Sex Disabil (2008) 26:83–103 DOI 10.1007/s11195-008-9072-1 ORIGINAL PAPER
Sex and Gender in an American State School (1951–1987): The Willowbrook Class Helen Starogiannis Æ Darryl B. Hill
Published online: 20 February 2008 Springer Science+Business Media, LLC 2008
Abstract Historical studies have explored the regulations and restrictions in institutions. It was the belief that males and females were sex-segregated in institutions in order to control and prohibit any sexual relations and to enforce societal gender norms. This study tested this hypothesis with the Willowbrook State School as a case study. We searched the Willowbrook State School News Clippings Collection, the New York Times archives, the archives of the Staten Island Advance, various movies and television shows, and other published material for evidence of the regulation of gender and sexuality at the school. In addition, eight former employees were interviewed for their oral histories of life at Willowbrook. While historians have proposed that institutions like Willowbrook served to regulate and control gender and sexuality, Willowbrook failed at doing both. Although segregation of the sexes in modern institutions decreased heterosexual encounters, in the postmodern Willowbrook institution, homo- and autosexuality were both prevalent. Moreover, sex between patients, between patients and staff or community members, was widely acknowledged. While the institution tried to enforce gender norms, in one case as a cure for developmental delay, the residents at the school were dehumanized beyond any societal rules such as gender. Keywords State school Mental retardation Sexuality Disability Gender Willowbrook
Introduction Historians have observed such that any form of ‘‘deviance’’ from societal norms was considered an ‘‘otherness’’ to be controlled. For instance, Western societies during the 16th and 17th century relied on enormous houses of confinement, often called ‘‘hospitals,’’ imprisoning the ‘‘mad’’ and ‘‘feeble.’’ Foucault described Hoˆpital Ge´ne´ral in France as a way to H. Starogiannis D. B. Hill (&) Department of Psychology, College of Staten Island, City University of New York, 2800 Victory Blvd., Staten Island, NY 10314, USA e-mail:
[email protected]
123
84
Sex Disabil (2008) 26:83–103
protect society from, and not cure, its inmates [1]: ‘‘…these houses had no medical vocation; one was not admitted in order to receive treatment; one was taken in because one could no longer cope with life or because one was no longer fit to belong to society’’ (p. 68) [2]. Sexual ‘‘deviance’’ especially was often met with incarceration in such institutions [2]. Passion was ‘‘nothing but a chance for madness to penetrate the world of reason’’ (p. 890) [3]. As ‘‘idiots and imbeciles’’ were removed from the community, they were segregated by gender to try to control sexual pleasure, a further insult to the world of reason. ‘‘Idiocy’’ became linked to excessive sexual behavior by the 19th century as excessive masturbation was believed to cause ‘‘feeblemindedness.’’ A turn of the century sexologist—KrafftEbing—considered any sexual activity unrelated to procreation as a perversion and sign of illness [4]. Those who were caught were given punishments ranging from the horrific to benign: ‘‘Cures included penile rings with spikes, cutting the nerves to the penis, electric shock, and bland foods such as the new corn flakes developed by Dr. Kellogg for his patients’’ (p. 2) [5]. By the late 18th and early 19th century, doctors became the arbiters of what was normal sexual behavior and what was deviant [6]. Toward the end of the 19th century and well into the 20th century, masturbation and sexual pleasure were viewed as a problem among ‘‘mental defectives.’’ So doctors relied on sterilization to control the potency of inmates’ sexual activities. For example, in the United States, from 1907 to 1958, 30 states sterilized over 30,000 mentally handicapped people, two-thirds of which were women [5]. Dr. Martin Barr, in 1905, remarked, upon observing sterilized boys: There was marked mental and physical improvement, the children growing stout, and acquiring large frames. There was no hair on the pubes or face, and the cheeks became round and prominent; indeed, they resemble large women. The singing voice in one case was also greatly improved (p. 119) [5]. Gender was also implicated in this search for control, this quest to protect the world of reason from otherness. One thing is widely accepted: women were disproportionately targeted. Women were often locked up in madhouses by their husbands in the 16th century, and by the 17th century, prostitutes, pregnant women, and poor women were common sights in France’s first mental asylum [7]. It was almost always women who were lobotomized [8]. Physicians even directly attributed their psychological problems to their ‘‘femaleness.’’ In order to treat these psychological problems, doctors believed that altering the mechanics of a woman’s body would be the best cure. For physicians, ‘‘a woman’s mind, compared to a man’s, was more dependent on the body and hence more receptive to a therapeutic discipline that aimed at eradicating the source of diseased behaviors’’ (p. 152) [8]. Moreover, as Braslow noted, if a woman misbehaved or showed any form of improper female conduct, such as using profanity or masturbating, they were considered a ‘‘bad girl’’ and treated with clitorectomies [7, 8]. In contrast, physicians never saw masturbation or any form of sexual activity among men as a cause for surgery, never reprimanded boys as ‘‘bad boys,’’ even for the same acts. Men ‘‘never lost their penises or testicles as a cure for these activities’’ (p. 168) [8]. Many men were ‘‘disturbed,’’ but they were not seen as ‘‘neurotic or treated by psychiatric incarceration’’ (p. 38) [7] like women were. Doctors never spoke of men violating their gender role or turning them into ‘‘good boys.’’ Yet, there were two ways that masculinity was implicated in mental illness. Many disorders, like antisocial personality disorder, seem to be extreme versions of masculine stereotypes, in this case, the ‘‘thug.’’ Moreover, masculinity is implicated in mental illness when doctors came to associate mental retardation with a lack of masculine hormones.
123
Sex Disabil (2008) 26:83–103
85
Very simply, failure to conform to society’s expectations for gender was seen as a sign of mental illness. If a woman failed at nurturing her children and taking care of her husband, a violation of gender roles, her family often sent her to a hospital because they were showing signs of dementia [8]. The same was true of sexual behavior: ‘‘As time has shown, across the centuries, if you veer away from social expectations for sex and gender, you’re mentally ill’’ (p. 23) [9]. After treatment, with her femininity restored, ‘‘if she could cook, clean, care for the children, and provide sex, her recovery was considered complete’’ (p. 162) [8]. Conversely, one of the first treatments for hysteria and neurasthenia around the turn of the 20th century was masturbation, often assisted by the doctors themselves. These circumstances appear to have continued at least into the mid-20th century. Gittins’ study of Severalls Hospital, an institution attended by both men and women, recounted a similar pattern [10]. The female population of Severalls was greater than the male, and to be seen as cured, good, and normal was ‘‘defined by the ideals of womanhood laid down by psychiatrists and administrators and as observed and noted by nurses’’ (p. 128) [10]. Gender was also implicated in the operations of Severalls: not only did the hospital segregate the men and women, but the female side was governed by the ideas of Victorian families with needle rooms and laundries, while the male side was ruled by a military model and men engaged in activities like football, cricket and worked as coal stokers, bookmakers, and worked on the farms and gardens. Even by the 1960s, the era of the sexual revolution, patients at Severalls could meet and mix in social situations; however, sexual relations were restricted, largely due to fears of pregnancy. The wards became sex-segregated, even for staff, except during mealtime, and each side had its own routine and culture. Yet, sex happened at Severalls: ‘‘Nurses were dismissed for sleeping with another nurse. One was dismissed for sleeping with a patient’’ (p. 155), in addition to masturbation and same-sex relationships [10]. So Foucault was probably correct about the regulation of gender and sexuality by medical and psychiatric institutions in the pre-modern and modern periods, but not in the late modern or postmodern period. Responsibility for care for disabled people in the medieval period fell to ecclesiastical-based services, but gradually cities and states took over medical services, largely because centralized services were more economical [11]. The treatment of mentally disabled people once fit within an overall narrative of American progress, of gradual and great achievements in American medicine, full of promise and salvation, as care became gradually institutionalized and centralized into large hospitals [12]. Shortly after the 1950s, however, these medical factories were beginning to show cracks. Twentieth century modernism brought the promises of modern scientific medicine, and the bureaucracy to deliver it, and this led the modern hospital, large and efficient, but also bureaucratic and dehumanizing, as the responsibility for care shifted from our families and leaders of faith to large institutions filled with strangers [13]. Indeed, the economies of scale meant larger institutions were needed to deal efficiently with the always overwhelming need for health care, becoming in some cases based on the ‘‘village idea,’’ a large self-contained institution [14]. The modern designs seeking supervision, control, and efficiency, however, if taken to their extremes could threaten privacy, individualization, and sanitation or hygiene [15]. Some philosophers argue that the 1960s marked a shift into the postmodern period, a period in which modern institutions were pressed to their logical extreme. Moreover, postmoderns took an ironical stance with the promises of modernity, as events surpassed the simple promises of the modern project. Modernity, observed many, was at the heart of some of the most heinous human action in the 20th century, and modern scientific medicine revealed its weaknesses and tragedies. In this particular instance, rather than
123
86
Sex Disabil (2008) 26:83–103
observing the modern rules of humanity, a large medical and psychiatric institution became an instrument of containment not regulation, dehumanization and anarchy: Willowbrook State School represented many of the failures of modernity.
Willowbrook State School In 1938, the New York State Legislature approved over 5 million dollars to purchase land in Willowbrook Park in the north center of Staten Island, New York, for a new hospital. By 1941, the hospital was completed just in time to serve returning World War II veterans. In 1951, the hospital was established as the Willowbrook State School for people suffering from mental disabilities. The ‘‘Willowbrook Class’’ as they were to become called, consisted mostly of children and adolescents (but some adults as well), perhaps the largest proportion of profoundly retarded children of any New York institution in the day, and certainly the highest proportion of African-American and Puerto Rican patients in the state [16]. This made some sense: the federal government would not provide funds to families to help them with their children at home, so children from all over the New York area were sent to Willowbrook if the family was otherwise unable to provide for them. Within 4 years of the institution opening, it had a capacity of 2,950 patients, but housed approximately 3,600 residents. By 1963, 6,000 residents were housed in spaces for 4,275. The school was huge, definitely based on what designers called ‘‘the village idea’’: over 30 buildings on well over 200 acres of land surrounded by forest. Willowbrook was not a functional place for rehabilitation, but a place for abandoned children with disabilities. Just like the women in the 17th century sent to institutions because they did not follow society’s standards, parents and the courts sent children to Willowbrook who looked or acted differently. Many of the children were cognitively or physically disabled, but clearly many were not. In an interview conducted by Fusillo, an educator who worked at Willowbrook said: If you knew someone who would alter the tests results for you, you could get your child admitted to Willowbrook. Doctors and judges would alter IQ scores in order to make a child eligible for admittance. Some children were literally dumped at the doors of Willowbrook. There was a story about a boy who was blind. His father drove up to the grounds in a Cadillac and just let him out of the car with a note saying, ‘Never want to see the kid again, do not notify in case of death.’ (p. 42) [17] From the very start, there were signs that things were not right. As early as 1952, there was a report in the New York Times about an attendant at Willowbrook, a past inmate of another state hospital with a police record, arrested for beating two residents at Willowbrook [18]. By August 1965, doctors who worked at the school had alerted the Staten Island Advance, the local paper, and the initial expose´ reported that conditions at Willowbrook were appalling. A month later, Senator Robert F. Kennedy made an unannounced visit to Willowbrook. In a statement on television and print news, Kennedy described children wearing rags, surrounded by filth, in overcrowded wards, with inadequate medical care or supervision [19]. To respond to increasing public scrutiny and address parents’ concerns about their children, in December 1967 the director sent out letters to the parents of 5,395 patients [20]. The letter specified whether or not the parents wanted to discuss the patient’s program and progress, and whether the parents wanted to take their child home to live. Out of the 5,400 inquiries, only 749 parents replied. Of the parents who responded, only 552 were
123
Sex Disabil (2008) 26:83–103
87
willing to discuss their child’s progress, and only 77 were willing to consider taking them out of Willowbrook. Of the 283 families who placed their infants at the institution, ‘‘98 of them…expresses interest in talking about their infant’s progress, but only four of them were willing to consider caring for the infant at home’’ (p. 339) [20]. The parents were caught in a bind: even though conditions at the school were becoming infamously poor, they didn’t have the resources to help their children. After Senator Kennedy’s speech about Willowbrook, the press started to direct attention to Willowbrook. In December, 1965, a 6-year-old boy died of malnutrition due to negligence [21]. Other articles observed shocking deaths by asphyxiation and wildly overcrowded wards [22]. In August of 1965, four deaths were being investigated, one as a homicide [23]. By the early 1970s, reports had been published about high rates of death due to asphyxiation [24] and an instance where two female ward attendants were arrested for the beating of ‘‘three boy patients with a broomstick’’ (p. 44) [25]. The Willowbrook story was about to break and it was Geraldo Rivera who gave the story its strongest profile. Drs. Wilkins and Bronston, members of the Willowbrook staff, called Mr. Rivera when Wilkins and Elizabeth Lee, a social worker, were fired for urging the parents of the patients at Willowbrook to collaborate and demand improvements of the conditions for their children. When Rivera and his crew went unannounced to Willowbrook, they couldn’t believe their eyes, and their cameras recorded it all. Children were sitting on the floor, some nude covered in feces, rocking back and forth making pitiful sounds. Willowbrook was a state school, yet there was very little education happening. This was simply a dumping ground for the city’s unwanted children. The staff, overwhelmed and under-supervised, resorted to prison-style control tactics: disruptive residents were confined in solitary ‘‘pits’’ and left for hours or were beaten with keys and sticks [17]. The above story would be enough to generate interest in Willowbrook, but it is also notorious for some of the more egregious violations of patient rights, now widely recognized as part of the motivation to implement nation-wide controls on medical research. In a classic ‘‘modern-medical-science-gone-wrong’’ story, during the 1950s and 1960s, healthy residents, mostly children, were infected with hepatitis and rubella viruses [16]. Between 1953 and 1957, Willowbrook documented 350 cases of hepatitis among the residents, and because staff poorly understood the risks, 76 staff contracted hepatitis as well. Parents were told that if they wanted their child to be admitted to Willowbrook, and skip the long waiting list, they would have to consent to these medical experiments [17]. Even as late as 1974, doctors were enlisting children in medical vaccination experiments: 34 children were infected with shigellosis virus, and then vaccinated ineffectively [26]. Obviously, the above stories about Willowbrook are the central concerns of those in disability studies more generally. The residents at Willowbrook were vulnerable, stigmatized and discriminated against, exposed to horrific risks and threats, dehumanized on a daily basis. So why do research on something so seemingly trivial as gender and sexuality of the residents? Surely, these questions pale in significance compared to whether the institution provided for their basic needs such as clothing, safety, and physical and mental health. But to feel a part of society, youth needed to be socialized into social roles. It may be that an ideal society would not have such strict gender roles as ours, but they are presumed basic to our society and sexual experience. Moreover, sexuality is at the core of what it means to be human; and even more so, for intimacy. To feel loved and accepted, to feel the warmth of another person’s caring, to connect with another intimately, these are all vital human experiences and essential to human growth. Researchers have just begun in earnest to address the issue of sexuality among disabled people. This research is in its infancy, and there is very little known about the sexual experiences of people with
123
88
Sex Disabil (2008) 26:83–103
disabilities. Studies of the sexual experiences of people held in institutions like Willowbrook will help us understand how sexuality was understood in the past and how it should be addressed in the future.
Sexuality and Disability Clearly we are just beginning to get a sense of the issues facing disabled persons when it comes to sex. Either disabled people are viewed as ‘‘malignantly sexual’’ (p. 3) or asexual seniors [27]. Many non-disabled individuals may be uncomfortable considering their disabled relations engaging in sex: family members and service care providers often perceive physically and mentally disabled individuals as having the mind of child, and therefore incapable of making sexual choices on their own. Thus, ‘‘Disabled populations are not viewed as acceptable candidates for reproduction or even capable of sex for pleasure’’ (p. 285) [6]. Often they are denied the capacity for sexual feelings, relations, or experiences. Yet those who advocate for the normalization of mentally and physically challenged people believe that they should have the right to be educated about, and experience, sexuality, love, and intimacy [28]. Specifically, researchers have suggested that being disabled has an impact on sexual esteem. Sexual esteem is ‘‘positive regard for and confidence in an individual’s capacity to experience his or her sexuality in a satisfying and enjoyable way’’ (p. 131) [29]. Since many able-bodied people do not think people with disabilities have sexual desires, sexual esteem is often threatened. In addition to being perceived as asexual, Taleporos and McCabe reported that individuals with physical disabilities face practical barriers such as inaccessible meeting places or an inability to simply meet potential sexual partners [29]. For those in institutional environments, dependence on others also restricts opportunities to express their sexuality due to lack of privacy or over-protection from care takers. It is easy to see how things must have been difficult for people with disabilities to express and satisfy their sexual desires. Many women might believe that men and/or women do not want them if they are disabled, perhaps even that they can not compete with able-bodied women. Some women feel that their impairments damaged them from womanhood and that their future held no possibility of being a mother or wife or partner. Some men with disabilities feel that their masculinity is threatened, that they are weak and can not perform the tasks that able-bodied men can. They may feel that women do not see them as boyfriend material because they are perceived as unthreatening and asexual. Public health institutions for mentally and physically disabled people often avoided sexuality, and certainly would not provide sexual education because it ‘‘may encourage people to become sexually active, which is seen as a dangerous development’’ (p. 24) [27]. Many people think that individuals with physical disabilities need protection and are not capable of handling rejections or sexual relationships [30]. A survey of individuals with physical disabilities confirmed this and other findings: individuals with severe physical disabilities were less likely to have a partner [29]. Even though some individuals may feel that their disability interfered with their ability to find partners or even please them, others felt that their disability made them more creative. If they live in institutions segregated by sex, then they sought same-sex relationships. Expression of sexuality among people with mental disability, however, is similar, but different. Both suffer from a lack of opportunity, and if that can be overcome, both may be vulnerable to STDs and pregnancies [31]. For the residents of Willowbrook, the ground
123
Sex Disabil (2008) 26:83–103
89
zero of a hepatitis study, surely none felt that kissing or sexual contact might lead to a lifethreatening incurable disease. Then, there is the issue of consent: if a person has profoundly limited cognitive abilities, they may not be able to consent to sexual behavior. Indeed, the law pertinent to Willowbrook was that no one institutionalized because of mental or physical disability can consent to sexual activity. Next is the problem that even if mentally disabled people can consent, they may be vulnerable and more at risk for sexual victimization. This may be especially so because they are likely to be institutionalized [32], and institutionalized children are more likely than their non-disabled counterparts to be sexually abused [33]. Of course, the issue becomes even more complicated when considering sex among residents of institutions. Staff might minimize such encounters. For example, ‘‘men who had sex together were just going through a phase, they need to meet a nice woman’’ (p. 15) and when two women were caught, staff referred to these women as ‘‘being good friends who spend time together and sometimes held hands’’ (p. 16) [34]. Of course, contemporary approaches are far more sophisticated. For example, one suggestion is that an assessment of capacity to consent to sexual activity can be made; although complex, can be primarily based on assessments of a person’s rationality, knowledge, and ability to consent [35].
The Present Study The Willowbrook State School represented perhaps the most extreme example of a medical and psychiatric facility in the postmodern condition. This dehumanizing institution failed to deliver even the basics of a modern society: safety, companionship, gender, intimacy. Even though residents were segregated by gender (in most buildings), Willowbrook was unable to regulate sexual relations. In this exposition on the questions of gender and sexuality regulation in a postmodern American State School, we started with two theses. First, although there were early efforts to socialize Willowbrook residents into the rules of gender, they were eventually dehumanized beyond gender. Second, segregation of the sexes did little to control the sexual experience of the residents.
Method This study began with an extensive search of various archives. It relied on the clipping files of the College of Staten Island Willowbrook State School Documentation Project. Consisting of approximately three cubic feet of material in six small file boxes, the Willowbrook Documentation Project consists mostly of the ‘‘publicity’’ scrapbook kept by Robert Witkowsky, former director of the Staten Island Developmental Disabilities Service Office. In this report, we’ll refer directly to the original source of the item, if available, but if not, we’ll identify the location in the archive. We also searched the computer-based complete archives of the New York Times. The library at the Staten Island Advance, the local newspaper, also shared their extensive clipping file of several 1,000 articles on Willowbrook. We also reviewed any available unpublished and published works on Willowbrook. Dr. William Bronston, one of the oral history contributors (who waived his right to confidentiality) also contributed a large photographic essay of pictures of Willowbrook taken by staff members. The archival study was supplemented with an oral history study among past employees of Willowbrook. Using word of mouth, the Internet, public directories, and published
123
90
Sex Disabil (2008) 26:83–103
documents, eight former employees of Willowbrook volunteered to reflect on their memories working at the school. The narrators for this study were both men and women; their occupations were nursing, education, administration, occupational therapy, and medicine. They were interviewed on the telephone for about an hour on their memories of what life was like for the boys and girls at the school. Special attention was paid to the romantic and sexual lives of the residents. The interviews were then transcribed and examined for relevant information.
Results Regulating Gender at Willowbrook Appearing 4 years after the opening, one of the earliest accounts of Willowbrook in the press was a 1955 Daily News article that praised the school and its hard work. The headline was Miracle of the ‘‘Secret Children’’ with the subtitle: Living Dead Find Life at S.I. School [36]. Willowbrook was praised for bringing life into the lives of the ‘‘secret children.’’ It was largely a ‘‘puff piece’’ that showed how the youth were given opportunities for academic and vocational training. The children with moderate mental retardation were assigned to different activities, including academic classes (yearly articles would attest to a ‘‘graduating class’’), while the children with mild mental retardation were taught to prepare bread and cakes in the school’s bakery, mend shoes, and help in the carpenter’s shop and with gardening. Girls were taught social sciences and learned to cook and sew and other domestic skills; boys were taught skills like carpentry, shoe repair, and upholstering furniture [37]. The article mentioned that for some of the children, a job, under supervision, awaited them in the outside community. This article was typical of the pieces in the Willowbrook Documentation Project, the files filled with positive headlines, each praising Willowbrook’s project of improving the lives of residents. They picture residents visiting the community, enjoying Vince Lombardi’s band (composed of residents), enjoying clowns, riding the carousel, or having parties sponsored by various charities on the Willowbrook campus. A Staten Island Advance article in 1957 praised Willowbrook. The headline was State School Patients to Exhibit Work. [38] The article explained that the occupational therapy department exhibited rugs and ceramics made by the residents. In March 1964, the Staten Island Advance again put Willowbrook on a pedestal with the headline Full Potential of Patients is Goal of School’s Program [39]. It described ‘‘older girls attend[ing] a homemaking class in which they are taught domestic work, including washing, cleaning, cooking…and other chores’’ (p. 29). Clearly, at least in the early years, socializing these youth into gender roles was considered occupational therapy. It was not surprising that the activities required by the residents at Willowbrook were so stereotypical. Even the ‘‘working patients’’ were assigned gendered tasks: the girls worked in the laundry, kitchen, and dining halls; the boys usually worked in the industrial shop and the heating plant. Although there were efforts by the school to gender residents, Dr. Bronston said: …People were…recruited, pretty much like slave labor…to compensate for… the staff shortages and inadequacies and lack of budget. …And so…there was …no job protection…no…worker rights…no remuneration…nothing. I mean……this was a concentration camp. People were used for a variety…of functions in order to save the
123
Sex Disabil (2008) 26:83–103
91
institution money…to hypercritically …engage them in constructive work…in constructive activities… So gender was really beside the point. Still, he admitted that the labor was gendered somewhat: …Girls…were commandeered to do the mopping and cleaning and bed making and so forth…in the buildings that they lived in. All the work, all the major labor …the hard work…the dirt work was done…by…[male] residents… In an oral history interview conducted by Fusillo on August 22, 1994, a staff member stated: As a matter of fact, the former director had one of the young women—who was a high school graduate, and placed in Willowbrook because her parents found her fooling around with a boy, not because she was mentally retarded—working for him as his housekeeper. [17] When the interviewees were asked if the boys and girls were treated equally four respondents mentioned that there weren’t any gender differences, but two participants recalled that the residents were treated differently. For example, one respondent mentioned that the boys received a lot more abuse than the girls. Another respondent mentioned that the boys received better treatment than the girls: Employee: Boys were treated special because they were boys. They were more protective over the…staff, and they voiced their opinion. …Most women were scared of the boys so we…didn’t make…wave[s] with…the boys. The boys got away…with much more then the girls. Interviewer: And how were the girls treated then? E: The girls were treated fairly, but they were mostly… ‘‘Go sit down’’, and… ‘‘Stop that’’ … In other instances, the boys were treated harsher than the girls, as explained by another respondent: I: Do you think the boys and girls were treated equally by the staff? E: No. I: No? Why do you say that? E: I guess they felt that they could [use] …a stronger hand on the boys than they could on the girls. Another way in which the boys and girls differed involved ‘‘favoritism.’’ Four respondents mentioned ‘‘favorites.’’ One respondent had this to say: I can remember…there were…people who were people’s favorites. And so they would say to them… ‘‘You look pretty’’…or trying to…do their hair a little differently…to make them feel more attractive or something like that. Particularly with the little girls… This oral history participant elaborated: …We have some …young men and young ladies that [were] raised …and…become so adapted to the lifestyle… …They somewhat mimic the staff, the way the staff dress, and dance to music. And…some staff members thought that was a big…thing to take that person home and… spend time with… their family…You know some of
123
92
Sex Disabil (2008) 26:83–103
them were much more verbal, social, and be able to relate…to staff. So, they had favoritism… The children could not have any of their personal possessions. Clothes were donated by individuals and organizations. Regular articles would appear in the local papers noting which organization donated what items to Willowbrook. A few relatives would bring clothes for their children, but once the relative left the premises, the clothes were taken away from the child and locked up in a closet in order for the child to wear them again if the relative returned for another visit. Most clothes however were stolen and new ones were made from heavy material with elastic bands. As Fusillo [17] explained, the boys had no zippers on their trousers and jumpers or dresses were given to the girls, suggesting there was some attempt to gender their clothing. The material of the clothes was gray, tough and heavy. They looked like army clothes. Hats that looked like sailor caps were distributed to the boys. There were never enough shoes. Patients would either be bare foot or would wear shoes that were too small for them. But their institutional clothing was gendered: the girls wore dresses and the boys pants. Employee: …They generally wore these dresses that…had a round neck and a half a sleeve to it and it was very…like a… Interviewer: It was stiff? Like stiff material? E: …It was a kind of a hard…but…there is a name for that type of dress, …it wasn’t a hospital gown, but it was…like a shirt. …It had really no pull in at the waste or anything. It was just kind of straight. It fell straight from…their arms down… And they would wear that, and they would wear…socks… The male residents…I…remember really just wearing…cotton slacks and a…shirt. …I don’t remember…what they wore too much… But later on, as conditions deteriorated due to overcrowding, there was no dress code. Dr. Bronston was asked about the dress code for residents. He said: No dress code. There was no…that…place was not civilized and…there was no dress code whatsoever. People wore what was available…which ranged everywhere from…plumb nakedness to… institutional clothing in one sort or another to in some instances a few shreds of pieces of clothing from their families that essentially got lost…nudity… and… humiliation [was] the norm… Dr. Bronston’s photographic archive confirmed this. Sometimes when searching through the archives, the contrast in the pictures of the residents was stark: the kids pictured in the popular press were all dressed in their Sunday best at parties and doing vocational activities around the campus. Whereas the kids pictured in the Geraldo footage and by Dr. Bronson were horrifying: nude figures huddled by radiators for warmth, large common rooms with women in varying states of undress, large boys and grown men with little more than underwear or shorts to cover themselves. In fact, it seemed as if maybe clothing and even gendered clothes were out of the question for these children. Nudity was the final dehumanization. An article in the Advance in November of 1971 was one of the first to mention the nudity [40]. Several articles published in the Staten Island Advance from March to late fall 1974 mentioned the nudity at Willowbrook. One article referred to ‘‘strippers’’: residents who would refuse to wear clothing or remove their clothes when they were under duress [41]. A point-of-view piece in September of that year reported that a visitor to Willowbrook saw many residents ‘‘completely naked’’ [42]. In October of that year, a psychiatrist testified at an inquiry that
123
Sex Disabil (2008) 26:83–103
93
‘‘retarded’’ people rarely take their clothes off in stimulating environments [43]. The new director of Willowbrook claimed that the laundry facility was in disrepair, and denied rampant nudity [44]. One unexpected discovery was an undated article, from a September in the later half of the 1950s, most likely 1959, that reported on an experiment conducted with Willowbrook’s residents. Of course the hepatitis study was already underway. But a series of lesser-known studies pointed to obvious examples of gender being regulated at Willowbrook, but to 21st century eyes, in a rather chilling manner. Harold Berman, Kathryn Albert-Gasorek and Max Reiss, all doctors at Willowbrook, conducted a study using hormone treatments on ‘‘32 hospitalized mentally defective boys between 9 and 15 years of age, all showing a lack of physical development characteristic of their sex’’ (p. 1) [45]. In fact, Reiss founded and directed the neuroendocrine research unit at Willowbrook, and already had an international reputation as founder of the International Society of Psychoneuroendocrinology [46]. He had been brought to Willowbrook because of his work studying endocrine imbalances and hormone therapy. In their published report on the study, Berman and his colleagues believed mental deficiency was caused by ‘‘retarded genital development’’ (p. 106) [47]. The ‘‘retarded’’ boys were all discovered because they suffered from undescended testicles. They based their study on a 1959 report by Bullmore et al. [48]. They observed that male ‘‘retarded’’ children were often timid, showed lack of aggression, had little or no interest in sports, showed dependency towards a mother figure, and had ‘‘poor or perverted sex drives’’ (p. 106). By injecting them with chorionic gonadotrophic hormones, Bullmore and colleagues claimed interesting therapeutic results. The boys were given different dosages of the hormones varying 100 units a day to 2,000 units per day to help the inguinal canal close, but the researchers noted that facial expressions and behavior changes also occurred. The boys became social and aggressive, and were judged to be less ‘‘retarded’’ on cognitive tests and in terms of physical appearance. The before and after pictures of a young boy accompany both the scientific journal paper and newspaper article supposedly show how hormones transformed a ‘‘retarded’’ boy into a ‘‘normal’’ boy.
Sexuality at Willowbrook The first sign that sex was an issue at Willowbrook in the papers occurred in a 1955 Daily News article titled Miracle of the ‘‘Secret Children’’ [36]. At one point, the article, almost out of nowhere, described the residents as oversexed, hypersexual, and with little understanding how to relieve sexual urges. A Sunday News article in July of 1957, Who’ll Never Grow Up [49] celebrated Willowbrook, but then asked this question: ‘‘What about the sex problem in State Schools?’’ It appeared there was a sex problem endemic to state schools. The article defended Willowbrook arguing that ‘‘mentally retarded children are not oversexed’’ but as they reach puberty their appetite for sex develops. Much of the sex was between same-sex residents trying to find love, affection and comfort where they could but it was regulated by staff members: There is homosexuality among the older groups and some of the younger children. They are watched carefully and when a sex deviate is found he is separated from other patients…As they reach puberty their sex appetites develop just as do those of normal children. They cannot be permitted to mix indiscriminately with the opposite sex, but have weekly dances and parties under supervision. (p. 73) [49]
123
94
Sex Disabil (2008) 26:83–103
This is a clear view of sex at Willowbrook in the 1950s. There was homosexuality, but they were often segregated, and there were co-ed social activities so heterosexuality could be reinforced, but only under supervision. Gender separation as a method to control sex was doomed from the start. Although Willowbrook discouraged all forms of sex, same-sex relations proliferated. Separating the patients into different buildings was meant to prevent any sexual activities between them. However, segregating the patients did not necessarily mean that patients did not engage in sexual activities. They needed to feel the love, affection and warmth that most children need and receive from their parents at that age. The attendants however, withdrew this affection that was longed for and residents ‘‘found it in each other’s beds’’ (p. 29) [50]. There’s no doubt sexual expression was a form of warmth and intimacy needed by all post-pubertal residents. This was reinforced by an account of what happened when a visitor entered the common room of the ward: women patients ‘‘rushed frantically to be able to say hello, make conversation, and be hugged,’’ the article continued, ‘‘‘These people,’ an employee at the school said, ‘are in desperate need of contact’’’ [40]. Oddly, this very situation was common in these hospitals. One employee in the oral history project recalled a memory that happened at a school similar to Willowbrook. He went on a tour of this other institution, and: …When we walked…in the ward …all of a sudden everybody stepped back and they left me almost in the middle of the room. And the girls start taking their clothing off and hugging me. Some of them [were] completely naked and everybody had a big laugh about it. I was kind of embarrassed and I didn’t know what to do. He wanted to make sure we understood what was involved: ‘‘They were like in their late teens early 20s…physically well developed. And I was …if I may say so, pretty descent looking and young.’’ The staff members had a good laugh: ‘‘They knew that this was happening constantly to male visitors when they came in…They come in, and hug him, and kiss him, and rub their chest, their breasts against him…’’ He made sense of it this way: since these were young adult women, and they had limited interactions with men, ‘‘When they saw a good looking young male person, that’s what they did.’’ This story, although not at Willowbrook, represented the whole package of what was often at stake on the wards. Young adult women and men, in various stages of undress, desperate for attention and affect, filled the wards. At first when we heard this story, we doubted it. There was something that seemed too unreal about the story. Yet, there was evidence from several other sources that basically described the same scene. Perhaps most convincing was a picture, from Dr. Bronston’s photographic archive, that basically captured the same moment at Willowbrook. The camera looks out into a wide common room, a large expanse of floor, ringed by women in various states of undress, one fully nude, sitting in chairs or standing, turning toward the visitor with the camera. In the center of the picture, already at full run, is a young woman in her underwear coming to greet the visitor. A news report described an almost identical scene: ‘‘In one ward, a visitor is greeted by women patients who rushed frantically to be able to say hello, make conversation, and be hugged’’ [40]. Another report, from a volunteer who visited the children, wrote: ‘‘They tell me they love me. They hug and kiss the attendants. They are so starved for love that if they can’t get it from their own family they will get it from anyone who cares to visit them’’ [51]. There clearly was evidence of homosexual behavior at Willowbrook. A published research paper by Pustel, Sternlicht, and Deutsch not only identified ‘‘retarded male homosexuals’’ among the Willowbrook residents, but 18 matched pairs of lovers [52].
123
Sex Disabil (2008) 26:83–103
95
They argued that the feminine or passive partner of the couple projected their inner femininity in a figure drawing test. There were even accusations of a sexual relationship between Dr. Michael Wilkins and a male patient. A resident, Bernard Carabello (who was to become a vocal spokesperson for resident rights), was questioned about whether he and Dr. Wilkins had sexual relations [53]. He later claimed he made it all up [54]. But this was mainly seen as a cynical attempt to threaten Dr. Wilkins, who had publicly raised concerns about conditions at Willowbrook. As previously noted, Willowbrook held the greatest number of African-American and Puerto Rican-American individuals with mental retardation. Sometimes there was racism mixed in with sexual repulsion would they would be caught having sex. Attendants would yell, ‘‘Oh, you nasty things! Stop that right now’’ (p. 29), when there were some patients that ‘‘were screwing around behind the drapes’’ (p. 29) [50]. Those who were discrete about their actions would usually get away without being reprimanded. One past employee in the oral history project denied seeing same-sex relations; six former employees observed residents involved in same-sex relations. Dr. Bronston hesitated to call their relationships ‘‘gay’’: …The only possible way that people could in any way, experience any kind of comfort nurture or socialization was…single sex context. So the idea of gay does not have merit at all in a situation as totally perverse as was set up by the administration in terms of… gender separation and lifetime empty, deficient environment. …It was men on men, women on women, and it was a rare opportunity for coed contact except on the grounds outside of supervision. It was…the norm. The only way that anybody could get any kind of sensual comfort was with same sex partners. …The notion of gay simply…doesn’t have currency in a context like we are talking about here. You can’t bring your normal notion of somebody having a homosexual inclination and make it stick in a context where no possibility for choice or access existed. I would see…couples on the grounds…that essentially had more freedom to be able to go out on their own without necessary supervision, although you are talking about a relatively minor fraction of the people there. So …people find a way to somehow connect…and to love and to…express affection and connection with one another. I mean, the deprivation was so savage…it was just a blessing…that some people were able to in some way make connection. But it was not encouraged. It was not facilitated. It was not necessarily condoned. And it had no future. Another employee said this: I mean there were people there that lived in all male buildings and people that lived in all female buildings. Now some of them became… best friends and sometimes you [would] see same sex people kissing and…dancing together and that type of thing. I am not sure whether that…was their preference… It may not be entirely accurate to describe all these actions as homosexual, and maybe some didn’t fully understand the choice of sexual expression. Two employees said staff reacted positively to homosexuality: …Some people…who lived in the same building. They’d go over there and they… would…put their hand …caressing the person’s face or caressing the person’s leg.
123
96
Sex Disabil (2008) 26:83–103
…they’re the same sex. It didn’t bother me at all. I didn’t care about it, but I…also… wonder if they know. They must know instinctively as a human being…that’s something we do, and it’s arousal for some reason… And also I’ve seen [a resident] …when you look at him, that he was aroused. But…how that happened I don’t know. …I have seen affection towards each other…just innocent affection…like caressing…whether it be a boy or girl. Another positive reaction from another staff mentioned that although most staff thought it was disgusting and tried to stop same-sex relations, this employee had a more positive outlook: …They’d say how disgusting that was, or why don’t they prevent that? Or…. they don’t know what they’re doing anyway so you may as well just separate them cause it won’t make a difference to them. And my reaction would be ‘‘Well, that’s just a natural instinct ….You and I don’t do it cause we….are more intelligent to know you just don’t do this in the open when you’re at work. But they live here’’…Do they really know what they’re doing? I don’t think so. Same-sex contact was not accepted, but neither was heterosexual sex. Two respondents mentioned this: I remembered the male or female staff…couldn’t find Johnny, they couldn’t find Mary, and then they were… together in the room. …I guess if you are…a human being you have instincts. So they found out things to do to each other, and with each other, but I truly don’t know [whether] they understood it, so they would find them together and separate them. It’s because one of them didn’t belong in the building because it was a male or female building, but somehow got in the building. This former staff explained how staff prevented relations from occurring: ‘‘I remember once…somebody said that they used to sometime[s] in the evening…go out and practically pull the boys off the top of the girls…’’ There were patient–patient sexual incidents that occurred, but only a few were officially noticed when discipline was given. Reiss stated that a resident was caught in an incident where he and four other boys walked onto a terrace [50]. They were found the next morning sleeping together. He confessed that they were fondling each other. Since he was the oldest he took advantage of the other boys and led them into ‘‘evil ways.’’ He was the only one who received punishment in which he was transferred to another ward. The residents were also described by three interviewees as finding sexual pleasure through masturbation. The institution failed to regulate self-pleasure even though masturbation was often met with impolite comments: I know some of them had sex education because there was a few who [were] very non-verbal, low function[ing]. They were just constantly masturbating outside anyplace, anywhere. …they have the feeling. They will just do it.’’ But I remember a sex therapist was brought in to teach them to do it in the privacy of their own room, in a quiet area, not to do it constant[ly], redirecting…not to do it in public, [in an] inappropriate way. Some of them grasp[ed] it. [For] some of them, [it] didn’t make [a] dent.
123
Sex Disabil (2008) 26:83–103
97
So in this case, the staff would admonish the resident: I would not say punish…, but rudely talked to. ….Like, ‘Put that thing away,’ …‘What are you…,’ …‘Sex maniac,’ and…‘Cut it out!’… ‘Filthy!’… One interviewee spoke about many of these issues: People would hug each other. …some people would kiss. And some…would refer to people as their boyfriend or their girlfriend. They would see each other…in some of the bigger recreational events, or they lived in buildings…close to each other. If somebody would start even to masturbate…which was something you’d see sometimes with particular consumers who had less skills…you would try to…refocus them in something else. Because you are in the middle of an activity and it…wasn’t the intent of that…program. …If somebody is going to start to masturbate, I am more than likely going to stop them and say… ‘Come on…I need you to help me here. I need you to…do such and such…’ …if [it was] somebody that I could talk to differently, I’d bring them off to the side and say, ‘You know, that’s something that you do when …you’re alone…that’s a personal thing.’ …but…the problem…is that…they don’t have much personal space. Another former staff explained that the residents were punished: Interviewer: Did you ever see residents having sex? Employee: Masturbating. I: Was this mostly the boys? E: Yeah. I: And what happened after they got caught? E: Sometimes they’d be hit… The same employee told this story of a boy masturbating: So like I said, some of the kids sometimes, they…would masturbate. The…patient’s hands were probably dirty, and touched him, and the guy reacted by punching…the…patient, and wound up…I guess hitting an object, and it knocked the patient’s eye out. Even though masturbation was not accepted and many residents were punished and scolded for it, there was one respondent who mentioned that masturbation was encouraged as explained by one of the former staff: ‘‘Well they would let him finish, and then [tell him] ‘Don’t do that’ but he couldn’t understand, …with his…diagnosis and everything.’’ In this case, the respondent explained that the doctors would encourage the residents to masturbate and ejaculate, because it was considered healthier for them rather than stopping them. Even though the residences were segregated by gender, they had many opportunities to get together. For example, there were many trips and activities that both boys and girls did together as explained by this respondent who worked at Willowbrook: So there were some…co-coed types of activities going on…. The holiday parties sometimes…. …the trips sometimes would also be coed. When we take a trip maybe to the movies…at that time it was a lot of people. At one time you take…thirty six people and we go over to Brooklyn sometimes to…a movie theater over in Flatbush and they’d have lunch out and then go to the movies and then come back. …We went to…Madison Square Garden sometimes.
123
98
Sex Disabil (2008) 26:83–103
Willowbrook had dances in which the patients attended, movies in which they watched and enjoyed, and those who went to school would often meet with one another during or after class. During these occasions, the boys and girls had the opportunity to interact with one another and to feel like someone loved them. Sometimes, heterosexual contact would lead to sex and pregnancies. Reiss who worked at Willowbrook simply stated, ‘‘Every year one or two of the girls became pregnant, which was a modest number considering the size of the population’’ (p. 28) [50]. This was validated by news accounts [55]. Clearly, some of the pregnancies would be due to romantic contact between peers. Some of these contacts may not have been consensual, depending on the capacity for either to understand their actions. It seemed odd that Willowbrook would expose their residents to the risk of an outside unsupervised visit with a volunteer, but the ‘‘adopt a patient program’’ sought to match volunteers with a patient they could take home for the day [56]. An article in the Advance, written by a volunteer, described how she regularly took boys to a playground, dinner, zoo, or a trip on the ferry [51]. In some cases, the relationships between a ‘‘favorite’’ and an employee seemed inappropriate, and in some cases, escalated to assault. But many of these relationships were well-meaning and somewhat sad. One boy fell in love with an attendant who buttoned his shirt, combed his hair, and told him he was a fine boy [50]. He was devoted to the attendant. He would follow her around the ward, and when he was sitting down, he would follow her with his eyes. He would get mad when the attendant wouldn’t pay attention to him or if she was giving more time to another boy rather than spending that time on him.
Rapes and Assaults The early newspaper reports, in the mid-1960s, were beginning to track crime and instances of sexual misconduct at Willowbrook, but generally these articles were uncritical, giving Willowbrook the benefit of the doubt. An article in the Staten Island Advance, explaining four recent deaths of residents, noted that ‘‘Two or three retarded girls give birth to children each year at Willowbrook, but in almost all instances, the girls come to Willowbrook pregnant or are made pregnant during visits home’’ [55]. Pregnant girls were dropped off at Willowbrook by parents who didn’t want to deal with her anymore, and wards of the state were being impregnated during home visits. It seems reasonable to hypothesize that rapes must have been underreported in the press, yet reports of a few leaked through to the press occasionally. In 1974, a New York Times article tallied the rapes for 1972 and 1973. They found evidence of one rape in 1972 and four in 1973 [57]. So, although there were few mentions of rape or sexual assault at Willowbrook, it was clearly going on. Many interviewees reported that they had heard about staff sexually assaulting residents, a violation of both age and consent laws. Before detailing these stories, it is clear that at least one of the accusations against a staff member was false. In late 1960s and the early 1970s, Willowbrook campus reflected the racial tensions throughout the nation; 85% of the employees were not White, and accusations of racial discrimination racked the school [58]. One of those who had complained about racial discrimination was accused of raping a resident, an allegation, of which he was later exonerated [59]. All eight participants mentioned rape in their interviews. Two respondents mentioned that they had heard rumors of staff sexually abusing the residents, and one respondent
123
Sex Disabil (2008) 26:83–103
99
heard of an allegation of rape but it was disproved. ‘‘Favorites’’ were the target of sexual advances. A former worker knew of an incident: …I heard staff member[s] [were]…pushing them to…have…intercourse… …[They’re] pretty,…physica[lly] attractive, young lad[ies]. Some staff were having…relation[s] with them. She had heard: ‘So and so’ was…getting sexual gratification from…a consumer because the consumer was high function[ing]…[He was] bringing her special perfume and things… Another former staff reported she heard rumors that birth control pills were given to some young women. However, this ‘‘miracle’’ pill didn’t do wonders for every girl. There were some who got pregnant. All of the respondents spoke about pregnancies. For example, one respondent said: Well, nobody really knew what was going on. It was more or less like this other guy that was working on the…food trucks…he was…a patient himself. Well ex-patient, and the…. state hires them…and nobody knew it, but he was having sex with this one patient… In one of the rarely detailed news accounts of Willowbrook, the Staten Island Advance Register published a news chronology of recent events on campus. From 1970 to February, 1972, there were several reports of residents becoming pregnant. Three babies were born in the fall of 1970, although the article suggested that many ended as ‘‘therapeutic terminations’’ [53]. One former employee mentioned that both outsiders and staff raped the residents, but that consensual sex also occurred. Dr. Bronston noted, in his oral history interview, that staff who were convicted of raping residents were sometimes fired by the institution: Interviewer: …Did the staff rape the residents? … Dr. Bronston: …I am sure some did. I: Ok. Dr. Bronston: …and people were caught, sometimes. And people were fired. Sometimes. And most of the time, not …There was rape going on. I have no doubt. Pregnancies occurred…both by rape and not by rape… One respondent said that rape not only occurred between the residents, but also between the staff: I: So most… of the rapes occurred between… the staff member and the resident? E: They say both. Staff member against staff member, and residents. There were many newspaper articles that also mentioned patients that were sexually mistreated by the attendants. An article dated April 29, 1973 reported: A 35-year-old clothing clerk at the State institution for the mentally retarded charged with raping a 12-year old girl patient. The suspect followed her in the bathroom and sexually assaulted her. He was arrested and charged with first-degree rape and sexual abuse (p. 34) [60] The Staten Island Advance in 1973 reported another case of a former inmate raping a resident at Willowbrook:
123
100
Sex Disabil (2008) 26:83–103
…A 20-year-old man allegedly raped a 13-year-old Willowbrook State School girl. According to police, Willie Summers, a former inmate of the institution, attacked the girl…in a wooded area on the school grounds. He was arrested…and charged with rape, sexual abuse, endangering the welfare of a minor… [61] The New York Times (1974) reported of another case in which a worker sexually abused two residents: …An employee of the Willowbrook Developmental Center was dismissed…for having attempted to force two young inmates to have sexual intercourse in one of the wards…The employee showed the retarded boy how to undress himself and the girl, then took the two into a shower stall and tried to make them have intercourse. The employee invited other attendants to watch… [62] In 1975, the Staten Island Advance ran an article explaining that a cleaner employed at Willowbrook had been arrested for the rape of a patient in Building 2 [63]. It is unclear whether this was the perpetrator in any of the earlier reported attacks. Another incident involved a 25-year-old community worker. His job was to relocate the patients into the community; instead he was caught disrobing three female patients. Also, in an interview conducted by Fusillo, a recreational therapist stated: Channel Eyewitness News was there. I learned that one of the female residents had been taken from the building, through a screen. They later found her out in the woods. She had been raped and subsequently, was impregnated. They suspected one of the workers. One of the attendants, but not necessarily from that building (p. 103) [40]. Eventually, though, the media caught the story and ran with it. A spastic patient was molested, presumably by one of the attendants working the night shift. Apparently she was nine months pregnant. The Staten Island Advance (1977) reported: A 50-year-old employee of Willowbrook Developmental Center, Thomas Watson…was charged with rape…for allegedly having sexual relations with a resident at the center. Police described the resident only as a ‘female unable to consent.’ [64] In a twist on the story, and the first and only story of its kind, the Staten Island Advance reported on a 19-year-old resident of Willowbrook Developmental Center who raped and beat a 7-year-old girl from Silver Lake. The suspect, James Rich, was charged with first degree rape and endangering the welfare of a minor. Rich was described as having borderline moderate mental retardation and had been previously charged with two assaults. He had community privileges that allowed him to come and go off the grounds of Willowbrook [65]. The Staten Island Advance (1984) also reported of another rape in which: A 29-year-old…who works as a custodian in Staten Island Developmental Center in Willowbrook was arrested…on charges that he sexually abused a client at the center. The suspect, John Tomasello…is accused of abusing a 32 year old male client… [66] The Staten Island Advance also ran a series of reports of a former inmate employed as a maintenance worker who raped a 31-year-old woman who was mute with quadriplegia and profound mental retardation at the center [67–72]. Robert Bennett was 53-years-old when he was accused of having sex with the woman who was unable to give consent. The attack was discovered when she was pregnant and X-rayed because she was thought to have tumorous growths in the stomach.
123
Sex Disabil (2008) 26:83–103
101
Finally, Willowbrook, somewhat unbelievably, was also home to a serial murderer and one of his victims. In an extreme example of a story at the intersection of disability, sexuality, and gender, a serial killer camped on the grounds of Willowbrook, and likely killed a local girl and a few women employees. Andre Rand, a 43-year-old homeless sex offender, who lived in a wood lot in Willowbrook, was convicted in the disappearance of a 12-year-old girl, Jennifer Schweiger and two other girls. Rand (aka Frank Bruchett, Frank Rashan) was also a suspect in the murder of three other Staten Island girls and maybe two middle aged female employees at Willowbrook. His campsite was on the grounds of Willowbrook, only yards from where they discovered Jennifer’s body in a shallow grave in August of 1987, and not far from Jennifer’s home in the Staten Island neighborhood of Westerleigh [73]. Jennifer had Down’s syndrome, but she was not a resident of Willowbrook. Several witnesses identified Rand as they saw him walking hand-in-hand with Jennifer near Willowbrook. When police questioned Rand about Jennifer and the other girls, he responded ‘‘You’ll never find them’’ [74].
Conclusions The topics of sexuality, mental and physical ability, and gender, have been intertwined for years in medical and psychiatric discourse. Historians have largely subscribed to the Foucauldian notion that medical and psychiatric institutions sought to regulate and control gender and sexuality through segregation and socialization. In the modern era, hospitals aspired to the ideals of control and efficiency, and patient’s gender and sexuality were both unnecessary distractions. Willowbrook was a perfect example of the large bureaucratic medical factory. Coming of age in modernity, but spanning into the postmodern era, Willowbrook State School presented an excellent illustration of the failure of modern medical science, when a modern institution disintegrates: degradation, dehumanization, and exploitation. While hospitals in the early 1900s sought to regulate gender and sexuality by treating those who didn’t conform, the Willowbrook State School was a failure on both counts. Attempts by the institution to regulate gender early on were abandoned, as anarchy swept the school, dehumanizing residents beyond any societal roles like gender. Children were nude, or wore burlap gowns, and only the most advanced participated in any gender stereotypical occupational therapy. In one bizarre experiment at the school, boys were injected with hormones with the hope that masculinization would reduce their developmental disabilities. Sexuality was also unregulated, but in a specific sense. In the late 1950s, there was a pervasive idea that ‘‘mentally retarded’’ children were hypersexual, and Willowbrook attempted to segregated males and females so as to control sexual expression, and presumably reduce the number of potential pregnancies you could have on a campus with 6,000 youth. There’s no doubt residents were deprived of affection, and would seek it from visitors and staff with enthusiasm. Moreover, once older, many sought relationships from each other. Some unfortunately, were also the victims of exploitation, and were sexually assaulted by staff and community members. In the recent past, sexual experiences among youth institutionalized for developmental disabilities were rarely discussed, and as a result, many people were led to believe their sexual desires were illegitimate, and some were exploited sexually. Yet, regardless of ability, human beings have desires to feel intimate with others and to experience sexual pleasure, and there should be a way to acknowledge the importance of sexual expression among people with a range of abilities. Although the initial goal, of course, was to help,
123
102
Sex Disabil (2008) 26:83–103
Willowbrook largely serves as a lesson on what not to do, and what to do. Clearly, people with intellectual and physical challenges also have needs for intimacy and sexual pleasure. These needs will be expressed, even if an institution tries to regulate it. The best anyone can do is true to be open, human, and informative with clients who are expressing sexual pleasure or desire. Ideally, for the most capable, there should be explicit discussions about consent, health, pleasure, and for those with physical disabilities, private consultations focused on their unique needs and healthy access to maximize quality of living. Gender segregation might control pregnancy, but it does not control sexual behavior, so caregivers need to be respectful of the sexual needs of opposite and same-sex partners, and masturbation, in institutional environments. Indeed, given the central importance of these needs, it would seem support agencies could facilitate social opportunities for youth with physical and mental challenges. Many youth similar to Willowbrook residents would benefit from regular social interactions, perhaps with the potential to develop intimate relationships, and support staff that might facilitate healthy expressions of connectedness. References 1. Foucault, M.: Madness and Civilization: A History of Insanity in the Age of Reason. Vintage Books, New York (1988) 2. Foucault, M.: Mental Illness and Psychology. University of California Press, Berkeley (1987) 3. Foucault, M.: The History of Sexuality (vol. 1; Hurley, Trans.). Vintage Books, New York (1978) 4. Krafft-Ebing, R.: Psychopathia Sexualis (Ed. & Trans., D. Falls). Velvet Publications, London (1997) 5. Woodill, G.: Controlling the sexuality of developmentally disabled persons: historical perspectives. J. Dev. Dis. 1, 1–14 (1992) 6. Tepper, M.S.: Sexuality and disability: the missing discourse of pleasure. Sex. Dis. 18, 283–290 (2000) 7. Chesler, P.: Women and Madness. Harcourt Brace Jovanovich, Garden City (1989) 8. Braslow, J.: Mentally Ills and Bodily Cures: Psychiatric Treatment in the First Half of the 20th Century. University of California Press, Berkeley (1997) 9. Hill, D.B.: Gender and sexual non-conformity as madness: an update for 21st century New Jersey. Hist. Phil. Psych. Bull. 16(2), 22–23 (2004) 10. Gittins, D.: Madness in its Place: Narratives of Severalls Hospital 1913–1997. Routledge, New York (1998) 11. Rosen, G.: The hospital: historical sociology of a community institution. In: Freidson, E. (ed.) The Hospital in Modern Society, pp. 1–36. Free Press of Glencoe, New York (1963) 12. Hall, J.K.: Introduction. In: Hall, J.K., Zilboorg, G., Bunker, H.A. (eds.) One Hundred Years of American Psychiatry, pp. xvii–xxiv. Columbia University Press, New York (1944) 13. Rosenberg, C.E.: The Care of Strangers: The Rise of America’s Hospital System. Basic Books, New York (1987) 14. Hamilton, W.: The history of American mental hospitals. In: Hall, J.K., Zilboorg, G., Bunker, H.A. (eds.) One Hundred Years of American Psychiatry, pp. 73–166. Columbia University Press, New York (1944) 15. Thompson, J.D., Goldin, G.: The Hospital: A Social and Architectural History. Yale University Press, New Haven (1975) 16. Rothman, J.D., Rothman, M.S.: The Willowbrook Wars: Bringing in the Mentally Retarded into the Community. Harper & Row, Mahwah (2005) 17. Fusillo, E.M.: The Willowbrook State School: An Oral History. Unpublished manuscript, Special Collections, College of Staten Island Library (1994) 18. School attendant held in beating of 2. New York Times 1952 Aug. 22; p. 22 19. Excerpts from statements by Kennedy. New York Times 1965 Sept. 10; p. 21 20. Hammond, J., Sternlicht, M., Deutsch, M.: Parental interest in institutionalized children: a survey. Hosp. Comm. Psych. 20, 338–339 (1969) 21. State sued in death of retarded boy, 6. New York Times 1965 Dec. 1; p. 41 22. Bigart, H.: Willowbrook seeks to end crowding and add to staff. New York Times, 1965 Oct. 14; p. 49 23. Homicide, Willowbrook deaths on jury slate. Staten Island Advance 1965 Aug. 12 24. Records sought on Willowbrook. New York Times 1972 Feb. 1972; p. 33 25. Van Gelder, L.: Two attendants at Willowbrook accused of beating 3 patients. New York Times 1972 Dec. 7; p. 44
123
Sex Disabil (2008) 26:83–103
103
26. Kivlan, T.J.: Willowbrook doctor experimented on 18. Staten Island Advance 1974 Dec. 13 27. Shakespeare, T., Gillespie-Sells, K., Davies, D.: The Sexual Politics of Disability. Cassel, New York (1996) 28. Trudel, G., Desjardines, G.: Staff reactions towards the sexual behaviors of people living institutional settings. Sex. Dis. 10, 173–188 (1992) 29. Taleporos, G., McCabe, M.P.: Physical disability and sexual esteem. Sex. Dis. 19, 131–148 (2001) 30. Bnarden, G.: What conflicts arise when people with disabilities want to have sex? Paper presented to New York University Center for the Study of Gender and Sexuality, New York (2006) 31. Gust, D.A., Wang, S., Grot, J., Ransom, R., Levine, W.C.: National survey of sexual behavior and sexual behavior policies in facilities for individuals with mental retardation/developmental disabilities. Am. Assoc. Men. Ret. 41, 365–373 (2003) 32. Crossmaker, M.: Behind locked doors—institutional sexual abuse. Sex. Dis. 9, 201–219 (1991) 33. Murphy, N.: Sexuality in children and adolescents with disabilities. Dev. Med. Child Neur. 47, 640–644 (2005) 34. Abbott, D., Howarth, J.: Who to tell, what to say? Comm. Care. 153, 32 (2005) 35. Lyden, M.: Assessment of sexual consent capacity. Sex. Dis. 25, 3–20 (2007) 36. Owen, D.: Miracle of the ‘‘secret children.’’ Daily News 1955 Jan. 26; p. 34 37. Special program with retarded a ‘fantastic success’. Staten Island Advance 1971 Jul. 22 38. State school patients to exhibit work. Staten Island Advance 1957 Oct. 6 39. Full potential of patients is goal of school’s program. Staten Island Advance 1964 Mar. 25; p. 29 40. Kurtin, J.: Parents protest cutbacks at state school. Staten Island Advance 1971 Nov. 15 41. Fry, S.: Parents criticize lack of concern at Willowbrook. Staten Island Advance 1974 Sept. 12 42. Houseman, N.: Visitor finds little changed at Willowbrook. Staten Island Advance 1974 Sept. 20 43. Fry, S.: Court told Willowbrook causes irreparable harm. Staten Island Advance 1974, Oct. 10 44. Ristich, denies patients ‘running around naked’. Staten Island Advance 1974 May 3 45. Doctors study new treatment. Staten Island Advance Sept. [WSSM-2, Box 1, Folder 3.] 46. Max Reiss, Aided mental patients. New York Times 1970 Jul. 30; p. 28 47. Berman, H.H., Albert-Gasorek, K.E., Reiss, M.: Gonadal immaturity as an etiological factor in some forms of mental deficiency, and its therapy. Dis. Nerv. Sys. 20, 106–110 (1959) 48. Bullmore, G.H.L., Reiss, M., & Smith, D.W.: Investigations in a juvenile psychiatric unit. In: Reiss, M. (ed.) Topics in Psychoendocrinology, p. 63. Grune & Stratton, London (1958) 49. Who’ll never grow up. Sunday News 1957 Jul. 14; p. 73 50. Reiss, J.: They learned to do without: untold stories from Willowbrook State School 1958–1970. Unpublished manuscript, Special Collections, College of Staten Island Library (1994) 51. Brytcuk, F.E.: Volunteer sees a brighter side. Staten Island Advance 1972 Feb. 7 52. Pustel, G., Sternlicht, M., Deutsch, M.: Feminine tendencies in figure drawings by male homosexual retarded dyads. J. Clin. Psych. 27, 260–261 (1971) 53. News Chronology. Staten Island Advance Register 1972 Feb. 17 54. Dolgin, D.: ‘I don’t know how I survived 18 years.’ Staten Island Advance 1972 Jun. 28 55. Staff shortage factor in four Willowbrook deaths. Staten Island Advance 1965 Aug. 6 56. Freed, S.: Volunteers recruited for Willowbrook. Staten Island Advance 1966 Jan. 30 57. Willowbrook crime rose last year, Queens legislator tells lawmakers. Staten Island Advance 1974 Feb. 14 58. Probable that Willowbrook discriminated against 2 in firings. Staten Island Advance 1969 Nov. 18 59. Kivlan, T.J.: State orders Willowbrook to rehire 5. Staten Island Advance 1974 Sep. 6 60. Mentally retarded patient, 12, raped. New York Times 1973 Apr. 29; p. 34 61. $10,000 bail set in girl attack. Staten Island Advance 1973 May 19 62. Prial, F.J.: Willowbrook employee forced inmate to try sex, judge told. New York Times 1974 Oct. 4 63. Willowbrook rape arrest. Staten Island Advance 1975 Jan. 22 64. Suspect nabbed in rape. Staten Island Advance 1977 Jul. 7 65. Miraldi, R., Linsalata, M.: Teen arrested in rape of 7-year-old girl. Staten Island Advance 1977 Apr. 13 66. Crime roundup. Staten Island Advance 1984 Jan. 17 67. DesJarlais, R.: No leads found in patient rape. Staten Island Advance 1983 Dec. 10 68. DesJarlais R.: Developmental center officials, police press investigation of rape. Staten Island Advance 1983 Dec. 13 69. Labaton, M.: Willowbrook rape victim gives birth. Staten Island Advance 1984 Jan. 12 70. Labaton, M.: Retarded patient pregnant by rape. Staten Island Advance 1983 Dec. 1 71. Mack, J.: SIDC employee charged in rape of patient. Staten Island Advance 1984 May 24 72. Chapman, G.: Police investigating alleged rape of SIDC resident. Staten Island Advance 1986 Mar. 26 73. Chapman, G.: Volunteer’s hunch uncovers child’s body in Willowbrook. Staten Island Advance 1987 Aug. 13 74. Murbay, A., Crowley, K., Reyes, S.: Eerie words of kidnap suspect on 3 missing little S.I girls… ‘‘You’ll never find them.’’ New York Post 1987 Aug. 6; p. 5
123