Living as a disabled person in our society raises many challenges — physical, economic, political. The struggle by disabled people to escape the medical model and enter the paths of integration have not been easy. This paper explores options for participation and consumer impact.

December 1983 – Australian Health Review, Volume 6, Number 5

19th century institutional control of disabled ‘inmates’

In this paper, I suggest that to thoroughly address the reality of future health services for disabled people, we need to examine the past and our present in order to establish underlying dynamics and issues which will continue influenc­ing the shape of future models. Further, I believe we can categorise the major dynamic of the 19th and 20th centuries by the way people related to and controlled disabled people.

There is little doubt that the 19th century was the century of the institution — the prison, hospital, asylum, factory, school, military organisation and workhouse. Although these performed separate functions, all shared common architecture, modes of organisation and aims. These institu­tions removed the individual from the social environment and established total control of physical movements, use of time and space. The aim was total discipline over their ‘inmates’. For any aged or disabled person whose family could not support them, this was the community solution to the problem they posed.

Conversely the removal of the deviant to an institution also meant that the forces which created the problem could maintain their position uninterrupted by negative reminders and rebellious individuals.

20th century – the rise of the ‘helper’ industry for ‘clients’

The 20th century saw the evolution of a more individual, subtle approach. This is the century of the helper. Not only the new helping professions — social work, vocational guidance, clinical psychology, occupational, speech and physiotherapy but also the older professions — medicine, law and the ministry have redefined their practice in terms of their helping function. Governments too have become involved in helping on an entirely new scale. The mechanism of control for our culture is not the crude one of confinement, but rather the ability to authorise and decide intervention and outcome. Thus, we see the rise of “helping” has coincided with a rapid rise in a professional class on the one hand and the definition of a client group on the other.

Just as the institution had its heyday and has now fallen into some disrepute, the ethos of the 20th century helping professional, is beginning to wane. Early in the 1960s, writers such as Illicit were likening the extravagances and the wasted opportunities of the professions to the 19th century wayward son blowing the family fortune.

Hope for the 21st century to be one of self-reliance for disabled people

The trends which will shape the next century are already beginning to emerge. I hope that the 21st century will become known as the century of self-reliant development.

It is perhaps easier to see these trends in the international arena, where the old alliances and understandings of balances are being realigned. Those who were receivers of help as “aid” found that not ony did it have a cost far beyond the need to repay, but it also led to an attitude of continued dependency.

Over-reliance on service model that creates dependence

In Australia, surely we must reverse the trends of more and more people seeking service and government-financed assistance, or else we had better develop a bottomless money pit to be “on stream” by the year 2000. Even if we could afford current service provision trends, do we really want a society of people basically dependent on the help of professional experts through the provision of services from government finance?

What can be learned from the mistakes of current systems in which people are being made increasingly dependent? In the area of health care, perhaps people like Gerben De Jong, in his survey of writers Parsons, Gordon, Siegler and Osmond, can help us understand the fallacy of our current models. Although some of his work is now several years old and seems a rather rigid construction of reality, it is worth repeating.

The medical model explained

The medical model consists of the following assumptions and role expectations:

  • The physician is the technically competent expert.
  • Medical care should be administered through a chain of authority wherein the physician is the principal decision maker; accountability for the care of the patient is centred on the attending physician.
  • The “patient” is expected to assume the “sick role” that requires him or her to cooperate with the attending medical practitioners.
  • The main purpose of medicine is the provision of acute/restorative care.
  • Illness is muted primarily through the use of clinical procedures such as surgery, drug therapy, and the “laying on of hands”.
  • Illness can be diagnosed, certified, and treated only by trained practitioners.

The sick role explained

The sick role consists of two inter-related sets of exemptions and obligations:

  • A sick person is exempted from “normal” social activities and responsibilities, depending on the nature and severity of the illness.
  • A sick person is exempted from any responsibility for his or her illness. He or she is not morally accountable for his or her condition and is not expected to become better by their will.

These exemptions are granted conditionally. In ex­change:

  • A sick person is obligated to define the state of being sick as aberrant and undesirable, and to do everything possible to facilitate his or her recovery.
  • A sick person is obligated to seek technically competent help and to cooperate with the physician in getting well.

The sick role is expected to be a temporary one. For the long term or permanently disabled person, there is no immediate recovery or restoration. In this situation, the disabled person begins to accept not only the condition as aberrant and undesirable but also their very personhood. The dependency role in the sick model has developed becoming the normal, thereby removing the obligation for people to take charge of their own lives.

The impaired role explained

The impaired role is not a normative one or one prescribed by the medical model, but is a role a disabled person is allowed to slip into as the assumptions of the sick role are weakened by time.

Thomas Mann described this state in his novel The Magic Mountain:

“The impaired role has a lower status than the sick role, but in return (or this childlike status, they are allowed to spend their days as children do, playing card games, taking up hobbies, having meals served to them, playing with each other, or, most often, doing nothing at all”.

Negative expectations set by common language around disability

The very language in which we think and talk to disabled people expresses society’s opinion that they are different, special, in need. These attitudes in turn influence behaviour.

  • You are a ‘patient’, therefore be patient, passively accepting treatment, etc.
  • You are ‘handicapped’, therefore come cap-in-hand subserviently and we will send you an in-valid pension.

I haven’t even mentioned cripple, infirm, imbecile or the 64 other terms littering our Australian legislation. Do these words conjure up images of independent, skilled, valued people? After a while, disabled people usually find it easier to stop fighting back the subtle put-down messages and become “in-valid”.

People with disabilities are initiating change together

In recent years, however, disabled people have begun to see signs that changes are coming, that reforms are underway to attempt to break down some of the barriers experienced in the past. IYDP was a watershed year, particularly here in Australia. People with disabilities began to come together, effecting policy in areas where they are involved. Physical access, especially in the public sector is improving. Some employment opportunities, even at the level of tokenism, are beginning to create an awareness about the ability of people with disabilities.

In 1981, an international body was formed, linked to the United Nations and run by and for people with disabilities. Disabled People’s International (DPI) was established by an Australian National Assembly in 1982 to develop “a voice of our own”. This organisation aims to bring all people with disabilities together to form a powerful lobby group. DPI plans to make known to the health industry the requirements and priorities of grassroots consumer groups.

Ethical issues around disability

If disabled people are going to be effective participators in the year 2000, I believe we need to step back from some of these current positive signs and to re-examine some basic ethical and policy assumptions. In the past we have worked on the form and substance of policies, without seeking substantial agreement about basic assumptions at the root of community life. Sooner or later we will have to face up to some very difficult issues, questions of even large meaning and purpose.

Our society and medical ethics promote preservation of life as the main objective, but what consequences does this have for disabled people?

  • Do people with disabilities have value to our modern society?
  • If so, how do we show this?
  • If not, and people are maintained alive yet in-valid, what quality of life should the community compensate for this decision?
  • Should disabled people be, as David Hall asks, “managing justly or just managing”?

For disabled and aged adults who want the right and choice to end their lives, there is positive discouragement. Suicide is against the law and information on how to end your life, available now in the UK is prohibited here. If suicide, euthanasia, mercy killing are not condoned, then those who make that decision are logically responsible for the kind of life that is possible for those who have to live that decision. The ethics of decisions of this nature flow on to unborn children, as well as people with disabilities.

Long history of disabled people being culled

It is an unpalatable issue, but one which has surfaced in other times and places. Nomadic people left behind the weak, sick and aged thereby protecting themselves from disease and much genetic transference. In Hitler’s Germany, those who were the weak, physically and intellectually disabled, were systematically moved through the gas cham­bers. The impairments visible in disabled people, which act both as signs of human limitations and the ability to overcome them, were an anathema to the cult of the Aryan, the perfect race.

This extreme example may seem far-fetched from Australia today, but our image-makers are not renowned for including the wider range of human shapes and faces in their publicity. The young, beautiful, active are promoted, leaving the bulk of people restless with the frustration of attempting to recapture these qualities. Our society seems happy to pay off its conscience money, raised through taxes and charity, in order to keep some of its particularly worrying people away from sight, those with obvious physical and/or mental disabilities.

As we move into the 21st century, we must ask ourselves what type of society we want to fashion and what basic rights we stand for:

  • Are we prepared to support the value of each human life in its own uniqueness?
  • Can we enlarge the concept of the multi-cultural or pluralist community to include as neighbours those with deformities, mental and physical limitations?
  • In doing this, what are we learning about ourselves and our human condition?

Policy issues that need a shake-up

Parallel with these underlying ethical questions lie a number of problems and policy issues which affect the way services for disabled people are organised.

The current dominant model of rehabilitation certainly provided grounds for great leaps forward in people’s ability to live and work in society. It grew from small beginnings in response to crises such as the polio epidemics into a large, sophisticated industry organised around several health and education professions. These professions, singly and in multi-discipline configurations, serve to legitimise the rehabi­litation function.

Between them, the disabled person is carved up — legs to the physio, hands to the occupational therapist, mouth to the speech pathologist, etc. The person with disabilities is segmented and controlled by those on whom he becomes dependent for treatment. Treatment or therapy is the operative mode. This correction of deficits in a sense implies blame on the patients for their lacks and failures, for which they can never feel success.

The normal reciprocal process in our Western world which operates on supply and demand is that neither the supplier or the demander can exist without each other. Thus, it is in the interest of the helpers and the helping industry that they forever continue to seek out and enlarge the boundaries of those they are paid to help.

Opposing interests of service providers and disabled people

In a 1982 international survey of the state of independent living, it was shown that more progress was made when communities openly acknowledged and accepted the di­ametrically opposed interests of the service providers, professionals and their training institutions as against the need for independence of people with disabilities and aged people.

Currently consumers are encouraged to think that if they are disabled they should expect and be grateful for help from a rehabilitation system. Those with too many problems or who are too difficult to interact with — such as young head-injured — are usually dropped out of the system. The sheltered workshops have found that as the pressure for productivity has grown, so the nature of their workers’ disabilities changed. They and other sections of our government-sponsored health-care industries have progres­sively dropped off the too-hard or expensive groups of clients in favour of the more easily rehabilitated.

The problem for disabled people caught in this net has been magnified when finances have not allowed for a widening of parameters by the professional groups and policy has been based solely on expediency.

The independent living movement growth from rehabilitation/charity model

The contradictions and inequalities of rehabilitation have provided the fuel to ignite the independent living movement around the world. Its cost and professionalised super­structure together with lack of results, have angered people with disabilities and helped to delineate the independent living movement towards self-care, maintenance, integration and normalisation.

The scenario of both the growing numbers of aged and disabled people and a high-cost system that delivers a less than satisfactory outcome, presents an unpalatable social reality as we head towards the year 2000. If we do not move away from total dependency on the professional model, we are going to need that bottomless pit.

I believe the basis for the change we require is largely dependent upon who is consulted in future policy-making. Value-free change just does not happen.

A few years ago, Adelaide had more cat-scan machines than the whole of London, at a cost to the rehabilitation industry of some quarter of a million dollars each. This cost was incurred within that industry by a consultation process which reflected the views of only the most powerful players — the doctors at the top of their hierarchy. I would suggest that most of our current difficulties, particularly in relation to cost, stem from professional and diagnostic groups being the only answerers of the questions.

Consumer-instigated policy development and consultation in the Third World

Crucial to any successful change will be a process I call “consumer-instigated policy development and consultation”. The key to this process is an awareness by policy-makers of the motives at the source of advice and the relationship of those motives to the “grassroots” problem. The realities of the 21 st century will relate, I believe to the way we respond to this challenge.

We can see the benefits of this listening process in the ideas and plans of disabled people within the developing countries. In an IYDP book from Nepal, the Nepalese ask what can be learned from mistakes made by others when planning an efficient program? Their solution is a structural base which consists of “low-cost, non-professional, non-institutional, non-segregating and experiential rather than imitational foundation”. We need to listen to involved people from these least developed countries who are saying politely, “no thank you”, to the intricacies of Western rehabilitation. They are asking for simple attention and assistance which does not involve either pity or overconcern with assessment, research, and technique.

Our Western idea of “independent living” simply doesn’t translate to disabled people in non-industrialised settings. Why would anyone, they ask, want to live alone and apart from a family, especially when in obvious need of support? The disabled movement in the Third World is calling for community and family-based development, self-reliant infor­mation on appropriate technology made of simple, local materials together with appropriate visual and oral teaching material for non-literate cultures. Disabled people see themselves as the best people to demystify the myths, unlock the resources in friends and families, while at the same time acting as models of positive, active participants in community life.

What can we in Australia do to hasten this process? First, we can support overseas and Aboriginal primary health care programs which prevent much disability and intellectual disability before they occur by assisting with such simple requirements as adequate water supply and nutrition, safe sanitation, immunisation and family planning.

We can also scrutinise our aid programs to make sure they are enabling disability development which supports the low-cost, low-professional, non-institutional principles. We do not want to be seen as the more-of-the-same, old-style colonial rehabilitators training up an elite class of profession­als within developing countries who will in turn copy our expensive institutionally based, inappropriate models. Unfor­tunately the Australian Development Assistance Bureau (ADAB) is presently supporting several of these inappropri­ate programs.

Reforms needed in Australia

Turning now to our national arena, in what ways can we model future development reforms in disability health structures? Firstly, I think we need to redouble our support for self-help, in whatever form. The principles behind self-help have proven valuable over the years, in reducing dependen­cy on others and as a cost-effective way of dealing with societal problems. Self-help is a process which gets better with practice and is contagious in its best forms. If we see the 21st century as an era of self-reliant development, the time is ripe to prepare the way with people skilled in attitude and practice.

Disabled people and Labor governments are committed to the process of normalisation of human services. The recent Sax Report has also recommended this philosophy to the SA Health Commission. Personal experiences of gaps and deficiencies in large-scale segregated projects have taught disabled people that ‘small is beautiful’.

I would hope the current handicapped programs review is in fact the first of a series of giant steps forward. Other steps forward will occur when a number of changes are made to the various workers’ compensation acts. To make way for some of the new developments, some of our older systems may have to give way.

Rehabilitation, as we have known it, is on its way out. It is a cost-prohibitive, octopus-like creation, which ensnares any captive-looking market. Its record of outstanding successes is dismal. In fact, most successful people with disabilities who have achieved, have done so without passing through rehabilitation doors. Today rehabilitation in the public mind is more often connected with prison reforms or drug-abuse programs.

In contrast, the maintenance model of development for people with disabilities seems more in tune with the realities of future requirements. The diagnosis, etiology, treatment and rehabilitation of clients are only marginally relevant. The overall major concept is to maintain remaining functional abilities with the responsibility for that process in the hands of the disabled people themselves.

Foreshadows principles of a market-based disability economy

A maintenance model would rely more heavily on the normal market processes of our community, where control is largely in the hands of the purchaser. A policy which gives the disabled consumer purchasing power would break the current nexus where service supply determines demand rather than demand directing supply.

It is generally acknowledged that disability brings with it an extra cost structure incurred in compensation for function­al limitations. Since 1981, disabled Australians have advo­cated as an option this type of normal consumer model in the form of a disability allowance. A base allowance would have components for equipment, home modification, trans­port, attendant care, and other requirements added to it. In the long run, a disability allowance direct payment should have a cost-suppression effect on the costs of care. More importantly it would develop independent disabled people.

Empowerment for family support

Another aspect of the maintenance model is an interest in the balance of family obligations as against public initiatives. Should we not be tipping the scale away from costly large-scale rehabilitation and institutional facilities, towards reinforcing and encouraging the potential of families in relation to their aged and disabled members? The family after all, has superior organisational adaptability to respond to a range of demands with flexible arrangements, plus an in-built interest in the welfare of its members.

Family care has fallen into disrepute through a combina­tion of government disincentives, inflation, the economy and contemporary views of individual selfrealisation for all family members to work away from home. Modern housing and community planning have added to the problems.

Our Prime Minister, in the 1983 Curtin Memorial Lecture, outlined the Government’s grand plan for Australia and the need for Australians to understand that change is inevitable. Mr Hawke said, “At least equal attention must be paid to the question of reducing the demand for jobs by helping provide socially constructive alternatives”.

I think we must look again at the potential in the family both as an optional alternative to institutional solutions and as a positive, “socially constructive alternative” for the requirements of many aged and disabled people. The feminist revolution doesn’t preclude such a development either but rightly necessitates designing any such roles with dignity and social approval. To make family care a viable option families should be enabled by a redistribution of public sector support with cash direct payments to cover necessary expenditure involved in caring roles and given access to appropriate and adequate local information, resources, and respite care.

Institutions vs home care financing – out of proportion to reality

Although the 1981 ABS Survey shows that only 9% of disabled Australians are supported in institutions, approximately 90% of all public support for chronically aged and disabled people goes for purchase of institutional care. It is interesting that the same investment proportions apply in the USA. The ready availability of institutional financing combined with the relative lack of home-care financing and lobbying has channeled a disproportionate demand into the institutional sector. The ultimate distribution of service and dollars become a by-product of funding mechanism rather than a response to demand. The shift from institutional to home care will require planning a more flexible approach, integra­tion of the tax system, vouchers, direct allowances and grants with small-scale enabling community networks.

This enabling process through redirection of money to community/home-based care of elderly and disabled people from a limited pie, will mean that some current prestige, high-technology and therefore high-cost areas may have to forego some of their allocations of resources.

Rationalising roles of the three tiers of government around disability

Another future challenge is to integrate the capacities and opportunities provided within our local, state and national three-tiered governmental structure. Both the recent Jamison and McLeay Reports have highlighted the possi­bilities inherent in these systems, but clear decisions and leadership are needed to give these macro-service providers the best chances to assist people first.

At the local government, institution, hospital and agency level, there must be a greater commitment to democracy in action. Health services and institutions have a responsibility to take the lead in increasing consultation and participation throughout with all consumers, including disabled people. Employment of disabled men and women for example in the health sector is a vital sign of healthier attitudes and awareness. Creating possibilities for consumer disabled involvement in decision-making forums will be high on the list of challenges for the leaders in tomorrow’s health industry.

‘Help’ and its role in enabling self-reliance

In the end, assistance, aid and concern all boil down to one word: “help”. That is something which at the individual, person to person level is often difficult, both to understand and to do successfully. I would like to conclude with an analysis of ‘help’ to reinforce the ideas of self-reliance which all people will need as we rush towards 2000.

When a person or group either don’t use, refuse, or use our help unwisely, it’s tempting to think that there must be something wrong with the recipient. We may feel they are weak, ungrateful, unworthy and not in need of help. We may even feel they need a good kick in the pants and be left to suffer their own consequences. This attitude of course, developed the theory of the English Poor Law with its workhouses for those who wouldn’t accept charitable philan­thropy.

If we can’t fault the recipient when our help is ignored, then we turn to the kind of helping product we have supplied and question its appropriateness. The last thing we tend to look at is the process itself. This kind of evaluation has led to a stratification of ‘help’, where tangible, practical help is down-rated and intangible is elevated. In other words, money is bad, help and advice are good!

The word ‘help’ also has a secondary meaning, not to do with what is given, but with how it is given and used. When help is given to people who are categorised or labelled in relation to their dysfunction from the norm, then that help is often in the nature of control. The helper in turn sees this labelled dysfunction as failure and takes on the job of restoring the person to some desirable or acceptable condition.

I would suggest that help which does not control is a fundamentally different process. It is something which cannot be given. It is something a person finds, acts on, and makes their own decisions about. A helping relationship is charac­teristically a mutual, not a one-way relationship. This means that the relationship is not necessarily consistently pleasant or friendly.

The implications of these definitions are potentially devastating to the way many of us construct our relationships with our spouses, our children, our workmates and neigh­bours. The smug assurance of the, “I know what’s best for you” parent or professional evaporates in the context where each person assumes responsibility for their own actions.

Model of successful helping

What then, for each of us, would constitute successful helping? There are three basic and intertwined factors in all successful help:

  • Reality — that is, no-one can solve this problem but you.
  • Empathy — this is what you want.
  • Support — I am here to help you, not to control you.

The element of reality when working with physically or intellectually disabled people is one of the most difficult challenges. But it is crucial. Reality means not discounting another’s problem, not taking it away by believing it is unimportant. Too often we say, “you’ll forget it soon”. But to be real means facing problems in all of their ugliness or terror. You honour the person by taking their problem seriously.

Another form of taking away a person’s problem is to solve it or insulate them from it, a practice rife in our current health system. If people are to grow, they need to solve their own problems to their own satisfaction. It used to be good medical practice to allay all fevers, but now we know a fever is the body’s way of fighting infection and thereby building immunity. So with disabled people, we don’t do them a favour in sparing them disturbances.

Reassurance is a natural protective reaction that people display towards those considered vulnerable or lacking in real strength. Yet reassurance is a common form of non-reality. False reassurance, far from strengthening a person’s ability to handle problems, effectively disarms them and robs them of the anger of despair needed to deal with them.

Culturally and professionally, we are trained to avoid conflict and pain. It is hard in facing a disabled person to inflict what we may feel are painful and conflicting thoughts. In my experience, what disabled people usually want from people in authority is honesty. Being indirect is a form of non-reality that too often slips into evasiveness or even gentle manipulation. Next time you find yourself giving a “tactful” or “considerate” reply, ask yourself how this form of non-reality is really helping and whom?

Help, to be real and successful, is presented without justification. In the hospital setting in particular, we should avoid rationalisations, such as “it’s for your own good”, “we have to be fair to everyone”, “you’ll find out eventually this is the wisest course”. We have to face self-consciously the programming of our society about being nice. Although facing reality with someone often feels like being mean, it can be the best help.

Attributes of a successfully helpful person

What makes a helping person tick? Perhaps it is “the ability to postpone personal satisfaction in the interest of the person one is helping, to accept it where one finds it, not to insist on it, and not to let one’s desire for it get in the way of the primary business”.”

I think too, it is being able to sort out the mix of emotions involved when you are confronted with the situation of disability. ‘Sympathy’ is a weak emotion. It just confirms the weak person in his weakness. ‘Pity’ on the other hand, emphasises difference: the helper, who is lucky or better versus the helped who is unlucky or worse.

Somewhere in the continuum between these poles lies ’empathy’. Empathy is a strong and strengthening emotion. It involves listening, acceptance of what is, knowledge and acknowledgement of that individual. Empathy is a key tool as it unlocks the potential of the person to help himself.

Support is the last vital element. Disability is something which can occur to any of us at any time and will effect all of us before we leave this life. Therefore it is in your interest to put yourself in the position of people with disabilities that you meet — it could and will be you. Measure the type and quality of assistance you offer by the definition of support: “I am here to help you, not control you”.