This guest post is written by Elizabeth Krause
“Hais cuaj txub kaum txub- ‘to speak of all kinds of things.’ The Hmong use it at the beginning of an oral narrative as a way of reminding the listeners that the world is full of things that may not seem to be connected but actually are; that no event occurs in isolation; that you can miss a lot by sticking to the point; and that the storyteller is likely to be rather long-winded.” Passage from The Spirit Catches You and You Fall Down
My friend and health literacy colleague Kate Singleton broke the news a few weeks ago via Facebook that Lia Lee passed away on August 31st.
The book chronicles the clash between Hmong health beliefs about severe epilepsy and the US health care system.
Ten years ago, I took a bus from Boston to Middlebury to attend a friend’s graduation. The hours on the bus with nothing to do but take in vast expanses of New Hampshire and Vermont became the backdrop for my nose in book.
To quote Alice Hoffman, “Once you know some things, you cannot un-know them. It is a burden that can never be given away.” I cannot remember many of the details of the book, but I can remember the impact it had on me. It helped me “get it.” In this sense, I have carried Lia’s suffering with me every day. A copy of the book has graced prominent positions on the shelves of my offices in Atlanta, Denver, and Hartford. I think of it as an unspoken nod of solidarity to the many who have come to talk to me about racial and ethnic health disparities.
As my work has increasingly become focused on systems and the field’s toolkit of health disparities solutions has expanded, I have been guilty of thinking and even speaking something along the lines of “cultural competence is sooo 2004,” though with a more diplomatic choice of words. Reconnecting with Lia Lee’s story: a) forced me to hold a mirror to my hubris (which was promptly scourged) and b) reminded me that in the face of complex health care transformations that most patients do not understand, we must be more vigilant than ever about ensuring that the cultural, linguistic, and health literacy needs of vulnerable patients are not lost. This work is far from behind us; we must implement it in ways adapt with the times.
While many continue to conceive of Lia Lee as the young child in the book, I was surprised to learn that she was close in age to me. Her life was marked by ongoing medical hardship and it gives me comfort when I think about how she unwittingly catalyzed the movement for cultural competence training for health care providers and by extension helped unquantifiable numbers of immigrant and refugee patients and their families. Lia Lee’s legacy will live on.
How has The Spirit Catches You and You Fall Down and Lia Lee’s story influenced you?
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