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