Growing up, we were very different. She was outgoing and extraverted, I was shy and introverted. She was more expressive, while I was more intense and analytical. She loved to move and was the first to jump up and interact with her surroundings, while I was cautious, detail-oriented and reserved. That is what seems so ironic about siblings, the person that you are genetically most similar to, you also have many undeniable differences.
As a child, I sensed many of our contrasting traits. But these characteristics did not affect our connection to each other. Instead, I idolized my sister’s exuberant, social nature. She was five years older; she was confident and likable. She would initiate conversation where I froze up, and when we were in new situations without the guidance of our parents, I clung to her desperately because I knew I would be okay when I had her. We made a great team because her strengths made up for my weaknesses and vice versa. Whether it was setting up a tea party in our tree house, creating “bubble land” in our front yard, managing doll daycare, or putting on dance shows for my parents, we were able to use both of our strengths to our advantage. As a young child, I subconsciously recognized the differences in our personalities, but I didn’t notice that my sister had a developmental disability.
Some may say this is the lack of knowledge and the naivety of youth. I tend to disagree. I think it is a mind that has not been impacted by barriers created by society, by the stereotyping of a homogenous culture, by the isolation of people who differ from the social “norms”, by the stigmas of the often ill-educated and hateful language that we communicate with, by a world that says they can’t. I believe that the exposure to this is what caused me to notice the curious stares, the commentary about the little school bus and the “special” activities my sister was a part of. I didn’t think my sister was challenged or difficult, and I felt uncomfortable and confused when I was consistently being described as patient, an angel, and such a sweetheart for simply being a part of my family.
I can remember sitting in our basement with hundreds of pieces of candy, our child sized chalkboard and my 2nd grade double column addition homework. Feeling uncertain as to why my sister didn’t know how to do double column addition as a middle schooler, I made it my mission to teach her. In my mind this was a simple task that I was determined to complete. She was my big sister, and she was wiser, she was smarter, she could do it, I just had to show her how.
We drew pictures, we counted candies, started from simple to complex and over and over. Why couldn’t she understand? What was I doing wrong? What could I do to make her learn? I was insistent on my goal so we kept repeating each strategy again and again until we were both yelling and frustrated. My sister sat with her head down staring at our array of supplies. She looked at me with discouraged eyes; she had failed. She stood up abruptly from our table, and walked away. At that moment, I was heartbroken. I wanted to be there for her, to help her, to teach her as she had often taught me, but I had failed.
This was the moment that I remember realizing that my sister was different, and there was nothing that I could do to change that. After a conversation with my mother, my realization was validated. I was confused about many things, and frankly I don’t think I could have or needed to understand all of the facets that our sibling relationship entailed at eight years old. The one thing that I did know for sure was that I didn’t love her any less.
As I advanced into the jungle of the preteen years, I found that my sister looked to me more for leadership, that she needed more help from my mom than I did, and our milestones were frequently different. I often felt embarrassed talking about her to my friends whose sixteen-year-old sisters were learning to drive and dancing on the varsity dance team. I feared what other people thought of her, that they wouldn’t understand her, that they would make fun of her, view her as incapable, and put her down- I feared this the most.
Growing up with my sister, I have always felt things deeply. Whether it be guilt, shame, sadness, joy, compassion, humility, anger, the list could continue for pages, but it always culminates with passion. I listen to my sister explain her job to our family friends, watch as she accepts the “Rising Star” award within her Special Recreation Association, or go to brunch together just us two, and I notice her expression of pride and independence. In these moments I feel she is forging through society’s barriers and proving that she can.
Fast forwarding to the present, growing up (and some college classes) has taught me to apply this passion that developed from my relationship with my sister to the Disability Community as a whole. I continue onward working toward a society that values every person as important. I work daily to create small changes in my community, and I have to constantly remind myself that these changes will someday lead to a world that is free of barriers and includes individuals with differences of all kinds. Sometimes I think to myself, “If only every person could grow up the way I did.” I wish everyone could have a role model, a teacher, a friend, a student, a person, a sister like mine to show them all that life has to offer when you color outside the lines, take the time to learn in an innovative way, communicate through a medium other than words, move with an interesting gait, or express yourself in a manner that is completely distinct to you. Instead of the world perceiving any of these things as a deficiency, an issue, a problem or something to be “helped” or “fixed”, we will only see it as a variation that makes each person uniquely human.
–Written by Sierra Shum, edited by KIT staff.
Sierra Shum is a recent graduate of Miami University in Ohio. She received a B.F.A in Painting with a minor in Disability Studies. Sierra has been involved in many organizations throughout her life with the continual focus to use creativity to foster inclusive environments for individuals with disabilities. Currently, Sierra serves as Outreach Coordinator at The Center for Enriched Living in the North Suburbs of Chicago. The Center provides social and recreational opportunities for teens, adults and seniors with developmental disabilities. Sierra plans to continue her activism through education, creativity and sharing her experiences with the community.
In this post, Sierra writes about her sister Chelsea. Chelsea is 28 years old and has two jobs in the Northwest Suburbs of Chicago. Chelsea is very active in her community and participates in a variety of different programs through Northern Illinois Special Recreation Association. Chelsea enjoys singing in choir, acting on stage in her theater productions and meeting with her church group each Tuesday. She continues to show others how truly wonderful it is to accept and respect people for their differences.
Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.