Anne Fadiman grew up in one of
America's most literary households, the daughter of renowned critic
Clifton Fadiman and WWII correspondent Annalee Jacoby, co-author
of Thunder Out of China. "It was an amazing household to grow
up in if you wanted to become a writer," she says. After several
years of magazine journalism, she has come out with her first book-
length project, The Spirit Catches You and You Fall Down. The title is the literal translation of the words
for epilepsy in the language of the Hmong, an Asian culture with
deep roots in Chinese and Laotian territories. During the Vietnam
war, the CIA secretly hired Hmong soldiers to fight the Laotian
Communists. Once the country fell to the Pathet Lao, the Hmong
became the victims of genocidal policies. Those that were able to flee
made their way to Thailand and, in many cases, to the United States,
including the Californian city of Merced, which is where Fadiman
investigated the story of a Hmong infant diagnosed with epilepsy and
the conflicts between her family's culture and Western doctor's
expectations...
RH: This story was originally assigned as a New Yorker
article, right?
AF: Yes, it was assigned to me by Bob Gottlieb. I had left my
job as a staff writer at Life to write a three-part article for the
New Yorker, and fortunately for me, it had been paid for
before Gottlieb left. Tina Brown decided not to run it, and I decided
that I wanted to turn it into a book.
RH: It's an interesting thing to learn, because as I was reading the
book -- and I don't want this to sound overly flattering, like I'm
trying to butter you up -- but it very much reminds me in its
qualities, both in terms of the clarity of your language and the depth
to which you examine the story, of great New Yorker writers, in
particular John McPhee.
AF: Thank you! He is my hero, and I don't know if you're
being overly flattering, but even to be mentioned in the same breath
as John McPhee brings chills and makes my hair stand up. He can
make the most obscure subject seem like a microcosm for the whole
universe, and I've tried to follow that here. Although I've never met
him, I consider him my primary teacher after my parents.
RH: How did you first find out about this story?
AF: Absolutely by chance. I think the only way for the really
important things to enter our lives is by chance. The things that we
do by design are never quite as grand as the things that happen to us
through serendipity. And serendipity brought Lia Lee into my life in
1988 when an old college friend of mine, Bill Selvidge, who was chief
resident of family practice at the county hospital in Merced, told me
about some patients of his over the phone. He told me about the
Hmong, describing them as incredibly interesting but also incredibly
difficult. "We have such problems with them," he said. "They don't do
anything we say, and they seem to have taboos against everything:
anaesthesia, surgery, autopsies, spinal taps, blood tests..." Although
Bill loved his Hmong patients, he found them very challenging. And I
thought that if I could take one case and look at it from both points
of view -- the doctor's and the patient's -- I might have something
really interesting. Bob Gottlieb agreed, and that's how I ended up in
Merced.
RH: And the differences in those two views are so profound. In
order to explain the simplest elements of their culture, for example,
the Hmong's sense of the interconnectedness of all things leads to
elaborate explanations...
AF: One of my friends taught a French class at Merced College,
and he had assigned a five-minute oral report. A Hmong student
chose to talk about "fish soup." He started out by saying, "This is the
recipe for fish soup." But in order to have fish soup, you have to
catch the fish. In order to catch the fish, you need a fishing pole. You
need to have different gear for salt water and fresh water. After you
catch the fish, you have to clean it. There are different ways to clean
small fish and large fish... Forty-five minutes later, the student had
filled up the entire blackboard with notes, and described his entire
culture in order to describe how to make fish soup, because you
cannot talk about a single detail in the Hmong world without relating
it to every other detail.
RH: So when Western doctors say that Lia has epilepsy, the Lee
family sees it as the result of other events.
AF: Exactly. Lia happened to have her first seizure shortly
after her sister Yer slammed a door. Her parents thought that the
slamming door had scared her soul out of her body. Her doctors had
a different theory involving the misfiring of cerebral neurons. That
was the beginning of many years of tragic misunderstanding.
RH: One of the results of that misunderstanding is that the doctors
filed a child abuse report against the Lees.
AF: They knew that the Lees weren't child abusers according
to any standard American definition. They were loving parents, but
they declined to give Lia her antidepression pills because they were
under the impression that the pills were making their daughter sick,
not curing her sickness. That's not as crazy as it sounds, because her
medication did include a number of drugs with discernible side
effects. The drugs were making her sick; from the doctors'
point of view, it was a minor sickness outweighed by the major
sickness that was being cured. The Lees didn't see it that way.
The doctors were afraid that if Lia did not take her anticonvulsants,
she would have a seizure so severe that she would either die or
become severely brain damaged, and they felt that the only solution
was to take her away from her parents. I think there are other
solutions to the problem, but the doctors didn't see those solutions at
the time, so she went to an American foster family for a year. During
that time, her mother almost committed suicide.
RH: There's a deeper cultural sensitivity issue at stake which
applies not just to Hmong, but to members of other cultures whose
religious beliefs take precedence over medical 'necessity.'
AF: It's an issue I grapple with throughout this book. I was
present at a discussion between a doctor and a psychologist, which I
write about, in which the doctor said that a patient's spiritual life
was all well and good, but when a child's life is at stake, saving the
life comes first. If the child dies, he or she will never grow up, never
be able to choose whether or not they want to follow the parents'
religion. "But what," the psychologist asked, "if the parents believe if
a child has a certain form of surgery, its soul will be condemned to
eternal damnation? That might be a fate far worse than death." It's a
question of what's ultimately most important, the life or the soul.
RH: You cite a great Stephen Carter quote in regards to the legal
rulings on this issue, rulings which tend to uphold the doctor's view:
"It is perfectly O.K. to believe in the power of prayer, so long as one
does not believe in it so sincerely that one actually expects it to
work."
AF: Many Americans see prayer as pro forma and don't
expect it to really do anything, but when a Hmong sacrifices a pig
because he believes it will save a child's life, the Americans see that
as crazy. We have a great deal more respect, it seems, for religions in
which people don't believe than the ones in which people do
believe.
RH: Obviously, you had cultural barriers of your own to overcome
when you started to talk to the Hmong. Let's talk about how you
shifted from trying to find an interpreter to finding what you call a
'cultural broker.'
AF: I had been having a lot of trouble doing interviews with
Hmong. I'd been told that, because I was a young woman with low
status, I had to enter these houses with a high status, middle-aged
male interpreter. But they often didn't speak very good English;
because they hadn't been taught English in the United States, there
were linguistic problems in translation. The other problem was that
they were such highly regarded people that all the respect in the
room was given to them and no notice was paid to me. The
interpreter and the interview subject would have animated
conversations for five minutes or more, and I'd ask the interpreter,
"What did he say?" and he would reply, "Oh, he said 'no.'" I just had a
feeling that there was something that I wasn't being told.
I also ran into difficulties because of the different Hmong clans.
There were ten clans in Merced, and the members of a given clan
wouldn't speak to me unless the clan leader approved. And some
clans didn't get along with other clans, so I'd often bring an
interpreter from one clan to the home of a member of another clan
that hated the interpreter's clan...It was a mess and I was an idiot. I
thought I had learned to be a good reporter at Life, but I had
to start completely from scratch with the Hmong. It was completely
humbling. Nobody could have been more incompetent than I was,
until I met a twenty year old woman named May Ying Xiong. She'd
been educated in American schools, so her English was excellent, and
she didn't look down on me for being a young woman.
The reason I call her a 'cultural broker' is that she didn't just
interpret the words, she told me what they meant culturally. After
we'd conducted an interview, we'd go out to my car and sit for half
an hour in the dark, and she'd explain to me the cultural background
of what we'd been talking about. That enabled me to understand
what had gone wrong between the Lees and the doctors at the
hospital. She provided the subtext.
RH: You did that research in 1988. How much more research did
you do after that, and why has it taken until 1997 for the book to
appear?
AF: I have a theory that if you hear that a man has spent
eight years on a book, he really did spend eight years and it's an
800-page biography. But if you hear that a woman has spent eight
years on a book, she's probably written a 300-page book and had
two children, which is what I did. I did most of my reporting on the
Lee family in 1988 and 1989, but my research on Hmong culture
came much later. It took three years to do the writing in book form,
from 1993 to 1996.
RH: When you were dealing with the doctors involved, they ran a
wide spectrum from those who make attempts to learn as much as
possible about the Hmong to others who are...
AF: ...on the racist end of the spectrum, right. There's no other
way to put it. There's one doctor in there, an excellent doctor which
great clincial skills, who happens to dislike the Hmong intensely and
makes no bones about saying so. But the main doctors in the book,
Neil and Peggy, Lia's pediatricians, are just splendid people. They are
wonderful doctors, very compassionate, and if they couldn't make
this case work, very few people could. It's fortunate for this story
that they were not incompetent, insensitive villians -- the book
would have been too easily polarized if that were the case: "Let's
over-romanticize the Hmong and slam the American medical
profession."
It was surprising and rare for two doctors to spend hundreds of
hours explaining a case in which everything had gone wrong. Most
doctors would prefer to forget such a case, and would certainly not
want to have a book written about it. So I think they had an awful
lot of courage. They never put anything off the record, and they let
me see every single piece of paperwork on the case.
In the early days of dealing with Lia, though, they were so busy and
harried, that they were concentrating more on medicine that on
cross-cultural communication, and one can hardly blame them for
that.
RH: I also came away from the book with a lot of respect for the
Lee's social worker, Jeanine Hilt.
AF: She was actually the person who was bureaucratically in
charge of having removed Lia from her home, so the Lees had every
reason to hate her, but in fact they loved her because she loved
them. She was the first American who really loved the Lee family,
and she eventually got Lia back into her own home.
Jeanine was a short, plump, Hmong-sized woman who would sit with
them on the floor. Her heart was in a Hmong place...I don't know any
other way to say that. And when she died a few years ago of a
severe asthma attack, Lia's mother said that she felt she had lost her
American daughter.
RH: In writing this book, you say that you feel you've become a
better mother and a better patient.
AF: In the years I spent working on this book, my husband,
my father, my brother, and I have all had serious medical problems.
I've spent a lot of time sitting around in hospitals dealing with good
doctors and bad doctors. My experiences working on this book made
me, I think, appropriately cautious about taking what doctors said as
gospel truth, but it also showed me how hard it is to be a doctor. It
gave me more sympathy for the doctor and more skepticism.
I learned how to be a good mother from watching Hmong with their
children. They are the warmest parents in the world. I saw those
loving, happy, tumbling extended families and said to myself, "This is
a better way to be." I'm sure that it's influenced the kind of mother
that I've tried to become.
