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, …

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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  • 1. Everyday Disabilities Everyday Life Week 13 Monday, 28 October 13 Dr Alana Lentin a.lentin@uws.edu.au
  • 2. Overview Defining 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
  • 3. 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.
  • 4. 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 (selftreatment, 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.
  • 5. 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).
  • 6. The Medical Model Mind-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
  • 7. What is Normal? Origins of the norm The Bell Curve Who should inhabit the world? From normal to abnormal ‘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) 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’):
  • 8. 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.
  • 9. 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].