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Leprosy, Domesticity, and Patient Protest: The Social Context of a Patients' Rights Movement in Mid-Century America

11 Jul 2006-Journal of Social History (Oxford University Press)-Vol. 39, Iss: 4, pp 1011-1043
TL;DR: The patient struggle for autonomy at the US Public Health Service Hospital in Carville, Louisiana, in particular, must be located in the postwar period as discussed by the authors, and the conflict between patients and hospital administrators over control of institutional life in the 1950s exposes tension between Carville as home and as hospital.
Abstract: Historians strongly associate the 1960s as marking the beginnings of radical changes in patients' orientation toward their rights. Yet the social and political context of the decades prior to the Second World War distinctly shaped the patient experience in much the same fashion that it gave form to the Civil Rights Movement. The patient struggle for autonomy at the US Public Health Service Hospital in Carville, Louisiana, in particular, must be located in the postwar period. Against the backdrop of how the institution was organized and administered from the 1920s to the 1930s, I focus in this paper on the conflict between patients and hospital administrators over control of institutional life in the 1950s. Their encounters exposed tension between Carville as home and as hospital. Given this focus, the patient challenge to the institutions, which reached a national audience, began to coalesce around the home in general and the kitchen in particular, mirroring the growing prominence of the political dimensions of suburban domesticity as a powerful democratic ideal. At Carville, the private "surburban" home represented freedom from the state.

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LEPROSY, DOMESTICITY, AND PATIENT PROTEST:
THE SOCIAL CONTEXT OF A PATIENTS’ RIGHTS
MOVEMENT IN MID-CENTURY AMERICA
By Amy L. Fairchild Columbia University
Historians typically regard the patient’s rights movement as a product of a host
of social and political changes in the 1960s, including the civil rights and other
movements centered on individual rights. But in fact, the social context and
broader political ideas of the 1940s and 1950s that gave rise to, shaped, and
constrained the civil rights movement also influenced the patient experience.
1
During this period, patients with leprosy confined at the United States Public
Health Service (PHS) Hospital No. 66 in Carville, Louisiana twice challenged
and changed the terms of their confinement.
2
They did so at the apex of medical
authority in America.
3
Recounting the all but forgotten history of these events
provides an opportunity for deepening our understanding of the far broader chal-
lenges to medical power and authority that would occur decades later.
Leprosy—a highly stigmatized disease that patients preferred to refer to by its
more technical nomenclature, Hansen’s disease, or, more cryptically, as “this
package” or, in Cajun, as la maladie que tu nom pas (the disease you do not
name)—
4
affected only an estimated 1,500 to 5,000 people in the US. The pa-
tient census at Carville ranged between 200 and 400 individuals from the 1920s
through the 1960s.
5
On the surface, leprosy was a disease touching few, Carville
a small and seemingly unimportant institution that stood apart from any broader
story about America in the war and postwar period. But those confined created
a community in which they articled their own version of American political,
suburban, and domestic culture as they sought to gain control over the private
sphere. A major societal change revolving around suburban domestic life was
expressed in this unlikely setting controlled by science and the State. Through
the lens of Carville, we can elaborate on the social and political changes that
gave rise to and shaped patient resistance to scientific authority in an unlikely
place and time.
I focus in this paper on the conflict between patients and hospital administra-
tors over the organization and control of institutional life in the 1950s. But this
analysis must be set against the backdrop of how the institution was organized
and administered from the 1920s to the 1930s, which I describe in the first sec-
tion of the paper. Carville stood at the crossroads of subjugation and freedom:
despite the existence of institutionally unprecedented housing arrangements,
because of the reality of compulsory confinement it was too hospital-like to be a
home; despite its penal features, because of the unusual autonomy the patients
enjoyed, it was too home-like to be a hospital.
6
In the second section, I discuss the ways in which the therapeutic advances
achieved during the 1940s prompted the PHS hospital administration to press
for a stricter institutional culture and the ways in which broader societal changes
enabled the patients not only to push back but also to build more of a private

1012 journal of social history summer 2006
home life within the institution. This, then, sets the stage for the third section
of the paper, where I analyze the PHS attempt to swing the pendulum deci-
sively toward institutionalization in the 1950s. As it fought to reassert control
over the patient population, it attacked the domestic life that patients had con-
structed within the confines of Carville. In this final, pitched battle, the private
suburban home and the freedom from the State that it symbolized became the
battleground for the struggle between patients and medical administrators.
The Institutional Context: Carville in the 1920s and 1930s
Like many “modern” sanitariums, the Carville leprosarium was constructed
on a plan in which 12 patient dormitory buildings surrounded a nucleus of
hospital, dining, and administration buildings, all overseen by a Medical Of-
ficer in Charge (MOC) and his staff of physicians, civil servants, and employ-
ees from local communities.
7
This paternalistic, hierarchical, and quasi-military
medical structure mirrored the broader medical culture; it also resonated par-
ticularly with the local culture in which the plantation continued to shape
social relationships, creating stark power differentials between elites and their
communities.
8
But despite the legacies of slavery and discrimination, this unique southern
state gave a particular form to the experience of disease-based segregation. Even
in the twentieth century, considerable racial mixture and Creole ancestry—
a product of early French and Spanish colonization and robust African slave
culture—worked to conjoin blacks and whites to some extent; a remarkable host
of ethnic cultures flourished, particularly in the southern region from New Or-
leans up through Carville and Baton Rouge.
9
Although the state was predom-
inantly white, it continued to have one of the largest foreign-born populations
in the South, which would shape the experience at Carville.
The Carville population was up to 40 percent foreign-born—with most com-
ing from Mexico, China, and the Philippines; two thirds of all patients were
female.
10
A little less than 10 percent of the patients were Black, and while
the patient dormitories were racially segregated,
11
the school was not and pa-
tients proudly described a long history of institutional integration. Indeed, they
claimed that “segregation was more or less discouraged.”
12
For example, one
African American man, Ernest Dennis, Jr., who came to Carville as a child
in the 1940s, perhaps as late as 1950, explained that “I wasn’t subjected to a
lot of things that Negroes are subject to outside. But when I left for four years
between ages 12 and 16, it was different. Then, I had to go to an all-colored
school which was a change from the integrated school here.” He continues on
to describe experiences of discrimination that were completely foreign to him.
After readmission to Carville, Ernest was elected as President of the Patients
Federation.
13
Less religious diversity prevailed at Carville. Three quarters of the patients
were Catholic. While most of the rest were Protestant, there were always sev-
eral Jews in the patient body. Social class did not necessarily shield individuals
from confinement and so patients came from a variety of economic and social
backgrounds. Unlike its counterpart on the remote island of Molokai in Hawaii,
where leprosy was clearly viewed as a “tropical” disease and its carriers as “racial”

LEPROSY, DOMESTICITY, AND PATIENT PROTEST 1013
others, those at Carville were always regarded as (and with rare exceptions were)
American citizens.
14
But if the need to isolate and stigmatize those with leprosy may have reflected
racial assumptions that ran so deep that they remain impossible to analyze based
on existing source materials, it also reflected both scientific and popular beliefs
that the disease was highly communicable. Then, as now, leprosy’s mode of trans-
mission was something of a mystery, but it is currently understood to be a fee-
bly communicable chronic bacterial infection typically acquired after prolonged
childhood exposure in the roughly 10 percent of the population who are suscep-
tible. Thus, while the children of those with leprosy were the most likely to
become infected because of prolonged exposure during a period of heightened
susceptibility, spouses were only rarely infected. If left untreated, the bacteria
might invade an infected individual’s peripheral nerves, skin, upper respiratory
tract, and eyes over a period of years or decades. In some people, the disease
manifested itself only as rose colored, insensitive patches of skin. In others, it
resulted in blindness, disfiguring skin lesions, and deterioration of the bones and
cartilage of fingers, toes, ears, and noses, creating the widespread misconception
that leprosy caused pieces of the body to rot away and drop off.
15
The authoritarian nature of medicine and public health combined with uncer-
tainty about transmission as well as terrible, possibly racial but decidedly Biblical
stigmas associated with the disease to reinforce a set of humiliating rules, estab-
lished in 1921 when the PHS took over administration of the hospital. These
rules stripped all inmates—regardless of race, religion, class, or status—of basic
rights.
16
Patients had no telephone. While there was a phone on the “other side”
of the privet hedge separating the facilities of the medical personnel and staff,
patients were prohibited from using it. If patients needed to make an emergency
phone call, they either had to ask a favor of a staff member or abscond and hire
an expensive taxi to take them to Baton Rouge and back—all at the risk of being
caught and punished. In a state that had one of the most impressive highway sys-
tems in the nation by the end of Huey Long’s administration in 1935, there was,
by design, no paved road leading to Carville. While short vacations were permit-
ted to 10 patients at any one time—a source of heartbreak at Christmas—they
could only travel with the permission of the state health officers at their desti-
nations and had to avoid all public transportation.
17
Only patients from Texas,
Louisiana, and Mississippi could travel home at all.
18
Finally, though they were
US citizens, as they were not necessarily considered local residents, the State of
Louisiana denied them the vote.
There was no effective treatment for leprosy prior to the early 1940s and those
confined could expect to spend decades of their lives in this federal institution.
19
But for all its penal features and demeaning rules, Carville was not a “total” or
“closed” institution.
20
Although the facility was surrounded by a high barbed
wire fence with a 24-hour guard, patients regularly “went through the hole in
the fence” to hunt or for little jaunts into nearby Baton Rouge. Others simply es-
caped when they had had enough confinement or when they felt well enough to
try making it on the outside. To be sure, the police would attempt to apprehend
escapees, but it was a nearly impossible task given that almost no one provided
the institution with his or her correct name or address upon admission.
21
The
staff fully expected and even encouraged such subterfuge given the great stigma

1014 journal of social history summer 2006
attached to leprosy.
22
While a few individuals had to be brought to Carville in
handcuffs, most came “voluntarily” upon the threat that they would be reported
(or the fact that they had been reported) to the health or police departments.
Others came out of fear that they might “[infect] the whole city.”
23
Still oth-
ers entered Carville when deformities caused by the disease could not longer be
concealed.
24
Granting patients anonymity was a means of winning their trust
and cooperation.
Isolation, as already noted, was not absolute. Patients were granted yearly
leave if they came from selected nearby states and, although the facility was dif-
ficult to access, families and even friends could visit regularly. Particularly during
the 1940s, as Carville received national publicity (almost exclusively thanks to
the tireless efforts of the patients themselves to demystify leprosy), the institu-
tion became a kind of tourist attraction. Curious Americans from all over the
nation paid visits to Carville and received patient-guided tours of the grounds,
sometimes leading to the formation of fast friendships. They might attend a base-
ball game between the Carville team and one of the local leagues, a tournament
on the patients’ nine hole golf course, or even a dance—big events, often featur-
ing a band from New Orleans. Such social events, organized with the assistance
of family or friends, attracted not only patients but also staff and locals.
While each incoming patient was assigned a room in one of the men’s or
women’s dormitories, as they made friends patients could negotiate for new
placements. In some instances an entire dormitory building, which contained
12 private rooms and one communal bath on each floor, was occupied by mutual
friends.
25
Each “house” developed its own particular character over time, much
like a sorority or fraternity. Some had a reputation for trouble-making, others
for hospitality, still others for a particular ethnic membership.
A handful of patients abandoned the dormitories altogether. Reflecting the
“self-built suburbs” phenomenon that began to characterize private housing con-
struction, often on a mail-order basis, in the second and even third decades of the
twentieth century, Carville patients constructed cottages at the back of the 361
acre property as early as the 1920s.
26
Some were merely chicken coops, hunting
lodges, or other types of shanties that patients had erected or converted, os-
tensibly with the permission of the MOC.
27
Others were substantial structures.
By the mid-1930s, motivated patients had built a dozen frame homes with hot
and cold water, gas, electricity, and sewage. They sometimes purchased materi-
als with their own money and sometimes just collected enough materials, like
discarded sinks or toilets, by scrounging through the institution’s dump. If the
patient could make the connections, the PHS would donate the water, electric-
ity, and gas. Some of these structures were suitable for year-round living, others
for occupation only during the summer months or only as a retreat during the
day. When they either became too infirm to reside in the cottages or left Carville
after obtaining a medical discharge—achieved by running negative blood tests
for the Hansen’s bacillus for 12 consecutive months—those owning the cottages
might rent or sell them to another patient.
The cottages completed the little community, which, by the 1920s, held with-
in “its confines
: : :
churches, shops, a theater, a morgue, the little cemetery, even
a jail. Operating inside its fences [were] all the activities of a tiny city.”
28
The
extent to which patients exerted autonomy in the organization of their personal

LEPROSY, DOMESTICITY, AND PATIENT PROTEST 1015
and community lives was remarkable in an era of medical paternalism and def-
erence to scientific authority.
29
Building Carville’s Suburbs: Therapeutics and Social Transformation in the
1940s
Prior to the early 1940s, the sole treatment for leprosy was Chaulmoogra oil—
a foul smelling and largely ineffective tree extract that patients could opt to take
either orally (at the price of extreme nausea) or by injection (at the risk of de-
veloping painful local abcesses). Just a year before the attack on Pearl Harbor,
Dr. Guy Faget took command as MOC. Less of an administrator and more of
a bench scientist than his predecessors, Faget brought Carville into a new era
of therapeutic experimentation. First on his agenda were trials with diphthe-
ria antitoxin.
30
In 1941 and 1942, experiments with sulfa drugs began. In 1941,
Faget also began trials with a new class of sulfones.
31
The sulfones—first Promin
and then Diasone—resulted in marked improvement in early cases within sev-
eral months; within two to three years many patients were being discharged as
bacteriologically negative.
32
In a climate of medical triumph, Dr. Faget would begin to stress the impor-
tance of patient compliance in a series of articles, which appeared monthly from
August 1942 to May 1943 in the patient newspaper: “The greatest cooperation of
the patient with his physician is most conducive to a happy outcome
: : : :
[I]f he
does not conscientiously follow medical advice and avoid conduct detrimental
to his physical condition, he is obstructing his progress towards improvement.”
Indeed, the MOC cautioned, ‘The surly bird catches the germ.’ Thus, with-
out imposing any hard and fast rules, Faget expressed a new desire to regiment
the sleeping patterns, recreation, and meal consumption of patients—all toward
the end of arresting their disease in “the modern leprosarium.”
33
The effort to extend medical control to meals carried particular significance.
As one inmate observed, “There has always been an exaggerated interest in food
in Carville. Many patients look[ed] no further ahead than the next meal. Once
eaten, its merits or demerits [were] endlessly discussed until it [was] time for
the next one.” The cafeteria food had always been a source of bitter complaints
amongst the patients, not only because of its quality but also because of the regi-
mentation the dining schedule imposed on their lives. The institutional evening
meal, for instance, was truly an early-bird special, served at 4:00. Since the late
nineteenth century, people had begun to eat dinner later and later, particularly
for meals viewed as entertainment. New Yorkers, for example, dined at around
7:00—and that was early by national standards.
34
Thus there was a long tradition of patients preparing their own meals in the
dorms or cottages. The ability to eat later, “at a civilized hour,” represented more
than convenience or reprieve from culinary oppression. It gave patients who had
every reason to expect that they might well never leave Carville a modicum of
relief from institutional life: “For a little while every evening we almost forgot
Hansen’s bacillus.”
35
But meal preparation and consumption also had meanings
firmly rooted in wider regional and national culture.
Despite its declining importance in the 1920s and 1930s, meal cooking had
survived the age of mass production and consumption to remain “the central rit-

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References
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Frequently Asked Questions (15)
Q1. What was the effect of the sulfones on the patients’ hope for recovery?

While the sulfones initially heightened the patients’ sense of reaping the benefits of a paternalistic Welfare State that provided for the needs of the most vulnerable, patients’ hope for recovery also interacted with changing notions of the rights and obligations of citizenship, deepening a sense of autonomy and instilling a new willingness to challenge and critique. 

120 The ultimate success of the patient effort to regain their housing reflected the triumph of domesticity as a social and political ideology in the larger 1950s society. 

By the 1960s, while the Cold War intensified, the McCarthy era and limits on the ability to sharply critique America and its political ideology came to an end. 

The effort to democratize medicine and the institution was a critical precursor to efforts to achieve freedom from its authority. 

The war witnessed the beginnings of what George Lipsitz calls “a fundamental revolution in economic, social, and cultural life.”43 A new articulation of the idea of freedom was the thread tying these transformations together. 

As the Cold War, in general, and the spirit of intolerance epitomized by the inquiries of the House Un-American Activities Committee (HUAC) and Senator Joseph McCarthy, in particular, began to grip national and domestic politics, the space for protest and dissent would become decidedly more cramped. 

Leprosy is now typically cured with multiple drug therapy (some combination of rifampicin, clofazimine and dapsone) administered for six to 12 months, sometimes longer. 

”132 The forces that gave birth to such changes provided the context for and were in turn energized by the new bioethics, which had as its lodestar a commitment to patient autonomy and a rejection of medical paternalism. 

When Betty and Harry were medically released in 1946, for example, Betty sold stockings door to door when times were particularly hard (though her primary occupation was writing her memoir of Carville). 

If patients needed to make an emergency phone call, they either had to ask a favor of a staff member or abscond and hire an expensive taxi to take them to Baton Rouge and back—all at the risk of being caught and punished. 

In 1969, for example, the Boston Women’s Health Collective, in their enduring classic work of self-assertion, Their Bodies, Ourselves, sought to shatter the “myth” that doctor and patient “meet one another as parent and child.” 

Patients accepted the new policy not only because it came at a moment of change at Carville, when more and more patients were being discharged and the community was fragmenting, but also because the new MOC acknowledged and included them in decision-making. 

”28 The extent to which patients exerted autonomy in the organization of their personaland community lives was remarkable in an era of medical paternalism and deference to scientific authority. 

The cafeteria food had always been a source of bitter complaints amongst the patients, not only because of its quality but also because of the regimentation the dining schedule imposed on their lives. 

indeed, that suburban domesticity became of such paramount importance suggests that it may not have been simply isolation and protection from the PHS authorities that patients sought but perhaps a kind of segregation within the institution as well.