“The human being who would be an original is not the one who has a great private thought within him that he then makes public. The original is the one who can change the very language that we share, in which we think, and which is our communal version of the world, both inner and outer.”

-Ian Hacking, Historical Ontology

 

 

For better or for worse, a kind of body called autism has been carved, and carved out across a transnational terrain of medicines, cultures, economies. Since the humble staking of this diagnostic category on but a handful of specific cases in the 1940s, it has become variously a “spectrum”, an “epidemic”, a “tragedy” for parents, an object for “integration”, a subject for “treatment”, a cultural phenomenon of “neurodiversity”, and in some emergent quarters a novel kind of “native language”. Why has this happened? From who and where come these webs of discourse, and what do words and people do in their name? How does autism work?[1]

 

            Field Work Question

The above are big questions which deal with an example of what Michel Foucault called throughout his lectures “abnormality” (Foucault, 2006; Foucault, 1999). A field work engaging this terrain, how autism works, has far too many places to possibly go. The questions this field work asks are then very particular. How are people identified and identifying as autistic adapting new media tools and spaces to their bodies and in so doing making-up what some call “autistic culture”? How are virtual spaces being used to do autism not as a label or diagnostic repression to resist, but rather as a state of being with its own kinds of desirability and virtues of personhood to be enjoyed? As particular networks and organizations of “experts of disablement”[2], what do communities like the Autistic Liberation Front (ALF) identify as real, true, and ethical about their way of being and the kinds of treatments and discourses which come to surround it? Do networks and organizations like ALF offer an original kind of social movement or have claims to a “native voice” pertaining to variations in bodily structure been heard before? Is virtual resistance consequential and, if so, in what respects?

 

Operationalisation of Major Concepts

Autism, in the diagnostic discourse, is “characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities”.[3] The discourses which have carved autism out as it is identified today posit its population as inhabiting a spectrum which includes people bearing some or all the characteristics of these diagnostic pillars and with different degrees of severity. In the crudest terms, this spectrum presents “high functioning” and “low functioning” autistics as well as individuals who are “subclinical” (i.e. are not autistic enough for the official diagnostic honors but are autistic enough to chart on in one or two areas of its symptomatic terrain) (Schreibman, 2005).

Of course, what distinguishes these is all rather fuzzy and contentious. For the purpose of this field work, however, which engages with autistics “functional” enough to provide accounts of their self on new media domains, I am concerned with “higher” rather than “lower” functioning figures of autistic culture. “Low functioning” autistics are considered here as those which require a proxy to give an account on/of/for their behalf. Such individuals are of concern here only inasmuch as they may become figures of discourse produced by other, “high functioning” autistic individuals or inasmuch as this crude binary itself becomes subject or object of deconstruction in autistic liberationist discourse.

Like Ian Hacking’s discussions of “transient mental illnesses” (illnesses which come and/or cease to be identified in various ways in different cultures, places, and times) I am not concerned with whether or not autism is a “real” illness or disability.[4] Equally, I am not aiming to advance a claim to the source of the most truthful knowledge on what constitutes the legitimate autistic identity. Moreover, I am not endeavoring to elucidate the most righteous way for treating, performing, or making-up the autistic identity in an ethical way. My own experience working with autistics on all ranges of the spectrum are enough to teach me any beacon I light will fail some beings regardless. Rather, I am more interested in tracing and beginning to account for the forms and contents of forces, such as moral capitals, at play and at stake in the hegemonies of identity (abnormality) and social change (emancipation) in which the statements of autism are set; which inhabit and make-up the conditions of their possibility.

Hegemony is here understood as an empty space filled up with the contingent struggles over what become universalized constructions of history, people, and their intertwined course (Butler, Laclau, & Zizek, 2000). That is struggles over the production and circulation of signs and the organizations of people and things as they make and are made by flows of power directed toward aims embodied in particular regimes of the sign. These organizations are stratifications of bodies and the words for bodies all positioned and positioning around, toward, or away from dense signs of desirability and undesirability, those things or that thing which Deleuze & Guattari call the “godhead” of a civilization or community, its worshipers, and their “scapegoats” (Deleuze & Guattari, 1987).[5] To rephrase, hegemony is the process of struggle and the process of forging the definitions of struggle over the forms and contents of identity and their relation to the historical motions of social change.   

With respect to the abnormal identity, Foucault has observed, the godhead is development—progress—for the abnormal body, the developmentally disabled body, is the very vital sign of the godhead’s lack (Foucault, 2006).[6] These games of culture and organization which dance or ossify around the godhead can be analyzed in terms of anatamo-politics (the local possibilities, potentials, and consequences of struggle between particular embodied actors in particular kinds of social relations, i.e. the “microphysics” of power) and bio-politics (the broader cultural conditions, historical movements, and governmental tools and strategies pursued in the management of populations, i.e. what I, gullibly perhaps, am tempted to call the “macrophysics” of power. These two are not opposed. They do not happen in a particular order. They are not even binary. Rather together they form the metaphysics; a ‘yin’ and ‘yang’, a Tao and a Te of power. This is because both stages of politics perform in their particular ways as generators of potential, limitation, and outcomes for people and the world.[7]

 

            Outline of the Field

The field in this case is composed of dense virtual networks defined by their participation in making-up the hegemonic struggles of “autistic culture”. In one sense the “field” is that of “new media”—that rather amorphous entity called colloquially, sometimes derisively, and far too often with much too much utopian gusto, “the internet”. [8] For a field work “the internet” is too big a place. Thus, I endeavor to perform my participant observation at a very particular virtual place, or rather, two particular places.

First, the headquarters of the Autistic Liberation Front, which not only inhabits the curious virtual platform known as Second Life, but which hosts there at its organizations headquarters weekly activist meetings for those interested in “autistic liberation”.[9] Additionally, ALF hosts a second virtual gathering once a week for recreation at what its members call “Club Nerd”. I hope through participant observation of words performed at these sites to begin to engage and analyze autism as (an original?) conversation. This is not only one place where autism works, but also the analytical prescription offered by probably the most sober of the Foucaultian inspired pragmatists, Ian Hacking

Second, the online video text, “In My Language”, was published to youtube.com in January of 2007, on Martin Luther King Jr. Day no less. Not only was it produced and published by a charter member of ALF, but to my current knowledge it is the first time autism is published as a “native language”. While the video itself as a point of mutation in autistic discourse is of enormous interest, I wish to bracket a semiotic/discourse analysis of the video text in order to focus analytical attention to the several thousand viewer comments the video has elicited from, it seems, primarily non-autistic (or “neurotypical”) people. This content analytical project is intended as both separate and supplemental to the field work at ALF. Moreover, it serves to begin the long process of tracing the signs of autistic discourse produced by ALF bodies to their points of assembly and interaction with other constitutive bodies of reality, truth, and right.

 

            Outline of Planned Activities

1.      Participant Observation (5 EC)

a.       Observation of weekly ALF activist and recreational meetings

b.      Discourse analysis of texts produced

c.       Short literature review on self-advocacy and autistic culture

d.      Short literature review on virtual ethnography and digital networks

e.       Field work report

f.       Build project into RMSS thesis proposal

2.      Content Analysis (5 EC)

a.       Survey literature on content analysis (to follow assigned readings for RMSS course, “Content Analysis”)

b.      Initial survey of viewer comments to online video text, “In My Language”

c.       Design code book; collect and organize data (to be assisted by Jan de Ridder, ASCoR)

d.      Data entry and Interpretation of Results

e.       Submit content analysis report

f.       Build project into RMSS thesis proposal

3.      Prepare paper on social cohesion and disability studies for (potential) publication in upcoming anthology devoted to said topic (5 EC)

a.       Analyzing data collected in spring 2007 on previous field work engagement

b.      Applying theoretical literature covered during Independent Reading Course

c.       Survey research on social cohesion paradigm as it pertains to the field of developmental disability

d.      Begin career as a publishable social scientist and scholarly antagonist of capitalism

 

Relevance of Field Work to “the” Program

Without ado, I feel this line of research and these fields for data collection are not merely novel, but rich in methodological, theoretical, and ethical concerns both current in and traditional to anthropology, sociology, communication science, and cultural analysis. Beyond the relevancies to these fields embedded in the discussion above, I feel the biggest relevancy to “the” RMSS program of what may soon cease to be the ISHSS is its interdisciplinary scope, its multi-methodological assemblage, and its critical pragmatic impulse. This is reflected not merely in my choice of literatures and fields, but in my constitution of tutors from both the Amsterdam School of Social Science Research and the Amsterdam School of Communication Research. Moreover, and with respect to what some might call “normative” concerns lingering around terms like “pragmatism” and “progress”, I feel this line of research begins to prepare rich ground for tapping successfully into and ultimately contributing to contemporary discourses of “the Left” which aim to stage the analysis of new social movements using a combination of post-marxist, post-structuralist, and psychoanalytic theoretical tools (Butler, Laclau, & Zizek, 2000; Howarth, Norval, & Stavrakakis, 2000).

 

            Method of Data Gathering and Analysis

In the case of participant observation at ALF, data will primarily take the form of the conversations and textual interactions produced in the context of ALF meetings. Because the nature of a chat log eliminates the need for transcription beyond a “copy and paste”, this frees more time for close analysis of the text generated. Analysis of this text will pay particular attention to the three dimensions of discourse which Ian Hacking has in his texts an “dynamic historical analysis” offers as the objects and subjects for research, namely what is posited as “real”, “true”, and “right” in given sites, how these are posited, and why. For the purpose of future research and analysis, points where these conversations of autism intersect other epistemes and conversations on autism or related phenomena will be briefly noted and marked. These conversations will be reviewed and analyzed on an ongoing basis, a task whose time is facilitated by the fact that ALF meetings are bi-weekly events.

Because ALF members meet on two auspices, “activist” and “recreational”, two text logs will be maintained for analysis. Additional, impressionistic notes will no doubt be taken down during these ethnographic engagements. These will be collected in a text document and will their selves be reviewed on an ongoing basis in order guide the questions, scope, and focus of the participant observation as it evolves into a larger research project.

In the case of the content analysis, data collection will initially involve surveying the viewer comments to the online video text “In My Language”. The text based comments will be copied and pasted into a format where they might be coded and analyzed. With the help of Jan de Ridder a code book will be developed in order to carve out and organize the stratification of viewer responses to claims of “autism as a native language” and shape them into analytical bits, frequencies, and aggregates. The aim shall be not only to make-up a typology of responses and participants to this particular autistic conversation, but also to being to trace and account for what Nikolas Rose might casually call its “topography” (Rose, 2007). 

Finally, as stated above, data has already been collected for the publishable research paper on developmental disability and social cohesion currently under draft. The abstract which was garnered the invitation is attached. Analysis in this case has been taking a grounded theoretical form and supervision has been ongoing.[10]

            Time Line

May: Draft and submit paper on developmental disability and social cohesion, obtain relevant permissions for virtual ethnography (second life, ALF, ISHSS) – deadline, May 28th

June: Wedding

July: Virtual ethnography, content analysis – deadline: 31st, Submit first draft RMSS thesis proposal to tutors

August: Virtual ethnography, content analysis – deadlines: 8th, submit final paper for Independent Reading Course; 15th, submit content analysis report; 31st submit second draft RMSS thesis proposal to tutors.

September: Virtual ethnography – deadlines: 4th, submit field work report on virtual ethnography; 12th submit RMSS thesis proposal for final approval

 

Budgeting

I am more than happy to continue paying my own internet bill.       

 

Bibliography

Butler, J., Laclau, E., & Zizek, S. (2000). Contingency, Hegemony, Universality. London & New York: Verso.

Deleuze, G., & Guattari, F. (1987). A Thousand Plateaus: Capitalism and Schizophrenia. London & New York: Continuum.

Foucault, M. (1999). Abnormal: Lectures at the College De France, 1974-1975. New York: Picador.

Foucault, M. (2006). Psychiatric Power: Lectures at the College De France, 1973-1974. Hampshire: Palgrave Macmillan.

Goodley, D. (1999). Disability Research and the “Researcher Template”: Reflections on Grounded Subjectivity in Ethnographic Research . Qualitative Inquiry , 5(1) pp. 24-46.

Grinker, R. R. (2007). Unstrange Minds: Remapping the World of Autism. New York: Basic Books.

Hacking, I. (2002). Historical Ontology. Cambridge, MA & London: Harvard University Press.

Hacking, I. (1998). Mad Travellers. Cambridge, MA: Harvard University Press.

Howarth, D., Norval, A. J., & Stavrakakis, Y. (2000). Discourse theory and political analysis: Identities, Hegemonies, and Social Change. Manchester and New York: Manchester University Press.

Mitchell, S. (1988). Tao Te Ching. New Tork: Harper Collins.

Oliver, M. J. (1999). Capitalism, disability and ideology: A materialist critique of the Normalization Principle. In R. J. Flynn, & R. A. Lemay, A Quarter-Century of Normalization and Social Role Valorization: Evolution and Impact (pp. 163-174). Ottawa: University of Ottawa Press.

Rose, N. (2007). The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press.

Schreibman, L. (2005). The Science and Fiction of Autism. Cambridge, MA: Harvard University Press.


[1] See Grinker, R. (2007); Schreibman, L. (2005) for a historical discussion of autism as a diagnostic category since the 1940s.

[2] See Oliver, M.J. (1999); Goodley, D. (1998). “Disability” is defined as the process of “social exclusion of people with impairments”; people defined as disabled are (“the”) ‘experts in the process of disablement’ (Goodley, 1999, p. 26)

[3] See DSM-IV-TR. I can spare only a passing footnote to point to the curious irony that an epidemic of impairments in peoples’ ability to interface with other people should manifest at a time variously dubbed the ‘information age’, or the ‘communications revolution’. A further layer of irony is added when the communications technology of ‘new media’, becomes a key organizing platform for people marked as communicatively impaired. 

[4] Hacking is not concerned with “hegemonies”, although his analytic schema for analyzing the ‘vectors of force’ which make up the ‘ecological niches’ which make possible certain actions to be observed, defined, captured, and released as mental illnesses in given locations does not preclude such concerns. See Mad Travelers: Reflections on the Reality of Transient Mental Illnesses, Hacking, I. (1998).

[5] See chapter 5, “587 B.C.—A.D. 70: On Several Regimes of Signs”, esp. pp. 149-164.

[6] See especially the ninth lecture on “The modes of generalization of psychiatric power and the psychiatrization of childhood, pp. 201-232.

[7] See Ian Hacking (2002), especially chapter six on “Making Up People”, for a brief treatment of Foucault’s “two poles of development linked together by a whole cluster of intermediary relations” (Foucault in Hacking, 2002 112).

[8] Anthropologist Richard Roy Grinker, in his ethnographic travels abroad to South Korea, South Africa, India, Peru to speak with different parents who, like he and his wife, have been raising an autistic child, found that the information these families used to educate their selves on autism and, in the case of India, to establish treatment and service programs was obtained from Anglophone sources inhabiting the internet.

[9] Second Life is perhaps the best known of what tend to be called MMPORPGs (Massive Multi-Player Online Role Playing Games). However, Second Life prefers to bill itself less as “a” game and more as a “virtual platform” and creative tool. The heavily ironized question is begged. Is ALF “’just’ gaming”? 

[10] This project has also been serving to teach this student, trained originally as a poet, the proper processes and formatting for expository writing.