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Saturday, November 28, 2009

Writer's Block

First I tried to kill BC but got so many emails of support that I decided to revive it. Of course, since then I think I've only done two or three posts and, for the most part, I am struggling through a period of minimal imagination and lack of interest in the AT biz.

My gonzo alter-egos aren't speaking to me in manner that is conducive to telling their stories. I feel that they are acting more like imaginary friends than sources for gonzo journalism . None have died or anything and I expect something will trigger them to come back.

From the AT world, I pretty much use either VoiceOver on Macintosh OSX or orca on GNU/Linux distros. I have not done much to keep up with the news and have heard few rumors lately.

I have been told that JAWS 11 does a pretty awesome job with relatively complex web 2.0 applications (googledocs and the like) and that the others are working to catch up. I'll give JAWS 11 a test drive one of these days but, for now, I've heard its praises from a number of very credible sources so I'll assume they are correct for now at least.

I guess the biggest rumor from around the campfire is that MS plans on following Apple and building a very usable screen reader into some future Windows 7 update. This would certainly cause a tectonic shift in the way blind people choose to spend their money. It also raises the question of whether MS is buying or building a new screen reader - rumors on this question are all over the map so are probably as much guess as knowledge.

I'm on FaceBook and you can "friend" me using my full name: Chris Hofstader.

I've thought about setting up a twitter account but what good is tweeting if no one listens? If a tweet falls in a forest...

I am collecting a set of pan-disability ideas for technology projects, I think we have blindness well covered but I could use help in most other areas. We hope to post these as "challenges" and try to work with people to get these projects launched through a wide array of different means. If you have any ideas, please send them to me directly and I'll add them to the list for our web site.

Some friends and I are starting a "Bullshit Detector Database" that will contain information about bogus cures for various different causes and symptoms of vision impairment. Way back in my late teens, early twenties, when expert ophthalmologists at great centers of medical knowledge (Massachusetts Eye and Ear, Wilmer Institute at Johns Hopkins, New York Eye, Ear, Nose and Throat and some others) told me that retinitis pigmantosa had no cure and that, eventually, I would lose the rest of my vision. With the desperation of a man who knows he is going to go blind, I chased all sorts of bullshit remedies for my family malady. I spent a huge amount of money on everything from acupuncture to enemas, macrobiotics to herbology and, along with the expense, the crushing emotional side of having hope and watching it get crushed time and time again, not to mention the discomfort some of these procedures caused motivate me to create a space where people with the same desperation I felt back then can go to check out the validity of the claims of the modern version of snake oil salesmen.

If one googles on "cure for retinitis pigmantosa" they will get more than 40,000 hits. The "sponsored links" (about a dozen in the last search I did) were all intended to sell bullshit to people who have lost hope in actual science. These predators will take your money, send you something (nobody entirely knows what may go into these witchy potions) and, when you don't improve, blame you for doing something that invalidated their cure.

Some people will say that the science based medical establishment is conspiring to cover up the offerings of these voodoo doctors because it doesn't fit their model. These naysayers, sadly, do not understand the scientific method nor the process in which claims are reviewed. Anyone who actually presented a cure for RP or, as some claim, blindness in general, would probably win the Nobel Prize for Medicine and make the front cover of virtually all serious scientific publications. Hiding actual cures is fundamentally against how not just science but capitalism itself works.

So, if you've been duped by or have avoided such by doing a bit of actual scientific inquiry, please send me a link so we can make sure the bogus claim you found has made it into our database.

Note: I'm not a database guy and don't really know anything worthwhile about mysql and am relying on other people to help with this part of the web site and would appreciate any volunteers who may also want to help. For now, we're focussing exclusively on bogus cures for blindness but, perhaps, in the future we'll add other disabilities.


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