Haiti, Fukushima, Chernobyl: What do we learn from disasters?

It is now two years since the Tohoku earthquake and subsequent triple meltdown at the nuclear plant in Fukushima.  Sarah Phillips, an anthropologist who has spent most of her professional life studying Chernobyl and the Ukraine, has a very thoughtful piece on how similar the two nuclear disasters turn out to be.  It’s a long article, so here’s the tl;dr:

Pripyat

“Fukushima is Chernobyl. Independent of the system (Japanese, Soviet), nuclear technology requires disregard for the public, misleading statements, and obfuscation in multiple domains (medicine, science and technology, governance). As anthropologist Hugh Gusterson notes, “The disaster at Fukushima has generated cracks in what we might call the ‘social containment vessels’ around nuclear energy—the heavily scientized discourses and assumptions that assure us nuclear reactors are safe neighbors.” Comparing the nuclear accidents at Chernobyl and Fukushima shows that “peaceful” nuclear technology is anything but.”

Fukushima

This week, in Maternowska’s Reproducing Inequities, we have also been reading about Haiti and the spectacular failures of development organizations to effect significant or lasting change for poor Haitian women.  It has now been more than three years since Haiti’s massive 2010 earthquake, and life for many Haitians is not better.  The cholera epidemic that began in the country in October 2010 continues to claim Haitian lives.  The same patterns Maternowska identifies for Haiti’s reproductive health and family planning policy have played out in the wake of Haiti’s natural and unnatural disasters: a lot of money spent very unwisely, and then a discourse that blames Haitians and “culture” for the lack of results.  We are left with the sense that Haiti, like other regions of extreme poverty, is hopelessly undevelopable, and so funding is limited to basic humanitarian interventions addressing immediate needs, rather than addressing the underlying structural factors that relegate Haiti to perpetual vulnerability to the next disaster.

haiti_011113_rebuild_dg_06_14744017

Paul Farmer and Catherine Maternowska both identify this sense of hopelessness for what it is: a disavowal, a racist cop-out, and a justification for continuing the same development strategies that fail to address the actual long-term needs of poor people, despite overwhelming evidence of their inadequacy.  The real tragedy that emerges from reading Maternowska, or following Farmer’s tremendous success in the country with his clinic and with Partners in Health, is the recognition that developing Haiti and alleviating poverty is not actually that difficult.

The last lepers, and the lack of African surgeons: two articles in The Atlantic

The Atlantic had two good articles out over the winter break that I’m just getting to now; I’m posting them here not because they’re extraordinarily well-written or insightful, but because they’re about topics that deserve greater attention.

The first considers leprosy and the difficulty of eradicating a disease.  In medical anthropology class, I had mentioned that in human history we have successfully eradicated only one disease (of humans) globally: smallpox.  Given our resources in global health in the 21st century, why is it so hard to accomplish the eradication of disease?

Leprosy is a good example of how hard this push can be.  It’s hard to study and the routes of transmission aren’t that well understood (not unlike its close relative, Buruli ulcer).  Worse, it develops very slowly, is easily misdiagnosed, and treatment efficacy is limited.  And social stigma, although its role can easily be exaggerated (something we’ll be thinking about in class), has also played a significant role in rendering the disease and its victims invisible.

The second article concerns a topic that badly needs more discussion: the astounding lack of qualified medical personnel to treat sub-Saharan African populations (the article references a study that finds 9 surgeons per 6,000,000 people in Sierra Leone; I would guess that this is only slightly lower than the West African average).  The results are predictably horrific: inadequate care, malpractice by the undertrained and/or under-equipped, and a system that has little power to retain the qualified.  It’s not a perfect article, but I’m glad that it does two things beyond simply raising the subject: it references Paul Farmer and Jim Kim’s paper on the need for surgeons in the developing world; and it mentions that half of US foreign aid in global health goes to getting ARVs for the HIV+, but a negligible amount goes to training qualified surgeons in poor countries.  Many doctors I work with themselves note this strange disparity between funding and the most pressing medical needs.

The homeless guy in the apartment next door

by Jonathan Bartlett for LA Weekly

William had been homeless for about 20 years when he received a $200,000 legal settlement. One of his first actions was to do what many would applaud: he got off the streets and out of the broken-down hotels of Los Angeles and rented an apartment.  What he did not do was bathe, wash his hair, change his clothing, wear shoes, or alter his lifestyle of keeping all of his possessions in shopping bags.

The very day he moved in, the leasing agent left soap, shampoo, towels, and a change of clothing in his apartment.  William was insulted and disgusted that his home had been “contaminated.”  By the next week, neighbors were making complaints about the foul odor they said was seeping from his unit.  A veritable battlefield of potpourri and deodorizers was laid out between his door and the next and eviction threats began.

Read the full story on the LA Weekly site: The Man Who Smelled Too Much

I couldn’t help think of a piece by Bourgeois (From Jibaro to Crack Dealer: Confronting the Restructuring of Capitalism in El Barrio) that we read in Anthropology Theory this week.  The “common sense” of the other residents of the nice apartment building is foreign to William.  If the problem is the odor leaving his home, then fine: he squirts some peppermint soap under the door and calls it good.  His neighbors, the building management, and the eventual jury he faces can’t comprehend why he doesn’t simply bathe, put on shoes, and change his clothes.  The foreman is baffled why William won’t cut his hair, since “it grows back.”  There is some victim-blaming going on, but what about the rights of his neighbors?  The comments on the article make for an interesting read, as well.

The forgotten victims of Breast Cancer Awareness Month

Health on Today: ‘Pinktober’ ignores breast cancer patients who can’t be cured, some say  From the article:

“I can’t celebrate because I’m not a survivor,” said Clark, who was diagnosed in 2010 with an aggressive Stage III cancer that quickly advanced. “There’s not a cure.”

“The message has really been skewed,” says Knackmuhs, 61, of Wyckoff, N.J., who was diagnosed with Stage IV disease in 2009. “It’s so associated with selling products and shopping and dubious product endorsement.”

I’m always skeptical of something that is treated like a universal good — “I was going to spend the money/go to the event anyway and now some of that money goes to breast cancer awareness!” — especially when large corporations enthusiastically jump on board. After doing some research into this for a presentation I did for class last semester, I’m collecting examples of pink co-branding this October with hopes of doing a full study on the topic in the future.

For now, I’m going to skip my rant and let others speak. Read the article linked above, and from my presentation, these quotes:

  • “My disease has become a marketable commodity and nothing more.  The sad irony in all of this is that I believe Komen’s approach to cause-marketing has only served to undermine the seriousness of this disease in the public’s perception.” – Rachel, who shared her story of metastatic breast cancer at cancerculturenow.blogspot.com, until she died this February  (If you can stand the heartbreak, read her husband’s post about enduring a “Paint The Town Pink” campaign less than 3 months after Rachel’s death.  It’s agonizing.)
  • “Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking. Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear.“ – Gayle Sulik in Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health
  • “Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover… is that everyone … seems to assume that you are now the local poster chick…everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you.“ – A breast cancer patient named Kathi

Paul Farmer at The Feast

Paul Farmer’s talk at The Feast — with Arcade Fire — on the 25th anniversary of the founding of Partners in Health:

http://new.livestream.com/feastongood/challenges/videos/4460531

(Sorry, can’t seem to embed this one.  The audio quality improves after the whispery first minute or two.)

The ethics of drug testing

As we prepare for Paul Farmer’s lecture today, you may recall how the reading by Farmer that we read last semester began: a comparison of AIDS research on sub-Saharan Africans to the infamous Tuskegee experiments.  Drug tests have always been conducted on the most marginalized sections of our population- which raises the question, over and over, of the degree to which informed consent and acceptance of risk are really possible or ethical in these contexts.

Since Phase I drug testing on prisoners was made illegal in 1980, America has depended on volunteers to test drug safety and efficacy. A recent ethnography by Roberto Abadie, The Professional Guinea Pig, has been a big contribution to the surprisingly small body of anthropological work on who these people are (he spends time with transients, anarchists (!) and the HIV-positive), although it does not really tackle the ethical context.  The Chronicle of Higher Education has a nice write-up of his work, and this article is a pretty great overview of the subject in all of its ethical murkiness.

But as with so many things in our globalized economy (think of the work we read by Scheper-Hughes on organ trafficking), drug research often moves to places with even fewer protections than the most marginalized Americans enjoy.  This week’s NYT has an excellent article about Russians eagerly signing up for drug trials because it offers their only chance to access modern medical care.  Pharmaceutical companies take advantage, using the results of Russian trials to win approval for the drugs from the FDA.