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 betwen
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
--improving education
--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
--fostering peace
--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.
--other
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).
SUMMARY:
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.
|
.gif){kind=spacer}
