I am very happy and proud to have reached two milestones:
- Publishing my first book: Holy War for True Democracy – Powered by Passion and Technology
- Launching my first nonprofit: Democracy Guardians (this site)
One noteworthy aspect of these achievements is that I had to do everything only using my eyes. I have advanced ALS. My arms and hands have been too weak for the past year to operate a computer. Instead, I had to buy eye gaze hardware and software (from Tobii-Dynavox, who were lifesavers for me) and practice, practice, practice with eye gaze until I got sufficiently proficient that I could do real work on the computer. I spent a good part of the summer of 2016 practicing. The picture below shows my setup. I am in my wheelchair (with dog in lap) looking at my Microsoft Surface. Attached to the bottom of the display is the eye-tracking hardware. The lower half of the display shows the on-screen keyboard where I look at letters to type (the software offers auto-complete). On the far right of the display are icons to go in and out of text mode, single left-mouse-button click, right-mouse-button click, double-click, drag-drop and a few other things.
In the fall, taking stock of my decline, I asked myself how to make the best of my situation, which could be rephrased as what do I want to do with the rest of my life. That’s a trite expression in many cases, but for me it was a real issue I had to confront since I’m on the road to complete paralysis, tracheotomy with breathing machine, followed by death, all of which might happen in the not too distant future. We all know in the back of our minds that we will leave this life sometime, but in my case mortality stares me right in the face.
Given my physical handicaps and skillset, the two options for future activities were writing and programming. I spent the fall of 2016 thinking about what projects I could undertake in which I could have fun and do something that other people would gain tangible benefit. My grown children encouraged me to write a children’s book modeled after bedtime stories I used to tell them. I also thought about open source programming, but programming is more of a struggle with eye gaze software.
Then, around December 2016, while thinking about a children’s book, I had an epiphany about a non-fiction book (Holy War for True Democracy) and a nonprofit (Democracy Guardians). The two things together were both doable for me using eye gaze and, if successful, would benefit lots of people. I got to work on the book without telling even my wife, mostly because I enjoy surprises. (My wife calls me Puck from Midsummer’s Night Dream.)
In late January I had a first draft, which I announced to my wife and children, who were dutifully surprised and amazed. February, March, April and May were consumed with book rewrites, creating a publication-quality ebook (epub and mobi), creating a publication-quality PDF for hardcopy, working with a designer on a book cover, signing up with Amazon, learning WordPress and Google cloud, building a website with 47 pages, opening a bank account for the nonprofit, setting up a PayPal Donate button and developing a launch plan. It certainly has kept me out of trouble.
The book proposes that Democracy Guardian’s first major initiative be a crowd-sourced Web service that rates the trustworthiness of people and organizations that provide information on government and politics. The crowd-sourced trustworthiness judgments would come from DG members who have taken trustworthiness vows, who have been trained and who have high trustworthiness scores themselves. You can get an overview of the trustworthiness initiative on this page. For the full story, read the book.
All net proceeds from the book go to Democracy Guardians. You can find out more about the book and the nonprofit by exploring the Democracy Guardians website (this site).
Next steps: raise money, recruit volunteers, formalize Democracy Guardians as a proper nonprofit and start prototyping the trustworthiness initiative.
If you’d like to help save and strengthen democracy so that we have true self-government forever:
If you would like to comment, please do so on the Democracy Guardians’ Facebook page (@DemocracyGuardiansOrg) or tweet @DemocracyGuards.