disability, dependence, dignity and care

DISABILITY, DISABILITY, DEPENDENCE, DEPENDENCE,

DIGNITY AND CARE DIGNITY AND CARE

Eva Feder KittayEva Feder KittayStony Brook University/SUNY USAStony Brook University/SUNY USA

PrefacePreface

People with disability continue to suffer People with disability continue to suffer from discrimination in jobs, education, from discrimination in jobs, education, housing, and are deprived of capabilities as housing, and are deprived of capabilities as basic as the freedom to move about freely. basic as the freedom to move about freely. Even in aspects of life such as friendships, Even in aspects of life such as friendships, disabled people, especially the cognitively disabled people, especially the cognitively disabled find themselves excluded. (See disabled find themselves excluded. (See Hans Reinders). Hans Reinders).

In quest of an ethics of inclusionIn quest of an ethics of inclusion

Disability is in search of an ethics that will articulate Disability is in search of an ethics that will articulate both the harms faced by people with disabilities, both the harms faced by people with disabilities, discrimination that threaten dignity as well as well-discrimination that threaten dignity as well as well-being,and offer moral resources for redress. being,and offer moral resources for redress.

In most dominant theories of justice, dignity is In most dominant theories of justice, dignity is coupled with the capacity for autonomy. A person’s coupled with the capacity for autonomy. A person’s well-being or welfare are usually a prerequisite to well-being or welfare are usually a prerequisite to autonomy, but when individuals finds themselves autonomy, but when individuals finds themselves dependent on others, as many people with disabilities dependent on others, as many people with disabilities do, for self-care, for economic security, for safety, the do, for self-care, for economic security, for safety, the dignity which comes with autonomy appears dignity which comes with autonomy appears threatened. threatened.

In quest of an ethics of inclusionIn quest of an ethics of inclusion

For this reason many people within the For this reason many people within the disability community, share the views of disability community, share the views of Michael Oliver who writes that dependency Michael Oliver who writes that dependency isis “ “created amongst disabled people, not created amongst disabled people, not

because of the effects of the functional because of the effects of the functional limitations on their capacities for self-care, limitations on their capacities for self-care, but because their lives are shaped by a variety but because their lives are shaped by a variety of economic, political and social forces which of economic, political and social forces which produces this dependency” (Oliver 1989: 17). produces this dependency” (Oliver 1989: 17).

Dependence, disability and dignity Dependence, disability and dignity

Instead people with disability have wanted to insist on Instead people with disability have wanted to insist on their right to live independent lives and to be granted their right to live independent lives and to be granted the same justice that is bestowed on people without the same justice that is bestowed on people without disabilities, or “the temporarily abled.” disabilities, or “the temporarily abled.”

The need for care or as many would rather say The need for care or as many would rather say “assistance” is viewed not as a sign of dependence but “assistance” is viewed not as a sign of dependence but as a sort of prosthetic that permits one to be as a sort of prosthetic that permits one to be independent. Judy Heumann, one of the founders of independent. Judy Heumann, one of the founders of the Independent Living Movement, wrote influentially: the Independent Living Movement, wrote influentially: "To us, independence does not mean doing things "To us, independence does not mean doing things

physically alone. It means being able to make physically alone. It means being able to make independent decisions. It is a mind process not contingent independent decisions. It is a mind process not contingent upon a normal body" (Heumann 1977).upon a normal body" (Heumann 1977).

The Americans with Disability ActThe Americans with Disability Act

Much has been accomplished by the pioneering Much has been accomplished by the pioneering work of these disability advocates, in the work of these disability advocates, in the United States most notably the Americans with United States most notably the Americans with Disabilities Act (enacted in July 1990). Disabilities Act (enacted in July 1990).

That act states: That act states: ““the Nation’s proper goals regarding individuals the Nation’s proper goals regarding individuals

with disabilities are to assure equality of with disabilities are to assure equality of opportunity, full participation, independent opportunity, full participation, independent living, and economic self-sufficiency for such living, and economic self-sufficiency for such individuals” (ADA (a), (8)). individuals” (ADA (a), (8)).

Dependence, disability and dignityDependence, disability and dignity

The ADA legislation views the provision of The ADA legislation views the provision of care as most of us view our dependence on care as most of us view our dependence on farmers—instrumentally. For the most part, farmers—instrumentally. For the most part, however, we do not encounter the farmers however, we do not encounter the farmers that feed us. We need only pay a middleman that feed us. We need only pay a middleman who pays the farmer for the goods, yielding who pays the farmer for the goods, yielding an exchange between independent actors—an exchange between independent actors—often with middlemen—on par with other often with middlemen—on par with other exchanges in the marketplace. exchanges in the marketplace.

Dependence, disability and dignityDependence, disability and dignity

Providers of care, in contrast, have to co-exist with Providers of care, in contrast, have to co-exist with the individuals they care for; they exert direct the individuals they care for; they exert direct control over the minutiae of the life of their charge. control over the minutiae of the life of their charge. The “middlemen” in the provision of care are the The “middlemen” in the provision of care are the arbiters of whether and what kind of care is arbiters of whether and what kind of care is provided. provided.

The person in need of care is in their power with The person in need of care is in their power with respect to intimate details of life, aspects of respect to intimate details of life, aspects of existence we often do not share expect with those existence we often do not share expect with those closest to us. This is an imposition and intrusion closest to us. This is an imposition and intrusion can be oppressive and is often experienced as being can be oppressive and is often experienced as being at odds with dignity when it turns the disabled at odds with dignity when it turns the disabled person into a suppliant. person into a suppliant.

The norm of independenceThe norm of independence

The situation is worse still in a world where The situation is worse still in a world where independence is the norm of human independence is the norm of human functioning. To the degree that the functioning. To the degree that the impairment requires a carer for the disabled impairment requires a carer for the disabled person to live her life, care (and the carer) person to live her life, care (and the carer) is stigmatized by dependency. is stigmatized by dependency.

The stigma of dependencyThe stigma of dependency

It is to this stigmatized dependency that the British It is to this stigmatized dependency that the British Council of Organisations of Disabled People responds:Council of Organisations of Disabled People responds:

“ “[T]he need to be ‘looked after’ may well adequately [T]he need to be ‘looked after’ may well adequately describe the way potentially physically disabled describe the way potentially physically disabled candidates for ‘community care’ are perceived by candidates for ‘community care’ are perceived by people who are not disabled … which has led to large people who are not disabled … which has led to large numbers of us becoming passive recipients of a wide numbers of us becoming passive recipients of a wide range of professional and other interventions. But, range of professional and other interventions. But, however good passivity and the creation of however good passivity and the creation of dependency may be for the careers of service dependency may be for the careers of service providers, it is bad news for disabled people and the providers, it is bad news for disabled people and the public purse. public purse.

[(BCODP 1987: 3.2) cited in (Oliver 1989: 13)]. [(BCODP 1987: 3.2) cited in (Oliver 1989: 13)]. Note a capability theory can only be baffled by such a Note a capability theory can only be baffled by such a

view as the provision of such services seems to be view as the provision of such services seems to be exactly what would be called for. exactly what would be called for.

The stigma of dependency The stigma of dependency

Yet despite the achievement of the ADA itself and the Yet despite the achievement of the ADA itself and the opportunities it has opened, I believe there is much that is opportunities it has opened, I believe there is much that is problematic in an approach that extols independence as the problematic in an approach that extols independence as the route to a dignified life and sees dependence as a denigration route to a dignified life and sees dependence as a denigration of the person. of the person.

I worry that the emphasis on independence extols an I worry that the emphasis on independence extols an idealization that is idealization that is a mere fictiona mere fiction, not only for people with , not only for people with disability, but of us all. The emphasis on choice leaves out disability, but of us all. The emphasis on choice leaves out many people with disabilities for whom making choices is many people with disabilities for whom making choices is problematic as their cognitive function may be seriously problematic as their cognitive function may be seriously impaired. impaired.

And the denigration of care and dependency tends toward an And the denigration of care and dependency tends toward an attitude that makes the work and attitude that makes the work and value of the carers invisiblevalue of the carers invisible, , thus creating one oppression in the effort to alleviate another. thus creating one oppression in the effort to alleviate another.

Towards an Ethics of InclusionTowards an Ethics of Inclusion

Instead I want to suggest that those ethics of justiceInstead I want to suggest that those ethics of justice that put the autonomous individual at the forefront, that put the autonomous individual at the forefront, that eclipse the importance of our dependence on one that eclipse the importance of our dependence on one

another, andanother, and that make reciprocal exchanges between equals rather that make reciprocal exchanges between equals rather

than the attention to other’s needs the model of ethical than the attention to other’s needs the model of ethical interaction interaction

are not the ethics to be preferred in the construction are not the ethics to be preferred in the construction of an ethics of inclusion—at least not without the of an ethics of inclusion—at least not without the correction of an ethic of care.correction of an ethic of care.

Let me say parenthetically that a theory of justice based Let me say parenthetically that a theory of justice based on capabilities avoids some of these difficulties but does on capabilities avoids some of these difficulties but does not address dependency head-on and therefore I would not address dependency head-on and therefore I would argue still needs supplementation with an ethic of care.argue still needs supplementation with an ethic of care.

More specifically:More specifically: Can an ethic of care be relevant Can an ethic of care be relevant

to the development of an ethic to the development of an ethic of inclusion that persons with of inclusion that persons with disability may want to embrace?disability may want to embrace?

Situating my place in disabilitySituating my place in disability

In casting doubt on some central tenets of In casting doubt on some central tenets of disability theory, it is important to situate disability theory, it is important to situate myself in this discussion. It is first as a myself in this discussion. It is first as a parent that I have encountered the issue of parent that I have encountered the issue of disability. disability.

SeshaSesha


My daughter, is a sparkling young woman, with My daughter, is a sparkling young woman, with lovely disposition who is very significantly lovely disposition who is very significantly incapacitated, incapable of uttering speech, of incapacitated, incapable of uttering speech, of reading or writing, of walking without reading or writing, of walking without assistance, or in fact doing anything for herself assistance, or in fact doing anything for herself without assistance. without assistance.

She has mild cerebral palsy, severe intellectual She has mild cerebral palsy, severe intellectual disability, and seizure disorders. Although her disability, and seizure disorders. Although her cognitive functioning appears limited, she loves cognitive functioning appears limited, she loves music, bathing, good food, people, attention, music, bathing, good food, people, attention, and love. (Some of the finest things life has to and love. (Some of the finest things life has to offer.) offer.)


She is fully dependent and while, at the age of She is fully dependent and while, at the age of 40 she (like us all) is still capable of growth 40 she (like us all) is still capable of growth and development, it is quite certain that her and development, it is quite certain that her total dependence will not alter much. total dependence will not alter much.

I have been learning about disability from the I have been learning about disability from the perspective of one who is unable to speak for perspective of one who is unable to speak for herself; and it is from her and her caregivers herself; and it is from her and her caregivers that I have come to have a profound that I have come to have a profound appreciation of care as a practice and an ethic. appreciation of care as a practice and an ethic.


My daughter’s disabilities always threaten her with My daughter’s disabilities always threaten her with a life of diminished dignity. It is only with care, and a life of diminished dignity. It is only with care, and care of the highest quality, that she can be care of the highest quality, that she can be included, loved, and allowed to live a joyful and included, loved, and allowed to live a joyful and dignified life. dignified life.

When I speak of disability, I think a great deal When I speak of disability, I think a great deal about the cognitive disability that marks her life, about the cognitive disability that marks her life, and my concern is that persons with such and my concern is that persons with such disabilities, as well as her caregivers, not be left disabilities, as well as her caregivers, not be left out of considerations of justice and moral out of considerations of justice and moral personhood. personhood.


Coming to the question of disability from Coming to the question of disability from the position (or “role”) of a resolute carer the position (or “role”) of a resolute carer of a beloved disabled person, I am invested of a beloved disabled person, I am invested in the idea that in the idea that care is an indispensable, care is an indispensable, and even a central goodand even a central good—one without which —one without which a life of dignity is impossible and which is a life of dignity is impossible and which is itself an expression of a person’s dignity.itself an expression of a person’s dignity.

Care as a feature of a life Care as a feature of a life with dignitywith dignity

Elsewhere I go argue that the ability of a being to Elsewhere I go argue that the ability of a being to give and receive care is a source of dignity for give and receive care is a source of dignity for humans no less than the capacity for reason. humans no less than the capacity for reason.

Given that people with disabilities are attempting Given that people with disabilities are attempting to cast off the perception of the disabled individual to cast off the perception of the disabled individual as hapless, in need of “looking after”, and are as hapless, in need of “looking after”, and are working to retrieve independence in the face of working to retrieve independence in the face of practices and persons who reinforce and heighten practices and persons who reinforce and heighten the sense of dependence, the sense of dependence, can care be recuperated can care be recuperated as a valued and valuable concept? as a valued and valuable concept?

Three faces of CareThree faces of CareLabor , Attitude, and Labor , Attitude, and

VirtueVirtue The term “care” (in English) can denote a The term “care” (in English) can denote a

laborlabor, an , an attitudeattitude, or a , or a virtuevirtue. . As As laborlabor, it is the work of maintaining , it is the work of maintaining

others and ourselves when we are in a others and ourselves when we are in a condition of need. It requires skills on the condition of need. It requires skills on the part of the carer and uptake on the part of part of the carer and uptake on the part of the cared for. It is most noticed in its the cared for. It is most noticed in its absence, most appreciated when it can be absence, most appreciated when it can be least reciprocated. least reciprocated.

Care as attitudeCare as attitude

As an As an attitudeattitude, caring denotes a positive, , caring denotes a positive, affective bond and investment in another’s well-affective bond and investment in another’s well-being. The labor can be done without the being. The labor can be done without the appropriate attitude. appropriate attitude.

Yet without the attitude of care, the open Yet without the attitude of care, the open responsiveness to another that is so essential to responsiveness to another that is so essential to understanding what another requires is not understanding what another requires is not possible.possible.

That is, the labor unaccompanied by the attitude That is, the labor unaccompanied by the attitude of care will not be good care (see Kittay 1999). of care will not be good care (see Kittay 1999).

Care as a virtue Care as a virtue

Care, as a Care, as a virtuevirtue, is a disposition manifested in , is a disposition manifested in caring behavior (the labor and attitude) in which:caring behavior (the labor and attitude) in which:

“ “a shift takes place from the interest in our life a shift takes place from the interest in our life situation to the situation of the other, the one in need situation to the situation of the other, the one in need of care” of care”

(Gastmans, Dierckx de Casterlé and Schotsmans 1998: 53). (Gastmans, Dierckx de Casterlé and Schotsmans 1998: 53).

Relations of affection facilitate care, but the Relations of affection facilitate care, but the disposition can be directed at strangers as well as disposition can be directed at strangers as well as intimates. intimates.

Features of an Ethic of Features of an Ethic of CareCare

An ethic of care develops and refines the An ethic of care develops and refines the normative characteristics in the labor, the normative characteristics in the labor, the attitude and the disposition. Most important attitude and the disposition. Most important for our purposes are the following ideas:for our purposes are the following ideas: The moral subjectThe moral subject The nature of moral relationsThe nature of moral relations The nature of moral deliberationThe nature of moral deliberation The scope of moral actionThe scope of moral action The notion of harm and the aim of moral actionsThe notion of harm and the aim of moral actions

Moral Subjects/Moral Moral Subjects/Moral RelationsRelations

The The moral subjectmoral subject is conceived as a is conceived as a relational relational selfself, one that is constituted in part by , one that is constituted in part by relationships important to a person’s identity. relationships important to a person’s identity. Among these are relations of dependence. Among these are relations of dependence.

Moral relationsMoral relations occur not only between equals occur not only between equals (who have voluntarily entered that (who have voluntarily entered that relationship), but also among those relationship), but also among those not not equally situated or empoweredequally situated or empowered, individuals , individuals who find themselves rather than chose these who find themselves rather than chose these relationships, as children find themselves in relationships, as children find themselves in relation to parents they have not chosen. relation to parents they have not chosen.

Moral Deliberation and Moral Deliberation and Scope of Moral ActionScope of Moral Action

Moral deliberationMoral deliberation requires not reason alone, requires not reason alone, but also empathy, emotional responsiveness, but also empathy, emotional responsiveness, and perceptual attentiveness. and perceptual attentiveness.

Although an ethic of care is often thought to Although an ethic of care is often thought to be limited in its be limited in its moral scopemoral scope, confined to , confined to intimate settings, it can tread in areas intimate settings, it can tread in areas usually occupied by justice as well, especially usually occupied by justice as well, especially where practices of justice are inadequate to where practices of justice are inadequate to cover the contextual and narrative cover the contextual and narrative complexities of the situation. complexities of the situation.

Moral Harm and Aim of Moral Harm and Aim of Moral ActionMoral Action

Finally, Finally, moral harmmoral harm is understood to be less is understood to be less a matter of the violation of rights, and more a matter of the violation of rights, and more the consequence of failures in responsibility the consequence of failures in responsibility and responsiveness. Not the clash of and responsiveness. Not the clash of interests but the severing of valued interests but the severing of valued connections is the harm an ethics of care connections is the harm an ethics of care attempts to avoid. As such, aims at an attempts to avoid. As such, aims at an ethics of inclusion, including all within a ethics of inclusion, including all within a network of valued members.network of valued members.

Finding the Strengths in Finding the Strengths in a Care Ethics in its a Care Ethics in its

Alleged Weaknesses Alleged Weaknesses

Yet care-based ethics has been subject to criticisms Yet care-based ethics has been subject to criticisms that would render it unsuitable for an ethic of that would render it unsuitable for an ethic of inclusion. inclusion.

FirstFirst, as feminists have commented, if the model of , as feminists have commented, if the model of caring relations is work that women have caring relations is work that women have traditionally been expected to do, work that has traditionally been expected to do, work that has been part of their subjugation, then should we not been part of their subjugation, then should we not say that an ethics based on say that an ethics based on caring labor is a “slave caring labor is a “slave moralitymorality” as Nietzsche would have it”? Can a group, ” as Nietzsche would have it”? Can a group, such as disabled persons, struggling to emerge from such as disabled persons, struggling to emerge from a subordinate status, usefully adopt it? a subordinate status, usefully adopt it?


Alleged Weaknesses Alleged Weaknesses SecondSecond, care, has been taken to be too , care, has been taken to be too

closely tied to the very image of closely tied to the very image of dependency that disabled people have in dependency that disabled people have in large measure tried to shed. Dependency large measure tried to shed. Dependency implies implies power inequalities power inequalities and a care-based and a care-based ethics appears to embrace rather than ethics appears to embrace rather than challenge these inequalities. challenge these inequalities.


Alleged Weaknesses Alleged Weaknesses ThirdThird, a care-based ethic, it has been argued , a care-based ethic, it has been argued

really is only suited to the private domaireally is only suited to the private domain. If n. If this is right then when applied to the situation this is right then when applied to the situation of disability it would appear to favor the more of disability it would appear to favor the more individual, medical model of disability and individual, medical model of disability and cannot address the structural problems that a cannot address the structural problems that a social model of disability highlights. social model of disability highlights.

I want to argue that these very critiques in I want to argue that these very critiques in fact point to what is so valuable about an fact point to what is so valuable about an ethic of care for issues of disability. ethic of care for issues of disability.

Care ethics as a “slave Care ethics as a “slave morality” morality”

To the charge that a care ethics is a “slave To the charge that a care ethics is a “slave morality” we can reply that an ethic that morality” we can reply that an ethic that springs the labor of subjugated persons springs the labor of subjugated persons reveals that the subordinated do have a voice. reveals that the subordinated do have a voice.

It needs to be heard because it can reveal It needs to be heard because it can reveal value where none was previously value where none was previously acknowledged. It may prevent newly acknowledged. It may prevent newly empowered people from colluding with the empowered people from colluding with the very values that previously were used in their very values that previously were used in their own subjection. own subjection.


For example, in extolling independence for physically For example, in extolling independence for physically disabled people, we can inadvertently fall into disabled people, we can inadvertently fall into morally questionable habits that mimic those of morally questionable habits that mimic those of privileged groups. When Heuman insists that privileged groups. When Heuman insists that independence is a mind thing, not a body thingindependence is a mind thing, not a body thing, we , we still need to ask: still need to ask:

What about those who do the body things: the What about those who do the body things: the washing, dressing, toileting? washing, dressing, toileting?

Where is the independence and control of the Where is the independence and control of the persons providing care (the “moral proletariat” as persons providing care (the “moral proletariat” as Annette Baier has called them) when they are mere Annette Baier has called them) when they are mere instruments of another’s independence and control? instruments of another’s independence and control?

(Also see my discussion of Olmstead v. L. C. and E. W. in (Also see my discussion of Olmstead v. L. C. and E. W. in Kittay 2000). Kittay 2000).


Is it not better to acknowledge our dependency Is it not better to acknowledge our dependency as a feature of all human life, and to develop as a feature of all human life, and to develop relationships that are genuinely caring and relationships that are genuinely caring and respectful. respectful.

Is it not better for relationships of dependency Is it not better for relationships of dependency be replete with affective bonds that can be replete with affective bonds that can transform otherwise unpleasant intimate tasks transform otherwise unpleasant intimate tasks into times of trust, and demonstrations of into times of trust, and demonstrations of trustworthiness, gratifying and dignifying to trustworthiness, gratifying and dignifying to both the caregiver and the recipient of care. both the caregiver and the recipient of care.

Is it not preferable to understand relationships of Is it not preferable to understand relationships of care to be genuine relationships involving labor care to be genuine relationships involving labor that is due just compensation and recognition.that is due just compensation and recognition.


If we conceive of If we conceive of allall persons as moving in persons as moving in and out of relationships of dependence and out of relationships of dependence through different life-stages and conditions through different life-stages and conditions of health and functionings, the fact that the of health and functionings, the fact that the disabled person requires the assistance of a disabled person requires the assistance of a caregiver is not the exception, the special caregiver is not the exception, the special case. The disabled person occupies what is case. The disabled person occupies what is surely a moment in each of our lives, a surely a moment in each of our lives, a possibility that is inherent in being human. possibility that is inherent in being human.


From this perspective we reason that our societies From this perspective we reason that our societies should be structured to accommodate inevitable should be structured to accommodate inevitable dependency within a dignified, flourishing life—dependency within a dignified, flourishing life—both for the cared for and for the carer. both for the cared for and for the carer.

Finally, if we see ourselves as always selves-in-Finally, if we see ourselves as always selves-in-relation, we understand that our own sense of relation, we understand that our own sense of well-being is tied to the adequate care and well-well-being is tied to the adequate care and well-being of another. Caregiving work is the realization being of another. Caregiving work is the realization of this conception of self, both when we give care of this conception of self, both when we give care generously and when we receive it graciously. generously and when we receive it graciously.

Relations of care as Relations of care as relations among unequalsrelations among unequals Critics of care ethics have pointed out that Critics of care ethics have pointed out that

the oft used paradigm is the mother and the oft used paradigm is the mother and child relation, which is arguably not a child relation, which is arguably not a suitable model for relationships between suitable model for relationships between disabled adults and care providers. disabled adults and care providers.

But we are not always equals even when But we are not always equals even when adults—we are not equally situated or adults—we are not equally situated or empowered when we are ill or incapacitated empowered when we are ill or incapacitated or faced with “experts” with greater or faced with “experts” with greater knowledge and power. knowledge and power.

Relations of care as Relations of care as relations among unequalsrelations among unequals Baier addressing the limitations of a rights Baier addressing the limitations of a rights

approach to morality speaks of the sham in approach to morality speaks of the sham in the the “’“’promotion’ of the weaker so that an promotion’ of the weaker so that an

appearance of virtual equality is achieved … appearance of virtual equality is achieved … children are treated as adults-to-be, the ill children are treated as adults-to-be, the ill and dying are treated as continuers of their and dying are treated as continuers of their earlier more potent selves … ” earlier more potent selves … ”

Relations of care as Relations of care as relations among unequalsrelations among unequals She remarks,She remarks,

“ “This pretence of an equality that is, in fact, This pretence of an equality that is, in fact, absent may often lead to a desirable absent may often lead to a desirable protection of the weaker or more dependent. protection of the weaker or more dependent. But it somewhat masks the question of what But it somewhat masks the question of what our moral relationships our moral relationships are are to those who are to those who are our superiors or our inferiors in power” (1995: our superiors or our inferiors in power” (1995: 55). 55).

Relations of care as Relations of care as relations among unequalsrelations among unequals She goes on to suggest that a morality that She goes on to suggest that a morality that

invokes this pretense of equality and invokes this pretense of equality and independence, if not supplemented, may independence, if not supplemented, may well “unfit people to be anything other than well “unfit people to be anything other than what its justifying theories suppose them to what its justifying theories suppose them to be, ones who have no interest in each be, ones who have no interest in each others’ interests” (1995).others’ interests” (1995).

That is, it may leave us without adequate That is, it may leave us without adequate moral resources to deal with genuine moral resources to deal with genuine inequalities of power and situation. inequalities of power and situation.

Relations of care as Relations of care as relations among unequalsrelations among unequals The urgencies of need, whether they arise The urgencies of need, whether they arise

from medical emergencies, a breakdown in from medical emergencies, a breakdown in equipment needed for functioning, disabling equipment needed for functioning, disabling conditions not addressable by conditions not addressable by accommodation, are ones that render accommodation, are ones that render disabled persons, (disabled persons, (and and often carers whose often carers whose own welfare is tied to that of the person for own welfare is tied to that of the person for whom they care) vulnerable. whom they care) vulnerable.

Relations of care as Relations of care as relations among unequalsrelations among unequals We need an ethic that can also help guide We need an ethic that can also help guide

relationships between different sorts of care relationships between different sorts of care providers (family members, hands-on care providers (family members, hands-on care assistants, medical personal) and people with assistants, medical personal) and people with different sort of care needs. different sort of care needs.

Paternalism is the only alternative to autonomy Paternalism is the only alternative to autonomy when autonomy is the norm of all human when autonomy is the norm of all human interaction.interaction.

Cooperative, respectful, attentive relations are Cooperative, respectful, attentive relations are alternative responses to paternalistic ones toward alternative responses to paternalistic ones toward those who depend on us in times of need.those who depend on us in times of need.

Relations of care as Relations of care as relations among unequalsrelations among unequals A final point bears on issues of distributive justice. A final point bears on issues of distributive justice.

In a model where equal parties participate in a fair In a model where equal parties participate in a fair system of social cooperation, the ruling system of social cooperation, the ruling conceptions are:conceptions are: reciprocity,reciprocity, a level playing field, a level playing field, and fair equality of opportunity. and fair equality of opportunity.

On the assumption that all are equally situated On the assumption that all are equally situated and empowered, a conception of negative rights and empowered, a conception of negative rights goes a long way to permit individuals to realize goes a long way to permit individuals to realize their own good.their own good.

Relations of care as Relations of care as relations among unequalsrelations among unequals But differences in powers and situation require a But differences in powers and situation require a

more positive conception of rights and more positive conception of rights and responsibilities toward those less well-situated responsibilities toward those less well-situated or empowered. or empowered.

Positive provisions are critical for people with Positive provisions are critical for people with disabilities to flourish and an ethic of care disabilities to flourish and an ethic of care provides a strong justification for such provisions provides a strong justification for such provisions as entitlements insofar as care requires carrying as entitlements insofar as care requires carrying out responsibilities we have for another’s out responsibilities we have for another’s flourishing, whatever that may require.flourishing, whatever that may require. (Capability theory also serves here as a (Capability theory also serves here as a

justification for positive rights.) justification for positive rights.)

Relations of care as Relations of care as relations among unequalsrelations among unequals Ensuring equal opportunity to people is Ensuring equal opportunity to people is

admirable when people are in a position to admirable when people are in a position to take advantage of the opportunities on offer, take advantage of the opportunities on offer, but some who are disabled are not in this but some who are disabled are not in this position. position.

For persons with severe mental retardations, For persons with severe mental retardations, such as my daughter Sesha, no such as my daughter Sesha, no accommodations, antidiscrimination laws, or accommodations, antidiscrimination laws, or guarantees of equal opportunity can make guarantees of equal opportunity can make her self-supporting and independent. her self-supporting and independent.

Relations of care as Relations of care as relations among unequalsrelations among unequals Even those less disabled require the positive Even those less disabled require the positive

provision of:provision of: attendants, attendants, equipment, equipment, appropriate housing, appropriate housing, specialized vans, etc.specialized vans, etc. and an attitude of care and concern in meeting and an attitude of care and concern in meeting

whatever needs arise. whatever needs arise. An ethic of care requires that what is offered can An ethic of care requires that what is offered can

be taken up by the person cared for. Unless the be taken up by the person cared for. Unless the provisions are appropriate, they are not care.provisions are appropriate, they are not care.

Taking care ethics Taking care ethics publpublicic

That the distribution of public resources can be a That the distribution of public resources can be a matter of care counters the notion that a care ethics is matter of care counters the notion that a care ethics is suited only for the private sphere of intimate relations suited only for the private sphere of intimate relations and not for public policy. and not for public policy.

Many have already addressed the different ways the Many have already addressed the different ways the scope of care extends beyond intimate relations. scope of care extends beyond intimate relations. Joan Tronto (1989), Joan Tronto (1989), Sarah Ruddick (2001); Sarah Ruddick (2001); Michael Slote (1987) ; Virginia Held; Michael Slote (1987) ; Virginia Held; Nel Noddings, among others,Nel Noddings, among others,

Each invites us to imagine what a society that Each invites us to imagine what a society that governed social policy on a care paradigm might governed social policy on a care paradigm might actually look like. actually look like.

Taking care ethics Taking care ethics publpublicic

The virtues that guide care in intimate spheres can The virtues that guide care in intimate spheres can introduce new values into the public domain. introduce new values into the public domain.

I have argued for a public ethic of care based on I have argued for a public ethic of care based on the idea that we are all embedded in the idea that we are all embedded in nested nested dependenciesdependencies. .

It is the obligation and responsibility of the larger It is the obligation and responsibility of the larger society to enable and support relations of society to enable and support relations of dependency work that takes place in the more dependency work that takes place in the more intimate settings, for that is the point and purpose intimate settings, for that is the point and purpose of social organization—or at least a major one. of social organization—or at least a major one.

““The Virtues of The Virtues of Acknowledged Acknowledged Dependence” Dependence”

Rather than see the emphasis on dependence and Rather than see the emphasis on dependence and connection as limitations, I have suggested that connection as limitations, I have suggested that we see the emphasis of these in a care ethics as we see the emphasis of these in a care ethics as resources. resources.

Carol Gilligan, citing two definitions of dependency Carol Gilligan, citing two definitions of dependency offered by high-school girls she studied. offered by high-school girls she studied.

One arises, “from the opposition between One arises, “from the opposition between dependence and independence, and the other from dependence and independence, and the other from the opposition of dependence to isolation” (1987: the opposition of dependence to isolation” (1987: 31–32).31–32).


By placing these two contrasting By placing these two contrasting definitions of dependence side by side, we definitions of dependence side by side, we see that the dominance of an ideology of see that the dominance of an ideology of independence will eclipse the positive independence will eclipse the positive experience of connectedness we can experience of connectedness we can experience through dependence. experience through dependence.


Acknowledging the inevitable dependency Acknowledging the inevitable dependency of certain forms of disability and setting of certain forms of disability and setting them in the context of inevitable them in the context of inevitable dependencies of all sorts, is another way to dependencies of all sorts, is another way to reintegrate disability into the species normreintegrate disability into the species norm, , for it is part of our species typicality to be for it is part of our species typicality to be vulnerable to disability, to have periods of vulnerable to disability, to have periods of dependency, and to be responsible to care dependency, and to be responsible to care for dependent individuals. for dependent individuals.


We as a species are nearly unique in the extent to We as a species are nearly unique in the extent to which we attend to dependency, most likely because which we attend to dependency, most likely because we experience the long dependency of youth.we experience the long dependency of youth.

When we recognize that dependency is an aspect of When we recognize that dependency is an aspect of what it is to be the sorts of beings we are, we, as a what it is to be the sorts of beings we are, we, as a society, can begin to confront our fear and loathing society, can begin to confront our fear and loathing of dependency and with it, of disability. of dependency and with it, of disability.

When we acknowledge how dependence on another When we acknowledge how dependence on another saves us from isolation and provides the connections saves us from isolation and provides the connections to another that makes life worthwhile, we can start to another that makes life worthwhile, we can start the process of embracing needed dependencies. the process of embracing needed dependencies.


The incredulity of the interviewer was The incredulity of the interviewer was palpable. palpable.

Then Pryor explained that he had lived a life Then Pryor explained that he had lived a life in which he had felt he could never trust in which he had felt he could never trust anyone. When, in order to walk from one anyone. When, in order to walk from one end of a room to the other, end of a room to the other, a person a person must must depend on anotherdepend on another, he learned how to trust , he learned how to trust for the first time in his life; this, he replied for the first time in his life; this, he replied was was the best thing the best thing that ever happened to that ever happened to him.him.


The trust that Pryor had to learn when he became The trust that Pryor had to learn when he became disabled – and the need for trustworthiness that disabled – and the need for trustworthiness that warrants such trust – ought to be a feature of all warrants such trust – ought to be a feature of all our lives. Dependence may, in various ways be our lives. Dependence may, in various ways be socially constructed, and unjust and oppressive socially constructed, and unjust and oppressive institutions and practices create many sorts of institutions and practices create many sorts of dependence that are unnecessary and stultifying. dependence that are unnecessary and stultifying.

But if dependency is constructed, independence But if dependency is constructed, independence is still more constructed.is still more constructed.


We cannot turn away from that fact and sufficiently We cannot turn away from that fact and sufficiently rid ourselves of prejudices against disability. Recall rid ourselves of prejudices against disability. Recall that the last finding that prefaces the ADA reads:that the last finding that prefaces the ADA reads: “ “[T]he continuing existence of unfair and [T]he continuing existence of unfair and

unnecessary discrimination and prejudice … costs the unnecessary discrimination and prejudice … costs the United States billions of dollars in unnecessary United States billions of dollars in unnecessary expenses resulting from dependency and expenses resulting from dependency and nonproductivity.” (ADA (a)(9)). nonproductivity.” (ADA (a)(9)).

The independence touted is advanced as a cost-The independence touted is advanced as a cost-saving, not as a commitment to the flourishing of saving, not as a commitment to the flourishing of each disabled person.each disabled person.


I have received from my daughter Sesha a I have received from my daughter Sesha a knowledge of, as Alasdair MacIntyre puts it, knowledge of, as Alasdair MacIntyre puts it, “the virtues of acknowledged dependency” “the virtues of acknowledged dependency” and of the extraordinary possibilities and of the extraordinary possibilities inherent in relationships of care toward one inherent in relationships of care toward one who reciprocates, but not in the same coin; who reciprocates, but not in the same coin; one who cannot be independent, but makes one who cannot be independent, but makes a gift of her joy and her love.a gift of her joy and her love.

disability, dependence, dignity and care

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