'E kore e hekeheke he kākano rangatira' – I will never be lost for I am the product of chiefs
Building understanding to support our mahi
Whai mātauranga is the practice framework domain that focuses on the pursuit of knowledge and understanding. This includes the mana-enhancing paradigm, partnering to build understanding, and knowledge and research.
When working with disabled people, we need to have an understanding of their inherent rights, the mātauranga (knowledge) that informs us and contemporary issues for disabled people and the disability community. This guidance, and the following prompts, will help us reflect on and develop our knowledge and understanding:
- What experiences have I had of disability professionally and personally that could influence my practice when working with disabled people? How does my experience sit alongside the mātauranga (knowledge) that informs our practice with disabled people and in particular tāngata whaikaha Māori?
- How do I partner with the whānau or family I am working with to build a deeper understanding of their lived experience of disability? How do I understand their vision of oranga (wellbeing) for their tamaiti or rangatahi and whānau or family?
- How am I recognising the strengths of the disabled person and supporting them to build on these strengths and develop their potential?
- How am I modifying my own practice style, approach, language and application of tools and resources to the unique needs of the disabled person I am working with?
- What are my knowledge gaps? If I feel out of my depth, who can help me to develop my knowledge?
How we understand disability
While there are many ways of understanding disability, our practice operates within a human rights framework, recognises a holistic view of oranga (wellbeing), and is informed by an understanding of Whānau Hauā and the Social Model of Disability. We recognise and understand traditional te ao Māori knowledge and wisdom and Pacific world views of disability.
Ko wai au? Who am I? While models of disability and concepts of oranga provide us with knowledge and understanding, it is crucial that we seek to understand from whānau hauā (whānau affected by disability) their lived experience of disability. We listen to and value the stories, voice and worldviews of disabled people and their whānau or family and this will help us to understand and respond. Working toward oranga means partnering with whānau or family to understand their individual and collective strengths, hopes, ideas, goals and concerns.
A human rights framework provides us with the clear requirement that we act in ways that ensure the rights of disabled people, and in particular tāngata whaikaha Māori, are protected and reinforced.
Holistic view of health – an understanding of oranga
Te ao Māori concepts of health don’t distinguish between health and disability. The concept of oranga is better understood and is a relationship between whānau or family and their social and physical environments.
Within Oranga Tamariki, oranga is a way of thinking about how we respond effectively to the holistic wellbeing of disabled tamariki and rangatahi. We need to understand that:
- oranga is different for all whānau or families
- oranga is a relationship between whānau or families and their natural, physical and social environments and values and beliefs
- oranga is not a finite destination, but is fluid and ebbs and flows over time
- oranga is multi-dimensional
- oranga is inclusive, embracing diversity and context.
There are 6 interconnected dimensions of oranga that, if in balance, contribute to optimal experiences of oranga. We understand oranga as an holistic and inclusive concept embracing multiple dimensions of wellbeing that encompass ngākau – emotional wellbeing, wairua – cultural wellbeing, whānau – family wellbeing, tinana – physical wellbeing, waiora – environmental wellbeing, and hinengaro – mental wellbeing. Oranga represents a holistic view of self, health and disability.
While all aspects of oranga are important, the relationship between an individual’s impairment, their whānau or family and the environment in which they live means the whānau and waiora dimensions of wellbeing are particularly important to consider when working with disabled people.
Whānau or family is central to the notions of oranga and this is reflected in the Whānau Hauā model discussed below. This recognises that the consequences of disability extend beyond the individual to the whānau or family, who are a source of strength and resilience and may have their own support needs, while valuing the attributes and contributions made by tangata whaiaka and all whānau members. It highlights the importance of collective (whānau or family) wellbeing to strengthen whānau or family resilience and includes supporting the development and maintenance of healthy whanaungatanga networks.
The notion of waiora encapsulates the importance of the environment in which we live and that significantly impacts on the health and wellbeing of individuals, whānau or family and communities. 'Waiora' literally refers to water, both as a resource and as an essential part of the environment that provides sustenance for life. This dimension of oranga includes understanding the natural, physical and social environments in which whānau or family live, the systems operating within those environments, and their impact on tamariki, rangatahi and whānau oranga, autonomy and participation. It includes advocacy for the rights of tamariki/mokopuna, rangatahi and whānau, supporting them to identify barriers (for example, accessible housing and transport, and communication barriers) that prevent full inclusion.
Informed by te ao Māori, Whānau Hauā provides a Māori perspective on disability, drawing on a holistic worldview that focuses on the collective. Whānau Hauā acknowledges the impacts of ongoing colonisation and contemporary influences that are oppressive and discriminatory to tāngata whaikaha Māori.
Whānau Hauā sees disability as a collective endeavour of both the individual and the whānau as a whole. It contextualises a disabled person within a whānau and focuses on relationships and interconnectivity between the individual and group’s wellbeing, participation, cooperation, functions and operation.
The Whānau Hauā model also addresses the impact the tangata whaikaha Māori can have on their whānau as well as the impact whānau has on the tangata whaikaha Māori. In this way the disabling society experienced by tāngata whaikaha Māori is experienced by their whānau and the strengths and resources of the whānau are available to the individual and the whānau collectively. Responding to the needs of tāngata whaikaha Māori requires an understanding of the whānau strengths and resources and responding to the needs of whānau as well.
In addition to a collective orientation, Whānau Hauā views whānau within their whakapapa and with an oranga framing.
'Disability is positioned within a person’s background, coming to the forefront in times of need and compromised ability to achieve or undertake necessary activities. Whānau hauā manage disability as part of their daily life rather than it being central to an individual’s identity or everyday life.'
Whānau hauā are driven by a collective effort and the cultural obligations and responsibilities that whānau members have to each other and the whānau as a whole.
Te Ao Māori
Tāngata whaikaha Māori have experiences and challenges non-Māori do not, related to the impacts of ongoing colonisation and contemporary influences of multiple intersecting forms of oppression, including discrimination arising from racism. Western views of disability have had a significant impact on tāngata whaikaha Māori, who need to be considered within the wider context of colonisation and the disabling effect of people losing their land, language and cultural connections.
Te Ao Māori traditional views of impairment
Māori creation stories are the kōrero (spoken words) about origins that provide accounts of human whakapapa (genealogy), including the whakapapa of all living things, animals, trees and mountains – or, in other words, te taiao (the environment). Creation stories influence many aspects of the Māori view of the world. The atua (gods) who shaped the natural world, for instance, are seen as role models for human behaviour.
Atua with impairments existed in Māori creation stories and the wider mythology. It appears that, in the ancient world, Māori who had impairments were people with godlike power and status. They were known for the talents that they possessed, not for what they didn’t have. For example, in some mythology, kāpo (being blind) was not a disability but a tohu (sign) of greatness. Being kāpo was their source of power because they couldn’t rely on all of their senses and had high levels of ability in the senses that they did possess.
More recent views of impairment
As time progressed, this positive notion seems to have changed. Instead of being held in high esteem as valuable members of a hapū and iwi, Māori who became ill, who were born unwell or who had a disability were perceived by the hapū as a tohu or outcome of an infringement of tapu. With colonisation and Christianity, and with the introduction of influenza, measles and other diseases, the Māori view about birth defects and disability appeared to change and bring shame to the hapū.
Historically, western-based services have not only been unresponsive to Māori, but some would argue they have also been destructive. Services consistently dismissed Māori cultural preferences – for example, the impact of institutionalisation on Māori with intellectual disabilities and their whānau. For tāngata whaikaha Māori, culture and health are closely linked and the forced separation of tāngata whaikaha Māori from their culture has had significant negative impacts for both the individual and whānau.
Pacific cultural perspectives and attitudes to disability
Pacific peoples make up a growing proportion of our country and of the disability community. Understanding the diversity among Pacific peoples is a key part of having respectful and effective relationships with Pacific disabled people.
When working with Pacific children and families with disability, cultural world views, practices and protocols need to be respected and the special role of family in Pacific culture and community needs to be valued and supported. Given that the Pacific population in Aotearoa New Zealand is always changing, cultural world views, beliefs and values are likewise diverse and evolving.
There are a number of services devoted to supporting Pacific families with lived experience of disability, including Tōfā Mamao, a collective of tagata sa’ilimalo in Aotearoa New Zealand. Tagata sa’ilimalo (tagata = people or person, sa’ilimalo = pursuit of success) is a term of identity that can be used for Pacific disabled people and their family and carers or supporters.
Great strength, connection and resources sit within a Pacific identity that values family and collective wellbeing. For most Pacific peoples, āiga, kāiga, magafaoa, kōpū tangata, vuvale, fāmili, family is most valued and central to a resilient community and way of life. Family provides identity, status, honour, prescribed roles, care and support. It embodies the Pasifika world view that an individual represents not only the person but his or her family collective, community and heritage. Because of this, Pacific disabled people are often cared for and supported by family members and carers who may be extended family members or trusted people from their wider community. Care is often provided in their own home with limited access to formal supports. While this can provide a strong sense of support and connection, it can also put increased pressure on family that needs to be considered when working with Pacific children and families with disability. Supporting Pacific families to access culturally appropriate supports and resources is an important consideration.
The diverse Pacific cultures have various ways of defining and understanding disability. Many Pacific people, like the general Aotearoa New Zealand population, understand disability from a medical perspective, where a disabled person is one who has a physical, sensory, cognitive or intellectual impairment.
However, some Pacific people identify different reasons for disability, which may be religious (for example, disability as a punishment from God) or culturally based (for example, disability as a curse due to a family transgression). In addition, certain words denoting disability in Pacific languages have negative connotations. For example, in the Samoan language, a blind person is commonly referred to as ‘tau aso’, meaning ‘your days are numbered’. When disability is viewed through these lenses, the fanau (family) may experience discrimination within their community and be reluctant to seek support.
Discrimination can come from all parts of the Pacific community, including the church, and stems from the notion that disabilities are linked to divine punishment. The church plays a major role in the life of most Pacific families and is often a centre of support, so it can become a source of distress or embarrassment for many disabled individuals and their family.
Pacific disabled people hold multiple identities (for example, being Pacific, female, rainbow, disabled), and while this provides many sources of strength and connectedness, it also means the intersection of their marginalised identities can compound their experience of disadvantage and discrimination. When combined with low socio-economic status, this can further marginalise them from participating in and accessing disability services.
Safeguarding disabled tamariki and rangatahi involved with Oranga Tamariki
Disabled tamariki and rangatahi are more likely to be abused or neglected than their non-disabled peers, and they are more likely to be seriously injured or harmed by maltreatment. While no single risk factor indicates that a tamaiti or rangatahi will necessarily be the victim of abuse or neglect, research reveals that disabled tamariki and rangatahi face an assortment of factors that place them at higher risk of maltreatment than non-disabled tamariki or rangatahi. These include:
- tamariki or rangatahi and disabling factors such as limited ability to protect self or to understand what maltreatment is, reliance on caregivers for support with their daily needs, placement in isolated environments, barriers to communicating that harm is occurring or feelings of isolation and powerlessness that prevent tamariki or rangatahi from reporting harm
- family or parental factors such as stress and physical health, lack of support, family functioning and poverty
- societal factors such as isolation and discrimination.
While harm can occur in a number of contexts, these factors are sometimes deliberately exploited by predatory adults, who target disabled tamariki and rangatahi because of their increased isolation and vulnerability.
A focus on strengthening and supporting protective factors for disabled tamariki or rangatahi can mitigate or eliminate their increased risk of harm. These protective factors include:
- parents being willing to engage with services and practitioners
- a deliberate focus on the strengths of tamariki or rangatahi and their whānau or family
- tamariki or rangatahi and whānau or family being connected and supported by wider networks of family, whānau, hapū and iwi.
We also need to consider how to safeguard disabled tamariki and rangatahi we are working with and who are currently being supported in community and residential settings.
Rangatahi who are neurodiverse (for example, who experience learning differences, attention deficit hyperactive disorder (ADHD), autism spectrum disorder (ASD) or fetal alcohol spectrum disorder (FASD)) are overrepresented in care and youth justice systems. Once in the youth justice system, these rangatahi have increased vulnerability due to issues with comprehension, literacy, auditory and visual perception, memory, and inability to understand cause and effect and consequences. The ‘invisible’ nature of neurodiversity can mean there is misunderstanding about what some of their behaviour means and how well they have understood what is happening for them within the youth justice process. An awareness of the prevalence of neurodiversity among the tamariki and rangatahi we support is important mātauranga (knowledge) that needs to inform our practice.
Parents and caregivers of tamariki and rangatahi involved with Oranga Tamariki experience a range of issues, including impairment and disability issues for the parents themselves. Parents with lived experience of disability have a right to parent and our work with them needs to recognise, enable and support that right. When working with parents or carers with lived experience of disability, we need to balance the human rights involved.
'the child's rights to be safe and to know and be cared for by their parents, with State support, and the parent’s right to family and equal rights under the law.'
How mātauranga (knowledge) informs our practice
What we know and understand informs how we work with disabled people. A sound understanding of disability and of the holistic nature of oranga ensures our practice with disabled people:
- understands and embraces the diversity of the human experience
- recognises and seeks to redress inequities experienced by disabled people, in particular tāngata whaikaha Māori
- acknowledges disabled people and their whānau or family as experts in their experiences and central to understanding their needs, strengths and oranga aspirations – this is reflected in decision-making processes alongside the disabled person and their whānau or family (“nothing about us without us”)
- locates tamariki and rangatahi within their whānau or family, communities and broader social environments and recognises the importance of whānau and family as a source of strength and identity for disabled tamariki and rangatahi
- strengthens whānau and family capability as a whole, supporting whānau and family with knowledge and skills, building leadership and resilience within whānau and family while mobilising the protective capacities of family, whānau, hapū and iwi
- seeks to understand the context of disabled people and their whānau or family, and the interaction between their impairments and disabling environments, with a focus on recognising and building on strengths and responding to support needs, including the support needs of their whānau or family
- ensures, promotes and facilitates the voice of disabled tamariki and rangatahi and their whānau or family in decisions that impact them
- develops skills and knowledge to partner with others to build understanding and advocacy for disabled people – we collaborate with health and disability practitioners, schools, educators and other supports so tamariki, rangatahi, whānau, family and caregivers can access the services and supports they need
- upholds, promotes and advocates for the rights of disabled people and their whānau or family.