I MET THE AMERICAN HUNCHBACK AND THIS IS HIS STORY
“Birth defects affects approximately 1 in 25 newborns each year. “
There is nothing more beautiful as a new life itself, the proof that the show goes on, with or without us. The all hopes, dreams and kind expectations are flying on the new creature that should change the course of the world, make it possibly a better place and be a remarkable guardian of our Planet. The little humans are the hearts and souls of parents love and their pure presence is the optimism we all need. Nevertheless, not all babies are born with big, blue eyes, angel faces and chubby bodies, as we use to imagine in our own fairytales. Some of them are born with defects, physical or psychological but they must and should still be loved and cherished.
It is the fact that we live in 21st century but taboos are still very influenced and they can destroy the destiny of those who do not fit the so called social acceptable standards. First, I myself would never accept the social acceptable standard because I do not follow the mass but unfortunately the majority of people are only capable to belong to the crowd because they aren’t enough brave to stand up alone. Now, that brainless mass can pretty much ruin the life of those who are somehow special, different or outside of the “leagues”. We all know what is happening with bullying of the children, even if they are slightly different as the pack. Could you think of painful story of those who are visibly different and noted due to the some features? The urban society doesn’t see their souls and minds but their bodies. The modern people do not try to understand the causes and the situations but rather to judge, make others feel discomfort and embarrassment. The world is very cruel,, cold and unpleasant. That is something what Matthew has experienced the whole his life….known as modern Quasimodo, the Hunchback without Notre Dame, the wild heart that lives through the cracks of reality.
Matthew is 41-years-old man from Omaha, Nebraska. Typical American, who loves baseball, romantic movies and his dog Ralph, the black Labrador. Mat is very supportive, cheerful and caring person with brilliant intelligence, certified with diploma of Phd in mining geology. When you meet Mat, you feel good energy and some new ocean of hope but Matthew life is everything but not easy. As someone who suffers from Goldenhar Syndrome , a rare congenital disorder, that: “is a craniofacial syndrome, which means that it causes certain abnormalities in the formation of the face and head. It is considered a rare disease and a congenital one, meaning it’s present at birth.” The infants targeted with this disease are usually those who had some kind of strange chromosome logic and it is mainly visible on the disproportions on the head area. It is alway individually but it may happen that some newborns do not have developed left ear, eye, jaw or even kidney…..or sometimes it the not completed the process of development in the facial field. Some children have reduced intellectual capabilities while others have disfigured look. Matthew Carpenter was that little baseball fan, tiny boy, who suffers from odd facial expressions, odd because the society refuses to accept that he has his own way of being special.
“I have never met my parents or grandparents. I guess they were ashamed to be around me or connected to me since they believed that my look is their sin. “, says Matt to me in one of our honest communications. “It was just me and my illness. The dream team. No-one else or nothing else didn’t belong to our story. I was alone. The whole my life, in spite of the church efforts to give me foster program or even to support me through the medical treatment. Maybe I had some kind of ironic luck that I did well my medical days and the surgery has helped me a bit, to adapt, to not stand up like a monster, as many have seen in me.”, claims Matt in this narration that made me cry. I am always thinking of all those children like Matt that haven’t been so strong as Matt himself. How they are doing and what they do to survive everyday horror of being not-accepted in the club? How any parent can simply refuse to love that child, only because it is not as all others ? This is the same blood and soul, even if it is body a bit different. The parent love shouldn’t be different, reduced or gone, am I right?
“I didn’t have the real childhood. It was more like a puzzle….you never know what’s gonna happen next. Will you be hit by some of the local bullies or some ordinary mom will bring away their kids from you, if you are too close to them in the Parc, market or on the street. It was almost like in the pest or leprosy time…you have been sick and everyone around you didn’t want you around.”, spouts Matthew, with hope that his story maybe will change something, if anything for other kids from the block, or blocks. I promised him it will and it must. That is why I am here and you are there.
The God or universe loved this boy and have given to him quick mind and sharp thoughts which opened him doors for scholarships and educational assessment. Never loved and accepted the way he is, Matt focused all his energy on learning and improving his chances to be amazing on the labor market. After he managed to make extraordinary research in the mining geology and to come out with prospective analyses, the companies wanted to hire this young man and to steal a bit from his talent for their own profit. Ironically, his look wasn’t important anymore because he could earn money, lots of money:“I must admit, I was honoured with my phd and possibility to work for some of the big players in the mining sector, without being afraid to be refused because I am not handsome and attractive as others. I knew I have something they want and I was their golden chicken. The money I earn enabled me to buy a new house and to adopt my Ralph. The only creature that loves me only because of who I am and not think of my ugliness. I even don’t know if I am ugly. I used to think I am. Not anymore.Money cant be ugly so people like to be with me, if I pay or help them. I don’t need them, as I didn’t need them last 30 years. I just want to be left alone and not judged for something they even don’t know anything about because they are busy to live their perfect lives and superficial relations. I just want to help building another and better world for those like me “- concludes our Matthew, before he jumps into his home gym for a cup of testosterone.
Matthew Carpenter is not the only one modern Quasimodo, there are many out there, crying in their loneliness and craving for acceptance. Some are broken, some are rebuilt but all of them are unique and amazing human beings with capability to love, give and colour the world we know into the rainbow of understanding.
Have you ever asked yourself why are you so afraid of those who are not like you? Why do you push them away or even think that they can infect you ? No, they cant but ignorance is even worse as any disease and primitive manners and aesthetic judgements are nothing but a confirmation of the deep complex and insecurity.
The birth defects are happening around the world due to the many reasons and some of them are primarily genetics while others are caused by environmental damages and ecological deviations. Those things will be more and more if something doesn’t change and if our global common sense doesn’t get active, to prevent rather than to cure.
“I don’t know many good people Sarah. You are one of them. Not because you are writing about me but because you want the world that you don’t have to write about the curious cases like mine is. You want that world to build. I want to help. “, -Matthews words to me and all of us who still believe we can make a world worth of every single molecule of compassion.
Be kind. For Matthew and many more like Matthew.
2 thoughts on “THE MODERN QUASIMODO : PEOPLE BORN WITH SOME DEFECTS”
Sarah’s invaluable and highly-pertinent article reminded me of a boy during my primary school years: his name was Ricky and he had albinism. The other students ostracised and ridiculed him, but I felt it is was wrong to persecute the vulnerable or the different: I have stood by the underdog, always… This is because I myself was an underdog at home.
I was not afraid of the stigma and I became a sort of guardian and friend for Ricky; although, the other students began to laugh at me, etc. This just made me more determined to stand by Ricky. Though, my family left the area when I was seven, and I never knew what became of Ricky, later on… I wish I had kept in touch with him.
In many regions, albinism is a social pariah; especially, in Eastern Africa. East African rituals and spiritual ideas about albinism have led to the brutal attacks on innocent men, women and especially children; even murder. These ideas have been around for millennia, but in recent decades witch doctors have been spreading misconceived ideas about the promise of wealth and power, when albino hair or limbs are used in a potion (claiming the albinos to be ghosts): police force hierarchies claim that these body parts may be sold for as much as US$80,000 on the black market, for a set of arms, legs, ears and genitals from an individual with albinism (2020).
This threat to African albinos has the potential to cause extreme trauma and stress in their daily lives, which are impacted on by the stress of their condition affecting skin and eyesight; placing albinos in a constant state of insecurity and distrust.
Because of the social and educational exclusion which can occur in East Africa, there are very low education levels in albinos, and so that they lack social and economic resources to live fulfilling and protected existences. Also, they grow up with the stigma of ‘lower intelligence’, but this is not correct; for their cerebral abilities possess equal capacity.
Fortunately, some people have established safe environments for some albinos in East Africa, where the children can attend schools with both affected and non-affected children. This protects them from hunters who sell to the witch doctors, also…
Sadly, another myth that imposes a risk on people with albinism is the belief that sexual intercourse with a woman or a girl with albinism can cure HIV/AIDS, and so there are many cases of rape.
Even superstitious miners working in African gold mines use the bones of persons with albinism as amulets or bury them where they are drilling for gold, for protection from accidents.
No country or people can claim to be democratic, civilised and progressive, while such horrors exist within their borders…
Thank you so much, Sarah, for your compassion and lovely heart !
I was raised not to make fun of anyone. Never have I mocked anyone for any reason. Sadly, so many people are cruel and have no sense of empathy, and make fun of people who have congenital/health issues and also of people who are not as smart as they are. It all starts at home. Parents are responsible for teaching their children right from wrong as of a very early age.
An outstanding and educational article, Sarah, and excellent writing as always !