One topic of our reading this week focused on the pros and cons of labeling. One obvious benefit of labeling is that a child with a disability is eligible for beneficial services such as special education and therapy. However, many people argue that a major con of labeling is the stigma that is attached to such labels and the impact that these stigmas have on the socialization of a child with a disability.
Jason is a 19 year old boy who has been a family friend for almost my entire life. Jason was diagnosed with autism at the age of 18 months. I watched Jason grow from a fun-loving little boy into a kind and happy young man who opens his heart up to anyone that spends any amount of time with him. Although Jason has minimal verbal skills, he is able to communicate through gestures, eye contact, and most importantly his smile. When Jason was 9 years old, both his sister Jenna and my sister Emma started taking cello lessons at our elementary school. One night, Jenna had left her cello out after "attempting" to practice. Jason's parents recall hearing a beautiful sound coming from the basement. They were both startled and confused because they had just heard Jenna practicing that night and it had sounded like a cat scratching a chalkboard. They became even more shocked when they discovered that the sound was coming from Jason. Jason's doctor described this phenomenon as savant syndrome which is an instance where a child with a mental disability demonstrates prodigy like abilities in a subject such as music.
This marked the discovery of Jason's gift. We soon learned that he could repeat any melody that was played out to him. With this remarkable discovery, Jason's parents tried to get Jason involved in the elementary school's orchestra program. Although Jason was allowed to join the orchestra, he was not allowed to join a quintet like all the other students were able to. Both the orchestra director and the parents of other students felt that it would be inappropriate and unfair to the other students because Jason had no means of communication "since he was autistic". That was the first perceived stigma about autism that really hit Jason's mom hard. Although Jason could not talk, he had several other means of communication. At Jason's first orchestra recital, both mine and Jason's families heard all the other parents gossip about the autistic kid that had joined the group. As the children filed out on stage, we noticed a group of students mocking Jason's facial expression and his shaky body movements. When we went to meet Jason in the hallway after the performance, we heard several students refer to him as a retard and "the kid without a brain". We were used to Jason being made fun of in the school setting, but this mockery was hard to take because Jason had just as much skill, if not more, as the rest of the students. After this experience, Jason's mom felt it was best for Jason to do private lessons because she felt he was discriminated against and made fun of because of his autistic label. The stigmas of labels and the way society perceived them really impacted Jason's socialization and hurt Jason's family, especially his mother.
The article "What do you mean, what's wrong with her?: Stigma and the Lives of Families with Children with Disabilities" really resonated with me and Jason's experience with stigma. This article discussed a study in which 81 mothers of children with disabilities completed surveys about stigma and the impact that these stigmas have on both these mothers and their children. This article discussed how disabilities are often perceived as negative traits since independence is so valued in our society. These negative perceptions often overshadow characteristics that are often more descriptive and telling of the individual in a certain social setting. Like in Jason's case his peers and their parents focused on his autism rather than his amazing musical abilities. The authors of these studies suggest three hypotheses that potentially explain the relationship between maternal perception of stigma and the impact that these perceptions have on their child's socialization. The first hypothesis states that a mother who perceives the stigma of her child's disability as negative is more likely to feel sad, worried, emotionally stressed, and resentful. Jason's mother's perception of Jason being devalued and discriminated against made her emotionally exhausted and resentful that his disability was getting in the way of his talent. The second hypothesis states that maternal perception of stigma is negatively related to their child's interaction with peers their own age outside of the classroom setting. This was true in Jason's situation as well. The orchestra incident made his mother very protective so as a result she rarely exposed Jason to peers his own age because she believed she was sparring him harassment and humiliation. The third hypothesis states that perceived maternal stigma is positively related to the mother's preference for her child to interact with others who understand the disability in the way that they do. So as a result of this stigma, children with disabilities are separated from those without disabilities.
Both Jason's story and this article explain how society's negative pre judgement and attitude towards children with disabilities hurt both the child's socialization and the parent's state of mind. Instead of being to enjoy Jason's talent his mother focused all her energy on protecting her son from the negative stigma of autism. This article really makes you think about how society needs to take steps to put these negative stigmas to rest. Society's perceptions of autism overshadowed Jason's voice as a cellist.
article link: http://www.sciencedirect.com/science/article/pii/S0277953602005117
Jason is a 19 year old boy who has been a family friend for almost my entire life. Jason was diagnosed with autism at the age of 18 months. I watched Jason grow from a fun-loving little boy into a kind and happy young man who opens his heart up to anyone that spends any amount of time with him. Although Jason has minimal verbal skills, he is able to communicate through gestures, eye contact, and most importantly his smile. When Jason was 9 years old, both his sister Jenna and my sister Emma started taking cello lessons at our elementary school. One night, Jenna had left her cello out after "attempting" to practice. Jason's parents recall hearing a beautiful sound coming from the basement. They were both startled and confused because they had just heard Jenna practicing that night and it had sounded like a cat scratching a chalkboard. They became even more shocked when they discovered that the sound was coming from Jason. Jason's doctor described this phenomenon as savant syndrome which is an instance where a child with a mental disability demonstrates prodigy like abilities in a subject such as music.
This marked the discovery of Jason's gift. We soon learned that he could repeat any melody that was played out to him. With this remarkable discovery, Jason's parents tried to get Jason involved in the elementary school's orchestra program. Although Jason was allowed to join the orchestra, he was not allowed to join a quintet like all the other students were able to. Both the orchestra director and the parents of other students felt that it would be inappropriate and unfair to the other students because Jason had no means of communication "since he was autistic". That was the first perceived stigma about autism that really hit Jason's mom hard. Although Jason could not talk, he had several other means of communication. At Jason's first orchestra recital, both mine and Jason's families heard all the other parents gossip about the autistic kid that had joined the group. As the children filed out on stage, we noticed a group of students mocking Jason's facial expression and his shaky body movements. When we went to meet Jason in the hallway after the performance, we heard several students refer to him as a retard and "the kid without a brain". We were used to Jason being made fun of in the school setting, but this mockery was hard to take because Jason had just as much skill, if not more, as the rest of the students. After this experience, Jason's mom felt it was best for Jason to do private lessons because she felt he was discriminated against and made fun of because of his autistic label. The stigmas of labels and the way society perceived them really impacted Jason's socialization and hurt Jason's family, especially his mother.
The article "What do you mean, what's wrong with her?: Stigma and the Lives of Families with Children with Disabilities" really resonated with me and Jason's experience with stigma. This article discussed a study in which 81 mothers of children with disabilities completed surveys about stigma and the impact that these stigmas have on both these mothers and their children. This article discussed how disabilities are often perceived as negative traits since independence is so valued in our society. These negative perceptions often overshadow characteristics that are often more descriptive and telling of the individual in a certain social setting. Like in Jason's case his peers and their parents focused on his autism rather than his amazing musical abilities. The authors of these studies suggest three hypotheses that potentially explain the relationship between maternal perception of stigma and the impact that these perceptions have on their child's socialization. The first hypothesis states that a mother who perceives the stigma of her child's disability as negative is more likely to feel sad, worried, emotionally stressed, and resentful. Jason's mother's perception of Jason being devalued and discriminated against made her emotionally exhausted and resentful that his disability was getting in the way of his talent. The second hypothesis states that maternal perception of stigma is negatively related to their child's interaction with peers their own age outside of the classroom setting. This was true in Jason's situation as well. The orchestra incident made his mother very protective so as a result she rarely exposed Jason to peers his own age because she believed she was sparring him harassment and humiliation. The third hypothesis states that perceived maternal stigma is positively related to the mother's preference for her child to interact with others who understand the disability in the way that they do. So as a result of this stigma, children with disabilities are separated from those without disabilities.
Both Jason's story and this article explain how society's negative pre judgement and attitude towards children with disabilities hurt both the child's socialization and the parent's state of mind. Instead of being to enjoy Jason's talent his mother focused all her energy on protecting her son from the negative stigma of autism. This article really makes you think about how society needs to take steps to put these negative stigmas to rest. Society's perceptions of autism overshadowed Jason's voice as a cellist.
article link: http://www.sciencedirect.com/science/article/pii/S0277953602005117