- freely available
Societies 2012, 2(4), 302-316; doi:10.3390/soc2040302
Published: 19 November 2012
Abstract: In this paper, we query the legitimacy of the atypical body for membership, quasi-membership, or exclusion from the category of human. Geneticized, branded, and designed as not normal, undesirable, and in need of change, embodied disablement can provide an important but circumvented analysis of the explicit and implicit nature of the legitimate human body, its symbolism, and responses that such bodies elicit from diverse local through global social and cultural entities. Building on and synthesizing historical and current work in the sociology of the body, in disability studies, in cyborg and post-human studies, this paper begins to ask questions about the criteria for human embodiment that are violated by interpretations of disability and then met with a range of responses from body revision to denial of the viability of life. Given the nascent emergence of this important topic, this paper chronicles the theory, questions and experiences that have provoked questions and posited the need for more substantive theory development and verification.
Emerging from an opposition to medical deviance theories of the 20th century, sociology and related disciplines have brought potent intellectual frameworks to an expanded, non-medicalized analysis of disabled bodies. Yet, scholars have only begun to directly engage in interpreting embodied disablement and responses to it as microcosm, meaning, and metaphor for fundamental social, philosophical, and cultural questions about essential elements and boundaries of embodied humanness. Goffman’s classic work  briefly addressed the relationship between stigma and humanness or lack thereof, and several scholars such as Gately and Hammer  examined symbols of difference as deviance in their analyses. Chandler  looked at containing those outside of the boundaries of humanness through institutionalization or other geographic isolation. However a substantive and well-organized literature, which we suggest is a critical but an unmined element of embodiment scholarship to inform action has not yet been initiated.
In this paper, we enter the portal through which to query the legitimacy of the atypical body for membership, quasi-membership, or exclusion from the category of human. Geneticized, branded and designed as not normal, undesirable, and in need of change [4,5], embodied disablement can provide an important but circumvented analysis of the explicit and implicit nature of the legitimate human body, its symbolism, and responses that such bodies elicit from diverse local through global social and cultural entities. Beyond simply theorizing, this dialogue begins to unearth potent and in-depth examination of membership, meaning, and social valuation on the basis of embodied features that exclude bodies from membership of the category of human. Such dialog is essential for clarity and transparency necessary to negotiate and inform eligibility for equality of rights and participation in diverse societies and groups. Building on and synthesizing historical and current work in the sociology of the body, in disability studies, in cyborg and post-human studies within a post-postmodern framework, this paper queries the criteria for human embodiment that are violated by interpretations of interior disability and then met with a range of responses from body revision to denial of the viability of life.
“Postmodernism conceived of contemporary culture as a spectacle before which the individual sat powerless, and within which questions of the real were problematized” . Given the post-post-modern aim to move beyond this irony and interpretive elusiveness to thoughtful substance, this paper reflects a post-postmodern trend. While there is not a unitary and agreed upon definition of post-postmodernism, one of its desired outcomes is to counter the postmodern vacuum left by irony and skepticism and thus return substance to thought and action. Also recognizing the global market and technologically advancing context, post-postmodern knowledge relies on dialogue among multiple theoretical, spiritual, aesthetic, and disciplinary arenas as they are brought to bear on both the formulations of and answers to complex questions . Most important for us, is that in opposition to its predecessor, post-postmodernism once again seeks substantive knowledge to inform action, albeit in newly configured “interdisciplines” which competed in the modern scholarly ring and then met with demise in the postmodern carnival.
Within this synthetic approach, a curious matrix of theory and experience emerged and brought us to query the relationship of humanness and disability. Over the years of engaging in the study of disability from multiple disciplinary stances, we, along with many scholars in the field of disability studies, moved from the perspective of disability as contained within the corpus to disability as a broad and complex interaction between corpus and context. Disability is thus seen as an ill-fit, which we refer to as disjuncture  between atypical embodied experience and the multiple contexts in which a body acts. More recently, by adopting a post-postmodern approach to querying and seeking knowledge from diverse scholarship, including theology, philosophy, art, and architecture a note in our own thinking was tweaked. In order to guide informed action to accomplish the goal of healing disjuncture, our gaze needed to be expanded to look at the meaning of the atypical body within the context of defining human desirability and thus humanness.
In this section, we present the theoretical framework and evolution of thinking that forms the bedrock for further organizing an exploration of the interstices of disability and humanness. Humanness in this paper is defined as the attributes that endow an individual with legitimate membership in the category of human and thus entrust that individual with equivalent rights and opportunities, at least ostensibly, that are afforded to other category members.
2.1. Theoretical Framework
Legitimacy theory [5,7] forms the theoretical foundation for this paper. In essence, legitimacy theory leads to questions of what criteria imbue an individual, group, set of ideas, and so forth with authenticity, acceptance, and worth. Embedded within and building on the genre of historical legitimacy theories  we chose this theoretical perimeter for its potency in guiding thinking about complex groups, humanness being one of the most contested and multifaceted.
Legitimacy theories can be traced as far back as the writings of Thucydides in 423 BCE, in which questions were posed and answered regarding power, its acquisition, who can morally exercise it, and in what way . Despite legitimacy theory being birthed by political theory, questions of legitimation have been expanded to numerous domains, including but not limited to social norms and rules, distributive justice, and in this paper, to who is a bona fide and full member of humanity. And while there are differences in the application of legitimacy theories to diverse substantive questions, what all have in common is their search for credibility and normative acceptance.
The analytic gift brought to this discussion by legitimacy theory is its potential to denude the normative and often unquestioned beliefs and rhetoric about who belongs to a particular group, and then to expose the values that imbue responses to the full continuum of members, quasi-members, and non-members. Thus, given the relative absence of humanness from debates about the nature of disability, legitimacy theory can provide a logical residence to enter and question who is accepted into the home of humanness and who is not.
2.2. Next Thoughts
Framed by legitimacy, questions from several substantive bodies of knowledge coalesced to germinate our curiosity about how embodied disability and humanness intersect, overlap, or diverge. To organize the discussion, Table 1 identifies each arena and the questioning that emerged from it.
In the post-postmodern spirit, we synthesize, amalgamate, and briefly discuss parts of these literatures and the queries that for us arise from them, rather than discussing them as discrete intellectual entities.
|Table 1. Arena and Our Questioning.|
|Substantive Body of Knowledge||Questioning|
|Human rights policy||What is the meaning of human? Quasi human? Not human? Who is fully, partially or not eligible for rights?|
|Robotics and Human Augmentation||How does technology redefine humanness?|
|Branding and marketing of “desirable”||How do branding and marketing shape and reify common definitions of desirable through undesirable humanness?|
|Art, Architecture, and Curated Display||How do art, architecture and curated display shape and reflect common definitions of desirable through undesirable humanness?|
|Embodied conditions—our own and those in our lives (example of Louise is discussed below)||How do case exemplars inform the discussion of humanness?|
2.3. A Quick Glance in the Rear View Mirror
The atypical body presents in numerous forms from the deviant visual through behaviors and thoughts. It is therefore not surprising that multiple paths have been traversed to analyze the scope and nature of the atypical body, the attribution of “disability”, and then the meaning of the body in shaping worth and receiving associated responses, from staring , to celebration to death . From ancient Greece until current time, a continuum from fascination to revulsion, and ultimately expulsion was enacted in some fashion, whether through symbolism or action. While a full history is way beyond the scope of this paper, the points below provide a conceptual context for the role of the atypical body in establishing markers and parameters for the acceptable to the heinous.
Within the defective, while specific embodied conditions are treated somewhat differently, most are residents of the “undesirable neighborhood.” Some are imprisoned there more than others.
Responses to people with devalued embodied differences are diverse, engendering a continuum from simple curiosity and disapproving stare  through marginalization and being jettisoned from humanness.
Prior to the Enlightenment, deliberation about humanness took place primarily in philosophy and theology.
Enlightenment thinking captured the body within a “scientific” bastille, with scientists and professionals taking the lead as humanness sentries.
Industrialization standardized the desirable body function, size, and appearance.
Western thinking of the late 20th and early 21st centuries claimed ownership of constructionist viewpoints of discrimination against embodied difference despite their existence throughout history.
Post-post modernism promises to creatively fill the conceptual void left by postmodern thinkers—marrying previously unfriendly disciplines.
Significant documentation exists in recorded history through current times, whether contained in visual image, illuminated manuscript, philosophical narrative, policy narrative etc., of concern with the embodied atypical . What is considered atypical and where these attributes nudge or rupture the boundaries of humanness differ  according to context. But regardless of which condition occupies the atypical seat, social acceptance and how these individuals have been approached are out of the ordinary. As example, a look back at the history of those who could not hear  reveals marginalization until ostensibly, the construct of valued linguistic diversity replaced hearing deficit as a descriptor of the condition of deafness. However, has it really? While the assertion is made that lack of hearing and cognitive function are no longer linked, what about the huge medical and professional industries that seek to remediate barriers to positive learning outcomes joined through “science” to hearing impairment ? Synonyms for the term “impairment” include damage, destruction, deterioration, ruination, ruined goods, and wreckage  stripping away any obfuscation of negative valuation of the condition of “not hearing” on the part of those who see the biology of hearing as a normative and essential element of full humanness .
2.4. Back to Today
Moving from history to contemporary times, we see the ambiguous role of technology, with “human as machine” as one of the major concerns in defining humanness and its non-example . First, the definition of technology in itself is broad and changing. The list that follows below presents five definitions which illustrate technology as knowledge, process, product, and attribute of social groups.
the branch of knowledge that deals with the creation and use of technical means and their interrelation with life, society, and the environment, drawing upon such subjects as industrial arts, engineering, applied science, and pure science .
the terminology of an art, science, etc.; technical nomenclature. .
a technological process, invention, method, or the like .
the sum of the ways in which social groups provide themselves with the material objects of their civilization .
the making, modification, usage, and knowledge of tools, machines, techniques, crafts, systems, methods of organization, in order to solve a problem, improve a preexisting solution to a problem, achieve a goal or perform a specific function .
Diverse perspectives [17,18,19,20] span from technology as emancipation and improvement of the organic corpus to the creation of cyborg as the next evolutionary step, decimating the human form . Framed by legitimacy theory, DePoy and Gilson  proposed that technology itself is not the direct object on which judgment is formulated, but rather, how technology is designed, acquired, and displayed by the user brands the desirability and humanity of the user and the role of technology as augmenting or detracting from humanness.
In essence, disability, and we would question humanness as well, are not exempt from marketing and branding. According to DePoy and Gilson  ascribing labels such as the term “assistive” to technology products functions as a mechanism for extract(ing) users from typical product markets and land(ing) them in disabling social geographies.” (, p. 89) Moreover, the aesthetic design of products such as medicalized appearing mobility supports is a major branding practice, casting those who need or want such devices as atypical, dependent, and deficient . The question raised by deficit branding leads us to the larger philosophical field of how deficient one must be in order to be considered apart from desirable humanness. Consider the design, implicit appearance, name branding, and difference in meaning between the hiking stick for all which helps humans recreate (Figure 1) and a cane for the mobility impaired patient displayed in Figure 2.
More broadly, despite rhetoric to the contrary, abstracts such as specialized rights legislation , services, education, specialized programs, and even branded parking spaces serve as identifiers and segregators, removing deficient bodies and then containing, serving them up for observation, and assigning embodied meaning. As example, consider the ascription of person first language only to people sporting designated conditions. This specialized rhetoric was theoretically designed as assertive and celebratory of humanness of individuals previously referred to as diagnostic entities. However, we would suggest that this trompe l’oiel is not successful at cloaking the snag in the humanness fabric, resulting from the labeled atypical, as only conditions which are excessively devalued are located after the assertion of “personhood”. Contrasting the use of person first language with typical parlance (e.g., person with a disability, but not person with beauty or even person with meanness) can splay open the internally contradictory use of what to us seems like dehumanizing vernacular.
By example as well as non-example, art, architecture, and curated display can both reflect and inscribe the continuum of humanness in bricks and mortar, artist rendering, and installations. Clearly, in the literature and over time, the power of the built environment in communicating meaning has not gone unnoticed. Jencks and Kropf  peer way back in the history of humans and divinity referencing the Ten Commandments as the first set of architectural rules which served to admit or reject certain bodies. So over the course of time, spatial, sensory, and virtual architectures have crafted the ‘‘human body,’’ sculpting the collective and individual meaning of bodies through the explicit and tacit processes of acceptance or exclusion .
Architecture is joined by curated display to create a formal institutional history of the acceptable body. As example, a recent exhibit in the U.S. Smithsonian Museum of Natural History entitled “What Does It Mean to Be Human” invokes an evolutionary history linking humanity to the emergence of the contemporary body. As example, a response about the meaning of “human” showcased on the website is, human is equivalent to “walking, talking, thinking and social being”  Further depicting the hegemony of the scientifically correct corpus is “Bodies, The Exhibition” . This traveling global exhibit, by allowing the viewer to inspect the interior corpus, constructs the normal and the abnormal and may be powerful in depicting not human through non-example.
Finally, we get to embodied conditions as heuristic  in informing this agenda. Louise, a relative of ours who recently died, acts as exemplar. We depict her later life as reflective of an archetypal intersection of embodied disability and humanness. As her condition, diagnosed as Huntington’s disease, became more noticeable, family members moved from descriptive terms of pity to denial of her humanness. Loving relatives whispered, “She would be better off dead”, “she is no longer herself”, and so forth. When she died last month, common euphemisms such as “now she is at peace” or “her suffering is over” were spoken, despite anyone having conversed with her about the peace or suffering that she may or may not have experienced during her life without and then with Huntington’s disease. More profoundly illustrative of dismantling her humanness, any celebration of Louise’s life felt absent at her own funeral, as the few in attendance prattled on about their daily lives, not noticing that the purpose of the family gathering was to acknowledge the death of a once beloved family member.
As is evident in the cross-disciplinary foundation, conceptual framework, and multiple exemplars above, the relationship between disabled embodiment and legitimacy of humanness provides a scholarly multiplex yet to be developed and applied to equality and respect. We would suggest that analysis of the disabled body as microcosm continues to be concealed in underexplored intellectual territory. As such, terms such as human rights, citizenship, human responsibility, triage, and so forth remain vague as well. The role of the atypical embodied can be potent in clarifying conceptualizations, conflicts, and negotiations of the boundaries of humanness such that it should not be overlooked in socially responsible thought and action. Because of the nascence of explicit theory of the interstices of the embodied atypical and humanness, this paper provides no answers or action agendas. Rather, our intent was to illustrate the convoluted but intellectually rich pathways necessary to develop this field of investigation as the basis for reflection and informed action.
References and Notes
- Goffman, E. Stigma: Notes on the Management of Spoiled Identity; Prentice Hall: Englwood Cliffs, NJ, USA, 1963.
- Gately, S.; Hammer, C. A textual deconstruction of rudolph the red—nosed reindeer: Utilitarian, mechanistic, and static constructions of disability in society and in schools. Essays Philos. 2008, 9. Available online: http://commons.pacificu.edu/eip/vol9/iss1/9/ (accessed on 21 June 2011). Article 9.
- Chandler, D. Semiotics: The Basics; Routledge: New York, NY, USA, 2004.
- Gedge, E. Genetics, disability and symbolic harm. In Illness, Bodies and Contexts; Lange, I.N., Norridge, Z., Eds.; Inter-disiplinary Press: Oxfordshire, UK, 2010.
- DePoy, E.; Gilson, S.F. Studying Disability; Sage: Thousand Oaks, CA, USA, 2011.
- Post-Postmodernism. Available online: http://www.scribd.com/doc/5710598/Post-Post-Modernism (accessed on 4 August 2012).
- DePoy, E.; Gilson, S.F. Rethinking Disability: Principles for Professional and Social Change; Brooks-Cole: Pacific Grove, CA, USA, 2004.
- Zelditch, M. Theories of legitimacy. In Psychology of Legitimacy; Jost, J.M., Ed.; Cambridge University Prss: New York, NY, USA, 2001; pp. 33–35.
- Garland-Thomson, R. Staring: How We Look; Oxford University Press: New York, NY, USA, 2009.
- DePoy, E.; Gilson, S.F. Human Behavior Theory and Applications: A critical Thinking Approach; Sage: Thousand Oaks, CA, USA, 2012.
- Hayry, M. Rationality and the Genetic Challenge; Cambridge University Press: Cambridge, UK, 2010.
- Nomeland, M.; Nomeland, R. The Deaf Community in American: History in the Making; McFarland & Company: Jefferson, NC, USA, 2012.
- Marschark, M.; Hauser, P. Deaf Cognition: Foundations and Outcomes; Oxford: New York, NY, USA, 2008.
- Dictionary.Com. Technology. Available online: http://dictionary.reference.com/browse/technology?s=t (accessed on 3 August 2012).
- Seikel, J.A.; King, D.; Drumright, D.G. Anatomy & Physiology for Speech, Language, and Hearing; Delmar Cengage Clifton Park: NH, USA, 2009.
- Muri, A. The Enlightenment Cyborg: A History of Communications and Control in the Human Machine, 1660–1830; University of Toronto Press: Toronto, Canada, 2007.
- Wikipedia. Technology. Available online: http://en.wikipedia.org/wiki/Technology (accessed on 3 August 2012).
- Wolfe, C. What is Posthumanism?; University of Minnesota: Minneapolis, MN, 2010.
- DePoy, E.; Gilson, S.F. Branding and Designing Disability; Routledge: Abingdon, Oxon, UK. in press..
- Haraway, D. Situated Knowledges in Simians, Cyborgs, and Women; Routledge: New York, NY, USA, 1991.
- Kelly, K. 4 arguments against technology. Available online: http://blogs.hbr.org/now-new-next/2009/04/4-arguments-against-technology.html (accessed on 11 August 2012).
- Bagenstos, S. Law: The Contradictions of the Disability Rights Movement; Yale University Press: New Haven, CN, USA, 2009.
- Jencks, C.; Kropf, K. Theories and Manifestoes of Contemporary Architecture, 2nd ed.; John Wiley & Sons: Hoboken, NJ, USA, 2006.
- What does it mean to be human? Available online: http://humanorigins.si.edu/about/involvement/being-human (accessed on 2 August 2012).
- Premier Exhibitions.Bodies: The exhibition celebrate the wonder of the human form. Available online: http://www.bodiestheexhibition.com/ (accessed on 10 July 2012).
- Douglas, N. Freedom: Healing for Parents of Disabled Children; Olive Leaf Ministries: Kansas City, MO, US, 2008.
- Olshansky, S. Chronic sorrow: A response to having a mentally defective child. J. Soc. Casework 1962, 43, 190–193.
- Ustün, T.B.; Kostanjsek, N.; Chatterji, S.; Rehm, J. World health organization disability assessment schedule ii (whodas ii). Available online: http://www.who.int/icidh/whodas/index.html (accessed on 20 July 2012).
- Saraph, V.; Zwick, E.B.; Auner, C.; Schneider, F.; Steinwender, G.; Linhart, W. Gait improvement surgery in diplegic children: How long do the improvements last? J. Pediatr. Orthop. 2005, 25, 263–267, doi:10.1097/01.bpo.0000151053.16615.86.
- University of Washington. AccessIT. Available online: http://www.washington.edu/accessit/ (accessed on July 31, 2012).
- Glow dome. Available online: http://www.enablemart.com/Catalog/Arts-Crafts/Glow-Dome (accessed on 15 July 2012).
- Kurtzweil, R. The Singularity is Near; Penguin: New York, NY, USA, 2006.
- Amber Case: We are all cyborgs now. Available online: http://www.ted.com/talks/amber_case_we_are_all_cyborgs_now.html (accessed on 1 August 2012).
- Weyand, P.G.; Bundle, M.W.; McGowan, C.P.; Grabowski, A.; Brown, M.B.; Kram, R.; Herr, H. The fastest runner on artificial legs: Different limbs, similar function? J. Appl. Physiol. 2009, 107, 903–911, doi:10.1152/japplphysiol.00174.2009.
- Rispler-Chiam, V. Disability in Islamic Law; Springer: Dordrecht, The Netherland, 2007.
- Nakamura, K. Deaf in Japan: Signing and the Politics of Identity; Cornell University Press: Ithaca, NY, USA, 2006; p. 226.
- Metzler, I. Disability in Medieval Europe: Thinking about Physical Impairment in the High Middle Ages, c.1100–c.1400; Routledge: New York, NY, USA, 2006.
- Lange, I.; Norridge, Z. Illness, Bodies and Contexts; Inter-disciplinary Press: Oxford, UK, 2010.
- Flanders, N. Sex selection abortions shock us, but abortion of the disabled still justified. Available online: http://liveaction.org/blog/sex-selection-abortions-shock-us-but-abortion-of-the-disabled-still-justified/ (Accecssed on 2 August 2012).
- Coleman, D. Assisted suicide laws create discriminatory double standard for who gets suicide prevention and who gets suicide assistance: Not dead yet responds to autonomy, inc. Disabil. Health J. 2010, 20, 39–50, doi:10.1016/j.dhjo.2009.09.004.
- Disability Rights and Education Fund Why assisted suicide must not be legalized. Available online: http://www.dredf.org/assisted_suicide/97-DREDF-website-version.html (accessed on 1 August, 2012).
- Rimon-Zarfaty, N.; Rax, A. Abortion committees as agents of eugenics: Medical and public views on selective abortion following mild or likely fetal pathology. In Community: Reproductive Technologies among Jewish Israelis; Kin, G., Ed.; Berghahn Books: New York, NY, USA, 2012; pp. 202–225.
- Wolbring, G. Wrongful birth/life suits. Available online: http://www.bioethicsanddisability.org/wrongfulbirth.html (accessed on 1 August 2012).
© 2012 by the authors; licensee MDPI, Basel, Switzerland. This article is an open-access article distributed under the terms and conditions of the Creative Commons Attribution license (http://creativecommons.org/licenses/by/3.0/).