I am delighted to welcome Jo Milne, best selling author of Breaking The Silence and Ambassador for Hearing Fund UK to answer some questions for us today.
1. As a child growing up profoundly deaf, what are your happiest and saddest memories of that period?
I was a happy child growing up on Tyneside, my family and those close to me never made me feel any different from anyone else - just to make sure I could see your lips so that I could lipread. Unfortunately the sad times are when others were cruel about my deafness - I was bullied but other children you can forgive - it was the adults that were hurtful. Ridiculing me in front of others when my hearing aid would whistle or make comments I should be in a special school and not mainstreamed with other hearing children.
A young Jo
2. Were your teenage years difficult for you and your family?
They were difficult because we were all faced with this terrible dilemma that despite overcoming my deafness with such confidence - I may have Usher Syndrome which meant losing my sight too. But then this diagnosis was dismissed. No one is at fault as this was 20 years ago, we were not at the stage if medical advancements and genetic testing.
3. As a young adult, were you able to work and what was your first job?
I've always worked, my deafness has never held me back. My first job was as a library assistant in a university followed by a hospital library which led the way to into the charitable sector. I've always been passionate in disability rights - it is the world around us that makes us feel disabled by lack of awareness.
4. You were diagnosed with Usher Syndrome at the age of 29, that must have been a devastating blow on top of being profoundly deaf. Could you tell us what Usher Syndrome is please?
4-6% of people born with a hearing loss have Usher Syndrome. As well as deafness, Retinitis Pigmentosa (RP) develops as a build up of pigment on the retina causes blindness. We live our lives looking through tunnels and unfortunately as it's a progressive condition - the tunnels get smaller.
Usher Syndrome is an extremely challenging disability. Like you say, coming to terms with being deaf then the transition to deafblind. You are faced with many new challenges and it takes incredible guts and determination to carry on. Deaf people can't think of anything worse than going blind as we use our eyes to communicate. Saying that, there are many amazing and positive role models with Usher - fine examples of how we are still very capable of family life, relationships, employment and individual skills with the right support.
5. At the age of 39, you were offered cochlear implant surgery, was this the moment you knew some hearing would be achieved or was there no guarantee it would work?
Like any major surgery, there are risks and no guarantees. I was naive and I thought it would be like turning my hearing aids to a much higher volume. It turns out I didn't know a thing! It was an option of trying to make the best of things, I was struggling being deafblind and I needed something more. To me I needed to take that risk.
6. Like millions of people worldwide, who witnessed you hearing for the first time, can you recall what emotions you felt at being able to hear so many sounds?
It was the most emotional and overwhelming feeling I'd ever experienced - hearing for the very first time. I felt part of a world - being deaf, you tend to be 'cut off' from what's happening around you - and there's nothing wrong with that as it can be quite blissful. I wouldn't have had this operation if it wasn't for my Usher. Its actually made me feel less blind than I was a year ago - because now I have a better sense of things happening around me.
A very moving moment
7. Did the words you learnt through lip reading sound like you thought they would?
No not at all! When the lips stopped moving - I thought sound did too. But to find sound was still lingering after words were spoken took a lot of getting used to. Different accents, different tones to ones voice - it was endless.
8. What are your hobbies?
I'm at my happiest surrounded by friends and family - I love having fun and having get togethers. I love travelling - both in the UK and abroad. I love learning about different cultures and their histories. I like walking in the great British countryside, something I've started to enjoy again since becoming registered blind. Yes I have to be careful and make have to take an easier trail but there's no reason why I can't enjoy it like everyone else.
9. Can you describe a typical day?
I'm an Ambassador for The Hearing Fund UK and at the moment - I'm putting all my energy into fundraising towards my campaign called £1perdeafchild. There's 45,000 deaf children in the UK so my target is £45,000 for which if I'm successful would pay for a speech therapy programme for deaf children. My days are spent organising various events and rallying everyone's support over the next few months - it's hard work but it would be the icing on the cake if I could do this as I really want to give something back.
Jo and Merrill Osmond
It's pretty interesting how life turns out - that youtube clip of me hearing for the first time reached the world famous singing Osmond Family in Utah hence them approaching me to become Ambassador for their charity. I had no idea the reason they got started in the first place was through singing to raise money to buy hearing aids for their two older deaf brothers and were not part of the group. It also goes to show deafness is very common and does touch a lot of families.
10. You are now a best selling author, have you any plans to write another book?
Maybe in a few years. It has been suggested I write a motivational book encouraging people to look on the brighter side but we'll see. Also Breaking the Silence ends only a few months after the switch on and I think a lot of people are genuinely interested in how life has turned out now - there's still so many firsts and life has changed so dramatically.
If one would like to donate £1 - simply text MATD25£1 to 70070.
Thank you so much Jo for a wonderful interview. My members and I wish you, your family and friends all the best. Jo is donating a signed copy of Breaking The Silence as a prize for our raffle. Details will appear on the website soon.