SMA wheelchair
Spinal muscular atrophy Caregiver

Erika R.

Mom

SMA and staring

Anyone with a disability can tell you that staring comes with the territory. This was a lesson we learned soon after we were told that our 20-month-old son, Logan, had Type II SMA. Before we received this life-changing diagnosis, the only looks we’d get were smiles in response to his dimpled cheeks and chubby legs. But a year later, when we added a wheelchair to the mix, the stares—and some smiles—took on new and complex meanings, and so did our feelings about them.

07/2017

Our first experience with staring came on the day we ventured out of the safety of our nest with our older daughter and then 2-year-old son. Earlier that month, we’d taken delivery of a tiny, dark green wheelchair. Our son Logan named it Jay-Jay and immediately discovered he could use his wheels to explore and zoom around the house with his big sister. That day, our pediatrician called to see how we were adjusting to life with SMA and the new wheelchair.

I admitted that we hadn’t left the house, and that I was nervous and afraid of venturing out. What held me back? My anticipation of probing stares and pitiful looks along with my desire to protect my child from all that I imagined might come: the bullies and diminished expectations. “Take one loop around the lake,” she said. “That’s it. Do it.” So we did. And yes, we received some looks, but mostly we focused on his joy—which was palpable. How he loved wheeling himself and being pushed around the lake! Wheelchair or not, he was still his adorable self, enjoying a day outside with his family.

So, what is it about staring? Like it or not, it’s part of life for anyone with a disability and certainly for someone with SMA. We’ve all been guilty of staring at one time or another. Human beings stare for many reasons: we stare out of admiration, we stare out of shock, out of curiosity and fear. It’s a natural response to something novel, or different. But this intellectual rationalization didn’t protect me from the hard and complicated feelings that followed when my son became the focus of the curiosity of strangers.

Not everyone experiences staring the way I do. Even my husband’s reactions differ from mine from time to time, but these are some of my concerns with staring. One is the loss of anonymity. It means that whether we’re out for a simple family dinner, or dashing to the grocery store for bread, our lives are open to the public for questions, judgment, and/or pity. This loss of privacy is jarring for someone like me. I love my privacy and want my son to be treated with dignity and respected just like anyone else. Staring feels invasive, no matter the motivations of the person doing it.

Being the object of staring can make for some strange and exciting life experiences. I feel like I can read minds. On some days the interactions can be interesting or downright amusing. But on others, the burden of answering the same questions again and again or explaining personal information to strangers can be awkward and annoying. It takes something out of a person to be the recipient of looks of pity, or confusion when people gape at your child and seemingly wonder, “Why is that kid in a wheelchair?” 

So what to do? 

1: Accept that staring is a part of the new reality. It happens! There will be times when people say things that are awkward and silly, like “I wish I had one of those” or “Good driver.” At times, the comments may be rude, such as “What’s wrong with him?” The answer, of course, is “absolutely nothing.” Then there will be other times when you meet the kindest people, or make a connection because someone felt the need to share something unexpectedly personal with you.

2: Accept that you are an ambassador from the world of disability. This is a tremendous opportunity to change hearts and minds about disability, as well as educate about SMA. These seemingly meaningless interactions have the potential to leave someone who may have never spoken to a person with a disability with a good experience. In the big picture, facing down the ignorance and fear of disability and highlighting the inherent humanity within us all are worthy challenges to face.

My son, now 10 years old, is just beginning to find his way in the world. No doubt, there will be obstacles to his full inclusion. But I hope that his experiences will help him claim his place in the world and demand the respect he deserves. I wish him, and everyone else living with SMA, the best for leading full and exciting lives—whatever shape they may take!

Other posts by Erika

Into the clearing: emerging from the fog of diagnosis

By far the greatest motivator for pulling us out of the fog and fear and sadness was the tiny little boy smiling and sitting before us in his new green wheelchair, named Jay-Jay. What could we do other than explore the world he is so eager and grateful to be a part of?

READ MORE