[nabs-l] curing blindness

Mon Oct 1 00:44:08 UTC 2012

  Sure! These foundations only care about money money money; not only 
that: they use the psychological of pity to get people to donate.

El 30/09/2012 07:23 p.m., Chris Nusbaum escribió:
> 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%40gmail.
>> 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.nusbaum%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/gera1027%40gmail.com