Cerebral Palsy Alliance

Archive for July, 2008

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Telling your story, your way

Having CP, or having it in your family, can be lonely sometimes. There are days when you think nobody else could possibly know what you’re going through. Sharing your story is one of the best ways to connect with others and make those bleaker days a bit more bearable.

Thanks to Web 2.0 and digital storytelling more and more people affected by CP are getting out there and making their voices heard.

You guessed it. Digital storytelling enables you to share your story, your way, using computers and Web 2.0 technologies. All you need is a video camera or some photos, a mic headset to record your narration, some music and a free program like Microsoft’s Photostory 3 or Apple’s iPhoto or iMovie to pull it all together.

Until recently, digital storytelling was mostly used in education as a fun way to teach kids about using computers. Increasingly, like blogs and wikis, digital stories are being used by ordinary folk like you and me to share our daily grind with the world.

No matter how boring you think your daily grind might be, you can stake your house on it that there’s someone out there in cyberspace who’s just waiting to be inspired, comforted or engaged by your CP story. (And if you still need proof, check out the 100 million or so videos uploaded to YouTube each day.)

If you want more info on digital storytelling before you decide to join the fray check out Stories For Change which includes information about United Cerebral Palsy Michigan’s Life In Focus digital storytelling project.

UCP Michigan also has its own YouTube channel where you can watch various Life In Focus videos created by people with CP.

Telling Lives is a great digital storytelling related site and blog from the UK and US site EDUCAUSE also has an interesting podcast called

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Web2Go’s Most Wanted: Free Stuff

Why fork out mega bucks for software when boffins everywhere are getting together to release great stuff for free? This week Web2Go points you in the direction of software that won’t even put a dent in your small change.

We all love a good freebie – me included. When I started using computers regularly for word processing and budgeting – what’s that again? ; ) – I dutifully went out and bought all the recommended software packages. As a Uni student on a Disability Support Pension that was a big financial ask – even though I was entitled to student discounts.

As my Web (2.0) addiction grew, I began to discover one of the techno-savvy world’s best kept secrets – open-source software.

Before I share a few of my freeware and open-source favourites with you, I should clarify some of the differences between shareware, freeware and open-source software.

Shareware is all about trying before you buy. These programs usually let you trial the program for a certain number of days or give you access to a few essential features before asking you to pay up for the privilege of using the fully-fledged program.

Freeware is commercially-produced free (for personal use) software offered by companies in the hope that you’ll love it, tell all your friends about it and buy all of their other not-so-free stuff. AVG Free anti-virus is a good example of this.

Thanks to the pioneers of the Free Software Movement and sites like Sourceforge.net there’s also free open-source software. It’s put together by teams of volunteers and the source or program code is also made available (separately from the stable software versions) so that other wannabe programmers can tinker with it.

So, if you’re looking for a free image editing program you can try Paint.NET, Irfanview or GIMP (That stands for GNU Image Manipulation Program by the way : O ). If audio is more your style, check out Audacity and if you just want something to keep viruses, Trojans, worms and spyware at bay consider AVG Free, Avira AntiVir or Avast Home Edition. A great open-source alternative for creating websites from scratch is Kompozer.

Free MS Office equivalents include OpenOffice.org and Google has a growing range of free web-based word processing and spreadsheet programs which let you collaboratively edit your work via the web.

I could go on forever and a day about free stuff on the Web but that would leave you no time to try it out for yourself! So, go forth, have fun and remember to tell us all about it!

If you’ve stumbled across a really good piece of software that’s not listed here, please share it with us. Alternatively, if you’re suffering from computer-related stress, drop me an email and I’ll see what I can do to help. Remember, Web 2.0 is all about you!

We’re now putting together a more extensive list of links to free stuff and Web 2.0 apps for you to play with and it should be ready in the next few weeks. Stay tuned.

Next week: Telling Your Story, Your Way

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The virtual world is your oyster

Sick of your real life, your real body and your real problems? Now you’ve got more options than ever before to stake out your own corner of cyberspace and get away from it all.

A few days ago Google launched its new virtual reality project called Lively.

It enables you to create your own virtual chat space and avatar online and chat with other people’s avatars. If the chat gets a little boring Lively also lets you invite others to decorate your virtual chat space and they can invite you to decorate theirs.

Read more: The virtual world is your oyster

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A matter of trust: finding accurate information online

Finding accurate and up-to-date medical information on the Internet can be a minefield at the best of times and if a child you know has just been diagnosed with CP, it can be even harder.

As I’ve said in previous posts, the advent of wikis and blogs has turned everyone into an expert. These days you don’t have to wait for your friendly GP or specialist to explain the ins and outs of CP and how it might impact your life. Instead you can jump on the Net and almost instantly Google up a storm.

With roughly 29.7 billion pages of info available on the World Wide Web (as of February 2007), it’s easy to see why this can be a daunting task. What makes the prospect of sifting through hundreds of web pages even less appealing is the possibility that the information you find is inaccurate, exaggerated or just plain old.

Thankfully, there are a few places on the web that offer soundly researched and reviewed medical information such as the Health on the Net Foundation, PubMed, the WRAPIN project and HealthInsite.

Of course for quality information about cerebral palsy you can visit the ‘About CP’ section of The Spastic Centre’s site or you can check out an international site such as the United Cerebral Palsy Research and Education Foundation.

Wherever you choose to start your search, here are a few pointers to help you sort the good websites from the bad and ugly ones.

Does the website show:

details of the organisation information about the organisation’s not-for-profit status the organisation’s aims and purpose the names and professional qualifications of anybody contributing to the website details of an advisory panel or review group?

Websites should also clearly state if they are based on personal experiences or sponsored by commercial organisations. Sites funded by companies may heavily promote certain treatments or products and sites like these often just exist to get you to buy something.

Because disabilities like CP can affect different people in vastly different ways, information based on personal experiences rather than research and scientific evidence can give an unrealistic picture of how CP will affect you and your family.

You also need to check out if a website’s articles include the author’s name, job title and any professional qualifications and, most importantly, the date.

Above all, if the claims made in any web-based articles sound too extreme or sensational to be true, then they most probably are. It’s a good idea to double-check any articles you come across with a doctor, specialist or service provider like The Spastic Centre.

The Web can put you in touch with mountains of advice, information and new ideas. These guidelines will help you sift through the electronic rubble to unearth the bonafide gems.

Share your favourite websites with us!

Thanks to all those Web2Go readers who have sent us their comments. We look forward to receiving more of your feedback and ideas for future posts.

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