[nabs-l] curing blindness
Sophie Trist
sweetpeareader at gmail.com
Mon Oct 1 01:33:06 UTC 2012
Laurel, I'm not trying to be a hater or anything. I respect your
opinion even if I don't agree with it. But if you're still going
to use blindness-related skills and technology and are not doing
it for social reasons, then what's the point of getting some of
your vision back? To me, it seems like more of a hindrance than a
help, particularly in mental and psychological areas.
----- Original Message -----
From: Laurel <laurel.stockard at gmail.com
To: National Association of Blind Students mailing list
<nabs-l at nfbnet.org
Date sent: Sun, 30 Sep 2012 19:59:59 -0500
Subject: Re: [nabs-l] curing blindness
Ok. Y'all might kill me for saying this, but you wanted our
thoughts
on the matter, so here goes.
I am blind from birth, have an artificial left eye and see only
light/dark and colors and some shapes and movement in my right
eye. I
read braille and all. If I had the chance to use some form of
medical
technology that would improve my vision, even a little but, I'd
take
it. While I am extremely comfortable with my identity as a blind
woman, and while I realize that I may never get 20/20 vision, I
would
be willing to do anything that would improve my vision slightly.
I
realize I may be in the minority in this group, and that most
people
might not agree with me, but those are my thoughts. I must also
say
that even if my vision improved a little bit, but not very much,
I
would not stop using a guide dog or some form of mobility aid
like
this gentlemen is doing. I would still utilize any mobility aids
that
I would need in order to be safe, and I would still utilize any
blindness related technology, braille, jaws etc, that I might
need.
I'm not interested in passing off as a sighted person either and
I
realize that with improved vision goes many challenges. I'm not
even
trying to argue with that. I'm for being safe and all. All I am
saying, is that if I had the chance to do something that would
help
improve my vision, even if it only improved like by 5 percent or
so,
I'd strongly consider doing it. Anything helps.
Just my opinion, I totally understand those of you who would
disagree
with me. Each man to his own. /smile/
Laurel
On 9/30/12, Gerardo Corripio <gera1027 at gmail.com> wrote:
Sure! These foundations only care about money money money; not
only
that: they use the psychological of pity to get people to
donate.
El 30/09/2012 07:23 p.m., Chris Nusbaum escribió:
Hi Arielle,
I agree with you completely, and couldn't have said it better! I
also
think
it depends on how long you have been blind. I have been totally
blind
since
birth, meaning that living without sight is the only life I have
ever
known.
Therefore, if I were to suddenly regain my vision, it would be
sensory
overload for me. This is why when people tell me that they can't
imagine
being blind, I reply that I can't imagine being sighted.
Because I have never had sight, I don't know what it is like to
see. I
can't
imagine travelling without a cane. I don't know how I would do
things
around
the house or at school visually. The first few times I would try
to use a
computer or an iOS device visually, I would probably keep using
the JAWS
keystrokes and VoiceOver gestures, then get frustrated wondering
why the
heck these keystrokes and gestures I had been using for so long
were not
working anymore.<Smile> I would need to learn how to read and
write
print,
which would probably take me a very long time. This is the same
situation
that some blind people face when they suddenly lose all or a
large part
of
their usable vision and are forced to learn Braille. The only
print I
know
right now is the letters of my name, but even that is cursive.
On the
other
hand, I can read Braille at 170 words per minute and can easily
keep up
with
my sighted classmates when reading material, provided that that
material
is
in Braille or an electronic Braille format, such as a BRF book
from
Bookshare. If I suddenly regained my vision, I would have to go
back to
the
preschool or kindergarten level and relearn how to read and
write. How
would
this effect my academic success in high school? I would think it
would
adversely effect it. Even now, as I am trying to imagine the
sense of
sight,
I can't wrap my head around it. If this makes sense, I don't
know what
seeing is. This is because I have never had sight and have
gotten used to
blindness.
I would be interested, though, to do a survey similar to the one
you did
for
your thesis and compare the answers of blind people who have
been blind
since birth to those of people who went blind in early childhood
to those
of
people who went blind as adults. I would predict that those of
us who
were
born blind would have answers similar to mine. Conversely, I
would think
that some of the people who lost their sight in early childhood
as well
as
most of the people who went blind in adulthood would take the
imagined
"magic pill" or use the artificial vision. I think this is
because they
have
experienced sight and know what it's like to see, and would
probably want
their sight back if they could have it. However, as I said,
those of us
who
are totally blind and especially those of us who have been blind
since
birth
wouldn't know what to do with sight, and therefore wouldn't want
it. For
my
part, I don't think I would take the pill for the reasons I have
described.
However, I do think blindness research is a good thing, and a
cure for
blindness certainly wouldn't be a bad thing, as long as the
research is
done
with a positive attitude toward blindness. I think this is where
groups
such
as the Foundation Fighting Blindness fall short. They keep using
the
image
of the helpless blind person as a tool for fundraising and
support. In
other
words, I sometimes think they are implying (even if they don't
say it)
this:
"Wouldn't you be devastated if you lost your sight? It would be
so
horrible
for you, and you would be left helpless. So, if you want to
prevent this,
donate to our foundation so you can help us find a cure for the
terrible
thing that is blindness." They don't say that there are ways in
which
blind
people can live normal, independent and active lives. Rather,
they try to
get sighted people to pity us. I think this does more harm than
good. But
that's another subject for another thread.
These are just my thoughts, and I hope I am making sense. What
do you all
think?
Chris
-----Original Message-----
From: nabs-l-bounces at nfbnet.org
[mailto:nabs-l-bounces at nfbnet.org] On
Behalf
Of Arielle Silverman
Sent: Sunday, September 30, 2012 6:01 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] curing blindness
Hi all,
I have studied this topic a bit because it was the subject of my
honors
thesis when I was an undergraduate student. I did a survey about
six
years
ago (a few of you may have participated) to assess how blind
people felt
about the prospect of having their sight restored.
One of the most interesting findings was that when asked whether
or not
one
would take a magic pill that would restore full vision
immediately with
no
risks or side effects, only 72% of the sample said they would do
it.
While
most of the participants said they would do it, a substantial
minority
(about 20%) said no. Some of the people who said no cited
concerns about
losing their identity as blind people, or having to adjust to a
new
sense
and that possibly taking away from their quality of life.
Another finding from the survey was that most people said in
order for a
sight-restoring technology to be worthwhile, it would have to
give them
most
or all functional vision. I personally don't have any objection
to the
technology like the Argus II being developed. I do think it
could be a
problem, though, if technologies that only give very rudimentary
vision
become popularized. They could perhaps lead people like the man
in the
article to forego using a proven travel aid like a cane in favor
of using
very rudimentary vision. As a result, people who have these
procedures
could
actually end up struggling more than they were before. Based on
the
article,
I am not convinced that Lloyd has actually gained any
independence from
the
artificial vision, beyond what he would have gotten with a cane.
Instead,
it
makes him better at passing as a sighted guy, but possibly worse
at
navigating his environment because he is no longer using a cane.
I think
the
challenges and self-esteem issues associated with "passing"
without
actually
having good skills are evident to many of us.
I don't think I would undergo a procedure to improve my vision,
for
several
reasons. I wouldn't even consider it until the technology was
extensively
tested and perfected, and then, only if it could actually give
me full
functionality (driving etc.) Even then, I'm not sure I would do
it because
I
am terrified of surgery and only want to go through that if it
is
absolutely
medically necessary, and I do not want to put the rest of my
life on hold
to
learn how to see. I have more ambivalent feelings about how much
I want
to
support research on curing blindness, and I'm curious to know
others'
thoughts about this.
I have a genetic eye condition and have been told I should send
my blood
to
a lab to have my gene identified because this will aid research
on
genetic
treatments. I've debated whether or not to do it and at this
point I am
mostly indifferent. On one hand, I do think that treatments
could
legitimately help some people who don't have access to
technology or who
live in communities where blindness is viewed very poorly. On
the other
hand, I am bothered by the negative press about blindness that
is often
propagated by cure-oriented groups like Prevent Blindness
America or
Foundation Fighting Blindness, making me not want to support
these
causes.
Furthermore, I believe that no matter how good treatments get,
some
people
will continue to be blind. So I would rather direct my limited
energy
toward
finding ways to make life better for those who are blind rather
than
wiping
out blindness. What do you think?
Arielle
On 9/30/12, Ashley Bramlett<bookwormahb at earthlink.net> wrote:
Hi all,
I know NFB doesn't focus on treatment of blindness or low
vision; they
focus on living with it and adapting to the world with training
and
equipment.
But many organizations do focus on this such as Foundation
Fighting
Blindness and the organization mentioned in this article.
The link is below to the article. I think this guy in the
article was
sure taking a gamble with his life to walk to work without a
cane and
only relying on unclear vision. At least the quote from him
indicates
its hard to focus and learn to see with this artificial vision;
not as
if he claims its perfect. Still he is happy with the artificial
vision
he does have through the camera.
I've had very limited vision all my life and I was fortunate to
be
taught braille after they taught me large print, but realized
its
shortcomings; so I learned braille and I had a cane in mid
elementary
school. Training in O&M was a lot to be desired, but I did learn
how
to use it as well as other alternative techniques from my
teacher of the
vision impaired.
Therefore, I'm adapting and still learning with what I have.
Techniques will also change with technology; for instance, when
I was
young, we had no digital recorders, digital NLS players, no
book
share or any way to download books in braille, no bar code
readers,
and scanners were around although not to the efficient degree we
have
today. So, with all that said, I'm not sure I'd want more
vision. But
this article paints a picture of getting some vision back as a
good
thing. I certainly would not want to enter the sighted world as
I would
not know how to function.
If you read the article, what do you think? Would you take
artificial
vision? This is becoming a reality and they are going to improve
the
technology. The chip sends signals to the camera which sends
signals
to the eyes so the person can see some images.
Here it is.
http://www.cbsnews.com/8301-18563_162-57522740/new-technology-may
-brin
g-sight-back-to-blind/
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