As someone living with a rare neurological condition, I know how important awareness is. I’ve been witness to the inquisitive stares. I have heard the comments. I have even fallen victim to the bullies of the world and been asked intrusive and downright humiliating questions such as, “is there something wrong with you? Why do you look like that?” Maybe the worst thing that I have experienced are the assumptions of people who have never taken the time to get to know me. They assume that I have a mental disability because of my physical one. I know those people. They speak slow and louder than normal. They talk to the person that I am with instead of talking to me. That in itself can be a humiliating experience.
Having said all of this, maybe you can deduce now why raising awareness is so important to me; it is something that I hold very close to my heart and I try and fill my days with it. I aspire to raise awareness of not only Moebius syndrome, but all other disabilities as well. Advocacy and education are the most important things to me.
If you have read my blog before, or if you know me, you will know that I am a communications major at the University of Calgary. I also have my journalism diploma from SAIT. These are two things that are more prized to me than anything else because I know that I can use my education as catalysts for change.
When I was younger, I was lost. I didn’t know what I wanted and because of having Moebius, I didn’t see myself fitting into this world. I didn’t think I would ever get a job or be anyone. In high school, I started to give up. Why bother, I asked myself. I wasn’t going anywhere anyway. Then, when I was 22, I decided to take a stab in the dark and I applied to the journalism program at SAIT. Those two years completely changed my life. I had people who believed in me and who were there to pick me up when I fell. They encouraged me to keep going every day and they made me believe that I had a chance to be someone and to do something great. They changed my life, and my perspective. Most importantly, they made me believe in myself and they made me believe that I could change the lives of others. I learned how to love, and more importantly, accept myself and my challenges and trepidations.
Since then, I have done many advocacy/awareness campaigns. I held events on Moebius Syndrome Awareness day with the help of my amazing friends. I have written many blogs and tweeted many Tweets, encouraging people to learn about Moebius. I have done many interviews on various news networks and in many magazines. I was even featured in both the SAIT and University of Calgary student run newspapers. The biggest thing that happened to me was appearing in Chatelaine magazine in May of 2016. I still am in awe that I had the opportunity to be featured in a national magazine.
These are some of the things that I have done, but why are they important? Why is awareness of Moebius syndrome so important to me? I could go through life pretending that Moebius doesn’t exist and pretending that I was no different than anyone else. How would that help me? More importantly than that, how would that help others that are in my situation? The answer is that it wouldn’t. I believe that if you are given challenges of any kind in life, you have the power to speak out about whatever those challenges are and to use your voice to create change.
To me, I know that I have the power to make a difference. Even if I educate one person about what Moebius syndrome is, I feel like I have been successful. Why? Because then that one person will have the knowledge that they need. That knowledge will tell them not to judge people who look different than them, because they will know from hearing my story that just because someone looks or sound different doesn’t mean that they need to be treated different. It doesn’t mean that they are mentally disabled. It doesn’t mean that they don’t have just as much potential as “normal” people. Awareness of Moebius syndrome means that one day, people like me won’t feel marginalized. We won’t feel different, we won’t have to bare witness to the stares and comments that seem to follow us wherever we go. Awareness and education mean that society will be more tolerant, more accepting and just generally more informed about not only Moebius syndrome but all other disabilities as well. Regardless of what we look or sound like, we all have things to offer this world and we all want the same things. We want to be accepted, loved and given the same opportunities to succeed as everyone else. I know that I can use my voice, my communications background and my writing to create this change. If I have one goal in this life that I was given, it is to make the world even the slightest bit brighter for those who come after me, and even those who have come before me who still are marginalized. I believe in my heart that this is possible if people are willing to listen and have open hearts and minds.
This is why acceptance and self-love are important to me.
We all have the power to change the world and make it a bit brighter for others.