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Health Policy Watch: Ethical Obligations in the Body Politic: The Case of Normalization Policy for Marginal Populations

Published online by Cambridge University Press:  29 July 2009

Joseph C. d'Oronzio
Joseph C. d'Oronzio
Affiliation:
is Assistant Clinical Professor in Health Policy and Management, Columbia University School of Public Health, and provides bioethics training and consultation services in several New Jersey teaching hospitals.
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Extract

A common tale of moral cacophony and euphemism on the city streets:

Each day, an owner of a small business decides, “once and for all,” how to respond to the “homeless person” panhandling for “spare change” as she makes her way to work in the morning. Today, she looks the other way and holds more tightly to her purse. Nearby, a building contractor waits impatiently for the traffic light to change as his van is approached by a small and shabby band of “street people” demanding to clean his windshield. He turns his wipers on to signal them away. Sometimes this works. At the next light, a woman carrying an infant swaddled to her torso offers a tube of three roses for a dollar. The driver smiles pleasantly, but does not stop. The businesswoman, now close to work, buys two tubes of roses and does not wait for the change from the five-dollar bill she earnestly presses into the mother's hand.

Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 6 , Issue 4 , Fall 1997 , pp. 480 - 493
Copyright
Copyright © Cambridge University Press 1997

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References

1. I will use the terms ‘(persons with) intellectual disability’ and ‘mental handicap’ interchangeably, while occasionally abbreviating them to ‘handicap’ and ‘disability’ or ‘the handicapped’ and ‘the disabled.’

2. Goffman, E. Asylums: Essays on the Social Situations of Mental Patients and Other Inmates. Harmondsworth Middlesex, England: Penguin Books Ltd., 1978.Google Scholar

3. Already a century ago the advocates of the mentally handicapped confronted society with its own standards. For example Samuel Gridley Howe, who claimed that ‘even idiots have rights which should be carefully considered’ (quoted from Herr, SS. Rights and Advocacy for Retarded People. Lexington, Massachusetts: Lexington Books. D.C. Heath and Company, 1983:28).Google Scholar

4. Herr documented in his study the struggle for legal reform in the U.S. He shows that it has been mainly due to the judicial action of the federal courts that states have been forced to acknowledge the rights of disabled citizens (see note 3, Herr. 107ff.;235ff. passim).

5. Wolfensberger, W. The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation, 1972:28.Google Scholar

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7. See Emerson, E. What is normalization? In: Brown, H, Smith, H, eds. Normalization-A Reader for the Nineties, London: Tavistock and Routledge, 1992:9.Google Scholar

8. See note 5, Wolfensberger, 1972:48Google Scholar. For a thoughtful critique of Wolfensberger's social role valorization, see Dalley, G. Social welfare ideologies and normalisation. In: Brown, H, Smith, H, eds. Normalization-A Reader for the Nineties. London: Tavistock and Routledge, 1989:100–11Google Scholar. Dalley argues that Wolfensberger tends toward social conservatism in that he focuses on roles rather than persons (101–102). For a similar critique on the earlier version of the theory, see Briton, J. Normalization: what of and what for? Australian journal of Mental Retardation 1979;5:224–9.CrossRefGoogle Scholar

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12. The occurrence of this kind of situation is not documented for the Netherlands in the literature, but I am told that bringing disabled into the community effectively often means to move their homes.

13. See note 10, Wright, 1994:111.Google Scholar

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18. It may be questioned empirically whether people cannot succeed in developing selfesteem despite-or even due to-the lack of cultural recognition. People within the deaf community may present a case in point. They appear to find strength in isolation, as members of cultural minority groups often succeed in doing (e.g., members of the gay community). But it seems to me that this possibility depends precisely on a strong sense of being accepted and respected among one's peers.

19. There is, of course, literature on improvements in living conditions and individual performance in ‘deinstitutionalized’ settings, but the issue here regards informal interaction between handicapped and nonhandicapped residents in communal settings. On that issue no research was found.

20. Tøssebro puts the point this way: “Many of the intentions of the reform were beyond politics. It is possible to decide politically that a new house of a certain quality is to be built. It is not that easy to decide that your neighbour is going to be your friend.” See note 9, Tossebro, 1996:8.Google Scholar

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22. Writing about the United States, Stanley Herr states that “In a nation in which human solidarity is too often a frail bond, the appeal for legal protection can be a search of refuge…. Resort to the judicial process occurred not because judges, let alone lawyers, are more nurturing or benevolent than their fellow citizens. It happened because the vindication of legal rights hinges on principles and precedents, not on market forces or political arenas” (see note 3, Herr, 1983: 249).Google Scholar

23. Quoted from: Scheerenberger, RC. A History of Mental Retardation. A Quarter Century of Promise. Baltimore and London: Paul H. Brookes Publishing Company, 1987:126–7.Google Scholar

24. See note 3, Herr, 1983:247Google Scholar. In rebuking benevolence, good intentions, and charity, Herr in particular refers to the negative consequences when these virtues are transformed into governmental powers without adequate legal control (Herr, 1983:237–8).Google Scholar

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27. I am not objecting here against professionalism as Wolfensberger apparently does where he argues that formal aspects of professionalism-such as payment-are in themselves an impediment to normal relationships between staff and users of services (Wolfensberger, W. How to Function with Personal Moral Coherence in a Dysfunctional (Human Service) World. New York: Training Institute for Human Service Planning and Change Agentry, Syracuse University, 1989Google Scholar). For a critique of this view: Smith H, Brown H. Inside-out. A psychodynamic approach to normalization. In: Brown, & Smith, , eds., Normalization-A Reader for the Nineties. London: Tavistock and Routledge, 1989:85–99; 94. The authors argue, quite rightly in my view, that these formal aspects also have a protective function both to the staff and to users of services. The point I am making is not to ‘informalize’ institutional services, but to support and facilitate informal caring relationships outside institutionalized professional structures.Google Scholar