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Last Updated: Saturday, 13 November, 2004, 00:25 GMT
'I just want to be able to read'
By Jane Elliott
BBC News Health Reporter

Emma Bullin and daughter Paige
Emma used to love reading
Emma Bullin does not like Danielle Steele novels, she prefers to read the classics that are required texts for her English literature degree.

She appreciates that for many Danielle Steele's romantic novels are a necessary form of escapism - they are just not for her.

But unfortunately when she goes to the local library Danielle Steele's books - along with works by Catherine Cookson - are often all that are available in large print and audio.

Last year Emma got a brain tumour and lost most of her sight and with it she lost the right to chose her choice of novels.

Now like three million other people in the UK her choice of books is severely restricted by what is and is not in large print or audio.

Text

Sadly this means that 99% of her course books are not available to her.

"I have managed to get Jane Eyre and Shirley in audio. But I can only get one out of every 20 texts," she said.

Just talking about reading brings tears to my eyes
Emma Bullin

When Emma was in the later stages of pregnancy she started to notice her eye sight was blurring,.

Doctors reassured her that it was probably simply a result of the pregnancy.

Her daughter was in breech position and Emma suffered pre-eclampsia. Paige was born a month early, but Emma's eye sight did not improve.

She was referred for an MRI scan and doctors found a large benign tumour crushing her brain.

"When they first scanned me it was the size of a ten pence piece. When they operated just weeks later it was the size of a satsuma. It was just next to my pituitary gland."

Aids

Emma, who had just started her course at Derby University when her sight was ruined, said she now has many aids to help her study.

She has been given a device to help her enlarge her text, a note taker to assist in lectures and a reader.

But Emma says easy access to the text books in a friendly form would make so much difference to her life.

"I am doing reasonably well. Last year I got B's and B pluses. I am managing, but I really don't know how. I have to just scrape through."

Emma, who is registered blind, says reading used to be one of her greatest pleasures.

"It is devastating for me I was always a book lover. I sat in a book shop last year and I cried.

" I told the shop assistants that all I wanted was one shelf with books I could read.

"But because of this brain tumour I will never be ale to go to a bookstore and browse through books.

Talking Books
The talking book service was originally set up to meet the needs of soldiers blinded in the First World War
The most popular book on the service is "Fenwick House" by Catherine Cookson. She is also the most popular author.
It costs about 2,500 to produce a new RNIB Talking Book
Authors who have narrated their own books include Joyce Grenfel, Roald Dahl, Joanna Lumley and Cherie Blair
Michael Palin recorded his latest book "Himalaya" as an RNIB talking book a month before the printed version

"It absolutely astounds and devastates me that this one little pleasure in my life has been taken away from me because of this brain tumour.

"I want to become a teacher get my degree without having a struggle.

"Just talking about reading brings tears to my eyes. I am surrounded by thousands of books and I'm not able to read any of them! How is that fair?"

Struggle

A new study published by the Royal National Institute of the Blind (RNIB) claims that despite the government ploughing billions into literacy initiatives that people, like Emma, with sight problems are being forgotten.

David Mann, author of the report "Written Off" said: "People with sight problems are able to read and want to read, but face a book famine which the government has consistently failed to address.

"No single government department will even take responsibility for the issue.

"If the government is serious about life long learning and tackling social exclusion they must acknowledge the right to read is a right for all and establish a fund so that more books in different formats can be produced.

"We are calling on the government to set up a task force and to draw up a national plan with bold targets to tackle the unacceptable discrimination faced by millions in the UK."

A DfES spokesperson said: "We fully support the RNIB's aim of tackling discrimination against people with visual impairment.

"The DfES policy is to provide all information in alternative formats where necessary. We are already targeting all available funds and developing specific initiatives to ensure this is addressed."


SEE ALSO:
'Book famine' for blind people
20 Oct 03 |  Scotland
Eye problems 'holding pupils back'
02 Jun 03 |  Education


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