In the Hands of the Receivers
A paper written and presented by Margaret Cooper and Dianne Temby for Women With Disabilities Australia (WWDA) to the National Women’s Health Network Conference, held in Canberra, 17-19 November 1995. Copyright WWDA 1995.
Reporting on the 6th international Women and Health Meeting, Salomone (1990, p.81) says:
“the liberalist feminist position … overlooks one crucial point; that is that the technologies, treatments, and options made available to women are developed and promoted by men or male dominated institutions, only according to their rules and, ultimately, for patriarchally determined ends [and that] by supporting male defined options we may in fact reinforce the status quo of oppression to the detriment of all women.”
It is dangerous to overlook Salomone’s point that even enlightened policy can be converted or perverted by policy enactors who also hold biased gender, economic or political world views. World views or attitudinal sets influence us in the selection and adoption of theoretical constructs which in turn influences all our actions. Although the National Women’s Health Policy argues the effects of social factors on the health of women, and these are undeniably crucial when considering women’s health issues, there are insufficient strategies developed by service delivery systems towards addressing such issues.
As women with disabilities, we contend that an unintentional effect of imposing health policy for women from the top down, translated mainly through traditional service models, has meant that health and illness care strategies have developed with the same formalised or rigid boundaries which act as obstacles and barriers to keep many women out of women’s health services. Women with disabilities find themselves at the bottom of the pyramid of policy influence and many who seek health advice and management actually feel more oppressed. We will use the population of women with disabilities to illustrate the effects of marginalisation on health care.
Most service delivery models funded by government or non government organisations and the National Women’s Health Policy and Programme are deficit models in that the focus is on negatives of biophysical outcomes. By focusing on the disease process, injury or genetic abnormality, which causes physical, sensory, intellectual or emotional disability in the woman, rather than caring for the woman enmeshed in disability, health workers actually handicap the woman with disability. This has meant that health and illness care strategies have developed with the same formalised or rigid boundaries which act to keep many women out of available services.
Because service planners and providers continue to be locked into the dogma and ideologies of functionalism and biomedicalism, the risk remains for women with disabilities to be perceived and stereotyped as deviant. This attitude percolates through to women with disabilities and there is a danger that they do not see themselves to be like other women and thus they do not recognise themselves in the projected images of non disabled women in health promotion for women. A subsequent danger is that these women do not learn to identify with gender related health issues or education programmes thereby reducing their participation in developing their own health awareness and maintenance programmes. Thus the medical construct of women with disabilities leads to exclusionary perceptions and policy prejudices.
In Australia there are over 3 million people with disabilities. That is 18% of the total population of this country. Almost half of these are females, or, in other words, 1.5 million females in Australia have a disability (ABS 1993, p1). When you consider that we all come from a family and are embedded in a community context, the policy development to facilitate many women with disabilities in meeting their health needs becomes a significant issue.
This paper will examine some of the flaws existing in health and disability policy before suggesting strategies by which the National Women’s Health Policy and;Programme could meet the needs of women with disabilities, and other groups of women who feel alienated from mainstream services.
There is little research on the health needs of women with disabilities. This is highlighted in a survey conducted by the Victorian Women with Disabilities Network (1994) which stated that:
“Anecdotal evidence from women with disabilities shows they have particular difficulty accessing information and services. Women with disabilities have reported their great distress at not being able to find guidance or practical help with managing menstruation, contraception, exploitative relationships, sexually transmitted diseases, sexual assault, menopause, late onset incontinence, and osteoporosis. Although women’s health services are often sympathetic, their facilities are often physically or psychologically inaccessible.”
Women with disabilities experience the difficulty of overcoming the power differential mentioned in a National Health Strategy paper (1993, p 42), which impedes their taking responsibility for their own health care. In the consideration of the social perspective on women’s health the National Women’s Health Policy 1989 identified women with disabilities as having:
- disadvantage in obtaining adequate housing (p11);
- difficulties with menstrual management (17);
- a lack of acknowledgment by health workers of the sexuality and associated matters concerning female clients with disabilities(p 20);
- vulnerability to sexual exploitation (p20);
- been subjected to involuntary contraception (p 20);
- difficulties in managing urinary incontinence (p31);
- over-representation in institutional care (p 40);
- low rates of employment (p45);
- symptomatic treatment of mental illness rather than a holistic approach (p45);
- rape and sexual assault in institutional care (p 49 );
- difficulty in getting sufficient community support services (p55);
- unmet needs for accessible information and services (p62);
- a need for effective interaction between government and service providers on differing but related services required by, say a woman with mental illness (pp 66,69);
- lack of representation on relevant decision-making bodies (p64).
The National Women’s Health Policy (1989:80-81) prioritised health issues as: reproductive health and sexuality; health of ageing women; women’s emotional and mental health; violence against women; occupational health and safety; the health needs of women as carers; the health effects of sex role stereotyping on women.
Five key action areas were identified in the National Women’s Health Policy as follows:
- improvements in health services for women;
- provision of health information for women;
- research and data collection on women’s health;
- women’s participation in decision making on health;
- training of health care providers.
The complementary and differing health needs of women with disabilities were not identified as a priority. There were no specific directions to pay attention to our needs. Why is this so?
In 1994 we discussed the influence on people with disabilities, and assistive professionals, of the ‘biomedical’ model which “shares with the model of economic rationalism, the need to flatten out health or economic deviances” (Temby and Cooper, 1994). Both models claim the respectability and credibility of scientific methodology and both need to prove their respective virtues by controlling diagnosis and prognosis, resources, costs, research, information and access to accumulated knowledge.
The needs of a special population, women with disabilities, can look too particualrised, to the responsibility of the uninformed of a large biomedically or economically driven organization. Our needs become invisible to those looking at the big picture, or the bottom line. Critical paths are all the rage and many of us with disabilities have a few factors which have not adequately been accounted for in such mechanised planning tools.
That a health service worker’s personal belief system and prejudices influences how they act towards clients or the content of policies has been recognised, for example, Westbrook and Chinnery (1990) discuss the implications for the health of mothers with disability from contact with health practitioners’ who use unchallenged theory to perpetuate useless and devaluing views about disability. Is it possible that the lack of specificity in developing policies and services which will assist women with disabilities to attain and maintain a healthy lifestyle, within the factual parameters of impairment, can be explained by the workers in women’s health services and policy development holding negative attitudes about disability?
Feminists are not seen to be innocent of prejudice against their sisters, mothers, daughters, or colleagues with disabilities either. Morris ( 1993, p.59) states that “our experience is isolated, individualised; the definitions which society places on us centre on non-disabled judgments …of what disability means to them”. Morris goes on to charge feminist researchers of failing “to take on the subjective reality of disabled people, instead objectifying us so that the research is alienated from our experience”( 1993, p. 59). Such processes can distort or de-contextualise people’s perceptions of the health and social realities of women with disabilities. Such de-contextualisation coupled with a world view focused on cost containment and resource management language can negate women with disabilities to the point where we are not seen in any other role than as ‘carer’s burdens’. If we go back to the National Women’s Health Policy priorities, the health care needs of women carers are noted, but not those of women with disabilities.
The need for systemic change has been noted before. The Australian Health Ministers’ Advisory Council Subcommittee on Women and Health (1993), developed goals and targets and suggested strategies to direct attention at service delivery and systems change. While this is an interesting document, which enriches debate, it lacks any power as suggested strategies are not followed by any specified accountability process for action by any health sector.
Just for interest we noted that our example population were targeted under:
- goal 1.3 (p9) “Improve the health of birthing women and their babies” but no specific strategy was suggested;
- goal 1.8.2 (p22) “Improve women’s knowledge about and confidence in their own reproductive health” with a suggested strategy “to foster self-management of reproductive health with a focus on menstruation … and to do this via education of carers;
- goal 7.2 (p52) ‘Enhance women’s sexuality’ with suggested sensible strategies about offering accessible information and education to disabled women and health care providers about expression of their sexuality.
Women with disabilities are not alone in their perception that little has changed. Nutbeam, Wise, Bauman, Harris and Leeder (1993) found that health services continued to be dominated by traditional diagnostic and clinical services.
People with permanent or recurring disabling conditions are misperceived and labelled by workers in sectors of the public health system as ‘chronic presenters’. Sexism and ageism may further corrupt the attitudes of medical workers to the point where investigation of new complaints are not taken seriously.
In 1983 Kulys wrote of the conflict in social work training posed by the value of enabling clients to exercise self-determination, a value commonly promoted by modern health professionals. Butler’s reference to attitudes to ageism and chronicity held by medical and other health care workers is very specific and says “this can take the form of active avoidance and dislike, or a less obvious pattern of paternalism and infantilism” (Butler, 1975, p.79).
Take the example of Elaine who used an electric wheelchair as a result of a poliovirus attack four decades ago. She brought up her family, ran a household, and then took on fulltime work. Elaine began to complain to her local doctor of intense fatigue. After months of him telling her this was a natural concomitant of ageing with disability, she insisted on basic tests. Elaine was found to be anaemic, then was admitted to a public hospital for treatment of a kidney infection. She returned home, the cause of anaemia not investigated, and arranged for a gastroenterological study at a different hospital. A bleeding bowel cancer was revealed. Elaine may not have been so assertive in getting proper care had she not been part of a steering committee of women with disabilities which had received a small amount of funding to set up a health advocacy project. Elaine was fortunate enough to be networked with supportive people actively working for better health services for women with disabilities. Part of the problem was also the effect of the cost containing model of case mix funding which may have influenced Elaine’s medical workers into treating the kidney infection only.
‘Casemix’ was defined by the then Department of Health, Housing, Local Government and Community Services in 1993, (p.2) as ” a scientific approach to the Classification of patient care episodes and the development of strategies to use those Classifications to manage health care.” Inevitably this approach to developing efficient handling of single diagnostic cases has been perverted by hospital executives’ drive for profit. Casemix is not geared to evaluate and reward best practice. Effective casemix depends on its co-existence in each institution with case management projects, managed care plans, quality assurance programmes, good discharge planning and continuity of service links.
How might the person with disability/chronicity be best managed in an acute care setting? Case management is usually patient centred and focussed on the efficient use of resources leading to the best outcome for the patient. It is clearly seen in practice in Aged Care Assessment teams. As described by Cohen and Cresta (1993, p25), a variety of case management models exist and will continue to evolve, benefits being “improved continuity of care and enhanced coordination or services and staff support systems to promote mutual program-planning, problem solving and client advocacy”.
Managed Care has more of an economic flavour. Team work is practised on all patients on a unit or ward. Critical paths or care plan systems are used for controlling patient length of stays and unit costs. Variances are noted, analysed and addressed. The danger is that potential patients who demonstrate variance, i.e. the extremely old or people with disabilities may be seen as economically unwelcome, and may perceive themselves as in such environments. If, as Wood, Bailey, and Tilkemeier (1992, pp55-65) state, “the purpose of identifying variances is to evaluate what works and what needs refinement”, then the worldview focussed on cost containment could change towards focusing on a better patient outcome.
Quality assurance programmes may do much to counter-balance the financial elements of managed care, if the responsiveness and desirable performance outcomes in the care episode are monitored and evaluated (Syron and Corey 1989, p25). Duckett (1995, p.29) is quite candid about the difficulty of deciding exactly what quality health outcomes are when he asks; “By what measures do we decide that all this Commonwealth and State expenditure is delivering beneficial outcomes?”
The training and employment of women with disabilities to fulfil health professional roles, including the valuable networking tasks of peer counsellors, would assist better health education amongst this special population. This long term strategy would also have to include work on possibly negative attitudes held by non-disabled professionals. Corbet and Madorsky (1995 p 67) discuss the prejudice from other doctors which is faced by American doctors who become disabled but still practice medicine and surgery. While those doctors state the perspective of “wounded healers assists their rapport with patients, their non disabled colleagues find the notion of a disabled doctor “a cruel contradiction in terms”.
Where is the woman with disabilities in this welter of acute care policy schemes? What if she just wants to go home and continue in her various roles. Volland (1985) refers to four patient specific complications in discharge planning decisions. The complications she lists are:
- time to make a critical decision;
- the presence or absence of hope;
- the patient’s perception of the freedom to choose; and
- available social supports.
For optimum health promotion and avoidance of secondary illnesses of people with disabilities and chronic health issues, we should be moving away from just developing models of illness care, financing single diagnostic procedures and standardising treatment to funding outcomes. The aim of the National Better Health Program is to keep people healthy and outside the acute care setting. Nutbeam et al (1993 p9) suggested evaluation of the Better Health Program. We concur with some of the issues that come out of evaluation of the Better Health Programme which are:
- the need for a broader framework of action to address social justice aspects of health;
- mechanisms for accountability; and
- effective monitoring needs to be clearly defined to delineate issues of action and responsibility; and
- the importance about engaging the health system in the achievement of national health goals so that resources can be more effectively allocated.
If we accept the reality that women with disabilities will survive in Australia but run the risk of poor health because their primary care and health maintenance programs are poorly conceptualized, what strategies could be developed to offset the defecit and give some equity? A move in the right philosophical direction is the recommendation of Macklin (1993, p.13) that the National Health Strategy pay more attention to preserving and promoting health including “attention to those who may have less-than-optimal health by virtue of chronic illness, disability, or social circumstance”.
Another useful move to empower women with disabilities would be to include women with disabilities as a National Women’s Health Policy target for health promotion focusing on action in:
- reorientation of primary care;
- provision of health information and education;
- real involvement of women with disabilities in health;
- decision making bodies; and
- research into our needs.
If primary care for the woman with a disability could be reoriented to see the woman within the circle of planners and providers, engaging in the process with people, that would help the client, and may see a reduction for the woman in the paralysing effect of the power differential. From anecdotal discussion with other women with disabilities effective women’s health practitioners share the following positive traits. These are:
- They recognise that the woman client has authority over herself, removable only in extreme legal cases;
- They acknowledge that irrespective of any manifest difference in structure or function the client has many abilities and is capable of many roles;
- They recognise that the person is more than the sum of their parts;
- They credit client’s knowledge of tried and true experience in health management of her disability;
- They allow for some intuitive knowledge, or ways of knowing in the client about what is the best way for her to be involved with and responsible for her health care; and
- They listen to the cultural background and context of the client.
Are women with disabilities aware of the health issues pertinent to their gender? Health information provision must be carefully targeted by service providers funded by health and/or disability programmes to reach the large numbers of women with disabilities who do not register or participate in national screening programmers and who do not attend women’s clinics Attitudinal and other barriers, discussed earlier, often lead women with disabilities to never present, or present only once, to women’s health agencies. It is timely to remind programme planners and service providers that the Disability Discrimination Act does exist, and will give increasing effect to our claims for health promotion and management equity. The responsibility of the health care system in relation to to related client needs is spelled out in the Health Goals Document (1993 p.59) which says:
“The health care system itself is frequently not the most appropriate avenue for solving health problems or for preventing their occurrence. However it is the responsibility of the public health system to ensure that the quality of intersectoral collaboration with other government authorities (such as housing, environment) and non-government sectors will foster health and well being.”
Real involvement of women with disabilities on health decision making bodies is not apparent to us. Our situation and non-representation was marked by submissions to the Lavarch Inquiry into Equal Opportunity and Equal Status for Women in Australia and in the Committee’s report 1992(pp209-210), specific recommendations were made to better our situation. Clearly affirmative action programmes are needed to address the lack of representation of women with disabilities in health decision making. Likewise we should be involved in research into our own health needs either as independent and fully funded researchers or as co-researchers with equal decision authority.
There are some key questions demanding well researched answers. From the clinical spectrum one question is “what is the meaning of osteoporosis or the medically suggested antidote of hormone replacement therapy to a woman living in a wheelchair?” What meaning do many of the targeted health policies and strategies have for women with disabilities and what of the differences in needs and difficulties stemming from the different impacts of different disabilities? In characteristics of our disabilities reside some differences between you and us but in our femalness reside many similarities. Our needs stem from our differences and our similarities to you. We have particular needs that need to be addressed through specific policies and strategies and we have general needs that can be addressed through general strategies developed to meet the needs of the general population of women. The lack of responsiveness to the particular needs of women with disabilities is itself a form of discrimination.
To date it appears that, in the main, women with disabilities have been relatively marginalised in the current Women’s Health Policy and Programmes. It also seems that new issues have arisen with regard to access to screening equipment, comprehension of the promoted issues etc. New fears are emerging for some of these women with regard to their bodies being perceived as treacherous and dangerous, never tested for goodness only for badness! More and more the focus is on the body and off the impact of the social and interpersonal of an individual’s health. Old problems of fear of loss of control to health service providers, lack of consultation, limited and limiting focus and funding for truly effective health programmes for women with disabilities within programmes for women with out disabilities persist.
More research needs to go into clearly and accurately identifying the health issues, policy development and strategies required for implementation of any health maintenance or management activities for women with disabilities. How do you know what to do if you don’t really know what is needed?
Butler, R. 1975, ‘Why survive? Being Old in America’, Harper & Row quoted in Kulys op. cit.
Department of Health, Housing, Local Government and Community Services, 1993, ‘Casernix: a new direction in health care management’, AGPS, Canberra.
Cohen, E. L. & Cresta, T .G., 1993, ‘Nursing Case Management: From concept to evaluation’, Mosby.
Wood, R., Bailey, N., & Tilkemeier, D. 1992, ‘Managed care: The missing link in quality improvement’, Journal of Nursing Care Quality 6:4.
Syron, E. and Corey, H. 1989, ‘Is monitoring money more important than monitoring quality?’ Journal of Quality Assurance, April/May.
Duckett, S. 1995, ‘Casemix in Australia: the unfinished agenda’, in “Managing Better with Casemix” Keynote address to the Seventh Casemix Conference in Adelaide, Australia.
Corbet, B. & Madorsky J. 1995, ‘Wounded healers’, New Mobility March-April.
Volland, P. 1985, ‘Model for Decision Making in the Discharge Planning Process’; Discharge Planning An Interdisciplinary Approach to Continuity of Care National Health Publishing.
Macklin, J. 1993, ‘Pathways to better health’, Issues paper No. 7, AGPS, Canberra.
House of Representatives Standing Committee on Legal and Constitutional Affairs 1992, Half Way to Equal, AGPS, Canberra.
Salomone, J. ‘Conference Report’ Issues cn Reproductive and Genetic Engineering 4 (1) p.81.
Australian Bureau of Statistics; Disability Ageing & Carers, AGPS 1993 pl.
Victorian Women with Disabilities Network, 1994 ‘Unpublished submission to VicHealth’ September.
National Health Strategy Background Paper No 12; ‘Health Participation’; AGPS, March 1993, p 42.
National Women’s Health Policy, AGPS, Canberra.
Temby, D. H. and Cooper, M., 1994. ‘Mindsets: The sticks and stones that break more than bones’, Proceedings of Advance Rehabilitation Inaugural Conference of the Faculty of Health Sciences La Trobe University, Melbourne, 24 November 1994.
Westbrook, M.T. and Chinnery, D.L. 1990, ‘Negative Attitudes Toward Physically Disabled Women Having Children: An additional handicap’, Australian Social Work. 43:4 ppl7-22.
Morris, J. 1993. ‘Feminism and Disability’, Feminist Review, Spring No. 43, pp 57-70. 1993.
Australian Health Ministers’ Advisory Council Subcommittee on Women and Health, 1993, ‘Goals and Targets for Australian Women’ AGPS, Canberra.
Nutbeam, D., Wise, M., Bauman, A., Harris, E., and Leeder, S. S.,1993, ‘Goals and targets for Australian health in the year 2()00 and beyond’; Report commissioned by the Commonwealth Department of Health Housing and Community Services .
Kulys, R.1984, ‘Future Crises and the Very Old: Implications for Discharge Planning’, Health & Socialwork.