Greetings From Planet Moebius


Moebius Syndrome - the rare frontier. These are the musings of an indomitable, eight-fingered, non-smiling and non-smoking individual - me. My continuing mission: to raise awareness about Moebius syndrome; to spread the news that each one of us deep down inside are all the same no matter what we may look like; to boldly joke like no-one has joked before.

As you’ve no doubt just read in the first paragraph - thank you for making it this far - I was born with a rare condition known as Moebius syndrome. What is Moebius syndrome, you ask? In a nutshell, it is the absence or underdevelopment of the 6th and 7th cranial-facial nerves which are responsible for  smiling, frowning etc. So, while it is true that I can’t smile - I also cannot frown. While there is a thing such as  smile surgery - that’s a subject for another blog - there is no such thing as frown surgery. I think this is an oversight. There are quite a few people who I would just love to be able to frown at.


How does it affect me?


Well I can’t smile obviously. But there are a few things that can often accompany Moebius syndrome which myself and many others are also affected by. If Moebius syndrome were a Blu Ray disc then this would be the Bonus Features section.


I was born with -and still have - low muscle tone in my upper arms, which means I can only lift them to a certain height (high fiving is definitely out for me) I have deformed hands. Before various hand surgeries as a child my fingers on my left hand were known as webbed and I was known as Donald. Duck not Trump, thankfully. I was also born with club feet - not such a great club to be at just in case you’re looking for recommendations. My eyes and speech were / are also affected but are for the most part fine now, thank you. There are various other ways in which people with Moebius are affected. To find out more you can click on over to www.manyfacesofmoebiussyndrome.com and www.moebiussyndrome.com


How do you pronounce it?


Because of the rarity of the syndrome I only learned to pronounce it properly upon attending a Moebius syndrome conference at the grand ol age of 29. Up until then I wasn’t really sure if I actually did have Moebius. It is pronounced Mow-Be-Yis. It would make a great name for a gardening service, don’t you think? MOWED BE US. To myself and my family - whose sole reference was a page from a medical book written in thick jargon which no-one could quite understand, not even good ol’ Mom - it had always been MEE-BIS. In fact to this day it still is! Even if we do now know right from wrong.


How do you live with it?


By making like Neil Armstrong and taking one small step at a time. No giant leaps just yet! Seriously though, the hardest part of having Moebius syndrome is usually at the very beginning. While I can’t exactly say it’s all downhill from there, life actually does get a bit easier.


At the point where I am at now I know my capabilities and my limitations. I find the social barriers imposed on people with disabilities by society to be the most challenging aspect of it these days. So while I unfortunately can't change the way I am, the good news is that peoples' perceptions of me CAN be changed.


How do I treat / talk to people who have Moebius syndrome?


Simple. Just approach them and treat them like you would like to be treated. Once you engage them in conversation you will find that they are really no different from anyone else. After awhile you will be able to see past their differences when you see the person instead of the disability. I myself have experienced this when getting to know others with disabilities. We perceive as normal people would of course, not as people with disabilities.


How Can I help?


While there are many ways one can help people with disabilities, which range from donating money to offering employment opportunities, the simplest thing that absolutely anyone can do at very little cost to oneself is to look beyond face value. Instead of judging others solely on outward appearances try to put prejudices aside and look beyond that to see the actual person inside. And this goes for everyone you meet, not just people with disabilities.


We often wonder if there is alien life on other planets, yet we fail to accept and acknowledge the lives of others who are alien to us on our own planet. Let's get to know, understand and appreciate them, our fellow human beings with differences first before we turn our gaze to distant galaxies.

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