“ ‘Are You Sure, Sweetheart, That You Want to Be Well?’ ”: An Exploration Of The Neurodiversity Movement
During a discussion of the embodiment of cultural knowledge and the ways in which (forced) assimilation can be experienced as a violation enacted in the deepest level of self, Jacqui Alexander quotes the opening scene of Toni Cade Bambara’s The Salt Eaters, in which one character asks another, ‘Are you sure, sweetheart, that you want to be well?’ (as cited in Alexander, 2005, p.277). This question gets at the heart of many of the issues with which the Neurodiversity movement and the people who identify themselves as part of the communities from which this movement stems are concerned. What does it mean to be ‘well’? Who is it that gets to decide if one is well or not? By what criterion is this decision made? Is it the subjective experience of the patient which determines wellness? The opinion of the medical community? The extent to which a person is able to blend effectively into the social and economic world, regardless of the possible cost to the person doing the blending? In a world in which emotional, perceptual, intellectual and interpersonal experience can come in many forms and configurations, who is it that must accommodate whom and to what extent? To what extent do the so-called ‘neurotypical’ have the right to enforce their social and behavioral rules and expectations on those whose ways of experiencing themselves and the world differs from the accepted norm?
While the actual term ‘neurodiversity’ was not seen in print until 1997, The neurodiversity movement is often thought to have begun with a speech made by Jim Sinclair at the 1993 International Conference on Autism at Toronto, called ‘Don’t Mourn for Us.’ In this speech, Sinclair asked the parents of autistic children to try to understand that ‘Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion and encounter. It is not possible to separate the person from the autism’ (Sinclair, 1993). He further asks them to understand that what it is they feel they have lost, when they speak of ‘losing a child’ to autism, is not the actual child him/herself but the idea they had of what that child would be like, what kind of relationship and experiences they would have with the child. The parents of an autistic child, he says, have not lost a child, but an illusion. They must mourn the passing of the illusion and then accept the child on his/her own terms (Sinclair, 1993).
Jim Sinclair is himself autistic and his speech stood as a representative of the very beginnings of a self-advocacy movement for social acceptance and self determination that was developing within the autistic community in the mid-nineties. While there had always been autistic advocacy groups, it was not until recently that these groups were led by members of the autistic community themselves. Increasing use and availability of internet technology has played a key role in allowing autistic people, who would otherwise be unable to meet, speak, and form a cohesive movement to gather and make their views, wishes and ways of perceiving themselves and their differences known.
Online Communities: Diversity Friendly Alternative forms of Activist Networking.
Internet communication — email, instant messaging, chat rooms — slows down communication and dispels with body language and the need to interpret facial expressions, all things which make it a particularly friendly form of communication for people on the autistic spectrum. Many neurodiverse people, regardless of the form their neurodiversity takes, are more comfortable socializing on the web, because it allows the individual to have a much more thorough degree of control over the experience of interacting with other people. Susanne Antonetta, who is bipolar and the author of A Mind Apart: Travels in a Neurodiverse World, writes that: ‘For many of us, the difficulty of finding other people who share our mind ways and communication styles and the discomfort of having to provide immediate answers or, perhaps, account for bodies and eye contact in conversation makes the Web a preferred way to speak’ (2005, p.7).
Socializing on the Web allows one to communicate with an international community of people while remaining at home in an environment one can control, which eliminates or reduces the possibility of getting over-stimulated by an unfamiliar or less controllable public environment. It allows one to phrase and rephrase one’s thoughts before ‘sending’ them and to take all the time one needs before responding to another person. It eliminates the need to control one’s outward behavior — one can rock, pace, fidget, laugh, cry, talk out loud to oneself, and/or act in any number of other ways which might be seen as inappropriate in the public world without fear of exposure. On the internet, no one knows what you are doing and/or feeling unless you tell them. A recent article in the New Scientist titled ‘Web Removes Social Barriers for those with Autism’ quotes Camille Clark, a woman with Asperger’s syndrome who publishes a blog called Autism Diva, who says: “‘Anyone may have interacted with an autistic person by email or internet bulletin board and not known that the second person is autistic. That makes a big difference to the autistic person”’ (as cited in Biever, 2007).
While autistic and other neurodiverse people have been making widespread use of internet listservs, chatrooms, bulletin boards and other forums of online expression since the nineties, the internet program Second Life has recently emerged as one of the primary hubs of socialization for these groups (Biever, 2007). The cultivation of Second Life as a gathering place for autistics and other neurodiverse groups began in 2005 when a Harvard researcher in neurology created a “private island within Second Life called Brigadoon, designed for people with autism” (Biever, 2007, p. 26). His hope was that people would use the island as a consequence free place in which to develop and practice social skills. The cartoonish avatars used by participants in Second Life make exaggerated facial expressions which are easy to read and break down for analysis, thus making it a good forum for learning this and other types of ‘body’ language. Soon, however, people began leaving the protective space of Brigadoon and heading out into the public world of Second Life. Two women who objected to the therapeutic intentions of Brigadoon, Amanda Baggs and Laura Tisoncik, formed what they call the ‘autistic liberation front’ within Second Life, which has since become a major forum for neurodiversity consciousness raising and activism where ‘autistic people can “organize, educate and advocate for ourselves”’ (Biever, 2007, p. 26 ).
Also notable is the website titled the ‘Institute for the Study of the Neurotypical’, a satirical website founded by neurodiversity activist Muskie in 1998 which pokes fun at the behavioral and mental proclivities of so-called normal people. This website examines the symptoms, prognosis, social, individual and cultural implications of ‘neurotypical syndrome’, a ‘neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity’ and subdivided into ‘Staff Personality Disorder’, ‘Normal Personality Disorder’, ‘Pseudosimultaneous Awareness Disorder’ and ‘Psychiatry Disorder’ (Muskie, 2002). At this website, one can take a test to see if one might be a victim of ‘neurotypical syndrome’ and find advice on coping with, as well as sympathy for having to cope with, those afflicted with normality. Numerous satirical ‘academic’ and ‘diagnostic’ papers regarding normality disorders are published on the site and ‘persons on the autistic spectrum and NT supporters are invited to submit papers to the Institute, and to share your observations in “Current Research” (the guestbook)’ (Muskie, 2002).
Such forums are important for building a base network of support for consciousness raising and activism within neurodiverse communities, and they work to counter negative self images arising out of immersion in the standards, preconceptions and constraints of neurotypical culture and social institutions. For many, discovering these alternative communities provides the first positive, self affirming portrayal of their own minds that they have ever encountered and become the first place in which they are encouraged to value themselves and to decide what they want and how they want to live and then take steps towards making those desires real. Antonetta, discussing her discovery of the online world of neurodiversity activism, writes of her:
astonishment of the world I’ve grown into . . . of whole cybercommunities coming together for the purpose of defining who we are and what we want from medical treatment. It is a brave new world . . . a world that offers enough wonder, in itself and in the discussions it creates- of gifts and challenges, of all that comes from neurodiversity- to make me want to sit down with it, and consider it from as many places as possible . . . to think hard about this defining aspect of my life, and the lives of others around me (2005, p.12).
Beyond Autism: Expanding the Boundaries of the Neurodiverse Community
Currently, the concept of neurodiversity has been expanded beyond the autistic community to include people who have been diagnosed with attention deficit hyperactivity disorder, bipolar disorder, dyslexia, Tourette’s syndrome and numerous other mental, intellectual and emotional differences. Activists from within the neurodiversity movement take the stance that all these differences should be seen as part of the spectrum of diverse human experiences and valued as such. They believe that neurodiverse individuals should not be forced to conform to the behavioral standards of ‘neurotypicals’ and that they should not be coerced through blatant or subtle means into taking unwanted prescription medications to treat their conditions. They believe that much of the pain and difficulty autistics and other neurodiverse people endure is due to the pressure to conform to intolerant and restrictive social norms, institutions and habits — not due to the existence of neurological differences in and of themselves (Baggs, n.d.).
Kathleen Seidel, a neurodiversity activist who has a son with Asperger’s Syndrome and exhibits many of the characteristics of Asperger’s Syndrome herself, addresses the counterproductive nature of trying to force people on the autistic spectrum to conform to behavioral norms in the following excerpt from a letter to the Congressional Autism Caucus. She writes:
Many autistic adults have described how they find eye contact uncomfortable, distressing and counterproductive to comprehension or communication; many have described how rocking or other harmless repetitive acts help to calm their nerves and focus on matters at hand. I believe that we should pay attention to such information so that we do not spend a lot of time and effort trying to persuade both autistic children and adults to imitate behavior that is alien and nonfunctional to them, or to eradicate behavior that is natural and useful to them, for the sole purpose of making it easier for inflexible neurologically typical people to feel comfortable in their presence (Seidel as quoted in Antonetta, 2005, p.10).
The desire to be freed from forced behavioral conformity, when such conformity is not seen by an individual to be in their best interest, is probably the most central concern of the neurodiversity movement and community. Much of the therapeutic focus in programs working with children with Autism and Autistic spectrum disorders aims at teaching these children how to control behaviors seen as socially aberrant, such as ‘stimming’ (the term used by people within this community to describe self stimulating behaviors such as rocking and flapping which are used as a means of self soothing), and how to mimic ‘appropriate’ neurotypical behaviors such as maintaining eye contact and learning to engage in social small talk and group activities. Discussion and debate between Autistic activists involved with the Neurodiversity movement and those involved with organizations in pursuit of a ‘cure’ often centers around applied behavioral analysis therapy, which is to date the “most scientifically proven . . . treatment for autism” (Baker, 2006, p.27).
ABA therapy is a full-time intensive treatment program which specifically aims to break neurotypical behaviors down into step by step segments and then to teach the autistic child when and how to imitate whatever behavior is seen to be appropriate for a given context (i.e. behavior for sitting in a classroom, interacting with a peer, etc.) (Baker, 2006, p.27). Dana Baker points out that, while this therapy can be very helpful for those people on the more involved end of the autistic spectrum, “for those for whom autism is a more manageable difference, ABA therapy can represent oppression of essential elements of their personality and thought process that discriminates against all but the more neurologically typical thought and behavior patterns” (2006, p.27). Gareth Nelson, who has Asperger’s Syndrome and is one of two co-founders of Aspies For Freedom, a web based Autistic rights organization, states that, although it is possible for many people on the milder end of the autistic spectrum to force themselves to stop stimming, to do so requires constant self vigilance of a level which limits the individual’s ability to absorb and process information and interact with his/her environment. In an article describing the first Autistic Pride day, organized by Aspies for Freedom, Nelson says: “Any behavior can be stopped with enough willpower, but sitting in a classroom focusing on ‘don’t stim’ rather than focusing on the work is obviously harmful” (Trivedi, 2005, p.37).
Other activists point out that, even for people severely affected by autism, ABA therapy has the potential to do far more harm than good because it focuses not on understanding the root causes of behaviors such as tantrums and stimming, but simply on teaching the child to repress these behaviors — often through methods such as forced exposure to stimuli and situations such as forced holding and eye contact which can be extremely painful and disturbing to autistic individuals. This can be especially devastating to non-verbal individuals or individuals whose ability to communicate verbally is severely limited as ‘behaviors’ — i.e. tantrums, screaming, rocking — are often their only real means of communicating the extent of their discomfort. A New York Times article exploring the impact of the Neurodiversity movement on education reports that: ‘Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive. If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers’ (Harmon, 2004).
Furthermore, focusing on behavioral conformity teaches children (and adults) with autism or other emotional, sensory and processing differences, that there is something intrinsically wrong with who they are and the way they experience the world. Because, as pointed out in the Jim Sinclair speech discussed above, it is impossible to separate out one’s sense of self and one’s manner of perceiving and processing the world, to teach someone that their manner of being in the world is bad and must be subjected to constant control and hidden from view is akin to an act of colonization of the self leading to widespread depression and self esteem issues among members of these communities.
In her manifesto “The World I Want to Live In”, activist Amanda Baggs describes this type of behaviorally repressive environment as:
A world in which autistics are expected to submit to being ‘repaired’ . . . a world where autistics are subjected to abuse, ridicule, and punishment for being who we are . . . a world where autistics are given dangerous psychiatric drugs, and treatments which attempt to force neurotypical behavior on autistics. This is a world where autistics who manage to mimic neurotypical behavior well enough to “get by in the world” are often plagued by deep emotional and self-image problems because of the discrepancy between who they are and what they appear to be . . . This is a world where autistics are punished every day for being real, and rewarded for being false (n.d.).
Activists within the Neurodiversity Movement have no interest in learning to be or appear to be the same as ‘neurotypical’ people. They do not want to learn to ‘pass’ and they do not want to be punished, by lack of access to satisfying work, educational, and recreational opportunities and social sanctions, for not passing. They want to be recognized for their differences in such as way that those differences are seen as positive and valued for the alternative perspectives they bring to bear on consensually accepted modes of perception and interaction. They want, as Baggs goes on to say, ‘to live in a world where it is okay, even admirable, to be autistic . . . a world where I can be sure that autistics will be loved and respected as who we are, not drugged or forced to behave as something we are not’ (n.d.).
Historical precedents of the Neurodiversity Movement: Antipsychiatry and the Psychiatric Patient Liberation Movements
The focus on freedom from psychiatric constraint and behavioral conformity within the Neurodiversity movement has its roots in the ‘anti-psychiatry’ movement, (closely connected to and sometimes seen as interchangeable with the “radical psychiatry” movement), of the sixties and seventies. Key proponents of the anti-psychiatry movement included Thomas Szasz, R.D. Lang, Theodore Lidz and Silvano Arieti. This movement primarily concerned itself with the loose use of the label “schizophrenic” as a catch-all for behavior and thoughts perceived as ‘antisocial’ and explored the idea that psychiatric illness was a socially constructed concept. So-called ‘cures’ or ‘treatments’ of ‘problems with living’– the movement’s preferred term for psychiatric or emotional differences and/or crises — were perceived as functioning to make sure that the patient remained ill with no real treatment plan or hope for recovery.
Experiments, such as that conducted by David Rosenhan and a team of volunteers, were conducted in which ‘sane’ people were sent into psychiatric hospitals to discover the extent to which ‘normal’ behavior would be interpreted as ‘abnormal’ once a psychiatric label had been attached to the person exhibiting the ‘normal’ behavior. In his article discussing the results of this particular experiment, Rosenhan (1973) points out that “normality and abnormality are not universal. What is viewed as normal in one culture may be seen as quite aberrant in another’ and comes to the conclusion that ‘psychological categorization of mental illness is useless at best and downright harmful, misleading, and pejorative at worst. Psychiatric diagnoses . . . are in the mind of the observers and not valid summaries of characteristics displayed by the observed” (p. 250).
Further, proponents of the Anti-Psychiatry school of thought questioned whether it was indeed the individuals labeled mentally ill who were unwell or whether it was society itself that was ill, thus rendering the perceptions, experiences, and thoughts of the ‘schizophrenic’ a healthy and necessary response to a distorted cultural environment that ought to be taken seriously and heeded as a social wake-up call. R.D Laing wrote that the labeling of an individual as schizophrenic does not necessarily mean that the person is undergoing:
an essentially pathological process, of unknown nature and origin, going on in his or her body. It does not mean that the process is, primarily or secondarily, a psycho-pathological one, going on in the psyche of the person. But it does establish as a social fact that person labeled is one of Them . . . social adaptation to a dysfunctional society may be very dangerous . . . Our society may itself have become biologically dysfunctional, and some forms of schizophrenic alienation from the alienation of society may have a sociobiological function that we have not recognized . . . There is no such ‘condition’ as ‘schizophrenia,’ but the label is a social fact and the social fact a political event (1967, p.83).
Thomas Szasz further theorized institutionalized psychiatry and the social services system as a means of social control, calling it a form of ‘social tranquilization’ (1968, p.259). He acknowledged that these institutions do, in some ways, fulfill basic human needs and aim to alleviate suffering, but stated that it was in part precisely because these systems have the power to give or withhold necessary services and goods from their clients that they are able to wield both subtle and blatant forms of control over the lives and minds of those who come under their care (Szasz, 1968, 259). Thus, he wrote, ‘these systems are admirably suited for the purpose of keeping “in line” potentially discontented members (or groups) of society’ (Szasz, 1968, p.260). Determining who falls into the category ‘well’ and who falls into the category ‘sick’ is one of the primary ways in which institutionalized psychiatry functions as a form of social control. The standards according to which one is categorized as ‘well’ or ‘sick’ vary according to the social values and needs of a given time and place and perform specific social functions. What was at one point in time considered within the range of normal behavior or mental functioning can at another be re-classified as a sign of illness necessitating that an individual exhibiting signs of the now disfavored ‘condition’ be subjected to medical and/or governmental control (through the form of government provided social and medical services).
Writing in 1959, Szasz saw society as engaged in a massive process of re-categorization in which a multitude of behaviors previously accepted as normal, if annoying, or as ‘sinful’ are being brought under the domain of institutionalized psychiatry. He wrotes: “[Over the last sixty or seventy years] a vast number of occurrences were reclassified as “illnesses.” We have thus come to regard phobias, delinquencies, divorce, homicide, addiction, and so on almost without limit as psychiatric illnesses. This is a colossal and costly mistake’ (Szasz, 1968, p.230). This process of reclassification primarily benefits the social/economic institutions of psychiatry, medicine, and associated services, rather than the individuals who gain the designation ‘ill’. These reclassifications are made more problematic because of our tendency to assume that such classifications are ‘natural’ rather than constructed, that a designation of ‘mentally ill’ speaks to something unchangeable and essential about a person’s psychobiological make-up which would necessitate medical control and supervision in any social environment, rather than seeing that person’s differences as simply making it difficult for them to maneuver within the current social environment or potentially as caused or aggravated by the social environment itself (Szasz, 1968, p.230).
“Brains that Work a Little Bit Differently“: Valuing the Gifts of Neurodiverse Minds.
The present day Neurodiversity Movement does not dispute that people who can be classified as having conditions such as attention deficit disorder, attention deficit hyperactivity disorder, bipolar disorder, Tourette’s, dyslexia, schizophrenia and so on have physically based neurological differences (Trivedi, 2005, p.38). In fact, the physical basis of their differences is one of the things used by members of this movement to make the case that these differences are simply another form of human diversity or potential for human consciousness, rather than a mental illness. Harvey Blume, in an early article exploring the ideas behind the Neurodiversity movement, summed up the message put forth by the Institute for the Neurologically Typical and other activist websites/organizations in the following way: “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?” (1997).
Recent developments in neuroscience seem to support the idea that neurological difference across a wide range of areas is normal and does not necessarily have to be equated with deficiency. In an article entitled, ‘Neurodiversity Forever: The Disability Movement Turns to Brains’, neurologist Dr. Antonio Damasio, was quoted as stating that:
What all of our efforts in neuroscience are demonstrating is that you have many peculiar ways of arranging a human brain and there are all sorts of varieties of creative, successful human beings. For awhile it is going to be a rather relentless process as there are more and more discoveries of people who have something that could be called a defect and yet have immense talents in one way or another (Harmon, 2004).
Members of these communities see themselves as possessing particular qualities which have the capacity to function as gifts and to provide valuable contributions to society given the right circumstances. Antonetta writes that the World Wide Web, which has proved such an incredible resource for communication among neurodiverse individuals:
drew a great deal of inspiration from an information system called Xanadu, developed by a hyperactive adult named Ted Nelson. Nelson coined the term hypertext and conceptualized a universe of linked information’ mirroring his own mental activity which he says would be best described as a ‘hummingbird mind’ which darts around drawing quick and diverse connections among many apparently disparate things (2005, p.7).
She also draws attention to the fact that bipolar disorder, (or manic-depression- a term which, though medically out of date, many manic-depressive people prefer as it more accurately describes their experiences), has a long history of association with creativity, a connection discussed at length by Kay Redfield Jamison in her book Touched By Fire: Manic-Depressive Illness and the Artistic Temperament (cited in Antonetta, 2005, p.8).
Conducting a poll of what she calls her ‘online tribe’, other bipolar people participating in specialized listservs and chatrooms, Antonetta discovered that, like her, most responders like their minds and the gifts their bipolarity brings them. One man she quotes says: “I choose not to look at bipolarity as an illness at all. In fact, I couldn’t imagine myself as not being bipolar, nor would I want to be. The bipolar is a strong component of who I am, and I do not wish to be anyone else but me” (p. 89). Another respondent wrote, “I feel, and cause others to feel . . . Touched, the life of the imagination is the real life” (Antonetta, 2005, p.90).
Temple Grandin, a well know autistic activist who teaches at Colorado State University, writes that students with Asperger’s or high functioning autism often excel at maths, sciences and music. These students have enormous potential for success if given the appropriate assistance and channeled into appropriate professions as they go on to college and out into the workforce. However, due to the fact that these students have received the label of ‘autistic’, school systems, social services and parents often neglect cultivation of the students’ gifts and focus instead on their deficits. She cites one case in which a student was denied a place in his school’s gifted program due to his autistic label, although he qualified to participate by dint of his IQ and his academic performance. In another case, a parent told her they were so upset by their child’s poor social skills that they had decided not to allow him to take a longed for computer course. These are the types of decisions which she sees as keeping high functioning autistic and Asperger’s people from achieving their potential and making positive contributions in the fields at which they excel (Grandin, n.d).
The fact that people involved in the neurodiversity movement see themselves as gifted by and take joy in many of the qualities associated with their neurodiversity does not necessarily indicate a wholesale rejection of therapeutic intervention, including the judicious use of psychiatric medicines to modify ‘symptoms’ they find overly uncomfortable, dangerous, or which interfere with their ability to accomplish their goals and maneuver in the world as it is presently constructed. As Antonetta writes:
Of the people I know who qualify as neuroatypical, including myself, I do not know any who refuse medication or therapy . . . I take medication and have for some thirty years. I have three tan vials, three neurocorrectors — primarily a drug called Depakote — that tether me to your world wholly, if you live on the other side of this divide. When prescriptions run out, or I misplace hand luggage, the panic’s overwhelming, childlike. I have no desire to develop more word infatuations and word aversions and more of other things, as well (2005, p.9).
The point is not to eschew all forms of help regardless of the negative impact this might have on one’s life, but to make sure that choices regarding medication and therapy are truly that — choices. While many neurodiversity activists, such as Antonetta and Amanda Baggs, are quite up front about their use of medication and/or social services, they are also adamant about their right to control the extent to which they make use of these resources and their desire never to be overmedicated. As Antonetta puts it:
I don’t often remember what it feels like to be suicidal, and while I’m manic from time to time and depressed, I don’t conjure up devils. But I would not choose ever to become overmedicated or to leave my tribe. I like my mind the way it is, like a striving city, or a small town at least, noisy and architectural (2005, p.89).
While largely in favor of making ‘patient’-controlled use of symptom modifying medications and therapies widely available, they are also adamantly opposed to ‘cure’ oriented activism and research, fearing that a focus on curing autism and other neurological differences — along with increasingly detailed prenatal testing and the pressure often placed on neurodiverse populations in which difference can be clearly linked to heredity not to have children — will “drag society into the murky zone of eugenics” (Trivedi, 2005, p.38). Reflecting on this possibility, Antonetta echoes the sentiments of many neurodiversity activists when she writes: ” . . . it frightens me, the easy possibility of erasure of my own way of thinking” (2005, p.10).
It is the rigidity of social structures and expectations designed with ‘neurotypical’ people in mind which turn the differences associated with neurodiversity into disabilities. Arthur Caplan, director of the University of Pennsylvania Center for Bioethics, comments “One definition of disease is that it destroys your ability to function — to live independently, feed and groom yourself and get around. Any disorder that inhibits these activities . . . is robbing a person of an acceptable quality of life and should be treated” (Trivedi, 2005, p.38). Most people within the neurodiversity movement would agree with Caplan’s definition of a disease. However, neurodiversity activists believe that it is hegemonic social structures, discourses about normality and cultural attitudes and/or behavioral expectations which create barriers prohibiting neurodiverse individuals from exercising individual choice and personal development and thus, it is the structures and discourses which are in need of treatment and a cure, not the individuals.
The Cultural Construction of Disability
Susan Wendall, writing in the context of the wider Disability rights movement, and Dana Lee Baker, who specifically addresses autism and discussion surrounding the relationship between neurodiversity/neurological disability and the public sector, both address the ways in ‘disability’ is constructed and maintained through social arrangements and discourses about normality. Though Wendall’s work is primarily focused on physical disability, several of what she points to as key factors in the social construction of disability hold true for the transformation of neurological differences into disability as well. These are: the pace of life, expectations for performance, the public/private divide, and failure to organize society so that people are able to get the ‘amount and kind of help they need to participate fully in all major aspects of life in the society, including making a significant contribution in the form of work” (Wendall, 2006, p.26).
Increases in the pace at which one is expected to be able to function and produce works to create disability in part by setting the bar for fast, efficient production and multi-tasking abilities higher and higher so that more and more people are unable to function effectively at the required pace and with the expected levels of productivity. Thus, differences which might be minor in a more slow paced culture, or one in which expectations for pace and production are more flexible and oriented towards the needs and styles of individuals, become disabling conditions which affect one’s ability to provide for oneself and pursue one’s goals. Attempting to keep up with these expectations of pace and performance can also worsen the pre-existing difference/disability as well as negatively impacting a person’s quality of life by “decreas(ing) the energy available for other life activities, which may upset the delicate balance of energy by which a person manages to participate in them and thus exclude her/him from these activities” (Wendell, 1996, p.25).
The public/private divide creates a context in which the public world is seen as “the world of strength, the positive (valued) body, performance and production, the non-disabled and young adults” (Wendell, 2006, p.26). In such a context difference, perceived as ‘disease’, becomes something to be hidden, a sign of weakness not be discussed. This leads to an environment in which people are uncomfortable explaining and exhibiting their differences openly and asking for needed assistance and accommodations which then increases the extent to which their difference is experienced as a disability (Wendell, 2006, p.24- p.26).
Wendall writes that social expectations concerning the pace of life, productivity and the levels of help that are considered reasonable and normative are set with a generic, unrealistic ‘paradigm citizen’ in mind (2006, p.27). This paradigm citizen is, as she defines him, modeled on a strong, healthy, physically and neurologically normative young man. She points out that it’s important to remember, when thinking about the different types of help people with disabilities or differences may need to function in the mainstream world, that “most industrialized societies give non disabled people . . . a lot of help in the form of education, training, social support, public communication and transportation facilities, public recreation and other services” (2006, p.27). It is only when the type of help needed to perform a particular activity differs from the help offered to ‘paradigm citizens’ that this help is seen as a special service which signifies disability and dependence. Yet, much, though not all of the help that people with disabilities need is required because their bodies were damaged by social conditions, or because they cannot meet social expectations of performance, or because the narrowly conceived physical structure and social organization of society have placed them at a disadvantage; in other words, it is needed to overcome problems that were created socially (Wendell, 2006, p.27).
Dana Lee Baker looks at the ways in which public programs and public sector services are affected by and attempt to respond to the challenges raised by working to simultaneous address concerns raised by neurodiversity and neurological disability. She defines the term neurodiversity as those aspects of neurological difference which are experienced as an integral part of the identity of an individual/community and which are ‘elective’ insofar as the individual/community sees these differences as positive and does not seek medical intervention to modify or eradicate these differences. The term ‘neurological disability’, on the other hand, refers to “impairment of socially determined major life functions caused by observable, diagnosable differences in an individual’s brain” (Baker, 2006, p.15). She writes that increasing diversity of many sorts within the U.S. has forced public programs to be increasingly creative and flexible in order to address a wide variety of needs, concerns, and viewpoints.
Within the current social context, in which the call for positive acceptance of traits associated with neurodiversity has become a dominant cultural trend within affected communities, public sector efforts to design and administer programs and services for these communities has been complicated by the necessity of figuring out how to “create affordable service packages and program structures that allow those who wish to seek intervention to do so while assuring that those who wish to decline treatment are allowed to do so . . . Distinguishing between and simultaneously supporting these two elements, therefore, is an especially telling challenge for modern public administrators” (Baker, 2006, p.27). Diversity based initiatives and programs on the level of social policy and administrative strategies traditionally aim to “create programs which that assist those with categorical differences to integrate and to construct broad-based rights initiatives to prevent- or at least dissuade- discrimination on the basis of categorical difference” (Baker, 2006, p.15). This means, in part, that identifying oneself as belonging within a particular category of difference (receiving a diagnosis) is essential in determining one’s ability to receive services and accommodations. This can cause difficulty on a number of fronts, not least of which is the fact that receiving and sharing a psychiatric label can have many negative social consequences.
Fear of negative consequences means both that individual adults are often loathe to seek out or make public psychiatric labels and also that doctors are often loathe to apply labels with particularly negative social connotations, such as autism, to children. Though this is well meant on the part of physicians, who want to avoid dooming the child to a lifetime of being perceived as their label rather than themselves, it restricts a child’s ability to have access to early intervention and school based programs and therapies which teach important coping skills early and thus work to prevent increasing ‘disability’ as the child develops (Baker, 2006, p.19). This is true not only for the development of and participation in programs aimed at minimizing difference, but also in terms of the potential development of programs aimed at incorporating unmodified neurodiversity (Baker, 2006, p.19). As Baker writes, “Since the public sector’s role in both supporting neurodiversity and mediating the effects of neurological disability depend on an identified population of individuals with autism, systemic differences in paths to diagnosis impair equitable management of diversity in the public administration of disability related programs” (2006, p.19).
Activism and Experiments in Neurodiverse Living
Neurodiversity movement activists work on a number of different levels to counteract the structural inequalities preventing neurodiverse individuals from obtaining necessary services, the pursuit of their personal goals, and full participation in society to the extent that such participation is desired. Here again they draw on models of radical ‘patient-led’ organizations which developed out of the Antipsychiatry Movement of the sixties and seventies. Organizations such as the Mental Patients Liberation Front, Project Release and the Mental Patient Alliance were led by ‘mental patients’ (most of whom who had experienced previous institutionalization and unwelcome levels of ‘forced’ medication) for ‘mental patients’ (Hunter, n.d., unpaged). Such groups had a three pronged approach to creating change. This approach began with consciousness raising among both mental patients and the general public about myths regarding mental illness and the abusive and coercive aspects of psychiatry and forced psychiatric medication. It also encompassed extensive efforts to formulate and develop ‘patient controlled alternatives’ to the mental health system (Chamberlin, 1978, p.63). Judi Chamberlin describes these alternative structures in the following way:
Nonprofessional, client controlled services don’t divide people into “sick” and “well,” “helper” and “helped.” They see each person as having a combination of strengths and weaknesses, and the need for help in one area does not negate the ability to help others also . . . In order to achieve those ends, people have to recognize their own strengths and abilities. They have to discover that sometimes there are no “experts” to turn to. People who seek out these alternatives, have experienced the harm that the “experts” and their methods can cause (1978, p.63-64).
The idea behind experiments in patient controlled alternatives (which included both residential and day programs) was that people who had experienced ‘problems in living’ themselves would be best equipped to understand and help other people experiencing similar types of challenges. While nearly all such programs continued to use patient-friendly psychiatrists and counselors as consults and assistants in their facilities, it was the patients who ran and organized the facilities, planned activities, problem-solved difficulties and disputes, and helped counsel each other. Each patient or ex-patient was seen as having the sovereign right to determine what kinds of treatments and services they might want to make use of, including the right to decline any treatments or services at all. Chamberlin explains that, in patient controlled facilities, “the definition of need would come from the client. People behaving in ways that other people found troublesome but that they themselves found satisfactory could not be forced to partake of any services, no matter how humane, against their will” (1978, p.19).
This held true regardless of how far from consensual reality an individual’s experience of the world might appear to be because, as she goes on to say, “the social control functions of the current psychiatric system cannot be carried over into the alternative model, or it loses its alternative quality” (Chamberlin, 1978, p.19). The belief that the extent of difference one experiences should not be a factor in determining to what extent one should be subjected to outside control and forced compliance with drug and other therapies carries over into the neurodiversity movement of today. Amanda Baggs writes that, in the neurodiversity tolerant world of the future she envisions, she “want(s) those autistics who are incapable of working to still be able to live a dignified life the way they want to live it” (Baggs, n.d, unpaged). Finally, because they understood that so-called mentally ill people would often find themselves in the grip of institutionalized medicine for a variety of reasons, including lack of access to alternatives, patient led organizations also worked to reform traditional in-patient and out-patient psychiatric care (Chamberlin, 1978).
Consciousness raising efforts on the part of autistic neurodiversity activists have led to increased interest in developing and implementing ‘autism friendly’ therapies, school programs and retreats, such as the ASPIE school (Autistic Strength Purpose and Independence in Education), Autreat — an annual conference for people with Autistic Spectrum disorders, and the experimental early intervention programs being tested at the Kennedy Kreiger Institute in Baltimore, MD (Trivedi, 2005, p.39). These programs use techniques and create environments focused around the dual goals of affirming that ‘it is O.K. to “act autistic”’ while providing advice and information on ‘how to get by in a world where it is not’ (Harmon, 2004).
At the A.S.P.I.E. school, children are ‘encourage(d) (to) learn social skills by choice . . . We deconstruct why (neurotypical) people make eye contact, for example, and show why these behaviors will be useful for students who want to live independently and get a job in the NT world where they are a minority’ (Trivedi, 2005, p.39). Children are not punished or looked down upon for exhibiting autistic behavior but are taught identify and interpret the emotions and sensory experiences which cause them to become overwhelmed and then to cultivate ways in which to use their strengths to address aspects of living which cause them difficulty and confusion (Harmon, 2004). Autreat, a neurodiversity oriented conference which is run by and for people on the autistic spectrum, provides colored tags for people to wear indicating whether they wish to be approached for conversation or not and hosts discussions regarding ‘how to deal with your neurotypical parents’ and parsing the risks and benefits of making the decision to ‘come out’ as autistic and free oneself from excessive self enforced behavioral conformity (Harmon, 2004, Trivedi, 2005, p.39).
The Kennedy Krieger Institute programs provide autism friendly environments in which toddlers are taught basic language and interaction skills at their own pace and without negative consequencing for autistic behaviors and needs. Beyond this, even a cursory internet search will turn up a good deal of information regarding ways in which to create an autism friendly environment in the classroom and how to best teach to autistic learning styles. These techniques are based on information provided by autistic individuals and activists through consciousness and include such tips as: ‘Stop talking if you observe stereotypical behavior such as handflapping or humming (a common sign of overload) . . . Know that background stress and noise will prevent communication . . . Do not insist on eye contact . . . reduce flickering lights and fluorescent lights . . . Do not push the autistic student to behave as a neurotypical . . . ’ (Lynn, 2007). Many examples of schools oriented towards cultivating ADD/ADHD friendly learning techniques and classrooms in which the characteristics associated with ADD/ADHD are viewed as positive also exist and, although less widely theorized and disseminated at this point, material discussing bipolar friendly classrooms and teaching methods is also being developed.
“There is No Madness but That Which is in Every Man”: Notes Towards a Manifesto
The struggle neurodiversity activists face as they attempt to create a world in which they are not ‘punished every day for being real, and rewarded for being false’ can perhaps best be seen as a culture clash taking place between the dominant culture(s) of ‘neurotypicals’ and the growing subculture(s) of the ‘neurodiverse’. Cultures, as Claudia Strauss and Naomi Quinn define them, develop out of systems of shared meaning (1997). Cultural meaning, they write, is “the typical (frequently recurring and widely shared aspects of the) interpretation of some type of object or event evoked in people as a result of their similar life experiences” (1997, p.16). Because of their differing experiences with perception, emotion, and differing needs for or ways of understanding personal interaction, community, body language, etc., neurotypical and neurodiverse people have developed different systems of cultural meaning. Autistic people frequently express this feeling of cultural difference; calling for non-autistic people to approach them ‘as if we were aliens, not as if we were damaged versions of yourself’ (Baggs, n.d., unpaged). Calls to be seen as alien beings and to be treated with the respect which would be extended towards treasured visitors from a vastly different culture proliferate wildly in neurodiversity literature, beginning with the speech marking the beginning of the movement, Jim Sinclair’s ‘Don’t Mourn for Us.’
Sinclair encourages parents of autistic children to consider their child an ‘alien child . . . stranded in an alien world’ . Because the autistic child is alien to this world, he writes, s/he can not be expected to have the same set of shared meanings as non-autistic people have. Rather than reading the child’s attempts at communication (or what seems to be a lack thereof) through their own assumptions and expectations, parents of autistic children should “give up the certainty the comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world” (Sinclair, 1993). Perhaps it is this call for neurotypicals to ‘give up the certainty that comes of being in your own familiar territory, of knowing your in charge’ that makes the neurodiversity movement appear so threatening, or just so plain out there, to many people who identify with the neurotypical world view and to parents of neurodiverse children who hope for a cure. After all, as Foucault (1988) writes, what frightens us most about the ‘madman’ is that we see ourselves reflected in him (or vice versa) and fear succumbing to our own madness, losing control and/or losing the self we have considered our own for so long and entering an unknown reality. “There is no madness,” he writes, “but that which is in every man” (p. 26).
None of us would wish to be mad in the sense of being completely isolated in our own minds, lost to the people and world around us and unable to communicate our emotions, perceptions and thoughts. As Antonetta writes, ‘Many things regarded as pathologies can be terrible, rendering a life as most people would define it — with things like autonomy and connection — impossible . . . There exist severe, low functioning autisms and other cases, like untreatable manic depressions . . . that probably warrant the term tragedy’ (2005, p.12). No one, as ‘cure’ oriented parents sometimes fear, is trying to withhold therapy, medication or any other intervention from people whose lives can be improved by these things and who (as adults) desire to make use of them. Beyond that, however, what is so scary and/or terrible about a world in which all of us, neurodiverse and neurotypical alike, can speak openly and honestly about our feelings, experiences and perceptions without fear of repercussions? What actual harm is it if some of us make more eye contact or less than other people, if we rock, pace, laugh or cry at odd times at seemingly obscure things, make wild proclamations or refuse to speak, talk about or even to the people who populate our heads, or simply ‘talk too long about washing machines or the roots of square numbers’ (Harmon, 2007)?
Such things might make the ‘neurotypically’ identified people uncomfortable. They might feel confused, torn between staring and looking away, uncertain how or if to respond to these weird people doing and saying weird things. They might wonder if they should intervene. Eventually, feeling confused, uncomfortable and possibly annoyed, such people might find themselves leaving the vicinity of the weird person, retreating to a ‘safer’ place. Yet these things — social confusion, discomfort, uncertainty, feeling forced to ‘retreat’ to safer spaces — are things many neurodiverse people deal with on a daily basis. Perhaps, rather than either group imposing its standards and enforcing conformity to its own preferred social codes, both groups need to meet each other half way and agree to be a little uncomfortable while working to minimize levels of discomfort severe enough to prevent learning and working towards self actualization- whatever that might mean to a given individual. Luckily, as Strauss and Quinn go on to explain, cultural meaning and the social standards and structures connected to it, are open to change. ‘Meanings’, they write, “are the product of current events in the public world interacting with mental structures, which are in turn the product of previous such interactions with the world” (1997, p.6). As the neurodiversity movement works to make the experiences, humanity and potential contributions of many different types of minds understandable to the wider public, our automatic assumptions about and responses to difference are likely to undergo a slow change. Already we can see the beginnings of structural changes which have been brought about through changing understandings regarding the need to take what neurologically different people are saying about their needs, desires and potentials seriously. If, as humans, we continue to find the courage to share ourselves with each other and to listen to what we all have to say, more change is likely in the future.