Karanga rua, karanga maha: Māori with lived experience of disability self-determining their own identities

ABSTRACT

For Indigenous Māori in Aotearoa New Zealand, the impact of disability can be pervasive yet often invisible due to considerable gaps in the accuracy and interpretations of disability data and information for Māori. We present findings from a kaupapa Māori qualitative study that centres perspectives of Māori with lived experience of disability, exploring how they define and negotiate their identities within the context of health and wellbeing. Our findings emphasise how Western-centric constructs of ‘disability’ and related terms fail to align with te ao Māori perspectives. We discuss the notion of ‘karanga rua, karanga maha’ as a potential framework to understand how Māori with lived experience of disability conceptualise and express a plurality of identities within Māori collectives. Māori ways of being, knowing, relating and doing are vital to advancing understanding of the impacts of disability to address priorities and aspirations of Māori with lived experience of disability. There is a critical need for national level dialogue led by, with, and for Māori with lived experience of disability to define their collective identity, (re)claiming their own mātauranga and ways of knowing, in concert with recognition and acknowledgement of their tāngata whenua rights to full expression of tino rangatiratanga in their health and wellbeing.

Glossary of Māori terms: aroha: love, compassion, empathy; hapū: kinship group, sub-tribe, sub-nation, to be pregnant; iwi: extended kinship group, tribe, nation, people, bone; ira: life principle; kaitiakitanga: guardianship; kanohi ki te kanohi: face-to-face; kapa haka: traditional Māori performing group; kāpō Māori: Māori with visual impairment, who are blind or deafblind; karanga: call or chant; karanga maha: person related through more than two lines of decent; karanga rua: someone related through two different lines, standing in a double relationship; ‘karanga rua, karanga maha’: a proposed framework for conceptualising Māori Disability identity - in reference to the integrated plurality of a person having two (rua) or many (maha) callings or intersectionally relational elements; kaumatua: elders; kaupapa Māori: Māori agenda, Māori principles, Māori ideology - a philosophical doctrine, incorporating the knowledge, skills, attitudes and values of Māori society; koro: elderly man, grandfather, term of address to an older man; kuia: elderly woman, grandmother, female elder; mana: spiritually sanctioned or endorsed influence, power and authority; manuhiri: visitor, guest; Māori: Indigenous Peoples of New Zealand; marae: courtyard, the open area in front of the wharenui, where formal greetings and discussions take place. Also used to include the complex of buildings; mātauranga: knowledge, wisdom; māuiui: illness, disorder; moemoeā: to have a dream, have a vision; ngāti Turi: Māori Deaf; Pākehā: foreign, New Zealander of European descent; Papatūānuku: Earth Mother; pēpi: baby, infant; rangatahi: younger generation; rangatira: chief/chieftainess; rohe: boundary, territory; rongoā: medicine, remedy; tamariki: children; tāngata: people; tāngata Turi: Māori Deaf; tāngata whaikaha: an empowering umbrella term used to encompass people (of all ethnicities) with lived experience of disability (literally: people striving for enablement); tāngata whaikaha Māori: an empowering umbrella term used to encompass Māori people with lived experience of disability (literally: people striving for enablement); tāngata whenua: people born of the land - of the placenta and of the land where the people's ancestors have lived and where their placenta are buried; tapu: sacred; te ao Māori: the Māori world; te ao Pākehā: the Pākehā (foreign) world; te ao tawhito: the ancient world; te reo Māori: the Māori language; Te Tiriti o Waitangi: the Māori version of the Treaty of Waitangi; forms the foundation of the contractual relationship between two internationally recognised sovereign nations – Māori, as tāngata whenua (people of the land), and the British Crown; tino rangatiratanga: absolute sovereignty, self-determination; tūrangawaewae: standing, place where one has the right to stand; tikanga Māori: customary system of values and practices developed over time and deeply embedded in the social context; tīpuna/tupuna: ancestors; wairua: spirit, soul; wānanga: to meet, discuss, deliberate, consider; Whaikaha: Te Reo Māori name of the Ministry of Disabled People; whakamā: to be ashamed, shy, bashful, embarrassed; whakapapa: ancestry, genealogy, familial relationships; whanau: to be born, extended family, family group; whānau hauā: a name for Māori with lived experience of disability; wharekai: dining hall; wharenui: meeting house, large house; whenua: placenta, ground, land.

KEYWORDS:

• Māori
• Indigenous peoples
• disability
• identity
• intersectionality
• equity

Introduction

For Indigenous Māori in Aotearoa New Zealand (NZ) concepts of ‘disability’ have previously, and continue to be, expressed in diverse and evolving ways. The rich oral histories, pre-colonisation, of Māori perspectives of human diversity in te ao tawhito (the ancient Māori world) demonstrate that ‘Māori in the ancient world who had impairment were people with god-like power and god-like status’ (Tikao et al. 2009, p. 11). Moreover, people ‘were known for the talents that they possessed, not for what they didn't have’ (Tikao et al. 2009, p. 11). For example, Māori societal perceptions of people with blindness have found within te ao Māori (the Māori world) cosmologies, to be blind (kāpō Māori) was not considered a ‘disability’ but rather a tohu (sign) of high eminence.

In the early 1800s with the influx of English and colonial influences, Māori as tāngata whenua (Indigenous peoples), formed a unique partnership relationship with the British Crown (the Crown) under Te Tiriti o Waitangi (Māori version of the Treaty of Waitangi). This foundational relationship outlined the Crown's obligations and responsibilities to provide governance over British subjects in NZ whilst Māori retained sovereignty over Māori (Jackson 1985). Under Te Tiriti o Waitangi, Māori also retained rights to maintain their own tikanga (protocols) and mātauranga Māori (Māori knowledge), and the Crown assumed obligations to ensure it applies Te Tiriti o Waitangi to all its work. This obligation included an inherent requirement to act to eliminate inequities between Māori and the colonists (Tribunal 2019).

Yet, due to multiple breaches of Te Tiriti o Waitangi, Māori rights of sovereignty were not upheld and Māori world views were supressed (Tribunal 2019). Consequently, Māori experience inequitable health and wellbeing outcomes, perpetuated through colonisation, coloniality and racism (Jones et al. 2020; Reid et al. 2022). Internationally, disability is widely acknowledged to be both the cause and consequence of inequities in health, social and economic outcomes (World Health Organization and The World Bank 2011), and therefore, a direct association can be drawn between disability and breaches of Te Tiriti o Waitangi.

In NZ, such breaches of Te Tiriti o Waitangi are often the result of acts of omission, or failures to act in the face of need (King 2019; Tribunal 2019). The true impacts of the resulting inequities are likely underreported in official data and government responses both because of the inadequacies and quality of current data (for example, the prevalence for Māori is likely to be underestimated due to underreporting of both ethnicity and disability), and the significant gaps in what is collected in official disability data for Māori (King 2019; Jones et al. 2020; Waitangi Tribunal 2021). This ‘invisibilisation’, or failure to include Māori information and perspectives arises from the exclusion of te ao Māori from Western-centric concepts of ‘disability’, ‘impairment’ and ‘illness’, and the socio-cultural contexts within which Māori live (Hickey and Wilson 2017; Ingham et al. 2022a).

From an Indigenous perspective, the term ‘disability’ has been designated a symbol of colonialism ‘with its ableist implication that disability is inherently undesirable’ (Jaffee and John 2018, p. 1425). In addition, by claiming the status of ‘normal’, the Global North renders Indigenous Peoples ‘abnormal’, thereby using the concept of disability as a colonising tool (Henderson 2000; Connell 2011; Hollinsworth 2013). This highlights the insidious and pervasive impacts of colonisation on Indigenous Peoples and other social groups who experience marginalisation under oppressive political, social, economic and environmental conditions (Jaffee and John 2018; Erevelles 2019; Ineese-Nash 2020).

Western approaches to disability have largely considered the concepts of ‘disability’ and ‘impairment’ from a deficit perspective. The array of conceptual disability models originating from the Global North over time, such as the ‘Charity’, ‘Medical’ and ‘Rehabilitation’ models (as described in Table 1) represent both historical and prevailing ideologies informing approaches of broader society towards people with lived experience of disability. They reflect those attitudinal, political, social, cultural and economic factors which have, historically and in contemporary times, defined approaches by government and society toward disability in NZ (Nikora et al. 2004; Hickey 2008; King 2019).

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) defines ‘disability’ as resulting from the ‘interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’, situating ‘disability’ as a function of society rather than attributes of the individual (United Nations 2006). The World Health Organization (WHO) tends to predominantly focus on the concept of ‘impairment’ and impairment-related disability. In the WHO's model of disability, outlined in the ‘International Classification of Functioning, Disability and Health’ (ICF), ‘impairment’ is described as any loss or abnormality of psychological, physiological, or function, and ‘disability’ to be any restriction or lack of ability to perform an activity, or to participate in the manner or within the range considered normal for a human being (WHO 2001). While the UN definition uses a rights-based model with its characteristic ‘person-first’ language, the WHO model, while also interactional, is grounded in a Functional Limitations Model. Therefore, while the model includes assessment of the contribution of environmental factors, this is only in respect of how that might augment or mitigate the individual's inherent limitation and consequently ability to participate. Despite both definitions recognising, to some extent, the contribution of exogenous factors to disablement, neither fully remove a focus from the implicit role of the individual's impairment, and certainly, neither definition have been based on, or explicitly include, Indigenous worldviews or perspectives (King 2019).

Existing challenges relate to dominance of the Global North, the persistent colonial hegemony (Grosfoguel 2006), and resultant imposition of Western knowledge upon Indigenous Peoples, evidenced by the notion of individual paramountcy that underpins disability policy, practice and research (Hickey 2006, 2008, 2020; Hickey and Wilson 2017; King 2019). Models from the Global North frame disability within an individual context, a stark contrast to the role that collectivism and interdependence have on Māori health and wellbeing.

The models of disability emanating from the Global North do demonstrate a chronological evolution from paternalistic, discriminatory and individualised deficit-based approaches to the social model of disability (which considers disability a result of society's failure to meet the aspirations and needs of people) to civil-rights based approaches (Gabel and Peters 2004). Although a number of these historic models may no longer be considered best practice, many elements of them continue to exist entrenched in structural and policy areas in modern society, and the NZ health and social sectors. Furthermore, aspects of these models remain reflected in prevailing societal attitudes and behaviours and are thus internalised into the individual and collective identities of people with lived experience of disability (Ingham et al. 2022a).

The existing body of disability knowledge in NZ is primarily shaped without the perspectives of Māori with lived experience of disability, their whānau and communities (Ingham et al. 2022b). Considering that they experience the highest level of cultural, social and economic deprivation in NZ (Statistics New Zealand 2015; King 2019), an examination of predominant concepts of disability is essential. Even within te ao Māori, and between communities, perspectives on disability and disablement occur (Hickey and Wilson 2017; Hickey 2020). For instance, contemporary NZ has seen the emergence of Māori Deaf constructing a distinctive identity with terms such as ‘tāngata Turi’ or ‘ngāti Turi’ expressed through new forms of self-representation and cultural activity, reclaiming a right to their tūrangawaewae (a place where one has the right to stand) within NZ (Smiler and McKee 2007). Hence, exploration regarding how Māori choose to identify or describe themselves, and from their own perspectives, is paramount.

We present findings from a qualitative study that explore the perspectives of Māori who self-identify as having lived experience of disability in relation to concepts of ‘disability’, ‘impairment’ and ‘illness’. In undertaking this research, we were interested in understanding how Māori are defining and negotiating their identities, and the implications for health and disability policy and service-design to ensure diverse social identities are included in the achievement of health equity for Māori. We use the term ‘Māori’ as a construct to describe the Indigenous Peoples of NZ, recognising that Māori are a collective that encompass numerous diverse and autonomous nations with differing cosmogonies, genealogies, histories and lived realities. We also use the phrase ‘Māori with lived experience of disability’ whilst acknowledging that Māori may use a range of other terms (King 2019).

Methods

Our research is situated within a Kaupapa Māori Research (KMR) paradigm (Smith 2021), and uses the ‘Whānau Tuatahi Framework’, consisting of qualitative research methods and principles developed by Māori scholars (Jones et al. 2010) to explore and centre the perspectives and lived experiences of Māori with regard to wellbeing and the ways in which Māori refer to disability, impairment and illness. The research was conducted within the context of a broader study that aims to develop culturally safe approaches to measuring disability in Māori and quantify the prevalence of ‘disability’ and health, social, and economic impacts of disability for Māori in NZ (Ingham et al. 2022a). Ethical approval was granted by the Southern Health and Disability Ethics Committee (Reference: 19/STH/153).

In practical terms, the ‘Whānau Tuatahi’ concepts that were applied to all processes of this research are: whakawhirinaki (trust), whakawhanaungatanga (building relationships), whakamana (empowerment), ngāwari (flexibility), utu (reciprocity) and hurihuringa (reflexivity) (Jones et al. 2010). These concepts informed our interview structures, guided questions, interpretations and analysis. Interviews were held either kanohi ki te kanohi (face-to-face) wherever possible (whakawhanaungatanga), or via use of other modalities where participants preferred, for instance, internet video/audioconferencing platforms or telephone (ngāwari). Interviews generally took between 30 and 120 minutes and were audio-recorded with informed consent and transcribed verbatim. Participants were given broad scope to lead the pace and flow of the interview, to canvas the issues of primary importance to them, and to have their concerns and interests discussed (whakamana/utu). The interviewers all identified as Māori and had good grounding in tikanga Māori with one interviewer being fluent in te reo Māori and another with lived experience of disability. All had whānau connections and experiences with disability (whakawhirinaki/whakawhanaungatanga). Most interviews were conducted in the English language, although participants used te reo Māori at times. For two interviews, te reo Māori was used for sustained periods throughout. One interview was conducted in New Zealand Sign Language (NZSL) with the assistance of an NZSL interpreter (whakamana/ngāwari). Participants were provided with a koha in recognition of their contribution (utu).

Interviews followed a semi-structured interview schedule developed by the research team. Participants were encouraged to describe their identity and the impact of disability, impairment and illness, in their own words. There were also prompts used in interviews to encourage participants to share their perspectives on the impacts of disability, impairment and illness on their own lives, and those of their whānau.

The interview transcripts were coded by the Māori researchers who conducted the interviews, with the data coding peer-reviewed by two other members of the research team. All participants had the opportunity to review their transcripts before analysis (hurihuringa). The initial and then finalised themes were generated via a series of wānanga with the wider research team and using an intersectional analysis deriving from the knowledge and social justice projects of feminist activities and scholars from Black, Indigenous, Asian American, Indo Canadian, Chicanx and Latinix communities (King 1988; Crenshaw 1991; Carbado et al. 2013; Collins 2015; Hancock 2016). Intersectionality can be considered a fundamentally political orientation that is ‘shaped by multiple, complex, intersecting, and interdependent systems, structures, and axes of power, privilege and oppression’ (Jones et al. 2020, p. 72). Intersectionality thus provides an important tool for analysing how multiple axes and forms of societal power, privilege and oppression simultaneously impact on Māori with lived experience of disability enmeshed within this contextual matrix, and reciprocally how those same axes may shape and define identity. Hence our analysis involved a critical interpretation of the data contextually situated across multiple levels and within multiple spaces (Stienstra and Nyerere 2016).

Results

Twenty-one in-depth individual and whānau interviews were conducted with a total of 27 participants. In all cases, we sought to interview Māori who self-identified as having lived experience of disability, impairment and illness. In most cases, people chose to be interviewed alone, but in three instances, interviews included whānau members. In one of these, the person who self-identified as having lived experience of disability was unwell and unable to attend the interview. In this instance, whānau members participated in the interview in their place. Another interview involved a whānau member who self-identified as having tamariki Māori with lived experience of disability and/or impairment and/or illness. All but one participant was Māori, and in that case, they were a close whānau member of a Māori participant who self-identified as having lived experience of disability and/or impairment and/or illness.

Approximately half the participants self-identified as female and half self-identified as male, with one participant self-identifying as ‘other’ gender. The age range of participants was between 25 and 69 years of age. Participants came from different hapū and iwi from across NZ, and lived in a variety of locations, with a mix of living in cities, provincial towns and rural areas.

The following sections outline the four overarching themes: (1) There is no universal term to describe disability for Māori; (2) Identity is primarily linked to te ao Māori; (3) Disability may or may not be relevant to one's identity; and (4) Barriers to accessing te ao Māori leads to disconnection. In keeping with our focus on holistic wellbeing, participant quotes are assigned pseudonyms belonging to plants often utilised for Māori health and wellbeing (rongoā Māori).

Theme one: there is no universal term to describe disability for Māori

Participants highlighted the term ‘disability’ and related contemporaneous concepts did not necessarily exist in te ao tawhito, rather people with lived experience of disability were considered special or gifted:

Before colonisation there was no term … we were all one. Everything went through our chief and our kaumatuas and kuias. Nothing defined us into one category. (Makomako)

I think and when I’ve heard some kaumātua talk to me and said that there was no such thing as disability. One kaumātua told me that disability is, his rohe was on an island, that how he remembers being carried up the beach in a wheelbarrow because that was just how his whānau did it. But there was nothing's said about it. Then others refer to disability as tapu and almost being closer to god, having a sort of a unique perspective on the world. (Kumarahou)

We have a rangatira who fought in the, was it the hou, with the muskets, and he was from [name of hapū]  …  They were friends, but for this particular issue they were fighting with muskets and he got shot, and he got blinded in one eye, and it's always been sort of like a family sense of pride that he was blinded. He's our rangatira from our hapū. (Kawakawa)

Some participants used terms such as ‘disability’, ‘impairment’, ‘tāngata whaikaha’, ‘whānau hauā’ and ‘māuiui’ whilst other participants identified with a particular impairment type, rather than with the term ‘disability’. There was no universal term that was used to describe disability for Māori:

We accept people for who they are, so it doesn't need a word eh? (Ponga)

I just call it epilepsy, to be honest. ‘I’ve got epilepsy.’ That's what I say, or seizures. (Toetoe)

I’ve just been an amputee more or less. (Manuka)

Theme two: identity is primarily linked to te ao māori

Participants felt the need to make a distinction between being Māori and their lived experience of disability. Being Māori first and foremost was considered the ‘norm’. Disability was thus a secondary consideration when it came to identity:

I’m first and foremost a Māori. Having a disability is just part of who I am. (Makomako)

I have never not felt I was Māori  …  I think my Māori is what I have always identified with really strongly rather than a disability. (Nikau)

I’d class myself as Māori, just been brought up that way and so don’t know anything else. (Kowhai)

Participants highlighted how their Māori identity was primarily linked to their whakapapa, whenua, their tīpuna and whānau, and other aspects of te ao Māori. Even limited knowledge around whakapapa did not interrupt participants’ sense of being Māori. Filling this gap in their whakapapa knowledge, however, was considered critically important. Participants highlighted the reliance on whānau members who carried the knowledge of whakapapa. The loss of these whānau members meant that whakapapa remained at least partially unknown:

I think it's a little difficult  …  In my whānau my only uncle who knew our whakapapa and who was fluent in the reo and knew the tikanga, died before passing it on. So, none of our whānau really know our full whakapapa. (Kumarahou)

In addition to whakapapa, participants referred to whenua as a source of their identity:

I feel very strong in my identity when I’m on my whenua somewhere. I feel very different when I was in Hastings. No link there. I felt like manuhiri in Hastings. So, really connected to the land. (Nikau)

Marae were also described as places that helped strengthen identity. The importance of visiting marae was highlighted by participants. Sometimes marae were discussed as places where participants often spent time, other times marae were discussed as a place that participants aspired to visit:

It’s when I go back to my marae, they teach me who's who and how does that fit with me, like the background. (Koromiko)

Participants additionally described marae as a place of shared connectivity where everyone has the opportunity to contribute in different ways, and where all contributions are valued:

Because it wasn't always a physical thing you have to do in order to contribute. It was finding your skill, your talents, and definitely that's something that my own immediate whānau, when I think about our hapū with my marae, and that kind of wider sense of whānau. That's how we still view, when we go home all together, and as long as everyone's got a way of contributing then. (Kawakawa)

It was acknowledged that te ao Māori world perspectives and knowledge of whakapapa also created conditions of better acceptance from other Māori who did not live with disability:

The other thing, which is going to be part of my whakapapa, apart from my Māori lineage is also my blindness, which what I know is that I’m third generation  …  And so, what I’ve discovered is for me to feel comfortable about that I need to acknowledge it. Then when my children have grandchildren, they’re going to be talking about things, things that are going to be included into their whakapapa as Māori, disability, and me being in the state system. (Rata)

The differences between te ao Māori and te ao Pākehā around value placed on Māori with lived experience of disability were noted by participants:

I guess an identity difference is from a Pākehā viewpoint you feel like a drag, or it's something like that others have or feel an obligation to support you rather, than in te ao Māori where it's a privilege to give. (Kumarahou)

Participants specifically addressed the value that te ao Māori places on Māori with lived experience of disability. A person living with disability was perceived as having an elevated status:

There is an underpinning acceptance that people are born with this innate uniqueness that is going to give us as a whānau something amazing; that we just have to sort of wait and see what that will be. I think that comes from our views that children have these unique characteristics, and we emphasize their strengths and we support them to reach their possible outcomes, and I think disability  …  is just part and parcel of that person, but doesn't define what an amazing contribution they will have. (Kawakawa)

Theme three: disability may or may not be relevant to one's identity

All participants had a strong sense of defining themselves primarily as Māori, with concepts of disability being secondary (if relevant at all) to their sense of identity.

When I talk about disability, I don't think we actually need to use the word ‘disability’ in this; I think we’re all people, we are all tāngata. Everybody's got their limitations and have to confront barriers that are put up whether economic, whether housing, whether health, wellbeing and all that sort of stuff. (Rewarewa)

I don't see myself as having a disability until it's obvious; going across grass then of course I’m like, ‘oh man, I’ve got to muddy up my wheels’ but apart from that I don't see myself as having a disability. (Titoki)

The concept of ‘disability’ for some participants was linked to them physically but was separate from their sense of who they were:

Disability is something that has happened to me and that I must sort of bear and deal with. To me identity is about who you are and who you are not  …  I don't consider  …  Like, if I stub my toe or I graze my knee that doesn't become part of my identity  …  I didn't grow up with a stick or a frame or a crutch or a wheelchair. So, I see this as something that is separate from my personal āhua. It's different from my wairua, it's something that may exist in the physicality. (Kumarahou)

Participants also highlighted the way that ‘disability’ as a concept has been used by Pākehā to compartmentalise a person and their (health and disability) needs, in a way that conflicts with Māori understandings of hauora and wellbeing:

Having a disability doesn't define who I am. From a Western worldview they try and categorise us. They put us in that one box and go, ‘You’re disabled.’ But from a te ao Māori perspective it's who we are, and we walk with that journey, and we continue to embrace our te ao Māori. (Rata)

It's about me. I’m living it. It's not about the ‘externals’ that think that they are it. It's about me, the ira. The ira tangata. The ira wairua. (Totara)

However, despite Māori preferences, ongoing experiences of racism and colonisation meant several participants highlighted the adaptation to Western cultural norms and adoption of Western terms in order to survive. For some this meant engaging with a Western world perspective while holding on to te ao Māori:

I use the word disability a lot because it's a word that ableists can relate to. I’m not ashamed of it. I promote disability by being disabled, I’m proud of what I have achieved [despite] my disabilities, but it's a word that people know. (Piripiri)

For others, being associated with the term ‘disability’ was driven by a perceived requirement to identify in a particular Pākehā way in order to be acknowledged, and/or to have access to disability support services:

I think that it was all seen as a very, oversimplified, like for me it's not about, you’re either Māori or you’re not. You’re either disabled or you’re not. Because it's actually, there was a bit of a period of time where I wanted to reject my Māori, because I could see that the Pākehā were packaged up really well. They were getting more  …  I always think that it's such a pity that you have to have a label put on you before you can access anything. (Rata)

Conversely, several participants described their lived experience of disability as being ‘invisible’ to others:

A lot of people don't know that I’ve got epilepsy. It's not something I tell people, is that weird? My son's in here and he's like, ‘I know it.’ I don't disclose that information unless it comes up in a conversation. (Toetoe)

The lack of ‘visibility’ was considered as contributing to a lack of support or acknowledgement of the impacts of disability, and impacted their sense of identity:

I think because my disability is hidden as well, it's not a visual, then you may learn to know that I have a disability, but because I am quite able, and you can't see it it's easily forgotten by people around you. So that you tend to not acknowledge it either. (Rimurapa)

A lot of people do not understand, or do not believe in ADHD [Attention Deficit Hyperactivity Disorder] at all. No-one does, even the bloody doctors are useless man; even the psychiatrist. (Rimuroa)

For tāngata Turi, the impacts of not being recognised, resourced or counted, over time was raised as an issue that was intergenerational:

I think New Zealand wasn't good enough really providing resources to Māori Deaf children  …  Older Māori Deaf people, where is the information about them? Where did they go to school? What happened to those kids? (Kiekie)

Theme four: barriers to accessing te ao Māori leads to disconnection

Specific areas of disconnection between te ao Māori and disability were shared by the participants. Being disconnected from te ao Māori was considered to negatively impact a person with lived experience of disability and that in some cases disability (secondary to the way society and power is organised) amplified these disconnections. Although some participants were fluent in te reo Māori and switched between te reo Māori and English effortlessly in interviews, many participants acknowledged their lack of te reo Māori. This sometimes led to participants expressing feelings of insecurity around their Māori identity:

I do embrace what I can of te ao Māori. I still feel a fraud by not having the reo and the tikanga and you do what you can. (Kumarahou)

One participant specifically noted that disability, combined with limited connection to whānau Māori, meant that learning te reo Māori was difficult:

I find it challenging because I’ve got a learning disability. I’ve tried to go to courses that teach you Māori, but I haven't been able to really understand it completely. (Koromiko)

For many participants, disability created barriers to accessing and engaging with their connections to their lands:

For Māori, the whenua is a huge part of everything. You know, Papatūānuku is it. I think in being disabled has hindered me from having full identity, or down to that river, or right up that maunga, or down by the ocean  …  I watch some of our rangatahi, and they’re out in the weekends, and they’re diving, and it's really cool, which has also hindered my children, and their children, because we haven't done those things, because I can't physically do it. (Manuka)

Other participants talked about the limited access to marae and the impact it has on them in terms of feeling excluded:

My wife's main marae is fully accessible, well in the wharekai at least. Wharenui isn't but that's a flood area, so they build things up on, you know, big steps and foundations. That's when you notice you’re different again. (Kumarahou)

Another participant talked about how feeling whakamā and not feeling acknowledged or accepted meant they did not feel comfortable engaging in kapa haka and visiting marae:

I had done kapa haka, I had no problems  …  I don't recall what made that shift, but I recall I would have been about 12 years old and that really impacted on how I started to view myself, physically, and that pulled me away from kapa haka. Or going to a marae, where you know you’ve got to take your shoes and socks off, so I would not want to go. (Rimurapa)

Closed adoption of pēpi Māori had a significant effect on their identity and lack of cultural connection. Some participants talked about barriers to accessing te ao Māori, secondary to closed adoption:

It was a privilege to learn because my dad's mum was adopted out. I tried chasing that, and it sort of went nowhere and they said, ‘No, get lost lady’. I continued and got my cousins involved; and so, yeah, we found out who our kuia was on my dad's side, because dad never met his grandparents sort of thing. It was a real privilege to realise [where we are from]. (Manuka)

The loss of the connections to te ao Māori was highlighted as being compounded by racism and ableism:

For me as tāngata whaikaha Māori, I need to connect firstly as Māori as well as tāngata whaikaha. My disablement is dual in the sense that  …  I can feel inadequate in the sense of not being Māori enough, as well as being disabled. I guess that's having had a sort of a more of a Pākehā upbringing and not having the whakapapa links so clear. That makes it challenging for me. (Kumarahou)

Discussion

Participants in this study articulated their perspectives on dimensions of holistic health and wellbeing that Western concepts of ‘disability’, ‘impairment’ and ‘illness’ fail to adequately take into consideration. The statement, ‘I’m first and foremost Māori, having a disability is just part of who I am’ provides a summary of the shared sentiments of participants and synthesises the paradigm challenges associated with understanding both Māori disability identity, and the impacts of disability and disablement for Māori.

Western concepts of disability were universally perceived negatively or with cynicism by participants, and there was a resistance to being labelled using non-Māori terms (‘from a Western worldview they try and categorise us’.). The term ‘disability’ itself was reiterated by some participants to reflect a colonial tool of oppression. Velarde’s (2018) research in NZ, Australia and Mexico around concepts of disability for Indigenous Peoples also reported that ‘distancing from the term disability was acutely expressed  …  they interpreted disability as a Western construct and a current manifestation of ongoing colonisation, if they were to comply with it’ (p. 5−6). Some of the participants in our study considered their sense of who they were as transcending concepts of ‘disability’. Velarde (2018) has also observed that Indigenous Peoples with lived experience of disability reflected the perception that ‘individuals’ bodies, minds and spirits are part of a continuum which goes beyond their temporal existence’ (p. 7).

In contrast to historical Western deficit constructs around disability, impairment and illness and even the more recent social model of disability, te ao Māori concepts (such as whakapapa) were stressed as upholding the inherent value of Māori members of whānau, hapū, iwi and communities. This also aligns with the collectivist nature of te ao Māori where participants highly value whakapapa links and maintaining their connections and kinship relationships.

Bevan-Brown's research (2013) has highlighted how concepts of disability for Māori are interwoven with other Māori values and beliefs that uphold the mana of people with lived experience of disability. For instance, Māori values mean that pēpi, tamariki and rangatahi Māori with lived experience of disability are considered to be special and precious taonga, with Māori values of aroha, kaitiakitanga and wairuatanga ordaining a responsibility to look after and care for them (Bevan-Brown 2013). Some participants highlighted whakapapa events within their Hapū and Iwi that demonstrated how disability and impairment was perceived by tīpuna within te ao tawhito, for instance, having an impairment was considered by some to be a badge of honour or by others to be associated with special talents. These findings align with research by Tikao et al. (2009) that reported blindness was perceived to be a sign of esteem in te ao tawhito.

Māori Indigenous identity

Identity for participants in this study was strongly grounded within te ao Māori with lesser and more varied identity adoption of disability. Māori ways of being, knowing, relating and doing were considered a source of pride, and participant connections to te ao Māori a source of strength for self-defining who they were.

Hickey (2020) observes that Māori do not see disability as a social or political identity but rather as a natural consequence of living. This appears to have similarities to other Indigenous Peoples with disabilities who do not define themselves through their impairment but through their Indigenous identity (p. 83)

Velarde (2018) found that a strong grounding in Indigenous identity was of primary importance and was ‘associated with all aspects of peoples’ lives, including living with impairment. Nevertheless, little or no recognition was given to disability/impairment playing a role in defining their identities’ (p. 7).

From a Māori worldview, the concept of whakapapa (genealogy) is often seen as the determining factor of Māori identity (Greaves et al. 2023) As Greaves et al. (2023) notes, however, whakapapa is more than ancestral relations alone, it is the broader layering of genealogies, histories, values, tūpuna (ancestors), pūrākau (stories, myths) and mātauranga (experiences and knowledges) that collectively intertwines the social fabric of te ao Māori. Greaves et al. (2023) further reinforces the fact that ‘Māori ethnic identification is temporally and socially located – and able to change across a range of contexts’ (Greaves et al. 2023, p. 168).

Cultural connection

A strong sense of cultural identity has been shown to protect people from marginalised groups against the impacts of discrimination (Greaves et al. 2023). Being disconnected from te ao Māori was considered to negatively impact on participants in this research, with disability acknowledged to have amplified the disconnections from te ao Māori and in some cases affected participants’ ability to be part of the whānau, hapū or iwi collectives.

Velarde (2018) note that health and wellbeing is reliant on whether Indigenous Peoples are in balance with their whānau, spirituality, communities and ancestral lands. For the participants in this research, health and wellbeing were aligned with access to te ao Māori, however, for many, in addition to colonisation, coloniality and racism, disability impacted considerably on this access. Hickey (2020) provides further reflection with regard to the impacts of disconnection, observing how Indigenous Peoples who identify:

more strongly as persons with disabilities than as Indigenous Peoples do so because of their disconnection from their families and cultural communities. Those with disabilities who were removed and institutionalised in infancy or at birth, appear to have a greater disconnection with their whānau links than those who were raised with their whānau and within their cultural communities. (p. 83−84)

For Māori in NZ an experience of disablement is, at least in part, mediated via exclusion by a society that ignores te ao Māori, and ‘takes no account of their culture, identity or the meanings that Māori themselves give to disability’ (Higgins et al. 2013, p. 813) further marginalising them from access to their own language and culture. To some extent, this may be argued to be a somewhat universal experience for Māori and Indigenous Peoples worldwide who as entire populations have diverse historical and contemporary impacts of disablement arising from colonisation, coloniality and racism that are in themselves disabling (Connell 2011; Meekosha 2011; Hollinsworth 2013; Soldatic 2015; Hickey and Wilson 2017; Jaffee and John 2018; Hickey 2020).

Intersectionality

Our findings also highlight that these Western concepts of disability fail to consider the intersectional disabling impacts of being disconnected from whakapapa, te reo Māori, tikanga and mātauranga Māori, and inability to access traditional lands, waters or marae. Additionally, while Māori with lived experience of disability may benefit from being ‘visible’ to disability services, they may choose not to identify so as to avoid strong negative attitudes attached to the label ‘disability’ (Nikora et al. 2004). While it appears Māori with lived experience of disability generally do not want to take on a deficit or Western-centric identity, some participants recognised they needed to accept the label ‘disabled’ so they could access the services they require. In this way, the imposition of Western concepts is at odds with rights of Māori under Te Tiriti o Waitangi to be self-determining and to exercise control over their own identities. Furthermore, the imposition of inadequate Western concepts of disability and lack of recognition of Māori ways of being, knowing, relating and doing likely contributes to inequities in access to disability support entitlements. In parallel, even within te ao Māori cultural paradigms, Māori with lived experience of disability can struggle to find place and voice. In a culture that promotes inclusivity and does not emphasise the issues which define the unique points of identity that lived experience bring, it can be difficult to be ‘recognised’ as a group, to be seen as distinct (as some would prefer), and to be prioritised.

Access to services and the forced assimilation of a deficit-based identity

In NZ, people with lived experience of disability are entitled to a range of support from Government organisations. These all have different eligibility criteria, with some related to the cause of impairment as is the case with supports provided through the Accident Compensation Corporation, and others still requiring a medical certificate from a general practitioner as is the case with the Government disability allowance (Work and Income 2022). The same impairment deficit basis also remains currently true for the disability support services for people under 65 years provided through the newly established Whaikaha – Ministry of Disabled People (Whaikaha), under legacy terms inherited from the previous fund-holder, the Ministry of Health, whereby a person seeking support is required to fit into an impairment and functional limitation model. This Disability Support Services access criteria is imposed on Māori with lived experience of disability who may not even identify as ‘disabled’ (Hickey 2006, 2008, 2020; Hickey and Wilson 2017) effectively forcing an assimilation to the Western identity paradigm and/or creating a barrier for Māori with lived experience of disability to access services.

Multiple identities

Despite an inclusive social identity among Māori, dynamically adaptive identity and differential lived experience are both recognised within te ao Māori through whakapapa (Te Rito 2007). For example, how Māori articulate their whakapapa is often contextual and adaptive to time, geographic, and social contexts (Te Rito 2007; Greaves et al. 2023). te ao Māori also recognises the distinction of age as an element in the cultural identity. Particular distinction and careful regard is given to the different life-stages, and particularly to those at either extreme – both young (i.e. pēpi, tamariki, rangatahi) (Clark et al. 2021) and old (i.e. kaumātua, koro and kuia).

Our reflection on the perspectives, knowledges and lived experiences of participants with regard to how they define and negotiate identity in relation to the contexts within which they are situated, draws upon Nikora’s (2007) work around the notion of ‘karanga rua, karanga maha’ (to be of two or more callings). As Nikora (2007) highlights, depending upon context, a ‘calling’ or an ‘identity’ might be more salient for a person at one time more than at other times. The important aspect of ‘karanga rua, karanga maha’ is that we are expected to be of many callings, and it is incumbent upon those in relational contexts to be aware and knowledgeable of such callings, least a person and the communities they identify with are slighted, overlooked or diminished. Furthermore, when asking a person about identity, Nikora (2007) places emphasis upon the ‘moment’, in that ‘identity’ may simply reflect a ‘snapshot’ of that ‘moment’. It is therefore more important to understand the ‘moment’ in order to understand the ‘identity’. Thus, the notion of ‘karanga rua, karanga maha’ is an important mechanism by which to understand how Māori with lived experience of disability conceptualise and express a plurality of identities within Māori collectives. This notion allows the reconciliation both of being Māori first, but also facilitating a dual or parallel identity that permits a secondary axis to identity based on the lived experience – however that is determined by that individual or collective. In other words, Māori with lived experience of disability can be Māori, but differently Māori (Nikora 2007).

Conversations are therefore needed internally within te ao Māori about recognising the identities of Māori with lived experience of disability and mechanisms that ensure adequate inclusion, representation and voice among Māori. Māori with lived experience of disability do face material differences in life events and outcomes, experience intersectional prejudices, and maintain an additional ‘parallel’ identity or collectivism compared with other Māori who do not share that lived experience. Strategies are required to reconcile the dichotomy between inclusive collectivism (that does not routinely distinguish Māori with impairments on the basis of disability) and the simultaneous empowerment of identity development and appropriate recognition of Māori with lived experience of disability inside or alongside traditional whānau/hapū/iwi structures.

Conversely, Māori with lived experience of disability, and the unique sense-making they bring, have a lot to contribute to the mainstream discourse on disability identity. Jaffee and John (2018) highlight how Indigenous epistemologies are likely to contribute much to addressing tensions in disability knowledge ‘between valuing disability (as a social identity and meaningful epistemic location) and rejecting interwoven systems of power (settler colonialism, capitalism, patriarchy and white supremacy) that produce mass disablement’ (p. 1408).

There is a critical need for a national-level dialogue led by, with, and for Māori with lived experience of disability, in relation to their own mātauranga regarding disability. Such a dialogue should be emancipatory in nature, allowing for reflection on the impacts of colonisation, coloniality and racism on ways of being, knowing, relating and doing for Māori with lived experience of disability, in concert with the recognition and acknowledgement of their tāngata whenua rights to tino rangatiratanga under Te Tiriti o Waitangi.

Identifying Māori with lived experience of disability – data collection

Self-determining identity and having that identity recognised is critical for Māori with lived experience of disability as it impacts on the ability to access services and the supports needed to connect culturally with te ao Māori. The fact that a national dialogue on Māori disability identity is yet to happen has adverse flow on implications for the way data and information about disability and impacts for Māori are collected and understood.

Accurately measuring the prevalence and the health, social and economic impacts of disability for Māori is vital to uphold rights under Te Tiriti o Waitangi and to mitigate existing inequities, yet routine disaggregation of national statistics by ethnicity and disability status – to permit intersectional analysis – is very rare. Even fewer data are available that recognise and acknowledge the multiplicative impacts of colonisation, coloniality and racism impacting this population (Hickey and Wilson 2017; Hickey 2020; Ingham et al. 2022a).

This persistent and pervasive scarcity of data represents a loss for Māori with lived experience of disability in terms of access to meaningful information that supports their priorities and aspirations for health and wellbeing.

As an example, the last national-level disability survey was undertaken a decade ago and was derived from assessment of functional impairment. It did not include any social or cultural context and was inconsistent with Indigenous framing of identity (Statistics New Zealand 2013). Stats NZ, NZ's national statistics agency, citing lack of funding, have reconciled to alternating Te Kupenga (the post-censal survey on Māori social wellbeing) with the NZ Disability survey (the post-censal survey on disability) after each 5-year Census. This means that each is only administered once per decade, but also rendering it structurally impossible to develop a meaningful insight into the social wellbeing of Māori with lived experience of disability (Office for Disability Issues 2016).

In addition to these issues of prioritisation, poor quality ethnicity data (Harris et al. 2022), and use of Western-centric concepts of disability in the development of national surveys, renders Māori disability data inaccurate and inadequate.

In NZ, the internationally standardised instrument known as the ‘Washington Group Short Set on Functioning’ (WGSS) are increasingly being implemented in national surveys and administrative datasets (Washington Group on Disability Statistics 2022). These questions screen for significant functional limitation or ‘impairment’ and in so doing, identify a population cohort ‘at risk’ of disability rather than measuring disability itself – the latter being the resultant prejudice of an ableist society on that at-risk group. The equivalents in other areas of prejudice are akin to merely recording gender or ethnicity in order to identify and address sexism or racism respectively.

To date, Stats NZ, has not designed or implemented any tools to identify or measure ableism nor any measures of disability that align specifically with Māori worldviews, are validated by and within Māori disabled communities, or that take account of the socio-cultural contexts of disability. This omission is despite both disability data and Māori disability inequities having been previously highlighted at national and international forums (United Nations Committee on the Rights of Persons with Disabilities 2014). The Washington Group on Disability Statistics are explicit that such screening tools are intended to permit longitudinal or international comparisons, not to approximate prevalence (Washington Group on Disability Statistics 2022).

Failure by government statistical and other agencies to collect accurate and meaningful data on Māori disability is a further breach of Te Tiriti o Waitangi (King 2019, Jones et al. 2020; Waitangi Tribunal 2021). Our study findings highlight that measures of ‘disability’ related identity, prevalence, socio-cultural contexts and intersectional impacts must be developed and implemented in genuine partnership with Māori with lived experience of disability.

There is a need for concerted government responses

Our study suggests that whilst efforts have been made within the machinery of government to establish Whaikaha, and to incorporate the views of Māori with lived experience of disability, the narrow focus Whaikaha has inherited on disability support services (Whaikaha–Ministry of Disabled People 2022) means such efforts, although important, are insufficient for te ao Māori concepts of wellbeing. Government explicitly mandated that the disability support system: gives full effect to the voice of disabled people, families, whānau, and to Te Tiriti o Waitangi and is consistent with the UNCRPD and the Declaration on the Rights of Indigenous Peoples (Social Wellbeing Committee 2021). Thus, all government agencies should be required to incorporate mechanisms that ensure Māori with lived experience of disability are active partners in decision-making and advice on matters of policy and service-design, implementation and monitoring.

The recent periodic review of NZ by the UN Committee on the Rights of Persons with Disabilities reiterated this particular point. The Committee called upon the Crown to

develop legislative and policy frameworks that reflect the Treaty of Waitangi, the Convention on the Rights of Persons with Disabilities and the United Nations Declaration on the Rights of Indigenous Peoples to ensure that Māori persons with disabilities are closely consulted and actively involved in decision-making processes and that their right to self-determination is recognized. (United Nations Committee on the Rights of Persons with Disabilities 2022, p. 2)

The committee further recommended that NZ ‘develop a national disability data framework to ensure appropriate, nationally consistent measures for the collection and public reporting of disaggregated data on the full range of obligations contained in the Convention, especially with regard to Māori persons with disabilities … ’ (United Nations Committee on the Rights of Persons with Disabilities 2022, p. 12). The inclusion of the full range of identity and socio-cultural components of disability will be essential in developing this framework, and these conversations must be led by, and in partnership, with Māori with lived experience of disability.

Conclusion

This study amplifies the voices of Māori with lived experience of disability, and in doing so highlights the impacts of colonial health and disability systems that have failed to both honour Te Tiriti o Waitangi and remove or address ableist policies, environments and attitudinal mind-sets. Māori ways of being, knowing, relating and doing are critical to advancing the understanding of the impacts of disability to address the priorities and aspirations of Māori with lived experience of disability, their whānau, and communities. Participants, in accentuating their current challenges and moemoeā as a journey towards the full expression of their tino rangatiratanga, not only within a colonial society but also within te ao Māori, highlight how positive transformative change is only likely to occur when it is led by, with, and for Māori with lived experience of disability.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Health Research Council of New Zealand [grant number 19-147 Jones].