Presenter: Bernie, ANUK member
My name is Bernie! I’m a Mum of 2 teenage daughters Katie 16, and Abbie-Rose 15, and have a 20 year old son Chris. My husband Marcus and I both have aniridia. I inherited it from my dad, who was the first in his family to have it. 2 of our children – Chris and Abbie-Rose inherited aniridia from me. Our experiences of the condition are unique. My analogy is that we are all like a tube of Smarties. When you tip them out, they all come out in a different pattern, but at the end of the day, we still have the same Smarties in our individual tubes!
The tigress denied she had stripes! At one time I was that tigress! I was a captive, hemmed in by my own fears and misconceptions of how the world saw me – the strange geeky girl with the wobbly
eyes and that funny little telescope she used to read the blackboard with! I yearned to hide in the jungle of life, hoped I’d blend in with my surroundings, but it isn’t that easy being a tigress! You just
can’t help being noticed! But in trying to reject my differences and wanting to hide and “fit in”, I had no idea how much of the amazingly rich jungle of life I was missing out on and that the only Big Cat with the keys to getting out there was me!
Having lost my residual sight at 25, I felt pointless and worthless. jobs I’d done in the past, had been sight reliant so I felt I had no skills to fall back on as a blind person. I thought I’d never work again! Many challenges later, I now have a job as a Technology coordinator for Action for Blind People, which I love, supporting and empowering other visually impaired people to make informed choices and to maintain their independence! During this session, I would like to share with you a tiny sample of my own observations and experiences which have shaped this long and difficult journey.
- Thinking about your skills – you have more than you realise!
- Volunteering: building your confidence.
- The Enabler project (DVD) – tips and advice for getting back into the workplace.
- Technology which can help support sight impaired people in employment and which has transformed my own independence.
Watch out for the tigress! She’s on the loose!
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Aniridia Network 