Decolonising disability: weaving a Quandamooka conceptualisation of disability and care

Abstract

This manuscript delves into Indigenous experiences of disability, specifically the Quandamooka community, starting with contextualising disability among First Nations people in Australia. It summarises criticisms of the National Disability Insurance Scheme (NDIS) and offers historical insights into Quandamooka country and Indigenous disability in Australia. Central to this manuscript are Quandamooka caring principles which highlight disability’s cultural significance and its triadic essence within Quandamooka society. Collectively, these principles underpin social connections, encompassing elements like collective wisdoms and the custodial ethic. These foundations yield pillars of collective protection, activated through kinship circles. These insights resonate with disability themes for Maori peoples where fostering compassion, acceptance, support, and interdependence are important for well-being.

Points of interest

• Indigenous communities historically had sustainable care systems deeply connected to nature and mutual respect, emphasising the interdependence of individuals in supporting each other.

• The National Disability Insurance Scheme (NDIS) can sideline the needs of Indigenous communities due to its predominantly Western/Global North influence, resulting in limited access to necessary support.

• Indigenous knowledge, rooted in an understanding of nature’s interconnectedness, offers valuable insights for creating inclusive care systems beneficial to everyone.

• Embracing Indigenous perspectives on disability and care is crucial for developing fairer and more balanced care systems.

Keywords:

• Aboriginal
• First Nations
• Indigenous
• disability
• impairment
• decolonisation
• inclusion
• caring

Terminology

Country- This term is used by First Nations people to encapsulate the land, skies, waterways and all things that exist in a specific location reflecting a holistic and interconnected understanding of the environment as alive, conscious and encompassing spirituality, culture and community.

Elders- Elders are highly respected members of First Nations communities. Their role includes the maintenance and creation of Indigenous ways of knowing, being and doing.

Mob- This term can be used in a number of ways, here it is used as a term to refer to the broader Quandamooka community.

Western- This term is used to refer to ways of knowing, being and doing that has been generated from a white, Eurocentric, global-north or Anglo-Australian ontological position.

First Nations: This term is used in conjunction with Aboriginal and Torres Strait Islander and Indigenous to refer to traditional owners of Australia.

Background

First Nations peoples in Australia reportedly experience disability at 1.9 times the rate of non-Indigenous Australians (Australian Bureau of Statistics (ABS)), 2021). This disparity highlights the significant challenges faced by First Nations communities in relation to disability. However, it is important to note that the prevalence of disability is just one aspect of a much broader context of disadvantage experienced by First Nations peoples that is resistant to change using methods drawn from the dominant culture in Australia (Commonwealth of Australia 2022). Further disparity can be observed in participation rates, the National Disability Insurance Agency (2020) reports that participation of First Nations peoples with disability sits around 5% with slow improvement. This rate of participation is far below the reported rate of disability in First Nations communities in Australia.

The elevated levels of disability and lack of participation in disability services have been attributed to a number of factors including experiences of racism and discrimination across all sectors, and diverse conceptualisations of disability (Avery 2020; Gilroy et al. 2016). First Nations communities in Australia have long endured systemic discrimination, racism and social inequality, established by colonisation and ongoing marginalisation (Abbott et al. 2017; Baldry et al. 2016; Brough et al. 2007). We use the term ‘inherited inequality’ to describe these challenges which are interconnected with factors such as poverty, mental health issues, transgenerational trauma, post-traumatic stress disorder, incarceration, and poor health outcomes (Australian Bureau of Statistics 2016; Bhandari et al. 2015; Bowles and Gintis 2002; Riley, Monk, and VanIssum 2019). The cumulative impact of these intersecting factors further compounds the disadvantages faced by First Nations peoples with disabilities (Avery 2019).

The national disability insurance scheme (NDIS)

The National Disability Insurance scheme (NDIS) was introduced in Australia as a means of addressing the support and service needs of individuals with disabilities, including First Nations peoples. The NDIS is a social insurance scheme that uses an individualised support program for Australians aged under 65 years living with a permanent and significant disability and seeks to provide reasonable and necessary supports to meet the needs of participants (National Disability Insurance Agency 2019). The purpose of the NDIS is to improve outcomes for people with a disability through mainstream service provision, promote disability issues, and to ensure inclusion of people with a disability in society (Australian Law Reform Commission 2008). The six key policy areas of the NDIS are a reflection of those set out in the National Disability Strategy: rights protection; justice and legislation; economic security; personal and community support; learning and skills; and health and well-being.

The NDIS has four insurance principles: firstly, the total annual funding required by the NDIS is determined by an actuarial estimate of the reasonable and necessary support needs of the target population; secondly, the NDIS takes a lifetime approach by investing in people early to build their capacity and achieve more significant outcomes later in life; thirdly, the NDIS will invest in research and encourage innovation; and finally, the NDIS can act at the systemic level, as well as fund individual support needs. The general principles of the NDIS Act stipulate that efforts be made to support the rights of people with a disability to realise their potential, and that encouragement to access supports as well as to participate and contribute to social and economic life be made available. Additionally, the general principles try and ensure certainty around the supports and care that people with a disability require, that they are offered support to exercise choice in the pursuit of their goals and the planning and delivery of supports. The general principles stipulate the right to privacy and dignity, to live free from abuse, neglect and exploitation and the right to pursue any grievance. The Act also includes principles that guide the actions of people who act on behalf of a person with a disability (National Disability Insurance Agency 2019).

Criticisms of the NDIS

While the criticisms levelled here may resonate with disability scholars and sectors globally here the focus is on the Australian disability context. Fawcett and Plath (2014) argue that the prevailing ‘clinical bio-social-psycho-social’ model reinforces the medical paradigm, with little challenge. It centres on normalcy defined by non-disabled individuals, reinforcing incapacity and marginalisation. Horsell (2020) explains that the NDIS, driven by neoliberal ideals, doesn’t challenge ableist principles underlying concepts like ‘meaningful participation’ and choice. This context creates a risk of excluding those who can’t meet preset goals, entrenching inequality (Horsell 2020). Cortese et al. (2020) criticise the NDIS’s individualistic, neoliberal goal of community and employment involvement, neglecting systemic barriers. Thomas (2021) highlights how the NDIS’s deficit model is symptomatic of neoliberal-ableism, devaluing and marginalising people with disabilities. This exploitation of neoliberalism, harmful to historically marginalised groups, also affects First Nations peoples (Gordon, Dew, and Dowse 2019; Thomas 2021).

The NDIS claims to embrace the social model of disability, focusing on social structures and inclusion (Fawcett and Plath 2014). However, it adopts individualised, neoliberal principles, marginalising specific disabled individuals (Horsell 2020). This approach contradicts First Nations’ holistic values, reinforcing inequality and exclusion (Horsell 2020). The NDIS’s reliance on predetermined categories imposes Western norms on First Nations people, continuing colonial exclusion and dominance (Gordon, Dew, and Dowse 2019). The NDIS overlooks colonial history’s impact on First Nations disability and inequality, fostering dependence on colonial systems (Cooms, Muurlink and Leroy-Dyer, 2022; Moreton-Robinson 2015). Colonially fostered racism and discrimination affect service access rates, underscoring systemic flaws (DiGiacomo 2013; Temple et al. 2020). Phuong (2017) and Cortese et al. (2020) reveal the NDIS’s inadequate intersectional approach, failing to address complex needs.

First Nations’ collectivist values and conflict with the NDIS’s individualism, deepening distrust (Dew, McEntyre, et al. 2019; Gilroy et al. 2016). Colonisation’s ongoing effects intersect with disability, reinforcing disadvantage (Hollinsworth 2013). ‘Dollar dreaming’ (Habibis, Taylor, and Ragaini 2020) explains how neoliberalism exacerbates intersectional inequalities, reflected in the NDIS commodification. This disconnect from culture, kin and country harms First Nations communities (Habibis, Taylor, and Ragaini 2020). NDIS services driven by market forces neglect culturally appropriate options (Dew et al. 2020). Bourdieu’s cultural capital (1984) illustrates how colonial imposition devalues First Nations resources, perpetuating inequality that the NDIS can not respond to (Gordon, Dew, and Dowse 2019). Cultural capital encompasses the knowledge, skills, education and cultural resources an individual possesses, which can be leveraged for social and economic advantage. However, within the framework of colonial systems, the imposition of Western assumptions and values has systematically devalued and marginalised the cultural capital of First Nations peoples, perpetuating a continuous cycle of disadvantage and constraining opportunities for social mobility. The NDIS’s failure to adequately acknowledge the impact of cultural capital perpetuates a cycle of inherited inequality and hinders meaningful progress towards equitable disability support (Broom et al. 2023). Furthermore, the NDIS prioritises individual achievement over collective values without considering the context in which the disability occurs, furthering inequality and creating conflict in low-socioeconomic families and communities (Gordon, Dew, and Dowse 2019; Horsell 2020). The NDIS’s western approach fails to consider cultural caring priorities, or the inherited inequality associated with colonisation and the intersectional experience of racism and discrimination in Australia, further entrenching inequality (Gordon, Dew, and Dowse 2019; Horsell 2020).

Brief history of Quandamooka country

Quandamooka, also known as Moreton Bay, is located around 14 kilometres off the coast of Brisbane in Southeast Queensland, Australia. Moreton Bay is formed by two large sand islands- Minjerribah (North Stradbroke Island) and Mulgumpin (Moreton Island). Minjerribah is the largest sand island (second largest in the world) (Guille, Gwyther, and Costello 2020). This bay has a sub-tropical climate and there are around 360 islands within it (Pantus and Dennison 2005). Quandamooka people have been custodians of this Country for at least 25,000 years and this Country includes Minjerribah, Mulgumpin, the islands in the bay and the littoral between the mouth of the Logan river and the Brisbane River (Pantus and Dennison 2005; Walker 1998). The Quandamooka people maintained connection to Country despite the impact of colonisation and the massacre of the Ngugi people on Mulgumpin in 1832 (Guille, Gwyther, and Costello 2020). Together, the Noonuccal, Goenpul and Ngugi people are the Quandamooka people and speak dialects of a Durubalic language, Jandai (Prangnell, Ross, and Coghill 2010). The first known interaction between Quandamooka people and colonisers occurred in 1803 when Matthew Flinders came ashore, and locals helped him find water. Flinders was surprised to discover that local Aboriginal peoples could understand and speak English (Cooms 2015), suggesting that the Quandamooka people had prior contact with non-Aboriginal people (Cooms 2015). In 1823, Noonuccal people on Minjerribah housed, fed and assisted shipwreck survivors, despite this, violent clashes between 1831 and 1832 occurring between Quandamooka people and Europeans with a massacre recorded in 1832 of the Ngugi people on Mulgumpin. Additionally, in 1847, a ship the Sovereign sank in the south passage between Moreton and North Stradbroke Island, and 10 passengers were rescued by Quandamooka people from Moreton and Stradbroke Islands (Redland City Council 2005). A temporary Catholic mission was set up (1843–1846) at Myora (Campebah), the Queensland Aboriginal Protection Association established another mission in 1892 that was declared an industrial and reformatory school in 1893 and later changed to an Aboriginal Reserve in 1896, closing in 1943 due to witnesses reporting excessive use of force and the ability of the Quandamooka people to manage themselves (Anderson 2001; Coghill 2013). A quarantine station at Dunwich (1850– 1864) was later converted into a long-lasting benevolent asylum (1866–1946).

A lot of those children got taken away in the early days. My sister had a disability, still does, and they took her away and locked her up away from her family. She got no help with her disability - they just took her away (Elder 2).

We had the Benevolent Society here, but half the white people were not mad or anything. They just put them away when it got difficult, into the ‘too hard’ basket. We kept them and just looked after them (Elder 2).

The Elders interviewed in this research project reported that people with disability were some of the first removed from country and kin. Despite this, the benevolent asylum was established from 1866-1946 that required access to cheap labour, it had around 70% of employees who were Quandamooka people, made dependent on the rations and often unpaid wages for survival (Burgin 2020; Cooms 2015; Walker 1998). Any Aboriginal person who was unhappy and voiced concerns about their working conditions were removed from country (Cooms 2015). This is an interesting situation, Quandamooka people were not allowed to care for their own people with disability but were forced to provide care for non-Indigenous people with disabilities or impairments. It is likely that this unique experience of colonisation has impacted on knowledges and practices towards disability.

Broader history of first nations disability in Australia

The experiences of removal and institutionalisation of First Nations people with disability in Australia is something that is reflected across the globe but what makes this position unique is the intersection of disability and race in the context of colonisation. Soldatic (2018, p. 54) argues that in Australia ‘The techniques of governance, the boundaries of rule and repertoires of population patterning were grounded in a scientific racism that sat beside an ideology of scientific ableism.’. King, Brough, and Knox (2014) posit that the effect of colonisation continues to impact the lives of First Nations peoples with disabilities, emphasising the urgent need for decolonisation in the disability context. Moreover, Gilroy et al. (2016) suggest that colonisation has resulted in limited access to services and support for First Nations families. It is crucial for disability research to consider the intersection of race, culture and gender and acknowledge how mistreatment and racism towards First Nations peoples have impacted the prevalence, recognition, and responses to disabilities within these communities (Avery 2020; Ben-Moshe and Magana 2014; Collings et al. 2018; Gilroy et al. 2016; Grech 2015). Australia’s history of pathologizing First Nations cultures, lifestyles, and bodies, as well as engaging in eugenics practices such as sterilisation and control of sexuality, must be unpacked to understand the current situation (Hollinsworth 2013). For example, historical records reveal instances where intellectual impairment or disability was exploited to exclude, incarcerate, or forcibly remove First Nations peoples (Gilroy et al. 2018; Hollinsworth 2013; Human Rights and Equal Opportunity Commission 1997). First Nations peoples with disabilities were subjected to experimentation and foreign notions of health and well-being, while disability research was misused to further marginalise them (Gilroy et al. 2018). For instance, Dr Cecil Cook, the Chief Medical Officer and Chief Protector of Aborigines in the Northern Territory from 1927 to 1939, sought permission in 1933 to sterilise ‘half-caste’ children he deemed ‘congenital idiots’ or ‘mentally defective’ (Hollinsworth 2013). Australia is not alone in this problematic history with reports of sterilisation being used in early North America for people deemed as ‘mentally deficient’ (Park and Radford 1998), and Nazi Germany under the Law for the prevention of genetically diseased offspring (Sifris 2016). Sifris (2016) positions this within an intersectional lens and argues that the multiple forms of discrimination lead to a compounding of discrimination for people with disability contributing to this issue. What is unique in the Australian context is that Aboriginality itself was considered as a disability.

The ongoing impact of colonisation on First Nations peoples in Australia is evident within the field of psychology, where systemic racism, denial of historical trauma and forced removal of children continue to marginalise communities (Attwood 2001; Cunneen 2019). This marginalisation extends to the use of inappropriate assessment tools, required for assessing eligibility to NDIS, that fail to consider the cultural context and experiences of First Nations individuals, reinforcing the notion that Aboriginality itself is a disability (Cooms, Muurlink, and Leroy-Dyer 2022, Gilroy et al. 2016; van Toorn and Scully 2023). The Australian Psychological Society (APS) has acknowledged its role in contributing to the mistreatment of First Nations peoples and issued a formal apology in 2016 (Dudgeon et al. 2020; Gilroy et al. 2016). Despite this, van Toorn and Scully (2023) report on a parliamentary inquiry into independent assessments and highlight concerns regarding the inappropriate design of assessment tools used to determine eligibility for NDIS and their lack of cultural appropriateness for Aboriginal and Torres Strait Islander peoples, as well as individuals from culturally diverse backgrounds. They highlight the lack of scientific objectivity in the independent assessments used by NDIS and the ongoing dominance of western norms and discourses of disability particularly for individuals who may not be accustomed to discussing disability in ways that align with assessment criteria. They argue that there is a need for culturally appropriate measures of disability that can effectively translate to the lived experiences and contexts of Aboriginal and Torres Strait Islander peoples.

Other research (Baldry et al. 2016) highlights a type of hyper-visibility that occurs for First Nations peoples with disability that results from racial identity and disability related behaviours. This hyper-visibility occurs in the context of systemic, acute and pervasive racism and discrimination and leads to misinterpretation of behaviours and punitive responses by non-Indigenous individuals confronted with the intersection of race and disability (Avery 2018). The combination of hyper-visibility, misinterpretations and punitive responses contributes to what is known as the school-to-prison pipeline for First Nations peoples who are incarcerated at a rate of over 11 times that of non-Indigenous peoples with an estimated 50% of this population having a disability (Australian Bureau of Statistics 2016; Baldry 2014). Shepherd et al. (2017) found that being Indigenous and experiencing disability is associated with both earlier first police contact and more police contact. The acute and pervasive experience of racism and discrimination for First Nations peoples with disabilites in Australia has led to a phenomenon labeled by Avery (2019) as ‘apprehended discrimination’. Temple et al. (2019) explain that this is “the fear of becoming exposed to discrimination, leading to avoidance behaviours as a form of self protection” (p.377).

Method

This manuscript presents the findings of a qualitative decolonial Indigenist research project conducted by and with the Quandamooka peoples in Australia. Ethical approval for this project was given by Central Queensland University Human Ethics Committee: 0000021246. This required a letter of support from the Minjerribah Moorgumpin Elders in council as well as their involvement and promotion of the project. Decolonial and Indigenist research are frameworks that challenge and disrupt colonial power structures and knowledge systems, centering Indigenous voices, perspectives, and self-determination in the research process (Rigney, 1999; Smith 1999). It aims to address the historical injustices and ongoing impacts of colonisation while fostering a decolonised space for knowledge production and transformation (Kovach 2009). The study aimed to prioritise Quandamooka authorship and provide a platform for Quandamooka voices to be heard in the disability sector. To gather rich and diverse data, a range of research methods were employed, including autoethnography, poetic inquiry, yarning interviews, and a Facebook virtual yarning group (Bessarab and Ng’andu 2010; Chilisa 2012; Foster 2012; Prendergast 2009). Participants in this study included Quandamooka Elders and community members who either had a disability, were caring for a person with a disability or expressed a personal interest in this topic. The involvement of Elders played a crucial role in guiding the research process, ensuring cultural appropriateness, and providing guidance and insight into Quandamooka practices and philosophy. Their knowledge and wisdom contributed to the understanding of cultural contexts and helped shape the research design and methods. Additionally, the incorporation of Quandamooka ontology as the foundation of the research approach allowed for a deep exploration of reality and knowledge from a Quandamooka perspective, honouring the unique worldview and cultural context of the community (Martin 2003).

The use of a Facebook virtual yarning group provided a platform for participants to engage in discussions and share their experiences related to disability, the virtual nature of the group allowed for flexible participation, accommodating the diverse schedules and geographical locations of participants. This approach leads to more breadth than depth of data and is recommended to be used in combination with other methods of capturing data (Walsh et al. 2021). Indigenous autoethnography, as a method, enabled the researcher to explore their personal experiences as a Quandamooka community member and carer, providing an in-depth understanding of the lived experiences within the community (Bishop 2020). By reflecting on their own experiences, the researcher was able to gain insights into the unique challenges and perspectives of Quandamooka individuals and families. Throughout the project, poetic inquiry was employed to share the voice of Quandamooka author, poet and activist Oodgeroo Noonuccal. Poetry allowed for the inclusion of emotional intensity and promoted a different way of thinking about the research findings (Foster 2012). The use of poetic inquiry aligned with the oral traditions of First Nations peoples and serves as a powerful means of sharing Indigenous voices and experiences (Chilisa 2012).

In terms of recruitment, the research approach followed a snowball purposeful sampling method, relying on existing kinship connections within the Quandamooka community to reach potential participants. Leighton et al. (2021) warns researchers using social media risk developing a sampling bias in which they have a false sense of a comprehensive population sample as social media excludes large sections of society that do not participate in these platforms. Further, they argue that this platform will lead to the privileging of participants who are frequent users and minimise the participation of people who are infrequent or occasional users. To reduce this risk the project was also advertised via Elders word of mouth and publication in their monthly community newsletter. This approach ensured cultural compatibility and facilitated trust and mutual respect within the research process (Leighton et al. 2021; Suri 2011). By utilising pre-existing kinship networks, the recruitment process prioritised connections to Country and protected the group and knowledge (Smith et al. 2021).

Data analysis

Thematic analysis, a widely used qualitative data analysis method (Clarke and Braun 2017), was employed in this project, involving data collected through autoethnography, poetic inquiry, yarning interviews, and a Facebook virtual yarning group. The data underwent six stages of analysis aligning with the approach proposed by Nowell et al. (2017). This resulted in the identification of three main themes: disability is not other; custodial ethic; and the system is disabling, highlighting the significant role of Elders, Aunties and Uncles in providing support. The research questions explored positive and negative stories about disability, the impact of ongoing colonisation on disability and Quandamooka culture, the utilisation of tribal knowledge to navigate systems and factors important to the Quandamooka community in providing care and having their needs met. The data provided insights and answers, revealing positive stories of acceptance and cultural connection, negative stories of challenges in accessing services, trauma and exclusion, the impact of colonisation, and the importance of collective caring and cultural connection in navigating systems and meeting needs.

Quandamooka caring principles

Quandamooka culture embodies a distinct and transformative cultural paradigm that challenges prevailing individualised support systems, opting instead for a profound reconnection to ancestral heritage and the advocacy of collective care and protection. This approach stands in stark contrast to mainstream practices, as Quandamooka participants firmly reject western caring practices including institutionalisation, drawing wisdom from the experiences of their community members. At the heart of this rejection lies a profound commitment to re-establishing cultural practices guided by custodial ethics, while ensuring universal access to support, irrespective of disability diagnoses. Central to Quandamooka culture is an all-encompassing ethos that celebrates the diversity of all living beings, including those with disabilities. Within this cultural context, the values of sharing and caring serve to unite the community, aiming not to segregate but to extend inclusivity, making every individual feel embraced, protected, and valued. This section will delve into the foundational principles that form the core of Quandamooka’s conceptualisation of disability, inclusion and protection, exploring key aspects such as collective protection, custodial ethics, collective wisdoms and the integrated understanding of disability as an essential aspect of human connection and life. Through an exploration of these principles, we gain profound insights into a unique and culturally grounded model for approaching disability care and fostering an inclusive and compassionate society.

The value of culture

It’s a bit about you and your place amongst others, it’s the same thing in our languages and songs, there are very few words for ‘I’ but there’s lots of words for ‘us’ or ‘me with you’. It’s rarely I or me alone. In this way the responsibility for protection was spread over everyone. (Elder 1)

The Quandamooka Elder who shared this knowledge was explaining how every part of Quandamooka culture was designed for inclusivity and collective protection right down to the way language was used.

I love being near family and culture on Country… Sharing and caring is at the top of our culture… (Nunko)

Culture is important for us, the groundedness it gives is paramount for well being. (Nundgily)

These community members express something that the data frequently shows: a joy in connection, wrapping family, culture and Country into a single cluster that expresses a sense of connection and a driver for well-being. ‘Sharing and caring’ is a part of culture for Quandamooka people and is inclusive of Country and all that dwells there.

Its important that we allow people with disability choice and control but we need to ensure that Mob get access to culture. Culture is important to everything. (Nareeba)

This statement from a Quandamooka community member highlights the significance of accessing culture for Quandamooka people with disability.

…help with keeping Culture alive for the wellbeing of all mob but we need to talk about this… It’s harder to access our culture when you live with a disability… I don’t know how NDIS can help with keeping culture alive for the wellbeing of all mob, but we need to talk about this. (Nunko)

This community member is reflecting that disability does make it harder to access culture, this is often attributed to the impact of colonisation. Additionally, there is a desire to use NDIS to reinvigorate cultural practices to improve access to culture linking the wellbeing of people with disability to the wellbeing of the whole community.

The statements shared here portray the deep-rooted inclusivity and collective protection embedded in Quandamooka culture, as demonstrated by their language and cultural practices. The joy and well-being derived from connections to family, culture, and Country are evident among community members, emphasising the significance of sharing and caring as integral aspects of culture. However, the impact of colonisation has made accessing culture harder for Quandamooka people with disabilities, leading to a call for using NDIS to reinvigorate cultural practices and improve overall community well-being and the capacity to respond to the diverse needs of community members.

Quandamooka conceptualisation- disability 3 ways

I wouldn’t say they were actually handicapped, but I suppose in their own way, they were – in white society. They could excel in our culture. (Elder 2)

People are supportive in their own way, but they need more awareness. They see disabled people with heart or lung problems and some might say he drank too much, done this or that. But when it comes to babies with disabilities, some would understand that because it happened to them. (Elder 2)

According to this Elder and the experiences of Quandamooka peoples, disability is perceived in three ways: born with, acquired or created systemically. The first category includes disability that a person is born with or develops later in life at no fault of their own and is met with understanding and empathy, such as Autism, Down Syndrome or Multiple Sclerosis. The second category refers to disabilities acquired through lifestyle choices or individuals actions, which may receive less empathy, especially if the disability is a result of actions that have also harmed others, like drink driving accidents. The third category, systemically created disability, is attributed to ongoing colonisation, transgenerational trauma and intersectional racism and discrimination in western society, leading to disadvantage and disabling conditions.

Disability as a part of life and essential for connection

It was big shame if you hurt someone with a disability, you would be punished. Anyone with a disability was given respect always because they gave in ways others couldn’t. Diversity is good for mob, it keeps us true to our oneness. (Nunko).

When I think back, I remember my mum’s uncle was deaf and he was included and accepted the same as everyone else (Toompi).

Disability like people are all different and everyone needs specific treatment to make them feel special or accepted. Basic human trait. Never changes just way we view human is what changes. Yes, disability needs to be acknowledged but not separated. Coz they are no different to me you or my neighbours. They need things to help them like I do. They need support services like I do. Just not always the same. (Treppen).

The quotes from Nunka, Toompi, and Treppen align with existing literature on the inclusive and accepting attitudes towards disability within Indigenous cultures, including the Quandamooka community. Previous research (Ariotti 1999; Avery 2019) has highlighted that there is no First Nations word for disability and that Aboriginal cultures are inherently inclusive of disability (Avery 2019; King, Brough, and Knox 2014; Velarde 2018). This is reflected in the perspectives shared by the Quandamooka community members, where disability is considered a normal part of life with individuals with disabilities valued for their unique experiences and contributions. The statement from Nunka about the shame of harming someone with a disability and the respect given to individuals with disabilities echoes the idea that disability is considered sacred within Indigenous cultures (Avery 2019; Velarde 2018).

Disabilities are seen as a source of unique gifts and abilities, and individuals with disabilities are valued for the ways in which they can give and contribute to the community. The emphasis on reciprocity and sharing as essential components of Indigenous cultures (Lawlor 1991) further reinforces the idea that disability is integrated into the fabric of Quandamooka life. The perspectives shared by Toompi and Treppen also reflect the collective responsibility and community approach to supporting individuals with disabilities. This is consistent with the literature on the communal nature of caregiving and the importance of inclusive practices within Indigenous communities (Avery 2019; King, Brough, and Knox 2014). Overall, the quotes from the Quandamooka community members align with existing literature, highlighting the inclusive and respectful attitudes towards disability within Indigenous cultures and emphasizing the significance of culture in fostering wellbeing and connectedness for all members of the community.

Collective wisdoms

Handed down over thousands of years, these wisdoms are the accepted and established ways of knowing, being and doing that we enact to protect country and kin. Captured in stories from the dreaming and shared here to provide us with a glimpse into the worldviews of the oldest living culture whose practices centre the concepts of sustainability and inclusion. Using these stories as a glimpse into the practices of caring our ancestors fostered, these dreaming stories help to shape and inform our collective wisdoms in relation to caring and disability. The story of Dimboona and Wail Rock dates to long before colonisation, suggesting that Quandamooka people practiced inclusion sustainably prior to the imposition of colonial ways of knowing, being and doing. Drawing on dreamtimes stories can show us how country can teach us and instruct us to care for each other:

Long long time ago in the dreaming there was an old woman who was mute, her name was Dimboona. It was forbidden for anyone to hurt her because of her disabilities. Now at this time she was following the hunters always and they were unable to catch food. So the head man had her restrained to a rock. Two young men were asked to stay and look after her. Now some time had passed and a big storm come outta nowhere, the young men ran and took cover. When they returned, they had found that the rock that Dimboona was tied to had broken and fell into the sea. Dimboona was still there. They tried to get to her but with no avail, they tried to throw her food with no luck. Dimboona slowly died on that rock wailing and wailing till she passed. Now every time those same winds come, because of the blowhole it gives off the eerie sound of her wailing and the old people say that it’s the spirit of Dimboona to remind us to always look after each other.

This story was shared by the Quandamooka people and is a reminder that all people are important and must be cared for to the best of our abilities. It is a collective responsibility for the people to provide protection and care, as well as adapt to accommodate other’s needs. It is interesting to note that the dreaming stories focus more on the practice of caring rather than a focus on needing care. When yarning with participants, the focus of many conversations was on the responsibility to provide care rather than a focus on disability itself.

Disability like people are all different and everyone needs specific treatment to make them feel special or accepted… They need things to help them like I do. They need support services like I do. Just not always the same. (Treppen).

People with disability were never any trouble for us. The Aboriginal way was to just keep going and look after the(m) (Elder 2)

This statement taken from a community member and an Elder not only normalises need, it focuses on the provision of care rather than on being disabled, a need for care is an accepted universal experience but the type of care may differ. Like caring for Country, caring for kin is a foundational aspect of Quandamooka culture in which all peoples are responsible and all are included.

Custodial ethic

The custodial ethic, as discussed by Graham (1999), is a profound concept rooted in the belief that all things are considered equal, autonomous, and protected through the wisdom of the collective. Loughrey (2020, p.2) describes the custodial ethic: ’It is a reciprocal relationship in which we understand the web of inter-relationships binding and holding us to one another and to the Country itself’. It is learned and reinforced through continual engagement in actions, particularly in caring for and sharing with Country. This ethic fosters a deep connection and responsibility to something outside of the individual, specifically to the land and community, until sharing and caring is the norm, embedding inclusivity and protection for all beings and aspects of life. The custodial ethic draws knowledge from the intersection of culture and Country, with teachings on sharing and caring embedded in the land itself. It places the responsibility for protection on both the group, rather than solely on an individual, emphasizing the significance of collective care and well-being of the community and Country.

The onus is on the group to maintain protection, these is no one person responsible for protection… we have instead the protection of the group and that extends to mob and to Country… (Elder 1).

We need to step back from the greed and poison that comes with colonialism and change our way of thinking from ‘me’ to ‘us’ (Elder 1).

Remember, you live in this Country, it grows you. You are now a part of its dreaming; I look forward to the day when all our mob are connected and the circles are in full swing again just like before Cook (BC). Then all races can learn lore so as to be one again (Nunko),

We don’t need these bureaucracies, these systems. What we need is the strengthening of tribal ways (Elder 1).

The quotes presented here shed light on the relevance of the custodial ethic to disability and the collective approach to well-being. Elder 1 highlights the need for collective protection, where the responsibility extends to both community (mob) and the land (Country). This emphasis on collective care aligns with the custodial ethic’s principle of inclusivity and protection for all. The call to shift from an individualistic mindset to a collective one reflects the transformative power of the custodial ethic in fostering a caring and inclusive society. The mention of ‘strengthening tribal ways’ by Elder 1 underscores the custodial ethic’s potential to revitalize and reinforce cultural practices, which promote well-being, sharing and inclusivity. Embracing these tribal ways can lead to a more harmonious relationship with the land and each other, supporting the custodial ethic’s core values. The reference to the time before colonisation (before Cook) by Nunko carries the vision of returning to a state where all people learn lore and come together as one. This aspiration aligns with the custodial ethics emphasis on equality and protection for all living beings and communities, transcending cultural, racial and human/non-human boundaries. Moreover, the rejection of bureaucracies and systems in favor of tribal ways underscores the custodial ethic’s emphasis on collective wisdom and community responsibility. This perspective advocates for a more inclusive and caring approach to disability and well-being, rooted in cultural practices and shared values.

The 3 pillars of wellbeing and collective protection

Research by Avery (2019) and Loughrey (2020) collectively elucidates the role of culture, Country and kin in providing inclusion and protection for many First Nations peoples with disabilities, countering the pervasive experiences of racism and discrimination within Australian society. This collective protection is cultivated through a custodial ethic of sharing and caring by the three pillars presented above: Country, culture, and kin. Loughrey’s (2020) work provides further insights into the custodial relationship between people and Country where the interconnectedness with Country encompasses a reciprocal relationship with kin, with the community caring for the land and all who inhabit it, and the land providing for the communities needs. Culture then provides us with the guidance to know what relationships and responsibilities exist between each pillar and at the individual, family and community levels. The custodial ethic of caring and sharing, deeply ingrained in Quandamooka culture emerges as the foundation of a collective system of protection and care. Collective protection, as observed in this community, refers to the safety created when all members of the Nations group actively share and care, reflecting central themes within the culture. The cultural understanding of a reciprocal relationship between individuals, community and Country reinforces the Quandamooka communities’ commitment to collective responsibility for protection, wherein all members actively share and care for one another. The foundation of collective protection rests upon the interconnectedness between individuals and the family and community, with the group representing an individual and vice versa. Connection is the basis on which reciprocity and collective protection is activated, through this we know what relationships exist and our individual and group responsibilities in those relationships to ensure reciprocity is maintained and all are protected. This complex collective relational system requires ongoing open dialogue with the environment, including the people, water, trees, rocks, creatures, and skies. You may well ask how to have a dialogue with a rock or tree, the reality of is that they communicate in unexpected ways and requires deep listening and observation. For example, a rock beside a river may tell us that it is shelter to many creatures and needs to stay where it is to maintain the integrity of the riverbank. Culture reduces the separation between Country and people, and Country gives us the framework for the people (Graham 1999).

The circles

The old people always led me to believe that disability was a part of life, it was accepted and people were protected through our Elders groups and the men’s and women’s groups (Nunko).

A lot of my cultural knowledge came from outside my immediate home at Nan and Pop’s house and their way of life and other aunties and uncles in the community (Nundgily).

…I grew up with more than one mother and always had the aunties and uncles pulling me in line… (Toompi).

An aunty or uncle is someone who I trust and respect. Who I feel looks out for me or would care for me. Who is a role model for people in the community, does a lot for others. (Toompi).

The text highlights the critical role of Elders, aunties, uncles and the kinship system within Quandamooka culture in creating collective care and fostering inclusivity, including individuals with disabilities. These respected community members, as well as the kinship structures, hold the collective wisdoms and act as knowledge holders, lore practitioners, and interpreters of culture and County and its significance for people with disability has been recognised in previous research (Larkin-Gilmore, Callow, and Burch 2022). The circles, representing collective leadership and collaborative reasoning, empower the aunties, uncles and the wider kinship networks to ensure the well-being and protection of the entire community. Disability is viewed as an integral part of life, and the responsibility for inclusion and protection is shared among the kinship groups, with the men’s and women’s groups playing significant roles in safeguarding individuals with disabilities.

Quandamooka people believe in whole-community responsibility, where the protection and well-being of all members, including those with disabilities, are collectively ensured through the kinship systems. The kinship systems serve as a guiding framework for nurturing and supporting one another, creating strong bonds of care and mutual aid within the community. The disruption caused by colonisation has impacted these kinship practices, leading to challenges in maintaining well-being, the impact of transgenerational and collective trauma stemming from colonial practices is a well-recognised phenomenon (Atkinson 2002; Krieg 2009). None the less, the importance of Elders, aunties, uncles and the wider kinship networks in maintaining sustainable inclusion and providing support, education and protection for individuals with disabilities is integral for self-governance and the preservation of cultural heritage and the protection of Country and kin. Testimonies from community members reaffirm the significant influence of the kinship networks as trusted and supportive entities that care for and protect one another. The kinship systems act as a cohesive force, bringing people together and fostering a sense of belonging and responsibilities to care for all members, including those with disabilities. Their involvement in various aspects of peoples lives reflects their dedication to maintaining connectedness, inclusivity, and protection for individuals with disabilities and the entire community. Overall, the collective efforts of Elders, aunties, uncles, and the kinship systems work synergistically to create a culture of care and protection that embraces and supports all members of the Quandamooka community, promoting inclusivity and well-being for everyone.

Global indigenous disability themes

Research around Maori perspectives on disability (Bevan-Brown 2013) aligns with the themes identified in the Quandamooka community. Specifically, Bevan-Brown reports that within their Maori participants there was a trend towards inclusive attitudes and practices and that inclusion is a core Maori value. Participants reported acceptance and valuing of people with disability in Maori communities. Bevan-Brown argues that inclusion of Maori values and practices would result in greater inclusion of all people with disability regardless of ethnicity but also warns that a single Maori viewpoint on disability cannot exist because of diversity across groups.

Artifact

The poem shared below was written in response to the yarns in the research project. It captures the researchers experience as a member of the Quandamooka community and of the yarns and literature to share an Indigenous perspective of the research using poetic inquiry (Manathunga et al. 2020).

Too fast

This life is a race

I missed the starting gun

Behind the pack

I see those in front and those behind.

And I can’t catch them

Don’t want to pay the tithe to belong here

Alone in a room full of sharks masked as people

Trying to prove they are worthy of it all

How are they not lonely?

Sharks circling and no one has your back

There is no room for love and kindness in this race to the end

Can I quit?

Go quietly into the darkness?

Away from the masses

Be the strange one who doesn’t fit?

Be the one who leaves the sadness behind?

Pigeonholed to within an inch of my life

There is no fit for anyone

So they break me and shape me to what they want

I don’t want to run this lonely race anymore

Skipping along the edges of the track dodging entrapment

Standing on the fringes, tempted to take every scrap

so that my babies know ‘a better way’

But if I take it all what is left for the rest?

How can I shift my loneliness and struggle to those behind me?

Those I would call brother and sister?

My soul sings a song of freedom and peace.

A blood memory that whispers through my veins.

of different ways

No fear, no loneliness, a dedicated togetherness

that extends to all

The sharks can come

None will succumb

none will falter and fall

The loneliness disappears into the togetherness where the goal is for us all.

So I check out, I check in

And I let the poison of greed wash over me

Dream of a world where the race is never started

and we sit at peace under a tree and

share the fruits of our love and togetherness

They tell me to plan, make a dream, set a goal.

I don’t want what you think.

A dream of a revolution of kindness

A place for my soul to rest

A place to belong

Connected to the past and the future I sit in my harmony

No goals, no dreams, pleased by the present,

warming myself with the kindness of those surrounding me

No races

No places

Just together

Conclusion

The NDIS operates within a context for First Nations peoples that includes high rates of disability and low rates of service access, relying on a western frame of reference that can not respond to the backdrop of ongoing colonisation, inherited inequality and intersectionality. The Quandamooka culture offers a transformative and profound approach to disability care and inclusivity, challenging the prevailing neoliberal individualised support systems of Western societies. At the heart of this cultural paradigm lies a commitment to reconnecting with ancestral heritage, advocating for collective care, and protecting all living beings, including those with disabilities. The Quandamooka community firmly rejects institutionalisation and neoliberalism and instead embraces a custodial ethic rooted in reciprocity, sharing, and caring for Country and kin. The research reveals that disability is conceptualised in three ways within the Quandamooka community: as a natural part of life (born with), a result of individual actions (acquired), or as a consequence of systemic oppression (created systemically). This multi-faceted understanding of disability informs their inclusive and accepting attitudes, valuing individuals with disabilities for their unique contributions.

The pillars of Country, culture and kinship form the foundations for collective protection and wellbeing in Quandamooka society. Elders, aunties, uncles and the wider kinship networks play crucial roles in ensuring the inclusivity and support of all community members, including those with disabilities. Their collective wisdom and custodial ethic guide the community in caring for each other and the land, fostering harmonious relationships that transcend individual boundaries. The Quandamooka culture offers valuable lessons for global Indigenous disability themes, showcasing the potential for inclusivity and care within diverse Indigenous communities. By incorporating Indigenous values and practices, societies can move towards greater acceptance, protection, and support for individuals with disabilities, fostering a more compassionate and inclusive world.

Disclosure statement

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