[nabs-l] curing blindness
Sophie Trist
sweetpeareader at gmail.com
Mon Oct 1 00:58:49 UTC 2012
I agree with Arielle and others on this thread. I have been blind
since birth and feel this would be a radical change. I also feel
that this could be mentally unbalancing for many blind people.
Having such an extreme change could cause more harm than help. I
don't want to spend my whole life training to live blind, then
get sighted and have to relearn everything. That would be a pain
in the neck. Also, taking a magic pill that could restore all my
vision goes against my personal beliefs. God made me blind, so
I'll stay that way, thanks very much.
----- Original Message -----
From: "Chris Nusbaum" <dotkid.nusbaum at gmail.com
To: "'National Association of Blind Students mailing list'"
<nabs-l at nfbnet.org
Date sent: Sun, 30 Sep 2012 20:23:45 -0400
Subject: Re: [nabs-l] curing blindness
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/
_______________________________________________
nabs-l mailing list
nabs-l at nfbnet.org
http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
To unsubscribe, change your list options or get your account
info for
nabs-l:
http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/arielle71%40g
mail.
com
_______________________________________________
nabs-l mailing list
nabs-l at nfbnet.org
http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
To unsubscribe, change your list options or get your account info
for
nabs-l:
http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/dotkid.nusbau
m%40gmail.c
om
_______________________________________________
nabs-l mailing list
nabs-l at nfbnet.org
http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
To unsubscribe, change your list options or get your account info
for nabs-l:
http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/sweetpeareade
r%40gmail.com
More information about the NABS-L
mailing list