When a Man Mocked the Way I Walk at the Grocery Store

I remember the first time I “saw myself” wobbling.

It was four years ago, on screen actually, in a UNICEF Television video about my work with children with disabilities in Haiti. We were in the UNICEF Haiti Country Office with the producer, pre-screening the piece for the first time. While everyone else in the room was in tears, profoundly moved by the touching message, I was mortified at the sight of myself, so much so that I gasped, “Is that what I really look like when I walk?”

My colleagues had no idea what all the fuss was about. That is how they had first met me and knew me, with weakened legs that twisted out and hips that jolted in a pronounced gait, stumbling on two canes and legs braces. Their surprise was not unfounded. I had never given much attention to my new found weakened state; on the contrary, I was already known as an outspoken disability rights advocate, who did not hesitate to voyage to some of the world’s most difficult conditions if it meant continuing my humanitarian work.

But at this moment, seeing the video was difficult for me.

It was the first time I saw what I looked liked when I walked, since being diagnosed five years earlier with hereditary inclusion body myopathy (HIBM), a progressive muscle wasting disease.

While the video went onto air, receiving brilliant reviews worldwide, I realized for the first time, that others see me quite differently than I see myself — sometimes for the better and other times for the worse.

Two weeks ago, at the local grocery store, an older man approached me from behind, tapped me on the shoulder and in the most animated voice asked, “Are you OK or is your walk the latest trend?”

Just as I took my next step, this total stranger began to impersonate my stride, kicking his feet out lopsided, thrusting his hips forward more than a jubilant belly dancer and flaring his arms up like a marionette whose puppet master has lost control of the strings.

Astonished, all I could do was smile and look amused at his ridiculous prancing. Before he thoughtlessly continued on his way, he exclaimed, “I don’t want to not be up with the times,” and bid me farewell. I politely wished him a good day, fiercely clenching my hands to my walker, shaking my head to shake off the flabbergasted trance, so as not to stumble over my own feet and land flat on my face, which can happen when I am not paying attention.

Stunned, in silence, I strolled on to find my husband, who eventually rescued me out of an aisle where he found me roaming aimlessly with a dazed and confused look of a bullied child who can’t seem to find her way back to class.

“You know what a man just did to me?” My protective John was less than amused as I explained the unbelievable scenario. However, it was my disturbed state that worried him most.

“Why would someone do that to me?” I mumbled repeatedly. It did not make sense. Was he trying to make me feel better about all the people staring at me in the grocery store, a daily occurrence every time I step out of my house? Did he assume I was drowning in all the stares and need to be saved? Strangers stare so blatantly and shamelessly – often asking, loud enough for me to hear, “What’s wrong with her?” My friends or family by my side then feel the need to clobber them, saying, “Oh my goodness, why is everyone staring at you? How do you handle it? What’s their problem?”

Of course, it’s not comfortable in the least, but I have had to learn to not let it bother me. I either just keep my head down or I smile at them in an effort to break the ice, hopefully communicating telepathically that no, I am not an alien from outer space that might eat them.

Did the man in the grocery store feel the need to save me from the onslaught of stares? I did not want to believe that this unknown person wanted to hurt my feelings, acted out of spite or was trying to be malicious, ridicule me or put me down. Now that would just be cruel. But, maybe he was just a grown up bully. Who knows. For better or for worse, all that mattered was how I saw and felt about myself.

For the next hour as we finished our shopping and headed home, I rambled on and on, frowning, concerned, bewildered, fixated on trying to understand this stranger’s motive, but more unnerving, trying to make sense of how I felt about it.

To be honest, I think my feelings were hurt. Regardless of his intentions, I felt violated at my most vulnerable, a state I unfortunately cannot choose to hide from the world. I didn’t like that this person I did not know and had never seen in my life, had imposed on me something so personal, with no invitation whatsoever to engage.

Now don’t get me wrong, I am the first person to make a joke about my disability, wobbly bits, and sexy strut. I gleefully announce that if the wheelchair does come one day, I have vowed to bring an entirely new definition to “sitting pretty” by wearing four-inch glitter gold stiletto high heels every day!

In all seriousness, if I had one wish for that man, it would be to walk a day in my shoes. Not to deal with the relentless stares or struggles, but for the glory that is finding strength and courage in my most vulnerable adversity, and valuing in myself that which really matters.

We will never know his true motives and I now do look at the incident with some humor – he did look pretty ridiculous flopping around as he did. All I know for certain is that for everything this physical struggle badgers me with daily, the psychological and emotional battle is tenfold. But I choose to rise to the challenge!

Will you rise with me?

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