[Diabetes-talk] Diabetes resolution

Thu Nov 21 19:36:15 UTC 2013

Hello NFB Friends,

This is an interesting exchange of ideas on how to motivate companies to
create accessible products which are useable for the blind and vision
impaired population.   

Please allow me to speak briefly from my experience.  I had the privilege to
work as Vice President of Prodigy Diabetes Care for five years.  I am no
longer with Prodigy so I am not trying to sell anything.  About eight years
ago Roche announced that they were pulling their VoiceMate off the market
without a replacement.  The NFB, AFB, ACB, and other major blind
associations asked all of the big diabetes companies to make a talking
meter.  Unfortunately this request went unanswered.  These blind groups
asked Prodigy and the owners said yes and made the first standalone talking
meter - the Prodigy AutoCode.  Shortly thereafter Prodigy was approached by
key leaders of the NFB and we were asked to make a totally accessible meter.
We ended up working very closely with key NFB Staff for almost a year to
design a fully accessible meter to NFB specifications - the Prodigy Voice
meter.  The Prodigy Voice meter is the only meter to win the Access Plus
Awards from the NFB and AFB.  Prodigy spent much time, effort, and money
creating this game changing meter which was subsequently copied by several
less than ethical companies.

My point is this, it is important to speak out and let companies know of
unmet needs within the industry.  When a caring company, like Prodigy, steps
up and goes the extra mile to listen and take action on your request, let
them know that you appreciate their efforts!  Tell them with words  and
support them by using their products and referring your friends!  Companies
have to make a profit to stay in business and provide quality products and
service long term.  Make your requests known in the marketplace, backing
them up with market size numbers, etc.  When a company like Prodigy comes
through with accessible products support them.  In so doing, you will
develop long term business partners that will jump through hoops to serve
you. 

All the best and Happy Thanksgiving!

Jerry Munden, "Recipient of the 2011 NFB Bolotin Award"

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
COLLEEN ROTH
Sent: Thursday, November 21, 2013 11:29 AM
To: diabetes-talk at nfbnet.org
Subject: Re: [Diabetes-talk] Diabetes resolution

Hello Mike,

I hate to say this but I agree that this is something which will take time.

People probably don't see the need for accessible equipment for blind
diabetics because they do not think we need to be able to be independent in
this area.

As more Diabetics become blind this may change.

Maybe when a State passes a Resolution we can share this Resolution with our
Members of Congress.

This may or may not help but it is worth a try.

Add Ohio to the list of States who passed a Resolution at our State
Convention earlier this month.

Colleen Roth

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Debbie Wunder
Sent: Wednesday, November 20, 2013 10:26 AM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Mike, in just a few short words, I often think that your attitude sets us in
the direction of failure. Sandy is correct in her approach, and we need to
move forward in a plan to change how the medical world sea's our need. There
are so many different groups of people whom could benefit by the needs of
the blind. Such groups and people with dyslexia, brain injury, and
blindness in later life. We have to collectively work on make companies have
to make their medical products accessible to all.

As Michael Hingson says"Talking with Vision" we have to be able to see the
need and believe in the possibility of changing medical equipment.

I believe this resolution is a great starting place, also a letter writing
campaigned to many of these companies demanding accessibility.

Debbie

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Mike Freeman
Sent: Wednesday, November 20, 2013 10:24 AM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Diabetes resolution

I do not believe I am erring on the side of defeatism. And I do not believe
that a reality check dooms an endeavor to failure. I realize that such
thinking is quite prevalent within NFB. I admit that in this respect, I
march to a slightly different drummer than many in that I consider having
one's back to the wall -- which we do on this issue to some extent -- is a
fine motivator for both out-of-the-box thinking and for attacking a problem
with determination.

I shall refrain from further discussion in this vein in that sparring with
each other does nothing to solve the problem. Veronica asked a question; I
answered. There is obviously more than one answer. Long live variety.

On with the work we are on.

Mike

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Sandi Ryan
Sent: Tuesday, November 19, 2013 11:30 PM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

On the contrary, I am not in denial about the difficulty of this situation,
the length of time and hard work that will be involved, or the opposition we
will need to overcome.  I understand the downsides.  But to err so far on
the side of "reality" that we feel defeated before we start will doom us to
failure.  You said in your first message that this project will require
out-of-the-box thinking.  In my opinion, your messages demonstrate just the
opposite.  We can work at this with hope and an eye toward helping each
other, or we can go into it negatively and lose the battle at the beginning.

I know which approach I want to take.

And I don't think Apple created Voiceover and made their products accessible
just because they're good that way.  I think that the small population of
blind people, working together and with partners, created an atmosphere that
demanded what we needed, and even this giant corporation saw the light.  And
they created a model for accessibility that can work for others, which is my
point.

We can debate this all year.  I choose, however, to work on the issue.  You
can work with me and the others who want to do this, or you can call me
names and indicate that I'm too stupid to see the obstacles.  I see them, my
friend.  I just choose to ignore the ones I can, jump over the smaller ones,
and make the grindingly difficult climb to the top of the rest.  Will this
happen in my lifetime?  I don't know.  But if we manage to budge even one
corporation's mindset, or find a way to go around their mindset and create
accessibility in some other way, we will have accomplished something.  And
small accomplishments bring others into the fold.  I've been a Federationist
for years, too--and I know the power of working together.

Sandi

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Cindy Ray
Sent: Tuesday, November 19, 2013 10:53 PM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Oh, please, I know all of this. But a little "Polly Anna", a little
optimism, a little joyful can keep you going much longer than a bunch of
cynical that puts down the polly anna that you say she is. As she said, we
know it isn't happening this year or next. My first Apple was a disaster. It
took years; this will take years. but if you sing while you are carrying the
load it is a lot better than to be cynical. In any case, different strokes I
guess.

Cindy Lou

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Mike Freeman
Sent: Tuesday, November 19, 2013 10:48 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Diabetes resolution

You ask: what's the point? Well, we *know* what will happen if we *don't* do
something -- nothing! But we just might succeed. And I've been in NFB long
enough to see that even though we often take two steps forward and one back,
we still make progress. It's from all of us working together to change, even
if with "all deliberate speed", what it means to be blind.

Mike

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Cindy Ray
Sent: Tuesday, November 19, 2013 10:38 PM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Cynical is good; and, Mike, what you say is true. However, if you don't have
the faith that finally right will win out, then what is the point of
fighting for something. I would say it does get discouraging a lot. For
instance, in the Presbyterian Church we argue for alternative formats; we
are getting our new hymnal on BookShare. Also, like all other hymnals in the
world today, it is just lyrics because who is going to produce the music?
Music transcribers and music readers (braille music) are even more in the
minority than blind people. And of course at some point tough will have to
happen. Much of what we have been able to get was obtained through tough.
But if we can't have the faith that we will get there, then there isn't any
point.

Cindy Lou

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Mike Freeman
Sent: Tuesday, November 19, 2013 10:29 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Diabetes resolution

Sandi:

With great respect, you are, too, a Pollyanna. You have a far rosier notion
of humanity than do I, at least when it comes to homo corporationus. You
believe that people can be convinced to do the right thing just because it's
right and moral. I, on the other hand, believe that most of humanity are
money-grubbing illegitimate sons and daughters and, at least when it comes
to spending money, cannot be depended upon to "do the right thing" but must
have incentives -- legal or financial -- to be inveigled into doing the
right thing. Long live the difference.

Also, if we are to make progress, we must be ruthlessly honest with
ourselves. For instance, few people in the rosy glow of i-device
accessibility remember to acknowledge that before Steve Jobs jumped on the
accessibility bandwagon, we and Massachusetts threatened to file a lawsuit
whose effect would have been to halt the sales of *all* Mac computers to
Massachusetts schools. And since schools are a very lucrative market for
Apple, the company all-of-a-sudden began to pay close attention to us and to
ask what we expected of an accessible device. So it wasn't altruism at all,
not at least, in the beginning. It was good, old-fashioned self-interest and
money-grubbing that brought Apple to the table.

Moreover, it's not as simple as just saying that there's voice technology
out there that can be used for minimal cost. FDA doesn't buy the argument
that the voicing technology is *not* an integral part of any medical advice
it will issue 510(k) approval to market. FDA maintains that each and every
device must be rigorously tested including the voice. It doesn't buy the
argument that one voice technology and its implementation which is shown,
for example, to render numbers accurately from a voltage input, once tested,
can be used on *all* technology. It will mandate testing of *each*
implementation.

For example, FDA won't regulate blood glucose apps as long as they aren't
conveying actual measurements. But as soon as one hooks an i-device to a
blood glucose meter, for example, FDA will insist upon approving *both* the
meter *and* the implementation on the i-device. And for us, FDA will insist
upon testing this with VoiceOver. FDA won't take it for granted that
VoiceOver will correctly render what the i-device gets from the meter.

Translation: recurring, large costs to gain approval to market *each*
device.

I say this not to discourage but rather in the spirit of "know thine enemy".

I am not convinced that *any* accessibility laws now on the books really
cover medical devices. However, Veronica and I are looking into the Orphan
Drug Act as a way of creating a financial incentive for companies to work on
accessible diabetes devices. And I am pondering whether it would be possible
to introduce legislation into Congress which would indemnify developers of
accessible diabetes technology against liability. I'm not sure this is a
good idea. However, I *am* certain that the current political climate is not
conducive to *any* mandates on business.

Furthermore, the blindness market isn't nearly as large as we often delude
ourselves into thinking. If the NFB Independence Market sells twenty
thousand of anything, it's a land-office business. This is what being a
minority means!

Again, this is not to say we shouldn't try. It is again in the spirit of
"know thine enemy".

As the state resolutions advocate, we can enlist the help of other
organizations. However, my cynical side asks things like: "what's in it for
AARP or ADA?" We can't even get ADA to lower prices at its diabetes expos
for us! ADA came to do good and does damned well!

But we'll keep plugging away. There is this -- and it's the philosophy I
live by: if we do nothing, we *know* what the result will be.

So once again into the breach!

Mike

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Sandi Ryan
Sent: Tuesday, November 19, 2013 8:29 PM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Oh, great, Colleen!  Glad to hear Ohio passed the resolution, too.

I don't believe I'm a Pollyanna.  I don't believe everything has to be
accomplished through the Congress (which is definitely good), or through a
resolution that's all-encompassing.  I'm not sure existing laws can't be
used to get what we want.  I also believe that, given multiple state
resolutions and a national resolution specific to diabetes technology and
equipment, we will have more clout to take to those in charge of deciding
what accessibility measures are included in meters, pumps, etc. Perhaps,
with the Apple model of accessibility successfully getting fully accessible
devices into the hands of not only blind people but people with various
disabilities, perhaps raising the cost of each unit slightly, but not by
much, we can work with the companies that make the devices for diabetes
care.  They've always claimed cost as their main deterrent to
accessibility--but they don't have to reinvent the wheel each time they do
something.  There are now voices readily available that can be used.  Also,
not all blind diabetics are blind because of diabetes, so the population of
people blind from diabetes is not the entire population for such devices. 

Also, the population is aging, which leads to more blindness overall, which
increases the market.

I do not delude myself that this will happen in a year.  But if, in 1940,
people had simply said "Well, this isn't going to happen for decades. 

There's nothing we can do," nothing would have been done.  Someone has to
step out and advocate for accessibility.  I can't think of better people to
do it than the DANs and the NFB!

Sandi

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
COLLEEN ROTH
Sent: Tuesday, November 19, 2013 6:17 PM
To: diabetes-talk at nfbnet.org
Subject: Re: [Diabetes-talk] Diabetes resolution

Hello Veronica,

I understand where you are coming from but Resoluness are not passed just
for the sake of passing them.

The next step is working to get changes implemented. In July, 2013 at the
NFB Convention a Resolution was passed which would include anything which a
sighted person can use being accessible by the blind including but not
limited to appliances, Communications Devices and Medical supplies.

The NFB of Ohio passed the Resolution on Diabetic Supplies at our State
Convention.

The Resolution passed November 3, 2013.

We used the texs of the Iowa Resolution with some editing where necessary.

You will see some action being taken to get our Resolutions implemented and
to make those who are less than helpful fully aware of the NFB's position on
various topics.

Colleen Roth

At Large Chapter President

NFB of Ohio

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Mike Freeman
Sent: Tuesday, November 19, 2013 6:01 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Diabetes resolution

What follows is my own personal opinion. Although I concur with what Sandi
writes below, I'm certain that she will disagree with me. That's OK.

In a sense, Veronica, you are correct: national resolutions have already
been passed that essentially advocate much, if not all, of what Jerry's
resolution, Sandi's resolution and the one I got passed at the Washington
affiliate's convention, advocate. Why, then, pass other resolutions or a
further national resolution?

First, there's nothing wrong with passing more than one resolution on a
subject, despite what some of the curmudgeon's on the Resolutions Committee
(of which, for once, I am not one) may say. Several resolutions on a
subject, especially if passed at conventions in different years, tend to
emphasize NFB's concerns on a given subject. Moreover, if resolutions are
passed at several state affiliate conventions advocating much the same
thing, it may well indicate to the national convention and to NFB leadership
a ground-swell of concern by the rank-and-file membership on an issue.

Second, as Dr. Maurer says, it may well give him ammunition with which to
approach mucketies in a given field, indicating that NFB means business.

I emphasize that as the President of DAN, I carry out the policies of NFB
and of DAN to the letter. I say this to blunt possible criticism of what I
shall write next as being, shall we say, unpatriotic. Now here goes -- and
this is where Sandi and I have some vigorous discussions.

What Dr. Maurer, NFB, DAN and I are really up against are two things: (1)
current law -- especially that dealing with discrimination against the blind

-- really doesn't cover medical devices except physical access (do mammogram
machines allow access via wheelchair, for example). Were NFB to secure
passage of the Home Appliance Accessibility Act (HAAA), it would explicitly
cover home medical devices such as insulin pumps, CGMS systems and meters.

But here's where the second problem rears its ugly head. (2) the present
Congress -- especially the House of Representatives -- is *extremely*
reluctant to pass *any* legislation that requires business entities such as
corporations to do anything. Corporationbs are effectively the next-best
thing to Heaven, according to a majority in the House. There is an

exception: congress is likely to crack down on compounding labs. But this
will happen precisely because there was a spate of deaths attributable to
that lab in New England. Short of this, especially since we, the blind, are
such a small minority and diabetics are a small, though growing minority
within the blind community as in the larger society, it makes it damnably
difficult when pharmaceutical and medical equipment manufacturers dig in
their heels and stonewall us. An apt comparison is with airlines and kiosks.

Remember the press release last week that decries the new DOT rules as being
phony for requiring ten years before kiosks must be accessible.

In my view, this means that Dr. Maurer and NFB have precious little legal
leverage (at least until after the 2014 elections and probably even then)
with which to bludgeon the diabetes industry into doing what's right.

Given the foregoing, what do these resolutions accomplish? First, they are a
cry of diabetic members of NFB saying, in effect: "there's *got* to be a way
to change things and get industry to do what's right!" Put another way, the
electorate is unwilling to accept my bleak assessment of the political
prospects for mandating accessible diabetes technology.

Further, the resolutions are intended to spur us on to explore other ways to
get at the accessibility problem as you and I discussed on the phone late in
the summer. If we're going to make progress, we are certainly going to have
to try something else, at least until the American people again embrace
activist government.

I confess that, given our minority status and given the lack of altruism I
see all-too-prevalent in society today, I am not sanguine that much will
happen quickly. In this Sandi has more faith in the good will of humanity
than do I. But the electorate is telling us that we can't ignore the issue
of diabetes gear accessibility (not that I was but we've gotten used to the
relative invincibility of the NFB and it's something of a new thing for us

-- or, at least it's perceived that way, when NFB doesn't get its way).

Lest list members think I'm giving up the fight, I am not. But it will take
out-of-the-box thinking and, like it or not, time to get what we want. We
must remember that what became SSI was Dr. tenBroek's dream as early as
1940. And when did SSI become law? 1973.

Let the brickbats fly.

Mike Freeman

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Sandi Ryan
Sent: Tuesday, November 19, 2013 5:00 PM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Hi Veronica,

As Dr. Maurer said it to us at the Iowa convention, passing the resolutions
in the states is a good start toward getting one passed at the national
convention.  Then he can step into the fray and meet with pharmaceutical
companies and the others mentioned in the resolutions, along with us, to try
to get them to do what the resolution says.  So states passing the
resolutions is the beginning.

Sandi

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Veronica Elsea
Sent: Tuesday, November 19, 2013 4:15 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Diabetes resolution

Please forgive my question but maybe it's just because I'm having a really
difficult time of it right now. I agree these resolutions are great in a
way. Now the rest of the affiliate knows what we need. But then what? If the
world jumped every time we passed some resolution at a convention, we'd have
all sorts of cool things by now. So what happens with the resolutions? How
does this turn into pressure on someone to do something? Just wondering lest
we start congratulating ourselves too soon.

Like I said, don't mean to be a downer, really I don't. Just wondering,
that's all. 

Thanks.

Veronica

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Cindy Ray
Sent: Tuesday, November 19, 2013 3:26 PM
To: Jerry Hathaway; Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Wow, that is truly awesome. Good work on that resolution and
congratulations.

Cindy Lou

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Sandi Ryan
Sent: Tuesday, November 19, 2013 3:12 PM
To: Jerry Hathaway; Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] Diabetes resolution

Jerry, this is just awesome!  Thanks for sharing, and for working to pass
the resolution!

Sandi

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Jerry Hathaway
Sent: Tuesday, November 19, 2013 2:56 PM
To: blind ddiabetics; Diabetes-talk
Subject: [Diabetes-talk] Diabetes resolution

The NFB of Oregon passed a resolution 

at our state convention on November 3, 2013 Regarding Advocacy to Make
Diabetes Tools and Technology Accessible to the Blind. The resolution is
listed below.

Resolution 2013-01  Regarding Diabetes 

Regarding Advocacy to Make Diabetes Tools and Technology Accessible to the
Blind

WHEREAS, The National Federation of the Blind has, since 1940, championed
the independence of the blind and worked to make the world accessible to and
safe for the blind; and

WHEREAS, to help increase the independence of blind people, the National
Federation of the Blind has fought to make technology, readily available to
the sighted, accessible for the blind; and

WHEREAS, according to the National Eye Institute (NEI) of the National
Institutes of Health (NIH), diabetic retinopathy is the most common cause of
blindness, affecting 4.1 million American adults over age 40, and

WHEREAS, very little technology currently on the market for constantly or
periodically monitoring blood glucose, accurately delivering insulin, or
performing other tasks to control diabetes is accessible to the blind, and
insulin pens carry a disclaimer that they should not be used by the blind
without supervision; and

WHEREAS, technology has been demonstrated to increase diabetes control in
the sighted, and the same technology, made accessible to the blind would
improve diabetes control among blind and visually impaired diabetics, and
increase independence in maintaining such control; and

WHEREAS, the need for improved accessibility of lifesaving diabetes
technology has been largely overlooked: Now, therefore,

BE IT RESOLVED by the National Federation of the Blind of Oregon in
convention assembled this 3rd day of November, 2013, in the city of Salem,
Oregon, that the National Federation of the Blind of Oregon and its Diabetes
Action Network division work closely with companies developing pens, pumps,
glucometers, and other lifesaving diabetes control tools and technology to
integrate accessibility for the blind and deaf-blind into the design and
manufacture of such items; and

BE IT FURTHER RESOLVED that the National Federation of the Blind of Oregon
enlist the support of the American Diabetes Association, the American
Association of Retired Persons, the American Association of Clinical
Endocrinologists, and the Center for Medicare and Medicaid Services to
establish and implement accessibility standards for diabetes technology; and

BE IT FURTHER RESOLVED that the National Federation of the Blind of Oregon
urge manufacturers of technology that provides information to the blind and
deaf-blind about diabetes management to recognize that creating technology
useful only to the sighted creates a circumstance that discriminates against
the blind and deaf-blind, and urge such manufacturers further to recognize
that the blind and deaf-blind of Oregon will join with other blind and
deaf-blind people throughout the nation to take such action as may be
necessary to end this discrimination; and

BE IT FURTHER RESOLVED that the Diabetes Action Network of the National
Federation of the blind of Oregon publicize widely the inaccessibility of
diabetes tools and technology as they are currently marketed, and the
unnecessary hardship their inaccessibility creates in the lives of blind and
deaf-blind diabetics.

Jerry Hathaway 