Hi. I am Zaiden Sowle and I am the Content Production Intern at The Darkest Horse. I am sharing my story of disability in recognition of National Disability Employment Awareness Month (NDEAM). This is Part 1 in a three-part series. In Part 1, I talk about how I move through the world. In Part 2, I share how I am navigating my career. And in Part 3, I share what COVID-19 taught me about accessibility. Part 2 of the series will be released on October 19th.
PART 1: HOW I MOVE THROUGH THE WORLD
Hi. My name is Zaiden Sowle, and I am disabled. Phew, I said it.
I didn’t eat, speak, or walk until I was about three years old. Yes, I was on a feeding tube until around my third birthday when I finally learned to eat. My early childhood experiences were different; American Sign Language was my first language, and in kindergarten, I was diagnosed with low vision – I have worn thick glasses ever since! A genetic mutation I have called Noonan Syndrome caused developmental delays — a combination of physical and cognitive — throughout my childhood. As time went on, I continued to struggle with additional disabilities that were a result of living with Noonan: poor fine motor control, low vision and high astigmatism (requiring thick glasses ever since), and continuing cognitive delays; resulting in repeating preschool.
As the years went by, I learned creative ways to accommodate my various disabilities. However, there was always a part of me that felt alone in the world, isolated from everyone else in my life. Although I had a group of close friends and an extremely supportive and loving family (I love you mom and dad 😊❤️), a part of me was lonely.
My feelings of isolation and loneliness had nothing to do with my friends or family. It was because until high school, I had been the only person I’ve ever known who has had the unique disabilities, difficulties, and experiences that I had. So, you could only imagine how excited I was to get to know other people with disabilities during high school. For what seemed like the first time in my life, I wasn’t alone, isolated, or unique!!!
It’s only recently that I have begun to use the term, and identify as, “disabled” to describe the many difficulties I have while navigating the world. I had always shied away from using the term disabled, because I worried that other people with disabilities would think I’m not “really” or “actually” disabled and take offense to me adopting it for myself. However, a recent conversation with a friend changed my entire viewpoint on the issue, when we were talking about this a month or two ago. This friend helped me to realize that I am, in fact, disabled and that knowing that for myself is enough to use the term as a way to identify.
According to the CDC, approximately 25.7% of adult Americans report living with at least one disability. In fact, most people will face some level of disability in their lifetime – temporary or permanent, mental or physical. Growing old comes with its own set of disabilities. That means you – yes, you, reader – are going to be disabled at some point in your life if you live long enough.
Some people are born with disabilities, but anyone can develop a disability at any point in their life. I happen to be an example of both! Just as I was feeling confident in my ability to navigate the world as a disabled person, I developed a few more disabilities, as the result of a malignant brain tumor. This tumor, discovered in May 2017, caused me to take a year off from my college studies to recover and cope with these additional disabilities. During this time away from school: was in physical therapy to relearn how to walk, occupational therapy to relearn how to control my hands, and speech therapy to relearn how to help regain speech abilities. Although I did eventually relearn how to walk, use my hands, and speech abilities; there were other permanent disabilities that I inherited from the brain tumor: I have hearing loss in both ears (requiring hearing aids), left side fine motor control loss, and loss of peripheral vision in the left side of both eyes.
Today, I’ve learned ways to accommodate all of my disabilities, new and old, and couldn’t be more proud to call myself disabled.
REFLECTIONS + RESOURCES:
- What is one thing you will take with you/that you learned after reading my story? How has my story changed your view on disabilities and disabled people? What are other thoughts/questions you have?
- Living, Learning, and Working with a Disability (National Association of Colleges and Employers)
- It’s Perfectly OK To Call A Disabled Person ‘Disabled,’ And Here’s Why (HuffPost)
- We Need To Rethink The Penalties And Rewards Of Identifying As “Disabled” (Forbes)
In the next article, I will share how I am navigating my career as a disabled person. Talk to you soon.
