Summery of two articles

Disability and Justice: A Pluralistic Account

A number of divergent conceptualizations of disability emerged in the twentieth century, including those of "the biomedical model," "disability as social construction," "disability as difference," and "disability as poten- tially universal experience." Proponents of the biomedical and social con- struction models have squared off against each other from seemingly in- compatible and highly polarized standpoints. Considered on their own, particular conceptualizations of disability do not have enough "space" for all "people with disabilities" and the multiple injustices that they face on a day-to-day basis in a modem world. However, an analysis of all four con- ceptualizations reveals that each has something of value to offer in the ex- ploration and handling of justice issues of relevance to disability.

In this paper, I briefly examine these four conceptualizations and iden- tify some of the strengthsllimitations of each as well as some of the ten- sions that exist between them. I argue that an optimal account of disability would benefit from consideration of a plurality of these and other concep- tual frameworks. I then suggest a number of pragmatic approaches to dis- ability justice issues, which arise out of such a pluralistic analysis.

1. The Biomedical Model

Since the early 1900s, medicine has been primarily concerned with what Donald Seldin, following Abraham Flexner and consistent with Christo- pher Boorse's late 1970s biological/functional account! of health and dis- ease, has described as bringing "to bear an increasingly powerful concep- tual and technical framework for the mitigation of that type of human suf- fering rooted in biomedical derangements.,,2 Within this still dominant biomedical model, disability is conceptualized as "a physiological or mental deficit,,,3 or negatively valued variation from what Norman Daniels

·Christopher Boorse, "Health as a Theoretical Concept," Philosophy of Science 44 (1977): 542-73.

2 Abby L. Wilkerson, Diagnosis: Difference: The Moral Authority of Medicine (Ithaca: Cornell University Press, 1998), p. 18.

3 Anita Silvers, David Wasserman, and Mary B. Mahowald, Disability, Difference.

© Copyright 2004 by Social Theory and Practice, Vol. 30, No.2 (Apri12004)

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230 Jeffrey C. Kirby

calls "normal species functioning.,,4 This conceptualization of disability calls for medical/scientific efforts to either prevent such variation or to restore individuals with such impairments, who are considered as "candi- dates for repair,"s to normal species functioning. In this vein, liberal theo- rists, with a primary interest in promoting fair equality of opportunity in the pursuit of chosen conceptions of the good, have recommended strate- gies to level the disabled players rather than the playing field of the domi- nant cooperative framework.

Most liberal theorists and mainstream bioethicists, who endorse what has come to be widely known as "the biomedical model," advocate re- source redistribution as the primary mechanism for handling justice issues related to health care and disability. Distributive models, such as those ad- vocated by Daniels, which call for the allocation of resources for the "fix- ing" of disabilities and the restoring of individuals to normal species func- tioning, and that advocated by Ronald Dworkin, which offers insurance- type compensation for those with disabilities, have provided a theoretical basis for taxation-related redistribution of public resources to the disabled in the form of government-insured medical services, social assistance pro- grams, subsidized special and integrated education, and so on.

Certainly the curative/restorative imperative of "the biomedical model" has facilitated the development of important medical and technological innovations in the treatment/management of some disabling conditions. Examples of this would be the availability in modem, developed countries of joint replacement surgeries for badly injured or degenerated joints, and of psychiatric medications for disabling psychiatric illnesses.

As Anita Silvers sees it, despite the apparent curative/restorative and distributive benefits for certain, distinct segments of the disabled popula- tion, allocation of resources to the class of the disabled "cannot help but construct the class's members as being uniformly needy" and does little "to correct the disadvantaging outcomes of exclusionary past practice. ,,6 Silvers claims that the process of compensating marginalized individuals with disabilities can function to continue them in their isolation outside the productive work force of the cooperative framework. Silvers also points out one of the negative implications of adoption of a "biomedical model of disability," that is, the tendency to discursively conflate all "disability"

Discrimination: Perspectives on Justice in Bioethics and Public Policy (New York: Rowman & Littlefield, 1998), p. 59.

4Norman Daniels, "Justice and Health Care, .. in Donald VanDeVeer and Tom Regan (eds.), Health Care Ethics: An Introduction (Philadelphia: Temple University Press, 1987), pp. 290-325.

5Silvers et al., Disability, p. 77. 6 Anita Silvers, "Reconciling Equality to Difference: Caring (F)or Justice For People

With Disabilities," Hypatia 10 (1995): 30-55, p. 35.

Disability and Justice 231

with "illness." The associated working assumption appears to be that dis- abilities are "to be suffered" in the same way that many medical illnesses are, and that disabled individuals cannot be considered "well" in the sense of well-being. Commenting on this perceptual, false eliding of all disabil- ity with "illness" and "suffering," Silvers observes that, from the perspec- tive of the abled, "to be impaired is to suffer.,,7

Liberal, distributive theorists tend to view disability as "dysfunction" that both interferes with the disabled individual's full participation in the cooperative framework and has negative effects on the "abled others" within the society. According to Allen Buchanan, although some compro- mises on the part of the abled are warranted in the legitimate interest of inclusion and equal opportunity for the disabled, the competing, equally legitimate "maximizing interest" of the abled requires that any such ac- commodation for "people with disabilities" should not negatively impact the efficiency and complexity of the chosen dominant cooperative frame- work. Buchanan utilizes a troublesome and rather offensive "card game" analogy in an attempt to illustrate these competing interests. He asks the readers of the collaboratively authored From Chance to Choice to suppose that a group of adults and young children are in the process of choosing a card game for all of them to play. A choice of "go fish" would allow all group members to participate in the game, while a choice of contract bridge, which would be more stimulating for the adults, would effectively exclude the children from meaningful participation. Buchanan contends that the children (read: "people with disabilities") have a legitimate interest in full participation in "the game" (read: society/cooperative framework), but that this needs to be weighed against (what he calls) the legitimate in- terest of the adults (read: the abled majority) in choosing a game/society that is maximally stimulating for them. 8

Another problem for the biomedical model is that its normalizing of "species-typical functioning" tends to conceal the contingent nature of human functioning. The currently accepted functional norms are "not the product of any biological mandate or evolutionary triumph,,,9 and are not necessarily maximally efficient. The biomedical model's adoption of the dominant class's mode and level of functioning as the relevant standard is an arbitrary and contingent one, from an evolutionary perspective, and, according to David Wasserman and others, the consideration of a function as "species-typical" "reflects the vagaries of evolution,,10 and the con- tingently selective matching of function to environment. From an evo-

7Silvers et ai., Disability, p. 96. RAUen Buchanan, Dan W. Brock, Norman Daniels, and Daniel Wikler, From Chance

to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2(00), p. 294. 9Silvers et ai., Disability, p. 73. IOIbid., p. 174.

232 Jeffrey C. Kirby

lutionary perspective, departures from "species-typical function" can rep- resent potential advantage, as heritable variation drives evolution. In addi- tion, attainment of the very narrow range of functioning considered by lib- eral theorists and most health care providers to be "species typical" is not a necessary requirement for the experience of an optimal quality of life. It cannot simply be assumed that the use of medico-mechanical assistance, for example, a wheelchair or a hearing aid, to perform a life's activity low- ers the quality of life of the individual using such an assistive device.

Martha Nussbaum is critical of what liberal social contractarian theo- ries have to say about the severely disabled. She argues that the limiting of decision-making authority by these theories to rational, fully cooperating, bargaining agents has the effect of excluding the severely disabled who end up being handled as an afterthought once basic societal institutions are structured and operational.!!

2. Disability as Social Construction

A disability conceptualization promoted by many disability rights advo- cates conceives of disability as a socially constructed phenomenon. On this account, the fundamental problem lies with the constructed "playing field," and not with the "disabled player." According to Silvers, much of the dis- advantage experienced by people with disabilities is "the stubborn artifact of inequitable social arrangements.,,12 During the industrialization and ur- banization of developed countries, societies were systematically organized to accommodate only those who fell within an extremely narrow range of physical and cognitive functional variation. As such, historical and cultural contingencies have resulted in the creation of a modem, dominant coop- erative framework that is inaccessible to many people with disabilities. For example, public transportation systems and places of work, leisure, culture, and worship have been designed for utilization by "leg-mobilizers," and not by those who rely on wheelchairs for their primary mobility. As a more recent example, when Microsoft moved from a text-based DOS format to a graphic/screen icons-based Windows format, the company, citing the need for product secrecy, refused to reveal Windows computer codes to spe- cialized companies that develop and produce voice-output software. This business decision, along with Microsoft's aggressive marketing strategy, which resulted in many business applications becoming operationally de- pendent on Windows, led to a situation in which many visually impaired

IIMartha C. Nussbaum, "Capabilities and Disabilities: Justice for Mentally Disabled Citizens," The Tanner Lectures on Human Values, Australian National University, No- vember 2002, pp. 2-17 (http://philrsss.anu.edu.au/tanner/papersffanner_l.rtf).

12Silvers et aI., Disability, p. 173.

Disability and Justice 233

workers found themselves unable to perform computer tasks that were es- sential for their existing jobs and for vocations to which they aspired. It was only after the state of Massachusetts announced that it would not pur- chase any new Microsoft products unless Windows provided accessibility to visually impaired screen readers that Microsoft agreed to build compati- bility for the necessary adaptive devices into their Windows format. 13

A social construction lens focuses some needed light on the interactive nature of disability. Individual functional ability is seen for what it is: a fluid concept depending both on constructed, environmental artifacts, and on the physical/cognitive status of the individual. Abby Wilkerson ad- dresses this insight in her promotion of a "material-semiotic" understand- ing of health and disability that is "always embedded within specific social contexts rather than as (merely) ontological properties of individuals.,,14 Carolyn Ells, arguing from a relational, socially situated conception of self, similarly comments that "the meaning of any particular loss of control de- pends on the nature and social situation of the experience of impair- ment." 15

For social constructionists, the remedy for exclusionary social practices is social re-engineering rather than personal renovation of the disabled (although most acknowledge that some social re-engineering can arise from biomedical model prescriptions). For Silvers, compensatory social reconstruction is a demand of justice, conceived of in terms of equality of opportunity for those with equal talents. On this view, efforts should be directed at modifying existing mobility/communication systems and insti- tutional practices to eliminate barriers and allow disabled individuals to engage and participate in the cooperative framework, rather than be di- rected at preventing or fixing the motor, sensory, and cognitive "deficits" of disabled individuals. Priority should be given to the redesign of existing systems and to the design of new systems to allow as much access to the cooperative framework as possible for all individuals, regardless of their physical/cognitive status.

There is no question that a redesigned cooperative framework would be a great equalizer for people with certain physical disabilities such as para- plegia and visual/hearing impairments. However, some severe physical and cognitive disabilities seem to represent more than social construction. Individuals with such permanent, profound disabilities are unlikely to ever achieve full participation in society's vocational, social, and cultural prac- tices, no matter how much re-engineering takes place. Silvers and other disability rights theorists/activists, in their efforts to dismiss distributive

13lbid., pp. 107-9. 14Wilkerson, Diagnosis, p. 97. 15Carolyn Ells, "Lessons About Autonomy from the Experience of Disability," Social

Theory and Practice 27 (2001): 599-614, p. 607.

234 Jeffrey C. Kirby

initiatives arising out of "biomedical model" considerations, have some- times tended to downplay this grim reality for a substantial segment of the disabled population. Taken by itself, social reconstruction of the instru- mental type will not alleviate all the disadvantages faced by the "worst off' sub-group of the disabled. Also, a theoretical framework that takes seriously a commitment to the moral equality of all persons must find a meaningful place for the profoundly disabled within its scope of justice.

3. Disability as Difference

A third conceptualization of disability draws much of its content and le- gitimacy from the methodological approaches of feminist theory. In recent decades, feminists have argued that liberal individualism is a far from neutral political theory that tends to obscure a pervasive bias in "reflecting the ... norms of society rather than achieving a view from nowhere.,,!6 Sil- vers speaks of "programmatic normalization" as the equalizing strategy promoted by adoption of the biomedical model, which she contends "lends itself to oppression because it validates and further imposes the dominant social group's preferences and bias.,,!7 Other feminist theorists, including the postmodernist Margrit Shildrick, view disability as a condition that is "engendered as femme in terms of its implied dependency and passivity.,,18

The concepts of ability and disability lend themselves to the establish- ment of a conceptual dichotomy, or what Shildrick calls "a quasi-structural binary.,,19 In western societies, a medicalizationlpathologization "gaze" tends to classify individuals as either normaVabled or abnormaVdisabled and, according to Iris Marion Young, this normaVabnormal distinction amounts to "a pure good/bad exclusive.,,20 Another consequence of adop- tion of this dichotomy is the stigmatization of the disabled as ill, needy, and incompetent as compared to the abled majority, who are viewed as well, independent, and competent.

According to Silvers, modern discourse is "shaped by a dialectical con- vention that precludes talking about impairment as if it is acceptable or even unexceptional." Silvers contends that to characterize a natural life condition as a weakness or loss "prematurely closes by definition what should be an open question about value.,,2! She also points out that living

16Wilkerson, Diagnosis, p. 7. 17Silvers et a!., Disability, p. 73. 18Margrit Shildrick, Leaky Bodies and Boundaries: Feminism, Postmodemism, and

(Bio)ethics (New York: Routledge, 1997), p. 50. 19Ibid. 20Iris Marion Young, Justice and the Politics of Difference (Princeton: Princeton

University Press, 1990),p.129. 21Silvers et aI., Disability, p. 86.

Disability and Justice 235

with a disability does not necessarily involve a net loss of experiences of intrinsic worth.

Young has offered a conceptualization of social group oppression that accounts for some of the injustices and disadvantages experienced by members of certain social groups as the result of everyday practices. This form of oppression is structural in nature, in that it results in systemic con- straints on social groups within a society. As Young indicates, "its causes are embedded in the unquestioned norms, habits, and symbols, in the as- sumptions underlying institutional rules and the collective consequences of following those rules.,,22 Such oppression finds its expression and power in unconscious assumptions, cultural stereotypes, and the historically contin- gent, institutional structure of bureaucratic hierarchies.

A large percentage of the disabled population meets at least two of Young's sufficient conditions ("faces of oppression") for social group op- pression. Two of the most relevant "faces of oppression" in the disability context are marginalization, which Young considers to be "perhaps the most dangerous form of oppression," and cultural imperialism. With re- gard to the first, Young defines marginals as "people the system of labor cannot or will not use.,m The historical denial of access of the disabled to meaningful work in modem industrial societies has certainly had the net effect of marginalizing most of them, by Young's definition. The disabled have also been marginalized in the (non-Youngian) broader sense that the structural barriers and biased practices of the existing cooperative frame- work have resulted in a lack of meaningful access to many of the core so- ciocultural activities that constitute a society.

Young interprets the injustice of cultural imperialism as that situation in which "the oppressed group's own experience and interpretation of social life finds little expression that touches the dominant culture, while the same culture imposes on the oppressed group its experience and interpre- tation of the sociallife.,,24 Most of the abled have little real awareness of the sociocultural experiences of people living with disabilities, a reality that Silvers eloquently describes as "the opacity of experiences mediated by serious impairment.,,25 On an empirical basis, few would deny that, in modem western societies, the cultural representations of the abled majority dominate the sociocultural landscape.

For Elizabeth Anderson, the citizens of a just society have an obligation to promote equality. In her conception of a democratic society, respect for citizens, including the disabled, is instantiated by recognition of their enti- tlement to reject oppression and claim social goods "on account of their

22Young, Justice, p. 4l. 23 Ibid., p. 53. 24Ibid., p. 60. 25Silvers et ai., Disability, p. 103.

236 Jeffrey C. Kirby

equality rather than their inferiority to others.,,26 Another model of oppression, based on accumulative harm, also ap-

pears to apply to disabled experience. On this account, oppression takes the form of a set of individual actions, taken by different people, that to- gether constitute an accumulative harm. As illustrated by Marilyn Frye's well-known birdcage metaphor, one act or attitude may not be constraining by itself, but an accumulation of such acts or attitudes can imprison and oppress.27 Andrew Kernohan uses an environmental pollution analogy to illustrate how "harmful cultural pollution" requires "the behaviors, repre- sentations, and expressive acts of many people.,,28 Frye and Kernohan's shared, main point appears to be that such individual harms, taken collec- tively, can be culturally oppressive. With regard to an example of rele- vance to the disabled, a business decision which makes a particular com- puter communication system inaccessible to the visually impaired may not be oppressive in itself, but this, in combination with many other discrimi- nating acts, such as the lack of braille direction indicators in public build- ings, can result in a cooperative framework that is fundamentally oppres- sive to the visually impaired.

In Michel Foucault's work on the power relations manifested in the "normalizing gaze of the clinic," his analysis of the five operations that "the normalizing gaze" brings into play seems to be applicable to many of the oppressive dynamics that characterize the experiences of "people with disabilities" in society. Foucault's five operations consist of: comparison (between the abledlnormal and the disabledlabnormal), differentiation (between the two, with the disabled rendered as "the other"), value hierar- chization (with the experience of the abled valued above the experience of the disabled), homogenization (the conformity imperative imposed on the disabled), and exclusion (of the disabled from the dominant cooperative framework).

Another interpretation of "disability as difference" involves considera- tion of "people with disabilities" as a "natural kind." Essentialism about disability is the view that the categories of disability and ability refer to "natural human kinds." According to Edward Stein, in discussions refer- encing sexual orientation, "natural human kinds" refer to groupings of people that play an explanatory role in scientific explanation.29 Modem

26Elizabeth Anderson, "What is the Point of Equality?" Ethics 109 (1999): 287-337, p.287.

27Marilyn Frye, "Oppression," in The Politics of Reality: Essays in Feminist Theory (Trumansburg, N.Y.: Crossing Press, 1983), pp. 1-16, at pp. 4-5.

28Andrew Kernohan, Liberalism, Equality, and Cultural Oppression (Cambridge: Cambridge University Press, 1998), p. 73.

29Edward Stein, "Essentialism and Constructionism about Sexual Orientation," in David L. Hull and Michael Ruse (eds.), The Philosophy of Biology (Oxford: Oxford Uni- versity Press, 1998), p. 428.

Disability and Justice 237

discourse in the scientific community and society-at-Iarge seems to pre- sume such a designation of the disabled as a "human natural kind." Dis- ability rights advocates dispute this claim. Silvers contends that "disability is not a 'natural kind', nor is the disadvantage attendant on it an immutable fact of nature.,,30 Mary Mahowald comments that "perhaps the least recog- nized cause of disabilities is the myopia of the currently able dominant group that structures society for its 'natural kind' .,,31 Others might argue that the grouping of "people with disabilities" represents neither a "natural human kind" nor what Stein calls a "social human kind," which has a par- ticular social role to play. Instead, "people with disabilities" might be con- sidered, in Stein's terminology, to be an "empty human kind," that is, a grouping of people which is supposed to be a natural human kind, but which fails to match the way nature actually groups people.

As I discussed previously, on a Y oungian analysis, the category of "people with disabilities" can be conceptualized as an "oppressed social group" similar to the categories of women, members of racial and ethnic groups, those of gay sexual orientation, and so on. As with most other op- pressed social groups, the grouping of individuals considered, either by themselves or by society at large, as disabled is very heterogeneous in terms of the types and degrees of individual impairment. Some potentially "well-managed" disabilities, such as those related to certain psychiatric illnesses and some chronic physical conditions, can be rendered "invisible" to the general public. Individuals with such invisible disabilities sometimes choose to "pass" in society in order to avoid the disadvantages attendant to a labeVstigma of disability. Other sociocultural groups, which the domi- nant group considers disabled, such as members of the deaf community, do not see themselves as such, and actively attempt to develop and maintain a robust culture that affirms and asserts their positive difference. Sometimes individuals with sightlhearing and mild to moderate physicaVmobility dis- abilities, consciously or unconsciously, attempt to distance themselves from individuals with disabilities characterized by severe psychiatric ill- ness and profound physicallcognitive dysfunction. Silvers, herself, tends toward this in the paucity of her commentary on how the theoretical framework she advocates would impact on the most severely disabled.

As Susan Wendell comments, "all categories mask differences.,,32 With regard to the category of "people with disabilities," this masking applies not only to the varied experiences of living with different disabilities but to the other coexisting axes of oppression of relevance to particular individu- als, such as those of gender, race, ethnicity, and sexual orientation. In real-

30Silvers et aI., Disability, p. 76. 31Ibid., p. 219. 32Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disabil-

ity (New York: Routledge, 1996), p. 71.

238 Jeffrey C. Kirby

ity, for many people, the experience of everyday life is mediated by inter- locking axes of oppression.

Despite the difficulty associated with lumping people with highly vari- able life experiences together as an "oppressed social group," for many people with disabilities, identity as "a person with a disability" has what Wendell describes as "a vital social meaning.,,33 Wendell contends that what the diverse membership of this social group shares is the experience of oppression and the struggle against it.

A final interpretation of "disability as difference" is one of disability as a source of positively valued, epistemic advantage. On this view, the par- ticular standpoint of living with a disabling condition can provide the af- fected individual with valuable ways of "being and knowing" that are not accessible to the abled. Many disabled persons speak of how their disabil- ity has enhanced or positively shaped their lives, despite the presence of accompanying, instrumental disadvantages. For example, an individual living with a major mood disorder, who has experienced dark, dysphoric recesses unknown to those without such psychiatric illness, takes that ex- periential knowledge and incorporates it into empathic responses to others who are struggling in the living of their own particular lives. Other exam- ples abound, including those popularized in the writings of Oliver Sacks. In the same way that a non-neutral, feminist perspective can inform scien- tific discovery in a post-positivist age that values truth-conducive objec- tivity,34 it is possible that the standpoint/perspective of "people with dis- abilities" could inform discoveries and enhance the generation of knowl- edge in the scientific, philosophical, social, and aesthetic fields through the asking of important questions that have not been considered from an abled standpoint/perspective.

4. Disability as Potentially Universal Experience

It is possible to consider a fourth conceptualization of disability, that of "disability as potentially universal experience," although this conceptuali- zation is not referred to as such in the disability literature. On this account, disability, and the "care" requirements that attend it, are viewed as the po- tentiallife states/experiences of all human beings.

Steven Smith considers the ideal of independence to be a myth in that it is a goal that is "unquestionably and falsely assumed to be ... obtainable.,,35

33Ibid., p. 25. 34Richmond Campbell, Illusion of Paradox: Feminist Epistemology Naturalized

(Lanham, Md.: Rowman & Littlefield, 1998), p. 33. 35Steven R. Smith, "Distorted Ideals: The 'Problem of Dependency' and the Mythol-

ogy of Independent Living," Social Theory and Practice 27 (200l): 579-98, p. 588.

Disability and Justice 239

Wendell echoes this in her comment that the abled in society tend to em- brace "a myth of control, whose essence is the belief that it is possible, by means of health actions, to have the bodies we want and to avoid illness, disability and death.,,36 However, it is a rather obvious, empirical fact that human beings can, and regularly do, get sick and become disabled. Mi- chael Walzer, in discussions related to his "spheres of justice" conceptual framework, warns that "disease is a general threat; old age, a general pros- pect.,,37 In commenting on the good/normal/well vs. bad/abnormal/ill di- chotomy inherent in the medicalization of difference, Young points out that "these opposites are located on one and the same scale, it is easy to slide from one to the other, the border is permeable" and "it is possible to get sick.,,38

An individual's physical and mental health state often fluctuates sig- nificantly over a lifetime, as does his or her associated degree of depend- ency on others. Eva Feder Kittay comments that "there are identifiable states of our life history in which dependency is unavoidable.,,39 "Normal species functioning," judged from a young-adult ideal standard, is a very difficult thing to maintain throughout a lifetime, even for those most fortu- nate in the natural lottery. Unless an individual is one of the exceptional, lucky few who have a "sudden death experience" while old and in robust health, most persons will eventually end up disabled to some degree, and this may be for a prolonged period of time. With this reality in mind, some disability rights activists refer derisively to the smug abled majority as TABS: Temporarily Able-Bodieds.40 To break down the self-denial of the abled and to dissolve conceptual barriers between the currently abled and the disabled, Shildrick advocates that the presently healthy majority be pushed "to a recognition that they are merely temporarily able bodies."41

Joan Tronto, in her book Moral Boundaries, points out that human life is fundamentally a condition of interdependence.42 All human beings re- quire tremendous care and nuturing as infants and children, and even abled, supposedly fully independent, autonomous adults in their prime of life and health rely on many others for their essential well-being. Kittay contends that, without such support, often provided by female "depend- ency workers," an individual "cannot participate in the reciprocal ar-

36Wendell, The Rejected Body, p. 9. 37Michael Walzer, Spheres of Justice: A Defense of Pluralism and Equality (New

York: Basic Books, 1983), p. 80. 38Young, Justice, p. 129. 39Eva Feder Kittay, Love's Labor: Essays on Women, Equality, and Dependency

(New York: Routledge, 1999), p. 29. <Wwendell, The Rejected Body, p. 61. 41Shildrick, Leaky Bodies, p. 60. 42Joan Tronto, Moral Boundaries: A Political Argument for an Ethics of Care (New

York: Routledge, 1993), pp. 101-55.

240 Jeffrey C. Kirby

rangements of production and consumption, as defined within a market economy.,,43 Wendell comments accurately that most industrial societies provide the abled with a lot of help/care in the form of education, training, social support, public communication and transportation facilities, public recreation, and other services. Such assistance tends to be taken for granted by the abled majority and to be considered as entitlement rather than help or care. Also, other than rare exceptional persons, referred to by psychia- trists as schizoid personalities and to lay persons as "happy hermits," hu- man beings, as social animals, need (and benefit from) regular, meaningful interaction with, and the social support of, others. Tronto argues for the full recognition of the central role that such care plays in all our lives from birth to death. Alisa Carse and Hilde Lindermann Nelson comment that a progressive "ethic of care," such as that advocated by Tronto, can "chal- lenge us to become attentive to differences in perspective and need as a demand ojjustice.'M

Alasdair MacIntyre, a Thomistic Aristotelian, argues for a social and political conception of the common good that "requires both the virtues of the independent practical reasoner and the virtues of acknowledged de- pendence.,,45 On his view, the meeting of reciprocal care needs in a just, communal society requires a commitment "that is not conditional upon the contingencies of injury, disease, and other afflictions.'.46 Acknowledgment of the critical nature and extent of our dependence on others, and of the pervasiveness of disability during the experience of lifetimes, provides a compelling reason for virtuous social behavior. MacIntyre considers the adoption of what he calls "the virtue of just generosity" to be a require- ment for the flourishing of human beings as the dependent and rational animals that we are.47 This virtue requires that when faced with the urgent, legitimate needs of another, one finds sufficient reason in the need itself to act in a virtuous manner toward the needy or disabled other. As such, Mac- Intyre's virtue of just generosity has an element of Aristotle's misericor- dia: emotional empathy and agency that derives from a recognition and understanding of the other's distress as one's own.

s. Strategies Arising from these Disability Conceptualizations

The examined frameworks provide some specific tools for handling justice

43Kittay, Love's Labor, p. 129. 44Anne Donehan and Laura Purdy (eds.), Embodying Bioethics: Recent Feminist

Advances (Lanham, Md.: Rowman & Littlefield, 1999), p. 27. 45 Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the

Virtues (Chicago: Open Court Publishing Company, 1999), p. 166. 46Ibid., p. 128. 47Ibid., pp. 133, 141.

Disability and Justice 241

issues of relevance to disability. The following is a brief discussion of what each of the conceptualizations suggest in terms of strategies for miti- gating injustices faced by "people with disabilities."

The "disability as social construction" paradigm provides a theoretical platform for pragmatic efforts to reduce the myriad instrumental barriers faced by people with disabilities on a daily basis. Wendell contends that, "much of what can be socially constructed can be socially decon- structed.,,48 This claim has some plausibility, as, with sufficient funds and political will, many of the organized environments and activities, which were historically structured for a too-narrow range of functional abilities, can be restructured to render them accessible to some individuals with dis- abilities. A limited amount of such instrumental-type, social re-engineering has already been achieved in Western societies, with particular benefits accruing to those with hearing, speech, and certain mild-to-moderate physical mobility impairments.

The provision of reasonable access to public buildings and communi- cation/transportation systems for a highly functional segment of the dis- abled population is a lot easier to achieve than the complex social recon- struction required in order to allow more of the profoundly disabled to participate in meaningful work and other inclusive social practices. These latter goals require significant efforts to reform exclusionary and biased practices, which are well entrenched in the cooperative framework, and which have been accepted, without much reflection, by the abled majority. At the very least, these more challenging social reconstruction efforts will require the meaningful input and active participation of people with a wide variety of abilities. Political advocacy of the strident and impassioned ACT-UP variety, such as that pioneered by HIV activists, may be neces- sary to grab and maintain the abled majority's attention, and to translate that attention into a political commitment to truly comprehensive social reconstruction, which would create what Silvers calls an "inherently ac- commodating society.,,49

The theoretical approaches that conceptualize "disability as difference" suggest a variety of strategies to eliminate existing oppression and promote the development of new non-oppressive social structures. Specific recom- mendations arising out of Young's analysis could assist in reducing the oppression experienced by the social group constituted by "people with disabilities" (assuming that such a social group can be said to exist). Young recommends a type of polity, which she calls "democratic cultural pluralism,',50 that is primarily intended for implementation at local and regional levels of government. It calls for the establishment of political

48 Wendell, The Rejected Body, p. 45. 49Sil vers et aI., Disability, p. 26l. 50Young, Justice, p. 174.

242 Jeffrey C. Kirby

mechanisms whereby legitimate, accountable representatives of oppressed social groups are meaningfully seated at the relevant tables where trans- parent, democratic, decision-making procedures are taking place. Young also proposes that, in addition to the set of fundamental rights accorded all citizens, members of oppressed social groups should be granted sets of special rights consisting of "a more specific system of group conscious policies and rights" aimed at securing equality with members of the domi- nant social group. This might include rights of influence and veto over the generation and implementation of specific government policies that would directly and specifically affect a particular oppressed social group. For a heterogeneous social group such as "people with disabilities," the specific forms that such meaningful representation and special rights would take would depend, of course, on the government policies under discussion.

Shelley Tremain agrees with Young and other feminist theorists that advocacy for the disabled is necessary. However, she contends that the disabled people's movement should resist appeals to "an identity upon which ... (their) subjection relies." Instead, Tremain argues that disabled advocates and activists develop strategies that formulate their demands in terms of "what we want" rather than "who we are.,,51

One particular policy area in which the abled majority might resist the granting of special rights to "people with disabilities" would be that of prenatal screening, which allows for, and arguably promotes, selection against some forms of disability. Many parents are strongly committed to a projectivist conception of parenting, which supports the right of parents to take reasonable measures to help ensure that the children they intend to raise have characteristics that accord with their own parental and long term family goals.52

A strategy suggested by Kernohan may be of some utility in reducing the entrenched biases and stigmatization related to disability. Kernohan proposes a relaxation of the liberal doctrine of state neutrality to allow for the development of "an advocacy strategy" consisting of state-subsidized ideological activity aimed at countering false and harmful cultural prac- tices. 53 What Kernohan is advocating here is for the state to utilize its eco- nomic and educationaVideological power apparatuses to actively challenge and oppose false beliefs about inequality. Kernohan wants this to be achieved by persuasion, not coercion, and stipulates that such an advocacy strategy should not interfere with basic liberties of thought and expression.

51Shelley Tremain, "On the Government of Disability," Social Theory and Practice 27 (2001): 617-36, p. 635.

52For a detailed discussion of the competing interests represented by the projectivist and expressivist arguments, see E. Parens and A. Asch, 'The Disability Rights Critique of Prenatal Testing," Hastings Center Report 29 (1995), Supplement 2.

53Kernohan, Liberalism, pp. 96-102.

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This advocacy model enjoins the government to actively promote the elimination of oppressive attitudes and practices and to intervene in vari- ous public forums, where state representatives would participate vigor- ously in the debate on· the side of equality for all citizens, including those with disabilities.

Another strategy, arising out of the insight that the particular perspec- tive/standpoint of the disabled can be epistemically advantageous, would be for "people with disabilities" to enhance the dissemination of their nar- ratives and cultural representations of disability to the abled majority. This might involve the creation of literary fiction, biographies, poetry, film, and music for mass circulation, and the giving of radio, television, and print interviews by both high-profile and "non-heroic" disabled individuals. An existing example of such a creative vehicle is the book, Darkness Visible, by William Styron, which eloquently documents the author's personal ex- perience with the profound melancholy associated with major depressive illness. In addition, the dissemination of accurate, detailed information about what it is really like for affected children and their families to live with such conditions as Down's Syndrome and syringomyelia would allow prospective parents to make truly informed decisions about prenatal test- ing, rather than relying on potentially biased counseling services and their own uninformed, morbid, counterfactual speculation about the nature of living with disabilities.

Tronto provides a political analysis of some relevance to a conceptuali- zation of "disability as potentially universal experience." Tronto's aim is to promote a central and political vision informed by "care," which integrates the practical, moral and political aspects of care. For Tronto, "caring well" is inseparable from justice and intertwined with it in a fundamental way. It involves the seamless integration of four interconnected phases of the car- ing process. Historically, Tronto's first and second phases of care, that is, those of "caring about" (the existence of a need is identified and an as- sessment is made that this need should be met) and "taking care of' (the assumption of responsibility for the identified need and the determination of the agency necessary to respond effectively to the need), have been dominated by white, abled, heterosexual men, while members of op- pressed social groups have been over-represented in the third and fourth phases of care, that is, those of "care-giving" (the direct meeting of needs for care), and "care-receiving."s4 For Tronto, fragmentation of these phases of care is constitutive of oppression. She advocates a full integration of the four phases of care and their related moral elements of attentiveness, re- sponsibility, competence, and responsiveness into an appropriately con- ceptualized whole. With reference to people with disabilities, actualization

5"Tronto, Moral Boundaries, pp. 106-8.

244 Jeffrey C. Kirby

of this goal might involve providing disabled care-receivers with real op- portunities to identify their own needs and to shape the solutions to those needs. It might also involve arranging to have appropriate representatives of people with disabilities seated at tables where decision-making proce- dures concerning the first and second phases of care are taking place.

Tronto's "care" analysis calls for the full recognition and just compen- sation of professional and family care-givers as highly valuable contribu- tors to society as a whole. For Kittay, an adequate social justice account for a society "consisting of nested dependencies" must be inclusive of de- pendency workers, who by the nature of their care relations with others, are entitled to receive the benefits of moral obligations owed to them by care-receivers and society in general.55

Even with optimal social reconstruction, the elimination of discrimina- tory and oppressive attitudes/practices, and a radical reformulation of "care" practices, there will always be a need for two strategies arising out of "the biomedical model" of disability, both of which are essentially dis- tributive in nature:

(1) Liberal individualism theories, which incorporate a Rawlsian-like "difference principle," already somewhat inform existing social policies in many developed countries with redistribution of some resources to "the worst off' and unemployed disabled, including those with the most pro- found cognitive and physical impairments, through the allocation of gov- ernment taxation monies for various social support programs. For this par- ticular segment of the disabled population, such resource reallocation is essential, as it is likely that many of the profoundly disabled will never achieve meaningful access to the gainful work force of the dominant coop- erative framework. However, it should be noted that although distributive theories suggest mechanisms for redistribution of resources to "the least well off," including the profoundly disabled, in reality, in many of the most economically developed countries, including Canada and the U.S.A., the level of social assistance provided to this marginalized segment of so- ciety could, at best, be described as "subsistence." Clearly, despite much ardent lip service to a justice principle that mandates that inequalities be arranged so as to provide the greatest benefit to the least advantaged, this Rawlsian injunction has not been well actualized in the institutional prac- tices of many developed societies. This is quite evident in the easily dis- cernible observation that grinding poverty remains a grim reality for many "people with disabilities" and their families (as well as for many members of other oppressed social groups).

(2) The curative/restorative imperative associated with adoption of "the biomedical model" has resulted in some dramatic breakthroughs in the

55Kittay, Love's Labor, p. 188.

Disability and Justice 245

treatment and management of certain disabling medical conditions for those (few internationally) who have the necessary financial means to ac- cess them. Examples of such innovations include cochlear implants for those with profound hearing impairments who wish to be integrated into the hearing culture, electric wheelchairs and voice-activated computer and mobility systems for those with severe physical and sensory disabilities, and effective psychiatric medications for those whose psychiatric condi- tions have not responded to other treatment modalities. The adoption of liberal distributive principles, such as those proposed by Daniels for health care, which call for the public funding of research into medical and techni- cal innovations aimed at restoring functional status, and for covering the costs of providing such innovations to individuals who choose to utilize them, potentially mitigates some of the instrumental disadvantages faced by people with disabilities. However, it should be noted that disability theorists, such as Silvers, and many disability rights advocates have con- cerns that an over-focus on curative and restorative imperatives will sym- bolically undermine efforts aimed at getting the abled majority to view "the having of disabilities" as both "normal" and acceptable.

Conclusion

As the preceding discussion has indicated, each of the examined conceptu- alizations of disability has something of value to offer in terms of identi- fying, framing, and handling crucial justice issues related to disability. It also seems apparent that no one conceptualization is capable of finding adequate space for, and providing optimal attention to, all of the justice issues of relevance to people with disabilities.

The robust account I wish to promote calls for further, pluralistic agency directed at: the elimination of remaining instrumental barriers to mobility and communication; the deconstruction of structural, institution- ally based oppression; the challenging and modification of discriminatory attitudes/practices; a political reformulation of "care" as a fully integrated, dynamic practice; enhancement of sociaVfinancial supports for "the worst off' segment of "people with disabilities"; and redistribution of taxation- generated resources to the development and provision of medical and technological innovations (for utilization by people with disabilities on a voluntary basis).

Pragmatic strategies, arising out of consideration of such a pluralistic account of disability, incorporating constructive elements of all of the ex- amined disability conceptualizations, can be summarized as follows:

• Political agency (and possible activism), involving meaningful input from "people with disabilities," aimed at social re-engineering of the

246 Jeffrey C. Kirby

cooperative framework to enhance access to vocational and sociocul- tural opportunities for those with as wide a range of abilities as possi- ble.

• Presentation of accurate and affirming cultural representations of "peo- ple with disabilities" to the general public, and related efforts to en- hance public awareness and recognition of the unique and valuable knowledge/perspective of people living with disabilities.

• State advocacy to promote "equal concern and respect" for all citizens and non-oppressive social practices.

• Establishment of mechanisms to provide meaningful representation of "people with disabilities" at political decision-making tables, plus or minus the granting of certain "special rights" of veto/influence.

• Increased awareness of disability and need for "care" as acknowledged, potentially universal experience, with a related reformulation of fully integrated "care" from the perspective of care-receivers; this would in- volve enhanced recognition of, and support for, family and professional care-givers.

• Enhanced representation of "people with disabilities" in decision- making procedures in the executive "phases of care," involving "needs" identification and determination of agency necessary to effectively and equitably meet those "needs."

• Public funding for the development of, and subsequent provision of, medical and technical innovations that enhance the functional status of those who choose to utilize them.

• Enhanced redistribution of communal, taxation-generated resources for the provision of financial and sociocultural supports to those with pro- found physical and cognitive impairments who are unable to participate fully in the cooperative framework.

The foregoing discussion suggests that a broad, interlocking analysis, which attends to, and draws strength from, the biomedical model and vari- ous other conceptions of disability including those of disability as "social construction," "difference" and "potentially universal experience," could give rise to a robust, pluralistic account of disability that lends itself to pragmatic recommendations for mitigating existing disability injustice.56

Jeffrey C. Kirby Department of Bioethics

Dalhousie University [email protected]

561 wish to thank Susan Sherwin for her kind assistance in development of this paper.