Cultural Identity and Disability – How My Sensory Processing Disorder has Shaped My Cultural Perspective

I am an American, born and raised in California in the same town that my several times great-Grandfather moved to from New York. We have lived in the town for six generations. On my great-Grandmother’s side, we can trace our heritage back to the Mayflower. In every way that matters, my family is culturally and religiously part of the white Christian majority in the United States. This is where I find my cultural identity, where I have always lived and where my family has always remained. Though my city is diverse and I am willing to learn about other cultures, I have yet to change my own very much. And yet, I find that I often feel as if I am an outsider in a culture in which I am supposed to be an insider.

In many ways, I am an outsider in my own culture, not because of my culture, not because of the tone of my skin or my outward appearance. I am an outsider because of the neurological makeup of my body. I live with a neurological disability called Sensory Processing Disorder, or SPD, which affects how my body receives and interprets sensory information. My body’s eight (yes, eight – three are internal) senses can read information just fine. It’s interpreting what they’re reading that gets confused. Some of the things that most people find completely normal I find physically painful or otherwise intolerable. If I eat melted cheese, for example, my body physically gags at the sensation and spends the next hour or two shuddering after the experience. Yes, this does indeed mean that I cannot eat pizza, or grilled cheese, or enchiladas, and yes, I do realize just how strange that seems to my fellow Americans.

This disability affects far more than just whether or not I can eat pizza, though. As a child, before I received occupational therapy, I was unable to brush my hair because the touch of a hairbrush to my head made me scream in agony. I could not wear jeans because the seams felt like needles going into my skin, and I couldn’t get my fingers around the buttons even if I could tolerate the material. I wore sandals year-round because I didn’t have the fine motor skills to tie my shoes until 3rd grade. If I couldn’t tie shoes, I definitely didn’t run right, nor did I play sports well.

The outward appearance issues were just the start. One’s ability to read and understand social cues is controlled by one’s sensory processing. Part of that facility in the brain is a sensory “filter”. Located in the frontal lobe (right behind one’s forehead), this filter will cut out sensory input that’s not important, like fans and air conditioners, and tune out conversations around a person in a busy environment so that they can focus on the one conversation in front of them. When reading body language this skill is key, as reading and interpreting body language requires that one’s senses not only pick up on small changes in someone’s facial structure, but interpret them correctly and know what they mean. If one is constantly distracted by the world around them, this is nearly impossible. Since I do not have a sensory filter, it takes me more effort and time to read someone’s body language than it does the average person.

This had several implications on my social interactions. I was outwardly extremely strange. Because I didn’t brush my hair, it became a brown bush that frizzed everywhere. Because I couldn’t wear jeans nor buttons, I donned velvet leggings and soft-fabric shirts, which often resulted in some interesting color combinations. And because I couldn’t tie my shoes, I often wore sandals in the rain. Socially, I was even worse than I was outwardly. I saw the world in black-and-white, and thought everyone else did, too – I couldn’t imagine others being mean to me, or lying to me, or spreading rumors about me. Surely everyone around me just wanted to be friends? I wasn’t able to partake in many of the games because of intense insecurities around my physical capabilities, which were entirely understandable considering my coordination issues. I also didn’t see group constructs, and had trouble identifying exclusive groups from open and friendly ones. I was always very friendly, and frequently initially got along with people, but I didn’t often keep those friends, and I think this has more to do with my differences than anything else.

As a kid, my personality was driven by my sensory issues, and my classmates didn’t understand that at all. I was constantly left out of activities if not outright bullied, especially in elementary school and middle school. Other students frequently spread rumors about me, or called me names, or lied to me. People I considered friends because we played once or twice together would, the very next day, show that they were anything but. Although this improved in high school, I often was left out of activities outside of school, and would come to find out through social media that my friends had, yet again, decided to go to an event without me. It was rare for people to come to events which I hosted, too, and I often found myself creating three or four lists of people to invite just to get a small group together. I have only two friends from my growing up years that I remain in regular contact with, and only one of those I went to school with.

As a child I always felt different, and I think a part of me knew that I was somehow different from the world around me. I never felt, however, that I should have to change who I was to fit in. I didn’t think my differences were as big as others made them out to be, and was frequently upset when I discovered that others weren’t as true as I hoped they were. And yet I constantly tried to become close to someone because I so longed for that feeling of “sameness”, of inclusion and acceptance.

I didn’t really begin understanding the differences I had until my senior year of college, where I began working on the issues I described and had much success in growing in my ability to make and keep close friends. I started researching my disability and learned how much it affected my understanding of the world around me. And the more I read, the more I finally understood the culture in which I lived – why people insisted on small talk, for example, or how to tell when someone wanted to leave a conversation. As I read, I practiced, and became so proficient in participating in conversation and reading group dynamics that very few realize I have a disability anymore. I seem a bit odd, they say when they find out, but not entirely different from the vast majority of the culture around me.

It is only within the last seven years, then, that I have felt – and been – wholly accepted and included in different groups. My current friend group is a college and young adults ministry in town. Though I was initially accepted primarily because I went to the ministry, over time this group has shown themselves to be the true friends I sorely lacked growing up. Where before I would have been left out of events, I now have group events multiple times a week. Where I once would have had to wring arms to get people to come, I now just have to make sure I invite people with enough notice for them to schedule it. I no longer feel that I have to hide my sometimes intense personality or many random quirks. For one of the first times in my life, I feel truly free around my friends, and feel sure that I can trust them – not just because I want to believe I can, but because they have earned that trust. Many new faces are currently joining our group, and we all try to include them in this community we have created, actively seeking them out and connecting with them to build the close relationships we have with each other.

Many people from minority backgrounds express feeling and experiencing an “other-ness” attitude from those around them. They are perceived as being “other”, as being “less than”, because of their different worldview, their different mindset, their different appearance. Although I have never experienced that in regards to my race, or my cultural background, I definitely understand that feeling because of the ostracism I faced in my growing-up years. And I completely understand the research that states that there are two responses people have to this experience. They either become determined to prove everyone wrong, and to show that they can do just as much as everyone else, or that their culture is just as important as everyone else, or they become determined to show just how awful they truly are (Suarez-Orozco). I have begun to realize just how much my minority students struggle with this experience, and because of my own experiences on being “outside”, I can at least relate to the feelings they must be facing.

For some, the experience of being “outside” in the American culture convinces them that the American dream is nothing but a farce, a nice piece of propaganda presented by the American majority that in no way reflects reality, but for me, the experience of being “outside” drove me to prove the American dream true. I am culturally American and I culturally believe in the American ideals because I am the product of them. I am a woman, and I have a disability. In many other cultures, both would have found me uneducated, unable to hold a job, despite my many capabilities. In America, I was given the resources I needed to achieve in school – occupational therapy, a 504 plan which supported my many sensory quirks – and was taught that I was just as capable as those around me. I was held to the same standard, and because of that I am a successful, independent adult, teaching and earning her Master’s degree. If I had not been given those opportunities, if I had not been taught to accept any challenge life threw at me,  and if I had not chosen to face those challenges in pursuit of my dreams of teaching and impacting others, I would not be the person I am today. Despite the many challenges we may face in life, it is my firm belief that each person is as capable of achieving success as they choose, and obstacles are merely there to prove that each person is more capable than even they originally thought. I hope that I can be as inspirational to my students in this matter as my teachers were to me, despite the many (and in some ways, much more challenging) obstacles they face in their lives.

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Sources:

Brown, Dr. Lorraine. “International Education: A Force for Peace and Cross-Cultural Understanding?”

Ladsung-Billings, Gloria. “Critical Race Theory and Education”. UNCA Ramsey Library Video Production – YouTube Video.  [2015]. https://www.youtube.com/watch?v=katwPTn-nhE

Pollock, Dr. Mary. “Adopting an Anti-Racism Framework”. Teaching Tolerance – YouTube Video.      [2012] Retrieved from: https://www.youtube.com/watch?v=RV3vvhQ5xf8

R, Yasameen. “Yasameen Tells Her Story “. Facing History. YouTube Video. [2009] Retrieved from: https://www.youtube.com/watch?v=gnlqgv7kv30&feature=player_embedded

Robbins, Charles L. “Social Justice – Is It Still Relevant in the 21st Century?” Tedx Talks – YouTube Video [2014]. Retrieved from: https://www.youtube.com/watch?v=Wtroop739uU

 

Suarez-Orozco, Carola. “Formulating Identity in a Globalized World”. Globalization: Culture and Education in the New Millenium. [2003].

Unknown Author.  “A New Concept of Global Identity”. facinghistory.org. Retrieved from: https://www.facinghistory.org/civic-dilemmas/new-concept-identity

 

 

 

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