Presented at ISEC 2000

Winks, Blinks, Squints and Twitches: Looking for Disability and Culture Through My Son's Left Eye

Philip M. Ferguson (College of Education, 1235 University of Oregon)

Abstract

One of the hallmarks of the disability studies movement is to explore, recover and celebrate a "culture of disability." How to interpret this phrase is by no means settled, of course. Indeed, it is precisely in the move from talking about culture and disability to talking about the culture of disability, that the tension between "same" and different" most clearly emerges. This paper argues against hasty attempts to answer the question of what it might mean to speak of a "culture of intellectual disability."

My initial focus will be on the history and status of intellectual disabilities within this larger evolution of approaches to disability. Most of my discussion will revolve around three specific policy initiatives of particular importance to research in intellectual disabilities: Normalization (aka social role valorization), inclusion, and independent living. The social values and policies commonly associated with normalization have been much more influential within the field of intellectual disabilities than any other disability. Similarly, some of the strongest proponents of educational and community inclusion come from a background in what used to be called "severe and profound" mental retardation. Finally, the example of independent living provides a very different process where a concept has been transported to the field of intellectual disabilities from its primary origins within the area of physical disability.

Finally, I will return to my attempt to evolve what I refer to as a "relational approach" to disability and culture and describe several identifiable patterns for a cultural interpretation of cognitive disability. I will compare the relevance of these patterns for other disabilities. Predictably, if not inevitably: Lessons will be drawn for the future of disability studies.

For most our modern Western history, the "official" reasons to study intellectual disability have been to learn more about how to make it disappear. As a medical condition, it has been something to prevent or cure. As an educational deficiency, it has been something to remediate or overcome. As an economic and social burden, it has most often been something to rehabilitate or at least remove from society's view. Recently, however, the emergence of the disability rights movement has challenged this predominantly clinical approach in areas as wide-ranging as personal experience, social policy, and cultural interpretation. Out of this movement, many of us are re/cognizing disability for the first time as both a complex social construction and as a significant personal identity. That is, we are simultaneously recognizing and rethinking (literally re-cognizing) the interaction of self, culture and disability in the lives of individuals. With this new approach, usually referred to as "disability studies," the reason to study disability is to make it more visible, not less; more valid as an ongoing part of the human experience; and more legitimate as a topic of study across the humanities and social sciences.

One of the hallmarks of the disability studies movement is to explore, recover and celebrate a "culture of disability." What this phrase means is by no means settled, of course. Indeed, it is precisely in the move from talking about culture and disability to talking about the culture of disability, that the tension between "same" and "different" most clearly emerges. This paper will argue against hasty attempts to resolve this tension by imposing one orientation or another upon the still emerging field of disability studies. I will look in particular at two movements at the heart of disability advocacy over the last two decades or so: independent living and inclusion. Central to this discussion is a consideration of what it might mean to speak of a "culture of mental retardation?" Other questions quickly follow: Is there such a thing? Should there be? How might it compare to cultures of deafness, blindness, physical disability? And, what forms and approaches should attempts to answer these questions take? That is, what should disability studies look like? Finally, throughout the paper, I will ground my reflections on these topics within a narrative approach to events from my son's life.

Blinking Away Definitions: Seeing Disability Through My Son's Left Eye

My son, Ian, is now 27 years old and has multiple disabilities. Over the years he has collected a variety of labels that supposedly specify what those disabilities are: severe mental retardation, spastic quadriplegia, developmental disabilities. Predictably, the educational and adult service systems involved in his life have given labels only to his perceived limitations; there have been no clinical diagnoses for his mixture of odd talents and personal quirks that are the main images I have of him now. What is the technical term for an aficionado of sound effects tapes? Which professional would assess his ability to identify TV sitcoms by the first four or five notes of their theme songs? When does he get graded for the terrific laugh he shows along with a warped sense of humor? My point is simply that my son's individuality can be easily swallowed up by the scary stereotypes and diagnostic categories that lie behind the official labels. After 26 years, most of what matters to me about Ian is not touched by terms like mental retardation and cerebral palsy. Certainly, the physiological realities giving rise to those terms are there to be reckoned with. Many things that most 26 year olds find easy to do are impossible for Ian without intensive supports. After all these years observing his progress and frustration in dealing with those limits, however, the question that really bothers me is one that may at first seem superficial: How am I to describe what Ian is doing when he "winks"?

The story goes like this. Several years ago, someone taught Ian to squeeze together the eyelids of his left eye in a rough approximation of an acceptable wink. If you ask him to wink, he will do this behavior. If he sees someone else "wink," he might imitate that action even without being asked. And on rare occasions he might actually produce his winking behavior spontaneously. He almost always laughs or smiles when he does this, and it usually evokes smiles and laughter by those around him as well.

So a brief summary of the situation might note that Ian can close his eyelids together on one eye: he knows the mechanics of winking. He also does it when asked to "wink." That is, he apparently associates the word "wink" with the same physical action (roughly speaking, he is not very coordinated about it) that the rest of us do. He even apparently understands at some level that something about the physical action is humorous, because he usually laughs when he does it. But the question remains: Is Ian really winking? It seems more volitional than an uncontrolled twitch would be. But is he really doing some learned squint or blink? Perhaps his actions could be described as imitating a wink, but without any intentionality behind the physical behavior similar to that which motivates others to wink (indicating that one is joking, acknowledging some sort of conspiratorial understanding with another person, flirting, etc.). Or, does Ian's disability overwhelm any cultural context to such an extent that a thin behavioral description of eyelids closing is all that remains available for careful observers?

These are not new questions, of course. Although he never mentions disability, Clifford Geertz' famous essay on "thick description" (Geertz, 1973b), relies upon the complexity of winking (admittedly borrowing from Gilbert Ryle's original discussion) to illustrate how even the simplest physical behavior can become quickly embedded in layers of cultural interpretation as we thicken the context surrounding that behavior (from twitching, to winking, to imitating a wink, to practicing imitating a wink, etc.). This connection with Geertz and the concept of thick description is purposeful. Geertz is not so much interested in winks as he is in how to interpret them as symbols full of cultural meaning. His discussion has relevance to disability studies as well. As a way to explore the interactions of self and culture within the context of disability studies, an elaboration of "thick description" encourages us to collect and interpret the narratives within which the cultural meanings of disability are always initially embodied.

What might go into a thick description of whether and how someone like my son could be understood to be actually winking? The larger questions that emerge from this involve the changed interactions of personal perspective and cultural context -- all of the dimensions that help make a description thick instead of thin -- when the participant's very capacity for intentional behavior is somehow questioned, or at least inaccessible. So, from Ian's winks, I am led to two basic questions. First, what is it that Ian is doing when he closes his eyelids, and how is it similar or different to what others do? Second, what is it that I am doing when I try to understand what Ian is doing, and how is that similar or different to what has been done in the past? I take the first question to involve, at least partly, an attempt to define cognitive disability. And I take the second to involve, at least partly, an attempt to define disability studies. Obviously, with both questions, then, I am emulating Geertz' use of the mundane behavior of winking to open up a much broader and more abstract consideration of disability and culture.

Asking for definitions -- of disability or disability studies -- can often mislead us. As often as not, the questions send us off into an epistemological wilderness, hunting for some conceptual trophy that we can mount on the wall at home for all to study and admire. A definition seems to imply an essence -- some common meaning that in turn refers to a discrete piece of shared reality possessed by all those objects to which the term correctly applies. However, a search for definitions need not involve such a commitment to essentialism. The philosopher Wittgenstein reportedly advised his students to avoid this trap by framing the question differently: "Don't ask for the meaning, ask for the use" (cited in Wisdom, 1965, p. 87). In other words: Give up the quest for some smooth but slippery essence that strips away particularities of context in the push for linguistic common ground. Instead, Wittgenstein advises, get back to the rough ground of practice and recognize how people actually interpret their lives in language. Don't define literature for me, tell me some stories. If I notice some family resemblances among the examples, then so much the better.

So, what I hope to do in response to my two questions is not so much to define disability in general or cognitive disability in particular. Much less do I desire to pin down some prescriptive rules for how to do disability studies "correctly." My goal is simpler: to tell some stories, look for relationships, and find enough traction for moving forward our culture's interpretations of cognitive disability.

Squinting at Methods: Telling Stories and Looking for Authors

As I have indicated, much of the following discussion of the interaction of culture and cognitive disability revolves around the experiences of one specific individual whom I happen to know well: my son, Ian. I have certainly written about my son before (Ferguson & Asch, 1989; Ferguson & Ferguson, 1993; Ferguson & Ferguson, 1996). What is new here is that I am more explicitly treating my analysis of these family events not only as personal narrative, but also as an academically legitimate example of at least one way to do disability studies. Feminists have taught us to recognize that "the personal is political," but it is equally true that the personal is cultural. If understanding culture is a familiar feature of disability studies, then the personal inevitably becomes legitimate data for analysis. I see this personal story as absolutely integral to my professional research agenda

Personal Narrative and Dilemmas of Authorship

The narrative content of this paper falls at the crossroads of two growing trends within the expanding territory of interpretivist (or qualitative) research: autobiographical reflection and narrative analysis. Within sociology, Carolyn Ellis is perhaps the most familiar champion of the ethnographic interpretation of the "lived experience" in her accounts of the deaths of her brother in plane crash (Ellis, 1993) and her partner from emphysema (Ellis, 1995). However, there is a long and honored history of interpretivist researchers incorporating events from their personal lives not for confessional purposes so much as sociological ones (Ellis & Flaherty, 1992; Richardson, 1992). Some of the best of these are relegated to the ethnographic margins in prefaces or appendices that allow the personal voice of the author to emerge more openly (e.g., Lareau, 1989 ; Liebow, 1993; Lightfoot, 1983; Whyte, 1955). However, one has only to think again of Clifford Geertz to find such examples of personal experience embedded in the analysis itself. His classic account (Geertz, 1973a) of direct involvement in a Balinese cock fight develops a notion of "deep play," and illustrates how such uses of the personal have often occupied a central place in the development of interpretivist research (see also the recent collection of essays by Harry Wolcott, 1994).

The other brand of research that I think applies to what I try to do here is narrative analysis. Narrative research is also receiving a rapidly increasing amount of attention and popularity. Telling stories has become one of the favorite metaphors for what this type of qualitative research does. As with the use of personal experience, narrative analysis is also not really new, with clear roots in the ethnographic method of life history . What is perhaps new to some of us in disability studies (although present in hermeneutic philosophy at least since Dilthey) is a postmodern sensibility that such narratives inevitably reflect the researcher as much as the respondent. The point of much narrative analysis is not only to collect and share people's stories of their own lives, but to maintain a narrative style and approach to the telling/retelling that inserts the researcher as part of the tale (Bruner, 1988; Polkinghorne, 1988; Ricouer, 1981). In telling Ian's story (and mine), I recognize that I am not simply finding this story, or simply deciding to tell it within a research context. My decisions to use the events that have happened with, and to, my son -- even my choices of how to frame those events -- are obviously my constructions. I agree with Elliot Mishler's recent summary (1995) of the challenge and responsibility to the would-be narrative researcher:

It is clear that we do not find stories; we make stories. We retell our respondents' accounts through our analytic redescriptions. We, too, are storytellers and through our concepts and methods -- our research strategies, data samples, transcription procedures, specifications of narrative units and structures, and interpretive perspectives -- we construct the story and its meaning. In this sense the story is always co-authored, either directly in the process of an interviewer eliciting an account or indirectly through our re-presenting and thus transforming others' texts and discourses. (pp.117-118)

Dangers of Collaboration and Self-Indulgence

Equally important, I also see this paper as illustrating both the advantages and difficulties of trying to use truly participatory or collaborative research methods with people with disabilities, including those with significant cognitive disabilities. A key to anyone's sense of self is having one's own voice. A central theme to most of the events I describe here is the effort to give Ian a more effective voice in defining his own identity, while still maintaining the relevance of his parents' participation in his life. Yet, I have struggled to find ways to be faithful to that goal in this more literate context of a written description of that very effort. In a manner much more profound than simple names beneath a title, Ian is an author of this paper. In the more conventional sense, however, he has not written a single word. This is not just my problem, of course. Many researchers in the field of developmental disabilities are rightfully embracing the participatory spirit reflected in the clarion call of the international disability rights movement: "Nothing about us without us!" The difficulty remains of how to achieve this collaborative goal in the traditional forms of academic presentations so comfortable for those of us who use words for a living, but so often inaccessible to those with significant cognitive disabilities. Certainly, we need to work as academics to establish new venues for sharing information beyond the journal article and conference paper that are more available to all. Inevitably, though, it seems that the verbal (both oral and written) report will remain a central part of our research. The challenge remains to build ramps to our research, as it were, that allow all to enter. My efforts to recognize Ian's contribution and access to this paper remain superficial and inadequate. I hope that at least recognizing the problem flattens out a few steps.

Finally, a major risk of this approach is yielding to excesses of self-indulgence and unedifying emotionality. It sometimes seems in these personalized accounts as though the experience itself is somehow supposed to confer scholarly worth upon the author's interpretation of that experience. The risk is matched, however, by a potential benefit, for increased appreciation of the sources of information that reside neither in the researcher nor the researched, but only in the quality of the relationship between them. The methodological hope for such mergers of autobiography and ethnographic technique is to clarify "the ways in which our knowledge is grounded in our practical, personal, and participatory experience in the field as much as our detached observations" (Jackson, 1989, p. 3). Of course, the methodological aspirations are inseparable from the substantive purposes for treating these personal events as "data." If this paper does not have relevance to our efforts to understand more about the interactions of self, culture, and cognitive disabilities, then not only is it not the paper I intended to write, it is not the paper you should expect to read.

From Twitch to Wink: Finding Self in Culture

You can't wink (or burlesque one) without knowing what counts as winking, or how, physically, to contract your eyelids But to draw from such conclusions that knowing how to wink is winking . . . is to betray as deep a confusion as, taking thin descriptions for thick, to identify winking with eyelid contractions. (Geertz, 1973b, p. 12)

One way to rethink ("re/cognize") mental retardation or cognitive disability is to describe how the complex array of possible meanings for a person's behaviors seem drastically curtailed. The social construction of the meaning of language and behavior initially leads to a potentially infinite variety of interpretive possibilities. (Objectivist critics of such constructivist approaches to meaning argue that this relativism cannot be escaped, leaving us with interpretive anarchy where there are no rules to prefer one meaning as more valid than any other.) We move from the babble of possible meanings to the precision of communication through a complex interplay of cultural location, historical period, subgroup conventions, specific elements of immediate context, and personal intention. I am arguing that one useful way to approach cognitive disability is to see it as a pre-emptive constriction of this communicative process.

To a certain extent, Ian's eyelid movement is just an eyelid movement because it is taken out of this interpretive interplay. It is not suspended in the same "webs of social significance" (Geertz, 1973b, p. 5) that the rest of us spin for ourselves. At its most profound, cognitive disability seems to remove the element of personal agency or psychological intent that pushes the behavior from twitch to wink. It is difficult, for example, to think of Ian as a sexist when he winks, objectifying women as sexual objects by knowledgeably participating in a traditional behavior of men. It is equally hard for me to inpute an ironic or deceptive sensibility to Ian's behavior. (In the same way, it is hard for me to envision someone thinking of Ian as a racist, or a capitalist, or any number of other categories typically available to those interpreting the behavior of adult white males in our society. To the extent that I believe some personal understanding of the cultural norms and traditions is important to such interpretations of specific behavior, then those meanings seem less available to Ian than to others.

The crisis of representation spoken of so frequently these days in postmodern discussions of social science and the humanities seems superseded here by an earlier crisis of presentation. The "crisis" arises not from my inability to provide direct access to Ian's understanding of his world but rather from an uncertainty that a fully furnished world is there to be accessed. If we may accurately portray the social sciences at the heart of disability studies as the interpretation of other peoples' interpretations (the so-called "double hermeneutic"), then how does one interpret the absence of interpretation?

Telling Stories: Describing Cultural Context

The answer for me comes dressed in the metaphors of the humanities rather than the sciences: I try to "read" Ian's story within a symbolic "discourse" that changes behaviors into actions. It is important to recognize what makes cognitive disability so different in what is still the dominant approach to disability. It is not so much that we do not see a "person" or "a real human being" when we encounter someone with so-called profound mental retardation. It is rather that we do not see any culture. We see no meaning to the behavior: there are words but no discourse; events but no story. In a way, the challenge for interpretation is that all we see is an individual: Rousseau's noble savage, a single person in a cultural void, as close to a decontextualized existence as possible. The physiology seems to overwhelm the social. We see no religion, we see no politics, no racial awareness or class identity, no moral stance, no economy. We have trouble admitting any intentional awareness of these cultural components that the rest of us use to define each other. What potentially impedes my interpretation of Ian's "winking," then, is not an absence of self but an absence of culture. Without such a cultural context, people with significant cognitive disabilities are neither the same as, nor different from, the nondisabled population. There is no comparative context within which to make the judgment.

However, the instant I begin to try and interpret Ian's behavior -- the minute it becomes worthy of notice -- then culture flows in. By representing my son's life to others I invest it with a narrative, I inscribe his actions with a temporal sequence that starts to transform his eye twitches into winks. When I told the story earlier of how he came to learn to close his eyelids when asked to wink, I was contributing to an enculturation of Ian's life through narrative. In short, Ian can not wink unless someone wonders aloud if he can. It makes culture relevant to his life, and starts the search for further interpretive symbols. That may not be sufficient, but it seems a necessary interpretive leap for questions of similarity and difference to have meaning to the lives of people with cognitive disabilities. The poet may be right that the world will end not with a bang but a whimper; I argue only that it begins with a wink. I wink, therefore I am.

A brief aside may be appropriate here. This analysis seems to me to show a path to conceptual co-existence between hard headed interpretivists and soft-nosed behaviorists. The evolution among enlightened educators from shaping discrete skills to embedding activities in functional settings is at least a partial recognition of the importance of cultural context. At the same time, interpretivists must avoid the impression that successful enculturation of people with significant cognitive disabilities is purely an interpretive exercise in collective pretending. If Ian did not learn some approximation of closing his eyelids, then no amount of "as if" stories would create a persuasive wink. Talking of the necessity of cultural status should translate behavior into meaningful activity, not invent behavior that no one else can see. One of the few ethnographic researchers to focus attention on people with so-called profound mental retardation, David Goode (1980; 1995) has used the metaphor of "behavioral sculpting" to describe this necessary combination of "raw material" and interpretive insight in the ability of friends and family to recognize purposeful actions where others see mere random sound or movement.

Reading Stories: Explaining Cultural Context

Once human behavior is seen as . . . symbolic action . . .the question as to whether culture is patterned conduct or a frame of mind, or even the two somehow mixed together, loses sense. The thing to ask about a burlesqued wink or a mock sheep raid is not what their ontological status is. It is the same as that of rocks on the one hand and dreams on the other -- they are things of this world. The thing to ask is what their import is: what it is . . .that, in their occurrence and through their agency, is getting said. (Geertz, 1973b, p. 10)

What gets said, of course, depends on who is listening and in what cultural context. It is not enough to tell stories about people with cognitive disabilities. We must also learn how to explain them. Asking if Ian can wink, and what that might mean, begins the story, identifies his behavior as part of a social discourse. The cultural hermeneutics behind Geertz' treatment of thick description allows me to interpret the "said" of Ian's behavior not merely what he did or did not mean to say. Ian's wink becomes a social text with meanings.

For people with significant cognitive disabilities, this social dimension is crucial. Ian's ability to wink is not only temporal, it is situational. Ian has to be around people who believe he can wink -- in some sense of that term that is meaningful to them. Sartre was wrong. His famous quotation that "hell is other people," conveyed the crushing sense of finitude that simply recognizing the presence of other active humans created for cranky existentialists. I always interpreted his remark to refer more to spatial limitations than to hints of mortality. That simple awareness of the existence of other conscious actors defeated my comforting conceit of solipsistic control of the world and its interpretation. Every time we sit through a frustrating committee meeting with people who refuse to recognize the superiority of our ideas, we get a superficial sense of what lies behind Sartre's epigram. For Ian, though, Sartre seems profoundly wrong. Other people are Ian's salvation; they are essential to the daily elaboration of who he is. Even more than for most of us, other people are a crucial part of who Ian is. Disability is the not the absence of self , it is the absence of other people.

There are two explanatory components to this social expansion of Ian's narrative. First, there is the importance of Ian's community membership, surrounded by supportive friends and family who join him in a choral presentation (as it were) of his personal story. Ian's story must be told by groups with multiple voices. The historical isolation and segregation of people with mental retardation from precisely this kind of community affiliation are part of what has deprived them of a cultural voice. Stories of Ian's presence in the community, his enculturation if you will, thicken the explanation of how he acts in the world. Using the interpretive metaphors of social text allows me to have Ian's friends tell their stories as well. Ian's story must be explained by those around him.

The second dimension of explanation has to do with a type of conceptual thickness. Not only must Ian have other people to help tell his stories. He must also have his story placed in a critical, socio-historical context. The thick explanation of why Ian can or can not wink would have to attend to the opportunities for people with cognitive disabilities to be perceived as winking by other members of the culture. Interpreting Ian's winking as part of a larger, macro-level commentary on the emerging social challenge to the medical model of mental retardation, reflexively invests his action with greater explanatory richness than he could ever imagine (Watson-Gegeo, 1991). That Ian does not bring an especially acute political consciousness to his action does not prohibit such application: "[W]here an interpretation comes from does not determine where it can be impelled to go. Small facts speak to large issues, winks to epistemology, or sheep raids to revolution, because they are made to" (Geertz, 1973b, p. 23).

This socio-historical context for explanations of Ian's life also locates some important differences between cognitive and other types of disabilities. Trying to supply a cultural context for critical explanations of Ian's place in society soon confronts the issue that there is no alternative or subculture available to replace or resist the absent culture of dominant society. In this regard, at least, severe cognitive disability differs from a disability such as deafness. Whether or not Deaf people choose to (or are allowed to) locate themselves within such a community, there exists an impressive and distinct tradition of language, heritage, and shared values that is demonstrably different from the mainstream culture. There is a potential self-awareness of "me as a DEAF person" that such individuals may develop and present to the world. Simultaneously, that reflexive interpretation of an alternative culture by members of the Deaf community themselves provides a thick explanatory context for others to study and interpret as well.

What I am suggesting is that there may be little use in trying to speak of a "mental retardation culture" in the same way that it makes perfect sense to speak of a "Deaf culture," or a "Blind culture," or a "Physical Disability culture." There is probably something that might be called a "professional" or "bureaucratic" subculture, which often engulfs people with mental retardation. One can find evidence of such patterns of life in many of residential programs operated for people labelled "developmentally disabled. It is a life of rules and programs, and procedural rigidity that turns a home where disabled people live into a facility where support staff work. There is perhaps even something of a "family/advocate" subculture. A kind of "support group" identification can emerge among family members for example that becomes a haven of familiarity for parents and others who grow tired of explaining, defending, and advocating to a seemingly indifferent outside world. However, I would argue that these examples are more about people who surround those with significant cognitive disabilities than a culture arising from the mentally retarded population itself. At most, people with cognitive disabilities have been offered the options of fragile assimilation into, or paternalistic parodies of, the dominant culture. This is a complicated issue, and one that has not received the scholarly attention it deserves. There are important differences in cultural experience relating to how severely intellectually disabled someone is. I do not pretend to deal adequately with the topic here. However, the logic of my argument here clearly suggests that distinct mental retardation subculture should not a persuasive possibiltiy. If mental retardation is appropriately understood as the absence (or the progressive diminution) or culture, then the viability of an alternative culture uniquely identifiable with mental retardation (rather than the bureaucracy surrounding it) seems to be an unavoidable corollary.

This contrast in explanatory contexts could itself help explain the relative isolation (with important and increasing exceptions) of critical scholarship and advocacy within the disability studies movement generally from similar and contemporaneous developments within the field of interpretivist scholarship in cognitive disabilities. The historical choices for interactions with culture have been different for people with different types of disabilities. For most the choices have involved movement between alternative and mainstream cultures. For people with cognitive disabilities the choices have involved movement from no culture to some culture. The common experiences of oppression, discrimination, and stigmatization that cut across these disability categories still do not totally displace these different initial starting points for defining a cultural position. (Surely this is similar to the different traditions of people of color with the dominant culture in America. The different historical contexts of African Americans and Asian Americans does not undermine their shared experiences of stereotypes and racism, but it does complicate their own interactions and cultural positions. Disability is certainly no more cohesive a term than ethnicity in this regard. We should not ignore or diminish the intersectional complexities that exist within the disability community, any more than generalities about ethnic minorities should replace recognition of racial particularities in culture and tradition.)

Winking at Adulthood: A Relational Approach to Cognitive Disability

Let me pursue these cross-disability comparisons by shifting my focus to stories about something more obviously fundamental to my son's life than winks and twitches. Specifically, I want to use Ian's transition to adulthood over the past decade to examine the cultural implications embedded within two of the more influential policy reforms of that same period: the Independent Living Movement (ILM) and the Community Inclusion Movement (CIM). These two movements are interesting case studies in the different cultural histories of cognitive and physical disability. They seem to me to provide helpful examples of the conceptual tension between core concepts of sameness and difference that run throughout the evolving relationship of disability and culture. Briefly, to forecast my argument, I find assumptions of both essential sameness and essential difference implicit in the discourse surrounding both the ILM and the CIM, although they emerge within separate dimensions of adulthood. The unintended consequence of this persistent essentialism is to risk the continued ghettoization of people with the most significant cognitive disabilities to margins of both the disability community and mainstream culture. This comparison suggests to me the potential strength of a relational approach to disability and culture that chips away at the frozen distinctions of essentialism without dissolving our legitimate differences in some sort of mythical melting pot.

As before, however, I want to ground my discussion in a narrative slice of my son's life. In many ways, Ian's experiences over the last two decades or so exemplify a generation of dramatic changes in social policy and professional practice in dealing with people with his level of cognitive disabilities. When he was 5 years old, he was legally excluded from the public schools in the state where we lived. One year later, (and more than 20 years after the Brown desegregation decision, The Education of All Handicapped Children Act (now IDEA) guaranteed for the first time his basic right to a "free, appropriate public education." During his school years, he benefited from professional advances in how to combine a focus on functional skills with an emphasis on keeping him in the most integrated educational settings possible. Finally, just as he got ready to leave school, there was a renewed professional attention to effective planning and coordination to make that transition to adulthood as smooth as possible (Rusch, Szymanski, & Chadsey-Rusch, 1992).

These changed perspectives followed Ian (and others of his generation) as he left school and tried to make his way as an adult. Over the last few years, there has been a dramatic change in how many families and professionals have approached the challenge of designing effective services to help people with disabilities similar to our son's lead an adult life embedded in the community as fully as possible. Through a type of vocational policy called "supported employment," Ian has been able to avoid the segregation of sheltered workshops. An analogous policy in the residential domain -- "supported living" -- may offer Ian a greater variety of living arrangements to choose from than traditional group homes or other forms of congregate care.

The Day the Canary Died: The Fragile Status of Adulthood

However, translating these reforms into concrete and durable improvements continues to be a frustrating challenge. As I write these words, Ian and I are trying to recover from a disastrous week in which 3 years of planning and work by my wife and me seemed dangerously close to collapse. The pieces had finally seemed in place for Ian to move into a home of his own, making all of the transition plans, policy waivers, redesigned support strategies, and searches for flexible support dollars all seem worthwhile. In a few days, the outlook seemed dramatically changed. A selective chronology from one day of the week:

We survived the week (well, except for Lucy), and prospects look better now. However, the sequence of events and my own growing sense of futility and frustration during that week, reinforced an awareness that the longer all of those disruptions and delays persisted, the more fragile Ian's adulthood seemed. Whether the issue is winking or adulthood, the main feature of Ian's disability right now is how contingent his cultural status seems on events that are largely out of his (or my) control.

I want to be clear about the issues I am raising here. First, it is the cultural status of adulthood that seems fragile, not whether Ian is an adult or not. Being an adult and securing the symbolic status of adulthood within the dominant culture are two very different achievements. In many ways, it is precisely in the gap between the two where cognitive disability resides. The second cautionary note flows from the first: the causal direction is important. It is not, in my observation, the type and severity of Ian's multiple disabilities that have cumulatively caused his adulthood to be so at risk. Just the reverse: it is the multiple social barriers placed in the way of his adulthood -- the breakdown of the narrative rather than any physiological impairments -- that construct and define the nature and severity of his disability.

Most frustrating of all, perhaps, is that Ian's difficulties with concepts and language mean that he is largely unable to challenge these threats to his adulthood in his own words. All of us, disabled or not, have had days similar to the one I described above. Certainly, everyone with a disability can recite their own horror stories of dealing with a bureaucracy that seems intent on perpetuating their dependence and poverty. What is different in Ian's experience (and others with significant cognitive disabilities) is in how he responds to such barriers. Ian does not necessarily recognize the challenges to his adulthood as readily as those of us around him do. Even if he does in some way recognize a challenge, his opportunity to respond effectively can be limited by both his communication and social skills. In other words part of the issue surrounding his adulthood is how it continues to require my (or some other advocate's) ongoing translation of his complaints and desires.

Finally, I do not want to deny or neglect the very real gains that my son, and many others with similar disabilities, have derived from policy reforms directly attributable to either the ILM, the CIM or both. His life is embedded in a circle of friends who help tell the stories of his adulthood to a larger society that often remains uncomfortable with his presence. Clearly Ian's battles to maintain a job and move into a home of his own are very tangible signs of a generation of disability advocacy to create a recognized place within those personal and cultural dimensions where the status of adulthood seems to dwell. And in winning some of these battles, however fragile and few the victories seem, Ian and many of his peers have better life today than we dared envision 25 years ago. However, despite these gains, I want to argue that this cultural terrain will remain contested by the dominant society until the essentialist assumptions of both movements are now recognized and reframed.

Independent Living and the Personal Dimension of Adulthood

Personal autonomy is the meaning or dimension of adulthood that has probably received the most attention from the fields of special education and adult services. Having control over where I live and with whom, where I work and for whom, these are perhaps the most common markers in our personal lives of our independent living. It is this personal connotation of adulthood that educators and human service professionals usually mean to convey when they speak of the "transition from school to adult life." Over the past decade, the expansion of formal planning for this transition has most often focused on those domains of life most clearly associated with personal independence in our society (Rusch, DeStefano, Chadsey-Rusch, Phelps, & Szymanski, 1992).

From its outset, the strength of the Independent Living Movement has also been to concentrate on the personal dimension of adulthood. Perhaps the central contribution of the ILM has been to relocate the sources of economic dependency and social isolation from personal deficits inherent to the disability to cultural and environmental barriers constructed by society. The movement stressed the values of self-determination and autonomy as well within reach of people with disabilities if only the full range of creative adaptations and accommodations were made available. The key value seemed to be personal control: over where one lived, what one did for a living, how one got around from place to place.

As several commentators have noted, the structure of the Independent Living Movement was to argue that people with disabilities could succeed in the dominant society if allowed to use alternative means to achieve the same ends. The social critique presented by the movement was with the barriers to these hallmarks of Western individualism -- autonomy and self-sufficiency -- not with goals themselves. In the words of one of the earliest interpreters of the movement:

While disabled persons have been excluded from full participation in the American economic-political system, they still subscribe to the system's most cherished values and assumptions. They still want to become a part of the system. (De Jong, cited in Williams, 1985, p. 1004)

Adulthood, the argument goes, is essentially the same for disabled people as everyone else. It is the environmental accommodations that need to be different. As a result, the rules of this predominantly economic game went unchallenged; disabled people were simply demanding a place at the starting line.

politically moderate agenda that is behind the relative success of the movement, at least in terms of official policy and rhetoric (Williams, 1985). Certainly, it could be argued that the attitudes and programs flowing from the "Independent Living Movement" have helped produce a major shift in how our culture thinks of adults with disabilities. The epitome (at least rhetorically) of that shift may be contained in the language of the Americans with Disabilities Act: "[T]he Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals" (Section 2.a.8).

There is a danger in this success that flows from the very core of the ILM. If the argument is that disabled people are essentially the same as everyone else, then once the barriers to full adulthood are removed, any remaining differences are reified into equally essential "facts of life." Since the ILM does not seriously challenge the social rules of rugged individualism, then if there is a remnant that continues to fail even when access is expanded, its exclusion from culture is more justified than ever (Ferguson, 1994; Ferguson & Ferguson, 1986). If Ian has to continue to earn his way into adulthood by the measures of personal productivity and self-determination, then his social participation will always remain persistently fragile at best or overtly denied at worst. For people with the most significant cognitive disabilities the ILM has created a logic that could legitimize their marginalization as the exceptions that prove the rule of essential sameness for other disabled people. Once more, it is the essentialist assumptions of an either-or ontology that reinforces the supposedly inherent "otherness" of some by claiming the inherent familiarity of most.

Deconstructing the discourse surrounding the ILM shows how this exclusionary logic was present from the earliest descriptions of independent living. It is not only the limited success of the ILM that potentially justifies the continued exclusion of cognitively disabled people from the status of adulthood. That exclusion originated in the terms and definitions of who was even acknowledged as disabled in the first place. One of the open secrets of the early years of the disability rights movement is its often obvious discomfort with sharing the disability label itself with the so-called mentally retarded population. Just as with the internationally recognized graphical symbol for "disability" (the stick figure in the wheelchair), so did some of the most prominent spokespersons for independent living place physical disability and disability in a synecdochical relationship where the part stands for the whole (or vice versa). So, in both terminology and practice, the ILM made physical disability synonymous with disability itself. One way to understand the unnoticed implications of the essentialist logic for people with cognitive disabilities within the ILM is that the very terms of the movement did not recognize such individuals as disabled in the first place.

This exclusionary discourse continued even when the first flush of success prompted calls for attention to groups who had been previously excluded from the movement's analyses. When one of the earliest and best known interpreters (De Jong, 1984) of "independent living" described the progress of the ILM, he admitted that its "core constituency" (p. 40) had thus far been limited to young adults with a limited range of physical disabilities. The groups that he found "notably absent" (p. 41) from the movement were elderly people and racial minorities with physical disabilities. At that point, the absence of people with severe cognitive disabilities was not even "notable."

Again, my point here is not that early -- much less recent -- proponents of the ILM have intentionally adhered to an essentialist defense of personal autonomy as a way to distinguish themselves from undesirable association with cognitively disabled people. The attractions of searching for some common essence, some objective reality that grounds our identity, are often as unnoticed as they are irresistible. They can be found in equal force, and equal dangers, within the advocacy movements that have explicitly focused on people with severe cognitive disabilities.

Community Inclusion and the Cultural Dimension of Adulthood

The cultural dimension of adulthood is certainly related to such indicators of personal autonomy as employment and residence, but it also goes beyond such concrete personal circumstances. It is also perhaps even more problematic than the personal definition of adulthood for people with the most significant cognitive disabilities. It involves a more symbolic dimension of citizenship, membership, and reciprocity that I invoke when I speak of someone being "a responsible adult," or "a good citizen."

Unlike the ILM, many of the strongest early proponents of the Community Inclusion Movement came from the ranks of advocates for people with the most significant intellectual disabilities. The focus of the CIM on how to secure full adulthood for people with disabilities also changed. While inclusion is often seen as a call for educational integration of students with disabilities, the language of inclusion has been expanded by most of its interpreters to extend to other domains of life (e.g., Ferguson, Hibbard, Leinen, & Schaff, 1990; Taylor, 1988), including adulthood. Unlike the Independent Living Movement, however, the calls for community inclusion of adults with disabilities emphasized the cultural dimensions of adulthood over the personal.

Instead of a vocabulary focused on personal qualities of autonomy and self-determination, the CIM seemed to focus on the symbols of membership and participation. The argument, however, remained familiar. People with cognitive disabilities are essentially the same as everyone else. They deserve acceptance as full citizens of their communities in recognition of this essential sameness. Indeed, it is largely through the social dimensions of assimilation that full adulthood will be achieved. As part of the analysis of the symbols of adulthood, the avoidance of symbols associated with disability seemed equally important.

Perhaps the clearest demonstration of this argument is in the calls for "people first" language that many self-advocates and others within the developmental disabilities community have made. At least part of the obvious impetus behind the adoption of such terminology is the assertion that whatever differences reside behind the labels of intellectual disability, they should be inconsequential compared to our essential humanness. The linguistic reform is consistent with an implicit ontology that relies on a shared human nature that emerges when the cultural barriers to inclusion are removed. (My argument, here, looks only at the ontology behind the "people first" language. There may well be ethical and/or political arguments that counterbalance my conceptual abstractions The history of abuse, incarceration, and even extermination at the hands of people who denied their humanity, that has fallen especially hard and often on people with severe intellectual disabilities make those additional areas of argument particularly relevant.)

The risk in the cultural essentialism of some versions of inclusion is that its implicit denial of essential differences from the dominant culture can also deny people with cognitive disabilities access to the alternative cultures and traditions that the larger disability community is beginning to celebrate. In our struggle to surround Ian with the cultural symbols of adulthood, to have him fully included as an adult in his community, my wife and I worry that we are simultaneously isolating him from the equally important benefits of the being included within the larger disability community as well.

If, as I have argued, cognitive disability can be seen as the absence of culture, then gaining the benefits of the alternative cultures emerging within disability studies seems equally valuable to creating his affiliations within the mainstream culture. There are unique strengths, traditions, role models, values, and relationships that are available to Ian because he is disabled at a time when that is becoming a source of pride. Surely the status of adulthood for people with cognitive disabilities should be available without sacrificing a constructed identity as a disabled person as well. Indeed, the dichotomy seems to exist only as long as the essentialist logic posits them as incompatible concepts in the quest for the Truth about the nature of disability.

The Relational Approach to Disability and Adulthood

Essentialism in disability studies is like a fundamentalist religion: the security of the doctrine conceals the leaps of faith required to maintain belief. We seem to need the Manichaean dichotomy of devils and deity. Of course, whether one finds difference to be divine and similarity the road to hell or vice-versa, the solace comes from the clarity of conviction. What is truly hellish in such a theology is a tolerance of ambiguity and change. What is left for an interpretivist agnostic who has his doubts about heaven and hell? If both the personal and the cultural dimensions of adulthood have been captured by essentialist assumptions embedded in the most prominent reform movements of the past 25 years, where should an interpretive approach to disability and culture look for difference and similarity in adult life?

For me, the issue becomes one of how to advocate for Ian's adulthood in ways that do not, through the very act of my advocacy, emphasize how he differs from other adults (including those with other disabilities). Do I emphasize his differences and try to avoid the conclusions of inferiority that society has traditionally attached, or do I emphasize his sameness and risk perpetuating the same social rules and expectations that have already unfairly excluded him? Should Ian's adulthood look the same or different from the dominant cultural models, or from any alternative models presented by other parts of the disability community?

All of these issues are similar to the ones that feminist scholars such as Martha Minow (1990) and Anita Silvers (1995), as well as a few prominent interpreters of cognitive disability (Woodill, 1994; Zola, 1994) have written about. How am I to emphasize the differences that seem constitutive of Ian's identity as a disabled adult without unintentionally perpetuating the grounds for exclusion that the dominant culture has traditionally used to rationalize its denial of my son's adulthood? Minow has summarized this "dilemma of difference" with explicit reference to how it affects people with significant cognitive disabilities and those who advocate on their behalf:

Social, political, and legal reform efforts to challenge exclusion and degradation on the basis of assigned traits continually run up against the danger either of recreating differences by focusing upon them or of denying their enduring influence in people's lives. This dilemma of difference burdens people who have been labeled different with the stigma, degradation, or simple sense of not fitting in while leaving the majority free to feel unresponsible for, and uninvolved in, the problems of difference[D]ecisions about housing, education, and employment for individuals with severe mental disabilities add to the dilemma of difference the difficulty of learning what the individuals most affected would themselves want. (Minow, 1990, pp. 47-48)

I can only suggest the outlines of an answer here, and it is not original with me. I find the answer in relationships instead of essences, in the ambiguity and messiness of daily interactions. Much of Minow's "social relations" approach (and also articulately defended by Zola, 1994) seems a promising way to avoid the negative consequences of the "difference dilemma" quoted above, without trying to actually dissolve the tension. For people with cognitive disabilities, ironically, "inclusion within the independent living movement" is one of the practical examples of how this relational advocacy could work. If cognitive disability is characterized as the absence of culture, then moving to secure their status in either an alternative or a dominant culture might accomplish the same end of mitigating the negative consequences of being denied a cultural context. Instead of removing or dissolving the tension between sameness and difference (independent living or inclusion, disability culture or community integration), the relational approach avoids the essentialism implicit in the assumptions of the dichotomy.

We must, then, start to approach disability as relational not essential. To my mind that does not diminish disability, it does not discredit its centrality to our lives. Everything that tells us who we are, how we are the same and how we are different, is suspended in the webs of relationships that construct our culture. To interpret disability as relational simply shows us where to look, not what we should see. It only begins our search. When I look, I find disability in our affiliations with each other, our celebrations of difference, our struggles for equality. I find it in our cultural achievements and shared aspirations. I find it in our friendships and mutual supports. I find it in the history of our differences and our similarities. I even find it in our debates over who can really participate in the search for the meaning of those relationships: Who is "us" and who is "them"?

I find it most of all in the stories we tell each other about our lives. I find it especially in the stories my son helps me hear and see. I find it, in short, in the wink of an eye.

References

Bruner, E. M. (1988). Text, play, and story: The construction and reconstruction of self and society. Prospect Heights, IL: Waveland Press.

DeJong, G. (1984). Independent living: From social movement to analytic paradigm. In R. P. Marinelli, & A. E. Dell Orto (Eds.), The psychological and social impact of physical disability (2nd Ed.) (pp. 39-63). New York: Springer.

Ellis, C. (1993). "There are survivors": Telling a story of sudden death. Sociological Quarterly, 34, 711-730.

Ellis, C. (1995). Final negotiations: A story of love, loss, and chronic illness. Philadelphia: Temple University Press.

Ellis, C. ,& Flaherty, M. (Eds.) (1992). Investigating subjectivity: Research on lived experience. Newbury Park, CA: Sage.

Ferguson, D. L., & Ferguson, P. M. (1986). The new Victors: A progressive policy analysis of work reform for people with very severe handicaps. Mental Retardation, 24, 331-338.

Ferguson, P. M. (1994). Abandoned to their fate: Social policy and practice toward severely retarded people in America, 1820-1920. Philadelphia: Temple University Press.

Ferguson, P. M., & Asch, A. (1989). Lessons from life: Personal and parental perspectives on school, childhood, and disability. In D. P. Biklen, D. L. Ferguson, & A. Ford (Eds.), Schooling and disability: Eighty-eighth yearbook of the National Society for the Study of Education, Part II (pp.108-140). Chicago: National Society for the Study of Education.

Ferguson, P. M., & Ferguson, D. L. (1993). The promise of adulthood. In M. Snell (Ed.), Instruction of students with severe disabilities (4th Ed.). Columbus, OH: Macmillan.

Ferguson, P. M. , & Ferguson, D. L. (1996). Communicating adulthood: The meanings of independent living for people with significant cognitive disabilities and their families. Topics in Language Disorders, 16 (3), 52-67.

Ferguson, P. M., Hibbard, M., Leinen, J. & Schaff, S. (1990). Supported community life: Disability policy and renewal of mediating structures. Journal of Disability Policy Studies, 1, 9-35.

Geertz, C. (1973a). Deep play: Notes on Balinese cockfight. The interpretation of culture. New York: Basic Books.

Geertz, C. (1973b). Thick description: Toward an interpretive theory of culture. The interpretation of culture. New York: Basic Books

Goode, D. (1980). Behavioral sculpting. In J. Jacobs (Ed.), Phenomenological approaches to mental retardation (pp. ). Springfield, IL: C. C. Thomas.

Goode, D. (1995). A world without words: The social construction of children born deaf and blind. Philadelphia: Temple University Press

Jackson, M. (1989). Paths toward a clearing: Radical empiricism and ethnographic inquiry. Bloomington: Indiana University Press.

Lareau, A. (1989). Home advantage: Social class and parental intervention in elementary education. New York: Falmer Press.

Liebow, E. (1993). Tell them who I am: The lives of homeless women. New York: Penguin Books.

Lightfoot, S. L. (1983). The good high school: Portraits of character and culture. New York: Basic Books.

Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca, NY: Cornell University Press.

Mishler, E. G. (1995). Models of narrative analysis: A typology. Journal of narrative and Life History, 5 (2), 87-123.

Polkinghorne, D. E. (1988). Narrative knowing and the human sciences. Albany: State University of New York Press.

Richardson, L. (1992). The consequences of poetic representation: Writing the other, rewriting the self. In C. Ellis & M. G. Flaherty (Eds.), Investigating subjectivity: Research on lived experience (pp. 125-137). Newbury Park, CA: Sage.

Ricouer, P. (1981). Hermeneutics and the human sciences. New York: Cambridge University Press.

Rusch, F. R., Destefano, L., Chadsey-Rusch, J., Phelps, L. A., & Szymanski, E. (Eds.), (1992). Transition from school to adult life: Models, linkages, and policy. Sycamore, IL: Sycamore Publishing Co.

Rusch, F. R., Szymanski, E. M., & Chadsey-Rusch, J (1992). The emerging field of transition services. In F. R. Rusch, L. Destefano, J. Chadsey-Rusch, L. A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life: Models, lindages, and policy (pp. 5-15). Sycamore, IL: Sycamore Publishing Co.

Silvers, A. (1995). Reconciling equality to difference: Caring (F)or justice for peole with disabilities. Hypatia, 10 (1), 30-45.

Taylor, S. J. (1988). Caught in the continuum: A critical analysis of the principle of the least restrictive environment. Journal of the Association for Persons with Severe Handicaps, 13, 41-53.

Watson-Gegeo, K. A. (1991, April). Toward thick explanation in ethnographic research. Paper presented at the meeting of the American Educational Research Association, Chicago, IL.

Whyte, W. F. (1955). Street corner society. Checago: University of Chicago Press.

Williams, G. H. (1983). The movement for independent living: An evaluation and critique. Social Science and Medicine, 17 , 1003-1010.

Wisdom, J. (1965). Paradox and discovery. New York: Philosophical Library. Wolcott, H. (1994). Transforming qualitative data: Description, annalysis, and interpretation. Thousand Oaks, CA: Sage Publications.

Woodill, G. (1994). The social semiotics of disability. In M. H. Rioux & M. Bach (Eds.), Disability is not measles: New research paradigms in disability (pp. 201-226). North York, Ontario: L'Institut Roeher Institute.

Zola, I. K. (1994). Towards inclusion: The role of people with disabilities in policy and research issues in the United States -- A historical and political analysis. In M. H. Rioux & M. Bach (Eds.), Disability is not measles: New research paradigms in disability (pp. 49-66). North York, Ontario: L'Institut Roeher Institute.

Index