Blind courage pays off for sisters

by GILL JONES, Daily Mail

When actress Kate Lee and her partner Brian Southwood realised their daughters had a degenerative genetic eye disorder they launched a long battle to get them into mainstream education. Here Kate reveals how her determination paid off.

The day I woke up and accepted I would have to fight for my daughters' futures is one I'll always remember. Years later, I realised I did so just in time.

It was 1989 and we had come home from special school when Eleanor, my elder daughter who was then seven, put her head in her hands and screamed: 'Someone in my class asked what a magnet was 15 times in science today.'

There were six other children in her class: one was brain damaged, one was autistic and two had learning difficulties.

Eleanor was born in March 1982 and we always knew she was bright. Even at five or six weeks old she was incredibly responsive to everything around her.

But it was at about that time that I noticed her focus wasn't developing as it should.

She watched things in a little circle around her but when I moved away, her eyes stopped following me. At the clinic, they told me her eyes were normal and to stop worrying.

She was a few months old before it became obvious that they weren't. Other people started to notice, too, saying: 'Eleanor, look at me,' and finding she couldn't.

So I stormed off to the clinic again and demanded to see the paediatrician. The doctor took one look and said: 'Well, she's not completely blind, but she has got serious problems.'

Ellie was then tested for brain damage, but I knew from my own tests she was acutely aware and ahead in all the co-ordination tests.

We later discovered the girls have Leber's amaurosis. This means there is no outward evidence of damage but the retina doesn't form properly.

The condition is light sensitive, so both girls are completely blind in daylight - twilight is their favourite time of day - and they don't see colour.

Her sight impairment certainly did not put us off having another baby. We discussed it fully when I discovered I was pregnant again at the end of 1983.

What was frustrating was that we couldn't get a diagnosis for Matilda after her birth in July 1984, even though we could tell that she

had the same eye problem.

When Eleanor was four, she started going to a special school for the visually impaired. Matilda followed at three when she started a nursery placement there.

Though it was fine at first and they made some progress, the school started taking children with a range of disabilities.

I became stressed trying to convince the governors to do something.

At one meeting, someone from the Royal National Institute for the Blind asked the head if any of the children could manage in a mainstream school and be academically successful, but he said 'No'. I've never forgotten that, or forgiven him.

I knew my daughters were bright, so I spent months trying to get them into a mainstream school in London, without success.

Then my sister sent me an article about how a Derbyshire education authority was integrating blind children with Braille skills, with staff to support them.

We visited one of the schools there and then decided to move, as we knew it would give our girls the best chance of a good education.

When the children started at the Derbyshire school in the autumn of 1989, socially, Eleanor, who was then seven-and-a-half, dived straight in. Matilda is much quieter and found it scary at first, but she has grown to be self-assured.

We also had to fight the education authority to allow the girls to go to the local comprehensive, instead of a secondary school which had a support facility for visually impaired children but not a good academic record.

Luckily, the head of our preferred school supported us and the RNIB had a good family support system with people trained in advocacy, so we won.

Eleanor became the first registered blind child to attend the school. She was given a special teacher for two-and-a-half days a week, as well as a classroom assistant. Matilda followed when she was 11.

The girls did their exams in separate rooms on laptop computers with speech output, and had extra time because Braille takes longer to scan through for things such as quotes.

When Eleanor was offered her university place, I wanted to phone the head of that special school and say: 'Hey, she's got into Oxford.


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