Progression Toward Self-Advocacy
Today the Self-Advocacy Movement is a central part of the larger disability rights movement and continues to encourage individuals with intellectual or developmental disabilities to speak for themselves and be in control of the decisions that are made about their lives, but throughout disability history this was not always the case. During the period of institutionalization thousands of “feebleminded” individuals were sent by others to live in places like Willowbrook. However, there appears to have been little to no advocacy from these others for the health and well-being of the individual residents within these institutions at the beginning.
The New York State Custodial Asylum for Feeble-Minded Women
The New York State Custodial Asylum for Feeble-Minded Women in Newark, NY, for example, kept records of each of the women who lived there, but these records were, more often than not, incomplete. They included only the womens’ names, ages, when and where they were admitted from, when they died or were discharged, and yes or no answers to a few other medical questions listed on each page. Even the pages that were more detailed did not provide very specific information about who the women actually were, and instead included only short, family related, justifications for how the women might have been born feebleminded. One reason listed said “This is a case of hereditary idiocy” because the woman’s father was “idiotic.” These were the only bits of information written in the asylum’s Record of Inmates seemingly by a staff member, and they did not include any of the womens’ own voices.
Feebleminded women
In the late 1800s, using the 1870-1880 census data, Isaac Kerlin, one of the medical directors at institute in Pennsylvania noted an increase in the number of feebleminded people grew by 30%. The growth in the number of feebleminded led to an incredible raise in the number of institutions for segregating and restricting the rights of the feebleminded. As a result, by the 1900s, feeblemindedness was regarded as the nation’s number one enemy and therefore an end had to be undertaken. "Race suicide" was agreed upon. Race suicide was aimed at placing an end to people considered unfit and this was administered through control. Women and immigrants shouldered the blame.
Race suicide was used to imply the chaos and rise of degeneracy. Race suicide was often shouldered on by women who were regarded unfit by the white Americans who failed to control their sexual desires. According to the historian Roche (2022), “to southerners, feebleminded women, because they were ‘irrational’ and genetically controlled by powerful sexual desires, could not appreciate the need to maintain racial purity.
By 1922, the feeble-minded women topped the list of those to undergo compulsory institutionalization and sterilization. Feeble-minded female patients aged 15-45 years of reproductive age were admitted in institutions/almshouses, received sterilization as a sexual restraint against birth of more illegitimate feeble-minded children who were not only regarded as a burden but dependent on state welfare. To end this, there was a campaign to place an end to the unwanted population whose greater proportion of illegitimate children were feeble minded-- because the mother was feeble minded. (New York state board of Charities report,1879).
Historically, the terminology,feeblemindedness has metamorphosed over the past 200 years from Idiocy, imbecility, feeblemindedness, mental defect, mental deficiency, mental retardation and most recently intellectual disability or intellectual developmental disability. This evolution shaped the current political, legal, socioeconomic, educational and advocacy responses.
Elizabeth Wilson
Elizabeth Wilson, who is estimated to have stayed in the asylum for over 13 years, was regarded as feeble-minded. She was admitted as an inmate on December 20, 1887 and was discharged on February 22, 1900. Admittance records indicate that both her parents were labeled as weak minded but not idiots. It is important to remember that according to eugenics ideology, feeble mindedness was regarded as hereditary, passed from parent(s) to the child. One of the reasons for the establishment of institutions was to sterilize reproductive aged women considered to be feeble-minded as a means of preventing further production of such children (race degeneration) who were not only a burden to the state but a disgrace to society. There are no records of ancestry that indicated how many siblings Wilson had nor who her paternal and maternal relatives are.
Jimmy Thornton
When early evidence of advocacy for these institutionalized residents was present, it was strictly the job of the residents' families or parents in particular. One example of this comes from another institution, the New York State Asylum for Idiots in Syracuse. In this case, the story of resident James (Jimmy) Thornton is told only through one side of an ongoing conversation between the institution’s staff, specifically Superintendent Dr. Hervey B. Wilbur and Mary Thornton, Jimmy’s mother, through a collection of letters called the James Thornton Correspondence. In the letters, which were written between 1855 and 1866, Wilbur seems to be responding to questions from Mrs. Thornton about how Jimmy is doing. Most of them read very similarly and include repeated phrases like “[Jimmy] will make a very good pupil” and “[he] is very happy in his new home.”
Because Wilbur’s voice is the only one present in the letters, however we can only attempt “to recover the Thorntons' story on the whole” by “looking for the perspectives of the family and pupil himself” in the gaps between what the collection holds, as Zoscha Stuckey says and does in "What Has Become of Jimmy Thornton?: The Rhetoric(s) of Letter-Writing at The New York State Asylum for Idiots, 1855-1866.” In doing so, we might assume that Mary Thornton was attempting to advocate for her son to return home or at least get to visit with his family throughout the years that they were separated, because along with the positive updates about Jimmy, Wilbur also seems to respond to concerns like this. However, these responses are much less positive, and instead seem dismissive of what Mrs. Thornton’s letters may have included. In one letter Wilbur writes “a visit from you might make him homesick again,” and in another he says “[Jimmy] is much more in the way of improvement here than he could possibly be at home”. Most of Wilbur’s letters are very brief and do not include very much detail about Jimmy’s life or any contributions from Jimmy himself, even though Mrs. Thornton must’ve been writing to him at least once a month between each of these responses, until Jimmy did finally return home.
Like Mary Thornton, other parents at the time kept trying to do the same advocating for their own children with cognitive disabilities. Evan Chaloupka includes multiple letters from these parents to Henry Herbert Goddard, author of The Kallikak Family and “national source of scientific expertise” on the topic, in “‘Making Lovely Nonsense out of Everything’: Individuated Receptions of Eugenic Theories of Cognitive Disability.” These parents appealed to Goddard to ask him lists of questions about their childrens’ development, or to examine their children and give advice. One even asked him about the possibility of her unborn children being feeble minded based on other family members’ slow development or limited abilities. These parents looked to Goddard for all of this information in the best interest of their children, who like James Thornton, either couldn’t or weren’t given the opportunity to advocate for themselves.
Letter from Victor Craigin Noyes to Gerrit Smith
When residents did attempt to advocate for themselves, they were often overlooked. In a November 7th, 1867 letter from Victor Craigin Noyes to Gerrit Smith, we’re given a little insight from Noyes himself about the time he spent in the New York State Lunatic Asylum at Utica. Noyes starts the letter by asking Smith if he recalls a young man visiting him last August who said he was John H. Noyes’ son and wanted to “renounce his father, and the [Oneida] community.” He explains that this “resulted in his becoming an inmate of the State Lunatic Asylum of Utica” for nine months until he “continue[d] to escape.” Later in the letter, Noyes reveals that this young man is actually himself and that his father and a Dr. Gray wanted him to go back to the asylum and stay longer, believing he was not sane, but instead he was eventually “allowed [his] freedom” only to return to Oneida. At the time, the Oneida Community, founded by John Humphrey Noyes in 1848 around a year after Victor Noyes was born, had been running for 19 years. This means Victor was around 20 years old and most likely lived through everything happening in the community up until that point, including 9 of his 12 siblings being born as products of the community’s eugenics experiment. That Noyes, as the son of the founder, sought Smith’s help in renouncing his own father and the Oneida Community says a lot in itself, but that it resulted in him being labeled as not sane and sent to the lunatic asylum until they deemed he was back to his “usual” self, despite multiple attempts to leave, says a lot more.
People First
It wasn’t until after a group from Oregon attended a 1973 conference in Canada that they felt was dominated by professionals, that the Self-advocacy movement began to spread across the United States. This group formed People First, a self-advocacy group for people “who are developmentally disabled” that want to learn to speak for themselves and make their own decisions; and held the first annual People First Convention in Portland in 1974. From there, other chapters of the People First group began to form in other states. Members of the Washington People First chapter even created a People First Handbook, as a set of instructions to be given to others interested in joining the People First group and/or creating their own chapters. The handbook includes a detailed philosophy and very specific goals they wanted achieved, each with its own 1-2 page outline with a description of the goal itself, current status at the time, why the current status was a problem, and numbered steps for achieving the solution. Instructions for starting a new chapter of People First, being a good officer, having successful meetings, handling the chapter’s money, and setting more goals make up the remainder of the handbook.
Introduction of the Center on Human Policy
Self-advocacy then became a big priority within other organizations across the country as well. In an Programs for the Handicapped booklet from the Office of the Handicapped in Washington D.C., Douglas P. Biklen describes the early work of the Center on Human Policy (CHP) at Syracuse University. Biklen includes the Center’s philosophy of human policy, descriptions about the specific types of staff who worked there at the time (social scientists, attorneys, etc.) and what had already been accomplished in the first three years in terms of legal advocacy, demonstrations, publications, and training opportunities. Since then many Syracuse University students and Center employees have worked together to make advocacy a priority on campus and in the greater community. Michael Kennedy, for example, who spent 15 years in three different New York State institutions before working at the Center, helped to co-author multiple publications for the National Resource Center on Supported Living and Choice. One such document is the “Fact Sheet: Summary of Self-Determination” that outlines exactly “what self-determination is and what it is not.” This and many other resources in the CHP archives, as well as the current work being done at the Center on Human Policy as a whole, continue to make a huge difference in advocacy efforts for people with disabilities as the Self-Advocacy Movement moves forward.