1. The End of Mental Illness?

In 2019 I wrote a short piece titled ‘Mad Pride and the end of mental illness’.Footnote ¹ The aim of the piece was not to argue that we were witnessing the end of mental health problems. The historical and cultural records, and everyday and clinical experience, show that psychological and emotional difficulties have always been part of being human and remain so. By ‘the end of mental illness’ I was asking whether it was time to end the dominance of medical and scientific language as a way of describing and understanding the wide range of experiences to which this language is currently applied. This is evident in categories like schizophrenia and bipolar disorder, in individual symptoms such as delusions and hallucinations, in the concepts of mental illness and mental disorder and, most broadly, in the idea that madness is a disorder of the mind. Dissatisfaction with this language has long been expressed by mental health activists, advocates, service-users, patients, and their allies. No better words express this dissatisfaction than those of Jacks McNamara, an artist and an activist who, many years earlier, was diagnosed with ‘bipolar disorder’:

McNamara's powerful words go to the heart of the matter in two ways: ‘these incredibly limited, awkward words seemed like the barest blueprints to my soul’. There is a sparseness and negativity to the language of medicine when it is applied to certain kinds of experiences. It fails to express the richness, the intensity, and sometimes even the value of these experiences. ‘Yet as much as I resisted their words, they were all I could find’. The problem, though it centrally includes mental health concepts and practices, goes far beyond both to signal a cultural problem. The culture has become impoverished and is dominated by reductive concepts. The connection between madness and illness has been drawn too tight in the cultural contexts in which modern psychiatry developed. Mad Pride activists have been working to change this.

The aims of this essay are threefold: (1) to advance the view that Mad Pride activism, in aiming to revision and revalue madness, is engaged in the creation of culture; (2) to explore one area of cultural creation pertaining to understandings of the self and their relation to the psychiatric notion of passivity phenomena (such as thought insertion); (3) in those terms, to identify some challenges that face the cultural dimension of Mad Pride's project.

Before proceeding there are two points that I would like to state at the outset. First, there is no consensus in mental health activism on the question of diagnosis and medical language more broadly. Some people find value and meaning in their diagnosis and would not want to get rid of it. Additionally, diagnosis plays a crucial role in research and development of treatments, and some sort of classification of mental health phenomena is bound to be always with us. That is why I have referred to the dominance of medical language as the problem (and the corresponding lack of viable cultural alternatives), and not to the medical approach in itself. Indeed, something like a medical, or somatic, approach to mental and behavioural difference goes back to the Ancient Greeks, and physical theories of various degrees of sophistication exist all around the world today. But medical language has come to dominate, with alternatives being pushed aside, and that is the issue that we need to address. Second, I want to stress that the following exposition and arguments are not about glamourizing or romanticising madness, as if it is all about creativity, prophetic visions, and wisdom. Madness can be all of this, but often it is not. Often it is about fear, terror, paranoia, confusion, and challenges to everyday functioning and participation. Nevertheless, the question of how to understand all of this is precisely what is at stake. And the message now coming loud and clear is that for many people medical language is inadequate, and that the culture needs to change.

2. Some Definitions

3. Unlikely Affinities: Mad Pride and the Dakhla Oasis

In 2009, when I began to learn about Mad Pride, I was engaged in ethnographic fieldwork in the Western Desert of Egypt (Rashed, Reference Rashed2012). I was based in the small town of Mūt in the Dakhla Oasis and ventured into the many surrounding villages. My central aim was to learn about spirit possession, sorcery, and Qur'anic healing as ways of understanding and managing psychological, social, and behavioural problems in the community. Part of what prompted my research in Egypt was my desire to investigate alternatives to mental health discourse and practice. Having just completed my psychiatric core training in London, I wanted to see what an alternative system would look like, and the Dakhla oasis offered the perfect opportunity: there were no psychiatric services, and even though there did exist some rudimentary physical explanations of mental health problems, the main explanations centred around spirits, faith, faithlessness, unseen forces, as well as troubled social relationships and their impact.

The oases of the Western desert are unusual places, locked in semi-isolation for centuries and only opening up slowly to the rest of the country over the course of the twentieth century. Yet, despite the vast social, cultural, and geographical distance separating the people of Dakhla from activists in the UK, the United States, and Canada (the typical centres of mental health activism), encountering Mad Pride while I was doing ethnographic fieldwork led me to a simple but important observation: Mad Pride activists were creating culture, and so what we were witnessing was the creation of culture in action. And what was being created had affinities with what was already the case in Dakhla. Not in the exact content, for that is bound to differ, but in activists’ aspirations to widen the language of mental health away from an exclusive focus on the dysfunctional body or mind, and towards a broader concern with persons’ relationships with the world around them and all that it contains or is imagined to contain. In this sense, Mad Pride is seeking to transform society's cultural understanding of what it is to be normal and the meaning of madness.

4. Battles for Re-Definition

The creation of culture in the deep sense intended here cannot be accomplished by using new words to refer to the same concepts. In order to have a genuinely different perspective on and valuation of a phenomenon, it is not always sufficient to call it something else: as long as the underlying framework is the same, a new term will carry through similar beliefs and values. This is evident in the evolution of mental health terms: mental disease, mental illness, mental dysfunction, mental disorder, mental health conditions, mental health problems, mental health issues, and now just mental health. I am not suggesting a chronological improvement here, but the final term, mental health, would seem to be the least stigmatising. Yet, not so long ago, I heard one person say to another in an attempt to disqualify a third: ‘don't listen to him, he has mental health’. Much more is needed than changing words.

Responding to Mad Pride requires major transformations in the beliefs and values that inform popular and professional attitudes toward madness. Our ideas about ‘mental health’ are not floating on the surface of our conceptions of rationality, responsibility, self, personhood, and agency, but are constituted by them; for example, in order to explain why a group of people disvalue the experience of hearing voices (which they might describe as auditory hallucinations), our explanation has to invoke deeply held norms that touch on what it is to be a self and in control of one's mental life. As Jennifer Radden (Reference Radden2012, p. 3) argues:

Revisioning and revaluing madness requires that we revision and revalue some of the basic underlying concepts. Now many social movements are trying to bring about a radical change in some of the concepts that people take as fundamental to who they are, such as gender categories, sexual orientation, race, ethnicity, and others. And as we see around us today, there is much tension in these ‘battles for re-definition’, something evident in current discussions about the meaning, the boundaries, and the stability of gender categories.

That there is tension is to be expected. Many people are invested in these concepts – they understand themselves through them and attempts to radically redefine them are bound to encounter some resistance. It is, therefore, also understandable that there will be resistance to Mad Pride, for if concepts like gender and sexual orientation are basic, then concepts like self, agency, and rationality are arguably even more fundamental to people's understanding of themselves and of the world around them. A philosophical account and support of Mad Pride would push against this resistance by examining whether some of the basic underlying concepts are defined in a way that perhaps unjustifiably excludes and pathologizes a range of experiences. By doing so, the promises and the challenges of Mad Pride's endeavours to create culture can be clarified.

5. The Self and its Mental States: Subjective Perspective

One of the basic concepts key to the process of the redefinition of madness is the concept of self. The concept of self has many definitions, and there is little agreement among philosophers and anthropologists as to what the self is. Melford Spiro (Reference Spiro1993, p. 114) offered seven definitions, two of which are likely to be more widely acceptable: the self as an awareness of our separateness from others; the self as the centre of our sensations, emotions, perceptions, thoughts, and intentions (our mental states). Berrios and Markova (Reference Berrios and Markova2003, p. 30) develop the latter point further by viewing the self as a core that can ‘integrate, harmonize and tag all cognitive, emotional and volitional acts performed by each individual’, and create ‘a feeling of continuity with the past and future’.

While we might not agree with the exact phrasing of Berrios and Markova's view of the self, their definition is useful in that it implies two ways in which we can talk about the coherence of the self: the unity of self at a time where we integrate, and identify with, our present mental states; and the continuity of self over time where we identify with our past and future mental states (see Radden, Reference Radden1996, pp. 11–12). I shall focus on the former dimension of the self's coherence. At any given point in time, we expect to identify with, or to own, our mental states no matter how unsavoury we judge them to be. Imagine that you are going about your day, and an aggressive or indecent thought comes to your mind. To you at the time, it appears to be out of character and creates disharmony in your mental life. You try to think of something else, to brush it off, to push it away, and you might succeed. But throughout all of this, you continue to regard this thought as your own. You might even try to harmonise it with your other beliefs, and to use this occasion to develop a more rounded understanding of yourself. An analogy can clarify this predicament further and aid us in a distinction still to come.

Imagine a symphony orchestra all kitted up and ready to go. As the musicians begin the performance, one of the cellists plays the wrong score, or the right score but at a different tempo or key. Inevitably, the orchestra fails to produce harmonious music. The errant cellist is a disharmonious element, yet from the perspective of the orchestra, it is an element that should be there: it is a legitimate part of the orchestra and is accepted as such. Continuing the analogy, there is something else that could happen, and which would indicate a different sort of problem. Imagine that a person walks in with a whistle, finds a seat, and starts whistling randomly during the performance. The orchestra would still fail to produce harmonious music, but something more is going on: the whistle is not a legitimate part of the orchestra and should not be there at all. None of the musicians accept it as part of their ensemble. There is, then, a difference between the presence of a disharmonious element that nevertheless should be there (the cellist), and the presence of an element that should not be there (the whistle). The errant cellist undermines the harmony of the orchestra while the intruding whistle breaks down the unity of the orchestra.

If the orchestra is the self, then the musicians are the various mental states. The errant cellist is the out-of-character aggressive thought that popped into your mind in the example I gave earlier, i.e., the thought that created disharmony yet was accepted by you as part of your mental life. What about the whistle, what does it stand for? It seems to stand for a mental state that should not be there at all. What does that mean?

There are certain experiences that fit the predicament of the whistle. Psychiatrists and clinical psychologists refer to these by the general term ‘passivity phenomena’ (see Sims, Reference Sims2003, pp. 164–71). What happens in such cases is that a person experiences a thought, an impulse to do something, or a feeling, but does not experience the familiarity that people ordinarily have in relation to their thoughts, impulses, or feelings. What is going on is more than having an unsavoury thought; there is a lack of identification with the thought and it doesn't feel like the person's own. In clinical language, this particular experience is described as ‘thought insertion’, and the following description illustrates the certainty with which such thoughts are experienced as alien:

The orchestra analogy helped us distinguish two ways in which the unity of the self can be put into question: disharmony and lack of identification. The former is evident in the experience of random or inapposite thoughts that are still one's own, and the latter is evident in the experience of alien and inserted thoughts.

Throughout the preceding analysis we were observing from the point of view of the self as it attends to its mental states. We can now adopt an observer perspective and look at the self from the outside, as it were, and assess the way in which it attends to its mental states.

6. The Self and its Mental States: Observer Perspective

The experience of a disharmonious mental state is relatively common and readily comprehensible. On the other hand, the experience of an absolute lack of identification with a mental state, such as with thought insertion, is relatively uncommon and, for outside observers, resists everyday empathic understanding. If you are having the latter experience, you would typically seek some explanation as to who had placed the thought in your mind; what other person, being, or force can be credited as its author? Through such an explanation, thought insertion becomes, for you, a potential source of knowledge and an enrichment of the self. From an observer perspective, there is something concerning about the way in which the self is unable to experience itself as the author of its own mental states. From that perspective, passivity phenomena, such as thought insertion, constitute a breakdown in the unity of self and a threat to self-knowledge. For this reason, so the argument goes, they are rightly considered within the domain of psychopathology or, at least, are undesirable experiences. If that is the case, then in the limited domain of so-called passivity phenomena, there is an obstacle to the revisioning and revaluing of madness that Mad Pride is calling for.

If we pare down this line of argument to its essentials, we will find that the disagreement between the subjective and observer perspectives concerns the right explanation for the self's lack of identification with its mental states. From the subject's perspective, this lack is taken at face value, and the absence of familiarity with a particular thought is explained by citing an external agent as the author of that thought. From an observer perspective, this explanation won't do. In place of it, various theories are invoked, ranging from neuropsychological and cognitive models to psychodynamic and phenomenological interpretations. All such theories begin by rejecting the subject's explanation, and then reason as follows: given that external authorship of mental states is not possible, how else do we explain the self's lack of identification with its mental states? The fundamental point of disagreement between the subjective and observer perspectives, therefore, concerns the possibility of external authorship of mental states.

A glance at the anthropological literature, on spirit possession for instance, would reveal that there are conventions of the self grounded in particular cultural worldviews that affirm the possibility of external authorship of mental states. Let us not concern ourselves for now with the validity of these conventions, but only register their existence. In contrast to these views, the convention of the self implicit in the observer perspective outlined in this section does not permit external authorship of mental states. As a convention, it insists on maintaining clear boundaries between the self and other agents, who can only influence my mental life indirectly through conversation and shared activities. Horacio Fabrega (Reference Fabrega1989, p. 53) describes such a convention as follows:

According to this convention, the boundaries of the self are not permeable in the way presupposed in thought insertion and passivity phenomena more generally. Furthermore, according to the cultural worldview that animates this convention, there are no forces or beings in the world that have the assumed power of placing thoughts in people's minds or controlling their actions. If we can describe this cultural worldview in one word, we can say that it is disenchanted. I borrow this term from Charles Taylor's A Secular Age (Reference Taylor2007, pp. 29–31), where he describes a disenchanted world as one where:

A disenchanted worldview is categorically opposed to the subjective perspective on passivity phenomena, and lack of identification with one's mental states is seen as a psychological aberration. What about conventions of the self that allow for external authorship of mental states – how would they view passivity phenomena?

7. The Dakhla Oasis II

During fieldwork in the Dakhla Oasis of Egypt, I met a young man who recounted to me his involvement with a jinni (a ‘spirit’) – I refer to him as Mahdi (see Rashed, Reference Rashed2012):

As we can see from this fairly long quote, Mahdi's experiences with the jinni have elements of a complicated and dramatic human relationship: love, jealousy, care, insecurity, loss, and control. From the perspective of descriptive psychopathology (and its underlying disenchanted cultural worldview), his experiences recall several symptoms: auditory hallucinations (second-person and command hallucinations), thought insertion, volitional passivity, and passivity of impulse. From the perspective of his own community in the Dakhla Oasis, a rich picture emerges, certainly richer than what is possible through the vocabulary of disenchantment.

For many people in the Dakhla Oasis, mood changes, unwanted thoughts, and unsanctioned compulsions and desires, can be brought about through the effects of non-human agents intent on drawing us into their world in a variety of ways. These agents are referred to as jinn, and there is a cultural script that describes their nature, powers, and avenues of interaction with humans. One possibility for interaction was noted by Mahdi when he described himself as mekhawy. This word is derived from the Arabic root for brother, and refers to a state of closeness, and possibly intimate involvement, between a human being and a spirit. The spirit can affect the person's moods, perceptions, and directly influence thought and action. In Mahdi's case it was regarded by him as a source of knowledge, providing him with useful information about people, who to trust, who to trade with, and who to avoid. At times, it did so by placing thoughts directly into his mind. At no time did Mahdi or others in his social circle regard his experiences as a breakdown of self; it was an enrichment of self through the relationship with the spirit and the information it can give. Of course, this relationship was sometimes a source of distress for Mahdi, but that was not because he understood himself to have a psychological difficulty – rather, it was in the nature of relationships to sometimes be difficult.

We can see that, in contrast to the disenchanted cultural worldview, conventions of the self that allow for external authorship of mental states have a radically different view of passivity phenomena – no longer a breakdown in the unity of the self but a possible enrichment of the self.Footnote ⁵ Could such a convention play a role in the revisioning and revaluing of madness that Mad Pride are calling for?

8. Mad Pride and the Cultural Repertoire

And so, we are back to Mad Pride and to the key theme of this essay: the creation of culture. We can now more precisely understand the creation of culture (in the case of the concept of self) as the attempt to generate and popularise conventions of the self, its environment, and its possibilities through which things like passivity phenomena could be seen as potentially enriching experiences, and not as psychopathology. But achieving this is far from easy. To the modern sensibilities of many people, stories about outlandish beings, ethereal forces, and porous selves are no longer part of the cultural imagination. They stretch the boundaries of intelligibility or, otherwise, are considered endearing though obsolete notions. There are many ways of telling this familiar story, with at least two from within philosophy.

Philosophers can reasonably ask whether spirits (and similar beings) can exist and if they can really account for the phenomena they supposedly cause. Spirits raise ontological and epistemological questions, i.e., questions concerning the nature of the world in which these beings could exist and whether it is possible to gain knowledge of them. In the manner they are culturally represented, spirits have a paradoxical nature. On one hand, they are ethereal beings that exist outside the causal realm available to our senses; on the other hand, they are able to exert effects in the physical world (through possession and influence), an ability that casts doubt on their ethereal nature. On the former view, the very possibility of spirits becomes questionable on epistemological grounds, for how else would we know about them if not through our senses? On the latter view, spirits become superfluous interpretations, for what we are clearly talking about are causal mechanisms of this world. This paradoxical representation of spirits is only possible given a substance dualist interactionist ontology, or Cartesian dualism. Spirit possession requires that there are two distinct substances in the universe (material/physical and immaterial/spiritual), and that two-way causal interactions between these substances are possible. Interactionist dualism is not a popular view in philosophy and has received several, potentially fatal, objections. For example, the physicalist doctrine that any state that has physical effects must itself be physical (or supervenes on the physical) excludes the possibility of immaterial substances exerting effects in the world as presupposed by interactionist dualism.

In addition to these difficulties, there are other issues to do with broader developments of a philosophical-anthropological nature. Taylor (Reference Taylor1982, Reference Taylor2007) writes of a distinctive epistemological stance that accompanied the rise of modern science. This stance involved a separation between understanding and attunement – between, on the one hand, registering the world ascetically and, on the other, feeling at home in it. Until this stance took hold, there was an assumed mutuality between understanding and attunement: the order of things of which individuals would have to be a part constrained the process of evaluating evidence and challenging theories (a seventeenth century refutation of Galileo's discoveries held that, contra the observations of the Astronomer, there had to be seven planets exactly since the different domains of being were all aligned to this number). With the scientific revolution, the idea that the world has a meaningful order and is an object of attunement ‘was seen as a projection, a comforting illusion which stood in the way of scientific knowledge’ (Taylor, Reference Taylor1982, pp. 96–7). Breaking the connection between understanding and attunement involved the rejection of the idea that the world has a meaningful order imposed on us from above. This in turn required relocation of meaning from the beings and forces that imposed it on us to the interiority of the mind and to human interaction (Taylor, Reference Taylor2007, pp. 29–31). This relocation is the process referred to earlier as disenchantment.

It is clear that there are obstacles to full engagement with at least one kind of narrative that could play a role in the revisioning and revaluing of madness. Transformations in modes of engagement with the world and lingering charges of incoherence prevent certain ideas from meaningful incorporation in the cultural repertoire. If Stephen Lukes (Reference Lukes2008, p. 14) is correct in asserting that ‘there is no route back from modernity’, then revisioning and revaluing madness cannot be achieved by rehabilitating spirits and sprit influence. At the same time, we must acknowledge that we need to move beyond the restrictions of the disenchanted cultural worldview, restrictions that have impoverished our cultural repertoire: the rarefied language of medicine and psychiatry is often inadequate for expressing our psychological, emotional, and experiential complexity. The challenge facing Mad Pride activists is to generate and popularise narratives of madness that can address these inadequacies while having the potential for large-scale cultural acceptance. It is a challenge that activists have already taken on: from the narrative of ‘healing voices’ that restores meaning to ‘auditory hallucinations’,Footnote ⁶ to accounts of spiritual transformation – in Carl Jung's (Reference Jung1970) sense of metanoia – that move beyond spirit influence and embrace ecological perspectives (e.g., Fletcher, Reference Fletcher2018), to the Icarus Project's powerful notion of ‘dangerous gifts’,Footnote ⁷ we are witnessing the creation of culture in action.