Florida Has a Hansen’s Problem, and Mother Jones Has a Language Problem

dasypus novemcinctus, nine-banded armadillo“All the days wherein the plague shall be in him he shall be defiled; he is unclean: he shall dwell alone; without the camp shall his habitation be.”[i]

That’s the passage from Leviticus that sanctioned the segregation of people with Hansen’s disease, better known by the name “leprosy.” When most people think about Hansen’s, they think of medieval Europe or tropical locations like Hawaii’s Kalaupapa. I think of places like Louisiana, Texas, and—right now—Florida.

I just returned from Florida, where I spent a month visiting my family. I saw a lot of fantastic wildlife in the month I spent there: deer, sandstorks, an endangered snake that my mother and I just barely avoided running over, and a giant turtle I saved from almost-certain squishing.

In addition to living animals, Florida boasts truly impressive roadkill. Case in point: the dead armadillo I drove past last week. Within a day of that unfortunate discovery, I stumbled upon a Mother Jones article with a great title: We’re Destroying Armadillos’ Habitats, so They’re Giving Us Leprosy. Because we really needed another reason to love Florida.

Shockingly, the stock photograph site I use didn't get the memo either.

Shockingly, the stock photograph site I use didn’t get the memo either.

I’ll admit, the article has a great headline; it made me think of the Redwall books I read as a kid. The topic, however, isn’t nearly as fun as the title: so far this year, nine Floridians have contracted Hansen’s disease, nearly double the number infected in the average year. The article then goes on to provide all the information readers “need to know” about leprosy, which you can boil down to three basic points: (1) Yeah, armadillos carry the disease, (2) Yep, leprosy’s still a thing, and (3) No, you don’t have it. They also made a half-hearted attempt at describing the state of patients today, but did so by reducing the stigma around the disease to the continued existence of the Kalaupapa colony in Hawaii. I guess the colonies outside the modern-day United States weren’t that important.

Needless to say, it seems Mother Jones and I have different definitions of “need-to-know” information on this particular topic. Unsurprising, because the article also refers to the disease in question as “leprosy.” Here’s something you actually need to know: that’s not cool. Don’t do that.

This is a subject about which I care deeply. Though my primary focus is the history of HIV/AIDS, I’ve also written on Hansen’s disease activism in the United States 1940-1960. While I think it’s fair to call myself an authority on this topic, one doesn’t need to be an expert to know that the language around this disease has changed.

What was once known as “leprosy” is now known as Hansen’s disease, so-named in honor of Gerhard Armauer Hansen, the Norwegian physician who discovered the bacillus responsible for the disease in 1973. Since that time, a small cohort of people (mostly Americans) living with Hansen’s have fought to eliminate the disease’s biblical name—and the still more offensive word, “leper”—from our collective consciousness. In fairness to Mother Jones, Wikipedia, and pretty much every other place you look on the Internet, plenty of people who are in-the-know (including many historians who study the disease) continue to refer to Hansen’s as “leprosy.” I cannot. I’m using my blog as a platform to spread the message of the people I researched and wrote about, who championed the quest to eliminate the l-words.

A woman with granulomas of the skin common in Hansen's Disease. Contrary to popular belief, Hansenites' limbs don't fall off. They do, however, suffer from neuropathy and bone resorption.

A woman with granulomas of the skin common in Hansen’s Disease. Contrary to popular belief, Hansenites’ limbs don’t fall off. They do, however, suffer from neuropathy and bone resorption.

It’s hardly surprising that the subjects of my study (now dead) were unsuccessful. After all, the stigma surrounding Hansen’s disease (the same stigma that the Mother Jones article only devoted two sentences to) is about as entrenched as stigma gets.

Did you know that, in addition to Kalaupapa, there was a colony in the continental U.S.? It’s true… that’s the one I studied. American citizens diagnosed with Hansen’s were forcibly interned in Louisiana’s Carville National Leprosarium into the late 20th century, even though scientists were by that time well aware that 95% of people are naturally immune to the bacillus that causes the disease. Discussing Kalaupapa without discussing Carville perpetuates the misperception that HD is an “exotic” disease, one that “real Americans” don’t contract.

Below are a few more facts that I consider “need to know” regarding Hansen’s Disease in the United States:

Hansen’s disease is the only diagnosis for which U.S. citizens have ever lost the right to vote.

Upon entering Carville, standard-operating procedure was to change one’s name, so that uninfected relatives on the outside would be safe from discrimination? That it was better to be assumed dead than “gone to Carville.”

Hansen’s patients weren’t allowed to marry each other, and were frequently sterilized.

Hansen’s, in addition to being very rare and hard to contract, is also easily treated with a combination of antibiotics. Early detection usually prevents the disabilities and deformities the infection used to cause.

I hope this brief introduction to the history of Hansen’s gives you enough context to appreciate why the words “leper” and “leprosy” are, or should be, no-nos. I could say more, but I think it’d be better to let the victims of Hansen’s discrimination speak for themselves. If I’ve piqued your interest, I’d highly recommend reading the memoirs I’ve included below.

I have no illusions that my little blog post will change the way major publications refer to Hansen’s disease—it arouses the interest of far more readers than it offends—but I hope it will make you think twice about the way you refer to Hansenites in your daily lives. They aren’t metaphors, they’re people.

Armadillos, on the other hand, aren’t people. Dehumanize them at will!

[i]. Lev. 13:46.

HANSEN’S DISEASE MEMOIRS:

  • Sidney Levyson, Alone No Longer: The Story of a Man Who Refused to Be One of the Living Dead (New York: Funk & Wagnalls, 1963) 41
  • Betty Martin, Miracle at Carville, (New York: Doubleday, 1963.)
  • Betty Martin, No One Must Ever Know, Edited by Evelyn Wells, (Garden City, New York: Doubleday, 1959).
  • Henry Kalalahilimoku Nalaielua and Sally-Jo Keala-o-Ānuenue Bowman, No Footprints in the Sand: A Memoir of Kalaupapa, (Honolulu, HI: Watermark, 2006).
  • José P. Ramirez,Squint: My Journey With Leprosy, (Jackson: University Press of Mississippi, 2009).
  • Neil White, In the Sanctuary of Outcasts: A Memoir, (New York: William Morrow, 2009).

“The Six Million Dollar Scholar” is the personal blog of Andrea Milne, a Ph.D. candidate in modern U.S. History at the University of California, Irvine. To get the story behind the blog’s name, click here.

The SMDS Listening List: History Podcasts

PART THREE OF THREE:

Sawbones

I’m going to put my cards on the table and say that, if the three history podcasts I’ve spotlighted here on SDMS were trapped in a burning building and I could only save one, it would be Sawbones. The youngest of the three podcasts (and another member of the Maximum Fun family of podcasts), Sawbones is also doing the most to make history not only accessible, but entertaining. I happen to really like the elevator pitch on their website, so I’m going to quote it here.

Dr. Sydnee McElroy and her husband Justin welcome you to Sawbones: A Marital Tour of Misguided Medicine. Every Friday, they dig through the annals of medical history to uncover all the odd, weird, wrong, dumb and just gross ways we’ve tried to fix people over the years. Educational? You bet! Fun? We hope!

Dr. and Mr. McElroy

Dr. and Mr. McElroy

Hope no longer, Dr. and Mr. McElroy! You certainly don’t need me to tell you you’ve succeeded (you have tens of thousands of listeners, after all) but I’m doing it anyway! This podcast does what so many fancy pants historians can’t: it uses humor to launch meaningful conversations about issues including, but not limited to, social justice, medical ethics, and consent.

While I’m certainly not the first person to sing the praises of this podcast, I can’t imagine that most of the folks reviewing the show are actual medical historians (well… ABD, but who’s counting). While some people might consider my scholarship peripheral to the field—a discussion for another day—the fact remains that several episodes of this show have focused on subjects about which I know a great deal. Not only were those episodes accurate, they were hilarious.

There is one exception here, and I was quick to call Dr. and Mr. McElroy out on it via the magical Twitter machine. The episode on “leprosy” was very accurate, but insufficient attention was given to the wishes of the patient community, which has been working for over half a century to try and eradicate the use of the words “leprosy” and “leper.” The correct terminology for the condition in question is Hansen’s disease (HD for short). While I understand why it might be necessary to use the “L word” in the episode title (like I just did in this aside), I felt like the McElroys missed a wonderful opportunity to advance the wishes of people with HD around the globe. Now, I’ve written a good bit on Hansen’s Disease activism, so it may be that my response to this episode was conditioned in part by an affection for the historical subjects in question, but I don’t think that invalidates the criticism.

That misstep aside, this show has consistently impressed me. Unlike a great many medical historians, the McElroys don’t treat doctors as superhuman, and DO treat patients as human. The result is a far richer story, and comedy that doesn’t reproduce the exploitation it chronicles. It’s also worth noting that, despite the fact that Dr. Sydnee McElroy was educated in the West and practices Western medicine, I don’t get the sense that she throws any shade on Eastern and indigenous medicinal traditions. It’s clearly not her bag, but she’s also devoting a tremendous amount of her time to demonstrating the ways in which Western medicine’s gotten it wrong. So there you go.

Long story short: neither of the hosts have any kind of advanced training in history, but they’re putting plenty of people who do to shame.

I want to close this review by saying that I fully intend on assigning some episodes of Sawbones in my classes. By pairing it alongside more “traditional” history texts, I think this podcast can help convince young people—young people who’ve been thoroughly steeped in anti-humanities rhetoric—that not only is history a lot of fun, it’s a field with the potential  for growth. We are not all a bunch of fogeys rolling around in the dust of ages. Some of us are actually pretty cool, and, you know… use the Internets. Thank you, Justin and Sydnee, for being my weekly reminder that I have an awesome job.

PS: Sydnee… if you’ve had your baby, a thousand congratulations! If you’re still counting the days, hang in there sister. You got this.