If you ever visit our Facebook page you will know Chris. She’s very knowledgeable about nystagmus – and sight impairment generally and so generous to everyone with her time and support.
Here’s her amazing nystagmus story:
Back in 1973, living at home with my parents, I read in our local paper about a new national organisation for people with partial sight. The founder of the Partially Sighted Society was keen to support parents of visually impaired children. A new local group was looking for members. I just had to do it.
My parents didn’t really want me to join: they wanted me to mix with sighted people after all my days at schools for the partially sighted. But, I was over 21 so I went along. There were a couple of people my age, but, later, a new chap joined. He’d come to work at the local teacher training college. He fitted in well. He had his own home. The rest of us lived with our parents still.
As time went on, we worked at his house setting up everything needed to run the group. Then along came community radio. Our local station set up a community programme, aired every weekday evening. It was 1976, that long hot summer. Mike and I got married towards in the July. My now husband had come to work with trainee teachers as an audio technician. He knew about radio station technology, he knew how to plan lessons so, in effect, he knew how to create radio programmes! We did our first live radio programme together with a few friends.
Over the years I’ve done the occasional interview for local radio as part of the PSS. My real mentor on visual impairment, however, then and now, is BBC Radio 4’s “In Touch” programme and their chief broadcaster since the 1970s, BBC Disability Affairs Correspondent, Peter White. At first I sent in letters, then later emails. My letters were read out, or we read them out down the phone. I was contributing often enough to get myself known. The producer, Cheryl Gabriel, credits me with being in her first programme in the 1990s.
My biggest memory, however, was in the mid-1990s: the internet was everywhere. In Touch had produced an annual handbook in print and other formats for some years and small subject-related guides. At this point I was a parent as well as a volunteer with a, by then, national organisation for parents with disabilities. The In Touch book had a chapter on parenting and was re-written that year. I offered to proof read it, then I read the whole manuscript, because it was there. I was invited to launch the book at that year’s “Sight Village” in Birmingham.
In 2000 our 18 year old sighted daughter got a place on a music production course at the local college. She did a B Tech and then her BA. She wanted to be an audio technician, like her Dad, but she knew Dad wouldn’t be giving up his job till retirement! The peak of the course in the first year was ‘live’ students’ radio on the campus. Hazel was asked if she’d like 6 weeks’ work experience. Today she’s still there as manager!
Proof that one’s daughter has faith in you: over the years I’ve taken in my CDs for World Music programmes. I have a collection of Chinese traditional and folk music. When possible, I’ve used the weekly community show to talk about nystagmus around Nystagmus Awareness Day. I’ve also been interviewed by young people with very complex needs who produce a weekly music show aired on the internet. Hazel was taught to BBC standards, so too are the students she now teaches.
Thanks to Mike’s business (he specialised in classical music, choral and orchestral work as well speech recordings) I’ve been drafted in as a female voice on local radio adverts. The scariest thing ever was wandering into a local supermarket and hearing my own voice scream with frustration (an advert for a local electrical shop about a broken TV at Christmas), or singing softly with our daughter a nursery rhyme to open a recording of a piece of history in a series for schools.
And “In Touch? I was invited to their 40th anniversary and then their 50th. It was a two programme recording and one guest was the actor, Ryan Kelly, who has a role in a long running radio ‘soap’. I was able to ask him a question on air. Since last December, I’ve made 3 more appearances on “In Touch”, two with Mike. I still can’t believe it! I also did one TV programme. Someone on the internet casually asked for ideas for a show about disability. Mike and I are passionate about cooking products and techniques, as visually impaired people. I stayed up late, idly typing lots of ideas and the whole lot was accepted without edit and filmed on a hot spring day in my kitchen. Fun, but hard work. Mike stayed at home to help. I found it hard to know how long to hold a shot before the camera stopped rolling. I’ve not been tempted again.
Had I ever wanted to go into broadcasting? No! With very poor GCEs in maths, English and science, I wasn’t anywhere near ‘A’ level standard. Any job was hard to find in the 1970s, when medicals had to be passed. I was a woman with an obvious sight impairment. I joined my dad on the railway as an audio typist (a common job for the VI man or woman then).
Before I met my husband, he’d started his own recording studio business from home. Despite poor sight, not nystagmus, he was in demand by staff and students to produce LPs of choral music. This was my path while bringing up our daughter and continued until very recently when we decided it was time to retire. My broadcasting and voluntary work has fitted round the business. Amazing, indeed. The broadcasting couldn’t have happened without my husband of nearly 42 years and our lovely daughter’s confidence in us both.
