[Diabetes-talk] Diabetes resolution
Cindy Ray
cindyray at gmail.com
Wed Nov 20 03:37:49 UTC 2013
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
>>>>
>>>>
>>>>
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>>> com
>>>
>>>
>>>
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>>
>>
>
>
> ----------------------------------------------------------------------------
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