Strong Voices

When Manaakiao was diagnosed with Williams syndrome at the age of four, his parents Jamie-Leigh and Puke Timoti asked what the Māori term for Williams syndrome was.

The answer was that there was none. But, in collaboration with Māori linguist Keri Opai (author of Te Reo Hapai, The Language of Enrichment) a new term, Manaakiao, has been created for Williams syndrome.

With their new diagnosis for Manaakiao, Jamie-Leigh and Puke approached Keri Opai to discuss identity and strengths-based language for him. Keri then met with New Zealand Williams Syndrome Association members in the Waikato to learn more and to spend time with the members and their whānau.

After this time of building relationships, or whakawhanaungatanga, Keri asked Jamie-Leigh and Puke for permission to use their son’s name, Manaakiao.

“Those with Williams syndrome are known to be kind with high emotional recognition. When seeing someone needing emotional support, they are there to awhi and lift the spirit of the other – embracing all without prejudice,” says Jamie-Leigh.

She says Manaakiao, meaning ‘world embracer’ or ‘embracer of the world’, is an amalgamation of 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 move away from a deficit model and has been co-created with Williams syndrome whānau.

“As a whānau Māori 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,” Jamie-Leigh and Puke Timoti said in their story published on the New Zealand Williams Syndrome Association’s website.

“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,” they said.

“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, NASCs, 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 big smile.”

Caption 1: Manaakiao, “a boy full of joy”, has helped to define a new Māori term for Williams syndrome.

Caption 2: The Timoti family – Back row (from left) Puke, TeAotarewa, Maioha and Jamie-Leigh. Front row (from left) Manaakiao and Te Haruru. Photographs by Alan Gibson and used with permission from Your Way | Kia Roha.