Teenage boy with one hand on rock climbing, living with a disability
If you ask Giovanna Dubuc how she lost her right hand, you might get a straight answer.
And the direct response from the 16-year-old from Davidson Community School is, “I didn’t to lose this. It’s just the way I was made. … it’s actually called amniotic ring syndrome. The bands that surround the amniotic sac are believed to grow larger as the fetus grows. … And instead of getting bigger, one of them got smaller, and it stopped the development of my hand.
“So when I was born I only had one hand.”
Then again, if you catch her in the right (uh, bad?) Mood, Giovanna might just try to pull your leg.
“I made up so many stories,” she laughs, sitting in the living room of her family’s home in Charlotte, where her parents moved in 2003 after leaving Venezuela. “There was the koala attack, there was the alligator, there was the crocodile. “Oh, I fell. ‘Oh, there was a car …’ There was the one with the machete. This one was funny. Bitten by zombies. Once it got stuck under a piano, they felt like they were rolling it over. And there’s always the good ol ‘shark attack.
Although she has lived her entire life this way, Giovanna continues to be fascinated – and periodically just a Small perplexed – by endless fascination for his missing appendix.
Of course, sometimes the attention is warranted.
Most notably, when she was 14, she made the headlines when she became the first person in North Carolina (and one of the first in the United States) to be fitted with a “Hero Arm”, a 3D printed bionic prosthetic arm that allows the wearer to control it using electrical signals naturally generated by their own muscles.
She has also drawn attention for her talents with the violin, which she has been playing since she was in kindergarten using a specially designed prosthesis; for public speaking engagements where she shares her personal story and educates people with disabilities; and for his new obsession, climbing.
Giovanna first tried climbing a wall in an indoor gym less than three years ago. Last June, she placed second in the “AU2 category” (athletes with one arm with a forearm amputation or limb impairment) while competing against adults at the 2021 national para-climbing championships in Utah. In October, she will head west for the 2021 Paragliding World Cup.
While she understands why her accomplishments have caught the eye, she also thinks people are too often too excited to see a person with a disability doing, well, just about anything – and she also wishes let those who pity her leave him.
So we invited her to share her thoughts on these and other topics, as a lonely young woman in a world of able-bodied people. The following are Giovanna’s own words as told to the Observer, with portions edited for clarity and brevity.
‘Yes I can. Look at me.’
My parents made the decision to actively try to treat me normally. They really made me realize that my limb difference was not my life. That I had so much more to myself, and that I could be independent. That I didn’t really have to depend on someone else to live my life the way I wanted, and that I was really free to do whatever I wanted.
So as a kid, honestly, I didn’t feel any different at all. It was just like, Yeah I got a little knot nobody else got a little knot that’s how life is and we move on.
I remember – it was probably in kindergarten – there was this boy, and we were in the playground. I was on the swings, and then I went on the slide, and he said, “You can’t do that. It’s weird. And I said, “Yes, I can. Look at me.” Then I did.
When I was 6, I had a friend at school who played the violin. By the time I held his violin in my hands, and I was like, I to like this instrument. It sounded so delicate, but it made that amazing sound inside. I was so drawn and drawn to it. I just thought, It’s great, and I wanna do it, and I wanna do it now.
I talked to my parents and they said (pause) “What?” I always like to joke that their first thought was, Oh no. This is what we get to tell her she can do whatever.
I do not consider my handicap to be a limiter.
I was introduced to rock climbing by a guy at the place where I collect my prostheses. He took me to the climbing gym, and it was incredible. I couldn’t help but think about it.
When I climb, I am very dependent on my technique. I am not using a prosthetic limb. I used to use duct tape to protect the skin on my stump. But once I got better at climbing and climbed more difficult things, I realized I had to to feel the wall. When you talk about a plug that you are using, you want to know in what ways you can use it – how is it tilted, what its characteristics are, its texture. So these days I don’t use anything on my arm and just, like, go for it.
Also, I rely a lot on my feet and footwork to help me adjust to the route I am riding as it is almost always designed for an able-bodied person.
I do not consider my handicap to be a limiting factor when it comes to climbing. I see it as, in fact, something that allows me to think differently. Because I can do the same thing someone else can do – I just have to do it differently. I have to find another way to climb the wall.
Obviously, when I climb around people who don’t know me, I automatically get attention because I miss my hand. But it actually helps me. It really is. Just because I do better when I know I’m being watched.
What do I get them to do?
People often tell me, “Wow, you are so inspiring”. And they mean well. They are trying to say something nice to make you feel better. But when all I do is cross the street and someone calls me inspiration, I think to myself, What do I get them to do?
I will say, “Thank you! But they don’t know who I am, they don’t know what I do, and they call me an inspiration – for what reason? Again, what do I get them to do? How are they going to change their life? You can to say someone or something inspires, but true inspiration creates change.
Most of the people who told me “You are so inspiring” probably didn’t create a change after seeing me.
At the same time, I know I can be an inspiration to someone who sees me rock climbing and says, “Oh my God. I didn’t think about trying this. I want to try it now. This is an example of inspiration.
I like to have a hand.
I can guarantee that when I was very little I probably said, “Yeah, I kind of want two hands.” Just because at some point someone probably made me feel bad about my disability.
When I was about 8 years old, I was asked this question, and I remember saying, “No, I don’t want two hands. But I didn’t really believe it. I was not 100 percent committed to my identity at the time. I think I just said it because everyone was looking at me, and it felt weird to say the opposite in front of other people.
In high school, I vividly remember the day I was told that my quality of life could improve if I had the use of a better prosthesis. I didn’t know how I felt about it. I went to school and when I saw my favorite teacher in the hallway he asked me how I was doing. And I was still processing. I was like, “Yeah, I’m fine.” But he said, “There’s definitely something going on in your brain. Come on, let’s talk about it.
I told him what I had been told about prostheses and quality of life, and that I was stuck on the precise words: “quality of life”.
I told her that with a better prosthesis, I didn’t think my quality of life would improve. I said, “I would be able to To do more things. I would feel more comfortable. But the quality of life I live, the experiences I will have, the discussions I have with my family and the laughs I laugh will not be any different because I have a better prosthesis.
And he said, “Gio, in your opinion, who determines the ‘quality of life’? I was like, “I have no hint. ”And he says,“ Yeah, neither do I. So how can they tell you that your quality of life could get better or worse? ”
Today I can confidently say with all parts of my brain that I love having a hand.
It gave me an insane amount of opportunities to share my story. I’ve been to places, I’ve been to festivals, I’ve been to summits that I never would have had. It has been a portal for me to find an insane number of people in a community – the adapted rock climbing community – that I never knew was there. I would never have known that 80 percent of the members of my current group of friends existed.
I am so acknowledging that I have a disability. I am very happy. My disability is healing me. There isn’t a little voice in my head telling me, “Oh, your life would be so much easier if you had two hands. ” No!
My life would probably be about the same, but without so many friends, and probably in 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.
This story was originally published August 20, 2021 11:33 a.m.