Living with Diabetes As A Blind Person
By Danielle McCann
“It was just a matter of time before you got it.” That’s what my doctor told me in the summer of 2010 when I was diagnosed with type 2 diabetes. My grandmothers on both sides had it, as well as several aunts and uncles. A few years after I got it, my dad ended up being diagnosed too. At the time, I was a young adult. I had a lot going on, and I honestly thought that it wasn’t as serious as the doctor made it out to be. So I’d cut out some carbs, do a little bit of exercise, and I’d be fine. I could say that I stuck to this casual plan and that everything fixed itself, but that would be totally untrue.
In order to manage diabetes, you have to test glucose levels in the blood also known as “checking your sugar.” In order to test, you have to prick your finger so that it bleeds and transfer the blood on to a strip that is fed into the glucometer that displays the result on a screen. Additionally, if you are insulin dependent, there are numerous tools needed such as an insulin pump that electronically deliver medication based on the glucometer’s reading.
Back in 2010, my options for finding an accessible glucometer were slim. If memory serves, there were only two options that talked. I reluctantly bought a test kit and checked my sugar regularly for about a week. Then, I started finding excuses to skip the finger stick. I reasoned that if I did it too often, I wouldn’t be able to read Braille anymore. I also witnessed my diabetic relatives’ relaxed attitude toward “la diabetes.” At family gatherings, there would be at least five of us with the chronic disease eating and drinking what we wanted regardless of the consequences and not a glucometer to be found.
I’m not blaming my family at all for my independent choices. I’m simply saying that it was much easier to grab seconds than it was to grab my glucometer. Besides, the main complication of uncontrolled diabetes is blindness. And I was born blind, so there was no point in taking care of myself. Not to mention, if I didn’t have a full plate, my family would be insulted.
Almost twelve years later, my thinking has evolved and, to a point, so has technology. I take much better care of myself now and, thanks to the iPhone, I don’t have to manually test my blood sugar anymore. I want to pause to note that the iPhone, not an actual medical device makes it easier to test my sugars.
Today, there are devices called continuous glucose monitors or CGMs that we can wear that send a Bluetooth signal to a smartphone. But what if I didn’t have a smartphone? The CGM can also feed information to a standalone device that you can carry around with you, but it’s not accessible. So if you’re on a fixed income or not tech savvy, you’re out of luck. That is why the National Federation of the Blind’s Accessible Insulin Pump Taskforce is working with several insulin pump manufactures to provide independent access through both native accessibility to the devices and through the use of a smartphone.
This lack of accessible medical devices isn’t limited to those that are used to manage diabetes. At-home care devices that deliver chemotherapy or dialysis continue to be produced with updated technology such as digital interfaces but without accessibility, and manufacturers are not currently being held accountable.
I find an incredible amount of irony in the deployment of inaccessible devices to manage diabetes. For example, if we know that blindness is the number one complication of diabetes, why are medical device manufacturers not building their products with accessibility in mind? Almost twelve years later, the variety of accessible glucometers is just as small as it was in 2010. If not for the advancement in accessibility of smartphones, many of us would have no choices about which devices work best with / for our lifestyles.
Legislation is in the works to force manufacturers to do what they should have done from the start which is to make their devices inclusive. The Medical Device Nonvisual Accessibility Act (H.R. 4853) is gaining cosponsors in the House. The quicker this bill is made in to law, the quicker we gain footing in the medical arena. I believe that twelve years from now, diagnoses of diseases such as diabetes will not mean we are dependent on devices that are not accessible.