Welcome to The Hui ` Maori current affairs for all New Zealanders. E taro ake nei... 20 years old and fighting for her life. - Why did you want to talk to us? - I wanted to share my story about heart disease. - OK, out wide. - Latesha Poharama struck down by the disease that took the life of her twin brother. - No words can explain what I felt like, you know? To me, they're only babies. - An intimate look into Latesha's courageous battle. - Chur! - Then it's Hori's Pledge. We meet the artist driving the 'This is Aotearoa' campaign, Hohepa Thompson. - What we're doing is trying to offer people more matauranga around the word Aotearoa... and the fact that we're not trying to rename New Zealand at all. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2022 - In April, The Hui received a heartfelt plea to our inbox. A young Whangarei wahine wanted to share her story about her inherited heart condition, an illness that had already taken some of those closest to her. It was a tono we couldn't turn down, with premature deaths due to cardiovascular disease a leading killer amongst Maori. Here's Ruwani Perera with Latesha's story. (INTROSPECTIVE MUSIC) RUWANI PERERA: It can be confronting to see someone so young so sick. At just 20 years of age, this Whangarei wahine is struggling for every breath as her heart battles for every beat. - Hello, sissie. - Hey. (MUSIC CONTINUES) - Latesha Poharama wanted to share her story with The Hui and the devastating effects heart disease has had on her and her whanau ` cardiac conditions a major killer amongst Maori. Latesha is a shadow of her former self. This once-outgoing social butterfly was diagnosed with cardiovascular disease two years ago when she was just 18. - I had shortness of breath, and... I was wondering why I had... blood in my spit. - Gone was the relative carefree life of a teenage girl ` replaced with grimly regular visits to Whangarei Hospital. Can you just tell me what life was like before this illness? - Life was fun. I was out there living my best life. - In Latesha's case, her heart disease is hereditary. She has a gene called BAG3, passed down from her mother's side of the whanau. It's believed to have caused the deaths of many in her wider whanau. Do you ever think, 'Why me?' - Yeah, sometimes. Sometimes I think, 'Why us? Why me and my brother?' - That brother was Latesha's twin, James. The whanau thought he had a simple chest infection when he was admitted to Whangarei Hospital. But the BAG3 gene James and Latesha silently carried kicked off in both of them at the same time. For grandmother Rayna Tuhimata, it was a heartbreaking discovery. - When I'm visiting James, she's in the hospital over the other side of the wing, and I'm finding all this out. Actually, I was quite shocked for James, because he was a very fit boy. You know, he was a hard worker. He worked in the forestry. - Can you tell me about James? - Um, yeah. (CHUCKLES) He was funny, naughty. And... he'd do anything for me. - What was it like for you seeing him sick? - It was freaky. It was traumatising. I wanted to do as much as I could for him, but... I didn't have enough powers. - Tragically, James lost his fight for life a few weeks after being diagnosed. He was just 18. What was it like to see your grandson pass away at such a young age? - Oh, I don't know. No words can explain what I felt like, you know? To me, they're only babies, mm, and they shouldn't have had to go through this. - Now Rayna is left to care for Latesha the best she can. - The bulk of the time, I've been her own caregiver. - But you're 72. - Yeah. - Yeah. A good 72, a great 72. But, yeah, you don't get any other help? - No. - Apart from whanau? - No, no. (GENTLE, CURIOUS MUSIC) - The only respite Rayna gets is when Latesha's stepmother, Stacey Walker-Haturini, visits from Kaiwaka a few times a week. She's incredibly close to Latesha, forming a special bond since Latesha was a young girl. What does a good day look like for her? - Getting up, toilet, shower, breakfast, you know, start the day. And as long as she's smiling, really, and got a... happy and looking for her phone, she's all right. (CHUCKLES, SNIFFLES) - Today's a bad day, though, eh? - Today's a bad day. Yeah. It's just hard for me, like,... cos that's who Tesha's comfortable with, me and Rayna, and I'm far away. OK, out wide. - (GROANS QUIETLY) - And around. - She loves your mirimiri, eh? Gives her some comfort. - Yeah. (PENSIVE MUSIC) - The BAG3 gene that Latesha and her brother James carried is rare, found in only 2% to 3% of cardiomyopathy cases, a disease that weakens the muscle that pumps the heart and can lead to heart failure. Cardiologist Dr Will Harrison explains. - It's a relatively small number of people who have cardiomyopathy in general, but often, these are very young people that are affected and often multiple family members. - Cardiovascular disease is the leading cause of premature death of Maori ` twice that of Pakeha. - One of the reasons that our people's cardiovascular health outcomes are not as good as non-Maori is because we as a people overall... are less likely to receive the best evidence-based treatment for those conditions. There's complex reasons for that, but one of the key reasons is that currently, the health system does not treat Maori... or Pasifika or other minority groups equitably compared to non-Maori. (ALL SING WAIATA) - Down in the Waikato, the DHB is hoping to catch cardiac cases early. They've launched an outreach programme that specifically targets Maori communities to try to detect heart conditions early. - Kia ora koutou katoa... - Backed by Maori health champion Lady Tureiti Moxon, the initiative was launched earlier this month at Kirikiriroa Marae in Hamilton. The first-of-its-kind service delivers heart healthcare direct to whanau, particularly useful for those living in rural or remote areas. Cardiac nurse specialist Patumahoe Leaf-Wright says early diagnosis and prevention are critical for Maori communities. - I bring all of the screening to them, and all of the screening that I do provides answers right there and then. So I do all of this in a way that observes tikanga, that doesn't make them feel like any of it is their fault, and it's mana-enhancing, and that's the whole point, right? - And it's already picking up cases which, with the right treatment, will ensure the person doesn't die young from heart disease. Can you tell me the age of the youngest person that you've seen? - In their early 20s. The beauty of it is that if I find something in someone who's in their early 20s, I already know that I've essentially saved their life, cos this is something that they wouldn't know about until they had turned up, probably in 20 years' time, so sick and... so oppressed by a system that doesn't acknowledge that they really had no power in this disease that's happened to them. And so in a 20-something-year-old that I've found something, I've just saved a whole lot of misery for the children that they haven't even had yet. (PENSIVE MUSIC) - But for Latesha, no early heart check could have helped. The type of heart disease she has ` inherited dilated cardiomyopathy ` often occurs in late adolescence. Most die within five years of diagnosis. - It's definitely not right to see a young 20-year-old girl suffering like that. (ELECTRONICS HUM) - Have the doctors told you what a future looks like? - Said that I wasn't going to make it, but... (SIGHS) in my heart, I believe... I will. And I'm not gonna let no one tell me if I'm gonna die or not. - Are you a fighter? - Yeah, hard. (MELANCHOLIC MUSIC) (MAN SHOUTS HAKA) - True to her word, Latesha fought hard to the very end. (GROUP PERFORMS HAKA) She was laid to rest at Tarakaka Urupa in Kaitaia, beside her great koro Sir Graham Latimer. - I love you, family! - For her nana, Rayna, it was the second grandchild she had to bury from this terrible disease. (MELANCHOLIC MUSIC CONTINUES) What do you want people watching this story, your story, what do you think they should take away from this? - If you have this type of disease... and you're struggling,... just keep fighting... and never give up. - Okioki mai ra, e hine. Na Ruwani Perera tera purongo. Next, we meet the artist behind Hori's Pledge. Hohepa Thompson wants to officialise the name Aotearoa. It's a kaupapa he's taking on the road on what he's called the Hori's Pledge tour. Kei a D'Angelo Martin te roanga ake o nga korero. (WHIMSICAL CLASSICAL MUSIC) - D'ANGELO MARTIN: Show us your reversing skills, chief. - (CHUCKLES) - Maori artist Hohepa Thompson, also known as Hori, is making a statement. - What a` (LAUGHS) Don't worry what this guy and his mate said. This is Aotearoa. - 'This is Aotearoa' is his koha to the debate around the use of the name Aotearoa. - What we're doing is trying to offer people more matauranga around... the word Aotearoa and the fact that we're not trying to rename New Zealand at all. (RELAXED HIP-HOP MUSIC) - Hohepa is hati Maori, and it shows through his artwork. - A lot of the work we work on is on kaupapa Maori and issues that affect our people. - Raised in Otaki on the Kapiti Coast, the 37-year-old was born into te ao Maori. - Growing up, I was raised with te reo Maori me ona tikanga. As I kind of went into high school, I decided to stop that side of me, puta tera... ki te taha, right over the side, and decided to leave that world and follow a more Pakeha ao and go down that world. Yep. - Why was that? - You know, I didn't think I could get a job, you know, knowing te reo or doing that. It just didn't even cross my mind. I didn't want anything to do with it. (RELAXED, CURIOUS MUSIC) Although it's the biggest regret in my life, if I hadn't... gone down that journey, I wouldn't be able to do this. (SPEAKS TE REO MAORI) - It took five years of living in Australia to reignite Hohepa's aroha for te ao Maori, returning to Otaki in 2011. - When I came back home, I wanted to... to hoki ki toku reo and toku Maoritanga. So I decided to kind of start Hori. Ka kite. - Bye. - Te whare toi o Hori is his turangawaewae and where he created his latest art collection, honouring the hopes and aspirations of his tupuna. - It's about showing people what cancel culture looks like and giving them a kind of shoe on the other foot whakaaro around it ` whether we were to take Pakeha names or Pakeha people in history and take that out of history. - And do you think it may... perhaps have caused an uproar with those who are in disagreement with your whakaaro or your concept? - Yeah, of course. You know, there are a lot of... New Zealanders ` they tie into these people` doing this is showing people, 'Can you imagine if we started crossing out and taking out those names from our history?' and showing them an example of that happening. So it is. It's trying to put the conversation back into their side of the court and ask those questions, 'Imagine if that happened to you.' Chur! - And so Hori set off to travel around Te Ika-a-Maui with a message. (LIVELY CLASSICAL MUSIC) And with his billboard labelled 'This is Aotearoa', he hopes to raise awareness and potentially spark conversations amongst whanau. - It's a dumb name, New Zealand. It's like... I don't know if there's an Old Zealand in Holland or whatever, named by Tasman. But, yeah, let's get it back to Aotearoa. - Yeah, definitely. I think that's a real integral part of our culture, and we should definitely refer to it as that. - Proud to say Aotearoa as well as New Zealand ` it's all part of our heritage ` but I think Aotearoa is a fine name. - Hohepa is also using social media to get his message across, challenging anti-Tiriti rhetoric like Hobson's Pledge. What do you hope to achieve, and what type of conversations are you wanting to spark? - I hope to actually, at some point, be able to sit down, whether it's with Brash or anyone else that may come and talk to me and actually give them... give them that lens and give them that matauranga. (CURIOUS MUSIC) - And as luck would have it, Hori got to do just that. Hobson's Pledge leader Don Brash visited Massey University in Te Papaioea to talk about free speech. - Far from us being racist to attack He Puapua, it is the He Puapua report itself which is racist. - Brash's korero touched on various kaupapa, including He Puapua, Three Waters, the Treaty of Waitangi, Hobson's Pledge and matauranga Maori. - Do you know what matauranga means? - My knowledge of it, you mean? - Yeah. - Very little of it indeed. - OK. - Very limited indeed. - You say on Hobson's Pledge, 'It is through knowledge and understanding that we can move forward as one.' I find that a bit of a contradiction, as you have no knowledge and no understanding of matauranga Maori. - How concerning is that, when he, in fact, doesn't have an understanding of who Maori are? - It's concerning only because the platform that he has, and there's a lot of other people that agree, and again, they are probably people that have no understanding of our world, so what we're trying to do with the Hori Pledge is to give these people matauranga Maori. - It's something that Hohepa is committed to achieving through his mahi toi. - I can see things from each side's perspective. And with my work, I try to give some context into why we think the way we do and why Pakeha might not understand that. So it's kind of bridging the gap between those two worlds. - And he believes those two worlds can be united under the official name Aotearoa. - And I hope in my lifetime I get to see that happen, and I'm confident that that will happen. We can also remember that history of that time when, you know, in Aotearoa, we called it New Zealand. You know? We can still whakamana that. (RELAXED HIP-HOP MUSIC) - Na D'Angelo Martin tera ripoata. Ka korero au ki te Minita Whakawhanake Maori Willie Jackson. so to discuss where and how it will be spent, I'm joined now by the Minister for Maori Development, Willie Jackson. Tena koe. - Kia ora. Kia ora, Mihi. (BOTH GREET IN TE REO) - So where are we going to spend this billion bucks? - Well, one thing we know is we need investment in our people, so Maori-targeted funding. And we've got to be clear about this, because, you know, your mates in the Maori Party, Rawiri and Deb, love playing games, you know? They love saying, 'Well, 1.2 billion for all of Maori.' You and I both know ` you've been around a long time ` that's just the targeted spend. That's not 1.2 billion for 800... (CHUCKLES) for 800,000 Maori, is it? It's 1.2 billion for targeted groups, and we're talking about Maori providers ` might be 100,000 of them ` and we'll get the rest with our other strategies. - Where's the biggest wins? - I think the biggest wins are in health. I think the biggest wins are in health and Whanau Ora, you know? Particularly in health, I'm really proud of what we've done. Again, despite what your mates have been saying, we've had huge support for what we're doing in the health sector, cos this is unprecedented. So, we've got, as you know, 298 million being put in the health... for the Maori Health Authority. But there'll be also 300 million that transfers across too, Mihi, so you're talking 500 million. And as well as that, the big thing with the health kaupapa is our health authority will be working with the Pakeha health set-up, New Zealand Health. This is the first time that this has happened. So this nonsense about, oh, zero point zero` It's just nonsense they're coming out with, and I'm really pleased with how we've set this all up. Our health professionals are behind us, and we're working with the Health Authority. For the first time, Maori will have a say on what's happening with everything in this country. - I guess that is the criticism, is that initially, it was thought that the Maori Health Authority would be funded the big money, but in fact, what's happened is it's the direct commissioning that will get all the big money, and the Maori Health Authority is a 'clearing house', to term a phrase that's been used by a minister before. But` So do you think` Has that come about because of the pressure that you've been under? - I think the Maori` I'm so proud of the Maori Health Authority, and we've had a lot of support from John Tamihere, whose wife is on it. Awerangi Durie, fantastic advocate. You know, for the first time, we've got this unprecedented Maori Health Authority, and it's gonna be overseeing a budget of over half a billion dollars that will build up. But the big thing is there's 11 billion on the other side. There's 11 billion on the other side, and they get a say on that. Anything and everything Maori our Maori Health Authority has a say on. It's like the budget. We got 1.2 billion. That comes to about 5%, Mihi, just for Rawiri and Deb, who keep talking about 0%. You know how good that is, Mihi? We're talking about 350 million per year of new money. When you compare it to past groupings, whether it's Labour, National or Maori, they used to get about 30 million a year. We're getting 10 times the amount, which is about 5% of the new spend, cos 1.2 billion is 5% of 6 billion in terms of the new spend. - One of the other areas is the media. So, following the Maori media sector review, there's been $40 million over two years in Budget 2022 ` 8 million for strategy and development; 12 million to iwi media, collaboration ideas for news and current affairs; and 20 million for content creation. So what can we expect to see with this funding? - We're gonna see something new, something different. Your producer has worked on this strategy for me and for us. - Well, lots of Maori have across the sector, eh? - Oh, absolutely. I'm really proud of the work in the last two years. My job was to complement that stunning team I had, which was Annabelle and Nicole... Nicole` What's Nicole's last name? - Hoey. - Nicole Hoey, sorry. - Bailey Mackey. - Bailey Mackey, Jason Ake, Peter Lucas. I mean, these people are brilliant. Scotty Morrison. - So do you think we're going to see more regional news coming from iwi radios, collaborations? - The details I can't give now, cos it's going through Cabinet at the moment, but we know what the framework is. It's about more news. It's about promoting shows like this. It's not about using our Maori language money for Maori` for shows in English. - That's right, because it's for content that reflects te reo culture, stories and perspectives of Maori. So leaving that to the side ` that's 40 million ` there's a whole lot of other millions of dollars that's been set aside for the merger. Do you see` Do you have an expectation that Maori will be part of that too? - Absolutely. I've played` I've worked with Kris Faafoi in terms of the wider broadcasting story and kaupapa, but my job in the last couple of years is to get money. I've got $80 million in over the last two years. That works out to about 15` I know our people are still moaning, but it's still 15%, 20% of the overall budget. You'll know what the public media budget is. That's a good start, and I think we've got the frameworks in place and complementing shows that should be funded and supported, like this show, like the Marae show, Moana's show. This is the way to go. I'm excited about the strategy, which can't be released right now, cos it has to be green-lighted by Cabinet` - But you can guarantee that Maori are involved in the strategic and the implementation? - All the way through, we've got Jim Mather and Bailey Mackey, for instance, on the wider public media sector strategy. We've got some Maori driving this who know what the set-up is. As I said, Annabelle Lee and people like her and Scotty Morrison, Peter Lucas, they know it. Nicole. They know this. Jason Ake. This is a different set-up. I know people are getting a bit frustrated. They want it here and now, but I have to get it` I have to get it through the process. - I guess the thing is is that Maori, in terms of new media and new platform, have been doing this for 20 years, because we haven't had those opportunities on the linear platforms. - That's right. - So, you know, I think what you're hearing is people saying, 'We know. We've been doing this. We wanna be part of it.' - And just remember that the money that I got and the support I got was the first money for over a decade. So I'm saying, first of all, secure the resources, secure the funding, and the strategy will follow. - Ka pai. I just wanna talk to you about something that was raised, actually, on social media, where we do lots of wananga and tautohetohe. So, it's the archives. They've reduced their hours, I think, in Auckland. Used to be eight hours under this government, and it's gone down to four hours a day. Sometimes, it requires an appointment. So for people who are doing the Treaty claims work and stuff, it's really difficult. Some have said it's a Treaty breach. I mean, what's going on there? As the Minister for Maori Development, wouldn't you be supportive of providing those historic records? It's the only place we can get them. - Well, I checked on that. It's 10 to 3, apparently, their hours. - 9 to 1 in Auckland. - 9 to 1 in Auckland. 10 to 3 in Wellington. Yeah, I don't know if it amounts to a Treaty breach. I think it's a Treaty breach if we're obstructed from getting information. It's incredibly... - Can't you throw some more money at it so they can open up? - Yeah, well, that's the key, you know? People saying, 'Oh, you didn't get enough money.' No, we never do. You know? We went for two to three times what we got. - Next time. - But I think we're quite comfortable where we're at. We've got an opportunity, and that's what it's all about. The framework's in place, Mihi. - Kia ora. Tena koe. - Kia ora. - Kei hoki tenei manu korero ki tana rongo hua. Noho ora mai ra. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2022 - Ko te reo te take. - Na Te Puna Whakatongarewa Te Hui i tautoko.