Tuesday, July 31, 2007
Sunday, July 29, 2007
Here's an update on the status of the summer resolutions (because, honestly, I'm tired of working on "The Dissertation" and want to stop thinking so hard--you'd think 5 pages wouldn't be hard, but you're wrong).
1. Write my prospectus for my dissertation. Turned in my first draft on July 15th and have been working on my second draft ever since. Will have second draft turned in to Dr. T by August 6th. Feeling confident that I'll defend the proposal in September.
2. Write 2 pages/day (or thereabout) drafting on my dissertation. May not become part of the final draft, but drafting out rough ideas will help me get my ideas together. Not exactly "original" material but collecting copious notes that can be copied and pasted later to resemble "text." At least, it's way more than 2 pages/day.
3. Lose 15 pounds. I've lost 8 so far. So far, so good.
4. Continue running more. I haven't been running much--just not feeling it. About 15 minutes a day.
5. Continue working out 1 hour/day, 5 days/week. I've been working out religiously on the elipitical machine for 45 minues/day and treadmill for 15 minutes/day, 5-6 days/week since January.
6. Take the boys swimming everyday (or thereabout) in July and August. Got a little tan to prove it.
7. Shoot for more "healthier," "simple" eating. (Cutting out sugar, white breads, chips. Eating more "natural," less processed foods.) Haven't drank hardly any diet soda since June 1st (maybe 1-2 Diet Dr. Peppers/week compared to 4-5 cans/day in the past). Been eating a lot of oatmeal. A lot of grilled chicken, brown rice, bran flakes.
8. Watch lots of movies/tv shows in my Blockbuster Q. I've been watching nothing but The Office, Six Feet Under, Entourage, and House since July 1st.
Also, I've read Harry Potter and the Deathly Hallows, Harry Potter and the Half-Blood Prince (again), Rhetoric of Motives (again), Language as Symbolic Action (again), Grammar of Motives (again), The Birth of the Clinic, Madness and Civilization, Claiming Disability, and about 20 other disability/rhetoric books for "The Dissertation." Oh, and I've cleaned Tobey's room, shampooed the carpets throughout the house, and mowed the grass (twice).
Now that I've patted myself on the back enough, I guess, it's back to work.
Friday, July 27, 2007
"A is not identical with his colleague, B. But insofar as their interests are joined, A is identified with B. Or he may identify himself with B even when their interests are not joined, if he assumes that they are, or is persuaded to believe so" (RM 20).
"Here are the ambiguities of substance. In being identified with B, A is 'substantially one' with a person other than himself. Yet at the same time he remains unique, an individual locus of motives. Thus he is both joined and separate, at once a distinct substance and consubstantial with another" (RM 21).
"A doctrine of consubstantiality, either explicit or implicit, may be necessary to any way of life. For substance, in the old philosophies, was an act; and a way of life is an acting-together; and in acting together, men have common sensations, concepts, images, ideas, attitudes that make them consubstantial" (RM 21).
"The Rhetoric deals with the possibilities of classification in its partisan aspects; it considers the ways in which individuals are at odds with one another, or become identified with groups more or less at odds with one another" (RM 22).
"Why 'at odds,' you may ask, when the titular term is 'identification'? Because, to being with 'identification' is, by the same token, through roundabout, to confront the implications of division. And so, in the end, men are brought to that most tragically ironic of all divisions, or conflicts, wherein millions of cooperative acts go into the preparation for one single destructive act. We refer to that ultimate disease of cooperation: war" (RM 22). [Division b/t NT and ASD, Autism Speaks and Neurodiversity Movement, HFA and LFA]
"Identification is compensatory to division" (RM 22).
"insofar as the individual is involved in conflict with other individuals or groups, the study of this same individual would fall under the head of Rhetoric" (RM 23).
"Rhetoric is concerned with the state of Babel after the Fall. Its contribution to a 'sociology of knowledge' must often carry us far into the lugubrious regions of malice and the lie" (RM 23).
"In pure identification there would be no strife. Likewise, there would be no strife in absolute separateness, since opponents can join the battle only through a mediatory ground that makes their communication possible [...]. But put identification and division ambiguously together, so that you cannot know for certain just where one ends and the other kind of begins, and you have the characteristic invitation to rhetoric" (RM 26).
"we must think of rhetoric not in terms of some one particular address, but as a general body of identification that owe their convincingness much more to trivial repetition and dull daily reinforcement that to exceptional rhetorical skill" (RM 26). [Like public discourses--film, television, internet]
"The fact that an activity is capable of reduction to intrinsic, autonomous principles does not argue that it is free from identification with other orders of motivation extrinsic to it. Such other orders are extrinsic to it, as considered from the standpoint of the specialized activity alone. But they are not extrinsic to the field of moral action as such, considered from the standpoint of human activity in general. The human agent, qua human agent, is not motivated solely by the principles of a specialized activity, however strong this specialized power, in it suggestive role as imagery, may affect his character. Any specialized activity participates in a larger unit of action" (RM 27). [Like metaphor in film reflects larger cultural fear of weakness. Stigma against intellectual deficiencies. Western idolization of independence, productivity]
"But we are clearly in the region of rhetoric when considering the identification whereby a specialized activity makes one a participant in some social or economic class. 'Belonging' in this sense is rhetorical" (RM 28).
"Science, as mere instrument (agency), might be expected to take on the nature of the scenes, acts, agents, and purposes with which it is identified. And insofar as a faulty political structure perverts human relations, we might reasonably expect to find a correspondingly perverted science" (RM 29).
"The liberal is usually disinclined to consider such possibilities because applied science is for him not a mere set of instruments and methods, whatever he may assert; it is a good and absolute, and is thus circuitously endowed with the philosophic function of God as the grounding of values" (RM 30). [Back to pervasiveness of medical discourses on public view on mental/cognitive disabilities. Science connected to God. Good and absolute. Explains Autism Speaks emphasis on biomedical treatments to and research on autism.]
"Obviously, any purely secular power, such as the applications of technology, would not be simply good, bad, or indifferent, depending upon the uses to which it was put, and upon the ethical attitudes that, as part of the context surrounding it, contributed to the meaning in the realm of motives and action" (RM 30). [Justifications for DAN protocol. chelation.]
"If the technical expert, as such, is assigned the task of perfecting new powers of chemical, bacteriological, or atomic destruction, his morality as technical expert requires only that he apply himself to his task as effectively as possible. The question of what the new force might mean, as released into a social texture emotionally and intellectually unfit to control it, or as surrendered to men whose speciality is professional killing--well, that is simply 'none of his business,' as specialist, however great may be his misgivings as father of a family, or as citizen of his nation and of the world" (RM 30).
"For the history of the Nazis has clearly shown that there are are cultural situations in which scientists, whatever may be their claims to professional austerity, will contrive somehow to identify their specialty with modes of justification, or socialization, not discernible in the sheer motions of the material operation themselves. [...] The very scientific ideals of an 'impersonal' terminology can contribute ironically to such disaster: for it is but a step from treating inanimate nature as mere 'things' to treating animals, and then enemy peoples, as mere things. But they are not mere things, they are persons--and in the systematic denial of what one knows in his heart to be the truth, there is a perverse principle that can generate much anguish" (RM 32).
A former professor of mine told me last month that the proposal was the hardest part for him. (Roxanne's told me the same thing many times.) I'll say, it's much more difficult than I thought it would be. A lot of research to do before you can even begin to know what you even want to try and say.
Thursday, July 26, 2007
Will this primarily be a dissertation about rhetoric and/or identification (in which I employ autism discourse as a vehicle for exploration)?
Or, is my dissertation about the discourse about autism (in which I argue that a rhetorical examination will yield insights)?
I see how I'm sort of doing both at the moment but here's how I got to where I am currently:
When I first started researching about autism, as a new member of this discourse community, I scoured the Internet, watched movies, tuned into to television news programs. Kept hearing people ask about autism: "He's like Rainman?" Kept coming up against these symbolic representations of autism and Tobey that didn't really fit. He wasn't gifted at anything in particular, he was very verbal for an autistic child, but he certainly wasn't the "demon" child I've seen in movies, either.
I couldn't identify my son with any of the representations that I saw in movies or in television news programs.
So, I looked around on the Internet more and found online autism communities comprised of parents, siblings, teachers, and autistic individuals. There were discourse communities wrestling with who gets to "identify" themselves as autistic, who gets to "speak" for the autistic, how to reflect the beauty of our autistic children in light of the (overwhelmingly negative) representations of autistic individuals on television and in the media. The latter being a major objective of many blogs and online postings via youtube that I've noticed. This discourse community striving to identify themselves in light of these common representations.
Identification as means of agency (consubstantiality) to illicit change in society regarding the treatment and representation of autistic individuals. Identification as means of challenging these common symbolic representations: the autistic as "savant," as "a burden," as as "demon," as a "non-human," as "white, middle-class condition." Identification as way of coping with challenges that come with raising a child with mental/cognitive disabilities. Identification as way of coping with challenges that come with living with a mental/cognitive disability.
I suppose talking about both questions? Does that make sense? Can I do that?
I'm still wrestling, I suppose, with this...
Monday, July 23, 2007
Thursday, July 19, 2007
"Disease is thus caught in a double system of observation: there is a gaze that does not distinguish it from, but re-absorbs it into, all the other social ills to be eliminated; and a gaze that isolates it, with a view to circumscribing its natural truth" (BC 43).
"disease is an individual accident that the family must respond to by ensuring that the victim has the necessary care" (BC 44). how true it seems our society believes that sentiment really is...
I'm thinking this passage relates well to the discussion on corporatization of autism: "Can medicine be a free profession that is protected by no corporate law, no prohibition of practice, no privilege of qualification? Can the medical consciousness of a nation be as spontaneous as its civic or moral consciousness? Doctors defend their corporate rights on the ground that they should be understood not in the sense of privilege but of collaboration. The medical body is to be distinguished from political bodies in that it does not seek to limit the liberty of others or to impose laws and obligations upon the citizens" (BC 46).
"Transmission from one individual to another is never the essence of an epidemic" (BC 24).
"Whether contagious or not, an epidemic has a sort of historical individuality, hence the need to employ a complex method of observation when dealing with it. Being a collective phenomenon, it requires a multiple gaze; a unique process, it must be described in terms of its special, accidental, unexpected qualities" (BC 25).
"A medicine of epidemics could exist only if supplemented by a police" (BC 26)-- i.e., an organization governing the behaviors of those "stricken" and those "in danger." "a political status for medicine and the constitution, at state level, of a medical consciousness whose constant task would be to provide information, supervision, and constraint, all of which 'relate as much to the police as to the field of medicine proper'" (BC 26).
"What defines the act of medical knowledge in its concrete form is not, therefore, the encounter between doctor and patient, nor is it the confrontation of a body of knowledge and a perception; it is the systematic intersection of two series of information, each homogeneous but alien to each other--two series that embrace an infinite set of separate events, but whose intersection reveals, in its isolable dependence, the individual fact. A sagittal figure of knowledge" (BC 30).
"the myth of a total disappearance of disease in an untroubled, dispassionate society restored to its original state of health. But we must not be misled by the manifest contradiction of the two themes: each of these oneiric figures expresses, as if in black and white, the same picture of medical experience. The two dreams are isomorphic: the first expressing in a very positive way the strict, militant, dogmatic medicalization of society, by way of a quasi-religious conversion, and the establishment of a therapeutic clergy; the second expressing the same medicalization, but in a triumphant, negative way, that is to say, the volatilization of disease in a corrected, organized, and ceaselessly supervised environment, in which medicine itself would finally disappear, together with its object and its raison d'etre" (BC 32).
This passage illustrates well the need for a Humanities-based approach to autism studies--1. Almost worship of empiricism and medicalization of disease that isn't beneficial. Doctors as deities who can do no wrong. But, empiricism doesn't exist in a vacuum. Medicine carried out by doctors who are influenced by society as much as they are influencing it. Humanities emphasis on how society is shaped by the way that we think about it--through language--needed to understand the individuals studied and to reiterate the "human" behind the science, both those studied and those studying. 2. This medicalization leads to the Positivistic approach to medicine and the body as something that should be perfected. The imperfect body that needs to be "fixed" or "cured."
"Are not doctors the priests of the body?" (BC 32).
"Is a medical experience [...] not bound up with the very structure of society? Does it not involve, because of the special attention that it pays to the individual, a generalized vigilance that by extension applies to the group as a whole? [...] [M]edicine becomes a task for the nation" (BC 19).
"The natural locus of disease is the natural locus of life--the family: gentle, spontaneous care, expressive of love and a common desire for a cure, assists nature in its struggle against the illness, and allows the illness to attain its own truth. The hospital doctor sees only distorted, altered diseases, a whole teratology of the pathological; the family doctor 'soon acquires true experience based on the natural phenomena of all species of disease" (BC 17). This passage makes the case, in a roundabout way, for a Humanities-based approach to autism/ disability studies. Too much of the discourses about autism is medicalized with the focus on the distorted and pathological.
"The chain of one disease engendering another, and that of he perpetual impoverishment of poverty, is thus broken when one gives up trying to create for the sick a differentiated, distinct space, which results, in an ambiguous but clumsy way, in both the protection and the preservation of disease" (BC 19). Foucault is establishing in this section the "birth of the clinic" as a "space" that isolates disease but not to the patient's benefit. And, while Foucault is showing how medical care was slowly isolated to specific "clinics" and argues in this chapter for a more "home-based" integrated-into-society approach to medicine and long-term care, care that isn't isolated from society in institutions creating individuals who are alienated and dependent on the state (I think), his point seems valid in regard to discussions on the treatment and institutionalization of autistics. Not sure if this point will end up being used later, but I thought it was an interesting passage all the same.
Wednesday, July 18, 2007
"The fact that a machine can be made to function like a participant in a human dialogue does not require us to treat the two kinds of behavior as identical. And in one notable respect a conditioned animal would be a better model than a computer for the reductive interpretation of man, since it suffers the pains and pleasures of hunger and satiety, along with other manifest forms of distress and gratification, though it's weak in the ways of smiling and laughing" (64). I find this quote particularly useful since autistic savants are often describes as "computers" and the behaviors of some autistics are described as "mechanistic." Problems with those kinds of metaphors.
"In Freud's sense an action is 'symbolic' when, as interpreted in terms of his particular 'terministic screen,' it reveals the presence of a neurotic motive involving ' repressions' due to the particular kind of 'Unconscious' which he postulates as a locus of motives" (64).
Burke notes a distinction between "scientistic" and "dramatistic" approaches to language (44). "A 'scientistic' approach begins with questions of naming, or definition" (44). "Or, the power of language to define and describe may be viewed as derivative; and its essential function may be treated as attitudinal or hortatory: attitudinal as with expressions of complaint, fear, gratitude, and such; hortatory as with commands or requests, or, in general, an instrument developed through its use in the social processes of cooperation and competition" (44).
"dramatistic"--"stressing language as an aspect of 'action,' that is, as 'symbolic action'" (44).
"the 'scientistic' and the 'dramatistic' (language as definition, and language as act) are by not means mutually exclusive" (44).
"Definition itself is a symbolic act" (44). dramatistic view of language as "symbolic action" (45)
"Even if any given terminology is a reflection of reality, by its very nature as a terminology it must be a selection of reality; and to this extent it must function also as a deflection of reality" (45).
"'terministic screens' direct the attention" (45)
"Not only does the nature of our terms affect the nature of our observations, in the sense that the terms direct the attention to one field rather than another. Also, many of the 'observations' are but implications of the particular terminology in terms of which the observations are made. In brief, much that we take as observations about 'reality' may be but the spinning out of possibilities implicit in our particular choice of terms" (46).
"As Jeremy Bentham aptly pointed out, all terms for mental states, sociopolitical relationships, and the like are necessarily 'fictions,' in the sense that we must express such concepts by the use of terms borrowed from the realm of the physical" (46).
"'Reality' could not exist for us, were it not for our profound and inveterate involvement in symbol systems" (48).
"even something so 'objectively there' as behavior must be observed through one or another kind of terministic screen, that directions the attention in keeping with its nature" (49).
"Basically, there are two kinds of terms: terms that put things together, and terms that take things apart" (49).
"terministic screens positing differences of degree and those based on differences of kind" (50).
"We must use terministic screens, since we can't say anything without the use of terms; whatever terms we use, they necessarily constitute a corresponding kind of screen; and any such screen necessarily directs the attention to one field rather than another" (50).
"All terminologies must implicitly or explicitly embody choices between the principle of continuity and the principle of discontinuity" (50).
"It should be apparent how either situation sets up the conditions for its particular kind of scapegoat, as a device that unifies all those who share the same enemy" (51).
"all members of our species conceive of reality somewhat roundabout, through various media of symbolism. Any such medium will be, as you prefer, either a way of 'dividing' us from the 'immediate' [...]; or it can be viewed as a paradoxical way of 'uniting' us with things on a 'higher level of awareness'" (52).
"But are we not here 'necessarily' caught in our own net? Must we concede that a screen built on this basis is just one more screen; and that it can at best be permitted to take its place along with all the others?"
"I need but point out that, whether or not we are just things in motion, we think of one another [...] as persons. And the difference between a thing and a person is that the one merely moves whereas the other acts." I think this quote is important for those with intellectual/cognitive disabilities that seem to merely move rather than act because the "symbolic" is missing from the act. Again, response to Terri Schiavo illustrates this point.
"The human animal, as we know it, emerges into personality by first mastering whatever tribal speech happens to be its particular symbolic environment" (53).
From a Grammar of Motives: "A technique of analysis of language and thought as basically modes of action rather than a means of conveying information" (54).
Tuesday, July 17, 2007
And, I think there's even a stigma and abandonment by the disability studies community in regard to the intellectually disabled. I said it. There. There is so much stigma against the physically disabled as being "inferior" and ignorant, that there is almost a shame--so little that wants to be said--about the intellectually disabled because it might reinforce or draw attention to those who represent the "reality" for some. Look at the program for the national Disability Studies conference in 2007--not ONE paper or presentation on autism. Not one. There was a entire panel at least at 4C's on autism in the classroom. But, at the national convention for disability studies--not a single one. I checked. And, in many of the books that I've read, there are chapters devoted to physical disabilities of various natures, but if there is a chapter on intellectual disabilities, it's just that a chapter.
I think disability studies are abandoning the intellectually disabled in a way. Here's why:
Linton mentions throughout her book, as do others, the necessity of the disabled to contribute to scholarship on disability. Couldn't agree more. Yes, the disabled need to have the opportunities to contribute about themselves.
But, like it or not, those without disabilities do not carry the ethos of those with disabilities to contribute scholarship on the issue. Ethos really belongs to the disabled.
However, if I (as a yet-not-disabled woman) do not contribute to this conversation, who will "speak" for Tobey? Who will "speak" for the nonverbal, intellectually disabled if not for the NT, non-disabled?
By limiting "who can speak and for whom" to just the disabled, the disability movement is ignoring a large group of people who can't speak up for themselves.
"Man is the symbol-using animal" (3). "'reality' has been built up for us through nothing but our symbol systems" (5).
"What is our 'reality' [...] but all this clutter of symbols about the past combined with whatever things we know mainly through maps, magazines, newspapers, and the like about the present?" (Burke 5). I think Burke's focus on terministic screens and the representation of reality fits well, more so than say Foucault, with my interests in media representations of autism as means of identifying autism.
"we like to forget the kind of relation that really prevails between the verbal and the nonverbal. In being a link between us and the nonverbal, words are by the same token a screen separating us from the nonverbal [...] since so much of the 'we' that is separated from the nonverbal by the verbal would not even exist were it not for the verbal" (Burke 5).
"Language referring to the realm of the nonverbal is necessarily talk about things in terms of what they are not--and in this sense we start out beset by a paradox. Such language is but a set of labels, signs for helping us find our way about" (Burke 5).
"'ideology' is imposed upon people" (Burke 6).
Humans are a "symbol-using, symbol-making, and symbol-misusing animal" (Burke 6). I'm wondering how Burke's distinction between "symbol-making" and rationalization plays into intellectual disabilities. I'm thinking of my Terri Schiavo paper and that she was considered less-than-human because she wasn't appearing to others to be using or making symbols. For autism, how much of the stigma against those with intellectual disabilities--even the struggle to accept and understand--is based on the fact that people believe that the autistic are not able to use or make symbols. Notice that Burke distinction between "man" and "animals" lies in the difference between being able to use and make symbols (man) and not (animal).
"symbolism" form of "substitution" (Burke 7). "substitution is a quite rational resource of symbolism" (Burke 7).
"cult of the scapegoat"--need to revisit this in earlier work for discussion in dissertation
Humans are the "inventor of the negative" (Burke 9).
"To look for negatives in nature would be [...] absurd" (Burke 9). "The negative is a function peculiar to symbol systems" (9). Negative is reflection of "unfulfilled expectations" (Burke 9). I underlined these passages when reading b/c I believe they fit well with discussions on disability. "Negative"--disability, "Positivism"--normal, well human with functions and abilities recognized and observable. Especially in regard to intellectual disabilities, conversations present those as "less than human," not the child that parents expected.
"the negative is but a principle, an idea, not a name for a thing" (Burke 10).
From Rhetoric of Religion--would tie in nicely with Suprahuman section: "Action involves character, which involves choice--and the form of choice attains its perfection in the distinction between Yes and No [...]. Though the concept of sheer motion is non-ethical, action implies the ethical, the human personality. Hence the obvious close connection between the ethical and negativity" (qtd in "Definition of Man" 11).
Humans: "Separated from his natural condition by instruments of his own making" (Burke 13).
"define man as the 'tool-using animal'" (Burke 13). "development of tools requires a kinds of attention not possible without symbolic means of conceptualization" (14). "Animals do not use words about words" (14).
"If we defined man first of all as the tool-using animal (or, old style, as homo faber rather than as homo sapiens), our definition would not be taking into account the 'priority' of its very own nature as a definition. Inasmuch as definition is a symbolic act, it must begin by explicitly recognizing its formal grounding in the principle of definition as an act. In choosing any definition at all, one implicitly represents man as the kind of animal that is capable of definition" (Burke 14).
"The instrumental value of language certainly accounts for much of its development, and this instrumental value of language may even have been responsible for the survival of language itself" (emphasis mine, Burke 15). I noted "instrumental" as "purposeful, pragmatic, and functional--a point relevant to autism and nonverbal autistics unable to use language pragmatically, purposefully. Or, at least some think that. I would argue that "nonverbal" is a loaded term--one that I would need to discuss in my dissertation. Because we assume that because someone is "nonverbal" that they aren't able to use symbols like NT's would. However, "nonverbal" means not speaking, but not nonsymbol using. Still, there's the assumption that thought is only able to be expressed verbally or with a formal language system. But, autistics use symbols to convey needs. This discussion on the semiotics of language is something that scholars of language and communication can contribute to the conversation. So much of autism-related discourses involve empirically-derived research; however, the Humanities can add to the discussion by examining the stigmas and associations made between symbols and those who use those symbols.
"Language is a species of action, symbolic action--and its nature is such that it can be used as a tool" (Burke 15).
Humans: "Goaded by the spirit of hierarchy" (Burke 15).
"The principle of perfection is central to the nature of language as motive. The mere desire to name something by its 'proper' name, or to speak a language in its distinctive ways is intrinsically 'perfectionist.' What is more 'perfectionist' in essence than the impulse, when one is in dire need of something, to so state this need that one in effect 'defines' the situation?" (Burke 16).
Aristotelian concept of "entelechy": "that each being aims at the perfection natural to its kind" (Burke 17).
"inasmuch as substitution is a prime resource of symbol systems, the conditions are set for catharsis by scapegoat (including the 'natural' invitation to 'project' upon the enemy any troublesome traits of our own that we would negate). And the unresolved problems of 'pride' that are intrinsic to privilege also bring the motive of hierarchy to bear here; for many kinds of guilt, resentment, and fear tend to cluster about the hierarchal psychosis, with its corresponding search for a sacrificial principle such as can become embodied in a political scapegoat" (Burke 19).
Monday, July 16, 2007
So, this week, I'm returning to the rhetorical "heavy hitters" Burke and Foucault for some rhetorical assistance.
And, what do you know, laying in the bathtub, I realized it's "consubstantiality" and "dramatism" were the terms that I was groping for last week in the dark.
Readings and bloggings for the week: A Rhetoric of Motives, Language as Symbolic Action, Madness and Civilization, and The Birth of the Clinic. I'll keep working on the proposal still, but I'm going to supplement that with readings from Burke and Foucault. I think I'll feel better when this week is over about where I'm going and what I've got.
Sunday, July 15, 2007
Note to self: need to address differences between viewing autism as "neurological," "developmental," and "psychiatric" condition. All wrought with different implications.
Back to the blogs. Some relevant ones of interest that I keep bookmarking (and I'm going to continue to add to this list). Of course, there is a list of autism related blogs available at autismhub but these are the ones that I keep finding linked from others and keep coming back to myself:
The Autism Crisis
The Joy of Autism
It's All Okay
Hoop Dee Doo and PDD
A Shade of Grey
Whose Planet is it Anyway?
Left Brain/ Right Brain
Tuesday, July 10, 2007
part of that "matrix": "formalization of compulsory education and the creation of the child guidance movement" (Nadesan 53)
Section of dissertation: identifying autism from 1960's and especially 1990's... Part of the conditions that enabled the definition of autism in early 20th century: "identification of childhood as a discrete phase of life," "emergence of pediatric medicine, child psychology and psychiatry," and "creation of new ways of thinking about childhood 'deviance'" (Nadesan 54).
Locke's view of the tabla rasa changes how children viewed in regard to infant's psyche... (Nadesan 54). "Between the seventeenth and eighteenth centuries, the belief that children were innocent and spiritually pure replaced the idea of children as bearers of original sin" (Nadesan 56).
"Rousseau's Emile (1762) articulated a stage-based developmental model of childhood, which borrowed from the empiricists an emphasis on (sensory) experience in the acquisition of knowledge" (Nadesan 56).
Until around age 12, children are believed to be "primarily pre-social in orientation and that knowledge is best acquired through their empirical involvement in the natural world" (Nadesan 57). Interesting that Beddleheim moves this age up to conception...
"Accordingly, the proper goal of childrearing in the socialization mode was to produce a mannered, rational adult through careful surveillance and deliberate intervention" (Nadesan 58).
"the expansion of state authority to include governance over (publicly funded) childhood education and the expansion of professional interest in childhood were expressions of new forms of social control that began in the seventeenth century but found full expression in the late nineteenth and early twentieth centuries. These new forms of control involved new methods of observing and governing populations that gradually transformed monarchical systems of governance into professional and bureaucratic ones" (Nadesan 60). As I was reading this section and thinking about why the increased awareness in autism flourish in the 1960's following Beddleheim's work and again in the 1990's following Aspergers publication, I'm also thinking how much LBJ's "War on Poverty" with the development of Head Start and Medicaide programs influenced the diagnosis of autism...
I'm reminded of this again when Nadesan notes (about the early 20th century)--taken from an 1897 text: "It is now conceded on all sides that, if we would make social progress and strengthen the foundations of good government, into the minds of this unfortunate class must be instilled principles of morality, thrift, industry, and self-reliance" (from Preston and Haines, Nadesan 61).
"Vast numbers of mobile, poor, and uneducated people who worked infrequently, according to the whims of industry or the whims of personal inclination, threatened state stability" (Nadesan 62).
Government programs, like those initiated in the early 20th century in America and Europe were "'philanthropic' in that they served a purpose in the longterm rehabilitation of the family and, simultaneously, facilitated state, economic, and social security" (Nadesan 62).
Throughout the 19th century, "government and professional efforts to monitor, divide, and sequester children expanded" (Nadesan 62).
the medical model that has prevailed encourages a "disease based metaphor' that enhanced 'anxiety' and the 'threat of contagion" (Nadesan 64).
"The social anxiety and threat that the feebleminded (and mad) posed stemmed from beliefs about their morally unfettered reproduction, the lack of economic self-sufficiency, and their purported susceptibility to criminal exploitation due to lack of moral judgment" (Nadesan 64, also discussed in Trent 16).
"the new emphasis [in the late 19th and early 20th centuries] on 'normal' childhood development did not preclude investigation into 'deviant' behavioral or cognitive development. In fact, quite the opposite was true. The emphasis on 'normality' functioned to delineate 'abnormality' as never before" (Nadesan 67).
"The new classes of child experts--pediatricians, child psychologists, and child psychiatrists--played an active role in the creation and dissemination of professional knowledge about normal and abnormal stages and processes of child development" (Nadesan 69).
"The role of the mother, in particular, was highlighted within the models of child development influenced by the psychodynamic framework that finally came into vogue in North American psychiatry in the early 1930's" (Nadesan 69).
"The popularization of these clinics and the creation of special schools simultaneously heightened public awareness of mental health issues in childhood and reduced the stigma associated with them. The sheer number of child experts coupled with changing understanding about and valuation of mental health resulted in an explosion of psychiatric diagnoses" (Nadesan 71).
Kanner identified autism as a "unique communication and affect based disorder" (Nadesan 71).
Asperger believed that patients did not have a developmental disorder; instead, Asperger believed that they had an "inherent affliction of personality" (Nadesan 75).
"Asperger was particularly intrigued by the unique manner of perception specific to his more intelligent patients. Although he may have stressed his patients' special skills to save them from eugenics policies, his accounts stress sincere interest in the form and expression of their 'autistic strengths'" (Nadesan 75).
"Asperger observed that the identification of autism as a distinct disorder was fundamentally linked with the study of affective and communication-based disorders" (Nadesan 77).
In the meantime, keep reading. Keep blogging.
Sunday, July 8, 2007
"Efforts to identify, categorize, and systematize differences were particular [sic] significant within the European enlightenment movement, which sough during the seventeenth and eighteenth centuries to forge clear distinctions between reason and unreason" (Nadesan 30).
"mental 'illness' was qualitatively distinguished from mental 'retardation' in the mid-nineteenth century" (Nadesan 30).
"Nineteenth-century innovations in psychiatric thought were indebted to new social and economic conditions that led to increased social surveillance and control over populations. The nineteenth century engendered new strategies for monitoring, dividing, and acting upon populations in order to foster and ensure social stability in a time of rapid urbanization and industrialization" (Nadesan 31).
"private life became subject to governmental and professional scrutiny, particularly in the extension of surveillance over populations regarded as 'deviant' and in the extension of surveillance over a person's earliest childhood years" (Nadesan 31).
"many people who are today judged as having a developmental disorder would not have been judged so before the nineteenth century and few distinctions were made between the mad and the 'feebleminded'" (Nadesan 32)
"It was not until well into the nineteenth century that 'consciousness' became a criterion used to distinguish among forms of mental illness, particularly between temporary, illness-induced delirium and pervasive insanity and that the study of psychosis was distinguished from the study of neurosis," [...] "insanity was distinguished from epilepsy, and that mental retardation was distinguished from insanity" (Nadesan 33).
Nadesan discusses the historical events that led up to the systematic efforts to identify and describe forms of psychopathology. "Enabling advances such as these were a number of historical circumstances, including the enlightenment ethos of scientific thinking and the transformation of institutions designed to house the 'insane'" (Nadesan 33). For my earlier note about the 1960's to the present, there seems to be a lack of ethos surrounding technology, medical advancements, and the government (mercury poisoning, environmental toxins, government corruption).
"madness came to be seen as the primary threat to social welfare" (Nadesan 34)--today, developmental/cognitive deficiencies/delays seem to be the threat to fear. Cultural fear of being incapacitated. Terri Schiavo as an example of this fear...
"'Governmental' power focuses both on the administration of populations and their behavioral normalization. This extension of the finality of state control to include influence over everyday affairs constitutes an important shift that [Foucault in "Governmentality" in The Foucault Effect] termed the shift from 'sovereignty' (over a territory) to 'government,' which is concerned with the disposition of things such as people, customs, habits, etc" (Nadesan 35).
"The psychiatric taxonomies [...] coupled with the transformed madhouse--the asylum--together illustrate how new forms of knowledge were concomitant with the reorganization of social space so as to divide, sequester, and administer populations" (Nadesan 35). I'm reminded here of Simi Linton's discussion on special education and the division of "normal" (nondisabled) and "special" (disabled) children in school.
"Social welfare, and the welfare of the species, demanded intensification of efforts to identify and sequester the mad and feebleminded. Thus, fearing the reproductive capacities of such 'degenerates,' the asylum took on more social import due to its ability to sequester and 'organically' mad, even while its therapeutic aspects were regarded as suspect" (Nadesan 36). I'm reminded here of my research into 19th century abortion legislation--enacted to keep the upper classes from aborting their fetuses and limiting the potential linage of moral, upstanding citizens.
"one key nineteenth-century innovation in psychopathology involved distinguishing those forms of mental illness that involved delirium and hallucinations from those that did not" (Nadesan 37).
"As interest in these disorders grew, psychiatry devised ever more strategies for distinguishing disorders characterized by 'psychosis' from more subtle abnormalities of affect, social relations, and subjective experience" (Nadesan 37).
"Bleur believed that the (schizophrenic) autistic break with reality, coupled with the other disassociations of affect and thought, ultimately leads to dissolution of personality. Personality was, in Bleur's time, understood in relation to self-awareness and subjective experience (Berrios 1996) so schizophrenia constituted a fundamental threat to the self" (Nadesan 40).
"Ernst Kretschmer, for example, distinguished between autism in which patients suppress external stimuli in order to pursue a dream existence and autism characterized by lack of emotion and affective responses to the environment" (Nadesan 40).
"autism" as a term was used often during early 20th century (Nadesan 40).
Importance of Freud to enable autism to be "psychologized" (Nadesan 42). Importance for "refrigerator mother" of 1960's: Freud's work had the "implication of bringing into focus the inner psychic life of childhood, a state whose complexities and crises demanded careful parental care guided by professional expertise" (Nadesan 42).
Mental Hygiene movement: "psychoanalytic principles and biological psychiatry in an emphasis on treatment and prevention" led to the formation of psychiatric wards (Nadesan 44).
Children missing from a history of madness and psychiatry until 19th century (Nadesan 45). 1. Children believed to no have mental illnesses. (However, "expansion of public and private schooling in the nineteenth century that children came under any systematic observation and control" (Nadesan 46). 2. Children who seemed "abnormal" or "exposed" were abandoned. (Nadesan 46)
Saturday, July 7, 2007
Nadesan's purpose in this chapter is to explore "how socially constructed standards of normalcy embedded in cultural values and practices not only shape our interpretations of autism but also contribute to the production and transformation of people labeled with the disorder" (9).
"biological diseases, particularly autism, are the clinical practices developed to 'cure' them are fundamentally cultural in origin and remediation" (Nadesan 9).
Over the next 3 pages, Nadesan describes how Leo Kanner and Hans Asperger developed their theory of autism and Asperger's syndrome. A good place for historical material for backgrounding discussion in dissertation. (pages 10-13)
"In 1981 Asperger's work was introduced to a wider audience through Lorna Wing's essay 'Asperger's syndrome: a clinical account' published in the journal, Psychological Medicine" (Nadesan 13). A good definition (to supplement or explain DSM's) is also provided...
"a simple answer to what autism is, that is, what constitutes its essence, is unattainable" (Nadesan 14).
"overly educated mother" (Nadesan 18)
"the emergence of autism as a diagnostic category in the 1940s must be understood in relation to a matrix of professional and parental practices marking the cultural and economic transition to the twentieth century just as the popularization of high-functioning forms of autism must be understood in terms of the matrix of practices that mark late-twentieth century and early-twenty-first century life" (Nadesan 19).
conditions rooted in "cultural practices and economy of their times" (Nadesan 19).
"This raises questions about the relationship between the biological and the cultural, about the relationship between disease and social representation" (Nadesan 19). A statement particularly relevant for autism... Also, have to know what "normal" is to know what "abnormal is"
"In the search for its essence, the being of autism, researchers debated whether autism is a psychological disorder of the ego attachment (e.g., Bettelheim 1967), a biological disorder of the brain or metabolism (e.g., later Kanner), a personality disorder (e.g., Asperger), or some combination. [...] The implicit but dominant model seems to be that there is a visual-spatial-topological autistic center that will ultimately be discovered. This view of autism implicitly invokes a model of medicine in which disease is ontological, a thing in itself, which can be distinguished from the afflicting patient whose ontological status is unrelated to the disabling disorder" (Nadesan 20). Bakhin's chronotope
"disease is represented in our everyday understanding as available to 'empirical' identification, interpretation, and intervention. This everyday understanding of disease is partially rooted in nineteenth-century 'positivistic' thought holding that humankind can identify and understand the laws of nature unequivocally through detached empirical inquiry" (Nadesan 20). DAN protocol
"Positivistic conceptions of medicine presume a mind-body dichotomy in which diseases are primarily if not exclusively located in the biological body and presume that each disease is caused by a specific and ultimately, identifiable element" (Nadesan 20). Need an agent of harm...
"David Armstrong's (2002) A New History of Identity takes a moderated social construction approach in tracing changing perceptions of the origin and treatment of disease. Armstrong is less concerned with the biological reality of disease than in the representational practices used to identify, diagnose, and cure it" (Nadesan 21). [ILL'ed]
Armstrong argues that "prior to the nineteenth century, disease was understood to be found in the weather, the soil, and various aspects of the physical environment" (in Armstrong 58, from Nadesan 21). "However, medicine in the late eighteenth and early nineteenth centuries began to localize disease in the form of a 'pathological lesion, a specific abnormality of structure (or later, function) situated somewhere in the corporal space'" (in Armstrong 58, from Nadesan 21). I noted in my margins after reading that this might also apply to current discussions on autism.
new regime that "demarcated the diseased body from its environment" (Nadesan 21).
"Armstong's account of changing conceptions about the nature and origin of disease [...] highlights how social beliefs, values, and institutions influence medical practice" (Nadesan 21).
"Is culture merely the clothing within which the diseased body appears? Or, does culture--through its practices of hygiene and diet and through its medical vocabularies and institutions--produce disease in its entirety?" (Nadesan 21).
Nadesan and Grinker (amongst others) have focused on the construction and identification of autism in the 18th and 19th centuries. Trent focuses on the construction of mental retardation in the mid to late 19th century in America. However, in my dissertation, I think a large scholarly "hole" that is missing is the "epidemic" of autism that seems to have occurred following Beddleheim's book until the present. An examination of the events that have led to this so-called "epidemic" that can be traced from the 1960's to the present. A quote that would support this statement:
A study of autism during the twentieth century notes that autism was "[d]erived in relation to schizophrenia," as such "autism was first thought to be organic in nature. However, psychoanalytic thought was becoming increasing popular in North America and Europe at the time that Kanner first identified and labeled autism. Thus, the ascendancy of psychoanalytic thought, soon after the formalized identification of autism as a distinct disorder, led to speculation that psychic distress brought on by 'frigid mothering' caused autistic symptoms. [...] Today, however, the pendulum has again swung in the direction of organic causes, although contemporary causal agents may be considered exogamous (e.g., mercury poisoning) as well as endogamous (e.g., genetics)" (Nadesan 22).
"to emphasize the biological component of autism can lead to a devaluation of psychologically based therapeutic interventions such as behavioral modification therapy [...] or 'play therapy' rooted in psychoanalysis. The social construction of 'ideas' about the origin and remediation of the 'autistic' patient is imbued with material consequences" (Nadesan 23).
The Social Construction of What? I. Hacking describes "interactive kinds" and "indifferent kinds"--"interactive kinds" are "affected by the process of classification to such a degree that classification may require eventual modification or replacement" (Nadesan 24). "Interactive kinds are classifactory systems that emerge within complex matrices of institutions and practices" (Nadesan 24). "effect of producing what was classified" (24)
"Psychotropic drugs increase the ability of those classified as schizophrenic to reflect actively upon their diagnoses, leading to potential transformations in their disorder through their interpretive engagement with it" (Nadesan 25). Point to note: Performative aspect of biolooping
Autism "is a particularly compelling example of the intersection of biology and culture because although it is arguably an interactive kind, it also evidences the characteristics of an indifferent kind in that its symptoms are in some way rooted in genetics or molecular chemistry" (Nadesan 25).
The remainder of Nadesan's book argues that autism is a "disorder that emerged and was created in relation to cultural practices and discourses specific to particular points in time, the transition from the nineteenth to the twentieth centuries and, more recently, the transition from the twentieth to the twenty-first centuries" (Nadesan 26).
Chapter 1: Introduction
"The medical and scientific literatures represent autism as a biological facticity that must be explained using the positivist methods and assumptions of the natural sciences" (Nadesan 2). I think this point is important because I'm thinking that part of my discussion in my dissertation will focus on representations or identifying autism as a biological condition and a psychopathic condition.
I know Dr. T has said often that she believes that depression and mental illnesses are biological in origin. And, while I'm not looking to refute that statement, the difference between autism as biological and psychological in origin is relevant for discussions of treatment and origin--namely, do parents choose to "treat" autism with medication, dietary changes, DAN protocols? Is the "autistic condition" one that occurs to an otherwise "normal" brain in response to biological factors (like mercury, for instance)? Or, do parents choose to view autism as a neurological development (or lack thereof) and choose to "treat" autism with ABA therapy, neurological acceptance, and the like? In other words, autistic children were born with brains that functioned differently, not because of any acute biological factor, but because their brains just developed differently. The distinction then between autism as biological, environmental, and developmental is crucial in contemporary rhetorics...
In Let Me Hear Your Voice: A Family's Triumph over Autism, "autism is a biologically based psychiatric condition to be therapied, remedied, assaulted in an effort to 'save' afflicted children locked inside an autistic cage" (Nadesan 2).
Nadesan: "it became increasingly clear to me that autism, or more specifically, the idea of autism is fundamentally socially constructed" (2).
"autism has a performative component" (Nadesan 2). I find this statement particular interesting, especially thinking about Aristotle's 5th canon of rhetoric: Delivery. How much of low/high-functioning distinctions is based on the performative component of autism? Especially considering criticisms against autism bloggers like this one (link from bookmark on other computer) who are criticized for blogging about autism and appearing on CNN and how their children, based on the televised report on autism, don't appear to be all that autistic, or the criticisms against Amanda Baggs, most notably by John Best Jr., because of her performances on autism that she's able to do. Especially interesting for this discussion: Baggs publicizes her autistic behaviors in vignettes (for lack of a better word) on Youtube. (link up here)
Something to consider: performative aspects of autism on Youtube by autistic individuals. Also, criticisms of ABA therapy because of emphasis on spoken delivery. Considered by notable Anti-ABA blogger, Autism Diva, (find her name) as abuse...
"Although there is a biological aspect to this condition named autism, the social factors involved in its identification, representation, interpretation, remediation, and performance are the most important factors in the determination of what it means to be autistic, for individuals, for families and for society" (Nadesan 2).
"'autism' as an epidemic has also captured the public imagination as a disorder that is regarded simultaneously as both threatening and fascinating. Therefore, exploration of the social conditions involved in the production, interpretation, and remediation of autism is important not only for people intimately involved with autism, but also for those interested in how social institutions such as medicine, psychology, and psychiatry, and even the popular media, constitute and shape our ideas about normality and difference in the context of economic and political environments" (Nadesan 3).
"Autism, I will argue, is a disorder of the early twentieth century while the high-functioning variants of autism such as Semantic Pragmatic Disorder (SPD), Pervasive Developmental Disorder (PDD), and Asperger's syndrome (AS) are fundamentally disorders of the late twentieth and early twenty-first centuries" (Nadesan 3).
Autism as a disorder could not have occurred prior to the twentieth century because "[i]t was not until standards of normality had been formalized and narrowed and standards of pediatric screening extended to a child's earliest years that children with PDD, SPD, AS (or Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD)) could be widely identified, labeled, and therapied" (Nadesan 3).
"The history of 'high-functioning' forms of autism must be further understood in the context of new standards for parenting that emerged mid-twentieth century and new economic and social conditions surrounding the purported 'information revolution' that began in the 1960's" (Nadesan 3).
"alternative explanations for interpreting the rise of autism diagnoses must be explored. In particular, environmental discourses play an important, although somewhat marginal role, in explaining and preventing disease at the end of the twentieth-century. These environmental discourses, particularly when coupled with biomedical frameworks, play a role in the political debates surrounding the causes of autism" (Nadesan 4).
"autism reflect[s] and shape[s] societal norms and expectations and opportunities for personhood" (Nadesan 5).
"the emergence, identification, and treatment of disease are always infused with cultural practices, values, and frameworks of interpretation" (Nadesan 5).
"autism can be understood historically as a 'niche' disorder whose interpretation, representation in research practices and in the popular imagination, and remediation reflect cultural preoccupations and concerns" (Nadesan 5).
"the matrix of institutions and practices that engendered the identification and exploration of autism [...] was dependent upon the emergence of a new, early-twentieth-century psychiatric model of the medical subject that centered childhood psychopathology, personality, and social relationships/interpersonal dynamics" (Nadesan 5).
Now, objectives for next couple days:
- post on Constructing Autism
- finish posts on Foucault
- post on Burke
- finish posts on Claiming Disability
- work on prospectus--1 page/day
- work on CFP for FRS
After 10 p.m., it's been my newfound love obsession with The Office--OMG is that show hilarious. I'm now in love with Jim. Next, the British version of The Office and the entire series of Six Feet Under and The Riches. Man, do I love my summer schedule. (But, I'm looking at my rigid schedule and I'm wondering if I'm not a little autistic myself?)
Wednesday, July 4, 2007
"Chapter 1: Spaces and Classes"
"Before it is removed from the density of the body, disease is given an organization, hierarchized into families, genera, and species" (BC 4).
"Disease is perceived fundamentally in a space of projection without depth, of coincidence without development. There is only one plane and one moment" (BC 6).
"The picture resemble things, but they also resemble one another. The distance that separates one disease from another can be measured only be the degree of their resemblance, w/out reference to the logico-temporal divergence of genealogy" (BC 6).
"For classificatory medicine, presence in an organ is never absolutely necessary to define a disease: this disease may travel from on point of localization to another, reach other bodily surfaces, while retaining identical in nature" (BC 10).
Relevant for my research, Garland-Thomas notes that in regard to prenatal testing for disabilities as a means of modern eugenics [an issue in autism-circles--prenatal screening for autism]:
“[W]e cannot predict or, more precisely, control in advance such equivocal human states as happiness, suffering, or success. Neither is any amount of prenatal engineering going to produce the life that any of us desire and value. Indeed, both hubris and a lack of imagination characterize the prejudicial and reductive assumption that having a disability ruins lives. A vague notion of suffering and its potential deterrence drives much of the logic of elimination that rationalizes selective abortion (Kittay 2000). Life changes and quality are simply far too contingent to justify prenatal prediction.”
Also, relevant: "disability has four aspects: first, it is a system for interpreting and disciplining bodily variations; second, it is a relationship between bodies and their environments; third, it is a set of practices that produce both the able-bodied and the disabled; fourth, it is a way of describing the inherent instability of the embodied self" (Garland-Thomson 77).
"The disability system excludes the kinds of bodily forms, functions, impairments, changes, or ambiguities that call into question our cultural fantasy of the body as a neutral, compliant instrument of some transcendent will" (Garland-Thomson 77). I wonder how much of our (collective) fixation with finding the "cause" of and "cure" for autism is related to our fear of our own diminished mental capacities? How much do we fear losing our consciousness? Our abilities to think and rationalize for ourselves? The Terri Schiavo case reflected just how much our society finds abhorrent the mentally disabled mind... And, besides that, if autism can happen to him/her, can it happen to me, too? Or, to a child of mine?
"Normal has inflected beautiful in modernity. What is imagined as excess body fat, the effects of aging, marks of ethnicity such as supposedly Jewish noses, bodily particularities thought of as blemishes or deformities, and marks of history such as scarring and impairments are now expected to be surgically erased to produce an unmarked body. This visually unobtrusive body may then pass unnoticed within the milieu of anonymity that is the hallmark of social relations beyond the personal in modernity. The purpose of aesthetic surgery, as well as the costuming of power, is not to appear unique--or to 'be yourself,' as the ads endlessly promise--but rather not to be conspicuous, not to look different. This flight from the nonconforming body translates into individual efforts to look normal, neutral, unmarked, to not look disabled, queer, ugly, fat, ethnic, or raced" (Garland-Thomson 83). While Garland-Thomson is discussing, it seems, the physically disabled body, I think her observations apply equally to the mentally disabled mind (that's redundant, I know). While seemingly praised for their individuality of mind, autistics are still seen as mentally "abnormal"--a mind needing to be "cured" or fixed. We praise the unique abilities and/or characteristics of some autistics but still seek to normalize their thinking and mental processes.
A quote for my ultrasound images paper (that I would like to submit for publication at some point after developing it more with a section on disability): "The beautiful woman of the twenty-first century is sculpted surgically from top to bottom, generically neutral, all irregularities regularized, all particularities expunged. She is thus nondisabled, deracialized, and de-enthinicized" (Garland-Thomas 83).
Why "autism"? What about "autism" as a term, a medical diagnosis, leads to the rhetoric of "cure," "intervention," and "harm"? Why do we accept someone as "mentally disabled" but argue that a "normal" person exists somewhere beneath the surface of the autistic person? Maybe because those with Fragile X, Down Syndrome, or FAS, for instance, show some physical representations of their mental retardation? After all, I haven't found any "HatingDownSyndrome" websites dedicated to eradicating those with extra chromosomes. No "Hatingthementallydisabled."
I wonder if the difference between the mentally disabled and the autistic individual is that many individuals with autism don't really "look" any different than anyone else? If an autistic adult was not gazing at the ground and was making eye contact, he or she might "look" like any other "normal" person... There are no definitive "visual" markers of an autistic individual to differentiate him/ her from the "normal" population. Perhaps, this is why it's hard to believe that there isn't a "normal" child inside the autistic one? After all, he/ she looks "normal."
Not to mention the fact that "autism" seems more acceptable than "mentally retarded." (Roy Grinker discusses this in his book Unstrange Minds.) Media representation of autistics as "geniuses," perhaps? After all, "Rain Man" could do cool "tricks"--an interesting oddity--but if someone is just "mentally disabled," what's "cool" or "interesting" about that? (God, how many times have I heard someone ask, "What talent does Tobey have?" "Is Tobey really good at math, too?" Pu-leaze. Try explaining why 2 + 2 = 4 for the 100th time.)
I suppose this discussion might fit in my chapter on the "gaze" and definition of autism...
Tuesday, July 3, 2007
Brueggemann notes: "First, there is the way that an ethics of care and ethics of justice occur in often-entangled operations with each other" (Brueggemann 68). Brueggemann describes a challenges faced by interpreters in regard to the "dimensions of, and boundaries around, their service to and representation of their d/Deaf clients" and how those concerns govern "their collective and individual views of care and justice" and how that "impacts their way of doing their job" (Brueggemann 68).
A second issue she addresses in regard to the "interpretive authority dynamics" is how "complex representation issues are encountered repeatedly by sign language interpreters," particularly when the deaf person is a "power-under situation"--as in a medical scene. Such instances are "microcosms of the way power plays out at large in our culture" (Brueggemann 69). Brueggemann argues, "The complex of representational issues that sign language interpreters encounter in their authoritative 'speaking' space need to be even more carefully coded, catalogued, and categorized so that interpreters in training and practice might have better frames within which to understand their own authority" (69).
Another issue: The "representational dilemmas that sign language interpreters often encounter, that are also often complementary and competing at the same time, are their ethical conflicts about their own positions as mere instruments or powerful advocates" (Brueggemann 70). Brueggemann discusses the ethical concerns in regard to sign language but I think her concerns likewise apply to issues related to representation and autism (parental advocacy, ABA, assisted communication): "Is an interpreter merely a kind of communicative conduit? Are they a unique form of access technology? And (or?) are they real people and an active, engaged part of the dia-no, make that tria-logue?" (Brueggemann 70).
A final point that is important for autism and representation: Interpreters "are deeply involved in the politics of translation. In exploring the always shifting standpoint of an interpretative triangle, they must turn to issues of translation, transliteration, and communicative and crosscultural (mis)understandings in general. Sign language interpreters by and large have a discomforting awareness that too much depends on upon them, that hearing people often only have conversations with them (not with the deaf person they are interpreting for), that their authority is simply too great, that the balance of communication is off-kilter to begin with and the triangle askew, near to collapsing" (Brueggemann 71).
Finally, Brueggemann concludes with a statement about "willing speech" that seems particularly relevant for autism issues, especially considering how difficult speech--communication--can be for the autistic: "What strikes me here then, and finally, is how the power of willing speech --of speech that is one's will, of speech that is easy and willing , of the ability to will speech to occur--is no authority to be ignored. [...] The authority of [...interpreters] represents perhaps one of the keenest examples we could imagine of rhetoric's long-standing educational, political, and personal power--the endowment of willing speech" (Brueggemann 71).
I'm thinking that the issues addressed in regard to sign language interpretation will prove useful for my research in two regards: One, I'm going to argue that "personhood" is linked closely with communication--i.e., the ability to speak and listen--determines our (in the collective sense) constructions of who is "a person" or "human" and who isn't. (My research into the Terri Schiavo case might prove very useful here.) This will also play into definitions of autism. And, deaf studies has a wealth of resources that will help me flesh out this discussion. I could transition from this discussion on "personhood" and communication to "who can speak for whom" and the ethics of representation (in regard to activism and advocacy--especially by parents in online communities.)
Back to reading...
Sunday, July 1, 2007
Colligan's article examines the ways in which queer theory and disability theory intersect in regard to intersexuality and disability as "cultural spectacle,"
"I contend that such an analysis should be broadened to include the role that the development of statistics played in turning disability into deviance, a process that included upholding a statistical norm against which all else was rendered abnormal" (Colligan 48).
"Moreover, the analysis should consider the manner in which the growth of the rehabilitation industry was catalyzed by a drive to remove the 'lack' and restore the disabled body to its 'assumed, prior normal state'" (Colligan 48).
The disabled are "extended the benevolent hand of charity because, particularly in the United States, their images help reaffirm the virtue and moral fitness of its nondisabled citizens" (Colligan 49). I've been thinking about this statement a bit and [just to rant] can see how enormously obvious this is. If Americans, for instance, were really concerned about the wellbeing of the disabled, why not insure that those on SSI are provided with more than the sheer, bare minimum to survive on? Why not uphold laws that prevent the discrimination of the disabled? If we really cared about the disabled as we claim to, why not have initiatives, for instance, that employ every mentally disabled American with some kind of employment? Maybe not the most productive or cost-beneficial, but it would meet the objectives of taking care of the mentally disabled. Oh well... rant over.
Why? Because "their images help reaffirm the virtue and moral fitness of its nondisabled citizens" (Colligan 49).
These statements justify autism representations because they affirm the "normalcy" of the non-autistic.
Asch, Adrienne. "Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity." 9-44
Asch applies Critical Race Theory (CRT) Disability Theory in her article. Asch's article is relevant for my dissertation because it addresses issues related to "Human Variations" (determining who is or who isn't disabled), how those "variations" influence the "worth" or profitability of the disabled individual, and how the disabled constitute "communities" and how community membership acts as a means of agency leading to social, legal change.
Asch cites Richard Delgado: "Because racism is an ingrained feature of our landscape, it looks ordinary and natural to persons in the culture... [W]hite elites will tolerate or encourage racial advances for blacks only when they also promote white self-interest" (qtd in Asch 9).
In regard to discussions of the representation of autistics as children, never adults: "Many commentators note that people with disabilities are expected to play no adult social role whatsoever; to be perceived as always, in ever social interaction, a recipient of help and never a provider of assistance; and to be more disliked by nondisabled others if they are clearly competent than if they are perceived as incompetent at a task" (Asch 11).
An interesting point made by Asch as to why minority theory doesn't necessarily "work" in regard to disability theory: "First, impairments are multiple and various; the same impairment may affect several individuals differently, depending upon other factors in their lives. The same impairment may affect the same individual differently at different times in life. [This is particularly true of autistic individuals.]
"Second, making notions of impairment equivalent to forms of human variation would reduce the need to decide who is 'in' and who is 'out' of the group of people counted as people with disabilities, which has become on of the major methods of denying people protection under the employment provisions of the Americans with Disabilities Act. ["Human variation" model discussed in a moment]
"Third, people with various conditions have a range of needs that influence their ability to take advantage of legal entitlements to education, employment, or public services. Without income to meet certain impairment-related expenses such as medications , transportation, personal assistance services, particular diet supplements, or items of clothing, for example, individuals may not flourish. Without the assistance of job coaches or other support staff, persons with emotional or cognitive impairments may not receive the individual assistance that permits them to manage the demands of typical schools or jobs. Without equipment or work schedules adjusted for rest or medical appointments, people with limited energy or with chronic pain may be unable to perform work for which they are otherwise well suited" (Asch 13).
Scotch and Schriner explain the "Human Variation" model that Asch believes ought to be applied to issues of disability: "In this...human variation model of disability, the problems faced by people with disability might be seen as the consequence of the failure of social institutions (and their physical and cultural manifestations) that can be attributed to the institutions' not having been constructed to deal with a narrower range of variation than is in fact present in any given population" (qtd in Asch 14). According to Asch, this model "has many advantages for people with a range of impairments [...] because it removes some of the pejorative specialness and exceptionality--some of the 'us and them' quality--from disability and reminds everyone that human beings come in a variety of physical, mental, and emotional make-ups that change over time" (Asch 14).
In regard to the ethics and financial interests involved in autism issues: "society will balk at making modifications tat include everyone unless dominant members of that society can be perceived to benefit as a by-product of these changes" (Asch 14).
Also in regard to the financial "worth" of the disabled according to the nondisabled and making disability issues relevant for the nondisabled: "Until it is legitimate, respectable, and acceptable to be a person with a disability in the world, until the nondisabled majority recognizes how ubiquitous impairment is and how likely it is that everyone will experience it themselves or in someone they love, and until the nondisabled majority perceives the millions of people with impairments are fully human and can contribute in meaningful ways to the economy and the family, that world will fight against every legal or moral claim made upon it to change institutions, cultural practices, and institutional and physical structures to become readily inclusive" (Asch 15).
"Instead of discussing which kinds of people have impairments or disabilities and which people do not, instead of saying that some members of society are disabled and others are not, we should consider which people cannot perform which activities in given environments and question how to modify the environments so that they are not disabling. Arguably, any person now living could, without any change in his or her physical, cognitive, sensory, and emotional make-up, be considered impaired [...] Instead of discussing impaired individuals, attention should go to determining which environments--which social, physical, bureaucratic, and communication structures--could incorporate the widest array of individuals in all their diversity of capacities and then determine which environments were impairing and how they could be modified" (Asch 17).
"impairments impinge upon people differently from one another depending upon a host of psychological and social factors that all are external to the biomedical condition" (Asch 19).
Important for discussions of who's "autistic enough": "The medical model of disability would [...contend] that people with substantial departures from a notion of 'species-typical' cognitive, orthopedic, hearing, and visual norms may be the only ones with genuine impairments" (Asch 19).
"If people labeled as mentally ill are filing complaints of discrimination in employment, it may derive from the existential anxiety occasioned by contact with someone whose behavior may be feared unpredictable, out of their or our control, or whose modes of social interaction startle those with the power to make employment decisions" (Asch 21).
In regard to her discussion on community, Asch notes, "Even for those who acquire their conditions at birth or in childhood and young adulthood, most characteristics are not genetically transmitted, and thus only a small fraction of the millions of people with disabilities grow up in a natural community of others with their same characteristics" (Asch 23).
"Lack of natural community, the variability among impairments, and the domination of medical services and philanthropic disability service organizations by nondisabled professionals have all mitigated against developing a strong, coherent, politically powerful community of people with disabilities" (Asch 23). I see online autism communities as part of creating this community to enable social change--creates agency.
Online communities are important, according to Asch, because they challenge the medical model of disability that so often presents disabled children and adults as unwanted, unhappy burdens. Communities create counter-discourses to that "[c]ontrast the views of disability as burdensome and disappointing to families expressed by many philosophers and physicians" (Asch 27). Counter-discourses are necessary considering that "most families who raise children with disabilities fare as well as others in overall life satisfaction and enjoyment of their children" (Asch 27).
Smith, Bonnie G. and Beth Hutchison, eds. Gendering Disability. New Brunswick, NJ: Rutgers UP, 2004.