David Aguilar: Forget pity, I needed to change perceptions of disability

It all began in a hospital in Andorra, in room 102. My grandparents, my great-grandmother, and my aunts were all waiting – waiting for me. They already knew me: I was David Aguilar, the strong and healthy child my parents were expecting, whom my grandparents already adored, and the whole family was impatient for me to be born. 

My grandmother Basilisa, who I usually just called Abu (short for abuela or grandmother) or Abu Basi, sat there nervously rubbing her fingers, feeling emotional as she constantly twisted her wedding ring. She was waiting for her son, my father, to open the door at any moment with a smile on his lips and me in his arms, wrapped in the swaddling blanket she herself had sewn with such care, and… yes, I suppose that’s more or less what happened. Meanwhile, my father paced the long hallways from the surgery to the waiting room, eyes full of tears, overwhelmed by the circumstances. He didn’t dare enter the room right away. Finally, he opened the door – and there I was in his arms, wrapped in the swaddling clothes. But my father was missing a smile, and I was missing an arm, and the swaddling absorbed the tears that fell from his eyes. Things that happened. 

“Why that sad face, Ferran?” my abuela asked, getting up. “Is everything OK? Is Nathalie OK?” But my father couldn’t manage to speak a word, and the others couldn’t stop staring at him in fear. Everyone had paled when they saw him come in, whiter than the coat of any doctor in that hospital. 

And there I was, unaware of everything, of the fear my family felt, of my abuela’s unease and my father’s grief. So unaware that, well, I don’t even remember any of that, of course; I know it because I’ve been told the story so many times. 

“So David… so…,” he tried to answer. “David what?” At that moment, my abu came closer and uncovered part of the swaddling and saw for the first time my muñón, the stump where my right arm ended. 

“Oh, Ferran…” That was all she could say. “Just that… Just that… Otherwise the doctor says he’s perfect.” Basi began to caress my cheeks, my brow, my little head. She grabbed my little hand, the one I do have,
and rubbed it with her thumb. Then she kissed my forehead before saying, “Well, of course he’s perfect. Can’t you see?” Curiously, that kiss I do remember. 

You can imagine how the rest of that day went. And that week, and practically half my life. Looks of pity, like old friends, have always accompanied me. I even call them by their names, and we greet one another: there’s the penasco (from pena and asco in Spanish, when people feel pity but also disgust, as if my stump were going to bite them!), the penalivio (from pena and alivio, when they feel sorry for your parents but relief their own child was born with two arms), and the penobre (pena and pobre merged into a simple “Oh, poor thing”).  

The thing is, my mother woke up from the anesthesia a little while later, frightened at not seeing me, and when she could, she wept, of course, because it was a surprise for everyone. As if wanting to console us – almost without our realising it and despite it being February 25 – spring arrived early: the room filled with flowers, and the flowers hid words like “I’m so sorry,” “Have strength,” and “Our unconditional support” in the form of cards that pricked more than any thorns might.

As soon as they heard the news, distant relatives, neighbours and acquaintances all responded in this way, so that pollen flooded the room and made a permanent cloud that floated above the bouquets, which wound up piled outside, beside the door. Right now, the truth is I wish I could go back in time and appear there, in front of room 102, to side-step the roses, push through the daisies, open the door and tell my parents, “Don’t worry, you’ve done a good job.” 

At that moment, my missing arm seemed to them the greatest surprise of their lives. But the true surprises would come later, with what they and I would achieve. They’d wind up surprising themselves, and I’d wind up surprising the world. Mamá and Papá are now so proud of their work as parents. Calling what’s different a disability doesn’t do more than give anyone who is different nothing to live for. But I learned this only by travelling down the difficult path.

Piece by Piece by David and Ferran Aguilar, translated by Lawrence Schimel, is out now (Amazon Crossing Kids, £8.99). You can buy it from The Big Issue shop on Bookshop.org, which helps to support The Big Issue and independent bookshops.

This article is taken from The Big Issue magazine, which exists to give homeless, long-term unemployed and marginalised people the opportunity to earn an income. To support our work buy a copy! If you cannot reach your local vendor, you can still click HERE to subscribe to The Big Issue today or give a gift subscription to a friend or family member. You can also purchase one-off issues from The Big Issue Shop or The Big Issue app, available now from the App Store or Google Play.