Neurodiversity, epistemic injustice, and the good human life

Epistemic injustice refers to harms that relate specifically to our status as epistemic agents, whereby our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent's agency and dignity. The concept was defined by Miranda Fricker (2007), who identifies two key forms of epistemic injustice. The first is testimonial injustice, which refers to cases where testimony is unduly dismissed because of prejudiced beliefs regarding minority groups. Hermeneutical injustice refers to cases where a community's shared vocabularies have been structured in a way that unfairly distorts or stifles understanding for, and of, a minority group. In each case, there is an instance of people being harmed specifically in their capacity as knowers: individuals capable of knowing or providing knowledge. Much work on epistemic injustice has identified the operation of negative stereotypes relating to gender and race; for instance, when someone's testimony is dismissed, doubted, or accorded low credibility due to racist or sexist prejudices on the part of the listener (Dotson, 2011; Fricker, 2007; Kidd et al., 2017; Medina, 2013). But in recent years research has drawn attention to epistemic injustice in healthcare generally, and more specifically within psychiatry, pediatrics, and among people with disabilities (Blease et al., 2016; Carel & Kidd, 2014; Crichton et al., 2016; Kidd & Carel, 2016, 2019; Potter, 2015). What has been revealed is the systematic stifling of the voices and interpretive tools available to both ill and disabled persons: in particular, their information providing, testimonies, and interpretations. These types of epistemic injustice have been associated with the medical deficit model that dominates much of medical and psychiatric discourse (Kidd & Carel, 2018, 2019). Moreover, physically disabled persons' claims that they are happy and living good lives have also been dismissed due to prejudices about the possibility of living well whilst disabled (Blease et al., 2016; Carel, 2016, ch. 6). Our interest here is in the possibility that epistemic injustice may stifle forms of flourishing or routes to wellbeing among individuals with neurodivergent disabilities. Here we will focus on one particular disability, namely autism, but we also suggest that this may shed light on the more general issue when it comes to other cognitive, neurodevelopmental, and psycho-social disabilities. In our discussion of the good life we are concerned both with subjective framings that focus on feelings of wellbeing and happiness, as well as more objective framings based on the notion of flourishing or objective goods. As we discuss below, autism is widely taken to be at odds—to varying extents—with both wellbeing and flourishing, and hence incompatible with both objective and subjective conceptions of the good life. While this is one dominant view, it has been challenged by proponents of the neurodiversity conception of autism. This recasts autism as a minority neurocognitive type that is primarily disabled and devalued under current social conditions, instead of it being a medical pathology (Chapman, 2019a; Singer, 1999). In de-pathologising, and instead politicizing, autistic disablement, and distress, this view opens the possibility that rather than autism being inherently at odds with living a good life, autistic wellbeing is impeded by contingent factors. It may even be that we have been rendered ignorant of the possibility of distinctly autistic forms of thriving in certain ways due to interlocking biases, stigma, and prejudice. In what follows we aim to show that epistemic injustice may not only unjustly reduce the credibility accorded to the autistic individual by her listeners, which may marginalize her account of everyday experiences and harms. It may also—despite there being good reason to think that autistic thriving is viable—block our ability to conceive of a good autistic life, as well as to recognize the testimonies of happy autistics as such. In practice, we show how this culminates in a catch-22 paradoxical situation whereby individuals are routinely seen as happy or autistic, but rarely both. This is practically important since it does not just deny recognition to happy autistics—it also means that the actual chances of autistic flourishing are severely diminished, much as any destination will be harder to find if it has not been included on the map. But it is also important for ethical theory more generally since it indicates that minority forms of human flourishing have been blocked from view. In light of this we suggest that a shift toward what's been called the neurodiversity paradigm (Walker, 2012) will place the possibility of autistic—and perhaps other forms of—flourishing on the map, making them visible and moreover salient through acknowledging that we are a neurologically diverse species. Beyond challenging dominant conceptions of normal functioning as it is standardly taken to (Chapman, 2019a; Singer, 1999; Walker, 2012), our argument will serve the further purpose of showing that neurodiversity also challenges us to radically broaden our conceptions of the good human life. On what we call the medical deficit view, autism is classified as a neurodevelopmental disorder, indicating that it is a harmful developmental trajectory that stems from underlying neurological dysfunction. The two key diagnostic traits that distinguish it from other similar classifications are (1) social and communication issues, and (2) restricted and repetitive habits, actions, and routines (APA, 2013, p. 31).1 1 There have been long-standing controversies on the diagnostic status of these categories and the DSM has shifted criteria for many of its disorders but especially for autism and Asperger Syndrome, with the latter being removed from the DSM 5 (Solomon, 2017). We are not uncritically accepting such categories but using them as a starting point for our critical discussion. Autism is also defined as a spectrum condition, with diagnoses being given in terms of its purported severity and correlating support needs. Diagnosis is further accompanied by clarifications regarding both verbal and general intellectual functioning. While the underlying biological mechanisms are complex and heterogenous, medical deficit accounts typically associate autism with empathy deficits alongside general cognitive and sensory processing issues that are in turn taken to have an underlying biological basis (Baron-Cohen, 2008; Frith, 2003). On the medical deficit view autism is also widely taken to be at odds (to varying extents depending on the specifics of the diagnosis) with living a good human life. In public representations, metaphors widely used to represent autism include those of “the kidnapped child,” of autistic persons being held hostage behind barriers, being dead, or dying, and the more widely used warfare metaphors (also used to describe illness), of “defeating” or “combatting” autism (Gross, 2012).2 2 Such extreme and binary metaphors abound in writing about illness more generally. Describing illness as an enemy that must be fought at all costs, and as an un-mitigatable calamity, is a common, yet insidious trope in writings about illness and have been well-documented. See, for example, Susan Sontag’s Illness as a Metaphor (1978), Havi Carel’s Illness (2018), and Barbara Ehrenreich’s Smile or Die (2010) for analyses of this tendency. Representations of autism often exhibit a “totalizing narrative of tragedy” (Stevenson, 2008, p. 198), while news stories often present autism as “an unknown fear and threat, that needs to be addressed as soon as possible” (Murray, 2008, p. 3). On the face of it, this may seem supported by the empirical literature, in which autism is associated with poor outcomes (Howlin, 2000) and low wellbeing (Renty & Roeyers, 2006). Relatedly, autism is associated with poor mental health. For instance, many autistic persons experience clinical levels of anxiety and depression (Stewart et al., 2006), and suicide rates are strikingly high (Hirvikoski et al., 2016). Underlying these empirical findings, moral philosophers have often taken autism to be inherently at odds with living a good life (Barnbaum, 2008; Furman & Tuminello, 2015). One oft-cited factor here is the (purported) empathy deficit exhibited by autistic persons. The problem, as Barnbaum asserts, is that: “the person who lacks empathic ability [will] live a life that is not a good human life, a life whose good is compromised in virtue of being unable to make certain empathic connections” (Barnbaum, 2008, p. 83). More general cognitive deficits are also associated with harms. For instance, DeVidi notes how the “profound difficulties” associated with autistic cognition “make the claim to autonomy more difficult to sustain” (DeVidi, 2013, p. 189).3 3 This is not a view DeVidi endorses; rather, they are reporting what we take to be a widely held view in general. In this vein, Furman and Tuminello argue in a recent paper that regardless of the level of impairment, without medical intervention “the prospects for a child with autism living [a] good life are virtually nil” (Furman & Tuminello, 2015, p. 256). The medical deficit framing has been challenged in recent decades by neurodiversity activists. Neurodiversity proponents (Chapman, 2019a; Walker, 2012) have suggested the neurodiversity paradigm as an alternative to the dominant medicalized framing of psychiatric and cognitive disabilities. On the medicalized framing, there's a relatively restricted species-standard norm in terms of mental functioning (Boorse, 1975): if an individual falls outside of this norm and is also distressed or disabled to a “clinically significant” (APA, 2013) level, they will be taken to have a mental disorder. Autistic people, then, are considered to have a dysfunction that causes them harm, and it is this that is taken to justify the ascription of “disorder” to autistic ways of being. However, the notion of normal functioning has faced heavy criticism, insofar as the adaptive genetic diversity and plasticity found in humans render the idea that there is a restricted functional norm unconvincing (see, e.g., Amundson, 2000). There are also internal conceptual issues that arise in committing to a species functioning norm (Barnes, 2016). This is reflected in the DSM-5, where the notion of “dysfunction” is more based on value judgments than scientific discovery (Aftab & Rashed, 2020). By contrast, the neurodiversity paradigm takes neuro-cognitive diversity itself to be the norm and posits such diversity as desirable and valuable for humanity (or any human group) as such (Chapman, 2021; Singer, 1999). Neurodiversity proponents aim to de-pathologize autism and instead politicize neurodivergent disablement and distress, and in doing so mount a challenge to the notion that at least some forms of neurodivergence are inherently harmful and dysfunctional. They also suggest that research on such issues should be either led by neurodivergent people or at least participatory, in order to combat overly pathologizing narratives (Milton, 2014a). The neurodiversity framing gets much of its force via its proponents drawing on social or relational models of disability. These reframe neurodivergent disablement and distress as, at least in significant part, the product of social exclusion, marginalization, and oppression. On the medical model, impairment is the primary cause of disability and also the harm that is taken to stem from it. By contrast, on models used by neurodiversity proponents, at least a significant part of disablement is societally caused (Oliver, 1990) or the product of complex interactions between individual and society (Shakespeare, 2014). On this view, for instance, the sensory problems associated with autism are framed as stemming in significant part from needlessly inaccessible sensory environments (e.g., bright open plan offices) that discriminate against minority sensory processing profiles rather than from those sensory processing differences themselves (Booth, 2016). Varieties of this framing, which has been argued for in detail in the existing literature (see, e.g., Chapman, 2019b, 2020; Robertson, 2010), allows us to see such divergences as “neurominorities” that are not inherently harmful,4 4 This is not to deny that they come with type-specific dispositions toward certain problems, only that they are relatively harmful to the extent that they should be considered mental disorders (Chapman, 2020). rather than as manifestations of harmful dysfunctions as they are usually taken to be. Here we will not enter debates about how far the neurodiversity paradigm can be applied when it comes to the autism spectrum. These debates typically focus on so-called “severe” cases of autism, with critics suggesting that it is wrong to apply the neurodiversity perspective beyond a certain threshold (Jaarsma & Welin, 2012; Wakefield et al., 2020). For the purposes of this article, we will suppose that the neurodiversity framing can be applied to the autism spectrum to some extent at least, as even critics of the broader application of the neurodiversity framing admit (e.g., Jaarsma & Welin, 2012; Wakefield et al., 2020). We also will not commit to a single alternative model of disability, allowing instead that a variety of social and relational models may be relevant for different aspects of autism, while equally challenging the notion that autism is an intrinsically harmful dysfunction. Instead, our interest here lies in how this position challenges not just dominant psychiatric conceptions of species-standard functioning, but also dominant ethical notions of species-standard flourishing. For the neurodiversity paradigm, rejection of the species-norm is at odds not just with dominant medical accounts. It is also, we contend, at odds with both naturalist positions in the philosophical literature regarding human flourishing that exclude autistic individuals (Furman & Tuminello, 2015; Nussbaum, 2006), as well as the widespread assumption noted by researchers (e.g., Bovell, 2015, p. 265; Verhoeff, 2012, p. 429) that autism causes autistic distress to the extent that autistic individuals are inherently disposed to lower wellbeing when compared to a neurotypical norm. With this in mind, we here identify, in addition to the injustices noted by social model proponents, that epistemic injustice limits our capacity to recognize, understand, and cultivate autistic thriving and wellbeing. We suggested that the neurodiversity movement's use of social models of disability, as well as issues noted with the reliance on species-norm accounts of functioning, gives initial reason to think that the medical deficit view regarding autism and the good life may be wrong. We will now argue that the issue here is in significant part one of epistemic injustice, whereby autistic persons are subject to an epistemic double-bind that culminates in being caught in a catch-22. First, as we will cover in this section, they suffer unjust credibility deficits that stem from negative stereotypes commonly held about persons with autism. This can be broadly characterized as pathocentric testimonial injustice (Kidd & Carel, 2018) that operates broadly and pervasively, in tandem with the relevant tracker prejudices. We will discuss hermeneutical injustice regarding autistic flourishing in the following section. On the one hand, there's more general testimonial injustice when it comes to autistic voices specifically due to prejudiced beliefs regarding autism. As autistic researcher Dinah Murray has written: “Disclosure of an autism spectrum diagnosis […] is likely to precipitate a negative judgment of capacity involving permanent loss of credibility” (2006, p. 13). This describes how an unjust credibility deficit is imposed via prejudiced stereotypes about a marginalized group, constituting testimonial injustice. Autism is often associated with stereotypes that unjustly limit credibility, for example, viewing autistic persons as unreliable narrators and interpreters of social situations, lacking in understanding of social situations, or having “abnormal” perceptions. As autistic academic Melanie Yergau notes “were I to consider metaphors that have come to represent autism in the broader culture (a capacity which I supposedly lack), I might summon any number of tropes that intimate autism's occlusion of epistemic belonging and capacity” (2018, p. 54). Perhaps the clearest example is the stereotype that autistic people are “mindblind,” that is, unable to spontaneously understand other minds, and, thereby the social world. Although this theory has been shown to be untenable (Chapman, 2019b) and rooted in prejudice (Yergeau & Huebner, 2017), it is still systematically used to dismiss the validity of autistic voices (Yergeau, 2018). Other stereotypes include a limited capacity to understand social situations, inconsistency in reporting social situations, and limited understanding of humor, irony, metaphor, sarcasm, and nuance, all due to purportedly impaired cognition. These stereotypes overlook the large diversity within autism and therefore may attribute credibility deficits to autistic individuals who in fact do not have these putative traits. For instance, Mitchell (2017) reports that when he helped translate and publicize the book of autistic writer Naoki Higashida, they were beset by accusations that the voice could not be “genuine” because, for instance, the prose was too articulate, and the author used metaphor. While this will mean that autistic voices are more likely to be dismissed when they offer a variety of kinds of testimonies, here we want to focus on testimonies about autistic wellbeing or happiness. This relates specifically to the stereotype that autism and happiness are inherently at odds. As the philosopher and mother to an autistic son with high support needs, Virginia Bovell, points out: “even if the word ‘suffering’ is not always used, much of the discourse in both academic and lay communities implicitly or explicitly relates to the relationship between autism and suffering or autism and reduced well-being, relative to a neurotypical [i.e., species-standard] ‘norm’” (Bovell, 2015, p. 265). This follows a typical set of stereotypes widely held about disabled persons, whereby disability is assumed to be incompatible with living good or happy lives (Barnes, 2016). Despite being widely assumed, however, it is worth considering how many disabled persons in fact report levels of wellbeing that are only slightly lower than average levels reported by those who are not disabled (Gilbert, 2006, p. 153). Many studies report no difference in levels of reported wellbeing between groups of people with a variety of medicalized conditions and healthy controls. For example, Angner et al. (2009) studied 383 adults in the community, examining the relationship between subjective health (as assessed by the individual), objective health (as assessed by an objective measurement such as comorbidity count), and happiness (subjective wellbeing). They conclude that “medical conditions are associated with lower happiness scores only if they disrupt daily functioning or are associated with social stigma,” supporting our claim that the suffering is often extraneous to the impairment (ibid., p. 510).5 5 Indeed, even significant illness and disability, such as cancer, renal failure, and paralysis, have been shown to have a surprisingly small intrinsic effect on levels of wellbeing as such. A study compared a group of hemodialysis patients with healthy controls and found that both groups overestimated the impact of hemodialysis on wellbeing. In fact, both groups reported a similar level of wellbeing (Riis et al., 2005, p. 6). In a literature review of quality of life in cancer patients de Haes and van Knippenberg conclude that “in general the results from comparative studies are meager and do not support the assumption that cancer or cancer treatment lead to a significantly lower quality of life” (1985, p. 815). And finally, Brickman et al. report that paralyzed accident victims are only somewhat less happy than lottery winners (1978). Ubel et al. (2005) summarizes this body of evidence by saying: “People experiencing a wide range of illnesses and disabilities often report paradoxically high levels of [quality of life] and mood”. Importantly, autism slightly differs from many cases of disability insofar as autistic people do tend to have low levels of wellbeing. However, as was noted above, specific disabilities are associated with low wellbeing if they are associated with high levels of stigma or greatly impaired functioning. With this in mind, it is vital to consider that how autistic voices have consistently argued that any impediment to autistic wellbeing and functioning is best understood in terms of social barriers, marginalization, stigma, and exclusion (Booth, 2016; Robertson, 2010). For instance, Milton and Sims found that a key reason autistic people attributed to hindering their wellbeing was barriers to belonging, rather than simply their being autistic (Milton & Sims, 2016). Relatedly, Renty and Roeyers found that decreased wellbeing among the autistic population was predicted strongly by how well-supported autistic individuals took themselves to be, rather than by how significant their cognitive impairment was taken to be—a finding they argue strongly supports the social model framing (Renty & Roeyers, 2006, pp. 520–521). Are we “worse off”? I do not think so. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. In saying this, we do not mean to deny that some manifestations of autism can make life inherently harder in important respects; only that life being hard is not the same as it is at odds with happiness as such (Booth, 2016, Chapman, 2020; Carel, 2016).7 7 Indeed, hardship associated with illness and disability has been viewed as contributing toward happiness, as much as it can be detract from it (Carel, 2018; Chapman, 2020). Unless we dismiss not just the voices of those autistic individuals (and carers) who report being happy, but also the evidence indicating that diminished autistic wellbeing can be explained in reference to stigma, exclusion, and societal disablement, there's good reason to think that a tenet of the dominant view, that autism and wellbeing are inherently at odds, is itself a prejudice. For although it is true that wellbeing is currently low among the autistic population, evidence points toward this being a result of stigma and societal disablement rather than inherent to being autistic. It is important to note that epistemic injustice itself is, like disabling barriers, another form of external harm that can lower wellbeing levels. Encountering prejudice and being unfairly accorded low credibility are additional external sources of harm that can impact on one's wellbeing and therefore need to be taken into account in our analysis. In the closing section, we return to this issue and consider amelioration strategies for combating epistemic injustice toward autistic persons. We've suggested that autistic claims regarding subjective wellbeing and happiness are systematically dismissed due to testimonial injustice. At this point, it might be replied that even if we accept that autistic individuals are the victims of epistemic injustice regarding claims to subjective happiness, there are still good objective reasons to think of autism as being inherently at odds with living a good human life. This reflects a widely held belief that cognitive disability is “objectively bad, and thus something to be pitied, a personal tragedy for both the individual and her family” (Carlson, 2010, p. 5) regardless of levels of subjective happiness. While such views have been proposed from a number of philosophical perspectives, we find the clearest example among neo-Aristotelian theorists, who suggest that even those autistic individuals who are subjectively happy are only so because they do not realize that they are missing objective aspects of the good human life (Nussbaum, 2006). Here we will explain this view before arguing that this, too, is an issue of epistemic injustice. This time, however, it is a case of hermeneutical injustice, in which the ways we have constructed our ideals of human flourishing unduly exclude neurodivergent modes of flourishing. On the kind of view we have in mind, dating back to Aristotle, what is typical of the species has been relied on to delineate who is capable of living a good life, a life of flourishing or excellence (eudaimonia). This is a life in which an individual lives in accordance with their nature, achieving the highest potential of their species-specific capabilities (Harcourt, 2016). It is species-specific because, for instance, eagles need to be able to fly in order to flourish as eagles, whereas flying is not necessary for wolves to flourish (Foot, 2001; Nussbaum, 2006). Hence, as leading proponent of this view Martha Nussbaum puts it: “The species norm (duly evaluated) tells us what the appropriate benchmark is for judging whether a given creature has decent opportunities for flourishing” (Nussbaum, 2006, p. 365). When it comes to autistic individuals specifically, Nussbaum posits the necessity of “special efforts” being made for them to “attain the core capabilities that form part of that species norm” if they are to flourish (Nussbaum, 2006, pp. 364–365). For her, core capabilities include having senses, imagination, thought, and emotions in a “truly human” (Nussbaum, 2011, p. 33) way. Along with other neo-Aristotelians (Furman & Tuminello, 2015; Potter, 2015) and objective-list theorists (Barnbaum, 2008) who have focused on autism, Nussbaum thus takes the traits definitive of autistic cognition to not be “truly human,” and at odds with flourishing, unless therapy can erase the very traits that are definitive of autism.8 8 Beyond neo-Aristotelians, this requirement to fix individuals who fall outside the norm is also reflected in the work of Norman Daniels, who has been highly influential in theorizing healthcare justice. In his words: “health-care needs will be those things we need in order to maintain, restore, or provide functional equivalents (where possible) to, normal species functioning” (1981, p. 158). Thus the view we aim to counter here is characteristic of some, but not all, neo-Aristotelian views, but also of other, non-Aristotelian views such as Daniels. What those views have in common is the focus on what is typical of a species, from which an account of normal function is built, against which atypical functioning would become abnormal. Furthermore, while our focus here is on accounts that are based on the notion of species normal functioning, other philosophers who are not neo-Aristotelian, such as the utilitarian philosopher Peter Singer, have excluded cognitively disabled people from conceptions of the good human life on further grounds still. While it is highly plausible that what we are like will delineate what's good for us, associating species-normality with flourishing has been criticized as being unduly restrictive. On the one hand, Aristotleian conceptions of flourishing have tended to exclude members of marginalized groups who may need to develop specific virtues such as defiance or anger in order to resist their unjust situation, leading to the pathologisation of the very virtues made necessary by the social context (Potter, 2016; Tessman, 2005). This includes members of neurominorities, especially service users who are women and/or people of color (Potter, 2016). On the other, Aristotleian accounts tend to be at odds with the natural variation in a given species. Most relevantly, Merriam has noted that the notion that static or even temporary snapshot conceptions of species-standard norms can show us how we should live may be both arbitrary and epistemically violent toward minority disabled modes of flourishing (Merriam, 2009, p. 135). Adhering to such a model can lead to an inability to properly distinguish between inherently inhibited flourishing on the one hand, and societally disabled minority ways of being on the other (ibid., pp. 134–5) when it comes to impediments to living well as a disabled person (also see Riddle, 2014). Regarding Nussbaum specifically, one autistic self-advocate has lamented how she focuses on the voices of carers rather than disabled people, and moreover “seems oblivious to […] how—not whether, how—what we call an ‘impairment’ has been used to justify significant social disadvantage” (Montgomery, 2012, pp. 84–5). In fact, once we accept that humanity is neurodiverse—which even critics of the neurodiversity movement concede is true to some extent (Jaarsma & Welin, 2012; Wakefield et al., 2020)—and that there are many different, yet equally legitimate, ways of functioning, then it is not too far a step to consider that humanity will likely be similarly diverse in terms of routes to, and forms of, flourishing. As autistic scholar Nick Walker has proposed, since “the minds, interests, experiences, abilities, and needs of autistic people are different from those of non-autistic people, ‘thriving’ also looks different in autistic people than it does in non-autistic people”