By A. G. Moore 8/23/2912
I have written about my brother Everett in earlier posts on this website (see: O. D. Heck and My Brother Everett). Although Everett was a much loved and treasured member of my family, he was sent to live at a state institution when he was about eleven years old. This move was taken with great deliberation and reluctance by my mother. My mother had been left to raise her children, six of us, by herself. She had no reliable source of income, no support services of any kind to help her deal with Everett’s profound disability and various medical issues.
Circumstances in the home were not safe, for Everett or the rest of us. So, the day came when my mother yielded to the entreaties of family and acquaintances. She did what was commonly done in those days: she sent Everett to live in a large facility at which, she was assured, professionals skilled in the treatment of the disabled would be in charge of Everett’s care.
Everett spent the rest of his childhood and early adulthood—perhaps twenty years—at Letchworth Village in Thiells, New York.
The following is adapted from my soon-to-be released book, Arrows Axes and Scythes:
Letchworth Village
Letchworth Village resulted from a convergence of two streams of American social theory. One was expounded by the founder of Letchworth, William Tyron Letchworth, a Quaker. The second was put into practice by the Charles Little, a eugenicist and the first superintendent of Letchworth Village.
William Letchworth had envisioned a campus of low-density, home-like cottages, and Little’s planned an institution in which the “feeble-minded” would be strictly segregated from society. He prohibited commingling of residents to prevent them from propagating.
An example of Little’s philosophy may be found in his description of a “case” that came before him. In 1912 he described justification for confining to Letchworth a young sixteen-year-old named ‘Giovanni’. Little laments the fact that Giovanni does not want to go to school or work; the young man instead goes to the movies and “chases after fire engines”. Little claims that Giovanni’s school record makes clear that the adolescent is an “institution case”. But the youth apparently does not want to go to an institution and, according to Little, his parents do not have the will to make him. So, Little concludes,”he (Giovanni) is left to choose whether he shall be taken care of in that way or become a public charge later, as he is sure to do. Perhaps he may be cared for by the state by committing some crime, perhaps as a pauper, having first been given the opportunity of bringing into the world a progeny with a bad inheritance and chances of failure even more certain than his own.”
Little’s argument for Giovanni’s confinement demonstrates the rationale under which generations of “feeble minded” were confined at Letchworth Village. Letchworth was by no means an exception to standard practice. Little had previously been director of Laconia in New Hampshire, a state school that referred to its residents as “inmates”. One of Laconia’s founders stated:”…as an act of self protection, is it not the part of wisdom to guard society from the crimes, the vice, and the immorality of this degenerate class, who with their weak willpower and deficient judgment are easily influenced by evil?”
William Letchworth died in 1910. Other than having the institution named after him and prevailing in the cottage design of the complex, his benevolent spirit could not be discerned in the place.
Over the years Letchworth established a relationship with the Eugenics Record Office at Cold Spring Harbor. Detailed background histories of incoming Letchworth children were taken and stored at the Cold Spring Harbor facility so families of Letchworth residents could also be tracked.
In addition to collaborations with eugenicists of ERO, Letchworth allowed its residents to be used as experimental subjects. In the early 1950’s a hitherto untested live polio virus was injected into twenty “volunteers” at Letchworth. These test subjects were in no way “volunteers”. They were confined in a state institution, and they were children.
~
The absence of medical ethics at Letchworth was further demonstrated in the case of Dr. George Jervis. In the annals of modern medicine, and in scientific literature, the name of Jervis stands large. He is credited with helping to develop an understanding of phenylketonuria, a condition in which phenylalanine cannot be metabolized. Those who suffer from this genetic defect, if left untreated, suffer profound mental retardation and other physical ills.
Jervis was able to performed research on this genetic condition because he used the pool of involuntary subjects at Letchworth Village. Dr. Jervis was affiliated with Letchworth for many years. In 1947 he published a paper that described the results of his research. In his paper, Dr. Jervis provides data on doses of phenylalanine, phenylpyruvic acid and L-tyrosine, which were administered to his research “subjects”. These “subjects” included: cats, rabbits, “normal” individuals and people affected by phenylketonuria. Dr. Jervis mentions in passing that some of the subjects were children and therefore were given reduced doses (because of reduced body mass).
Not only did Dr. Jervis’ experiments require forced fasting and the administration of large doses of phenylalanine, but they also required multiple instances in which blood was drawn.
None of the laudatory literature describing Jervis’ research refers to the ethics of his methodology. He is heralded as a pioneer in the field of phenylketonuria.
At the top of his manuscript on phenylketonuria research Dr. Jervis identifies himself as being “From the Research Department, Letchworth Village, New York State Department of Health, Thiells”. Besides Polio and Phenylketonuria, the question has to arise in a critical observer: what was entailed in the research of that department and how many Letchworth “volunteers” were recruited as subjects?
In 2007 Rebecca Woolsey, a student at San Francisco City College, published a paper in which she describes the influence of eugenicists on Letchworth Village. Among those individuals confined at Letchworth Ms. Woolsey reports, were “dwarfs, albinos, epileptics, Down’s Syndrome children, children with microencephaly (sic) and children with ‘flaring ears'”.
Although Letchworth Village had originally been envisioned as a low density residence in which no more than 70 people would inhabit one dormitory, Ms. Woolsey describes living condition at the facility in which 125 children were crammed into one dormitory and some areas of the facility in which there were no beds at all.
Ms. Woolsey describes such deterioration of conditions in Letchworth that by 1978 30% of 110 Letchworth deaths investigated by the Coroner were deemed the result of over medication with psychotropic and sedative drugs.
When ABC television broadcast an expose on Willowbrook Institute in the early 70’s, Letchworth Village was included in the report. The conditions of Willowbrook and Letchworth so shocked the public that a movement to close both institutions grew. Residents were gradually placed in other state facilities. By 1997 the last patient was
The first superintendent of Letchworth Village, Charles S. Little, envisioned an institution in which the “feeble-minded” were strictly segregated from the rest of society and from each other in order to prevent commingling and propagation of “undesirables”. Little had previously been director of Laconia in New Hampshire, a state school which referred to its residents as “inmates”; one of Laconia’s founders stated: “as an act of self protection, is it not the part of wisdom to guard society from the crimes, the vice, and the immorality of this degenerate class, who with their weak willpower and deficient judgment are easily influenced by evil?”
Over the years Letchworth established a relationship with the Eugenics Record Office at Cold Spring Harbor. Detailed background histories of incoming Letchworth children were taken and stored at the Cold Spring Harbor facility so families of Letchworth residents could be tracked. In addition to the collaborations with eugenicists of ERO, Letchworth allowed its residents to be used as experimental subjects. In the early 1950’s a hitherto untested live polio virus was injected into twenty “volunteers” at the institution.
In the annals of modern medicine, and in scientific literature, the name of Dr. George Jervis looms large. Jervis is credited with helping to develop an understanding of Phenylketonuria, a condition in which phenylalanine cannot be metabolized. Dr. Jervis was affiliated with Letchworth for many years. In 1947 he published a paper which describes the results of his research. In his paper, Dr. Jervis provides data on doses of phenylalanine, phenylpyruvic acid and L-tyrosine, which were administered to his research “subjects”. These “subjects” included: cats, rabbits, “normal” individuals and people affected by phenylketonuria. Dr. Jervis mentions in passing that some of the subjects were children and therefore were given reduced doses (because of reduced body mass) of the chemical. Not only did Dr. Jervis’ experiments require forced fasting and the administration of large doses of phenylalanine, but they also required multiple instances in which blood was drawn.
In none of the literature that describes Jervis’ research could I find reference to the ethics of his methodology. Generally he is heralded as a pioneer in the field of phenylketonuria.
At the top of his manuscript on phenylketonuria research Dr. Jervis identifies himself as being “From the Research Department, Letchworth Village, New York State Department of Health, Thiells”. Besides Polio and Phenylketonuria, the question has to arise in a critical observer: what was entailed in the research of that department and how many Letchworth “volunteers” were recruited as subjects?
In 2007 Rebecca Woolsey, a student at San Francisco City College, published a paper in which she details the influence of eugenicists on Letchworth Village. Although Letchworth Village had originally been envisioned as a low density residence in which no more than 70 people inhabited one dormitory, Ms. Woolsey describes living condition at the facility in which 125 children were crammed into one dormitory and some areas of the facility in which there were no beds at all.
Ms. Woolsey describes such deterioration of conditions in Letchworth that by 1978 30% of 110 Letchworth deaths investigated by the Coroner were deemed the result of over medication with psychotropic and sedative drugs.
When ABC television featured Geraldo River’s expose on Letchworth Village in the early 70’s, the conditions of the institution so shocked the public that a movement to close Letchworth was begun. Residents were gradually placed in other state facilities. By 1997 the last patient was moved out of the institution.
Today the grounds and buildings of Letchworth Village are essentially abandoned, though the site serves as a regional center of the New York State Office for People With Developmental Disabilities.
no place for rumors 