As human beings, we generally fear what we do not understand, and this predisposition underscores why in most cases we react with a defensive approach to an unfamiliar environment or behavior from other people by either keeping off completely where possible or keeping contact to the utter minimum.
The same disposition is evident when most people encounter other people with disabilities. We all have heard of someone who did not go to a certain school, get a certain job, or join a certain sport because of a certain disability. We have even heard of parents who hide their children away from visitors or leave them alone at home for they do not want to get the feeling of disapproval from what people might say or how they might look at their children.
Some even go a step further and send them away to boarding institutions because they are afraid of the responsibilities that come with these conditions. This tendency underscores stigma, which is “a bad reputation that something has because many people disapprove of it, often unfairly” (Falk 71).
Several institutions deal with such disabilities, and each of them is specially designed depending on the nature of the disability. For instance, there are special schools for the blind, others for the deaf, and others for people with various physical disabilities and deformities and mental disorders.
This paper looks at two such instances of disability namely the Tourette’s syndrome as illustrated by Dr. Oliver Sacks, a famed medical writer, in his work “A Surgeon’s Life” and a real life example from my neighbor, Daniel, who is a 12-year old living with Autism. The paper looks into the lifestyles and behavior of Dr. Bennett, a character in Dr. Sacks’ story, and Daniel and how they cope with the challenges that face them.
The Tourette’s syndrome is a condition that affects the normal functions of both the body and the mind of an individual, hence causing them to do or utter inappropriate things given the circumstances and environment. This aspect tends to have a profound effect on the social life of the individual. It mainly manifests in early childhood and may progress as the child grows into adulthood.
Earlier definitions looked at it as a ‘moral’ disease affecting the will of the individual, a psychiatric disease to treatable through psychoanalysis and psychotherapy, and later on as a chemical disease resulting from an imbalance of the neurotransmitter dopamine. However, Dr. Oliver views these definitions as inadequate and suggests that the complexity of the disorder requires us to look at it not from these one-sided angles, but from a combination of all these angles, as a biopsychosocial disorder.
Autism, on the other hand, “is a neurological disorder that affects how information is processed in the brain leading to impairment in social interaction and communication” (Volkmar et al. 315). Daniel’s speech, for instance, is partially slurred and one would need to be around him for a while in order to make out familiar sounds and words, and thus understand what he is saying. It is also characterized by repetitive behavior.
Daniel moved into my neighborhood two years ago with his father. When I first saw him, he seemed like every other normal 12-year-old boy. It took me a while to notice some of his unique behavior. He rarely went outside to play and when he did, he would sit alone staring at pieces of broken glass and occasionally smiling.
He would also stand abruptly, pull his pants up, and dust them off at the knees. He has slurred speech and prefers to greet people with a hug rather than a handshake. This is similar to Dr. Bennett’s behavior in Dr. Sacks’ story. Similarly, Dr. Sacks talks of Bennett’s obsessive touching of both objects and people. He describes this tendency as Dr. Bennett’s impulsive need to keep things in symmetry and synchrony.
For instance, he talks about Dr. Bennett’s obsessive stroking of his beard and aligning coupled with realigning his glasses just as Daniel is obsessed with broken glass and pulling up his pants. In the story, Dr. Bennett explains that these actions feel instinctive and primal. He sometimes calls Tourette’s “a disease of disinhibition” (Sacks 3).
Daniel becomes unsettled and enraged whenever someone tries to keep him from doing this “pull and dust” maneuver and it usually takes his father’s experienced persuasion methods to calm him down, as he tends to get very destructive. This aspect in effect puts him in danger of hurting himself and other people around him and destroying property without his intention. This trait is similar to that of Dr. Bennett who throws things at the refrigerator when he is angry.
This kind of behavior tends to have a negative impact on both the autistic individual and the people around him or her. For instance, Daniel barely has any friends, as kids in the neighborhood are afraid that he might throw things at them and those who want to play with him cannot understand what he is saying, and thus they just keep off altogether. Therefore, he has learnt to play on his own and he seems comfortable with it, much like Dr. Bennett who used to go on long walks and hikes alone when he was a boy.
Aside from the fact that Tourette’s turns Dr. Bennett into an introvert, it also brings out his ingenuity and natures his passion. Daniel too seems happier playing alone and seems especially intrigued by glass. He collects pieces of broken glass and sometimes sits outside his house for hours staring at them. He just recently moved to a boarding school for kids with special needs, mainly because he was becoming a victim of bullying and element of derision by kids at his former school.
Besides the fact that he is a grade behind kids his age, he does quite ok in school. Maybe someday, he will work in his dream career, whatever it is, just like Dr. Bennett who does his work as a surgeon remarkably well despite his compulsive behavior and extreme impulsiveness.
The most outstanding aspect from Dr. Bennett and Daniel’s story is that people with disabilities and can live completely normal lives and do extraordinary things. They can get married and have children. Their lives are hard enough even without everybody else treating them with disapproval.
The more people learn about disabilities, the less afraid of they will be, and thus there would be less stigma regarding the same. It would also make it much easier for normal people to understand victims of disability and in the process get to know them for the incredible people that they are, viz. human beings with special abilities as opposed to disabilities.
Falk, Gerhard. Stigma: How We Treat Outsiders, New York: Prometheus Books, 2001. Print.
Sacks, Oliver. “A Neurologist’s notebook: A Surgeon’s Life.” The New Yorker Magazine 16 Mar. 1992:1-9. Print.
Volkmar, Fred, Kasia Chawarska, and Ami Klin. “Autism in infancy and early childhood.” Annual Review of Psychology 56.1 (2005): 315-36. Print.
Disability is not Inability: A Different Perspective