 Michael Rembus is the director of the Center for Disability Studies and an associate professor in the Department of History at the State University of New York at Buffalo. His research interests include the history of institutionalization, mad people's history, the history of disability, and the history of eugenics. He is currently working on a book entitled Writing Mad Lives in the Age of the Asylum. In his lecture, accessing the archive, disability, race, and the history of eugenic institutionalization. Professor Rembus will focus on the connections between disability, ableism, institutionalization, and eugenics. You will focus as well on the importance of the archive in recovering the experiences of survivors of eugenics and of institutionalization. Hello and welcome. Thank you for tuning in to this talk, accessing the archive, disability, race, and the history of eugenic institutionalization. My name is Michael Rembus. I am a professor at the University at Buffalo. I want to thank the NIH and the NHGRI for sponsoring this conference and for inviting me to speak with you today. I'd like to begin my talk accessing the archive with a personal story. When I began my research for what became my first book in 1996, I was interested in the history of eugenics and in the history of institutionalization of people considered feebleminded. I knew that I wanted as much as possible to tell the story from the perspective of people considered feebleminded. And so I decided to focus my study primarily on two institutions in Illinois. The State Training School for Girls in Geneva, Illinois, and the Lincoln State School in Colony for the feebleminded also in Illinois. This is a picture that I found during my research. It's a black and white sort of CPF photo of young women at Geneva in one of its classrooms. All of them are looking at the camera. As I said, it was my intent and my goal to try to tell the story of eugenics and the history of eugenics in the United States as much as I could from the perspective of these young women. So why did I choose these institutions? And why did I choose Illinois? Illinois offered many ways from my perspective in the 1990s to nuance what was then an as yet rather undeveloped history of eugenics, a historiography of eugenics. Illinois was an interesting case because many progressives and women reformers were involved in eugenics in Illinois. And Illinois, unlike other states, never passed a sterilization law. The Illinois legislature created, I'm sorry, eugenicists in Illinois created a model sterilization law, but it never came up for consideration in the state legislature. While educated, she has on her cap and gown, most likely a college graduate, if not someone who holds a professional degree or graduate degree. And she has this side here is sickled, and she's weeding the garden of humanity. She's tending to this garden, this flower bed. And as you can see, she's pulling up one here and presumably going to chop it off and cut it off. And you can see in these photos here in the images, I'm sorry, different folks portrayed in various poses. Eugenics in Illinois involved much more than racist reactionary eugenicists such as Madison Grant and Mothrop Stoddard and others who are often associated with eugenics. They didn't involve people who consider themselves to be progressives and reformers, and involved a lot of women reformers in Illinois. And they were interested in using eugenics to improve, from their perspective, improve society and improve the human race. What also really interested me about eugenics in Illinois and is also depicted in this image is that the images of heads, depictions of heads that are supposedly unfit are portrayed as deviant or defective in some way, visibly quote, deformed. You can see one there and there in here. And the other folks are in very romantic poses, which tells us that eugenics was as much about love and marriage and choosing the right mate, as it was about removing these so called defective people from society. And so this really intrigued me in the history of eugenics in Illinois. During the course of my research, I also discovered that there were thousands of unprocessed, which means they had not been archived case files from the state training school in Geneva, which was another reason why I chose to study that institution. The records I was told were being stored on the campus of what is now and what was then the boys correctional facility in St. Charles Illinois, which is considered to be Geneva's quote sister city right across the river from Geneva. I was digging and I talked to folks and I eventually determined that these files did indeed exist, and they were being stored at the St. Charles performatory, and that they had never been processed and never been archived, and no one had ever formerly looked at them. And so I thought this was a wonderful opportunity, because case files can be rich sources. If we read them, if we read them creatively, and we read them critically, some contain letters sent from inmates to their family members and other folks for letters to administrators. Others other files can contain detailed accounts of interactions with physicians and psychiatrists and psychologists, and in the case of Geneva, which was considered an educational institution with teachers. I also knew that these case files could contain academic progress reports, and possibly the results of intelligence tests and psychiatric and psychological evaluations done on the young women incarcerated at Geneva. So as you can well imagine I was very excited when I learned that these files existed and were being stored at St. Charles. I ran into some major problems, however, and this is why I titled my talk today accessing the archive. First of all, as I said no officials would confirm that the files existed I found out through informal channels. I actually a relative of a relative worked at St. Charles, and inform me that the files didn't need exist, but no officials would actually acknowledge their existence. And when I pressed them on this issue, some said that the files had been destroyed, others acted like they knew nothing about the files, and said that even if the files did exist I would not be able to look at them. And this concerned me because as I said I wanted to tell the story of eugenics in Illinois as much as I could from the perspective of the young women who were being targeted by eugenics. So institution administrators at the time, judges and other people at the state archives told me that these files if they did exist would be restricted under Illinois law and later under federal law. The files were closed because they were considered juvenile records and because they were considered medical records. So it was incredibly difficult to gain access to these files. I ultimately did get a court order in the Circuit Court of Cook County in Chicago, and I obtained permission from the warden of St. Charles to go on to the St. Charles campus, and I had several inmates help me access the building and I found the documents there they were. There were dozens of boxes filled with case files, tens of thousands of case files from multiple institutions in Illinois, none of which had been processed or archived in. And they were also when people were also denying that they even existed. So I got access to the records and I looked at the files and I ended up writing, you know, my first, what became my, my first book. The point here is that it's incredibly difficult to access the experiences of people that have become the subjects of eugenics. People like the young women at Geneva and the people institutionalized at the state school and colony in Lincoln, Illinois. It's incredibly to incredibly difficult to access their voices their experiences, because the files are restricted and because people frankly don't want to tell those stories they don't want to hear those stories. They deny either, you know, out of ignorance or perhaps sometimes intentionally deny that the files exist. They say that the files have been destroyed, and it's so it's difficult to get at these perspectives. But I, as I said, access the files. And I, so and I wrote the first book, which was about eugenics in Illinois. And, as I said, it was an interesting project because it gave me a chance to think about both race and eugenics and eugenics in what at the time was a different light. The eugenics and eugenicists were not the eugenicists in Illinois at least were not blatantly racist and many of them consider themselves to be progressives. People like Dr. W, W a Evans were involved in eugenics in Illinois. Evans was a physician who had come to Illinois from New Orleans. And he worked as the, as the Chicago's health commissioner. And he was also a eugenicist. And here I think is a really important point that Evans made and that my first study made and I want to share it actually just by sharing some quotations from Evans, who published a weekly column in the Chicago Tribune. It was campaigning for pure milk and crusading against infant mortality as Chicago's health commissioner considered these to be vital reform efforts. But he said that they attacked only part of the problem. We have been so busy with environment Evans asserted that we have forgotten teamwork. Race betterment is loaded in a two horse wagon to which is hitched improved environment and eugenics. Evans and other eugenicists contended that insanity alcoholism drug addiction cancer consumption neurosis hereditary deafness multiple sclerosis and many other quote ailments conditions diseases and handicaps could all be greatly reduced or even eliminated. Only if society worked toward improving the quality of the gene pool as well as the quality of the swimming pool. So in other words, eugenicists in Illinois saw eugenics as a progressive measure, but it was inherently conservative and discriminatory because it focused on eliminating people that were considered to be defective or disabled or quote handicapped in some way. They were considered the unfit members of the race and in order to improve society and improve race and by which people like Evans and others and usually met the human race. They required their elimination from society. So this led to this push to remove so called defective people led to a rise in institutionalization in the United States. Institutions have been around since the early 19th century. There were so called specialized institutions for people who were considered quote deaf and blind and quote dumb. And by the end of the 19th and also a silence for people experiencing mental troubles and people thought to be insane. And by the by the end of the 19th century, they're emerged across the United States, a huge network of state institutions that had become large, essentially custodial institutions. They were crowded, and they were just awful places for people to live. And this this happened this this growing institutionalized population occurred in the early 20th century, as we can see here from these statistics in 1900, there were about 126,000 people who were institutionalized in 131 state institutions. In 1929 that number increased to almost 273,000 by 1940 it increased to almost 420,000 and by the mid 1950s there were more than 560,000 people in institutions in the United States. Large structural shifts in society that contributed to this growing institutionalized population, such as industrialization, urbanization, immigration, internal migration, which made it difficult for people to at least from the perspective of new genesis to live and thrive in a modern society. Also during this time the late 19th century, in early 20th century, we see the rise of medical and professional power in the United States. And the creation or further entrenchment of quote deviant and quote defective bodies and minds recall the images of those heads on the flowers in the flower bed in the earlier slide. Through the tools of modern science and scientific medicines such as labs and statistics and intelligence tests, which were introduced in 1908 to the United States and other evaluations such as psychiatric and psychological evaluations. A range of professionals were defining people as defective as deviant and some eugenicists were arguing that those folks should be removed from society. And as I mentioned many of them were institutionalized during these first five or six decades of the 20th century. So we can see that the rise of eugenics while not solely responsible for the rise of institutionalization in the United States was largely responsible for the massive growth of custodial institutions during the first half of the 20th century. I want to pause for just one second and point out this photo here on the right. This is a typical interviewing room it says at the new Institute for juvenile research. This would be about 1915 or 1920. This is the room where young people like the young women pictured in the first photograph that I showed would come and have psychiatric and psychological evaluations and take intelligence tests and be defined as people minded as mentally defective. And as ultimately people who were in need of incarceration, either in the state training school at Geneva or in the Lincoln School in Colony in Lincoln, Illinois. At the height of this institutionalization of so-called defective and unfit people. Journalists and others and a lot of former inmates of Asylum's drew increased attention to institutions and to conditions with within institutions and this led by the late 1940s and 1950s to people to start talking more and more about de institutionalizing about moving people out of institutions. This however would take decades to achieve and somewhat argue that it's never it hasn't been fully achieved. But here I offered some examples of articles that were published during the 1940s by journalists and some of the congressional measures that were taken to try to to try to shift the locus of what would be considered care at the time away from institutions. In 1946, Albert Maisel published Adlem 1946. Most US hospitals are ashamed and a disgrace in life magazine. This was based on the reports of conscientious objectors to World War two who served, who did their service during wartime at state hospitals and took photographs and took notes and ultimately shared that information with journalists and wrote about it themselves as well. This in part led in to the US Congress passing the Mental Health Act in 1946. And then there were other studies as well Frank writes out of sight out of mind, which was based again on those CEO, those conscientious objector reports of 46 different mental hospitals added further publicity to the just wretched conditions within these institutions. Albert Deutsches The Shame of the States was a book that was published in 1948 that can lead or added to the growing critique of institutions. And finally in 19 so in 1955 Congress passed the Mental Health Study Act which created a joint commission on mental illness and mental health. And then in 1963. Kennedy signed the Mental Retardation Facilities and Community Mental Health Centers Construction Act, which was supposed to help to eliminate large state institutions and move the locus of care and intervention out of large state institutions into the community, and into smaller institutions. The legislation did not fund the large state institutions, but it did fund smaller institutions like nursing homes and other facilities. As I said that were meant to get people out of institutions and into into the community. This legislation was underfunded and wasn't all that effective especially initially in emptying institutions. But at the same time, there was a growing movement among disabled people and among the family of people who were institutionalized and people who could potentially become institutionalized to actually keep people out of institutions and move people out of institutions and I have here an example that I want to share with you. It's from the magazine Bound and it says and it centers around a nine year old named Jane or Janie as her mother called her. Janie became the subject of an article written by her mother Violet Ebb Lindquist and published in as I said the magazine Bound, which was quote Iowa's own magazine in 1958. The article was entitled, I'm glad we kept Janie at home. And it begins with the declaration that Janie's quote crudely cut Christmas gift for her parents, which was a calendar strengthened their conviction that they had chosen the right course for their family in spite of advice from specialists to the contrary. And Janie was at the time considered to be quote among the Lloyd and a mentally retarded child. And her parents contrary to both popular and expert opinion that is the opinion of physicians and others chose to keep Janie at home. They were not alone. Although the rate of admission to public institutions for intellectually and developmentally disabled children under six years of age double and children under six went from nine to 19% of all admissions to institutions between 194545 and 1955. There were signs that institutionalization was no longer tolerable for many families. A 1950 study found that 88 local parent groups, most of which have been formed between 1946 and 1950 had 19,300 members in 19 states, and that they were advocating for community living for disabled people. They're mostly they're disabled relatives and children. Also in 1950 local groups came together and formed the National Association for Retarded Children or NARC. By 1960 the NARC had 681 local affiliates and a membership of 62,000 people, which at that time was mostly parents, but with over the decades increasingly come to involve disabled people themselves who like to refer to themselves as self advocates, and use people first language it was sometimes it's called the people first movement. And these folks were dedicated to finding alternative forms of care and education for their children. Although she would not characterize herself in that way Janie's mother was one of those activist parents who would help hasten the institutionalization and promote the public education of intellectually and developmentally disabled children. In addition to people like Janie's parents, there was also a growing disability rights movement in the United States after World War two throughout the oops I'm sorry throughout the 1950s and 1960s. And into the 1970s and continuing through the rest of the 20th century into the 21st century disabled people themselves became more active in advocating for their own rights. People would have been institutionalized during the era of eugenics, like this gentleman here holding the disabled and proud sign, and other disabled people would have been institutionalized during the height of eugenics movement came out onto the streets, and into the state legislative houses and into Washington DC, and increasingly advocated for their rights, the right to live independently in the community, and the right to have their, their legal civil rights, respected and honored. And this movement grew, especially during the 1960s and 1970s became known as the independent living movement. Within the midst of this mounting disability rights movement and in the midst of increasing government actions such as the Kennedy administration's passing of the Community Mental Health Centers Act. These large institutions, many of which were created during the height of eugenics or just before the rise of eugenics and became filled to overcrowding. During the first 50 years of the 20th century during the eugenics era became the target of investigations, further investigations by people. One of the most infamous to come under scrutiny was the Willowbrook asylum on Staten Island in New York City. It opened in 18 or I'm sorry 1947. So toward the end of that 50 year period of eugenics sort of the height of eugenics, and it remained open until 1987. Designed to accommodate 4000 people. Imagine housing 4000 people under one roof. I think you can, you can get a sense of what life in that institution might have been like. At its peak in 1965, it held 6000 inmates 6000 people. So an institution that was already meant to be incredibly large was over was overcrowded. It held primarily people with intellectual and developmental disabilities. Those people who were considered unfit those people represented in that flowerbed by those quote defective and deformed skulls that the woman with her cap and gown was attempting to remove from the flowerbed. Those are the folks that were housed in the Willard institution on Staten Island. When Robert Kennedy visited the institution he referred to it as a quote snake pit, referring to the 1940s novel written by a woman who had survived institutionalization in New York State. And also to the film that that the film of the same name that was based on the novel that won an Academy Award in 1948. The Willard book institution came under further scrutiny in the early 1970s. Haroldo Rivera, who at the time was considered was a much more seriously minded journalist. For those of you who are old enough to remember this was the pre Al Capone's vault years of Haroldo Rivera. This was before he went on live television claiming to open her old open Al Capone's vault in front of the world, which kind of led to the downfall of his journalistic career. Haroldo Rivera in the early 1970s went into Willowbrook with cameras recorded what life was like, which was tragically isolating and debilitating as you can see here from this photograph for inmates at Willowbrook. This resulted to a in a class action lawsuit filed in the US District Court for the Eastern District of New York State in March 1972. The case went to trial and was finally settled on April 30 1975 when judge when the judge signed the Willowbrook Consent Judgment, which became known popularly as the Willowbrook Consent Decree. It established the guidelines and requirements for operating the institution and set the goal of reducing the number of inmates at Willowbrook to no more than 250 by 1981. So in six years the institution would have to go from over 6000 inmates to 250. So as you can see here the point is that there was legislation that was being passed to try to dismantle the institutions created largely by the eugenics movement, but it was happening slowly and in some cases was not receiving the funding required to effectively eliminate institutions and the public became involved, especially disabled people and their allies and forced the government to act through the legislature and through the courts and ultimately resulted in cases like that of Willowbrook, which resulted into the consent decree and other cases as well throughout the throughout the country, less well known cases. This hastened the de institutionalization of people during the late 20th century, but still did not eliminate it and did not eliminate the legacies of that eugenics movement centered around institutionalization in the early 20th century. The United the the census of state institutions found that there were the institutionalized populations down to 132,000 for more than 559,000 in 1955 by 1980, but people were still being institutionalized, and people were still not able to to exercise their civil rights and their human rights were being violated sometimes in the way that they were being treated. Despite the passage of more legislation, including the 1990 Americans with Disabilities Act, which was meant to secure the rights of disabled people. So in 1999, the United States Supreme Court ruled in Olmsted VLC that unjustified segregation of persons with disabilities constitutes discrimination under the ADA, under Title II of the ADA, and it ruled that people with disabilities had to live in the community with all the supports necessary to ensure that they had a meaningful life in the community. That was in 1999 and still over the next 20 years in the early 21st century people were still fighting to enforce that ruling and to provide people with disabilities in the community and still so in a sense grappling with the legacies of eugenics that defined race in ways that made it difficult if not impossible for people who were different differently embodied and who thought in different ways to live in society. People who had been institutionalized. And so this brings us back to our original point that I was making in the beginning of the talk. And that is accessing the archive. By the 1990s accessing the archive and become a political story. And so it was it was a political story that was my own personal story. I working in the 1990s was attempting to access the documents that would enable me to tell the stories of people like Lois Curtis and Elaine Wilson pictured here, one African American woman, white one white woman, who were institutionalized and who were the subjects of the Olmsted case. They had been committed to a Georgia institution. They were held against their will, and they were held longer than was deemed appropriate. And ultimately, as I said, led to the ruling in the Olmsted case. So in, you know, in the 1990s people became increasingly concerned like me with telling their stories and trying to get out their experiences with eugenics. This became this was and still is incredibly difficult. But there have been advancements that have been made people are increasingly and have been in the last 10 or 15 years or so increasingly digitizing institutional records, which as I said in the very beginning of the talk can lead to some interesting insights into the experiences of disabled people. They're also, you know, just finding and unearthing these records, much like, you know, the way that I did back in the 1990s when I first went about writing my story of the history of eugenics in Illinois. And I would argue that we need to tell these stories of people like Lois and Elaine that the history of eugenics and the history of race and eugenics and the legacies of eugenics are not complete and will not be complete until we tell their stories. And so it's critically important that we interview people that are still alive. And then we work as much as we can to try to gather first person accounts of institutionalization or accounts from family and friends of people who are institutionalized. And I want to just end here with an example of how this actually works in practice. And this is a Canadian example of the Canadians are a bit ahead of us. I think in this, although there are some really excellent efforts being made in places like North Carolina and Texas and California and other places to archive and access these stories. In Canada, in Alberta, one of the western provinces, a group of scholars received federal money from their research council to create a eugenics archive. And I'm going to click on this and I hope it works. This is the website, which is the eugenics archive in Canada. And as you can see here, it offers a number of ways to interact with the website it's written in plain language for people of any reading level to engage with. It actually situates eugenics in a global perspective through this interactive website. And it features I think the most important thing from my perspective and the most relevant thing to this talk is that it features here. Our stories here eugenics survivors share their lives and so people can access this archive and listen and watch people tell their own stories. People like Lois and Elaine and others who were institutionalized, many of which who were sterilized, many of which in Canada who were met with First Nations peoples tell their stories, tell their stories of institutionalization and for some stories of sterilization. And I think capturing these stories and archiving them and documenting them is incredibly important. It adds such a rich layer to an already rich history of eugenics that people have written using institutional documents and government documents and court records and other things. I think until we tell the story of the people who experienced eugenics and the legacies of eugenics, the history of eugenics will not be complete. So I want to thank you for sharing your time with me here today. If you have any questions or if you'd like to continue this conversation outside the framework of this conference, feel free to email me at my email here. marembusatbuffalo.edu. Thank you.