Health

‘I’m Empowering Deaf People Like Me’

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After a morning’s teasing for being the “teacher’s pet” who always sat at the front of class, 12-year-old Susan Daniels lost her temper. Grabbing hold of her Tupperware lunch box, she threw it at the perpetrator — another 12-year-old pupil — in the middle of the school dining hall.

“I must point out that it was very uncharacteristic and it missed her — thank goodness — but it did hit a vending machine!” she recalls, still with some embarrassment, more than 40 years on.

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Today Susan, now 55, with two daughters of her own, relates the story merely to illustrate that she hasn’t forgotten how frustrating life can be for young people when, like her, they’re profoundly deaf in a room full of hearing people.

“Really I’d have preferred to be sitting at the back of the class, where I’d have been less noticed and less teased, but to keep up in lessons I had to rely on lipreading what the teacher was saying,” she adds.

The incident also explains why she’s so passionate about her job as chief executive officer of the National Deaf Children’s Society (NDCS) which helps 45,000 British families with deaf children overcome barriers every year.

“Deafness is not something I shut the door on at the end of the day. I know how it feels to be deaf because I live and breathe it, every day,” she says.

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It wasn’t just her deafness that earned her the top job for which there was fierce competition though.

Born late in life to doting but forward thinking parents, Susan lost her hearing at the age of four after contracting typhoid on a skiing holiday to Zermatt, Switzerland, in 1963.

“It was a big outbreak at a time when typhoid was a life threatening condition. It wasn’t the typhoid that made me deaf; it was the drugs I was given — but had I not had them, I’d probably have died,” she says.

“All I remember is being told by my parents that I had such a high temperature I was running round the house thinking tigers were after me. I have no memory of ever being able to hear.”

As an only and much wanted child, she knows now her parents were massively traumatized. But because they were such positive people themselves, they refused to let it become an excuse for her not living a fulfilling life.

“They were incredibly can-do people so they were the kind of parents who felt nothing should stand in my way. They just got on with it and their attitude was that so should I,” she adds.

“My father wanted me to excel academically and my mother wanted me to be sporty, partly because she was, and partly because she thought I’d always have someone to play with and wouldn’t be isolated by my deafness. It was a great combination.”

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Fitted with hearing aids to access some sound and having learnt to lipread, she was sent to mainstream school, where she lived up to their high expectations. Despite communication challenges, she went on to obtain a good degree in history and politics at Keele University.

“I had to work very hard,” she admits. “I’d take my own notes by lip reading in lectures but then I’d borrow friends’ notes and copy theirs as well in case I’d missed anything.”

She readily accepts that without the aids like professional note takers or sign language interpreters that are available today, there was an element of guesswork and muddling through which she could not longer get away with in her first job. Working in the office of a freezer food company, the role involved much organizing by telephone.

“It didn’t go very well,” she recalls. “I quickly realized I couldn’t guess my way through telephone conversations. After six months the managing director politely suggested I look for a different job!”

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Leaving vowing she’d never use the telephone again, she went on to teach classes of deaf children and support them in mainstream lessons. She began learning sign language for the first time in her 20s.

It was in this higher education environment, she realized she really had “something to offer” and became “absolutely fascinated” with issues surrounding deafness.

After meeting her long term partner, an architect who’s also deaf, they went on to have their daughters.

“Having deaf parents has been brilliant for them as they’ve had parents who’ve embraced a different way of living. It’s made them great communicators, which has been remarked on at school.”

In 1992, she was appointed to her current role after proving to a panel of 12 interviewers she had the right professional skills and experience to do the job.

Seeing first-hand herself the importance of role models, she recognizes her deafness probably was also an influence.

“Part of the work of the NCDS is to impress that can do approach; empowering families; making them feel anything is possible for their child.”

“Ninety percent of all deaf children are born to hearing parents and some feel so traumatized at diagnosis. Some of the work we do is to introduce them to deaf people. They see them making a success of their lives and then think ‘Ah its going to be okay.”

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Although proud of what she’ s achieved to date — especially the introduction of NHS Newborn Hearing Screening Programme, which means children are now identified within their first few weeks of life, enabling them to access early support, there is still plenty to be done.

“Deafness is not a learning difficulty but at the moment two-thirds of deaf children are not achieving five good GCSEs. The attainment gap has reduced but I want to see it eliminated altogether and deaf children going on to achieve whatever they want to. “

Through better family support and technology and help from the NDCS she believes this is entirely possible. “My parents used to say there is no such word as can’t, so can’t is not in my vocabulary.”

“I have done what I’ve wanted to do. Why shouldn’t others?”

“Deafness is not about hearing the birds sing. As Helen Keller said: Blindness cuts us off from things but deafness cuts us off from people.”

“There is always more work we can do to break down communication barriers and help families. We can’t shut up shop until we’ve done that.”

This post was written by Yours editors. For more, check out our sister site Yours.

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