker for BK International Education Consultancy, a company whose aim is to normalize the success of underserved students.