Challenges in Research and Design for People with Disabilities
By Katherine D. Seelman, Ph.D.
During my term as Director of the National Institute on Disability and Rehabilitation Research (NIDRR), I have seen many examples of renewal in our field. Creativity -- and just plain hard work -- within the international and domestic arenas have brought innovation to policy, to research as well as to services and supports. Disability Studies and Rehabilitation Science, for example, are emerging and we will all be involved in shaping the future of these endeavors. Today I will describe innovation in policy and research in this most recent period of our millennium and challenge you to better our accomplishments as we move so rapidly into the next millennium!
Human Rights
At our own peril do we forget the human rights and civil rights advances that have supported research and development for that minority group characterized by diverse function -- individuals with disabilities, blind individuals and individuals with low vision. The international community, through the United Nations and the NGOs, has been in the forefront of leadership in human rights and technology. In 1975, the United Nations proclaimed the Declaration of the Rights of Disabled Persons. The Declaration may have been the first significant international document to associate human rights with access to technology. And the human rights and technology story continues to unfold. In 1976, at U.S. Congress hearings on research and the handicapped, a representative of the American Federation of the Blind was both prescient and plaintive in his statement. Irving P. Schloss testified to Congress that the nation's new science and technology law had just about everything that is useful except the word disabled. In the United States, civil rights and benefits laws provide support for access to technology. The Americans with Disabilities Act of 1990, like most civil rights laws enacted without a budget, gives technology a major role in implementation of civil rights. Technology is recognized as a key to health, employment, learning and living in the community. But, everyone in this room knows that technology is not an unmitigated blessing.
The Ups and Downs of Technology
Technology, however, can be a two edged sword. For those with visual impairments, the barriers to access go all the way back to what may be the first information revolution, Gutenberg's invention of movable type. This important technological advancement spurred an information revolution, but it also led to significant accessibility problems that are only now being fully addressed. Today's digital revolution is creating new challenges for people with disabilities. Not surprisingly, it is additional technology that enables us to deal with these problems.
An Associated Press story reported that "In a market so tight that many employers are begging for workers, 70 percent of blind Americans who want a job can't find one. 30 percent of those who are working are considered underemployed in relation to their qualifications." As we know, a major contributing factor is the graphical user interface on the computers that have become such an integral part of the workplace. Now we are in the midst of another information revolution brought on by the development of the Internet and the World Wide Web. It is critical that we find ways to ensure that the vision of Tim Berners-Lee is realized. Berners-Lee, the director of the W3C (World Wide Web Consortium) said, "The power of the Web is in its universality. Access by everyone regardless of disability is an essential aspect." For this reason, the National Institute on Disability and Rehabilitation Research (NIDRR) is co-funding, with the National Science Foundation (NSF), a major international project to devise accessibility guidelines for the World Wide Web.
Dr. Norman Coombs, a history professor at The Rochester Institute of Technology who lost his eyesight at the age of nine, illustrates the power of the computer to liberate and empower people with disabilities. Dr. Coombs' Web site includes several interviews that he has given. He notes that "Before I got a computer, I didn't really think about how dependent I was on other people. But I must have been conscious of it on a certain level because there were these sudden emotions when I started doing things on my own." He relates the experience of searching for the citation of his own book in an on-line library catalog. When the speech synthesizer mechanically intoned "Coombs, Norman, Black Experience in America," his first thought was "My God, I'm really an author." This is the experience many of us feel when we first see our names in print. He further describes a sequence of interactions regarding email submission of term papers in one of his classes. "One of the students who volunteered was a deaf girl. I graded their papers and sent them back in about a day, and she asked me a question about my grade and I answered it, and she asked a question about something else and I answered it, and a question about something else and I answered it. And then she said 'I've never talked to a professor without an intermediary before.' " Technology can be liberating and empowering for everyone.
A recent MSNBC story featured Krista Caudill of Delaware. Krista had been deaf and blind since the age of 5. With the help of Professor Rick Foulds, whose research received support from the NSF and NIDRR, Krista uses a Braille keyboard that converts computer text into Braille allowing her to access the Web, use email, and, most importantly, complete her undergraduate degree using the technology commonly found in class and the workplace.
The National Institute on Disability and Rehabilitation Research
NIDRR's statutory charge is to support research to maximize the self-sufficiency of individuals with disabilities of all ages. The NIDRR mission is to support research to maximize the full inclusion and integration into society. To this end, NIDRR provides for research centers, research and demonstration projects, training, and related activities to improve the effectiveness of services authorized under the Rehabilitation Act.
NIDRR and I have placed the highest priority on the development of the NIDRR Long-Range Plan for research to support independent living and aging in place. Like Vision '99 NIDRR's new long-range plan is built around a new paradigm for research and practice. This paradigm maintains that disability must be viewed in terms of the dynamic interaction between individuals and the natural, built, cultural, and social aspects of the environment. For example, research funded by NIDRR is relevant to changes brought through medical advancement, applications of engineering to improve function and to make our environment accessible.
Research in Blindness and Low Vision
This commitment to address the full context of disabling conditions is reflected in NIDRR support for research in the area of blindness and low vision. Research is needed to address conditions related to population change such as macular degeneration and elders. Research is needed to improve visual function for individuals, as well as to find ways to re-engineer our infrastructure to enhance accessibility. This spectrum of efforts is seen in the important area of wayfinding for individuals with visual impairment. There is a need for devices used by individuals to enhance orientation, map reading and mobility. In addition, we need changes in the environment such as the remote infrared signage system developed at Smith-Kettlewell. Similarly, to enhance access to information, it is important to develop systems for use by individuals to access graphical information, as well as standards to ensure the accessibility of computer based information like World Wide Web pages.
In the area of access and function, NIDRR supports a field initiated project to develop a tactile image printer which will enable access to a variety of color graphic material such as computer screens, maps and charts. The WGBH Educational Foundation in Boston has a project to improve the effectiveness of Advanced Television to deliver highquality captioning and description services to people who are deaf, hard of hearing, who are blind, or who have visual impairments. Small business innovative research grants have been awarded to develop tactile graphical user interfaces and a multi-line refreshable Braille surface. Dancing Dots, one of the SBIRS, was featured as part of a demonstration of assistive technology at the White House in January 1999. Dancing dots converts music scores into Braille. I escorted the President and Vice President through the demonstration at the White House. When we arrived at Dancing Dots, Bill McCann and his team at Dancing Dots had programmed the computer. It played "Hail to the Chief" when they arrived!
NIDRR, of course, has research investments in areas that are important to daily living such as employment. A major focus on employment issues is reflected by a Rehabilitation Research and Training Center at Mississippi State University. This Center works to identify barriers to employment and techniques to overcome these barriers, to identify training needs and to deliver training programs. We support a Rehabilitation Engineering Research Center AT Smith Kettlewell in California under the Direction of Dr. John Brabyn, which we will hear more about shortly. Access to Information in Technology is the focus of the RERC at the University of Madison, which Dr. Gregg Vanderheiden will describe.
The International Arena
New initiatives from NIDRR are providing worldwide leadership in the identification and implementation of the new paradigm of social integration. Under the U.S.-- European Union Science and Technology Agreement, we have agreed to explore ways and means for closer collaboration in disability and rehabilitation research. Through the Interagency Committee on Disability Research, we are closely following the development and evaluation of the preliminary draft of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH2). We are in the process of completing the competition for a Disability and Rehabilitation Research Project (DRRP) for the international exchange of information and experts. Two exciting new projects will assist NIDRR grantees and other agencies to disseminate to, and use research results from, the rapidly growing international research audience. The primary goal of the center at the World Institute on Disability is to create a productive international exchange of information and expertise on disability and rehabilitation to connect the disability research and advocacy leadership in ten target countries with their peers in the US. The issues critical to the information exchanges are disability rights and independent living, employment and entrepreneurial activity, access and technology, mass media images, and influence through governance.
The new International Center for Rehabilitation Research Information and Exchange at SUNY- Buffalo will develop and maintain a database of international rehabilitation research, assist in bringing international experts to conferences in the U.S. and will assist rehabilitation conference organizers in other countries to involve U.S. experts, on a cost-sharing basis. Additionally, it will disseminate information to service providers on the cultural perspectives of foreign-born persons in the U.S., especially recent immigrants.
Universal Design
The bottom line is that in the area of blindness and low vision, just as in all categories of conditions that require functional enhancement, our goal is to strive for a world of social integration. We must make Universal Design a watchword not only for the rehabilitation community, but the universal standard for all technology development. Universal Design is a philosophy that embraces diversity in culture, gender and age as well as in function. It is especially incumbent upon those of us who work in the field of disability and rehabilitation to look for ways to "universalize" designs. It has been found over and over again that carefully conceived solutions for individuals with disabilities become useful and utilized by others. This may result in cross-disability applications like recorded books that were originally developed for the blind but have been used more often by individuals with learning disabilities. Some aids for tourists may use way finding. The point is that we must take the new paradigm and universal design into the mainstream by building the awareness and expectations of all consumers for accessibility and optimal function.
We are beginning to see these concepts picked up by industry. A recent article in The New York Times found that universal design concepts are being incorporated into products ranging from kitchen utensils to automobiles. The article notes that "Universal design may be intended to improve products for everyone, but it also effectively disguises boomers, huddled at the center as a marketing target. Using these designs, manufacturers hope to accompany boomers into old age, erasing the seams between stages of life like cream on wrinkles." As we confront the aging of the baby-boomers, it is important to encourage this trend to universal design. We must look for partnerships between the public and private sectors to redirect the national research and development agenda toward the reengineering of our physical and societal infrastructure to achieve the highest level of access and inclusion.
Our challenge for the new millennium is formidable. Within a vision of social integration, we must support research and design for technologies with small markets and technologies with large markets. Human rights and science and technology know no boundaries. The effort will occur in international and domestic arenas, with government and industry in partnership. However, the research and design interests of blind, low vision and other people who are functionally diverse must be integrated into mainstream science and technology policy. Universal design must be incorporated into the science and technology agenda. Public policy must support incentives for the private sector to commercialize and researchers to innovate. Research and development budgets to support older adults living with a disability, so long ignored, must be supported. Surely, we will not be bored as we labor to realize these challenges in the next millennium!
Katherine D. Seelman, Ph.D.
National Institute on Disability and Rehabilitation Research
U.S. Department of Education
600 Independence Ave. NW
Washington, DC 20202-8997, USA
Tel: (202) 205-8134
Fax: (202) 205-8997
Email: kate_seelman@ed.gov