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Dr Barbara Knowles on the honour and how she copes with incurable illness
SENIOR Science Policy Adviser Dr Barbara Knowles was made a Member of the British Empire in the New Year's Honours list for her services to science communication and the environment.
Dr Knowles, 52, who lives in Prettygate, Colchester, has had a distinguished career with particular expertise in communicating science to non-scientists.
A Cambridge University graduate, she is currently senior science policy adviser to the Society of Biology and has previously been assistant director with Science in Society and deputy head of communications at the Natural Environment Research Council.
She has also supported projects on meadow ecology, rural development and traditional agriculture in Transylvania.
Dr Knowles was married to Gareth Evans who died in 2006. Five years ago, she was diagnosed with the incurable illness Motor Neurone Disease.
She is now unable to move and will soon lose the ability to speak but through a computer, she told us about her life.
* What has been the highlight of your career?
I’ve been fortunate to do several interesting jobs with many highlights. I’ll mention three. Organizing conferences at the European Parliament to highlight the value of the amazingly beautiful and vulnerable flower-rich mountain meadows of Europe and how threatened they are by farming policies and globalization which make it almost impossible for farming families to continue managing them.
Writing a speech for the science minister in my first week in a new job and watching him deliver it in the House of Lords.
Helping to create the Natural Capital Initiative to improve knowledge of the benefits that nature gives to our society and economy. This is an initiative to bring scientists and policy makers together. I’m proud to be one of its ‘parents’.
* I am guessing you have met some interesting people and visited many countries. Could you tell us about a few of them?
I’ve travelled a lot and nowhere is more special to me than Romania. I’m privileged to work there as a volunteer in Transylvania – a region of outstanding natural beauty, cultural richness and generous, hospitable people whom we should be glad to welcome to Britain.
I’ve met so many inspiring people there who work to protect its natural and cultural treasures. I was delighted to introduce Prince Charles to some of them when he visited me and my friend and colleague Rodics Gergely in 2011 to learn about our work at the Pogány-havas Association.
* You have Motor Neurone Disease. What were the first symptoms and when were you diagnosed with the illness?
It’s a hard disease to diagnose and starts differently in different people. In my case it began with leg cramps and was diagnosed two years later in 2008.
* How has it progressed and how have you coped?
I’m one of the lucky ten per cent of people still alive over five years after diagnosis. It’s a relentless, incurable condition that gets steadily worse. I can hardly move or speak. I need help with everything a healthy person takes for granted: eating, washing, going anywhere. I can’t even scratch an itch. But I’m a biologist, a scientist with a passion for nature. I’ve always worked with ideas. MND can’t stop that. So with the help of a computer and fantastic colleagues at the Society of Biology in London and Pogány-havas Association in Transylvania I can keep busy doing work that I love. I research and compile a weekly newsletter about science policy for biologists in Britain. I’m a mentor, fundraiser and enthusiastic participant in work to protect and understand the outstanding environment created and managed by traditional farming in Romania. I’m really motivated doing this work. It keeps me positive and happy. I believe this happiness keeps me physically better for longer too.
* You have been recognised for science communication. How do you now communicate, given the nature of your illness?
I can’t talk easily or go to meetings in London any more but computer and communications technology gets better and cheaper all the time. I work from home, control my laptop and phone with a reflective dot on my forehead that operates a virtual mouse. With this headmouse I can do everything on the computer that you can do. I read, write, email, listen to the radio, use the internet, send text messages.
* How are you now?
I’m feeling great and looking forward to new challenges in the new year.
* What did you think when you heard you have been made a Member of the British Empire?
I was really delighted. My mother is proud, of course, my friends and family and colleagues are excited. And it’s a great opportunity to tell other people about my work and show that it’s possible to achieve a lot despite severe disability.
* What do you consider to be your most important life’s work?
Raising local and international awareness of the significance, value and vulnerability of the mountain hay meadows of Romania. If I could ensure their survival by giving traditional farmers the opportunity to sell their meadow produce at a fair price that recognizes the true worth of their work for society and the environment and allows them to compete with subsidized industrial farming, I would really have achieved something great.
* For more information about Barbara’s work in Romania: www.treasuresoftransylvania.org
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