Circa 2003., Detroit CCS / Me in Detroit, before cameras were on every phone and selfies were a thing. This is me while working on my second college degree. I’m a senior pursuing a BFA in Industrial Design. I was wearing leg braces and using a cane in this photo.

In my late teens, during highschool soccer days (unbeknownst to me), a rare and genetic muscle wasting condition began. I’m 24 here. Almost 20 years ago.

During my clunky leg brace and cane days, I exclusively wore pants or long dresses to hide them. Attitudes about disability are slowly changing, including in design and the additive devices we utilize, but back then I had no disabled role models to charter me through what was becoming a remarkable journey.

As a disabled person, so much of our mental energy is spent on trying to hide the obvious. For example, I wouldn’t let anyone see me take my leg braces off. If I was in a relationship, I’d make sure to de-brace when he wasn’t looking and would throw them under his bed or couch before anything intimate could happen. When you wear leg braces you wear chunky shoes or sandals to accommodate, making you feel unwieldy and unsexy.

If I pulled up to a location, and there was a cute guy next to me, I’d wait to get out of my car after he left because I was embarrassed by my limp and the amount of effort and lack of grace it took to get myself out of the car.

I chose a cane I could fold up and hide in my bookbag because I didn’t want my disability to be obvious. It was kind of a fun cane because when I did take it out of my bag it’d be like nunchucks that magically and quickly snapped into a cane. But people see you’re disabled, you are judged immediately. Here I am, trying to be taken seriously in the academic and career world, which meant hiding as much of myself as I could.

As my disease progressed, I developed a limp (Jason called it “the wiggle”). Walking was increasingly a struggle. It felt like dragging sand bags, but I’d have to simultaneously look fine and keep up, while giving all my mental and physical energy on every single step, including scanning the path to avoid a fall. Add in having a conversation while walking and you’ve got a challenge as you try to appear completely cool, but on the inside the amount of physical inertia and focus it takes to move your body is all consuming.

When I got my first design job in Los Angeles, one of my first friends invited me to get Cuban food. By this time, walking took an inordinate effort. I avoided a possible invite in earlier days because I was trying to figure out how to walk in more challenging or unknown areas without making my disability obvious. I knew he had a red pickup truck (parked on an incline) and inside my head I was screaming with the list of questions or concerns all disabled people have: “How do I do (fill in the blank) and still look ‘normal’?”

How do I get myself in his truck without a catastrophe or falling, while maintaining a cool composure in front of my new coworker so I don’t look incapable?

When you have a disability you’re forced to compensate a lot, including even in personality. I always had a sense of humor, but I probably developed the humor I have now as a mechanism to make others feel at ease because I felt forced to disguise my limping, disability and how much I was truly struggling with every single step.

This is only a flash of what disabled people have to think about, but it basically entails constantly hiding who you are to put others at ease, so they can see your humanity and worth. The problem is, you can’t hide an obvious physical disability, and hiding gets tiring.

I’ve been sharing more about body image and disability because I know how I felt when I had no (disabled) example. I had a childhood and teen years full of feeling ugly and too different. Now I was disabled and had to take myself on a journey to see myself.

I’ve always been self assured, especially when it comes to standing up for what I believe in, but not always confident. Confidence isn’t always easy and like an ocean it comes in waves. Some days we feel like a goddess and other days lower than the gum on the bottom of our shoe. But it’s about resetting our own lens and truly seeing the self; a systematic collection of psychological, social, experience, neural and molecular identity. The core of who we are, where true awe inspiring beauty lies. The self is more than the physical. See the whole self, and don’t hide. #kamswheelstravel #throwback

For more ♿️ travels, mini memoirs, disability and accessibility musings @ Instagram.com/kamredlawsk