[Diabetes-Talk] What Now?

Tue Aug 25 19:54:37 UTC 2020

Some state affiliates do have a local DAN division, but not all. We tried in Nebraska but it never happened.

Bridgit

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Melanie Torrance via Diabetes-Talk
Sent: Tuesday, August 25, 2020 1:35 PM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: Melanie Torrance <melanietorrance at icloud.com>
Subject: Re: [Diabetes-Talk] What Now?

Can someone post/ link us to a copy of the Bill of Rights that you are referring to?
Also, are there State specific divisions of this network?
Melanie

Sent from Melanie's i phone

> On Aug 25, 2020, at 2:19 PM, gary-melconian via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> Brigit, so do I at google.  So let me know.  
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, August 25, 2020 9:58 AM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
> Subject: Re: [Diabetes-Talk] What Now?
> 
> I do freelance marketing for a living and have a communications background. I can help in this capacity. And I am not without connections. So, if we move forward in any way, I have ways of helping.
> 
> Bridgit
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Sandi Ryan via Diabetes-Talk
> Sent: Tuesday, August 25, 2020 11:46 AM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: sjryan2 at gmail.com
> Subject: Re: [Diabetes-Talk] What Now?
> 
> You are spot-on, Bridgit! And perhaps what we need the most help with from marketing is marketing so that the manufacturers and designers will get the message that this can make them lots more money AND be simple! I do think there's room, too, for marketing our issues to the potential partners I wrote about yesterday. They know how to work with the manufactueres who are our "target audience," and have been doing it for years. We aren't there yet. That's what I'm thinking about the doctors, nurses, dietitians, and pharmacists who treat us, the nonprofit groups and educators who train us and the public about diabetes, etc. And, perhaps using the Bill of Rights from the second of the two resolutions on this topic, we can make their training simple and relatively painless. I have spoken with several health professionals working in diabetes, and they express incredulity that the technology is not available to people with diabetes who are blind. Because these technologies come along every day in their worlds, they think it's just happening for everyone--unless they currently have a blind patient struggling with lack of accessibility.
> 
> Sandi
> 
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Monday, August 24, 2020 3:46 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
> Subject: Re: [Diabetes-Talk] What Now?
> 
> Sandy and all,
> 
> Yes, exactly.
> 
> I'm frequently contracted to write blogs on digital accessibility. All the research shows that creating devices and platforms with accessibility as a standard feature is not super expensive to do, especially in this day and age, but it also broadens market reach. When Universal Design is implemented, it works for a majority.
> 
> There's zero reason we need a separate insulin pump for the blind. Medtronic, Tandem, they just need to create a voiceover-like program that can be turned on for patients that need it. Just like Apple and Android products. People in the tech world who deal with Universal Design say this is very possible, not difficult and not expensive. These are just ablist arguments companies like to make so they don't have to do anything.
> 
> But it would actually be simpler and cheaper for existing companies to redesign current pumps with an accessibility feature then creating an entirely new device.
> 
> It's just a matter of hitting the correct key in this argument. Businesses like to hear they can make money. When you broaden your market reach by creating products with Universal Design in mind, you open up your market to a potential 61 million more consumers. Money speaks. We need to target our arguments with money speak and not the disability right angle, as wrong as it may be. Unfortunately, no one gives a shit about human decency and human rights; businesses want to make money, end of story.
> 
> Also, it's been over a decade since this home appliance bill has been a thing, and none of it has come to fruition let alone the portion about medical devices. It hasn't even been introduced to the floor. In the meantime, pumps and other med devices become less and less accessible for people with various disabilities, not just blindness.
> 
> Bridgit
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Sandi Ryan via Diabetes-Talk
> Sent: Monday, August 24, 2020 3:06 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: sjryan2 at gmail.com
> Subject: Re: [Diabetes-Talk] What Now?
> 
> It seems to me, though, that there are quite easy ways to get speech, beeps and anything else we need into today’s technology, and to do it without lots of extra cost of production for just blind people. Apple has been producing their phones, tablets, etc. with accessibility built into every piece they sell since at least 2010. They figured out what axccessibility would take—and not just for blind people, but for deaf people, those with hands that don’t function normally, etc., and they put those accessibility features into every unit. People who don’t need the features just ignore them, people who need them pick and choose what they use, and everybody pays the same price and you just pick the unit you want off the shelf and use it, however it works for you. They added the cost of production across all their units, so that “how many will we need, and how will we get rid of them if they’re not liked by this population” are not valid questions. There may be glitches I’m not factoring in, but I’m thinking there are brilliant engineers working with all this who could take those glitches and make them no problem, and an insulin pump would be an insulin pump, not this one for the blind and this one for the sighted. 
> 
> 
> 
> Having addressed this with Anil Lewis and others at NFB, what they’ve come up with is the idea for a bill that would cover large home appliances, gym equipment and ... what was that other thing? ... Oh yeah! Medical devices! 
> 
> 
> 
> It seems to me we need to a) work with marketing experts to create a message or group of messages that clearly and succinctly express our needs for accessible devices; b) find out how to reach and talk with someone—anyone—who works on manufacturing equipment for diabetics and could think outside the box long enough to talk with us to discuss their needs and fears; c) Form a task force and work with technology engineers to come up with ideas for how accessible medical devices can be made using hardware, and possibly software already available on the market; d) work with financial experts to figure out how devices can be priced for everyone, instead of redesigning them for each population based on accessibility needs or lack thereof; and e) help our partners (endocrinologists, diabetes educators, nurses, dietitians, pharmacists, researchers, nonprofit organizations, and others) understand our problems with caring for ourselves without the devices available to those who don’t need accessibility and why it’s important that they care about our issues.
> 
> 
> 
> Technology is much smaller and less expensive than when the Prodigy meter was created a long time ago. We used to hear the old line about there are so few blind people, how would things made for us ever make a profit? But I don’t think that’s valid any more. The Apple protocol demonstrates that. If a blind person, or a person with another disability, never bought an iPhone, Apple would still sell them. And I can’t imagine, if an insulin pump was made accessible, why anyone with diabetes not jumping at the chance to have one. It makes such a difference in the numbers of injections and the time you’d spend taking care of yourself! I don’t need one now, but when and if the day comes that I do, I certainly want it to be available!
> 
> 
> 
> So ... where do we start?
> 
> 
> 
> Sandi
> 
> 
> 
> 
> 
> 
> 
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Matt Davis via Diabetes-Talk
> Sent: Monday, August 24, 2020 11:56 AM
> To: Diabetes-Talk at nfbnet.org; alewis at nfb.org
> Cc: Matt Davis <mdavisforalternatives at gmail.com>
> Subject: [Diabetes-Talk] What Now?
> 
> 
> 
> Let me know your thoughts…I, Mary, currently wear a 530  G, Medtronic pump and too, am blind. In my past job position I had been invited to many Diabetic Fairs and demonstrated blindness related tools, alternatives and techniques. 
> 
> Because I wore an Acu Chek Spirit pump, I would demonstrate how it worked for me. Demonstrating how the tones and beeps allowed a blind person to navigate most of its functions.
> 
> interested participants  and many “representatives” of many companies would also learn about how pumps work, making it possible for blind people to use their equipment. 
> 
> Reps of diabetic equipment and companies would ask, “How many blind people would actually use a pump?”
> 
> I would repeatedly explain that the number would be skewed because the available pumps do not have the tones or beeps for navigating.
> 
> I would further explain to these reps, that if pumps were made with these simple tones or beeps, more blind people could decide if they were interested or not.
> 
> Since I am new to this list serve, is it possible to take a count at this time to know how many of us use a 530 Medtronic pump, second, how many would use a pump if tones and beeps were made available,
> 
> And Third, years ago, when Disatronic first manufactured a workable pump model then joined with Acu Chek who kept that upgraded models which were designed for a person to use the pump in their pocket, thus allowing blind users access. 
> 
> So, when Medtronic bought (or what ever terms Medtronic wants to use) Acu Chek’s pumps, Medtronic not only did away with a usable pump for the blind, they continue to upgrade, to a point that it is now, absolutely impossible for a blind consumer to use. 
> 
> What if their goal in continuing to upgrade as they Are, is specifically targeted against blind persons who receive Medicare and/or Medicaid.
> 
> And if so, now what?
> 
> It is a serious question for some! 
> 
> No one wants to sue, but what to do?
> 
> Thank you and sincerely, 
> 
> Mary
> 
> 
> 
> Sent from Mail <https://go.microsoft.com/fwlink/?LinkId=550986>  for Windows 10
> 
> 
> 
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