Just like the coronavirus, the 1918 flu pandemic ravaged group living facilities – The Boston Globe

As we are seeing now during the coronavirus pandemic, a combination of accidental and intentional failures exposed disabled inmates in institutions to the worst effects of the 1918 flu pandemic, which killed more 670,000 Americans and more than 50 million people worldwide. The lessons that could have been learned from the experiences a century ago are as forgotten as the people themselves; people who were trapped inside places like the Massachusetts School when the first sick patient was carted out and died in a small infirmary in September 1918.

State schools for the so-called feeble-minded were originally devised as small experimental settings. The goal of early reformers was to provide free education for people with cognitive and developmental disabilities. It was a radical notion. Opened in 1848, the Massachusetts School was the first public institution of its kind in America, and by 1918, there were roughly two dozen like it elsewhere in the country. But by then, much had changed.

In an effort to improve the health of the pupils, institutions began moving out of cities in the late 1800s. Superintendents, most of whom were physicians, not educators, had begun to recognize the benefits of fresh air and exercise, and at their urging, states spent lavishly, purchasing enormous parcels of land on which two- and three-story buildings could be situated at a distance from one another. With additional room came growth, and eventually these institutions housed permanent custodial populations in separate buildings from pupils.

Designed by famed architect William Preston the designer of the very first bungalow the Massachusetts School was one of the finest examples of disability accessible architecture in the world. The school moved from South Boston to Waltham in the late 1880s, and the campus featured state-of-the-art amenities like steam heat, electric light, and water-closets. Pupils slept in large ward rooms, divided by gender, with ample space between the beds.

However, as was the case elsewhere, the funding that states were willing to put into the institutions did not keep pace with needs as the institutions continued to grow. That growth was fueled by misapplications of science, medicine, and testing much of it false which were used to demonize people with disabilities. Institutions were packed with people deemed undesirable. Chronic overcrowding became the norm. The beds were pushed together. Then people slept on floors, in hallways, and in dining halls. Families were discouraged from visiting.

By 1918, with the Massachusetts School leading the way, state schools for the feeble-minded were no longer small or experimental. They housed tens of thousands of people, young and old. People who failed IQ tests or came from poor families. People with cerebral palsy and Down syndrome. Most of them undesirable and all of them in the institution for life.

With the outbreak of World War I, staffing at institutions dropped precipitously. The Massachusetts School had 124 vacancies. The superintendent, Walter Fernald, even sent residents of the institution to serve in the Army to reduce the number of inmates. When the viral outbreak hit, he was not even there. He was out of state, caring for his adult son who was sick with the flu, and would ultimately die.

With doctors still uncertain about even the most fundamental aspects of transmission, infection, and treatment, the disease arrived at the school on September 17 and swept through the crowded wards. Over the next six weeks, patients who were already vulnerable, succumbed, one after another. While the infection rate is estimated to have been 25 percent of the general population, 778 of the 1,600 inmates at the Massachusetts School fell ill.

In one building alone, only 15 of the 189 inmates came through without having caught the flu. Five people were responsible for caring for all of them. With an ailing and diminished staff, the institution turned to the inmates to act as nurses for one another. When the outbreak was done, more than 88 inmates had died, 5.5 percent of the population of the school and more than eight times the mortality rate in the rest of Waltham. Communal bathrooms, crowded and shared living conditions, linked ventilation, and understaffing had hastened the viruss spread and devastated the school.

The Massachusetts School was not alone. The mortality rate at the Wisconsin Home for the Feeble-minded in Chippewa Falls, Wis., was between 4 and 10 percent. There are two reasons for the lack of precision in the data. Like the new coronavirus, little was actually known about fundamental aspects of the disease, and also, nobody cared much to measure its impact on the types of people locked inside.

The same is true today. This week, more than a month into the outbreak in the United States, the CDC was still considering whether or not to keep a separate tally of institutional deaths, even though the same conditions from a century ago have ensured that facilities today are just as dangerous.

In the wake of the 1918 pandemic, institutions weighed what to do. Like many of his colleagues, the superintendent of the Wisconsin School, A.L. Beier, obfuscated what had happened by praising the efforts of the employees in heroic language, rather than as the victims of underfunding and poor planning that they were. Then he downplayed the deaths, and tried to move on.

Looking back in 1920 on deaths at the institution over the previous two years he casually wrote, The mortality rate is somewhat higher than any previous biennial death rate, but if the deaths that were due to influenza were excluded, the rate compares favorably with that of the preceding biennial period. In 1918, deaths from influenza and related respiratory illnesses accounted for more than half the deaths at the institution.

The only change Beier suggested was the construction of a modest quarantine space that could double as a welcome and receiving area for future inmates and their families when there wasnt a quarantine in effect.

Elsewhere there was a similar agreement to look forward rather than make changes to institutional settings. Americans moved forward by looking upon people with disabilities with growing resentment. Eugenics paved the way. Many people felt that healthy young men had gone off to die in the war, depriving America of a generation of their healthy offspring. What we were left with was a degenerate stock of people who were unwanted.

While Fernald was, in the years following the war, avowedly opposed to eugenics, others were not. Their ideas would ultimately make their way into Congress in the form of anti-immigrant laws, then to the Supreme Court and the infamous Buck v. Bell decision that allowed for the sterilization of people with disabilities. Later, it led to genocide in the Holocaust.

Meanwhile, epidemics continued at institutions until the late 1960s, when disability rights activists began pushing for deinstitutionalization and the creation of Centers for Independent Living. When Nobel Laureate John Enders wanted to test the first successful measles vaccine in 1960, he ran the trial at the Massachusetts School (then re-named the Walter E. Fernald State School) because it was one of the last places in Massachusetts with outbreaks.

Former residents describe the same era as one in which there were consistent lockdowns for yellow jaundice a phrase for hepatitis which ran through the wards. Little was done because leaders refused to accept that institutions could be modified or funded in ways that would end the constant threat of outbreaks. Those modifications included moving away from the use of large buildings, reducing patient populations, increasing staffing, coordinating with state oversight agencies, and creating day-to-day mechanisms for accountability to families. A minority of experienced people suggested something radical that society refused to accept: no long-term care institutions of any kind.

The risk that we will come out of todays pandemic without being open to enacting substantive change is as high as it was in 1918. One difference may be that large numbers of disabled people live outside institutions and are fighting present-day eugenic impulses to cast them aside as undeserving of equipment they need to survive in the interest of saving the coronavirus victims who have been deemed more viable in the long-term.

If we emerge from this crisis without a commitment to dramatically transforming these mindsets, which allow us to segregate and victimize our most vulnerable citizens, we will continue to sacrifice them in every emergency we face. The warning signs come from the fact that the circumstances we see today are so distinctly similar to those of a century ago, howling at us past and present to recognize what does not, and what has not worked.

Alex Green is an adjunct lecturer in public policy at the Harvard Kennedy School and teaches disability history at Gann Academy.

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Just like the coronavirus, the 1918 flu pandemic ravaged group living facilities - The Boston Globe