How social media platforms became not just my place of support, but my ally
I’d never appreciated the power and the reach of social media platforms. I was never really a fan, even though I scrolled endlessly through Facebook posts of ‘friends’. Instagram was clogged with photos of perfectly filtered faces. All smoke and mirrors and a far cry from the reality of everyday life! Twitter was given a cursory glance and Snapchat made no sense with all its crazy, often offensive, face morphing filters. I found it all a bit of a time waster that I mindlessly engaged in.
That is, until I acquired a facial difference in early 2015 at the age of 53. Hi, my name is Elizabeth Robinson and I am a Facial Paralysis advocate and Facial Differences activist based in Sydney, Australia.
One might think social media is the last place I’d turn to! Why would I want to post my thoughts, let alone a picture of what I erroneously perceived as my once photogenic face, now ‘disfigured’ forever. Why would I want to expose myself to pity, or ridicule or even online bullying? After all, I taught teenagers – I was painfully aware of the negatives and the harm just one misplaced comment could do. I had witnessed amongst my students the cruelty of cyber-bullying, something that didn’t exist in my teenage years, as some people turned into key-pad bullies hiding behind the anonymity of a screen.
But I was feeling isolated and my self-esteem was shattered. So I desperately began searching the internet looking for answers. Would I be able to find medical advice, emotional support, someone, anyone? who could even vaguely relate to how I looked or how I felt? I soon connected on Facebook to a support group for people with the same neurological syndrome that had caused my facial paralysis and loss of hearing. But just as quickly I found myself dragged down by negativity and self-pity as people contended to be the ‘worst’ case. Reading over and over the word ‘disfigured’ in relation to faces (that some people insisted on being the ‘correct terminology’) was affecting my self-esteem. My face was different, but I wasn’t disfigured. The very word was cold and clinical and jarred at my sensibilities. I had never regarded people with a facial difference as disfigured nor as ugly – both words I came to resent with a passion.
Determined to be an agent for change and encouraged by new-found friends with facial differences, I started my own online Facebook support group. So, what changed my mind turning all these platforms into not just my support, but my ally? I found my tribe-that’s what happened. As the group grew into a safe space filled with hope and positivity, meaningful conversations and knowledge exchanges started happening as people shared their lived experiences with facial paralysis and a facial difference. I met many inspiring and amazing courageous warriors across the world. I created an Instagram handle and started proudly sharing my selfies – sans filter, sans make-up. Instagram became a place where I could follow and connect with other disability and facial differences advocates and organisations. My tribe grew to include not just people with facial paralysis, but the larger community of people with facial differences, both from birth or acquired from an illness or accidents. Suddenly opinions on Twitter I not only heard, but they mattered. I became not just an advocate for my syndrome and for facial paralysis, but an activist for people with facial differences. Using social media to my advantage in order to connect, support, educate and spread awareness, not just in Australia but across the world. I embraced my imperfect self – after all, who is perfect? And I have finally understood. True beauty comes from within. A pretty face may fade with age, but a beautiful soul and a loving heart will always shine bright. This is me; this is us – we are warriors, we are beautiful. I encourage everyone to make social media platforms your friend and your ally. Find your tribe – they are out there across the world, just waiting to connect.
NB If you are reading this and have any form of facial paralysis (congenital or acquired), or know someone who does, then follow me on Instagram @facial_paralysis_aus or, ask to join my support group on Facebook – Facial Paralysis Support Network Australia New Zealand World. Look for the butterfly!