What life is like with no senses

PUBLISHED: 11:26 19 January 2006 | UPDATED: 11:27 04 May 2010

Ben with Nicky Jackson (back) and Jo Johnston at the Hampton headquarters of Deafblind UK. 
Photo: HELEN SOUTH

Ben with Nicky Jackson (back) and Jo Johnston at the Hampton headquarters of Deafblind UK. Photo: HELEN SOUTH

IMAGINE living your life without one of your senses. One could rightly conceive this as a Herculean task. Now try living without two of them. Particularly when the two senses in question are sight and hearing. Chances are you will know somebody who is bli

IMAGINE living your life without one of your senses. One could rightly conceive this as a Herculean task. Now try living without two of them.

Particularly when the two senses in question are sight and hearing.

Chances are you will know somebody who is blind, and possibly someone who is deaf. But someone who suffers from both disabilities? Unlikely.

Yet there are 25,000 deafblind people in the UK, who have to carry on through life saddling the two disabilities. Deafblind UK is the charity which aims to further their cause and improve the lot of sufferers where it can.

It's remarkable how everyday things become the most difficult of challenges for the deafblind person. For many of them, the only way to judge to what level they've filled a cup of tea is to stick their finger in the cup and wait for boiling water to touch it, leaving them with a blister.

Another sufferer put strawberries on his chilli con carne, as opposed to kidney beans. To the able-bodied, this may seem funny, but to a deafblind person, it is frustrating.

The problem is that it can strike any of us down at any time. Sight or hearing can be lost through an accident, a degenerative condition, such as glaucoma, or simply through old age. The same applies to hearing.

There is no fixed pattern for which sense goes first and some conditions, such as Usher's Syndrome, which affects both hearing and sight, are still awaiting a cure.

Deafblind UK's purpose-built headquarters at Hampton, near Peterborough, is committed to raising awareness of what life is like for sufferers.

Jo Johnson, the public relations co-ordinator, and regional fund-raiser Nicky Jackson, have offered to show me around the building to enhance my understanding of the problems the deafblind face.

Firstly, they pop a pair of ear defenders and a blindfold on my head. Whether this is part of the deafblind experience or just some form of kinkiness on their part, I'm not sure.

Anyway, having no sight is debilitating. So much which we take for granted simply disappears. Tunnel vision, too, is a terrible impairment. Seeing the world through such narrow parameters is almost painful. I can't wait to take the glasses off and get a clear view of things again.

The cataract glasses make things all rather blurry. Sight problems are no barrel of laughs, I can assure you. Happily, life is improving for those with impairments.

There are more ways of communicating with people affected than ever before, with the most common being braille, which is perhaps the most widely known, but there is also Moon, a form of embossed shapes read in the same way as braille.

To put things in perspective, Deafblind UK puts out a quarterly newsletter, Open Hand, which comes in 24 different formats. I find this staggering, and it also goes to show that communication can come in many different forms.

Perhaps the most fascinating part of the Hampton office is the Heritage exhibition, a room dedicated to the history of deafblindness. It starts in the fourth century, when Didymus The Blind, an Egyptian scholar, created the first alphabet for the blind.

Louis Braille was responsible for the system we all know today - the first book in braille was published in 1827 - and his system has been adapted to every known language, from Albanian to Zulu.

Things have moved on a great deal since then, but it is unfortunate to note that until the turn of the last century, deafblind people were still being locked in institutions. That still happens in Russia today.

Being deafblind can be expensive, too. A braille computer can cost up to £7,000, while many board games and the like are pricier, as they have to be specially adapted.

But awareness of the issues is growing, little by little. There is even a question on how to identify deafblind people in the driving theory test, after the charity asked for it.

Deafblind people are involved in the charity too - of the 12 board members, 10 are deafblind. Deafblind people were consulted fully when the office was designed, and their is a section at headquarters commemorating their efforts, particularly those of Paralympic swimmer Janice Tillett, who has just joined the organisation as trust officer.

It's an inspiring place.

# To get involved in voluntary work with the organisation, contact Nicky on 01733 358100.

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