The Disabled Consumer Movement: Policy Implications for Rehabilitation Service Provisions
Jim Derksen, Winnipeg, 1980
Contents
I. Service Provision and Ethics
1. Privately Funded Service Providers
2. Governmentally-Funded Service Providers
II. The Emerging Consumer Ethic
III. Strengths, Potential Benefits and Appropriate Roles of the Ethics
IV. Some Prognostication of Future-Policy Directions
2. Independent Living Services
Rehabilitation is narrowly defined as treatment to restore health. The disabled consumer movement's goals are assumed to be the greatest possible degree of independence and integration in the community. The movement's mandate thus is larger than, but inclusive of, rehabilitation. Policy considerations are assumed to derive from value systems/world views or "ethics". Policies for service provision are perceived as evidenced by program design and as more the function of the funding source than the service delivery level. Privately funded, governmentally funded and cross funded service providers are then examined in turn for the problems in relation to the goals of maximum independence and integration presented to each by the charity/volunteer ethic, the medical ethic and the professional ethic. The consumer ethic is discussed as emerging in the context of these problems for all categories of service providers. Strengths, potential benefits and appropriate roles of the four ethics are discussed and future policy directions and implications of the disabled consumer movement for rehabilitation service provision are predicted.
The individual who becomes permanently physically disabled in Canada today finds himself in a bewildering, new and different world: a world where he is no longer responsible for his family, for his personal financial needs, for his behaviour, for most of the things he had been responsible for as an adult person in society. Gone with these is his right to expect equal social acceptance as a responsible adult human person: 1. the right of political and economic involvement in society; 2. the right of access to public buildings and programs; 3. the right to equal access to private services and facilities; 4. the right to travel freely; 5. the right to choose his employment and associates; 6. the right to sexual expression, and so on. All are gone, or at least diminished.
He finds that he is expected to play a very specialized recipient role in relation to charitable givers. In place of the dignity of-his selfsufficiency he is expectd to exhibit a passive gratitude for what others choose to give him.
This same person is expected to accept the permanent nature of his disability despite the fact that in a thousand ways each day society and the helping professions that cluster around him reinforce the idea that he is in fact sick and expected to get better. The idea that his disabled condition is at fault is constantly implied by those around him. He is told that his problem in him can be remedied by rehabilitation and that to effect this rehabilitation he is expected to accept the counsel and advice of a wide variety of professionals. These range from medical doctors through social workers.
Despite, in some instances, his many active years of employment in the competitive market he is assumed to require employment preparation and may be placed in a centre for this purpose. If the humiliation of being supervised in the sorting of screws or similarly dull work is enough to cause him not to perform well enough, he may be judged unready for the job market or unemployable and be assigned to sheltered workshop employment. If his family and he are sufficiently demoralized by his new situation in society he may well accept residence in a nursing home or special rehabilitation housing project. Similarly, if he is not wealthy, and his self-concept is sufficiently distorted by society's stereotype of him so that he forgets his tax dollars contribute to public transportation and that he has right of access to it, he will accept in its place a special trip now and again in a bus most often operated by some charitably-minded service club. If he is disabled as a child, he may well find himself being educated in a special school for disabled children where he will learn that his only peers are other disabled people and of the real distance and gap between disabled and able-bodied society.
Altogether he will find that ail the arrangements have been made often by his social worker and the other professionals in one large "rehabilitation" service agency which offers or controls, comprehensive diagnostic/evaluative, educational, training, employment, housing, recreational, transportation, and social services for people with his kind of disability. He will be rehabilitated in his special housing, at his special sheltered workplace through his special charitably-funded rehabilitation transportation system. Even his leisure time will be organized to rehabilitate him by special therapeutic recreologists. In short he will have no need to make any more decisions. These will be made by a multitude of professionals who will rehabilitate him from the point of his disablement to the time of his death.
What will occur if this disabled individual does not accept the arrangements that have been made for him? What will be the result if he demands that the permanent nature of his disability be accepted by those around him and by society;if he says he is not sick and should not be treated as a sick person? Who can predict the shape of things to be if he will demand to be held responsible for all the things that adult people are expected to be responsible for in this society; and what will happen when he demands his right to participate in every aspect of society?
The disabled consumer movement represents a multitude of such people who do not accept the situation they find themselves in and who question it. This paper will attempt to describe some of the implications of their questions. In so doing, it will begin to describe a new vision of the The This world with disabled people "part and parcel", participating in it. viewpoint will be that of a physically disabled Canadian consumer. viewpoint redefines certain key concepts.
In this paper the word "Rehabilitation" will be used in a more truncated sense than is currently fashionable. That is, "Rehabilitation" will mean the careful and cogent application of efficacious and effective interventions and/or treatments to remedy only the traumatic effects of disablement or birth as a disabled person upon a person and his family's health. Health is used in the larger sense as personal and familial well being and capacity to function in any given environment to potential. The term, "rehabilitation", as used in this paper is assumed to include "habilitation" in the instance of people disabled from birth.
The disabled consumer movement's most basic and central objectives for the disabled individual are assumed in this paper to be independence and integration with the community. Independence implies as nearly as possible the same degree of control and self-determination in day-to-day living processes as are generally available to non-disabled individuals. Integration implies as nearly as possible a co-mingling in day-to-day living processes with society at large, including as nearly as possible use of the comprehensive range of community services and facilities that are available and used by non-disabled individuals. These goals, as defined of independence and integration, will also be referred to by the "independent living" term adopted by the American Consumer Movement.
While the disabled consumer movement's independent living objectives dictate a mandate for the movement which must include rehabilitation as defined above, this movement's mandate must also be larger than rehabilitation and include the environment at large. Environment in this sense includes legislation, societal attitudes, institutions and architectural, program and communications-media design - in short all structures that deny or admit access to disabled people for full participation in the life of society. Although this paper will touch on the mandate and activity of the consumer movement in pressing for legislative and other changes in society at large (such as access to community housing, public transportation and meaningful employment) these will not be emphasized as the topic of this paper is policy implications for rehabilitation service provision.
The distinction between rehabilitation services and these larger aspects of community life is most important to the disabled consumer movement's independent living objectives. Only by limiting the rehabilitation concept to a treatment mode can disabled people assert themselves in society as healthy, "normal" and rehabilitated. At the same time it is most right and appropriate that the disabled consumer movement address itself 'to rehabilitation as defined above. Disabilities nearly always begin with illness: either the illness of traumatic injury or the illness of disease. In the case of people disabled from birth, the cause is still genetic disease or injury in the birth process. Rehabilitation as treatment to restore health is basic, fundamental and in this sense prior to the movement's larger social action mandate and activity.
As the true operating policies for rehabilitation service provision are seldom if at all articulated in so many words, this paper will analyze policy as evidenced by program design and function.
Service providers are categorized by their source of funding. This is based on the perception that the programs of service providers (which are truly at issue here) are generally affected in design more by policy considerations at the funding source than at the delivery level. Policy considerations are seen as derivations of a number of value systems/world views which will be signified as various "ethics".
This paper's first section will discuss, 1. privately funded, 2. governmentally funded and 3. cross-funded categories of service providers and the impact upon each of these categories of, (a) the volunteer/charity ethic, (b) the medical ethic and (c) the professional ethic. During this process, the paper will also touch upon certain dynamics whereby the inter-relation of the funding source with the service provider and the consumer result in system feedback loops which perpetuate and maintain the status quo which originated the system. Each of these ethics will be evaluated as to problems and difficulties they pose to the achievement of independent living. The consumer ethic will be discussed as emerging in and out of the context of these problems for all categories of service providers. Strengths, potential benefits, and appropriate roles of the four ethics dealt with for the achievement of rehabilitation and independent living will be assessed and solutions to problems perceived in the four ethics will be recommended. Finally, this paper will attempt some prognostication of future directions in the evolution of service provider policy.
I. SERVICE PROVISION AND ETHICS
1. PRIVATELY FUNDED SERVICE PROVIDERS
The volunteer/charity ethic is, of course, the one with the greatest impact on these service providers. The programs and therefore the policies of service providers in this category, are sometimes greatly influenced by the nature of the giver; as for example, in some religious charities.
The inter-dependence of the charitable giver and the service provider is so marked that it is sometimes difficult to perceive whether the service provider serves more the charitable giver or the disabled receipents of his service, and which of these services are more important to the process. Examples of this confusion range from refusals by service providers to accept superior resource for fear of alienating a ladies auxilliary group whose members provide an inferior form of the same resource service in a volunteer capacity, to the use (perhaps exploitation is more accurate) of significant portions of charity-drive funds by sponsoring community groups to finance events associated with the charity drive (and the community group) which form substantial aspects of the group's overall activities and which are clearly associated with the enjoyment of community group members in their organization. This latter diversion of the fruits of public "good will" toward disabled people to finance the pleasures of the able-bodied people is generally not understood by the public.
The recent growing alliance of business with'privately-funded service providers is considered to be a potentially ominous symbiosis in its effect on the place of disabled people in society by disabled people themselves. An example of this phenomenon is the Jerry Lewis/Seven-Eleven Stores relationship.
Various charity drives use disabled children (usually with highly visible neural or muscle-based disabilities) to solicit funds from the public. Telethons, and in this country at least, "Timmy" events (originating from Tiny Tim of Dicken's Christmas Carol) are notable examples of this. Until recently and in some cases still, such funds were used only to generate programming for disabled children, causing some adults with disabilities to remark bitterly that disabled people were a lot like cats, "they're cute when they're kittens". The fact that, in most cases, funds generated by these charity drives are now available for programming aimed at all ages of disabled people does not justify the exploitation of this fairly narrow range of individuals from the population of disabled children. Neither does it ameliorate the negative impact of publicity generated by these charity drives on the public mind where the untrue stereotype of a disabled person unfortunately still includes features associated with childhood such as asexuality, passivity, dependence, and incapacity for full responsible participation in society.
The volunteer charity ethic magnifies and emphasizes the difference and gaps between able-bodied givers and disabled recipients. A direct relationship seems to exist between the perceived degree of need and poverty of opportunities and resources in the recipient and the felt sense of magnanimity, self-sacrifice, wealth, health and power of the able-bodied giver. Overall, this feature of the relationship between the charitable giver and the disabled recipient enhances the abnormality of the disabled as perceived by the public mind.
Publicity generated by privately funded service providers during charity drives emphasises "the unthinkable tragedy" of disability and this reinforces in the public mind the tendency to react with fear to disabled people and associate them with death and mortality, enhancing individual and collective avoidance reactions to disabled people common in our society. These reactions are further made possible by the charity ethic's soothing of guilt feelings for the variety of mechanisms of, and for, isolation of disabled people. Among these are the ones generated by the collective avoidance reaction which-result in separate and special programming for disabled people and institutional ghettos rather than participation in the community.
In additon to isolating the disabled population, these special programs, facilities and so on are more useful as gifts to identify the charitable giver and so achieve social status and the self-inflating sensations referred to above, than are gifts which lead to independence and integration for disabled people in the life of society. Such latter gifts would necessarily be diffused throughout society and, therefore be nearly invisible.
Because of its dependence on the continuing need to magnify and stress the differences between givers and recipients and also on society's continuing need to isolate and distance the disabled population because of avoidance and fear reactions, the charity ethic tends to promote policies and programs which elongate and enlarge the rehabilitation process to match these continuing needs.
The impact of the medical ethic on the policies of service providers, sometimes characterized as the medical model of rehabilitation, is also present in privately-funded service providers. The medical model assigns the disabled person a destructive varient of the "sick role". This relieves him of all responsibilities but regaining his health. The "patient" or "sick" disabled person is allowed and even expected to behave in a childlike manner. Like a child, however, he must follow orders; in this case the orders of doctors and the agents or proxies of doctors. Full participation in social, sexual, political, economic and other forms of adult behaviours are denied or at the very least discouraged on the, part of the "patient".
This model maintains and even reinforces attitudinal barriers disabled persons encounter in the community. Indeed, it has probably been the cause of some of these attitudinal barriers.
Despite the fact that after the individual and family have been treated and restored to health (health meaning the individual has achieved personal well-being and potential in physical functioning or, in the case of persons with progressive disease disablements, has achieved a minimal rate of deterioration which has been accepted) there is no sense or utility in the further application of the medical model, does not prevent this ethic, functioning in medical and rehabilitation systems as well as in the public mind, from calling (sometimes subliminally) on the disabled individual in subtle yet pervasive and profound ways to become "well", meaning able-bodied. That this call persists in spite of the disabled individual's inability to answer or respond to it has also contributed to the general elongation and widening of the rehabilitation concept to its present state of attempting a major, all-pervading and open-ended role throughout the life of the disabled person. This call has found fertile ground in humanity's fear and rejection of its own mortality as well as in the western world view (as it is associated with the technological super-culture throughout the. world) which asserts man's inevitable triumph over physical limitations through intellectual dominance over the material world. In defiance of this subtle denial of disabled people's subjective, persistently real experience of human limitations and mortality, the disabled consumer movement has generated the term "T.A.B." to refer to able-bodied people. This is pronounced "TAB" and is an acronym for "temporarily able-bodied".
Despite some of the higher ideals claimed for the Hypocratic Oath, the medical ethic, as experienced by practitioners and "patients" in society today, has often resulted in the perception and treatment of persons as inert and passive bodies to be worked upon (clay, as it were, to be molded or fixed). This idea of people as passive fields for chemical, surgical and other interventions is of necessity some distance from the idea of' people as whole persons with the right of active participation in decisionmaking.
This latter characteristic (of man perceived as meat) of the medical model together with its other features of exempting the "patient" or "sick" disabled person from all adult responsibilities, roles and rights, except the regaining of health, have together contributed much to the problem stereotype in the public mind of disabled people and with which disabled people are so heavily burdened and limited.
The professional ethic is closely related to the medical ethic, in fact, it has evolved primarily through medical and legal societies from the secret societies of antiquity. It is based on the perception that a given field of endeavour or profession is so complex, abstruse and intricate a specialty that only the practitioners thereof can collectively regulate and accredit themselves. This elite specialist expertism has resulted in closed selfgoverning hierarchies in the traditionally "professional" legal and medical fields of endeavour. Professions are exclusively by nature and accentuate the distance and difference between the active decision-making professional and 'the passive accepting "client" or recipient of his services. Professions (collectively in their professions, and individually) maintain control of information in their field of endeavour, often by means of special language such as the use of Latin or the evolution of special professional jargon which serves to maintain their monopoly of knowledge in the field and reinforce the idea in the public mind of their complex, inaccessible, intricate and abstruse art.
The area of rehabilitation services has experienced the proliferation of secondary medical professions such as occupational therapy, physiotherapy, rehabilitation psychology, therapeutic recreology and so on. Other recent professionals involved in rehabilitation service provision are the Rehabilitation Service Administrator, the Rehabilitation Social Worker, the Professional Social Service Program Director and more specifically, related to the privately funded service provider, the Professional Fund Raiser. Other professions recently associated with rehabilitation may not properly function under rehabilitation, as this paper has defined it, at all. For instance, a biomedical engineer adapting a diagnostic tool for use on people with a certain disability could be a rehabilitation professional by our definition; a "rehabilitation" engineer adapting the same tool for use by a disabled doctor could not.
The characteristics of exclusion and decision-making monopoly in the field are common to all of these, and they serve to create, deepen and maintain dependency in the disabled people interacted with by these professions.
'The general result of this proliferation of professions has been the proliferation of separate programs which sometimes work against each other and which, in any case, all demand "clients" in order to justify their existence. Since the disabled population is finite (and sometimes wary of becoming clients) this sometimes results in longer treatment periods which are easily achieved through the sometimes debilitating effect of professional treatment.
2. GOVERNMENTALLY-FUNDED SERVICE PROVIDERS
The charity ethic, surprisingly enough, plays two important roles in the policies and programs of service providers whose funding is completely governmental.
The provision of governmentally-funded services is sometimes limited because the service in question is already being provided through the charity ethic by privately-funded service providers. It is omitted in governmentally-funded service design, both because it is required by a powerful community sector with political influence, namely, the charitable givers and their organizations and also because government can avoid increasing taxes by leaving the burden of certain service provision to the privately-funded service provider. Good examples of this are the refusals to provide wheelchairs to disabled people by many Canadian provinces even though by the widely accepted traditional medical model disabled people are "sick" and necessary health-related equipment is routinely provided to sick people in these provinces.
Governmentally-funded service provider personnel, merely by association of the same services provided, often identify with and, in a sense, benefit from the charity ethic's role model of giver. Although the role of magnanimous or self-sacrificing altruist hardly suits the government bureaucrat, it is half assumed by some and serves purposes already enunciated as well as sometimes camouflaging the lack of effort and imagination to which bureaucrats are sometimes prone.
The medical eithic, pervading the mind of our society as it does, is especially present in governmentally-funded service provider policy and program formulation and design. Governmental decision-making processes take into greater account the perceptions and values of highly educated, traditionally accepted, authority such as are embodied in the medical profession.
In fact the bulk of rehabilitation service provision directly funded by government are rehabilitation hospital centres or wards and nursing homes which are both medical by definition. Because of the debilitating effect of the medical ethic's expectation of the disabled person as generated by the inappropriate assignment of the "sick role" many disabled people who could be participating most fully in society today are presently confined as full time chronic "patients" in nursing homes. The social/human cost of these potentially independent and integrated people reduced to the bleak isolation of nursing home life is most significant and profound.
Other services directly funded by government and sometimes associated in name with rehabilitation such as "vocational rehabilitation" do not fall under the term "rehabilitation" as this paper has defined it.
Certainly the characteristics of the professional ethic as described above play an important role in influencing policies and programs of governmentally-funded service providers. The full range of service providing professions already listed are present in governmentally-funded service provider entities. Specific to this category of service provider is the addition of the professional bureaucrat among the professions represented and impacting upon policy and programs.
In addition to the problems presented by the proliferation of professions serving disabled "clients", the profession of bureaucrat presents its own special problems in its impact on rehabilitation service provision. These problems are generated when the bureaucracies' need to expand requires an expanded number of programs to administer. This often results in separate special programming for disabled citizens rather than improved public programming which is flexible enough to serve disabled citizens. Of course each of this multitude of programs requires clientele which generates characteristics of the program tending to retain clientele in a state requiring service.
Cross-funded service providers are service providers who have both governmental funding and private funding. They represent the most common form of rehabilitation service provision outside of that provided directly by government.
These large recently successful rehabilitation service providers were originally controlled by concerned groups of community volunteers who were often disabled people themselves, as in the case of rehabilitation services for the blind in Canada, or the parents of disabled children. At their beginnings they were most instrumental in persuading government to make funds available for rehabilitation services. Because their base was in the private sector and their initial funding was based on the volunteer charity ethic, such governmentally-funded rehabilitation service programs as were initiated through their lobbying were most often contracted out, often with matching fund features, to these same private organizations. The growing influx of governmental contract funding, resulting in expanded more complex program operations, led to greater and greater dependence by the governing boards of these private organizations on their professional staff. Accountability for policy and program design of staff to elected board of directors who received their mandate from concerned citizen memberships became a matter of legal niceity only. Senior staff of these agencies naturally used the authority of the medical and professional ethics to "advise" program and policy direction.
The Boards of these organizations became larger, met less often, and became more highly bureaucratized into a variety of fund raising and finance committee structures. At the same time the membership of these organizations sometimes underwent a transformation to a more vague form as, for example, in some of these service providing agencies, the members are all those who contribute either directly or through the United Way to the funding of the agency. Although constitutionally and legally democratic and, accountable to the community of donors, these agencies became operationally under the program and policy direction of senior staff. (In some instances, these senior staffs are made up of disabled individuals, however, since t ese individuals are not operationally accountable to any organized constituancy of c-sabled consumers and they are in a vested interest situation as service providers, the agencies employing these people can hardly be said to be consumer controlled.)
In the case of cross-funded rehabilitation service providers, accountability to the governmental funding source is sometimes equally impaired. These service providers control the interface between private and governmental funders. As the case is made to the private donor of funds that government requirements dictate certain policies and programs in order to achieve governmental funding, so also governmental funders are told that private donor requirements dictate certain policies and programs. The point has been made that the privately funded service provider is primarily responsible for policy and program direction to the volunteer charity ethic of the funding source. It has also been shown that the governmentallyfunded service provider is chiefly responsible to the governmental funding source for policy and program direction which is influenced most by the medical ethic. The point now being made is that cross-funded service providers are mainly accountable neither to governmental or private funding source for policy and program direction but rather that such direction flows primarily from the professional ethic under which the staff of these service providers operate.
Because of governmental abrogation of responsibility for administration of public monies by contracting out a variety of services for disabled people to cross-funded rehabilitation service providers and because of society's general need to isolate and hide the disabled population and especially the need of charitable donors to feel safely vindicated for their isolation of disabled people ("they're being taken care of by people trained to understand their problems"), cross-funded service providing agencies have been most guilty of controlling the widest variety of services and opportunities required by disabled people. It is not uncommon for these providers to control pre-school programs, diagnostic programs, special schools for disabled people, family counselling service programs, technical aids supply programs, housing programs, employment preparation programs, sheltered workshop programs, special recreation programs, special transportation services, and so on. Quite often government will require diagnosis and recommendation by such cross-funded service providers for admission of a disabled person to a variety of programs and services ordinarily available to the public.
The stated objectives of one such cross-funded rehabilitation service provider's constitution gives evidence of policies which tend to monopolistic control over opportunities available to disabled people as well as the special and segregated nature of such opportunities, "(A) To use every available means possible to provide treatment and services for physically disabled children and adults of (name of province) aimed towards the fullest degree of rehabilitation attainable for such persons; ... (C) To maintain contact with and obtain the co-operation of all agencies, clubs, organizations and institutions, public and private, with an interest in any phase of the work of the society, for the purpose of making such work comprehensive, complete and effective; ... (D) To engage the interest of particular agencies, clubs, organizations and institutions in the performance of special services for crippled and physically disabled children and adults". In addition to presenting the problems common to privatelyfunded service providers and governmentally-funded service providers, these cross-funded rehabilitation service providers are the worst offenders in elongating and enlarging the concept of rehabilitation.
II. THE EMERGING CONSUMER ETHIC
The consumer ethic which is now emerging as having some impact on policy for rehabilitation service provision is the first of the ethics to be defined by the disabled person himself. The disabled person is the poor deserving cripple under the volunteer charitable ethic as defined by the giver of charity. The disabled person is the "patient" under the medical ethic as defined by the medical practitioner; similarly he is the client under the professional ethic as defined by the professionals. Only under the consumer ethic does the disabled person take an active role in defining the ethic which influences policy.
The consumer movement and its organizations are the collective expression of individual disabled consumer ethic awareness. Structurally, this movement well suits the independence motiff it carries. The medium fits the message as Marshall McClunan would have it. In the sense that disabled people are joining other minorities in pressing for rights and an improved environment,"the structures follow the community model and so also suit the integration motiff; however, this is not entirely so. There is a necessary contradiction between the call for integration and the method of achieving this by grouping together in organizations made up and controlled by disabled people and this is a problem.
The recent ascendancy of the disabled consumer ethic is due to a number of causes. A general disillusionment with health care systems and professionals together with rising costs associated with these are part of the cause. The 1960's legacies of social activism and a growing consciousness with regard to discrimination in various forms and civil rights must also be credited as part of the etiology of the quickly emerging consumer ethic and its influence on governmental policies and programs.
The recipient who defines himself as consumer is no longer the passive recipient but rather an active consumer participating in the decisionmaking about the production-provision/consumer relationship. The consumer claims as a right this active participation in decision-making.
As the charity ethic has greater impact by far upon the policies and programs of the privately-funded service provider, the consumer ethic has least impact on these. The very idea of the equal place of the consumer with the provider in the provider/consumer relationship is completely contradictory to the underlying assumptions of giver and recipient role expectations of the charity ethic.
The consumer ethic is nominally recognized in the perverted form of token representation by disabled persons on boards of directors ostensibly governing privately-funded and cross-funded service providers. These individuals are usually chosen to support the charity ethic role model of the disabled recipient as childlike, passive, apolitical, asexual, in need and suffering a poverty of opportunity and resources. Their presence serves a twofold purpose:
Firstly, to enforce subconsciously in the mind of the giver the abnormality of the disabled person, the difference or gap between the able-bodied giver and the disabled recipient and the need to isolate disabled people to satisfy avoidance and fear reactions evoked;
Secondly, to act as camouflage against those who would criticize the rehabilitation service provider and associated charitable givers.
The consumer ethic plays a more important role in determining the policies and programs of governmental-funded rehabilitation service provision. It also plays a most important role in influencing government to open up access to a variety of community services and opportunities such as housing, employment, recreation, etc. outside of the rehabilitation context. The phenomenon of consumer ethic influence in both these areas deserves general discussion before we refocus on rehabilitation service provisions. This phenomenon is, in Canada, only about one year old. It is, however, a central and significant trend which is gaining momentum.
The consumer is aware of his role as consumer-citizen impacted upon governmental legislation and policy development in which he claims the right of access. As there are a growing number and potentially, by self-definition, a massively greater number of consumers of rehabilitation services and mainstream community access than providers, the politician is most receptive to input from the consumer ethic through organized consumer groups. It follows that the bureaucrats are also receptive to such input.
The independent living objectives of the,disabled consumer movement are also most attractive to the current mood of government as they are related to economic savings to society at large. Independence is obviously so, integration can be shown to be so by cost benefit comparisons of separate programming and the more cost effective (over the long term) modifications to existing community services, programs, facilities and so on to make them accessible and available to disabled persons.
The consumer ethic's emerging impact for access to services ordinarily available to the public is taking several forms in relation to government. On the one hand the movement's active lobbying role with reference to particular community service areas, such as transportation and access to public employment is resulting in representation from consumer organizations on advisory boards to governmental departments responsible for these areas. Hand in hand with this emerging advisory influence is the movement's central lobbying thrust for comprehensive human rights legislation. This human rights thrust when successful will have significant implications for equal access to all community services provided through or controlled by government. In the meantime, government is actively soliciting consumer input through research contracts with disabled consumer movement organizations and through governmental funding of open policy formulating conferences in the consumer movement to address particular subject areas such as transportation and employment.
Refocusing on rehabilitation (as defined in this paper) service provision directly funded by. government such as rehabilitation centres/hospitals and nursing homes, we find consumer ethic influence just beginning. While the consumer movement has been active from the early 1970's in seeking access to community services, it was not until the fall of 1979 that rehabilitation was addressed in national policy development forms. This important topic was avoided by the movement until this late date for the strategic purpose of establishing in the mind of disabled people and society the place of disabled people outside of the rehabilitation context and establishing the role of disabled people as consumer citizens calling for access to community services.
The consumer movement's perceived need to draw parameters around the concept of rehabilitation and identify themselves as full participants in society outside of the rehabilitation context continue to place some limitations on the movement's involvement in this subject area. The disabled consumer movement however is supportive of a distinctly separate patient's rights movement. Many individuals within the disabled consumer movement are active in patient's rights organizations and these will become an important vehicle for influencing rehabilitation policies.
The Open National Conference on the Parameters of Rehabilitation initiated and co-ordinated by the Coalition of Provincial Organizations of the Handicapped (COPOH) and held in early May of 1980 in Vancouver delineated some disabled consumer movement policy directions in the area of rehabilitation which will be described later in the paper.
Consumer ethic impact on cross-funded rehabilitation service provider policies have taken a variety of forms. Perhaps the most fundamental impact has been the movement's efforts to open up access to regular community services. This positive thrust has threatened and damaged the image of these service providers as taking care of all of the needs of disabled people. The growing influence of the consumer movement on government and the public mind has necessarily weakened the influence and authority of these service providers. Cross-funded service providers have exhibited three reactions to this. The initial reaction, which was most unsuccessful, has been to use such covert influence as these providers have on governmental and private funding sources to deny resources to emerging consumer groups. This was often accompanied by offers of assistance and resources to disabled consumer activists and/or their organizations in and under the structure of cross-funded service providers. When these offers were refused, there were often charges that disabled consumer leaders were maladjusted, unaccepting of their disability or even mentally and psychologically unbalanced or ill because of their disability. Consumer movement activists were accused of being radical or militant. Because this initial resistance reaction has for the most part failed these service providers have begun to develop a new strategy which is perhaps more potentially dangerous to the disabled consumer movement. This more recent development is the acretion of community development service programs as one or more among the many programs offered by these providers. These community development programs develop organizations of disabled people which take the name of the consumer movement without incorporating the movement's fundamental values, philosophies and perceptions. They are often developed by the provider's community development worker in the context of therapy or rehabilitation. These artificial citizens groups supported/controlled by the provider's staff do not incorporate the inherent operational necessity for real leadership development found in true disabled consumer organizations. They sometimes take the form of associations which also serve the provider in private fund-raising efforts. This further degredation and exploitation of disabled people, mocking as it does their efforts to achieve some self-determination and independent living objectives in society, is perhaps most dangerous because potentially it may result in confusion in the public mind as to the true identity and desires of the disabled population. The third reaction of the cross-funded rehabilitation service provider to the growing consumer ethic is most rare, being the acceptance of the proper place of the individual consumer as participating in the decision-making processes of the provider and of the consumer organization as monitoring from an independent organizational position the effectiveness of service provision.
The most hopeful development toward the objectives of the emerging consumer movement is the capacity and willingness of disabled individuals, having gained political.awareness and skills within the movement, to offer themselves as community-minded and responsible volunteers for nomination to the boards of directors of cross-funded service providers. As they are participating as individuals on these boards, the autonomy of the consumer organizations from which these individuals originate is not infringed. It is also politically most difficult for any service provider personnel, who unfortunately may feel threatened by active disabled participation at the board level, to actively campaign against the election of disabled individuals offering themselves for these positions. Because o£ :their often highly democratic forms, the constitutions of these service providers can provide good access to any disabled consumers who wish to be involved in the decision-making processes of the service provider at the board level. The present large size of these boards of directors means that small groups of disabled individuals offering themselves for nomination will remain a minority componant of the board when elected. This, however, should not be an impediment to their influence as the remainder of the board members are usually community volunteers with good will toward the disabled population and little vested interest in the agency status quo. They will prove generally amenable to policy input from the disabled members. The biggest task faced by such disabled individuals on cross-funded service provider boards of directors will be to reorientate and strengthen the Boards to the point of taking on the legitimate and necessary moral and legal responsibility for policy direction of the cross-funded service provider which is the Board's. This will not be a simple task as these Boards have accepted for the most part their restricted role as fundraising and community/political credibility and influence mechanisms for the cross-funded service provider.
III. STRENGTHS, POTENTIAL BENEFITS AND APPROPRIATE ROLES OF THE ETHICS
I have until now emphasized the problems and difficulties posed by volunteer charity, medical and professional ethics; I have also indicated at least one problem in the consumer ethic for rehabilitation and the achievement of independent living goals. I would now like to identify and emphasize the positive characteristics of these ethics, or, if I may use the term loosely, "rehabilitate" them.
The volunteer charity ethic originates essentially and ideally. from goodwill and generosity of self. As such it is clearly a virtue and is so recognized, biblically. In its true form as a virtue it is potentially present throughout humanity and has great potential strength and benefit for society.
Its appropriate role in reference to our topic is chiefly in individual interactions between able-bodied individual's acceptance and understanding of the unique needs and resources of their disabled fellows. In disabled individuals it must be present in acceptance and understanding of the limitations, experiencially and therefore in knowledge, and so in capacity of their able-bodied fellows. The expression of the true spontaneous volunteer charity ethic by individuals would obviate many of the problems faced by society in regard to disablement today and would eliminate the need for many forms of institutionalized service and help.
The biblical parable of the widow's mite illustrates a most essential characteristic of true charity, which is that charity does not seek gain for the self such as personal feelings of magnanimity, self-sacrifice and so on, nor public recognition as magnanimous, self-sacrificing etc., but rather gives anonymously for the sole purpose of giving.
Although the collective expressions of the volunteer charity ethic have been seen to be generally most perverted from this ideal, it is possible that the goodwill and giving of self implied by true charity for humanity can be expressed in a positive manner collectively. This has been demonstrated by some consumer movement organizations in equal partnership with business and private sector service organizations engaging in project activities which are of general benefit to society. Such partnership activities on behalf of general societal benefit serve primarily to enhance the image of disabled people as participating and contributing valuable members of society while at the same time generating resources to solve common societal problems presented by the contemporary position of disabled people in society.
The medical ethic too has its original essential valuable motive - that of healing the sick. Most people are ill at one point or another of their life and have need of medical help. Disabled people perhaps have a particular need for medical help inasmuch as disablements generally originate with disease or accident. Some forms of disablement also involve recurring boughts of illness or predictable requirements for medical help at various points during life. In this context the medical ethic and its function of healing is very necessary and valuable to disabled people.
In its legitimate role of healing, the medical ethic must become cogent of the full implications of the "sick role" it assigns to patients. This role's characteristic of relieving the sick person of certain responsibilities is also essentially a valuable one. It is obvious that the healing process will be enhanced by relief from the stress of certain obligations and responsibilities for the patient. At the same time, this relief for the patient from responsibilities must not be carried so far and for so long a time that the patient becomes unable to deal with and take up again his responsibilities after the restoration of health. The medical profession is beginning to realize this necessity.
The chief solution to the problems presented by the medical ethic for the achievement of independence and integration by disabled people is a realization that the attribution of the sick role to the disabled person is inappropriate. In addition the realization by medical practitioners that treatment of an individual must take into account the whole human personality and nature of the individual in the design and application of treatment is important. Again indications of this realization are presently being seen within the medical profession.
The professional ethic at its heart has the essentially necessary and valuable understanding of the importance of knowledge, training and experience. Its central and valuable objective is the recognition and respect for this knowledge, training and experience by the public and expecially those who would benefit from these to the end that they can most effectively be applied where and when necessary without interference. The values of this understanding and objective are indisputable.
It is fortunate that many helping professions are now beginning to realize that they can best help and apply their knowledge when the individuals being helped share in an understanding of the methodologies being applied, are enabled to participate in decision-making throughout the helping process and participate in this process in an essentially equal manner.
The professional ethic must also understand the limitations of the knowledge it protects. By this I mean specifically that professional practitioners must recognize their need for accountability to the community which provides them with the resources and wherewithal to practice and on whose behalf they are enabled to practice and which they serve, meaning here disabled people as well as the community at large which disabled people are part of.
A problem identified in the consumer ethic for the achievement of independent living goals by disabled people was the contradiction between the objective of integration and the methodology of banding together in consumer organizations made up of and controlled by disabled people. It is important, in my view, that disabled consumers recognize society at large and the able-bodied people in it have interests in common with disabled consumers; that in a sense all of society consumes or is impacted upon by the way services are provided for disabled people.
This means that the membership requirements of disabled consumer organizations will in many cases need to be modified so as to allow participation by able-bodied people, albeit always under condition that these able-bodied participants in the disabled consumer organization understand the essentially important value of disabled leadership and the prior significance of the disabled person's perspective and opinions, based as it is on direct experience of problems to be solved.
It is well, that because of an increasing number of able-bodied people who understand the philosophies, values and perspectives of disabled consumers and the growing confidence and abilities of disabled individuals gained through and in disabled consumer organizations, membership criteria are gradually being changed to allow full participation by able-bodied persons who share a basic understanding of the disabled consumer perspective.
IV. SOME PROGNOSTICATION OF FUTURE-POLICY DIRECTIONS
The most general policy implication of the disabled consumer movement for rehabilitation service provision is the curtailment of the rehabilitation concept to the treatment mode and the resulting shift of certain functions away from rehabilitation services to general community services and independent living services.
Independent living services are those which are uniquely required by the physically disabled individual in order to maintain an independent lifestyle in the community. They are distinct from what I term general community services inasmuch as they are not required by able-bodied people. They are also distinct from what I term rehabilitation services inasmuch as they are not a part of treatment to remedy the effect of disablement, but rather are services necessary to the maintenance of independence and integration for the disabled individual after the completion of rehabilitation treatment services.
More physically disabled Canadians will be represented in the entire spectrum of commissions and boards which manage and direct general community services, i.e., school boards, hospital commissions, arts councils, transportation commissions, housing authorities, parks boards, public service commissions and so on. Just as today there is a societal expectation that women will be represented on these, tomorrow there will be such a general societal expectation that disabled people too will be represented. This will naturally result in general understanding of the need for, and means of, equal opportunity for access to all the variety of general community services for disabled people.
The disabled consumer movement will continue to lobby for legislative change at all levels. The Canadian Human Rights Act will be amended to provide comprehensive protection for disabled Canadians as is already provided to other minorities in Canada. Human Rights legislation in all ten provinces will be improved with respect to protecting disabled people from discrimination in all areas of provincial jurisdiction. The basic rights of disabled Canadians will probably be entrenched in any new Canadian constitution.
Confrontation tactics and absolutist ideologies will be avoided by the Canadian Disabled Consumer Movement. Architectural and communications system design modifications will be promoted as being more usable by all people rather than as being necessary for accessibility for disabled people alone.
In transportation, airline travel will continue to become more useable for disabled people. Inter-city and commuter rail transport will become accessible. Mass urban transit systems such as light rail transit which are built in the future will be accessible to disabled people. Inter-city and urban buses will be equipped with wheelchair lifts and required to be wheelchair accessible. Door to door demand/response parallel services for disabled city dwellers will be increased to a level of service parity with public transit services offered to ablebodied citizens. Public transportation systems will incorporate communications devices to make travel more convenient and safer for visually handicapped and hearing-impaired people. As these forms of public transportation become more accessible and usable by disabled Canadians, the special charity/volunteer-based rehabilitation transportation services will be phased out.
Public housing of all kinds will become accessible for disabled Canadians. Design features taking into account the needs of mobility, visually and hearing handicapped Canadians will be incorporated into this kind of housing by statute. Special forms of public housing will be available for transitional skills development purposes and for long term residency by people with very severe disabilities. Consideration for special design modifications in private housing development will follow closely. As integrated community housing becomes a reality for disabled Canadians the need for nursing homes and special charity/volunteer-based rehabilitation housing will diminish.
Disabled people will receive their public education together with non-disabled people. Special educational programs, classrooms and schools for mobility handicapped children will be soon phased out. As the general benefit of a deaf sign language is discovered for all children and, as technological advances by-pass communications barriers for deaf and blind children, special schools for people with these kinds of disabilities will also be phased out.
Preferential hiring for disabled Canadians, on the same social need basis as "veteran's preference", will be implemented by public service commissions at provincial and federal levels for limited time periods. These will be phased out as staff profiles begin to reflect equal employment opportunity for disabled Canadians. Private sector employers generating employment through contracts with governments may be required to practice preferential hiring for limited time periods. Incentives for hiring disabled people by way of wage subsidies will be made available to private sector employers almost immediately. These will also be phased out as destructive side-effects of employer abuse and disabled worker stigmatisation become obvious. As general community employment becomes more available to disabled Canadians, sheltered workshop services will be terminated for people with physical disabilities. At the same time, employment preparation centres will be seen as based on the erroneous assumption that people require special work attitude and skill training simply because of their physical disability. This assumption will be analysed as an institutionalized example of the social-psychological phenomenon of "spread" wherein evidence of one disability is interpreted as proof of many, as for example when blind people are shouted at as if deaf and generally treated as if mentally retarded.
In the area of recreation, camping and park facilities will quickly become accessible. Community recreation centres will become more accessible; community swimming and other recreation programs will welcome participation from disabled Canadians. Special social group and recreation programs, presently provided by rehabilitation service providers, will be phased out.
Government will recognize its error in providing all services to meet the needs of disabled people on a health basis through health-related structures. The simple understanding that disabled people are not necessarily sick, and that many of their present problems result from the social assumption that they are, will result in much selfexamination by government.
It will be discovered that the unique needs of disabled people beyond the rehabilitation treatment process are more related to equality of opportunity, citizens rights and the social problems of other minorities than to medicine and health. This discovery will result in direct programming from governmen.- to meet these unique non-rehabilitation needs of the disabled minority.
In the federal area these services may well be provided under the department of the secretary of state as this is the department most concerned with equal opportunities, citizenship development and the special problems of minorities.
Once freed of the health context, the federal government will have direct responsibility for meeting these needs in the equality of opportunity citizenship development context. This will have some advantage from the federal perspective inasmuch as the same needs now being met largely through federal dollars are provided through programs controlled and administered by provincial governments because health is a distinctly provincial matter under the present constitution, the B.N.A. Act.
I will term the service providing unit for these direct services from government, to meet the unique needs of disabled beyond the rehabilitation process, independent living centres. These centres will offer a broad range of technical aides and appliances which are disability but not health related. In conjunction with this they will also offer engineering and technical services to modify household appliances, cars and so on, for use by uniquely disabled individuals. In addition these centres will offer attendant care resources. This resource to meet the personal care needs of disabled people is distinct and different from home care services which are designed for people who are ill. Attendant care personnel are supervised by the disabled user of the service who also has some part in the selection of the personnel serving his needs. Peer counselling services will also be offered probably through contracting this resource from local disabled consumer organizations. Such peer counselling will be related to independent living needs in the community.
Because of the equal opportunity citizenship rights and development context in which this new category of service will be provided, it is also likely that some basic legal counselling resource will be incorporated in its design. Hopefully this will not in any way replace or duplicate community legal services.
These independent living centres will be managed by community boards made up of at least 50% disabled consumers. Initial funding for independent living centres of Canada will be on the basis of $1 per capita. This prediction, on financing perhaps betrays the optimistic stance in this latter stage of the paper.
More disabled individuals will volunteer to serve on the boards of directors of rehabilitation service agencies as well as hospital commissions and so on. Involvement of these disabled individuals in such positions of authority will provide more positive role models for staff providing rehabilitation services. Provider staff, for too long, have been exposed only to disabled individuals who, for a variety of reasons, reinforce staff expectations of disabled people as dependent and requiring assistance.
Generally, more effort will be made and care taken to ensure that rehabilitation personnel attitudes are in line with true rehabilitation requirements.
Charity/volunteer ethic involvement in the provision of rehabilitation services will diminish. Generally, rehabilitation services will be redesigned and modified to provide the disabled individual being served with greater self-expression, self-determination and general involvement in the rehabilitation service process.
To some extent, this will be accomplished by a federal requirement for rehabilitation contracts, which will be negotiated between the rehabilitation service provider and the disabled-individual concerned and will incorporate definite time lines with measureable objectives. This is called for in COPOH resolution 5.80/4 which reads:
WHEREAS the disabled consumer is seldom involved in the development of his rehabilitation plan; and
WHEREAS the disabled consumer should be entitled to be; and, it is more effective and beneficial if he is; directly involved in the development of his rehabilitation plan;
THEREFORE BE IT RESOLVED that COPOH advocate federal legislation providing that any service agency supplying rehabilitation services (which require federal funds either directly or on a provincially cost-shared basis) be required to develop an individually written rehabilitation plan, in consultation with the consumer, and in the event of a dispute there be an appear to an independent third party. Each plan shall incorporate definite time limits with clearly defined objectives, specific review methods, and an appeal mechanism.
The patient's rights movement will continue to grow and require accountability from the rehabilitation service provider and health care system generally. This movement will continue to call for greater recognition of the rights of patients, including their right to self-determination and input to decision-making processes during rehabilitation.
Among new services which will be provided are counselling in the area of sexual function for newly disabled individuals and adolescent individuals who were disabled early in childhood. Peer counselling for disabled people will also be provided - probably through contracting this resource from local disabled consumer organizations. Such peer counselling has been demonstrated as invaluable to the rehabilitation process, particularly in disability areas such as spinal cord injury and progressive disablement such as multiple sclerosis.
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