Perception of Self Through Social Role

In this study, I will use literature as a dictation of culture; working with the life stories of real people with disabilities, I will use first-hand accounts to back up more significant social claims surrounding the socially defined body. Through the analysis of interviews done by disabled people from Australia and America as well as a study of a French study on Trisomy 21, I will be able to draw evidence of the global stigmatization of disability that occurs to all sufferers. Furthermore, I will expose the factors that mitigate the effect size of stereotypes for disabled people who were, “born that way:” or “became that way”.  The cases brought up in the interviews and subsequent studies revealed that more often, people with congenital disabilities are portrayed more negatively- as something beyond human norms, a burden, or unchangeable. On the other hand, people who become disabled experience some of the same discrimination on a societal level but largely face more stigma surrounding the re-definition of how their body is perceived by others. They are forced into a sudden adaptation to a new social role as well as a new body. This disability studies project will accumulate sociological research studies on word usage statistics, essentialism, body image as a mirror of culture, the anthropological psychosocial model of disability, theories of otherness, and the cause and effects of cultural stigmas, I hope to describe the experience of the socially defined body, discrepancies between how disabilities are treated based on the type and onset to reveal how classification impacts the disabled person’s idea of self in a social world. 

“One billion people, or 15% of the world's population, experience some form of disability” (Worldbank). Any physical or mental condition (impairment) that makes it harder for the person with the condition to engage in particular activities or interact with the environment around them is referred to as a disability. Considering that disability is a spectrum of impairments with no foreseeable timeline of impact it can be asserted that people experience disability at various points in their life and in a multitude of ways. That ebb and flow throughout a lifetime create dissonance within people’s view of self as a physical and social creature. The two realms of disability that I will discuss congenital (a condition or disorder present at birth) and acquired (a condition that develops after birth, its onset is not hereditary but rather enviormental (accident)). Through this project, I aim to delve deeper into the societal considerations of disability and better distinguish how those who become disabled are treated differently than those who are born disabled. By using personal memoirs for analysis, I have the ability to further connect the social stigmatization of physical impairments to their psychosocial burden on the afflicted. Furthermore, I will discuss how the resulting typification that emerges from such differences reflects changed notions of body and world- inborn disability- and body and self-becoming disabled. The texts will serve as evidence to evaluate the differences between the disabled experience.  

Before the significance of the theories described below can be discussed, one must first comment on the model of disability that allows such discourse to happen- the social model. The social model of disability emphasizes structural obstacles, stigmatizing beliefs, and unintentional or purposeful social exclusion as factors that make it difficult or impossible for individuals with disabilities to engage in their desired functionalities. I contextualized this project through the lens of the social model of disability in order to understand how societal exclusion and fear shape the stereotypes of disabled people. This model recognizes the person apart from their capabilities, people are disabled by barriers in society, not by their impairment or difference. It was important to use this model to highlight biases within the attitudinal barrier put in place by normal vs abnormal stigmatization. Within my project specifically, I looked at how the onset of disability, if it was acquired or congenital, influenced what stereotypes are drawn about the person and to what degree. This realm of disability studies gives importance to sociological perspectives including stigmatization and the social organization of bodily difference, especially within deviant populations (the Disabled Community). These topics plainly discuss the negative social attributions that are inherent to their distinction by able-bodied people as societally atypical. For example, the symbolic interactionism theory examines the dynamic of encounters and the subsequent creation and categorization of people into deviant social groups based on the presumptions formed through the encounter. Disability has borne witness to social intrusion for quite some time, in part because symbolic interactionists contend that it disturbs social interactional norms. Due to the conflicting layers of judgment created by visual and verbal inconsistencies, it might result in "sticky encounters." Therefore, disability is subsequently presented as a type of deviation (Becker, 1973).

A large portion of interactionism has concentrated on how the disabled person manages their disability so that the disruption is minimized in order to avoid the social penalty (stigmatization, otherness) of being labeled as a deviant. The common social penalties mentioned above can be labeled as a stigma.

Stigma can be defined as:

“Social devaluation based on a discrediting difference or identity” (Goffman 1974).

Thus stigma is a defining aspect of the disabled experience. Sociologist Erving Goffman studied the social creation of stigma within disability studies to investigate how social reactions to injured bodies are influenced by the backdrop of 'normality' assumptions made by the environment. According to Goffman, impairments, which are generally regarded as physical differences, are not intrinsically stigmatizing; rather, they become such through interaction when meanings created by other people are attached to impairments that deviate from accepted physiological standards.

According to Goffman (1974), the term:

"'normal' refers to a prized cultural status bestowed upon people who do not negatively depart from the specific expectations at hand". 

Able-bodied people establish and uphold the distinction between "normal" and "stigmatized" which are social roles that have historically been linked to negative unconscious bias surrounding Disabled Persons.  

In a society that values beauty, those who deviate the farthest from the traditional standard are stigmatized the greatest. People are more likley to hold negative beliefs about disabled people with very visable differenes due to the unfamiliarity and fear of what is different. People know from lived experiences that being different is a bad thing as it deviates one from positve societal treatment and rewards. Therefore people shame those who are atypical to raise their own social status in comparissom The physicality and objectification of the body as it is seen in social contexts is used to distinguish bodies as "normal" or "other." Level of impairment, level of visability, disability type, age/gender of the induvidual, and the onset of disability are all mitigating factors that influence how society sees a disabled person.

As part of social interactions, the body has an inherent materiality. The perciever asseses at first glance what societal "worth" the other has. This judgement is a subconcious process ruled by socieal bias. People's external body is always visable to others. This societal exposure has a big impact on how people interact with one another and is crucial in determining how people and bodies "fit" into normative frameworks of knowledge. If a person does not meet the others expectation of normality they are at risk of being subject to stigmatization founded on otherness. as Because various impairments have distinct effects on how the body looks, there are varying degrees of bias associated with them. The more visble or "noticable" a disability is, the more societally distant they are categorized.

Research on the Paralympics has shown how media coverage frequently focuses on the male, muscular paraplegic men (typically an acquired disability) competing in sports like basketball, as opposed to the male adult with cerebral palsy (a congenital disability), who competes in the shot put and has difficulty speaking "normally," has muscle contractions and spasms they are unable to control (Hardin 2008). The public's preference to watch men's basketball as opposed to shot put reveals the formation of bias hierarchies within disability. People preferred to watch basketball because they believed the more conventionally attractive paraplegic man looked more ‘normal’ as compared to the more visually disfigured man with CP.Societies prizing of particular social stereotypes of health and beauty for men to be strong and protective reinforces the ableist stigmatization that one can't be those things whilst also being disabled.

The table below of a study done by Nario-Redmond shows the 10 most frequently gendered cultural stereotypes for disabled men and women as compared to those for non-disabled men and women. The top three stereotypes associated with the disabled body (for both men and women) describe them as a dependent, incompetent, and asexual beings. Disabled men and women are also seen as weak, passive, and heroic. The fact that participants in this study had selected 7/10 of the same characteristics to describe both groups with open-ended descriptions proves evidence that the same collective bias exists surrounding disability regardless of gender or assumed type of disability. In essence, there exists a collective consciousness of ableism that functions within subconscious society. People of average functioning have biases that maintain overgeneralized beliefs, especially when upheld by the media. This study reveals that the normal vs abnormal binary of cross-impairment stereotypes is upheld by members of able-bodied society. The use of the same three descriptors (dependent, incompetent, and asexual) shows that society perceives and judges disability even before gender. The use of the same words for both sexes of PWD and highly varying ones for AB people creates an unchangeable and generalized social role of otherness and burdenhood for PWD. The AB population stereotypes disabled people as incompetent and dependent to see themselves as strong and helpful, to create an opposition to the binary where their experience is still more positive. Thereby, the stereotypes of PWD perpetuated by society create a negatively connotated distinction of what it means to be abnormal so that the normal social role can be glorified.

Kathleen Bogart conducted a study that presented different types of disabilities followed by a social distance scale, This scale asked participants how comfortable they would be, marrying a person with that disability, becoming friends with a person with that condition, working next to a person with that condition, and having the person with that condition be your neighbor at a scale of 1-8 (with 8 being extremely comfortable and 1 extremely uncomfortable). The conditions that the participants were presented with could have a congenital or acquired onset.

The language used to describe each condition was as follows:

"blind, deaf, facial disfigurement, intellectual disability (low IQ), mental illness, missing an arm/arm amputation, paraplegia" (Bogart).

The language used ensured that the differences between each onset were as specific as possible while still maintaining anonymity. The results shown in the table to the right reveal that congenital disabilities were more stigmatized than acquired disabilities. Furthermore, disability kind showed significant variation in the judgment of some types of disabilities over others. Participants more heavily stigmatized people with mental illness, intellectual disabilities, facial disfigurement, and paraplegia. Blindness, deafness, and arm amputations were the least stigmatized. Overall this study promotes the assumption that for each type of disability, acquired disability was rated more positively than the congenital making of the disability. Individuals who are born into a stigmatized social category face far greater stigma compared to those who join that category later in life. Meaning that they feel the effects of essentialism more than acquired people.

A lot of the discussion thus far has been focused on the discourse of ‘normal vs other’ from a societal standpoint. Yet when discussing congenital disability, it is key to look at how their individual understanding of their experience as their normality contradicts the stigma society holds. A person born disabled has only ever experienced life as a disabled person, meaning they understand this role as the normal human experience. This notion reflects the idea of essentialism. Essentialism is often used to describe categories of beliefs that have real and natural underlying differences and clear boundaries. Congenital disability is a social category that garners a lot of essentialism beliefs as people are likely to posit that these disabilities are genetically determined, fundamentally determined, immutable (permanent), and influences the person’s traits. It is thought that people with congenital disabilities are "stuck" inside this social categorization. The stigma that essential thoughts produce about disability affects all people with disabilities (majority congenital)  but varies in accordance with the onset of the disability (congenital vs acquired). 

Because people with congenital disabilities are born into a disabled social role immediately, they often experience more extreme stereotypes. Being disabled from birth creates a narrative of guilt, pity, and otherness due to lifelong societal associations with infantilization. Below I will discuss the popular assumptions about people who are disabled and have always been disabled.

People with disabilities deserve pity: Many people view disability as a personal misfortune, hence disabled individuals should be pitied. People with disabilities are frequently seen as sad characters that society should sympathize with. They contend that having a disability is an ongoing burden and that those who are able-bodied are constantly obligated to assist disabled people since their lives are filled with grief and pain. The most ideal recipients of charity are people with disabilities and their families, whose purpose it is to encourage others to be kind and arouse sentiments of kindness and generosity in others. Contrary to popular belief, a "handicap" does not necessarily result in a lower quality of life; rather, the actual tragedy is frequently brought on by society's unfavorable views and the lack of accessibility within the community. People with disability cannot lead a productive and fulfilling life: This prejudice holds that persons with disabilities (PWD) cannot have a high "quality of life". Extreme gender stereotypes and notions of asexuality encourage the notion that those who are disabled won't be able to start a family, land a solid career, or shoulder responsibility. The individual's disability continues to get constant attention at the expense of their skills. Just like able-bodied people, people with disabilities are capable of actively engaging in communal life. The difficult part is to get society to remove the obstacles in the way.

People with disabilities are brave, courageous, heroic, and inspirational for living with their disability: PWDs are frequently presented as superhumans who are brave and overcome difficulties. According to this myth, PWDs are under enormous pressure to be upbeat, accommodating, and ready to "make the best of their circumstance". Because of their limitation, people with disabilities have the opportunity to demonstrate qualities like courage and patience that they did not realize they possessed. This stereotype disregards the possibility of complex emotions and views persons with disabilities as unique rather than as part of the general population who all feel emotions the same.

Disability is a continuous burden: Because of the stereotypes associated with historical institutionalization society is still under the illusion that living with a disabled person means living a life of constant sadness, and those who are able-bodied are constantly required to assist them. People in capitalistic countries consider self-efficiency and the ability to take care of one's needs to be essential for an average induvidual. However, independence can take many forms and any and all accommodations that could be made possible should be in order to include all person's abilities.

(Nadio-Redman) and (Chan)

According to Thomas, a disabled identity is one that is generated by normative self-concepts and a self-redefinition based on disability’s connotation by society. Internal perceptions of misfortune and societal norms of disabled people as outcasts along with newly developed negative beliefs about bodily function work together to shape one's body image as a newly disabled person. In essence, body image may be seen as a synthesis of personal perspectives on body capabilities and environmental factors. There is a dissonance between one's idea of what the ideal body looks like and what in accordance with societal values they know their body to look like. From the perspective of individuals with acquired disabilities, changes to body function influence how these individuals perceive themselves and their new bodies. When a disparity separates a person's projected "visual" social identity from their "real" self-identity stigmatizations become detrimental to self-image. It is necessary to review Ann Sheldon's study on males who had suffered spinal cord injuries to better understand the connection between body image and self.

The experiences of body image and self-concept provided by participating males with SCI revealed three themes surrounding the effects of societal stereotypes. These themes are a reflection of the men's altered self-concept and altered body image following SCI. The themes are as follows: Changes in one's self and physical appearance, interactions with the general public, and decisions and actions people take. Sustaining such a drastic change in the body is reflected in the individual emotionally as well as physically. Society has pushed the narrative for ages that a complete human is a whole one. Therefore it is human nature to consider the loss of function a negative thing at first, something to mourn. However, the negative connotation of becoming disabled elicits an outside reaction to portray a sense of misfortune for the individual. A newly disabled person's exit from the AB experience is dictated by words of apology, mourning, and caretaking from everyone they know and love, even medical professionals. No wonder those individuals generate a negative relationship with their new body and feel as though they are incomplete now... they are made to feel that way by others considering them somehow more disadvantaged. After an adjustment period to their new reality, a person with a newly acquired disability may be pushed to accept the circumstances and move on. They are regarded as survivors, the lucky ones, and therefore have to inspire the population that their lives could be worse.

Interactions with the general public, such as overt glances and stares reinforce that a social role alteration that has taken place. They are no longer considered the same person as before the accident, others regard them as just a disabled person. Their individual experience is wholly ignored with passing glances and teary eyes. People with acquired disabilities know how they perceived disabled people before the accident and now look at their own bodies from the same lens (initially). This creates an internal dialogue separation of the public lens and self-knowledge. A dissonance in what they imagine themselves to be perceived by others as is different than the person they know themselves internally to be.

Additionally, this study revealed that body image could also change due to insecurities regarding fitting into gender stereotypes after a disability. Threats to the participants' perception of hetero-normal masculinity were posed by their challenges with their transformed bodies and the altered functions, activities, and redefinition into a less valued social role. Having to be taken care of, instead of being the caretaker reinforces the idea that they are less of a man. This negative self-view pushed by binary and traditional gender norms can cause feelings of unworthiness, unattractiveness, childishness, or asexuality to those who don't fit under the mold. A constant remains that the men (in this study) still adhere to and strive for values of hetero-normative masculinity; capability, and strength.

In society:

From a sociological standpoint, individuals who are experiencing disability for the first time must also deal with the role of family, cross-cultural issues and adjustments, the repercussions of negative attitudes toward people with disabilities as a group, and the roles of professionals who help them with adjusting. The majority of people who are physically fit believe that having a disability will be far more difficult and unfavorable than it actually is.

Societally, one considers disabled people unfortunate when they perceive that person as suffering under their condition (Dembo et al.). Society not only expects someone to suffer under these conditions but believes that there is no other way to cope with this sense of loss- by societal considerations a healthy body is a fortunate one. The judgment of misfortune by able-bodied people is an expression of personal and social values that the judge internalizes. In Western culture, the onset of a disability after an able-bodied experience- such as a loss of a limb, facial burn, or onset of blindness is not a neutral variation like dying one's hair a different color. These versions of the words "body whole," "body competent," and "body lovely" are really regarded as disfigurements and disabilities. People who are competent to judge them consider them to be disasters or value losses. The individual who experiences a misfortune (such as an acquired impairment) is expected by others to suffer under this new social role and lament the loss of bodily function since tragedy is thus seen to be the taking away of something precious.

Individually:

 Disability does not alter a person in any manner that matters. Disability, however, challenges the beliefs a person has about who they are. People bring their unique combination of views, attitudes, skills, charisma, anxieties, and social abilities to their impairment. A person's capacity to cope with a disability is influenced by who they are. A person with a disability is still the same person they were before developing their particular kind of impairment. It's crucial to avoid treating people differently just because they suffer from a particular impairment. One shouldn't anticipate them to be any stronger or weaker, and shouldn't be astonished if they have discovered previously hidden talents inside themselves. 

Four fundamental steps comprise the process of adapting to a new kind of impairment. In the Kubler-Ross stages of grief, one will go through shock, denial, anger/depression, and adjustment/acceptance are some of these stages. Each individual moves through these phases at their own rate and can jump back to stages or skip some entirely.

• Shock is characterized by a temporary or prolonged condition of emotional and physical numbness. 
• Denial is a protective strategy that enables the consequences of the new impairment the person has encountered to be progressively presented or ignored altogether in an unwell mind state. Denial can last anywhere from three weeks to two months. Denial only becomes a problem when it interferes with a person's daily activities, medical treatments, or efforts at rehabilitation. 
•  Anger and despair are responses to loss as well as a person's altered social standing and treatment. During this stage, the person may go through a range of emotions as they mourn the changes to their body image, function, loss of future expectations, or previous satisfaction based on any lost function.
•  Adjustment/Acceptance this stage allows for the renunciation of any unrealistic expectations as well as the successful adaptation of new roles based on realistic potentials and limitations, it does not necessarily imply that the person is happy about the disability they are currently experiencing. Interactions with others who have various impairments might help the individual feel more at ease with themselves. 

Mike the first man's story included below is a part of Sheldon's study on body image and self concept in men with SCIs. Steve and Katie are participants from an open-answer qualitative study on the experiences of Disabled people. This study was carried out by Taleporos in Melbourne. These participants were between the ages of 22-5o years old and all had a physical disability. The researchers interviewed three women with congenital disabilities, one woman with an acquired disability and three men with acquired SCIs. According to the study, individuals' psychological experiences, sentiments, and attitudes regarding their own bodies were negatively impacted by physical disability. A common theme amongst the respondents was that a negative  social environment  contributed if not created their body image issues. In regards to acquired disabilities there was evidence to support the idea that people eventually become used to their altered bodies after a period of grief and learn to adjust to their new experience and form a positive relationship with their bodies. 

Mike of Toronto, Canada: Mike frequently compared himself to others who were able-bodied and to his own pre-SCI self because he did not want to appear to have a Disability. He described how having a disability changed how he now views himself and how it had grown challenging to see his own self-qualities amongst his body's new restrictions. The men in the study all talked about how this fight persists years after one has been reintegrated into society. (Sheldon)

Marseilles, France:

Steve of Melbourne, Australia: Steves's quotation explains how his negative body image immediately after the accident was a result of a slow adjustment process to his new reality. He goes on to say in the paper that, "I think my bad body image was a symptom of... denying my disability, trying to be someone I wasn't. I was trying to pretend I was a non-disabled guy" (G. Teleporos). Steve took a period of 25 years to overcome his negative perceptions of his body as he had to take time to process and accept his physical disability. His ability to rectify his relationship with his body was aided by his identification as an athlete. By continuing to follow the male stereotype of sport participation he can connect to his social role in a more literal sense to feel secure in his identity and replicate the societal expectation that men are strong and capable. (Taleporos)

Katie of Melbourne, Australia: Katie thinks that the criticism she receives from her environment is the cause of her bad thoughts about her physique. She recounts in her quotation how she came to the conclusion that she is not attractive as a result of being rejected by possible sexual partners. The societal ideal of feminine beauty is created by society, and individuals who don't comply with it become so upset by not living up to expectations that they start to accept what society tells them. Katie has internalized the negative sentiments to the point that she feels different from other people. (Taleporos)

By learning to experience the world through a disabled body from birth, many disabled people learn to adapt and work outside the realm of norms. Yet, people who experience disability later in life have to redefine their social role and experience a loss of bodily capacity. These two different situations lead both “types” of disabled people to develop completely different identities and beliefs about self. Through the lens of the psychosocial model of disability, it is clear that the social construct of disability is created by abled-bodied people in order to categorize others by what is normal and abnormal. These notions are formed through the oppressive stigmatization of people who are different. However, the human experience is a variable one, and many factors such as the onset of disability and gender influence what stereotypes are drawn to what degree. People with congenital disabilities have more traits that are essentially defining to society and therefore the public thinks of people in this group to be pitied, immovable (can not be made able-bodied), separated more from their gender role, more likely to be socially distanced from, a burden on others, and inspirational for existing outside societal norms. Comparatively, people with acquired disabilities still face much of the same stigmatization around functioning (ability), social distancing, helplessness, and unfortunate (unlucky) but to a lesser degree. This observation is most likely due to their previous existence as able-bodied and so people place less forceful social narratives onto them. Additionally, people who became disabled have to navigate the process of acceptance and the alteration to their social connotation. This process increases dissonance between identity and body which leads to an increase in self-esteem issues as people have to relearn how to live life in a new body with different capabilities. Many people take time to adjust to this new role but can become more at peace with themselves if they also adhere to their gender stereotypes. This reveals that people can have differing and co-occurring social roles, and by following the norms of some of these standards can aid people's adjustment to more adverse typifications.

• Dembo, Tamara, Gloria L. Leviton, and Beatrice A. Wright. “Adjustment to Misfortune: A Problem of Social-Psychological Rehabilitation.” Rehabilitation psychology 22.1 (1975): i–100. Web.
• Chan, Fong., Elizabeth. Da Silva Cardoso, and Julie. Chronister. Understanding Psychosocial Adjustment to Chronic Illness and Disability : A Handbook for Evidence-Based Practitioners in Rehabilitation. 1st ed. New York: Springer Publishing Company, Incorporated, 2009. Print.
• Bogart, Kathleen R., Nicole M. Rosa, and Michael L. Slepian. “Born That Way or Became That Way: Stigma Toward Congenital Versus Acquired Disability.” Group processes & intergroup relations 22.4 (2019): 594–612. Web.
• Nario-Redmond, Michelle R. (Michelle Reyna). Ableism : The Causes and Consequence of Disability Prejudice. Hoboken, NJ: Wiley Blackwell, 2020. Print.
• Popowich Sheldon, Ann, et al. “Exploring Body Image and Self-Concept of Men With Acquired Spinal Cord Injuries.” American Journal of Men’s Health, vol. 5, no. 4, 2011, pp. 306–17, https://doi.org/10.1177/1557988310375714.
•   Enea-Drapeau, Claire, et al. “Tracking Subtle Stereotypes of Children with Trisomy 21: From Facial-Feature-Based to Implicit Stereotyping.” PLoS ONE, vol. 7, no. 4, 2012, pp. e34369–e34369, https://doi.org/10.1371/journal.pone.0034369.
• “Libguides: Disability Theory: Social/Independent Living Model.” Social/Independent Living Model - Disability Theory - University of Illinois at Urbana-Champaign, guides.library.illinois.edu/c.php?g=549817&p=3774566%C2%A0%C2%A0. 
• Becker, Howard S. "Outsiders: Studies in Sociology of Deviance (New edition)." (1997).
• Goffman, Erving. Frame analysis: An essay on the organization of experience. Harvard University Press, 1974.
• Hardin, Marie, and Brent Hardin. "Elite wheelchair athletes relate to sport media." The Paralympic Games: empowerment or side show (2008): 25-33.
• Schubert, Thomas W., and Sabine Otten. “Overlap of Self, Ingroup, and Outgroup: Pictorial Measures of Self-Categorization.” Self and Identity, vol. 1, no. 4, 2002, pp. 353–76,  https://doi.org/10.1080/152988602760328012 .
• Howes, Hannah, et al. “Women’s Experience of Brain Injury: An Interpretative Phenomenological Analysis.” Psychology & Health, vol. 20, no. 1, 2005, pp. 129–42, https://doi.org/10.1080/0887044042000272903.
• Kübler-Ross, Elisabeth., and David Kessler. On Grief and Grieving : Finding the Meaning of Grief through the Five Stages of Loss. Scribner, 2005.
• Taleporos, George, and Marita P McCabe. “Body image and physical disability--personal perspectives.” Social science & medicine (1982) vol. 54,6 (2002): 971-80. doi:10.1016/s0277-9536(01)00069-7