While I was preparing what to say in this post, this thought popped into my head. It’s interesting to see how the view of disability had changed. I was browsing YouTube when a video got closer to home than one might think, and I will tell you why in a second.
First things first, let me tell you whose story I’m talking about. The video by Truly titled it The Man With The Upside Down Head; I met him as Claudio, the guy my uncle brought on holiday with him from one of his missionary places in Brazil. Claudio’s neck is turned on his back. His condition is arthrogryposis multiplex congenital (AMC), a rare genetic disease that causes joints in the body to become permanently fixed in a bent or straight position.
Like in most cases, doctors thought he wouldn’t make it past the first 24 hours of his life with rare conditions. Something that my parents were told when I was born. Being that I was born three months early. What the doctors didn’t take into consideration is that people like Claudio and myself are born with a fight to live from the start.
Claudio is now 45, and he works as a motivational speaker in Brazil and beyond. Indeed, people that have a hard time when it comes to mobility require help with things like showering and clothing. I believe he has a powerful tool which is his voice and his ability to inspire others. He’s now the president of a non-profit organisation alongside his best friend Adnilson – who he considers his “arms and legs” – that works with vulnerable children, giving them haircuts and clothes and giving them time and resources to play.
Before I go, I want to share something else with you. Last night, I went on social media and reached out to Claudio, and I asked him if he remembers my late uncle. To my surprise, he did and said he misses us all.