Conclusion
Kalaupapa remains a historically sensitive topic for Hawaiians due to the remembrance of its controversial history regarding the suppressed rights of the patients versus the government’s responsibility to protect the public. This conflict led to better treatment of Hansen’s Disease patients, improved medical protocol, and reference for the American government and its responsibility to prevent the spread of another socially stigmatized disease: AIDS.
"Anyone who is diagnosed with Hansen’s Disease is eligible to receive services, and there is no need for isolation or institutionalization for this condition. This disease also carries a high confidentiality like AIDS and Hepatitis so the patient need not disclose this to anyone without his/her consent. Patients receive treatment just like with any other condition for which you take medications... No one is denied assess to care and lack of financial means is not a barrier to care.
-Hawai'i Hansen's Disease Community Program Manager Lori Ching, in a personal interview (Feb. 21, 2014)
“In August 1987 a California microbiologist named William O’Connor testified before the House Energy and Health Commission and recommended that all AIDS victims be exiled to Kalaupapa…The U.S. surgeon general at the time, Dr. C. Everett Koop [believed] the result of such an exile policy would ‘do little more than frighten away’ the very people who would benefit from treatment, thus deepening the epidemic. Koop had gleaned this lesson from studying historic epidemics, including leprosy in Hawai’i.”
-John Tayman, author of The Colony (2006)
Photo courtesy of Anwei Skinsnes Law, Christopher Ley, and Carl Vandervoort's documentary Olivia and Tim: Very Much Alive (1994).
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“AIDS is the modern-day leprosy." “The advent of AIDS has given witness to repeated comparisons between the social reaction to the two diseases, comparisons that go so far as to label persons with AIDS the ‘lepers of today.’ Such comparisons only serve to perpetuate the stigma associated with each disease and increase the burden placed upon those affected. No one should be called a ‘leper’ and turned into an outcast simply because he has a disease or a debilitating condition that the public is afraid of, or does not understand.” “I don’t want to see this again. Treat them as human beings, not like something untouchable like we were. People want to get rid of the people who have AIDS. But they forget that people who have AIDS are also people, just as we were. They shouldn’t banish people just because they’re scared, not ever. Look what it does to a life.” |
"Clearly the legal, social and medical history of [Hansen's Disease] in Hawai'i is an integral part of the historical fabric of the islands--in fact such an integral part that changing treatment policy depended on major revision by the legislature of the entire health code and sections of the legal codes affecting many areas other than health."
-Hawai'i Department of Land and Natural Resources, "Kalaupapa Report on Senate Resolution No. 354" (1975)
Patients' Bill of Rights and Responsibilities
Adapted by the Hawaii Naval Health Clinic (Mar. 2008)
Adapted by the Hawaii Naval Health Clinic (Mar. 2008)
RIGHTS
MEDICAL CARE. You have the right to quality care and treatment consistent with available resources and generally accepted standards.
RESPECTFUL TREATMENT. You have the right to be respected as an individual, regardless of race, ethnicity, gender, and mental or physical disability. IDENTITY. You have the right to know, at all times, the identity, professional status, and professional credentials of health care personnel. INFORMED CONSENT. You have the right to be advised [of] risks, benefits, significant complications, and medically accepted alternative treatment methods. PARTICIPATION IN CARE. You have the right to participate in decisions about your care including treatment, resuscitative services or life-sustaining treatment, and organ donation. |
RESPONSIBILITIES
PROVIDING INFORMATION. You have the responsibility to provide...accurate and complete information about present health problems or concerns [such as] past illnesses, hospitalizations, medications, family history, and other matters relating to your health.
RESPECT AND CONSIDERATION. You have the responsibility to be considerate of the rights of other patients and health care personnel. IDENTITY. You have the responsibility to provide proper identification to health care personnel. PARTICIPATION IN MEDICAL CARE. You have the responsibility to be involved in healthcare decisions, which means working with providers in developing and carrying out agreed upon treatment plans and clearly communicating your wants and needs. |
Although time cannot be returned to those who suffered at Kalaupapa, there is reassurance in the knowledge that such a controversial event regarding Hansen's Disease will never happen again as patients now have protected rights upon which the the government may not infringe.
Photo courtesy of James Brocker's The Lands of Father Damien (1997).
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"When one looks at a place like Kalaupapa, there's an extraordinary beauty here which masks the kind of suffering that took place...It makes me really think about the two kinds of misery that existed here: misery that came as a result of a bacterial assault...and the kind of misery that came as a result of society's assault on those who were afflicted with the disease." This is a song written by Reverend Dennis Kamakahi and Stephen Inglis about Kalaupapa's importance in Hawai'i's history (2012).
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"A society so quick to deny the rights and even the humanity of the ill can hardly describe itself as just or decent." |
Photo courtesy of Wayne Levin (2010).
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"The history of [Hansen's Disease] in Hawai'i reveals the tragic, long-term effects of a stigma that is unwarranted and has been unfairly applied to members of [the] community...If the history of Kalaupapa teaches us anything, it must be that never again should we take away a person's rights and remove him from society simply because he is affected with a disease, no matter how misunderstood that disease is. The price paid by the individual, his family, and even society, is just too great." Photos courtesy of the Damien Museum (1915).
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"In a general and profound sense, the presence of the disease affected the Hawaiian people's view of themselves as a biological and cultural entity capable of survival. And the other side of these considerations can be found in the reinforcement lent by leprosy among the Hawaiian people to the view of [the American] as the destined controller of overseas territories peopled by non-whites. In other words, leprosy and the attitudes associated with it became and [remains] part of the nation's political and imperial history."
-Hawai'i Department of Land and Natural Resources, "Kalaupapa Report on Senate Resolution No. 354" (1975)
Photos courtesy of Wayne Levin (2008).
"We're sorry. We're sorry for the treatment. We're sorry for the suffering that you've been through...The entire state is with me today as I say this."
-Senator J. Kalani English to former Kalaupapa patients (2008)
Letter courtesy of the Hawai'i Medical Journal (Feb. 1988).
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"To see the patients that still live here, some of them for as long as sixty years, and to know what's happened here--you start to understand how important this disease is to Hawai'i and society in general and how much effort we have to make to overcome the terrible things that happened as recently as fifty years ago in Hawai'i." |