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

[Frye, Dan]

Mike:

What a thoughtful, well reasoned, response to list member inquiries
about the goals and purposes of the DAN that you have taken the time to
write. Our membership is fortunate indeed to enjoy your leadership. I'm
sure that those who genuinely asked for feedback will receive your
comments in the constructive spirit in which they were offered. Your
statement effectively balanced thoughtful organizational philosophy with
hands-on practical suggestions for member initiatives. The DAN's diverse
membership should appreciate your reply. Thank you.

With Kind Regards,

***********************
Daniel B. Frye, J.D.
Associate Editor
The Braille Monitor
National Federation of the Blind
Office of the President
1800 Johnson Street
Baltimore, Maryland 21230
Telephone: (410) 659-9314 Ext. 2208
Mobile: (410) 241-7006
Fax: (410) 685-5653
Email: DFrye at nfb.org
Web Address: www.nfb.org
"Voice of the Nation's Blind"
The Braille literacy crisis in America jeopardizes opportunities for
blind people throughout the country.
You can be part of the solution. 
 

-----Original Message-----
From: diabetes-talk-bounces at nfbnet.org
[mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Mike Freeman
Sent: Wednesday, July 22, 2009 10:36 PM
To: Everett Gavel; Diabetes Talk for the Blind
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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