Networks of Queer Care: The Privatization of Social Responsibility and the Politics of Queer Generosity

In their 2021 book Forget Burial: HIV Kinship, Disability, and Queer/Trans Narratives of Care, Marty Fink cites AIDS activist David Wojnarowicz's famous statement during a 1988 protest: “If I die of AIDS—forget burial—just drop my body on the steps of the F.D.A” (13). Fink's title invokes this moment as emblematic of the interconnectedness of sick bodies and activist challenges to the neoliberal state. This example moved me as I thought about the assignment to write a review of works engaging the subject of queer generosity and ended up reviewing books specifically about queer care kinship networks and mutual aid. If generosity refers to a spirit of openness toward otherness and a willingness to contribute to meeting the other's needs, care refers to the set of actions manifesting such generosity. If generosity is the theory, care is the practice: the local, gritty, complex work enabling survival and beyond: solidarity, community, and social change.This review essay considers the books Trans Care by Hil Malatino, Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarsinha, Forget Burial: HIV Kinship, Disability, and Queer/Trans Narratives of Care by Marty Fink, and Mutual Aid: Building Solidarity during This Crisis (and the Next) by Dean Spade. These works describe how communities of people organize networks of emotional and physical support in communities of affect and reciprocity: the chosen families1 and queer worlds of those excluded from both families of origin and capitalism's conventional heteronormative and homonormative families.Questions of care have been theorized extensively by feminists and Marxists. Whereas feminist theorist Nancy Fraser called into question a politics grounded in the sphere of intimacy, Joan Tronto and other feminists elaborated arguments for reenvisioning politics based on the ethics of care.2 Marxists (including myself) are skeptical about a political practice based on intimate relationships given the role of the idealized private family as a buttress of capitalist society. On this analysis, neoliberal capitalism disables the oppressed and exploited while evacuating any public, institutional responsibility for the provisioning of the resources of care, including medical care and psychological services, home support, and transportation. The solution to relentless privatization is, in socialist and socialist feminist thought, an activist call on the state for universal “social provisioning.”3As Malatino argues, we can expand these critiques by queering care. Queer people, especially poor, trans, queer people of color, face particular and particularly oppressive regimes of disablement in the careless void of capitalist society. Moreover, as Daniel Brouwer and Charles E. Morris argue, we must engage a critique of indigence that acknowledges the experience and memory of precarity,4 defined by Judith Butler as the “politically induced condition in which certain populations suffer from failing social and economic networks of support and become differentially exposed to injury, violence, and death.”5 Isaac West has described queer generosity as a commitment not only to the judgments afforded by abstract theory but also to the recognition of concrete, local, and particular worldmaking projects.6The works reviewed here provide deep accounts of such worldmaking, of how intimacy and care sustain queer worlds, taking on the work of social reproduction abandoned by neoliberal capitalism and challenging the state and its familial norms in the process. Each work is profoundly intersectional in the theories it invokes, narratives it engages, and archives it probes. Each author is an experienced activist and community leader. Each describes formations of kin that accept the privatization of social responsibility as a reality in which alternatives must be designed and sustained. At the same time, each describes radical communities of queer care as themselves political expressions and sites of potential freedom beyond survival.The projects articulated by these authors sustain a necessary tension between the personal and the political, the private and the public, the local and the universal, and the affective and the instrumental. They emphasize the traumas of queer life in a society that does not care for—and indeed, violates—queer bodies. In addition, these works explore the limits and possibilities of the political in the context of personal suffering and material need. Each offers a vision of complex, compassionate, and collective answers to exploitation and harm. They identify and target systems of exploitation and oppression and challenge dominant ideological narratives regarding ability, care, and queer life. They also feature beautiful writing that connects personal narratives to theory, critique, and activism. Trans Care by Hil Malatino is an example of such complex work.Malatino's book is an account of the significance of care networks sparked by his dependence upon others when healing from top surgery. In what is more a theoretical exploration than personal narrative, Malatino describes the communal care webs that come into being as alternatives to exploitative, alienated, and privatized models of care “steeped in the mythos of neoliberal, entrepreneurial self-making” (2) in “a gender recognition regime we don't control” (39). In this context, care is deeply political, echoing the Marxist principle (although Malatino calls it anarchist): “from each according to their ability, to each according to their need” (2). He identifies care work as “affective shorthand for leftism,” adding, “To stand on the right side of history is to care. To be committed to social justice is to care” when you “can't trust the world to see or hold you” (13).Unpaid work with traumatized recipients of care goes beyond burnout. Participants are enmeshed in a situation featuring blurred boundaries between career and private life. In relations of interdependence, “we are triggered by one another but need one another” (25). Queer care webs operate in “interconnected spaces and places where trans queer care happens, street, club, bar, clinic, community center, classroom, nonprofit and sometimes home” in a “multivalent and necessary care hustle” (42). The “care hustle” is constitutive of and a precondition for social movements in an “infrapolitics of care” whose participants are “socially consubstantial” (43). As an example, Malatino mentions the work of the Street Transvestite Action Revolutionaries (STAR) and its leaders Sylvia Rivera and Marsha Johnson whose work fostering trans youth performs “trans4trans practices of life” (44).Malatino recognizes the Marxist-feminist valorization of the “reproductive labor necessary to economic system, un- or poorly paid; work that is disavowed but necessary for survival and flourishing” (44). However, he challenges feminist theorists of care, stressing the need for “trans” care: an ethos or set of norms and principles based on the recognition of trans people, spaces, and experience. Thus, Malatino recommends turning toward archives of trans aesthetic practice, such as that of photographer Claud Calhoun (50). Other archives include medical repositories like the Kinsey archives and the International Gender Dysphoria Association/World Professional Association for Transgender Health. These organizations have called attention to the inaccessibility of care and pressured extant standards of care to encompass those who have been refused.At the end of this short work, Malatino hails crowdsourcing, empathy, solidarity, love, and an epistemology of care (67). Malatino's examples are drawn from the experiences, organizations, and practices of trans people of color. It is a beautiful book offering a rich affective foundation, references to actually existing care webs, and a vision of loving interdependency that, Malatino insists, is far from apolitical. It oscillates productively between the utopian and the practical. With regard to the latter, I would have liked to know more about Malatino's own experience and further detail regarding the archives the book mentions but does not explore in much depth. Such specificity regarding individual experience and activist histories marks the book Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha.Although not exclusively about queer communities, this book is focused on “disabled women of color, sick and disabled queers, autistic queer/trans people of color, and many others” (16). Piepzna-Smarasinha identifies as a “disabled femme of color,” and her accounts of care work arise out of intersectional struggles in various collectives of disabled queers of color. Piepzna-Smarasinha's book resonates with Malatino's description of care webs and the ethics of reciprocity and solidarity. It also describes the exhaustion of those engaged in such care communities: The author composed the book from her bed.As Malatino does, Piepzna-Samarasinha begins with defining ethical, accessible, collective care webs marked by love and emotional intelligence (understanding isolation and terror, not taking things personally, communicating intelligibly, not assuming anything, understanding the full-time job of being disabled, sharing resources, showing up, avoiding shaming, having a broad definition of sexuality, dealing with failure, and more). Central to Piepzna-Samarasinha's argument is a definition of disability justice as an understanding that “all bodies are unique and essential, that all bodies have strengths and needs that must be met” (12). Radical care work exposes how oppressions are intersecting: ableism, racism, queer- and trans-phobia, and imperialism.Piepzna-Samarasinha's vision of disability justice is both poetic and political. Although recognizing that activism on behalf of Medicaid, the Affordable Care Act, and the ADA is important, Piepzna-Samarasinha cites a Palestinian slogan in reaction to Israeli aggression: “To persist is to resist” (24). Her perspective is based on experience in the Disability Justice Collective and the group Sins Invalid. These groups were spaces that centered the needs of disabled queer, trans, Black, Indigenous, and people of color who built communities of cultural production and mutual aid as “spaces that held our desires and our stories” (16).The book lists the principles of disability justice articulated by the Sins Invalid collective: intersectionality, leadership by those most affected, anticapitalism, solidarity across movements and across disabilities, the recognition of wholeness of people, sustainability, interdependence, access, and liberation (25–29).The care-web experiments described here include Vancouver's Radical Access Mapping Project, Toronto's Crip City, Loree Erikson's Care Collective, the Facebook group Sick and Disabled Queers, Bulldozer Community News Service, organizers of Psych Survivors’ Pride Day, Crip Sex Movements, and Detroit's Creating Collective Access (a “crip-femme-of color” project; 48). These collectives published news, art, and narratives, and engaged in political action led by working-class and poor disabled people. Each of these stories of organizing is based on personal experience, organizational documents, correspondence, and interviews with activists.The book is full of additional practical advice, for example, about how to travel as a disabled person. It offers lessons for leadership and examples of failure. It is about survival. At the same time, the book presents a utopian vision. One contribution made by these activists was the creation of prefigurative performance spaces for “imagining and building the world we want to see now. It's waking up and acting as if the revolution has happened” (149).The strengths of this book include its beautiful autobiographical writing. Piepzna-Samarasinha's voice is at once generous, loving, funny, and outraged. I believe that most disabled people reading the work would find sites of identification with the author's struggles, both personal and political. The book's intersectional and solidaristic principles are insistent. It urges readers to understand identities and oppressions as interconnected and driven by capitalist and colonial imperatives. It demands solidarity across difference.Its most significant contribution, however, lies in its concrete, detailed, and inclusive histories of radical, experimental care projects. These efforts lie at the intersection of public and private and anchor personal experience to political theory and critique. For me, the book is a profound and humbling education in the loving, joyous, traumatic, and sometimes desperate but always agentive politics of survival.Piepzna-Samarasinha's book has influenced a number of subsequent works, including Marty Fink's Forget Burial.Any account of queer generosity and care must acknowledge the core legacies of struggles and experiences of HIV/AIDS. Beginning with a narrative of their own HIV activism in the 2000s, Fink explores how such activism is about care in its beauty and power, but also the failures and disappointments that attend vulnerability. Fink's exploration of the knowledge gap in their experience thus begins to fill the knowledge gap of other scholars and activists engaged in the study of and activism around HIV/AIDS.Fink grounds the exploration of care work in the archives of HIV activists in the 1980s and 1990s whose narrative legacies “transformed how I understand my own body, my experience of becoming disabled, and how I give and receive care” (1). Emphasizing the care and activist work of trans women of color, Fink understands HIV narratives in terms of queer and trans kinship, seeking “to transform these very narratives of pathologization into opportunities for finding family and exchanging care. . . . [T]he families we form to sustain us are shaped by HIV and activist responses to it. Kinship implies a form of care that is connective in response to state violence and the refusal of care. This model of caregiving is both anticapitalist and antiableist. HIV narratives, Fink argues, “shape cultural understandings of disability in the present,” often refusing the stigmatization of illness or the politics of pity in favor of the critique of structural access barriers. HIV narratives also reveal how narratives about sex and gender are imbricated in disability rhetoric.A strength of this book is its careful and detailed attention to archives of HIV/AIDS memory. Among the sites of their exploration are the HIV collection at the New York Public Library, which houses minutes of organizational activist meetings, David Feinberg's collection of pornography (expressing the “unabashed sexual culture” of the movement; 15), the AIDS journals of artist Stuart Edelson, the ACT UP Oral History Project, and more. Fink analyzes the discourse of penal abolitionism, Indigenous resurgence, and anticolonial work, including against psychiatric and immigrant detention (21). They also conduct literary analysis of novels theory, autobiographies, stories, poetry, oral histories, zines, visual art, video, porn, and digital media. He uses these materials to “reimagine ongoing queer and trans responses to state violence and to the daily pain, grief, and care of navigating disability and death” (20).Fink's approach to the archive attempts to discover the unpaid emotional labor of caring and to create an analysis of how collective care work undercuts capitalism: “Capitalism and neoliberalism, and and and violence create to and mutual care” the work of Fink explores the possibilities of care as in narratives of queer and trans creation of care that include sometimes demands upon the state to provide care. 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