I just posted the following to the Stargardts group on Facebook in response to a post from a kid who was asked to write about what it's like to go blind, for a publication in Canada. She posted her opening, and asked what we thought of it. I found it wanting. She said she could not see the professor's face. This is what I said: For the first two years, I lived in denial. Losing central vision meant losing my job, my house, and the ability to raise my kids. It paralyzed me with fear, and threatened everything I cared about. Yet I was lucky. Losing sight meant losing my ability to program, which is the skill that has defined my value to the world. I found a blind mentor who showed me that it is possible for the blind to be outstanding programmers. I began to contribute to software for the blind. I worked so hard at improving such software, that I sat too long at my computer and gave myself blood clots, which moved to my lungs and came close to killing me. Still, I was lucky. What is it like to slowly go blind? The world crashes down around you and you fight dragons every day to stay alive. That's if you're lucky, like me. For the rest, possibly the majority, I fear it may be far worse. I was lucky in that I had the chance to build something I cared about desperately before losing central vision. It gave me the will to overcome the obstacles. What is it like for kids losing vision while going to college? That's what really breaks my heart. They don't yet know what is worth fighting for. Not seeing the professor is no big deal. How many of you people out there with Stargartds have learned speed listening? Do you know the potential you have, and the value of the life you will lose if you don't fight for it? I'm lucky, because I got to build that life before losing vision. I grieve for all the kids who will never get the chance to know why they should fight so hard. I don't think any of the kids out there with Stargardt's will suddenly change their lives because of my post, but you guys, and especially Sina, have changed my life. Thanks for showing me that my central vision impairment need not cripple me, and for the chance to help write the software I need. I am using Speech Hub, Mary TTS, and NVDA just to write this email. Working together, we can build great tools like Speech Hub, and great organizations like the Accessible Computing Foundation. We can make a difference one vision impaired guy at a time, or at least try like Hell. Bill
