Beyond Participation: Empowering People with

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Accepted: July 15, 2018. Address correspondence to Rebecca ... Society of North America (RESNA) assert that “no. AT or RE [assistive technology or ...
Technology and Innovation, Vol. 20, pp. 133-139, 2018 Printed in the USA. All rights reserved. Copyright © 2018 National Academy of Inventors.

ISSN 1949-8241 • E-ISSN 1949-825X http://dx.doi.org/10.21300/20.1-2.2018.133 www.technologyandinnovation.org

BEYOND PARTICIPATION: EMPOWERING PEOPLE WITH DISABILITIES IN RESEARCH AND DESIGN Rebecca Monteleone School for the Future of Innovation in Society, Arizona State University, Tempe, AZ, USA

This commentary piece discusses the importance of engaging with emancipatory and empowering research methods when designing technologies for individuals with disabilities. The piece outlines historical research methods, identifies current orientations toward participatory research in assistive and rehabilitative technology research and design, and provides theoretical context justifying the need to move beyond the rhetoric of “participation.” Key words: Participatory design; Assistive technology; Disability technology; Emancipatory research methods

INTRODUCTION Scholars and organizations dedicated to assistive technology design and deployment have consistently and vocally made commitments to user-centered or person-centered research and design. The Guidelines and Priorities for Assistive Technology and Rehabilitation Engineering Research of the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) assert that “no AT or RE [assistive technology or rehabilitation engineering] research should be conducted without at least some direct consumer involvement” (1). Despite this, there is little consensus on how, when, or to what extent users should be involved in design (1). Further, few studies on assistive technologies draw on well-established participatory methods, let alone incorporate people with disabilities more holistically into their research teams (2). People with disabilities are often represented by flat, essentialized personas whose needs and desires are assumed on the basis of

their disability status, obscuring the heterogeneity of the disability community. If participatory methods are incorporated, they often occur downstream in the design process, where only cosmetic or superficial changes are made. Disability is a cross-cutting condition that impacts people of all races, genders, sexualities, and nationalities, meaning that diagnostic category provides only a sliver of relevant information when designing socially valid assistive technology. People with disabilities have historically been stigmatized, their views delegitimatized, and their bodily autonomy compromised through traditional research methods (3,4). Researchers and engineers working on assistive technologies therefore stand at a precipice, with a choice to either perpetuate stereotypes and disenfranchising practices against people with disabilities or challenge prejudicial paradigms by incorporating their potential end-users in holistic, emancipatory ways (5). Further, it is insufficient to integrate the perspectives of users with disabilities through downstream focus groups and half-hearted

_____________________ Accepted: July 15, 2018. Address correspondence to Rebecca Monteleone, School for the Future of Innovation in Society, Arizona State University, PO Box 875603, Tempe, AZ 85287, USA. E-mail: [email protected]

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participatory strategies; instead, it is necessary to reconceive expertise, research practices, and design teams to create technologies designed, in part, by their end-users. This commentary will justify the need to reconceive how people with disabilities are incorporated into research and design teams by briefly touching on historical subjugation, current design practices, and theoretical underpinnings. It will then provide some recommendations for holistic inclusion and emancipatory research practices. For the purposes of this argument, disability is understood neither as an innate, internal human condition nor strictly as a site of social oppression (6). Rather, Garland-Thomson asserts that disability can be understood as what “occurs when the shape and function of bodies come into conflict with the shape and stuff of the world” (7). Assistive technologies, in this context, ameliorate those conflicts at the interface between self and environment. This perspective on disability attempts to address critiques of both the medical model and the social model of disability. The former views disability as an impairment or pathology located within an individual body, which ignores the social dimensions of difference and threatens bodily autonomy through paternalistic biomedical interventions (3,8). The social model recognizes the social and political nature of disability, asserting that systemic barriers to access and inclusion — both social and material — are responsible for disablement. Disability is defined by its social and political context rather than by an individual body. This model, however, may inadvertently delegitimize experiences of bodily impairment and individual desire for medical intervention (9). A third model, which Tobin Siebers dubs “complex embodiment,” validates both disabling social and political environments and embodied factors impacting disability, such as chronic pain and aging. To avoid the pitfalls of the medical model, he writes that the embodied elements of disability are “neither less significant than disabilities caused by the environment nor to be considered defects or deviations merely because they are resistant to change. Rather, they belong to the spectrum of human variation… and they need to be considered in tandem with social forces affecting disability” (10). Additionally, a critical realist perspective of disability, in part influenced

by Shakespeare, has been introduced into assistive technology theory and design, with the goal of understanding disability in an interactional manner and considering “the physical, the biological, the psychological, the cultural, and the normative at the same time in meaningful ways” (11,12). This author draws on both complex embodiment and critical realism to recognize disability as contingent, situated, and fluid, making the integration of people with disabilities into the assistive technology design process critical to identifying relevant research questions and producing socially valid technologies. INVISIBLE HISTORY For much of history, technologies were designed without people with disabilities in mind, alluding to a social, political, and scientific culture that rendered them invisible. People for whom technologies were unavailable were forced to adapt to both a material world and a culture that devalued their diverse bodies and minds. It is important to understand that inaccessible technologies reproduce and perpetuate social and political paradigms, and Winner suggests they must be evaluated not only for their “contributions to efficiency and productivity…but also the ways in which they embody specific forms of power and authority” (13). The advent of the disability rights movement in the U.S. resulted in legal protections such as the 1973 Rehabilitation Act and the Americans with Disabilities Act, both of which bar discriminatory and inaccessible technologies under certain conditions. Making exclusion illegal, however, does not make technologies explicitly inclusive. The Assistive Technology Act of 1998, which established research and demonstration centers, national networks, and advocacy services for designers and users of assistive technology, provided a new perspective on the value of assistive technology. Despite this breakthrough, there was still little explicit commitment to putting users with disabilities at the center of the design and research process. Ripat and Woodgate, drawing on a wealth of disability theory, claim research, including research in assistive and rehabilitative technologies, is a “dominant means of upholding and perpetuating oppressive and discriminatory practices” and serves to “create further disablement by alienating those researched from the



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process of research” (2). Legal protections have done little to address deeply embedded cultural prejudices. Looking to research outside of the engineering space, there have been long histories of subjugation and dehumanization of people with disabilities. Biomedical research has long exploited vulnerable populations as unwitting research subjects, such as the intentional exposure of viral hepatitis to children with disabilities at Willowbrook State School until 1972 (the same year as Geraldo Rivera’s blistering exposé of the school’s systematic abuses) (14). In social science research, Oliver claims researchers have dehumanized their subjects, divorcing their responses from their experiences (4). This process essentially takes knowledge from people with disabilities, repackages it, and presents it back as expert guidance. Knowledge, taken from its individual context, then enables individuals without disabilities to make decisions on the behalf of those with disabilities. To exacerbate this tendency, people with disabilities rarely have the opportunity to occupy the researcher role, reinforcing paradigms that undermine their knowledge contributions (4). The above history provides context for why it is imperative to include individuals with disabilities in the research and design process; any other alternative perpetuates a history of discrimination, subjugation, and invisibility. THEORETICAL JUSTIFICATION FOR EMANCIPATORY RESEARCH Assistive technologies do not exist in a vacuum but must be fully integrated into the social, political, and material realities of a user. One imperative reason for the inclusion of diverse voices throughout the research process is to recognize that disability is not simply a biomedical condition but a social and political identity. As Taylor writes, “the body is both a biological fact and a cultural artifact[,]” and privileging the biological — an often inadvertent consequence of developing individual assistive technologies — obscures the oppressive and discriminatory social structures that delegitimize and devalue people with disabilities (15). The incorporation of people with disabilities on research teams provides an opportunity to weigh the social and material equitably.

Reliance on biomedical understandings of disability — often core to the development and validation of assistive technologies — risks medicalizing disability. Medicalization is “defined as the processes through which aspects of life previously outside the jurisdiction of medicine come to be construed as medical problems” (16). Clarke and colleagues further distinguish “biomedicalization,” which refers to the “increasingly complex, multi-sited, multidirectional processes of medicalization that today are being both extended and reconstituted through emergent social forms and practices of a highly and increasingly technoscientific biomedicine.” Under this paradigm, difference becomes pathologized and therefore treatable or preventable, and obtaining a healthy, idealized body becomes a moral imperative (17). More importantly, medicalization (and its descendent biomedicalization) obscures social and political systems that discriminate against and devalue people with disabilities. By ascribing disability to biological and technologically detectable conditions, physical arrangements such as inaccessible buildings and technologies, social systems such as entrenched ableist attitudes, and political barriers such as weak, unenforceable rights-based legislation become sidelined, privileging the development of cure-based technologies and practices. By utilizing the lived expertise of people with disabilities in the design and deployment of assistive technologies, design and research teams can avoid relying on biomedicalized models of disability and, instead, develop holistic, socially valid technologies. The ability of diverse research teams to leverage their differing perspectives can be attributed to the feminist epistemological concept of standpoints. Standpoint epistemology, a core concept in feminist scholarship, provides an approach to knowledge production that “meticulously reflects on the location of the knower” (18). Some scholars also claim the perspective, or standpoint, of individuals in oppressed or devalued roles is epistemically privileged. Essentially, standpoint theory suggests that individuals occupying different social roles have different knowledges due to their positions — with the caveat that individuals occupying roles that are not privileged may have access to knowledge that people not occupying those roles do not have access to. The context in which

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assistive technologies are designed and used is crucial, and diverse, embodied knowledges are essential for understanding that context fully. Unfortunately, people with disabilities, along with other groups occupying stigmatized or devalued roles, are, based solely on their disability status, often seen as less capable of contributing knowledge (19). It is essential for engineers and researchers of assistive technology to recognize and resist prejudicial conceptions of disability and people with disabilities. CURRENT ORIENTATION Participation by potential end-users has been a topic of interest among assistive technology researchers for some time (9,12,20). Assistive technology designers and researchers who have critically engaged people with disabilities in their work have cited that it has impacted their perspectives in design and evaluation (12). However, there is little agreement on what participation means and how to achieve it meaningfully, let alone consensus on methods of empowerment and co-design techniques. Halskov and Hansen, conducting a systematic review of a decade of research papers presented at the Participatory Design Conference, an interdisciplinary conference with a focus on, among other subjects, human-computer interaction (HCI), identified a diverse understanding of the very concept of “participation” (21). They identify three broad definitions of participation in the papers reviewed, including implicit inclusion (mode of participation undefined), inclusion of users’ points of view (a mode that recognizes users as experts of their lives), and mutual learning (a mode that emphasizes transfer of knowledge) (21). They also highlight complexities and tensions in the application of participatory design, such as who participates and how they participate. Vines and colleagues identified five issues that need to be addressed when considering participation in design, which are echoed in Halskov and Hansen’s 2015 review (22). These include accurately mapping definitions of participation, identifying best practices, reflecting on researcher and participant experience, questioning intellectual property conventions, and calling for transparent justification for choosing participants. While both articles call for robust theoretical foundations for participatory

design in assistive technology research and development, thus far the project has not been taken up in earnest. Mankoff, Hayes, and Kasnitz also grapple with the difficulties of engaging participants with disabilities in research design but note that, from a disability studies perspective, “designers have a responsibility not to marginalize atypical users” and thus must critically engage with new methods of participation in research (9). They present several alternative approaches to costly and ineffective accessibility strategies, including deeply engaging with a single member of the end-user population throughout the research process in order to share experiences and knowledge and “surface tacit false assumptions, which are self-evident to the representatives but may not be obvious to designers” (9). Seekins and White grapple not with the practice but the purpose of participatory research in applied disability and rehabilitation science in their 2013 paper, ultimately claiming the primary purpose is to reduce threats to social validity. In their estimation, participatory methods “involve[] judgements of the importance of research goals, the acceptability of procedures, and the significance of impact by those expected to use its results or to benefit from them” (23). While this author recognizes social validity as a key benefit emerging from engagement with people with disabilities, it does not capture the extent to which people with disabilities can contribute embodied knowledge and expertise to the design and validation process. Despite a lack of consensus about the nature of participation, assistive technology researchers have independently developed meaningful engagement with people with disabilities — many in processes that this author would argue are not simply participatory but emancipatory. For example, Frauenberger’s “OutsideTheBox – Rethinking Assistive Technologies with Children with Autism” deeply engaged with a small group of children over an extended period of time with the intent to co-design individualized smart objects through collaborative exploration (12). While Frauenberger refers to this project as “radically participatory,” its focus on empowerment, exchange of experiences, and empathy align it with an emancipatory research paradigm that extends beyond simple participation (24). Metatla and colleagues’ 2015 study



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is also an example of meaningful participation, one involving a series of iterative design workshops with participants with vision impairments (25). Their study utilized a set of tools thoughtfully selected to make the design process accessible, including audio-tactile mockups and audio diaries. However, the authors still distinguish between designers and participants (with disabilities), suggesting the people engaged in the workshop were not considered members of the design team but guests invited to share experiences. While these examples exemplify a movement toward emancipatory, empowering, and person-centered assistive technology design, they remain relatively rare. Further work is needed to institutionalize emancipatory engagement and research in assistive technology research. RECOMMENDATIONS This commentary has sought to justify the need for diverse research teams that move beyond token participatory methods when designing and validating assistive technologies. First, it is necessary to reconceive how and to what extent people with disabilities — potential users — engage with the design of assistive technologies. As the title of the commentary suggests, it is necessary to move beyond the rhetoric of “participation” toward more meaningful, holistic inclusion of people with disabilities into research and design of assistive technologies. Ripat and Woodgate call explicitly for emancipatory disability research that focuses on reciprocity, emancipation, and empowerment in the research apparatus, society, and political arena (2). In their words, “assistive technology researchers need to collaborate with disabled people as co-researchers and provide them with opportunity to empower themselves through knowledge and capacity building. Researchers need to answer the questions that are meaningful to the disabled community, enable disabled people to create the research agenda, and simultaneously support efforts to address oppressive environmental barriers” (2). They suggest educating both researchers and disability providers on varied models of disability that move beyond individualistic, medicalized paradigms. Further, they call for a reframing of the rhetoric used to discuss provision of assistive technologies. For example, this commentary earlier referred to assistive

technology as a method of amelioration between a body and its environment. This understanding of assistive technology focuses not on correcting a deficient body but on addressing a mismatch between person and environment. Additionally, Ripat and Woodgate advocate for researchers to contextualize their designs to consider how their end-users interact with society more broadly. Conducting emancipatory research, however, is not as simple as following a set of prescribed steps. Rather, one can identify emancipatory research not by how it is done but by what it accomplishes. Like Ripat and Woodgate, Zarb distinguishes emancipatory research as being empowering and reciprocal (2,5). Importantly, participation is necessary, but not sufficient, for engaging in emancipatory research. Emancipatory research’s transformative power emerges from “learn[ing] how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose” [emphasis original] (26). Further, emancipatory research sheds light on critical quandaries such as who controls the research agenda, who has the opportunity to critique research, and what becomes of the products of research (5). Barton suggests that the purpose and outcomes of research are as important to determining its emancipatory nature as the method by which it is accomplished (27). Research must be both relevant and useful for the intended population, a benchmark that can only be assessed when research projects are designed with their potential end-users’ input. While the processes of conducting emancipatory research are rather ill-defined, Zarb provides a set of questions for researchers to critically evaluate their work (5). These include asking who determines how research is conducted and to what end, how people with disabilities are engaged in the research process, what opportunities are available for people with disabilities to set research agendas, and who controls the products of research. Armed with these guidelines and a commitment to inclusive work, assistive technology researchers are well-equipped to transform disability research. The paradigm shift articulated by Ripat and Woodgate and endorsed here requires more than simply understanding the social dimensions of disability — and, by extension, disability technologies.

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It also requires developing richer, more nuanced definitions of knowledge(s) and building research spaces in which those knowledges can be expressed and valued. Research and development should challenge traditional paradigms and research processes, interrogate their ableist underpinnings, and upend practices that perpetuate the invalidation of the voices of people with disabilities. Moreover, pathways into careers in science, technology, engineering, and math for people with disabilities need to be thoughtfully and purposively constructed so that their functions on research teams can be as varied as the heterogenous disability experience. Further, if traditional participatory methods are employed, they need to be integrated as far upstream as the constraints of the project allow. Potential end users provide more than just approval on whether a system or design will be socially valid; they should be articulating which questions researchers seek to answer in the first instance. Developing diverse design teams does not only address issues of discrimination and social validity but also provides engineers with essential knowledge to develop relevant, usable assistive technologies. Further, as Ripat & Woodgate state, “AT developers are faced with the challenge of creating technology that supports and empowers individuals rather than generating additional dependence and oppression,” positioning engineers as essential players in creating a more just social system that values all abilities (2). ACKNOWLEDGMENTS The author’s research is partially supported by the National Science Foundation under Grant No. 1069125. The author would also like to extend her gratitude to the peer reviewers who provided critical and insightful feedback in the development of this piece. REFERENCES 1. RESNA guidelines and priorities for assistive technology and rehabilitation engineering research. Arlington (VA): Rehabilitation Engineering and Assistive Technology Society of North America; 2014. [accessed 19 December 2017]. http://www.resna.org/sites/ default/files/‌legacy/library/‌docs/RESNA%20

Research%20Guidelines_February%202017.pdf. 2. Ripat J, Woodgate R. Locating assistive technology within an emancipatory disability research framework. Technol Disabil. 2011;23(2):87-92. 3. Wendell S. Toward a feminist theory of disability. Hypatia. 1989;4(2):104-124. 4. Oliver M. Changing the social relations of research production? Dis Han Soc. 1992;7(2):101-114. 5. Zarb G. On the road to Damascus: first steps towards changing the relations of disability research production. Dis Han Soc. 1992;7(2):125138. 6. Oliver M. The politics of disablement: a sociological approach. London: Macmillan; 1990. 7. Garland-Thomson R. The case for conserving disability. J Bioeth Inq. 2012;9:339-355. 8. Brisenden S. Independent living and the medical model of disability. Dis Han Soc. 1986;1(2):173178. 9. Mankoff J, Hayes GR, Kasnitz D. Disability studies as a source of critical inquiry for the field of assistive technology. In: Proceedings of the 12th international ACM SIGACCESS Conference on Computers and Accessibility; 2010 Oct 25-27; Orlando, FL. New York (NY): ACM; 2010. p. 3-10. 10. Siebers T. Disability and the theory of complex embodiment: for identity politics in a new register. In: Davis L, editor. The Disability Studies Reader. 5th ed. New York (NY): Routledge; 2016. 313-332. 11. Shakespeare T. Disability rights and wrongs revisited. 2nd ed. Oxon (England): Routledge; 2014. 12. Frauenberger C. Disability and technology: critical realist perspective. In: Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility; 2015 Oct 26-28; Lisbon. New York (NY): ACM Press; 2015. p. 8. 13. Winner L. The whale and the reactor: a search for limits in an age of high technology. Chicago (IL): University of Chicago Press; 1986. 14. Paola F, Walker R, LaCivita Nixon L. Medical ethics and humanities. Sudbury (MA): Jones and Bartlett Publishers; 2010. 15. Taylor S. The right not to work: power and disability. Monthly review: an independent socialist magazine. 2004;55(10).



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16. Clarke A. Biomedicalization technoscience, health, and illness in the U.S. Durham (NC): Duke University Press; 2010. 17. Armstrong D. The rise of surveillance medicine. Sociol Health Ill. 1995;17(3):393-404. 18. Lykke N. Feminist studies: a guide to intersectional theory, methodology, and writing. New York (NY): Taylor and Francis; 2010. 19. Goffman E. Stigma: notes on the management of a spoiled identity. New York (NY): Simon & Schuster; 1963. 20. Hornof AJ. Designing with children with severe motor impairments. In: CHI ’09: Proceedings of the 27th International Conference on Human Factors in Computing Systems; 2009 Apr 4-9; Boston, MA. New York (NY): ACM; 2009. p. 2177-2180. 21. Halskov K, Hansen N. The diversity of participatory design research practice at PDC 2002-2012. Int J Hum-Comput St. 2015;74:81-92. 22. Vines J, Clarke R, Leong T, McCarthy J, Iverson OS, Wright P, Oliver P. Invited SIG – participation and HCI: why involve people in design? In: Proceedings of the 2012 ACM Annual Conference Extended Abstracts on Human Factors in

Computing Systems. 2012;1:1217-1220. 23. Seekins T, White G. Participatory action research designs in applied disability and rehabilitation science: protecting against threats to social validity. Arch Phys Med Rehab. 2013;94(1):S20-S29. 24. Oliver M. Emancipatory research: realistic goal or impossible dream? In: Barnes C and Mercer G, editors. Doing Disability Research. Leeds (UK): The Disability Press;1996. p. 15-31. 25. Metatla O, Bryan-Kinns N, Stockman T, Martin F. Designing with and for people living with visual impairments: audio-tactile mock-ups, audio diaries and participatory prototyping. CoDesign. 2015;11(1):35-48. 26. Oliver M. Post-positivism, paradigms, and power: disabling research or researching disability? Paper presented at: International Symposium, Social Research about Disabilities: Setting the Research Agenda for the 1990s; 1990. p. 14. 27. Barton L. Emancipatory research and disabled people: some observations and questions. Educ Rev. 2005;57(3):317-327.