Let the spirit catch you

Lia Lee and her mother Foua

Throughout history, people with disabilities have been at the mercy of the culture they were born into. Some cultures shun people who are different mentally or physically. Others embrace them and attach special meaning to their circumstance.

This latter tendency to revere and honor people with disabilities is one of the themes of a book I’ve recently read. It’s called The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures.

By Anne Fadiman, it tells the story of a family of Laotian refugees who flee to the United States after their country falls to the communists in 1975.  After their arrival in Merced, CA, the Lees – who already have eight children – have a baby daughter Lia.

Clash of two cultures

It soon becomes clear that Lia has a severe form of epilepsy, which causes serious and frequent seizures.  In Hmong, the condition is known as qaug dab peg (pronounced “kow da pay”). The Hmong believe that qaug dab peg and other illnesses are spiritual in origin and are the result of the soul becoming separated from the body.

(The English translation of the Hmong term is “The Spirit Catches You and You Fall Down.”)

Because of their animist belief system, the Lees have serious clashes with the American doctors who treat their daughter when she has seizures.  Much of the book is about the gap between the two approaches to treating epilepsy.

But it’s also about how the Hmong view people with physical and mental deformities. Eventually, Lia has a catastrophic seizure when she is 4 years old and she suffers so much brain damage that she enters a vegetative state.

Most humans who suffer this level of brain trauma do not live for more than a few months. Because Lia’s family refused to leave her in the hospital and instead took her home and showered her with nonstop care and affection, she lived for 26 years. She died in August 2012 at the age of 30.

Children with disabilities showered with affection

Lia’s remarkable story is not unusual, given the Hmong culture.The anthropologist George M. Scott Jr., quoted in Fadiman’s book, says that in Laos:

“Children were generally deeply adored… Even those with physical or mental deformities were showered with affection, indeed with even greater affection than normal children, which resulted in part from the belief that… the deformity was the consequence of past transgressions on the part of the parents and thus must be born with equanimity and treated with kindness as means of expiation.”

In the Lee’s case, they were pretty sure her condition wasn’t the result of something they had done. Rather, it was the result of what the doctors had done.

Whatever the reason for Lia’s vegetative state, the family could not imagine treating her any other way than to make her the center of their household and to be attentive to her every moment.

For western cultures, the Lee’s response is nothing short of amazing. Most people in our culture who have a family member with such severe brain damage would place them in a nursing home.

Every person has value

As Anne Fadiman says, before she met Lia, “I would have considered Lia – someone who cannot speak, laugh, think, work, or in my lexicon, ‘contribute’—deserving of kindness but of little value, a partial person if a person at all.

“She taught me otherwise. How can I say she is not valuable when she means so much to the people around her?

“How can I say she has nothing to contribute when she altered the course of my family life, my life as a writer, and my whole way of thinking – and may also have influenced some of the people who have read about her?”

Indeed, Fadiman’s book – which has sold almost a million copies — – has become required reading in many medical schools and in university programs in social work, journalism and other disciplines.

There can be no doubt. Lia Lee’s life had great value. So did the life of my Uncle Melrose, who had a profound intellectual disability.

We’ve all got something to learn from each other, no matter who we are. We just have to slow down long enough to listen.