Own the Equinox Kick Off: Outside Looking In
August 23, 2016
by Kate Morell
Okay, it is confession time. Remember the Own the Equinox campaign and Usher Syndrome Awareness Day last year? Yes, the big one. The first one. The important one. You know what I did? Nothing at all. Well, I did watch from the outside looking in. But I confess, I did nothing at all. There. Done. Phew! That’s a load off my shoulders. Thank you for listening.
But … what? Okay. Okay. I really should explain.
Have you heard all this talk about Imposter Syndrome? Something about feeling like a fraud, that your achievements are not real, and you worry about being found out. Yes. All that rubbish. Well, that was me last year, on the outside looking in. I did nothing because I felt like an imposter.
Sure, I had been writing here on this blog for a couple of years, well, off and on. Off when I felt overwhelmed with a sense of ‘who am I to write here on this blog’. And on when the off became unbearable, when Mark would write something that tugged at my heart strings, or racked my mind with guilt. (He is good at that. Very good. Just a few words strung together in sentences, perfectly expressing what I need to hear, and well, what do you know, I am back on with a new post within a few days.)
Sure, I had been writing here on this blog, but it was about something that I didn't even disclose in real life. Being hearing impaired. Being vision impaired. And going blind. Here, I wrote with absolute honestly, but in real life I hid it all. I hid my true self.
Of course, the two worlds were bound to collide at some point. One day, a father of an Usher syndrome child, (yes, I’m looking at you, Mr B) sent me a tweet and said, are you the same Kate that writes for the Coalition … yes. Busted. I then let the two merge (the blogging Kate and the tweeting Kate) but still no one in my real life knew about me. (So few in my real life read what I write.)
Throughout the Own the Equinox campaign, from the outside looking in I watched. Cheering as people ran, walked, rode a-mile-a-day. Admiring as people (insane, if you ask me) ran, walked, rode much, much more than a-mile-a-day. Nodding as people shared their (familiar) stories. Crying as people expressed wise words, love, gratitude and admiration for those with Usher syndrome. Inspired by those who did not hide their true self.
I was on the outside looking in, but it didn’t mean I didn’t belong. It didn’t mean I didn’t care. For me, last year, the best thing I could have done was be on the outside looking in. I saw photos of fathers and mothers, brothers and sisters, sons and daughter, uncles and aunts.
There may be 400,000 or so in the world with Usher syndrome, but last year I had not yet met even one. I was alone on that day. Of ‘my’ special day, I told no one. But I didn’t feel alone.
For me, last year, the best thing was seeing the many faces of people with Usher syndrome. Ordinary faces of ordinary people, going about their ordinary lives.
When it comes to Usher syndrome, and all disabilities for that matter, we tend to only see and hear those who choose to step out and speak up.
Seeing those ordinary faces gave me such joy. I no longer felt guilty about trying to live the most ordinary life I could. That is something I have had to do. I know I am extraordinary, but I need to feel ordinary. And I need to feel as if I am ordinary to others. It made me smile to see that so many others with Usher syndrome seem to need that too.
Seeing those faces showed me that I don’t need to be an elite athlete, or an awareness ambassador, disability activist, published author, or public speaker. And there is nothing wrong with being any of those either. I aspire to be them all. Well, maybe not an elite athlete.
I realized I don’t need to shout to the world, this is what I have, and you should all know about it.
While I may have felt the need to confess that I did nothing at all last year, nothing at all was what I needed to do to arrive at this understanding.
Sometimes, quietly going about our lives is the most meaningful awareness we can bring to Usher syndrome.
I am not an imposter. I am simply living my life.
And now, this year, I am ready to step out and speak up. As an ordinary person. As a mother, daughter, sister, aunt and wife. As a woman who happens to be hearing impaired, vision impaired, and going blind. I am ready to step out and speak up about Usher syndrome. I won’t say it is without fear, without doubt, without hesitation, but this year I will do whatever I can to raise awareness.
This year I will be one of the ordinary faces of ordinary people, going about their ordinary lives with Usher syndrome.
If you, like me last year, are alone on the outside looking in, maybe doing something, maybe doing nothing at all, I will be thinking of you. May you feel some connection, some belonging, and some hope on Usher Syndrome Awareness Day.