guest post – a sister’s perspective on difference

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A few days ago, I asked my younger sister Meaghan if she would write a guest post on what it’s been like growing up with a sister who has a limb difference. She’s a talented writer and has her own blog, Hope in the Little Moments. So I’m pretty confident you’ll enjoy her piece.

I used to call it her “Baby Arm.” I was probably about six at the time, and she didn’t seem to mind this nickname. In fact, she would indulge my happiness over the fact that my older sister was unique. Drawing a face and hair at the end of her shortened limb with a Sharpie, she’d tuck her littler arm into the other, cradling it like a real baby. I really got a kick out of this. Sometimes she even threw a blanket over the arm to form the “baby’s” body, and I would laugh and be in awe of how my sister was able to pull off such an awesome trick.

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Matching outfits, circa 1997

Gradually, as I grew older, I realized that maybe it wasn’t right to be pointing out the fact that she was special, that she could do things that I couldn’t or – more often than not – that I could do things that she couldn’t. This tiny seed of awareness began to take root when my mother became increasingly furious every time I talked to my sister about her “baby arm” or even mentioned the loving term. I wondered what the big deal was. I was only showing my sister my appreciation of this difference that made her amazing in my eyes, but my mother shot me down. That was when I took note of how others would look at the girl who would walk beside me to school each day.

People turned away. They looked shocked. Children would point. Adults would point. But mostly, there was pity in their eyes. That…that I just didn’t understand.

One day a few summers ago, as I was walking with my mom to the supermarket, I saw a man in a power scooter trying to maneuver around sidewalk construction. He slowly (and with obvious difficulty) drove around the planks on the ground, getting his back wheel slightly stuck in one of the ditches between the wooden frames. Making his best efforts to find a spot that would grant him safe transportation from the elevated walkway to the street inches below, the man moved his joystick back and forth, searching for the best angle to make his way down. That’s when I heard a click of the tongue beside me that was followed by a deep sigh.

“What, Ma?” I wanted to know.

“It’s just,” she sighed once more. “Look at the poor, poor man!” She practically shouted this, as her ‘discreet voice’ was overridden by her innate Hispanic loudness. “I mean, he isn’t even able to cross the street. Can you imagine that, Meaghan? That’s so sad!”

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Done with the era of matching outfits (thank God)

Her face was full of pity and her eyes were slightly wet. I honestly don’t know if the man in the scooter heard us or if he ever actually made it off that broken sidewalk, but I was filled with so much shame that I just turned around and walked home by myself.

I didn’t think that the man deserved to be pitied. Sure, he may have had some difficulty crossing the street when there was a huge obstacle around him, but he would eventually overcome it. Yeah, maybe he’d gone through a great deal more than the average Joe, but that’s what made him awesome and unique, not pitiable.

Though my sister may have a limb difference, she is no less capable of doing things than anyone else. Sometimes the challenges in front of her may be more difficult than they are for me, but that’s what has made her such a strong person over the years. She doesn’t accept when the world tells her “No,” so she decides to answer back with a whopping, “Screw you! I can play guitar if I want to. AND run my own blog. AND work a full-time job. AND still be fabulous doing it all. What’s stopping me? This arm? What?! No! No to you, universe! I can do anything I set my mind on doing.”

And the great part about that all is that she basically does. She’s taught me to be bold and fight for what I want, something I tend to be hesitant about ever doing. Though she may not know it, she guides me and teaches me to be humble and accepting of others.

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Family time

One of the awesome things that has happened in my life recently is that I found a boyfriend. The amazing guy I met was strangely a little worried that I wouldn’t accept all of him. He thought I knew already, since we’d been friends before and had clearly seen him limping around campus, but I was surprised to discover that he had a club foot as a baby and had to have a surgery that left one foot much smaller and more twisted than the other. I laughed because I couldn’t believe he thought I’d reject that part of him; I actually think it’s cute, to be honest. It’s like a little “Baby Foot,” if I could exhume the nickname. So perhaps I didn’t care because I grew up around a sister whose limb difference taught me about accepting others with each and every part that makes them who they are.

Then again, maybe I didn’t care because it’s nothing worth really caring too much about anyway. It’s just…them.

 

Always,

Meaghan

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culture collision

There are quite a few things you can learn about me just by looking at me. You can easily tell that I’m pretty tall, that I care about what I’m wearing and how I present myself, and that I have one hand. But something that always seems to take people by surprise is when they find out that I’m Hispanic. Granted, it’s not the most important fact about me and I’m probably not going to introduce myself as “Hi, I’m Caitlin and I’m Hispanic”, but it’s so funny to me how people instantly assume I’m either Irish or Italian or any number of different European nationalities. (And they’d be right on some level, since my entire family has roots in Spain.) But it usually takes listening in on me conducting a phone call or conversation entirely in Spanish for most people to realize that they had it all wrong.

La Caridad del Cobre

I was born here in the U.S. to Cuban parents, years after they’d left their beloved homeland and established themselves in the land of the free. Just to be clear, they met and married here (well, in Miami), so I’ve lived my whole life in Jersey. I grew up listening to Celia Cruz, dancing to salsa, and eating arroz con pollo and lechon. I learned to speak and read English and Spanish together, and I celebrated Christmas on Christmas Eve (aka Nochebuena). As much as my family has assimilated into standard American culture, they have not given up the traditions of their motherland. And that’s something that I want to explore because one thing that definitely plays into how people view disabilities and limb differences is culture.

Although I’m not an expert sociologist and can’t tell you exactly how Cuban or Hispanic cultures as a whole see disability, I will say that everyone around me was pretty supportive while I was growing up. My parents encouraged me to try and fail and try and succeed with everything in life. They didn’t really treat me all that differently, and they expected the same straight-A report cards and model behavior from both me and my three-years-younger and physically normal sister. But as much as I’d love to think so, I can’t say that there was no pain or drama tied to my family’s sentiment towards my limb difference. My hand is not something I openly discuss with them because it just brings back too many hurts. Still, the worst of it was from my maternal grandparents, who once desperately attempted to hide me (and my lack of a hand, specifically) from their neighbors when I was just a kid. (I still haven’t forgiven them for that, but it’s not like they ever apologized anyway.) I know they didn’t do it out of cruelty, but it wasn’t exactly the message of acceptance and unconditional love most would agree you should show a 9-year-old. And of course, I do think that their years of living in a very rural area in Cuba added to their naivety.

Painting of Cuban patriot Jose Marti

Anyway, I expected the same sort of hushed and self-conscious behavior from my boyfriend Chris’s family. He’s half-Irish and grew up very close to his Irish roots. I thought that they would treat my limb difference as something very unfortunate and sad, but that’s not the case at all. I asked Chris if they’d ever commented on my hand or said anything negative about it, but he answered that they hadn’t. About a year into our relationship, he casually mentioned that one of his cousins wore a prosthetic leg. “Wait…what?” was my response, as I stopped him mid-sentence. He seemed perplexed a second before he realized why I’d stopped him. “Oh,” I remember him saying. “I never told you?” No, he hadn’t. He had completely forgotten by complete accident. To Chris (and to his family), something like a limb difference wasn’t a big deal. I don’t know if that sentiment is an Irish thing or just a Chris’s-family thing, but I have noticed (based on my own experience) that people from European cultures are much more likely to overlook a disability and to separate it from the person’s personality in general. Hispanics, though many usually do get over the disability, tend to be initially filled with (always unnecessary but typically well-meaning) sympathy and pity for what I (or whoever it may be) have “lost” or lack. This is especially common in older people, particularly those who grew up thinking that disability is caused by an “evil eye” or as punishment by God. This is not always the case, though. There are exceptions in all cultures. And while I don’t know in exact detail how culture affects or defines the way people look at disability and limb difference, I do think it’s a very interesting topic to look into.

Let me know what you think about the connection between culture and attitude toward disability in the comments below.

Peace,

Caitlin Michelle

Photo of Cuban flag found on Google Image search, rest taken by me at Cuba Nostalgia event
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