[nabs-l] curing blindness

Mon Oct 1 02:00:31 UTC 2012

Laurel,
Makes sense. I'm not sure what I'd do. I think getting full sight would be 
too overwelming, but I might take something to improve my vision.
If I did opt for  a treatment to obtain some more usable vision, like you, 
I'd certainly still use alternative techniques. I am never going to try and 
pass; I'd put my safety first. I think that guy in the story was nuts to 
walk around outside without a cane given the limited nature of what he saw. 
He was lucky he did not get hurt. And then,  he probably used blindness 
skills at work such as a screen reader because that artificial vision could 
not help him read  documents. What mixed messages that would send.

What I think would be very helpful about having better vision is being able 
to read print comfortabily. I have tunnel vision now and can read some signs 
but not the other info as I walk around; well, sometimes I can read a 
directory as I walk into a building depending on the lighting and size. 
Anyway, things like bus schedules, brochures, magazines, menus outside 
restaurants, and ads in the community as I walk around are not available to 
me. This assists in learning about the world from seeing an ad about a 
product, to the new restaurant menu outside the door, to the brochure or 
tourbook about the  city. I'd really like to avail myself of such info; sure 
I can take a booklet or menu or whatever and scan it at home, but its not 
the same as instant access. So, I think this would be a huge advantage to 
regaining more vision. Unlike those of you who wrote in, I have some vision, 
so I'm used to seeing some things and can even read print. If I still needed 
a cane, I'd sure use it. But I'd also have the other visual info available 
to me such as signs and landmarks which would aid me in both learning about 
the surroundings and getting around.

Ashley

-----Original Message----- 
From: Laurel
Sent: Sunday, September 30, 2012 8:59 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-brin
>>> g-sight-back-to-blind/ _______________________________________________
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