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Thursday, June 24, 1999 Published at 00:18 GMT 01:18 UK


Health

In a dark, silent world

Mike is marching on Parliament on Thursday

Many people who are both deaf and blind feel isolated in their own homes, according to a report out on Thursday. Mike Jones explains what it is like.

Mike [not his real name] is in his mid-40s and lives in London.

He has had to use two high-powered hearing aids since 1979 and has been registered blind since 1985.

He believes his problems may be linked to a form of a genetic condition called Usher syndrome.

This causes hearing loss and a progressive loss of vision from retinitis pigmentosa.

He says he only noticed his hearing problems when he developed tinnitus after attending discos in the 1970s.

"I am sure the speakers were above government safety levels and I noticed I was particularly sensitive to loud noise," he said.

He has particular problems with background noise and needs a special type of hearing aid.

The loss of vision came gradually. At first, he had difficulty seeing at night. Now he is almost totally blind.

Rehabilitation worker

He worked in administration in the civil service until 1996 and says he feels he was pressurised into resigning on medical grounds.


[ image: Mike says subsidised taxis help him get out]
Mike says subsidised taxis help him get out
"I think the system was not flexible enough to cope with me. I had to be forward-looking and it was going to be increasingly difficult for me.

"I had been trying to find a transfer to another section as you are expected to move on, but it was hard to find a suitable post."

Mike lives with his partner and he also has a rehabilitation worker who visits him once a week to help out with domestic tasks.

He says he is very lucky to live in a part of London which offers good support, but he knows many people who are missing out and are virtually confined to their home.

His council subsidises his taxi trips to visit friends and to go out.

He says this is vital.

"They understand that dual sensory loss is much more stressful than having just one sensory impairment," he said.

Mike uses a white stick when he goes out and also has a special close circuit television (CCTV) which helps him to read by enlarging the print.

But his set is very old and needs replacing.

He is also trying to get someone to visit regularly to read his post as he has recently sprained his wrists and is finding his CCTV almost impossible to handle.

"I feel I am becoming more isolated as a result," he said. "I am going backwards."

Patronising

He says he does not know how long he will still be able to see his CCTV.

He cannot watch television any more because he cannot see the pictures. This makes him feel a bit cut off from the world.

"I have no idea how long I will be able to see the close circuit television. I will just have to cross that bridge when I come to it."

He says some people can be patronising and some call him names. Others try to help, but can overdo it.

Someone recently tried to help him with his shopping by grabbing his hand.

But because of his sprained thumb, they ended up leaving him in excruciating pain and in need of expensive osteopathic care.

"I try to be as independent, optimistic and forward-looking as possible," he said, "but it can be very, very depressing."



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Internet Links


Usher syndrome

Disability Net

Deafblind organisations


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