[Ct-nfb] \blind Babies and the NFB

[Edward]

Hello 

I am not arguing that Justin's interpretation of nfb philosophy is
incorrect.  I am simply stating that asking for help on this list does not
tarnish the nfb's philosophy in any way.  I think as long as we are not
inundated with emails asking for help, the occasional email is fine.  Those
that do not, or cannot help can delete the emails, while those that are able
to help can do so.  The question here I think is, should we the nfb of
Connecticut allow emails regarding blindness, but not totally in line with
nfb philosophy be distributed on this list.  My feeling is yes, as long as
it doesn't get out of hand.  Justin has valid points, and knows nfb policy
extremely well, but I do believe we need to find a balance between nfb
philosophy,and humanity.  They generally are in sink, and where there may be
a fine line, I think debates like this are important.

Thanks
Edward
 

-----Original Message-----
From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Nathanael T.
Wales
Sent: Tuesday, July 16, 2013 9:47 PM
To: 'NFB of Connecticut Mailing List'
Subject: Re: [Ct-nfb] \blind Babies and the NFB

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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