Disability & Society

ISSN: 0968-7599 (Print) 1360-0508 (Online) Journal homepage: https://www.tandfonline.com/loi/cdso20

‘Mad’, Mad studies and advancing inclusive

resistance

Peter Beresford

To cite this article: Peter Beresford (2019): ‘Mad’, Mad studies and advancing inclusive resistance,
Disability & Society, DOI: 10.1080/09687599.2019.1692168

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Published online: 18 Nov 2019.

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DISABILITY & SOCIETY
https://doi.org/10.1080/09687599.2019.1692168

CURRENT ISSUE

‘Mad’, Mad studies and advancing inclusive resistance

Peter Beresforda,b
a
Professor, Citizenship Participation, University of Essex, Colchester, UK; bCo-Chair, Shaping
Our Lives

ABSTRACT ARTICLE HISTORY

‘Mad’ is a contentious term with which many service users/ Received 28 June 2019
survivors feel uncomfortable. Yet it is the framework for a Accepted 1 November 2019
major new user-led challenge to bio-medical thinking
KEYWORDS
about distress – Mad Studies – which is coming in for criti-
Mad; Mad studies;
cism for this and other identified shortcomings. Why has it demedicalising; mental
adopted this controversial, conflict-ridden title? This article illness; terminology;
will explore current criticisms and raise the question of survivor-led; address-
what Mad Studies’ strategy should be to address them for ing diversity
the future?

Most discussion about mental distress continues to be framed in biomedical

terms as ‘mental illness’/‘disorder’. This is not only true of dominant profes-
sional and political debates, but also of much discussion from mental health
service users – even where that challenges the bio-medical direction of pre-
vailing policy and thinking. While there is some tendency to use euphe-
misms 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 emerg-
ing 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 move-
ments. It rejects a bio-medical approach to the domain widely known as
‘mental illness’ or ‘mental health’ and substitutes instead a framework
of ‘madness’.

CONTACT Peter Beresford [email protected]

ß 2019 Informa UK Limited, trading as Taylor & Francis Group
2 P. BERESFORD

This positioning of a radical user-led initiative within a framework of mad-

ness, 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 termin-
ology 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 ter-
minology, service users surveyed were still divided about terms like ‘mad’
and ‘madness’. Some thought they could be reclaimed, reflected their experi-
ence 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
 DISABILITY & SOCIETY 3

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 phil-
osophy 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 evi-
dent in its founding book and is a feature of the growing debates and litera-
ture now associated with it. But Mad Studies faces a conundrum. If its
advocates want to disassociate it from a biomedical model, then understand-
ably 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, experien-
ces, feelings and issues that nineteenth century science onwards has sub-
sumed 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 frighten-
ing 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 contin-
ued 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
4 P. BERESFORD

language concerns of many survivors, especially those from Black and minor-
ity ethnic communities. Critics argue it is elitist and mainly located in aca-
demia, 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 forthcom-
ing). 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 begin-
nings Mad Studies has employed language to challenge and out psychiatry
and its lexicon, rather than devalue those of us who have been subordi-
nated by the two. It has determinedly confronted mentalist language rather
than colluded with it. Madness like disability but unlike bio-medical under-
standings, 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 aca-
demia 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 arrange-
ments 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 them-
selves 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 medical-
ised individual models and the global psychiatric system? Should we sit on
our hands and wait for a new vocabulary; psych colonisation and disem-
powerment 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?
 DISABILITY & SOCIETY 5

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 move-
ment, 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 dis-
crimination 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.

References
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International Perspectives—An International Handbook. London: Routledge.
6 P. BERESFORD

Beresford, P., M. Nettle, and R. Perring. 2009. Towards a Social Model of Madness and
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