[Diabetes-talk] Diabetes resolution

Debbie Wunder debbiewunder at centurytel.net
Wed Nov 20 15:26:29 UTC 2013 

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: "Sandi Ryan" <sjryan2 at gmail.com>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Tuesday, November 19, 2013 10:30 PM
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: "Mike Freeman" <k7uij at panix.com>
> To: "'Diabetes Talk for the Blind'" <diabetes-talk at nfbnet.org>
> Sent: Tuesday, November 19, 2013 9:29 PM
> 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 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:
>>>> >
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>>>> nfbnet.org/cindyray%40gmail.
>>>> com
>>>>
>>>>
>>>>
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>>>>
>>>>
>>>>
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>>>
>>>
>>
>>
>> ----------------------------------------------------------------------------
>> ----
>>
>>
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>>
>>
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