[nabs-l] curing blindness
Chris Nusbaum
dotkid.nusbaum at gmail.com
Mon Oct 1 01:22:40 UTC 2012
Hi Gerardo,
Are you talking about Mike May? I'm pretty sure he's still blind.
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 9:09 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] curing blindness
Also have you guys heard the story of this blind guy who had surgery and
had to relearn everthing as a sighted person? Even as he learned, he still
used his guide dog. What is Michael something? he's the founder of Sendero
group I think.
El 30/09/2012 07:59 p.m., Laurel escribió:
> Ok. Y'all might kill me for saying this, but you wanted our thoughts
> on the matter, so here goes.
> I am blind from birth, have an artificial left eye and see only
> light/dark and colors and some shapes and movement in my right eye. I
> read braille and all. If I had the chance to use some form of medical
> technology that would improve my vision, even a little but, I'd take
> it. While I am extremely comfortable with my identity as a blind
> woman, and while I realize that I may never get 20/20 vision, I would
> be willing to do anything that would improve my vision slightly. I
> realize I may be in the minority in this group, and that most people
> might not agree with me, but those are my thoughts. I must also say
> that even if my vision improved a little bit, but not very much, I
> would not stop using a guide dog or some form of mobility aid like
> this gentlemen is doing. I would still utilize any mobility aids that
> I would need in order to be safe, and I would still utilize any
> blindness related technology, braille, jaws etc, that I might need.
> I'm not interested in passing off as a sighted person either and I
> realize that with improved vision goes many challenges. I'm not even
> trying to argue with that. I'm for being safe and all. All I am
> saying, is that if I had the chance to do something that would help
> improve my vision, even if it only improved like by 5 percent or so,
> I'd strongly consider doing it. Anything helps.
> Just my opinion, I totally understand those of you who would disagree
> with me. Each man to his own. /smile/ Laurel
>
> On 9/30/12, Gerardo Corripio<gera1027 at gmail.com> wrote:
>> 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-b
>>>> rin g-sight-back-to-blind/
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