Katherine D Seelman. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
The National Science and Technology Policy, Organization and Priorities Act of 1976 has just about everything in it that would be useful, except the word “handicapped” … add a focus on the special needs of the handicapped to be served by new scientific and engineering technological developments.
In this quotation, Irving P. Schloss, on behalf of the American Foundation of the Blind in 1976, made a plea to have the newly adopted U.S. science and technology policy framework serve disabled people. Disabled people want to move beyond the confines of health and benefits policy, in which their interests have been segregated, to policy that can allocate research and development resources for assistive technology, accessible consumer products, built environments, telecommunications, and transportation.
The focus of this chapter is to show that the nature of science and technology, as well as its relative autonomy and self-governance, has had a limiting effect on participation by disabled people in government decisions about investments in technology. This effect may be similar to the experience of women, people of color, and poor people. Disabled people have traditionally faced barriers to active citizenship because of stigma, and their interests have been sequestered in health and benefits policies. Ironically, policymakers continue to sequester the needs of disabled people in health policy, despite the possibilities for applying cutting-edge science and technology—materials science and microelectronics—to accessible infrastructures and assistive technology as well as to medical rehabilitation. Consequently, disabled people have pursued their science and technology objectives through alternative policy channels, especially those of international human rights and national civil rights policy.
This chapter places the special case of the demands for participation in assistive technology decisions in the larger context of public participation in science and technology policy in the United States and, to a lesser extent, in the European Union and Japan. Although the science and technology interests of disabled people have been largely relegated to health issues, disabled people have been further stymied by the lack of participation within these governments. These democracies have few institutions through which citizens can become critically engaged in choosing or designing technology (Sclove 1995). For example, for most of the postWorld War II period, U.S. science and technology investments have been focused on the big missions of national security, space, energy, and health (Smith and Barfield 1996). In Europe, too, research and development for social needs such as assistive technology did not have the economic and industrial weight of other sectors (E. Ballabio, personal communication, 1999). Direct communications with policymakers, researchers, and advocates in Europe and Japan have allowed for a more candid discussion about allocations of resources such as applied research, regulatory behavior, and international issues. There is, of course, a great need to address the assistive technology demands of developing countries in which most disabled people live.
Clearly, disabled people have a fundamental interest in decisions about allocation of science and technology resources because these decisions involve issues of survival, freedom, and independence. However, both Europe and the United States have had difficulty separating health policy from that which encourages research for the development and deployment of technology that supports higher-level functioning and accessibility (E. Ballabio, personal communication, 1999). Ultimately, decisions about investments in research and development are decisions that can support or deter independent living, community integration, and learning and working in the community. For example, national science and technology policies could incorporate the principal of universal design and could make research and development investments in universal design applications for transportation, the built environment, telecommunications, and consumer products as well as in research to support medical rehabilitation and health and wellness for disabled people. A well-known U.S. architect, Ron Mace, defined universal design as “design[ing] all products and environments to be usable to the greatest extent possible by people of all ages and abilities” (Mace, Hardie, and Plaice 1991:2). However, diversity of function—diversity based on differences in hearing, seeing, moving, and processing information—is a new concept. Diversity of function, unlike gender, ethnic, and racial diversity, is not yet a widely recognized principal for understanding discrimination in science and engineering career paths and in the technological marketplace. The assistive technology marketplace is composed of many disability subgroups based on function. National science and technology policy could also compensate for the small, fragmented niche-assistive technology marketplace that is widely acknowledged to exist in Europe and the United States (Lane 1997). Users of assistive technologies are diverse in their functional characteristics. For example, the market for hearing aids is different from the market for augmentative communication devices.
Many terms in this chapter are open to definitional interpretation. For the most part, we adopt a position of a common understanding of these terms. Assistive technology refers to any item, piece of equipment, or product system—off the shelf, customized, or modified—that is used to increase, maintain, or improve functional capabilities of disabled individuals. Assistive technology is a broad term that may include individual medical devices such as implantable pumps for diabetes, chronic pain, spasticity, and Parkinson’s disease; social devices for individuals, such as augmentative communications boards for nonvocal people; and systems technology to give people access to transportation and to the built and information technology environments. For example, disability accessibility features have been built into the operating system for Microsoft Windows 95 and 98. The markets for medical and social devices for individuals and for systems technology can be quite different. There may be large markets for certain medical devices, but devices that support higher social function, such as augmentative communication boards, are usually small because of marketplace fragmentation. For example, the assistive technology user marketplace is composed of different disability subgroups (e.g., nonspeaking people) purchasing assistive technology appropriate to their functional needs. Assistive technology companies are often small companies with domestic rather than global marketing strategies. While third-party payers may fund devices for individuals, the devices must usually meet medical, not social use, criteria. Because of the fragmentation of the assistive technology marketplace and the small user populations, assistive technology is sometimes labeled orphan technology. Problems of small marketplaces and inadequate public funding support have driven the disability community to support the notion of universally designed buildings, information and transportation systems, and consumer products. At the design stage, these systems and products would have the capability to be used by a broad range of users, including those with diverse functional capability. Very different market forces operate for information technology and other large systems. Large companies, such as Microsoft and IBM, with global marketplaces, make choices about add-on features that might stimulate increased sales.
The terms science and technology are themselves the subject of considerable definitional discussions. For the purpose of this chapter, a somewhat crude line is drawn between basic science, on one hand, and applied science and technology, on the other. Rehabilitation science and rehabilitation engineering are subsets of applied science. Applied science and technology are used relatively interchangeably. According to policy analyst Bruce Smith (1990), science and technology policy is a subset of policy studies that involves allocations of research and development of science resources such as basic and applied research, commercialization, regulatory behavior, and international issues. The science and technology enterprise involves research, technology development, and training.
The disability movement, the establishment of disability studies and rehabilitation science in universities, and the allocation of research funds to support independent livingrelated research in the United States, Europe, and Japan are generating a body of knowledge framed in a social paradigm of disability. The social paradigm is an evolving framework that is characterized by a unit of analysis on the group level, interdisciplinary orientation, and an expanded range of disciplines, including disability studies, business and management, and information science. The literature on social movements is vast, as is the literature on participation in governmental decision making. A special issue of the Journal of Disability Studies on political participation by disabled people identifies major factors in participation resources, recruitment networks, and psychological engagement, including interest in issues and membership in groups that have common values or interests (Schur 1998). The international debate about the nature of science and technology has been the energizing intellectual force behind the establishment of new academic fields such as the social study of science and science and technology policy. Although academics from these new fields have paid scant attention to the activities of disabled people, they have made invaluable contributions to the historical, ideological, social, and policy implications of science and technology. Social studies of science, for example, have shown that demands for participation in decision making about science and technology are anchored in a historical debate between those who argue for the autonomy of science and those who argue for a linkage between science and technology and social goals. There are many nuances to this debate, not the least of which is whether power and values can be isolated from the process of doing science.
Three Approaches: Ideology, History, and Public Policy
We will use three different approaches to examine representation and participation of disabled people in science and technology policy and research. These include the following:
- An ideological approach to probe the assumptions about the nature of science and technology,
- A historical approach to identify the consensus about science and technology and government in succeeding stages after World War II,
- A public policy approach to describe the past and present bases for distribution of science and technology resources.
For the ideological approach, it is appropriate to ask if something in the assumptions about the nature of science and technology creates barriers to involvement by disabled people beyond being the subjects of scientific study. For example, do assumptions about normalcy and what is natural predispose the enterprise to exclude certain groups? If, as some believe, science must be self-governing to be innovative, and disability is a deviation from the norm, how can disabled people become legitimate participants in science and technology? As we shall see, thinkers who have disabilities have waded into this debate with great energy, arguing that discriminatory values are built into the science and technology enterprise.
The historical approach also tells a story about the development of consensus regarding the role of science, technology, and government and the corresponding influence and activities of disabled people in science and technology policy development. History provides a panorama of events that have implications for incorporation of the interests of disabled people in science and technology policy. Events such as war, the end of the cold war, scientific inventions of antibiotics and the transistor, and leaders with disabilities, such as Franklin Delano Roosevelt, may be factors in shaping the dominant views about participation in science and technology and in shaping decisions about allocation of resources. Following World War II, the great infrastructure of a global economy, driven by innovations in science and technology, has been built with competitive and dynamic marketplaces and a highly trained technical class. Different models for the authority and legitimacy of science and technology have characterized successive historical periods. These include the expert model, in which the scientist is the authority over decisions about allocations of science and technology resources; the civic model, in which citizens participate in decision making; and the economic model, in which economic factors drive allocation of resources. These models vary in responsiveness to various interests, including participation of laypeople. History has provided an interesting report of how disabled people have used advocacy and public policy tools to move their agenda.
The public policy approach identifies strategies used by disabled people and their technically trained allies to introduce non-health-related issues, such as universal design and orphan technology, onto the science and technology agenda. For example, democratic institutions, such as the European Parliament, and policy tools, such as standards development, have been useful in the implementation of science and technology objectives. A universal standard for wheelchairs, for example, makes it possible to market wheelchairs in a global marketplace. As with environmentalists and antimilitarist protesters, disabled people throughout the world have tried to use their social movement and more formal democratic institutions to further their policy goals. The importance of democratic institutions in scientific decision making and participation for disabled people is one of the most important themes in the chapter. Of course, research and development budgets are the best indicators of science and technology program commitments. They show over time who gets allocations of precious science and technology dollars and for what. A lengthy budgetary analysis is not within the purview of this chapter. There is a dearth of research on allocations of science and technology resources for rehabilitation science. The Institute on Medicine report, Enabling America, came up with a figure of less than $300 million (Brandt and Pope 1997).
Equity issues pervade the science and technology policy discussion as it applies to disabled people. At present, U.S. private and public research and development (R&D) is approximately 40 percent or more of the world R&D (Sarewitz 1996). The science and technology infrastructure that has developed since World War II does not extend to the poorest countries of Latin America, sub-Saharan Africa, and South Asia. On the disability and rehabilitation level, there are great inequities in the distribution of science and technology resources. On one hand, increases in the population of disabled and elderly people in the industrialized countries are generating interest and investment in assistive technology. Indeed, attention to these demographic trends addresses a major equity issue. On the other hand, because investments appear to be concentrated in industrialized countries, there is inequity in the distribution of resources because most disabled people live in Third World countries. Unquestionably, even in the industrialized countries, disabled people as a group are poor. However, disability movement activities, over time, have been effective in advocating for R&D investments for social purposes, such as accessibility in telecommunications that may have implications for global accessibility. A final section will set out a future agenda for research; this is no small matter for a world with an increasing population of people with diversity of function, especially older people. Public policy will be very much a part of that future agenda.
The Great Debate: Science and Technology for Whom? Who Decides?
The question of whether the inner content of basic science is socially constructed involves ancient philosophical positions that may never be resolved. However, these positions will be explored because they inform the dialogue about the social construction of applied science and engineering. The great and complex debate that continues today in the United Kingdom, Europe, the United States, and other parts of the world involves the nature of science and technology and the implications for public life and scientific training. Japan, as we will see, may have a different ideological basis for its science and technology activities than that of Western industrialized countries but, nonetheless, may face similar issues. In the West, two distinct approaches to the controversy have emerged. They can be reduced to one question: Is science a social phenomenon or not?
Positivism and Mechanism versus a Social Approach
Applying the notion of two approaches to science and technology studies, David Edge (1995) summarizes the debate well. He refers to the first approach as the “received view.” This approach assumes that science and technology are “asocial, impersonal activities—a positivistic, even mechanistic, picture of an endeavor that defines its own logic and momentum. The authority of nature is independent of, and prior to, the authority of society.” The other approach views science and technology “as essentially and irredeemably human (and hence social) both in the context that nourishes, supports, and directs them and in their inner character” (Edge 1995:3-23). According to Edge, the first approach found a particularly sympathetic audience in the East European and Soviet countries and in China, which at the time had centralized bureaucracies struggling to base decisions about investments in science and technology on expertise. The second approach, which assumes that science is a social system, is rooted in the sociology of science and the works of Robert Merton (1973), Thomas Kuhn (1970), J. D. Bernal (1939), and Michael Polanyi (1962). The debate also involved the education of scientists. Charles Percy Snow (1964) sparked the so-called two cultures debate in a lecture at Cambridge in the 1960s. Subsequently, there has been considerable discussion about whether to train scientists in a scientific specialized culture or a broad humane culture that would prepare scientists to act with social responsibility. The debate became particularly hot in the 1960s, a period of in tense questioning about military spending, civilian nuclear power, and the impact of science on the environment.
The Expert Model and the Social Model
English physicist John D. Bernal and Hungarian-born physical chemist Michael Polanyi are often cast in history in the roles of protagonist for each of the two approaches to science. In his now-classic article, “The Republic of Science,” which appeared in the journal Minerva, Polanyi (1962) explains why he believes science must be an autonomous enterprise. Polanyi argues,
What I have said here about the highest possible coordination of individual scientific efforts by a process of self-coordination may recall the self-coordination achieved by producers and consumers operating in a market. It was, indeed, with this in mind that I spoke of “the invisible hand” guiding the coordination of independent initiatives to a maximum advancement of science, just as Adam Smith invoked “the invisible hand” to describe the achievement of the greatest joint material satisfaction when independent producers and consumers are guided by the prices of goods in a market. (P. 56)
Polanyi’s position exalts the lone scientist, the expert whose activity must be uncurtailed to innovate and whose social context, guided by an invisible hand, inevitably coordinates and links these creative people, resulting in even more innovation. Bernal’s position is clearly that of a socialist who had a deep empathy for the scientific orientation of the Soviet Union. In his Social Function of Science, first published in 1939, Bernal praised the qualitative characteristics of Soviet science and its originality, particularly in the choice of problems, and attributed this to the trend toward choosing problems connected with experience. He attributed the insufficiently critical attitude of Soviet science to youthful enthusiasm that would be corrected over time. His position on the social nature of science is reflected in the following quote:
Induction and proof remain as they were … dialectical materialism can … do two things: suggest the direction of thought which are likely to be particularly fruitful in results and integrate and organize different branches of scientific research in relation to one another and to the social processes of which they form a part. (Bernal 1939:231)
An excellent summary of the Bernal-Polanyi debates is found in Christoper Freeman’s (1993) The Economics of Hope. The works of Bernal (1939) and Polanyi (1962) have had important implications for disabled people. Polanyi’s position, which may be more representative of science and technology policy in the industrialized countries, argues for the autonomy of science and its separation from social goals. Bernal believed that some method of determining government priorities for science and technology must be established and argued in support of debating these priorities and encouraging new initiatives. In doing so, as Freeman points out, Bernal laid the foundation for science and technology policy. Freeman observes that there are at least three areas of government involvement in science and technology. They are governmental provision for basic research, decisions about subdivisions of the global science budget (e.g., cell biology, chemistry, and medieval history), and responsibility for the health and efficiency of parts of the system (e.g., national laboratories, libraries, and patent offices). Freeman, of course, could have provided examples of research decisions of interest to disabled people such as a universal design program funded by national research and development budgets and conducted in national laboratories as well as support for training disabled personnel. Indeed, if governments allocate public resources for support for training scientists and engineers, then political and cultural factors may be introduced into the training.
Cultural Differences in the Training of Scientists and Engineers
The United States, Europe, and Japan have had a historical interest in maintaining cultural values as part of training in the sciences and in engineering. In personal correspondence with Dr. Shigeru Yamauchi of the National Rehabilitation Center for the Disabled in Japan, Yamauchi provided his interpretation of Japanese understanding of the nature of science and technology. He observes that there is not a tradition of truth in traditional Japanese and Chinese culture. By truth, he means activity to find out basic principles of nature. Yamauchi traces the current Japanese understanding of science and technology to Confucianism and to the notion of bushido, which insisted on absolute loyalty to the lords, continued as a robust concept in the modern period, and was understood as loyalty to support a rich and strong nation. Japan established its first engineering school, the Imperial College of Engineering, in 1873. The country has clearly enjoyed a lively dialogue on engineering training and curricula. In a 1877 article in the journal Nature, it was clear that the Japanese were critical of the engineering education in England, which was deemed too practical and training oriented, and education on the continent was deemed too theoretical (“Letter to the Editor” 1877:44). In a 1904 letter to the editor of Nature, Henry Dyer, said to be the father of Japanese engineering, stated the following on technical education in Japan:
Many of the men who are supposed to have had a complete technical education are very poor specimens of humanity, wanting in individuality and character, devoid of all originality and with a very narrow view of the world. Some of them may manage to pile up fortunes for themselves, but they will do little to make their country great…. The outcome of it all is that the national consciousness is directed to the attainment of national objects by men whose individual powers have been trained to make effective use of western science, and the results have been simply wonderful. (Dyer 1904:150-51)
According to U.S. rehabilitation engineer Dudley Childress, engineering schools in the United States have also had a historical concern about how to train engineers to be well-rounded individuals in society as well as persons of great technical ability and creativity (D. Childress, personal communication, 1999). The incorporation of cultural and civic values into technical training courses is seen as an important strategy for supporting a country’s traditional values and governmental philosophy. The academic study of science and technology has been highly sensitive to these and other subjective influences.
Gender, Culture, and Class
As the social study of science has developed, scholars have been critical of science and technology. For example, on the individual level, both feminists and disabled people have argued that discrimination on the basis of being different from the norm has excluded them from science. In the tradition of Bernal, they have also addressed the social system, arguing that limited control of the means of doing science has served a narrow band of economic interests. Writing from a feminist perspective, Evelyn Fox Keller (1999) notes the following:
Women were caught on the horns of an impossible dilemma—a dilemma that was unresolvable as long as the goal of science was seen as the unequivocal mirroring of nature, and its success as admitting of only a single standard of measurement. It was only with the introduction of an alternative view of science—one admitting of a multiplicity of goals and standards—that the condition arose for some feminists, in the late 1970s and early 1980s, to begin to argue for the inclusion of difference. (P. 236)
She describes the dilemma, in part, as women having to repudiate their gender, disavowing their difference from men to be productive in science. Keller (1999) argues that there are two power bases for the epistemological authority of scientists: exclusion on the basis of differences such as gender and exclusion on the basis of the nature of scientific knowledge as either objective or relative. This critique, of course, is very useful to disabled people who also have had to deny their identities as disabled people and, in fact, are labeled impaired and diseased and the subject of scientific study, which is objectified.
The literature also addresses the implications of assumptions about science and technology for minorities and Third World cultures, language, and religion. Citing disability research experience in China, Emma Stone (1997) counseled as follows:
Research into indigenous concepts of and responses to disability is a vital but frequently neglected part of researching disability in developing countries. To do this properly, the researcher should not be a slave to outsider theories or socio-political movements. Definitions need to begin with individuals, families and communities at the grassroots and not with outsiders. (P. 222)
Stone (1997) argues that academicians should not be spokespeople for the disability movement. She argues against disability researchers following on the heels of feminists and gay and lesbian researchers who have been proponents of identity politics, which often excludes as legitimate those who have not experienced the particular identity.
In the New Politics of Science, David Dickson (1984) presents a view that develops the Bernal orientation to a modern stage of science and technology policy in which economic objectives are paramount. Dickson recognizes the political nature of scientific decisions and issues related to allocation of resources. He explains, “I intend to … look at how the patterns of control over science reinforce and reproduce basic patterns of political control that operate in society. For the increasingly economic importance of science gives it political significance” (p. 5).
Dickson (1984) believes that science is the single most important factor molding the lives of others, replacing an individual, group, or social class with access to superior civilian or military force. Insofar as decision making about science and technology relies on “market forces to determine research and development priorities, it can skew priorities away from where the social needs are pressing and the economic incentives to tackle these needs is weak” (Dickson 1984:52). He cites, as an example, microelectronics applications for the disabled. Dickson’s analysis is supported by the inequities in the U.S. and European assistive technology marketplace referred to earlier. The assistive technology marketplace is fragmented, small, and weak. It lacks capital for research, development, and purchase. In the tradition of Polanyi and Bernal, Dickson posits two approaches to the social impacts of science and technology. He describes them as follows:
The first, favored by those who seek a “rational” approach to the problems by the imposition of solutions reached through a consensus of experts, can be characterized as the technocratic approach. Even when encouraging participation in the process of reaching consensus, this approach leaves unquestioned the basic political structures through which the solutions, usually expressed in technical terms, are to be put into effect. In contrast, the second approach stresses the importance of procedures as much as goals, arguing that the rationality of solutions offered by the experts is often illusory, and that the best protection against this is to exploit to the full the opportunities for wide participation in making decisions, not merely talking about which decisions should be made. This approach acknowledges greater confidence in the opportunities for participation offered by federal and state legislative bodies, by the courts and by broader political movements such as public interest groups and labor union, and bases its strategies on the assumption that the solutions to the problems caused by the applications of science requires a redistribution of political power as much as the insight of technical expertise. (P. 219)
In this quote, Dickson (1984) introduces into the debate the very important issue of the role of democratic institutions and people’s movements in participation in science and technology decisions.
The Disability Movement and Participation in Science and Technology
The disability movements in various countries have become more involved in the research process as well as in the legislative process. The intense anger expressed below from the book, No Pity, illustrates the motivation behind involvement of the disability movements:
Faith in technology can play into the hated image of cure and pity that the disability rights movement has sought to erase. No two devices have held the public more in awe than the Functional Electronic Stimulator (FES) and the cochlear implant…. To some, cochlear implants are a miracle. To others, they are an instrument of cultural murder. (Shapiro 1993:223)
Perhaps similar to feminists, low-income communities, and communities of color, disabled intellectuals view research as exploitative. Fed by dashed hopes and unintended impacts of technology suggested by the excerpt fromNo Pity, many disabled people have taken radical positions on the research process and on guidelines for policy. Some have also supported identity politics that would exclude from disability research researchers who have not had the experience of disability. These more radical critiques appear to be directed at applied social research rather than biological and engineering research. In England, for example, issues arose about the use of research to support professional power to control the everyday lives of disabled people and keep them institutionalized. Criticism was also leveled at the World Health Organization’s International Classification of Impairment, Disability, and Handicap (ICIDH) and researchers for not breaking the implied causal relationship between disability and impairment by recognizing the importance of environmental factors to the ability to function (World Health Organization 1980).
In England, a group of researchers developed an approach to research called emancipatory research (Barnes and Mercer 1997). Emancipatory approach assumes the need to transform the social and material relationship of research production. Barnes and Mercer (1997) describe the emancipatory paradigm as follows:
The emancipatory paradigm rejects the notion of researcher-experts moving between projects like “academic tourists,” and using disability as a commodity to exchange for advancing their own status and interests. The response of disabled people is quite simple: “no participation without representation.” (P. 6)
The significance attached to people’s subjective experience of disability and impairment is similar to that attached to the subjective experience of women. In much the same way as feminism, the respected English disability theorist Mike Oliver (1997) contextualized emancipatory research. He explains it in the following passage:
The development of such a paradigm stems from the gradual rejection of the positivist view of social research as the pursuit of absolute knowledge through the scientific method and the gradual disillusionment with the interpretive view of such research as the generation of socially useful knowledge within particular historical and social contexts. The emancipatory paradigm, as the name implies is about the facilitating of a politics of the possible by confronting social oppression at whatever levels it occurs. (P. 16)
Oliver (1997) argues that the emancipatory paradigm highlights reciprocity, gain, and empowerment. The emancipatory approach addresses not only the research process but also control of resources needed to undertake research. The resources needed to undertake research include funding but also power to establish the content and method of research priorities. Control over both process and resources, of course, implies social change potential.
Participatory Action Research
Proponents of the emancipatory approach are critical of the participatory action research approach (PAR) that has been emphasized by researchers in the United States. They argue that PAR reinforces power structures rather than developing or confronting them. Indeed, PAR is more oriented toward problem solving in particular situations than in social transformation. In a conference sponsored by the U.S. National Institute on Disability and Rehabilitation Research (NIDRR), PAR was defined as follows:
Participatory Action Research (PAR) is an approach to research designed to place individuals being studied at the center of the decision-making process. PAR has developed in a broader social context that has moved toward recognition of the personal expertise and particular needs and rights of individuals in society. It has emerged in a research context that is moving toward increasing use of qualitative inquiry strategies. The role and value of this approach in disability and rehabilitation research has been an ongoing topic of interest in the decade of the 1990s. (Tewey 1997:iv)
Researchers and Participation
The research community has been interested in the question of end-user involvement in research, particularly PAR. At a meeting of the NIDRR directors in January 1995, Dr. John Whyte, an American physician and researcher, presented a paper that described the complexity of objectives, roles, and function in research projects (Whyte 1995). He suggested that the social context of research and the nature of that which is studied are often confused. Whyte believes that PAR is most useful in studying and changing sociotechnical systems and promoting social change. PAR assumes that participants in sociotechnical systems have knowledge and information that are not possessed by “outsiders” (i.e., most researchers) and that this knowledge is needed not only to answer research questions but also to ask them. Using the transit system as an example, he notes that disabled people can identify the problem areas and therefore the research problems in using subways. Whyte is referring to the generation of research problems based on the experience of the disabled user of the public transit system. For Whyte, PAR really has nothing to say about nonsocial systems, such as the study of nuclear physics, except possibly for a role in the study of the social system in the lab, as well as development of training curriculum and how it is presented and taught.
In an e-mail dialogue with Professor Alan Newell, Department of Applied Computing, University of Dundee in Scotland, Newell clarified some of his recent comments on participation in the process of doing applied computing research (Newell 1998). Newell has been researching computer-based systems for people with disabilities for 30 years. He has addressed a number of controversies, including the role of the researcher, the defining characteristics of the research process, intergenerational equity, user participation, and ethical implications of user involvement. Newell argues that assistive technology research priorities and characteristics are different from those of health research and that the medical model is seldom appropriate for researchers in this field. He believes that such researchers should focus on the needs and the wants of users, and this is achieved by a user-centered design methodology. The involvement of clinicians and potential and actual users is very important, but this must be done with care; otherwise, it will compromise the very process that user participation is supposed to serve (Newell 1998).
Newell (1998) believes that assistive technology research is a long-term activity, and although the researcher should be sensitive to the needs and wants of the current generation of disabled people, the responsibility of the research community is to the next generation. He expresses his position in the following:
Particularly in this field, there is a tendency to avoid leading edge issues, because these are thought to be of little practical value, or involve new expensive and/or untried technology. We do a great disservice to disabled citizens of the future by not giving priority to such work. (Pp. xlviii-liii)
He argues that people with disabilities have as much right to eventually reap the benefits of “Blue Sky research” as able-bodied people. The research process must thus allow researchers to use their imaginations and try out ideas that are either not understood by the users or are not popular with them. As support of his position on an effective research process, he describes useful research findings and products that were not initially supported by users and clinicians. Within the research paradigm, disabled users must realize that they personally may not benefit from the outcomes of the research and that some research may show that certain techniques are not successful. An aspect that is not common to mainstream research, however, is the problem of informed consent. This can raise ethical issues of which the researcher needs to be fully aware. Newell (1998) says that at Dundee University, there are and have been both able-bodied and disabled researchers, and their research has been enriched by the perceptions of individual disabled users who are attached to the research group and by specifically constituted panels of users with disabilities. However, the input from these users is modified by the researcher’s vision of what can be achieved. As would be expected in a user-centered design paradigm, users have made tremendous contributions to the research over many years and to the commercial products that have grown from the research. The primary rewards for the individual users with disabilities within the research team come from their being internationally known in the field, attending international conferences, and giving lecture tours. They are truly members of the research team, and the group is very fortunate to have their input to the research.
When asked about ideas that are less than popular with the majority of clinicians and users at the early stage of research, Newell responded as follows:
I was referring to a number of products which we have produced over the years. The one which stands out was the overall idea behind our work on the original CHAT (Conversation Helped by Automatic Talk) system, and other systems we developed from this, such as Talksback. The idea was that it was more important for non-speaking people to say something than have complete control over what they would say. This idea was originally completely rejected by many therapists on the grounds that we were removing control of what they said from users. This antagonism lasted a number of years, but now is accepted by the majority in the field and many AAC devices contain features of this nature. (A. F. Newell, personal communication, 1999)
Clearly, the question of the degree of freedom and choice designed into devices is an issue for all users, but it may have particular significance for disabled users who use it as a substitute for basic human activities and thus may present more human rights and human freedom issues.
Technically Trained People who are Disabled
People such as Rolf Hotch kiss and Lars Augustsson, who have experience with disability and technical training, have described some of the dilemma of disabled people’s participation in research and development. In 1976, Hotchkiss stated the following:
Unless there’s a group of people who understand both the disabilities and the technical things at the same time, then it’ll be basically as it has been. It’ll be the technocrats misleading the disabled people, and vice versa in a way, and not a good deal of press…. It seems you need to really hunt and find people with a combination of abilities—and there are enough around—but most of the good, disabled engineers I know are in industry, and they’re not about to join the civil rights movement on a volunteer basis. (P. 217)
Lars Augustsson, an engineer, wasin charge of R&D in the field of motor impairments at the Swedish Handicap Institute from 1978to1988. Similar to Hotchkiss, Augustsson described the problemof being unable to have the best-informed consumers workingin key technical spots as follows:
In Sweden, consumer organizations usually do not have access to the best-informed consumers to send to advisory boards. Those disabled consumers who have enough expertise in an area such a stele communications are usually already employed in a company and the disability organization cannot compete. If for some reason they can afford to hire someone as “their expert on assistive technology,” as the larger organizations can, that person cannot be expected to be an expert on a large part of the field of assistive technology. (L. Augustsson, personal communication, 1999)
These comments by Hotchkiss and Augustsson further illustrate the barriers to decision making and participation and suggest the need for some compensatory activity in the policy arena. The characteristics of the policy arena, much like the ideological basis for participation in science and technology, are determined by prevalent historical factors.
Science and Technology Policy: The Historical Context
Assumptions about the nature of science and technology, the role of the citizen, and the objectives of science and technology policy as well as the development of an institutional framework for science and technology are evolving and are very much conditioned by opinion and attitude during recent historical periods. Bruce L. R. Smith (1990) has created a useful three-stage developmental framework for U.S. science and technology policy, beginning in the postWorld War II period. The framework arranges science and technology policy within three periods: the age of the professional or expert, the age of dissent, and a pluralistic period. Time frameworks, such as Smith’s, are not universal but rough estimations. His three-stage framework will be adjusted to provide a description of general trends in Europe and Japan and also to provide a description of the activity in the disability movement. Smith uses the framework to organize consensus about the role of science and technology and government within three postWorld War II periods. His framework is applied in the history section to serve three purposes. First, the framework is used to organize general trends in science and technology within postWorld War II stages, especially as they relate to participation. Important factors include consensus around whom should make scientific decisions, the goals of science policy, and the emerging governmental framework. Second, the time frame work is used and modified to accommodate the consensus of disabled people, about who should decide their policy issues and objectives and the means used to accomplish these objectives. Third, we will explore relationships between the general level and the level of disabled people. Finally, in each chronological stage, relevant policy tools are identified. Budgets, regulation, tax policy, and standards, for example, can be used either to benefit or deprive disabled people. They are very important to the next section on public policy.
1945-1965: The Age of the Scientist and the Professional
During this period, the expert model dominated the basis for authority in science and technology policy rather than models that are based on economics or popular democratic institutions and movements. This is a period of restoration of industry and economic growth in Europe and Japan, where vast areas of infrastructures were destroyed during World War II. Japan, in particular, went through a period of technology transfer to be followed by economic growth and rapid industrialization. The industrialized countries, especially the United States, expanded its resource base to support industrial innovation with large investments in basic research. It was also the beginning of the cold war and the launching of Sputnik by the USSR.
In the United States, federal investments in research and development were in defense, space, and atomic energy—all essentially derived from the cold war. Although some believed that the relationship between universities and business was too close and that the public would be better served if the nonspecialist controlled the scientific effort, this position did not prevail. In the United States, a consensus about science was more or less guided by Vannevar Bush’s (1990) report, Science—The Endless Frontier. The report seemed to suggest a linear line from basic research to commercialization. Reminiscent of Adam Smith and Michael Polanyi, commercialization, according to Bruce L. R. Smith (1990), was assumed to come almost automatically as a result of the government’s support of basic and applied research. The authority of the expert and the professional was reflected in rehabilitation.
Disability and Rehabilitation
One of the great influences on future allocations of science and technology resources for disabled people was launched during the 1945 to 1965 period. The United Nations (1948) adopted the Universal Declaration of Human Rights as the framework for the rights of many groups. Disability groups would draw on human rights to substantiate their need for assistive technology for social integration.
However, most rehabilitation activity in the United States, Europe, and Japan was mobilized to address the medical needs of those injured in World War II, especially veterans. Health and benefits programs were established. This was a period of development of the fields of medical rehabilitation and rehabilitation engineering. For U.S. rehabilitation engineer Dudley Childress (1977), who wrote Historical Sketch Concerning Federal Support of Research to Aid the Handicapped, World War II marked the beginning of U.S. science and technology inrehabilitation (Childress 1976; see also Brandt and Pope 1997). In the field of assistive technology, research and development focused on advancements in the more medically related technology of prosthetics and orthotics. Early identification of assistive technology within medical technology may be the basis of seemingly intractable perception within policy that links the technology needs of disabled people with the health domain. Recognition of the need for social technology would wait for another period. Individual countries, such as the United Kingdom and the United States, were active in building professional capacity, not only in medical rehabilitation and rehabilitation engineering but also in vocational rehabilitation.
In the United States, Mary Switzer, who was named head of the U.S. Office of Vocational Rehabilitation in 1950, was instrumental in the development of vocational rehabilitation training to support employment rather than dependency for disabled people (Obermann 1965). She broadened disabled policy to include employment objectives. She also brought the United States into international rehabilitation. The Office of Vocational Rehabilitation supported projects in Israel, India, Pakistan, Egypt, Poland, Yugoslavia, Brazil, Burma, and Syria. Research included development in the design and manufacture of prosthetics and orthotics that would be made available to U.S. manufacturers. During this period, the United States supported exchange of international experts in rehabilitation, especially medical rehabilitation.
Big Science and the Third World
Western aid to developing countries during this period has been described by Nora Groce (1992) as follows:
Until recently, Western professionals were considered … the final arbiters of needs of people with disabilities and international aid was directed toward the building of rehabilitation centers and projects, and the training and support of professional groups. In the Developing World, state of the art hospitals, institutions and clinics were the equivalent of enormous hydroelectric dams and highways through the jungles. While often effective in their own right, these programs were simply not reaching many who need[ed] them most. (P. 97)
According to Groce (1992), a new approach, known as community-based rehabilitation (CBR), was introduced at the 1969 meeting of Rehabilitation International in Ireland. CBR emphasizes essential services, economic development, and the importance of training disabled people, family members, and local health personnel in rehabilitation techniques that make a difference in an individual’s ability to do everyday tasks. CBR has much resemblance to an empowerment or independent living approach.
Europe and Japan
The European Union countries have had a long history of involvement in disability. Some of that history is captured in the country-by-country descriptions in the 1994 European Union study, titled European Service Delivery Systems in Rehabilitation Technology (Commission of the European Communities 1994). The following description of the immediate postWorld War II period for the Netherlands is particularly interesting:
The multi-disciplinary approach in rehabilitation was designed. Rehabilitation centers were established to concentrate professionals and expertise in specialized centres. Areas such as technical aids, mobility, transport and accessibility, however, were not identified as rehabilitation. Progress was made on medical aspects of prosthetics and orthotics. (Commission of the European Communities 1994)
According to Dr. Yamauchi, the postWorld War II period and the occupation of Japan by forces under General Douglas MacArthur was a most difficult time in modern Japanese history. Yamauchi notes that new dealers in MacArthur’s headquarters established the basic structure of legislation for disabled persons and tried to establish a social welfare system. In rehabilitation, the main measure was to provide prostheses to war casualties. There was no participation of disabled people in R&D (S. Yamauchi, personal communication, 1999).
In general, in the early postWorld War II period of 1945 to 1965, an expert model prevailed as the basis for science and technology authority. Governments directed their resources to reconstruction of industry, revitalization of the economy, and rehabilitation of those injured by war throughout the world. The United States, in the enviable position of emerging from the war without major destruction of its industrial capacity, took an early lead in science and technology investments in basic research that would be maintained throughout the cold war. There was a consensus around the importance of the Western scientific model, the establishment of a large scientific infrastructure, and the authority of the expert to decide about investments to support economic activity and technological development. However, the international human rights effort was launched, and the rights approach would eventually be a countervailing force to the approach based on the sole authority of experts.
These characteristics were also evident in disability and rehabilitation. Although representatives from veterans organizations began to articulate their needs, the voice of the disabled consumer was not yet heard. Disciplines, such as medical rehabilitation and rehabilitation engineering, were established, and a cadre of personnel was trained to meet the needs of those injured in war. Much like the larger research and development field, rehabilitation became medicalized and professionalized. The range of technology, like rehabilitation itself, was associated with medical needs, especially prosthetics and orthotics. In the early stage of this period, rehabilitation research and development investments flowed into medical fields and later into the new field of vocational rehabilitation. Again, a professional cadre developed. In the developing world, while community-based rehabilitation was launched, large-scale Western science was the dominant model. Even in this period, there were signs of broadening the rehabilitation horizon beyond medical technology to access to the built environment. Canada issued a national building code supplement in 1965 on building standards for the handicapped.
1966-1980: The Age of Dissent
People’s movements challenged the basis of authority for science and technology decisions and demanded more participation into decisions. This period is characterized by protests. As science and technology were increasingly associated with political and economic power, a civic culture emerged. The consensus around the authority of experts and professionals that marked the previous period broke down. In Japan, students revolted against authoritarianism of universities and criticized scientific research. Thalidomide babies attracted people’s attention. Lawsuits were initiated against pollution. The antiwar movement in the United States and the environmental movement that swept the United States and Europe were examples of protest against leaving science to the scientists (Organization of Economic Cooperation and Development [OECD] 1979). The objectives of science and technology policy and R&D investments were questioned insofar as they seemed to support a vast military complex and generate environmental damage.
Countries further institutionalized their science and technology practices. In the United States, the law that was the source of Schloss’s (1976) lament (see the beginning of this chapter) was adopted. However, very tenuous attempts were made to create democratic structures for decisions about science and technology. Community-based research projects were supported in some of the European countries (Sclove 1995). The U.S. Congress established institutions, such as the Congress Office of Technology Assessment (U.S. PL 92-484), to address the social implications of technology. U.S. President Jimmy Carter, by Executive Order 12044, directed all agencies to ensure that opportunity existed for early public participation in the development of federal agency regulations. The OECD (1979) issued a report titled Technology on Trial: Public Participation in Decision-Making, Related to Science and Technology. Dorothy Nelkin, editor of Politics of Technical Decisions, observed that the political protests might have been less against specific technological decisions than against the declining capacity of citizens to shape politics that affect their interests and less against science than against scientific rationality to mask political choices (Nelkin 1992). Questions about the appropriate level and mode of participation of nonscientists, as well as the role of the politically accountable generalist policymakers in the design and evaluation of research programs, were asked by environmentalists, antimilitarists, and disabled people.
Disability and Rehabilitation: Human Rights
The movement for human rights continued forward and began to associate human rights with access to technology. The Declaration on the Rights of Disabled Persons (United Nations 1975) was proclaimed by the United Nations General Assembly on December 9, 1975. (For a collection of pertinent international documents, especially those by the United Nations, go to http://www.independentliving.org.) This document included the right to prosthetics and orthotics, indicative of the kinds of injuries that veterans had experienced in World War II. However, future international declarations would cite assistive technology more broadly as aids and devices. According to Dr. Yamauchi, the 1981 International Year of the Disabled brought a concept of normalization into Japan. From then on, normalization, full participation, and quality of life have been key words in disability policy.
The civil rights approach was further advanced during this period. The United States adopted the Rehabilitation Act of 1973 (PL 93-112) that provided for the statutory basis for rehabilitation services, including assistive technology, but also prohibited discrimination against people with disabilities in federal employment and related activities. U.S. courts would interpret the obligation to desist from discriminating as an obligation to provide reasonable accommodations in employment.
People in various countries expressed the need for research to support the development of accessible infrastructures and assistive technology for social integration. In 1976, the U.S. Congress held hearings on research for disabled people. The hearings were inspired by various professionals and advocates such as William A. Spencer and Lex Frieden (1976), who later would become instrumental to the development of the Americans with Disabilities Act (ADA, PL 101-336) (U.S. House of Representatives, Committee on Science and Technology 1976). Incidentally, these hearings led to the establishment of the National Institute on Disability and Rehabilitation Research (NIDRR) in 1978.
Social Model of Disability
The 1976 testimony of Andre Dessertine from the World Veterans Federation in Paris set forth a comprehensive social framework for the policy issues and objectives of disability research and the authority of the disabled person in the rehabilitation process—inadvertently providing support for a link between science and social goals. Implying that applied science through medicine is not objective, Dessertine argued that from the beginning of medical care, the physician should take a holistic approach so that the disabled individual is not an object of medical care but an individual with his or her own personality and social group. Dessertine observed that the environment is manmade and that barriers are designed by human beings. He described the difficulty getting around on the streets, finding housing, and carrying out activities of daily living. He introduced the notion of universal design of the social environment. He also argued that devices for individuals must be integrated in that individual’s functional and social needs and that the individual should choose whether to accept the device. He also addressed the Third World and the need for cultural sensitivity to their needs (U.S. House of Representatives, Committee on Science and Technology 1976).
Independent Living, Participation, and Freedom
In their testimony during the 1976 congressional hearings, U.S. independent living representatives delivered a stinging criticism of rehabilitation practices. They testified to the legitimacy of their need to shape politics that affect their interests by recommending modes of participation in decisions about the design and evaluation of research programs. Spokespersons, such as Penny Styles and Judy Heumann, claimed that disabled people had been shut out of the process of research and development of products to meet their needs (U.S. House of Representatives, Committee on Science and Technology 1976). Reminiscent of Michael Oliver in England, they suggested that research projects be chosen more on the basis of the researcher’s interest in the problem than on the basis of the need of the disabled person. Able-bodied individuals make decisions about which devices to invest in and test the technologies under development. They questioned the effectiveness of assistive technology research that limited trials to clinical settings rather than settings in the community. If disabled individuals use technology to live effectively in the world, then it must be tested in the world, not only in clinical settings. They recommended a participatory mechanism to alleviate the problem. Panels of disabled people should be set up to recommend which federal grants would be funded. Disabled people could also help guide the development of concepts, based on experience as well as whatever training they bring to the job. Some of these recommendations would be in corporated in a 1982 U.S. Congress Office of Technology Assessment (OTA) report, Technology and the Handicapped (U.S. Congress Office of Technology Assessment 1982). The OTA report identified a number of reasons for inadequate consumer involvement, such as attitudes and willingness to interact with disabled people. The OTA noted that a very critical reason for the inadequacy of consumer involvement is a lack of knowledge about how to design the advisory mechanisms that consumers would fit into to ensure effective involvement.
Independent living representatives also brought up issues about the role of disabled people vis-à-vis professionals and the contribution of disabled people to bridge gaps and talk with professional associations about what is available and what should be provided. Heumann, for one, emphasized the need to establish standards for technology and have government support these standards (U.S. House of Representatives, Committee on Science and Technology 1976). Both professionals and advocates regarded standards as an important public policy tool.
The problem with protection of research subjects, potential liability, and who decides about risk is another area of concern and contention for researchers and consumers. Reminiscent of Alan Newell’s (1998) observation about risk factors (discussed earlier in this chapter), independent living advocates took a very clear position on the relationship between risk and freedom. Penny Styles of the Westside Community for Independent Living in Los Angeles testified as follows:
There are those individuals and groups who hesitate to accept the handicapped in positions regarding research and development of new products not because they doubt the intelligence of the handicapped, but rather they fear the risks involved. Manufacturers call it “potential liability.” We call it: limiting the freedom of each individual who is disabled, and who wants to be a part of the answer to his problems of mobility and lifestyle. (U.S. House of Representatives, Committee on Science and Technology 1976:200)
International issues were also addressed at the 1976 congressional hearings on disability research. Certain countries were identified as models for technology research and deployment. Judy Heumann, among others, seemed to envy activity going on abroad, especially in Sweden. Sweden seemed to have incorporated disabled people in the evaluation of equipment and decisions about where the government money was being spent. There was also testimony about the need for more investment in and international coordination among research and deployment entities. Jack M. Hofkosh, from the American Physical Therapy Association, reminisced about the development of the field of rehabilitation, noting the medical imperative in getting the wounded back to duty and later the social imperative for social reintegration. In a stinging criticism of practice as it was conducted in 1976, Hofkosh said that today, more than 35 years later, a wheelchair, crutches, arm and leg prostheses, canes, and braces were only slightly more tolerable than in earlier times. A system must be found that uses the myriad adaptations—which to date have been designed and usedincountries such as Sweden, Great Britain, Denmark, and the United States—that have tried to meet unresolved needs. Hofkosh argued for designs specifically for the disabled rather than remade able-bodied equipment. Hofkosh defended the need for orphan technology as Dessertine defended the need for universal design (U.S. House of Representatives, Committee on Science and Technology 1976).
Indeed, like the United States in the period from 1966 to 1980, European countries, such as the Netherlands and Sweden, were also transitioning from a research and development period characterized by medicalization and caregiving to a more emancipatory period in which consumers were more in charge. A decade before the United States established NIDRR, Sweden established the Handicap Institute in 1968, later hiring Lars Augustsson as the director of technical services.
In general, the 1966 to 1980 period was characterized by the activities of citizens who became more conscious of the fact that science and technology involved extraordinary political power and that decisions about allocations of these resources were narrowly controlled. The global economy, driven by the great engines of science and technology, was on the horizon. Questions were asked about the role of government, the goals of science and technology policy, the use of research and development investments, and the emerging science and technology framework within governments. A tenuous democratic response emerged in the form of an institutional role for technology assessment, community-based research, and open universities. A short-lived People’s Science movement was launched. This civic culture introduced into mainstream attitudes and scholarly literature the notion of the social nature of science and technology.
For disability and rehabilitation during this period, parallel activities occurred. Dessertine and others articulated a social, rather than a medical, approach to meet the needs of disabled people. Heumann and others went to the heart of the nature of the science controversy by arguing for a change in the power relationship between consumers and researchers. She suggested that legitimacy should be based on the needs of the user and that the experience of the disabled person was a basis for scientific authority (U.S. House of Representatives, Committee on Science and Technology 1976). Furthermore, disabled people should have the right to decide about the risks that they are willing to take. Disabled people used public hearings in a democratic representative institution—the U.S. Congress—to argue for the establishment of participatory mechanisms, such as panels with authority to decide about research funding projects. They saw standards as a very important policy tool for accomplishing their technological goals. Finally, consumers, researchers, providers, and industry in the United States formed a consensus around the need to devote research and development resources to solve problems in social integration. In 1978, Congress established the National Institute on Disability and Rehabilitation Research. Thus, the United States joined some European countries in the recognition that R&D funds should be directed to applied research.
1981-1999: A Period of Economic Hegemony
The period from 1981 to the middle of 1999 was characterized by the alignment of research and development with economic objectives. The earlier model of a semiautonomous scientific enterprise that characterized U.S. science and technology policy and perhaps that of other industrialized countries was no longer dominant. The expert model became insufficient to a world dominated by economic institutions and a global marketplace. A new model had emerged in which science and technology were strongly associated with the economy. Technocratic optimism had reemerged in the 1980s with the resurgence of innovation in biotechnology, microelectronics, and new industrial materials. Even in the 1980s, globalization and shifting geopolitical relationships were evident. The European Union established a research and development framework that became the principle driving force behind science and technology cooperation in Europe (Commission of the European Communities 1997). With the signing of the Treaty of Maastricht in 1992 and the establishment of a common currency in 1998, Europe became more capable of binding member states to its decisions.
The fall of the Berlin Wall in 1989 and the dissolution of the USSR closed an era in science and technology policy and opened another. Europe and the United States sought new markets in East Europe and in the new countries that were the former USSR. However, a European document on science and technology (S&T) indicators expressed concern that the less-developed south remained largely excluded from the international science arena (Commission of the European Communities 1997). A U.S. report on S&T indicators does not even refer to these countries, most of which are located in Latin America, South Asia, and sub-Saharan Africa (U.S. House of Representatives, Committee on Science 1998).
Free from the rationale that the cold war required huge military budget subsidies, science and technology decision makers were now open to questions about the social objectives of science and technology in the context of basic policy directions. There is no doubt that Europe and Japan were also driven by demographic trends that showed a bumper crop of older people. To some extent, the industrialized countries began to relate science and technology resources to human and social purposes. In a 1998 paper for the European Parliament and Council on the Fifth Framework Programme of the European Community for Research, Technological Development and Demonstration, the European Commission argued that research efforts should address issues of public concern such as employment, quality of life, and competitiveness (Commission of the European Communities 1998). These funds have supported disability projects. Like the other industrialized countries, science and technology in Japan were tools for serving the economy but also emerged as tools for the welfare of the people. Japan adopted a Science and Technology Basic Law in 1995 and a Science and Technology Basic Plan in 1996. Dr. Yamauchi interprets this plan as using science and technology to build a strong nation but also to serve the welfare of the people (S. Yamauchi, personal communication, 1999).
In the United States, there were signs of support for more participation in science and signs of disregard of participation. On one hand, in 1995 after the election, a new Congress voted to eliminate the U.S. Congress Office of Technology Assessment. On the other hand, a 1989 National Academy of Sciences report, Federal Science and Technology Budget Priorities, lists among four categories of science and technology research systems, a category that links science and technology to major national priorities of democratic institutions of the Congress and the presidency. The category also names issues such as environmental change and research on AIDS. In a New England Journal of Medicine editorial, Dr. Harold Varmus, director of the National Institutes of Health (NIH), announced the implementation of two important recommendations from a recent National Academy of Sciences Institute on Medicine report. NIH had established an office of public liaison, offices in each institute and center, and a Director’s Council of Public Representatives (Varmus 1999). Harvey Brooks (1996), a distinguished U.S. science and technology scholar, spoke of a new paradigm for science and technology introduced by the Clinton administration. The new paradigm speaks not only to the creation of new knowledge but also the integration of old knowledge with new knowledge and enlistment of it in the betterment of the human condition. Perhaps as an expression of the new paradigm, on January 13, 1999, President Clinton announced support for assistive technology budget items related to accessibility in telecommunications (White House, Office of the Press Secretary 1999).
As in the past, global human and civil rights activity has been relentless in advocating accessible infrastructures and the availability of devices to live, learn, and work in the community. In 1983, the World Programme of Action Concerning Disabled Persons stated that efforts should be increased to develop rehabilitation services and to transfer technology that addresses disabling conditions (United Nations 1983). A briefing document prepared for a U.S. European Union transatlantic conference held in 1998 in Spain points to the importance of the rights-based perspective on disability worldwide and the role of the United Nations and its various specialized agencies in promulgating this perspective (US/UE Conference 1998). In 1993, the General Assembly of the United Nations adopted the Standard Rules of the United Nations on the Equality of Opportunities for People with Disabilities.
This document is the main reference for the universal rights for people with disabilities and operates as a framework for reflection of the policies of member states. The Standard Rules addresses accessibility in the physical environment and access to information and communication. The landmark Americans with Disabilities Act (ADA) was enacted by the U.S. Congress in 1990. The ADA provides for civil rights protections in employment, public goods, and services, including transportation, private goods and services, and telecommunications. Availability of assistive technology as a reasonable accommodation and accessible infrastructures are central to the provision of civil rights protection. In 1997, the European Union adopted the Treaty of Amsterdam that addresses discrimination based on disability (European Commission 1997). In 1993, Japan adopted the Basic Law for the Disabled Person, using the ADA as one model for the law (S. Yamauchi, personal communication, 1999). After the United States and the European Union signed the Science and Technology Agreement in 1998, both delegations included representatives of disability agencies committed to an independent living model.
Applied Research and Development in the United States
In the United States, investments in R&D began to divide between those directed specifically at medical rehabilitation and those with broader objectives. In 1990, the National Center for Medical Rehabilitation Research was established within the National Institutes of Health (PL 101-613) to conduct and support rehabilitation research, training, and dissemination of health information. The nation’s scientific establishment began to recognize disabled people as a minority that must be incorporated in its efforts to train future scientists and engineers. In 1999, the congressionally mandated Commission on the Advancement of Women and Minorities in Science, Engineering, and Technology Development added disability to the groups represented on the steering committee (U.S. House of Representatives 1998). During this period, the National Science Foundation and the National Institutes of Health (NIH) had already targeted some support for disabled students and researchers. The NIH, for example, had established a research supplement for disabled individuals and a predoctoral fellowship award.
The National Institute on Disability and Rehabilitation Research
The National Institute on Disability and Rehabilitation Research (NIDRR), founded in 1978, had established itself as a leader in assistive technology policy and research and development. Reflecting the U.S. bias for investments in basic research and in big mission-oriented research rather than applied research and diffusion of knowledge, NIDRR has been constrained by a relatively flat budget. NIDRR is a comprehensive research institute with programs in medical rehabilitation, rehabilitation engineering, and the social sciences. NIDRR supports 14 rehabilitation engineering research centers and administers a technology deployment program under the Assistive Technology Act, originally adopted in 1988 (PL 100-407). Initially, NIDRR’s research investments were more medically oriented but also included rehabilitation engineering research on devices for individuals, including prosthetics and orthotics, wheelchairs, hearing aids, and Braille printers. Eventually, research in universal design in the built environment became part of NIDRR’s research investments as well. Recently, NIDRR has increased its investments in systems-level, information-age technology, including telecommunications, telerehabilitation, and universal design. In the tradition of Mary Switzer and the first historical period in U.S. rehabilitation, NIDRR has also increased its support for international rehabilitation with projects for consumers, professional exchange, and land mine survivors. NIDRR provides research support to individual scholars through the New Scholar’s Program for undergraduate disabled students and the Switzer Fellowship Program, open to all scholars at the doctoral and postdoctoral levels. These programs have enabled a number of disabled students to enter the field of rehabilitation science and disability studies.
Appropriate to the international nature of science and technology, NIDRR has had a partnership relationship with the Rehabilitation Engineering Society of North America (RESNA), which has an international network. Established in 1979, RESNA was conceived as an interdisciplinary society to promote the transfer of science, engineering, and technology to meet the needs of disabled individuals. RESNA members provide a forum for discussion and professional development and have been instrumental in the development of international technical standards for assistive technology.
The incorporation of assistive technology into mainstream research and development increased. In 1997, the Association of Access Engineering Specialists (AAES) was formed as a specialty under the National Association of Radio and Television Engineers (NARTE) and in partnership with RESNA. The AAES’s purpose and mission are to initiate, foster, and promote an ongoing dialogue between the disability community and industry. The AAES is but one indication that industry and mainstream research and development are beginning to respond to new regulations that require accessibility. Companies, such as Microsoft, have set up accessibility units and hired personnel trained in rehabilitation engineering and related fields.
During this period, the U.S. Congress has increasingly recognized the importance of technology for disabled people. In addition to the ADA and the Assistive Technology Act, Congress passed the Telecommunications Act of 1996 (PL 104-104), the country’s basic communications law. Section 255 of the Telecommunications Act requires that telecommunication service and equipment be accessible where readily achievable. In 1998, in recognition of the influence federal procurement can have in the marketplace and the purchase of accessible equipment, Congress strengthened Section 508 of the Rehabilitation Act of 1973, which directs federal agencies to comply with electronic equipment accessibility (PL 105-220). The political process that brought about these accessibility features were indicative of a maturity in the relationship between disability community advocates and their technically trained colleagues in the research community. Gregg Vanderheiden, a principal investigator for a NIDRR engineering center and an internationally recognized engineer, was central to the effort.
Applied Research and Development in the European Union
With the establishment in the 1980s of a coordinated effort for research and development within five-year frameworks, Europe also invested in a coordinated research and development effort for disabled people beyond medical rehabilitation and health. In the 1980s, the European Union supported a number of studies in the area of telecommunications, such as COST219 Future Telecommunications and Teleinformatics Facilities for Disabled People in 1986 (Ballabio and Moran 1998). With support from the European Parliament, they became convinced of the necessity for a distinct research and development program in the field of disability. The parliament allocated funds for a program called Technology for the Integration of Disabled and Elderly People, popularly referred to as TIDE.
The TIDE program was initiated in 1991. Unlike NIDRR in the United States, which had a broader constituent base, TIDE’s origins are more limited to the demands of European researchers in the assistive technology field.
Technology for the Integration of Disabled and Elderly People (TIDE)
TIDE had a long and difficult birth, according to Egidio Ballabio, a former TIDE disability and elderly unit director. In personal correspondence, Ballabio indicated that the program has always been a matter of political maneuvering between those who would have it under a health and medicine program and those who would have it independent of that program. He emphasized the importance of members of the European Parliament in supporting TIDE. In the Fifth Framework Program (1998-2002) for research, technological development, and demonstration activities, the European Parliament again set aside a plan to merge disabled and elderly activities with health activities and supported a separate program (Commission of the European Communities 1998).
TIDE was initiated to meet the needs for advanced technologies to improve the capacity for elderly and disabled people to deal with ordinary life situations. The rise of the elderly population was a major factor. In addition, markets for research and technology were highly fragmented by national regulation, culture, sector, and even impairment. Because of its origins within the European Union’s market-oriented research and development effort, TIDE, far more than NIDRR, has been sensitive to economic forces. The TIDE model involves supporting collaborative research and development projects through collaborative ventures from different sectors in the member states of the European Union. TIDE is helping to develop a supportive infrastructure and market conditions for a successful European assistive technology (AT) industry. Although not R&D, certain support actions are important to the success of TIDE, including analysis of market initiatives that encourages standardization, regulation, and rationalization.
Ballabio notes that there are a number of challenges, including the following:
- Assistive technology is still considered a medical matter.
- Europe lacks policy and legislation that would correspond to the ADA and the Rehabilitation Act.
- The AT sector is competing with R&D funding with sectors of much higher industrial and economic weight.
- User involvement needs to be stimulated.
Ballabio strongly recommends that these challenges are addressed and that continued support is directed to product development and standardization activities as well as to ethical and human rights issues (E. Ballabio, personal communication, 1999). In this way, the Europeans have emphasized the very important role of public policy tools to support assistive technology for independent living. In Europe, like RESNA in the United States, an association of technical people was formed. In 1995, the Association for the Advancement of Assistive Technology (AAATE) in Europe was established to stimulate the advancement of assistive technology for the benefit of persons with disabilities, including elderly people. AAATE looked to TIDE as RESNA does to NIDRR for a complementary relationship in research and development.
Applied Research and Development in Japan
Japan also was developing a broader range of research and development support for its disabled and elderly. The elderly population became a major social issue in Japan. According to Dr. Yamauchi, people began to pay attention to assistive technology, especially personal care and household appliances. Prostheses were not the representative assistive devices anymore. Social participation and independent living of disabled people became a main issue (S. Yamauchi, personal communication, 1999). As indicated earlier, Japan passed the Basic Law for Disabled Persons in 1993 under the influence of the ADA. The country also enacted the Technical Aids Law in 1993, which aims at R&D and service delivery of assistive technologies. Users began to participate in decisions on research and development of assistive technology. Giant business enterprises such as Panasonic, Hitachi, and Mitsubishi are now taking part in the assistive technology market where the quality is nearly the same as that in Europe and the United States. Japan has also been working with Third World countries. The National Rehabilitation Center is engaged in training professionals from Asia, Africa, and South America. A program of user participation is run by the Japan Society for Rehabilitation of Persons with Disabilities (JSRD). It has a training course for rehabilitation experts and leaders of the organizations of persons with disabilities. JSRD also organizes the Rehabilitation Action Network for Asia and the Pacific.
Between 1981 and 1999, science and technology were more closely aligned to economic objectives of the industrialized countries. Expertise diversified into areas of marketing, international finance, corporate management, and science. R&D was clearly tied to creation and support of rich and powerful nations.
After the end of the cold war, geopolitical consolidation, scientific innovation, and a global infrastructure emerged for many of the countries of the world, but not for the world’s poorest countries. Science, engineering, and industry support the development of a technical cadre of trained engineers, scientists, and management specialists. However, it is unclear whether policymakers will direct science and technology resources beyond economic objectives to serve social welfare needs for food and shelter, education, housing, transportation, information technology, and the environment science and technology. Of the great emerging industrial areas of biotechnology, microelectronics, and material sciences, there is some indication that telecommunications and informatics may be incorporating policy interests beyond simple return on investment.
For disability and rehabilitation during the 1981 to 1999 period, the human rights agenda in the international arena and the civil rights approach adopted by many countries began to be integrated into laws pertaining to mainstream technology, such as the U.S. Telecommunications Act. Responding to the imperative of increases in the elderly population, as well as pressure from the disability movement, research and development programs were broadened beyond health to address technology issues for daily living and for universal design. However, many countries have not yet adopted the political infrastructure to support these programs.
In the United States, in particular, advocates and researchers had begun to work together on universal design problems such as access to telecommunications. With support of the new research and development agencies and professional associations, a technical cadre developed that was more identified with independent living. Some opportunities opened to support disabled students in science and engineering careers and disabled laypersons as participants in the research process. Public policy tools, such as regulations and standards, became increasingly useful in the joint pursuit by disabled people and technically trained allies for science and technology policy objectives. While these advancements pertain particularly to the industrialized world, some of them may have benefits for the Third World.
Science and Technology Policy
Trends in the allocation of science and technology resources since the end of the cold war seem modestly supportive of social objectives in targeted areas. However, R&D expenditures in one country—the United States—show the extraordinary disparities in the distribution of science and technology. In 1994, the U.S. federal R&D budget amounted to about $70 billion. Adjusted for inflation, the R&D was the same in 1995, when it accounted for about 1.2 percent of the gross domestic product. Nearly 55 percent went to military R&D, and even today, military R&D remains about 51 percent of total U.S. government R&D investment (Committee on Criteria for Federal Support on Research and Development 1995). According to Brandt and Pope’s (1997) Enabling America, total federal spending on programs emphasizing rehabilitation-related research represented $147 million. This amounted to about 0.2 percent of the 1995 federal R&D budget.
However, the most recent period does show some promising trends both on the general level and the level of disabled people. Minority rights have become an important factor in the recruitment and training of scientists and engineers. The human rights umbrella is now also beginning to expand to use minority incentives to include disabled students and researchers. In addition, using democratic political institutions such as the U.S. Congress and the European Parliament, rather than the more expert-oriented process within scientific institutions, the disabled community has managed to achieve some support for universal design and orphan technology through legislation and programs. The U.S. Telecommunications Act and the TIDE initiative to support commercialization through integration of the assistive technology marketplace in Europe are but two examples. The United States, Europe, and Japan have also begun to distinguish between technology for health and technology for social integration by allocating modest budgets to programs such as NIDRR, TIDE, and the National Rehabilitation Center.
The end of the cold war seems to have freed up modest resources in money and political commitment that have benefited disabled people in areas of universal design and orphan technology. The development of international technical standards (stimulated by industry in the United States) and the establishment of the World Wide Web Accessibility Initiative for universal telecommunications design (stimulated by the U.S. government and a Canadian-based foundation) are interesting examples (R. Cooper, personal communication, 1999). Both are international in scope.
In earlier sections of this chapter, researchers and users from a number of countries, including Judy Heumann, Rolf Hotchkiss, Lars Augustsson, Alan Newell, and Egidio Ballabio, expressed interest in technical standards development and related issues of market viability, user involvement, consumer choice and relationships, and roles of consumers with professionals. The development of standards for wheelchairs is an interesting use of a policy tool—standards to address an international need shared by consumers, researchers, providers, and industry.
According to Douglas Hobson of the NIDRR Rehabilitation Engineering Research Center on Wheeled Mobility at the University of Pittsburgh, the U.S. wheelchair industry became involved in the development of wheelchair standards in the 1970s (D. Hobson, personal communication, 1999). Industry wanted to be competitive with Europe but lacked the financial support for standards that would make them competitive in domestic and international markets. Early in the 1980s, at the request of industry, RESNA became involved and was designated by the American National Standards Institute (ANSI) as the official U.S. standards development body in the area of disability products. The ANSI/RESNA standards group serves on the delegation of the International Standards Organization. According to Hobson, standards were developed to meet the following purposes: safety, durability, standardized consumer product information, compatibility between products, and participatory forums. These standards also minimized border trade barriers for both imports and exports. Rory Cooper, an engineer at the Human Engineering Research Laboratories, also at the University of Pittsburgh, has often noted that the drive by users to improve sports performance through lighter-weight equipment continues to revolutionize the wheelchair industry and will lead to reduced costs and improved quality (Cooper et al. 1997).
Standards development provides an example of the role of government in partnership with and support of professionals and users to reach a shared goal. The U.S. effort has received indispensable government support initially from the Veterans Administration and later from NIDRR. Standards development illustrates the use of R&D funds to support social integration, albeit in a health product marketplace. Finally, the development of wheelchair standards shows the importance of involvement by disabled interests in domestic and international science and technology activities. According to Hobson, wheelchair technology has been at the leading edge of the standards development in assistive technology. Other areas of assistive technology are making significant progress. He cites computer access and telecommunication guidelines and standards, which serve as the final example in this section (D. Hobson, personal communication, 1999).
World Wide Web Accessibility Initiative
Exhibiting considerable political sophistication, the disability community enlisted both the White House and powerful nongovernmental agencies to discuss the need for an industry initiative in telecommunications. The U.S. National Economic Council and the Yuri Rubinsky Insight Foundation arranged for a meeting at the White House in January 1997. The intent was to bring together key players in the industry, academia, and government. Gregg Vanderheiden, a principal investigator of an NIDRR-funded engineering center, was again instrumental to a technical presentation of the need for an international effort. As a result, NIDRR and the National Science Foundation funded the World Wide Web Accessibility Initiative (WAI) concept through a grant-making process. The Worldwide Web Consortium, a consortia of the world’s largest telecommunications companies, hired Judy Brewer, an NIDRR-funded director of the Massachusetts Technology Act project who is disabled, as the director of the International Program Office.
The WAI was established in 1997 with the support of the United States, Canada, and the European Union. The WAI is an International Program Office of the World Wide Web Consortium (W3C). The W3C, housed in three internationally recognized research facilities, coordinates the evolution of the Web, and its mission is the realization of the full potential of the Web, including leadership to remove accessibility barriers. The purpose of the WAI is to coordinate five Web-related program activities: technology development, development of tools, guidelines for use of the technology, educational outreach and research, and advanced development. Recently, the W3C/WAI issued Web accessibility guidelines. In its grant proposal, the W3C acknowledged additional motivation to build accessibility into the Web’s infrastructure, citing requirements in U.S. and potential European national laws that might extend into a pan-European framework and could be considered for adoption worldwide (National Science Foundation and Massachusetts Institute of Technology 1997). The ADA; Section 508of the Rehabilitation Act; Sections 255, 256, and 305/713 of the Telecommunications Act; and the Television Decoder Circuitry Act were cited. The W3C argued that there was a “clear and compelling social argument” for undertaking this work, but it is also good business because it opens new markets and creates new products, including disability and those who cannot read.
Future Agenda and Conclusions
Irving P. Schloss (1976), whose quote introduced this chapter, recognized the important role of government for one minority group—disabled people. He recognized that science and technology law would guide policy and decisions about research and development resource allocations. Perhaps he recognized that the science and technology enterprise was characterized by semiautonomous governance structure and decisions made by experts. He seemed to imply that law that does not specify disabled people might be law that would not incorporate their issues and enlist their participation. This chapter suggests that he was largely correct.
Schloss (1976), however, did not take the measure of a great countervailing force, the international human rights and domestic civil rights movements. As this chapter has documented, people’s movements have strongly affected democratic legislatures, which, in turn, have legislated in areas that affect mainstream science and technology policy. Future policy research must further address the adequacy of national science and technology law and institutions to incorporate the interests of disabled people. Future policy research must also recognize that increasingly, R&D expenditure is shifting to the private sector and that the disability research community must be concerned with what is going on in the private sector. The nature of applied science and engineering will present continuing challenges within the global, nation-state, and economic frameworks.
The Nature of Science
The section on the nature of science suggests that assumptions about the basis for truth in the West, either objective or subjective, and the standard of normalcy create a predisposition for judgment that may adversely affect disabled people. Future research in the philosophy and sociology of science should probe the impact on the choice of research problems and design of widely accepted assumptions in applied science and engineering. What is the impact on applied research problems of assumptions in the basic sciences that knowledge precedes social construction or that the norm automatically informs understanding of any class of individuals and design features of their environments?
It is not widely recognized that R&D has a particularly intimate relationship to the lives of disabled people, especially their lives as citizens. For example, availability of technology for speech output within a universally designed information kiosk at the voting booth eliminates the intermediary that blind people must use to read ballots. Technology design may trade off choice or basic freedom for efficiency or a range of options. Engineering and sociological research on the design process in medical, social, and systems technology is long overdue.
The roles of the researcher and the end user deserve attention. At the research project level, for the technical researcher, scientific values are preeminent. The research process must be intergenerational and the hypothesis refutable. While the user is concerned about the reliability of the product, user concerns often relate to choice of relevant research problems and the design of technology that can be used in actual settings where they live, learn, and work. The power relationships between researchers and users are complex and cannot be solved ideologically. Risk analyses studies are needed to address the various factors involved in participation in research projects. Questions about who and how funding decisions are made deserve attention. They involve levels of analysis from local to international and units of analysis that include many institutions of government and the private sector. Power relationships might also be eased if career pathways are opened. There is a great need to probe the incentives and disincentives for disabled people to pursue science and engineering careers.
Clearly, support for the complex research characterized by most research and development could be diversified so that some funds could be committed to community-based research that shifts the power relationship more to the user. However, debate has been reignited in works such as the Donald E. Stokes’s (1997) book, Pasteur’s Quadrant, about whether there are real distinctions between basic and applied research. Applied research and often a problem-solving orientation are germane to people who have diverse functional characteristics (Stokes 1997).
The historical perspective has provided a tale about the great forces of history, including wars and scientific innovation, that have generated a series of models on which the authority of science is based. History also provides a perspective on the significance of these models for disabled people. The expertorpr of essional model was dominant throughout most of the cold war period. The citizen participation model made a brief entrée in the 1960s. The economic model appears to have become dominant and to hold promise for possible social investments. The economic model suggests the need for further research on incentives and disincentives for large corporations to incorporate design for all features in their products. Future research should explore the citizen participation model and tools developed by environmentalists, such as social impact assessment, to ascertain applicability to disability. The importance of social movements to science and technology policy is an important research item. History tells stories of mobilization of great investments of research and development resources to provide for defense and for veterans. In contrast, even in the postcold war period, minimal resources have been invested in the infrastructure needs of civilians. Disabled citizens, in particular, are interested in research and development investments for universally designed transportation, buildings, telecommunications, and consumer products. Demographic trends should be researched as a possible rationale for identifying needs in the postcold war period.
History has also told tales of lack of science and technology development in the world’s poorest countries. The disability population in these countries does not have the benefit of big science. Research could address short-term and long-term science and technology needs for these countries. Necessarily, some of this research should profile health, education, and culture. While economic development models based in the resources and culture of these countries are very important, models may also be considered that guide these countries in the development of the complex infrastructure that supports modern science and technology.
Public Policy and Markets
The science and technology enterprise, like the human rights movement, is inherently international. Unlike international human rights, science and technology decisions are influenced by economic factors and made by the private sector. Yet, authoritative decisions about science and technology resources—support for research, commercialization, and training—also repose in governments. With the end of the cold war, there appeared to be a shift to an open information service model. The model has been eroded by the commercialization of the Internet. Nonetheless, the significance of the model as amended for disabled people should be the subject of research. Will it contribute to further differentiation between health policy and other policy that provides support for social integration? What are the appropriate incentives to stimulate markets? Large companies will be interested in “add-ons” for accessibility only insofar as tax credits and regulation inspire them to do so. Small companies require their own incentives to produce and upgrade orphan products. To what extent will international cooperation create robust markets and increase availability and variety of products? What funding mechanisms are available for individual consumers in the various countries to purchase technology for higher-level functioning?
Nongovernmental organizations (NGOs), especially international NGOs, must add science and technology to their social agenda and work with technical associations such as RESNA, AES, and AAATE. Studies of organizational behavior are needed both domestically and in the international arena. There is a need for research to develop models of culturally appropriate science and technology infrastructure for developing countries that will allow these countries to compete in the global marketplace and bring benefits to bear on independent living needs of their disabled and elderly populations.
As with indigenous peoples, science and technology take their toll on the disabled cultures. For example, culturally deaf people often oppose cochlear implants; hard-of-hearing and late-deafened people look to technology for relief from impending deafness. Studies might explore the conditions under which acceptance or rejection of an implant might empower disabled people.
Research and development figures are not easily extrapolated from domestic budgets. These figures must be analyzed to ascertain national and international investments in accessible transportation, telecommunications, built environments, and consumer products as well as in medical rehabilitation and health.
There is a critical need to identify incentives to enhance democratic representation and participation of people with diverse functional characteristics. As history unfolds and science and technology increasingly become the basis of political power, democracy is challenged to modernize institutions. As this chapter has shown, marginalized groups and citizens who may not have political power because their interests may be separate from, or incompletely shared by, the majority are at risk of being barred from citizen activities. Special resources should be made available to provide scientific expertise, incentives for career development, and institutional participatory mechanisms so that disabled people are motivated and enabled to participate. In market-driven economies, disabled people may lack a socioeconomic net that will allow them to pursue advanced education and acquire skills with which to compete in a technologically based society.
Discrimination against disabled people in science and engineering is deeply embedded in scientific values, infrastructure, career paths, and policy. The research efforts of many disciplines must be brought to bear on the multiple problems discrimination has bred.