A Lasting Legacy (1969-present)
Leprosy's Decline in Hawai'i
After sulfone treatment became available to the public, the number of Hawaiians diagnosed with leprosy decreased significantly. Today, the disease is prevalent in American cities with high immigration rates and developing countries, and isolation is no longer a federally approved method for its eradication anymore.
"The 1970s and early 1980s were difficult years for the patients and the [1960 established] Department of Health, for it was a time of great transition. Both struggled to deal with the change in laws and attempted to destigmatize the disease. Movies, television shows, and books continued to exploit leprosy for sensational effect...Persistent references to 'lepers' in the media and elsewhere led the state legislature in 1981...to declare 'Hansen's Disease' the official term in Hawai'i."
-Anwei Skinsnes Law, Kalaupapa, A Portrait (1989)
"Number of new Hawaii-born cases of leprosy (no history of residence other than Hawaii) by ethnicity and by age at first registration."
Statistical tables courtesy of the International Journal of Leprosy and other Mycobacterial Diseases. |
Data courtesy of the World Health Organization's "Weekly Epidemiological Record" (Sept. 2, 2011).
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"Rapid bacillary death from early multidrug treatment provides "chemical isolation," thus making physical isolation irrelevant...It would seem that the epidemiologic situation in Hawaii has changed in recent generations...The epidemic is therefore declining, probably due to increasing human resistance to the bacillus." |
"There are currently 286 persons on the State of Hawai'i Hansen’s Disease Registry...Hawai'i is higher than the national average for [Hansen's Disease] cases primarily because we have a high immigrant population, and it has always been an ‘imported’ disease...in other words a person may have lived with someone with untreated Hansen's Disease for years before arriving in Hawai'i and developing symtpoms. Other states that have high numbers of Hansen Disease cases are Louisiana, California, Texas, New York—all are “portal” cities which have high migration." |
“Although Kalaupapa was established in 1866, other total institutions or leprosariums like Kalaupapa were established throughout the world. Compulsory segregation legislation was passed in Norway in 1885; in New South Wales in 1890; in Cape Colony, South Africa in 1892; in Japan in 1900; in Ceylon in 1901; and in Canada in 1906...Kalaupapa, then, may have been a kind of international public health model for the isolation and containment of the disease, and for those who carried it.”
-Hawai'i Medical Journal (Feb. 1988)
Life after Forced Segregation
The government initially wanted the remaining patients to leave Kalaupapa so they would no longer be its responsibility, but most patients refused to leave because they believed they earned the right to remain.
Video about the aftermath of the Kalaupapa settlement. Courtesy of the Gene Colling documentary Kalaupapa, A Story to Tell. (2010)
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"Up until the mid 1940s both patients and outsiders saw Kalaupapa as a prison, a place to which those with Hansen's disease were consigned for the rest of their lives to prevent their disease from spreading to others. Today the patients see Kalaupapa very differently...Now it is a refuge from the outside world, which often seems to them a difficult place." "Some people think that we don't have a life here, and we do. Life is good here. I don't want to live anyplace else in the world but Kalaupapa. It's my home. I would like to live here and die here. And be buried here. And I hope they will never tell us to leave. That will kill a lot of us." |
Patient Testimonies
"Hawai'i is in a unique position to challenge the stigma associated with leprosy, for the islands have not only a moving history to tell but also individuals who are willing to speak out and share their experiences with the disease in an effort to dispel the myths that surround it."
-Anwei Skinsnes Law, Kalaupapa, A Portrait (1989)
Photo courtesy of Wayne Levin (1984).
"I never had any idea of leaving the settlement. To leave the settlement, no. I feel that we are all alike, and there's nothing to be ashamed of. Today people ask me, 'You don't have ideas to leave the settlement?' 'For what?'" |
Photo courtesy of Wayne Levin (1985).
"How would you feel if somebody told you that treatment would no longer benefit you, coming to this end-of-the-world place when you were nineteen or twenty? You thought--Oh my god, I'm going there to die, without my family or anybody." |
Photo courtesy of Wayne Levin (1984).
"I would say that about ninety-nine percent of the people that I've met from different walks of life from all over the globe are really curious about the settlement. They want to know what this is all about, what patients look like, what's going to become of this place, why I am here...I really believe that people need to be educated." |
Photo courtesy of Wayne Levin (1985).
"In 1985 when I first got discharged, I went to Maui to visit my family...I went with my sister-in-law to a flower shop. She introduced me to a lady, and this is what the lady said: 'Do they let that kind of people out? Don't they know it's a big mistake to let that kind of people out?'" |
Photo courtesy of Wayne Levin (1985).
"I'm a 'leper'...They treated me like a leper all my life. They tore us away from our families and homes, segregated us here and treated us like untouchables. They only use that other word because 'leper' now makes them feel uncomfortable." |
The patients advocated for a lasting legacy in the form of the establishment of both a National Historical Park and a memorial in honor of those who died there.
"With the National Park...I would really, really like to see this place stay sacred. Sacred in honor of those that died here because of the disease, those who fought for allowances, fought for the clothing, fought for medication, fought for their freedom."
-Former Kalaupapa patient and resident Henry Nalaielua (1985)
"Kalaupapa graves."
Photos courtesy of James H. Brocker's The Lands of Father Damien (1998).
Photos courtesy of James H. Brocker's The Lands of Father Damien (1998).