‘Mad’, Mad studies and advancing inclusive resistance

Abstract

‘Mad’ is a contentious term with which many service users/survivors feel uncomfortable. Yet it is the framework for a major new user-led challenge to bio-medical thinking about distress – Mad Studies – which is coming in for criticism for this and other identified shortcomings. Why has it adopted this controversial, conflict-ridden title? This article will explore current criticisms and raise the question of what Mad Studies’ strategy should be to address them for the future?

Keywords:

• Mad
• Mad studies
• demedicalising
• mental illness
• terminology
• survivor-led
• addressing diversity

Most discussion about mental distress continues to be framed in biomedical terms as ‘mental illness’/‘disorder’. This is not only true of dominant professional and political debates, but also of much discussion from mental health service users – even where that challenges the bio-medical direction of prevailing policy and thinking. While there is some tendency to use euphemisms like ‘mental health’ and ‘mental health problems’, this discourse is still essentially imprisoned within a mental health paradigm.

Yet recently a new discourse has developed, which while it may have links with previous challenges to the psychiatric system and understanding, makes a strong claim to its own identity – Mad Studies; a meld of activism and intellectual activity originating in Canada but now increasingly emerging as an international movement (Le Francois, Menzies, and Reaume 2013; Beresford and Russo 2016). It is helpfully defined as ‘a field of scholarship, theory, and activism about the lived experiences, history, cultures, and politics about people who may identify as Mad, mentally ill, psychiatric survivors, consumers, service users, patients, neurodiverse, and disabled’ (Castrodale 2015). Mad studies originated from consumer/survivor movements. It rejects a bio-medical approach to the domain widely known as ‘mental illness’ or ‘mental health’ and substitutes instead a framework of ‘madness’.

This positioning of a radical user-led initiative within a framework of madness, a term that for many, including many survivors, is unreclaimable, is the starting point for this discussion. It can seem at least contrary, at worst unhelpful, so why has it been done?

The emergence of Mad Studies makes the task of addressing the terminology and issue of ‘mad’ and ‘madness’ especially urgent. This isn’t the first time that progressive intentions have been loaded onto the language of madness; the international movement for Mad Pride originating in the 1990s did so. However it is the responsibility of survivor activists like myself to work hard to make sense of this terminology and see if it truly can be put to emancipatory purposes and become anything other than one of those many terms of abuse that we have had to get used to having applied to us as mental health service users/survivors. Used abusively it has become such a routine part of our language that it creates little of the disturbance that other pejorative terms in other areas of identity can be expected to cause. Just think of any of the devaluing words applied to women, gay and trans, disabled or BME people now being used in routine conversation, newspaper headlines and even on children’s TV and then wonder what is so different about ‘mad’ that such opprobrium doesn’t seem to apply to it and continues in all these contexts.

First let’s explore the evidence about such language use. Supported by the Joseph Rowntree Foundation as survivor researchers, we carried out two small scale research projects, to explore with survivors how they felt mental health issues were understood in society and how they understood them. This highlighted that most felt a biomedical model dominated both public and professional thinking and was stigmatizing and unhelpful. There was much stronger support for a more social approach to understanding distress. Many survivors made connections between their distress and broader social causes and consequences, including poverty, isolation and stigma. Despite these widespread concerns about the medical model and its associated terminology, service users surveyed were still divided about terms like ‘mad’ and ‘madness’. Some thought they could be reclaimed, reflected their experience and were empowering. Others expressed strong feelings they had too many negative associations. Most had reservations about the terms (Beresford, Nettle, and Perring 2009; Beresford et al. 2016). These included that such terminology encouraged the romanticisation of distress; had no clear or agreed meanings and could create division.

However survivors’ inability to find a new language for mental distress not tied to a biomedical model, can also be seen as a superficial expression of a much deeper problem; the movemnt’s failure to unite around any kind of counter-philosophy. Here an important distinction needs to be drawn between the survivors’ and disabled people’s movement. From its earliest days, the latter had sought to develop coherent philosophy and theory as a basis for thought and action. This rejected both the language and concepts of medicalised individual disability with a new social model of disability and philosophy of independent living. Until the emergence of Mad Studies there was no similar development in the survivor movement. This is not to say that it did not identify key principles for collective action, like speaking and acting for themselves, being treated with equality, developing user-led schemes for support and highlighting the social relations of distress. But there was no clear alternative model and indeed as our research evidenced, some service users were particularly wary of ditching one overarching philosophy to accede to another.

Mad Studies can be seen as the first survivor-led movement which has sought to develop a strong philosophical and theoretical base. This was evident in its founding book and is a feature of the growing debates and literature now associated with it. But Mad Studies faces a conundrum. If its advocates want to disassociate it from a biomedical model, then understandably they must reject medicalised terminology. Understandably they have turned to ‘mad’ because it is a concept with international currency that has historically been used to describe the constellation of behaviours, experiences, feelings and issues that nineteenth century science onwards has subsumed as ‘mental disorder’. They encourage us to connect with the wider world and explore different perspectives on it rather than focus on ‘individual abnormality’ (for example, Netchitailova 2019). ‘Mad’ is a frightening word, but this is because madness and being driven to madness can be frightening. At the same time ‘mad’ is a word that sparks fear, threat and danger to many mental health service users/survivors because of its continued perjorative use against them.

Our language for extremities of experience and emotion is inadequate. We could perhaps try and develop a new language to match new thinking. But as one survivor said, whatever language you use the predominantly negative way in which mental distress is understood in society, catches up with you:

I think as soon as you say I’ve got a mental health condition madness is straight in their heads isn’t it (Beresford et al 2016, p28).

It certainly seems to be a case of a rose is a rose by any other name – we may change the words, but mean the same.

All new movements can expect to come in for challenge and criticism. What’s interesting about Mad Studies is how quickly this has happened and that critics have included survivor activists, allies and researchers as well as those embedded in the ‘psy-system’.

The former seem to see its nomenclature as part of the broader problems with which they associate it. It is criticised for riding roughshod over the language concerns of many survivors, especially those from Black and minority ethnic communities. Critics argue it is elitist and mainly located in academia, with‘most of the prominent writers having PhDs or [being] candidates’ (Rose 2018, 138). It has also come in for criticism for failing to engage with Black people; its Eurocentrism and narrow origins in the Northern hemisphere and for not involving/including the South or even necessarily being relevant to it (Beresford, Russo and Boxall 2020 forthcoming). There is some truth in all of these complaints. They can be laid against many innovations and reforms emerging in a highly discriminatory and exclusionary world. It is equally important to recognise that from its beginnings Mad Studies has employed language to challenge and out psychiatry and its lexicon, rather than devalue those of us who have been subordinated by the two. It has determinedly confronted mentalist language rather than colluded with it. Madness like disability but unlike bio-medical understandings, allows for social understandings and encourages appreciation of how we can be made mad by society and our circumstances in it. Mad Studies has been based in communities as well as colleges, although academia has offered it opportunities not always available elsewhere. It is a field of study, but it has long been driven by and linked with activism. The urgent reality facing Mad Studies is that the western psych-system has been exported and imposed wholesale on the Southern hemisphere often without reference to people’s indigenous cultures, responses and arrangements and it is this it is seeking to combat. Most movements begin with vanguards. What is critical is the degree to which they seek to open themselves up to wider, more inclusive involvement and development. There are signs that Mad Studies is both alert to and attempting to address this issue seriously.

So what should we do, who feel that Mad Studies is a movement that, like the disabled people’s movement before it, has perhaps the most serious potential so far to challenge the damaging dominance of prevailing medicalised individual models and the global psychiatric system? Should we sit on our hands and wait for a new vocabulary; psych colonisation and disempowerment facing communities in the Southern Hemisphere to diminish so that they can join their less under-privileged counterparts in the North in full and equal alliance? Should we turn away from the space, opportunities and resources that the academy offers us that may be unavailable elsewhere? Should activists berate themselves for having gained qualifications against the odds? Of course not. How can the answer be yes, when the burden of doing so will be largely be felt by our brothers and sisters neglected in back wards or in places where mental health interventions may still be preferable to the hostile and frightening reactions that mad people can routinely expect to encounter?

This demands an agenda for action to strengthen the good that Mad Studies can do and minimise the risks it runs. This is likely to include:

• Recognising that we are at the early stages of a new movement and that our aim must be to build diversity and understanding within that movement, rather than being immobilised by its newness;

• No longer being silenced by the shortcomings of existing vocabularies and explain what we mean by ‘Mad’, just as disabled people have done about ‘disability’;

• Like earlier identity movements, co-opting and thus making harmless the language that has been used to oppress us;

• Building alliances with related causes like the disabled people’s and other movements and learning from their achievements and difficulties;

• Reaching out constantly to survivors facing additional barriers and discrimination to support their empowerment to ensure their increasingly equal role in the movement;

• To support the development of diverse non-medicalised individual and collective survivor narratives to counter dominant psych-based ones;

• To develop equal links between Southern and Northern hemispheres building on the grassroots challenges and movements that already exist;

• To focus our efforts on our survivor organisations rather than the old ‘for’ service user charities that take our energy, space and resources;

• To spread the word in ordinary ways and places, to explain that there is an alternative to the psych system and thinking. We do not have to be framed in terms of individual pathology and transcending this is better for everyone.

• To build and develop the social model of our experience that we know most survivors value (Russo 2018).

We must do this globally knowing that as survivors and allies, we are granted inferior credibility and discriminated against in the distribution of power, legitimacy and resources. But then this is the typical fate of new movements which we must resist and work to overcome together.

Disclosure statement

No potential conflict of interest was reported by the authors.