It’s ALS Awareness Month. As per usual, certain advocacy agencies are content with passive website pages and extolling their constituents to do the heavy lifting of spreading the word (a practice that has dramatic fall-off beyond the tiny individual circles of family and close friends). The agencies bleed enough contributions from the constituency to pay salaries and provide token services (with no consistency between Chapters). Meanwhile, The general public is still unaware and uninformed about the deadly lottery that is ALS.
Up until very recently, ALS was a disease of silence. As Person(s) with ALS (PALS) progressed, they lost their abilities to communicate and mingle in their communities. Very quickly they were shut away in homes or hospitals to die in mute angst with a capable mind trapped in an inert body.
With the advent of social media, as well as the technology of mobile computers with eye-tracking input systems and text-to-speech synthesis, PALS are able to compete on an even footing in cyberspace with more physically capable people. Many of these PALS are in serious medical conditions such as near total paralysis with some on mechanical ventilation via tracheotomy. As the astrophysicist and PALS Stephen Hawking said, “My body may be crippled but my mind is free.” Tech-savvy PALS are able to use combinations of technology to dramatically increase their standard of living, to contribute to research about the disease, and even band together to lobby government to speed up access to promising pharmaceuticals. As wonderfully-explained in a recent forbes.com article, “Technology is the cure” (thanks to Steve Saling for coining that phrase).
On a personal note, technology is saving my life. Many years ago my father was in the US Air Force flying support missions for the Apollo moon flights. On occasion I would be in ARIA control watching technicians tending to walls of huge computers. I thought that was the neatest thing ever. Years later, I was blessed to turn a childhood hobby (began when I commandeered my dad’s IBM PC in 1980) into my career, and I now have in front of me more computing power than all the Apollo vehicles combined.
When I was diagnosed, I knew that my ability to communicate was going to disappear. Knowing that hands-free computer technology existed, and already having a long-term presence in “cyberspace”, I knew that I would be able to be social and productive as my physical ability declined. This was paramount in my decision to accept mechanical ventilation. Without the ability for my mind to escape my physical confinement, I would have years ago allowed myself to succumb to ALS. Instead I have remained active and have had the extraordinary privilege to meet and participate in the global ALS Community.
Unsatisfied with the level of advocacy and awareness generated by organizations with that as their claimed mission, PALS in the global ALS Community are taking it upon themselves to increase awareness and advocacy, and are placing pressure on those representative organizations to change old operating procedures. Other organizations representing other medical conditions are very vocal and aggressive in public awareness (the foundation of funding and national priority for research) and this new group of PALS demand commensurate action from the organizations representing them. The new computer technologies, mobile devices with apps, and ubiquitous connection to the Internet and social media allows PALS to congregate, exchange ideas, and mobilize. No longer are they shut away and forgotten.
This month, are aware or are you just a ware for fundraising that does little?