[Diabetes-talk] Diabetes resolution
Cindy Ray
cindyray at gmail.com
Wed Nov 20 03:52:34 UTC 2013
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
On Nov 19, 2013, at 9:47 PM, "Mike Freeman" <k7uij at panix.com> wrote:
> 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 7:38 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
>
> On Nov 19, 2013, at 9:29 PM, "Mike Freeman" <k7uij at panix.com> wrote:
>
>> 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 5:29 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: "COLLEEN ROTH" <n8tnv at att.net>
>> To: <diabetes-talk at nfbnet.org>
>> Sent: Tuesday, November 19, 2013 5:17 PM
>> 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: Veronica Elsea <veronica at laurelcreekmusic.com>
>>> To: "'Diabetes Talk for the Bl'" diabetes-talk at nfbnet.org
>>> Date: Tuesday, November 19, 2013 1:15 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
>>>>>
>>>>>
>>>>>
>>>>> Diabetes-talk mailing list
>>>>> Diabetes-talk at nfbnet.org
>>>>> http://nfbnet.org/mailman/listinfo/diabetes-talk nfbnet.org
>>>>> To unsubscribe, change your list options or get your account info for
>>>> Diabetes-talk:
>>>>>
>>>> http://nfbnet.org/mailman/options/diabetes-talk
>>>> nfbnet.org/cindyray%40gmail.
>>>> com
>>>>
>>>>
>>>>
>>>> Diabetes-talk mailing list
>>>> Diabetes-talk at nfbnet.org
>>>> http://nfbnet.org/mailman/listinfo/diabetes-talk nfbnet.org
>>>> To unsubscribe, change your list options or get your account info for
>>>> Diabetes-talk:
>>>> http://nfbnet.org/mailman/options/diabetes-talk
>>>> nfbnet.org/veronica%40laurel
>>>> creekmusic.com
>>>>
>>>>
>>>>
>>>> Diabetes-talk mailing list
>>>> Diabetes-talk at nfbnet.org
>>>> http://nfbnet.org/mailman/listinfo/diabetes-talk nfbnet.org
>>>> To unsubscribe, change your list options or get your account info for
>>>> Diabetes-talk:
>>>> http://nfbnet.org/mailman/options/diabetes-talk
>>>> nfbnet.org/n8tnv%40att.net
>>>
>>>
>>
>>
>>
> ----------------------------------------------------------------------------
>> ----
>>
>>
>>> _______________________________________________
>>> Diabetes-talk mailing list
>>> Diabetes-talk at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>>> Diabetes-talk:
>>>
>>
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/sjryan2%40gmail.c
>> om
>>>
>>
>>
>> _______________________________________________
>> Diabetes-talk mailing list
>> Diabetes-talk at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
>> Diabetes-talk:
>>
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/k7uij%40panix.com
>>
>>
>> _______________________________________________
>> Diabetes-talk mailing list
>> Diabetes-talk at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
> Diabetes-talk:
>>
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/cindyray%40gmail.
> com
>
>
> _______________________________________________
> Diabetes-talk mailing list
> Diabetes-talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/k7uij%40panix.com
>
>
> _______________________________________________
> Diabetes-talk mailing list
> Diabetes-talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for Diabetes-talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/cindyray%40gmail.com
More information about the Diabetes-Talk
mailing list