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The Oration: Ageing And Disability: Toward A Unifying Agenda

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


People who age and people with disabilities have traditionally been split into two opposing camps in the eyes of both providers of services as well as their own self perceptions. By focusing on several cross cutting phenomena -- issues of prevalence, the ever changing nature of chronic conditions, the effects of which I call the technicalisation and medicalisation of services, and the full implications of the home care revolution -- I argue for the importance of their finding a common ground.

Numbers: Just how much disability is there?

Whether the unit of study be a city, a state, or a country, it is generally estimated that one out of eight people has a disability (National Centre of Health Services 1982; Office of Technology Assessment 1982). Those numbers themselves would be of concern (e.g. three million people in the United States), but cast as a ratio, the numbers still convey the notion of a statistical minority. Thus a major question is whether or not such figures are likely to increase.


Now recent declines in various mortality statistics such as the total death rate, infant and maternal mortality, condition-specific death rates, increases in life expectancy, at birth and at various later ages cause many to claim that world health is improving. Time series studies of illness and disability, however, provide a very different and less optimistic picture.


A review (Wilson and Drury 1984) of the twenty-year trends in fifteen major broad categories of chronic illness (1960-81) found that the prevalence of seven conditions (heart disease, diabetes, hypertension, bronchitis-sinusitis, arthritis-rheumatism, visual and hearing impairments) had more than doubled. Two conditions had increased their prevalence by 50% to 99% (asthma-hay fever, impairments of back or spine); five had increased by up to 50% (peptic ulcer, hernia, paralysis, varicose veins, and haemorrhoids); and only one condition (impairments of lower extremities) had become less prevalent. The so-called greying of the population did not explain the increases, since a similar pattern was observed across all age groups. For persons 45-64 (the core of the working population) these figures translated directly into limitations on activity, more than doubling the number of males who claimed they were unable to work because of some illness or disability (from 4.4% to 10.9%).


Looking at two subsets, the young and the old, heightens the issue of increases in disability. Thus, where children are concerned, the absolute numbers in the under-17 age group are not expected to increase. The National Health Interview Survey (Newacheck, Budetti & Halfon 1986) indicates that the prevalence of activity-limiting chronic conditions among children doubled between 1960 and 1981 (from 1.8% to 3.8%), with the greatest increase in the past decade. This is added to by what is often referred to as 'the new morbidity,' an interest in psychosocial issues such as behavioural adjustments and learning difficulties. It is also clear that changing educational concerns are making learning problems the fastest growing disability on university campuses. What new learning disabilities we will discover as computer literacy becomes a sine qua non for success in contemporary society is anybody's guess.


Now turning to the older population; in absolute number they are on the increase around the world. All census data affirm that the fastest growing segment of the US population is made up of those over the age of 65. In 1880 their number was less than two million (3% of the total population), but by 1980 it was twenty-five million (11.3%). By the year 2030 an estimated one in four or five citizens (20% to 25%) is likely to be over 65. Put another way, throughout most of history only one in ten people lived past 65; now nearly 80% do (Liu, Manton, Alliston 1983).


While such data are clear for the industrialised world, a longer term projection claims a similar trend throughout the developing world as well. Thus the United Nations Department of Economic and Social Affairs (1982), using what they dubbed 'medium' assumptions of fertility and mortality, projected a near doubling of the world population of people over the age of 65.


For the United States population, virtually all figures on disability increase with age. Thus one in four of those aged 65 or older has a limiting disability and one in seven, a 'severely limiting one'. Translated into service implications only 3% of all persons 65-69 need any personal assistance because of these problems, but by age 85 this rises to one-third (Feinstein, Gornick, and Greenberg 1984).


Thus whether measured by the growing prevalence of certain chronic conditions, the increased limitations in activity, the inevitable ageing of the population, the changing awareness of parents and professionals, and the ever changing demands and structure of society, the number of people with conditions interfering with their full social participation is so steadily increasing that the word 'minority' can hardly apply. Ray Lifchez puts this into perspective when he concludes:


"... Those among us who are able-bodied can no longer rationalise treating physically disabled people as 'them', an alien minority. This is not simply a matter of humanitarian bonhomie, for 'they' now include our parents, siblings, and children, our friends, neighbours, and colleagues, and -- one day -- ourselves." (1987, pp. 36-7)

Nature: Is disability the same as it always was?

For years infant mortality has steadily decreased, in large part because of improvements in standards of living and prenatal care. There are thus increasing numbers of low-birth-weight and other infants surviving into childhood and beyond with manifest chronic impairments. With advances in medical therapeutics, many children who would have died are now surviving into adulthood or longer, such that each of us know someone who is the longest lived person with spina bifida or exotic fibrosis.


There is a similar trend evident in the young adult group. While trauma still continues to be a major cause of mortality in this group, there is a major turnaround in the survival rates of people with spinal cord injuries. As recently as the 1950s, death was likely in the very early stages or soon after because of respiratory and other complications. Thus in World War I only 400 men with wounds that paralyzed them from the waist down survived at all, and 90% of them died before they reached home. In World War II, 2000 paraplegics lived and 1700 (over 85% of them) were still alive in the later 1960s (President's Committee on the Employment of the Handicapped 1967). Each decade since has seen a rapid decline in the death rate and thus of long-term survival: of first those with paraplegia; then with quadriplegia; and now, in the 1980s, those with head injuries.


At the moment, the situation with the older population may seem less predictable. At very least, we can speculate that an ageing population will be even more 'at risk' for what were once thought 'natural' occurrences (e.g. decreases in mobility, visual acuity, hearing) and with other musculoskeletal, cardiovascular and cerebrovascular changes whose implications are only beginning to be appreciated.


Still another unappreciated aspect of most chronic conditions is that although permanent they are not necessarily static. While we do, of course, recognise that some diseases are progressive, we are less inclined to see that there is no one-time, overall adaptation or adjustment of the condition; no set treatment, and most important; no design requirement for an individual's working and living situations. Even for a recognised progressive and episodic disorder such as multiple sclerosis, only recently has attention been given to the continuing nature of adaptations (Brooks & Matson 1982). The same is also true for those with end stage renal disease (Gerhardt & Brieskorn-Zinke 1986). With the survival into adulthood of people with diseases that once were usually fatal, come changes and complications. Problems of circulation and vision for people with diabetes, for example, may be due to the disease itself, to the ageing process, or even to the life sustaining treatment (Turk & Speers 1983).


Perhaps the most telling example of a new manifestation of an old disease is the current concern over the so-called 'post-polio syndrome'. To most of the public, to clinicians, and certainly to its bearers, polio has been considered a stable chronic illness. Following its acute onset and a period of rehabilitations, most people had reached a plateau and expected to stay there. For the majority this may still be true, but for at least a quarter of us, it is not. According to the latest reports, some twenty to forty years after the original onset, large numbers of people are experiencing new problems (Halstead & Wiechers 1985; Laurie & Raymond 1984). The most common are fatigue, weakness in muscles previously affected and unaffected, muscle and joint pain, breathing difficulties, and intolerance to cold. Whether these new problems are the mere concomitants of ageing, the re-emergence of a still lingering virus, a long-term effect of the early damage or even of the early rehabilitation programs, or something else, is still at issue. Whatever the 'real' etiology of this phenomenon, there will likely be many more new manifestations of old conditions and disabilities as people survive decades beyond the acute onset of their original diseases or disabilities. Thus, the dichotomy between these people with a progressive condition and those with a 'static' one may well be generally speaking, less distinct than once thought and indeed be more of a continuum.


In other instances, it is not so much the underlying condition that changes but the situation in which it occurs. Thus in studying an older population May Clarke (1969) noted that between 55% and 90% (respondent report versus chiropodist examination) of her sample of 1100 adults had something the matter with their feet. The conditions ranged from corns to skin infections, from ingrown toenails to hammer toes. Only 17% of these problems were often painful and inconvenient, and for the older population, 'functionally crippling', preventing them from travelling or walking any considerable distance and eventually resulting in even greater isolation.


Implicit in all that I have said so far is the notion that disabling conditions are not merely the result of some physical or mental impairment, but rather of the fit of such impairments with the social, attitudinal, architectural, and even political environment. In recent years The Independent Living Movement has grown around this thesis, and its adherents have begun to delineate its implications for social policy (Hahn 1985; Stone 1984). Simply put, some physical differences become important only in certain social environments (reading and writing difficulties in a literate environment, mobility impairments in a sports-oriented society) or at certain times of life (sexual and reproductive issues are less important for the very young and very old, and some for only one gender). The life-cycle theorists are quite aware of this and postulate different issues we must contend with and the resulting disablement if we do not. Yet, many of these theories and the resulting social policies are locked into a grid where the 'final' stage of life begins around age 65. This might have been at least logical when the general lifespan was must shorter; then, each stage took about ten years. But what does it imply when the 'last' stage continues far beyond a decade, with some estimating it could reach well over a hundred. Surely neither society in general nor the individuals involved will tolerate one stage of life that covers half of the lifespan. My sense is that later life is an uncharted map that will inevitably bring new challenges requiring different capacities and evaluations, but also involving new diseases and disabilities.


Thus, while today's chronic conditions may be around for longer periods of time, their quality, scope and dimensions will not be permanent.

The Technological Fix: How much can it help in regard to disability?

There is a premise in the western world (raised, some would argue, to the level of an absolute in the United States and exported to the rest) that with great effort and the right technique, there is no mountain that cannot be levelled, no body of water that cannot be shifted, no force of nature unharnessed. Where medicine was concerned, this philosophy took wing in the age of magic bullets which cured and prevented a large number of infectious disease. The diseases of the late twentieth century do not seem to yield to such once and for all solutions. Medical miracles continue to occur but take more the form of life-extending technologies (Dychtwald 1985). In recent decades these have included organ transplants, bionic and genetic engineering, and enhanced pharmacopeia. One does not have to have been a fan of television's The Six Million Dollar Man' or 'The Bionic Woman' to realise that we are entering an era where almost every human body part and function becomes replaceable, or, at least, assistable by some technical device (Cavalier 1987; McMurray 1987).


The 'societal' commitment to such technologies has some inevitable costs. The publicity generated by artificial heart transplants and electrical stimulation for spinal cord injuries cannot help but divert economic and psychological resources. The glamour of such high tech solutions detracts from the importance of necessary improvements in such low technology aids as wheelchairs and crutches (Dixon and Enders1984; office of technology Assessment 1983), and even hampers the development of ones necessary to daily existence (Enders 1984, 1986). Too often forgotten also is the very long lead-time between the development of these devices or procedures and their eventual wider and cheaper dissemination. Thus, it is unlikely that any of the techniques currently in their earliest phase of development will ever be of use in the lives of the majority of those who currently have major heart conditions or spinal cord injuries. In short, such people need to adapt to their limitations, to enhance their functional capacities, and make changes in their social and physical environment (Bernstein 1986).


Faith in the technological fix encourages belief in the fallacy that all problems have a technical solution, and creates a bias in favour of short-term gains over long-term consequences. It also creates a preference for solving problems that can be measured and described in objective terms over those with more social and phychological -sic- dimensions.


In the most concrete terms this perspective can affect 'independence', the traditional hallmark of success in rehabilitation. This has often been measured by functional performance -- self care, toileting, dressing -- often called 'activities in daily living,' and its philosophy embedded in the instruction to 'use it or lose it' and to push oneself to the limits of one's physical capacity. But living by this measure of independence means engaging in activities only when they can be done under one's own steam. This may be a definition of 'mainstreaming', but it is not necessarily one of 'independence'. Many people with hand-propelled wheelchairs may limit their social activities to those that can be conducted with a range of a few hundred yards, while with an electronic chair their mobility and thus their social life can be measured in miles. The same rationale applies to doing certain tasks by oneself, or with help, or not at all. The Independent Living Movement crystalises very well in this issue (Crewe and Zola 1983; DeJong 1983). Its very philosophy proclaims a new notion of independence, measured not by the mundane physical tasks one can do but by the personal and economic decisions one can make; not by the quantity of tasks one can perform without assistance but the quality of life one can live with help.


The conquering aspect of technology has a counterpart in the passivity of the recipients of care. Early models of medical care went so far as to claim that passivity was a necessary condition of good care (Szasz & Hollender 1958). Eventually this became a self-fulfilling prophecy, with patients as well as professionals believing that experts had to take complete responsibility for solving problems because helpless patients lacked the capacity and the will to handle and solve their own problems. Medical care based on this approach raises exaggerated expectations (a seed-bed for malpractice suits) and undermines the capacity of individuals to draw on their own resources when they most need them; when faced with frustrating, long-term, often intractable problems. It is thus no great surprise that people who learn to normalise and routinise their situations do far better, for example, in dealing with many of the problems of hemodialysis in end-stage renal disease (Gerhardt & Brieskorn-Zinke 1986).


There are other even more subtle ways in which the use of technology has gone and is going too far; putting an individual's very integrity at stake. There is very little understanding of what happens when bodily parts and functions are replaced by equipment; it is not an unmixed blessing. It has been found in recipients of transplants and skin grafts that the physiological body rejects parts it feels are alien. So, too, the psychosocial person rejects parts he or she feels are alien and often experiences profound feelings of distrust, anger, depression, and even suicide. Thus, it is not at all clear what it means for someone to put on braces or strap on prosthetic limbs as part of his or her daily routine. The adjustment may become more serious, if not psychosis-producing, as people become internally attached to and thus dependent on machines, such as pacemakers or kidney dialysis machines.


Still another problem may exist in the over-technicalisation of 'care', such as in the invention of robots or the training of chimpanzees to service, dress, and feed people with quadriplegia. As Cavalier (1987) points out, professionals automatically assume that it is good to reduce a person's 'dependency' on others. Recently, I saw where such an assumption indeed affected the very integrity of the individuals 'being helped'.


In long-term care institutions one of the least cost-efficient activities is the feeding (and to a lesser extent, the grooming) of the residents. There was initial rejoicing when a set of machines reduced this 'unpleasant' and time-consuming' activity to manageable proportions. Within a month, however, there was a wholesale rebellion which took much effort for the residents to literally and figuratively articulate; namely, that this cost-effective method eliminated almost entirely the major time during which residents were directly attended to, one of the few times they experienced genuine touching and physical intimacy and thus one of the few times they felt recognised and recognisable as human beings.


Cost-effectiveness is, of course, not the only push to replace human interaction with machines. Part of the appeal of machines and animals is the intimacy people may perceive is easier to share with them. But there may be a long-term loss from this short-term gain. I did not accidentally use the term 'care' when introducing this thought. According to Webster's dictionary, care involves painstaking or watchful attention, regard coming from desire or esteem, a person that is an object of attention, anxiety or solicitude.


The point is simple; that giving medical care or personal care, is not merely a technical task. On the contrary, it is quite personal. Thus to objectify this care by replacing a human being with a machine or an animal can only lead to the further objectification of the individual receiving care.


Finally, the continuing technical focus (despite lip service to the contrary) of medical education has had implications for the social and emotional distance necessary for physicians and therapists to treat their patients. An emphasis on diseases, pathology, specific organs, and specific techniques helps create a 'separation' that once was quite functional. When there was no anaesthesia and death was a common outcome of serious illness and hospitalisations, the conditions and the treatments that occupied physicians' time were of relatively short duration. Because care took less time, this impersonality might also have been of less concern to patients. Though the circumstances that produced this distancing have long since passed, the educative process that brought it about still remains in a time when it is no longer functional. Distance gets in the way of dealing with long-term pain, with chronic loss, and with a dying process that may go on for years.


While there is little doubt that technology can enhance the lives of all of us -- both those with a disability and those temporarily without one -- we must be particularly careful lest the element that is being replaced is part of the essence of what is a human being and a human relationship.

Personal Support Services: Who will deliver them and how?

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


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


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


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


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


As feminists have long pointed out, this further feminisation of support services may turn out to be an adjunct to the feminisation of poverty. That women retain the overwhelming responsibility for such services will be good neither for them nor for the society.


Because of such burnout issues (or to prevent their occurrence) many have argued for the more systematic introduction of outside support services for those who choose to live with their families, as well as for those who do not (Litvak, Zukas and Heumann 1987). Some people will need such help only at special times; early morning wake-up and late evening 'bedding down' may require lifting, washing, dressing and some special procedures, but after that individuals may be on their own. As DeJong notes (1977a, 1977b), with such general provision of services plus that for special occasions, people with a wide range of generally perceived 'serious' disabilities and neuromuscular conditions can live quite independent and full lives.


How independent and full a life such people can live may well depend on the way such services are delivered. Gerben DeJong and Teg Wenker (1983) address this issue when they contrast two very different models of in-home assistance: the agency-directed model of home health servics -sic- and the self-directed model of attendant services.


In their most traditional form, agency-directed home health services are intended to meet a person's episodic acute-care needs during post-hospital convalescence. The model has, however, been extended to the elderly client with a chronic condition. The service recipient is seen as a patient whose care requires a nurse's supervision in accord with a physician's plan of treatment. Thus, as in the medical model, accountability is assumed to attach to the physician. Payment is made to the home health agency which, in turn, pays its employees: nurses and nurses' aides. Home health services are viewed as an extension of the health care system, and accordingly, as a health care benefit.


In their most common form, self-directed attendant services are intended to meet a person's continuous chronic care needs. The service user is seen as a consumer who is capable of supervising his or her own care. Thus, as the Independent Living model, accountability is assumed to belong to the consumer, not the physician. Payment is made to the consumer who, in turn, pays his or her attendants. Attendant services are viewed as an extension of the social services system and thus as a social service or personal maintenance benefit.


Similar advantages of a self-directed model of service have been found for people with more substantive medical problems. Technology has made the home a friendlier environment for procedures previously thought possible only in the hospital under close medical supervision. Examples include improved sanitary and sterile conditions, electrical power for motors to run a variety of machines and fail-safe measures (back-up generators) when power fails, easy access to public and private transportation and to information and professional advice, and surveillance and telemonitoring systems to monitor patients' conditions and regimens (Dawson & Feinberg 1984). While these advances make more complex technical procedures possible, they can make the home seem more like a private hospital room and thereby defeat the very purpose of the shift.


Again the Independent Living model is an attempt to mitigate this danger. Thus people with end-stage renal disease who home dialysise have been shown not only do better in the long run but, in the face of such an unpredictable disease and technology, also feel more in control and better about themselves (Gerhardt and Brieskorn-Zinke 1986; Kutner and Brogan 1985; Simmons, Anderson, and Kamstra 1984).


For many reasons, an increasing shift to out-of-hospital care is a good, necessary, and even inevitable phenomenon. It must, however, be acknowledged that for some the shift will come too late. Some families will already be so depleted of energy and resources that they simply will not be ready to try again. For some the accompanying risk and responsibility will simply be too great, while for others, there will simply be no available family.


The shift of service to the home thus involves far more than a mere physical shift in the location of services. Families as well as individuals will have to be trained and supported in their efforts to cope with new responsibilities and risks. They will even have to learn that relying on others is neither a sign of failure nor an indication of helplessness. There will need to be many institutional and governmental supports, whether they be payments in kind, tax benefits, or even money where families provide services, as well as the creation of national comprehensive systems and policies about such services. Whatever form they take, however, they must be done to enhance the independence and control of the recipient.

In Conclusion

What I have tried to do in this talk is demystify 'the specialness' of disability. By seeing people with a disability as very different with very special needs, wants and rights in this currently perceived world of finite resources, they are pitted against the needs, wants and rights of the rest of the population such as those who are ageing (Stone 1984). Only when we acknowledge the near universality of disability and its non-medical dimensions will it be possible fully to appreciate how public policy affects this issue. Such a turn-around is easier said than done (Milio 1981).


It is not common to think of the problems of health, disease, and disability on a truly social-political-economic level. While it has long been recognised that access to certain health resources will be affected by social, political, and economic factors, it is less accepted that the very health problems themselves may be created (Navarro 1976; Waitzkin 1983) and even perpetuated (Illich 1976; Illich et al. 1976) by those same forces. It is thus no accident that medicine as an institution (Starr 1982) and medicalisation as process (Conrad and Schneider 1980; Zola 1983) hold such sway in the 20th century. For the focus on the individual disease, the individual patient, the individual treatment becomes at the same time a powerful depoliticiser of all the other external forces (Crawford 1977, 1979; Zola 1972).


The power of an institution is often reflected not in the possession of formal power but in the influence they hold in the minds of the population (Zola 1983). Thus after contact with medical institutions, people, both in and out of hospitals, tend to think of themselves and be thought of by others in terms of their diseases and disabilities (Gartner and Joe 1987; Zola 1986). The first step to changing this situation is when the people themselves begin to question such images and such institutions. The Independent Living Movement (Scoth 1984) has been in place for over a decade, but the first evidence for a changing consciousness on the part of a larger population is only now at hand. In the US the Louis Harris Poll (1986) of a national sample of people with disabilities indicated for the first time the beginning of a kinship across disabilities, the identification with the minority status of black and Hispanics, and a recognition of the long-term denial of their civil rights. I have no idea how widespread such a feeling is but the movement has gone cross-cultural with the formation of Disabled People's International in the early 1980s.


There is at long last a growing recognition from providers of service themselves (Katz 1984; Osberg 1983) and designers of the environment (Lifchez and Winslow 1979; Lifchez 1987) of their role in the creation of past problems and their necessary role in future solutions. Lifchez addresses this issue in architecture but he could as well be speaking to all of us.


Renovating society's house, which is one way to perceive the built environment is a profound work. To restructure the environment so that it responds better to the needs of all people -- not only architects but clients and managers and all others who are concerned with the built environment -- re-evaluate their thinking. All must come to believe that an environment that is more responsive to the needs of 'real people' is not only possible but desirable. Designers operate within a political context, and in order to implement real change, they must be prepared to point out to clients in the public and private sectors that the new standards and provisions for accessibility should not be perceived as unusual or burdensome but rather as the latest requirement placed by consensus on the environment. The architect as visionary must remind others that architecture reflects how society feels about itself, that creating an environment is a dynamic process, and that architecture should express a society's highest aspirations and ideals (Lifchez 1987, pp. 49-50).


Thus to re-examine policy means to re-examine our basic values (Borgatla and Montgomery 1987a, b). The way a society treats its disabled members may be a mark of the quality of life in that society for all its citizens. What such a society need look like is provided in a Swedish plan, aptly called A Caring Society (Secretariat for Future Studies 1982). This is one which emphasises our interdependence while recognising each person's uniqueness and promulgates a concept of special needs which is not based on breaking the rules of order for the few but a designing flexible world for many (Orleans and Orleans 1985). Thus to conclude what is done in the name of disability today will have meaning for all of society's tomorrows.


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