APPLIED SCIENCE & ENGINEERING LABORATORIES
duPont Hospital for Children and the University of Delaware
Vol. 2, No. 2 -- Winter/Spring 1997
I welcome the invitation to present my thoughts about one of my favorite topics - the role of the citizen in research. For disability research, the approach to citizen involvement is referred to as Participatory Action Research (PAR). I view the National Institute on Disability and Rehabilitation Research (NIDRR) as an institute in the public interest-especially in the interests of people with disabilities. Therefore the values of the disability user community and the values of science form the basis of the research endeavor. This is quite a challenge!
During my visit to the Rehabilitation Engineering Resource Center (RERC) on Rehabilitation Robotics, I saw users and researchers taking on that challenge. I was fascinated by the data showing varying intensities of input from either the researcher or the user at different stages in the development of a remote-controlled vacuum cleaner. I also noted the psychosocial factors in decision making such as negotiations between individuals with two very different kinds of expertise, expertise based on experience and expertise based on research credentials. This is innovative work which should generate discussion in the larger disability user and research community. It should be valuable to the development of the nascent areas of Disability Studies and Rehabilitation Science. NIDRR is supporting work in the development of both areas.
You should not miss the larger backdrop for your work. PAR has roots in a democratic orientation to technology. When I did my graduate work, the first science, technology and society programs were being launched. They were based on the outrageous assumption (at the time) that ordinary citizens should be involved in decisions about nuclear energy, the environment, eventually genetic engineering and computer science. They were based on the assumption that an individual should not be the unknowing subject of a potentially hurtful research experiment. Landmark studies like Carolyn Merchant's The Death of Nature: Women, Ecology and the Scientific Revolution (1980) argued that one path of the scientific revolution was oppressive to women, minorities, laborers and exploitative of human and environmental resources. Today, of course, people with disabilities would be added to the list.
There is criticism of PAR, and some of it justified. In the tension between the experiential and classic research approaches, research design and methodology have sometime been subordinated to the process and dissemination aspects of PAR. In a PAR meeting sponsored by NIDRR, questions were asked about the effect of the PAR approach on the quality of research, on validity-measurement tools and on other areas. PAR also has implications for the administration of research, including budget. These issues are not trivial and require a dialogue and further study.
The Innovator is a newsletter which is well designed to encourage dialogue on these issues and to help to direct the future needs of the disability and research communities in successfully mining the expertise of users, providers and researchers to create partnerships that work. I am genuinely excited about the opportunities for thought and action which such a dialogue may generate.
-Katherine Seelman, Director, National Institute for Disability and Rehablilitation Research