Context — April 1, 2016, 5:42 pm

The Separating Sickness

Five hundred family members of leprosy patients sue Japan; Rebecca Solnit explores how leprosy teaches empathy

Published in the June 2013 issue of Harper’s Magazine, “The Separating Sickness” explores how leprosy teaches empathy. The story is free to read in full through April 4. Subscribe to Harper’s for instant access to our entire 165-year archive.


From an Asahi Shimbun report, published March 30, 2016, on a lawsuit filed against the Japanese government by family members of leprosy patients who had been segregated from society.

More than 500 relatives of Hansen’s disease patients joined a mass lawsuit on March 29 seeking compensation for the government’s decades-long policy of segregating sufferers of the disease from society.
     The move came after an initial group of 59 plaintiffs filed the lawsuit with Kumamoto District Court seeking compensation of 5 million yen ($44,000) each and an apology from the central government. The claim is expected to be the last group submittal by relatives of former sufferers of Hansen’s disease, also known as leprosy.

Eddie Bacon was a forklift operator at Trident Seafoods in Akutan, Alaska. In the summer of 1999, he developed mysterious rashes on his hands, arms, and legs. He visited a doctor, who gave him a variety of ointments, but they did nothing. He grew weak, lost weight. He had trouble seeing. No longer able to earn a living, he moved in to his parents’ house in central California. There, at a New Year’s Eve party in 2000, he passed out, and his parents took him to the emergency room. He had green blisters on his hands, his weight had dropped to ninety pounds, and he couldn’t stand up by himself. The medical staff at the hospital regarded Eddie with puzzlement and dread, asking his parents to put on gloves, masks, and gowns when visiting him. Finally, after four weeks, an infectious-disease specialist solved the mystery. Eddie had leprosy. Although a quarter million new cases of leprosy were diagnosed worldwide in 2011, only about 173 of those were in the United States; it’s no surprise Eddie had a hard time getting a diagnosis. Once his symptoms were explained, though, his doctors could prescribe a venerable course of treatment: in June 2001, they sent him to the nation’s largest leprosy clinic, which had recently relocated to Baton Rouge from its historic home in Carville, Louisiana.

The Louisiana Leper Home was founded in 1894. Infected residents were provided free room and board and medical care, but for the first fifty years of the home’s existence, until the rules progressively relaxed in the late 1940s and early 1950s, they were denied the right to vote, to marry, to live with an uninfected spouse, or to leave the grounds. Children born to residents were taken away shortly after birth and put up for adoption. The Carville facility has been federally run since 1921, and the government allowed for the construction of a golf course and a lake, but there was also a cyclone fence topped with three rows of barbed wire and a jail to punish those who left the grounds without permission. In the 1950s, even after a cure for the disease had been found, escapees were still brought back in iron shackles.

Leprosy is really two diseases: the physical effects and the social response to them. In Hawaii, where leprosy was endemic in the nineteenth and twentieth centuries, it was called the “separating sickness.” Once diagnosed, Hawaiian sufferers were hunted down like outlaws and offered a choice of exile or death. Those who chose exile were sent to a bleak camp built below the great cliff at Molokai (the leper colony there didn’t close until 1969). And Hawaii wasn’t alone. For centuries, from India to Iceland, people with leprosy — most don’t like being called lepers — were ostracized. Only in the past sixty years have even a minority of leprosy patients received truly humane care.

The change started when doctors realized that leprosy, contrary to long-standing belief, is very nearly the least contagious contagious disease on earth: in more than a hundred years of Carville’s operation, no employee ever caught leprosy from a patient. Ninety-five percent of us are naturally immune to the disease, and the rest have a hard time catching it. If you contracted leprosy at any point before 1941, your illness would not have been treatable, but your prognosis would not necessarily have been dire. If you were very lucky, your immune system might eradicate the bacterium on its own, or you might manifest only skin problems — lesions, eruptions, thickenings, numb spots — and little more. (Then as now, many with untreated leprosy live decades beyond diagnosis, into old age.) If you were less lucky, you might endure the collapse of the cartilage in your nose, an infection of the throat that could require a tracheotomy, or a permanent swelling of the face called leonine facies. Worst of all, you might suffer peripheral neuropathy — an absence of sensation that can cause patients to lose fingers, toes, and feet; blindness; and a host of other problems.

In 1941, a highly toxic tuberculosis drug, Promin, was shown to eradicate the bacterium that causes leprosy. Promin was tested on patients at the Leper Home, who improved dramatically; it was called the miracle at Carville. Painful Promin injections were followed by dapsone pills, and by 1981 an even more effective multiple-drug solution was found. The disease is universally curable now with a year or two of treatment. If you are diagnosed early in countries such as the United States, you’re likely to be disease free and left with no evident disfigurement or damage. The problems of leprosy now lie elsewhere — in the lasting stigma against sufferers, in the lack of resources for treatment in the developing world, and in the very rarity of the illness in the developed world, where doctors may not diagnose it in time to prevent permanent harm.

Eddie Bacon was unlucky. He had no natural immunity. But he was also lucky: he was sent to Louisiana at a time when he could be treated for both the bacteriological and the social effects of his disease. After his initial treatment, Eddie returned to Baton Rouge regularly for therapy to teach him how to take care of his body, which has suffered some irreversible damage.

“It was a nice place,” he recalled when I spoke with him in 2010. “I was scared they were going to treat me bad, but when I went there, those people were touching me, they were hugging me, those doctors and nurses.” That physicality made him feel less like an outcast. At the clinic in Baton Rouge, he said, “it’s like I have a second family.” Eddie told me he’s known as a “miracle guy” because he survived one of the worst modern cases of leprosy recorded in the United States, one that struck harder and moved faster than the disease usually does. He’s had to have both feet amputated, has scarring on his hands and arms, lost an eye (it went blind and scared his nieces, so he had it replaced with a prosthesis), and, like many others with the disease, lost his eyebrows. But he is alive and he is free — and in December 2010 he got married.

Read the full story here.

Single Page

More from Rebecca Solnit:

From the July 2018 issue

Unmusical Chairs

From the March 2018 issue

Nobody Knows

Get access to 168 years of
Harper’s for only $45.99

United States Canada



October 2018


The Printed Word in Peril·

= Subscribers only.
Sign in here.
Subscribe here.

In February, at an event at the 92nd Street Y’s Unterberg Poetry Center in New York, while sharing the stage with my fellow British writer Martin Amis and discussing the impact of screen-based reading and bidirectional digital media on the Republic of Letters, I threw this query out to an audience that I estimate was about three hundred strong: “Have any of you been reading anything by Norman Mailer in the past year?” After a while, one hand went up, then another tentatively semi-elevated. Frankly I was surprised it was that many. Of course, there are good reasons why Mailer in particular should suffer posthumous obscurity with such alacrity: his brand of male essentialist braggadocio is arguably extraneous in the age of Trump, Weinstein, and fourth-wave feminism. Moreover, Mailer’s brilliance, such as it was, seemed, even at the time he wrote, to be sparks struck by a steely intellect against the tortuous rocks of a particular age, even though he labored tirelessly to the very end, principally as the booster of his own reputation.

It’s also true that, as J. G. Ballard sagely remarked, for a writer, death is always a career move, and for most of us the move is a demotion, as we’re simultaneously lowered into the grave and our works into the dustbin. But having noted all of the above, it remains the case that Mailer’s death coincided with another far greater extinction: that of the literary milieu in which he’d come to prominence and been sustained for decades. It’s a milieu that I hesitate to identify entirely with what’s understood by the ringing phrase “the Republic of Letters,” even though the overlap between the two was once great indeed; and I cannot be alone in wondering what will remain of the latter once the former, which not long ago seemed so very solid, has melted into air.

What I do feel isolated in—if not entirely alone in—is my determination, as a novelist, essayist, and journalist, not to rage against the dying of literature’s light, although it’s surprising how little of this there is, but merely to examine the great technological discontinuity of our era, as we pivot from the wave to the particle, the fractal to the fungible, and the mechanical to the computable. I first began consciously responding, as a literary practitioner, to the manifold impacts of ­BDDM in the early 2000s—although, being the age I am, I have been feeling its effects throughout my working life—and I first started to write and speak publicly about it around a decade ago. Initially I had the impression I was being heard out, if reluctantly, but as the years have passed, my attempts to limn the shape of this epochal transformation have been met increasingly with outrage, and even abuse, in particular from my fellow writers.

As for my attempts to express the impact of the screen on the page, on the actual pages of literary novels, I now understand that these were altogether irrelevant to the requirement of the age that everything be easier, faster, and slicker in order to compel the attention of screen viewers. It strikes me that we’re now suffering collectively from a “tyranny of the virtual,” since we find ourselves unable to look away from the screens that mediate not just print but, increasingly, reality itself.

Photograph (detail) by Ellen Cantor from her Prior Pleasures series © The artist. Courtesy dnj Gallery, Santa Monica, California
Among Britain’s Anti-Semites·

= Subscribers only.
Sign in here.
Subscribe here.

This is the story of how the institutions of British Jewry went to war with Jeremy Corbyn, the leader of the Labour Party. Corbyn is another feather in the wind of populism and a fragmentation of the old consensus and politesse. He was elected to the leadership by the party membership in 2015, and no one was more surprised than he. Between 1997 and 2010, Corbyn voted against his own party 428 times. He existed as an ideal, a rebuke to the Blairite leadership, and the only wise man on a ship of fools. His schtick is that of a weary, kindly, socialist Father Christmas, dragged from his vegetable patch to create a utopia almost against his will. But in 2015 the ideal became, reluctantly, flesh. Satirists mock him as Jesus Christ, and this is apt. But only just. He courts sainthood, and if you are very cynical you might say that, like Christ, he shows Jews what they should be. He once sat on the floor of a crowded train, though he was offered a first-class seat, possibly as a private act of penance to those who had, at one time or another, had no seat on a train.

When Corbyn became leader of the Labour Party, the British media, who are used to punching socialists, crawled over his record and found much to alarm the tiny Jewish community of 260,000. Corbyn called Hez­bollah “friends” and said Hamas, also his “friends,” were devoted “to long-term peace and social justice.” (He later said he regretted using that language.) He invited the Islamist leader Raed Salah, who has accused Jews of killing Christian children to drink their blood, to Parliament, and opposed his extradition. Corbyn is also a patron of the Palestine Solidarity Campaign and a former chair of Stop the War, at whose rallies they chant, “From the river to the sea / Palestine will be free.” (There is no rhyme for what will happen to the Jewish population in this paradise.) He was an early supporter of the Boycott, Divestment, and Sanctions (BDS) movement and its global campaign to delegitimize Israel and, through the right of return for Palestinians, end its existence as a Jewish state. (His office now maintains that he does not support BDS. The official Labour Party position is for a two-state solution.) In the most recent general election, only 13 percent of British Jews intended to vote Labour.

Corbyn freed something. The scandals bloomed, swiftly. In 2016 Naz Shah, Labour MP for Bradford West, was suspended from the party for sharing a Facebook post that suggested Israel be relocated to the United States. She apologized publicly, was reinstated, and is now a shadow women and equalities minister. Ken Livingstone, the former mayor of London and a political supporter of Corbyn, appeared on the radio to defend Shah and said, “When Hitler won his election in 1932, his policy then was that Jews should be moved to Israel. He was supporting Zionism before he went mad and ended up killing six million Jews.” For this comment, Livingstone was suspended from the party.

A protest against anti-Semitism in the Labour Party in Parliament Square, London, March 26, 2018 (detail) © Yui Mok/PA Images/Getty Images
Nothing but Gifts·

= Subscribers only.
Sign in here.
Subscribe here.

If necessity is the stern but respectable mother of invention, then perhaps desperation is the derelict father of subterfuge. That was certainly the case when I moved to Seattle in 1979.

Though I’d lived there twice during the previous five years, I wasn’t prepared for the economic boom I found upon this latest arrival. Not only had rent increased sharply in all but the most destitute neighborhoods, landlords now routinely demanded first, last, and a hefty security deposit, which meant I was short by about fifty percent. Over the first week or so, I watched with mounting anxiety as food, gas, and lodging expenses reduced the meager half I did have to a severely deficient third. To make matters even more nerve-racking, I was relocating with my nine-year-old son, Ezra. More than my well-being was at stake.

A veteran of cold, solitary starts in strange cities, I knew our best hope wasn’t the classifieds, and certainly not an agency, but the serendipity of the streets—handmade for rent signs, crowded bulletin boards in laundromats and corner grocery stores, passersby on the sidewalk; I had to exploit every opportunity that might present itself, no matter how oblique or improbable. In Eastlake, at the edge of Lake Union between downtown Seattle and the University District, I spied a shabby but vacant one-story house on the corner of a block that was obviously undergoing transition—overgrown lots and foundation remnants where other houses once stood—and that had at least one permanent feature most right-minded people would find forbidding: an elevated section of Interstate 5 just across the street, attended by the incessant roar of cars and trucks. The house needed a new roof, a couple of coats of paint, and, judging by what Ezra and I could detect during a furtive inspection, major repair work inside, including replacing damaged plaster-and-lath walls with sheetrock. All of this, from my standpoint, meant that I might have found a solution to my dilemma.

The next step was locating the owner, a roundabout process that eventually required a trip to the tax assessor’s office. I called the person listed on the rolls and made an appointment. Then came the moment of truth, or, more precisely, untruth, when dire circumstance begot strategic deception. I’d never renovated so much as a closet, but that didn’t stop me from declaring confidently that I possessed both the skills and the willingness to restore the entire place to a presentable—and, therefore, rentable—state in exchange for being able to live there for free, with the length of stay to be determined as work progressed. To my immense relief, the pretense was well received. Indeed, the owner also seemed relieved, if a bit surprised, that he’d have seemingly trustworthy tenants; homeless people who camped beneath the freeway, he explained, had repeatedly broken into the house and used it for all manner of depravity. Telling myself that inspired charlatanry is superior to mundane trespassing—especially this instance of charlatanry, which would yield some actual good—I accepted the keys from my new landlord.

Photograph (detail) © Larry Towell/Magnum Photos
Checkpoint Nation·

= Subscribers only.
Sign in here.
Subscribe here.

Laura Sandoval threaded her way through idling taxis and men selling bottles of water toward the entrance of the Cordova International Bridge, which links Ciudad Juárez, Mexico, to El Paso, Texas. Earlier that day, a bright Saturday in December 2012, Sandoval had crossed over to Juárez to console a friend whose wife had recently died. She had brought him a few items he had requested—eye drops, the chimichangas from Allsup’s he liked—and now that her care package had been delivered, she was in a hurry to get back to the Texas side, where she’d left her car. She had a …
Checkpoint on I-35 near Encinal, Texas (detail) © Gabriella Demczuk

Percentage of people who go to the bathroom in New York’s Penn Station who do not wash their hands:


Cell phones cause bees to behave erratically.

Paul Manafort accepts a plea deal; Brett Kavanaugh accused of sexual assault; Jeff Bezos gets into the kindergarten racketon the clock

Subscribe to the Weekly Review newsletter. Don’t worry, we won’t sell your email address!


Happiness Is a Worn Gun


Illustration by Stan Fellows

Illustration by Stan Fellows

“Nowadays, most states let just about anybody who wants a concealed-handgun permit have one; in seventeen states, you don’t even have to be a resident. Nobody knows exactly how many Americans carry guns, because not all states release their numbers, and even if they did, not all permit holders carry all the time. But it’s safe to assume that as many as 6 million Americans are walking around with firearms under their clothes.”

Subscribe Today