Hollie shares her experiences growing up with her dad who is deafblind.

Sight and Hearing loss is more common than you think: Let’s talk about it…

We thought he was a spy. My father could move like a cat. despite his size, despite his disability he moved as if stealth were bred into him. My brother and I used to say that deafblindness was his cover, he was actually a secret agent using the disability to mask the truth: he was an James Bond-esque super spy with the skill to silently enter any room at just the right moment to catch villains and children in the act of committing nefarious deeds!

At home, you would be hard pushed to believe that he is deafblind. He walks with confidence, he knows the path, has the place mapped out in his mind. It isn’t until an unexpected object or an unwary wandering dog enters the equation that things become obvious. We learned very quickly not to leave things lying around. To pick up and move a pair of shoes kicked off carelessly in the middle of the floor, a toy discarded underfoot. We learned to move whatever might prove to be a trip hazard without consciously recognising that we were constantly risk assessing the spaces around us.

Dad has mastered the art of tripping it almost seems to be an art form. He can recover from a misstep in such a way that when you witness it happening your brain can’t quite compute what it has seen. You may suddenly wonder why you started thinking about John Cleese and his Ministry of Silly Walks, but the man’s graceful recovery will leave you almost positive that he didn’t stumble, didn’t catch his foot on the curb, didn’t miss the fact that there was one more step.

It is amazing how people can move around in their own world without thinking twice about others. The socialite walking towards you staring at their phone, the old lady in the supermarket plodding slowly across your path, the child careering around in a fantasy world. We step around them, we let the old lady pass, we avoid stepping on the adventuring child. We see them. We hear them and we react. It is not a selfish instinct that drives the old lady when she gives the big hairy deafblind man a dirty look when he accidentally backs into her stepping back from the shelf. It is not lack of consideration that sends the child bouncing off the shins of the giant as he walks down the street. It’s the assumption that the giant will react.

We don’t talk much about it. We don’t really have to. Sometimes he will say things, matter of fact, honest things that at some time I know he must have agonised over, must have brooded on and cursed his fate and fortune. I know I would have. I remember hearing dad give a demonstration at a school I was volunteering in. He said something I will never forget: “One of the most difficult days I faced was the day I looked up at the night sky and realised I couldn’t see the stars anymore.” Now when I marvel at the beauty of the night sky I have to breathe past the sadness that wells up in me when I remember a tiny girl sitting with her daddy and learning the position of Orion’s belt.  When he says these things, there is no sense of brooding, unfairness or bitterness. Only acceptance.

I have never met anyone like my father. His ability to overcome any hardship, his quiet strength and sheer bloody minded stubbornness to play the hand he has been dealt. To carry on through adversity and carry others through the storm, guide people facing similar darkness, show them that there is a way through, there is light and warmth to be found if you know how to find it. He is incredible. My father is my role model, an inspiration and a wonderful human being. He may have taken my arm for a guide down the road but his example, his inspiration has guided me through life.

Today we share a blog post written by Deafblind UK – A Deafblind Archer’s Story.

John was born deaf and started loosing his sight when he was 19 after being diagnosed with Usher Syndrome. This is a disorder that, among other things, causes the progressive degeneration of the retina. Today he is left with very little sight and no hearing. He communicates through ‘hands on BSL’; a form of British Sign Language which involves the listener placing their hands on top of the communicator’s hands to feel the signs.

However, John, from County Antrim in Northern Ireland, doesn’t let his sight and hearing loss hold him back. With the support of an interpreter he has a wide range of hobbies including tandem cycling, cooking and writing poetry!

But perhaps the most impressive of all is John’s love for archery. He discovered the sport seven years ago and has since become a national champion. “I joined the Causeway Archers and they set up a competition for visually impaired people” said John. “Since then, I have placed in many competitions for visually impaired archers including coming second at the British Blind Indoor Archery Championships.” He continued.

Despite John’s huge success as a visually impaired archer, he longed for the opportunity to meet other people with similar conditions to him. So he joined the Deafblind NI social group in Causeway and loves sharing his stories and experiences with other people. The group meets once a month and John has made many new friends, all of whom share an understanding of what it is like to like with sight and hearing loss. John has taken on the role of chairperson in the Causeway group and he has taught other group members deafblind manual to enable them to communicate with him.

“Being part of the Deafblind NI group means I have the chance to talk to people who experience the same everyday challenges that I do. It is comforting to know that I’m not alone and that Deafblind NI is there to support me in other ways if I need. It also gives me the opportunity to take part in activities and experiences that I would not have otherwise done, like the recent reminiscence therapy workshop that we did.” Explained John.

Lee Bolland, Director of Community Services at Deafblind UK said: “John is an inspiration to us all and we are proud to be able to support him in his archery success. We support people to do the things they want to do without being held back by sight and hearing loss. It’s great to see that he’s found ways to get around his disability and, despite having very little sight or hearing, he has done things that many of us could only dream of!”

Today we share a blog post written by Deafblind UK – A Deafblind Paraclimber’s Story

John from Birmingham was born with a 50% hearing loss and, after being diagnosed with Usher Syndrome Type 2 as a teenager, his sight gradually deteriorated. He is left with just 3% vision which is fragmented with parts missing. He wears two hearing aids and relies a lot on voice and digital equipment as well as his guide dog, Daisy and an army of supportive friends and family.

John doesn’t let his condition get in the way of his love for sports and keeping fit. “I am lucky enough to have a guide runner who lives locally and we run together each week.”

Back in 2010, John’s world changed forever when a friend introduced him to climbing. “I loved it from the very beginning! I immediately wanted to take it further and it wasn’t long before I was invited to join the Great Britain Paraclimbing Team.” Said John.

“I climb with a sighted guide who gives me all the information I need about the route. They will describe the positions of the holds in relation to a clock face, for example “pinch hold at 2 o’clock”. As I wear hearing aids I can use a radio microphone to hear what the guide is saying to me.” Continued John.

In 2015, John realised a dream he could never have imagined and became the first blind person to summit the Eiger. John says that he felt “totally elated” and enjoyed the challenge of not only the climb, but the entire project, including sourcing support, finances and equipment.

John has been reselected for team GB in 2017. National sight and hearing loss charity, Deafblind UK is supporting him by recruiting a specialist volunteer to drive him to climbing centres and to be his Belayer (someone to anchor the end of the rope) and sight guide.

Lee Bolland, Director of Community Services at Deafblind UK said: “John is an inspiration to us all and we are proud to be able to support him in his paraclimbing success. We support people to do the things they want to do without being held back by sight and hearing loss. It’s great to see that he’s found ways to get around his disability and, despite having very little sight or hearing, he has done things that many of us could only dream of!”

It’s Deafblind Awareness Week 2017 and for 5 days Deafblind Scotland and Deafblind UK will produce a blog written by deafblind people and those who are close to them.

Rogan shares the experience of his late wife Emily acquiring deafblindness.

Sight and Hearing loss is more common than you think: Let’s talk about it.

Deafness moved in slowly, imperceptibly.  At sea in the evenings we listened to music and news, short wave interference giving Emily no problems: “my brain corrects the sound and I hear what the music should be”.  Over some four to five years my musician wife complained increasingly of off-tune instruments and singers, finally abandoning the Proms she enjoyed so much. People “mumbled their words”.  Over time music was replaced by her other hobbies-reading, embroidery and letter writing to her worldwide contacts.  Home on leave after eight years, her piano, cello and violin sounded off tune .  Her piano tuner-a friend and a brave man-suggested the fault might be in her hearing.  Followed tests and a diagnosis of “profoundly deaf”.

Blindness was sudden and struck over a weekend.  On Sunday, she could not read the papers.  On Monday, the diagnosis was “partially sighted,” on Tuesday “blind” and on Wednesday she Registered blind and contacted Deafblind Scotland.

Our lives changed forever.

In a difficult and emotional time, Deafblind Scotland gave us the support and encouragement we needed to adapt.

I morphed into a carer.

Amongst many other things, Emily set herself the task of navigating the shopping streets of Glasgow without assistance using memory, with her mobile ready in case of emergency.  In the car, her map reading was replaced by a satellite navigator.  The voice was “Jane”.  Emily did not like Jane, calling her “that woman,” complaining that “there is another woman in this car”.

I knew Emily for almost sixty years, learning to trust her judgement, admiring her adaptability and capacity for hard work.  She faced the potentially catastrophic change in her life with typical courage and determination for over twenty years, leading a full life.

Late Onset Deafblindness with the correct support is not the end of life.  It just feels that way at first.

Rogan is a retired Shipmaster and Naval Reserve Officer and has been associated with Deafblind Scotland since 2001. In 2012 Rogan was appointed as a Director alongside his wife Emily.

This week is Deafblind Awareness Week!

Did you know that sight and hearing loss is more common than you think. Let’s talk about it…

Do you know someone who has the TV turned up far to high, who often asks you to repeat yourself or who doesn’t recognise you if you pass in the street?

Combined sight and hearing loss, particularly milder forms, is more common than we think. With an estimated 394,000 people now considered to be affected by dual sensory loss, it is likely that we know someone affected by this. During Deafblind Awareness Week we encourage you to think about friends and relatives who might be affected by sight and hearing loss and talk to them about it; try to understand what they are going through and learn what you can do to help.

So help us let the world know that sight and hearing loss is more common than you think.

More information on events and activities on our Deafblind Awareness Week webpage.