Crossing Dis/Ability Borders: Beyond the Myth of Normal
"Borderlands are physically present wherever two or more cultures edge each other, where people of different races occupy the same territory, where under, lower, middle, and upper classes touch, where the space between two individuals shrinks with intimacy....Living on borders and in margins, keeping intact one's shifting and multiple identity and integrity, is like trying to swim in a new element, an "alien" element." -G. Anzaldua
In selecting the theme for this year's Syracuse conference ("Crossing
Dis/Ability Borders: Beyond the Myth of Normal), the Institute staff drew
on the metaphor of "border crossing," which has been used by gender, class
and critical race theorists as an analogy for the experience of minorities
living in a culture dominated by White, middle-class, patriarchal norms.
We would add "able-bodied" and "neurologically-typical" to the list of
norms which dominate our culture. Through the study and use of facilitated
communication and through the broader lens of disability studies, we can
continue to learn, understand and teach the ways in which those with various
disability labels are treated as "Other" in this society and what we, as
teachers, researchers, family members and allies can do to unlearn our
own oppressive behaviors.
The development of the area of scholarship known as disability studies
in some universities is recent. This article looks at this field of study
and discusses the importance of facilitated communication to disability
studies and the importance of disability studies to the facilitated communication
community.
The Development of African-American Studies and Women's Studies
The forerunners to disability studies are race and gender studies. A significant characteristic common to these fields of study is the contention that race and gender are socially constructed. That is not to say that there are not biological differences between the sexes or that there are not darker and lighter skinned people, but that the value placed on these biological facts is culturally determined. Similarly, then, a sociological view of disability, rather than a medical perspective, is the focus of disability studies.
Another similarity between these fields and the field of disability studies is that African-American Studies departments and Women's Studies programs grew out of larger political movements--the Civil Rights and Women's movements of the 1960s. Academic institutionalization of these fields of study came with clear agendas: both sought to uncover and challenge dominant societal norms which were oppressive to African-Americans and women.
Initially, the research agenda focused on inequities in social and economic policies, laws and institutional structures fostering discrimination. While this focus has not been abandoned, a parallel aim of study also developed which sought to better understand oppressed groups with the goal of equalizing power relations (Harding, 1991).
Over time, African-American Studies departments, which were established a few years prior to Women's Studies programs, suffered from a lack of administrative support within universities. They tended to lack sufficient resources and status compared to more mainstream, better-established departments. Therefore, they became " "ghettoized" low-status programs catering only to members of minority groups." (Altbach, 1991: 13). Chicano/Hispanic Studies departments suffered similar fates. Women's Studies, which developed later, learned from this segregation and developed not as distinct academic departments, but as academic programs, which students could integrate into an already-existing program of study. The focus has typically been to include feminist perspectives in courses throughout the college curriculum, rather than be located primarily in Women's Studies courses (Hinds, Phoenix & Stacey, 1992).
More recently, similarly focused areas of study have become established within Sociology and Cultural Studies: Postcolonial Theory, which focuses analyses on the colonized and the colonizer, in countries where the history of indigenous people is one of colonization; and homosexual studies, known in Sociology as Queer Theory. Rather than seeking institutionalization as a department or a program, these theorists have tended to stay in mainstream Sociology and use their analyses to inform the sociology of oppression more generally.
Rather than become a department comprised of "The Other," the focus more recently has been to center analyses both on groups which have historically been disempowered and on those who have retained power. Thus, literature on whiteness, masculinity, heterosexual norms and the psychology of the colonizer has increased in recent years. Such a shift signals a change in the goal of minority studies, making the statement that the privilege assumed by dominant groups is a legitimate site of study, the understanding of which is important to democratizing society.
Proweller (1998) articulates this shift in regard to whiteness:
Discourse on race has broadened in the past 5 years to include examination of whiteness as a fractured and continuously shifting racial border.and exploration of how it is that whiteness accrues and hides its own power and privilege..By turning the ethnographic lens back on the cultural center, social critique of whiteness has forced what has generally been implied in the study of race to the surface as a separate social and political category of analysis..Where it enters contemporary race discourse, the construction of a white "self" strategically depends on the counterproduction of a discourse of of blackness where representations of whiteness exist in relation to an "other," usually denoted through a language of binary oppositions that assigns positive attributes to being white (1998: 96-97).The concept of the "Other" is an important one in the sociology of oppression. When a body is talked about as being different--usually in terms of race, gender, ability--there is an implicit comparison to a norm. The response to the question "Different from what?" helps us to uncover these unstated norms. The white, male, physically-able body has long been taken as the standard of comparison--the one which one is "different from." One goal of minority studies is to analyze sites within the culture which help to maintain these norms and the value attached to them.
Enter Disability Studies
The establishment of disability studies as an area of concentration comes at an important time in academe: the precedent of minority studies has a long tradition within academe, making the study of socially constructed groups an important site of study; the Disability Rights movement is well-established; the utility of infusing the curriculum with a disability perspective, as opposed to being a separate arena of study, has been recognized; and the practice of studying the power and privilege of the dominant group is well-accepted.
Rosemarie Thomson, professor of English at Howard University and a leading disability studies theorist and teacher, explains the goal of her book, Extraordinary Bodies (1997a):
My intention is to.disclos[e] how the "physically disabled" are produced by way of legal, medical, political, cultural, and literary narratives that comprise an exclusionary discourse..I want to move disability from the realm of medicine into that of political minorities, to recast it from a form of pathology to a form of ethnicity. By asserting that disability is a reading of bodily particularities in the context of social power relations, I intend to counter the accepted notions of physical disability as an absolute, inferior state and a personal misfortune. Instead, I show that disability is a representation, a cultural interpretation of physical transformation or configuration, and a comparison of bodies that structures social relations and institutions." (1997: 6).As a university professor, Thomson infuses her course on "Women and Literature" with a disability focus. She discusses her aims and strategies as they relate to the agenda of educating college students about disability:
In the broadest sense, my aim in teaching disability studies is to complicate the received "we" and "they" conception that implies both a victim/perpetrator and a normal/abnormal relationship between the disabled and the nondisabled. To do so, I probe the categories of "disabled" and "nondisabled," questioning their interpretation as mutually exclusive groups who are sorted according to bodily or mental traits. I emphasize the social aspect of disability, its relativity to a standard that is culturally determined, rather than its physical aspect..In short, this pedagogical goal requires removing disability from its traditional medical model interpretation and placing it into a minority model understanding. It means not describing disability in the language of inherent physical inferiority or medical rehabilitation but instead adopting the politicized language of minority discourse, civil rights, and equal opportunity so as to invoke such historical precedents as the Black Civil Rights Movement and the Women's Movement. In other words, by focusing on the social construction of disability, by framing disability as a cultural reading of the body that has political and social consequences, and by invoking a politics of positive identity, I hope to facilitate understanding and identification across identity groups.Such an approach is intended to relativize and politicize both the categories of "disabled" and "able-bodied" while casting a critical eye on the cultural processes that produce such distinctions. (Thomson, 1997b: 15).This broader view of disability is an important framework within which to view a phenomenon such as facilitated communication. The complexity of something like FC cannot fully be explored given current paradigms in special education, speech and communication sciences or rehabilitation programs. These areas sometimes require a critique from a different perspective, a different discipline, in order to expand their view.
In A Different Voice
A classic work in gender theory is Carol Gilligan's (1982) In A Different Voice. Gilligan challenged the work of moral development theorist, Lawrence Kohlberg, whose study "proved" that boys are at a "higher level" of moral development than girls. In Kohlberg's study, children in sixth grade were given the following dilemma to resolve:
Heinz considers whether or not to steal a drug which he cannot afford to buy in order to save the life of his wife. (Gilligan, 1982: 25)Students in Kohlberg's study were asked, "Should Heinz steal the drug?" They were then asked subsequent questions, designed to understand the "underlying structure of moral thought." (Gilligan, 1982: 26).
Jake, a sixth grader, replies that Heinz should definitely steal the drug. His rationale was based on the logic of the value of life over that of property.
Amy, on the other hand, was not as definitive in her response. In response to whether Heinz should steal the drug or not, she replied:
Well, I don't think so. I think there might be other ways besides stealing it, like if he could borrow the money or make a loan or something, but he really shouldn't steal the drug--but his wife shouldn't die either.Unlike Jake, who saw the dilemma in terms of the value of one thing over another, Amy looked at the problem in terms of relationships. Her view of the situation was based on the idea that "if somebody has something that would keep somebody alive, then it's not right not to give it to them." (Gilligan, 1982: 28). Thus, she considered the problem to arise from the druggist's refusal to help. She offered alternatives such as appealing to the druggist, showing him the "consequences of his refusal to lower his price, then he would realize that he should just give it to the wife and then have the husband pay back the money later." (Gilligan, 1982: 29). Amy said, "[I]f Heinz and the druggist had talked it out long enough, they could reach [an alternative] besides stealing" (Gilligan, 1982: 29). Barring this assistance, Amy suggests going to others who are in a position to help the husband and wife.
According to Kohlberg, moral development is purported to have stages of development through which individuals progress; six stages and three levels--from egocentric understanding based upon the effects on the individual (stages one and two) to an understanding based on societal agreement (stages three and four) to a principled understanding of equity and reciprocity (stages five and six).
Kohlberg judged Amy's response to be a mixture between stages two and three while Jake's response was seen to represent stages three and four.
Gilligan critiqued Kohlberg's inability to look for a response such as Amy's. She noted that Amy looked for alternatives, was engaged in analyzing the situation from a number of points of view and considered the consequences of various courses of action in the potential relationships between parties.
This critique of what had previously been unquestioned methodology in moral development theory put the study of girls and women on the map. The implications of Gilligan's work extended to the field of psychology more broadly as well as to research in other fields (e.g. medicine, education). Gilligan's work issued an implicit charge to researchers everywhere: be explicit in what the standard of "normal" is taken to be and in how this is determined. Data that "deviates" from this--or is different--is not necessarily of a lesser value. A male-dominated view of the world as the most valid perspective had been effectively dethroned. In addition, objectivity and replicability of the study were challenged--two fundamental assumptions of scientific research.
In A Different Body?
Like Gilligan's critique of moral development theory, facilitated communication stands as a critique to psychological theories of autism and other disability labels. IQ testing, based as it is on movement (speech being a motor activity), is inherently biased against those who do not have control over motor and/or executive brain functions. Race theorists have previously noted cultural bias in IQ testing (Oakes, 1985).
Like Gilligan, Marcus and Shevin (1997) offer an interpretation of test results that differs from the way in which leading theorists understood them. In this study, Marcus, an FC user, attempted to pass a validation test with Shevin as his facilitator. The testing protocol called for three different conditions: 1) Marcus and Shevin both shown pictures, sometimes the same pictures, sometimes different ones, with Shevin facilitating; 2) Marcus shown pictures, Shevin was not, Shevin facilitating; 3) Marcus shown pictures, Shevin was not, no facilitation. In the first condition, Marcus typed the following response after being shown a picture of a tractor:
NOT ASURE BUT IT IS A CAR THAST A FAZRMER HAS INM THE FARM SOL IT5 IS NOT A CAR (1997: 121)
After being shown a picture of five black footprints, Marcus typed:
NEATNRESS COUNTS. BEROIM.
If the testing protocol called for a "correct answer" of "black footprints," this answer would clearly not suffice. However, given an opportunity to comment on his response, Marcus typed:
YES I COULUNT TYPE DUIRTY FERET GUT I WAS THINKING THAT.
The difficulty in "word finding" reported by FC users and facilitators (Marcus and Shevin, 1997; Crossley, 1997a; 1997b) can be seen here. In the first instance, Marcus could apparently not recall the word for the vehicle a farmer uses, though his description indicates broadly what the object might be. In the second instance, Marcus saw black footprints, which made him think of "dirty feet," so he typed "Neatness Counts. Beroim [Broom.]" These examples are corroborated by the experience of others. For instance, Crossley writes of her experience as a facilitator in testing situations and notes a pattern of individuals being able to indicate not only knowledge of objects, but "sophisticated language and literacy skills that [they are] unable to show on the confrontational naming task" (1997b: 214).
In another instance in the Marcus and Shevin study, Marcus was shown a picture of a stove; Shevin was shown a picture of smoke coming out of a chimney. Marcus typed:
GO TOP HELL.I NEED A BREAK.(break) ("Ready to start again?") OK. YES (Pictures re-presented) NOTHING LIK3E MY KLKIFE. TGAKE IT AWAY.
The stove was the fifth in a series of pictures shown to Marcus. When shown picture number eight of two helicopters, Marcus did not name them, and then typed in his comments afterward:
I IKNEW THE STOVE WAS UNCOOKED YET I WANTED TO GETR IT OUT ("WHY didn't you try to name the helicopters?").I8 JKNEW I HaD A SNHOT AST THE STOVE. (1997: 122).
After being shown picture number eleven, a dentist working with a patient in a chair, Marcus typed:
BEFORTE THRE LAST ONE IT QWAS A FOOD COOKER. STOVE.
Shevin writes
[A]lthough it was at least 20 minutes after he had seen the picture of the stove, I had never seen the picture at the time he typed STOVE. This was consistent with what Eugene and I had learned many times through our informal conversations during the nearly two years we had known each other; it is not uncommon for him to take quite a long time to remember a word he has been searching for, and he will interrupt what he is currently talking about to insert the elusive word. (1997: 120).Given this interpretation, then, we come to gain a more thorough understanding of Marcus's experience of the testing environment, and possibly of the world, just as Gilligan helped us to better understand Amy's perspective. Such insights help us to uncover the unstated norm against which individuals given such a test are measured. These understandings are informative in terms of learning how to provide more appropriate supports for people, but also in terms of understanding unexamined assumptions about and expectations of people, including ourselves.
The test as described above is designed with a population of verbal, non-dyspraxic (that is: able-bodied, neurologically typical) individuals in mind. The evidence from the Marcus and Shevin study as well as others (e.g. Cardinal, Hanson, Wakeham, 1997; Olney, 1997; Biklen, Saha, Kliewer, 1997; Sheehan & Matuozzi, 1996; IDRP, 1989; McDonald, this issue) forces us to look at the presumptions inherent in testing those with disabilities. This would be a beginning toward shifting power relations between those with and without disabilities.
"Different" Voices, "Different" Bodies--Same Society?
Use of invalid testing methods is certainly one way of oppressing people. Depriving individuals of a means of expression is another. Challenging such established, entrenched, institutionalized cultural notions of dis/ability is an uphill battle. But a broader perspective such as disability studies is useful in that it provides a forum, an established, on-going critique of the ways in which "disability" is constructed in various cultural locations.
More and more, FC users and other with disabilities are speaking out,
telling their stories, challenging professional and simplistic media constructions
of what disability means (e.g., Mairs, 1996; Blackman, 1999). Like African-American
Studies and Women's Studies, facilitated communication and disability studies
challenge the power and privilege of unstated, dominant groups with a goal
of crossing the border to a more inclusive and participatory society.
REFERENCES