Leading with the power of our positive stories
Last week I had the honor of speaking at and participating in the 39th annual SOFT Conference. SOFT, which stands for Support Organization for Trisomy 18, 13, and Related Disorders, is a nonprofit…
Caring Together – Connie Chandler
Connie Chandler is the director of family engagement at the nonprofit organization We Carry Kevan. She grew up in the foothills of North Carolina but now owns a home and lives in Fort Wayne, Indiana. She was diagnosed with SMA type 2 when she was 18 months old. She believes the best way to receive great care is to give great care to those around her. Through her column, she hopes to share funny and sweet stories about her friendships with her caregivers and the ways they are growing together.
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Traveling with SMA is better with people I love
I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and…
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There’s nothing like finding a community where we belong
Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged…
Grateful for sentimental souvenirs and friends who stick around
As I unpacked my suitcase after a trip to England, I found a little paper bag that held smooth pebbles, bird feathers, a snail shell, and a piece of sea glass — things that…
How empathy and generosity can keep us fully charged
I write a lot about my able-bodied friends and the ways they care for me. But sometimes the person who can offer the best support and help is disabled as much, if not more,…
How I make wheelchair doughnuts and young friends
“Connie, can we make some doughnuts?” Two-year-old Eden, with her blond pigtails and soulful blue eyes, asks me this question on a weekly basis. “Of course, sweet girl,” I reply and let her lead…
Phase 1 of ‘Connie Care’ provides an opportunity to connect with others
“OK, so just pick up my arm and rest my elbow on the table right here, with my hand up toward my face. That’s right. Now do the same thing with my other arm.
Shower confessional: How vulnerability can deepen friendship
Confession: I do not enjoy taking showers. Please don’t misunderstand me; I absolutely love the feel of hot water on my skin, the sweet fragrance of scented soaps, the soothing comfort of a shampooed…
Why attitude is important when it comes to accessibility
“Umm, bunk beds?” My mom and I stopped in our tracks, backpacks and pillows in tow, peering into the room where we were supposed to sleep during a fun and relaxing weekend away. Needless…
Letting kids ask questions leads to greater understanding
With a fresh cup of coffee balanced on my knee, I quickly scanned my church’s cafe area for a place to land where I could have a supportive tabletop. The only vacant spot at…
Learning how to ask strangers for help benefits everyone
One of my favorite pastimes is cruising the sidewalks of our downtown area all by myself. I have a wheelchair-accessible van, but I need my friends to drive it, which means I rarely go…
Introducing ‘Caring Together’: My journey with friendship caregivers
In 2001, I was a bright-eyed college freshman, ready to change the world with my bleached highlights, cargo pants, and purple-framed power wheelchair. I felt like I had already achieved and overcome so many…
