How is Stigma Attached to Illness explored in Literature?

Hey Guys, 

I recently posted an essay I wrote on Blade Runner and Metropolis and decided I would share another. I read a book called 'PWA - Looking Aids in the Face' by Oscar Moore a few months ago. The book is comprised of many articles that Moore wrote on his experience with Aids. The book inspired me to write this essay on how stigma attached to illness is explored in literature. 
 

Stigma can be defined as, “The shame or disgrace attached to something regarded as socially unacceptable.” (Stead, 2013) Those who feel stigmatised are made feel outcast and are marked as being different in some way that impacts on them negatively. It is a powerful tool that takes social control and can marginalise, exclude, reject and dangerously implement power over people and ruin their lives. The feeling is often created due to a person believing that they have brought shame upon themselves in some way. In this essay I intend to discuss the effect that stigma has on the diseased body and the disjunction of body and mind that is caused by stigma as explored in literature.

Once HIV was discovered by scientists, social responses of fear, denial, stigma and discrimination accompanied the epidemic. Because of this, discrimination against people living with HIV rapidly spread, fuelling anxiety and prejudice against sufferers and their families. It is fair to say that people with HIV suffer not only from the physical and medical concerns the disease brings but also the social stigma attached to having ‘contracted’ HIV. The body becomes a vehicle of stigma and is eventually separated from the mind. This means that people no longer feel in control of their body and lose control of the future that once was. The feeling of having no control of a disease that is essentially eating your body alive can transgress between body and mind and can confound the codes between morality, suffering, sickness and health. As a consequence of this, people are labelled as being ‘sick’ and become separated from their ‘normal’ social world.

Often, people living with HIV are seen as shameful as the infection is sometimes associated with minority groups or behaviours such as homosexuality, drug use and prostitution. In some societies, HIV is seen as the result of personal irresponsibility. There are approximately 96,000 people living with HIV today in the UK (National AIDS Trust). There is a stigma and discrimination associated with sufferers the world over. Many of whom have been rejected by their families, their loved ones and often by their communities. Therefore, people who feel infected are made feel alienated as they have contracted the disease and feel that it is punishment for their behaviour. Societal pressure and the implication that they have acted irresponsibly with their bodies’ adds to the pressure that the person condemns themselves with.

While writing “AIDS and its Metaphors”, (1979) Susan Sontag draws on her own experiences as a cancer patient, as well as her friendships with people affected by AIDS. The message Sontag portrays is that friendships, despite possible fallibility, can be strong and resilient even in times of crisis. The story suggests that conversation can quite literally create a healing environment mentally.  Sontag suggests that the mind and a positive environment can transcend the diseased body. The negative effects of stigma have repercussions on both body and mind and this highlights the duality of the two.

Similarly to Sontag’s essay, “Philadelphia” 1993 directed by Jonathan Demme, explores ethical and moral issues manifested by AIDS and its relationship with homosexuality. It suggests that AIDS is seen as a crime against the self. The film gives us an insight in to people who believed punishment was the only viable resolution for the ‘promiscuous conduct’ that is often associated with AIDS. The character Beckett laughs at his Lawyer Miller’s TV commercial when he is in hospital, saying “if you or someone you know has been injured through the fault of others, you may be entitled to legal remedy” (Philadelphia, 1993). This is an ironic reaction to a statement that questions the innocence of the ill and even blames them. In the context of HIV, the implication of Miller’s advert is essentially that if your pain and suffering has been caused by another person and not yourself, then you may be entitled to legal redress. This may well imply that the people who transmit HIV to an individual can be deemed ‘guilty’ – which is in contrast to Miller’s own views on homosexuality. Demme uses the term “negligence of other” (Philadelphia, 1993) in court. In legal terms ‘negligence’ can mean carelessness and in Beckett’s case, it refers to irresponsible actions which a person could essentially avoid. This is a way to incorporate a sense of guilt and blame on AIDS victims as they spread the disease.

The image of AIDS portrayed as a crime in Philadelphia is depicted also in Sontag’s essay “AIDS and Its Metaphors”. Sontag’s essay shows us society’s use of military to describe illness as a type of invasion against the body, and our efforts to stop the spread of the disease as a war. Such an idea can imply the use of force and violence. In her essay, Sontag suggests that society judges the ill diseased body and labels them as either guilty or innocent. She states that, “innocence, by the inexorable logic that governs all relational terms, suggests guilt.” (Sontag, p.99). Sontag is insinuating that society describes AIDS in two ways. The actual illness can be seen as an invasion of the body, however when the focus is transmission, a different image is invoked – pollution of the body. This in turn can segregate between healthy people and those who endanger their purity with the chance of disease or pollution. 

Likewise, in ‘Philadelphia’ we see the segregation between the diseased body and the healthy body. When Beckett is called into a conference room by his work colleagues, Demme shows us an obvious divide between Beckett’s seat and where his employers are sitting by getting clever camera shots of them. This division between them shows us the negative feelings of the law firm and sets a tense scene for firing Beckett.  We see a contrived divide between society and AIDS sufferers that is clearly depicted through the judgmental looks from the lawyers as they assume promiscuous behaviour and homosexuality as the cause of Beckett contracting AIDS, thus putting blame on him.

In Philadelphia, we see discrimination against Beckett because of his AIDS once the physical effects of his illness become impossible to hide and the law firm fire him as they fear that his disease will affect their clients. The two main behaviours and therefore lifestyles that are often linked to the transmission of AIDS are homosexuality and drug use. Both groups were repressed and let down by society when Philadelphia was produced as well as when Sontag’s essay was published. Sontag describes AIDS as indulgences and “addictions to chemicals that are illegal and to sex regarded as deviant”. (Sontag, p.113)

The first outbreak of AIDS left society terrified of being infected by the illness itself and also worried people about the transmissions of ‘sins’ attached to having AIDS. When Beckett meets Miller at his office they share a mutual respect of one another until Beckett tells Miller that he has AIDS. This leads to Miller physically moving away from Beckett and he takes note of everything he touches in his office. Demme focuses the camera on the objects that Beckett touches rather than focusing on the men’s facial expressions. Instead we are shown brief shots of Miller looking very judgmental and weary of Beckett. This scene shows how people with AIDS are met with uncertainty and sometimes fear. Within a matter of seconds Beckett goes from being equal to Miller to being inferior.

AIDS, unlike most diseases, does not just infect random individuals, instead, it is thought of and seen to be a consequence of a person’s actions. Because AIDS is sexually transmitted, it is easy to connect the disease to images of the ‘Plague’ or in Sontag’s case a war (Sontag, p.76. The disease is sent as a punishment against those who participate in deviant behaviour which creates stigma for a sufferer. One main problem portrayed in Philadelphia was the lack of empathy society had towards people infected with AIDS, due to the promiscuous actions associated with the disease. We see Miller talking to his wife about his confusion regarding homosexuality. He has consoled himself with the belief that he is fighting the case for Beckett as he does not agree with discrimination in general rather than the disease itself.

The stigma attached to AIDS often engrosses people to the point where they forget that the person is suffering. Because of this, they are not quite as sympathetic as they would be with a person who has a disease that they could not perhaps have prevented. Sontag laments that these actions sadly seem to be the values of society. During the initial outbreak of AIDS, many people viewed homosexuality as a type of crime against what nature had intended for the infected body. The followers of many religions believe that homosexuality is to be regarded as an act of sin that deserves some kind of punishment. As a result of this, AIDS is sometimes seen as a punishment for immoral conduct that an individual chooses to take part in.

In Oscar Moore’s ‘PWA – Looking AIDS in the Face’ (1996) we are given an account of his daily battle with HIV and the way in which he coped with not only the illnesses effects on his body but his encounters with society. The perception of his body by people in his life made him feel like an outcast because of his illness. Moore’s original diagnosis was HIV. Years later he was to discover that the atrocious pain that he was experiencing in his stomach was not caused by his excessive lifestyle of consuming extreme amounts of cocaine and ecstasy but by the transition to AIDS and the development of shingles in his guts as part of that transition. To him this meant that he was no longer a person, he was no longer Oscar Moore; he was now a ‘Person with AIDS’.

Sontag’s ‘Illness as Metaphor’ (1978) was written when she was a cancer patient herself which opened her eyes to the world of illness and the impact it can have on more than just your body. The book shows how perceived ideas and myths surrounding certain illnesses can add massively to the patients suffering through creating unnecessary stigma. Sontag’s liberating approach to illness is similar to that of Oscar Moore. She shows us cancer for what it really is, just a disease, a disease that can become part of your body, and not something to be ashamed of or detach yourself from.

Sontag wished to show us that cancer is not a curse or a punishment for a ‘sin’ and that it should certainly not be an embarrassment or bring shame to the sufferer. Sontag discusses the term ‘cancer personality’ that she came across while she was ill. She discusses the blame and stigma such language can create for the patient and believed that such a negative term impedes on the patient’s recovery. Instead she preferred to use the term ‘disease-producing lifestyle’ to describe both the physical and mental changes that cancer patients often quite understandably go through when they are ill. Labelling people as having ‘cancer personality’ (Sontag p.48) makes them become the disease rather than seeing them as a person with a diseased body.

When a patient is diagnosed with a stigmatised disease it can be treated as a malevolent, undefeatable predator and not something a patient feels they can overcome. In turn, people with stigmatised diseases will be demoralised and defeated by their illness. Sontag believed that the only way to rectify this problem would be to demystify the disease and give people a better understanding of what a person’s body is actually going through so that ill people do not have to feel outcast by their own bodies. Sontag believed that demystifying the illness would remove the stigma and this would alleviate the guilt, blame and shame that sufferers so often render upon themselves.

Similarly, Oscar Moore opened his life to the public with his journal in ‘The Guardian’ in a plight to open people’s eyes to the reality of a person with AIDS, and the physical suffering they can go through. If it is perceived that someone has done something previously that contributed to their illness, they often feel stigmatised. The idea of having ‘caught’ or ‘contracted’ an illness contributes to people stigmatising sufferers as they believe that the illness is their own doing. We see how dramatically AIDS erodes Moore’s body leading to his death in ‘Looking AIDS in the Face’. Moore does not feel sorry for himself, he writes his journal with unflinching honesty and a wry, black humour, as he charted his body’s physical descent.

The main culprits that create stigma are often the media. Governments use propaganda which could be construed as unscrupulous as they use fear to imply the risk of smoking. They use images of diseased lungs and harsh taglines such as “Smoking Kills” and “Smoking seriously harms you and others around you”. These No Smoking campaigns don’t acknowledge the feelings of guilt, shame and blame that they enforce on people who are suffering from diseases. Lung cancer is an illness that so often receives negative attitudes creating stigma as they are often believed to have contributed to their cancer. Though the body is suffering, the ill person does not feel entitled to empathy or even entitled to suffer. In the series ‘Breaking Bad’ people comment on how Walter White got lung cancer but never actually smoked, perhaps implying that if he had smoked he would have deserved the illness.

A 2009 German AIDS awareness group, Regenbogen released an advert using images of famous world dictators such as Adolf Hitler and Saddam Hussein to convey the message “AIDS is a mass murderer”. This advert used shock imagery to make people fear contracting the disease. This advert was attacked by the HIV charity Terrence Higgins Trust as they believed that the advert would stigmatise people who already have the disease. This advert is a prime example of the negativity adverts can exude that does nothing but increase people’s fear of contracting HIV and is more likely to discourage people from being tested. In the UK, one in four people who have HIV is not aware that he or she has it and negative reinforcement is likely to deter people from wanting to be tested. HIV is no longer a death sentence in the developed world as treatment is widely available and allows people with HIV to live a healthy life. This advert is indicative of the stigma attached to HIV. Most propaganda does not promote any positivity and proliferation of stigma without encouraging safe sex leads to the feeling of disenfranchisement of those who already have the disease.

A culture of shame is often brought upon people with HIV because contracting HIV is often believed to be associated with acts that some cultures see as immoral or abhorrent behaviour. By blaming certain people associated with HIV, society can excuse itself from the responsibility of caring for such groups of ill people. Because of this, sufferers often feel excluded from society and allow the disease to be transformed from an affliction of the body to an affliction of the mind.

In today’s society people have a heightened sensitivity regarding the language they use when talking about a person with a mental or physical disability. The ‘r’ word campaign was launched in 2007 to stop people using the word ‘retard’ as a derogatory term. The Spastic Society also changed their name to Scope to prevent people from labelling and stigmatising people with cerebral palsy due to the adoption of the word ‘spastic’ as a derogatory term. The main inspiration for the change of these names was because mentally and physically disabled people did not want to be labelled or seen differently – they wanted to be treated equally. When it comes to being ill, people are put into categories through use of language. When we talk about the diseased body and AIDS in particular we use words like ‘contracted’, ‘infected’ and ‘caught’ which all insinuate blame. The physical disabilities that people are born with or develop are the same as AIDS in their immutability, the only difference is the stigma attached to AIDS victims.

Oscar Moore identifies with this when he becomes a ‘Person with AIDS’. He talks about nurses referring to his ward as the ‘naughty boys ward’ (Moore, 1996, p.28 ). Moore introduces us to his world, the ward in a Glasgow hospital where as a gay man with AIDS, he was treated with great distain by the nurses. ‘Accentuate the positive; accessorise the negative” was Moore’s saying which almost suggests that his ever growing collection of medication, syringes and his ‘Hickman line’ had become part of his body. Moore tried to stop the connotations of having AIDS from integrating into his personality despite the stigma. Moore's writing was distinguished by its light-hearted humour, and the brave enlightened way in which he shared his story with the reader until his death.

AIDS quite literally led Moore into darkness when the virus slowly destroyed his eyes and eventually completely took his vision, "Blind terror” (Moore, 1996, p.163). Moore uses his column as a weapon to both fight the virus and the stigma attached to it. Though HIV can obliterate a body enough to render medicine useless, it does not prevent those suffering from it from fighting back intellectually. Not only did Moore’s journal help him fight his own battle, they also greatly contributed to the battle against ignorance and homophobia surrounding AIDS.

In Victorian England, the stigma of getting a disease could transcend class. Dickens used smallpox as a tool in ‘Bleak House’ to prove that illness is more than a physical disease but instead a type of ethical illness which was infecting English Victorian society (Dickens, p.113). Dickens’ aim was to show through disease that all people are in fact vulnerable to catching a disease or illness regardless of their class or background. The diseased body effectively levels the playing field by exposing the vulnerability of the body and its separation from a person’s moral standing, class or nature. This understanding of disease is similar to the conclusion that is reached by Miller in Philadelphia when he decides to fight for Beckett.

In ‘Philadelphia’, the idea that AIDS is almost a crime committed by the AIDS sufferer inflicts feelings of guilt, shame and blame upon infected people. Sontag states that “the shame” associated with AIDS is “linked to an imputation of guilt”. Similarly, in the song ‘Philadelphia’ and in Moore’s writing, we are painted a picture of the struggle that people with AIDS feel. The lyrics of the eponymous song ‘Philadelphia’ read, “Tell me I’m not to blame, I won’t be ashamed of love” - this captures the struggle a homosexual can be faced with when his disease physically displays itself to the world without his say in the matter. The implication of the song is that he wishes to be himself and not be ashamed about his illness or who it is that he chooses to love.

In ‘Philadelphia’ Beckett’s previously hidden sexuality is revealed when his law firm become aware that he is ill after his body lets him down. Comparatively, the way in which AIDS sufferers’ sexuality is made obvious through their illness, “illness flushes out an identity that might have remained hidden” (Fisher, p.111). The uncontrollable nature of the disease means that not only is a victim of AIDS suffering with the medical aspect of the illness, they are also faced with people knowing their personal identity.

Through understanding the way that the owner of a diseased body is made feel by stigma we can better understand the blurring of the boundaries between body and mind. The work of Oscar Moore in putting to paper his personal account of a disease that may be considered the most stigmatised in human history highlights the difference between the diseased body and the individual. Stigma attached to AIDS is due to the lack of understanding and the culture of mass media. Sontag’s exploration of stigma and illness examines the effects of society and more importantly how a person’s loved ones can have a profound effect on the suffering person’s future. She believed that the diseased body should not be treated as a reflection of the character of the person and understanding this at a fundamental level would help to alleviate stigma. (Sontag, p.80) ‘Philadelphia’ uses the culture of mass media to create awareness of the plight of those affected with HIV/AIDS. It casts in iron the unreasonable discrimination that is brought down upon those who have been condemned to a lifetime of suffering from a disease for which there is no cure.

The shocking nature of these texts violently brings the issues that surround stigma and discrimination to the public conscious. The dissonance between mind and body is emphasised by exploration of the diseased body and the way it is perceived. Societal perception of the diseased body has a stronger influence than personal perception. This damages the sufferers sense of self and removes the sense of control from the sufferers own body. The similarity between the treatments of diseases in these texts emphasises the deep rooted nature of the issue. The constant nature of stigma and its attachment to disease and the unknown can be traced back as far as Victorian England and beyond. This perhaps alludes to the subconscious instincts of protectiveness that makes up human nature.

Bibliography

“Aids ist ein Massenmoerder” Commercial, Youtube, Regenbogen. [Accessed: 14 Apr 2013] <http://www.youtube.com/watch?v=7FSF5xA36F0> 

“Breaking the Stigma Associated With Mental Illness”, Kendra Stea, Crisis Prevention Institute [Accessed: 04 Apr 2013] <http://www.crisisprevention.com/Blogs/Care-Connections-Balancing-Care-With-Safety/February-2013/Breaking-the-Stigma-Associated-With-Mental-Illness>

Charles Dickens, Bleak House (London, Bradbury & Evans, 1853) p.131

“Cancer Man” Breaking Bad, dir. by Vince Gilligan, DVD (New York, AMC Networks, 2009)

Oscar Moore, PWA: Looking AIDS in the face (Kent: Picador, 1996) pp. 28, 126

Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (London, Penguin, 1979)

Living with HIV in the UK” National AIDS Trust, [Accessed: 01 May 2013] <http://www.nat.org.uk/HIV-Facts/Statistics/Latest-UK-statistics/People-with-HIV-in-UK.aspx>

Philadelphia, dir. by Jonathan Demme (Crossbow Studios, 1993)

Robert N. Fisher, Suffering, Death, and Identity (Amsterdam, Rodopi, 2002) p. 111

 “Romping Hitler Aids ad criticised” BBC News, [Accessed: 24 Apr 2013] <http://news.bbc.co.uk/1/hi/8240793.stm>