More than just mad: Survivors as knowers

Tamsin Walker shares some ideas she is developing in her PhD about the opportunities that zines offer mental health system survivors to articulate and share knowledge.

 

How survivor knowledge is constrained by services

cartoon image of Tamsin Walker

Mental health system survivors are often seen only in terms of our madness. Being seen as mad is linked to prejudicial stereotypes about our competence and sincerity. If we are perceived not to be competent or sincere then the knowledge we share won’t be taken on or valued. When survivors share our knowledge, it is often seen as untrustworthy as we are seen as not having authority..

 

Authors increasingly refer to this process as testimonial injustice, after Miranda Fricker (2007). Fricker writes about testimonial injustice as a type of epistemic injustice, which relates to what is or can be known. Kristie Dotson (2012) might call this type of epistemic injustice first order epistemic injustice, a form of injustice which can be addressed through individuals making changes, without the need for wider systematic change.

 

 

There is a lot of research about this type of epistemic injustice happening within mental health services, but it happens outside the psychiatric system too. In mental health services, survivors are disadvantaged by the power dynamics between us and professionals. Psy professionals control who is invited to share knowledge, what knowledge can be shared (and in which way), and how information is interpreted and recorded. This directly affects what can (and can’t) be known.

 

Psy professionals also make decisions about whether survivors can receive care, and what care we might receive. In many cases they can even control our physical liberty via practices like sectioning, restraint and seclusion. Because survivors are aware of this, we often don’t share knowledge which we think professionals won’t welcome. This includes knowledge that is critical of psy professionals or the mental health system.

 

 

Survivors are also disadvantaged by the tools with which we are expected to make sense of and articulate our experiences. This includes being expected to use language and concepts that were created by and for psy professionals, not survivors ourselves. This is often referred to as hermeneutic injustice. Dotson (2012) calls this second order epistemic injustice which needs to be addressed through changing structures and frameworks, for example the socio epistemic conditions and values which foster hermeneutic injustice. Being disadvantaged by the tools with which we are expected to make sense of and articulate our experiences also includes not being able to use creative and sensual sense-making tools.

 

 

Not being able to make use of creative and sensual sense-making processes disadvantages survivors as they can help us articulate understandings based on experience and perception instead of relying on pre-existing concepts and ideas (Carel et al. 2012). It is also particularly disadvantages to survivors who may be more likely to think in pictures. For example, Temple Grandin (2022) suggested that people who are neurodivergent often think in pictures (and many neurodivergent people end up in the mental health system). If you think about it, we know some survivors benefit from using these types of processes to reflect on and articulate our experiences – after all, that’s why we have art, music and drama therapy.

 

 

Similarly, survivors are disadvantaged by the expectation that we articulate and share our knowledge in a single cohesive linear form. Richard Ingram (2016) has written about the limitations of the narrative form to his own process of thinking and relaying his (mad) thoughts. Yet experiences of trauma and dissociation (which are common amongst survivors) are more easily articulated and shared using non-linear forms. If some people think in patterns and spatial relationships, having to articulate and share knowledge in a single cohesive linear form is unhelpful.

 

 

Confidence in our ability to make sense of our experiences can be diminished through having to use sense-making tools that don’t work for us and being told that we aren’t capable of making sense of our experiences. Sometimes this lack of epistemic confidence can itself become a barrier to reflecting on and articulating experiences and sharing these. For some survivors these epistemic injustices are likely to have been experienced prior to contact with the mental health system and may even be the cause of our madness/distress. If this is the case, it seems unsurprising that we may internalise the perception that we cannot be trusted to know or make sense of our experiences.

 

 

 

How zines might benefit survivors

Zines offer offers lots of opportunities for survivors to make sense of and articulate our experiences in different ways. When we create and share zines we may not be perceived as entirely or only mad. For example, when people read a zine the first thing in their head is probably not “is this person mad?”. Even if readers do hold prejudicial stereotypes about madness, our ability to know things would not be perceived only through this lens. Therefore, it’s likely to affect how our knowledge is received by others.

 

Instead of a person’s authority being reduced to their mental health status and negative assumptions about this, zinesters tend to gain the trust of their readers through creating a sense of connection, intimacy and community. Alison Piepmeier (2008) has described zine cultures as being places where physical communication and connection is valued. She suggested that the physical and handmade qualities of zines invite readers to read them and this creates a sense of intimacy and connection between zinesters and zine readers.

 

I also think there is a culture of drawing on a different kind of authority, what might be called vernacular authority. Vernacular authority is authority cultivated by appealing to a sense of social trust that is positioned as existing outside formal institutions. In other words, survivor’s zines may be trusted and treated as having authority – precisely because they aren’t created by and for psy institutions and don’t rely on concepts and language created by and for professionals.

 

 

Zines are self-published and can be made with really basic resources that most of us have access to (e.g. a pen and a piece of paper). You don’t have to be invited to create and share a zine. What you articulate and share in and via zines is not controlled by anyone other than yourself. This means that unlike in the psy system, survivors can choose the topic and the tone, as well as how we structure, make sense of and share what we know.

 

 

The structure of the psy system is one in which positions of power, status and financial gain are linked with having access to and making use of knowledge made by and for psy professionals. In contrast, zines have been linked to a culture of exchange and non-commercialisation and are not about gaining money or status. People aren’t expected to draw conclusions in zines, they are a process through which people can interact more than a product. Therefore, zines can reassure us that it’s ok to share knowledge-making in process.

 

Whilst the psy system prioritises objectivity and universalism, zines cultures tend to prioritise subjectivity and particularism. Zines are often based on individual’s specific complex and even contradictory experiences which it may not be possible to generalise from. Perzines (zines about a persons lived experiences) are the most common type of zine. They expose us to (or remind us of) the idea that knowledge based on lived experience has value and that it can be contradictory or complex.

 

 

In addition, zines are shared between communities of peers. When creating and sharing a zine, we don’t need to worry that being critical of psy professionals or that the psy system will negatively affect how we are treated in services. We are exposed to concepts, language and ideas that are often developed by other survivors. We can then use these to make sense of and articulate our own experiences. We are also exposed to the idea that we can articulate our experiences using a variety of structures and processes and this might be valued (within the zine community at least).

 

As a sense-making process, zine making may be particularly useful for survivors. Zines have visual and non-linear qualities both of which may be useful for survivors when we are trying to reflect on and articulate our experiences. This is because many of us are more likely to think visually or in terms of non-linear connections and because our experiences/experiencing may be better articulated visually and/or in non-linear forms. Not only is being able to use these forms beneficial to survivors, but when we do so we demonstrate to others that visual and non-linear forms are available and have value too.

 

 

As a form of communication, zines may change how knowledge is received. Zines often have non-linear, visual art based and sculptural qualities and these they may affect and actively engage readers and cause them to receive knowledge in more embodied ways. For example, readers may have to search on the page for information, they may feel confused or disrupted by non-linear texts, or they may have to make decisions about the order in which a zine is read or engaged with.

 


Conclusion

 

Making and sharing zines is very different from trying to articulate and share knowledge in services because it doesn’t involve relying on psy professionals or being vulnerable to their actions and decisions. This means survivors can (and do) share knowledge and understandings in zines that they wouldn’t or can’t share in the psy system. Having access to zines can mean having access to a space in which survivor knowledge is valued and survivors are seen as valid knowers. It can also mean having access to a space in which visual and non-linear knowledge, which is better suited to some survivors, is valued. This can enable survivors to see ourselves as capable of making sense of our experiences which, in turn, can enable us to share this understanding with others. Therefore, zines give survivors opportunities to be perceived and treated as capable knowers, and to see and treat ourselves as such. I think this is hugely advantageous for survivors.

 


Tamsin Walker is the PhD researcher on the Madzines project. She also makes zines, picture writing and graphic illustrations (like the ones here). This post is based on a talk she gave at a Madzines seminar hosted by  the Institute for Planetary Resilience and Community Transformation (PACT) – UCLan

 

Leave a comment

name*

email* (not published)

website