2013-03-14

Taboo: Nathaniel Newman and Treacher Collins Syndrome

So I got home after a hard day of work and after putting the kids to bed and having a belated dinner I finally hit the couch and turned on the TV to stare at it mindlessly to clear my mind a little and give it some rest. So zapping through the channels I happened to tune in to National Geographic's taboo. The episode today was titled 'ugly'. I haven't been able to find the full episode on nationalgeographic.com yet but it might be available online later.

Let's be honest for a second: We all have our ideas of what is ugly and what not. I know I'm no supermodel and at times I might consider myself ugly. We all know someone we consider 'ugly' or, at least, not attractive. The episode 'ugly' does an excellent job explaining the concept 'ugly' and what reasons one might have to consider someone ugly; across cultures, genders, believes, you name it. NGC describes and shows Ugly, a modeling agency, and describes it as: "... shines a light on beauty prejudices and takes the insult out of the word". I would like to apply that description to this specific episode as well as it applies just as well to the episode as the modeling agency. It beautifully shows that we all have our prejudices and confronts us with that fact.

So as I was watching the show, a section about Nathaniel Newman came by. An eight year old boy, I guess he'll be nine or ten by now, born with Treacher Collins Syndrome. I can go into the specifics about the disorder but the Wiki page will tell you all you'll want to know, and more, about it as will friendlyfaces.org and many more. In short, Treacher Collins syndrome is a condition that affects the development of bones and other tissues of the face.

Nathaniel (pictured here) and his parents Russel and Magdalena are interviewed and tell horrific stories about people ignoring Nathaniel on the playground or even running away. And no, I'm not talking about kids exclusively but also adults here. I do understand, and know from experience that (young) kids might react to their instincts and, as Russel states in the episode, that is, or should at least be taken as, a great teaching moment for parents to take the time and explain to their children that Nathaniel should be treated equally as any other kid.

It was heart shattering hearing Russel tell the story of finding out on an old calendar that Nathaniel's brother had, in some time span like a school year, been invited to twenty-something parties and Nathaniel had been invited to none in that same year. My heart broke when he told they had even met an adult telling Nathaniel "your face is scary". I was dumbstruck at the ignorance of people interacting with Nathaniel and coping with his disorder. And as if everything wasn't depressing enough, it was shown that Nathaniel had, at the time of filming the episode, undergone 20+ surgeries and some 15 more to go in the future. This kid has had a real struggle, from the moment he was born, in life and so much more to overcome each-and-every day. And yet, there he was: an adorable boy captivating my attention.

Newman family
(photo used with permission)
Danu and Luca (left to right)
Nathaniel and his brother, shown above, reminded me of my own two sons also shown above. Nathaniel is dark haired, curly, dark eyed and his brother blonde and appears to be younger and, apart from the fact that Luca doesn't have TCS like Nathaniel does, they could have been a copy from one another. The resemblance struck, although it might just be my imagination.

So in my mind I imagined what I might do if I encountered Nathaniel on a playground. I, honestly, couldn't imagine myself doing anything other than treat him as any other kid and, upon noticing he would be left by himself by other kids, urging my kids to go and find out if he'd be interested to play with them. I'd walk up to him myself and invite him to come play with us. How can anyone not like a kid like Nathaniel? How can anyone be scared by such a boy? I can't begin to imagine what would be missing from, or have gone wrong in, someones education or upbringing to confront such a boy with a phrase like "your face is scary".

During the section about TCS and Nathaniels story I had a real emotional ride; I felt anger towards the ignorant people, I felt deep respect for Russel and Magdalena, I felt compassion for Nathaniel. I had about every known emotion in just under 15 minutes. I was smiling ear-to-ear and giving thumbs up to Nathaniels parents on explaining why they chose to do no more surgeries with the sole goal of reconstructing Nathaniels face to a, what society would call, more 'pleasant face' and only opting for surgery that would improve his life medically (for example improving his breathing, hearing or sight). Go Russel! Go Magdalena! Go Go Go! I was with them all the way. Each and every decision the parents told about they made along the way made perfect sense to me and I kept giving my thumbs-up and smiling as if I was cheering for my favorite team.

And then, Nathaniel. Man, I wish he would live on the same continent so we could 'drop by' some time just to give him a high five and a hug. To let him know how awesome he is and how much I admire him. Somewhere in my search for links, photos and other material to support this blog post I came along the following quote:
"I watched this boy on Taboo: Ugly, and I just cried. I want to hug him (even though that’s probably weird) because he’s lived so much. Some of the things he experienced were familiar, and although he’s gone through some much worse things like surgeries and health problems, he has this attitude that is so mature that I feel so much more respect for this child than 'normal' people in the world.

I think he is blessed to have loving parents, and I definitely hope he overcomes the cruelty that most likely will try to hurt him as he grows. But although the subject of his episode was ugliness, I did not see it. In a personal opinion, although his face is not the norm, those eyes are adorable, his voice, precious. But the reaction from children —and their parents— that was ugly.

As I grow, I'm learning that terms and labels such as ugly and pretty, although they do affect my mood at times, are becoming less important and I just cry, because this sweet, young boy will be outcasted, and he will cry, and he will be hurt, and that this happens all the time to people not on TV.

He said:
"Like I could live in outer space where no one could even be near me."
My heart hurt because, this is a little boy, who in his own young mind, said something so poignant like this, it makes me realize how ugly our society is. As someone who has shared that thought, afraid of other people, i want good things for this boy.

That's all i had to say, I guess. But I have found a young boy I have come to respect."
Not being a native English speaker myself I couldn't have said it more beautiful than this girl (I have to admit I was actually a little amazed she turned out to be only 19, kudo's to you sleepy-sheep and boo for me and yet another prejudice!). All I can do is stand alongside you and wholeheartedly agree with every word you said. I, too, sat on my couch trying very hard to keep my tears from rolling over my face and even now, an hour or so later, I'm struggling to get this post written.

To Russel and Magdalena I would like to say: keep it up! I wish many parents were even half the parents you are! And to Nathaniel I'd like to say: Dear boy, you go son! You are a super-awesome hero and don't let anyone fool you into thinking anything other than that! Our family, my two sons (your "European twins" if you will) included, salute you. Even though this is just text floating around the web I want you to know that we're extending our arms to you and your amazing family for an incredibly big hug. You go have a great life and enjoy every second of it! You have touched me. And I will make sure my sons and the people around my family and me will also get to know your amazing story.

Above is a short abstract of the episode's section on Nathaniel.

Should Nathaniel or anyone knowing how to contact Nathaniel or his family read this: I would love a way to contact them and show my support. Leave a comment and I will contact you for the address or information. I would also like to thank NGC for this inspiring show and this very special episode in particular. And, finally, I would like to point out that the NFFR, the National Foundation for Facial Reconstruction, accepts donations. If this post hasn't convinced you and sleepy sheep's quote hasn't either then watch the above video or Taboo: Ugly episode and then consider a generous donation again.

Permission to use the photo of the Newman family granted by Russel Newman / 2013-03-14.

5 comments:

  1. I saw the story of nathaniel on NGC and soon after seeing i searched on internet about if i can speak or contact to his family or him.I looked in his eyes deeply he has innocence in eyes.I will not pity on anything.I am sure all he has bare medically or have to face next he will achieve all that and face all hurdles and stand in front of everything as mountains.Who not care what people says about mountains they stick on their position with wide chest and courage.He will be like that to those who says wrong things.Also i would like to speak to his family and nathaniel. My name Umar Nawaz.I am 26.Pakistan.

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  2. Last Night, After a tiring session of soccer practice, i was watching taboo late night, i didn't watch the full episode but just from Nathaniel's story......
    To be honest, at first i saw him, i thought that probably some child was wearing a mask or something..... But at the second glance,,,, I was unable to control my tears.... Bielieve me i just wanted to hold him in my arms and kiss him.... He may be Ugly for the world but i see him as the cutest boy in the world.....
    also i would like to salute his parents who beside all odds show that nothing matters other than Him.... I feel pride for his parents..... Respect for his parents and him... From now on he will be in all of my prayers, May GOD bless him.... And I give you my word one day he will turn out to be such a great man that all of humanity will be proud of him... Respect again... Alas, i could get to talk to him.....

    Abdullah Rahat Mehmood, 23, Quetta, Pakistan.

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  3. Un petit garçon plein de courage. Malheureusement la société dans laquelle on vit est tellement cruelle. Il n' est pas moche Nathaniel mais beau et bon à l'intérieur. Je trouve qu'il a une belle famille et je lui souhaite que du bonheur. Je tire mon chapeau à ce petit gua qui ne doit pas faire attention à la mechanceté des autres personnes.

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  4. I just watched the episode & I cried my eyes out, he is a little kid just like any other..its not his fault that he was born that way! I think he gets what is happening to him as he undergoes all the surgeries he is asked to do without even questioning it for once, Kids are immature they wouldn't get it but how come adults say that 'His face is scary' thats inhumane =( I didn't find anything ugly about him, he has such a pure heart & everyone should embrace it & appreciate it! The kid doesn't wants to live in this world, he wants to live in outer space where no one can come near him..thats how much emotionally down he is =( Infact the People who calls him ugly are the only ugly people in here!-_- I just hope he gets better & lives a beautiful & perfectly healthy life without people being mean to him =) Huge respect to Nathaniel & his parents <3

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  5. Dear Mr. Jansen, Newman family,

    I know exactly how that situation is - the problem is not only the idea of what people consider "UGLY" but simply for the fact of being "DIFFERENT". From 2009 to 2011 I was fighting with a school for inclusion. After making them accept by force my son, we started suffering from exclusion and bullying.

    I think the problem starts because people teach their kids that "everybody is equal" instead of teaching that "everybody is different". Medicine nowadays give a life chance for lots of kids that, many years ago, wouldnt be able to live. The development of science was a lot faster than the development of people´s minds - lots of people claim that there is a need of "preparation" to be able to deal with certain situations but they are all wrong - there is no course that prepares a mother to have a special need child or prepares a family to be able to support and love a member that is severe injured and all of a sudden starts needing special care.

    Humanity isn´t so common, its our duty now to TEACH HUMAN BEINGS TO BE HUMANS. Unfortunately our kids suffer with discrimination and we have to teach them to be strong, they are really heroes.

    Discrimination is the result of fear, the different is unknown and represents a threat to the trembler and inexperienced. The individual who values the differences gain in all aspects - in the difference universe the possibilities of choices and exchanges are unlimited. Everyone loses with discrimination: the person who is discriminated loses for not being accepted and the person who discriminates loses the opportunity of enriching himself with the other´s contribution.

    Let´s keep the faith. Sincerly,

    Consuelo Martin (http://to-be-special.blogspot.com.br/)

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