Disability Studies and Electronic Networking

Ellen Liberti Blasiotti, John D Westbrook, Iwao Kobayashi. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.

Electronic networking has been extremely useful to the field of disability studies. This field has been aided by the exchange of views among scholars internationally. Also, many databases and Web sites provide a wealth of resources for scholars to use in conducting research activities and for people with disabilities to use in daily living. This chapter argues that electronic networking will continue to serve a vital role for disability studies in the future, refining and enhancing communication, discussion, and debate, as well as forming virtual communities of disability researchers who share knowledge, techniques, and even research subjects through the Internet and World Wide Web. The Internet and World Wide Web have been instrumental in forming new global communities, unfettered by political and social boundaries. The Internet has empowered people with disabilities, who look and act no differently than any other “surfers.” These computer-based modalities serve to inform research and to consume research results as never before. The effects of their political empowerment have already been felt, as has their usefulness as an electronic market for services, products, and information. However, while electronic information networking is rapidly changing and offers new opportunities, the extent to which people with disabilities will “automatically” benefit is unclear. Sensitivity to the impact of new technologies is important in understanding the growing digital divide. The opportunities afforded are countered by potential problems and must be carefully studied.

Burgeoning Electronic Information

Like the public airwaves, cyberspace is a public medium that offers new communication and information opportunities. For those with access to a computer and online services, electronic communications, such as electronic mail (e-mail), listservs, chat rooms, discussion forums, and World Wide Web sites, are laterally connecting growing numbers of us to one another without involving intermediary institutions or individuals. The outlook for the future is even more intriguing. Devices will be wireless and handheld. The Internet will be ubiquitous.

Electronic communication offers the chance for rapid, free personal expression. Many complain that the “Information Superhighway” is too crowded and that the wealth of available information is often overwhelming. Today, most electronic communication technologies require almost all users to “filter” or sort through information received to determine what to process, consider, and possibly use. To an increasing degree, listservs and other group communication functions are being used to limit messages or facilitate this filtering process. Portals to targeted information “type https” have significantly increased in numbers and use. Portals to disability-related information and organizations are growing in number and are easily located through common public search engines.

Information for People with Disabilities

Researchers and government agencies that sponsor programs for people with disabilities have taken great pride in making available online a wealth of information for people with disabilities. The National Rehabilitation Information Center (NARIC), sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services, has provided a disability research collection since 1978. Over the years, consumers overtook researchers as primary users of the research information. In addition, in response to an increasingly powerful disability community, NIDRR decided that NARIC should make its abstracts of collected research be available online for searching (http://www.naric.com).

Even more directly, members of the disability consumer movement in the United States demanded the opportunity to search for information on assistive technology provided by ABLEDATA (also sponsored by NIDRR). They wanted to see the range of devices available and to determine for themselves what would be best for them, rather than to be “fed” by information brokers. Like the NARIC experience, collections of consumer-directed information are fully searchable on the World Wide Web (http://www.abledata.com/index.htm). The site is constantly being redesigned to be “consumer friendly.” There has been a shift in information handling from the approach of a traditional librarian to that of a customer-directed approach. In addition to information about equipment and manufacturers in the United States, ABLEDATA has provided a wealth of links to Web sites in Europe, Africa, Australia, North America, and Asia.

Principally, because of electronic networking, ABLEDATA has served to foster a similar Web site in Japan—SenSui. Contacts in the 1980s with ABLEDATA by a student with a disability in Japan inspired him to build a similar site for consumers in his own country. Access to the “Web” in Japan had been limited to researchers who belonged to research institutes or universities. Information for consumers was almost nonexistent. All of the disability resources for consumers were available through listservs, net news, and FTP resources from the United States and European countries. To construct a system of this type with information about Japanese equipment and manufacturers, Dr. Iwao Kobayashi constructed SenSui: Information Resources for People with Disabilities in Japan and has been managing it since January 1995 (http://www.sd.soft.iwate-pu.ac.jp/sensui).

Similar to most consumer-directed Web sites, SenSui provides information, free software to improve accessibility, and links to other disability-related sites throughout the world on important disability-related topics. It provides online consultation services and documentation from important meetings. The pairing of SenSui with ABLEDATA has provided many opportunities for cross-cultural communication. Kobayashi has continued to write and present papers with his counterparts from ABLEDATA, and this electronic linkage has served to form the basis for joint presentations at international meetings in Hawaii, Greece, and Germany.

Sean Lindsay (2000), in a recent editorial in the Disability Times, characterized this type of activity as follows:

Until recently, the disability community online was primarily served by dozens of small, noble, but hopelessly under-funded services, most of which spun out of existing service providers or efforts of passionate individuals…. Some of these services were moderately successful in their areas of expertise, but they lacked the cash necessary to explore some of the greater possibilities of the Internet.

This has now changed. Recently, a new phenomenon—well-capitalized megasites (or portals) for the disability community—have been launched with much fanfare. Some examples are the following:

We Media (http://www.wemedia.com)
Half the Planet (http://www.halftheplanet.com)
CanDo (http://www.cando.com)
CanOnline (http://www.CanOnline.com)

These sites come with the financing to mount complex, inclusive information sites, with services such as listings of accessible real estate, travel opportunities, disability news, research briefs, and other offerings in one “comprehensive” package. The hope is that by focusing on a disability consumer niche market, they can be successful commercially. This seems to be quite appealing at the present time, and many “names” in the disability movement are directors or affiliates of these sites. The subtle appeal of this is that it appears to offer a legitimization of the disability community as a commercial and political powerhouse. This is in contrast with past years when, for example, the apparent lack of a commercial base for devices designed by rehabilitation engineering centers consigned them to the category of “orphan technologies.”

We Media describes itself as a “unique online community of e-commerce offering the disabled community more than $1 trillion in purchasing power—greater choice and freedom when purchasing goods and services.” It has drawn together many services, which are, in fact, available to anyone on the Web. It gathers special-interest information and offers not-for-profit organization members assistance in developing and serving free Web sites, e-mail, chat rooms, and other online services. Half the Planet offers articles about new technology, political activity, housing and jobs for disabled people, and other services and information. For these and similar sites, “free” services and information are mixed with commercial messages and links to particular vendors.

According to Lindsay (2000), in 1998, all of electronic journalism was seized with the “portal wars” of such companies as Yahoo!, Excite, and others. In 1999, many health portals, such as On Health and WebMD, were similarly battling for users. They competed with the Mayo Clinic and C. Everett Koop’s Web sites. More business-based sites were Planet Rx and Drugstore. com, which sold products. Some of the underfunded ones, such as Koop’s, appear at present to be going under. Lindsay cites some patterns of use:

Once people invest time in learning to use one Web site, they are less likely to try another.
People only access health information when they need it.
People are not confident about divulging medical information or about paying for health and medical services online.
The more important the purchase, the less likely it will be made over the Internet.
It is not easy to “monetize” an audience that is drawn by free information.

Lindsay (2000) believes that the two principles most important to being economically successful are content and community. The idea is to keep them “coming back for news, articles, and community discussions,” and later they will come back to buy something because they feel they can trust the site. It will be interesting to watch these sites in the future.

Information for Researchers, Students, and Professionals

Researchers and disability professionals do not seem to be caught up in these commercial ventures. Although they look at the commercial sites, there is a plethora of other places for them to enter the electronic networks to find sought-after information. More focused sites attempt to address the information needs of particular communities of interests. Some are organized and sponsored by specific disability organizations, such as The Arc (http://www.thearc.org), or professional groups, such as the American Occupational Therapy Association (AOTA) (http://www.aota.org). Other sites address individual issues such as “community-based rehabilitation” or “disability statistics.” Counties and cities, such as London, have Web pages that provide information on disability for those living or visiting within a specific geographical boundary.

There is a worldwide community of those interested in disability studies. Many are connected only by this medium, rather than by face-to-face contact. Disability researchers in the United States and those in Great Britain, for example, participate regularly in electronic discourses about their research. Preeminent as one of the world’s leading disability studies centers, the University of Leeds (United Kingdom) provides “mailbase.” This electronic information program of the Disability Research Unit in the School of Sociology and Social Policy at the University of Leeds (http://www.mailbase.ac.uk) is one of the most active discussion channels for disability research.

Because disability studies is interdisciplinary by nature, the dialogue has been enriched by collaborators from many countries and fields such as the humanities, medicine, law, architecture, rehabilitation, political science, sociology, and anthropology. While in earlier days, these discussions might have been among participants gathered at a pub after an international conference, today, this challenging and testing of ideas often take place over the “Information Superhighway.” Various “factions” of disability studies researchers have chosen to make resources available to particular interest groups. For example, professors in the humanities offer curricula and discussions online (http://www.georgetown.edu/crossroads/interests/ds-hum/index.html).

In addition to the academics who participate in these online discussions, people with disabilities often provide their experiential testimony, facilitating the formulation of research questions. The Canadian Centre on Disability Studies provides the “Disability Studies Web Ring,” which helps to engage researchers and students in intellectual discourse. The Society for Disability Studies (SDS) is committed to developing theoretical and practical knowledge about disability and promoting the full and equal participation of persons with disabilities in society. The Global Applied Disability Research and Information Network (GLADNET) brings together research centers, universities, enterprises, government departments, trade unions, and organizations representing disabled people—all committed to the common goal of advancing competitive employment and training opportunities for persons with disabilities.

All of these sites attempt to filter information to save time and effort. There are also more traditional printed informational compendia and guides available. One such example by Julia Stock and Robert Drake (2000) is Data Sources for Social Researchers, which includes printed sources, CD-ROM databases, and keysocial science Web sites worldwide. More than 200 references to key sources of primary and secondary data are listed. Special sections on the European Union, United States, United Kingdom, and other major European countries, as well as subject sections on anthropology, sociology, social work, and social policy, are included. Intended for researchers and academics, the sources in the guide, prepared by social policy specialists, provide students and researchers with useful starting points in their search for secondary sources and data. The Internet sources chosen are considered by the authors to be stable and valid.

Looking Back, Looking Forward

If the fruit of disability studies and other disability research is to be ensured a fully credible and lasting place in academia, it is important for disability studies researchers to become good disseminators. While many think that just making information “available” is enough, there is a great difference between distribution and dissemination or utilization of information. Changes in information dissemination in the past decade have accelerated the process at a rate that dwarfs 5,000 years of human history.

Modern information dissemination began when the oral storytelling tradition converted to the written word, which was, in fact, the “original independent data-transfer medium” (Rojas 2000). This allowed knowledge to progress beyond what could be remembered by the human mind at any one time. Most accounts credit the invention of written language to Sumeria around 3200 B.C. The separation of language from speech by writing allowed knowledge to be documented and transmitted, even if its originator had died or was remote.

The first writers toted clay tablets with their writings on them, and then wax tablets became prominent and remained popular until the eleventh century (even after the invention of papyrus paper 2400 B.C.). However, papyrus in the form of scrolls enhanced the collection and transfer of information. The Egyptians spread knowledge and their rule through this medium. Literacy, however, was still restricted because of the fragility of the scrolls. Also, this medium was restrictive of lengthy discourse and voluminous data. The development of codes helped condense information to a more manageable form.

By the fourth century, it was recognized that the “epics, religious teachings, histories, philosophical musings and legal codes,” which had been in the form of scrolls, could not be “easily accessed or transported efficiently in codex forms” (Rojas 2000:274). Paper, which had been invented in China in the first century B.C., made its appearance in Europe in the Middle Ages. It replaced the more delicate and expensive parchment and vellum. Coupled with this was, of course, the invention of movable type by Johannes Gutenberg in the fifteenth century, which made the book available to more than the elite classes. According to Professor Gary Holland of the University of California at Berkeley,

Within the first 50 years after the development of printing, approximately 25,000 titles were published. Even if the print runs were just 200 or 500 books, the number of books that existed in Europe was mind-boggling compared with just a few years before. (Rojas 2000:274)

The Enlightenment period proceeded full bore in Europe. The next five and a half centuries further increased the acceleration of information, and, with the invention of the telegraph by Samuel Morse in 1844, “information could move as quickly as the fastest human could travel” (Rojas 2000:277).

Of course, even with telephones, television, and radio, books remained the key to knowledge dissemination. They helped to “archive and transport knowledge” (Rojas 2000:277). The computer was the next vehicle. However, it took 10 or more years for computers to be both powerful and portable enough. The Internet and “networked intelligence” have now allowed the storage and instant communication of more knowledge than can be held in any single computer, not to mention any single library. This type of knowledge is soon to be available in one’s hand.

Paul Edwards, an associate professor at the University of Michigan’s School of Information, speculates that “once handheld devices with high-speed Internet connections become commonplace, the amount of information that can be held in one’s hand will soon be nearly infinite, and we will likely see a sharp decrease in the value placed on memory and history.” He states, “Children in five years will ask why they should bother to learn facts and dates, when those can be accessed from an Internet-connected, handheld computer, anywhere instantaneously” (Edwards 2000:224).

Bandwidth is the next crucial medium for knowledge exchange. “Broadband wireless communication is expected to eclipse demand for cable modems and DSL, with 26 per cent growth this year, according to internal numbers for Sprint’s Broadband Wireless Group” (Edwards 2000:226). Europe has led the United States in the development and use of portable information devices.

The development of “standards,” such as Bluetooth (named after a Danish king in the tenth century who had poor orthodontia), will allow wireless devices to provide seamless communications, whether one is in an office or a residence. Connectivity will be constant (Edwards 2000:226).

Electronic books should replace print revisions, according to Martin Eberhard, the erudite founder of Nuvo Media. His opinion is “that by 2005 people will be much more comfortable carrying an electronic book than a dog-eared paperback.” Companies will also change the business from such media enterprises as broadcasting to the “copyright, content and delivery business” (Eberhard 2000:234).

With all of the “noise” generated by the myriad of information sources and techniques available electronically, disability studies research disseminators must ensure that their information “survives the cut” of filtering processes. This will require effective information disseminators, among other things, to “tailor” the content of messages to the needs of specific, identifiable users. Despite the powerful flexibility of modern-day electronic communication technologies, too many Web sites encourage only passive information gathering, without constructing information for learning or developing messages for particular user audiences and known informational needs. While plural uses of the Internet are good, developing an “online virtual community” requires a focused message with a known audience of intended users.

Distribution or Dissemination?

The principles of effective and efficient dissemination practice must be more widely understood and applied in the disability community. Ironically, the advent of the electronic Information Superhighway presents both opportunities and barriers to effective information dissemination and utilization by people with disabilities and many others. New electronic information technologies promote a clearer common understanding of the differences between dissemination and simple distribution. Distribution refers to the act of moving information from one point to another, while dissemination implies a process that has utilization as its intended outcome. While the differences may seem subtle on the surface, their accomplishment is remarkably difficult.

There have been significant differences in the dissemination of research findings and outcomes generated by electronic networking. Increasingly, the outcomes of research are being widely shared electronically, often at a much faster pace than ever before in history. Traditionally, the dissemination process for findings required years of documentation, the presentation of conference papers, and the preparation and publication of peer-reviewed journal articles. This information trajectory is now often short-circuited with the direct, electronic publication on the World Wide Web of tentative, preliminary, or final research results.

The task of dissemination is to bridge the gap between research and practice. Part of the challenge is that dissemination has fallen prey to the very dilemma it seeks to address. That is, research on dissemination, or knowledge utilization, as it is frequently called, has yielded a wealth of information about what does and does not work. However, most of those understandings have not moved from the academic research community to the “practice” community. As a result, most dissemination practices are still based on a mechanistic belief that the only task is to “get the word out” or simply distribute the information.

Klein and Gwaltney (1991) cite the notion common in the dissemination literature of the 1960s and 1970s that was touted by the federally constituted Dissemination Analysis Group in 1977. This work identified four functions or types of dissemination:

Spread, which is defined as the one-way diffusion or distribution of information;
Choice, a process that actively helps users seek and acquire alternative sources of information and learn about their options;
Exchange, which involves interactions between people and the multidirectional flow of information; and
Implementation, which includes technical assistance, training, or interpersonal activities designed to increase the use of knowledge or R&D or to change attitudes or behavior or organizations or individuals.

Clearly, knowledge is not an inert object to be “moved” and “received” but rather a fluid set of understandings shaped both by those who originate it and by those who use it (Louis 1992). Using knowledge is an active learning process. Dissemination research shows that knowledge users shape and filter information according to their prior experience and understandings. Effective electronic information dissemination must recognize this “constructivist” approach in tailoring basic elements in the process of dissemination. The use of knowledge acts on information relating it to existing knowledge, imposing meaning and organization on experience and, frequently, monitoring understanding throughout the process (Hutchinson and Huberman 1993).

Five Basic Elements of Effective Dissemination

In considering the complexities of dissemination through electronic and other channels, it is useful to recognize the following five basic elements that enhance or preclude knowledge utilization. These elements include the following:

The content or message that is selected for dissemination (this includes the knowledge or product and any needed supporting information or materials);
The dissemination source, that is, the agency, organization, or individual responsible for creating the content or conducting the related dissemination activities;
The medium, that is, the ways in which the content is described, “packaged,” and transmitted;
The user, or intended user, of the information to be disseminated; and
The context, or circumstances and conditions, that must be met to access or acquire the information (e.g., cost, materials, or computers to access electronic Web-based information).

Also, to achieve the goal of knowledge use—rather than simple distribution—those involved in the dissemination activity must know about and be responsive to the target audiences for whom their information content is intended. Saying this, it is also important to recognize that “change” or action on information that is disseminated can be a complex consideration. Values are involved in all decisions of this sort.

Involving Users of Electronic Communications

In a study of 34 projects that developed software tools to advance internal productivity in four large U.S.-based electronics firms, Leonard-Barton and Sinha (1990) found that, in addition to the quality and cost of the technology and its initial compatibility with the user environment, two managerial processes were important in explaining different levels and types of successful implementation. The first of these was the degree and type of user involvement in the design and delivery of the system. The second was the degree to which the project participants deliberately altered the technology and also adjusted the user environment in a process of mutual adaptation (Leonard-Barton 1995).

Similar to the current view that a participatory action model leads to better research, effective disability studies disseminators must know and involve their intended user group in a variety of ways as they are shaping communications strategies. Moreover, the ways in which intended users are involved in shaping electronic communication systems (e.g., Web sites), informational systems, retrieval archives, and databases, among others, appear to be related to the overall communication “power” of the integrated set of basic elements of dissemination: user, content, medium, context, and source.

Because user involvement is not a precise term, care must be taken by disseminators in shaping the involvement process. Characteristics of sampling intended users correlate to the resulting quality of a dissemination effort. Some factors are the following:

Selection of users based on their knowledge, experience, or representativeness of the larger intended user group;
Inclusion of differing forms and levels of expertise that may be related to the use of the informational content;
Distribution of users according to geographical, cultural, language, ethnic, economic, and social lifestyle affiliations; and
Desire or willingness of potential users to use new information or to change old patterns of behavior or thinking as a result of new information dissemination.

Too frequently, electronic information disseminators do not consider the “attendant” level of information that may be needed by most intended users, if they are to actually apply or implement the information shared with them. This type of “cold” dissemination, without previous user involvement, is successful only if the new information is completely self-explanatory, requiring only intuitive notions and flexibility in how it may be applied, or if the intended users receiving the new information are already knowledgeable in all areas needed to assess and implement the new information or innovation successfully. This rarely happens.

Effective information disseminators must also be cognizant of the irony of mass communications such as those afforded through electronic technologies such as the Internet. Specifically, some experts recommend that disseminators carefully consider the size of the user audience that they will be able to address effectively (Dentler 1984). Clearly, the greater degree to which electronic dissemination practices conform to a careful matching of the intended user with the desired content, medium, and context through a respected source, the greater the likelihood that the intended user will be able to assess and use the disseminated information. A thoughtful and responsive codevelopment process strengthens the integration of elements critical to successful dissemination practices.

Many are familiar with the adage “information is power.” New electronic communication technologies offer great opportunities for creating equitable access to electronic information. In addition, social attention appears to recognize a need and a benefit to this equity in access in ways that are new and powerful.

To a growing degree, the outcomes realized through research are becoming available through the World Wide Web. For example, in 1995, about 25 percent of the research projects funded by the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research had information available through the Web. At the end of 1999, however, a little more than 80 percent maintained Web sites to share information about their activities and outcomes.

The “Digital Divide”

The increasing prominence of the Internet-based technologies makes it imperative for disability studies researchers and disseminators to address this dynamic new medium. There is growing evidence that Internet usage is affecting all people, including those with disabilities (Zajac 1998). However, it must be noted that while more people are using computers, many persons with disabilities may still lack access to a computer (NCDDR 1997). Also, given the high correlation between disability and poverty (Seelman and Sweeney 1995), many people with disabilities may not be able to afford a home computer and online services.

The National Telecommunications and Information Administration (NTIA) in the U.S. Department of Commerce has compiled data regarding the use of the Internet among the U.S. population and has found significant trends that should be known by those intending to use electronic media for dissemination purposes. Highlights of the NTIA (1999) findings indicate the following:

The “digital divide” for Internet use between those at the highest and lowest educational levels widened by 25 percent from 1997 to 1998.
Of those with college degrees, 61.6 percent now use the Internet, while only 6.6 percent of those with an elementary school education or less use the Internet.
Those with college degrees or higher are 10 times more likely to have Internet access at work as persons with only some high school education.
Almost 60 percent of home Internet users report using it to search for information.
Approximately one-third of Americans reported using the Internet in 1999.
Approximately 8 percent of Americans reported using the Internet primarily through public libraries as their access point.
U.S. households earning incomes more than $75,000 a year are 20 times more likely to have home Internet access than those at the lowest income levels.
Hispanic households in the United States are roughly half as likely to own a computer as white households and nearly 2.5 times less likely to use the Internet.
Hispanic and African Americans in the United States are less likely to have access to the Internet from any location (home, school, work, or library) than whites are from home.
Native Americans access the Internet at a rate of 18.9 percent, which is less than the national average in the United States.
At every income level, households in rural areas in the United States are significantly less likely—sometimes half as likely—to have home Internet access than those in urban or central city areas.

However, there is growing access to computers and to the Internet. Plans have been formulated to allow for computers in every classroom in the United States or for every schoolchild in Japan. Free access to the Internet through public libraries, the presence of WebTV, decreasing costs for portable devices, and wider bandwidth will likely help ameliorate this situation. In the United States, President Clinton announced on April 4,2000, an initiative to provide for 1,000 computer centers and a large volunteer effort to help eliminate the digital divide in the United States. He stated,

I want you to understand that while most people talk about the digital divide—and it is real and it could get worse—I believe that the computer and the Internet give us a chance to move more people out of poverty more quickly than at any time in all of human history.

The U.S. president described a scene from a trip to India where, even in a remote village, the mother of a newborn can go to a public building and print out instructions on caring for her newborn. She could take with her the government-sponsored information with significant visual content, which, in his estimation, would be equal to what she might be given at a hospital of great renown.

It is expected that people in developing countries or rural areas of the United States, where Internet access is not currently widely available, will be helped by the business community. Business is financing the availability of direct service lines (DSL), wider bandwidth, and satellite systems that will carry larger amounts of information at greater speed. Satellite systems operating high above developed areas can also be extended to cover undeveloped areas (Gates 1999).

The “digital divide,” however, is not just between technological “haves” and “have-nots.” Additional concerns must be raised about technical literacy and the ability to use electronic communication and information dissemination capabilities. Modern dissemination strategies must recognize that new digital communication technologies offer powerful opportunities and tools that can radically change the nature of “informed decisions” made by those with access to the World Wide Web.

Use of the Internet as a dissemination medium has moved from 13.5 million adults in the United States in 1995 to more than 58 million or 30 percent of the U.S. adult population in 1998 (Birdsell et al. 1998). An estimated 700 million pages of content are available on the Internet, addressing a great range of topics, including aspects of disability, chronic health conditions, and independent living (Blasiotti 1999; NCDDR 1999; Novak and Hoffman 1998).

Global Readiness

Access and utilization of the Internet’s resources are uneven from the global perspective. The extent to which the Internet offers useful and available information globally depends on an infrastructure and awareness level that, in certain countries, is still developing. For example, the Center for Democracy and Technology (2000) reports its conclusions regarding Internet access in Central and Eastern Europe.

Internet usage was growing throughout the region but remained very low compared to Western Europe. Estimates of users ranged from a high of 500 per 10,000 in Slovenia to less than 1 per 10,000 in Belarus and Moldova. While Russia had at least 185,000 hosts (essentially, domain names ending in ru) as of December 1999, Finland, a country with 1/30th the population, had more than twice that many.
A major barrier to Internet usage in many countries is the poor state of the underlying telecommunications infrastructure. Most people, particularly residential users and nongovernmental organizations (NGOs), currently are dependent on telephone dial-up connections to the Internet. Throughout the Central and Eastern Europe region, teledensity rates are low, service quality is often poor, and there are long waiting lists for installation of new telephone lines.
A second major barrier to Internet usage is the practice of per-minute charges for local calls, which makes connection time prohibitively expensive for many.
In much of Central and Eastern Europe, due to the influence of the European Union (EU), telecommunications policy is focused on privatization and competition. These are necessary but are not sufficient conditions for the expansion of access to both basic telecommunications and Internet services. Much more needs to be done to open up the telecomm and Internet markets to true competition.
Countries seeking to join the EU must commit to universal service. This is an important lever over national governments but so far has not been reflected in concrete definitions of universal service or “affordability.” Under EU directives, the concept of universal service has been extended to Internet access.
Given the rapid technological changes that are afoot and the global boom in Internet development, there is an urgent need for the EU and other international and regional bodies to adopt more effective policies to promote affordable access to noncommercial users.
A range of alternative access technologies, including wireless, fixed wireless, satellite, and cable modem, hold the promise of overcoming landline telephone infrastructure deficiencies.

While the Center for Democracy and Technology (2000) report focuses on the Central and Eastern European region, its findings and conclusions have broader relevance to the growing debate over the digital divide from a global perspective.

Bells, Whistles, and Accessibility

For disseminators of disability studies information, another major “divide” is caused by problems with the physical accessibility of information channels. It is imperative that accessibility be planned and included in the formulation of all products. Alschuler (1998) pointed out that accessibility could mean more than accommodation to a physical disability.

Good accessibility means making full use of content when one or more senses is turned off or turned down. This applies to the tens of millions of people with physical disabilities, but it also applies to others. What renders a person with “normal” vision, hearing, and motor and cognitive abilities “disabled”?

The use of a Lynx browser on a character-based terminal;
The use of a browser in a hands-free, eyes-busy environment, such as a moving vehicle;
Aging—after age 65, approximately 70 percent of the population acquires some form of access-related disability.

If you define disability as a permanent or temporary restriction on the use of sight, sound, color, and motor skills, we are all disabled to some degree. Our degree of “disability” will increase as we age and as Web browsing goes onboard in cars and in the operating rooms and permeates more corners of our daily life.

Most societies appear to be sensitive to the accessibility needs of people with disabilities. While some countries have enacted legislation officially safeguarding rights and privileges for people with disabilities, most societies appear to recognize that frequently, accommodations made for people with disabilities benefit many others in the society as well. These legislative responses to disability will be addressed in this volume.

The power of the World Wide Web to accommodate text, graphics, animation, video, audio, video and audio, and other simultaneous strands has the potential either to facilitate or to complicate Web site accessibility. The use of nontext forms of communication must also be accompanied by alternate formats for communicating the same information, generally to maximally meet the accessibility needs of computer users accessing Web pages with screenreaders or other forms of assistive or adaptive technologies. Web site designers need to be informed about accessibility issues to provide these alternate forms or strands of information.

Advances in software development offer hope that Web site construction may someday be more “automatically” accessible. Today, however, the accessibility of most Web sites rests in the knowledge and sensitivity of Web site designers. Enhancing Web site designers’ awareness and sensitivity in this area can be challenging due to the fact that many have not had formal training to perform such work but have, instead, learned through their own experience. Thus, Web sites of disability-related entities have an additional responsibility to demonstrate in functional ways how Web sites can be maximally accessible to all users, including those with disabilities.

World Wide Web Consortium

Accessibility of the World Wide Web for people with disabilities has been of concern to many in the private and corporate worlds. The World Wide Web Consortium (W3C) was founded to develop common protocols that could be used by Web designers, computer programmers, and Web-based information specialists to promote access to information for all users through the WWW. Some technologists and information specialists recognized that the rapid growth and development of the Information Superhighway afforded the opportunity to open many new possibilities for people with disabilities. Or, through inattention to the needs of people with disabilities and others, the Superhighway can create a rich information treasure that is inaccessible to some.

The W3C was founded in October 1994 at the Massachusetts Institute of Technology’s Laboratory for Computer Sciences. The W3C added a European presence in cooperation with France’s National Institute for Research in Computer Science and Control in April 1995, and in August 1996, Keio University in Japan became the third cohosting institution for the W3C. In 1999, the W3C had approximately 270 commercial and academic members that included computer hardware and software manufacturers and vendors, telecommunications and Internet service provider companies, and a variety of information, corporate, government, and academic entities.

The W3C has led the way to accessibility of the WWW by establishing common specifications that promote concerns and features for accessibility. Sensitive information disseminators using the World Wide Web or related HTML technologies will, at the least, be aware of the recommendations of the W3C. Each entity within the disability community that establishes and maintains a WWW presence, knowingly or unknowingly, serves as a model for Web site accessibility.

Web site accessibility is a construct that changes as new software, hardware, and related technologies become available. In addition, complete accessibility for all potential users of the Internet is at the end of the accessibility continuum. Ultimate, complete, and everlasting Web site accessibility, in other words, does not exist. Web site designers must continue to sensitively consider new technologies and their implications in terms of accessibility.

Cybertalk and Social Change

E-mail and other Internet information technologies can serve as a unique tool for people with disabilities and others to engage directly in advocacy and social change activities. In the area of disability studies, Disabled Peoples’ International, for example, has helped inform the research by bringing the disability experiences of people from many countries into the research equation. What is important is not only its breadth of scope but also its influence. Organizations—large and small—are more “equalized” through these technologies, especially in terms of the promotion of disability policy and related social change issues.

This also holds true for the “recruitment” of people with disabilities in the disability studies research area. Researchers are collaborating across international boundaries to study the sociopolitical status of such persons in various countries. The data and testimony brought to disability studies through electronic participation can add immensely to the richness of the literature. Although only a handful of researchers may be able to spend time abroad in legal research or studying legislation similar to the Americans with Disabilities Act (two NIDRR-sponsored Switzer Fellows have done this), electronic discourse and the use of databases, newspaper articles, and formal archives of various countries can all be accessed with immediacy.

As a “living classroom,” the political activity of disability advocates can not only be gathered on the Internet but can also be observed and documented in this medium. Concerning the vital contribution the Internet has made in promoting civic participation, Steve Case, founder of America Online, commented in October 1998 as follows:

We must use this medium to increase civic participation…. One of the first goals of this effort should be the development of an index of benchmarks—“leading indicators”—if you will that can measure the Internet’s contributions to our social, political, and economic lives.

As a regular information medium, the Internet can shape public attitudes and could be strengthened to more greatly affect policy. It is a method through which new concepts, such as the “new paradigm of disability,” can gain wider acceptance. Although the regular media are constrained by editorial policies and responses to economic influences, such as advertisers or their market niche, the Internet provides for freedom of expression.

Because much of the political work is being done by what we in the United States call “nonprofits” (in other places, they may be NGOs), it may be instructive to pay attention to the December 1998 report, Democracy at Work: Nonprofit Use of Internet Technology for Public Policy Purposes. The OMB Watch contends that

the Internet (and its resulting technologies) has become a tool that considerably equalizes the potential of both large and smaller nonprofits to increase their visibility and engage potential volunteers and supporters. The amount of resources—including funding, staff availability, and time—make a big difference, however, in the tools available for organizations to utilize in their public policy activities. (OMB Watch 1998:37)

As a means for greater political organization and activity, the Internet does not currently seem to be living up to its promise, at least as reported by not-for-profit agencies, which are the organizations likely to be active on behalf of people with disabilities. The C. S. Mott and Surdna Foundations funded a study to analyze how nonprofit organizations use newer information technologies to engage in public policy activities. The findings of the study clearly reflect the state-of-the-art of Internet use among disability-related nonprofits as well as others. The results were issued in 1998 and generally reflected the following Internet use characteristics.

The Internet is not currently widely used as a major policy-shaping tool. Although Web sites of nonprofit organizations have demonstrated enormous growth, the technology, including associated electronic mail capabilities, has not grown into a consistent policy tool. Most nonprofits use the Internet to make documents available that have already been distributed in another—usually print—format.
Far greater numbers of nonprofits have the capability to use the Internet than are currently using it for public policy activities. While thousands of nonprofits engage in public policy activities, few are using the Internet in these activities.
Web site information of nonprofits is not consistently maintained or kept up-to-date.
The Internet is a more inactive, passive form of public policy networking than listservs. Some argue that the Internet and use of Web pages are far too passive to be an effective and powerful advocacy tool.
Nonprofits are currently using only a narrow range of the full panoply of options available as Internet technologies. Listservs, frequently only used as automated distribution systems, were the most common tool used in public policy activities.
Interactivity is not a common characteristic of Internet use by nonprofits engaged in public policy activity. Although robust Internet technologies supporting chat rooms, discussion forums, bulletin boards, and virtual reality exchanges exist today, limited use is made of them.
Establishing a consistent and easily recognizable identity on the Internet is important to support a higher frequency of use and access through search engines.
A significant number of nonprofits do not use the Internet due to knowledge, tool, and skill barriers related to Internet Web site design, development, and maintenance.
Internet Web sites of nonprofits suggest organizational contexts and characteristics to viewers and users of the site. For example, nonprofits reflect conservatism by using high-end Internet tools to coordinate contacts to members of Congress for various public policy issues. Nonprofits appear progressive by emphasizing the use of currently available Internet tools to help grassroots efforts initiate and conduct public policy activities.
Funding assistance to develop and maintain public policy Web sites is difficult to obtain. Most foundations—frequent funders of public policy activities—do not frequently use Internet Web sites and do not frequently fund Internet advocacy activities.

Clearly, the Internet affords many new opportunities to those engaged in public policy debate and activities and could be more aggressively used by the disability studies community to effect change. Schwartz (1996) outlines three major advantages that promote advocacy activity through the medium of the Internet. These include the following:

The ability to very rapidly send complex materials and related information to general and specific audiences,
The opportunity to communicate with large numbers of people simultaneously with limited per-person costs and time allocation, and
The ability to have ongoing and long-term discussions with selected individuals or groups of individuals in specific “threads” or areas.

Changing Terrain of Information Access and Resources

The “almost instant” online publishing of research results can be beneficial in making the information demanded by people with disabilities available sooner in the research continuum. However, the immediacy and lack of standards for judging information internationally lead to the potential for serious problems through the promotion of faulty and even potentially destructive concepts. The Internet and related electronic forms of information exchange are creating new demands and expectations on the part of those seeking information.

This demand is creating some unexpected changes in information resources. For example, in August 1999, the secretary of the U.S. Department of Commerce announced plans to eliminate the National Technical Information Service (NTIS), which had been a major repository for government-sponsored research information. The secretary worked with Congress to close the NTIS as a major source of information while still hoping to preserve public access to scientific and technical reports. After extensive review and analysis, it was determined that the core function of NTIS, providing government information for a fee, was no longer needed in this day of advanced electronic technology. While the agency previously sold government documents in microfiche and paper formats, this became an unprofitable pursuit, as agencies and groups posted their reports on the Internet for free. These changes in the information marketplace have made obsolete the need for some “libraries” or information clearinghouses to continue operation.

Clearly, new technology will result in changes in the information resource terrain. The transition from print to electronic formats will cause some previously “successful” resources to be less than profitable or, perhaps, unnecessary in the age of free information exchange. This may affect government support for disability studies research.

Potential Concerns about the Quality of Information

While electronic information systems, such as the Internet, bring substantial opportunities for rapid information exchange, traditional communication channels also appear “challenged” to keep pace and maintain their standards of quality. For example, early in 1999, Dr. Harold Varmus, director of the National Institutes of Health (NIH), announced a proposed plan to publish new biomedical research results electronically through the Internet, using a new Web site called E-biomed. Varmus argued that the plan would propel research results into the arena for use much more quickly than traditional academic journal pathways. He also proposed that a portion of the information on the Web site would be peer reviewed, while some of it would not be.

Dr. Arnold Relman, editor-in-chief of the New England Journal of Medicine, was vocally opposed to the plan, considering it a risky endeavor. He contended “that immediately publishing official research without accompanying expert commentary and interpretation could lead to mistakes, inaccuracies and misinterpretation.” This is not a new debate for persons in the medical and rehabilitation fields. As pressure has increased for the public release of research information, traditional research information sources have grappled with the choice of speed over traditional peer review procedures. Relman noted that it was more important for new research findings to be “thoroughly reviewed, not hastily published” (San Jose Mercury News, 1999).

Evaluating Web-Based Information

This “instant credibility debate” is new for many fields and could affect disability studies because of the nature of findings and their direct relationship to disability consumers. Disability information disseminators have kept an eye on the medical community in this regard. There have been a number of attempts over the past several years to devise guidelines that help users of Web-based information evaluate medically oriented research available through the Internet. Similar evaluative assistance has been suggested for information related to medical rehabilitation results (Blasiotti 1992).

For example, NIDRR sponsored establishment of the National Center for the Dissemination of Disability Research (NCDDR) (http://www.ncddr.org) in 1995 as a pilot project. In establishing its Web site, the NCDDR jointly constructed a component of the Web site to highlight information produced by the NIDRR-funded Model Spinal Cord Injury Systems (MSCIS) (http://www.ncddr.org/rpp/hf/hfdw/mscis) projects. Working with a representative peer group of the MSCIS dissemination committee, the NCDDR identified information for posting that was deemed “worthy” and ready for wider distribution.

In 1998, the Journal of the American Medical Association included an article titled “Rating Health Information on the Internet: Navigating to Knowledge or Babel?” The authors focused on sites that had been distinguished by awards, citations, or other quality ratings or approvals. The criteria suggested for evaluation of the Web-based health information included the following:

Mentioning information about the academic and professional background of the authors;
Attributions for references and other related sources for information-gathering instrumentation used;
Disclosure, if appropriate, of Web site ownership, sponsorship, advertising, underwriting, commercial funding arrangements, other support, or potential conflicts of interest.

The authors located 47 instruments developed to rate health information Web sites. Only 13 of the instruments included descriptions of the rating criteria. During the six-month period following the initiation of the survey, 9 of the instruments with previously available criteria ceased to make them available. In addition, 3 of the rating instrument developer organizations decided to stop rating health information Web sites. The authors concluded,

Even if desirable, however, the next question is if it is possible to evaluate the information on the Internet. The successful development of instruments to evaluate health information on the Internet is not an easy task. Evaluation of just the content, for instance, presents the same challenges by those evaluating the quality of randomized controlled trials published in paper-based journals, including the lack of a “gold standard” for quality and the controversy around its definition. (“Rating Health Information” 1998:614)

In August 1999, The Washington Post reported that a team of Michigan researchers had reviewed some 400 Web sites for information on a rare form of cancer, Eking sarcoma. The researchers found that 6 percent of the sites contained erroneous information, and many of them contained misleading information. Of the remainder, survival rates cited ranged from 5 to 85 percent, creating concern that individuals using these sources of information might refuse treatment. The leader of the research team, Dr. Sybil Biermann, an orthopedic surgeon, stated,

I think the Internet is a really positive development, but there are perils in the lack of peer review and promulgation of bad information. When patients come in to discuss information with their doctor, I recommended that doctors ask patients if they got their information via the Internet. Thus, the doctors can assess their patients level of misinformation and provide needed guidance and support. (Boodman, 1999:207)

In November 1999, Red Herring reported on the privacy challenge as well as the “judging” question. In an article aptly titled, “Faustian Bargain or Valuable Exchange?” (Oh 1999), this confluence of technical information and consumer interest was discussed. One popular site allows those with cancer to input specific details of their condition and, in return, obtain information specifically related to their case. The Cancer Profiler provides information from peer-reviewed articles from the Journal of the American Medical Association, and it “weighs treatment options.” The site developers consider this a filter for the information, and they also consider that they have a second review by a medical editorial board.

Some of the information concerns the preference for drug over surgery and others. However, as in most commercially backed sites, this one’s primary source of revenue is “fees paid by an undisclosed number of drug developers.” In return for their capitalization of the site, companies can access the aggregated database. Although this site will not have commercial banner ads on its site, it provides its sponsors with market information. Although the site provides what appears to be targeted information, it might also be providing very private information to other sources. One of the reported activities of the site is informing a user in one city that he or she may be a good candidate for a research study in another.

This site has tried to find some ways to ensure the privacy of its users, including applying for a “TrustE Web Seal.” This seal is supposed to signify that the site has met at least minimum standards for the insurance of privacy. However, it is noted that these measures are not “true guarantees.” It remains to be seen if this site, like the commercial sites mentioned earlier, can prove economically successful to retain its partners in the pharmaceutical industry.

Internet 2

Increasing traffic on the Internet has caused growing pains and roadblocks for some attempting to use the Internet for information collection and research. Internet service providers (ISPs) are struggling to offer adequate communications bandwidth while maintaining profitable applications. Problems are occurring, however, due to the continuing exponential growth of the medium over a relatively short period of time.

In response to this and the growing commercialization of the Internet, a plan to develop another version of the Internet was conceived. In early October 1996, 34 research universities convened and agreed to establish the Internet 2 Project. The goal of the Internet 2 Project is to coordinate the activity of the universities and several government and industry partners to develop the next stage of the electronic Internet medium. The Internet 2 Project goals are the following: (1) to establish a leading-edge networking infrastructure for the national research and higher education community, (2) to encourage and support the development of a new generation of applications to fully use the capabilities of the Internet technology, and (3) to improve the reliability and ease of use of the Internet technology for all members of the academic community. The Internet 2 mission is to

facilitate and coordinate the development, deployment, operation, and technology transfer, of advanced, network-based applications and network services to further the United States’ leadership in research and higher education and accelerate the availability of new services and applications on the Internet. (http://www.Internet2.edu)

The Internet 2 Project is expected to evolve over the next three to five years. Beta applications and other trials will surely be a part of the Internet 2 development process. Innovative applications are planned that will enhance collaboration in research linking instruments, data, students, and teachers; development of virtual laboratories that enhance real-time access to remote instruments and supercomputing centers; digital libraries that will contain extensive video and audio collections; and large-scale computation capabilities. Internet 2 advancements promise to revolutionize uses of the Internet technology.

Disability, Electronic Information, and the Future

Without doubt, the way in which disability is perceived and defined in the future will be changing. Today, some authors (see Fujiura 1999; Seelman and Sweeney 1995) are discussing factors in our global society that are contributing to new or emerging disabilities. Factors such as violence, poverty, environmental toxicities, and accidental injuries—to name a few—are contributing to disabilities in increasing numbers. The nature of services and related information that individuals with these types of emerging disabilities may require will be evolving in the twenty-first century and challenging the service delivery and informational systems.

In addition, increased attention is being paid to the environmental factors that contribute to the mobility and integration of people with disabilities into their communities. The way in which physical environments are built and the degree to which these factors constitute “barriers” for some people with disabilities will continue to gather increased scrutiny by consumer groups, policymakers, and service providers.

It also appears clear that the expectations for electronic information systems to inform, provide services, and foster personal and targeted social interactions will continue to increase. Publicly funded informational resources will continue to feel pressure to offer current, timely, and pertinent assistance and access to desired information. Electronic formats for sharing and archiving this information will continue to increase and allow a growing expectation for on-demand comprehensive electronic forms of information and related assistance. This expectation will certainly continue to forge change.

Electronic Learning

The use of electronic media and information resources affords new possibilities in the learning process. Those engaged in disability studies should become familiar with and make use of this tool, which is increasing the “audience” of learners. For people with transportation difficulties engendered by their disability or perhaps their remote setting, distance learning is opening up the world of disability studies to them. This has the potential for great impact on disability studies curriculum development (international scope, accessibility, people with undetermined skill levels, and others). Clearly, as some researchers are finding out, the Internet and attendant information allow learning to occur through a variety of new communication and information-gathering procedures.

Some writers have mused on the changes of the “new learning” over traditional formats such as lecture and memory recitation. In fact, there has been much discussion—much of it on the Internet on the future shape of the “university.” One futurist, Don Tapscott (1998), has described a learning model that is based on discovery rather than instruction:

The new model shifts from teacher-centered to learner-centered education. In the past, education has tended to focus on the teacher, not the student. This is especially true in post-secondary education where the specific interests and background of the teacher strongly influence the content. Much of the activity in the classroom involves the teacher speaking and the student listening. Learner-centered education begins with an evaluation of the abilities, learning style, social context and other important factors about the student that affect learning. It would extensively use software programs which can structure and tailor the learning experience. It would be more active, with students discussing, debating, researching and collaborating on projects. The new university emphasizes learning how to navigate and how to learn and think, rather than absorbing materials, preparing youngsters for lifelong learning. This includes learning how to synthesize, not just analyze. (P. 6)

Certainly, an extensive range of resources are at the disposal of modern-day students. These can be accessed in a timely fashion for a variety of purposes. Combining Internet searches with database resources and materials, along with electronic mail to and from content experts, creates rich information capacities.

Electronic Information Dissemination in the Twenty-First Century

The use of the Internet can be expected to grow exponentially for the foreseeable future. In addition, the availability of information and the number of Web pages available through the Internet will markedly increase.

Futurists have forecast a variety of possibilities for cyber-communication into the twenty-first century. Some of these include the following:

The self-contained personal computer, as we knew it at the end of the twentieth century, will be replaced by “networked intelligence,” and e-commerce will abound. The Internet will be where computing is done, and people will be able to widely share it through WebTV, cheap terminals, and other means of access. Bandwidth will continue to increase and will speed up communications and be readily available in homes through cable services (Harris 1999).
Research will change as a result of the changes in electronic access to information. In the past, scientists—even more than other knowledge workers—have spent the vast majority of their time collecting data and only a small part of their time applying it. Better tools will enable researchers to apply most of their brainpower to the tough problems rather than to data collection and verification.
The Internet will become a hotbed of political activism and a revolutionary organizing tool. It will enable users to discuss coordinated actions and facilitate mobilization while also allowing more people to express their personal views. Technoliteracy connotes the inherent political power of networks (Harris 1998).
The increased use of electronic networks for telemedicine, telerehabilitation, telehealth, and telehome health care will become common tools used to address professional personnel shortages and expand service capacity.

Clearly, electronic information dissemination will significantly contribute to the growth and change of our global society in the twenty-first century. Although the technology and associated information promise to remove some barriers for people with disabilities, it also may create new, unforeseen obstacles.

Conclusion

Exponential growth is occurring in the use of electronic networking to access Internet-based information and communications resources. The field of disability studies must focus on the effects of this growth in the lives of people with disabilities. Clearly, new networking technologies offer great potential that could facilitate or limit the integration of people with disabilities into broader circles of social, business, cultural, and educational activity. Radical changes appear possible—and perhaps probable—in how disability studies research will be conducted in the future and how people with disabilities will participate in shaping both disability studies research and curricula.