When Mobility Aids Become Stylish Accessories, the True You Shines Through

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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People sometimes say their cars are an extension of their personality: sporty, sexy, rugged, classy, adventurous — any of the descriptors used in commercials.

I take that idea a bit further. A true extension of my personality, my car is a little ridiculous and a lot of fun, and she wears her heart on her sleeve, with decals showing peace, hope, butterflies, and sarcoidosis awareness.

Everywhere I go, people smile, flash me a thumbs-up or a peace sign, and tell me how much they love my car. To me, that’s mission accomplished. If I can bring a smile to someone’s face, I feel like I’ve done my job.

mobility aids | Sarcoidosis News | A two-photo collage shows different angles of the back of Kerry's lime green hatchback with purple decals

Kerry’s car, full of personality. (Photos by Kerry Wong)

In a similar fashion, we dress to represent aspects of our personalities and mood. We choose clothing and accessories to reflect how we feel about ourselves and project how we want to be seen. That can be even more necessary as we become disabled by sarcoidosis or another condition. It’s easy to feel like we’re not ourselves anymore when we can no longer do the things we did previously.

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When that happens, many of us retreat into ourselves. We just want to blend in and don’t want to call attention to ourselves or our problems. This may be due to internalized ableism, ableism we see all around us, or our feelings about the very real loss that we’re experiencing. But what we’re really doing here is reinforcing negative sentiments and making ourselves feel worse.

I’ve pretty much gone in the opposite direction. It started when I realized I’d need to use a cane, my first visible sign of illness and disability. I fought it for a while, struggling and suffering with every step before I could admit to myself that I needed help. But once I accepted that fact, I decided that if I needed a cane, I would tie it up with hippie scarves, like a Steven Tyler microphone. I changed scarves daily to match my outfits.

That little touch changed the way people looked at me and the way I saw myself. Rather than attracting pity for the poor, disabled woman, I was the one with the cool cane. People smiled at the style and laughed at the explanation. That sometimes led to a friendly conversation, while other times it was just a moment in passing. Either way, it was a positive interaction.

Unfortunately, the cane wasn’t enough for long distances. I resisted even more, but ultimately conceded. I rented a mobility scooter for my next advocacy day on Capitol Hill in Washington, D.C. It didn’t take long to see what a smart move that was. I saw how much some of the others were struggling with the distance and the hills, and I knew that I would’ve been suffering just as much without the scooter.

I rented a scooter again for my next vacation and saw how much I needed it. But I also saw how people looked at me. There was pity in their eyes, as well as disdain and annoyance that I took up more space on the path. “What’s wrong with you?” they’d ask, which fed into my own insecurities and made me feel “less than” a healthy, abled person.

When my disability case was approved, a mobility scooter was one of the first things I bought. After those recent trips, I knew I needed one, but I also saw how inconsistent, unreliable, and inconvenient a rental could be. I did a lot of research and eventually found one that folded up with a remote and could be placed in the trunk of a car. It was everything I needed, but still not something I wanted.

I decided that, like my car, my scooter should reflect my hippie spirit. I ordered decals portraying peace, love, and sarcoidosis awareness. As expected, it completely changed the way people responded to me. Instead of pity and contempt, I got joy and congeniality. I got less “What’s wrong?” and more “Nice ride.”

mobility aids | Sarcoidosis News | A photo collage shows Kerry on a decorated scooter; next, with her decal-covered air cast; finally, with a decal-covered knee scooter

Kerry with her accessorized mobility accessories. (Photo by Kerry Wong)

When I broke my foot last year, I had to get new supportive equipment. My doctor ordered an orthopedic boot and a knee walker. To go along with that, I ordered a package of hippie stickers that I could use to decorate both. I’ve been told I’ll soon need a hip replacement, and I’ve already started looking into walkers with purple bars and flower power seat covers.

I do this for the joyous response it invites, but really it’s more for me. Accessorizing my accessories helps me focus on the fun, rather than the loss; on the style, not the stigma; and on the reflection of my personality. This is who I am. I may be disabled by sarcoidosis and arthritis, but that doesn’t mean I can’t still be me.


Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

Jackie treanor avatar

Jackie treanor

Thank you for offering insights into how to approach changes in mobility with grace and flair. I.m shopping for eye patches…same philosophy!

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Yes, Jackie! I'm sorry you need to get one, but it's definitely something you can stylize. From the simple black patch, you can go pirate style (you might have to get a bird for your shoulder, though, so maybe not so simple). If you know anyone artistic, you can even customize it! When I was little, someone I knew had to wear an eye patch, so her father drew pictures on flesh-toned patches ... once, he even drew an eye! If not so creative, I'm sure there are more options now than 40 years ago. Best of luck with finding the one that's right for you!
~🦋

Reply
kimberly reese avatar

kimberly reese

You have a very good outlet with Sarcoidious, It is important to be strong and postive

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you, Kimberly! And together, we can help keep each other smiling and supported!
~🦋

Reply
Anthony Barber avatar

Anthony Barber

I agree 100% with making it your own, Me personally....I'm the outdoors type. And when PT offered up the grey aluminum cane to walk with I balked at it. I knew already I had a nice set of Trekking Poles at home that I used on hikes for a while now. They are my "crutch" so to speak. It's still obvious what it is and why I'm using it....but it fits my personality better.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Anthony, I LOVE THAT! Definitely a way to get the support that you need in the way that feels more "you." Awesome!
~🦋

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