I spoke these words often when talking about my child, referring to phenomena I saw that did not meet my expectations of normalcy. His differences were not easily discernible; no physical attributes gave merit to my feelings. His masked difference with its manifestations led me to make conclusions and inferences based on my own frame of reference. For me, I knew what I knew. What did not “fit” my knowing led me to conclude that something was amiss and had to be fixed. Otherwise, my son would not be like the rest of the world or at least like the world that I knew.
Why did I act in the way I did? More importantly, how did my actions affect my son? My knowledge and experiences make new situations familiar and comfortable. When faced with situations that do not conform to what I know, I become uncomfortable. As the comfort level decreases, I adjust to the situation by forcing what is creating discomfort into my frame of reference, my history of experiences. If the observed behaviour does not fit my experiences, then I label it “not right” or “wrong”; this labelling process allows my comfort level to rise. The label categorises it in a safe way by allowing me to perceive it without it threatening my sense of reality.
I do not believe I differ much from others in feeling and reacting this way. In a moment’s time, a person views something, relates it to previous knowledge, interprets it to fit personal reality, labels it, and decides to accept or reject it. People do this hundreds of times a day without giving much thought to the process. This process often results in people perceiving themselves through the eyes of others as “not right” when, indeed, they are very “right.” They may differ from another’s reality or experience. Nevertheless, they are right according to how they were formed and how they developed.
To demonstrate this phenomenon, think about this scenario. You drive your car along a city street, and as you near an intersection, an apparatus hanging from wires stretched across the intersection is beaming colours at you. You see three lights on this apparatus. The top light is red, the middle yellow, and the bottom green. The top light shines brighter than the other two. You see the light (red), its position on the signal, and the fact that you are approaching an intersection. What do you do? You take your foot off the accelerator and place it on the brake, stopping your car. Why? You stop because you have associated a red light at the top of an apparatus– at an intersection– with a specified behaviour — stopping your car. You learned this behaviour to operate a car safely on the streets shared with other drivers in cars. You know that failure to do so causes accidents or a traffic ticket. Both of these consequences are undesirable; therefore, you accept this norm and comply.
Do you stop if you are the only car at the intersection? Probably. Most people do. Do you stop if you are the only car and it is in the middle of the night? Again, probably you do as most would do. Why? Because we associate a behaviour with a certain stimulus, accept it as “right,” and incorporate it into our frame of reference.
What would happen if, one morning, we drove to work and all the lights were switched? The green was now on top, then the yellow, and finally the red on the bottom. More than likely, we would react to the colour, not the position of the light, but our compliance would make us feel uncomfortable because the situation was “not right.” If the change were permanent, we would adjust our thinking and accept it because red still meant stop, yellow–caution, and green–go on. In time, this new situation would become totally accepted into our mode of thinking. The
unfamiliar positioning of the lights had elements of the familiar; therefore, this new learning is incorporated in our thinking and becomes acceptable, reducing our discomfort. This familiarity allows us to adapt to the change and adopt it into our lives.
We do the same thing when we think, talk, and act and perceive others thinking, talking and acting. Our past experiences shape our perceptions of others and influence our level of comfort with their behaviour. If we are raised to think, talk, and act in specific ways, other ways will make us uncomfortable. We respond to this discomfort by categorizing and labelling. Our comfort level rises when we label the unfamiliar as “not right.”
The difference between human behaviour and the new traffic signal is that there is no one standard for human behaviour. There are accepted developmental milestones, culturally acceptable behaviours and customs, rules of protocol and social interaction; yet, by the very nature of all that is human, there is variation between individuals and groups of individuals. The accepted norms are so ingrained into our being that any deviation makes that difference perceived as “not right.”
This discussion illustrates how caring people often create an atmosphere of alienation by the choice of language when viewing another person. Who is to really decide what is “right” when discussing human behaviour? Expressing differences in terms of right or wrong creates a judgmental atmosphere in which people may perceive themselves to be patronized or talked down to. To continually hear that one’s way of thinking, talking, and acting is not right can mislead an individual to believe he is “broken” and in need of “fixing.”
So, how can discussions of differences take place to further understanding and acceptance? A discussion based on mutual respect is one way. When discussing my son’s language development, should I say that he is “delayed in expressive language?” Should I say that his “inferential comprehension was lower than it should be?” What would be a better way to express these issues?
We can begin by rethinking the language we use, the labelling we do, and the importance we place on doing things our way. We must tell our children and other XXY’s that they have qualities and strengths that they can develop. We must validate that they bring different perspectives to the traditional world. Encouraging the growth of their strengths will enable them to live full and successful lives — a goal every parent has for his/her child. The genetic signature plays no role in this desire, nor does it separate our children and ourselves from any other child and parent. As a parent of an XXY child, I want to provide support and encouragement. I finally understand that this desire does not begin by labelling behaviour to ease my own discomfort. It starts with entering a dialogue with my son to identify what he wants, not what I perceive he needs.
The traffic signal creates a safe place for complex human interaction. Our association should create a place to listen to XXY adults and hear what they want us to deliver. We can each provide the environment to explore these issues with open dialogue and mutual respect.
Initially compiled by Susan Johnson for The American Association of Klinefelter Syndrome Information and Support (AAKSIS)