[Diabetes-talk] Diabetes resolution

Sat Nov 23 22:52:02 UTC 2013

far, far more than that little darlins.

Bern
On 11/23/2013 6:49 AM, Wanda Sloan wrote:
> It will probably take a blind, diabetic Congressman to get this
> accomplished. (smile)
>
> -----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: Mike Freeman <k7uij at panix.com>
> To: "'Diabetes Talk for the Bl'" diabetes-talk at nfbnet.org
> Date: Tuesday, November 19, 2013 6:02 pm
> 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
>> ininextremely* reluctant to pass ininany* 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
>> iningot* 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 Bl'" <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
>>
>> Watch the video as The Guide Dog Glee Club sings "Rehab!" Yes! Yes! Yes!
>> http://youtu.be/JvakJ5lk6Us
>> Then find more music from Veronica Elsea and The Guide Dog Glee Club at:
>> http://www.laurelcreekmusic.com
>> Veronica Elsea, Owner
>> Laurel Creek Music Designs
>> Santa Cruz, California
>> Phone: 831-429-6407
>>
>>
>> -----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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>>
>>
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>> laurel
>> creekmusic.com
>>
>>
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