[Ct-nfb] \blind Babies and the NFB
Justin Salisbury
PRESIDENT at alumni.ecu.edu
Wed Jul 17 02:31:57 UTC 2013
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> 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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