SMA and Body Modifications: It’s My Choice

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by Kala Godin |

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People often assume that disability prevents someone from being physically able to express themselves. Especially in the form of body modifications. They would be wrong. One of my favorite forms of artistic expression is body modifications, specifically tattoos. They’re my favorite!

I started dyeing my hair in sixth grade. Since then, I’ve had almost every color you can think of. In 10th grade, I got my first piercings — my lip and my eyebrow. In 12th grade, I had my lip done again, mostly to spite a teacher. However, a while after I graduated, I took my piercings out and traded them for tattoos. (I’m glad I never got a tattoo in high school because I probably would have picked something stupid.)

I’ve gone in about four or five times to get tattooed. My longest session was six hours, when I got an entire mermaid sleeve done. This itty-bitty, 92-pound girl outlasted a burly guy. It was my proudest moment.

Sometimes I like to think that if things had turned out differently in my life, I’d have been a tattoo artist.

Like anyone with tattoos, people have commented to me about mine. Most of the comments are kind. However, not all of them are. And not all of them are even directed at me. But that really shouldn’t come as a surprise.

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People assume a lot of things about us. Many, many people assume that I am considerably younger than I actually am. While I’m about to turn 22, I often pass for 15 or younger. No matter the context or clues that others are given, I am not often thought of as an adult.

I feel bad for my mom on these occasions.

My family and I were in a bar lounge celebrating an event. This was the second time that I’d been in a bar, the first being my 18th birthday. I am not into drinking, but occasionally, I do partake, like any person my age.

Context clues:

Bar? Check.
Glass of alcohol sitting in front of me? Check.
Arms full of tattoos? Check.

If my body wasn’t so small, and honestly, if the wheelchair wasn’t in the picture, most would know that I am old enough.
Nevertheless, a woman cornered my mom in the bathroom.

“How can you let that little girl do that to herself?” she asked my mom, who does not put up with that stuff. My mom was a bit confused, though she probably expected what came next. “The little girl in the wheelchair! How could you let her get those tattoos?”

My mom always has quick and witty comebacks to these types of comments. (And yes, as you can probably tell, my mom is my hero.)

This was her answer: “That little girl is 20. I don’t know if you can tell from the paralyzer that she’s drinking? She is legally allowed to do whatever she wants with her body. Mind your own business.” As I said, she doesn’t put up with that crap.

That’s just one experience.

One doctor asked if I had drawn the tattoos on my arms before coming to the appointment. My appointment was at 8 a.m., and we had driven two and a half hours to get there.


I sure as heck wouldn’t be drawing in the dark in a bumpy vehicle at 6 a.m. For one, I don’t even have the range of motion for that, as I can only reach about 2 inches of skin on one arm. How the heck would I be able to draw on both arms all the way up to my shoulders? It’s hard enough to eat in a vehicle.

It’s the nice comments that we should pay attention to. But the odd or the awkward ones are the kind that make me laugh.

See you next week!

If you have any comments or questions about body modification, please don’t hesitate to ask in the comments below.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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