GLOSSARY
The following collection is intended to raise awareness of collaborative research. It also aims to encourage dialogue and exchange within our network.
A gloss is a handwritten addition to an old manuscript that explains, translates, or comments on a passage of text. In the Middle Ages, such notes were written in the margins or between the lines and were considered so essential by the commentator that they were added directly to the original manuscript. Originally, glossaries were collections of such glosses. They are therefore a list of terms that explains and compiles words in a text that require clarification, offering a reading aid for the original text.
We understand this collection in a similar way. It serves as a reading tool and explanation, but not for a specific text, rather for a context. Our glossary is not meant to be exhaustive; rather, it remains deliberately wide open and fluid. It is a living resource. The short texts are reflections, commentaries, and explanations of terms that are (currently) significant for our texts and our context. They serve as reflections on our collaboration, as background information, and as an attempt to translate the nature of our collaborative work.
These and other controversies surrounding collaborative research and its terminology are usually treated as minor issues. For us, however, they are often at the centre of our attention: we reflect on them – individually or collectively – discuss them and engage with them. In doing so, our focus is often on how emancipatory approaches can be implemented in collaborative and participation-based research.
The following texts were written by members of the Co-Lab Mental Health* (Co-Lab Psychische Gesundheiten*). They have been edited only slightly, and their authors (who may use pseudonyms) are solely responsible for their content. Additional texts addressing key issues in participatory and collaborative research will be added. We have also invited guests to contribute – some of whom we have been working with for a longer periods, and others more recently.
B
Burden and Motivation: “Hang in there”
This text may be triggering!
As an example from the interview, roughly: “I was tied to a bed. I fought back. Then the nurse placed a pillow over my head.” I read that. I can’t believe it. I listen again. The image burns itself into my mind. Even later, I keep doubting that I really heard those words. I hope it isn’t true – a false memory, a misunderstanding. Did I mishear? There’s a list of terrible images in my head. A new image automatically opens it again. Again and again, the inconceivable unfolds, and horror runs through my limbs. It won’t let me go. Not just this one new memory, but old ones too – things I’ve experienced myself, seen, witnessed. I step into a space of injustice, of the use of power, of violence. “BREATHE!” I hear myself say, as if from afar. “Breathe! Walk a few steps now, read a recipe, pick up the vegetables, look at the colors. Say: orange! Yes, that’s a carrot. But no! Stop! No more images! This is now! Here is a kitchen and the vegetables. Do something with them. The knife is meant for cutting vegetables! Chop them up, make soup out of them, eat the soup. You need to nourish yourself, you need energy, because you have to find a word for what’s been described. Not that image again! Distance! Make it abstract!” What word can serve as a code for such a thing? Finally, I find a word. It’s now in a spreadsheet, next to the quote and the description of the incident. Later, others will read it. This word will shock everyone; it can trigger defensiveness or solidarity. Who you feel more solidarity with also depends on which side of the table you sat or are sitting on, and perhaps also on what hat you’re wearing right now. The word needs to be sorted. Organized, filed away, and destined to become part of a whole later on – it may never resurface in this form, perhaps. But until then, we’ll keep reading it over and over. How does this affect us? What does that do to the people on the team? How do they deal with it? I don’t know who else hides such a collection of horrors inside them. Who can put what they’ve read into a frame and then look away with ease? If that’s possible, I’d love to know how to do it! Maybe we should offer courses: “Forgetting for Beginners.” That would be something! Or would it be better to reach for a pill, just as I learned to do as a patient in a psychiatric institution? Do I need supervision, coaching, psychotherapy, or might faith or magic do the trick? Is healing even possible if you keep staring into the abyss over and over again? Isn’t it more necessary to put as much distance as possible between yourself and these things? Do I have to choose between a somewhat healthy life and working in this field? I’d love to make this word disappear. But that’s not possible! It’s part of it – part of the reality we’re trying to capture. We need it. And things should get better, after all, in hospital psychiatry. So that this kind of thing never happens again! That’s why we’re doing this. And we have a responsibility to the people who tell us these things – yes, to them first and foremost!
autonomous author
C
Compatible? – Researching with intention but without a background
I am not compatible! I haven’t been trained. I’m not up to date on the subject. I have only a limited grasp of the discourse. I’m just someone who’s affected. Affected by the research being done here. I’m at the very bottom of the hierarchy of researchers who are also affected. Others have studied something – or even the exact right thing. Creating knowledge. I observe, try to understand, and take in what I can grasp. I ask questions, seek connections, and try to draw conclusions. I have no idea – only my own, based on experience and exchanges with my peers. Thinking outside the boundaries that others have set long ago. Is that possible? In this collaboration, experienced researchers and, of course, supervisors are the ones who set methodologically and strategically grounded guidelines. This provides security and structure, but occasionally it seems necessary to rethink approaches. Some things just aren't going to work, I think – and so do the peers on the team, who often react in unison to the same oddities. Why is this being done this way? People who are affected by an issue shouldn't be excluded when that issue is being considered. And if they are included, then they should be listened to and given decision-making power. And then the peers start to comment. For example, it’s not a good idea to interview representatives of different interest groups that are interdependent. Doctors, nurses, and patients, for instance – they’ll end up being cautious or protective and won’t be as open as they would be among peers. Should one really combine the results of a survey of people who have potentially divergent needs regarding a given issue (e.g., family members) with the results of the group directly affected by the issue to obtain more informed results? And the interpretation of results can also vary.
Different perspectives then become clear, and sometimes it is not possible to find a good compromise. For example, the results of a survey were summarized as “user experience,” while some team members felt this term was not accurate or, at the very least, imprecise. As these different perspectives became clear, a process was initiated that, across several projects, led to an attempt to develop a different method of evaluation. This might not have happened without team members possessing in-depth knowledge of the situation and concerns of the group under study, nor without the willingness of decision-makers to embrace an approach that potentially carries risks. Who gets to decide? What leeway can be created? How risk-taking, creative, and experimental can a team be while still achieving the desired results? What does it take for unconventional steps to be accepted and for new ideas to be developed? There are many challenges rooted in conditions and requirements, in team structures, or even in personal traits. Different levels of knowledge, goals, attitudes, capacities, and skills must be managed and, ideally, utilized synergistically. This requires a willingness to engage in discussion, plenty of time, effective coordination, transparency and a balanced mix of a commitment to compromise and determined persistence. And, of course, it requires a goal, an intention – ideally one that unites the members of a team in a positive way.
autonomous author
Conflicts
We are not a homogeneous group. We experience every type of conflict that can arise in a work setting. All of this is particularly common in an academic context – including negative emotions, envy, insecurity, looking at others’ academic toolkits, and wondering if my own is good enough. On top of that, we all work in precarious positions and move from project to project. We want to do good work – driven by intrinsic motivation, but also so that we can keep on working.
There are conflicts that arise from the fact that we form multi-perspective teams with diverse skill sets. There are the doers, the thinkers, and the creatives. There are the commentators and those who talk a lot. There are the pragmatists and the hesitant ones. There are the quick-thinkers and the thorough ones. And there are those with backgrounds in different academic and knowledge discourses. And everyone is working on a shared project or, as in the CoLab, even across projects on a single subject. Then there are the professionals who belong to the same categories but have never experienced that complete helplessness and vulnerability in psychiatry, even if one does not deny that they have had crisis experiences. They have their academic distance; we have our academic closeness to what we are researching. Of course, there’s friction there – not just between professionals and experienced individuals, but right in the thick of it. Sometimes it even implodes, and the result is silence. This can be attributed to differences in working styles; friction arises when 90 percent of a publication is produced by two people, yet the commentators have the final say. When the pragmatists prefer to start early to get a job done, while the creatives wait until the last minute. There is a longing for fairness, comparability, recognition, for similar expectations, and the same workload.
Because most of us have experienced crises and had to find ways to protect ourselves in order to survive, it is sometimes twice as difficult. These strategies vary from person to person and are not always compatible. A crisis means having experienced existential threats, with or without violence. The fuse is always burning, though its length varies throughout our lives.
Our differences, our diversity, and our reflective experiences are a treasure; every contribution to the outcome is unique and valuable.
Daniela Schmidt
Criticism
Even from a historical perspective, there is a close connection and many similarities between participatory research and critical understandings of the sciences. For example, participatory health research has its roots in action research and shares affinities with emancipatory research approaches in disability and mad studies. In the field of mental health, some authors demonstrate how strongly user-led, but also participatory, research approaches emerged from the social movements of the 1960s and 1970s (King & Gillard, 2019), stemming from the critical engagement with social conditions and those of academic knowledge production at that time. Considering this, authors argue that a critical research approach is an indispensable prerequisite for participatory research (Fine & Torre, 2021).
The same applies to co-production, and with it the ethical and methodological foundations of collaborative research. Co-production is fundamentally aimed at redistributing power and reducing social inequality in institutional and societal contexts (Wheeler et al., 2024). The goal is to strengthen the empowerment and create greater self-determination for those (critically!) labelled “throw away people” (Cahn, 2000) that is, people who, for example, were declared “superfluous” due to reduced productivity in the context of the increasing neo-liberalization of the 1980s. In the context of these developments, the concept has also become increasingly diluted; it has been severed from its politically critical roots and appropriated within the framework of more consumerist-oriented research approaches: While the former seek to optimize healthcare according to the needs of its users, democratically legitimized collaborative approaches aim to question or challenge its fundamental structural conditions.
By critical research I mean research that, in the first place, maintains a critical relationship with its subject matter or, conversely, aims to improve the (often dire) situation of the research participants. Second, for me, it necessarily includes an explicit or fundamental reference to critical theory, or to theories of power. Third, such research requires a self-critical reflexivity on the part of the researchers, especially to examine how their own assumptions and positions influence the research process and the interpretation of its results. All three aspects can also be realized in collaborative projects simply through the composition of the research team.
In my experience, people with lived experience in psychiatry do not get involved in research because they received such good support in psychiatric settings, but because they suffered drastic abuses and violations there. The (collective) experiential knowledge they contribute (→ experiential knowledge) emerges both from political engagement and from intellectual engagement with lived experiences, as the literature on the subject demonstrates (Sweeney & Beresford, 2020). A critical dimension to this knowledge is therefore inherent in its nature, as it has been refined through often years-long efforts toward social or institutional change. In my view, this critical edge also constitutes a fundamental value of experiential knowledge, which other authors frame as the strong potential for change inherent in marginalized perspectives (Harding, 2003) or as the particular depth and sharpness of experiential knowledge (Oliver, 2009), extending all the way to the thesis of the “superiority of the underdogs” (Loick, 2024).
However, a critical approach to research is also necessary for researchers like me who lack personal experience with psychiatric care, if only to avoid misusing researchers with such experience as mere “figureheads” (Grey, 2016). Collaborative research carries the risk that researchers without experience with the psychiatric system will hold back their criticism or delegate this criticism to researchers with such experience, which can lead to an imbalance in the collaboration and the reproduction of epistemic injustice (Brosnan, 2019). It is therefore important that people like me, in both academic and clinical and teaching contexts, do not mince words when voicing our own criticism of psychiatric violence, of often toxic institutional cultures, and of the associated dehumanization of both patients/users and staff at psychiatric institutions. For some people, psychiatry can be part of the solution, but for many it is not; rather, it is part of the problem, a fact that, in my view, is far too rarely acknowledged.
In this context, I also see myself as part of this problem. I, too, have been socialized within the “psychiatric system” and reproduce notions of “mentally ill/healthy” that are hurtful or even harmful to some people, or contribute to their social hegemony. My aim in offering this criticism is not to place myself above my colleagues, but rather to recognize that I, too, am subject to the effects of psychiatric power dynamics. I therefore try, as thoroughly as possible, to reflect on my work-related motivations, feelings, desires, and goals to be able to counteract them. Furthermore, I too can be affected by this system. Certainly not in the same way as patients/users, but still very personally and as a painful repetition of violence experienced within the family or in society. The last aspect of personal involvement also seems to me to be significantly underrepresented in the work of critical psychiatrists (Middleton & Moncrieff, 2019). Perhaps this is one of the reasons why critical and anti-psychiatry has historically been little to no participatory or in alliance with the movement of people with lived experience of psychiatry.
In medical sciences, critical thinking is often equivalent to “critical appraisal,” that is, a critical and reflective evaluation of research results and clinical practice. This falls short for me, because this evaluation implies more of an intellectualized examination based on a specific logic and less of a fundamental, emotionally charged, urgent questioning of the underlying values, bodies of knowledge, and foundations of scientific and practical endeavours. I understand my scientific work as intertwined with my activist engagement (→ allyship), as envisioned in concepts of engaged research. For me, all research (not only collaborative research) is always situated and positioned, which means that scientific contributions are always also a form of political work (Haraway, 1988; Latour & Woolgar, 1986). I therefore cannot conceive of collaborative and participatory science as non-critical, especially not when it explicitly aims to bring about change in the respective subject of investigation.
This makes me even more surprised by the resistance we encounter with our collaborative research. Repeatedly, the collective experiential knowledge we aim to work with is dismissed as a “personal opinion” or “subversive,” which, in the context of peer review for grant applications or scholarly publications, can take on existential dimensions for us. Here, a hermeneutics “of faith” (Josselson, 2004) would be helpful on the part of the reviewers (and, incidentally, in clinical-practical contexts as well) meaning an attitude that first believes people and follows their reasoning, rather than problematizing or pathologizing them and demanding ever more “evidence.” It would also be helpful to have a greater understanding of concepts of testimonial and hermeneutic injustice (Fricker, 2013), and, related to this, to recognize that insights beyond hegemonic concepts such as “diffuse criticism” can resonate because they connect with language and feelings that are not yet well articulated or understood. Criticism would then become a welcome invitation to a new or deeper understanding, rather than being dismissed as “activism” or “disruptive.”
Sebastian von Peter
D
Diversity
Diversity is an umbrella term: it encompasses all possible constellations that describe a concept of diversity – that is, the presence of people with diverse life realities, identities, and vulnerabilities. Adorno once stated that “being able to be different without fear” was the foundation for a desirable coexistence (Adorno 2016, 116), criticizing the actual constitution of capitalist society.
The demand for diversity in various representative areas, such as research, describes a contradiction: our society is characterized by a wide variety of people who lead their lives in diverse ways. Nevertheless, we must demand diversity because there are powerful mechanisms of exclusion (gatekeeping) that result in more privileged groups having greater access and, accordingly, more power. Critical analysis of classism, racism, and ableism are crucial in research because school qualifications are more or less achievable depending on the parental home, (racialized) surnames, and (assimilated, i.e., neurotypical) performance in the education system.
In my research experience, the exclusion of marginalized people is also evident, even though the Co-Lab – conceived as a collaborative research approach – brings together individuals with lived experience of psychiatry and/or diagnoses (that is, Mad/neurodivergent people) as well as neurotypical researchers. There is a tendency in (collaborative) research contexts to focus on a single axis of power (in our case, sanism – that is, discrimination against people with psychiatric experience/Mad people) while overlooking other structures of exclusion, such as racism. However, the knowledge of researchers and the production of knowledge must reflect the diversity of lifestyles and experiences, not only to enable equal opportunities, but also because this knowledge is essential for developing new insights into our (co)existence: Patricia Hill Collins (2009) distinguishes between two different forms of knowledge: On the one hand, there is book-based knowledge, and on the other, there is wisdom, which is generated by one's own experiences and learning. Experience-based knowledge is marginalized knowledge, i.e., wisdom from people who are located on the edges of society. In disability studies, Anne Waldschmidt argues that disability is a knowledge-guiding moment for analyzing and transforming society (Waldschmidt & Schneider 2003).
Diversity therefore not only reflects social reality, but is also the appropriate base for consistent production of knowledge. It is important to take diversity seriously in all its complexity and intersectionality, i.e., its interconnectedness. In a past MHB project (“Mind the City”), we attempted to address racial exclusion and form a more diverse team. We failed due to a lack of knowledge, a lack of role models, and limited willingness or ability to radically rethink our approach. Researching in a diverse team is challenging because the power relations in society also characterise the microcosm of the working group.
Sannik Ben Dehler offers guidance for these challenges and identifies three core areas that should characterize intersectional research: “Recognition of marginalized knowledge, promotion of distributive justice, and reflection on one's own practices of exclusion” (Dehler 2024, 71). This guidance could be a starting point for shaping diversity within a research team, doing justice to diversity in the field of research, and generating and sharing new knowledge and wisdom. The goal is nothing less than the fearless embrace of diversity.
Adorno, Theodor, W. (2016): Minima Moralia. Berlin: Suhrkamp
Collins, Patricia Hill (2009): Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. New York/London: Routledge
Dehler, Sannik Ben (2024): Zur (Un-)Möglichkeit, intersektional zu forschen. Entwicklung eines Fragenkatalogs zur Reflexion epistemischer Gewalt. In: Gender: Zeitschrift für Geschlecht, Kultur und Gesellschaft, Jg. 16 (2024) Nr. 2, 71–87. DOI: https://doi.org/10.25595/2993.
Waldschmidt, Anne; Schneider, Werner (2003): Soziologie der Behinderung – Aktueller Stand und Perspektiven einer speziellen Soziologie. In: Allmendinger, Jutta (Hrsg.). Entstaatlichung und soziale Sicherheit. Verhandlungen des 31. Kongresses der Deutschen Gesellschaft für Soziologie in Leipzig 2002. Opladen Leske + Budrich,
rosa* Kato Glück
Discrepancy and Dissonance “Crazy!”
Collaboration within a team will always be a challenge given the contrasting experiences and positions within the treatment contexts being researched. Discrepancies and differences in perspective may not always arise from professional or personal experiential knowledge, but they often do. Different perspectives can create discrepancies that may become obstacles in the long term. As an example, I will describe here the use of a specific term: When the term “user” is to be used instead of “patient,” the intention behind this is, among other things, to empower people who tend to play a passive role and are subordinate to others. It also makes sense to choose the term “user”, or “Nutzer” in German, because “user” is already established in English. Some people with experience in psychiatry consider the intention to positively influence the position of a group of people in a specific context characterized by an unequal balance of power through the choice of words to be a mistake. The term “user” suggests that patients would choose the medical services offered voluntarily and without necessity, that they would make use of them for themselves in a self-determined way – that is, simply “use” what is offered to them. Much like one might take advantage of an offer from their favorite hair salon when their hair has grown too long. No! No one goes to a psychiatric facility as a patient without good reason. And there is also no alternative to this.
When it comes to the treatment clinic, there is no choice either. Perhaps some “users” feel more connected to the idea of self-determination, personal responsibility, or self-efficacy when they are not addressed as “patients.” But, as is revealed in interviews, for example, many do not feel that this applies to them at all. You must explain it to them! They see themselves as “patients” and refer to themselves as such. From their perspective, the difference in decision-making power between themselves and healthcare providers is impossible to overlook: they have a health problem (or others perceive it that way), and the healthcare providers are expected to have a solution for it. This dynamic embodies the hope for help and healing, but also the necessity of accepting one’s own subordinated position. Healthcare professionals, or the institution of the clinic, establish the rules that patients are expected to follow, and – particularly in psychiatric settings – may enforce them through coercive measures if necessary. Some patients have literally no choice but to accept treatment because they are not in a hospital voluntarily. Simply rebranding “patients” as “users” does nothing to change their situation! And the term “users” sounds cynical when a solution prescribed by medical professionals turns out to be a long-term burden. This change in terminology obscures the situation. Nevertheless, the term “user” is used in everyday research. Who has prevailed here? For some researchers with treatment experience, it feels like a misleading term when they must speak of “users”. A deception they are forced to participate in. And so, as researchers, they experience their own perspective being overlooked. They must then live with an inner dissonance. Furthermore, what they already know from their own psychiatric experience is repeated, as the dynamics are reproduced within the research group. How might something like this affect the relationship between members of research teams? And how can this be resolved?
autonomous author
E
Emotional Labor
Previous discussions on the matter of emotional labour in the field of participatory or collaborative research have primarily viewed this labour as falling on the shoulders of researchers with lived experience of psychiatric care (Brosnan, 2019; Faulkner & Thompson, 2023; Voronka, 2017). This perspective is justified by the limited resources they often must cope with (→Funding) as well as other structural issues that mean researchers with lived experience of psychiatric care frequently must invest significantly more effort to be heard, often with little success (→pseudo-participation). However, emotional labour in the field of participatory and collaborative research is also performed by researchers who work as staff in psychiatric institutions, if only in a different way – I do not intend to compare the two! – a topic that has received little attention in the literature to this point (Church, 1995; von Peter & Bos, 2022).
Collaborative research always involves relationship-building and emotional demands on one another (Beeker et al., 2021). It requires an attitude of “passibility” (Wisselink et al., 2025), that is, vigilant patience to endure and address differences without losing one’s composure or having to end the relationship outright. In one project, it took me three months to realize that staff in psychiatric care have a (completely) different level of power to act than patients – given the intensity of these discussions especially for the user researchers involved, this is a (unpaid) challenge for all involved to deal with unpleasant feelings (e.g., feeling misunderstood, unheard, or unable to express oneself) while still maintaining communication with one another. At the same time, vulnerable (→ vulnerability) and fragile (→ fragility) positions are distributed unevenly within collaborative research teams, which leads to unequal burdens in this regard.
My realization took so long to emerge partly because I often underestimate my own influence within psychiatric care (due to feelings of powerlessness and/or a defence of my own privileges?) and needed time to (re)engage with questions of my own responsibility in this context. These questions of responsibility as a psychiatrist, however, are closely linked to my personal and family background. These, in turn, are fundamental to my critical stance toward psychiatry (→ criticism), which makes it clear that even researchers without personal experience of psychiatric treatment cannot rely solely on their academic or clinical roles in collaborative research, but are always needed to involve as “complete human beings”, with all their strengths and weaknesses, fears, and reservations.
The reflection on our motivations, positions, and attitudes (→ allyship) often raises personal, biographically grounded questions (von Peter & Bos, 2022), for whose understanding, emotional processing and management we need time, courage, and energy. Although the original concept of allyship hardly takes this kind of work into account, I consider such a reflective, often lengthy and emotionally driven engagement – for example with one’s own positionality – to be a form of emotional labour, because it (1) is not “priced in” in (including non-collaborative) research and is therefore performed unpaid, and (2) mobilizes a personal process of reflection in order to achieve work-related objectives.
As a second example, I would like to refer to my engagement with the notion of “perpetration” among psychiatric professionals, which was likewise only set in motion through my involvement in collaborative research. Like many people working in the social professions, I became a psychiatrist to make the world a somewhat better place and to help others. It took considerable effort for me to recognize that I do not (per se) belong to the “good” people in this world. I, too, contribute to harm and to the reproduction of inequality – within psychiatry, for example, through the implementation of treatments against a person’s will or sometimes even through the careless assignment of a diagnosis. The concept of “perpetration” (Chapman, 2010) is a strong one, but it is not poorly chosen for the purpose of gaining insight, as it helps me to thoroughly rethink and emotionally grasp my role within the system.
These and other – above all emotional – processes of engagement repeatedly lead to feelings of guilt and shame for me (Ogette, 2025). On the one hand, these feelings are important for understanding what is happening within me or within the project; on the other hand, they can also render me incapable of acting. In such moments, it helps me to adopt a structural perspective: all of us reproduce power and harm every day, no matter how hard we try not to, because we all exist within the same systems. This shared condition helps me to acknowledge my mistakes, learn from criticism, and offer apologies (→ allyship). While this does not protect against empty “pseudo-apologies” (Davidow, 2020), it can significantly facilitate collaboration.
Beeker, T. et al. (2021) “Designed to clash? Reflecting on the practical, personal, and structural challenges of collaborative research in psychiatry,” Frontiers in Psychiatry, 12, p. 701312. Available at: https://doi.org/10.3389/fpsyt.2021.701312.
Brosnan, L. (2019) “The Lion’s Den’: The Epistemic Dimensions of Invisible Emotional Labour in Service-User Involvement Spaces,” Journal of Ethics in Mental Health, 10, pp. 1–16.
Chapman, C. (2010) Becoming perpetrator: How I came to accept restraining and confining disabled Aboriginal children. PsychOut: A Conference for Organizing Resistance Against Psychiatry, OISE, Toronto. Available at: http://www.individual.utoronto.ca/psychout/papers/Chapman_paper.pdf (Zugang: 19. März 2026).
Church, K. (1995) Forbidden narratives: Critical autobiography as social science. Amsterdam, Netherlands: Gordon & Breach Science.
Davidow, S. (2020) Power means never say you’re sorry. Mad in America. Available at: https://www.madinamerica.com/2020/01/power-means-never-say-youre-sorry (Zugang: 19. März 2026).
Faulkner, A. and Thompson, R. (2023) “Uncovering the emotional labour of involvement and co-production in mental health research,” Disability & Society, 38(4), pp. 537–560. Available at: https://doi.org/10.1080/09687599.2021.1930519.
Ogette, T. (2025) EXIT RACISM, Exitracism.de. Available at: https://www.exitracism.de (Zugang: 19. März 2026).
Peter, S. & Bos, G. F. (2022): The Necessity of Unsettling Encounters in Collaborative Research – Reflections of Two Researchers without Experiential Expertise. In: Collaborations: A Journal of Community-Based Research and Practice, 5(1), Art. 4, S. 1–15.
Voronka, J. (2017) “Turning Mad Knowledge into Affective Labor: The Case of the Peer Support Worker,” American Quarterly, 69(2), pp. 333–338. Available at: https://www.jstor.org/stable/26360855.
Wisselink, A. et al. (2025) “Passible polyphony: An extensive team-reflexivity process for hierarchical, transdisciplinary research teams,” Qualitative Research [Preprint], (14687941251350875). Available at: https://doi.org/10.1177/14687941251350875.
Sebastian von Peter
F
Failure “What am I even doing here?”
We met, we talked, trying to understand. Lying awake at night, searching for questions that will never be answered. But we didn’t realize that until much later. It was really complicated and confusing, and it took a long time to figure out who was trying to pull the strings here. With the best of intentions, of course. Everything was flipped and turned. Over and over again. Until suddenly: “SNAP” – it was all gone. We’re starting over from the beginning. …
We’re sitting in a group, staring at a screen. A graph. Two axes, and dots in the space between them. Some bigger, some smaller. Somehow, something is connected to something else. Our results were used to calculate some other sort of things. An explanation: what is it, and what does it mean? And how did it happen? We weren’t really there, after all. Even the point of it all is pretty unclear and only vaguely guessed at. Now our names are listed under an article. …
There is this worst thing. The thing no one wants to talk about. Or can’t stop talking once they start. Something that can happen when you’re in a psychiatric facility. “This is important!” we say, “That needs to be seen too!”. “Absolutely!” We collect it. We ask questions about it. That’s not enough. It gets left out. It gets eliminated. “Too bad”, I think at first. Then, “What am I even doing here?”…
We’ve discovered something! We see a connection. Apparently, no one has really looked into this before. This is important! We want to talk about it. Within our team. The discussion gets postponed. We have to keep on working! “But we have to keep this in mind,” we think, “otherwise things will go wrong!” The discussion gets postponed. If no one wants to talk, we’ll write a letter. We’re told to wait. We ask again. We’re told to wait. No one answers anymore. The team splits. The people with the unanswered questions are in one corner, the others in the opposite. The others write an article – the one that fits – for the list of publications. Our results are swapped around, twisted, unrecognizable. “What am I even doing here?”…
We’re a team. We work hard together. Something doesn’t seem right. Suddenly, someone drops out. Some of us do the work alone. We carry on alone, despite all the grime that sticks to our hands. We can handle it. Right at the end: someone inserts their words into our text. We’re not a team. We never found out what went wrong. “Whatever,” I think, and then again: “What am I even doing here?”…
I write content based on what the others have decided. Exactly according to their specifications. That takes a toll on me. After weeks, someone says: “I want it done differently.” Now I’m done. “What am I even doing here?” …
I’m writing a text for some type of glossary: “Failure.” Another attempt like so many before …
autonomous author
Fragility
Fragility, or brittleness, in contrast to toughness or resilience, appears in this glossary as part of the paired concept of vulnerability (→Vulnerability) and fragility. Vulnerability refers to a “possibility of being harmed,” whereas fragility points to “a specific condition of the thing itself” (Dederich & Zirfas 2022: 194). People with experience(s) of psychiatric treatment, for example, may be vulnerable due to these experiences and the discrimination, trauma, and stigma that (may) accompany them. Fragility, on the other hand, refers primarily to the structures that then affect users and render them vulnerable.
In her concept of White Fragility (2011), Robin DiAngelo describes (white) fragility as an impulse to defend privileges rooted in racism. One result of this is that most white (in this case, fragile) individuals cannot cope with challenges related to their own racist behavior and usually react with defensiveness rather than empathy, failing to take responsibility. This fragility manifests itself in a desperate attempt to deny racism in order not to lose these advantages and simultaneously involves the constant repression and reinterpretation of the actual power dynamics.
The concepts of vulnerability and fragility share many similarities: they describe a state of sensitivity, brittleness, and exposure to harm. The difference lies in the perspective: Who is placed in a vulnerable and exposed position by whom or what? In our work in psychiatric healthcare research, the fragile position is assigned to people without experience of psychiatric treatment and the underlying sanist structures. Sanism means that people with diagnoses or experiences of crisis are discriminated against, whereas people without these experiences receive certain privileges.
Fragility has the remarkable quality of being able to have both positive and negative impacts. For the person in a fragile situation – in our case, our staff members without experience concerning psychiatric treatment and/ or mental health crisis – it can be perceived as threatening, as a loss, as if privileges might be taken away. However, it can also signify a hope-for change or a liberation from old structures (Dederich & Zirfas 2022: 196). In our case, it could also be a liberation from standards that come with “being normal,” such as conformity, supposed objectivity, rationality, functionality, seriousness, invisibility…
Let us consider fragility and vulnerability as a potential for change and take responsibility for our actions. Perhaps our collaboration will turn into something more irrational, non-conformist, and visible, entirely in line with Richard Ingram’s motto “Making (Non)sense Together” (Ingram 2016).
Dederich, Markus; Zirfas, Jörg (2022): Glossar der Vulnerabilität. Wiesbaden: Springer VS.
DiAngelo, Robin (2011): White Fragility. In: International Journal of Critical Pedagogy 3 (3), 54-70.
Ingram, Richard A : Doing Mad Studies: Making (Non)sense Together. In: Intersectionalities (2016),
Vol. 5, No. 3 (Special Issue) Mad Studies: Intersections with Disability Studies, Social Work, and Mental Health
rosa* Kato Glück
Funding and Financing
My message is very simple: collaborative research needs freedom and continuity in funding and financing! In the following, I use the term “funding” to summarize the obstacles that make it difficult for collaborative research to secure financial resources. The term “financing” refers to the (im)possibilities of compensating research staff who work in collaborative research projects based on their experiential knowledge. '
Much has been written about how conventional funding frameworks are incompatible with participatory or collaborative research (Bethmann, Behrisch & von Peter, 2021; ICPHR, 2021; von Peter et al., 2020): there are hardly any funding opportunities for joint applications, project durations are too short, and insufficient consideration is given to the increased resource requirements of these projects. In contrast, there is a lack of systematic studies that empirically demonstrate the connections between financial control and agency. This is all the more serious given that, in our experience, financial control can develop immense influence on the structure of a work programme or research relationships. The redistribution of agency necessary for participatory and collaborative research would therefore require more fundamental changes to the logic of access to resources: self-help and advocacy organizations should be given the opportunity to apply for funding as lead applicants in order to reduce structural dependencies, which always have an impact on the production of knowledge (Carr, 2019). This requires significantly reduced-threshold application procedures and sequentially portioned funding, as is already possible in the Netherlands (NWO, 2026; ZonMw, 2026).
The consequences of precariously funded or unfunded collaborative research have also been widely documented (Carr, 2019; MacKinnon et al., 2021; Papoulias & Callard, 2022). Discontinuous third-party funding is unsuitable for this work because projects often build upon one another, in the sense of a continuous development of new or alternative knowledge, the success of which depends on the researchers’ ability to secure their livelihoods on an ongoing basis. Many researchers with lived experience of the psychiatric care system also live in precarious circumstances. They often have few or no alternative jobs that provide a livelihood, which limits their freedom to choose whether to participate in collaborative research. Considering the diversity of their life situations and rigid remuneration systems, creativity is often required just to find a funding pathway. Added to this are questions regarding the calculation of working hours: emotional labour (→ emotional labour) is mostly invisible; in our projects, we therefore calculate a flat rate of 1/3 of working hours for this.
Furthermore, current pay scale systems lack pay levels and logics that acknowledge experiential knowledge. Combined with the often-insufficient appreciation of this knowledge in academic contexts, this results in researchers with lived experience of psychiatry being classified at a significantly lower pay grade in many cases, raising the question of whether the so-called status of experience-based expertise (!) is always considered financially. In this context, a number of studies (Carr, 2019; MacKinnon et al., 2021; Papoulias & Callard, 2022) identify various forms of material precariousness, ranging from insecure employment to outright exploitative conditions – circumstances that, in and of themselves, can contribute to the creation of (either perceived or actual) states of epistemic inferiority among researchers with lived experience of psychiatric care.
Bethmann, A., Behrisch, B. & von Peter, S. (2021): Förder- und Rahmenbedingungen für partizipative Gesundheitsforschung aus Projektsicht. Bundesgesundheitsblatt – Gesundheitsforschung – Gesundheitsschutz, 64(2), S. 223–229. https://doi.org/10.1007/s00103-020-03274-w
Carr, S. (2019): ‘I am not your nutter’: A personal reflection on commodification and comradeship in service user and survivor research. Disability & Society, 34(7–8), S. 1140–1153. https://doi.org/10.1080/09687599.2019.1608424
International Collaboration for Participatory Health Research (ICPHR) (2021): Positionspapier 4: Finanzierung partizipativer Gesundheitsforschung. Stand: Juli 2021. Baltimore, USA: Internationale Zusammenarbeit für partizipative Gesundheitsforschung.
MacKinnon, K. R., Guta, A., Voronka, J., Pilling, M., Williams, C. C., Strike, C. & Ross, L. E. (2021): The political economy of peer research: Mapping the possibilities and precarities of paying people for lived experience. The British Journal of Social Work, 51(3), S. 888–906. https://doi.org/10.1093/bjsw/bcaa241
Netherlands Organisation for Scientific Research (NWO) (2026): Dutch Research Agenda (NWA). Verfügbar unter: https://www.nwo.nl/en/researchprogrammes/dutch-research-agenda-nwa (Zugriff: 19.03.2026)
Netherlands Organisation for Health Research and Development (ZonMw) (2026): Knowledge utilisation. Verfügbar unter: https://www.zonmw.nl/en/about-zonmw/knowledge-utilisation (Zugriff: 19.03.2026).
Papoulias, S. C. & Callard, F. (2022): Material and epistemic precarity: It’s time to talk about labour exploitation in mental health research. Social Science & Medicine, 306, 115102. https://doi.org/10.1016/j.socscimed.2022.115102
von Peter, S., Bär, G., Behrisch, B., Bethmann, A., Hartung, S., Kasberg, A., Wulff, I. & Wright, M. T. (2020): Partizipative Gesundheitsforschung in Deutschland – quo vadis? Das Gesundheitswesen, 82(4), S. 328–332. https://doi.org/10.1055/a-1076-8078
Sebastian von Peter
More articles to come
P
Perspectivism
In epistemology, perspectivism refers to the fundamental belief that all possible knowledge we can have about the world is essentially shaped by the point of view and subjective characteristics of the individual perceiving it. This fundamental idea dates back to 17th-century philosophy and is reflected in Immanuel Kant’s (1724–1804) historically seminal assumption that “things in themselves” are not directly accessible to cognition. It was further radicalized by, among others, Friedrich Nietzsche (1844–1900), who posited that the world is given to us solely in the form of diverse, deeply subjective interpretations.
Is it therefore a matter of opinion or individual preference what two plus two equals? Even perspectivists generally do not doubt the universal validity of mathematical and logical laws. But things get complicated at the very least when it comes to the question of what exactly “universal” means and how a law is defined. As soon as assumptions about the human world and our coexistence are involved, perspectivism inevitably comes into play. This also applies to science, which often presents itself as perspective-independent and neutral. While correctly performed calculations and statistics may, from a mathematical perspective, meet the highest standards of objectivity, experimental designs and the interpretation of results are themselves inevitably shaped by perspective-based knowledge. This means that whenever science is to have a practical impact on society, we are no longer operating on objectively mathematical ground, but rather in the realms of perspective.
Contrary to what is often assumed, however, perspectivism does not imply complete arbitrariness. On the contrary: since ultimate metaphysical justifications in particular are not accepted, the standards for the quality of the arguments used to defend a perspectival standpoint become higher. This quality generally increases to the extent that subjects reflect on the perspectivity of their own standpoint, incorporate their inner multiperspectivity (e.g., by making judgments from the perspective of the various roles a person can hold) and take into account the perspectives of other people. In this way, at least an approximation of a kind of imperfect objectivity is possible – a “super-subjectivity” – which, however, does not claim to be absolute. Achieving precisely this kind of “super-subjectivity” can, epistemologically speaking, represent a legitimate and realistic goal of collaborative work that explicitly involves the inclusion of heterogeneous, if not outright opposing, perspectives. At the same time, perspectivism also implies an ethic of humility in dealing with one’s own knowledge, regardless of its sources. While perspectivism provides a powerful tool for collaborative research to decisively reject claims of objectivity – such as those made by medical science or the field of psychiatry – it fosters a culture of respect and cooperation internally, since reality can only be approached from multiple perspectives.
Internalizing this perspective-based way of thinking in collaborative work has had various effects on me personally. It makes it easier for me to express thoughts that do not necessarily align with the group's consensus, such as when I speak from the perspective of employees in the psychiatric field. It is clear that this is just one perspective among many, but one that still has a right to be articulated in the interest of creating a “super-subjectivity.” At the same time, I feel protected by disclosing that in such moments I am speaking only from a specific perspective – one that, while personally connected to me, is not the only perspective I hold, because in my life I have been and am much more than a psychiatric staff member.
Furthermore, this perspective-based way of thinking also influences how I handle comments from my colleagues in collaborative work. Especially in interpretive work such as the analysis of interviews, it happens relatively often that I feel a sense of contradiction. This can be the case, for example, when I perceive statements made by colleagues with experiential expertise as overly generalizing or their interpretations as too negative. Reflecting on the perspectival nature of reality makes it easier for me to offer an additional interpretation – even in the case of very strong opinions shared by many in the room – through my own dissent. My intention is not to prove myself right; rather, it is entirely sufficient for me to acknowledge together that the issue under discussion can, of course, be viewed differently. Speaking more generally and with reference to the group as a whole, a perspective-based way of thinking – which I, at least, always perceive as one of our implicit working principles – means that conflicting positions are allowed to coexist. Tensions, which are pretty much inevitable in collaborative work, therefore do not necessarily have to be resolved. And in my experience, this, almost paradoxically, contributes significantly to a sense of ease, both for the entire group and for myself.
Timo Beeker
Perspectivism
For me, the perspectivism mentioned here is less an abstract epistemological position than an insight that arises from engaging with reality itself: that reality does not simply exist, but always appears only through perspectives. Perspective is not merely the way in which we perceive reality – it is the way in which reality comes into being at all. In this way, reality is always perspective-based.
This also means that perspectives are not merely subjective filters that distort a pre-existing reality. Rather, they are the condition for anything to appear as real at all. Reality remains independent of individual perspectives – but it is accessible only through them. Every perspective therefore brings something real into appearance, even if it necessarily does so only in a fragmentary and incomplete way.
From this understanding it becomes clear to me that this cannot be a matter of competing perspectives. Perspectives are not opinions that should be played off against one another. If they are constitutive ways of relating to reality, then their diversity does not imply arbitrariness. Relativism arises only when perspectives are misunderstood as interchangeable constructs. In contrast, reality itself remains constant – what changes is only how it is apprehended in each instance, and the realization that one’s own perspective is always just one among many.
Under these conditions, objectivity cannot consist in eliminating perspectives. Rather, it arises where we succeed in relating perspectives to one another. This is not a matter of mere addition, which would ultimately yield only a fragmented overall picture, but of a process in which perspectives relativize one another and thereby enable new insights.
In this context, adopting another’s perspective becomes central: it is not a methodological add-on, but the practical implementation of this understanding. Engaging with other points of view does not mean abandoning one’s own perspective, but rather acknowledging the structural perspectivity of reality and making productive use of it – with the aim of expanding its meaning in an intersubjective way.
Timo Beeker
Plausibility
It should be plausible.
It should be made plausible.
Credibility through numbers
This many knew it.
This many knew nothing.
Where there’s already something, more is added.
Tagging along
Calculated for applause
Otherwise it won´t appear plausible.
Only say something if others have already said something like that before.
Be able to say who has already said something about it.
For the sake of science!
Where is the beginning?
It seems plausible,
close to common sense.
But otherwise, no appearances, please!
Mara Lamprecht
Positioning
With the Enlightenment, science had emancipated itself from the Church, which had previously determined what was true, yet it had often enough become the handmaiden of totalitarianism or political interests. For this reason, the supposed objectivity of science has been met with controversy in discourse.
Before I became a so-called peer researcher, I was a theologian. A field of study that expects its practitioners to take a certain stance: an orientation toward the tenets of faith, a reflective engagement with one’s own beliefs, and a connection to the congregation and to tradition. My first steps in peer research revealed many parallels to theology. A spectrum of personal experiences, often involving powerlessness and injustice, the necessity of reflecting on the personal significance of those experiences and their political consequences, and at the same time the openness and self-regulation of one’s own ideas in the face of the peer group, the collective experience of other affected individuals. It is not my experience alone that is decisive, but rather an awareness of the underlying structures that affect many people. I found this both confusing and fascinating. Does the theory of “positioned science” take us back to a time before the Enlightenment? No. Not only because modern theological scholarship emphasizes the necessity of critical reflection. It is closer to peer research here than it was in the Middle Ages. It is itself affected by the subject it studies. In peer research, the experience is that help is needed and desired, yet structural and even physical violence is endured. I situate myself within this field of powerlessness. I make my positioning public like a confession: my approach, my intention, and my questions are influenced by my own experience and that of others, but I must always be prepared to reflect on and question them. Otherwise, it is not science.
A second key aspect that it shares, in the best sense, with liberation theology is its stance apart from power, its sensitivity and solidarity (→ solidarity) with the disenfranchised and silenced. This is the ideal that must be defended repeatedly, alongside the pragmatics of walking a fine line between funders and feasibility. There is no such thing as academic freedom; there are areas of pressure that constantly require reflection, resistance, and fighting. There are always dependencies on funding programs and trends, and there are hiring dynamics. It is often difficult to keep the voice of belief in change audible. After the research, funders opt for the cheapest and lowest common denominator instead of daring to make the big changes and take the long-overdue steps. It takes constant, persistent critical self-reflection and the enthusiasm of the initial phase to maintain one’s position.
In addition, there are always interview situations that make it clear just how privileged I am. This reveals feelings of guilt and shame (→ Guilt and Shame). I make a living talking to people who can barely survive. A few less coincidences in my life and I would be in their position. But I am aware that this thought did not occur to my professional colleague, to whom I told how this affects me. There is no rigid boundary between me and the others; there are permeabilities and emotional labor (→ emotional labor) involved.
Daniela Schmidt
Pseudo-Participation
Pseudo-participation refers to the apparent inclusion of people in decision-making processes without granting them any real influence. The decisions are either already predetermined, or participants’ feedback is ignored or used selectively. Closely related terms include token participation (tokenism) and instrumentalization. The former describes a representative, symbolic form of participation in which individuals are misused as “figureheads” (tokens), because they have no structural power to influence outcomes. Instrumentalization occurs when participatory formats are used to advance or legitimize one’s own interests. It can be understood as the motivation behind pseudo-participation and tokenism.
In all three cases, “participation” involves little or no decision-making power for those involved. The participants are more interested in maintaining their power than in sharing it. The goal is to preserve the status quo and avoid change. Participation occurs for one’s own benefit rather than for the good of others. This is often driven by formal requirements that must be met, such as participation being a condition for applying for external funding. Such demands can turn participation into a superficial gesture, used to create the appearance of diversity, inclusion, or participation, but with the effect of reinforcing one’s own agenda. For this reason, pseudo-participation, token participation, and instrumentalization are forms of epistemic violence.
For those affected, pseudo-participation, instrumentalization, and tokenism can be highly distressing (Carr, 2019; Rose, 2019; Rose, 2023; Russo, 2018). People quickly recognize when they are not being heard or are unable to take part in decision-making. Some feel pushed into stereotypical roles, such as that of the “poster-victim,” while others describe a sense of dehumanization. They notice when they are reduced to their lived experience, with little to no interest in their many other forms of knowledge and aspects of identity. They also recognize when their experiential knowledge becomes a commodity that is used when convenient and just as quickly discarded when no longer needed.
Part of the distressing experiences of those affected relates to storytelling: sharing one’s own stories of crisis or recovery is often presented at conferences, in books, and in research as a way of counteracting the dehumanization of those affected and the silencing of their voices (→ Silencing). However, the stories themselves and the act of storytelling can also become a commodity. Stories can be stolen and appropriated for other purposes (→ Appropriation). I have often witnessed situations in which an affected person shares their story at a conference, without anything tangible resulting from it. Terms such as “disability tourism” (Grey, 2016) or (trigger warning!) “patient porn” (Costa et al., 2012) highlight how this lack of meaningful change can be experienced by those involved. Who, ultimately, benefits from the telling of a story?
In the United Kingdom, where collaborative research has been conducted for much longer, there have already been alarming reports regarding pseudo-participation and tokenistic involvement: “… after 20 years, PPI (Patient and Public Involvement) functions primarily as a tokenistic, competitive tool that positions patients and users as agents of the industrial psychiatry research complex” (Carr 2019). From my own experience, I know that pseudo-participation is, to a certain extent, almost impossible to avoid. We have analysed various cases (Beeker et al., 2021; Glück & von Peter, 2023; Ziegenhagen et al., 2025) that show how quickly it can happen that decisions made by team members – in our case, always those with lived experience of psychiatry – are not implemented, despite careful planning and structuring of our collaboration. So why get involved at all?
Sometimes pseudo-participation is easy to expose, but often it hides within the complex, everyday processes of collaborative work and can only be identified in retrospect. This is frustrating. It is also frustrating that pseudo-participation is not entirely within our own control. Research in an academic context directs knowledge, imposes a (scientific) agenda upon it, and thereby sometimes alters it beyond recognition. One reason for this lies in the pressure to generate value in academic knowledge production, which tends to lead to the commodification and domestication of knowledge, of all forms of knowledge, not only experiential knowledge. A respected colleague describes the risks here as a “parasitic position” (AIAS, 2026) of academic researchers, meaning the exploitation of knowledge for one’s own benefit.
What can be done? In collaborative research, we can remain alert and critically reflect on the processes and impacts of our own work (→ Criticism). Effective decision-making power depends on a potentially effective proportional representation: in our Co-Lab, an average of six to ten researchers with psychiatric experience and two to four without such experience work together, and yet decisions often go against the first group – frequently due to an imbalance of resources. After all, members of the second group repeatedly express that they feel out of place in collaborative projects, that their knowledge counts for nothing there, or is insufficient to make a real contribution – which I interpret as a positive sign of a potentially balanced power dynamic. We urgently need further strategies and techniques, and significantly more resources than are often available in regular research, to effectively design collaborative and participatory decision-making processes.
Beeker, T., Glück, R. K., Ziegenhagen, J., Göppert, L., Jänchen, P., Krispin, H., Schwarz, J. & von Peter, S. (2021): Designed to clash? Reflecting on the practical, personal, and structural challenges of collaborative research in psychiatry. Frontiers in Psychiatry, 12, 701312. https://doi.org/10.3389/fpsyt.2021.701312
Carr, S. (2019): ‘I am not your nutter’: A personal reflection on commodification and comradeship in service user and survivor research. Disability & Society, 34(7–8), S. 1140–1153. https://doi.org/10.1080/09687599.2019.1608424
Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D. & Church, K. (2012): “Recovering our stories”: A small act of resistance. Studies in Social Justice, 6(1), S. 85–101.
Grey, F. (2016): Benevolent othering: Speaking positively about mental health service users. Philosophy, Psychiatry, & Psychology, 23(3–4), S. 241–251. https://doi.org/10.1353/ppp.2016.0025
Glück, R.K. & von Peter, S. (2023). Lost in Collaboration. Verfügbar: https://psychiatrie-verlag.de/product/rosakate-glueck-von-peter-s-lost-in-collaboration-gratisartikel-aus-si-1-2023 (Zugang: 19. März 2026).
Aarhus Institut of Advanced Studies (AIAS). In the spirit of friendship: Interdisciplinary perspectives on friendship (2026) Aarhus University. Verfügbar: https://aias.au.dk/events/show/artikel/in-the-spirit-of-friendship-interdisciplinary-perspectives-on-friendship (Zugang: 19. März 2026).
Rose, D. (2018): Participatory research: Real or imagined. Social Psychiatry and Psychiatric Epidemiology, 53(8), S. 765–771. https://doi.org/10.1007/s00127-018-1549-3
Rose, D. (2019): Participatory research and power. Integration and Implementation Insights.
Russo, J. (2023): Psychiatrization, assertions of epistemic justice, and the question of agency. Frontiers in Sociology. https://doi.org/10.3389/fsoc.2023.1092298
Ziegenhagen, J., Krämer, U. M., Fehler, G., Perez, G. R., Schmidt, D., Cubellis, L., Küsel, M. & von Peter, S. (2025): Difference and subordination – the epistemic struggles of collaborative knowledge production in the field of mental health. Research
Involvement and Engagement, 11(1), 46. https://doi.org/10.1186/s40900-025-00720-4
Sebastian von Peter
R
Reward and Punishment
In our research, it’s like this: If certain conditions are met, what we do is allowed to be called participation. If even more conditions are met, it can be called something else – collaboration. Research institutions receive funding for this research.
It’s similar in psychiatry: It’s about behavior. I am supposed to conform, be “adherent” (meaning, for example, to go along with another opinion) or be “compliant” (meaning to agree). If I manage to do that, they leave me be; then I am not being punished. Or the punishment is already anticipated: the fact that I have to do something the way others demand it, is already part of it.
I think that what happens in our research on psychiatry and what happens in psychiatry itself, follow the same pattern. It is a principle: If X is given, then Y follows.
X is a condition; Y is a reward or a punishment.
When I receive such a reward, I know that punishment is also possible. The reward also depends on my behavior in a way that others consider to be correct.
This is how I understand it: The way a person is, is supposedly not right.
I doubt that this is a solution to the problems for which people are in psychiatry.
And I doubt that what we do in research is helpful – because it’s the same principle.
Mara Lamprecht
Risks and Resources: “I’m About to Go Mad!”
Mental health issues are often triggered by stress, with trauma being a particularly significant factor due to its long-lasting impact on an individual’s life. Coping with such experiences requires considerable effort and resources. These challenges also affect researchers who draw on their own lived experiences. Engaging with topics related to psychiatric conditions can be especially demanding, as certain discussions, findings, or debates may reopen past wounds. This is particularly the case when the research topic is closely connected to deeply personal experiences. In some instances, even a single word, a sentence in a text, or a controversial statement can act as a trigger. As a result, it may become necessary to pause a project or withdraw from a conversation to allow time for processing and recovery. Supporting these processes requires the provision of adequate resources. Research sponsors and institutions have a responsibility to provide appropriate support structures, including opportunities for dialogue and professional guidance. This process takes time. However, deadline pressure, limited opportunities for exchange, and a lack of consideration or solidarity within a research team can significantly increase the strain. Under such conditions, individuals may feel compelled to push themselves beyond their limits to complete their work. This can lead to serious crises, where the work itself becomes a threat to health, to safety, and potentially even to life. If it is not possible to create a working environment in which stress is adequately minimized, a critical question arises: to what extent is it acceptable for collaboratively produced results to be used, disseminated, and potentially exploited, while the associated risks remain privatized and borne by those directly involved? This issue is particularly acute for individuals who, in the absence of such work, might otherwise experience substantially lower levels of stress in their daily lives.
autonomous author
S
Solidarity
Solidarity,
we can’t do it without it.
Solidarity with and among those affected by psychiatry and those who have experienced crisis.
Solidarity as a bridge to and from those who are not affected.
Solidarity as something greater than ourselves.
Solidarity as an immediate connection.
Solidarity as a reminder that we have more in common than what divides us.
Solidarity as something magical that defies the logic of exploitation.
Solidarity as an inner act of collecting flowers.
Solidarity as a lived utopia.
Solidarity as a response to fragmentation
The only requirement: You must truly invite them; this also means learning to let go, to step back, and to surrender. It can be painful, but it often leads to contentment. Solidarity and contentment, after all, regularly meet for coffee or hot chocolate and cake.
Let’s take care of each other so we can be dangerous together.
rosa* Kato Glück
Social desirability
I don’t want the other person to give a socially desirable answer.
I don’t want the other person to give me the answer I want.
>So I do want them to give me the answer I want.
I don’t want the other person to answer the way they do just for me.
I want the other person to respond the way they would for their own sake.
>But I do want the other person to respond to me.
I’m not supposed to influence them.
I’m not supposed to have influence.
>That’s not how it works.
Mara Lamprecht
T
Trauma
(ancient Greek: wound/injury),
Triggers unexpectedly
Running on sensory overload
Alone in pain
Unbearably consuming
Makes you feel powerless
Afraid of repetition
Wounded, but still here.
rosa* Kato Glück
V
Vulnerability
Vulnerability describes a person’s (social) condition and is relational in nature (i.e., in relation to something or someone else), because “vulnerability does not exist in and of itself” (Dederich & Zirfas 2022: 4). Personally, for example, I am vulnerable as a Mad, Queer, trans* person. As such, this does not hurt me, but in my interactions with others, it makes me vulnerable.
Vulnerability is characterized by a remarkable contradiction: on one hand, it describes a common human characteristic, yet it is experienced very differently and is distributed extremely unequally, as Alyson Cole analyzes in the book “All of Us Are Vulnerable, But Some Are More Vulnerable than Others” (2016). Vulnerability arises within a cultural, historical, and social context (Dederich & Zirfas 2022) and, for individuals, entails a higher risk of being exposed to disadvantage, discrimination, and violence. Vulnerability refers to an individual’s potential to be harmed. When we conduct collaborative research, the Mad Researchers take on a higher risk of being harmed. This vulnerability is amplified by our engagement with topics such as pathologization, disempowerment, and other forms of psychiatric compulsion and violence.
In addition to this higher risk, some theorists, such as Butler, also consider vulnerability to be a site of knowledge acquisition, an “epistemological frame” (Butler 2009: 1). In the English-speaking discourse, debates regarding agency (power/capacity to act), identity, and oppression have been ongoing for some time (including within the framework of Vulnerability Studies). In order to analyze the power relations surrounding vulnerability more comprehensively, it is necessary to turn our attention to the moment of fragility (→ Fragility) and therefore to reflect on privileges.
Confronting privilege creates the foundation for a power-critical and responsible collaboration. Within our social system, every person is categorized according to various characteristics such as gender, class, or disability (and many others), and depending on their position, they hold more or less power. Engaging with these complex dynamics is demanding and sometimes painful, yet it also paves the way for empowerment, meaning self-determination and agency, as well as potential allyship (→ Allyship).
Being vulnerable means depending on one another, as Butler explains: “[…] this condition of primary vulnerability of being given over to the touch of the other” (Butler 2004: 24). In order for us to feel as safe as possible when we show our vulnerability, we need space for discussion and reflection, but also openness to criticism and the needs of others. Being vulnerable is not a weakness, but an opportunity and a space where we should be able to treat one another with tenderness.
Butler, Judith (2004): Undoing Gender. New York, London: Routledge.
Butler, Judith (2009): Frames of War: When Is Life Grievable? London: Verso.
Cole, Alyson (2016): All of Us Are Vulnerable, But Some Are More Vulnerable than Others: The Political Ambiguity of Vulnerability Studies, an Ambivalent Critique. In: Critical Horizons, 17(2), 260–277. https://doi.org/10.1080/14409917.2016.1153896
Dederich, Markus; Zirfas, Jörg (2022): Glossar der Vulnerabilität. Wiesbaden: Springer VS.
Polychroniou, Ariadni (2022): Towards a Radical Feminist Resignification of Vulnerability: A Critical Juxtaposition of Judith Butler’s Post-Structuralist Philosophy and Martha Fineman’s Legal Theory. In: Redescriptions: Political Thought, Conceptual History and Feminist Theory 25(2), 113–136. DOI: https://doi. org/10.33134/rds.379
rosa* Kato Glück
rosa* Kato Glück has been working for eight years on various research projects at the MHB focusing on healthcare research and sanism. They have personal experience with mental illness and psychiatry and a wide-ranging passion for language and communication.
Sebastian von Peter is constantly amazed at how accurately the knowledge and perspectives of people who have been in psychiatric care capture the conditions there. Over the course of his career as a researcher, he has come to realize that insights into psychiatry fall short if they rely exclusively on psychiatric-medical knowledge. Despite working in psychiatry himself, Sebastian sometimes wonders whether this institution can still be saved.
autonomous author is a research associate at the MHB and wants to ensure that the knowledge of people receiving medical treatment can be utilized, that their rights are protected, and that their needs are met. She speaks from the perspective of someone directly affected and contributes her practical experience.
Mara Lamprecht’s real name is actually different, and she has been working in psychiatric health services research at the MHB since 2017 as a peer, based on her experience as a former psychiatric patient. She often sees the role of psychiatry within society as conflicting with her efforts to bring about positive change for other people affected by mental illness.
Timo Beeker is a psychiatrist who, in addition to his work with a home-based treatment team, has been conducting critical research on psychiatry for many years. Besides participatory-collaborative work, he is particularly interested in researching the expansionist tendencies of psychiatry and what can be done to prevent a society from becoming increasingly psychiatrized.
Daniela Schmidt has lived with experience of psychiatry since 1999 and has been working incognito in various research positions as a theologian and Germanist, drawing on this experience. In her free time, she was actively involved with the Trialogue in Potsdam. Since 2020, she has been working as a peer researcher at the MHB. What was previously kept hidden in her professional life is now an essential part of her work.
Guillermo Ruiz-Pérez has been working on collaborative participatory projects at the MHB since 2020. His work aims to shape a form of psychiatry in which responsibility is not delegated or assumed in a paternalistic way but is shared by all participants. It focuses on the effort to overcome structures that disempower and patronize, replacing them with spaces where autonomy, participation, and shared decision-making are possible.