Abstract

This article contributes to the discourse on disability from an indigenous perspective, an area which has not been investigated in any detail. It explores the perceptions of disability and lived experiences of 18 indigenous individuals with impairments from Australia, Mexico and New Zealand. The findings from this research suggest that participants from these countries share some common standpoints, particularly in relation to their disassociation from Western disability discourses and their common experiences of social oppression. This paper calls for further reflection about on-going colonisation and an in-depth analysis of the lack of attention given to this issue within the main models of disability.


Introduction

This article contributes to the discourse on disability from an indigenous perspective, an area about which there is very little known (Grech, 2015; Hickey, 2008; Meekosha, 2008, 2011). It supports the concerns raised by Meekosha that writings on disability have mainly come from 'northern' countries, asking the question: do disabled people in 'southern' countries share the same issues and ideas?

When attempting to answer this question it is necessary to acknowledge the impact of the power structure between the global north and south. Disability scholars from the global south and from indigenous populations within Western colonial settler societies, such as Australia and New Zealand, are putting themselves forward, writing about the impact that their identities and cultural roots have on their reflections and their struggles regarding decolonising their thinking (Barker & Murray, 2010; Hickey, 2008). Rivas Velarde (2015), when reflecting on immersing herself in indigenous issues and colonisation, wrote: "I was not fully aware of the impact of the processes of colonisation, colonialism, and neo-colonial power on the lives of disadvantaged people in the global South. I was not prepared either to reflect deeply about my indigenous roots and how through my so called formal education such values have been silenced" (p.35). The author's notion of oppression and view of decolonisation as a confronting act led her to undertake a process of rescuing her roots and identity, thereby adding to the claim of Grech (2015), who suggested that decolonisation is not simply a metaphor, rather it requires taking on a political process, owned by the global south, to confront colonial lineages, as well as embracing collaboration with the north. Whilst empowering the voice of the global south and working towards reconciliation, this paper reflects the efforts of disability scholars collaborating to decolonise disability.

Current dominant disability discourses do not sufficiently reflect the cultural assimilation or indigenous rights to self-determination from a native rights point of view (Grech, 2015; Meekosha, 2011). Moreover, colonial practices have been linked to high rates of preventable disabilities in the global south (Meekosha, 2008, 2011). However, rates of social deprivation associated with the causation of disability are only part of the issue, and it is equally important to understand how disability is perceived in the global south, particularly by indigenous people. The concept of intersectionality (Crenshaw, 1991) can help in understanding the complexities of how indigeneity and disability identity are compounded and how inequities have been triggered by this intersection. Hickey and Wilson (2017) claim that "being indigenous, having experiences of colonisation and institutionalisation, experiences of racism and discrimination, and living with disabilities gives rise to multiple identities that go unseen by people with or without experiences of disability" (P. 89). They state that this is critical to understanding these identities, as indigenous peoples have to struggle with issues related to race, colonisation, and the marginalisation of disability in their community and society in general. Failing to do so will not only perpetrate segregation, but will also allow disability scholarship to continue theorising about indigenous people without acknowledging their viewpoints, lived experiences and needs.

Indigenous Voices in Disability Studies

Contemporary literature indicates that indigenous communities find the term 'disability' to be alien and somewhat contradictory to their traditional beliefs concerning impairments (Connell, 2011; Hickey, 2008; King, 2010). Nearly two decades ago, Ariotti (1999) conducted a study in Western Australia which revealed that the Anangu people, rather than seeing impairments, celebrated uniqueness and accepted the diversity and difference present within humanity. Subsequently, Meekosha (2011) has urged researchers and policy-makers in Australia to listen to indigenous peoples' concepts of disability, as these are absent from current policy and legislation.

In keeping with the outcomes of the study of the Anangu people, the Māori community in New Zealand has also reported a need for disability to be constructed in a more positive and integrated fashion than is the case in Western scholarship (Fitzgerald, 1997). Māori people see the nature of humanness as a unique and interrelated phenomenon, which connects the past, present, and future through land attachment and spiritual well-being, with interrelations at its core (Hickey, 2008). As such, inter-dependency between heritages, time and space cannot be easily transferred to the Western conceptualisation of humanity. This ancestral Māori conceptualisation embraces differences and uniqueness, and so impairment is a natural part of being. This approach opens up a major divide between the indigenous concept of uniqueness with the non-indigenous concept of impairment and ultimately disability, with indigenous enquiry incorporating non-empirical and non-generalisable dimensions.

Gotto (2009) explored the ways in which people with intellectual impairments were integrated into indigenous communities in Mexico, and reported that such individuals were valued and respected members who were recognised for their contributions, rather than for their impairments. In line with the findings from Mexico and examples from Australia and New Zealand, indigenous traditional beliefs work to welcome individuals as people first, with a reluctance to identify them as different, impaired, 'deficient' or disabled. Shakespeare (1996) cautiously stated that having an impairment may be a common experience, and being disabled is the specific social identity of a minority, yet being disabled as a social identity is not accepted by indigenous people. Watson (2002) also argued that this discrepancy is not exclusive to indigenous peoples and that the use of the term 'disability' has not always been welcomed by non-indigenous groups who are disabled. In his paper entitled 'Well, I know this is going to sound very strange to you, but I don't see myself as a disabled person: identity and disability', Watson (2002) challenged the concept of identity in disability scholarship and argued that 'disabled' persons share one important attribute, which is that they are all subject to oppression regardless of how they identify themselves. Watson (2014) has added strength to Shakespeare's arguments by claiming that culture is both a source of oppression and liberation for disabled individuals. In this sense it is easy to see that what has emerged as a political strategy for the liberation of disabled persons in the global north has arguably widened the divide between the north and the south, thereby reinforcing oppressive ideologies.

Further insight into indigenous identity comes from Barker and Murray (2010), who explained that for some indigenous people the determination of normalcy in wellness and health is dependent upon whether an individual is in balance with his/her spirituality, family, social connections and ancestral attachment to the land. This acknowledgement of indigenous needs is inter-connected with a responsiveness to cultural needs, which is related to cultural competency. However, meeting the needs of indigenous people has been limited to looking at outcomes, as opposed to building theories or discourses that are relevant to disability based upon the experiences of indigenous people (Bickenbach, 1999). In view of the emphasis placed on culture in indigenous groups, the development of a constructivist approach to disability is relevant, as it incorporates both culture and life experiences of indigenous people in the postcolonial era (Snyder and Mitchell, 2007). With such an approach, indigenous identity, self-determination and culture become the driving force for the liberation of indigenous people in the global south through addressing the diversity, uniqueness and history of each indigenous region, tribe and community from around the globe (Bhopal, 2008; Durie, 1998).

When focusing on the importance of indigenous identity, Hickey (2008) used the concept of 'othering' (Foucault, 1972) to describe how disabled indigenous identities have been negatively perceived by non-indigenous people. Foucault (1972) first introduced this concept after working with vulnerable people who were seen as 'other', rather than as having any value. The lack of knowledge production on how disability is perceived in indigenous communities is another aspect of 'othering' and indigenous discrimination (Creamer, 2009). In support of this position, Lavallee and Poole (2010) have argued that knowledge of indigenous peoples' systems and beliefs has been disregarded, whereas this should be incorporated into augmenting, extending and contributing to contemporary disability enquiry.

Furthermore, from an epistemological viewpoint the construction of a discourse on indigenous disability needs to challenge the traditional Western construction of disability knowledge (Meekosha, 2008). Smith (1999) similarly has discussed the 'regimes of truth' which are situated within a particular cultural social system and need to be 'decolonised'. In this context an indigenous approach to disability must confront the epistemology of the Western approach to research, which has concentrated on positivism rather than on research of a participatory nature (Gilroy, 2016; Grech, 2016; Smith, 20007).

Methodology

The qualitative research reported in this article is part of a doctoral thesis which is titled "The Convention on the Rights of Persons with Disabilities and its Implications for the Health and Wellbeing of Indigenous Peoples with Disabilities" (Rivas Velarde, 2014). One of the aims of this research was to investigate the perceptions of indigenous peoples with disabilities on how their health needs are being met, as well as their impairments, and this paper reports the findings that emerged.

Australia, Mexico and New Zealand were selected for this study, as the variation and parallels between these countries allowed for the identification of facilitators and barriers to the representation of the indigenous voice. These three countries are all signatories to the Convention on the Rights of Persons with Disabilities (CRPD), have a shared history of colonisation, and each recognise the existence of indigenous peoples. The sample countries were selected to represent a spread of political, geographical and historical differences in order to gain insights into the diversity of lived experiences across indigenous groups. In addition, this enabled implications for international policy development to be identified.

In total 50 participants took part in the doctoral study, including indigenous persons with disabilities, health workers, senior decision-makers, and policy-makers who represented their country as official delegates during the negotiations on the CRPD from Australia, New Zealand and Mexico. This paper focuses on 18 indigenous individuals with disabilities who come from these countries.

Indigenous Participants

The views of 18 indigenous people from across the three countries were gathered: six from Australia, six from Mexico and six from New Zealand. The purposive criteria for selection include:

  • People who identified themselves as indigenous
  • A range of different types of disability
  • A cross-section of genders
  • A spread of geographic locations
  • People who were interested in participating.

Six participants from each country were identified using non-probability sampling (Zhong, 2009), and at each of the sites indigenous leaders hosted a formal or informal information session and issued an open call for potential participants. From the replies received, the lead author, together with an indigenous representative from the local area, selected six participants who fulfilled the inclusion criteria.

Data Analysis

Data collection involved semi-structured interviews and field notes, and the design of these tools considered Lincoln and González's (2008) approach to 'decolonise' methodology and research. The methodology included working with bilingual data, consideration of non-Western cultural traditions, and the presence of multiple perspectives in texts, as well as technical issues to ensure accessibility (p.785). In Mexico the data were collected by an indigenous researcher from Michoacán, who was supported, as in the other two countries, by local indigenous leaders who acted as key informants and facilitators for sampling and the recruitment of participants, together with the collection of data. The data gathered were verbatim-transcribed and analysed using NVivo10, following case study analysis guidelines (Yin, 1994) and the incorporation of grounded theory tools (Corbin and Strauss, 2007).

The organisation of the data collected complies with the system of coding described by Corbin and Strauss (1997), who proposed that there are different stages when analysing data: break down, organise, investigate and reflect. This is accomplished by open coding, followed by axial and then finally selective coding. Categories were re-analysed and codes were moved from one category to another until the structure of the categories was strong and showed sound correlations, and a point of saturation had been reached. The refinement of axial coding was guided through the research and sub-questions, while grounded theory tools were used to analyse the collected data, including the constant comparative method, 'flip-flop technique', 'waving red flags' and theoretical sampling. Each of the three locations, Australia, New Zealand and Mexico, were coded separately and then this was followed by a cross-case analysis.

Limitations of the Study

The rationale for the design of this research was to portray, in the best possible way, how the health needs of indigenous individuals with disabilities were being meet in the theoretical and practical contexts of the CRPD. A need for additional research, in order to understand diversity across indigenous individuals with disabilities and their experiences not only relating to their health but also their understanding of disability, has arisen from this study. Indigenous populations, even within the same country, may hold significantly different views on this issue and so it is necessary to gather further data regarding indigenous persons with disabilities, with particular attention to prevalence and type of disabilities, as well as the context in which indigenous persons with disabilities are living. It is important to know more about how contextual factors, such violence, armed conflicts, traffic and human exploitation, impact the lives of indigenous persons with disabilities, particularly indigenous women with disabilities.

Findings

Historical Context

The indigenous groups selected for this study, Aboriginal and Torres Strait Islanders, Purepechas, and Māori, exemplify the different types of colonial settlement. Australia and New Zealand represent settler colonial states and Mexico a non-settler colonial state. In settler colonial states the settler population constitutes the majority and thus dominates institutions (Anderson et al., 2006; Frankema, 2010). This is the case in Australia and New Zealand; however, there is a difference between the two countries due to the existence of the Treaty of Waitangi in New Zealand. The Treaty of Waitangi was signed in 1840 and safeguards the sovereignty of the Māori people; it gave the British Crown the right to govern and to develop a British settlement, while in return it guaranteed the Māori full protection of their interests and status, and also gave them full citizenship rights (Treaty of Waitangi Tribunal, 2012). In contrast, Aboriginal and Torres Strait Islander people in Australia have historically been substantially restricted in their civil and land rights (French, Vince and Saunders, 2003), and application of the terra nullius principle led to their self-determination and political status being affected. Progressively, Aboriginal and Torres Strait Islander people have achieved some recognition of their rights (Anderson, 2007). Aboriginal and Torres Strait Islander people and the Māori are examples of two variations of settler colonial states, whilst Mexico represents a non-settler colonial state.

In Mexico the prevalence of intermarriage between settlers and local tribes-peoples led to a new group of people called the Mestizos, and it is this group who constitute the majority and control local institutions (Bello, 2011). This phenomenon created three social groups in Mexico: colonisers, Mestizos and indigenous peoples.

Overall Cross-Country Findings

Different expectations and experiences of health care were recounted in the three countries; however, the views regarding impairment and disability revealed strong similarities. Data presented in this paper reports on one of the core themes that emerged from the cross-country analysis, namely the views of indigenous persons with impairments in relation to disability and impairment.

Self-identification as a Person with a Disability

The cross-country analysis suggested that, regardless of the differences in terms of socio-political and historical context, indigenous persons with impairments in Australia, Mexico and New Zealand expressed similar views in relation to the concept of disability and impairment. Participants across the three case studies did not identify as a person with a disability, and demonstrated a very reluctant attitude to be associated with such a term. Overall, disability was seen by participants as an alien concept, and was often referred to as Western or 'doctor's' language.

Indigenous persons interviewed for this study acknowledged their impairments and the needs that arose from living with a particular impairment, but by no means perceived that such needs lessened their contribution to their communities. Some participants stated that having impairments placed limitations on their abilities to undertake certain tasks, but that they were not disabled, as they were told or inferred to be, as they could do many other things. This distancing from the term disability was acutely expressed in the following quote: "Disability, it's like when people tell you that you cannot do a thing" (Mx,M.1), 1 while a female participant from Australia stated "Disability didn't exist" (A,F.3) and another participant from New Zealand summarised the situation by saying "In my community I'm not disabled" (NZ,F.1). Being limited, oppressed or facing barriers was often linked to life outside the participants' communities, and these quotes portray the void that was present regarding the term 'disability'. Furthermore, it also demonstrates the shared viewpoint that emerged across participants about being told 'to be disabled' by non-indigenous health professionals, which was seen as an unwanted label that overrode their own identity and ability to present themselves as they wished. The following participant further elaborates on this imposition: "As a Māori woman well I don't identify myself as disabled. I find that word a negative, disgusting deficit word. I don't know why anybody would want to dis my ability, it's that simple" (NZ,F.1). The depth of this participant's reflection reinforces the overall rejection of such a term and elaborates on the epistemology of disability, as it highlights that her contributions, her actions, and her abilities were not 'dis' or otherwise limited by her impairment.

The findings that emerged are in line with Shakespeare (1996), who claimed that disability is a social identity. Indigenous peoples with impairments separate their social identity from their experience of living with impairments, and their narratives revealed that they interpreted disability as a Western construct and a current manifestation of ongoing colonisation, if they were to comply with it. Most indigenous persons focused on their own contributions to their families and communities, and not on the restrictions that arose from their impairments. An ability to contribute in some way to their family and community enabled them not to view themselves as disabled.

Othering

The findings showed that participants perceived a clear divide between indigenous and non-indigenous individuals. In addition, mainstream structures and services were viewed as distant to indigenous communities and resulted in a 'them and us' dichotomy. This division was rooted in a perception of discrimination, lack of communication, and ultimately an uneven power structure.

Furthermore, the term 'disability' was seen by the indigenous participants as a term that distinguished 'them' from 'us', as expressed by the following participant; "The doctor said that she is a girl with a disability, but I don't think that the case…we don't think that of her" (Mx,F.2). This differentiation is also captured in the following comment with reference to ethnicity and physical differentiation "between the white fellas and the blackfellas there's a different attitude that's all" (A,M.1). Many of the narratives illustrated this dichotomy, providing insight into what is discrimination and the following participant elaborated on this argument, stating that "You barely see any Māoris being a doctor […] these white doctors are pretty good, they're pretty smart" (NZ,M.1). This suggests that more needs to be done to enhance enabling factors that allow indigenous peoples to connect with their identities as indigenous persons in a positive and empowering manner, or as Barker & Murray (2010) put it, to decolonise their thinking. Furthermore, a sense of shared fear divided the 'them' and 'us': "They are afraid …we are afraid of the way they may treat us, because who we are" (Mx,M.3).

Impairment aside, oppression, limitations and fear of discrimination were rooted in the identities of these indigenous persons, and the differentiation and distancing between 'them and us' (indigenous and non-indigenous) extended to other aspects of their lives. A key aspect of this difference was evident in the form of cultural and spiritual processes that indigenous persons aligned to their impairments, as participants stated that resolving the spiritual cause of their impairment was highly significant to them and helped to alleviate the physical symptoms.

Experience of Impairment

Cultural beliefs and historical views impacted on how impairment was perceived, and discourses emerged that were imbued with both positive and negative views on the lived experience of impairment. Participants from across the three countries celebrated individual uniqueness, perceiving that individuals' bodies, minds and spirits are part of a continuum which goes beyond their temporal existence. When negative reflections concerning impairment emerged, then these were charged with moral judgments and grief, but ultimately there was positive acceptance of their uniqueness. The following quote portrays the positivity attached to impairment and reflects the view that the community and family have of an individual with an impairment; "I remember there was a wee boy who was born and lived for maybe seven years and he was seen as a gift to his whanau [family] but his mum would say he was always meant to be here for a reason" (NZ,F.2).

Evoking the social model of disability (Oliver, 1984), the following quote elaborates on the overall acceptance of diversity across indigenous communities and the rejection of the notion of 'curing' or 'fixing' an individual with an impairment in order to fit into the community; "Across Māori, blindness was more accepted…as you are, you weren't tried to be cured of that" (NZ,F.2). Taken together, an overall sense of acceptance dominated this theme, "this is just normal it is the way I am" (Mx,M.4).

However, there was also some negative thinking attached to impairment, as for some participants impairment was the negative consequence of a wrong action in the past or present, or the sequela of a natural phenomenon. The following quote exemplifies this; "It was probably because of the eclipse, we had an eclipse [...], and this thing happened" (Mx,F.2). Multiple aspects of the participants' past, present and future lives emerged, as well as a perceived interconnection with their environment, families and communities; "Tohunga [told me] my accident was to do with my father … something to do with this tree or something, he wasn't supposed to cut it down, to keep it short, and one of my old nans that passed away put like a spell or a tapu on him, so all his male, like his sons and all that, his seed will stop" (NZ,M.3). The following participant also elaborates on this point; "It is recognised that some disabilities come from accidents or whatever else, but those beliefs also is to do with the spirit world and something that you might have done or your family has done is your punishment" (A,F.3). Although aware of the medical causes of their impairments, participants placed great importance on looking at the spiritual aspect of them, and acceptance, healing and spiritual balance were key aspects that dominated the narratives concerning the experience of impairment. This is in agreement with the findings of Hickey and Wilson (2017), who stated that indigenous perspectives on disability encompass spiritual, holistic, relational and environmental dimensions. These narratives are also in line with the view in which disability is not seen as defining a person but rather as a characteristic which seems to move to the forefront when barriers are encountered and their ability is compromised by their environment (Hickey and Wilson, 2017).

Participants related that living with impairments was at times challenging and this did prevent them from accessing services. Nonetheless, they linked these barriers not only to their impairment, but also with their identity as an indigenous person. The following quote summarises these feelings: "I applied for the job…They told me that they have not received my documents and that I did not comply with the application procedure correctly. I guess they ripped it up and threw it away. They think that we are not trustworthy people, they don't like people like us" (Mx,M.5). The following participant elaborated the barriers he had encountered when trying to access education; "Nah. When I was out …I didn't have education. Used to get flogged around all the time, all the time and when I came home here I took it out on my people […] I said I'm not mad" (A,M.2). Another participant stated that "A lot of people talk about it's the worst of black people, there's a lot of racists out there, in our society" (NZ,M.3). Thus, it was through the acceptance of their communities and the empowerment associated with self-identifying as an indigenous person that participants found the strength to reject such experiences of discrimination.

The Strengths of Indigenous Identity

Self-identification as an indigenous person was linked with wellbeing, which acknowledged people's history, their culture and their attachment to the land, and represented a way of standing up to the history of oppression. Indigenous persons with impairments often noted that their indigenous values were a way of coping and battling against what they perceived as the oppressive labels associated with the term 'disabled'. Participants' identity as an indigenous person was of prime importance, and its celebration is encapsulated in the following quote: "I'm Aboriginal. I'm a full blood Aboriginal." [Interviewer] "What does it mean to be Aboriginal?" [Respondent] " Oh, black power" (A,M.2).

Throughout the three countries respective self-identification as Purepecha (indigenous peoples inhabiting the Purepecha plateau located between the Mexican state of Michoacán and Colima, originally referring to the Purepecha language spoken there), Aboriginal and Torres Strait Islander (first inhabitants of Australia), or Māori (indigenous population of New Zealand) was very important to the participants with impairments. Being an indigenous person 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. Being an indigenous person today has a social and political meaning, and the political one was evident when narratives were used to recall individual history as an ongoing struggle for recognition and self-determination. Overall, indigenous identities were linked to blood ties, ancestries, and a socio-cultural approach to life. This discourse was encapsulated by "I'm proud to be Māori, I'm proud of my culture. Yeah it's good" (NZ,M.4), while another stated "Well I'm proud of it. Very proud of being an Aboriginal woman. Black woman. That's all I can say. I'm very proud to be a black, Aboriginal" (A,F.1). Intergenerational relationships and a strong sense of belonging were core elements of indigenous peoples' identity. Values entrenched in being indigenous included attachment to the land and community life, as illustrated in the words of one of the participants; "I am Purepecha, I am from here, from near the lake, we are from here, we are a community" (Mx,F.2). The personal narratives acknowledged race, language and geographical location as part of a person's identity, with a strong focus on a sense of belonging.

The theme of identity recalled in the narratives of the participants reflects the work of Grech (2015), Hickey (2008) and Meekosha (2014, 2011). The works of these authors agree that 'being disabled' is an identity that is seen as an added imposition for indigenous peoples with impairments. The discourse of the participants showed that the will and culture of indigenous peoples with impairment is being overlooked within social structures, including disability studies.

Conclusions

There is an urgent need to create a dialogue between indigenous and non-indigenous peoples in relation to their understanding of disability and impairment. The emerging literature reveals that disability scholars from the global north and south need to engage in further reflection on the language and concepts concerning disability, and it is important that such reflections address how colonialism and the resulting social disadvantages have led to dislocation, the loss of land rights and disruption to traditional livelihoods, resulting in violence, substance abuse and mental health issues. These factors are recognised as being correlated to high rates of impairment, and a meaningful dialogue about the experiences of impairment and disability amongst indigenous peoples cannot occur in an historical vacuum.

The findings from this research suggest that indigenous persons with disabilities from Australia, Mexico and New Zealand share some common standpoints, particularly in relation to their common experiences of social oppression, the importance placed on family ties and community networks, as well as spirituality.

It is critical to open up a dialogue that allows for further reflection on uneven power structures and ontologies of disability. Such a dialogue needs to be of an emancipatory nature, allowing reflection on on-going colonisation and its impact on social structures and academic discourses. It is necessary to start the dialogue within disability studies about what it means to be discriminated against, together with addressing and challenging the lack of agency to become self-determining from an indigenous perspective. Opening up such a dialogue will in turn legitimise the use of epistemologies and methodologies that enhance the voice of indigenous peoples from the global south (Barker, 2010; Denzin, 2008; Smith, 2007).

It is important to also look at the process archive, as since the data was collected the National Centre of Mental Health Research, Information and Workforce Development in New Zealand has published 'Te Reo Hāpai - The Language of Enrichment', which contains more than 200 Māori words, terms and whakatauki, proverbs that play a large role in Māori culture. The CRPD has been translated into Te Reo Māori, and these efforts represent an important step forward in acknowledging political participation and enabling meaningful engagement with indigenous worldviews concerning impairment and disability.

This paper contributes to the decolonisation of Disability Studies by presenting the views of indigenous persons from the global south and their claims for self-determination. It also calls for further reflection about on-going colonisation and an in-depth analysis of the lack of attention given to this issue within the main models of disability.

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Endnotes

  1. Identification codes have been assigned to participants indicating first their country, followed by their gender and identification number. For example, Australia/New Zealand/Mexico, Male/Female, Participant number (A/NZ/M,M/F.1).
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