Disability Ethos as Invention in the United States’ Twentieth and Early Twenty-First Centuries

Abstract

This article posits that disability activists routinely present a disability “ethos of invention” as central to the reformation of an ableist society. Dominant societal approaches to disability injustice, such as rehabilitation, accessibility, and inclusion, may touch upon the concept of invention; but, with ethotic discourse, we emphasize disability as generative and adept at producing new ways of knowing and being in the world. We identify an “ethos of invention” as driving early resistance to socially constructed “normalcy”, leading the push for cross-disability alliances to incorporate intersectional experiences and propelling the discursive move from inclusion to social justice. Through our partial re-telling of disability rights history, we articulate invention as central to it and supporting its aims to affirm disability culture, reform society through disabled perspectives and values, and promote people with disabilities’ full participation in society.

1. Introduction

The pervasive disability rights mantra, “nothing about us, without us” accentuates the right of people with disabilities to be included in decisions about disability and the societies in which people with disabilities live (Charlton 1998). Yet, practices and policies of the twentieth century in the United States—specifically those under the interconnected approaches of rehabilitation, accessibility, and inclusion—are lamented in critical disability circles for not fully embracing disability experiences as a means of destabilizing societal actions, norms, and values. Articulated among disability activists and allies is the promise of disability to generate new ways of knowing and being in the world as well as disrupting the ableist attitudes undergirding society. Disability’s generative and disruptive potentials reveal an “ethos of invention” that pushes the margins of existing practices and understandings of disability. We employ the phrase “ethos of invention” in a dialectical sense, referencing junctures where people with disabilities have invented an ethos that resists ableist rhetorics and environments but also where people with disabilities have created spaces that allow disability to invent a worldview that breaks down prejudices and reimagines society. In short, an ethos of invention remains tied to the invention of ethos, and vice versa. In this essay, we argue that a dialectical ethos of invention drives the movements—and the rhetorical construction of these movements—leading to a seminal disability legislation and social awareness of disability’s contributions to society.

An ethos of invention validates disability’s right to claim rights and also sets an ethotic foundation essential to community reflection, expansion, and evolution. The epideictic value and function of an ethos of invention means that it fits well into the “forward looking” ethotic discourse emphasized by James S. Baumlin and Craig A. Meyer in their modern discussion of ethos (Baumlin and Meyer 2018, p. 2). An ethos of invention validates the experiences of people with disabilities and empowers them in the process of self-definition and self-determination. It responds to an oppressive history of ascribing meaning to the physiological conditions of “disability” and society’s corresponding tendencies to diagnose and control the lives of people who fall into socially constructed categories. An ethos of invention creates spaces wherein people with disabilities can express individuality, promote understanding, and transform culture.

Although this essay situates a disability ethos of invention as informing past conversations about rehabilitation, accessibility, and inclusion, we recognize that these conversations are ongoing and that invention remains an important element in the contemporary disability rights movement. The promise of a disability ethos of invention underscores critiques of socially constructed normalcy; it informs the push for cross-disability alliances to incorporate intersectional experiences, and it motivates the reconsideration of inclusion policies through a lens of social justice. Importantly, invention shapes scholarship seeking to (re)write the future of disability “in which disability is understood… as political, as valuable, as integral” (Kafer 2014, p. 3). It supports the resistance and contestation of normative systems that displace disability (McRuer 2006, p. 3). Invention also informs the “cultural turn” of disability studies that explores the material experience of disability through a new sociocultural context, one that embraces ambiguous experiences and contradictory identities within the dialectical dis/ability complex (Dolmage 2014, p. 100; see also Goodley et al. 2019). In other words, a disability ethos of invention identifies disability as generative, and this quality suggests the potential of disability to rewrite and re-envision our societies.

In what follows, we explain how an ethos of invention emerges in critiques of dominant sociopolitical practices meant to reduce societal barriers and liberate people with disabilities from an ableist society’s grasp. We focus on rehabilitation, accessibility, and inclusion, with the understanding that the terms can be used interchangeably; they are not mutually exclusive, nor are they only practices of the twentieth century. For this essay, we understand the terms as follows:

Rehabilitation in medical contexts marks efforts to modify, train, and develop individuals with disabilities as to better assimilate them into existing culture. Disability scholars understand rehabilitation through a critical lens, best put by Alfred Ndi as the presumption of “an objective condition” and efforts “to make changes on the body of the disabled person in order to bring it as closely as possible to the condition of normality”.

(Ndi 2012, n.p., emphasis in original)

Accessibility is commonly understood as a legal response to disability discrimination and the right to equal access. More generally, the concept refers to “barrier-free environments” and supports actions that eliminate social, institutional, and structural barriers so that people with disabilities gain entrance to all aspects of society.

(Mace 1985, p. 147)

Inclusion, as Emily Russell points out, is “an umbrella term, capturing legal battles over public access, mainstreaming in schools, and increased awareness of disability in cultural expression, political agenda, and academic study” (Russell 2011, p. 198). Often, inclusion is evoked to deepen a discussion of barriers and emphasize the goal of equal participation.

All three terms are used frequently in conversations about and by people with disabilities, and, therefore, the terms are contextually negotiated and understood. The definitions we offer here start to demarcate a disability perspective. We hope to demonstrate how an ethos of invention expands the definitions to account for fluctuating disability experiences and a commitment to re-evaluating sociopolitical practices in light of evolving disability knowledge and experience.

2. Rehabilitation: The Spectrum of Invention (for/by) Bodies

Rehabilitation remains one of the most enduring approaches to disability of the twentieth century, serving as a celebration of modern medicine and a common practice for reducing barriers for people with disabilities and assimilating them into society. However, the medical and educational inventions that characterize rehabilitation stand in contrast to the ethos of invention described in this essay. The ethos of invention emerges as one response to rehabilitation practices that focus on changing individual bodies rather than changing the societal norms that constrain these bodies. The tensions between hegemonic structures/practices of an ableist society and the counter-hegemonic disability perspectives/experiences were quite apparent during the build-up and aftermath of World War I, when social reformers promoted rehabilitation as a means of reducing the stigma of disability, providing for injured veterans, and integrating people with disabilities into the workplace where they could demonstrate the cultural values of economic self-sufficiency. Resistance to these rehabilitative goals came from people who felt constrained by notions of bodily normalcy and who argued that it was the workplace, not people with disabilities, that needed to change.

In the United States, labor constitutes a primary way of serving society, demonstrating cultural values of autonomy, productivity, and self-reliance (Russell 2011, pp. 4–5). This sentiment was evident in the early twentieth century emphasis on “keeping America American”, a political phrase that referred to the economic progress and sufficiency of the citizenry (and, by extension, the State) and informed policies designed to identify, reform, contain, and/or keep out people “likely to become a public charge” (Nielsen 2012, p. 108).1 People with disabilities were firmly relegated to this subordinate status, and the problem of “crippledom” was largely framed as “economic dependency” (Byrom 2001, p. 133).

Rehabilitationists believed that a combination of medical intervention and educational training best positioned people with disabilities to defy the stereotypes and stigmas that constrained their opportunities for employment. Culturally deemed unable to work and dependent on charity, rehabilitation gave people with disabilities an avenue to prove their willingness to work and reclaim the status of “useful citizens” (Rose 2017, p. 192). Rehabilitation represented an intentional attempt to build the utility of people with disabilities, since they were deemed passive victims of fate. In the framework of rehabilitation, individuals were viewed as active in their reaction to an unfortunate situation. Indeed, the articulation of a “rehabilitated wo/man” gave said person ethotic standing as a pragmatic, hard-working, and aspirational American—in other words, as an achiever to be socially and culturally admired. The goal of rehabilitation was assimilation, if not in body, then at least in national ideals.

Rehabilitation measures began in the early twentieth century to address the problem of economic dependency of people with disabilities, and then burgeoned when large numbers of injured World War I veterans returned stateside and needed employment to support themselves and their families. Historical accounts suggest that U.S. society viewed disability, due to sacrificing one’s body to serve one’s country, as culturally credible; in fact, “Wartime made disability heroic” at a time when society often articulated disability as a threat to progress (Nielsen 2012, p. 87). Evidence of this positive attitude towards veterans was reflected in the number of federal pensions, vocational training programs, and services available for the disabled veteran, and the early implementation of these services compared to the civilian population of people with disabilities.2 Though veterans still faced discrimination, they were generally seen as “good” citizens who deserved economic and social support. Rehabilitation focused on integrating certain types of people with disabilities deemed heroic or innocent, and left out other people with disabilities with bodies labelled “defective” and “undesirable” by eugenical thinking, a pseudoscientific movement also gaining momentum during this time (Davis 2010, p. 3).

Henri-Jacques Stiker argued that the rise of prosthetics among WWI injured veterans moved disability discourse away from disability as a health crisis and individual “lack” and toward that of “fill[ing]” and “overcom[ing]” that lack through replacement, repair, and rebuilding (Stiker 1999, p. 124). Brad Byrom added that the public’s increased trust in orthopedic surgery and the rhetoric of their professional journals (which blamed individuals for their dependency) remained central to this shift, constituting the core of what the disability rights movement later identified as the medical model of disability (Byrom 2001, p. 134).3 The social and political priority given to the medical rehabilitation of World War I veterans, combined with the increased publication, practice, and credibility of orthopedic surgery, caused the medical model to engulf the tenuously defined “social model”, or those who identified as social rehabilitationists and “emphasized the need for social and cultural change” as the primary mode of solving the problem of disability economic dependency (Byrom 2001, p. 134).

As such, rehabilitation dominated disability discourse through most of the twentieth century and gained prominence, especially during times of war. Rehabilitation represented an invention in relation to disability that stood in contrast to theories of non-invention, such as exclusion or extermination in the name of a eugenical ideal. Meanwhile, those who drew inventive possibilities from within disability experience and objected to the use of medical rehabilitation to resolve disability’s external “cultural dislocation” began to organize and to lay the groundwork for sociopolitical change (Snyder 2006, p. 39). Some people with disabilities rejected the defective status assigned to their bodies and the idea that their bodies needed to change to be economically productive, aiming instead to focus attention on the environments that remained unresponsive to the economic value of people with disabilities. To put it differently, people with disabilities countered the invention of rehabilitative measures with another notion of invention that centered on the credibility of people with disabilities, rather than a socially constructed ideal.4 For example, a group of New Yorkers, who later called themselves The League for the Physically Handicapped, protested the city’s Emergency Relief Bureau with slogans like “We Don’t Want Tin Cups. We Want Jobs” and “We Are Lame, But We Can Work” (Nielsen 2012, p. 135). After its formation in 1935, the League fought against “unjust discrimination” and a “calloused and inhuman attitude” toward people with disabilities seeking employment, demanding that the workplace adjust to fit the needs of people with disabilities (Death Watch 1935). Resistance by this so-called “radical” group demonstrated that people with disabilities were beginning to see themselves as an oppressed minority with an underrepresented voice, and a consciousness emerged among some people with disabilities that society must transform its thinking (Longmore and Goldberger 2000, p. 901).

The ethos of invention we identify, as contributing to early twentieth century disability discourse, resisted the “tyranny of the norm” that characterized the disability experience, especially in the workforce (Davis 2010, p. 6). Rehabilitation practices throughout the century reinforced the idea that only “able” bodies enjoyed full citizenship and that “deformed, deafened, amputated, obese, female, perverse, crippled, maimed and blinded bodies do not make up the body politic” and did not contribute to a prosperous society (Enforcing, Davis 1995, pp. 71–72; see also Russell 2011). Rehabilitation also positioned disability as a failed or mistaken iteration of human form that society was responsible for remedying by re-inventing the disabled body. While the League for the Physically Handicapped “never probed disability’s function in modern society” or “reshape[d] the terms of public discourse”, it did politicize disability’s relationship to the workplace and social policies that glorified normalcy (Longmore and Goldberger 2000, p. 920). Their resistance to the oppression of “normal” and the idea that normality preceded a citizen’s right to work advanced a shift in thinking about the sociocultural barriers that excluded (and precluded) people with disabilities. As rehabilitationists speculated ways to re-invent disabled bodies, some people with disabilities defied this approach and demanded that disability be seen as a means of re-inventing societal norms.

3. Accessibility: The Limits of a Cross-Disability Identity

Accessibility measures of the late twentieth century regularly and effectively organized around a cross-disability identity, which we define as individuals representing a range of disabilities but who all share experiences of exclusion and stigma. As people with disabilities applauded the tactical effectiveness of cross-disability coalitions in guaranteeing entryways into society’s structures and, specifically, bringing to fruition the Americans with Disabilities Act of 1990, an awareness developed that accessibility laws were based on a homogeneous understanding of disability, social barriers, and types of discrimination. Therefore, in addition to cross-disability solidarity, disability advocates increasingly called for more intersectional and diverse representations of the disability experience (see in particular, Bell 2006; Miles et al. 2017; Shakespeare 2010; Sherry 2016; Vernon 1999). As people with disabilities advocated for accessibility, they drew upon an ethos of invention to both advance the credibility of their claims and also advance the complexity of the accessibility conversation.

Working together, disabled activists amplified the power of their voice and persuasiveness of their demand for societal change. Their cross-disability collaborations established a disability ethos in discourse about societal and economic barriers. Protests and work strikes occurred on job sites and in cities, as the disabled put pressure on the government to insure disabled rights. One notable instance of mid-to-late twentieth century collaboration included the short-lived efforts of the League of the Physically Handicapped already mentioned; another included the Disabled Miners and Widows, which teamed up with The Black Lung Association to reform the UMWA (United Mine Workers of America) and pass the federally supported Black Lung Benefits Act of 1973 (Nielsen 2012, p. 159).5 Parents of children with disabilities also worked together to pass landmark legislation in education, starting with the Education for Handicapped Children Act of 1975. These political coalitions demonstrated the value of organizing around shared experiences of discrimination, rather than specific disabilities, and the impact of that collaboration on the credibility of their claims.

The Independent Movement in Berkeley, California, also required collaboration among people with disabilities who rejected institutionalization as the government’s go-to solution for disability and sought, instead, to assert themselves as reliable, creative sources on their own personhood. A cross-disability coalition led the infamous “504 Sit-In” outside The Department of Health, Education, and Welfare (or HEW) building in San Francisco in 1977. The group of approximately 150 disability rights activists, supported by other civil rights groups like the Black Panthers, occupied the federal building for nearly a month to put pressure on President Jimmy Carter’s administration to sign Section 504 of the Rehabilitation Act, an anti-discrimination policy which had yet to be enforced since the passing of the act in 1973 (Schweik 2011, n.p.).6 This particular victory paved the way for the 1990 Americans with Disabilities Act, with the help of other cross-disability coalitions who “claimed” and affirmed their shared disability identity (Linton 1998, p. 12).

Arguably, cross-disability coalitions successfully pushed policies that created opportunities and legitimized discursive spaces (e.g., legal, political, social) for people with disabilities to generate knowledge, action, and understanding in pursuit of a just society. The collaborations themselves were inventive, and they opened opportunities for continued ethotic discourse. As what was eventually evident, policies that highlighted accessibility and accommodation often lumped the “disabled” into one homogeneous group. Recognizing this tendency, the disability community—true to its ethotic commitment—sought to complicate their shared disability identity.

The ADA depended largely on the advancement of the “social model of disability” which painted a problematic environment, rather the “problems” of disability, as the source of disability limitation and exclusion. This model, while important, did not fully capture the ways disability experiences challenged ableist norms, structures, and values. Almost two decades after the passing of the ADA, Tobin Siebers offered a nuanced theory of “complex embodiment”, that “understands disability as an epistemology that rejects the temptation to value the body as anything other than what it was and that embraces what the body has become and will become relative to the demands on it, whether environmental, representational, or corporeal” (Siebers 2008, p. 27). Siebers articulated a view of disability, one that we argue was already nascent in disability discourse, in which disability “re-invents” itself and its environments as it interacts and interplays with various milieus. According to Siebers, and those who agreed with his assessment, a theory of complex embodiment captured the ethotic essence of people with disabilities. The resonance with this view of disability is evident in the work that actively sought disability perspectives/knowledges/experiences through intersectional approaches, first-person narratives, and other artistic expressions. Collectively, these efforts not only challenged ableist assumptions that displaced disability, but also nurtured a disability culture that the Americans with Disabilities Act of 1990 did not explicitly reference (Brown 2015, n.p.). In effect, the community turned inward and called on its members to insert, affirm, and pronounce their diverse experiences of disability, with the faith that these (inter)actions would continue to advance the movement and reinvent the world in which people with disabilities live.

Kimberlé Crenshaw introduced the concept of intersectionality to explore how issues of power affected one’s lived experiences through a variety of overlapping contexts, including disability, sexuality, race, class, and gender (Crenshaw 1991, p. 1245). Disability scholars picked up Crenshaw’s seminal theory to show how disability was only one part of our social fabric; and it was complicated by several other factors. The disability justice performance project, Sins Invalid, puts this dual imperative well with the statement, “All bodies are caught in the bindings of ability, race, class, gender, sexuality and citizenship. We are powerful not despite the complexities of our identities, but because of them” (Berne 2018, p. 230). Collective action, then, is based on multifaceted experiences and understandings of disability. Intersectionality not only increases our understanding of disability, it also provides more “tools” for dismantling multiple structures and processes of injustice. Indeed, the increased call for intersectional approaches in the years following the passage of the ADA implicitly and explicitly recognized the limits of policies based on a cross-disability identity and sought to expand the scope of disability’s influence on sociocultural norms (e.g., Vernon 1999; Garland-Thomson 2005).

Expressions of intersectional, lived experiences take many forms. First-person narratives offer one way of transferring meaning into the hands of those whose stories are being told. First-person narratives provide “a literature of witnessing” that resist normative and ableist constructions of disability experiences (Siebers 2008, p. 47). The subjectivity of first-person accounts are a way to validate disability experiences from the perspective of those living them and to disrupt the march of meaning traditionally sourced from charitable, medical, and scientific communities (Couser 2000, p. 309).7 Notably, Audre Lorde’s (1980) first person account of chronic illness and disability, Laura Hershey (1993) and Evan Kemp’s (1981) perspectives of charitable fundraising events, and Harriet McBryde Johnson’s (2003) reflections about the right to life are a sampling of the seminal first-person narratives that have brought disability perspectives into the public sphere in illuminating ways. In 1999, Michael J. Fox demonstrated the efficacy of embodied lived experiences to push forward disability perspectives when he opted to not take his medicine before testifying in front of the U.S. Senate Appropriations Committee for increased government funding for Parkinson’s research (Michael J Fox Testimony Before the Senate 2013). His speech was lauded for its inventiveness, insistence, and persuasiveness and helped build a credibility later dubbed “The Michael J. Fox Effect” (Quackenbush 2011).

Performance troupes that provide artistic access to people with disabilities also contribute to the distribution and increased engagement with varied disability experiences. Phamaly Theater Company, Theater By The Blind, and the Axis Dance Company were all founded in the late twentieth century to give people with disabilities access to performance and its myriad of possibilities. Performance troupes take an active, affirmative response to oppressive social systems and relations of power through the naming and challenging of disability constructions. Disability performances provide a vulnerable, embodied critique that offered audience members a new way of imagining the future of disability in the arts and, just as importantly, outside of it. Performance generates new meanings and spaces where “knowledges [can] be re-examined” and often provide a method and mode of dismantling stereotypical representations of disability (Kuppers 2003, p. 3).8 In essence, performance generates a new way of interacting with, and in relationship to, other disabled and nondisabled bodies.

Historically, the disability rights movement mobilized around a cross-disability identity that was especially effective in asserting change. People with disabilities discovered that they were stronger together and could use their collective power to push against the societal structures that had long inhibited them. The further development of the movement and the enrichment of disability culture, however, required the expression of even more varied lived experiences. The sharing of lived experiences through an intersectional awareness, first person narratives, and performance are some of the ways people resist ableist assumptions, generate understanding, and foster a rich disability culture. These practices are very much alive today: as Steven Brown pointed out, a rich culture enables people with disabilities to “generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability” and to have those expressions viewed, valued, and incorporated into the public imagination (Brown 2015, n.p.). In effect, disability culture “invents” (i.e., illuminates and articulates) spaces and identities in public discourse that enriches society and expands what is possible.

4. Inclusion: Pursuing Social Justice

The language of disability inclusion draws from social and political theories seeking an equal and participatory environment that embraces a plurality of perspectives (see, for example, Young 2000). At stake for people with disabilities are opportunities to participate in political agenda-setting, to see themselves in cultural spaces, and to authorize their own experiences. Yet, it is not enough “to be included” in spaces where people with disabilities traditionally have been barred. In their critique of contemporary inclusion practices, Eileen Hyder and Cathy Tissot argued that inclusion efforts “can represent a surface approach to inclusion, rather than the true ethos of what is meant.” The “true ethos” they reference includes the promise of disability participation to bring about social justice and alter oppressive systems that exclude in the first place (Hyder and Tissot 2013, p. 12). Or otherwise stated, inclusion represents the invention of a disability ethos in previously inaccessible spaces/practices, but remains only a “surface” endeavor when the spaces/practices remain unchanged by disability participation.

The possibilities of inclusion are evident in conjunction with every child’s right to a “free and appropriate education”, as is designated by the Individuals with Disabilities Education Improvement Act (IDEA Individuals with Disabilities Education Act 2019). Inclusion under IDEA/DEA represents an intentional effort to reduce the stigma associated with disability. The inclusive education ideal is described by the National Center on Inclusive Education as “characterized by presumed competence, authentic membership, full participation, reciprocal social relationships, and learning to high standards by all students with disabilities in age-appropriate general education classrooms, with supports provided to students and teachers to enable them to be successful” (National Center on Inclusive Education 2011, p. 1). Curt Dudley-Marling and Mary Bridget Burns identify proactive inclusion efforts as part of a “social constructivist” perspective that endows students with disabilities the “presumption of competence” and confidently views all children, regardless of their differences, as clever, capable learners (Dudley-Marling and Burns 2014, p. 24).

In practice, however, the social constructionist view regularly collides into a “deficit perspective” of inclusion enabled by the continued existence of general education and special education classrooms. Inclusion is presented as a way to move the marginalized—the underserved, disadvantaged, and oppressed—colloquially, “from the margins to the mainstream.” Yet, as scholars point out, this move assumes that people on the margins, such as students with disabilities, are naturally excludable (Baglieri et al. 2011, p. 2123).9 From a “deficit perspective”, inclusion is the process of remediating or compensating for these deficits in a “more inclusive” setting (Dudley-Marling and Burns 2014, p. 24). These actions concretize a hierarchy between the “normal” students and the outliers who are “being included” (Dudley-Marling and Burns 2014, p. 24). Additionally, the pervasive perception that special education teachers are “special” (e.g., unusually patient, kind, tolerant) reinforces the idea that people with disabilities are hard to teach and difficult to assimilate into a mainstream classroom (Lalvani 2013, p. 21).

Positioning inclusion as the bridge between general and special education reifies the idea that inclusivity is a choice or an approach to disability, rather than the right of people with disabilities (Baglieri et al. 2011, p. 2125). Some educators mistakenly perceive special education as a contained “place”, of being in the same place at the same time, rather than as a service that could be provided anywhere (Lalvani 2013, p. 25; see also, Beratan 2006). This view also limits how student skills are characterized: consider, for example, the idea that children must earn their place in an inclusive classroom through intelligence and good behavior (Lalvani 2013, p. 19). This perspective further paints inclusion as achieved, rather than the inalienable right of people who have disabilities and the right to be educated.

In light of continued systematic oppression and misunderstanding, Lalvani suggests that the language of social justice replace and/or accompany inclusive education practices (Lalvani 2013, p. 25). Inclusion efforts often recognize the ethos of people with disabilities and seeks to invent spaces that welcome such people, but social justice discourse expands the dialectic to emphasize that those spaces can and should change as a result of disability participation. A social justice approach means calling on educators for increased flexibility and a co-constructionistic attitude in classroom instruction. In this view, planning is not an autonomous endeavor on the part of the instructor, but requires instructor prioritization of communication and negotiation with people with disabilities—upfront and often. Jay Dolmage argued that in classroom planning the “inclusion of each individual in the discussion forever changes that discussion” (Dolmage 2008, p. 23). Dolmage’s insights compliment Hyder and Tissot (2013, p. 2) and Lalvani (2013, p. 21) in adopting the language of social justice in order to emphasize disrupting societal norms and promoting structural change in educational and social contexts. Inclusion, in this critical paradigm, is a steppingstone for actualizing a disability epistemology that “turns experience into expertise” (Nijs and Heylighen 2015, p. 147). These discussions go beyond the classroom to consider how inclusion practices, framed by a social justice imperative, promise not only belonging, but also change.

Although our essay highlights educational settings as a place where an ethos of invention has shifted the conversation from inclusion to social justice, it is important to note that a similar shift has and is occurring in other aspects of society. For example, the circulation of problematic disability images has had a profound othering effect on disability, with the visual spectacle of freak shows, pseudoscientific eugenics, and charity advertisements putting the disabled body in the public eye, but imbued with ableist interpretations of disability as something to cure, take care of, overcome, or fear (see Garland-Thomson 1997, 2001, 2009; Gilman 1982). Disability advocates who engage in the “politics of appearance” (Garland-Thomson 1997, p. 22) create counter-imagery that dramatizes disability in more varied, experiential, and empowering ways. The intentional participation of people with disabilities in their own representation stimulates public conversations about unmet disability needs, disability rights, and disability’s (re)newed place in society. For example, we can see these changes in expressive spaces for sexuality and desirability, like the fashion industry, which has traditionally excluded people with disabilities. The rise of disabled models, designers, and fashion bloggers are destigmatizing disability and assistive devices, and influencing the industry to more creatively consider the bodies and identities of the consumers to whom they sell their products (Pullin 2009; Vainshtein 2012).

Calls to include disability in historical studies of the United States operate along a similar assumption that the addition of disability does more than add information; it changes our understanding of history, past actions, and dominant ideologies. As Douglas Baynton explained, disability is a “cultural construct to be questioned and explored”, for “[i]t may well be that all social hierarchies have drawn on culturally constructed and socially sanctioned notions of disability” rather than on the “natural” hierarchies that presume the pages of our history books (Baynton 2017, p. 31). Specifically, history is mired in “ideologies of American individualism” (Russell 2011, p. 199) that paint people with disabilities “as embodying that which Americans fear most: loss of independence, of autonomy, of control” (Longmore and Umansky 2001, p. 7). These conceptions of disability remain relatively unquestioned and uninterrogated in historical accounts. Rewriting U.S. culture, then, means rewriting the ableist norms that continually devalue disability in order to justify inequality. In exhuming disability as a cultural construct, the U.S. can see the role ableism played, for example, in the oppression of women, the justification of slavery, and the discrimination of immigrants judged (Baynton 2017). Indeed, discussing disability through the lens of social justice furthers the pursuit of justice for other marginalized groups whose liberation is connected to society’s understanding, treatment, and engagement with disability.

5. Conclusions: Disability Inventions and (Re)Inventing Disability

Central to the disability rights movement is epideictic discourse that affirms and celebrates the expertise of people with disabilities in their own self-definition, self-determination, and awareness of ableist attitudes and environments that create barriers to these expressions. Signs of a disability ethos of invention were already nascent in social movements of the early twentieth century, and they fortified the movement as it grew in numbers and influence over the next hundred years in the United States. Rehabilitation, accessibility, and inclusion are approaches that engage with notions of invention. A disability ethos of invention that includes disability perspectives has the potential to radically change society and disability’s place in it. After all, ideology is best critiqued by those—like the disabled—who are excluded from its logic (Siebers 2008, p. 14). This ethos explicitly and implicitly purports that disability experiences (physically, environmentally, and culturally derived) are generative loci of knowledge, understanding, and ways of being.

In this essay, we recounted an anecdotal history of dominant practices designed to advance the rights of people with disabilities under the umbrella terms of rehabilitation, accommodation, and inclusion. These practices improve conditions for people with disabilities, but are also critiqued for falling short in how they engage disability perspectives and experiences. A disability ethos of invention is evoked when practices are perceived as reinforcing ableist norms, temporality, values, and systems. A disability ethos of invention centers disability’s potential to transform society, unearth knowledge, and create a just world for people with disabilities. For example, as we have discussed, early twentieth century workers resisted the prevailing definition of bodily normalcy that guided popular rehabilitation practices, demanding that the workplace change to accommodate the needs and wants of people with disabilities, rather than the other way around. Although these efforts failed to question the conflation of worth with economic sufficiency, they opened a door for people with disabilities to challenge ableist norms. A few decades later, people with disabilities discovered the power of cross-disability alliances to gain favorable political change. Yet, these measures relied on a homogenous understanding of disability, and disability circles responded with a call to balance the power of uniting together with attention to intersectional identities and experiences. Theories of inclusion sought a more equal and participatory society for people with disabilities. Yet, again at times, inclusion practices reduced the movement’s goals down to simply “being included” in education, in representational structures, and in the annals of history. Demands for social justice emphasized how inclusion is only truly achieved when it changes normalized, naturalized sociocultural conceptions of disability in public discourse.

A disability ethos of invention asserts that differences produce perspectives useful, not only for the lives of people with disabilities, but also society-at-large. It adopts the stance articulated by Siebers (2008) that a complex understanding of embodiment amplifies the expertise of the disabled body to teach us about human variation. A disability ethos applauds and helps in “establishing imperfect, extraordinary, non-normative bodies as the origin and epistemological homes of all meaning making” and, consequently, embraces varied forms of communication and expressions of identity (Dolmage 2014, p. 19). It allows us to explore the ableist assumptions that underscore our interpretations of a person’s abilities, or even more profoundly, as Amanda Baggs (2007) argued, to challenge how society defines personhood. It encourages the experiencing of the world by using different senses and by increasing our reflective awareness of our bodies in different environments. It emphasizes that disability challenges the naturalized correlations between body, language, and society. In sum, a disability ethos of invention puts people with disabilities in an empowered position to identify past injustices, change the present, and pursue future liberations.