by Myrna Martin
April 4, 2024

The second Historical Horizons lecture of the semester, The Cautionary Tale of Encephalitis Lethargica: Epidemic Disease and Historical Memory” by Jess Maxfield, was held on Wednesday, March 6. As this was my second Historical Horizons lecture event, I was more familiar with what to expect. But I am always left with more, and it always pleasantly surprises me. Once again, an extra credit assignment for me turned into a plethora of knowledge being shared and learned!

This lecture was opened by Michael Gosselin, Associate Professor of English here at GCC. He is also the co-advisor of the History Club. He announced the next two upcoming lectures with Professor Derek Maxfield and Victor Vignola, and warmly welcomed Jess Maxfield to the podium. She has earned a Bachelor’s Degree from Adelphi University in English and Communications, and she has earned two Master’s Degrees from the University at Buffalo, one in Library Science, and one in History. She has also published an article called “Reckoning with the General: Sherman in American Memory” in the book Man of Fire by Derek Maxfield.

Jess Maxfield started off her lecture by going back to the year 1930 and introducing an 8-year-old named Catherine. Catherine was included in a psychiatric experiment by Dr. Earl Bond and Dr. Kenneth Appel at the Pennsylvania Hospital in Philadelphia where 65 other children along with Catherine attended the Franklin School. This school was closely monitored by the Department of Mental Health and Nervous Diseases. Of the 65 children at the school, 48 had been diagnosed with behavioral problems following Encephalitis Lethargica. Catherine was given a very strict and regimented schedule. Her schedule was broken up into hours, and every hour hospital staff monitored her. The staff considered her to be the most restless and impulsive of all the children. Every action was recorded including her social interactions with peers, speech patterns, emotions, and also her dreams. No part of this child’s waking moments or sleeping moments were left undocumented. These children were expected to conform to the “standard norm” of appropriate societal behaviors, despite their illness.

In this specific school setting, Catherine and the other children were considered to be post encephalic and delinquent. “For Catherine and the other children in the Franklin School setting, the condition of being identified as post encephalic and delinquent was used by researchers to psychiatrize their condition, moralize their behavior, and appropriate their stories to meet their own needs.” Maxfield further explained that “Psychiatric effects were used to further the ‘mental hygiene’ paradigm where children’s behavior needed correction, so instead of a focus on reorganizing the impact of the disease and providing support, the focus was on ‘re-educating’ the children.” She further explained that most of the Encephalitis Lethargica cases were not psychiatric, but were neurological.

From her lecture I gained understanding that this disease was misunderstood at the time, and due to the political nature within the medical society, the focus on helping those who were ill got lost. Neurologists and psychiatrists were fighting for dominance. Who would get the funding? And how would these departments “justify” the need to keep the money coming in. Who would get the accolades? The people who were ill with this disease, if they did not die first, lived with labels and the stigma of the disease. Medical Authorities eventually lost sight of this disease.

This disease was an epidemic that impacted hundreds of thousands of individuals of all ages. It was also influenced by “the Mental Health Hygiene Movement and the Progressive Era shift towards scientific authority and professionalization.” Maxfield explained that Encephalitis Lethargica “rose to prominence as a major public health concern” in the early 20th century. An Austrian neurologist and psychiatrist, Constantin Alexander von Economo, identified it in 1917. From 1917 until the 1930’s it seemed people were interested in it. Some forms of this disease reached an estimated 5 million people worldwide. Three types of this disease were identified by Von Economo, and because he did that, they used those as early detection/diagnostic efforts. Patients would become very tired (excessive sleepiness), and if they did not die of respiratory failure, they would suffer from minor to excessive “Parkinsonian” paralysis. Muscle pain was often stated, and they would sleep for days to months at a time, and it was not a peaceful, comforting sleep. Their muscles would become rigid and painful, and if they developed a fever, most likely 50 percent of these people would die. Because of the sleepiness of this disease, it was also called “sleeping sickness.” Also, if people did not get the “tired version” of this disease, they got the opposite – acute bouts of insomnia and involuntary movements. Long-term effects of the disease often manifested as behavioral problems in children.

But even so, not enough attention was being paid to the children afflicted with this disease. When psychiatrists realized their reputations would benefit and it would validate the discipline of psychiatry, they worked to influence parents and educators in regards to treating behavioral issues. During this lecture, Ms. Maxfield told a story of a young girl who was about 16 years old. She was reported as being well mannered and polite, but then began to have behavioral issues so bad she would fly into rages. She eventually plucked out both of her eyes. This disease did not seem to follow a parameter that could be easily diagnosed as it mirrored other illnesses as well. Unfortunately, no cure was ever found. So many questions arose from this disease that it became a debate amongst medical authorities in every discipline. As Jess stated, “Encephalitis lethargica followed a generalized disillusionment with what the neurologist and researcher Paul Foley called the ‘optimism of biological psychiatry,’ which promised biological explanations for disorders of the brain.”

With the industrial revolution advancing the development of technology, it allowed scientists to investigate the structure and function of the brain. Encephalitis was a disease in which “the mind was intact, but the brain was not.” Ms. Maxfield said, “Sociologist Adam Rafalovich mentions that medical professionals have historically named Encephalitis Lethargica as a precursor to diagnostic criteria that was used to develop what would become known as the ADHD diagnosis among others.” Maxfield would also mention that Rafalovich would stress the historical context of the disease and disorders as the only way they could be understood. Ms. Maxfield said, “To normal children under the mental hygiene paradigm, the Pennsylvania Hospital experiment constructed a new normal based on the basis of disability. It included children recovering from encephalitis, and excluded children who were unlikely to recover. This new normal served as a rhetorical marker that allowed greater access to treatment for some individuals but changed at the expense of those who did not fit the new criteria. Those receiving treatment had to navigate a rhetorical space where the bodies and minds were medicalized and moralized.”

And what is the cautionary tale of this? Ms. Maxfield explained, “The significance of this is not that Encephalitis Lethargica serves as a cautionary tale in terms of preventing illness. The caution is on everyone for how we treat the survivors of that illness and continue to care for them through the long term effects of their disease rather than allowing them to fade into memory.”

As her lecture was coming to a close Ms. Maxfield mentioned a disability historian by the name of Catherine Kudlick. Kudlick stated, “When it comes to epidemics it is vitally important to look at the experience of the survivors, not necessarily to avoid their fate as disabled people, but to understand how their lives continued. How they shaped and rebuilt policies around their needs and how their experiences changed stigma and discrimination towards disabled people.” Maxfield summarized by saying, “Encephalitis Lethargica has been positioned by medical historians as a lesson from history we can use to understand modern epidemic diseases. It is vital that we look to the stories of the survivors, so we do not repeat the ways in which they were failed by society and to do justice for disabled people in the present.”