[Diabetes-talk] Diabetes resolution

Tue Nov 19 23:01:10 UTC 2013

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 2:00 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: "Veronica Elsea" <veronica at laurelcreekmusic.com>
To: "'Diabetes Talk for the Blind'" <diabetes-talk at nfbnet.org>
Sent: Tuesday, November 19, 2013 3:15 PM
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

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-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Cindy Ray
Sent: Tuesday, November 19, 2013 12:26 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

On Nov 19, 2013, at 1:55 PM, Jerry Hathaway <jerry.hathaway2 at frontier.com>
wrote:

> 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
>
>
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