[Ct-nfb] \blind Babies and the NFB
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Thu Jul 18 02:39:50 UTC 2013
Hello,
The senator won't be confused between the issues does want to help as many
as possible. Now if someone wants to write up a short narative of the
Goodwill minium wage matter I'll submit to his staff that have been helping me
with an issue.
There have been many great points made, but teh major one is that there
does need to be more information gotten out to teh public on the differences
and levels of blindness adn visual impairedness.
In a message dated 7/17/2013 9:11:14 P.M. Eastern Daylight Time,
elevegnale at sbcglobal.net writes:
Hi, Nathanael,
Very elloquently put!
I think that we should enlist Mr. Blumenthal's help on our issues at hand
such as the minimum wage problem with Good Will. Very true, this is a
little baby who needs help, but as Justin said, we don't want to send mixed
messages to Mr. Blumenthal.
Esther
Sent from Esther's Amazing iPhone!
On Jul 16, 2013, at 9:46 PM, "Nathanael T. Wales" <_ntwales at omsoft.com_
(mailto:ntwales at omsoft.com) > wrote:
All,
This is indeed a complex subject. I am glad we are discussing it. And I
appreciate the diplomacy and graciousness everyone has shown.
I am glad that we all seem to agree that the surgery to save this baby’s
sight is not a moral question. And I am glad that we agree to keep the
commitment we have made as an organization through our elected president.
There seem to be two distinct issues at hand, and I think we are blurring
(if you will) that distinction:
1. what the NFB’s philosophy would have to tell us on whether this baby
should have surgery
2. what and how much assistance in getting that surgery our work as an
organization, or as Justin quoted from our NFB pledge the “programs of the
Federation”, should be
As a philosophical matter Justin has appropriately quoted, “The real
problem of blindness is not the lack of eyesight; it is the lack of information
and misperceptions which exist. With the proper training and opportunity,
blind people can lead normal, productive lives.” Information from two
Federation leaders is clear that in India a) lack of information, b)
misperceptions about blindness, c) grossly inadequate training, and d) such little
opportunity that it is comparable to the United States in 1940 are almost
certainly the case. Our own Federation leader Joyce Cain has written in
better detail, and Joanne Wilson, founder of our NFB’s Louisiana Center for the
Blind and former Commissioner of the federal Rehabilitation Services
Administration (whose first husband and father of her five children was Indian),
would confirm this. In order to live a “normal, productive life”, the
expense to change even one of these four prerequisites would require more
money, public good will, and political capital than this child needs to
receive surgery in the United States.
Let me address the more fundamental philosophical matter, which in
comparison is a first world problem but one that impacts all of us to one degree
or another. Assuming that the cost, in time, effort, and expense (the
individual’s, his or her family’s, or society on his or her behalf), of medical
intervention to prevent or cure blindness was the same as a) providing
information, b) addressing misperceptions about blindness, c) getting proper
education and/or training, and d) fighting for and creating opportunities,
which would we choose? Our NFB philosophy tells us that with these four
prerequisites we can have “normal, productive lives” with blindness reduced
to the level of a nuissance or inconvenience. All things being equal, we
should choose the option with less nuissance or inconvenience. There is
neither a moral problem (as we all agree) with preventing or even curing
blindness nor is there an inherent philosophical problem. Consider Mark Riccobono
’s speech to the General Session at our recent National Convention: he
spoke of his daughter who inherited one of the genetic conditions that causes
his or his wife’s (I forget whose) blindness; the doctors are following it,
treating it, but should they fail he and his wife will turn to what I am
sure would be the best in the world information, proper perceptions,
education, and creation of opportunities. Efforts to prevent, treat, and cure
blindness are often done with horrible assumptions about blindness that are
diametrically opposed to our philosophy, but those assumptions are not
inherent and the Riccobonos’ example is one of several where it is done fully
consistent with our philosophy as the assumption.
The issue for us to consider really is what and how much
assistance in getting that surgery our work as an organization, or as Justin
quoted from our NFB pledge the “programs of the Federation”, should be. The
NFB does this rarely as an organization, and there are other charities who
do, such as the Lions as Trevor suggested. In calculating the medical
intervention—its cost, likelihood of success, risks, etc.—we as an organization
have little to no experience. Some members who have participated in this
discussion have seen doctors at Yale and Massachusetts Eye and Ear Infirmary
(one of whom is widely regarded as as close to a god in ophthalmology as
possible) and have not seen these doctors in New York at all. Do we know
that these are the best doctors for this baby? Have we sought second
opinions? I don’t raise these questions to criticize the decision made. How
could I? How could any of us? I raise them to point out that as a program of
the Federation we couldn’t in the future begin to provide or even recommend
medical intervention well and really should leave that for others who
could.
This is before even moving on to any negative public perception we may
have created. I have watched the link to the News 12 story and formed my
opinion of it; I encourage everyone to do the same. But even if I thought News
12 got it exactly correct, the likelihood that we would get our message
out with dignity and the assumption that blindness is not a tragedy while
collecting money for medical interventions is pretty low. On this listserve
we have not even come to a philosophical conclusion ourselves on the matter,
so in future it will be difficult for us to go to the public with such a
program.
What we do best consistent with our philosophy is create a normal image of
blindness, advocate for excellent education for blind children, provide
best-in-the-world training for blind adults, and create ever-increasing
opportunities for blind people to succeed in every facet of life we can think
of. I recommend that we keep the commitment we have made, give thought to
this philosophical matter at hand, and move forward with what we agree on and
know we do best.
For example, since we’ve made a connection with Senator Blumenthal, let’s
use it. He doesn’t have to go to India to find people paid at pennies an
hour; he just has to look at disabled people in this country, and he can do
something about that, too.
Best,
Nathanael T. Wales
From: _Trevor Attenberg_ (mailto:tattenberg at gmail.com)
Sent: Tuesday, July 16, 2013 12:19 PM
To: _'NFB of Connecticut Mailing List'_ (mailto:ct-nfb at nfbnet.org)
Subject: Re: [Ct-nfb] \blind Babies and the NFB
Hey’ll,
While I can’t speak for Justin, just like neither Justin nor I can speak
for you or anyone else when push comes to shove, what Justin said is derived
from NFB official documents and pledges. The reason this conversation has
become rather long and complex, is because it is a more complex issue than
what meets the eye. Justin and I have been involved in a lot of NFB related
functions and institutions, like the Louisiana Center for the Blind. This
does not make our opinions any more relevant than yours; but we have gotten
a good sense of NFB policy and philosophy. The NFB philosophy is central
to the organization’s actions. The NFB does indeed seek to help those in
need; but in this case, Justin and I believe the action here is not the most
effective means of offering help, both for the family, and for the blind as
a whole. This thinking is very much derived from our exposure to NFB
philosophy. As many a blind person knows, sometimes what seems helpful can
actually do much damage. With this said, none of us wish to intrude on efforts to
help this child with vision problems. It is simply requested we do not
make this an NFB issue for reasons stated.
The NFB has a long history of turning down requests for assistance from
blind people. Federationist and blind lawyer Scott Labarre brought this up
after the mock trial at the National Convention. Sometimes blind people do
something foolish, or they hurt themselves as a result of lack of mobility
skills. Then they come to the NFB lawyers for defense or to file a law suit.
This obviously isn’t quite what we’re talking about with this child and
family; but it goes to show how the Federation conducts its business based on
our knowledge of the equal potential of blind people.
Best to ya,
Trevor A
From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Sandee Kush
Sent: Tuesday, July 16, 2013 9:14 AM
To: NFB of Connecticut Mailing List
Subject: [Ct-nfb] \blind Babies and the NFB
I am concerned and confused by the long statement that Justin wrote.
I do not know who the "we" represents, just that it does not represent my
thinking and others.
Reference is made to Dr Mauer and other leadership political positions,
were these people contacted or these "manifestos" interviewed or investigated
prior to including them in such a grandiose point of view statement?
I have learned to keep things simple. Perhaps if the following questions
were answered in a sentence or two, I might have some clue.
The NFB should not get involved in a humane effort to improve the quality
of a baby's life, due to the resources the U.S. has available because…..
How are the efforts to communicate the message of the NFB regarding the
mission of individual independence and society's consciousness raising been
reduced significantly because of a humane desire to publicize the plight
of a baby by involving a dedicated political representative?
How does brining this situation into an internal NFB controversy benefit
anyone in any way?
I applaud and am proud to be associated with Beth Rival's and immediate
team's efforts!
Thank you.
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