The Routledge International Handbook of Mad Studies

Peter Beresford, Jasna Russo, Peter Beresford, Jasna Russo

• Publisher: Routledge
• Year: 2021
• ISBN:
  9780429878640
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

By drawing broadly on international thinking and experience, this book offers a critical exploration of Mad Studies and advances its theory and practice.

Comprised of 34 chapters written by international leading experts, activists and academics, this handbook introduces and advances Mad Studies, as well as exploring resistance and criticism, and clarifying its history, ideas, what it is, and what it can offer. It presents examples of mad studies in action, covering initiatives that have been taken, their achievements and what can be learned from them. In addition to sharing research findings and evidence, the book offers examples and insights for advancing understandings of experiences of madness and distress from the perspectives of those who have (had) those experiences, and also explores ways of supporting people oppressed by conventional understandings and systems.

This book will be of interest to all scholars and students of Mad Studies, disability studies, sociology, socio- legal studies, mental health and medicine more generally.

Part 1 Mad Studies and political organising of people with psychiatric experience

DOI: 10.4324/9780429465444-2

1The international foundations of Mad StudiesKnowledge generated in collective action

Jasna Russo

DOI: 10.4324/9780429465444-3

Introduction

Besides contributing my own experiences and reflections on international activism in the mental health service user/psychiatric survivor movement¹ through this chapter, I have also attempted to bridge the other contributions in this first section of the book. As editors, we want to demonstrate the centrality of political organizing of people with psychiatric experience in the emergence and further development of Mad Studies. The chapters that follow document different starting points and various directions of advocacy and political struggles of people who come together and organize themselves most often under the name of survivors of psychiatry or people with psychosocial disabilities. These accounts chart a non-unified, diverse movement and provide a range of standpoints. Operating under different socio-political circumstances, emerging at different points in time and with different priorities and terminologies – what all organizations and networks clearly have in common is their struggle for human rights. But there is also another, less explored aspect that I wish to focus on: the process of joint knowledge making that takes place alongside mutual support and political action. This way of generating knowledge is neither purposefully initiated nor represents an end in itself. Similar processes transpire in emancipatory and liberation movements that preceded the formation of Women, Black, Queer or Disability Studies. The constantly expanding and diversifying knowledge base realized by people who come together around a specific social justice issue is also key to understanding Mad Studies as activist scholarship that started long before the term Mad Studies was coined. The vast and collective body of knowledge assembled by people deemed mad themselves endures, deepens and grows regardless of its official recognition. Or as Brenda LeFrançois puts it:

Mad Studies […] takes place within or without academia, but never without community.

(2016: v)

I would add that Mad Studies also takes place with or without being named Mad Studies.

In this chapter, I explore some features of knowledge formation that I think are foundational for Mad Studies. In the first step, I describe the entry points and the geographies of the organizations I personally joined and my own processes of becoming that were taking place within and outside of those organizations. The remainder of this chapter describes the way I see the link between Mad Studies and our diverse political organizing and why I think that Mad Studies can (and should) do what our movements have not been able to.

Movements as a place to be

It is commonly being said that movements are made up of people. Less is being said about the ways in which movements also make us as people. That includes both those great as well as those not so great experiences and encounters which shape our background and become part of who we are. Like many other activist-authors I cannot write about our movement without writing about myself and my own commitment. The intimate link between our own lives and our political work and the impossibility to separate the two seems to be at the heart of all social movements as powerfully described by Alicia Garza, a co-founder of Black Lives Matter:

We inherit movements. We recommit to them over and over again, even when they break our hearts because they are essential to our survival.

(2020: xiii)

The first political group I joined was a feminist group at the Student Cultural Center in Belgrade, my home town in former Yugoslavia. I was 22 and my first forced psychiatric hospitalization and treatment were already behind me. As this was the only women’s group in the city at that time, the obvious focus of our work was violence against women. And even though we were welcome to share our own experiences under the slogan ‘personal is political’ I could only partially share mine. The mysteries and chaos of ‘personal’ somehow could not fit the clarity and straightforwardness of the ‘political’. The prevailing activist narrative did not really leave room for the option of becoming broken or losing one’s mind. This was acceptable for those ‘other’ women that we were supposed to support in sisterhood or theorize about. But the unspoken expectations of the ‘feminist self’ quickly made me understand that my own account of violence needed to be limited to a certain point and that I should keep its real ending for myself. There was some understanding of psychiatry as part of ‘patriarchal’ regime, but the actual personal experience of being diagnosed and forcibly treated was something better left undisclosed. Years later in the course of my employment as a counsellor in a shelter for women and children survivors of domestic violence in Germany, I faced similar impossibilities and saw how ‘political’ can edit or simply filter out parts of ‘personal’ that overwhelm and upset the ‘cause’ for which we have come together. I do not mean to undermine the sense of belonging and purpose that I found in women’s groups and organizations, but often I felt limits and longings wonderfully described by Dorothy Allison when she writes about sexual abuse:

Behind the story I tell is the one I don’t. Behind the story you hear is the one I wish I could make you hear.

(1995: 39)

Discovering and joining the psychiatric survivor movement came as a huge relief to me. Nothing seemed so mysterious and chaotic anymore that it couldn’t be shared, understood but also tolerated and sometimes even carried together. That instant easiness and normality that I felt – if I may at all use such word in this context – opened up worlds for me. The first organization I joined was the European Network of (ex)Users and Survivors of Psychiatry that I am still an individual member of. What followed are almost 30 years of meeting different people, having all kinds of encounters and exchanges, including very intense and close ones. Even though constrained to one continent – the European Network was a meeting point of considerable differences in the early 1990s, probably more than today. One difference that I vividly remember was between Western and Eastern Europe, which then gradually dissolved with the political and economic changes that followed. The fact that my entry point into the movement was not local meant that from the very beginning I could see my personal experiences in a much broader framework. I didn’t have a cultural context to share and not even a common language. After all these years, the situation remained pretty much the same for me, meaning that I am always in a position to focus on other connections, sometimes very far away from historical and other circumstances in which I grew up. I can’t say that it was difficult to find such connections internationally. Intra-nationally though, things felt rather different. My immigration to Berlin accompanied by the struggle for residence and work permit turned me into a second-class citizen. In local survivor organizations I found myself part of an almost non-existent minority group within dominant German culture and among native speakers. I could share my experiences of madness and psychiatry but not the kind of acute existential struggles that I was going through. Those struggles lasted for several years and got their happy ending at some point, but my ‘comrades’ could not really relate to how that situation was affecting my mental and emotional state. In this matter I received far more understanding and support from my colleagues in the previously mentioned shelter where I worked. They didn’t know about my psychiatric history, but they knew the troubles I was going through as the majority were migrants themselves. Obviously, no matter how politicized each of these spaces was, there were always unspoken norms that encircled the realm of familiar and imaginable and ruled communication. I will later come back to this phenomenon and its implications for Mad Studies.

My involvement in the German survivor movement continues in different ways and with some breaks, but international settings still remain the most natural and comfortable for me. It is almost as if places without a particular geographical location offer me more grounding and feel more like actual places to me. Perhaps this comes from the coincidence that my discovery of the survivor movement and joining the European Network happened soon after the war broke out in my country. In the course of my first years as a member of the Network, Yugoslavia was falling apart while I was gradually building my psychiatry-free life elsewhere. Looking backwards, I can clearly see how international survivor activism actually offered me a home and helped me build that life. More than simply giving me somewhere to belong to when I was kind of displaced in every sense, the survivor movement also became the most important learning place for me. That ongoing learning is unlike any education I have received so far, including my latest degree in the field of Mad Studies. Yet certainly, things were not only cosy and rosy and this chapter will not turn into a love letter to the survivor movement. There were too many arguments, hurts, divides and bitter lessons learned as well.

My experiences of ‘international’ are confined to the organizations in the Global North. Here I do not mean personal contacts only but also published sources and older movement documents from those parts of the world. I have had encounters with activists from Asia, Africa and Latin America, but to a much lesser extent and much more through learning about their work than through actually working and thinking together. It seems to me that despite an always growing number of means to communicate and overcome geographical distance we are not really coming closer. Sometimes it feels that we are even falling further apart. When I read how Alicia Garza says that “[m]ovements are the story of how we’ve come together when we’ve come apart” (2020: xiv) – I wish our movement were such story. On local and sometimes country levels – it might be the case; globally it isn’t, with the exception of a few episodes of successful international action. This is of course just the way I see it. Coming together across geographical and other borders takes time, above all to listen and get to know each other and understand each other’s realities, if possible without applying one’s own cultural, political and other lenses. That is easier said than done in the speedy and profoundly divided world we inhabit.

But even though being aware of many limits and weaknesses of our political organizing at all levels, I cannot objectively judge the movement that has given me a home for many years or distance myself from it by any kind of rational decision. Distance grows with time and by getting closer to people whom the movement didn’t really offer a home and by understanding why that was. Distance also grows as I keep finding other connections and more ways to be and intervene in the world. Still, I cannot write about survivor activism from an unengaged place or as if it weren’t part of myself. I can also not criticize it as if it were a foreign body or without seeing my own doings as part of its many failures. To me, Mad Studies means a continuation of activism and political work that deepens and shifts that work to another level and entails a valuable chance to address the limits and failures inherent in many social movements. Mad Studies has the potential to stop us from falling further apart and help us connect on a different ground.

Overcoming single-issue politics

The most common failure of many social movements is their single-issue struggle, as famously expressed by Audre Lorde (1982). Here, the survivor movement is no exception. One reason for sure is ‘strategic essentialism’ (Voronka, 2016) exercised in many organizations by virtue of pushing forward one type of discrimination and oppression at the cost of all others. As we know, identities built around one form of injustice and the enactment of a collective self-definition are powerful emancipatory acts that can become a force to drive social change. But as we also know, such collective identities inevitably create a deadlock: they are never big or suitable enough to capture the many layers of social experience and therefore prove incapable of addressing them. The limitations inherent to identity politics commonly result in agendas that appeal to and are owned by the dominant groups within movements. Social justice movements can become places of injustice that create their own ‘others’. The second-waves of the feminist and the disability movements made that clear. Mad Studies holds the potential of being such a second wave, hopefully strong enough to revise and enhance the agenda of political organizing that began in response to psychiatric oppression. As contributions in this section show, that oppression operates differently across the globe: in places where psychiatry is just one among a number of institutions of colonial heritage, the movements unite around other, more pressing issues and kick off with broader agendas for change (see TCI Asia Pacific² as well as contributions from Bhargavi Davar, Brenda Valdivia and Daniel Mwesigwa Iga in this section). Mad Studies opens up avenues to contextualize and de-center psychiatric oppression and avoid dead-end roads of identity politics.

Having said this – and even with the ‘mad’ adjective – Mad Studies does not imply embracing mad identity. For many contributors in this book and beyond, including myself – identifying as mad is not an option. It is important to remember this distinction for want of a better word and in the meantime not to confuse Mad Studies with the Mad Pride movement (see Chapters 33 and 34 by Prateeksha Sharma and Colin King for deeper consideration of this critical issue). The human rights activist and author, Tina Minkowitz, points to the traps of ontologizing our experiences of discrimination or in other words – turning those experiences into who we are:

Paradoxically in naming the discrimination and calling attention to the needs there is a risk of a discriminatory, violent, and objectifying response, an essentializing of our identity that diminishes our full humanity. This is the challenge faced by every equality seeking movement and it is not the end of the story but, rather, is an ongoing call for humanity to grapple with injustice.

(Min...