I was three years old when my two youngest sisters were born, one of my earliest recollections is staying with my grandparents playing with a toy kitchen set while my mom was at the hospital. I remember after my mom and dad came home from the hospital and I held my sisters in my arms. From a young age I recognized that one of my sisters was different in the way she interacted with the world. While my other sister Eliza began to socialize with her surroundings and speak phrases my parents would understand, my sister Eve displayed different behavior and my family began to notice that she was unique. It was during this time that my sister was clinically diagnosed with nonverbal autism. To others Nonverbal would come across as a pervasive silence particularly in our society that is built off the ability to communicate with our environment and be understood. Although from my perspective growing up with my sister she lived a life of colorful expression that wasn’t defined by her diagnosis.
Many people could not understand my sister as she would utter certain words and utilize nonverbal gestures or behaviors to communicate. To any other person it would sound as though she was speaking another language or uttering gibberish. But from a young age I would recognize these terms as my sister’s needs with clear distinctions to when she was thirsty, hungry, upset, or tired. Growing up there were numerous times in which my sister’s disability made her the subject of ridicule from peers who did not understand why my sister was different. One day I was going on a walk with my sister in our neighborhood and a group of younger girls our age from the neighborhood huddled together and whispered “isn’t that the girl who’s disabled” as they gave each other a grimacing look and walked away. My stomach dropped at this moment as I could not understand why other kids my age would act this way towards my sister as though she was some entity they should stay away from. Even as a girl in elementary school I was aware of this lack of understanding and often ableism out of ignorance from others. I felt that if those people who held judgment could see my sister the way I did they would understand that she is not too different from themselves.
When my family would have therapists or social workers come to our house to try to work with my sister I would often explain to them what my sister meant by the expressions she made. This was due to the way my sister communicated which was not easily understood by those who did not live alongside her. There was a certain literacy to communicating with my sister as I learned to phrase my words in a way that she would understand. I helped my mom cut out cue cards with different wants and needs, putting velcro on the back to pin to a board. This way my sister was able to further signal for things she may not be able to put into words.
While my sister was unable to write and struggled to express herself in the way most of us would, I found other ways in which I was able to communicate and establish a bond with her. My sister always had an interest in games and puzzles. In particular we would often start these mechanicals puzzles together with hundreds of pieces and my sister would be able to finish them quicker than I could when we would work on them together. My sister also loved music as I would often play songs for her and she would sway to the music and smile. She liked to go swimming in the summer and go on drives with our family with the windows rolled down and the breeze flowing through our hair. I often wished I could see into the mind of my sister to understand how she felt and how she saw the world around her. However, I felt as though through the ways she could express herself was a glimpse into who she was. While my sister had a limited vocabulary, the way she interacted with me helped me to understand various facets of communication and how we can connect to one another nonverbally.
When I was going through grade school I struggled a lot with my self confidence. I felt guilt and often blamed myself for why I couldn’t do more to help my sister. I sometimes felt as though despite my efforts I was unable to make a difference. However, the more I witnessed my sister’s resilience despite her struggles to communicate it in turn strengthened me as a person. When I was in high school I did a presentation on understanding individuals on the autism spectrum and advocating for better inclusivity in our school system, workplaces, and communities. While to my peers this presentation may have seemed as though I was simply advocating for a topic I was passionate about, to me it was a defining moment In which I was able to use my voice for my sister. As I became more confident in my abilities I began to become more involved in my community as I started to volunteer at local parks in northern Virginia with a focus on working to help preserve the natural habitat and help clean up our parks. In my later years in high school I attended multiple environmentalist marches to Washington D.C to raise awareness about climate change and growing concerns of human impact on our environment.
My sister is the person who taught me how to be brave and gave me a voice to be more proactive in my community. When I entered college I decided I wanted to major in Political Science because I knew that I wanted to be involved in some way with helping to advocate and improve policies for those who are underrepresented. I plan to apply to intern on Capitol Hill to further pursue these goals and continue my activism for others. The literacy my sister gave me is something that prevails over all words, which is the power of human connection, the way I can make others feel heard and seen despite our differences.
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