WRITER: CARLY FINDLAY
I recently went to England to speak at a conference about appearance. I also met a young boy with the same condition as I have.
FULL STORY AT THIS WONDERFUL BLOG! :http://carlyfindlay.blogspot.com.au/
Today was a very important day of my trip, and perhaps of my life. I met little Jack Oldacres and his parents Julie and Danny. We have been chatting on Facebook since Jack was a baby, and today they made their way to London to meet me. It was such a lovely day - I truly think we have formed a wonderful friendship.
Jack and his parents do amazing work raising both awareness about the condiition and money for Netherton's Syndrome research. Jack's parents had cards made with information about Netherton's Syndrome so that when people stare and ask questions, they can easily be informed. Today a number of people stopped to ask questions or rudely stare and comment, and Julie and Danny handed out cards. Jack was so cute in posting his card through the money slot in the taxi cab. In Jack's short life, Julie and Danny have worked with the community and the media to raise over £16,000 which goes directly to the research laboratories to help people like Jack and I Improve and cope with the medical side of Netherton's Syndrome. A bloody awesome effort, especially considering they both have jobs and the challenges of caring for Jack. You can read all about their work raising awareness and funds and Jack's story here.
A positive feedback cycle, however, is the opposite. Person with visible difference assumes the best intentions of society, sends out positive vibes by smiling, interacting willingly and positively and making eye contact and conversation. Society sees the positivity in that person with a visible difference, and their perception of that person is altered - they still may be curious about their looks, but also see the positivity and willingness to interact. And so positive cycle continues.
I think I am a positivity cyclist. Hell, it is the only cycling I do! But life is so much easier when I react positively to people. By simply making conversation, being cheerful and talking to people about my appearance, I receive a better reaction than when I have shut off. I also think Jack Oldacres is a positivity cyclist too. So are his parents. Danny told me that when people stare and point at Jack, he waves to them and smiles, and says those starers are his friends. How beautiful - there is a lesson in that for all of us.
I had a fantastic day and feel richer having met Jack, Julie and Danny. I am quite reluctant to participate heavily in ichthyosis support groups due to the negativity and competition I have experienced. I am so glad I met the Oldacres family - they said to me a religious worker at the hospital told them it is often very special people who are given a gift of a child with a disability, as God - whoever he/she is - knows they can cope. And from meeting Julie and Danny today, and reflecting on my own parents and the brilliant job they did with me (with such limited support when they were brand new to Australia), I wholeheartedly agree.
Jack is beautiful, strong, friendly and outgoing, smart, funny and determined. I came away from today's meeting feeling so fulfilled. I know that we have helped each other. I also felt emotional too - there was so much empathy shared, and I knew I didn't have to prove myself. Julie and Danny were so proud to tell people that today's meeting was a once in a lifetime experience between two people with very rare skin conditions. It felt like family.