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--> 6 Disability and the Environment In the past four decades the prevailing wisdom about the cause of disability has undergone profound change. Previous models of absolute determinism that viewed pathology and disability interchangeably and that excluded consideration of the environment have been replaced by models in which disability is seen to result from the interaction between the characteristics of individuals with potentially disabling conditions and the characteristics of their environment. The 1991 version of the Institute of Medicine (IOM) model of disability did not explicitly identify the environment as a factor in disability. Building upon the model presented in Chapter 3, this chapter considers in some depth the ways that the environment can be either enabling or disabling for a person with a pathological condition. The chapter describes in greater detail how cultural norms affect the way that the physical and social environments of the individual are constituted and then focus on a few—but not all—of the elements of the environment to provide examples of how the environment affects the degree of disability. The overall message of this chapter is that the amount of disability is not determined by levels of pathologies, impairments, or functional limitations, but instead is a function of the kind of services provided to people with disabling conditions and the extent to which the physical, built environment is accommodating or not accommodating to the particular disabling condition. Because societies differ in their willingness to provide the available technology and, indeed, their willingness to provide the research funds to improve that technology, disability ulti-
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--> mately must been seen as a function of society, not of a physical or medical process. As described in Chapter 3, disability is not inherent in an individual but is, rather, a relational concept—a function of the interaction of the person with the social and physical environments. The amount of disability that a person experiences depends on both the existence of a potentially disabling condition (or limitation) and the environment in which the person lives. For any given limitation (i.e., potential disability), the amount of actual disability experienced by a person will depend on the nature of the environment, that is, whether the environment is positive and enabling (and serves to compensate for the condition, ameliorate the limitation, or facilitate one's functional activities) or negative and disabling (and serves to worsen the condition, enhance the limitation, or restrict one's functional activities). Human competencies interact with the environment in a dynamic reciprocal relationship that shapes performance. When functional limitations exist, social participation is possible only when environmental support is present. If there is no environmental support, the distance between what the person can do and what the environment affords creates a barrier that limits social participation. The physical and social environments comprise factors external to the individual, including family, institutions, community, geography, and the political climate. Added to this conceptualization of environment is one's intrapersonal or psychological environment, which includes internal states, beliefs, cognition, expectancies and other mental states. Thus, environmental factors must be seen to include the natural environment, the built environment, culture, the economic system, the political system, and psychological factors. The categories and factors in these tables are not exhaustive and are provided as examples of the very broad and pervasive influence of a person's environment. This chapter illustrates how each of these environmental factors can have an impact on disability. Impact of the Physical Environment on the Disabling Process As discussed in Chapter 3, the environmental mat may be conceived of as having two major parts: the physical environment and the social and psychological environments. The physical environment may be further subdivided conceptually into the natural environment and the built environment. Both affect the extent to which a disabling conditions will be experienced by the person as a disability. Three types of attributes of the physical environment need to be in place to support human performance (Corcoran and Gitlin, 1997). The
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--> TABLE 6-1 Some Enabling and Disabling Factors in the Physical Environment Type of Environment Type of Factor Natural Environment Built Environment Enabling Dry climate Ramps Flat terrain Adequate lighting Clear paths Braille signage Disabling Snow Steps Rocky terrain Low-wattage lighting High humidity Absence of flashing light alerting systems first attribute is object availability. Objects must be in a location that is useful, at a level where they can be retrieved, and must be organized to support the performance of the activity. Neither a sink that is too high for a wheelchair user nor a telecommunications device for the deaf (TDD) that is kept at a hotel reception desk is available. The second attribute is accessibility. Accessibility is related to the ability of people to get to a place or to use a device. Accessibility permits a wheelchair user to ride a bus or a braille user to read a document. The third attribute is the availability of sensory stimulation regarding the environment. Sensory stimulation, which can include visual, tactile, or auditory cues, serves as a signal to promote responses. Examples of such cues could include beeping microwaves, which elicit responses from people without hearing impairments, or bumpy surfaces on subway platforms, which tell users with visual impairments to change their location. Table 6-1 presents some examples of enabling and disabling factors in the natural environment. The Natural Environment The natural environment may have a major impact on whether a limitation is disabling. For example, a person who has severe allergies to ragweed or mold, which can trigger disabling asthma, can be free of that condition in climates where those substances do not grow. The physical conditions still exist, but in one environment they may become disabling and in another environment they might not. Another example might be that a person who has limited walking ability will be less disabled in a flat geographical location such as Chicago than he or she would be in a hilly location such as Pittsburgh, although the person would also be more
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--> disabled in both places during the winter than during the summer. Thus, the natural environment, including topography and climate, affect whether or to what degree a functional limitation will be disabling. The Built Environment The physical environment is a complex interaction of built-in objects (Corcoran and Gitlin, 1997). Built objects are created and constructed by humans and vary widely in terms of their complexity, size, and purpose. Built objects are created for utilitarian reasons and also for an outlet for creativity. For instance, built objects such as dishwashers and computers have the potential to enhance human performance or to create barriers. Assistive Technology Another aspect of the built environment is assistive technology. The Technology-Related Assistance for Individuals with Disabilities Act of 1988 (Public Law 100-407), also known as the Tech Act, defines assistive technology devices as "any item, piece of equipment, or product system, whether acquired commercially off-the-shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of an individual with a disability." Thus, assistive technology affects the level to which a functional limitation is disabling. As an illustration, a person whose visual impairment can be corrected by corrective lenses does not technically have a disability. There are numerous other examples of how the environment affects the amount of disability associated with any functional limitation through the use of assistive technology. A person with a hearing impairment who has a TDD can make phone calls to other people who also possess such devices. If there is a relay service, in which an operator translates from TDD to voice telephone, the person who owns a TDD can call anyone. In these situations the impairment does not cause a disability. This example, however, illustrates the fact that it is the intersection of technology and social factors that can be more enabling than just the technology itself. Other examples are that a person who has a speech impairment can "speak" using a computer voice synthesizer or that people with low vision or blindness can read office memoranda or correspondence if he or she has the right computer software. These technologies do not always need to be complex: a person who uses a wheelchair and who works in an office could work effectively if the simple technology of an adjustable desk allowed the desk to be raised to allow the wheelchair to fit under the desk. Through the passage of Public Law 100-407, the federal government affirmed the importance and benefits of assistive technology for the mil-
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--> lions of U.S. citizens with disabilities who need this technology to make their lives more functional and independent. The goals of this law have been operationalized through the National Institute on Disability and Rehabilitation Research (NIDRR) with an annual budget of $39,065,414 (fiscal year 95 allocations for state technology assistance) for the 50 states and U.S. territories that are participating in this program. However, despite the money spent implementing the Tech Act amendments of 1994, many key issues still remain, according to a 1995 report on Technology and People with Disabilities prepared for the U.S. Congress by the Office of Technology Assessment. The report states that, in spite of states' technology-related assistance programs carried out under the Tech Act, there remains ''a need to support systems change and advocacy activities to assist States to develop and implement consumer-responsive, comprehensive state-wide programs of technology-related assistance for individuals with disabilities of all ages." Even with these limitations, more individuals than ever before are using assistive technology to compensate for their disabling conditions and enhance the environment in which they live and work. Universal Design It is frequently the case that the built environment can be modified permanently so that functional limitations become less disabling and personal or temporary assistive technologies are not needed. For example, the presence of ramps increases the ability of wheelchair users to get around and thus decreases the degree to which the condition that led to their use of a wheelchair is disabling. White and colleagues, (1995) found an increased frequency of trips out of the house and into the community for two-thirds of wheelchair users after ramps were installed in their houses. Wider doors, lower bathroom sinks, and grab bars are other examples of modifications to built environments that decrease the degree to which a building itself may be disabling. Lighting patterns and the materials used for walls and ceilings affect the visual ability of all people, even though the largest impact may be on improving the ability of the person who is hard of hearing to hear in a particular room or the ability of a person who is deaf to see an interpreter or other signers. Universal design is based on the principle that the built environments and instruments used for everyday living can be ergonomically designed so that everyone can use them. Traditionally, architecture and everyday products have been designed for market appeal, with a greater focus on fashion rather than function. However, as the population of older adults and people with disabling conditions increases, there has been a greater trend toward universal design.
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--> Today, with the influence of consumer demand and through thoughtful disability policy, greater emphasis is placed on the development of built materials that are ergonomically friendly to users, regardless of their abilities. Universal design is an enabling factor in the environment that allows the user with a functional limitation to become more independent, yet without an additional cost or stigma attached to the particular product. For example, people who were deaf previously had to purchase an expensive closed-captioning unit to attach to their television sets to view closed-captioned programs. Today, as a result of new federal legislation, all new television sets are manufactured with a closed-captioning microchip that allows any user access to broadcast closed captioning. Thus, it is useful not only for deaf users but also for immigrants wishing to learn English, older individuals who are starting to lose their audio acuity, or a person watching a late-night talk show in the bedroom who does not want to wake his or her partner. In all of these ways, the environment affects the degree to which a functional limitation is disabling for a person. However, decisions about the use of technology or built environments are social decisions. The next major section considers the effects of the social and psychological environments on the extent to which a particular functional limitation will be disabling or not. Modifying the Environment External environmental modifications can take many forms. These can include assistive devices, alterations of a physical structure, object modification, and task modification (Corcoran and Gitlin, 1997). Table 62 gives some examples of these. The role of environmental modification as a prevention strategy has not been systematically evaluated, and its role in preventing secondary conditions and disability that accompany a poor fit between human abilities and the environment should be studied. Environmental strategies may ease the burden of care experienced by a family member who has the responsibility of providing the day-to-day support for an individual who does not have the capacity for social participation and independent living in the community. These environmental modifications may well be an effort at primary prevention because the equipment may provide a safety net and prevent disabling conditions that can occur through lifting and transfer of individuals who may not be able to do it by themselves. Rehabilitation must place emphasis on addressing the environmental needs of people with disabling conditions. Environmental strategies can be effective in helping people function independently and not be limited in their social participation, in work, leisure or social interactions as a spouse, parent, friend, or coworker.
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--> TABLE 6-2 Examples of Environmental Modification Environmental Modification Can Occur Through the Use of: Such as: Mobility aids Hand orthosis Mouth stick Prosthetic limb Wheelchair (manual and/or motorized) Canes Crutches Braces Communication aids Telephone amplifier or TDD Voice-activated computer Closed or real-time captioning Computer-assisted notetaker Print enlarger Reading machines Books on tape Sign language or oral interpreters Braille writer Cochlear implant Communication boards FM, audio-induction loop, or infrared systems Accessible structural elements Ramps Elevators Wide doors Safety bars Nonskid floors Sound-reflective building materials Enhanced lighting Electrical sockets that meet appropriate reach ranges Hardwired flashing alerting systems Increased textural contrast Accessible features Built up handles Voice-activated computer Automobile hand controls Job accommodations Simplification of task Flexible work hours Rest breaks Splitting job into parts Relegate nonessential functions to others Differential use of personnel Personal care assistants Notetakers Secretaries Editors Sign language interpreters
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--> Impact of the Social and Psychological Environments on the Enabling-Disabling Process The social environment is conceptualized to include cultural, political, and economic factors. The psychological environment is the intrapersonal environment. This section examines how both affect the disabling process. Table 6-3 provides an overview of some of the points to be made below. Culture and the Disabling Process Culture affects the enabling-disabling process at each stage; it also affects the transition from one stage to another. This section defines culture and then considers the ways in which it affects each stage of the process. Definition of Culture Definition of culture includes both material culture (things and the rules for producing them) and nonmaterial culture (norms or rules, values, symbols, language, ideational systems such as science or religion, and arts such as dance, crafts, and humor). Nonmaterial culture is so comprehensive that it includes everything from conceptions of how many days a week has or how one should react to pain (Zborowski, 1952) to when one should seek medical care (Zola, 1966) or whether a hermaphroditic person is an abomination, a saint, or a mistake (Geertz, 1983). Cultures also specify punishments for rule-breaking, exceptions to rules, and occasions when exceptions are permitted. The role of nonmaterial culture for humans has been compared to the role of instincts for animals or to the role of a road map for a traveler. It provides the knowledge that permits people to be able to function in both old and new situations (Geertz, 1973). Both the material and nonmaterial aspects of cultures and subcultures are relevant to the enabling-disabling process. However, this section focuses primarily on the role of nonmaterial culture in that process. Cultures have an impact on the types of pathologies that will occur as well as on their recognition as pathologies. The former case is the realm of epidemiological studies and so is not relevant here. (Albrecht  has discussed the relationship between culture, social structure, and the types of disabilities that arise from the types of pathologies most likely to be present in those societies.) However, if a pathology is not recognized by the culture (in medical terms, diagnosed), the person does not begin to progress toward disability (or cure).
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--> TABLE 6-3 Enabling and Disabling Factors in the Social and Psychological Environments Element of Social and Psychological Environment Type of Factor Culture Psychological Political Economic Enabling Expecting people with disabling conditions to be productive Having an active coping strategy Mandating relay systems in all states Tax credits to hire people with disabling conditions Expecting everyone to know sign language Cognitive restructuring Banning discrimination against people who can perform the essential functions of the job Targeted earned income tax credits (Yelin and Katz, 1994) Disabling Stigmatizing people with disabling conditions Catastrophizing Segregating children with mobility impairments in schools Economic disincentives to get off SSDIa benefits Valuing physical beauty (Hahn, 1985) Denial Voting against paratransit system No subsidies or tax credits for purchasing assistive technology a SSDI, Social Security Disability Income. Pathway from Pathology to Impairment to Functional Limitation Culture can affect the likelihood of the transition from pathology to impairment. A subculture, such as that of well-educated Americans, in which health advice is valued, in which breast cancer screening timetables are followed, and in which early detection is likely, is one in which breast tumors are less likely to move from pathology to impairments. In a subculture in which this is not true, one would likely see more impairments arising from the pathologies. Cultures can also speed up or slow down the movement from pathology to impairment, either for the whole culture or for subgroups for
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--> whom the pathway is more or less likely to be used. For example, in Bangladesh, where Muslim rules of purdah apply, women are less likely to seek health care because it means a man must be available to escort them in public, which is unlikely if the males are breadwinners and must give up income to escort them, and women are also less likely to seek health care if the provider is male. Thus, their culture lessens the likelihood that their pathology will be cured and therefore increases the likelihood that the pathology will become an impairment. Culture clearly has an impact on whether a particular impairment will become a functional limitation. Impairments do not become limiting automatically. Rather, cultures affect the perception that the impairment is in fact the cause of the limitation, and they affect the perception that the impairment is in fact limiting. If a society believes that witchcraft is the reason that a woman cannot have children, medical facts about her body become irrelevant. She may in fact have fibroids, but if that culture sees limitation as coming from the actions of a person, there is no recognition of a linkage between the impairment and the functional limitation. Rather, any enabling-disabling process must go through culturally prescribed processes relating to witches; medically or technologically based enabling-disabling processes will not be acceptable. If the culture does not recognize that an impairment is limiting, then it is not. For example, hearing losses were not equivalent to functional limitations in Martha's Vineyard, because "everyone there knew sign language" (Groce, 1985). Or, if everyone has a backache, it is not defined by the culture as limiting (Koos, 1954). There are many cross-cultural examples. In a culture in which nose piercing is considered necessary for beauty, possible breathing problems resulting from that pathology and impairment would be unlikely to be recognized as being limiting. Or, in a perhaps more extreme case, female circumcision is an impairment that could lead to functional limitation (inability to experience orgasm), but if the whole point is to prevent female sexual arousal and orgasm, then the functional limitation will not be recognized within that culture but will only be recognized by those who come from other cultures. In all these examples, if the culture does not recognize the impairment, the rehabilitation process is irrelevant—there is no need to rehabilitate a physical impairment if there is no recognized functional limitation associated with it. Pathway from Functional Limitation to Disability Perhaps the most important consideration for this chapter is the ways in which the transition from functional limitation to disability is affected by culture. A condition that is limiting must be defined as problematic—by the
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--> person and by the culture—for it to become a disability. Whether a functional limitation is seen as being disabling will depend on the culture. The culture defines the roles to be played and the actions and capacities necessary to satisfy that role. If certain actions are not necessary for a role, then the person who is limited in ability to perform those actions does not have a disability. For example, a professor who has arthritis in her hands but who primarily lectures in the classroom, dictates material for a secretary to type, and manages research assistants may not be disabled in her work role by the arthritis. In this case, the functional limitation would not become a disability. For a secretary who would be unable to type, on the other hand, the functional limitation would become a disability in the work sphere. A disability can exist without functional limitation, as in the case of a person with a facial disfigurement (Institute of Medicine, 1991, p. 81) living in cultures such as that in the United States, whose standards of beauty cannot encompass such physical anomalies (Hahn, 1988). Culture is thus relevant to the existence of disabilities: it defines what is considered disabling. Additionally, culture determines in which roles a person might be disabled by a particular functional limitation. For example, a farmer in a small village may have no disability in work roles caused by a hearing loss; however, that person may experience disabilities in family or other personal relationships. On the other hand, a profoundly deaf, signing person married to another profoundly deaf, signing person may have no disability in family-related areas, although there may be a disability in work-related areas. Thus, culture affects not just whether there is a disability caused by the functional limitation but also where in the person's life the disability will occur. Culture is therefore part of the mat; as such, it can protect a person from the disabling process and can slow it down or speed it up. Culture, however, has a second function in the disabling process. As discussed above, there is a direct path from culture to disability; the following section presents the indirect paths. The indirect function acts by influencing other aspects of personal and social organization in a society. That is, the culture of a society or a subculture influences the types of personality or intrapsychic processes that are acceptable and influences the institutions that make up the social organization of a society. These institutions include the economic system, the family system, the educational system, the health care system, and the political system. In all these areas, culture sets the boundaries for what is debatable or negotiable and what is not. Each of these societal institutions also affects the degree to which functional limitations will be experienced by individuals as disabling. All of the ways in which intrapsychic processes or societal institutions affect the enabling-disabling process cannot be considered here.
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--> An earlier section of this chapter described how community can be defined in terms of the microsystem (the local area of the person with the disabling conditions), the mesosystem (the area beyond the immediate neighborhood, perhaps encompassing the town), and the macrosystem (a region or nation). Clearly, the economic status of the region or nation as a whole may play a more important role than the immediate microenvironment for certain kinds of disabling conditions. For example, access to employment among people with disabling conditions is determined by a combination of the national and regional labor markets, but the impact of differences across small neighborhoods is unlikely to be very great. In contrast, the economic status of a neighborhood will play a larger role in determining whether there are physical accommodations in the built environment that would facilitate mobility for people with impairments or functional limitations, or both. Finally, economic factors also can affect disability by creating incentives to define oneself as disabled. For example, disability compensation programs often pay nearly as much as many of the jobs available to people with disabling conditions, especially given that such programs also provide health insurance and many lower-paying jobs do not. Moreover, disability compensation programs often make an attempt to return to work risky, since health insurance is withdrawn soon after earnings begin and procuring a job with good health insurance benefits is often difficult in the presence of disabling conditions. Thus, disability compensation programs are said to significantly reduce the number of people with impairments who work by creating incentives to leave the labor force and also creating disincentives to return to work. Political Factors and Disability The political system, through its role in designing public policy, can and does have a profound impact on the extent to which impairments and other potentially disabling conditions will result in disability, as a few examples from recent legislation may indicate. Until the passage of the Americans with Disabilities Act of 1990 (ADA), the civil rights legislation for people with disabilities, employers were free to suppose that people with disabling conditions did not have the capacity to take on certain, specific jobs. With the passage of this legislation the onus shifted, so that such people were legally entitled to be treated as any applicant: employers had to assume that an individual applying for a job did have the capacity to do that job's essential features even if that capacity could only be achieved by reasonable accommodations. Before the passage of ADA it was legal to deny individuals access to work because they could not do the auxiliary aspects of a job, even though they had the capacity to do a
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--> job's essential features. Thus, an applicant for a clerical position could be denied the job on the basis of an inability to make coffee, for example, even if he or she could use a computer and type. The ADA also ensures equal access to public services, housing, transportation, and systems of communication, all with the goal of improving the ability of people with disabling conditions to function in all aspects of daily life. There is much question as to the vigor with which the ADA has been and will be enforced, but there is no question that if it is well enforced it will profoundly improve the prospects of people with disabling conditions for achieving a much fuller participation in society, in effect reducing the font of disability in work and every other domain of human activity. Other public policies affect the extent to which the goals of the ADA will be achieved. The extent to which the built environment impedes people with disabling conditions is a function of public funds spent to make buildings and transportation systems accessible and public laws requiring the private sector to make these accommodations in nonpublic buildings. The extent to which people with impairments and functional limitations will participate in the labor force is a function of the funds spent in training programs, in the way that health care is financed, and in the ways that job accommodations are mandated and paid for. Similarly, for those with severe disabling conditions, access to personal assistance services may be required for participation in almost all activities, and such access is dependent on the availability of funding for such services through either direct payment or tax credits. A final example—one very germane to this report—of how public policy influences the extent to which people with disabling conditions will be able to function in everyday life is the level of public investment in research of all kinds, from discovering the mechanisms by which disabling pathologies arise through developing assistive technologies and finding out the best way of financing their distribution. Thus, the potential mechanisms of public policy are diverse, ranging from the direct effects of funds from the public purse, to creating tax incentives so that private parties may finance efforts themselves, to the passage of civil rights legislation and providing adequate enforcement. The sum of the mechanisms used can and does have a profound impact on the functioning of people with disabling conditions. Psychological Factors and Disability This section focuses on the impact of psychological factors on how disability and disabling conditions are perceived and experienced. The argument in support of the influence of the psychological environment is
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--> congruent with the key assumption in this chapter that the physical and social environments are fundamentally important to the expression of disability. Several constructs can be used to describe one's psychological environment, including personal resources, personality traits, and cognition. These constructs affect both the expression of disability and an individual's ability to adapt to and react to it. An exhaustive review of the literature on the impact of psychological factors on disability is beyond the scope of this chapter. However, for illustrative purposes four psychological constructs will be briefly discussed: three cognitive processes (self-efficacy beliefs, psychological control, and coping patterns) and one personality disposition (optimism). Each section provides examples illustrating the influence of these constructs on the experience of disability. Social Cognitive Processes Cognition consists of thoughts, feelings, beliefs, and ways of viewing the world, others, and ourselves. Three interrelated cognitive processes have been selected to illustrate the direct and interactive effects of cognition on disability. These are self-efficacy beliefs, psychological control, and coping patterns. Self-Efficacy Beliefs Self-efficacy beliefs are concerned with whether or not a person believes that he or she can accomplish a desired outcome (Bandura, 1977, 1986). Beliefs about one's abilities affect what a person chooses to do, how much effort is put into a task, and how long an individual will endure when there are difficulties. Self-efficacy beliefs also affect the person's affective and emotional responses. Under conditions of high self-efficacy, a person's outlook and mental health status will remain positive even under stressful and aversive situations. Under conditions of low self-efficacy, mental health may suffer even when environmental conditions are favorable. The findings from several studies provide evidence of improved behavioral and functional outcomes under efficacious conditions for individuals with and without disabling conditions (Maddux, 1996). How do self-efficacy beliefs affect disability? Following a stroke, for example, an individual with high self-efficacy beliefs will be more likely to feel and subsequently exert effort toward reducing the disability that could accompany any stroke-related impairment or functional limitation. The highly self-efficacious individual would work harder at tasks (i.e., in physical or speech therapy), be less likely to give up when there is a relapse (i.e., continue therapy sessions even when there is no immediate
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--> improvement), and in general, feel more confident and optimistic about recovery and rehabilitation. These self-efficacy beliefs will thus mediate the relationship between impairment and disability such that the individual would experience better functional outcomes and less disability. Psychological Control Psychological control, or control beliefs, are akin to self-efficacy beliefs in that they are thoughts, feelings, and beliefs regarding one's ability to exert control or change a situation. A voluminous amount of literature has been written on the beneficial aspects of control and the need that people have for control over their lives. The research suggests that self-generated feelings of control improve outcomes for diverse groups of individuals with physical disabilities and chronic illnesses (Taylor et al., 1991). The onset of a disabling condition is often followed by a loss or a potential loss of control. What is most critical for adaptive functioning is how a person responds to this and what efforts the person puts forth to regain control. Perceptions of control will influence whether a disabling condition is seen as stressful and consequently whether it becomes disabling. Individuals with disabling conditions who perceive that they have control over the management of their health, rehabilitation, and related outcomes will fare better. Under conditions of perceived lack of control, people with disabling conditions are not likely to engage in behaviors (e.g., attend therapy or advocate for civil rights) to reduce disabling conditions and improve functional outcomes. Under these circumstances, the relationship between impairment and disability becomes circular. Once disability increases, so may the level of impairment and functional limitation as a result of not pursuing rehabilitation therapy. Conversely, under conditions of perceived control, a person is likely to engage in behaviors that will subsequently reduce disability. Once disability is reduced, one's level of impairment may subsequently be reduced. Under conditions of perceived loss of control, the individual may actively cope to restore control through primary control efforts (e.g., engaging in behaviors directed at changing the external environment to fit the needs of the person) and secondary control efforts (e.g., engaging in thoughts and actions directed at changing one's views of self through mechanisms such as setting goals and adjusting expectations). An example of primary control would be a person with decreased mobility moving from a building with no elevators to a building with elevators. An example of secondary control would be when this individual changed his or her beliefs about the importance of mobility. What is relevant in this case is not whether the individual has actual control but whether the person perceives that he or she has control.
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--> Coping Patterns Coping patterns refer to behavioral and cognitive efforts to manage specific internal or external demands that tax or exceed a person's resources to adjust (Lazarus and Folkman, 1984). Generally, coping has been studied within the context of stress (Young, 1992; Zautra and Manne, 1992). Having a disabling condition may create stress and demand additional efforts because of interpersonal or environmental conditions that are not supportive. Several coping strategies may be used when a person confronts a stressful situation (Stewart and Knight, 1991; Affleck et al., 1992). These strategies may include the following: seeking information, cognitive restructuring, emotional expression, catastrophizing, wish-fulfilling fantasizing, threat minimization, relaxation, distraction, and self-blame. The beneficial effects of certain coping efforts on adaptive and functional outcomes among individuals with disabling conditions have been demonstrated in several studies (Revenson and Felton, 1989; Kleinke, 1991; Affleck et al., 1992; Brown et al., 1993; Hanson et al., 1993; Zea et al., in press). In general, among people with disabling conditions, there is evidence that passive, avoidant, emotion-focused cognitive strategies (e.g., catastrophizing and wishful thinking) are associated with poorer outcomes, whereas active, problem-focused attempts to redefine thoughts to become more positive are associated with favorable outcomes (Affleck et al., 1992; Young, 1992; Zautra and Manne, 1992; Brown et al., 1993; Hanson et al., 1993). An adaptive coping pattern would involve the use of primary and secondary control strategies, as discussed earlier. What seems useful is the flexibility to change strategies and to have several strategies available (Stewart and Knight, 1991; Dunkel-Schetter et al., 1992). In one study, Jarama (1996) investigated the role of active coping on mental health and vocational outcomes among people with diverse disabling conditions. The findings from that study indicated that active coping is a significant predictor of mental health and employment-related outcomes. Under conditions in which individuals with disabling conditions use active and problem-solving coping strategies to manage their life circumstances, there will be better functional outcomes across several dimensions (e.g., activities of daily living, and employment) than when passive coping strategies are used. An important component in the coping process is appraisal. Appraisals involve beliefs about one's ability to deal with a situation (Young, 1992; Zautra and Manne, 1992). Take, for example, two people with identical levels of impairment. The appraisal that the impairment is disabling will result in more disability than the appraisal that the impairment is not disabling, regardless of the objective type and level of impairment. Appraisal is related to self-efficacy in the sense that one's thoughts and cog-
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--> nition control how one reacts to a potentially negative situation. When a person feels that he or she can execute a desired outcome (e.g., learn how to use crutches for mobility), the person is more likely to do just that. Similarly, under conditions in which an individual appraises his or her disabling conditions and other life circumstances as manageable, the person will use coping strategies that will lead to a manageable life (i.e., better functional outcomes). Personality Disposition Optimism is a personality disposition that is included in this chapter as an example of a personality disposition or trait that can mediate how disabling conditions are experienced. Several other interrelated personality factors could be discussed (e.g., self-esteem, hostility, and Type A personality). Optimism (in contrast to pessimism) is used for illustrative purposes because it relates to many other personality traits. Optimism is the general tendency to view the world, others, and oneself favorably. People with an optimistic orientation rather than a pessimistic orientation fare better across several dimensions. Optimists tend to have better self-esteem and less hostility toward others and tend to use more adaptive coping strategies than pessimists. In a study of patients who underwent coronary artery bypass surgery, Scheier at al. (1989) found that optimism was a significant predictor of coping efforts and of recovery from surgery. Individuals with optimistic orientations had a faster rate of recovery during hospitalization and a faster rate of return to normal life activities after discharge. There was also a strong relationship between optimism and postsurgical quality of life 6 months later, with optimists doing better than pessimists. Optimism may reduce symptoms and improve adjustment to illness, because it is associated with the use of effective coping strategies. This same analogy can be extended to impairment. Optimistic individuals are more likely to cope with an impairment by using the active adaptive coping strategies discussed earlier. These in turn will lead to reduced disability. Summary Four constructs of the psychological environment (i.e., self-efficacy beliefs, psychological control, coping patterns, and optimism) were highlighted to illustrate the influence of these factors on disability and the enabling-disabling process. These psychological constructs are interrelated and are influenced to a large extent by the external social and physical environments. The reason for the inclusion of the psychological environment in this report is to assert that just as the physical and social environments can be changed to support people with disabling conditions, so can the psychological environment. In fact, voluminous empirical research sup-
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--> ports the fact that psychological interventions directed at altering cognition lead to improved outcomes (i.e., achievement, interpersonal relationships, work productivity, and health) across diverse populations and dimensions. However, relatively little research has been directed at understanding the process by which the psychological environment can be enhanced for people with disabilities. This research is needed. The Family and Disability The family can be either an enabling or a disabling factor for a person with a disabling condition. Although most people have a wide network of friends, the networks of people with disabilities are more likely to be dominated by family members (Norris et al., 1990; Knox and Parmenter, 1993). Even among people with disabilities who maintain a large network of friends, family relationships often are most central and families often provide the main sources of support (Schultz and Decker, 1985; Brillhart, 1988). This support may be instrumental (errand-running), informational (providing advice or referrals), or emotional (giving love and support) (Clark and Rakowski, 1983; Croog et al., 1989; Norris et al., 1990). Families can be enabling to people with functional limitations by providing such tangible services as housekeeping and transportation and by providing personal assistance in activities of daily living. Families can also provide economic support to help with the purchase of assistive technologies and to pay for personal assistance. Perhaps most importantly, they can provide emotional support. Emotional support is positively related to well-being across a number of conditions. In all of these areas, friends and neighbors can supplement the support provided by the family. It is important to note, however, that families may also be disabling. Some families promote dependency. Others fatalistically accept functional limitations and conditions that are amenable to change with a supportive environment. In both of these situations, the person with the potentially disabling condition is not allowed to develop to his or her fullest potential. Families may also not provide needed environmental services and resources. For example, families of deaf children frequently do not learn to sign, in the process impeding their children's ability to communicate as effectively as possible. Similarly, some well-meaning families prematurely take over the household chores of people with angina, thereby limiting the opportunity for healthy exercise that can lead to recovery. Current Research Efforts As part of its general review and assessment of current rehabilitation-related research (e.g., abstracts from the various federal agencies, surveys
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--> TABLE 6-4 Review of Abstracts Describing ''Disability" for How Environment Is Included in Study Design: Summary of Findings Focus of the Abstracts Number of Abstracts Research, environment as: Dependent 4 Independent 34 Unknown 29 Other 4 Neither 2 Assistive technology 41 Center grants, environment as: Dependent 1 Independent 13 Unknown 8 Other 8 Neither 0 of consumer groups, and focus groups), the committee made a concerted effort to identify and evaluate activities and areas of interest that focused on the environment as an independent variable, that is, where the focus is on the effects of the environment in causing disability. Abstracts Of the original sample of abstracts that were retrieved from Computer Retrieval of Information on Scientific Projects and from the other (non-Public Health Service) agencies and that were reviewed by the entire committee (a total of 388), 130 were identified as including some focus on "disability." These abstracts were subsequently reviewed further for their focus on the environment as a causal factor, that is, as an independent variable in a study that evaluated disability in some manner. It was often difficult to assess the particular relevance of the environment in the individual studies. Those that did in fact seem to address the environment in some clear fashion were very small in number (see Table 6-4). The conclusion that can be drawn as a result of this qualitative assessment is that very little research focuses on the environment as an independent variable. Only 34 abstracts seemed to include any aspect of the environment as an independent variable.
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--> Conclusions and Recommendations This chapter has suggested that the environment and characteristics of the individual conjointly determine disability. This chapter has cited numerous examples of how the natural and built environments, the culture of society and its social and economic structures, and the intrapersonal processes of the individual affect whether disability arises from any particular medical condition. Table 6-5 reviews some of this information. It indicates not only what is known about the contribution each makes to the enabling-disabling process, but also where there are gaps in our knowledge. It shows that much research is needed in order to specify ways in which different aspects of environments contribute to this process. The importance of the environment in increasing or decreasing the font of disability is reflected in such recent legislation as the ADA, which mandates equal opportunity to participate in all dimensions of life and which requires reasonable accommodation in the environment to achieve that goal. The importance of the environment is also reflected in the published guidelines for funding of the two major federal research organizations concerned with disability: the National Institute of Health's NCMRR and the U.S. Department of Education's NIDRR. Despite the growing recognition of the importance of the environment in determining the prevalence of disability, the committee could find relatively little research that explicitly focuses on the impact of the environment on disability. Even though environmental variables do appear in the research, they are seldom the independent variable. Moreover, in much of the research included in the total number of abstracts, the environmental focus is only a small part of a larger project or center grant. Accordingly, the true magnitude of the effort spent on environmental research is much less than even the relatively small total would indicate. Table 6-5 presents a summary of what is known and what is unknown and needed in the way of information with respect to cultural, psychological, political, and economic factors that affect disability. In addition, the committee offers the following specific recommendations: Recommendation 6.1 In accordance with the current understanding of the importance of the environment in causing disability, more research is needed to elucidate and clarify that relationship. Such clarification will facilitate the development of more and improved intervention strategies, both preventive and rehabilitative. More specifically, research is needed to: • explicitly determine the relationships between the environment and disability where environmental factors are the independent variables, and disability, is the dependent variable,
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--> TABLE 6-5 Rehabilitation Science and Engineering Needs in Disability Condition or Category What Is Known or Available What Needs to Be Known (unknown/needed) Culture Culture affects the acceptance of functional limitations 1. Are cultures more (or less) accepting of functional limitations? 2. What characteristics of U.S. culture are more or less accepting of different types of functional limitations? 3. What characteristics of other cultures make them more accepting of functional limitations? 4. What values and beliefs of subcultures in the United States affect how disability is perceived and ultimately experienced? Psychology Psychological factors (e.g., traits, beliefs, thoughts, and coping strategies) affect how limitations and disability are experienced 1. What is the relative contribution of different psychological factors on how disability is experienced? 2. How do psychological factors interact with culture to affect the experience of disability? 3. At what stage of the disabling-enabling process are psychological factors likely to have the greatest impact on how disability is experienced? 4. What is the differential impact of the type of psychological interventions on the experience of disability? Economic factors Economic factors affect the extent to which disability is experienced 1. To what extent do the economic resources of the person and family affect ability to purchase such services as personal assistance and assistive technology? 2. How do differences in the economic resources of adjoining communities affect the extent to which impairments and limitations will result in disability? 3. How do major differences in the economic resources of nations affect the extent to which impairments and limitations will result in disability? Political factors Public policy affects the objective and subjective experience of disability 1. Has the ADA affected the practices of hiring people with limitations? 2. To what extent are public and private entities improving accessibility to their facilitieseither retrofitting old ones or making new ones that comply with architectural standards? 3. Have efforts to educate children with and without disabling conditions together decreased discriminatory attitudes and behaviors among those without disabling conditions 4. How do the different definitions of disability in such federal programs as Social Security, Vocational Rehabilitation, and Individuals with Disabilities Education Act affect the extent to which people with limitations participate in work or school?
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--> • identify critical factors in work ,family, and community environments that enable people with functional limitations. Recommendation 6.2 The composition of study sections at NIH and other agencies that have relevance to disability issues should be broadened to include the expertise and awareness that is reflected in the model of disability that is described in this report.
Representative terms from entire chapter: