CODI: Cornucopia of Disability Information
Chapter 1: Disability, Quality Of Life, & Knowledge Utilization
Chapter 1: Disability, Quality Of Life, & Knowledge Utilization
To effectively use knowledge and technology to improve the quality of life of people with disabilities requires understanding the many meanings of disability and of quality of life. It also requires exploring whether rehabilitation services and knowledge utilization can make a difference in the quality of life. Understanding the disability constructs helps increase understanding of the relevance of the prosumer concept for people with disabilities.
I. DISABILITY: MEDICAL, LEGAL, AND SOCIAL CONSTRUCTS
Disability: What is it? Who defines it? Who has it? Is it contagious?
Disability is a medical, legal, and social construct that has evolved over time. As a medical construct, disability is intertwined with definitions from the profession of medicine on illness, sickness, diseases, health conditions, and impairment. As a legal construct, disability is defined by Congress in such Acts as the Soldiers Rehabilitation Act, Workmen's Compensation, the Rehabilitation Act, Social Security Act, the Education for all Handicapped Children Act, Disability Reform Act, and the more recent Americans with Disabilities Act. As a social construct, disability is defined by "a formal administrative category that determines the rights and privileges of a large number of people" (Stone, 1984:27).
Each construct affects the other constructs. Medical advances enabled the structuring of the first disability legislation for soldiers and later for civilians. When the proposed legislation for Social Security Disability Insurance was being debated in the 1950's, the medical profession told members of Congress that they could not determine disability. They gave two reasons (1) because "medicine is not an exact science" and (2) "disability is a social and psychological problem not amenable to exact definition by physicians" (Ibid, 80). Congress rejected their arguments saying there is no other group better qualified to make judgments about the potential impact of physical and mental disabilities on work abilities. Today most federal and state disability or rehabilitation programs require medical certification as entree' into the service system.
Even as the medical construct impacts the legal construct the legal construct impacts the social construct. Disability legislation triggers social responses. Those responses include stereotypes, stigma, and myths about disability. Accurate information can help dispell myths.
A. Disability as a medical or health construct
According to the World Health Organization's International Classification of Impairment, Disability, and Handicap (1980),
-- an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function.
-- a disability is any restriction or lack [resulting from an impairment] of ability to perform an activity in the manner or within the range considered normal for a human being.
-- a handicap is a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal [depending on age, sex, and social and cultural factors] for that individual.
Wright (1980) in the book Total Rehabilitation pointed to the differences in traditional rehabilitation terminology and terminology of the American medical profession. Disability, as used by rehabilitation professionals, refers to a medical condition that causes a handicap. Physicians, on the other hand, "call the result of the medical impairment a 'disability,' referring to a narrower range of phenomena than that referred to by handicap" (Ibid, 69).
Halstead & Grabois (1985), in differentiating between the medical and rehabilitation models of health care, define disease as: "the interaction of a pathological process with individual molecules, cells, and organs; it is essentially a biological event. Disability or illness, however, is essentially a human event. It represents the resulting interaction of a person with a disease" (Ibid, 2). The Harris pollsters defined a survey respondent as being disabled if: (l) the individual had a disability or health problem that prevented him or her from participating fully in work, school, or other activities; (2) the individual said that he or she had a physical disability, a seeing, a hearing, or speech impairment, an emotional or mental disability, or a learning disability; or (3) the individual considered himself or herself disabled, or said that other people would consider him or her disabled (NCH:1988:12).
The National Council on Disability recommended that this approach be considered as a beginning conceptual model for Federal agencies to use in developing more adequate instruments and studies on disability and its incidence and prevalence (Ibid).
To facilitate physicians working with service providers or disability determiners who use legal constructs of disability, the American Medical Association developed a guide to the evaluation of permanent impairments. Today local physicians use such guides in evaluating clients for disability evaluation under the Social Security Act, Workers Compensation, veterans' pensions, [rehabilitation services], and liability suits (Stone, 1984:110).
B. Disability as a legal construct
As a legal construct disability definitions begin with legislation passed by Congress and the President. Most of the legal definitions of disability are linked to specific benefits or services from a given program. The legal defini tions of disability have been applied to wounded soldiers, injured industrial workers, congenitally and adventitiously impaired students, social security insurance beneficiaries, as well as individuals with physical or mental impairment needing help in entering, returning to, or remaining in gainful employment or independent living. While each program--Veterans, Vocational Rehabilitation, Special Education, Social Security Disability Insurance, Workman's Compensation, etc.--has delineated carefully the criteria for determining disability and eligibility to that program, it has continued to rely on the medical profession's interpretations of impairment as its foundations.
The latest legal definition of disability became law July 26, 1990, in the Americans with Disabilities Act. That Act defines disability as: "a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment."
C. Disability as a social construct
Laws are subject to interpretations by regulatory and administrative bodies at the federal, state, and local levels as well as by the courts. The judicial system, through its case by case interpretations of laws and contracts, has expanded administrative definitions of disability. For example, insurance companies as far back as 1910 have included disability clauses in their life insurance policies and defined disability as "wholly" or "totally" unable to work. Courts reasoned that literal interpretations would deny people the protection for which they had purchased the insurance (Stone, 1984:74). Therefore, claimants received compensation they otherwise might have been denied. Similarly, the courts restored back to the Social Security Disability Insurance rolls individuals who claimed that they had been inappropriately changed from "disabled" to "nondisabled" status (Mezey, 1988:1).
Claire Liachowitz (1988) traced the history of disability in American society through historical and legal documents stemming from the eighteenth century. She concluded as have others (such as Robert Scott the author of The Making of Blind Men) that disability is a social construct and not limited to physical status. As a social construct disability has been linked with poverty and nonproductivity, dependency and segregation, charity work and public care giving, entitlements and more recently rights (Ibid).
Deborah Stone (1984) also defined disability as a social construct. She compared disability in European as well as American societies and concluded that "disability is a formal administrative category that determines the rights and privileges of a large number of people" (Ibid, 27). As a category "disability accounts for a substantial proportion of income redistribution" (Ibid, 4). Medical certification validates the genuineness of disability and thereby attempts to weed out deception, which in the modern understanding of disability, "has become part and parcel of the concept itself" (Ibid, 28). As an administrative category that grants privileges, it carries with it permission to enter the need-based system and to be exempt from the work-based system. It can also provide exemption from other things people normally consider worth avoiding: military service, debt, and criminal liability (Ibid, 28).
The connections between disability definition and the work world can be found in several legislated programs such as Social Security, Rehabilitation, Veterans Administration, and others. Stone says: "Nowhere is the connection between disability definition and labor force requirements more explicit than in the American Social Security 'vocational grid,' with its matching of individual characteristics to the operational requirements of jobs, and in the notion of 'residual work capacity' (Ibid, 180).
The administrative category of disability is flexible and adaptable to interpretation from varied political contexts (Ibid). Flexibility enables legislators to "press simultaneously for eligibility of specific constituents and for wholesale trimming of the rolls" (Ibid, 182). It can be used to present a more positive economic picture of society. "When people go on disability pensions instead of unemployment insurance, they are no longer part of the labor force and therefore not counted in the unemployment rate. In times of high unemployment, flexible disability categories provide a holding tank where otherwise unemployed can be 'hidden' (Ibid, 181). Since employers do not pay direct premiums for Social Security disability programs, they can shift their less productive workers into such social insurance schemes (Ibid, 181).
States also benefit from the flexibility in definition (Mezey, 1988). Their welfare roles were lessened as people with disabilities became eligible for federal disability benefits. The states revolted, Mezey says, when the Social Security Administration changed its eligibility regulations and began claiming large groups of beneficiaries as "no longer disabled" who previously had been found disabled and had had no medical improvement in their conditions. Disenfranchised beneficiaries went to court. The courts awarded reinstatement to many of the claimants. SSA refused to categorically make changes in its interpretations of the law, i.e., nonacquiesced to the courts' mandates. States got the brunt of SSA's decisions and refused to process claims. They knew relinquishment of benefits meant increased enrollment in the state welfare programs. Thus was born the Disability Reform Act of 1984. It directed changes in administrative practices regarding the definition of disability. The Act also clarified somewhat where the burden of proof of disability lay, especially for those already on the rolls of beneficiaries.
Disability as a medical, legal, and social construct reflects the power struggles among the branches of government: legislative, judicial, and administrative. The ongoing attempts to reduce beneficiaries in entitlement programs is the prime example. In discussing the 1984 Disability Reform Act, Mezey (1988) summed it up this way. "While the debate over nonacquiescence was temporarily shelved, the issue of the supremacy of the rule of law over SSA's procedural autonomy has not been resolved; it seems quite likely that before too long, the controversy will resurface and Congress will be forced to confront it again" (Ibid, 166). The combined construct also reflects the power struggles among the disciplines to access the scarce resources available to study and serve the needs of people with disabilities. For people with disabilities the combined construct reflects the power struggles with being accepted into the mainstream of society.
D. Who has a disability?
Surveys such as conducted by the Census, the National Health Statistics, and Harris Polls most often tap self definitions of disability. It is more often that data source rather than the medical or program administration source that enters the demographics on disability. Because of the varied definitions of disability and inconsistent survey methods that hinder aggregation of available data, the estimates of Americans with disabilities begins at 20 million and ends at 50 million (NCH:1986:3). The most common estimate is 35-36 million (Ibid).
The Harris polls estimated the incidence of disability at fifteen percent (Ibid, 12). Fifty-eight percent of people with disabilities were 55 years of age or older; seventy-one percent were 45 or older (Ibid,13). Several studies show linkages between disability and poverty; the Harris data confirmed these. Half of all disabled persons they surveyed by phone had incomes of $15,000 or less. "Fully one in three (32%) of disabled persons aged 65 and over report a household income of $7,500 or less" (Ibid, 14).
The National Center for Health Statistics has estimated from its Health Interview Survey that there are over 160 million impairments and chronic conditions in the civilian noninstitutionalized population of the U.S. (Mathematica Policy Research, 1984:3 cited in Ibid, 3). Those figures include varied conditions not categorized as disabilities (such as circulatory, respiratory, digestive, skin and musculoskeletal) and omits conditions included as disabilities related to learning and mental conditions (Ibid, 3).
The 1980 Census of Population presents estimates from the work disability perspective. "Of the 170 million people ages 16 and above counted in 1980, 22.7 million reported having work disabilities....work disability studies tend to underestimate the total numbers of people with disabilities and to overestimate the unemployment and nonparticipation in the labor force rates of people with disabilities"(Ibid, 3).
Since people with disabilities are often linked with other statistics such as the unemployment rate, the poverty threshold, race and ethnicity, and educational attainments, it is important also to recognize the limits of those statistics. Denis Johnston (1983) warned researchers and public policy advisors to take heed to the limits of definitions used in the census data. For instance, census takers classified a person as unemployed "if, during the specified one-week reference period, they were in the civilian noninstitutional populations, were 16 years old or older, were without paid employment of one or more hours' duration, were currently available for work, and were actively seeking employment" (Johnston, 1983:101).
What is not found in this classification, are indicators of the severity of the phenomenon in question, the intensity of the job search or the terms of employment that the job seeker deems acceptable (Ibid, 102). It does not distinguish among the varied forms of underemployment and it does not consider the duration of unemployment in question. Yet remedial programs are launched according to the rise and fall of the unemployment rate. Remember also that people with disability counted in the unemployment figures are those not receiving SSDI as mentioned previously. Beneficiaries are considered a separate grouping.
The Census Bureau now has a plan and draft of a questionnaire for taking a census of people with disabilities. The plan, however, cannot be executed under the current limited resources of the Census Bureau and the bureau has not requested additional funds to carry it out.
E. Traditional & progresssive models of disability
John Clogston summarized four models of disability: the medical model, the social pathology model, the minority/ civil rights model, and the cultural pluralism model (1989). The first two models he described as traditional and the latter two as progressive. Traditional models differ from progressive ones in terms of the source of the problem related to disabilities. The former places the source of the problem with the individual and the latter with society.
The medical model defines disability as an illness and portrays the person with disability as dependent on health professionals for cures or maintenance. The individual with the disability is in a passive role and ceases routine activities during the illness (Ibid).
Under the social pathology model, the person with disability is portrayed as disadvantaged and looking to the state or society for economic support as a gift (Ibid). Persons with disabilities under the minority/civil rights model are shown as members of a minority group with legitimate political grievances with certain rights. The cultural pluralism model considers the person with disabilities as multifaceted individuals with similarities to others without disabilities, i.e., disability receives no special attention (Ibid).
In summary, under the medical and social pathology models, people with disabilities remain in dependent and passive roles. Under the rights model they become more independent and active. Under the cultural pluralism model they receive no special treatment; they are mainstreamed and integral parts of society.
F. Language as a definer of disability
Language sometimes, unwittingly, defines disability. References to people with disabilities such as 'the disabled,' have made disability the single criteria of personhood, i.e., status as human beings. Portrayals of this population in the media have incorporated language such as "confined to a wheelchair," "suffering from M.S.," "courageous cripples," "victims or survivors of polio," etc. Portrayals of people with disabilities as superhuman or subjects to be pitied have generated debate. Ellen Liberti, in a 1980 memo to the then director of the National Institute of Handicapped Research, stated: "We should avoid 'super crip' images, but seek effective, new symbols. One might be the hallowed art of mime. The mime deprives himself voluntarily of one of his functions and yet communicates just as, or more effectively than those who use speech" (p.1).
Disability activists have debated other terminology such as "physically challenged," "differently abled," or for the so-called normals "temporarily able bodied." They now seek the right to define and name themselves and say what is valid and true about them (Calabro & Borkman, 1990).
What is ironic about defining disability is that no one has yet derived an acceptable definition of "normal."
G. Is disability catching/contagious?
In 1986 the Supreme Court in the case of School Board of Nassau County, Florida vs. Arline "articulated the position that contagiousness is not a legitimate reason to negate disability rights protections as outlined in section 504" (Percy, 1989:252). This paved the way for people with AIDS to be included in coverage of future disability rights legislation. The Americans with Disabilities Act, signed into law by President Bush on July 26, 1990, did include AIDS among those disability groups, "as currently covered by the Rehabilitation Act of 1973, as confirmed in the Arline decision, and as recommended by President Reagan's Commission on AIDS" (Morrissey, 1990:6).
II. QUALITY OF LIFE (QOL)
A. What is it?
The quality of life concept became vogue in the 1960's. Initially it was applied to income, nutrition, and shelter. Later quality of life took on other meanings such as "satisfaction with life" or "as good as someone else's life." Since that time studies have looked at quality of life from society's perspective and from the individual's perspective.
Terleckyj (1975) looked at quality of life indicators from a societal perspective. He identified social concerns and developed indicators and trends for the United States. He used national goals research, social indicator analyses, public affairs discussions, public opinion surveys, and the classification used for consumer and governmental expenditures to develop the initial set of concerns. He grouped social concerns into the following goal categories: health and safety; education, skills and standard of living; income; economic equality; human habitat; art, science (pure), and free time.
He subsequently identified one or two indicators to estimate past, present, and future changes in those categories, i.e., goal output areas. Then he identified related discretionary activities and subactivities and attached cost estimates for a ten-year period at full capacity. Sample activities under health included smoking reduction @ $5 billion, fitness and diet improvements @ $35 billion, accident prevention at $1 billion, alcoholism abatement at $17 billion, and drug abuse abatement at $6 billion. Finally, he charted the effects of the activities on the goal output indicators.
The World Health Organization defined health as "not only the absence of infirmity and disease but also a state of physical, mental, and social well-being" (Campbell, 1981:13). Campbell also said that affect, satisfaction, and strain tap at differing angles into the quality of human experience which he calls the "sense of well-being." He identified nine assumptions underlying the experience of well-being. Sense of well-being is perception-based, individualized, and dichotomized in terms of: satisfaction-dissatisfaction and positive and negative affect (Ibid).
Satisfaction-dissatisfaction is a function of the gap the individual perceives between his or her present situation or status and the situation or status he or she aspires to, expects, or feels entitled to (Ibid). Change in satisfaction level may result from a change in perceived situation or a change in aspiration level or both. Affect reflects the spontaneous feelings of pleasure and misery associated with events in the individual's immediate experience. These events are both positively and negatively toned, and their sum determines the individual's affect balance. Satisfaction and affect are both associated with specific domains of life. They are also experienced at the level of life as a whole. Changes in sense of well-being follow either from changes in the individual's objective circumstances or in changes in the psychological perspective from which the individual perceives these circumstances (Ibid, 24).
Using Erik Allardt's language, Campbell said sense of well-being depends on satisfying three basic kinds of needs: need of having, of relating, and of being (1981).
In 1971 Campbell studied domains of satisfaction such as marriage, family life, friendships, standard of living, work, neighborhood, city or town or residence, the nation, housing, education, health. In 1978, after reviewing other studies in which the self was highest, he added self to the list of domains. He found that satisfaction in self, standard of living, family life, marriage, friends, and work has the greatest influence in accounting for the level of satisfaction people feel with their lives in general. With the exception of the addition of the self, the satisfaction levels with the 1971 domains changed very little. "Specific individuals depart dramatically from this general pattern as the circumstances of their lives differ from the average, but the pattern for the population at large was very stable through the decade of the 1970's" (Campbell, 1981).
Chobun (1990) looked at quality of life, not only from the individual perspective, but also from the perspective of people who have disabilities. He developed and validated a 20-item life satisfaction scale to assess quality of life. His items include those derived from previous studies and those derived through critical incidents technique. The former encompasses work, leisure, nutrition, sleep, social nurturance, earnings, health, love/affection, environment, and self-esteem. The latter includes security, public support, stress, mobility, autonomy, energy level, social support, mood/affect, outlook, egalitarianism. Items rejected through analysis, but derived through critical incidents technique, covered parenting, discrimination, spirituality, purposefulness, comfort/pain, personal expression, and school. He incorporated school into the work item.
Chobun normed his instrument on people with the following disabilities: chronic illness or disabling conditions, including cancer, diabetes mellitus, heart disease, multiple sclerosis, spinal cord injury, muscular dystrophy, epilepsy, and blindness. Both institutionalized and noninstitutionalized individuals completed the survey. Reliability and validity studies confirm its discrimination capabilities between groups with and without health related life quality differences (Chobun, 1990:6).
B. Does rehabilitation improve Quality of Life?
Yes, say service providers; rehabilitation services improve the quality of life by helping clients become productive citizens or live independently. Yes, say administrators; statistics show money spent on rehabilitation of people with disability produces taxpayers instead of welfare recipients. Yes, concur legislators, who set in place laws such as the Rehabilitation Act, Disability Reform Act, Technical Assistance Act, and the Americans with Disabilities Act.
Others say, the best rehabilitation efforts may increase functioning but not improve the quality of life. Why? Partly, because to enter the formal rehabilitation system requires accepting the label of disabled or handicapped with its socialization processes and associated stereotypes, stigma, and myths. Partly, because there are still physical and societal barriers inhibiting fulfillment of quality of life. The United Nations Expert Group Meeting on Barrier-Free Design reported:
Despite everything we can do, or hope to do, to assist each physically or mentally disabled person achieve his or her maximum potential in life, our efforts will not succeed until we have found the way to remove the obstacles to this goal directed by human society--the physical barriers we have created in public buildings, housing, transportation, houses of worship, centers of social life, and other community facilities--the social barriers we have evolved and accepted against those who vary more than a certain degree from what we have been conditioned to regard as normal. More people are forced into limited lives and made to suffer by these man-made obstacles than by any specific physical or mental disability (NCH, 1986:1).
The rights of disabled persons as declared by the United Nations (1976) states: "Disabled Persons have the same fundamental rights as their fellow citizens of the same age, which implies first and foremost, the right to enjoy a decent life, as normal and full as possible."
The Americans with Disabilities Act addresses those civil rights and sets the stage for barrier removal. However, studies on implementation of new legislation indicate that implementation encompasses a political process, an administrative process, intergovernmental relations, and a game between rational actors (Percy, 1989). The political struggles over allocation of costs and benefits associated with new legislation continues into the implementation phase as each interest group vies for its fair share. Administrative skills, interests, commitment, and experiences factor into the level at which implementation will occur. From an intergovernmental frame of reference who retains the allocative decision power--Washington or the state and local governments--affect the eventual implementation. The game metaphor--
directs us to look at the players, what they regard as stakes, their strategies and tactics, their resources for playing, the rules of play (which stipulate the conditions for winning), the rules of 'fair' play (which stipulate the boundaries beyond which lie fraud or illegitimacy), the nature of the communications (or lack of them) among players, and the degree of uncertainty surrounding the possible outcomes (Eugene Bardach, 1977:56 quoted in Percy, 1989:16).
Efforts to implement disability rights may cover only one of the three different approaches to equity: equal treatment, equal access, and equal outcomes (Percy, 1989). The equal treatment approach "requires that all persons be evaluated by neutral rules and standards, regardless of personal characteristics" (Ibid, 245). That neutral approach, however, does not work well in the context of disability rights. Policies based on the equal access approach attempt to "remove obstacles that detract from the ability of protected classes to consume public services and take advantage of social opportunities" (Ibid). Equal outcomes, on the other hand, are more far-reaching--
meaning that the intent of public policies is to equalize specified conditions or situations of protected classes with those of nonprotected individuals. This equalization is sought through various instruments of public policy, oftentimes with the application of the regulatory powers of the state. Achieving equal outcomes customarily requires the provision of unequal treatment to disadvantaged persons in order for their positions to be significantly enhanced. The potent policy measures required to achieve equal outcomes, often involving a substantial redistribution of resources and opportunities, have generally not been politically acceptable within the American political culture...(Ibid, 245-246).
Rehabilitation services can improve the quality of life in concert with other societal changes. Consumers, their families, their friends, and the professionals who serve them must continue to work to assure equal opportunities and equal access. One of several avenues to do this is to help produce the knowledge that serves as a framework for changing attitudes, beliefs, and behaviors.
C. Can knowledge utilization improve the QOL?
An International Study Group conducted an exploratory study on the potential values and benefits of research (1983:30). Five hundred and fifty-nine participants allocated public funds for research according to the following categories:
--preventing or relieving mental or physical illness
--improving the material quality of life
--improving public safety and security
--studying religion and spiritual values
--increasing employment or improving work conditions
--improving or preserving the natural environment
--improving the cultural quality of life
--improving the psychological and social quality of life
--improving national defense
--increasing theoretical or academic knowledge (defined as knowledge that has no obvious or readily explainable practical value in the foreseeable future (i.e., in the next 25 years) other than for teaching or for general information, and that could not be justified under any of the previous headings.
International participants (over-represented in the mental health care field, neuroscience research, and males) allocated twice as much money to relief of illness as to the next three highest categories: material quality of life, natural environment, and education. Knowledge and then psychosocial quality of life held the fifth and sixth rankings in resource allocation (International Study Group, 1983:31).
Dunn and others (1987) in exploring the architecture of knowledge systems described a typology of social impact indicators from science. They reported groupings of social goals in terms of aggregative well-being, distributive well-being, and subjective well-being. Aggregative well-being such as average life expectancy, per capital income, or average educational achievement describe states of societal well-being. Distributive social impact of science (SIS) indicators include concerns with social equity and justice. Subjective well-being SIS indicators relate to perceptions, expectations, or assessments of progress in achieving social goals.
Peters (1987) looked at social impact of science from a quality of life perspective and a policy design perspective. He identified some problems linking quality of life to science:
Not only does one have to be able to make reasonably reliable prospective statements, but one must be able to sort out with some accuracy the sources of variance in complex social processes. For example, how much of the improvement in health indicators in a certain country over a certain period of time is the product of improvements in 'modern medicine,' as opposed to the result of improvements in nutrition, housing, health information, and/or sanitation. It may even be that by diverting funds from relatively cheap health measures such as sanitation, the use of high-technology medicine in many countries of the world might actually have a negative impact on health status. As an extreme example, one study has concluded that the spread of the AIDs virus was triggered by widespread vaccinations against smallpox--a public health measure that is very low technology by most contemporary standards. The monitoring of the impact of technology is a difficult research problem that must at least be addressed if not entirely solved before the policy indicators that might be developed for science will be any great utility for public policy decision making (1987:283).
From these studies we can conclude that knowledge utilization can lead to improved quality of life, however, we do not know to what extent nor under what circumstances. We also do not know to what extent nor under what circumstances it can also hinder improvements or lead to harm. Changing paradigms in disability research may help us address these concerns in the future.
D. Reconceptualizing disability research
PSI International, Inc. (1989) summarized in one of its Rehab Briefs the evolving methodology in disability research. They noted the trends that were challenging the traditional objective, group-based, quantitative model of disability research. Disciplines such as anthropology, history, political science, sociology, and engineering are getting involved in disability research. The availability of statistical software packages for the microcomputers are helping to increase the sophistication of single-case experimental studies. Greater attention at the programmatic and policy levels is being given to people with low-incidence or unique disabilities in varied geographic areas.
This combination of factors, they say, is pointing the way to greater acceptance of single-case, subjective, and qualitative studies as well as to use of naturalistic field observations and content analysis of documents.
Other coinciding actions are also pointing to change:
Scientists with disabilities are observing their lives and using the tools of their trades to do it....The consumer-advocacy thrust has resulted in greater contact between disability professionals and attorneys, so legal research methods have been added to our knowledge-seeking tools. The disability-rights movement, profitsector rehabilitation and a multifaceted consumerism have brought market research techniques into increased relevance. Psychology and engineering have shown how behavioral methods may be joined with engineering research to achieve improved competence. All of these extended techniques are being folded into an increasingly rich disability-research model (PSI, 1989:1-2).
For consumers, there are several implications of changes in disability research. Reading case studies is far easier than reading statistical reports and so some information is more accessible. Consumers can help with research by keeping journals and providing autobiographical accounts of disability experience. With training in self-observation techniques such accounts can become even more useful for other research activities. Sociobehavioral researchers seeking general principles are already subjecting these accounts to content analysis (PSI, 1990:4).
This chapter has differentiated among the varying interpretations of disability and quality of life as well as juxtaposed these with selected studies in knowledge utilization. Improving the quality of life of people with disabilities is possible with the new legislation granting civil rights to people with disabilities, with regulations that help fulfill the intent of the law, and with the use of knowledge gleaned from research studies, exemplary practices, and other quality-oriented studies. More importantly, it is enhanced by consumers sharing in the responsibility and power associated with the production as well as the use of disability and rehabilitation knowledge. Of the disability models--medical, social pathology, rights, and cultural pluralism--the latter two recognize the activism of consumers and their independence. The movement toward a cultural pluralism model of disability builds on the individual responsibility trend noted in Megatrends 1990 and contributes still further to the rationale for a prosumer approach to knowledge production and use.
A LOOK AHEAD:
The next chapter provides the historical framework for knowledge utilization. It discusses the components of the knowledge cycle--knowledge creation, diffusion, and utilization--and issues in knowledge utilization. It provides the foundation for looking at models, factors, and strategies in the knowledge utilization literature and for prosumerism.