[Diabetes-Talk] My story

[Patricia Maddix]

That was a fabulous letter, Debi. I also sent one in last week.
Patricia.

Sent from my iPhone

> On Apr 8, 2023, at 11:48 AM, Debbie Wunder via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> I thought perhaps sharing my story might be an example. Thanks for anyone
> who also write and shares.
> 
> 
> 
> Warmly,
> 
> 
> 
> Debbie
> 
> 
> 
> How the Medical Device Nonvisual Accessibility Act Has Turned Me into an
> Impassioned Advocate
> 
> By Debbie Wunder
> 
> 
> 
> Talking about laws and the Congress is intimidating, but the Medical Device
> Nonvisual Accessibility Act forced me to move into the uncomfortable and
> what (for me) was once the unthinkable area of public policy.
> 
> I am an insulin-dependent diabetic. I know lots of us because I serve as the
> president of the Diabetes Action Network (DAN). I have been pushed out of my
> comfort zone in this position, to which I was elected by my peers. Others
> began trusting me to advocate on their behalf. Drugs with inaccessible
> labels, medications that are difficult (or impossible) to measure, and
> blood-sugar-monitoring equipment all conspire to make blind people dependent
> on others. Some of these things are changing. We can now measure our insulin
> and other medications, and many of those medications are now labeled
> accessibly. 
> 
> Far too often, getting the technology we need is still difficult and
> sometimes impossible. Monitoring blood sugar used to take a needle stick,
> putting blood on a strip, and then inserting that strip into a machine. A
> blind person would hope all the while that they got enough blood to be
> measured, because doing so was difficult. If not, they would have to resign
> themselves to the pain of going back to step one. Now, there are at least
> two continuous glucose-monitoring devices that require a stick only once
> every ten or fourteen days. The catch is that the readers sold for these
> sensors aren't usable without vision. Thankfully, those of us with
> smartphones can read the sensors to measure our blood sugar and be alerted
> when our levels are dangerously low or unhealthily high. We determine how
> much insulin to take (usually through shots) based on these readings.
> 
> The better way to regulate blood sugar is through the use of insulin
> pumps-devices that quickly give insulin before blood sugar varies enough to
> require much medication. A person must wait until blood sugar goes above 180
> before injecting a shot to drop it to 120 or less. The insulin pump begins
> the flow of insulin when the sugar starts rising and stops when it starts
> returning to the desired level. This does a far better job of keeping blood
> sugar within an acceptable range, resulting in less damage and a longer
> life.
> 
> This is great technology, but not so much for blind people. No unit on the
> market talks. Not one reliably beeps to indicate the increment of the level
> being adjusted. Few are easy to load with insulin or to monitor when
> additional insulin is required. Of the few blind people I know who use
> insulin pumps, even fewer can do so independently. For many of us, the
> challenges and dangers are just too great.
> 
> The problem is more than caring for ourselves. I was my mother's caretaker
> for a time. She needed me to administer oxygen and many medications. Neither
> of the machines she used gave a single clue as to the way a blind person
> should regulate their output. Often she was unable to make these adjustments
> for herself, so I gambled. Having to guess and to hope that I was right was
> nerve-wracking. A single wrong guess would have put her in danger.
> 
> The Medical Device Nonvisual Accessibility Act can change all of this. When
> the law mandates that devices must talk, beep, and have accessible controls,
> every blind person will have more independence. But this law will change
> more than just technology. It will help change the perception that blind
> patients cannot take care of themselves and must consequently be taken care
> of. It will change the idea that blindness equals dependence, and that
> dependence means reliance on others for important medical care. The passage
> of this act will attack both the visible problem of inaccessibility and the
> attitudinal problem that causes inaccessibility to not only exist, but to
> persist. We must take charge of our technology, rather than be subjected to
> continual dependence because of it. We must do it for ourselves and for
> those we love who need us. Therefore, I will take on the law, participate in
> its introduction, push for its progression through the Congress, and press
> as it moves from a statute to an implemented law complete with regulations
> and adherence. Then I will stop talking about the need. I will start talking
> about the way we use the law. We will put technology to work for us, rather
> than making us victims in the beautiful age of digital machines that should
> bring access to all of us the world over.
> 
> 
> 
> Debbie Wunder
> 
> 
> 
> 
> 
> 
> 
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