It isn’t easy for me to write about institutionalization, because I’ve been through it. Though it’s been a number of years since I’ve experienced a locked facility, I still feel anxiety when I think of them. Even when visiting hospitals and nursing homes, I get anxious, as if someone will come up behind me and lock the door and I won’t be let out. But it’s this experience that has drawn me to explore my aunt’s history of institutionalization, though she had a developmental disability, not a mental-health diagnosis, and our stories are very different.
When my mother’s sister, Cindy, was born with Down syndrome in 1947, institutionalization in a facility like the Montana Developmental Center (MDC) in Boulder was almost certain. The National Association for Down Syndrome reports that in the first half of the 20th century, most children born with the genetic disorder were institutionalized immediately after they were born. Sometimes, doctors and fathers would tell the mother that the infant had died, then shuttle the baby off to an institution before she was the wiser. Given this context, Cindy was lucky. Her parents didn’t know she had Down syndrome until she was a toddler. The doctor who delivered her didn’t recognize the traits when she was born, and it wasn’t until she began missing developmental milestones that she was diagnosed. Even then, she wasn’t institutionalized. They kept her at home.
The Montana Developmental Center has been known by many names since it first opened around the turn of the 20th century. Originally, it was the Montana School for Backward Feeble-Minded Children. It’s also been called the Montana State Training School, the Boulder River School and, in 1985, it was rebranded as the Montana Developmental Center. It’s listed on the National Park Service website as a historic site, and is noted for both its architecture and its role in the country’s 20th-century trend toward mass institutionalization and sterilization of people with disabilities.
The buildings at MDC range from Italian Renaissance Revival to Modernist. The campus is situated in the Elkhorn Mountains. It is picturesque. It is isolated. And at its peak, the Montana Department of Health and Human Services reports, the “school” warehoused more than 1,000 people in a facility originally built for a few hundred. Although it is smaller in scale, MDC has been compared to Willowbrook, an institution on Staten Island, New York, that held more than 6,000 people with disabilities in overcrowded, degrading and inhumane conditions. Similarly, MDC has a locally infamous history of deplorable conditions, neglect, abuse — even rape — of residents. And it isn’t cheap. A 2015 Disability Rights Montana report calculated the cost at $849 dollars per patient per day, making MDC the most expensive custodial facility in the state. Now, in 2018, it’s mostly empty, having been slated for permanent closure by the Montana State Legislature in 2015. As of March 5, just 19 residents remained at Boulder. Some were waiting for appropriate community placements, and some will remain in the 12-bed locked facility, which was exempted from closure by the Legislature and will continue serving individuals whose behaviors pose a danger to themselves or others.
At some time in the 1960s, Cindy was institutionalized at Boulder.
I don’t know how Cindy would have been defined on the list of mental defects developed by American psychologist Henry H. Goddard and used by physicians and eugenicists to categorize and segregate people with disabilities. She may have been considered an “idiot,” an “imbecile” or a “moron.” Because she could make potholders on a hand loom, a skill she may have learned at home when she was a girl, or as a resident in Boulder, she might have been considered a “high-grade imbecile,” but I don’t know for sure. It’s uncomfortable even to quote these terms, but it’s our history, and it’s a relatively recent one. In the United States, these classifications were used into the 1970s, and they’ve shaped our ongoing beliefs about what people with intellectual and developmental disabilities are and are not capable of.
Although she excelled at making potholders — we had stacks of them at home — Cindy wanted more than that. My mother told me she had hoped to be a waitress at the Park Cafe in Anaconda when she turned 21. Her dad, my grandpa, Pete Bubash, was the butcher there, and Cindy got to know the place well. But her 21st birthday came and went and she never did land that job. It wasn’t possible. She was probably still in Boulder, and there were no independent-living services for people with disabilities, no job coaches to help them learn the skills they needed for employment and, at the time, almost no one believed a person with Down syndrome could lead a “normal” life. Now, we know that’s not true. People with Down syndrome have varying degrees of ability, just like anyone else, and can often achieve independent, satisfying lives with some accommodation and support. For example, in 2006, the New York Times featured Katie Apostolides, a young woman with Down syndrome who was enrolled at Becker College in Worcester, Massachusetts. In 2016, the Independent UK published a story about Noelia Garella, also a young woman with Down syndrome, who works as a teacher in Argentina. When I asked my dad about Cindy, he said he didn’t know much, but that as Cindy aged, she seemed to have figured out that nothing would ever change, and she gradually lost her smile. She became quiet. Depressed. That’s how I knew her.
Before my mother died in 2009, she told me that as a school-aged child, Cindy was enrolled in a special-education class in Anaconda Public Schools. According to the Survey of the Feeble Minded in Montana, published in 1919 by the State Board of Education, these classes would have offered some kind of training with the hope of reintegrating children with their peers or, if reintegration wasn’t possible, industrial training. But such classes mostly segregated children. The author of the survey argues that “no public school system can provide proper custodial care for feeble-minded children.” When my aunt was enrolled, in the 1950s, there’s no reason to believe the curriculum had changed very much from the time the survey was written, or that classrooms had evolved to be more than holding tanks.
Although special education has advanced a great deal since the 1950s, the National Council on Disability reported in February that segregation of children with disabilities from their peers continues in school districts nationwide, often due to lack of resources and inadequate staffing for fully integrated classrooms. During Montana’s last legislative session, cuts were proposed to special education programs in K-12 schools in response to a budget shortfall, and as the Bozeman Daily Chronicle reported in June 2017, there was already inadequate funding for Montana public schools to serve the rising number of students needing special-ed. In response, the Legislature formed an interim committee to consider improvements in special-education funding. The committee will deliver its recommendations in 2019. By contrast, in January 2018, the New York Times reported that the state of Texas had been proactive about holding down costs when, in 2004, the state set a maximum number of children who could receive special education services and began penalizing schools that exceeded it. This violated federal law and after a 15-month investigation, federal regulators determined that as many as 150,000 children had been illegally excluded from receiving services between 2004 and 2016.
After Cindy had exhausted what little training and education was offered in Anaconda, and after my mother left for college and could no longer participate in her care, she was placed in custodial care at Boulder River School, as it was then called. I’m not sure of the year, or for how long, or the exact progression of events. I know for a time she was sent to the State Hospital at Warm Springs. I know she lived at MDC when it was still the Boulder River School, or simply Boulder, as it is still known, but I haven’t been able to get access to her records, which are probably still with the group home in Anaconda were she lived out her life after her mother became ill around 2000. My requests for information have gone unanswered, and any family members I could ask for details have died. But I have generalities, and these are enough for me to understand the context of her time in Boulder, if not the exact dates or her specific experience.
The purpose of the Survey of the Feeble-Minded, which was authorized by the Montana Legislative Assembly in 1917, was to identify the number of “feeble-minded” people in the state and argue for increased state funding to provide for their “care and training” in a custodial facility. “Feeble-minded” was a broad category. Described in the Eugenics Archive, it included intellectual and developmental disabilities, mental illness and “low moral character,” the latter trait demonstrated by “promiscuity, criminal behavior, and social dependence.” People who were “feeble-minded” were often simply underachievers, poor or unruly students, or unemployed and impoverished, in addition to people with intellectual and developmental disabilities. Put simply, they were people society didn’t want. At the time the Montana survey was conducted, the training school at Boulder had a waiting list two to three times its capacity of 118, and served students for a maximum of 10 years, after which they were returned to their communities with no services or support. The survey claimed there were potentially 2,000 feeble-minded Montanans in need of long-term custodial care. In the 1920s, the school expanded to address some of that need, building cottages, sorting students by ability, providing education to those who could learn the “three Rs,” and industrial training to those who couldn’t.
All able residents were expected to work for the institution in some way: farming, cleaning, cooking , and even providing care to other residents when staffing was sparse. Tom Seekins, a psychologist who worked at Boulder in the 1970s, told me that at least one death was caused by this practice when a resident charged with feeding another resident became frustrated and shoved a spoon down her throat. The resident choked and suffocated.
Seekins described himself as young and idealistic prior to his tenure at Boulder, and when he first arrived, he was shocked. The residential cottages had no furniture. Residents roamed the halls with no clothes. The walls were smeared with feces and the floors were covered in urine. At one of the cottages, a single staff person sat against the door, chain smoking through a double shift, to prevent the residents from escaping. One of the first things Seekins did was order plastic chairs so the residents could at least sit up off the floor. I could only imagine the scene. I had never visited Cindy there when I was little.
The first and only time I visited the Montana State Training School/Boulder River School/MDC was in November 2016. I had a funny feeling that day as I wandered the historic south campus, trying doors and pressing my forehead against windows. I felt as if I were spying, though no one had lived in those buildings for years. The day was stark with a mix of bright gray and blue skies. The Elkhorn Mountains already had snow. The red brick of Griffin Hall and the orange stucco of the laundry house glowed like embers in the light. On the newer, still occupied side of campus are administrative and residential units, and I thought about finding a staff person and asking to be let inside Griffin Hall, or maybe Cottage 5, two of the older buildings on the south campus. But I didn’t. I didn’t know how it would feel to stand inside, to walk down a hall, to look into rooms where so many people had been locked away from their families and friends. When I peered through the locked door of one of the newer X-shaped cottages built in 1954, I saw a yellow plastic chair at the end of the hall. I’ve often wondered if that chair was on Seekins’ requisition list.
The Montana State Training School was a central part of the eugenics program in Montana. As described in “Sterilized in the Name of Public Health: Race, Immigration, and Reproductive Control in California,” an article written by Alexandra Stern, Ph.D., and published in the American Journal of Public Health in 2005, 32 states, Montana included, had eugenics laws. The first such law was enacted in Indiana in 1907. Montana’s was enacted in 1923. The purpose of these laws, as analyzed by J.H. Landman in his 1933 article, “The Human Sterilization Movement,” published in the Journal of Criminal Law and Criminology, was to provide a legal process for the sterilization of “potential parents of socially inadequate offspring.” Stern describes these laws as part of Progressive Era public-health activism that attempted to “apply science to social problems,” which were seen as genetic rather than environmental, and solvable through eugenics policies.
The Merriam-Webster definition of eugenics is “the practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population’s genetic composition.” According to Stern, people believed the practice might free humanity from the burdens of poverty, mental illness, alcoholism and other social woes. The Eugenics Archive describes 1920s-era Fitter Families Contests inspired by successful agricultural breeding programs. The contests were part of a Baby Health Examination program developed by Mary Watts, of the Parent Teacher Association of Kansas, and Florence Sherbon, a former field worker with the U.S. Children’s Bureau. The first contest was held at the Kansas State Fair in 1920. Families submitted their family trees and participated in medical and psychological evaluations to determine their genetic fitness. The highest prize was a silver trophy. The winners, overwhelmingly white, Protestant and of Northern European heritage, were encouraged to procreate with abandon.
In 2002, Dr. Lutz Kalber, professor of sociology at the University of Vermont, produced a state-by-state report that analyzed state eugenics laws and their impact on institutionalized groups. In Montana, 256 people — 72 percent of them women — were sterilized between the state law’s passage in 1923 and 1954. Montana lawmakers didn’t repeal eugenics law until 1981. Compared to other states, Montana sterilized relatively few people. From a PBS report titled “Unwanted Sterilization and Eugenics Programs in the United States,” I learned that between 1909 and 1979 the state of California surgically sterilized 20,000 people in state institutions and was praised by Nazi Germany for its success. In continuance of the United States’ genocidal campaign against indigenous peoples, 20 to 25 percent of Native American women nationwide were sterilized between 1970 and 1976. And “Mississippi appendectomy” is a medical euphemism for unnecessary hysterectomies suffered by women of color at teaching hospitals. According to the PBS report, involuntary or coercive sterilization has occurred as recently as 2010 in prison populations in California, and in 2008, a Louisiana state representative, Republican John Labruzzo, suggested paying poor people $1,000 to get sterilized.
Although there’s no family story about this, it’s possible that Cindy was sterilized, and she was certainly vulnerable to other atrocities. I don’t know if Cindy was ever assaulted or raped at Boulder, but it’s likely she experienced some kind of victimization. The Bureau of Justice Statistics reports that people with all types of disabilities experience violent assault at 2.5 times the rate of people without disabilities. People with intellectual disabilities are by far the most vulnerable. A report by the Arc, a national advocacy program for people with intellectual and developmental disabilities, states that 49 percent of people with intellectual disabilities will be victimized by multiple instances of sexual abuse over the course of their lives. They are particularly vulnerable in institutions.
In 2003, the Billings Gazette published a retrospective article about Dr. Phil Pallister’s time at Boulder. Pallister served as clinical director of the Montana State Training School from 1947 until the early 1980s. When he started, not only did he find unsanitary conditions, rampant infections and resident malnutrition, but also deaths due to drowning in tubs and residents assaulting other residents. I don’t know if Cindy was malnourished or beaten, but when Pallister, a medical doctor and pioneer geneticist, arrived at Boulder, he said, people were locked up 50 to a room and shared buckets for water. This was well before the population peaked in the 1960s. Early in his tenure, he tried to institute change, but state officials, not clinical directors, controlled policy and funding, so there were limits to what he could do.
When Tom Seekins began work at Boulder in the early 1970s, he reported many of the same conditions and worse. In the hospital unit, he said, people who were unable to move or care for themselves were trapped in adult-sized cribs and, because there was not enough staff, had to lay in their own excrement for hours. I can’t know Cindy’s lived experience, but people with disabilities were routinely exposed to these tortures. It wasn’t until 1972 that public attention was drawn to the problem of custodial institutions for people with disabilities and change began to occur at the state and national level.
In 1972, Geraldo Rivera’s report on Willowbrook, an undercover expose of inhumane conditions at the New York institution, brought these kinds of facilities under scrutiny and added fuel to the deinstitutionalization movement. The Boulder River School, as it was then known, had experienced several resident deaths due to neglect. When a worker strike in 1974 necessitated mobilization of the Montana National Guard to assist the remaining staff, the state could no longer ignore the problem, and deinstitutionalization gained momentum in the next legislative session.
In 1975, state representative Ann Mary Dussault was part of a bipartisan push to provide funding for home- and community-based services. The effort was motivated not only by the overcrowding and staffing crises at Boulder and similar institutions across the country, but by growing social and political pressure, initially led by parents of children with disabilities. In Chicago, Marty and Kay McGee resisted institutionalization for their daughter and in 1960 founded the National Association for Down Syndrome to provide a supportive network for parents who wanted alternatives to institutionalization and funding for services that allowed children to stay with their families and live as independently as possible as adults.
In Montana, lawmakers in the state House and Senate had family members and friends who had children with disabilities, personalizing the issue and generating rare agreement. The effort, combined with the work of child advocacy groups, created meaningful change for people with intellectual and developmental disabilities. Though the community services that resulted are far from perfect, and more work needs to be done, people with intellectual and developmental have been largely restored to their communities and freed from permanent institutionalization in inhumane, overcrowded and isolated facilities.
In the old photographs I have, which aren’t many, Cindy has a bright look in her eyes and a sweet smile. Her face is open and friendly. There’s a photo of her at Boulder with my mother and grandmother in which she appears to be laughing. She was young. She may have enjoyed her peers. She certainly enjoyed visits on and off campus with her family. But reports of abuse and overcrowding led my grandmother to complain frequently to the administration, and eventually, when the population reductions began in the 1970s, she brought Cindy home to Anaconda for good. In the years after Cindy returned to the community, my grandmother, in her own way, became an advocate for people with disabilities. She was active in Special Olympics, and even won a state Developmental Disability Service Award in 1996. In Anaconda, the Margaret Bubash Group Home, Cindy’s final residence, is named after her.
But Cindy never did achieve her dream of becoming a waitress. She remained dependent on my grandmother until she moved to the group home when my grandmother grew too old to take care of her. She did well there and made friends, but she wasn’t there long.
My grandmother died in 2002. Three years later, group home residents found Cindy in the common area. She was unresponsive, wet from a recent shower, cold and still in her robe. She had developed pneumonia, and within a few weeks she died of sepsis in a nursing home. At the funeral, my mother put origami cranes into the casket as a symbol, I guess, of Cindy’s freedom in death. Of course, she shouldn’t have had to die to be free, but the mythology that death frees people with disabilities from their “affliction” isn’t antiquated or passé. It’s rampant.
After Stephen Hawking’s passing in March, disability advocacy groups were outraged that his death was described as freedom from his limitations, and in particular from his wheelchair. Stephen Hawking’s wheelchair supported his independence. He was not in need of liberation from his assistive technology. It justifies our apathy and mollifies our conscience when we imagine that people who were prevented from leading full lives while they lived — due to ignorance, mistreatment and oppressive policies — will achieve their dreams when they die. Cindy will not be a waitress in the afterlife.
Janice Frisch was chief of social services at Boulder River School in 1975 when she participated in the Helena Independent Record’s supplement, “Us and Them: Mental Care in Montana,” a package urging voters to support deinstitutionalization. Frisch advocated for closure of the Boulder River School and went on to critique institutions more generally as being “... not fit places for people to live. Institutions service society, not the people they are stated to serve. They only remove from society problems with which it doesn’t want to contend.”
Though it’s tempting to believe that institutions like Boulder and unfulfilled lives like Cindy’s are relics of the past, Montana lawmakers failed to address the state’s budget shortfall during the 2017 special legislative session and, as a result, drastic cuts to state funding were required by law. The Department of Health and Human Services, the branch of state government that serves the health-care and independent-living needs of people with developmental and intellectual disabilities, took the brunt. In press conferences and in testimony to the Legislature, parents of children with disabilities, individuals with disabilities and disability-rights advocacy groups have said they fear that community-based services will be dismantled as a result.
Reductions in services mean that families will struggle to care for children and adults with disabilities who have fewer community-based supports. It will be harder for adults with disabilities to maintain independence and remain free of institutions. Helena Industries provided employment and rehabilitative services for more than 900 people with disabilities annually. It shut its doors in April. Opportunity Resources, Inc. has had to discontinue its case-management program for people with disabilities, and other organizations are reducing staff and services in an attempt to keep their doors open. By the end of March 2018, involuntary commitments of adults with mental illness in Missoula County had increased by about 30 percent over the same period last year.
Cindy only ever called me “niece,” never by my name. Once, when I was in grade school, my mother took me to Anaconda for her high school reunion. One night at my grandmother’s house, it was just me and Cindy on our own. I remember we sat on the floor in front of the television watching Lawrence Welk reruns, and I was overcome by a feeling of wanting to connect with her. It was a feeling I’d never had before — Cindy usually irritated me because she always insisted on tucking in my shirt — and I was stuck wondering how to form a bond that, for some reason, I’d just decided was important to me.
I asked Cindy if she wanted some yogurt, thinking, I guess, that getting someone a snack is a sign of affection. When she answered, I couldn’t understand her (she was almost nonverbal by that time), but I went to the kitchen and took out a little plastic tub of Dannon. When I came back and gave her the yogurt, she didn’t want it. She just wanted to watch TV, so I stayed there, sitting closely, trying to strategize my next move.
I didn’t come up with one, and we never did get to know one another. I never tried again. Neither Cindy nor I knew how or where to start. She continued to hug me and pat me and tuck in my shirt, but that was as far as our relationship went. When I visited her in the hospital as she was dying, she was unconscious. Her face was pale and waxy and she was barely breathing. I wanted to do something, but there wasn’t anything. So I watched her. I think I said a prayer. I patted her hand and lingered for a while and then I left. She died alone.