HEALTH ETHICS TODAY

Volume 12, Number 1, Fall/November 2001

Prescribing Multi-Functionalism to Achieve Equality in a World of Difference

Anita Silvers, PhD
Professor of Philosophy
San Francisco State University

Suppose we were starting out anew to build a social system that delivers health care fairly. Are there policies we should prescribe, or presumptions we should prohibit, so that the system respects people equally and treats them as so?

The simplest approach would be to serve everyone alike. Some philosophers have argued that justice is promoted by intervening to assure that all people alike have health. As a Canadian Government document puts it: "Health is thus envisaged as a resource which gives people the ability to manage and even to change their surroundings" (Canadian Department of National Health and Welfare. 1984. quoted in Young, 1998, 2). Health is an important democratic value because people who lack it have difficulty putting equal opportunity to good use (Daniels, 2002). So democratic systems should try to secure species-typical health as a baseline for everybody alike, through preventative, therapeutic, and rehabilitative medical care. This way of thinking makes health a social as well as a personal good.

Privileging the Species-typical Majority
What of people whose biological anomalies mean they cannot attain species-typical health? It is all too easy to slide from identifying health as a social good to characterizing people unable to attain species-typical health as depleting social goods. People with chronic health limitations then are imagined to consume health care resources immoderately, and to be burdensome to the general society, and to themselves as well.

According to this way of thinking about justice and health care, the preeminent recipients of health care resources should be individuals who can maintain species-typical functioning. In other words, priority should go to individuals with sufficient health to contribute to making society stable and productive. Patients who cannot achieve this level of functioning have only marginal claims on medical intervention, which is better used to create the healthiest possible population. (Patrick and Erickson 1993). Even if disabled and chronically ill people don't get the health care resources they need, they are imagined to be better off in a vigorously healthy population whose surplus productivity can sustain them.

What complicates this picture, however, is that making species-typical functioning a policy goal tends to devalue whoever cannot meet this standard. In such a system, biologically anomalous individuals are seen as "others" whose poor fit with the social environment both explains and justifies their reduced opportunity. (Silvers, 1998) Policies which equate justice with the promotion of species-typical functioning thus institutionalize cultural expectations that people should function in standard fashion. Whoever does not do so will, at best, be subject to loss of opportunity. At worst, they will find themselves in a culture that condones excluding, experimenting on, and even eliminating them.

Privileging the Biologically Anomalous Minority
No society's population is biologically homogenous. Some people need more, and some want more, health care than others. Rather than treating everyone as if they can function alike, an alternative health care distribution policy would allocate more resources to people who cannot achieve species-typical performance levels, but only if doing so advances the general good.

Non-uniform distribution very often involves some scheme for making medical interventions in proportion to patients' needs. Need-sensitive distributive principles usually assign priority to whoever is most badly off, provided that such individuals have a reasonable probability of benefiting from special attention or resources.

This approach is the basis of the triage system of rationing health care. In principle, triage assigns priority in obtaining treatment in accordance with the direness of each patient's need, and each patient's prospect of being helped. The triage model works well enough for acute care, where the urgency of intervening is an important factor in comparing different patients' needs, and where failure to intervene means death, or otherwise avoidable disability, for the patient.

It is not as useful in allocating chronic care, where the temporal question is likely to be about the duration rather than the immediacy of care, and the harm of deferring treatment is much less clear-cut. It is not at all clear how we decide fairly which chronic patients are worst off, and which will benefit most from medical help (Silvers, forthcoming)? Is the wheelchair using individual who enjoys pain-free mobility of great range and duration, but who has no access to sites entered by stairs, better off than the individual who walks painfully? Is the individual who has learned to function with markedly reduced vision, albeit with more than species-typical effort, worse off than the individual whose vision has just begun to deteriorate?

Further, for almost any chronic dysfunction, there will be some people who flourish in spite of it, and others whose lives atrophy because of it. Are the former less deserving of care because less needy? And are those who will make the most of medical intervention, or those who will do the worst without it, most deserving?

There is yet another problem with the seemingly simple approach of assigning priority for the benefits of chronic care to whoever is deemed worst off. Because they are eligible for extraordinary benefits, they easily become, in virtue of that advantage, subject to backlashes fueled by the politics of resentment (Young, 2000). People classified as eligible for chronic care are labeled as drains on community resources and as such are excluded from some aspects of ordinary social participation, whether or not they actually use additional resources. (Silvers et al., 1998) And to maintain qualification for extraordinary allocations, the beneficiaries must focus on securing medical confirmation that they are functionally "other" than ordinary people (Silvers et. al., 1998).

Species-typicality and the Problem of "Othering"
Systems that apply the standard of species-typical functioning, whether to disadvantage or privilege individuals who fall away from it, thus seem to share a problem. Instead of ensuring health care justice, they invite "othering" people with chronic biological deficits. Such systems, meant to promote justice, tend to do just the opposite.

Both working in such a system, and depending on it, can be very troubling. This is because not sheer accident, but a system we intentionally adopt, determines who will have their health needs met most generously. As a result, rationales must be imposed to defend the system's privileging some kinds of people over others, whether it is species-typical or biologically anomalous individuals who are advantaged. Patients are impressed into the categories constructed by the system's rationales.

For instance, rehabilitation resources may not be made available to patients unless they embrace the pursuit of species-typical functioning. The individual who "settles" for life in a wheelchair may be denied further care because he has "plateaued", even if he can function more productively by adapting to difference than by approximating normality (Silvers, forthcoming).

To take a very different but analogous example, supportive or palliative interventions may be denied to individuals because they appear to have species-typical organic capacity. This is the experience reported by many people eventually diagnosed with Chronic Fatigue Syndrome (Wendell, 1996). Although patients in the latter situation are said to be too species-typical, while those in the former are insufficiently so, to receive the care they seek, they are equally "othered" by the imposition of "species-typicality" as the guiding value for distribution.

A further problem with systems based on this value is that health care professionals employed within them are made complicit with its coercive applications. It's left to them to defend their selections even if they are uncomfortable about the choices the system requires them to make.

We need to understand how medicalization has "othered" certain kinds of people, and how we can construct a medical system that does not "other" them. From the middle of the 19th century, theories about normality have been invoked to justify labeling people with embodied differences as pathological. This happened to non-European people, whose dark pigmented skin was mistakenly associated with cognitive inferiority. This happened to women, whose reproductive properties were mistakenly correlated with physical and emotional frailty. Susan Sherwin's excellent book, No Longer Patient (1992), demonstrates medicine's complicity in labeling women as a weak class.

To overcome these sad histories, recent theories of justice promote appreciating difference rather than devaluing, distancing and diminishing it. Especially over the past quarter century, democratic theory has begun to assign equal importance to the values of cultural majorities and minorities (Taylor, 1992). In this spirit, medical professionals now are educated to be sensitive to the cultural backgrounds from which their patients come.

Similar arguments can be made for like recognition of different values in regard to modes of functioning. As multiculturalism recognizes that the practices and convictions of various cultures are equally valuable, multifunctionalism similarly acknowledges the equivalent value of different modes of performing such important human functions as mobilizing, socializing, and acquiring and communicating information. Thus, for multifunctionalism, normality is no standard for the distribution of health care benefits or other social goods. Nor do patients deserve especially generous treatment either because they can be restored to species-typicality, or because they are irremediably anomalous.

From a multifunctional perspective, functioning in the most common mode has no preeminence for either collective or personal wellbeing. There are various equally effective routes to functionality. Appreciating that different modes of performing human functions may be equally viable and valuable should be a basic to allocating medical services and durable medical equipment. Further, an efficient system will address dimensions of social organization - workplace and residential design, information storage and communication mechanisms, and so on - that so favor species-typical functioning as to artificially limit atypical performance modes.

People who aren't "othered" by a system often have no interest in changing it. Allegiance to species-typical functioning may be hard to dislodge because the majority of people do not believe they will be disadvantaged in a society that privileges the most common modes and levels of performing such capabilities as communicating and retrieving information. They assume, for instance, that their sight and hearing will always fall within normal range.

However, the advent of widespread predictive genetic testing is likely to shuffle this deck. Until they are tested, individuals do not know whether the standard of normality sets a bar too high for them to meet. Once people are classified as genetically atypical on the basis of predictive testing, the question is personalized for them. For they become vulnerable to disadvantage in respect to employment, insurance protection, and even immigration, very much as people who are overtly biologically anomalous are today. Genetic discrimination is a process that will subject asymptomatic people to social exclusion now because they are likely to function anomalously at some future time.

Multiculturalism personalizes social justice by making room for diversity in the cultural practices that condition our social performances. The analogous affirmation of multifunctionalism similarly makes room for diversity in the functional practices that condition our physical and cognitive performances. Multifunctionalism personalizes health care justice by viewing patients in light of their individualized approaches to functioning. To build a system which treats patients as equals regardless of their functional prognoses, we should proscribe the dualistic presumption that categorizes functioning as either species-typical or pathological. We should, as well, proscribe appeals to either species-typicality, or its absence, as the basis of privilege in receiving health-care.

References
Buchanan, Allen & Dan Brock, Norman Daniels, & Daniel Wikler. 2000. From Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press.

Daniels, Norman. "Justice, Health, and Health Care" in Rosamond Rhodes, Margaret Battin and Anita Silvers (eds.), Medicine and Social Justice New York: Oxford University Press, forthcoming.

Patrick, Donald and Pennifer Erickson. 1993. Health Status and Health Policy. New York: Oxford University Press.

Satz, Ani & Anita Silvers. 2000. "Disability and Biotechnology" in Maxwell Mehman and Thomas Murray (eds.). The Encyclopedia of Biotechnology: Ethical, Legal, and Policy Issues. New York: John Wiley and Sons.

Sherwin, Susan. 1992. No Longer Patient: Feminist Ethics and Health Care. Philadelphia: Temple University Press.

Silvers, Anita. 1998. "A Fatal Attraction to Normalizing: Treating Disabilities as Deviations from 'Species-Typical' Functioning" in Eric Parens (ed.), Enhancing Human Capacities: Conceptual Complexities and Ethical Implications. Washington D.C.: Georgetown University Press.

Silvers, Anita. forthcoming. "Bedside Justice: Personalizing Judgment, Preserving Impartiality" in Rosamond Rhodes, Margaret Battin, and Anita Silvers, Medicine and Social Justice. New York: Oxford University.

Silvers, Anita & David Wasserman and Mary Mahowald (Afterward by Lawrence Becker). 1998. Disability, Difference, Discrimination.: Perspectives on Justice in Bioethics and Public Policy. Lanham, MD: Rowman & Littlefield.

Young, Iris Marion. 2000. Inclusion and Democracy. Oxford, Oxford University Press.

Young, T. Kue. 1988. Population Health: Concepts and Methods. New York: Oxford University Press.

Taylor, Charles & Amy Gutmann, Stephen Rockefeller, Michael Walzer, and Susan Wolf. 1992. Multiculturalism and "The Politics of Recognition". Princeton: Princeton University Press.

Wendell, Susan. 1996. The Rejected Body: Feminist Philosophical Reflections on Disability. London: Routledge.

 

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Funding for the Provincial Health Ethics Network has been provided by
Alberta Health and Wellness and the Regional Health Authorities and Boards.