Australian Indigenous

A review of the literature on disability services for Aboriginal and Torres Strait Islander peoples

This review is also available as a downloadable PDF using Adobe Acrobat.

• Indigenous perceptions of disability

Indigenous perceptions of disability

As with many aspects of Indigenous life before the colonisation of Australia that began in 1788, little is known about disability – in terms of Indigenous perceptions of disability, the levels of disability, or the ways in which people with a disability were cared for by others. And, reflecting the great diversity of Indigenous peoples – Australian Aborigines and Torres Strait Islanders – living on the Australian mainland, Tasmania, the Torres Strait Islands and other islands, there would be multiple ways in which disability would have been conceived and responded to.^vi

It is somewhat surprising, however, that 'there are only passing references to people with impairments in the journals and writings of the early explorers, missionaries and anthropologists' [3]. While noting that the status of people with impairments in Indigenous communities prior to the direct impact of colonisation is 'primarily based on speculation and conjecture', Ariotti concluded that they were 'treated and cared for no differently from other members of the group or clan' [4, p218]. Historical and anthropological sources reviewed by Ariotti suggest that people with severe impairments were, on occasion, left behind to die, and infanticide was practiced to a limited degree throughout Australia [3, 4].^vii

As a part of his intensive research among the Ngaanyatjarra, Pitjantjatjara and Yankunytjatjara people living in the cross-border region of Western Australia, South Australia and the Northern Territory,^viii Ariotti found that there were discrete Pitjantjatjara words for specific impairments, but that there was no word for disability – that is, there was no abstract term that 'differentiated between or separated people with impairments from the rest of the community' [4, p218]. Having no word for disability, contemporary Anangu have attempted to adapt an existing word, nyumpu (crippled or maimed), to make sense of the concept of disability. This adaptation is not without problems, however, as some people have objected to its use, feeling that they were being 'labelled and stigmatised, not about their personal limitations, but about their perceived social standing' [4, p219]. This reaction reflects the fact that 'it is not the functional limitations of impairment which constitute the greatest problem faced by disabled individuals, but rather societal and social responses to it' [5 cited in 4].

The holistic way in which impairments have been, and are, perceived among the Anangu people is, of course, consistent with the holistic way in which Indigenous peoples generally have perceived health and related issues [6-8]. It is important, as Ariotti points out, that 'services providers work from a framework that recognises that disability is perceived in broad holistic terms and does not stay confined to the limitations and sense of loss experienced by the individual person' [4, p211].

Ariotti’s findings among the Anangu are similar to those of a less rigorous study undertaken in the Top End of the Northern Territory in 1984 [9]. This study, of Indigenous people living in Darwin, Katherine, Bamyili and Ngukurr, found that: disability only became an issue if it caused a handicap;^ix and social stigma did not attach to disability or beliefs about cause(s). The management of handicaps by Indigenous people may be quite different to non- Indigenous ways and a person with a disability must be viewed ‘through their individual perception of handicap and in the context of their culture and lifestyle’ [9 p12]. These findings about Indigenous perceptions of disability are consistent with international findings that where sociability is prioritised above productivity in a cultural group there is no limit to participation in ordinary life events by people with a disability [10, 12 cited in 11].

In recognition of differences in perceptions of disability in non-western cultures generally, and also of differences between urban and remote Australian Indigenous communities, field testing of the International Classification of Impairments, Disabilities and Handicaps (ICIDH) included study of definitions, services required and outcomes expected in two Indigenous communities in the Northern Territory [13]. It was found that engagement with family and fulfilment of family roles influenced how ‘able’ Indigenous people felt, but that geographical inaccessibility was a handicap and an impediment to a ‘healthy’ life. Generally, ‘people were often not aware of how much they were limited by their condition. Some people had different expectations of health and different perceptions of what is normal and expected’ [13 p9].

The study found that a distinction was made between congenital disabilities and those caused by accidents – the former often being attributed to some maternal wrongdoing [13]. Attitudes also differed in relation to physical and mental disability, with intellectual or behavioural problems being simultaneously attributed to medical and supernatural causes.

An earlier study in the Northern Territory had noted that highly visible bodily impairments (such as amputations) were more likely to be seen as disabilities, while age-related restrictions were regarded as part of being ‘just old’ [11].

All of the research discussed above relates to Indigenous people living in remote parts of Australia – or still having close cultural and temporal links with remote communities – and little attention has been directed specifically at the perceptions of disability of Indigenous people living in the rural and urban areas of southern Australia. The valuable research that has been undertaken in New South Wales [14-18], Victoria [19, 20] and Western Australia [21] has focused largely on the current issues regarding access to and use of disability services by Indigenous people. Much of this research included attention to cultural and social aspects, but mainly in relation to the barriers to services. As such, the scope of this research is not as broad as that undertaken in more remote parts of the country, from which most information about Indigenous perceptions of disability is derived.

The general features emerging out of the research are:

• Indigenous people with a disability are generally not excluded from or stigmatised in their communities;
• some disabilities may be seen as a 'pay-back' for a past wrongdoing, and other may be seen as something 'special';
• independence may not be seen as a major issue in some Indigenous communities;
• disability may be viewed as a family or community problem, rather than a personal one;
• some people with severe disabilities may be seen as the responsibility of 'welfare'; and
• a person may be identified and named after their disability (for example, a person with an eye injury may be known as 'one eye') [22]

Reflecting the holistic ways in which Indigenous people viewed – and still view – health and related issues [6-8, 23], it is not surprising that many Indigenous people tend not to separate disability and health conceptually [21].

Perhaps this tendency should not be surprising – even from a non-Indigenous perspective – in view of the fact that disability is an 'umbrella term for any or all of: an impairment of body structure or function, a limitation in activities, or a restriction in participation' [26, p332). Measurement of the prevalence of disability in Australia has reflected this continuum, with the Australian Bureau of Statistics using in its 1998 Survey of Disability, Ageing and Carers the definition: a 'limitation, restriction or impairment which had lasted, or was likely to last, for at least 6 months and which restricted everyday activities' [24]. Recent refinements by the World Health Organization have seen a much greater focus on activity limitations (difficulties an individual may have in executing activities of daily living) and participation restrictions (problems an individual may experience in involvement in life situations) [25, pp7-10].

The potential for conceptual confusion arises also from the way that responsibility for services is divided in Australia: people who acquired a disability before reaching 65 years of age are generally regarded as the responsibility of the disability services sector, while people who acquire disabilities at older ages are generally the responsibility of the health or aged care services sector [26]. This division tends not to apply, however, for many activity limitations and/or participation restrictions due to chronic health conditions, such as those resulting from severe heart disease, diabetes and chronic renal disease.

Thus, it is not difficult to imagine why the Indigenous community, for whom chronic health conditions make such a major impact, tends not to separate disability and health conceptually.

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Last updated: 23 February, 2005