Disability World
A bimonthly web-zine of international disability news and views, Issue no. 7 March-April 2001

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Prof. Kate Seelman Reviews Recent Accomplishments of U.S. National Institute on Disability & Rehabilitation Research

Prof. Kate Seelman, who served as the Director of NIDRR during the Clinton administration, has accepted a post with the University of Pittsburgh, where she will continue her research and teaching in disability and rehabilitation studies. Following is an interview conducted in December 2000 by Kathy Martinez (kathy@wid.org), focusing on Dr. Seelman's assessment of NIDRR's recent work and identifying current challenges.

M. Could you give a brief overview of what NIDRR does?

S. NIDRR generates, disseminates and promotes new knowledge to improve the options available to disabled people.I consider NIDRR a research institute that should support research for independent living and community integration. NIDRR research is focused in areas of health and function, technology for access and function, employment, community integration and independent living and related areas in statistics and the international arena. Emphasis is placed on research that supports living in society.

In order to assure that disabled people, like all people, keep up with innovations in science, medicine, technology and the social sciences, NIDRR carefully balances scientific rigor with consumer relevance. For example, disabled people need to have technology that is affordable, accessible and compatible with fast changing computers so NIDRR supported the development of the accessibility features in the Windows Operating System. The Windows accessibility features are an example of universal product design so that everyone can use the project. NIDRR research has been at the forefront of advancing universal design in the U.S.

From its earliest days, NIDRR has had a history of close collaboration with disability consumers and disability researchers in the United States and abroad. NIDRR was established in 1978 following congressional hearings on rehabilitation science, medicine and engineering. An advisory committee guided the hearings. Lex Frieden, who was instrumental in the development of the Americans with Disabilities Act, was on the advisory committee. Judy Heumann and other consumer leaders from the U.S. and Europe testified. The Congressional report issued after the hearings recommended the establishment of a research institute that has become NIDRR. The disability community in the U.S. is unique in the world for having a research institute to support research for independent living.

When I became Director I was intent on re-invigorating NIDRR to meet the demands of the Americans with Disabilities Act and the New Paradigm of Disability. The ADA sets out a huge research agenda but no research money. The ADA associates equal opportunity and civil rights with accessible, affordable and compatible technology for work, public accommodations, transportation, information technology and the built environment. NIDRR is the disability community's research institute and has a responsibility to meet these research challenges. But, look at NIDRR's budget. When I became Director NIDRR had 31 employees and a $69 million research budget, now it has 38 employees and a research budget oft $100 million. In contrast, the National Institutes of Health has over $18 billion. The disability community must begin paying attention to where research and development dollars go in the U.S.!

M. Did you have a particular framework in which you made decisions for NIDRR?

K. I was intent on bringing NIDRR's programs more in sync with the New Paradigm of Disability.While the old paradigm of disability tended to reduce the study of disability to conditions and impairments, the new paradigm is a social, international and integrative paradigm. Thus, disciplines might re-focus so that engineering, architecture and design would support courses in universal design. Medicine and health would support courses in health maintenance, wellness, and prevention of secondary conditions and exercise. Psychology needed to incorporate the notion of the disability community and peer groups into its interventions and expand beyond treatment to other areas of psychology such as industrial psychology and the workplace. The field needed to expand to incorporate disciplines such as business, political science, statistics, the humanities and journalism. These professions need to do an active recruitment of disabled people. Disability Studies offers an important perspective for these disciplines.

NIDRR issued a Long Range Plan designed within the framework of the New Paradigm-the first Long Range Plan since 1981 I might add. The Long Range Plan has generated interested from rehabilitation and disability researchers and consumers from all over the world. The NIDRR Long Range Plan recognizes that Rehabilitation Science and Disability Studies must move forward and that the Disability Studies perspective should inform science, health, medicine, psychology and other disciplines. NIDRR has been insistent in arguing that both experience and scientifically based knowledge can inform the research process. Now, even NIH is considering how consumers can be more involved in its work! Disabled consumers and researchers are involved in NIDRR's planning, peer reviews and program reviews. NIDRR has many disabled employees and they are well trained in Rehab Science and Disability Studies.

M. As Director of NIDRR, you have supported growth in areas that I believe will have a lasting impact on the international arena. Those areas include technology, disability studies, women, and the meeting of minds between the rehab/science and the advocacy community.

S. I'll try to address each, but with emphasis on technology. We live in the age of technology.The recent election drives home the importance of research on technology for the world's disabled people in order to express the privileges of full citizenship-the ultimate goal of all our work. One of NIDRR's engineering centers has developed an accessible voting machine; another is analyzing ballots according to universal design criteria and still another is doing surveys of voting behavior among disabled people.

Recently, I did an international lectureship at the University of Maastricht in Holland and presentations in Sweden and Italy. I shared these examples of how research can help to drive independent living and community integration. At each presentation a respondent from the European disability community applauded these research initiatives.

NIDRR has been very involved with international diplomatic activities throughout the world. I was on the first delegation for the U.S. - European Union Science and Technology Agreement and managed to get our interests onto the agenda of the working group. We have been working with the Disability and Aging Unit of the European Union to further research cooperation and we support the Web Accessibility Initiative.

In all cases, we have introduced the sometime novel idea that disabled people should have a place at the science and technology decision-making table.

Because I have been very hard of hearing most of my life, I have appreciated the difficulties in using the television and the telephone, I have been adamant about launching an Information Age that is accessible. One of the many fine achievements of the Clinton Administration is the Web Accessibility Initiative (WAI) within the World Wide Web Consortium (W3C) that has responsibility for rolling out new generations of the web. The NIDRR-supported WAI, launched in 1997 with a disabled person at the helm, guides the development of international industry-sponsored guidelines for accessible webpages. The WAI has issued guidelines that are being used by corporations throughout the world.

I came into office deeply concerned about the shortened period of in-house rehabilitation available to people with severe spinal cord injury and other conditions. As a consequence, NIDRR established the first telerehabilitation engineering research center in the U.S. and perhaps, in the world. Remote delivery of services and supports will afford the possibility of access to treatment and communications for people who otherwise might die because they do not have the benefits of modern medical interventions and follow up and the benefits of communications with peers. NIDRR continues to be involved with spinal cord injury and technology work in India and supported the establishment of the first major spinal cord injury center in the Indian-Bangladesh-Pakistan region. Until lately, Indians with paraplegia died because they did not have access to modern rehabilitation medicine.

It's important for the U.S. community to share the benefits of its research with a world in which most disabled people live, not in the U.S., in Europe, but in the Third World. I must say that that has been a challenge for NIDRR because we don't have much money and the U.S. is a very inward-looking country that doesn't have great enthusiasm for international projects.

As we hear on the news, for example, people in Southeast Asia, Central America, parts of Africa and other regions have lost their hands and feet and eyesight because of landmines. NIDRR established a Rehabilitation Engineering Research Center on Landmines within an economic development model a few years ago. We also established a professional exchange center at the State University of New York at Buffalo.

We support international activities at the World Institute on Disability, The Ideas for the New Millennium (disabilityworld.org) and other WID projects have made enormous contributions in information exchange and bringing disabled people together for empowerment, advocacy and community integration. We supported the International Leadership Conference for Disabled Women that WID helped to organize, and it lives on today as disabled women throughout the world who were there with us in Washington, now do their own regional and local organizing. Violence and abuse are very important issues for disabled people, in particular, women and children. NIDRR has supported many projects in these areas as well in support of parenting, relationships and other social activities.

I come from the disability community. I've served on the Boards of the Society for Disability Studies, Adaptive Environment, Self-Help for Hard of Hearing and the Whitman Walker Clinic for people with AIDS. From personal as well as community experience, I know that the disability perspective must be brought to bear on scholarly work. Therefore, I put together a disability studies committee during my first year at NIDRR, anticipating that my dear friend and colleague Irv Zola would help lead that activity. He died but the activity moved on. The disability studies committee recommended that a conference be held and a book developed. This year, NIDRR supported the conference, Disability Studies, A Global Perspective. SAGE Publications will publish The Disability Studies Handbook early in 2001. The Handbook, developed under the guidance of an international board and authored by internationally known writers, is expected to set the standard for the field. I hope that this work will help bridge scholarship and advocacy.

During my work with of the Society for Disability Studies and later with NIDRR, I noted the cultural chasm between researchers and consumers. Early in my work at NIDRR, in a moment marked by both humor and frustration I observed: "Researchers work in geologic time and consumers in nanoseconds!" Consumers and researchers have begun to reach a better understanding. There will always be tension because each must maintain the integrity of its own culture and practices.

NIDRR has been re-configured to assure that the delicate balance between scientific rigor and consumer relevance is maintained. Consumers constantly tell me that that their technology and medical interventions are not keeping up with the cutting edge. To insure safe and reliable products and interventions that will provide for maximum health and societal access, NIDRR must follow scientific practices. The advocacy community should learn something about these practices.

To insure that products and interventions are relevant to the needs of disabled people, NIDRR must involve consumers. The scientific community should learn more about the experience of consumers. NIDRR has undertaken to involve consumers using two strategies: a) integrate disabled people in the research process using participatory action research (PAR) and other strategies b) support disabled people's entry into science, medicine, engineering, technology and related fields.

The traditional research process usually includes only scientists and has produced extraordinary innovation that should be made available to disabled people. The less traditional research process can include both scientists and consumers. PAR includes a mix of scientists and consumers. For example, in NIDRR's Robotic's Consumer Engineering Lab, researchers and engineers are working together to solve the problem of a remotely controlled vacuum cleaner for use by people with quadriplegia. During the recent NIDRR-sponsored Global Perspectives on Disability Studies conference, a European disability advocate was astonished that most of the researchers presenting were disabled. The U.S., mainly through NIDRR's support and the benefits of Individuals with Disabilities Education Act (IDEA), has developed a cadre of disabled physicians, engineers, social scientists and other professionals and knowledgeable consumers.

M. Do you think NIDRR is a leader in the U.S. government agencies to promote the social paradigm of disability and accessibility?

S. Yes, NIDRR is a leader in the U.S. government,expressing its leadership mainly through Congressional testimony, meetings and briefings with science and service agencies, information dissemination, technical assistance and coordination. Our staff has been instrumental in developing the regulations for a number of key pieces of legislation such as Section 508 of the Rehabilitation Act. We were important players in support of funds to set up an assistive technology demonstration center for all government agencies.

In my capacity as chair of the Interagency Committee on Disability Research, I have helped to coordinate efforts to adopt accessibility standards and also efforts to transfer advanced circuitry, batteries, sensors and the like from the federal labs to our rehab engineering research labs so that disabled people have the advantage of innovation. NIDRR set up a technology exhibits in the Grand Foyer of the White House and in the Vice President's residence highlighting accessible products manufactured by large and small business. These high profile events have generated countless inquiries about accessibility at school, in the workplace and in the community.

Congressional testimony has also proved to be a useful vehicle in mobilizing the government's scientific establishment to incorporate the interests of disabled people in their research and development activities. As a result, many more agencies understand that the environment can be disabling or enabling depending on their own support of accessible workplaces. NIDRR has also been involved in an uphill effort to help more disabled people pursue science, engineering and technology careers. I was the only disabled person on the congressionally mandated committee for the Commission on Advancement of Women and Minorities in Science, Engineering and Technology. Thanks to superb NIDRR staff work, we were able to bring our message across to the Commission, i.e., that disabled students were faced with problems of inaccessibility in labs, workplaces as well as affordability problems.

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