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Written by Akula Sharma, Published in the Gisborne Herald

Community advocate Dorothy Taare-Smith is breaking stereotypes about takiwātanga (autism) on a national level through her mahi (work) in Tairāwhiti. She talked to Akula Sharma about how it all started and what’s to come.

Taonga Takiwātanga (autism) Charitable Trust founder Dorothy Taare-Smith was born and brought up in Kaiti.

It was a household where community service was a given.

“My dad was instrumental in the development of Ilminster Intermediate school swimming pool back in the late ’80s when he was chairman of the board.

Ms Taare-Smith’s parents Wis Taare and Hinemoa Nikora had always been involved in the community. They coached sports teams and were on several committees. “That’s where my love for the community stems from.

“It was naturally instilled into me from a very young age that I was destined to do my part for our people.

“I’d like to think I am walking in my dad’s legacy because he was a union delegate and would always stick up for the people who couldn’t stick up for themselves.

“My parents would always say no matter where you get to in your life or career you make sure you are always grounded and look after your people.

“I am really strong in that regard. I love being with the people at the grassroots.”

Ms Taare-Smith has worked for more than 20 years in the disability sector.

“I was in Auckland for 17 years and when I came back here (Tairāwhiti) I noticed there wasn’t much here for our people in terms of kaupapa Māori disability support services. So, I started a trust called Taonga Takiwātanga Charitable Trust.

“We provide support for our whānau who need it. A lot of our whānau here on the coast, particularly our Māori whānau, don’t like going into offices, they don’t like filling out thousands of forms and they don’t know what the eligibility criteria is to receive services.

“I also started a Facebook page which gave our whānau the autonomy to send a private message at 2 o’clock in the morning if they want support and advice with their struggles because they often don’t know what to do or how to access the services.

“I have been doing a lot of community mahi here — filling the gaps for our whānau because the disability sector is difficult to navigate.

“For me it is also personal, because my mokopuna (grandchild) is takiwātanga (he was diagnosed in 2019). Through my work, I need to make sure that he’s taken care of when I’m not here.

“If I can leave a legacy in his name, that’s what I want to do here in Tairāwhiti. Not only for him but for a lot of our other whānau who struggle.”

Ms Taare-Smith said whānau should have the autonomy to choose who they want for care and support, not for those people to be chosen for them by external services.

“Especially for Māori, you need to resonate with the person before you agree to work with them.

“It is not about taking the clipboard into their home, it’s about taking a packet of biscuits, sitting down, having a cup of tea with them, talking about their whānau (how they have been) and then getting into the formalities. But you must sit down with our whānau and they need to trust you.

“Statistics for Māori with takiwātanga are not great,” she said.

Her journey with takiwātanga started in the ’90s, while she was working as a teacher aide in Auckland. During that time, and later in her teaching career, she found resources and services were there for pākehā but not for Māori, in a way that Māori could understand.

“I think there is a need for more kaupapa Māori-led disability service providers in Tairāwhiti because from what I know, our people respond better to Māori than they do in most cases to non-Māori.

“We have a way of talking to our people and I think I am lucky along with a lot of my colleagues to have gone away to universities, return home and use all those skills to work with our people. We have the beauty of walking in two worlds, the pākehā and Māori world.

“In the Māori world is where we are most comfortable with our people.

“For me I have become a voice for our people and if they don’t know what to do, I can come with them to meetings and just advocate for them.

“The systems have so many hoops which whānau need to jump through in order to get support — which is very hard for them — and most often they won’t engage, they’d stay home and try to manage on their own.

“I want to make sure our people with disabilities are looked after.”

Ms Taare-Smith said takiwātanga whānau miss out on a lot of activities because of the lack of education and awareness in our community.

“These kids and families whakapapa back to Tairāwhiti so they shouldn’t be excluded from going to the Olympic pool, local park and supermarket.

“A lot of whānau have shared that their kids would play up in The Warehouse and Pak’nSave and the parents would get judgemental looks.

“Our kids have every right to be in this community and they shouldn’t be judged or stared at. More importantly their parents shouldn’t be judged while out in the community — their community.

“It’s already hard for whānau and if we exclude them from being part of our community, they would feel isolated.”

Ms Taare-Smith is organising a Christmas party for children with special needs, which came about when she saw there was a national event but Gisborne was not a part of it.

“My thinking is that our kids shouldn’t miss out.”

Ms Taare-Smith ran a takiwātanga wānanga (workshop) series for whānau and professionals — the first of its kind — to raise awareness about takiwātanga.

“Thanks to Trust Tairāwhiti they gave us funding to run marae wānanga for the most highly populated Māori communities in Tairāwhiti.

“We hosted our wananga at Te Wananga o Aotearoa, Tikitiki, Waituhi and Frasertown. Frasertown wasn’t funded (but) our community helped to fundraise.

“Right now we are on hold because our marae are dealing with the Covid-19 situation. We are looking at doing online wānanga.

“We have offered free professional development to teachers in low decile schools with a high population of Māori children.

“I have been invited to sit on a National Living Guidelines group. This is a group of experts in autism who advise the Ministry of Education and Ministry of Health. I have been invited to advise on takiwātanga — how we are here on the coast and how our parents struggle.

“We know autism doesn’t discriminate. You can be Māori or pākehā, rich or poor it doesn’t matter so I’m privileged to be a voice for our people.

Ms Taare-Smith’s work in Tairāwhiti is gaining momentum around New Zealand and the globe.

“A professor from Canada has got in touch with me because she has heard about the good work we have done here in Tairāwhiti.

“We have been approached about the wānanga from many regions in New Zealand but my first priority is Tairāwhiti.”

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