lne Gevers	curator  \  writer  \  activist

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Sebastian Brant, Ship of Fools, 1457 Breaking into the system Introduction Interventionist approaches to make 'Others´ look and behave like ´Us´, to ensure they pass on the conformity measuring scale, are ethically disapproved of, except when we are dealing with people who are differently brained. For centuries we have been tolerating even the most brutal and often irreversible procedures, such as electric shock therapy or psychosurgery, in order to 'cure' the 'mad Other'. Fully aware of the brain damaging effects of psychiatric drugs, shock therapy or even lobotomy and its modern variants, psychiatrists have been and still are performing these interventions as means to control all those who exhibit mental symptoms which transgress the norm. Politically and culturally, these mutilating brain operations and similar damaging neuroleptic medications are approved of as being 'in their best interest'. Despite the many challenges of postmodernism to the misrepresentations inherent in the binary foundations of psychiatric orthodoxies, psychiatry's authority to frame madness and distress in terms of 'individual pathology', 'disorder' and 'permanent defects' remains unquestioned. In order to avoid confrontation with our inability to relate to, let alone integrate with, people we have stigmatised as profoundly Other, it has proved to be highly effective to exclude neurologically different fellow-citizens from our direct living environment. In the 1970´s Michel Foucault researched and critically analysed the cultural formation of patterns of control and exclusion, of surveillance, institutionalising and disciplining of prisoners, the insane, the poor and the homeless throughout history. Madness & Civilisation (1) is the first profound study on the confinement of the mad, the insane, the disturbed, the idiots -terms that have now been replaced by more 'civilised' labels such as 'psychiatric patients', 'mentally handicapped', or even 'persons with possibilities'. The book describes the first attempts to get rid of 'fools' in the 14 th century, analyses the heavy use of asylums in the 17 th century, and unravels the institutionalisation and disciplining of those who transgressed the norm and were thus labelled as irrational from the Enlightenment on. Practices which still continue today. AFB 1 ship of fools Contemporary practices of misrepresenting and stereotyping the ´Other´ are complicit in creating social inequalities and systems of privileging and power as well. Thanks to postmodernist and poststructuralist laying bare of the many assumptions of modernism, which supposed the human subject to be white, male, rational and independent, critical awareness of such practices has grown substantially over the last decades. Many of the ideological underpinnings of systems of privileging and power based on the axes of gender, race, class, sexuality and age have been called into question. Due to the critique of the radical modernist assumption that the enlightened and autonomous white male should be the ground of both ontology and epistemology, we are now able to deconstruct all-encompassing and totalising narratives built on the same binary 'either/or' thought. Much of modernist discourse is now believed to be the foundation for practices of ´othering´. Many voices of difference have emerged along the former dividing line, contributing to the replacement of the rational knowing subject and universal mind by multiple minds, subjects and knowledges reflecting various social locations and histories. Feminism, queer studies and critical race studies brought the often artificially constructed modern/postmodern debate into lived reality. Continuing this line of thought, I will explore a field which might in time overshadow these current debates by a long way. The discourse on neurological normalcy versus neurological difference, seen within the parameters of today's technological, information-based economy and cyborgian society, will again give an edge to positions we thought we had left behind us. Several activist and self-advocacy groups of people who are differently brained, reaching for empowerment, have recently joined the arena of cultural resistance. Inspired by the theoretical insights of the disability pride movement and disability studies, Psychiatric Survivors Movement and Autism Culture are just two of the many self-advocacy groups that have come into existence. Disability studies, benefiting widely like cultural studies from postmodern and poststructuralist theory, seek to understand disability differently and as such support the empowerment of disabled people (2). Both individual and medical models of disability, perceiving and classifying disability in terms of a meta-narrative of deviance, lack and tragedy and assuming it to be logically separate from and inferior to 'normalcy', are characteristic of the knowledge systems generated by modernism. Based on this claim new models of disability are being constructed. Psychiatric Survivors Movement and Autism Culture are two of the more theoretically focused self-advocacy groups voicing their difference among the immense heterogeneity of people who find themselves in the position of being labelled either 'intellectually disabled' or as 'coping with mental health problems'. Aware of the fact that these different communities, extremely heterogeneous within their own boundaries as well, are not comparable, I will use the terms neurologically different (different from the norm) and neurologically typical (according to the norm) for strategic reasons. Both terms are invented by young activists with autism and have become widely accepted among experts and experienced professionals alike (3). Having placed some of these different cultures of resistance on the map, I will explore the concept of neurodiversity as it is being defined by new and rapidly emerging neuroscientific insights . Although we can almost speak of a neuroscientific revolution in terms of knowledge of the workings of the brain, a huge gap persists between pluralistic concepts of the human mind and the modernist mental/physical dichotomy which is still in use. This and other totalizing narratives also built upon dualistic either/or thought still tend to dominate the field when it comes to dealing with the human mind. Regarding neurological difference and/or disability, we are at the very beginning of even trying to deconstruct the modernist underpinnings of the organised and disciplined society as described by Michel Foucault. Practices of misrepresentation and stereotyping, pushing the thus defined 'Other' into the poorest of poor rank in every society, continue to manifest themselves even in futuristic narratives and in science fiction films. We can break into the microcosmic system we call 'brain', but we can try breaking into the larger, cultural system as well. After all this cultural system is, to quote the neuroscientist Antonio Damasio, 'wired into the brain' from the very beginning (4). In other words: disobeying and undermining the rules of our disciplined society, playfully transgressing the rules and prohibitions of the (language-based and discursive) system, is still an artistic option worth undertaking. In the long run a less restricted, heterogeneous, discursive and non-discursive, and certainly more inclusive cultural environment might even urge our brains to adapt. Artistic interventions such as Encountering the Culture of the Norm and Diagnosis: Different by Nature will be discussed as disruptive tactics in a system which seeks to insist on self- confirmation and self-preservation, whatever the ethical consequences for those who happen to fall on the other side of the dividing line. These and other interventions are meant to challenge the discursive nature of the symbolic cultural landscape at large. Political art in terms of articulating alternative identities and personal truths, and, to paraphrase the French philosopher Alain Badiou, counteracting dominant narratives of truth, may prove to be more effective than official politics. Performative actions such as reappropriation and recontextualisation, two of the age-old, traditional tactics for surviving colonisation, are still valid artistic tools contributing to pluralistic and inclusive societies for different bodies and minds. Disability Studies, Psychiatric Survivors and Autism Culture In his article Madness, the Absence of Work the late Foucault wonders how long it will take before 'madness' (exhibiting mental symptoms transgressing the norm IG) is fully under pharmacological control. Or, at least, what measures society will take to find the most convenient method of neutralization. Foucault mourns the way Western culture casts from its field "that in which it might just as well have recognized itself, where in fact it had recognized itself obliquely"(5). As madness is intrinsically linked to language, Foucault argues, it is madness that can give us insight in what exactly it is that makes us human. It is within language, the largest organisation of prohibitions, that madness became identified. In fact, madness came into being from limitations society set itself, not from freedom. Madness, to paraphrase Foucault, is forbidden language, "the language of those who, against the code, pronounce words without meaning, of those who utter sanctified words, or those who bring forth forbidden meanings". The 'mad Other' is a construction based upon a social, language-based consensus on what at a certain time is decided to be illegitimate language/behaviour. But there is more. Language and madness, the discursive and what excapes it, make one another possible. Madness cannot just be put aside as if it had only some sort of hidden signification, while it simultaneously presents itself as a huge reserve of meaning. Madness is like the gate opening up a semiotic realm where meaning might come to lodge, although it also very well might not. Madness might even be the very condition of language. With the exclusion of madness, according to Foucault, we might loose what is perhaps most responsible for our human condition: the capability of freely negotiating meaning through action and speech. Losing the possibility of creating ever new languages, idioms and forms, implies no longer being able to transgress the space of the one existing language that leaves no place for what is 'Other', or what Lyotard called the "Different". Language will tolerate no other than itself. It is only within different languages (different cultures IG) that are open to a diversity of meanings, that the "Different" - that which cannot be said within an existing language and therefore must be kept outside - may be kept alive, enabling human beings as heterogeneous as possible to relate to one another, understand, and shape ever new conditions for survival. AFB Other poststructuralist thinkers, too, have made attempts to resolve the binary reductivism which makes the lives of the disadvantaged often so difficult. In day to day life, however, it proves to be an almost impossible task to escape the system of signs within which each one of us is compared and measured along the scale from fully identical (conforming to the norm) to absolutely different (deviant). This classificatory order persists, even though Homi Bhaba, Judith Butler and many other 'voices of difference' have shown that Otherness is not measurable in this way. Comparing others by a measuring-rod of conformity unavoidably leads to misrepresentation and stereotyping. We are necessarily limited in approaching and relating to people who are neurologically different or a-typical unless we are willing to come to terms with our own limits, our own idiocy, our self-imprisonment in language and the culture of the norm (6). The need to acknowledge our own constraints becomes even more urgent in contemporary (bio)technological, information-based and digital society. With the invention of cyberspace, informed by gen-technology, globalization and virtual reality, we are seduced by the promise of the disappearance of old schemata. No longer are we tied to our own physical contexts. Geographical restraints or cultural frameworks have become interchangeable too. We zap or click from one context to the next, like eternal nomads. Perceptions, thought processes and new neurological networks develop in less than no time. Generations turn over more and more quickly and have increasing difficulties with mutual communication, like machines that have rapidly become obsolete and incompatible with each other. In some areas intelligence is no longer measured as a static potential which may or may not be given you, but   interpreted accordingly in terms of adaptiveness. The Slovenian philosopher Slavoj Zizek, in fact, predicts a complete implosion of the symbolic order -the Lacanian order of language and symbolic representation- as the outcome of upcoming information-technology (7). We tend more and more to take things at their interface value and this might, according to Zizek, become a much more dangerous situation then we can even imagine. Without an underlying structure, without a system to order information and make sense of the world around us, he claims we will slowly loose all the skills with which we used to interpret the world and which were self-evident before. All shared meaning will be doomed to disappear. Without a standard frame of reference, people and even the most familiar objects will no longer be recognizable. Even words will not come automatically anymore. The necessary illusion of subjectivity and identity will no longer be a given. No longer capable of differentiating between inside and outside, there will even be no way in which we can distinguish ourselves from others. Having lost the (symbolic) screen which not only translates the world for us, but protects us from devouring reality as well, in this apocalyptically sketched future we will be hopelessly lost. When Zizek's prophesy comes true, the perceptual, cognitive and social experiences of people worldwide will be quite akin to the knowledge, lived realities and survival tactics of people with mental disorders such as schizophrenia or autism. Fortunately, several of those who either are differently brained or have physical or intellectual disabilities have joined forces and started communities of their own. Following the model of deaf culture with its own mode of intra-communication, different and also heterogeneous cultures have been fighting for emancipation and empowerment. It is from within these new-born cultures, no longer tolerating their exclusion from the symbolic order, from normative society and humanity at large, that argumentative theoretical tools and innovatory narratives aimed at emancipation, a politics of identity, and inclusive societies, are being developed. From within disability culture (8) a new, humanities-oriented approach to disability is being developed, offering new insights and presenting alternative perspectives. Disability studies links in with, and borrows from, many fields and movements, including cultural studies, area studies, feminism, race-and-ethnic studies, and gay-and-lesbian studies. New-style disability researchers consider disability to be an ordinary human variation, like gender, race or ethnicity, and approach the topic accordingly. Informed by postmodern theory and cultural criticism, this new area of critical discourse pulls apart concepts about disability to see what cultural attitudes, antagonisms and insecurities went into shaping them. Most important is the differentiation between the individual and medical models if disability (disability as an organic defect) and the social model of disability (the social view of disability). The latter notion sees disability as socially created, constructed on top of the impairment, and places the explanation of its changing character in the social and economic structure and the culture of the society in which it is found. As both these theories of disability seek to explain it universally, ending up creating once more totalising, meta-historical narratives that exclude important dimensions of disabled people's lives and knowledge, the third option is to introduce disability as the ultimate postmodern concept (9). The disabled community can be represented as a culture, even if it is the most heterogeneous community one can imagine. One only has to consider the range of impairments under the disability umbrella, the different ways in which these impairments impact on individuals and groups over their lifetime, and the challenges which impairment presents to their notions of embodiment. The strong voice of the Psychiatric System Survivors Movement, supported by postmodern theory highlighting difference, diverse subjective realities and the rethinking of modernist assumptions about knowledge and understanding, has until now had little impact or influence on psychiatric and 'mental health' policy or analysis. This is all the more alarming since the Psychiatric System Survivors Movement already has a precursor in the anti-psychiatry dating from the early '60's (10). However, medicalized interpretations continue to predominate, despite the general acknowledgement of dubious modernist assumptions regarding rationality and independence as the foundation of the human subject. Despite postmodernism's aim to deconstruct such premises, the very qualities that in the past were thought to be essential to being human still determine the dividing line between who is considered to be a healthy and 'normal' subject and who is not. Once having transgressed the 'psychonorm', the whole notion of somebody's personhood can be questioned for the rest of their life. Dominant discourses of 'mental illness', madness and distress are still framed in terms of 'individual pathology', 'disorder' and 'permanent defect'. Even when the so-called permanency is challenged, it is nonetheless defined in medical terms of 'remission' or 'recovery'. The attempt of psychiatric system survivors to articulate their own understandings of their experiences come up against the "overarching dominance of medicalized definitions   and explanations of 'mental illness', or the analyses of non-survivor 'experts' and academics" (11). As fighters for disability culture, psychiatric system survivors point to the social construction of 'mental illness', while at the same time not denying the very real mental and emotional distress they and their relatives experience. However, they consider this experience to be part of a broader continuum of distress and well-being: "a continuum upon which all people would place themselves, in different positions and at different times in their lives"(12). The world simply does not consist of 'normals' and 'the mentally ill', it consists of people, all of whom may experience mental and emotional distress at some time(s) in their lives. People with autism perceive the world around them differently from what is accepted as normal. They interpret the world accordingly, leading to another way of thinking or a different mindset. As a result their use of language and/or social behavior deviates from the norm. Jim Sinclair, autistic himself, proclaims in Don't Mourn For Us: "It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are 'foreigners' in any society" (13). Sinclair speaks about the autistic as foreigner, as a stranger who does not automatically take part in the symbolic order. According to Sinclair autism is not something you have, it is what you are. It is pervasive and complete. Therefore it is much more revealing to think of autism as a different culture. Autism Culture has been constructed and voiced mainly through the Internet. For Jane Meyerding, autistic and internet-user, going on-line meant being able to enjoy company for the first time. One-to-one communication, fully controllable in the sense of when and for how long, being allowed - unlike in the real world - to take her time to formulate her answers, are only a few of the many advantages for her and other AC's (Autistics and their Cousins): "In real-world encounters with groups - even very small groups - of people, I am freighted with disadvantages. I am distracted by my struggle to identify who is who (not being able to recognize faces), worn out by the effort to understand what is being said (because if there is more than one conversation going on in the room, or more than one voice speaking at he time, all the words become meaningless noise to me), and stressed by a great desire to escape from a confusing flood of sensation coming at me much too fast. What's more, I must assume that most or all of the people around me are NT (neurologically typical IG), and I therefore feel compelled to hide or disguise ways in which I am different from those norms"(14). Since Internet became available, p eople with autism have organized themselves in self-help and self-advocacy groups all over the world and represent themselves as a separate communities. For the AC community the whole notion of neurological difference, introduced by the rise of neuroscience, rapidly became a new source of group and individual identity within society. One has only to search the many websites and online e-mail forums where High Functioning Autistics (HFA's) discuss their differences from the neurological norm and demand that society show an understanding and respect of neurological styles other than the neurotypical (NT) (15 ). Afb 2 website Neurological Typical . In fact, as black people have called for whiteness studies, so AC's are now militating for NT studies. People whose brains are differently organized than what is generally accepted as mainstream, now introduce their own '(non)symbolic orders' into culture at large. Neuroscientists and the status quo The neuroscientific revolution, marked by the Human Genome Project and advanced research into the human brain, has begun to challenge the often used binary distinction between "mental" and "physical" illness. Due to triumphs in the field of brain-imaging and other high-tech brain scans and treatment, one can no longer deny that the mental is physical. Most people, however, do. The mental/physical dichotomy is still in use, thus reflecting the very persistent belief that the workings of the brain are rooted not in biological processes but in some mystical force enshrined above and behind the eyes. Neuroscientists like Antonio Damasio and Steven Pinker have been opposing these persistent doctrines about the human mind in books like Descartes' Error and The Blank Slate: The Modern Denial of Human Nature(16 ). John Ratey, the author of Shadow Syndromes (1997) is less interested in abstract discourse regarding innate aspects of human nature or being fearful of how these discoveries will be used to justify inequality and weaken human responsibility and choice. Ratey is convinced that the upcoming neurological discourse is relevant not only for those who are differently brained, but for all human beings. He argues that the language we have traditionally used to describe what happens in our minds has now become inadequate. With the advent of brain-imaging techniques and neurobiological insights, both a new science and a new language are developing. "We have not yet", he writes, "a vocabulary to keep pace with the discoveries of neuropsychiatry: the classic language of emotion - love, hate, anger, joy, envy - does not capture the very powerful feelings evoked by conditions like for instance obsessive-compulsive disorder"(17). But in time, we will have. The key notion of his book: there is no such thing as neurological normality. It is more likely that there is only neurological diversity -a variety of perceptual windows on the world and roots of behaviour which neuroscience has only recently been able to identify. Ratey: "Probably none of us is "normal" -normal in the sense of possessing a brain in which every part and system works as well as every other part and system, and all functions lie well within an optimal range. Such a brain may in fact be a logical impossibility; it is possible that genius (or simply talent) in one realm develops as a result deficits (or weaknesses) in another (..)." Nor is there, besides, such a thing as a normal, one-to-one correlation between specific brain functions and specific behaviours. Ratey concludes that the usage of the term 'shadow syndromes' is justified to underline the neurological diversity of humankind today. People can have, and most of us have, "mild, walking-around forms of mental disorders - shadow syndromes- with which most will at some point in their life or within a certain environment - learn to cope (18). The sociologist Alexander Durig comes to the same conclusion from a different angle. In his book Autism and the crisis of Meaning (1996) (19), Durig describes the workings of the brains of a large variety of people by observing three modes of logical inference. He explains how everyday perception may be organised by a specific balance of induction (reasoning from specific premises to general conclusions), deduction (from specific premises to specific conclusions), and abduction (from general premises to specific conclusions). But this balance is different in every individual brain, although there are many whose mode of meaningful perception will fall within the normative range. Durig's introduction of the concept of 'slight autism' is as interesting as Ratey's shadow syndromes. Slight autism is applicable to all those individuals whose mode of interpreting the world combines a slightly less then normative inductive social inferencing with a superior deductive social inferencing, creating highly intelligent and often creative persons who nevertheless have difficulties expressing themselves in social situations. The slightly autistic can be characterized by extreme intelligence and/or creativity, combined with a weaker social side, which can easily give the impression of the person in question being eccentric or even odd. Unsurprisingly, many artists, scientists and philosophers actually belong to this interesting group of people (Albert Einstein, Thomas Edison, Ludwig Wittgenstein, Rob Wilson, Bill Gates). But more important in the context of my argument is the typology of different neurological 'mind states' Durig proposes. Based upon the large variety of possible combinations and balances between inductive and deductive perceptive engagement with the world, Durig comes up with many subtypes to replace the binary normal/abnormal still in use. Leaving the dichotomy of the medical model behind, Durig presents us with a simple matrix to set out the typology of mind states which are, of course, instead of normal versus deviant, healthy versus sick, differentiated up to infinity . Afb 3 uit Durig With the recent cracking of genetic codes creating the possibility of genetic manipulation, a future lies ahead of us where medical technology and genetic engineering will have advanced to such a point that bodies can be 'adjusted' before birth, or treated and cured after, so that disability becomes obsolete. This implies, however, that the dualistic medical model will dictate our world view more then ever before. Even in 'medically advanced' futuristic societies, where disability and madness as a physical condition may in fact disappear, disability will continue to exist. How can this happen? To explain this, we need to understand how the medical model permeates our value system and how the social model of disability is constructed on top of it. The social constructivist model explains disability or brain-difference as more than a physical impairment, more than a curable or treatable medical condition. Rather, it approaches disability as a socially created and culturally perpetuated phenomenon. Science Fiction films like Blade Runner, The Matrix and Gattaca present at first glance postmodern worlds populated largely with cyborgs or genetically engineered bodies, where disability appears to be eradicated. Closer examination however shows that disability as a social construction continues to dominate. Even the notion of (medical) 'cure' is constructed. Disability or brain difference, in the metaphorical if not physical sense, are still present in the utopias of the future. According to Frederic Jameson's analysis of the construct of Utopia and its 'false consciousness', there can be no doubt that the related 'class/value' system will demand its own system of 'haves and have-nots'(20). And here too, the 'have-nots' will occupy a stigmatised place in society. The stigmas will be socially created and in terms of disability will be assigned by one group to another based upon a specific valued body structure in much the same way as other 'commodities' are valued or devalued within society. Social stigmas like being unfit, subhuman, inferior, show the permanency of disability and/or neurological difference as social construction. In Gattaca, the concept of the gene as a commodity points at how the 'class' system is being created within this version of Utopia, and how the idea of disability as a social stigma is ensured. Here, the genetically manipulated beings are considered 'normal'. Naturally conceived humans are stigmatised and belong to a socio-economical underclass. Thus a world is constructed with 'valids' (genetically manipulated) and 'in-valids' or, as they are referred to in the movie, 'de-gene-erates' (naturally conceived). The leading figure in the film is the 'invalid' Vincent, who dreams of working for the élite corporation Gatacca and of being chosen for space exploration missions. However, given his stigma of natural conception, this is out of the question.   Fortunately for Vincent, he meets the fallen valid Jerome, an athlete who, because of a broken back caused by an accident, now uses a wheelchair. Jerome sells his DNA -his identity- on the black market and Vincent makes a deal. Carrying Jerome's urine, blood, skin and hair in wearable, hidden packets, Vincent passes the interview for the job - which consists of screening a drop of 'his' urine, resulting in the computer identifying Jerome (Vincent) as 'valid'. These are the basic ingredients of Gattaca. Besides the 'flawed' Vincent and 'crippled' Jerome, there are other notable 'disabled' characters in the film: the 'imperfect' Irene (Vincent's colleague and love), the detective who solves a murder, discovers Jerome's true identity, but being in-valid doesn't get promotion, and the twelve-fingered man. In the single scene he appears in, the twelve- fingered man performs a piece on the piano which 'can only be played with twelve fingers'. All elements in the scene are focussed on the difference, even a shot on the posters advertising his performance. This man is not a man with a disability, he is the disability, which is in fact the only reason he is being accepted. This might be called portraying disability in a positive light, but from an economical point of view it is solely based on his ability to perform his disability for the Valids, depending on their willingness to allow him to entertain them. More overt negative effects of stigma are shown by Vincent, Jerome and Irene. For instance Jerome, who has sold his identity, is now no longer seen as Jerome but as a wheelchair-using person, not even worthy to be mentioned by his (new) name (which is Eugene). Afb. Eugene, Gattaca. Even in a bar they frequently visit, Jerome, when he is spoken to, is only called 'sir'. This less-than-human status in society is also clear in comments made to Irene that her 'place is assured'. The places of all three in the society of Gattaca are assured as a result of what society perceives and not as a result of any particular ability. But, although all three are stigmatised, Vincent's and Irene's disabilities are not physically apparent like those of Jerome. And, according to the film's etiquette, it is Jerome who must die - supposedly because he cannot be 'cured'. The film clearly implies that his suicide, at the film's end, is linked to his disability. ›› part two