Beth Greene: Support is essential after loss of sight and sound

IMAGINE the overwhelming sense of loneliness and isolation and fear, waking one morning to discover your hearing and vision gone – the only sound you hear is a ceaseless buzzing ringing from inside your head. Sounds drastic, but it’s the reality of deafblindness for thousands of people.

There are 10,000 registered deafblind people in Scotland and thousands who have acquired loss. There are thousands of people who slip through the net.

Deafblindness doesn’t mean total loss of both senses but a degree of loss to both. Alarmingly, people over the age of 50 are more likely to suffer dual loss. Ageing contributes to decreasing senses. Loss is often gradual, people themselves don’t realise just how deaf or blind they’ve become, and family, doctors and other professions fail to make the connections. A gradual withdrawal from conversation, difficulty doing simple tasks, giving up hobbies and interests – these and more can be attributed to age instead of deafblindness.

Regardless of age, deafblindness is one of the most isolating disabilities there is. Without some form of communication we can’t function as normal humans.

Some who have retained small amounts of vision use a system called electronic notetaking to participate socially. Notetaking, where someone types conversation into a laptop which then appears in extra large font on another laptop held by the deafblind person, is one option. Another is dual finger manual – it differs from sign language in that it only takes minutes to learn and is quite literally writing individual letters and words hand on to hand.

There’s almost no public awareness of deafblindness and virtually no common right of access accorded to blind or deaf people. It’s an ongoing battle to raise awareness and inform people of the risks. In today’s society, where loud music and endless hours in front of a screen playing computer games is the norm, the potential for long-term acquired sensory damage is extremely high.

Experiencing acquired loss is utterly traumatic in every sense. Phones, mobiles and texting, TV, radio and almost every other object of modern living are useless, but worse is the inability to communicate with people.

I’m deafblind but I’m one of the fortunate ones: I still have a small amount of vision left that enables me to use the computer using large fonts. It allows me to use notetakers and email people when I need assistance, but for many that’s impossible. How long I’ll retain enough vision to do these things is a question no-one can answer. And I’m not alone – thousands of people face the same prospect as me.

Deafblind people live in constant fear of waking one morning to that world of complete silence and darkness, waiting on someone to finger-spell words on to their hand. I should know, I live with that fear.

Awareness and support for what is otherwise a forgotten disability is vital. Learning about the unique problems and learning simple means of communication to break down the barriers of isolation is something we must strive for.

Deafblind Scotland ran a project called Touching Lives. Funded by the Big Lottery, it toured Scotland providing guides and notetakers and encouraging deafblind people to talk to schoolchildren and adults about their experiences. It helped rebuild shattered confidence and made people feel included again. Sadly, the funding ran out and the project has come to an end.

Deaf Action, despite the name, is a fundamental support system to deafblind people like me, offering day-to-day support and help, with the commitment of its various support workers going above and beyond simple working hours. Deaf Action provides counselling which is vital for people dealing with the sense of bereavement from loss of senses. Without Deaf Action’s services I for one couldn’t survive, and with their encouragement and support I’ve learned not to dwell on the future but to think of here and now.

Most people will have a member of their family, particularly an ageing member, who suffers exclusion in some way. Repeating statements over and over to someone who doesn’t seem to understand is annoying and embarrassing for both participants. No-one likes to admit they can’t hear properly or see faces clearly. It’s common to opt out of a conversation altogether. Learning about deafblindness and how to communicate can help lighten the silence and darkness.

• Beth Greene is a former business woman who is now deafblind and works in the voluntary sector teaching communication and deafblind awareness. www.deafblindscotland.org.uk