Speaking of reality checks…

My mother has a good friend who has suffered from ALS/Lou Gehrig’s Disease since 1999. There’s an incredible article about Margy and her support group of friends and caregivers that was published in the Washington Post Magazine, July 2005. The article includes photos and dialogue from Margy and her friends about how technology and the Web have enriched Margy’s life since she lost the ability to write in 1999 and the ability to speak not too long afterward. She now has almost no movement and communicates through her computer using only the slightest head nods. I told my mom about this reading and asked how Margy feels about the Web. This is Margy’s reply to my mom via Email:

Eve! The Internet, for someone who has ALS, is a lifeline to the rest of the world. I can’t emphasize that enough. The fact that I can E-mail my family and friends literally keeps me alive. For someone who can’t speak or move, the frustration would be overwhelming without E-mail. The fact that I can shop or read the news is just icing. Communication is everything. I expect that also applies to anyone who can’t speak clearly, like cerebral palsy patients. I feel very fortunate to live in this technological age. I use a program called Words+ EZ Keys, which enables me to use slight head movement to interrupt a sensor in order to choose letters or words. Good luck, Sara!!! Thanks, Eve, for allowing me to give my input.
Xoxo Margy

To me, this is a great testimony to technology, particularly for people with disabilities. I’ve seen Margy use her program to “speak” and Email. Obviously, communicating with loved ones is the most important thing to her, but she can also go shopping, find medical information and basically has the same access to anything as someone without a disability. I Emailed Margy tonight with some additional questions about how she uses the Web. Hopefully her feedback will add more reality to the discussion!

Have a look at the article by Megan Rosenfeld on this blog or on the Post’s site and definitely take time to look at the pictures!

(The magazine-length feature story looks like it wasn’t formatted for the Web, so it may merit printing out for those of us with short attention spans, sore eyes or an armchair and cup of coffee. It’s worthwhile since it’s not only relevent to this week’s module, but it’s also an encouraging story about a beautiful, brave woman and her strong supporting women.)