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The ZenKanKyo and the Patients’ Federation: A Comparative Study

Janet E. Frantz, University of Louisiana at Lafayette Hajime Sato, University of Tokyo

Prepared for submission to the Southern Political Science Association Annual Meeting New Orleans, Louisiana

January 8, 2005

Special appreciation is given to support from the University of Tokyo, the Japanese government, the University of Louisiana at Lafayette, and to the Social Science Research Council for support of this research.

Introduction The United States (1921) and Japan (1931) implemented mandatory segregation as the method of dealing with Hansen’s Disease (more commonly known as leprosy). In the U.S., the policy was not formally abandoned until 1985 and the institution which housed victims still is home to some two dozen remaining patients. In Japan the Diet did not revoke mandatory segregation until 1996 and several thousand elderly leprosy victims continue to reside at government facilities. These segregation policies, questionable from the onset, persisted despite the development in the late 1940s of effective out-patient treatments for HD victims and increasingly powerful evidence by mid-century that the disease was but mildly contagious.1 Patients’ groups organized within the leprosaria in both nations soon after the respective policies were adopted and by mid-century each had launched multifaceted efforts to improve life in the sanatoria and to end mandatory segregation. Both organizations, separated by geography and planted within significantly different political systems, shared goals and challenges. This paper assembles data on the two groups and analyzes that data to better understand the role that interest groups like this play in the making and unmaking of public policy. The literature of political science offers broad theories and conceptualizations about interest groups and their impact. The first portion of the paper addresses the most relevant of that literature. The second part of the paper presents the narrative of these two organizations, ZenKanKyo (Japan) (ZKK) and the Patient’s Federation (U.S.) (PF) and provides considerable evidence to tie these cases to the broader literature. The paper finally draws together the threads of the two stories to demonstrate similar mobilization patterns, similar strategic plans, and
1

There are several good examinations of leprosy policy in both countries. Outline those

here.

similar successes in demanding improved living conditions and similar failures in demanding transcendent or human rights. Interest Group Literature Despite the passage of more than a half a century, David Truman’s The Governmental Process lies at the heart of interest group theorizing. Truman describes a relationship between government and interest groups that has come to be known as pluralism. The argument is as follows The United States is a large and diverse nation with many different kinds of people holding many different values. The pursuit of these diverse values often occurs through the medium of interest groups which contend against one another for the influence and power to gain their values. The competition among so many groups moderates the claims and counterclaims by forcing compromise and bargaining. It disciplines the groups thereby and they adjust and adapt to one another. If any sector of society is aggrieved, it may organize and seek redress through the bargaining among groups. Freedom for each group is thus maximized, goals are moderated, and social consensus is promoted. (Salisbury, 2). Pluralism, in short, then is based on the idea that “the behaviors that constitute the process of government cannot be adequately understood apart from the groups . . .” (Truman, 502). Truman, while basing his theory on predominantly U.S. observations held, from the beginning that “The political activities of organized groups are not, moreover, a peculiarly American phenomena.......Their activities are visible in every country where freedom of association is an element in the constitutional fabric” (Truman, 8 and 10). Contemporary examinations of the political process in most democratic nations, including the U.S. and Japan, embrace pluralism as the basic model or yardstick by which to measure group activity. Not every scholar of U.S. politics bought and remained faithful to Truman’s interest

group centered vision of politics2, but most saw it as a basically true, if not always attractive, depiction of the workings of U.S. government. There were, however, critics. First were questions about mobilization. Scholars who tried to understand the system ultimately concluded that, due to unequal resources, leadership talent, and a host of other factors, not all grievances were equally able to organize and confront government (Schattschneider). A more fundamental question was whether it was generally rational for citizens to band together to confront government when they could be “free riders” based on the effort of others (Olson). Second were questions of strategy. Pluralism argues that groups of interest citizens will band together and confront government in an attempt to improve their problems. The theory suggests that like-minded groups will band together, form coalitions, and confront government. Recently scholars have begun to look at the idea “interests” as strategies instead of givens. Interests, it is argued, are complex, changing, and constructed (Stone, Salisbury). It is naive to assume that simple interest exists just waiting to be discovered and formalized. Browne raises

another important concern with his study of agricultural groups. He finds that, contrary to the pluralist notion that groups will “contend against one another for the influence and power to gain their values” (Salisbury, 2), groups generally carve out very narrow niches for themselves. Groups “choose and develop issues to meet the narrow goals of select clientele, defining their issues with the expectation that proposals will engender little active support or opposition from other lobbyists” (Browne, 498). In short, they fight only the battles they expect to win. Third were fundamental questions about the role that government plays in a system that is widely seen as interest group dominated. Lowi complains that pluralism leaves no role for
2

Note the dissent of elitist theorists to the idea of pluralism

government beyond that of referee and, as a consequence, no guarantee or even likelihood that the general will or the common good could prevail over specialized demands. In short, the “pluralist notion that the pulling and hauling among competing interests is sufficient due process”, left government impotent (Lowi, xvi). Pluralism, or a group theory of politics, remains a predominant model for understanding politics in the U.S. despite the obvious weakness of the model and a decreasing scholarly interest in groups as a foundation for policy making. In fact today interest groups are often treated as “the red-headed stepchildren of political science—always maligned, often ignored, seldom understood”( Nownes, 844). Nonetheless, no model provides a framework for analysis comparable to that offered by pluralism. A special concern for this research is to consider how useful the model of pluralism, which is explicitly based in U.S. experience, is to a comparative study of Japanese politics. It is not simple to capture the role that interest groups might have been expected to play in the case of leprosy patients. The first concern is that the governmental process in Japan was in a state of flux during the period under investigation. The decision to segregate leprosy victims was made in 1931 during the Meiji restoration. Japanese government during that period, though copied from a variety of Western democracies, provided only “a limited form of democracy” (McCormick, 133). From 1932 until 1945 Japan was under military control and from 1945-1952 was under occupation by the Allied Powers who oversaw the adoption of a new, Western-style Constitution in 1947 and the establishment of new processes of government. The literature relating to interest groups in Japan generally concedes that “to stretch the idea of pluralism to encompass the Japanese political reality is to deprive it of its original meaning” (Wolferen, 80). The failure of Japan to fit the pluralism model does not mean there

was no mobilization since people in Japan have, since the middle of the 19th century, organized themselves either to pursue their economic interests (e.g., association and concerns of big businesses) or to facilitate their protest movements (e.g. environmental protest, labor organizations, consumer groups, and even prostitutes). In fact, one scholar refers to Japan as “brimming with protest movements and disruptive activities” (Kerbo and McKinstry, 155). Most scholars recognize the importance of groups to Japanese culture. The concern is whether these groups make demands that are translated into public policy. Some scholars totally reject the interpretation of powerful and important interest group leverage in the system and describe instead some variety of state-centric policy process (Nagai, Stockwin, Kawanaka, Johnson, and Pempel). According to these models, policy change takes place less as a response to outsiders’ demands than as a pro-active strategy to create and secure present and future clientele. Elites are more likely to shape mass opinion on policy than to have their opinions shaped by society. The groups exist but they are “either rapidly rendered harmless and forgotten or, if its size or capacity to make noise precludes ignoring it, assimilated quite naturally as a functioning part of the system” (Wolferen, 52). Powerful interest groups dominating the system furthermore are neither seen as an expression of the reality of Japanese politics nor as an attractive possibility. The response to aggressive expression of self-interest following the War was negative. “Japanese political commentators and editorial opinion interpreted such things as undermining the democratic political process; the pressure groups were accused of lack of concern for the general welfare and of selfishly pushing measures from which only they would benefit” (Wolferen, p. 54—citing Asahi Shimbun, editorial16 March 1957). The real power, according to these models, does and should lie elsewhere than in groups. Other students of Japanese politics take a more moderate view and depict a more society-

centric3 process which is fundamentally pluralistic (Inoguchi, Muramatsu, and Sato). These scholars view social movements or uprising conflicts among social groups as important factors in setting the government agenda and inducing its action. In general, the society-centric approaches describe a process that acknowledges a greater leverage for various social interests than is acknowledged in the state-centric interpretations. Despite the larger role attributed to interest groups in these society-centric models, none attributes to interest groups the type of dominant role described in the Truman model. The literature, therefore, anticipates that groups and group demands in the two countries will be more different than alike. In the U.S. the expectation is that, despite its limitations, pluralism rules, that “government cannot be adequately understood apart from groups” (Truman, 502). In Japan, the expectation is that the model of pluralism will be less helpful. If the theories are correct, the experiences of ZKK and the PF should vary with the PF tallying more easy successes. The accounts that follow provide substantial data to measure the realities of the two groups against the competing expectations. ZenKanKyo (ZKK)

3

The notions of state-centric and society-centric models are from Sato, 1997

Political activism at Japanese leprosaria began even before the establishment of ZKK4. In fact, prior to the existence of any formal organization, Japanese patients had proven themselves willing to make demands. In 1937, some 700 patients participated in a hunger strike at one of the sanatoria, Nagashima. They demanded self rule and forced the director, Dr. Kensuke Mitsuda, to resign (IJL, 1937, p. 107). Another demonstration at Kumanmoto followed in the wake of the action at Nagashima (IJL, 1937 5:2, p. 222). In 1947 there are reports of patients in leprosaria filing petitions to “improve their lives by abolishing work requirements for patients and securing minimum standards of living (Sato citing FNLP, 1977, p. 37-40). Newspapers discuss patient riots and promises from the Ministry of Health for improvements (Asahi Shimbun, September 1947). As the literature of group mobilization suggests is frequently the case, ZKK was conceived in crisis. Fujio Ohtani, a historian, participant, and activist of Japanese leprosy policy, names several factors including the “dreadful conditions in the maximum security cell at the state-run Kuryu Rakkusenen Sanatorium in Kusatsu and the horrible death in 1941 of Michita Yamai . . .” and the Fujimoto incident where a patient was “tried, sentenced, executed for murder of the neighbor who turned him in” (Ohtani, p. 108-9). The patients apparently doubted his guilt or perhaps excused the crime. The most significant force for organization was, however, most likely the patients’ desire for promin, the drug that was receiving wide publicity as an effective treatment for the disease (Ohtani, 108; Kitano, 47; and Sato and Narita, 8). The patients probably knew of this drug through the Star, the U.S. patient newspaper, and perhaps also from tales carried person to person The National Hansen’s Disease Patients’ Association (ZenKanKyo) became the National Hansen’s Disease Sanatoria Residents’ Association (Zen Ryo Kyo) in 1996 following the repeal
4

from Okinawa where the U.S. occupation forces were providing drugs for leprosy victims there. In 1948, the patients in five sanatoria combined into The Sanatorium Patients’ League (Ohtani, 109), in October of 1950, a draft of a charter was drawn up, and in 1951 the National Leprosy Sanatoria Patients’ Association encompassing all the public leprosaria, was approved with a secretariat “within the National Tama Zenshoen Sanatorium” (Ohtani, 109). It was not until May 1952 that the patients who headed the branches at each leprosaria were able to meet in person. At that meeting they proposed a change to the 1931 law and insisted that the term Hansen’s Disease replace all references to leprosy, that stipends be paid to patients and their families, that compulsion be abolished, and that discharges be provided for cured patients. (Kitano, p. 48; newspaper file---EEE; Ohtani, p. 111-112). The text of the report making these demands included the notification that “This pamphlet is being offered as a means by which to promote revision of the (Old) Leprosy Prevention Law because we believe that all too many tragedies which beset leprosy patients have been because of this law. Please read all that we offer” (Ohtani, p. 97). Having laid their proposal on the table, the ZKK waited for the Diet to respond. Word came back that the bill being drafted would not reflect their preferences. They resisted. There were sit-ins and hunger strikes during July in Oshima, Seisho-en, and Kagawa Prefectures (Kitano, p. ; newspaper files 7/1/53, 7/4/53, and 7/9/53) but they were to no avail. On August 6, 1953, the New Leprosy Prevention Law (even the term leprosy was retained) was passed by the Diet. “The only concession was a nine-item addendum which was passed by the House of Councillors (the upper house)” which promised that the policy would surely be reviewed again within a few years (Ohtani, 114). ZKK, obviously devastated by the Diet’s decision, rallied once of the Leprosy Prevention Law (Ohtani, p. xv)

again staging a sit-down strike at the House of Councillors and at the Ministry of Health and Welfare (Ohtani, 122). Authorities met with them but the change was already made. The disheartened group made demands periodically over the next decade but, for the most part, “ . . .after this Zenkankyo changed its advocacy and, until the 1970s, re-focused itself on the improvement of leprosaria residents living conditions (Kitano, p. 56). The administrators of the leprosaria who had originally suppressed the movements of the group and objected to its demands, assimilated the group at this point. Their relationship between ZKK and the Ministry of Health and Welfare (MHW) appeared cozy. They worked together to develop consensus and avoided conflict whenever possible. They had regular meetings at the leprosaria or the MHW. During the 1970s ZKK protested against inpatients’ labor, signed petitions to improve life at the leprosaria (my newspaper file), and appealed to the government not to decrease staff (newspaper file 9/18/72 and EEE, 10). What they wanted now was only a partial revision of the law. They feared that if the law was repealed, the legal basis for the government’s financial responsibility for the operation, administration and management of these sanatoria would be gone. They feared that this would mean even worse living conditions with the sanatoria. Also of great concern was what would happen to the patients who would be discharged. (Ohtani, p. 153) By this time, the importance of repealing the law had diminished as discharges had become more frequent and escapes went unpunished. In 1984, ZKK “created a committee to examine revision of the law” (Sato and Narita, p. 9) but it was not until 1991 that they presented their demands. Even then, “there was not that toughness with which to knock down the formidable walls of prejudice and discrimination” (Ohtani, p. 158). By 1995, the toughness was there and the ZKK signaled its support for the end to segregation by participating in the (New) Leprosy Prevention Law Review Committee. In January of 1996, the Minister of Health and

Welfare “received Mr. Takase, President of the Zen Kyo and other representatives of the ZenKanKyo branches in the Minister’s room . . .offered his apologies to the representatives of ZenKanKyo” (Ohtani, 220). Two months later the law was repealed (cite law). After waiting for decades for the law to catch up with medical science, ZKK was not willing to settle for simple revision of the law. The group confronted government once again in 1998, this time in the courts, suing for recompense for the denial of their rights during what the patients referred to as a “century of victimization” (Newspaper file, BBB). In 2001, the court awarded compensation to victims that “amounts to between $65,000 and $114,000 per person depending on the degree of suffering . . .” (Newspaper file SS). The amount was “ a fraction of the $940,000 they sought” but was accompanied by official apologies from both the Diet and the bureaucracy and the appointment of a commission to review the process that allowed such an illinformed policy to be adopted and to persist for such a long period of time.5 The story, in brief, is that three decades after the adoption of mandatory segregation, Japanese leprosy patients organized to made demands on government. Their first pleas for abolition were met forcefully and negatively with a reinstatement of the law including its most onerous feature, mandatory segregation. Unable to persuade the government to respond to their demands, the patients redefined their interests and focused for several decades on issues of quality of life within the leprosaria. In the 1990s, nearly fifty years after their original claim for abolition, they again put forward demands. This time, supported by powerful figures like Fujio Ohtani, they prevailed and won both an end to segregation and recompense for their suffering. The Patients’ Federation (PF)

5

Note that Hajime Sato is member of this commission.

The PF at Carville, Louisiana was born in the 1920s, not of crisis, but of boredom. It was first known as the “What Cheer Club”and had as its mission spicing up the lives of those who were segregated far from their families on an isolated former plantation in rural Louisiana.6 In

1932, the club was renamed the Patients’ Federation but retained its social mission. It sponsored theater performances, labor day picnics, and a well regarded New Year’s Eve party. The first record of political action is in 1937 when the PF voted 214-17 in favor of “the cottage plan over the two building plan” thus taking a stand against the institutionalized atmosphere created by all dormitory living (Stein, 203). Two years later the PF made its first organized effort to reach policy makers outside the institution when it passed a resolution to move the leprosarium to a less threatening climate (Stein, 175). This action was inspired by the malaria outbreak of 193536 which had sickened and/or killed a large number of patients. There is no record of any official response to their pleas. In 1944, there is an indication of awakening when the patients elected thirty-one members to the PF board, one from each of the patient cottages (Miracle, 215-216). Previously the PF had been a five man committee elected yearly by the patient body. By 1946, there were further efforts to strengthen and reshape the organization. The PF, the American Legion Post on the grounds of Carville, and the staff of the patient newspaper, the Star, all three selected representatives to a new body called the United Patients’ Committee for Social Improvement and Rehabilitation (UPC for SI&R). This newly merged organization “eventually drafted a comprehensive program for desired changes, reasons, and recommendations” (Miracle, 265-66). The plan includes some points narrowly crafted to improve life in the leprosarium including more liberal vacations, occupational therapy, provisions for financial aid to the families of bread
6

A note here about where to read the history

winners, a chance to move to a facility in a more amenable climate, the engagement of a plastic surgeon, quarters for married couples, and quarters and meal service for visitors (Star, January 1947, 13). The list significantly includes demands that are much more broadly framed to improve conditions for all victims of leprosy, be they incarcerated at Carville or free. Those demands include the abolishment of compulsory segregation, establishment of outpatient clinics, revocation of the rules that banned those who suffered from leprosy from common carriers, expanded research facilities to improve treatment of the disease, a ban on the official use of the term “leprosy” in favor of the term “Hansen’s Disease”, the abolition from hospital regulations of terms like “parole” that had criminal connotations, and the adoption of a public education program. The plan was mailed to a newly appointed federal advisory committee on leprosy. The government responded by sending the members of the National Advisory Committee to Carville. Dr. R.C. Williams, a member of the committee and an Assistant Surgeon General, met with the UPC for SI &R and said “I look on this as an informal conference to talk over things in which we all are interested” (Star, Dec. 1946, p.9). Within a few months the advisory committee responded with recommendations covering several of the patients’ claims including establishment of outpatient centers in endemic states, financial aid to the families of breadwinners, no comment on public transportation but there would be provision of station wagons for those who wanted vacation or leave, quarters for married couples, provision of more recreational and occupational therapy opportunities, vacation policies that allowed one month vacations twice a year. The advisory committee made no plans to meet again but was left on call. Other changes were made including new meal service for visitors, the provision of specialists in plastic surgeon and ear, nose, and throat, and the change in discharge papers so that they “no longer have a photograph or any mention of leprosy” (Stein, Jan. 1947, 12). In regard to the

broader goals the commission did not mention getting rid of compulsory segregation although it did recommend “a program based on a public health approach in contrast with the present institutional plan” (Stein, Jan. 1947, 10). No recommendations were made regarding the use of

the term “leprosy” nor the adoption of a public education program. The response from the Advisory Committee to requests for small, incremental changes was significant. The response to requests for broad, comprehensive changes was reserved. The PF wanted more. The response to the recommendation for the National Advisory Committee was “Our United Patients Committee, too, will continue its work. Like John Paul Jones, we have just begun to fight. (Stein, Jan. 1947, 13). And fight they did. In 1948 the UPC and its supporter, Colonel G. H. Rarey (the VP of the American Federation of the Handicapped) were responsible for the introduction of the National Leprosy Bill into Congress (H.R. 6653). Similar bills were introduced in every session until 1954. Hearings were held in the Senate in 1949 and included testimony from a discharged patient and “A deposition from Carville signed by heads of patient organizations was filed at the hearing” (Star, May1949, p. 8) but none of the bills ever reached the floor of either house.7 The Star recounts considerable activity about the proposed law in 1948 and 1949 including a $300 contribution in 1948. There is little mention of PF support of the bill after that. The patients seemed to have lost interest or given up hope. It is likely that, as in Japan, the issue of mandatory segregation diminished in importance as out patient clinics opened, more and more patients earned discharges, and escapes were of little concern to the administrators. Maybe another part of the problem was that the staff of the Star and the membership of the PF were being rapidly depleted by discharges. Having seemingly abandoned the notion of broad legislative reform and termination of

the policy of segregation, the PF was nearly dormant until 1955 when the life to which the patients had become accustomed in Carville was threatened. A new administrator, Dr. Eddie Gordon, arrived and announced new discharge policies that asked the able-bodied to leave, encouraged the borderline cases to leave, and suggested that it might not be a bad idea for the disabled to leave as well. The process “created a spirit of unrest and uncertainty among the patients” and that spirit was magnified when all the able-bodied patients were terminated from their government jobs in order to encourage them to leave (Star, Jan. 1955, p. 7). The threats pulled the federation back together and new elections were held for the five member board. Thirteen patients contested and 251 of the 315 patients cast votes. By 1956 the newly invigorated PF had a full plate and an especially large problem. The government intended to tear down the private cottages at the back of the grounds. The cottages, built on government land with no clear title to ownership, housed the most articulate and powerful of the patients including Stanley Stein and much of his Star staff as well as many leaders of the PF. Dr. Gordon had gone too far. The patients boycotted all social events and hired an attorney who, in July 1956, presented a petition and a letter from the PF to the Surgeon General requesting an immediate replacement for Dr. Gordon. On September 13, Senator Otto Passman, who had befriended and supported the patients at Carville, announced that Dr. Gordon was to be transferred. (Star, Sept/Oct. 1956, 10) The patients’ grievances against Dr. Gordon were many but one summed them up as follows: “The director ran the center almost like a prison and was against patients association socially with the staff, among other things. The director was soon sent on his way to Iceland or some isolated place. We never heard from him again” (Elwood, 2). A new administrator, Dr. Edgar B. Johnwick, arrived in November “and within a few
7

Citations for the other three bills beyond H.R. 6653

days the tension which hung over this hospital like a heavy fog, had lifted” (Star 16(2), Nov/Dec. 1957, p. 7). The cottages eventually were destroyed but the “owners” felt adequately compensated for their loss and the Congress allocated money for thirty new brick cottages. More important, perhaps, was the new director’s promise at the first meeting with patients that “No one should be discharged from this hospital against his will. No one should be kept in this hospital against his will” ( Star, Nov/Dec. 1957, p.7). Peace returned to Carville and the PF lapsed once again as its members aged and decreased in number. Stanley Stein, who had been such a tremendous voice for the patients during his thirty-six years at Carville, died in 1967. The federation did rally in 1982 and send its representatives to testify at a Congressional hearing held at Carville. The government had decided to contract out as many services as possible in a cost-saving move but, as a result of the hearing, chose to exempt Carville because so many patients would lose their jobs (Star, Vol. 42(1), p. 2 and Frantz, 1997). In 1985 the long standing policy of mandatory segregation was amended out of the law with virtually no public attention (PL99-117). No major newspaper or magazine covered the story during this period where AIDS held center stage. There is no record that the PF played any role or even made a statement relating to the change that they had fought so hard for in the 1950s. Around 1990, under the leadership of a new administrator, the government attempted unsuccessfully to integrate a geriatric prison population into the then mostly vacant facility but the plan was abandoned only four years later and yet another administrator was forced out (Frantz, 2002, 14). Jack Pendleton, who served as President of the PF during the 1990s, claimed that the federation “ran the Bureau of Prisons out of here.” (Frink, 1996). To nearly everyone’s astonishment, the Center became a centenarian. A100th birthday

celebration was held in November of 1994. The celebration featured a keynote speech by James Carville, a high profile political supporter of then President Bill Clinton and a native of the community which housed the Center and carried his family’s name (Frink, 1994). PL 105-78 was signed into law in 1997. The legislation returned the physical facility to the State of Louisiana, offered a $33,000 annual stipend to any patient who left, and reassured the remainder that they could stay at Carville as long as they were able to live independently. Once they crossed that line, they would be required to be hospitalized in Baton Rouge. On August 19, 1999, the U.S. government turned the nation’s leprosarium over to the State of Louisiana for use as a Job Corps training site. “By then, some 50 patients had taken the $33,000 stipend and departed, leaving only 69. By June 2000, 37 patients remain at the site .. . . and . . . Roughly 24 other patients reside in a special wing at a hospital in Baton Rouge” (Frantz, 2002). The Analysis The analysis aims to glean from the two stories above an understanding of the role of the two patients’ groups in shaping leprosy policy including improving life in the leprosaria and ending mandatory segregation. The expectation is that the U.S. group, based in an avowedly pluralistic society, will be demonstrably more successful in its efforts than will the comparable Japanese group which was enmeshed in what is generally seen as a more state-centric society. The U.S. account indicates that this pluralistic society did in fact generate a group of victims of government policy, the PF, which carefully shaped its demands to include a variety of self interested claims and also what might be seen as transcendent claims. The latter, the claim for an end to segregation, societal education, and outpatient clinics, met not only the interests of the patients but the interests of the broader set of individuals who suffered the disease but could

not or would not organize. These demands were presented to Congress year after year only to be put to the side. Failing to accomplish anymore than a limited hearing, the PF reshaped its interests moving away from the transcendent and focusing solely on self-serving interests. These remaining interests, confronted in the bureaucracy, were accomplished albeit slowly. The experience of ZKK was, contrary to expectations, not so different from the U.S. experience. A group of residents of the nation’s leprosaria formed and made demands on government. The group initially shaped and framed its interests to include not only the needs they, as residents of the sanatoria, had but also the needs of the broader community of leprosy sufferers. They placed their demands before government and, instead of being ignored like the PF in the U.S., received a forceful rejection in the form of a restatement of the mandatory segregation policy. Like the PF, ZKK then retreated into self interest dropping its more transcendent demands and accepting the smaller, more attainable, generally administrative changes that made life in the sanatoria more tolerable and predictable. Unlike the PF which became inactive, ZKK remained formally involved in policy making throughout this period, meeting regularly with bureaucratic officials. Both governments ultimately abandoned mandatory segregation—the U.S. made a formal change in its statutes in 1985 and Japan repealed its leprosy law in 1996. The PF had no apparent involvement in the U.S. move. In the 1990s the PF, reactivated and energized by the a group known as IDEA,8 marched one last time to protect themselves and the historic record of their institution. ZKK, in contrast, played a more visible role in the final demands that the Diet revoke the onerous policy of enforced segregation although the real impetus for the change clearly came from outside the patients’ association. Dr. Ohtani, who led the move to repeal the

leprosy law chose, as a matter of principle, to not move forward with his efforts until and unless the patients’ association agreed to move with him (Othani, 176). Once the law was repealed, ZKK leaders successfully demanded of the courts that those incarcerated under the leprosy law be recompensed. Such an appeal for legal redress of denial of human rights was never made in the U.S. despite the fact that “Japanese people in general find it difficult to protect themselves from powerful interest or pressure for change through the courts (Kerbo and McKinstry, 163). Several themes merit attention if group power in each system is to be determined. First is the question of mobilization. How accurate in these cases is the presumption that those with shared interests will come together to make demands on the system? Second is a question related to tactics or strategies. How did ZKK and the PF define and redefine their common interests and how did they approach government? A third area involves the reaction of government to the demands of the group. To what extent did the two governments respond to group demands? Each question will be addressed in turn. Mobilization of Interests

8

International Association for Integration, Dignity, and Economic Advancement

The question of mobilization of interests is primary. Pluralism can only work to produce quality policy outcomes if all interests are willing and able to mobilize and to confront government with their grievances. Neither Japan nor the U.S. provided an environment where leprosy victims were willing to organize. Certainly those who were not already institutionalized could not organize for fear that they would be discovered and taken under the force of the law. In the U.S. it was always assumed “that for every case isolated here, there are at least 5 cases outside” (Stein,1947). In Japan, despite more dramatic efforts to identify victims during the No Leprosy Movement of the 1920s, Ohtani estimates that by 1950 there were still nearly 3000 uninstitutionalized leprosy victims compared to more than 8,000 institutionalized (Ohtani, 18). The failure of the un-institutionalized to organize prior to the introduction of effective treatments is not surprising as the only point of organizing would have been to demand incarceration9. The development of effective treatments, particularly the coming of Promin in the mid 1940s in the U.S. and in postwar Japan changed everything. Now those who were unidentified were put in the position of having to submit themselves to a stigmatizing incarceration in order to receive treatment. At this point, the denial of their voice is crucial. They had specific demands for government---------stop locking us up, stop stigmatizing the disease with punitive, criminal type laws, and start providing appropriate out patient treatment near our homes.

It is true that the law in the U.S. only called for enforced segregation in those states where public health authorities called for such. New York state never had such a requirement and the few patients within its confines could have presumably organized.

9

The victims who were already segregated had fewer problems mobilizing although the process was far from automatic. In the U.S., as the story indicates, a group had grown up to serve a mainly social function but apparently made no political demands for the first sixteen years (1921-1937), despite what is now obviously a tremendous denial of their basic human rights. There were more than sufficient reasons for complaint. Some who were institutionalized probably never had the disease and others were punished without benefit of trial in the “Carville Bastille”. They were subjected to painful and ineffective medical treatments during which they were not permitted the least shred of human dignity and they were strongly encouraged to participate in painful medical experiments. They were not allowed to vote or to share the companionship of the opposite sex. Their infants were removed from them and their money and mail were sanitized. They certainly had shared interests from the outset. There were demands to be made upon the system. Those demands were not made, however, until Promin and the hope of cure came. The motivation to political action in the U.S. was probably multi-faceted. One factor was the appearance in 1941 of the patient newspaper, the Star, and its ever present, politically talented editor, Stanley Stein.10 Stanley Stein, known before his admittance to Carville as Sydney Levyson, was, in addition to being the editor of the newspaper, a member of the PF since its renaming in 1932 and its first entertainment chair. Although he never served as President, Stanley Stein did, according to his own account, spearhead the development of the UPC for SI & R which superceded the PF for several active years in the 1950s (SS, 231) and his editorializing and reporting in the Star concerning patient demands gave a tremendous boost to any cause the PF embraced. A second factor that seemed to have spurred the PF to action was The Star was published between 1931 and 1934 and disintegrated due to a battle with the priest or perhaps a boycott (SS, p. 161). It reappeared in 1941 and continues publication
10

the success of Promin and the drugs that followed. There was a new cause, a new reason for a change in policy. More people were being hurt by the enforced segregation policy than in the past. Up until Promin, the most obvious victims of the policy were those who were either so sick that they turned themselves in, so miserable in society that they could not endure freedom, or so unfortunate that they were reported. After Promin, the number of victims expanded to include everyone infected with the bacteria. Those who were not at Carville were able to receive life altering drug therapies only if they voluntarily handed over their freedom. Japan, like the U.S., never saw the mobilization of leprosy sufferers and did not see early formal mobilization of sanatoria residents. Certainly both groups had shared interests. There were presumably thousands of leprosy sufferers in Japan who were never identified and they, like their counterparts in the U.S., could not organize. Those incarcerated in the sanatoria of Japan had even more reason to come together to make demands on government than did U.S. patients. The situation in Japanese leprosaria was harsher than in the U.S. Patients were required to work, food was often in short supply, there was inadequate clothing for cold weather, patients were subjected to vasectomies if they desired to marry and to abortions if they became pregnant. The mobilization of Japanese patients into the ZKK was more complicated than the situation in the U.S. largely because of the larger number and geographic dispersion of the patients. At its peak, there were only about four hundred patients at Carville, while over 8000 resided in Japanese sanatoria between 1948 and 1950 when ZenKanKyo was shaped (Ohtani, 18). The process of forming the association was much more formal with branch associations in each of the 13 national santoria and provision for a secretariat within the National Tama Zenshoen Sanatorium in Tokyo. Decision-making was complicated by the inability to the today.

representatives to leave their santoria to meet and it was not until May 1952, about a year after the establishment of the group, that the members met personally.(Ohtani, 111). The motivation for the mobilization of ZKK was both concrete and abstract. The promise of democratization that characterized the post war period was undoubtedly important. Ohtani comments that “With the end of the War, they became aware of their situation. It was as if they had been awakened. It marked the beginning of their struggle in search of human dignity and freedom” (103). In more concrete terms, there were scandals and stories of mistreatment as outlined in the story above and, perhaps most important, there was the promise of an effective treatment. The patients knew that Promin was available in the U.S. and other countries and they demanded that their government provide them with that treatment (Kitano, p. 47). Mobilization of interests, as visualized in the pluralist model, occurred with confined patients in both Japan and the United States at about the same time. Mobilization of leprosy victims, including those who had not yet been incarcerated, was inhibited in both countries for decades after treatment was available. Definition of Interests The second line of comparison concerns activities within the mobilized groups. In particular, the concern is with how groups develop strategies—how they defines interests and chooses tactics to advance those interests. Most of the literature on groups has “given short shrift to the internal politics of organizations” (Rothenberg, 127) and basically assumed interests as a given and a constant. In fact, as Salisbury claims, “for the most part, interests are constructed rather than given, ... they are continually emergent from the political process and ................the task of interest group representatives lies in discovering what their groups’ interests are so as to protect and perhaps advance them” (p. 375). The glue or common problem that holds a group of

individuals together is defined politically and “Problems are defined in politics to accomplish political goals” (Stone, 231). Rothenberg’s study of Common Cause and its fluctuating definition of its goals is instructive as is Browne’s study of the agricultural sector (Rothenberg and Browne). Both studies document groups as they construct and reconstruct their goals in order to satisfy their membership (Rothenberg) or reshape their goals in recognition of the fact that some goals “appear to be beyond the groups’s capacity to win” (Browne, p. 346). Data from ZKK demonstrate the continual process of goal construction. Prior to 1952, every documented action of the group was focused on the needs of the institutionalized victims. Specifically the actions were designed to improve the abysmal conditions in the leprosaria and to bring Promin to the incarcerated. By 1952, patients in Japanese leprosaria had access to effective drug therapies and these treatments are important in understanding the goals as articulated by the group in 1952 and 1953. The first meeting of the ZKK branch heads in May 1952 produced a list of demands that, not surprisingly, included calls for improvements for the patients in the sanatoria ( a public allowance, support for the families of bread-winners, changes in the types of punitive action allowed in the institutions, clear discharge rules, and liberalized leave policies). Somewhat surprisingly, the list drafted by the new organization also included more transcendent goals including the provision of outpatient treatment “for patients who do not pose a threat in terms of transmitting the disease” and an appeal to the government to “change the terminology so that “Hansen’s disease” replaces “leprosy”. (Ohtani, 111-112). These provisions may not seem particularly transcendent but later events demonstrate that most of the patients had no intention of departing the institutions themselves. They were looking to the needs of those who were not organized—who had no voice. The appeal to move away from the stigma-ridden “leprosy” to the

more neutral “Hansen’s Disease” remained in the official request to the legislature but “As a result of discussion” ( Ohtani, 112), the references to out-patient treatment were omitted. For at least a brief moment, the goals of ZKK were transcendent as well as self-serving. Despite intermittent skirmishes with the administration in the years following 1953, ZKK ultimately abandoned its broad, transcendent goals and turned inward. The dates are not specific or clear but the change was certain. Kitano comments that the last real effort at abolition of mandatory segregation came in 1963 and that “After this Zenkankyo changes its advocacy and, until the 1970s, re-focused itself on the improvement of leprosaria residents’ living conditions” (56). Ohtani describes a later time frame and sees sporadic efforts to have the law changed as late as 1972 when both ZenKanKyo demanded only a partial revision of the law. “They feared that if the law was repealed, the legal basis for the government’s financial responsibility for the operation, administration and management of these sanatoria would be gone. They feared that this would mean even worse living conditions with the sanatoria. Also of great concern was what would happen to the patients who would be discharged” (Ohtani, 153). From 1972 to 1991 there is no indication of any public action on the part of ZKK, or anyone else for that matter, to end enforced segregation. There were reports the ZKK “created a committee to examine revision of the law” (Sato and Narita, p. 9) in 1984. The major action documented during this period was in 1976 when clear discharge rules were proposed by the Federation of Leprosarium Directors. ZKK “subsequently objected to the proposal based on the concern that the adoption of clear discharge codes could result in forced discharge (see citation in Sato, 2002.) The “interests” of ZKK were reconstructed again in 1992 when Ohtani began an effort to repeal the law. Once again the issue was whether the residents were willing to make demands

that served a wider constituency (all those current and future) with the disease even if those demands put this own immediate futures in jeopardy. Serious discussion of repeal did not begin until 1994 since Ohtani had promised that “the movement would not become activated if those living in the sanatoria objected” (Ohtani, 176). Agreement came in January 1995 when Ohtani “successfully persuaded patients to go ahead with his proposals” (Sato, Abolition, 9). Similar fluctuations in goal definition are obvious in the data from the U.S. PF. Until 1945, the PF was generally interested only in improving living conditions at the institution and/or the removal of the institution to a more amenable location. That all changed in 1947 when the United Patients’ Committee prepared its list for the National Advisory Committee. That list, as indicated earlier, included not only self-serving improvements like occupational therapy and more liberal vacation policies, but also included an outright call for abolition of compulsory segregation, establishment of out clinics, more research facilities, an official abandonment of the term leprosy in favor of Hansen’s Disease, and a call for a Public Education Program (Stein, 1947,13). The PF put itself on the line by confronting first the National Advisory Committee (1947) and then the Congress (1948-1954) with this broad ranging set of demands. They received partial satisfaction from the National Advisory Committee but Congress failed to respond. Each time the National Leprosy Act was introduced, the PF became less active, less involved, less demanding. After 1954, there is never again a call for true statutory reform—for an end to segregation. The United Patients’ Committee shrinks back into the PF and back into the pattern of demanding only those changes that serve the needs of the institutionalized. The patients, as the earlier account shows, were hardly passive in the 1950s. They exerted great influence, make tremendous demands, and won. They slowly accomplished the goal of turning the facility at Carville into a public health facility rather than a penal institution.

Strategy is related not only to defining interests but also to choosing tactics. In both Japan and the U.S., tactics changed over the years. Perhaps the most important strategic choices for both groups were where and how aggressively to fight the battles. ZKK fought its battles first with the bureaucracy, then moved to confront the Diet, retreated back to the bureaucracy, and chose to make its final appeals to the Diet and the court system. The bureaucratic years, roughly during the 1960s, 1970s, and 1980s, correspond with claims for improvements in leprosaria life and with gradual but certain success. They are also characterized by quiet, non-public demands. While the bureaucracy was a safe place to confront, the Diet was hostile. The public nature of legislative decisions generated conflict and the ZKK was aggressive in its activities including sitins and other demonstrations. The courts, which also provided considerable success for the ZKK, were not approached until the very end of the saga. It is likewise true in the U.S. that the bureaucracy was the safest place to lodge demands for improvements at the facility. The broader, more transcendent claims including the demand for an end to mandatory segregation, however, required legislative action. The U.S. Congress, though it could hardly be called hostile, was immovable. The PF brought forward a well formed, logical, scientifically founded proposal. They elicited the aid and assistance of outside allies and made connections with important congressmen and with other public figures. Their efforts, though well founded, still failed. They too then retreated to the bureaucracy. The relationship of the PF Federation with the bureaucracy was not so safe and quiet as the relationship in Japan, but the patients could and did win most of the battles there. Surprisingly, the PF never appears to have sought a judicial solution to their demands. Government Response Active interest groups alone do not create a pluralistic, or interest group dominated,

society. Group demands must be turned into policies or outputs. Pluralism conceptualizes government as a referee assuring a free fight among contenders and, as a result, “Freedom for each group is thus maximized, goals are moderated, and social consensus is promoted” (Salisbury, 2). The case studies indicate that in both Japan and the U.S. the battle lines were not between contending groups but between, on the one hand, groups representing an end to inhumane treatment of those with leprosy and, on the other hand, government itself. In short, the government was not a referee only but a referee-player. Critics have noted that one problem of a group oriented political process is that “interests that are morally equal might be politically unequal” (Stone, 227) but the presumption is that “The role of government is precisely to protect weak but legitimate interests against stronger but less virtuous ones” (Stone, 227). Both the Japanese and U.S. governments participated as players in the process, but it can be easily argued that both played against the weak but legitimate interests. Some variation of a National Leprosy Act was presented to the Congress of the United States in every Congress from 1948-1954. At the only hearings that were held (Senate 1948), no group came forward to resist the demands the patients and their allies were making on government. In general, the hearings were non-controversial, sympathetic, and ultimately full of empty promises and unfulfilled expectations. The only dissenting voices were from the bureaucracy which insisted that it was moving forward on its own to alleviate problems at the leprosarium and that it already had plenty of power to conduct an education campaign. The general sense was that no change in law was necessary, this could all be fixed “in house”. was not necessary to deal with the common carrier ban on those with leprosy. After all the patients now had access to two station wagons. The demands of the PF were not lost in negotiation and bargaining with groups with countervailing claims. They were lost in a It

confrontation with the government itself which presumably saw no need to expend additional funds on an institution that had served its day. Their plan was to close the place down, not fix it as the events of 1955 and 1956 demonstrate. The specialists in the bureaucracy were the “other side” in the battle waged by the PF. The Japanese government likewise served a role that was much more than that of a referee. The Diet, when challenged to fix or repair the inappropriate mandatory segregation policy, listened not only to the ZKK but listened even more intently to the bureaucrats in the Health Ministry. Three leprosaria directors met with Diet members to discuss the recommendations of ZKK and “The testimony of three directors clearly indicated that those who represented the sanatoria refused to accept the new principles of the new times and were determined to persist in their pre-war opinion” (Ohtani, 107). Just as in the U.S., the demands of the patients’ group were countered, not by opposition groups, but by the bureaucracy. Conclusion The paper has examined leprosy patient organizations in Japan and the U.S. as they organized and confronted their respective governments for fair and just treatment. Both groups were nurtured by oppressive laws that called for mandatory segregation of all who suffered from the disease of leprosy. The expectation, at the outset, was that the two groups would have significantly different experiences. The U.S. group, PF, was operating in an environment most frequently described as pluralistic or group dominated and one that had a deep tradition of respect for human rights. It would have been surprising to read a history of a U.S. leprosy colony and not find an active, aggressive, and probably successful patient advocacy group. That is, it seems, the U.S. way. The expectation for Japan was different. The original or Old Leprosy Prevention Law

dated back to 1931 when Japan had only the beginnings of a democratic system. That law endured throughout the nationalistic build up to war, the war itself, occupation, and the adoption of a new constitution with newly instituted notions of human rights. The governmental

environment even today is noted by many scholars for its lack of responsiveness to group demands. It would have been surprising to find a patients’ organization in Japan that formed quickly, made strong demands, endured, and ultimately triumphed. The stories of the two groups, though not identical, turn out to be rather similar. In both cases, a group representing the patients incarcerated under the respective laws organized fairly early. In the U.S., the group was originally developed to fill social needs but was politicized during mid century by new leadership and by an increasing confidence among the patients that the policy of mandatory segregation was indefensible. In Japan, ZKK was political from the outset when it demanded Promin, the newly available treatment drug. Neither system produced a broader association for all leprosy victims demonstrating that potential interests, whatever country they are in, are not likely to organize if the law prescribes incarceration as the price for identifying oneself. The two patient groups, once organized, constructed similar conceptions of their interests. The most obvious shared interests had to do with living conditions in the sanatoria but both groups, during mid-century, constructed a broader conception of interests that included the needs of all leprosy patients, both within and without the institutions. They envisioned a public policy that provided out-patient care to fill the needs of those who were not institutionalized and they envisioned a public policy that chose to de-stigmatize the disease through the use of “Hansen’s Disease” instead of “Leprosy” and through the inauguration of public education programs. Both groups confronted their respective governments with their demands and discovered

that government responded to narrow demands for improvements in the leprosaria in a more generous manner than it responded to broader demands for transcendent changes that directly affected the public. Both groups also discovered that victory in the more public, legislative arena was illusive while victory in the bureaucracy was, though painfully slow, achievable. This examination of the mobilization, strategies, and results of patients’ organizations from both Japan and the U.S. as each confronted mandatory segregation policies for leprosy victims provides important insights for the comparative study of interest groups. It suggests in terms of mobilization that groups of individuals burdened by government policy perhaps rather naturally form unless there is a penalty for identifying with the group. It suggests, furthermore, that groups are challenged to define themselves and may well find that their influence is enhanced if they stay committed to narrow, self-interests. Finally, the examination raises the possibility that government itself plays a much larger role than is suggested by the pluralist model, that government is not a referee exclusively but may, and in this case did, represent the “other” side of the argument.


								
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