Women and the illness role: rethinking feminist theory

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<ul><li><p>Women and the illness role: rethinking feminist theory </p><p>MARlON PIRIE York university* </p><p>Une femme adopte le r6le de malade. Comment analyser ce phenomhne? Je propose dans les pages qui suivent une thbrie fbministe de ladoption du r61e de malade qui met laccent sur des formes culturelles et phenomenologiques dinvestigation. Diverses auteures feministes ont rkemment trait4 ce probleme en soulignant comment le contr6le social patriarcal sur les femmes peut sexercer par la definition mgme des maladies. Mais les etudes produites dans ce cadre ont tendance A negliger la fapn dont les femmes vivent les maladies ainsi d6finies. Ces etudes sont alors incapables de comprendre pourquoi certains types de maladies - le syndrome pr6-menstruel, par exemple - acqui&amp;rent une credibilite certaine, alors que dautres dont letiologie et la symptomatologie sont similaires demeurent dam lombre. Un paradigme plus etoffc? du comportement de malade, comme celui propod ici, examinerait de plus prhs la relation entre structure sociale et exp6rience sociale de la maladie, ainsi quentre idblogie et biographie. En derniere analyse, je propose un paradigme qui explore la designation des maladies a trois niveaux danalyse: U les activies productrices des groupes dominants qui ont un inter&amp; politique ou commercial dans la d6signation medicale; 2/ les activit4s produdrices de celles et ceux qui adoptent la dbsignation; et 3/ les trajets ou dbterminants culturels qui predisposent ladoption collective de certains types de maladies A lexclusion de certaines autres. </p><p>This paper advances a feminist theory of women and illness behaviour which places a stronger emphasis on cultural and phenomenological forms of investigation. Current theoretical treatments of this topic by feminist scholars focus on how definitions of illness may be viewed as patriarchal forms of social control of women. Rarely do such studies investigate the personal experience of </p><p>* I wish to thank Professor Tom Wilson for his continuing support of my work, Professor Thelma McCormack for her critical comments on an earlier version of this paper delivered at the Learned Societies Conference, June, 1987, and Professor Norman Bell for his col- laboration on the empirical project out of which the ideas for this paper developed. The author is, of course, solely responsible for the ideas presented here. This manuscript was received in May, 1987 and accepted in February. 1988. </p><p>Rev. canad. Soc. &amp; Anth./Canad. Rev. Soc. 8c Anth. 25(4) 1988 </p></li><li><p>629 WOMEN AND THE ILLNESS ROLE </p><p>women adopting the illness role. As a result, such approaches fail to articulate how it is that some categories of illness, such as the premenstrual syndrome, come to be credited with plausibility, while others similar in aetiology and symptomatology, are ignored. A more comprehensive paradigm of illness behaviour as suggested by this paper would explore, more fully, the relationship between social structure and the social experience of illness; between ideology and personal biography. Ultimately, the paradigm suggested here explores illness labelling at three levels of investigation: l/ the productional activities of dominant groups with commercial and/or political self-interests in medical labelling; 2/ the productional activities of those adopting the label; and 31 the cultural pathways or determinants which predispose the collective adoption of some illness categories, and not others. </p><p>In discussing the relevance of feminist theory to the sociological study of women and health, it is instructive to recall something of the aims, content, and spirit of discovery involved in the feminist research enterprise. In the social sciences, feminist research incorporates two distinct but complemen- tary goals. The first is a humanistic, value oriented one, where political change and a commitment to social justice are primary (McCormack, 1981b: 2). As Margrit Eichler in a recent review of the topic asserts: At the most fundamental level, feminist scholarship is committed to understanding and improving the situation of women (Eichler, 1985: 624). At the same time, feminist research has increasingly embraced what are often called the soft paradigms; models which emphasize reflexivity (of both the researcher and her subjects), subjective experience, cognitive structures, intuition, personal biographies, and perhaps most controversially for the social sciences, feel- ings. Feminist theory has long rejected the value of processing lifeless vari- ables in favour of attempting to understand the subjective experience of human beings. The preferred epistemology among feminist scholars is and has long been characteristically phenomenological (McCormack, 1987: 2) and its preferred modes of investigation have remained characteristically qualitative. (See Baumrind, 1980; Oakley, 1981; Stanley and Wise, 1985; Eichler, 1985; McCormack, 1987; for a discussion of feminist applications of qualitative research). </p><p>The complementarity of these aims is suggested by the argument that it is not largely, but only through the phenomenological investigation of womens subjective experience that 1/ identity and credibility will be res- tored (McCormack: 1987) and that 21 womens understanding of their own political efficacy in an oppressive society would be revealed (often via the research enterprise itself). Incorporating these aims, then, the spirit of feminist research involves not only a consciousness-seeking, but a con- sciousness-rais ing process, as well. Lillian Rubins combined phenomenological humanistic approach (1976; 1979; 1981) stands out as an exemplary model of the feminist research enterprise. </p><p>The phenomenological orientation of feminist research in the area of women and illness behaviour, however, has not been as fully utilized as it </p></li><li><p>630 MARION PIRIE </p><p>might be. In terms of empirical research, quantitative studies far outweigh qualitative studies; structural variables are preferred over process variables as modes of measurement. Indeed almost no studies on gender and health exist which address the way in which symptoms are labelled and the severity of illnesses assessed by individuals (Verbrugge, 1985: 156). </p><p>Similarly, theoretical discussions tend to reject phenomenological ap- proaches to the study of women and illness behaviour. The preferred orien- tation here is to develop macro analyses which are largely directed towards identifjling agents of social control and the strategies of medical labelling in which they engage. While such discussions are useful in their ability to iden- tify the non-medical motives influencing the medical labelling process, there is no attempt to explain how medical labels themselves become internalized by the subjects involved. </p><p>Most such analTses tend to focus on the particular problems of the female reproductive role, an aspect of womens experience which would seem to lend itself most fruitfully to phenomenological investigations. These argu- ments generally comment on how patriarchal discourses of illness foster negative labels of menstruation, menopause, and childbirth, as ways of restricting womens participation in society. The tone such discussions often take is exemplified in the following passage by Paula Weideger in her wide- ly cited book Female Cycles (1982). As explanation for the relationship be- tween cultural views of menstruation and the position of women in society, Weideger argues that </p><p>A committed misogynist will use any example of womens weakness to bolster his prejudice. He already uses the very existence of menstruation and menopause to prove that woman is unpredictable and unfit for positions of trust and respon- sibility. (Weideger, 1982: 13) </p><p>She then goes on to explain that it is through these patriarchally fostered cultural views that women so readily embrace natural events such as menstruation and menopause as illness constructs. </p><p>What is problematic about the typical feminist analyses of women and ill- ness behaviour is that the relationship between the construction of illness labels and their subsequent adoption as illness role behaviour is assumed but never explained. There is no exploration of how women themselves in- terpret bodily events associated with the reproductive function. There is no exploration of the generative properties of the social interaction within which illness labels are adopted by individuals. There is no exploration of the social and cultural context within which certain illness labels, such as the premenstrual syndrome are credited with plausibility by large numbers of people, while others, such as the Epstein Barr Virus Syndrome; receive comparatively less notoriety. Ultimately,there is no attempt in analyses such as Weidegers to explain the relationship between abstract categories of knowledge and their internalization as part of ones personal biography. </p></li><li><p>631 WOMEN AND THE ILLNESS ROLE </p><p>What may be said of such studies as Weidegers, then, is that however humanistically oriented, the rhetoric of feminism is continually cited, but the voice of women seldom heard. The result is a somewhat simplistic causal model which argues that ideological forms of knowledge flow in a more or less undiluted form from patriarchal structures of control and deposit them- selves unproblematically on unwitting, passive subjects. Such models are appealing in their ability to identify the politics of medical labelling, but in assuming that the construction of a label ensures its collective adoption, these analyses ignore the central fact that illness is a world made meaning- ful only through culturally situated social interaction. In point of fact, if the essence of feminist research is its insistence on beginning from the point of view of womens reality; its insistence on asserting the validity of womens experience (often ouer the validity of theory); its insistence on exploring the contradictions between womens involvement in everyday experience and the language of theory, (Stanley and Wise, 1985: 135,163) then feminist analyses of women and the illness role fall far short of the stated goals of the feminist research enterprise. </p><p>It is in the context of such questions and issues that the present discus- sion is formulated. It is the purpose of this paper to suggest a preliminary conceptual schema of illness behaviour which reaffirms the commitment to exploring the subjective experience of the actor as she attempts to make sense of a culture-bound world of illness. Both the emphasis on subjective experience and the emphasis on illness as a culture-bound category of knowledge are essential to a research enterprise committed to exploring the way in which women make sense of a world largely designed by and for men. </p><p>Agreeing with the position that illness labelling can constitute an ideo- logical form of social control, the rationale for incorporating a phenomeno- logical orientation is based on the premises that V there exists a determinate relationship between ideology and individual experience; and 2/ this relationship is discoverable ultimately through phenomenological forms of investigation (Wuthnow, 1985). The rationale for emphasizing the impor- tance of regarding illness as a culture bound syndrome is based on the premise that the meaning illness holds for any individual is grounded in, though not reducible to, the network of meanings any illness has in a par- ticular culture; the metaphors associated with disease; the basic values, practices, and cultural preoccupations which determine how some bodily states and events and not others become coded and subsequently adopted as illness states (Good and Good, 1980: 176). </p><p>The central position of this paper, then, is that a full exploration of the illness labelling process involves examining three (but by no means sequen- tial) phases of reality construction processes. First of all, the social construc- tion of medical knowledge must be traced to the productional activities of dominant groups with commercial and/or political self-interests. This is es- sentially the mode of analysis adopted by the current feminist models. Secondly, the social construction of medical knowledge needs to be inves- tigated at the level of the productional activities of the subjects themselves; the face-to-face encounters where the world of illness is made meaningful </p></li><li><p>632 MARION PIRIE </p><p>to the actor. And thirdly, this reality construction process needs to be inves- tigated in terms of the cultural determinants which predispose the collec- tive adoption of some illness categories, and not others. </p><p>This paper will begin by reviewing the labelling theory and social control literature out of which the more recent feminist critiques of women and ill- ness behaviour have emerged. From there, a new conceptual framework in- corporating a phenomenological and cultural orientation will be presented. The paper will conclude with a discussion of how such a framework may be applied to the study of women and illness behaviour by referring to the authors own research on the premenstrual syndrome. </p><p>THE SICK ROLE: FROM FUNCTIONALISM TO LABELLING THEORY </p><p>The labellingbocial control models of illness behaviour emerged in response to the essentially conservative position at least implied in the original Par- sonian conceptualization of the sick role. While Parsons model of the sick role is well-known to most sociologists, it is worthwhile to review certain of those premises contained in his theory, since that model provided the major impetus for exploring the question of social control and illness labelling strategies as political processes. </p><p>Essentially, Parsons argued that while malingering was to be considered deviant, the illness role in general should be regarded as a predictable, in- deed adaptive response to social life. Illness allows the individual temporary but legitimate exemption from normal obligations and duties, or, as the fol- lowing citation illustrates, legitimate, non-disruptive (albeit displaced) ex- pressions of social discontent. </p><p>Parsons, for example, once claimed that women often seize upon illness as a compulsively feministic way of reacting to (their) exclusion from the life open to a man, or as an institutionalized way out of the burdens of her heavy human relations management (Parsons and Fox, 1968: 380-1). And while Parsons in no way endorsed illness as an adaptive response to the bur- dens of responsibility, he did ultimately view the sick role as both a predict- able, but at the same time potentially abusive strategy of coping with the pressures of social life. In order to counteract the potential disruptions malingering might engender, Parsons recommended that all sick in- dividuals should attempt to regulate the illness role by seeking out com- petent and objective, (i.e., professional-medical) help. The illness role, then, was seen by Parsons as a socially predictable but potentially deviant form of institutionalized interaction, the func...</p></li></ul>

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