The place of theorizing disability in everyday lives was investigated and how theorizing that is available in academic discourse can move from the ivory tower to be the “stuff” of everyday life conversations, with practical usefulness when put in the hands of nonacademic users, was discussed. Examples in which accessibility to scholarly theory resonated with families and support staff in their daily lives were provided. A rights-based theorization of disability with its corresponding feeling of power was contrasted with a relationship-based theorization with its corresponding power of feelings. The contrast is suggested to demonstrate the usefulness of drawing on theorization to expose personal theories-in-operation and invigorate personal practices of inclusion.
The Ivory Tower and the Streets
The distance between academia and the “real” world still inspires references to the clichéd “ivory tower.” One has only to attend a few sessions at a disability studies conference to know that inaccessibility involves more than built spaces and technology. After some 20 years “in the field” of developmental disability services delivery, I took a respite in academia. I hungered for grounding that seemed elusive in the intensity of day-to-day services, even ones considered progressive. To my gratification, I found not just anchoring but invigorating ideas that I felt had been hidden from me and my workaday colleagues. I am still trying to wed the two experiences (as will no doubt show in my struggling attempt here to move past the flirtation stage of my new infatuation to form a long-term relationship). Both humbled and exhilarated by ideas to which I had not previously been exposed, I reveled in the luxury of my break. My enjoyment slipped to guilt as I questioned why I had not known these ideas were in circulation. Had I been remiss in my reading regimen? Had we at my progressive organization been too insular? Probably both, but also, some powerful ideas (or their proponents) did not reach out to us and certainly had not done so in a form that was easily accessible. Would we really have found, much less read, a paper entitled “Brueghel's Beggars and Raphael's Transfigurations: Renaissance Windows to Our Understanding of Disability, Diversity, and Culture” (Werblood, 2001)? Even a more homespun title such as “Disabilities is Not Measles” would probably have been passed over on noticing the subtitle: “New Research Paradigms in Disability” (Rioux & Bach, 1994).
Contrary to the clichéd distance, however, I found the tower and the streets are not that far apart (and the ideas behind the above titles to be eminently practical). Exposure to serious current scholarship in disability studies reveals that careful examination has long been underway, with investigators questioning the images that bombard us daily on the streets through movies, television, advertising, novels, and ordinary conversations (e.g., Hahn, 1993; Thomson, 1997; Zola, 1993). However, even these familiar sources are sometimes theorized in the inaccessible language of academic terms, such as ontology and epistemology, postmodernism, and social constructionism (although there are certainly notable exceptions, such as the publications of academics affiliated with the Center on Human Policy at Syracuse University). I am not saying there is no place for intellectual discourse that is not accessible to all. I am saying we might expose the power of ideas “on the street” that are hidden from view by taken-for-grantedness, by harnessing theories that are “in the tower” but hidden by inaccessibility. I am saying that the rest of us miss out on some moving ideas if they are not translated and made available for wider consumption and conversations where they can touch, disturb, and inspire.
What Me? Theory?
I do not remember talking much about theory on the services delivery side of the street. We definitely did not use terms like postmodernism or social constructionism. Even if we did not talk theory, however, each of us operated under our own ever-present ontology and epistemology (i.e., under our personal theories of how things work based on our beliefs about how the world is and how it is we know what we know). For people with disabilities these operating theories have consequences—sometimes life and death consequences but always very real quality-of-life consequences. I want to reflect here on theory “coming over” to our side of the street in the daily lives of service delivery folks making day-to-day decisions who (like me) thought of theory as an ivory tower thing.
The case I want to make is for big ideas being made more accessible and opportunities to experience them being more readily available. Engaging big ideas can be a way to pique skepticism and question “taken-for-granteds” in our personal repertoire of daily service-world producers. Asking why and how questions, such us “What are we doing, why are we taking that approach, and what makes us think that will get us where we are trying to go?” is a practical form of theorizing. By exposing our internalized theories-in-operation, we can choose either to renew our vows to our current approaches or consider different alternatives. Why and how are theorizing questions. They can also be reflective practices that unearth the largely unconscious routines by which we conduct our inner- and interpersonal lives and worlds (Schon, 1983; Schon & Rein, 1994). Our theories in action produce a behavior world by the way we frame our roles and determine which problems we seek to solve (Schon, 1983; Schon & Rein, 1994).
As an example of an excavating dig, I will contrast rights theorizing and a different approach in relational theorizing. By using this very modest contrast project, I look more closely at some of the personal operating theories of nondisabled people that affect the daily life of people with disabilities. I argue, as have others (e.g., Young & Quibell, 2000), that rights are not enough. I argue the need for a relationship-based agenda as a necessary compliment to a rights-based agenda. In uncovering the “why” and “how” assumptions of a rights agenda, we find the unconscious routines of interpersonal relations underneath, like who we are and who and how we are to each other. By examining relationships I do not mean to replace concern about rights or the need for social change, but by opening reflective conversations about relationships, I hope to bring attention to how our personal operating theories are embedded in meanings that circulate widely in society and underpin the social consequences that we seek to change (Schon, 1983).
Back to the street: Although we in the field did not talk much about theory (we did not consider normalization or social role valorization as theories so much as instructions); we were usually indoctrinated by our organizational cultures to a particular understanding of how things are, how they need to change, and what would bring about change. For example, in the organization where I worked in the 1970s during the heady early days of deinstitutionalization, we were acculturated to know that institutions were wrong, that we were part of a revolution, and that we could get people with disabilities out of institutions into the community if we pushed them through the barricades. Our unspoken operating principle was “rights-by-God and community-by-occupation.” Neighborhood meetings were angry affairs, where clashing moral rights were argued and competing legal rights were debated. We saw the environment as an adversary (clearly it often was and is), but we did not theorize too much about why seemingly nice community members would act unwelcoming and uncivilly. We did not ask what was going on inside the minds and hearts of “those” people that led them to feel and act so unkindly, scared, or angry. We did not speculate much about why people in neighborhoods found it so distressing to anticipate new neighbors with disabilities. Our operating theory assumed that historical absence explained it and that the routine presence of people with disabilities would change their minds. In the urgency of our mission, we did not “waste” time exploring how that would come about. It would just happen. In truth, it did, sometimes. Some bad guys came over to the good guys side; and sometimes they did not.
Theorizing Good Guys and Bad Guys
If we did not theorize incivility, we surely did not theorize nondisability, the “us”-ness that most of us would-be-champions shared with the resistant public on whom we were foisting our protégés. Nor, for that matter, did we theorize why some members of that same public were indeed welcoming. They were like us, good guys. We did not consider ourselves as part of the resistant public (much less question any of our own privately held resistances or personal practices). Our theory of change seemed to be that visibility would lead to acceptance when those previously isolated neighbors could see the unreasonableness of their worries. If we just gave peace a chance … Clearly, this approach can and sometimes does work, but it does not explain why it sometimes does not. (I am definitely not arguing waiting, but rather wondering why.)
So through the 1980s we kept “placing.” While scholars were theorizing about the social model of power relations in society and civic relations (e.g., Oliver, 1996), we services-types were just interested in civil relations with the neighbors next door. While disability scholars were shifting the focus from the deficits of people with disabilities to the disabling social environment (e.g., Swain, Finkelstein, French, & Oliver, 1993), we were focused on the deficits of neighbors and simplistically dividing the world into good guys and bad guys.
A theory is not a moral scolding; it is a suggested answer to a serious question. Why do otherwise good people sometimes behave badly toward people with disabilities? Why is disability so repellent to many people (some with but more without disabilities)? Why is it not so for other people (both with and without disabilities)? Why does one neighbor bake a welcome cake, another pull down the shades, and another contact a lawyer? Why do some parents abort an expected child because of a disability and others seek out the opportunity to raise a child with a disability through adoption or foster care? As we wonder about the privately held personal operating theories of others, we need to also explore our own privately held operating theories. I submit that we everyday-life practitioners are ripe for harnessing available scholarship to question the operating theories of our own thinking that organizes the world into the good, the bad, and the disabled.
In categorizing people, what keeps us apart is, of course, more than terminology. It is (usually) more complex than rude incivility and brute arrogance. Many of us and our nice neighbors want to be congenial but still maintain distance from people with disabilities and participate in their exclusion from economic and political participation. The factors that work on us are subtle and, thereby, insidious. The social distance from people with disabilities in our ordinary lives and ordinary living raises questions about what being nondisabled means (Berube, 1997; Davis, 2002).
The meaning of disability and mechanisms of transmitting its meaning have been and are being actively theorized in academia (Berube, 1997; Bogdan & Taylor, 1993; Davis, 2002; Linton, 1998; Oliver, 1996; Zola, 1993). Although Bogdan and Taylor have pursued a sociology of acceptance that recognizes positive relationships between people with and those without disabilities, they acknowledged the need to assert acceptance as an exception to the more prevalent negative view.
Theorists have challenged the power and privilege that certain identities claim. The study of power relations and privilege has a long history outside disability study (e.g., feminist theorizing and practice). Feminism has highlighted how gender operates in building a sense of who we are and how the world works in ways that have privileged men and maintained power in male hands (Chodorow, 1999). A similar ground-shifting movement has been underway in disability scholarship (Linton, 1998; Oliver, 1996; Swain et al., 1993; Wendell, 1996). Questions have shifted from how people with disabilities “are” (e.g., impaired) to speculate about how ability operates to have and hold power and privilege and how the world works through the identity categories of ability and disability (Davis, 2002; Linton, 1998; Oliver, 1996; Rioux & Bach, 1994; Thomson, 1997).
Part of the parallel shift in feminist and disability scholarship (arguably parallel, but not necessarily shared) has been propelled by women and people with disabilities moving into academia and challenging the way we construct the world (e.g., Hahn, 1997; Linton, 1998; Oliver, 1996; Thomson, 1997; Wendell, 1996). As people with disabilities have moved into academia, ideas within academia have moved. The parallel shifts have challenged assumptions of biology as destiny. The rights agenda that is such a staple of work in disability activism is consistent with the shift from a focus on the biology of functional impairments as destiny to a challenge of privilege and power (Linton, 1998; Rioux, 1993; Rioux & Bach, 1994; Thomson, 1997; Wendell, 1996). But we good guys know about rights, right?
Back in the service world, the rights agenda (rightly) has been challenging privilege in its own way (Rioux, 1993). In the earliest days of deinstitutionalization, integration was powered by the rights agenda. With well-deserved recognition, rights activism achieved a more demanding standard of inclusion; but the rights agenda itself holds an unshakable them/us distinction (Davis, 2002). Although the notion of inclusion intends to remove the we/they distinction, sometimes our championing practices have not yet made the transition from getting them with us to seeing that them is us (Davis, 2002). A new discourse in services reflects a corrective effort to notice the gifts and contributions of people with disabilities (O'Brien & O'Brien, 1999). Sometimes inadvertently (sometimes consciously), this noticing seems to see worthiness as earned by contributions. In earned inclusion the barricade is made passable by the bribe of a gift rather than stormed as a right. It is not my intent to engage a debate between earned and natural rights but, rather, to pose a genuine question. Why is it so hard to use existence as human beings (without needing to invoke contributions or rights) to identify or award us-ness? Resistance to the simple notion of “us” raises subtle yet powerful epistemological and ontological questions: How do we know (epistemology) ourselves to be (ontology)? What kind of “we” allows “us” not to include “them”? To answer these questions, we must get down to self–other contrasts and engage our beliefs and the emotional animation that accompanies them (Chodorow, 1999). In answering questions about the “other” side of self–other, we need to shift our focus closer to home, to the self side. After all, if inclusion's “all means all,” then all means each, and each means me.
Bringing Theorizing Home
In moving our focus on self–other contrasts closer to home, we cannot untangle the personal and the political. Neither can we untangle the political and the relational. A power analysis puts the focus on the powerful and rightly raises questions about being nondisabled. Although power most certainly plays a role in explaining disability, it does not explain well why particular forms of human variation set the power differential in motion. Why do leg impairments requiring braces accrue the lower status of disability whereas eye impairments requiring glasses do not? Why do children with a disability elicit voluntary checks to telethons while adults with the same disability elicit only begrudging checks to tax departments. Why do store advertisements now include models sitting tall and straight in wheelchairs, but not models whose shapes and sitting positions are less erect or symmetrical? A power analysis can be used to describe status and social positioning and suggests reorganizing social arrangements as a corrective; but it cannot be used to examine the feelings of the excluders that underpin the arrangements.
The social model can remain subtly and safely anonymous, applying to those bad guys, but not me. Closer to home, in the day-to-day life of the self and the self–other contrast, is a deeply personal feeling world of inner life and relational life as well as an organization of external arrangements in the social world. When we interact with each other, we react to “subjectivized” characteristics (Chodorow, 1999). If subjective reactions can activate power, what activates the subjective? Of course, inner experience and social experience are inseparably intertwined. The subtle play of social organization works on all/each of us. The rights agenda implicates the feeling of power, but what interests me here in this mini-excavation is the power of feelings that activate (or not) a sense of shared “we”-ness.
More feelings are at work than the feeling of power. How we are with others depends not only on what we think about the superiority of certain characteristics, but what we feel about them. Our feelings are activated by our broad social contexts, but also by the context of our immediate relationships and by the internalized relationship legacies that fill our autobiographical pasts. A particular feeling condenses and expresses an interpersonal story as well as a cultural story about self and others (Chodorow, 1999). Our interpersonal stories unfold in relationships, past and present. We all have these stories; we each have these stories. They are stories powered by feelings (Chodorow, 1999).
Both external arrangements of power (Oliver, 1996, Rioux, 1993) and interpersonal stories powered by internal feelings have been actively theorized in academia (e.g., Bogdan & Taylor, 1993). They are also being discussed in service delivery forums. Theories of power are implicated in the service world in challenges raised by the self-determination movement and its goal of empowerment (Self-determination, 1998). Self-determination specifically challenges the locus of power. Theories of interpersonal feeling are implied in the service world in person-centered planning and circles of support (Amado, 1993; O'Brien & O'Brien, 1999), which are designed to enlist relational connections. Circles implicate the realm of feelings as a key element of personal relationships. Where people have emotional connections through families and friends, their circles intentionally exploit (in the good sense) those affectionate feelings. Where people do not have active connections with family and friends, service actors are enjoined to invent them or act by proxy. At this intersection, like any social intersection, the powerful and the personal converge—or collide? (Uditsky, 1993).
Whether articulated or not, a distinction between the external arrangements of social position and the internal feelings of relationship is surely keenly felt by the focus person centered in the circle. In the real world where genuine relationships unfold, feelings of connection (as well as power) are inseparable from the exercise of those relationships. A relationship is more than the description of two individuals' hierarchical positions relative to each other; it is a description of their feelings for each other. Inner experience is at the root of relationships. We need to address the inner experience as well as the social organization that affects each of all of us. Simply put, we need relationships in addition to rights to carry forward the meaningful practice of inclusion.
This is where the tower can meet the street. There is scholarship in circulation that theorizes about the inner life. However, some scholars narrowly continue to focus exclusively on the inner life of persons with a disability. For example, counselors are still taught that disability is a problem of individual adjustment to impairment (Rosenau, 2001). Disability scholars, especially those who have disabilities, have turned questions of the inner life toward all-means-each of us. Some of these powerful ideas, however, can be inaccessible to service deliverers when framed in esoteric language that can turn-off rather than -on some of their most promising practitioners. Hahn's (1988, 1997) twin theories of existential and aesthetic anxiety are an example of theorizing that acknowledges inner experience. However, these theories are also examples of how the inaccessibility of the terms themselves may scare away some potential theory users. Usability, unfortunately, may lie available but just out of reach for want of an accommodation, that is, an environmental modification (in this case, language) to increase access to opportunity. Let me explore Hahn's ideas briefly as an example of the potential of scholarship if it can reach the street.
Hahn (1988, 1997) theorized existential anxiety as fear of our own decline or perceived threat of physical loss, a fear that operates in leading us to reject or deny our real aging “imperfect” selves and inevitable experience. He theorized aesthetic anxiety as distress about our perceived distance from an ideal of attractiveness, an angst that operates in leading us to deny or reject our real selves even though the ideal is fictional and unreachable. These two interrelated concepts offer a compelling analysis that helps explain factors that work on each/all of us, affecting our thinking and our feelings in constructing disability negatively and marginalizing people with disabilities. The theories add inner experience to compliment a power analysis and contribute to explaining the bad in us otherwise good guys.
When I first read these theories, I was both captured and disturbed because they touched me and my nice family and friends, and my own autobiography and fantasized future. In looking back at injuries I incurred as a young woman in an auto accident when I was at risk of a leg amputation, I recognized now the terror I felt then was far more motivated by the aesthetics of an altered appearance than the logistics of a functional impairment. Looking back, I can admit that I feared that those aesthetics would affect my relational future. I was well aware of, but totally uncomforted by, the knowledge of rights protections if my future included disability. Fast forward to my exposure to the theorization of aesthetic anxiety. Now armed with that theory, I understand that I was simply wrestling with the core of me. If I was only loveable in the pre-threat physical form, then who was the me who was loveable? And what kind of love worth having would only love that pre-threat physical form? And whose love was I concerned about, my fantasized future lover or my own self-loving self? These were interpersonal story lines powered by feelings. The theorization of anxieties was a secreted idea that I wish had circulated in my personal as well as my service world; and if it had, would this knowledge have changed anything? I am not saying it would have served to remove the struggle, but I am saying it might have helped me face it for what it was. It might have pointed me toward the unreasonableness of my socialization rather than toward my need to “adjust,” as some rehabilitation counselors suggest (Rosenau, 2001), to a less desirable state of being.
The inaccessibility of these powerful ideas, and, consequently, their unavailability to challenge the “unthought knowns” (Bollas, 1987) of daily practice, lies only partly in inaccessible language. One accommodation that would make these ideas more readily available is translation into language that is familiar. Of course, however, the problem of accessibility is more than terminology. What is required is not only the choice of words that are more recognizable, but the choice of medium to convey them. These ideas need to move out of academic journals, conferences, and textbooks and into service-world discourse, not as new jargon, but as new jarring, to shake loose our hidden-from-view inner-operating theories.
In the service world, discourse is often initiated and conveyed in training, staff meetings, workshops, and organizational cultures. Academic and service delivery forums and cultures are speaking in different discourses. When we examine the conference agendas of services delivery forums, we see rational technical advice (Schon, 1983) about programs, funding, technology, and skills development. When we examine the curriculum in training courses for service deliverers, we find course outlines that address rights, citizenship, self-determination, and person-centered planning, where the individual with a disability is (literally) the focus person. We need to ask whether and where these important and necessary perspectives are complemented by opportunities to self-reflect on the inner life of us nondisabled supporters as the focus person. We need to ask what opportunities are provided for access to and challenge of our deeply held, taken-for-granted, culturally embedded notions of disability. That kind of reflection could be activated by ideas such as aesthetic and existential anxiety imported from disability studies scholarship.
So, some powerful ideas that circulate among ivory tower disability scholars have not yet reached the service-world venues, where practical consequences could be put in motion, activated by me-too reverberations. Importantly, what is called for is not more topics in training to tell about theories, but more challenging opportunities for critical self-reflection aided by big ideas that touch at a personal level and challenge our personal taken-for-granted “knowledge,” that tap both our logic of being and relating and our feelings of being and relating (Bollas, 1987).
Putting theorizing to work in everyday lives requires not only tapping ideas of disability scholarship, but tapping feelings of everyday relational life. Let me push the aesthetic and existential anxiety case a little further as one of many examples of the practicality of theorizing in everyday life that has not received nearly enough attention in relation to potential usefulness. Esoteric sounding ideas, such as existential and aesthetic anxiety, need to be made visible and audible in everyday conversation to come alive for nonacademic audiences in order to rouse attention to subtle, but powerful mechanisms that work on all/each of us.
In my interactions with families who have members with disabilities and family support workers, I have experimented with sharing these concepts. Together we have “tried on” Hahn's theories in exploring our feelings and everyday social interactions. Reactions to the translated concepts of aesthetic anxiety and existential anxiety routinely bring an “aha” awareness. These ideas resonate easily with nonacademic folk. Part of their intrigue, I suspect, may lie in gaining access to the secret language of academics, but, more importantly, the ideas seem to echo some already held understanding that lay just out of range of expression. Even more importantly, these theories became actionable for participants in the exploration. They sometimes lay out a chain of logic that helps the hearers move from awareness to behavioral change (or at least that is an operating theory I hold). Made accessible, the notions hold utilitarian value with potential to be set in motion. These exchanges demonstrate that theories can be put to practical use.
In sharing explorations of these concepts, parents and support staff said they saw life lessons they could apply to all/each of their children (with and without disabilities) back home in their ordinary lives. They reported that the concepts could be used to explain a teenage daughter's shamed angst over her weight or a gawky high school son's tendency to feel “out-of-it,” or a participant's own unsuccessfully resisted discomfort with turning 50. Co-explorers saw how theories could be used in kitchen-table conversations to challenge societal pressures and, in doing so, dilute those pressures to help their children and themselves (re)connect to a different source of pride on which to ground their identity than unreachable and hurtful aesthetics. By challenging the basis of pride, they could help their children resist some advertiser's version of idealized appearance and replace it with because-you–are-you personhood pride. The grounding was “simply” existence as a loved human being and identity as a family member. They (re)discovered that identities that mattered were relational categories rather than descriptive categories of appearance. When the exact nature of the ideals and expectations circulating in the everyday world were unearthed, both their power and their elicitation of feelings could be dismantled and diffused. Not coincidentally, their experience traced my own journey as I (re)discovered my lovability was not grounded in my appearance. Not coincidentally, this is the same excavation of anchoring that challenges ideas we hold about disability (Davis, 2002; Thomson, 1997; Wendell, 1996).
Our exploration made a connection; it resonated. It worked because aesthetic and existential anxiety are more than ideas—they are feelings. Although the idea of anxiety came with an “aha,” it did not go away with it. Rather, the idea tapped a recognition of an unthought known (Bollas, 1987), a feeling response that had become automated somewhere in our culturally embedded, interpersonal histories. By recognizing the feeling we could name it, claim it, and mount a resistance to the pretense on which it is based. Put more positively, we could generate a replacement feeling of pride to override it.
Let me offer one other example where the power of feelings was intentionally activated to generate a relational solution where a power analysis alone could not: the experience of recruiting foster or adoptive families for children with disabilities. Over the years I have had the opportunity to know several hundred families who have chosen to welcome a member with disabilities (see also Bogdan & Taylor, 1993). Successful recruitment strategies were not activated by a rights agenda. A child's right to family life as a cognitive idea was not sufficient motivation. We found we were most effective using a relational approach. The logic of successful recruitment was emotional. We invoked aesthetics: “What a great smile she has” or “He has the most beautiful eyes.” We tapped the existential longing of potential recruits to do something meaningful with their life, to make a future difference. We unashamedly played to the emotional imagination of a child's longing to be held and a parent's longing to hold. We did not talk about the social model of disability with families; neither did we talk about aesthetic or existential anxiety. We did, however, clearly invoke or evoke both. We talked about institutions and rights and particularly the birthright of a child for family life. That piqued their interest; but we also talked about longing and hunger. That piqued their feelings. We reinterpreted traditional aesthetics and reflected on the meaning of life. We reflected together on what it means in our society to be a person and how it feels to be a parent, a child, a family member, or alone. It was feelings that motivated life-changing decisions for institutionalized children, not awareness of abrogated rights and not feelings of compassion, but feelings of connection, feelings of relational attachment. And, importantly, it was not an anonymous discussion in the abstract. Successful parents made contact with the childness and parental relationship needs of a real child. In that emotional connection the negativity of disability lost its power. Aesthetic and existential fears dissipated in the social construction of a relational attachment (Bogdan & Taylor, 1993).
Ideas activate us when they touch our feelings and find their source in our inner life. It is our connection to the idea of disability emotionally as well as intellectually that activates our resistance (whether it is resistance to disability or resistance to the negative meaning that has been assigned to disability). Ideas work when they expose the emotion as well as the logic of our theories-in-use about certain appearances and characteristics. Perhaps by facing the emotion, we can challenge the operating theories we actually use. Perhaps by everyday theorizing and reflective practice, we can begin to understand and feel how we “know” ourselves to be and, maybe, stimulate epistemological and ontological awakenings. As we begin to critically examine how our inner life and sense of ourselves is grounded and how gravity-like cultural ideals pull us to understand particular configurations of people's characteristics emotionally as desirable or undesirable, perhaps we can find practical value in awareness of operations that work on all-means-each of us in order to mount a more effective resistance campaign than awareness of rights inequalities alone inspires.
For me, these ideas took hold when I discovered both that they worked on and how they worked on each-means-me. They extended their reach to my inner experience, which is where each of us ultimately has to wrestle with real everyday life. I first had to claim my discomfort. In recognizing my own discomfort, I feel guilt about my complicity even while I am actively engaged in rights work. I feel shame at my shallowness. I feel foolish for having fallen for the trick of circulating aesthetics and for grounding my own pride on principles I was trying to resist in my work with people who have disabilities. But I also feel angry about the goofy way things are organized and ideas are grown in ways that hurt me and people I care about as well as people I do not even/yet know. Those feelings can become activating mechanisms that propel theories into practice. In fact, only when feelings are activated can theories be effectively put in practice. To extend the privileges of the citizenship-club-embrace to all, we are each responsible not only for the membership rules but for the feeling of membership.
We need to add to our repertoire of activating ideas a different kind of analysis than the feeling of power; we need to harness the power of feelings (Chodorow, 1999). As good teachers know, and increasingly neuroscience shows (Greenspan, 1997), real change/learning occurs most effectively when we experience emotional connection with the content and a relationship (i.e., emotional connection) to the content deliverer. Benefits are activated when we address our hearts as well as our heads. Relationships are fundamentally emotional experiences as well as social positions. When we face our feelings (of discomfort as well as connection) and address their source, we might be better able to harness them as an activating force. Big ideas such as aesthetic and existential anxiety offer not only explanation but also inspire a healing way out of harmful practices that work on all-means-each of us. This can be the “stuff” of everyday life conversations with real world consequences.
Theorizing Rights and Relationships— Both/And
Let me reiterate that shifting attention to internal experience does not negate the need for change in societal arrangements that disadvantage people with disabilities but, rather, seeks to better understand the emotion-laden identity categories and attributions that define who we are to one another and underpin those social arrangements. A rights agenda that invokes a power analysis rightly challenges hierarchical social arrangements. Power describes relationships as positions. A relational approach describes relationships as feelings and invokes a different analysis that focuses on subjective internal experience. The power analysis engages the head; the relational analysis engages the heart. I am not arguing either/or, but rather both/and. Both analyses can challenge the taken-for-granted negativity of disability.
Disability scholars have challenged the meaning made of disability as contestable and negotiable. Meaning, however, is more than a cognitive experience; it is an emotional experience, grown up in interpersonal stories (Bogdan & Taylor, 1993; Chodorow, 1999; Greenspan, 1997). The judgmental striving for perfection at the core of attractiveness and the fear at the core of mortality and uncertainty on the path to get there need addressing to affect hearts and minds that otherwise require imposition of legislation to counteract. In examining our own feelings, we may find the underpinning that sustains the negativity we seek to correct through the rights movement. The power of feelings can be put to work to change social arrangements. Beyond, or rather under, a rights-based agenda is a relationship-based agenda, and underpinning a relationship-based agenda is what it means to be human and how we know each other to be. We real-world street practitioners could benefit from importing ivory tower theorizing and discover that big words and big ideas have a place in everyday life.
I thank the anonymous reviewers whose challenges helped to push my thinking as well as the organization of this paper.
Author: Nancy Rosenau, PhD, Executive Director, Everychild, Inc., 9430 Research Blvd., Echelon IV, Ste. 300, Austin, TX 78759. email@example.com