Kateřina Kolářová, Ph.D., is Assistant Professor of Cultural Studies in the Department of Gender Studies, Charles University, Prague. She may be contacted at: email@example.com or at: firstname.lastname@example.org.
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Smith, R. (1996, January 6) Bob Flanagan, 43, Performer who fashioned art from his pain, New York Times. Retrieved from http://www.nytimes.com/1996/01/06/arts/bob-flanagan-43-performer-who-fashioned-art-from-his-pain.html Endnotes
I work with Jay Wiseman’s definition of S/M: “SM is the use of psychological dominance and submission, and/or physical bondage, and/or pain, and/or related practices in a safe, legal, consensual manner in order for the participants to experience erotic arousal and/or personal growth” (as cited in Bauer, 2005, p. 75). On the relationship between sadism and masochism, see the enlightening discussion by Gilles Deleuze (1989) in Venus in Furs, and Coldness and Cruelty. On Bob Flanagan’s use of S/M see also Erica Meiners, (1999).
2 For an articulation of the relationship between the disability and crip politics, as well as between queer and crip see McRuer (2006, 2003)
3 In 1994, Visiting Hours was installed also in the New York MOMA. It is worth noting here that most of Flanagan and Rose’s works had the character of onstage performances.
4 The reference to Christ and crucifixion is – of course – acknowledged and fully intended.
5 See also e.g., Bendelow & Williams (1995), Cassell (1992), Morris (1991).
6 Flanagan himself makes a conscious distinction between the bodily pain/discomfort experienced as a direct cause of his medical condition and the pain experienced and staged in their S/M plays, suggesting clearly that he and Rose understand the performances as a part of the recontextualizing strategy (Juno & Vale, 1993).
7 Conceptualizing the body as situational and as contextually contingent is important here while it precludes the risk of absolutism and false and shallow optimism. If I am trying to imagine and interpret Flanagan’s body as “body in situation” which would allow for accentuating the various strategies of negotiating of the body’s sensations, I am in no way trying to postulate that Bob Flanagan’s body is no longer pained through CF. Neither should this essay be read as in any way belittling this difficult aspect of Flanagan’s (and Rose’s) life with disability.
8 See also McRuer’s (2006) intriguing reading of Flanagan’s “Why?”McRuer reads it as a part of Flanagan’s gesture toward new/different future temporality of the crip (pp. 183-194).
Disability by Design
Elizabeth DePoy, Ph.D. & Stephen Gilson, Ph.D.
University of Maine
Abstract: Given the primacy of global economics and marketing mind-sets, this article interrogates disability as a phenomenon of design and branding. We begin by briefly reviewing relevant design and branding concepts, proceed to apply them to the creation of a disability identity and set of responses, and then demonstrate the power of design and branding as subversive or facilitative of advancing transformative global inclusion and human rights.
Key Words: identity, design, branding, disability
Over the past decades, definitions and understandings of disability have expanded and increased in complexity. Looking beyond medical diagnosis as the defining element of disability, disability studies has brought important interdisciplinary thinking from humanities, arts, social science, and natural science fields to bear on interrogating, explaining, and guiding responses to disability. It is therefore curious that given that design, branding, and marketing take center stage in the 21st century, these important contemporary lenses have not been vigorously applied to analyzing and responding to disability. In this paper, we suggest that a synthetic lens of disability studies, design, marketing and branding scholarship provides a potent scaffold for the analysis of disability and for crafting meaningful intellectual and social change in an advanced capitalist world (Habermas, 1973).
As an initial departure from the impairment approach or what we refer to as the medical explanation for disability, scholars and disability activists in the late 1970s posited the social model of disability. This model countered medical explanations by suggesting that those with atypical bodies were the objects of social and cultural discrimination and exclusion (DePoy & Gilson, 2004). By bodies we refer to the broad corporeal as well as experiential elements of humans, including but not limited to the physical, social, economic, intellectual, expressive, spiritual, and emotional human. The introduction of the social model of disability was an important initial impetus in conceptually relocating disability away from medical deviance into the discourse of human construction, diversity, and discrimination. However, an unintended consequence of this theoretical shift was the creation of a multitude of opposing explanations which DePoy and Gilson (2004) classified into two overarching explanatory categories: medical-diagnostic and constructed. This binary fractured the study of disability (Siebers, 2008; Albrecht, 2001) polarizing disability scholars from one another and from disability professionals whose domain is the provision of services. In an effort to end the conceptual duel, Depoy and Gilson (2004; 2008) advanced an axiological lens through which to understand disability. The lens parses category formation and response to category members into three overlapping modes: description, explanation, and legitimacy. What is considered a legitimate disability and viable responses are determined through a complex set of value judgments on multiple explanations that are posited for the atypical, and which can inhabit the same explanatory space as friends or foes. This axiological framework provides a discourse platform on which many explanations can be laid and then examined for their legitimacy in locating explanations within the category of disability and engendering the concomitant responses that are bestowed upon category members. One explanation that only recently has entered disability discourse and thus is nascent and ripe for intellectual development (Riley, 2007) is what we have named “disability by design.”
What is Design?
Design is a complex construct that has been increasingly used to describe abstract and concrete human intention and activity, and to name a property of virtual, physical, and even abstract phenomena. As reflected in its diversiform definitions, design emerges in multiple disciplines including art, architecture, computer programming, fashion, business, and marketing just to mention a few. While the term, its many homes, and its implications are diverse, what is evident in the contemporary use of the term is the broad scope of phenomena to which design applies, including but not limited to the activities of conceptualizing, planning, creating, and claiming credit for one’s ideas, products, and entities as well as the inherent intentional or patterned characteristics of bodies, spaces, and ideas (Munari, Eames, Eames, Guixe, & Bey, 2003; Margolin, 2002). Of particular note is the contemporary commonality in all definitions of design as purposive and intentional. That is to say, design is not frivolous but rather is powerful, political, and is both shaped by and shapes notions of standards, acceptability, membership, and desirability (Munari, Eames, Eames, Guixe, & Bey, 2003; Foster, 2003). What is Branding?
In contemporary western economies, design is closely related to branding. Given the emergence of branding from the fields of marketing and advertising, brands within this conceptual framework are defined as the purposive design and ascription of logos or markers to a product for the intent of public recognition, addition of value, and consumption. Of particular importance to our analysis is the construct of value-added. Interpreted broadly, the addition of value does not necessarily imply an increase or elevation, but denotes inscription of value that can span the continuum from extremely pejorative to most desirable (Lusch & Vargo, 2006). Throughout the article, we use the terms value-added and de-value added to clarify positive and negative valuation respectively. More recently, scholars have expanded their definitions and analyses of branding beyond the purpose of product recognition and profit. This enlarged scope has positioned branding as a mechanism that commodifies and reciprocally represents and shapes value, ideas, identities, or even cultures (Lusch & Vargo, 2006). Brands are design stories that unfurl and take on meaning as they are articulated and shared by multiple creators and viewers. Because symbolism and dynamism both inhere in branding, Holt (2004) has suggested the term cultural branding, which denotes the elevation of brands to the status of icon, marker of identity, and idea. While Holt’s term is relatively new, the notion of branding as definitive of one’s cultural, social, and individual identity--and of one’s comparative social worth--was originated in the early and mid 20th century by thinkers such as Horkheimer, Adorno, Noerr, and Jepgcott (2002) and McKluhan and Fiore (2005). Although divergent in ontology and scope, these scholars were seminal in introducing branding as a symbolic means to assemble and project identity. Through the process of choosing and adopting cultural iconography in the form of products, fashions, food, music, and so forth, one ostensibly defines the self and displays value to others (Holt, 2004). Classical theory suggested that consumers followed a logical sequence of identity branding: (1) selecting a brand from a menu of options, (2) adopting, and (3) displaying the brand to reflect one’s identity. Contemporary literature reveals a more complex analysis and debate about the directionality of this sequence. Some scholars adhere to the classical view that choice of style and design brand is a self-determined effort to align one’s identities with preferred value-added cultural-media images (McLuhan & Fiore, 2005) while others suggest that branding is surreptitiously ascribed to groups and individuals by market forces. We suggest, however, that the purposive nature of design and branding manipulates individuals and groups into believing that they can and do autonomously choose their identities, but in effect they do not, regardless of the icons they select.
Building on design and branding theory, the conceptual portal of design and branding is potent for unpacking and analyzing the purposive, political, and profit-driven nature of embodied labeling, identity formation and recognition, stereotyping, and responses that span tolerance through exclusion and discrimination. The importance of this conceptual framework lies in the processes and purposes of design and branding as deliberate, complex, and potentially able to manipulate the thoughts and behaviors of individuals and groups about themselves and others who sport particular brands. Moreover, we see branding as both explicit and tacit representation of ubiquitous contemporary design within a specified context. Thus, branding is not restricted to a logo designed for a product, but rather occurs through the design of signifiers that function as iconic simulacra in multiple arenas including but not limited to products, spaces, ideas, services, and even sounds (Licht & O’Rourke, 2007).
While product branding through logo is central to popular culture, particularly in developed economies, the tacit branding and thus commodification of groups and individuals through other mechanisms is more insidious. Logos do not have to be present in order for individuals and groups to be “branded.” As noted by Lefebrve (1991), physical space is not neutral, but rather carries value or devalue-added meanings in its design, purpose, and use. For example, the streets denote home for some, accompanied by devaluation of those who live on the streets by those who do not. The term brandscape (Sherry, 2000) has been coined to denote the role of spaces in designing and assigning both identity and value. Understanding disability through these powerful contemporary lenses provides the opportunity for media activism and the creation of positive social change within global economic environments through iconic design (Pasquinelli, 2005). Disability by Design: Application to Disability Identities and Responses
As noted in the introduction, over the past several decades, disability studies has been grappling with the definition of disability. Theoretical attempts have sought to replace deficit medical understandings of atypical bodies with views of disability as imposed by economic, political, and social factors. We have suggested that the medical-constructed fracture is not useful for a complex understanding of disability and thus have posited disjuncture theory (DePoy & Gilson, 2008) as a synthesizing explanatory foundation. Through this scaffold, disability is viewed as an ill fit between bodies (defined broadly) and environments (defined broadly as well). Disjuncture allows us to examine the interaction of physical, virtual, and abstract environments and diverse corporeal and experiential elements of bodies, and thus brings us to query the universe of environmental design and signifier as significant contemporary forces in delineating the category of disability and affixing the value of those who fit within it. If ignored, the market economy and its practices leave atypical bodies vulnerable to the obfuscated forces of commodification, tacit design, and branding (Adair, 2002).
Through our research, we have found that evidence of “disability by design” is ubiquitous, as is illustrated in the marketing terminology and practices of design and branding in Figures 1 and 2 below. Figure 1-The Disability Debate
June 2005 Synergy Communications has unveiled a new brand identity for a national debate on disability by the Disability Rights Commission UK. http://www.brandrepublic.com/news/480462/Synergy-creates-identity-promote-disability-rights-debate/?DCMP=ILC-SEARCH
Figure 2-Logo to Recognize Employers of Disabled People
The logo for Employment for Disabled People (N.C.P.E.D.P.) indicates synergy between disability and responsible corporations; affirmative action must have at least 3% disabled employees among other criteria in order to display this logo. Logo is intended to identify companies “who care.” http://www.ncpedp.org/ These two examples represent the increasing awareness and use of marketing terminology (e.g. the usage of brand logos and of the word synergy in both figures), design, and branding in particular in the world of disability-related initiatives. Similar to Fussell (1992), whose classic work asserted that owned, displayed, and used objects are definitive of social class, we posit that products, and specific to this paper, “disability” products (or what we refer to as designer disability items), are designed as functional, recognizable, identity-assigning, and manipulative of those who use them and those who view them. In essence, these products by their aesthetic design and distribution outlets brand the user as disabled, as illustrated in the following photos of shower seats. Despite identical functionality, Seat A in Figure 3 is designed as prescribed durable medical equipment while Seat B in Figure 4 is designed for commercial sales and voluntary selection and universal use. The family sporting the medical equipment is often branded as the object of pity, with lexical symbols such as caregiver, assistive technology, and health insurance further reifying and providing devalue-added status to the ‘designer disability” brand. Figure 3-Seat A Figure 4- Seat B
Conversely, a perusal of websites and catalogues of commercial companies reveals that they sell “high brow” (Foster, 2003) designed and marketed household and lifestyle products that were originally branded and in some outlets (rehabilitation, assistive technology, and medical products) yet still are “disability- branded.” In comparing the products, differences in the functional use are not discernable but the design distinctions are often obvious (see Figures 3 and 4) and thus ascribe, sub rosa, a defining brand label to those who have and use “designer disability” products. Moreover, the brand in turn manipulates meaning, behavior, and value and serves to institutionalize and maintain segregated status quo between disabled category members and their non-disabled counterparts. Consider two examples: headphones and attire. Bodies diagnosed with conditions that contain the symptom of distractibility (e.g. Attention Deficit Disorder) are often met with medication and medical products to filter out irrelevant stimulation and aid in concentration. However, those same distractible people, without diagnostic labels, were the subject of a recent article in the NY Times (Sunday, June 8) reporting use of mainstream, high-tech noise canceling headphones to eliminate ambient noise, help people focus, and reduce noise related stress in urban environments (Walker, 2008). Different from the devalue-added signifier of assistive technology, this genre of technology is referred to as fashionable technology by Seymour (2008) and adds value to those who use it.
As part of a current exhibition at the Royal Ontario Museum entitled, Out from Under: Disability, History and Things to Remember, Phillips (2008) draws our attention to attire, not haute couture but another type of fashion. She displays a photo of adults clothed in identical, drab gray sweat suits (called track suits) next to the actual suits themselves. What becomes clear in the visuals and further elucidated in the textual explanation is that this attire not only homogenizes those who wear it, but strips them of individual identity and brands and devalues them as disabled institutional litter regardless of where they live or what they do. The examples above depict devalue-added status. However, disability product design does not always carry a negative connotation. As shown in Figures 5 and 6 below, items such as racing wheelchairs and futuristic prostheses often brand those who use them as superhuman, inspirational and remarkable, but never fashionable. Figure 5-Racing Wheel Chair http://sports.webshots.com/album/52401758gvadWk
Regardless of the value or devalue-added contribution of products that are designed and branded for the disabled body, disability by design serves as a segregating mechanism. As product design and explicit or tacit branding imbue identity, meaning, and value, so do geographies.
The foundation for current architectural standards institutionalized by Le Corbusier harkens back to the elongated measurements and proportionality of Vitruvian Man (Gilson & DePoy, 2007). Bodies that stray too far from the mythic standards of human size, locomotion, sensorium, and behavior do not fit well in geographies that are built according to Vitruvian bodies. It is curious to note that rather than being designed for a larger range of human diversity, contemporary methods and policies guiding new construction and retrofitting of existing built environments provide guidance for partitioned and clearly labeled spaces for disabled bodies. The result is that segments of public spaces and locations are not only designed for disabled bodies, but serve to contain them as well (Sherry, 2000; Butler & Parr, 1999), branding them as atypical and different by the very space that ostensibly was designed for greater access and participation. Figure 7 below demonstrates the cleavage of space into distinct and separate locations for standard and atypical bodies with accompanying simulacra in Figure 8, the cultural icon that denote “spaces” exclusively for “disabled” bodies whether or not those bodies use wheeled mobility. We refer to the wheelchair symbol as a simulacrum because of its diffuse and often empty meaning coupled with its recognition and “devalue-added” component. As ridiculed in Mitchell and Snyder’s (1997) classic movie, Vital Signs, Crip Culture Talks Back, an example of the wheelchair as a meaningless branding simulacrum is the practice of airlines to accommodate embodied difference (in this case deafness) with a wheelchair. Figure 7-Parking
Figure 8- Disability Icon
While the media have been frequently thought about with regard to shaping attitudes toward actors, their power in designing and branding spaces cannot be understated. As noted by Scott (2008), science fiction films are potent in creating design imagination and actualization, as exemplified by films such as AlphaVille and Blade Runner. These two films along with others depict “fables of the future” that provide templates and conceptual blueprints for urban designers. Now turning to more abstract and complex designer-disability phenomena, on first examination, one typically sees disability services as altruistic, professional, and “helping.” We do not dismiss or vilify these important aspects of disability services that are so critical for increasing participation and access to some extent in our current world. However, the picture is not that simple. As early as 1992, Gill published scholarship that revealed the economic advantage derived from disability by providers, professionals, product manufacturers, and so forth. DePoy and Gilson (2004) referred to this phenomenon as the disability industry in which economic survival and profit too frequently trump the goals of facilitating meaningful, full participation in community, work, recreation, and civic life for people who are considered or identify themselves as disabled. Our more recent thinking asserts that in the current global context, economic advantage and value-added services not only can co-exist but must do so in order to be viable.
For analytic and guidance purposes, we turn our attention to the phrase environmental simulacra, originally coined to describe theme parks that are not easily distinguished from the “reality” they represent (Galician, 2004). Rather, these spaces and what occurs within them are designed for the purpose of shaping and encouraging consumerism. Given the current economic and socio-political context of the service environment, we suggest that this term and its principles are relevant to “disability” environments and the disability by design signifiers that are explicit or inherent within them. The service environment or what we refer to as the “disability park” is comprised of all physical and abstract spaces and activity within them as well as explicit and implicit sign, product, and signifier. Besides service delivery as the articulated purpose, implicit branding both influences and reflects the value or devalue-added partitioning of these spaces and the relative groupings that interact within them (e.g. consumer or provider). For the short-run, we are suggesting that without the service and market orientation becoming friends with one another, that services will continue to be devalue-added and thus devalue disability category members. But our longer longitudinal gaze posits a generic environment that responds to the full diversity of humans, and thus designed disability services and products, that brand and segregate humans into arbitrary and punitive categories as they exist today will not be necessary. Aligned with disability products, spaces and services that serve to brand those who use and inhabit disability geographies and parks, disability policy is an abstract exemplar of branding through segmentation. Typically, disability policy has been categorized into two areas: policies that guide the provisions of designed disability services and resources, such as the Social Security Disability Insurance Act (SSDI) (established by the Social Security Amendments of 1956, in the United States), and more recently those, such as the Americans with Disabilities Act (ADA) and the UN Convention on the Rights of Persons with Disabilities that purport to protect and advance the civil rights of populations that are considered or identified as legitimately disabled.
Building on this taxonomy, we suggest that policy is much more complex than its explicit verbiage and articulated outcomes. As noted by Kymlica (2007) in his recent analysis of multiculturalism, global human rights policy is plagued by two overarching problems. The first is the failure of current categorical frameworks to do viable work in dividing humanity into useful categories. The second is the time sequence of designing and implementing targeted and generic policy. We acknowledge the importance of targeted distributive and protective legislation to exist before generic policy can be democratically and efficaciously applied in the current global context (Nussbaum, 2007). However, we caution the long-term perpetuation of such policy that continues to serve the economic process and outcomes of the disability park. Working to locate special policy designed for the populations that identify or are considered as disabled adjacent to generic human rights and distributive policy rather than seeking to globally enforce these existing policies for all (Kymlica, 2007) is a method that perhaps inadvertently separates, differentiates, excludes, and ultimately causes intergroup friction, competition and segregation. Separate policies institutionalize and brand the disability park by partitioning abstract principles and language and applying them differentially to disabled and non-disabled individuals. Above, for example, we noted that people who are considered disabled use “assistive technology” while non-disabled people who use identical products use technology or as Seymour (2008) asserts use “fashionable technology.” The need for help is implied in the word assistive and the institutionalization of this branded concept in the Assistive Technology Act passed in the United States in late 20th century. Another consideration regarding the sequencing of targeted and generic policy was illuminated by Badinter (2006) in her discussion of gender equality. She suggested that the maintenance of “specialized rights and policies” negates their articulated aims of equality. This insidious process occurs by surreptitious design in which recipients of resources and rights only granted by specialized policies are required to remain as victims. Those who are covered under disability by design policy therefore must remain vulnerable, in need of specialized assistance, and in the disability park that provides employment and economic opportunity and advantage to providers and disability designers. Analysis of disability by design policy reveals it as a grand narrative, a brand of designed disability policy that on the surface speaks of resources and equity, but in essence serves up populations identified or identifying as disabled to the disability park. Similarly, The UN Convention on the Rights of Persons with Disabilities, while theoretically enacted to raise awareness and reduce discrimination and disadvantage experienced by populations identified or identifying as disabled, is often persuasive in the abstract but lacks substantive content, enforcement, and thus is policy simulacra as well. Many terms that are at the heart of the policy are often undefined and the mechanisms for enforcement are absent, designing a grand narrative at the global level.
So What is Next?
To summarize, this paper has identified the central roles of design and branding as powerful, political, and potentially evocative of social change. Given the primacy of these market strategies in the contemporary global economy, we have applied design and branding theory to the category of disability and responses to members, with an axiological gaze. This analysis reveals the subversive, segregating, and devaluing use of disability design and branding, often for the planned or unintended purpose of economic advantage for those who are not disability category members.
Examining disability through the synthetic lenses of axiology, design, and branding may paint a contemporary picture that is not complimentary. However, we suggest that this view does not have to be pessimistic. On the contrary, using contemporary practices that are aligned with larger powerful global trends, typically not thought of as disability and human rights scholarship, provides the opportunity for significant change while attending to devaluation of disabled groups. We draw on Holt’s (2004) work to guide our conclusions. He suggests that the current reactive, outsourced method of branding maintains the status quo rather than facilitating cultural opportunity and advancement. Holt calls on cultural activists to take the reins of design and branding for the purpose of global social development. According to Holt and relevant to disability by design is the realization that iconic branding has activism inherent in it if it is conducted by those to whom he refers as cultural activists and to others who have been named media activists (Riley, 2005).
Building on this important work, we identify the first step in harnessing the power of the global market and its related practices as recognizing them in the disability park. We have attempted to begin that recognition in this paper.
The second step requires careful and complex analysis of design and branding as value or devalue-added. Design and branding may be destructive, facilitative, or both of human rights and equality. Carefully interrogating disability products, places, images and abstracts through an axiological lens foregrounds the economic and social functions inherent in design praxis and branding. This detailed attention creates an opportunity for using design and branding to replace devalue-added status with value-added symbols.
Thus, disability scholars and activists are in a position to capture and use design and market strategies to make positive change in several areas. We refer back to Kymlica (2007) here to identify two that contribute to the unwanted and pejorative maintenance of designed disability: useless categorical taxonomies, and sequencing and timing of targeted and generic policies and practices.
The category of disability itself is simulacra as its meaning is vague, differentially defined, and contains assumptions of homogeneity among members in a group that has no clear substantive boundaries or content (Depoy & Gilson, 2004; Titchovsky, 2007). Moreover, axiological analyses reveal that nature of value implicit in the lexical symbol, disability. Furthermore, this symbol obfuscates its own potential for economic exploitation by those who are not assigned to it. Redesigning categories and their brands is a conceptual and practical movement that is critical for advancing equality, participation, and human capabilities (Nussbaum, 2006).
Our final point is that the timing of designed disability policies and practices is essential to consider. What we mean here is that targeted praxis may be warranted temporarily, but in the long term it perpetuates and obscures the disability park. New categorical concepts and timing by cultural and media activists using market-based strategies along with other human rights methods of change have the potential to harness design and branding for significant and lasting global improvement.
Elizabeth DePoy, Ph.D., is Professor of Interdisciplinary Disability Studies at the Center for Community Inclusion and Disability Studies, and Social Work at the University of Maine, where she teaches research and evaluation methods and disability studies from a legitimacy perspective. Her research focuses on access, identity as design, and human rights.
Stephen Gilson, Ph.D., is Coordinator and Professor of Interdisciplinary Disability Studies at the Center for Community Inclusion and Disability Studies, and Social Work at the University of Maine, where he teaches disability as diversity, health and disability/health policy, and human behavior from a legitimacy perspective.
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