Supporting independence: How a story of breaking barriers is inspiring the need for change!
“Don’t assume that I don’t understand or hear anything because I’m non-verbal. I’m dedicated, strong-minded, determined, creative, and have a communication skills strength,” says Ngatamaine (Nga or Maine), who was born with cerebral palsy in Hastings. Her journey is one of perseverance and strength. “I have got a sense of humour from my family and my Cook Island community because they are hilariously funny as well.”
Life hasn’t been easy for Nga. “I’m a normal person. I understand extremely well. I get very frustrated because I can’t talk and I have to use my alphabet chart that I created and my computer to talk, I can’t join in conversation very easily. I can’t eat, drink, toilet, shower, bath or dress myself. I have to rely on other people for everything.”
Living with disability has meant facing many obstacles. At just three years old, Nga was taken from her parents’ home and then moved around a lot while growing up. “One of the places I had to stay at was because I had no equipment like a little wooden chair, commode, standing frame, manual wheelchair, electric wheelchair and also, I had nowhere to live.”
One Christmas, with nowhere else to go, Nga was moved to aged care for six weeks. “I hated staying there because it is a home meant for old people. I felt sorry for my mate that lived there, they were only seventeen years old!” Despite challenges, Nga doesn’t let her support needs define her. “A Social Worker wanted me to go to a normal school because he knew that I was a very clever child.” For example, Nga was way above her class level for Māori language.
When Nga switched careers from computing to social services, she faced doubt. “Everybody just laughed at me. They said Nga you can’t because you are in a wheelchair, you can’t speak, you can’t type fast, how can you communicate with people, how can you do the presentations and writing? I listened to no one, and I went my own way.”
After living independently for twenty-two years, Nga had to give up her home when her Support Workers retired and finding new help was difficult. “I loved living in my house. I wasn’t ready to give my house up because I wanted to keep my independence.” Although Nga would prefer to be back in her own house, she now lives at Enliven Disability’s Havelock North site which she likes because it’s close to Flaxmere. Nga has support and freedom to live life as she wants to, “I still can go out and come home drunk in the weird hours of the morning which I love to do on Saturday night.”
Nga advocates for change and has been part of the Faiva Ora leadership group for nine years to enable Pasifika people with disabilities to advance and champion Pasifika disability issues by having their views represented at the highest levels in New Zealand. “I make sure that I still do things for myself and don’t let the Support Workers do everything for me, for example book the taxi, text Mobilities people if my equipment is broken, do the shopping online and do the online groceries for the whole house with a Support Worker, make my own appointments. I still do the interviews for Enliven Disability’s new staff process. I can do more things than any other flatters do.” Nga has joined the Hawke’s Bay Cook Island Committee to change people’s mind set about people with disability and making our community better.
Nga is saving up to visit the Cook Islands in three years. “When I want to do something that I want to, I just go for it and I don’t let anyone or anything let me down.” Over the years, Nga has achieved certificates in Te Reo Māori, Business Information Systems, Business Administration, Introduction to Social Services, and Mental Health and Addictions Support. Nga’s most proud of her first paid job as a Media Assistant for Kāpō Māori Aotearoa, where she’s worked for four years to support the blind and visually impaired. Everyone that meets Nga is inspired by her outlook on life, “I feel very proud that I’m being an inspiration to other people around me every day.”
Accessible homes are not a luxury but a necessity. Every brick you give will support younger disabled locals to thrive.
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Tōku Papa’anga – My Genealogy
(As written by Nga)
Kia Orana Tatou Katoataoa
Hello Everyone
Ko Ngāpuariki tōku Vaka
My Canoe is Ngāpuariki
Ko Maunga Pū tōku Maunga
My Mountain is Maunga Pū
Nō Aitutaki tōku Papa
Aitutaki is my Island on Dad’s side
Ko Tautu tōku Oire (Dad’s Village)
My Village is Tautu
Nō Mangaia tōku Mama
Mangaia is my Island on Mum’s side
Ko Tamarua tōku Oire (Mum’s Village)
My Village is Tamarua
Ko Te Autapu tōku Marae
My Marae is Te Autapu
E nō ana au i Havelock North
I live in Havelock North
Ko Ngatamaine (Ngata-maa-ee-ne)
Emma Kimiravenga Tauranga tōku ingoa (Nga)
My name is Ngatamaine (Ngata-maaee-ne)
Emma Kimiravenga Tauranga (Nga)
Nō te Māori Kūki ‘Airani au
I’m a Cook Islander Māori
