| Disability, Handicap, and the Environment
(from Journal of Social Philosophy 23, 1992, pp. 105-118)
Note to the reader:
This 1992 article is dated in two ways. First, it was written during a time when the terminology in the UK and the US differed. The US (and this paper) distinguished between disability (and ostensibly objective biomedical condition) and handicap (a disadvantage produced by a disability and its social context). The UK terminology used impairment in place of the US term disability, and disability in place of the US term handicap. The UK convention has won out. The reader should therefore translate disability as impairment, and handicap to disability, in order to match the favored vocabulary as of 2006. For discussion see my web site: http://www.uhh.hawaii.edu/~ronald/HandicapDefinition.htm
Secondly, this paper endorses what is termed naturalism regarding disease and disability, following Christopher Boorse (discussed in the paper). I no longer accept that doctrine. For more on this issue see Amundson 2000, “Against normal function,” Studies in the History and Philosophy of Biological and Biomedical Sciences 31C: 33-53, available online at:
Finally, my comments in this paper regarding the contrast between disability and chronic disease, and between disability and age frailty should be compared with the strong critiques given by Susan Wendell in The Rejected Body, 1996, Routledge.
Philosophical literature on health care ethics contains remarkably little discussion of physical disability. Medicine itself, of course, is the primary topic. Mental disability receives some attention, possibly because of implications relating to patient autonomy, informed consent, and the ever-fascinating issue of mental illness. Physical disability is dealt with, if at all, as an unproblematic consequence of disease, which (like pain and death) should be avoided if possible. This paper will argue for a revised philosophical placement of disability and handicap within the spectrum of health-related concepts. A consequence of the present neglect is the failure to recognize and address certain health-related ethical problems which arise specifically from disability, and only indirectly from the more commonly discussed phenomena of disease and medical care. The environmental concept of handicap will be offered as a needed adjunct to biomedical disability. The goals of the paper will be primarily conceptual rather than ethical. It will be argued that conceptual reforms are necessary in preparation for the discussion of ethical issues related to disability which, under present conditions, have gone unnoticed by philosophers.
During the past two decades a social movement has developed which depicts disability not as a medical issue, but as a matter of civil rights. Disabled people are seen as second-class citizens, a politically oppressed minority group.1 Associated with the development of this "minority model" of disability has come a reconceptualization of the nature of disability itself. Political activism by people with disabilities and their advocates, expressed in terms of the minority model of disability, resulted in the passage of a major new piece of civil rights legislation, the Americans With Disabilities Act, on July 26, 1990. Academic philosophy has not yet taken account of the new concepts of disability or of the civil rights issues which it implicates. Purely biomedical conceptions of disability and handicap are too coarse to capture the interactions which occur between a disabled person and his or her environment. This conceptual shortcoming has ramifications in health care ethics, which is to some extent burdened with the coarse identification of disability with disease, illness, or the frailty of old age. It will be argued that a full explication of the moral importance of health care requires concepts of disability and handicap beyond what is currently available to philosophers.
The Biomedical Concept of Disease
Christopher Boorse has detailed a naturalistic account of the concept of disease and its contrast with illness.2 This account opposes the normative views of disease which assert the value-ladenness of disease assessments. Boorse presents disease as a theoretical concept of medical science, as value-free as any other scientific theoretical concept. On Norman Daniels's succinct summary "The basic idea is that health is the absence of disease, and diseases (I include deformities and disabilities that result from trauma) are deviations from the functional organization of a typical member of a species."3
In treating disease as a theoretical concept, Boorse openly abstains from a common sense analysis of the concept. His analysis is constrained by two factors: the list of "diseases" in the AMA's Standard Nomenclature of Diseases and Operations4 and the definitional principle that health is the absence of disease. The Nomenclature's list of diseases turns out to be extraordinarily long. The length results not only from technical sophistication, but also a counter-intuitive broadness of the concept of disease. The Nomenclature does recognize malaria, smallpox, cholera, tuberculosis, and cancer -- what Boorse calls the "paradigm objects of medical concern."5 But it also lists as diseases muscle paralysis, color blindness, scars, missing limbs, supernumerary digits, animal bites, stab wounds, and gunshot wounds. This inclusiveness cannot be explained by technical sophistication; lay people are quite competent to count a person's toes, or (usually) to identify a gunshot wound. Lay people simply do not describe these conditions as diseases.
The decision to use the broad Nomenclature concept of disease is partly defended by appeal to the principle that health is the absence of disease. Boorse finds the narrower and more commonsensical uses (which distinguish, e.g., among disease, disability, and injury) "important only in that under any of them, health in medicine is not the absence of disease -- since medicine regards all the conditions above as inconsistent with perfect health."6 For present purposes, the question is this: Does a distinction between disability and disease violate the principle that health is the absence of disease? In other words, is a person with a disability for that reason alone an unhealthy person, or at least a person with less than perfect health?
Disabled people, by definition I suppose, show deviations from the functional organization of a typical member of the human species. Since functionally atypical, they are "diseased" according to the biomedical concept. This implies, to Boorse, that disabilities exemplify less than perfect health. But is this correct? By what standards is it impossible for a blind person or one with muscle paralysis to be in perfect health? I do not know the conventions of the medical establishment on this issue. But if part of the reason to call blindness and muscle paralysis "diseases" is that physicians consider all blind and paraplegic people to be (to some extent) "unhealthy," then we have (I submit) a second conflict between medical and common language. We are being asked to accept a non-ordinary biomedical concept of health as well as disease. On this proposed usage, a paraplegic person who engaged in marathon wheelchair races, or a blind person with no other dysfunction than his blindness, might be called "otherwise healthy," but never just "healthy."
I submit that, in ordinary parlance, disabilities are not per se diseases (though they are abnormalities), and they do not per se detract from a person's health. This is to say that Boorse's principle that "health is the absence of disease" fails to support his nomination of disabilities as diseases unless he also provides us with evidence that physicians have a specialized use of the term "health."7
Boorse is not opposed in principle to non-technical analyses of health-related concepts. His analyses of the concept of "illness," for example, involve no appeal to technical literature. Illness was presented in 1975 as the common-sense and normatively loaded analog of the theoretical term "disease." A disease was an illness when it was judged to be (roughly) incapacitating, undesirable, and a title to special treatment.8 Illness was later de-normativized: ". . . a patient is sick or ill when pathological processes rise to a systemic level that produces global incapacitation of the whole organism."9 In neither of these cases was the Nomenclature or any other scientific source invoked in support of the definition. Rather, they came from Boorse's own (correct) philosophical intuition that "Our notion of illness belongs to the ordinary conceptual scheme of persons and their actions. . . ."10
The present work is concerned specifically with physical disabilities. It will be proposed that disability is, like illness, a category in the ordinary conceptual scheme of persons and their actions. (It is a very different category from illness, however, as shall be seen.) So there is no special reason to oppose Boorse's openly technical account of what counts as a disease to the biomedical community. As long as it is clear that "disease" is not limited in designation to the paradigmatic diseases like malaria and smallpox, there remains only verbal oddity in describing blindness or paralysis, what we might call paradigmatic disabilities, as "diseases." The unargued-for implication that disabilities are unhealthy is another matter. In ordinary speech, health contrasts with illness, not only with disease. Describing disabilities as "unhealthy" suggests that they are illnesses -- an implication which will be examined carefully below.
Boorse himself shows us a route around the semantic clash on "disease." In criticizing the introduction of the term "malady" to denote the broadest category of dysfunctional conditions, Boorse notes that "pathological" covers the same cases (diseases, disorders, injuries, lesions, defects, sicknesses, and illnesses), and that "pathology" is already in common medical parlance.11 Thus it would seem that for all practical purposes the Nomenclature-derived notion of disease is fully covered by the medical notion of pathology. This also suggests that Boorse's implicitly technical concept of health could be parsed as "non-pathological," allowing us to use the term "health" with its more ordinary connotations. I propose to do so.
It may not be obvious why I bother with terminological revisions to Boorse. If his terminology is objectionable, why not ignore it? It is because I agree with Norman Daniels that a naturalistic understanding of biomedical science, such as Boorse's, is essential to understanding the important issues in health care ethics. The concept of disability requires naturalistic underpinnings, but underpinnings of finer detail than those Boorse offers.
Etiological Sequence: Towards an analysis of disability
Boorse recognizes that it would be unwise to try to assimilate all biomedical concepts to our ordinary conceptual scheme of persons and their actions, and removes the concept of disease from that scheme. However, the fact that disabilities such as blindness and paraplegia are listed as diseases in the Nomenclature does not require us that we treat the concept of disability just as we do the concept of disease. On the contrary, I suggest that the concept of disability requires us to consider the actions (movements and perceptual acts) of a biologically normal person at the hierarchical level of the person's (whole) body. These are such actions as moving one's arms, standing, seeing and hearing things in the environment -- ordinary instances of persons and their actions. Our abilities to perform most of these actions are supported by certain grossly observable body parts -- eyes, ears, legs, and so on. When such actions are biomedically typical of the human species (perhaps relativized to age and sex), they can be said to exhibit basic personal abilities. When physiological dysfunction removes a basic personal ability, the result is a basic personal disability. It is these basic personal disabilities which, I submit, are ordinarily designated by "disability." The term "personal" here indicates that these abilities and disabilities are conceptualized at the common sense level of the (whole) person.12
Not all basic personal abilities have such obvious functional supports as seeing with one's eyes or walking with one's legs. The abilities to remain awake and alert for several hours a day and to remain active without unreasonable fatigue are basic, though they are not supported by normally observable body parts. But basic personal abilities are not the same as non-pathological conditions (or "healthy" conditions, in Boorse's sense). This is because physiologically deep "abilities," such as the ability to metabolize sugar or to transmit neural impulses along certain pathways, are not personal and basic in the required sense even though they are biomedically normal. It is not John, but John's optic nerves, which transmit neural impulses from his retina to his brain. Because John's optic nerves (together with other body parts) function properly, John has the ability to see. Similarly it is not Jane, but her optic nerves, which fail to transmit impulses. As a result, Jane has a basic personal disability; she cannot see. On this conception, John may be "unable to eat certain foods (without illness)" but he cannot be "unable to metabolize sugar."
At issue here is not the nature of function. I have no quarrel with physicians who may choose to describe their patients as "unable to metabolize sugar."13 The point is that metabolizing sugar is not one of the basic abilities by which we (non-physicians) assess a person's interactions with his or her environment. A person who cannot walk is disabled, even if that person has access to other means of locomotion. On the other hand, a person unable to metabolize sugar but able to maintain normal interactions with her environment (through medical support perhaps) is not thereby disabled. The ordinary conceptual scheme of persons and their actions cares not a whit for neural transmission nor sugar metabolisis. From the biomedical point of view, the function-serving relation between legs and walking is the same as that between neurotransmitter molecules and the transmission of neural signals. This justifies the biomedical practice, recognized by Boorse, of grouping neural transmitter disorders together with leg muscle paralysis as "pathological." Both are deviations from the functional organization of a typical member of the species. But a whole-person conceptual scheme need not respect this biomedical convention.
Disability is to be seen as a functional failure specific to the level of basic personal abilities, but non-specific as to its underlying causes. Disabilities qua disabilities are classified not by their causes, but by the basic personal abilities which are absent. The absence presumably has some cause, since (by definition) the normal biological condition includes their presence. But blindness is blindness, and muscle paralysis muscle paralysis, whatever their causes.
This explains why the Nomenclature designations sound so odd to the lay reader. It is not just that commonsense diseases like malaria are grouped together with injuries like gunshot wounds. It is that etiological consequences are collapsed with their causes. Paraplegia (muscle paralysis of both legs) can be the result of a gunshot wound, a stab wound, poliomyelitis, muscular dystrophy, or many other injuries or diseases (using the vernacular senses in which "disease" and "injury" contrast), or of genetic disorder. The same is true of blindness and any other disability. Classifying disabilities at the same level with their causes creates a peculiarly one-dimensional taxonomy, with all taxa at the same rank. It is as if automobile mechanics were to create a set of diagnostic categories which included "car won't start," "battery dead," and "short circuit through the gasket on the left headlight assembly." To be sure, these are all automotive "pathologies." But each is etiologically traceable to the next. Why consider them species of the same genus?
Disabilities are the absences of basic personal abilities. Biomedical sciences study, among other things, the various causes and remedies of disabilities. Disabilities, in common with the biological conditions which create them, are pathological. But disabilities play a special and unrecognized role in the ethics of health care, and (it will be argued) in other social policy as well.
Disability and the Moral Importance of Health Care
Consider why access to health care has moral importance. Two of the consequences of poor health are apparent: pain and death. Diseases and other pathological conditions can make life extremely unpleasant, and even threaten its existence. No explanation is needed of why we value freedom from pain and sustenance of life. But health care is not limited to pain killing and life saving. A person who is guaranteed a long life free of pain ought not to relinquish health care. Health is a prerequisite to other things in life which are independently valued. Access to life's pleasures can be limited by the effects of poor health. Equally importantly, health is a prerequisite to achievement. In other words, poor health isolates individuals from benefits of society which are open to those whose health is uncompromised.
This opportunity-maintenance feature of health leads some to assign health care a special moral importance. Many believe that health care should be taken out of the market place, and not bought and sold as a commodity. Even free market advocates would agree that prudent people would take special care to assure their own access to health care. Norman Daniels addresses the question of why needs created by the loss of species typical functioning ("disease" in Boorse's sense) are morally special. His answer is not that impaired health automatically takes away access to valued goals, since we can often adjust our goals to fit our limitations. Rather, functional impairment can "reduce the range of opportunity we have within which to construct `plans of life' or `conceptions of the good'. . . . as when, say, a ballerina is paralyzed or a mechanic loses a hand. . . . So the kinds of needs picked out by reference to normal species functioning are objectively important because they meet this high-order interest persons have in maintaining a normal range of opportunities."14 The loss of normal species functioning is not here presented as morally important (merely) because of the pain or death which may ensue. Rather, functional loss is seen to entail opportunity loss. This kind of explanation of the moral importance of health care is widely accepted.15
Let us pursue this line of thought one step further. Why are disease and poor health a threat to one's access to other goods? The most direct answer is that disease and poor health can cause the loss of basic personal abilities. In other words, diseases cause disabilities. The loss of species typical abilities can be presumed to reduce an organism's access to the goods afforded by that organism's typical environment, whether a short term weakness caused by a temporary fever or a life long disability. This is not to deny the independent importance of pain- and death-avoidance. Disease or poor health are morally special because 1) they threaten life, 2) they threaten comfort, and 3) they threaten a person's opportunity to pursue other pleasures and achievements. This last threat is the threat of disability. To the extent that the third threat makes health care morally important, the avoidance of disability per se is at the moral core of health care. This is implicitly acknowledged in current discussions of health care ethics.
It was urged above that disabilities are not in themselves detriments to health. A disabled person may be in perfect health; he or she is not condemned to merely "otherwise-perfect" health. Does that assertion conflict with the claim that the avoidance of disability is one of the grounds for the special moral nature of health care? No. Unhealthy conditions (e.g. diseases and injuries) threaten to create disabilities. It does not follow that disabilities are themselves unhealthy conditions.16
The Environmental Concept of Handicap
To review our points so far, we have distinguished disability from disease (commonly so-called) as one distinguishes an effect from one of its causes. We accepted Boorse's naturalistic account of species typical functioning as a basic biomedical category, though we refer to the lack of such functioning as a pathological rather than a diseased condition. We also rejected the identification of pathological with unhealthy conditions. It was noted that health care has moral importance in large part because health is a prerequisite to the opportunity to pursue other goods. Disability was defined in a Boorsian spirit as a lack of species typical functioning at the basic personal level. This strongly suggests that disability is the typical proximate biomedical cause of the loss of opportunity, which, in turn, is at the core of health care ethics.
Disability restricts opportunity. How? The restriction seems to follow simply from the fact that disabilities involve species-atypical function together with the fact that species-typical function is an especially efficient means of procuring the goods available in the environment in which an individual of a particular species finds itself. This answer seems obvious enough in view of the biological (or evolutionary) principle that members of species fit well into their environments. Functionally atypical species members simply won't fit as well as typical members into the species's typical environment. But, as always in biology, things are not this simple. Complications arise from the fact that the environment in which members of the human species pursue their goals is largely constructed by human beings themselves. Nothing subtle or metaphysical is intended here. The point is not that humans "construct conceptual worlds," but that humans construct buildings. The opportunities which are lost to a disabled person are to be attributed not only to the species-atypicallity of the person's biology, but also to the architectural design of the buildings in which some of those opportunities reside.
A distinction is needed here between the biomedical concept of disability and the loss of opportunity to which disability so frequently gives rise. The necessary distinction has been labelled in various ways. One convention distinguishes disabilities from handicaps. Beatrice Wright expresses it this way: "One concept refers to limitation of function that results directly from an impairment at the level of a specific organ or body system. For this, we shall use the term disability. A word is also needed for the actual obstacles the person encounters in the pursuit of goals in real life, no matter what their source. For these we shall use the term handicap. . . . A fundamental point is that the source of obstacles and difficulties, that is, what actually handicaps a person, cannot be determined by describing the disability alone."17 Nothing hangs on the specific terminology here. Authors differ in usage, but recognition of the distinction has become common. The important point is that a disability such as paraplegia becomes a handicap only to the extent that the paraplegic person's environment isolates him from some need or goal. A wheelchair user has virtually no mobility handicap in a building with accessible doorways, elevators, and work areas. But he is greatly handicapped when his goals are located up or down a flight of stairs. This is the environmental concept of handicap.18