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

[Mike Freeman]

Bravo, Al!

Thank you.

Mike

----- Original Message ----- 
From: "Albert Sanchez" <albertsanchez at suddenlink.net>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Thursday, July 23, 2009 6:59 AM
Subject: Re: [Diabetes-talk] Goals for the Division? And, How Can We 
Help?


Mike!

What a fine post! I'm behind ya 100 percent of the way, gonna do my part 
in
a couple of weeks when I meet with my new diabetic specialist.
Yours in Federationism
Albert Sanchez
Al's Piano Tuning & Repair
215 John Avenue
Greenville, NC 27858-4113
252-757-3023
----- 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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