Hiding Hand/Arm Differences and Other Issues of Self Acceptance
This is the world we live inLand of Confusion, Genesis, Invisible Touch, 1986
And these are the hands we’re given
Use them and let’s start trying
To make it a place worth living in.
Those of us with hand/arm differences wear our strength and our vulnerability visibly – right out there for the whole world to see. I do not distinctly remember when I began to hide my little left hand from view by shoving it in my pocket. But I do recall from a very early age sensing that I was different from other children, and that my hand was what made me different. I must have assumed that if I hid my hand, then others couldn’t see it, and therefore no one would know about it. The big lie. In countless social situations (meeting kids my age in Girl Scouts, youth soccer, and summer camp), not only did my peers often notice my other-ness instantly, they made sure that everyone else saw it as well by “outing” my difference. Looking back, I realize that I was only fooling myself by concealing my hand.
But how can I explain all the times that people did not notice, even though my difference was glaring? My elementary school gym teacher, for example, who taught me in grades one through five, never noticed. My fourth-grade music teacher never noticed. Perhaps they didn’t catch it because, ironically, in those circumstances, I didn’t try to hide my hand. In sports and other activities, I was determined to try everything “normal” kids did. To participate successfully in sailing lessons, horse-back riding, photography, and leather-working class, my hand had to be out of my pocket.
Even with all of these activities, it took me many years of hiding before I could just let my hand be exposed to the world. I felt extremely uncomfortable and completely exposed when my hand was “out there” for everyone to see. Ultimately, I learned that it was the only way for me to grow into accepting myself. So I want to suggest to parents that you encourage your sons and daughters to empty their pockets and stop hiding their different hands/arms since people notice the difference anyway and ask questions. Give your child practice in responding to these awkward, sometimes offensive, and inevitable questions. Sit down with your child and role-play the situations, practicing appropriate and self-protective responses.
However, depending on your child’s age/stage of development, their personality, and the nature of their difference, it may be important – and necessary – for them sometimes to hide their hand. As people often say in matters of parenting, choose your battles wisely. If your child wants to hide their hand sometimes, you can talk about it, but ultimately it is their choice. And you can’t do anything about it when you are not with them anyway, which will be much of the time once they are in school.
“My son’s friends accept him exactly the way he is,” you say? “Everyone loves our Joey, no matter what his hand, arm, leg … looks like.” Others’ acceptance towards your son or daughter is the crux of my next suggestion. Encourage him or her to share with others. There comes a time for every kid when it gets too difficult and painful to run home crying to mom or dad after being asked or teased about their difference. When I was little, my mother always salved my hurt feelings and bruised self-confidence with love, kisses, and cuddly stuffed animals (I still have many of them). When someone would bring up my hand early in the school day, I sometimes would hold in feelings of shame and embarrassment for hours, until I saw my mom later. Or when someone would make a big deal about my hand the first night of a three day school trip, I would hold in the hurt for days.
As I got a bit older, I began to withhold from my mom how much it hurt when people asked me about my hand; I guess I thought that I was supposed to know how to handle the discomfort by myself. Instead of sharing with my closest friend, a trusted teacher, or my older brother, I withheld my feelings from others. I thought that “being strong” meant holding it all together. “I’ll just be tough,” I would tell myself, “They won’t see me cry. I’m a big girl; I can handle this myself.” Unfortunately, by not sharing, I buried many wounds inside, cutting words that went deep within.
Often, questions about my hand come completely out of the blue, and there’s no time to anticipate or plan a response. I’m standing at the counter at a convenience store, when the cashier casually asks (in the same tone of voice as if she were inquiring the time), “What happened to your hand?” Or, while I’m walking in the park, a stranger asks the same question. I’m asked a couple of times one month, then not for a year. It’s strange. And after all of these years, I’m still often caught completely off-guard.
I have found that there are a number of ways to respond to questions, depending on the circumstance, my relationship to the asker, the asker’s intention, and my confidence level at the moment. When I’ve felt really exposed and vulnerable, I have considered (but never actually dared) an angry or vindictive response, such as asking back, “What happened to your face?” Unfortunately, such answers rarely empower. A less retaliatory alternative employs humor to tactfully make light of the situation: “My hand? OH MY … where did my fingers go?? I just had them! Can you please help me find them?” When I’m standing in a group, my inclination often is to avoid a focus on my hand by changing the subject. I recognize, however, that for me, it can be more helpful to answer directly and move on.
Sometimes I would ask back, “What do you mean by ‘happened’?” To the quizzical looks, I share my spiritual outlook that G-d made me this way. When it seems appropriate, I take the opportunity to educate the inquirer with the most probable medical explanation of amniotic band syndrome. Sometimes a stranger will preface “the question” with: “I hope you don’t mind if I ask, but …” If I think that he merely wants to know where I bought my shoes, I may answer “yes.” But, in twenty-six years, only one question has ever followed that opener: you know, “the question.” I have learned that sometimes I prefer not to share extremely personal information with people whom I do not know very well. In this context, for example, I might offer this stranger the opportunity to reconsider the propriety of his inquiry: “Well, that depends. Will it hurt?”
Just to reiterate, the important issues to address the issue with your child are discussing strategies and choosing responses that they tolerate. The issue won’t go away by itself, but you have a wonderful opportunity to help your child feel empowered. I’m certain that many of you have probably figured out a better response than any of these. I’d love to hear how you and your child have dealt with “the question.” At one of the weekend sessions for parents with children with hand differences, one mother recounted overhearing her four year old daughter’s explanation of her missing hand to another four year old. To this day, it is still the most beautiful response I have heard:
When I was an angel in heaven, I had two hands, and another little girl had no hands. So I gave her one of mine.
©2022. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.