You were born with Poland syndrome. Briefly explain what it is. How does it manifest?
Poland syndrome is a congenital disorder characterized by the absence or underdevelopment of the pectoralis major muscle on one side of the body. It can also affect the shoulder, arm, and hand. It is believed to be due to an alteration in embryonic circulation during gestation. There are different degrees of involvement, and in my case, I have a severe condition that affected my pectoralis major muscle, forearm, and right hand.
What is your earliest memory of being different? Do you remember how you reacted to your own difference?
Without a doubt, when I walked with my parents on the street or in the park. I noticed people's stares. Especially on my first day of school. That day I knew it would be the beginning of a life of differences.
To a significant extent, Piece by Piece is a celebration of how your parents, particularly your father, Ferran, responded to people’s stares and their negativity with regard to your difference.
It's natural; every parent wants the impact of being different not to negatively influence you or affect your personality. Rather, it should become your strength to move forward and overcome this and other obstacles that life presents. Of course, I probably saw it differently as a child, but as you get older, you're grateful for having those parents who, under their umbrella, have shaped me into the person I am today. On page 11, in the chapter "Neckbreaker" you'll learn how my father and I used to play on the street, transforming other people's stares into a game.
What event or series of events in your early childhood inspired or catalyzed the desire, or rather, the will, to build your first MK prosthetic arm out of Lego bricks? You were just 9 when you built it!
My parents started buying me Legos when I was 5. It all started with Kinder chocolate eggs, which contained toys that you could assemble and which could transport you to incredible worlds. Seeing my great skill and dexterity, and wanting to enhance my cognitive abilities and fine dexterity with my small hand, they decided to help me develop thanks to the most appropriate toy for this purpose: LEGO.
At age 5, I was in one of those moments when being different meant coming home from school to a story about bullying, laughter, mockery, or aggression for being different. When I got home before dinner, I took refuge in my Lego bubble, and it was during one of those daydreaming moments when, wanting to build a boat, I realized something. I was just building the keel of the boat—you know, the bottom part that makes it float. So, I held it up to my little arm and realized that if I wrapped it around my arm, instead of building a boat, I could build something much more brutal. I could build precisely what I don't have: an arm. So, with traditional Lego bricks, a wire, duct tape, a keychain strap, and robot parts , I built my first arm. My father encouraged me to take it to school because he knew the admiration of teachers, and especially students, would have a very positive impact on me. And so it did… Even the kids who bullied me expressed amazement. But it didn't last long…
You are a passionate activist against #bullying, particularly in schools and the workplace. When you're in the field, what example of harassment from your own experience do you cite most frequently and why?
I always tell the same story: when I was 15, a boy, to really hurt me, told me it wasn't my fault I was born that way, it was my mother's fault. Which made me incredibly angry. It was tragic.
Tell us about your charity brand, Hand Solo and how the idea for it came about.
When my father made my story of overcoming known, he decided to register my alias, HAND SOLO, because he was very sure that my story would travel far and wide. At that time, thanks to the international media, David Aguilar, alias Hand Solo, was already known. I was already giving lectures all over the world under my alias. Our trademark and patent attorney warned us that Disney would surely oppose it since, logically, they protect their intellectual property. When our attorney informed us that they had received notification of opposition to the trademark, my father didn't give up and decided to send a letter to Disney explaining our reasons. At that very moment, I was giving a lecture at NASA, and to that six-page letter, I attached a photo in which I appeared at NASA giving a lecture to many of the most important companies in the world. That letter convinced them because we detailed our most sincere desires to create the most important inspirational and human improvement brand in the world. A brand where the name Hand Solo is synonymous with a series of values such as self-improvement, ingenuity, creativity, and above all, respect, tolerance, and inclusion. A brand where the sale of its merchandising products and any profits generated are used to support disability associations and the fight against bullying. We're now looking for investors to help us internationalize the brand and allow us to reach the point where it can be licensed to convey those much-needed values to children and adults around the world.
I have reviewed your book, Piece by Piece: How I Built My Life, here on Borders. I know it has travelled far. Give me a news update.
Piece by Piece has already been translated into six languages—English, French, Greek, Polish, and Chinese—and will soon be released in Korean. The rights to a film have been acquired, which is currently being scripted by a well-known Spanish screenwriter named Amaya Muruzabal. The producers are very excited and believe it could be a huge success. As much, if not more, than the film "Wonder," a very similar theme in which the protagonist has a physical disability and the love of those around him helps him overcome it.
Your story will resonate with entrepreneurs around the world so please use this interview not only biography but as a Call to Action. Here’s the mike.
Thank you, Olatoun. We take this opportunity to call on entrepreneurial readers who would like to learn more about our HAND SOLO brand project. Our goal is that when this film is a success and reaches hearts around the world, it will already be well positioned for that moment. Those interested can contact us by email at: info@handsolo.com
The STEAM spirit is the spirit that fuses and defines your vocational activities. Tell us about David Aguilar's vocation from a STEAM perspective
There's a lot to say and be thankful for, no doubt. Everyone has collaborated on different projects and continues to do so. As I've mentioned before, since my father convinced Disney to let me use my alias, a succession of events have occurred, leading institutions of this caliber to join me in my quest to use my story as an inspiration, motivation, and awareness-raising event. The Andorran government subsidized my documentary Mr. Hand Solo, which won the world's most important science fiction film festival. The Boston Sci-Film Festival, where Star Wars won at its premiere 47 years ago, and where, 47 years later, my documentary Mr. Hand Solo won. A beautiful paradox of life, don't you think? My country's government likes to use my story of overcoming challenges as a great example, and I was awarded an ambassadorship thanks to the CEA (Andorran Business Confederation) for sharing my example around the world. It's a great honor.
You’re an ambassador for LEGO as well arent’you? How did the company get to know about you?
Lego Education became aware of my story of overcoming challenges when my father, with all his good judgment, published a video sharing my story. It was then that Yannick Dupont, one of its top executives and much loved by us, made my story known internally to the point of inviting me to Lego headquarters in Billund (Denmark) to help develop the new Spike Prime pieces, which are used in today's STEAM education to teach science, technology, arts, and math. It was an incredible week in which I demonstrated that with these new pieces, sensors, motors, and control units, I could build five different arms. I met and had access to the most secret laboratory where very few can enter. I met the manufacturers of the helicopter that gave rise to my Mk-1. I also met the designer of the airplane and crane for my Mk-2 and Mk-3. I later became an ambassador for Lego's most important marketing campaign of all time. It’s called #rebuildtheworld. They allowed me to film myself at the facilities to create content for my documentary Mr. Hand Solo and to interview all of them. Even the company's CEO, Niels B. Christiansen, whom I had the great honor and pleasure of meeting, embracing, and interviewing. I have given various talks to Lego's top executives and employees, who have shown me great affection, esteem, and admiration on social media from the very beginning, especially on LinkedIn.
There’s an extensive article about you on the World Intellectual Property Organization (WIPO) website. Tell us about WIPO’s role in your success.
WIPO has played a crucial role in all of this. Convincing Disney was a major milestone because WIPO registers and regulates trademarks and patents worldwide. When my father registered the trademark "Hand Solo," our lawyer submitted the request to WIPO for processing, and they were the ones who informed Disney about it, as the phonetic and written similarity was more than evident. Initially, they filed an opposition, and they processed it for us. When my father wrote the letter while I was at NASA and sent it to Disney through our lawyer, they fully understood our project and subsequently authorized it. WIPO was surprised and intrigued and later invited us to visit their incredible facilities in Geneva, Switzerland. I held an online conference for more than 1,200 children from 150 countries to raise awareness about protecting and registering their intellectual property. WIPO recorded a three-minute report to translate it into the nine languages in which the organization operates and post it on all their social media channels.
It’s great that WIPO saw the opportunity to target populations of child inventor-entrepreneurs with the knowledge you now had about protecting intellectual property.
It was great. Since then, and thanks also to my Government, through the Andorran Embassy in Geneva, they have promoted several conferences at the UN, WIPO, and various schools. Our entire family and I myself are very grateful to our Head of Government, Xavier Espot, Ambassador Ferran Costa, Secretary General Ester Fenoll, and their entire government team, past and present, for everything they do for us in this effort to inspire, motivate, and raise awareness.
Finally, another Aguilar family inspiration is your sister, Naia. She’s worked in Africa as a volunteer in primary schools. I’m sure she must have shared lots of news with you about the schoolchildren she was working with and about the state of their education.
My sister Naia is finishing her degree in Early Childhood Education and wants to be a teacher like my grandfather Juan Aguilar, who was a great educator in a country of 80,000 people. Thousands of students passed through his hands during his nearly 40 years as an educator. We've witnessed the great affection his students had for him because of his personality and his way of teaching. That has certainly influenced us. Especially Naia, who has wanted to follow in his footsteps by educating the little ones. She went to Tanzania for her final year project to help rebuild a school in a very remote village and create a new one. To achieve this, everyone rallied around her on social media, raising around €7,000 to renovate the school and buy uniforms, shoes, food, and desks. It's a great project that anyone who wants to learn about and help with needs only to contact her through her Instagram: @naia_aguilar.
Branching patterns are part of an ecosystem which is marked by connectedness and reciprocity as well as by autonomy and self-realisation. Even when one branching cluster appears to end, its function provides another cluster with the capacity to repeat the same process. Yet each cluster pushes toward its own completion as it meets obstacles in the way of the process. For example, a river's streams and tributaries are met by man-made obstacles such as dams, weirs and deforestation, yet rivers circumvent these barriers, sometimes violently, pushing toward their final destination - the ocean. The process therefore speaks to protest as well as reciprocity, and enlivenment as well as intersectionality, for the more streams and tributaries intersect, the more the river widens and the more power it has to overcome the barriers in its way.
My hypothesis is that this entire process illustrates "Exousiance". The better that the obstacles are overcome, the more exousiance an organism - individual or collective - could be said to have. The dynamics of this process provide a contrasting yet parallel purview to state-centred, dominance-focused, rigid definitions of power.
"Developing a view of feminism as one in which humanity and nature live in a reciprocal relationship is a pressing task in the 21st Century." Your Words.
The governments and other institutions of the Global North are way ahead of Africa in creating a palpable sense of urgency with regard to environmental justice and the rights of the natural world to protection. And conservation as a policy is on the front-burner.
What can we do to create a similar awareness and sense of urgency in - let's start from home - Nigeria?
The word "re-enchantment" comes to mind. The dominant mythos is unconscionably fragmented into hierarchies of mind vs matter, humans vs nature, and groups of humans vs other groups of humans. The devaluation of the physical world goes hand in hand with the contempt for inclusivity, pluralism, bodies, nature and matter. To foster awareness, we need rapture for our environment - and you don't achieve rapture through defensiveness or through mythologising the past -- but rather by perceiving how subjectivity emerges from the power of imagination and by writing new mythologies of ourselves as part of a reciprocal ecosystem. Rapture is a state that takes place in the present
Subjectivity, rapture and re-enchantment are states that avoid abstraction. They reveal the material and sensuous actuality of the world as we know it. The playwright, Ntozake Shange, said, 'I found god in myself and I loved her, I loved her deeply'. In a similar sense, we need to find the part of ourselves that is the natural world and love that part deeply. It strikes me that we haven't "found god in ourselves". We don't build society based on the abundance of what divinely surrounds us but rather in scarcity and competitiveness.
I also don't agree that the West is straightforwardly "ahead of Africa in creating a palpable sense of urgency with regard to environmental justice". Environmental justice is not merely a technological and bureaucratic question but also one of scale. In some sense, it is an issue which cannot be evaluated regionally but only globally. And fighting climate change in Europe or America while causing it in another part of the world, as many Western countries do, is not a rational strategy.
There are many significant reasons for the dysfunctional relationship we have with the environment in Nigeria: poverty, corruption, exploitation, ignominy and extraction, to give a few examples, but you only have to look to folktales across the country for evidence that there is a deep love for biodiversity if not in the mainstream then at least in the metanarrative that informs it. This enchantment with the world that we are a part of may be inactive in a technical and political sense, but I believe that it is still alive and can be used to re-enchant and revivify compassion for more than human life.
Finally, as you build a global reputation in feminism and epistemology, tell us a little about your next publication.
Will it be connected to Sensuous Knowledge or will it be a stand-alone?
Thanks for this question. I'm writing a book titled Can Feminism Be African?, which like Sensuous Knowledge is deeply informed by the feminist episteme. My suspicion is that any books I write in the future will in some way be derivative of Sensuous Knowledge, in which I arguably laid out my theory of change (one which of course continues to develop). That said, Can Feminism Be African? is a stand-alone and a different type of book. As the title suggests, it is more provocative and polemical. When I first encountered African feminism, I yearned for a book that fearlessly explored key themes of contemporary African thought in an explicitly feminist way. I have still not found that book and so I'm now writing it.
David Aguilar Biography David Aguilar, born in Andorra, is an inspiring figure known for ...
