The History Of Down Syndrome Social Work Essay
This paper looks at the various theories that explain social interactions within the society, such as the gaze model. Other theories are the social model, the medical model and the stigma theory. These theories provide guidance into understanding the various interactions between the disabled and normal individuals within the community.
Another name for the Down syndrome phenomenon is trisomy 21. This condition occurs when there is an extra copy of chromosome number 21 in the body system of an individual. Shildrick (2009) denotes that this condition causes a change in the body make of a child, and this leads to facial disfigurement. This article takes a closer look at the impact of the Down syndrome phenomenon. It analyzes the issues that affect the social construction of people with disabilities, and in this case, children with the Down syndrome phenomenon.
This paper analyzes a variety of theoretical frameworks that explain the behavior of people in regard to the disabled. It synthesis these theories, into various ideologies of inclusion, and helps in answering the question on whether children whose face are disfigured due to the Down syndrome condition are included in the affairs of the society. This paper defines, and critically examines issues surrounding the social constructions of the disabled. Amongst the issues identified are, social identity, facial disfigurement, disability and the notion of the Down syndrome.
DePoy et al (2011) denotes that facial disfigurement occurs when the face of a child takes another form, which is against the normal. It changes the appearance of a person, and the condition has a direct influence on an individual’s perception in the society. Social identity refers to the attitude, or perception that a group in the society, views another person or themselves. Social identity emanates from an individual self-conception. DePoy et al further denotes that this perception of self, results to an individual placing him or herself to a specific social group (2011). John Turner and Henri Tajfel developed the theory of social identity, and they did this after studying the behavior of the society towards the disabled people (Tajfel, 1982).
The theory denotes that social identity is a process that provides guidance on how people behave, within a group or in relation to others. Frances (2004) observes that people within a social group interact by looking at their status in the society. Frances further denotes that the rich tend to interact with the rich, and the disabled tend to interact with the disabled (2004). Their condition in the society gives them the legitimacy to belong to a particular group. According to the social identity theory, the social environment forces the disabled to withdraw from the various social activities within the community (Frances, 2004).
This is because of stigma and discrimination. For instance, children with facial disfigurements will be unable to engage effectively with their peers, either in games or classes. DePoy et al (2011) observes that this is because of the various social groups formed within the society, and these children are unable to fit amongst them.
Selikowitz (1997) denotes that disability arises out of the emotional, physical or mental impairment of an individual’s body condition. Facial disfigurement amongst children with the Down syndrome phenomenon is an example of a physical disability. Selikowitz further denotes that Down syndrome is the main cause of disability amongst children (1997). Pueschel (2006) observes that during the 20th century, children with the element of the Down syndrome were housed in special institutions, and special houses. This is because of the various discriminative policies followed by the government or the society. This had an impact on their exclusion in the society. This changed in the 1960s with the emergence of the Civil rights movements, whose purpose was to advocate for the rights of children with the Down syndrome condition.
To rectify this problem in United States of America, Kathryn McGee formed the National Association of Down Syndrome (Marini et al, 2012). The main goal of the institution was to advocate for the various rights of children with the Down syndrome problem, and ensure their inclusion in the society (Marini et al, 2012). The formation of these associations is an element of the social model theory.
The theory denotes that problems that arise out of the disability of an individual are created by the society. The society is characterized by the presence of social groups, which enhance the notion of self-identity. To help disfigured children, it is essential to use social mechanisms such as peer groups, and civil associations to advocate for the rights of the disabled. The surrounding community must initiate environmental procedures that will protect children suffering from the Down syndrome condition.
This will ensure their participation in all events of their social lives, minimizing the rate of stigma and discrimination that these children suffer from. This theory makes it possible for a change in the perception of the society towards these children. These changes occur in the cultural beliefs, and ideological perceptions. Davis (2006) denotes that the theory recognizes the specific rights of disabled children, and advocates for various measures that will ensure these children are well protected, and included within the society.
Lansdown (1997) denotes that the social model theory advocates for the abolishment of negative stereotyping. It does this through lobbying and holding sensitization conferences to educate people on the various misconceptions about the disabled children. By doing this, they aim to influence their inclusion in the various social affairs of the community. However, medical model theorists argue that disability arises out of the medical malfunctioning of an individual’s body. To these theorists, the facial disfigurement of a child is a medical problem, and it requires a medical solution.
The medical theorists advocate for surgery, and psychological treatment to improve the facial conditions of these children. The theory lobby’s for a health care policy that will address issues that arise because of problems faced by children whose faces are disfigured due to the Down syndrome condition (Marinelli et al, 1991). A good example of such a policy is the American College of Obstetrician and Gynecologists guidance on the procedures of screening pregnant women. This is to identify whether the children they carry will suffer from the Down syndrome condition.
According to this model, for children with abnormal facial characteristics to participate effectively in the social environment, they must undergo surgery. This will correct their facial defects. Mojo et al, (2010) denotes that surgery plays an important role in reducing the facial features of a child with the Down syndrome condition. He further denotes that this leads to a reduction in discrimination, and social stigma because their faces are corrected to the normal (Mojo et al, 2010). The use of plastic surgery to correct the facial condition of disabled children is controversial. The European Down Syndrome society advocates against its use. According to the society, children with the Down syndrome condition must find acceptance in the society despite their abnormality. In as much as surgery is important, it is essential to enact social policies that will make these children gain acceptance in the society. This is because not every people can afford to the high costs associated with surgery.
On this note, it is a moral responsibility for the society to implement measures that will lead to the inclusion of the disabled in the society. This includes enacting policies that will ensure they get better and quality education that compare to their peers. The policies should create special sports and recreational facilities whose main objective is to enable these children to participate in the various social activities of the society.
The European Down syndrome society denotes that through surgery, the medical institutions accelerate discrimination and the stigma that these children suffer from. Bluhm et al (2009) denotes that these children will became aware of their medical problems, and this will result to their withdrawal from the community. On this note, instead of accelerating the inclusion of these people into the society, surgery has made them to suffer exclusion. Stigma is an issue that arises in this article. Stigma is a disapproval or discontentment of an individual by observing the various characteristics upon the person that makes them different from other members of the society. Stigma emanates from the opinions of other people towards people with disability, and these opinions can either be right or wrong.
By critically analyzing the medical model, children with facial disfigurement suffer from stigma. Rennie (2001) denotes that this is the reason as to why the medical model advocates for surgery, in order to correct their facial conditions. Correcting their conditions will make them integrate within the community, and rectify their low self-esteem. They will manage to involve themselves in various social activities, and these results to their inclusion in the society. According to Erving Goffman, stigma is a behavior and reaction of people, towards another person who does not possess the same identity as theirs. Erving Goffman denotes that there are three different kinds of social stigma, and he names them as (Tremain, 2005);
Deviation that occurs due to an individual’s behavior, such as alcohol addiction and drug use.
Stigma arising from negative ethnicity, and stereotyping. This may either emanate from religion, and or cultural influences.
Stigma may arise out of medical conditions that cause external deformations. In this category are people suffering from the Down syndrome phenomenon.
Due to stigma, children suffering from the Down syndrome phenomenon are unable to interact freely within the society. This is because of the facial disfigurements, which cause their peers to view them as outsiders.
Due to stigma, the notion of negative labeling arises. It creates a sense of us vs. them; as a result, these children cannot fully interact within the society. Their condition makes it impossible for the society to fully accept them, and include them in all aspects of their affairs. These activities can either be social, political, religious or even economic. Tremain (2005) denotes that the gaze theory depicts these children as either worthy or unworthy of societal support.
These supports may take the form of home care treatments, special privileges such as the enactment of affirmative actions in employment and school facilities, etc. The gaze theory measures the ability of children with facial disfigurements by their level of interaction in the society (Tremain, 2005). After measuring the abilities of individuals with the Down syndrome problem, the gaze theory then offers a solution to their problems. This solution is based on the acceptance of a disabled person that he or she is unable to survive without the assistance of the community (Mojo et al, 2010).
Tremain (2005) observes that when a disabled person insists on his ability to conduct his own affairs, the society leaves him alone. Tremain further denotes that these people will struggle to get the services they are entitled to, because of discrimination and stigma arising out of their refusal to give some of their rights for purposes of gaining acceptance (2005). Bluhm et al denotes that this situation leads to the exclusion of the concerned disabled person in the social affairs of the community (2009). Gaze theory can also refer to the manner in which an individual looks at images of a person, in a visual medium, and thereafter make a comparison to the same individual on a visual text. Under the gaze theory, there are social codes that regulate the way in which a person ought to look like (Bluhm et al, 2009).
These codes are strictly regulated by culture. For instance, if a person avoids another person’s gaze, it might reflect a sign of nervousness, fear or lack of confidence. Children whose faces are disfigured cannot properly maintain a gaze (Bluhm et al, 2009). The society looks at them as weaklings, and individuals who lack self-esteem and confidence. Basing on this, they are unable to interact fully within a society, and this affects their inclusion in the affairs of the society.
Despite these challenges faced by people with the Down syndrome condition, there are a number of renowned persons who have defied stigma, and discrimination to make it in the society. Most of them are in the media, and particularly in the movie industry. An example is Andrea Friedman and Paula Sage. Paula Sage is a Scottish actress who won fame for her role in the movie After life. She won the BAFTA awards, as the best female actress of the season 2003 (Kulesz, 2011). She also won the title of the best actress in 2004 during the Bratislava International film festival. Andrea Friedman is also an actress, and has starred in movies such as Life Goes On; and the television series known as Family Guy.
In 1996, Stephen Ginnz was the first actor with a Down syndrome problem to lead a motion picture production. As a result of this, Stephen Ginnz won numerous awards, among them includes, the Wasserman award for the best cinematography, the Warner Bros picture best film award, and the Martin Scorsese best film award. Stephen won all this awards in 1996 (Kulesz, 2011). Another actor is Tommy Jessop, who starred in the BBC drama known as Coming Down the Mountain. In 2008, Tommy won the Radar people of the year, human rights media award. He has also appeared in Holby city, Casualty, Doctors and Monroe. All this are British television series programs. In 2010, Tommy starred in the BBC television program, the Stone. Another notable figure is Pablo Pineda. He is a Spanish actor, who starred in the film, Yo Tambien (Kulesz, 2011). In the film, he takes the role of a university graduate, with the Down syndrome condition. Due to his role in the film, Pineda won the 2009 Silver Shell award. These actors won these awards because of the recognition of their talents by their various viewers. This recognition denotes no matter how disable a person is, with talent, and hard work, he will gain acceptance within the society.
To conclude on this paper, children with the Down syndrome condition face a lot of stigma and discrimination in the societal set up. Their peers view them as outsiders, as a result of this; they are unable to effectively participate in the various activities that their fellow children engage in. This leads to an element of exclusion, and not inclusion. Things are changing in the current century. Movements such as the European Down Syndrome association have emerged, and their main objective is to sensitize people on the various misconceptions they have regarding children with the Down syndrome phenomenon.
PERSONAL REFLECTION ON DISABILITY THAT ARIZES FROM THE DOWN SYNDROME CONDITION:
The notion that people who are disable cannot make it in society is false. These people are human beings, and need to live a normal life, just like normal people, who do not possess any form of malfunctioning in their body system. To help this people lead a normal life, it is important for the government and the society to work hand in hand in ensuring that the disabled manage to acquire social services, such as education, health services, etc.
It is the discriminative tendencies, and the stigma that the society faces that make these children to feel as if they are no longer needed in the society. It is important for the government to enact policies that are effective in tackling the mentioned problems. On this note, to help these children feel as if they are part of the society, the government and all social groups in the community must work hand in hand for purposes of making life better for these children.
