1Running head: THE SPIRIT CATCHES YOUTHE SPIRIT CATCHES YOU6

The Spirit Catches You and You Fall Down:A Reflection on the TextJulia HartGeorge Washington University

The Spirit Catches You and You Fall Down: A Reflection on the Text

As someone who has been working with children for many years, I found The Spirit Catches You and You Fall Down to be simultaneously heartbreaking and horrifying. The ways in which the medical and social services agencies failed the Lee family were shocking, and yet somewhat familiar. I found several personal connections to the story of Lia Lee and her family as I read the book, and yet also connected with the voices of the doctors and social workers that strived to help Lia. The culture clash between Western medicine and this Hmong family resulted in a continual struggle to do the right thing for the child. Unfortunately, I have seen how Western medicine reacts to immigrants and those not well-versed in medical knowledge. A dear family friend from Thailand, Lex, spent many days in a local hospital in terrible pain before doctors were able to diagnose a gallstone attack. Lex has been in the US for many years, and is here legally, but has limited English vocabulary and a strong accent that makes her English challenging to understand. Had this friend been able to converse more fluently in English or had a doctor willing to take the time to listen to her and understand the problem, she would have been spared days of pain and thousands of dollars in hospital bills. At the time, it had not occurred to this woman to seek help from friends who could help advocate for her. Since her hospitalization a few years ago, Lex has asked my mother to help her as a healthcare advocate. My mother goes to each and every doctors appointment with Lai to ensure that she understands what the doctor is saying and that the doctors will listen more closely to Lexs needs. Because of my familys experience with Lex, I found myself wishing that the Lee family had someone to advocate for them and to help them understand the American medical system. Another, more recent, personal experience helped me connect with this book in other ways. This past school year I had a child in my class who has epilepsy, Ill call him Max. The past nine-months have been an incredible learning experience for me and my colleagues in the management of epilepsy and the behavioral effects of the medications used to control seizures. This experience made me sympathetic to the doctors and social workers that strived to help Lia Lee. My work with Max and his family was both frustrating and rewarding. I made many mistakes in my interactions with his family, but I was fortunate that at least there was no language or cultural barrier getting in the way of our having a successful relationship. Ultimately, my co-teacher and I were able to form a successful partnership with Maxs family and we helped them to understand that we all wanted the best for their little boy. After my experience with Max and his family, I did find myself condemning the parents of Lia Lee for their non-compliance with the medications Lias doctors had prescribed. It was challenging to be able to set aside my experiences with a family that had tried so many types of medications and dosages to control their childs seizures, and to understand how any parents could allow their childs condition to go untreated. And yet, even while I felt great anger at the situation, the love that Foua and Nao Kao Lee felt for their daughter was evident. It was obvious that they were doing what they thought was right for their child. The acceptance of children with special needs in the Hmong culture is something that one might wish for any child. It was the love of their child that may have kept Lia Lee alive even when her doctors were unable to treat her in the ways they thought appropriate.The Lees experience with the medical and social services in Merced, California was a catastrophe. The systems that sought to protect the welfare of the child were unable to form a successful partnership with the family and the family was unable to understand the Western ways of their new home. Perhaps had there been a better system of interpreters available at the hospital or had the doctors found a simpler regimen of medications for Lia to take, the situation would not have escalated to such a disastrous state. Perhaps if Anne Fadiman had come into their lives sooner, she could have helped to form a bridge between the cultures.As Fadiman (1997) says in chapter 17, it is easy to wonder how Lias story might have played out given just one change in the circumstance. There are so many what-ifs? in the case of Lia Lee. The intersection of Hmong culture and American medical culture produced unfavorable results in the case of Lia Lee. How could this go differently in the future, is a question posed by Fadiman, and very much an overall theme of the book. A quote from Arthur Kleinman in response to this question rings true, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you cant see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone elses culture? (Fadiman, 1997, p.261). This statement gets at the heart of the role of practitioners- balancing legal and procedural policies with family needs and desires. In order to do the best job for children, it is essential that we are able to see how our own perspectives influence our work. If we are not able to see how our own culture influences our actions, we will not be able to work within the cultures of others. The book Families, Professionals, and Exceptionality (2011) also addresses the issue of cultural understanding. The authors suggest that it is important for professionals working with families to act as cultural interpreters. They explain, By serving as interpreter or translator of Western practices, professionals can convey American practices and at the same time learn about families practices and cultural beliefs (Turbull, Turnbull, Erwin, Soodak & Shogren, 2011, p.167). This is a message I will take away from the story of Lia Lee. While I feel that my school works hard to embrace the differing cultures of all our students and their families, it is also something that can always be improved upon. One practice that puts value on family culture are the home-visits we conduct each year before school begins. These serve for the teachers to gain a greater understanding of the childrens home lives, and for families to see that we value the important work they do at home. Sometimes parents have different goals for their children than the goals of professionals such as educators or doctors. It can be a hard lesson to learn that as professionals, it is our job to try to marry our goals. This is a lesson of acceptance that I imagine must take years to learn, since I certainly do not feel as though I have achieved this level of acceptance. Every year I must remind myself that working with families and maintaining positive relationships is a far greater success than having complete control over the educational experiences of the children in my class. No matter how much time children spend in my care, their parents are their most important caretakers, and as such, they should be equal partners in their childs education. I am sure that when I experience frustration with a familys beliefs or desires in the future, I will remind myself of this book and strive to seek a compromise that will still benefit the child.

ReferencesFadiman, A. (1997) The spirit catches you and you fall down. New York, NY: Farrar, Straus and Giroux.Turnbull, A., Turnbull, R., Erwin, E. J., Soodak, L. C., & Shogren, K. A. (2011). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. Upper Saddle River, NJ: Pearson Education, Inc.