[nabs-l] curing blindness
Chris Nusbaum
dotkid.nusbaum at gmail.com
Mon Oct 1 01:27:53 UTC 2012
Hi Laurel,
You make some good points, and I agree with most of them. I just don't think
I could wrap my head around being sighted after being blind my whole life. I
might do it if the technology made it so I would gradually regain my vision,
but as I said in my last message, I think it would be sensory overload for
me to go from total blindness to full sight. That's just me, and as you
said, to each his (or her) own. :)
Chris
-----Original Message-----
From: nabs-l-bounces at nfbnet.org [mailto:nabs-l-bounces at nfbnet.org] On Behalf
Of Laurel
Sent: Sunday, September 30, 2012 9:00 PM
To: National Association of Blind Students mailing list
Subject: Re: [nabs-l] curing blindness
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-br
>>> in 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%40
>> gmail.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
>
> _______________________________________________
> 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/laurel.stockard%40
> gmail.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
More information about the NABS-L
mailing list