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Aging and disability: toward a unified agenda.

People who age and people with disabilities have traditionally been split into opposing camps in the eyes of both providers of service as well as their own self-perceptions.

An exclusively special needs approach to either group is inevitably a short-run approach. What we need are more universal policies that recognize that the entire population is "at risk" for the concomitants of chronic illness and disability. Without such a perspective we will further create and perpetuate a segregated, separate but unequal society- a society inappropriate to a larger and older "changing needs" population. It is, however, in the nature of this historical moment that such a change in perspective must take the form of a corrective - a reorientation of the general thinking about disability (Milio 1981).

Two bases for such a reorientation underlie this paper. The problems of disability are not confined to any small fixed number of the population. And the issues facing someone with a disability are not essentially medical (Hahn 1984, 1985, 1986; Zola 1982). They are not purely the result of some physical or mental impairment but rather of the fit of such impairments with the social, attitudinal, architectural, medical, economic, and political environment. Numbers: How big a problem is disability.?

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 Center for Health Statistics 1982, Office of Technology Assessment 1982). Those numbers themselves would be of concern (e.g., 36-40 million people in the United States); but cast as a ratio, the numbers still convey the notion of a statistical minority. Thus a major concern is whether or not such figures are likely to increase (Colvez and Blinchet 1981). Recent declines in various mortality statistics (e.g., the total death rate, infant and maternity mortality, condition-specific death rates), increases in life expectancy at birth and remaining years of life at various later ages cause many to claim that our nation's health is improving. Time series studies of chronic illness and disability, however, provide a different and less optimistic picture.

When Wilson and Drury (1984) reviewed the twenty-year trends (19601981) in fifteen broad categories of chronic illness in the United States, they found that the prevalence of seven conditions had more than doubled; two had increased their prevalence from 50 to 99%; five had increased by up to 50%; and only one condition had become less prevalent. The so-called "graying" of the population did not explain this since a similar pattern was observed for persons 45-64. For this latter group- the core of the workforce - chronic conditions translated into activity limitation with a more than doubling (from 4.4% to 10.8%) of the number of males who claimed they were unable to work because of illness or disability.

Looking at two subsets- the young and the old - is particularly instructive. While the absolute number of children (under 17) is not expected to increase, the proportion of those with a disability will. The United States National Health Interview Survey (Newacheck, Budetti, and 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 last decade. While much of this may be due to the survival of lower-weight newborns with various impairments, the major increase may well be due to shifting perceptions on the part of parents, educators, and physicians where changing educational concerns are making learning disabilities (e.g., dyslexia, etc.) the fastest growing disability in the country (Faigel 1985). What new learning disabilities will be discovered when computer literacy becomes a sine qua non for success in contemporary society is anybody's guess.

All census data affirm that the fastest growing segment of the U.S. population is those over 65. In 1880 they numbered fewer than 2 million (3%) of the total population but by 1980 it was over 25 million (11.3%). By the year 2030 an estimated 20 to 25% of citizens is likely to be over 65 (Gilford 1988). Put another way, throughout most of history only one in ten people lived past 65; now nearly 80% do. This traditional use of 65 as a benchmark, however, is deceptive, for the most phenomenal growth will occur in the even older age groups, those over 85. Individuals over 85 constituted 1% of the total population in 1980, but are projected to reach 3% in 2030 and over 5% in 2050. By then they could be nearly a quarter of all elderly people (Gilford 1988). The service implications are worth noting. For while 3-5% of those 65-74 require assistance in basic activities of daily living, over one-third do so by age 85 (Feinstein, Gornick, and Greenberg 1984; National Center for Health Statistics 1983). Thus no matter how it is defined or measured the number of people in the United States with conditions that interfere with their full participation in society will inevitably increase. 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. Recently, these improvements have been supplemented by advances in the specialization of neonatology. Though the numbers are as yet small, it is clear that there are 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 (from leukemia to spina bifida to cystic fibrosis) are now surviving into adulthood or longer. Diagnostic advances, as well as some life-extending technologies, allow many young people to survive with so-called "terminal" illnesses.

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 1,700- over 85% of them- were still alive in the late 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 survivalfirst of 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 aging 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, recognize at least in terminology that some diseases are progressive," we are less inclined to see that there is no one-time, overall adaptation/adjustment to the condition. Even for a recognized progressive or episodic disorder, such as multiple sclerosis, attention only recently has been given to the continuing nature of adaptations (Brooks and Matson 1987). The same is also true for those with end-stage renal disease (Gerhardt and Brieskorn-Zinke 1986). With the survival into adulthood of people with diseases that once were fatal come new changes and complications. Problems of circulation and vision for people with diabetes, for example, may be due to the disease itself, the aging process, or even the original life-sustaining treatment (Turk and Speers 1983). Ivan Illich (1976) in particular has drawn public attention to the iatrogenic costs of many medical interventions - costs that may show up only after many years, as one ages, or all too frequently in subsequent generations.

Perhaps the most telling example of a new manifestation of an old disease is the current concern over the so-called post-polio, syndrome (Laurie and Raymond 1984). 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 rehabilitation, 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, it is not. Large numbers of people are experiencing new problems some 20-41) years after the original onset. 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 concomitant of aging, the reemergence of a stiff fingering virus, a long-term effect of the early damage or even of the early rehabilitation programs, or something else, is still at issue (Halstead and Wiechers 1985). Whatever the etiology of this phenomenon, there will likely be many more new manifestations of old diseases and disabilities as people survive decades beyond the acute onset of their original diseases or disabilities (Funne, Gingher and Olsen 1989; Sato 1989). Thus, the dichotomy between those people with. a "progressive" condition versus those with a "static" one may well be, generally speaking, less distinct than once thought and indeed be more of a continuum.

Still another source of change is the fit between any impairment and the larger social environment. Simply put, some physical differences become important only in certain social situations (reading and writing difficulties where literacy or speed in literacy is deemed "essential" to success or 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 the very old, and some for only one gender). The lifecycle theorists are quite aware of this and postulate different issues one must contend with and the resulting disablements if one does 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 much shorter; then, each stage took about ten years (i.e., the seven stages of "man" covering three score plus ten). But what does it imply when the "last" stage is "occupied" primarily by women (Doress and Siegel 1987) and continues far beyond a decade, with some Gilford 1988) estimating it could reach forty years or more. Surely neither society in general nor the individuals involved will tolerate one stage of life that covers nearly half of the lifespan. Later life is clearly an uncharted map that will inevitably bring new challenges requiring different capacities and evaluations (Katz et al. (1983) but also involving new diseases, problems and disabilities. Conclusion

While building bridges across constituencies is never an easy one, two final considerations, the empirical and the evaluative, make this coalition an overarching necessity. Empirically, we need to remember these facts: barring sudden death, those who are aging and those who have a disability can be only artificially separated at a particular moment in time. For except for the possibility of sudden death, everyone with a disability will age, and everyone who is aging will acquire one or more disabilities. As for the evaluative component, the words of Erik Erikson (1964 p. 131) proclaim it: "Any span of the life cycle lived without vigorous meaning at the beginning, in the middle, or at the end endangers the sense of life and the meaning of death in all whose life stages are intertwined."
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Article Details
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Author:Zola, Irving Kenneth
Publication:The Journal of Rehabilitation
Article Type:editorial
Date:Oct 1, 1989
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