[Ct-nfb] \blind Babies and the NFB

Wed Jul 17 14:09:15 UTC 2013

Elizabeth:

Educating the public is very important and is a deep part of our cause. In this case, we have unfortunately mis-educated the public.  We have endorsed the wrong message.

Sent from my iPhone

On Jul 17, 2013, at 7:05 AM, "Cookiechumper at aol.com<mailto:Cookiechumper at aol.com>" <Cookiechumper at aol.com<mailto:Cookiechumper at aol.com>> wrote:

Helllo Edward,

Your email was great and  to teh point.  What's teh  whole thing here about our  philosophy   it should just be that fellow people  who are reaching out to others in similar situations. I don't know what it is of nfb, but what I can tell you is that there needs to be education and information given to teh public   and the way it'll happen is if we do teh speaking,changing,and leading by example adn that is what's happening here we've reached out to someone in need, showing the public  how we do it and  they'll follow behind so shouldn't that be a good enough philosophy.
Thankyou,
Elizabeth

In a message dated 7/17/2013 12:14:53 A.M. Eastern Daylight Time, personal.edward at gmail.com<mailto:personal.edward at gmail.com> writes:
Hello,

My emails were not to entertain, rather to help in giving a different
viewpoint on the subject of if helping this child should or shouldn't be
discussed on this list.  I believe I am being grossly misquoted.  I will not
make anyone go back and reread my previous email, I will paste the quote
here.  My quote is "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."  I never stated that the nfb's
policies are inhumane.  Quite the opposite, I stated that they are generally
in sink.  When I am speaking of humanity, I am doing so in the most purest
sense.  I am defining humanity, or humanitarian acts as strictly giving, or
helping ones fellow man.  I of course understand that this is not what nfb
philosophy is, but that doesn't mean I am stating that the nfb is an
inhumane organization, just the opposite.  The point I tried to make, and
maybe didn't do a good job of making, is even though asking for help for
this child is not a direct nfb sanctioned event, we should still allow it on
the list, as long as we are not inundated with such requests.  Why, because
it's simply the right thing to do.  It's an example of the fine line I am
speaking of, and it's what makes the nfb such an amazing organization.
Finally, I will leave you with this.  After meeting so many good
federationests at the 2013 convention a couple of weeks ago, I believe that
the nfb is made up of one part policy, one part philosophy, and two parts
humanity.  It is what defines us.  We are not just a collection of rules and
regulations.  We are a group of strong decent people that  can show extreme
generosity on one hand  when needed, while still being able to rely on the
guiding principals of the nfb, without compromising our humanity, nor our
philosophy.

Thank you,
Edward

-----Original Message-----
From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Justin
Salisbury
Sent: Tuesday, July 16, 2013 10:32 PM
To: NFB of Connecticut Mailing List
Subject: Re: [Ct-nfb] \blind Babies and the NFB

I am not philosophically opposed to helping this baby acquire surgery.

This cause is simply not appropriate for the National Federation of the
blind of Connecticut's work.

Recall the example I gave earlier involving public schools and religion.

Our role in this cause is much greater than circulating an email about it.

I don't believe there is anything inhumane about our organizational
philosophy, and I find it honestly a bit entertaining that anyone would
propose such an idea.

Justin

Sent from my iPhone

On Jul 16, 2013, at 10:16 PM, "Edward" <personal.edward at gmail.com<mailto:personal.edward at gmail.com>> wrote:

> 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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