Abstract

Seeking away of dynamic balance in the midst of uncertainty and ambiguity is both a core Daoist teaching and a central experience of individuals living with chronic disability or illness. This essay incorporates core Daoist themes to map alternative ways for thinking and talking about disability and chronic conditions. A Daoist worldview can offer distinctive modes of responding to chronic disabilities which move beyond the standard or typical models. Daoism illustrates that many forms of human embodiment are aspects of a single, ever-changing way and invites the integration of disability into the understanding of human life without necessitating categorization, definition, or cure.

Introduction

Seeking a way of dynamic balance in the midst of uncertainty and ambiguity is both a core Daoist teaching and a central experience of individuals living with chronic disability or illness. In an effort to minimize ambiguity and explain disability, western social-scientific models tend to isolate and label individual bodies with descriptive categories such as healthy or sick, normal or abnormal, abled or disabled. Medical, religious, and social models are some examples of the types of explanations offered to help people define disability, and if possible, minimize or eradicate it from the human experience. In this essay some of the standard models used to categorize those with disabilities are highlighted. Elements of a Daoist perspective on the importance of destabilizing conventional categories in order to enable a creative and harmonious response to an ever changing reality are offered.

Daoism is a multifaceted, complex combination of religious and nonreligious traditions indigenous to ancient China. The authors are not experts in Daoism and this paper makes no effort to simplistically summarize a complicated and diverse spiritual tradition in a few pages. There are many approaches to Daoist views of wellness and difference; however, there are some important similarities that can be used to help us think about disability. In this paper we humbly and incompletely articulate some tentative contributions that Daoism might make to the expanding field of disability studies.

One of the challenges for persons with disabilities is resisting the imposition of the various models and definitions onto their bodies, lives, experiences and perceived capacities. Those who live with disabilities and chronic conditions know all to well that human bodies defy categorization and explanation. It seems to be human nature to want to explain the unexplainable. Thus the desire to neatly compartmentalize and explain away the body's lack of cooperation with "normal" functioning is understandable; but, on a cellular level, is futile. Questions and statements like, "Why did this happen to you/me?" "Can't it be fixed?" "What are God/the universe trying to teach you/me?" "You/I are disabled because…" or "you/I would be healed if you/I just…" are often more frustrating and infuriating than the actual physical challenges of illness or disability. The purpose of this essay is to explore disability, or life experience, as one form of many human variations. The life experiences of the "disabled," no more than the "abled," do not adhere neatly to a particular model of what it means to be human, abled, or disabled.

How then, given human propensity for explanation and categorization, might the topics of disability and chronic conditions be explored, avoiding the limitations and restrictions of models and definitions? The purpose in this essay is to map an alternative way (to use Daoist terminology) for thinking and talking about disability and chronic conditions. The metaphor of a map is used intentionally because unlike many models and definitions, a map often reveals a variety of routes or ways which can lead to one's ultimate destination. Some of the routes are straight forward and direct, others are slower but more scenic, while still others are windy, hilly, and more challenging, but each can direct a traveler to a destination. The route taken may be dependant on point of origin, on resources and/or abilities, or on goals and objectives for the journey. No one way or route is necessarily superior to another, just different with different challenges and rewards. The map or guide in this essay for thinking about disability is a few helpful notions from the broad, complex fabric of Daoism. Some central elements of a Daoist worldview can offer alternative ways of thinking about and responding to chronic disabilities which move beyond the accustomed models. Other authors (Miles, 2002) have argued for a different, more socially holistic model of disability based on Daoist perspectives. Daoism, however, does not simply offer an alternative model, but helps to destabilize taken-for-granted categories which enables more creative, innovative, and harmonious thinking about disability and its pervasive role in human experience.

Elements of Daoism

While Daoism is vast and diverse, there exists broad scholarly agreement that two classical Chinese texts, the Daode jing (Book of the Dao and its Virtue) and the Zhuangzi (Book of the Master Zhuang) are central in the establishment and development of Daoist traditions. The Daode jing is a short text in about five thousand characters, divided into eighty-one brief chapters written in steady verse, dating to the third century C.E. Although the Daode jing has often been hailed as representing the core of the Daoist worldview, it is a multifaceted work that can be read in at least two different ways: as a document of early Chinese culture or as a scripture of universal significance (LaFargue, 1992).

The basic concept in the text is dao or "way." It can be understood either metaphysically as the underlying source and power of the universe or practically as the way in which the world functions. The text does not make its understanding easy. Rather the first chapter begins by saying that Dao cannot be named or known with ordinary human senses. Although ideally at the root of an ordered cosmos, the dao over the course of human history and the unfolding of culture has come to be buried under the complexity of social structures and conventional patterns of thought. To recover the original harmony of all and thus a state of peaceful balance, people should practice simplicity, non-action, i.e., cultivate freedom from all invasive and personally motivated tendencies, and embracing all beings while developing peace within and benevolence without (LaFargue, 1992).

Similar ideals are also present in the Zhuangzi, compiled in the mid-third century B.C.E. and associated with the thinker Zhuang Zhou (c. 370-290 B.C.E.). The text consists of thirty-three chapters and is written in prose (Watson, 1968, 1996). Its many stories, fables, and fictional dialogues made it the first text of classical Chinese fiction, and its worldview and language have inspired literary works as well as religious visions over the centuries (Mair, 1983). The book defines the dao not only as the core power of the universe but also as the inherent quality all people and beings have that determine the way they think and act. All beings can find an ideal state of "free and easy wondering," realize their inner core of spontaneity to the fullest, and attain "perfect happiness" by being who they are and accepting where they stand in life (Graham, 1982).

Daoism, unlike Christianity or Buddhism, has no single founder, nor does it have a single key message, as in the Christian gospels or the four noble truths of Buddhism. Rather, Daoism bears witness to a history of perpetual transformation rather than a linear progress or development. Whereas Western religions tend to place their trust in an invisible stability that somehow transcends the fleeting experience of time, Daoism recognizes and celebrates the profound and mysterious creativity within the very fabric of time and space itself. In the most general terms, Daoism seeks dynamic harmony in the midst of constant change. The dao, or way, is affiliated with rhythms of cosmic energy that ebb and flow beyond the limits of human understanding but nonetheless maintain a discernable pulse or pattern. The intellectual historian Benjamin Schwartz describes it as "organic order" — "organic" in the sense that it is part of the world and not a transcendent God, "order" because it can be felt in the sense of organized patterns (Schwartz 1998). Dao, as the one power underlying all, is beyond human cognition at its center but manifests in natural rhythms on its periphery (Kohn, 2001).

The name for this rhythm in Daoism, and in all of Chinese culture, is yin and yang. The words themselves refer to the shady side of a hill and the sunny side of a hill respectively. The shady and sunny sides of the hill are always provisional. The cycle begins again in a continuous process of arising and decaying. From this basic pattern two important points emerge. The first is that everything in the cosmos is constantly transforming itself. The second is that opposites in the world are complimentary. Daoism rejects a conflict dualism rooted in absolute distinctions between good and evil, heaven and hell, health and illness, ability and disability. Nothing is purely matter or spirit, good or evil, day or night, yin or yang. All things are flowing in the midst of everything else. Summer and winter, male and female, stability and change are all an expression of the underlying yin and yang in eternal interplay. When one fully internalizes this realization, it becomes clear that the goal towards which human beings should strive is complementary harmony rather than the absolute victory of one conflicting perspective over another, since there are no unchanging absolutes. The yin/yang symbol represents and affirms the holding together of contrasts in a balanced synthesis, the integrating of divergence into a synthetic whole (Smith, 77-90).

In Daoism, the pre-eminent space wherein balance and harmony operate is the human body in its interaction with the natural environment. The body forms an integral part of a body-mind-cosmos continuum that cannot be separated and is seen as one (Kohn, 2007). The underlying potency at the center of this continuum is the dao. Human health and vitality have to do with the whole of one's body, the mental, the emotional, the physical, the spiritual and the environmental are viewed synthetically, in constant interaction, one is not given priority over the other. The body is understood as a system of vital energy that is the foundation for both physical and spiritual wellbeing. What many in the West call "matter" and "spirit' or "body" and "soul" are, in Daoist understanding, both organic functions of the energy systems of the human body (Yuasa, 1987).

The starting point for the Daoist view of the body is qi (pronounced chee). Qi is the concrete aspect of the dao, the material energy of the universe, the basic element of nature (Kohn, 2007). Qi is often translated as vital energy or breath and it is quite literally the stuff of life. If a Daoist were to come across the story of how the god of the Bible breathed life into Adam, she would say that the divine creator was transferring qi energy into him. In Daoism, however, qi is not bestowed by some almighty creator, but is simply the natural operation of the universe, the dynamic pattern of yin and yang, expansion and contraction, the rhythm of the dao. The dao has no special relationship with humanity and does not bless or punish humanity. The dao abides in all things that exist, from rocks to bananas, imbuing each with a unique manifestation of its energy or qi. When qi is flowing in and out then we have life; when qi stops moving then we have death. Flexibility, movement, adaptation and transformation are thus critical to maintaining a harmonious and healthy life.

One way of explaining the dao energy flow is to imagine qi as a string. Thus a stimulus in one area produces a correlative resonance is all other areas just as plucking a guitar string sets off harmonic vibrations through the wood and all the other strings. Musical harmony exists in the midst of chaotic vibrations and flux. All interactions, all energy, all existence is always evolving into a natural state of chaotic harmony and balance.

Daoism, as incompletely described above, seeks a way of balance in the midst of continuous process. Flexibility is an important Daoist virtue because of the recognition that dynamic balance is not reducible to static concepts, models or definitions. "Dao that may be daoed is not enduring Dao;/ Name that may be named is not enduring Name" (DDJ, 1).1 All human attempts to explain the Dao are misleading and all efforts to categorize human health and vitality into neat medical distinctions and arbitrary social or religious definitions are incomplete. This basic Daoist understanding has important implications for disability studies as outlined in the following sections.

Some Typical Models of Disability

One reason that disability studies are so rich and interesting is because "disability," like the dao, defies definition. There are porous boundaries between disability and apparent health. More significant, disability cuts across all races, classes, genders, ethnicities, nationalities, and generations because it can potentially happen to anyone at any time due to an accident or a degenerative disease of the limbs, ears, eyes, or nervous system (Wendell, 11-33). In 2000, it was estimated that some 64 million or twenty percent of Americans have one or more physical or intellectual disabilities or chronic illnesses and that number is increasing as the population ages (Disability Statistics Center, Davis, 2002). This makes people with disabilities the largest and most diverse minority group in the United States. There is simply no coherent way to accurately define or categorize this large amorphous group.

In spite of this vast diversity, efforts to define those with disabilities abound. Four models that are used to categorize people with disabilities are highlighted. First, the most basic and simplistic disability paradigm reflects an impairment or deficit model. In this worldview of disability it is the physical or intellectual impairment; the blindness, deafness, paralysis or chronic illness that differentiates disabled people from others who are thought to have more able or whole bodies. There tends to be a dualistic distinction that creates a pseudo sense of separation and isolation, rather than the integration of diverse human embodiments into a complementary whole (Tremain, 2002).

Second, medical models of disability also emphasize deficits or impairments but stress a restitution narrative focusing on diagnosis, treatment and cure. It is defined by a progressive sequence involving distinct phases: illness, treatment, and recovery (Longmore and Umansky, 2001, Garland-Thomson, 2005, Reynolds, 2008). This narrative does not work well for people with chronic disabling conditions because it tends to isolate people and sets up unrealistic expectations of recovery. An overemphasis on "discovering a cure" reinforces the conflict dualism of the deficit model. A person is not whole, not really able, unless one is "cured." This model does not address ongoing issues of healing and renewal in everyday life (Goering, 2002). Health and harmony are not necessarily associated with the absence of disability. Indeed, such thinking implies that people with chronic disabilities might never experience healthy and holistic lives at all.

In contrast to the restitution narrative favored by medical discourse, Arthur Frank (1995) advocates for a quest narrative that views illness and disability as part of a person's life journey and as an opportunity for ongoing moral, physical and spiritual cultivation. A central question in the quest narrative is: What does physical, mental, and spiritual healing mean when cure is unlikely? A chronic condition requires perpetual healing actively constructed by the person moment to moment, day to day (Charmaz, 1991). This type of dynamic harmony and balance, viewed as a provisional and ongoing process, fits in well with the brief summary of Daoism presented above.

Third, religious models of disability tend to associate chronic impairment or deficit with individual spiritual deficiency. There is a persistent insinuation that chronically disabling conditions somehow involve merited suffering (result of sin or lesson to learn) and well-meaning people from multiple religious traditions often struggle to offer religious explanations and religious solutions to the "problem" (Schumm and Stoltzfus, 2007, Reynolds, 2008, Simundson, 2001, Koosed and Schumm, 2005). Religious models tend to mimic the restitution narrative associated with medical models of disability, where religious explanations and solutions replace medical explanations and solutions. If the restitution narrative is granted a religious legitimacy, then people may feel that they are spiritually defective because of the physical or intellectual difficulty that they experience. Restitution narratives, whether medical or religious, do not fit well with people who struggle with chronic conditions who seek not a resolution but a way of balance in the midst of transforming process.

In contrast to the three models mentioned above, the social model of disability tends to gloss over impairment as just another "natural' form of embodiment and focuses on disability as an oppressive social and historical construct. Many in the disabled population argue that social attitudes, prejudice, paternalism, an inaccessible environment, economic hardships and excessive individualism often pose greater difficulties than the actual condition although this is certainly not always the case (Linton, 1998; Wendell, 1996, Davis, 2002, Longmore and Umansky, 2001, Garland-Thomson, 2005). Demeaning ideas associated with disability are everywhere. For example, consider such everyday expressions such as "a crippled or paralyzed economy," "blind obedience/rage," "that's so lame," or "his suggestion fell on deaf ears" (Wendell, 77-88). In addition, freak shows, medical experimentation, and high rates of sexual assault upon persons with intellectual disabilities are all part of the socio-cultural fabric of disability in the United States (Shapiro, 1994).

The social model helps to challenge trivializing representations of disability and exposes concrete historical oppression. However, Alexa Schriempf (2001), and others (Morris, 1991) critique the social model for deemphasizing impairment: "The social model, in focusing on the social construction of disability, has amputated disabled (especially women's) bodies from their impairments and their biological and social needs" (Schriempf, 60). Even when taking into account that disability evades easy definition, the fact remains that, in many medical, legal and personal situations deafness, blindness, or paralysis fits the context as a partial descriptive account. A dualistic contrast between nature and culture or body and mind may not be the best way to discuss the multiplicity of disability; the integrating of distinction into a synthetic whole.

Disability and Daoism: Beyond Categories

Just like women, people of color, and sexual minorities, many with disabilities have come to equate breaking free of social and medical categories as a form of liberation and a way to challenge historically contingent ideas of normality. Daoism offers several routes or paths for discovering liberation and breaking free from oppressive and limiting social and medical categories. Daoism suggests that arbitrary models or definitions are always incomplete and represent a society dominated by "cunning intellect" or "artificial interference" (DDJ, 3, 57, 58, 65). A narrow calculating approach to social organization is compared to a person who "is self-pretentious . . . self-important," and hence constitutes "leftovers and cancerous growths" (DDJ, 24). Dispositions marked by control and excessive interference may be peeled away by means of "daily diminution" (DDJ, 48). The yin/yang symbol represents multiplicity and unity in the midst of continuous process where harmony is constantly regenerated, there is not intention to "claim mastery" (DDJ, 2, 10), and nothing is purely matter or spirit, abled or disabled. Daoism invites a culture to integrate disability naturally, even harmoniously, into its understanding of humanity without having to control it, cure it or categorize it. Daoism might help illustrate many forms of human expression and embodiment as aspects of a single, dynamic way.

To counter "cunning intellect" and "artificial interference" Sandra Wawrytko (2005) suggests several Daoist realignments: "It's not what you think that matters but what you unthink. It's not what you do that matters but what you undo"(90). "Unthinking" and "undoing" narrow models and dysfunctional dualisms are illustrated as "an infant who has yet to smile" (DDJ 20). Wawrytko emphasizes the importance of Daoist flexibility and adaptability by highlighting the cognitive ability of infants to learn more quickly than adults because their brains are less molded by taken-for-granted categories and less cluttered by conventional patterns of thought. "The Daoist sage has been able to wring the saturated sponge dry again…, has swept it clean of the accumulated dust and debris of imposed conditioning. Hence, the Sage is able to respond to reality co-creatively"(94). "Unthinking" and "undoing" the dysfunctions of cultural conditioning helps to stimulate innovative spontaneity often symbolized in Daoism by the fluid images of water flowing around, beneath and above obstacles. "Dao in the world is like a river flowing home to the sea" (DDJ, 32). Water is flexible and unthreatened by adaptation and change (Seong-Won). Daoism invites our minds, bodies and communities to become flexible and adaptable like flowing waters or smiling infants.

The integration of disability as a natural and normal element of social awareness enables us to "unthink" old models and destabilizes inflexible categories. Increasingly, disability theorists tend to argue against essentializing disability and for recognizing disability as fluid and heterogeneous. Rsoemarie Garland-Thompson (1994) articulates this well when she writes "Disability can be painful, comfortable, familiar, alienating, bonding, isolating, challenging, infuriating, or ordinary" (586). This variability and contingency raises the familiar Daoist issue of whether one is ever able to speak with any assurance about a social or medical category. The multiplicities of disability are increasingly moving disability theorists and activists to organize for a world that is more accessible to all, rather than for generalized assertions about isolated individuals or some generalized disabled group identity (Tremain, 2002; Davis, 2002).

Daoism, Irony, and Disability

Another route which Daoism offers for unthinking disability is that of irony. It is better to be small, humble, weak, and imperfect than to stand out from all the rest for those who "stand on tip toe" are not well balanced (DDJ, 24). Daoism uses irony as a tool for negotiating the paradox of human endeavor — for finding a way to cherish living in the midst of ambiguity and difficulty regardless of imposed cultural values and labels.

Two stories from the Zhuang Zi exemplify Daoist irony. The first story involves a carpenter dreaming about a giant crooked oak tree that he earlier deemed useless for making doors, coffins and vessels.

After Carpenter Shih had returned home, the oak tree appeared to him in a dream and said, "What are you comparing me with? Are you comparing me with those useful trees? The cherry apple, the pear, the orange, the citron, the rest of those fructiferous trees and shrubs — as soon as their fruit is ripe, they are torn apart and subject to abuse. Their big limbs are broken off, their little limbs are yanked around. Their utility makes life miserable for them, and so they don't get to finish out the years Heaven gave them, but are cut off in mid-journey. They bring it on themselves — the pulling and tearing of the common mob. And it's the same way with all other things (Watson, 1996, 60).

It is the conventional uselessness of the oak tree that enables it to grow old and that protects it from being subject to the utility of the "common mob." Irony is expressed in the story by demonstrating the "use of the useless' (63), that nonconformity to conventional standards of judgment can empower freedom and flourishing. The story also demonstrates how human patterns of thought affect the natural world.

A second story highlights the connection between crippled bodies and conventional expectations.

There's Crippled Shu — chin stuck down in the navel, shoulders up above his head, pigtail pointing at the sky, his five organs on the top, his two thighs pressing his ribs. By sewing and washing, he gets enough to fill his mouth; by handling a winnow and sifting out the good grain, he makes enough to feed ten people. When the authorities call out the troops, he stands in the crowd waving good-by; when they get up a big work party, they pass him over because he's a chronic invalid. And when they are doling out grain to the ailing, he gets three big measures and ten bundles of firewood. With a crippled body, he's still able to look after himself and finish out the years Heaven gave him. How much better, then, if he had crippled virtue (Watson, 1996, 62).

This story expresses irony by highlighting human ability in the midst of chronic disability and by demonstrating the potential usefulness of nonconforming bodies in raising questions about conventional values and taken-for-granted pattern of thinking and acting.

Disability artists and activists also use irony to unsettle the implied superiority of ablism, to call attention to inflexible categories and to highlight ability in the midst of ambiguity and contingency. For example, Ruthann Robinson (1999), a legal theorist, expresses irony in the poem, "Literary Ambition":

to write a poem

spare, clear, and lyrically

honest

unabashedly autobiographical

to write a poem

that begins: Twenty

No, better, Thirty

Years ago, they pronounced me incurable

to write a poem

without closure (286)

Robinson invites the reader to imagine and explore what it means to live with a medical diagnosis of "incurable," with knowing there is no final "closure." Robinson expresses irony by articulating her precarious context poetically, living and creating in a culture that often equates disability with inability. Irony is one way to cultivate harmony in the midst of situations that resist resolution while at the same time destabilizing the restitution narratives favored by medical discourse.

Perhaps one of the most challenging aspects of disability is to convince non-disabled people that even when it involves pain and hardship, disability is not always a tragedy or burden but in fact provides much of value. For example, as physical and/or mental outsiders, disabled people offer a valuable critique of a world that non-disabled people take for granted. Susan Wendell writes, "When people cannot ground their self-worth in their conformity to cultural bodily ideals or social expectations of performance, the exact nature of those ideals and expectations and their pervasive unquestioning acceptance becomes much clearer" (69).

In her eloquent memoir, My Body Politic: A Memoir, Simi Linton (2006) boldly articulates how she grew to appreciate the value of her disability, while at the same time learning to negotiate the new physical, mental, and societal challenges it inevitably presented her. Linton writes:

For it wasn't until some time after I sustained the injury to my spine that immobilized my legs, after I learned to use a wheelchair, and after I had reckoned with myself and the world for a while in this new state — it wasn't until then that I gained the vantage point of the atypical, the out-of-step, the underfooted (3).

Linton's story generates irony through the new ability that living in a disabled body brings in terms of "unlearning" and "undoing" typical patterns of thinking. Her words also highlight the fluidity and contingency of all human identity claims and the effort to find balance while recognizing the mobility of all vantage points. Irony offers a bridge to help navigate the turbulent terrain of striving for a transformed world in which things are not arranged in neat systems and categories; a world where challenging conventional ways of prioritizing people and things is quite useful and valuable. Daoism has long used irony as a tool for negotiating the paradox, dependency and fragility of human endeavor. Those living with and writing about disability also use irony as a means to destabilize the implied superiority of abilism, to recognize opportunity in the midst of difficulty, and to free people from the illusion of self-sufficiency.

Daoism, Interdependence and Disability

Daoism tends to view humans existing as a unified body, mind, and spirit that are part of a universal and interdependent scheme. Ancient Chinese thinkers developed correlative thinking as a way of mapping the patterns of the dao to help explain the connections between three important elements of our interdependent existence: the body, the communal/environmental and the cosmos (Kohn, 2004; Miller, 53-73). It is critical that the personal body, the communal/environmental body, and the heavenly bodies are functioning harmoniously; with resonance and synchronicity. The Doaist correlative mind enables the individual to perceive and process multiple levels of changing reality in order to cultivate dynamic balance in the midst of multiple interdependent conditioning. One of these multiple layers involves the interaction of energy or qi.

The basic physiological principle at work in traditional Chinese medicine is the continuous exchange of vital energy or qi according to the process of yin and yang, expanding and contracting, activating and storing. As the lungs inhale and exhale and the heart contracts and pumbs, so also qi pulsates through the body. Liva Kohn (2007) writes, "There is only one qi, just as there is only one dao. But it, too, appears on different levels of subtlety and in different modes" (105). Daoist cosmology correlates the energy flow in human bodies with the basic modalities of the cosmos; the phases of the moon, the orbits of the stars, the changing of the seasons, the beating of the heart. In this more cosmic view of qi, the energy that gives life to our bodies is nothing less than the basic energy of the universe (Kohn, 2004). The interrelationship between person, environment, and universe make them mutually conditioned and interdependent.

An important way that disability studies enhance the exploration of interdependent relational dynamics is by recognizing its field as interdisciplinary and multidimensional. Disability studies invite scholars to think about disability not as an isolated, individual medical pathology but instead to synthesize and correlate the dynamic connections between multiple fields of analysis including historical, religious, social, medical, legal, psychological, economic and other perspectives. Disability scholarship also embraces interdependence by its critical appraisal of the dominant individualist narrative so prevalent in United States history (Linton, 1998). For example, capitalistic economic systems often are predicated on able-bodied values of self-mastery, independence, control and strength. Douglas Baynton (2001) demonstrates how in the history of the United States opponents to suffragists, immigration and abolitionists all used disability to discredit undesirable group's claims to citizenship, while women, African Americans, and immigrants bristled at being associated with disability. Increasingly, disabled people "declare that they prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community" (Longmore, quoted in Fries, 9). Although it is easy to come up with situations in which someone with a disability might need support or assistance, interdependence and human community suggests more complex relational and social dynamics.

Rebecca Green (2006), a public health nurse who lives with Crohn's Disease, suggests that the physical vulnerability associated with chronic illness helps to free people from the illusion of self-sufficiency and leads to an increased availability to accept comfort and care from others. By recognizing their own vulnerability and need to receive comfort from others, the chronically ill and disabled also become aware of the importance of responding to others with care and flexibility. The giving and receiving of care is a complementary process, not a one way street. Living with a disability or relating to someone with a disability clarifies how interrelated our lives really are, how much we physically, socially and spiritually need each other. Human beings are never free from vulnerability and a need for mutual support. The quest for individual cure, so emphasized in the medical model, makes little sense in the context of interdependence.

In her article "The Blind Man's Harley: White Canes and Gender Identity in America," Catherine Kudlick (2005) discusses her experience at what she dubs "blind boot camp," and provides an example of the tension between the seemingly competing desires for interdependence and independence within herself and within the blind community. While not the primary focus of her article, Kudlick notes a debate in the blind community surrounding the choice of mobility aids. There are those who argue that white cane use is far superior to guide dogs because the cane promotes total independence and autonomy, while using a guide dog still requires dependence on another being. There is an implicit acceptance of the value of rugged individualism on the part of those who argue for the superiority of cane use which also dismisses the potential advantages and benefits of learning how to be interdependent with not only other people, but also with other beings in the world.

Darla Schumm reflects on both the paradox and irony that many people who live with disabilities experience in trying to establish balance between excessive dependence and excessive independence. Darla is legally blind and the co-author of this essay:

For years I stubbornly resisted using any mobility aids. I have some limited sight and was able to travel relatively safely on my own without a cane or dog. I saw this ability as a mark of my self sufficiency and independence. It was not until I was preparing to get married that I realized that my stubborn independence was becoming an obstacle to the things I really craved: self determination, interdependence, personal connection, and human community (as described by Lawnmower above). Amidst sobs, my fiancé begged me to consider using a mobility aid because he feared for my safety when I traveled alone and negotiated busy intersections and crowded streets without any assistance. I eventually got a guide dog and what I have realized is that my "dependence" on my guide, Papaya, not only allows me to provide comfort and care to my husband by giving him peace of mind, but allows me to be even more independent (and it goes without saying, safe) in my mobility. The great irony is that while there are those who would negatively or condescendingly describe my use of a guide dog as just another form of dependence, it is my interdependence with Papaya which keeps me safe and affords me a new found level of independence. Additionally, Papaya has taught me much about the rewards of reciprocal care. She takes care of me on a daily basis by keeping me safe, and I in turn take care of her on a daily basis by providing her shelter, food, affection, and love.

The scenario highlighted above suggests that the experience of disability can open new relational perspectives that question cultural narratives grounded in excessive notions of individualism and independence. Paradoxically, a culture that prizes individual achievement tends to idealize individuals who overcome a disabling condition and achieve a high level of self-sufficiency and independence. Consequently, "super crip" becomes an internalized role for some with disabilities:

By acting as if we have no needs, we may perpetuate a "super-crip" image — disabled people can do anything we want if we only try hard enough. We may exhaust ourselves trying and come to believe that we are better than other disabled people who have not accomplished as much (Woronow, 1985, 174).

Darla Schumm addresses the "super-crip" dynamic by reflecting on her own experience and internal struggle with the label:

I have always struggled with the idea of the "super-crip." To look at me, you would not necessarily know that I had any disability. Since I did not use mobility aids until I was in my mid thirties, for most of my life I had no external markers which identified me as disabled. Growing up my parents, teachers, and other important adults in my life always told me I could do whatever I wanted to do and they all encouraged me to take risks and set my goals high; consequently, I have accomplished quite a bit academically and professionally. It was not until after I had received my Ph.D. - which was one of my life long goals and one of my greatest challenges as a person with a disability - that I began (and it continues to be an ongoing process) to deconstruct how I had internalized a "super-crip" identity. The "super-crip" label is certainly pinned on many of us with disabilities by others, but it is the internalization of this label that I find most troubling. I have tried to "pass" as non-disabled, felt superior to other blind people who have not achieved as much "success" as I have by societal standards, and lived with a fair amount of anxiety and exhaustion doing these things. As I began to become more comfortable with my disability and with myself as a person with a disability, my judging of both others and myself decreased. Reading, researching, writing, and talking more openly about disability has enabled me to more fully incorporate my disability as just one of many interesting (and some not so interesting) aspects of who I am. I am learning to break free of models and labels and see disability as simply one form of human variation, no better or worse, no more or less embarrassing, or no more or less worthy of praise and admiration than any other form of human variation. By attempting to shed my internalization as a "super-crip," I have discovered new and deeper understandings of my own sense of self, as well as of what it means to be a part of human communities — with my disabled and non-disabled friends alike.

Darla's comments highlight the paradoxical tensions that many with disabilities experience as they try to navigate the delicate balance between independence and interdependence. Those with hidden disabilities may face particular difficulties in our fast-paced, individualist society, especially if they are living with a less well-known chronic condition such as fibromyalgia or lupus. In many cases people are torn between trying to keep up without accommodation, passing as non-disabled, or "coming out" and having to struggle for support without pity, recognition without paternalism. Exploring these tensions helps in the development of a harmonious approach that challenges exaggerated self-reliance while recognizing that independence and interdependence are complementary, not flatly oppositional.

Conclusion

Daoism seeks dynamic balance in the midst of constant change. All efforts to categorize human health and vitality into organized medical distinctions and constructed social models are fluid and incomplete. A Daoist worldview helps to destabilize typical categories used for defining chronic disability enabling us to think more creatively and holistically about the complicating role of disability in human experience. Daoism illustrates that many forms of human embodiment are aspects of a single, dynamic way and invites the integration of disability into the understanding of human life without necessitating categorization, definition, isolation or cure.

Disability theorists, activists, and artists are increasingly trying to organize for a more interdependent human community, rather than for generalized assertions about a particular group identity. In his essay, "The End of Identity Politics and the Beginning of Dismodernism," Lennard Davis (2002) argues for a "clouding of the issue of disability identity" and calls for a "new ethics of the body" which he names a "dismodernist ethics" (27). Davis' dismodernist ethics seeks to destabilize heretofore standard models of identity politics and constructions of the body by envisioning new ways of constructing community. Davis writes:

In a dismodernist mode, the ideal is not a hypostatization of the normal (that is, dominant) subject, but aims to create a new category based on the partial, incomplete subject whose realization is not autonomy and independence but dependency and interdependence (29).

Davis' position fits nicely with the long held Daoist suggestion that harmony is not affiliated with a fixed point or an absolute perspective but rather involves a fluid and dynamic balance, perpetually regenerated by the ongoing integration of a body-community-cosmos continuum. Those who live with chronic illness or disability often comprehend intuitively that harmony exists in the midst of multiple layers of perpetual process as people move within an interdependent flow of events that resist isolated control, rigid categorization, or medical resolution.

A final example from Darla's life as a parent illustrates the importance of Daoist flexibility and adaptability by highlighting a recent exchange with her young son. Darla observes:

My two-and-a-half year old son Henry demonstrates the innovative spontaneity of a child's response to my disability. Henry has grown up with a Mommy who is virtually blind. At a very young age, Henry understood that Mommy navigated the world differently than the other people in his life. On a recent afternoon we were preparing to leave the house and go on an outing. As we headed for the door, Henry looked up at me and asked: "Mommy, Are you going to drive?" I said "no," at which point Henry very matter-of-factly stated, "You can't see, you would crash into other cars." What was most striking to me with this exchange was not that my two year old understood at some level that I can't see, but that his observation was lacking any type of judgment or categorization about what it means to be blind. For Henry my blindness is as natural and normal as the fact that when it is cold outside he must wear a coat. I am not lacking anything in Henry's mind; I simply can't see and therefore do things differently than the people he knows who can see. In his own way, Henry has learned that I am blind; what he has not yet learned are the societal prejudices, attitudes, or stereotypes about what it means to be blind or disabled. Through the wisdom of a child, Henry embodies one of the contributions that Daoism can make to disability studies: The less cluttered our minds are by the imposed conditioning of conventional standards of judgment regarding disability, the more flexible we are in responding to both the beauty and challenge of living with chronic disability.

Daoism maps a way to destabilize old models and definitions while at the same time making fluid claims for balance and harmony in the midst of the unresolved ambiguity associated with chronic disability. The aim of this essay has not been to offer an alternative model based on Daoism, but rather to provide some cracks in the very structure of how we tend to think about disability. Daoism helps us to understand that nonconformity to conventional attitudes and judgments can empower freedom and flourishing. Indeed, Daoist interdependence, irony, transformation and synthesis help to map a world where harmony and balance are found in the midst of the chaos, rewards, insights, challenges, and beauty of all bodies — disabled and non-disabled alike.

Works Cited

  • Baynton, D. (2001). Disability and the justification of inequality in American history. In P. Longmore and L. Umansky eds., The new disability history: American perspectives. New York: Press, 33-57.
  • Charmaz, K. (1991). Good days, bad days: The Self in chronic illness and in time. New Brunswick, NJ: Rutgers University Press.
  • Davis, L. (2002). Bending over backwards: Disability, dismodernism & other difficult positions. New York and London: New York University Press.
  • Disability Statistics Center, University of California San Francisco, http://dsc.ucsf.edu/UCSR/pub.taf?.
  • Frank, A. (1995). The wounded story teller: Body, illness, and ethics. Chicago: University of Chicago Press.
  • Fries, K. (1997). Staring back: The disability experience from the inside out. New York: Plume Books.
  • Garland-Thomson, R. (2005) Feminist disability studies. Signs: Journal of women in culture and society 30(2). Pp 1558-87.
  • Garland-Thompson, R. (1994). Redrawing the boundaries of feminist disability studies, Feminist studies, 20: 586.
  • Goering. S. (2002). Beyond the medical model? Disability, formal justice, and the exception for the profoundly impaired. Kennedy institute of ethics journal, 12(4), 373-388.
  • Graham, A. (1982). Chuang-tzu: Textual notes to a partial translation. London: University of London.
  • Green, R. (2006). Unpublished Interviews: 8-30-06 and 9-4-06.
  • Kohn, L. (2001). Daoism and Chinese culture. Cambridge, Mass.: Three Pines Press.
  • Kohn, L. (2004). Cosmos and community: The ethical dimension of Daoism. Cambridge, Mass.: Three Pines Press.
  • Kohn, L. (2007). Daoyin: Chinese healing exercises. Asian medicine, 3, 103-129.
  • Koosed, J. L., and Schumm, D. (2005). Out of the darkness: Examining the rhetoric of blindness in the gospel of John. Disability studies quarterly 25(1).
  • Kudlick. C. (2005). The blind man's harley: White canes and gender identity in America. Signs: Journal of women in culture and society, 30(2), 1590-1606.
  • LarFargue, M. (1992). The Tao of the tao-te-ching. Albany: State University of New York Press.
  • Linton. S. (2006). My body politic: A memoir. Ann Arbor: The University of Michigan Press.
  • Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.
  • Longmore, P. and Umansky, L. (eds). (2001). The new disability history: American perspectives. New York and London: New York University Press.
  • Mair, V. (1983). Experimental essays on Chuang-tzu. Honolulu: University of Hawaii Press.
  • Miles, M. (2002). Disability on a different model: Glimpses of an Asian heritage. Journal of religion, disability & health 6(3), 89-108.
  • Miller, J. (2003). Daoism: A short induction. Oxford: Oneworld.
  • Morris, J. (1991). Pride against prejudice: Transforming attitudes to disability. London: The Women's Press, Ltd.
  • Reynolds, T. (2008). Vulnerable communion: A theology of disability and hospitality. Grand Rapids, MI: Brazos Press.
  • Schriempf, A. (2001). (Re)fusing the amputated body: An interactionist bridge between feminism and disability. Hypatia 16, 56-72.
  • Schumm. D. & Stoltzfus. M. (2007). Chronic illness and disability: Narratives of suffering and healing in Buddhism and Christianity. Journal of religion, disability & health, 11(3), 5-21.
  • Schwartz, B. (1998). The worldview of the Tao-te-ching. In Lao-tzu and the Tao-to-ching, edited by Livia Kohn and Michael LaFargue, 189-210. Albany: State University of New York Press.
  • Seong-Won, P. (2005). Economy of water: A spiritual basis for an alternative economy. Ecumenical review, 57(2), 171-178.
  • Shapiro, J. (1994). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.
  • Simundson, D. J. (2001). Faith under fire: How the bible speaks to us in times of suffering. Academic Renewal Press.
  • Stewart, J. (1987). From the bodies memory. In F. Howe and M. Saxton, (eds.), With wings: An anthology of literature by and about women with disabilities, New York: Feminist Press.
  • Tremain, S. (2002). On the subject of impairment. In M. Corker and T. Shakespeare, eds., Disability/postmodernity: Embodying disability theory, London: Continuum.
  • Watson, B. (1968). The complete works of Chuang-tzu. New York: Columbia University Press.
  • Watson, B. (1996). Chuang Tzu: basic writings. New York: Columbia University Press.
  • Wawrytko, S. (2005). The viability (dao) and virtuosity (de) of Daoism ecology: Reversion (fu) as renewal. Journal of Chinese philosophy, 32(1), 89-203.
  • Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. New York: Routledge.
  • Woronow, N. (1985). A see-by-logic life, in With the power of each breath: A disabled women's anthology, eds. Susan Brown, Debra Connors and Nancy Stern, Pittsburgh: Cleis Press.
  • Yuasa, Y. (1987). The body: Toward an eastern mind-body theory. New York: State University of New York Press.

Endnotes

  1. All quotations from the Dao De Jing have been translated by Charles Wei-hsun Fu and Sandra A. Wawrytko, indicated by DDJ and the appropriate chapter number.


    Return to Text
Return to Top of Page


Copyright (c) 2010 Michael Stoltzfus, Darla Schumm



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Terri Fizer.

ISSN: 2159-8371 (Online); 1041-5718 (Print)