If you find social distancing and lockdown to be a pain, imagine being confined in a facility far from home, torn from your family, and locked away from society. This is a reality that patients with Hansen's disease inevitably faced during the 1700s until the mid 1900s.Hansen's disease, more commonly known as leprosy, is a bacterial infection that damages skin and causes deformities. Many people associate it with the historical and religious stigma it has garnered over time. It is not a medical condition people are often exposed to in their day-to-day life, as 95% of people have natural immunity to the ailment. However, there are about 5000 people living with Hansen's disease today in the US and between 20 million and 50 million people with the illness worldwide.
Contrary to the stigma around Hansen's disease, such as the idea that patients are "unclean" or "sexually immoral," the diseases is generally transmitted through saliva. A more outrageous way that it can be spread is through contact with an armadillo (who knew). Originally, is was thought that there was no cure for this ailment, but Hansen's disease can easily be treated with antibiotics. Despite this, stigma's surrounding this illness still prevail, making it difficult for patients to seek the treatment they need.
Initially, the United States felt that the best way to handle Hansen's patients was by separating them in order to isolate the bacteria. Hence, in 1917, plans were set in motion to isolate patients in remote areas, such as the island Moloka'i and Kalaupapa. Life in these communities was 50/50. On one hand, these locations were set in gorgeous areas nature, and many patients were able to develop a sense of community. As many as 1,000 patients got marries within the first few decades that the facilities operated. However, the experience had many downsides. One patient, Olivia Robello Breitha, documented in her autobiography, "They catch you like a crook and you don’t have any rights at all. They didn’t care about ruining a life... I was just a number." Patients were unable to make direct contact with their families, and mother's with Hansen's often had their children taken away from them. They were often denied their freedoms, unable to move about freely, vote, raise families, see loved ones, or work, and they were often stripped of their identity and encouraged to change their names to avoid shaming their families. Many patients died within their first decade at these facilities, and in other cases, they faced maltreatment and harsh punishments.
Fortunately, as science evolved, a cure for Hansen's disease was finally created in the 1940s and most countries began to lift the isolation restriction, though some of the stigma still remained. And though most patients have long since been cured and left the facilities, a handful of them remained. Doctor Sylvia Haven explained that to some, “When they came here, the law guaranteed them a home for life, and that can't be taken away.” As the facility been the only thing that some of them have ever known, it has become eventually become their home.
Sources:
https://www.history.com/news/leprosy-colonies-us-quarantine
https://leprosyhistory.org/geographical_region/country/the-united-states-of-america
https://americanhistory.si.edu/blog/2011/08/the-history-of-leprosy.html
I found your post very interesting, I was not aware of such colonies beforehand. In addition to the colony on Moloka'i, which was the largest one, there were several other colonies such as Carville, Louisiana. Accepting it's first patients in 1894, it would house over 5,000 people over the next century. Patients were urged to give up their identities so their families won't face the social stigma, much like the patients who were confined in Kalaupapa. Carville became a leading centre for Hansen's disease treatment, developing the drug therapy treatment there in the 50s. While not in use anymore, a number of people chose to continue living there even after the mandate was lifted, with 150 people living there as late as 1990s.
ReplyDeletehttps://www.vice.com/en_us/article/ne7kwm/life-inside-louisianas-leprosy-quarantine-was-horrific-and-inspirational