My husband and I with our son at his 2019 High School Senior Night
My first column! This appeared in the November 2022 Mirror Moms page. I introduced myself and gave my readers a glimpse of what I had in store for them.
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I’m excited to welcome you to my disability awareness column. My name is Julie Conner, and I have a neuromuscular disease called Primary Lateral Sclerosis or PLS for short. Along with being a wife and a mom, I’m a disability advocate, a wheelchair user, and a fiction writer who writes without her hands. I’d like to create a deeper understanding of all disabilities through conversations focused on kindness, dignity, and respect. I’ll be discussing what I’ve experienced with my disability, but my personal narrative may differ from others. I thought I’d start by telling one of my favorite stories about how I answer questions about PLS.
Years ago, my husband’s family had a reunion at his aunt and uncle’s home on the shore of Lake Pymatuning. We stayed in a guest suite on their basement level, one made accessible by either rolling around the outside of the house or by my husband carrying me up and down the inside staircase.
The first morning we were there for breakfast, he carried me up the steps and placed me in my wheelchair—all in front of his four-year-old niece who was sitting at a table across the room, drawing. My husband left to go retrieve my wheelchair feet, and she danced over to me, a sheet of paper in one tiny hand and a crayon in the other.
Tilting her head to the side, her eyes laser-focused on my shins, she asked, “What’s wrong?” in a soft, sweet voice.
Smiling, I answered, “My legs don’t work.”
She nodded once, then turned and danced back to the table with a musical, “Okay,” floating over her shoulder.
It was all the information she needed.
I’d answered simply. She’d understood. We were now friends.
My interaction with her has become the absolute gold standard whenever I field questions about my disability to children under 8. The key is associating what they know and understand to what they see in kid-friendly terms.
For everyone older, I explain PLS is like talking to someone on a cell phone with spotty service. The brain sends commands through my satellite-like nerves, but most signals scatter and break up before connecting to the targeted muscles. I want to walk and use my hands, but there aren’t enough connections to make everything work.
I’ve always been open about PLS, why I’m in a wheelchair, why my hands do not work well, and I don’t mind if people ask me questions. When we can learn about the experiences of others, our world opens up. Gauging a person’s body language and their desire to make eye contact is a great way to judge if they’re willing to answer questions from children, as well as other adults.
Over the next few columns, I’ll be discussing what I’ve experienced with my disability on a variety of topics. It hasn’t always been easy or gone exactly as I’d expected—from the absolute hysterical to the shockingly surprising—but whatever obstacles life has thrown in my path, I’ve managed to wheel around, through, or over them. My goal is to inspire you or a loved one to do the same, and I hope you’ll join me on this journey.
Please feel free to contact me at my website with any questions, and browse through my expanding information on everything that’s wheelchair and accessibility-friendly.
Until next time, let’s keep rolling forward!
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