Personal relationships and third-party assistance

Disability theorists and activists reject the assumption that disabilities pose unique difficulties for personal relationships on the grounds that this assumption reflects an overly narrow view of the mutuality required in an intimate relationship. That said, not all persons with and without disabilities have the same views about possibility of combining intimacy with disability-specific personal assistance. To accommodate these differences, some theorists and activists have argued for options that separate instrumental assistance from close relationships. These options involve providing by paid staff for personal assistance in cases where this helps to preserve the mutuality, sharing, and interdependence of friendships, partner relations, and family life (Litvak et al. 1987; Asch 1993; Ratzka 2004). There is much to be said in favor of making third-party assistance available. The lack of education and training of family members in meeting a person’s disability-related needs, the societal treatment of these needs as different from and more shameful than other needs, and the scarcity and inaccessibility of other supportive services for meeting these needs, can indeed place enormous strain on intimate relationships between nondisabled and disabled persons. Further, the constant reliance upon intimates for assistance with travel, communication, or preparation for work or school may thwart the desires of persons with disabilities to select what they wear, when they come and go, or with whom they associate in their free time. The idea of an entitlement to state-subsidized personal assistance has been developed on a policy level by Litvak, Heumann, and Zukas (1987), Adolf Ratzka (2004), and Americans Disabled For Attendant Programs Today (ADAPT).
It might be thought that the argument for state-subsidized personal assistance undermines the claim that disability does not pose any general barriers to intimacy. Those arguing that the state should subsidize personal assistance for people with disabilities might seem to share the assumption of Callahan (1988) and Wertz and Fletcher (1993) that disability-related needs differ in kind as well as in degree from other material and emotional needs for which state-subsidized assistance is not defended.
Disability advocates would reject this conclusion for at least two reasons. First, it is the stigmatization of disability-related needs, more than the actual cost of meeting them, which serves as a barrier to intimacy. The stigmatization of disability-related needs creates an aversion to meeting those needs and a tendency to exaggerate the costs of doing so. There is an inclination to see meeting those needs as falling outside the scope of an intimate relationship, when meeting relevantly similar needs of a nondisabled relative are seen as part and parcel of intimate relating. By subsidizing personal assistance, the state helps to overcome the exclusionary effects of deeply entrenched social attitudes that pose a barrier to intimacy. If these attitudes change so that the dominant culture does not find it shameful to have disability-specific needs and distasteful to meet them, there might well be less need for personal assistance programs. The remaining need for personal assistance would not sharply distinguish persons with disabilities from friends and intimates who also call upon each other for various forms of assistance.
Second, the fact that some people with disabilities require more assistance than most nondisabled people to achieve their life goals does not mean that disabilities must pose a barrier to intimacy. Intimate relationships often impose special demands on participants unrelated to disability. An individual with expensive projects or commitments may cost significantly more to befriend or marry, but unless those projects and commitments are extravagant or all-consuming, we would not see them as a general barrier to intimacy. Likewise, even in an Internet age, it may be more costly to maintain friendships with people who live in remote areas. Yet we tend to see those costs as incidental to the relationships we form, even if they limit them in ways we may regret (Amundson 2005).
A state-subsidized personal assistance response to disability-related needs is not welcomed by all disability theorists and activists. Wendell (1989, 1996) sees people with disabilities, in their dependence, as having lessons to teach nondisabled people about human interdependence. Similarly, Eva Kittay has argued for the importance of kinship caregiving. Kittay stresses the importance of a loving and “sustaining” relationship between the caregiver and the care-recipient, which may be absent when care is professionally outsourced. Moreover, family caregivers are more likely to maintain trusting and long-lasting relationships, as opposed to professional caregivers, who may come and go. Furthermore, Kittay stresses the significance of including disabled people in familial and cultural activities rather than relegating them to paid caregivers, although it is not clear why having a paid assistant is inimical to participating in familial and communal activities (Kittay 2003). (See also Longmore 1995 and Levine 2004.).
These arguments about the value of kinship caregiving do not undermine the case for making professional caregiving relationships a dignified and economically viable option. There are many families ill-equipped or poorly disposed to adopt that option. But there are also many circumstances in which the differentiation of personal assistant from parent, spouse, or friend will give the person with a disability the freedom and privacy that nondisabled people take for granted. In circumstances where kinship assistance would strain rather than enhance intimate relationships between family members, it seems clear that third-party assistance should at least be made available as an option, even if it is not encouraged across-the-board.
Subsidizing third-party assistance is a means by which the state can help to create the conditions for the flourishing of positive relationships. The provision of paid third-party assistance is not intended to force the separation of instrumental help from close relationships, but to give friends and family members the freedom to decide how much of such assistance they want to incorporate into their relationships. Friends and family members may be entirely comfortable meeting someone’s disability-specific needs, just as they are prepared to meet other needs of the people with whom they have intimate relationships (Asch 1993). In other cases, and with respect to other needs, they may not. Close relationships are not all of a piece, and persons with disabilities, their friends, family members, and lovers should be able to determine for themselves what kind of relationship they will have and what role there is in it for third-party assistance.

4. Conclusion

Having separately discussed well-being, health, and personal relationship, the Entry concludes by considering the links among these three domains, as they pertain to disability.
On most plausible accounts of well-being, health and personal relationships are either instrumentally conducive to well-being or partially constitutive of it. An account of well-being which entailed that health and personal relationships were not important means to or constituents of well-being would be prima facie implausible. Consequently, an account of health entailing that persons with disabilities are necessarily unhealthy, or an account of personal relationships entailing that persons with disabilities cannot enjoy many of the goods of those relationships, will also have the implication that persons with disabilities cannot attain the same level of well-being as able-bodied persons absent compensating capacities or achievements in other domains.
Many laypersons, policymakers, and philosophers implicitly or explicitly adopt theories of health and personal relationships with this implication. But there are plausible accounts of health and personal relationships which do not entail that disability is inimical to well-being. And on most plausible accounts of well-being, disability need not present a formidable barrier to living a good life. This is so on appropriately pluralistic, flexible and broadly-framed objective-list accounts as well as on subjective accounts. A blind or deaf person cannot exercise all five senses. But there are plausible arguments for the conclusion that they can have lives with rich aesthetic experience, pleasure, and joy.
We suggest that the difficulty in appreciating that people with disabilities may have lives as good as those of people without disabilities, objectively as well as subjectively, may arise in part from a failure of imagination by nondisabled people. A body of empirical research indicates that people without disabilities rate the subjective well-being of people with disabilities far lower than they rate it themselves. (Albrecht and Devlieger 1999; Gill 2000; Goering 2008). If all persons enjoy a defeasible presumption of epistemic authority with respect to the quality of their experiences, this divergence suggests that the widely shared assumption that disabilities reduce quality of life should be regarded as controversial, not self-evident. Although we have no empirical research to support us, we suspect the same is true for the divergent assessments of the prospects for objective well-being of people with disabilities. Non-disabled people may have greater difficulty imagining how people with disabilities can enjoy or develop the capabilities for the various constituents of objective well-being, particularly those concerning health and personal relationships.
This highlights a broader point connecting all three domains, as well as the relationship between philosophy and disability more generally. Most philosophical discussions of disability have implicitly assumed the perspective of persons who do not have a disability. They have asked whether other people, the people with disabilities, have lower levels of well-being; whether other people, the people with disabilities, are less healthy; whether other people, the people with disabilities, will pose a comparatively higher burden as friends or intimates. In much recent work in political philosophy, disability has figured most prominently as a paradigm example of bad luck, and the question is whether and to what extent we the able-bodied should compensate disabled others for their misfortune (see SEP entry on disability and justice). By implicitly adopting the perspective of nondisabled persons, from which persons with disabilities appear only in the third-person, much mainstream work in philosophy has failed to take seriously the perspectives of persons with disabilities—even when those perspectives are directly relevant to the conceptual question under discussion: what is the nature of well-being, or friendship, or health? We hope that this entry can be a point of departure for a discussion of these concepts that takes into account a wider range of relevant considered judgments, intuitions, and perspectives.

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Personal relationships and third-party assistance

4. Conclusion

Personal relationships and third-party assistance :: تعاليق

Personal relationships and third-party assistance

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