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Patients’ Writing about an Urban Disease: The Polio Narratives

Amy Fairchild, PhD, MPH | SMS Core Course

Objectives

•Social construction of disease•View the individual response to disease as a product of the specific social context

•Culture, structure, and the problem of agency

•Primary document analysis•Illness narratives

•Photographs

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Click here to view movie clipFDR Walking

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1920s 1930s 1940s 1960s 1970s 1980s 1990sParalyzed by polioGovernor of NYSPresident of USMarch of Dimes

1950s

FDR Dies

Successful Trials of Salk Vaccine

Click tohearaudioclip.

Click to hearaudio clip.

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1920s 1930s 1940s 1960s 1970s 1980s 1990sParalyzed by polioGovernor of NYSPresident of USMarch of Dimes

1950s

FDR Dies

Successful Trials of Salk Vaccine

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Successful Trials of Salk Vaccine

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Cold War Era

1947 Marshall Plan1949Soviets test the bomb

NATO1950 Korean War

McCarthy1953 Rosenbergs1959 Castro

Civil Rights Era

1954 Brown v Broad of Education1955 Montgomery Bus Boycott1961 Freedom Rides1963 March on Washington1964 Civil Rights Act1965 Voting Rights Act

US Troops in VietnamGriswold v Connecticut

1966 Medicaid

[To attach to Kriegel quote on FDR]

Women echoed the statements of men on FDR:

Elaine Strauss, for example, was paralyzed as a young wife and mother at age 29 in 1945—right on the heels of FDR’s death. Over three decades later, she still wrote that “Knowing how far FDR had come in overcoming his bout with infantile paralysis made me aware of great possibilities.”

[To attach to Kriegel quote on FDR]

Women echoed the statements of men on FDR:

Dorothea Nudelman explained that FDR “inspired me” and “soothed my fear” as a child with polio. As a middle-aged adult learning, for the first time, to cope with the effects of polio in her childhood, Nudelman continued subtly to invoke the President: “I saw that fear crippled everyone in some way.” Throughout her book she plays on the theme that “the only thing we have to fear is fear itself.”

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Click to see movie clip

I Was a New Deal Kid

Click to see movie clip

Berkeley Graduate from Breathing

Lessons

Core Elements of FDR Myth

• Myth of medical expertise or authority

• Myth of imminent recovery

• Myth of graceful empowerment

Women sounded the same themes of rebellion against being a good patient:

One young woman, for example, who was an aspiring young playwright and who had been a junior executive at a Chicago mail -order house before polio struck her, proudly recalled that her hospital behavior (wiener roasts in the rooms of fellow convalescents, refusals to heed the occupational therapist’s requests to make a stuffed teddy bear, and an elaborate, forbidden Thanksgiving dinner with her family in her hospital room) provoked repeated threats to send her to the hospital psychiatrist in 1944. Some, to be sure, endeavored to be good patients and, perhaps, succeeded, but most who strove to be “model patients” were typically marked by physicians or nurses as exhibiting “unhealthy” attitudes and a “willful and stubborn” nature.

[Attach to Kriegel quote on wheelchair invasion]

In addition to theme of rebellion against medicine, both men and women saw the patient as expert:

Jane Needham—paralyzed as a young mother in Arizona in the 1940s—described “my patient, Dick Miller, who was also in an iron lung. I call him my patient, because I do think he might have died without me. … His nurses, although conscientious and willing, were as unskilled as mine had been at first. I can honestly say that I helped to train them how to take care of Dick. They came to me with their problems and I usually had an answer, whether it was mechanical trouble in the lung or how to make him more comfortable. ‘His collar must be leaking,’ I’d say, or, ‘Try putting up the pressure.’ ‘Try the hot pads again.’ ‘Put a rolled-up towel under his heels.’ Doc Needham they called me, and it helped me to help him.”

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[attach to Kriegel photo]

Women sounded same themes of rebellion against being a good patient:

Bea Wright promised to be a “model patient,” but this local organizer for the National Foundation for Infantile Paralysis and single mother of two boys consistently disregarded medical advice to rest. More seriously, she refused to accept the diagnosis that she would never walk again—an “unhealthy” attitude marking her as a “willful and stubborn” patient.

[Attach to Kriegel quote on wheelchair invasion]

Women sounded same themes of rebellion against being a good patient:

Regina Woods, a working class teenager who would live a long life in either an iron lung or dependent on artificial ventilation, wrote that some doctors would “insist that I be only what they want me to be, an easily pliable ‘patient’ who asks no questions and has implicit trust in their every decision. … Some want me to be a docile, undemanding patient, content to sit in front of a TV and vegetate. After all, they gave me a bath, didn’t they? What more could I expect?” Woods, nonetheless, took great pride “the thoroughly obnoxious ‘patient’ that I came to be.”

[Attach to Sternburg slide]

Women did not simply transcend disability, but they were much less likely to express anger or hostility.

Regina Woods—totally paralyzed as a teenager—thought that polio would not radically change her life because she had aspired only to be a “hobo, mari ne, or lady wrestler.” “I believed that the only real changes would be physical and that the rest of me—my mental, emotional, spiritual character—would be untouched by the enormous bodily changes that had taken place with such suddenness and finality.” In fact, “every part of my being was touched and every emotion was forever changed.” Crying might produce nausea or secretions that made breathing difficult and set the stage for dangerous respiratory infections, forcing an unromantic choice between emotion and physical comfort: “I often chose the latter option and have spent much of my life teaching myself that emotion should not be allowed to take control of my life. … This is not something that I like, but it is something that I must deal with as best I can.”

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Click to see movie clip

Mrs. Garciafrom Breathing

Lessons

Core Elements of FDR Myth

• Myth of medical expertise or authority

• Myth of imminent recovery

Click to see movie clip

Berkeleyfrom Breathing

Lessons

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Click to hearaudio clip.

Core Elements of FDR Myth

• Myth of medical expertise or authority

• Myth of imminent recovery

• Myth of graceful empowerment

Click to see movie clip

Lovablefrom Breathing

Lessons

Click to see movie clip

Rocking

Click to hearaudio clip.

Click to see movie clip

Apartmentfrom Breathing

Lessons

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