It also has been suggested that people with severe physical disabilities experience “secondary disabilities” or health complications that are not a direct result of the acquisition of disability, but reflect longer-term effects of changes in function (Foley, 1995).
There has been some debate as to whether these changes reflect duration of disability or the “premature effects of aging” (Turk et al., 1995). Either way, such changes form some of the myriad of environmental and personal factors mentioned in Chapter 1 as influencing the balance or equilibrium that underlies empowerment (Clark, 1989). The following discussion illustrates the impact of living with a longstanding disability on empowerment and confirms the view of Stoller and Gibson (1994) that minority groups of older people experience obstacles often constructed earlier in the life course that can become handicaps to well-being in later life.
The baby boomer cohort of people with longstanding disabilities has many life experiences that affect their attitudes toward service provision and their ability to negotiate service systems. Many people have experienced deinstitutionalization, have been active in the human rights movement, and have experienced barriers and reduced access to opportunities such as employment, community acceptance, friendships and close personal relationships. These disadvantages throughout life have cumulative effects on well-being, empowerment and quality of life in old age (Ashman & Suttie, 1995). These people are less able to build up financial security and do not have the necessary life skills for making decisions and exercising freedom of choice.
Many are not financially able to retire or are anticipating a lower quality of life and less freedom of choice as compared with others in old age. Many have experienced reduced access to the recreation, leisure and community activities used by other older people (Bigby, 1992). Thus, inequities in access to opportunities throughout life deny people aging with longstanding disabilities the security, well-being, sense of empowerment and experiences that others expect from old age. This results in increased vulner-ability, feelings of powerlessness and low self-esteem (Ashman & Suttie, 1995).
Widely used definitions of healthy or successful aging need reworking to ensure that they include aging with a disability. Healthy aging is generally defined in terms of the maintenance of mental, physical and social health. Butler (1991) defined successful aging in terms of four types of fitness—physical, intellectual, social and purpose. Physical fitness refers to bodily strength, resilience and ability. Intellectual fitness refers to keeping the mind engaged and active. Social fitness involves forming and maintaining significant personal relationships. Purpose fitness refers to having positive feelings of self-esteem and control over one’s life. It can be argued that such definitions reinforce prejudice against older people with disabilities (Office on Disability, 1999). Concepts—particularly of physical and intellectual fitness—need to be redefined in order to acknowledge that it is possible to age successfully with a disability.
In order to achieve the above paradigm shifts, radical steps are required to change the attitudes and knowledge of professionals. Education is required to enhance understanding of issues associated with aging with a disability and in separating out the effects of aging from those of having a disability. As Tremblay et al. (1997) noted, professionals are not fully informed about issues associated with aging with a disability. This lack of knowledge, combined with negative attitudes and beliefs (ageism) form impediments to empowerment because they create situations in which older people receive less than optimal treatment, and are not provided with opportunities for treatments or therapies that could address physical and mental changes in functioning, which are wrongly assumed to be an inevitable part of aging.
Quality of life is closely linked with empowerment. The literature demonstrates considerable overlap in definition of these concepts. Thus, Brown, Bayer and Brown (1992) argue that freedom of choice and empowerment are underlying structures within quality of life models, while Cummins (1997) argues that definitions of quality of life generally incorporate notions about people’s needs and choices within the context of well-being. Like so many other terms, quality of life is a term that forms part of the rhetoric of politically correct professional language and thinking. It is easy to use the term without thinking about what it really means or about whether well-meaning professional behaviors designed to enhance quality of life actually have detrimental effects on empowerment because they can limit a sense of control and freedom of choice.
Quality of life is a broad-ranging concept that incorporates physical health, emotional health, social and economic relationships, and personal beliefs (Cummins, 1997). Narrower definitions emphasize objective or normative characteristics, such as income and social status, or focus on illness or disease as the sole determinant of quality of life. Broader definitions, such as that proposed by Cummins et al. (1997), argue that quality of life is “a universal, multidimensional construct which includes an individual’s personal values in determining the level of satisfaction with various aspects of life conditions.” A succinct description given by Skantz et al. (1992) is that “quality of life is a person’s own subjective evaluation of his or her life situation.” By examining quality of life, the older person’s own evaluation of his or her life quality becomes the prime measure. The focus is on the client’s view of his or her life situation, not that of the professionals.
This means that health and welfare programs that aim to enhance empowerment and to promote quality of life should do so on the client’s terms and in terms of the client’s values, not the currently dominant values within service provision. This view involves a paradigm shift for professionals in many service providers and agencies who think they “know best” or that clients “don’t know what’s best for them.” Thus, concepts of empowerment and quality of life can be seen to conflict with traditional models of service delivery, which prefer clients who do what they are told and do not question decisions made by professionals. Clients who question may come to be regarded as “difficult” and “challenging.” Behavior that reflects a person’s efforts to gain control over his or her environment may be regarded as a threat by those administering service programs (Brown, Bayer & Brown, 1992). Concepts of quality of life and empowerment demand acknowledgment of diversity between clients and the need to be flexible in implementation of services in order to meet individual needs. Such flexibility is difficult when governments and service agencies are implementing policies designed to conserve resources.
According to Cummins (1997) seven life domains are important in any assessment of quality of life. These are: material status, health, productivity, close relationships, safety, community activity and emotional well-being. The Comprehensive Quality of Life Scale (Cummins, 1997) measures these domains in two ways. An objective scale is based on societal norms and a subjective scale requires respondents to indicate their importance and satisfaction with each life domain. In this way, respondents’ perceptions of their lives can be compared with their actual life circumstances.
Research conducted in Sydney, Australia, by Gething, Fethney and Blazely (1998) explored quality of life for older rehabilitation patients following hospital discharge. Results indicated that actual (objective) and perceived (subjective) quality of life both fell during the three months following discharge. The greatest impact on subjective quality of life was experienced one month following discharge. After this time, subjective quality of life began to improve, but at three months was still lower than that at hospital discharge. Comparison with other samples revealed that the objective circumstances of older people following hospital discharge were comparable with other older Australians. However, subjective circumstances were substantially lower, suggesting that the experiences of hospitalization, discharge and having a condition requiring treatment and rehabilitation had major impacts on quality of life.
Furthermore, perceived quality of life was significantly related to perceived confidence in carrying out daily activities. In this project, perceived confidence was a more accurate predictor of quality of life than the standard measures of function and mobility widely used by health professionals when planning hospital discharge. The conclusion was reached that rehabilitation of older hospital clients must build up a person’s functional ability to carry out the activities of daily living, but must also build up confidence in order to ensure that older clients do not become housebound because of lack of confidence. Such a situation would mitigate against participation and reintegration into community life.
