How important is understanding, accepting, and not
judging the beliefs and practices of a culture different than that of your own?
Think about American culture and the season that will soon approach: The
Holidays! Christmas verses Chanakuh verses Kwanza which are some of the more
well known religious observances in the United States. As Speech and Language
Pathologists (SLPs) we must be cognizant not only of mainstream culture and
those well known minority cultural practices but those that aren’t so well
known. For example, the Hmong people who migrated from Sainyabuli Province,
Laos beginning in the 1970s as refugees from parts of China. Most of these refugees
stayed in Thailand camps before coming to the United States of America.
According to Wikipedia, to date California houses the majority of these
refugees, over 260,000. However, refugees also traveled within the U.S. to Minnesota,
Wisconsin, Washington, Pennsylvania, and North Carolina. Some refugees migrated
to France, Canada, Australia, and Argentina.
SLPs interact with people at times in some most vulnerable
places (i.e., hospitals, homes) and with their most cherished possessions:
their families. In dealing with teaching communication, improving one’s overall
well being, eating and drinking, and/or improving their communicative abilities
we must be cognizant of each individual’s values. In my opinion the mainstream
American self perception is that we are better than everyone else; we are the majority;
we are the leaders; we rule; we are the best. However, once you open your eyes,
reality sets in...not everyone has this same opinion. This difference of
opinions is manifested in one of many stories: The Spirit Catches You and You Fall Down. This book was
written about a Hmong family, and their daughter, Lia Lee, whom was diagnosed with
severe epilepsy and died. The overall theme of the story is about how two
completely different cultures (American and Hmong) clash at every opportunity
over how to handle and treat a baby, toddler, child, young girl whom regularly
has seizures of severe epileptic attacks.
Wikipedia, quotes Marilyn Mochel, a nurse, when the
book was published in 1999 (only 13 years ago) in stating that this book has
“allowed for more dialogue”. The events are based on true accounts from
doctors, nurses, other medical personal, and the Lee family. Although this book
was set just one year shy of a new millennium and in an area close to a community
full of Hmong people, the lack of knowledge of the culture’s beliefs,
practices, and values highlights the disparity that is still disputed today...regarding what lead to
Lia’s death: the overuse/over prescription of medication or her parent’s
resistance to Western medical treatment.
After the book was published various
websites claim that this book opened the eyes of medical professionals and
began communication among these diverse cultures regarding their cultural
differences, views, and practices. Seeing when this book was published dictates
that we Americans are far from an era free of judgement, casting fault, and
claiming superiority over minority groups. For SLPs this should be a clear
indicator that to this date we cannot make assumptions about an individual’s
beliefs and practices. We need to ask questions, know, and understand who are
clients are.
The Spirit Catches You and You Fall Down is book which
discusses the Hmong culture, how the family was viewed by medical staff,
several monumental events, relevant personnel which disregarded the family’s
culture, and the efforts needed by the author to interview the Lee family for
their side of the story. The question here is, why this book is discussed or
noted as relevant within the SLP community? The Hmong culture has many views
different than that of mainstream America and even that, as it relates to me, of many Spanish
speaking countries. An SLP strives to improve the quality of life of their client. In order to do so we should know and understand our client's life and necesities as a whole. Unfortunately, in Lia's case, many professionals who were suppose to help her judged her parents
and made claims such as wanting to put a bullet into the heads of the Hmong
people because they were so difficult to deal with; all because of a lack of
understanding, a difference of cultural norms.
Knowing how important culture, language, and values
are in our field, I anticipate working mostly with Spanish speaking communities,
people from inner cities who speak English, and various dialects and cultures
within those languages. Even then I must be careful not to make assumptions.
For example, during Lia’s stay at a community hospital, there was only one
person, a social worker, who ever asked the family what they thought was going
on with her. Throughout the book, no one really respected the family, their
culture, and values. Even though Lia’s condition did not improve and in many occurrences
worsened, minimal examples by those in the medical field actually attempted to
reach out to the family. One doctor who attempted to respect the ritual
practices of the Hmong people in the hospital was disliked among his peers.
Conversely, the doctor who cared for Lia every time she was brought to the
emergency room believed that she REQUIRED OPTIMAL CARE! He questioned his
uncompromising tactics in dealing with her parents and eventually in order to
comply with the law he was REQUIRED to report her parent’s lack of complying
with the medical regimen as child abuse and neglect. This brings two important
ideas to mind in our SLP field: will we be out casted for doing things
different yet best for our individual clients and we are mandated reporters. In
New York City many agencies enforce using “scores” on evaluation reports for
many inner city youth yet the protocols used to test them is not reliable or valid
for children of commensurate abilities/experiences.
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Lia Lee, the second youngest of fifteen children, was
seven years old when she reached a vegetative state due to the disparity
between her family’s Hmong culture and doctor’s medical treatment. Lia had her
first epileptic attack at three months of age. The Hmong people believe that a
seizure is when a soul enters a body to heal an afflicted person; this is seen
as divine within the culture. The Lee family considered Lia’s condition a
blessing. From her first year of life, Lia had over 20 seizures, three of which
her parents took her to the community hospital. After arriving to the emergency
room during a severe epileptic attack a doctor diagnosed Lia; the parents were
unaware of the diagnosis and the doctors were unaware of the family’s beliefs.
From then on, the doctors were on a mission to find the cause of the seizures,
and a cure.
One of the possible “cures” considered taboo in the
Hmong culture, is surgery. In addition Hmong people believed there was a finite
amount of blood in the body and giving an unconscious person anesthesia could
lead to death, in fact most medical practices used in Western culture posed a threat
to their health. Noted in the book, Lia’s parents were illiterate and hesitant
about giving her medication. The prescriptions called for daily and consistent
regimen of at least three different types of medication. The two cultures were
at such odds with each other, one believing medication was absolutely necessary
to control Lia’s seizures and the other believing the medication was
obstructing the healing process; the family was reported to child services
fearing for Lia’s life and the state of California stepped in and removed her
from her house into foster care.
Some cultural practices noted in the book included:
sacrificing animals, burying placentas of their offspring at the door of their
home or under their bed; unlike the mainstream American culture people did not
track dates such as when they were born or name children until three days after
they were born. Instead important events were remembered based on natural
events (i.e., moon, farming, storms). Based on historical events and migration
long before arriving to the United States, the Hmong people are characterized
as not liking to take orders, not liking to lose, rather flee or fight than surrender,
are not easily intimidated by being outnumbered, and are not easily persuaded
by dominant cultures.
Lia, who suffered hundreds of seizures, was
developmentally delayed, language began to retrogress, and was hyperactive as a
possible side effect to medication. The Mayo Clinic states that a grand mal
seizure usually occurs once in a person; Lia suffered many. Additionally the
Lee family blamed an older sibling for causing Lia’s seizures because her first
seizure occurred immediately after she slammed the door of a room Lia was in.
This sister was treated differently than all of her other siblings. With all of
the differences between the cultures, how does someone outside of the community
write a book about an event with such great detail? A psychologist, who
described herself as a “healer of hearts” on her business cards was warmly accepted
within the Hmong community. One rule the author noted about this psychologist
was that before she did anything in the home she visited she always asked if it
was OK.
Even in this day in age and dealing with a somewhat
more accepted minority culture: the Spanish community, I foresee myself dealing
with adversity. In my experiences as a student, I have not seen a great
emphasis on a client’s historical and medical backgrounds or a young client’s
developmental milestones. Additionally there is little known about the client’s
family practices, such as how communication takes place within the home. I plan
on dealing with these challenges by sending questionnaires home, after
verifying the care takers can read and write, and confirming responses before
the first evaluation. In my opinion the more I know about the family/caretakers
and the client’s opinions, views, and goals the better I can serve them. As the
psychologist in the book notes, I will make a habit of asking questions and
making sure everything is OK and not assume that my belief/practice is
generally accepted.
