[nabs-l] curing blindness

Mon Oct 1 00:23:45 UTC 2012

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
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