LYFE Languages: Prioritizing the Health of Indigenous Populations

A few days ago, on one of the rare occasions that I turned on the TV, I happened on a documentary about the Aboriginals of Australia. How the activities of the European settlers decimated their numbers, desecrated their sacred sites and denigrated their humanity. One of the subjects in the documentary (who is now deceased) was an elderly man called ‘Spider’ who lamented the fact that he had not seen his original homeland since he was forcefully relocated since his youth. He bemoaned the lives lost, whole clans and tribes wiped out, along with their culture and languages. The plot of the documentary was to find a way to take him back to the place of his birth one last time, and when it was achieved, he wept tears of sadness for the past as well as joy for the future with the hope that the grandchildren who accompanied him, will have a sense of belonging to their original homeland. As an African who resides on the continent, I am no stranger to the effects of European colonialism (past and present) and I was able to connect with Mr Spider as well as empathize with his loss.

Like everyone else, Indigenous people must be protected and respected. Their culture, languages and history must be preserved for therein lies the identity of the people. The UN designated that August 9th should be celebrated as World Indigenous People’s Day so as to ensure we never forget the horrors done to them, which must never be repeated.

Recognizing that most communities in Africa are largely indigenous by nature, on August 10th, 2020, Rare Disease Ghana Initiative launched LYFE Languages project in partnership with Project Y Initiative. Globally there are estimated to be 350 Million people living with rare diseases, which is similar to the number of people that speak Indigenous Languages (370 Million). There are 6-8000 rare diseases which is similar to the number of Indigenous Languages (7 Thousand). People with rare diseases frequently suffer disparities and  inequitable access to diagnosis and treatment. The inequities in broader Indigenous populations are also undeniable, and they are at risk of failing to benefit from advances in biomedical innovation. As we strive to achieve Universal Health Coverage,  languages are the critical component to transforming health and well-being for hundreds of millions of people. This is imperative, as we realize that languages are so central to members of tribes, communities and nations, hence medical terms for rare diseases must be simplified for everyone. With the LYFE Languages Project, RDGI aims to demystify medical conditions as this will ultimately improve access to healthcare and empower individuals/communities with information so they are able to understand and discuss symptoms better with one another and healthcare providers.

The Lyfe language project was started in Western Australian as part of the Project Y Initiative and together with the Roy Hill Community Foundation. The project has helped to translate genetic medical terms into indigenous languages in western Australia. The project has expanded internationally and currently through partnership, Rare Disease Ghana Initiative is implementing a similar project in Ghana where the organization with its champions are translating complex medical terms into  indigenous Ghanaian languages.  The goal of Lyfe Languages is to retain and empower Indigenous languages and partner this to enable new technologies to equitably transform health and well-being, and to create connected communities. Importantly, Indigenous language use is associated with improved health and wellbeing of Indigenous people by the implementation of linguistically sensitive health care. Recognition of indigenous Ghanaian languages in the medical context also helps to acknowledge Indigenous Knowledge Systems; these Knowledge Systems contain profound scientific knowledge. Investigation into these systems may also provide insight into the types of medical conditions and diseases that pre-existed amongst Ghanaian population before colonization. The precise and culturally safe use of language is critical to improving both health and the lives of individuals living with rare diseases and the general population.


Written by…

Dr. Damilola Okusaga

Rare Disease Advocate |  Lyfe Language  Champion; Rare Disease Ghana Initiative

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