In the post this morning came a magazine called TargetMD, the Muscular Dystrophy Campaign magazine that is 'leading the fight against muscle disease'. I mention this because for reasons best known to themselves they have a story about me, well more specifically, about me and this blog in this issue. It makes up part of a longer article about using the internet, making online friends and social networking. The other two people featured have utilised the power of the world wide web to gather online signatures to support MD campaign`s Building on the Foundations petition and to organise and promote a fundraising gig called Rockability. I'm the more lightweight contributor, since I only write an occasionally humorous blog about myself. On the off-chance that you are not in a position to nip out and pick up a copy of TargetMD I reproduce my section of the article.
In Touch and Online
Internet sites such as Facebook and MySpace have revolutionised the way we communicate, fundraise and campaign. Three Muscular Dystrophy Campaign supporters tell us what they've achieved by going online.
"People in 17 countries read my blog"
Writer and performer Stephen Deal began his online diary, or "blog", in March this year, charting the ups and downs of living with FSH muscular dystrophy. He lives in Surrey with his wife Polly and their two children, Matthew, eight, and Samuel, four.
"I've been a writer and performer of comic sketches for more than 20 years. Previously, I've run a theatre company, named Stripes, and contributed material to books and TV and radio shows. But in the past three years, the progress of my FSH has meant I've found it increasingly hard to use a computer keyboard. Then earlier this year, I bought a tablet PC that allows me to write directly on the screen and automatically turns my scrawl into type. For the first time in years I was able to write fluently again and I was so excited I decided to start a blog. Before, I was commissioned to write about subjects by other people, but at last I can write for fun about what interests me. In the past I've been embarrassed about people calling me 'an inspiration' simply because I have a disability, hence the tongue-in-cheek title of my blog, 'How to be an Inspiration'.
"The primary purpose of the blog is entertainment but it also lets me vent my frustrations and gives me a space to talk about friends and family, saying things that might otherwise go unsaid. I try to add entries every couple of days, depending on what's occurred. So far my most popular post has been, 'You are not taking your disability seriously if…' The answers are things like, 'You have go-faster stripes on your wheelchair' and 'You use your artificial leg as a wine-cooler'. I've always found that people take on board the difficult stuff if it's talked about in an amusing way. I have no illusions that my little blog will change anything but if it makes a few people smile and gives them pause for thought, I'm happy.
"When I started writing the blog it was for myself and an imaginary anonymous audience. I had no idea who, if anyone, would read it. I mentioned it to a few friends but soon found I was getting emails and comments from complete strangers. 'How to be an Inspiration' appears on Google blogger and Disaboom, an American disability website. As far as I can tell, I have around 500 regular readers and about the same again who pop in to read it once or twice each month. Of those, I reckon I know only 30 or so personally. The UK and America are the main sources of readers, but I get readers from at least 17 countries, including India, Pakistan, Brazil and Sweden. I'm not a great one for 'virtual' friendships but I am in fairly regular contact with a few people via my blog, especially in America.
"Writing the blog has put me in touch with a world I barely knew existed – that of disability blogging. I feel plugged in to a vast network of people with a huge range of disabilities and an often perplexing range of attitudes and views. Many of the blogs are very worthy and intense but in among them are some with a lighter touch and fantastic humour.
'Lots of people have asked if I will adapt the material for a book, which is something for the future if I can find a publisher that is interested. And when I last performed I used passages from the blog as part of my act. I'm acutely aware that my condition is constantly changing so I want to get as much done as I can. Basically, I'll carry on writing 'How to be an Inspiration' for as long as I can get my thoughts into type."
Find Stephen's blog at www.howtobeaninspiration.blogspot.com
Let's face it, severe disability is not going to be everyone's first choice of lifestyle, but if that's what you're stuck with then there has to be a funny side. Join me on the ups, downs and sheer bizarreness of life in a wheelchair, a family, and a society determined to make things difficult. Guaranteed to make you smile (and groan). A good read.
Magazine articles about blogging. Seems strange, doesn't it? Like the self-reflective media world has descended on what is pretty much not a self-reflective internet world.
ReplyDeleteAnd, oh, forgot. Good article! It's always a rush to see one's name in print as an author.
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