Have you ever wondered what the Maori term for Williams Syndrome is?
This was one of the first questions parents Jamie and Puke Timoti had when their son was diagnosed at the age of four. The answer was that there was none, until today. In collaboration between Maori linguist Keri Opai (author of Te Reo Hapai, The Language of Enrichment) and Williams Syndrome whanau the NZWSA would like to announce the creation of a new term.
Manaakiao – Williams Syndrome
Manaaki – to support, take care of, give hospitality to, protect, look out for, show respect, generosity and care for others.
Ao – the world, the globe, the earth.
‘Manaakiao’ – ‘World Embracer’ or ‘Embracer of the World’ is an amalgamation of the two words ‘Manaaki’ and ‘Ao’ and focuses on the most prominent ‘positive’ traits of people with Williams Syndrome – their kind spirit and endearing nature, their ability to empathise and forgive, and their care and selflessness. It is a deliberate focus away from a deficit model and has been co-created with Williams Syndrome whānau (see whānau narrative).
Tangata Manaakiao - Williams Syndrome person Tamaiti Manaakiao – Williams Syndrome child
Navigating a new path (whānau narrative)
Tēnā koutou katoa
Syndromes carry the stigma of something wrong, undeveloped, delayed, slow, lacking, disadvantaged, disability. Deficit-based terms that draw the attention away from the unique positivity they bring to this world. This is our story, our reality.
As a whānau Māori (Māori family) with a recent diagnosis of Williams syndrome, we wanted to turn that around and curtail the negatives and emphasise the gifts they bring to this world. Williams syndrome was discovered and defined by Dr John Cyprian Phipps Williams in New Zealand in 1961. The description is heart breaking and can be overwhelming. In one form or another we as parents went through shock and then a phase of grief, consciously and unconsciously.
With time, late-night google searches and through reaching out to other parents we began to accept and adjust to navigating this new path. One that included nurses, hospital appointments, funding applications, respite, teacher aides, IEP meetings, NASC’s, and the many other acronyms.
Our boy is full of joy, always seeking to ‘catch a smile’ and is a defender of justice (unless it’s against his favour). He has an ability to read emotions, is curious, adventurous and has many special interests. He keeps us grounded, hyperaware of his presence and can melt a hard day away with a hug and a smile, a biiiiiggg smile.
Explaining Williams Syndrome to a family member or friend can be draining. Williams Syndrome as a title provides no insight into who our children are, it then means we need to expand into the description or deficits. We wanted to give our boy a term that wouldn’t define him but that would support or add to his identity in a positive way.