[nabs-l] curing blindness

Mon Oct 1 02:00:30 UTC 2012

Hi all,
This is an interesting topic, and I have to say that I'm torn on this
issue. While I would truly want to experience being able to drive, and
the independence that comes with it, that's about the only major
benefit that restoring vision would have for me. And yet, that's no
small thing. There are some days when I really hate not being able to
drive, since I live in a rural area and really can't do much of
anything independently due to the fact there's no public
transportation, or even Paratransit service. I can imagine how utterly
exhilerating it would be to get behind the wheel of my car and race
away to parts unknown, or even just to stroll confidently into a
store, pick out what I want without any help, get back in my car and
go home. I've always been a bit of a loner, and it took me a very long
time to overcome a near social phobia in which I literally couldn't
approach strangers in those kinds of situations without having panic
attacks. I still don't like doing it, but I've realized that being an
adult carries responsibilities, and one of those is to swallow your
emotions and do things that make you uncomfortable, because that's how
you succeed.
A lot of times, people tell me I'm not missing anything, that worries
about gas prices, car repairs, and insurance are enough to drive some
people over the edge. But I always say that they're looking at what
they believe to be the greener grass on the other side of the fence,
as am I, and neither of us is right or wrong, we're just experiencing
things differently.
Having said that, while just that thought alone is enough to almost
make me go through with such a procedure if it were to exist, there's
an equal part of my mind that has serious reservations. For one thing,
we have no idea what is involved with processing sight. Who's to say
that opening our eyes after surgery for the first time wouldn't cause
such an overwhelming sensory reaction that our brains would simply
shut down? I have a close friend who lost his sight to cancer when he
was 3. When he and I were discussing this topic recently, he told me
that it wouldn't have to happen that way. All you would have to do is
focus solely on things like picture books and other things that young
children use to learn to read and to distinguish images. However,
although it really was a good idea, the truth of the matter is that
you wouldn't be looking at these books 24-7. As I described it to my
friend, the first thing you're going to do when you open your eyes
isn't to pick up a book. You're going to take in your
surroundings--the color of the wallpaper, the lamp beside you on the
nightstand, the pattern and color of your bed covers, even the scenery
outside the window--this couldn't be helped, and that alone, in my
opinion, could be enough to cause an extreme reaction. I think someone
mentioned the movie At First Sight. I'm sure we've all seen it, and
that paints a pretty grim picture of sight restoration. I think the
reality would be much harder.
Then there's the procedures themselves. I would seriously hope that
sight restoration would not come in the form of a "magic pill." That
sounds awfully sketchy to me. What would be the long-term effects of a
drug that could rewire your brain, or even cause your retinas or optic
nerves or whatever is malfunctioning to suddenly spring into action
after lying dormant for months, years, or even a lifetime? What would
happen if you forgot to take it every day? There are side effects,
effectiveness rates, and all sorts of other things to worry about.
Surgery seems a bit more promising, but I know there are people who
are wary of that as well. I guess, however, that it would have to be
one thing or the other, and I'll have to cross that bridge when I come
to it.
Finally, someone was mentioning the Foundation Fighting Blindness and
other such organizations. Don't be too hard on them. Maybe portraying
helpless blind people isn't morally sound, but it does bring in money,
sadly. It's like those commercials that you see where they beg you to
send money to starving children or abused animals. They play up how
destitute and deplorable the situations are for those people and
animals for a reason: to play with people's emotions, to break their
hearts, because a strong emotional reaction will goad donators into
action. It's just a part of human nature, so you can't really blame
any organization for picking up on that and using it to their
advantage.

On 9/30/12, Rania Ismail LMT <raniaismail04 at gmail.com> wrote:
> I agree with Ariel as well.
> I have been blind since birth and think I would be confused with the way
> things work as a sighted person.
> I think the adjustment would take a while.
> Rania,
>
> -----Original Message-----
> From: nabs-l-bounces at nfbnet.org [mailto:nabs-l-bounces at nfbnet.org] On
> Behalf
> Of Sophie Trist
> Sent: Sunday, September 30, 2012 9:59 PM
> To: National Association of Blind Students mailing list
> Subject: Re: [nabs-l] curing blindness
>
> 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/
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