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Disabled by Society: A Discussion and In-Depth Study of Cultural Identity of the Intellectually Disabled

Updated on December 29, 2015

Introduction

This hub will begin with a discussion and brief history of the treatment of the intellectually disabled since this is a highly contributive factor in their cultural identity. However, the discussion of cultural development and identity among the intellectually disabled population is complicated by the limiting factor of societal approaches to caring for this sub-group. Nevertheless, the research will present that these individuals, although diagnosed with a highly inhibitory disability, possess a culture and can be shown to have developed this culture over time. More specifically, the culture of this group will be discussed in the context of the difficulty the group experiences in its attempt to integrate with the larger culture due to social stigma and discrimination. Furthermore, the fact that culture of these individuals is dependent on the cultural features of their families and caretakers is discussed as a protective function due to societal response. Finally, the hub will discuss the advent of acceptance and self-advocacy and systemic reform as an evolution of a fuller cultural identity for this group. Due to the available body of research, the paper will focus on intellectually disabled individuals in Western culture primarily and will truncate history to be concise.

Treatment of the intellectually disabled was exploitative before their humanity was considered.
Treatment of the intellectually disabled was exploitative before their humanity was considered. | Source
Conditions improved over the next few centuries, but was still not respectful to the humanity of the intellectually disabled.
Conditions improved over the next few centuries, but was still not respectful to the humanity of the intellectually disabled. | Source

Historical Treatment of Individuals with Intellectual Disabilities

Ancient times were marked by the denigration and imprisonment of those with intellectual disabilities, writing them off as useless to society (Chesire, 2014). Through philanthropic work, there was drastic reform. However, by the 19th century there was still a pervasively negative attitude toward those with intellectual disabilities. In fact, “idiots”, as they were termed, were placed in asylums (Lachapelle, 2007). There were concerted efforts to educate, reform, and improve the mental and moral functioning of these individuals, but it was not for the well-being of the incarcerated. It was an exploitation of the fact that these individuals were a contained population powerless to resist the social experimentation of teaching methodology to which they were subjected (Lachapelle, 2007). There were the faint voices, however, of those who desired to see integration into society for these incarcerated individuals. They argued that experimentation was only valid if the end result was the allowance of “idiots” to join society in a meaningful manner. Though there was a humanitarian effort launched by some, the integrative effect of programmatic asylums never came to fruition (Lachapelle, 2007).

Furthermore, any progress that began in the era of asylum teaching was destroyed at the turn of the 20th century. The early 1900s ushered in the era of eugenics. With the ideology that eugenics engendered, it seemed not only proper but imperative to protect the purity of bloodlines in the West (Carey, 2009). The number of institutions for the “feebleminded” increased dramatically in America. As the popularity of this ideology grew, institutions spread nationwide. Local municipalities passed legislation that permitted the institutions to forcibly sterilize those in their care to prevent “pollution of the race”. The “feeblemindedness” was seen as a generational moral failure, thus justifying the drastic approach. It was the opinion of the propagators of eugenics that the disability that these individuals were being diagnosed with was resultant of relationships which occurred out of wedlock or between individuals of different races. Both of those scenarios, per the contemporary social mores, dictated a staunch and prompt reaction to slow the decline of the nation. It was reasoned that if the “feebleminded” were allowed to exist unchecked, crime and poverty would grow at the corrupt seed of the disabled worked its way into the generations of America, marring the stock that bred good citizens (Carey, 2009). The reality of the movement is that it was a push to systematically deny right to people on the basis of a congenital condition which affect their neurological function. However, the more insidious intentions that were underlying the processes of institutionalization and forced sterilization were the realization of a plan to intentionally deny individuals with intellectual disabilities the right to access to culture. Not only was the denial of access to the culture of the larger world a means of control. It was an attempt to elevate the status of those who supported the cause (Carey, 2009)

Mid-20th century, however, was a time of significant reform. Although intellectual disability was viewed as a condition that precluded individuals from involvement with the outside world, there was a shift in approach from simply containing the “mongoloids” to approaching the intellectually disabled therapeutically. Thus, facilities designed for their containment were restructured to include educational services (Anderson, 2014). Nevertheless, it was still common for doctors to advise families against keeping their intellectually disabled children at home since it was thought that institutionalization was the most effective course of action. Yet, that notion was challenged moving into the sixties, and physicians revisited the merit of institutionalizing children based solely on intellectual disability. It was suggested that trial periods be allowed in which parents could allow the children with disabilities to stay at home and function according to guidelines established by doctors. It was a move toward the affordance of rights and culture to individuals with intellectual disabilities (Anderson, 2014).

The demeaning sense of being ignored diminishes quality of life.
The demeaning sense of being ignored diminishes quality of life. | Source

Cultural Development

In spite of reform and even in modernity, there is still stigma attached to intellectual disability due to societal misunderstanding of the underlying causes and subsequent effects of intellectual disability (Ali, Hassiotis, Strydom, & King, 2012). Of particular concern is when a family is from a culture that emphasizes saving face, their children with intellectual disabilities are often further disadvantaged. This is because research finds that when a culturally negative attitude toward the individual’s own role in the causality of intellectual disability exists, it is common to hide the individual by completely secluding them from the outside culture (Mak & Cheung, 2008). It seems that stigma and outright discrimination has driven the population of intellectually disabled individuals inward toward their families. Consequently, those individuals are secluded from the larger cultural group in which they exist and experience other discriminatory treatment based on race, religion or creed in an exacerbated fashion (Abraham, Gregory, Wolf, & Pemberton, 2002).

Another unfortunate cultural consequence for this population is that their cultural experiences are limited by their reluctance to go beyond their familial support and their difficulty obtaining adequate support to be successful in pursuing extra-curricular activities which serve to enhance culture or that are an inherent component of culture (Abraham, et al., 2002). Therefore, care-givers and parents are tasked with providing cultural stimulation while trying to balance the individual’s need for independence and the tendency to be over-protective due to stigma and discrimination (Power, 2008). As a result of the inhibitory factors, the cultural experience is overall diminished for persons with intellectual disabilities (Abraham, et al. 2002) and dependent almost entirely upon the exposure to cultural elements through parents, siblings and other care givers. Unfortunately, research has shown that in areas where discrimination is widespread, caretakers are reluctant to expose the intellectually disabled to the disapproving public. In fact, experiences and reports of cruelty toward this population leave some caretakers with no apparent recourse but to further isolate those in their care (Mirza, Tareen, Davidson, & Rahman, 2009). Of course, this further inhibits the cultural emersion of the individual with a disability.

As expected, the lack of cultural exposure and subsequent lack of social support which derives from cultural involvement generates a considerable amount of stress in individuals with intellectual disabilities. Importantly, this population is much more susceptible to the negative effects of this stress (Lunsky, 2008). Fortunately, however, there is a push for the systemic development of skills in individuals belonging to this population that will allow them to advocate for themselves, thereby solidifying a sense of culture beyond their family and caretaker created environments ((Trajkovski, 2015). The formation of culture within this movement begins with the development of self-identity, and it is honed by nurturing skills that ensure the highest possible level of independence to allow for the exploration of society experiences (Trajkovski, 2015).

As an extension of attempts to care for and protect individuals with intellectual disabilities, failure to consider the viewpoint of the individual and limit their exploration of self and others is common (Lunsky, 2008). Nevertheless, research shows that as individuals in this population who are exposed to self-advocacy and made aware of advocacy groups grow an awareness of the systemic injustice of being disallowed cultural inclusion (Ryan & Griffiths, 2015). Indeed, the group begins to ask for permission to succeed or fail based on their own merit (Ryan & Griffiths, 2015) and to be granted the right to enter relationships that afford them the same pleasure their caregivers derive from caring for them (Mirza, et al., 2009).

Men with intellectual disabilities compete in a judo competition. Competition boosts self-esteem.
Men with intellectual disabilities compete in a judo competition. Competition boosts self-esteem. | Source
Courting behavior is important to development.
Courting behavior is important to development. | Source
Healthy relationship come from the formation of respectful communities.
Healthy relationship come from the formation of respectful communities. | Source

Current State of Cultural Identity

Progress is noted. Unfortunately, however, the current reality of cultural identity for the intellectually disabled is punctuated by frustration. Those with intellectual disabilities are much more likely than the general population to be assaulted, have items stolen and incur personal injury due to abuse and neglect (Chadwick, et al., 2013). A stunted cultural experience begins in childhood when many intellectually disabled children are abused by their caregivers. The compounded detriment of a blunt sense of awareness due to neurological deficits and weakened familial (maternal/paternal) bonds interrupt the normal development of sociality in the intellectually disabled child. This begins a pattern of seclusion and maladaptive, inhibitory behavior that is likely to continue through adulthood (Howe, 2006). The resultant behavioral patterns that establish due to the trauma reduce the educational and career prospects for these individuals by reducing the likelihood that prosocial and interpersonal skills are adequate to navigate the complex and interactive worlds of school and employment (Howe, 2006). Research has frequently highlighted the role that parental mistreatment has on the social functioning of children and framed that risk in the context of the fact that parents are the primary source of social input for intellectually disabled dependents (Mirza, et al., 2009). Furthermore, the difficulty in finding social input and stimulation outside of immediate familial environments is recognized as a significant challenge to this population (Abraham et al., 2002). It is therefore a function of the family to input culturally relevant stimuli to ensure development to an optimal degree (Abraham et al., 2002). When abuse and mistreatment is part of the parent, child dyad, the child’s societal failure is statistically probable (Howe, 2006).

When given a voice, however, individuals with intellectual disabilities make clear what they want their culture to look like moving forward. They want to be heard without being made to feel like children their whole life (Mirza, et al., 2009). Unfortunately, research confirms that societal perception is that these individuals are perennially children in adult bodies (Azzopardi-Lane & Callus, 2014). One of the ways to ensure that their culture is developed by those belonging to the group is to allow the freedom to develop meaningful relationships- a critical aspect of cultural and personal development. Indeed, many of the concerns for allowing relationships, whether sexual or not, hinge on the idea that individuals with intellectual disabilities do not understand the ramifications or the nuances of a relationship (Azzopardi-Lane & Callus, 2014). However, members of this group actually demonstrate an understanding of many of the social niceties of relationships, and, possibly more surprising, an understanding of the fact that many assume that relationships are not appropriate in this population (Azzopardi-Lane & Callus, 2014).

Additionally, members of this group want to be included in the onward flow of society. As cultural interaction grows inextricably linked with an online presence, it is important to allow persons with intellectual disabilities to engage in this new form of sociality (Chadwick, Wesson, & Fullwood, 2013). Furthermore, with basic internet training, use of the web could open up opportunities for friendships, education and careers (Chadwick et al., 2013). Research demonstrates the desire for relationships (Azzopardi-Lane & Callous, 2014) and for social inclusion (Abraham et al., 2002). And participation in programs to introduce individuals with intellectual disabilities is indicative of interest among the group (Chadwick, et al., 2013).

Finally, to secure a developed and societally responsive cultural identity, the group must be allowed to participate in the elements of their care that affect their independence (Lunsky, 2008). To illustrate, the intellectually disabled are significantly more likely to be treated with psychotropic drugs, often to the detriment of their feelings of wellness. However, side effects are often unaddressed (Lalor & Poulson, 2013). Intellectually disabled individuals also report being frequently ignored and or interrupted when trying to offer input of any kind to the conversation of caregivers (Lunsky, 2008).

References

Abraham, C., Gregory, N., Wolf, L., Pemberton, R. (2002). Self-esteem, stigma and community participation amongst people with learning difficulties living in the community. Journal of Community and Applied Social Psychology, 12 (6), 430–443.

Ali, A., Hassiotis, A., Strydom, A., & King, M. (2012). Self stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities,33 (6), 2122-2140.

Anderson, S. (2014). 50 Years Ago in The Journal of Pediatrics: An Analysis of Reasons for Institutionalizing Children with Mongolism. The Journal of Pediatrics, 164(2), 338-338. doi:10.1016/j.jpeds.2013.08.036

Azzopardi-Lane, C., Callus, A.M. (2014). Constructing sexual identities: people with intellectual disabilities talking about sexuality. British Journal of Learning Disabilities, 43 (1), 32-37.

Carey, A. C. (2009). On the Margins of Citizenship : Intellectual Disability and Civil Rights in Twentieth-century America. Philadelphia: Temple University Press.

Chadwick, D., Wesson, C., & Fullwood, C. (2013). Internet access by people with intellectual disabilities: Inequalities and opportunities. Future Internet, 5(3), 376-397. doi:http://dx.doi.org/10.3390/fi5030376

Cheshire, W. P. (2014). Dignifying intellectual disability. Ethics & Medicine: an international journal of bioethics, 30(2), 71+. Retrieved from http://go.galegroup.com.ezproxy.liberty.edu:2048/ps/i.do?id=GALE%7CA375951656&v=2.1&u=vic_liberty&it=r&p=AONE&sw=w&asid=99a1d9cabeac6ea580376402a8d324e0

Howe, D. (2006). Disabled children, maltreatment and attachment. The British Journal of Social Work. 36 (5), 743-760. Retrieved from: http://www.jstor.org/stable/23721254.

Lachapelle, S. (2007). Educating idiots: Utopian ideals and practical organization regarding idiocy inside nineteenth-century french asylums. Science in Context, 20(4), 627-648. Retrieved from http://search.proquest.com/docview/205064899?accountid=12085

Lalor, J., & Poulson, L. (2013). Psychotropic medications and adults with intellectual disabilities: Care staff perspectives. Advances in Mental Health and Intellectual Disabilities, 7(6), 333-345. Retrieved from http://search.proquest.com/docview/1447820137?accountid=12085

Lunsky, Y. (2008). The impact of stress and social support on the mental health of individuals with intellectual disabilities. Salud Pública De México, 50 Suppl 2s151-s153.

Mak, W.W.S., Cheung, R.Y.M., (2008). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disability, 21 (6) 532–545.

Mirza, I., Tareen, A., Davidson, L. L., & Rahman, A. (2009). Community management of intellectual disabilities in Pakistan: a mixed methods study. Journal Of Intellectual Disability Research: JIDR, 53(6), 559-570.

Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Ethics and the ethnography of medical research in Africa, 67 (5), 834-843.

Ryan, T. G., & Griffiths, S. (2015). Self-advocacy and its impacts for adults with developmental disabilities. Australian Journal of Adult Learning, 55(1), 31-53. Retrieved from http://search.proquest.com/docview/1674728428?accountid=12085

Trajkovski, S. (2015). Ability of self-advocacy of people with intellectual disabilities. The Journal of Special Education and Rehabilitation, 16(1), 134-136. Retrieved from http://search.proquest.com/docview/1673951600?accountid=12085

Yong, A. (2007). Theology and Down Syndrome : Reimagining Disability in Late Modernity. Waco, Tex: Baylor University Press.

Should cultural identity be considered when evaluating treatment of the intellectually disabled?

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    • Andy Lee Lawson profile image
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      Andrew Lawson 2 years ago from Knoxville, TN

      That's unbelievable! I work with individuals with intellectual and developmental disabilities as a behavior specialist. Yeah, I don't think Trump has any policies for the advancement of research in neurological atypicality or treatment for individuals with disabilities.

    • Besarien profile image

      Besarien 2 years ago

      It is so frightening where mental health care was at, within my lifetime. I have a gay friend who was institutionalized for being gay until he was 18. Before that he was drugged up, given electro-shock, and was raped repeatedly by an orderly. One of the Kennedy sisters was lobotomized to rid her of her sex drive and make her docile or something. One of my own cousins born with Down Syndrome was kept a prisoner. She never went to school, never had any training except whatever her parents taught her. Her parents were ashamed of her. The rest of the family went along. They told me that was just how things were done back then. She died when I was about seven or eight. I had never met her, and never learned about her existence, until I was about thirty. Even then I heard it as a whisper. Now more often it seems like we neglect our duties to people rather than outright mistreating them, though I have no doubt that happens too. I don't know how any of this changes until we take responsibility for taking care of people who need help. I doubt that Donald Trump is going to fix this. Happy New Year! A very serious, very well-written hub that will hopefully raise awareness.

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