[Ct-nfb] \blind Babies and the NFB

Thu Jul 18 03:52:17 UTC 2013

Hey Again,

In terms of philosophy, basic policy, and training, the NFB does not distinguish between different levels of vision or type of eye condition. There are diabetic groups I know, but such groups still exist within the structure of the NFB’s guiding principles, which treat all people requiring adaptation in response to vision loss beyond simple glasses as blind. The Federation does this in order that we maintain cohesive action, and that all blind persons are given the same respect and degree of opportunity.

In response to Beth, from my understanding, the message forwarded from last year was from Mark Ricobono’s secretary. The message sounded like Mr. Ricobono’s  office got a call or letter containing a Connecticut area code phone number; and thus the secretary decided by default this would be better dealt with by the CT affiliate. It does not appear the message represents a judgment based on NFB philosophy, but on simple practical business procedure. I suppose the same would have been done if the call or email came from a local sheltered workshop business, or a real-estate salesman hoping to market happy shelters for the blind. I would not expect Mark Ricobono’s secretary to represent NFB philosophy, nor would I expect her to make too many policy decisions on the NFB’s behalf. In fact, she explicitly explained it was up to you and/or the NFB of CT to determine the appropriateness and gravity of the cause at hand. This is distinct from an approval from National I would say.       

Best,

Trevor A.

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Cookiechumper at aol.com
Sent: Wednesday, July 17, 2013 10:40 PM
To: ct-nfb at nfbnet.org
Subject: Re: [Ct-nfb] \blind Babies and the NFB

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> 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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