I realize that I have not yet divulged why I am so interested in the field of (dis)ability studies. Now, I must confess that I have a very close relationship to the (dis)abled community. I, myself, am not (dis)abled, but my younger brother, Spencer is. I’d like to share our, mine, his, and our families’ story with you. I’ve shared this story many times and via several platforms, but I still think it is important to share my past in order for others’ to understand my present and future work.
When I was seven years old, my brother, Spencer was born, and I immediately found my best friend within this eight pound 9 ounce cherub. Spencer was a typical baby boy. He cried frequently and drooled far too much, but that is what one expects from a baby, right?. It wasn't until he reached the age of two that my parents (and I suppose myself, but I was in denial) realized that something was not quite right. His speech wasn't progressing as we all thought it should, and he would not even acknowledge or respond to any vocal communication that was directed towards him. Additionally, Spencer began to develop strange habits. I still vividly remember watching him sitting on the living room floor, staring the ceiling fan, and gazing at one single blade going around and around and around. He wouldn't move for hours. It was as if he was looking at some bigger picture—one that we all couldn't see. I believe this curious routine was the impetus for my parents to seek outside help. They were afraid and confused, but I now know that these emotions are just a taste of the world my brother experiences every day when he travels outside the comfort of his home.
Many months, tedious observations, and nerve racking scans followed our initial recognition of Spencer's odd behavior, and he was eventually diagnosed with Pervasive Development Disorder-Not Otherwise Specified, or as others call it, “classic Autism” (Autism Speaks). This discovery may have happened over fourteen years ago, but it still affects my brother's life to this day. Spencer is a high school school sophomore, and he is academically behind his peers, although he is a year or two ahead in age, and, I concede, worldly wisdom and apathy. Spencer tells me that he has no friends, sits alone at lunch, and is constantly bullied due to the stigmatization that I feel is caused by his (dis)ability. Since his diagnosis, my family and I have struggled to explain Spencer's disability to ourselves, others, and most importantly, Spencer.
Last semester, I was asked what I was passionate about—something I could research for a graduate class. My initial thought was my family; they are and always will be my first priority. However, I was unsure how I could really combine my personal life with my academic work. After much discussion with one of my mentors, I realized that I had always wanted to know more about my brother’s (dis)ability, so I could better understand him, become even closer to him. That is when this work began.
Throughout that same semester and the one following, I delved into (dis)ability studies and its relation to children’s and young adult literature, specifically multicultural children’s literature (as (dis)ability has its own culture within itself). It was until this summer, when I enrolled in course entitled Popular Culture in Literacy Classrooms and Other Educational Venues, that I began to expand my research and combine this interest in (dis)ability studies with my passion for popular or ‘pop’ culture. By the way, this was one reason I included memes at the beginning of all my posts; I want this collaboration of pop culture and (dis)ability to be felt throughout the blog’s entirety. Furthermore, I felt as though it was important to take my work in this direction, because, as Alvermann (2012) states, the “the politics of identity construction are alive and well” in classrooms, particular those that critically dissect and use popular culture artifacts (p. 7). I see that (dis)ability deserves a place in these discussions on and explorations of popular, right alongside race, gender, sexuality, class, and the other, various self-identifiers.
Works Cited
Alvermann, D. E. (2012). Is there a place for popular culture in curriculum and classroom instruction? In A. J. Eakle (Ed.), Curriculum and Instruction, Vol. 2, 214-220, 227-228. Thousand Oaks, CA: Sage.
Autism Speaks. (2014). What is autism: PDD-NOS? Autism Speaks. Retrieved July 10, 2014, from http://www.autismspeaks.org/what-autism/pdd-nos
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