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Because research that informs policy and curricular development within these areas of education leaves out individuals labeled with intellectual disabilities, or fails to consider cognitive ability diversity, it endangers and even impedes the well-being, safety, social belonging, and status of labeled individuals as citizens. Efforts to challenge the status quo of research and practice in education around civic and sex education for and with individuals with intellectual disabilities requires engaging with the lived experiences of individuals labeled with intellectual disabilities, whether as sexual beings or as members of the polity. Such a move requires a comprehensive shift in how research is conducted and how individuals with intellectual disabilities are seen as epistemic agents. People labeled with intellectual disabilities must be included as active participants within rather than passive objects of educational research. At minimum this entails the active and respectful solicitation of their experiences and social meanings to inform theory and research, policy making, and curriculum development. Doing so is a matter of producing knowledge that promotes conditions of social justice and epistemological progress. Acknowledging and correcting epistemic injustices done to individuals with intellectual disabilities would be a first step in addressing such problems of exclusion. Of course, doing so will involve deeply transformative measures, including breaking down institutional and academic barriers that segregate individuals with intellectual disabilities, developing broader understanding among scholars of intellectual disability as a construct, and integrating ethical standards for researcher practices in various fields that are informed by individuals with intellectual disabilities. Perhaps foremost, however, it requires educational researchers to commit themselves to the view that ethical educational research cannot take place in a context wherein the notion of people with intellectual disabilities as researchers is outright laughable.

Pettinicchio et al, 2022

Although fair-ML treats bias as the product of inaccurate input–output relations and training data, decisions about how to reduce bias are normative issues, not technical ones. Choices about which kind of algorithmic fairness to implement—anti-classification, calibration, classification parity, and so on—are intrinsically value-laden because they shape what AI designers consider to be a biased outcome. As such, it is unclear how to assess competing fair-ML strategies without appealing to normative reasons. For instance, since letting some criminals go is preferable to punishing innocents, data scientists predicting recidivism risk should be more concerned with false positives than false negatives. Yet, equalizing false negatives seems more important for AI hiring because approved candidates still face additional interviews while those screened out have little redress. At the same time, post-hoc measures for uncovering false negatives in hiring tests, such as approving a random set of lower-ranked applicants, would be much more difficult to justify in the context of recidivism. Narrow focus on abstract proxies for equality denies one the information required to evaluate the merits of different fairness standards. To define fairness as a formal constraint divorced from normative commitments and social context is to commit a category error. The difficulty of using solely technical means to secure normative ends points to broader issues with fair-ML, raising questions about how we should understand disability and fairness in light of structural ableism. Algorithmic ableism To optimize for fairness and make data portable despite the black box, disability status often is modelled as a one-dimensional variable. This tendency to abstract away environmental and social context artificially limits categories of disability and obscures the process of measuring it. In doing so, AI design unintentionally can reinforce both the form and content of the medical model of disability. By omitting the value-laden decisions involved in operationalizing disability, fair-ML flattens variations in the intensities and kinds of people’s disabilities and further marginalizes those at the intersections. Analyzing the normative commitments of this approach highlights the importance of considering a wider array of ethical concerns beyond training data and input–output relations. When data scientists tackle open-ended goals such as diversity in hiring, they must translate contested models of disability into a single target that can be measured and adjusted in the black box (Selbst et al., ). As such, bias mitigation requires rendering concepts like protected class status amenable to quantification so discrete weights can be ascribed to them. For example, Pymetrics adjusts its AI to satisfy the 4/5ths rule by assessing if scores differ based on neatly defined categories of gender, race, and age (Yoo, ). HireVue, which uses natural language processing to analyze the content of applicants’ speech during automated interviews and gamified tasks, makes similar claims (Zuloaga, ). As part of this process, HireVue explicitly designs their questions in order to elicit readily quantifiable responses (Larsen, ). AI vendors often idealize abstraction since removing context-specific data can help algorithms function more accurately across a variety of settings (Selbst et al., ). However, accuracy is hampered by the fact that most data about disabled people are not comprehensive, without comparability, and low quality (Altman & Rasch, ; Maritz et al., ). As a result, gathering more disability data and designing a shared system for classifying it plays an important role in bias reduction. Since optimizing for fairness can reduce accuracy, collecting high-quality disability data could help mitigate bias stemming from unrepresentative datasets (Chen et al., ). While better representation in training data is necessary to secure just outcomes, disclosing one’s disability status can lead to data misuse and expose one to further discrimination. However, even if people could provide information about their disabilities without fear of repercussion, what it means to identify as disabled is not always straightforward. It is not simply that some disabled people are understandably reluctant to disclose, but that if and how they identify depends on the model of disability and type of measurement at hand. Researchers have found that how people define their disabilities—if they identify as disabled at all—is predicted by a wide array of factors, such as the type of inquiry (Brown & Broido, ), intensity and stigma (Bogart et al., ), and environmental context (Santuzzi & Waltz, ). A host of other factors, such access to an official diagnosis, internalized self-doubt, and whether one’s disability is (in)visible also plausibly affect self-identification. Other studies suggest that whether and how one identifies impacts the types of bias encountered (Nario-Redmond et al., ), methods used to navigate them (Nario-Redmond et al., ), and levels of self-esteem (Bogart, ). These different understandings of disability not only call for distinct types of measurement but also are correlated with distinct outcomes. For example, official medical diagnoses seem to be good predictors of access to health care while self-identification likely is a better proxy for group and political affiliation. Data scientists cannot operationalize disability status as a single, binary variable because the category’s nature and boundaries are not self-evident even among people who seem to fit within it. While definitions of disability are fiercely contested, the ways in which disability data are collected and become legible to AI lend disproportionate weight to the medical model of disability. Given that disclosing disability status can open one up to further discrimination, disability is often quantified only when the situation demands proof of it, e.g., to make an insurance claim, secure a diagnosis, or receive treatment. Aspects of other models of disability, such as social attitudes and built environment, are difficult to measure and, when people have a chance to self-report, they typically are limited to the binary categories of census and actuarial forms. As a result, data scientists seeking to make use of what little disability data exists often turn to information gathered and stored in a narrow range of contexts and formats. In turn, the processes of selecting proxies, generating labels, and curating datasets tend to translate disability into concepts amenable to the medical model. That is, algorithms end up assessing disabled people through a lens that defines disability as a biological dysfunction isolated from structural ableism. Abstraction deprives AI designers of the information required to operationalize disability status as anything but a biomedical dysfunction. One need not deny disability’s material aspects to recognize that adopting an entirely medical understanding of disability crowds out analysis of the socio-political processes that inform it. After all, that disability becomes legible to AI in terms of measurable diagnoses does not entail that AI is objective but highlights its alignment with the medical model. For example, if disabled people score lower on a given pre-employment test, to operationalize disability without accounting for the ableist structures at the root of that performance gap cannot help but attribute that gap to bodily failures. Similarly, once social context is omitted, one can no longer appeal to hiring bias to explain why irregular eye contact adversely impacts employability, shouldering disabled applicants with that responsibility instead. Because disability cannot be reduced to biological facts, abstracting away information about one’s built environment and social context is inaccurate and renders structural ableism benign. However, efforts to remove context from or quantify aspects of disability sheds light on the value-laden nature of ostensibly objective AI design. After all, the notion that one’s competence can be understood apart from the setting it occurs in is hardly a neutral one. For instance, some researchers studying performance assessments argue competence can only be assessed in situ since it is intrinsically contextual and shifts in response to dynamic, complex workplace environments (Cate & Regehr, ; Govaerts & van der Vleuten, ). To focus solely on quantitative aspects of performance risks omitting information regarding, e.g., interactions between chronic fatigue and irregular work schedules, or moldy buildings and asthma flare ups. That such factors are often removed from AI models while more quantifiable traits are treated as legitimate markers of ‘fit’ is not objective but shaped by ableist norms. For example, while studies show that disabled people perform similarly on many aspects of employability (Houtenville & Kalargyrou, ; Lindsay et al., ), automated interviews often place great stock in easily measured factors such as a measured tone and eye contact (Whittaker et al., ). As such, assessing applicants primarily in terms of abstract, quantitative factors does not preserve objectivity so much as obscure the underlying assumptions of AI designers. By evaluating hiring outcomes for disabled people based on factors that do not resist quantification, fair-ML omits more nebulous aspects of disability and makes it difficult to identify the ways in which structural ableism shapes data. Consider that while sentencing decisions hinge on many factors, recidivism risk has been measured disproportionately. Researchers have noted that this focus disposes algorithms such as COMPAS to assess sentences in ways that prioritize incapacitation over, e.g., retribution and rehabilitation (Green, ; Selbst et al., ). Similarly, imagine a hiring algorithm that predicts employability based entirely on quantifiable traits, like employment gaps, requests for medical leave, or expected cost of reasonable accommodations. Even if designers omitted explicit references to disability, such an AI would subtly emphasize correlations to disability status without providing important context or explanation. By prioritizing quantifiable aspects of disability over those not so easily measured, fair-ML configures and restricts our understanding of and responses to algorithmic bias. While inclusive data collection practices might better capture the contexts disabled people navigate, they would struggle to assign static values to them due to disability’s dynamic and shifting nature. Given that AI designers assign and modify discrete weights to features in their models, algorithms evaluate populations in terms of several snapshots taken at certain times instead of gradually emerging outcomes, they can end up entrenching injustice. For example, hiring AI that select applicants based on similarity to previous employees may not adapt to increases in workplace diversity, thus perpetuating bias. Moreover, since disabilities such as chronic pain, asthma, depression, and so on tend to wax and wane day-by-day or over one’s life, modelling people’s capacities in terms of a single binary dimension imposes artificial fixity. One’s performance on a pre-employment assessment cannot be understood in isolation from whether, to give an example, their chronic pain is flaring up that week. It is not just that experiences of disability are inseparable from their contexts, but that disabilities are embodied in shifting ways that cannot be captured by one variable. Although two people might receive diagnoses for the same disability, how they experience that disability and the degree to which it impacts their lives might vary immensely. By removing context and assigning discrete values to disability status, algorithms flatten differences between and within disabled people. The difficulty of operationalizing disability in AI raises similar concerns about membership in other protected classes, many of which also are modelled as binary variables to facilitate de-biasing. Although the sheer multitude of disabilities and historical shifts in their boundaries shed light on the category’s instability, disability is deeply entangled with other aspects of identity. Race, gender, class, and so on intersect and overlap with disability in ways that generate distinct forms of structural discrimination that cannot be reduced to their component parts (Crenshaw, ). Crucially, intersectionality does not entail that disability is neatly analogous with other identities but that the institutions, structures, and norms shaping them are co-constitutive and mutually reinforcing (Erevelles, ). Given that fair-ML optimizes for fairness with respect to protected attributes in isolation, it artificially separates intertwined aspects of identity, which disproportionately impacts those at their intersections. For example, research has found that facial recognition algorithms exhibit higher error rates when classifying the faces of darker-skinned women than could be explained by either race or gender alone (Buolamwini & Gebru, ). Initiatives promoting more inclusive datasets and fair outcomes must reckon with the fact that classifications and the authority to shape them are mediated by discriminatory structures. Indeed, whether one receives legal recognition as disabled is impacted by intersections with these structures, as multiply marginalized disabled people may struggle to secure access to the category itself. For example, given the price of healthcare, the ability to obtain a diagnosis from the medical institutions that AI researchers often collect data from is unevenly distributed. Similarly, certification of disability status is mediated by other biases, such as many physicians’ undue skepticism about women’s experiences of chronic pain (Mingus, ) and the false belief that black people have an unusually high pain tolerance (Erevelles, ). Given that intersecting axes of oppression impact one’s ability to claim disability status, the few disabled people officially recognized as such in training datasets seem likely to be disproportionately wealthy, white, and male. Data scientists cannot merely tack disability on to a list of isolated protected classes since their intersections affect who ‘counts’ as disabled. Instead, they should attend to the ways in which subjective decisions and structural hierarchies impact AI design, situating experiences of disability in their context. Disability justice Rather than attempting to promote fairness solely through technical adjustments to training data and input–output relations, data scientists should take up a disability justice approach. This view acknowledges that factors such as error rates and accuracy are necessary but insufficient to understand, identify, and address algorithmic bias. Disability justice serves as a framework for reasoning about how ableist structures and norms subtly configure and restrict the ostensibly objective aspects of AI design. A deeper analysis of disability and capacity not only draws attention to the value-laden nature of design processes but illuminates how data analytics and machine learning help to define and redefine those concepts. Instead, a disability justice approach suggests drawing a wider circle of considerations relevant to AI ethics; centering analysis of assumptions and values in design; closing gaps between stakeholders; and pursuing policies that empower further activism. Disability justice calls into question fair-ML’s dogged quest for objectivity and failure to confront broader socio-political norms, demanding that data scientists attend to the subjective choices intrinsic to algorithm design. This shifts from a sole focus on technical aspects of design—such as input–output relations and training data—and expands the problem space to include the social responses and outcomes that algorithms generate. While data scientists need not abandon technical considerations, these decisions must follow from an analysis of the normative choices that go into, e.g., generating classifications, formulating problems, labelling data, and selecting proxy variables. That is, designers should take a broader socio-technical perspective, which considers systems as not merely technological but enmeshed with embodied, organizational, social, and political factors (Simon et al., ; van der Bijl-Brouwer & Malcom, ). By considering how these dynamics interact and affect AI design together instead of assessing them in isolation, data scientists can better conceptualize, identify, and respond to biased algorithms. For instance, by reflecting on values woven into targets like ‘fit,’ one can parse out legitimate indicators of employability, such as word choice, from ones steeped in ableist norms and unrelated to performance, such as speech patterns and tone. Widening the circle of factors considered relevant to ethical AI design beyond data and input–output relations not only alters design processes but also renders thinkable a wider range of alternatives. Looking beyond the optimization of technical fairness criteria intervenes in solutionism and reveals a variety of other mechanisms for combatting bias and promoting social transformation. Notably, this gives us the tools to situate algorithms in a socio-technical context and raise the question of whether algorithms are appropriate instruments to measure and shape certain domains in the first place. For instance, given concerns about algorithms’ ability to capture shifting, contextual aspects of disability, what amount of discretion should they have over disabled people’s hiring outcomes, if any? While simply omitting groups from algorithmic models would exacerbate inequality, there may be reason to be much more skeptical of their inferences. Already, protests by Google employees about collaboration with the Departments of Defense and Homeland Security on Projects JEDI and MAVEN (Wakabayashi & Shane, ) and pledges by computer science students to refuse work at Palantir in light of its cooperation with Immigrations and Customs Enforcement (Birnbaum, ) point to the ways in which data scientists can affect change beyond the algorithm itself. As such, disability justice indicates that we ought to expand the scope of AI ethics and situate algorithms in their socio-technical context. Moreover, a disability justice approach suggests that data scientists should critically analyze the ways in which disability is defined, measured, and labelled. Given that most data about disability are medical, inferences from them typically are limited to the medical model, reducing disability to a biological dysfunction. Yet, by drawing on disability scholarship, we can uncover the ways in which these categories shift and trace their roots to ableist assumptions. For instance, consider proposals to increase the amount and quality of disability data by drawing from people’s electronic health records. While well-intentioned, these efforts would further entrench the medical model of disability, leave little room for self-identification, and underrepresent disabled people who lack access to health care. Making explicit the ways in which algorithms model disability creates space to imagine it differently through methods like value-sensitive design (Friedman & Hendry, ; Simon et al., ). Such an approach melds conceptual, empirical, and technical elements, e.g., assessing models of disability in terms of their assumptions, impact on data gathering, relationship to outcomes, and so on. In so doing, data scientists could better attend to the ways that different models influence people’s claims about their disabilities and how those claims are mediated by intersecting hierarchies of class, race, and gender. By investigating how different definitions and measures of disability shape who ‘counts’ as disabled, data scientists can intervene in these ongoing omissions. This requires altering how disabilities are operationalized so they are defined not solely as medical diagnoses but also in terms of how people navigate institutions, norms, and each other. While fair-ML idealizes abstraction so that data can be applied across contexts, (in)capacities emerge from a multitude of contextual factors like competing values and built environments. Instead, a disability justice framework suggests that an algorithm’s accuracy does not always trade off with its ability to accommodate contingency because many disabilities are intrinsically situational and resist quantification. Implementing this approach might involve, e.g., assigning more weight to contextual factors, assessing how aspects of a given disability shift over time, and designing scales that are sensitive to social values and attitudes. For example, some researchers have demonstrated that disability data can be disaggregated to more easily study the variables that cooccur with certain disabilities or contexts (Brown & Broido, ; Peña et al., ). Others have called for analyzing how people’s capacities expand and contract in relation to built accessibility, office culture, and the type of labor at hand (Bennett et al., ). This suggests that data scientists could model disability differently by altering processes of data collection, label generation, and proxy selection so as not to abstract away its context. In addition, disability justice demands more fundamental shifts in access, communication, and ownership across the AI design pipeline. Indeed, the biases that hiring algorithms exhibit are inseparable from developers’ sole focus on employer values and widening asymmetries between firms and applicants. Although applicants’ ability to secure jobs is shaped by these AI, they cannot examine or offer input on them easily, if at all. Expanding opportunities for these engagements and removing barriers to access is essential to designing more equitable algorithms. Already, initiatives like Access Computing offer accessible training in computer science (Trewin et al., ) and groups like (Dis)Ability in AI provide support to disabled people at conferences about AI (Whittaker et al., ). Despite efforts to increase disability representation at design forums and in training datasets, the mere presence of disability is not enough to transform existing institutions and restore trust. That is, vendors must design with disabled people, not merely for them. As the scope of design expands, data scientists ought to draw insights from other disciplines, including disability studies and socio-technical design, and team up with a wider range of stakeholders. This process cannot simply tack on these perspectives but must integrate and consult with them throughout the design pipeline. By collaborating with a diverse array of disciplines and voices, data scientists could better identify stakeholders in AI hiring, explore their values and needs, study how AI might implicate them, and involve them in design processes. This bears similarities to a participatory design perspective, in which workers are empowered by directly influencing the design of technologies they will take up (Korsgaard et al., ). Using a variety of techniques—from prototyping and mock-ups to future-oriented workshops and scenarios—stakeholders reflect on the situation, imagine innovative solutions, and transform those speculative approaches into realistic, concrete alternatives. This might involve, to give an example, asking stakeholders to evaluate whether automated interviews that assess affect and gestures align with their values, what they communicate about disabled applicants, and how they might be navigated. In parallel, insights from disability studies suggest granting disabled people’s perspectives significant weight in debates about, e.g., generating labels and selecting proxies for disability status. For instance, developers might look to data platform co-ops operated by people with rare disabilities, in which they oversee the use of their data and share profits (Scholz, ; Treviranus, ), to inform their own decisions about responsible data use. By working alongside these other disciplines and voices from the start of the design process, data scientists could help bridge gaps in knowledge, foster a common conceptual language, and develop new research methods. Beyond expanding the scope of AI ethics concerns, redefining design values, and changing stakeholder dynamics, a disability justice approach suggests pursuing policy measures that can empower data activism. While legislation often lags behind advances in computing, existing regulatory uncertainty allows AI vendors to selectively endorse transparency and fairness criteria in ways that preserve existing arrangements. Greater transparency could help promote the conditions necessary for activists and data scientists alike to study, uncover, and contest algorithmic bias. Despite the explanatory difficulties associated with the black box, policies ought to be introduced mandating that AI developers regularly audit and disclose the purview, inputs and outputs, and limitations of their algorithms. For example, some have suggested requiring employers to make public the automated inferences they make about applicants (Hoffman, ) and tasking them with retaining detailed records of their bias mitigation procedures (Hoffman, ). Developing legislation to establish minimum standards for data transparency and disclosure of bias mitigation measures—even for opaque machine learning AI—is necessary to identify and make claims against discriminatory algorithms. In addition to setting baselines for transparent design and implementation, recognizing how ableist structures can affect people’s identification with and disclosure of disability status highlights the importance of more robust privacy regulations. Existing protections are ill-equipped to grapple with the ethical risks posed by automated hiring tools or predictions of disability status. The ADA (1990) only shields those who are disabled, treated as disabled, or were disabled, while GINA (2008) and HIPAA (OCR, ) protect health data while it is being stored, transferred, and analyzed by certain classes of covered entities. However, since these laws neither cover AI vendors and data brokers nor explicitly forbid discrimination based on inferred risk factors for disabilities, AI can circumvent them (Givens & Morris, ). Similarly, while the ADA prohibits discrimination in places of public accommodation, it does not explicitly include algorithms, social media platforms, and so on (Rothstein, ). Expanding existing privacy protections would help make disability disclosure less precarious and, in so doing, assist efforts to gather more representative datasets. Conclusion Advances in AI have the potential to transform hiring and labor but are ethically fraught and risk exacerbating ableist bias. While hiring practices that discriminate against disabled people long predate AI, myths of algorithmic objectivity, the difficulty of interpreting their inferences, and widening asymmetries in power and information threaten to further entrench those disparities. Indeed, even efforts to promote fair machine learning can end up abstracting away important context, reinforcing the medical model of disability, and imposing artificial fixity on disabled people. By engaging with the ways in which disability has been classified time and time again, we can begin to address the normative issues and assumptions at the heart of AI design. Centering disability can help expand our approach to algorithmic bias beyond narrow technical tools to frameworks that consider the structures, norms, and institutions in which bias emerges. Fair machine learning methods cannot by themselves address these concerns; instead, a genuinely accessible AI ethics must focus on the inherently social and political nature of AI. Such a framework raises issues of justice that cannot be answered through solely technical means. How can algorithms account for difference in ways that do not reinforce rigid systems of classification? How can marginalized populations forge coalitions and contest algorithmic outputs? What ethical, policy, and legal tools can be brought to bear to empower these efforts? Data scientists cannot merely include but must actively center the embodiments, lived experiences, and values of marginalized populations in these discussions. In this paper, I outlined a disability justice approach, which aims to expand the problem space of AI ethics; attend to the ways in which algorithms model disability; bridge divides between stakeholders; and pursue policies promoting transparency and privacy. Disability justice offers a promising framework for analyzing access and (in)capacity in algorithms and merits further consideration in ongoing debates about bias and fairness in AI.

One theme I return to within disability theory is that knowing is a communal project. This is an important corrective in the face of pressure to represent “the disability community.” (Sidenote: there are many diverse disability communities, and there are likely to be disagreements on some issues even within a single disability community.) We need affirmation from others in the face of dominant narratives that fail to accurately portray our experiences, and we need to learn from others when our experiences and understandings differ. We all have limitations in what we notice and how we make sense of the world.

There are a number of different concepts that have been developed to refer to knowledge accumulated within disability communities. I will mention a few of the more recent developments here. Leah Lakshmi Piepzna-Samarasinha, a self-described sick and disabled femme of color, notes that the terms “crip skills” and “crip science” are used by members of these communities to refer to ways that disabled people figure out how to navigate environments that have been designed largely around the presumption of typical bodyminds and knowledge grounded in lived experiences of disabled people.

My sense is that people generally think about disability as consisting of a physical or cognitive “deficit.” This raises all sorts of questions related to, for example, “epistemic oppression” — a form of oppression that occurs when people in positions of power assert that those who are disabled will only benefit from the people they deem as having epistemological expertise and as possessing “genuine” knowledge (very often those who are deemed “able-bodied”). And while it is important not to conflate the dynamics of epistemic oppression within the context of anti-Black racism, I think that it is important that we challenge the differential ways in which knowledge possession is assumed to be devoid vis-à-vis those who are disabled. Could you elaborate on how you understand epistemological oppression within the context of disability studies, and discuss how you conceptualize disabled knowers and the richness and complexity of their knowledge, and how their knowledge can transform epistemic forms of arrogance and hegemony?

There is a long history of disabled people being denied epistemic authority in regard to our own bodyminds and experiences. (I use Margaret Price’s term “bodymind” to emphasize the inextricability of the body and mind and the fact that many impairments are not readily apparent.) The Disability Rights Movement’s slogan “Nothing About Us without Us” is, in part, a challenge to epistemic oppression — which entails the assumption that disabled people are unable to make contributions to shared knowledge, as well as ways in which the disabled people’s knowledge claims are actively undermined. In spite of good intentions, nondisabled “experts” on disability have sometimes made the lives of their patients or students worse by privileging normalization. In other words, health care professionals and educators attempted to get their patients/students to look and function as closely to a mythical “normal” bodymind as possible (e.g., prohibiting D/deaf children from using sign language or forcing children with polio to walk rather than using a wheelchair). There is still an overemphasis on cure rather than helping people to figure out how to live with impairments and chronic illnesses.

As I discuss in “Epistemic Oppression and Ableism in Bioethics,” how folks go about trying to learn about disabled people’s experiences matters, because the type of approach determines whether one is promoting epistemic justice or undermining it. Drawing on the work of Toni Morrison, Audre Lorde and Iris Marion Young, feminist philosopher Nora Berenstain uses the term “epistemic exploitation” to refer to the phenomenon of privileged people pressuring members of marginalized groups to educate them, especially regarding their experiences of oppression. As Berenstain puts it, “The dominantly situated feign engagement with the marginalized but refuse to listen to them.” This form of epistemic labor is problematic, in part, due to the asymmetry between the social positioning of knowers but also because it (1) is an unfair demand on marginalized people; (2) is unlikely to be recognized; and (3) stands little chance of receiving proper epistemic uptake. I would suggest that it is better for those who want to gain a better understanding of disabled people’s experiences to engage with the work of folks who have chosen to take on this type of labor rather than asking disabled people they happen to encounter. This might sound obvious, but, in my experience, it isn’t.

Because we typically and mostly without thinking, frame disability as abnormal, negative, and an individual problem, then it follows that our response to it would be reactive rather than proactive. In other words, we accommodate disability. While this is an improvement over institutionalization, sterilization, and euthanasia, accommodations as a comprehensive response maintains the notion that access is a disabled individual’s problem to solve. On most college and university campuses, disabled students spend an inordinate amount of time establishing eligibility and requesting accommodations. Additionally, they are asked to perform a number of tasks to both schedule and receive accommodations. Oftentimes the rationale for this is self-determination and/or self- advocacy. While it is important for all students to learn to be responsible and assertive, identify issues, solve problems, and make decisions, why should disabled students be required to take responsibility for those access issues that are institutional problems? Why should the academic experience for disabled students be so different from their nondisabled peers?

(Debbie - “‘I’ve always felt these spaces were ours’: disability activism and austerity capitalism,” City 27:1-2, 2023)

Inclusive solidarities of care Springer’s emphasis on the capacity for direct actions to construct a prefigurative politics, based on the fellowship, reciprocity and equality enacted during them, is a point echoed by feminist scholars who argue that focusing on messy unpredictable sites of collaborative practices can illuminate possibilities for radical alternative futures (Kern and McLean 2017; Ruddick et al. 2018). This is demonstrated in the ways that DPAC organises its actions. Jeffries (2018) emphasised the importance of social reproductive processes, such as washing, cooking and caring, for enabling the 2011–13 urban protest encampments: but reproductive processes are necessary for even one-off street actions by disabled activists. Due to the range of physical impairments and multiple social barriers producing disability, DPAC needs to carefully plan strategies of mutual care in advance of its protests (Clifford 2020), from financial help for transport to physical assistance on site. The way that we organise a protest is always collectively and it’s very inclusive and accessible. So, we’ve almost got a microcosm of what future society could look like, because we have to be very interdependent and we work together. (Clifford) As such, DPAC are producing ‘micro-worlds of alternative urban relationships’ (Kern and McLean 2017, 418) by enacting ‘horizontal relationships and forms of organization that strive to reflect the future society being sought’ (Springer 2016, 287). These embodied practices are thus worthy of academic attention because they have the potential to constitute what is possible at scale, a potential that is captured by the description of these micro-practices as ‘worldmaking’ (Kern and McLean 2017) or ‘mondialization’ (Ruddick et al. 2018). DPAC’s model of collaborative care also helps shift the discourse of ‘dependency’, re-presenting it as a positive and progressive value. People with impairments are not excluded because of what they cannot do but instead the diverse skills amongst a solidarity group are recognised, supported and put to use for the common good, What’s great is we all bring different skill sets. Some are great with social media, some are great with direct action, some are great at talking to the media, some are great at lobbying MPs, some are great at doing research. It’s horses for courses, what you’re good at. (Peters) Significantly, DPAC centre their struggles on the reproduction of life, the right to reproduce the self and others, which feminists have argued is the ‘“point zero” of anti-capitalist, anti-patriarchal and anti-colonial struggle’ (Jeffries 2018, 580). Rather than emphasising the role of social reproduction in the exchange value of the capitalist relations of production, disabled activists centre its use value for the reproduction of the self and other (Vogel 2019). DPAC’s struggles for subsistence and survival therefore provide orientation for alternative visions of a post-capitalist society that privileges care over competition, collectivism over individualism and reproduction over production.

We can begin to center care work in the university. Leah Lakshmi Piepzna-Samarasinha defines care work as rooted in “a place where disability justice and queer femme emotional labor intersect.” 21 Piepzna-Samarasinha’s notion of disability justice is informed by Sins Invalid’s (a disability justice performance project) ten principles: intersectionality, leadership of those most impacted, an anticapitalist politic, cross-movement solidarity, recognizing wholeness, sustainability, commitment to cross-disability solidarity, interdependence, collective access, and collective liberation.22 Emotional labor follows Arlie Hochschild’s work, but for Piepzna-Samarasinha it acknowledges the ways in which this labor falls disproportionately on certain racialized, gendered, and queered individuals.23 I am not here arguing for the institutionalization of care work or for care work to replace service—though arguably many of us already perform care work within our service work—but, instead, for a reckoning with how care work is forced upon certain bodies: femmes, particularly femmes of color, queer and trans folk, sick and disabled folks. Once we reckon with this, we can see how care work is unevenly distributed and, yet, still important. Care work arguably functions as the work that keeps the university running, and those of us most impacted by the violence of the university use care work to keep each other within the university. What becomes a priority then is making sure our care work centers those we want to outlive the university rather than working to maintain the university. For example, here are some of the ways I have seen care work show up in the graduate student experience: editing papers for each other; sending each other highlighted readings; speaking up in class when we know others cannot that day; talking through theoretical ideas; talking through dissertation ideas; talking through micro- and macro-aggressions; 412 J. HATRICK talking about our lives outside the university; providing housing for each other; feeding each other; providing childcare or petcare for each other; de-escalating overreactions from people in positions of power; lending each other money; giving each other money; taking each other to and from the airport, doctor’s appointments, and vet appointments; starting mutual aid systems; sharing institutional history; sharing knowledge about which faculty have histories of racism or misogyny—including which have bragged about sleeping with their students; bringing each other groceries; taking each other on hikes and to beaches; banning academic talk for a few hours; providing feedback on syllabi; organizing potlucks and parties; making each other tea and coffee; and simply reminding someone you have their back in this process. Piepzna-Samarasinha advocates for recognizing these things as work, as skilled labor, and we know that this work is gendered, racialized, classed, and queered.24 Again, I am not arguing for the institutionalization of these skills but for, rather, a recognition that this work is done, an acknowledgement that it is time consuming, and an awareness that this is the work that keeps people in the academy. That, while we are working within an inherently violent structure that, in turn, exists within multiple violent systems, for many of us to survive, we must be doing care work—and we are doing care work. We must be caring for each other, and we must acknowledge the way this work is not evenly distributed. The university relies on exploiting our desire to do this work; historically underrepresented students are retained by other historically underrepresented students doing unpaid labor. Thus, we must approach care work by asking what deserves our care?25 How do we do care work to benefit our communities without benefiting the university? We must not give care to a violent system such as the academy, but to those who will ultimately destroy the academy. Maneuvering resources A further intervention we can make is maneuvering resources from the university to communities the university enacts violence upon. Faculty and students often discuss feeling powerless within academia as it currently functions, but this is not entirely true. Certainly, we have different access to power and different access to resources, but some of us do have access to the resources of the institution, including space, money, and labor. In terms of space, we often have access to physical spaces on our campus— or owned by our campus—that can be rented for free, we can offer meeting spaces to community organizations, we can form gardening projects, we can even work to return the land owned by the university to Indigenous nations. In terms of money, some of our programs, departments, or universities are extremely well funded. This money can be used to pay students and community members, provide food at events, and a myriad of other options that focus on redistributing the university’s wealth (in small and large ways) to poor and working-class individuals. In terms of labor, we can think about supporting student labor towards activism and community support through offering credit or research projects. We can also think about the flexibility of our own labor and skills—how can we focus our own labor in ways that benefit communities rather than the university? While our access to these resources hugely vary across academia, some of us have some power of maneuvering and redistributing those resources of space, money, and labor. Maneuvering resources allows us, in many ways, to care for students and the communities our universities exploit. These are just a few starting points and, while some of us may not be able to make any of them happen right now given our current access to resources, they are resources we can work to maneuver in the future. The university is ableist. One of the ways this ableism materializes is in how expectations around productivity are defined in relation to able-bodied, white masculinity. This can be seen in the gendered, racialized, and ableist difference in tenure/tenure track versus adjunct positions and tenure success rates. As noted by Laura Pulido, within the social sciences and humanities faculty at USC between 1998 and 2012, “91.9 percent of white men received tenure, but only 55.1 percent of women and minorities received tenure.” 26 At UC Berkeley, only 24 (1.5 percent) of its 1,522 full-time faculty are disabled—and the estimate that 4 percent of all faculty members across all institutions have disabilities is not much better (as this is well below the 22 percent for the general population).27 Does this mean able-bodied white men are inherently better at academia? Or are women, people of color, and disabled people held to higher standards? Chakravartty et al’s #Communicationsowhite and the nuanced responses to the 2019 NCA distinguished scholar controversy certainly suggest the latter to be true.28 Indeed, if, as Marta Russell and Ravi Malhorta argue, we understand disability to be “a socially created category derived from labour relations, a product of the exploitative economic structure of capitalist society;” 29 then, we can also see how the raced, gendered, and able-bodied structures of academic productivity also work to produce disability. Disabled people, women, and people of color often spend an inordinate amount of time trying to arrange for adequate work environments; for example, Joseph Grigely notes that he spends more time “trying to arrange for adequate sign-language interpreting” than preparing for conference presentations.30 What are we doing to stop this? What are we doing to reimagine productivity to create a university as a space for women, people of color, and disabled people?31 Our work is equally as important. Our work as academics should prioritize the lived experiences of those we share space with (and those we do not). Piepzna-Samarasinha writes of “centering sustainability, slowness, and building for the long haul.” 32 In some ways, this feels antithetical to academia, particularly the undergraduate experience, which is structured around student turnover. There are other scholars arguing for the slowing down of the institution, but rarely are these understood as arguments rooted in disability, gender, or racial justice.33 This, of course, has become intensified under the rise of COVID-19 and universities’ (inadequate) responses, with disabled folk, communities of color, and women bearing the burden of the pandemic and its consequences. The consequences of this result in a generalizing of an issue as affecting everyone equally when, in fact, ablebodied and minded people, cis men, and white people are affected the least, often even benefiting from the expectations of productivity. We must understand that the issue of unsustainable productivity not only worsens conditions for communities of color, disabled folk, and women, but is produced by white supremacy, ableism, and a structure of cisheteropatriarchy.

414 J. HATRICK Thievery A final method of deconstructing the university I want us, as academics, to think more about is thievery. Acknowledging that the university is founded on the stolen time, labor, land, and energy of femmes, people of color, Indigenous communities, the poor/working class, and other caregivers begs us to ask: what happens when we start stealing it back? Stefano Harney and Fred Moten state that, for academics wishing to subvert the violence of the academy, “the only possible relationship to the university today is a criminal one,” wherein one “sneak[s] into the university and steal[s] what one can.” 34 As Allegra McLeod discusses in her blog post “Toward Abolition,” Moten and Harney offer a double meaning: “they both condemn the wrong perpetrated by the university system and also exhort and celebrate a certain kind of redistributive conduct that the law condemns as criminal.” 35 This argument, as McLeod notes, is not just about redistribution, but about the goal of abolition democracy, wherein “the object of abolition” is not so much the abolition of prisons but the abolition of a society that could have prisons, that could have slavery, that could have the wage, and therefore not abolition as the elimination of anything but abolition as the founding of a new society.36 This begs us to begin asking: how do we take back our stolen time, labor, land, and energy to continue this process? How do we steal what has been stolen from us, not just for ourselves, but for our communities and the communities displaced by the university that we may or may not be a part of?

Disability, work and welfare i. Disabled people, employment and rights There is now universal agreement that disabled people are disproportionately disadvantaged in the labour market both nationally and internationally. Various studies from both official and unofficial sources consistently show that disabled people are far more likely to be unemployed and/or underemployed than nondisabled peers (Thornton and Lunt, 1997; OECD, 2003; 2006; 2010; WHO, 2011). In most western societies since at least the eighteenth century the meaning and organisation of work has been organised around a particular set of values and principles: the pursuit and maximisation of profit and competition between individual workers. Both effectively disadvantage and disable people with any form of impairment. But when work is organised around a different set of principles such as social necessity and interdependence people with impairments are included in, rather than excluded from, the workplace. For example, during the 1939/45 conflict hitherto excluded groups such as women and disabled people were drafted into the workforce at various levels by warring nations to aid the war effort. Immediately after the war ended much government effort was put into maintaining this situation due to the 'social obligation' (Thornton and Lunt 1995) felt towards these workers. But subsequently government priorities changed and labour market policies reverted to pre-war practices (Barnes, 1991; Roulstone, 1998; Russell, 2002). 8 Over recent years the meaning and organisation of work has undergone significant change. The intensifying globalisation of the world economy along with technological advances over the last half century has meant that many western societies have shifted from what Wolfensberger (1989) termed a ‘primary production' to a 'post primary production' economy. Therein agricultural and manufacturing industries have given way to human services as the principal source of economic activity and employment. Castells (1996) refers to this transformation as 'informationalisation' to reflect the new forms of production and power that has emerged. It is often argued that this 'mode of production' offers new employment possibilities for disabled people (Barnes, H. et al., 1998). Yet historically access to technology has never been evenly spread throughout the population, disabled or otherwise. Although information has taken on a value equalling that of the material products of industrialisation, questions of ownership and control are as relevant today as they ever were (Castells, 1996). This underlines the fact that whilst new technology, deregulation and more flexible production techniques enable some, for others they bring new and enhanced forms of exclusion and social isolation (Roulstone, 1998; Sapey, 2000; Sheldon, 2004). Indeed, whereas in the 19th and most of the 20th century an 'able body' was an essential prerequisite for paid labour and a 'non-disabled status', in the 21st century an ‘able mind may be more important’ (Barnes et al., 1999: 225). Therefore if people with impairments, and particularly those with ‘learning difficulties’ and ‘mental health’ problems are to participate in this 'post-industrial' workplace it is crucial that governments take a more interventionist role in how it operates. Certainly recently politicians and policy makers have adopted the language of inclusion, and posited what at first glance appear to be social model solutions to disability in the workplace. The rhetoric surrounding the introduction of the various anti-discriminatory legislative and policy measures at both the national and international levels provides a wealth of examples. But rhetoric rarely accords with reality and policy remains centred largely on the supply rather than the demand side of labour. Consequentially policies which target and highlight the functional limitations of individuals are prioritised and supported rather than those that address the social organisation of work. . For instance the British Government formally adopted a social model definition of disability in its report ‘Improving the Life Chances of Disabled People’ (Cabinet Office, 2005: 5). Yet Chapter 7 titled ‘Employment’ focuses exclusively on strategies to support disabled individuals into work, there is no discussion of how to tackle the various environmental barriers that pervade Britain’s labour market. Britain has had legislation prohibiting discrimination against workers with impairments since 1995. Analysis of case law (Ministry of Justice, 2010) shows a significant level of noncompliance with the employer’s duty, now under the ‘Equality Act’ 2010, following the abolition of the ‘Disability Discrimination Act’ in 2009’, to make ‘reasonable adjustments’ for disabled employees (Harwood, 2011). Since the 1970s there have been several international initiatives designed to address disabled people’s social exclusion. Two notable examples are the UN’s 9 ‘Standard Rules on the Equalisation of Opportunities for Persons with Disabilities’ (1993) and the ‘Convention on the Rights of Persons with Disabilities’ (2006). Both adopt a ‘human rights’, holistic approach to the problem of exclusion and both have items dealing specifically with employment. The former although comprehensive with 22 items covering medical and support services, education, employment, leisure and cultural activities was not legally binding and ignored by national governments. The Convention on the other hand is designed within an international law context and sets out the duty of nation states to protect disabled people’s human rights. It is said to be legally binding on any country that ratifies it. At the time of writing it has been signed by 149 countries, 101 of which have ratified it (UN enable, undated). Of the 50 articles covering all aspects of the human experience Article 27 states: ‘States Parties recognise the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain al living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities’ (UN Enable, undated). Whilst the Convention may be seen as a major step forward in the struggle for equality as it provides a comprehensive list of what needs to be done to eliminate disablism, there is little on how this is to be achieved by way of enforcement. As yet there is little sign that it has had any significant impact on securing disabled people’s individual or social rights within and across nation states (Jolly, 2010). This is not surprising since the rights based approach has yet to bring equality to other disadvantaged sections of the community in both rich and poor nations. This is because however they are defined: individual, social or human, rights are open to interpretation and context bound. Furthermore the notion of individual and social rights is the outcome of neo-liberal thinking and has little relevance to those living in non-western cultures (Miles, 2006). Even where appropriate laws exist challenging the denial of rights through the law courts is costly in terms of resources and time. The overwhelming majority of disabled people in all countries rarely have either. Moreover the legal route to equality does not challenge the established political and economic structures of capitalist societies. Therefore such an approach is unlikely to bring about the radical environmental and cultural changes needed to eradicate structural inequalities (Oliver and Barnes, 1998, 2012; Jones and Marks, 1999; Hahn, 2002; Russell, 2002). Major structural change is even less likely in the foreseeable future as a result of the succession of deepening economic crises that have dogged the world economy since the 1970s. This has resulted in a significant shift to the right by governments across Europe and North America and claims that excessive government regulation in the workings of the market and escalating welfare budgets are at the root of these problems. Hence solutions to these crises prioritise policies supporting finance capital and reductions in welfare spending in order to sustain and consolidate capitalist class interests and power. They are legitimated by a plethora of discourses about the importance of ‘individual freedom, liberty, personal responsibility and the free market’ and assertions that future prosperity depends on the creation of a good business climate in which financial institutions can generate 10 and maximise profit (Harvey, 2010). All of which does not bode well for the employment prospects of disabled individuals reliant on welfare and expected to compete for jobs in labour markets characterised by high unemployment generally and structured almost exclusively for a non-disabled workforce. ii. Rethinking policy, work and welfare The growing problem of high unemployment generally in both rich and poor states has led some social analysts to call for a further reformulation of the meaning and organisation of work. For instance, building on the work of Gorz Beck (2000) argues that a combination of factors including globalisation and technological innovation, have generated a far less stable labour market in which traditional skills are devalued, jobs lost, and welfare reduced or eliminated. He argues that to offset the inevitable social and political instability everyone must have the right to be included in a new work system. This will include movement in and out of paid employment and forms of self organised artistic, cultural and political ‘civil labour’ involving equal access to comprehensive social protection within the context of democratically organised local, national and trans-national networks of active citizens. But whilst much is made of the role of active citizens in this and similar analyses, little is said about the role of government, disabled people and/or their organisations. This is important since the experience of work instability and social exclusion has characterised disabled people’s work experiences for much of the last century, and that if this situation is to be resolved government intervention is fundamental. Indeed, government involvement in the way the labour market operates is not new nor is it confined to policies for disabled people. Throughout recent history all governments have played a major role in structuring and restructuring the labour market through grants and tax concessions for industrialists and employers in order to sustain economic growth and maintain political stability (Grint, 1998; Giddens, 2006). With regard to the employment of disabled people, as noted earlier, 'demand side' initiatives were implemented in many states during and immediately following the 1939/45 war to facilitate their inclusion into the workforce. Whilst the current global economic climate may prohibit national governments from addressing labour market infrastructures in the short term, there are several policies that could be introduced to address disablism in the workplace. They could, for example, set targets for all government departments and state organisations to achieve in respect of employing disadvantaged workers. In their dealings with the private sector they could use similar targets to enforce contract compliance. International and government sponsored funding agencies could provide grants to charities and NGOs controlled by disabled people whose track record in employing disabled workers puts the traditional voluntary sectors to shame. Additionally, removing large numbers of people from state welfare systems and into work would reduce public spending and help combat disablism in the workplace (Oliver and Barnes, 1998; 2012). This is not to suggest that all disabled people can or should be expected to work at the same pace as 'non disabled' contemporaries or that all disabled people can or should work in the conventional sense. To expect people with high support needs to 11 be as productive as non-disabled peers, is one of the most oppressive aspects of modern society. And to radically reconceptualise the meaning of work beyond the rigid confines of waged labour is not unprecedented in the modern context. For example, in their efforts to assert the role of women in a predominantly patriarchal society, feminists have redefined the meaning of work to include housework and childcare (Lister, 1997). But this re-conceptualisation must go much further for disabled people because although many disabled individuals, both female and male, do housework, and have childcare, and/or ‘caring’ responsibilities others do not. Consequently this re-configuring of work must include the everyday tasks that nondisabled people take for granted. Notably this idea is not unprecedented within sociology. Corbin and Strauss (1988), for instance, identified three types of work associated with ‘illness’ management: a/ ‘illness work’ including activities like organising and administering medication, doing physiotherapy etc.; b/ ‘everyday work’ such as household tasks and interactions with family and professionals; and c/ ‘biographical work’. The latter involves strategies that disabled people adopt in order to incorporate impairment into their daily lives. This might involve developing ways of making sense of their condition and explaining it to others. The growing involvement of disabled people in the development and delivery of disability services should also be construed as work. This is especially evident with reference to the various self operated support systems now being introduced by many governments. As an alternative to professionally led services these schemes provide funding to disabled individuals to recruit and employ support workers or personal assistants (PAs) to do the things they are unable to do themselves. Although technically unemployed users of such schemes are in fact employers who may employ four or five people per week. The knowledge and skills required to manage these schemes is comparable to running a ‘small business’ (Prideaux et al., 2009). They also make a significant contribution to local and national economies. For instance, Sweden introduced funding for PA users in 1994. There are now some 14,000 people using these schemes employing 70,000 PAs (Ratzka, 2007). The recent expansion of user led involvement in the development and delivery of services has meant that more and more people with various impairments now spend their 'free' time actively involved in service consultations and development of one form or another. Notwithstanding that successive British governments since the 1980s have actively encouraged this involvement, but none have acknowledged such activity as work (Barnes, 2003). Such policies warrant a re-evaluation of debates about the costs of state sponsored welfare systems. Escalating welfare costs are due to a variety of factors: demographic, economic, political and cultural; not least of which is consistent governmental failure in all countries to address the various barriers to inclusion. But whilst barrier removal will undoubtedly reduce the cost of state sponsored welfare, it can never eliminate it altogether. This is simply because impairment however it is defined is a common human experience. As indicated above the overwhelming majority of impairments are acquired during the life course due to various factors: poverty, pollution, accident, violence, war, lifestyle and ageing (WHO, 2001a; 12 Priestley, 2003). Hence rather than being viewed as a drain on national economies, welfare systems in whatever form they take should be viewed as an indicator of collective social responsibility and social justice.. Moreover, there is growing realization amongst academics and policy makers that the continued development and future stability of a global economy is inextricably linked to the complex and ever changing relations between production and consumption (Bauman, 1998). This should be coupled with the recognition that, regardless of their role within the orthodox work environment, disabled people are both producers and consumers of a vast array of services upon which many nondisabled people depend; they are, therefore, a fundamental component within this equation. Consequently instead of stigmatising those in receipt of welfare services and support, politicians and policy makers should be striving to develop a more even handed and less stigmatising system of provision and support. In an increasingly unstable world such a policy is an essential element in the struggle for poverty reduction and development of a more equitable and just global society.

The term master narrative, or grand narrative, was first introduced by French philosopher Jean-Francois Lyotard (1984). Such narratives are hallmarks of “the enlightenment and Western philosophical tradition” (Giroux, 1993, p. 463) that act to universalize and cast dialogues in binary, contrasting categories that support the maintenance of dominant groups. A master narrative is a script that specifies and controls how some social processes are carried out. Furthermore, there is a master narrative operating in academia that often defines and limits what is valued as scholarship and who is entitled to create scholarship. This is problematic, because the dominant group in academia writes most research and, more often than not, they are White men. Members of marginalized groups, such as women and people of color, have had little or no input into the shaping of this master narrative. Therefore, research on marginalized groups by members of marginalized groups that reveals experiences that counter master narratives is often compared against the White norm (Fine, Weis, Powell, & Wong, 1997). Perspectives that run opposite or counter to the presumed order and control are counter narratives. These narratives, which do not agree with and are critical of the master narrative, often arise out of individual or group experiences that do not fit the master narratives. Counter narratives act to deconstruct the master narratives, and they offer alternatives to the dominant discourse in educational research. They provide, for example, multiple and conflicting models of understanding social and cultural identities. They also challenge the dominant White and often predominantly male culture that is held to be normative and authoritative. Such counter narratives in higher education by women faculty members and faculty members of color might suggest that differences exist for them in their academic experiences that are distinct from those of majority White faculty members (Erler & Kowaleski, 2003). For example, these targeted groups often give voice to counter experiences related to individual, institutional, and societal oppression that shape their behaviors in a given situation (Fine, Ayala, & Perkins, 2000; Romero & Stewart, 1999). These alternative lenses of analyses and interpretations of experiences frequently question and criticize master narratives.

In recent years, there has been a move towards the application of a social constructionist framework to disability (Borden, 1992; Brzuzy, 1997; Ringma & Brown, 1991). Witkin (1990) described constructionism as a theory that seeks to “elucidate the sociohistorical context and ongoing social dynamic of descriptions, explanations, and accountings of reality” (p. 38). Rather than taking theory and the dominant forms of understanding as definite conclusions, implicit in social constructionism is the idea that knowledge is not an objective entity, but rather a social creation (Levine, 1997). Constructionism devotes particular attention to the ways in which knowledge is historically situated and embedded in cultural values and assumptions, sociocultural norms, and language (Patterson, 1997). From the constructionist perspective, language serves as a method for producing meaning and generating knowledge rather than a representation of an objective “truth”. Constructionism as an epistemology, therefore, contributes a liberating quality to the social sciences by way of alteration to the monolithic landscape of positivism and scientific inquiry (Witkin, 1990). Social constructionism can offer significant insight to contemporary conceptualizations of disability. Most individualistic (personal-tragedy) accounts of disability fail to recognize that even the most objective of disorders, such as visual impairment, do not exist independent of culture and society. The contemporary language of disability, with its individualistic representations of personal tragedy suggests that disability and impairment exist independent of cultural, historical, or other contexts (Brzuzy, 1997). While the emphasis on the influence of society and culture on human behavior (ex. anthropology, cultural criticism, sociology), social workers and other human service professionals seem to unquestioningly believe the objective “truth” of disability and impairment, thereby neglecting environmental factors (Raske, 2005). The constructionist perspective asserts that a disability-related impairment comes from the relationship of the person with a disability to the socio-cultural environment; thereby the environment is seen as the primary target of intervention. This framework stands in sharp contrast to the position taken by social work education regarding disability, where the emphasis is on rehabilitation, adaptation, and mitigation (Gilson & DePoy, 2002). Drawing from cultural studies, the cultural construction of disability questions the enlightenment idea of a rational, progressive human actor in society. It scrutinizes extant knowledge to deconstruct the unstated assumptions about disability and people with disabilities. The subjective experience of disability and both the explicit and implicit assumptions that shape the disabled experience have been suggested by a large number of ethnographic studies undertaken by anthropologists (e.g. Groce & Scheer, 1990; Ingstad & Reynolds-Whyte, 1995; McDermott & Varenne, 1996). Social work in an increasingly multicultural North America poses the question of how disability is understood in different cultures. How are deficits of the body and mind interpreted and dealt with in different societies? How is an individual’s identity as a person affected by the cultural connotations of disability? How do processes of cultural transitions shape the local understanding of disability? Definitions of disability in terms of measurable functional limitations fail to recognize that culture permeates the variations of the human condition with consequences much deeper than the simple ability to perform a given task (Ingstad & Reynolds-Whyte, 1995). Objective criteria of functional limitations do not answer the question of how important is individual ability as a source of social identity in different cultures. The experience of disability, too, varies across cultures. For example, Edgerton (1985) showed attitudes toward people with impairments varied greatly in non-Western cultures, from negative discrimination, to acceptance, and to positive attribution of supernatural powers. Locust (1985) explores the differences in Native American beliefs about “unwellness” across cultures such as the Hopi, Apache, Yagui, and Navajo. One telling case example is that of Piki Maker, an expert bread maker whose physical differences in back structure and arm length are promoted by her community as assets that allow her to produce bread at a more efficient rate than anyone else in the tribe. Disability is, therefore, hardly a unitary concept: in many cultures one cannot be “disabled” because “disability” as a distinct category does not exist. The term “disabled” does not translate into many languages, although there are terms for people with visual, hearing and cognitive impairments (Ingstad & Reynolds-Whyte, 1995). The lack of a universal definition of disability throughout history indicates a tenuous relationship between the disabled individual and society. Understanding disability as a socially and culturally constructed phenomenon, rather than as an inherent objective “reality” calls into question the presuppositions of the medical model that form the foundation of social work practice with people with disabilities. Most of the theoretical leanings that under gird social work assumptions and practice with disabled populations at the levels of treatment, counseling, rehabilitation, service provision, case management, research, and policy analysis have been borrowed from medicine and psychiatry; as such they often lack conformity between social work code of ethics and an agenda of human rights/social justice (Brzuzy, 1997). In this regard, constructionism provides a theoretical framework to rethink disability in liberating and empowering terms.

(James L. – professor of Communication Studies w/PhD from Indiana University, “The Rhetoric of Ableism,” Disability Studies Quarterly 31.1, https://dsq-sds.org/article/view/1665/1606/)

Recognizing ableism requires a shift in orientation, a perceptual gestalt framed by the filter of the term "ableism" itself. The same texts that broadcast "Ableism!" to those oriented to perceive it are usually read innocently even when viewed from a liberal, humanitarian, or progressive perspective. Ableism is so pervasive that it is difficult to identify until one begins to interrogate the governing assumptions of well-intentioned society. Within the space allowed by these rhetorical premises, ableism appears natural, necessary, and ultimately moral discrimination required for the normal functioning of civilization. Consider a set of stairs. An ableist culture thinks little of stairs, or even sees them as elegant architectural devices—especially those grand marble masterpieces that elevate buildings of state. But disability rights activists see stairs as a discriminatory apparatus—a "no crips allowed" sign that only those aware of ableism can read—that makes their inevitable presence around government buildings a not-so-subtle statement about who belongs in our most important public spaces. But the device has become so accepted in our culture that the idea of stairs as oppressive technology will strike many as ludicrous. Several years ago when I began to study ableism, a professor—unconvinced of the value of the project—questioned my developing arguments by pointing to a set of steps and exclaiming, "Next you'll be telling me that those stairs discriminate!" He was right. The professor's surprise suggests that commonplace cultural assumptions support themselves because the very arguments available against them seem unwarranted and invalid. Interrogating stairs was such an outrageous idea that a simple reductio ad absurdum argument depicted the critique of ableism as a fallacy. As an ingrained part of the interpretive frameworks sanctioned by culture, ableism gets reinforced by the everyday practice of interpreting and making sense of the world. Using this idea of what ableism does at the intersection of rhetoric and ideology, I next develop a way of understanding how it operates. I argue that this way of conceiving ableist thinking as rhetorical practice identifies potential approaches for challenging ableism. Rhetorical Norms of Ableist Culture I work to expose and critique the rhetorical structure that argument theory labels the "warrant." Stephen Toulmin defined the warrant as the "self-authorizing statement" connecting the "grounds" of an argument (also called "data") to the "claim."12 He defined claims as "assertions put forward publicly for general acceptance" and grounds as "statements specifying particular facts about a situation … facts, observations, statistical data, previous conclusions, or other specific information [used] as immediate support for [a] claim."13 Thus, warrants are the reasoning that—as "the previously agreed general ways of arguing applied in the particular case"—are relied upon "as ones whose trustworthiness is well established."14 I use the term "rhetorical norms" to describe warrants that become commonplace assumptions that govern interpretation and promote an ideological orientation throughout a culture. In Toulmin's formulation, most warrants are "field-dependent," meaning that they appear and work primarily within a specialized discipline or area such as mathematics, sport, or law.15 What I call rhetorical norms transcend field boundaries to become generally available for interpretation across a culture; they become "common sense," or reasoning that one need not justify or defend because it works and appears in so many places that to question its legitimacy in one area would require reconsidering its use in all the others.16 Common to the culture as a whole, rhetorical norms appear arhetorical; not requiring defense by argument they make reasonable the discriminatory action that would otherwise appear to violate other cultural norms of justice or equity. Two rhetorical norms of ableist culture I have discussed elsewhere; I briefly explore a third in this article to demonstrate how these rhetorical norms sustain ableist rhetoric and discrimination. One warrant that informs ableist rhetoric is seeing deviance as a sign of evil. Western art and literature have long relied on the convention of displaying physical abnormalities to reveal the presence of evil that would otherwise be invisible. As Paul Longmore notes, "Disability has often been used as a melodramatic device … Among the most persistent is the association of disability with malevolence. Deformity of body symbolizes deformity of soul. Physical handicaps are made the emblems of evil."17 At the foundation of this visual rhetoric is a long-standing religious perspective that reads physical imperfection as evidence of moral imperfection. Ruth Mellinkoff catalogues extensively the appearance of various deviant physiques and disabilities in Northern European art of the late middle ages. She argues that "Disease, deformity, and physical features different from those of the majority were linked with evil and sin, and so it is not surprising to find these alleged imperfections attached in artistic representations to historical, legendary, and contemporary figures who were viewed as ignoble or evil."18 Mellinkoff maintains that this artistic tradition was not particular to the period on which she focuses, tracing "an amazingly consistent pattern of thought [that] has persisted in Western society, from at least as early as ancient Greece into our own time."19 Using physical deviance to render evil visible saturates the Western artistic tradition, and it plays a crucial role in such genres as horror stories and films about demonic possession. Indeed, in these narratives the rhetorical norm is essential, for viewers and readers who fail to interpret the deviant/disabled body as possessed will not understand the plot at all. In the possession narrative—from Cotton Mather's 1689 treatise Memorable Providences, Relating to Witchcrafts and Possessions to Peter Blatty's contemporary 1973 touchstone The Exorcist—the audience must learn to see or read the possessed body's physical difference as proof of a spiritual Other's presence.20 Unlike many texts that simply display ableist associations between disability and criminality, monstrosity, or immorality, the possession narrative requires the audience to adopt the ableist perspective that "deviance is evil" in order to comprehend the story. The possession narrative literally puts a face on evil, and it teaches us to recognize that face by its extreme deviance from the "norm." Similarly, ableist rhetoric often dictates realizing ability as arising directly and simply from the physical body, employing a warrant that specifies "body is able." The social systems of sport provide an excellent example, for these activities privilege particular skills or physical capacities by rewarding their presence or performance within the structure of a game. Without the sport of golf, having the capacity to club a small white ball extremely accurately over long distances would be meaningless; only in the context of the game does this become an ability that elevates the victorious winner to obtain rewards of fame and wealth. The rules of such games create spaces where particular performances appear salient, which shape expectations of bodily capacity, and which identify as "disabled" or "incapacitated" those whose bodies do not or cannot participate. As I argue elsewhere, this rhetoric played a central role in the 1998-2001 controversy over whether professional golfer Casey Martin should be allowed to use a cart during play in Professional Golf Association (PGA) events as an accommodation for his disability.21 Arguments opposing Martin's case frequently depended on the rhetorical norm "body is able" by locating his ability entirely in his body; sport's presumed celebration of natural physical prowess obscures the ways rules always already privilege some physical capacities over others. Presuming that the rules created a "level playing field" to which everyone had equal access, advocates for the PGA argued that "fair play" required that nobody be given the unfair advantage of using a device that others were not allowed to employ. Although the decision to grant his accommodation was ultimately upheld by the Supreme Court, the widespread opposition to Martin's case showed the depth of this norm's pervasiveness. As this case demonstrates, the ableist equation of ability and body protects ableist institutions and architecture from scrutiny, locating as simple knowledge the clearly questionable assumption that one's abilities inhere in one's physical corpus. As the capacities privileged, rewarded, and normalized by cultural systems that depend on their presence and performance, "abilities" are thoroughly social constructs communicated rhetorically. Knowing them as such reverses the ableist episteme that "body is able," opening to critique potentially any claim that some skill should be favored over others. In this article I analyze "normal is natural," a third rhetorical norm that obscures as "natural law" the ideological preference for things "normal." Like "deviance is evil" and "body is able" this warrant justifies ableist discrimination by providing rationale for subordinating disabled people. It works by deploying the idea of the normal body as a fact of nature, thereby absolving responsibility for employing it in medical, scientific, political, and religious institutions. According to this norm, valuing normal bodies and devaluing "abnormal" bodies reflects sensible awareness of the way things naturally work instead of employing questionable ideology. Presumably dispassionate and objective science that merely describes natural law presents the idea of the normal body as "objective truth." Normality thus becomes an inherent and relatively unquestionable characteristic, appearing against a framework grounded in scientific certainty. Historically, society often declaims discriminatory assumptions as scientific fact. As Robert Garland observes: "Modern science has often served merely to reinforce our cultural presuppositions."22 Scientific or medical evidence can redefine what counts as normal because generally the culture considers these approaches (at least when conducted "objectively") to merely report "facts." In contrast, social criticism and commentary (particularly when conducted "subjectively") struggle for legitimacy. This tends to bury and protect the roots of ableist discrimination. As Abby Wilkerson argues, this division between the natural and the social works "to obscure the social origin of practices that differentially harm members of oppressed groups, while making these harms appear to be 'facts of nature.'"23 Aristotle's Generation of Animals: Naturalizing the Normal Arguments relying on the logic that "normal is natural" appear throughout history, and one field that has relied extensively on this ableist assumption is the science of "teratology," also known as the study of "monsters." The prominence of the norm can be traced throughout the development of this science back to ancient Greece, where it played a central role in its founding text. Aristotle established the basis for the modern aetiology of congenital deformity in his Generation of Animals (GA).24 Although other scholars addressed the subject, Aristotle's book inspired several influential physiologists including Galen of Pergamon, Hieronymus Fabricus ab Aquapendente, William Harvey, and Étienne Geoffroy Saint-Hilaire, who coined the term teratology in 1822.25 Aristotle's reliance on the norm "normal is natural" thus informed the primary body of research on the topic for over 2000 years. Moreover, "normal is natural" works as a basic tenet in Aristotle's explanations for all biological phenomena. GA occupies a significant space among his works, as it "integrated as it is nowhere else" Aristotle's thoughts on origins, form, and natural law.26 Specifically, in GA Aristotle couples his observations on procreation with his typology of four causes, well known as the foundation of his epistemology, to explain why life takes its variety of forms.27 By studying the reproductive system, he sought to account for the diversity of nature itself. As Garland puts it, "Aristotle's insistence that 'monsters' are a necessary part of Nature is not so much evidence of exceptional enlightenment on his part, but rather the consequence of his need to defend the epistemological foundations of his biological system."28 The book was the first to defend systematically an "anthropocentric view of deformity" as scientific observations of biological fact."29 Like many of his contemporaries, Aristotle viewed the world of animals as a hierarchy with the human male at the apex.30 In other words, the human male stood as the standard of physical perfection "in comparison with which all other animal life is at best deviant, at worst monstrous."31 This aspect of the text plays a significant role in my analysis, both because it illuminates how distorted "scientific objectivity" can be, and because it suggests the attitude inherent in the rhetorical norm of interpreting what is understood as normal as natural. Because Aristotle often explicitly stated his reasoning, it is not difficult to locate the places where the text encourages the reader to operate with the assumption that "normal is natural." In the first book of the GA he declares, "It is what occurs generally that is most in accord with the course of Nature."32 The idea appears more explicitly in book four, where he uses it as the foundation for his discussion of monsters, stating, "(A)nyone who does not take after his parents is really in a way a monstrosity, since in these cases Nature has in a way strayed from the generic type."33 He makes it clear that by this he does not mean the monstrosity is a completely unnatural being, because nothing that exists "is contrary to Nature in her entirety," but rather that it belongs to the class of things "contrary … to Nature in the generality of cases."34 Whenever "some violence is done contrary to what is normal … that ipso facto means something contrary to Nature, because in the case of things which admit and do not exclude the possibility of being other than they are, 'normal' and 'natural' are identical."35 At the end of the book, Aristotle even suggests the origins of this idea, arguing that Nature testifies to the importance of regularity and normality in the repeated patterns of the sun and moon. And, as the moon dictates the rising and falling tides, all life must follow the same regular pattern of generation and decay. Whatever the reasons for the stable revolution of the heavenly bodies, "Nature's aim" is to bring all things into similar patterns, "to measure the generations and endings of things by the measures of the bodies … ." But Nature ultimately fails to accomplish this task, foiled by "the indeterminateness of matter and the existence of a plurality of principles which impede the natural processes of generation and dissolution and so often are the causes of things occurring contrary to Nature."36 In these final claims, Aristotle raises his equation of the normal and natural to the status of the natural laws governing the bodies of the universe. The repeated presence of this norm as warrant in Aristotle's argument is necessary to maintain his general orientation as a natural scientist bent on revealing the laws that govern nature. Because the monster violates the rules that Aristotle argues govern reproduction, it must be explained. If his analysis reveals the ways nature works, then that which does not follow those principles must be deemed relatively unnatural. In other words, the claim that "normal is natural" maintains the consistency and cogency of his explanation of the reproductive system. Without the rhetorical norm, his systemic explanation would be imperfect. Instead of revealing the laws of nature, all his copious examples would simply suggest the way things worked "most of the time." According to Aristotelian logic, a theory of how something should work must account for those cases where it does not. By defining those exceptions to the rules he establishes as aberrations contrary to nature, Aristotle protects the general epistemological claims of his explanation of how animals are generated; the exception makes the rule. By rendering the normal as the intended aim of nature, he places it on an elevated foundation that does not require defending or elaboration and that escapes critique. He raises it to the status of a rhetoric that denies its own rhetoricity, positioning it as that which goes without saying. Constructing the abnormal body as unnatural ultimately attached very negative connotations to disability. Monsters were considered "sub-human," imperfect beings not deserving of the rights of other citizens, and Aristotle argued in the Politics there should be a law "to prevent the rearing of deformed children."37 When interpreted later through the Christian worldview that dominated Europe in the middle ages, developing beliefs about teratology coupled biological explanations for congenital deformity with religious beliefs. Generally, in these times the occasion of monstrous births was linked with sin and unholy activities. As Ottavia Niccoli has explained, the fourteenth through sixteenth centuries were marked by a widespread belief and well published theory that linked abnormal births with conception during a woman's menstrual period. Because such intercourse was deemed sinful and unclean (an interpretation of Leviticus 16 and the apocryphal Ezra 4), such births were deemed punishment for irresponsible sexual activity. Even works by physicians like Lievin Lemnes and Ambrose Paré contained this view, and the scientific aura surrounding their work helped validate the idea. In this period, infants and people described as monstrous were treated as Satan's offspring, and it was standard practice for midwives to terminate the life of "monstrosities" at birth.38 This practice makes very clear the ableist implications of the rhetorical warrant "normal is natural." Conclusion: A Case for Strategic Neologism Identifying ableism requires rhetorical invention, for to critique a rhetoric that goes without saying requires new words. Neologism, strategically used, can help uncover the unexamined assumptions of a way of seeing the world. Burke explains: We learn to single out certain relationships in accordance with the particular linguistic texture into which we are born, though we may privately manipulate this linguistic texture to formulate still other relationships. When we do so, we invent new terms, or apply our old vocabulary in new ways, attempting to socialize our position by so manipulating the linguistic equipment of our group that our particular additions or alterations can be shown to fit into the old texture.39 Similar work has been done to establish the concept of "sexism." Until the word came into being and use, what it described operated in the open as acceptable patterns of thought. Oppressed women certainly might find such thinking objectionable, but without the word their critique lacks a specific target. In such a situation they may target another related concept, such as the institutions generated and protected by the attitude, as a way of expressing their dissatisfaction with the hegemonic oppressive orientation. The target may be chosen because it is closely linked with the attitude, because it is deemed a particularly heinous practice, or because it lies close to the border of acceptable behavior and is thus easily accessible. Once chosen, the target becomes the receptacle for dissatisfaction with the unnamed orientation, and efforts to remove the practice become closely aligned with repudiating the offensive perspective. Because attacking the target requires forging coalitions with those who may oppose the target for other reasons, this strategically important move can actually help protect the underlying oppressive orientation from discovery, and eliminating the target can be confused with eliminating the oppressive view. Continued dissatisfaction with the still unnamed premises of the oppressive system can lead to the acquisition of new targets, and the cycle begins anew. Yet naming and calling into question the view itself raises the possibility of altering the very strands out of which the oppressive institutions are spun. Identifying the view as problematic adds a critical dimension to the struggle by denying the simplistic perspective that sees altering a few target structures as a solution to the problem. Naming the view exposes its pervasiveness, assumptions, and implications to criticism. The struggle against sexism generally fits this pattern. Dissatisfaction with gender inequality has led to the removal of a number of oppressive measures but has yet to eliminate the ideological practice now named sexism. Early targets included the right to vote and property rights allowed to women, yet even once these institutional targets were eradicated, women still faced an oppressive attitude. The feminist movement made a critical step when it identified the lack of words that could identify the oppression of women. Betty Friedan addressed this issue specifically in 1963, and aptly described "The Problem that Has No Name."40 While Friedan's name for the problem ("feminine mystique") does not survive in contemporary nomenclature, she identified the impetus for naming the problem "sexism," a term that appeared a few years after her groundbreaking book.41 Giving the name sexism to the regime of gender oppressive behaviors, and exploring its extensive saturation of our paternalistic culture, has motivated and shaped feminist thought, critique, and action ever since. Grounded in the name, awareness of sexism can continue to evolve as social critics and activists expand our society's understanding of what the terms mean and how it continues to influence our culture. When we first encounter the name "ableism," we understand it by analogy to words like sexism, by our knowledge of its apparent roots ("able" and "ism"), and by the rules for combining roots into words. A possible referent at this stage is hate crime against, abusive or mocking behavior toward, or Nazi Germany's genocide of people with disabilities. Targeted here, many find ableism easy to reject and use the term to describe a distasteful way of acting. Ableism becomes problematic when individuals come across a case where their own seemingly benign opinions might be labeled "ableist." Using the label to identify an act or an opinion that fits within one's own orientation requires individuals to reconcile their own sense of self worth and their judgment of the issue in question. This neologist method of critiquing an antirhetorical rhetoric has certain advantages over other alternatives. In this approach empathy and understanding become tools in the struggle against ableism, for recognizing in oneself motives behind actions previously ascribed solely to the Other generates far more pressure to examine and explain those motives than when they can be quickly dismissed as somebody else's problem. We can think of the Other as a two-dimensional being, driven by indiscernible, illogical, and unrealistic ideas, but we resist thinking about ourselves in this way. Finding similarities between our thoughts and those we ascribe to Others not only allows us a measure of empathy and understanding, it expands our awareness of our own unexamined biases. Furthermore, this method maintains a process perspective of language and its relationship to thought. It is not necessary to have a complete understanding of ableism before beginning to recognize it, for that understanding can grow and evolve. Finally, this explanation puts the emphasis on one's perspective, orientation, or worldview. Naming ableism in these terms allows us to recognize it as a rhetorical construct, sustained by articulation and iteration, and open to transformation by these same techniques. This perspective can also suggest ways to align the struggle against ableism with the emancipatory projects of other oppressed populations. Focusing on specific rhetorical norms one can observe their use as warrants for other cultural prejudices, which reveals ways that questioning their validity and authority can challenge other discriminatory orientations as well as ableism. In contemporary society the norm "deviance is evil" is often applied to claims about fatness, where a cultural obsession with obesity declares it the greatest physical malady facing the current generation. Similarly, "body is able" appears in ageist discrimination against the elderly, and the natural process of living across time is equated with the social process of aging in which conventional devices regularly used as part of everyday life cease to work for a person with changing physical capabilities. The ability to use the phone or stairs depends on the social norms that make these devices acceptable and useful at least as much as it depends on physical capacity. Finally, the warrant "normal is natural" has played an overt and vocal role in discrimination against gay, lesbian, bisexual, transgender, and queer populations as heterosexual activity is described as normal and therefore the only natural form of sex. In each case, activists and scholars confronting ableism can find support, complementary theories, and political alliances with these groups, particularly as they struggle against a common rhetorical foe. Finally, focusing on ableism as rhetoric makes rhetorical responses more attractive. Political rhetoric seems much less empty when one understands that the problems confronted are also rhetorical in nature. The problem is not that deviance is bad, it is that ableism teaches seeing it that way. The problem is not that being abnormal is unnatural, it is that ableism teaches valuing normalcy that way. The problem is not that ability resides in the body, and that a body with different skills is inherently unable to function in society, it is that ableism teaches knowing ability that way. Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means. If we locate the problem in disability, then the ableist absolves his or her responsibility for discrimination and may not even recognize its presence. If we locate the problem in ableism, then the ableist must question her or his orientation. The critic's task is to make ableism so apparent and irredeemable that one cannot practice it without incurring social castigation. This requires substantial vigilance, for ableist thinking pervades the culture. For example, as I write this, I am tempted to use medical metaphors to explain the task and script something like "we cannot simply excise the tumor of ableism and heal the culture, for it has metastasized and infiltrated every organ of society." Yet this metaphor relies on an ableist perspective that motivates with the fear of death and turns to medical solutions to repair a body in decay. Using it, I would endorse and perpetuate ableist rhetoric, just as I would by using deafness as a metaphor for obstinacy ("Marie was deaf to their pleas for bread") or blindness to convey ignorance ("George turned a blind eye to global warming"). The pervasiveness of these and similar metaphors, like the cultural ubiquity of using images of disabled bodies to inspire pity, suggest the scale of the work ahead, and the ease with which one can resort to using them warns of the need for critical evaluation of one's own rhetoric. Yet the task can be accomplished. Just as feminists have changed Western culture by naming and promoting recognition of sexism, the glass ceiling, and patriarchy—admittedly a work in progress, yet also one that can celebrate remarkable achievements—we can reform ableist culture by using rhetoric to craft awareness and political action.

(Jennifer Van Aswegen – Doctorate of Education from University of Sheffield and Michael Shevlin – Professor of Education @ Trinity College Dublin, “Disabling discourses and ableist assumptions: Reimagining social justice through education for disabled people through a critical discourse analysis approach,” Policy Futures in Education 17.5, https://journals.sagepub.com/doi/full/10.1177/1478210318817420#bibr27-1478210318817420)

Although studies have shown that there are benefits associated to varying degrees with approaches focused on the supply side of the labour market (), a simplistic social capital enhancement and a supply-side focus does not of itself reduce employment barriers for people with disabilities (). As : 355) points out ‘the provision of skills training may well improve a person’s functioning as an economic actor, but it will not of itself enhance his/her capacity to choose how he/she lives or to achieve happiness’. In fact, supply-side interventions are reproved as the ‘very opposite of what is needed’ for disabled people, serving to ‘reinforce, rather than undermine, the traditional assumption that disabled workers are somehow not equal to non-disabled peers’ (: 4). The very fact that this policy is a standalone specialist policy for disabled people situated alongside its able-bodied counterparts Action Plan for Jobs() and Pathways to Work() is evidence of the twin track approach to mainstreaming, where disabled people are seen as requiring a specialised strategy that is built on a charitable model of the ‘deserving poor’. Policies from this framework of thinking focus on ensuring that citizens do not become a burden on the welfare system by enhancing their productive potential and their labour market readiness – in other words, their human capital potential. Underpinning this perspective is the wider ideological commitment to the marketisation of education – a managerialist perspective that is preoccupied with maximising economic output and individual self-sufficiency, rather than enhancing human capabilities. : 295–296) himself has been critical of the misappropriation with and conflation of human capital to the concept of human capabilities. The use of the concept of ‘human capital’, which concentrates on only one part of the picture (an important part), relayed to broadening the account of ‘productive resources’, is certainly an enriching move. But it does need supplementation. This is because human beings are not merely means of production, but also the end of the exercise. Similarly, Dean et al. argue, ‘skills and knowledge that may be exploited in the labour market are not the same things as human capabilities’ (2005: 9). Valued knowledge Embedded within the human capital paradigm is a new code of values underlying what constitutes valuable knowledge – and from this perspective, market knowledge trumps all other forms. The lack of critical sociological and philosophical research in Ireland, as noted by Lynch, has resulted in impoverished discourses that are scientifically misinformed and frequently inaccurate, and a policy arena where ‘disciplines and fields of study that are not marketable have lower status and power’ (2014: 9). From a capability perspective, an education that enables people to achieve well-being as well as the exercise of agency, entails the promotion of functionings and capabilities relating to abilities and knowledge that enable them to participate in dominant social frameworks (). Education should not be construed merely as the provider of technical skills, but equally as the empowerment of the person through critical thinking and imagination (). However, the Irish State’s directive is evident: increase the skills base in strategic growth areas in order to create and attract more business and investment; in other words, ‘teach what can be sold’ (). An alternative discourse Ivan Illich once famously stated ‘If you want to change a society, then you have to tell an alternative story’ (cited in : 2). In seeking an alternative to neoliberal human capital discourse, a capabilities approach provides a framework for new ways of thinking alongside ‘an underpinning ideological narrative from which policy development can flow’ (: 352). A capabilities approach has the potential to emphasise the ethical aspects of inclusion because it embraces an understanding of difference as a specific variable of human diversity; equally, it understands human dignity as the development of capabilities. From this perspective, there is no tolerance for disabling/ableist discourses or the unequal treatment of individuals. makes this clear, stressing that a capabilities approach must be concerned with the impact of deeply embedded social injustice and inequality, because it is these features that generate capability failures through discrimination or exclusion. Instead of emphasising the specifics of the disabling situation, a capabilities approach shifts the focus to look at establishing equality in terms of possibilities and choices (). A capabilities perspective emphasises that people not only require access to resources and opportunities, but also need to be able to convert these into valuable and valued achievements and goals (). Policies that improve the lot of groups are to be rejected, : 16) argues, unless they deliver the central capabilities to each individual. A capabilities approach puts the onus on government and public policy to overcome structural obstacles in ensuring that all individuals in a society can achieve their capabilities. Concluding comments Although welcomed on the surface by the disabled people’s movement, CES raises serious questions about the framework of thinking that guides the development of inclusive policies and practices for disabled people in Ireland (). The prioritisation of economic imperatives has greatly impacted on rights of disabled people to exercise agency in relation to their available choices to achieve the forms of inclusion that are highlighted within materialist social models of disability (). As Nussbaum argues ‘we need a counter-theory to challenge these entrenched but misguided theories, if we want to move policy choice in the right direction’ (2011: xi–xii). In response, this study highlights the real potential of a capabilities approach for overcoming the deficient discourses and disablist assumptions in CES in favour of a policy framework that seeks to reconcile personal fulfilment, social inclusion and economic independence for disabled people.

The one societal need in our society that is often unacknowledged, silenced, and left unexamined is that humans have, as Michalko quoted Cornel West, the “deep, visceral need to belong” (Michalko, 2002, p. 81) — all of us struggle with full acceptance of ourselves and our desire to be seen as acceptable or welcome in a society that loves to label people. The media creates walls between its ideals and the people it views as Others, such as when the media views people with autism as “abnormal mysteries”. We are being taught that differences occurring from autism are wrong, and sadly too many families depicted in the media perpetuate this negative view of their own children. When thinking of “normal” henceforth, let‘s consider what Michalko wrote about society and his blindness. He explained that, although society might have found ways technologically for him to participate (he is a professor), he is still seen as “strange” because he is blind. He said the difference in his blindness must be grappled with inside his being in “a space between nature and culture” and “normal and abnormal” (2002, p. 83), and it is within this confusing, unmarked space where he has had to build his own identity. By moving through the world with his “body of blindness,” Michalko has projected himself into the “social space,” just as my son must project his own self, by moving through the social space with his ‘mind of difference‘; thus, society reacts to people who have disabilities who cannot live up to the mythical norms with “help,” “pity,” “ridicule,” “unease,” and “curiosity” (2002, p. 88), and it results in an unequal power structure that creates treacherous terrain for all of us who have been Othered. Michalko (2002) noted that mainstream Western society views all disabilities as abnormal, and it thus approaches people with disability as tragic people who live lives “not worth living”; they are seen as the Other, as objects of pity, both “vulnerable and fragile” (p.68). The complexity, diversity, and range of differences of all human beings in this world are erased, denied, and ignored under a banner of ‘sameness’ or ‘normalcy’ and those who cannot or will not conform are silenced and lumped into the category of Other, and dealt with suspicion for not conforming to social construction of what is acceptable in appearance, behavior, and experience. Eugenics, the academic Phil Smith (2008) has concluded, is still very much present in societal attitudes toward disability. Eugenics formalized “the Normal, a cultural landscape outlined in order to support the hegemony of its inhabitants, a liberalist bourgeois class of white, able-bodied men” (P. Smith, p. 419). By silencing those with perceived disabilities (or those with a particular perceived race, ethnicity, gender, or sexual orientation, etc.) and deeming them as lesser than ‘normal‘ humans—society is able to continue to deny that ‘being normal‘ is actually a socially constructed myth (Michalko, 2002, p. 69). Phil Smith further pointed out that not so long ago those who committed the war crimes by killing or sterilizing people they had deemed of inferior intelligence in the Nazis T-4 project were consistently given less severe convictions and higher acquittal rates (P. Smith, 2008, p. 421)—revealing, indeed, that as a society we devalue the lost lives of those considered too different from the mythical norm, which we will demonstrate later is a devaluation of human life very much alive in media depiction of autism. Society rarely has ears for the voices or rooms reserved for those with differences who think otherwise, and it rarely realizes that indeed people with differences also have value and critical roles to play in society. The media maintains this gaping silence as well. Society, Michalko has argued, either expects those deemed “abnormal” will “get through” their differences by adapting to the dominant rules, so as to be less noticed, or it expects them to “get out” by removing themselves from view, by being silent and isolated (Michalko, 2002, p. 75); and some experts, doctors, educators, and therapists make a sizable income from attempting to enforce these societal expectations on families.

We seek theory that connects with the lifeworld of these young people. More generally, we will explore how the theoretical lexicons of affect and disability can be plundered in order to help us understand disability in the world. 4. Feeling disability Disability can and should be an entry point into studies of affect. We might want to think about the ways in which affect economies draw disabled people and those close to them into particular ways of feeling and emoting. Like Ahmed (2004) and Pedwell and Whitehead (2012) we are wary of those affect theorists who claim that their work constitutes a brand-new field on inquiry in relation to emotion and feeling. Just as feminism can claim a long historical alignment with affect through ‘the personal is political’, so critical disability studies can also point to a body of literature that has been engaged with the affective experiences of disability (Goodley 2016). Critical disability studies is a nascent field of scholarship and activism that explicitly engages with transformative fields of inquiry including queer, postcolonial, indigenous and feminist studies. Theories of affect sit at the intersections of these different spaces of theorisation. In the following, we make some novel connections of theoretical orientations and trajectories from affect theory and critical disability studies. 4.1. Ontological invalidation in neoliberal-able times How come you are in a wheelchair? What happened to you then? I never think of you as disabled? DISABILITY & SOCIETY 207 You are so brave, you know. (Common comments and questions made by non-disabled people to disabled people; see Goodley 2016). It must be so difficult for you, having a disabled child, but it’s a good job it happened to you, I don’t think I could cope. (Personal comment made to one of the authors, no date) A lot of people [friends] will ask, ‘Does Shaun’s willy work?’ (Hannah, non-disabled wife of Shaun, a man with Spinal Cord Injury [SCI]; see Liddiard 2017) The British feminist disability scholars Thomas (1999, 2001, 2002, 2007) and Reeve (2002, 2004, 2005, 2006, 2007, 2008) have created a theoretical space for thinking creatively about the psyche. As Goodley (2016) argues, both are sceptical about psychologisation but share an interest in what Reeve describes as the ‘barriers in here’ that are often ignored by radical structuralist sociologists who are more focused on the ‘barriers out there’ (2008, 1). The psycho-emotional register is progressive because it seeks to consider what ‘disabled people can be’ rather than what ‘disabled people can do’. But this approach is also sensitised to an exploration of indirect and direct forms of psycho-emotional disablism. Direct forms can be found in discriminatory interactions, acts of invalidation, patronising responses of others and hate crimes such as the destruction of group symbols and hate literature (Sherry 2000). Indirect forms of psycho-emotional disablism are less overt but just as damaging. They may emerge as side effects of structural disablism (a feeling of dislocation in a building that is largely inaccessible) or unintended actions, words or deeds (such as stares of curious others, patronising attitudes, need-freak requests for assistance) (see Liddiard 2014). How are disabled people, their partners, families and allies meant to respond emotionally to these questions? By accommodating non-disabled people, perhaps offering a smile, a short answer and a response that will not make the non-disabled person even more uncomfortable. Anger, violence or rejection on the part of the disabled person would no doubt be understood by the non-disabled inquisitor as a rude emotional response of someone with a ‘chip on their shoulder’. Ironically, it would at the same time serve to embody the stale ableist trope of the angry, bitter crip. Liddiard (2014, 124) recognises both the complex management of feeling and the relational politics inherent to responding in the right ways as forms of skilled emotional labour, as disabled people come to take on the diverse roles of teacher, negotiator, manager, mediator, performer and educator’ in negotiating their reactions and responses – enacting forms of skilled inter-personal labour desired by the very western labour markets from which they are largely excluded (see Exley and Letherby 2001). Hochschild (1983) is clear: there are appropriate affects to display in these moments of interaction. Families with disabled children and disabled children themselves have described the affective labour that they are forced to engage with to manage the emotions of others (Runswick-Cole 2013). Disabled people have articulated the emotional work and labour required within their loving and sexual relationships with close others, showing that such labour can reach the most intimate spaces of life and self (Liddiard 2014). 208 D. GOODLEY ET AL. In our respective work, each of us has previously drawn on Hochschild’s work to explain the ways in which disabled people engage in disabling forms of emotional labour (Goodley 2016; Liddiard 2014; Runswick-Cole 2010, 2013); as disabled people, their partners and their families find themselves caught up in interactions with non-disabled people that are governed by a number of well-known social scripts (Goodley 2016; Runswick-Cole 2013). These scripts invite non-disabled people to interact with disability that permits, for example, the asking of inappropriate, demeaning and highly personalised questions and commentaries we outlined at the start of this section. Affect is deeply embedded in cultural norms. Hughes (2009, 2012, 2015) points out that disabled people are associated with a cultural history of disgust, pity and fear. This renders disabled people as objects of ambivalent feelings from wider non-disabled society such as resentment and hatred. Disabled people risk being ontologically invalidated by the disabling worlds that they inhabit. Hughes (2009, 408) argues that: The role of fear … is hugely underplayed in personal tragedy theory. So to is the role of disgust, a mediating emotion in the relations between disabled and nondisabled people that is in need of considerable development. Hughes’ work builds sociologically on the psychological and psychoanalytic analysis of Marks (1999a, 1999b, 2002) that sought to probe unconscious responses to disability. Marks powerfully argued that being subjected to the damaging pathologising projections of others risked being internalised by disabled people: where the projections of societal norms of dependency and bodily imperfection are internalised, only to sit ambivalently, often shamefully, with one’s psychical position in a disabling world. (Marks 1999a; 21) Such feelings of emotional and ontological invalidation risk self-harm and self-hatred (Marks 1999b, 615, also see Hughes 2009). Goodley too has deployed social psychoanalytic concepts to explain further the generation of fear, disgust but also attraction in relation to disability displayed by non-disabled culture (Goodley 2011, 2014, 2016). This analysis was indebted to the writings of Marks (1999a, 1999b, 2002) and Watermeyer (2013) who as therapists trained in the psychoanalytic tradition are far more skilled in deploying this theoretical language. Both were keen to understand the ontological damage done to disabled people whilst living in a society that veers from not recognising disabled people as valued members of society to conceptualising disability solely in terms of deficit and lack. Marks and Watermeyer are keen to take seriously the emotional lives of disabled people and do so with a keen interest in the socio-cultural conditions in which one’s psycho-emotional life thrives or fails. Clearly, living in such a dismissive atmosphere risks causing feelings of invalidation. Also, we know that a precarious sense of self becomes heightened in times of austerity (Flynn 2017). Goodley’s (2011, 2016) interest in deploying psychoanalysis was less with disabled people and more with non-disabled people. In particular, he DISABILITY & SOCIETY 209 played around with the idea of the psychopathology of the normals, which considers the ways in which the precarious nature of living with being non-disabled (or able-bodied or able-minded) inevitably plunges individuals into emotional turmoil (Goodley 2014). One easy route out of any psychic trouble is projection: finding failings in others. We therefore might understand feelings of disgust or fear (or attraction for that matter) as symptoms of the underlying neurosis on the part of non-disabled people. Hence, disability becomes disavowed by normative culture: it is rejected (because it symbolises lack) and adored (because of its association with dependency which is the human condition desired by most of us caught in the terrors of adult autonomy). While some affect theorists consider the field to be in part a rejection of the psychoanalytic ownership of the affective register, psychoanalysis may be critically reappropriated to make sense of wider cultural formations of emotion. Indeed, Gorton (2008) and Duschinsky, Greco, and Solomon (2014) draw on related concepts of attachment and fantasy in their interrogation of affective culture. Duschinsky, Greco, and Solomon (2014, 232) note that the idea of attachment might well be the best way to engage with a vital question left behind by Foucault: why we emotionally invest in the cultures and institutions which discipline our identities and limit our potential to flourish. For Duschinsky, Greco, and Solomon (2014) this is the root of Berlant’s affective notion of cruel optimism: ‘an optimistic attachment is cruel when the object/scene of desire is itself an obstacle to fulfilling the very wants that bring people to it: but its life-organising status can trump interfering with the damage it provokes’ (Berlant 2011, 227). The consequence of such cruel optimism risks causing emotional distress, as one fails to match up to the labour and consumption demands of late capitalism. One route out of such distress is to unconsciously view and locate failure in others. This might help us explain the cultural disavowal of young people with LL/LTIs and their families. We might understand the broader cultural politics of emotion or affect economy (Ahmed 2004) – against which interactions such as those already described take place – as one being framed by ableism (Campbell 2009; Goodley 2014). Ableism is associated with the broader cultural logics of autonomy, self-sufficiency and independence. These logics are unquestionably and uncritically linked to psychological contentment and the affect of happiness. Ahmed ([2007] 2008) urges us to shake up our taken-for-granted ideas around happiness. Indeed, her critique of the pursuit of happiness, which is promulgated by psychological therapies and the self-help industry, fits well with a critical disability studies rejection of neoliberal-ableism. The latter discourse similarly propels the individual citizen towards an end of point of supposed contentment through the never-ending performances of labour and consumption. Happiness is to be bought, and so is able-bodied and able-mindedness. Here we can see further connections with Berlant’s (2007, 2010, 2011) cruel optimism: the mistaken desire and belief that we will reach personal fulfilment and happiness through working and shopping hard enough. Happiness, for Ahmed ([2007] 2008), can be understood as a promise or aspiration, a habit.

(Fiona Kumari - Professor of Disability and Ableism Studies in the School of Education & Social Work @ University of Dundee, “The violence of technicism: Ableism as humiliation and degrading treatment,” Ableism in Academia: Theorising experiences of disabilities and chronic illnesses in higher education, UCLA Press, 2020, Stable URL: https://www.jstor.org/stable/j.ctv13xprjr.18)

We do not normally think of inaccessibility as a form of inhumane and degrading treatment. The Price case was a test as to whether inaccessibility came within the remit of Article 3 of the ECHR. Article 3 states that ‘No one shall be subjected to torture or to inhuman or degrading treatment or punishment’. This is an absolute right with no exemptions or limitations. The Court is required to take into account all the circumstances of the victim. In The Greek Case (1969) ‘degrading treatment’ is defined as ‘deliberately causing severe suffering, mental or physical’ and ‘inhuman treatment’ that ‘grossly humiliates the […] individual before others or drives him to act against his conscience’. In Tyrer v. the United Kingdom (1978), the European Court of Human Rights stated that it was enough for the victim to be humiliated in his or her eyes and not necessarily in the eyes of others. Inaccessible environments are not benign: they occur through a lack of insight, conditioned by the practices of ableism, into the situation of difference being modelled on the illusory notion of the normative (benchmark) human being. In Price the court concluded that inaccessibility is ipso facto material and ontological violence – a form of degradation and debasement, even if the parties to the action did not intend to violate the psychic and bodily integrity of Price. This is an extraordinary judgment, a radical decision swept under the carpet, through a process of restricting the decisions to only prisons and psychiatric facilities.2 Universities are, however, on notice, as inaccessible environments constitute humiliation and debasement. The European Court of Human Rights reaffirmed the decision in Tyrer (1979) and found that Price’s Article 3 rights had been violated despite the lack of ‘any positive evidence of an intention to humiliate or debase’. Inaccessible relations hurt and as such constitute an assault on beingness and shape our ontological character. Humiliation caused by inaccessibility can lead to low self-esteem, social phobia, anxiety and depression, pointing to a link between humiliation and ableist practices as a form of harm (Hartling and Luchetta 1999; Torres and Bergner 2010). Torres and Bergner (2010) identify four key elements of humiliation on which there is general consensus in the literature, namely • Calling into question a status claim • There is a public failure of the status claim • The degrader has status to degrade, highlighting asymmetrical power relations • There is a rejection of the status to claim a status, that is, a disabled academic is denied recognition of their claim to discrimination There is no room in the chapter to discuss the phenomenon of microaggressions: demeaning implications and other subtle insults against minorities that may be perpetrated against individuals due to gender, race and religious difference, sexual orientation, and disability status (Solorzano 1998). Suffice to say that there is an interconnectivity between microaggressions and humiliation. Relations that read differences as forms of subordination and signs of deficiency produce suffering that humiliates and debases. I have used the term ontoviolence to capture these effects that literally seep into the interior spaces of a ‘cast-out’ person’s beingness (ontological framing), producing instant, longer-term and accumulated effects of defilements of the body and mind. As Guru (2011) reminds us, humiliation always has a context, as does the Convention’s preamble, which understands the production of disability to occur within the context of interactions. Context and responses of technicism within universities towards the disabled academic often mask humiliating practices. Indeed, acts of humiliation are a direct attack on equality measures and run counter to an ethos of celebrating diversity. This is because humiliation is only possible when an individual already possesses a sense of self-determination: it is an assault on the selfrespect of the victim. As Parekh (2011, 23) puts it, disabled academics ‘have a certain view of themselves and the kind of minimum treatment that is due to them. When this is denied and others’ treatment of them falls below their expectations, their self-respect is violated.’ The very existence of a system of equality law raises reasonable expectations on the part of the disabled academic; however, it is the negation of a disabled academic’s experiences – an act of ontoviolence that results in the caustic harm of humiliation. Ableist practices erode confidence in institutional mechanisms to resolve inequalities and are manifested by accumulated experiences of ableist defilements. Interestingly, there is a school of thought that argues that when self-respect and a sense of entitlement are lacking, individuals do not experience of sense of humiliation (Parekh 2011). I am not convinced; internalised ableism means that in order to survive some disabled staff may accept or tune out ableist interactions. Equally, from the perspective of perpetrators, it is difficult to prove intentionality where the norms around the debasing of disability are so insidious and commonplace that they may not even arise as a conscious form of negative intentionality – that is, how institutions respond to disabled people. We may ask whether intentionality matters in the final instance; should we instead be focused on the effects of the ‘event’? One example given by Inckle (2019), a disabled lecturer at the University of Liverpool, in response to a request for reasonable adjustment, illustrates this point: ‘The university might deem it reasonable for you to go downstairs on your bottom in some situations rather than schedule you into fully wheelchair accessible rooms.’ I cannot even fathom a situation whereby the above-mentioned expectation would be considered reasonable. Again, Parekh (2011, 25–6) concludes that ‘humiliation is most effective when it is so deep and pervasive that it is no longer recognised for what it is, but that does not gainsay its reality’. Humiliation can involve some not-so-self-evident ironies: a sense of technicism’s reductio ad absurdum. At my institution there is online diversity training about disability produced by an equality consultancy business that I believe contains certain offensive assumptions and viewpoints about disability, yet in order to comply with equality training protocols, disabled employees are required to complete these packages, to further submit to humiliating practices as part of their employment contracts. Inckle (2019) points to another one of these ironies: her academic department is the School of Law and Social Justice and the vice-chancellor of the university was awarded a damehood on the basis of services to equality. Bringing about complaints means being ushered into processes within the university that further humiliate and silence, where the onus of proof is on the disabled academic to prove the validity of discrimination. This ontoviolence has the effect of sanitising technicist ableism and redirecting attention away from a university’s equality obligations. Ultimately it diminishes the contributions of disabled academics to the intellectual life of universities. This chapter has threaded together the practices of ableism within universities in spotlighting the forms of technicism engaged and weaponised to harm and humiliate disabled academics as they go about their work. It is clear from European case law that inaccessibility is a form of ontoviolence and that there is a direct relationship between accessibility and discrimination.

(Steven - Ph.D. student, Centre for Disability Studies University of Leeds, “Access to work or liberation from work? Disabled people, autonomy, and post-work politics,” Canadian Journal of Disability Studies 4.2, 2015, https://cjds.uwaterloo.ca/index.php/cjds/article/view/212/398)

A phrase which has been frequently used on the ‘left’ in the UK and Europe is “the Right to Work”.x One recent example of this is a campaign of that name led by the orthodox MarxistSocialist Workers’ Partyxi and the public sector trade unions, which focuses on “fighting job losses” (Right to work, n.d.) and attempts to defend and preserve the public sector against austerity measures. However, this agenda does not question the system of heteronomous wage work as a primary means of organizing society. As Gorz (1999) points out, the demand for the ‘right to work’ – as if it were a citizenship right – is tied up with the valuation of paid employment as an essential component of social status, which, even if ‘full employment’ were to be achieved, would still leave many disabled people excluded from the status of full members of society (p. 64–5). Counter posed to this is the demand of disabled activists such as Sunaura Taylor (2004) for a “right not to work”: Shouldn’t we, of all groups, recognize that it is not work that would liberate us (especially not menial labor made accessible or greeting customers at Wal-Marts across America), but the right to not work and be proud of it? ... What I mean by the right not to work is perhaps as much a shift in ideology or consciousness as it is a material shift. It is about our relation not only to labor but the significance of performing that labor, and to the idea that only through the performance of wage labor does the human being actually accrue value themselves. It is about cultivating a skeptical attitude regarding the significance of work, which should not be taken at face value as a sign of equality and enfranchisement, but should be analyzed more critically. (para. 20) Graby, “Access to work?” CJDS 4.2 (May 2015) 147However, this demand is neither new nor exclusive to disabled people —as Kropotkin wrote a century ago: We must recognise, and loudly proclaim, that every one, whatever his grade in the old society, whether strong or weak, capable or incapable, has, before everything, the Right to Live, and that society is bound to share amongst all, without exception, the means of existence it has at its disposal.... Enough of ambiguous words like ‘the right to work’, with which the people were misled in 1848, and which are still resorted to with the hope of misleading them. Let us have the courage to recognise that well-being for all, henceforward possible, must be realised. (Kropotkin, 1913, pp. 42–3, emphasis in original)As the Anarchist Federation (2008) argues, “The right to work is the right to misery and denies the possibility of the right not to work” (p. 16); thus, anti-cuts campaigns that make the ‘right to work’ their focus leave disabled people, the group most severely affected by the cuts, unrepresented and implicitly unwanted in their activism. This constitutes an example of what the Canadian anarcho-communist collective Common Cause (2013)describe as the ‘dual consciousness’ of non-disabled workers, in that, while on one level it involves workers fighting back against a reorganization of capital that results in the loss of their income, it simultaneously entrenches capitalist values and excludes those who are most acutely oppressed by the ideology and the material reality of wage labour. As Marta Russell (1998, argues, “[to] buy into the capitalist propaganda that work is god, that people are labourers first and human beings second, serves only to oppress us all” (p. 83).

What is the relationship between extinction and disability? One of the ways in which we might think about disability and disability studies is as requiring an expansion of conditions of justice; this is how Martha Nussbaum has criticized the liberal tradition of fairness and personhood. We should, she argues, extend considerations of fairness to include those who care for others. If we think about a world that enables human capacities and flourishing, then we need to look beyond autonomous and self-defining individuals. Disability considerations would both enhance and extend the range of political compassion, enabling a notion of persons that is not merely that of the abstract political subject, but a being with capacities and dignity; capacities are richer and more varied than our narrow notion of person currently allows (2006). For Nussbaum we will live in a better world if we expand our notion of capacity and what counts as a flourishing human life. In what follows I want to reverse this relation, and rather than expand capacities and justice to allow for disability (with disability being the secondary consideration), I want to see disability as the primary or transcendental condition from which the supposedly “normal” person derives, and further to see the long history of the “normal” subject as directly intertwined with the accelerated extinction of humans and non-humans. If one considers the subject of capacities from which Nussbaum begins her critique – the liberal person, blessed with reason, autonomy, “favorable” social conditions and an enlightened milieu of political deliberation – one would need to recognize the long history of enslavement (of humans and non-humans), exploitation, appropriation and colonization that made even the thought of the just society possible. Disability is not an added on concern but is precisely what orients, if silently, the problem of extinction. One might say, that “human” existence is constitutively disabled (or, to follow Bernard Stiegler, that its default condition is dependence upon a broad network of technologies and archives that have never been equally distributed (Stiegler 1998, 122). Further, the capacities that enable the “able” person have cost, and continue to cost, the earth. Those lives that are (to borrow from Nick Bostrom [2013]) “technologically immature”, may perhaps not be lamentable and to be avoided at all costs, but perhaps offer a trajectory for life that is not necessarily that of extinction. Even though the specific concepts of extinction and disability are rarely explicitly linked the two concepts are inextricably intertwined in discussions of what counts as a life worth living. Indeed, the grand Socratic notion that the unexamined life is not worth living, is not only normative (which is almost unavoidable) but normalizing: to privilege the life of examination is to open up a history that will generate the individual, reflective, deliberative and rational subject, but to make a claim about a life not worth living is to hint at the long history that will extinguish, eliminate, harness and evaluate unworthy lives, and will do so precisely by way of capacity. Outside explicit work on extinction and outside the rich field of disability studies it is possible to find constant and complex linkages between the question of the worth of life (its capacity or ability) and whether such a life ought to exist. Many such arguments are utilitarian; and while utilitarianism might seem to be but one branch of (analytic) philosophy, part of my argument will be that as a conception of the liberal subject of capacity gains ascendency and takes on increasing value in neo-liberal arguments for autonomy, and as the planet faces accelerated and mass extinction, a utilitarian logic becomes increasingly dominant. Utilitarianism is a motif that will necessarily haunt questions of extinction and capacity: as resources and the capacity to survive become threatened decisions will need to be made regarding the worth of life. Precisely in this respect it is utilitarianism that has also articulated the most offensive position on disability. By offensive, here, I am not referring to an affect or emotion, but rather – as in the manner of a military offensive – a direct and forthright targeting of what has been set aside as “disabled. Here, it might seem that a utilitarian approach is partial, and that there are other ethical paradigms, which of course there are; but I want to argue that the extreme positions that utilitarianism has yielded, bring to the fore what is implicit in a broader history of ethics focused on personhood and a life worth living. One of the objections to calculations of utility would be by way of a deeper or inviolable conception of the person, but this too relies upon distinguishing between what counts as “utility” and what would warrant a mode of “dignity” beyond calculation. For Nussbaum, the key stakes of justice lie in considering what counts as a dignified life, where dignity includes capacities that extend beyond social utility and mutual advantage. Her claim is that dignity should be the basis for social entitlements, and that we attribute dignity not for rational and active powers, but for “our” animal fragility: “bodily need, including the need for care, is a feature of our rationality and our sociability; it is one aspect of our dignity, then, rather than something to be contrasted with it” (2006, 160). This is perhaps why Nussbaum’s title refers to “species membership,” as though feeling and caring for one’s kind (which would, in part, include non-human animals) is not only a recognition of dignity, but dignifies one’s own life. To suffer, to be fragile is to possess a life worth living. Here, Nussbaum refers to the value and enhancement (beyond strict utility) of caring for others, and of having social relationships with those whose capacities are not those of the classic rational individual; her approach on capacities “includes the advantage of respecting the dignity of people with mental disabilities and developing their human potential, whether or not this potential is socially “useful” in the narrower sense. It includes, as well, the advantage of understanding humanity and its diversity that comes from associating with mentally disabled people on terms of mutual respect and reciprocity” (2006,147). Nussbaum presents her account as a broadening of theories of human justice by way of a more classical conception of the life worth living, one not reduced to narrow notions of mutual advantage. Even though her discourse and disciplinary terrain might appear to be strictly philosophical, the very mode of posing the question of what we owe to a life is really (ultimately) the question that presses itself upon human civilization now, and always. As “we” look to the future and the sixth great extinction event the question of who and what survives will be imposed upon us. Utilitarian approaches to this question are, as I have already suggested, offensive, but they are because they disclose something offensive – or combative, violent, conquering – in the philosophical tradition of dignified humanity and the life worth living. In this respect, disability is neither a recent nor a local concern: the very formation of the Greek polity is based on the exclusion of those with lesser capacities. Even though, as Lennard Davis (2013) has argued, the notion of the “normal” body is very recent and is quite different from earlier cultures’ conception of an ideal body that no actual member of the species achieves, the exclusion of those who do not possess the proper potentiality of political humanity has been at the basis of the history of the Western polity. When Nussbaum argues for an expanded sense of capacities she nevertheless, and necessarily, maintains the question of the life worth living. This classic philosophical question always and necessarily invokes ability, or, more accurately, disability, and this in two respects. Not only are subjects defined by way of powers (of reason, deliberation and empathy), those capacities in turn are enabled by a history of technologies and archives upon which “able” subjects are increasingly dependent. At the very least, definitions of proper political persons rely upon quite specific capacities that, even in expanded scenarios are not all-inclusive. More importantly, the quite specific concept of the liberal, deliberative, rational and empathetic subject depends upon a history of “enlightenment” that disabled many lives, either by way of exclusion, colonialism, resource depletion, or expropriation. In a world where not all lives matter to the same extent, the concept of disability is precisely what enables political inclusion, privilege and personhood. When Peter Singer argues, in a manner that appears to be exceptional, and exceptionally offensive that rationality and autonomy (and not species membership) are the capacities that would preclude us from being right in killing another human being, he is taking part in a far broader offensive that is definitive of the philosophical epoch oriented around the question of the life worth living. Not only is the question of the life worth living offensive (in its implicit generation of an unworthy life), the life worth living is a life of dependence and incapacity, generated through a history of enlightenment that is a history of appropriation, plundering, brigandry, excessive consumption and energy profligacy. Could we have the able political subject of deliberation and reason without the planet-destructive history of industrialism and globalism that at once enables and disables what has come to be known as humanity? Could there have been a tradition of “the life worth living” without a global industry that generated unworthy and dis-abled lives? And is not the question of the life worth living, the capable life, intertwined essentially with dependence and incapacity? What I want to question here is whether such a question can have any coherence at all in an epoch of extinction: to ask about lives worth living is necessarily to be offensive, asserting some lives over others, and thereby waging violence (however slow) against some forms of life. If, as I would also argue, any epoch of thriving and fecundity takes place at the expense of some lives, then all ages are ages of extinction. What makes our time – the sixth mass extinction – more intense is that questions that have always haunted political personhood are now becoming more explicit. The interrelated problem of capacity and extinction has not only determined the human lives that are deemed to be worth living, but has also generated the liberal political person whose autonomy, productivity, super-intelligence and heightened capacity for urbanity is the “Anthropos” of the Anthropocene, the “man” whose cost to the planet is too exorbitant to reckon (Luke 2015). When (today) utilitarian arguments are explicitly offensive, or make the claim that some lives ought not be lived, they reveal the offensive (combative, polemical, violent, barbaric, sacrificial) nature of what has called itself civilization. If this civilization, today, is facing extinction and therefore pressed – more than ever – to consider ways of “weighing lives,” it may either continue with ever more nuanced and expanded conceptions of the worth of life, or it may regard this question itself as an indictment of the very rationality it seeks to save. Phrased differently, we might say that the problem of disability runs to the very heart of the extinction-logic that enables the political tradition of the person. Both those who assume that the human species – because of certain capacities.

The social model of disability and the concepts of ‘independent living’, and ‘user involvement’ or ‘co-production’. I want to look at the way governments have colonised and corrupted these ideas, and to start to identify some possible responses which may help with future progress on disability policies. The significant shifts in policies affecting disabled people’s lives which have taken place over the last 20 years have been influenced by organisations and individuals working both inside and outside the key decision-making bodies. Both approaches involve, to a greater or lesser extent, negotiating one’s way across the policy agenda and require degrees of manoeuvring to make progress. This can include adjusting one’s language to suit the prevailing discourse: many organisations now seeking funding find they need to use language which fits within the ‘Big Society’ agenda, whereas a few years ago it was politic to use terms such as ‘active citizenship’. Some policy agendas are more amenable to advancing disability equality than others: the human rights agenda, for example, has provided particularly fertile ground over the last ten years, leading to the UN Convention on the Rights of Disabled People, which is now being used by disabled people in Britain and elsewhere to pursue the goal of independent living. These are examples of the various ways in which people seize opportunities to work within dominant political agendas, in that disabled people (and progressive professionals and civil servants) seek out the words and phrases which will resonate with the dominant discourse. As Mike Oliver and Colin Barnes identify, the dilemma for disabled people’s organisations is that ‘To get too close to the Government is to risk incorporation and end up carrying out their proposals rather than ours. To move too far away is to risk marginalisation and eventual demise’ (Oliver and Barnes, 2006). One key example of past successes in finding opportunities within prevailing political agendas concerns the campaign for direct payments. The resulting legislation, passed by a Conservative government in 1996, fitted in with an agenda which sought the privatisation of services and an undermining of public sector trade unions. While disabled people’s organisations did not support such policies, we did – when making the case for direct payments – use language which fitted well with the individualist political framework which was becoming more and more dominant. Thus we emphasised disabled people’s rights to autonomy and self-determination, which resonated with the Conservative Government’s agenda; and drew attention to the way a lack of choice and control could undermine human rights, which then fitted well with New Labour’s agenda. My concern is that – in engaging with the dominant policy agendas – we have lost touch with more fundamental issues concerning the welfare state, and that we have, unintentionally, contributed towards a steady undermining of collective responsibility and redistribution. From my perspective, this matters because I do not believe that the alternative – a small state and a market of private providers – will deliver the opportunities and quality of life which disabled people should expect in the twenty-first century. 3 Introduction I should make it clear that it is not my intention to undermine or criticise the valuable work that disabled people’s organisations have done over the last 20 years, influencing governments to develop and implement policies intended to improve disabled people’s life chances. My research since 1990, and my subsequent work with the Prime Minister’s Strategy Unit and the Office for Disability Issues, relied on the pioneering ideas and campaigns of disabled people and their organisations. Like them, I looked for, and took advantage of, whatever opportunities there were within the prevailing political climate – in the way I have described above. However, the current onslaught on services and benefits has led me to conclude that there is very little scope for making progress within the current political agenda. This discussion paper is an attempt to take stock and propose more fundamental changes which I believe are necessary if disabled people are ever to achieve full human and civil rights. Starting points From its earliest years, the disabled people’s movement has argued for a welfare state which would include user controlled, pro-active services, delivered within a framework of rights and entitlements and where there are meaningful rights of redress (see, for example, European Network on Independent Living, 1989). As Mike Oliver says: [the welfare state remains] an essential ingredient for the development of a truly inclusionary society. That is to say, a society in which both disabled and non-disabled people can participate and realise their full potential and where the notion of disability and all its associated deprivations are little more than a dim and distant memory. (Oliver and Barnes, 2009) This statement is predicated on the social model of disability, on the distinction made between ‘impairment’ and ‘disability’ and the contention that it is the disabling barriers of discriminatory attitudes, inaccessible environments, and lack of enabling supports which should be the focus of social policy. ‘Disability’ is the oppression and inequality that people with impairments experience as a result of these barriers, and it is possible to envisage a society in which these barriers are overcome. Linked to this is the argument that investing in the provision of support for disabled people will benefit society as a whole. Two of the key ways in which this vision was articulated during the late 1980s and 1990s are to be found in the various debates and campaigns around anti-disability discrimination legislation, and for independent living. The campaign for the Disability Discrimination Act, passed in 1995, brought about a shift away from a refusal by Parliament to even recognise that discrimination by employers and service providers existed, to an acceptance of the need for legislation to both outlaw discrimination and require the provision of adjustments to overcome barriers to equal access. This Act, and its successor passed in 2005, has the disadvantage of requiring a person to first establish that the nature and severity of their impairment comes within the definition of ‘disabled person’ laid down in the legislation and, in this respect, it is based on the medical model of disability. However, the requirement to make adjustments to the workplace or service provision in order to overcome the barriers experienced by people with impairments reflects a social model approach, although the requirement is limited by a definition of ‘reasonable’ which can include a judgement that an adjustment is too costly. A social model approach is also implicit in one part of the benefits system, the Disability Living Allowance (DLA) – a cash payment in recognition of the additional costs that are incurred as a result of impairment. The key feature of DLA (like the Attendance Allowance and Mobility Allowance which it replaced in 1992 for people of working age) is that it is not means-tested and as such is the only aspect of the benefit system which is implicitly based on creating a ‘level playing field’ for disabled people – in the same way that child benefit is intended to compensate for the additional costs of bringing up children

Restoration As an ideology seeped into every corner of Western thought and culture, cure rides on the back of normal and natural. Insidious and pervasive, it impacts many, many bodies. In response we need a politics of cure: not a simple or reactive belief system, not an anti- cure stance in the face of the endless assumptions about bodily difference, but rather a broad- based politics mirroring the complexity of all our bodies and minds. The American Heritage Dictionary defi nes cure as “restoration of health.” In developing a politics of cure based on this defi nition it would be all too easy to get mired in an argument about health, trying to determine who’s healthy and who’s not, as if there’s one objective standard. As an alternative I want to bypass the questions of who defi nes health and for what purposes. So many folks are working to redefi ne health, struggling toward a theory and practice that will contribute to the well- being of entire communities. But I won’t be joining them with a redefi nition of my own. Instead I want a politics of cure that speaks from inside the intense contradictions presented by the multiple meanings of health. Today in the white Western world dominated by allopathic medicine, health ranges from individual and communal bodily comfort to profound social control. Between these two poles a multitude of practices exist. Health promotes both the wellbeing sustained by good food and the products sold by the multimillion- dollar diet industry. It endorses both effective pain management for folks who live with chronic pain and the policed refusal to prescribe narcotic- based pain relief to people perceived as drug seeking. It both saves lives and aggressively markets synthetic growth hormone to children whose only bodily “problem” is being short. Rather than offer a resolution to this whole range of contradictory, overlapping, and confused meanings of health, I want to follow the word restoration. To restore an object or an ecosystem is to return it to an earlier, often better condition. We restore a house that’s falling down, a prairie that’s been decimated by generations of monoculture farming and fi re suppression. In this return we try to undo the harm, wishing the harm had never happened. Talk to anyone who does restoration work— a carpenter who rebuilds 150- year- old neglected houses, a conservation Notes on Natural Worlds 247 biologist who turns cornfi elds back to prairie— and she’ll say it’s a complex undertaking. A fl uid, responsive process, restoration requires digging into the past, stretching toward the future, working hard in the present. And the end results rarely, if ever, match the original state. Restoring an ecosystem means rebuilding a dynamic system that has somehow been interrupted or broken, devastated by strip mining or clear- cut logging, taken over by invasive species, unbalanced by the loss of predators, crushed by pollution. The work is not about re- creating a static landscape somehow frozen in time but rather about encouraging and reshaping dynamic ecological interdependencies, ranging from clods of dirt to towering thunderheads, tiny microbes to herds of bison, into a self- sustaining system of constant fl ux. This reshaping mirrors the original or historical ecosystem as closely as possible, but inevitably some element is missing or different. The return may be close but is never complete. The process of restoration is simpler with a static object, an antique chair, or old house. Still, if the carpenters aren’t using axhewn timbers of assorted and quirky sizes, mixing the plaster with horse hair, building at least a few walls with chicken wire, and using newspaper, rags, or nothing at all for insulation, then the return will be incomplete, possibly sturdier and defi nitely more energy effi cient but different from the original house. Even though restoration as a process is never complete, it always requires an original or historical state in which to root itself, a belief that this state is better than what currently exists, and a desire to return to the original. Thinking about the framework of restoration, I circle back to the folks who offer disabled and chronically ill people prayers, crystals, and vitamins, believing deeply in the necessity of cure. A simple one- to- one correspondence between ecological restoration and bodily restoration reveals cure’s mandate of returning damaged bodies to some former, and nondisabled, state of being. This mandate clearly locates the problem, or damage, of disability within individual disabled or chronically ill bodies. To resist the ableism in this framing a disability politics has emerged in the past forty years. It asserts that disability is lodged not in paralysis but in the stairs without an accompanying ramp, not in blindness but in the lack of Braille. Disability itself does not live in depression or anxiety but rather exists in a whole host of stereotypes, not in dyslexia but in teaching methods unwilling to fl ex, not in lupus or multiple sclerosis but in the belief that certain bodily conditions are a fate worse than death. In short, disability politics establishes that the problem of disability is not about individual bodies but about social injustice. But for some of us, even if we accept disability as harm to individual bodies, restoration still does not make sense, because an original non- disabled body does not exist. How would I, or the medical establishment, go about restoring my body? The vision of me without tremoring hands and slurred speech, with more balance and coordination, does not originate from my body’s history. Rather it arises from an imagination of what my body should be like, some defi nition of normal and natural.