Dumb post to the Stargardts Facebook group

Tony Baechler tony at baechler.net
Tue Apr 9 04:37:12 EDT 2013

I must say that I was surprised by your post, but it made me realize how 
fortunate I have been.  I was born blind, so I didn't have to worry about 
losing my vision.  My mom insisted that I learn Braille in school.  It's 
very disappointing to me how many people don't know Braille and rely 
entirely on speech.  I don't read Braille regularly and prefer audio when 
possible, but knowing how to read Braille helps me to form proper sentences 
and helped me to learn to spell when in school.  I've always been good at 
spelling.  I am sorry to say this, but I can often tell when a blind person 
posts to various lists because they can't spell and don't know how to use 
punctuation.  What's so disappointing to me is that they don't know how 
badly they look to the sighted world and it's usually too late to do much 
about it.  In other words, they either can't or don't want to learn Braille. 
  I was also fortunate to have a good teacher who helped me improve my 
Braille skills.  Just as a recent example, I saw a site which used the word 
"shell" when "shall" was obviously meant.  Simple proofreading would have 
caught it, but with the DECtalk, the two words sound the same.

I think your book idea is not only a good idea, but very necessary.  I see 
books a lot by so-called super blind people.  In other words, yes, they have 
had their challenges, but have learned to adapt to almost anything and now 
have good careers.  Usually they're born blind or lose their vision at a 
young age.  I almost never see people like you in those books.  Of course 
people lose vision all the time, but more focus seems to be on seniors who 
don't really have a career anymore or young adults who can still learn to 
adapt in high school or college.  I don't know how old you are and it 
doesn't really matter, but the point is that you were able to adapt, 
overcome, and move on and you are willing to write about it.  If you could 
get a publisher, that would be great!  Even if you can't, releasing it under 
a CC license would be a good idea.  Other people need to know what's out 
there and they need to get the message.  If nothing else, people need to 
know that there is an accessible alternative to Windows.  Perhaps the AFB or 
APH might be interested, but I think a mainstream publisher and/or site 
would be better.

I knew of a neighbor very similar to what you said.  She long sinced moved 
away now.  She had some vision, but not much.  I don't think she learned 
Braille and as far as I know, eventually gave up on the computer.  She 
volunteered at a preschool sometimes, but pretty much stayed at home and 
read books in audio.  She used to cook more, but I don't think she did 
except the microwave before she moved.  She had "guide" dogs, but they ended 
up being pets and didn't really guide her anywhere.  I don't think she used 
a cane, but I'm not sure.  She was apparently happy, but other than reading 
and talking on the phone, I don't think she did much.  I think she quit the 
preschool as well.  She returned the "guide" dogs because they weren't doing 
what they were supposed to, but she treated them like pets.  She had two of 
them.  Her husband apparently took care of her and they somehow managed.

On 4/8/2013 9:19 AM, Bill Cox wrote:
> Sorry, guys!  If I were fully blind, I would not make mistakes like sending
> that email last night to the SpeakUp group.  I meant it to go to a friend
> who's name started with S, and SpeakUp looks pretty close!  I hope it did
> not offend anyone on the SpeakUp list.  The guys on the Stargardt Facebook
> group could use some prodding to get them to go learn how to use programs
> like SpeakUp, so now and then I make a post like that.  The funny thing is
> I find that people like me with only central vision sometimes have worse
> outcomes than people like most of you, who are fully blind.  You guys all
> learned amazing talents like learning how to use Linux through SpeakUp.
> When people have sight, and slowly lose some of it, the typical situation I
> see is that they don't change or adapt much.  Instead of learning to listen
> at high speed, they simply read less, and stop using computers much.  So, I
> try on the Stargardt list now and then to motivate some of them to get off
> their butts and change their lives to deal with vision loss, but unlike
> becoming fully blind, it's possible to simply ignore central vision loss,
> and never adapt.  I have one good friend who has chosen to remain on
> permanent disability.  When I see blind guys working so hard to have
> careers, it makes me very sad to see these people with Stargardts or
> Macular Degeneration giving up.
> Bill

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