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essay on develop a deeper understanding of the complex sociocultural factors and theoretical perspectives around disability, diversity, additional needs and inclusion which impact on the lives of children and the people who care for them

Home / Blog / essay on develop a deeper understanding of the complex sociocultural factors and theoretical perspectives around disability, diversity, additional needs and inclusion which impact on the lives of children and the people who care for them

essay on develop a deeper understanding of the complex sociocultural factors and theoretical perspectives around disability, diversity, additional needs and inclusion which impact on the lives of children and the people who care for them

Essay

Purpose: this task is to enable you to develop a deeper understanding of the complex sociocultural factors and theoretical perspectives around disability, diversity, additional needs and inclusion which impact on the lives of children and the people who care for them.

Assessment details

Respond to the following statement:

In your essay, you are required to reference material from weeks 1 to 3 to support your understanding of the perspectives that add to understandings of additional needs.

Week 1 resources: What is inclusion?

http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4429.0Main+Features12009?OpenDocument

http://cdn.knightlab.com/libs/timeline/latest/embed/index.html?source=0AlN3at1gY02rdFIyVlFtVlVkNWhNVFNfb3VtcUp5a0E&font=Bevan-PotanoSans&maptype=toner&lang=en&height=650

http://fpdn.org.au/10-point-plan-ndis

Negotiating disability and colonisation: the lived experience of Indigenous Australians with a disability

Abstract

Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.

Keywords

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Abstract

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Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.

Keywords

Points of interest

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Disability among Indigenous Australians is a significant problem, but is neglected in disability studies.
The need to decolonise disability among Indigenous Australians has recently been emphasised.
Ethnographic research with participants from an Indigenous Respite Centre, mostly with diabetes-related disability, shows that the sense of being Indigenous is strong, and the impact of being colonised is a core element of lived experience.
Participants used this sense of being Indigenous to negotiate the lived experience of disability in a positive way.
There are greater challenges involved in decolonising disability services, because of a mismatch between governance requirements and culturally appropriate care.

Introduction

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Over several centuries, Europeans colonised a substantial proportion of the non-European world. Although this did not necessarily entail superiority of numbers, it ‘involved structural, cultural, economic and political domination’ (Meekosha 2011, 671) that has shaped the lives of an estimated three-quarters of the global population (Ashcroft, Griffiths, and Tiffin 1989). It has been argued that the dominative processes of colonisation are at the crux of the disablement of Indigenous people around the world (Kapp2011; Meekosha 2011). Hollinsworth (2013) provides a powerful example of this in his overview of the relationship between the brutal history of British settlement of Australia from 1788 and disability among Indigenous Australians. This kind of historical acknowledgement is critical to showing the ways in which frontier violence, dispossession and segregation have disabled Indigenous Australians. Moreover it helps to elaborate the mechanisms by which ostensibly welfare responses to the needs of Indigenous Australians have themselves been a critical component in ongoing oppression and disablement. Yet disability studies as a field has done little to advance understanding of disablement among Indigenous Australians (Hollinsworth 2013). This is troubling given the empirical reality of the scale of disability among Indigenous Australians:

Nationally, 50% of Aboriginal and Torres Strait Islander people [standard government terminology for Indigenous Australians] aged 15 years and over had a disability or long-term health condition in 2008. Around one in twelve (8%) had a profound/severe core activity limitation. Physical restrictions were the most common type of disability reported in 2008, affecting one-third (33%) of all adults and 84% of those with a profound/severe core activity limitation. Nearly one in five people (17%) had a sight, hearing or speech disability. (Department of Health and Ageing 2012, 21)

Such statistics appear to have had little impact within disability scholarship in Australia. This state of affairs is particularly problematic in the context of the prevailing social model of disability that emphasises disability as a social phenomenon. The social and economic inequality faced by Indigenous Australians is acknowledged as critical to understanding health inequality (Vos et al.2009). Yet the positioning of disability within this frame remains unclear. Whilst something is known of the extent of disability, there has been little unpacking of the social trajectory involved in such disablement. There have been only a handful of studies that have addressed the possibility that the construction of ‘disability’ among Indigenous Australians is different to that of non-Indigenous Australians (Ariotti 1997, 1999; Senior 2000; O’Neill, Kirov, and Thomson 2004). This lack of engagement with cultural diversity is not peculiar to Australia but reflects a larger issue at work within disability studies globally. As Meekosha (2011) has pointed out, disability studies regularly assumes a white, western universality, thus ironically imposing a colonial normativity whilst contesting the normativity of non-disabled bodies. Although there has been increasing attention drawn to the existence of this gap in disability studies, there has been little evidence that it is being addressed.

This paper examines the particularities of this gap in relation to the lived experience of Indigenous Australian people living with a disability. The focus on lived experience brings with it a grounded theory approach that seeks to understand how meaning is made. Both the broader context of the participants’ disability and the ways in which they articulate their experience of disability and disability services are examined. The reasons for the invisibility of their disability experience are considered, and in doing so the conceptual/theoretical tools commonly used in disability studies to consider the nature of disablement are revisited. Particular attention is paid to the impact of colonisation discussed by Hollinsworth (2013) in the context of cultural constructions of health and disability. In doing so it is pointed out how the seeming ‘double blow’ of colonisation and disability may be negotiated to contribute to a lived experience where culture and the shared impact of colonisation moderate the experience of disability.

Disability in an Indigenous Australian context

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The European colonisation of Australia from 1788 resulted in the brutal dispossession of Indigenous Australians. In addition to the ravages of diseases to which they had no immunity, large numbers of Indigenous Australians were killed and violently dispossessed (Lake and Reynolds 2008). The Indigenous population declined from an estimated 500,000 to about 100,000 in the 1930s (Taylor 2005), regaining the 500,000 level in 2006 (Australian Bureau of Statistics 2012). Allied to the physical force of the colonisers has been the power to frame understanding of this history using a coloniser’s lens. Thus even the genocidal destruction of Indigenous Australians was re-framed within a discourse of ‘inevitability’. The ‘doomed race’ theory prevalent among European colonisers assumed that ‘the ‘uncivilised’ peoples of the world were ‘naturally’ disappearing to make way for the ‘civilised’’ (Meekosha 2011, 672). Genocide and theft could thus be more conveniently thought of as ‘progress’. This theme of inevitability later played a crucial role in framing the logic of ‘welfare’ responses ostensibly created to assist Indigenous Australians, but which themselves functioned as part of the apparatus of colonisation.

Government ‘protectors’ were appointed to oversee the institutionalisation of Indigenous Australian communities from the mid nineteenth century, but increasingly in the early to mid twentieth century directed the lives of Indigenous Australians: issuing permits to allow them to marry, or to leave the community; banning them from using or teaching traditional language and customs; and providing them as cheap labour to support the growth of surrounding white farming communities (Cowlishaw 2009). Indigenous children were systematically removed from their parents, under the guise of concern for their welfare (Bringing Them Home 1997). More recently, welfare programs for Indigenous Australian communities have once again been re-institutionalised with a colonial intervention mindset including the Northern Territory Intervention introduced in 2007: police and army personnel were sent into Indigenous communities to police a range of paternalistic measures, including alcohol bans, the tying of welfare payments to children’s school attendance and (initially) compulsory health checks for children (Cheng 2007).

Colonisation cannot be neatly separated from the topic of disability either in terms of the forces which produce disablement or the discourses which have enabled a coloniser’s imagination to frame understanding and response to Indigenous Australian disability. Whilst there can be no denying the macro-historical scale of colonisation alluded to above, it also true that it plays out along myriad more localised pathways and that these specificities of colonisation also deserve attention. For example, the phenomenon of diabetes in Indigenous Australia is very much associated with colonisation in terms of its causation and consequently its lived experience. Its prevalence in Indigenous Australia, although quite variable depending upon age, gender and location, is amongst the highest rates in the world (Minges et al. 2011) and is estimated to be somewhere between 10 and 30% (two to four times higher than for non-Indigenous Australians) (de Courten 1998). Diabetes has historical connections to imposed, unhealthy western food and living practices, as well as contemporary social and economic inequalities faced by Indigenous Australians. It is therefore little wonder that it is often experienced by Indigenous Australians as an aspect of colonisation (Thompson and Gifford 2000).

Despite the scale of the diabetes epidemic among Indigenous Australians, the relationship between diabetes and disability as a social experience has attracted very little attention. Yet the biomedical and social potential of diabetes for causing physical impairment and disability is well known. Chiu and Wray (2011) identified that adults in the Unites States with diabetes experience not only higher rates of physical disability but also deteriorate more quickly over time. They found this effect more pronounced for women, non-whites and those of lower education. Despite this well-known linkage between potential complications of diabetes that can lead, for example, to blindness and limb amputation, the episodic nature of diabetes has meant that like other fluctuating conditions such as multiple sclerosis, arthritis, cancer, mental illness and HIV/AIDS, it lacks the stability of more ‘traditional’ disabilities (Boyd 2012). Diabetes sits in a somewhat ambiguous space in terms of disability despite its strong empirical linkage to physical disablement. Thus it is more likely to sit within discourses of chronic illness rather than disability.

Within Indigenous Australian families and communities, diabetes is not only experienced as a chronic condition but also a pervasive one. Its normativity within Indigenous Australia has brought with it a strong set of lived meanings that speak to Indigenous Australian life-worlds (Thompson and Gifford 2000). Within this social space, the experiences of living with diabetes even when associated with substantial disability is at odds with both the universalism of disability studies and the somewhat fixed categorisation of what constitutes disability. There is a complex of multiple meanings at work here. The ‘standard’ dichotomy of social versus biomedical explanation does not grapple with a greater diversity of social meaning among Indigenous Australians. The explanations and meanings attached by Indigenous Australians to disability, or chronic illness, or cultural identity, or simply daily living do not fit with the overarching assumptions of ‘the social model’ any more than they fit with an objectivist medical categorisation (Solli and Barbosa Da Silva 2012). Despite this murky terrain within disability studies, there remains the reality of Indigenous people living with impairment/disability/chronic illness who require support to live. With little research concerning disability among Indigenous Australians, there is little evidence to inform the design and provision of culturally safe services for Indigenous Australians with disabilities (Kendall and Marshall 2004).

The research setting

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The ethnographic research reported here was a component of a larger doctoral research project carried out by the first author (henceforth referred to as ‘the researcher’, a white Australian woman) over a three-year period. The central setting for the study was an Indigenous Respite Centre (a pseudonym) located in Brisbane, a city of two million people and capital of the State of Queensland, Australia. It is one of many centres providing care for people with a disability to give respite to their carers, but one of only a few directed to the needs of Indigenous Australians. The Indigenous Respite Centre receives funding from the Federal Government and therefore is bound by the same regulations as other non-Indigenous services of a similar nature. At the time of the research only one staff member (the driver) was non-Indigenous. Although the day-to-day running is conducted by the manager, there is a board consisting of Elders (respected Indigenous community members). The primary activity of the Indigenous Respite Centre revolves around four different groups of Indigenous Australian men and women (mostly older) that visit Monday through to Thursday. Their disability is often the product of complications of chronic disease, particularly diabetes (type 2). At the time of the research one group included three Caucasian women through marriage or friendship. The centre also provides home help, home maintenance, meals, transport and referrals to other health services including physiotherapy, speech and occupational therapy and podiatry.

The groups varied in size by day of week (roughly six to 12 members, two groups mostly female and two about half male) and from week to week. The base membership also changed during the course of the fieldwork due to people moving from their areas, illness and death, but each group kept a core membership throughout. Group members came from different suburbs on one side of Brisbane and group membership was determined geographically to allow easier transport. While at the centre the clients (as they are called by the staff ) engage in social activities, art and craft, videos, exercises and are taken on outings.

Ethnographic method

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Ethnography allows for a longitudinal study of a group of people in their natural setting (Rice and Ezzy 2000; Sarantakos 2005). The story-based nature of ethnography is also more in keeping with Indigenous cultures where there is a history of oral story-telling.

Over a two-year period the researcher regularly visited the Indigenous Respite Centre, up to four days a week but more often two or three days, in order to fit in fortnightly visits to the homes of three Indigenous women with whom a more detailed ethnographic approach was pursued. A form of participant observation was employed (Spradley 1980; Guest, Namey, and Mitchell 2013). The researcher assisted with the serving of morning tea and lunch, and sometimes with preparation of food. She cleaned up after meals and helped clients cut up their food if they were unable to do so themselves, and also helped on days dedicated to craft activities, including such things as creating hats for Melbourne Cup Day (a horse race celebrated around Australia) and making Christmas decorations. When special events were held the researcher worked as a volunteer. She participated in group recreation including games of cards and dominoes. Immersion in this way is an important element of cultural research (Rice and Ezzy 2000, 160; Guest, Namey, and Mitchell 2013, 77) and gives ethnography its strength and validity (Fetterman 1989, 46). In terms of Guest, Namey, and Mitchell’s (2013, 89) classification of participant roles and activities, the researcher presented herself as a researcher-observer (necessary from an ethical and practical standpoint as a white researcher). However, the process of gaining trust and building rapport meant that the highly participatory activities described above were more consistent with those classified by Guest, Namey, and Mitchell as constituting a less visible research role. In any case, the process was an important way of gaining trust as a white researcher in an Indigenous setting.

More detailed individual ethnographic research was undertaken with three Indigenous women aged in their 60s (as the researcher is female it was more culturally appropriate to restrict this aspect of the research to women). They were known to the researcher as ‘Aunties’ – an Indigenous Australian honorific term that indicates respect for age – and are referred to using the pseudonyms of Auntie Amelia, Auntie Lily and Auntie Liz. Many of the group members and two of the Aunties were experiencing the effects of type 2 diabetes. Auntie Amelia had unstable insulin-dependent diabetes that led to her having mobility problems, especially after a fall, and also problems coping with her activities of daily living, contributed to by arthritis in her shoulders. Auntie Lily had diabetes as well as recovering from bowel cancer. Her gait was often unsteady and she had limited physical strength. Auntie Liz suffered from rheumatoid arthritis, which affected her mobility and her ability to hold, grip and manipulate objects, and had undergone triple bypass heart surgery. None of these scenarios fit easily with the standard assumptions of disability categories. Their association with chronic illness and their lived meanings within an Indigenous Australian context speak to Shakespeare and Watson’s (2001, 19) notion of disability as ‘so complex, so variable, so contingent, so situated. It sits at the intersection of biology and society, and of agency and structure’.

Notes taken in interviews, transcriptions of taped interviews, and diary entries recording conversations, observations and reflections were collated and synthesised. Thematic analyses were conducted throughout the study, firstly guided by initial ideas then modified as the study progressed, a process that is both subjective and reflexive, and consistent with the cyclic research process of ethnography (Spradley 1980; Neuman 1997). This was both an inductive and open-ended process using the grounded theory technique of constant comparison (Heath and Cowley 2004) to focus on the making of meaning by participants. Gaps and further questions were identified during the analysis and followed up throughout the fieldwork.

At the end of the research feedback was given to all individual participants and groups whose members could be contacted and could attend. Permission was sought to publish the findings both at the time of consent and at when feedback was given, and this was granted. A copy of the final thesis was given to the Indigenous Respite Centre.

Disability and colonisation: ‘we’re a race of people that the government has disabled’

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It was remarked earlier, citing Meekosha (2011) and Hollinsworth (2013), that colonisation is disabling of itself, and this emerged from the ethnography in two related ways: the impact of colonisation on the Indigenous Australian way of life that led to disability; and the creation of a category called ‘disability’ where none had existed before. Some example excerpts from the ethnography are cited to emphasise that these themes emerged across the participants in very similar ways.

… Auntie Lily thought this was because of what had happened when white men came. They brought alcohol and changed diets so they moved away from the traditional bush food and had more sugar and flour. She thinks this is why so many Indigenous people are overweight and why there is so much diabetes. She also wondered if this was why cancer was becoming more common in the Indigenous community. She said it was hard to afford a good diet and so a lot could not get food that was good for them and some just didn’t know what was good for them anyway. She thought that maybe a lot of Indigenous Australian people were disabled because of diabetes especially when they were obese and needed to have a leg amputated. (Diary entry, Auntie Lily)

… she [Clara] couldn’t remember anyone being disabled when she was young but could see that there seemed to be more around today and she said that she thought it was because their lives were different now to what they were when she was young. (Diary entry, Group 4)

But years ago we were very much aware that people with Down Syndrome particularly, we had a man who came here, and he came out of institutionalised care, and he was just delightful, and his mother had searched for him, and it’s typical of people being taken away. We’ve seen people who’ve got certificates that say ‘Been taken because …’ and I know someone else who got taken because he had a clubfoot, and our bloke was taken because of his Down Syndrome, and some of them just had certificates marked just ‘Taken because …’ and that’s why people used to say years ago ‘We are disabled because we’re a race of people that the government has disabled, well and truly’. (Transcribed from a recording with Emma, an Indigenous service provider)

These accounts have coherence in strongly connecting current circumstances of health and disability with colonisation. This is paired with a continuing sense of non-Indigenous domination that maintains this disadvantage. Thus in many informal conversations about disability, the underlying source of discrimination regularly came back to racism rather than disablism. Experiences of prejudice were regularly shared by the Indigenous people receiving support at the Indigenous Respite Centre. Overwhelmingly these were not stories about their experience of societal oppression in relation to their disability, but rather they were stories about racism in response to their Indigeneity.

Also clear from the participants was a strong stance that their identification as Indigenous Australians was superordinate, situated above other possible sources of identity and solidarity. Thus being a person ‘with a disability’ – whilst clearly a strong basis for the disability movement internationally – holds much less sway for a people with such intense and damaging experiences of colonisation coupled with a rich sense of their Indigenous Australian identity. Along with statements asserting ‘Indigenous first, disabled second’, it was clear that the capacity to be a part of their local community was a fundamentally important social ‘benchmark’ that lessened the resonance of predominantly non-Indigenous assumptions that drive the broader disability discourse. This was reflected, for example, in Auntie Amelia’s description of the period in her life when she began losing her mobility but immediately followed by the relief that ‘she could still go to Elders meetings because they would pick her up’ (diary entry, Auntie Amelia).

One of the Indigenous Respite Centre disability workers explained their experience of working on a project concerned with disability on a remote Indigenous Australian community in north Queensland:

As a good example, I guess, as we started travelling to remote and isolated Indigenous communities we would make a telephone call and they would say, ‘Oh look, we don’t have anyone here with a disability.’ We would travel to that community anyway, Mornington Island was a good example, and … over the course of a couple of days, from a community that said it had no people with disabilities, we saw about nine to ten people with various forms of disability in their homes. We saw an aged care facility full of aged people all presenting with various forms of age-related disabilities and also two or three people in the Mornington Island Hospital that presented with various types of disability, so perceptions are such that, so I guess initially that they didn’t view these people with a disability, because they were being cared for within the community, you know, for those who were in wheelchairs, they could be wheeled out into the community, they could be taken down to the beach and still do their fishing, or whatever the case may be. (Transcribed from a recording with James, an Indigenous service provider)

The seeming invisibility of these chronic diseases, of which diabetes was the most common, speaks of a world in which the physical, objective nature of an impairment is less relevant than the construction of a lived experience in which being Indigenous is central.

Decolonising Indigenous Australian disability: how lived experience is negotiated

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The picture of disability among a colonised people that comes from this research resonates to some extent with Hollinsworth’s (2013) analysis of the literature, although our starting points differ. Hollinsworth commences from a consideration of racism in relation to colonisation and notes how this has negatively affected Indigenous Australians. He then discusses disability among Indigenous Australians. His primary message is that colonisation is itself a disabling force, and that disability services need to be aware of this history and its ongoing effects. This research commenced as an investigation of the lived experience of disability among Indigenous Australians, explicitly taking into account the context of colonisation. The fact that this research is consistent with the research agenda recommended by Hollinsworth, even though it was planned and started several years ago, is fortuitous.

For Hollinsworth, the ongoing impact of colonisation and its racist underpinnings mean that Indigeneity is an objective disadvantage in general, which adds further disadvantage on top of those already experienced as a consequence of having a disability. The accounts given by the participants showed that they were constantly aware of the fact and effects of colonisation, and their sense of themselves as Indigenous was a core feature in how they situated themselves in Australian society. However, by inquiring into their lived experience as Indigenous people with a disability, it became clear that the sense of being a person with a disability is not just an additional set of disadvantages on top of being Indigenous, but is actually an experience that is negotiated such that being Indigenous becomes a strength.

The category ‘person with a disability’ was not taken up readily because of cultural constructions of health and functioning. ‘Disability’ itself appears yet again to be a non-Indigenous concept. While this has been identified before (for example, Ariotti1997, 1999; Senior 2000; O’Neill, Kirov, and Thomson, 2004), the diversity of Indigenous kinship groups and languages always raises the possibility that such findings among delimited groups are not generalisable. The participants reflect a historical ‘melting pot’ in Queensland, where dozens of kinship groups from across the state were forcibly settled together on missions, run by a range of Christian groups that aimed to convert them and to educate them to undertake menial roles. These former missions still act as crucial nodes of social interaction, with the participants often visiting them to catch up with extended family. The fact that participants from this ‘melting pot’ provided the same evidence for a lack of an Indigenous construct for disability found in earlier but more geographically specific studies provides strong evidence for the generality of the finding.

It is worth noting that there is a similar lack of a readily translatable Indigenous construct for ‘health’ (Go_djalk and De Donatis2008; Boddington and Raisanen 2009). In pursuing an alternative Indigenous concept that addresses the same outcomes as western concepts of health, a holistic approach has been advanced which is so broad that it encompasses all aspects of life (McLennan and Khavarpour 2004; Boddington and Raisanen 2009):

Aboriginal health is not just the physical well being of an individual but is the social, emotional and cultural well being of the whole community in which each individual is able to achieve their full potential thereby bringing about the total well being of their community. It is a whole-of-life view and includes the cyclical concept of life-death-life.

Health to Aboriginal peoples is a matter of determining all aspects of their life, including control over their physical environment, of dignity, of community self-esteem, and of justice. It is not merely a matter of the provision of doctors, hospitals, medicines or the absence of disease and incapacity. (National Aboriginal Health Strategy Working Party 1989, ix)

This definition differs in one important respect from western constructs of ‘well-being’: rather than an individual experiencing ‘health’ by being able to participate in the community, their very role as a community member is validated by their ability to participate. One of the implications of this broad approach is that Indigenous health is related to the history of colonisation, issues of Indigenous identity, and the need for self-determination (Boddington and Raisanen 2009). That is, what ‘health’ means to an Indigenous person is intimately bound up in what it means to ‘be Indigenous’. Thompson and Gifford (2000), in a study of the lived experience of diabetes among Indigenous people in Melbourne, framed this as ‘embodiment of the collective in the individual’: remaining a part of the collective (family, kinship group, Indigenous community) is synonymous with health. An implication is that disability (defined in medical terms) is not experienced as something different if it does not affect continuing participation and support. When Auntie Amelia could still go to the Elders’ meeting, or the people on Mornington Island could be wheeled down to the beach to go fishing, they were participating and were therefore neither ‘unhealthy’ nor ‘disabled’.

In this sense, Indigenous cultural constructions relevant to disability are negotiated in the context of participation with other Indigenous people. One of the effects of colonisation has been to bind Indigenous people together through shared disadvantage, and this is paradoxically a source of strength in dealing with impairments. Losing a leg through diabetes is a physical hindrance, but if interaction with family, kin and community continues there is no ‘disability’. In this way Indigenous people either actively decolonise (or resist colonisation of) disability through the negotiation of their lived experience. It is worth noting that there are resonances here with the social model of disability and the distinction made in the International Classification of Functioning, Disability and Health (WHO 2001) between impairment, activity and participation. However, as pointed out by Solli and Barbosa Da Silva (2012), these elements of the International Classification of Functioning, Disability and Health are inconsistent with a holistic approach to health due to their ultimate basis in a materialist ontology.

Decolonising disability services

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While lived experience can be negotiated by Indigenous people, disability services present a significant challenge to a decolonising agenda (Hollinsworth 2013). The participants in this research were reluctant to access non-Indigenous services because they felt they were being pre-judged based on their Indigeneity. Disability or other health services thus become sites of racism (even if it is passive rather than active racism) and disempowerment (Durey, Thompson, and Wood 2012; Henry, Houston, and Mooney 2004). The reluctance of older Indigenous people to deal with forms and medical staff was mentioned many times. However, there are few Indigenous doctors and few Indigenous-run services (National Aboriginal and Torres Strait Islander Health Council 2008), and an ongoing lack of cultural awareness among employees (Durey, Thompson, and Wood 2012).

The Indigenous Respite Centre differed from most services because it was managed by Indigenous people, but even here the influence of colonisation was evident. In numerous informal conversations, the Centre Manager remarked on the difficulty in treading the fine line between abiding by government guidelines and regulations and delivering a service that was ‘culturally appropriate’. Having worked in a similar area in healthcare as a registered nurse, the researcher noted that staff-to-staff relationships were more informal and there was more of a cooperative working relationship. Staff-to-client relationships did not have the same distinction as in mainstream services; in particular, status within Indigenous communities (e.g. being an Elder) was privileged over the formal power of a staff member. This placed some extra burdens on staff as they negotiated their position as a staff member giving care and their position within Indigenous communities. Orienting conversations about social positions and connectedness contributed to a group identity within the Indigenous Respite Centre that was specifically Indigenous. This tended to further blur the staff–client divide. Similar issues have been recognised by Coombe (2008) and Hill et al. (2001), who discuss the challenges presented to Indigenous heath service managers by the conflict between their operation as part of the Indigenous community and the constraints imposed by western management models. This may be a more general phenomenon: analogous findings were reported in a reflection on management issues in a Canadian Aboriginal community health organisation, where it was noted that ‘The relational nature of traditional Aboriginal health practices and management is not captured in current health management models’ (Edwards and Martin 2012, 161).

The implication of this patterning of relationships around Indigeneity is that there is a mismatch between the needs of Indigenous people using Indigenous disability services and the formal structures and functions imposed on the services, as well as the underlying assumptions about relationships between staff and clients. However, changing these formal approaches and assumptions whenever government funding is involved entails a challenge to Australian governance principles and practices (Coombe 2008). It would be worth exploring whether this has the same relevance in non-Indigenous disability services with Indigenous clients.

Conclusion: decolonising disability

As noted earlier in this paper, the literature on disability tends to lack self-consciousness in terms of cultural diversity (Stienstra2002, 5). This reflects the standpoint of non-Indigenous, white hegemony in which the unstated but ever-present assumption is that a non-Indigenous experience is universal rather than culturally specific. Based on the qualitative findings presented in this paper it is very clear that Indigenous people living with disability experience their disability very much within the context of their Indigenous identity.

The interplay between Indigeneity, disability and colonisation is complex and multifaceted, and is constantly evolving. Today Indigenous Australians share a strong sense of experience and history that could not have existed without colonisation. ‘Disability’ is a shifting and elusive term even in northern discourse, and among Indigenous Australians it is difficult to disentangle from the ability to participate in the life of one’s family, kinship group and community. Rather than disability being an added burden to the ongoing impact of colonisation, the sense of shared Indigenous experience is utilised to negotiate a lived experience of disability in which being Indigenous is a strength rather than a weakness. At the same time there is no intention to romanticise or essentialise Indigenous experience, and this research shows that this would not be appropriate anyway. The participants were well aware of disadvantage and discrimination, and showed a keen interest in political and other developments that devolved on the nexus between Indigenous and non-Indigenous Australian worlds.

For services such as the Indigenous Respite Centre the conflict between being a de facto representative of the colonising government and an Indigenous organisation entails more than one challenge. The association of services with government, either directly or indirectly, creates ambivalence in their relation to clients. In addition, conflict is experienced between asserting the Indigenous nature of the services and operating according to government-established procedures and guidelines. Decolonising disability services is a more challenging task because of the very nature of the mechanisms of welfare and control. For example, to suggest that management and safety guidelines should be relaxed to accommodate Indigenous ways of interacting that do not fit the staff–client model is a challenge to principles of governance valued by the Australian Government and the (overwhelmingly non-Indigenous) public. The challenge of decolonising Indigenous disability services is significant, but it must be attempted.

This research has made several important contributions. The research on Indigenous Australian disability has so far been limited and generally rural, and the great diversity of Indigenous groups leaves open the possibility that research conducted in one setting is not relevant elsewhere. The participants in this research were studied in an urban setting and drawn from a geographically dispersed base population, which strongly suggest that the findings are more broadly generalisable. Second, most research into Indigenous health and disability does not extend its inquiry into the historical impact of colonisation, apart from recognising that current levels of disadvantage have historical roots. Thirdly, the findings make it clear that the discourse on Indigenous disability and health needs to move into a more challenging space, that of Indigenous identity.

Whilst the frontier wars may have ceased, colonisation remains a powerful force in the lives of Indigenous people, since it continues to condescend the worldviews and identity of Indigenous people. This can be seen in the reframing of welfare policy and programmes for Indigenous people. Although Indigenous Australians with a disability draw strength from their Indigeneity in negotiating their lived experience, the decolonisation of Indigenous Australian disability needs to be pursued in the arenas of policy and service provision.

 

Week 2:  Policies and regulations

http://www.earlychildhoodaustralia.org.au/nqsplp/wp-content/uploads/2012/07/NQS_PLP_E-Newsletter_No38.pdf

http://www.pwc.com.au/industry/government/assets/disability-in-australia.pdf

http://education.gov.au/inclusion-and-professional-support-program

http://www.aussieeducator.org.au/education/specificareas/specialeducation/specialeducation.html

http://www.unicef.org/sowc2013/files/SWCR2013_ENG_Lo_res_24_Apr_2013.pdf

Week 3: families and communities

http://web.b.ebscohost.com.ezproxy.lib.swin.edu.au/ehost/detail/detail?sid=6322e191-644f-4661-a400-411164413a46%40sessionmgr110&vid=0&hid=102&bdata=JnNpdGU9ZWhvc3QtbGl2ZSZzY29wZT1zaXRl#db=anh&AN=48298708

http://www.naeyc.org/files/yc/file/200909/FamiliesOfChildrenWithSpecialNeeds0909.pdf

http://www.acecqa.gov.au/Collaborative-partnerships-with-families-and-communities

http://ncac.acecqa.gov.au/family-resources/factsheets/additional_needs.pdf

 

This task requires you to investigate and summarise. You will therefore be required to use scholarly resources to support your views.

You must use APA style referencing in-text and include a reference list with your final submission.

Assessment criteria

  1. 1. Identification and analysis of factors that contribute to understandings of additional needs.
  2. 2. Knowledge and understanding of the impact of additional needs on children, families and schooling.
  3. Evidence of reading to inform and support analysis.
  4. Structure and presentation of ideas.

Marking criteria:

  1. Identification and analysis of factors that contribute to understandings of additional needs (30%) à A range of key factors are critically examined, demonstrating an awareness of the broader socio‐cultural, health‐ related and behavioural context around additional needs. Identified factors are critically analysed from multiple perspectives.
  2. Knowledge and understanding of the impact of additional needs on children, families and schooling.  (30%) àA sophisticated understanding of the construction of additional needs on children, families and schooling are critically discussed and evaluated from multiple perspectives. Comprehensive research has been used to support original and insightful perspectives on the principles of inclusion and diversity and the connections to broader theory.
  3. Evidence of reading to inform and support analysis.   (20%) à Outstanding selection of resources that discuss the topic within appropriate theoretical frameworks. The selection of readings contributes to a thoughtful, detailed and in‐depth discussion.
  4. Structure and presentation of ideas.   (20%) àHighly sophisticated, fluent and persuasive expression of ideas. Great clarity and maturity of presentation. Little ambiguity in the expression of information and ideas. References embedded expertly into the flow of information and ideas. Flawless use of APA style for all forms of referencing.

 

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