As a Korean American adoptee woman who has several physical disabilities, I have found it hard to find a community of people that truly understand the challenges I go through. Few people get the complexities of having a serious rare disability.
I was born with mitochondria myopathy, a rare muscle condition in which my muscles fatigue quickly. As a result, I have glasses when I am reading and a wheelchair for long distances. All of this has made life challenges with doing any type of physical activity, such as gym class, field trips, or just taking a walk. I didn’t want people to think of what I couldn’t do, but rather what I could do. I guess I didn’t want to be labeled as ‘special ed/needs’ as I wanted people to see me for who I am, what I have to offer the world. In 2010, I was in a car accident resulting in dystonia, a rare movement disorder affecting the brain, causing involuntary muscle spasms similar to Parkinson’s. Because of this, I am considered to have a disability. Yes, I also had a disability when I was born; however, this sealed the deal. For a year, I was practically bed-ridden. I only was able to work a few hours a week and barely able to drive a car. For a while, I wanted to hide that I have this disability. Now, I feel like I am not able to hide my disability, nor do I want to. I live in constant spasmsing, pulling, pain, and fatigue. All I wanted was a community.
In February 2014, I found my community at Upstream Arts. The arts have always been a passion of mine, whether it has been acting, singing, dancing, guitar playing, directing, choreographing, and even writing. The arts have been an outlet for me and the one place where I don’t need accommodations. I feel accepted. The stage is my home and I feel I can hide behind characters and be who I desire. Combining my passion for teaching, working with students, and the arts, I became a teaching artist in 2010 and then a teaching artist for Upstream Arts in 2014.
At Upstream Arts, we are all about access. We believe that we can. We believe that the arts provide a way for us to communicate our feelings with others, advocate for ourselves, and take care of ourselves. We equip people with the tools they need. At Upstream, we focus on a person’s ability rather than disability. Far too often in my life, people have told me about my “can’ts” in life. They focused on what I can’t do or need to do to take care of myself. You need to take these medications. You need to make sure you eat every few hours. You will not be able to run or jump. You won’t be able to participate in sports… a laundry list of “can’ts” and “need to,” rather than focusing on what I CAN do.
Working at Upstream has opened my eyes to new ways to advocate for myself. I find that many of the tools that we teach other people are things I can take, learn, and apply for myself. At Upstream, like in life, I wear two hats. The hat of someone who has a disability that could be sitting in the seats with our students: That was me. That is me. I also wear the hat of teaching artist. It is an honor for me to foster social and communication skills with our students. I find it so rewarding.
Creating circle sculptures, writing poems, dancing the poems, painting the poems, acting in scenarios, and all the many other activities that we do have equipped me with tools that I take with me personally on my journey. For when I need to advocate for my needs, I have the tools to do so. When I need to express my thoughts, I can do so. This is my community. My home I have longed for. A company that truly understands and accepts me. A company that looks at my abilities, rather than my disabilities. As a person with a disability, I long to be accepted, to be heard, to be understood, to be wanted. As a teaching artist, I so desire to help other people use the arts as an outlet. I so wish I’d had Upstream Arts when I was in school; but I am honored to benefit from it today, both as teaching artist and a person with a disability.
Upstream Arts Teaching Artist
To purchase Nikki’s book, I Choose Hope, about her disability journey and her search to find meaning and hope in life, visit rivershorebooks.com or amazon.com. “It is memoir and self-improvement helps people see challenges as positive, hopeful aspects of life, as we never know what tomorrow may bring.”