Wandering Minds: autism, psychogeography, public space and the ICD Presented at the Critical Disability Studies conference "Theorising Normalcy and the Mundane 2011", at Manchester Metropolitan University on 14th September 2011 Steve Graby sgraby@googlemail.com In March 2011 the Centers for Disease Control and Prevention (CDC) proposed the addition of a new diagnostic code to the International Classification of Diseases (ICD) for "wandering behavior" in people diagnosed with autism or other cognitive impairments, which will come into effect in October 2011, meaning that "wandering" will be diagnosable by doctors and can be officially recorded in people's medical records. This replaces previous sub-codes of the codes for Alzheimer's disease and dementia, and extends the medicalisation of "wandering" to affect a much wider group of people. While the new "wandering" code is supported by parent-led, and often cure-oriented, "autism advocacy" organisations, such as the National Autism Association (NAA) (who recommend various biomedical "treatment" options as well as "behaviour modification" techniques for autistic children), it has been strongly opposed by autistic-led advocacy organisations and other disabled people's lobby groups. The collaborative working group AWAARE (Autism Wandering Awareness Alerts Response and Education), set up by the NAA to promote the establishment of the diagnostic code, includes the notorious Autism Speaks as well as several other organisations whose publicly stated goal is the "cure" or elimination of autism. These organisations claim that the ICD code will prevent injuries and fatalities caused by autistic children wandering into dangerous situations, such as falls and drowning, which they present as a matter of "natural" rather than social risk, and focus exclusively on children in their promotional material, despite the fact that the ICD code does not mention children or any other age group, and thus could be applied equally to autistic adults. The introduction of the "wandering" code is opposed by groups including the Autistic Self Advocacy Network (ASAN), anti-discrimination lobby group Change.org, the Autism National Committee (AUTCOM) and many other disabled people's organisations, who argue that it pathologises, and thus denies the possibility of meaningful reasons for, autistic people's attempts to remove themselves from oppressive or abusive situations, deal with sensory overload, or simply walk freely in their local communities. ASAN's press release on the subject states: "No research exists to classify “wandering” as a medical rather than a behavioral phenomenon and the code has no definition that would differentiate wandering as a medical symptom from behavior of individuals who simply wish to move from one place to another for any number of reasons. By turning the behavior of wandering into a medical diagnosis, people with disabilities with the most significant challenges in communication could be made more vulnerable. For many adults and children who cannot speak, attempting to leave a situation is one of the few options available to communicate abuse, a sensorily overwhelming environment or boredom from repetition of the same tasks over and over. By creating a medical code for wandering, professionals could misinterpret behavior as a medical symptom and miss the legitimate concern the individual is trying to communicate." (ASAN 2011) In a joint letter with 40 other organisations, they also state: "The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that CDC‟s bases its other decision-making on." (ASAN et al 2011) Many individual autistic people have also expressed their concerns about and opposition to the code on blogs and forums online; for example, Lisa Daxter (who blogs under the name "chaoticidealism") describes her own childhood "wandering" to escape from domestic violence, and goes on to say: "The "wandering" code would do very little good, and much harm.... So how do we keep people safe without ruining their autonomy and ability to communicate danger or distress? Well, first of all, "wandering" of this sort needs to be seen as what it is: A behavioral choice; a purposeful decision. Just like any behavior, it can be communicative. People do things for a reason, and leaving your school or your nursing home or your parents' house is no different. The solution is not to physically contain the person; it's to find out what they needed that caused them to leave and then to provide that thing--whether it's safety, meaningful activity, privacy, or something else." (Daxter 2011) in response to which several anonymous commenters also describe their childhood "wandering" experiences. Many autistic people have also written, even before the proposed ICD code, about the ways in which "walking while autistic" has been pathologised as "wandering" - for example, Joel Smith (2007) describes the risks of being questioned by police, arrested and even institutionalised simply for displaying non-normative mannerisms while walking in public, and Amanda Baggs (2005) says, discussing the use of "wandering" as a derogatory and pathologising description of autistic people's actions: "When non-autistic people walk out of their homes, they are “taking a walk” or “walking somewhere” or something like that. When autistic people walk out of our homes, we are… wandering! I don‟t know what it is that gives people that impression. But I have been accused of wandering when: - Taking a walk. - Waiting outside rather than inside for staff to show up. - Trying to take a bus. - Running away from a fight that broke out at a day program. - Leaving the room to avoid reacting physically in anger. - Trying to escape institutions. - Going on long walks to explore the geography of an area. The assumption in all of these cases and many more is that we are just kind of moving around without any point to it. I suppose this should not be surprising, since most of what we do is described as purposeless and pointless. Not all those who „wander‟ are lost. Or even wandering." (Baggs 2005) This stigmatising use of the word "wandering" to describe behaviour in disabled people that it would not be used to describe in non-disabled people invites investigation of language and metaphor. Rebecca Solnit, in her history of walking Wanderlust, says "Walking and travelling have become central metaphors in thought and speech, so central we hardly notice them." (Solnit 2000, p.73) In this metaphorical framework terms such as "wandering", which refer to uncontrolled or undirected movement in physical space, are used in phrases such as "wandering minds" as metaphors for a disordered state such as that stereotypical of dementia. In a later chapter on gender and walking Solnit also states "A woman who has violated sexual convention can be said to be strolling, roaming, wandering, straying" (ibid, p.234), suggesting that "wandering" is used as a metaphor for deviance in "moral" as well as bio/psychological paradigms. Solnit's work draws attention to a school of thought arguably overlooked by the academic mainstream, that of psychogeography. Psychogeography is generally held to have its origins, as a term if not as a retrospectively identified body of theory, in the writings and practices of the Situationist International of 1950s Paris. The first use of the term is generally attributed to SI founder Guy Debord, who defined it in his "Introduction to a Critique of Urban Geography" (Debord 1955) as "the study of the precise laws and specific effects of the geographical environment, consciously organized or not, on the emotions and behavior of individuals", while Coverley (2010) locates it at "the point where psychology and geography collide" (p.89) and Ball (1987) claims that ""Psychogeography" was the word introduced to foreground the whole area of mental states and spatial ambiences produced by the material arrangements of the urban scene". This means that psychogeography has an obvious, if perhaps overlooked, relevance to Disability Studies, given that the social model of disability is concerned with the disabling effects of both conscious and unconscious organisation of the human-made physical and social environment on impaired individuals, and its focus on "emotions and behaviour" is particularly relevant to a perspective which takes into account "psycho-emotional disablism" as described by Reeve (2004). While disability was almost certainly not even on the radar of the Situationists, their intent to record the emotional and behavioural impact of urban space on individual consciousness in order to promote construction of a new urban environment that reflects and facilitates the desires of its inhabitants (Coverley, p.89) is surely relevant to any attempt to create a more accessible/inclusive and less disabling society. One of the key practices of Situationist psychogeography was the dérive (French for "drift"), a form of apparently destinationless urban walking that could be practised alone or in groups and described by Ball (1987) as "a kind of roving research along the margins of dominant culture". In Debord's 1958 "Theory of the Dérive", generally regarded as the definitive text on the dérive, he states: "Dérives involve playful-constructive behavior and awareness of psychogeographical effects, and are thus quite different from the classic notions of journey or stroll. In a dérive one or more persons during a certain period drop their relations, their work and leisure activities, and all their other usual motives for movement and action, and let themselves be drawn by the attractions of the terrain and the encounters they find there." (Debord 1958) In theorising psychogeography and the dérive, the Situationists arguably built on the earlier Parisian concept of the flâneur, most coherently theorised by Marxist literary critic Walter Benjamin in his writings on the poet Charles Baudelaire - a solitary and seemingly aimless stroller in the arcades of 19th-century Paris, observing but refusing to take part in the city's economic life. While the 19th- century flâneurs certainly did not possess a consciously stated political critique or form any kind of organised movement, several authors, including Solnit and Coverley, have placed them in the "prehistory" of psychogeography, and the Marxist psychologist Grahame Hayes (2003) draws on the alienated outsider/observer status of the flâneur to suggest a new, radical form of psychology research focusing on people marginalised by capitalist modernity. Hayes calls the flâneur "part and also not part of social relations" (p.52) and "the other of modernity, the marginalised of capitalist life", having "an alienation from sociality, and a fragmented sense of self", but argues that there is "a 'positive' dimension to this otherness, marginality and detachment", giving the flâneur "the freedom to see, to criticise even, from the 'outside'" (p.57-58). All these phrases call to mind common descriptions of autism, both in the othering and pathologising depictions in mainstream literature and in autistic people's own accounts of their experiences of struggling for understanding and acceptance in a predominantly neurotypical society, in which phrases such as "part but not part" and "alienated from society" are common (e.g. Meyerding 1998, 2003). Autistic writers have also frequently referred to the self-perceived advantages of an "outside" viewpoint on mainstream society, enabling them to more clearly observe and critique its hypocrisies and contradictions. A similar resonance with autistic experience can be found in Situationist and other conceptualisations of psychogeographical practice; for example, Coverley's statement that "The dérive may lack a clear destination, but it is not without purpose" (p.96) calls to mind the assumptions about autistic "wandering" that it is "purposeless" due to lack of a clear (or rather easily perceived by non-autistic people) destination - when, as has been shown, the purpose of "wandering" may not be so much a "to" as a "from", or it may instead be one of discovery and understanding of an environment, or simply enjoyment. Similarly, when Debord refers in his "Introduction to a Critique of Urban Geography" to "certain wanderings that express not subordination to randomness but complete insubordination to habitual influences" (an obvious reference to early dérives), this recalls the common dismissal of autistic people's behaviour, when it is difficult for non-autistic people to understand, as random or without meaningful motivation (when in fact it is often motivated by sensitivities that are real but not obvious to those who do not share them), and autistic people's "failure" to follow social scripts, frequently seen by non-autistic people as "irrational", but by ourselves as following rational motivations rather than arbitrary custom. This suggests not just that autistic people are particularly suited to conscious and critical forms of "destinationless" walking, but that the "wandering" pathologised by the new ICD code can itself be regarded as a form of political resistance, not merely in the sense that "the personal is political" (relating to the circumstances of particular individuals' "wandering"), but also in a wider and more general sense as a practice that challenges, perhaps even threatens, the norms of capitalist modernity. The question remains open as to whether this is due to something intrinsic to autism as an impairment (such as differences in sensory perception or information processing), to the particular social and political conditions of disablement experienced by autistic people, or to some combination of both and/or other factors altogether, and thus it may be problematic to refer to autistic people in general as "natural flâneurs" or "natural psychogeographers" - despite my own strong identification as such as soon as I encountered the concepts - but flâneury, psychogeography and the dérive certainly provide strong conceptual frameworks for a radical, pro-liberation analysis of autistic "wandering" as a form (whether consciously or unconsciously so) of resistance to capitalist systems of disablement and pathologisation. "Wandering" also needs to be placed in a historical context of struggles by oppressed and marginalised people to access both urban and rural public space. The rural walking movements of the early 20th century, which included the Naturfreunde (Friends of Nature) in Austria and Germany (Solnit, p.156) and the Ramblers' Federation in the UK, campaigned for freedom of movement in areas of natural beauty which were privately owned by the aristocracy, and attracted huge memberships from among the growing urban working classes, who desired to get out of their restrictive home and workplace environments at the weekends. In the UK, this culminated in the great Mass Trespass of 1932 on Kinder Scout, the highest point of the Peak District (which was privately owned and forbidden to walkers because it was used for grouse shooting), by the British Workers' Sports Federation, which resulted in a mass confrontation between hundreds of ramblers and gamekeepers and police, and the arrest and trial of 5 ramblers including activist organiser Benny Rothman (Rothman 1982). The public reaction to this political trial led to a long, slow process of establishing the "right to roam" in British law. Inspired by this legacy, the activist comedian Mark Thomas walked the entire length of the barrier between Israel and Palestine and titled the resulting book and tour "Extreme Rambling". In that book he describes meeting a Palestinian rambling group for whom rural walking is an act of defiance against Israeli state oppression, to "create the illusion of a more free and open space for ourselves" (Thomas 2011, p. 204). The risks undertaken by walkers in occupied Palestine may seem remote from the lives of most people in countries such as the UK and US, but autistic or otherwise developmentally disabled people can and do experience comparable dangers, in particular when disablism intersects with other axes of oppression and discrimination. There have been numerous reported cases in recent years, in countries including Canada, the UK and US, of autistic people who have been arrested, and in some cases charged with crimes and imprisoned, for nothing more than being outside and perceived by police as "suspicious". One of the most prominent recent cases is that of Neli Latson, a young African-American autistic man who was arrested while sitting outside a library in Virginia in May 2010, racially harassed by police and charged with several violent offences for which there was no evidence, and subsequently transferred from prison to a state psychiatric hospital, in which as of September 2011 he is still incarcerated (Baggs 2010; Reibel 2010). Latson's mother was quoted as saying "He'll walk five or 10 miles, it's nothing to him. Sometimes he walks five miles just to grab a bite to eat at Chili's. Walking is his release." (Reibel 2010). Similarly, 18-year-old Dane Spurrell was arrested and jailed while walking home at night in Newfoundland in April 2009 by police who "assumed [he] was drunk... because of the way [he] was walking and speaking" (CBC News 2009). There are inescapable parallels here with the treatment of women by state authorities in 19th century Europe (and in many parts of the world today). Solnit (p. 237-238) describes how 19th- century women "were often portrayed as too frail and pure for the mire of urban life and compromised for being out at all if they didn't have a specific purpose", and in particular the commonplace arrest and imprisonment of working-class women for "prostitution" (i.e. simply being outside at night and in the "wrong" areas) by the "Police des Moeurs" (usually translated as "Morals Police", or vice squad, but the word moeurs can also be translated as "manners" or "habits", suggesting a normativity going beyond the sexual) in Paris in the 1870s - the same time and place in which the exclusively male flâneur was such a celebrated archetypical figure. Much more recently, the "Reclaim the Night" movement - women marching en masse at night through areas associated with sexual assaults and harassment - was started in 1977-78 in Germany, the UK and the US in response to a serial killer who targeted female sex workers and a police response which was "to tell women not to go out at night, effectively putting them under curfew" (London Feminist Network, 2010), and more recently still the advice from a Toronto police officer to students at York University that, in order to avoid being raped, women "should avoid dressing like sluts" (Kwan, 2011) resulted in mass mixed-gender protest marches called "Slutwalks". In recent years disabled people, including myself, have been enthusiastic participants in such events, with the express intent of drawing parallels between the paternalistic oppression of women and of disabled people, and of building links between feminist and disabled people's liberation struggles. While gender-based and disability-based oppressions are clearly not identical, clear parallels exist and have been recognised by many both feminist and disability rights activists; in this case, restrictions on the freedom of movement of the oppressed group have been "justified" by paternalistic arguments about protection from (real or imagined, moral or physical) danger, despite the greater danger being from the "protectors" themselves, and behaviour which would be regarded as "normal" and unproblematic if undertaken by members of the privileged group (i.e. non-disabled men) is treated as unacceptable and in need of intervention by authority (whether state, religious or medical). Determining what action is "radical" can thus depend on the standpoints of the people doing it - while, when practised by (white, male, non-disabled and, mostly, class-privileged) Marxist intellectuals in 1950s Paris, the dérive seems pretentious, perhaps even ridiculous, when claimed as a revolutionary act, it appears as something quite different when - as for working-class women in an earlier Paris, for Palestinians under Israeli occupation, or for visibly disabled people in many parts of present-day Britain and North America - it carries risks of state-sanctioned violence and institutionalisation. While more spectacular forms of protest and direct action (both within the disabled people's movement and more generally) have, perhaps inevitably, received more media and academic attention, perhaps investigating and theorising acts as simple as walking in public as acts of political resistance is not only worthwhile - particularly in the light of feminist politics of the personal - in documenting disabled people's struggles for liberation, but also can counter medical discourses which insist on pathologising, and thus removing the possibility of agency behind such acts. Solnit (p.10-11) describes a general trend in contemporary Western society of the erosion of public space, influenced by trends of commercial privatisation of urban space and prioritisation of cars and drivers over walkers, meaning that "to be a pedestrian is to be under suspicion" (p.11) in many modern urban communities. A culture of fear of both walking in unfamiliar spaces and of "suspicious" people who might be encountered in them (suspicious perhaps because their motivations for walking in public space cannot be understood) can be placed in the context of the "global risk society" as theorised by Ulrich Beck, in which perception of life as full of dangers to be feared is influenced by neoliberal capitalist processes of globalisation/individualisation and the erosion of welfare states (Jarvis 2010). While these general trends affect everyone in modern society, if only at relatively low "background" levels, where they intersect with specific systems of oppression - such as disablist paternalism and pathologisation of disabled people's behaviour - the people affected by those systems suffer disproportionately great consequences. In summary: * The introduction of the "wandering" ICD code shows that behaviour is pathologised in autistic (and otherwise impaired/disabled) people that is not pathologised in non-disabled people. Although the same actions can be otherwise stigmatised or punished in other oppressed groups, and close parallels with other axes of oppression exist, the particular form of medicalising denial of agency experienced by disabled people is distinct and specific, at least in the present day, to disablement in an impairment context. To consciously and deliberately engage in such pathologised behaviour, despite the (real and serious) risks involved, can and should be seen as an act of political resistance. * Freedom of movement is still important and contested, even within the late-capitalist "West", and particularly so for those whose very personal struggles for it have been depoliticised and dismissed as "pathology" - who, ironically, are often those to whom, on an immediate personal level, it matters most due to specific impairment-related sensitivities. * Psychogeography has been overlooked by, but is potentially extremely useful to, a critical/activist Disability Studies, both as an "outsider discipline" which is particularly suited to theorising and "disabling" capitalist, patriarchal (etc.) norms from a consciously "abnormal" perspective, and as a conceptual framework for analysing issues around freedom, accessibility and public space which complements and enriches the social model of disability. 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