Q. Were you ever bullied or victimized because of Moebius?
A. I think I was extremely lucky as a child because that never really happened to me a lot. I can only recall about 3 instances of it happening.
The worst to me was when a group of boys homed in on my hands - to me smiling wasn't even an issue as my hands were the only thing ever noticed - and one in particular started calling me Two Fingers, and the rest sort of joined in. To me that was the worst because it was infront of other kids. If it was just one kid I would've told him to just sod off and that would've been that!
Q. How did you manage to overcome that?
A. I grew up knowing little to nothing about Moebius and sort of made it up as I went along, so I'm not sure if what I did is a surefire way to deal with bullies, (so don't try this at home kids:) but it worked for me at the time.
I am lucky to have been blessed with a sharp wit and am particularly good with words so that became my weapons of choice. When the one kid called me Two Fingers I would tell him that to me he looked like an octopus with all his fingers! So I made fun of him while he was making fun of me Of course the other kids thought it was quite funny, so I started making allies because of it and eventually the ringleader of that little gang of guys left me alone.
I think the fact that I had a good self-image also helped me to stand my ground.
Q. What was it like to discover that there were others with Moebius?
A. It was a surreal experience!
I never spoke about Moebius while growing up as I think trying to explain Moebius to 7 year-olds and you're 7 years old yourself - and don't know much about it - is quite a challenging task!
"Why are your hands like that?" was to me a little bit like "When are the Beatles getting back together?" was for the Beatles! I started off by saying "Because I was born like that." and later changed it to "The crocodile in our swimming pool felt like having finger-snack!" It was a bit easier to grasp I think. Plus it made me look very cool!
On one Friday afternoon when I was about 17 during an English lesson - the one before home time - my English teacher asked me about Moebius. I explained everything that I knew of it to her and the class. That was on a Friday and on the Monday morning she handed me a newspaper article about an Irish girl who was undergoing smile surgery which she had read in the Sunday Times the day before!
Q. What do you hope to achieve by raising awareness about Moebius Syndrome?
A. I believe that it is of utmost important to bring Moebius out of the dark ages. People tend treat anyone who is different to themselves with a fair amount of suspicion, prejuidice and even fear, because they don't know any better. So I think Moebius needs to be demystified a lot more.
Q. What would you say is the best way parents can equip their children for a life with Moebius?
A. I think they should love them unconditionally - as you should love any child - and I think it's important that a child who has Moebius should be taught to have a good self-image and be confident in themselves and their abilities. If they have to deal with the bullies, the name-callers and the prejuidiced they will always have that to fall back on, and what other people may say won't matter all that much.
Q. What do you think has been the greatest obstacle you have had to overcome with regards to having Moebius?
A. I think people who are prejuidiced to me are the greatest obstacle. I haven't overcome it as there are probably lots more out there where the ones I have met so far came from! Sometimes all you need is a chance, to get a foot in the door, that can be difficult while facing prejuidice.
Q. Do you think there is also a positive side to having Moebius, and if so what would it be for you?
A. Absolutely! I believe that having Moebius has given me a certain amount of inner strength, this has helped me in my life as, believe it or not, Moebius hasn't been the toughest challenge I've faced so far in life!
I've also realised over the past few years that I am not someone who gives up easily, and this I attribute to my experience of having Moebius.
I have also met so many fantastic people from around the world who are like family to me now!
Q. What kind of impact do you think Moebius Syndrome Awareness Day has had on society so far?
A. I think it has brought together a global community of people whose lives have been touched by Moebius in one way or another and it has given them a common goal. Wouldn't it be great if the rest of the world could work together like we do?
I think it has given those of us who have Moebius a chance to raise our voices and be heard by society. People who previously never spoke about it are now speaking about it. People who previously didn't even know it existed are now learning about it from the greatest experts of them all - those who have been affected by it. I have a feeling that we ain't seen nothing yet!
Q. How would you like to see it impact the world?
A. To me MSAD isn't just about wearing purple and telling people about Moebius - it's about challenging and changing people's perceptions We can't change ourselves but we can change people's perceptions about us. It certainly won't be an easy task! Ultimately I would like to see the day where people will be able to look passed the Moebius completely and only see the person inside.
A good friend once gave me a book about Martin Luther King. When I read it I was really startled to see parallels between the civil rights movement and the quest for equality within the disabled community. Of course the civil rights campaigners not only won their struggle but the world also gained such heroes as Martin Luther King as well.
I may be thinking big here, but it is my hope that MSAD will showcase the heroes within the Moebius community to the world. I have met so many who have inspired me. The world can never have too many heroes, after all!
eroes, after all!