Words can hurt: A mission to change terminology

Words can hurt: A mission to change terminology

Dr Yen Thanh Mac with Ms. Thuy Chi, a young journalist/writer who is living with cerebral palsy in Ha Noi, Vietnam. She has graduated from the Journalist and Communication Academy but is having difficulty finding an official job as the name of disease. 

Vietnamese doctor Yen Thanh Mac has been a friend of CLAN for the past 7years. CLAN’s team first met Yen Thanh when she was working as a paediatric doctor in the departments of Nephrology and Endocrinology at Children’s Hospital 1 (CH1), one of the children’s hospitals in Ho Chi Minh City that CLAN has been partnering with in Vietnam. 

Throughout the years, Yen Thanh has served as an education and research officer with CLAN and was later promoted to CLAN’s Vietnam Program Manager, and led efforts for the Duchene Muscular Dystrophy and Osteogenesis Imperfecta communities in 2013-14. She currently considers herself a CLAN volunteer and is thankful for the relationship she has been able to maintain with CLAN throughout the years. Yen Thanh has expressed her gratitude towards CLAN stating, “By using their strategic framework, CLAN has helped further my understanding of how children living with chronic health conditions can achieve the highest quality of life.

CLAN helped contribute to the shift in my area of desire from clinical medical practice to advocacy and public health.” In particular, Yen Thanh has become increasingly passionate about learning from and working with communities having disabilities in her country.

One particular community that has become very close to Yen Thanh’s heart is the Cerebral Palsy community of Vietnam. Cerebral Palsy (CP) is a general term used to describe a group of permanent life-long conditions associated with the development of movement and posture. Motor dysfunctions associated with CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, frequently appearing as a result of epileptic and secondary musculoskeletal episodes.

One challenge facing the CP community in Vietnam is the language used to describe their condition. In the Vietnamese language Cerebral Palsy is directly translated to “bại não”, with “bại” meaning failure and “não” meaning brain. Together, the term “bại não” has the interpretations of “no cognition”, “useless brain” and “brain failure.” With many people living with CP having typical cognition, use of the term “bại não” results in painful misconceptions that contribute to children with CP living in Vietnam receiving inadequate support and opportunities to achieve their full potential. Families receiving the diagnosis from medical professionals often lack the educational and emotional resources that are commonly provided to children and families receiving the same diagnosis in wealthier countries. Most families become overwhelmed with their child’s diagnosis that they neglect to ask essential questions to help them further understand. Due to pressures on the healthcare system in Vietnam doctors often simply do not have enough time to explain to parents the complexities of their child’s medical diagnosis.

Yen Thanh further states the time of diagnosis is critical. It is the time that parents decide on the pathways of treatment and management their child will need. Yen Thanh believes replacing the term “bại não” with the English term “Cerebral Palsy” or “CP” would cause the Vietnamese to ask the question “What is that?” She hopes the English translation would spark discussion amongst medical professionals, parents, and patients.

Limited explanations along with hesitations to ask questions often leads parents to confuse developmental delay with motor related aspects of CP. The misinterpretations do not have to do with the Doctor’s ability to provide a correct diagnosis, but rather the fact that there are no developmental paediatricians in Vietnam. Most children with CP are diagnosed by doctors specialising in other fields of medicine, and as a result there can be less awareness of the need to assure parents that their child with “bại não” may have typical cognition. 

Dr Yen Thanh frequently hosts workshops for individuals with CP and their families. At her workshops, she asks the parents to write down the name of their child’s condition. Results have shown that most parents respond with a condition that is not CP. More than often parents state that their child has Down Syndrome or Polio- a condition associated with muscle weakness resulting from damage in the peripheral nervous system. Yen Thanh expresses her concerns stating, “With families unsure of their child’s condition, how can they seek the correct treatment?” Incorrect terminology affects the quality of life of an individual living with CP, ultimately affecting their social participation and their daily activities. 

Yen Thanh has never truly felt comfortable using the words “bại não” when referring to an individual living with CP. It wasn’t until traveling to the United States that she was able to learn more about the treatment and management of chronic health conditions in the US and fully understand that the Vietnamese term needed to be changed. Yen Thanh states “We don’t have the right to use hurtful words towards other people. [People living with CP] have the right to be called what they think is best for them.”

Yen Thanh is optimistic that the transition from “bại não” to the “Cerebral Palsy” or “CP” is possible, stating the Vietnamese have adopted many other English terms into their everyday life. The Vietnamese use words like “laptop, pizza, and supermarket,” words that come from the English language and don’t have a direct Vietnamese translation. One of the main barriers to changing the name however is the lack of knowledge with regards to CP in Vietnam. Many Vietnamese do not understand the need for the transition because CP is not as prominent in the daily lives of Vietnamese as a laptop and the supermarket are. 

Yen Thanh’s professional visit to Australia was geared towards learning about the updates of the treatments and management of individuals living with CP. Yen Thanh states, “advocating must come along with education.” There are currently few parental education programs for CP in Vietnam and a limited number of medical experts on the condition.

While in Australia Yen Thanh has met with Professor Dinah Reddihough, a Developmental paediatrician involved in the clinical care of children with disabilities with a focus on cerebral palsy. Yen Thanh is thrilled Dr Reddihough has agreed to support her mission to replace the Vietnamese terminology of cerebral palsy with “CP”. Yen Thanh also had the pleasure of attending a Teaching Movements for Communication workshop hosted by the Cerebral Palsy Education Centre in Melbourne. The workshop was geared towards teaching participants how to observe and identify the movement challenges children with CP encounter as well as accommodations for postural control.

Yen Thanh states her trip was a great success and is hoping to take all she has learned while in Australia back with her to Vietnam where she can work further with the CP Community of Vietnam to continue raising awareness and support. 

Yen Thanh went on to further express, “During this trip, I have been thinking of CLAN a lot. CLAN was the first NGO I worked with. They taught me about network building and the importance of expanding connections and they have helped me make many kind Australian friends. Most of the people I’ve met have come from CLAN's connections, direct or indirect. CLAN has given me a good background on community support network development, advocacy and medical education. From CLAN, I have learned that conducting research and using evidence from studies to advocate is the best way for sustainable advocating. I would like to give CLAN the sincerest thanks.”

As she works on this project, Yen Thanh ultimately hopes to open a social enterprise committed to children with CP in Vietnam.  Yen Thanh is confident that her dedication and hard work will take her far. As a friend of Yen Thanh, CLAN will continue to support her goals and aspirations. We can’t wait to see how Yen Thanh will use all she has learned in Australia back in Vietnam.

An interview by CLAN intern Stephanie Carde