Using Knowledge and Technology to Improve the Quality of Life of People who have Disabilities:

		       Using Knowledge and Technology
       to Improve the Quality of Life of People who have Disabilities:
			     A Prosumer Approach
				     by
			      Laura A. Edwards



INTRODUCTION
     Helping to improve the quality of life for people of people who have
disabilities is an underlying goal; of all stakeholders (i.e., those with a
vested interest) in the field: of rehabilitation.  Stakeholders include
researchers and research utilization specialists as well as clients, parents,
service providers;, educators;, ; and policymakers;;. Researchers have sought
to identify the best medical treatments and rehabilitation practices as well
as disability prevention methods.  Research utilization specialists have
explored ways to effectively transfer research results from the research
community to the user community.  This study explores the state of the art in
knowledge utilization and technology transfer efforts. It applies findings
from multiple disciplines studying knowledge utilization to the field of
rehabilitation. The study identifies an approach that could significantly
advance efforts to produce and use knowledge and technology to improve the
quality of life of people with disabilities.

Complexities of knowledge utilization:
     Over time research utilization specialists have discovered that the
process of getting research into practice is not simple.  It is complex.
Scientific knowledge does not evolve consistently, sequentially, and timely.
It leaves gaps in knowledge; in some instances it helps create ignorance.
Channels for communicating results of research (e.g., media, journals,
libraries, change agents) reach different audiences in different ways and at
different stages of readiness to receive this information. Once the
researched information is received, understood, and deemed worthy of use it
may be used in unexpected ways, not as originally envisioned or studied.
     Changes in society add to the complexities of the knowledge utilization
process in the rehabilitation field.  They also add to the opportunities to
significantly improve the process and to enrich the quality of life of people
with disabilities.  Changes in information access:
     Advances in technology have enabled global communications. For the first
time in history a war has been televised worldwide from its conception to its
inception, from its beginning to its end.  Viewers learned about the workings
of Congress and the workings of the Defense Department. They learned about
fighter planes, night vision technology, and chemical warfare protection.
Everyone had access to the blow by blow accounts through the mass media.
This knowledge raised fears and quelled fears; it unified and it divided; it
enabled and it disabled.
     Technology is providing citizens worldwide with more information and
thus more choices.  This vehicle for information is changing the way people
think about work and the world, about life and relationships, about openness
and secretiveness, about autocracy and democracy, and about war and peace.
     Knowledge is now more accessible to all members of society: the upper
class, the middle class, and the lower class; the young and the old; the
abled and the disabled; the rich and the poor; the black and the white.
Information made accessible through technology is empowering individuals to
help change themselves and their environments.  

Changes in societal roles and structures:
     As some people become better informed they begin moving out of their
dependent and passive roles. They question, they challenge, and they demand
their rights to timely and quality services. They talk to congressmen and
congresswomen about their plight and work to change legislation.  They
develop self-help groups to fill the gaps in professional services. They
refuse to consume inferior, unsafe, or environmentally adverse products. They
monitor and evaluate products and services.  They develop co-operatives,
credit unions, and bartering to show dissatisfaction with the marketplace.
They even in some instances begin producing for themselves, their family, and
their friends.  Information access provides knowledge that can lead to action
or retreat from the responsibilities associated with knowledge.  The more
independent and active roles consumers assume triggers changes in the roles
and structures that seek to serve them.
     As consumers, clients, patients, and students change so do those who
serve them. Marketers begin focusing on consumers' needs and invite consumers
to help envision and develop new products.  Service providers begin planning
with, rather than for, their clients. Agency administrators invite consumers
to participate in advisory board meetings. Professionals begin making cross
referrals to self-help groups and vice versa. People with disabilities begin
directing their own independent living centers.
     Organizations change structures as their consumers and employees become
better informed and more independent.  They decentralize. They permit
entrepreneurs to coexist within their organizations. They structure
employee-led quality circles and problem-solving sessions. They seek
interorganizational alliances, partnerships, and collaborative efforts. Their
leaders seek ways to renew the organization rather than merely
institutionalize innovations.

Changes in knowledge production and use:
     The research community is making shifts too. Social scientists are
accepting as sound research a wider range of research methodology as well as
the importance of interdisciplinary research, multiskills research, and
participatory research.  They are recognizing the need for creativity and
flexibility in research methods to better address the complex issues facing
individuals, institutions, communities, and countries.
     More and more they are beginning to recognize the importance of
involving the user in the research process. Using participatory or
co-operative research methods, some researchers turn subjects into
co-researchers involving them integrally in the entire research process:
needs assessment, research questions, research design, research conduct, data
analysis, interpretation of findings, and use. Funding sources involve
potential users on peer review panels for research proposals and research
scientists invite them to serve on advisory committees for their research
projects.  Such integrative efforts could, in time, lead to removing some of
the most significant barriers associated with past research utilization
efforts.

Barriers to research utilization:
     One of the major barriers to research utilization cited frequently in
the multidisciplinary literature is the two communities of researchers and of
users. The users generally referred to are practitioners or policymakers.
These communities with their differing languages, philosophies, theories,
goals, and practices were seen as being alien environments.  As alien
environments, they require varied forms of linkages between them.  Those
linkages range from change agents to executive summaries, from information
exchange programs to computerized information retrieval systems, from
research reviews to consensus panels. The more users become actively involved
in the total knowledge cycle (production to use to production, etc.) the
better they will understand the researchers' community and vice versa. Over
time the alien status could significantly lessen and one day even disappear.
     In the rehabilitation field, people with disabilities who are recipients
or former recipients of services have seldom been involved in all phases of
the knowledge cycle.  At a time when equal participation in education,
employment, transportation, and so forth has been at the forefront of civil
rights for Americans with disabilities that same right has not been
significantly applied to knowledge production and use. Consumer movements
have shown that active client participation is a factor in an effective
rehabilitation system.  If research is the framework for active participation
in rehabilitation, then in many respects failure to acknowledge this right in
the research arena serves as a vehicle for disempowerment.

A possible solution to the barriers:
     The prosumer approach offers a solution to these barriers.  The prosumer
approach is a mind-set, a way of thinking about roles and relationships in
the rehabilitation field in order to improve the quality of life of people
with disabilities. The prosumer mind-set acknowledges the interdependency,
viability, integrity, and worth of all stakeholders in the rehabilitation
field.  It acknowledges the abilities of people with disabilities; it affirms
their right to self-determination and to equal participation in every
government endeavor that affects their lives.  That includes equal
participation in their own rehabilitation process and equal opportunities to
participate in the production and use of disability and rehabilitation
knowledge.
     The prosumer approach also acknowledges the importance of the
practitioner in helping to develop research results relevant to service
delivery needs.  With guidance from researchers skilled in research design
and the wide range of methodologies and with administrative encouragement,
practitioners could contribute significantly to the body of knowledge in the
rehabilitation field as well as help advocate for, and communicate needs of,
people with disabilities who have difficulties doing so for themselves.
     Like problem-solving models of research utilization and consumer-driven
marketing, the prosumer approach emphasizes the importance of being
responsive to the needs of the ultimate consumer, people with disabilities.
Like the participatory research and co-operative research methodologies, the
prosumer concept is characterized by shared responsibility and shared power
among all stakeholders.  Not all stake-holders will choose to participate;
not all have the capabilities of participating at the same levels as others.
However, they have the right to have their integrity and viability recognized
as an important component to all phases of the knowledge cycle.
     The prosumer concept is coined from the terms consumer and producer
(Toffler, 1980:27 & 54).  Consumers of research may be policymakers,
practitioners, or people with disabilities, the ultimate consumers.
Producers, in the traditional research utilization framework, have meant
research scientists.  In the prosumer approach for a given period of time,
consumers become producers or they help produce; producers from time to time
also consume. Neither gives up their full time roles of consumer or producer
but at times they work so interdependently it is as if they were one.
     The prosumer approach, like the participatory research method, is a
challenge to the research community.  It is a challenge to share power and
responsibility. However, doing so can lead to an enriched role as a
rehabilitation research scientist.  It involves helping to educate others
about the process of research and the safeguards that maximize the validity
and utility of the studies.  It means facilitating the process of research
and research utilization.  It means sharing the power and prestige with
individuals who at one time were subjects but now are fellow participants in
discovering answers to disability and rehabilitation questions.

This study:
     After studying the multidisciplinary state of the art in knowledge
utilization, this author has concluded that the prosumer approach can best
address the major barrier in knowledge utilization and empower consumers.
This conclusion came only after studying not only factors, strategies, and
models in research utilization but also disability and quality of life
issues.  The conceptualization also evolved from exploring the history of
knowledge utilization efforts in fields such as sociology, anthropology,
psychology, and communications as well as in the rehabilitation field.
     The eight chapters that follow allow the reader to discover the
rationale as the author did.  Chapter 1 sets the framework for applying
knowledge utilization efforts to improve the quality of life of people with
disabilities.  The author juxtaposes disability constructs and quality of
life parameters against the potential impact of knowledge utilization
efforts. Chapter 2 overviews the history of scientific knowledge production
and utilization.  It identifies issues facing research utilization
specialists today.  Chapter 3 describes utilization practices in the federal
rehabilitation and education programs: their strengths and weaknesses.
Chapters 4, 5, and 6 provide updates on studies of factors, strategies, and
models in knowledge utilization. Chapter 7 details the changing paradigms and
trends summarized in this introduction.  Chapter 8 describes the components
of the proposed prosumer approach and how the National Institute on
Disability and Rehabilitation Research could lead in the implementation of
such an approach to knowledge production and use.

Other key terms:
     The definitions of key terms used in this paper in addition to prosumer
are defined next:
     Knowledge includes "(1) facts, truths, or principles often associated
with (but not limited to) an applied subject or branch of learning or
professional practice; (2) information or understanding based on validated,
broadly convergent experience; (3) reliably identified exemplary practice,
including unusual know-how; (4) an item of information that a person
certifies as valid by applying one or more criteria, or tests; and (5) the
findings of validated research.  The knowledge may take the form of an idea,
a product, a process or procedure, or a program of action" (Glaser, Abelson,
& Garrison, 1983:2).
     Dissemination is the wide distribution of information or knowledge by
any of a variety of ways to potential users or beneficiaries.
     Diffusion is the "process by which an innovation is communicated through
certain channels over time among the members of a social system" (Rogers,
1983:34).
     Technology transfer is "the conveyance or shift of the tools,
techniques, procedures, and/or the legal titles thereto used to accomplish
some desired human purpose" (Reisman, 1989:31).
     Utilization or use "in its simplest form refers to the application of
available knowledge or technology by a new user and, in some cases, to a new
use" (Glaser, Abelson, & Garrison, 1983:2).  Varying definitions of these and
other terms can be found in the glossary section of this paper.