Mindsets: The Sticks and Stones that break more than bones
Written by Margaret Cooper and Dianne Temby. A paper presented to the Advancing Rehabilitation: Inaugural Conference, Melbourne, 4 November 1994 by Margaret Cooper and Dianne Temby for Women With Disabilities Australia (WWDA). Copyright 1994.
For increasing numbers of people throughout the world the self-management of chronic health or disability is an issue of significance to them and health service providers. The illness care system is experiencing the impact of the issues of ‘chronicity’ as they effect the lives and abilities of more and more citizens. The capacity of service providers to facilitate effective rehabilitation, which places the person at the centre of all interventions and remedies, is sorely challenged in a health service system permeated by a philosophy of restraint and control. The focus of this paper rests with the person engaged in disability. The use of personal vignettes and comparative analysis are used to explore how health beliefs and mindsets have a significant influence on the role of rehabilitation providers and self management outcomes for people with enduring changes to their health and abilities.
When I started to apply myself to the details of the paper, I was struck by a recurring picture playing in my mind. Each time I began the process of unthreading the tangles of ideas triggered by the tittle ‘Mindsets’: The sticks and stones that break more than bones, a startling flashback to the place of my childhood occurred and there, behind our house, on a 10,000 acre property, I see my favourite sheepdog starting to prance and turning circles with excitement, ready to race alongside the horse paddock to greet me as I approach the stable. She’d done this so often that a rut had formed and indeed, she used to lie in it on hot days to take comfort in the cool soil.
The other image accompanying this but in no direct sense connected to it, was of the straggly line of dairy cows winding their way along a now well beaten track towards the milking sheds. Twice a day every day, at the same time, year in and year out, they took the same track to and from that shed. They too had created ruts which they happily stepped into and followed as a matter of course. Any attempt to change the path, to change the routine, led to high anxiety and low productivity expressed in low milk yields.
Like the dog and the cows, we too can create ruts from our habits. We are all creatures of habit and left to our own devices we will form routines and patterns in our daily activities including routines of thinking. What started out as a tremendous breakthrough in thinking as a means of organising information and making sense of the world can become a mindset if the assumptions and current validity of the purpose undermining the ‘world view’ are not constantly checked and challenged. Kneller (1978) defines ideology as a set of fundamental beliefs about nature, people and society and a ‘world view’ as those beliefs about people should be and act in such a world.
When people fail to challenge the assumptions of their world views from time to time and instead slip into comfortable complacency they are as ritualised as the dog and as habituated as the cows by their thinking routines. They get into a thinking rut and strongly resist challenges to their ideas. When this happens a ‘mindset’ is said to exist. Another little gem from our childhood is the saying:
“Sticks and stones will break my bones but names will never hurt me;
When I’m dead and in my grave you’ll be sorry what you called me.” (anonymous)
Margaret and I remember it well because it formed part of our armoury to be put defiantly back at the teasers. Names can hurt, they can wound deeply. Indeed we would contend that in many instances people are battered and bruised by stick and stones that pass themselves off as names. Naming is significant. Naming can be to include or exclude certain people or groups of things and at times formalised into labelling. It can also influence peoples reactions to individuals or groups. Naming and labelling give us ways of knowing and can reflect part of a broader world view. Margaret and I have been named by our families only once but labelled by others many times. I have been called ‘poor lady, deviant, aggressive woman, blinky, too independent, maladjusted, pig-headed’ and so forth. Margaret has experienced similar assertions including ‘spazzo….retarded….clever to be able to shop all by herself…..asexual…..spirited woman’. From these names or labels we sound like an episode from Jekyll and Hyde. We believe these labels reflect the uneducated values of the labelers.
A former Governor of Victoria, Sir Paul Hasluck (1975, p.7) in an address to fellows of the College of Nursing Australia, said: “A person or group who has already chosen a certain doctrine or ideology only looks for the facts that confirms a belief that is already formed”. His statement describes something of what happens when people refer to others negatively or stick labels on them; we look to confirm the label and often miss seeing the person.
Ideologies and world views strongly, albeit subconsciously, much of the time, influence which analytical frameworks we choose in order to explore ands make sense of our world. These ideologies influence our research traditions which in turn determine what knowledge is legitimated and valued and what isn’t (Fawcett 1992). Sartori (in McClellan 1986, p.56) argues that ideologies are ‘a crucial lever for obtaining political mobilisation of the masses’. Legitimated knowledge is linked to power and who has more or less ability to influence outcomes.
One ideology or model that has permeated Western thinking and which has had a large influence on outcomes in health and rehabilitation matters is the ‘biomedical model’. Steeped in the respectability of ‘scientific method’, affirming the patriarchal norms and mores of our society and pioneering new technologies to cure or control illness and ostensibly promote health, this model has at one stage or another permeated the thinking and actions of most health or rehabilitation professionals. Anyone who has had the need of services will have experienced the impact of this model, or action guide as it were, as a sense of powerlessness, rescinding oneself to the role of patient, objectification and a reduction in their personhood to the sum of the part that is hurting, not working or that is harbouring some infection.
The biomedical model focuses on dysfunction of, and cures or remedies for, the individual. This narrow focus persists even when cures or remedies do not exist. In this model most of the action occurs after the loss of health, so most of the money for health is spent in an effort not necessarily to retrieve health but to control disease; for example in Australia, between 1989 and 1990, 81.6% of health expenditure was devolved to institutionalised acre, 4.4% was allocated to community and public services of which only 1.5% was devoted to disease prevention and health promotion (Palmer and Short 1994).
Fixing up after a health insult or crisis rather than preventing and empowering people for health and maximum self-management costs a lot of money per unwell individual and per community. According to Suacier (1991) this ‘old public health’ model has led to the inequitable financing of health care, a surplus of highly specialised acre providers and the passive dependent role of the citizen receiving health services.
The biomedical model shares with the model of economic rationalism the need to flatten out designated health or economic deviances and cast a wide net of damage control. Both models lead to a need for control of illness costs, centralisation of information to ease the stress on planners, the need to generate income to fund more research and an averaging out of resources so that everyone has the opportunity to access services that are increasingly mediocre.
Whilst rehabilitation as a field within the health services sector has itself been imbued with the medical model world view, more recently it has been prepared to explore other analytical frameworks in search of more integrative and socially appropriate ways of influencing health outcomes (Hahn 1991, p.17). Today many rehabilitation theories and enlightened health workers and disability program developers look beyond the objective, quantifiable problems to improvement and maintenance of the whole person and their environment.
Hahn (1991, p.17) in his discussion on empowerment summarised the relative perspectives when he said:
“Whereas the functional limitations paradigm was based both on a medical interpretation that stressed physical inabilities or limitations and on an economic view that emphasised vocational restrictions, the minority (or rights) group approach is founded on a socio-political definition that views disability as a product of the interaction between individuals and the environment.”
The illness care system in Australia is experiencing the impact of the issues of chronic disease and disabilities as they affect the lives and abilities of more and more citizens. The capacity and the political will of service providers to facilitate effective rehabilitation, which places the person at the centre of all rehabilitative actions, is sorely challenged in a service environment permeated by a philosophy of economic rationalism and client control.
People themselves who cannot imagine how they would cope or manage with a disability tend to generalise the impossibility of all people with disabilities. Having executed this little trick, the next step is to categorise the person, depersonalise them, and then once in ‘the system’ they are subordinated to the authority of virtually every other group of people in society.
These sorts of attitudes and behaviours towards people with disabilities and/or chronic health problems are driven by a world view that is based on the functional limitations model referred to earlier, which is tied up into the productivity model which has as its roots the Protestant work ethic and the accompanying morality and judgementalism. In this ethic work is everything and people who cannot or choose not to work are seen as worthless and a ‘burden on the public purse’.
Rehabilitation policies and interventions in Australia are strongly vocationally oriented. Indeed in many instances eligibility for services is tied to work potential. The danger in this linkage is in the mindset which places employment as the paramount achievement which gives meaning and value to life and that if one does not or cannot do work then there is no meaning or value for that person and indeed that that person is of less value than those who do/can work. The ability to work is not synonymous with the ability to be self-managing and eligibility for services that are tied to work ability may well be challenged as discriminatory. If an individual has reduced self management and autonomy and is socially isolated then other human possibilities and choices become limited, including employment. Such individuals will remain trapped in the downward spiral of limited options, disillusionment and disempowerment if rehabilitation officers and other health workers continue to do more of the same.
Self-management is a goal that most people are socialised to and expected to achieve in the normal course of events. It is a milestone expectation which rests on the notion of personal sovereignty, No one questions peoples’ rights as individuals to strive to achieve self-management knowledge and skills. However for people with disabilities and those experiencing chronic challenges to their health status, the history and community expectancy of self-management has been very different. People with disabilities were not seen to be capable of exercising their perogative let alone to be capable of self-governance. They were subjected to disempowerment by extremes of bureaucratic and social paternalism. In these sorts of social and political environments, personal power, one of the necessary elements of self-management, remained atrophied or if it was exercised, was quickly discouraged by a custodian or training officer. An example of this that comes to mind is the time I decided that I was ready to learn how to move about my environment safely so I could have some independence and privacy. I arranged with a major rehabilitation organisation to participate in a skills development program for four weeks. I was required to ‘live in’ and I was very excited about the whole thing……until the second day. On the second day I realised that I was only going to have one or two hours of mobility and long cane sessions every other day. The rest of the time I was ‘rostered’ to basket weaving and recreational activities. I was very disappointed and asked for more. I was told that if I didn’t like it I could leave. There was never any negotiation or explanation about the matter.
From the discussion to date it can be seen that there is a dissonance between a rights model, which orients people to achieving and retaining the maximum quality of life possible within the limits of impairment, and the scientific biomedical model which claims authority and control over its perceived domain and which is still used by many health professionals.
The power imbalance in medical relations is shown in research into British G.P.’s attitudes towards preventative health services within a primary health model conducted by Williams and Calnan (1994, p.374) who found that:
“……the most prevalent form of relationship appears to be one characterised by a dominant and active doctor and a passive, dependent patient leading to the dominance of the doctors perspective over that of the patient……this is perpetuated by the lack of information which doctors give patients; something which is tied to issues of professional power, status and authority.”
This sort of entrenched mindset, the assumption of power and control and the superordinate-subordinate relational expectations embedded in such views all contrive to perpetuate the dependency of all of us, (entire populations) on a health services system which no longer seems to be able to meet our learned expectations or needs and which we can no longer afford nor necessarily see as desirable. The control of doctors over my life and some deeply hidden prejudices was revealed when I went for my physical assessment prior to being accepted for guide dog allocation. At that assessment the doctor wanted to know if I took any medications. When I said no he was alarmed and asked about oral contraceptives. When I said no he became very agitated and said that under no circumstances was I to get pregnant now that I was blind, that I would never manage, that I should have a tubal ligation. Two years prior to this I had seen this same doctor about a tubal ligation. He had flatly refused to contemplate the procedure.
It seems that we have a health service system where many of the practitioners are steeped in paternalism and expropriation of client autonomy. It is a system which has created public dependency on the service providers ability to meet the individuals health needs; one which has increased the public’s expectations of a service range and delivery that can no longer be met and which the community can no longer afford. The expense is measured by governments and health administrators in dollars but the real cost is in human damage, misery, false hope and increased morbidity.
The values and beliefs embedded in the world view during this health service system have impeded the ability of this society to be collectively responsible for, and proactive in meeting, its’ health needs. The powerfulness of the few in health service provision has led to the powerlessness of the many to influence health changes in heir lives.
A shift in focus will have to occur if the basic health needs of this population are to be met. There is no question that there is going to be an increase in demand on health services as the population ages. An enormous challenge confronting Westernised high technology, individualistically focused health service systems and therefore health service practitioners working within the system, is the Age Wave: for example, in North America in 1980 12% of the population was over 65: by the Year 2000, 20% of the population will be over 65 years old and 5 million of these people will be 100 years or more (Clark 1994). In Australia last year, 15.7% of the total population were over 60 years old and 50.9% of these people had a disability. The proportion of people with disabilities in this country in 1993 was 18%. The Australian Bureau of Statistics (1994, p.3), reports that: “Disability and handicap are strongly related to age. The rates for both increased rapidly for those aged 45 years and over.”
Instead of creating dependency which is unacceptable, unaffordable and unserviceable, the system will need to embrace a philosophy or world view that encourages social integration and self-mnagement as service outcomes for Australians living with chronic diseases and disability. For effective self-management to become a real option and an ordinary reality for people with disabilities and chronic diseases, power sharing has to occur.
From our position as disability rights activists and advocates a world view that conceptualises health as a right, a shared personal and community responsibility, which is based on principles of equal opportunity and socio-economic development would be like a dream come true (Murray 1993). Such a conceptual model does exist. It is based on the principles of equal access, empowerment, cultural sensitivity, self-determination and community affordability known as Primary Health Care (Wood 1988). At the micro level of health service delivery introduction of case management, ‘a process of managing patient care which fosters collaborative relationships between patients, caregivers and the community’ (Petryshen 1992: 1193) is a strategy which appears to be in accord with the key principles of primary care. How it is interpreted and whether the equity principles are hijacked will depend to a large extent on the mindsets of those responsible for the introduction of managed care into health service delivery units. The mindsets of direct care providers will also influence whether the patient is placed at the centre of the service is defended or whether other professionals take centre stage.
This model is not well received by all health workers because it strongly challenges the base and mindsets of the ‘key’ decision makers. Power and decision making is to be shared in this model. Empowerment is a ‘social process of recognising, promoting and enhancing abilities to meet their own needs, solve their own problems and mobilise the necessary resources in order to feel in control of their own lives’ (McMurray 1993).
It can be a shocking experience for some to have to share power and decision making with people perceived by them to be subject to their authority. Self management is underpinned by notions of empowerment and personal sovereignty and independence.
Pearson (1992:1) sees “independence and wellness as modes of being which are fundamentally grounded in power” and goes on to say that:
“health and welfare workers who seriously wish to promote independence in clients and who view wellness as their goal, no matter how worthy, moral or logical this may seem, simply have to confront the power of the few and the powerlessness of the many. In other words, promoting independence is a political business because it involves power sharing.”
Personal sovereignty, independence and empowerment rest on the bedrock of democracy which can be said to exist where there is “a state of society characterised by tolerance towards minorities, freedom of expression, and respect for the essential dignity and worth of the individual with equal opportunity for each to develop…to fullest capacity in a co-operative society”. (Webster 1963).
In the light of this definition one has to contemplate the efficacy of current health service and policies in Australia when you have situations where a specialist centre, providing services to people with chronic pain, could be closed because it is not making profits and has a small turn around of clients. This is seen to be an example of “a production line approach to health” (Whiffen 1994). It would seem that the worth of individuals is being subsumed to the value of efficiency and that co-operative, consultative processes of health policy have been replaced by unilateral decision making. Bergthold (cited in watt 1990) points out that the corporate elites have an increasing influence on the content and implementation of health policies whilst access to policy development and available choices to the public is reducing correspondingly. Carey (1987) suggests that “the growth of democracy; the growth of corporate power; and the growth of propaganda as a means of protecting corporate power against democracy” will as three distinctive developments of the 20th Century.
Navarro (cited in Watts 1990) defines democracy as “the set of relations and institutions which permit the citizenry to control their own lives”. This indeed is the state of affairs to which people with disabilities and chronic illness aspire. These aspirations of democracy will be impeded for as long as the mindset exists where health is viewed as the absence of disease and where the professional expert presumes to be in charge of other peoples affairs. Wiers (1990) suggests “that powerlessness may lead health workers to be bossy, rule-oriented with clients and their families as well as with other health workers.”
The process of professionalism is defined by Bilken (cited in Watts 1990) “as the marshalling of exclusive control of the helping process, thereby creating and reinforcing social hierarchies that elevate helpers and create dependence in the helped. Therefore no social change or empowerment of the helped to assert themselves can occur”. The need for resolution of the tensions between democratisation and professionalisation within nursing was raised for discussion in 1987, by Patricia Moccia, a prominent nurse theorist at a time when nurses were examining the implications of the power dimensions of their role and relations with clients. Margaret and I assert that it is time overdue for all in rehabilitation service provisiers to examine their philosophies, policies, practices and prejudices to assess whose needs they meet and what may need to be changed so the clients needs can best be met.
For health workers to make a difference the power imbalance which exists between them, the services they provide and people who need access to those services must be recognised. The inextricable link between health care, power and politics cannot be denied.
During period of my rehabilitation, many many things at the interpersonal level were left untouched, untutored and I found myself socially and politically under resourced. This and political naivety became my biggest and most painful impediments to reintegration into regular social relations. The resources Margaret and I found useful for effective participation in society were not found in ‘the system’ but from all over the world through a network of other people with disabilities who had journeyed ahead of us. We learned how to think differently. We learned how to be self-managing. We learned to be ourselves. Whilst the management of daily living patterns were important and enabled us to manage our existence more effectively, our true re-connection with our world came about from interpersonal and conceptual ski8lls development. Becoming aware of, believing in the possibility, and learning how to negotiate the personal and the political is very empowering. Its health supporting.
How we see the world, the rules we use to filter and interpret meanings have a very strong and lasting influence on what we think and believe is possible and acceptable. People with disabilities are seen to be dependent on others if they have a personal care attendant to assist them with their grooming but you don’t think twice about yourself or your friends purchasing a massage or a manicure in a haircare salon. People used to think that I had my ironing done because I couldn’t do it. The truth of the matter is I don’t want to use my time doing ironing. People using the meals on wheels service are seen as dependent. People using pizza home delivery are not stigmatised in the same way. Clearly, double standards exist, two sets of rules with which to interpret the meanings of actions: one set for explaining the actions of people without disabilities and another to explain the actions of people with disabilities.
Primary health care, as a philosophy and an approach to health care, values and provides plans for implementation of services based on the principles of equity, affordability, individual and community participation and empowerment. Among other things the political will of health workers is required for it to be effective. People want to belong, to join in, to be part of life and society and to have a say in those decisions that effect their lives. Empowerment enables this to happen. Primary health care as a world view is an empowerment model. The sticks and stones lurking in outdated mindsets and stigmatising labels are breaking not only peoples hearts and spirits but the health system itself. The mindsets are anachronistic, undesirable and unaffordable in contemporary society.
If as Emener says (1991) : autonomy, freedom and independence are the by-products of effective living and the heart of happiness in life, then empowerment is the backbone of rehabilitation service delivery.” It is recognised in Australia that in order to empower others, health professionals “must be empowered to overcome the restraints of their own environments” (Watts 199). We would like to move peoples thinking beyond the notions of the least restrictive environment to those of the most empowering of options. Individuals do have the ability to influence the general focus of those policies and laws. Is your focus one of acceptance and partnership or is it one of power and ascendancy?
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