The Stigma of Illness - Marginalisation through illness in deh Cancer Jounals by Audre Lorde

TABLE OF CONTENTS

1 INTRODUCTION

II THEORETICAL PART
II.1 THEORETICAL CONCEPTS OF SOCIAL STATUS AND ILLNESS ROLES
II.1.1. BRANT WENEGRAT’S CONCEPT OF SOCIAL (ILLNESS) ROLES
II.1.2. BODILY FORM AS A SOCIAL ROLE
II.2 THE STIGMA OF ILLNESS - MARGINALISATION THROUGH ILLNESS
II.2.1. THE STIGMA AND SHAME OF ILLNESS

III ANALYSIS OT THE CANCER JOURNALS BY AUDRE LORDE
III.1. WHO IS AUDRE LORDE? – A SHORT BIOGRAPHY
III.2. ANALYSIS OF AUDRE LORDE’S ILLNESS ROLE IN THE
CANCER JOURNALS – MOMENTS OF MARGINALISATION
III.2.1. DIFFERENCE VS. CONFORMITY
III.2.2. SILENCE AND INVISIBILITY
III.2.3. ISOLATION AND SEPARATION
III.2.4. FEMININITY AND SEXUALITY
III.2.5. MORTALITY

4 CONCLUSION

5 BIBLIOGRAPHY

1 INTRODUCTION

As I began to plan this seminar paper, I knew that I wanted to write about the negative effects of illness upon a person’s life, since I always sympathise with affected people and question the social mechanisms of marginalisation. The questions I often ask myself are the following ones: Are there no other behavioural patterns towards sick people in our society possible? And why can the stigma of a special disease be so powerful in automatically isolating an affected person? I knew from the very beginning that this paper would only touch upon some questions and that it would be impossible to investigate the whole field of marginalisation. But to deal with the topic of marginalisation would help me to answer some questions and - what I consider more important - to make me aware of social behavioural structures and attitudes towards illness. Because it is society that determines our perception towards illness and finally creates strong prejudices about some diseases. And in my opinion, this awareness of society’s power and influence is worth more than any all-including answer to questions concerning illness and stigma.

Furthermore, the topic of stigma and marginalisation allowed me to cover several disciplines, for example the disciplines of sociology, (social) psychology, medicine and anthropology. Thus, I had an insight into different areas and read books of diverse disciplines, not only of medicine.

To decide about the book which I was going to analyse was not so simple at the beginning. Nevertheless, with the help of Dr. Franziska Gygax I finally decided to examine Audre Lorde’s book The Cancer Journals, since Audre Lorde was marginalised not only because of her breast cancer, but also because of her race and homosexual love. I considered this “double marginalisation” as an interesting starting point.

My paper is structured into two main parts: The first main part is about theoretical concepts to introduce the theory of social roles and illness roles and the concept of bodily form as a social role as well. After that I examined the meaning of stigma and shame of illness and also referred to an example of a stigmatized woman in South India. In the second main part of the paper I analysed important situations of marginalisation in The Cancer Journals by Audre Lorde. Audre Lorde, who tried to work up her experience of having breast cancer and to encourage women with breast cancer as well, is presented in a short biography, since some biographical background of her might be helpful for the analysis. This biography is followed by the book analysis, which is structured by some keywords which exemplify moments of marginalisation in Audre Lorde’s life.

I would like to finish this introduction with two definitions: The definitions of two important terms which are my guidelines throughout the whole paper and are mentioned in the title as well. I define them with the help of some quotations, but also how I do understand them.

First, the term ‘stigma’ has to be defined:

Stigma (lat.), “Brand-, Schandmal“, phys., psych. oder soziales Merkmal, durch das eine Person sich von allen übrigen Mitgliedern einer Gruppe (oder der Ges.) negativ unterscheidet u. aufgrund dessen ihr soziale Deklassierung, Isolation oder sogar allg. Verachtung droht (Stigmatisierung) (Hillman, 1994: 843).

(The meaning of stigma is explained in more details in the chapter “The Stigma and Shame of Illness”.)

Second, the term ‘marginalisation’ can be defined as a state or condition of a person who does no longer completely belong to a group or is totally excluded from the group which originally was his/her social environment. This person might be called a marginal man or an outsider who stands between different cultures, groups and organisations. Such a social position often causes problems in adopting a given social role and in fulfilling expectations as well as psychic conflicts (see: Hillman, 1994: 569, 711).

Of course, the meaning of ‘marginalisation’ can also be derived from the verb „to marginalise“, which means to push, to edge out somebody who does not conform to certain socially given standards to the margin, in an outside area or into a specific social group.

II THEORETICAL PART

II.1 THEORETICAL CONCEPTS OF SOCIAL STATUS AND ILLNESS ROLES

To begin the first main part of this paper, I have a closer look at two theoretical concepts: Brant Wenegrat’s concept of social roles and illness roles and the concept of bodily form as a social role. To understand the situations of marginalisation in Audre Lorde’s book The Cancer Journals, these concepts provide a good help, since marginalisation is always based on new and rather unusual roles people are “forced” to adopt, when affected by a stigmatised illness. Therefore, illness roles are the basis for marginalisation.

II.1.1. BRANT WENEGRAT’S CONCEPT OF SOCIAL (ILLNESS) ROLES

Since the meaning of roles and illness roles is analysed in the following part, the term ‘roles’ needs to be defined at first:

Roles are behavioral patterns dictated by social settings, while schemata are the internalized conceptions, including beliefs and emotional valuations, that underlie these roles (Wenegrat, 1995: 49).

In social settings individuals learn to take on a rewarded or several rewarded social roles. For an adult, such a rewarded role could be the role of the mother or the father, since these two types of roles are generally accepted as good and honourable. Some times after adopting a role, the role is no longer perceived as a role; rather it has become real for the individual who does no longer discern that s/he is constantly performing a given social position and role.

In general, people try to take on advantageous roles and aspire to remain for as long as possible in a positive social setting. But if an individual is forced to change his role and to adopt a new one, s/he is able to adopt a new role rapidly in the case of a positive role. If a negative and stigmatised role has to be adopted, people generally have some difficulties and fears. For example, an individual is forced to adopt a new role when s/he is exposed to a radically new social setting, as a consequence of being ill or having a life-threatening disease like cancer. In the book Illness and Power by Brant Wenegrat a good example concerning rapid role adoption of cult members is described:

Seeking acceptance, recruits to religious cults quickly learn the role, and adopt the corresponding schemata, appropriate to cult members (Wenegrat, 1995: 52).

After a new social role has been taken over (no matter whether deliberately or not), a person’s values and identity are changing, since the individual completely absorbs the role which s/he is playing.

However, a sense of belonging as well as a feeling of alienation might occur during the process of role adoption. On the one hand, a sense of belonging is felt concerning the new group with which one shares the same values; on the other hand, social alienation is felt, when looking back to the given up role or when the individual has to adopt a negative and stigmatised role, as for example an illness role.

Now, the meaning of illness roles has to be analysed more closely. Since

[t]he sociologists Henry Sigerist and Talcott Parsons were the first to observe the social-role aspect of bodily illness (Wenegrat, 1995: 53)

and Parsons’ concept of illness roles completes Wenegrat’s view perfectly, a quotation of Parsons about roles and illness roles can be used for a first understanding of illness roles. Parsons concludes that

being sick is a social role and not primarily a biological or physiological condition. Thus, illness can be understood as a social and not a biochemical condition. Additionally, […] it is the doctor or the medical institution in general that might sanction entry into this illness role. Therefore, doctors are considered to be quite powerful (White, 1991: 13).

The status of being ill, thus, must be accepted and acknowledged by society in order to allow a person to perform the new role of being sick. Consequently, if a person is socially accepted as “real” sick, the illness role allows him/her to be released from several social obligations, which is not always positive, since this new social status, the illness itself and the illness role often change a person’s life and social relationships in a negative sense.

The current debate about the role of medical institutions in the whole process of illness role adoption is important for a contemporary view of illness roles. Since medical institutions might teach false illness roles, doctors and patients who wilfully accept these roles create false illness roles together. False illness roles are often roles that are either stigmatised or exalted and correspond to a predefined view of illness.

Patients’ willingness to take on unpleasant and difficult roles reflects the social forces to which they have been subjected, as well as more personal factors peculiar to each patient (Wenegrat, 1995: 54).

Therefore, sick people and patients try to adopt stereotypical, traditional, culturally and socially accepted illness role, since they are imposed by social and medical institutions. Even though sick people tend to take on positive and not stigmatised illness roles, they can not choose between a positive and negative illness role, when they are suddenly affected by a stigmatised illness. Thus, they are given their illness role and status in society by fate.

II.1.2. BODILY FORM AS A SOCIAL ROLE

A specific social role is looked at in the following chapter, namely the bodily form of women. By having a slim shape and perfect appearance, women generally adopt and accept the traditional role of women to look good. After the adoption of this social role, they hope to appear more feminine and attractive, since they correspond to the female stereotype given by society.

Consequently, „women suffer the cultural overidentification with their bodies“(Eisenstein, 2001: 135) and are obsessed with the idea to have a perfect body and appearance. Thus, their identity and self-esteem are often based on their exterior and their body. However, this social role of perfect female appearance is reprehensible, since it includes given bodily standards and social norms to which women have to submit. Therefore, woman do not construct their identities on a self-created image of femininity and appearance, because they are rarely so self-confident to rely on their own idea of beauty and to feel good-looking, even when not corresponding to these given bodily standards. Many women are no longer capable to question female stereotypes which are mainly constructions of mass media, fashion industry and the other sex.

The main problem concerning these female bodily standards is that there is an equation of femininity with our bodies. Women that do not correspond to the beauty ideal are considered not to be female enough. As a consequence, to lack of femaleness means to lack of attractiveness and male admiration as well. In order to avoid such a lack, women constantly feel under pressure to adapt to the socially given beauty ideals. Since today only slim women are considered to be attractive, many women diet, which leads to self-starvation^[1] and anorexia. Anorexia is a contemporary disease in the industrialized countries and is an illness role which mostly women tend to adopt for several purposes. For example, it might serve to control social environment or to attain the socially given bodily norms. Therefore, the expectations of society regarding female bodily form might initiate anorexia and the pure obsession with the body itself.

In general, women in our society are expected to show their worth as much through their bodily form as with diction and language, jewelry, clothing, and other goods [...]. Their tastes in bodily form, as much as their tastes in jewelry and clothes, are determined by social norms and tend toward idealization of excessive thinness (Wenegrat, 1995: 106).

Certainly, societal expectations that lead women to starve themselves are in some sense invidious to women and hence reflective of women’s lack of social power (Wenegrat 19: 107).

Women especially suffer from the fanatic obsession with their body because of one body part: Their breasts. On the one hand, they are supposed to be thin; on the other hand, they should be large-breasted in order to appear feminine, since in western societies femaleness is equated with two well-shaped breasts^[2]. Furthermore, female nurturance, sexuality, reproductive capacity and bodily health are associated with breasts. Even though men are often said to be responsible for women’s submission to the bodily ideal of large breasts, both men and women associate positive features of femininity with a perfect body including large breasts.

The breast, whether visible or not, is fetishized by men and women, even though this desire takes different form (Eisenstein, 2001: 149, emphasis added).

Consequently, women define their identity not only by their weight and bodily form, but also by the size and shape of their breasts. Finally,

[...] the white body becomes a universalized abstraction: thin, large breasted, small waisted, with blond hair. (Eisenstein, 2001: 141).

Debates about breast cancer and marginalisation as a consequence of having only one breast and no longer corresponding to the given bodily ideal may help us to become aware of the social role of bodily form, thus, to impeach such beauty ideals and to deny the importance of appearance in favour to health.

II.2 THE STIGMA OF ILLNESS – MARGINALISATION THROUGH ILLNESS

The following chapter is a brief explanation, why certain illnesses and illness roles result in marginalisation and why others do not marginalise at all^[3]. Furthermore, it partly clarifies the meaning of shame and stigma, since both might be initiated through marginalising illnesses, and includes an example which shows that the stigma of illnesses is socially established, justified and varies in different cultural and historical backgrounds.

II.2.1. THE STIGMA AND SHAME OF ILLNESS

In general, shame and stigma are two socially determined feelings and perceptions and thus, often result in social marginalisation. Firstly, shame is established by somebody’s own feelings, thus, not directly (but indirectly) guided by the social environment, whereas stigma is clearly something that is the result of societal norms, values and thus of a person’s social environment. Therefore, it is society which projects stigma and so-called negative attributes (attributes that are considered to break social conventions) on marginalised people. These stigmatised people are the carriers of all the negative and evil attributes - in the eyes of the intact, valuable and healthy society – and do not belong to ‘normal’ social groups, instead they only fit in a group of outsiders. „In this sense, stigma helps to define the social identity of the group“(Kleinman, 1988: 159).

The nature of stigma has changed during all the centuries: Long ago, „[f]rom the Greek, ‘to mark or brand’, stigma referred to marks that publicly disgraced the person“(Kleinman, 1988: 158). Step by step, the meaning of stigma shifted towards a more religious definition of stigma (for example, somebody’s body was marked by God’s grace), and after that toward the medical definition of stigma. As an example of this medical definition, bodily marks were visible stigmata for a serious, hidden illness. Thus, these visible stigmata functioned as exterior warning signs. Finally, stigma was attached to people who were marked and marginalised through ugliness, deformity or blemish. For example, in former times, the lepers were strongly stigmatized because of their deformity and because their body did no longer correspond to the socially given concept of a healthy human being. Recently, „ stigma has come to refer more to the disgrace than to the actual bodily mark“(Kleinman, 1988: 159). Thus, the meaning of stigma shifted from physical, exterior symptoms to socially arranged mental rejections of people who do not fit into the structure of today’s societies. A good example for this recent meaning of stigma is the disgrace which a HIV positive person has to endure, even though in the beginning this person is not visible marked by the virus. S/he is socially marginalised after becoming public that s/he is suffering from the HIV virus, since only the name and the knowledge about this disease carry stigma. Today, it does not matter whether an illness is visible or not in order to marginalise an affected person, it is only the negative association which is linked to a certain illness and finally stigmatise a sick person. However, there still exist many illnesses that strongly marginalise because of the exterior signs, marks of the disease. For example, a person who suffers from disfiguring and crippling afflictions does not only suffer from social marginalisation, but also from her/his new presentation of self.

[...]

^[1] In the 19th century the meaning of self-starvation differed from the meaning it has today. Self-starvation had a spiritual and religious meaning and was not (or just a little) part of an illness role.

^[2] Thus, the female body is becoming more and more a fantasized icon, having a very slim shape, but large breasts as well. In fact, nature did not create women to have both - either a woman has large breasts or she is very slim, but not large-breasted. To have both is not natural and can only be achieved with the help of plastic surgery. Thus, pretence slowly becomes naturalized.

^[3] To describe all the different types and situations of marginalisation would go beyond the scope of this paper, but in my analysis of Audre Lorde’s book, some moments of marginalisation are examined.