[Diabetes-talk] Goals for the Division? And, How Can We Help?

Thu Jul 23 09:31:46 UTC 2009

wow ask my grandfather used to say this is long haired stuff. 
Incidentenally Mike the pamphlet at least a few other divisions have a 
similar one, including NAGDU.

Not being condiscending at all about your letter.  way to long. We are 
trying to start a chapter here, Dr. Mindy Joy Jacobsen and myself, to which 
I suggest that we start one, we will be having a luncheon at our state 
convention.

Cheryl Echevarria

skype: angeldn3

----- Original Message ----- 
From: "Mike Freeman" <k7uij at panix.com>
To: "Everett Gavel" <e.gavel at sbcglobal.net>; "Diabetes Talk for the Blind" 
<diabetes-talk at nfbnet.org>
Sent: Wednesday, July 22, 2009 10:36 PM
Subject: Re: [Diabetes-talk] Goals for the Division? And, How Can We Help?

> Everett, Cheryl and fellow list participants:
>
> It's great to see such enthusiasm and willingness to do the work of the
> Diabetes Action Network (DAN). If every Federationist had this spirit,
> agencies for the blind with antediluvian attitudes wouldn't know what
> hit them!
>
> You have been asking what are the mission and goals of DAN with a view
> to deciding how you can participate. Here is my rather lengthy opus to
> answer this question. I emphasize that I haven't cleared what follows
> with the DAN Board of Directors and  that, hence, it is not official DAN
> policy. Nevertheless, I think it is a good distillation of NFB and DAN
> philosophy and should provide guidance in our thinking.
>
> Since DAN is a division of NFB, it should be obvious that above all
> else, DAN must actively carry out the policies and programs of NFB and
> must embody NFB's positive philosophy of blindness. This has not been a
> problem since from its inception, DAN has spread the gospel that blind
> diabetics can successfully and independently manage their diabetes and
> maintain a high quality of life. I believe, however, that being a
> division of NFB has broader implications that often remain unstated and
> that should be clearly understood. For example, consider the matter of
> blindness prevention. No one argues that we should not do all that is
> prudent and reasonable to preserve any remaining vision we may have,
> particularly when the condition causing our blindness has other health
> implications. It is clearly not the mission or purpose of NFB, however,
> to engage in blindness prevention and sight-saving efforts. NFB's
> mission is, among other things, to represent those already blind and to
> see to it that the blind and those losing vision have the blindness
> skills and positive philosophy of blindness needed to succeed.
> Analogously, I believe that it is not within the purview of DAN to
> engage in efforts to prevent diabetes. Therefore, for example, I believe
> that it is not within the scope of DAN's mission to engage in screening
> for prediabetes and diabetes at NFB gatherings as some have advocated.
> This notion of the limited scope of DAN activities concerning diabetes
> may seem radical  to some. But when has NFB ever shied away from being
> radical?
>
> It is fair to ask whom DAN serves. I believe DAN primarily serves two
> groups: (1) diabetics facing blindness or vision loss due to diabetic
> retinopathy and (2) those already blind who become diabetic. Although it
> is dangerous to generalize, it is a reasonable assumption that the first
> group faces adjustment to blindness including learning the skills of
> blindness, a positive philosophy of blindness and use of adaptive
> technology such as insulin-measuring devices and talking blood glucose
> monitors; presumably this group already knows something about managing
> diabetes although there isn't a diabetic alive who couldn't learn more
> about this topic. The second group is presumably familiar with the
> skills of blindness (although all of us never stop learning new tricks)
> and, therefore, primarily needs to learn how to cope with diabetes
> including how to use the equipment (adaptive and otherwise) needed to
> maintain good diabetes control.
>
> In order to serve these two groups, DAN must also educate health
> professionals, rehabilitation counselors and technicians and the
> families of blind diabetics in NFB's positive philosophy of blindness
> and in the methods and devices specifically used by the blind to manage
> diabetes.
>
> DAN's new book, "Bridging the Gap", summarizes DAN's mission well. Here
> is what it says: "Since 1985 the NFB Diabetes Action Network has
> educated, empowered, and inspired blind diabetics to live their best and
> fullest lives. The DAN encourages its membership, advocates for
> accessible diabetes technology, and does everything it can to put
> essential information about diabetes into the hands of blind people.
> This Federation division fosters positive attitudes and offers practical
> advice to blind diabetics, family members, rehabilitation specialists,
> and healthcare professionals working in the field of diabetes."
>
> Given the foregoing, I believe their are many ways for individual DAN
> members to carry out DAN's mission. I shall enumerate these in the
> paragraphs which follow although their order does not imply their
> priority in terms of DAN time and resources and is nothing like a
> complete list.
>
> (1) Go to local meetings of diabetes support groups and offer assistance
> to those facing the need to cope with vision loss and diabetes. If you
> are well-received, try to educate the whole group (including the group
> leader or facilitator) about blindness and how to deal with diabetes if
> one is blind. You may face resistance since all-too-many people are
> blithely traveling down that great African river Denial when it comes to
> vision loss, diabetes or both. Try to make friends with those whom you
> are trying to help; friendship often trumps reason in persuading
> individuals either to join DAN or NFB or to accept that they may need
> help.
>
> (2) Try to educate your local healthcare professionals (certified
> diabetes educators, physicians, nurses, hospital personnel and the like)
> about blindness, how blind diabetics manage their disease independently
> and can lead useful, fulfilled lives. This is often easier said than
> done since most medical personnel have limited time and are not known
> for their humility! Our new book, (Bridging the Gap", may help with this
> education although it was sufficiently costly to produce that we cannot
> afford to distribute it willy-nilly. But if you know medical personnel
> well enough that you think they'll actually read and make use of the
> book, by all means get copies from the NFB Materials Center and give the
> book to them. Similarly, if you find diabetics facing vision loss whom
> you think will read the book, give them copies.
>
> Incidentally, I am considering the feasibility of writing a one-page
> information pamphlet, similar to the pamphlet WHAT IS THE NATIONAL
> FEDERATION OF THE BLIND, describing DAN that could be distributed hither
> and yon relatively cheaply as "The Voice of the Diabetic" once was.
>
> (3) Consider holding seminars for blind diabetics and/or diabetics
> facing vision loss in your area with general information on diabetes
> (medications, carb-counting, how to deal with medical insurance, where
> and how to obtain diabetes care supplies, etc.) and information on how
> to cope with diabetes if one is blind or losing vision. I envision these
> seminars as being like the "possibilities fairs" some affiliates have
> been holding for senior citizens facing vision loss. These seminars
> could be held in conjunction with state conventions or local chapter
> events or as stand-alone events. If you hold such seminars at affiliate
> conventions, you have a chance to educate your nondiabetic affiliate
> members about diabetes.
>
> (4) Hold seminars for medical personnel, particularly certified diabetes
> educators, in your area concerning blindness skills, NFB's philosophy of
> blindness and methods and devices used by the blind to manage their
> diabetes. Charge $50 or $100 per head to attend the seminars for
> professionals; they'll value what you have to say more if they have to
> pay for it! (I've also thought of approaching the Jernigan Institute to
> officially establish such an education project but it's still in the
> "idea" stage and I'm ruminating on it).
>
> (5) Work with Diane Filipe to sell DAN pins. You'll raise money for the
> DAN treasury (more important than ever now that DAN is no longer
> receiving regular subsidies from the NFB national treasury) and you'll
> be informing everyone about DAN and NFB and you never know when such
> knowledge will bear fruit.
>
> (6) If your state affiliate does not have a DAN chapter, consider
> founding one.
>
> (7) I'm considering setting up a "call-out" list of people who can
> answer questions about all aspects of diabetes care and the blind. Ed
> Bryant and I field many questions ranging from those of newly-blind
> diabetics who cannot conceive of the possibility that they can control
> their diabetes independently to questions from members of families of
> such individuals with similar concerns to long-term Type 2 diabetics who
> are already blind but who aren't sure if they can independently
> administer their own insulin. There are many articles in past issues of
> "The Voice of the Diabetic" respecting these matters but the personal
> touch often makes the difference. Consider volunteering for such a
> "call-out" list, letting me know what aspects of diabetes care and
> blindness you consider your baillywick. I warn you that if I create such
> a list, you might get phone calls at six in the morning, lunchtime,
> dinnertime or eleven at night! When desperate, people tend to forget
> about time zones!
>
> (8) Talk to local pharmacists about carrying the test strips for the
> Prodigy Voice. DDI is working with several pharmacy chains to get Voice
> strips carried; Kelly Massaro can probably let you know the procedures
> and contact information for pharmacies to initiate the process to carry
> such strips.
>
> (9) Put a copy or two of "Bridging the Gap" in your local library.
>
> As I say, this is by no means an exhaustive list. NFB members are
> extraordinarily innovative in coming up with interesting and useful
> projects; have at it!
>
> You will note the absence of one project in the list above that is near
> and dear to all of us: working toward elimination of those abominable
> warnings against use of insulin pens by the blind without sighted
> supervision from pen packaging and inserts and prescribing information.
> There is a good reason for this: unless you know the CEO's of Eli Lilly
> and Novo Nordisk or personnel in these companies with enough clout to
> change their entrenched bureaucracies, there's not a lot you can do as
> individuals. on-line petitions, testimonials and the like won't bear
> much fruit at this stage. I am in contact with officials at Novo Nordisk
> and am attempting to deal with Eli Lilly. Individual testimonials as to
> the ease of pen use by the blind may eventually help change policy at
> these companies but we must convince these companies that we mean
> business. Ann Williams' study will undoubtedly help. But it may take
> considerable jaw-boning since most, if not all, antidiscrimination
> statutes don't apply to medical devices. It may eventually become
> necessary to deal with the FDA also and we may have better ammunition if
> so. We shall see. In any case, things will be clearer in a month or two.
>
> I'll end this tome by telling you that I will attend the American
> Association of Diabetes Educators (AADE) annual conference August 5-8 in
> Atlanta. DAN will have a booth in which I will exhibit our book, other
> DAN materials and a few pieces of adaptive diabetes equipment. I
> anticipate making useful contacts with CDE's to get our message of hope
> and empowerment out to diabetes professionals.
>
> If you've gotten this far, you deserve a DAN pin. (grin) I hope this
> gives you some notion of where I think we're headed and what we ought to
> be doing. As always, I'm open to suggestions. DAN belongs to all of us.
>
> Onward, comrades!
>
> Mike Freeman, President
> Diabetes Action Network
> National Federation of the Blind
> ----- Original Message ----- 
> From: "Everett Gavel" <e.gavel at sbcglobal.net>
> To: <diabetes-talk at nfbnet.org>
> Sent: Monday, July 20, 2009 3:46 AM
> Subject: Re: [Diabetes-talk] Goals for the Division? And, How Can We
> Help?
>
>
> Good Morning Mike,
>
> I agree, for the most part.  Mission statements and "visions" and all
> that,
> are too often useless.  But I asked about specific goals and steps or
> tasks,
> not just dreams.  (smile)
>
> I am just trying to gain some focus to help myself be more useful.  I
> have
> no real interest in just being a member of something to say I'm a
> member.
> If I am a part of something, I want to be, try to be, a useful,
> productive
> member.  For years I was - at the least - dispersing copies of the Voice
> each quarter.  It was a thing I could do.  It was something, y'know?  So
> I'm
> just looking for something again is all, I guess.
>
> At convention, I momentarily thought of putting my own name up for
> possible
> election during our proceedings at the seminar.  But then, I asked
> myself
> the simple question:  "Why?"  I've been out of the loop and rather
> unproductive for too long, and so thankfully kept my mouth shut when you
> were asking for, "Any other nominations."
>
> Every time I catch myself thinking of something like that, I immediately
> ask
> myself, "Why?"  Why do I want to be in some elected or appointed
> position?
> What difference would it or could it make?  What would I do differently,
> y'know?  What would be different then, that I could not do right now,
> today?
> And so then I find I'm back to trying to find out what the division (or
> any
> other organization) exists for, so I can hopefully contribute in some
> meaningful way, day by day.  Because I do realize one does not need to
> be in
> any official position to be able to change the world. (smile)
>
> I look forward to your response later in the week - or whenever it makes
> it
> to us.  I look forward to reading about how we all, here, may be able to
> be
> more productive and helpful as members, together.  Thanks for your time
> and
> your efforts--all of you who've taken on leadership roles for the
> division.
>
>
> Strive On!
> Everett
> www.DreamingInTandem.blogspot.com
>
>
> ----- Original Message ----- 
> > AS a Federal employee, I am deathly allergic to mission statements,
> > statements of goals and objectives and other such bureaucratic
> > detritis
> > that serve more to inflate egos than they do to actually make
> > systematic
> > plans for the future.
> >
> > Later in the week, I will summarize my remarks at the DAN Seminar and
> > say where I think we should go from here. But the DAN Board will want
> > to
> > weigh in on this also before anything official is done. I have a
> > number
> > of ideas for possible projects and even simple publications but I
> > would
> > rather bring these before the DAN Board before I say more.
> >
> > So expect something later in the week.
> >
> > Mike
> >
> > ----- Original Message ----- 
> > It was great getting to be in Detroit, and be in on the Diabetes
> > Action
> > Network seminar.  It was my first national convention in a handful of
> > years.
> > It's helped to re-inspire me in some great ways.  And so I'm trying to
> > "catch-up" and I'm asking, where do we go from here, Sir?
> >
> > If there was any sort of division or convention wrap-up sent out
> > already, I
> > apologize.  I might've missed it.  And I did miss the beginning of the
> > seminar at the convention.  So to get a little more up-to-speed, I'm
> > asking
> > here, publicly, what are our goals and wishes and dreams for the
> > division,
> > now that we're apparently not going to have the Voice of the Diabetic
> > as
> > our
> > main tool anymore?
> >
> > What should and could the members do, to help this division thrive?
> > Do
> > we
> > have specific dreams, goals, tasks, that we hope to achieve as a
> > division?
> >
>
>
>
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