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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.
Contents
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