Medical terminologies can be so defining. Assumptions are made, opinions formed and those who have these conditions, through no choice of their own, can be burdened by the stereotyping often associated with its name.
Such is the case in Vietnam where cerebral palsy (CP) is called ‘bại não ’. Bại translates as failure and não means brain. This term causes many misconceptions amongst parents, people with CP and the public in Vietnam. Anyone diagnosed with ‘bại não’ is immediately categorized as ‘paralysed’, ‘damaged’ or ‘broken’, regardless of the nature of their condition.
But one Vietnamese woman is on a mission to change this and, in doing so, redress the stereotyping and public perception around this misunderstood condition in her country. Sometimes it just takes one person to see the injustice of an inherited legacy, and that person is Dr Yen-Thanh Mac.
Yen-Thanh Mac: No ordinary life
While a medical student, Yen-Thanh attended health camps where she cared for and interacted with children who had cerebral palsy. Even at this early stage, she didn’t feel comfortable using the term ‘bại não’ to describe them but she wasn’t sure why. However, in her final year of medical school, her professor explained that the declining cognition of children with cerebral palsy is due to their lack of therapy, education and support. Parents believed it wasn’t possible to improve the condition of their child as they had a ‘paralysed brain’, so they would just keep their child isolated and unsupported, which in effect worsened their condition.
However, it wasn’t until Yen-Thanh became involved with the Australian-based not-for-profit organisation CLAN (Caring & Living As Neighbours) that she realised she could make a difference.
CLAN is dedicated to the dream that all children living with chronic health conditions in resource-poor countries of the world will enjoy a quality of life on a par with children in neighbouring, wealthier countries. By becoming involved in CLAN’s work, Yen-Thanh realised that she could use her skills to campaign on these issues, to improve the lives of children with chronic health conditions, as she and her sister also suffered similarly.
It was while working with CLAN that Yen-Thanh met Laverne Bissky from the No Ordinary Journey Foundation (NOJF). The No Ordinary Journey Foundation is a non-profit organisation that has made incredible progress raising awareness and support for disabled children in developing countries. Their work was a positive, eye-opening experience for Yen-Thanh.
“I met Laverne’s daughter, Kasenya, who has cerebral palsy and was amazed at what she was able to do despite her disability,” she recalls. “She goes to school, can travel everywhere and is involved in educating the public about children with CP.
“It made me realise that the natural cause of cerebral palsy is the same everywhere; the children have the same disability. Where it differs is in the attitudes of society. The public attitude determines how the disability is accepted and treated.
“To improve the quality of life for people with cerebral palsy in Vietnam, the first thing we need to do is to change the attitude towards it. And the simple and most obvious place to start is with its name.”
A simple goal – a significant difference
Part of the logic that frames Yen-Thanh’s focus is the knowledge that, in English-speaking countries, a diagnosis of cerebral palsy can create space for conversation. People are more likely to ask their doctor what this term means, which then facilitates further discussion about the condition and support available, and creates a deeper level of understanding and acceptance.
In countries such as India and Nepal, doctors actually study in English and use English medical names rather than their local language to ensure that no meaning is lost in the translation.
“In Vietnam, too many children with CP are ignored and offered neither support nor acceptance, particularly in rural areas, simply because they are labelled with such a negative and misinformed name,” Yen-Thanh explains.
“I want parents to have the opportunity to talk with their doctors about CP, and to be able to ask questions and truly understand what having CP means for their child. This seldom happens – when a parent hears the words ‘bại não’ they assume they know what it means.
“My vision is to remove the name ‘bại não’”, she says determinedly. “And to remove the negative perception towards CP in Vietnam.”
A global platform
While determined, Yen-Thanh is still pragmatic. ‘Cerebral palsy’ is quite difficult for Vietnamese people to pronounce so I’m suggesting we keep the abbreviation ‘CP’ and formalize that as the name rather than use ‘cerebral palsy’”, she explains.
An international Cerebral Palsy Conference served as the platform where Yen-Thanh formally proposed the name change for CP in Vietnam. Facilitated by the No Ordinary Journey Foundation and held in Vietnam in September 2015, this conference focused on challenging pre-existing boundaries around cerebral palsy. Approval and funding was sought to conduct a survey amongst the Vietnamese communities in the lead-up to this event, to gather more research, drive support and better understand existing constraints.
Meanwhile, an abstract on the subject is currently being co-written by Yen-Thanh and an Australian colleague for the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) conference in 2016.
Yen-Thanh is encouraged by the positive results from similar campaigns in Japan and Korea where the terminology for schizophrenia – literally translated as ‘mind-split disease’ – was changed in 2002 to translate as ‘integration disorder’. The change had a positive impact, as evidenced by a survey carried out only months after the official approval of the use of the new term. The survey showed that 78 per cent of psychiatric practices had started using the new name. This gives Yen-Thanh encouragement, knowing that the same positive impact can be experienced in Vietnam.
Time for change
It was a young nineteen-year-old called Kasenya Bissky who provided the motivation for Yen-Thanh’s quest. Kasenya leads a full and active life with CP, which, as Yen-Thanh says, “inspired me”.
Travelling with the NOJF as medical advisor and visiting orphanages around Vietnam further cemented Yen-Thanh’s motivation for positive change. “The NOJF was the first organisation to support my idea, to change away from ‘bại não’ to cerebral palsy.” Yen-Thanh explains. “I shared this idea widely as we travelled and received a lot of positive feedback and support.”
Intuitively, Yen-Thanh’s name-change proposal is straightforward and sensible in its simplicity. And with prominent platforms from which to present it, she’s hoping the local interest already generated will become the spark for a global groundswell.
When something as simple as a name can negatively affect a community’s attitude towards others, then a name change to prevent this should be considered a welcome and overdue necessity. Dr Yen-Thanh Mac is convinced that the CP community in Vietnam and around the world will agree.