*** Originally Published on Engaged Sociology by IUP Department of Sociology***
Defining Intellectual Disability:
Intellectual Disability (ID) is a new diagnostic term that is being used in the DSM-V, to replace the older terminology of Mental Retardation (MR). According to The American Association of Intellectual and Developmental Disabilities (AAIDD), Intellectual Disability is defined as “a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability is said to originate before the age of 18” [[i]]. To understand what this definition is saying we also need to understand what intellectual functioning and adaptive behaviors are. Intellectual functioning is also referred to as intelligence and specifically talks about and individual’s general mental capacity which is measured by a standardized IQ exams. A note here would be that IQ exams are not always entirely accurate, so it is important to pay attention to the other diagnostic criteria as well to avoid misdiagnosis. Individuals with ID usually fall two standard deviations below the mean leaving them with an IQ score of 70-75. Adaptive behaviors, on the other hand, are skills that people use to complete tasks in their daily lives that usually fall into three categories: conceptual skills, social skills, and practical skills. It is important to know that intellectual disabilities exist on a scale that ranges from moderate to severe and that these individuals have the ability to be autonomous and live happy and fulfilling lives. To further break down what the term means, and to discover the characteristics see the video below
History of Intellectual Disability (ID):
The History of individuals with Intellectual Disability like the history of other individuals with disabilities in society has pieces of its past that is dark. It is assumed that Intellectual Disability has existed as long as man has existed but the earliest accounts that are recorded is in Thebes, Egypt [[ii]]. Cross-Culturally, individuals with intellectual disability during this time faced many different realities. Some cultures valued and honored their children regardless of disability status, such as the Egyptians, who tried to cure a lot of ailments through the use of religion and medicine [ii]. However, not all children with disabilities were so lucky. In some cultures, it was believed that a child who was disabled was possessed by an evil spirit, or they were seen as a form of divine punishment for parents who angered the gods by engaging in sin, and infanticide was practiced as a result [[iii]]. There is a lot of lure that ties to religion and other cultural beliefs, which shaped the way that these individuals were perceived.
Greece and Rome were two ancient civilizations where infanticide was practiced. In Greece, specifically children were seen as the property of the Commonwealth; children were sent to elders to have their worth determined [ii]. If they were identified as an individual with a disability, particularly one with and intellectual disability, they were killed in a variety of ways which include: being thrown into a river, or just being left somewhere in the wild[ii]. In Rome, much like Greece children’s worth was determined based on disability status but it was the parents (specifically the fathers) right to reject the child at birth rather than the commonwealths, as the child was seen as the father’s property [ii]. Due to a variety of factors that were unique to Roman civilization, many children were spared death and assigned to tasks that involved physical labor. Some children who were allowed to live were sold into prostitution, trained as beggars, and sold as rowers [iii]. In addition to Greece and Rome other civilizations also practiced infanticide, in some African tribe’s individuals with disabilities were believed to be hippopotamuses and were thrown into the river [iii]. So, this dark history extends not only across time but across cultures.
As time went on medical advances continued to happen and more discoveries were being made but the negative attitudes and stigmas that were associated with the intellectually disabled populous persisted and the discrimination continued to happen. One of the more extreme viewpoints of the intellectually disabled came from Martin Luther who stated: “the feeble-minded was merely a mass of flesh, a Massa carnis, with no soul, for it is within the Devil’s Power that he corrupts people who have reason and souls when he possesses them” [ii]. You can see from the statement that religion still had a dominating hold on the beliefs and ideologies of individuals at this time
The next area of time that affected the perception of individuals with ID was the enlightenment. During this time people were starting to move away from the supernatural explanations that were offered through religion, and more towards science and contributions from the medical field. Similar to other time periods there were more medical breakthroughs but the discrimination continued in the form of segregation through institutionalization and Eugenics.
Institutionalization of Individuals with ID:
An important name in the conversation of institutionalization of the Intellectually Disabled is Johan Guggenbühl, as he is credited with creating the first institution for individuals who were considered intellectually disabled [[iv]]. The institution was a façade that made false promises of progression and rehabilitation and served as a model for other institutions to be produced, eventually thought people saw through this and a formal investigation by the government was launched. Abendberg received many negative criticisms it “was that overcrowded, understaffed, segregated facilities inevitably tend toward abuse and neglect” [iv]. Abendberg was eventually closed, and Guggenbühl was disgraced. Bringing this back to the rise of institutions in the United States, we can explore the work of Edouard Seguin. Seguin moved to the United States in 1850 and developed several institutions including The Institution for the Feeble-minded youth [ii]. Seguin’s impact was more positive as he and five others created the organization that is now known as the American Association on Mental Retardation. However, Institutions that promised education, rehabilitation, and integration were good in theory and promised many positive things but they did not deliver and hurt the individuals who were sent there. One of the strongest examples that I can provide to emphasize this point is Willowbrook which is featured in the Documentary “Unforgotten 25 years after Willowbrook” below.
The Significance of Willowbrook
Willowbrook was an institution that children were sent to when they were believed to have an intellectual disability, and other forms of developmental disabilities. Some people were even sent there by accident because they were believed to have disabilities when they didn’t, and were exposed to poor conditions. The way that people were treated in this institution put together a case that changed views on the treatment of these individuals within society. Institutions like this were created to segregate individuals with developmental disabilities from the rest of society so that they could be rehabilitated and educated. Parents sent their children there because “that was the thing to do in the 50’s if your child was disabled” they were pressured by family as well [[v]]. These institutions were live in institutions so the children left their families and lived at Willowbrook only having interactions with them during visitations. Willowbrook was overcrowded, and this environment fostered negative outcomes for the residents like facing abuse, being dehumanized, and facing serious health concerns [[vi]]. It wasn’t until a news reporter from ABC did a piece on Willowbrook that these injustices were uncovered. He was initially contacted by one of the doctors who worked at the facility, which is what prompted him to go out and do the report. This really set in place the lawsuit against the institution that eventually led to their closure in 1987. The lawsuit included the following items: confining residents for indefinite periods, failing to release residents who were eligible, Failing to conduct periodic evaluations of residents to assess progress and refine goals and programming, Failing to provide habilitation for residents, Not providing adequate educational programs, or services such as speech, occupational, or physical therapy, Overcrowding, Lack of privacy, Failure to provide protection from theft of personal property, assault, or injury, inadequate clothing, meals, and facilities, including toilet facilities, Confining residents to beds or chairs, or to solitude, Lack of compensation for work performed, Inadequate medical facilities, and Understaffing and incompetence in professional staff [vi] . All of these conditions are highlighted in the documentary above and led to the closure of the facility, and the creation and implementation of several pieces of legislation that promoted the safety and security of individuals with intellectual disabilities.
Goddard and the Eugenics Movement:
Eugenics is the next big topic that isolated individuals with intellectual disabilities and induced fear within the able bodied populous. Eugenics is defined as “the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race” [ii]. This idea was one that fell into the hands of the wrong people more than once throughout history. In terms of disability, Sir Henry Goddard decided to conduct a study where he traced the genealogy of a family who had a relative who was intellectually disabled, as a result, he claimed intellectual disabilities were hereditary [ii]. This news spread like wildfire and made the lives of individuals with intellectual disabilities really difficult. Fear of individuals with intellectual disabilities was spread all throughout society. Men and women who were institutionalized were segregated, individuals were sterilized, and there were arguments that intellectual disabilities caused by deviant behaviors [ii].According to Introducing Disability Studies, “Some 65,000 individuals were sterilized after the supreme court in Buck vs Bell ruled that sterilization of the intellectually disabled was constitutional” [iii]. Ultimately due to the work of disability activist and scholar’s laws and legislature were produced to protect the rights of individuals with intellectual disabilities.
Disability Rights Movement:
As I have emphasized throughout the course of this blog post, individuals with disabilities have had to face much adversity and they have had to fight against beliefs, stereotypes, and fears that have been a result of stigmas that developed over time. This is because throughout time individuals with disabilities have been portrayed as objects of shame, fear, pity, or ridicule [[vii]]. As a result of these prejudices children with disabilities were kept out of schools, and adults with disabilities faced discrimination in terms of employment, housing, and accommodations within the community [vii]. The disability rights movement sought to end the injustices that individuals with disabilities faced that really took off in the 1960’s. Individuals with disabilities and social activist that supported individuals with disabilities were inspired by the Civil Rights movements and adopted many of the practices that were used during that political movement [viii]. Individuals with disabilities traveled to Washington and went to sit in federal buildings, got out of their wheel chairs and climbed steps, blocked buses from moving, and marched through the streets to protest the injustices that they faced.
This resulted in a few important pieces of legislature being developed that would change the lives of individuals with disabilities: Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act of 1990.
Laws and Legislature :
Section 504 of the Rehabilitation Act of 1973 is a piece of legislation that prohibits discrimination on the basis of disability in programs run by federal agencies; programs that receive federal financial assistance; in federal employment; and in the employment practices of federal contractors. It also allowed for reasonable accommodations and modifications in the work place that would make the environment more accessible for individuals with disabilities. To learn more about disability rights and section 504 of the Rehabilitation Act of 1973 see the link below.
The Americans with Disabilities Act (ADA) of 1990 prohibits the discrimination of individuals with disabilities and guaranteed these individuals would have access to the same opportunities as everyone else. To be protected under the Americans with Disabilities Act “one must have a disability, which is defined by the ADA as a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” [[ix]]. The goal of the ADA was to provide individuals with disabilities equal opportunities, full participation, independent living, and economic self-sufficiency. To learn more about the ADA see the video below.
The last piece of legislation that I want to discuss is specifically in regards to the topic of this blog (intellectual disability) and that is Rosa’s Law. Rosa was a young girl about 9 years old at the time who was diagnosed with Downs Syndrome. Due to the negative connotations that are associated with the terminology mental retardation she with the help of her family sought to change the terminology. Rosa’s Law is more recent in our history and it is all about the language that we use. Rosa’s Law was signed in 2010 by President Barack Obama, officially changing the terminology from “mentally retarded” (MR) to “intellectual disability” (ID) [[x]]. Language is a powerful construct within our society and words can hurt people, and I believe that is what Rosa and her family were trying to shine a light on here.
Despite the efforts of Rosa and her family some people still choose to use the term “Mentally retarded” and even use “Retard” as a way to insult other individuals, which reinforces the stigmas that are associated with individuals with intellectual disabilities. This is why in recent years there has been a campaign started called “Spread the Word to End the Word”. The mission of their cause is similar to the mission of my research that promotes the inclusivity of individuals with disabilities, in that they are trying to get people to change their language to promote a more positive and accepting environment for individuals who have intellectual disabilities. The stance here is that language affects attitude and that attitude then affect people’s actions. If you are interested in learning more about the pledge to end the word and to learn more about the cause you can visit http://www.r-word.org/r-word-pledge.aspx.
As Individualized Education Plans (IEPs) and Individualized Transition Plans (ITPs) are increasingly are being implemented with a greater quality, we are seeing an increase in the number of individuals with intellectual disabilities going on to pursue further education whether it be vocational, or in a 4-year college and university. When this happens, there is an important transition that occurs in the life of that individual, they are forced to become their own advocates. The Individuals with Disabilities Education Act (IDEA) no longer covers these individuals when they enter their post-secondary placements. These individuals have rights under the Americans with Disabilities Act that allow them access to accommodations and modifications, but to get those they have to self-disclose and self-advocate. Many people choose not to do this because they are scared of the labels and stigmas that will be associated with them if they self-identify.
Labeling and Stigmatization:
One of the major theories in the sociology of deviance, labeling theory, talks about the process where people are defined by their status as deviant, and other people in society are not ascribed this deviant status, this shapes how others interact with these individuals and how these individuals interact with others [[xi]]. Members who conform to the societal norms, attach labels to other individuals and ultimately determine the distinction between deviance and non-deviance [[xii]]. This theory can be linked to our discussion of intellectual disabilities through the application of the negative feedback model shown below. At the top of the model, you have our individual with an intellectual disability, as they enter the model they are met with restriction of activities and social roles. They are seen as the other, and thus able-bodied individuals apply negative labels to them (“retard”, “dumb”, “imbecile”, etc.). These views are then reinforced by the rest of society in mass media and everyday life. These views lead the individual to have a diminished sense of self-esteem and they really begin to feel the impact of the stigma that is occurring as a result of the labeling that took place earlier in the model. The feelings that are invoked by stigma lead the individual into a state of isolation, they withdraw from society and everything around them because they are hurt by the effects of the label. This leads us to the individual lacking a sense of self-esteem, and self-confidence, that is needed to advocate for their rights under the ADA. The processes continue again and again until something is done that will break the individual out of that cycle.
One of the drawbacks to this model is that it doesn’t highlight an exit from the cycle, which can happen. This is really where the IEPs, ITPs, and mentors come into play.
Individualized Education Plan’s looks at an individual’s history with their disability and maps out accommodations and modifications that they may need in the classroom to be successful. A big part of this is setting developmentally appropriate goals that the individual has. To encourage Self-Advocacy and empowerment, the student and their views are highlighted in the meeting. The next step in the process is and Individualized Transition Plan, where individuals begin to take vocational assessments and engage in internships to figure out what they want to do post-high school. The strength of these two processes helps ease the transition into the post-secondary setting, and they empower these individuals to be autonomous. Other ways out of the negative feedback model include having a peer mentor who would be there to support the individual with the intellectual disability. Speaking as someone with quite a few disabilities myself, if you place yourself in a positive environment, and surround yourself with positive people then it will make all the difference in your ability to be confident and to self-advocate. To hear a real-life example of the effects of perceptions of disability and labeling check out “I am not my label” a TED talk by Lily Sughroue below:
Bronfenbrenner’s Ecological Model:
Another Theory I wanted to discuss the importance of Bronfenbrenner’s Ecological Model shown below. Bronfenbrenner divided an individual’s environment into five different levels which include the following: Microsystem (closest to the individual, and has direct contact), Mesosystem (interactions between different pieces of the individual’s microsystem), Exosystem (individual is not a participant but the things in this system affect them), Macrosystem (cultural environment and overarching beliefs of society) and finally the chronosystem (events that happen over time). Applying this model to individuals with intellectual disabilities you can draw some pretty important conclusions. We have seen throughout the course of the blog how things in the macro system can ripple inwards and affect the individual with the intellectual disability at the center, but it also happens in the opposite way as we have seen with Rosa’s Law, where an individual can work through the other systems and cause social change. Perceptions of individuals with intellectual disabilities lie in the macro system because they are attitudes and ideologies of the culture. These affect all the other systems and things that come out of them like creation of curricula and policy that all lie at the exosystem because they involve the individual at the center but that individual doesn’t have a role in creating them, and Classroom interactions and school all fall within the mesosystem and microsystem because they are the closest to the individual. By looking at something such as attitudes and perceptions that have an impact on the macro system we can then positively impact the other systems within society and ultimately help the individual that lies at the center of all of the systems.
Nothing about us without us:
Finally, in terms of theoretical framework, I want to discuss James Charlton’s work, “Nothing about us without us”. In this book, one of the key concepts that he covers is this idea of paternalism. Paternalism is a sociological concept that is very Marxist in nature bringing in some core parts of the conflict theory paradigm. Paternalism is a social relationship that is created around superiority and inferiority. People in the superior role take control of individuals that they deem inferior, robbing them of their culture and traditions. As Charlton puts it “Paternalism is subtle in that it cast the oppressor as benign, as protector”[[xiii]]. You see this framework modeled in the way that members of the able-bodied community interact with individuals who have a disability. Stepping away from intellectual disability for a moment and into the realm of deaf studies one example of this relationship is the argument between oralism (teaching individuals who are deaf language using verbal skills), and manualism (teaching individuals who are deaf language using American Sign Language). Instruction of individuals who were deaf and hard of hearing shifted from manualism to oralism. Faculty in the schools who were deaf and used ASL to instruct the students were fired. Children who used ASL in the schools were reprimanded as a result and forced to wear white gloves which prevented the use of ASL. They were being robbed of their culture and being forced into another one because that is what society deemed important. You could argue that the same thing happened when individuals with intellectual disabilities were institutionalized, or even when they were being forced to have sterilization procedures done.
Individuals with intellectual disabilities are only one group of individuals with disabilities that face these struggles in terms of negative perceptions and stereotypes. In reality, this issue is much more widespread across the entire population of individuals with disabilities. Disability is something that exists on a spectrum there are extremes at both ends, there are people who are very low functioning due to the limitations that their disability presents them with, but there are also very high functioning individuals that have so much potential, that often times do not meet
because people tell them they can’t. They are labeled and stigmatized. That is why the disability rights movement and research like this is so important. You had individuals with physical disabilities who are always looked down to and seen as dependents, getting out of their wheelchairs and climbing up steps with signs picketing in the nation’s capital so that people would listen to them, hear their stories, see the effects of their experiences, and ultimately change as a result. This is important to look at because these individuals are capable of doing anything that they dream they can do. However, the barriers created by negative stigmas are damaging and affect the individual’s sense of self, which can have serious implication in the academic setting. The services that can be given to these individuals are life changing sometimes and they can make all the difference, the issue is that they are not seeking the help that they need because they are scared of the stigma. To conclude, I have three goals in conducting research on disability issues in the post-secondary setting and they are: (a) Encourage inclusive practices on campus through the use of concepts of Universal Design in classroom instruction and in campus activities and functions, (b) Eliminate negative stigmas and stereotypes, in relation to disability status, that can be harmful to a student’s self-image, and (c) Remove social barriers that prevent students from identifying as an individual with a disability, so that they can receive accommodations and services, that will aid them in their pursuit of a degree from a 4 year institution.
[i] The American Association of Intellectual and Developmental Disabilities (AAIDD), http://aaidd.org/intellectual-disability/definition#.WEcSLuYrLIU
[ii] Taylor, R. L., Richards, S., & Brady, M. P. (2005). Mental retardation: Historical perspectives, current practices, and future directions. Boston: Pearson Allyn and Bacon.
[iii] Berger, R. J. (2013). Introducing disability studies. Boulder: Lynne Rienner.
[iv] The Minnesota Governor’s Council on Developmental Disabilities. (n.d.). Parallels In Time A History of Developmental Disabilities. Retrieved December 07, 2016, from https://mn.gov/mnddc/parallels/four/4b/2.html
[vii] Introduction. (2004). Retrieved December 08, 2016, from http://bancroft.berkeley.edu/collections/drilm/introduction.html
[viii] Mayerson, A. (1992). The History of the Americans with Disabilities Act. Retrieved December 08, 2016, from https://dredf.org/news/publications/the-history-of-the-ada/
[x] Rosa’s Law: Intellectual Disability Terminology Changes. (2013, May 29). Retrieved December 08, 2016, from http://www.azed.gov/finance/2013/05/29/rosas-law-intellectual-disability-terminology-changes/
[xii] Crossman, A. (2014, December 18). What Is the Labeling Theory? Retrieved April 04, 2016, from http://sociology.about.com/od/L_Index/g/Labeling-Theory.htm
[xiii] Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.