Conceptual framework for policy and research development with indigenous people with disabilities.
This paper proposes a conceptual framework for disability studies to empower Indigenous people in disability research and policy development to improve the service participation of Indigenous people. The Australian Institute of Health and Welfare (AIHW) reported that the prevalence of disability was more than twice the rate reported for the non-Indigenous population (AIHW 2008a, 2008c, 2010). Among Indigenous people there are higher rates of young people caring for people with disabilities and higher rates of people with intellectual and psychological disabilities involved in the criminal justice system (AIHW 2008a, 2008c, 2010; Steering Committee for the Review of Government Service Provision 2009). AIHW (2008b) reported that despite slight improvements in access rates for some services and supports for people with disabilities, the participation rates of Indigenous people in disability services were lower than the reported prevalence of disability.
A conceptual framework is typically used to situate the preferred approach for undertaking an enquiry, and this approach is underpinned by specific theories, viewpoints or ideas to explain a particular social issue or phenomena. The current gap between the prevalence of disability and the low participation of Indigenous community members in disability services raises concerns about the effectiveness of dominant approaches to understanding and addressing this gap. In the disability studies field, researchers, government agencies and 'specialists' have attempted to identify a specifically 'Indigenous' definition of 'impairment', 'disability' and 'handicap' ever since the nineteenth century. Western definitions of handicap, impairment and disability have also been imposed upon Indigenous communities for more than a century (Denzin and Lincoln 2008). This paper explores the historical and theoretical foundations of current dominant conceptual frameworks in Australian disability research that have been developed in accordance with Western knowledge systems and their epistemologies. This paper also explores the impact of Eurocentric methodological fundamentalism in understanding disability and the needs of people of Indigenous background with disabilities (Meekosha 2004, 2011; Moreton-Robinson 2004).
The paper goes on to examine the use of Indigenous Standpoint Theory (IST) (Foley 2006; Nakata 2007) as an approach to the decolonisation of the production of knowledge in this area. IST is explored as an alternative and complementary conceptual framework for understanding and addressing the gap between the high proportion of Indigenous people who have a disability and the low participation in disability services. First, the paper identifies how conceptual frameworks of disability influence policy and practice in this area.
In 2001 the World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health (ICF), which attempted to merge individual approaches and social approaches to disability. The ICF was developed as a conceptual framework for international policy and research regarding people with disabilities. Australian and state/territory governments have utilised the ICF for data collection, research and policy development. The use of the ICF in this way influences who is identified as having a disability and the factors that are considered important in characterising the experience of disability and therefore how this experience might be addressed, by whom and with what resources and measures of accountability. Factors identified in the ICF as aspects of human function include an individual's mental and physical performance, participation in activities of daily living, and the social and environmental context in which the person lives. Consequently, impairments, barriers and obstacles in each of these areas are characterised as potentially disabling.
WHO and AIHW maintain that the ICF is globally translatable and applicable in different cultures (AIHW 2003; WHO 2001) and therefore can be used to assess prevalence and to plan for support. For example, cultural diversity was considered as both a 'personal' factor and an 'environmental' factor influencing human function (AIHW 2004; WHO 2001). However, the ICF and disability studies scholars have not paid enough attention to how the experience of colonisation influences the way that disability is conceptualised, understood and experienced in Indigenous communities and that this varies with the diverse array of Indigenous nations and cultural groups, even within Australia. For example, a child in an Indigenous family might be diagnosed by a medical practitioner as having a developmental delay. Factors to be considered in investigating a possible disability would include a range of medical and psychological tests. Depending on the nature of the disability, this might extend to consideration of physical access requirements. Limited or no attention may be paid to the ongoing experience of racial discrimination, poor housing and intergenerational trauma that may be experienced by the whole family and which could be major sources of disablement for the whole family.
Indigenous communities' approach to disability
Connell's (2007) and Morton-Robinson's (2004) descriptions of the Western sciences as tools of Western imperialism help explain why the disability studies field has struggled to establish a conceptual framework for disability studies involving Indigenous communities. Non-Indigenous researchers have racialised and subjugated global Indigenous knowledge production by describing themselves as the producers of knowledge (Moreton-Robinson 2004:75):
it is academics who represent themselves as 'knowers' whose work and training is to 'know'. They have produced knowledge about Indigenous people but their way of knowing is never thought of by white people as being racialised despite whiteness being exercised epistemologically. Whiteness established the limits of what can be known about the other through itself, disappearing beyond or behind the limits of this knowledge it creates in the other's name.
Indigenous people were continually viewed as the 'known' or the 'objects' in research in this area as opposed to the 'knowers' or 'actors' in the field. There are volumes of knowledge, a whole epistemological library, on Indigenous people with disabilities. This knowledge is not owned by Indigenous people. Rather, this library operates as a resource for non-Indigenous researchers and government decision makers to legitimate themselves as the controllers and bearers of the 'truth' about disability (Moreton-Robinson 2004).
Connell's (2007) review of the evolution of the social sciences found that much of the written history of the social sciences was imagined. Many university sociology teaching text books posit the birth of the social sciences as commencing in the late 1800s, focusing on modernity and industrialisation. However, the majority of social science publications in the early history of the social sciences focused on ancient and medieval societies, colonial or remote communities, cultural sub-groups in Asia and Indigenous communities of colonised lands (including Australia). Thus, the social science field was based on assumptions about the superiority of the West. Connell (2007:15) defined this spectrum of the social sciences:
the enormous spectrum of human history that the sociologists took as their domain was organised by a central idea: difference between the civilisation of the metropole and other cultures whose main feature was their primitiveness. I will call this the idea of global difference. Presented in many different forms, this contrast pervades the sociology of the late nineteenth and early twentieth centuries.
Analysis from the very genesis of social sciences focused on the concept of us (Europe/metropole/ healthy/normative) and them (including non-European/Indigenous/sick/disabled/non-normative/ other). From the early 1900s, disability researchers defined and inscribed 'indigeneity' on what they perceived as 'real' Indigenous culture. During the early 1900s, disability researchers focused on measuring the 'progress' of Indigenous people's assimilation into European society. Researchers described and measured indigeneity on the basis of perceived 'traditional' and 'non-traditional' cultural beliefs and practices. For example, John Bostock's (1924) and Cleland's (1928) studies on Indigenous people's psychiatric hospital admissions focused on differences between 'traditional' and 'non-traditional' Indigenous people. Indigenous people who were admitted as a result of cursory or witchery, such as being abducted by an evil spirit, sung to death or who had the bone pointed at them, were labelled 'traditional'. Indigenous people who were admitted as a result of acquiring psychosis from perceived 'non-traditional' cultural practices were labelled as 'nontraditional' people, who were transitioning into European society.
The terms 'disability' and 'handicap' were imposed on Indigenous communities by the various knowledge disciplines of Western science. The approach to disability in Indigenous communities is as diverse as the cultures within the Indigenous population. For more than a century, medical and social scientists have attempted to develop or uncover an 'Indigenous' definition of 'disability'. A review of anthropological and ethnographical material has shown that many Indigenous communities had traditional words for some 'impairments', such as sensory and physical impairments. Gilroy (2010b) found that the earliest recording of the definition of 'impairments' in Indigenous communities was in the last decade of the 1800s by Edward Curr during a study entitled the Great Australian Race. Curr collated literature on languages, including sign language (also known as gesture language), and cultural practices of Indigenous communities throughout Australia. A search of the final report found no single word equivalent to 'disability' or 'handicap' shared by all Indigenous communities due to the diversity in culture and language within the populations of Indigenous peoples. Rather, there were multiple words and concepts for specific 'impairments'. For example, Curr found twelve different phrases relating to deafness, ten for blindness, four relating to insanity and three for being unable to speak using oral language. Indigenous communities in close proximity to each other, such as in Tasmania, had different dialects and terminologies relating to different and specific impairments (Gilroy 2010b).
Indigenous disability rights' advocates and stakeholders point out that every Indigenous community has a different understanding and interpretation of disability. Government and mainstream disability service agencies have reported that the concept of disability is relatively new to many Indigenous communities and is conceptualised differently between and among Indigenous and non-Indigenous societies. Lester Bostock (2004:6), president of the First Nation Peoples Disability Network, said that 'there is no special category in Koori thinking for physical and intellectual disability'. Gething (1994) found that many Indigenous mobs in remote New South Wales do not differentiate between age-related illnesses and disabilities. Reid (1985) examined the status of older people and Elders in Yirrkala and found that Indigenous people did not classify older people who experienced impairments as having a 'disability' as they were included in all aspects of community life. Reid (1985:92) reported that 'difference between the fortunes of individual elders largely reflect their personalities and their differential location in the economic, political and social structures'.
Many Indigenous people interpreted the consequences of European colonisation as disabling. Meekosha (2011:673) stated that 'we cannot meaningfully separate the racialised subaltern from the disabled subaltern in the process of colonisation'. Moreover, the consequences of wars, dispossession, genocide and cultural destruction produce 'disabled' people. Many Indigenous people see trauma and loss of their cultural lands and sacred sites as constituting significant disabilities. Disability is also seen to arise as a result of a lack of Western education, such as the inability to read or do arithmetic, and the difficulty in getting past the barriers of discrimination to access government and non-government-managed services (Gilroy 2009; Meekosha 2011). An Indigenous community health worker (Gething 1994:81) said that 'just being black is a disability: no education, no jobs, kids don't think they can do anything'.
Labelling and categorising individuals by their perceived abilities is considered offensive in many Indigenous communities. As a result of past policies of forcibly removing Indigenous children from their mobs by categorising them by skin colour and stereotypical body features, many Indigenous people perceive categorisation on the basis of perceived abilities or disabilities as another attempt to erode their social solidarity. Ariotti's (1997) study of the Anangu perception of disability found that discussing a person's physical impairments brought shame and embarrassment to the person and to his or her family. Similarly, a Department of Health, Housing and Community Services study on the frail aged found that there was a social stigma associated with being labelled as 'handicapped'. Disability is commonly accepted as just part of life and supporting people with disabilities is seen as family business. Family roles often function as a barrier for the provision of disability services because offering help and assistance to Indigenous people with disabilities can be misinterpreted as an embarrassment and an insult to the competence of their family (Gilroy 2009).
Despite the efforts of numerous representatives of Western science, an Indigenous definition of disability that captures the diversity of cultures and experiences of colonisation among the Indigenous population has not been developed. As a result, Australian governments, disability service providers and Indigenous communities continue to struggle to establish a shared understanding of disability (Gilroy 2009, 2010a). In developing a conceptual framework for research and policy development regarding Indigenous people with disabilities, each Indigenous community must be understood in the context of their experience of colonisation, disadvantage and cultural heritage. The aim of establishing such a framework will be a better understanding of the experience of disability and the factors influencing outcomes for Indigenous people with disabilities and a framework appropriate for research that does not involve the objectification of Indigenous people.
Defining Indigenous Standpoint Theory
Indigenous Standpoint Theory (IST) offers an alternative to the practice of subjugating Indigenous people as the cultural other. Meekosha (2011:672) rightly claims that 'disability studies differentiation between chronic illness, impairment and disability cannot usefully explain the contemporary lived experience of Indigenous peoples'. The impact of colonisation on Indigenous people with disabilities has not been properly considered in Australian disability studies and policy. Meekosha (2011) suggests that Australian Indigenous peoples undertake a process of intellectual decolonisation to allow people in the global south to be included in disability scholarship. Challenging the imperial position of non-Indigenous researchers and research institutions developed over centuries will be a difficult, time-consuming task.
Nakata (2007) described IST as a distinct form of analysis where the Indigenous researcher's personal experiences elevate attention to aspects of the research enquiry that might not have been uncovered. IST is not about defining 'traditional' from 'non-traditional' knowledge and operations of knowledge production, contrary to John Bostock's (1924) and Cleland's (1928) examples explained earlier in this paper; 'Knowledge to Indigenous people is not something primitive... rather it is continuous, evolving and adapting to change' (Foley 2006:27). IST 'is a process and ontology, an epistemological approach to learning within research applications that enables the Indigenous person to maintain/regain or learn their own epistemological standpoint that has been lost due to colonisation and the adoption of ethnocentric Western forms of approaches to knowledge' (Foley 2006:29).
IST has global foundations in the works of numerous Indigenous scholars, including Jackie Huggins (1993), Marcia Langton (1993, 2001, 2003), Aileen Morton-Robinson (1998, 2000, 2004, 2008), Wendy Brady (1992), Lester-Irabinna Rigney (1999), Errol West (1987) and Linda Tuhiwai Smith (1999). These Indigenous scholars saw it as their duty, as Indigenous people, to take control of a global cultural space relating to Indigenous politics. The objective was to change the mindset of non-Indigenous people and Indigenous people in defining Indigenous people as both the producers and participants in the production of knowledge. This entailed opening up dialogue between Indigenous and non-Indigenous researchers and stakeholders by exchanging skills and knowledge in conceptualising research epistemologies that are culturally appropriate for Indigenous people at a local level.
IST is not an Indigenous way of doing research. IST is a philosophical position situated in the Indigenous person's local ancestry, 'which informs the methodology in a science that is possibly tens of thousands of years old' (Foley 2006:29-30). IST includes emancipatory principles developed by Indigenous people in response to their involvement and experience in the struggle for Indigenous self-determination and autonomy. For example, Morton-Robinson (2000:xvi) suggested an IST for feminist studies as influenced by how an Indigenous woman experiences:
* sharing an inalienable land
* sharing a legacy of dispossession, racism and sexism
* resisting and replacing disparaging images with self-defined images
* continuing activism as mothers, sisters, aunts, daughters, grandmothers and community leaders
* negotiating sexual politics across and within cultures.
Thus, in this case, an Indigenous woman's standpoint is shaped by how and where she was socialised as an Indigenous woman. Similarly, Linda Tuhiwai Smith (1999:185) defined Kaupapa Maori research as influenced by how Maori people have experienced colonisation and dispossession. Therefore the IST or philosophical position of Maori research:
* is related to 'being Maori'
* is connected to Maori philosophy and principles
* takes for granted the validity and legitimacy of Maori, and the importance of Maori language and culture
* is concerned with the struggle for autonomy over Maori cultural wellbeing.
Martin Nakata (1997, 2007) takes a different approach to research based on his experiences as a Torres Strait Islander person. Nakata provides three principles for a critical standpoint theory. The first principle is 'that Indigenous people are entangled in a very contested knowledge space at the cultural interface' (Nakata 2007:215). The cultural interface is the domain where the trajectories of two different histories, cultures, ideologies and practices intersect, thereby establishing conditions that influence the ways Indigenous people, in both urban and rural regions, make sense of and participate within society. As Indigenous and non-Indigenous people are socialised within different cultural contexts, the cultural interface is a place of ideological contestation between Indigenous and non-Indigenous societies. Non-Indigenous researchers can have a level of understanding of 'Indigenous issues' and Indigenous cultures, but this understanding will always be limited and distorted as a result of the cultural interface. Non-Indigenous people are not socialised into Indigenous culture and therefore can only understand it from an outsider's perspective (Nakata 2004): 'For in this space there are so many interwoven, competing and conflicting discourses that distinguishing traditional from non-traditional in the day-to-day is difficult to sustain even if one were in a state of permanent reflection' (Nakata 2004:27-9).
The second principle is that the researcher acknowledges that Indigenous agency is framed within the cultural interface. Indigenous people are expected to be both Indigenous and non-Indigenous at the same time: 'This is experienced as a push-pull between Indigenous and non-Indigenous positions' (Nakata 2007:216). Finally, the researcher then seeks to identify how individual experiences at the cultural interface function as a constant duality of tensions between Indigenous and non-Indigenous people and how they impact on people with disabilities (Nakata 2007:216).
Gilroy (2009, 2010a) showed examples of how these principles of the cultural interface can assist in understanding the challenges disability service providers face in improving the participation rate of Indigenous people in government-funded services. He concluded that exploring the cultural interface provides insight into some of the historical and cultural tensions between Indigenous people with disabilities and disability service providers. This information would be essential in informing culturally appropriate disability services that could promote the collaboration of local Indigenous people and disability service providers in supporting people with disabilities.
Indigenous academics Dennis Foley (2003) and Lester-Irabinna Rigney (1999) take a political activist approach. Foley (2003) and Rigney (1999) suggest three fundamental principles for research regarding Indigenous people. First, the research must be counter-hegemonic to Western ideologies, strengthening and supporting the fight to alleviate the social conditions that debilitate the lives of Indigenous people. As discussed earlier in this paper, Indigenous people have been subjugated and oppressed by Western epistemology in Australia for nearly three centuries. Research on Indigenous peoples must contribute to the fight for the recognition of Indigenous people and their self-determination in the production of knowledge. Second, the research must privilege Indigenous voices, which is fundamental to exposing the diverse experiences of Indigenous people with disabilities as unique. This will ensure that the non-Indigenous population is aware of the concerns, arguments, aspirations and dreams of Indigenous spokespeople (Foley 2006; Rigney 1999).
Third, Foley (2003) and Rigney (1999) suggest that research must be done by Indigenous researchers. IST has an emancipatory imperative in research regarding Indigenous people. Foley (2006) suggests that research on Indigenous people must be undertaken by Indigenous researchers, which is fundamental to the fight against Western imperialism that is maintained by the Western sciences (Foley 2006; Rigney 1999).
William Oates (2003) disagreed with Foley's and Rigney's suggestion that only Indigenous people can do research on Indigenous affairs. Oates (2003:5) said that 'the problem with this position is that insight and understanding are not dependent on the amount of melanin in the skin or whether the person can do a "kangaroo dance" or "Irish jig"'. Oates (2003) has misinterpreted Foley for two reasons. First, Foley and Rigney did not define 'indigeneity' on the basis of the darkness of a person's skin or cultural practices. Foley's and Rigney's principles did not forbid non-Indigenous people from being involved in the research. Rather, their principles acknowledged that Indigenous people have a level of experience and knowledge of colonisation and dispossession that a non-Indigenous person could not possibly acquire. Similarly, Maori scholars have encouraged non-Maori to be involved in research. Smith (1999:184) stated in relation to Kaupapa Maori research:
One can ask, for example, 'can a Maori researcher who is anti-Maori carry out Kaupapa research?' The answer, based on current definitions, is 'definitely not'. Another question is less easy to answer: 'can a non-Indigenous researcher carry out Kaupapa Maori research'? The answer on current definitions is more complex. Perhaps it might read, 'a non-indigenous, non-Maori person can be involved in Kaupapa Maori research but not on their own, and if they were involved in such research, they would have ways of positioning themselves as a non-Indigenous person'.
Similarly, many Australian Indigenous community-managed agencies (for example, Reconciliation Australia and the Australian Health and Medical Research Council) have suggested that excluding non-Indigenous people from working in Indigenous affairs is counterproductive to achieving true practical reconciliation between Indigenous and non-Indigenous people. Kathy Irwin (cited in Smith 1999) and the National Health and Medical Research Council (2003) suggested that non-Indigenous people can adopt an IST if the researcher works with the local Elders, leaders and advocates while satisfying the rigours of research. For example, Nakata's theory of the cultural interface has been adopted by both Indigenous and non-Indigenous educators and government education facilities (Choy and Woodlock 2007).
Although there are many models of IST in Indigenous scholarship, they all employ an emancipatory framework for research involving Indigenous people. The general objective that all these examples share is that Indigenous researchers utilise their experiences and accounts as Indigenous people in the research process. In this manner, IST breaks down the dominant position of Western sciences and contributes to the emancipation of Indigenous people. It is from this standpoint that we present the following analysis of current dominant models of disability which underpin the ICF.
Individual and social models of disability
Two main interwoven models of disability have been heavily debated in the international disability studies field: the individual and the social model (Fitzsimons 2009; Oliver 1996; Shakespeare 2006). According to the individual model, when the locus of disability is identified as residing within an individual, the medical condition is the focus of intervention either to decrease prevalence or to ameliorate functional incapacity. In contrast, the social model focuses on the disabling aspects of the environment and social structures, organisations, social policy and environments. Details and implications of each model to disability are discussed, beginning with the more dominant and longstanding individual model.
Individual model of disability
The individual model to the characterisation of disability encompasses three main approaches to the characterisation of disability: medical, administrative and charity/philanthropic (Fitzsimons 2009; Shakespeare 2006). Disability is interpreted as a problem eventuating from poor health, sickness or mental/physical impairment of the individual. There is limited, if any, acknowledgment of the role that society plays in creating and maintaining ideological, systemic and physical barriers that cause or exacerbate disability. Oliver (1996) stated that individualised approaches to disability benefit professionals, policy makers, administrators, and statisticians and staff from organisations for disabled people because they have vested interests in maintaining the status quo underpinned by the individual model. Each of these approaches is discussed in more detail below.
The medicalisation of disability, also known as the medical model of disability, perceives disability as a direct consequence of disease, personal/ physical defect or a health condition (Fitzsimons 2009; Shakespeare 2006). The medical understanding of disability reduces interventions to the 'disease' or 'abnormalities' of the body as opposed to any social interventions. Imrie (2004:289) said that this approach stems 'from the medical profession and reflect its interest in the impaired, or functionally limited, body as an object of scientific interest, classification and medical intervention'.
The management of 'disability' in this light is aimed at ailing medical conditions and adjusting perceived 'abnormal' behaviours. Barnes (1998) stated that this approach is rooted in American sociologist Talcott Parsons' 1940s work on sickness-related behaviour. Parsons (cited in Barnes 1998) argued that a normal state of being in Western societies is good health, which means that bad health and impairments deviate from the norm. Medical and psychological sciences focus on the experience of illnesses, whether chronic or moderate, and the consequences associated with those illnesses to the economy. This approach encourages the study of chronic and acute conditions and their effect on bodily functions, and the implications that the perceived abnormalities may have on the person's independence, the 'burden of care' and engagement in the economy. For example, people with intellectual disabilities who 'wish', or are expected to, access government-funded community participation services are required to have behavioural, personal and physical assessments to determine service eligibility. These assessments also determine the amount of funding granted to the service provider for each individual client (DADHC 2006).
The philanthropic approach, also known as the 'charity model', is promoted and promulgated by non-government charity organisations treating and portraying people with disabilities as vulnerable people in need of institutional 'protection'. Lyons (2001) noted that there has been a significant increase in the number of aged and disability organisations since the Second World War in response to an increase in government resourcing of non-government aged and disability organisations.
Shakespeare (2006) says that people with disabilities are not opposed to non-government not-for-profit disability services; however, they are opposed to people with disabilities being represented as hapless and helpless people. These institutions often portray negative images of people with disabilities as a means to increase financial and human resources. People with disabilities are portrayed as the passive recipients of charitable and tax-payer-funded community services that cure or manage disability (French 1994; Shakespeare 2006). A good example is the CareCareers campaign, a New South Wales community care workforce campaign managed by National Disability Services (NDS) between 2009 and ongoing through 2013 (National Disability Services 2011). The name CareCareers was chosen to make the workforce more attractive for people who wish to undertake 'care work'. NDS developed a website (www.carecareers.com. au) and television advertisements that displayed images of happy support workers looking after dependent, needy and grateful elderly people and young people with disabilities. A second example is the NSW Aboriginal Disability Network Rio Tinto Indigenous Foundation funding application, which represented Indigenous people with disabilities as a disadvantaged, needy and dependent subgroup of the population of people with disabilities (NSW Aboriginal Disability Network 2011).
The administrative approach to disability is interrelated with the previous two approaches. Titchkosky (2010) stated that individual time and space are framed, occupied and controlled by Western bureaucratic practice and, as such, the inclusion and exclusion of disability is also framed, occupied and controlled in this manner. Administrative models of disability are rigid processes embedded in government legislation, such as the Disability Services Act 1986 (Cth), and policies and funding agreements, such as the National Disability Agreement. Government processes usually relate specifically to assessment and eligibility criteria for individual 'service systems', such as Disability Day Programs or Supported Accommodation. These criteria are usually designed to 'include' and 'exclude' people based on medically diagnosed impairments as opposed to the physical and social environments in which people live (French 1994; Titchkosky 2010).
People with disabilities often perceive disability organisations as monolithic bureaucracies that envelope and isolate them into predefined categories of disability, place and time (Davis and Watson 2006; Titchkosky 2010). Some disability services funded under the National Disability Agreement tend to restrict 'service' and 'support' to people with severe to profound disabilities. Eligibility for some services is determined on a clinical diagnosis of disability (Australian Government Productivity Commission 2011). The diagnostic process can take months or even years to be completed. Medical specialists, other professionals and caregivers are required to focus on the person's deficits rather than the person's strengths. It is common for parents to visit a number of specialists to get the diagnosis they need in order for their child to be able to access disability services and support (Colmar 1995). As such, administrative and bureaucratic processes are often disabling in themselves and people are labelled as 'disabled' at a young age (Australian Government Productivity Commission 2011; Davis and Watson 2006; Titchkosky 2010).
The Aboriginal Disability Network (ADN) and National Disability Services (2010) reported many examples of how some Indigenous people refrain from accessing non-Aboriginal disability agencies due to the complex bureaucratic and administrative process, such as paper work and fee-for-service. Many Indigenous community-managed agencies postpone some bureaucratic processes until trust is established with Indigenous clients. Furthermore, some Indigenous community-managed agencies bend the rules of government funding agreements to meet the personal service needs of Indigenous families.
Social model of disability
The social model of disability views society as disabling the individual. This contrasts with the view that individual impairments or illnesses are the primary cause of disability. This approach accepts that disability is not an attribute of an individual but a complex interaction between environmental, social and hegemonic ideologies within society (Shakespeare 2006). Reeves (2005) used the term 'disabling society' to describe environmental and ideological barriers within society that create, or exacerbate, barriers for people. Reeves (2005) suggested that as society becomes more complex, as a result of increasing reliance on technology and growing urbanisation, the prevalence of disability will increase. Hence, the 'management' of disability requires collective social action to prevent and to overcome societal barriers. Oliver (1996:3) stated, 'from the 1950s onwards ... there was a growing realisation that if particular social problems were to be resolved or at least ameliorated, then nothing more or less than a fundamental redefinition of the problem was necessary'.
The social model underpinned the global disability rights movement during the last half of the twentieth century (Shakespeare 2006). From the 1980s, many disability rights organisations were established specifically to campaign for the rights of people with disabilities to be socially included in all aspects of Australian culture. For example, in 2011 People with Disability Australia (2011) listed its vision on its website: 'we have a vision of a socially just, accessible and inclusive community, in which the human rights, citizenship, contribution, potential and diversity of all people with disability are respected and celebrated'.
Contrary to the characterisation of disability as residing within an individual, the social model focuses on overcoming barriers to social inclusion and ensuring equal rights and full citizenship, rather than focusing on curing the pathology or medically 'treating' the disability. Early criticisms of the individual model of disability identified that it neglected the embodiment of the personal experience of disability and the individual nature of that experience, including the interactions between gender, class and culture in the experience of disability (Shakespeare 2002, 2006). The experiences of Aboriginality and colonisation, discussed earlier, were not considered in defining disability.
People with disabilities, their advocates and their allies acknowledge that the population of people with disabilities, just like the population of Indigenous people, is a culturally diverse group with widely different beliefs and experiences associated with disability. A variety of grassroots initiatives have developed in order to identify and respond to the diversity of experience associated with disability. For example, in 1992 the Multicultural Disability Advocacy Association (2011) was formed to advocate 'specifically for people from non-English speaking backgrounds with disability, their families and carers'. From 2003 advocates for Indigenous people with disabilities (such as Uncle Lester Bostock, Ros Sackley, Damien Griffis and John Gilroy) helped establish and promote the ADN (2011, 2012) to bring together Indigenous people with disabilities to share stories and support each other, and to create a systemic voice in the disability social movement.
WHO and the ICF
In 1980 WHO made its first conceptual framework on disability, the International Classification of Impairments, Disabilities and Handicaps (ICIDH). The ICIDH was originally intended to describe the effects of rehabilitation of chronic health conditions and physical impairments by merging the individual and social approaches to disability. WHO suggested that the ICIDH provide an international conceptual framework for the study and classification of disability. The ICIDH described three dimensions--impairment, disability and handicap (WHO 2001:18):
Impairment: In the context of health experience an impairment is any loss or abnormality of psychological, physiological or anatomical structure or function. Disability: In the context of health experience a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Handicap: In the context of health experience a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.
There was much criticism of the ICIDH by people with disabilities, advocates and disability studies scholars. Their concern was that the ICIDH emphasised an individualised characterisation of disability (mostly influenced by medical and administrative responses to disability) and did not adequately capture the impact of structural factors, the social environment and the subjective cultural experiences of people with disabilities themselves. The ICIDH was seen as being primarily a tool for governments to globally 'manage' the 'disability problem', therefore serving the vested interests of existing social structures, organisations and professionals (Hurst 2000; Imrie 2004; Pfeiffer 2000; Shakespeare 2006; Titchkosky 2010). There was no acknowledgment that diversity--culture, indigeneity, sexuality or gender--formed part of Indigenous people's experiences of disability (Senior 2000). Senior's (2000:22) study of the ICIDH (and the revised version, ICIDH-2) in Indigenous communities in the Northern Territory concluded that the 'application of the ICIDH-2, without a thorough knowledge of the community has the potential to produce misleading results'. The values associated with disability in these communities were different to those understood by the non-Indigenous researchers. This demonstrates that a classification tool would only be practical to understand Indigenous people's experience of disability if there was a shared understanding of disability and disability supports between local Indigenous and non-Indigenous communities. (3) Hurst (2000) commented that the weakness of the ICIDH to capture the social factors of disability was a consequence of WHO not including members of the disability movement in the planning and development of the ICIDH.
In 2001, WHO (2001; AIHW 2002) endorsed the International Classification of Functioning, Disability and Health (ICF) to replace the ICIDH. Contrary to the ICIDH, the ICF recognises disability as a multi-dimensional experience by merging the social and individual approaches of disability relating to:
* the body's functions and structures
* the activities that people do and the life areas in which they participate
* the factors in their environment that affect these experiences.
Each component is defined in the context of a health condition. Unlike the ICIDH, the ICF does not describe a handicap. The ICF conceptualises functioning as the interactions between any or all of 'an impairment of body, structure or function, a limitation in activities, or a restriction in participation' (WHO 2001:18), as represented in Figure 1.
A person's disability is conceived as an interaction between contextual factors (i.e. environmental and personal factors) and health and functioning. Environmental factors refer to the physical, social and attitudinal environments where an individual lives and conducts his or her life. Environmental factors have an external impact on the person's level of functioning. This includes discrimination, architectural design of the built environment and the community service system. Personal factors, on the other hand, refer to the actual lived experience of limitations. These factors include gender, sexuality, indigeneity, fitness or lifestyle, and historical experiences. In addition, personal factors include socio-economic status and experiences relating to remoteness and high-risk behaviours, such as drug and alcohol abuse and domestic violence (AIHW 2003, 2004; WHO 2001).
Functioning has two parts: body function/ structure and participation. Activity is measured on individual functional capacity, while participation is measured in terms of performance in the individual's usual or current environment. A person's health condition can influence the quality of body functions (such as mental health) and structures (organs and limbs) and how he or she participates in activities (the execution of a task) in his or her natural environment. An individual's personal factors can influence the level of performance in activities of daily living. The performance can thus be seen as a description of an outcome of disability (AIHW 2003, 2004; WHO 2001).
The ICF is often described as a 'biopsychosocial' approach to disability because 'it takes as its central tenet the individual's experience with illness or disability' (Hubber, Sillick and Skarakid-Doyal 2010:1955). A major advantage of the ICF is that it integrates information about an individual's disability considering factors inside the person related to a health condition and also social and environmental factors experienced by the individual in society. It is based on human functioning from the perspective of personal experience. It also acknowledges that although these interactions are specific, they are not always predictable on a one-to-one relationship (AIHW 2003, 2004). For example, a person may have:
* impairments without having capacity limitations (a disfigurement from a car accident may have no effect on a personal capacity)
* performance problems and capacity limitations without impairments (diseases or health conditions associated with drugs and alcohol)
* performance limitations without impairments or capacity limitations (discrimination based on disease, gender or race).
The label of disability is therefore a description of the individual's outcome as an individual within his or her community and not merely a consequence of perceived functional and health limitations. Bornman (2004:186) captures the purported benefits of the ICF:
The ICF is also etiologically neutral, emphasizes parity, is culturally appropriate and covers the whole lifespan. It can thus be used by any individual with a health condition in that it describes the consequences of any such condition, ranging from someone with a minor impairment such as hay fever, through to someone with severe impairments, activity limitations and participation restrictions, eg an individual with a dual sensory impairment. The more severe end of the spectrum covers the category of individuals traditionally referred to as 'disabled'.
After the adoption of the ICF, a number of committees were developed to help ensure global consistency in the application of the ICF in data collection, research and policy development. AIHW involved Indigenous people with disabilities, such as Ros Sackley and the First Nations People with a Disability Network, to ensure its cross-cultural applicability in Indigenous communities. The developers of the ICF aimed to fit Indigenous experience within a preconceived, purportedly 'universal', model, which is based on Indigenous people being conceptualised as the cultural other. For example, the idea that participation and disability is culturally specific and mob specific is not reflected in this model. This model also does not account for the disabling effects of colonisation (AIHW 2006; Senior 2000).
A conceptual framework
Supporting the political movement of Indigenous people with disabilities requires a culturally responsible conceptual framework for undertaking research and policy development involving Indigenous people with disabilities. This would also take into account the cultural diversity among the population of Indigenous people and the diversity in the conceptualisation and experience of disability. There is also diversity in the experience of colonisation and the inequalities/equalities between Indigenous communities and non-Indigenous communities at a local level. This also highlights that understanding the experiences of Indigenous people with disabilities cannot be de-contextualised. All these factors would be taken into account in the application of any conceptual framework.
The ICF is regarded as an accepted international conceptual framework that merges the individualised and social approaches to disability discussed earlier in this paper. The ICIDH did not acknowledge the impact of colonisation in Indigenous communities. Furthermore, the history of disability research and policy development continually attempted to homogenise and generalise Indigenous communities' conceptualisation and experience of disability. There was limited acknowledgment that each Indigenous community is unique and culturally diverse.
As represented in Figure 2, it is proposed that an IST be established as a foundation for the examination of any of the ICF factors currently considered to influence human functioning. The six criteria displayed in the figure reflect the literature on the two approaches to disability and IST. The criteria are suggested as a starting point to help researchers and policy advisors develop a localised IST for working with Indigenous communities that acknowledges the cultural diversity within the populations of Indigenous people:
1. Indigenous community inclusion: the research team includes Indigenous people with disabilities and Indigenous researchers/policy advisors, bringing with them their own experiences as Indigenous people. This ensures that the distribution of power and responsibility for the research are shared equally.
2. Colonisation is accepted as a social determinant of disability: the researchers must be well versed in how the factors of the ICF are influenced by European colonisation and dispossession of Indigenous communities' traditional lands and cultures. This knowledge is essential to comprehend the level of impact colonisation and dispossession has on the prevalence and experience of disability for an Indigenous person.
3. Acknowledge the similarities and differences between communities: the experience of functional limitation will be different and similar for each Indigenous community and between non-Indigenous and Indigenous communities in the same geographical region.
4. Emancipatory: the researchers are part of the struggle for Indigenous communities' right to be self-sustaining. Individual differences between and within Indigenous mobs and people are acknowledged.
5. Acknowledge the cultural interface: all participants involved in the project/research acknowledge that they operate in the cultural interface, bringing with them their own knowledge and experiences of disability and indigeneity. The cultural interface is the realm where the trajectories of Indigenous peoples' and non-Indigenous people's experiences of disability and indigeneity intersect. These intersections are an essential element in understanding the complexity of factors prescribed in the ICF.
6. Wherever possible, use the Indigenous local language of the local Indigenous communities.
Utilising Indigenous standpoint with the ICF could help ameliorate the current weaknesses of the global contextual framework in disability research and policy development. A good example of how this would work would be collaboration between a research team and localised Indigenous community-managed disability agencies to establish a research project with people with disabilities. The research methodology would include this conceptual framework to ensure the research would empower each local community. The actual scope and objectives of the project would be developed collaboratively. The criteria that form the IST will ensure that the research will empower the local Indigenous people and that Indigenous people will benefit from the results and utilise the findings of the research for the benefit of their families. An IST will increase the likelihood that the researchers and policy advisors (or team) will improve the quality of the outcomes in quantifying functional limitations within Indigenous communities for Indigenous people with disabilities. The ICF acknowledges the interplay of the individual approach and social approach to disability on an international scale. It acknowledges that both individual and social approaches must be adopted in empowering Indigenous people with disabilities in research and policy development and implementation.
The participation rate of Indigenous people in disability services is disproportionate to the prevalence of disability in comparison to the non-Indigenous population. This paper has proposed a conceptual framework to help empower Indigenous people in disability research and policy development in a bid to improve the disability service participation rates between Indigenous and non-Indigenous people and particularly the application of incomplete and marginalising conceptual frameworks in understanding the experience of Indigenous people with disabilities.
Connell (2007) and Morton-Robinson (2004) have shown how the social sciences academy has racialised, homogenised and subjugated Indigenous knowledge by instilling Western civilisations as the producers of knowledge. Researchers have attempted to define, prescribe and measure the prevalence and experience of 'handicap' and 'disability' in Indigenous communities within Eurocentric methodological frameworks. This paper has shown that researchers have imposed the term 'disability' on Indigenous communities as part of Australia's colonisation since the late 1800s.
Supporters of the ICF claim that WHO has improved on the ICIDH by merging the individual approach and the social approach to disability. Although the ICF acknowledges indigeneity as part of the personal and environmental factors, in practice WHO and AIHW homogenised Indigenous communities and subjugated Indigenous knowledge in formulating and testing the ICF. The objective of the development of the ICF in Australia was to fit the Indigenous experience within a predetermined, purportedly global, conceptual model for measuring individual functional limitation. The development of the ICF, together with other research on disability in Indigenous communities over the past century, has categorised Indigenous people as the cultural other.
The Australian disability studies academy and Indigenous communities need to adopt an IST to break down the superiority of the disability studies academy in conceptualising functional limitation in Indigenous communities. The above-mentioned criteria are suggested as a starting point to guide researchers and policy advisors to establish an IST. Furthermore, an IST will help decolonise the disability studies academy by equalising the power relationships between Indigenous and non-Indigenous people at a local level in the production of knowledge on disability. With a localised IST, research and policy advisors can then examine the full range of factors that might be disabling, including those identified in the ICF with Indigenous people, as well as those specific to the local community experience, including the impact of colonisation. A more complete and accurate understanding of the prevalence and nature of these experiences can assist us in addressing the participation in disability services.
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The University of Sydney
Southern Cross University
Susan Colmar and Trevor Parmenter
The University of Sydney
(1.) We use the term 'Indigenous' in this paper to include both Aboriginal and Torres Strait Islander peoples. Also, this term makes it easier to read when discussing Indigenous Standpoint Theory.
(2.) There was representation of Indigenous people on committees during the development and testing of the ICIDH and later the ICF. However, access to the meeting papers has been challenging.
John Gilroy is a Koori man from the Yuin Nation and is a lecturer in Indigenous Health at The University of Sydney's Faculty of Health Sciences. He has worked in the disability services industry for more than ten years in the non-government and government sectors. He completed his PhD in 2012 after investigating the main factors that influence the participation of Aboriginal people in disability services. He has recently been appointed by the Minister for Disability Reform to a national committee consisting of Indigenous people to advise the Australian Government on targets for Aboriginal people under the Closing the Gap strategy.
Michelle Donelly is a Senior Lecturer at Southern Cross University, Gold Coast, Queensland. Her research interests and projects--some of which are ARC funded--include the lived experiences of people with a disability, advocacy, and the promotion of wellbeing through respect, mentoring, opportunity and expectation.
Susan Colmar (BA, MA (Hons), DipEdPsych, PhD, MAPS, MCEDP) is a practising educational and developmental psychologist with more than 35 years' experience working with children and their parents and teachers. She is employed as the Program Director for School Counselling/School Psychology training at The University of Sydney. Susan is a member of the Australian Psychological Society and the College of Educational and Developmental Psychologists. Her PhD research--examining the best means of facilitating the language use of young children in conversational contexts--was awarded a Dean's commendation. She has published more than 60 books, chapters and articles.
Trevor R Parmenter (AM, BA, PhD), now Professor Emeritus, held the Foundation Chair of Developmental Disability Studies in the Sydney Medical School, The University of Sydney, from 1997 until his retirement in late 2009. He is now Honorary Professor in the Faculties of Education and Social Work and Health Sciences at The University of Sydney and Adjunct Professor in the School of Rural Medicine, University of New England. In 2005 he was appointed a Member of the Order of Australia for his contributions to research, teaching and services to people with developmental disabilities. He remains active in research and teaching in the Sydney Medical School.
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|Author:||Gilroy, John; Donelly, Michelle; Colmar, Susan; Parmenter, Trevor|
|Publication:||Australian Aboriginal Studies|
|Date:||Sep 22, 2013|
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