This essay will discuss what stigma is and in which ways it affects not only people with Intellectual Disabilities (ID) but also their families. It will analyse the definition of stigma and the different types of stigma as well as the impact of it on families and children with Intellectual Disabilities. Finally, this essay will suggest few measures that can be taken to improve their wellbeing. According to the World Health Organisation, of the 15 billion people in the world affected by disability, around 300 million have an intellectual disability. This last group is usually less understood, more stigmatised and present disadvantages more often comparing to other groups affected by other disabilities.
Firstly, it is necessary to look at the definition of stigma. According to the Cambridge Dictionary, stigma is defined as a strong feeling of disapproval that most people in a society have about something, especially when this is unfair. Although this definition is relatable to the term that is going to be discussed in this essay, there is a better conceptualisation of the term “stigma” that we find in the article “Self stigma in people with intellectual disabilities and courtesy stigma in family carers”: Stigma is a process by which certain groups, such as those with mental illness or intellectual disability, are marginalised and devalued by society because their values, characteristics or practices differ from the dominant cultural group. Stigma occurs though a combination of stereotyping, prejudice and discrimination (Rüsch, Angermeyer, & Corrigan, 2005) in the presence of an imbalance of power between different groups, and fuelled by social, economic and political differences (Link & Phelan, 2001).
If there is an explanation of why stigma happens, it would be the human response toward what we do not know and the lack of information. It would also allow people with no learning disabilities to feel better about themselves. It also could be related to the class system, as for so many centuries, humans have had the need to follow a hierarchy organisation where a group of individuals have a more privileged position than others. The fact is that this distribution does not differ too much from the class distinction theory.
These three concepts mentioned above of stereotyping, prejudice and discrimination are what affect people with Intellectual Disabilities (ID) the most. In the first place, a stereotype is a set idea that people have about what someone or something is like, especially an idea that is wrong (Cambridge Dictionary). This is the cognitive part of the process, as stereotypes are formed according to the belief that an individual has about either a specific group of people or oneself. It has a negative connotation. An example of this concept in people with Intellectual Disabilities would be the belief that these individuals cannot do anything by themselves. Prejudice is the affective part of the process, it is normally formed without enough knowledge and it causes a negative emotional reaction based on an unreasonable opinion or feeling. One example of prejudice about people with Intellectual Disabilities would be the feeling of pity toward them.
The last term is discrimination. This one is related to the prejudice, as it is the behavioural response to this feeling. It is how we manifest our opinions about a specific stereotype. An example of this would be to do everything for people with these characteristics not allowing them to do anything by themselves. This is in response to the pity feeling toward them and is based on the stereotype that believes that people with Intellectual Disabilities cannot do anything by themselves.
As I mentioned in the definition of stereotype, a stigma as well as a stereotype, prejudice and discrimination, are not only a public matter or an opinion about others but it also can be an invidual problem. An individual can be self-stigmatised, which means that they believe in these stereotypes, have negative emotional reactions about themselves and their behaviour can change according to these two factors reinforcing the discrimination. This self-stigma conditioned by society determines the way they behave and affect them even more than the public stigma.
Thus, internalised stigma may have deleterious consequences on wellbeing such as reducing self esteem, increasing the severity of psychiatric symptoms and reducing quality of life (Livingston & Boyd, 2010). Although self esteem is one of the most important consequences, as it affects other aspects in life, internalised stigma triggers other problems that need to be considered such as low-self-worth and low-self-efficacy. The study of Petrovski & Gleeson (1997), found out that there are connections between the levels of stigma and the self esteem, in terms of feeling less attractive and capable, at the same time affecting their self-confidence and how they interact with friends and other people.
However, this problem not only affects them in their personal life but also affects them in their working life. Although the way they have been treated in their working life has changed historically, employment is still a current problem for people with Intellectual Disabilities. For these individuals, the workplace is crucial for their integration in society and to feel fulfilled. Nonetheless, those individuals with Intellectual Disabilities who have a job are usually stigmatised through frequent beliefs about incompetence, social inadequacy and extensive needs (Kirsch et al., 2009). Despite the several changes on legislation and policy, individuals with ID have more difficulties finding a job comparing to individuals with no ID.
In most cases, this is due to the underestimation of the capabilities of people with Intellectual Disabilities, as sometimes what they can or cannot do is assumed. These assumptions are often based on our perceptions and not proved or tested. When it comes to employers and co-workers, there is a predisposition to prejudge these individuals’ abilities based on stereotypes that entail a discriminating behaviour against workers with an intellectual disability. This negative bias towards people with ID is described as an “attitudinal barrier” (Lysaght et al., 2012; McLaughlin, Bell, & Stringer, 2004). In line with this attitude, we find other preconceived beliefs attached to it, such as the poor efficiency, slowness, extra cost of their employability or their elevated error margin.
On the other hand, there is other types of stigma that do not affect directly people with Intellectual Disabilities. Courtesy and affiliate stigma affect deeply carers and relatives of individuals with Intellectual Disabilities. This stigma may result in family members being teased, abused, blamed or considered responsible for the person’s disability (Larson & Corrigan, 2008). It affects mostly mothers of children with Intellectual Disabilities since mothers belong to the main carer’s group of children with learning disabilities. However, this stigma also affects other carers such as fathers, siblings, other relatives or even professionals who deal with them frequently. This group of people who take care of an individuals with Intellectual Disabilities, and especially mothers, have been blamed for their children’s behaviour causing them certain stress when they are in public or outside home. This is the main reason why some mothers prefer to deal with their children at home and do activities there, so they have the situation under control and they do not have to deal with the extra peer pressure and disapproving attitudes from others.
According to Ryan (2005), Mothers report being blamed for younger children’s disobedience, and disapproval and lack of acceptance of older children who behave inappropriately in public. Affiliate stigma is more often reported by mothers whose children do not have evident characteristics such as autistic children. In some cases, these carers are not only stigmatised by their community but also by their own families and friends. This stigma cause them a physiologic impact affecting their socialisation, private life and relationship with others, as it makes them feel apart and makes everyone else think that taking care of them is the only task in life. This can affect their self esteem and the way they see themselves as well as affect their socialisation. Their entire life depends on their children’s disability. This type of stigma is more common than one could usually think.
Linked to the stigma that affects families, we find several behaviours for their part that feeds and increases both stigmas. These behaviours are based on an over-protective attitude and the denegation to these individuals with Intellectual Disabilities of the compliance of tasks by themselves. In the first place, this conditions their capabilities as if they think they cannot do something by themselves they will never try. In the second place, it also affects families since they pay too much attention to their children putting aside their own personal life and needs. In some cases, the relatives taking care of them assume this responsibility by themselves, becoming a big challenge. A study affirms that parents, who have a child with an Intellectual Disability and discuss so with others or recognise their disability in public, experience less stress than those who do not recognise it or try to hide it (Baxter and Cummins, 1992).
In regard to the impact of the stigma on individuals with Intellectual Disabilities, there are different areas to analyse. One of these areas is the academic world. People with an Intellectual Disability experience high rates of stigma at school. Many of these individuals leave school due to the pressure and stigma that they suffer from other children and teachers. Currently, in most schools they are not completely integrated at class. Their schoolmates treat them like people who are not able to play as other kids would do or, simply, think that they are dangerous or aggressive because of their appearance or because they behave differently. This is not only a matter of children. Teachers stigmatise children with an ID underestimating them or thinking that they will disturb the course of their classes if they stay there. In many schools, children with an ID are gathered in other rooms with specialists on the field. This affects their socialisation and does not allow them to be completely integrated.
Another issue of the stigma on people with ID is the increasing cases of violence surrounding them. The lack of tolerance is one of the most common problems that participates in this high rates of violence. The fact that nowadays we hear more about violence and hate crime problems against these individuals does not mean that is a new issue. As the report “Living in Fear: Better Outcomes for people with learning disabilities and autism” affirms, the media, official sources such as public enquiries and a small number of recent research studies have all highlighted disabled people’s experiences of victimisation in the community and in particular the problem of disability hate crime. It also states that in 2004, the National Learning Disability Survey for England found that 43% of people with learning disabilities had reported being bullied at school. Some examples of this violence could be being mugged, abused, hit or treated violently by other members of the community, carers or even police department or other types of security guards. According to the report mentioned before, people with Intellectual Disabilities who had suffered an incident and went to report it to the police did not have the impression of being understood and they affirm that police do not actually seek to protect them.
Last but not least, there is another stigma that affects directly people with intellectual disabilities, and this stigma attached to their romantic relationships. There are endless prejudices about the personal life of people with ID. In the first place, they are not used to receive any sexual education, as most times they are considered as individuals who should not have romantic affairs, and even more important, not children. This stigma does not look into the type and grade of the disability. It is simply considered “unnatural”. Sexual education should be given to these individuals, as they probably need it the most.
Several measures could be taken to improve their conditions in the workplace. The first and most important step to this new stage is the transition from education to the working life. They need to be prepared for the competitive working world and they need to feel they are prepared to do so. Some of these activities for the transition are matching individual student needs, preferences, abilities, and interests with jobs in the community; providing instruction for the development of postschool adult living objectives; and offering gradual community experiences, such as use of public transportation, to assist in achieving functional independence (Rutkowski, Datson, Van Kuiken, & Riehle, 2006).
Regarding courtesy and affiliate stigma, there are few measures that would help on the normalisation of the everyday lives of families in charge of an individual with an Intellectual Disability. Government should invest more money in programs to inform citizens about the normalisation and integration of these families and also how this affect their lives as well as some advice about how to respect and treat them. It is also important to deal with this matter at early ages, for instance at schools, where children can learn the importance of respecting others even when they look or behave differently.
Apart from the workplace, school is the second most frequent place where discrimination and stigma on people with Intellectual Disabilities take place. Ironically, school and education institutions are the most effective methods to end with this stigma on individuals with an ID. It is very important to normalise it at schools and impart an education based on tolerance and respect, as in education is where behaviour and attitude starts. An education based on respect will increase the chance of acceptance in the future. It would be an effective measure to impart this type of values at school. In regard to hate crime and violence, once again the key is the education. Principles such as tolerance must be taught at school. Usually, hate crimes come from ignorance and prejudices. It would be a method of prevention to give more information to the students about people with learning disabilities and the importance of being tolerant and respectful.
To conclude, stigma in people with learning disabilities is expound in so many ways. As we have seen, some of them not only affect them but also affect their relatives. Most of this stigmas are based on the lack of information about these individuals and it needs to be treated and normalised since school to make sure that the stigma is reduced and that society builds an atmosphere based on respect and tolerance. These measures, and most importantly those based on education, will mitigate hate crimes and violence against people with Intellectual Disabilities and will improve their wellbeing. As Hellen Keller said, ““The highest result of education is tolerance”.
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