Deafblindness is a combination of sight and hearing difficulties. Most of what we learn about the world comes through our ears and eyes and people can be born deafblind, or become deafblind, or become deafblind through illness, accident or in older age.
OUr journey is the powerful and compelling account of the experiences of families involved with Sense and Sense Scotland over five decades.

Peter Cheer, Sense's Director of Operational Services:
I am delighted to welcome John and Ann Chapman and Gini Bartlett, who will talk us through the book and invite some of you to do some readings.

John Chapman, co-editor:
The book was the idea of Kate Lockett, who was the Director of Sense East in 2005, and she sat down with her deputy Pat Long to try and find something to commemorate the 25th anniversary of Sense East. Coincidentally, it was also the 50th anniversary of Sense.
They had in mind to record some stories of parents of deafblind people because they realised they have fought so often for recognition of the real needs of their chilren.

Caroline Snelling, reading her late mother Beryl's words:
"Does it seem that long since we thought our world had been shattered by the midwife's words? 'There seems to be something wrong with your baby's eyes, I must call the doctor'. The realisation dawned - our baby was totally blind. How would we cope?

Maureen Murray, Contributing author, mother of Francis and Charlie:
"Charlie was attending a Child and Family Centre before moving to a nursery attached to the school he would eventually attend. At both these establishments he was described as being “odd”. I still object to that term".

Berni Gamble, Contributing author, mother of Joanna:
"Advice from all the professionals and now family and friends too were all saying that it was best for Jo to live in a “Unit” somewhere. I could not accept this and felt that after everything Jo had been through she deserved somewhere really special".

Steve Smith, Contributing author, father of Stephen:
"Through reading and searching literature, which I did at every opportunity, I found some information on SENSE and made contact with them in Birmingham".

Carol Garner, contributing author, mother of Julie:
"You can imagine our relief to discover a handful of other parents out there with similar problems who could offer practical advice and encouragement".

Roy Cox, contributing author, father of Cheryl:
"I noticed they keep doing the same things over and  over with my fingers before they do anything, don’t like it. Think I’ll scream, punch, kick,  bite everyone! I’ve been doing this for years but they won’t give up I’ll humour them and copy what they are doing. Who-o-o-h! Now that’s done it, they are doing it more".

Chris Wilding, Contributing author, mother of Paul:
"And every holiday after that (I was very anxious that he went on them) he came back and to me he had grown".

Matthew Chapman, cousin of Chris Chapman:
"The net result of this is that I am receiving support that is tailored to suit me".

Patricia Dunn, reading on behalf of her mother, Mrs Camillieri:
"Stephen now lives at Gillott Road, in Edgbaston, Birmingham. He is happy there and knows and everyone seems to be fond of him.Of course, Stephen is still severely disabled especially as he has no sight at all and no useful hearing. He is also brain-damaged. However, his quality of life is much, much better than it ever was and Sense has given him the chance to use all his potential".

Rodney Clark, former Sense Chief Executive:
"Other organisations I work with that experience problems ("we just can't get funding for this, it's so difficult to get people to see things our way") and I say softly - it's such a shame that you don't have active parents, isn't it" [ laughter ]

Ann Chapman, Co-editor:
"We have introduced the book to so many people and will go on doing so. We hope everyone here today will value the book and be able to demonstrate to authorities how much progress has been made by Sense for deafblind people. 

Gill Morbey, Sense Chief Executive:
"One of the themes running through the book is how much we have learned from our children and we've talked about where would we be without Sense, but actually as individuals I wonder where we would be without our children."

Mary Holman, Contributing author, mother of Richard:
"Sense has always been a family organisation. It has always had family members at its heart, and what we need to do is to make sure that that continues".

Rosemary Sutcliffe, Contributing author, mother of Susie:
"You can well understand how grateful we are to Sense. Long may they continue".

Gini Bartlett, Co-editor:
"I hope you all agree with me that this has been a really fantastic event. [ applause ]