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Dr Alana Lentin a.lentin @ uws.edu.au Everyday Disabilities Everyday Life Week 13 Monday, 28 October 13

Everyday Disabilities

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Traditionally, those considered in society to have a disability have been stigmatised, often kept out of view. Despite considerable efforts by the disability rights movement over the last decades, there are still many stereotypes in existence concerning the disabled, stereotypes which are also classed, raced and gendered in different ways. Disability has been described as ‘fluid’ and, contrary to general opinion, may not be a permanent state. With the increasing medicalisation of society, conditions that may not have been considered disabilities in the past – for example certain learning disabilities – may now lead to early labelling. There are differences of opinion as to whether these are liberating or debilitating labels. As more and more people are living with a disability of some kind, this class will consider what living with disability in everyday life can be understood sociologically and politically.

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Page 1: Everyday Disabilities

Dr Alana [email protected]

Everyday Disabilities Everyday Life Week 13

Monday, 28 October 13

Page 2: Everyday Disabilities

OverviewDefining illness & disability

The ‘sick role’

The medical model

What is normal?

A social model?

Stigma: Goffman and the Cost of ‘Getting Better’

Monday, 28 October 13

Page 3: Everyday Disabilities

Defining illness & disability

Sickness

Chronic illness

Impairment

Disability

Monday, 28 October 13

Turner (1995): Suggests distinguishing between disease (a physical pathology), illness (the experience of discomfort) and sickness (the social consequences of being ill).

Sickness:Health = the absence of disease (most simple definition)

Sickness = interferes with everyday routines. Defined by individuals in relation to their own perceived norms (e.g. ‘I never get flu; this is really unusual’)

We expect to be sick for a certain period of time and then to get better. We are allowed to be sick (e.g. you might get a doctor’s certificate to be allowed off uni or work) but if we are sick for too long a time, we might be suspected to be taking advantage of the system, or to not really be sick.

Here is the boundary between sickness and chronic illness.

Chronic illness:

Scott: If being sick is defined by a circumscribed period of time, those with a chronic illness are people whose disease affects them long-term, sometimes from onset until the end of their lives.

People often experience their illness in relation to how they are viewed by society, so the illness takes on a social significance beyond the symptoms themselves.e.g. Sufferers need to learn to cope with managing signs of the disease that may be perceived as socially embarrassing for themselves and others.

Family members, colleagues and friends may also need to adjust their behaviour/habits due to the individual’s disease (e.g. in relation to diet).

People interviewed by researchers talk about experiencing their illness as a ‘biographical disruption’ (Scott) - your life changes course, everything is affected by the illness.

People therefore need to develop narratives to explain the illness and their new life conditions to themselves. This helps them to make sense of the impact the illness had on their lives. e.g. People might talk about appreciating the little things in life, or living life one day at a time. These are coping strategies.

As we shall see later when we ask ‘what is normal’ in relation to health and disability, these narratives serve to return a sense of social order. As Scott remarks, ‘chronic illness serves as another reminder of a central paradox in life: that, wherever we find breaches of the norm, we find responses that attempt to restore social order.’

People with chronic illnesses are often seen as deviants by society, this is especially the case if their illness is not obvious (e.g. in the second reading).

Impairment:

Sociological term - the ‘physical reality of bodily damage, dysfunction or abnormality’ (Scott).

This compares with...

Disability:

‘The limitations caused by the impairment to a person’s functional ability’.

Handicap is also used to mean the social disadvantages resulting from disability. But because handicap has taken on pejorative connotations, it is now used less.

e.g. of cystic fibrosis which is inflammation of the lungs (impairment) which leads to difficulties in breathing, mobility and tiredness (disability), and making people unable to work long hours (handicap).

The definition of disability is related to the social perception of a condition as disabling.Scott compares short-sightedness which is an impairment which carries very little social stigma to alopecia (total hair loss) which may lead to a person being teased, bullied, etc.

In other words, the disability is often in the eye of the beholder. Even someone in a wheelchair may not regard themselves as disabled, especially if for example, they are a paralympics champion!

We shall look at this idea further when we discuss the question of the normal and the abnormal as largely a matter of social convention, and the notion of stigma - or how certain conditions are perceived as undesirable leading to people being discriminated against as a result of their disability.

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Sickness across cultures

‘Illness is culturally shaped in the sense that how we perceive, experience, and cope with disease is based on our explanations of sickness, explanations specific to the social positions we occupy and systems of meaning we employ.’

Kleinman et al (2006)

Warding off the evil eye

Monday, 28 October 13

As Kleinman et al observe, if doctors wish to treat people in a multicultural society, we need to understand and appreciate why it is that many people seem to respond more to so-called ‘popular’ or ‘folk’ treatments (self-treatment, family care, self-help groups, religious practitioners, heterodox healers, and so forth) than to mainstream medicine (biomedicine).

They do not think that means that mainstream medicine should be abandoned, but that doctors should be less ethnocentric when it comes to ‘lay’ approaches to sickness and healing.

Chrisman (1977): there are four main ways in which people around the world explain illness:1. Logics of degeneration (the body as ageing or run down)2. Mechanics (body parts in need of repair)3. Invasion (germs and viruses)4. Balance (e.g. Chinese concept of yin and yang).

Many cultures believe in the need for protection from the evil eye to save people from being struck down by disease.

Other cultures see particular areas of the body as the key to good general health (e.g. French ‘crise de foie’: liver crisis). There may not be anything scientifically ‘provable’ about these beliefs from a western medical perspective, but they might be ways to protect one from ill health. e,g. believing that the liver is the key to good health might lead one to eating and drinking in moderation which would lead to general good/better health.

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The Sick Role

‘Sickness is something we do rather than simply something we have . Being sick involves interpretation, choice and action.’

Turner (1995: 205)Monday, 28 October 13

Becoming sick therefore is a social process, determined by culture, class and societal expectations (which may change over time, as we saw with the example of the incapacity benefit assessment in the UK).

Parsons (1951): invents the tern ‘sick role’ to describe attitude to illness in the west. Being sick is set up in relation to being well which is seen as the ‘normal state’.Being sick is permitted as long as we take steps to becoming well (e.g. seeing the doctor and complying with treatment). We should understand this in the context of capitalism - people are only seen as ‘useful’ members of society of they can work.

Recent changes to the incapacity benefit scheme in the UK has meant that many people with chronic illness have now been deemed ‘fit for work’ (and will no longer receive incapacity benefit). This is supposed to be in order to cut down on people dubbed ‘benefits cheats’ (bludgers), e.g people who are seen as not wishing to ‘help themselves’ to get better.

But in many cases people with recognisable chronic illnesses that make it difficult, if not impossible for them to work, have been denied benefits. The most famous case, shown on a recent BBC Panorama documentary was of Stephen Hill, who died of a heart attack 39 days after he was declared fit to work by a government contractor and subsequently denied sickness benefits by the Department for Work and Pensions (DWP) in the UK.

This video is an interview with a man denied benefits despite being registered blind [Show film].

To avoid becoming officially sick, people may engage in a variety of strategies, e.g. avoiding seeking medical help (particularly true for men). When sickness starts to encroach on our lives (especially the ability to work), people start to identify as sick and seek help. There is strong impetus to avoid the ‘sick role’.

Once people visit the doctor they become officially sick, e.g. their illness is labelled - diagnosis. The individual is thus formally allowed to take on the ‘sick role’.

The doctor-patient relationship is defined by a power imbalance which can increase due to a person’s class, age, racial/ethnic background, level of education, etc.

Doctors are ‘experts’ and individuals are treated as lacking knowledge of their condition. However, this was not always the case (lay/folk knowledge - now discredited). The internet has also led to a lot of self diagnosis and more power in the hands of the patient (although this is not usually perceived positively by medical practitioners).

In general, the sick role is largely determined by social processes and is ‘performative’ - both patients and doctors play a part. Doctors have props (medical certificates, stethoscopes, etc.) while patients often perform a script expected of them. Diagnosis gives them the legitimacy to perform this role.

Criticisms of the sick role idea:

The sick role assumes that patients will no longer be sick after ‘cure’. However, as we have seen, chronic illness defies this model. The role may become permanent and then may no longer be a role because it cannot be ‘turned off’; it becomes synonymous with the person’s life.

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The Medical ModelMind-body dualism

The medical gaze

Medicalization

‘The medical model is a discourse - a powerful structure of ideas, values and representations which shape individuals’ perception of illness.’

Scott (2011: 118)

Monday, 28 October 13

The medical model / biomedicine - the type of medicine practiced by mainstream medical doctors, hospitals, etc. It is the dominant model of medicine, originating in the West (may coexist with other non-biological forms in non-western contexts, e.g. Ayurveda, Chinese medicine...).

Scott: ‘The medical model is a discourse - a powerful structure of ideas, values and representations which shape individuals’ perception of illness.’

1. Mind-body dualism (recall week 4 on The Body - Descartes): the mind and the body are separate. The body is treated as an organic entity, the patient’s feelings/emotions are largely ignored.

Therefore, the body might be thought of as a machine in need of repair.

Technology will be sought - surgery, drugs, etc. These trump any psychological/spiritual means of healing which are viewed as nonsense/unscientific.

2. The medical gaze

Foucault in The Birth of the Clinic - study of the history of mental asylums. Hugely influential in critique of the medical model as a means of discipline and surveillance. Hospitals/asylums, etc. as ‘total institutions’. The sick role can be seen as an extension of this - the patient must submit to the doctor’s instructions to become well and may face sanctions if she does not.

According to Foucault, the ‘medical gaze’ leads to a dehumanising separation of the patient’s identity from her body.

Doctors are seen as the new sages, replacing wise people with power to heal in pre-modern times.

The human being is reduced to the body - ‘biological reductionism’. The doctor's medical gaze was believed to penetrate surface illusions. In other words the doctor’s diagnosis becomes the ultimate form of authority, trumping any other knowledge or wisdom, or even the patient’s own feeling about what is wrong with her.

Foucault calls doctors the new sages because their diagnosis is thought of as a near-mystical discovery of hidden truth.

3. Medicalization

This is the critique of the idea that the medical model is pervading more and more aspects of life. Normal occurrences in a human’s life which were not treated as medical events are now treated as in need of medical attention. The most obvious example is pregnancy and childbirth. Having a baby at hospital instead of at home is very recent (mid 20th century).

In The Business of being Born, Rikki Lake questions the motives of the medicalization of childbirth in the United States where natural childbirth is becoming a more and more rare phenomenon. The film describes the abnormally high rates of caesarean sections timetabled to suit doctors’ schedules rather than in line with the baby’s readiness. Leading figures in midwifery and obstetrics, such as the French advocate of natural childbirth, Michel Odent, are questioning the potential dangers for the human species of over medicalization of pregnnancy and childbirth. In Hungary, Agnes Gereb, a midwife, is imprisoned for helping women have home births which are illegal.

[Show clip]

Page 7: Everyday Disabilities

What is Normal?Origins of the

norm The Bell Curve

Who should inhabit the

world?

‘If she chooses not to take the tests or not to terminate a pregnancy despite a positive result, she accepts responsibility for whatever the disability will mean to that child and

to her and the rest of her family. In that case, the family, and the rest of society can reproach her for having so-to-speak “caused” that human beings’ physical pain as well

as the social pain he or she experiences because our society does not look kindly upon people with disabilities.’

Hubbard (2011: 115)

From normal to abnormal

Monday, 28 October 13

In order to start to examine why people who are sick or disabled experience discrimination (ableism), we have to look at why we consider being ill or disabled abnormal.This leads to the question, ‘what is normal?’, or perhaps, ‘why do we need the concept of normality’?

Lennard Davis: To understand the disabled body, need to return to the understanding of the ‘normal’ body. This is because the problem does not lie with the person with disabilities, but with the way society constructs normality which in turn makes disability into a problem.

1. Origins of the Norm:

Both normality and disability are new concepts.Davis: The social processes of disabling arrive with industralisation (late 18th/19th C.)

The word normal, meaning ‘conforming to the standard type’, only enters English language in 1840.

The idea of normality enters into usage with the science of statistics (literally science of the state). Statistics requires the notion of the ‘average man or woman’ according to which to judge deviation/difference.

Davis: ‘The average man, the body of the man in the middle, becomes the exemplar of the middle way of life.’The average then becomes the ideal to which everyone should strive/conform.

Quetelet (originator of statistics): ‘Defections and monstrosities disappear more and more from the body... the more deviations from the mean diminish.’ (paraphrased).

The Bell Curve:

The concept of a norm means that most people should be part of the norm. i.e. most of the population falls under the arch of the bell curve (see pic), also known as the ‘Gaussian density function’. At the extremities are those who deviate from the norm.

So the concept of norm is always accompanied by the idea of deviation or extremes. So those with disabilities are thought of as deviants as most people are considered to have normal bodies.

Link to race - The Bell Curve by Herrnstein and Murray.

Eugenics (literally ‘well born’):

All early statisticians (who came up with the idea of the Bell Curve) in the early-mid 1800s had one thing in common - they were eugenicists.

(Famous eugenicists/statisticians include Francis Galton, Karl Pearson...).

The link between statistics and eugenics is the idea that a population can be made normal. The aim of eugenics is for the state to norm the nonstandard. Eugenicists proposed a variety of ideas from sterilisation of the poor, disabled and the racialised, to their extermination.

Eugenics comes along at the same time as another very popular idea of the mid 19th C.: Darwinism. Charles darwin’s idea of the survival of the fittest was interpreted by ‘social Darwinists’ and applied to the human species. The idea was that a nation was like an organism; if it were to survive, only those with the best chances should be allowed to live; anyone who placed the overall health of the nation in danger (e.g. the disabled, but also the poor, blacks, jews, etc.) should be ‘let die’.

Ruth Hubbard: Eugenics reached its pinnacle under the nazis. The first people to be exterminated (before Jews etc.) were the disabled (e.g. children with Downs Syndrome) who were considered a danger for the purity of the nation - euphemistically termed the ‘euthanasia programme’. But Britain and the US had strong eugenics movements too (Winston Churchill advocated for eugenics in Britain in the 1920s). Many racialised women in the US have been sterilised against their wills in recent living memory. Until January 2013, transgender people in Sweden had to undergo sterilisation.

Hubbard argues that although the situation is completely different today, that similar logics are at work in screening for hereditary diseases during pregnancy that lead many parents to make the choice to abort foetuses that may be born and grow up to develop hereditary diseases. She argues that the notion that women have ‘choice’ in making such decisions is misleading.

[click in quote]: ‘If she chooses not to take the tests or not to terminate a pregnancy despite a positive result, she accepts responsibility for whatever the disability will mean to that child and to her and the rest of her family. In that case, the family, and the rest of society can reproach her for having so-to-speak “caused” that human beings’ physical pain as well as the social pain he or she experiences because our society does not look kindly upon people with disabilities.’

She gives the example of Huntington’s disease which is one of the diseases for which people were sterilised by the Nazis. It is a hereditary disease but people don’t develop it until their 30s, 40s or 50s when people may have already had their own children. There is no cure for the disease. However there is now a reliable test to establish the likelihood of develop the disease if enough family members are willing to be tested.

Hubbard argues that this puts people with a family history of Huntingtons in an outrageous position. They may be healthy and don;t know whether they will get the disease. If they and their family members decide to get tested and the test reveals that the foetus has the genes for Huntingtons and an abortion is decided upon, they are basically saying that a life lived in the knowledge that one may eventually die of Huntingtons disease (late in life) is a life not worth living.

Hubbard claims that the problem is ultimately about deciding who should or should not inhabit the world. Many people are disabled due to accidents, so is it right that we make the choice to terminate pregnancies that may result in disabled children. She argues that it is problematic to make judgments about which lives are ‘worth living’ and that these judgments are too similar to those made by exterminationist regimes (eg. nazism). Our judgment of what is a good life is governed by our focus on the achievement of normality as the ideal life. However, as many disabled activists say, it is not up to abled bodied people to determine whether or not their lives are ‘good’ or worth living.

(Take up these questions in tutorial).

From normal to abnormal:According to one radical view, it is the so-called normal that actually creates abnormality.

RD Laing, father of the ‘anti-psychiatry movement’ found that mental health problems such as psychiatry were actually produced within the ‘normal family’ setting.

[Show film]

Page 8: Everyday Disabilities

The Social Model

Monday, 28 October 13

The social model:

In contrast to the medical model’s view that the aim of treatment is to enable people to have ‘normal’ lives, the social model advocates that our percpetion of what is normal needs to shift to accommodate disability.

The social model doesn’t see disability as an individual problem - the ‘personal tragedy’ - but rather society has to adapt to meet the person’s needs.

So, while a person might have an impairment leading to her needing to use a wheelchair, she only becomes disabled if she can’t move around with ease in her wheelchair. The solution is therefore to make the social environment more accessible.

Responsibility is placed on society rather than on the individual to change and adapt.

However, as Scott points out, some people critique the social model because it doesn’t take into account of the fact that soem people are disabled regardless of their social environment, by the illness themselves. They argue that we must take into account what people say about their condition and whether or not they subjectively experience it as disabling.

Nevertheless the social model has been a cornerstone of the fight against discrimination on the grounds of disability - ableism.

Page 9: Everyday Disabilities

Stigma: Goffman and the ‘Cost of Getting Better’

Stigmatising conditions

Ableism

‘The cost of getting better’

Monday, 28 October 13

1. Stigmatising conditions:

Disability and mental health therefore are social rather than individual problems. It is this fact that leads to discrimination or abuse of people with mental or physical disabilities.

Goffman: Notion of stigma meaning a discrepancy between one’s virtual (presented) and actual (privately experienced) selves.Goffman says this results in the perception of having a ‘spoiled identity’. In other words we perceive our disability (our actual identity) as negative and try to keep it hidden. This is particularly the case for people with mental health problems. Many people never admit to having a difficulty, leading to them being unable to cope alone.

There is a difference in the stigma people feel if their disability is apparent or not. But both can be stigmatising.

Scott gives the example of autism, a growing problem affecting more and more people.Autism is often misperceived as a social deviance. People, especially children, may have ‘odd behaviour’ and be told off for breaking the rules, being ‘naughty’, etc. However, they may not have any control over their behaviour. Gray notes that the condition is not stigmatising for the individual themselves who may not be aware that they are no behaving according to the norms. On the other hand, their families may experience what Goffman calls ‘courtesy stigma’ on behalf of their children, e.g. when they are socially embarrassed as a result of their child’s behaviour.

2. Ableism

Ableism is the discrimination against people based on the stigma that exists according to which the disabled are unable to participate wholly in society.

Activists liken it to racism, sexism and homophobia and campaign for disabled people to have adequate access to all spheres of life as well as to have special provisions where necessary.

According to this film, while there is widespread agreement that racism, sexism and homophobia constitute prejudices that disadvantage peopl, there is a common denial that ableism is a real prejudice - most people dowuld not admit being prejudiced against disabled people (discuss in tutorials).

[show film clip].

2. The cost of getting better

In her critical article on the ‘It Gets Better’ campaign against gay youth suicide in the US, Jasbir Puar extends the discussion of suicide among gay youth to the wider questioning of why certain lives are stigmatised.

She argues that some lives, lived outside of the norm - e.g. disabled, queer, trans, etc. - are see as living according to a logic of slow death (either resulting in suicide or de facto unhappy, troubled, deviant, etc.).

She says that in contrast to this, acting against stigma should not mean only trying to ensure access to mainstream life for the disabled. While it is important that disability is depathologised - e.g. not seen as a debility - that in fact for many people, especially the poor, working class, people of colour, disability is in fact the norm.

She argues that we see disability and debility as part of every life; in essence we all become incapacitated - to greater or lesser degree - as a function of old age. Also, according to Nik Rose, depression will become the number one disability in the US and UK over the next ten years. So we should rethink the division we create socially between abled and disabled, which creates an ableism which divides significant portions of the population off into the ‘unproductive’.