How Painting My Walker Gold Changed Everyday Conversations About Disability

Since my gold-painted “Lamborghini” turned “Chariot” — dubbed Cleopatra — came on the scene, conversation with strangers has never been so pleasant, nor frequent. Whether I am in the grocery store, at an event or just walking down the street, every day without fail, people admire her gorgeous hue, check out her sleek curves or commend the creativity that gave her life. Even last night in a posh restaurant, the lady at the next table could not help but share her delight to see that we transformed a supposedly less-than-desirable assistive aid into a functional piece of art.

Living in Atlanta, the remarks are fabulously entertaining, some in a slow southern drawl “Well golly, y’all gone painted that darn thang gold?” or in spicy urban sass, “Go on girl, that’s right!” and others without the colorful articulation: “Did you do that yourself?” “How many cans of spray paint did that take?” “Do they sell those here?” “No way, it’s gold!”

This kind of attention I more than welcome. I enjoy the quick chat, share a smile with someone I’d probably never engage with otherwise, and take pride in conveying that I choose to have fun with wheels rather than letting it be a drag. But there is attention that comes with using a walker, waddling in leg braces and struggling to stroll faster than at a snail’s pace that I don’t so much care for.

How often do you find yourself staring at someone wondering, “What’s wrong with them?” “What happened to them?” feeling sympathy, “Oh poor thing;” “That’s awful;”or making assumptions like “She must have had an accident, how tragic.” When you make eye contact, do you force an awkward smile or lower your eyes, worried they might have caught you staring, then make another uncomfortable smirk before doing a double or triple take? Well let me let you in on a little secret. I see you staring; your discomfort shows all over your face and it’s OK. Just please, say “Hello!”

The side-eye peering, weird glances and not uncommon gob-smacked, jaw-on-the floor looks don’t make me feel good about myself on the odd day when my Wonder Woman attitude is not in full force. And while I know you are just innocently curious, I do wish you would take a good long look, acknowledge me politely with a nod, or at the very least mumble “Hi.”

Living with a disability has opened my world to wondrous new experiences and exchanges, each one teaching me to be more empathetic, compassionate, patient, courageous and inventive. Without a doubt, Cleopatra is my most fashionable, eye-catching and unique accessory, adding pizzazz to my spirit while making for charming chit chats. In her small way, she is my greatest advocacy tool, shattering the stigma and stereotype that living with a disability is a dismal and dreary experience. On the contrary, Cleopatra has revealed some of my most golden moments.

#princessrisingHIBM #rise4inclusion

Follow this journey at Princess Rising.

Photo by contributor.

Find this story helpful? Share it with someone you care about.

Related to Hereditary Inclusion Body Myopathy (HIBM)

Four pictures with different facial expressions of little boy with Down syndrome wearing a red shirt

To the New Moms of Kids With Down Syndrome: It Will Be OK

During my third pregnancy we found at the 20-week ultrasound we would be adding another boy to our family! Everything was going smoothly until the ultrasound technician couldn’t see something on Charlie’s heart. As a mom of two children already, staring up at the screen trying to see our baby’s heart I knew something didn’t [...]
Dizzy woman holding her head.

5 Tips to Help Make Epilepsy Medication Toxicity a Memory

By far, one of my greatest challenges living with epilepsy is keeping my medication toxicity at bay. I take varied doses four times a day, and the ones in the morning and evening are doozies. The one first thing in the a.m. (300 mg of carbamazepine and 200 mg of lamotrigine) is especially tough to [...]

What 'Mom Guilt' Says About My Chronic Pain Is Not What My Kids See

Mom guilt is a powerful thing. It can tear your heart to shreds and sit on your shoulders like a six-ton elephant. Mom guilt can make you think you’ve ruined your kid’s childhood and possibly their lives. A time of life when your children should remember as cheery smiles and rosy laughter, could be a [...]

Dear Spoonies: Chronic Illness Should Not Be a Competition of 'Who Has It Worse'

I’m probably going to step on some toes here, but this needs to be said. Being constantly sick is hard enough, but what’s even harder is having to deal with people who don’t believe you’re sick. People who need some kind of proof to believe us when we say we always feel terrible and won’t just [...]