University of Maine
We are particularly delighted to have been invited to guest edit this special issue of RDS. The issue represents an important milestone in the development of progressive, integrative thinking that is critical for disability studies to advance its value to higher education and to informing human rights in the complex global communities to which disability studies speaks.
Over the past 25 years, we have been passionate and committed to disability studies both as scholars and individuals with atypical bodies. Thus, watching this potent field shatter into fragments has been somewhat painful. In the early 1990s, we therefore set our own scholarly agenda to develop, test and teach theory, which had the potential of provoking meaningful and purposive dialog among thinkers and actors that at least on the surface seemed to contradict one another.
We began our theoretical journey by conceptualizing explanatory legitimacy theory, which was published in numerous articles and then in book format in 2004. Explanatory Legitimacy Theory remains useful in 2008 as it makes the distinctions among descriptive, explanatory, and the axiological or the legitimacy dimensions of the categorization of human diversity and identifies the relationships among these elements. Thus, using this lens, disability as a category is comprised of the three interactive elements: description, explanation, and legitimacy. And it is only at the point of legitimacy, where the judgment is made about who is disabled and what responses should be proffered for category members.
This theory allows for the presence of multiple explanations, thereby creating a fertile space in which diverse explanations for atypical human experience can mingle and serve many purposes.
When the planners of the 2008 PacRim conference made the commitment to a disability studies strand, this watershed event affirmed what we have been thinking over these past 25 years; that there is an important role for pluralistic views of disability and that these different views could only strengthen theory, research and practice to promote inclusive global communities and human rights. The articles in this issue illuminate the goal of the visionary PacRim planners, the importance of cross-fertilization and synthesis. Each of the articles takes on different aspects of disability and uses diverse theoretical lenses through which to do so.
Jarman’s work discusses an approach to disability studies education through seminal ethical analytic models. Within this curriculum, students encounter and unpack the meaning of rights, personhood, respect, integration, dependence and interdependence. Moreover, Jarman embeds the study of disability within historical and current chronologies as she discusses how these contexts enrich student thinking.
Stevens’ paper indicts policy and culture as influential in disability sexuality. She uses cultural policy thinking to analyze the diverse actions that have been undertaken by disabled individuals to express sexuality in the absence of this essential part of life in disability policy. She asserts that limited conversation about disability sexuality locates sexual practices in which disabled bodies engage in the realm of the deviant and challenges disability studies to be inclusive of sexuality.
Mitchell takes on disability and media. He discusses how undergraduate students use media to analyze and counter disability stereotype in multiple venues. In his article, he provides techniques and materials for this important area of teaching.
Finally, DePoy and Gilson conclude the special issue by examining the diverse traditions that had fractured the field, and provide an integrative explanatory model within explanatory legitimacy theory, juncture/disjuncture, through which disparate disciplines and purposes can increase the fit of environments and individuals. The article concludes with the call for locating disability within the larger discourses of diversity and social justice and illustrates their approach through systematic thinking and action techniques.
We anticipate that the model that the 2008 PacRim planners innovated will provide an example to other conference and scholarly venues to follow. Their model has the potential to become the genesis of new and productive collaboration among disparate disciplines and masters that will strengthen the field of disability studies and its effect on global inclusion.
***Editor's Note: The Call for Papers for PacRim 2009 is now posted online at www.pacrim.hawaii.edu.
Disability Studies Ethics: Theoretical Approaches for the Undergraduate Classroom
Michelle Jarman, Ph.D.
Wyoming Institute for Disabilities, University of Wyoming
Abstract: By challenging disability prejudice and advocating for people with disabilities in crucial bioethical debates, disability rights activists and scholars have been reformulating ethical discourse. This essay suggests pedagogical strategies for introducing undergraduates to an ethics of disability studies, and integrating disability perspectives into broader questions of social justice.
Key Words: ethics, disability studies, social justice
***Editor's Note: This article was anonymously peer reviewed.
Disability studies scholars and rights activists, in their shared commitment to challenge stigmas around physical and cognitive impairments and advocate for full integration, self-determination, and maximum civic participation of disabled people, often find themselves engaged in reconfiguring ethical theory, debate, and action. At the heart of disability studies lies an ideal of social participation for all people, to the fullest extent possible, regardless of impairment diagnosis. This ideal positions disabled and nondisabled people as moral and legal equals, and does not formulate citizenship or personhood standards around rationality, independence, or self-sufficiency, as many ethical and social justice theories have done traditionally. In challenging physical and cognitive norms—as these have been defined and enforced—as well as historical exclusions of people with disabilities, an ethics of disability demands an expansion of long-standing conceptualizations of human embodiment and conscious engagement.
Discussing ethics from a disability perspective becomes all the more urgent and complex as we look at some of the most polarizing debates about human life, such as selective abortion, euthanasia, and the potential eugenic outcomes of prenatal testing and genetic technological advances. As many scholars in the field have pointed out, much of the medical and popular media representations of these debates have privileged cure and eradication of disability over attitudinal change and greater efforts to integrate and support the access needs of disabled people (Wendell, 1996; Parens & Asch, 2000; Glover, 2006).
At the University of Wyoming, as faculty members in the newly established undergraduate minor in disability studiesi considered the layered ethical conversations that would inevitably arise within undergraduate courses, we decided to integrate ethical components across the core courses and popular electives of the curriculumii. This essay introduces some of the pedagogical and theoretical approaches we are implementing by looking closely at some of the disability ethics content in three distinct courses. The first, Introduction to Disability Studies, is a required survey course, where students are encouraged to extrapolate the driving ethical commitments of disability studies within a social justice context. The second elective course, Women with Disabilities, focuses on feminist approaches and multiple perspectives of disabled women. This course provides a unique location to explore care ethics and to introduce a few of the productive complications disability studies has introduced to feminist theories. The final required course, Supports and Services, provides students with opportunities to meet service professionals, disabled clients and activists, and policy experts who provide first-hand accounts of how local and national support systems operate. In addition, students are exposed to broader theories of human rights, social justice, and vulnerability, and are encouraged to use these critical lenses to analyze the ethical guidelines within their own fields or professions. The ultimate goal is to provide students in the minor with a comprehensive understanding of the principles animating disability studies, and with the tools for articulating and integrating these values into an active ethical practice in their professional lives—within and beyond academia.
Articulating an Ethics of Disability
As an interdisciplinary field of inquiry, disability studies draws upon many areas of scholarship to inform its ethical commitments. The introductory survey class reflects this diversity by encouraging students to identify and cull out from our course readings some of the foundational ethical principals informing disability studies. Drawing upon leading scholars and activists in the field, students investigate critiques of the medical and moral models, and explore the political salience of the British social model and the minority/civil rights model that has emerged in the United States. As the perspectives of disabled people are moved to the center, students come to realize how marginalized these voices are in mainstream public discourse, and how meanings of disability have been shaped by limiting cultural narratives built around individual tragedy, charity, and heroic overcoming.
From the outset, students are introduced to the ideals driving disability studies and disability rights, such as claims to full personhood and respect, maximum integration, and appreciation of dependencies and interdependencies. The importance of putting these ideals into practice are most salient as students are exposed to historical and contemporary exclusions of people with disabilities, the potentially oppressive power of medical authority, and the pervasive stereotypes that continue to cast disability as individual medical tragedy, moral punishment, or villainous attribute.
As students begin to unpack the medical model, they are often struck by the power of the concept of normal to stigmatize and exclude people with disabilities. Linton (1998) has explained this process in the following way: “The medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and significantly, as an individual burden and personal tragedy” (p. 11). Davis (1999) has elaborated further, pointing out that the very idea of normal, codified during the eugenics period, is relatively new. With the institutionalization of the bell curve in the early twentieth century, Davis has suggested, “The concept of normality…created an imperative to be normal” (p. 504) by drawing stark lines between so-called normal and abnormal bodies. Readings from such scholars push students to reevaluate their own assumptions about normalcy, and many uncover conceptual exclusions within their own thinking that become illuminating. The perspective shift from the medical to the social model, as well, is quite noticeable in the classroom. Wendell (1996) has captured the nature of this shift in The Rejected Body: "One of the most crucial factors in the deconstruction of disability is the change of perspective that causes us to look in the environment for both the source of the problem and the solutions” (p. 46). The invitation to look at specific environments allows students with and without disabilities to actively participate in locating barriers and suggesting ideas for more inclusive practices.
As we explore the nature of disability oppression and prejudice, students are also encouraged to approach the insights of disability studies as generative, and applicable to human experience more broadly. In this vein, we begin to focus on the ways that values produced by disability perspectives might enhance social theories, philosophical ideals, and cultural practices. In his classic essay on disability culture, Longmore (1995) has delineated the provocative nature of disability values:
“[P]eople with disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, nondisabled majority values. They 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 (p. 36).
In this formulation, Longmore has rightly drawn upon the experience of disabled people as an alternative “source of values and norms” (p. 36), and this provides an excellent starting point to discuss some of the major ethical traditions in philosophy, especially to investigate where the dominant assumptions critiqued above have originated, and how these theories continue to influence contemporary ideas and practices around disability.
While our foray into philosophy is admittedly superficial, students are introduced to key ethical theories and encouraged to think about concepts and exclusions that might affect people with disabilities. Initially, the class considers the differences between consequentialist (teleological) and nonconsequentialist (deontological) theories (Thiroux, 1998). Consequentialist theories such as egoism, and act and rule utilitarianism, share a focus upon consequences of actions, and determining rules or personal actions in order to bring about beneficial consequences. Nonconsequentialist theories, such as intuitionism, Kant’s duty ethics, and virtue ethics, differ in many ways but broadly share the assumption that human beings have an internal moral guide, or that they have the capability, through reason, to develop moral rules and abide by them. Such theories see ethics as a process of internal intuition or reflective learning. For the purposes of this paper, I’ll outline a few of the questions disability studies brings to the discussions of a representational theory in each category: utilitarianism and Kant’s duty ethics.
Utilitarianism takes as its guiding principle that everyone should act according to the greatest good for all concerned. In other words, moral action is determined by evaluating potential ramifications, and moral agents are obligated to choose the optimal act, or the one determined to provide the best consequences (Thiroux, 1998; Kagan, 1998). In practice, however, it is extremely difficult to predict the outcomes an action will have upon everyone involved. More important to disability studies, the ideal of the greatest good for greatest number often devolves into cost-benefit debates where majority interests are pursued at minority groups’ expense. The legacies of utilitarianism are evident in resource allocation debates in modern industrialized societies, in which providing civic access, medical support, and other resources to people with disabilities center around cost-benefit analyses. Such models inevitably position those most in need of supports as least beneficial to the social fabric—assumptions built upon medical authority, which correlates increased impairment levels with decreased quality of life—a euphemism for lesser human worth. These arbitrary judgments portray people with disabilities as tragic sufferers who should be pitied, not as potential contributors to cultural life—or the bottom line. As Wendell (1996) has argued, this limiting mindset continues to make it very difficult to allocate disability resources, “because most people still think of disability as a personal or family responsibility, and…because public aid to people with disabilities has long been characterized as pure charity, rather than as a social investment in ability and productivity” (p. 51). In effect, utilitarian and medical model assumptions inhere within social thought and political structures and function invisibly as natural practices.
In contrast, Kant’s duty ethics assumes that as people act from a sense of innate, rational duty, they will come to agree upon universal moral rules that will guide their actions—which, following such reasoning, will tend toward the good of everyone concerned. In this construct, moral decisions are determined through reason, and are assumed to be logically consistent (Furrow, 2006). In critique of Kant’s enduring influence, Kittay (2002) has pointed out that his model connects human value and human dignity to pure rationality and moral duty:
“The capacity that elevates humans to the status of moral agents, [Kant] thought, is the rationality by which we judge if we can universalize maxims we choose for our own actions. Rational agency, he maintained, not our mere species membership, gives us the dignity of moral beings” (p. 262).
This privileging of rational agency, which implies an individual subjectivity based upon independence and autonomy, inevitably excludes people with a variety of intellectual or communicative impairments. As we explore more modern theories of humanitarian ethics and social justice, students are encouraged to ask how definitions of personhood, citizenship, and moral agency continue to reflect such ableist assumptions.
In order to trace the enduring nature of how the human is conceived through reason and competence, we consider the work of Rawls (1971), arguably one of the most influential modern social philosophers. Moving outside the boundaries of consequences and internal morality, Rawls (1971) focused upon developing a comprehensive theory of social justice by outlining the principles that should govern political structures. His goal was to determine what kind of social contract everyone could agree upon, taking into account the vast differences people hold about how to live. After looking at the basics of his theory of social justice, we consider some of the problems his philosophical framework presents to disabled people. In his theory, Rawls (1971) defined the negotiating or acting parties as competent adults, thereby constructing a boundary that could be used to expel many people with cognitive, communicative, or other impairments. I borrow Nussbaum’s (2002) critique of Rawls (1980), to extend the discussion of philosophical exclusions. The following quote from Rawls (as cited in Nussbaum, 2002) illustrates to students the rational methods still used to justify exclusions of people with disabilities from social discourse, and by extension, society:
“So let’s add that all citizens are fully cooperating members of society over the course of a complete life. This means that everyone has sufficient intellectual powers to play a normal part in society, and no one suffers from unusual needs that are especially difficult to fulfill, for example, unusual and costly medical requirements. Of course, care for those with such requirements is a pressing practical question. But at this initial stage, the fundamental problem of social justice arises between those who are full and active and morally conscientious participants in society…Therefore, it is sensible to lay aside certain difficult complications. If we can work out a theory that covers the fundamental case, we can try to extend it to other cases later” (as cited in Nussbaum, 2002, p. 190).
As we consider this setting aside of so-called complications, we must ask how a theory of social justice can be built around the deliberate exclusion of people with dependencies. Also if such people are conceived of from the beginning as difficult and complicated, won’t their integration back into the social fabric be fraught with problems as well? As students consider these questions in conjunction with disability studies values and ethical frameworks, they begin to see how the social structures we have inherited are very much a product of these philosophical constructs.