Introduction
Mad studies has experienced exceptional growth during the first two decades of the twenty-first century.1 Yet the amount of historical research being done in mad studies remains limited. Apart from Canadian historian, Geoffrey Reaume, mad studies scholars rarely extend their gaze beyond the 1970s; and when they draw upon this recent past, they rarely utilize historical methodologies to interpret it.2 Their theoretical and methodological interventions into a number of fields, nevertheless, have tremendous import for any attempts at a reconstruction or recuperation of a mad past. La Marr Jurelle Bruce’s poetic description of mad methodology, and he and others’ further development of the concept of radical compassion have much to offer historians interested in developing new ways of thinking about madness and mad people, and the various interventions deployed in the name of “care” or “cure.”3
To date, the history of madness has been (largely) the province of medical historians and sociologists, who, despite their calls since the 1980s to engage with “patients,” have done little to develop the conceptual, theoretical, and methodological tools and frameworks that would better illuminate the many lived experiences and multiple insights of mad people.4 In this article, I draw upon my work on madness, mad people, and asylums in the United States to show how mad methodologies and radical compassion can help scholars develop new conceptualizations of the subjectivity of patienthood. I begin with a review of the historiography as it specifically relates to madness and patienthood. I then move into a discussion of mad methodologies and radical compassion as they have been developed by mad studies scholars. I then use research from my book, Writing Mad Lives in the Age of the Asylum, to show how what I am calling a mad people’s history of madness can help historians and other scholars reconceptualize the “patient perspective.” I conclude with a consideration of the challenges facing historians in their rethinking of the “patient perspective” and some thoughts for moving forward.
The Patient’s Turn?
Patients, and their many perspectives, are critical to the history of medicine, yet they remain understudied. Medical historians working before the 1960s, some of whom were physicians, did not concern themselves with patients.5 They instead produced studies that focused on doctors, diagnoses, treatments, and more broadly on the perceived advancements of modern medicine. Later social historians of medicine took a more critical approach to these topics, and by the 1980s began to incorporate patients into their studies. Yet they often analyzed the experiences of “patients” in the aggregate or relied, rather uncritically, on second-hand accounts of patient experiences, usually from physicians and family. Perhaps most important, social historians of medicine rarely, if ever, interrogated the epistemic and symbolic violence that has undergirded the development of medical knowledge and the practice of medicine for centuries.6 As Flurin Condrau has asserted, “Issues of how to write the patient’s history, how to deal with subjectivity, experience and perhaps even choice is still very much uncharted territory for historians of medicine.”7
Since the 1980s, social historians of medicine have increasingly worked to write histories that include patients’ perspectives, and in some cases, that extend beyond asylum, hospital, or clinic walls.8 Yet mad and disabled people continue only to haunt the margins of many of these studies.9 Prominent historian of madness and asylums, Catherine Coleborne, has argued that despite declarations of the need for patient-centered histories of madness, they are still rare.10 Histories of madness outside the asylum are even more scarce. Thirty years after the British medical historian Roy Porter urged his colleagues to seek out and analyze patient experiences, the editors of a special issue of Medical History (2016) argued that patient-centered histories remained largely absent from the historiography and that on a conceptual level, analysis of patients’ perspectives remained as underdeveloped in the second decade of the twenty-first century as it did in the 1980s.11 Mad people’s histories of madness – those that fundamentally rethink or extend beyond the patient perspective – are virtually nonexistent.
When mad people are present in the historiography, they are characterized in negative and ableist terms. Porter, himself, presented readers with a sympathetic, yet deeply bifurcated and hierarchical, worldview in which mad minds could be juxtaposed with reason, society and culture, revealing “two facets, two expressions, two faces.” He further marginalized the writing of mad people when he urged historians to read it in the same way that they might read graffiti, riddles, the “lore and language of school children,” or the “cosmologies of heretics arranged before the Inquisition.” For Porter, mad people were “rather like children playing at being adults” who exposed the “hypocrisies, double standards and sheer callous obliviousness of sane society.”12 In his desire to compensate for the omission of mad people’s voices from the history of psychiatry and asylums, Porter reduced them to a monolithic caricature of dominant, ableist assumptions about madness and mad people.
Other medical historians have portrayed former asylum inmates and other psychiatric survivors who wrote about their experiences or left behind other sources as polemicists, as unrepresentative of the larger asylum population, as “non-compliant,” as a “nemesis” to physician-administrators, as unreliable narrators of their experiences, and as insignificant or nonexistent in public conversations about madness and its treatment.13 They have described sources produced by mad people as incoherent and as yet another sign or symptom of their “illness.” These characterizations of mad people, which are deeply influenced by modern, medicalized understandings of madness, reveal more about medical historians’ biases towards doctors and diagnoses than they do about the evidence left behind by mad people.14
An increasing number of historians of asylums and the physician-administrators who ran them have expanded the scope of their investigations. Rich studies have provided detailed analyses of the professionalization of asylum medicine and the etiology of various disease categories; they have revealed detailed demographic data; and have explored the role of families, communities, the courts, and the rise of racial capitalism and colonialism in the expansion of various interventions. While important, this history remains focused largely on asylums, doctors, and diagnoses. When mad people appear in these histories, their stories are refracted through the courts, institution records, and the perceptions of doctors, nurses, attendants, and family members. Some of the writing of mad people has been published in edited collections of “patient narratives” but these sources provide little or no contextualization or historical analysis. There have also been a few biographies of well-known ex-inmates, Linda Carlisle (2010) and Barbara Sapinsley’s (1991) biographies of Elizabeth Packard, and Norman Dain’s (1980) biography of Clifford Beers, for example. These, however, remain limited in their focus on a single former-inmate-turned-reformer. Medical historians have been slow to engage with their mad subjects because, for most medical historians, hearing the voices of mad people and taking what they say seriously – in other words, using mad methodologies and manifesting radical compassion – would require a significant re-orientation of the way they think about the history of madness, psychiatry, and the asylum.15
Developing Mad Methodologies, Manifesting Radical Compassion
The growing global academic and social justice movement that is mad studies can help historians rethink the “patient perspective.” Although they welcome allies, scholar-activists working in mad studies seek to center the voices and experiences of people who identify as mad, survivors, users, or psychosocially disabled in any consideration of madness and its treatment. This means, at least in part, extending the analytic gaze beyond the individuation, pathologization, and medicalization of madness to a more robust conceptualization of the social creation of mental troubles and distress. It means a deeper recognition of mad or other psychosocially disabled people as embodied, agentive subjects and reliable conveyors of their own and others’ lived experiences and social positions.
Mad studies theorists have challenged their colleagues, and people outside the academy, to think of madness as a lived experience, as a powerful signifier of human variation, and as an analytic. In their work, people who inhabit or are thought to inhabit variously defined bodily conditions have become layered, agentic subjects who operate in an equally complex world shaped by local and global contexts, concerns, and transfers of knowledge-power.16 Self-identified mad black scholar, La Marr Jurelle Bruce, refers to this new way of thinking about madness and mad people as a “mad methodology,” which he describes as “an ensemble of epistemologies, political praxes, interpretive techniques, existential orientations, affective dispositions, and life strategies that activate madness and center mad subjectivity.”17 More orientation than method, more position than practice, the approach articulated by Bruce (and others) nevertheless provides researcher-scholar-activists with a new standpoint from which to engage with mad subjectivities. It opens space for the reconsideration of words, actions, and experiences that in past scholarship may have been dismissed, ignored, or interpreted as little more than evidence of the existence of madness.
The mad methodologies sketched by Bruce and others are fundamentally rooted in and enacted through a radical compassion that further enables scholars, activists, and activist-scholars to engage in new ways with mad people, or people perceived as mad. Bruce defines radical compassion as a “will to care for, a commitment to feel with, a striving to learn from, a readiness to work alongside, and an openness to be vulnerable before a precarious other, though they may be drastically dissimilar to yourself.” According to Bruce, radical compassion “seeks to forge an existential entanglement not easily loosened. It persists even and especially toward beings who are the objects of contempt and condemnation from dominant value systems.”18 When rooted in and enacted through radical compassion, mad methodologies reveal mad people as more than one dimensional, more than a representative case, or the embodiment of a diagnosis, more than a patient, or a sufferer, more than the subject (or object) of intervention, more than a victim, more than a nuisance, threat, or burden to the people around them, and more than a discursive construct. In a word, as more human than previous scholars have allowed them to be.
Mad methodologies rooted in radical compassion enable a critical evaluation of the lived experiences of mad people confined in various carceral settings, as well as the creation and further development of caring relations that extend well beyond but also include the doctor-patient relationship. When considered in this new light, patienthood is no longer a static marker of identity, but rather a process, a rite or ritual rooted in customs, cultures, social relations, and larger structural and material forces. It is bound spatially and temporally and experienced intersectionally; race, gender, class, religion, sexuality, and other markers of identity, as well as intersecting forms of oppression and marginalization, or privilege, shape mad people’s experiences of patienthood.19 People who move in and out of patienthood in turn work both individually and collectively to shape medical encounters, systems, structures, and larger social forces. Mad methodologies enacted with radical compassion do not abandon the perspectives of doctors and families, but they do move beyond them to an analysis of mad people’s inner lives, embodied realities, and lived experiences both within and outside of various forms of intervention, including asylums and other institutions, and of the relationships forged and cultures created among mad people.
Capturing mad lives in the past and creating new analytical frameworks for the “patient perspective,” requires the development of new and expanded mad historical methodologies. Fortunately for people working in mad studies, disability historians have already laid some of that important groundwork. Although they do not engage with patienthood or reference “mad methodology,” disability historians have developed effective ways of revealing past disabled lives in all their complexity and brilliant imperfection.20 Disability historians read along and against the grain of familiar sources – institutional records, patient files, court proceedings, legislative proceedings, professional and popular journals, and the like – with a radical compassion that enables them to foreground disabled people.21 Such “authoritative” sources are revealing, but even when read with an eye toward dwelling in the gaps and unmasking and interpreting coded or veiled language, they are limited.22 Produced from ableist, racist, gendered, and classed positions of power and archived in ways that establish and reinforce medicalized and pathologized ways of understanding disabled bodies and experiences, these sources have taken disability historians only so far in their critical engagement with disabled subjectivities.
In response, disability historians have turned to other sources to think more holistically and dynamically about the lived experiences, thoughts, and emotions of disabled people living in the past. Taking cues from scholars in other disciplines who have studied minoritized, racialized, and otherwise marginalized people, an increasing number of disability historians, have sought out non-textual sources. They have turned to artifacts, which can include everything from adaptive or medical equipment to artwork.23 A makeshift key, for example, created from found objects by an asylum inmate speaks to the agency and forethought of “mental patients” and provides researchers with some sense of inmates’ desire to escape their confinement or move freely about the institution away from the gaze of attendants, nurses, and physicians.24 Artifacts, unlike institutional records and other, usually textual, “authoritative” sources commonly found in archives, are especially important for thinking about the everyday experiences of people living in various carceral settings, and of disabled or mad people more generally.
For disability historians working in the more recent past, oral histories have been generative of new ideas and new approaches. Oral histories, like other sources, have limits. Yet when read or co-created in broadly inclusive and rigorous ways, they have the potential to reveal not only lived experiences, but also the meanings and messages attached to those experiences. In her innovative history of the Canton asylum in South Dakota, disability historian Susan Burch utilized oral histories, as well as a more immersive ethnographic and anthropological approach, to trace the traumatic legacies of institutional confinement among successive generations of multiple groups of Indigenous people.25 As Penny Richards and Burch have explained elsewhere, researchers have had to develop new methodologies and research ethics to write disability histories.26
Where they are available, disability historians have turned to life writing and other written “vernacular” and “experiential” sources to gain access to the inner worlds and lived experiences of disabled people, including their encounters with physicians, family, friends, and other disabled people.27 Dependent upon written language and often requiring considerable social and cultural capital and economic resources, life writing and other written vernacular and experiential sources have their own limitations. They are more abundant in the years after printing, paper production, and communication (via the telegraph, for example) became more widely accessible. They first appear in the fifteenth century in the Anglophone world and expand significantly in the nineteenth century.28 Gender, class, race, access to education, and the facility with which writers could manipulate language have also influenced the written sources available to researchers. Illiterate and poor people, some women, racial/ethnic and religious minorities, and enslaved people were less likely to produce these sources. Written vernacular and experiential sources, which can include diaries, letters, pamphlets, petitions, memorials, and memoirs, and extend to newspapers, magazines, newsletters and other niche publications, were also often curated or produced with certain intentions – reforming or abolishing asylums, or enacting certain laws, for example. These sources, like all historical sources, do not offer direct access to the past or to mad and disabled people. Yet when read with radical compassion and incorporated into broader mad methodologies that include other types of sources, written vernacular and experiential sources offer one of the few ways in which historians can study the inner worlds and lived experiences of mad and disabled people more or less on their own terms.29
Manifesting radical compassion and enacting mad methodologies rooted in a more holistic and fluid understanding of mad people, will enable a broad range of scholars to begin to think in new ways about patienthood and the “patient perspective.” Historians in particular will be able to rethink mad and disabled people’s encounters with various interventions, both inside hospitals and asylums and outside them. They will be able to explore, in more robust ways, the creation of collective, though often diffuse and fractured, communities of care that extended beyond physicians and their treatments. Extra-institutional care – what has come to be known as peer support – friendships and other relationships, and other more direct efforts to intervene in and change or abolish various interventions, have a rich history that has yet to be explored by historians who, to date, have not engaged fully with their mad subjects, and by mad studies scholar-activists who remain (largely) rooted in the present. Centering mad people in their own history, foregrounding their experiences and their voices, will enable historians to write a longer and more dynamic history of the mad cultures and communities that, until now, seemed to have emerged only in the wake of state-led efforts to deinstitutionalize asylum inmates in the mid-twentieth century.
Engaging with mad people as part of a larger popular response to the uneasy development of medicalized systems of care enables historians to move away from analyses that portray the former asylum inmate as one dimensional and as little more than a victim, or as an individual nemesis to a particular physician-administrator – in other words away from a particularly presentist, ableist, and medicalized understanding of that past. The editors of the special issue of Medical History (2016) declared that it is possible to write a history of collective mad cultures, and that little is known about these cultures. They insist that the time has come to ask new questions and to revisit the history of the asylum from new perspectives. They assert that it is the patient’s turn to speak. This, they argue will not only help historians rethink psychiatry’s past, but it will also help them create a more comprehensive analysis of the field’s continuing history.30 A mad people’s history like the one introduced here – one grounded in mad methodologies and a deep commitment to radical compassion – moves beyond even these bold claims. It moves beyond the history of psychiatry, beyond the patient perspective, beyond the asylum walls, into public conversations about madness and the asylum and the lived experiences of mad people. It, in turn, reveals the centrality of changing and conflicting relations of care in producing wider ideological and systemic shifts in the history of medicine – a process in which the individual and collective efforts of ordinary people shaped structures and cultures much larger than themselves.
Centering American “Mad Writers”
In this section, I will use my research on people in the United States whom I identify as “mad writers” and their work, which I refer to as “mad writing,” to show how a mad people’s history of madness and the asylum can help historians and other scholars rethink the “patient perspective.”31 Between 1830 and 1950, hundreds of current and former asylum inmates participated in public conversations about madness and asylums. A nearly equal number of women and men produced pamphlets, memoirs, and memorials that they presented to state legislatures. They testified, often under oath, before legislative committees, and traveled to share their stories and gather information. More than one former asylum inmate took their concerns all the way to the White House or to the United States Congress.32 The earliest extant example of “mad writing” appeared in Cambridge, Massachusetts (near Boston) in 1833. It was a pamphlet written by husband, father, property owner, and merchant, Robert Fuller, shortly after his forced confinement in the nearby McLean Asylum (founded 1811).33 The expansion of printing, paper manufacturing, and the invention of the telegraph in the succeeding decades meant that many other people like Fuller – those who had spent time in an asylum – could increasingly share their experiences, and their thoughts about madness and asylum commitment with the public. When read together, and alongside other sources, the evidence left behind by American mad writers provides a powerful, yet nuanced, portrait of family, work, asylum commitment, ward life, release, return to the community, and asylum reform, as well as writers’ thoughts on the nature and causes of madness and their embodied experiences of mental troubles and distress.34 American mad writers revealed an emotional depth, and in many instances, a commitment to survival, to one another, and to systemic change, that have not been addressed by other historians.
Over the course of the 120 years between 1830 and 1950, a broad and diffuse community of mad writers and their allies developed throughout the United States. A few mad writers had the privileges of wealth and social position, but most were ordinary American citizens. They were all white, but they came from different backgrounds and lived in different parts of the country. They spent time in both public and private institutions. Evidence indicates that mad writers read each other’s work and often collaborated with other current and former inmates and employees of asylums, as well as family, friends, journalists, and other allies in their attempts to shape the emerging asylum system.35 Individually, and collectively, mad writers and other current and former asylum inmates worked to expose the abuses of the asylum, which could include physical and sexual assault, psychological trauma, and general neglect. Although they could face fierce opposition, especially from physicians, evidence from the popular press and legislative records shows that those mad people who spoke out were often taken seriously by their contemporaries. Some journalists and politicians advocated for the inclusion of current and former inmates in investigations of asylum treatment.36 Far from the isolated and unreliable informants who have been largely dismissed by historians of medicine, mad writers and other mad people who spoke in public about their experiences, played a critical role in shaping both public opinion and legislation that governed asylum commitment and management.
The indeterminate nature of madness in the nineteenth century left room for mad people to contribute to public conversations about it, as well. Nearly all mad writers accepted that at the time of their asylum commitment they were experiencing mental troubles or distress.37 Often, they rooted their madness in rich biographies that extended as far back as their birth and early infancy. They also situated their mental troubles and distress in both their more distant and more immediate social situations and relationships with people in their lives. Around the turn of the twentieth century, when madness became more deeply rooted in medicalized nosologies, mad writers increasingly adopted various diagnoses to explain their experiences. But even then, they rarely accepted them without question or challenge. Some mad writers rejected the more elaborate and eclectic diagnoses of the early twentieth century. They concluded from experience, and from speaking with other mad people, that diagnostic labels did little in the way of providing them with relief from their mental troubles or distress.38 Whether they rejected or accepted increasingly medicalized interventions into their lives, mad writers and other current and former inmates worked to create their own understanding of their madness and its causes which they shared with readers.
Even if they turned to physician-administrators or other institutional staff for support and relief, mad writers and other current and former asylum inmates often relied on one another to survive and thrive during and after asylum commitment. Asylum inmates did not always get along, and in many cases, racial/ethnic and class prejudices and gender divisions persisted among institutionalized populations. But written (and other) vernacular and experiential evidence shows that shared experiences of madness, asylum commitment, and release back into the community were powerful cohesive forces that brought many mad people together in a collective response to their mental troubles and distress and to the various responses they encountered from the people around them. Mad people wrote letters to one another, they formed support groups in the institution, and they maintained relationships when they left the asylum. Some mad writers extended their reach beyond their “fellow suffers” to the wider public, offering their work as a means of support, information, and advice to readers.39 Through their written work, and through the relationships they formed both inside and outside the asylum, mad writers created diverse communities of care that often extended beyond the more formalized interventions of physicians, nurses, and attendants and helped to sustain them and others in similar situations. Although it has not been recognized as such, the work of some mad writers was a continuation of and valuable contribution to an older tradition in the Anglophone world of the production and distribution of medical writing that provided information and advice to a general readership.
By the turn of the twentieth century, some mad writers began to associate themselves with a longer historical trajectory of asylum protest and community formation. They referenced earlier writers and reformers and significant moments in their shared past. They also began to create more formalized networks of peer support, sometimes with their physician allies, but more often on their own, away from the authoritative and pathologizing gaze of the growing medical establishment. Formed in November 1937 in Chicago, Recovery Inc. was one of the earliest formalized networks of peer support in the country.40 The efforts of current and former inmates to support one another was not a monolithic movement, however. Disagreements arose between mad people and their allies, and among mad people, about the best and most effective ways to support one another, end stigma, and reform or abolish the asylum system. Engagement with written and other vernacular and experiential sources produced by mad people reveals the dynamism within emerging cultures of care and reform that have not been fully addressed by other historians.
Dependent upon public patronage and state support, asylums almost immediately became a popular topic of public, professional, and legal conversations that intensified throughout the nineteenth and early-twentieth centuries. Mad writers and other current and former inmates played critical, dynamic roles in those conversations. Using mad methodologies to examine the evidence they left behind reveals the many ways in which people who became patients worked not only to shape their experiences within an increasingly medicalized and formalized system of care, but also to challenge and reform that system, and to create alternative networks of care. Approaching their work with radical compassion in turn allows historians and other interested scholars to rethink key concepts related to caregiving and care receiving and the many layers of affect and violence that structured and animated the creation and continuing development of various caring relations. When made part of a mad people’s history of madness and the asylum, patienthood becomes one among multiple subject positions occupied by mad and disabled people in an expanded field of caring networks and structures. Experiences of madness and disability and asylum commitment take on new meanings in this more expansive conceptualization of the subjectivity of patienthood. They become more fluid, less bounded by the experiences and expectations of physicians, families, and legislators.
Moving Forward
Both medical and disability historians and mad studies scholar-activists have been slow to develop useful conceptualizations of patienthood, or what medical historians have referred to as “the patient perspective.”41 Rooted in divergent historical trajectories and political orientations, these fields have equally divergent approaches to thinking about and studying the development of various interventions and the experiences of the subjects of their research – and each field has largely chosen to forgo engagement with patienthood, until now.
Using mad methodologies to engage with “authoritative,” vernacular, and experiential sources in radically compassionate ways provides a solid foundation for future work, but it is only a beginning in the reformulation of the study of patients’ perspectives. As noted above, sources remain limited. Many disabled and mad people, especially those who were racialized or marginalized for other reasons, did not have ready access to the production of written materials. If they were institutionalized, racialized people often lived in segregated settings, away from the spaces and modalities of asylum care experienced by most white patients.42 Although a few early-twentieth century mad writers mentioned people of color in the asylum and revealed some of the qualities of their interactions with other inmates, as well as physicians and other asylum staff, this is not the same as having sources produced by racialized disabled and mad people.43 Historians and other scholars studying people who did not produce written sources will have to find ways to piece together their lives within increasingly medicalized systems of care, as well as the lives of those mad and disabled people who created or participated in cultures of care that predated or persisted alongside, or in opposition to, more medicalized and pathologized notions of madness and disability and their treatment. Clues exist in art, sculpture, fiction, photography, poetry, folk traditions and productions, song, dance, and other forms of human expression, as well as interviews, oral histories and traditions, and other forms of testimony. These and other sources, including more conventional “authoritative” sources, will have to be read creatively with an eye or ear toward their affective registers, meanings, and messages, and the structural violence that created many of them. Historians will have to juxtapose multiple sources to tell different stories from varying perspectives.44
But writing a mad people’s history of madness and the asylum, and other “new” patient histories, requires more than finding new sources or using old sources in new ways. It requires adopting new analytical and theoretical frameworks like those outlined here, which draw from mad studies and disability history. Historians and other scholars must think of mad and disabled people holistically, as complex, agentive, and sometimes contradictory or competing social actors who survived and thrived and suffered and died. Actions, postures, and affects must be read not only as signs or symptoms of a disabled or mad embodiment, but also as a response to mad and disabling societal structures and a form of communication not only with contemporaries, but also with posterity. Writing new patient histories will require that researchers move beyond the preferred protagonists and topics of investigation of medical historians, namely doctors, diagnoses, and treatments, and embrace a more nuanced and spatially fluid conceptualization of caring relations that includes multiple actors who occupy multiple subjectivities and varying positions of power sometimes simultaneously.
Mad people, including those who wrote about or produced other representations of their experiences, were vibrant, dynamic agents not only in their own lives, but also in broader struggles to define madness, to support one another, and to reform or dismantle the asylum system.45 Their experiences, insights, and social positions were as varied as those of the journalists, physicians, legislators, and legal authorities they encountered during their lives. The sources they produced should be given no less serious consideration than those of their contemporaries. It is time that historians hear the voices of their mad informants.