Alex Maddox, Kaiwhakarite at Te Wānanga o Aotearoa, will begin He Waka Hiringa next year with the goal of helping other whānau who are on their own journey supporting tamariki with vision impairments.

“I was given the opportunity to present my kaupapa proposal at the national conference for Parents of Vision Impaired NZ recently. It’s pretty simple: whānau are the experts and know their tamariki better than anyone else. We’re the ones who show up to every appointment, every meltdown, every moment of happiness. Whānau voice belongs in research, in policy, in every room where decisions are made.”

For her and her whānau, son Phoenix, daughter Kiera, and husband Mason, the lived experience matters.

Her son Phoenix will turn 2 in December and has been the driving force behind Alex’s Rangahau passion. From birth she knew something was wrong with her beautiful boy; Phoenix has Albinism and is also the only tamaiti in Aotearoa diagnosed with Hermansky-Pudlak Syndrome.

Her own experience being Phoenix’s māmā and navigating care and support for him, hasn’t always been easy, but has sparked her interest in Rangahau.

“Too often the whānau voice is left out of the decisions that shape our children’s lives. I want to understand about the experiences, needs, and aspirations of whānau with blind, deafblind, and low-vision children, and how those voices can reshape the systems meant to support them.”

He Waka Hiringa, the Master of Applied Indigenous Knowledge at Te Wānanga o Aotearoa, involves enrolled tauira planning and completing a community-based project. Alex wants to have Wānanga and Talanoa – spaces where whānau can have the opportunity to gather, share and be heard – through poetry, waiata, storytelling, and kōrero.

“The heart of the kaupapa is the child. The strength of the kaupapa is the whānau. The future of the kaupapa is ours to shape.”

Alex’s dream is to continue on to her PhD one day, and influence policy reform.

She’s starting closer to home – recently becoming the tangata whenua representative on the Parents of Vision Impaired (NZ) Inc. board. To prepare for her presentation at the conference, Alex was mentored by kairangahau from Te Manawahoukura.

"A year ago, I wouldn’t have given He Waka Hiringa a second thought, let alone applied. Yet, with the support of Te Manawahoukura, it became a reality. Everyone I engaged with has been positive, compassionate and excited! Their door has always been open, and I’ve always felt safe in their care. They’ve been there to fill the gaps that I could not. The relationships and doors opened for me and my whānau has been life-changing, and now I’ll be able to give back to other whānau with the manaaki and aroha that has been given to me.”

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