Insider research in media accessibilityAbstract
Reflections on insider research, user-led research, and lived experience research, as well as the question of positionality, have long been part of the scholarly conversation in various fields, such as Anthropology and Disability Studies. The present study provides a map of insider research in media accessibility through a literature review and discusses the results of 11 semi-structured interviews with insider researchers working on (media) accessibility and neighbouring fields. Their reflections on positionality in insider research, the benefits and challenges of this approach, their practices in the insider-outsider continuum, and the (in)accessible research processes which they encounter are presented. Researchers reflect on positionality in a nuanced manner, highlighting topics such as visibility and self-reflection, but also stigma and performativity. Experiential closeness to the topic being researched, heightened empathy, and legitimation of insider researchers’ and participants’ knowledge are highlighted mostly as positives elements, granted that researchers are offered psychological support. For most of the researchers, the risks (emotional impact, unclear role of the researcher, if they are well acquainted with the participants, etc.) can be tackled or resolved (through epistemological reflection, through collaboration, through psychological support, etc.) and the general argument is that the benefits of insider research outweigh the disadvantages. Through the researchers’ experience, we argue for greater agency among insiders in the research of media accessibility.
Keywords
insider research; media accessibility; positionality; agency; disability studies
1. Introduction
Reflections on insider research, user-led research, and lived experience research, as well as the question of positionality, have long been part of the scholarly conversation in various fields, such as Anthropology (Müller, 2015) and Disability Studies (Mohler & Rudman, 2022). Insider researchers have made extremely valuable contributions to the field of media accessibility (MA), for instance recounting ocularcentric approaches to access (Chottin & Thompson, 2021), challenging standard practices in audio description (Cavallo, 2015), introducing integral captions and subtitles (Butler, 2018), and coining concepts such as “deaf gain” (Bauman & Murray, 2013) and “blindness gain” (Chottin & Thompson, 2021), just to name a few. Accessibility consists of the provision of equal access to physical and digital environments, offering safe, healthy places and resources adapted to the diversity of people likely to use them (Folcher & Lompré, 2012, p. 89-90). The field of MA concerns “access to media products, services, and environments for all persons who cannot, or cannot completely, access them in their original form” (Greco, 2018, p. 211) and focuses mostly on services such as descriptive subtitles, audio description, sign language interpreting and translation (Tamayo, 2022), easy-to-understand materials, etc. Authors like Greco (2018) identify a shift in MA from a maker-centred to a user-centred approach. According to the user-centred approach, users “bear knowledge that is fundamental for the investigation of access issues and the design of accessibility solutions” (Greco & Romero-Fresco, 2023, p. 3). This approach has mostly materialised in the form of reception studies applying social research methods (Arias-Badia & Matamala, 2020; Di Giovanni & Gambier, 2018; Szarkowska et al., 2013) and psychophysiological instruments (cf. Hermosa-Ramírez, 2022; Orero et al., 2018) to measure, among others, users’ comprehension, enjoyment, presence, and cognitive load when using access services.
Parallelly, examples of accessibility users’ active involvement in the creative industries “whereby users are not merely passive recipients of, but active agents in, the process of production of accessible audiovisual media” (Dangerfield, in Greco, 2018, p. 219) are also flourishing. This involvement is both in terms of initiatives such as visual activism, where artists with disabilities use visual arts to claim spaces in the public sphere saying “‘look at me’, rather than ‘don’t stare’” (Garland-Thomson, 2009, p. 193), or in the production of access services specifically as accessibility coordinators (Romero-Fresco, forthcoming) or accessibility consultants, sign language interpreters, audio description voice talents, etc. Nonetheless, the question of user-led research, lived experience, and insider research remains largely unexplored in MA.
For the purposes of this study, we use user-led, lived experience and insider research almost synonymously. User-led research is deployed here to be distinguished from the more frequent “user-centred” research in MA. The lived experience researcher role “requires the researcher to draw on their lived experiences in the research they conduct and through which they interpret data, working in professional and academic contexts” (Gupta et al., 2023, p. 3), and insider researchers “share common characteristics, such as impairment status, race and sexual orientation, with the marginal group they are studying” (Chhabra, 2020, p. 307). The latter terminology will be deployed consistently throughout this article.
The focus of this study is to interrogate the key role of insider researchers, lived experience researchers, and user-led researchers, and their stances on this approach in the context of (media) accessibility: its benefits and risks, how they reflect on their positionality and positionality statements, and on their experiences as the “researched”, as well as other topics, such as their views on MA. This article first presents a literature review to map existing studies led by insider researchers on the topic of accessibility. It then introduces the methodology of the current study. The presentation and discussion of the results follows, and the main conclusions of the study are introduced last.
2. Literature review
Positionality refers to a researchers’ worldview (their ontological and epistemological assumptions, as well as those about human agency) and the position they adopt in tackling their research and its social and political context, most commonly regarding the subject under investigation, the research participants, and the research context and process (Darwin Holmes, 2020). In this regard, the researcher may be a member of the group or collective they are researching (Merton, 1972), or they share the lived experiences of this group. Of course, the insider-outsider dichotomy has generated great debate in different disciplines, and some researchers have argued that the insider-outsider positionality might be too simplistic in its associated binaries (privileged/oppressed, us/them, included/excluded, insider/outsider) (Chhabra, 2020).
Positionality and insider research are two key topics with a longstanding tradition in Disability Studies. This is because “scholars in disability studies believe strongly that the voice of individuals with disabilities is a necessity in the production of research and scholarly work and is central to the epistemology of disability” (Ferguson & Nusbaum, 2012, p. 78). Within the five core concepts of Disability Studies identified by Ferguson and Nusbaum (1. The study of disability must be social, 2. The study of disability must be foundational, 3. The study of disability must be interdisciplinary, 4. The study of disability must be participatory, 5. The study of disability must be values-based), number four proposes that this call for participation concerns who is entitled to ask the questions as well, particularly given the underrepresentation of people with disabilities in higher education institutions (Ferguson & Nusbaum, 2012, p. 74).
Bringing these topics to Translation Studies, while positionality has been the subject of some research in Feminist Translation Studies (Burkhard & Park, 2024; Ergun, 2021), and the topic of experiential knowledge has been discussed in the scope of the work of translators and interpreters (Susam-Saraeva, 2020), these notions have been less central to Accessibility Studies and MA. Some recent examples of positionality statements are Dangerfield et al. (2024), and Tamayo (2024), as well as reflections on the shared space among disabled and non-disabled filmmakers in access coordination (Romero-Fresco, forthcoming). We start from the premise that MA studies are and have traditionally been led by researchers without disabilities1. Within this context, our first objective was to map existing insider research in MA in English, French, and Spanish. The following combination of keywords was searched on the academic databases Dialnet, HAL, MLA International Bibliography, Scopus, and Web of Science:
(Accessibility OR “media accessibility” OR “universal accessibility” OR “universal design”) AND (autoethnography OR self-representation OR insider research OR user-led research OR Deaf researcher OR blind researcher)
(Accesibilidad OR “accesibilidad universal” OR “accesibilidad universal” OR “diseño universal”) AND (autoetnografía OR autorrepresentación OR investiga* insider OR investigad* sord* OR investigad* cieg*)
(Accessibilité OR “accessibilité audiovisuelle” OR “accessibilité des médias” OR “accessibilité universelle” OR “design universel”) AND (autoethnographie OR autoreprésentation OR recherche insider OR chercheu* insider OR recherche menée par les usagers OR chercheu* sourd* OR chercheu* aveugle)
The keyword search yielded the following results to be screened: 11 for HAL, 3 for MLA, 18 for Scopus, and 347 for Web of Science. The following exclusion criteria were applied:
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the focus is on physical accessibility, transportation accessibility, etc., instead of media, sensory, and communication accessibility;
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accessibility definitions differ from the one used here, i.e. accessibility to economic resources and healthcare;
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user-centred studies are presented where participants act exclusively as respondents or interviewees;
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publications cannot be accessed from the authors’ institutions;
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publications are in other languages than English, French, or Spanish;
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conference papers not published as proceedings.
Most of the retrieved publications are unrelated to MA, or they refer to user-centred, but not user-led studies. Healthcare and transportation accessibility from an insider research approach was another frequent topic excluded for the purposes of this article. Ultimately, the review was narrowed down to 19 studies (all in English), listed in Table 1.
For a brief overview, the yielded publications were recent, mostly from the 2020s, and many of them concentrated on the proceedings from the Experience Reports section from the ASSETS conference. Academic journal publications were the second most frequent publication format. In terms of methodological approaches, autoethnography was the most widely used method of enquiry.
In terms of the contents and results of the publications, four categories could be established. First, one of their main aims was to provide recommendations on how to make different aspects of life, and most frequently academic work, more accessible, i.e. in-person (P2) and online academic conferences (P5), graduate school (P15), word processing editors (P4), qualitative data analysis tools (P9 & P16), audio-verbal interviews and think-aloud protocols (P11), virtual work (P14), and real-time transcriptions for interviews (P19). Second, the publications provided first-person accounts of the use and possible improvements of assistive technologies, for instance in travel contexts (P6) and daily life (P8). This is mostly in the field of human-computer interaction. Third, some authors gave advice on how to conduct insider or first-person research (P6, P15, P18). Finally, and perhaps more importantly for the purposes of this study, some publications championed collaboration between accessibility and other fields such as disability studies (P12) and feminist disability studies and care (P7). In this regard, the participant description in the next section precisely underlines that insider researchers working on (media) accessibility do so from a (Critical) Disability Studies perspective.
Since the literature review did not yield publications focused on insider research on MA specifically, this is expanded in the results section to include the publications by the participants in the study.
3. Methodology
The present study deploys 11 semi-structured online interviews, lasting approximately 60 minutes each. The interviews were structured around three main topics: the researchers’ perspectives on user-led, insider, and lived-experience research; their own personal practices (in the social sciences and humanities), and their experience with academic publishing accessibility. The script from the semi-structured interviews can be found in the “Annex”.
A purposive sampling strategy was applied for the study, intended to include researchers from a diversity of geographical locations, level of seniority in academia, and gender. The participants are indeed at several stages of their academic career, from PhD candidates to emeritus professors and retired researchers. However, the sample mostly includes accessibility-adjacent researchers in European (8), North American (2), and one Northern African institution. Table 2 presents the participating researchers’ names, their institutions and a summary of their research interests and academic work.
After careful ethical consideration and with the researchers’ explicit consent, we chose to include the names of the participating researchers because, during the interviews, the idea of anonymity was challenged time and time again, in line with some feminist works: “They prefer to disclose their identities so that their authorship and ownership of their own words can be maintained, and their names can contribute to a powerful calling for their groups and communities to work on social change and eliminate social injustice” (Wang et al., 2024, p. 9). In order to avoid any potential harm, we sent participants the quotations that would be attributed to them so that they could modify them if needed. Ethical approval was obtained from the Ethical Committee at the Université du Québec à Montréal.
Interviews were transcribed verbatim and, to analyse the data, reflexive thematic analysis (Braun & Clarke, 2006), consisting of a search across the interviews to find repeated patterns of meaning, was utilised. The open coding was performed on Atlas.ti. Reflexive thematic analysis is particularly fruitful in the study of people’s experiences, views and perceptions, and also to understand the social processes and factors that underpin a specific phenomenon (Clarke & Braun, 2017)—which are all key elements in the present study.
The main thematic categories that were found throughout the analysis are gathered into six main sections: 1) positionality as insider researchers: critical, on a case-to-case basis, and consistent positionality; researchers’ own practices regarding positionality statements (4.1), and recommendations for non-disabled researchers regarding positionality statements (4.1); 2) insider research advantages: legitimation of insider researchers’ and participants’ knowledge, experiential proximity, heightened empathy and innovation in terms of research topic selection and discovery (4.2.1); 3) insider research risks: among others, the emotional impact of insider research, and epistemological criticism, complexities in the external perception of insider research, and stigmatisation (4.2); 4) outlooks on participating in other researchers’ studies (4.3); 5) critical stances on accessibility (4.4), and 6) accessibility experiences in research publishing (4.5).
4. Results and discussion
The results and their discussion are presented in the following subsections. Topics around insider research positionality and positionality statements are presented first, followed by a discussion on the benefits and risks of insider research in accessibility and MA. A reflection on participating in others’ research follows. Then, a critical vision of MA informed by lived experience is presented. The final subsection is devoted to the inaccessible aspects of academic publishing.
4.1 Positionality as an insider researcher
In terms of defining their research as insider research, the researchers were consistent in positioning themselves in a nuanced manner. Regarding the themes identified in this category, we may organise the positionings in three groups: critical positionality (within which we place the approaches put forward by Bruce, Sanmiquel Molinero, and Verine), positionality on a case-to-case basis (Kleege, González-Perea, Devos, and Maestres), and explicit and consistent positionality acknowledgements (Figiel and Emara). This subsection then delves into the researchers’ practices regarding positionality statements (second theme) and concludes with the third theme: the researchers’ outlook on MA non-disabled researchers’ positionality statements.
Cynthia Bruce does not tend to talk about her research as insider research, but does consider herself a disabled researcher, a former disabled student, and she does research with disabled scholars and students within a post-structural framework: “I talk about it as centering lived experience. Critical Disability Studies is where my work sits, and that fundamentally as a discipline and a methodology is about centering disabled voices. So I think that’s why I just don’t talk about it that way”.
Laura Sanmiquel Molinero highlights that “you cannot take for granted that, just because you and your participant are both legally categorised as disabled, you are both insiders of the same subject”. Instead, this is something that is constructed and deconstructed throughout a research project. Additionally, this positioning is something that is not always defined by the researchers themselves, as she reports that, at times, she has been positioned by others as an outsider researcher. Bertrand Verine reflects on his experience both as a researcher on sensoriality and as an activist with a leading role in a blind people organisation. He considers himself an outsider in the current academic world, which is “too visual and too virtual”.
Georgina Kleege is interested in the representation and the lived experience of blindness through a humanist lens, not through social science:
One thing that was important to me as a writer of memoirs is to put my own experience in dialogue with other people who are blind and visually impaired, and sometimes that has to do with living people. Sometimes it has to do with the writing of people, and so on, and so forth, and to observe how people represent the experience differently than it is usually represented in fiction or film.
Lourdes González-Perea does not consistently position her research as insider or refers to her lived experience in her academic publications, although she did in her doctoral thesis. In her industry projects and public speaking events, she does highlight the insider aspect more.
Finally, Piet Devos recalls his experience as a student taking a course on visual culture. He had to deliver an essay and chose to base it on his own experience of visual culture. After that, he discovered Disability Studies and the philosophical and critical possibilities that the discipline has to offer and, for instance, chose to deliberately do research on his own experiences of contemporary dance (Devos, 2018). At the beginning of his career, however, it was difficult to find supervisors who were interested in these topics. Brígida Maestres’ approach is similar, in the sense that her research is situated in her own experience.
Regarding consistent positionality, Wojciech Figiel does position himself at the beginning of every publication: “This is something I have a stake in because I am myself a visually impaired person and I come from the Central and Eastern European region”. He acknowledges that this does not mean that these experiences are not applicable to others in other regions, but it is something that he always acknowledges.
Ibrahim Emara believes that it is important to state his visual impairment because his work centres around the experience of people with visual disabilities such as bloggers, social media users, etc. and, in his work, he argues:
That it’s important to hear the voices of people with visual impairment [because] they have the authority, I use this word, to talk about their issues. They can talk about their lived experiences, it’s better to hear from them because they know everything about themselves instead of asking another person to tell us what it’s like to be a visually impaired person.
This also applies to his own research. For instance, he has published on the inaccessibility of qualitative data analysis tools (Emara, 2023), informed by his own experience as a journalism researcher. Additionally, he argues that both the lived experience approach and the link between media and disability do not receive much attention in his region of the world, Egypt, where other political topics take the spotlight.
In terms of using positionality statements, Cynthia Bruce always self-identifies as a blind scholar and a lot of her work also centres her own experience on educational contexts. She usually introduces her positionality at the very beginning and in the methodology sections of her publications.
For some of the participants, positioning themselves is a means towards visibility. For Naiara Larrakoetxea, for instance, it depends on the type of research at hand, but for visibility purposes she does include that she is a Deaf woman researcher who uses sign language. Georgina Kleege takes a similar approach: “In some sense, academic research where researchers claim this identity kind of chips away at that stigma. It’s saying ‘this is a valuable part of my identity, and it also speaks to my expertise in that subject”. It’s a credential. In her own practices, her positionality depends on the context of the work. In publications about access, she always acknowledges her identity as a consumer: “part of it again is sort of political. I don’t wanna pose as somebody that I’m just so grateful that I can’t express an opinion about how things are done. It’s like, you’ve given me audio description. Thank you. It’s not just me, and I don’t think it’s beneficial”.
Laura Sanmiquel Molinero frames her work and her department’s within Haraway’s epistemology of situated knowledges: “thus, it’s a ‘must’ to position oneself”. She acknowledges the criticism towards confessional reflexivity and puts forward that it is not enough to state that you are disabled because, within this collective, there is great diversity. What’s relevant is the epistemological approach from where you present yourself as an insider researcher.
For others, the decision is often to include positionality statements, but it is more contextual. Laura Moya Santander has positioned herself as an insider researcher, but sometimes she has also omitted her embodiment of disability in some focus groups where one of the aims was precisely to assess the participants’ discourse on disability. On another occasion, it was a publisher who was against her positioning herself, on the grounds that the article needed to be anonymised. She acknowledges that in English-speaking contexts, positionality statements are more widespread than in her own country. Piet Devos positions himself consistently, with the exception of some of his earlier research and specifically where he deemed it not particularly relevant for the topic at hand.
Finally, Ibrahim Emara makes his identity explicit to his readers because he found “a power and authority from using this”, but, on the other hand, he does not want his visual impairment to be overemphasised. He does not intend to hide it but does not wish to be perceived as a “supercrip”, “a stereotype narrative displaying the plot of someone who has ‘to fight against his/her impairment’ in order to overcome it and achieve unlikely ‘success’” (Silva & Howe, 2012, p. 178). In his publication on teaching journalism as a lecturer with a visual impairment (Emara, 2024), he makes the argument that he just uses different tools and that does not make him a “great person” or a hero. His aim is also to prove to university administrators that they should accept lecturers with visual disabilities for their qualities and skills. Overall, he does research to have impact and change things; in this sense, he does research advocacy and publication advocacy.
Reflecting on whether academics without disabilities working on accessibility and MA should follow suit and incorporate positionality statements, Cynthia Bruce believes that it is really important that they do. This does not imply that they cannot do this work, as “one of the tenets of disability studies in lots of ways rests on the value of disabled and non-disabled scholars working collaboratively”. She does struggle when non-disabled scholars claim Critical Disability Studies as their field of study, without acknowledging their privileged position and without ensuring the leadership of disabled people, therein, it is relevant to leave space and “allow critical disability studies as a discipline to be really driven by disabled researchers”. Referring to discipline practices and academic tradition customs, Naiara Larrakoetxea acknowledges that, in Spain, positionality statements are less common than in the US, for instance. In specific areas like Critical Disability Studies and Crip Studies, this is a widespread practice.
For Georgina Kleege, the key idea in this regard is that the fact that there are researchers who do not embody a disability or that are not accessibility users is not a problem as long as the people who do embody disability or are accessibility users can increasingly get to that research position: “To me, the political epistemological perspective from which we are working is much more important”. The important thing here is to fight against the barriers that prevent disabled people from accessing research positions.
In the case of Brígida Maestres, she recognises the value of positioning one’s research, but also issues a warning for positionality statements not to become “Catholic confessional booths”, meaning to just continue doing the same research without further reflection or without taking action. What’s more important, according to her, is to reflect on the underlying structures in the academic setting.
Piet Devos does not think positionality statements should be compulsory, but it is always good to see self-reflection. In some of his own articles where he has collaborated with non-blind researchers, they have stated their different contributions to the study in order to diversify their views and voices (Grond & Devos, 2016).
Finally, Wojciech Figiel believes that it would be a good idea for accessibility researchers without disabilities to position themselves because that would reverse “the burden of proof” on the basis of which researchers with disabilities are often questioned. “You should be warned that what I’m actually saying is based on my perspective as a person who doesn’t have this experience”.
From the nuanced positions towards positionality presented here, some takeaways for MA are the need to amplify studies that are based on lived experience, (with some examples being Kleege & Wallin, 2015; and Cavallo, 2015), the need for all MA researchers to reflect on their epistemological stances (regardless of where they place themselves in the insider-outsider spectrum) while avoiding “performative declarations of positionality in hegemonic contexts” (Gani & Khan, 2024, p. 2), as warned by Maestres, and the need for a more direct dialogue between MA and Disability Studies, where the voices of academics with disabilities have been more central.
4.2 Insider research advantages and risks
4.2.1 Advantages
Previous research has already pointed out an array of advantages in insider approaches. Darwin Holmes (2020, p. 6) cites “easier access to the culture being studied”, “the ability to ask more meaningful or insightful questions”, or a “deeper understanding of the culture”, among others, as possible advantages. Here, we are interested in cross-checking them with the experience of the eleven interviewees.
One first theme in terms of insider research advantages is the legitimation of both the insider researcher’s and the participants’ knowledge. In this regard, Cynthia Bruce reports that her shared lived experience allows her to frame and conduct her work “in ways that are not objectifying of my participants. It’s about situating their lived knowledge as legitimate knowledge in an academic context, where our perspectives are often devalued by simply being framed up as subjective opinions about things”. She can contribute in this regard because of the legitimacy conferred upon her work as an associate professor in a university. Additionally, her lived experience also helps her connect with her participants in ways that would be otherwise impossible without that shared experience: “It provides me with a way of entering into a constructivist and co-constructivist framework with them as we work to construct knowledge”. Overall, it enriches her “capacity to do work that’s meaningful”.
The second theme has to do with experiential proximity. In this regard, Georgina Kleege highlights that in user-led research, the research identifies with the participant; there is a proximity, an absence of a barrier, and there is no need to explain certain things. Ibrahim Emara also argues that rapport between researchers and participants (in interviews and focus groups) is enhanced when they both have a visual impairment, as they share a common area of understanding (see also Emara, 2025). However, this should not condition blind researchers to do research only within the community, as that would be isolating. Experiential proximity also allows the insider researcher to quickly identify problems or relevant research topics: Laura Moya Santander acknowledges that 1) user-led research is faster in terms of identifying a problem or barrier and 2) insiders have easier access to other users that may be interested in participating in a study. Because of these two factors, the research can potentially have a tangible application and impact. Also in terms of impact, Wojciech Figiel, referring to the development of accessibility solutions, has repeatedly observed that solutions that are made exclusively by non-members of the community are very rarely effective, whereas solutions developed, for instance, by a blind engineer work perfectly: “People think that they are doing us a favour and they are wasting tons of money because they haven’t consulted us, [or] you are invited in the very last moment and then you need to clean up after the normals”. Additionally, “we know how to explain the workings of such a project to a member of our community. We can connect with their experiences”. In this regard, when creating an accessibility solution such as an app, it is fundamental for experts from the community not only to be present in the design and the testing of the solution, but also in writing documentation for the app. It is key for the manual or tutorial to be written by an insider.
The third theme is a heightened empathy or identification that comes with the shared lived experience. In this regard, Piet Devos first highlights the value of first-hand knowledge on the issues around disability, such as accessibility barriers. This also makes one empathetic toward others facing similar, but not necessarily the same, barriers. Second, he has a lived experience of topics around social interaction and stigma, unlike outsiders. Finally, he wants to present himself as a complex person, not highlighting just one fact. In doing insider research you are able to achieve this.
The fourth theme has to do with the exploration of topics that may not be evident for other researchers. For Bertrand Verine, the advantages, specifically of his lived experience research around the sense of touch, are that he feels it is a field that can be useful both for his community of blind people, as well as for general research. His lived experience has prompted him to question the “cult of the visual” and make experiences around touch his main research interest, while for most who do research on touch, it is just a small aspect within a larger study on sensoriality.
Overall, the advantages of insider research in MA according to the interviewed researchers are, first, the legitimation of the insider researcher and the participants’ knowledge. Second is experiential proximity, which fosters common understandings between researchers and participants, helps to find (accessibility) problems more quickly, and offers better, more useful solutions. The third advantage is heightened empathy whenever researchers share their lived experiences with their participants. The fourth and final advantage is the exploration of innovative topics beyond other perhaps more mainstream and normative ones.
4.2.2 Risks
In terms of risks, the literature has also pinpointed some possible elements, such as unknown bias, excessive familiarity, or the fact that “respondents may be less willing to reveal sensitive information than they would be to an outsider who they will have no future contact with” (Darwin Holmes, 2020, p. 6), as possible disadvantages. Here we gather the main risks of insider research identified by the interviewed researchers.
The first risk is the emotional impact that insider research may have on the researcher, if not properly supported. Cynthia Bruce acknowledges that ethics committees always ask researchers to identify risks, but she believes that, in her case, it is more so about the fact that she is researching experiences of oppression. The risks she identifies are the fact that discussions about harm and hardship can be very emotional but, in many ways, this is also a benefit in the sense that it is a validating experience: “When you are in environments that really downplay your experiences of oppression, that gaslight you at every turn, then coming together with a group of folks who have lived the same kinds of experiences across a real diversity of institutions is really validating”. Similarly, Brígida Maestres proposes that a risk in insider research is the closeness of the experience and the research as a possible source of suffering (for example when dealing with topics such as the violence suffered by the researcher). Looking at oneself from a distance in a context of suffering can be challenging.
Though Wojciech Figiel sees no downsides in user-led research, specifically in the scope of the design of accessible products, he does identify one risk in doing insider research, which is not exclusive to this approach, but is shared by all researchers that conduct social research such as interviews. The researchers face being psychologically impacted by the stories that participants share. Within his community, for instance, many face challenges such as unemployment, low wages, or issues in independent living, and that may impact the researcher if they do not have psychological support. He thus advocates for psychological support for all researchers, especially those undertaking qualitative research on-site, whether they are working with people with disabilities or any other group. Often, the experience is positive because a unique bond is created based on the shared experiences: “I was actually using Pierre Bourdieu’s theory, and there he talks about this similarity of habitus between the researcher and the subject of the research and he says it’s positive because then you can get more information, better information, and you can actually act as an advocate for that person as well”.
The second risk is about the confusing role that the insider researcher may have for the participants, particularly if they know one another or are close. In Naiara Larrakoetxea’s case, her Deaf community is small, and she knows many of its members. When she’s doing research with them, she always introduces her current role as a researcher, not as an association member, for example.
The third risk lies in creating “monolithic” understandings: limiting the lived experience of participants to only one aspect (in this case their disability) or projecting one’s realities onto their participants. For Georgina Kleege, the experience of blindness or race is never monolithic, so she can feel a certain affinity to them, but there are other factors at play such as “gender, nationality, economic status and educational levels” that may be just as significant for a participants’ lived experience, for instance. Following on his reasoning on empathy and shared understandings, Piet Devos first points out that the flip side of this benefit can be becoming too overconfident, believing that, because one is disabled, they will understand the reality of another person. That is something to be cautious about because there are other factors such as the material surroundings and experiences, which are not a monolith. The risk here is to project your reality onto others. Another risk is believing that something is obvious, self-evident and overlooking its relevance or not acknowledging it.
Externally imposed risks are: 1) epistemological criticism, 2) complexities in the external perception of insider research and 3) stigmatisation. First, in Cynthia Bruce’s words, critics to subjectivity come from quantitative paradigms in the sense that “our work can’t be replicated” when “none of us are looking to replicate. We’re looking to broaden and deepen the body of knowledge in the academy that is co-constructed by disabled people”. Second, Laura Sanmiquel Molinero refers mostly to two other aspects which need to be problematized and which are related to complexities in external perception: On the one hand, her partaking in insider research has allowed her to enter certain spaces, even if the reason why is because she has been understood to be a “harmless researcher” due to underlying ableist beliefs. It has also prevented her from entering other research spaces. What is important here is to reflect on which research spaces one is able to access, and which are vetoed. On the other hand, there are complexities around proximity, “as it can be assumed that everything that is done from an insider perspective will be in favour of the interests of your collective”. This is not always true, as insider research could also be done from a supercrip perspective or through an inspirational porn lens, following Stella Young’s terminology. What is relevant is the researchers’ interpretative framework.
For Bertrand Verine, the risks in insider research in the scope of disability lie in stigmatisation: being perceived as a blind person, rather than a researcher (and being assumed to be interested in a research topic because of this). One may be suspected of not being representative. Critics will argue that the sense of touch is only relevant for blind people, and that the rest of the world does not care about it. These sorts of representations need to be avoided and, to argue that touch is a worthy subject of research not just for blind people, he points to an array of professions where touch is key: artists and craftspeople, medical doctors, divers.
Finally, Ibrahim Emara uses the autoethnography method in his research, but a disadvantage that he found is that for a long time many journals would reject this approach, critiquing a “lack of methodology”.
The risks are, thus, the emotional impact of insider research (and others), the unclear role of the researcher if they are well acquainted with the participants, the “monolithisation” of the shared lived experience, and three externally imposed risks, namely epistemological criticism, complexities in the external perception of insider research, and stigmatisation. For most of the researchers, the risks can actually be tackled or resolved (through epistemological reflection, through collaboration, through psychological support, etc.) and the general argument is that the benefits of insider research outweigh the disadvantages.
4.3 Participating in others’ research
In this subsection, we will explore the reasons why the researchers choose to participate (or not) as informants in others’ studies, how they reflect on past experiences, and how they relate those experiences to their own research including informants.
Because Cynthia Bruce is genuinely committed to amplifying disabled voices and their presence in a variety of disciplines, “I can’t just be the researcher, I also need and want to be the participant. I don’t want to do it only from one position”. In her experience, she has been able to bring her lived experience to domains that are very different from her own research.
Naiara Larrakoetxea acknowledges that people with disabilities receive many invitations, but they never receive the results. The published results are often very inaccessible to Deaf people (and even some questionnaires are sometimes too complicated). She believes in bidirectional communication in research, as it takes time to participate, sometimes even having to organise the accessibility of the interview/research activity oneself as an informant.
Georgina Kleege does not necessarily assume that a researcher who is not blind or visually impaired cannot understand or they are starting at a distance. She believes that knowledge can be acquired through sufficient study, so she does participate in others’ research. It is important, however, that researchers do not approach her just because of her visual impairment. She no longer participates in focus groups where “they bring in a bunch of people and what they’re asking you is minimal, they’re saying, do you like the round button or the square button? And I can deliver an opinion. But is that really all you want to know from me? It takes on a kind of insulting quality”. In her view, these practices need to evolve in the sense that researchers or designers ought to start from scratch, not just evaluate the accessibility of the product, service, or environment. She also believes that researchers need to embrace a diversity of opinions, “because what I might say about audio description will be radically different from the next person. And how do you reconcile those things?” She puts forward a positive example where the National Federation of the Blind in the USA was designing a museum, and they brought together a group to brainstorm ideas about how to create an accessible museum from the ground up. This is more enriching “rather than saying that we already have decided this thing, and we just want your small number of inputs. That’s not gonna yield good results”.
Laura Sanmiquel Molinero reflects on the methodological approach she applies in her own research (Narrative Production). Its aim is to horizontalize the power relations in research and to subvert the traditional logics of social research. For instance, in interviews, literal transcriptions are typically used. This produces an asymmetry between the researcher’s structured, intellectually elevated academic discourse in a publication and the oral discourse of the participant that is cited. The status of these texts is not the same. Through Narrative Production, participants and researchers work together to create a coherent, finished transcription that can be cited and stand on its own. As for her own participation in others’ research, she always takes into consideration the research team’s approach, specifically a critical disability approach, a non-medicalising approach, and a vision outside inspirational porn. Her experience thus far has been positive.
Brígida Maestres’ perspective goes against an “extractionist model” where the researcher is the owner of the knowledge and utilises the users, sometimes even infantilising them, erasing them from the academic publications themselves. She problematises the possibility of establishing truly horizontal researcher-researched relations, and the intentions behind accessibility research.
Laura Moya Santander recognises that many researchers keep repeatedly inviting the same people, and that can be overwhelming for participants.
Bertrand Verine reports that he has struggled to find research participants himself, so he participates in others’ studies on the basis of empathy and on topics that interest him as a citizen (for instance, accessibility). He has had some issues with experimental psychology studies which compare sight and touch outcomes in quantitative terms. In this regard, he feels closer to psychologist studies informed by cognitivism, anthropology, diversity, and first-person experiences.
Lourdes González-Perea has also participated in other researchers’ studies many times. Nonetheless, she pinpoints some specific issues that she has come across: the inaccessibility of consent forms, which often have a tricky design in terms of where to place the signature. She would rather ethical committees accept other forms of consent, such as recorded consent or consent through e-mail. Other aspects she has come across are the lack of planning for live subtitling or sign language interpreting, or accessibility issues when sharing a screen in a virtual interview.
Wojciech Figiel is willing to collaborate with other researchers as an informant as long as they are sensitive to the collective’s needs and, importantly, are willing to give up their platform and have a positive impact on their career. He does question the erasure of participants with disability in research projects where the participants’ contributions are anonymised. In some way, these ideas are “stolen” from expert users on the basis of ethical clearance: “I think we should give them the option to reveal their identity because they will be telling us important things which are their invention, not ours, which are their thoughts, their ideas, and they should be attributed to them”. Importantly, participants should receive fair compensation for their expert input. In sum, he thinks it is crucial for the principle to “involve disabled people as PIs, principal investigators and leaders, project leaders, with a decisive vote on the way the project is implemented” to be mainstreamed in accessibility research. He cites the Be My Eyes application as an example of good practices, as it is an app led by blind people and all important decisions therein are taken by members of the community:
This is reflected in the way they approach privacy; the steps they take to safeguard our interests. Who else is able to safeguard our needs and interests, if not ourselves? It doesn’t always work, there are members of the community that are doing harm to our interests, but still, I would defend it as a principle.
Finally, while non-user led research also has value, he believes that serious research that takes informants from the target groups should be reviewed by an anonymous peer reviewer with lived experience.
Ibrahim Emara believes that reversing roles in academia is an enriching experience. However, reflecting on his experience participating in experiments as a child in a school for blind students, he recalls some “hungry for data” practices that take an emotional toll on participants, particularly when discussing sensitive topics.
It is extremely relevant, then, to be updated with the bibliography and the previous research done by other disabled academics instead of asking them to participate in any MA research, particularly when it was not initiated by members of the community. The aim is ultimately to give up power and agency to insider researchers.
4.4 Against access?
Cynthia Bruce was the first to introduce some takeaways that often go unacknowledged in MA because most researchers in the area hold certain assumptions:
I just think there are things that non-disabled researchers are going to miss. When I think about myself and my kind of connection to audio description, the assumption from sighted folks is that I love audio description. For everything. And I actually don’t. Which doesn’t mean it shouldn’t exist. But I find it exhausting.
She cites Crip Camp as a good practice example of AD, where the information provided is really relevant. She cites “every silence being filled” as one of the reasons why she finds audio description exhausting. Similarly, Georgina Kleege does not generally like film AD and believes the developments of museum AD are closer to what people want to know (of course, bearing in mind that these modalities do not share the same time constraints).
Bruce recommends the essay that gives the title to this subsection: “Against Access” by John Lee Clark (2021): “Often the able-bodied people who provide access are providing the access that they think they would want and they’re not necessarily taking into consideration the desires of the end user”. As a general conclusion, Bruce highlights that
If the goal of access is to make the culture more inclusive, it means that the culture is going to change. And change is very scary to people. And you sort of need to acknowledge that, so you’re providing access to a group, but in doing so, that group is going to have something to bring back. They’re going to bring in a different perspective that hasn’t been acknowledged before. And if it really happens, changes things radically, makes things radically different. I just think there are things that non-disabled researchers are going to miss.
For Kleege, it is important to acknowledge that that is the goal, and it is not going to come top down; it is blind people who are going to tell us what we need to know and not the other way around.
Brígida Maestres also puts forward a critical vision on accessibility. Those who create access “depart from the fact that the world needs to be accessible to others, they don’t bother reflecting on why that world is only made in the image of some”. Also in terms of the real impact of research on accessibility, she questions the value of calling a number of disabled people organisations, abusing their time and drafting three paragraphs from their ideas. “All that for a paper that very few people are going to read”.
For Bertrand Verine, only two senses are currently being cultivated by human beings in the West, sight and hearing, and “we try to abolish, to amputate the rest”. In his view, blind people would benefit from placing the other three senses in the centre of their lives. There is “such a cult of normality and a horror towards difference that the goal is always to give blind people access to the visual. That does not interest me, although it does from a research perspective, to verify the imperialism of sight”. As Bruce, he will always defend others’ interest in visual culture, no matter how alienating it may seem for him, and will go as far as organising a photography workshop because, in his association, there were members who were interested. He himself is interested in what he can share with others: touch, taste, smell, and he champions those in his research.
These perspectives (as well as those put forward in Chottin & Thompson, 2021; Cavallo, 2015, and many others) are extremely relevant to MA, and the traditional consultancy and passive research format where participants are just asked for their opinion on a design feature will simply not nurture them.
4.5 Accessibility issues in the process of publishing
Accessibility issues proved to be consistent with many of the interviewed researchers, particularly among those who use screen readers, as amplified below. Some of the researchers also reflected on the accessibility of their research for other members of their community, and a direct comparison was established between practices in Disability Studies publication avenues and other disciplines. The results are first presented narratively and, afterwards, Table 3 gathers the main accessibility issues discussed by the researchers and their possible solutions, if proposed.
For Georgina Kleege, the issues in academic publishing have changed throughout the years. In the nineties, journals had preconceptions about the work submitted (they assumed “this is just gonna be somebody talking about the tragedy of blindness”). Now the issues lie more so in the inaccessibility of submission portals and the prioritisation of design and established aesthetics over access in some (mainstream) avenues.
Laura Sanmiquel Molinero reflects mostly on the accessibility of her own publications. For instance, she acknowledges that most of them are in English (which negatively impacts her participants’ linguistic accessibility to the results). However, her publication with the most impact (potentially also among her participants) is in her native Spanish. As one secures a tenured position, she argues, it becomes more feasible to choose more accessible avenues of publication.
Also in terms of linguistic accessibility and linguistic rights, Naiara Larrakoetxea does not report accessibility barriers in publishing but finds academic publications very inaccessible for the deaf community in general. She cites signed PhDs in Brazil as a good practice, along with publications in oral and sign languages, as was the case in this very journal’s special issue “Sign Language Translation and Interpreting Studies: contemporary remarks, perspectives and challenges” (see Rodrigues et al., 2021a; Rodrigues et al., 2021b). However, she acknowledges that the simultaneous publication of articles in an oral and a sign language require twice the amount of work and cites reach as a reason there are not many academic publications in sign language.
Laura Moya Santander now collaborates recurrently with the same co-authors, and they take on the formatting of their publications, which is a particularly inaccessible process. She also highlights the reviewing process as inaccessible, because of the comment and track-changes format (which Piet Devos also highlights), as well as inaccessible submission portals and inaccessible citation and reference management software (which Wojciech Figiel also highlights, though he acknowledges that the 7th edition of Zotero has made some progress in terms of accessibility). The published papers themselves are often inaccessible. Cynthia Bruce also comments on this, and she adds that citing a specific page number proves to be difficult.
For Brígida Maestres, the academic world is profoundly visual, and it was even more so when journals were only available in print, but the visual aspect remains. She finds podcasts useful and would like to see more audio-format academic journals in the future. In any case, as she finds academia to be an obsolete institution, she believes that it will have to move towards sensory accessibility. As it is, Maestres points out that academic writing in particular is soulless, not just inaccessible. For her, academic publishing also has to change in terms of overcoming “doing anything to get a paper out of it”.
For Bertrand Verine, academic publishing poses accessibility barriers linked to the visual hegemony in research publications and processes. These barriers also make the process longer and if he has to gain time he will ask others for help, also through the program “forfait Cécité”2. Additionally, he reflects on the lack of accessibility of older texts, which are often digitised through inaccessible scans, and cannot be accessed with his text-to-speech reader. In general, all of the cited factors have influenced him to turn to slow science (Stengers, 2018), where one is “less overwhelmed with information and can concentrate more on the limited information that we can analyse in depth”. Wojciech Figiel similarly criticises the competitive and ableist logic that dominates academia, as researchers with disabilities will always be at a disadvantage because they require more funding for assistance in attending conferences, publishing, or doing field research. Travel costs for an assistant also add up in this regard, and this is a virtually unaddressed issue that is preventing them from advancing their academic careers. Besides specific publishing issues, Cynthia Bruce also highlights the importance of human help, beyond independence.
Similarly to Bruce, Lourdes González-Perea highlights the inaccessibility of some journal templates and reviewed versions of her articles. Often, she has had other people help her with this, but she thinks this is a tedious process for all researchers that should be undertaken by the journals themselves. She also mentions inaccessible databases and the platform to upload one’s PhD thesis.
Also in terms of specifics, Wojciech Figiel highlights the inaccessibility of adding endnotes and footnotes, formatting aspects such as headings, the comment system in Microsoft Word, and reference lists. All of them are a burden in terms of the time needed.
Ibrahim Emara recalls that websites and submission platforms from academic journals are inaccessible (for instance, to upload the manuscript, it is necessary to drag the document into a box) and one has to reach out to the editorial team directly for assistance. Beyond this, language barriers are also to be cited as accessibility barriers.
Beyond academic publishing, Piet Devos highlights the relevance of insider researchers and researchers with disabilities being involved in project evaluations and funding commissions, to take part in that decision-making process and avoid gatekeeping.
As for the difference between Disability Studies journals and those stemming from other disciplines, Cynthia Bruce appreciates the process of publishing in Disability Studies journals because they require accessible formats, described tables and images. Often, they also publish simplified PDF or HTML versions. She also favours open access as “the best way to disseminate knowledge”.
Naiara Larrakoetxea has had a similar experience, and that is why she generally prioritises Deaf Studies conferences over Political Science conferences, oftentimes due to the former being held in sign language (with participants signing in International Sign), and thus not depending on the quality or the lack of interpreting. Negative experiences around accessibility conferences (beyond accessibility of slides and presentations), mostly in disciplines outside of Disability Studies, are brought up by virtually all participants.
Ibrahim Emara has found discriminatory practices towards research from disabled people in Media, Journalism, and Communication academic journals, as they usually reject articles from this perspective. He feels that they are “pushing us to submit our works to disability journals only”. In many studies, he does wish to target a Journalism and Media audience, and this is why he pushes to be published in journals from his original disciplines. A similar experience is put forward by Cynthia Bruce, who has found general Higher Education publications to be devaluing of accessibility work: “it was just a desk rejection because they said it needed to have a higher education literature focus, not disability studies literature”.
We conclude this section by gathering the main accessibility issues encountered by the researchers in academic publishing and other aspects of academic work in Table 3.
Aside from the summary of accessibility issues in academic publishing, it is worth concluding this section by calling all disciplines beyond Disability Studies to challenge the ableist assumptions which deem disability topics as “unrelated” or outside their scope. We agree with Emara and Bruce in that accessibility work (and insider research) needs to be integrated and permeate other disciplines and not remain encapsulated in Disability Studies or even MA.
5. Conclusions
To date, insider, lived experience, and user-led research has not had lengthy coverage in the field of MA, as demonstrated by the literature review and, often, it is not positioned or labelled as such, perhaps because of the nuanced understanding of positionality shared by the interviewed researchers in the current study. As researchers without sensory disabilities, we have often wondered why there are not more publications written (in English or other languages) from the perspectives of lived experience researchers sharing issues with Audiovisual Translation and MA studies. We decided that asking them why directly through these series of interviews—and purposely removing anonymity—would be instructive not only for us but also for others in MA. If our field is to be truly user-centred, then it must amplify insider expert research through collaboration, leadership, and true participation at all stages of the creative, design, artistic, management, and research processes. In this sense, MA could potentially lean into the (also) interdisciplinary area of Disability Studies, where many of the insider researchers interviewed for this study have found an epistemological approach that is consistent with their worldview.
Some of the takeaways from this study are that, first, positionality is relevant throughout the entire insider-outsider spectrum in MA and that it deserves a nuanced understanding and reflection, as many complex elements come into play (visibility and self-reflection, but also stigma and performativity). Second, the benefits and risks of insider research should be reflected upon in other epistemologies in place in MA. Specifically, the experiences of the researchers as informants must serve to make us reflect on practices in current user-centred studies. Third, for some of its users, traditional accessibility services are not relevant or enjoyable, or they do not adhere to their worldview, and we should be accounting for greater diversity (and agency and radical change) in access provision. Finally, accessibility barriers in academic publishing are yet another manifestation of institutional ableism and, in Translation Studies and MA, we have the opportunity to place ourselves at the forefront of accessibility.
Acknowledgements
We would like to extend our warmest thanks to the researchers involved, without whom this study would not have been possible. Our thanks also go to the evaluators for their constructive and appreciative comments. Finally, this research was made possible thanks to UQAM’s Comité institutionnel d’éthique de la recherche avec des êtres humains (CIEREH), the Centre de recherche culture arts et sociétés (CELAT), the Canada Research Chair on Media, Disabilities and (Self)Representations (CRCMHA), and the TraDiLex research group (2021 SGR 00952).
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Research dataset
Not applicable.
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Funding
Irene Hermosa-Ramírez’s participation in this research has been financially supported by the Juan de la Cierva grant (ref. JDC2022-049546-I) from the State Research Agency in Spain and the UnivAc project (ref. TED2021-130926A-I00), funded by the Spanish Ministry Science and Innovation and the Spanish Research Agency/10.13039/501100011033 and the European Union “NextGenerationEU”/PRTR.
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Image copyright
Not applicable.
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Publisher
Cadernos de Tradução is a publication of the Graduate Program in Translation Studies at the Federal University of Santa Catarina. The journal Cadernos de Tradução is hosted by the Portal de Periódicos UFSC. The ideas expressed in this paper are the responsibility of its authors and do not necessarily represent the views of the editors or the university.
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1
And while user-centred approaches have taken a central place in MA, other neighboring fields such as communication technologies accessibility are still operating on disability simulations, for instance, without involving users with disabilities at all (Giroux et al., 2022).
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2
In France, blind and partially blind people can be granted a fixed rate to hire different services for a set number of hours per month under the “forfait Cécité” (see https://www.monparcourshandicap.gouv.fr/aides/les-3-forfaits-de-la-pch-surdite-cecite-et-surdicecite).
Data availability statement
The data from this research, which are not included in this work, may be made available by the author upon request.
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Annex: Semi-structured interview script
- Topic 1: Warmup questions and background
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What is your education and professional background?
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How would you summarize your past and current research interests?
- Topic 2: User-led, insider and lived-experience research
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What do you think are the benefits of user-led, insider or lived-experience research?
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What do you think are the risks of user-led, insider or lived-experience research?
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As the subfield media accessibility continues to evolve towards user-centric approaches, which approaches do you consider fruitful and why? (From studies assessing informants’ input without their involvement in the study design to community-based participatory research and user-led research).
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If you have ever participated in other researchers’ studies as an informant, how do you reflect on that experience?
- Topic 3: Personal practices
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Why did you decide to undertake user-led research?
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In what ways does your lived experience shape your research?
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How do you acknowledge your identity as an academic with a disability in your publications, if you do?
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How should others acknowledge their identity as an academic without disabilities working on accessibility?
- Topic 4: Improving the accessibility of academic publishing
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How is the process of academic publishing accessible or inaccessible, in your experience?
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What aspects of academic work would you change?
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Additional question: Would you like to touch on any topic that we have not covered throughout the interview?
Edited by
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Guest editors
Willian Moura – Iván Villanueva-Jordán
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Section editor
Andréia Guerini
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Style editors
Alice S. Rezende – Ingrid Bignardi – João G. P. Silveira – Kamila Oliveira
Publication Dates
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Publication in this collection
20 Oct 2025 -
Date of issue
2025
History
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Received
22 Jan 2025 -
Accepted
05 Apr 2025 -
Reviewed
05 May 2025 -
Published
June 2025
