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The Oration: Ageing And Disability: Toward A Unifying Agenda

From: Australian Disability Review
Creator: Irving Kenneth Zola (author)
Date: 1988
Publication: Australian Disability Review
Source: Available at selected libraries

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An implicit argument of the previous section has been the importance of the human element in the habilitation and rehabilitation of people with disabilities. It is a message easier said than done. The documentation of the informal health care system (Levin and Idler 1981) and the self care revolution (Gartner and Riessman 1977; Levin 1977; Levin, Katz and Holst 1974) have led some to feel that the solution is at hand. Let the family supply the missing element. A bit of history and analysis may put this in perspective.


Home health care can hardly be termed a revolution. For most of recorded history, the home was the preferred site for the delivery of health services (Blanpain 1985). Only after the 1950s did the centralisation of medical care in the hospital, the medical centre, and the doctor's office become so pervasive as to lead to the virtual disappearance of physician home visits (Gibson and Kramer 1965).


At the very time when medicine became even more highly technological, centralised, and thus institutionally based, the seeds for a contrary push out of the hospital were already in place. First of all, there was the growing shift to chronic illness and disability as the major health problems of our society. These have lent themselves to no short-term cures. Instead, the treatments have become more palliative (eg. aspirin for arthritis), more adaptive (e.g. insulin for diabetes), more long-term and more regularly done by 'patients' and their families outside the hospital. Secondly, the very 'miracles' of high technology also had their downside. A reliance on technique has led to people's increased feelings of depersonalisation and thus the suspicion that the hospital was no place to be for the long haul. Thirdly, the new economic perspectives of the 1980s only fuelled these concerns. Resources were now perceived to be finite and the rising costs of health care were seen to be particularly ominous (Abel-Smith 1974). For all these reasons the 1980s has been a time when more and more people are being returned to their home for care. Now when speaking of people in need, the research continually refers to care being provided by 'the family' or 'children'. (Cantor 1984; Cina & Care 1984) The terms themselves imply the sharing of responsibilities. The empirical data tell another story. That the familial services do not seem to involve a large network of informal or formal care givers is indeed an understatement (Jones & Vetter 1984). For whether it be in Europe (Reif & Trager 1985) or New Zealand (Jack 1985) or the US (Stephens and Christianson 1986), the primary support person in more than 70% of all instances is a woman working largely alone. Moreover, she may not be a blood-relative of the person she is caring for, and in at least two studies, more than 40% of these care givers would themselves be defined as 'elderly'; that is, over the age of 65. Interestingly, when the support is shared with others it is not likely to be those involving most personal and intimate elements such as washing, dressing and feeding. Furthermore, when males are the primary supporters, they are even less likely to engage in such personal tasks, delegating them where it is possible to others or at least doing them less frequently. The same division of labour exists in regard to what some call 'counselling activities' and others refer to as 'just plain talking'. Men seem to have less time available for such activities or occasionally admit their outright discomfort in doing them.


It is ironic that at a time when statistics point to an ever-growing number of people in need and when pressures and preferences are growing to supply this need in the home, the very group most involved in providing such informal care is under personal and societal pressure to enter and stay in the job market. They are accurately described as 'women in the middle', juggling responsibilities for their own families with caring for aged parents (not necessarily their own) and paid employment (Brody 1981).


What of the future? Aside from the strain this must put on these women and on their personal relationships, future demographics make the continuation of such a pattern unlikely. Many of these people have reported why they, rather than other siblings, took over the care-giving responsibilities. Implied in such data is that at some point there were a number of siblings to choose from. With the post-World War II baby boom past and no new one immediately forecast, families continue to shrink. With emphasis on geographic mobility in our society, families live farther and farther apart. With greater pressure for women to contribute more to family income, the jobs with flexible hours and working conditions (and usually lower wages with little vertical mobility) so essential to these care-givers will necessarily become less desirable. And, finally, the fact that one in every two marriages ends in divorce will necessarily attenuate the ties of women to their in-laws. Though 'burnout' may not be imminent for those currently giving service, it is easy to see that there will be a future social burnout; a diminishing available supply of female care givers.

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