Why Disabled and Indigenous Voices Must Lead Systems Change, Not Just Inform It
Ko te pae tawhiti whāia kia tata — pursuing distant horizons, even through the rain. Photo Credit: Rawa Karetai
When our son Hiwa-i-te-Rangi was born, some of the nurses told us we were the first family they’d seen where the father, my husband Frankie, a trans man, had carried the pregnancy.
We weren’t surprised. We were used to being “the first” or “the only” in almost every system we engaged with: maternity, parenting groups, housing, and education.
But what stood out wasn’t the lack of representation; it was the way we were treated as outsiders looking in, rather than as people with knowledge worth trusting. Despite our combined experience in law, policy, and public health, we were framed as “exceptions”, consulted occasionally, but never genuinely trusted to help shape the maternity system.
This story is personal. But it’s not unique.
The Problem with Inclusion Without Power
We’ve made progress in “diversity and inclusion.” Organisations consult more. Advisory groups are established. Lived experience is sought out.
We’ve made progress in “diversity and inclusion” despite some of the rollbacks of DEIB programs globally. Organisations are consulting more. Advisory groups are established. Lived experience is sought out.
But here’s the truth:
Too often, disabled, Indigenous, and Rainbow voices are invited to inform change, not to lead it.
The systems governing health, housing, education, and justice are designed from the centre out, shaped by those distant from the margins. People like me are often brought in after decisions have been made, asked to fill in the blanks, soften the edges, or retrospectively validate the strategy.
This is not co-design. This is tokenism masquerading as consultation.
And it doesn’t work.
What Leadership from the Margins Looks Like
Leadership from the margins is not just about representation. It’s about the redistribution of power and embedding equity into decision-making authority.
Disabled, Māori, and takatāpui people:
Understand intersectionality in our bones, we’ve lived it.
See systems horizontally and holistically, because survival has required it.
Know how to balance whānau and whakapapa, law and tikanga, data and lived truth, not as opposites, but as partners.
Where We Are Already Leading
The shift is happening, and it’s working.
In health: As National Manager of Disabled People’s Health, Hospitals and Specialist Services at Te Whatu Ora, I work with a national network embedding equity into planning, funding, and operational decisions. This includes implementing the Disability Capability Framework, influencing inclusive commissioning strategy, and ensuring culturally safe pathways in hospital care.
In governance: Disabled and Indigenous leaders are taking up key board roles, from ILGA Oceania to Te Pūawaitanga ki Ōtautahi Trust, where decision-making power, not just advice, rests with those most affected.
In national initiatives: We’re leading technical advisory groups for perinatal bereavement, maternity care, and air ambulance equity, ensuring that change is designed with lived expertise from the outset.
In international advocacy: From UNDP and WHO engagements to delivering keynote addresses at global forums, our voices are shaping human rights conversations beyond Aotearoa.
In public narrative change: Through the Trans and Pregnant documentary, we’ve challenged societal norms and reshaped discourse on gender, disability, and reproductive justice, reaching audiences in living rooms and policy rooms alike.
These aren’t symbolic contributions. They are structural, shifting how systems fund, measure, and deliver.
Resolution: A New Model for Change
So, what now?
Here’s the approach I believe in, and practise:
Lead with lived experience. Build teams and boards that centre those most impacted by inequity, not as advisors, but as decision-makers.
Build systems with cultural fluency. Design for whānau, not just for units of service delivery. Honour Indigenous models of health, wellbeing, and accountability.
Make equity a systems principle, not a pilot project. Embed inclusive design into procurement, funding, governance, and data collection.
Back the margins with money. Fund community leadership, research, innovation, and evaluation in a way that sustains long-term transformation, not one-off reports.
We don’t just want a seat at the table. We want to rebuild the table, with legs strong enough to hold the weight of everyone’s future.
If we want systems that work for all, we must stop treating disabled, Indigenous, and Rainbow people as exceptions.
We are not “edge cases.” We are the architects of the future, and the future is already under construction.
🔗 Follow me for more reflections on systems change, equity leadership, and human rights diplomacy. 🖤 Ko te pae tawhiti whāia kia tata. Ko te pae tata whakamaua kia tīna. | Seek out the distant horizons so they may become close. Hold fast to the close horizons so they may be secured.