In much of the social scientific and humanities research on care there is often an elision of the experiential qualities of the practices that go into caring for other individuals. Care is often portrayed as the day-to-day activities that sustain life: providing food, maintaining well-being, and ensuring bodily safety (Buch 2018; Drotbohm 2022; Fischer 2003; Tronto 2010). While these practices are vital to our everyday lives, I am interested in how care practices reflect ideas about personhood in the US through the policies, interpersonal practices, and environmental conditions that everyday institutions embody. These politics, practices, and conditions create the basis for the possibilities of experiencing care and personhood, which are enabled through their experiential qualities. Here I develop a meta-language to conceptualize what care is, what its aims are, and how we might use that meta-language to work toward reforms that make more inclusive and caring institutions through attention to their qualities.
In light of this aim, it is necessary to differentiate acts of care from qualities of care. Acts of care constitute the everyday micro-practices that support others and their being in the world (Noddings 1984). These acts include provisioning of food, shelter, and medicine, aid in toileting and diapering, keeping company and community, and other means of directly and indirectly supporting the flourishing of others. Feminist approaches to care have long stressed the importance of attending to the institutions that provide care in these ways, seeking to demonstrate their reproductive importance to society alongside institutions that are more traditionally valued, e.g., financial, political, and religious institutions (Noddings 2002; Tronto 2013).
Qualities of care are the conditions of possibility that acts of care mobilize; what does providing sustenance to another person allow that person to do, and on what basis is that food provided? The provision of an act of care is predicated on a conception of the relation between actors or between caregiver and care-receiver. These acts of care may be ends-focused but may also be an act unto themself (Kittay 1998). My use of this Kantian language draws attention to the moral field that acts and qualities of care exist within, as they both reflect awareness of the interdependences that care necessarily grows out of and mobilizes (Fisher and Tronto 1990; Kafer 2013; Kittay 2009). An act of care might reflect one or more qualities of care just as a quality of care—as expressed by an institutional arrangement or interpersonal act—may be comprised of one or more acts of care. My aim in adding this level of meta-language to discussions of care builds on the insights of earlier approaches to care that have often focused on the importance of acts of care and the institutions that provide them. Moreover, developing meta-language of care aids in attending to the theories of relationality that motivate acts of care by individuals and institutions (Mol 2008; Wolf-Meyer 2025).
I forward four qualities of caring institutions: connectivity, modularity, facilitation, and animation. I draw each of these terms from memoirs written by individuals who have been diagnosed with a neurological disorder, by a member of their family, or from an account of a caregiver. As a form of grounded theory based in the experiences of individuals and their families and disability anthropology (Hartblay 2020), this approach foregrounds the perspectives of disabled individuals. In highlighting disabled people as experts of their lives, this approach moves beyond the usual scholarly treatment of disability memoirs as anecdotal experience. Instead, my approach treats these life experiences as a form of social theory-making (Brueggemann and Burch 2006; Clare 2017). Wherever possible, I make connections between the work of these disability memoirists and existing social theory to show how lived experiences of disabled individuals and their families might enrich theories of personhood, subjectivity, identity, and community.
The four qualities of care I focus on are grounded in particular care institutions and reflected in the actions of individuals within those institutions. These four identified qualities—connectivity, modularity, facilitation, and animation—are a first effort at describing qualities of care. These limited qualities are insufficient to capture all of the underlying theories and everyday practices that constitute care, but offer a foray into describing caring practices.
The first quality of care, connectivity, is an effort to create the conditions of interdependence, providing individuals with the foundation for enacting other qualities of care. While connectivity may be predicated on forms of recognition, as in policies governing workplace and employment access, recognition often depends on identity and disease categories that connectivity does not necessarily depend on. The second quality of care, modularity, describes the shifting, non-normative contexts that allow individuals to serve in different roles. Modularity applies to both caregivers and care receivers, allowing diverse expressions of need and desire. The third quality of care, facilitation, describes how actors interact to achieve a particular end, which might include such diverse acts as communication (Rutherford 2021), sexual interactions (Kulick and Rydstrom 2015), or getting high (Bourgois and Schonberg 2009; Garcia 2010). Finally, animation comprises those acts of shared purpose, where individuals act together as actors, understanding each other as agentive and with complex needs and desires (Haraway 2003; Watts Belser 2016).
These qualities are intended to be morally neutral in their framing, providing space for actors to fill their actions with moral justification. As scholars have demonstrated, one person's act of care is another person's act of abuse, as in the provision of addictive drugs or violent interactions (Drotbohm 2022; Mulla 2014; Ticktin 2011). It may be difficult to ascertain where facilitation ends and animation begins, but my goal is not to develop these as distinct categorical phenomena. Instead, I hope to show that discussing acts of care as qualities of care provides greater fidelity in describing how institutional actors practice care as reflective of institution priorities.
The broader project that this article develops from focuses on the category of "neurological disorder" in the U.S., which was published as Unraveling: Remaking Personhood in a Neurodiverse Age (Wolf-Meyer 2020). Its first phase was based on ethnographic research in special education facilities, neuroscience laboratories, neurology clinics, and with psychiatrists and psychoanalysts (Wolf-Meyer 2015). Over time, I married that foundation with archival research on the history of American neuroscience and psychiatry across the twentieth and twenty-first centuries, particularly where American neuroscience and psychiatry focus on describing neurological disorders, their causes, and relations to ideas about communication. Most substantially, the project came to focus on the narrative memoirs of families that lived with neurological disorder, including autism, meningitis-induced deafness, stroke-related aphasia, and coma.
Foremost among the memoirs I analyzed in this project are Diane Ackerman's One Hundred Names for Love (2011), CeCe Bell's El Deafo (2014), Peyton and Diane Goddard's I Am Intelligent (2012), Josh Greenfield's A Child Called Noah (1972), Henry Kisor's What's That Pig Outdoors? (1990), the Karasik family's The Ride Together (2003), Michael Schiavo's Terri: The Truth (Schiavo and Hirsch 2006), Ron Suskind's Life, Animated (2014), and Paul West's The Shadow Factory (2008). I selected these memoirs because they do the kind of grounded theoretical work I am interested in and because they directly address the role communication plays in diagnosing neurological disorders.
What became increasingly obvious in working through the corpus of memoirs I collected was that the personhood of individuals is often contested due to their lack of communicative abilities. This motivated me to put together different kinds of experiences of atypical forms of communication to show how various forms of communication impairments influence ideas about personhood. This breadth of experiences includes those of individuals who appear to communicate normally but rely on lip reading or cochlear implants. It also includes the experiences of noncommunicative individuals in comatose states, like Terri Schiavo, who were accepted as communicating by their relatives, but who were contested as full persons in US law and medicine. Taken together, they help direct attention to the fraught role of communication in establishing who counts as a full person and what is at risk when communication is disabled or stops altogether.
These accounts of families with a disabled family member help to develop qualities of care as heuristic devices. In Unraveling, I chose to focus on families because I wanted to explicitly work against the individuation of disability into specific bodies. Centering the family foregrounds a cybernetic model of disability that accepts disability as occurring in the institutional ecology of the family and society more generally. I further develop the social model of disability to be communitarian in its commitments, building off of theories of interdependency (Escobar 2018; Kafer 2013; Mingus 2017). This is not to prioritize the experience of non-disabled family members, but, rather, to accept that disability always occurs in a more-than-individual way that constitutes individuals and families through their shared ecology of experience (Bateson 2000; Elkaim 1997).
In parallel to families and their pursuit of communication through acts of care, I focus on a series of institutions, including scientific laboratories, residential hospitals, and special and mainstream educational facilities. Across those institutions, the underlying theory of relationality that structures specific institutions provides the focus of my analysis. Institutions are both imaginary and material, and they are known by the ways they shape individual and collective action through expectations, norms, policies, and laws (Castoriadis 1998; Farkas 2019; Tournay 2011). In Unraveling, I demonstrate how the institution of the American family shapes experiences of disability. In this article, I focus on sites of residential care that are actual, situated institutions populated by caregivers and recipients of care.
Here, my focus on the care institutions represented in Titicut Follies (Wiseman 1967) and Crip Camp (Newnham and Lebrecht 2020) extends the analysis of these four qualities in dialogue with documentary media. Like ethnography and memoirs (Behar and Gordon 1996; Clifford 1988; Swindells 1995), documentaries have been critiqued for their use of editing to shape the viewer's experience based on the director's intent (Nichols 2016; Rony 1996). Documentaries are "partial" in their representation of experiences, shaped by their director's argument, but often cast as "objective" through their use of techniques like mise-en-scène and cinéma vérité. Both Titicut Follies and Crip Camp have their political aims of representing the failures and successes of care, and they represent them starkly. My interest in Titicut Follies and Crip Camp is because of this limitation in their biased representation of reality; their biases help to elucidate the qualities of care they seek to demonstrate in a direct way. These biases of the documentary form clarify connectivity, modularity, facilitation, and animation as qualities of care that organize the acts of care that institutional actors and their clients participate in.
Since the 1980s, anthropologists have steadily scrutinized the category of personhood cross-culturally. Anthropologists show that rather than an intrinsic quality, personhood is something conferred by legitimate institutional actors on specific individuals. The status of full personhood also confers rights and privileges. This has included attention to how parents withhold personhood from babies until they reach a certain age (Scheper-Hughes 1985), the ascription of personhood to nonhumans (Gell 1998), and status changes as a result of age or disability (Luborsky 1994; Messinger 2009). Across this varied work, one of the key elements of who counts as a person is who speaks for whom. For individuals who cannot speak for themselves in normal fashion, their personhood is supplemented by those who can speak for them in ways that are socially recognized. This is especially the case in the US where ideas about one's ability to communicate interior experience through language is central to dominant understandings of personhood. These biases toward the communication of interior experience include such diverse phenomena as scientific perspectives about consciousness (Damasio 2010), educational practices related to assistive technology (Jaswal and Akhtar 2019), and philosophical approaches to subjectivity (Butler 2005).
In addressing these biases regarding communication, I consider what this reliance upon linguistic forms of communication stems from and how it might be altered. Since the late 1990s, a steady stream of scholars have sought to utilize "affect" to move beyond language (Massumi 2000; Rutherford 2016; Sedgwick 2003) and to know persons and their worlds. As a theoretical tool, affect builds off of philosophical traditions that stretch back to Baruch Spinoza's (2005) materialism in the 1600s and continue in the work of Gilles Deleuze (1988), Moira Gatens and Genevieve Lloyd (Gatens 1996; Gatens and Lloyd 1999), and Elizabeth Grosz (1994). What is critical in their approach to affect is the importance of feeling and sensation as something that exists prior to language and communication. In my ethnographic work and archival research, affect points to ways to make the category of person more inclusive. Moreover, attention to affect connects the institutional qualities of connectivity, modularity, facilitation, and animation to the lived experiences of a diverse set of families as they innovate new ways to communicate with disabled family members. Atypical and experimental communication both allow for the expression of needs and desires on the part of disabled people and affect change in typical communicators in the process.
I expect the meta-language of care that I employ to be familiar, even if my terminology chafes against others' disciplinary conceptions. The grounded basis of the development of this meta-language was spurred by key words—connection, facilitation, animation, modulation—by the authors of the memoirs. As the authors account for care practices to make sense of what they are doing and why they are doing it, they name the care and its effects, which I borrow. I treat the memoir writers and care providers as theory producers and use their accounts of everyday life in their families and communities as examples of their theory as praxis. As I discuss below, each of the terms derives from specific memoirs or accounts of caregiving and also has the capacity to make sense of other experiences of disability. By assembling these qualities of care as a set of tools, they make care practices and their impacts more apparent and provide the grounds for reshaping caring practices to be more inclusive. This meta-language is an attempt to move beyond the anecdotal evidence of acts of care provided by specific individuals and families. By subsuming those challenges and successes in more capacious language, it allows us to scale up from the experiences of individuals toward theoretical frameworks that can be applied across contexts. This means taking the anecdotal and framing it so that it can travel and be tested.
Grounded theory works to unsettle traditional power relations. In the case of care, power relations structure the roles of patients, their families, and the health care workers they interact with (T. Parsons 1951; Scheper-Hughes and Lock 1987). This can include nurses, physicians, administrators, insurance providers, and bioethicists, all of whom are guided in the decisions they make by normative models of care, often enshrined in dominant forms of bioethics (Asch 2001; Eckenwiler and Cohn 2007). This kind of relationship, where power is structured and reinforced institutionally as a top-down enactment, is "vertical." As a vertical set of relations, it is characterized by institutionalized differences in power that are concretized in conceptions of individual actors and their roles (e.g., as patient and doctor) and access to resources that are controlled by those in positions at the top (Foucault 1994; Guattari 1995). This vertical organization of power is opposed to "horizontal" forms of relations, where power relations are more egalitarian, roles are less distinct, and resources are shared. Horizontal relationships sediment power relationships between strata of actors. For example, a group of patients on a floor of a hospital may have horizontal relationships with each other. Yet, as individuals and as a group, they have vertical relationships with the nurses on the floor who are in charge of the patients and control their access to resources.
This understanding of power relationships and roles leads Felix Guattari to argue for the need to develop institutional structures that lead to "transversal" relations (1984). Relationships across vertically stratified, horizontally-organized roles characterize transversal relations. In bringing people together across horizontal relations, social power is disrupted. Moreover, in these transversal relations, there are greater opportunities for shared decision-making and self-determination. Grounded theory is one step toward transversal institutions where care and its outcomes are openly deliberated and take the perspectives and goals of disabled people and their family members as paramount in decision making. The four qualities of care I discuss provide a framework for conceptualizing what the goals of care are, beyond day-to-day sustenance and the social good of care's provision. Moreover, focusing on these qualities elucidates how they shape institutions and their practices.
Titicut Follies and Crip Camp importantly occur at roughly the same time, despite the decades between their release. The camp at the center of Crip Camp, Camp Jened, was founded in 1951 as a camp for disabled children, and over the course of the 1960s slowly became more radical (Hart 2023). At the time of filming at Camp Jened in 1971, the foundations of its campers' later activism was already being developed (Horton 2020). Filmed in the mid-1960s and released in 1967, Titicut Follies was critical in the politics of deinstitutionalization in the US, widely taken as demonstration of the abuses of residential care for individuals with cognitive disabilities (Brown 1988). Wiseman's use of cinéma verité is an effort to show the everyday practices of the State Prison for the Criminally Insane at Bridgewater, characterized by the dehumanization of inmates by the staff, many of whom denigrated, ignored, or violently interacted with the inmates (Anderson and Benson 1991). Without narration, audiences were left to come to their own conclusions. Audience reactions included revulsion so severe that Titicut Follies was banned from public showing in the US for twenty-five years.
Titicut Follies was restricted in its distribution by a court ruling in Massachusetts that was grounded in its vulgarity, but found additional rationale in the potential violation of the inmates' rights of consent. The politics of deinstitutionalization continued in the shadow of Titicut Follies, which dovetailed with the defunding through neoliberalization of public facilities, placing the burden of paying for private care on families.
It is in this context of deinstitutionalization and growing awareness of disability as a social norm in the late 1960s and early 1970s that the early periods portrayed in Crip Camp occur. As the campers narrate, their families have elected to support greater self-determination of their disabled young adult children by sending them to an affirming institution that is not carceral in its organization. This context lends itself to the growing political awareness of the campers, which the documentary follows in its attention to their activism in the 1970s through the 1990s, ending with the passage of the Americans with Disabilities Act in 1990.
Released in 2020, Crip Camp portrays a positive history of disability care, where campers and counselors treat each other as equals. This leads to self-advocacy on the part of campers, many of whom went on to lead disability rights protests in later decades. Crip Camp is intended as a heartwarming political rallying cry for disability politics (Swain and French 2000), compared to Titicut Follies, which is a document of dehumanization. Both documentaries are representative of wider attitudes toward disability in the US, where disabled people are alternatively treated as passive—as inmates, patients, and subjects of filmmakers—and active, as campers, community members, and political actors. Like all texts, these films are documents of their time and reflect the intent of their makers and broader sentiments in American society about disability, care, and personhood.
In his account of deafness, What's that Pig Outdoors? (1990), Henry Kisor uses "connection" as a motivation for communication. Drawing on E. M. Forster, he writes "only connect!" to describe the internal drive he felt to learn to lip read and practice speech. I use "connectivity" to draw attention to how relations underlie interactions between individuals and between individuals and their environments (Haraway 2008; Strathern 1996). All organic and inorganic matter is connected in complex networks of interactions, and this binds bodies to their environments (Barad 2007; Margulis 1999).
Ideologies of individualism obscure these connections, casting the individual as fundamentally separate from social others and their environments. Bodily interdependencies in the care of children, the disabled, and the aged demonstrate human interconnections to other humans, and these are contexts that are intensified versions of everyday care between individuals (Barlow 2013; J. L. Briggs 1999; Myerhoff 1980). Similarly, human connections with their environment, including microbial influences, is evident through their absence, when people become ill (Benezra 2023; Sariola 2021). It is in this context that caring institutions make connections possible, both by facilitating individuals to connect with each other and by providing environments that support individuals' needs and desires. This depends both on recognizing that connections are possible between diverse kinds of people; it also depends on providing institutional contexts to make connections possible and lasting. For example, practices of inclusion in mainstream educational institutions allow neurodivergent children to develop relationships with their social worlds that have profound impacts on them and those they develop relationships with (Acevedo and Nusbaum 2020; Smagorinsky 2020); moreover, institutions that provide individuals with varieties of environments and communities to engage with provide the context for emergent connections that support diverse forms of thriving (Feeney and Collins 2015).
The second quality of care is "modularity," which points attention to how institutions produce the capacities for interaction between individuals and between individuals and their environments. As a concept, modularity draws from Felix Guattari's experience of working in the experimental residential hospital, Le Borde, where roles are distributed across the clients and care providers without respect to status (Guattari 1995). For example, therapists participate in making meals and clients lead therapeutic sessions. Modular institutions embrace a repertoire of interactional forms that create opportunities and contexts for individuals to interact based upon their abilities. Because institutions often impose structures for activity and interaction from above, which can exclude or marginalize individuals based upon their capacities, modularity highlights the importance of configuring institutions to allow for broad expressions of human ability.
More modular institutions embrace horizontal forms of interactions. Horizontal organization allows individuals to work together based on their capacities and skills to create meaningful contexts for mutual interaction. In this respect, exemplary modularity is demonstrated by residential facilities and families that create opportunities for disabled individuals to interact with people and their environments in ways that are motivated by the disabled person's needs and desires. Annemarie Mol's discussion of care as "tinkering" (2008) provides an example of modularity operating at the interpersonal level. For Mol, tinkering with the delivery of care to meet the needs of a recipient of care serves as a form of modular practice. Modularity provides individuals with opportunities and varies those opportunities to finds emergent connections between people and their worlds.
Whereas modularity seeks to create opportunities, "facilitation" aims to realize those opportunities. Facilitation is a processual interaction between bodies that aims toward an end that only can be reached—or that can be reached more immediately—through interactions between actors (Cf. Kulick and Rydstrom 2015). I draw the term from accounts of facilitated communication, including Peyton Goddard's memoir that she co-authored with her mother and a ghostwriter, I Am Intelligent (Goddard, Goddard, and Cujec 2012). Peyton finds her ability to communicate through her reliance on the motive capacities of others who support her desire to type. As a further example of facilitation, one might think of an individual with a mobility impairment. Their movement through space might be possible without facilitation from another individual or a technology—like a prosthetic limb or wheelchair—but the aid of another person or a mobility device accelerates their movement (Frank 2000; Watts Belser 2016). Facilitation is outcome-focused and creates relationships between who is being facilitated and who or what is doing the facilitating. This includes technologies that facilitate communication, from hearing aids and cochlear implants (Friedner 2022; Mauldin 2016) to cartooning and familial storytelling projects. Facilitating communication for impaired speakers changes both the speaker and the facilitator, showing how facilitation has multi-directional effects in connecting persons.
Animation is what these qualities of care build toward. Animation is the affective connection between persons that are made lively through facilitation. These connections are subtle, often existing below the level of awareness (Berlant 2011; Deleuze 1988; Stewart 2007) and become more apparent through their disappearance; e.g., grief denotes the absence of an ongoing affective connection to a loved one who has died (C. Briggs 2014; Rosaldo 1993). Becoming animated through affective connections is more possible in contexts where modular institutional arrangements enable varieties of connectivity. In Life, Animated (2014), Owen Suskind relies on Disney movies to learn to communicate by reproducing speech acts from the movies' dialogue. The experiences of the Suskind family provides "animation" as a frame for the way that affective relations are produced through shared facilitation. Animated interactions with individuals begin with the acceptance of their status as full persons—by family members, physicians, psychiatrists, and institutions—and operate through a medium. Animating interactions allow for the flourishing of nonnormative forms of personhood. These mediums of interaction might be people, technologies, policies, etc., that accept the responsibility—even if unconsciously—of facilitating others' personhood. We are all animated and animate each other through the facilitations that we provide each other. The danger is that specific individuals—and particular kinds of individuals, based upon their assumed disabilities—have these facilitations withheld, and thereby have the breadth of their personhood withheld as well.
Together, these qualities of care point toward the need to conceptualize care as composed of differentiated yet complementary practices. Caring can include some of these qualities and not others, which might lead to less successful outcomes, depending on the metrics employed to measure success (Adams 2016). Approaches to care that experiment with the needs and desires of both the recipient of care and that of the givers allow for emergent possibilities that exceed clinical and normative expectations of what care can do. Attention to the qualities of care exposes how a failure to embrace robust forms of care can lead to the continued marginalization of already disadvantaged disabled people and their families. Focusing on the constituent components of care, particularly in the context of caring institutions, shows why some forms of care succeed while others fail. Attending to the qualities of care and their outcomes helps frame the possibilities for designing and reforming institutions and their practices.
Titicut Follies and Crip Camp both demonstrate these qualities of care and their absence. These films offer stark contrasts in representations of institutions and disability. Much of Titicut Follies's harrowing footage documents client abuse by hospital staff. Like other exposes of residential hospitals from the late 1960s and 1970s, it was used as evidence to support deinstitutionalization movements, for good and bad (Brown 1988; A. E. Parsons 2018). The benefit of deinstitutionalization is that it removed many clients from abusive situations; the drawbacks are many, including the shift in funding away from care facilities and to the prison-industrial complex (Gilmore 2007), the social abandonment of people with mental illnesses (Bourgois and Schonberg 2009), and the burden on families to care for adult children without substantial support from state and federal governments (Ben-Moshe 2020). Wiseman's film was censored for decades in the US in part because of his lack of informed consent from clients and staff at Bridgewater State Hospital (Anderson and Benson 1991).
The archival footage in Crip Camp, on the other hand, depicts Camp Jened, an inclusive summer camp for disabled campers, where able-bodied counselors actively work with disabled campers as peers. In many respects, the two films depict opposite kinds of caring institutions. Critically, though, the footage I focus on comes from roughly the same period, in the late 1960s and early 1970s, and from the same general region of the US Northeast. Together, they show how varied American approaches to disability have been over the last fifty years, from its implicit criminalization to its explicit role in political movements.
It may seem that both documentaries offer ideal representations of their respective kinds of institutions and that they have been cannily edited to leave out the positive side of Bridgewater Hospital and the negative elements of Camp Jened. There may be some truth to that, but as representations they implicitly argue for the qualities of caring institutions laid out above. These calls for attention to care grow out of the filmmakers' assumptions about and approaches to disability.
For Wiseman's subjects in Titicut Follies, the medical model of disability is operative (Shakespeare 2010); the staff prioritize medical treatment for their clients' disabilities and focus especially on using pharmaceuticals to normalize behavior. This is in opposition to what some of the clients voice, specifically that what they need is fewer pharmaceuticals and more social latitude and support. By comparison, the campers at Camp Jened receive and participate in desired forms of social interaction and support as a community, including making and eating meals together. While it is true that many of the clients at Bridgewater are inmates convicted of a crime, they are held alongside individuals who might be diagnosed with autism, cerebral palsy, and schizophrenia. With those diagnoses, these people would likely be housed in a different institutional contexts that can better address their care needs. Housed together at Bridgewater, the criminal and disabled appear undifferentiated to the staff.
At Camp Jened, the social model of disability dominates. Campers are aware that their disabilities are treated as such not because of some intrinsic lack of capacities on their part but because of the lack of social affordances outside of the camp. Campers and counselors do whatever they can to include the wide diversity of individuals at Camp Jened, making a novel little society that stands in opposition to the everyday lives that many of the campers experience at home.
As a documentary representation of an institution, Titicut Follies points to what happens to individuals in the absence of robust forms of care in the institutions they interact with–they are treated as nonpersons and subject to the staff's whims. In comparison, Crip Camp shows how a caring institution can have longstanding effects on individuals, leading, in that particular case, to the early disability rights movement and the participation of many of the campers in political mobilization in the 1970s and 1980s (Fleischer and Zames 2011). After demonstrating how Titicut Follies and Crip Camp provide examples of connectivity, modularity, facilitation, and animation in action, I close by making some suggestions as to how this meta-language of care might be employed in future studies to conceptualize institutions. This meta-language aids in conceptualizing their effects in and beyond the experiences of disability of clients as well as possibilities for ethical and inclusive institutional reform.
As a type of institution, Wiseman portrays Bridgewater Hospital as more of a prison than a hospital. Its spatial arrangement is contrived to allow for the supervision of clients, either in large, open spaces where staff can monitor them, or in individual cells, where clients stay in solitary confinement, a spatial logic indebted to the conjoined history of madness and criminality (Foucault 1995; Metzl 2011). This is likely due to Bridgewater's status as both a residential facility for individuals with disabilities and for inmates designated as "criminally insane."
Wiseman shows that the institution and the staff largely do not differentiate the clients based on their disability status. Instead, the staff treat the clients as largely identical in their needs and desires. Moreover, while it might be possible for clients to interact with one another—and in one scene, a small group is seen playing catch—for the most part Wiseman portrays the clients as listless and disconnected from each other. This may be due to a relative lack of things to do since clients own few possessions and staff plan few activities. But the lack of things to do is also an effect of the spaces they inhabit. Connections between individuals are possible because of the social spaces individuals inhabit and not because of individuals' intrinsic capacities (Lefebvre 1991). As an example of this, late in the film a small group of clients are brought together for a party, but even then staff members direct the clients' interactions with each other. There is no sense that the clients' interests motivate the activities at the party. This vertical relationship between staff and clients does not allow for longstanding relationships to develop, either between the staff and clients, or, Wiseman shows, between the clients as a group.
With the exception of the eponymous talent show that opens and closes the film, Wiseman depicts few obvious planned activities or attempts among the staff to connect with the clients at Bridgewater, demonstrating its lack of modularity. Instead, Wiseman portrays Bridgewater as inflexible and impassive in its daily operations, seeking to fit the clients into the needs for the institution to operate according to its planned schedules. Where clients are seen as sources of friction for that operation they are disciplined by the staff, either through forcible restraints or changes to their pharmaceutical prescriptions. To demonstrate this lack of modular forms of inclusion, Wiseman shows men who are left to their own devices. Few have possessions to while away their time, such as a trombone played by one client. Given the institutional context of the hospital and the interactions between staff and clients, there is little effort on the part of institutional actors, whether the director or staff, to engage with clients in ways that clients appreciate. Instead, what Wiseman portrays are a few instances of individual clients dominating spaces with loud voices, playing music alone, and finding solace in debating psychiatrists about the client's treatment outcomes. Wiseman portrays the attempts at connections between clients as transitory and without institutional support for longevity.
Outside of one sequence of a client helping another client walk indoors after a period of recreation, Titicut Follies presents staff acting on clients rather than aiding them in forms of facilitation that grow from the client's desires and capacities. This includes shaving their faces, having janitors clean their rooms, and force-feeding individuals who have difficulty eating the food they are provided. Rather than engage with the clients based upon their capacities and facilitating them in achieving these everyday goals in ways that are vital to them as persons, the staff at Bridgewater do things for them in ways that limit the clients' claims to personhood based upon their individual abilities. The staff treat the clients as incapable rather than disabled.
This is most glaring in a protracted set of interactions that Wiseman documents between several staff members and a client named Jim. Jim is stripped, walked to the barbershop, shaved, and then returned to his room. Throughout the interaction, the staff harangues Jim about the cleanliness of his room. Despite Jim communicating quite clearly, the staff also jibe him that they cannot hear or understand him, a clear voiding of his personhood based upon assumptions about transparent communicative capacities. To a modern audience, it is a degree of bullying that is hard to watch, made even more so because of Jim's apparent disabilities by modern standards of neurodiversity. Where the staff could engage Jim to complete his own self-care and maintenance of his room, they instead use it as an opportunity to ridicule him and impugn his personhood. This is recalled in a later sequence when Wiseman depicts the forced feeding of a client who later dies of unexplained causes. The client is held down, talked about by the staff as "an old pro" at being force fed, but not engaged with as a person. Throughout the feeding process, Wiseman intercuts flashes of the coroner preparing the client's corpse after his future death. Wiseman's inclusion of the mortuary rites implies the death of personhood that occurs at Bridgewater through the lack of facilitating interactions between the staff and clients. This lack of facilitation between staff and clients points to how the staff's treatment of the clients as lacking full personhood has downstream effects in how the clients interact with each other. Institutional commitments to facilitation create the contexts for diverse forms of personhood to flourish.
Titicut Follies is bookended by Wiseman's footage of a talent show put on by the staff and clients. As an animating medium, the talent show might serve as an opportunity for engagements between the staff and clients. However, Wiseman shows that the performance is largely the imposition of a domineering hospital director who uses it as an opportunity for self-aggrandizement. Rather than use the talent show to connect with the clients—and for the clients to relate to each other—the talent show depicts the clients as largely disengaged from the proceedings and awkward in many of their performances. Where they do follow performance routines, they appear as individuals able to complete a routine set of steps in a performance rather than as performers for whom the performance is vital to their identity or sense of community.
This use of the clients by the staff erodes the personhood of the clients. This is most clearly demonstrated in Wiseman's recurring portrayal of a client who debates with staff about his need to continue to be housed at Bridgewater. By his account, the client had previously been at a prison and was rehoused at Bridgewater after a period of psychiatric distress. The client claims that whatever original psychiatric condition he experienced has been resolved and now the conditions at Bridgewater are having a negative effect on him. The staff see the client's attempts at self-advocacy as indications that his psychiatric condition is worsening and that he needs increased sedatives.
Instead, they might see the process of diagnosis, treatment, and care as an animating medium that allows them to engage with each other as persons with vested interests and goals. This is significantly different than the talent show that Bridgewater's director values, which is portrayed as indifferent to the experience of the disabled performers. Incorporating clients' experiences would instead provide a mechanism for the clients to relate to staff and other clients as persons with commitments to self-care and community (Cf. Myers 2015).
Where Wiseman's depiction of Bridgewater is as an institution that isolates individuals, Lebrecht and Newnham's portrayal of Camp Jened depicts an institution that makes connections possible between a diverse set of counselors and campers. The campers who come to Camp Jened identify as having been diagnosed with cerebral palsy, blindness, the lingering effects of polio, and other mobility impairments. Unlike the staff and clients at Bridgewater, counselors and campers do not discuss psychiatric diagnoses. Each of the campers is engaged with by counselors and other campers as a person with specific needs and desires, and the aims of their fellow campers and counselors is to meet those needs and desires.
This is an attempt to undo what one of the campers refers to as a "hierarchy of disability," with some disabilities being perceived as better than others due to their assumed lack of impairments and apparent ability to support long-term self-sufficiency. Instead, the campers and counselors attempt to make Camp Jened as transversal as possible and connections are made between campers and counselors largely without reference to who is a camper and who is a counselor. This is aided by the relative openness of Camp Jened's spaces. Where Bridgewater relies on cells and open communal spaces for supervision, Camp Jened has open cabins without interior walls and buildings widely spaced apart. The very act of moving between and through spaces is likely to engage multiple people as they facilitate each other's movement from one space to the next. Rather than being supervised, the openness of the spaces at Camp Jened ensure that campers can communicate and demonstrate their desires for facilitation to their fellow campers and counselors.
As one might expect at a summer camp in rural New York, campers fill their days with a variety of modular outdoor activities. These include boating and swimming, playing music, debating the relative merits of parents being overprotective, developing romances, and doing the things that teenagers do while away from their parents. Rather than the vertical set of relations that Bridgewater imposes on clients, at Camp Jened campers are depicted as doing what they want, when they want, and with the help of other people. Where the overall emotional state of the clients that Wiseman depicts might be listlessness, the campers at Camp Jened are lively and engaged with their peers, both as persons with their own needs and desires and as individual bodies that need facilitation in communicating, moving, eating, self-care, and sexual contact. During a crab lice infestation, campers aid each other in washing each other's bodies. The same kind of event at Bridgewater would likely result in forcible actions upon the clients' bodies by the staff. But for Camp Jened, the openness of the institution allows for a modular approach to the campers and their desires and needs as individuals and as a community. The campers are able to respond organically to each other and to the situations that emerge because of the modularity of the camp setting.
As mentioned above, campers actively facilitate each other in their movements around the camp, in swimming in the swimming pool, and in their other everyday activities. One of the campers that Newnham and Lebrecht focus on is Nancy Rosenblum, who speaks very slowly and often in ways indecipherable to her fellow campers. If the staff's bullying of Jim is a centerpiece of Wiseman's criticism of Bridgewater's failures at facilitation, Newnham and Lebrecht's decision to include a long speech by Nancy in Crip Camp is an effort to show the degree to which the campers are willing to facilitate each other in their attempts to communicate. After Nancy's speech, which takes several minutes, and which the filmmakers do not attempt to caption, the contemporary videographers can be heard asking if anyone understood what Nancy said. After a brief silence, one of the campers attempts to interpret Nancy's statement, which Nancy appears to agree with. It is clear to viewers that this kind of work on the part of Nancy's peers serves as an act of inclusion and an explicit acknowledgement of her personhood. Rather than assume that individuals are independent and capable without the facilitation of others, the campers at Camp Jened show that everyone is interdependent through the facilitations that are provided to each member of the community, whatever the facilitations may be. Moreover, personhood follows from these interactions and commitments to each other's needs and desires in contradistinction to the assumption that the need for facilitation is based on an individual's lack of full personhood.
One might see Camp Jened as the animating medium that creates the connections between the campers and allows for their joint facilitation. However, Newnham and Lebrecht include several scenes in which campers participate with each other through a specific shared project, including planning meals and playing music, that engage the participants in ways that address their needs and desires. This modular set of engagements, which span everyday needs and recreational interests, treat each of the campers as a person with needs and desires that can be met through shared effort.
Although not made as an explicit argument, this acceptance of each other's personhood appears integral to the campers' participation in the disability rights movement in the 1970s and 1980s. As Newnham and Lebrecht show, many of the campers become activists, first in New York City and later in San Francisco, and their participation in these efforts is based on their understanding of themselves as full persons, made possible—at least in part—by the relationships they developed at Camp Jened. Their activism depends on their communicative powers, and their physical imposition in public spaces is equally important and allows nonspeaking community members to participate in their collective activist work. As an interdependent collective, they work with other disability rights activists, making steps toward the eventual passing of the Americans with Disabilities Act in 1990. As represented by the filmmakers, the mutual interdependence that the Camp Jened campers develop is the animating medium that makes their politics possible, which is based on their shared expectations of personhood. Such a movement appears impossible in Wiseman's depictions of the radical individuation and isolation at Bridgewater; it is only the collectively-created and animating projects that the campers invest themselves in that make their activism into a political reality.
In reflecting on these two examples, I want to dwell on the question of what disability does for these people and institutions and for our understandings of personhood and institutions in the US more generally. In the medical model of disability, disability is something that an individual has, enabled through diagnosis and motivating treatment in specific ways based on its diagnosis. In the social model, a body's interactions with the social environment it exists within produces disability. With curb cuts, mobility impairments become less of a disability; likewise, in communities where sign language is widely used, deafness is less of a disability (Groce 1988).
In the medical and social models of disability, the institutions that individuals interact with provide the frameworks for conceptualizing their abilities and needs. Analyses of gender and sexuality (Martin 1992), race and ethnicity (Sojoyner 2016), class and age (Buch 2018), and disability (Price 2011) expose how many everyday institutions are built on a model of normality that is haunted by a conception of the full person who is cisgendered, white, economically-secure, and able-bodied. Starting from a position of disability and the recognition that not all bodies—or even any bodies (Davis 2002; Garland Thomson 1996)—meet this standard helps to expose the biases and forms of exclusion that are built into many contemporary institutions and their practices of care. These biases affect putatively "normal" people as well as individuals who are accepted as disabled. A disability perspective helps to expose these biases and work toward articulating inclusive institutional reforms.
The early disability rights movement has long been criticized for focusing on obvious physical disabilities, implicitly reinstating a hierarchy of disability that accepts mobility and sensory impairments as more in need of societal attention and affordance than "invisible" and neurological disabilities (e.g., Egner 2019). Since the 1990s, calls to provide care for neurodivergent individuals has been increasingly accepted as equally important to providing care for individuals with mobility and sensory impairments. These calls to address the need for caring for neurodiverse individuals and their families point to the continued hold that the medical model of disability has on how Americans conceptualize the difference between neurological and psychiatric disorders.
The medical model conceptualizes neurological disorders as disabilities but it often conceptualizes psychiatric disorders as diseases to be medicated with pharmaceuticals or treated through behavioral therapy (Dumit 2012; Martin 2007). Sidestepping that debate, the question might instead ask how to design institutions that take the absence of a truly neurotypical person as a starting point. How might attention to connectivity, modularity, facilitation, and animation open new possibilities for designing institutions that address the desires and needs of disabled people and communities? How might attention to connectivity, modularity, facilitation, and animation allow disabled people to interact with others as full persons and in environments that care for them and that they can care for?
The qualities of care discussed herein provide a set of tools to conceptualize what institutions do with those who interact with them as mediated through the acts of care provided by institutional actors. This includes not only modern caring institutions as objects of empirical analysis but also historical and cross-cultural examples of institutions. Institutions designed for the care of disabled individuals are most inclusive when they place the personhood of their clients at the core of their activities. Institutions that facilitate interactions through horizontal and transversal connections between people are most able to provide the care that individuals need and desire. This is true for schools, hospitals, and residential facilities, and is also true for families.
This framework for conceptualizing the qualities of caring institutions might be tested, however, by using it to conceptualize contexts and institutions where different forms of full personhood are operative. Moreover, if we accept Bridgewater Hospital and its staff as low in their commitment to these qualities of care across the board, and inversely see Camp Jened and its staff as high in their abilities and commitments to caring for each other and the campers, what occurs in institutions that are uneven, antagonistic or poorly developed in their approaches? For example, what are the effects of an institution that prioritizes facilitation but ignores the need for modular organizations of space and activities? Answering questions like that requires further comparative study of caring institutions, both in and beyond the US.
As a comparative approach, anthropologies of care have long focused on acts of care to demonstrate how the relational qualities of caregiving and care-receiving structure ideas about institutions, personhood, and society. In so doing, ethnographies of care have demonstrated the constraints on the provision of care, from the political economies that care exists within (Buch 2018; Rhodes 1991) to the ideological biases that disadvantage old, disabled, and otherwise pathologized people (Friedner 2022; Garcia 2010; Myerhoff 1980). In the diversity of contexts that anthropologists have pursued analyses of care, with attention to the diverse forms that care is enacted through, anthropology has succeeded in demonstrating the varieties of practice that individuals and communities conceptualize as caring.
Advancing analyses of care depends on moving past descriptions of acts of care, their supporting belief systems, and their constraining contexts, and toward meta-analyses that provide purchase into institutions and the theories that undergird their practice (Rhodes 1986). Developing meta-language that allows for the parallel study of similar institutions that vary in their practices and outcomes helps move interventions past ethnographic description and toward inclusive forms of advocacy. In doing so, qualitative analysts of care will find allies in disability advocates (Garland-Thomson 2017; Scully 2008; Stramondo 2022), for whom ethnographic analysis can forward policy reforms, as well as theoretical recompositions of the person.
Finally, how might this meta-language of care be insufficient and what other qualities do caring institutions, their staff, and clients exhibit? As a set of descriptive tools, connectivity, modularity, facilitation, and animation demonstrate how personhood is critical to the provision of care in American institutions that serve disabled populations. With those qualities, how might institutions that care for nonhumans and environments provide challenges to this framework (Puig de la Bellacasa 2017)? Only by adopting more abstract meta-language can care's composition be clearly demonstrated. In addition, meta-language helps create the conditions for how care might be reconceptualized, including attention to how institutions might be reformed to provide more robust forms of care for the clients they serve and staff that populate them. Fundamentally, care is about interdependence. What is clear from the experiences of the Camp Jened campers is that we are all full persons—regardless of our abilities—and we are all interdependent on each other. This position allows for the articulation of institutional critiques that starts with inclusivity and has the potential to rework personhood society-wide.