Miss-Delectable
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CEN News : Features : Being deaf and blind hasn't held me back
Pauline Brown was terrified. Only 16 years old, she'd had a nagging voice in the back of her mind for months. And she just couldn't silence it.
"I kept thinking: 'Am I dying?'," remembers Pauline. "I knew something was going on, but I didn't know what. I was too afraid to approach my parents about it; I didn't want to upset them. So I just kept worrying."
Out of the blue, Pauline's parents had arranged for her to visit the holy town of Lourdes in France; devout Catholics, they sent her on a pilgrimage - with a group of other children, who were critically ill.
"We stayed in a hospital," explains Pauline, who lives in Cambridge. "I met a four-year-old who had leukaemia and a 10-year-old with cancer. I thought: 'These people are seriously ill. So what am I doing here?'"
A long time afterwards, in the midst of doing a school essay, Pauline asked her younger sister to fetch some fresh writing paper from her father's desk. And there, tucked in the middle of the pile, was a letter.
"The words just jumped out at me: 'slowly, but surely, going blind'," says Pauline, her eyes welling with tears at the memory. "I waited until my sisters had gone to bed and then went to my parents and told them what I'd been thinking.
"They were very upset. I made them promise, there and then, not to keep anything from me again. But I was so relieved: I thought: 'It's only my eyes; I'm not going to die after all'."
Pauline has Usher's Syndrome, a rare genetic condition which causes both blindness and hearing loss. Now 57, Pauline has been registered blind for more than 20 years. And her hearing has been impaired since birth.
Doctors discovered Pauline's deafness when she was still a toddler. "My older sister Theresa started nursery when she was four. The staff told my parents they thought she had some hearing loss, because she wasn't communicating very well with the other children," she remembers.
"They took her to the specialist and, as I was so little, took me along too. While I was sitting on my mother's lap, the specialist went behind me and did some things . . . Then he said: 'This one's worse than the other one.'"Fitted with gigantic hearing aids - a large battery box strapped to the stomach, linked to earpieces by a pair of thick wires - she and her sister felt horribly self-conscious.
"Technology has come such a long way since then," says Pauline. "But can you imagine going to school wearing all that? We were at a mainstream primary school and, if we did wear our aids, the boys would make fun.
"So we hardly ever wore them - except when we had to go down to London for speech therapy. Looking back, I must have had some useful residual hearing to have been able to cope, though I think copying from the friend I sat next to helped a lot!"
By the age of 11, doctors were recommending Pauline enrol at a special secondary school, solely for deaf children. But her parents refused and, after wrangling with the local education authority, secured her a place at a local convent. Bright and very sporty, Pauline soon settled in. But, in retrospect, she realises her eyesight was beginning to fail even then. Diagnosed with a progressive disorder, known as retinitis pigmentosa, Pauline's sight loss began with night blindness, then ever-narrowing tunnel vision during the day. Now she can only see through a tiny window, just 10 degrees wide, in the centre of each eye.
"I was very good at hockey; I used to be a right winger," recalls Pauline. "But one day the teacher decided to try out some different people in goal - and I was useless! The ball just kept going straight past me into the net. What I realise now is that, as soon as it passed out of my line of vision, I genuinely couldn't see it."
Then, shortly before doing her GCE exams, Pauline persuaded her dad to take her to the optician. "I knew a girl who had these lovely red-framed glasses and I decided I'd quite like some," she admits, with a laugh. "That's when they noticed something at the back of my eye, and said I should go to the hospital."
A hospital visit duly followed. "They asked me to wait outside while they spoke to my mother," Pauline remembers. "She didn't say a word when we she came out. We just went into town to do some shopping.
"We were in BHS and I saw this beautiful flamingo-coloured sombrero. They were all the fashion then, and I just fell in love with it. And my mother bought it for me! That was very unusual: I had three sisters and we weren't well off. At the back of my mind I thought that was a bit strange . . ."
Unbeknown to Pauline, who grew up in Slough, her parents had been told their teenage daughter would be blind by the age of 30. In view of her pending exams, they chose not to tell her - until she discovered that letter in her father's desk.
Academically very able, Pauline continued to excel at school. And, after completing her A-levels, she went on to train as a primary teacher. It was during her time at college, in Rugby, that Pauline really began to notice deterioration in her sight.
"We used to go to discos," she explains. "But, because of the night blindness, I struggled . . . I remember being chatted up by a fellow one night. We agreed to meet the next evening, but when I arrived I realised I hadn't got a clue what he looked like. I went back to my room and I cried."
Pauline's older sister Theresa had, meanwhile, also been diagnosed with Usher's Syndrome. She started to lose her sight in her early 20s and is now completely blind.
"You have to focus on the positive - on what's possible, and what you can achieve - instead of the negatives," says Pauline. "My sister was engaged when she found out, and she went to give the ring back. But her fiancé said: 'No, we're going to get married,' which they did - and had two daughters, now aged 27 and 25."
Pauline threw herself into work, going on to specialise in teaching children with visual impairments. When she came to Cambridge, in 1981, it was to develop a cutting-edge education support scheme, enabling blind and partially-sighted pupils to stay in mainstream school.
Over the years, Pauline's sight became more and more limited; in the late 1990s, she retired on ill health grounds. But, since then, she's thrown herself into community work, championing people with disabilities.
A trustee of the charity Red2Green, which provides leisure, education and job opportunities for disabled people in Cambridge, Pauline is also a governor of St Laurence Primary and a member of the local planning department's disability consultation panel.
After being mown down by a cyclist near the Grafton Centre, Pauline is passionate about increasing public awareness - and therefore understanding - of people with physical and learning difficulties; she's also part of the city's cycle liaison group.
To help make the most of her limited hearing, Pauline has invested in a microlink, a high-tech device which allows her to tune her hearing aids into a single source of noise - such as one person's voice. As a result, she can hear an impressive amount.
A keen traveller, Pauline is determined to see as many different parts of the world as possible before losing her eyesight altogether; when that will be, she doesn't know. With Nepal, Vietnam, Egypt, Guatemala, Canada, Costa Rica and Zanzibar already under her belt (to name a few), her next expedition will be to New Zealand. Holidaying with Vitalise, a national charity which runs supported trips, Pauline, who particularly loves sailing, relishes every one. "You have someone there specially to support you, so you don't have to feel guilty or that you're a burden," she explains.
"I lead a very busy life," adds Pauline, with a smile. "I felt I was a good role model for the children I taught: it's important to realise that, whatever your circumstances, if you have a positive attitude you can achieve so much."
Pauline Brown was terrified. Only 16 years old, she'd had a nagging voice in the back of her mind for months. And she just couldn't silence it.
"I kept thinking: 'Am I dying?'," remembers Pauline. "I knew something was going on, but I didn't know what. I was too afraid to approach my parents about it; I didn't want to upset them. So I just kept worrying."
Out of the blue, Pauline's parents had arranged for her to visit the holy town of Lourdes in France; devout Catholics, they sent her on a pilgrimage - with a group of other children, who were critically ill.
"We stayed in a hospital," explains Pauline, who lives in Cambridge. "I met a four-year-old who had leukaemia and a 10-year-old with cancer. I thought: 'These people are seriously ill. So what am I doing here?'"
A long time afterwards, in the midst of doing a school essay, Pauline asked her younger sister to fetch some fresh writing paper from her father's desk. And there, tucked in the middle of the pile, was a letter.
"The words just jumped out at me: 'slowly, but surely, going blind'," says Pauline, her eyes welling with tears at the memory. "I waited until my sisters had gone to bed and then went to my parents and told them what I'd been thinking.
"They were very upset. I made them promise, there and then, not to keep anything from me again. But I was so relieved: I thought: 'It's only my eyes; I'm not going to die after all'."
Pauline has Usher's Syndrome, a rare genetic condition which causes both blindness and hearing loss. Now 57, Pauline has been registered blind for more than 20 years. And her hearing has been impaired since birth.
Doctors discovered Pauline's deafness when she was still a toddler. "My older sister Theresa started nursery when she was four. The staff told my parents they thought she had some hearing loss, because she wasn't communicating very well with the other children," she remembers.
"They took her to the specialist and, as I was so little, took me along too. While I was sitting on my mother's lap, the specialist went behind me and did some things . . . Then he said: 'This one's worse than the other one.'"Fitted with gigantic hearing aids - a large battery box strapped to the stomach, linked to earpieces by a pair of thick wires - she and her sister felt horribly self-conscious.
"Technology has come such a long way since then," says Pauline. "But can you imagine going to school wearing all that? We were at a mainstream primary school and, if we did wear our aids, the boys would make fun.
"So we hardly ever wore them - except when we had to go down to London for speech therapy. Looking back, I must have had some useful residual hearing to have been able to cope, though I think copying from the friend I sat next to helped a lot!"
By the age of 11, doctors were recommending Pauline enrol at a special secondary school, solely for deaf children. But her parents refused and, after wrangling with the local education authority, secured her a place at a local convent. Bright and very sporty, Pauline soon settled in. But, in retrospect, she realises her eyesight was beginning to fail even then. Diagnosed with a progressive disorder, known as retinitis pigmentosa, Pauline's sight loss began with night blindness, then ever-narrowing tunnel vision during the day. Now she can only see through a tiny window, just 10 degrees wide, in the centre of each eye.
"I was very good at hockey; I used to be a right winger," recalls Pauline. "But one day the teacher decided to try out some different people in goal - and I was useless! The ball just kept going straight past me into the net. What I realise now is that, as soon as it passed out of my line of vision, I genuinely couldn't see it."
Then, shortly before doing her GCE exams, Pauline persuaded her dad to take her to the optician. "I knew a girl who had these lovely red-framed glasses and I decided I'd quite like some," she admits, with a laugh. "That's when they noticed something at the back of my eye, and said I should go to the hospital."
A hospital visit duly followed. "They asked me to wait outside while they spoke to my mother," Pauline remembers. "She didn't say a word when we she came out. We just went into town to do some shopping.
"We were in BHS and I saw this beautiful flamingo-coloured sombrero. They were all the fashion then, and I just fell in love with it. And my mother bought it for me! That was very unusual: I had three sisters and we weren't well off. At the back of my mind I thought that was a bit strange . . ."
Unbeknown to Pauline, who grew up in Slough, her parents had been told their teenage daughter would be blind by the age of 30. In view of her pending exams, they chose not to tell her - until she discovered that letter in her father's desk.
Academically very able, Pauline continued to excel at school. And, after completing her A-levels, she went on to train as a primary teacher. It was during her time at college, in Rugby, that Pauline really began to notice deterioration in her sight.
"We used to go to discos," she explains. "But, because of the night blindness, I struggled . . . I remember being chatted up by a fellow one night. We agreed to meet the next evening, but when I arrived I realised I hadn't got a clue what he looked like. I went back to my room and I cried."
Pauline's older sister Theresa had, meanwhile, also been diagnosed with Usher's Syndrome. She started to lose her sight in her early 20s and is now completely blind.
"You have to focus on the positive - on what's possible, and what you can achieve - instead of the negatives," says Pauline. "My sister was engaged when she found out, and she went to give the ring back. But her fiancé said: 'No, we're going to get married,' which they did - and had two daughters, now aged 27 and 25."
Pauline threw herself into work, going on to specialise in teaching children with visual impairments. When she came to Cambridge, in 1981, it was to develop a cutting-edge education support scheme, enabling blind and partially-sighted pupils to stay in mainstream school.
Over the years, Pauline's sight became more and more limited; in the late 1990s, she retired on ill health grounds. But, since then, she's thrown herself into community work, championing people with disabilities.
A trustee of the charity Red2Green, which provides leisure, education and job opportunities for disabled people in Cambridge, Pauline is also a governor of St Laurence Primary and a member of the local planning department's disability consultation panel.
After being mown down by a cyclist near the Grafton Centre, Pauline is passionate about increasing public awareness - and therefore understanding - of people with physical and learning difficulties; she's also part of the city's cycle liaison group.
To help make the most of her limited hearing, Pauline has invested in a microlink, a high-tech device which allows her to tune her hearing aids into a single source of noise - such as one person's voice. As a result, she can hear an impressive amount.
A keen traveller, Pauline is determined to see as many different parts of the world as possible before losing her eyesight altogether; when that will be, she doesn't know. With Nepal, Vietnam, Egypt, Guatemala, Canada, Costa Rica and Zanzibar already under her belt (to name a few), her next expedition will be to New Zealand. Holidaying with Vitalise, a national charity which runs supported trips, Pauline, who particularly loves sailing, relishes every one. "You have someone there specially to support you, so you don't have to feel guilty or that you're a burden," she explains.
"I lead a very busy life," adds Pauline, with a smile. "I felt I was a good role model for the children I taught: it's important to realise that, whatever your circumstances, if you have a positive attitude you can achieve so much."