By Bregt Lameris, Daniëlle Amelsbeek and Lesley Verbeek

Introduction

In this contribution, we elaborate on the idea of opening the university to people with an intellectual disability (ID), which aligns with UNESCO’s recommendation to open academia «to societal actors beyond the traditional scientific community» (UNESCO Recommendation on Open Science, p. 7). As such, we examine Openness from a more socio-cultural perspective, with a focus on participation and inclusiveness, and we touch upon citizen science in a media studies context. This also forces us to consider all institutional barriers that prevent us from truly opening our doors to citizens, regardless of whether they have an ID.

Currently, the authors of this contribution form an inclusive research team at the Open University of the Netherlands. In 2023, Bregt Lameris received an NWO (the Dutch research council) starting grant to hire a PhD student on a project of Lameris’s choice. Lameris designed a project on the representation of people with an ID, preferably executed in an inclusive research project. She hired Lesley Verbeek as a PhD Student for the project, and together they managed to include Daniëlle Amelsbeek from Eemhart, who works as an expert by experience, giving workshops on plain, understandable language and on making public spaces more accessible for people with disabilities. Since joining the OU, Daniëlle has also been working as a non-conventional researcher in media studies.

People referred to with ID are a varied group that is difficult to define. The commonly used definition is people with reduced intellectual (IQ below 70) and adaptive functioning, arising before the age of 18 (Tassé et al. 2021). However, people with ID can also be defined by how they are perceived in society and met with stigma. Stereotypical beliefs leading to stigma include that people with ID continuously require help, have learning difficulties, are childlike, incapable or, in short, «can’t …» (Corrigan 2016; Pelleboer-Gunnink et al. 2021). Following that, the most significant stigma of ID would be that people are believed to be incapable in every sense of the word and specifically are excluded from research practices at universities and other research institutes.

Through our research, we encounter such stigma and stereotypes. When we tell people we collaborate on a research team, they often react with surprise: «But how? This is impossible! You have to be extremely intelligent to do research!» These reactions illustrate how strongly academic culture is impregnated with ableism, specifically concerning people with ID. The stereotypes and beliefs that intelligence and IQ are objective phenomena rather than social constructs create firm convictions about who can and cannot do research. As a result, conducting research with a person with an ID involves crossing the boundaries of traditional academic cultures, bending institutional rules and regulations, and altering research practices. It also forces us to think about what research and intelligence are, and rethink these concepts, approaching them as socio-cultural constructs of Western academic traditions (Dolmage 2017).

Disability Media Studies

Disability Studies emerged in the 1970s and 1980s alongside disability activism in the UK and the US, shifting perspectives from disability as an individual impairment needing a cure (medical model) to disability as a social construction (social model). Later, Critical Disability Studies (CDS) integrated disability into broader discussions on intersectionality, oppression, and global perspectives, advocating for inclusive research that incorporates non-conventional researchers to foster accessibility and transdisciplinarity (Goggin et al. 2018). Furthermore, Disability Studies has been implementing disability studies programs in university curricula (e.g. The University of Amsterdam, University of Leeds, Liverpool Hope University, Trinity College Dublin, University of Illinois Chicago) and advancing financial sustainability for inclusive research through funding organisations such as the Dutch ZonMW.

Meanwhile, media studies evolved from early 20th-century projects such as the Chicago School, the Frankfurt School, and the École de Filmologie into a robust discipline by the late 1970s, incorporating feminist, class, race, postcolonial, and queer studies since the 1980s. However, disability remained significantly underexplored, and only occasionally were studies published on media representations of disability and mental illness from the late 1980s onwards (Barnes 1992; Garland-Thomson 1996; Goggin et al. 2003; Hevey 1993; Longmore 1987; Mitchell and Snyder 2001; Norden 1994; Shakespeare 1994).

Despite these activities, disability and media studies remained separate academic fields. Until 2017, Elizabeth Ellcessor and Bill Kirkpatrick edited the anthology Disability Media Studies, bringing together their own and other scholars’ work in disability studies and media studies, including questions of media production, media technologies, and race and gender in media representations, all in relation to disability. With their book, the editors started to fill the disability gap in media studies and address complex issues related to disability and media. However, what is still missing in this new field is the transdisciplinary, inclusive approach that disability studies have adopted over the past decades by including people with disabilities in research practice. Occasionally, disability media scholars have a disability themselves; however, in most cases, the lived experience of disability is not explicitly included as a methodological factor. Furthermore, disabilities of traditional scholars usually fall in the categories of a physical disability or neurodiversity. The group with an ID is likely the one that is most consistently excluded from research practice, and thus the hardest to integrate into current academic practice. Making research accessible to people with ID will make it more open overall, benefiting a much larger group currently excluded from academia due to a lack of education or other factors.

Epistemic (in)justice

People with ID often have limited education, struggle to find regular paid jobs and face opposition when they try to form a stable relationship, start a family, live independently and make their own choices (Werner et al. 2012). All this goes against the rights of people with ID (United Nations 2006; Commission 2022). Additionally, although inclusive education for all levels is considered a human right in Europe (OECD 2019), it still needs to be universally achieved. Higher education and academia have the most limited access for people with ID (Buchner et al. 2021). This limited access to education and research results in epistemic injustice, as defined by Fricker (2007), meaning that individuals with ID are not recognised for their knowledge. Two types of epistemic injustice have been defined. The first is testimonial injustice, which means that the contributions of people with ID are undervalued. The second type is hermeneutical injustice, implying that societal and cultural gaps prevent people with ID from fully expressing their experiences.

One of these gaps is constituted by a difference in knowledge forms between academia and people with ID. Contrary to the academically favoured ‹propositional› knowledge (Catala 2020), people with ID frequently engage in more practical and experiential forms of knowledge. This emphasises the need to recognise varied forms of epistemic contributions to research practices. To counter epistemic injustice, we need research methodologies to include these diverse knowledge types to better capture the lived experiences and insights of people with ID (Verbeek et al. 2024).

Ways to include disability voices in research include making academic workflows and dissemination practices more inclusive. First, non-conventional researchers with ID are included in the writing process of peer-reviewed articles and are recognised for their contributions through acknowledgement as (co-)authors. Another way to include researchers with ID is to present research results together, for example, in duo-presentations. However, in addition to including co-researchers in the traditional academic workflows, we also need to consider changing academia and academic habits and workflows.

Inclusive methods

Several methods have been developed to change research practices, seeking ways to access other types of knowledge and communicate differently. I will elaborate on three initiatives: the CABRIO method, the Laboratory of the Senses and the Big Ideas workshops.

The first initiative that tried to access different forms of knowledge is the so-called CABRIO method. This abbreviation stands for Communicating non-verbally, All-the-way-inclusive, Belonging, Rest and time, Interest in each other and yourself, Ok you can make mistakes. CABRIO consists of exercises that can be combined into a so-called CABRIO training. The aim is to transform a group of individual researchers, traditional and non-conventional researchers (experts by lived experience), into an inclusive research team (Sergeant et al. 2020)

One exercise requires everyone to draw an animal they identify with as a researcher. After drawing the animal, one tries to explain how this animal represents you as a researcher. This enables non-conventional researchers to identify and explain why traditional research practices may not be effective for them. For example, Mark Koning, who has a mild ID and works in Disability Studies at the University for Humanistic Studies, discovered during this CABRIO exercise that he needs rest, time, and a slower pace when working with academics. His inner researcher identifies as a cow with four stomachs: Through research, you learn or find something that needs to be digested, chewed, and digested again and again until it is transformed into new knowledge. The exercise made him aware of this and now enables him to explain to team members that he needs them to slow down.

The exercise brings together researchers of all types in an activity focused on non-verbal communication. By drawing an animal, both traditional academics and non-conventional researchers engage in an unfamiliar activity, creating proximity between the participants. The act of depicting your inner researcher as an animal creates discomfort and unfamiliarity for everyone. For traditional researchers, who are not accustomed to drawing, and for non-conventional researchers, who are not accustomed to describing themselves as researchers. In addition, by creating a new identity through an animal, the differences between abled and disabled bodyminds disappear, creating an atmosphere of belonging and togetherness. In addition, doing such an exercise already changes the pace of doing research. Instead of a quick introduction round on backgrounds and affiliations, you take time to draw, think, and most of all, listen to each other carefully.

The second initiative, the HAN Zintuigenlabo (Laboratory of the Senses), was created by HAN (Nijmegen University of Applied Sciences) to generate an in-between space where different forms of knowledge and experience are equal. It is based on CABRIO and primarily seeks to reduce the prevalence of verbal communication in research settings. This prevalence is hard to change, due to structural ableism and a deeply rooted academic habit of communicating verbally. The Zintuigenlabo employs a multisensory approach to investigate and dismantle ableism in research teams, exploring alternative forms of collaboration and communication that utilise all the senses. Doing the exercises creates a space where other forms of communication can enable contact that might not otherwise be made. In addition, not being able to use verbal language is difficult for researchers, underscoring its persistence. As a result, the method also defies the dominance of the mind over the body in academia, bringing in the bodymind not only as a disability studies concept of the inextricable link between body and mind, but also as a tangible reality (Heessels et al. 2024).

The third initiative, Big Ideas, has quite another objective. This method was developed by Nicola Grove and Jan Walmsley in a practice-based experiment with online workshops between 2021 and 2024.  The aim is to make critical theory accessible to people with ID, enabling them to better understand injustice and stigma and to claim their rightful place in society. Understanding key disability concepts empowers self-advocates and activist researchers by strengthening their research and advocacy skills and equipping them to drive change (Grove et al. 2024).

The Big Ideas workshops consist of three main components. First, an explanation of the theory and the person who developed the theory; second, a fun activity linked to the theory; and third, a discussion of how the theory relates to lived experiences (Grove et al. 2024, p. 688). In December 2024, Daniëlle Amelsbeek, Mark Koning, Lesley Verbeek and Bregt Lameris hosted a workshop in the Big Ideas series on stigmatising representations of disability in film. During the first part of the workshop, Verbeek and Amelsbeek explained Stuart Hall’s theory of encoding and decoding to better understand how film can produce a perspective on the world that is not necessarily consistent with your reality (encoding). In addition, they explained that what you have lived and experienced influences the way you watch and interpret a film (decoding). All this was done in plain language. The fun activity linked to the theory was watching a film featuring a character with an ID. The discussion focused on how encoding and decoding shaped participants’ interpretations of the film and its portrayal of a character with an ID, and how these interpretations related to their lived experiences as people with an ID. This way, the concepts were directly connected to the participants’ viewing experiences, making them more aware of differences in how characters with ID are seen, identified with, and how emotions and feelings are created in relation to that.

Big Ideas shows that people with ID can engage with complex theories when they are presented clearly and accompanied by reflective discussions of their lived experiences. On the other hand, contributions by self-advocates enrich and, perhaps, defamiliarize traditional scholars’ theoretical understanding of concepts they have been working with for a long time. Finally, the initiative creates a neutral space where traditional scholars and self-advocates can learn together as equals (Grove et al. 2024).

Integrating inclusive research in Disability Media Studies

There is very little precedent in the form of written-out protocols for inclusive research in media studies. As a result, Verbeek and Amelsbeek’s work is an experiment in itself, finding out what works in real time. This includes getting to know each other’s ways of knowing, learning, and working, and learning to anticipate and complement each other’s capacities.

Because this dynamic would be different for every ‹traditional and non-conventional› researcher pairing, building blocks of inclusive research should include emergence, interdependence, locality, reciprocity, respect and relationality, with an eye for crip time and researcher positionality. These building blocks are inspired by interdisciplinary and situated methods in critical disability studies, feminist posthumanism, and critical indigenous studies, which all seek emergent, symbiotic relationships that subvert traditional/western objective, universal, and standardised ways of doing research and promote epistemic justice as they go (e.g. Barad 2007; Braidotti 2019; Fricker 2007; Goodley 2014; Haraway 2016; Kafer 2013; Meekosha 2011; Norris 2014).

 The room that positionality, situatedness, and embodiment provide for the researcher’s subjectivity helps navigate the emotional work done and acknowledges that work as producing valid research results. For instance, because both Verbeek and Amelsbeek are experts by experience in disability, they often have to be personal and vulnerable when analysing films that address the stigmas and stereotypes they encounter. It is the combination of the inclusive research principles above that allows the creation of a safe space in which the researchers can share their embodied lived experience, including trauma, which concretises and strengthens the film analyses and research results. Additionally, if confronted with difficult-to-deal-with stigmas (in films or real life) or eugenic propaganda materials that are part of the corpus, Verbeek and Amelsbeek try to air their grievances and emotions before moving on. This falls under ‘good practice’ and ‹relational care ethics› (Kittay 2011).

At the same time, the duo maintains awareness of the pre-existing power dynamics in the system they need to operate within, which, in itself, are exemplified by the very terms ‹traditional› and ‹non-normative› researchers. This means we participate in what Donna Haraway would call ‹noninnocent› and ‹risky› encounters and dialogue that seek to be self-aware and ‹stay with the trouble› (Haraway 2016).

Conclusion

In conclusion, the United Nations’ 2006 call for the inclusion of Persons with Disabilities catalysed inclusive research to gain further ground. It is informed by the disability studies’ adage ‹nothing about us, without us› and aims for epistemic justice. In the field of research, the voices of people with disabilities, particularly those with intellectual or learning disabilities, are rarely heard. The added value of an inclusive approach is in the quality of a) the research process and b) the outcomes, in ‹bringing something unique› (Walmsley et al. 2018).

Making your research inclusive and transdisciplinary can be difficult, painful, and time-consuming, but our experience is that it is well worth it. Not only do we find ways to research transdisciplinarily, but we also force ourselves to reevaluate whether our way is always the right one. In addition, with an inclusive research design, new and other forms of knowledge will be accessed and produced.

In media studies research, we are just beginning to open our research practices to practices such as citizen science and participatory research, let alone include non-conventional researchers with ID; therefore, all our work is partly an experiment for which we need to create a new research space with new rules and practices; an inclusive research laboratory.  What we can learn from this is that we need to find new work-paces (crip time), build in relational care moments, and, as traditional researchers, open up to others and to our own subjectivity and embodiment in the process of research.

Overall, it is one big adventure, exciting, painful, challenging, and so much fun.

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