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The Spirit Catches Lia Lee, RIP
September 15, 2012 8:52 AM   Subscribe

First published in 1997, Anne Fadiman's book The Spirit Catches You and You Fall Down, a chronicle of a Hmong refugee family's interactions with the American medical system in the face of a child's devastating illness, has become highly recommended, if not required, reading for many medical students and health care professionals, over the past 15 years quietly changing how young doctors approach patients from different cultures. On August 31, with little publicity, Lia Lee, the young girl who inspired the book, after living most of her life in a persistent vegetative state, quietly died [NYT obit].
posted by Slarty Bartfast (79 comments total) 49 users marked this as a favorite

 
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posted by Mercaptan at 9:09 AM on September 15, 2012


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posted by marsha56 at 9:16 AM on September 15, 2012


They made me read that for an anthro class in college. I
dont remember it, but I was surprised to read the article. I didn't know she had still been alive or I forgot.

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posted by discopolo at 9:16 AM on September 15, 2012 [1 favorite]


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posted by smangosbubbles at 9:17 AM on September 15, 2012 [1 favorite]


(fantastic book, btw. highly recommended.)

Thanks for making this post.
posted by marsha56 at 9:17 AM on September 15, 2012


I was doing a very boring open house and found this book on the seller's bookshelf so I spent three hours reading it. When the open house was over and the owner came home, I asked if I could borrow it and she said I could keep it. She believed in letting books go after reading them. I finished reading it over the next day or so. It was a fascinating read.

Lia's story was the perfect storm of clashing cultures and poor communication.
posted by shoesietart at 9:29 AM on September 15, 2012 [9 favorites]


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posted by dinty_moore at 9:29 AM on September 15, 2012


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posted by skye.dancer at 9:36 AM on September 15, 2012


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The Spirit Catches You and You Fall Down is one of the most humane, insightful, beautiful books I have read. My sympathies go out to Lia's family on their loss at the end of this long and incredibly difficulty journey.
posted by grimmelm at 9:37 AM on September 15, 2012 [10 favorites]


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posted by jonp72 at 9:46 AM on September 15, 2012


I love, love, love this book.

I'm certain that Lia wouldn't have lived this long away from her family. As someone with a developmentally disabled family member (who passed away last year after a comparatively long, happy life), I'm also certain that her life gave others' purpose and focus.

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posted by Madamina at 9:47 AM on September 15, 2012 [4 favorites]


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posted by spinifex23 at 9:50 AM on September 15, 2012


I enormously admire her family, able to go so long in providing loving care. I know that I am not capable of such devotion, and I regret this character fault.
posted by francesca too at 9:52 AM on September 15, 2012 [2 favorites]


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posted by cybercoitus interruptus at 9:53 AM on September 15, 2012


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posted by Catchfire at 9:56 AM on September 15, 2012


Oh no. What a sad story.
posted by Maisie at 10:08 AM on September 15, 2012


I haven't read the book, but I'm not quite sure that I understand the praise for her family. Yes, they treated her with an incredible amount of love and care after she became permanently disabled, but weren't they largely culpable for that disability?

I'm not trying to pick a fight or point fingers, but I feel like there must be something that I'm missing. Was this simply a language barrier thing, or was there more to it than that? This doesn't sound like a typical case of an immigrant family distrusting western medicine, given that they visited the hospital hundreds of times (and yet they failed to heed the advice of the doctors). What am I missing?

This is going on my reading list, but in the meantime, can somebody fill in the blanks in the NYTimes and Wikipedia articles?
posted by schmod at 10:14 AM on September 15, 2012


This is going on my reading list, but in the meantime, can somebody fill in the blanks in the NYTimes and Wikipedia articles?

You really have to read the book, I think. I'm not being flip. It is a 300-page answer to your question.
posted by liketitanic at 10:27 AM on September 15, 2012 [9 favorites]


feel like there must be something that I'm missing. Was this simply a language barrier thing, or was there more to it than that?

You are indeed missing something, namely, experience speaking a foreign language in a country where there are no interpreters to help you and no one understands a word of your native language, and in addition, your frame of reference does not match your host country's, so any attempts at literal translation mean that the people you're speaking with see you attempting their language, hear what sounds like nonsense according to their frame of reference, and so they discount your communications, as accurate as they may be. From the NYT obituary:
At Merced Community Medical Center, a resident misdiagnosed her condition. Communication was impossible: the Lees spoke no English, and the hospital had no Hmong interpreter.

“My parents weren’t able to convey exactly that she was having seizures,” Lia’s sister Mai, now 32, said in an interview on Wednesday. The word ‘seizure’ didn’t come out. To them, they saw it as her soul being tampered with by something of a different realm.”
Similar confusion happens to me all the time, still, in France, when I go to the doctor. And our frames of reference are relatively congruent, I studied French and Latin, have citizenship, and have lived here for more than 12 years now.
posted by fraula at 10:39 AM on September 15, 2012 [25 favorites]


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-another medical student inspired by Lia Lee.
posted by The White Hat at 10:55 AM on September 15, 2012 [4 favorites]


Keeping a body mechanically alive past the point the mind either no longer exists or has any way of interacting with the world again, seems like yet more of our culture's profound insanity regarding what human life is or means
posted by crayz at 11:03 AM on September 15, 2012 [8 favorites]


I think the West Coast doctors are on to it now, but for a long time they couldn't figure out what was causing an epidemic of kidney failures among the Hmong. Turned out that it was normal to eat massive amounts of Advil in that community.
posted by StickyCarpet at 11:30 AM on September 15, 2012 [1 favorite]


I haven't read the book, but I'm not quite sure that I understand the praise for her family.

I don't necessarily think the family is praise worthy, and that's not what is notable about the story. I mean, sure they loved their daughter and suffered much for their devotion. What's notable about the story is how vastly different people from different cultures can view the same situation and the problems it causes when those views come into conflict with each other. Personally, I think it's easier to sympathize with a family who understands nothing of the language and culture of the land they find themselves in, who is watching their loved one suffer than the hospital full of employees who were too busy to ask why their instructions weren't being followed. But it's an extremely thorny issue, one that people ought to struggle with, and if it interests you, I would say that this is an extremely important book to read, it has certainly changed nearly everything about how I approach my work.

I blogged about it today after making this post today, when I realized I would take over this thread if I started commenting. I am not going to link to it, but it's easy enough to find.
posted by Slarty Bartfast at 11:31 AM on September 15, 2012 [2 favorites]


This doesn't sound like a typical case of an immigrant family distrusting western medicine, given that they visited the hospital hundreds of times (and yet they failed to heed the advice of the doctors). What am I missing?
This is exactly why this book is required reading in so many anthropology courses. Viewing members of another culture through the lens of our own culture is very dangerous. Ascribing blame based on our cultures attitudes of responsibility is not effective when dealing with a culture that asserts that there are causes beyond human action for things. Neither belief system is any more "right" or "wrong" than the other, though rationalist and empirical systems can provide prevention. This case is a very well written in depth examination of how there is no such thing as a "typical" immigrant family distrusting. It's not necessarily about trust in the outset. It's about world views that don't overlap very well, and how we can approach making sense of the situations on both sides of the table because immigrants are constantly expected to be "flexible" and "understanding" of "their new culture" but medicine and other fields have a long way to go in practicing what they preach (being more flexible and understanding"). It also demonstrates that no matter how well you explain what you perceive, the person you are explaining it to might not be able to understand.

A common example of medical anthropology dealing relatively well with cultural differences is malaria. Some populations believe(d) that witchcraft causes malaria, while empirical evidence shows that it's spread by mosquitoes. Involving the community in studying the disease process and getting their help in brainstorming ways to prevent and treat infections is more effective than telling them it's their fault if they get sick and didn't have mosquito nets in place (because they were busy protecting themselves from people who they believed wanted to harm them).

Filling in the blanks on Nia's case really does require reading the book. It is fascinating and heartbreaking and really can set the groundwork for continuing to extend your circle of awareness.

This brings me to the "fundamental attribution errors" that get discussed in Sociology/social psychology. When bad/unpleasant things happen to you, you look out at the world and see your circumstances - if your epileptic child becomes brain damaged you are more likely to think the doctors didn't react quickly enough. If you crash your car you are more likely to think about the icy patch of pavement. If you don't get hired for a string of jobs you are more likely to think about how the interviewer seemed like an incompetent jerk.

When bad things happen to other people, you also look out and see the people. You are more likely to think "their choices" cause them to become ill, or exacerbated the illness. You are more likely to think, "they should have been paying more attention and not driving so fast," when you hear someone crashed on an icy patch of road. If someone else doesn't land a job, you think there might be something wrong with them that they can't get hired - maybe they aren't trying hard enough, or maybe they aren't very smart.

In study after study, the suggestion ends up being "before you blame other people for all of their problems, look at their situation, and really consider how that impacts their ability to succeed."

(the attribution error works in reverse - when we succeed, we want all the credit because we are awesome and worked really really hard. When others succeed, we see their rich parents/their ivy league connections/maybe she slept her way to the top instead of being actually qualified. And again, it's important to look to the situation to really assess what happened.)

And indeed, this family did not seek praise or fame for taking care of their daughter. This is just what you do for them. You take care of your family.

Ok. One more interesting Hmong health thing Sudden Unexplained Nocturnal Death Syndrome, which Shelley Adler covered very well in her book Night Terror. Hmong male immigrants were dying in the middle of the night with no explanation. Read the book to learn how American Medical Science clashed with Hmong spiritual explanation.
posted by bilabial at 11:41 AM on September 15, 2012 [51 favorites]


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posted by languagehat at 11:56 AM on September 15, 2012 [1 favorite]


I read this book nearly a decade ago, and one of the parts that sticks out the most for me was the passage where the aide (?) teaches herself to write in Hmong and helpfully leaves a sticky note on the fridge detailing when and how all of Lia's medications should be taken ... not realizing that Lia's family was illiterate.

No matter how much work one puts in, no matter how good someone's intentions are, it's not worth anything unless they question their basic cultural assumptions and try to communicate past them.
posted by dinty_moore at 12:07 PM on September 15, 2012 [5 favorites]


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This book was given to me after my epilepsy diagnosis. It's a very touching story that had me crying and laughing through-out the read. It is challenging enough for an American to talk to an American doctor - often my frame of reference and my cultural experiences clashed enough with the very different experiences of medical professionals. The experiences of Lia, her family, and the professionals trying to help them left me motivation to not give up no matter how hard it was to get appropriate treatment.


(Plus "the spirit catches you and you fall down" has been my favorite description of what it feels like to have a seizure.)
posted by _paegan_ at 12:26 PM on September 15, 2012 [4 favorites]


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posted by ignignokt at 12:35 PM on September 15, 2012


I haven't read the book, but I'm not quite sure that I understand the praise for her family. Yes, they treated her with an incredible amount of love and care after she became permanently disabled, but weren't they largely culpable for that disability?

No, it's rather complex. You should read the book.

Some forms of epilepsy expose holes in medicine, at least the medicine of the '80s, and this was one of them. Those holes are extremely uncomfortable places to be in, and some doctors make it worse by not admitting what they don't know. Epileptic goes over a similar case, taking place mostly in the seventies.
posted by ignignokt at 12:44 PM on September 15, 2012 [2 favorites]


One more interesting Hmong health thing Sudden Unexplained Nocturnal Death Syndrome, which Shelley Adler covered very well in her book Night Terror. Hmong male immigrants were dying in the middle of the night with no explanation.

Sleep Paralysis, it looks like is the title. There is an interesting summary and discussion of the book here--thanks for the tip.
posted by flug at 1:06 PM on September 15, 2012 [4 favorites]


My mom's teaching a course in medical ethics (I think? Something along those lines) and this is one of the books in her syllabus. I wish I'd read it sooner. It's a heartbreaking and eye-opening story and I'm grateful to Lia's family for sharing it with Fadiman and the world.

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posted by Metroid Baby at 1:11 PM on September 15, 2012 [1 favorite]


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When I TAed for a class on Shamanism, I widely recommended this book so students could get out of their minds and try seeing life another way, because simply saying "group X believes Y" didn't cut it. A wonderful book.
posted by flibbertigibbet at 1:33 PM on September 15, 2012


Here's what you're missing [from the NYTimes Obit]:
Lia’s seizures continued; epilepsy was eventually diagnosed and anti-seizure medication prescribed. But to her parents, qaug dab peg was literally a mixed blessing: on the one hand, Lia’s soul had been taken from her and she needed it back; on the other, her condition portended spiritual giftedness, something many traditional cultures ascribe to epilepsy. Perhaps, the Lees believed, Lia was destined to become a shaman herself.

The Lees did not always give Lia her medication, Ms. Fadiman wrote, because they did not want to interfere with qaug dab peg entirely.

To encourage her soul’s return, her parents gave her herbs and amulets. She was sometimes visited by a Hmong shaman, who performed a ritual that included chanting, beating a gong and sacrificing a chicken or pig. (The strings around Lia’s wrist noted by Ms. Fadiman are used in Hmong tradition to help protect people from malevolent spirits.)
posted by Chekhovian at 1:33 PM on September 15, 2012 [2 favorites]


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posted by nangua at 2:05 PM on September 15, 2012


I actually really hated the book. (Like everyone else, I had to read it for a folklore class.) It's eminently readable and fairly enjoyable, that's not my complaint. Right at the beginning, Lia's birth is recounted in what's supposed to be almost a humorous manner. It's a bit of a farce--somehow a hospital in the Central Valley had no translator who could speak Hmong, so they eventually found a janitor to translate. But it's apparent that Lia's mother had seemingly never set foot in the hospital before she went into labor, no one had told her what to expect, no one could tell her what was going on and so on. The poor woman must have been terrified and we're somehow meant to laugh at this situation she's in? That just sort of coloured the whole book for me. Fadiman does try hard not to judge the family (though the person who wrote the review in the 'interactions' link maybe gives her less credit than I do), but I couldn't escape the feeling that we're meant to view them as some sort of strange species.
posted by hoyland at 2:34 PM on September 15, 2012 [2 favorites]


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posted by trip and a half at 2:34 PM on September 15, 2012


read the nyt article today, and found it a bit lacking, but it did inform me of Lia Lee's death so
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On the subject of the Hmong and healthcare I have some experience, as I married into a Hmong family, and not long afterwards had to negotiate my father-in-law's cancer treatment in the Vietnamese medical system. I will not bore you by detailing the horrors of attempting to get treatment for an ethnic minority person in Vietnam; he eventually had surgery to remove a tumor on his leg the size and shape of a cauliflower. This extended his life by a year, which enabled him to finish building a house for his son.

It didn't have to be so. He had hidden his tumor from everyone but the Tsi Neng (shaman) for almost a year. He relied on shamans for that fatal year until he finally swallowed his pride to ask his daughter's family for help. His tumor should have been survivable. Belief in his shamans cost him his life I'm certain.

That said, his fear of the vietnamese medical system was well-founded. had he not had a westerner as an advocate he'd have been left for dead.

I've sat through 3 shaman ceremonies and obtained a very sore arse in the process. They typically last 6 to 8 hours and involve the shaman riding a wooden horse to visit the spirit world to speak in tongues to persuade the sick person's spirit to return to them.

My impression is that Hmong shamanism works well for what we would call psychological issues, as it involves the whole community and is a great reminder for the sick person that they are loved and cared for. Obviously it has little medical benefit for cancer or other serious diseases.

I would love to be in a position to help set up a system to train the shamans in recognizing common, treatable conditions like diabetes and encourage them to refer patients for "supplementary" treatment with western medicine in such cases. The Hmong believe strongly in their medical metaphor as it's an extension of their general animism (spirits are in everything), so it's best to work within that system to improve access to care for diseases that western medicine treats well. For diseases like depression and anxiety that western medicine punts on or simply suppresses the sypmtoms, the Hmong are better off with their Tsi Neng.
posted by grubby at 3:14 PM on September 15, 2012 [31 favorites]


I haven't read the book, but I'm not quite sure that I understand the praise for her family. Yes, they treated her with an incredible amount of love and care after she became permanently disabled, but weren't they largely culpable for that disability?....

Here's what you're missing [from the NYTimes Obit]:... The Lees did not always give Lia her medication, Ms. Fadiman wrote, because they did not want to interfere with qaug dab peg entirely.

To encourage her soul’s return, her parents gave her herbs and amulets...


It doesn't seem like schmod is missing that - your quote states that due to their beliefs the family went against the advice of western doctors and probably allowed the patient's state to degenerate. That may not be true, given how often western medicine fails in treating certain kinds of epilepsy anyway, but if this really is a case of culture clash and not just one of medical tragedy (i.e., if it's known that she could have been saved by the medications), it seems like one could bemoan the difficulty of communication, but not support the choices ultimately made.

If the Hmong family were replaced by an american family who chose to pray to jesus and seek the help of a local faith healer instead of taking the prescription, would it be the same story?
posted by mdn at 3:27 PM on September 15, 2012


If the Hmong family were replaced by an american family who chose to pray to jesus and seek the help of a local faith healer instead of taking the prescription, would it be the same story?

Yes, I have no issue with judging each equally primitive. Actually I might be more harsh on the fundies, as they lack the excuse of a true language and culture barrier.
posted by Chekhovian at 3:32 PM on September 15, 2012 [1 favorite]


Thanks for the news and the cogent comments. This remains one of the best books I have ever read on culture. It was exceedingly informative, so insightful, and so well written. I'm sorry for Lia Lee's family after their struggles.
posted by Miko at 3:34 PM on September 15, 2012


Those who are eager to judge the family as "primitive" should read the book for the lengthy component of Hmong cultural context and the immediate pre-immigration status of that community in Vietnam. The situation, despite what are tempting superficial similarities to propose, is really not equivalent to a refusal of treatment by an American family of Christian Scientists, or similar.
posted by Miko at 3:35 PM on September 15, 2012 [9 favorites]


If different inputs yield the same output...

And being there's nothing wrong with being primitive/ignorant. What matters is that you try yo remedy that state.
posted by Chekhovian at 3:43 PM on September 15, 2012


Had they been here long enough to even begin to assimilate, that would be a reasonable enough expectation. They were kind of preoccupied with recovering from the war that tore apart their entire ancient culture, decimated all of their families, and resulted in an unwilling resettlement, for their own protection, in a US community which was fairly hostile to them. I'm sure they'll get right around to "remedying their ignorance" when they've had more time to enjoy some first-world privileges like not being recruited by a massive world power to carry water in battle for you, and then being abandoned by that power for decades, and barely surviving while being shunted around undersupplied and underserviced Asian refugee camps until pressure from the UN forced the US to step up to its responsibility to resettle this group of people who they had used, thrown away, and no longer had a home in the world.

I imagine that their "primitive" religion was a great source of solace during a time when the enlightened West conveniently ignored them. Now that everything is all better, perhaps they'll catch up with our degree of wisdom.
posted by Miko at 3:53 PM on September 15, 2012 [38 favorites]


You have to forgive me Miko, not all of us are blessed with a masters degree in moral/cultural relativism. Anyway, I'm fine with grading then on a curve. That's basically what I said yo begin with, that the American fundies would look worse in comparison.
posted by Chekhovian at 3:58 PM on September 15, 2012


You don't need a Master's degree. All you'd have to do is read the book before you decide how the people should have acted, if they were only as smart as you.
posted by Miko at 3:58 PM on September 15, 2012 [10 favorites]


Does anyone disagree that they should have tried to save their daughters life? Do you think it was "good" for them to the Shamanism magic flow or what have you?

Now so as to how blame they deserve for the death, given their unfortunate culutural heritage...that's a hard question, whose true answer probably can't be concretetly determined.
posted by Chekhovian at 4:13 PM on September 15, 2012


Does anyone disagree that they should have tried to save their daughters life?

From their perspective, that's what the shaman was there to do.

Their cultural heritage isn't "unfortunate." It's disadvantageous in a lot of ways. So is yours. So is mine.
posted by rtha at 4:28 PM on September 15, 2012 [6 favorites]


It was certainly unfortunate for their daughter.
posted by Chekhovian at 4:38 PM on September 15, 2012


I couldn't escape the feeling that we're meant to view them as some sort of strange species.

I don't know what the author's feelings were, but I think the target audience were people who did view them as a strange species, or at least people who couldn't conceive why loving, reasonable parents wouldn't hand their child willingly over to science. Putting yourself in their shoes sounds like an obvious thing to do, but plenty of people simply don't do it, or don't even know where to start when the culture and experience is so different from their own.

(I say, feeling the collective rolling of third culture kids' eyes at me)
posted by dinty_moore at 4:52 PM on September 15, 2012 [2 favorites]


And btw, so its disadvantagous but not unfortunate? Wtf Rtha? That's some impressive graduations in vocabulary.
posted by Chekhovian at 5:01 PM on September 15, 2012


It was certainly unfortunate for their daughter.

You have absolutely no idea what you're talking about, not having read the book.

If this was all as obvious and simple as you imagine, there would be no book.
posted by Miko at 5:03 PM on September 15, 2012 [4 favorites]


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posted by a hat out of hell at 5:04 PM on September 15, 2012


Well if her death could have prevented had she been born to parents that didn't believe in magic, then it was unfortunate. If it could not have been prevented...then none of it matters except as human tragedy.

Of course we can't know for certain that it was preventable, but that's not the point we're discussing.
posted by Chekhovian at 5:10 PM on September 15, 2012


Her death could also have been prevented if she had never encountered an American or even a Western medical context. What a human tragedy. Indeed.

I am truly amazed that the self-declared champion of reason is content to spout generalities about a situation he has absolutely no data about. You're quite visibly making assumptions that are incorrect, working from a lack of evidence, which you link to unsupportable conclusions that, in reality, are not the result of a reasoning process but represent your true starting point for the argument - a personal ideology.

Why don't you read the damn book.
posted by Miko at 5:19 PM on September 15, 2012 [10 favorites]


And btw, so its disadvantagous but not unfortunate? Wtf Rtha? That's some impressive graduations in vocabulary.

Calling the family's culture 'unfortunate' puts the blame on them (which, to be fair, is precisely what you're trying to do). rtha is suggesting that we are all influenced by our culture and that this is arguably disadvantageous for everyone. For instance, in this case, no one thought to, say, try to enlist the shaman's help in working with the family. Maybe that would have been impossible. Or maybe it would have worked really well. But if you're busy getting caught up in the fact that the family believes in 'magic', you're being put at a disadvantage by your own culture because you're not bloody well trying to work with the situation you've been handed and instead being caught up in how 'right' you are and how 'unfortunate' the people you're meant to be helping are.
posted by hoyland at 5:20 PM on September 15, 2012 [4 favorites]


And being there's nothing wrong with being primitive/ignorant. What matters is that you try yo remedy that state.

The doctors were also in a state of ignorance. They, too, had a language and culture barrier. They also had far greater resources than did Lia's family. But they're not solely to "blame" either.

Assigning blame and casting judgements are really unhelpful, especially in medical and public health contexts, if your goal is to get people to understand and adhere to a treatment regimen. If that's not your goal, then okay, I guess.

Really, read the book. I'm not here to fight with you.
posted by rtha at 5:33 PM on September 15, 2012 [4 favorites]


It seems to me that a FPP that's impossible to talk about without having read the book is not a great FPP in the first place.
posted by Joakim Ziegler at 5:36 PM on September 15, 2012 [4 favorites]


There's a meTa now.
posted by rtha at 5:48 PM on September 15, 2012


It seems to me that a FPP that's impossible to talk about without having read the book is not a great FPP in the first place.

The links are fairly substantial. If one cared to, I suspect one could contribute positively to the thread having read the links. It is, however, sort of inevitably going to be a weird thread because it's such a commonly assigned book, meaning a good number of the participants will have other information.
posted by hoyland at 5:50 PM on September 15, 2012 [2 favorites]


It's entirely possible to talk about it. What's not so possible is to arrive at a conclusion like "the family was to blame because they believed in magic" based only on the information contained in the links. The book is widely read - in this thread alone you can see how many people either read it on their own or for an assignment - and had a lot of impact.

You could make the same comment about To Kill a Mockingbird or Huckleberry Finn, and we've had threads about those books.
posted by Miko at 5:53 PM on September 15, 2012 [1 favorite]


This sounds like a book I would love. Thanks for the link - I'm going to track it down at my public library.
posted by ThatCanadianGirl at 5:56 PM on September 15, 2012


It's a beautiful book.

And my condolences to Ms. Lee's family and friends. A terribly sad story reaches an ending.
posted by Sidhedevil at 7:16 PM on September 15, 2012


What's not so possible is to arrive at a conclusion like "the family was to blame because they believed in magic" based only on the information contained in the links.

Nor was that ever my conclusion. There was supposed to be a "much" in this comment (stupid android phone/typing things on a train), so maybe that's the confusing point:

Now so as to how much blame they deserve for the death, given their unfortunate culutural heritage...that's a hard question, whose true answer probably can't be concretetly determined.
posted by Chekhovian at 7:26 PM on September 15, 2012


This is going on my reading list, but in the meantime, can somebody fill in the blanks in the NYTimes and Wikipedia articles?

Oh, I found a blank to fill in, which is in one of the linked articles: "Over the next four years Lia's anticonvulsant prescriptions changed 23 times." Two systems clashed, both equally culpable. Her family had no way to keep up with what doctors assumed they understood.
posted by liketitanic at 8:12 PM on September 15, 2012 [2 favorites]


23 times

Now that's pretty fucked up. And a better way to make a point than vague excoriations about book reading.
posted by Chekhovian at 8:21 PM on September 15, 2012 [2 favorites]


Yeah, I got that from RTFA in the post.
posted by liketitanic at 8:36 PM on September 15, 2012 [10 favorites]


There are many events that happened to the family that compounded to destroy any helpful relationships with their medical practitioners. These included language barriers, myths the family had heard about the practices of Western medicine, the fact that the child was removed from their home to a possibly abusive home for a year, the constant changes in medicine, the fact that the medicines themselves had very concerning side effects, misdiagnoses, hospital staff and doctors managing their own frustrations very poorly, racism, a political context that had relocated this family to an area in which social services were not in place to keep up with their needs and assist with their integration, deceptions and attempts to recover control on the part of the family, an economic context, and still other factors. It's an exceedingly complex, detailed, and heartbreaking story of total cultural disconnect between groups of people who all meant 100% well all the time.

Here are some links that might provide more detail: A multipage site offering some theoretical orientations, a consideration of the clash of contexts. There are a lot of papers out there on the implications of incidents like these for medical practice. Effective medical practice requires cultural competence and the ability to recognize when a disconnect is harming treatment or preventing positive outcomes, and to identify and exploit the resources and practices necessary to bridge that gap, even when they are not traditional or not typically considered the purview of medical doctors or hospital staff. A medical practice for a pluralistic society needs to be ready for patients who arrive with complex and unfamiliar constructs for life, death, health, illness and healing, or accept outcomes like this by shifting the blame to patients rather than examining the medical practice itself and adjusting to create the desired outcomes. There's a lot of literature on that you can Google around for, too. But even a short list of the causes of Lee's complications is much less informative and enlightening than what's made available in the dense, deeply researched, and highly detailed piece of reportage that Anne Fadiman did.
posted by Miko at 8:44 PM on September 15, 2012 [2 favorites]


Here is a short excerpt from the book, just to give the uninitiated a taste of the style and a hint at the scope of what the book covers. (And here's the searchable text on Google Books.) I completely adored the book — so much so that I was emailing with friends all day today about the summer where we all read the book and just could not stop talking about it. Something that's incredibly difficult, as evidenced in this thread, is for most people with a Western understanding of medicine to even conceive of alternate theories that might form and affect one's understanding of how disease works. (Also, and I say this as the world's most Western-medicine human, but: It's not like we have perfect cures for epilepsy.) Part of what is fascinating about the book is the constant feeling from the reader of "but how come they didn't ___?!" and the answer being "because they didn't know ____." It's true for Lia's parents, it's true for her doctors, and hey guess what, it's true as a reader.

Lia was placed into foster care, as noted in the obituary and as detailed in the book. One thing that's stuck with me is that Lia's foster family — by all accounts an exemplary one — followed her medication instructions perfectly, but Lia's seizures increased under their care. They eventually started leaving their own daughter in the Lees' care while they took Lia to medical appointments, which is pretty incredible in the scheme of the foster system.

The book is about a confluence of lacks of information. And what's really incredible is that The Spirit Catches You doesn't draw that bullshit woo-woo conclusion at the end of "it's a little of both!!! Enjoy your enlightenment!!," which we often find in discussions of [whatever cultural practice] meets [another cultural practice]. It tells a much harder, and frankly much more human-driven and haunting, story about a bunch of people legitimately trying to do the best they can, all of whom are struggling to accept that there's a very sick little girl they all really want to, but can't quite, help.
posted by Charity Garfein at 9:02 PM on September 15, 2012 [8 favorites]


my mistake, I said something about the foster family being abusive - I was going on my memory and it sounds like it was faulty.
posted by Miko at 9:11 PM on September 15, 2012


From the Wikipedia page about Fadiman's book:
In Hmong culture, epilepsy is referred to as qaug dab peg (translated in English, "the spirit catches you and you fall down"), in which epileptic attacks are perceived as evidence of the epileptic's ability to enter and journey momentarily into the spirit realm. In Hmong society, this ability must be used to help others. Qaug dab peg is often considered an honorable condition and many Hmong shamans are epileptics, believed to have been chosen as the host to a healing spirit, which allows them to communicate and negotiate with the spirit realm in order to act as public healers to the physically and emotionally sick.
Ok. One more interesting Hmong health thing Sudden Unexplained Nocturnal Death Syndrome, which Shelley Adler covered very well in her book Night Terror. Hmong male immigrants were dying in the middle of the night with no explanation. Read the book to learn how American Medical Science clashed with Hmong spiritual explanation.
posted by bilabial


Taken together, these are making me think the Hmong could have succeeded in increasing the prevalence of epilepsy among themselves out of a perception that it can be a good thing.

Given the talents I've seen in the people I've known with seizure disorders, I'm not sure they're mistaken from the point of view of the community as a whole, but it can be hell on the individual who has to bear the burden of that awful disease-- which may be what we've seen play out in this case.
posted by jamjam at 9:32 PM on September 15, 2012 [2 favorites]


.


hoyland: "I actually really hated the book... Fadiman does try hard not to judge the family (though the person who wrote the review in the 'interactions' link maybe gives her less credit than I do), but I couldn't escape the feeling that we're meant to view them as some sort of strange species."

I agree; I strongly disliked that book. I've worked as a medical interpreter (Mandarin-English), and not only did the horrible cluelessness on display by the doctors irritate me and remind me of horrible crap I've seen medical practitioners engage in, Fadiman's narrative also seriously peeved me in a bunch of places. I feel like she may have tried not to judge the family, but she did so a lot anyway. She consistently infantilizes, exoticizes and looks down on the Hmong people in the book, while putting Western medicine and practitioners on a pedestal, or near enough. The Lees' point of view always seems to get qualified as subjective, while the Westerners' points of view are held up as objective. There's whopping great globs of orientalism thrown around.

It's downright offensive at times. There's one sentence that I had to write down, it was so horrible:

"...I was greeted by several large dogs that Dee and Tom, with the help of the five biological and six foster children, most of them retarded or emotionally disturbed, who were living with them at the time, were raising as canine guides for the blind." (p. 86)

Not only is that sentence really terribly constructed, it seems unable to distinguish between foster children and dogs. It makes me wish I could do Hmong-English interpreting instead of Mandarin-English, because then I could write a better book.
posted by jiawen at 10:43 PM on September 15, 2012 [3 favorites]


My eyes instantly filled up with tears.

.
posted by one teak forest at 11:57 PM on September 15, 2012


If the Hmong family were replaced by an american family who chose to pray to jesus and seek the help of a local faith healer instead of taking the prescription, would it be the same story?

Yes, I have no issue with judging each equally primitive. Actually I might be more harsh on the fundies, as they lack the excuse of a true language and culture barrier.
posted by Chekhovian at 6:32 PM on September 15 [+] [!]
I've done quite a lot of reading on medical sociology and medical anthropology, and these suggestions are offensive. That some people are making health care choices that are different from what you think you would do (or what you have actually done) is not 'primitive,' it is different. Fundamentalist Christians in America are sometimes homeschooled, and may be without information to navigate biomedical science. Some are very poor. Some have, for various reasons, avoided being out in public (to protect from the sinful nature of the secular world), and many blame illness as a spiritual failing, and a punishment from God. If a child isn't raised with information, the adult she becomes may not get the information either. Think of Rumsfeld and his unknown unknowns. As funny as people think that is, it's real. And a few people in this thread are displaying their own. (probably including me!)

Blaming an ill person/their family for either not having information or for being unable to parse and make use of that information, or for privileging other information over the data you prefer (or all three) does not solve any problems. Nothing gets fixed when you insist that the family should have known better or the family being ignorant is just unfortunate.

My most recent reading on this topic is focused on what biomedicine now calls Metabolic Disorder, a term most lay people I know haven't heard. Many doctors don't use it either. The most recent models of metabolic disorder suggest that stressful life events and physical activity may be more predictive than genetics or diet. And yet people who are diabetic are still pointed to dietary resources. For years, people from other cultures have used the term susto in connection with this disease process, and American medical doctors dismissed the concept. Susto describes the incredible fear and shock you feel when, for instance your home has been violently burglarized or you witness a terrible accident. Turns out there's something to that as well.
posted by bilabial at 4:47 AM on September 16, 2012 [10 favorites]


And from almost exactly a year ago, metafilter discusses Shelley Adler's book about nocebo.

Warmed my heart to go back to the first half of that thread and not see people blaming immigrants for refusing medical, and also to not see people calling belief in the night hah as cause of death a 'primitive' superstition.
posted by bilabial at 4:55 AM on September 16, 2012 [1 favorite]


(Minor linguistic point: the final consonants in "qaug dab peg" should be ignored, since they are tone markers; pronounce it more like "cow dah pay.")
posted by languagehat at 7:28 AM on September 16, 2012 [2 favorites]


Those who are eager to judge the family as "primitive" should read the book for the lengthy component of Hmong cultural context and the immediate pre-immigration status of that community in Vietnam. The situation, despite what are tempting superficial similarities to propose, is really not equivalent to a refusal of treatment by an American family of Christian Scientists, or similar.

Are the christian scientists "primitive" then? It seems to me that all sorts of belief systems are comprehensible if you truly try to understand the way they see the world, and yet at the same time cases like these are tragic because traditional world views derive only from a series of stories without a whole lot of utility. It is a great idea to work with other cultures so that ideas can be introduced without being alien, but that doesn't mean we have to be completely relativistic...

they been here long enough to even begin to assimilate, that would be a reasonable enough expectation.

If the right thing is to assimilate once you've had the chance, doesn't that imply that one is a better cultural approach? This doesn't seem consistent.

"Over the next four years Lia's anticonvulsant prescriptions changed 23 times." Two systems clashed, both equally culpable. Her family had no way to keep up with what doctors assumed they understood.

That's not specific to people who come from different cultures, though. Epilepsy is hard to medicate in certain cases, and doctors tend to just throw drugs at it. Some people are lucky, some are not. This sounds like it was pretty much just a sad story that may not have gone much better if the family had been assimilated to western culture.*

*as a person with epilepsy myself I have been recommended this book a couple times. I've started it but never finished it.
posted by mdn at 8:10 AM on September 16, 2012 [1 favorite]


Are the christian scientists "primitive" then?

It's not a question I'd engage. "Primitive" is a loaded word; it implies judgment against a standard; it's not scholarly.

It seems to me that all sorts of belief systems are comprehensible if you truly try to understand the way they see the world, and yet at the same time cases like these are tragic because traditional world views derive only from a series of stories without a whole lot of utility.

It's been demonstrated that these beliefs did have a whole lot of utility in their original context.

It is a great idea to work with other cultures so that ideas can be introduced without being alien, but that doesn't mean we have to be completely relativistic...

If the goal is "I want to effectively treat their illnesses toward an outcome that all parties perceive as the most positive one possible," then yes, you do have to be relativistic. If the goal is "I want to show them how wrong they are and how much smarter and better my worldview is," then no, you don't have to be. I tend to think the former is the much worthier goal.

If the right thing is to assimilate once you've had the chance, doesn't that imply that one is a better cultural approach? This doesn't seem consistent.

From the anthropological perspective, assimilation isn't right or wrong in itself, and we don't really need to solve that. It is something observable that happens, because humans are highly adaptable and born with few instinctual behaviors. There can be times when assimilation becomes quite negative because it takes a coercive form or results in cultural annihilation, and times when it is a net positive when elements of culture can be maintained and contribute to community and individual strengths while affording access to resources defended by dominant culture shibboleths.

I would expect more cultural assimilation in this family to have happened in this case, given time, and the quotes by her family in the recent pieces give me reason to think that to some extent it has has. One of the positives of assimilation is that it increases the shared cultural context that a patient and a doctor might have, making some of the commuication easier. Assimilation has a ton of negatives, as well. The posited Christian fundamentalist family, as described above, might also be said not to be fully assimilated into a dominant medical culture.

Epilepsy is hard to medicate in certain cases, and doctors tend to just throw drugs at it.... This sounds like it was pretty much just a sad story that may not have gone much better if the family had been assimilated to western culture

Yeah, a lot of the book is about this fact. This doctors in this medical system didn't have perfect answers for the kind of phenomenon they encountered in the first place, making the treatment methods of debatable value at all even for a Westerner; and yet because it's the only tool they could imagine, they kept trying to use it.
posted by Miko at 9:26 AM on September 16, 2012 [3 favorites]


grubby: "He had hidden his tumor from everyone but the Tsi Neng (shaman) for almost a year. He relied on shamans for that fatal year"

You don't need to reared within an animist culture to do something like this. Steve Jobs used woo woo for a year or so after diagnosis to attempt to treat his neuroendocrine cancer.
posted by meehawl at 1:54 PM on September 16, 2012 [2 favorites]


bilabial: "people from other cultures have used the term susto in connection with this disease process, and American medical doctors dismissed the concept. Susto describes the incredible fear and shock you feel when, for instance your home has been violently burglarized or you witness a terrible accident. "

If I am interviewing people from some cultures I ask them if they subscribe to a belief in "susto" or "nervios"? I understand it to have some overlap with the DSM definitions of PTSD and other anxiety syndromes. If you subscribe to a biological model, it may tell you that you dealing with a particularly dysregulated hypothalamic-pituitary axis, and it may also let you consider susceptibilities to psychodynamic models of personality development with vulnerabilities for catastrophisation, binary thinking, emotional dysregulation and other factors that contribute to "patient noncompliance" in a model of medical intervention. But not everyone exposed to trauma develops susto, just as not everyone develops PTSD*.

But I also check their body habitus, their daily exercise, their weight, and their Hb A1c, because those thing are incredibly strong predictors of "metabolic syndrome". I've had Hmong patients in SoCal before, and with many of them we discussed such issues as well as psychosocial factors as well (of course, we now have 2nd generation native English speakers in the families, as well as interpreters available). I think for east coast med schools like Yale, this stuff is harder to get to grips with because their patient populations tend to be so much less diverse.

*With especially disordered personalities, I will ask them if they believe they are experiencing "multiple personality disorder" (as opposed to simple dissociation or "spirit walking"), because a personal belief in their development of what I consider an exquisitely USian culture bound syndrome tells me a great deal about that person's psychological development and placement within a particular treatment modality.
posted by meehawl at 2:07 PM on September 16, 2012 [2 favorites]


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