I argue that deinstitutionalization should be reconceptualized as being, at least partially, about abolition of disability-related carceral spaces and logics. As such, deinstitutionalization is the biggest decarceration move and movement in U.S. history. But how and why did deinstitutionalization happen? What conditions made it possible? This chapter is devoted to examining but not resolving the debate among policy makers, social scientists, historians, and activists about what led to or was the deciding factor in deinstitutionalizing mental health and I/DD (intellectual and developmental disabilities, historically “mental retardation,” or MR). What was the perfect storm that led to mass decarceration of disability confinement in the United States?
There is agreement that the most important factors leading to deinstitutionalization are/were shifting public opinion about institutionalization, which included exposés of conditions of living in these carceral locales (institutions and psych facilities). There is also agreement that policy changes (such as the creation of Medicaid and Social Security Disability Insurance, or SSDI) made a big difference and enabled community living and community mental health to become a possibility. Cost-cutting measures are also discussed as a major motive for the closure of psych hospitals and institutions for those labeled as I/DD. Lastly, in the arena of deinstitutionalization in mental health, psych drugs are seen as a major contributor that enabled the release of psych patients. There is no agreement in the literature regarding which of these factors was more important in pushing toward deinstitutionalization.1
I want to stress that I will complicate this origin story of deinstitutionalization as opposed to providing a definitive answer as to what “caused” it. A confluence of factors in the 1950s and 1960s created the conditions of possibility for deinstitutionalization, and they cannot all be accounted for or replicated. I conceive of the emergence of deinstitutionalization as an unpredictable convergence of factors that permitted unexpected, often accidental, outcomes. Much of it was about a discursive shift, which I will discuss more fully in the next chapter regarding the prevailing theories in I/DD and antipsychiatry that advanced a new conceptualization of human worth and difference that made deinstitutionalization necessary and possible. For those looking to reactivate this “effective history” of deinstitutionalization,2 these conditions of possibility are crucial to learn from; but the confluence of all these factors, the “perfect storm,” cannot be repeated or replicated. This caveat follows the spirit of dis-epistemology of abolition, as I discuss in chapter 3, which calls for abandoning attachments to clairvoyance and certainty and instead embracing the local and the unfinished.
Here, then, I map a genealogy of the origin story of deinstitutionalization. By genealogy, I am referring to a specific methodology adapted by Foucault from Nietzsche. Genealogy calls into question the conditions constructing our present moment, becoming a “history of the present,” interested in possibilities for the future, by exposing what appears as self-evident in the present and tracing the various ways these contingencies were constructed in the past. The conditions of possibility and the hegemonic narrative of the emergence of deinstitutionalization are the topics of this chapter, while the next chapter conjures out some of the discarded knowledge that led to deinstitutionalization.
I suggest that the hegemonic narrative of deinstitutionalization as one of progress based on scientific means (advent of drugs, more accurate diagnosis criteria, cost-effectiveness, and humane policies) as the major engine that led to the closure of psychiatric hospitals and large residential institutions for those with I/DD labels, and progression of history more generally, should be questioned and not be taken for granted. Foucault notes that genealogy “opposes itself to the search of origins.”3 Much of what is conceived of as advancement—for instance, the shift from torture to imprisonment as a form of punishment, releasing people who are mad from asylums and jails and into psychiatric hospitals to become patients, and the subsequent release of mad patients into community settings—are in fact not signs of progress. Moreover, they are not so much the result of planned actions as they are an accidental outcome of unrelated changes, or of multiple unidentified processes colliding or passing through. Therefore a genealogist is looking for contingencies, not causes.4 In other words, history and our interpretation of events as historical are full of events that could have happened.5
Psychiatrization, for example, is not natural or God given; it is a specific discourse arising in a particular historical moment that had come to be seen as ahistorical and inevitable. Imprisonment as a form of punishment is also a contingency, as is punishment as a result of crime or wrongdoing. These discourses have not “been there forever and will always be there,” as some are led to believe. States’ ability to control and measure their populations is a contingency, as is the modern nation-state to begin with. The narrative I offer herein therefore is much more fragmented and critical. In this chapter, I chart the hegemonic origin story of deinstitutionalization as often told, concerning shifts in policy, the role of exposés of institutions and psych facilities, austerity and budgetary measures that led to the closure of disability carceral spaces as being non-cost-effective, and the advent of therapeutic measures like psych drugs. I will offer a more complex retelling of each component, paying close attention to the tendency to reform these carceral enclosures, in addition and sometimes in opposition to calls to close them down, which will culminate in the next chapter.
What Is Deinstitutionalization?
I define deinstitutionalization as a three-pronged phenomenon. First, as many others understand it, it is the process of closing down carceral locales, such as psychiatric hospitals and residential institutions for people labeled as intellectually and/or developmentally disabled. Second, deinstitutionalization is not only about spaces but about people. It is therefore also the movement of people with disabilities (psychiatric, intellectual, physical) from segregated spaces of “treatment” and warehousing to community living (whether or not these carceral spaces close). Such a view of deinstitutionalization enables a more complex understanding of what happened when (or whether) carceral enclosures closed down. Lastly, and perhaps most importantly, I conceptualize deinstitutionalization not only as a movement of people from one locale to another but as a social movement, an ideology opposing carceral logics, a mind-set. This understanding of deinstitutionalization as a step toward abolition of the carceral is not discussed in the literature and origin narrative of deinstitutionalization. It is this effective history that I am aiming to bring to light.
Although the controversy and backlash around deinstitutionalization still rage on, this is an important moment to take stock of what had been accomplished so far in the largest decarceration effort in U.S. history. Deinstitutionalization in most U.S. states is a reality today. Many closures of psych facilities and residential institutions for people with I/DD labels have already happened; others are under way. In 1955, the state mental health population was 559,000, nearly as large on a per capita basis as the prison population today. By 2000, it had fallen to fewer than one hundred thousand, a drop of more than 82 percent.6 The population of people with intellectual disabilities living in large state institutions peaked at 194,650 in 1967. By 2015, this number had declined to 69,557.7 As discussed in the previous chapter, the trend in deinstitutionalization for people with intellectual disabilities was accompanied by institutional closures across most states. By 2013, fourteen states had closed all their large (more than sixteen people) state institutions for people labeled I/DD.8 Other states have not closed any public institutions. Overall, 140 closures were completed or were under way between 1960 and 2010.
Deinstitutionalization is not an unrelated and inconsequential phenomenon to issues of decarceration and abolition but one with historical, contemporary, and tactical significance. As discussed in the introduction and elsewhere,9 incarceration happens not only in prisons but also in other sites of carceral enclosure, such as psychiatric hospitals, detention centers, nursing homes, and residential institutions. Although these sites are different in their rationale (treatment versus and alongside punishment), it is important to discuss them in tandem. As legal scholar Bernard Harcourt10 suggests, what we now call “mass incarceration” or the rise in incarceration barely reaches the level of institutionalization that the United States experienced at mid-twentieth century. In other words, when the data on mental hospitalization are combined with the data on imprisonment for the period 1928–2000, the highest rate of aggregated institutionalization occurred in 1955, when almost 640 per 100,000 adults over age fifteen were institutionalized in asylums, mental hospitals, and state and federal prisons.
But I want to go a step further than Harcourt, whose important research connects incarceration and decarceration in mental hospitals and in prison, to discuss the continuity of confinement.11 Throughout this book, I contend that if we are to discuss decarceration writ large, we need to look at all aspects of deinstitutionalization, including the arena of institutions for those labeled as I/DD, which Harcourt and most scholars who discuss deinstitutionalization and decarceration do not mention. The literature and discussion on deinstitutionalization have so far been singularly oriented, focusing only on mental health, so much so that when deinstitutionalization is mentioned, the only example people conjure up is psych facilities that closed down (leading to blaming activists for the “failure of deinstitutionalization,” which I will deconstruct in chapter 4). Deinstitutionalization in mental health is often taken as prototypical or the only deinstitutionalization that happened. Its centrality in terms of popular culture, scholarly attention, public imagery, and historical accounts serves to obscure the fascinating, liberatory, and contentious process and discourse of deinstitutionalization in I/DD.
The book’s goal is to combine analysis of deinstitutionalization, as decarceration, in both mental health and I/DD for several reasons. It is imperative to understand institutionalization and therefore deinstitutionalization in all its forms. The breakdown and categorization of people and services into discrete categories, such as “mentally ill” versus “mentally/intellectually disabled,” is a particular historical form of subjugation created by specific therapeutic/managerial/medical discourses prevalent in each era. For example, prior to the nineteenth century, there was no apparent distinction between intellectual and mental disability.12 The poorhouse in the early nineteenth century did not simply provide shelter for the indigent. It was a catchall for all who were deemed dependent, unproductive, or dangerous. This system of warehousing together all the needy populations lasted in various degrees until the 1930s.13 In addition, during this eugenic era, the category of “mental defectives” emerged as a way to distinguish those with intellectual disabilities from other “defectives” and general “degenerates.”14
In terms of confinement and carcerality, these categorizations—mentally ill, mentally defective/degenerate, feebleminded—resulted in segregation and often institutionalization, albeit in different carceral enclosures in various eras, such as asylums, poorhouses, and then separate institutions such as jails, psychiatric facilities, and residential “schools.” Many reformers and progressive associations did not distinguish between various dependent populations and their underlying circumstances. For instance, the National Conference on Charities and Corrections, founded in 1874, became the nation’s leading association dealing with pauperism, insanity, delinquency, prison reform, immigration, and feeblemindedness.15 At that time, there was no clear policy segregating the “worthy” (aged, widows, orphans, disabled) and “unworthy” dependents (poor, unemployed, criminals). Such separation began at the turn of the mid-nineteenth century, when different facilities were beginning to be sought for different populations. With increased authority of medical knowledge, there was a move from notions of punishment to notions of medical and moral treatment of those previously deemed as deviant and now seen as “abnormal.” The idea was to reform people, to correct them, and to do so in separate facilities adequate for their lot in life, such as poverty or illness. Because of the later separation between so-called mental illness and mental retardation, the causes and outcomes of deinstitutionalization in each arena were related but also different. I discuss these outcomes at the end of this chapter. First, though, I discuss deinstitutionalization writ large, combining I/DD and mental health, when feasible.
Formation of New Policy
According to the literature and the hegemonic origin story of deinstitutionalization, one of the most impactful changes that led to the ability to care for disabled people in the community and to deinstitutionalization and closure of facilities was policies and the promise of accompanying funding to do so. Although federal policies certainly created the infrastructure that enabled deinstitutionalization, I suggest that such policies were one contingency among the conditions of possibility that created what we have come to call deinstitutionalization, but contingencies are not causes, as Foucault reminds us. The first was the proposed creation of community mental health centers and “community facilities” for those with intellectual disabilities, and the second was the creation of federal support programs such as Medicare and Medicaid.
The hegemonic story focuses on legislation and policy changes beginning with the Kennedy (and Shriver) family, culminating in John F. Kennedy’s presidency. This is for good reason, of course. President Kennedy had intimate ties to issues of mental health and intellectual disability. His sister Rosemary was labeled as “mentally retarded” after being lobotomized in the 1940s, when she was twenty-three. The lobotomy was initiated because she had exhibited erratic behavior and was seen as disabled since birth.16 After her botched lobotomy, Rosemary spent most of her life in an institution away from the public and her family, who only acknowledged her condition after JFK was elected president.
In 1961, JFK formed the President’s Panel on Mental Retardation, which comprised professionals and experts, mostly medical, educational, and legal in the field of MR. In 1962, they presented 112 recommendations for a comprehensive federal approach to intellectual disabilities and urged him to “think and plan boldly.” Among the recommendations were to boost educational programs, improve social services, improve facilities for care, and increase educational opportunities to learn about so-called mental retardation, which was done through legislation to establish research centers in universities that study I/DD. It also introduced a new legal and social concept of mental retardation, which is discussed in the next chapter and has been much debated since.17 It is important to note that the recommendations were couched in medical discourse and that those with intellectual disabilities (and for the most part their families) were absent from the analysis and from the body making the recommendations. The report was promoted as one to “combat mental retardation,” and the focus, in addition to programming, was on prevention and cure.
In 1963, President Kennedy gave a “Special Message to the Congress on Mental Illness and Mental Retardation.” In it, he proposed three key areas of focus: “First, we must seek out the causes of mental illness and of mental retardation and eradicate them. Here, more than in any other area, ‘an ounce of prevention is worth more than a pound of cure.’” Second, he proposed a focus on staff by providing aid for education and creating a more skilled workforce. “Third, we must strengthen and improve the programs and facilities serving the mentally ill and the mentally retarded. . . . Services to both the mentally ill and to the mentally retarded must be community based and provide a range of services to meet community needs.” This created a major shift of funding from institutionally based responses to treatment of disability to community-based ones. This push from then president Kennedy is seen as the sounding bell for deinstitutionalization, or at least its infrastructure.
The same year, the Mental Retardation Facilities and Community Health Centers Construction Act authorized federal grants for the construction of fifteen hundred public and private nonprofit community mental health centers (CMHCs) nationwide. Each center was required to provide inpatient services, outpatient services, consultation and education on mental health, emergency response, and partial hospitalization. The promise of the creation of these CMHCs never really materialized. But ideologically, the act showed promise in shifting the discourse of institutionalization to focus on community support and provided an impetus for closure of institutional settings.
Mental health and I/DD policy changes emerged as part of broader social welfare reforms during the 1960s when Medicare and Medicaid were established through passage of the Social Security Amendments of 1965.18 The expansion of Social Security (income based) and Social Security Disability Insurance also provided some financial resources for people discharged from hospitals and institutions. To take advantage of these financial incentives, states moved patients out of mental hospitals and into community-based outpatient facilities. Thus the cost of care in mental health and I/DD was shifted from states to the federal government, which, at least in theory, had more funds. The passage of later legislation, such as Section 504 of the Rehabilitation Act in 1973 and the Education of All Handicapped Children Act in 1975, would push the pendulum even further against segregation and toward inclusion of adults and children with disabilities.
The same policies and financial incentives credited with leading to deinstitutionalization also led to its inability to be realized de facto. For example, to date, there is inherent institutional bias in programs such as Medicaid, due to their funding stream, strong political lobby and staff organizations, and (often underutilized) unions.19 This bias means that money, in the form of benefits or waivers, goes toward institutions, nursing homes, or group homes but not to the person who benefits from these services directly. The introduction of Medicaid money mostly applies to alternative institutions (nursing homes, hostels) and not to alternative care or forms of mutual care. As a result, these policies that were seen as an engine to deinstitutionalization actually provide incentives against it and against services like nonsegregated long-term treatment or advocacy and support for living in the community.
There is no doubt that however one measures the impact of these policies and reimbursement procedures, especially in the arena of mental health, they indeed had a large impact on those institutionalized and on the ability to prevent further institutionalization en masse.20 But I want to underscore that the pendulum toward deinstitutionalization did not begin with these policies, although they were certainly initially solidified by the availability of such public funds. Remember that the institutionalized population in psych facilities started declining from 1955 (when the hospitalized population was at its peak). So, although the advent of such policies decreased the reliance on long institutionalization and psych hospitalization, these policies did not begin it. Some of these changes had already been under way since the post–World War I period. In 1954, governors of all states, except for Nevada and Arizona, met in Michigan to discuss what to do about “the problem of the chronically mentally ill.”21 Although it is unclear if the proceedings resulted in changes in all states, the convening itself resulted in heightened public attention to an issue that was not previously perceived to merit national intervention.
In addition, in 1955, JFK commissioned a federal study on the state of mental health in the United States, long before his speech to Congress. The Joint Commission on Mental Illness and Health was created, in 1955, by the American Psychiatric Association and the American Medical Association.22 The joint commission’s report, Action for Mental Health, came out in 1961, after five years of deliberations, and provided the first comprehensive analysis and recommendations on issues of mental health. It concluded that community-based treatments were essential and recommended a continuum of community-based and hospital services. I critique this continuum approach in the next chapter and in chapter 5, but suffice to say that while hospital services continued to be recommended and funded, the funds and ideology had not shifted to community-based approaches.
While these recommendations were beginning to be digested by Congress, policy makers, and advocates, the decrease in psych hospitalization was already under way. If we again follow Foucault, we can see that the origin, the birth story as narrative, masks the chain of singular events, events of error, discontinuity, and chance. In her polemical book on deinstitutionalization in mental health, Ann Braden Jonson acts much like a genealogist and suggests that deinstitutionalization was never really planned; rather, it happened because of a variety of circumstances that were not closely related or arranged.23 The process was not even named until about twenty years after it started to happen. Johnson maintains that it was the backlash and critiques against psych hospital closures in the 1960s and 1970s that gave deinstitutionalization a name for a phenomenon that began in the 1950s.
Importance of Exposés
Deinstitutionalization was a confluence of many factors, including growing critiques of carceral logics of disability-based incarceration, which is one component of my definition of deinstitutionalization. One of the most impactful factors that led to questioning the efficacy of psychiatric hospitals and I/DD institutions was a slew of exposés in print and visual media.24 The emergence of photographic journalism, of the documentary form, at that time aided in the popularization of visual exposés. As the word suggests, these documents exposed conditions of living in these carceral spaces. But they also exposed the general unaffected publics to the fate of many of those “out of sight and out of (their) mind.”25 Exposés brought the plight of those institutionalized into headlines in widely read magazines and later to American TV screens. They were certainly affective tools and formative for many of that generation, as they appealed to people’s emotions (empathy, horror, humanity, anger) and therefore went beyond arguments about policy or fiscal matters, which the general public was neither interested in nor aware of. But despite their sustained affect, I contend that they were not a factor leading to deinstitutionalization, as much of the literature on the origin story of deinstitutionalization suggests, although they were important for other reasons, which I discuss later. Instead of leading to deinstitutionalization, the focus on conditions of confinement resulted in reforming and not shuttering these facilities.26
Numerous and repeated exposés of mental hospitals and institutions have been conducted by journalists, professionals, and scholars since the turn of the twentieth century. They became more widespread during and after World War II, largely because of the placement of conscientious objectors in hospitals and I/DD institutions as a civil service substitute to military service.27 These exposés presented residential institutions as deplorable, as inhumane, and as serving warehousing functions, often alluding to concentration camps in their imagery and textual references. The allusion to concentration camps would also coalesce later around demands for their closure. As historian Anne Parsons suggests, during World War II, politicians could overlook the conditions in these places, but public outrage after the war made them impossible to ignore any longer.28
The establishment of the National Mental Health Foundation by conscientious objectors during World War II aided in exposing mental hospitals as “snake pits” during the 1950s. A prominent exposé of that era is of interest here, both for its damning content but also for the analysis of reform it can offer. In 1946, Life magazine published the article “Bedlam 1946: Most U.S. Mental Hospitals Are a Shame and a Disgrace.” It was written by Albert Q. Maisel and was based on his interviews with conscientious objectors at Byberry Hospital in Pennsylvania.29 In 1951, Life published a follow-up article based on Maisel’s recent visits to thirty psych hospitals around the country, titled “Scandal Results in Real Reforms.” Both articles were accompanied by damning images, and both were widely read.
Maisel’s second article is interesting, as it begins clarifying the pendulum swing between discourses of reform and of abolition. In the 1951 follow-up article, Maisel applauded the increased budgets most states designated to psych hospitals since the original 1946 exposé and the increase in hospital staff, which he described as hopeful steps. He also emphasized the decrease in admissions to psych hospitals for the first time in a century. Maisel describes an interesting conundrum emerging between what he called “brick-and-mortar” reformers, who advocated for more construction and staffing given to hospitals and institutions, versus those who advocated for intense treatment that would enable patients to return to the community faster. Maisel does not resolve the quandary, but he does present it as a dilemma between policies and (perhaps) values. Reform here is presented as nuanced, what I explain in later chapters as nonreformist reforms, and we can begin seeing the pendulum between reform and abolition of these institutions.
The article was accompanied by photographs, one of which depicted the governor of Minnesota in 1949, Luther Youngdahl, burning straitjackets to symbolize the end of the inhumane congregate treatment of the insane. This image is reminiscent of eighteenth-century reformer counterparts Philippe Pinel in France and William Tuke in England, who began to remove mad people’s restraints after exposing their treatment in chains as inhumane. They then began treating mad people as mental patients in (what would become) hospitals, as Foucault documents.30 Burning straitjackets is meant to signal to the reader of Maisel’s exposé an end to a decrepit and premodern time in which the mad were treated as pariahs or in punitive ways. The fire indicates that modern societies had moved to new modern, scientific ways of understanding, not madness, but mental illness. When the mad became mental patients, Foucault claims that moral chains, feelings of inadequacy and guilt, replaced the physical chains of an earlier epoch. The institutions became a monument for a new discourse—that of science, of reason, which now no one could escape, not even into madness. Instead of being sinners and morally objectionable, people who were deemed deviant were now viewed as pathological, in need of therapy, rehabilitation, correction.
Such narratives of progress as symbolized in the photograph from Maisel’s essay should not be conceived of as an epoch of moving from repression to liberation. As Foucault warns, reforms such as releasing the mad from their chains is what brought us the advent of incarceration in specialized facilities. The social processes that led to increased confinement of a variety of populations did not only come about from above, whether from kings or governments, but also came out of the vigorous advocacy of reformers. Psychiatric hospitals in the United States were founded partially out of efforts of religious reformers, such as Dorothea Dix, who sought to liberate the “mad” from oppressive conditions in which they were kept, in chains and squalor, and instead provide them with therapies in hospital-like confined settings. Therefore such imagery of “freeing the mad” by releasing them from chains or burning their straitjackets shows not only a hegemonic narrative of liberation but a long history of reform, which ended up increasing the net scope of incarceration, not shrinking it.
These journalistic condemnations of the plight of those incarcerated due to their disability were not limited to psych facilities. If, up until the 1960s, exposés of institutions focused on hospitals for the “mentally ill,” in the late 1960s and 1970s, exposés of state schools and institutions for those labeled as MR (now I/DD) became more prominent. In 1965, Senator Robert Kennedy made unannounced visits to New York’s Willowbrook and Rome state schools for people labeled as MR. What he saw there shook him and led to a series of proposed changes. Kennedy’s visit was widely broadcast; in his statement, printed in national newspapers, he likened the conditions at Willowbrook to being worse than housing animals in cages in a zoo, “living amidst brutality and human excrement and intestinal disease.”31
Many objected to his depiction of what he saw in these institutions. In response, Burton Blatt, then a professor and educator at Boston University who was becoming a leader in special education and the field of MR, decided to prove that the conditions Kennedy described were not an anomaly but the essence of what institutionalization had become. As he wrote in 1966, “in fact, we know personally of few institutions for the mentally retarded in the United States completely free of dirt and filth, odors, naked patients groveling in their own feces, children in locked cells, horribly crowded dormitories, and understaffed and wrongly staffed facilities.”32 In 1966, Blatt enlisted the help of his friend and photographer Fred Kaplan to take candid photographs in back wards of four institutions for those labeled as MR in the Northeast. Kaplan would use a camera held onto his belt or briefcase to take pictures on tours of institutions, unbeknownst to most or all of the staff and residents. The appalling account of what they saw was published as Christmas in Purgatory.33 The book begins with the now infamous lines “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.” Blatt ends the introduction with his characteristic pathos: “It is fitting that this book—our purgatory in black and white—was written on the 700th anniversary of the birth of Dante.”
Part I of Christmas in Purgatory is a damning photographic display of black-and-white candid photographs depicting half or fully naked incarcerated adults lying, sitting, and staring aimlessly in barren but overcrowded rooms. Blatt and Kaplan chose quite different scenes for part II. It displays pictures, taken with permission this time, at Connecticut’s Seaside Regional Center, a smaller, newer facility housing 250 residents with intellectual disabilities and 100 staff. The residents had access to employment (sheltered workshops), education (segregated classrooms), and one-on-one care (for eating, bathing, and other activities). There was still no privacy, and the cribs looked like cages, but the walls were decorated, there were stuffed animals on the beds, everyone was fully clothed, and some were smiling. The point of this part of the book was, in Blatt’s words, “our way of communicating our deep conviction that many of the severe conditions with which you are about to become involved are not necessary consequences of the fact of institutionalization of mentally retarded individuals. These problems are largely the result of inadequate budgets, inferior facilities, untrained personnel, and haphazard planning.”34
In other words, the disaster shown in part I is of our (“society”) doing, not about the capacity of people labeled as disabled to learn. And it is on us to change part I to appear more like part II nationwide. At that point in time, Blatt and Kaplan constructed their call for action in terms of reform, but they also presented a (literal) picture of what could be done otherwise, not in the future, but a future that is already here. Because of the affective, material, and aesthetic differences between the two parts of the exposé, the second part is presented without any critique. This, the readers are poised to surmise, is progress, humane segregation done right. As we shall see in the next chapter, Blatt would come to abandon this reformist position later in his career and call for the abolition of all such facilities.
One year later, in 1967, Blatt published a version of the exposé in the widely distributed Look magazine. It garnered much attention from the media and the public, including many professionals who all agreed that the conditions in institutions were deplorable and in need of serious change. In 1974, Blatt received the Humanitarian Award from the American Association on Mental Deficiency (now the American Association on Intellectual and Developmental Disabilities) and was elected to serve as the association’s president in 1976. But large residential institutions for those with I/DD labels and other disabilities were still pervasive, despite the reach of Blatt’s work.
There were other news stories over the years in a variety of publications, but they did not elicit any more significant changes. The late 1960s and early 1970s brought with them exposés in another visual medium, the television, which brought about a national moment of reckoning for U.S. publics about the reality of institutionalization. In 1968, a local TV channel in Philadelphia broadcast its exposé of Pennhurst, the infamous large state institution for those with I/DD labels. Under the name Suffer the Little Children, the televised exposé brought the issue of institutionalization, and especially the conditions at large spaces of enclosure like Pennhurst, to the public’s attention, especially locally. It also created an outcry that eventually led to the lawsuit that necessitated the closure of Pennhurst, discussed more in chapter 7.
But it was not until 1971 that an exposé made national news and brought the issue of institutionalization to every home in America. The exposé targeted Willowbrook, the same institution visited by Senator Kennedy and Blatt a few years earlier. The focus on Willowbrook was not surprising, considering that by the mid-1960s, the institution housed about six thousand people with intellectual disabilities and was the biggest such institution in the United States. The timing is also not surprising in hindsight, as all the factors lined up to produce the conditions of possibility for a major national outrage. In 1971, budget cuts and therefore a hiring freeze were announced in a facility that was already understaffed. Tension and pressure were already in the air when a few residents and doctors at the facility decided to break the story nationally. After getting nowhere with the administration, Bronston and Wilkins, two physicians working at Willowbrook, called their acquaintance, then journalist, Geraldo Rivera, who took a cameraman and visited Willowbrook unannounced.
To give an account of what transpired at the facility at the time is chilling (and potentially triggering, read with care). Bronston described the conditions in the institution at the time: “The place was pandemonium all the time, shrieking, stench, chairs flying, people unconscious, asleep on the floor after being drugged daily, burned both from laying against the radiators and injured by the daily detergent concentrate used to swab the floors . . . nudity and humiliation the norm, violence the norm. I mean, all the time. It was all blamed on ‘mental retardation.’”35 What Rivera’s exposé did was to bring the issue of institutionalization to the homes of everyone with a TV in the United States. It stayed on the news for months, and many remember it to this day. Rivera’s televised exposé on ABC opened the door for more reports in the New York Times and the Village Voice. This resulted in heightened public interest in Willowbrook and the conditions at mental institutions more generally, leading to lawsuits.
Blatt published his monumental and striking photographic exposé in 1966. In 1979, eight years after Rivera’s televised exposé, Blatt revisited these same institutions and found no great improvement; they were just “mildly cleaner snake pits.” The setting was smaller, much cleaner, and the inmates were clothed. But just like Maisel’s follow-up article in 1951 (to his original exposé from 1946), scenes of idleness, boredom, and inhumanity abounded. Rivera also went back to Willowbrook a year after his exposé in 1972 and found that the conditions were not much improved. As Blatt wrote in his introduction to the follow-up book, “As you will see, everything has changed during the last decade. As you will see, nothing has changed.”36
Although there is no doubt that these exposés did indeed lead to some measures of reform at least in some places, they did not lead to the desire to abolish these spaces, only to change the conditions of confinement. As Steve J. Taylor writes in his expansive and revealing book Acts of Conscience regarding cycles of reforms in institutions for people with intellectual disability,
perhaps the institutions had changed between the 1940s and the 60s, but then what is change? A day room of 100 or 150 half-naked people is probably better than one of 250 or 300 naked people. A room with some benches and chairs and a television is probably better than one with none of these things. A ward staffed by three or four attendants is probably better than one staffed by one or two. A punch or a slap is probably better than being beaten with a pipe or a rubber hose filled with buck shot. None of this, though, should be confused with real change in how some of the most vulnerable people in our society are treated.37
I am quoting this passage at length not only to give a disturbing picture of the conditions of confinement in these institutions at that time—and certainly not to make the reader fall into a false sense of progress portrayed in these exposés. These notions of progress, arising from exposing conditions inside and comparing them to seemingly humane policies, are more about the stories we tell ourselves about progress in relation to dealing with difference than they are about the actual lived reality of those incarcerated. In addition, what Taylor and his book, as well as my analysis of Blatt’s and Maisel’s exposés, point to is the slippage between reform and status quo, as opposed to abolition. Changes within the carceral apparatus did little to abolish it and especially to abolish its logic, to question its necessity and its underlying rationale for confinement and segregation of people because they are different and seen as dependent.
In addition, such shock-and-awe campaigns, presented through these exposés, can further ableism in several ways. Because of the sheer abjection and lack of agency presented, such exposés can further the oppression of incarcerated disabled people by viewing them as inherently incapable of life outside these carceral spaces, despite the goals of Blatt and others. It can also lead viewers away from solidarity or understanding they are part of shared communities of struggles, for example, the larger nascent disability rights (which focused on physical disabilities) and human rights communities. Lastly, because these exposés were mostly done by nondisabled (or not cognitively or psychiatrically disabled) white men, they did not focus on disability as a cripistemology,38 as a framework from which to create social change. As I suggest throughout the book, disability as a political condition can be mobilized for social change not as a deficit but as a possibility for being and living otherwise. For this reason, in the next chapter, I briefly discuss self-advocacy and mad movements that critiqued institutionalization from within.
My broader contention is that the focus on deplorable conditions may have assisted in shaping the public’s view as to the abuses taking place but it did not lead to abolishing these spaces of confinement; instead, it led to calls to reform them, which often aided in prolonging and justifying their existence. As Rachel Herzig and other abolitionists suggest regarding campaigns focusing on alleviating prison conditions, such measures perpetuate the myth that the system is broken and therefore in need of improvement.39 But the system is not broken;40 it performs based on its espoused rationales (segregation, confinement, incapacitation), and only once the rationales have been disputed can meaningful change occur.
I suggest therefore that deinstitutionalization should be conceived not only as a process, of people exiting hospitals and institutions for a variety of reasons, or as a form of progress from warehousing to reforming carceral enclosures to be more humane spaces of confinement. Instead, if deinstitutionalization is at least also a demand for the abolition of disability-based confinement, then exposés could be seen as a step in the direction of questioning the efficacy of such carceral locales, but not necessarily as a critique of their rationale and raison d’état. I discuss the latter—deinstitutionalization as a call for abolition—more in the next chapter.
Class Action Lawsuits
The legal arena was a major battleground on which deinstitutionalization started to be implemented de facto. Important class action lawsuits came as a result of these exposés and took the battle over conditions of confinement into the courts. In the 1960s, and more strongly in the 1970s, public interest law gained prominence, and numerous lawsuits were brought against psych hospitals, residential institutions for those with I/DD, forensic psych facilities, and prisons. In addition, several organizations were established that specialized in disability and mental health law. Since the early 1970s, there have been more than forty-five lawsuits filed against state institutions for people labeled as MR.41 There is a high correlation between litigation and reduction in institutional populations. For instance, the five states that ranked highest in depopulating mental institutions between 1988 and 1992 had court orders or consent decrees in place at that time.42
I devote chapter 7 to detailing the genealogy of institutional reform litigation, its effectiveness and consequences, why it waned over time, and the ways litigation regarding prisons is connected to institutions, but I would be remiss not to include a few trailblazing cases in deinstitutionalization litigation here. Wyatt v. Stickney, in Alabama, was one of the first legal challenges to confinement in psychiatric and MR institutions. It was filed initially on behalf of an employee and a patient at Bryce Hospital, for people with mental illness, in 1970 and expanded to include Partlow State School for people with MR in 1971. The Wyatt case became a landmark case because of two major factors. First, in his ruling, the judge affirmed that people labeled with mental illness and MR who are committed to institutions have a right to treatment (in the case of mental illness) and habilitation (in the case of MR). In doing so, he created standards of treatment for those confined in psych hospitals and institutions, which later became national standards.
Second, because the ruling affirmed that those confined have a right to treatment and because it also created standards for such care, it could then be utilized as a deinstitutionalization (and not just institutional reform) strategy. As Steve J. Taylor suggests, the hypothesis of the lawyers in the Wyatt case, and other deinstitutionalization cases, was that the prohibitive cost of rehabilitation and treatment would necessitate the release of patients into other settings and ultimately result in the closure of the institution,43 which was a novel strategy in class action litigation. Third, the Wyatt case was also a landmark because it lasted thirty-three years, making it the most litigated and costly mental health lawsuit (estimated over $15 million in litigation costs).44
Another landmark case came in relation to and following the pervasive and damming exposés described earlier, the 1972 Willowbrook case New York State Association for Retarded Children v. Rockefeller in New York. In it the court ruled that the right to protection from harm entitled those confined to Willowbrook to safety, a tolerable living environment, medical care, and freedom from conditions that “shock the conscience.”45 It took three years from the start of the suit until the consent decree, which was a watered-down attempt to decarcerate Willowbrook residents in phases. Willowbrook finally closed in 1987, fifteen years after the suit was filed.46
It was not until the Halderman v. Pennhurst State School and Hospital case, filed two years later, that the institutional logic itself was placed on trial. In it, the judge opined that “the confinement and isolation of the retarded in the institution called Pennhurst is segregation in a facility that clearly is separate and not equal.”47 He therefore ordered Pennsylvania to provide community living arrangements for those at Pennhurst and, by extension, to close down the institution. The suit was brought on by David Ferleger and colleagues at the Mental Health Law Project. As their name suggests, they were quite knowledgeable in issues of psychiatric hospitalization and its legality, but Pennhurst was one of their first forays into litigation in the arena of I/DD. This chasm, again, speaks to the social differences between I/DD and mental health. Ferleger wrote that he was familiar with the abuse and conditions in institutions for the so-called mentally ill but was unaware of what was happening in institutions (ware)housing people with intellectual disabilities at the time. After all, he recounts that “the letters and phone calls . . . received from people confined as mentally ill were not echoed by people confined as retarded.”48
Overall, these cases had some effect, especially in making states implement plans to reduce reliance on institutions. It is estimated that about two-thirds of those with mental disabilities were deinstitutionalized in the 1970s, and court orders due to class action litigation and its resulting consent decrees certainly facilitated this outcome. In 1975, New York State signed a consent decree that required it to relocate the 5,323 residents of Willowbrook to community-based settings at a rate of about 50 people per month. A similar consent decree was signed in Massachusetts in 1977, and in 1978, Washington, D.C., ordered the city to release residents from its thirteen-hundred-bed institution for those with intellectual disabilities.49 A decade later, in 1985, Maryland promised to increase community residential services through a consent decree, and Minnesota was required to limit the number of institutionalized people with intellectual disability in a 1987 settlement.50
The lessons here are useful for institution and prison abolitionists and reformers. While expanding and investing in carceral spaces (“just for right now,” “until alternatives emerge,” “for their own good”), one perpetuates the system, financially and ethically. Limiting institutionalization is an important decarceration strategy, but it still legitimates confinement as just one among other seemingly equal options and as such rationalizes carcerality and neutralizes its logic.
In addition, the legal battle in some of these cases, such as Willowbrook and Pennhurst, went on for decades as the state refused to comply with the consent decrees or to close down the institution. Taylor and Searl point out that as late as 1983, more than ten years after the initial suit was filed, there were still about one thousand residents living in Willowbrook in squalid conditions.51 As can be seen from the length of time these cases were (and still are) litigated and the ways they were (not) implemented, they were not necessarily a successful decarceration strategy.
Willowbrook is an exemplary case as, I argue, it represents the inherent problem of trying to achieve abolition through reformist means. Those who pursued the suit (particularly the activist lawyers) wanted nothing short of a revolution in the way mental disability was perceived and treated, socially and medically. They wanted to achieve a total shift from institutional to community care, while the department of mental health subscribed to what I discuss later in the book as a continuum approach, by which institutions will be used alongside community placement and group homes. Thus, as Rothman and Rothman showed, the Willowbrook legal decree was full of contradictions, asking for huge financial investments to be made in the institution at present by reforming it but requiring its closure in the near future.52 In other words, much like with the strategy of exposés, these suits and especially their consent decrees often ended in reform measures, which enabled new facilities to be erected, new technologies of governance to be used, and further legitimated the logic of institutionalization. They did, however, also have other important effects like mobilization and politicization, which are discussed in chapter 7.
Financial Factors Leading to Deinstitutionalization
Cost-cutting measures, austerity, or what became known later as neoliberalism is one of the major contributors to the eventual closure of psych hospitals and institutions. The cornerstone of neoliberalism is privatization and austerity measures or budget cutting, especially to social services provided by the state, which go against centralized state spending on large institutions. As a result, the push to close down state institutions came as an attempt to cut down public expenditures on social services more generally. Of course, this same move would also make services in the community and affordable housing scarcer than ever. With deinstitutionalization come measurable savings—this was the main idea pushing for closures based on cost-effective calculations, which are the epitome of neoliberal thinking. But is it cost-effective, even through the lens of neoliberal calculations? This is also where we can see the gray line between closure, reform, and abolition. As we shall see, even while (some) carceral spaces closed, the discourse and the budgets still went toward a costly institutional and segregationist agenda.
These fiscal decisions conveyed the rising costs of care within congregate settings. The increase in costs came as a result of legislation and court litigation that mandated institutions to increase their quality of care and service and thus made them more expensive. In addition, many of the institutions were already dilapidated at the time the ideology of community living was taking hold, and there was little sense to spend more money on bringing them up to par with current codes and standards. Once the process of releasing people from institutions and hospitals was underway, the rising costs per person in these institutions made politicians think about closure of these money pits.
In the 1980s, and in some states to this day, the spending on mental health has only increased post deinstitutionalization, and most of the budget still went to psychiatric centers and hospitals.53 This was due to the lingering hold of institutional and segregation-based ideologies but also due to the inherent institutional policy bias described earlier. Even when these carceral enclosures close down, the budgets of each institution do not go directly into community services. Monies that used to be utilized for the care of people with disabilities either disappear from the budget altogether or go to the upkeep of institutions even when the number of residents is very small. In the 1970s and 1980s (and in some states to this day), traditional institutional facilities receive the bulk of the mental health budget, even while the institutionalized population has shrunk significantly over the years.54 In addition, as mad activists point out, even when the budget of mental health does not go directly into institutionalization, it still goes into expanding biopsychiatry and medical intervention, which often intersect with surveillance and punishment, especially for racialized and low-income populations. This contributes to what I call carceral sanism, which are forms of carcerality that contribute to the oppression of mad or “mentally ill” populations under the guise of treatment.
Although institutional bias in budgets was prevalent in both mental health and I/DD, the sum of the budgets themselves did differ significantly between the two forms (I/DD and psych) of deinstitutionalization over the years. Until the 1970s, mental health budgets overshadowed those for I/DD services significantly—in 1955, during which psych hospitalization peaked, the mental health population was four times more than the I/DD population. But by the early 1980s, the budgets had equalized. Not all the money went to community services, especially in the 1970s and 1980s; much money was spent on reforming institutions for people with I/DD, and that is still the case today in many states. However, spending for community services since the 1980s has been significantly higher for those labeled as I/DD than for those with psych disabilities.55
Why did state and federal budgets go to congregate carceral facilities even during and after efforts to deinstitutionalize? The short answer is reform. There was (and is) interest in upgrading the old facilities, which have closed down or were underutilized. Many states had included in their mission statement of deinstitutionalization the desire to improve the conditions of institutions for those who will “need them.” In the arena of mental health, these reform efforts not only raised the mental health budget overall but also decreased funds for community programs and less restrictive placements.56 Jerry Miller, who closed down juvenile prisons as Commissioner of the Massachusetts Department of Youth Services in the 1970s, remarks that while thousands of patients were left with little housing or treatment options in the community, the budgets for the depopulated hospitals actually increased at the beginning stages of deinstitutionalization in New York State and Pennsylvania.57 He sums up the situation by remarking that although most people were deinstitutionalized in past decades, the staff, resources, and budgets remained institutionalized. This idea of “institutionalized budgets” is apt and again shows that reform often leads to an expansion of carceral logics and budgets and not to their decrease.
Other than shifting budgets, there was another financial factor that led to the desire for and necessity of closing down I/DD institutions especially. Over the years, carceral institutional settings lost one of their major labor forces: the institutionalized. Superintendents and administrators had to release those labeled with mild disabilities from hospitals and institutions and thus lost their greatest pool of unpaid laborers. This trend was solidified in 1973 with a court ruling, Souder v. Brennan, prohibiting the use of unpaid labor of inmates in “non-federal hospitals, homes and institutions for the mentally retarded and mentally ill.”58 In Disability Servitude, Ruthie-Marie Beckwith shows that one of the major economic causes of accelerated deinstitutionalization was ending the practice of unpaid forced labor in these institutions. This practice, based on lawsuits and enforcing fair labor laws within disability carceral spaces, meant that the cost of maintaining institutions increased after the 1970s. I wouldn’t go as far as to state that these factors led to deinstitutionalization per se, but they accelerated a phenomenon already in place. In effect, the impetus behind these lawsuits came from self-advocates who were institutionalized and, when decarcerated, discovered that they didn’t have retirement savings, Medicare, Social Security, or back wages and sued the institutions. In that sense, deinstitutionalization was ushered by and contributed to bringing these peonage lawsuits.59
Closure of carceral enclosures based on neoliberal mandates and policies, or cost-cutting measures more broadly, poses a poignant quandary for decarceration supporters. Ronald Reagan’s policies are a case in point. Although not one to be at the forefront of the movement to promote equality and civil rights, Reagan nevertheless supported the closure of large institutions and psych hospitals, both as governor and then later as president. Population decline in psychiatric hospitals was in full swing by the 1970s, when Reagan became governor of California. This decline, coupled with his neoliberal policies, led to his infamous decision to close down all the state hospitals in California. Reagan is cited as referring to institutions and psych hospitals in California as “the biggest hotel chain in the state.”60 Although he was not ultimately successful, the vast majority were indeed shuttered.61
These tactics, although financially and politically motivated, could be construed as making inroads toward decreasing the power of psychiatry and institutionalization and therefore as empowering and favorable steps on the way to abolition of institutions and their logics. This scenario offers an important cautionary tale about closure versus abolition, however. Can we call the deinstitutionalization that resulted from such neoliberal ideologies, which show no concern for quality of life or life itself, a win? Is it abolition if the closure is done solely through neoliberal racist ideology?
The answer to these questions is not just theoretical. Many of the facility closures happened in response to state fiscal crises and the need to shift costs to the federal government as well as the desire to cut budgets for mental health treatment and any social support altogether. And Reagan was, of course, not alone in setting these priorities, as Nixon famously cut budgets for many social services, including mental health. As is clear in the prison arena, closures and decarceration measures motivated by carceral logics end up increasing the scope of the carceral state. This was certainly the case here, too. A growing industry of privately run nursing homes and board and care facilities began to emerge with the phase-out of the hospitals and in some cases gained a lobby that advocated proactively for closure in order to increase their profits, leading to the modern-day institutional and deinstitutional industrial complex.
The Great Cure: Psych Drugs and Deinstitutionalization
Last but not least, one of the most pervasive claims made in histories of deinstitutionalization and in public opinion is that the availability of psych drugs, especially Thorazine, was a major engine for deinstitutionalization of psych hospitals. It is cited in almost every study, historiography, or overview of deinstitutionalization in mental health, with some discussing it as the engine for change, and some as secondary to fiscal decisions leading to closure of psych facilities. It is used to discuss both the how and the why for deinstitutionalization in mental health. Many scholars, and laypersons, believe that deinstitutionalization happened mostly, or solely, due to the invention of psychotropic drugs, which enabled patients to leave the hospital and manage outside of an institutionalized environment. Although there is some merit to such claims, especially in relation to the perceived timing of both events, this causal relation should be questioned especially since the decline in the institutionalized population began before the wholesale use of psychotropic drugs.62
As an important side note, I want to emphasize that psychopharmaceuticals’ use in I/DD institutions was rampant, and in some cases, such as at Willowbrook, all residents were on Thorazine at some point.63 But in the hegemonic story of deinstitutionalization, psych drugs were seen as a factor only in the field of mental health and are almost never discussed in the origin story of deinstitutionalization in the field of I/DD. In other words, the use of Thorazine and other psych drugs in I/DD institutions is not perceived as leading to their closure, even though they were widely used. Therefore my following discussion mainly centers on the hegemonic story of the closure of psych hospitals and not I/DD institutions.
From the chain of events described, it is clear that there were many reasons for psych facilities to close (and be replaced by other mechanisms for treatment and control), including exposés, lawsuits, policy changes, and the ideological push from scholars and activists under the umbrella of antipsychiatry, discussed in detail in the next chapter. But why has the advent of psychopharmacology been suggested as a forerunner of such complex processes and ideologies? Some suggest that the story of the efficacy of psych drugs was needed to justify the closure of psych hospitals or to accelerate reform in psych facilities that was already on the way.64 Johnson goes further to suggest that this origin story was carefully constructed and maintained by the drug companies that invented and patented these drugs, although their efficacy remained contested.65
In contrast to popular opinion, the drugs, especially Thorazine, were not seen as a panacea, not just by those psychiatrized but by psychiatry itself. Johnson constructs a careful genealogy of the marketing of Thorazine in the United States, based on the work of Judith Swazey, who detailed its “discovery” and ascendance in psychiatric practice.66 As they show, Thorazine was initially suspect in the United States, and drug companies had to be persuaded to take it up from the French pharmaceutical company that owned the patent for it. Once Smith, Kline, and French decided to take on the drug, they discovered that most office psychiatrists were resistant to prescribing drugs to their patients and that mental hospitals that could have used the drugs were reluctant because their use would entail increases to budgets that were already strained due to overcrowding. As a result, starting in 1954, the company began to lobby state legislators on behalf of mental hospitals to increase their budgets, especially for drug treatments. Smith, Kline, and French created a “Thorazine task force,” which included hiring sales reps who would be housed in almost every major psychiatric hospital in the country. In addition, they created research briefs that demonstrated the lower overall cost of custodial care with Thorazine compared to staff turnover and maintenance of infrastructure without the drug. In essence, they tried to sell it to legislators as a cost-effective measure of institutionalization (not deinstitutionalization).
Following three clinical trials that showed favorable outcomes with use of the drug, Smith, Kline, and French saw a spike in uptake of the drug, which went to 2 million consumers in a short eight-month period. The studies in question were questionable by today’s standards, but as some have proposed, they were shoddy even for the 1950s. Some even go as far as to attribute current research protocols for drug trials to the fast introduction of Thorazine, a drug that was tested on a few hundred people without any understanding of long-term effects and was then given to people en masse—people who, I might add, had very little ability to refuse it, as it was given mostly in institutional settings.
But not everyone swallowed the pill. There were opponents to this “psychiatrization from within” from the get-go. Some opposition came from surprising places. In their 1961 report, the Joint Commission on Mental Health commented on the use of psychotropic drugs. They did not mince words by stating that the use of drugs in psychiatric institutions is “the greatest blow for patient freedom, in terms of nonrestraint, since Pinel struck off the chains of the lunatics in the Paris asylums 168 years ago.”67 Mad activists seem to agree with this assessment. The late antipsychiatry activist Judie Chamberlain discussed Thorazine as a chemical straitjacket, and contemporary mad activist Erick Fabris contends that the introduction, and enforcement, of psychiatric drugs acted as a form of literal (not figurative) chemical incarceration that enabled populations that were deemed dangerous to live outside of an institution. These forms of chemical incarceration do not signal the liberation of the mad but their increased surveillance by other means—what I have termed carceral sanism.
As noted in the 1961 report, as well as other studies and reports of those psychiatrized, the most visible outcome of using these drugs is that they make patients quieter and easier to manage, especially in larger wards with their intense noise levels. Unfortunately, this was seen as proof of their overall efficacy and has served as justification for their use in hospitals to this day. In other words, as Johnson explains, if Thorazine was useful for anything, in the eyes of psychiatry, it was because it made people more amenable to other forms of therapy—made them quieter, more introspective, open to talk or group therapy. But then, “other forms of therapy” was the part cut out of the equation, and the drugs were soon seen as a form of treatment on their own.
In regard to the hegemonic story of deinstitutionalization in mental health, it is also interesting that these drugs were seen as effective and successful solely because people assumed they were a major cause of deinstitutionalization. So, the tautological argument goes, thousands of people were able to leave psychiatric hospitals beginning in the 1950s; this was because of psychiatric drugs; hence the drugs must be effective in treating mental illness. Of course, each part of this axiom has been disputed by psychiatric survivors and antipsychiatry activists: whether patients were leaving hospitals because they were well, because they did not feel they needed to be there in the first place, or because of budgetary and other reasons unrelated to their mental health status; whether deinstitutionalization was caused or aided by the advent of psychopharmacology and the level to which this was related to patients’ well-being; and whether there is such a thing as mental illness and to what extent it is therefore treatable by drugs or other biological interventions.
The latter point is an important one, because it helps answer the question I posed earlier: why has the advent of psychopharmacology been suggested as a forerunner to deinstitutionalization? The short answer is that this narrative of curing or even treating an entity called “mental illness” cemented this entity as taken for granted instead of a contingency arising from a specific historical discourse, as Foucault suggests.68 In other words, psych drugs fitted within the rational and scientific discourse of biopsychiatry, which saw mental illness as an illness.69 This is a factor related to deinstitutionalization that not many discuss because of just how hegemonic the conceptualization of madness as illness had become. Most studies of deinstitutionalization in mental health refer to the “mentally ill” to discuss how and why deinstitutionalization happened, without even giving pause to their construction as a category of scientific inquiry and surveillance, that is, the construction of madness as a medical category.
Therefore the advent of psych drugs is related to and an important part of the genealogy of how biopsychiatry, the transformation of madness into mental illness, became hegemonic. Post–World War II, the sentiments of national triumph were coupled with strong notions of scientific progress. This was because of advances in medical science and more specifically the successful campaign against polio in the United States during the 1950s. The National Institute of Mental Health and key psychiatrists were so confident of the prevention and cure approaches brought by new medical technologies that they were led to declare that “mental illness might be brought under control in a generation or so.”70 Psychiatry had other grandiose hopes in the 1950s, as it was hoping to become a major player intervening in and fixing all social ills—from criminality to schooling. Therefore the process of institutionalization (i.e., treatment) and deinstitutionalization (via the narrative of madness and mental illness and the “discovery” of psych drugs) can be traced genealogically to the idea of scientific progress and reform.
This discourse of scientific progress should be a part not only of the genealogy of deinstitutionalization, as I have suggested here, but also of the difference between the discourses of mental illness and I/DD with which I began the chapter. As Bagnall and Eyal contend, the difference in the perception of the two forms of deinstitutionalization was due to different framings of social worth, in which those labeled with I/DD were seen as “forever children” and in need of guardianship, protection, and education, while those with labels of mental illness were constructed as “autonomous citizens.”71 Because mental illness was perceived as an illness and postwar sentiments believed in cure, people with psych labels were seen as self-reliant individuals who were only temporarily in need of assistance. Therefore deinstitutionalization could be justified (even though, as suggested earlier, deinstitutionalization as a concept only emerged after psych facilities began their decline).
If people can be treated, even if not fully cured, for their “mental illness” via drugs and other therapies in a noninstitutional setting, there is no need for prolonged hospitalization. Despite this liberatory potential, this idea cemented further the power of biopsychiatry and brought forth even more psychiatric interventions into the lives of those diagnosed as “mentally ill” and those not so diagnosed.72 The other consequence of the hegemony of biopsychiatry is the hierarchy of disability it created. For psychiatry to become a legitimate profession, let alone a science, a separation was created between those who can be treated (the “mentally ill”) and those labeled as incurable (feebleminded and then intellectually disabled).73 Another way to put this in context is that part of the easy acceptance of the hegemonic story of psychopharmaceuticals leading to deinstitutionalization is the underlying presumption that some form of social control of disability and abnormality is necessary. The so-called success of drug treatment validates this story. But the rationale and taken for grantedness of biopsychiatry are contested by those psychiatrized and those in the arena of antipsychiatry, who also pushed for deinstitutionalization, but through other, subjugated knowledges, which are the topic of the next chapter.
Deinstitutionalization Outcomes: Mental Health and I/DD
Deinstitutionalization in I/DD is generally perceived to be more successful and had seen less backlash than deinstitutionalization in the field of mental health. Some of the differences are due to the public’s perception of mental illness versus I/DD. In the hegemonic discourse, “mental illness” is seen as analogous to danger—for example, in connection with mass shooters or mad Muslim terrorists74—and therefore containment and segregation are legitimized, as those labeled as “mentally ill” are seen as posing “a danger to themselves or others.” These claims are entirely unfounded and have been rebuked by scholars and mad activists, but they still form the basis of current commitment laws and prevailing media narratives, creating moral panics around the figure of the mentally ill as dangerous, especially through a racialized and gendered prism: as a lone bad apple, the mentally ill is a white man; as inherently depraved due to group association or background, the terrorist is sick and nonnormative, and also male—what Puar characterized as inherently queer.75
In contrast, the image of the “mentally retarded” is of the eternally innocent, in need of understanding, compassion, education, and specialized treatment. In essence, the person with intellectual disabilities is seen as an eternal child having “special needs.” In terms of social treatment, this leads to paternal and infantilizing attitudes as well as the denial of agency. This could result in loss of reproductive rights, voting rights, freedom, and legitimation of segregation and incarceration in the name of treatment; the innocent is only dangerous to himself or herself and therefore requires care. Connecting the ethics and politics of custody of those whose incarceration is legitimated by “care” versus “punishment” is one goal of this book. Many disabled people experience both discourses at the same time, as I discuss through the prism of criminal pathologization throughout the book, but the distinction between danger and infantilization did help in crafting a different narrative and outcome for deinstitutionalization in I/DD versus mental health.
The timing for each process of institutional closure was also quite distinct. Deinstitutionalization in the field of developmental disabilities occurred about twelve years after the deinstitutionalization of psych hospitals, and the rate of reduction of use of these facilities was also significantly different. In the first ten years of deinstitutionalization for institutions for those labeled as MR, the institutionalized population was reduced by 30 percent and then averaged about 11 percent a year during the 1970s. At its height between 1955 and 1965, deinstitutionalization in psychiatric hospitals reduced the inmate population by 15 percent only.76
Because deinstitutionalization in mental health happened first, and because of the close ties between the policies and factors leading to both, the tactics and discourses used in each were often quite similar. This was a deliberate strategy. Deinstitutionalization activists and supporters would often use deinstitutionalization in the other field as a tool to advocate for facility closure or to advocate for different types of deinstitutionalization. Since deinstitutionalization in I/DD happened decades after deinstitutionalization in mental health, closures of psych hospitals, and often the backlash against them, were used as cautionary tales to ensure that funds actually went toward community living for those with disabilities, that plans were in place for every person who was released, and so on. In short, those in the field of I/DD translated the lessons of deinstitutionalization in mental health into desired policy and practice. But this strategy often relied on reproducing the harrowing (often exaggerated, moral panic inducing) stories of the “failure of deinstitutionalization.” Those in the mental health arena, on the other hand, would often evoke I/DD policies and imageries to push for deinstitutionalization. Since people with I/DD started to be seen as deserving of rights and protections, those advocating for antipsychiatry or closure of mental health facilities evoked the nascent developments in the field of I/DD. This was because deinstitutionalization in I/DD is seen as less controversial and people with I/DD as innocent, not dangerous, and more “deserving” of institutional reform, as we shall see in the following chapters.
Owing to the different negative perceptions of “mental illness” versus I/DD, the consequences of each form of deinstitutionalization were quite different as well. Although the phenomenon of NIMBY, not in my backyard, which I discuss in chapter 5, raised its ugly head in both arenas (I/DD and mental health, as well as other carceral spaces), there is no doubt that more often than not, those with I/DD fared better in their move into community living. Although there was often fierce resistance to the construction of group homes, for example, the resistance usually subsided (of course, this is not true in all cases). As I discuss further in chapter 5, race and white supremacy had a lot to do with the ways resistance to community living took shape. But I will only mention here that terms like innocence have connotations of whiteness, whether or not the people themselves are perceived as white, as the resistance was often toward an unknown group of people before they moved in and terms like danger have connotations of color or racialization, particularly springing out of antiblack racism (again, often related to, but not always representative of, the actual reality of who is or is not categorized as “mentally ill”).
The kind of deinstitutionalization that occurred, as a process, was also different in each arena. Admissions and discharges in I/DD facilities had been declining steadily since the 1970s, while admissions at psych hospitals fluctuated—between their peak in 1955 and complete overhaul in the 1970s, admission rates had actually doubled. In essence, deinstitutionalization in I/DD was more about the prevention of institutionalization, as Taylor and others suggest.77 This mostly related to the prevention of institutionalization of young people or children. The professional opinion changed so significantly that now one would be hard-pressed to hear a doctor order the institutionalization of someone with I/DD as an infant, never to be seen again, which was commonplace for most of the twentieth century. Bagnall and Eyal also discuss the role parents played in the push for their children’s institutionalization in the 1940s and 1950s, as part of a desire to adhere to ideals and norms of the (white) middle-class family. In the mental health arena, however, deinstitutionalization was more about transferring adults, some of whom were elderly, to other spaces of confinement and less about the prevention of institutionalization of young people.
As the largest decarceration move in U.S. history, deinstitutionalization in I/DD and mental health was a great victory for anti-institutionalization activists, for disabled people and their families, and for those pushing for a policy of inclusion as opposed to segregation and containment. In the next chapter, I offer an analysis of a factor hardly discussed in the literature about deinstitutionalization, which is the subjugated knowledges and social movements that pushed for deinstitutionalization. To be clear, I am not saying that these movements and shifting perspectives were the deciding factor leading to deinstitutionalization; I believe it is a futile battle to find the factor leading to deinstitutionalization, and I explain why by utilizing Foucault’s genealogical approach. What I want to emphasize is that these subjugated knowledges are often dismissed as by-products of other factors, or they are ignored and forgotten altogether in accounts of deinstitutionalization. As I suggested here, deinstitutionalization was a piecemeal phenomenon, one that was not even named until decades after it happened. It came from many directions at once, many of which cannot be replicated. But there are important lessons in the genealogy of deinstitutionalization, for example, the ways exposés and litigation created public outrage and awareness of the horrors of disability-based confinement but did not ultimately lead to decarceration as an abolitionary practice, or the ways alternatives such as psychopharmacology are hailed as a panacea leading to deinstitutionalization when such interventions were actually initially marketed to increase institutionalization. As part of a critical genealogy of deinstitutionalization as a piecemeal phenomenon coming from multiple directions, I focus in the chapter that follows on the pendulum between the push for reforming carceral institutional spaces and the desire to abolish them, that is, deinstitutionalization as a process that happened versus deinstitutionalization as a movement toward the abolition of disability-based segregation.