[nabs-l] curing blindness
Chris Nusbaum
dotkid.nusbaum at gmail.com
Mon Oct 1 01:30:55 UTC 2012
Yep! But NFB's message must also be working, because we're getting a lot of
donations! <Smile!>
Chris
-----Original Message-----
From: nabs-l-bounces at nfbnet.org [mailto:nabs-l-bounces at nfbnet.org] On Behalf
Of Gerardo Corripio
Sent: Sunday, September 30, 2012 8:44 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] curing blindness
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-bri
>> n g-sight-back-to-blind/
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