Dumb post to the Stargardts Facebook group

[Bill Cox]

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


On Mon, Apr 8, 2013 at 7:17 AM, <acollins at icsmail.net> wrote:

> Hi Bill and all.  I think we need to keep in mind that as far as
> blindness is concerned, each of us have different experiences when it
> comes to learning to deal with our blindness.  Some of us get lucky, and
> find ourselves in contact with people who can teach us that blindness is
> not the end of the world.  Others have a more difficult time, and have
> no one who can help shield them against the terrible attitudes that most
> of the world has concerning blindness.  My friend Keith Watson was a
> draftsman engineer, before he slowly began to lose his sight.  Like
> Bill, he fortunately ran in to some of us on the Speakup list, who could
> give him advice about what kind of help was available, and not allow him
> to sit around feeling sorry for himself.  He went back to school, and
> his company moved him over in to their ip department.  He has since gone
> to work for a company monitoring the quality of accessible documents
> they produce for the Social Seccurity Administration.
>
> On the other hand, there are guys like me, who have been blind all my
> life.  I went to the local state school for the blind here in Iowa.
> Then because I was just out of high school, and didn't really know what
> I wanted to do with myself, I attended a one year course at our state
> comission for the blind, where I learned a lot of coping skills and
> attitudes that I didn't pick up when I was in school.  The upshot of it
> all is that I went to tech school, got a job as a machinest, got laid
> off, went to computer school, and got a job in tech support for one of
> our state universities.  I worked as a machinest for ten years, and then
> worked as a tech support consultant for the university for 25 years.
>
> I think it behoves all of us to spread the word that being blind is not
> the end of the world.  Is it sometimes difficult?  Yes, but so is life
> in general.  The glass is either half empty, or half full.  Each of us
> gets to decide individually.
>
> Many others here could tell similar stories.
>
> Gene Collins
>
> >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
> >_______________________________________________
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> >Speakup at linux-speakup.org
> >http://linux-speakup.org/cgi-bin/mailman/listinfo/speakup
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