[nabs-l] curing blindness

[Arielle Silverman]

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-bring-sight-back-to-blind/
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