StoryJan 10, 2019

Sydney Chasteen: Growing up and Becoming Independent

I have accomplished many things. I graduated high school and attended a university several hours away from home.

I don’t have many memories of growing up wishing I didn’t have Spina Bifida. I don’t remember feeling like the ways in which I was different from my friends was bad or that I was made wrong. I’m not saying these thoughts never crossed my mind; just that they didn’t happen often enough to leave an impact. Spina Bifida has always been something that was just part of me. I’ve never known anything else. I’m me; this is how I am.


I think this mindset had a lot to do with my ability and desire growing up to self-advocate. I knew I had needs my classmates didn’t. I learned to not be shy about expressing those needs and making sure they were met. I never saw it as being out of the ordinary. It was something that needed to happen if I was going to be as independent as I wanted to be. Thankfully, I have always had an extensive support group of family and medical/educational professionals who have helped and supported me in numerous ways.


That support in many ways gave me the confidence to live my day-to-day and adapt however necessary to do what I needed to do. This has included learning how to do things, especially related to self-care, in “alternative” ways. But alternative isn’t really accurate. I do things “my” way. “My” way has included, among other tactics, rolling, scooting, crawling and bending in ridiculous ways just to do something myself. I have also been known to use mobility aids in ways not necessarily within the definition of their intended use.

Speaking of mobility aids, my wheelchair is without a doubt my most important tool for remaining independent. Becoming a full time wheelchair user made me so much more self-sufficient than I was ever able to be using other mobility aids. My wheelchair has allowed me to do things that I honestly don’t think I could have otherwise. It’s freedom to live my life my way.


Because of that freedom, along with the support from my family, and my desire to be independent on my own terms and in control of my own goals, I have accomplished many things. I graduated high school and attended a university several hours away from home. While in college I was a member and later president of the disability advocacy group on campus.

Continued growth and understanding of the disability experience and my lifelong experience as a disabled person have served to enforce what on some level I have always known. Disability is not the barrier; ableism in society is the barrier. Disability is merely a state of existence and a fact of life for many people, including myself. I have done so much with my life: graduated college, gotten married and worked several jobs. I have done so much with my life: graduated college, gotten married and worked several jobs.

Most recently, I have been working to promote my blog where I write about my opinions on disability issues and experiences with Spina Bifida. All of this was achieved in the face of a society that often tells people like me that we shouldn’t even try because we won’t be able to do it. But we have to try because the more of us there are out here achieving our goals, the faster we will impact the societal barriers built to keep us out.” –Sydney Chasteen

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