Image: Tina Tiller
Image: Tina Tiller

InternetJuly 29, 2022

Inside the fight for Māori data sovereignty

Image: Tina Tiller
Image: Tina Tiller

Small organisations around Aotearoa are placing Māori values at the forefront of their digital services. For IRL, Shanti Mathias talks to some of those working towards a version of the internet that prioritises the needs of indigenous people. 

Initially, Kaye-Maree Dunn (Te Rarawa, Ngā Puhi) wanted to make Indigicoin, the world’s first indigenous cryptocurrency. As a veteran of the Māori social development world – she’s also worked in community housing and the Māori Land court  – she was intrigued by the possibility that blockchain technology could help create more equitable financial outcomes for Māori communities. 

When she met software developer Ben Tairea (Ngāti Nurou, Kuki Airani) at a hackathon, the plan changed: how could they help different iwi and hapū access vital information about their whakapapa without placing that information at risk of exploitative, offshore companies? 

“We set out to design a decentralised system for archiving traditional knowledge and storing genealogy and whakapapa,” she says. The result is Āhau, a tool designed for Māori individuals and groups to store information about their ancestry; she and Taiera are the directors of the company. Dunn is quick to differentiate Āhau from other “off the shelf” genealogy services, such as ancestry.com. 

“Co-creation and co-design has been critical to our approach,” she says. “Because we’re working in the space of genealogy we are very concerned about the sanctity of this sacred knowledge of our tūpuna, our elders and whānau being online.”

Incorporating and acknowledging tikanga within Āhau was vital from day one. “Genealogical information is tapu, and needs to be handled carefully; it shouldn’t be handled near food, which is noa,” Dunn says. As they developed the repository, the designers said special karakia and considered fasting as they wrote code. Their values were integrated into the company’s constitution, setting up processes for what would happen if there were disagreements during the project. Collective input was also prioritised; the service was co-designed with the communities that would use Āhau. “This is a grassroots technology,” Dunn says. 

At a technical level, Āhau is a distributed application, which means user data is stored only on their own device or within networks of their choosing. Users can access information online and offline; a Pātaka, or cloud server, is integrated into the technology, giving the user choice about what information is uploaded and who can access it. The software is also open source – Dunn’s dream is for other indigenous communities around the world to be able to adapt the software for their purposes. “I want Āhau to be a ubiquitous piece of software across our communities to help access support, tribal knowledge, and government financial services,” she says. The application isn’t quite there yet, but “it’s a doorway”.

Digital mana motuhake could change what the internet looks like for the better. (Image: Tina Tiller/Getty Images)

Āhau and its privacy-first decentralised infrastructure is part of a movement for Māori data sovereignty, part of a global conversation about what indigenous sovereignty looks like online. Honouring Māori rights in the data realm is an urgent issue: the government in Aotearoa holds huge amounts of data about Māori, and there are fears that this could be abused with facial recognition technology, or that the government’s agreement with Amazon Web Services will prioritise offshore profit over Aotearoa-based data protection.

While the applications to digital technology are newer, the story of who holds information has always been about power, says Tahu Kukutai (Ngāti Tiipa, Ngāti Kinohaku, Te Aupōuri). “The powerful collect information in a way that benefits themselves,” she says, pointing out that censuses have historically been a means to count the population for military conscription and taxation. The professor of demography at the University of Waikato, also director of ​​Ngā Pae o te Māramatanga, the Māori centre of research excellence, has worked extensively to understand data sovereignty in a Māori context. She founded Te Mana Raraunga, the Māori data sovereignty network, and working with the Iwi Chairs Forum to establish a relationship with Statistics New Zealand to manage iwi data. (However, she spoke to me in a personal, research capacity.) 

In the colonial context, including with censuses, data is something that is taken from people and pooled by the government to maintain control of people and land. As land sovereignty asserts the rights of traditional owners, rather than the state, to have rangatiratanga over the whenua, data sovereignty does that for information. “The rightful authority for indigenous data is not with the state, but with indigenous people,” she says. 

Tahu kukutai sits on a couch and looks at the camera smiling
Tahu Kukutai has been working in the field of Māori data sovereignty for many years (Photo: Grant Maiden/University of Otago Press)

There are specific policy changes at the central  government level which could help improve data outcomes for Māori, says Karaitiana Taiuru (Ngāi Tahu, Ngāti Kahungunu, Ngāti Rārua, Pākehā), a researcher who specialises in mātauranga Māori and digital sovereignty. “I’d like to see a Māori equivalent of the Privacy Commission to deal with legislation protecting Māori from [data] bias,” he says. “We need to normalise our tikanga and traditional knowledge – I’d like to see kaumatua and mātauranga experts who are involved in the community, not academics, be part of decision making.”

The 2018 census epitomises why the government needs to rethink how they gather and use Māori data, Kukutai says. Its digital-first approach has been blamed for around 30% of Māori being left out of the official count, a result which could have negative funding impacts on Māori populations for years to come. The government has “an appetite to engage with Māori data sovereignty,” she says, although processes to do this have largely not been formalised. She says that good data governance drives the government towards higher data standards that are good for everyone, “especially communities that are over-surveilled and stigmatised”.

But responsibly dealing with indigenous data is too urgent to wait for government action. “True transformation is outside the kāwanatanga system,” Kukutai says, referring to how the system of government agencies engage with information about Māori. “Government has a hard time [giving up] control and stepping aside.” 

Another organisation not waiting for the government to assert their Māori data sovereignty is Te Hiku Media, a Far North-based iwi radio station turned multimedia organisation. In 2018 Te Hiku Media launched a competition to gather recordings of people speaking te reo Māori through their Kōrero Māori app, in the hope of developing a speech-to-text programme to transcribe the thousands of hours of archival recordings held by the radio station. Within 10 days they had received hundreds of hours of language content – enough to develop a transcription app with a remarkably low error rate. This corpus of recorded data is incredibly valuable; Te Hiku Media had to fend off corporations hoping for access to it to develop their own Māori language resources. 

Some of the Te Hiku Media team, with Keoni Mahelona on the far left, at their radio station. (Photo: supplied)

The next stage is Rongo, an app that launched earlier this month. “We’ve built Rongo to improve te reo Māori pronunciation – there’s a risk that English will impact the sound of te reo, and that’s already happening,” says Keoni Mahelona, the chief technology officer of Te Hiku Media. Mahelona, a native Hawaiian, has used his background to build values of sovereignty into Te Hiku’s tech platforms. The app will allow people to practise their te reo pronunciation by speaking into their phone and receiving feedback. All data entered into the app is covered by Te Hiku Media’s Kaitiakitanga licence, which is based on values outlined by Te Mana Raraunga. “Your data is only ever used for the benefit of Māori and Māori education,” Mahelona says. “Third parties using our tools are prohibited from doing surveillance, doing any bad shit or unethical things.” 

Mahelona contrasts Te Hiku’s work with the international language learning app Duolingo, whose indigenous language offerings – including ʻōlelo Hawaiʻi – are built on the labour of indigenous people, without sharing the profits. “Is there any better expression of American capitalism [than] a corporation profiting from teaching the language that was beaten out of our people?” he asks rhetorically.  

Indeed, while there are some inroads to be made with indigenous data sovereignty and governments, it’s much more difficult to ask big technology companies to respect people’s rights to their data. “You have more sovereignty if you build your own platform, it’s harder to effect changes to those mainstream products,” Mahelona says. Te Hiku Media have chosen to host videos themselves, rather than embedding YouTube links on their website. “There is mana in the stories we tell and we can’t give it away to American platforms,” he says.

To make these digital alternatives to big tech possible, digital expertise in Māori communities needs to grow, Dunn says. “We need more indigenous developers, designers, technologists, tech architects, archivists…” she says. It’s a long list, but it’s vital to develop these skills. “We can create a new industry to protect the memories of our elders – our culture, language, and history. That is a real gift for us to have in New Zealand and around the world.” 

Exercising indigenous data sovereignty requires building technological expertise in Māori communities Photo: Getty Images

The movement to assert indigenous data sovereignty online presents an alternate way of being online. The Web 2.0 era, characterised by the dominance of enormous social media platforms filled with user-generated content, is homogenising. No matter where you live, if you use Google or Facebook, the architecture and interface of these platforms are the same, even if the content or language is different. These corporations have profited because they’ve treated all user data, no matter who generated it or why, as a commodity. For instance, Instagram gets away with prioritising video in its feed despite users wanting to see photos because it is more interested in convincing its funders that it can beat TikTok than serving the users it already has. 

Systems like Āhau and Rongo are based on a completely different ideology: they are designed for specific people, in specific places. The goal is not to profit by increasing the scale but to continue to serve that community’s needs. It’s a contrasting vision of the internet, localised and customised to serve a small group of users very effectively. Because the intent is not profit or scale, individual and community users with specific needs are valued over lines on a profit sheet. “We have a small user base because we’re going slowly – I want my own family, my own community to trust Āhau,” Dunn says. For her small organisation, that trust is much more valuable than for big tech, who increase users by making their services a default for communication. 

But while all users, indigenous and otherwise, could benefit from digital services focused on creating and maintaining trust, a clear profit model doesn’t necessarily exist yet. Te Hiku Media receives public funding; Āhau has received a range of grants, and while the service will remain free, Dunn hopes to generate income through providing extra data storage, and perhaps looping back to her initial idea of an indigenous digital currency in the future. While big tech remains dominant for now, there is enormous potential for a diverse range of indigenous technology alternatives which are integrated with indigenous values. 

“Data is an extension of who we are, it’s an extension of what we value,” says Kukutai. Seeing how Te Hiku Media is prioritising  data sovereignty, as well as the many smaller projects with incredible potential, gives her hope for how mokopuna may be able to express mana motuhake through data in the future. “Data can be a powerful enabler for doing and thinking differently … it can bring us together, make us more accountable to each other, it can create benefits and distribute them more equally, it can make us better stewards of te taiao and everything in it,” she says.

“But that needs a dramatic disruption of how we think about and interact with data – what Te Hiku is doing is a step towards that.”


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period apps, caladeners, and a uterus on a red and beige bleed week background
period apps turn your menstrual cycle into numbers. Image: Tina Tiller

InternetJuly 21, 2022

How period apps turn your body into data

period apps, caladeners, and a uterus on a red and beige bleed week background
period apps turn your menstrual cycle into numbers. Image: Tina Tiller

Tracking their menstrual cycles with an app is an ingrained, useful habit for millions around the world. But period apps are also a reminder of how intimate data about our bodies enters the domain of technology companies, says Shanti Mathias, reporting for IRL. 

All week we are examining our relationship with menstruation in Aotearoa. Read more Bleed Week content here.

Every day for the last seven years, Becky* has opened an app on her phone to log her symptoms. What mood is she in? Does she have a headache? If she has her period, how heavy is it? Her app of choice, Clue, registers this information, telling her when she might be ovulating and when her next period is due. 

Becky started tracking her period while living in Tibet and travelling a lot. “It was very difficult when you’re climbing a mountain or visiting a monastery in the middle of nowhere, and [your period] comes and you’re like, shit!” A friend recommended the app and “it saved my arse,”, she says. Over years of use, Clue has turned the rhythms of her body into numbers, coloured graphs and calendars telling her what is happening beneath her skin. 

Every month, millions of people join Becky in tracking their periods. The two leading apps, Flo and Clue, together have over 55 million users on Apple and Android, and there are dozens of others. Essentially, these apps all do the same thing: send reminders to log menstrual-cycle symptoms every day and use algorithms for calculating when your next period is due, if you might be fertile or if you might be pregnant.

At an individual level, the insights of period apps can be tremendously useful for understanding and communicating what is happening in your body. But like the hundreds of other digital technologies promising to optimise health, they’re still ultimately using the most intimate of data to turn a profit.

Period tracking apps are designed to be easily interpreted, with information about menstrual cycle length presented on tidy graphs. “I like the visualisation of the data,” says Jess*, another longtime app user. “It’s a good way to look back on what is happening with my cycle.” 

bryndyl hohmann-marriott stands in the sunshine smiling
Otago professor Bryndl Hohmann-Marriott has been researching period apps for years

The apps quantify and package individual experiences of menstruation in a way that is easy for others to see, says Bryndl Hohmann-Marriott, an associate professor of sociology at the University of Otago who has been studying period apps for the last five years. “People are hoping to understand themselves better based on data,” she says. “There’s an [idea] that technology can know us better than we know ourselves.” 

The nature of periods heightens this desire for understanding, Hohmann-Marriot says. The menstrual cycle is constant, but most of it is invisible: the silent accumulation of blood around the uterus, the release of an egg into the fallopian tubes, the flow of luteinizing and oestrogen hormones through blood. The period itself is the only part of the process that is external, but the graphs and statistics – how long is your cycle? What are the signs of ovulation? How does your period change your sleep? – make the invisible parts of the menstrual cycle visible. This information is particularly useful for communicating your cycle to others. 

“Personal data can be very helpful,” says Holly Thorpe, a professor at Waikato University’s school of health, who researches sport and gender, including period tracking for athletes. Thorpe says that athletes are very used to being tracked, with information about speed and strength and sleep – and periods – being used to calculate nutrition and design training programmes. For the athletes Thorpe works with, acknowledging menstruation as part of their body can help them excel. 

Holly thorpe, a smiling white woman, looks at the camera
Professor Holly Thorpe has studied how period apps are part of athletes training’, but how do athletes feel about this?

Period tracking apps can also help individuals seeking diagnosis of menstrual disorders, like polycystic ovary syndrome (PCOS) and endometriosis. “One thing that app users and medical professionals agreed on is that it is helpful to have a consistent record of cycle and symptoms,” Hohmann-Marriot says. Because the medical system is traditionally dismissive of menstrual pain, there can be an “appallingly” long wait for a diagnosis of disorders connected to period pain. 

All the app users I spoke to for this story had shown information from the apps to their doctors. “You get 15 minutes with a doctor and it’s hard to remember everything that’s been going on,” says Jess. “It’s useful to have a visualisation to back yourself up and help you remember,” she says, adding that she appreciated that the app gave her solid information on her irregular cycles. 

Period tracking also helped Julie*, who used an app to record pelvic pains, the cause of which was a mystery. “This information became critical when I finally spoke to a specialist and they put me forward for endometriosis surgery,” she says. “I still use the app to track my periods so that I know when to expect flare-ups.”

‘ bleedweek ’
Lyric Waiwiri-Smith
— Politics reporter

As period data continues to be used for accessing healthcare and improving sports performance, there is a downside, says Hohmann-Marriott. “Often doctors weren’t taking [patients] seriously if they didn’t have [period tracking] evidence,” she says. The period tracker prioritises quantification as a form of knowledge, treating symptoms with numbers attached as more valid than descriptions or experience without the proof of a graph on a phone. In making the invisible visible, period apps also imply that only certain kinds of self-knowledge are valid. 

The individual popularity of period apps is part of a broader neoliberal technology culture, Hohmann Marriot says. She notes that neoliberalism is the water “we all swim in” and period apps are neoliberal technologies that expect users to be neoliberal citizens who “monitor themselves and are responsible for keeping themselves healthy”. Keeping track of periods can help users look after their bodies, but it does so in a way that generates profit for others. It’s the same logic that helps explain widespread use of Fitbits and Apple Watches, Strava, Headspace, and many others: to care for your body, you need to make it legible to corporations with numbers, and purchase phones and other products to maintain that care. 

phone on a background of apps
Period apps are among the many other useful services on your phone that make money with your data

It’s not just self-monitoring, though: it’s also about what we expect technology to be able to achieve. “These apps are designed in westernised and scientised ways,” says researcher Thorpe. “There are different cultural ways to know your body, your menstruation.” But this wealth of other worldviews isn’t included in period tracking apps. Users are expected not just to be diligent, self-tracking citizens, ready to seek help if anything goes wrong with their bodies, but to also fit into western – often cisgender – ideas of who has periods in the first place. 

“Being non-binary and Māori, the app didn’t feel like it was for me at all,” says Whiro*, a user who tracked their periods for three years with app Flo before stopping. “It was very focused on pregnancy for cis women.” 

There’s an expectation that “there’s a technology answer for everything”, says Hohmann-Marriott. For instance, app Natural Cycles is an approved contraceptive in the US, Australia and Europe, but that doesn’t mean it’s always effective. Many Natural Cycles users have found themselves unexpectedly pregnant. In her research, Hohmann-Marriott has found that period apps “are very focused on people with normal cycles, they’re terrible for people with irregular cycles”. 

“Can the apps really give us the information we want about ourselves?” she asks. “In most cases, probably not.” An app might market itself as providing users with information about when they’re ovulating, which is vital information for those avoiding or seeking pregnancy. But the algorithmic prediction relies on users being able to accurately self-report the consistency of their cervical fluid, which isn’t straightforward. Apps may also use entered data to suggest that you have a menstrual disorder. “Nobody checks if it’s accurate,” Hohmann-Marriott says. 

If accuracy isn’t the goal, what is? “I wonder about this a lot,” says Hohmann-Marriott. “It’s very straightforward to make a period app with a basic predictive algorithm… None of these are developed with doctors or health consultants, they’re added later.” The goal is not better health outcomes for users, although apps may market themselves as such, and many users find their trackers do help their health. But for the developers of period apps, the goal is profit. 

a woman's face overwhelmed by apps
Photo: Getty Images

Apps are also monetised with advertising. Some apps also charge users a premium for access to better insights about their periods; Flo, the most popular period tracking app, is notorious for this. “It gave me articles about my cycle, but they were behind a paywall, so I would never read them,” says Whiro. “It seemed like it wasn’t very genuine – but I didn’t buy a subscription, so I don’t know.” 

But the heart of the period app business model is the sale of user data. Last year, Flo settled a massive court case that alleged it had informed Facebook of user activity in the app, such as indicating an intention to get pregnant. While many period apps say they protect user data, there are dozens of apps, and many user agreements have “loopholes big enough to drive a truck through”, Hohmann-Marriot says. “It’s so easy to get an app out there – the proliferation makes it easy for the bad ones to hide.” 

With the Dobbs ruling in the US meaning that people who get abortions can be prosecuted, some have recommended that period tracking apps should be deleted. Apps, eager not to lose users, have responded by creating “anonymous” modes. Users I spoke to were aware of the risks of generating this data, but found it difficult to imagine the consequences. 

“What are they going to do with it, really?” asked Jess. “I guess they could sell it to Facebook.” 

This is an attitude Hohmann-Marriot has seen often in her research. “People have so little control over what that data is used for, [even] if you read the user agreements,” she says. “It’s hard to think about, more than any individual can imagine.” Beyond the individual repercussions of for-profit corporations holding onto information about your body which you’ve diligently quantified for them, there’s the bleak reality that omnipresent technology asks everything to be profit. It’s not just your period tracker, after all: other health apps know how much exercise people get; social media apps draw links between friends and social groups; entertainment services gather information on what people are interested in seeing and learning; map and ride-share apps turn information about the location of your body onto a coordinate in a server.

Once you enter information about your body into your phone, where does it go? (Image: The Spinoff)

Whether you’re a user paying to get past a paywall to see information about your period, a tracking app company selling information to others, or data brokers compiling information from a range of digital companies to advertisers who want to target you so that they can make money, this is a technology system that has profit baked in at every level. The belief that everything is profit, including everything you know about your body, is a relatively recent phenomenon, and it’s hard to predict the long-term implications of living in a society that exchanges useful services for information about everyone. 

But while the big picture of monetised data is important, app users are glad that period tracking is helpful to them. As Becky has recovered from a chronic illness over the past year, keeping track of her periods has felt empowering. “We don’t know a lot of things about our own bodies,” says Becky. “Having a period app or a Fitbit takes [your] health into your own hands, saying ‘this is my body, I know my body’.” She’s fully aware that there’s a cost to the insights period tracking has given her, and she’s willing to live with the trade-off. “We live in a world where so much data is collected in so many ways,” she says. “I think the benefit outweighs the risk for me.”

As users like Becky continue to make use of period apps in an environment where individuals expect to sacrifice their collective privacy for useful technologies, Hohmann-Marriott will at least have “limitless” angles to research. After all, smartphones and the data questions that accompany them are here to stay – and so are periods.

*indicates that the interviewee wanted their last name withheld, or asked to use a pseudonym