The only thing I know is I don’t know.
I don’t remember what I thought it would be like. Did I think it would be challenging? Was I concerned about my ability to succeed? I should have been. Because I failed. Consistently.
My viewpoints editor, who uses a wheelchair, tasked me with a unique assignment. Use a wheelchair for three days. It was as simple and as life changing as that. Three days turned into 10 days. In the end, my myriad experiences resulted in one-millionth of what it must be like to live with a disability.
Day One was about exploration. Exploring my new sphere of personal space was completely unique. I was awkward and uncoordinated but motivated. I went up ramps. I attempted to open doors. I tried to challenge myself. I was going to do this.
The novelty wore off the second day.
Sooner than expected, I found myself making excuses not to sit in the chair. I can’t get into my own front or back door, they are not wheelchair accessible. I can’t reach the sink to do dishes. I can’t get my errands done quickly enough. And so I started spiraling. Rather than living in the chair, I was visiting it.
I quickly began to feel like a fake. Here I was, a trained journalist, tasked to experience and I couldn’t even do that. I was a person without a disability trying to understand something I would never truly comprehend. What seemed an interesting task began to feel daunting – impossible.
After five days of visiting the chair, I had an epiphany. I didn’t understand, and that was okay. My experiences were what they were and I had many.
Making eye contact was a frustrating experience. I constantly craned my neck to speak with people only to watch their eyes gradually grow disinterested and drift away. As a leader, I found early that I used much of my body to communicate assertiveness. This was much more difficult for me while using a chair. After spending more than eight hours in the chair, my feet began to swell and my hips were sore – physical symptoms of sitting at an angle that increased mobility but not necessarily comfort.
Everywhere I went, I felt surrounded by an invisible bubble. People seemed intent on making room for me, even going so far as to cross the street. Everything was built for people much taller than me. Help desks, library shelves, grocery stores, bathroom sinks, and stove tops, were not built for my accessibility. And the only flat surface were the faces of people intent on not staring at me – or missing me completely.
Many people were curious. They wanted to know what it was like and what I had learned. So I began to research. I spoke in detail with people who had a variety of different disabilities. Women with cancer whose entire life changed after treatment. Students with learning disabilities. Individuals who had been using a wheelchair since a very young age and men who used canes. I began to accept that I would never know what it was like, and instead, used my limited experience to spark conversation. I wanted to hear their stories.
And what I heard was awe-inspiring, heartbreaking and authentic.
Brian Gushue is a copy editor at the North County Times where I am interning. He loves comics, football and lives with cerebral palsy. During an afternoon shift at the daily, I asked him how he refers to a person with a disability. Comfortably he said, “Usually by their first name.”
Margie Reese is a philanthropist in the purest sense of the word. She loves to write and she’s battled stage-four cancer. After treatment, her body betrayed her, minimizing her mobility in a life-changing way.
“I hate having to ask for help,” she said. “I’m the one who helps. I’m not the helpee. It’s a struggle to take it one day at a time.”
Derrick Dudley is a confident and outspoken vice president with the Associated Student Organization who lives with cerebral palsy. Dudley has been a long-time advocate for individuals with disabilities. When a woman working at disability support services was particularly rude to him over the phone, he was firm.
“I hope she’s willing to say that shit to my face,” he said matter-of-factly.
Three faces, different stories, all everyday people.
If statistics posted on the enable.com website are correct, there are approximately 605 million more people living with a disability in the world that I did not speak with. That is one person in 10 worldwide. It is the largest minority group in the world consisting of every age, race, gender and economic level.
So why did I wait this long to have this dialogue? Why did I not notice missing curb cuts or people without placards or disabilities using parking spaces designated for those who need them? And how many will read these words and take the time to even consider them?
In the words of a dear friend with rheumatoid arthritis, people with disabilities are often seen as broken people. I refuse to see them that way.
I don’t know what it’s like to live with a disability. But I do know that I don’t know – and that is always the first step toward education and mindfulness.