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MEDICAL SOCIOLOGY

FRAMING HEALTH: THE SOCIAL CONSTRUCTION OF HOARDING

Aileen Ye

Framing Health: The Social Construction of Hoarding Hoarding is a social stigma conferred by others through the act of labeling. Labels are created by the social construction of illnesses. The discourse that contributes to and creates ones impression of hoarding is influenced by how it has been framed by those in power (medicine, scholarly work and popular culture). My argument is that there is considerable difference in how hoarding has been framed in scholarly work and popular media, and the difference centers on how hoarding has been oversimplified as a social problem (public safety issue) and under-recognized as a coping mechanism for hidden psychological issues. Erving Goffman defined stigma as the process by which the reaction of others, spoils normal identity (Nettleton 2006). Once one is labeled as a hoarder, that identity supersedes all others (father, teacher, Olympic winner, professor, supermodel etc.). Acquiring the label of a hoarder is easy once ones living environment is exposed because it is a visual label (annex 7): meaning that people especially family, friends and neighbors, can see the problem. Hoarding can be identified when there is a compulsive and excessive accumulation of possessions (animals: annex 8, and items of limited value included) and when the individual performing this behavior is emotionally attached to and experiences significant distress when confronted with organizing and discarding. Clutter is accumulated to a degree where it becomes disabling and burdensome, impeding the lives of those who compulsively hoard and those around them. The framing of hoarding in scholarly work and popular culture differ in terms of (1) understanding that the emotions and responses hoarders display on TV are a result of engineered scenarios, (2) definition, information processing

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! and addiction, (3) class, age and reach-of-effect on socialization outside of the home and (4) the oversimplification treatment processes. Most of the reality programs typecast hoarders as people who suffer from a mental disorder, live in squalid (annex 1) and are societal outsiders (Stanley, 2013). These shows engineer scenarios that would not normally occur by creating cleanups-ultimatums from the help-professionals1 . They exploit the shame and stress that hoarders feel and milk their reactions for high drama because it makes good TV. According to Cooleys looking glass self, we see ourselves as in our imagination, how we think we appear to the other person, we see in our imagination the other persons judgment of ourselves, and as a result of what we see in our imagination and how we perceive we are viewed by the other person, we experience some sort of self-feeling such as: shame, humiliation and stress, in the case of hoarders. Stress and panic results because hoarders are unable to engage in face-work or impression management when their integrity is constantly challenged and they cannot avoid an embarrassing scenario once the home is revealed and their reaction to the ultimatum is recorded. However, not all reality programs do so. Hoarders: Buried Alive by TLC, and Obsessive Compulsive Hoarder by Channel 4 shed light on hoarding as a long term illness that requires time to rehabilitate. Therefore for the understanding of the reader, it is important to clearly distinguish what hoarding is and is not. The scholarly stance has since evolved in its framing of hoarding behavior as an illness. Hoarding as a disorder is not a result of medicalization. In 2012, DSM-IV-TR stated that hoarding is one of possible symptoms of obsessive-compulsive personality disorder. Before DSM-5, hoarding was not considered a mental disorder or illness in its own entity but !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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A team of medical professions and professional organizers.

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! as a mental health problem that is considered a symptom of pre-existing conditions such as: dementia, schizophrenia and autism (Mataix-Cols & Pertusa, 2012) as well as depression (Frost, Steketee, & Greene, 2003) and dementia but is most commonly found in OCD (Saxena, 2007). In 2013, DSM-5 listed hoarding disorder as a discrete disorder rather than being a symptom of OCD, in addition to an expanded diagnostic specifier that helps in identifying how hoarders process information, describing good or fair insight2, poor insight3 and absent or delusional insight4. (American Psychiatric Publishing, 2013, p. 8). Identifying that hoarders have problems with information processing and not with addiction, show that individuals compulsively hoard, not because they are eccentric and addicted to the act of hoarding itself. According to Frost et al (2003): Information-processing deficits include problems with making decisions, problems with organizing (information and possessions), and possibly problems with memory. Hoarding subjects (both clinical and nonclinical) have shown clear deficits on measures of decision making (Frost & Hartl, 1996). Not only do hoarders have difficulty deciding on whether and where to keep possessions, they often have problems making any kind of decision. Hoarders seeking treatment have also reported having difficulty organizing and categorizing information and possessions (Steketee, Frost, Wincze, Greene, & Douglass, 1999), although this deficit still needs empirical confirmation. Finally, nearly all compulsive hoarders complain that !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Recognizes that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are problematic. 3 Mostly convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary. 4 Completely convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary.
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! they have poor memories, which suggests potential memory deficits along the same lines found among other OCD patients (Savage et al, 1996). (p. 324) Therefore, unlike what is commonly assumed in popular culture, hoarding is not an addiction. According to Moran & Patterson (2011), an addiction is dependent on pleasure as a reward. Addictions can modify the brain structure and function whereas specific brain anomalies such as damage to the frontal lobe, are associated with higher incidence of abnormal hoarding behaviors. Individuals do not knowingly hoard but rather, it develops as a lifestyle pattern after a long period of time. In contrast to scholarly literature, popular culture, frames hoarding as a middleaged and lower-classed syndrome. Though, it supports scholarly work in the identification that the people who live with hoarders are affected as well, it does not expand on the reach-of-effect on socialization outside of the home. Hoarders by A&E, My Hoarder Mum and Me by BBC, and The Hoarder Next Door structure plotlines around hoarding as a crisis in need of management because of the threat of eviction, divorce or investigation by child and family services. According to Cooleys looking glass self, we see ourselves as in our imagination, how we think we appear to the other person, we see in our imagination the other persons judgment of ourselves and as a result of what we see in our imagination and how we perceive we are viewed by the other person, we experience some sort of self-feeling such as shame, humiliation and stress in the case of hoarders. These shows exploit the shame and stress that hoarders feel and milk ultimatums from the help-professionals (annex 2) for high drama because it makes good TV. The end goal is to show a before and after picture (Annex 3) of a cleaned up house. Most of the hoarders who are filmed are middle-aged and from the lower classes. As hoarding is syndrome that

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! takes time to develop it is understandable that most of the subjects are middle-aged or elderly. However these programs fail to mention the effect hoarding has on the childhood experience and primary socialization. According to Sorenson 2011, Toil, Frost, Steketee, and Fitch state that: living in a severely cluttered environment during early childhood is associated with elevated rates of childhood distress, including less happiness, more difficulty making friends, reduced social contact in the home, increased intra-familial strain, and embarrassment about the condition of the home. These subjects reported a high degree of rejection attitudes toward their family member; this was correlated to the severity of hoarding and participants perceived insight and amount of clutter during their childhood. Rejection attitudes are significant as they may indicate fewer resources for support and increased isolation from family. (Sorenson, 2011, p.10) showing that hoarding has lasting effects not only on the family of the hoarder but outside of the home as well. Televising only hoarders from lower classes is misleading as, quoting Professor Debra Street, rich people who hoard can be labeled as collectors, a label less stigmatizing than those who are not rich and labeled as hoarders (annex 4). Almost all the hoarders televised are portrayed as lower classed and living in squalor. According to Stanley (2013), it includes misconceptions that hoarders cannot recognize that a food item is rotten and that they are living in a rotting, mold or pest infested and hazardous environment (annex 5). Stanley also criticizes reality televisions depiction of the oversimplified approach to treatment for hoarding adding, it is ineffective to clean out a hoarded home in a

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! weekend, through pressure or coercion, or at a pace faster than the client can tolerate. Stripping away a persons coping mechanism before a better one has been gradually established is cruel and unethical and usually results in more severe hoarding. Lack of education to treatment and handling of hoarders is due to the fact that hoarding has not been an issue that has been openly discussed in both personal lives and wider society. People do not talk about it within their families and social groups, neither do they encounter educational information in lifestyle magazines, brochures at clinics, or health advertisements (annex 6). Unlike the quickfix-cold-turkey and crisis plotline illustrated by TLC, the treatment for hoarding (State of Victoria, Department of Health, Ageing and Aged Care Branch, 2012) is complex due to the psychology of hoarders: Hoarders have highly personalized reasons for hoarding, have ambivalent and avoidant personality lifestyles, are uncertainty about self and others which leads to an object-driven compensatory behavior. Treatment is a multifaceted approach that requires: accommodating interfering variables (for instance, rigidity, control, reluctance for treatment) and assessment of their specific contexts to determine broad and individually tailored treatment goals. It also requires collaboration such as liaison with health and welfare. Therapy is not a quick-fix, the outcomes are based on specifying goals, and the focus is on harm minimization (similar to treatments for drug addiction) (p. 25 26). Reality TVs portrayal of hoarders illustrate what scholarly work have observed. A hoarder maintains a range of enduring beliefs and thoughts, proving challenges to treatment. They believe that: Someone will find the items they hoard useful. They should never throw anything away especially if it reminds them of a person. They respond badly if family members attempt to declutter because they have to know where everything is. They do not evaluate how helpful

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! the clutter and mess is because these things are part of their identity and they do not know why. So throwing things away akins to rejecting them and keeping them is a form of self-acceptance. For treatment to start: a hoarders obsessive focus on things needs to shift to skills about relating with others. The person over-values hoarding, which is underpinned by experiential avoidance, that is possessions are seen as basic to their sense of identity and safety. Better management of emotions is also needed as this is the key to relationships and problem-solving. The fusion of self and objects brings resistance and lack of insight in the hoarder. (p. 26) Unfortunately successful treatment of hoarding is rare (Frost et al, 2003) no matter how willing the individual may be to cooperate, with little progress or even possibilities made in terms of preventive care. Problems with organizing and memory, indecisiveness and the inability to categorize cannot be used as earlydetection indicators without confusing them with other problems. Additionally, lower income groups will have difficulty obtaining treatment because of insurance. In conclusion, the considerable difference in how hoarding has been framed in scholarly work and popular culture causes it to be seen as a social nuisance rather than a legitimate sick role. It is difficult to apply the sick role to hoarding disorder and hoarders are not accorded the privilege to act sick and be temporarily exempt from normal role responsibilities, further isolating them is the fact that it is hard to cure. The importance of understanding that there is a difference because of: engineered scenarios, lack of clarity between information processing deficits and addiction, misconceptions that hoarders are mostly middle-aged, elderly and from

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! lower classes, a lack of awareness about its effect on socialization outside of the home for children and the oversimplification of treatment processes, is crucial to understanding (1) how individuals come to acquire the hoarder label, (2) what effect the label has on them and those around them, (3) how doctor-patient interaction creates such labels, (4) how people decide they are ill enough to seek a doctors help and (5) how doctors and patients negotiate a diagnosis. Finally it is important to understand how status and power is central to the labeling process and that mental illness is a label that is attached to individuals when their behavior does not conform. Additionally, popular culture communicates ideas to the layperson in which hoarders are viewed societal deviants who are mocked, avoided, ostracized, discriminated and forcefully treated.

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! Bibliography

American Psychiatric Publishing. (2013). Highlights of Changes from DSM-IV-TR to DSM-5. American Psychiatric Association.

Antila, N., Buchdahl, H., Dinh, J., Feit, L., Kessler, L., Prentice, P., et al. (Writers). Hoarders: Buried Alive [Motion Picture]. Discovery Communications, LLC.

Chan, M., Severson, D., Kelly, M., Butt, G., McKillop, D., Bryant, E., et al. (Producers). (2009). Hoarders [Motion Picture]. A&E Television Networks, LLC.

BBC, My Hoarder Mum and Me (2011). [Motion Picture]. ! Frost, R., Steketee, G., & Greene, K. (2003). Cognitive and Behavioral Treatment of Compulsive Hoarding. Brief Treatment and Crisis Intervention (3), 323 - 337.

Mataix-Cols, D., & Pertusa, A. (2012). Annual Research Review: Hoarding disorder potential benefits and pitfalls of a new mental disorder. The Journal of Child Psychology and Psychiatry , 53:5 (5), 608 - 618. ! Moran, D., & Patterson, J. (2011, March 2). Is Hoarding an Addiction or Purely a Copulsive Behavior? Retrieved July 20, 2013, from Psychologytoday: http://www.psychologytoday.com/blog/when-more-isnt-enough/201103/ishoarding-addiction-or-purely-compulsive-behavior

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! Nettleton, Sarah (2006). The Sociology of Health and Fitness. Cambridge, UK: Polity Press. p. 95. ISBN 978-0745628288. ! Saxena, S. (2007). Is Compulsive Hoarding a Genetically and Neurobilogically Discrete Syndrome? Implications for diagnostic classification. American Journal of Psychiatry (164), 380 - 384. ! ! Smith, E. (Producer), & O'Leary, S. (Director). (2012). The Hoarder Next Door [Motion Picture]. Channel 4. ! Trumble, C. (Director). (2011). Obessisive Compulsive Hoarder [Motion Picture]. Channel 4. Stanley, D. (2013, March 25). Do Reality Shows accurately portray hoarding? OCD and Hoarding the Experts wiegh in. (Everydayhealth.com, Interviewer) Everydayhealth.com. ! State of Victoria, Department of Health, Ageing and Aged Care Branch. (2012). Discussion Paper hoarding and squalor.

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! Annex Annex 1: Hoarder living in Squalor

Hoarder living in squalor and not an elderly.

Annex 2: hoarder under instruction from help-professionals

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! Annex 3: before and after pictures

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! Annex 4: There are rich hoarders as well as hoarders who are from lower classes

Annex 5: rotting, mold and pest infested environment

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! Annex 6: How hoarding brochures depict hoarding as a public safety issue

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! Annex 7: Hoarding exposed and how it can be a visual label once exposed.

Annex 8: animal hoarding from Animal Cops Miami, animal hoarding was once only seen as a form of animal cruelty and neglect.

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