Ending Isolation, Perpetuating Community, Honoring Kupuna
By: Kerri A. Inglis, Ph.D., University of Hawai'i - Hilo
Remembrance- Summer 2019 article
On January 6, 1866, in keeping with An Act to Prevent the Spread of Leprosy , the first 12 leprosy patients were sent to the Kalaupapa peninsula – separated from their families and communities, to live out their lives in isolation. They were followed by wave after wave of patients, such that from 1866-1969, approximately 8,000 people were exiled to this peninsula on Molokai’s north shore, separated from “topside” by the almost two-thousand-foot pali (cliffs).
By the early 1900s, the disease was known throughout the islands as maʻi hoʻokaʻawale ʻohana (the disease that separates family). While still remembered as such, 50 years after the separation laws ended in Hawaiʻi, the disease – and peninsula known for its isolation – has become a place of remembrance, respect and honor, bringing families together and perpetuating a sense of community that has always been a part of this settlement.
In its first decades, even though circumstances were difficult, the leprosy settlement developed into a community of patients, their helpers, and native residents. Kamaʻāina (native residents) of the peninsula provided food and shelter to the exiles, until finally they themselves were forced to leave. Mea kōkua (helpers) often accompanied their loved ones to the peninsula to assist in their care. Despite the hardships of separation from ‘ohana (family) and dealing with the ramifications of a dreaded disease, patients found a way to persevere – demonstrating their resilience by remaining connected to the lāhui (nation), by maintaining their values, and surviving as a community.
In 1949, prompted by patient advocacy, the Territory of Hawaiʻi officially adopted the term, “Hansen’s disease.” By that time, the disease was medically treated as any other bacterial infection, but forced separation due to decades of misunderstandings and stigma persisted. The end of forced separation was still awaited, and again, it took patient advocacy to effect change and bring about an end to the isolation policy.
In 1968, 183 patients lived in Kalaupapa; another 124 people with inactive cases had left the settlement to return to their home communities. In an effort to overcome the ignorance that still existed, patients spoke out. Appearing on the cover of Beacon: Magazine of Hawaii in February 1968, Kalaupapa patient Richard Marks stated “I am a Leper” and told the very personal story of himself and his ʻohana. Marks expressed his frustrations with the politics of living in Kalaupapa, the restrictions on patients – including the fumigation process – and questioned the future of Kalaupapa. His deepest concern was the perpetual stigmatization of leprosy. It was time to banish the attitude, not the patients. For his candid comments, the Beacon declared Richard Marks their “Man of the Year.” Together with a committee of patients, physicians, and other leaders, efforts to inform the public and end the unneccessary law were underway, and on June 30, 1969, the separation policy officially ended. After medical advancements brought an end to the need for a life of quarantine, it was patients who brought about an end to exile, in their quest for dignity.
Since that time, additional former patients have shared their experiences of life in Kalaupapa. They have spoken in public forums, visited schools, been featured in documentaries, and published their stories – all in an effort to advocate for change and educate the public. But as Olivia Breitha once shared, even though physical barriers had been removed and the isolation policy had come to an end, emotional barriers and stigma sometimes remain.
In Kalaupapa today, the past, present, and future come together with hope, in the hearts and minds of those former patients who still live in the settlement, and those who serve this small but formidable community – one that begs us to honor and remember the kūpuna who have gone before us, all that they sacrificed, and to tell their stories. This year, the Kalaupapa community came together to commemorate the 50th anniversary of the end of the isolation law in a week filled with cultural events for the patients and community as a whole. Over 5,700 individual tī leaf lei were donated from all islands, plus many other flower lei from Molokai and the Kalaupapa community itself, and were placed at every known gravesite on the peninsula, all in an act of remembrance.