[nabs-l] curing blindness

Mon Oct 1 00:59:59 UTC 2012

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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