[nabs-l] curing blindness

Mon Oct 1 01:06:33 UTC 2012

  Part of me I wouldn't want to go through what the guy in "At First 
Sight" had to go through to learn everything as a sighted person, where 
in the end he became blind again! Whereas another part of me would see 
this as an adventure. Great topic!

El 30/09/2012 07:58 p.m., Sophie Trist escribió:
> 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
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