Keilen Frazier kfrazier@charlotteobserver.com
If you ask Giovanna Dubuc how she lost her right hand, you might get a straight answer.
And the 16-year-old Community School of Davidson student’s straight answer is: “I didn’t lose it. It’s just the way that I was made. ... It’s actually something called amniotic band syndrome. The bands that surround the amniotic sac, they’re supposed to get bigger as the fetus gets bigger. ... And instead of getting bigger, one of them just got smaller, and it stopped the development of my hand.
“So, when I was born, I just had one hand.”
Then again, if you catch her in the right (er, the wrong?) mood, Giovanna may well try to pull your leg.
“I’ve made up so many stories,” she says, laughing, as she sits in the living room of her family’s home in Charlotte, where her parents settled in 2003 after moving from Venezuela. “There’s been the koala attack, there’s been the alligator, there’s been the crocodile. ‘Oh, I fell.’ ‘Oh, there was a car...’ There was the machete one. That one was funny. Bitten off by zombies. One time it got stuck under a piano, they were like rolling it. And there’s always the good old shark attack.”
Despite having lived her entire life this way, Giovanna continues to be fascinated — and periodically just a little perplexed — by the endless fascination with her missing appendage.
Of course, sometimes the attention is warranted.
Most notably, when she was 14, she made headlines when she became the first person in North Carolina (and one of the first in the U.S.) to be fitted with a “Hero Arm,” a 3D-printed bionic prosthetic arm that allows the wearer to control it using electrical signals generated naturally by his or her own muscles.
She’s also gotten attention for her talents with the violin, which she has played since she was in kindergarten using a specially designed prosthetic; for public-speaking engagements where she shares her personal story and promotes awareness of people with disabilities; and for her newest obsession, climbing.
Giovanna first tried scaling a wall at an indoor gym less than three years ago. This past June, she placed second in the “AU2 category” (athletes with one arm with a forearm amputation or a limb deficiency) while competing against adults at the 2021 Paraclimbing National Championships in Utah. In October, she’ll head west for the 2021 Paraclimbing World Cup.
While she understands why her accomplishments have attracted attention, she also thinks that people too often get overly excited about seeing someone with a disability do, well, pretty much anything — and she also wishes that those who feel sorry for her would quit it.
So we invited her to share thoughts on these and other topics, as a one-handed young woman in an able-bodied-centric world. What follows are Giovanna’s own words, as told to the Observer, with portions edited for clarity and brevity.
‘Yes, I can. Watch me.’
My parents made the decision to actively try and treat me normally. They just really drilled it into my head that my limb difference wasn’t my life. That I had so much more to me, and that I could be independent. That I didn’t have to really depend on anybody else to live my life the way I wanted to, and that I was really free to do anything that I want.
So as a child, honestly, I didn’t feel different at all. It was just like, Yeah, I have a little nub, nobody else has a little nub, that’s how life is and we move on.
I remember — it was probably in preschool — there was this one boy, and we were on the playground. I was on the swings, and then I went to the slide, and he said, “You can’t do that. That’s weird.” And I said, “Yes, I can. Watch me.” Then I did it.
When I was 6, I had a friend at school who played the violin. The moment I held her violin in my hands, and I was like, I love this instrument. It seemed like so delicate, but it made this amazing sound on the inside. I was so drawn and attracted to it. I just thought, This is great, and I want to do it, and I want to do it now.
I talked to my parents and they were like, (pause) “What?” I always like to joke that their first thought was, Oh no. This is what we get for telling her that she can do anything.
I don’t think of my disability as a limiter.
I was introduced to climbing by a guy at the place where I get my prosthetics. He took me to the climbing gym, and it was amazing. I just couldn’t stop thinking about it.
When I climb, I’m very dependent on my technique. I don’t use a prosthetic limb. I used to use tape to protect the skin on my stump. But once I got better at climbing and was climbing harder things, then I realized that I need to feel the wall. When you’re talking about a hold that you’re using, you want to know in which way you can use it — how’s it angled, what are the features on it, the texture. So nowadays I don’t use anything on my arm and I simply just, like, go for it.
Also, I really rely on my feet and my footwork to help me adapt to the route that I’m climbing, since it’s almost always designed for an able-bodied person.
I don’t think of my disability as a limiter when it comes to climbing. I think of it as, in fact, something that empowers me to think differently. Because I can do the same thing that someone else can do — I just have to do it differently. I have to find a separate way to get up the wall.
Obviously, when I’m climbing around people who don’t know me, I automatically get attention because I’m missing my hand. But it actually helps me. It really does. Just because I do better when I know I’m being watched.
What am I inspiring them to do?
People often say to me, “Wow, you’re so inspirational.” And they mean well. They’re trying to say something nice to make you feel better. But when all I’m doing is walking across the street and someone calls me inspirational, I’m like, What am I inspiring them to do?
I’ll say, “Thank you!” But they don’t know who I am, they don’t know what I do, and they’re calling me inspirational — for what reason? Again, what am I inspiring them to do? How are they going to make their lives any different? You can say someone or something is inspirational, but real inspiration creates change.
Most of the people that have said, “You’re so inspiring” to me probably have not created change after seeing me.
At the same time, I know that I can be inspiring to someone who sees me rock-climbing and is like, “Oh my God. I didn’t think about trying that. I want to try it now.” That is an example of an inspiration.
I love having one hand.
I can guarantee that, when I was really little, I probably said, “Yeah, I kind of want two hands.” Just because at some point somebody probably made me feel bad about my disability.
When I was about 8 years old, I was asked that question, and I remember saying, “No, I don’t want two hands.” But I didn’t really believe it. I wasn’t 100 percent committed to my identity at the time. I think I just said it because everybody was looking at me, and that seemed weird to say otherwise in front of other people.
In high school, I distinctly remember the day I was told that my quality of life could improve if I had the use of a better prosthetic. I didn’t know how I felt about that. I went to school, and when I saw my favorite teacher in the hallway he asked me how I was. And I was still kind of processing. I was like, “Yeah, I’m good.” But he said, “Something’s definitely on your brain. Come on, we’ll talk about it.”
I told him about what I’d been told about prosthetics and quality of life, and that I was stuck on the specific words: “quality of life.”
I told him that, with a better prosthetic, I didn’t think my quality of life would get any better. I said, “I would be able to do more things. I would feel more comfortable. But the quality of the life I live, the experiences that I’m going to enjoy, the talks that I have with my family and the laughs that I laugh are not going to be any different because I have a better prosthetic.”
And he said, “Gio, who do you think determines ‘quality of life’? I was like, “I have no clue.” And he goes, “Yeah, me neither. So how can they tell you that your quality of life could get any better or worse?”
Today I can confidently say, with all the parts of my brain, that I love having one hand.
It has presented me with an insane amount of opportunities to get my story out there. I have gone to places, I have attended festivals, attended summits that I never would have. It has been a portal for me to find an insane amount of people in a community — the adaptive climbing community — that I had never known was there. I would have never known that 80 percent of the people in my current friend group existed.
I am so grateful that I have a disability. I am so happy. My disability makes me whole. There’s no little voice in my head that’s like, “Oh, your life would be so much easier if you had two hands.” No!
My life would be probably a lot of the same, but without as many friends, and probably into different sports, and — it would be different.
And I don’t want that. At this point, I just wouldn’t trade the life I have for anything.
Théoden Janes: 704-358-5897, @theodenjanes