Issues of the Stigma of Cancer

As we are aware, humans are gregarious beings, actively shaping the evolvement of the social and physical environment, mapping out behaviors observed, making varying interpretations of their lives and communicating these ideas through communities. All this encompasses a society’s culture (Swain et al., 1993). Any deviation from the norm is a sign of potential marginalization from mainstream society. Cancer poses a threat to social inclusion, thereby creating a stigma and leading to stereotyping.

As Hunt (1998) states: An impaired or deformed body is a difference that hits everyone hard at first. Inevitably it produces an instinctive revulsion, has a disturbing effect. Our own first reaction to this is to want to hide ourselves, to attempt to buy acceptance on any terms, to agree uncritically with whatever is the done thing.

Cancer is considered a personal tragedy. Especially so in breast cancer where (according to Hahn, 1986): ...widespread aversion towards women with breast cancer may be the product of both aesthetic anxiety, which rejects marked deviations from “normal” physical appearances, and of an “existential” anxiety which may find a projected risk of rejection (Hahn, 1986, p. 125). Is this inclusion or exclusion?

Stigma Theory by Goffman

According to Watson (2003), impaired people are marginalized by virtue of their impaired body. Social interaction is a combination of environmental behavior, people-to-people encounters, the media and one’s own thoughts. A person’s physical appearance allows society to categorize him or her. Goffman (1968) terms this a social identity. “Normality” is an assumption conceptualized by society. People with a physical impairment are considered to be unable to achieve full humanness. By definition, stigma dehumanizes the person, therefore creating discrimination and hence reducing their opportunities in life.

The person living with cancer has to make extra effort to justify her status as an ordinary, human and worthy individual, but the reaction of society may dispute this struggle through an unconscious act of exclusion.

Mystifying Cancer

For many with cancer, marginalization or rejection is disastrous. It causes despair and seclusion, which in turn widen the gap and produce further rejection and stereotyping. One becomes literally alienated by the social attitudes encountered daily. Such prejudice and discrimination can be initiated by cancer survivors themselves. Demystification of the concept of being victims in the eyes of society can help to show that cancer is just another disease, and that one can bounce back to living again after treatment is completed. It can be difficult to form a constructive relationship if cancer survivors are bitter and hostile to the surrounding community. If the social environment is oppressive and characterizes patients with cancer as victims, then inevitably that is the way cancer survivors see themselves. If the answer lies in the survivor changing his or her own mindset, then they must discover the mechanisms by which an inner source of strength and support from peers and loved ones can be rediscovered. Rebuilding self-esteem in an environment that continues to be prejudiced can be a challenging task. It is essential to undergo transformation from victim to survivor.

The Chinese Culture And Cancer

The Chinese largely view illness as a punishment for sins committed in a past life by the ill person or the person’s parents. Therefore, they visit temples or Taoist priests to pray, to perform rituals to ascertain the cause of their ill health and to find solutions to their problems. (Liu, 2005).

Guilt and fear are generally present in the person with cancer and the family, in part due to misunderstanding and a lack of knowledge. The stigma attached to the condition generates fear of being exposed to criticism and disgrace.

Some myths about cancer cause social isolation of the person with cancer within the household. Utensils, clothing and other belongings of the cancer survivor are frequently separated from those of other family members. Younger children are not told that daddy or mummy has cancer thinking that they are “sparing the children from agony” not realizing that this action contributes to the child’s fears. Women with cancer tend to avoid physical contact (such as hugging) with their child, believing that the child, as a consequence, will not miss his/her mother when she dies. One woman was proud to reveal to her doctor that she had kept her cancer at bay by not having any sexual contact with her husband for the past 10 years.

The South Asian Culture And Cancer

The South Asians believe that life- threatening disease or a disability is caused by the sins committed by parents, ancestors or extended family members, or by the patient in a previous life. In some communities it is believed that the mother committed the sin during pregnancy (Sotnik & Hasnain, 1998).

Being resigned to the belief that it is Karma (destiny, based on one’s actions), or God’s will, or even that the person is cursed with cancer, is a frequent way in which South Asian communities deal with the social impact of the disease.

Traditional Tamilian and Ceylonese Tamil communities are fearful of revealing whether a woman has cancer. Matrimonial prospects for their daughters and sisters are reduced. Hence the woman with cancer is blamed for being the bearer of the ‘dreaded disease’ into the family.

Muslim women fear that their husbands may take additional wives or divorce and remarry, the traditional belief being that a women with cancer is unable to perform wifely duties.

The Cancer Language

Language can be very powerful. Social stigmata associated with cancer are so deeply engrained that derogatory terms are commonly used without taking into consideration the psychological impact it can cause on a cancer survivor. Remarks such as “This problem is spreading like cancer” can be rather disturbing for those of us who are living with cancer.

Insurance Coverage

Insurance companies (in circumstances where health insurance exists) leave people with cancer in the lurch as they are considered unproductive and at high risk for serious illness.

Diminished Job Opportunities

Job opportunities are diminished when an adult is diagnosed with cancer. Many Asians have actually indicated that they do not want their employers to know that they have cancer for fear that they may be dismissed or have markedly reduced career development prospects. There was one incident where a woman refused to stay away from work even during her chemotherapy on the spurious grounds that she had pressing deadlines.

The Unspoken

Nobody wants to talk about what most have no knowledge of. The narrations of others with cancer and their survival journeys are spiced up with mysteriously interesting anecdotes.

Death And Dying

To many, the diagnosis of cancer indicates the end of life and thoughts turn to death and dying with the sudden realization that death is lurking around the corner. However there are social expectations that prevent people from speaking about death or anything to do with dying. Community members believe that they do not want the cancer survivor to feel terrible or cause any GRIEF although talking about death in normal everyday conversation may eventually result in RELIEF.

Dilemma of Friends

To speak or not to speak about it, or whether to make a big deal of it, or to ignore it are the cross-roads where, as stated by Linda Richman in 2001: When you get cancer people do not know how to respond.... There is a sense of uneasiness. Old friends stop calling – they could not cope with the reality – strange, it is not they who have cancer – it is I. People do not know what they are supposed to do – speak about it, make a big deal of it or ignore it.

Vicious Circle



Why Does Stigma Persist?

People fear ‘differences,’ ‘the future,’ ‘the unknown,’ and therefore, stigmatize those who embody such characteristics. According to Ainsley et al. (1986): People fear differences, fear the future, fear the unknown, and therefore stigmatise that which is different and unknown. An equally important issue to investigate is how stigmatisation may be linked to the fear of being different.

The cancer survivor has to examine his or her own attitude towards the disease. The uneasiness displayed by society could also be the result of ignorance, fear and lack of familiarity rather than prejudice, cancer usually being considered synonymous with death and dying.

"Reach to recovery" is a concept where women with breast cancer experience are trained to give emotional, practical and informational, non-medical support to newly diagnosed women to help them cope and deal with life after breast cancer. Contact Reach to Recovery International if you are keen to set up a reach to recovery group in your community: ranjit@myjaring.net. For details refer to: www.uicc.org

Knowledge Is Power

It is essential to be in touch with scientific knowledge and the latest research on cancer. This kind of proactive approach helps the survivor and the surrounding community to be open to change, to be realistic and to accept evidence-based results.

Transforming Cancer Survivors First

Dickinson, in 1977, stated that: Patients must be allowed to come to terms, they must grieve and mourn for their lost... body part... lost looks and be helped to adjust to their lost body-image. Anyone who has not had a... similar experience... is unable to understand the horror of the situation. (Dickinson, 1977)

The transformation of a victim to a survivor is a triumphant victory. Yet a death has occurred; and it is critical that this death is acknowledged. The body and mind have undergone major alterations. It is not the same body. A new self has risen from the ashes of the old body and mind (Seymour, 1989. P.122). This is the turning point from the “poor me” status to “I shall live for as long as I can.”

Multiplier Effect

In their daily interactions, persons living with cancer can educate others by communicating their experience in coping with cancer. The adoption of initiatives of this kind by all cancer survivors could help to change the attitude of society. But first, cancer survivors have to rebuild a healthy relationship with society, which is, no doubt, a long and tedious task. Once accomplished, society can be educated about cancer and the possibility of leading a meaningful life after cancer. Such a communication process at the level of individuals can create a positive multiplier effect through “spreading the word.”

Ranjit Kaur, Reach to Recovery International, Geneva, Switzerland

References

Ainsley S., Becker G. and Coleman L. (1986). The Dilemma of Difference: A Multidisciplinary View of Stigma. Plenum Press, New York.

Dickinson M. (1977) Rehabilitating the traumatically disabled adult, Social Work Today, Vol 8, No. 28, p.12.

Goffman, E. (1968) Stigma. Pelikan, Harmondsworth.

Hahn H. (1986) “Public support for rehabilitation programs: the analysis of US disability policy,” Disability Handicap and Society, Vol 1, No. 2).

Hunt P. (1998) Stigma: The experience of disability. Chapman, London.

Liu G.Z. (2005) ‘Best Practices: Developing Cross-Cultural Competence From a Chinese Perspective.’ In Stone JH. (ed) Culture and Disability: Providing Culturally Competent Services. Sage, California.

Richman L. (2001). I’d rather laugh: How to be happy when life has other plans for you. Warner Brothers Inc, New York.

Seymour W. (1989). Bodily Alterations. Allen and Unwin, Sydney.

Sotnik P. & Hasnain R. (1998). ‘Outreach and service delivery to the Southeast Asian populations in the United States.’ in T.S. Smith (Ed) Rural rehabilitation: A modern perspective. Bow River Publishing, Arnaudville, LA.

Swain J., Finkelstein V., French S. and Oliver M. (Eds). (1993). Disabling Barriers - Enabling Environments. Sage, London.

Watson N. (2003) ‘Daily denials: The routinisation of oppression and resistance.’ in Riddell, S. and Watson N. (Eds). Disability, Culture and Identity. Sage, London.