Bridging the gap between knowledge and justice: Epistemic challenges in participatory disability research

Abstract

This article examines participatory disability research through the lens of epistemic justice, drawing (among others) on Miranda Fricker’s concepts of testimonial and hermeneutic injustice. It highlights how participatory approaches empower marginalised groups, particularly people with disabilities, to overcome exclusion from knowledge production. The article emphasises the challenges of achieving epistemic justice, especially for individuals with cognitive impairments, and advocates for epistemic humility and collaborative, inclusive research practices. By addressing these issues, participatory disability research serves as both a critique and a corrective to traditional knowledge production, fostering more equitable and transformative outcomes.

Introduction

A fundamental aim of empirical social research is to gain insights into how individuals and communities live, interact, face challenges and find ways to address them. Yet the processes by which such knowledge is generated are increasingly subject to critical scrutiny (Bergold and Thomas, 2020). In response to the perceived limitations of conventional approaches – both within social research in general and qualitative inquiry in particular – participatory research has gained prominence as an alternative paradigm. This development is particularly evident in research involving marginalised groups, such as people with disabilities or children, who have historically been positioned as passive objects of study under the assumption that they lacked the autonomy to participate meaningfully in research processes (Aldridge, 2017).

Participatory research situates itself within the broader qualitative tradition yet simultaneously seeks to distinguish itself from it (Hossain and Scott-Villiers, 2019). It emerges not merely as a methodological innovation but as a normative and epistemological response to the shortcomings of established qualitative practices. At its core, participatory research is linked to ethical imperatives: co-researchers should be involved in projects at as many stages of the research process as possible – from the solidarity-based definition of research objectives to democratic decision-making and shared responsibility for the results (Bergold and Thomas, 2020). Accordingly, participatory approaches present themselves as both emancipatory and transformative, aiming to reconfigure the relationship between researchers and participants and to foreground the voices and perspectives of those historically marginalised (Johnson and Walmsley, 2003; Nind, 2014).

This article takes participatory disability research as a case in point but situates it within the broader debate on epistemic justice (Fricker, 2007). Epistemic justice operates at the intersection of ethics and epistemology: it addresses not only who is recognised as a knower but also the conditions under which knowledge is produced, valued or dismissed. The concept is particularly fruitful because it links epistemic practices with ethical concerns such as countering marginalisation and fostering emancipation and empowerment, thereby integrating the very thrust that constitutes the epistemic and ethical driving force of participatory research. This perspective makes it possible to re-examine the ethical claims of participatory research and to reframe its central demands for participation and emancipation as demands for justice.

At the same time, it may be even more important that the focus on epistemic injustice draws attention to precisely what participatory research criticises about conventional social research – whether rightly or wrongly – namely stigmatisation, disregard, objectification and related ethically problematic practices that are either reproduced in research itself or reflect the broader marginalisation of particular groups and their living conditions. In this sense, the notion of epistemic justice not only strengthens the normative aspirations of participatory research but also provides a critical lens through which its limitations and blind spots – especially when working with people with disabilities – can be scrutinised.

The aim of this article is twofold: first, to reinterpret the emancipatory and ethical claims of participatory disability research through the lens of epistemic justice; and second, to critically assess the extent to which participatory approaches themselves risk reproducing epistemic injustices – for instance, by epistemically exploiting participants (Block, 2024), or by downplaying and euphemistically overlooking unequal communicative opportunities and structural disparities such as job security or familiarity with the epistemic standards of scientific research.

The arguments developed in this article unfold in four steps. First, the concept of epistemic justice is introduced, drawing on Fricker’s (2007) distinctions between testimonial and hermeneutic injustice as well as the notion of epistemic objectification put forward by Congdon (2017). These forms of injustice are particularly relevant in the context of participatory disability research, where people with disabilities have long been denied recognition as epistemic agents and instead positioned as objects of inquiry.

Second, the article turns to the potential levers of epistemic justice within participatory research. Here the focus lies on how participatory approaches seek to counteract epistemic injustice by involving co-researchers throughout the research process – through solidarity-based definition of research objectives, democratic decision-making and shared responsibility for outcomes (Bergold and Thomas, 2020). This section also highlights the tensions between normative aspirations and practical limitations: while participatory approaches emphasise change and emancipation as both process and goal variables (Graf, 2015), they simultaneously face significant methodological challenges, particularly in research with people with cognitive impairments (Walmsley, 2004; Walmsley et al., 2018). ¹

The third part of the article broadens the perspective and explores how participatory research raises fundamental questions about science as a social institution and about the activity of scientific inquiry itself. In this context, a relational reformulation of the relationship between research and justice is proposed. Research should not be understood merely as the production of knowledge but as a relational endeavour that requires specific ethical and institutional conditions. Two such conditions appear indispensable for epistemic inclusion: first, the development of appropriate and accessible methods; and second, the establishment of institutional structures that support inclusive knowledge production beyond the scope of individual projects.

This perspective also highlights an important tension: certain epistemic practices and individual abilities can be both prerequisites for and outcomes of participatory research. As such, they constitute conditions that participatory approaches must cultivate while simultaneously relying upon them for their own success. This circularity reveals a central challenge of participatory research – one that cannot be fully resolved but must instead be negotiated as an ongoing, reflexive task. This part seeks to contribute to the ethical and epistemological legitimation of participatory disability research by employing the concept of epistemic justice not merely as a normative ideal but as a critical lens through which the epistemic practice of participatory research can be examined. Rather than reiterating existing participatory methodologies or affirming their ethical value in principle, this section reflects on the structural and institutional conditions that shape such practices and interrogates both their possibilities and limitations. In this light, the lens of epistemic justice serves not only as a moral imperative but also as a framework for analysing how knowledge is produced, whose voices are recognised and under what conditions epistemic inclusion becomes feasible. This dual function allows for a more nuanced understanding of participatory disability research – one that acknowledges its emancipatory aspirations while also critically engaging with the methodological, institutional and relational constraints that may hinder their realisation (Fasching et al., 2019; Johnson and Walmsley, 2003; Nind, 2014; Schaefer and Narimani, 2021).

The conclusion summarises the most important points and raises the question of the extent to which the further development of participatory research constitutes educational work. This last section also revisits the challenge of legitimising epistemic practices, a point that is often overlooked in the conceptualisation of participatory research.

By foregrounding these ethical and epistemological dimensions, the article seeks not only to contribute to the normative grounding and legitimacy of participatory disability research but also to highlight the structural, methodological and relational challenges that must be addressed if epistemic inclusion is to be realised in practice.

The debate on epistemic justice: Contours and relevance

As outlined earlier, participatory disability research can only be fully understood when both its ethical and epistemological dimensions are taken into account. The concept of epistemic justice is particularly valuable in this regard, because it explicitly operates at the intersection of ethics and epistemology. Unlike traditional accounts of justice that primarily focus on the fair distribution of material resources – most notably Rawls’ (1971) A Theory of Justice – the debate on epistemic justice centres on the conditions under which knowledge is produced, recognised and shared. It thus addresses forms of injustice that arise not from the unequal allocation of economic or social goods but from systematic distortions in practices of knowing: who is heard, who is believed and whose contributions are deemed legitimate within epistemic communities (Fricker, 2007).

What distinguishes the concept of epistemic justice, then, is not simply a shift from material to epistemic goods but its insistence that questions of knowledge are always simultaneously ethical questions (Block, 2024). To treat someone as a credible knower or to provide the conceptual resources that make their experiences intelligible is not only an epistemic practice but also a moral act of recognition. Conversely, to deny credibility or to exclude someone from shared interpretive frameworks constitutes both an epistemic failure and an ethical harm. It is precisely this dual orientation that makes epistemic justice a productive framework for analysing participatory disability research, where the politics of knowledge and the ethics of inclusion are inextricably linked.

At its core, epistemic justice highlights how systemic biases and social hierarchies shape epistemic practices, often leading to the exclusion or devaluation of certain voices – particularly those of marginalised individuals and groups. These injustices are not merely distributive in nature (i.e. concerning access to knowledge) but also relational, as they affect how individuals are recognised as knowers and how their credibility is assessed. Importantly, these relational dynamics are embedded within broader institutional and structural contexts – such as science, education and policy-making – which define the norms and boundaries of legitimate knowledge.

Thus, epistemic justice is not limited to interpersonal encounters, even though it often manifests in them. It offers a critical framework for analysing how institutions regulate epistemic authority and inclusion and how power and privilege shape the conditions under which knowledge is legitimised. ² Understanding epistemic justice in this broader sense allows for a more comprehensive reflection on the ethical and political dimensions of participatory research – one that goes beyond interpersonal inclusion to address the systemic conditions of epistemic legitimacy.

One work, in particular, has shaped the contours of and debates on epistemic justice and has even founded a new field. It is the already mentioned Epistemic Injustice – Power and the Ethics of Knowing (Fricker, 2007). ³ In this book, Fricker distinguishes between two forms of epistemic injustice: testimonial injustice on the one hand and hermeneutic injustice on the other.

Fricker understands testimonial injustice as the devaluation of statements, utterances, observations or feelings of members of a socially marginalised group solely based on their group membership. A vivid example of this form of epistemic injustice that Fricker cites in her book comes from Harper Lee’s 1960 novel To Kill a Mockingbird. In the story, Tom Robinson, an African-American man, is falsely accused of raping a white woman. Despite his credible and honest statement, his testimony is discounted and ultimately ignored by the jury due to their racial prejudices and he is convicted.

While the novel To Kill a Mockingbird illustrates the injustice of witness testimony using the example of racist aspects, Scully (2020: 301f.) uses the case of disabilities to show how the injustice of witness testimony systematically undermines the credibility of people with disabilities. For example, she describes the experiences that hearing aid and cochlear implant users very often have. Many hard-of-hearing people can use so-called induction loops to hear better. ⁴ These are often installed in large concert halls, cinemas or meeting rooms. The technology on which induction loops are based has been specially developed to make hearing easier for hard-of-hearing people in public and private spaces.

So, although the technology was developed for people with hearing loss and, in most cases, is the only way for them to actively participate in events in larger halls, induction loops are often poorly maintained or do not work correctly. Moreover, that is not all: when those affected point out the problem and report that the induction loops are not working, they are often met with scepticism. For example, they are then told that the induction loops are installed, switched on and working, or they are told that the problem must be with their hearing aid. In extreme cases, there is even suspicion that the complaint is being made for other, possibly unfair reasons, such as to receive compensation in the form of free tickets.

The ethical implications of testimonial injustice are profound and far-reaching. It is not simply a matter of momentary misunderstanding or individual psychological vulnerability – such as low self-confidence or self-esteem – even though these may well be consequences of epistemic harm. Rather, testimonial injustice calls into question the very status of disabled individuals as credible knowers and equal participants in epistemic and social life. When, for example, hard-of-hearing people are presumed incapable of accurately assessing their own experiences or the functioning of assistive technologies they have used for decades, their epistemic authority is systematically undermined (Scully, 2020).

Such devaluations are not isolated incidents. They reflect and reinforce broader patterns of marginalisation that extend beyond the individual and become embedded in social structures and institutional routines. The resulting exclusions are not to be confused with misfortune or minor transgressions; they constitute injustices precisely because they are rooted in persistent social hierarchies and have tangible consequences for participation, recognition and agency. These injustices manifest in the erosion of trust in one’s own perception and judgement, and in material exclusion – for instance, when induction loops are not maintained, partly because the testimony of those affected is not taken seriously.

Over time, these patterns consolidate into stable socio-epistemic habits – entrenched ways of thinking, perceiving and responding that shape collective epistemic environments. They contribute to what Medina (2011: 29) calls ‘meta-blindness’: a socially conditioned inability to recognise certain forms of human experience and to make ethically adequate judgements. ⁵ Mills (1999: 18) similarly describes how such blindness fosters an ‘epistemology of ignorance’, in which dominant groups fail to comprehend the world they have shaped, particularly its ethical and epistemic dimensions.

This critique becomes even more pressing when considering the second form of epistemic injustice identified by Fricker (2007): hermeneutic injustice. Unlike testimonial injustice, which involves the devaluation of individuals’ credibility due to prejudice, hermeneutic injustice refers to a deeper structural problem – the absence of adequate interpretive resources to make sense of one’s experiences. It occurs when marginalised groups lack access to the conceptual tools necessary to understand and articulate their lived realities. In short, hermeneutic injustice arises when certain experiences cannot be expressed or recognised because the social and epistemic frameworks required to do so are missing.

Importantly, this form of injustice cannot be reduced to individual misfortune, psychological fragility or interpersonal misunderstanding. It reflects systemic failures in the collective organisation of knowledge and meaning. As such, it implicates institutions – such as science, education and public discourse – that shape what is sayable, knowable and intelligible. Participatory research, in its aspiration to reconfigure these frameworks, positions itself as a corrective to hermeneutic exclusion. By creating spaces in which new interpretive resources can emerge, it seeks not only to include marginalised voices but to expand the epistemic field itself.

Hermeneutic injustice, like testimonial injustice, affects not only individuals and marginalised groups but also society as a whole by impeding collective understanding of social problems and obstructing processes of social change. It is important to emphasise that this form of injustice is not reducible to temporary misunderstandings or psychological factors such as low self-confidence – although such effects may result from it. Nor should it be confused with mere misfortune or minor epistemic failures. Hermeneutic injustice arises from structural conditions that prevent certain experiences from being intelligible within the dominant epistemic frameworks of a society.

One example Fricker (2007) discusses concerns women who experienced sexual harassment in the workplace at a time when the term did not yet exist and no legal provisions were in place. These women lacked the conceptual and linguistic resources to name, communicate or socially share their experiences. As a result, their suffering remained unintelligible to society and they were unable to assert their rights in legal contexts.

Scully (2020: 302) discusses hermeneutic injustice in the context of disability and points to everyday situations in which the expertise of wheelchair users is disregarded. A frequently cited example is the interaction with taxi drivers, where a wheelchair user may be treated as if they had no idea how to fold their own wheelchair. What is at stake here is not simply a clumsy interaction but the denial of epistemic authority: the wheelchair user is implicitly positioned as lacking even the most basic knowledge of their own equipment. Yet the lived experience of using a wheelchair generates a rich and multifaceted body of knowledge – ranging from technical knowledge about types, functionality, costs and funding to social knowledge about public interactions, spatial navigation and repair practices. It also includes embodied and procedural knowledge, such as how to fold a wheelchair to fit into a car, how to manoeuvre through narrow spaces or how to handle different terrains. When such knowledge is ignored or overridden, it constitutes not only a failure to acknowledge practical expertise but also a form of hermeneutic injustice: the individual’s interpretive resources for making sense of their own experience are marginalised within the broader epistemic community.

According to Scully (2020), the injustice lies not only in the fact that this knowledge is not widely shared but in the deeper problem that it cannot easily be brought into public discourse at all. The necessary conceptual frameworks and linguistic structures to articulate these experiences are lacking. As a result, wheelchair users are not only materially and socially disadvantaged – through inaccessible infrastructure or discomfort in public spaces – but also epistemically excluded. Their perspectives are absent from the collective understanding of society, and there is a lack of vocabulary to speak precisely and appropriately about accessibility and its prerequisites.

Like testimonial injustice, hermeneutic injustice profoundly affects people’s ability to communicate their reality and advocate for their needs and rights. Without recognising and integrating their knowledge into social discourse, their experiences remain invisible – further reinforcing their marginalisation and limiting the potential for structural change.

In addition to Fricker’s (2007) conceptualisation of testimonial and hermeneutic injustice, recent contributions have expanded the discourse on epistemic injustice in ways that are particularly relevant to participatory disability research. One such contribution is Congdon’s (2017) concept of epistemic objectification. In the context of disability, this term refers to the tendency to portray the exclusion of disabled people as natural, inevitable and unchangeable. Epistemic objectification obscures the social, material and institutional conditions that produce disability and reinforces the notion that disability is primarily a medical or individual issue – something to be treated through interventions such as surgery or medication.

This reductive view positions disabled individuals as passive objects of therapeutic or medical action, rather than as epistemic agents with situated knowledge and lived expertise. It disregards the social dynamics and institutional structures that contribute to their marginalisation and silences their subjective experiences. Symbolic forms of epistemic objectification – such as staring, infantilising representations or patronising portrayals in charity campaigns – further entrench this marginalisation by framing disabled people as pitiable and dependent, rather than as knowledgeable and capable.

As a result, the epistemic contributions of disabled individuals are systematically undervalued. Their ability to participate meaningfully in knowledge communities is diminished, and their epistemic authority is undermined – echoing the mechanisms of testimonial injustice. Taken together, testimonial injustice, hermeneutic injustice and epistemic objectification reveal how deeply embedded social and institutional structures shape whose knowledge is recognised and whose experiences are rendered invisible.

Participatory disability research positions itself, at its very core, as a response to different forms of epistemic injustice – most prominently testimonial injustice, hermeneutic injustice and processes of epistemic objectification. Its normative orientation is grounded in the conviction that people with disabilities have historically been denied recognition as credible knowers, that their interpretive resources have been marginalised, and that they have frequently been reduced to objects of study rather than acknowledged as subjects of knowledge. In this sense, participatory research is not merely compatible with the agenda of epistemic justice; rather, it explicitly takes up its concerns and translates them into methodological commitments and practices of inclusion.

At the same time, this alignment with epistemic justice constitutes not only a legitimising reference point but also an ongoing challenge. The claim to counteract epistemic injustice cannot be fulfilled by declarative commitment alone. Participatory research itself must remain alert to the risk of reproducing precisely the injustices it seeks to overcome – for instance, by failing to ensure genuine epistemic inclusion, by inadvertently reinforcing unequal communicative conditions or by overlooking the structural disparities that shape who can meaningfully contribute to research.

This duality – participatory research as both a response to epistemic injustice and a site where its persistence must be critically interrogated – provides the conceptual framework for the subsequent discussion. The following section therefore turns to the ‘levers’ of epistemic justice: the concrete practices and methodological strategies through which participatory approaches seek to enable epistemic inclusion and to challenge entrenched patterns of exclusion.

The levers of epistemic justice

As mentioned, a central concern of participatory disability research is not only to give disabled people a voice and include their perspectives but also to involve them actively and on an equal footing in the research process. This participation not only aims to emancipate those affected but also to initiate a more comprehensive social change. In this context, transformation refers to the emergence and establishment of a new language and way of thinking that changes how society perceives and deals with disability. The theory of epistemic justice provides a valuable theoretical basis here. On the one hand, it enables existing injustices to be analysed in a new and unorthodox way. On the other hand, theories of epistemic justice offer a critical perspective through which traditional social science research approaches can be analysed and reformed.

In principle, participatory disability research has four possible levers or thrusts to promote or establish epistemic justice: first, as mentioned earlier, participatory disability research is about actively involving co-researchers with disabilities in different stages of the research process, from formulating the research question to collecting, analysing and publishing data. Co-researchers are thus heard in a context of the research community that is otherwise often closed to them (Hartblay, 2020). The moral demand of the disability community, ‘nothing about us without us’, is central to this integration. With the orientation towards the value of participation, the epistemic focus of research is also changing: participatory research is no longer self-referentially oriented towards the production of new research-related knowledge and thus, at least to a considerable extent, towards an academic discipline and its objects, but it also serves to broaden the epistemic horizon of the individual and thus, not least, the epistemic horizon of non-disabled researchers. Strengthening the position of disabled people in the research process, it is assumed, ensures that their perspectives and experiences are adequately considered and respected, which in turn can help to reduce testimonial injustice.

Second, the close collaboration between academically trained researchers and co-researchers who are integrated into the real world incorporates different perspectives and experiences in the research process. This joint knowledge production aims to close hermeneutic gaps by drawing on the diverse experiences of co-researchers to contribute to a better understanding and a more informed interpretation. Participatory research approaches actively involve people with disabilities and turn them into co-researchers. This is to ensure that the questions and insights gained in research are genuinely relevant to them. At the same time, this collaboration aims to create a world that is hermeneutically richer and more diverse.

Third, participatory research approaches challenge traditional hierarchies and power relations in academic knowledge production by recognising people with disabilities as equal partners (Cornwall and Jewkes, 1995). A participatory research practice aims to help combat epistemic objectification by recognising and including the social and structural dimensions of disability in research. ⁶

Fourth, an important form of subjectivisation is achieved through the consistent participation of co-researchers. In this way, both the emancipation of the co-researchers and a further transformation of society can be achieved. Participatory disability research therefore aims at changing social power structures and at making highly vertical and hierarchical relationships more horizontal and thus more egalitarian.

Participatory research and the relational pursuit of epistemic justice

The four levers often associated with the promotion of epistemic justice – active participation, closing hermeneutic gaps, counteracting epistemic reification and fostering subjectivation – indicate that participatory research does not merely aim at emancipation in the narrow sense of granting access or voice. Rather, it addresses the more fundamental question of how knowledge itself is produced, validated and disseminated (Redmond, 2005). From this perspective, participatory disability research operates within a relational paradigm: knowledge is not conceived as the possession of individuals but as the outcome of collaborative processes shaped by social relations, institutional frameworks and methodological design.

This relational orientation, however, brings into view a central difficulty. Scientific research is closely tied to the production of propositional knowledge, that is, knowledge that is intersubjectively accessible, systematically structured and communicatively valid. While indispensable for coherence and critical scrutiny, this form often sits uneasily with practical and experiential knowledge conveyed in non-academic terms. The challenge is particularly evident in research involving people with cognitive disabilities, where the translation of everyday knowledge into academically recognisable formats is both methodologically demanding and epistemologically delicate. It requires sensitivity to the hermeneutical challenge of recognising lived experience as a meaningful epistemic contribution.

Milner and Frawley (2019) highlight this point in their critique of the assumption that people with learning disabilities lack the capacity for abstract reasoning because they interpret new information mainly through the lens of lived experience. They argue that this view underestimates the epistemic significance of personal experience and reflects the limitations of dominant paradigms privileging abstraction over situated knowledge. Catala’s (2020) analysis of epistemic agency supports this relational view. She distinguishes between propositional, practical, embodied and affective forms of epistemic action, each of which is shaped by social interactions, institutional contexts and situational factors. Propositional agency, for instance, depends not only on the ability to articulate arguments but also on the openness of others to receive them; embodied agency is mediated by social attitudes towards one’s body; affective agency is conditioned by cultural norms of emotional expression. Catala’s (2020) account reinforces the insight that epistemic action is never individual or context-free but relationally embedded. For participatory research, this means that epistemic inclusion cannot be reduced to individual capacities alone but requires supportive environments and institutional responsiveness.

The relational perspective also entails a redefinition of the responsibilities of researchers. Participatory projects are not only oriented towards the empowerment of co-researchers; they must at the same time remain vigilant against reproducing asymmetries through protective or paternalistic practices. As Redmond (2005: 82) reflects from his own experience with disabled co-researchers:

In particular, the power and responsibility I had with regard to my co-researchers was significantly different to that which academics encounter when co-researching with other academics. Instead, the responsibility to those vulnerable groups of people who act as co-researchers appears to be similar to those that we have towards respondents. Indeed, while I clearly felt that I had a responsibility to empower my co-researchers, I seemed to have a more fundamental and overriding moral, ethical and, perhaps, legal responsibility, which was to care and possibly protect. Yet the two principles, to care and to empower, often appear as being diametrically opposed.

This passage highlights a central dilemma of participatory research: the challenge of fostering empowerment without sliding into paternalism. Practices of epistemic care (Block, 2024), broadly conceived, encompass not only attention to the well-being of those involved but also to the processes of knowledge development, to reciprocal responsibilities and to the integrity of collaboration itself. Yet such practices are difficult to achieve in academic contexts, where research relationships cannot be equated with private or therapeutic forms of care.

Other issues concern the tensions between relational integrity and methodological rigour. Veck and Hall (2020: 1087) thus advocate for a ‘dialogical educational research’ in which participants are regarded as ‘informed co-researchers’ rather than passive informants. They stress that inclusive research should ‘generate opportunities for researchers and researched to be realised as unique persons and to be educated about how the world is now and how it might be changed for the better’ (Veck and Hall, 2020: 1083). While they warn that rigid methodological frameworks risk undermining authentic engagement, methodological design also safeguards epistemic integrity by ensuring that contributions are evaluated within transparent and reflexive structures. Method and relationality, rather than being opposed, can thus be seen as complementary.

Decision-making power thus represents an essential dimension. As Rojas et al. (2013) argue, participatory research requires not only listening to participants but also ‘giving the power to choose what is researched’. This demand underlines that epistemic justice involves redistributing authority at the very outset of research, though it also raises difficult questions about feasibility in institutional contexts shaped by funding priorities, academic conventions and policy demands.

Attention must likewise be paid to the environments in which research takes place. Engeström’s (1987, 1996) concept of ‘zones of proximal development’ suggests that knowledge emerges most effectively in collective and situated contexts rather than abstract or idealised ones. Kukla (2021) makes a related point in advocating for a ‘naturalised epistemology’ grounded in the complex realities of human experience rather than in idealised models of rational agency. Donnellan et al. (2012) illustrate the practical consequences of this perspective in their participatory study with autistic co-researchers, which required extensive and sometimes highly individualised adaptations: some participants responded only in writing and in advance, others only by telephone, and one only while in a warm bath. These adaptations demonstrate both the possibilities of relational inclusion and the substantial resources such inclusion demands in terms of time, funding and flexibility.

Two conditions therefore appear essential if participatory research is to realise its epistemic aspirations: first, the creation of institutional and communicative environments that genuinely enable epistemic participation – for example, through translation services, easy-to-read formats or sign language, alongside researchers capable of mediating in both directions between experiential and propositional knowledge. Second, adequate temporal, financial and organisational resources must be secured to sustain these conditions. Without such embedding, the relational claims of participatory research risk remaining at the level of normative programmatics.

Yet, these requirements point to a series of unresolved tensions, not only with more conventional research but also with participatory approaches. Co-researchers are expected to inhabit multiple roles: as participants, they contribute lived experience; as researchers, they are asked to analyse, situate and communicate this knowledge within the epistemic frameworks of science. Such expectations presuppose hermeneutic resources and testimonial recognition that are often unequally distributed precisely because of prior marginalisation. Problems arise when epistemic contributions are judged against standards so demanding that persons with cognitive disabilities can rarely meet them – while, simultaneously, the question of what counts as legitimate knowledge within scientific discourse remains insufficiently interrogated. If reciprocity is defined narrowly, and co-researchers’ contributions are acknowledged as epistemically valid only when they approximate the abstraction or rigour of professional researchers, participatory research risks undermining its own emancipatory aims.

Thus, if participatory research is to contribute meaningfully to epistemic emancipation, it must co-produce knowledge with co-researchers that is both personally significant and intersubjectively accessible – addressing an epistemic public capable of receiving, understanding and critically engaging with it. The emancipatory force of such processes lies precisely in their potential to transform established criteria of legitimacy in scientific knowledge production. At the same time, it remains an ethical imperative to create institutional spaces for these forms of relational knowledge creation and to render their results visible within epistemic publics, rather than obscuring unresolved challenges through euphemistic claims that any form of activity or communication already constitutes research.

The fourth and final part will bring these considerations together by discussing the epistemological and methodological developments required, the forms of epistemic humility that are called for and the structural adjustments necessary to establish durable institutional publics for participatory research.

Conclusion

The perspective developed in this article has shown that the aims of participatory research – emancipation and social change – are closely linked to the pursuit of epistemic justice. Yet achieving these aims depends on the competencies and preconditions of those involved, which in turn brings us back to the long-standing criticisms of conventional social science research outlined at the outset.

This observation highlights an important educational dimension: the skills required for successful participatory research constitute a pedagogical challenge for all participants. Engagement in such processes enables individuals to acquire, generate, share and apply knowledge (Nikolaidis, 2021). At the same time, it requires the creation of new institutional and epistemic spaces for research and dissemination. These new places are essential for developing shared roles and purposes, functioning as ‘third spaces of understanding’ (Hall, 2014: 384), where negotiated and reciprocal relationships can unfold, allowing participants to shape research processes within the fluid dynamics of evolving interactions and goals.

Nevertheless, talking of such spaces also reveal fundamental problems. The development of methods that avoid further stigmatisation or epistemic marginalisation of persons with disabilities remains a pressing concern. If these challenges are not addressed, entrenched assumptions about the ‘reality’ of disability may be reinforced, even when the explicit aim of participatory research is to resist essentialism and to take the concerns of disabled persons seriously (Bang and Vossoughi, 2016). Meeting these challenges requires substantial structural adaptations that are far from easily realisable within existing academic frameworks. ⁷ The prevailing logic of scientific research is not inherently oriented towards participatory principles, and even where supportive structures are created, genuine participation often remains an elusive goal. For individuals with cognitive or severe multiple disabilities, the obstacles to making a meaningful contribution to scholarly knowledge can be extreme. This points to a structural and methodological difficulty but also to a more fundamental epistemological challenge concerning how the knowledge of others is to be understood and integrated.

Participatory disability research thus continues to face a significant gap between ambition and reality. Further development requires less emphasis on reiterating utopian ideals and greater attention to the complexities of practice. As a comparatively young and marginalised field, it faces considerable methodological hurdles and often fails to include those it most seeks to empower (Mietola et al., 2017).

In this context, the importance of epistemic humility must be underlined (Kittay, 2009). Such humility entails careful listening to the expressed needs of others and openness to learning from them. It reminds us that emancipation and participation as research aims can begin on smaller scales: not every partially participatory project should be dismissed as a failure merely because full participation is not achieved at every stage, or because broader social emancipation is not an immediate outcome. Incremental progress and the continuous negotiation of what counts as meaningful participation should be recognised and cultivated.

At the same time, however, a critical caveat is required. While conceptual contributions to participatory research (e.g. Milner and Frawley, 2019; Veck and Hall, 2020) have justifiably critiqued established traditions, participatory researchers themselves remain responsible for articulating their work as research in a scientifically credible manner. Legitimacy cannot rest solely on a departure from conventional paradigms. Participatory research must develop criteria by which its outcomes can be assessed as scholarly contributions. This requires, first, a distinction from other practices such as therapy or even ‘plain’ activism, which may produce valuable effects but are not equivalent to research in the epistemic sense. Second, it presupposes an epistemic orientation towards a public – however defined – that is able to receive, scrutinise and extend the knowledge produced.

Research that does not meet these minimal conditions risks falling short of its own epistemic objectives and, more seriously, risks ethical self-deception if activities of a different nature are prematurely labelled as ‘research’. Precisely because participatory research aspires to epistemic justice, it must also hold itself accountable to standards of epistemic validity. Only in this way can it foster spaces where both aims are realised: the recognition of diverse forms of knowledge and the production of intersubjectively accessible insights.