by Meg Zucker
Whenever I leave home, I am constantly subjected to acts of kindness. I know that’s supposed to be a good thing. But throughout my life, it’s been more complicated. Many strangers who encounter me and my family simply can’t help themselves. On any given day I might be asked if I need help bagging my groceries, signing a receipt or even unbuttoning my pants before I enter a stall in a public restroom.
I was born with a rare genetic condition called ectrodactyly that I passed on to two of our three children. I have one finger on each hand, shortened forearms and one toe on each tiny stump of a foot. Our sons Ethan and Charlie — but not their sister, Savanna — inherited their own version of it. Together the three of us have a total of 18 digits. Go figure.
These public interactions, while often mundane and well-meaning, have undeniably impacted my sense of self. But having our sons helped shift my view of what it means to live with something society considers atypical.
Growing up I was naturally gregarious and social, yet no one seemed to get me. Strangers would stare, so I recoiled. Most interactions otherwise were either offers of help or glances filled with pity. Despite my lot in life, my parents resisted fear and raised me to pursue and succeed at my passions. I was living my life in my own version of normal, capable of accomplishing anything and everything within my means.
Because of my physical achievements and fierce independence, offers of help bruised my ego or even angered me. On occasion I responded by embodying a praying mantis: ready, willing and able to bite someone’s head off. It didn’t matter if the person had the best of intentions or the assistance made my life easier. I’d react with a defensive hostility I’m embarrassed to confess.
For example, if someone asked if I needed help putting apples on the conveyor belt at a store’s checkout, I’d growl, “Why? Do you need help putting your food on the belt?” I’ve also been snarky to an airport employee who ushered me to security so I could avoid a long line. It made no difference that I was saved from missing my flight — that type of kindness was reliably met with the best evil eye I could muster.
Even when I was in a better mood, I resisted these gestures because I felt like they undermined my hard-earned physical independence. I was raised to believe that my most significant limitations were in my mind, namely if I didn’t believe in myself. So to accept any sort of special treatment made me feel like an impostor or even a fraud who was undeservedly taking advantage of a system designed to help people in need.
But then I had Ethan and Charlie. With them in the picture I grew acutely self-aware. It became my duty to teach them we have a societal role to play — we should respond graciously to offers of assistance, not because we always need it, but because others might. If I got angry, that same person I was responding to might later resist helping someone who truly needed it. I finally learned to swallow my pride and stopped lashing out against acts of kindness, lest my children follow that bad example.
While it took me years to navigate all of this, thankfully neither of our sons has been inclined to repeat my poor behavior or be fazed by all the attention. Recently, I received a WhatsApp message from Ethan during his semester abroad in Barcelona, Spain. Before returning he decided to backpack through Europe. From Paris he texted: “Hey Mom! I got in for free at the Musee d’Orsay and skipped the line. Ectrodactyly perks!” Indeed — sometimes we should allow ourselves to embrace the perks.
Still, people who are perceived as different or disabled like us are not the only ones who have something to learn about public interactions. When I am asked how I wish others would behave toward someone like me, who appears physically limited, my answer is simple: Don’t immediately rush for the save. Instead, take a breath and observe: Am I struggling and looking around for help? Or do I seem to be managing on my terms?
As much as I’ve evolved when it comes to well-meaning strangers, I hope for more understanding from those offering help, too. Although it might feel counterintuitive, taking that moment to challenge your assumptions about what we’re capable of helps us in a more critical way. It preserves our dignity — a true act of kindness.
