Recently, my husband and I joined my sister-in-law as she treated my son to a day at a Science and Tech Museum. There, an anatomical exhibition of the human body was on display along with educational and insightful information about wellness, disease, genetic disorders and the mysteries of the human brain.

As my son looked around, I watched in wonder as he absorbed the latest findings on the functions of the human body. What was surprising to me was the amount of time my son spent in the gene exhibit reading about genetic disorders. What caught his eye in particular was a graph that showed the prevalence of various genetic disorders in the United States since the 70′s. His fine-tuned eye and finger followed the line on the graph that ranked genetic deafness.

I was glad to be nearby while he studied this graph. With his head turned sideways and his curiosity peaked, he asked, “Mama, what does genetic disorder mean?”

Using a nearby display to help answer that questions, we read that the words “genetic disorder” together described how different “illnesses, diseases or deficiencies are inherited from certain patterns or mutations in a person’s family genes.”

As we read this together, I could see my son’s face scrunch up as he tried to process what he was learning. Reading further, we found the word “disorder” on the display and read that having a disorder meant “having an abnormal physical or mental condition.”

After reading this, we were both quiet for a moment as we mulled over this rather depressing “medical” interpretation. Then my son pointed out the word deafness as it pertained to a genetic disorder on the graph. Together, we noted where and when there were higher numbers of deaf children born in the United States. Those numbers were next to other numbers indicating various “other genetic abnormalities in children,” as they put it.

After reading this, we both kind of looked silently at the display. Then came the question I knew was coming as my son put two and two together. With a tongue-in-the-cheek tone, my son comically asked, “So, Mom? Being deaf means you’re abnormal?”

I had to chuckle. While I’m sure my 6th grader occasionally thinks I’m weird, it was my hope that he did not view me as abnormal just because I am deaf.

I briefly explained how the information displayed was a medical definition of deafness, and not a cultural one. I clarified how most people who are born deaf to deaf families as a result of inherited genetic patterns do not view being deaf as abnormal at all. In fact, they are quite proud to be deaf and view themselves as capable and as fully functioning members of society.

I further pointed out how many deaf people — not only those who were born deaf, but also, some of those who have become deaf after they were born — like myself for example, often reject this medical interpretation of “abnormality” and live with the more accurate, appropriate and empowering knowledge that they are fully capable, that they can do anything, and that they are not broken, deficient, disabled, abnormal or needing to be fixed.

We continued to read the display as it narrowly told of various deficits children and adults with genetic disorders have, and the challenges they must deal with in their every day lives due to the absence or mutation of certain genes. As my son read on, he turned to me one last time and said, “Mom, I’m glad I don’t have a genetic disorder.”

While I do understand where this was coming from, my son’s innocent comment struck a dissonant chord in me. While I believe my son understood my clarifications between the medical view of “deafness” and the cultural view of “being Deaf,” he was not yet able to transfer this view to other diverse groups of people. Unfortunately, the unintentional result of those medical definitions on display at that museum only serves to create more human distance, and a greater sense of separateness, in my opinion. Looking in my son’s eyes, I could detect his own internal conflict as he struggled with feelings of sympathy: “I’m sorry for those children,” and a guilty sense of relief: “Thank heavens it’s not me.”

But sympathy and guilty relief were not the lessons of the heart that I wanted my son to walk away with. As I followed him across the museum floor that afternoon, I made a mental note to return to this topic and explore it further so that I might arrive at some insightful way to instill a different perspective and value in my child about diverse people.

I noted that certain demonstrations at the museum were interactive and set up so that children could actually try to “experience” having a disability if they wanted. They could sit in a wheelchair and roll themselves around, or they could put on a pair of headphones to block out the sound and try to watch a TV they could not hear. They could wear a blindfold and be lead around a room by their peers or they could project their own face into the image of a different species (i.e.: an insect) to see what they might look like or how they might feel being a different size or shape. Unfortunately, too often in the education or discussion of diversity, disability and social justice, the focus highlights the differences rather than the similarities. Challenges, hardships and injustices are portrayed and viewed as “theirs, not mine” or something that happens to “them, not us.”

For example, in school, children are sometimes asked to think about how it might feel to be teased because you have a disability or different colored skin than most of the other children. We sometimes subject them to simulated “role plays” that supposedly allow the children to feel, for example, what it’s like to be “stuck in a wheelchair,” or to be “deaf” or “blind.” At best, this approach fosters sympathy, and at worst, as one can see from my son’s naive comments, if might foster a guilty sense of relief: “Thank heavens it’s not me”.

Unfortunately, the unintentional result of these sympathy-training “role plays” and medical interpretations is that they tend to create even more distance and a greater sense of separateness by marginalizing individuals because of their differences, challenges or diverse nature rather than actually teaching them how to value one another.

In a follow up conversation with my son later that week, I carefully explained how we must take care not to reinforce the notion that those with diverse genetic, racial, gender, religious or cultural backgrounds are objects of pity. Valuing one another as equals cannot be built on a foundation of pity. Instead, I explained how we must build on our commonalities and shared human experiences.

This is my hope for my son, as well as people within the deaf community:

• That we move beyond mere tolerance, and instead, seek to empathize.
• That we share that sense of: “I know what you mean.”
• That we strive, not only to understand, but to value one another.
• That we look for places and spaces where our human and deaf experiences intersect rather than where they divide.

The development of empathy and shared understanding between individuals of diverse backgrounds and ability is crucial if our world is to survive into the next century. Moving from tolerating to valuing is also critical if the deaf v/blogosphere is to survive into the years ahead. We need individuals who will work together to address the common issues of inequity and injustice that still face the diverse population of deaf people today. This cannot happen if we continue to look at what divides us and makes us different from one another.

If all people are to be considered of equal worth, then our relationships with one another must be viewed as mutually beneficial. Tolerating our diversity isn’t the same as valuing it. We need to move away from definitions and interpretations that marginalize us based on our individual differences or backgrounds, and move toward recognizing how we all connect and belong. When we value others, we acknowledge them not merely for the things that they do or the contributions they make, but simply for who they are, and for the deeper intrinsic worth they add to our world just by being there.

I hope my words were an inspiration to my son and that my husband and I continue to see him grow into the sensitive, kind, and compassionate young man we know him to be.

Posted by LaRonda on Tuesday, January 22nd, 2008 at 5:47 am.