Ability expectations in collaborative research: Ethical reflections from three empirical studies with disability communities

Abstract

This study critically explores ability expectations in collaborative research with disability communities to highlight ethical consequences and outline an ableism-critical research practice. Ability expectations in research are shaped by an ableist academia that often excludes and/or objectifies marginalized communities most affected by the research in question. Collaborative research based on the understanding that research should be conducted with a community, in contrast, actively seeks social change. In disability research, collaborative approaches have their roots in the disability movement and, while relatively established, also hold the risk of tokenism, reinforcing power asymmetries and oppression. Three qualitative collaborative research projects connected to the field of Disability Studies were conducted in an Austrian context. Each study had a specific focus (de-institutionalization, parenting and ableism) and respective methodology, including the mode and degree of collaboration with community-based research partners. Findings from the ethical reflection of ability expectations in the three research projects are presented clustered around the three following questions: (1) Who is able to make a meaningful contribution based on which resources? (2) Who is able to make decisions regarding research topic and process? (3) Who is able to determine social change and how? The ethical consequences of asking these questions for an ableism-critical research practice in collaborative research include modes of compensation that minimize the reproduction of epistemic dis/ability hierarchies, dis/ability sensitive power sharing in the research process and community-oriented dissemination accessible to an audience with a variety of dis/abilities. Ableism-critical collaborative research becomes possible precisely because we can draw from the concept of ableism for ethically reflecting practices of collaboration. Academic researchers must be able to endure uncertainty and sometimes unresolvable negotiations as well as learn from criticism by community-based research partners whilst avoiding possibly debilitating effects of the ability-expectations posed by academia and communities outside of academia.

Introduction

Collaborative research with research partners from communities outside of academic contexts has – under different names and approaches – gained popularity. Despite specific emphases and contexts of particular approaches such as Participatory Action Research, inclusive research, community-led research, user-involvement or co-production, they share the understanding that research takes place with a community (Busch et al., 2019). Collaborative research in this sense is often, but not always, undertaken with marginalized groups and aims for social change. This intensifies ethical challenges in research such as power imbalances, questions of ownership and who benefits (most) from the research as well as epistemic issues (Banks et al., 2013). How these and other ethical challenges are addressed, depends on the specific research topic and environment, and on the positionalities of the researchers involved. Collaborative research approaches often trouble hegemonic research ethics procedures, including the seeking of approval from (academic) ethics authorities – which can be seen as an opportunity of mutual learning (Walsh et al., 2024). Changes to the conceptualization and regulation of research are necessary to accommodate collaborative approaches. This entails a broad understanding of research ethics and of their goal as ensuring ‘flourishing’ (Banks et al., 2013: 266) rather than a paternalistic focus on preventing or reducing harm to groups perceived as particularly vulnerable (More and Düber, in press; van den Breemer et al., 2024).

In disability research, collaborative approaches have their roots in the disability movement (French and Swain, 1997) and are relatively established yet also hold the risk of tokenism, reinforcing societal power asymmetries and oppression (Kuper et al., 2021). One of the criticisms here is that collaborative research serves as a label rather than a radical reorientation, particularly in the context of an ableist academia (Brown and Leigh, 2020; Dolmage, 2017) in which most acknowledged research takes place. Hegemonic research, including collaborative approaches, produces and reinforces ability expectations (Wolbring et al., 2019) towards the involved, for example, through communicative, methodological, ethical and temporal norms for research. According to Wolbring et al. (2019), ability expectations can have both empowering and disabling dimensions and therefore do not per se constitute ableism. However, when exclusion or oppression is legitimized based on ability expectations that view a specific ability as essential, this has been described as ableism.

In the field of Disability Studies, which remains interconnected to the social movements of disabled people (Goodley, 2013), research led by disabled scholars is central. Disability-led research is however not free from ability expectations and ableist research practice. This is partly due to the general ableism of (academic) research and partly due to a disability hierarchy, meaning that certain types of disability are devalued more than others (Mogendorff, 2023). Ableism is a thriving activist-theoretical concept through which criticism on exclusionary notions of ability and abledness (e.g. in the form of able-bodiedness) as well as diving practices between dis/ability is expressed (Campbell, 2019). While an increasing number of scholars draw from the concept of ableism in their analyses, ableism-critical perspectives to research ethics, particularly in collaborative research, are scarce. Too often, collaborative research with members of disability communities reproduces inequality without attending to issues of privilege and power related to dis/ability (Kubanski and Goeke, 2018). Ableism-critical refers to, for example, an approach, practice or perspective that is critical of ableism. In this study I use the term ableism-critical rather than anti-ableist, which is more commonly used in English language to describe similar approaches, and which I have used myself. If anti-ableist approaches are limited to declarations of ‘being anti’, they are insufficient for criticizing ableism (More, 2024). Referring to the term ableism-critical here is an attempt to bring this nuance to reflections on the complexity of ability expectations in research ethics. Ableism-critical research practice involves a ‘de-ableization of knowledge’ (Mogendorff, 2023: 45) and needs to ethically reflect explicit and implicit ability expectations in collaborative research.

This is – quite obviously due to the choice of place of publication – a research paper by an academic researcher involved with different communities in different roles. As I consider in my ethical reflections, academic structures and strategies of research dissemination, including academic language, are themselves interwoven with ableism in that they produce a dis/ability divide through inaccessibility. The purpose of the present study is to reflect such tensions and contradictions by critically exploring ability expectations in collaborative research with disability communities to highlight ethical consequences and outline an ableism-critical research practice. My ethical reflections are based on insights from three qualitative empirical studies that took/take different approaches to collaborative research with different disability communities.

Ableism, ability expectations and research ethics

Ableism as a concept derived from Disability Studies and the disability movement, where disabled activists have used it for decades to call out notions of normalcy (rather than disability) as the source of their oppression. Scholars such as Campbell (2009), Goodley (2014) and Wolbring (2008) have theorized ableism with different nuances. In short ableism can be defined as a system of oppression based on the hierarchization of abilities and classification processes. At the center of ableist oppression is the construct of the able, active and productive human, which is both idealized and normalized (Davis, 2010). Due to the general presumption of able-bodiedness as the standard and disability as deviation, disabled people are constructed as ‘others’ (Chouinard, 1997). People’s ability to approximate ‘abledness’ (Campbell, 2019: 147) has consequences for their access to, opportunities in and quality of multiple areas of life, including family life, education, employment and health. Ableism can affect anyone, as no one is able to fully reach the ideal and the most possible approximation can only be achieved for a short period in our lives (McRuer, 2010). This means that ableist oppression is not limited to disabled people, but because of the hierarchization of abilities and narrow ability expectations in many areas of life, disabled people are extensively affected by ableism.

Ability expectations that view a specific ability as essential have been used for classification and regulation of access, legitimizing inclusion/exclusion based on people fulfilling/not fulfilling ability expectations. As stated above, ability expectations can have enabling dimensions that contribute to empowerment and are relevant for personal as well as community development, while their disabling dimensions can lead to (e.g. educational) segregation and fewer opportunities (Wolbring et al., 2019). In the context of collaborative research, ability expectations in the field of education are particularly relevant, as educational pathways often serve as access routes to higher or vocational education and employment opportunities. The educational systems in many countries are highly selective and segregating in favour of privileged students and to the disadvantage of disadvantaged or marginalized students, including many disabled students (Gabel and Danforth, 2008). (Disabled) students who access higher education and the few of them who then access (academic) research positions are confronted with the debilitating impacts of academia and its ableism (Brown and Leigh, 2018; Nishida, 2016; Price, 2018).

Ability expectations in research are shaped by academia, and within academia hierarchies exist between different disciplines, for instance in terms of epistemological recognition (Whose research is considered scientific knowledge?) and funding opportunities (Research in which disciplines is funded by the state and/or industry?). Historically, many indicators of quality, requirements in funding and publication, and ethics standards were developed in orientation of a biomedical understanding of science ¹ and, regarding ethics, as international statement against the Nazi medical crimes (the so-called Nuremberg Code from 1946). These evolving standards did however neither adequately represent (particularly qualitative) research in the social sciences nor address its specific potentials and challenges. In research ethics procedures, such perspectives long dominated (Fisher and Anushko, 2008) and sometimes still dominate today. In the social sciences, research ethics were not considered until much later, when researchers in some countries recognized ‘the strong biomedical basis for many of the previous guidelines governing research’ (Fisher and Anushko, 2008: 96) and began to create ethical frameworks specifically for the social sciences.

Today, most academic research societies have developed and published their own ethics statements and most universities have ethics committees that are becoming more aware of collaborative research approaches. In recent years, scholars have increasingly discussed ethical issues of community-based participatory research (e.g. Amauchi et al., 2022; CSJCA and NCCPE, 2022; O’Sullivan et al., 2023; van den Breemer et al., 2024). There seems to be a specific focus on the ethics of participatory research with children and youth (Loveridge et al., 2024; Montreuil et al., 2021; Teixeira et al., 2021), as well as with other groups and communities such as people living in poverty (Tardieu et al., 2023) or affected by substance abuse as well as workers in this field (Morgan et al., 2023). There also exist studies of ethical considerations in culturally diverse contexts (e.g. Eriksen et al., 2021; Heard, 2023). However, there is a shortage of ethical discussions of collaborative research with disabled research partners from communities outside of academic contexts.

All core ethical principles for research in general also apply to collaborative research. However, the assumption about a clear distinction between professional researchers and research participants does not apply to collaborative research in the same way, as research relationships and positions are often blurred. This is why research ethics must be approached differently in collaborative research (Amauchi et al., 2022; CSJCA and NCCPE, 2022; O’Sullivan et al., 2023). Scholars typically agree that ethics in collaborative research are procedural because such research is often unpredictable, making it difficult to follow predetermined rigid ethical guidelines. At the same time, ethical frameworks, for example, community-based participatory research (such as by CSJCA and NCCPE, 2022) acknowledge situated, relational and reflexive ethics (O’Sullivan et al., 2023). In line with its democratic premises, collaborative research requires a dialogical approach to addressing research ethics and sharing power over ethical reflections (Amauchi et al., 2022). As the current research landscape shows, collaborative research is often conducted with communities which have been marginalized in/by or excluded from academic research. Scholars have recognized the need to avoid further exclusion of groups viewed as vulnerable from (collaborative) research (e.g. Gustafson and Brunger, 2014; More and Düber, in press; Teixeira et al., 2021). In such research, the vulnerability of everyone involved, whether academic researchers or researchers based in communities outside of academia, is considered. Yet, the research relationships are not free from power-imbalances, and this must be ethically reflected throughout the research process. Attention to aspects such as engagement with and access to research partners, establishing partnerships and boundaries, community rights, representation and ownership, including dissemination is required (Amauchi et al., 2022; Banks et al., 2013; O’Sullivan et al., 2023; Wilson et al., 2018).

From an ableism-critical perspective, some of the ethical considerations regarding collaborative research imply the importance of addressing (often unacknowledged) ability expectations, for instance regarding specific modes of communication and ability to consent, skills such as reflexivity and sensitivity as well as expertise and research capacities. Amauchi et al. (2022) emphasize that community-based approaches value the skills and knowledge of different agents and note that (academic) researchers ‘need to bring additional skills and commitment to their research and justify their outcomes and impacts’. (Amauchi et al., 2022: 16). This relates to what Banks et al. (2013) state regarding the necessary research competences to conduct ethically reflective collaborative research: ‘The key qualities of a researcher include ethical sensitivity (a capacity to see the ethically salient features of situations) and relational virtues, such as trustworthiness (reliability and not letting others down)’ (Banks et al., 2013: 266). They argue for a balance of ethics that focus the individual as well as a more collective ethics of care approach and ‘an awareness of the potential complexities and conflicts and a willingness and ability amongst research collaborators to reflect together’ (Banks et al., 2013: 274) in the research process. The ability expectation of engaging in reflexivity at a sometimes very abstract level may however exclude some collaborators and must therefore be addressed from an ableism-critical perspective.

Within the CSJCA and NCCPE (2022) ethical guide to community-based participatory research the diversity of abilities and the relevance of this to research partners’ contribution to the process is emphasized:

[the] principle of democratic participation does not entail that certain individuals, groups or numbers of people should participate in decision making in any particular research project, but that people should be enabled and encouraged to contribute according to their skills and interests. (CSJCA and NCCPE, 2022, p. 7).

As noted in the framework, a participatory approach both builds on and may lead to the development of different skills and expertise. However, there seems to be a tendency in collaborative research approaches to direct the development of (research) skills more towards research partners from non-academic contexts while the determination of what are relevant research skills is shaped by academics (Montreuil et al., 2021). This relates to the negotiation of partnerships and power imbalances, including sometimes blurry insider and outsider perspectives, as Wilson et al. (2018: 193) point to: ‘Community research workers do not always have competence, knowledge or experience to fulfil partnership expectations and can be burdened by complexities of working in their own community’. Power imbalances in collaborative research also translate into a fine line between striving for social change and giving false hopes regarding research’s impact to marginalized communities. In the challenge of redistributing power lie sometimes unreflected ability expectations towards research partners and individual and community capacities to contribute to research: ‘The assumption is that there is capacity to perform these tasks within the communities engaged by researchers. However, the reality is that participants’ capacity or levels of expertise vary both between and within communities’. (Wilson et al., 2018: 194). Thus, meeting ethical challenges in collaborative research is often framed as personal competence and set of skills (Amauchi et al., 2022; Banks et al., 2013; Wilson et al., 2018).

The concept of ableism allows for new perspectives on ability expectations not only by but also of academic researchers both from the community they collaborate with in their research and from academia. Kubanski and Goeke (2018) who are situated in – such as the author of the present study – a German-speaking context, view ableism as a beneficial concept to reframe intersectional power relations through participatory research, because people who are marked as less able by society have the possibility to influence and co-create research processes in a role as experts. In turn, academic researchers must give up their expert status to some extent through practices of power sharing (Kubanski and Goeke, 2018). These considerations are elaborated based on the three collaborative research projects introduced hereafter.

Methodology

The three qualitative research projects which provide the empirical material for the present study were all conducted in an Austrian context. They are all connected to the field of Disability Studies and led or co-led by the author of this paper, with study 1 already completed several years ago and studies 2 and 3 forthcoming. The first study’s focus was parenting by people with learning difficulties, ² the second’s focus is de-inistutionalization and independent living and the third study’s focus is a feminist intersectional approach to ableism. Their methodology differs, including the mode and degree of collaboration with community-based research partners (see Table 1). Research ethics were considered comprehensively in all three studies, yet due to institutional structures (the responsible university did not have a general ethics committee at the time) approval from an ethics board could not be sought for the first study (which was a doctoral thesis) but was gained for the second (University of Klagenfurt, Austria, reference nr. 2024-001) and third study (University of Vienna, Austria, reference nr. 01060). For the first study, ethical issues were addressed with and the adequacy of strategies to meet them were confirmed by one of the university’s doctoral committees.

Table 1.

Overview of the underlying empirical studies.

Details	Study 1: Dis/ability, parenting and social work	Study 2: De-institutionalization from the perspective of people with learning difficulties	Study 3: Ableism, the dis/ability binary and beyond
Thematic focus	Parenting by people with learning difficulties	De-institutionalization and independent living	Feminist intersectional approach to ableism
Research period	2017–2020	2021–2025	2023–2027
Types of data material	• Interview data • Social network maps • Internet newsgroup data corpus	• Interview data • Social network maps	• Review data and collected activist sources • Digital storyboards • Discussion group data
Main method/s	• Interpretative phenomenological analysis (Smith et al., 2009) of interviews and network maps • Analysis of newsgroups in orientation of hermeneutic sociology of knowledge (Keller, 2011)	• Analysis of interviews and social network maps with the documentary method (Bohnsack, 2014)	• Storying approach to research (Phillips and Bunda, 2020) • Multiple-level analysis of intersectionality (Winker and Degele, 2011)
Participants	• Mothers and fathers with learning difficulties (n = 10) • Professionals from the field of social work (n = 6)	• Women and men with learning difficulties (n = 11)	• Disabled women feminist activists, advocates and artists who are also research partners (n = 5) • Women or female-read people from research partners’ communities (n = 30)
Approach to collaboration	• Participatory research (Von Unger, 2014)	• Inclusive research (Buchner et al., 2016)/joint research (Schuppener et al., 2020)	• Feminist research collaboration (More, 2023)
Mode of collaboration	• Collaboration with a self-advocacy center throughout research process, began after implementation had started • Working with a so-called reference group (Flieger, 2007), including co-analysing parts of the interview data • Collaboration in dissemination of findings, including presentations and accessible reports, with academic and community focus	• Collaboration with a self-advocacy center and individual co-researchers from the beginning and throughout research process, supported by assistants from the center • Joint determination of research questions, scope and methods, including creation of interview schedules • Data collection primarily by community-based partners • Data analysis primarily conducted by academic partners • Joint dissemination with academic and community focus	• Collaboration with research partners throughout the research process, but no involvement in the initial planning • Research partners are contractors to the project and thus formally work for the project • Data collection partly by community-based partners, partly by academic researchers • Data analysis partly by community-based partners, partly by academic researchers • Joint dissemination with academic and community focus
Research partners	• A self-advocacy center of/for people with learning difficulties • 2 women and 2 men with learning difficulties (reference group) some of whom were also participants	• A self-advocacy center of/for people with learning difficulties • 1 woman and 3 men with learning difficulties who are self-advocates at the self-advocacy center	• Disabled women feminist activists, advocates and artists who are also participants (n = 5)

Interestingly, in the light of the existing research pointing to challenges regarding ethical approval of collaborative research, this was not really an issue for the underlying studies of the present paper. The respective ethic committees made minor remarks (including on what the committee called minimum competences of participants to understand informed consent in study 2), but none of them concerned the collaborative design of the projects. This is very likely connected to the increasing popularity and number of participatory studies noted from a German-speaking context (Kubanski and Goeke, 2018), and ethics reviewers’ awareness of such approaches and their specific ethical challenges.

All participants of studies 1 and 2 gave informed written consent to participate in the respective study and for the publication of the data collected from them. Research partners ³ and the second academic researcher ⁴ of study 2 verbally agreed to have reflections on our collaboration published in this paper. Research partners ⁵ of study 3 submitted written collaboration agreements before the beginning of the project and verbally agreed to have reflections on our collaboration published in this paper. They revised their direct quotes and again gave verbal consent (which was recorded) to the publication of the quotes in this paper.

As positionality and situatedness of knowledge (Haraway, 1988) is central to feminist research, and transparency of roles is highly relevant in the context of collaborative research, it is necessary to clarify my position as a researcher and author of the present paper. As academic researcher, which is my primary role in academic contexts yet not my only role in relation to the research that I do, as I have, for example, been involved in disability advocacy, as well as from a deeply personal space, I consider myself a feminist academic activist (Garland-Thomson, 2002). I aim for allyship with marginalized communities through research and advocacy. Feminist approaches, particularly as articulated in feminist Disability Studies, underpin my overall research framework. As stated by Garland-Thomson (2005: 1557): ‘Feminist disability studies is academic cultural work with a sharp political edge and a vigorous critical punch’. Such research practice also involves an ethics of care, including attending to ability diversity and its implications for knowledge production, fostering accessibility and relationships between academia and activism, slow research and resisting academic productivity (López Radrigán et al., 2025). The terms I use in the present study to differentiate between academic and community researchers or research partners/collaborators are therefore not fixed labels implying that one person or group can only be either/or. Rather the intention is to name the primary situatedness of the involved in a specific research context whilst simultaneously acknowledging that everyone may occupy different roles and positions in relation to the research topic. In this regard, although the following ethical reflections are partly based on insights provided directly by community-based research partners, the findings are reported from an academic researcher’s perspective and should be read as such.

Questions of ability expectations in collaborative research

The findings from the ethical reflection of ability expectations in the three research projects are presented clustered around the three following questions: (1) Who is able to make a meaningful contribution based on which resources? (2) Who is able to make decisions regarding research topic and process? (3) Who is able to determine social change and how? By highlighting the ethical consequences of asking these questions, an ableism-critical research practice is then outlined.

Who is able to make a meaningful contribution based on which resources?

The ethics of who is (not) able to meaningfully contribute ⁶ to the research process and based on which resources, plays an important role in collaborative research. In study 1, there was an informal collaboration with a self-advocacy center throughout the research process, especially with one man who had been an active advocate for the rights of parents with learning difficulties. Later in the research, members of a so-called reference group (Flieger, 2007) were recruited for a more formalized collaboration, including the analysis of parts of the interviews taken with professionals. The work with three of the co-researchers in the group continued beyond the analysis, for example for data dissemination. Two of them wrote a foreword to the published study and assisted me with a plain language summary (More, 2021a), and two were later involved in an easy-read publication (More, 2025). In addition, the cooperation with one self-advocate/co-researcher continued in various advocacy settings.

Here, the question of who was able to make a meaningful contribution was connected to the resource of being a self-advocate, as there was more and continuous collaboration with the co-researchers who work at the self-advocacy center. Partially this was also connected to individual resources, such as the decade-long advocacy for parents with learning difficulties of one co-researcher and – at the time of the collaboration – no immediate care responsibilities. This was connected to age (the people most involved no longer cared for very young children) as well as of gender (it seemed easier for the men to participate in group meetings than for the women), which requires ethical reflection on inclusion and exclusion and the diversity of research partners within a marginalized group. I tried to work against a gender-imbalance by scheduling meetings based on when the women were available. Also, an ethics of care as proposed by Banks et al. (2013) for collaborative research involves a focus on the responsibilities attached to particular (research) relationships and resources such as organizing childcare during group meetings that create equal access. Yet there is no one-size-fits-all solution because not every child is ready and able to stay with just anyone, for example, due to disability (which was the case in our group).

Another question of who is able to make meaningful contribution concerns (financial) compensation. Especially in research co-produced with people with learning difficulties compensation is considered a good practice principle (Garratt et al., 2022). Depending on university and/or funder requirements this may be a more or less complicated matter, but for the three projects we found feasible ways for the specific situation of each collaboration. In study 2, we have the privilege that the community-based research partners can work on the project as part of their employment with a self-advocacy center. This means that as an inclusive research team we have access to both university resources and resources from the center (e.g. office supplies, meeting rooms and assistance personnel). The decision to devote parts of our respective work hours to the joint research project has had positive impacts on the stability of our team and the commitment to the research process. To express the value of the research partners from the self-advocacy center as well as their time taken from other activities to accommodate the research, they are additionally compensated for written contributions (e.g. expert statements) that they bring to the process.

In study 3, the research partners are contractors who work for the project in that they formally contribute a specific product or task to the research and receive a fee. This mode of compensation was – due to structural restrictions – the only option to compensate the collaborators and it is not free from ethical tensions. For example, as academic researcher I wrote the proposal, received the funding, lead the project and benefit most, because the research advances my academic career. The collaborators are not full employees but contractors, which is a more flexible form of paid work with fewer legal rights and no entitlement to, for example, annual leave or sick leave. This upholds a power asymmetry, including a dis/ability hierarchy (privileging status or voice of non/disabled academic researchers over that of disabled research partners), whilst making this collaboration possible by providing the necessary flexibility. Collaborators can regularly decide whether they want to proceed with the project, while regular employment would demand a different form of commitment, has narrower legal criteria (e.g. regarding place of residence) and is more directly affected by rigid academic structures.

Able to make a meaningful contribution are therefore people who are compensated for their work as research partners and can devote their time and effort to the respective project. In studies 1 and 2 commitment was easily accomplished with self-advocates who viewed the research as directly related to their advocacy work. In study 1, it was more challenging to create commitment with the two co-researchers who were not self-advocates at the center. In one case this was a question of access (organizing childcare for a disabled child) and in the other case this was an ethically even more sensitive matter, as the respective co-researcher was worried that her involvement in the research (and expressing criticism towards the child protection system) was posing a threat to her child being removed from her care by authorities. This is a present fear of many parents with learning difficulties (More, 2022) and the mother/co-researcher chose not to proceed with the research. Commitment here depended on being able to contribute without the fear to compromise one’s personal life and this experience highlights that members of marginalized groups sometimes are not able to contribute to research because their personal risk outweighs the benefit.

In study 3 establishing commitment is a continuously challenging process from my perspective as academic researcher. As Gustafson and Brunger (2014: 1003–1004) state, ‘Despite a common commitment to collaboration and empowerment [. . .] different communities can bring to a project distinctly different assumptions, knowledge of the research process, expectations for engagement and access to resources’. One reason for this being a challenge in study 3 is that the collaborators have a high workload in their daily lives and within our group the resources to commit to the research are unequally distributed. It is an act of balance to, as the project leader responsible for the research progress, establish collaborator commitment in an ethically sensitive manner. Some research partners must, for example, frequently be reminded of meetings and the tasks that they agreed to complete in-between meetings and we repeatedly had to adjust the research schedule due to missed (collaboratively set) deadlines. Overall, the depth of and insights from our collaboration outweigh the difficulties, but in the context of academic structures and timeframes, this can be challenging. One of the collaborators criticized the research process at one point, when I asked for a meeting to go over the tasks that we had agreed on:

I do not have time or capacity to meet. I feel that there are too much questions per resource and many of them don’t even fit. The academic format of research with very strict parameters and formats is in itself very ableist. Community based and directed research is flexible and allows for more diverse reporting. My workload is demanding and consistently so and I don’t feel like I can dedicate the time and effort required to fulfill expectations as I will always have to prioritize my organization’s tasks and my own business. (Email communication, 17.11.2024).

We then managed to schedule a meeting and took up this criticism, which I value as honest and helpful feedback. The accessibility of our working mode and, for example, documents that are the basis for parts of our work is also a continuous issue that I try to meet by always providing various ways of working modes (e.g. written, voice recordings, direct meetings). What this communication made explicit to me is that the collaboration is demanding on the research partners and that academic ability expectations are – despite best efforts to collectively determine specific tasks and working modes – often too rigid for an ableism-critical research practice.

Who is able to make decisions on the research topic and process?

Another ethical question is who is able to make decisions on what research is about and how it is conducted. The literature on collaborative research frequently addresses knowledge (e.g. regarding research methods) as the basis for informed decision making (Wilson et al., 2018). The more information and knowledge community-based research partners have, the more they are able to assert power and make decisions. In study 1, research topic, design and methods were decided by the academic researcher and for the analysis of interviews together with the reference group, an adapted, more accessible version of the research method was introduced to the co-researchers in a workshop. Their ability to make decisions was therefore limited while they acquired some methodical skills to actively participate in the analysis and co-produce the interpretation of interview data. In retrospective, it would probably have been possible even for a doctoral study and its many structural restrictions to facilitate more decision-making power for the co-researchers in the research process, for example, by establishing the reference group earlier on in the process and involving the co-researchers in some of the planning and data collection. This is one of the reasons why I framed study 1 as participatory research and have reflected on the level of co-researchers’ involvement by drawing from Arnstein’s (1969) Ladder Of Citizen Participation and its further development by others elsewhere (More, 2021b). In addition, the adaptation of research methods and methodology needs to be ethically reflected as act of balance between fostering accessibility and reproducing ableism in that community-based researchers are potentially underestimated in their ability to explore, for example, more complex theoretical foundations of research methods due to dis/ability hierarchies.

As study 2 was, in contrast to study 1, a joint project from the beginning, the ability of community-based researchers to make informed decisions was not narrowed down by the research design. The topic of de-institutionalization was determined in informal talks in orientation of the focus of a local conference, that the academic researchers who lead study 2 organized and the self-advocates gave a presentation at. After this informal exchange we met the first time as a group to talk about a potential research project together and discuss what aspects of de-institutionalization are of relevance to the self-advocates. Early in the research process, we discussed research ethics and the importance of seeking approval of the university’s ethics committee. We collaboratively discussed an ethics protocol, that the academic researchers then wrote up and submitted. The self-advocates contributed to this writing process, for example, by producing a list of contact points for participants who need (psychological) support after an interview. The next four meetings then were used to introduce different research methods and this knowledge base then used to decide on research methods. The community-based researchers had a strong tendency towards interviews from the beginning and made the final decision on choosing this form of data collection along with the creation of social network maps. They drafted the first version of our interview schedule, which the group then revised. All self-advocates involved decided to conduct interviews with support of an academic researchers or their assistants, who then accompanied them to their interviews but kept a low profile and had more of a facilitating function, for example, making sure no one else came into the room. In study 2, being able to make informed decisions did not mean that every researcher was involved in every step, one of the academic researchers (me) decided for instance to not conduct interviews and all four community-based researchers decided that the academic researchers should conduct the in-depth overall analysis and they only wanted to be involved in regular group analysis sessions, in which emerging findings were discussed and they gave feedback to the evolving interpretation. Currently, the self-advocates are exploring modes of dissemination for our findings.

Dissemination of (emerging) research findings is an ongoing ethical challenge in study 3 in the context of power relations and who is able to make decisions. Early on in the research process we made the decision as a group that individual collaborators should choose from occasion to occasion whether they want to be part of a specific project activity such as a conference presentation or writing a paper. The idea was to create community-oriented opportunities and modes of dissemination together throughout the research process, while academic dissemination has so far mostly been initiated by the academic researcher. For one of the first occasions, giving a video presentation for an academic conference was controversially discussed. One collaborator stated:

It sounds really interesting. I am just not sure I can (or want to) pay for my participation. Ironically enough, part of ableism has to do with using disabled stories and acting as if they’re doing us a favor for letting us use our lives, our bodies, our survival, etc. (Email communication, 03.04.2024)

Another collaborator responded:

I agree of course. Our voices are often used to check a box. And I totally agree that is what happens when our voices are used to fill someone else’s agenda. In this case, it would be OUR decision, OUR Choice to share (or not - I am ok with that too). I personally feel the need and the responsibility to SCREAM - to make my voice heard as I feel some don’t even have that luxury. And I want to use my Voice HOW and WHERE I choose. For this reason, I think it would be a good opportunity to share, so my vote is to participate. (Email communication, 11.04.2024)

In the end, four of the five collaborators decided to be part of the conference presentation (although one later had to step back) while one did not see a value in this for her personally and decided not to be a part of this particular presentation. On another occasion I asked who wanted to co-author an academic paper about the findings from the first stage of our research on ableism, and all four collaborators involved at the time decided that they wanted to be co-authors and write the paper together. However, as the lead researcher and depending on available (e.g. temporal) resources I drafted the final paper based on writings and transcripts of the other co-authors, which we then revised and adjusted together. We are currently planning community-focussed disseminations strategies including social media sharing and in-person activities with disability communities.

Who is able to determine social change and how?

As collaborative research strives for social change (Banks et al., 2013) ethical reflections must consider who is able to determine social change and how, especially as the specifics of social change often remain unclear, partly due to the process- (rather than outcome-) oriented nature of collaborative research (Busch et al., 2019). From a consistently community-focussed perspective, only the community in question is able to determine social change. Therefore, the community-based research partners should define what social change means from a community perspective and bring this expertise to the research process. However, the community perspective is then often translated into academic language, which is an ethically sensitive matter if tokenism is to be avoided. A strategy to counter this is to disseminate research findings together with community-based research partners and seek feedback on their relevance from the broader community. Ideally the relevance of research to a community is established from the very beginning, for example by producing research topic and questions collaboratively to ensure that a specific study has value for social change. Thus, the determination of what constitutes social change in relation to a collaborative research project cannot be an add-on late in the process.

The close cooperation with community-based researchers from the self-advocacy (studies 1 and 2) and from other disability rights and advocacy contexts (study 3) at either every stage or at least at various stages of the research process, ensured that their determination of social change was/is represented. However, as study 1 was completed several years ago I must acknowledge in line with Busch et al. (2019) that the social change aimed for by conducting the research truly is process-oriented in that it cannot be easily measured or evaluated. What has happened since is increased networking and visibility of the situation of parents with learning difficulties in Austria, largely thanks to self-advocacy and professional initiatives, which I have contributed to with research findings as well as through advocacy and policy recommendations. I continue to collaborate with self-advocates and practitioners invested in the field of parenting to stay informed about social change and contribute to it where I can.

In studies 2 and 3 determining social change is a work in progress within the research process itself and particularly in study 3 this has been a returning discussion point with the collaborators in relation to ableism in academia and research, for example regarding the credibility and voice of disabled people:

And also, you know, talking about credibility. It is so important for the nondisabled world to realize that our experiences are credible, that what we have to share is valid, that we don’t have to be validated by some PhD Disability Studies academia. We’re grateful for academia. It helps us to move forward in some directions, but it’s nothing more powerful than learning directly from us. (Group meeting transcript, 22.07.2025).

Another collaborator, who has a somewhat dual role as she is also pursuing a PhD, talked about how she is sometimes torn by contributing to an ableist academia but at the same time she viewed Disability Studies and its research principles as countering ableism:

Disability Studies as I encountered it and experienced it is a counter movement that is about the knowledge production from scholars with disabilities. [. . .] I am in favour of introducing the term ableism and academic ableism as an analytical terminology because it’s also a radical concept. [. . .] We should talk about ableism in academia and try to make our work accessible in easy language also outside of academia. I would be really happy if we would succeed in that because it would benefit so many other communities than just the scientific community and landing in some kind of bookshelves. (Group meeting transcript, 17.02.2025).

As represented in the quote above, collaborators in study 3 continuously emphasize the relevance of sharing our findings beyond academia. Some of them also see the potential of our collaborative research project to counter ableism:

We know that there is a lack of community-based research or research that is actually coming about written by those impacted and so this very process that we are participating in right now, even though we’re working within the system, is working to change it as well. What we are doing here together, this collective action as being part of that process and we can also use it to highlight the importance of having community-based research and of it being elevated to the same status alongside academic research and the process of us all being people with lived experience of disability leading this work, participating in this work, contributing to this work, I think is working to that end of changing those norms of academia and hopefully working to opening it more. Every little effort and bit counts. And I think that in order to achieve change that we both have to work within the existing systems, the very ones that we’re trying to change, and we work outside of it as well like no one method ever works, it takes diverse processes to bring about the change that we want. (Group meeting transcript, 17.02.2025).

This perspective on change from within and from the outside resonates with the ethical challenge of community rights and ownership and insider/outsider perspectives mentioned by Wilson et al. (2018) and Banks et al. (2013). Especially in study 3, the historical oppression of disabled people through research (French and Swain, 1997) is very present and frequently discussed, including the paradox of our collaborative research project both contributing to an ableist academia and its potential ableism-critical research practice. For this form of social change to be possible, it is – in addition to resources and power redistribution – necessary that academic researchers bring knowledge of the community they collaborate with as well as certain abilities to conduct collaborative research. Hence, academic research partners must fulfil ability expectations on behalf of both the community they do research with and of academia. This includes the ability to commit to social change beyond their immediate (academic) work context, which may itself be debilitating, especially for researchers in dual roles such as dis/abled scholar-activists (Runswick-Cole et al., 2022) engaging in collaborative research.

In study 1 it was sometimes difficult for me as academic researcher to meet the ability expectations of the reference group, as one of the co-researchers in particular had high hopes that the research would directly affect the support services available to parents with learning difficulties. One of his hopes was the nationwide establishment of counselling and information centers for parents with learning difficulties as longtime outcome of the research (More, 2021b). This was beyond my reach, and it is important to be transparent about the abilities of academic researchers and the limited direct benefits of research projects to the political goals of the community.

Conclusion: an ableism-critical research practice in collaborative research

In line with the literature on research ethics in, for example, community-based participatory research, addressing and reacting to ability expectations must remain a process specific to each study and community involved. There are however some ethical consequences of the reflections presented in this study for an ableism-critical research practice that can be applied to most collaborative studies with different disability communities. From the question of who is able to make a meaningful contribution based on which resources, I conclude that compensation for community-based partners alone is not enough to criticize and counter ableism in academia and research. The ethical consequence here is that the specific mode of compensation (including type of contractual agreement) must be the most appropriate one for a study and individual community-based researchers. This affects amongst other things the ability to dedicate time and effort to the research (commitment) as well as the ability to continuously evaluate and easily end the collaboration for both sides (self-determination). Ultimately, ableism-critical research practice requires modes of compensation that minimize the reproduction of epistemic dis/ability hierarchies. This directly relates to the ethical consequences of who is able to make decisions regarding research topic and process. The reflections above show that different forms of collaboration enable different forms and levels of participation (Arnstein, 1969). In the existing literature, there is a focus on method training and skills as criteria for the ability to make informed decisions in the research process (Montreuil et al., 2021). While this is perceived as key to promoting community-based researchers’ participation, it also transports often unreflected expectations of in/ability and a possible lack of research expertise. An overt emphasis on training or oversimplifying theory or methodology to it make more accessible, especially combined with a dis/ability hierarchy, may reproduce ableism in collaborative research. The ethical consequence of this dilemma is an enhanced need for dis/ability sensitive power sharing in the research process and taking into account who is able to do what without essentializing (including but not limited to disability-related) needs as inability, as for example, suggested by the CSJCA and NCCPE (2022) ethical guide to community-based participatory research. Regarding reflections on who is able to determine social change and how in collaborative research, an ableism-critical research practice requires for academic researchers to have thorough knowledge about the community they collaborate with as well as the ability to engage comprehensively with their positions and demands for social change before the research process formally begins. Another ethical consequence of reflecting on who determines social change is community-oriented dissemination in formats accessible to an audience with a variety of dis/abilities and seeking feedback from the broader (e.g. disability) community.

A feministic ethics of care in research, including slow research practices (López Radrigán et al., 2025), is valuable to countering academic ableism/ableism in academia. At the same time, slow research is not always realizable. Communities have expectations of academic researchers and academic researchers have expectations of their community-based research partners, irrespective of how collaborative a research process may be. It is therefore important to be transparent regarding which ability expectations in collaborative research are negotiable (e.g. the ability to participate in specific activities) and which are not (e.g. the ability to agree on certain ethical standards). What constitutes an ability in such considerations needs itself critical reflection. Community-based research partners’ ability to make an informed decision on whether to be part of a collaborative research process for instance should, from an ableism-critical perspective, not be conflated with paternalistic notions of vulnerability (Gustafson and Brunger, 2014; More and Düber, in press; van den Breemer et al., 2024). In contrast, ability should be conceptualized more broadly, considering resources and strategies on how to reach (intersectionally) marginalized people within the respective community to avoid collaborating with the most privileged community members only. The ethical consequences of ability expectations in collaborative research involve continuously and collectively identifying which expectations are ableist in the sense that they exclude or objectify members of the community most affected by the research. Ableism-critical collaborative research becomes possible precisely because we can draw from the concept of ableism for ethically reflecting practices of collaboration. Recently I was asked in an academic setting how to deal with the ethical dilemmas inherent to collaborative research with marginalized communities and my answer echoed the sentiments of the present paper: Academic researchers must be able to endure uncertainty and sometimes unresolvable negotiations as well as continuously learn from honest criticism by community-based research partners whilst avoiding possibly debilitating effects of the ability-expectations posed by academia and communities outside of academia.

Supplemental Material

sj-docx-1-rea-10.1177_17470161251359788 – Supplemental material for Ability expectations in collaborative research: Ethical reflections from three empirical studies with disability communities

Supplemental material, sj-docx-1-rea-10.1177_17470161251359788 for Ability expectations in collaborative research: Ethical reflections from three empirical studies with disability communities by Rahel More in Research Ethics