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.

• The pattern of disability among Indigenous people
• Caring for Indigenous people with a disability

The pattern of disability among Indigenous people

The main sources of information about the level and types of disability in Australia are the periodic surveys conducted by the Australian Bureau of Statistics (ABS), but these surveys have never included sufficient numbers of Indigenous people to enable any definitive conclusions about disability.

There have been few studies of disability in the Indigenous population, but evidence suggests that the level of disability and handicap among Indigenous people is likely to be much higher – ‘perhaps at least twice as high as’ – that of the total population [27, p223].

This estimate is consistent with a study undertaken in 1991 in the Taree area of New South Wales [28, 29]. The study, which followed the methodology used by the ABS in its national surveys of disability, found that 227 (25%) of the 907 Indigenous people living in households in the Taree area had one or more disabilities [28].^x After adjustment for differences in the age structures of the Indigenous and non-Indigenous populations, the levels of reported disabilities among the Indigenous regular residents of the Taree area were 2.5 times higher for males and 2.9 times higher for females than for males and females in the total Australian population. (It should be noted that these estimates are based on a very broad definition of disability used by the ABS – including impairment of body structure or function, limitation in activities, and/or restriction on participation – much broader than the criteria used in establishing the eligibility for disability support services.) Almost one-fifth (19%) of regular Indigenous residents reported having a disability of the sense organs, such as hearing loss (8.4%) or loss of sight (1.4%) [28]. The next most frequently reported disabilities were ‘disorders of the musculo-skeletal system and connective tissues’ (16%), ‘circulatory system disorders’ (15%), and ‘respiratory system disorders’ (13%). Bearing in mind that the study excluded people living in health establishments and institutions – whose residents would be expected to have higher levels of disability – the levels of disability reported were much higher than those for the total Australian population. The authors noted that the high levels of disability found in the Taree study highlighted the fact that Indigenous people living in other parts of Australia needed to be assessed, so that the full extent of the problem could be gauged and appropriate action taken [28]. To date, there has been no similar study undertaken anywhere in Australia.

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Caring for Indigenous people with a disability

As noted above, little is known about how Indigenous groups viewed and addressed disability prior to the commencement of colonisation in 1788. However, based on his review of historical and other sources, Ariotti concluded that people with impairments were ‘treated and cared for no differently from other members of the group or clan’[4, p218]. As Berndt and Berndt noted about people with obvious disabilities (such as ‘lameness, blindness, deafness, cleft palate, boomerang legs (a sequela of long-standing yaws infection), face or limbs eroded by yaws of leprosy’), ‘other things being equal, such a person is cared for in the framework of the kinship system within which he or she has a place which does not rest on physical appearance or physical achievements’[8, p192].

As with other aspects of life in ‘traditional’ times, the group’s particular kinship system provided the ‘blueprint’ to guide its members in their social interactions [8]. Centred around ‘the elementary or nuclear family as the basic kinship unit’, the key group for normal living responsibilities was the clan, ‘a group of people who claim to be descended in one line from the same putative ancestor or ancestress’ [8, p43, p89].

Ariotti’s research found that, for the Anangu, the care of a person with an impairment was the responsibility for the person’s family [3, 4]. This responsibility was emphasised by Elliot: ‘handicapped people are regarded by all as being the responsibility of the family. Handicapped people are not a community issue. An "outsider" will not interfere in the personal business of a family’[9, p6]. Reflecting broad kinship links, the responsibility for care of a person with an impairment (and of old people) lies with the broad extended family (not just the nuclear family) [30, 31]. This type of responsibility is likely to have been the case throughout much (if not all) of mainland Australia and probably Tasmania prior to the direct impact of colonisation, but much less is known about the situation in Torres Strait Island communities.

These complex kinship systems, involving broad family responsibility for the care of people with a disability, varied across Australia, and ‘are still strong in many areas, including urban environments’ [22]. Thus, throughout Australia – in remote, rural and urban areas – most Indigenous people with a disability were, and are, cared for within their extended family.

It is true, however, that not all extended families are able to provide an optimal level of care for the family member with a disability [31]. For example, a review of the needs of aged Aboriginal people in the metropolitan area of Perth concluded that ‘the myth that Aboriginal people are being cared for by their families can lead to their needs being overlooked’ [32]. Many families did care for their elderly, but a breakdown in traditional structures had contributed to areas of neglect. The following reasons why some Indigenous families couldn’t care adequately for their disabled member(s) were identified:

• any Indigenous people live in poverty and often cannot afford to care for more needy members of their group – the added expense entailed in caring for a person with a disability can disadvantage other members of the family;
• people with a disability can be very vulnerable to exploitation in environments where alcohol misuse and family breakdown have occurred;
• the burden of grief and stress carried in many communities can lead to inconsistencies in care;
• family allegiances can make accessing services difficult; and
• many people are disadvantaged by not knowing how to care and what services are available [21].

As well, the proportion of Indigenous people with profound or severe handicaps requiring continual and/or frequent assistance in activities of daily living is higher than that of non- Indigenous people [33]. This has implications for the capacity of families to care for the family member with a disability. Respite care is usually arranged within the family unit or community. This is often the best arrangement, but it can cause some difficulties [21]. It is often difficult to find a suitable carer, especially if support needs are high. There is no community-based training for carers: ‘training for carers may impact positively upon the community’s ability to provide respite care. Training needs to be provided in the communities in a culturally appropriate form’ [34].

The fact that many Indigenous families face other pressing issues – such as health and housing issues – also needs to be taken into account in considering their capacity to care for a person with a disability. This aspect was identified explicitly for Indigenous people in New South Wales [35], but almost certainly applies to Indigenous people across Australia.

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Last updated: 23 February, 2005